David's Stem Cell Transplant

Always looking for solutions.

2008-01-11T08:46:00.000-05:00

Since the first day that we found out that I might have Scleroderma, Robbi and I have looked at every treatment that we have heard about. When you look for ideas - boy can you find them. Then, once you go public with your diagnosis, you are inundated with information from all over the world.

We heard about treatments with herbal medications, acupuncture, meditation, new super drugs, experimental therapies, and traditional ones. This research that we did was how we uncovered stem cell transplants. It i also how we verified all of the traditional methods that we have used. We have never accepted anything, at face value - even when it was proposed by our medical team and their referrals.

I tried a couple of treatments that fell off the active list quickly - acupuncture and herbal meds, are a couple of them. Some of the ones that I continue to use include therapeutic massage, physical therapy, and traditional medications.

About 1 1/2 years ago, when my lung function deteriorated at a faster rate, I had conversations with my doctors. I was, then, going to BU Medical Center. I was scared, and asked my Rheumy to help me prepare myself for the near future. I wanted to gather information about my options for treatment. He outlined that my options were, as he saw them:
1) maintain the process that we were using till then - wait and see what happens next
2) begin a new round of chemo, using Cellcept
3) if I don't respond positively to chemo, and continue to deteriorate, then we would talk about a lung transplant.
I asked about stem cell transplants, (which I had read about and knew there was a medical trial going on). He said that I was not qualified for the medical trial - because I had already taken chemo treatments.

So, faced with my current condition, I asked to get onto the Cellcept, ASAP. He agreed.
The next meeting I had with my Pulmonologist, I raised the question of lung transplants. Robbi was with me that day, (about 2 months after the previous meeting). What we heard was not encouraging... Extreme surgical conditions, very long recovery, very high risk of rejection, poor quality of life, limited change of extending life... Case closed.

Fast forward to November 2007:
When I returned home from the hospital and we weren't sure if I was truly dying (now), we talked to my PCP about lung transplants again. I was in contact with a person who had a double transplant in June and was doing extremely well! According to his son, he was recovering so well that he was working every day as the owner manager of a construction company. Remarkable - to say the least. My PCP suggested that we talk to my new Pulmonologist, and we did. She said that we should get all the info we could to make a reasonable decision. She set up a meeting for us at the Brigham and Woman's Lung Transplantation Center.

It needs to be said that neither Gordon, (PCP), nor Kimberly (Pulmon.) proposed that a transplant is the right way to proceed. As a matter of fact, both of them remained totally neutral in all conversations. Robbi was never convinced that this research would yield a positive outcome. She went trough with this meeting to allow me to gather all the info I needed to make a sound decision. So we packed up the oxygen tanks (4 of them, in case of delays), and headed into Boston early today. [I expect that many of you may remember that Robbi is NOT a morning sunshine flower... Yeah - still not! Oh, the things she does for me.]

We got to the appointment 1/2 hr. late, and then had to wait 1 1/2 hr more before our doctor came in... (I was ready to walk, but Robbi, again, kept me in the NOW.) Dr. McKee began and it didn't take long for the reality to land hard.

Firstly - It is most unlikely that I would ever qualify for a transplant. The first qualifying tests would need to be a complete gastrointestinal workup. Based on my GI history, which includes GERD (look it up), and daily vomit sessions, I would present as a patient that offers the lowest degree of success. Even if I were to pass that first qualifier, there are several other huddles that the transplant team would have to face:

a) Whereas transplants typically result in several acute rejections, and that Scleroderma patients don't heal well, the chances of a complete recovery is severely jeopardized.

b) Diffuse Scleroderma patients (as I am) have thickened skin inside their bodies, as well as outside. This could mean that when the transplant doctors attempt to attach the new lungs, that they may be sewing them onto skin that is tougher to manipulate than it should be. Again, such hardened skin will not join well with the new skin.

c) Scleroderma is such a varied disease that the doctors can not possible know what to expect before they open me up - and then it's too late to stop the process. Yeah, they can stop the operation. The issue becomes - what did they find that makes them want to stop? And what was already cut that still needs to heal?

OH YEAH - Case Closed!

The important benefit for having gone through this exercise is that we now have the facts. We know that my disease is going to progress... and we know what the progression is likely to involve... we know what lung transplantation involves... and we know when the window of opportunity (for a transplant) closes. With this info, we are empowered to make choices that will be best for each of us, in our family.

It doesn't get better than that...

Just a 1 Year reminder

2007-12-27T09:38:00.000-05:00

One year ago, yesterday, Robbi and I left Westborough for Waterville, Maine. Today was the day that I had the "utter" installed... and tomorrow was the day that I received the initial chemo infusion; which was to Mobilize my stem cells.

I am amazed at all that happened back then - and since. I am thankful for it all. I wouldn't change a single moment of my life - including all this. To want to change any of it would be to give up the chance for all the wonderful things that I have gained in my life.
OK -ENOUGH MUSHY STUFF! (True, but mushy)

Moving on... Stay tuned...

To Be, or Want To Be, or Don't Get It Be

2007-12-27T09:09:00.000-05:00

First of all, I’m getting feedback from readers that interpret my mood as “discouraged”, and otherwise less than positive. I can only say that I feel fine, psychologically. These postings are intended to be as honest as I can be. Some days I am frustrated, angry, or down right pissed off. I further intend to use humor to illustrate the way I look at all types of life’s circumstances. At NO TIME do I feel victimized by life. My strength comes from within, and is reinforced by Robbi's love and encouragement. Jayme and Emily are constant sources of inspiration.

Hey, I've got it better than many others – no one is bombing my neighborhood, and my family, (thanks to so many of you), has never lacked a single thing to sustain our lives. So please read the following posting in this light. This one addresses a challenge I’ve been working thru, that deals with relationships.

This posting was originally directed to others who have chronic and terminal disease. However, after I spoke with several family members and a few friends, I realized that this topic is relevant to anyone who has first hand experience. So I pose this question to everyone… “I wonder if you experience this process the same as I do?” Please comment – early and often.

As our condition worsens, it happens in stages, or so it seems. So, when we feel like we have leveled off, we learn to cope with the new limitations. I figure out how far I can reach without pain and how far I can walk without coughing, and then I remember to ask for help or use some tool/aide that allows me to avoid the discomfort. Within a few days (not as fast as monkeys learn) I get the habits in place and I feel like I'm doing OK. It's around this time that friends and family tell me that I look so much better. Oh, Yeah - I look better because I'm spending more time in bed or sitting in a chair at the laptop. I've learned to limit my activity to a) going to the bathroom, b) making a sandwich and getting my drink, and putting a new DVD in the player. Oh yeah, I'm doing much, much better.
It's true that I am doing better - better than I was when I had the infection in my lungs... better than when I had to use the bedside urinal... better than when I was when I had to have some one wash me while I rolled over on my side, in the hospital. I am feeling so much better on many levels, and that is NOT a sarcastic message.
Neither am I angry at, nor resentful of, those that keep pointing out how good I look. Wait, maybe I am… a little...

There are those who come to visit and are quick to say, "You look so much better than I expected (based on the updates from Robbi and others that had seen me at my worse)," and "You sound so much better! You aren't coughing nearly as much as you were last week. It's true. I do look better and I am coughing less. I am encouraged that I can get out of bed and do some things around here - so that I don't need to ask Robbi to do them for me. It's even better when I can do something FOR Robbi. Those are too rare instances; but it is nice to see a smile flash on her face for even a moment, when the tiniest bit of weight/responsibility is ever so fleetingly removed. (Too melodramatic, perhaps...) The issue I am trying to express is that I am frustrated by the 'cheering' and encouragements that friends and family express as soon as they hear any type of positive information.

That is a pretty broad statement, so allow me to clarify. Example: A person calls and asks how I'm doing. If I answer "fine", "better", or "OK"; the typical response is, "That's GREAT! I can hear it in your voice - you sound better. What do the doctors say?" My reply is usually, "I still have Scleroderma." Now, when the caller is someone "In-the-Know", such a comment is taken without malice. It signifies that I am reminding them, and myself, that all rules are still in effect - my condition is chronic and terminal, and that the latest episode signifies a drop in overall performance but now I am stabilized, until the next episode. The mutual respect and understanding that exists between us "In-the-Know" people = the assurance that my snappy answer is not taken as a sarcastic +/or hurtful reply.

My difficulty, (which is the root of my frustration and growing annoyance), is dealing with those who are not "In-the-Know". This group is a mixture of (1) “Newbies”, (2) “Want-to-Bes”, and MOSTLY (3) “Don't-Get-It-Bes”.
Group (1) requires patience and lots of background. These people are an investment of time that is often worth the experience. Although it can be initially draining to educate them, and some days I just can't do that, if I pay attention to their ability to grasp the situation I may gain a person "In-the-Know"... or even a new friend.
Group (2) are those who are usually already within our closer circle of family & friends who haven't fully grasped the big picture. As friends, they have already been accepted into the closest circle of trust. They are caring people who have earned our respect for the way they live their own lives. The reason they are considered "Want-To-Bes" is that they (rightly) sense that they are not "In-the-Know", but desperately want to be. (Was that too obvious?) The break-point is that we are at a stalemate. The ways that this impasse is reached are infinite - as are the number of ways that it may be breached... but it never seems to happen. So, these people tend to become a major drain on my energy and patience. Thankfully, it is rare that such a dysfunctional situation causes a loss of friendship. Most often the relationship evolves into a more distant one where the original attractions to friendship can be called upon and enjoyed - within the fewer encounters that take place. When a “Want-To-Be” is a family member the cycle is endless. The closer and more personal the original relationship, we tend to invest a vastly disproportionate amount of time to help them graduate to "In-the-Know". I suppose it is my own dysfunction that allows such situations to exist... However; I don't need to justify the existence of a condition, (no matter how dysfunctional), to explain how I feel about it. Perhaps I will delve into that idea within a later session.
Group (3)-a is the saddest group. I am fortunate that none of my close family fall into this category. I can only imagine the pain that may be inflicted upon all who are involved, when this circumstance is manifest. Robbi and I openly confront one another when ever we observe that the other of us is unable to work through a troubling family situation. With this honesty, we have faced and resolved most dysfunctional-family relations. I am quite sure our families will disagree with this assessment… but their agreement is not required, to define a resolution. What can not be contested is that all of our close family is now “In-the-Know” and we are fortunate to enjoy their love and support.
Group (3)-b are the friends that began In-the-Know and then for reasons that only they can explain, we watched them drop like a rock from there to Group (3). Sometimes there is an incident that precipitates the transition. Sometimes it’s an evolution so gradual that it becomes noticeable only after the line has been crossed. When you wonder why you have to down-play the good news so that someone doesn’t start making inquiries about your return to pre-disease activity – you may have crossed the line. When you wonder why you have to down-play the bad news so that that same someone doesn’t put on the Cheerleader sweater, shake the pompoms, and yell “David, David, he’s our man, if he can’t do it, NO ONE CAN!” – You may have crossed the line. The enjoyment you’ve shared with them has accumulated over time and strengthens with each moment – the good, the bad, and the sad. As a friendship matures, trust builds. So, when the realization that a friend is not adapting to the new circumstance, (which is your disease), it is natural that you may turn your attention to them. As friends they deserve your attention. They deserve all the attention you can muster. So what to do when they don’t understand? There is no formula for saving friendships. We may do whatever we did to build and maintain the friendship from its beginning. It is very sad when we reach the realization that they are “Don't-Get-It-Bes”. When the transition to “Don't-Get-It-Bes” is the result of a single incident – for instance: they have rejected or disrespected you – the decision to dissolve this friendship might seem obvious; however, from experience, I can tell you it is not. (This story is not yet ready to be told.) There is history - laughter, sharing of very personal issues, and other times when they helped you with a serious issue. It just seems like it won't get better, and you hope it won't get worse. This is an extreme circumstance.

As mentioned above, I've been hearing that people, who are relatives and friends, are having similar experiences. Their friends ask, "Has David gone into remission yet?" "Has the stem cell transplant cure his disease?"

Of course there is genuine interest in my progress. People naturally want to feel that they have had a positive impact. My sister tells me that occasionally one of these people will begin to understand. When that happens, she feels as though the word has reached out a little further. It is all about educating people. Little by little, the message is spreading and that maybe someone will hear about Scleroderma and that person will have an affect on the solving of it's cause... and cure. I've got to admit, with that intention in mind, it eases the frustration - and I'm more inclined to spend more time trying to get thru to the "Want-To-Bes". Thanks Ilene!!!

These last few days I've been reestablishing contact with many of my co-Sclero partners. I am gathering more info on their conditions and how they have been coping with their lives since last we spoke. I hope to be able to share some of this soon.

Thank you all for your contributions to this mental health session...

My Travel Buddy Is By My Side

2007-12-16T18:38:00.000-05:00

Way back, at the end of the last century, I worked for a software development company as their Client Liaison. It was the best position that I had ever had - until Desktop David. That position required that I travel around the US to meet with clients. My role to to their advocate within my own company. It was a unique vision, one that I credit to my friend Bob - who also hired me to be the first ever to employed in that role. What a genius! No, really, he is a smart guy. But that is not the point of this posting...

Being a start up company, and that I was the only person doing this job, and that we had about 50 active clients, I had to get on a plane 2-3 times a month. Some of those trips were a week long, but usually 2-3 days. At that time, my daughter Emily was almost 14 years old. She was a Beanie Baby collector. (Somewhere in our basement is a vacuum sealed bag with 100 - 200 Beanies stored away.)

Once when I was packing to go on a client visit, Emily came to me and gave a Mini Beanie Ant Eater. She told me it was to be my Travel Buddy, so I wouldn't be lonely and I'd have someone who represented our family, with me to share the experience. From then on, I've always packed my Travel Buddy, for every trip I take. When I packed for Maine, last year, my Buddy came along. Once I reached a location, my Buddy always came out of the bag and sat on the desk next to my laptop. In Maine, he sat on the table that was next to my bed and he came to the hospital for the transplant too.

Two nights ago I realized that I was on another journey and was feeling kind of lonely. I had forgotten my Buddy. Actually, he was sitting on the desk, across the room. However, this journey was undertaken every nite, when I am asleep. I've been having trouble sleeping for a couple of weeks. My new pattern is to awaken every hour.

Until 2 nites ago I had been trying several combinations of drugs to induce a return to my regular sleep pattern. Ambien, Ambien CR, Percocet, Adavan, and Cyclobenzaprine have been ingested in a variety of does and combinations. Doing drugs is not as adventurous as I remember it to be. First of all - none of them achieved any results. Secondly, the hangover from some of them was worse than sleep deprivation! My PCP, Gordon, called and we discussed this matter. It turns out that my problem may be psychological... HOW CAN THAT BE! How is it that our mind can be more influential than drugs? Who knew???
Gordon suggested that I not use medications, but rather that behavior modification might help. Before you start to protest that he sounds like one of those new age gurus, or a holistic healer, I assure you that he is very traditional. He also happens to be a very trusted friend, as well as a skilled physician, so I have decided to heed his advise.

More recently, I've begun to have nightmares. These aren't 'wake up screaming' nightmares, but I awaken agitated and panting. After I stopped taking meds, a couple of nites ago, I awoke and remembered nearly the whole dream... so I turned on the lite and grabbed the note pad that I keep by the laptop and wrote down the whole thing. Then I realized that I had had a 2-part dream. I wrote the first part too. When I went back to sleep, I slept for 3 straight hours - the longest stretch WITHOUT DRUGS, in weeks! MMMMMMM, could we be onto something?

If you are hoping that I'll reveal my inner psychotic makeup... not yet....

I did share the dream with Robbi. It was a fantastic exercise in sharing. As I walked though the details, most of the symbolism was pretty obvious. My dreams have always been as simplistic as the rest of me. This whole process is stimulating more discussion between Robbi and I - and it is good.

Last nite, before I went to bed, I moved my Travel Buddy from the desk to my night stand. I feel a need to have him close. I feel an Emily-hug, every time I look at him. He is not here to fend off nightmares. It is actually the opposite. What ever it is that triggers them is what I need to confront. It's good.

I had another nightmare, last night... this one was different from the earlier one, but it is a repeat from when (I think) I was in the hospital. Here we go again. This time it's with a trusted friend by my side.

Stay tuned...

The Greater Side of Jayme

2007-12-06T16:51:00.000-05:00

As parents, we are quick to tell the humorous stories about the times when our children baffle us - no, they drive us CRAZY. Each story is a testimony to how patient we are in the face of absurdity. We love these stories on a variety of levels. We get to show how well we can tell a great, TRUE story... we are instantly elevated within the Fraternity of Parents to a higher level on the OH MY GOD, HOW DID WE LIVE THROUGH THIS Chapter (also known as the "Can Anyone Beat This One" Scale)... and, perhaps the best satisfaction comes from sharing that connection with our parents when we acknowledge that THE CURSE LIVES ON! Yes, the eternal curse that is uttered unto us when we do that utterly foolish deed, and our parents mutter, "May your child drive you as crazy as you do to us!!!"
Speaking as a child of 2 deceased parents I can assure you that that connection is every bit as real and satisfying STILL. Whenever our kids drive me to the point of spitting out the curse, my next action is always to smile and know that they are laughing - even if only in my heart.

So, when Jayme headed for Augusta, Georgia instead of Augusta, Maine, we had a classic moment that assured us the opportunity to jump way ahead of the class. We regularly about that that event. The contrast of Jayme's intelligence and his actions - this one time - created the 'perfect storm' of the ridiculous & the humorous.

As is so often the case, I have allowed that event to become a defining moment for Jayme. This is an injustice that I will correct now.

While I was in the hospital, several weeks ago, Robbi and I were faced with a series of circumstances that required us to make medical decisions about my treatment, which we were unprepared to make. We lacked knowledge and that affected our confidence. Not since the time when we heard the initial diagnosis of Scleroderma had we been so overwhelmed. As we tried to regroup, and educate ourselves, our doctors continued to confer and speculate... questioning and guessing, Robbi and I maintained the reins of control.

Then one day a group of doctors came into my room and speculated that they would like to perform a bone marrow biopsy on me. My red blood cell count had dropped very low (anemia)and a variety of possible causes existed. They wanted to get enough information to make a "reasonable" guess and then plan my treatment.
1) The infection in my lungs, (the reason I was hospitalized), was an unlikely cause, but could not yet be ruled out.
2) It is a moderate possibility that my bone marrow could have been damaged by the stem cell transplant. This damage may or may not be a treatable condition.
3) Most likely, a condition called "Anemia of Chronic Disease". This is a common peripheral condition that affects many with chronic conditions. Although not fully understood by the doctors, (hence - the ambiguous name), it is believed to be an affect of constant battles within the body as it tries to fight perceived infections.

While the doctors debated several points (including - did I have pneumonia... or not) my anxiety began to mount, at the prospect of have the biopsy. A combination of being very ill, weak, very short of breath, fatigued from poor sleep, and - NOT THE LEAST OF ALL - scared of the pain associated with a bone marrow biopsy. Remember me? I'm a big baby!

Throughout everything, Robbi, (remember her?), continued to keep the Rubenstein Clan running. Aside from the normal logistics, (home, work, kids, etc...), she was learning to understand and respond to new medical issues. More so, she had to do all this while coming to terms with the seriousness of my illness. All that and still be with me as my friend and partner. Robbi's strength is based in her intuitiveness. In this time she knew I was afraid. Knowing, too, that my fear was compounded by illness, she worked with me constantly to stay in touch with the facts and the things that were important to us - the 4 of US! How demanding is this? Some of us will only know because we love Robbi (or have a Robbi-like person in your life).

Now - fast forward...
After days of debating with the doctors about the need / value / and alternatives to doing the biopsy, it was determined that it had to be done. Even with the evidence presented and my agreement secured, (and the risk waivers signed), my anxiety grew. I had the assurances of the doctors that I could take mild sedatives. I will be lying on my side throughout the procedure. During this stage of my illness, lying on my side usually caused me to cough intensely. Anytime I was near to lying flat, I would go into coughing fits. This caused even the doctor to be concerned, for if I had one of these fits, the procedure would not be able to continue. Something that no one could assure was that I wouldn't feel any pain. In fact when I asked if I might yell in pain, the doctor told me that "some people do"... I was excited to hear this. While the procedure was expected to take about 15 minutes, some complications could extend it to 30-45 minutes. Now I'm jumping up and down with joy!

Then it's THE day. I was told that the procedure would take place in the early afternoon. I asked Robbi to come up to the hospital for 1pm. 1pm passes... 2pm... 4pm... 6pm... Robbi had gone down to the cafeteria several times to make calls. I'm having mild anxiety fits, all the while trying to maintain my composure.

The doctor arrives and there's a flurry of activity... Robbi commands that they dose me up again with Adavan, (or did she say QUAALUDE?). Robbi was a wreck, too. All along, these last few days, I had succeeded in winding her up well beyond the tolerance levels that anyone should endure. We all agreed that it was best for her to go downstairs. I think the doctor felt that she (the doctor) would be safer too. Robbi had the look on her face that said to the doctor, "If he feels any pain - so, too, will you!"

As soon as she left, I felt alone. Then just as the doctor was asking me to roll over onto my side - in walks Jayme. I cried... or at least I think I did. I know the sedatives were working because everything in my mind was distorted at that time. But, there was Jayme - and I wasn't afraid. Even the drugs hadn't achieved that. Jay's voice asking me, "Are you OK Dad?", brought me back into focus. I was able to respond and assure him that I was fine - and I BELIEVED IT TOO! Onward we moved... First, I'm on my side and there is no coughing. Jayme talks to both the doctor and I. He asks her what she will do at each stage, and then asks me if I understand the what is happening and how I'm doing. Next the doctor informs us that she will penetrate the bone that there is a possibility of pain... I feel the needle enter - no pain. Next up - she will remove a sample of bone marrow - this is usually the most painful part - NOTHING!!!!!!!!! It's done and I'm unscathed.

The whole time this is going on, I'm so happy that Jayme is there by my side. This is one of those defining moments in a family. Back in 1990 when I had the flu - and I thought I was going to die (Yes, I really did), I awoke from a deep sleep and feeling like shit, and found that Emily (then 4 years old) was sitting next to me holding my hand. That was a defining moment.

Our family is complete - and always has been.

3 Weeks Later... That was a long nap.

2007-12-06T16:47:00.000-05:00

Now, 3 weeks later, I have several updates…

Most important to note is that I do not have Pulmonary Arterial Hypertension (PAH). Yesterday, I underwent a procedure called a Right-Heart Catheterizing. It means that they put me on an x-ray table and insert a probe into the main vein in my right groin area… that probe is moved up through the vein into the heart and then into the main pulmonary artery. The probe is then able to measure, (quite accurately, I’m told), the blood pressure between my heart and lungs. Although preliminary indications were that this pressure was much too high, this test showed that it is well within normal limits.
With Scleroderma, there are several ways for the disease to manifest and create more complex symptoms. PAH is one of the more severe symptoms. Although it is treatable, with several new drug therapies, PAH, (along with renal failure), is perhaps the primary cause of death among Scleroderma patients.
Yup, we were very concerned.

{GEEK UPDATE: Even though I was mildly sedated – because I was scared and I asked them for some drugs! – I was able to see what was happening throughout the process. On a large screen (unknown if it is plasma or LCD) I watched as the probe moved into my heart. I couldn't see my heart but I saw my ribs in the x-ray. It’s amazing. HOW DO THEY KNOW WHAT THEY’RE LOOKING AT? I also saw the graph results of the pressure tests. I couldn't read the values but I heard everyone in the room, and they seemed pleased.

Now that we have these results, we are able to assess our current status. I’ll try to bring you all up date…

1) Still have Scleroderma.
2) Still using oxygen 24 x 7 – although I am steady at 4-5 liters/minute.
3) Coughing is greatly subsided.

When I got home Robbi had the house set up with a hospital bed, Oxygen machines, portable oxygen, visiting nurses, and home health aides, and our friends were mobilized to provide support in any way that we needed. After the first night both of were worried that we might not be prepared for all the worst that we could imagine. We had to figure out so many logistics such as how to change from one O2 set up to another… was I going to be able to get up in the middle of the nite and pee, or should I use the urinal, or the commode? These don’t sound like complex issues but when you can’t breathe well everything feels scary.
On the second nite home, I woke up coughing and then realized that one of the O2 lines had come loose. Later that day, Robbi had a talk with Gordon, our friend and my primary care physician. He helped her realize that she is better prepared than she was feeling. She knows what to do in the worst case scenarios – CALL 911! He assured us that everything else will work out as we get used it.

As we began to settle in and were coming to grips with the intensity of my condition, Gordon came over to have a real heart-to-heart - as my doctor.

This is when it gets tough, and we knew it… No matter how often you say to yourself, or even aloud, it never ceases to amaze me that I have an incurable condition. I don’t think I’m in any type of denial. Perhaps it’s just that we have difficulty relating to the finality of life. Perhaps it is the minds way of keeping us focused on living… maybe it’s denial…

Gordon’s visit was beautifully intense.
First on the agenda was a review of my medical status. At the time, everything was much the same as today, except that the PAH has now been removed from the slate, (at least, for now).
Secondly, we walked through the short term and long term probabilities. No one claims to know how my condition WILL progress. These conversations can only take place within the scope of possible / maybe / could be / and sometimes. Within this context we talked…

After Gordon was quite sure that Robbi and I understood the full scope and seriousness of my condition, he asked us what we knew of Hospice. Like most people, our experience and knowledge of Hospice is related to a dying person. My personal experience was with my mother who was placed in a Hospice 1 day before she died… and my father who spent 2 weeks in a Hospice facility before he died.
What Gordon described to us was nothing like either of those situations. To get the real low-down he recommended that we take a meeting with the UMASS Hospice Group – and we did.

Flo (the director) and Julia (the medical officer) came to discuss and introduce the process. Hospice is not about dying. It’s about comfort. It’s about being prepared to respond to life altering situations with care and knowledge. It’s a caring network of professionals who work with the patient and all of their family. Everyone is an equal part of the process.
As we move through this entire process I will give my best effort to describe and comment on the events.

For now, I will rest, as I often do…

If I have left out things that you are interested in, or that I've left unexplained, please comment to this posting or email me at DSRUBY@VERIZON.NET. I am in the process of closing down the Desktop David website. Soon I will disable the email boxes associated with it.

Until recently, I’ve had a rather simple time.

2007-11-15T17:03:00.001-05:00

Until recently, I’ve had a rather simple time. Then about 4 weeks ago I began to have more breathing issues. I gradually had to increase my O2 intake, and then 2 ½ weeks ago it got so bad that I had to be admitted into the hospital, (11/1). I just got discharged from UMASS Hospital Tuesday, (11/13).

I was admitted with bacterial infections (a type of pneumonia) AND a major flair-up of alveolitis. I was treated for 10 days with heavy doses of antibiotics, to fight the infection... then they saw that my red cell count had fallen very low. They did a bone marrow biopsy and the results are that this condition is "Anemia of Chronic Disease". I received 2 units of blood and that got the count up to a better level, although it is still lower than it should be. The Hematologist / Oncologist that treated me was concerned that my bone marrow might have been damaged by the Cytoxan during the SCT. Thankfully, it seems that that is not so. I am on 4-6 liters of O2, 24 hrs / day. My oxygenation has been up and down but the oxygen is needed because I just don't get enough volume into my lungs. A couple of times they had to put the mask on me and pump in 10 liters a minute. I can't walk to my bathroom without needing 15 minutes to recover - and that's with O2 running.They sent me home because there isn't anything they can do for me in the hospital. Robbi got a hospital bed delivered and I'm just glad to be back in the house.

We have been working out the logistics so that I have sufficient O2 to get out of bed and walk to the bathroom. Sometimes I use the urinal bottle, in bed, so that I don’t have to struggle to catch my breath with high volume (10 ltr/min) O2.

I am officially retired from my business, as I can't keep even simple appointments. This is a difficult decision for me but it will allow me to focus on my family’s needs. My business was more than a job – it was an extension of who I am. I loved helping people with their technology issues, and we developed lasting relationships. I know their children and pets… we talked about our lives… many of them would feed me while I worked away on their computers. When Robbi and I asked for help to raise funds for the SCT, many of them not only contributed – they took active rolls as fund raisers. I am grateful for my family, friends, and community.

I'll be starting up on Cellcept in a few days. The liver counts are slightly elevated so my doctors wants to stabilize them before I begin the chemo. The dosage will be higher than I had last time I took it – last year. If all the alveolitis turns to fibrosis, it will be real bad. I can hardly talk for a few minutes without coughing away. After all my concerns about the bone marrow biopsy, I was fortunate to have a very simple procedure with very little pain. For most people it is painful. I was so anxious that I had them give me a double dose of sedative. I am a baby after all. Now that I’m home I spend the whole day in bed. I get up to go to the bathroom.

Last nite, I ate dinner with Robbi, Jayme and Emily, at the table. My stamina was so low that I had to go right back to bed and I coughed for about 15-20 minutes until the O2 settled me down. It was the first time we were all together in the last few weeks, so it was worth it.

We have a visiting nurse each day, for a week or two, to monitor my vitals, (BP, pulse, fluid retention, oxygenation level, etc.). I also have an aide who comes in to help me take a shower - it's just too exhausting to do it myself.

I'm trying to gain some strength so that I can do more and Robbi will need to do less. It's really important for her to have some independence. She also has work to do! She is the only earner in this house now.

Once I begin to get the chemo, it will take 4-8 weeks before we can expect to see any results. Even then, the results are unpredictable. The last time I took Cellcept the Pulmonologist saw slight improvement in my breathing. It didn't clear up any of the fibrotic tissue, but it seems to have eased the swelling (alveolitis) in the lungs. If we get that kind of result again, it would ease a lot of the problems I have had this week.

Stay tuned... lots of work ahead...

If I'm Blogging, I Must Be Sick

2007-10-31T08:15:00.000-05:00

It's become evident to me that I tend to write most when I am physically challenged. Now is no exception.

I am running a fever of over 100 degrees... I cough when i walk to the bathroom... I have to sit in the shower again - something I haven't done since March. I have no tolerance for activity - either mental or physical. I can't even talk to clients. I can't help them....

My CT Scan shows increased alveolitis. That's the big one for me. Aveolitis is the inflammation in the lungs that precludes the formation of fibrotic tissue - which is the scarring of lung tissue. This could (likely) mean that the stem cell didn't take hold. The one thing we were holding out hope about was that I hadn't had any alveolitis since coming home from Maine. As the months passed, and alveolitis did not form, we told people - every month without it is like extending my life. The extension is over.

I have an appointment with a Pulmonologist tomorrow to review the scan and determine if there may be an infection as well.

stay tuned............

As I move deeper into Year #2

2007-10-30T08:21:00.001-05:00

As I move deeper into Year #2, I am frustrated by my own whining and lack of incentive. While I've never been a Type A personality, neither have I been a complete couch-potato. These days I just don't get myself up and around as I feel I should...
So what's happened in the last 2 months?

1) My visit to Dr. Ann was good. Although my overall status had improved less than she would have hoped - she was much encouraged by my physical look. She said, "You don't look like someone who is dying." For most people that may be a "left handed compliment", but to someone with a terminal condition, she was voicing tremendous hopefulness. Actually, most friends and family tell me how good I look...

2) Jane Erickson and I met face-to-face and hugged!!! She and her husband, and Robbi and I were taken to dinner by Ann and her husband. It was a wonderful evening - just to look at Jane. There are feelings and understandings that can't be experienced fully without the involvement of all available senses. To watch and listen to her as she spoke with Robbi and Ann... to see her look at her husband during the dinner... to hold her when we met, and when we said good nite... it was beautiful.

3) I was denied SS Disability. After chasing the bureaucracy round and round... I've begun the process of reapplying. There are no guarantees, but we are fortunate to have our friend George to help guide us through the legalities. George gets a GAME BALL (remember those?).

4) We passed the anniversary of the dates when we went public with our appeal for help. It was an emotional passing of this milestone - especially as we shared the holidays with most of the friends who were directly accountable for the success of our fundraising campaign. A year later, we are able to share a wedding, a Bat Mitzvah, the High Holiday Services, and casual dinners and conversation. I am grateful for my family, friends, and community.

5) I've been taking steps to get my physical condition honed. I've been participating in physical therapy and I went to an acupuncturist. Going to PT gets me motivated to get up and out of the house. As part of the program, I've gone to the pool session and it felt good. Even the next day I felt OK and motivated. The acupuncture was not so good. It was weird on several levels... perhaps it was my response to this practitioner's style or personality? Perhaps. The room was very clinical and I expected a more calming environment. He used electrical pulse - connected to the needles, and I expected a more "organic / natural" approach. Then he prescribed a mass of herbal supplements that were manufactured in China... call me stupid (or even racist) but I don't trust much of anything to be ingested, that comes out of China these days.

6) I followed up with my Endocrinologist to see if the Testosterone therapy has been working. It seems that the benefits are that my depression is lower in intensity, and my energy level has increased. Now, the doctor acknowledges that the meds I take for ADHD may have the same affect and that we may never know which is working best... however, he and I discussed the pros (some) and cons (none) of increasing the dosage to track the differences. My dose is moved up. Stay tuned for updates - Will I be banned from the Major League Baseball for using human growth hormones? Will I ever get a sexual urge again?

7) During the last week, I have had labored breathing. Gordon had difficulty getting a good reading on my oxygenation. My fingers are yielding less accurate data. He's concerned that I may have an infection, but the xray is inconclusive...

8) I'm scheduled to get a PFT (lung function test) and see Dr. Fisher, on 11/7. I am anxious about the test. NOT the results. I can handle the those. It's the actual testing that scares me now. I hate the process because it makes me cough so violently that I throw up and it takes me a real long time to recover - and then we run another test and I go through the coughing rampage all over again... It SUCKS!!!!!!! I wonder if there is another method.

9) Called Fisher's office about trouble breathing... they scheduled a CT Scan for this AM. I have an appointment with a Pulmonologist this Thursday.

10) I'm now using Oxygen all day long. I don't know if it helps but until we can figure that out I will continue to use it. My temp is rising every night to about 99 degrees.

11) Jane has been having a tougher time these days. She thinks that it may the change in the weather. Maybe...

There is news about Dr. Ann - She is on a Leave of Absence from MaineGeneral. We don't know why or for how long. These matters are never discussed publicly.
For me this is not as critical an issue because I have a battery of medical resources. The ones who are most affected (besides Ann and her family!) are the que of patients who are lined up for treatment at ME General.
Jane is in the process of referring them to Dr. Burt at Northwestern University in Chicago. You may remember that I have spoke with him: a) He is the one who Ann worked with before coming east to UMASS, b) He is running the official study that is just like the treatment that I got, c) he is a very passionate and dedicated professional.

I will begin to assist Jane soon. The burden is too great for 1 person to bare.

ONE YEAR AGO

2007-08-29T18:45:00.001-05:00

August 30, 2006 was the day that Robbi and I first met Dr. Ann Traynor.
August 30, 2007 we are returning to Maine, for the first time since we came home in February.

This is the first official visit to Dr. Ann... we had dinner with her at her sister's home in July. Today I had my first office visit with Dr. Bonnie Bidinger, since April. She had her baby and just returned to work.
Bonnie checked my Skin Score [this is done by assessing the thickness of skin over 17 areas of the body... it is a subjective test with a certain error margin]. My score today is the same as it was in April - which was the same in December 2006...
I hear from others (Devona and Amy, who both had their SCTs in April and May; and Jane, who had hers 2 years ago) that skin softening is one of the major benefits that they experienced. Robbi wonders if it has any thing to do with female / male differences. Aside from that (which may be a factor), what if Scleroderma is genetic (as opposed to viral)? Could it be both genetic AND also be able to be contracted, like some cancers? We are probably many years away from answers.

The other major development of late is that I have been using supplemental oxygen. On August 3rd I had breathing tests that showed a slight decline in my lung performance. The difference between this test and the previous one is small enough that Dr. Fisher (Pulmonologist) wants to wait until the next one to see if it is a true data point or an error. The test in October will give us a better idea.
The other test was to measure Oxygenation - how efficiently the body uses Oxygen. During a walking test, this number should be 90-100% - my number was 88%. This number qualified me for insurance-funded oxygen services. I take the tank when ever I go out. I use it most times when I get into the car, and sometimes when I get out to do something. When the humidity levels rise I need it more often.

I hope to have more stuff to write after meeting with Dr. Ann.

Stay tuned...

Road Trippin' - 7/28-7/30/2007

2007-08-10T13:52:00.000-05:00

Suffice to say - we made it and there were no problems along the way. If that's all you care about, then you should scroll along to the next posting. There weren't any spectacular stories... just me and Jayme driving for 3 days...

For more details, read on - - -

The car was so overloaded, (backseat, trunk and roof bag) that I was sure the tires would all explode under the weight. WHY IT DIDN'T IS ANY ONES GUESS.
I chose to drive us out via a route that wouldn't take us up steep mountain roads, like the one we used when we arrived 2 years ago. I feared that we'd blow the engine. Now, I never expressed any of these fears to Jayme. He was so full of excitement to be packed up and heading off to a new career - (more on that, later) - I didn't want to dampen the enthusiasm and joy. besides, it helped me feel good too.
The only normal space in the car was reserved for the driver. As the passenger, we had to straddle the oxygen machine, (which took up nearly the whole floor), and keep the maps handy. The primary tasks of the whole trip were about tracking the progress - how far we expected to travel, by what time... how many miles we needed to drive, by days end, so we could be home by Monday evening... when to stop for meals, gas and 'nature'. We did it all really well. Only once did I make Jay pull over on to the side of the road because my Lasix (diuretic) worked faster than we could drive to the next Rest Area.

A lot of the conversations dealt with the thoughts and feelings he was having as he left his friends and life behind, in NM. It wasn't as traumatic as I expected. He had been preparing for this for nearly a year and was ready. So we began to talk about the life he was coming back to, and the one he wants to build. There were discussions about living at home, after being on his own for so long. We talked about the challenges he was to face - finding a position in a new career path. I think Robbi and I are more anxious about that than he is. Perhaps it's because we are tainted by our own negative experiences and Jayme still has the idealism that flourishes in our youth... or maybe we know how difficult it is to build something from nothing (we have both started our own businesses), he he doesn't know JACK SHIT... I hope it's the former.

So on we drove... 750 miles on Day 1... 900 miles on Day 2... and 750 and walking in the house at 8:30 PM on Day 3. On Days 1 and 2 we drove till about 1 AM. We slept in comfortable hotels, and ate well all along the way.

I was able to sustain myself fairly well. We stopped for gas, etc. about every 2-3 hrs. Getting in and out of the car was a pain in the ass... more specifically, the knees and ass. Jayme drove each morning and I took on the middle hours. This worked well because I not only get tired, but irritated as well, as the day goes on. Jayme was so good to me. He doesn't even flinch when I snap at him. In fact, he hold his own. Just like Emily, he calls me on my shit, and does it in such a way that I know I'm being irrational and so I back down. Jeez, these kids are good people.

I used the oxygen fairly often. A lot more than I expected to. Every time we go out of the car, I used it when we settled back in. The weather was very hot and humid the whole way.

So, now we are back... more to come soon...

News From The Borderland (Las Cruces, NM)

2007-08-09T13:34:00.000-05:00

THE FOLLOWING IS NOTES FROM THE 7/25 AND 7/26/2007 - When I traveled to New Mexico.
====================================================

The saga began, yesterday (July 25th) , at 8 am... Robbi and I, neither of whom is usually doing anything that requires eye-hand coordination at this time of day, were on the road to the Providence airport. Although my flight was at 11:15 am, I had to get there very early so that I could get my special breathing equipment checked through security. Aside from that, I move very slowly and knew that I was going to get scrutinized for all the electronic stuff I travel with. I was also requesting wheelchair assistance to get me to the gate.

The ride to the airport was emotional on several levels. For one, it's always that way when either Robbi or I are traveling to be with Jayme. Which ever one us is going - that one is doing the work of both of us... 1 hug from both parents... 1 set of eyes that looks at everything as though we were both there... it's a mission of love.

Secondly, as noted in the previous posting, Robbi and I have many things to work through - and last nite I added another one to the mix. You'd think that after 26 years I'd figure out how you avoid land mines... and how not to create unnecessary problems. Think again.

When we parted at the curb, I cried. In the best of circumstances I hate leaving her... this time was extra tough.

Walking is tough normally, now I'm walking with a wheeled duffle bag, 15 lbs. of computer on my shoulder, and the Portable Oxygen Concentrator, which is also a wheeled cart. The Transportation Security Agency(TSA) had just raised the Alert Level to ORANGE! - Like that will ever make a difference... (Who are they trying to scare??? Terrorist?) The raised level means that everyone is expected to do all the things they get to paid to do every day. For travelers - it means nothing.

The flights were fine. These days, every plane is booked solid. As a matter of fact, each of the flights I was on (and several others at the same gates) were over booked and the airlines were offering incentives to anyone who would delay their travel.

The total travel time for me (10 hrs) got me into El Paso about 7 pm (9 pm at home). Jay to me to dinner and on a tour of the TV station he works for (until Friday). It was cool... very cool. Got to sleep about 1 am (my time).

The air out here is pretty dry, but it still got to me. I had trouble sleeping. Even though Jay's condo is air conditioned, my breathing was labored throughout the nite.

Today, I got to see Jayme work. He is a true professional. He interviewed family members of a guy being tried for child abuse and murder. I stood there and watched him talk with the guy's brothers and prepare them for the live interview, for the 12 pm news. The jury had just begun deliberations and these brothers were calm and articulate and believing in their brother's innocence. As soon as they were done, he shifted gears to catch up with the DA in the parking lot to get her feelings about a situation that had just developed last nite - a home invasion during which the home owner shot at the intruder. I was standing in the background, hoping to appear like I belonged with the cameraman, when the DA cut Jayme off and asked who I was. Jayme didn't skip a beat, (while I tried to evaporate into thin air), and he immediately introduced me, and joked and told everyone how I had come out to NM to help him pack and move home. Then it was right back to questions about the home invasion issue... When you realize that the DA and her assistants are real people dealing with real (often tragic) issues, and they are talking with MY SON as he searches for serious answers... it's just too awesome.

After seeing all that, I had to go and find a way to pack Jay's car to fit everything that we wanted to bring back East. I found a roof-rack set that I had to assemble. It was about 95 degrees outside... Robbi says that the New Mexico weather is like living in front of a hair dryer. I have to agree. Everytime I was outside for more than a few minutes, I had to struggle back upstairs into the condo, to suck on the Oxygen machine. I was so glad that I had it to rely on. It's not that it was a miracle worker, but it helped me calm down and not struggle for long periods of time. Perhaps it was as much a psychological benefit as it was physical.

Friday nite, the 27th, Jayme's best friend Andrew (and his daughter, Eileen) came ove to pack the car. I wasn't able to do anything other than sit and give orders. They were all very patient with me and did a great job of packing up 90% of the stuff. The rest would wait for Saturday AM.

On Saturday, Jay and I finished the TO DO list that included all the things that Robbi wanted us to do to "present" the condo for potential renters or buyers... finished packing - which still amazes me that we were able to fit it all in! Then we hit the road!!!

More about that in future posts...

Where Are They Now?

2007-07-23T06:38:00.000-05:00

The community of SCT recipients is growing... The ones who I communicate with regularly are Devona, Jane and Amy. Devona and Amy went to Northwestern Univ., in Chicago. They worked with Dr. Richard Burt - who is leading the team that Dr. Ann (the Mad Scientist) started with. Jane and I worked with Dr. Ann. There have been severalothers who have been evaluated for treatment and now Sandra is lined up to begin, perhaps this August.
First, a quick update on those that have been through it...

Amy's treatment spanned several months - March into May. The details are available on her blog. Like me, (and I suppose most people who go through such an intense process), there has been a long period where she hasn't wanted to post updates.
I won't speak for her - I can only relate to the sense of not wanting to, or being able to relate my feelings in a public forum, when most of the time I didn't know how to relate to MYSELF and Robbi. It is only in the last week or so that I have risen above that foggy feeling. I suspect that Amy (and Devona) may be intensely focused on their internal recovery - physical and mental.

Devona's treatment overlapped Amy's. They met in Chicago.
Both of them have experienced physical complications that were more intense than I had. They had extreme nausea and extended loss of appetite. When Devona was about to be sent back home to Texas, she had a brief illness and had to go back into the hospital for a day or so.

Amy is a mother of 2 very young children. The physical and emotional demands on her are greater than I can imagine. Where she must watch over their every-moment development, I have only to let Sam (our cat) outside and in again... and keep him from editting my blog by walking across the keyboard.

Seriously, my truest challenge is re-establishing my relationship with Robbi - from caregiver/patient, to husband/wife. To evaluate the affects of a chronic illness on our relationships is an unrealistic quest. Robbi and I have known eachother since October 1980... we were engaged 2 1/2 weeks later... and married 6 months after that. We were experiencing our lives together for more than 20 years by the time Scleroderma was added to the mix. The issues we discussed before then were still there to discuss and then we had that one more to learn about together... and, today, we continue to work through all of the open issues as part of our partnership.

Jane continues to improve...

She celebrated her 60th Birthday last month! She has been living with Scleroderma for nearly 10 years. She is soon to celebrate the 2nd aniversery of her Stem Cell Transplant.
In the last year she has stretched her endurance to be able to direct an opera. That is quite a commitment of time, patience (the actors were all children!) and energy. I get exhausted when I sit in one place for an hour...
Jane has reached the endurance level of being able to exercise without having to get supplimental oxygen. I don't know here lung performance numbers (she tells me that I focus too much on the numbers stuff), but these are results worth noting. She tells me that some days are tougher than others. Occaisionnally, she just has to take a nap.
Her skin has returned to normal in all areas except her fingers.

One thing that Jane seem to share is a brain dysfunction. She refers to a condition called aphasia - which is when she has trouble speaking certain words - as though her brain is stuck in neutral. I feel like I have a cognitive glitch - when I can't think my way around issues. Lately, I'm having less incidences of this.

Jumping around to more things...........

This Wednesday, I am flying out to Jayme! I will be supervising his final packing-up - and then co-piloting the drive back to HOME!!!
YES - Jayme is moving back to our home. I won't spend more time to explain why he is leaving New Mexico (as that is his business), but you can be assured that it is ALL GOOD.
For my flight, I will be traveling with a Portable Oxygen Concentrator. This is a device that takes ambient air and forces it (through the nose hose), to supplement my breathing. In a plane, the air pressure is equal to 8000 feet, which is very thin. To get it OK'd with the airline I have to get a note, for my Pulmonologist, (as well as a prescription) that says that I have been checked out on the operation of this device. I have to prove that I can handle any alarm signals, so I don't scare / annoy the other passengers. Perhaps parents should have to get such a note that qualifies them to bring their kids onboard... just kidding.

If all goes well, my next posting will be from Las Cruces, New Mexico. We expect to be driving back, to arrive home about 8/3.

Stay tuned... film at 11...

I AM PLEASED... REALLY

2007-07-18T19:37:00.000-05:00

After yesterdays posting I got a call from my sister, Linda. She felt as though my tone was much to drab, considering that my PFTs show that I am a lot better than we would have expected - if I hadn't had the procedure in January. Linda can "hear" my tone, all the way from Seattle, WA... It must the way I type...

Fact is, she's right. She is also correct when she says that I have a lot to be happy about. My excuse for being so "clinical" was that I am always trying to provide basic information without clouding over the facts with hopefulness and false expectations.
I get carried away sometimes.

So here is the touchy-feely report:

My breathing tests are level for nearly 7 months! This is very cool... Since I was diagnosed with Systemic Scleroderma (SSc) I have never had such a long period of stability. This is not to be taken lightly... nor does it mean that the SCT is working... but we will address those realities on another posting...
Since I am alive and better than I would have been - Linda asked me to express my genuinely happy feelings, so here it is... YAHOOOOOOOOOOOOOO!!!!!!!!!!

Phew, now I'm out of breath and exhausted, so I'm going to finish watching the Sox game and go to bed...

Sweet Dreams to all...zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

A Moment Above The Fog

2007-07-17T16:06:00.000-05:00

This is the first time since the beginning of April that I have had any desire to contribute to my blog...
I awoke at 4:30am yesterday and felt as though I had more alertness than I have experienced in many weeks.
A lesson I've learned is that - difficult days are not the end of all good times, and good days are not the end of difficult times... If I can hold onto this moment of clarity long enough, I hope to be able to update my records... The most challenging task that I want to advance is to keep ideas and information flowing, regarding the affects of my whole experience. Although the number of readers of this blog is dwindling (down to about 5 a week, from nearly 100), I need to document the story... for anyone who might benefit. I still have a desire to help someone with this knowledge / ideas.
First - What is the state of my recovery?

Oi... is seems so daunting a task to try to summarize the last 3 months.

1) According to my latest Pulmonary Function Test (PFT), aka "breathing test", my lungs are performing nearly exactly the same as they were in December 2006. That means that for nearly 7 months they have maintained at the same level - which is the longest period of stability I have had since my diagnosis.

---"Is this the result of the stem cell transplant (SCT)?"---

It is too soon to say that. Most likely, this stabilization is related to the high dosage chemotherapy that was part of the total treatment process. Jane Erickson, my mentor, has told me that her lungs are improving. Her SCT was performed in August 2005. The medical studies, that track results of our procedure, tend to report only results that are at least 1 year beyond transplant date.

2) The condition of my skin has remained the same. Most people who have SCT report a great reduction in "skin involvement". I haven't. It hasn't gotten any worse either. The contracture of my fingers has increased, perhaps, very little - left hand is contracted about 35-40 degrees, and the right hand is at about 50-55 degrees. My mouth is restricted about the same. Compared to many people who have sever skin involvement, I'm not bad at all... I can eat, and type... life is good. My range of motion is decreased. Most days I have trouble washing my left arm pit. That is a new development... or should I say un-development?

3) General physical condition is slightly degraded, since last December. Although my breathing is generally the same, my weight is down to about 165. My appetite has fluctuated and generally is OK. I eat 2+ meals a day and snack several times. My GERD (gastric system involvement) has been managed fairly well with Nexum and other meds. My muscles have atrophied. It is kind of the 'chicken vs. the egg' / cause and effect issue - am I weak because I don't move as much, or I don't move as much because I'm weak and achy??? Everyone in my family has an opinion... My brother-in-law (whom I love dearly) thinks exercise is the cure to all ills... and most people tend to agree with him. Interestingly - none of them is experiencing a chronic condition, first hand. Robbi, on the other hand, lives by the "air out your ass" method. This method keeps me aware of myself in the "now"... not focused on the pain, but with an intention on doing "something". Sometimes that means walking to the mailbox, driving around to do errands, or simply going for a ride with Robbi to get an ice cream cone.The most important thing I do every day is to focus on being productive. Sure there are days when I feel like a mush-brain (who doesn't?). The key is to do "something"!

4) Each day, when I get up, I have to assess the latest circumstances. Yesterday I awoke very early, and very alert. I took my meds and started to do things around the house (more about that stuff later). Later, I ran some errands and after an hour I began to feel like I should be home rather than driving around. By mid-afternoon I was on the couch, reading. I spent time on the phone with Dr. Ann's next SCT patient (more about her, later). By 7pm I was mentally tired and just watched the Red Sox and talked with Robbi, Emily, and her boy friend. Asleep before 10pm...

5) Since coming home, I've been through various stages, or events. Although some of them were serious issues, and had the doctors running around and guessing, Robbi has continued to be the best manager of the overall situation. Many of my medications have been added to, increased/decreased, discontinued and restarted. For the most part, I take more meds now than before I went to Maine.

---"So what does all this mean, for me, now?"---
The overall process has been an experience that has changed my life in ways that I hadn't anticipated. --- How much of a cliché is THAT??? --- What I mean is this... I think I am a pragmatic person. I learned as much as I could about SCTs and have maintained the lead role (with Robbi) in managing my health care. Together, we have accomplished things that people told us we were crazy to even attempt. We continue to baffle the majority of people we deal with, in all aspects of our lives. With all of the information, all of the support from caring family, friends, and talented professionals, and our own chutzpah and intuitiveness - we are confronted -daily- with new situations that require new or upgraded skills to be addressed. "It's always something."

Barely 2 months after I arrived home, I made several attempts to get back to work - to be Desktop David. Protected with mask and gloves, I ventured into clients homes to troubleshoot and resolve issues. I had limited my commitments to just a handful of high-priority clients and situations. I was slow moving and very careful to limit my physical exertion. Then I was unable to keep up the work load. It knocked the shit out of me. There were days, after some assignments, when I would go to bed after supper, and I wasn't able to wake up before 11am the next morning. My doctors suggested that perhaps I was pushing my self too soon and too fast - YOU THINK????????
I shouldn't be too sarcastic. After all, I'm the one who thought I could defy medical science and recover from all that I went through in 1/4 the expected time.
---Sometimes you eat bear, and sometimes the bear beats the crap out of you!---

Here it is, mid-July, and I am rarely able to assist clients. Mostly, I've been able to provide telephone support and even then, in a limited capacity. For several months I relied on Robbi to handle a majority of household tasks. Of late, I am able to take care of many of them... or at least to assist her in doing them. The main focus of my efforts has been to take as much of the burden off of her as I can. The one burden that I am not able to assist with - and the one that is the source of greatest stress - is the financial burden.

WHERE TO GO FROM HERE?
When I have days like today, with some mental clarity, I think often about what I may do with all this information and experience. Jane Erickson has developed a web site and spends a lot of her time mentoring others (like she has done for me), to guide them onto the path of treatments. She is focused on informing people about the benefits of the protocol we both were treated with - vs. the SCOT Trial, and it's use of full-body irradiation.
Throughout the process, Robbi and I have faced many issues for which the best resolution was either (a) not yet standardized and easily available, or more disturbingly, (b) hidden from our sight.
It's expected that when you choose a new or experimental procedure that there will be many untested choices to make along the way. So you gather information and ask for assistance from professionals and others who have traveled that road before. What you need to be aware of is that (as always) everyone of those people has their own ideas / prejudgments / agendas - and will be motivated to recommend solutions to you based on those matters. Sometimes, upon reexamination of those recommendations, you may find that your best interests were in conflict with those you wanted to trust.
I am not trying to be cryptic... actually I can be quite specific: Medical advice is provided by professionals, who are themselves beholden to multiple masters - including insurance providers, pharmaceutical companies, hospitals, and professional associations. Anyone of these groups may (and will) influence the advice that you will receive.
Why have I rambled on with this dark view of the medical profession? Because there are ways to minimize the negative affects. Robbi and I were able to - but not without some difficulties. The lessons we learned may benefit others.
++++++NOTE++++++
This commentary on "medical professionals" is not to be taken as a criticism of any specific persons. If I have had any specific concern with any specific person, they already know of it. So if you are reading this passage and wondering, "Is he referring to me?" The answer is "No." I am referring to specific situations that Robbi and I faced and unless we brought a particular concern directly to you, then you may be assured that you are not indicted by my commentary.

On that note - and because I'm mentally tired from all this thinking today, I will end this posting.
At this time I expect to pick it up again within a day or so. As long as I can keep the cognitive processes flowing, I will continue to update. There are a lot of things that I began to discuss back in April that I may address again...

WHY CAN'T I BREATHE AS WELL?

2007-04-02T12:18:00.000-05:00

This is the question that I've become consumed with these last few days.

It began last week, when I sensed that I had less tolerance for walking and doing simple tasks. Then, Thursday nite and Friday morning it became more acute. I was struggling to breathe when I performed very minor tasks (by previous standards). I was quite winded after walking up the stairs to the bedroom. Then I was winded just from walking to the bathroom and back to the family room (about 100 feet).

I called my primary care doctor, late Friday afternoon. Thankfully he is also a friend and has a personal understanding of me and my condition - he scheduled me in immediately. It helps to have a doctor that trusts you as well as you trusting him/her. It assures that everyone knows that when you call, late on a Friday afternoon, it means that you have to address the issue RIGHT THEN - and not the following Monday.

The examine showed that my oxygen levels were down significantly. I was always in the high 90's (98-99%) but today I was running in the 88-90% level. This is a bad thing! My doctor took me for a stroll in the office to see if the levels were maintained while walking... they drooped slightly - again - not good. He sent me to the Xray lab (across the hall) and within 15 minutes we were observing my lung pictures. Compared to the xrays that I had had, just a week earlier (about another little issue), this one showed significant fluid in the lungs. WHY? The possibilities are many, so I won't list them now... none are good... some are more treatable than others.
Right now we are in the midst of blood tests (for kidney function), and echocardiagram (for heart & lung circulatory functions). These tests will be completed with results by late tomorrow...

In the mean time, I am operating at a reduced level of activity... and left with much time to ponder the questions that I posted earlier.

A note of importance: TODAY IS OPENING DAY FOR THE RED SOX!!!!!!!!

Stay tuned for news on all issues, as they develop...

NOT A HAPPY ROLE MODEL

2007-04-02T09:41:00.001-05:00

It seems like just 4 weeks ago that I last posted. Oh yeah, it has been 4 weeks...

If I were to follow my gut feeling, it might be another month before you saw anything new. I can't believe that there are still 30 of you who regularly check in to see if I've added anything. How can you do that? Wouldn't you think that I'm all done? That I've finished talking? Well the reason that I've been silent is that I've been hiding. I haven't wanted to talk, or do much of anything.

Feeling depressed... or am I just lazy?? I don't feel like I am able to inspire myself. So how can I continue to inspire others? Physically I had been doing fairly well.
[Last couple of days I've been having a complication and we don't know what it is, but that doesn't explain the doldrums. I'll detail the complications in a separate posting. This posting is just for the wimpy stuff...]
When I was released from the hospital I was so happy that I had reduced my medications to about 1/2 of my pre-treatment schedule. Now I am back up to the full allotment. The only drug I haven't returned to is one that I had taken for many years, to treat ADD. It is the one that I stopped taking, and experienced withdrawal symptoms, when I had the instances of arterial fibrillation. Remember? That is when I was a mean person - and made Robbi cry, and scared a nurse out of my room.

It turns out that I may need to go back onto that medication, as it helps to balance certain brain activities that affect my productiveness and moods. I had thought that I could over-ride the need for that assistance but alas, I am just a human... with a neuro-chemical imbalance... and Scleroderma.

Speaking of Scleroderma: I still have it. I have all of the symptoms that I had prior to the treatment. My recovery from the treatment seems to have been completed - in that I had recovered my ability to move about in the general population without mask and gloves... my breathing was stable and as good as it was in early December... my tolerance for activity was, though not fully returned, nearly recovered... my skin is still the same - I have not seen any softening, as most previously treated people have reported. The skin issue has been a disappointment, I must admit.

For all that I know - that the success of the transplant is measured in years not months - I am still disappointed... depressed, and I can't help but feel that way. Perhaps it is fed by having to explain over and over that the benefits are not expected for many months / years. That the true success is that I might live longer than the 2-3 years that was my expectancy. It does get tedious. But, the questions come from the same people that have literally invested their time and money - and all they want to know is "is it working?" It's a fair question.

Responding to that question has become increasingly difficult, which raises yet another issue - am I ungrateful and rude if I don't want to be an inspirational role model? This is a question that I just now posed to myself as you see it - so I haven't even had the time to consider a thoughtful reply. mmmmmmm - i should probably begin to think these things through before I write & post them. But what fun would that be....

SHOUT-OUT TO FRANCISO

2007-03-04T18:16:00.000-05:00

FRANCISO is in Maine now.
The treatment protocol that he is going through is different from the one I had. He isn't getting the stem cell transplant YET! Hopefully, the treatment he is getting now will prepare him for a stem cell transplant, in about 5-6 months.
Currently, he is using supplimental oxygen 24x7. His lung performance is too low for him to get the transplant just yet.

He has recevied Cytoxan, Campath & Neulasta - the trio of drugs that I received. A few days ago he had a fever that ran 102+! After that was cleared up he developed fluid in his lungs, and that condition is currently being treated with heavy antibiotics. The situation seems to be under control.

Although he was supposed to go home to NJ, this weekend, Dr. Traynor held him over for a few days.

Here is to you, Franciso!

And Game Balls to your son, Dominic and your wife.

HEALING - DAY 30 - 030407

2007-03-02T10:12:00.000-05:00

Sometimes I just don't have the time & energy to sit and write out the events of a day... or even that last couple of days. This is especially true when I'm having a tougher time maintaining my energy level. Sometimes it is because I am so busy using all my time to get things completed that by the end of the day I'm too exhausted to sit and compose a posting.

Then there are days like Wednesday. It was a bad day, and I have no idea how it happened - it just did. I awoke feeling less rested than usual. When I got up, I could tell that my tolerance for exercise was going to be less than usual as well. I was able to do things but had to rest afterward. I went out in the car to take care of some errands but was not motivated to exercise or walk the neighborhood.

My tolerance for exercise has lessened. I assume that this is just one of those "1 step back" moments before I continue to progress.

Friday nite I went to sleep at 6:00pm and got out of bed to start the day at 8:00am Saturday. I felt more motivated, but tolerance for exeercise is still lower than before.

It's Sunday at 8:15am and I'm about to get up and get things done....

HEALING - DAY 23 - 022507

2007-02-25T17:49:00.000-05:00

Yesterday I thought I had an accomplishment worthy of a posting, all to itself... but then, today happened.

Not only had I begun a series of exercises, so that I can begin to strengthen my arms; but I walked the length of our road TWICE! The second lap was tougher to complete but I made it, and kept the pace at a steady and regular pace.

THEN TODAY... which began like most days. Up at 7:00. Pills, cereal, OJ, iced coffee and a book until about 9:00.
When I got out of bed, I felt really good. This, too is common these days. I haven't done much, so why wouldn't I feel good.
When I got ready to pick up the weights, I got a charge of motivation and performed a series of exercises that I had learned several years ago at my local physical therapy clinic, (shout out to South County PT!). After I finished a challenging and rewarding set of reps, I set up a form on which I will keep track of my daily performance. That was cool, but not the complete story...

Then I went for a walk. When I reached the end of our road... I turned right and continued... The route that I took is equal to about 2 1/2 times my previous longest walk - which means that I walked about 1/2 MILE!!! I did this at a steady pace and arrived home without any severe side affects. I wasn't coughing and didn't need to plop my butt into the nearest chair.

And then... I walked again... and further still! This time I continued to walk throughout my neighborhood. I can only estimate the distance (as my car battery died for the 2nd time in 2 weeks time). I believe the distance to be at least 1 mile!!! I haven't walk a distance that even comes close to this, since about 6-9 months ago.

Although I am quite happy with this achievement, it must be qualified on several points. As my condition worsened, last year, I wasn't motivated to push my limits. On the contrary, as my breathing became more restricted my focus became the conservation of my limited resources. Exercise would only wear me out and the benefits were null. So, could I have walked a mile or more? Probably.
Then what is different now? What is my risk and what are the potential gains?

The Difference?
All we know just now is that my body is healing from the affects of the chemo-therapy treatments. It is probable that that treatment may have positive affects, such as slowing, or even reversal of some symptoms. (It is not expected that scarring in the lungs (fibrosis) will be reversed.) The symptoms that have been reported as reversible are ones that (if it is so for me too) would have affect on the quality of my life - including the softening of skin, which may allow me to breathe easier. This may explain my steadily increasing tolerance for exercise.

The Risk/Gains?
I've been given an opportunity. My family, friends, and (an ever widening) community have given of themselves in ways that awe me. I am inspired to take risks. I will not conserve my resources now. I awaken every day with the intent to DO SOMETHING, and keep doing SOMTHING. Walking as far as I can... reaching a little further for an object that fell on the floor... taking on more chores and family related tasks...

There are no limits anymore.
Any point at which I stop doing something, is the point at which I begin to do something else.

HEALING - DAY 21 - 022307

2007-02-23T08:25:00.000-05:00

My mother would be so proud of me yesterday. No, I didn't graduate Dental School. (She always wanted me to be a dentist!) I changed the sheets on my bed. Mom didn't make a lot of demands of me (just ask my sisters) and still, when I would complete the simplest of tasks, she would be so happy.
Changing the bedding, now, is a task that I haven't been able to complete, by myself, in several months - perhaps since October - without taking frequent time-outs. This time, I had stripped the bedding, put them thru the wash and dryer - all the while performing other household chores - and then remade the bed. All that with minimal breaks.

Yesterday, I also found out the U.S. Postal Service (aka - Drill Sargent Academy) has signed on to coach my rehabilitation program. When I got to the mailbox, I saw that they had - WITHOUT ANY PREVIOUS WARNING! - delivered a bulky box, along with the normal compliment of letters!!! This challenged me to use both hands, to hold the mail and parcel, while I walked all the way back to the house. Then when I reached the house I had to shift the load to free up a hand and open the door - and THEN climb 3 steps to enter the house!!!!!!! Is anyone else as amazed as I am that I was able to achieve this impromptu training exercise?

My daily schedule still involves waking up about 6am - make my iced coffee, take my meds, and fix a light breakfast (usually cereal and toast). I listen to Howard Stern, while I read some books (I'm reading 2 different books), check email, and plan my day. I get out of bed about 9-10. Yesterday, I showered, and started chores right away. Lately, I've been working on a new computer I bought for my business (I have to train myself on Windows Vista operating system). Then, by mid afternoon, I sit down with a full lunch (and meds) and watch the History Channel.
After lunch, it's back to work. Most days I have issue to work on that come to us via the mail - "Why were we charged a service charge?" "Reschedule an appointment", "Research the cost of a new insurance coverage option." This carries me thru to dinner and the News programs... then Robbi and I settle in and watch the evening shows... Sometime between 7:30 - 9:00 I begin to crash. Last week and before, I was crashing much earlier. It does depend on how much activity I've had during the day. Last nite I was able to watch "Grey's Anatomy" with Emy (her favorite show) and Robbi, although I napped during the commercials.

Speaking of naps - the greatest invention in the world of leisure!!! Irecommend that everyone take a nap for at least 1 hour a day - usually after lunch. Even if you don't actually sleep, it is incredibly rewarding to slip away from tasks and urgencies to "hide in your own stillness. It is similar to meditation, which is what some people do instead of napping. I suggest that either process is cool. Get away from the schedule of tasks and be within yourself for at least an hour, and you will feel renewed and recharged... for a while. The length of time that you feel better will vary, depending on how long it is before you allow the urgencies to overwhelm your thinking again. That is a variable that we all control, even when it feels like it has a life of it's own.

Enough of the "Davidisms" (my aattempts at sounding wise)...

Here is a shout-out to Devona: she has the dates for treatment to begin in Chicago > March 27th! Thanks to those of you who have donated additionally to her fundraising. She has also received the commitment of travel expenses (for both her, and her caregiver) from a couple of individuals in her business community.
Least the wrong impression be given - Devona is still in need of our support, to address the expenses for the hotel, and follow up treatments (just like me).

By The Way - Devona has been selected for the Stem Cell Transplant side of the trial!!!

Stay tuned.... film at 11.........

HEALING - DAY 19 - 022107

2007-02-21T21:26:00.000-05:00

Walking... walking... and an occasional walk up the stairs. Today, when I walked with Robbi, I kept pace with her. This is the gain for today! Previously, my pace has been slower and she had to keep backing off to let me catch up.
Why is today different from all other days? Because today I just kept walking and didn't worry about the little things, like "only 2 driveways left before I'm able to sit down." it's really cool to be feel better every day.

That said, we all have to remember that "better" means that I getting back to where I was before the procedure.

Thinking of Arden, who is at Johns Hopkins for an assessment.
Devona... Dominic... Wendy... Nancy... Jane... all of whom are moving into treatment or through healing.

Remembering my care team in Waterville, ME... you are all in my thoughts all the time.

HEALING - DAY 18 - 022007

2007-02-19T06:52:00.000-05:00

I've been hearing from many of you - that I need to keep posting messages so that ya'll know that I'm still up and kicking. To all of you in western Washington - HEY! Thanks for asking about me!!!

The process is very slow... hence, my writing every couple of days. It's like watching a wound scab-over. As a matter of fact, with scleroderma, that's often a very lengthy process. I have a cut on a finger that hasn't healed completely in more than 6 months. These days I have to watch it to be sure that it doesn't open and get infected. Hand washing and antibacterial creme are constant activities.

Saturday I drove my car, for the first time in more than a month! The last time was with Jayme - on that day when we snuck into town from ME. It's a liberating feeling to drive. I went real slow, which created a mini traffic slow down and pissed off 10-20 people. Friends and family are surprised to hear that I'm driving. Think about it - all I'm doing is sitting and moving my foot on the pedals and my hands on the wheel. It's less physical that doing a load of laundry... OH, by the way, I've been doing the laundry this week too.

I've been walking out to the mailbox. Today I actually brought a letter with me and raised the flag!

I will make a strong effort to do these updates more consistently.

Good nite............... David

HEALING - DAY 12 - 021407

2007-02-14T12:09:00.000-05:00

First of all - You are ALL MY VALENTINES!

And Robbi is MY #1
==========================

Everyday I experience little gains and then there is a new ache, or I am not able to breathe quite as easily as the day before...
With scleroderma, we learn that, what ever our abilities and/or limitations, we find a way to cope and work with this new limit. Then it becomes THE thing that we can do. It's not that we can't reach as far, or walk as long - it now becomes "This is as far as I'm going to go, so I can enjoy this journey.... so I can complete this task."

For this reason, many of us don't measure how we feel on a day to day basis. When my family and friends ask "How are you today?" I often answer, "I'm good... and I still have scleroderma." Often they laugh uncomfortably. Perhaps I've set them up for a bad joke. However, just like they can't know what I go through, and can't be faulted for their 'not knowing'; neither will I accept accountability for their feelings - whether embarrassed or not. It is what it is.

One difference I've noted over the 14 days since being in HEALING is that my tolerance for activity is on the upswing. Somedays it doesn't feel that way, but each of the last 4 days I've been walking with Robbi. We've increased the distance from a) the end of our driveway and back to b) the next door neighbor's driveway to c) the next driveway after that! Each increase in distance increased the totals by about 4-times. Then yesterday we walked all the way down to the end of our road - about 1/10 of a mile. On the way to the mailbox, at the end of the road, several neighbors drove in and stopped to talk. Not only didn't I talk (to save breaths) but I kept walking and left Robbi to speak for both of us. When I got the main road I STAMP MY FOOT DOWN HARD ON IT! This was a benchmark that I had set, without a specific timeline. Personally, I don't feel the need to set arbitrary dates, to meet challenges that will be forever increasing throughout my life. I look ahead, and as I approach what was once a horizon, I can already see a newer one.
I don't know who said it, except that my first boss used to quote it all the time: "Life is a progress, not a station."

So not only did I walk that distance but for the first ime, I didn't grasp and gasp for a chair when I arrived home. That was as wonderful a feeling as I've had. I was able to move around slowly and feel my heart rate come down to normal... just like a real person!

Oh, I forgot to mention - yesterday I stood up to take my shower >>> for the first time in more than 2 months. THAT was cool.

Today, the weather is "wintry in New England". Although it cold and windy, I'm planning to take a walk. I can be very careful, seeing that my pace is very slow and my steps are about 1 foot long. I'll just have to wrap up my face as the air is really hard on the lungs. Even the cat couldn't stand it today - although he's not so smart... he asked to go out and then scratched to come back in.... then a half hour later did the same thing! Now he's sleeping in some distant corner of the upstairs rooms... probably thinking that May might be a good time to go outside again.

EYEWITNESS ACCOUNT - JANE ( My Mentor)

2007-02-12T11:53:00.000-05:00

Jane, as most of you know was key to my being able to receive this treatment. She has been my mentor, not just through that process; but now, as she and I assist others along a similar path.

The story that we are building includes all of you who have supported me (and others) with love, money, actions, and ideas... it is a living process - without end.
=====================================
Here is Jane's eyewitness account:
=====================================

Dear David:

For me, as mentor, the whole thing was as thrilling as it gets. People ski, scuba dive, I mentor. Being able to witness the transplant, and knowing exactly what you went through, was the most fulfilling experience I have ever had. I watched you get your life back. I know how you felt after day one. I know how you feel after week three. I know that each day you are getting stronger. Each day brings with it a certain amount of fear, but I also know that all of a sudden, you will find yourself doing something you were not able to do as recently as last December, and you will know healing has happened.
When it happened to me, I found myself on the second floor of our home, with know idea how I got there. I went up the steps at the normal human pace. I was breathing slightly heavily, but nothing like before the transplant. And, I was not wearing any oxygen.
It was an astounding discovery.
That was in November, 2005. In December, I made Christmas cookies. To be honest, I have not made them in 15 years. I made Christmas dinner for 15 people , including the largest Buche de Noel you have ever seen. I was exhausted, but very happy. I recovered very quickly. I have not looked back.
I know it will be the same for you. The best part of this for me? I now have someone to talk with who knows exactly what I am talking about!

Jane

I Will Ask... And You Can Say Yes or No

2007-02-09T21:44:00.000-05:00

This is one of those times when I have to step out of the safe zone.

You've been reading my story, and it's safe for all of us. I tell my story... you cheer me on... and we wait for the stem cells to work (or not)... Now I have to ask for your help.
Don't run away - I ask - You answer. Whether the answer is "yes" or "no", we both know that we are being honest.

Well, I know someone who is waiting for her chance to get the same procedure as I received. (As a matter of fact, I know of 5 or 6 people who are going through various stages, as they are trying to get a doctor and the finances aligned, so that they may have the same opportunity that I have.)

The person that I speak of now is Devona. You can read about her, and make a donation toward her stem cell transplant by clicking on the link, in the right column ("Please Help My Friend Devona").
Devona is in her early 30's. She and her life partner are raising a 13 year old boy.

There is much more of her story at this site: http://whatiamlivingfor.spaces.live.com/.

At this time, she is awaiting the scheduling of treatment at Northwestern University, in Chicago. She will participate in a trial that is very similar to the one I received.
Devona's fundraising has raised about 1/10th of what will be needed to get her through the treatment and followup recovery periods. Her father has committed a substantial amount - using his personal retirement funds - to guarantee that the procedure will be paid for.
I don't know what we may accomplish that can ease their burden - but I feel that I have an opportunity to communicate to you and you may want to seize the opportunity to help her.

Now I have to lay down, before I fall down.............................

HEALING - DAY 7 - 020907

2007-02-09T19:34:00.000-05:00

I am eating. My appetite is great... On top of 3 regular meals (more detail to follow) I drink 2 Ensure Plus every day. Each of those is 360 calories.

A special group of volunteers have taken on the task of preparing meals for Robbi and I. This is one of those "Angel" acts. Not only does this ensure that we eat complete nutritious meals regularly, but just as importantly - a great burden is lifted from Robbi! Aside from taking care of our home, our lives, AND ME - at least she doesn't need to plan for... shop for... prepare... cook... serve... and clean up from 2 meals every day.

OH YA - and before any of these people are allowed to cook for me, they have to undergo a mini-training session. There are many restrictions and requirements that must be adhered to, else my health/life is endangered. Based on the fact that I keep getting up and want to eat each day, I suspect that they are doing just fine on the lesson end. It's even better than that! These people know how to COOK!!!

GAME BALLS:

Karen (cook & trainer)
Alisa
Stacey
Marsha
Cindy

I've only gained 2 pounds so far. As far as I can determine, my body's metabolism is running at peak right now to handle all that is going on. I have to eat massive amounts just to maintain... That explains why I am so exhausted by 8pm every nite.

It's bed time now.............. zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

EYEWITNESS ACCOUNT - ILENE

2007-02-09T11:05:00.000-05:00

For all you skeptics who think I was lying on a beach in Hawaii, or awaiting the opening of Spring Training in Florida (more likely), here is the first eyewitness account from Waterville, Maine.
OK, so it is written by my big sister Ilene; but anyone who knows her can vouch for this - she can't lie - even if she were reading a script in a play, and it was her character's role!!! Asking her to "tell the truth" has the same affect as truth serum. And you don't even have to ask politely.

Ilene came to see me during my last week of hospitalization, and a couple of days back at the hotel. This and excerpt from her email to friends and family, sent when she returned to Maryland:

"First, David has survived the most dangerous part of this process, and
he was checked out of the hospital yesterday weeks sooner than we¹d expected!"

"I'm back from ME. I was there for 5 days and witnessed a wonderful
turnaround for David. Last Wednesday, Robbi called to tell me that
David was having a very bad time. It turns out that he'd been taken
off one of his regular meds and, on top of everything else his body
was going through, he was experiencing some symptoms of withdrawal (particularly, agitation).
He didn't want anyone around (including nurses, doctors, and Robbi).
She warned me that I might not be able to visit with him when I
arrived on Friday. There was no doubt that I had to be there, but I
was prepared to wait at the hotel until David wanted company."

"After flight delays, I finally arrived in Waterville (about 20 minutes
north of Augusta) at 5:30 p.m. David was feeling much better by
Friday evening and wanted me to come to his room. I had to shower and change my clothes at
the hotel before going to the hospital. I couldn't touch him; so, we
exchanged virtual hugs and "air kisses". It was great to be there.
On Saturday, David welcomed our nephew, Matthew, and his wife, Devin,
and on Monday, he enjoyed a visit from my daughter, Joyce, our friend,
Jenny, and my grandsons, Jen & Kels. Proper precautions were taken,
of course cleansed hands, masks, and gowns to protect David from contact with germs.
It¹s really amazing how these visits from loved ones brought so much
positive, healing energy into the room."

I'd love to read and post other interpretations of my treatment and recovery. Come on and get them in to me while they are fresh in your mind.
Send them to: DesktopDavid@gmail.com

PHOTO GALLERY

2007-02-07T07:53:00.000-05:00

During the last days in Maine there were important events and visits that need to be noted, along with how I was feeling at those moments:

My niece came to visit and brought her sons to see me. It has been an important issue to me that children can and should be apart of all life experiences - joyful and sad alike. Jen and Kels are fortunate that all of the parenting adults, in their life share this idea. So, they were brought to see me, in the unusual and intimidating environment of my hospital room. Jen (blue sweatshirt) and Kels are highly intelligent and inquisitive interviewers. This is how they learn! And boy do they absorb information!
They asked questions about the room, my hair, the medications that were being administered by the IV tree, and the masks that they were required to wear. Note that Kels had an issue with wearing the mask. He was able to hold it on his face and maintain the safety factor. Kels also asked the best question of all: "How will we know if/when the stem cell transplant worked?" I answered him the same way that my doctors answered this to me. Both boys understood.

My sister Ilene is their "Bubbie" (Yiddish word for Grandmother).

Prior to the boys arrival, I was feeling very unsure of accepting any visitors. These days were uneasy for me as I was at Nadir and also coming through the A-Fib event. I was weak of body and mind.

It was a major motivation for me to be able to talk with the boys. Just like my nephew Max, I feel an obligation to share my experiences so that they will be apart of our family's total lives, not just "seen and unheard". Their questions are born of their observations... and it is beautiful to see and hear them process ideas, ask for clarification, and share their summarized conclusion.
Later on, I prepared to leave my "capsule" for a walk. Heather, who had been present through many phases of my recovery was there to help me with this major task.

(This was my second time walking out into the hall. There aren't any pics of the first venture.)
By the time we had arranged for this walk, I was already tired and knew I didn't have long to go before I would have to crawl back into bed. At this phase of the recovery, I spent about 98% of all day in bed. I got up to go to the bathroom, and I could get up for a few minutes to get an item or move something in the room.

This me standing outside the room, which is to the right side of the pic (my left). Behind me is a roof patio that I look out at from my bed all day. In the nice weather patients are encouraged to stroll into the fresh air. Of course today it is snow covered and about 10 degrees out there. I'm thrilled to walk up the slight incline that leads to the door - this is a major triumph!!! I am already running low on stamina, and anxious to move on... I'm trying not to go right back to bed.
Jody was at the 3-North Nurse's Station (my Mission Control). Was she smiling for Robbi, the photographer, or was she that happy to see me up and walking? I think it is the latter.

My common pose, with Ilene. I didn't realize I stood like this. I'm sure that it shows my insecure feelings. I am certainly uneasy at this time. Immediately after this is taken, I turned and made it back to the room - which is 30 feet behind me. The door that you see directly behind is that patio door.

Oh! The elevator door on the right is the one that I used for the "Star Trek" scene (visit to the xray lab).

We are standing in front of the Nurse's Station.

On Discharge Day!

Debbie (The Boss) presented me with a "Life Is Good" t-shirt, that is signed by all of the hospital staff that was involved in my treatment. (actually - she had to hold on to the shirt to get some signatures of people who weren't yet available)

The hat I'm wearing has the Hebrew word for LIFE on it.

This hat was given to me by my father-in-law (Don) when I was recovering from my heart attack, in Dec. 1997. Don died in Jan. 1999, of pancreatic cancer. (He is remembered in all of our life events - before and after his death.)

When I was being wheel-chaired out of the hospital, I asked Debbie to stop... Ya, I cried. Now, sooooooo many people keep assuming that I must have mixed emotions about leaving my cocoon. It has been the safe harbour for so long that it natural to feel unsure when leaving it... nope. Not a shred of anxiety... not one whimper of "I'll miss you"...

It's more like "BYE BYE!!!!!!" "Thanks for the memories - and now I'm going to create a new life without you!"

I can't speak for anyone else, but I don't get the thought process that is being imposed on me or others. Perhaps you may (or have) felt that way, and that's cool, because you are YOU. In my world, (greatly influenced by Robbi, Emily and Jayme) we have a view of life's events that is summarized in this phrase: "Feel it and move." Some events may cause to pause for a moment of reflection, some (like remembering loved ones gone) are reflected upon repeatedly (both planned for and randomly).

Leaving this room was a great moment of passage that I will remember always with fondness and triumph. And now we move forward.

Back in the hotel for the couple of days, Robbi poses in a rare moment on the lens side of the camera.

Yes, she is making fun of my fuzzy baldness. I have shaved off the scraggly remnants of my beard. I'm told that when hair returns, it can actually come back in a different texture and color.
Before anyone asks - NO - Robbi is not drinking a Jack Daniels on the rocks!... She is holding mine (just kidding again).

These days, Ilene is laughing a lot now - she's just happy that her baby brother is still alive. Ilene found out that phone conversations, emails, and blog messages just don't quite get the point across. When she arrived, I was heading into the hardest point of recovery. She watched me, along with Robbi, after I had hit the bottom and began to climb up slowly. She wasn't here for Nadir (a few days before she arrived).

Nothing can prepare us for seeing a loved one look like "something the dog dragged out, and the cat dragged back in again."
On the day before we left Maine, I had an appointment with Dr. Ann.

Another rare moment for Robbi, in front of the camera - NOTE: She and Ann are holding hands behind me! This is not a small moment, for they have a very strong bond between them. It is more than me. They are truly connected in how they view our world, the process of healing. I am most fortunate to have them as my primary caregiver/health care provider.
The note book holds every test result and vital sign throughout my hospital stay.
On the day that we were leaving Maine, I had to come back to the hospital to have my chest lines removed. There was very little discomfort during the procedure. The local area numbing process hurt more than anything else. I was totally awake and aware during it. It took about 15 minutes to disconnect and pull the line from my chest... amazing stuff.

Debbie had met us in the area where this was done, and when we were preparing to leave we got a call from Dr. Ann's office - "please come down to her, she wants to recheck me before I leave."

See, yesterday, my heart rate was elevated and she had been wondering why... all other vitals were perfect, especially my Oxygen absorbing levels.

Then she realized that I wasn't hydrating properly... I have to drink a minimum of 2 liters of fluid a day... and she was correct that I was low on the intake over the last day or so. Since then I am drinking 3+ liters a day (lots of trips to the boy's room).

Then, we left to begin the journey home... This is the door that Robbi entered and exited every day during my treatment.
We had to return to Hampton Inn, to finish packing the car. It is amazing that when you live some place for a month and 1/2, you accumulate a lot of STUFF!

It barely fit into the car... I won the toss of the coin and got to ride in the front seat while the leftover food stuff stayed behind. WHEW! I wasn't looking forward to staying in Maine. I hope the hotel staff likes Oreos, soups and tortilla chips.

The ride home wasn't too eventful. I was uncomfortable because of aches in my bone marrow. It seems that I was still over producing blood cells and the pressure in the bones is very achy. I had a script that helped me be a lot less cranky.... and wimpy - Robbi doesn't tolerate wimpy.

I've already described the arrival into Westborough, so the coming postings will focus on healing...

HEALING - DAY 3 - 020507

2007-02-05T07:46:00.000-05:00

There have been so many instances and sub-plots that I haven't written about... I will try to fill in as we move forward.
Healing requires that we keep looking forward.
When I remember the connection to a previous instance, I'll flashback.

Being back in Westborough is a jumble of emotions: When we drove into town on Friday, I felt like George Baily, in "It's A Wonderful Life"; I wanted to roll down the window and scream "I LOVE YOU, MACDONALDS & FRIENDLYS", "HELLO YOU CRAZY WESTBOROUGH SAVINGS", "I'LL SEE YOU SOON, CVS!"
Robbi and I laughed at these cliché rants because we truly felt the sentimentality. We are home. That said, the conflicting sense was that we are in a strange place, and we are unsure of what is to happen next. Robbi drove on auto-pilot, while the surroundings weren't really familiar.
The one thing I wanted to do (but didn't) was to "DO THE ROTARY". The Rotary is the traffic circle (aka a round-a-bout), in downtown Westborough. The high school tradition is to return from a victorious football game, and the bus drivers continue around the Rotary multiple times while beeping the horns. It's an acceptable public nuisance. My variation was to hang my butt out the window while Robbi beeps the horn... an idea that was best left in my mind... which it was.

Before I discuss my physical condition, I must once again explain the difference between Treatment and Healing/Recovery - and the definition/prospects for Success:

TREATMENT: The whole period from when we arrived in ME (122606) until we left ME (020207). During this time I was prepped for and received my stem cell transplant. My Scleroderma symptoms are affected by some of this treatment, specifically, the chemo. Cytoxan is a chemo that I've received before and is known to have some affect on symptoms. Most likely is that the skin can be softened. This is neither a cure, nor a long term relief. As a matter of fact, my previous Cytoxan experience, I had none of these benefits. The stem cell transplant is part of the Treatment. IF there are any benefits to be realized, they will be seen during the Healing period - which continues for the rest of my life.

HEALING: There are 2 phases to Healing -

1) RECOVERY - from the Treatment: The beating that my body took from the chemo is severe. The risks of various cancers are greatly increased. Although they pumped me with other chemicals to minimize these risks - my chances of developing cancer is much much MUCH greater than most of you. The fact that I would take on THIS risk, might bring home the risk of death from Scleroderma. It was a no-brainer.

2) HEALING - from the Treatment: PLEASE NOTE----- Healing DOES NOT EQUAL CURE!!!
Of the approximately 36 people that have received stem cell transplants:
>>> 5 DIED FROM SCLERODERMA PROGRESSION, WITHIN 2 YEARS OF TREATMENT. Depending on the degree of their disease, they were likely to die within that period of time, even if they didn't have the treatment - same as my prognosis.
DO YOU GET IT?
There is a 14% chance that this treatment will have ZERO affect on my life expectancy of 2 -3 years.
>>> 31 have had some stabilization or regression of symptoms. Stabilization = neither worsening nor improvement... this may be considered an extension of their lives. Stabilization is looked at as a Success. Of course regression of symptoms is the most desired result. Measuring regression is difficult. Some symptoms may fluctuate in their degree, naturally. (Some people have had skin softening WITHOUT ANY TREATMENT!) Symptoms often increase/decrease as the disease progresses. Some symptoms are masked by the medications we take.

3) SUCCESS: Defining Success is an individual, subjective measurement. For me, the measures include the impact this whole process has had on my health, family, community, and what (if any) affects may be realized by others, as a result of my experience. Each of these factor groups weighs equally in the final measure.
I DECLARE THIS PROCESS TO BE SUCCESSFUL!

===========================
Now, you'll have to keep coming back to read the details, to find out WHY, (although many of you have some idea, I'm sure).
===========================

Before I sign off:
Some GAME BALLS & Thanks

Alisa & Karen - YUMMY!!!!!!!!!!!!
Lew & Family (a call and a card)
Cindy P. (prescription filled - brownies)
Nancy & Scott - ("neither rain or snow, nor gloom of night...")
Gordon & Karen (mental health is the foundation for physical health - and you are providers of both)
Sammy (a purr is as good as a hug)
Emily Sam (your wisdom grounds me)
Jayme - (talking... keep me talking...)
Steve - (a last second call... the vac is great!)
Steve - (my office is prepped & up and running!)
Skip - (my business continues to thrive!)
Donna & Rick - (We love the Pats - because of HOW THEY WIN, not whether they win or not!)
Josef & Anne - (I WILL FILL THAT Piggy Bank!)

A FOND FAREWELL TO 3-NORTH

2007-02-04T03:24:00.000-05:00

The intensity of the whole process which requires that you give your trust to the people who treat your mind as well as your body, causes me to reflect and recount the names of these wonderful people:

GAME BALLS TO:

Debbie
Tania (Care Coordinator)

Secretaries:
Noella
Ashley
Cheryl

Nurses Aides:
Misty
Kristina
Katie

Nurses:
Heather
Brenda
Amy
Sharon
Angie
Nancy
Kristi
Jody
Heather
Monica
Sue
Gwen
Stephanie
Stacy
Laura
Ginger
Kim
Kathie
David
Stephanie
Helen

Cindy
Terrie ( helped with harvest)

Arlene,David and Martha (donated the exercise bike)

Dan (IT)
Dirk (Engineering)

I hope to see you all, in May, when I return for my next Check-up.

TRANSITION DAY - From Treatment >>> Healing

2007-02-02T05:52:00.000-05:00

Today I transitioned from "Patient in Treatment" to being the person managing my own healing. I'm now just like all of you.

I live in my own home...
I have to leave my bed to get my blood tests...
The food I eat has never been de-taste-ified...
My doctor calls me, rather than showing up next my bed at 7:30am...
Nobody is adding up my fluid In/Out ratio!!!!!!!!!

I write this posting, sitting in our family room in WESTBOROUGH!

The last 4 days have a whirlwind of emotions and events.
AS I sort it out I will continue to summarize the past, report the present and plan the future.

Sweet Dreams for all of us.

David

DAY 39 - 020107

2007-02-02T05:20:00.000-05:00

FABULOUS FEBRUARY!
And that it is! I turned the calendar to February and it flips me out that it’s a new month. In the beginning of January I was overwhelmed looking at the month ahead and I couldn’t imagine making it through each day. February seemed a year away. I marked off every day after coming back from hospital and I thought, “Wow, we made it through another day”. I learned more about life in this past 6 weeks than any other time in my life. I think I’ve aged about 12 years too but it’s all good.

We met with Dr. Ann and David’s numbers are excellent. Tomorrow morning they will remove the line in his chest and then we’ll prepare to COME HOME!!!

To everyone here in ME - Thank you from the depths of our souls.
We are so grateful and filled with love for you all. We will miss seeing your smiling faces every day. I can’t say more than that for now because I’m all facklemped with each word I type. Just know that we are friends for life!

I’ll sign off so I can begin the packing process and I’ll be in touch with you all when we get home.
.......Too teary to continue. Love you all very much.

Robbi

THIS IS BIGGER THAN ANY ONE OF US

2007-02-01T21:29:00.000-05:00

OK, I am falling behind, because things are moving faster than I can type.... (which is about 5 WPM). So, This is a great time for all of us to fill in the gap:

My story is, just that. I can only relate all the events from my perspective.

I invite all of you to color in the areas that I can't see. Tell me what you have seen, if you have involved in any way.

Nurses, friends, casual visitors to this blog. If you have any piece of the puzzle PLEASE SUBMIT IT TO ME!

DesktopDavid@gmail.com

If you choose to remain anonomous, that's cool. I will only show first names.

Let the games begin................

Thank You: Jan & Tom

2007-02-01T06:35:00.000-05:00

Jan is a dear friend that Robbi met (via a "Sclero" message board), and continues to stay in touch with.

In our journey to understand Scleroderma, Jan communicated with Robbi, on a daily basis, as her husband, was receiving stem cell treatment - 2 years ago. Tom did not survive the treatment phase. He received the early version of the SCOTS Trial (including full body irradiation). At the time he and Jan were able to find a medical team that was capable and willing to treat him, his disease was much further progressed than mine. Tom, knowing that his chances for survival were negligible, was motivated to live. He knew, too, that others would benefit from his experience in the treatment.

Today, Jan continues to provide guidance and information for many support groups from the experience of her husbands treatment. Tom was a courageous and loving husband whose memory inspires many of us to move forward with stem cell transplants & research.

I am honored by Jan's friendship, and grateful to Tom for his love of Jan, which enabled him to lead and teach many of us to follow...

David

THERE’S A MAN IN MY ROOM!!

2007-01-31T06:20:00.000-05:00

And it’s so good to have him in here!!
It’s amazing that he’s here!
It’s amazing that he’s anywhere!

Wonder of wonder…what an unbelivable day! David is wiped out emotionally as well as physically. It’s a great wiped out.

Last nite, he talked with Heather, (awesome nurse) for 3 hours going over everything that happened over the past month and he cried...

Today, he got dressed in regular clothes and he cried... he packed up his computer and cried... he stood outside his hospital door looking in at an empty room and he cried.

Debbie (The Boss) touched his heart with a gift of a "Life Is Good" t-shirt with a guy and his kayak on the front and on the back the whole team from the hospital signed the shirt... and of course he sobbed, (we all did at this point).

Tomorrow we lay low and rest. Thursday they will check all his blood work and numbers and if everything comes back good then on Friday he’ll get his chest line out and we’ll head home on Monday!!!!! Yes, THIS MONDAY 2/5! 3 WEEKS EARLIER THAN EXPECTED!! I told everyone at the hospital that I feel like I’m going to wake up in my bed at home and see all my family and friends around me and I’m going to say, “and you were there, and you, and you!” It feels just like that. UNREAL!

For the next 3-4 months we have to be very careful. Anyone that comes to our home has to be sprayed with Lysol prior to coming down our street then as you enter our home you will need to shower and sanitize your body then put on a mask, goggles & gloves, walk into the plastic bubble and roll into our house. We have pages of instructions to follow and lots of new rules to learn.
There will be a bill board on RT 9 for your convenience.

Exercise and fresh air is a must so you may see us walking the streets very soon.

I sign off tonight with full heart.

~ Robbi

In loving memory of Beautiful Rose ~

2007-01-29T21:49:00.000-05:00

Sometimes you have bonds with people that you’ve known for years, and sometimes someone “pops” into your life and you immediately connect to their soul. I was blessed to meet an angel a couple of weeks ago. We made each other smile during some pretty rough days. We touched each other in a way that I can’t express in words but I felt her touch my heart. How lucky her family & friends are to have known this angel. Learn from her beauty because it’s there right now.

Thank you Rose for touching my life. You made my ride a little less bumpy, I hope I did the same for you.

Love always,
Robbi

DAY 36 - 012907 - RIDING RODEO ON A PINBALL!

2007-01-29T18:06:00.000-05:00

YYYYYYYYYYYYYYYYYYEEEEEEEEEEEEEEEEEEEEEEEEOOOOOOOOOOOOOOOOO!

I am being discharged from MGH, Tuesday, January 30, 2007

I know ya'll have no idea how I got from There - to - Here... It's all moving so fast and so well.

Please trust me that I have to sort it all out into a sensible narrative.

NO CALLS PLEASE - ROBBI AND I HAVE MUCH TOOO MUCH TO DO THE NEXT 24 HOURS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

DAY 35 - 012807

2007-01-29T04:18:00.000-05:00

Robbi's Update:

Today is David’s, (& Emily’s) ½ birthday. We’re a strange family, we celebrate ½ birthdays. This ½ birthday is the most important one David has ever had. 6 months from now he should have a beautiful new strong immune system and taking a walk in the warm July air. Life is amazing.

When you’re normal immune system is humming our numbers are around 4,500. David hit Nadir on Tuesday which was 0 and today 5 days later his number is up to 1,900. This is wonderful! In fact so wonderful we’ve been given the heads up that David may be released to come back to our hotel room on Tuesday and be out-patient status for the next 2 weeks. I am cautiously very excited. This is at least a week earlier than we expected. Dr. Ann is very satisfied with David’s progress. We could be looking at the final weeks of our stay here. I prepared myself the best I could for “what if’s” but it didn’t occur to me that we could be ahead of schedule and I didn’t dare to dream of successfully being at the end of the process so soon. I’m very facklemped!

Life is amazing!

~ Robbi

DAY 33 - Flashback - 012607

2007-01-28T05:45:00.000-05:00

Yes this was the day of "Earthrising".

It was also the day my big sister, Ilene, came to see me. For all the phone calls, and blog updates, you see that the message of our journey doesn't quite translate into words the way it does face-to-face.
The difference between what they expect to see and what I actually look and act like - is different.

Ilene's jaw didn't drop open. But, the it makes an impact when at the hotel - she had to shower and change clothes, to shed all that may be picked up along her travels. Then she arrives at the hospital and has to put on a gown and gloves.

She stepped into the air-lock space, and learned the pre-wash and timing procedures and then entered the room.

I could see her heart ache to hold her baby brother... (I'm still that cute).

So much to talk about.... Me, Robbi and Me, The Kids and Me, and then what Ilene thinks of ME...

Oh, and we have confirmation that there is an airport in August, ME

DAY 32 - Flashback - 012507

2007-01-28T05:23:00.000-05:00

Thursday - I WAS A VERY BAD BOY...

All I'm allowed to say in this public forum is:

"To best of my recollection, Senator..."
"I love you Robbi."
"I wouldn't be here today without my nurses, techs, and doctors."
"I LOVE YOU ROBBI."

===========================================

What can be say about the events of this day are:

a) The cause of the A-Fib was determined by Dr. Ann
b) The cure involved adding and removing medications from my routine.
c) The fix took a period of time - during which my behavior was NOT NICE! d) The A-Fib was u

Rather than apologies and special thank yous - I award a round of GAME BALLS: Tania, Heather, Ginger, Dr Kong, Debbi, Dr Ron, all the patients on 3-North
.....AND MA BARABAN!!!!!!!

DAY 31 - Flashback - 012407

2007-01-27T19:25:00.000-05:00

This was the day I received 3 bags of transfusions:

Platelets are yucky yellow looking. But of course platelets are vital to life. This bag was about 1/2 liter. It was put up on the IV Tree and turned on to flow fast! I think it was inside of me within 15 minutes.

Then came the Red Blood Cells - 2 unit (bags).
A SPECIAL GAME BALL GOES OUT TO MY DONOR (anonymous)!

These are dripped in more slowly. The blood cells are warmed as they pass through the pump. I get a little Benydryll to protect from allergic reactions. It makes me sleepy.

Now the A-Fib has continued and the doctors are ordering EKGs 3 times a day. I'm getting lots of attention... OH YAH, I'M HANDLING IT FINE.

There is a parade of doctors, techs, and test machines, through Room 357.

The way that I feel the affects of the A-Fib are:

a) My blood pressure is very low. Often it is (Low)80's/(low 60's)
b) My heartbeats are very irregular, and I can't really catch my breath.
c) I constantly feel like I'm nodding out -

This is why I hadn't posted regularly!!!

The day ends with everyone thinking we may have a clue - but the A-Fib persists....

Even Ambien doesn't quiet the mind..............

DAY 30 - Flashback - 012307

2007-01-26T07:08:00.000-05:00

Tuesday was a day of great anticipation. While my new stem cells are flowing around (they are a week away from Grafting), we are watching the daily blood reports to watch the demise of my original Immune System.

52 Years of colds, mumps, cuts, broken arms and Scleroderma, have worn it down in ways that science can't yet understand - so we are trashing it!

I awoke feeling great on Tuesday. I had energy, motivation - I was ready to kick some ass!

That morning, an exercise bike was brought into the room... It was donated by a friend of Debbie (The Boss). It was sterilized and ready to use immediately! I Sat on it and set all tension rating to "1"... I proceeded to pedal 0.1 miles! The is the exact distant for my garage - to our mailboxes, at the end of the road. I was alone and doing the Snoopy Dance!

Now fast forward, oh, 5 minutes and it was time for vitals... A new development!

Atrial Fibrillation, or "A-Fib", as we on the inside refer to it.

Quick Def:
Atrial fibrillation is a disorder found in about 2.2 million Americans. During atrial fibrillation, the heart's two small upper chambers (the atria) quiver instead of beating effectively. Blood isn't pumped completely out of them, so it may pool and clot. If a piece of a blood clot in the atria leaves the heart and becomes lodged in an artery in the brain, a stroke results. About 15 percent of strokes occur in people with atrial fibrillation.

{Now you know why we weren't so quick to post play-by-play, throughout the diagnosis, head scratching and treatment phases.}

DAY 33 - 012607 - Life Rising

2007-01-26T06:06:00.000-05:00

On Dec. 24th 1968, Apollo 8 was the first manned flight to pass behind the Moon - loss communications with Mission Control - and emerge safely on the other side. This photo was called "Earthrising" and was the first time humans had witnessed the beauty!

I remember watching TV with my family, and we held our breathes, listening to radio static (and Walter Cronkite) until Frank Borman broke radio silence with "In The Beginnining..." - Genesis.

I do not assume to compare my experience to the grandeau of these events!

My comparison is relatative to the personal experience of what Robbi and I just went through.

Generally, we have shared so much of our daily happenings. We laugh and joke and mostly it is easy to do so; even though, the doctors aren't smiling and the nurses are consulting with the doctors before even routine tasks can be completed.

We just passed behind the unknown.

Our entire medical team was challanged as they had not yet been...

My next postings will provide the detail -

My Medical Team, Robbi and I are better now.

It's Taking Long Than I Expected...

2007-01-25T18:49:00.000-05:00

....before I will be able to get all that has happened in the last 3 days reported. Tonite I have to take Adavan to relax enogh to get a good nite sleep.... Sweet Dreams Everyone......zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

I'M BACK... A LOT HAS HAPPENED...

2007-01-25T08:13:00.000-05:00

I've had some medical 'glitches' that we have been working through.

Bare with me as I get these posts sorted out and published for you.....

DAY 31 - 012407

2007-01-24T20:19:00.000-05:00

Robbi's Update:

Today around 3am David hit Nadir. That means his prior immune system is gone. By the time Dr. Ann came in this morning his count was on its way back up. By the end of the weekend we’re expecting to see signs of new life.

David spent the day checked out. He even took off his blue tooth and his computer was off to the side! While sleeping like a baby they gave him a tune up by giving him a blood and plasma transfusion. All of David’s numbers were very low today so they wanted to kick him up a few notches. Other than that he feels great.

Miss my kitty ~ Miss my bed ~ and believe it or not I MISS my STOVE and OVEN!!! I can’t wait to have a stove & oven again!!

~ Robbi

DAY 30 - 012307

2007-01-23T22:26:00.000-05:00

Robbi's Update:

How very sweet you all get nervous when you don’t hear from me. We’re fine. In fact David is defying science so far! He feels much better than he is supposed to. A few little kinks but nothing serious. (David will give details tomorrow.)

I had brought books to read to him, music for his listening, and air fresheners. I had thought that by now he’d be laying there staring at the ceiling and I’d be wiping dribble off his chin. Nope, he’s on the phone, EATING, and sitting up. He still hasn’t hit Nadir yet but they expect he will tomorrow. I stand at the door and make sure no dust gets into the room. If someone sneezes a mile away I sterilize everything near his door and around the perimeter of the hospital.

If you read his blog last night then you know yesterday was a very stressful day; organizing his way out of his room to have an x-ray. David was very nervous. Understandably. A germ could KILL him. But Debbie once again was right by our side and made sure everything happened without incident. I feel like I’m in the Wizard of Oz and when I wake up I'll have all these wonderful characters to tell you about.

It’s a full month today, that we have been here. I haven’t taken off my Ugg clogs, jeans and sweatshirt since December 26, 2006. YES, I’ve washed them but couldn’t put them back on fast enough when they came out of the dryer. I think I’ll stay dressed this way for the rest of my life.

Shawl #1 went to David and he uses it all the time.
Today I gave my 2nd healing shawl to a woman that was just harvested. She is getting the first stem cell transplant for cancer at MGH.

I’ve been dying to say hello to the patient that is across from us but where we are you don’t breathe and you don’t touch anything. But today her door was open and I poked my head in to say hello and tomorrow healing shawl #3 will go to her. Her room is not under the same care restrictions as our's.
She’s a doll and her name is Rose.

I can’t believe I’ve been gone a month. It feels like I’m in a long dream. I had to talk business last night and I felt like I was going to have a heart attack. Thank you, June, for being there and allowing me to focus on things here!

I sign off tonight wishing one of my dearest, most precious friends a VERY HAPPY BIRTHDAY!! Today she is 27. Well she looks and acts like it. Huge hug!! XOX

~ Robbi

WAS I THE ONLY ONE TO MISS THIS NEWS????

2007-01-22T23:49:00.000-05:00

Was I in a comma or something????????????????

Spring Training camp to open on Feb. 18

The Boston Red Sox begin their 15th year of spring training camp in Fort Myers, Florida, one month from today on Sunday, February 18 with the first workout for pitchers and catchers at the club's Player Development Complex.

========================

Baseball, in the words of A. Bartlett Giamatti, lover of the game, fan of the game, Commissioner of Major League Baseball (1989):

"It breaks your heart. It is designed to break your heart. The game begins in the spring, when everything else begins again, and it blossoms in the summer, filling the afternoons and evenings, and then as soon as the chill rains come, it stops and leaves you to face the fall alone."

"There are a lot of people who know me who can't understand for the life of them why I would got to work on something as unserious as baseball. If they only knew."

"There's nothing bad that accrues from baseball."

Thanks Bart. Thanks Jayme.

Not as Geeky but more fun than StarTrek

2007-01-22T18:12:00.000-05:00

So, we get the call to prepare to suit up at about 4pm...

Terri brings in the wheel chair and blankets, gloves and masks (I get to choose, because it's hard to breathe for more than 1 minute in any of type - or so we thought)... The chair is covered in 2 blankets... I plop in... and Robbi and her begin to wrap me up after I put on the mask and gloves... Debbie (The Boss) is the self-assigned driver.

Here is the Star Trek reference: The episode that was about a criminal trial of the "original" Enterprise Captain (pre-Kirk), and he was in a special chair that encased his body. I resembled a low-budget version of that - sort of high school video class.

We enter the hallway - my first time outside this room since Sunday, January 19th.
They put me in an elevator that is 10' from my room - very cool. Robbi is wheeling the IV Tree, which is not easy when you move it around for yourself - and she is coordinating my tubes with Debbie's driving! KUDOS to both of them!!!!

Onto the 1st floor... I am an intimidating vision... and ain't cause I might be mistaken for a 6'7' 305lb Defensive End... it more the way people fear the Theme from "JAWS" - you can't see it, and you don't want to... Not because your scared of this tacky movie, but because your annoyed! And that is why people look at me and stand-off... Our plan worked: If you can't forcibly clear the way - you make it look as appalling as possible - Debbie is a MASTER!

Debbie find the Xray Room and the Tech - Casey, a college intern... and you think the plot thickens? Not really... Except that Casey didn't know the exact key-strokes to pull up the online order for my process, He was Awesome! He made it fast. When he had to reposition me for the "shoot" I told him to imagine that I was infected with the Plague, he responded accordingly and will make a Class A Medical Professional.

Last notes:

a) The mask I wore is a type that has allowed me to breathe for extended periods - I wore it for an hour!
b) When we exited the elevator, on 3-North, I was out the door first, so I leaned forward to see and report "All Clear".
c) The cool air on the first floor was VERY VERY NICE to feel.

Everything adds to the prospective when you wake feeling safe and kinda cool... about 10am you hear that you have to go into a world that could kill you as easily as it won't... then you spend 3 hours planning to maximize (but never guaranteed) success... and then you execute with the best team you could be apart of... then you take a sponge bath by yourself in your cocoon, watch "Deal or No Deal" & "Heros" and write stories into cyber space... Does it get better than this?

I think not.

I love you Robbi, Jayme and Emily (and Sam and Gus too).
Sorry, no pics.

DAY 27 - 012207a - Patient Updates

2007-01-22T16:25:00.000-05:00

More on the Neutropenia Details...

It looks as though I will get a transfusion of red blood cells, Tuesday. This is to boost my current hemoglobin count of Less Than 26% (You (normal? ha ha) all are usually between 42-52%).

Wednesday or Thursday, I will likely get a transfusion of platelets. All of you are expected to have 150K-400K of these little suckers (per some volume, or other).
My count Monday is 36K and likely to fall. Again, this is an expected development.

Don't worry though, (oh, your not...) my transfusion is added via my surgical appendix - The IV Tree - and I will just keep typing away while they check my vitals for 2 hrs. (Now, you're worried.)

DAY 27 - 012207 - Patient Updates

2007-01-22T13:25:00.000-05:00

Approaching NADIR, but not quite there. I'm feeling way too good for someone who can't be in the same room with fresh fruits or vegetables. (Organic & Fresh are breeding ground for scourge and death... just ask California farmers).

I am Neutropenic. Do I need to re-quiz everyone? (Hint: unable to defend against infection.)

Dr. Ann admonished me for not exercising my lungs enough - It's like she thinks I can suddenly breath easier? No, it's a process that helps keep fluid from increasing in my lungs and inspires me to maintain/improve lung performance.
Jane (My Mentor) still uses hers to exercise her lungs. Yesterday, she told me that she sang solo for her church choir and is looking at possible opportunities to return to teaching choral.

Just found out that I am to get a chest xray today.
This requires that I be moved from my cocoon, on 3-North into the general population... down the elevator... and up to the hospital entrance way where the Imaging Dept is located.
I'm told I will have a mask and gloves, and No Waiting Status in the xray room.... I think that is good for basic precautions... Not feeling basic right now.

I paged (The Boss) to make sure that I have PRIORITY 1 CLEARANCE, so that a casual walking typhoid carrier isn't walking and coughing into the hospital just as I get to the doors - that would suck.
I don't want a visitor in the maternity waiting area (right in front of the elevators) to be holding their child with a pre-diagnosed case of the Flu.

NOW FOR THE ANSWERS TO MY CONCERNS:
(In the interest of full disclosure, I want to see/show what may/may not seem reasonable in this affected mental state of mind - diseased, SCT, and assorted pre-existing psychotic conditions.)

1) Debbie (The Boss) is going to drive the wheel chair.
2) Robbi (armed with Robbi's eyes, and 2 armed neutron bombs), will ride shotgun.
3) We will only enter an empty elevator.
4) The xray dept will call ahead and move me in/out without delay.
5) Optional - Robbi wants to wrap me in Saran Wrap... we are privately discussing this now.

Stay tuned... Film @ 6...

DAY 27 - Please READ: GAME BALL posting

2007-01-22T12:04:00.000-05:00

It is too important to be missed.
I had posted it, out of sequence.

Hey, I still learning here............

DAY 26 - 012107

2007-01-21T17:21:00.000-05:00

Robbi's Update:

Intense weekend of staring at David. Like waiting for water to boil. He’s heading back down from the chemo from last week. This is expected and necessary. This is what we learned NADIR was. He will hit his lowest point as he did 3 weeks ago and Wednesday or Thursday he will begin coming back up. This means that the chemo is continuing to kill off his immune system and his new stem cells will slowly begin to build a new one. Tonight I’ve noticed him slowing down and becoming a little cranky. Cranky, can you imagine! Geez!
{Editor's Note - HEY, SHE SAID SHE WOULDN'T DO SOMETHING FOR ME WHEN I ASKED REALLY NICE.}

Emily had an interesting 3 days up here with us. She realized ME is not a place she’ll be considering moving to too soon. Way too woodsy and way too cold for her liking. We had some “girls time” while going back and forth to the hospital. We went to see "Dream Girls" yesterday. It was nice to get lost in a movie for a couple of hours together. Then when we got back to the hotel and rented "The Devil Wears Pravda". Last night at Applebee’s which was packed, Em overheard someone saying, “I figured it was too cold for anyone to go out tonight”. This person’s friend replied, “People are like moose, they just keep moving in the cold”.
You know you’re not in Westborough when you hear a reference to moose.

I left David yelling at the TV and waiting patiently for the Pats game. He and Jay will be on the phone together watching the game and they’ll yell at the TV together. They can hardly wait.

FYI, some of you may not be aware that David has a blog. Please feel free to log on to - http://desktopdavid.blogspot.com/. David gets much more detailed than I do about the procedure but some of you might find it interesting. If nothing else you may find it entertaining. He has about 100+ people tuning in everyday to see what’s going on.

All the nurses click on each day and get a kick out of what David writes. They’ve shared with us that it’s so cool to understand the patients side of the story. It’s also nice because his blog is starting to help people out there who are considering doing this. If his writings help someone in any way then he’ll feel like he’s made a difference.

Signing off with a cheer for the PATS!

Love ~ Robbi

Who was David (Before Robbi)?

2007-01-21T14:55:00.000-05:00

Sitting and watching the Saints vs. Bears Game: Robbi makes side comment -

"It's hard to imagine that you did anything before me."

without hesitation, I respond,

"I didn't. I was just an amoeba, in a petrie dish waiting for you to make the difference."

I know how to make her smile - just like she does for me.

Personal Medical Manager GAME BALLS

2007-01-21T14:31:00.000-05:00

Say What You Mean,
Mean What You Say,
Don't Say It Mean.

When you apply this premise to personal health care, you become a Personal Health Care Member (at this moment I proclaim the rights to this term!). Many of you have heard me use this term for years, now.
When Robbi and I began the quest to gain understanding of Scleroderma and the health industry, we already had personal traits that led us to question, probe, and assert our influence on the outcomes we desired.
This Roll Call is intended to make sure that many names (whether previously mentioned or not) get a moment in the blog for a GAME BALL.
Some mentioned in this Roll Call are self-managed professionals who set standards for this level of performance, and others may have learned the critical team values from this first time experience - and seemed to "get it" the first time.

GAME BALLS are forever - but your participation on a Personal Medical Team is to be earned by every action you think about and take, on behalf of a Personal Medical Manager. (The members of my Personal Medical Management Team {this is mine too} know who they are, and may or may not be on this list today...

GAME BALLS:

BLOOD BANK/LAB - @ MGH - Sharon, Barbara, Judy and Laura - They owned my cells right up to when they delivered them into my body! They Researched, developed and implemented the whole procedure (from scratch) for MGH. IT WORKS!!!!!!!!!!!

RED CROSS (Philly) - Betsey - Not only did she step up (when UMASS Admin declined to participate), but has since setup a long term arrangement that will benefit future SCT at MGH.

Cert. NA's - Kristina, Nilda, Misty - for the new bed, and answering my Service Bell!

Nurses - Laura, Kim, Kristi, Monica, Helen, Jody, Sue

The Ultimate apheresis Operators:
CINDY! (waves at me daily), Amy, Tania, Heather

Terrie - our clinical educator - You and your staff get 4.0 from me! (I'm sure you grade on a tougher scale)

NURSES, NUTRITION, HOUSEKEEPING, BLOOD TECHS - from all over MGH - Those of you who have worked more hours in other areas, so my assigned team can remained focused on this new and intensely intrigue process.
Some of you stepped aside because you may have been exposed to someone with a cold - so co-workers from other areas had to be called upon and quickly & indoctrinated (by Me as well!).

MGH Nutritionist - Dan - (I love my cookies) - my weight is stable

Attending Physicians - Dr. Marrache {Van Halen CD (though, not on my list of best guitar solos)}, Dr. Benzinger

HAMPTON INN STAFF - Dave Doucette (Mgr) - still caring for Robbi with 5-STAR Quality

Patti & Sterling - installed my lines (they are working PERFECTLY!)

MGH Admin - Troy, Barbara, Sherri, Marti, Dirk (I love my room), Pastor Joyce

JCAHO Joint Commission - Hospital Accreditation group that standardizes life affirming programing, such as the the trial that we are conducting here.

MGH IT Dept - Dan - "My Brother" - Thank you, for being able to speak to the world.

Housekeeping - Mary, (who clean every day like it's a "discharge" and are not intimidated by constant page-calls.

Lab Techs - you all had to learn what NOT to do around me (MGH's new quality levels) and still sucked my blood without missing a drop.

Patrick - UPS Manager (who let Debbie in the door after closing - to get my stem cells on the flight to Philadelphia for processing). Talk about being a Play-Maker. The clock was running on the limited hours that they could remain viable!!!!!!!!!! (else everything for tha last week was wasted - including the money).

UMASS - Ann Marie (an angel)

MY Sclero Bros & Sisters - Marilyn, Jane, Devona, Amy, Domenic, Richard, Paul

Dr. Ann - My Mad Scientist
Dr. Hertler - you are cool
Debbie (The Boss)

John Mac - my best friend, of 37 years - who will never read this because he has recently become nearly totally blind. The diseases that attacked his eyes will someday be overcome by SCT technology.

All of our Sclero CareGivers, Fundraisers and Donors!!!!!

DAY 25 - 012007a - Patient Updates

2007-01-20T12:21:00.000-05:00

Sorry for the delays (it's actually Sunday now).... I was not not comfortable enough to work on the blog. I wasn't sick. Didn't sleep well until I took the Ambien (I'm nominated as poster child).
{I have to remember to relate my dream/story at a later time - It is either movie script quality... or not}

There are a lot of questions about what I'm feeling physically, today, and what is expected over the next few days:

012007 -
I am running a low fever today. My norm is 97.4, today I've been running 99.4 - 100.4. Not to worry. It explains why I was feeling more introspective and focused on discomforts. Of course, from that I wrote out the battlefield replenishment plans - (my Dad smiles when I draw on military references).

Questions for Dr. Ann, during rounds:

- - - - - - What is expected next?

My body is going through 2 distinct processes at the same time.

a) The chemo of the last week is systematically removing my existing immune system.

b) My body is being prepared by Dr. Ann, with prophylactic therapy and tonite, I will receive a shot of Neulasta. This is the stuff that stimulates rapid growth of white blood cells. This process will slowly escalate over the next 8-10 days. These are the new white cells that begin the new immune system. I will be a regime of antibodies now. This is to minimize my exposure to mild infections.

c) Other participants with this protocol have received platelet transfusions. It is possible for that I will but the indications have not presented yet. Not a big deal from what I hear...

That's it for yesterday.... except that I was all set to watch "All The kings Men" & "Munich", but realized that this laptop does not have a DVD decoder package in it. That the drawback of using borrowed equipment. As It turned out, I wasn't in much of a mood for a movie... I still had to finish my assignments for today's games: I'll not disclose my bed, table and IV coverage plans; but I think the post game commentary will include allot of "David was dead-on, on that idea....", and "Does that David ever SHUT-UP?!?!" (answer - no).

DAY 25 - 012007a

2007-01-20T07:34:00.000-05:00

Today is a day of replenishment.
I'm feeling reasonably well this morning, physically. The only aches are from not finding a comfortable sleeping position. - I miss my bed at the hotel. THAT is a cool sleeping machine! -

Mentally - I'm ready to reinforce, supplement, and nourish the troops.
I've been focusing on the stem cells and they are circulating and finding their positions just as Dr. Ann game-planned. Communications with them are clear and bi-directional.
My exterior surfaces are evolving and preparing for their next assignments. Hair continues to shed, as my body once again approaches NADAR (base line neutropenic). This time It looks as though my beard, body and pubic hairs may fall out, also.

I am planning to take a luxurious face-cloth bath this morning. It takes me about 1 hour (mostly sitting on a towel covered chair) with 4 face-clothes, 3 towels and Howard Stern playing in the background.... aaaaaaaaaaaaahhhhhhhhhhhhhhhh - does life get better than this?!?

Time to pamper myself....

DAY 24 - 011907

2007-01-19T21:20:00.000-05:00

IT'S A BOY!!!
A Bouncy, fuzzy headed, (still bearded) 52 year old boy!

David’s stem cell transplant was a success! Dr. Ann came in starting the day off saying “Happy Birthday” to David. Every January 19th will be David’s 2nd birthday from now on. This is considered Day 0 of his new immune system. Tomorrow is Day 1. Em and I witnessed the entire procedure snapping photos and writing notes. Absolutely fascinating. It reminded me of a human oil change. David slept through the whole thing. He looked a little like a drunken guy passed out during the whole thing. Oh yes I’ve seen him like that. Many years ago. The nurses kept him warm with warmed blankets and sips of water every now and then. 7 bags of brand new stem cells. 7 bags of a possible new life. Amazing.

Now we sit, pray and wait. Each day they will check David’s blood count to see how he’s doing and if the new immune system is building properly. This next week is very critical.

Meanwhile, David’s spirits are good. Dr. Ann says "his body likes what they did to it". That makes me smile.

Tired and smiling…

Love,
~ Robbi

[Patient Update:

I was pretty wiped out for the procedure. They pumped me with Benedryl and Adavan - good stuff if you don't want to know what going on.

Before everthing got set up, I was anxious that way I am when the poker guys are coming over... Do I have everything ready? Food, ice, is the cat put downstairs (Bob has allergies), have I picked out the good food stuff that everyone will enjoy? Just like this Transplant, the pros will take care of themselves and the game will be perfect - but the anticipation and welcoming is the the exciting part.

The only battle I'm fighting now is the the fluid I/O ratio. I keep losing ground and they give me that damn IV of Lasix.
Listen to the putz ---- (If this is the worst thing that I come away with, then I would be willing to drink shots of it everyday) but, if I can be endulge in a simple whine - I dispise the cramps and constant peeing without relief.

I stink - or so I'm told. A fallout from the Transplant is that my body reecks of garlic. It has something to do with the mixtures that the stems are are conditioned with. Robbi and Emily didn't notice it until they left tonite, and won't hug me.... their misfuture... I'm pretty lovable and cuddlie right now.

Looking ahead:
Saturday and is going to be quiet. Emy and Robbi are going to take some "girl-time". I'm going to chill and maybe rent a movie. I'm told that I should be feeling as good as at any time through the process. I know I'll be talking to family and friends on the phone. I've set up a few such times.

Sunday is a magical day in the making...

A) Bill Richardson, Governor of New Mexico, will announce his candicacy for the Democratic Presidential omination - on the ABC News program with George Stephanopoulos (or as Jayme referrs to him - Snuffalugglus.... (no offence intended).
This is cool for us because Jayme has personal ties to the Governor's staff.

B) There is a pre-game game at 3pm with 2 teams that hope for the chance to finish 2nd in the Super Bowl.

C) The Patriots @ 6:30pm.

By the time that game ends I'm expected to be going down to NADAR - the lowest point of immune protection that I will ever reach (intententionally).

It's now 11:45pm - and Robbi is yelling in my mind - GET SOME SLEEP!

Good nite all...........

I Always Wanted To Be An Astronaut - 011907

2007-01-18T22:18:00.000-05:00

I grew up in the romantic days of Alan Shepard, John Glenn, Mercury, Geminni, and Apollo. 100 6 and 7 year olds crammed into a classroom to watch a fuzzy & shifting image of a rocket lifting off. Today, I feel as though I get to walk out of the building and wave, as I hand myself off to the capable and deserving hands of my mission control.

I'm alone now, at 4am and I slept OK. My final meal is a cough drop - the best one I've ever had... next up, AM meds (steriods)...

5:15am - Anxious, spitting up phlem, take my cough meds to control this... ordered my ritual iced coffee for...

6am I get reconnected to saline lines and they check my blood counts. BTW my sugar counts were down a little last nite - insulin is on hold.

6:45am - blood draws.... sugar is down...

I must sign off - all I'm doing is listing facts.... I'm boring myself!

I'll see ya all on the other side - at splash down.

THE EQUIPMENTS IS ARRIVING!!!!!!!!!!

THE HORSE IS IN THE BARN - 4PM - 011807

2007-01-18T16:21:00.000-05:00

Terri just came to tell me that the Stem Cells have been received by MaineGeneral Blood Lab and have been observed to be in perfect condition. The container has been secured and is will be delivered to my room at 7am tomorrow.

I'm not sure sure just how or when my postings will follow. There will likely be some delays...

Thank you all. There are so many of you that will undoubtably remain un-named in these postings - but I expect that you will be acknowledged in ways that honor your gifts to me, my family and your own loved ones.

Love, David

Emily is Here!

2007-01-18T15:57:00.000-05:00

Right now at 4pm she is with Robbi. I will hold her in an hour or so. She is going to to be my photo journalist. She will document the nest couple of days - to include the Transplant.

First, she needs to get to me, and I am ready.

DAY 23 - 011807

2007-01-18T05:55:00.000-05:00

GOOOOOOD MORNING! I've been up since 4am, It's 6am now. I had an Ambien at midnite, so I'm a little groggy but otherwise OK. My mental focus is clearing and I'm feeling that I am once again in the driver's seat.... not that anyone should allow me to drive anything other than an IV tree.

I've been able to by-pass the Lasix for 2 consecutive check-points. As long as my overall pee-output is greater than my fluid-input I win a reprieve. The discomfort and constant hassle of the ritual of peeing every 5-10 minutes makes you think of "stuffing the ballot box" with tap water and spit. {NOTE TO DR. ANN: I wasn't that smart when it mattered.} Now I'm feeling like I really have beaten the system with my own good internal plumbing system.

We often accept changes to our bodies, such as the greying of hair, the slowing of our processing abilities, and how fast we move - compared to how fast we want to. For me it's my fingers. Now, I've met people whose fingers are curled fully into the palms of their hands. I'm no where near that degree of restriction. Neither am I complaining. For me, the limitations are gradual and interesting:
My poker buddies remember when I had trouble shuffling cards. One of them, Bob, found a auto card shuffler and I used that for many months. Once that became even a slight challenge (and they stopped forgiving that I would occasionally leave a card in the machine and we would play a round of games with 51 cards) they started to pre-shuffle my deal. [Hey - whats a couple of undetected misdeals, among friends.]
My fingers have curled in slightly more on the right hand, than my left. Because of that I think that my ability to hold and throw a softball is going to be permanently impaired (unless I get hand surgery which is not in my plans). Therefore - I announce to mt teammates that my rehab assignment this spring will be to teach myself to throw and catch left handed.
OK - so this isn't exactly like learning to paint masterpieces with my toes, or even to learn how to live without eye-sight like my best friend John is currently doing. It's just me taking baby steps, to keep loving to live.

2 minor set backs:

a) My blood sugar is up to 289. This is not unexpected, as the steroids I'm taking affect the pancreas [and don't do a thing for my my home run production!!!]. That, in turn limits insulin and - WALAH! - I get an insulin shot later today. Increases in blood sugar, increases risk of infection. This I learned from, my son, Jayme who has Type-1 Diabetes.

b) My fluid intake exceeded my output by more than 1100ml which meant that they had to give me the dreaded Lasix. From 2pm-4pm I'm peeing every 5 minutes and crampy.

AS I WRITE THIS: Amy, my nurse, just disconnected the lines for my fluids!!! The chest lines remain in place for the Transplant - Tomorrow at 8am!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This posting is done... stay tuned... film @ 11.........

Thank you "tropicalkaren" (a 6 yr cancer survivor, who commented on last lites post) - You gave me something to help shape my new perspective.

DAY 22 - 011707b

2007-01-17T20:57:00.000-05:00

Robbi's Update:

Last Chemo! Tomorrow will be final preparations for receiving stem cells on Friday morning. David began the day ordering a stationary bike for the room. By the end of the day things quieted down considerably. His body is demanding he take off the blue tooth and lay down already. The next few days into early next week are expected to be rough. We have plenty of chocolate, the Pats on Sunday, and Emily will be with us to warm our hearts.

Meanwhile with the storm coming on Friday and Sat I’ve decided to rent a 4 wheeler. My car is acting very snobby up here. She wants to know why she isn’t in her garage and isn’t happy about the icy conditions. When I went to start it this morning at -4 degrees I swear I heard, “Are you joking?” Note to self; Stem cell transplants should be done someplace “resorty” and warm.

We’re ½ way through! I miss you all.

Love,
~ Robbi

[Patient Update:

I started the day feeling like, "What's the big deal? I lay around in bed, call clients, listen to Howard Stern on my laptop, and email & blog all day... What am I doing that is so special?"

Yah, I know I have an incurable condition that, if unchecked, is likely to kill me in a year or 2 - and I live in a place where family, friends and strangers have contributed MASSIVE resources of love, support, and money to give me the best opportunity to change that script... So, what makes me so special?

When I began this rant, I felt that I might be on the cusp of the answer to that question - but I'm not. I've been playing this around in my head since the nite that Robbi, Jayme, Emily and I decided to ask for help. The answer is not clear yet... I know it's there. I can feel it. We all have an answer. I'm just a little slow on the uptake.
======================================

I was feeling pretty peppy this morning. I began doing laps in my room. Picture me schlepping in pajamas, rubber souled socks, my Healing shawl and a head warmer cap, around a 12x15 room. I get a clear path of about 10' one way - turn and walk back. That's 1 lap. Oh ya, while I'm doing this I have to wheel my IV tree in front of me. All I could think of is my bro-in-law Steve telling me "no pain, no gain". But in this case the only pain was the PAIN IN THE ASS IV TREE! So I called Debbie "The Boss". I asked her to get me an exercise bike. Just a small portable unit, that could be put into a corner of the room. My plan is to have an activity by which I can benchmark my energy level. Currently my major activity is to get up to pee 50 times a day (I hate Lasix!). I think I could peddle alittle while I wait to piddle alot. Debbie is looking into it for next week when I begin my recovery phase.

Tonite, was a mildly bumpy ride, anxiety, quickened respiration rate, and fatigue. Then as the nite went on, I got better and now it's midnite and I'm finishing up another day.

Tomorrow my Emily is coming to stay with us for the weekend. (I'm Snoopy Dancing... and Robbi is flying like Woodstock).

Good nite to all......... zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

DAY 22 - 011707a

2007-01-17T13:42:00.000-05:00

I've decided that there is so much info piling up and ideas from the readers that I am going to try to multi-post.... I might try to focus on 1 or 2 topics at a time. But the ADD may take us all on a roller coaster ride at any time - so hang on.

Hey look at me. Robbi says I can't walk and chew gum at the same time, and here I am writing, calling, taken care of clients and growing a new immune system - all within the confines of my hospital room.

Over the next week I'll be UP and DOWN, so my postings will be eratic...

Dr. Ann gave me more of the game plan this morning:
1) Today is the last of the Cytoxan (chemo), at 5pm.
2) Tomorrow is the big dose of CAMPATH which is the stuff that cleans out the remainder of my immune system. My stem cells will be flown in from Philly.
3) Friday is T-DAY 0
At 8am my room will be filled with doctors, nurses, technicians, 7 frozen bags of my stem cells, a thawing bath, Robbi and me.
It is typical to refer to this day as the recipient's Birthday - HOWEVER - I already have the best birthday I could ever want --- July 28th --- the same day as our Emily. I'm not giving it up!!!
I will be sedated during the process, which takes only about an hour. The side-affects are not going to be pleasant... I'll spare you all the details until I have the actuals. (Think GhostBusters slime).

Right now, I've just got the last chemo and I'm feeling fuzzy. More so than previously. I may sign off for tonite.................................

DAY 21 - 011607

2007-01-16T22:15:00.000-05:00

Robbi's Update:

I never know what to expect when I walk into David’s room at the hospital. I always expect him to be zoned out from all the drugs. But not David, he’s like the energizer bunny. I walked in today and he’s bright and chipper on the phone helping a client and has 2 more calls after this one. I think I’m actually in his way! I’m the one that’s zoned out! All I want to do is sleep and he’s conducting business while the nurses are taking his vitals. He’s just sitting around with all kinds of meds flowing in and out with a bald head, talking on the phone, eating whatever the nurses bring in to him. Not only conducting business but also advising another person who has systemic scleroderma on where to get help. Yep, that’s David. I’m very grateful that he’s so distracted.

Jayme FINALLY got home. 22 hours later. Jay likes to do things with flair. Left us at 10am 1/15 to head for Portland ME airport. Delayed in ME due to bad weather until around 2:30pm. Caught a flight AZ then on to Vegas (now 12am 1/16) and met up with a few friends for dinner, then to El Paso only to get to his car and try his spare key, (why???? because he left his lap top and set of keys in Westborough, and $140. later had it overnited to NM, thank you Bill!) and the spare key set off the alarm and shut down his car. Soooo, he called someone at his station, (now 3am and 5am EST) to pick him up at the airport, drove to the station and took a nap, then took one of the news trucks 45 min to NM (now 7am) to wait for Fed Ex to deliver his lap top and keys 3 hours later. It’s all good though because he has his book, The Power of Intention by Wayne Dyer to read while he’s waiting for Fed Ex. Fed Ex shows up at 9:30ish and he gets his keys and runs out to food shop, (because of course after being away 10 days you have green and blue stuff growing in the fridge) drove back 45 min to El Paso (now somewhere around 1pm) to the station to drop back the news truck to go back to the airport to pick up his car then back to NM to call me and let me know he was safely at home and going to bed, (now around 3:00ish). And the whole time we’re talking Wayne Dyer stuff saying to each other to “live in the moment” so we both don’t blow a gasket! I’m very proud to say we didn’t. J (Love you so much Jay! xox).

Dr. Ann came in to let David know that everything was going perfect. She said to expect that this weekend in to next week he will once again be Neutropenic and won’t feel too hot. She’s been amazing. We’re in such good hands.

On Friday 1/19 David will have his stem cells transplanted and they will begin their way to creating a new immune system. They check him every 15 minutes. The staff is incredible. You know how if you’re in the hospital there’s usually a Godzilla nurse? There isn’t anyone like that here in the whole hospital. EVERY single person we meet we fall in love with. I can’t imagine saying good-bye to any of them. Even the IT people who come in to hook David’s computer up are sweet. I want to bring them all to Westborough to introduce them to all our family and friends! It’s the same with the whole crew at The Hampton Inn. I feel like I’m home here!

Signing off with a smile. Thanks Jay.

~ Robbi

[Patient Update:
I'M NOT THE ONLY ONE---

This posting will introduce you to others who are doing the same as I am - gathering information, to make informed decisions, to fight the good fight:
Each of us comes from varied communities and personal backgrounds, but we face the same challenge.

Devona is a woman from Texas, with Scleroderma. She has taken on a fundraising campaign that has raised $13,000. She is scheduled to travel in mid-February, to Northwestern University, Chicago, IL, to participate in a study that MAY get her the same treatment that I am receiving. The study she is a part of is a 2-armed study. This means that she will be randomly selected to either get the stem cell treatment OR a treatment that is known to have some benefits for some people. The purpose is to compare the results to see if the stem cells really do better. (I had already received the alternative treatment, which is why I didn't choose a random study.)
Devona's treatment is expected to cost more than $100,000. Her insurance has twice rejected her claim.
Please take a look at Devona's story to understand a larger picture of the issues related to stem cell research and how it is needed: http://transplantfund.org/Restricted/patient-detail.cfm?pat_id=1688&CFID=4775768&CFTOKEN=56363841

Next, meet Amy and Sheila. ( Since they are not publicly declared I must be vague.) Amy has a very aggressive form of Scleroderma and is just beginning to gather the information she needs to make informed decisions. The doctors she has spoken with are all focused on their own chosen protocols which means she is left to fend for herself. The insurance industry does not willingly pay for trial procedures, and the funding from the FDA and NIH are guided by insurance, political and drug industry lobbies. This is because we have yet to developed strong patient/consumer advocate systems that may act to bring the best opportunities for us to manage our own health care with results and fiscal responsibility.
That is where people like Sheila come in. As Amy's friend, she has chosen to step in to help her sort through the haze, and act as her advocate.

For me it has been Stacey and Elliott Berger. They are the angels who came forward to challenge the normal flow of our lives and proved that communities (local, regional, national & international) can be motivated to support and act to the needs of a single person.

Lastly, I want to tell you about Jane Erickson. A music teacher from New Jersey, forced to retire from the affects of Scleroderma. It was Jane, who was treated by Dr. Traynor in Aug. 2005 and is still reporting decreased symptoms in critical areas, improved quality of life, and (to my good fortune!) she has chosen to be the kind of advocate that reaches out to find people in need.
Jane has taken on multiple rolls, such as mentor to me and a growing list of others who can benefit from her loving guidance thru the heath care & fundraising maze.
I am forever grateful to her.

There are others that I am meeting and even re-meeting (Such as Edward, who I knew as a child - and now we both share a diagnosis). There is a man who lives less than a mile from my home in Westborough who has Scleroderma.

It's 12:30am... I hate to stop but from the the I wrote "12:30am" an hour has passed and now it is 1:30am... time to sleep.]

DAY 20 - 011507

2007-01-15T23:08:00.000-05:00

I'M BACK... it's almost midnite but I passed up the Ambien so I could ramble on to get all these thoughts out of my head.

Let's see - Friday, was the day we slithered into Westborough. Robbi, always armed with camera, caught these memories:

If you are one of the 3 people that hasn't heard me say this - This is Jayme and Emily: The 2 Most Beautiful People I've EVER Met. It really works out well that they are also best friends, as well as siblings.

This is Bill (Emy's other best friend), Emy, Jay and Max. Max is my HERO.

On Sunday, 011407 I moved in to MaineGeneral Hospital.
This is my home for the next 3-4 weeks.

Jay is wearing his Troy Brown shirt that he has had for about 10 years. That shirt used to drag on the ground when he first got it. He only wears it on game-day.Other points of interest: Robbi is beginning the "home-ification" of the room. The pics on the yellow poster board, the chairs and table were ordered up by her too.
Jay is watching TV, while I'm filling out the gourmet menu selections... and in the upper right you can see my constant companion - the saline solution IV bag.

Robbi says this makes me look like "Sick Man", but HEY - it beats having clumps of hair falling out. That was what was beginning to happen. Robbi called me from the hotel to tell me that she found clumps on the pillow from the nite before. While we talked, I reached up with 2 fingers and easily pulled a clump of 20+ hairs! I didn't feel a thing... That's a weird thing.

I ring up the nurse and asked her to bring in the clippers and give me a buzz cut. The rest is history and captured here.

Oh yah, the pics on my chest are "Flat Sara & Flat Sam". They are the Briss Family Emissaries, who travel the world to participate in our family's lives. My mother was Florence "Briss" Rubenstein. (Many of you have met or heard of my niece, Joyce - she is the family genealogist and travel coordinator for Sara & Sam.)

This is baldy again with Laura. She is one of many highly skilled nurses, aides, technicians, and administrators that are caring for us and answering my calls (even the accidental ones) with just this kind of smile, and and unrivaled professionalism and humanity.

Now, if you know Robbi and I, you know that we are neither tolerate nor quiet if the service we expect is not provided... This team is AWESOME!

My setup crew.

Jay and I - wrapped in the "healing shawl" that Robbi made for me.

This is Robbi's Update from Sunday:

Dear New England Patriots, THANK YOU!! You kept my husbands heart pumping and put a huge smile on his and Jayme’s face. It was a great way to spend an afternoon getting chemotherapy!

We’re all tired but we’re all good. David has 12 less lbs and no hair and his spirits are excellent. The 12 less lbs was what they expected and the no hair part was his choice as his hair was falling out today from the chemo he received when we first got here. He had the nurse buzz him to save the mess. He looks a little sexy actually.
One day of chemo down and 3 to go. Jay and I just got back to the room after a long day making David’s hospital room into “home” for the next month.

The address to the hospital is:
Maine General
149 North Street
David Rubenstein ~ Room 357
Waterville, ME 04901

Hugs to you all.

Love,
Robbi

[Patient Update:

I'll try to keep it short (yah, fat chance...).

T-Day -5 (Sunday) went well (see Update, above).

When we arrived at the hospital, Robbi asked me if I have any second thoughts about what we are about to do – I give it a serious introspective search and said “No.” Especially that I know that my stamina is lessened since I arrived in ME. My overall condition seems to have worsened. At this rate, and according to the probabilities, my life expectancy is very short. The options are a) Do nothing and follow the known path to that, or b) make an informed decision to do something.

I expect that my legacy will always be “Regardless of the outcome, David always chose to learn about it, think about it, and do something about it.”

T-Day -4 (Monday) has been just as well. Of course it's now after 1am Tues. and I'm still writing, but I feel fine... and I don't exactly have any thing special to do today. I do need to eat more. The weight I gained Tues (6 lbs) was all fluid, not nourishment. They track the liters of fluid I get by IV and drinks, and compare the ratio of fluid I pee out. It's called the "I/O Ratio". I keep my geek-side amused by tracking this myself. So far: the "I" is greater than "O", thus the weight gain. The Mad Scientist (Dr. Ann) came in to see me, prescribed Lasix and left. Lasix makes you pee alot. Soon my ratio was leveling off.

Robbi put Jayme in a cab, to the airport. We have set up a "chain of custody" so that there are authorized signatures along the way to be sure that he ends up in Las Cruces, NM by Tuesday. Seriously - with flight delays to contend with Jayme made alternate arrangements that allowed him to reroute to Las Vegas and have dinner with 2 friends he made when he moved to New Mexico. I tell this story to express my amazement at how our babies grow, and make lives of their own and build a world of friends. Where do they learn to do that when all we try to do is keep them home and safe.

I waited all day to get online. The wait was worth it. Debbie brought me a Dell laptop that beats mine. I'm jazzed...

It's now almost 2am. If I don't stop now I'll have to change the title of this posting.

Sweet dreams all... pass the word - Life is Good.

Just got back on line Update - 011507

2007-01-15T20:53:00.000-05:00

Happy Martin Luther King Day.

I have so much to write about, from the events and feeling of these last couple days - but I will get to that soon. First, I want to tell the word of the most special young man I know. Maxwell, my 7 yr old nephew.

Yesterday, Max and his mother went to church, as they do each week. At the point in the services when the congregation is asked if they want to have a prayer spoken for someone, Max stood up and said that he would like a prayer said for 'my Uncle David, who is very sick and in the hospital'. Yes I'm crying again as I type this...

I spoke to Max, and told him how special a person he is for his caring and that he asked all those people to pray for me. I think that what makes him so incredibly special is that, at 7 years old, to have the presence of mind to understand a) the gravity of my illness, b) the power of thoughts/prayers and c) the courage to stand up and declare his love and to take action on it in front of his congregation and community.

We should all be honored by the man he is becoming. Thank you Steve & Jane (his parents).

When my tears are all dried up, I'll return to the regularly scheduled blogging...

DAY 18 - 011307

2007-01-13T17:03:00.000-05:00

Robbi's Update:

Hi All! I’m a little better from this annoying cold. Jayme is sniffling now too. L We snuck into Westborough today like thieves in the night to get a few things including some homemade chicken soup from Mom and from Karen R. and a few much needed hugs. We’re heading back up to ME first thing in the AM tomorrow.

The procedure has moved into high gear. Instead of beginning on Tuesday we got word that David will be admitted on Sunday 1/14. I’m a little facklemped…

I’ll be in touch as soon as things are rolling.

~ Robbi

[Patient Update:

SO! We sneak into Westborough so that we can be with Emily and it is BEAUTIFUL! Robbi's mom & brother Steve, Ben, Max (my nephew), and Bill are with us and it a short but very sweet moment.

I have to admit that I was very anxious to have all these people come into the house. I know it's bordering on compulsiveness to worry... but I know that I'm just a few days away from "The Show" and I just don't want to carry something in my system that will run rampant once my immune system is wiped out. Wrapped within my own anxiety, I nearly missed the beauty that was surrounding me.

Debbie (The Boss) called while we were sitting around - I am to report to the hospital for admitting at 8am SUNDAY! The original date was Tuesday. So this when the business side of medicine gets to affect the whole process. The initial plan would have required that my frozen stem cells be transported, from Philly to Waterville, next weekend. Well the Philly Red Cross had an issue with that. I don't know the details, but it is safe to assume that weekend transportation is more costly than the same amount of driving hours on a weekday. Now, with my cells being delivered for Friday the 19th, I'm beginning the Conditioning Phase tomorrow.

Here is how it happens:

TRANSPLANT DAY -MINUS 5 ---
(It's like a count down to a rocket launch.) The intravenous lines, in my chest are going to get a heavy usage now. 1st I get a bag of Mesna (do you remember that this stuff is to protect my bladder?). Then the chemo (cyclophosphamide, a.k.a Cytoxan). Then more Mesna - cause you can never be too careful about my bladder. and then about 210 hours of saline solution to flush me out. Of course they want me to get up out of bed as often as possible to urinate (can I just say "Pee" without offending my reading audience - thank you).

TRANSPLANT DAY -MINUS 4 --- thru Minus 2 (Thursday)
The same regimen as -5. The difference is that today, and each of the next 3 days, my body is getting the immune system kicked out of it. Chemo leaves you feeling tired for a few days after one dose. I'll be getting 4 consecutive days without rebound time. This is when I am likely to get the side-affects: nausea, hair loss, x-ray vision and the ability to leap tall nurses in a single bound. I can't wait to see thru stuff...

TRANSPLANT DAY -MINUS 1
This day I get a special chemical called CAMPATH. This is like a sweep up treatment. CAMPATH goes thru my blood and attaches itself to any remaining cells that remain from my immune system. Once they are attached they get taken out in my pee (ahhh, it's nice not to have to be so clinical).

TRANSPLANT DAY -ZERO!
I will have to get more of the details to write this one... Stay Tuned - Film @ 11.]

I want the last words for today to be from Robbi's Update for tonite:

I remember the day I heard David was diagnosed with this disease called Scleroderma. It became a wake up call and I didn’t think I was asleep. I thought that we could just educate ourselves about it, read everything there was to read, make the changes in our lives we needed to make, and just go with the flow from there. Never in my wildest dreams did I think we would be where we are now. I never imagined that I would be so humbled by such care of love. Never did I think I’d be sitting next to my husband while they drain the life out of him to turn around and give him a new life that could give him many more years with us.

I have no idea what is going to happen over the next 2 – 4 weeks, (thus the migraines) but what I do know is that the love and support I have felt from you all is the foundation I’m able to keep myself upright on. I’ve learned how imperative it is to be by your family/friends when they are paralyzed in fear. Where as before I may have thought it was best to mind my own business. I’ve learned to be unselfish and thoughtful, where as before my pride might speak before my heart. I’ve learned that it’s beautiful to be vulnerable; it’s when we are open to learn so much. Before I might even be ashamed of needing anything from anyone.

We all have our “stuff”. Our “stuff” can scare us into acting helpless or it can allow us to open ourselves to be helpful. Nothing is more important than to live in the moment we’re in and make the very best of that time.

On this night before we begin this intense procedure, I thank you again from the bottom of my heart. I feel your love and prayers and we take them with us tomorrow morning.

Love,
Robbi

DAY 16 - 011107

2007-01-11T17:45:00.000-05:00

Robbi hasn't written an Update in 2 days. She is focused on Jayme, me and getting her own health back to normal. Some issues with our RX insurance, regarding the limits on her migraine meds. Why is it surprising to them that she may experience a greater incidence and intensity of headaches while she is fully involved as my caregiver through a life-threatening procedure?

We skipped yesterday because nothing much happened all day, until I went to get my lines checked in the late afternoon.

I am not one to attack the insurance industry. I have a clear sense of the business of health care. That does not mean that the rules can not be / should not be challenged. This is one such rule.

As the day progressed, my coughing increased. Now, this is not the cold. I think we beat that out of me. This cough is sclero-related. It's a dry non-productive cough that just gets more persistent. It takes a toll on my energy and really works hard on the abdominal muscles. By the time I got to the hospital, the nurse was concerned that the risk to my overall health could become too high if we didn't intervene. She ordered up some does of medicine, including cough meds w/ codeine. I have these meds already but had stopped taking them when the cold was under control. The lesson we learned - I have to use low-moderate med doses to stay atop of this cough so that I can conserve my strength. In a few days I am to be admitted for the BIG ONE and I need to be as strong as I can.

Once I got the meds, my cough dissipated over the next hour.

Last nite it was Applebee's take out and I ate the most for 1 sitting since coming to Maine. We settled in for: News, Wheel of Fortune, Jeopardy, and Everyone Loves Raymond. We watch these, not because we like any of them (although Jeopardy is a favorite). We watch them because they are "white noise". We all get to work the computers, read and knit without missing anything.

Then Jayme found The God-Father! He and I watched it. Robbi's cold is really settling in. She took some cold meds and went down for the count. She awoke several times and I saw her reading at 6am.

Today, was a very quiet day. Robbi and Jay went out for a while. I cleaned and sanitized the humidifier. Low appetite. Jayme and I have been busy playing with a gift from Cindy P. & Family (friends from Westborough). Texas-Hold'em electronic game. we won the tourney on the first try. It took us several hours... then we found it hard to get past the first couple of rounds.

I've been helping a couple of clients and my friend Skip has thus far jumped in to assist some that needed face-2-face care. Thanks to all of you, for continuing to trust me.

Tonite - we watch some more TV and hope to rest up. Robbi really needs a good nite sleep! It's 7pm now and we're all settling in.

Love to all - David

DAY 13 - 010907

2007-01-09T20:57:00.000-05:00

Robbi's Update:
BORING!! Today was absolutely BORING!! That’s right, we did NOTHING!! We sat around and did NOTHING ALL DAY!! We are blessed!!! ~ Robbi

[Patient Update:Stem cell Harvest was successful. The cells are in Philly, PA at the Red Cross. Yesterdays events are captured in photos. Here are a few of our team members:

Dr. Ann & Nurse Cindy... and me. Yes I have the Bluetooth in my ear. HEY - I'm not on vacation here!

Jayme (The Son), Maura (The Trainer), and the rest of us.

While they play with machine, I'm working hard at Tetris!

Cindy driving the apheresis machine.

I’m holding the bag of my stem cells!!! It’s a feeling that is indescribable.

Robbi and I autographed the machine. We are honored to be the first at MaineGeneral – 1/8/2007.

This is the cooler that my stem cells were sent off in… on to Philly and a slow freeze.

Next on the agenda - - -
For the next 7 days, I visit the hospital every other day to get my lines flushed to be sure they are ready for the next big phase.

Looking ahead - - -

Next week (Monday?) I get admitted to the hospital for the high dose chemo that wipes out my immune system.

STAY TUNED... FILM @ 11.........................

DAY 13 - 010807

2007-01-08T19:10:00.000-05:00

Robbi's Update:

Today my son puts it best:
---"We harvested Dad's stem cells today! It was a 5-hour procedure with an amazing machine that Mom and Dad signed afterwards because we're the first ones to use it at this hospital. It has a centrifuge. Mom took a picture of Dad holding the bag of stem cells before they tagged it and I thought: "Holy shit... there could be 50 more years in that bag."---

It was an amazing day. When we got back to the hotel we looked out the window to see a FULL rainbow. Jay and I ran outside to experience what felt like a hug. Today we are grateful on so many levels.
~ Robbi

[Geek Update:

Harvest #1 is in the bag. It's was so simple for me. I just laid there and let the blood flow. But you watch and listen to the operators and you learn how amazing the whole process is. One line syphons my blood into the machine, where it is centrifuged to separate it's components by density. The heaviest components of the blood sink to the bottom and the lighter stay on top. Imagine a stream flowing by and at the bottom is the heaviest stuff (like pebbles and slug)... the next layer is clearer but still mixed with stuff we don't want... then the top layer has the cleanest fluid - in this case - the stem cells. To capture them we need to draw them off the flowing stream as it passes. A tube is dipped into the passing stream to suck off the good stuff. Now as simple as this sounds it's even more intricate. The quality of the fluid drawn has to be assessed by the tinge of color that the fluid has. They literally use a color chart to match the fluid - if it is too much red then that means that the tube is drawing more of the sludge. If it is to pinkish, then they are not drawing enough of the stem cells. The tube is adjusted tiny amounts up/or down to keep it at the proper level.

Maura, the woman who came in to lead this process was awesome. Cindy and Terri, my nurses, operated the machine under Maura's guidance and mentoring. The entire 6 hours involved questions, challenges, what if scenarios, and was all about doing this process with intense caring and focus on results. As the patient, it doesn't get better than this.

As the procedure progressed, I experienced several typical side-affects. First, I had a mild tingling sensation in my lips. This is the result of a calcium depletion that occurs from a chemical that is introduced into my retuning blood (to stop clotting). To replenish calcium, i had to take 2 TUMS 2 hours before the procedure and again in the middle of it. The other affect is fatigue.

For nearly the entire 6 hours I laid back in a recliner and listened to the chatter. Robbi, Jayme, Maura, Cindy, Terri and the parade of interested parties that passed thru my area all day provided a mix of stories, education, and laughter - all of which served to stimulate, feed and calm my mind. When it was over, we went back to the hotel and as we settled in, we got a call that I had to return immediately! The harvest was fine, as far as we know, but there are additional blood samples that are required for the Red Cross to process and store my stem cells. The actual results of the harvest will be measured and reported later today. Once I gave the additional tubes of blood - everything was on the way!]

[Patient Update:
Feeling good today (Tuesday). My weight is down to 167.5 lb. Blood pressure and temp are running good. Thus far, my appetite is diminished but still there. Last nite I eat more than I had in weeks.

Yesterday was an amazing experience. Most notable was that Jayme, who has been living on the outside edge of my treatments is now a player. His awareness and intelligence are incredible. His sensitivity and compassion is beautiful to behold. These are the reasons why I declare that he, and his sister, are the 2 most beautiful people I've ever met. As unique as they are, individually, they are identical at their core. They are the best medicine.

Send me your questions - I'm sure I left out some details.

David]

DAY 12 - 010707

2007-01-07T18:37:00.000-05:00

We got word that tomorrow morning at 9am we reap the harvest! It’s a 5 hour procedure. We will bring games, movies, crochet stuff, cell phones, food and drink. This is truly a fascinating experience. To watch them hit David with a mega dose of chemo to kill all his white cells, then to hear the numbers go up each day because his body is creating new stem cells, it’s amazing! The whole hospital is so excited for tomorrow I feel like I’m going to a party! We’re going to sign our names on the Aphaeresis Machine being the first ones to use it. This is the machine that takes David’s stem cells. There is no pain involved, it’s all done intravenously.

Jayme is recovered from his trip around the country. Thank goodness our room is right next to his. It made it simple for him to find us this morning. He spent the day cheering for the Pats with David and playing games on his computer. He’s enjoying being 12 again. I’m sleep walking today but managed to get some laundry done and enjoy the noise in our room.

We’re up and out of here at 8:30 tomorrow. Tuesday is a 3 hour procedure and it starts at 6:30am. So glad Jay is here. They can let me know how it goes!! J

~ Robbi

[Patient Update: Harvesting in the morning. Debbie called to tell us that my count this morning was 19314. They lined up everyone for tomorrow.
Robbi is exhausted. She may have a cold or allergies... either way, it's taking a toll. She is asleep at 7pm tonite. Jay and I may have worn her out with the overdose of football-geekdom.

I ate well today. Jay came to the hospital. Robbi still hasn't gotten the nack of driving a wheelchair... sure she hasn't dumped me out of it... yet...

David]

DAY 11 - 010607

2007-01-07T09:24:00.000-05:00

Word for the day – Augusta. As in Augusta ME.

Our brilliant son booked himself a round trip flight to Augusta, Georgia. No, I’m not kidding. I left at 1:00 to run a few errands grab a bite and pick him up at 3:15 this afternoon. After Jay realized his was not heading for ME, he called David and they found a flight to Portland. The closest he could get to us was Portland which is an hour and 15 min away. Where as Augusta ME airport is 15 minutes away. And here I was so excited! So that brought his travels beginning at 4am from NM to Dallas TX to Charlotte, NC to Cleveland, OH and then to Portland ME, (yes I made sure he didn’t book it to Portland, Oregon) and I picked him up at 7pm. It’s all good. It’s all good. It’s all good… I got to stop off at Freeport and do a little shopping. See, it’s all good! He and David are already yelling at some game on TV.

Meanwhile, back at the ranch…David’s numbers are on the rise and it looks like we’re right on time for harvesting. We’ll have a 24 hour heads up which I will pass along to you all.

I’m a little pooped out from my head spinning so I sign off tonight with a smile on my face and a wish for you to enjoy the rest of this delicious warmth.

~ Robbi

[Patient Update: Nothing keeps me felling young and vital like rescuing my son from himself. Genius has it's quirks... and Jayme is a true genius.
Today, I want to answer some questions that are being asked by blog and email...

1) I want to welcome Maryanne, who is the coordinator of the Worcester (UMASS) Scleroderma Support Group, to this blog. I look forward to share with the group - now and when I return to MA.

2) Nutritional Stuff - My appetite is greatly reduced. Probably from the chemo. I've been eating a lot less for 2 years now. My weight peeked at about 200lb before Scleroderma. My "playing weight is ideally 185... now I'm about 170, and holding steady. Suppliment drinks keep the caloric counts steady, and I still have a liking for the high fat foods with protein - eggs & cheese, burgers & cheese, ice cream & cheese (bad joke, but you get the idea). Nausea has not entered the picture yet. It's expected, but not till later when I get the high doses of chemo.

3) A special welcome and a thank to Jane Erickson. Jane has been my mentor and guide through this process. Jane received a stem cell transplant w/ Dr. Traynor, in August 2005. Last nite and tonite she is directing "Menotti's Amahl and the Night Visitors". It's an opera, designed to hook kids into liking opera.
Prior to Jane's treatment, many of her symptoms were more severe than mine. Now she's gradually returning to her passions - music and giving of herself to to her community. She is a leader in the advocacy of stem cell treatment (especially without radiation).
I am grateful for Jane.

4) Now to clarify "the woman from Colorado" mystery - MaineGeneral needed new equipment to perform this procedure for me. The machine that harvests my stem cells is called an APHERESIS unit. This machine draws my blood out of my body... to separate the proper cells ... and returns the remaining blood back into me. I am to be connected to it for about 5 hours. There is no pain or discomfort as they use the lines that were inserted into my chest on Day 1.
The machine requires special knowledge to run it. The staff here has been trained but since they have never had a real patient - the company is sending their trainer back to Maine to lead the team. She is "the woman". This speaks highly of the machine company, MaineGeneral, and all the professionals on our team!

And now for a sneak preview of Day 11...
Yesterdays ANC was 9000+ and at that pace we are looking for Monday for Harvest. Slept fair last nite. I am experiencing the bone aches that signify the rapid growth of stem cells in the bone marrow. Such rapid growth creates literal pressure inside the bones... who knew???

Pats game starts in 15 minutes. Jayme and Robbi are here with me and Emy is very near by. Emy is also taking on the admin. of this blog - THANK YOU!!!
Jayme bought me a Patriots balloon and it's clipped to my keyboard!!!

Call from the hospital - ANC = 19314... don't know yet if we are a go for tomorrow.

David]

DAY 10 - 010507

2007-01-06T09:21:00.000-05:00

Word for today – Nadir – meaning lowest point. Rock bottom. David’s white blood cell count has hit this point and his new stem cells are growing. This is what we’ve waited for all week. The harvesting of David’s stem cells will happen either this Monday or Tuesday morning. Meanwhile he’s feeling much better. (now my throat is a little drippy, but enough about me). He went into the hospital today without the wheelchair! Nurse Cindy was so excited to see him walking into the room. We even managed to eat inside Applebee’s. I almost felt like I was on a date. Except for the fact that I was disinfecting everything. The poor waitress, I really didn’t mean to spray her in the face. But she took it well.

I’m heading into Jayme’s room to put mints on the pillows and Lysol the walls for his arrival tomorrow. Think of David while you’re watching the Pats this weekend. He’ll be yelling at the TV with Jay and I’ll be smiling.

Have a great weekend!

[Patient Update: Don't let Robbi fool you. She is coming down with a cold, and I hope that is all it is. She is working so hard to manage much more than than what is going with me, and it is taking a toll. Now, don't think that you (any of you!) can help her or ease her burden - just love her as you always have and send hugs and smiles. We are amazed to hear that many of you look forward to reading her nitely message - (the personal, unedited version of what I publish on this blog) - please continue to comment.

Blogging is kind of like standing on a soap box and yelling at the world, from a sealed room. You know someone hears you, but you don't see the smiles, or smurks, or if they are running away.

Yesterday was the best yet! As Robbi noted - I walked in to the clinic. The total distance from car to falling into the chair was about 200 feet (with an elevator breeak in the middle). All systems checked out well with Cindy.]

[Geek Update: Debbie (The Boss) called later at nite to tell us that the cell counts are rising! I bottomed out with an ANC (Absolute Neutrophil Count) of <66. The latest test shows a count of 4100. It is expected that I will reach approx. 40k-50k at harvest time.
Debbie also told me that the women from Colorado, who will manage the harvesting, is expected here on Sunday nite. All systems are GO for Monday morning (about 11am) to be connected to the apheresis machine which draws my blood thru and separates out the stem cells. That date can be changed, depending the actual readings each day... stay tuned... film at 11.

David]

Hugs,
Mom ~ Robbi

DAY 9 - 010407

2007-01-05T13:04:00.000-05:00

[Patient Update: OK, I'm falling behind on my posting times. By the time most of you read this one Robbi will be getting today's update ready.
Read Robbi's update and I'll follow up further down...]

Today’s word is Codeine. It’s wonderful. David had a good night sleep and has been resting pretty much through the day as well. The relief is overwhelming. When this is over I’m going to buy t-shirts for Codeine and Ambien! Never thought I’d be so grateful for these 2 drugs. It’s like the 70’s all over again except its necessary and my hair isn’t so big.

David is a little better in that he’s able to rest without non stop coughing, but he’s absolutely wiped out. The scleroderma is one thing, add a huge dose of chemotherapy and the cold he has and you have zonked. It was a little scary to David to be completely exhausted from just a few steps of walking. We’ve been using the wheelchair because David is so easily out of breath. Nurse Cindy explained to us that this was perfectly normal and expected. She made it clear that he will feel this way and a lot worse before it’s all over. Because we came very prepared and read up on every possibility, none of this is totally unexpected to us. But it’s nice to hear that all is normal.

I took a little ride to Bangor today. I almost continued to Canada but thought better of it. David wanted to hang out in the room and rest and I took advantage that and the gorgeous weather. Bangor is about an hour north of where we are. The ride was beautiful. I was on the look out for a moose. Sadly, I haven’t seen one yet. I did however find an LL Bean outlet and a Borders. That made my day! Warm fuzzy shirts, ½ price calendars and more books to read had me a little giddy.

1 ½ days until our arms are around Jayme! I’m so excited for so many reasons. David needs his Pats, political arguments and History channel buddy! Best medicine!

[Geek Update: The watch is on for the right amount of the stem cells to flowing in my blood. Today's test, compared to yesterdays, will show us if my cells are beginning to flow - or if the old cells are still going down (which has to happen first). All vital signs remain good. I run a 99+ fever on/off thru the day. This is considered OK as long as it is not persistent and reaching 100.]

[Patient Update: I heard from a friend, Marilyn, who also has Scleroderma. She remarked that when saw my picture on the blog - SHE HAD NEVER SEEN ME WITHOUT MY HAT ON!!! I guess I tend to wear it alot. Did anyone else notice this trait of mine?

I slept much better last nite. I'm spending nearly all my time on top of the bed. I get up to take care of things I need, most of time, until nite. I get really drawn out by then.

It is so cool that Robbi found Bangor yesterday. It will keep her sane - and I need her to be so. Nothing cleanses her soul more than shopping, retuning what she bought, and buying some more...

Jayme lands tomorrow - and Robbi has already made sure that path is literally cleared from his condo in New Mexico - to our door. Even Air Force One will be grounded to keep all systems directed to THE priority.
Emily drives up Sunday... (thus the road blocks that limit your travel on Sunday)... and we will be ONE.

It is very good that we are only 3 miles from the hospital and that the parking is 25' from the entrance, Robbi sticks my ass in a wheel chair and we are at the nurses station - all in about 15 minutes. It's like flying thru Providence instead of Boston - the care is just as good (may be better) and the ease/ and service is GREATER!

This is one of those special moments when I am overwhelmed with gratefulness for all of you and what you have enabled me, and my family to do.

Love David]

Signing off for now.

~ Robbi

DAY 8 - 010307

2007-01-04T10:56:00.000-05:00

Word of the day is POOPED! Not much sleep in room 105 last night. David had a nice new sounding cough that kept us wondering if we were going to run over to the hospital or tough it out. At 4:30 am and no danger signs, (high fever, chills, my head exploding) we decided we no longer had the strength to run anywhere and stuck it out. We headed over to the hospital for check in around 3:00 and they were okay with his vitals. Not so okay with his cough. So they have added another antibiotic and some heavy duty cough medicine. Our nurse Cindy said the cough medicine was to quiet David long enough for us both to get some sleep. She had me at quiet! I couldn’t run to CVS fast enough.

Meanwhile, they are testing David’s blood each day now to check the white cell count. We’re now watching for harvest time. It could be as early as Friday but more likely Sunday or Monday. I have a bet going with Cindy our nurse that it will be Friday and she thinks Sat. The winner gets a Dunkin Donuts coffee. By the way - Cindy slaughters moose in her spare time. No, I’m not kidding. She takes great pride in this. She and her whole family hunt and slaughter moose. She's a tough woman and you don’t want to mess with her. She’s a wonderful nurse. I’m behind her when she’s working on David.

Counting the minutes till our arms are around Jayme. Emily joins us on Sunday or Monday to complete the hug.

Thank you all for the notes and updates on your lives each day. It makes me feel like I’m not so far away.

[Geek Update: Now that I'm publishing Robbi's updates in the AM, there may be some repeated info. Hey - I'm new at this game, we'll work it out.]

[Patient Update: WOW those cough medicines are really good. I think I slept more in one nite than in the previous 3.
When Cindy assessed my status yesterday, a key question was - how much time am I spending in bed. I hadn't realized that my recline-time has really increased. I'm on the bed or in a reliner chair for more than 1/2 of my day... much more. Robbi is good at getting me out to "air out my ass". That is the medicine she has used to get all of us healled faster than most.

The fact that I'm up at 5:30am and still working on my stuff at nearly 8am is testimony to the fact that I am at least mentally alert.

I really appreciate the emails that a few have sent. You are so kind and encouraging - more than I can express. I forward your comments to Robbi, as well. If you prefer to email rather than comment to the blogs, that's cool. I'm doing well with replying, so keep them coming! - David]

~ Robbi

Geek Update: SCT Timeline - revised 010307

2007-01-03T18:29:00.000-05:00

This timeline is updated. It will be affected by weather (highly unlikely), my health (also unlikely) and how well my body performs within each phase.
I hope this works as a tool to increase awareness and knowledge. There is so much more to accomplished by what we are all doing here, than just prolonging a single life.

Please be inquisitive and assertive with your questions. If I can't maintain the blog, I'll get the answers to you!

Love & thanks for your... EVERYTHING!!!

David

DAY 7 - 010207

2007-01-03T11:44:00.000-05:00

My word for today is Neutropenic – meaning lack of white blood cells and hard to fight infection. That’s what David is, thus the cold he has. And this cold won’t let go. They’ll be checking him out tomorrow and it just feels good to know he’s in their hands. No fever or any other danger signs so we’re okay. It was a very wise thing to put him on an anti-biotic. I got him out for some fresh air today. He has a new satellite radio to program so it’s easy to persuade him out the door. He bundles up and plays with his new toy while I run a few errands. David is an easy patient as long as he has his toys. We had cheeseburgers tonight for dinner from Ruby Tuesdays. I couldn’t believe David was in the mood to eat that so I couldn’t pick them up fast enough.

As you can see my inventory of “Healing Shawls” is growing fast. They’re working for me already! My hand is a little cramped but my mind is calm! Having HBO and Cinamax is catching us up on movies that we haven’t seen. The good news is we haven’t seen most so we have lots more to catch up on.

Meanwhile we’re so very excited to see Jayme in 4 days 3 hours and 22 minutes!!!!! Very soon the 4 of us will be under 1 roof and nothing could fill our hearts more than that.

I hope everyone made it back to school/work okay and all is well. I miss you all very much. G’nite for now.

[Geek Update: The weak link in this process is me. I try to get Robbi's updates posted the same nite that she writes them so we are in real-time. However, I didn't have the focus of thought last nite. You can see that this didn't get up on board till mid-day the 3rd. I can only imagine that as I get deeper into this process I'm likely to fall further behind. Don't worry. If anything becomes really bad, I'm sure the word will get out to all of you soon enough.]

[Patient Update: It was a rough nite. My cough became more of a cold-cough and my temp rose to 99.7 about 4am. We considered calling the hospital. They told us to watch for signs of infection and if my temp rose over 100. We expected to go in this morning to get a quick check, but when I got up arount 6:30 the temp was down and my cough eased a bit. I'm glad we didn't over react. You get so worried that you don't want to miss a sign that should have been responded to and still not be a Chicken Little. As I've said - I'm a baby, and I know it.

I got up and bathed myself again and it always feels better after that. The activity makes me cough more but it is a Sclero-cough which I've lived with for 2+ years. It's easier to deal with it now be cause we are doing something about it.

So, here is one of rare pics of me in my hotel room -

You can see the essence of my existence (except that Robbi isn't in view) - laptop, a drink, the fridge/freezer and my TREO is charged and ready for your calls! Just remember, that if it goes to voicemail, it may be a while before I get back to you. A message now and then is nice to listen to...

Today, I have an appt. to get my lines flushed. Stay tuned... film at 11...]

~ Robbi

DAY 6 - 010107

2007-01-01T20:06:00.000-05:00

My mega doses of zinc, Echinacea, Air Borne and vitamin C with Rose Hips didn’t cut it. “Natural” is wimpy when it comes to standing up against a massive dose of chemotherapy - David’s cold is a little worse today.
Unfortunately he’s coughing on top of his coughing. We checked in at the hospital today so they could do their thing with David’s tubes. They checked him out, too. They’ve put him on Zithromycin (an anti-biotic) just to be safe. We want to avoid infection. He’s also on Mucinex to help with the coughing. Actually I think the Mucinex is already helping, I haven’t heard him cough in a full 5 minutes!! Other than that he’s great! I’m on my 5th shawl and it was a good day to hang out and watch the ice melt.

We’ll hang out tomorrow and I’ll be shtooping David with lots of liquids and any nourishment I can get into him. The weather sucks but it’s warming up this week so that makes me very grateful. Happily, nothing more to report for now.

[Patient Update – Robbi pretty much said it all. Although she is unlikely to ever read these blogs I want you all to know that she is the best medicine I could have. As soon as I begin to get a bubble of a thought that I might want something – it’s there in front of me. It’s more powerful than I can explain in words… I’m so thankful for Robbi.

Even with all the studying and research, I hadn’t realized that I will now become neutropenic. This is the stage at which my white cells are insufficient to protect me from infection. My immune system hasn’t been wiped out yet, but the chemo I received was enough dosage to set me back.]

~ Robbi

Day by Day w/ Robbi and David

2006-12-31T19:55:00.000-05:00

Stay with us, as Robbi writes the basic updates (as only Robbi can!). David will provide some details when ever he feels up to it...

DAY 5 - 123106

2006-12-31T18:59:00.000-05:00

Today David has a cold. He’s fine and I guess it’s to be expected. First because we’ve kept every germ away from him from Westborough to Waterville, and 2nd his immune system is a little compromised at present. I’m pounding him with zinc and vitamin C. I even made him get outside and get some ME air into his lungs.

I found the basement floor of the hotel and did laundry and found a gym and pool as well. No, I’m not getting the suit on and diving in but it’s nice to know it’s there just in case I feel like a workout. I just may surprise you all and come back all buff and pumped. We’re expecting a big storm tonight into tomorrow. Big storm to these folks is getting out the shovel, to David and I it’s getting out the LL Bean gear! Yes of course I packed it.

Last day of 2006. How do I begin to put this year into words? I can’t. All I can do is feel. What I feel is love and compassion thanks to you. David put it best when he said, “Everyone with a disease should be treated like this.” Nothing has taught me more than what I’ve learned in this past year.

I wish you a year filled with love and laughter. Because with love and laughter you can get through anything.

Happy New Year my dear sweet family and friends. Thank you for being by my side. XOX

[ Patient Update: Debbie called today, just to check in on us. Robbi is pumping me with Vit. C and Zinc – there is surely going to be a world wide shortage after this week.
I feel feverish but my temp is normal. The hospital bed allowed me to rest without aching all over.

This week’s plan:
Several visits to 3-North (the inpatient ward) just to get the lines flushed out and check/clean the dressing.
The next major milestone will be when my stem cells rapidly multiply & mobilize. I am told that I will feel a lot of discomfort because the cells will create pressure in my bone marrow. This should happen sometime between Friday, Jan. 5th – Monday, Jan. 8th.

~ Robbi

DAY 4 – 123006

2006-12-31T18:55:00.000-05:00

Not as bad as we expected. Slow and steady was our mantra for the day. The day began real tough but as it progressed David came around more and more. I called our head nurse and told her David was very uncomfortable, and didn’t sleep again. It was decided to order up a hospital bed., from a supply company. In 2 hours it was here and set up. They were amazing. I’m grateful every single day here. I ran a few more errands, (There is always a flipping Wal Mart and I can’t stay out of there!) in the SNOW STORM driving 4 miles an hour but I got everything done and came back in time to direct a crew in rearranging the furniture. We made it look like home and we’re very comfortable.

I just knocked David out with an Ambien because he hasn’t had a good night sleep in 2 nights. I don’t expect to hear much from him for the rest of the evening. We’re hanging out watching movies and I’m crocheting for the rest of the weekend because I’m making everyone in ME a shawl or a scarf!

I’m thinking of you all. Miss you all very much.

~ Robbi

DAY 3 – 122906

2006-12-31T18:54:00.000-05:00

Today I shopped for presents for everyone in the hospital because we are in love with the whole team. I got to David at around 3. There is some very cool shopping around here. David was entertaining everyone in the hospital getting a sponge bath with the nurses and serving them the candy I brought in. We were discharged around 5:30 and came back to the hotel to get ready to go to our doctor’s home for a party. Very surreal…I didn’t dare get into a Scrabble game with a house full of doctors and nurses. They were using words I never want to know the meaning of! However my team won a game of music trivia. I had huge advantages because the music was from the 70’s, and I had David - “Mr. Information Man” and Dr. Traynor’s husband – “Mr. Information Man 2” on my team. Met their 2 horses with heads the size of my body and their 4 dogs. David and I had a ball.

Now back to reality because we’re told David will feel shitty the rest of the weekend into the week. We just hope it’s not too bad. But if it is I’ve assured him that I can go right next door to the drive up Baskin and Robbins and pick us up a couple of banana splits.

~ Robbi

Day 2 – Chemo Day – 122706

2006-12-31T18:47:00.000-05:00

Today was chemo day. David will be at the hospital until tomorrow late afternoon or Sat morning. He’s doing great. Everyone at the hospital is in love with him and they are so sweet to us. I have a big basket of candy in the room for everyone to eat when they come in. I want to buy them all presents! J

Our doctor, Ann Traynor invited us to her house tomorrow night for a party she’s having anticipating we would be on time and released tomorrow afternoon. But we got a late start with the chemo and they fell 5 hours behind so instead of being released tomorrow afternoon it looks like it will be Sat morning. We would have loved to have been there. We would have known everyone there! It’s our whole staff. They were all excited that we were coming and we were too.

The nurses are telling us to expect that David will not feel well this weekend from today’s procedure so we won’t be snow boarding as planned.

[Geek Update from David: The reason for the delay is very interesting.
Since this is the first time MaineGeneral (MGH) is using this protocol, they need to complete processes that they’ve never done before. For instance, they had to draft and sign a contract with a local lab so that specific blood tests could be completed.
I feel so special…]

[Patient Update: Once it all began, it went like this…
Great staff! Even as they work with a process they’ve never done, they are professional, inquisitive, and honest. We are all in this together.
Dr. Traynor (here-after referred to as Ann)
Big dose of chemo, precluded by a drug that helps to minimize (or avoid!) the damage that the chemo can do to my bladder. After the chemo it’s 20 hrs of saline solution to wash me out. I’m in bed for the whole thing, although I can get up to take care of bodily functions. All day and nite I have a ritual that includes walking my IV tree around. I’m up and about and using my laptop. I wasn’t online during this stay, but I will be when I check in for the transplant.
So much of the day I was meeting people who are involved. Some are medical staff, and some are administrative. We all know we are apart of something very important.I didn’t sleep at all this nite. No pain – just could not fall asleep.]

That’s it for now. I’m taking advantage of not having to get up early tomorrow morning. I told the nurses I leave David in there hands.

2006-12-31T18:45:00.000-05:00

DAY 1 – 122606Big thumbs up. David got his line put in his chest this morning and he’s been resting. They told me it would be about a ½ hour so when they brought him out an 1½ hours later I was a little shaky. But they said everything went excellent and David came out acting like they gave him a pedicure. I dropped him off at the Inn and ran around doing errands getting things together for the room that he needed and some scripts.

[Geek Update: When we walked into the hospital, we were immediately met by Debbie (The Boss). She introduced us to the person who heads up the engineering team. He has been working to ensure that the hospital and Inn are set up to provide the proper physical environments.]

The whole town knows us! I went to CVS and the woman says, “Hi Mrs. Rubenstein”. It’s scary! Tomorrow David will get admitted to the hospital and begin chemo to stimulate his stem cells. Then he’ll be released late afternoon on Friday. This weekend we’ll be hanging out and hopefully David won’t be too bad from the treatment.I feel a little like I’m walking around in someone else’s life. I can’t believe we’re involved with something of this magnitude. We have a 28 page contract to review tonight. Basically it says that if anything bad happens they never saw us and we have to agree that’s true.I’m keeping busy and crocheting away! Already on my 3rd shawl… There is a yarn store down the road so I’ll be buying more yarn. I’ve already taken a whole laundry basket full. We asked the front desk to bring us in some extra waste baskets and another lamp, they brought them in plastic bags and they had sterilized them. They don’t realize it’s not necessary to do that right now but it’s nice to have them so attentive to the details, so I’m not saying anything. They come all suited up like they would be toxic to us. It’s kind of cool actually. I’m just afraid that the first germ that hits me I’ll get the flu!Hope all is well with you all. I feel like I’ve been gone for a year!

- Robbi

Act 1 - Tough to follow

2006-11-05T22:21:00.000-05:00

Now that the fundraising phase is closing, I'll want to acknowledge all the people and acts of kindness that have made a difference in my life, and those of my family.

I'll not be able to mention them all in this posting, or even in a few of them. It will unfold as life does - randomly, and with reason.

For you - Robbi, Emily & Jayme - I am grateful, for your love, humor, honesty, and passion. You always seem to know which of these I need, at the exact right moment.

Stacey, Elliott, Rachel, and Shira - As a family of friends, you have demonstrated unselfish giving. As a family unit you put your lives on hold, to be of service to my family. My family is grateful. Our community has been enriched by the example and success of your leadership. Stay tuned for continued updates... feel free to post your own.