Always looking for solutions.

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

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

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

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

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.

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.

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

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

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.