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.