Where Are They Now?

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

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

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...