Wednesday, January 20, 2010

The illusion of immortality

The Modern Family


Kevin and baby Kevin

The Dison Family

Bowling Night

I apologize for my tardiness in sharing all the good things happening in our lives. Interestingly, herein lies the dilemma. Songwriter, poets and bloggers often lose their muse when things are going well. I psychologically crossed some invisible thresh hold about 6 weeks ago where I now no longer see a mortality date stamped upon my life. Currently I have returned to the billions who are emotionally unaware of when they might die and live life with the illusion of immortality. I am totally fine with that. Back to the "eternal sunshine of the spotless mind" where my psyche ignores my intellect. Prepare for the worst; Hope for the Best; and plan for ten years from now.
Christmas was fantastic. We had all of our children and daughters in law here. All of Barbie's family was here including her brother Daniel, his wife Emma and their two children, the immensely precocious and overly cute Elena and the well named Kevin. We don't see them much as Daniel is in medical school in Wake Forest in North Carolina. Our visit was interrupted by my 3 day excursion to the Big Apple for the wedding of a very close friend, Brian Ciccotelli and his bride, Isa. The entire two weeks was filled with reunions and a house full of activity. It was great. I miss them all.

Now it is back to life. I work, Barbie is in school with inorganic chemistry and microbiology and Caitlin has the same busy schedule. A doctor friend asked today if I couldn't just find a way to be on disability; I responded, "I love to work and will continue as long as I can." What more can I say.

Wednesday, January 6, 2010

Health Update

I thought I would leave a few lines on how goes my health, with the emphasis on health, not illness. Ironically and, of course, serendipitously, as you continue to feel both better and normal, you insidiously begin to forget those previous really bad days; to the degree that an occasional mildly bad day seems more annoying than it should. This is what healthy people feel like and I am glad to be here.
The new normal has now lasted long enough that it is now just plain ordinary normal. Hence, I don't really think about it. The bottom line is that I generally feel good.
Where am I now? I am between a health score of 82 and 86 depending on the day of the week (or month)and depending on the timing or certain drugs. But, as you may recall, the beauty of the eighties is the presence of motivation. I remain excited to make a checklist and fill in the boxes when the task is done.
Full disclosure prompts me to share what this normal actually is, for those that might be following in a parallel path.
What I experience now falls, at present, into two categories: Symptoms of amyloidosis and side effects of drugs. Since I have not had a serious infection or heart rejection in months, categories 3 and 4 are currently quiescent.
Amyloidosis now involves my entire GI tract and remains stable as far as I can tell. My tongue is too large for my mouth with bothers me mostly at night as it pushes against my teeth. I can neither whistle anymore nor use my tongue to clean food from between my gums and cheeks. It is very difficult to swallow solids, sticky foods or large pills. My appetite remains good and I am now overweight at 198 lbs (notice that I didn't round up to 200, well I am more round anyway). My bowels are less predictable necessitating the awareness of the proximity to the nearest water closet; nuff said. I get out of breath quickly with rapid and immediate heavy lifting, especially if bending over is involved.
Autonomic and peripheral neuropathy have caused that my feet are simultaneously numb and hypersensitive. But it is like wearing a tie, initially the tightness bothers you, but soon you get used to it. I don't really notice it during the day. I also have lost peripheral proprioception and central (inner ear) balance. I compensate purely by visual input. If I close my eyes while standing unsupported, I start to tip. This is a combined side effect of my disease and drugs, specifically, Mycophenalate (Cellcept), My fingers and lips are numb and my teeth hypersensitive to cold.
Medication side-effects include (but are not limited too) 1. A wicked bad intention tremor, (anti-rejection drugs Prograf and Myfortic/Cellcept) Eating soup or balancing peas on a fork is comical. 2. Complete loss of balance, (for two minutes), on standing after a long car ride or sitting at a desk (Cellcept/Myfortic) 3. Hypertension (Prograf) 4. Hypomagnesemia/low magnesium (Prograf) 5. Anemia/low red cell count (Septra and Valcyte) 6. Neutropenia/low white cell count (Valcyte and Revlimid) 7. Low Platelets (Revlimid and Bone marrow transplant) 8. Easy bruising (Decadron, prednisone, low platelets and aspirin) 9. Thin skin and poor healing (steroids) 10. Insomnia (generally only on Wednesdays; Decadron) 11. Hiccups (Thursdays, Decadron) 12. Fatigue (everyday, all of the above) 13. Loss of sense of humor, Saturdays from 10:00 AM to 12:30 AM (Decadron) 14. Hearing loss (I not sure why) 15. Hoarseness, worse on Wednesdays (Decadron) 16. Osteoporosis (Decadron/Prednisone) 17. Wicked bad muscle cramps at 4:00 in the morning (may be mineral or metabolic imbalance). 18. Red spots/spontaneous bleeds in upper eyelids, (Amyloidosis, hypertension and aspirin). 19. Tachycardia/Rapid heart rate and atrial bigeminy/irregular beat (due to a neurologically untethered heart. My brain and heart were never reconnected. I remain a mute scarecrow to my tinman). 20. Overuse of bad puns (that's just me, I can only blame myself).
Know that I am not complaining nor am I looking for sympathy. Most of the above symptoms either don't really bother me or I have adapted to them. The most annoying symptom is probably the tremor. Otherwise, I really don't think about them much. I get up after a typically dream filled and restful night's sleep, eat my Lucky Charms or Life cereal (apropos) and go to work. Work is still amazing and I love it. My co-workers are all fantastic people that equally want to serve others. Work is my favorite medicine with the most wonderful side-effect; memory loss of myself.
To complain on my condition would be most ungrateful. I am now planning my life up to six months ahead; I put my money where my hope is. I would be happy to stay just the way I am for years to come.


P.S. I finished posting the above and found that my light chain levels had just come back after completeing my most recent course of Revlimid. The kappa light chain level has dropped to 113 mg/l. This is the lowest level since my bone marrow transplant. That is just too cool. I thank God, and all of you.