This word I like... We architect our life...
A song, a sigh... developing words that linger...
Through fields of green, through open eyes... It's for us to see.
Interanimate: To animate or inspire mutually

Sunday, February 24, 2008

Day +46 Avoid the Bug, Getting About, The Bill

News: I added a side bar called 'Blood Counts' where I'll report the values of my 3 stem cell lines; white blood cells (WBC), red blood cells (hemoglobin HGB), and platelets (PLAT). I get these numbers twice a week and still find them a great indicator of how well my new stem cells are grafting. They are still all headed up into their respective normal ranges!

Avoid the Bug.
Yay! I survived my first real test against the bug! Somehow I did not catch the bug that made my family so miserable the week of Feb 11-17. At this time everyone is mostly back to normal. I guess all the hand washing, constant sanitizing of everything touched, and wearing a good respirator when close to people worked well. Thanx to Cathie, Dylan and Maddie for their diligence. I was a prime candidate to catch the virus since my immune system is so weak.
At tomorrow morning's semiweekly appointment I expect the doctor to start cutting back the immune suppressant (anti rejecting) drug I've been getting. I've been taking four 1 Mg capsules of Tacrolimus twice a day. They'll cut that down to 7 per day and then maybe lose 1 more capsule every week or two. Without that drug, my new immune system will be stronger against viruses, bacteria, and nematodes.

Getting About.
This last week I've noticed a marked difference in my energy level. I've spent far less time in the recliner etching a permanent pocket in the cushion with my now-little butt. I've been going for walks and short shopping trips with my Dad and Cathie. When I go to a store I will go at odd hours when few people are around. Being outside is always preferable to inside because air circulation means less chance of breathing in possible bug-containing vapors. However, I still wear my mask. I ordered 10 new masks via the internet. They are rated N95, filtering out 95% of airborne particles. I have hand sanitizer stored everywhere in the house and cars. On walks, when I have to climb small hills I am noticing that I am not as out of breath as I used to be. When I get back I don't feel like I have to plop in a chair and veg for a couple hours, or take a nap. Strength is gradually returning. As my hemoglobin rises and the effects of the January chemo wear off I'm sure I'll feel better and better. I really feel like I may actually join the living again. I cant tell you how different I feel now than the middle of January. I've been home now for exactly 4 weeks.

The Bill.
Here's the deal. If you ever need the kind of treatments I've been getting in 2008 make sure you are insured or be ready to sell your house, your car, and anything else you may have available. As much as I've griped about insurance of all types over the years, I have to take it all back. Premiums are worth every penny spent when the unthinkable happens. Your house burns down, you cause an auto accident with serious injury, you get a rare illness, etc... Over the years one tends to start thinking one is immune to disasters. It always happens to someone else. Why keep paying for all these insurance policies and getting little back? Silly me. Of course now I am a hot potato. I could never get private medical insurance again. If you try to get medical insurance for just yourself and family you have to supply your complete medical records. 3 years ago I had an unblemished medical record. One year later that changed radically. If I were to apply for private medical insurance now, because I was self employed for instance, in California ALL the insurance providers would decline to insure me. There are a few states that prohibit such 'cherry picking' applicants based upon medical history. Now, I'd have to move to a state like Massachusetts if I wanted to be self employed and medically insured.
So here is something else to thank you all for. All types of insurance are based upon those that have 'no current need' helping those who DO have a need. Some of you may never have serious medical problems yet you will always pay high insurance premiums, often paid by your employer. Your high premiums are helping those people who have been stricken, like me. We all support each other in this way. So, you have helped me out not only with your inspirational messages, but also with my medical bills. I appreciate it.
Having said all that, I still think this country needs a lot of reform to reduce medical costs for everyone. Start with limiting malpractice payouts! Malpractice insurance premiums are a huge part of the high costs of medical care today. For example, many unblemished doctors are now paying over $100,000 per year in malpractice insurance premiums. They are passing this expense on to their patients.

Sunday, February 17, 2008

Day +39 Good Progress but Everyone Sick

Good report this week.
Still no sign of the dreaded post-transplant complication known as Graft Versus Host Disease (GVHD). All internal functions appear to be normalizing. There is a blood test panel called 'blood chemistry' that reports on various levels of enzymes related to functioning of the liver, kidney and pancreas. I get this test every time I get the regular 'Complete Blood Count' (CBC). Some of the fluctuations of enzymes levels on the Chem test have made me nervous at times, but the numbers appear to have settled into the normal range over the last couple weeks. I think the doctors keep eagle eyes on these numbers. If they were worried at any time they didnt really share their concerns with me, so I took it on myself to worry for all of us. Tummy organs seem fine now so my worry is disappearing. This old body is really trying to get back to normal after January's chemo assault.

My CBC counts improve or remain stable.

Feb 07Feb 11Feb 14
WBC: 4.5-11.0)
Hgb: 14-18)
Plt:525989(normal 130-400)

The nurses say it will take months to get these counts into the normal ranges.

After reviewing the meds I'm taking, the doctors are starting to scale some back. Next week I'll probably start scaling back on the drug that suppresses my immune system, Tacrilimas. They give xplant patients this kind of drug to prevent the new white blood 'T' cells from attacking organs in the body. Over a period of 2-4 months they scale back the drug and observe the consequences. If GVHD does not develop then they continue scaling back until the drug is not needed. However, while the drug may be a great thing to prevent your new cells from bullying up your organs, it also means that they are more likely to give legitimate germs and viruses they encounter - a free pass. Thats why the battle at this point post-transplant is like walking a tight rope. On one side, GVHD, on the other; opportunistic infections.
That brings me to my last piece of topical news worthiness. Everyone here at home, except for the dogs and I, have had medium/bad colds this last week. Another tight rope to walk. If I were to pick up a cold virus it could become a serious issue. To combat the threat I have taken extreme counter measures. It may not sound like much, but I wash and sanitize my hands even more frequently than I used to, and I wear a N95 rated respiration mask inside the house. The family has tried their best to reduce close contact with me and to employ their own regimen of extreme hygiene. So far, so good. Knock on wood. Everyone is getting better now.

Thank You!
On Valentines day, I received 68 valentines day cards from the Penasquitos Lutheran Sunday school class of 5th and 6th graders. These are the same kids that created the Get Well artwork we taped on my inspiration wall in my hospital room last month. I posted a picture of that wall a couple posts ago. Every one of the cards was very uplifting for me and the family. These are terrific kids. Some of them shared their philosophy and poetry. All of them shared hope for the future of my family and I. Some of the simplest, yet most useful and poignant perspectives can come from those of us with the least experiences in life, our kids.

"Always do what you are afraid to do." - Sarah
Sarah, the only thing I'd add to this is "... if doing it will make you stronger."

"A friend is dawn at the beginning of your day." - Lisa

There was a nutritional warning from Shakura. "...if you eat fruits and vegis it can lower the risk of cancer and if you drink wine, beer or any other alcoholic drinks you can get it." Shakura should know that alcohol is off limits to me now. Hopefully my 3-4 beers per week pre-transplant had nothing to do with my illness.

JR, who's father has been through an experience similar to what I am going through now. And he is doing great!

"Roses are Red, Violets are Blue, I see a happy future, for Jim & Cathie too." - Calico

Thanx Sarah, Lisa, Calico, Shakura, JR, and all the rest of the class. And special thanx to teacher Adriana! I love you guys. You give me strength!

And thanx to everyone who have sent their inspirational thoughts and messages to me in other ways! I cherish them!

Saturday, February 9, 2008

Day +30 Phase 1 complete

The fun never stops.
First of all it's Feb 9 not Feb 8 at the time of this posting but I wanted to post on day 30 cuz it is an important statistical milestone. Making it to day 30 is kinda like reaching an important way station on the way to the the top of Mt. Everest. Unlike an Everest climb, there is no option of turning back. So, horay! I'm going for the top!

This last week was interesting.

Errata: Lost my Star Patient designation.
On last Monday's appointment my blood counts showed similarities to my counts 5 days Wednesday previous, maybe slighty better. The blood test in-between Wed and Mon, on Friday the 1st, showed 'incredible' improvement from the Wed tests. My last post talked about the great Feb 1st results. The doctor called me his star patient. So on Monday after viewing the newest test results the doctor informs me that the Friday blood test must be 'in error'. But, not to worry, my current blood counts were still very good. I guess I officially lose my 'star patient' designation now and go back to just a good patient. I wonder how a blood test can be in error? The numbers were not unreasonable enough on Friday to be challenged by the doctors. It's ok.

GVHD or stupidity?
I was due to see the doctor again last Thurs, Feb 7. However, on Tues morning, I noticed a burning feeling on the bottom of my right foot. Visually there appeared to be a few rashes in the areas located on the thickest skin part of my foot. I was wondering if this was a GVHD symptom cuz the docs always check my feet for rashes, so I phone in and they had me come in Wed morn. The diagnosis was that the rash was caused by yours truly taking a .6 mile walk Monday afternoon around the neighborhood... in his bedroom slippers with no socks. It was thus a 'local irritation' and not the a symtom of GVHD. Whew! What fun! Obviously I am now aware of how sensitive my skin is and have been wearing xtraining shoes with sox.

"Marrow Checked"
This is just one of those subtle things that are said sometimes by doctors that can show how removed they can be from their patients sensitivities. It's no big deal but I brought it to his attention at the time in a joking way. On Monday during the doctor's typical brief visit to my room to discuss the blood test, look for rashes, listen to my lungs and generally poke around, he spoke to the nurse about future plans. He said that I was due to have my "marrow checked" at 30 days and that it should be scheduled on Thursday. As soon as he said that I piped up and said something like, "oh, is that where a doctor uses a needle the size of Norway and a cork screw to bore into the bone to collect marrow?" Without a pause he replied, "sort of, but we are still 'checking' the marrow." The implication was that 'checking the marrow' was an accurate description of the procedure. Very true, I agreed. I was just acting up. I've had 4 of these procedures now so I asked him to forgive my sensitivity to a casual mention of the procedure. There probably is no good way a doctor can tell you that you need to lay down through another painful 15 minute procedure. Thats all it is to me. It is still hard to sit because of the residual pain in my tail bone. I wonder if they try to reuse the hole from the previous procedure? After the biopsy, which lasts only 15 minutes amid much pillow clutching and gnashing of teeth (on my part), I treated myself to a surrealistic scene by observing the lab techs sorting through my marrow for the best pieces to put onto each of 10 slides they had to prepare. "Oh, now there is a nice juicy chunk", I would think to myself.
Aight, nuf of dat. The reason for a bmb at this point is so the doctors can actually get a ratio of donor stem cells versus my old stem cells in the marrow. They would like to see 100% donor stem cells and 0% my cells of course. I will get more biopsies in the future, next one close to day 100.

General update
I'm still progressing well. No signs yet of GVHD in any of it's usual incarnations. Appetite is good but nothing really tastes good. If I could just smell the food I'd be happy cuz my olfactory senses are as good or better than before chemo. As soon as the food gets to the tongue it like a "what the heck is this" signal goes to the brain. Smell and tastes are not in sync, brain is confused. They say you get back tastes after a few months. Drinking lots of water per directions, gotta keep flushing the the tummy organs. I'm sleeping better. I'm trying to take half mile walks at least once per day. Some energy is kind of returning. I can turn on the computer and look at all the icons and words without it seeming like an enormous task to comprehend.
Family is terrific. Dad stays with me Mon-Wed and Cathie takes over Thu-Fri driving me to appointments, shopping for me, reminding me about pill times. Cathie is always cleaning and wiping surfaces to reduce microbes and fungi. I'm like bubble boy without the bubble. I still get lots of inspiration from all of you too, so thank you!

Friday, February 1, 2008

Day +23 Settled and exhausted

It's been 5 days since returning home and I havent even turned on my computer from Sunday for my last post until now. Mental energy has not been what I had hoped since chemo. I have short spans of mental energy and try to make the most of it. I suppose it's like physical energy. Little of that too. My docs say the best way to get energy back is to burn some up now. Take a walk, read a paper. My walks max out around 100 yards before I'm ready to fall back into my recliner and watch another mind-numbing episode of presidential debates. That is soon followed by nausea so I flip channels to find an episode of Family Guy, much easier to get past the brain neurons that filter BS. Anyway, that is meant as an apology of sorts for not posting sooner. There continues to be terrific news.

First of all I'd like to tell you that the Scripps blood lab was able to isolate one of my new red blood cells on a slide and take a picture. You should be able to see that on the right. This happy little guy is one of MANY! You see, last Sunday my Hemoglobin (a type of red blood cell) was around 9.0. Normal range for Hgb is 13.9 - 16.0. This morning my Hgb was 12.3. This is a higher number than I've had for Hgb in over 2 years. We, including my doctors, are flabbergasted at the rapid expansion of this important stem cell line. The good news doesnt end there. My white blood cells, without the assistance of Neupogen have reached 4.5, the bottom of the normal WBC range! My stem cells have not ignored their third responsibility, platelets. My platelets have gone from 32 to 79 the last 5 days. 110 is bottom of the normal range. The doctors say this is truly unusual rapid progress on myeloid cell growth following a stem cell transplant. Add to this the fact that the doctors have found NO evidence yet (cross fingers) of Graft vs Host Disease (GVHD), including rashes, fevers and more, makes me a very happy, but exhausted, camper.

A word about GVHD. Usually there are unforeseen differences in even a 'exact' stem cell match that will result in a certain type of the new white blood cells (the graft) having 'issues' with one or more organs in the body (the host). It is a common problem for people who get new stem cells from unrelated donors. You would not have this problem at all if your donor was an identical twin sibling.

Anyway, the longer I go without GVHD symptoms, the more is looks like I lucked out and received a better than 'exact' match. Maybe my donor is my clone! I hope I didnt jinx anything by speaking like this. There is still a long road ahead where GVHD is concerned. But next Friday will be day +30, a milestone to celebrate.

Being at home is proving to be easier for my family, less travel and hanging out in the hosp room. Cathie puts together all my pills twice a day. There is a pill for everything, some huge, some tiny, some shiny, some dull. But they all serve to let me continue my recovery at home instead of in the hospital continuously hooked up to the chemo tree and pumps. Cathie helps be in countless ways every day, even the days she goes off to work or works here. She is bringing my smile back. My Dad suffered the loss of his only sister, Peg, today. She was 85 years young and her kidney gave out. She passed on at her home in East Hartford Conn. I had last visited here there with my Dad in the summer of 2000. She will be missed. Dad is taking the loss stoically like he has through so many adversities in his life.

Lastly, I'd like to show you 'Inspiration Wall' at my old hospital room. This wall is in front of my bed. The drawings on the left side were done by a class of 6th graders at PQ Lutheran Church. Very artistic group! On the right side are all of the cards we had received up until last weekend. This wall helped me keep going! You should be able to click on a picture to see a larger size.

Thank You all for your support and inspiration!