Day +54 Tac Reduced, 100% Green, Donor Thanx

Doing very well thanx!
I've had 3 doctor appointments since my last post. I've updated the blood counts on the right panel of my blog page. Numbers are good. Although it is clear they are fluctuating, the trend for all 3 counts are upwards.

Last week my doctors decided that I could start reducing the immune suppressant drug called Tacrolimus. I'm taking 25% less of it now. This means I get to take 2 less of the pesky little capsules, I'm down to 6 of these now. Actually they are the easiest to take because of the small size and the fact they dont start dissolving in the mouth immediately. The biggest pill I'd like to jettison is the Potassium pill. It is much larger than needed, in my opinion. There are a couple of foul tasting pills that flake apart in the mouth almost immediately. I have to get these down as quickly as possible. Slowly the pills will be eliminated from my treatment.

Another significant development in my little medical saga occurred today when my doctor finally got back the most time-consuming test on my bone marrow biopsy of 25 days ago. The test indicates what percentage of my marrow stem cells are derived from my old stem cells and what percent are of donor origin. The results of my test are... 100% donor origin! Yay! The doc said this is why they put me through 'full chemo conditioning'. If they had done a reduced-intensity, or mini transplant, then my own stem cells would still be in there competing for resources. And, as I found out the hard way, faulty stem cells have an advantage over normal stem cells and will eventually win the resources battle. So, taking the full prep chemo route to transplant was so veerrrryyy not fun, but the decision is now paying off. My old faulty stem cells are totally gone and the donor cells have become my own. My new cells are now cranking out normal baby cells just like the stem cells of most every other mammal on the planet.

Today in San Diego was a day without clouds. On our walk, my Dad and I visited a hilltop a mile away from my house. The hill is really a huge flat, graded 20 acre pad in the high foothills of Black Mountain. The pad will someday provide the equal but opposite force needed to keep future parks, homes, and businesses, that will be resting on it from crashing to the center of the earth as a result of Earth's gravity. The open-hills view to the North towards Palomar mountain was remarkable. This is the truly the time of year in San Diego that touches the hearts of people who grew up in the Midwest. Everything is green. Think 'The hills are alive with the sound of music'. For a few short weeks green dominates the landscape. Green rolling hills. Maybe I've been looking at the Windows XP default screen background too long, but it's invigorating to me to see because the green surrenders to brown for the entire rest of the year. By May we will have brown and mauve rolling hills of dry sage, tumbleweeds, deer brush, and laurel sumac. Enjoy the green now while it's here. Get outside, go hiking, chew on a blade of grass.

Last week I wrote my donor a thank you and update. This is kind of interesting. The organization that manages the donor/recipient relationship is called the National Marrow Donor Program (NMDP). The donor's real name and address is only known to the NMDP. Once the donor donates their stem cells I am pretty sure there is no mechanism in place for the donor to know what became of his/her donation. The donor and recipient are allowed to write each other indirectly. Any communication is read, screened and edited by the NMDP. So I had to address my one page printed letter to 'Dear Donor'. I had to sign the paper with 'Recipient'. There must be no identifying personal data in the letter. That is, the donor may not know my name, address or even what city I live in. I guess the NMDP is trying to protect the donor from vindictive members of the recipients family and/or lawyers should things not go well. After one year the NMDP will allow the donor and recipient to communicate directly if both parties approve. For the time being I am known as 'Your Grateful Recipient'. In the letter, I summarized the excitement we had on day zero when we got his cells and how well since then his cells have apparently grafted in my marrow. I thanked him profusely and was sure to point out that however things go for me from here on, his generosity has made many people very happy, especially me and my family. I'm going to continue to update the donor every month as long as I have good things to report. I'm going to be tactful and not report to him any issues I may develop with GVHD in the future. I would not want him to feel responsible.

Your Grateful Blogger

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.

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 07	Feb 11	Feb 14
WBC:	2.3	2.5	2.3	(normal 4.5-11.0)
Hgb:	10.2	10.0	10.5	(normal 14-18)
Plt:	52	59	89	(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!

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!

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!
Jim

Day +18 Back Home

I got my doctor to let me start commuting today. I left my room and was driven home around 1pm. As an outpatient now I will be better able to thrive and heal. Even with all the drugs close by and the skilled nurses a buttons press away, nothing beats rapid healing like being in ones own home.
I didnt know what an emotional experience it would be to leave there, that little room on the third floor overlooking the golf course and the ocean. The view was an inspiration in itself. The blue sky, the ocean, the trees, the greens; all calling on me to get better and come back and gain strength. When I walked with my family beyond the door of the BMT unit where I occasionally walked for exercise the last 26 days, I choked up. No one we passed through the lobby on the way to the front door could see my tears because I had my beanie cap and mask on. My eyes delivered a surrealistic scene through that short walk. I shouldnt be leaving my unit, I wasnt supposed to be this far away passing so close to healthy people. Cathie held my hand and I concentrated on that instead of my fears. Maddie walked behind me waiting for me to fall. I didnt. Dylan was in the van immediately outside waiting for us. When I stepped outside it took my breath away; the clear blue sky, the fresh air from the rain. It was life in my face and it filled me with a whole set of emotions quite different than those only a half minute before. I was thankful and grateful to everyone who helped me get this far. Outside, in one piece, breathing Gods fresh air and sporting a new set of working stem cells. I feel oddly not exactly who I was when I came in on the 1st. I feel like a new person with a new identity, yet physically weak and frail.
I've walked a little bent over today. Maybe cuz of the little hospital bed I had to mold into for 4 weeks. I feel shorter than 6'1" but I'm not. I feel like I'm 187 lbs now which I am, having lost approx 15 lbs in 4 weeks under the Busulfex/Cytotoxin diet plan. No exercise required in that plan. Now I can dredge up my old genes (no pun) that I squirreled away in my closet the last 15 years for the day when I lost some weight.
Driving home along the coast next to the beach and big waves was exhilarating. It seemed to take forever to complete the 15 minute ride home. Seeing my street and entering my house was cause for more tears. I still cant believe I'm home. I'm able to eat better than at the hospital. I'll be able to get motivated to ratchet up the exercise now. I can take short walks on my street. Cathie, Maddie, Dylan and my wonderful Dad will be my caregivers for the next 3 months.
Sense of smell changed drastically, heightened. The house smells different. I swear I can smell individual pieces of furniture in the house. Not bad smells, just a mishmash of smells from normal things. Tastes have been deadened and a little changed to boot. Gonna have to find foods that taste good. I'll eat better. This was not really an option at the hospital. But no fresh fruits, salads and a bunch of other items I love. Cooked food, no leftovers. It'll be a couple months like this. Taste is supposed to return in 4-6 months.
My counts continue to rise. It looks like I may not need any more RBC transfusions. Platelets are just now beginning to show some production. I'm going back tomorrow morning for another round of blood test and evaluation. After that I will get either 2 or 3 appts per week to come back for that routine.
Love you all!

Day +16

More positive news today. My WBCs have come up to 3.0. A WBC count of 3.0 or above is one of the qualifying factors for being discharged as an outpatient. 2 of the other factors I know about are that you have to be eating and you have to be able to swallow pills. I'm a 'go' on these things too. There was another very pleasant surprise on my blood count sheet. The past 10 days have seen me get at least 1 unit of donor blood. My hemoglobin (Hgb) levels kept diving. I learned that this is typical. I dont know why this happens because red blood cells (RBCs) are supposed to live for around 15 weeks. It could be that the RBCs I had during chemo came to an early death due to the chemo. One day my Hgb was at 6.8. This made me very tired. Yesterday I didnt need a transfusion because my Hgb was 8.6. I thought no big deal. Today my Hgb was 8.8! I'm really stoked about this cuz the main symptom for my MDS over the last 2 years was low RBC/Hgb levels. By last summer, my marrow stem cells had become incapable of producing red blood cells. Suddenly I am now looking at increasing numbers of RBCs/Hgb! This stem cell transplant thing really works!
When I am discharged as an outpatient within the next 3 days, phase 1 of the transplant will be complete. When each of the 3 phases is complete I can 'erase' the poor outcomes statistically associated with that phase. At least thats the way I look at it. A little more peace of mind every new phase. Phase 2 will end on day +100. Phase 3 ends on day +365.
Cathie and Dad hung with me today. I love them very much for their daily onsite support and ability to sit with me for hours without getting bored. On top of everything else in his life, Dad's only sister who lives in Connecticut now has serious medical problems. I pray for aunt Peg's health to improve.
Cathie has been preparing our home for my special needs. The carpets have been cleaned and everything bleached down. I guess we'll all have to learn to improve our hygiene habits for a few months until my immune system has been rebuilt. Everything takes time. Sigh.
As I've drifted through these last 3 weeks in various states of nausea, pain, and mental fogs, I've kept my thoughts focused on the people who were inspiring me to succeed. All of you. Each of your inspirations has been unique and came from your heart. I am convinced that much of the success I've had so far in my journey is due to your spoken, written, and even silently sent messages. I have felt many messages of good will and positive energy from you. This is all I've hoped for. So again, I thank your from the bottom of my heart and the deepest recesses of my newly populated marrow, for your hope; for your inspirations and support.