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

Friday, March 28, 2008

Day +82 Donor card

Today is a light transplant news day because this week my appointments move to Tuesdays and Fridays. My next appointment is tomorrow. Once again, my health this past week has been good!

Thursday I learned that, in May, my appointments will move to the clinic much closer to my home. That is where I saw my oncologist doctor and where I went for my frequent blood transfusions during 2006 and 2007. My doctor is one of the 3 transplant specialists who run the transplant unit at Scripps Green hospital in Torrey Pines.

Also on Thursday, I received a card from my Donor via the organization that represents him, the National Marrow Donor Program (NMDP). I am really happy to get his card. You might remember that I had sent him a letter a couple weeks ago to update him on the status of his donated stem cells. I told him that they are making like bunnies and now are well on their way to totally repopulating their new home. I first gave the letter to my nurse. She edited it and passed it on to the NMDP. After censoring it they would have passed it on to the donor.
At my appointment Thursday I was shown the card's face from a distance by the head nurse who felt she could not give me the actual card because 3 words had been blocked out with a black sharpie by an censor at the NMDP. She was afraid that I would be able to see through the black ink and read the 3 words. So she had photocopied the card and gave me the copy, thus eliminating the see-through possibility. Both the NMDP and the hospital collaborate to ensure that the donor and recipient do not learn each other's identity. Each organization only knows the identify of their own client. I totally understand the need for the secrecy given the circumstances. But it's still fun to make fun. The donor's sentence that caused the censorship was this.

"The anonymity part of this seems so impersonal so I will assign us names of Recipient (censored) and Donor (censored)."

And it was signed:

"Donor (censored)"

It is a very nice card. He is glad things are going well for me. The 3 censored areas that were blacked out were very narrow so it looks like the donor was simply trying to give us short fake names other than Donor and Recipient. Kind of funny, eh? A little research shows that the word Donor is also a proper surname. There are at least 76 people with a last name of 'Donor' who live in California. So hey, maybe my guy is one of them? I guess the NMDP really has no way of knowing whether Donor is really trying to communicate a real name to me via a fake 'fake' name. Kinda funny eh? I'm going to alert Donor to the censorship of his assigned names and propose that we put off sharing any names other than Donor and Recipient until after January 9, 2009. That is when the NMDP relaxes their donor-recipient communication rules.

Monday, March 24, 2008

Day +75 Xplant Just in Time, Go Reds & Big Red

Go Reds!
Only positive changes to report this last week. My hemoglobin counts are ticking upwards instead of in wild fluctuations. It's up to 12.1 today which is approx 86% of the lower end of the normal range and 81% of my last normal reading in a 1999 blood test. It was 6 years after 1999 that I got my next blood test and got the Myelodysplastic Syndrome (MDS) diagnosis. My hemoglobin at that time was 6.1 and I was very, very tired.
Last December my white blood cell and platelet counts were in the normal range and the Hgb count was terrible. At this time I've have the reverse problem. Hgb is gaining but the WBCs are stuck in the mud. Today my doctor told me not to worry about the WBCs in the mud. He said the white cells are the hardest cell line for the stem cells to get re-established. So, apparently they will rise more slowly that the other 2 cell lines and I'll just have to keep avoiding opportunistic infections. I can deal with doing that; compared to where I could be right now. In 25 days I will reach another milestone, passing the 'Acute GVHD' stage. The word Acute in medical lingo refers to "coming speedily to a crisis". The upcoming phase 3 of the transplant experience is known as the 'Chronic GVHD' phase. Chronic in medical lingo refers to symptoms that "progresses slowly". If you had to choose acute or chronic, chronic is definitely the way to go. It's beginning to look like I'll pass the Acute GVHD phase without a hiccup! That's me talking not the doctors. They will NOT venture a sentiment such as that at this time because they've seen it all. But I cant resist thinking that going this long without the slightest sign of GVHD must be a good thing. My end of phase 2, 100 day milestone celebration will be tempered by having to get another bone marrow biopsy.
I want to mention that I'm on a clinical trial with a new drug meant to prevent the establishment of a normally dormant virus called Cytomegalovirus. The drug is called Maribavir. There is actually a 33% chance I'm taking a placebo instead of the study drug. But so far I havent contracted CMV from my donor who tested positive, so maybe the drug is working. Around 70% of everyone carries CMV. With a compromised immune system CMV can cause all kinds of bad things to happen. Normal immune systems keep CMV in a mostly dormant state. I have around 4 weeks left on the Maribavir trial.

Xplant Just in Time
I was looking at my bone marrow report from Feb 7 and just noticed it talked about my previous bone marrow biopsy from December 21, 2007. What I just learned is that the December test results placed me in a different categorization of MDS. My MDS categorization prior to December was RCMD which basically means that all 3 of my stem cell lines were messed up. The December report, of which I now have a copy, states that I am now re-categorized as CMML. This stands for Chronic Myelomonocytic Leukemia. The reason for this change is that my old stem cells were starting to crank out too many Monocytes, a behavior indicative of Leukemia. CMML is more serious than the RCMD classification. For me it meant that my MDS was evolving to dangerous forms. Acute Myeloid Leukemia (AML) may not have been far off on my horizon. The good news is that my old MDS classification doesnt matter anymore. My Feb 7 bone marrow biopsy report says "...there are no morphologic indications of persistent CMML." As a matter of fact there are no indications of MDS at all!

So what does one do when one is confined to ones house for days at a time? Well, this one counts his blessings. Highest amongst them is my appreciation for all the prayers, support, and inspirations from all of you. I totally credit my ability to survive the horrendous month in the hospital to your help, starting with the wonderful hands-on help from Cathie, Grandpa, Grandma, Maddie and Dylan. We are all one family when we care about each other and take the time to reach out. This experience has been and continues to be a lesson for me in how powerful we can be when we direct our inspirations and love towards others.
What else does one do when house-ridden? Well, last weekend there was a lot of watching the NCAA basketball playoffs. This is especially exciting when ones wife attended UW Madison, where the Badgers (Big Red) play. They are in the sweet sixteen! We also had a good run here in San Diego with the mens and womens teams from University of San Diego. The mens team lost in the 2nd round. Other than the above I spend my time reading, walking (with mask), and puttering. My pre-transplant levels of energy are still illusive but I understand the energy will eventually return. And I mean return all the way to my pre-MDS days!

Monday, March 17, 2008

Day +68 Forward to the Past

Parker and Mom back at home now. Whew!
Parker, like me last month, had too much bilirubin, had to stay hospitalized for a few days. Excess bilirubin in newborns is called Jaundice. In adults it can lead to renal falure. Fortunately, the bilirubin has worked itself out for both of us. But we're not out of the woods yet. Parker is a week old and I'm 68 days old. Things are still getting straightened out inside. Organs are aligning, brain is booting up, lungs getting tested. Parker's journey was much, much more traumatic than mine. I feel for him. He went from the perfect environment; not a care in the world, occasionally feeling a little curious about various things floating by and the source of the brightness that sometimes entered his space, to unbearable pain, unwanted movement, and the cold; the bright lights and reaching hands. Ugh. Parker was transplanted to a different world. I just got a minor overhaul. Went in for my 100K mile servicing and it turned out I needed a new transmission. Same world for me. My journey was more nauseous than it was painful. And I knew what all the reaching hands were; nurses and doctors. Parker wouldnt have known. It must have been a nightmare for him. The awful nightmare of birth would have lasted right up until the second he looked into his mother's eyes. Then, it was love at first sight.
Parker is my transplant buddy cuz of his problem with bilirubin. However, Samuel, who I havent heard as much about, is also my bud. They are my new grand-nephews born last week and I welcome them to the world. They both have the greatest moms and I am very excited for their future.


My weekly summary is... Great! Blood counts posted on website. White cell count dipped but is not in the danger range. More on that later. However, I need to be even more reclusive for the time being. Hemoglobin count breaks a record! 11.7!

Today at my Monday checkup I learned a little more about some of the pills I am taking. One of them will be reduced again on Thursday. They come in 1 Mg capsules so that the doctor can prescribe several to start and then scale back by reducing the number. I started Tacrolimus with 8 capsules and have been at 6 now for a couple weeks. Tacrolimus suppresses the new immune cells from beating up on foreign things they find in the body; like lungs, skin, liver. Over 2-4 months, the new immune cells settle down and stop being such bullys. Somehow, they learn to recognize important organs as 'friendly'. The Tacrolimus drug is scaled back accordingly. Since I have been on the 6 pill-a-day regimen there have been no signs of my immune cells attacking the usual suspect, so they will scale the Tacrolimus back to 4 or 5 pills on Thursday. Another drug I'm taking, Ursodial, is due to be discontinued on day 90, around 3 weeks hence.

Regarding my dipping white blood cell count. The doctor said it is probably due to the antibiotic I'm taking, Septra. Evidently this suppresses more than nasty bacteria, it also aint good for neutrophils. Kind of a 2 edged sword. I guess the danger of bacteria infection is greater than that of virus. The bacteria the doctors are particularly worried about is Pneumocystis carinii pneumonia (PCP).
In light of my lower white counts I have decided to not tempt fate. I'm going to really avoid public areas more than I have. And when I'm outside on walks I will wear an N95 grade face mask again. I dont want to get sick. Any infection I get at this point will be very serious and probably put me back in the hospital. My white count actually rose 20% from last Thursday, so hopefully the count has dipped as low as it is going to go.

If feels good to be able to say, "I'm the guy who formerly had Myelodysplastic Syndrome but was cured!" Now all I have to do is literally keep my nose clean for the next few months.

Monday, March 10, 2008

Day +60 Socal Slides, WBC slips, Babies

Greetings from still-green Southern California.
To follow up on my post from last week, I've included a short slide show. It has 5 pictures taken last week covering the Borrego desert, 60 miles to the East, all the way to the coast near my home.

If you are reading an Email version of this post you may not see the slide show and will have to view it from the blog page. The slide displays are very small renditions of the actual pictures. The pictures are actually 4 to 5 Meg each in size, rich in detail and colors. To view the full pictures you can click on the picture a couple times and it will download the original version which will be much larger than your monitor can probably display unless you are using some humongous HDTV. The purpose of the slide show is to let you see how beautiful Socal can be this time of year as well as give you an appreciation for the diversity of environments we have here. Both San Diego and Borrego are located in desert climates and the response to spring rains is very similar, they put out grass and flowers like crazy for a very short period of time. The first 3 pictures were taken Wednesday morning in Borrego. The desert floor is covered with grass and blooming flowers. Picture 4 was taken in the foothills of the Laguna Mountains a couple miles south of Santa Ysabel. Picture 5 was taken at the spot near my home that prompted my 'rolling green hills' comments last week. If you can click through to download the full version of these pictures I think you will appreciate them.

As for me, things are very similar to last week. My white cell count is down a little but the doctors say there is no cause for concern other than to be extra vigilant at this time with my anti-infection precautions. My other blood counts are stable. My energy level continues to increase. I was able to enjoy a nice car ride out to the desert with my Dad last Wednesday. We walked around the desert just long enough to get some pictures and enjoy the famous desert quiet. On the way there we stopped in at Santa Ysabel's Duddly's bakery and bought a loaf of their awesome potato bread. Today Dad and I took a long walk in the neighborhood. Afterwards I was pretty tired. Sometimes it is frustrating to realize that my recovery will take 3-6 months. I wish I could spring back more quickly and rejoin life. However, at this point I still need to review my blessings and many inspirations. I still frequent transplant blogs and forums so I know how quickly things can go wrong after a transplant.
I continue to appreciate the support and inspirations from you, my 11 readers. In the last few days two of my readers, who are also niece-in-laws, have had baby boys, each their first baby. Congratulations to Shelli, baby Parker, and Cassie, baby Samuel! Life begins new for the babies and a different kind of life now begins for the new Moms.

Monday, March 3, 2008

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