MDS, A Bump in Life's Road

Vincent passed away today at Stanford hospital. On Tuesday, he was admitted to the hospital with severe edema of the legs, and several other symptoms. Things took a sharp turn for the worse on Thursday night, and he was moved to the ICU. The doctors believe he had a severe case of Host-vs-Graft disease, which had dropped his blood counts to severely low levels, and allowed an internal infection to attack his body. There was essentially no chance of a full recovery. On Saturday, following his wishes, with his family by his side, he was removed from life support systems, and passed away peacefully. Information about the memorial and donations is available at busam.com.

Myelodysplastic Syndrome
A Bump In Life's Road

This web page (sort of like a blog) is a record of my encounter with MDS (Myelodysplastic Syndrome). Mostly written for myself, I'm sharing it with friends and family. Enjoy, but please do not post a link to this page anywhere on the web as I want to keep this page private without resorting to password protection. If you click on any of the pictures on this page, you will see a large version of the picture.

The entries are in reverse chronological order, so if this is your first visit, consider starting at the bottom and working your way up. Newer pages often assume you have read the previously written entries.

BTW: You can click on any of the pictures below to see a much larger version of the photo. Depending on your browser and its settings you may need to click on the Back button to return to this page.

Today's entry will be a little different. A couple of people have asked for more detail on how I'm feeling and what is going on, so I'll give a reasonable summary.

Overall, I'm feeling even better this week, at least mentally. I'm taking fewer naps and in bed less at night. Physically I think this eight months of restricted activity has taken a big toll on my muscles. It takes me quite a while to summon enough energy to do anything except the simplest tasks. However, I'm back to doing small projects on the computer which shows that mentally I'm improving despite still being on Prograf, Vfend, Prednisone, Valcyte, and other more minor drugs.

There are several problems that need to be cured before I see much more progress being made. Probably the most annoying is the dry mouth. It keeps me from going out to eat. At home I'm eating very moist dishes where the meat/fish is shredded into small pieces and in soup or Ramen. I also want to keep my mouth closed all the time so conversation is limited. This does seem to be improving slowly; it is better than it was two weeks ago. My next most annoying problem is swollen feet, ankles, and calves; the Lasix doesn't seem to be helping. I am unsteady on my feet and frequently lightheaded. When I take my almost daily 1 1/2 mile walk, I use a walking stick and it now takes me 50 to 55 minutes whereas in early August I was doing it in just under 30 minutes. The last annoyance is the "diarrhea" which, while less frequent, refuses to go away. I also frequently have blurry vision, a common side affect of the drugs. Thank heaven my hiccups disappeared a week ago last Monday as mysteriously as they appeared. Also during the last few weeks my troublesome left sinus may have been cured; I'm not claiming victory yet but the signs are good.

The information from the doctors is that the pathology tests show that I probably don't have CMV which is good. They are now suspecting GVH of the gut which had been my guess. My Kaiser doctor said that their pathologists don't see that much GVH so my slides have been sent to Stanford for examination there. My red and white blood cell counts are holding despite all the drugs. I have received several platelet transfusions in the last couple of weeks and expect more, perhaps as soon as Monday.

Well, there's the summary. I feel like my roller coaster is on an upward slope. Let's hope it keeps going that way! We're looking forward to a visit from Vincent, Jonalyn, and grandson Devin early next week. When they visited us a couple of weeks ago, I was feeling pretty bad. I'm looking forward to being a better host this time.

I think I've reached a local low point and am beginning to feel some signs of recovery - very little yet but still hopeful. Unfortunately the price is high.

On Monday I saw Dr. Arai at Stanford and she diagnosed a good case of GVH of the skin and either CMV (cytomegalovirus) or GVH of the intestine. She upped my Prednisone from 5mg/day to 80mg/day and put me back on Prograf at 1.5 mg/day. These are both immunosuppressants so it once again delays my being able to do the activities (and others) listed in my entry of 8/18. I was also very low on platelets and got a transfusion.

Thursday I got another bag of platelets before the colonoscopy and two bags of red on Friday.

Friday I got word that based on my clinical symptoms and the visual results of the colonoscopy, I probably have CMV. A pathology test is needed to confirm this tentative diagnosis. As a preventative measure I'm now on 1800 mg/day of Valcyte (which lowers blood counts). So with my blood counts already low, I see lots of transfusions on the horizon.

This latest round of problems increases the chances that GVH, and probably also CMV, could be long-term problems - perhaps even lifetime. The good news is they say they know how to get them under control within a couple of weeks.

Overall the news this week is mixed. We'll have to wait and see what the future brings.

I think I can report that I'm a little better this week. The diarrhea is manageable although the hiccups haven't improved and are interfering with my sleep. This coming Monday I see my Stanford doctor and on Thursday I get platelets and a colonoscopy and an esophagogastroduodenoscopy.

Another problem that I've had the last several week is dry mouth. It is inconvenient in two major ways. First, I can't carry on a conversation without taking a sip of water every two or three sentences which is very annoying. It is much more comfortable to keep my mouth shut than talk. Second, eating anything dry, such as some bread or chicken, is a major chore getting it chewed and requiring liquid to wash it down.

I've know for some time that this would be a roller coaster ride. But like a real roller coaster, I was expecting the intensity of the downs to diminish towards the end of the ride. I'm still waiting to reach this point in the ride.

I wish I had some good news to report this week but I don't. We cancelled our trip to LA and Phoenix because I didn't feel good enough to travel. Fortunately, Vincent and Jonalyn both have some work they can do in our area this coming week so they are flying up on Monday evening and staying thru Thursday evening. I'm sure that seeing them and Devin will perk me up some.

Lately I've been totally listless - no concentration or physical or mental energy. Sort of like when I have a bad flu, except no head congestion. Last Friday evening diarrhea was added to my list of maladies. It is probably either because of the drugs or (hopefully not) GVH. I saw my Kaiser doctor Monday morning and he had a bunch of tests done that all came out negative. The diarrhea may finally be going away but if it doesn't , it looks like I'm in for a colonoscopy next week.

As if this isn't enough, I started getting frequent hiccups midweek. One source I read said this can be caused by disorders of the esophagus. In 2001, I was diagnosed with a problem where the esophagus meets the stomach and have been taking pills for it ever since. Last night I woke up three times with hiccups. Finally I got up and did some research (yes, Google works at 3:30AM). I found this "remedy" which has worked for me:

Since the last week of August, I haven't felt that well and this last week had a couple of very bad days. I'm definitely ready for my health to improve.

I saw Dr. Arai at Stanford on Monday; my first doctor's visit in four weeks. I gave her a list of 10 symptoms from over the last month, the most serious of which may be a series of low-grade temperatures and intestine problems which made all food undesirable. In addition, all of my blood counts were down. She wanted me to get some red blood and on Friday I got three units at Kaiser. During the meeting she volunteered that "perhaps we underestimated how compromised you immune system is." Instead of getting off prednisone this last week, I'll be continuing it and can foresee increased levels. Dang. In a phone conversation mid-week, she said that I've been on prednisone so long that it may take a while to get off it. I could really use some good news - and the sooner the better.

Our plans have been to head to LA and Phoenix for the next 10 days or so to visit our family. Unless I have a quick recovery, we'll have to postpone that trip.

While I have mentioned Jennifer a number of times in passing, I have put off a detailed description of her contributions to my treatment and recovery because I felt her efforts deserved the spotlight and not just passing references. In essence, for many critical months she was 100% responsible for my daily activities. Without her management and control skills, I'm sure my recovery would have been much more difficult, if not in doubt.

It is impossible to convey how important she was to me. Her role was simply stated as my "primary caretaker." While it may sound simple, the implications were immense. For starters, she took care of my medications, my food, my housing, my spirits, my transportation, my clothes, communications with doctors, our finances, etc., etc.

While you may think that she normally does many of these things for me, the environment, restrictions, and pressure took all of these, and many other, activities to a complete different plateau. I can only imagine how difficult it was to deal 24x7 with someone with both mental and physical capabilities highly impaired. Luckily, with the help of friends, she was able to steal a few minutes for herself, although they were hardly enough to give her a real break.

This October we'll celebrate our 35th wedding anniversary. I've always known that I was the luckiest man on earth to have attracted her as my wife. I don't know how it was possible, but this experience has greatly increased my love and appreciation of her. We're both looking forward to the day when we'll be able to do outdoor activities together again and my energy level and mental facilities will allow us to lead normal, or at least close to normal, lives again.

Jennifer, thank you so much for everything. I love you more than words can express.

It has been a couple of weeks since my last blog update, so while I don't have much definitive to report, I thought a short update would still be worthwhile, especially since a little has happened the last 4 days..

My visit to my eye doctor showed that my left eye inflammation was coming back although the eye pressure remains low. He decided to put me back on eye drops. He, my Stanford doctor, and two ENT doctors claim that my left sinus problem is not related to my left eye problem. I'm not convinced. I'm not normally a betting person, but I'm willing to bet that my eye and sinus clear up within a week of each other..

Shortly after my last entry we started a heat wave here. Not all that bad, but certainly I found it draining. I started feeling a little more tired and with less energy. I still didn't feel bad, but not as good as I did most of August. I'd wake up with pressure over my eyes and a sore neck. They would work out fairly quickly but not a good way to start a day. I realize that the heat way may not be the cause, but it was very coincidental.

Last weekend we drove up to Reno and Tahoe for four days that centered on my niece's adopted twin boys baptisms. I was very careful to stay in the shade all day and took both a morning and afternoon nap. In the evening I started feeling quite itchy. Sunday morning, I noticed a minor rash on my legs and Jennifer saw more places with rash and small welts. It appears to be that GVH is coming back. Last Friday I dropped, according to schedule, my prednisone to 10mg every other day. Maybe this is too low, although I really, really want to get off of all immunosuppressants. If the rash gets any worse, I'll call Stanford otherwise I'll wait until I see Dr. Arai on the 17th. I should note that it seems every time I drop my prograf or prednisone level that I have a couple of days of what I take as minor GVH symptoms. Let's hope that this is the situation now.

I've had another good week and am beginning to feel pretty human. My brain is still mushy, but improving. We've been having significant internet connectivity problems with our wireless ISP so I've been working on that way too much. But it does make me think and works my mind which is good.

Not much to report this week, except I need to change some of what I said in last week's entry. Monday's visit with my hematologist at Kaiser "clarified" a few things. First, I am still on Prednisone which he told me is an immunosuppressant which I didn't realize. So last week's report that I'm off of immunosuppressants was premature; unfortunately it means that all those things I listed that I thought I could now do have been put back on hold. Additionally, he said that once I stop taking immunosuppressants that it takes about two months for them to clear my system and thus I should be careful during that time. I have a schedule for tapering off the Prednisone and if that schedule holds and I have no GVH problems, I should be able to do all those activities by Thanksgiving. They have always said that it would be about a one year recovery period.

My next doctor's visit isn't until Sept. 17 so hopefully I will continue to do well and there won't be much to report until after that visit. I do however have a blog topic that I've wanted to address for some time but (I promise) will be addressed within the next two weeks. Keep tuned.

Another good week for me and a good visit today to Stanford and Dr. Arai. My blood counts were all down a tad from last week but nothing to be concerned with. Dr. Arai said I should stop the last of my immunosuppressants (a big YEA!) and magnesium. Being off of immunosuppressants means lifting of a lot more restrictions on my activities. For example, I can now (within reason) take walks in the woods, go swimming (but avoiding head submersion and diving), gardening (digging in soil), mowing the lawn and raking leaves, carpentry work, occasional woodwork, get a new pet (we currently don't have any), golf, eat sushi, drink alcohol, and eat smelly cheese. I'll take it very easy on these for a couple of weeks to make sure the immunosuppressants dissipate before I get too adventuresome. On the other hand, I've been told that I'll have to be "paranoid" about sun exposure for the rest of my life because any skin irritation due to the sun can activate GVH.

And it is now official that I am transitioning from Stanford care to Kaiser. I see my Kaiser hematologist, Dr. Feiner, on Monday and don't return to Stanford for a month. The major concern now seems to be keeping GVH under control. Hopefully, I won't have to back on immunosuppressants and that I won't have serious GVH so it can be controlled with Prednisone (a nasty drug) or even survive with no medication. Today for the first time I heard Dr. Arai say that my case of GVH was "significant."

My white counts are quite good now. The red and platelets are OK but still significantly below normal. The bone marrow test taken last week shows no abnormality but I'm still showing some signs of MDS because my red counts are weak. There is reasonable hope that the red counts (and platelets) will be on an upward trend because the marrow will multiply and produce more blood cells; it is not clear how long this might take.

We did make it to visit Devin and his parents this week from Monday thru Thursday. It was a great visit, partially because I felt much more like a functioning human this trip.

According to two different measurements, I'm past the 1/2 year mark since my transplant. The transplant was on 2/9 and we are now at 8/11. And 183 days is more than half of a year's 365 days.

This past week has been another good week. I might even say it was a very good week. My side effects are under control except for the hoarseness which is annoying but doesn't hurt at all. My strength is slowly returning; I continue to walk almost every day missing just two this past week because of an early Stanford appointment and attending Bill Walsh's memorial at Monster Park. However on both days I did get some exercise.

The four main blood counts that I track were all up this week. Here are this week's counts which you can compare with those from the week of July 28, below.

There was other good news this week. They did the six-month bone marrow biopsy on Thursday and I should find out the results next Friday. This biopsy didn't go as smoothly as the previous four, possibly because the first attempt was made by a medical student (or who appeared to be in training) and the doctor finally got a good sample on the second attempt. Also, since my blood counts have been creeping up and my platelets are over 50, they took out my catheter on Thursday. (See Jan. 28 entry for a picture of the catheter.) The "cuff" of the catheter which was supposed to bind to the skin had, in fact, done a very good job of this over the past six months and came separated from the main catheter line and remains in some unknown place in my upper right chest. If it doesn't bother me, which is likely, it will remain there. Finally, it appears that the prednisone solved my gut problem so I probably did have a case of GVH of the gut. We're tapering off the prednisone but if the gut problems return, I'm supposed to up the level again.

The only disappointment is that I'm still on immunosuppressants after six months. There are a number of restrictions that I still have which would have gone away at six months if I was off the immunosuppressants but I didn't make it because of my GVH issues. Dr. Arai pointed out last week that about 50% of the transplant patients with an unrelated donor (like me) remain on immunosuppressants more than a year after transplant. Let's hope that doesn't happen to me.

My Kaiser doctor's office called to set up an appointment to see him. I'm reading into this that Stanford and Kaiser think I'm well enough to transition back to Kaiser for normal care. I'm sure I'll continue to have some appointments at Stanford since I'm part of a clinical study.

Our current plans for the coming week include attending a reunion on Sunday of a group that I worked with in the late '60s and early '70s. We get together every couple of years. Then on Monday we'll head to LA to see Devin and his parents, returning on Thursday so we can make a Friday Stanford appointment.

So overall things are looking quite positive. We'll keep hoping for no more significant relapses.

This week kept getting better as the week wore on. Early in the week I was still feeling the malaise that has affected me most of July but Wednesday I felt pretty good and each day since has been just a little better. I feel like I'm almost back to where I was at the end of June but with higher blood counts.

Dr. Arai continues to be optimistic about my blood counts and situation. I wonder if any of this is to counteract my continuing concerns about the nasal/eye/neck/vocal cord "side effects" I'm still experiencing. Luckily the nasal/eye/neck are now just a nuisance rather than painful. My hoarseness seems to have returned; I first noticed it on Wednesday.

Almost every day (8 out of the last 9 days), I have taken a morning 1 1/2 mile walk to the end of Adams Road. The route is mostly flat but there isn't any truly flat land where we live. I think there is a chance that the physical activity has aided my improvement this week, although I think that giving up on the doctors solving my side effects and deciding I was on my own for getting better also contributed.

The blood counts were a little mixed on Thursday but are still tending up. Since they are doing my 6 month blood marrow biopsy this coming Thursday, Dr. Arai is thinking it may be a good time to take out my catheter if the blood counts continue to improve, or at least hold. One possible glitch may be that she put me back on 30mg of Prednisone which has a side effect of lowering blood counts.

The reason for the Prednisone is because my gastrointestinal system has not been happy the last couple of weeks. I found the thought of eating unappealing. In fact I've lost about 5 pounds in the last 10 days. I can't ever remember weighing this little, but my memory only goes back to around 1970. Dr. Arai thinks I may have a mild case of GVH of the gut and the Prednisone is just-in-case (even though it is a fairly nasty drug).

We were planning to head down to LA again this weekend to see grandson Devin again (oh, and his parents too). My other son Keith and his wife Michelle are going to be there and it would be nice to all get together. Unfortunately, Keith and Michelle are recovering from sore throats and nasal congestion. After conferring with Dr. Arai, we decided it would be prudent for us to stay home this weekend. We do plan to head down on Aug. 13 for a few days to visit with Devin. His diaper rash is another minor concern and hopefully it will be gone by the time we get there.

This has been a busy but pretty much a dull week. We got back home Tuesday evening so we could make a 9AM appointment at Stanford with a nose doctor. Unfortunately he didn't see anything wrong with the sinuses. He did give me a prescription for a combination antibiotic/antiinflamatory pill in case the nose should get worse. It has very gradually been improving over the last couple of weeks but I refuse to consider it healed since it does still bother me. Wednesday afternoon we saw my eye doctor at Kaiser. The pressure in the left eye is back to normal and the inflammation in better. We go back to see him in two weeks. I had been hoping that one of the doctor's would find a magic bullet that would cure my head problems, but no such luck.

We saw Dr. Arai on Thursday. She was happy with my blood counts and no transfusions are needed this week. She was thinking about putting me on an every two week visit schedule but since my six-month bone marrow biopsy will be in two weeks, I'll see her again next week. This will also give us another blood test reading to gain some confirmation that my counts are indeed staying in the safe range, albeit below normal range in most cases.

Here is a table of my last several blood test results for those interested in quantitative rather than qualitative results.

Date	White Count	Red Hematocrit	Red Hemoglobin	Platelets
29-Jul	3.6	28.1	9.7	54
19-Jul	3.6	29	10.2	48
12-Jul	3.1	24	8.5	41
9-Jul	2.8	25.6	8.9	37
10-Jan (last Kaiser)	1.7	27.9	9.2	38
Kaiser normal range	3.5-12.5	39-51	13-17	140-400

Out visit to LA was great and we have a fantastic grandson. We also saw a little of his parents while down there :-)

This is being written from the Mar Vista area of Los Angeles, home to my new grandson. (See last week's blog for the URL to pictures.) Jennifer is in seventh heaven; it is hard to get the baby out of her arms.

This has been a very interesting week. Last Thursday night I was sitting on the couch watching TV and the room started spinning. It didn't last long. As a result the doctor has put a hold on my Procrit shots because that may have caused this.

Saturday and Sunday I had a number of episodes when my left eye lost vision for a few seconds. We called Stanford and ended up going to Kaiser emergency per the recommendation of Kaiser's advice nurse. The loss of vision was for only a handful or two of seconds and came back first in the middle of the eye and then opened up until fully back. It reminded me of a closed iris opening up. They made a Monday morning appointment with an ophthalmologist at Kaiser that I had seen last year. He found inflammation in the left eye and high pressure in the eye and prescribed two eye drops. I see him again this coming Wednesday afternoon.

My sinus condition still isn't right but is now tolerable. I have an appoint with an ENT doctor this coming Wednesday morning. Hopefully they will find something since I still believe my sore left sinus, sore left neck, and my left eye problems are all related.

On the positive side, the blood counts that I track were all up again and higher than they were at my last Kaiser test in mid-January. So there were no transfusions this past week and no Procrit shot either. My next appointment with my BMT doctor is this coming Thursday morning.

I'm hoping that we solve the problem on the left side of my head real soon. I still feel almost a total lack of energy and like I'm in a fog. I can't wait to get back to the way I felt toward the end June.

I met with Dr. Arai today. She said that the CT scan of my sinuses that they did on Monday did not show any infections. She is trying to get me an appointment with a ENT doctor at Stanford early next week. Luckily, she was able to get me the CT scan this week instead of waiting until the 19th. I ended up having a very bad day last Saturday; this week it has been better but still not right. Hopefully the ENT doctor will find something he can treat and I'll get over these nagging problems soon. The doctor also reduced my Prograf (immunosuppressant) from 1.5 mg/day to 1 mg/day. It is heading in the right direction. Finally she started me on a series of weekly shots of Procrit which is supposed to increase red blood cell production. Since I'm getting two units of red cells today, if the Procrit works or my body starts producing enough red cells on its own, I'm hoping that I can get off of red cell transfusions soon. My platelet and white cell counts were both up a little today.

The other big news is that Vincent & Jonalyn delivered Devin Vincent Busam today just after noon. Today also happens to be his great-grandfather Busam's birthday. Since he was due last Friday, we were wondering why he was waiting. A few pictures are available at http://www.devin.busam.com. We plan to be in town next week but may head to visit Devin, Vincent, and Jonalyn on either 7/20 or 7.27.

Well, the roller coaster continues. After two good weeks, I had a bad week. Last Sunday night the nasal and neck problem I've been having turned from discomfort to pain. Monday and Thursday were awful days - the kind where you just want to die. Tuesday, Wednesday, and Friday were bad but tolerable. Today looks like it will be a tolerable day. A week ago, my doctor ordered a CT scan of my sinuses and the earliest they could schedule me for was 7/17 at 9PM but I opted for 7/19 at 6PM instead. Hopefully they will figure out the problem and get it fixed.

When I saw the doctor yesterday she said my white and red counts were down but the platelets were up. So I got two bags of red cells yesterday. She also took me off of Cellcept (one of my immunosuppressants) and my Prednisone tapered off to zero this week so I now have two fewer drugs to take.

I sense that she is beginning to be concerned about my blood counts bouncing up and down instead of gradually improving and staying at low levels. One of her other patients, who we know, got a "boost" yesterday after experiencing the same blood count bouncing. Her donor, who is her brother, was at Stanford this last week and did another donation. There is also talk that another patient we know may also be getting a boost.

Hopefully there will be no problem if I need a boost but it will need to come from the same donor. I mentioned earlier that my donor was a 21 year old woman. Since then we've found out she is German, and living in Germany, and attends a University studying to become a primary school teacher. Let's hope everything works out and I don't need a boost.

Yesterday was the baby's due date but still no news from Vincent and Jonalyn. Maybe the baby wants to be born today, 7/7/07. If it is born today or early tomorrow, we'll head down to LA returning in time for next Thursday's doctor's appointment.

It has now been more than 20 weeks since my transplant. Everything seems to be going well according to my doctor. I do have a left sinus and a sore neck that continue to bother me.

Last Thursday's visit to Stanford went smoothly and we were out of there in two hours. Quite a difference from the previous week when we were there for 10 hours. This week my white counts we back up to the lower end of the "normal" range and my platelets we up a little. The red cell count was good enough that I didn't need a transfusion. Additionally, the dosage for two of my drugs was lowered. All in all a good week. Now if we can just clear up my sinus and neck.

Next visit to Stanford is scheduled for Friday, 7/6. The just happens to be the due date for my grandson.

Early this morning we found out that we didn't have any water! There was a problem by the control box by the well and resetting the power has solved the problem, at least temporarily.

Not much to report on the medical front this week except that I got the results of a STR test they did the previous week. It shows that my white cells are 100% from my donor. This plus the GVH I had indicate that the transplant was successful. My platelet count held so I didn't need platelets on Thursday. My red cells were barely below the transfusion point but I got two units of red as a precaution. I've been getting my energy back and don't want to regress.

On a different note, the San Francisco Symphony has been having a Prokofiev festival consisting of four concerts where they are playing all five of his piano concertos along with some of his other works. I've wanted to hear the cycle of all his piano concertos since the now defunct San Jose Symphony did two of them some years ago. I do have all of them on CD and have been listening to them a lot. Last night I went to my third concert of the festival and Sunday I attend the fourth. I'm really enjoying them. To me they are worth every minute I'm spending and every penny of the cost.

This has been a pretty good week for me. I'm in good spirits and most of the maladies I mentioned last Sunday are either gone or greatly improved. I have a little more energy and getting by with less bed time than a couple of weeks ago. On Thursday the doctor reduced the quantity of three of my prescriptions so we're restarting the tapering off of the immunosuppressants. This is very good! My white counts have been back in the normal range for the last two blood tests. My red cells were holding. I did need platelets again on Thursday; we've been told that they are the last to recover.

There is still a long way for me to get to whatever my new "normal" will be. But I'm feeling well enough that I can be positive about me getting there. Next visit to my doctor at Stanford is Thursday. Let's hope that at least the whites and reds are holding.

Emotionally, I'm back to "normal" after making my last entry. It has been another week of mixed news. My GVH is under control and going away. As a result, two of my medications have been decreased. I've developed tender spots in my mouth which caused yet another drug to be added to my list. Finally, some internal hemorrhoids developed but seem to be coming under control; I think the trigger might have been some spicy food that I ate Tuesday for lunch.

My white blood counts went up a little this week. Unfortunately the platelets and reds keep going down. I'm writing this while I'm at ITA getting both platelets and two units of red cells today. This is after getting platelets on both Tuesday and Thursday this past week. On Thursday my platelet count was 17 and a test showed they went up to the mid-40s after the transfusion. This morning they were back down to 15. I can't wait until I'm producing enough platelets and red cells to be self-sufficient.

I also notice that I've been sleeping less this week, which is probably a sign that I'm gaining strength. I've skipped my afternoon nap for at least four days and have been in bed fewer hours at night. Friday was a fairly active day since we went to San Francisco and spent about 7 hours with Jennifer's brother Kevin who was in town on a business trip. We spent over three hours walking around the Asian Art Museum. My original plan was to borrow one of their wheelchairs and have them push me, but I ended up walking through the exhibits.

Saturday we went to a National Marrow Donor Program (NMDP, marrow.org) seminar for BMT survivors. Both Jennifer and I thought it was very useful and are glad we went. They had a couple of general sessions and we also attended break-out sessions on GVH, Alternative Therapies (focused on imaging), and Relationships. There were a number of survivors attending, some whose transplant was more than 10 years ago. Between the presentations and talking with survivors, I think we can now better anticipate, and prepare for, long term side affects. While we always "knew" that life would change because of the BMT we have better internalized it now. We really didn't find out anything that Stanford hadn't mentioned in their handbook; the seminar helped make it real rather than just an abstraction.

Our next scheduled visit to Stanford is this coming Thursday when I meet with my doctor again.

I'm finding today's entry hard to write. But if I don't start typing there won't be any entry at all, so here goes....

The red cell transfusion I got last Saturday and some good sleep seemed to work because my energy level was back up Sunday afternoon. I was feeling pretty good and on Wednesday we headed down to Monterey to visit some friends, take a short walk along the waterfront, and have lunch on the wharf. The overcast was good since I'm supposed to avoid sunlight.

Wednesday night my neighbor's dog woke me up at least six times during the night with barking. I woke up with a headache, sore neck, tired, and surely high blood pressure. I was wasted most of Thursday. Friday night it started barking again so at 11:15 I moved to the guest bedroom. I've found that if I don't get a good night's sleep that the following day is awful.

Friday's visit to Stanford was a downer. My three major blood counts are all down from the previous Friday, even though I got red cells and platelets the previous Saturday. Not good in my opinion. We know another patient, who is a few weeks further along than I am, who just went through a crisis because their counts went way low. She was hospitalized for a few days and there was even talk of getting a booster transplant. All of a sudden they seem to have pulled through and their counts are heading up. I asked my doctor yesterday if this could happen to me and the answer was "yes." Hopefully it won't.

I'm showing clear side affects of the drugs, such as chills, cramps, and shaky hands. And my brain still isn't functioning as well as it should. Both Jennifer and I think that the GVH isn't really improving but the doctor thought it was a little better. So what happened as a result? I have one new drug to take, the dosage on two existing drugs has been increased, and I need to take more magnesium. They also gave me platelets yesterday. Tuesday I go back to Stanford for another blood test and I'm predicting that I will need red cells then. I see the doctor again next Thursday.

We've always know that this trip would be a roller coaster ride. This morning I feel like I'm on a steep descent. The doctor did hold out some hope that everything could straighten itself out by the six month mark (around Aug. 9). Let's hope so.

The National Marrow Donor Program is holding a "Living Now Survivorship Conference" next Saturday by the San Francisco Airport. Both Jennifer and I are going. Hopefully it will be a good pep rally for me. This means the next blog entry probably won't be until Sunday 6/10, unless something significant happens in the meantime.

As I write this I'm in the ITA unit at Stanford getting both platelets and red blood. My white counts keep going up but the other two aren't kicking in yet. I've had hoarseness for several weeks now and it is annoying me. There are many causes of laryngitis so we're hoping it just goes away soon.

Although I know the recovery period is about one year, there was so much talk about the first 100 days being a big milestone that I think I'm feeling a letdown now that it has passed. This letdown is partially because I've been feeling very tired the last four days, more so than I have anytime recently except at the wedding. (I was feeling good on Monday and Tuesday for the drive home.) Hopefully, this is just a carryover from the wedding and I'll recoup quickly.

Yesterday I had my first visit with my "main" doctor (recall that BMT treatment is a team affair) since before I went into the hospital in January. She verbally gave me my bone marrow test results which were quite technical. But I liked her summary when she said the results painted a "very good picture." The results also did not show any abnormal red blood cells as were in my January bone marrow test.

Overall, I'm feeling that I want to start doing things again but realize that I'm not really ready yet. The drugs are still affecting me. It is clear that I'm not yet back mentally and my body isn't ready as evidenced by being so tired and having shaking hands which causes poor fine muscle control with the fingers, e.g. writing and putting in my hearing aids.

My GVH really started to clear up last weekend so yesterday they reduced my Prednisone from 60 mg/day to 40 mg/day. This is the first step in resuming the tapering off of my remaining drugs. There is a fine balance between tapering off the drugs and keeping GVH gone - or at least under control. When the doctor saw the remnants of my GVH yesterday, she indicated that it didn't look like a minor case of GVH as I had understood it to be. Maybe the severity of GVH is in the eyes of the beholder.

(Added at 5pm) I forgot to mention that I had a Coach Bill Walsh sighting at the ITA yesterday. I saw him come in and before I left I waved to him from the hallway and showed him my 49er mask. He smiled and waved back. Jennifer had seen him in the hallway a few weeks ago.

No medical news to report since I haven't been back to Stanford since last last Tuesday. So this is an update about the trip to Keith and Michelle's wedding.

We left Thurs. 5/24 for Los Angeles and spent the evening with my son Vincent and his wife Jonalyn. Friday we were up early and left around 6AM for Phoenix. I didn't get in a nap before the wedding rehearsal and other events which later took its toll since I was up until midnight. On Saturday, except for visiting with my brother and his wife for breakfast, all I did was sleep and take a shower before leaving for the wedding site around 4:30. I was fine during the wonderful wedding and reception. Around 9PM my energy level went south and I was in bed by 10:15; luckily Jennifer got to stay and party longer. Sunday was mostly a day of rest at Jennifer's parents place with a good nap in the afternoon. In order to break up the driving on the return trip, as we did going there, we stopped in LA again for Monday night. We finished the trip getting home late yesterday.

I'm awfully glad that I went to the wedding. My thanks to the ITA staff for encouraging me to go. You can see a wedding picture that my nephew took for me on my home page at http://www.busam.com. From my standpoint it was a great wedding. As usual, I didn't get to talk to as many people as I wanted or for as long as I wanted.

My next trip to Stanford is this Friday and the first time I'll have a visit with my "main" doctor since before I went into the hospital. So in the past few months, I've gone from the hospital to the ITA and now I go to what they call "clinic". Sounds like progress to me!

Stanford cleared me to go to the wedding in Phoenix this weekend! They relaxed, but didn't completely remove, my restrictions concerning the mask and the low microbial diet. I am supposed to be careful. I should use the mask when dusty, windy, when in medical facilities, etc. I still need to be careful what I eat, especially when eating out. I'm not completely clear what this means because I can have a small salad but not a big one. But since I know the diet guidelines, I'm confident that I'll be able to be pretty safe.

The overall goals at this point are (1) don't get sick especially avoid infections, e.g. no viruses, bacteria, fungus, or molds, and (2) really, really be careful about exposure to the sun because it can cause an onset of GVH (this may be lifelong).

The Prednisone is slowly helping my GVH to clear up. Yesterday they reduced my does from 80mg/day to 60 mg/day.

My white blood cell counts are creeping up and are into the normal range but are being suppressed because of the immunosuppressants I'm taking. My red cell counts went down again so I got two units of red cells yesterday which will hold me over for the trip. The platelets also are continuing to drop. If they don't recover soon, I may need platelets in a week or two. No one at Stanford is concerned and in fact their Guidebook says "When your bone marrow recovers it will first produce white blood cells, then platelets and then red blood cells. It is quite common to continue to need transfusions of red blood cells and platelets even after your white blood cells have recovered." They did not take out my catheter yesterday because my platelets are low enough that they were worried about bleeding.

Another piece of really good news is that the results of last week's DNA test is that the donor portion of my blood continues to increase. Here are the main numbers from my 3 DNA tests:

Date	Overall	White T-cells	White Glanulocytes	White B-Cells
3/2/07	67%	42%	63%	74%
4/5/07	87%	69%	90%	94%
5/10/07	96%	87%	91%	97%

(Stanford actually call this a STR test, Short Tandem Repeats, an analysis of a section of the DNA done for all the major blood cells.) The goal of course is to reach 100%; I'm getting there.

Every once in a while I mention the Guidebook from Stanford. For those of you with WAY, WAY too much time on your hands or who are planning on getting sick so you too can have a bone marrow transplant, check out http://bmt.stanford.edu/patient_care/downloadable_guides.html. The Guidebook that applies to me is for Allegonic Transplants. My transplant was non-myeloablative. The Guidebook seems to have been originally written for myeloblative transplants with non-myeloablative information tacked in later. As a result some of the advice I get at ITA is slightly different from that in the Guidebook, but the book is still extremely worthwhile.

The next milestone is to get the catheter removed and stop getting transfusions. The major upcoming milestone is to get entirely off the immunosuppressants which still might be several months off.

Yesterday at ITA they did my day 90 bone marrow biopsy. This is their way of verifying how well the transplant (graft) is taking. Hopefully, I get the results next Tuesday. My white blood counts are beginning to creep up but my platelets and red cells still are bouncing around. Today is my last day of Valcyte, which is known to suppress blood counts, so I'm hoping they start an upward trend.

My rash now essentially covers my whole body except my face. They still consider it to be a minor case of GVHD but I told them it was getting quite annoying. Since the cream we have been applying twice a day doesn't seem to be doing much good, they gave me a prescription for Prednisone yesterday. It seems that it is already helping calm down the rash. The bad news about this is that it can mask infections so it looks like I may not be off the mask or low microbial diet soon. When I queried them in relation to the wedding they seem willing to still let me go but want me to be as careful as I can be.

I'm beginning to feel a little energy returning so that is also good news. Maybe soon I'll be able to think and have a decent attention span again. Most of the guests at last Sunday's shower said they thought I was looking good. I even drew a couple of chuckles with my very dry humor quips; I haven't attempted any for quiet a long time.

A pair of scrub jays are brightening up our days. They are building a good size nest in our atrium, although it is hard to see since it is on the backside of a big bush. I've been wondering how hard it would be to install a webcam so I can keep track of their progress without constantly disturbing them. Maybe we'll become "grandparents" to some scrub jays this year!

I'll try to make time to update this blog next Wednesday after my Tuesday visit to ITA. Then we're off to the wedding so the next update probably won't be until after my Friday May 25 visit to Stanford.

Happy Cinco de Mayo! And I have good reason to be happy today. My son Vincent and his wife, Jonalyn, show up tonight in order to be here for their baby shower that Jennifer is hosting tomorrow. It will be nice to see them again. We're also looking forward to seeing our first grandchild (a grandson) in early July.

Last week's report mentioned my rash, which they thought was GVHD. This week they seem even certain and don't think that a skin test would be of any value. The rash is the same intensity as last week but the area it covers has increased. Last week I could have named a few body areas that had a rash. This week I could name a few body areas that don't have a rash. The cream Jennifer is putting on the rash twice a day is not making it go away but perhaps is helping to control the itch. Luckily the rash isn't too itchy. I can pretty much ignore the rash during the day and there were only two nights where it bothered my sleep. When I do itch, a light rub through clothes by the back of my fingers suffices; no scratching required. I may get a pill next week to help control the rash. I'm down to only a few pills now and was really hoping to keep the number decreasing. The cream does have an advantage for me in that I'm claiming I am getting two mini-massages from Jennifer each day now. Here is a picture of the rash; it isn't very exciting and somewhat out of focus.

Because of a scheduling problem, I probably won't get my bone marrow test on Monday but surely later in the week. It is normally done on day 90 which is next Thursday. I did need red blood again on Friday so my red cell production still isn't self sustaining.

It has been great being home again. It is just so much more comfortable. Another big advantage is that Jennifer has more flexibility in menu planning because of a much better stocked kitchen. My problem is that there are several small projects that need to work. Too much background knowledge is involved to easily delegate them them to someone else, so I keep chomping at the bit to work on them. Well someday.

The good news I got this week is that minimizing use of the mask and getting of the low microbial diet are more related to day 100 than to being on low immunosuppressants. The importance of this is that right now it looks like I'll be free of both these by the time we leave for the wedding. It also looks pretty certain that they will remove my catheter (see Jan. 28 entry and picture) before the wedding. Yeah!

Now is a great, and overdue, time to thank some of the people who have help us over the past three months. In order to keep this manageable, I will briefly mention only a few. Dick and Sue spent the most time with us. Dick stayed with me three different times so Jennifer could head out and do other activities. Sue was constantly offering her assistance and helped get Jennifer out of the apartment. Clayton helped with the move both ways and visited several times. Doug helped us move some furniture. Gary and his son installed a HEPA filter for the house. Lois helped us get our truck back from the mechanic. And of course there were the friends we made with fellow patients and the spouses, most notably Ed and Betsy and also Terrie and Charlie. My boys and their significant others and my nephew John visited as did Jennifer's minister. And not to be forgotten are the numerous team members of Stanford's BMT unit that guided me through these first busy months of recovery. Finally, they are all of you with your emails and phone calls that helped us keep in touch.

Unless something significant happens, my next blog entry will be after I get the results from my bone marrow test which had better be before May 17 since that is the day we leave for the wedding.

The only negative news this week was that they think my rash is GVHD and they stopped the tapering off of my immunosuppression drugs. The only negative of this is that getting down to a low dosage of these drugs is a prerequisite for my getting off of the Low Microbial Diet which I really want to do before going to the wedding. We'll have to wait and see what happens. It may also be related to not having to wear my mask everywhere, but there is some indication that this is more related to time after transplant. Again, we'll have to wait and see. Everything involved in the transplant treatment is flexible since each person reacts differently. We never seem to get a firm answer about the future, only some possibilities.

On the VERY positive side, they have scheduled my bone marrow test on Monday May 7 (day 87 instead of day 90) and are talking about releasing me from ITA and sending me to clinic, perhaps as early as May 11. It also was mentioned that they may soon remove my catheter even though they also said that I may continue to need blood transfusions for six months. Let's hope my blood counts, especially the red counts, go up naturally. I was on the borderline of getting red cells on Thursday but asked them to hold off until we see the counts on Monday and they agreed.

Another piece of great news is that we moved out of our apartment in Mountain View yesterday and returned home. No restrictions were lifted so now we need to be diligent and not fall back into old habits but instead continue to follow their guidelines.

Last week we decided to push the envelope a little and went to a very good Sunday concert with our friends Dick and Sue. I have two of the three pieces they played on CD; the live performance for both was MUCH better than the CD. We changed our opera tickets from Saturday night to Tuesday night hoping to be able to sit in an empty section. This didn't work out since what would have been the empty area was filled with a high school group. But we enjoyed the opera anyway and I haven't gotten sick.

My beard is coming along nicely. I expect that it will be in good shape for the wedding on May 19.

This has been the second week in a row with good news. My blood test on Thursday showed that my red blood cell count, white blood cell count, and platelet count are all slightly higher than they were when I went into the Stanford Hospital in late January. The balance between the different types of white cells is completely different than in late January which the next 10 months of recovery should resolve. In addition the CMV count is way down so the drug is beginning to work; I'll be on Valcyte for the full six week period.

On Thursday we had a different Physician's Assistant than before our San Francisco Symphony concert. He expressed concern over the two concerts we had planned for this weekend. The big problem is that, even with my mask on, there can be lots of viruses and bacteria in the air. With my immune system still minimally functional, I would be at high risk if I catch anything. When we went to San Francisco, we didn't sit in our normal seats but worked with an usher to find a fairly empty section at the back of the balcony so at least we would be somewhat isolated. Both concerts this weekend should be packed. We're still debating what to do.

I've been cutting down on my two immunosuppression drugs. This is surely helping my blood levels. However the risk is GVHD (see entry for Feb. 6). This week a nurse noticed a minor rash on my chest and back which is likely GVHD. They keep saying that having a minor case of GVHD is good but still haven't heard a good explanation of why. Luckily they can control GVHD by increasing my immunosuppression drugs..

On March 31, I reported that my hospital roommate had died. This week I heard that he did not die of GVHD but of an infection. Hmmm. The Stanford Handbook says "Chronic GHVD is rarely fatal but it can lead to a life threatening infection." This sounds to me like saying that people rarely die from a car crash, rather they die from injuries. (I realize that GHVD doesn't cause the infection whereas the crash likely caused the injuries.)

We're hoping to be able to move home at the end of this month which would be about three weeks early. I'm not sure how good our chances are but it's worth a try.

Just got my second DNA test results back today and the results are VERY GOOD! They did four different tests to see what percentage of the cells are from my donor. 87% of my overall white blood cells are from the donor. 69% of the white T-cells, 90% of the white Glanulocytes, and 94% of the white B-cells are from the donor. These percentages are 20% to 27% higher than the test they did five weeks ago. The graft is definitely taking! (see also the entry for March 7 for more background) The next big test is a bone marrow test that is done around day 90.

For some reason my CMV level went up even though I had taken the drug Valcyte for it for one week. This probably means I'll be on Valcyte for six weeks instead of just three. I'd like to get off it because one of its side effects is that it lowers the blood counts.

Other than that I've been feeling pretty darn good. My sinus problem is almost gone and my sore neck at night has also improved. Mentally, I think I'm clearing up some, perhaps because they have lowered my dosage of two different immunosuppression drugs. But after climbing two flights of stairs to our 3rd floor apartment, I'm still huffing and puffing.

I decided that it was time to start growing my beard back, mainly because I want it to look good for Keith and Michelle's wedding on May 19. I checked with the doctor at ITA and he said to go ahead. Anyone want a used cheap electric razor? Speaking of the wedding, several nurses at the ITA have been positive about my chances of attending the wedding. One even said that if my levels were low or marginal before I left for the wedding that they would "tank me up" so I could get through the 5 or 6 day trip. We'll be driving to Scottsdale, AZ since I am not supposed to get on an airplane for a whole year.

The good news this week is that my sinus problem is slowly improving. The nose doctor said that I didn't have any infection (good news) and that I just had inflamed sinuses, probably caused by an allergy. He recommended a nasal rinse (NeilMed), continuing the Flonase (prescription), and some Sudafed. With the improving sinus, I've been sleeping better at night (which is very good!) and my sore necks at night are also going away. It is surprising how a good night's sleep improves my disposition the next day.

It turns out that a side effect of the medicine for CMV (see last week's report) is decreased blood counts. Just what I don't need. It just means that it will take longer for my blood counts to get high enough so I won't need any more transfusions or shots to increase my counts.

On the personal side, we want to thank Gary (a relative on Jennifer's side) and his son Andrew for adding a HEPA filter and an electronic air cleaner to our heating system. This will be of great help when I'm back home and still recovering and beyond - especially since I may now need to worry about allergies. Wednesday evening we had Terri (another BMT patient) and Charlie along with Ed (another BMT patient) and Betsy over for a pot luck dinner. Both couples are also staying at Oakwood and we've become good friends. Nothing like a common "enemy" to help people bond. Thursday, with Stanford's approval, we went up to a concert by the San Francisco Symphony. I had to wear my mask during the whole concert which wasn't as bad as I had feared. Whenever I needed a drink of my boiled water, I took a deep breath, lifted my mask, took a swig, put the mask back down, and exhaled. I got pretty good at this sequence. Overall it was an enjoyable trip; definitely better than not having gone. We've given away a lot of our season tickets the last couple of months but think we'll be able to use those for the rest of the season.

We've reached day 50! Half way through the "magic" 100 day treatment period. And I did mean "we" since you are all going through this with me. Thanks for your support.

No significant setbacks this week but several pieces of mixed news. On the plus side my knees are much better and today I even took a walk. On the negative side, my sinus problem just won't go away with normal medications so I have an appointment next Tuesday to see a Ear/Nose/Throat doctor. They did a CT on my sinuses and everything looked normal so we'll see what the ENT doctor finds. Friday afternoon we got a phone call from the ITA because I've tested positive for CMV (Cytomegalovirus), which is a member of the herpes virus family including one form of the common cold. It can be bad for someone like me with a weakened immune system so I'm getting another drug to head off any problems.

I had a strong reminder this week that the "magic" 100 day period isn't really that significant. When I entered the Stanford hospital at the end of January I had a roommate. He had his transplant last September, got through his 100 days, and was released to go home. However he was back in the hospital in January with GVHD (the dreaded Graft Versus Host Disease that has been previously discussed). His problem was in his gastrointestinal tract. I found out on Monday that he past away because of severe GVHD. This hit me pretty hard and reinforced for me that the recovery period is really, really more like a year than just 100 days, even though a lot of restrictions are relaxed around day 100.

Another relatively uneventful week although today I started cutting back on one of my immunosuppressants, Mycophenolate (aka Cellcept). I have been taking 3750 mg a day (1250mg every 8 hours). Starting today I get to cut back 500mg a day each week. So for the next seven days I will be taking 3250 mg a day, then 2750 mg a day for the next 7 days, etc. It will take about 7 weeks to get down to 0.

Also I got to start some dairy today. I started out today with one slice (think pre-packaged) of Monterey Jack. I then get to build up veeerry slooowlyyy.

My platelet and red cells counts have been dropping slightly this week. This is quite common and even mentioned in the handbook Stanford gave us. We were reassured verbally today that there is no need to be concerned over this, although I'll admit that I'd be much happier if the counts were going up.

Except for some nagging continuing problems (sinus, knees, toes, occasional sore neck) I'm still doing fine. Stanford doesn't think any of these problems are caused by my treatment but I'm not so sure that the knee problem isn't related.

The last weekend we had a great visit with Vincent and Jonalyn and with Keith and Michelle. My nephew John even stopped by for a while on Sunday. Great weekend but I was tired at the end.

This has been a relatively uneventful week, which is how we like it! I continue to make good progress. I am now a tad more than 1/3 through the "100 day" period, although we hear that a number of patients get released a few days early. They better release me around day 95 if I'm going to make it to Keith and Michelle's wedding in Scottsdale on May 19. We will have to drive there since I'm not supposed to fly for a whole year.

My assorted discomforts continue. Between my gimpy knees and toes I haven't been taking walks but I have been using the exercise bike in our apartment's gym. My low grade headache turned out to be sinus problem which caused a cough because of post-nasal drip; medicine is curing this situation. While my platelets and white cells are slowly climbing, I continue to need red cell transfusions although less frequently than before. They've cut be back to only two ITA visits a week so they must also be pleased with my progress.

Just got the DNA test results back today and the results are VERY GOOD! They did four different tests to see what percentage of the cells are from my donor. 67% of my overall blood cells are from the donor. 42% of the white T-cells, 63% of the white Glanulocytes, and 74% of the white B-cells are from the donor. The graft is definitely taking!

My platelet counts were up on Monday and again today. My white cells are high enough that I can stop taking Cipro. One drug down, five more to go. I had a red cell transfusion on Monday and may need another one soon - but this is normal. My magnesium is still low; they have been giving me lots of magnesium by IV and I am taking supplement pills in addition. This is also normal.

I'm still feeling very well but I do have a few assorted aches - but not really pain. Both my knees are gimpy and my big toe nails are acting up (something I've had since a teenager) which both help limit how long my walks (for exercise) are. I have a minor headache which may be drug related but it is mild enough that I don't feel the need to take Tylenol for it.

For some time I've been meaning to mention how pleased I am with the care I'm getting at Stanford. The whole staff seems competent and caring. It is run as a team effort and I rarely have the same nurse two days in a row. The Nurse Practitioner or Doctor's Assistant is more stable since there only seem to be three of them. The doctor is assigned to the ITA on a monthly basis. While I certainly hope that none of the readers of this blog ever need a bone marrow transplant, I will have no trouble giving Stanford a great recommendation.

The roller coaster ride continues. This has been an interesting week. My platelet count was down on Wednesday and even further down on Friday. Not good. I'm also to their point where I should get another red blood cell transfusion but we agreed to wait until Monday. And my white cell counts are not coming up. So what is going on? They don't know but did draw blood to do their day 28 test a week early. There is a possibility that the graft (transplant) is not taking. On the other hand it might just be that my graft is taking longer to establish itself than normal. A doctor told me yesterday that this is not uncommon for patients with Myelodysplasia. Hopefully, the results of the test, which might take up to a week to get back, will shed some light on the situation.

On the good side, I saw a neurosurgeon Wednesday afternoon and she said there is a good chance my disc problem will repair itself but it may take up to a year. So for the next year, I need to be careful with my neck. Since the transplant will take about a year for full recovery, it is somewhat convenient that the time periods are the same.

For now, we'll spend the next week anxiously awaiting the results from the blood test, which I think involves some DNA testing of the blood to see how much is from my old bone marrow and how much is from the donor's. Stay tuned....

Everything is looking good at this time. My platelet count has been going up and is now as high as it was in mid-January, before I entered the hospital. I've feeling a lot better than I think I should given the problems that other BMT patients I've met have been going through.

Tomorrow I have an appointment with a neurosurgeon at Kaiser to get her opinion of my protruding disc situation. I'm pretty certain the result will be to just keep a watch on it. My goal is to find out if I should be taking any special precautions in the meantime. My left arm and hand still haven't fully recovered and are tingly but usable.

The main news for this week is we finally have some desirable creature comforts in place at the apartment. Last week we had them remove one of their overstuffed couches and we replaced with a love seat from home and Jennifer's rocking chair. Now we have a couple of comfortable places to sit during all of our time in the apartment. Next, I finally got a LAN working in our apartment for my two computers. I've borrowed a wireless bridge from the apartment's office and put one of my routers behind it so my computers are "protected" by the router. Finally, we got my son Vincent's spare TIVO working so we can now time shift TV programs, a feature we were really missing. (The communications guy at the apartment told us it couldn't be done.) As a bonus, my friend Dick Gunther loaned me a converter from SVGA to TV so I can download TV programs recorded on my MythTV PVR at home and play them on the apartment's TV.

Here are pictures of Jennifer and me in our furniture from home. There is also a picture of me in my mask with 49er covers. As seen in a picture posted earlier, the filters are a fairly bright pink. The 49er cover suits me better.

As you probably realize by now, since these kinds of things are important enough for me to note in this blog, I'm feeling pretty well.

Today has been a good day as has all this week. It looks like my platelets may have stabilized and I may even be producing platelets so there is a chance that I won't need any more platelet transfusions. My red cell counts are a little on the low side but they say that if I'm not feeling excessively tired that they need not give me red cell transfusions either. Hooray!

Because my condition seems to be fairly good they are saying that I only need to go to ITA on Mondays, Wednesdays, and Fridays. That means four days a week have just opened up. The only down side is what to do with the extra time. Since the only places that I can be without having to wear my mask is the apartment, our car, and the ITA, it pretty means more time in the apartment. The challenge will be keeping occupied since I'm still not up for much reading and certainly not going to watch TV all day!

We've been told many times that this will be a roller coaster ride with up days and down days. The short term goal is to get to day 100 in good shape. As of now, it's looking good.

This week's road had a big crater in the middle. It looks like we got through it OK, but it was a concern for a while.

Everything was going fine until Tuesday afternoon. It was such a nice day that Jennifer and I went out for a walk around 4PM. About halfway through the walk my left hand started to feel tingly and my right upper arm began to get sore. By 5:30 or 6 both arms from the shoulder down to the fingertips were tingly and had lost strength. I could barely lift them. So we called up the BMT group at Stanford and they suggested we call 911 and take an ambulance to Stanford Hospital Emergency. They recommended that Jennnifer not drive me over. So by 7:30 the Mountain View Fire Department's Paramedics had visited me, the ambulance had transported me and I was in a isolation room (because I'm a BMT patient) in the emergency department. (The BMT doctor on call had arranged a room for me and all I needed was clearance from Emergency which didn't come until 1:30AM. During this whole time they would not give me anything to eat or drink.) Almost immediately I got a CAT scan of the brain and a chest X-ray. After a while a neurologist visited and gave the OK to release me. No one offered a diagnosis at this point but I was at least stable and had no symptoms except for the arms and hands. The speculation was that all the drugs I've been taking had caused something to kick up, perhaps even the ATG. There was also talk of perhaps doing a spinal tap so see if they could find a virus but no one liked this idea because an invasive procedure in my current condition is not advisable.

The next morning my right arm was greatly improved and my left arm noticeably improved. They decided to give me a MRI of the head and the neck which happened between 7:30 and 9:30 PM. Both the Neurologist and BMT doctors stopped by and talked with me during their morning rounds. The head scan was clean - no stroke or other problem. The neck MRI showed a protruding disc (between C5 and C6). This is almost certainly a preexisting condition and the the drug regime kicked off a reaction. The initial reaction is to "wait and see" but I will meet with a neurosurgeon to get a better description of the problem and possible implications. In any event, we are going to try to avoid any invasive procedure for at least a year after the transplant. As of today, I think my right arm is about 95% back and my left arm and hand maybe 70%. My left hand still tingles and I can't make a tight fist.

Other than that excitement, this week has been pretty normal - meaning boring. Let me use yesterday as an example. We woke up at 7AM, had breakfast and leisurely make it over to ITA for my 9:30AM appointment. They took me promptly and took the normal "daily" blood samples. My nurse, the Physican's Assistant, and the ITA Physician for this week all stopped by to check up on me and see how I was feeling. By noon the blood test results were back and I once again needed what has essentially become my daily dose of platelets, so they ordered up the platelets. About 1 PM they started the platelets, ending around 1:30. For the first time they gave me HLA matched platelets and wanted a blood test taken 1 hour later. So at 2:30 they took the sample and I was good to go. So that took five hours of reading the newspaper, taking a nap, etc. In the morning Jennifer had dropped me off at ITA and went to Adams Ridge to check on the house and pick up a few things including mail. She got back about noon by which time I had a new prescription for Ambian. So she headed up to the Kaiser pharmacy, returning around 2:30. We were home around 3PM. I tried once again go get Internet Connection Sharing (ICS) working between my computers at the apartment. Then we had dinner, watched a DVD, and went to bed. I didn't sleep well largely because I don't get tired enough; I get almost no physical activity. I was OK'ed to take walks but nothing more strenuous because of my low platelet counts. I'll think I'll bite the bullet and take a hike this afternoon and hope that Tuesday's incident doesn't repeat.

My mental energy is way down, which is very common for BMT patients. I get through the newspaper every day and a few magazine articles but feel incapable to delve into any of the books I brought up with me - maybe later. I can't even get ICS working!!! I really am losing it.

The nurse just brought me today's blood test results and I'm going to need platelets yet again. Yesterday morning my platelet count was 5. After the transfusion it was 28. This morning it is down to 7. They consider 10 to be the danger point. It looks like I'll be here for close to two more hours today. Maybe I'll sneak in a nap.

That's it for today's report. After a setback, I'm pretty much back on track. Now I just need something good to occupy my mind instead of just focusing on my situation 24/7.

Today was they day for the stem cell implant. As I had been warned, it was quite anticlimactic; it was just another transfusion that took about 2 1/2 hours. Everything went smoothly. So now Stanford has stopped tearing down my body and we are now in construction mode!

Yesterday was a long boring day at the ITA. I had two half hour radiation treatments and the IVs for platelets, red blood cells, and my third IVIG (immume globulin, each batch cost $6,000!). Thank heavens for good health insurance. Thank you Kaiser. My first appointment was at 9AM and we left at 7PM.

Since there isn't much to say about what happened, here are a bunch of pictures.

Today I'm in the ITA (Infusion Treatment Area) at Stanford for most of the day including getting a four hour IV, so I brought my laptop and will update what has happened in the last 10 days or so.

Overall, everything is going well. I've haven't yet had any significant pain or discomfort. A couple of treatments where I could have had issues all have gone smoothly. It seems that most people have bad reactions to their first day of ATG but I got through the whole week with flying colors. I've also had no problems with the TLI (Total Lymphoid Irradiation) which is a pretty low dose of radiation - at least compared to the old methods. Yesterday I did develop a rash on my legs which is likely caused by ATG, but it has cleared up quite a bit overnight. The one issue I do have is very low platelet counts. They keep giving me platelets but my body quickly eats them up. A test didn't uncover any antibody problems so I'm going to get three four-hour IVs of Immune Globulin. Hopefully this will clear up the problem. Normal platelet counts are from 140 to 400 but mine have dropped as low as 2; they consider a count below 10 to be in the dangerous zone.

I'm going to spare everyone from the numerous and disgusting side effects that I may get. In my opinion you really don't want to know anyway.

Last week and this week Stanford is tearing down my immune system. The goal is to weaken it sufficiently so the donor cells will take over and kill any remaining blood stem cells. Starting with my stem cell transplant (aka bone marrow transplant) this coming Friday, my body will start the rebuilding process. These are the main dangers to be faced:
1. the transplant doesn't take,
2. the transplant takes but the new white cells attack my body (GVHD - Graft Versus Host Disease),
3. I get infected while my immune system is still weak, and
4. side effects from all the drugs I'll be taking.

The ATG (Antithymocyte Globuline, a rabbit protein) is a medication given to weaken the immune system. I understand it mainly attacks the white T-cells, which are the cells that reject foreign tissues (such as the donor's stem cells) in the body. I'll have active ATG in my system until about 21 days after transplant. The only reason I was hospitalized at all was for Stanford to watch and control any side effects from taking the five daily doses of ATG.

The ten doses of TLI are spread over two weeks. It's purpose is also to weaken the immune system. Radiation is delivered to the front and back lymph nodes from the neck to the pelvic area. They create radiation shields for each patient to minimize radiation spill over into other body parts such as the liver.

The actual transplant itself is supposed to be almost anticlimactic; it is just an IV. Time is counted from the transplant date which is called day 0. Today is day -3. Next Sunday will be day +2. Around days 28 and 56 they do some DNA blood tests to check that the donor cells are indeed beginning to produce. At day 90 a blood and a bone marrow test are done to see if most (or even all) of the blood cells are donor cell produced. If everything is going well at day 90, I get some relaxation on my restrictions but it can take a full year for the body to completely recover.

Long term there is risk of chronic GVHD. My hematologist says that most of his patients do have chronic GVHD but that it is usually at such a low level that it doesn't need treatment. On the other hand, my roommate in the hospital had his transplant last September and was back because of problems which may be severe chronic GVHD of the gut. It is quite clear that the are several possible side effects from the whole transplant process which range from GVHD to earlier than normal cataracts.

My plate will be full of pills every day; the current schedule, which can change daily, has me taking about 28 pills a day at the high point. Because they want to keep my immune system weak for a while, I will be taking two immunosuppressants. To help prevent disease, I'll be taking antibiotic, antiviral, and antifungal medications. And I have five medicines which I will take as needed to help with diarrhea, nausea and vomiting. Sounds like fun, doesn't it?

I have a HEPA mask which I'm supposed to wear EVERYWHERE, except in our apartment, in the car (with air flow on recirculate), and at the ITA. Avoiding people is also desired. For example, I asked if I could go into Fry's if I needed to pick up some computer equipment and got frowns from the staff. They said that if I really needed to go, that I should go when the store is empty. The windows in the apartment are to be sealed at all time to prevent air from the outside bringing in microbes. I can't have any plants or flowers or even take a walk on a dirt trail.

My diet is very restricted; they call it a low microbial diet. Among the many items not allowed are alcohol, dairy products (e.g. milk, cheese, pudding), and fresh fruits or vegetables (canned or frozen ok). The word is that because of all the drugs I'll be taking (probably around 30 pills a day) that my gastrointestinal system will be a disaster for some time. They say that eventually my taste for food will return.

The treatment plan I'm on (also called my protocol) was the subject in the New England Journal of Medicine, Sept. 29, 2005, written about the results of 37 patients treated at Stanford. The point of the article is that this protocol reduces GVHD from previously seen levels. Of the 37 patients in the study, 9 died with one year and 1 within two years. Of the remaining 27, only 5 had extensive GVHD, 1 had limited GVHD, 2 not at risk because of secondary graft loss at less than 100 days, and the remaining 19 did not have chronic GVHD. (The average age of patients was 52 years, ranging from 28 to 66.) One of the doctors who wrote the report has seen me twice at ITA and says that the improvement in GVHD results has been holding with patients that have gone through the protocol since the original group.

For the next 35 days or so I'll be going to the ITA on a daily basis. After that they may cut me back to several days a week. I expect I'll get to know the whole staff over this period.

The apartment situation at Oakwood is very nice. We have a nice one bedroom fully furnished apartment. The grounds are nice and the apartment bright and pleasant. We are happy with our choice of place to stay although it is at least a 20 minute drive to the Stanford Hospital. We have good internet connectivity, so email is a good way to reach us.

Today I check into Stanford Hospital for a week. We're very busy today so this note will be very short. We've spent the majority of our time since Thursday morning at Stanford hospital getting prepared for admission. The picture of me shows the markings on my skin for the radiology treatment. You can also see the venal catheter that they placed on Friday. I have also had my first transfusions: one unit of platelets and two of red blood cells. You will note that I shaved off my beard in anticipation of wearing the face mask whenever I leave my apartment; the absence of a beard will allow a better seal for the face mask. Don't worry, I intend to grow it back again!

The shocker of the year occurred on August 5 when Vince’s hematologist officially told him that he has MDS (Myelodysplastic Syndrome, a condition where the stem cells in his bone marrow are not producing enough white cells, red cells, and platelets) and that he should aggressively pursue a bone marrow transplant (more accurately a stem cell transplant). His blood condition had first been detected in the fall of 2001 and he has been closely monitored since then. A bone marrow test in July showed the condition has progressed far enough that it was time for action. To make a long story short, he will start the procedure when he enters Stanford Hospital on January 28 (current schedule), with the transplant occurring on February 9. Three months of intensive monitoring by Stanford followed by another nine months of very careful living then follow. With any luck, he will then be cured and able to live a normal life. As you might have figured out by now, this situation and the fact his energy level was getting low, contributed to deciding that it was time for him to retire.

Good News! Stanford has found four potential donors and has tentatively set Sunday 1/7/06 as the date for me to enter the hospital to start treatment. 1/14 is an alternate date in case the upcoming holidays slow things down.

This is all good news for Jennifer and me. While there are risks associated with the stem cell transplant (aka bone marrow transplant), we feel that the potential benefits outweigh the risks.

Because we live outside of Stanford's "safe-zone", I can't stay at home until the tranplant takes secure hold which is estimated to take about 100 days. So for three months or so we'll be living somewhere near Stanford. We have several options and have until early January to make a decision. One criteria is that high speed internet access is available so I can use my laptop and keep my brain active.

The first three months I'll be at high risk from infections so will almost be quarantined. Stanford has given me a 217 page Patient Guidebook with LOTS of useful information and guidelines. The main goal is to keep me away from any possible source of infection until my immune system recovers. This means only cooked food (no fresh fruit) with lots of restrictions on what kind of food, only boiled water, minimal contact with others, wearing a HEPA filter mask whenever I leave my housing, no plants or flowers, no walks in the woods (or on dirt), air in the car must be re-circulated (not open vent), etc., etc., etc. It will keep Jennifer and me busy just keeping track of all the rules.

The full recovery period could take much longer. One pamphlet says "It takes six to 12 months (or somewhat longer) to recover nearly normal blood cell levels and immune cell function. During this time the patient should avoid contact with crowds, such as at shopping centers, religious services, parties and concerts, to reduce the risk of infection. Patients also may be advised to avoid contact with children who have had recent immunization with live viruses." We'll miss our concerts during this period!

Overall, I'm still feeling fairly well although I tire easily. I still work on projects around the house but four hours a day seems to be enough. Between now and the time I enter Stanford Hospital I'll take reasonable precautions to not get sick.

On a high note, we just had a great Thanksgiving at Keith and Michelle's place in Scottsdale. Vincent and Jonalyn were also there as were Jennifer's parents and Michelle's parents. We'll also see both boys at Christmas time, although they won't both be here at the same time.

We're back home after cutting our vacation short because of Vince getting sinusitis and red eye (probably because of a broken blood vessel) and an appointment at Stanford Hospital's Blood and Marrow Transplant Program. We're glad we went even though it didn't turn out quite as expected. Trip details are at http://www.busam.com/vacation2006 .

Vince has been accepted into Standord's transplant program. Yesterday we had a good initial consultation meeting at Stanford. We were pleased that all of the big picture information we got yesterday was in sync with what we had previously understood. We did get more details and a 3-ring binder with their 217 page Allogeneic Patient Guidebook. Getting the guidebook is a good sign because we really don't need that information until a donor is found; we take it as a positive sign that they gave us the guidebook now.

I don't mind sharing this information. Jennifer thinks that I send the information that I would like to know about my relatives and friends. Some of the recipients of this email may not be interested in all the detail; if you're one of them, please let me know.

The cases of MDS are few enough that this is a "rare disease" and the handling of each case is very personalized. But here are some guidelines for what might be expected.

3 to 4 months to find a suitable donor (40% chance of finding one)
6 weeks of processing time (e.g. getting cells from donor)
1 week in hospital to weaken, not eliminate, my immune system
next week outpatient, donor stem cells injected (one day)
3 months, heavy outpatient care, e.g. daily for at least first month
(need to stay near hospital during this period)
9 months or so, additional recovery time - can return home
result: complete cure (40-45% chance) - no further drugs needed

The goal of this Non-Myeloablative Allogeneic Transplant is that the donor's stem cells will take over my immune system.

There are all sorts of other scenarios such as taking drugs to stay as healthy as possible until a donor is found. If the first injection of stem cells doesn't take, they may try a second time.

The only cure for this condition is a transplant. Drugs are available that help but there isn't any evidence yet that they increase life expectancy. So, while risky, we're in agreement to pursue the transplant option. I'm adamant that quality of life is more important than longevity.

My brother Tony is not a suitable donor - not a match. Too bad. We knew there was only a 1 in 4 chance but we were hoping. He's upset that he's not going to be able to give me a hard time about all the pain and agony he "will go through" donating. So after all maybe I'm lucky that he isn't a suitable donor. :-)

The results of my latest blood test were almost identical with last month's test. This is good news since the current levels are not at a dangerous level.

We talked with my hematologist on the phone today. He is going to submit my name as a possible Stem Cell Transplant recipient (a more accurate term than blood marrow transplant) and start a search on the blood marrow donor list to see if there is someone out there that might be a suitable donor. He says that we need not start any medication at this time.

It turns out this may be a long process. While I may be meeting with doctors at Stanford Hospital soon and get started in their program, a transplant is not imminent. It turns out my blood levels are high enough that the risk of a transplant right now probably outweighs the potential benefit. So even if they find a potential donor, a transplant may not be done until my blood levels decrease even further. And maybe they'll even come up with safer treatment by the time I need a transplant. I continue to feel fine, although I'd like a little more energy. In some ways, I'm in a good situation. I can still do most things that I want to and whenever I don't want to do something I can use the excuse that I'm too tired because of my blood situation. Don't let Jennifer know that I have this convenient out!

On another front, we got a letter today from the administrator of our Kaiser plan saying that we are OK with Kaiser since we are in the 95033 zip code. This was in response to a letter I sent stating it seemed we are not eligible for Kaiser since we don't live in Santa Clara County. (Don't ask, it is complicated.) So since I now have something in writing to fall back on, Jennifer and I are proceeding with plans for a vacation from around Sept. 13 to around Oct. 15; the dates are still flexible. It will be a car trip that takes up to British Columbia and east across the Canadian Rockies. The rest of the trip is still TBD.

On a happy note, our son Vincent and Jonalyn had a fantastic wedding last weekend in Los Angeles. Their photographer has joined the 21st century and has posted a couple of wedding pictures in his blog at http://bandgphotography.com/blog/?p=26 . Check them out. Unfortunately they do not include a picture of Jennifer - she was simple stunning!!!

I trust most of you will recall I have casually mentioned that I have low blood counts, including red cells, white cells, and platelets.

About five years ago I had a blood test after about a gap of eight years (my fault for not seeing my doctor). At that time he noticed that my blood counts were below normal but not low enough to be dangerous. Nevertheless, I saw a hematologist who did a blood marrow test and lots of other tests.

No cause for the low counts could be found so no diagnosis was made. Both doctors have been keeping track of my blood counts with regular blood tests since then. The test results show that my counts have been steadily trending downwards.

A couple of weeks ago, my hematologist called and wanted to do another bone marrow test. The results of that test show some abnormality but no signs of cancer. This time they decided to put a name to my situation and gave me the diagnosis of Myelodysplasia which is a form of Myelodysplastic Syndrome (MDS). My hematologist has suggested that I aggressively pursue the option of a bone marrow transplant. Needless to say, this was unwelcome news. I am going to accept his suggestion and he is going to submit my case to the committee which reviews these. He is the head of this committee and expects this request to be approved. My brother Tony has already received a kit from Stanford Hospital which they will use to see if he is a suitable donor; there is about a 25% chance he will be. No other relatives have a high enough probability of being a suitable donor to make it worthwhile for them to be tested. Of course, it is not certain that a suitable donor will be found but I'm hopeful.

There are some drugs available that may provide remission but it seems that a transplant provides the only reasonable chance of a cure.

In parallel with this, I have met with a practitioner of traditional Chinese medicine and will also try this route which will mainly focus on herbs, teas, and overall diet. Meditation, Chi-gong, acupuncture, etc. are also possibilities. Hopefully I will see some positive results before I have to start taking pre-procedure medicine for a marrow transplant. (Actually, marrow is not transplanted but stem cells obtained from a donor are injected into the blood stream.)

As of now I'm still feeling fine, although I have noted that my energy level is down from a few years ago and it takes longer to heal. These, of course, are normal problems of getting older so I don't know how much to attribute to aging versus low blood counts.

It looks like we retired just in time. Now Jennifer and I will have the time to educate ourselves, try remedies, and get our personal lives organized. I do admit that I had anticipated this treatment recommendation as a possibility even though my retirement plans did not include it. I did know that my blood counts were on a downward trend and that someday they would have to be faced; I just didn't expect it this soon.

If you are interested in more information on MDS, check out http://www.mds-foundation.org/ If you are under 60 and interested in being added to the national list of willing donors (and willing to pay $52 to $96 to get on the list), check out http://www.marrow.org/ .

Date	White Count	Red Hematocrit	Red Hemoglobin	Platelets
9-Aug	8.3	29.2	10.0	66
Stanford "normal"	4.0 - 11.0	40.0 - 52.0	13.5 - 17.7	150 - 400

Myelodysplastic Syndrome A Bump In Life's Road

Myelodysplastic Syndrome
A Bump In Life's Road