Merry Christmas

For those who check this over the next week, have a Merry Christmas and a Happy New Year! I have included a in-line copy of our family's Christmas letter at the end of this post as well. Thanks to all of you for your support over the past year. I am not "out of the woods" yet, but certainly feeling the best that I have over the past 3 or more years.

I saw the Dr on Tuesday and don't have another appt scheduled for 4 weeks. In previous cases, I have not made it more than two weeks before having to go in for something, but I am feeling positive this time. One reason is that my hemoglobin is even higher at 14.9, up from the 13.4 that it was two weeks ago. The normal range is 13.3 to 17.7 g/dL. Actually, my red blood cell count is still low at 4.1 billion/L, though that has also increased from 3.61 two weeks ago. RBC normal range is from 4.4 to 5.9.

Unfortunately, my platelets are still down at 70. Normal is 150-450 million/L. This affects my blood clotting and makes me easy to bruise. At my next appt, they plan to run more blood test relative to antiphospholipid syndrome. This was my original problem when I had the pulmonary embolism (blood clots in lungs) three years ago. I still give myself a shot of Lovenox in my abdomen every day and have not been able to switch back to the little coumadin pill. White cell counts are in the normal range at 5.3. Importantly, my liver tests are normal and my spleen is only enlarged a little.

Here is the Christmas letter:
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Christmas 2007

Grace to you and peace from God the Father and from our Lord Jesus Christ. Amen!

Hope your family is doing well. Here’s a rundown of news about our family:

We are thankful that Joel is doing quite well after his bone marrow transplant last May. He is on long-term disability, so enjoys staying at home, working with his old computer collection and fixing things around the house. We have finally replaced the driveway, patio and garage door. Joel is also keeping up on his career technology and learning new programming skills through the Internet. For a weekly update of his health progress, please go to www.myelo.com.

Marilyn continues to enjoy teaching English Language Learners at Hayes Elementary School in Fridley. Each day brings new challenges, but she is thankful for her job and for her fascinating students with different languages and cultures.

Anna is working on her master’s thesis and plans to graduate from Harvard Divinity School in 2008 with a Master of Divinity degree. She and her two cats spent most of the summer living with us in Fridley where she enjoyed a glorious summer of doing nothing but spending time with the family, biking, reading and watching movies. She does not currently have definite plans for next year but is expecting the unexpected.

Andrew has been enjoying his first semester at the University of Minnesota in the College of Biological Science. He has been taking honors classes and has been doing well. He is still considering pre-med and is planning to major in biochemistry and chemistry. We typically see him a couple of times a week as he helps out with the youth group at our church, Redeemer Lutheran, here in Fridley.

Marilyn’s mother, Eleanor (93) has struggled with serious health problems this year and has been spending the last few months in the Camilla Rose Nursing Home in Coon Rapids, MN. Marilyn spends as much time as she can with Eleanor.

Unfortunately, our beagle, Velvet, died in November due to kidney disease. Our two cats, Moses and Zacheaus, have taken over her begging role and seem more affectionate as well.

May your Christmas be a Christ-filled one!!!

Love, Marilyn, Joel, Anna, and Andrew

More diarrhea

Everything was ok for 10 days and then I got another bout of diarrhea last Saturday. I had a Dr appt today, but could not produce a stool sample at the clinic. It has now been 12 hours since the last rush to the bathroom so maybe it is over. Dr wants me to cut back on milk and dairy products to see if that makes a difference.

On the blood count side, my hemoglobin was 13.4, about the same over the past three weeks and still in the normal range. My white cell count is also ok, but my platelets have dropped back to 72. This means that I need to keep taking Lovenox (blood thinner) injections. If it had stayed above 100, I could have switched back to coumadin tablets which I last used in April. Dr has also reduced my Prednisone and Levaquin doses so I am down to only 10 - 13 pills a day.

Otherwise, I feel pretty good. We have had snow twice in the last 4 days and I have shoveled a couple of hours each time. Yesterday, I even cleaned out my mother-in-law's driveway. I resurrected her old electric snowblower which had not been run for over 30 years, but then hit a piece of wood under the snow and sheared the auger pin. I fixed it this morning and will get back over there tomorrow to clean up this latest snowfall. My 25 year old gasoline snowblower has a frozen exhaust valve that I am also repairing.

Diapers

Things change quickly. At my Dr appt last Tuesday, I had good news about my bone marrow and hemoglobin. Then on Wed, I developed diarrhea. On three occasions before Monday, I didn't make to the toilet in time and had a mess to clean up. I called the BMT clinic on Monday and arranged for an appt at 1pm. Since I was running to the bathroom every 1 to 2 hours, I had to pick up some Depends at the local Walgreens and wear my first 'diaper' in over 55 years. Then at the clinic, the diarrhea held off for 4 hours though I was able to get the lab a stool sample before I left. When I got home the original 1 - 2 hour cycle started again. Seems like it might be easing off some today.

The Dr is concerned that the Graft versus Host Disease (GvHD) may be returning. That was diagnosed in July after I had lost over 50 lbs. I had some diarrhea back then but nothing comparable to this. I have a colonoscopy scheduled for Wed afternoon and have changed some of my medications. Now, I am essentially fasting and need to take 3 different laxatives and get an IV before the colonscopy. I still have an appetite and am looking forward to Thanksgiving dinner.

On the good side, my hemoglobin is still at 13.6 and my platelet and white cell counts are improving. The white cell count was 4.6 (in the normal range), but may have been responding to whatever is causing the diarrhea. Either way that is good since it is responding correctly.

5000 Served

Great news today. I found out that my bone marrow is now 87.6 % from my donor (brother), a big change from the estimate of only 30 % last month. This latest is direct from the biopsy that I had last week, while last month, it was from a blood test. It is possible that the blood test reflected destruction of cells by my old immune system. Anyway, it appears that the problem may be resolved since my hemoglobin was 13.6 today. This is a new high and actually in the normal range of 13.3 to 17.7 g/dL. Unfortunately, my white cell and platelet counts are still very low and I need to be cautious of infections and injuries. Every little bump now causes bruises.

Relative to this blog title, the BMT clinic was having a celebration today of having performed 5000 bone/stem cell transplants since they started with the (world's) first in 1968. I got some cake and a tee-shirt that says "What's in your marrow?" on the front.

Biopsy #9

I had my 9th bone marrow biopsy this morning.  The first was in Feb 2005 and I have had 5 since the first going into the BMT at the end of April.  I won't know the results until next week, but this was one of the easiest.  Each time, I have about three holes drilled in my hip bone, typically alternating between the two sides.  They need about 5 cm of bone marrow that is about 3mm in diameter.  Then they extract 3 vials of blood with a separate needle that does not use one of the marrow sample holes. These holes heal and form scar tissue which make it more difficult during future biopsies.  This was done under just a local lidocaine injection and  no other pain killer since I drove myself today.  It is the aspirate part that hurts the most because of the pressure change within the bone marrow where lidocaine has no effect.

On another note, my blood test today showed my hemoglobin going up to 12.4, the highest it has been since I started recording in June 2005 when I had my first blood transfusion.  For the record, I have had 46 blood transfusions and 93 units of blood, though only 3 and 6 since just before my BMT.  My white cell and platelet count went up a little today as well, though all blood counts are still below normal.  My CMV test from last week was also negative.  I look forward to getting the biopsy results next and seeing where I go from here.

Comment changes

I have been getting a lot of spam comments on this blog (145 just today) so have changed some of the setup. You will have to enter that funny character string and I will have to approve the comment. I have not figured out how to delete comments after the fact so at least this may clean up what you see.

As always, your comments and support are appreciated.

Looking up

I was surprised on Tuesday when my blood test showed that my hemoglobin was up to 11.4 from 10.4 last week. It had just been 2 weeks since it was 8.4 and I had a blood transfusion. Going in, I was feeling somewhat dizzy and tired, but surmised I may have been low on fluids and am trying to drink more. On the down side, my white cell count dropped from 1.6 to 1.4 and platelets from 88 to 64. Both are about half of normal though my Hgb is also still below normal as well. The Dr took me off of Acyclovir and Bactrim DS and reduced the prednisone to 40 mg every day.

I have my 6 month bone marrow biopsy on the 7th and the next Dr appt on the 13th. Hopefully, we will then know more details of how the engraftment is progressing. I had blood drawn for a Cytomegalovirus (CMV) test as well.

Other than that, I am feeling pretty good and getting things done around the house. I was also approved for Social Security Disability (SSD), though that payment will go to Aetna insurance to offset my long-term disability payments which are now being coming through. It is rare that anyone is approved for SSD on the first application and it normally takes 2-3 months for a response. I must have impressed them with my medical history.

Stable again?

I was into the Dr on Tuesday and my hemoglobin has stabilized at least for a week. After the blood transfusion a week ago, it should have gone up two points to about 10.4 and that is where is was this time as well. The transfusion was with A neg blood which may have affected the higher level as well. Since I am A pos, I can get blood from A or O, either pos or neg.

My white cell and platelet counts are somewhat low though which will also need watching. The Dr has adjusted my prednisone down a little and I have an appt again next Tuesday.

Other than that I am feeling ok. My son and I traveled to Chicago last weekend and attended a TI99 home computer faire on Saturday. The Chicago User Group sponsors this every year to share and exchange hardware and software for this 27+ year old computer. About 20 people attended with a few reporting from a similar meeting in Germany last month. There is an internet based user group of over 500 members to which I belong.

We went downtown Saturday night for Gino's famous deep dish pizza. We walked part of the Magnificent Mile shopping area, visited the Apple Computer store and paid $32 for 3 hours of parking. Sunday, we visited the Science Museum for 5 hours and then drove back to Minneapolis. Traffic in Chicago was terrible, taking us an hour just to get from downtown to the O'Hare airport area. I made it home about 12:45 AM and slept later in the morning.

Further setback

I was in yesterday for a blood transfusion and a further talk with my primary Dr. I discovered that my blood cells are now 30% donor (my brothers) and 70% my original. A few months ago it was reversed and supposed the change is in the bone marrow as well. In this light, the Dr has recommended that I do not go back to work on Friday.

I also met with my employer HR and health departments, who advised me that starting work on Friday would delay the start of my LTD payments. I would have to work 60% time just to offset what LTD will pay if I am not working. So, I will be classified as a "suspended" employee and will still be part of the company group plan as far as insurance benefits are concerned. I will be billed for my share of the costs and will have to pay those out of my LTD monthly check. There are also a lot of other benefit and organizational changes going on at work so I plan to let that situation settle down and consider going back to work in early 2008. Of course, there is no guarantee that my job will be there to return to. Hopefully, by then, my medical situation will be figured out as well.

Your prayers and support are still appreciated.

Flashback to April

Seems like I am back to my situation back in April. Though not scheduled for a Dr appt for another two weeks, I sensed that my hemoglobin was low. I was tired, out of breath with little exertion, dizzy spells and getting slight headaches. So this morning, I called in and arranged for a blood test this afternoon. Turns out that my Hgb was 8.4 and white cell count was 2.3, both the lowest that they have been since I left the hospital in late May. My platelets are up to 133, the highest since before my BMT.

So, I will be in for a blood transfusion on Tuesday and the Dr has increased my prednisone. I have been on 20 mg every other day and now moving to 60 mg every day. I assume that after this, I will feel pretty good again. I was approved for long term disability pay through insurance and await a response from Social Security. I am seriously considering going back to work 1/2 time to see how that works out. It will seem like April again, working with regular trips to Dr for blood transfusions.

Over the past month, I have been taking inventory of my old TI99 computer collection and plan to travel to Chicago for a computer faire on Saturday. My son will help drive and we will stay part of Sunday to sightsee as well. My first home computer was the TI99/4 in 1980. I now have about 10 spares, 150 cartridges and miscellaneous hardware. There were close to 500 different cartridges produced, many after TI discontinued the computer in 1983. My most recent addition was a newly developed hard disk interface with a 2GB HD. There is still an internet based user group with over 500 members, 50 of which will probably show up in Chicago.

Day 136

It has been a few days since my last Dr appt on Tuesday. My hemoglobin has dropped from a high of 11.5 on August 21 to 10.2 on Tuesday. Dr is still concerned about hemolysis (breakdown of red blood cells) but sees less jaundice in my eyes. He has added folic acid back to my medicine list. I took folic acid for several years, but stopped when I entered the hospital in May. I have also transitioned off the GenGraf and MMF, reduced Prednisone and started back on Bactrium. I am not sure if it associated but my appetite has reduced and taste has changed.

I have applied for both LTD (long term disability) from Aetna and Social Security Disability. I heard back from both about questions and their initial positive impressions. My short term disability from my employer ends on October 18th and, if approved, Aetna LTD would start October 28th. The SSD will take several months and will only offset part of the Aetna LTD. I will discuss possibly working part-time with my Dr at my next appt on Oct 2. The next month will be a time of some major changes either in my daily activity and/or income level.

Day 123 Changes

My health has still not settled down and changes are underway. I am still feeling pretty good though experienced some nausea, stomach cramps and diarrhea in the past week. I will probably be experiencing more as I back off some of the medications.

My Dr says it appears that the engraftment is going backward since we started the prednisone in mid-July. Recent tests showed that 30% of my immune system is still active, a JAK2 genetic test is now positive again and there is still hemolysis of red blood cells. It is a battle between the new and old immune systems and the current medications are fighting the new while the new fights my body. The old immune system was fighting my red blood cells as well before the BMT. A DLI (Donor Leukocyte Infusion) from my brother may be required as a booster for the new immune system.

Anyway, I will drop out of the Hutchinson study on the chance that I was really getting MMF and not the placebo. I will taper off of the GenGraf (cyclosporine) within a week and reduce the prednisone from 90 to 40mg every other day. I will also restart the Bactrium which was stopped back in July. Rituxan IVs are also a possibility. I am back to Dr appts every week and cannot go back to work until November.

My application for long-term disability is progressing well for possible start on Oct 28 while I also work on the Social Security Disability application. The way things are progressing, I may need both though still hope to be working part time by then. Your prayers are once again appreciated.

Day 115

These postings are getting further between since I have little to report on my health. Everything is pretty stable and it is two weeks between appointments now. My last was on Aug 28th so next is on Sept 11. My blood counts are good with hemoglobin staying above 11 (11.4 at last test). Dr is still concerned about seeing some hemolysis so it should be higher. They are also watching my urine since some blood and protein were noticed a few weeks ago. I have now reduced my prednisone to 90mg every other day from the every day when I started on it.

We made it to the lake cabin near Bemidji the week before last. It was a nice trip though I could not do a lot that I would have liked to. We did have to cut up a large tree that had fallen across the lane. Just fun to be there with the whole family.

I made it to church again yesterday. It was the first day of the month and communion. It reminded me of the blood and body of Christ being similar to the blood and bone marrow received from my brother. Together, they make a miracle of extended life on this earth plus external life after that.

BMT + 100 days

Actually my 100th day since the bone marrow transplant passed a few days ago, so I have made it pretty far since entering the hospital on May 1. I had my 9th bone marrow biopsy on Thursday when they tried some new needles which seemed to work better. My biggest problem with the biopsy is lying in a cramped position which affects my arthritic knees. The quicker it goes, the better. I get some results back on Tuesday but don't expect any surprises.

I am feeling much better the last couple of weeks and am starting to get out. Did some shopping for a car battery and carpet for our washroom. Dr says I can stop using the mask and go to church on Sunday. Hope to see some of you there. We also plan to take a trip to the cabin in Bemidji next week. This will be the first time for me since Andrew and I were there in April and saw the ice go out. All of my care givers go back to teaching or attending school in a couple of weeks, but I am getting pretty independent and now driving as well.

While I am proceeding with applications for long-term disability and social security, I may be back to work before mid-October. Still need to taper medications and see how I react to the changes plus build up my endurance. A short trip out shopping or working around the house still tires me out. Still need approval from the Dr before going back to work

BMT + 3 months

It will be three months tomorrow since the first day of my BMT on May 8th. Besides the GvHD which seems to be coming under control, I am feeling pretty good. I have stopped losing weight and starting to gain again. Due to the prednisone, I have an appetite, somewhat uncontrollable. I am starting a taper of the prednisone from 90 mg every day to 40 mg on alternating days. I have little nausea and normal bowel and urinary functions.

My blood counts were all within reason today though platelets and hemoglobin are still a little low. I did not need any fluids today, but there is still a question about a possible blood infection. So for the first time since May 2, all tubes have been removed. The PICC line that was put in several weeks ago was removed so next time they will start picking me with IV needles again.

But for the first time, I don't have an appointment for a whole week. The Dr says that I can even leave town and travel to the lake cabin in another week. Possibly in a couple of weeks, I can get out in public as well. It all depends on how things improve further. I did make it to the neighborhood party this evening though wore my mask and did not shake any hands.

35W Bridge

Just a note that we are all safe after the collapse of the 35W bridge yesterday. We had many calls from relatives since we drive close to it for every doctor appointment. We drive down either Washington Ave or University Ave near each end of the bridge though rarely cross the 35W bridge itself. Just last week, Anna and I drove across as we detoured to stop at the Dinkytown post office. Now have to contend with detours on the Washington Ave side from I-94. Our prayers go out to all the affected families.

I just got back from an appointment where things are going better still. Got some more fluids and they took some more blood cultures to check on the previous infection. I am back on GenGraf since my kidney function has improved and will start a taper on the prednisone next week.

GvHD + 84

Only 9 days since last posting so doing better with only 4 appointments to report. Still battling potassium and creatinine levels in my blood, indicating possible kidney problems. So I get IV fluids on each visit and need to keep drinking more water. There have also been more adjustments of medicines to help out. The prednisone is helping my appetite, but I still don't have my taste buds back. I have lost a few more lbs so my gut is probably not absorbing enough yet as well.

As part of the GvHD treatment, I am participating with a Fred Hutchinson Research Study where I either get MMF or a placebo along with the normal treatment. This is another 8 pills a day, though they could be what I took during the engraftment phase. This study could last up to two years and is meant to determine whether MMF helps in the GvHD phase. Note that the study is not listed at the web site so may be closed to participating research groups.

Not sure when I will be back to work. Earliest may be 2 months due to immunity problems and need to stay relatively isolated from people. Otherwise, I am feeling much better and getting things done around the house.

Hospital again + 75

Sorry that it has been almost 2 weeks since I posted. The week of 10th, I was into the clinic everyday and couple unplanned to get fluids. Most of the tests were negative for GvHD except for the D-Xylose test that I had last Tuesday. Just got results back today from Mayo Clinic and it definitely indicated GvHD. I am now on 90mg Prednisone per day and added CellCept back for treatment as well. Got to drop Ursodiol but added 4 "horse" tablets of Bactrim each day.

Also the clinic had taken blood cultures for several days starting the 13th. They got the first results back on Tuesday (after I got home from a day of D-Xylose) and had me go straight to the hospital. I didn't feel too bad but Drs were worried since it was a very septic infection in my blood. On Wed, they pulled out my central line and ran cultures on that as well. On Thurs, they ran a PICC line which accomplishes the same purpose as the old central line. It hangs out of my right bicep area down to my elbow, dangling frrom under any short sleeve shirt. I got out of the hospital about 1pm on Saturday and was back at the clinic at 8:30 this morning. Already have appts for Monday and Tuesday and probably more this week.

It is good to have some confirmation of why I have not had an appetite and I have lost weight. Official weight from this morning was 197 lbs, 70 lbs less that my bloated high back in May and 55 lbs less than when many of you saw me last.

Thanks for all your prayers. Last Monday, after my sister came back from a 2 week mission trip to Brazil, we had a family prayer meeting at my house. Little did we know that the blood culture test that may have saved my life was already underway. Just a few days later and results could have been much different. God works in mysterious ways.

Day + 63

Well, I went down hill after Friday and had to go into clinic on Monday for some more magnesium and fluids. This helped me some but now I get more blood on Wed. I saw the Dr again today and will again on Thurs.

Other than hemoglobin, my blood counts are ok. Dr. also reported that my last bone marrow biopsy looked good with all cell lines growing well and still showing engraftment. Since none of the tests confirm any acute GvHD, the Dr ordered a lip biopsy which was done this afternoon in the Dermatology Clinic. They took a piece of salvia glnd from inner lower lip and a sample of some flaky skin. They also examined my whole body for anything suspicious.

Dr. thinks that I may have chronic GvHD which normally occurs after 100 days. If it is cGvHD, treatment would probably be Prednizone and could continue for several years.

Day + 59

What a difference a few days make since I have been feeling much better since Tuesday. This was somewhat tempered by getting up early this morning and having both a sigmoidoscopy and another bone marrow biopsy. I still have little appetite but diarrhea and dry mouth have let up.

The initial sigmoid test was negative for GvHD though samples were taken to be analyzed. Other tests of stool, urine and blood culture have also been negative. Blood counts are ok except for the hemoglobin which keeps dropping. I am also now taking eye drops for dry eyes.

The bone marrow biopsy went very well this morning, taking 1/2 the time of the last. The difference was experience of who did it and use of a bigger (8 gauge) needle. I have my next Dr appt next Tuesday when I will learn more from the biopsies that I had today.

GvHD, in answer to Lori's question on the June 12 post, is basically when the new donor white blood cells attack rapidly growing host cells. This is beneficial when the the attacked cells are remnants of previous cancers (tumors). It it not pleasant and can be life threatening if the cells are GI tract, lungs or liver. Skin or eye GvHD can also occur.

For Joyce, my top rating on fireworks, viewed on a 46" HD TV, is for Boston. Of course, the only other one I watched was New York. NY was 30 minutes long and seemed to be launched from a broader location. Boston was only 20 minutes and seemed more concentrated. Both were choreographed to music, but you can't beat the Boston Pops Orchestra for smooth medley transitions. I especially liked the Sesame Street song synched with fireworks in the shape of a toy block or the numbers 2 and 3. NY synched those with "Take me out to the ball game". Over all, I would have much rather been with my son and daughter in Bemidji, watching their fireworks from the beach.