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.

Day + 56

Well, the GvHD question is open again. I was in for an appt this morning after generally not feeling too good the last few days. I have been fighting bouts of diarrhea on Sunday and Monday, but am thankful clear at the moment. Didn't sleep very well last night because of dry mouth.

My creatinine has been high due to the diarrhea and lack of kidney function so I still try to drink at least 8 cups of water a day. I essentially have no appetite but try to eat a variety of food, never able to finish even 1/2 a normal portion. The clinic gave me more magnesium and fluids IVs today. I was told to come in Thursday as well if I have more diarrhea and dry mouth.

Any way, I had a stool sample, a urine sample, and a chest x-ray plus special blood cultures taken. X-ray was ok; no fluid in lungs. I go in Friday at 7:30am for a sigmoidoscopy followed by another bone marrow biopsy. I also had a Schirmer test for dryness in my eyes. This is done by placing a piece of paper under the lower eye lid and measuring how many tears are produced.

I look forward to my July 10th appt to get the results of all these tests and determine what we do next.

Keep looking up!

Day + 51

I was to the Clinic twice this week, once on Tuesday and then today. On Tuesday, we learned that the endoscopy showed no GvHD in the upper GI tract but I was still having some diarrhea so I was told to obtain another stool sample. My hemoglobin was down to 9.1 the lowest it has been since before the BMT. My creatinine level was very high reflecting lower kidney function so I also received some IV fluids while at the clinic. The Dr also dropped the GenGraf for a few days and lowered the Acyclovir.

So today I received 2 units of blood (rbcs) and some more magnesium. My creatinine was down and I have had little diarrhea so was not able to get a sample. The Dr has now restored the GenGraf at a lower level and the Bactrium which I also did not take this week.

I was tired due to the low hemoglobin the last few days but my digestive system seems a little better. We are in a period of balancing the side effects of the medicines versus the benefits. Drs say the fluctuating hemoglobin is still ok this early in the recovery, but I worry that my old autoimmune system is still in effect.

Hope to learn more next week after another bone marrow biopsy on Friday July 6 plus a regular appt on Tuesday July 3. There will be no time off on the 4th for me; I will be here popping about 30 pills a day.

Day +45

This is my second report this week in only four days. It has been 45 days since the BMT and possible GvHD is still under investigation. The stool sample from last week was negative, but the results of endoscopy on Tuesday were less certain. I will get a final report on the endoscopy next Tuesday.

I still don't have much appetite and feel nauseated after eating and taking all the pills. I am still fighting diarrhea and urination every hour. I was supposed to have a Dr appt today, but felt weak and tired yesterday so went in then instead. My hemoglobin was 10.7 so no transfusion was required. I did get a liter of fluid while I was there and feel a little better today. My next appt is on Tuesday

Day +41

Hopefully, I can get a status post out more frequently, but it seems like weekly now. It has been 41 days since the BMT and I may be in a GvHD phase now. Last week, I had three appointments and spent over 14 hours at the clinic. Thursday stretched out with a decision to give me fluids and a blood transfusion. My regular Dr is on vacation so the PA thought they could get the blood in before we left for the day. The blood bank reported back that they still needed more time to match my blood because I still have the extra antigens that existed before the BMT. It is unknown whether those will be eventually cleared up. So we were back in on Friday for another 4 hours. Both the fluid and blood have perked me up some over the weekend

There have been no results of the stool sample from last Thursday and I have an endoscopy scheduled for tomorrow. Both of these should answer part of the GvHD question.

GvHD + 35

Sorry for the delay in posting but things have been pretty boring. Each day seems like the next, but today may be the start of a new phase. I have been tired recently, napping several times a day or falling asleep watching television. I now see the doctor about twice a week and am gradually reducing medication (now down to about 30 pills a day).

After a shower this morning, we discovered a rash on the inner side of my right thigh. Doctor also ordered a stool sample which I must deliver on Thursday. There has also been some talk about an endoscopy to check my digestive tract. I am still having problems with nausea and lack of appetite and have lost over 25 lbs from what I weighed before checking into the hospital on May 1.

It has been 35 days since the BMT and I am thankful that the new bone cells have engrafted and not all my hair has fallen out. Now it looks like the negative symptoms of GvHD have started.

100% Donor cells

The results of my bone marrow biopsy shows 100% total donor engraftment. The doctor even seemed surprised when he pulled up the results on the computer this morning. This means that my brother's stem cells have taken over and eliminated my old defective bone cells. My hemoglobin reached a high of 11.9 and platelets have increased from 51 to 79 in the last 6 days, more evidence of the new cells. On the negative side my magnesium was down so I needed an infusion today and my creatinine is up to 1.68.

The challenge now is to manage all of the medicines to prevent GvHD (Graft versus Host Disease) as well as getting my normal digestive functions back in order. My weight was 235 lbs fully clothed this morning versus about 248 on check in to the hospital and 266 with the fluid retention and hospital gown. With all the pills and diminished taste and saliva, I still cannot eat normally and feel nauseated most of the time.

But isn't God great! He guided me through the valley of the shadow of death and will continue to heal the rest of my body.

BMT + 25

Well, its Saturday and I did not have to go to the Dr today. Yesterday, the Dr said that everything was normal, at least as good as expected for me at this time. My hemoglobin and platelets are still below that for an average person, but still where they should be for a BMT patient. Of course, as long as I am taking all these pills, it is a propped up normal. They gave me more magnesium on Thursday but did not need to on Friday. I get the day off tomorrow as well.

The negative of not going into the clinic is that we have to flush my central line at home. Andrew did it this afternoon, but I was a little nervous.

On Friday after my appointment, one of the clinic Drs asked me to talk to a patient who had completed a week of tests to qualify him for a BMT, but was still not committed to moving ahead next week. This young man discovered he had myelofibrosis last Sept. He has an unrelated donor, but is getting a mini-BMT similar to mine. I related my experiences and directed him and his wife to this blog for further details. I also suggested that they setup a CaringBridge site. I gave credit to God and the power of prayer. Please pray for Keith as well since he decided to move ahead with the BMT.

BMT + 22

Today was another long day at the BMT Clinic. I forgot to mention yesterday that I had a chest x-ray which the Dr said today showed fluid on my lungs. He ordered an EKG and an echo cardiogram which I had this morning. He wants to rule out any heart problem that might cause the lung fluid retention. We won't know results until tomorrow.

I also had an infusion of 4g of magnesium today. That's the equivalent of 10 pills. I am now taking 4 pills a day at home. These two seem to be the major issues for the moment while we wait for results from the bone marrow biopsy.

With travel, we were away from home 6 hours and then behind on medicines. My wife drove me home and then had to pickup my daughter (backup support) at the airport. Tomorrow, my son graduates from high school while I watch on cable TV. Sunday afternoon, he has a party at church while different family members take turns visiting with me about 1/2 mile away. It is great to now have both daughter and son to help in the home care. My wife returns to teaching school for another week. I feel like a king in my throne (recliner) while people do things that I cannot do. Most are things I could do, but need to minimize exposure to germs.

BMT + 21

It has been three weeks since the the BMT and 4th day home from the hospital. It was Bone Marrow Biopsy day, the sixth one that I have had. This one was the longest and most uncomfortable because of my position on my nauseated stomach for over an hour, plus numbness forming in my neck, hand and feet. There is a a lot of scar tissue in my hip bones and it is getting more difficult to get a good sample. They had to drill into my hip bone three times. The pathologist who is going to examine the marrow did the procedure so we know he got a good sample.

I also had another platelet infusion as a precaution against bleeding. It is still uncertain whether the BMT will also cure my anti-phospholipid syndrome problem. blood counts were about the same and I lost another 2 lbs of fluid. From the max of about 20 lbs fluid gain, I have about 4 left to lose.

I take about 49 pills a day plus one injection. The cyclosporine (GenGraf) was reduced from 250 mg to 200 mg twice a day. I take pills about 6 times a day, trying to eat some before each session.

At home

It is great to be at home and my condition has improved. My creatinine level has decreased some more to 1.49 while my hemoglobin has increased to 11.1 probably the highest in 3 years. White cell count is up a little in normal range while platelets are still struggling at the low end. Most importantly, my fluid retention is decreased and I weigh about 6 lbs less than when I left the hospital, but I still weigh about 6 lbs more than when I checked in.

I keep feeling better and eating better every day, but still feel nauseated after eating just a small portion of food. Taking all the pills don't help either. My taste buds, saliva generation and smelling still have not fully come back.

My wife and son are great support with all kinds of little supplies to buy or find for me. The brake light on the van and the ceiling light in the bedroom burned out. The furnace filter needed to be replaced. The lawn needed to be mowed and plants watered. A lot of things that I cannot yet do myself.

Going home

Groundhog Day is over. It is the first day of Summer. My creatinine level is down and I am going home. My wife is working today and there is a lot of follow up work to do here, so I will not leave until 5pm.

I still need to get a list of everthing to do at home and all the supplies and meds from the hospital discharge pharmacy. It will be great to sleep in my own bed, use my MacBook Pro laptop with the 20" LCD monitor and watch my HD wide screen TV while lying back in my recliner.

Each of the last three days, I have lost hair while taking a shower. The picture above was just taken with my laptop camera and shows the current state. Seems like the dark hair has fallen out and I am left with the grey. I am also still shaving so maybe I will retain some hair on my head.

I will still be coming into the clinic every day and updating my blog, so check back. I appreciate all of your prayers and support over the last 25 days while I have been here at the hospital.

Groundhog Day 2

I will be here at least another day. My creatinine dropped only from 1.9 to 1.8, not enough change to let me go. They are putting me back on a reduced dose of cyclosporine (GenGraf) and will reevaluate again tomorrow. I have also had about an hour of magnesium IV each day.

More hair fell out yesterday when I showered, but still have enough to say I am not bald. I shaved again this morning so that is still growing. To bad that I cannot switch those two.

Groundhog Day

It feels like Groundhog Day, the movie. where Bill Murray keeps experiencing Groundhog Day over and over.

As I speculated, my Creatinine level, which indicates kidney function, is too high this morning. Creatinine went up from 1.68 to 1.94 and needs to be going down before I am discharged. They are stopping one medicine to counter GvHD for the day to see if that affects it. Otherwise, we repeat yesterday and see what the Creatinine is tomorrow. So I will be here until at least 5pm on Thursday.

Other blood counts are up slightly, which is good and shows bone marrow is functioning. Another bone marrow biopsy next week will show whether it is my brothers bone marrow. But the fact that Hemoglobin has been over 10 since May 11 is a good indicator.

BMT + 14

Situation today is similar as it has been though I have lost some fluids and weight. My platelets were down to 77 today, but white cells and hemoglolin are holding their own. Creatine was up slightly and again may be the deciding factor of whether I go home on Wed. All of these are be adjusted with other drugs at home as well as here. I do feel better today and want go home where I can get more exercise which will help to lose more fluid. I will be back to the BMT Clinic everyday for blood tests and further IVs if necessary.

I took a discharge class this afternoon and should know by about 11am if I will be discharged. It will be a day to day basis of review and decide. My wife is prepared to take days off from teaching, but would work a full day and I would leave here about 5pm.

My hair is falling out and thinning. Today, while taking a shower, it was coming in gobs, but doesn't appear too bad. I am not bald yet.

The physial therapy department signed off on my discharge after session with them this afternoon.

BMT + 13

I had a pretty good night for sleeping last night, though up every hour to the bathroom and up at about 5 AM to write instructions for cleaning the house before I come home. Then about 8:30, I had my breakfast of 16 different pills. My planned breakfast came about the same time as the pills, but I needed to get the pills down first. I was still water logged and weighed in at my highest of 121 kg, almost 20 lbs more that when I checked in 3 weeks ago. The major concern now is my fluid retention versus the health of my kidneys. My creatine level is up to 1.52 so any diuretics were stopped over the weekend.

I was not able to eat much breakfast, needed to walk and excercise, but did not have the energy. The fluid retention was still restricting my lung capacity and breathing. I was just laying around, feeling sorry for myself, getting up for the bathroom when necessary. Then, my sister, my younger brother and my older brother (the donor) called is succession. Being just uplifted by their calls, an angel from physical therapy showed up to help me walk and exercise.

Since she was following the book, she offered me either a cane or walker, like waving a red flag in front of a bull. Previous times I have pushed the IV pole around, but didn't need to take that with us. Unencumbered, I took off while she followed with a back up wheelchair which I needed to use 3 times to catch my breath. I walked up and down 13 steps on the stairs with no problem, proving that my problem is oxygen input. The paper mask, which I need to wear, also restricts my breathing. We also whipped through some of the physical excercises with no problems.

In the previous writing, I skipped the fact that all my meds have been switched from IV to pill form and the nurse disconnected all IVs just before my physical therapy. I also received a diuretic about the same time, so have passed a lot of fluids today. I feel that I have passed the hurdle of fluid retention and may be able to go home in a few days. Food tastes better, especially the Ghirardelli chocolate and and Code Red Mt Dew that I had this evening. I am having 3 BMs a day so that end is working as well. My wife, son and I attended a central line maintenance class this afternoon after which I took a 2 hour nap which was te best sleep that I had since coming in 3 weeks ago. I expect more of the same this evening.

My labs show that my hemoglobin has been over 10 for the past week. My white cell count is back down to the 3000 range. My platelets are back over 100 so I am back on Lovenox, a blood thinner. The Lovenox is a precaution until the Drs determine whether the BMT solves my blood clotting problems. Tomorrow's labs, including creatine, will be interesting to see and will be a big factor in when I go home.

BMT + 12

Last night was my best yet for sleeping, though the heat went out. Rumor is that a major boiler failed. It was down to 66 degrees, but now warmed up to 72 now. I try to keep it set at 68, but thermostat does not control very accurately, plus the air filtering system keeps a constant airflow in the room. I sleep better when it is cooler, but I also had less noise because of less IVs. Docs are changing from IV meds to pills. Seemed like only one was running last night. Less IVs also mean less fluid retention up and less urination.

My platelets are also higher so I go back on the Lovenox anticoagulant. If I can get rid of the fluid and get an appetite back, I may be sent home this week. Then my problem will be care giver support at home and daily BMT clinic visits since my wife works until June 7 and my daughter and son will not be out of school until May 30.

BMT + 10

This is the 17th day since I checked in the hospital for related donor mini BMT. Doctors tell me that I am doing very well. My white cell count is up more to 3200 and my hemoglobin is at 10.3. My platelets are 53, still too low. I will get more platelets today. Certainly, the nausea, lack of energy will continue, especially after 4 therapy sessions planned for today.

Update 8pm - Around midday, just after the Dr parade passed through (and talked with Lavelle), I noticed numbness in my toes. I could hardly stand due to pain in my ankles which were swollen due to more fluid buildup. I have had more diuretics and am now wearing support hose, just like my mother needed in her later years. The therapy sessions are a help by improving my circulation. [A nurse told me about another potential solution that another male patient used. Picture the combination of Depends held up by suspenders.]

I feel great at the moment, just wondering what is next. Probably, hair loss? I have not figured out what this means for the long term, but will sure have much more sympathy for people in pain or the latter days of their life. Quoting Richard Bach, "Here's a test to find whether your mission on earth is finished: If you're alive, it isn't." Credit given to Kirk Weisler, Chief Morale Officer.

Day +9

Sorry for not posting for 4 days earlier, but I have just not the energy, plus they keep me busy. I have not had an appetite and then have had nausea most of the time. I seem to be breaking out and forcing myself to eat despite the taste. I gained at least 15 lbs of fluid and then have to take diuretics to get the fluid.

Guys, specifically, the fluid goes "everywhere" and can be very uncomfortable. It also seems that I have a urinal strapped to each hip. I have tried many setups, buy decided the best strategy is to dress lightly for quick release and always have a urinal close by. Sorry to say, I was slow on the draw a few times.

I got out of my room for some physical therapy today. Will have to walk around and do some exercises 4 times a day. Seems like they are trying to get rid of me, but just preparing for going home some time around May 30. My white cell count is up to 2200, about 1/2 of what is was when I came. Platelet count is 46 and I received another platelet infusion this evening.

Keep looking up.

Day +5

Sorry that I have not posted recently. My wife and brother have been keeping up better on the CaringBridge site. Everyday something changes, but in general I have a bloated feeling of indigestion. One day I also had Premature Artial Contraction, which the heart Dr told me not to worry about. This morning I had shortness of breath and was given a chest xray. I have also gained at least 12 lbs, which must be in fluid so they have started more diuretic. So I am know tied to a minimum of three tubes and then have to jump up to get to the urinal. So far I had no diaherra but that have been some quick calls through all the tubes and power cords to get to the toilet.

The drugs are now to prevent or fight infections and to head off Guest vs Host Disease (GvHD), but they all cause nausea. So far I just had one bout of vomiting, which was lite after one bite of sugar cookie and some water. I lay in bed listen to the tv, radio or CD and then fall asleep, waking in the middle of something else. Hours run together and I sometimes am not sure which reality that I in.

The doctors are all reassuring and say I am experiencing what most other patients do and that I am doing very well. As my brother said recently (Psalms 23) "He makes me lie down... he leads me. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me." When I think out to all my support group, including all of you reading this, praying for me, nursing or doctoring or communicating , "Surely, goodness and mercy will follow me all the days of my life"

Day 0 BMT

I have a few rough days where I did not even think about posting my status. My wife posted on The CaringBridge site and I have yalked to many of you and appreciate all of your thoughts and prayers.

The first part of the BMT took place this evening after my brother donated his stem cells earlier. He said that they only harvested about 80% of what they needed so will be back tomorrow. The first transfusion has caused no side effects yet and I am feeling pretty good. I survived a bout of premature artial contractions yesterday and more nauusa today.

My family had a prayer service for me from 5 to 6pm today while I listened to a great CD from an angel at our church. People from all around the world were praying, even people of Brazil. I could feel the power of God taking holding the BMT. It is the start of a new life, a new birth. That it continues tomorrow is even more symbolic. I am 59 years old on 5/9.

Status Day -4

The process is still being pretty good to me. I have survived the worst of the chemo without nausea, but expect that as it reaches its goal of wiping out my immune system, the worst is yet to come. I have great support from many people; family, church, work and old friends. I cannot remember all the prayer chains that people have told me about. I have had six visitors today. I sincerely appreciate all of your support and my prayers go out for you as well.

My brother, Jim, stops by every morning after his growth factor injection at the BMT clinic. It will be interesting to hear from him in the morning about any pains from his bone marrow responding to the stimulus. It is great to visit with him, one on one, after years of just seeing him at special occasions, mostly with other relatives. He used to ride me around in his bicycle basket when I was young, but left home for college when I was 8. I lived with his family for a year while I was going to college. His strong faith and devotionals help to uphold me through these trying times. See the CaringBridge website in the sidebar.

Seems like everyday, I get a sign from God that he is still watching over me. For example, just I was typing this and listening to KTIS radio, a Newsboys' song, named "Something beautiful", started playing. The first words of the song are "I want to start it over, I want to start again. I want a new beginning, one without an end. ... It's the voice that whispers my name. ... Something beautiful." We saw them in person at the Target Center last Fall. As I checked my iTunes music list for my Newsboys album another song was at the top of the list, "Everthing is going to be alright".

Yesterday, I was visited by a total stranger who appeared something like angel in my room. She was distributing a care bag from the Care Partners and Club Butterfly of the Children's Cancer Research Fund. Inside the bag where many little snacks, reading materials and even a pre-paid calling card that I used last night to call my younger brother, Bob.

But the one thing that caught my eye was a butterfly pin on a card with the saying "From the cocoon of treatment and isolation, a child emerges - beautiful and ready to take flight. The butterfly is significant to me since back in 2001 as I reported on my Story2tell web site. Again when in the hospital in 2004 during the first days of my current ordeal, my friends at work sent me flowers with a butterfly as part of the arrangement. I will come out of this situation as the butterfly does out of a cocoon, either renewed for further life and purpose here on earth or in a totally new heavenly body.

Now, "Just the facts, Ma'am" as Joe Friday said. My Hgb was 9.3, expected up since I got rbcs yesterday. Platelets up some to 155 up some probably due to the Anagrelide wearing off. I did not see a reading on white cells, but expect that to drop as the treatment continues. They will give me more rbcs and platelets to keep me alive while giving antibiotics to prep for any infections that the wbcs would have taken care of.

Sometime in the next two weeks you may see what I look like bald.

Status Day -5

Today is going fine after a night of light sleep. I received an ATG IV starting at midnight accompanied by more Lasix. I was urinating every 30 minutes. Then they took my daily blood tests at 4 am so that the doctors have results in the early morning.

My Hgb was 8.0 today so I am getting a blood transfusion. Still just red blood cells, but they will have to transfuse platelets later. Platelets have dropped to 133 from 272 when I checked in. Platelets have an average lifetime of 10 days and the chemo is wiping out their source as well.

Not enough blood had been drawn for a correct type & cross, so they had to take 4 more vials of blood. The blood bank would have caught the need to check for the other antibodies that I have, but I asked my nurse to check before it would be delayed even more.

This is day -5, only 5 days to go before the BMT. My brother is in town and starts his treatments to build bone stem cells tomorrow. He came to visit this morning as did the assistant pastor from our church. I appreciate everyone's support.

See the new picture of my central line with clear bandage while referring to a previous description of the procedure.

Chemo going OK

My chemotherapy is going a lot better than I thought it would. After all of the chemo I mentioned earlier, I have not had any nausea. My biggest problme has been the constant need to urinate due to all the fluids, IVs and Lasix. Then with the ATG (horse serum), they had to monitor me almost continuously the first couple of hours. When I had to rush to the bathroom, I was tangled up in all the blood pressure, finger cuff and temperature lines. I finally just got a couple of extra urinals to keep by the bed so I did not need to get disconnected and reconnected each time. I am still getting a slow dose of ATG, but the next one at 11 pm will be speeded up since I have tolerated that as well. Now just waiting for my hair to fall out.

My wife said the picture that I posted last time was pretty grim, so I have attached a better one. I really am in good spirits. This picture was from from last using the Mac PhotoBooth distortion capability.

Chemo Started

I had a pretty good night of sleep interrupted occasionally by bathroom needs, vitals and then labs at 4 am. Then I was awaken by the sunrise since my room windows face the east. I showered, ate breakfast, had my central line dressing changed and donated my weekly cultures of stool, urine and mouth swab. They have been giving me fluids and measuring all my outputs. My hemoglobin is 8.4 which is low considering that it was 9 on Friday when I got a transfusion. By my history, it should be close to 10. Nothing to worry about since they monitor everything closely and I will get more blood whenever it is needed.

The nurse just started the first chemotherapy called Fludarabine which I will have for a hour a day for five days. The side effects are not too bad, though the nurse put on a special gown and wore rubber gloves to protect herself in case she spilled any while hanging the IV. In an hour, I start on the Cytoxan which is supposed to be the worst as far as nausea but that is a one time 2 hour dose. Then, I get Allopurinol for 6 days. I also get ATG (Anti-thymocyte globulin) and MP (Methylprednisolone) for 3 days.. The first three supposedly kill off most of my bone marrow while the last two suppress my immune system. All this is subject to review and change as the doctors monitor my reactions and condition. The regimen is called a mini-BMT, not a full BMT. They do not eliminate all of my bone marrow, but weaken it so that my brother's donor cells can take over.

BTW, I have better wireless access (5 - 7 mbps so far) to the internet here than I have through my wired access through ComCast at home. Time will tell how the speed holds up.

Central Line

I have checked into the hospital after getting my central line put in. It took a couple hours of paper work and vital signs before they started the procedure and then about a hour to complete. I was settled in my room by about 4 pm.

Priot to starting the procedure, they shaved my chest, but did not do a wax. It may be hard to see in the photo (that is reversed left for right by the camera on my laptop), but there is an incision up my my neck above the jugular vein on the right side. This area was numbed up with lidocaine, a needle was inserted and then a wire that went down towards my heart to measure the distance. A "straw" was inserted over the wire to hold the jugular vein open. Then about 4 inches lower, an incision was made and a tunnel made through the fatty tissue up to the other incision. A rod was pushed through attached to the catheter which was then pulled through. The catheter was inserted through the straw into the vein and the straw was split and peeled back like a banana. The catheter was pushed further in towards the heart and the upper incision was glued shut.

That is the place that is hurting this evening since whenever I move my head it tends to stretch the skin in the area. A stitch was placed around a little cuff on the catheter just where it exits my chest. There are two lumens that can be used for blood draws and IVs. The catheter has a divider inside for its full length. The red one is used for blood draws like the 14 vials of blood they took out when I got to my room.

My wife was with me all afternoon except for the placement of the catheter. My son rode his bicycle down to the hospital and back later, a round trip distance of 20 miles. We took a tour of the BMT ward and then walked about three blocks outside to Sally's for a cheeseburger. I have been back in my room for a couple of hours. I am feeling pretty good so far, but the chemotherapy starts in the morning.

Thanks for all of your comments and prayers. I really appreciate everything you are doing. By the way, do not send any flowers which are not permitted in the BMT ward. If you wish to call, my phone # is 612-273-0205. Cellphones cannot be used on the ward. If you wish to visit, I am in the BMT ward 4B, room 221. It is probably best to wait a few weeks though since I will probably be pretty miserable over the next week and susceptible to infections after that. Surprisingly, they do permit up to 3 visitors at a time, but make you wash your hands and wear a mask if you have any sniffle.

It's a Go for BMT

I just got word from the BMT Clinic that the BMT is moving forward. Both my brother (the donor) and I have been given a clean bills of health. I check into Fairview University Hospital at noon on Tuesday and have a central line placed at 1:30 pm. Chemotherapy to wipe out my old bone marrow starts on Wednesday. I have radiation on Monday and then receive the BMT on Tuesday, next week.

I went to work this morning for a few hours. Cleaned off my desk and filed a few more things. Then came home home and mailed my last Health Care Reimbursement Request for the year. There is plenty of things I need to do around home, but I think I will take a nap for a few hours.

Transfusion #42

The last thing I did at the BMT Clinic yesterday was to get a blood test with type and cross for a blood transfusion today. Since I was now at a different clinic, I had to convince the lab technicians that they should take more vials of blood for the blood bank to match the extra antibodies that I have in my blood. I worked about 3 hours this morning and called the clinic to confirm that they had the blood for me. Again, I had to insist that they check with the blood bank to assure that they actually had the blood. So when I got to the clinic at 12:30 pm, I knew the blood was waiting.

But the nurse told me that they could not give me blood because my hemoglobin was at 9.1 yesterday and not below the 9.0 level the doctor had ordered. Again, I insisted that they check with the doctor since my hemoglobin was probably already below 9.0. I even pulled up my history of hemoglobin change on my laptop, showing that my hgb dropped at least one point per week and would be too low by the time I entered the hospital and they got me blood next week. I didn't need to talk to anyone else before they took me to a new area for the transfusion.

The first nurse tried two times to get the IV inserted and then passed responsibility over to another who did it on the first try. The BMT Clinic seems to transfuse blood at a faster rate so I was finished by 4pm just in time to stop by the pharmacy to pick up some Lovenox. This was my 42nd transfusion and 85th unit of rbcs.

In preparation for insertion of the central line on Tuesday, I need to be off of my Coumadin blood thinner. I am now back to giving myself injections of Lovenox twice a day. Coumadin takes about 5 days to clear my system while Lovenox takes less than a day. I can stop the Lovenox injections one day and have the surgery to insert the central line the next.

It has been a long week with at least 15 appointments. I have also been into work three times though worked less than 8 hours total. I still need to make it in one last time to clean up some of my files. I am looking forward to my last weekend before going in for the BMT

Fitted for Suit

Well, it has been quite a week of medical tests starting on Monday and wrapping up with a final review with the Dr and approval to move ahead this afternoon. Actually, the consent forms that I signed are still subject to results of tests that my brother had today but won't be known until Monday. The start of the process has been delayed until Tuesday, May 1, when I should check into the hospital.

The first thing that will be done is placement of a central line, a dual-lumen catheter that is inserted into my chest and goes under the skin to my jugular vein near my neck. This will be used for all IV and blood draws for the next several months. A review of that procedure was the subject of one of my consultations this week. I had other consultations about all of the chemotherapy and side effects. I signed about 6 different agreements for research studies relative to the main BMT or related tests.

One was related to the study of osteoporosis in BMT patients. I had a bone density scan that showed that I did not qualify since my bones are denser that average. [One benefit of being overweight.] I had a pulmonary function test that showed my lungs were operating at about 75% of normal. A chest x-ray, a CT scan, an EKG and a MUGA heart scan did not show any problems. In fact, my lungs seem clear from the blood clots that I had before though there has been some permanent damage.

The big test was a Bone Marrow Biopsy which still showed all of the same results that it has for the last two years. This biopsy was about average level of torture of the five that I have had. I did it with just local lidocaine and novocaine. There was pressure as they extracted the bone marrow sample with a hollow needle and then pain as they sucked out aspirate three more times. The December test took three attempts before they got a good bone sample.

So why am I being fitted for a suit. That was actually a joke with the doctor who I consulted with about the radiation therapy. I will get a TBI, total body irradiation. The radiation is given from both sides of my body . In order to assure that the radiation is uniform between narrow parts of the body, such as the head, versus wider parts such as through the arms and chest, the technician makes up filters to reduce the x-ray beam to the narrow parts. In order to make the filters, the patient's body is measured with wide calipers, similar to being measured "for a suit". The actual radiation will probably be given on Monday, May 7, and is at a level about 1/5th what they use normally. That will be after about 5 days of chemotherapy and just before the actual BMT.

Keep moving forward

My son and I went up to the lake cabin near Bemidji, MN, on Friday and came back today. Yesterday, we went to a movie theater in Cass Lake. It is just a single screen theater to which we like to give business. Where else can you get a movie for $3.50 and large popcorn and two medium drinks for $8.75 these days. But then you have no choice of movies so we went to see "Meet the Robinsons", an animated Disney film about a genius orphan looking for a family. Without giving up the plot, the theme was Walt Disney's own, "... We keep moving forward...". It also is very appropriate to my decision going forward with the BMT.

While we were at the lake, the ice went out. This was the first time that we experienced this since we have never been there before in April . My mother-in-law says it always happens around her birthday which was on the Thursday. It was dark when we arrived on Friday night though we had enough light to see that there was just a little open water near shore. Since we had no running water and the septic tank was still frozen solid, we went into town for breakfast and a toilet. When we came back, we could see noticeable cracks forming in the lake ice. When we got back from the movie about 3:30 pm, we saw movement in the ice. We sat down near the lake and could hear the ice cracking, see it shifting and piling up in some places along the shore. It rained over night and when I looked outside in the morning, there was an expanse of open water out about 100 feet, parallel to shore. A rock that my son threw out on the ice had moved down the shore and about 50 feet closer as well. Later as we were packing to head home, we noticed a path of open water going straight across the lake. One the cracks opened up about 100 feet wide over the space of at most 30 minutes. I have evidence of the changes in digital photos.

Since I see positive signs in many things, I see it in the open water as well. Just like Moses was parting the Red Sea. I believe the ice is going out in my medical situation. Both my wife and brother mentioned that Evel Knievel was on the "Hour of Power" this morning. The show is available on line if you wish to watch it. After many years of high and low living, he recently told the devil to get out of his life and Jesus Christ to come in. He was baptized by Dr. Schuller and followed by many other people doing the same. Has the ice gone out of your life as it has in Evel's?

Tomorrow, I start my pre-BMT tests and attend a BMT class. In one week, I check into the hospital. Check out CaringBridge as well for more posting by other members of my family.

Transfusion #41

My next transfusion is scheduled for tomorrow afternoon. This will be #41 and 83rd unit of rbcs. My hgb was 8.8 yesterday so I am a little tired but not as bad as last week when it was a point lower. I also made it to the dentist, the lawyer, the bank and the pharmacy yesterday. I only worked 2 hours after lunch and came home for a nap. Today, I worked a full day.

I had a good trip to Scottsdale last week. Flew out on Thursday and back on Sunday. During that time I spent at least 26 hours in meetings and discussions in between. I had leg pains at night from too much standing and skipped the BBQ and star gazing out in the desert on Friday night. I am still working on the trip report, but got my expense report in and payment back in two days. Certainly a record time for me if not the company.

Countdown is 5 days to start of tests, 12 days to check into the hospital and 19 days to the actual BMT. My next post will probably be on Monday after my initial appointments.

My brother has started a series of daily scripture promises which we are posting on the Caring Bridge web site that my daughter started last November. That site also has a guestbook that you may wish to use. If you don't already know my identity, you can find out there.

Transfusion #40

After a little torture, I had my 40th transfusion and 81st unit of RBCs today. Seems like my veins are starting to hide or becoming scarred so it is getting harder to get needles in. It took 4 trys yesterday to get the blood sample and 3 today to start the transfusion. The day hospital was also busy and short staffed so it took me 2 1/2 hours yesterday and 7 1/2 hours today away from work. I had my MacBook Pro with me today so got some work done of my report that I would like to turn in tomorrow.

My Hgb dropped rapidly since last Wednesday when it was 9.8. It was down to 8.0 yesterday, so dropped 1.8 points in 5 days. It was probably 7.8 or less today and I was really dragging. This is the lowest it has been since last April 17 when it was 7.9. Interestingly, that was also over an Easter weekend, remembering the blood that Christ shed for me. Over the past year, we have attempted to keep my hgb above 9.0, allowing me to work a full 40 hours per week.

I am heading to Scottsdale, AZ on Thursday for the COFES conference and will be back on Sunday. Next week I need to wrap up everything I am working on just as if I will not return to work. I will make it back into the office for a few hours the following week if only to pick up my expense check for the AZ trip.

Countdown is 13 days to start of tests, 20 days to check into the hospital and 27 days to the actual BMT.

Countdown -32 days

If all goes as planned, I will have my BMT in 32 days on May 7. But it still all depends on a week of tests starting in 25 days on April 23. I saw the Dr today and all is still go from his perspective. My Hgb was 9.8 today so I should not need another transfusion until next week just before I head for the COFES conference in Scottsdale on Thursday.

We had a great party here for my sister (65) and my son (18) on Sunday. I overworked my legs and arthritic knees and had terrible leg cramps early Monday morning. My right knee still hurts when I walk but I don't think that there were any blood clots.

I had fun showing off our new 46" wide screen HD TV which I decided to get before going in for the BMT. I figured that it would great to have while sitting around the house for months after getting out of the hospital. I am also enjoying it right now.

Transfusion #39

Just a short post to let you know that I had my 39th transfusion and 79th unit of blood yesterday. My Hgb was 8.9 though I felt like it was lower. I feel more tired these days for the same levels of hgb. It had been 14 days since the last, but the average is still 10.5 days between. White cell count was 4.7 and platelets were 325, both about the same for the last several months. There seems to be a slight long term drop in platelets, but that is what the anagrelide is supposed to do. It could indicate my bone marrow is making less platelets with the same dosage of anagrelide, but nothing alarming. If anything, like the increased frequency of transfusions, it could indicate that my bone marrow is starting to fail. Eventually, all my counts will drop to zero without a BMT.

33 days until hospital checkin. 40 days until BMT.

Things to do

It is just 4 weeks to go before I start my physical tests for the BMT and then another couple more weeks before the actual BMT. But what should I do with this time? I have a lot of things that I have been putting off for years, but now need to be done just in case I don't survive the BMT recovery process. During this time I would like to get up to the Bemidji cabin, possibly over Easter, and then have the COFES conference on April12-15. I won't be doing any traveling for probably a year after the BMT.

We also have a birthday party scheduled for my son (turned 18 yesterday) and my sister (turned 65 today). Also planning a birthday party for my mother-in-law (93) and me (59 on May 9th). I will miss my son's high school graduation at the end of May, but I am very proud of him. He has been accepted and is registered at the U of MN College of Biological Sciences in preparation for medical school. He already has been awarded full scholarships based on his 4.0 grade average and community participation. It will be good to have him around as I recover over the next couple of years.

Anyway, what is on my list? Top priority are a will, a medical directive and power of attorney. Then there are all the secrets about where I have all the money hidden. Actually, since I have managed all the finances, I need to document my use of Quicken, banks accounts, 401k plan, insurances, etc. Also need to complete our income tax forms for last year.

On Friday, I met with my supervisor and the benefits administrator at work. We discussed all the Short Term (STD) and Long Term Disability (LTD) benefits. It appears that I have optimized my STD such that I will have just 3 hours short of 26 weeks. I have worked extra hours to make up for time that I needed for Dr appointments, blood tests and transfusions and was last sick only 3 hrs back in November. Since our STD is a rolling year total, any time I took before November will drop out of the total of 26 weeks which will be over on October 26th. I also accumulate vacation while out on STD so will have that pay to bridge the gap to LTD if I need to. Unfortunately, 14 weeks of STD is at 65% pay and LTD is at 60% pay. I also found out that after the 26 weeks of STD, I will no longer be an employee, but can continue with the same benefits plan if I pay for it directly. I still need to check into taxes on this income as well as Social Security disability. Anyway, plan for the worst case and hope for the best.

Another item that I worked some more on this evening is my life story. The outline and about 10% of rough notes totals 14 pages so far. It is not an easy thing to do, but something I recommend that everyone does. We have some stuff from my mother and diaries that she kept for years, but it would be great to have something similar from my father and other ancestors.

I am also trying to clean out old stuff that may have seemed valuable to me, but certainly not to anyone else. Again, there are a lot of memories and stuff to document. How any one know what is really valuable unless I make some notes?

Just thinking about all this makes me wonder if I am doing the right thing in getting a BMT. But I have to trust the advice of the doctors to move ahead and the power of God to carry me through it.

Blurry vision

My Hgb was 10.1 today so I will try and make it until next week for my next transfusion. My other counts were normal, but then my eyesight was a little blurred this morning. I didn't notice anything at breakfast reading the newspaper, but when I got to work I had a hard time focusing on my computer screen. I noticed some problems last week as well.

I called and got right into the eye doctor who said she did not find any problems though I was still having problems focusing there. The thought was that maybe my eyes were dry so she gave me some sample eye drops to try. Of course, she dilated my right pupil which really caused blurry vision. Thankfully, it was an overcast day as I drove to get my blood test. I then went back to work and sat in a meeting for an hour. It cleared up OK and did not bother me for the rest of the day. Though my prescription did not change, I will get new glasses through our work optician, safety lenses free and $40 frames. I could spend more, but am not fashion conscious.

Transfusion #38

As expected, I will have my 38th transfusion and 77th unit of blood today (Tuesday). I was surprised that my hemoglobin had dropped to 9.0 today. That is down from 10.6 on Wednesday, only 5 days ago. That's the biggest since a drop from 10.2 to 8.2 in 7 days back in December. But the worst was back in March last year. My hgb dropped from 7.4 on a Wed morning to 5.9 by midnight on Thursday. I went to the emergency room with irregular heartbeat, was admitted to the hospital and had 4 units of blood on Friday. Now, we try to keep my hgb above 9.0 so I feel a lot better and am able to work.

Actually, it has been 12 days since my last transfusion and the average is 10 days between. I felt very tired and short of breath this weekend and my heart has been beating harder. I took a day vacation today since my wife is home from school teaching this week. Probably would have had to come home from work today anyway to take a nap. In spite of all this, I made three quick trips to Home Depot this weekend. I disconnected the water to our old refrigerator, replaced two venetian blinds and fixed the vanity and shower faucets in the master bedroom. I just worked a little at a time and rested in between.

I also completed 3 health care reimbursement forms to recover $2200 in medical expenses. Not too bad considering I have only paid in $500 so far in the first two months this year. Actually, this was recovering part of over $2500 that we have paid on medical expenses so far. The advantage, of course, is that the HCRA is taken from my paycheck before taxes. I also found out that the Aranesp shot that I get every two weeks costs about $4400 of which I paid 10%. At that rate, it does not take too long to pay the $2500 yearly maximum on my insurance.

Thank God for insurance. Over the last three years, my total cost for health care has been $487,292 though I have only paid $8113. The BMT is supposed to cost about $250,000 and my lifetime maximum is only a million. I still need to find out how much insurance has actually paid since they don't pay all that is billed. For example, the Aranesp shot is actually billed at $6800, $2400 of which the provider is not paid.

BMT Schedule

I talked with the coordinator at the U of MN Fairview BMT program today and scheduled my BMT, actually a Peripheral Blood Stem Cell transfusion. I will start on Monday, April 23, for 5 days of outpatient tests to confirm that I am healthy enough to proceed and establish a baseline for comparison during recovery. One of the first procedures with insertion of a central line that will be used for months for IVs, antibiotics, chemotherapy and the actual BMT. They will then test me from top to bottom.

My brother will also have a physical that week, though a lot less thorough, only taking about 1/2 day. Hopefully, this can be completed in Missouri where he lives since he will not need to be at the BMT clinic until a week later.

On Monday, April 30, I will check into the BMT Unit 4B at Fairview - University hospital. On Tuesday, May 1, they will start chemotherapy to kill off my bone marrow. From May 3 to May 6, my brother will receive growth factors to mobilize stem cells from his marrow to his blood. This procedure is done on an outpatient basis, once a day. On May 7 and 8, stem cells will be filtered from his blood and shortly afterward transfused into my blood stream.

Then the miracle happens, a rebirth, close to my actual 59th birthday on May 9th. Somehow, the stem cells find their way into my bone marrow and start producing new healthy blood cells. If all goes well, I should be out of the hospital early in June and back to work by the end of the summer.

Getting closer

I met with my Dr today and we talked again about scheduling the BMT. He called the BMT clinic to get things rolling. I need to call them tomorrow and start deciding on the details. In general, it may start the week of April 16th with about a full week of various physical tests to assure that my health is good enough to proceed. The BMT may be close to my 59th birthday on May 9th.

On the current front, my Hgb was 10.6 today so I don't need a transfusion this week. I have one scheduled now for next Tuesday, a span of 12 days since the last. But since the last was a little early at 7 days, the average interval of about 10 days should continue. My other blood counts are normal.

I thought for sure that I needed a transfusion this week since I was so tired. I went to bed at 7:30 last night, slept until midnight, watched TV for a couple of hours and then slept until 6:30 am. I was still tired most of today. But then, fatigue is part of this disease.

Unit #75

Well, I will have my 75th unit of blood (packed red blood cells) on Thursday. My Hgb was 9.6 on Tuesday, but normally not low enough for a transfusion. But with my history or dropping about .2 per day, it would be down to about 8.2 by next Tuesday. It will probably be 9.2 anyway on Thursday. This is also my 37th transfusion. Average time over last 4 transfusions is 9.8 days between. Other blood counts are normal.

I have a Dr appt next week on March 7th, but most likely no transfusion. Will start planning the details of the BMT which is only about 2 months away.

Transfusion #36

Still sounds like a broken record since I had another transfusion today, only 9 days since the last. This makes the count 73 units of blood. I was in for my weekly blood test on Tuesday and discovered my hgb was 9.1. Yesterday, I felt so tired that I went home from work after lunch and slept the whole afternoon. After the transfusion today, I still took another nap as well. As typical over the last couple of months, I made an appt for a transfusion for next week (Thursday) as well.

My other blood counts are normal.

Victorious Engineer

Before I explain the title of this blog, my Hgb was 9.1 today and I will have transfusion #35 and my 71st unit of blood tomorrow afternoon. When I went in for my blood test today, I really thought my hgb would be lower since I felt more winded than usual and have been having frequent headaches, another symptom of low oxygen levels.

Last week, I saw a TV commercial that stated that elevated CO levels cause the same symptoms and that CO detectors become less effective with age. Ours was over 6 years old and should be replaced every 5 years. Since temperatures here were below zero for a whole week, our furnace had also been working overtime. I bought 2 new CO detectors, one with a digital display. The display has been reading zero every day downstairs near the furnace. The other unit is upstairs near our bedrooms.

Back to the title, I received a personal invitation to the "The Congress on the Future of Engineering Software" last week and approval from my employer to attend. The conference is on April 12-15, within about 2 weeks of my planned BMT. Doctor says it is OK for me to travel out to Scottsdale, AZ which is also near a branch of Mayo Clinic. Anyway, I appreciate the vote of confidence from my employer as well as my family and the doctor. I have something to contribute to this conference and to gain for use after my recovery from the BMT.

I AM getting there on the title. One of the principals in the conference is a very talented journalist named Joel Orr. A good first name, don't you think. Well, back in 1999, I received a book written by him as a gift after hints to my wife. Remembering the book, I went to my bookcase. There it was, "The Victorious Engineer". Not a coincidence, but a "Godincidence" which I consider further support for my decision to move ahead. I will be victorious over this disease as Christ was over death.

In reviewing the book again, I could quote positive encouraging statements from almost every page. For example, on the title page:

"A man who wins may have been counted out several times, but he did not hear the referee." H.E. Jansen

In the preface, "Of all human types, the engineer is one of the most God-like. Engineers design and make things of all kinds."

On the back page, Joel Orr states, "But all that comes to me is a quiet bubbling thankfulness ... and to God for giving me this wonderful life." He ends with "The Lord bless thee and keep thee; the Lord make His face shine upon thee; the Lord lift up His countenance upon thee and give thee peace."

After reading one of his articles years ago, I sent him an email asking him if he was a Christian. To paraphrase his answer since I don't have the exact words of his reply:

"If I am ever indicted for being a Christian, may there be enough evidence to convict me."

OK this week

Turns out my Hgb was 10.0 on Tuesday so that I don't need a blood transfusion this week. But figuring the typical drop in Hgb, I scheduled one for next Tuesday after a blood test on Monday. Other blood counts were 346 for platelets, 6.6 for white cells and 19 for Factor 2, all of which are normal.

Though just a formality, I received official approval from my insurance company to proceed with the BMT. Doctor has also approved my travel to a conference on April 12-15. I still need to get company approval for the travel expenses.

Transfusion #34

Sounds like a broken record, but I had another transfusion today, only 9 days since the last. This makes the count 69 units of blood. I was in for my weekly blood test on Tuesday and discovered my hgb was 9.2. Yesterday, I felt so tired that I went home from work after lunch and slept the whole afternoon. After the transfusion today, I still took another nap as well. I have also had a lot of headaches and have been very itchy lately. I take Tylenol and Benedryl several times a day in addition to my regular medicines. As typical over the last couple of months, I made an appt for a transfusion for next week (Thursday) as well.

My other blood counts are normal.

Transfusion #33

I didn't expect it to be so soon, but I had another transfusion yesterday (Tuesday). This makes the count 67 units of blood. I felt so tired Monday morning that I went home from work at 11am and took a 2 hour nap. I then called the clinic and got in that afternoon, a day early for my blood test and Aranesp shot. My Hgb was down to 9.0 so they got me in for a transfusion on Tuesday instead of Thursday. I felt like my hgb was even lower then and needed a nap this evening as well. It was 12 days since the last transfusion and the running average over last 4 times is now 10 days. As typical over the last couple of months, I made an appt for a transfusion for next week (Thursday) as well.

My other blood counts are normal.

BMT Planned

Well, I met with my U of MN doctor today and decided to plan the BMT for around May 1st. This will be the best for my family since I will spend the first 3 to 6 weeks in the hospital and then will need to be isolated at home for another 8 to 11 weeks. The first 100 days are the most critical while the new bone marrow takes hold and my immune system is restored. The doctor will contact the BMT Center and we will meet next on March 7.

My Hgb was 10.2 today so I can wait until next week for another blood transfusion. Next week will be wild with a dentist appt as well. I should work a little extra this week to compensate. I am thankful that I feel as good as I do right now and it seems strange that I am going ahead with the BMT. "Walking through the valley of the shadow of death" (Psalm 23:4) is taking on a whole new meaning.

Transfusion #32

I didn't expect it to be so soon, but I will have another transfusion tomorrow (Thursday). This will make the count 65 units of blood. When I went in for my blood test and Aranesp shot today, my Hgb was down to 9.4. On Monday at Mayo Clinic, it was 10.1 and I did not expect it to drop .6 in two days. I ended up in the same situation as last week where my Hgb could drop below 9 by the weekend. I could not chance making it to next week since Monday is a holiday again (Martin Luther Day). I already had an appointment for a transfusion scheduled for tomorrow; just did not think I would need to use it. I was scheduled for a transfusion last week as well and then did not need it. I cannot predict the next week and cannot guess what my Hgb is going to be when I get it checked. Probably another symptom of my failing bone marrow and time to address the problem with a BMT.

My other blood counts are normal.

Mayo Results

Well, it seems like I have been to Mecca. Got back from the Mayo Clinic in Rochester about an hour ago. After driving down this morning for a blood test at 10 am, I met with Dr. Alayew Tefferi about 3:30pm. I actually met with a med student from India for about 45 minutes while she reviewed my case and summarized it for the Dr. I spent only about 10 minutes with the Dr.

In summary, he cut right to the chase, saying that I was seeing him because he was THE expert. He said that I had chronic myeloid disease, a general term to cover all the variations of MPD and MDS. It does not matter what you call it since it eventually all leads to AML, acute myelocytic leukemia, when the bone marrow shuts down and all blood counts drop. Medicines and transfusions can reduce the symptoms but it is just a matter of time, maybe 5 years. He did say that my current marrow was not that critical, with less than 5% blasts (undeveloped cells). He looked me straight in the eye, with his hand on my knee and said "If you were my brother, I would recommend a BMT, sooner rather than later". He said my brother's marrow stem cells were the best option and if I delayed further that they should be harvested and frozen. As I was driving home, listening a classical music station on the radio, I stopped at the Trinity Lone Oak Church in Eagan for a stretch and a short prayer asking God to tell me what to do. Then I got to thinking. What better sign than one of the top (self-acclaimed) experts in the world telling me what he would tell his brother. Time to start planning in earnest.

Interestingly, my Hgb was still up at 10.1 today though still a typical drop of 1 point over the past week. Looks like I can delay a transfusion another week. I still need to go in for a Aranesp shot this week. Maybe that stuff is working though I am still working the chocolate milk theory.

Hgb - Chocolate Theory

Surprise, my hemoglobin was 11.1 today, the highest since last June when it hit 11.5. But at that time, it was after cutting my Anagrelide from 2 pills per day to 1. At that time my platelets also hit a high of 1050 which was not good. Within one week, I was back to 1.5 pills per day to get the platelets back down. I was still on Procrit at that time as well.

So what did I do different in the last week? Was it the eggnog, the turkey or the Aranesp? I had my second Aranesp shot last Tuesday, but then I had a little Hgb rise to 10.2 after Thanksgiving turkey as well. I also drank a gallon of chocolate milk last week and ate many helpings of chocolate candy. Chocolate seems like the best theory to me, so I will go have some more fudge.

Anyway, I do not need a transfusion this week and will be at Mayo Clinic on Monday. BMT decision time is getting closer.

iWoz vs I AM

I recently read the autobiography of Steve Wozniak titled "iWoz". Steve was the creator of the original Apple computer. You can read my review of the book on my technical blog njerd.blogspot.com

After reading the book, I realized that an autobiography is an "I was" story. Considering my health situation, I have started my own autobiography, not to publish, but as a legacy for my family and future generations. Believe me, it is difficult to do under the circumstances, but something I wish all of my ancestors had done. It is difficult to remember those early years, even the later years. But every time I work some more at it, I cannot help but think of the future. What is in store for me over the next year? Will I survive a BMT? If I do, what torture do I have to endure from GVHD (Graft vs Host Disease)? Why me?

Then I remembered what God told Moses in Exodus 3:14, "I am who I am" and that Moses was to tell the Israelites, "I AM has sent me to you". God says his name is "I AM", not "I WAS". God is the same yesterday, today and forever. I just need to remember that through my belief in His grace that "I am" forever as well. This body is just my earthly home though I would like to live here as long as possible.