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.

Transfusion #31

I didn't expect it to be so soon, but I had another transfusion yesterday (Thursday). When I went in for my blood test and Aranesp shot on Tuesday, my Hgb was down to 9.4. The week before on Wednesday, it was 9.3 and I had a blood transfusion the following day. I really expected it to be higher this week, but ended up in the same situation as last week where my Hgb would drop below 9 by the weekend. I had no problem in getting in for a transfusion this week. Actually, the lab now draws enough blood for a type & cross match when they do the standard blood test. I am already scheduled for a transfusion next week, anticipating they will be busy after the New Year holiday.

My other blood counts are normal. I have ordered a copy of my records to take to Mayo Clinic on January 8th and look forward to making a decision of what to do next. BMT?

Transfusion #30

Well, I had another transfusion today. While pretty routine now, the biggest story was in the scheduling. Prior to my previous transfusion on Wed, Dec 13, my Hgb was 8.2, so it was no surprise that my HGB was 9.3 yesterday. Because of the Christmas holiday coming up, I pushed for a transfusion on Friday. But there was no room at the "Inn". All of the alternative clinics at the Fairview U of MN medical center were booked up. The earliest that I could get in was on Tues, Dec 26. By then, my Hgb would certainly be close to 8 and wouldn't have the energy to really enjoy Christmas.

My doctor said he would "throw his weight around" to get me in, but called me back this morning saying that "he was not heavy enough". I had two alternatives: check into the hospital or go to the emergency room, either of which insurance might not pay for. Of course, if I did have real shortness of breath or heart problems like I did back in March (Hgb dropped to 5.9), I would have no problem going to the emergency room.

So after deciding I would wait until Tuesday, I received a phone call at work this morning. The Day Hospital where I have my transfusions had a cancellation and my blood was ready. The big snow storm (2" for us) caused someone to cancel, providing time for me. It also turned out that I no longer need to wait 2 days for a blood match, since my Coombs test is now negative.

So I had my 30th transfusion and 61st unit of packed red blood cells during mid-day and made it back to work for a few hours this afternoon. Instead of dragging this weekend, I should be at my highest energy (Hgb) level since June. I also have made an appt for Jan 3 for another transfusion so that I don't get caught in the after New Years scheduling rush.

Since I probably will not post again until next week, remember that "Jesus is the reason for the season." Have a Merry Christmas.

BMB Results Delayed

I saw the doctor yesterday, but he did not have the final results of the BMB yet. Still very similar to previous ones so far with more blasts (young cells) and fewer red blood cells. The term myelodysplastic and myeloproliferative are still being used. Will know more later and then get opinion from Mayo in about a month. Since it does appear that the RBC production has dropped since I stopped the Procrit, he prescribed Anasesp which is similar. I will get a shot every two weeks when I am in for my blood test. My BMB puncture wound is healed, at least on the outside. I have had little pain since the BMB and main discomfort was from the bandage.

BMB Experience

Even though I have had a Bone Marrow Biopsy (BMB) three times before, the one this morning was a different experience. I had my first in March, 2005, at the Masonic Day Hospital, the same place as today. My wife came with and drove me home afterwards since I had some sedative prior to the procedure. Today, I did not have a sedative since I was driving myself. My second BMB was in May, 2005, at Mayo Clinic where I had no sedative but don't remember a lot of pain. I drove back home afterwards. My third was while in Fairview Hospital in January for other tests as well. I must have had a sedative at that time as well, even though I didn't go anywhere afterwards. Next time I think I will have a sedative.

Some things may be changing with my bones as well since it took four attempts to get the bone marrow sample this morning. Though I did not have sedative, I did have some local Lidocaine to numb the tissue in the test area. The local anesthetic does not numb the interior of the bone. The first attempt hit upon scar tissue or hard bone that the tool could not penetrate easily. (A bone marrow biopsy uses a special tool that twists into the bone. You may feel pressure at the site and hear a crunching sound as the tool twists into the bone.) The second and third attempts hit soft marrow that crushed easily and did not provide a good sample. These two attempts were the most painful, once making pain shoot down my left leg. The fourth attempt was good retrieving a sample about 2 cm long and about 3 mm in diameter. Four samples of aspirate were also sucked from the bone marrow, about 10 ml total volume.

Even though I had three or four holes drilled in my hip bone, there was little pain afterwards and I drove back to work. But after a couple of hours at work, I decided to go home to my recliner since sitting in my desk chair was somewhat uncomfortable. A couple of Tylenol helped as well.

I also had a blood test this morning. While my hemoglobin was 10.2 last Tuesday, it was only 8.2 this morning, the biggest drop in six days that I have had. Maybe the bigger difference is error in the tests or variations by different lab technicians. I will get the results of the BMB and will have another transfusion on Wednesday.

BMB Scheduled

I was in for my weekly blood test today and learned that I am scheduled for a bone marrow biopsy (BMB) on Monday, Dec 11. Doctor wants it in prep for my appt with him on Dec 13. I think he also wants it prior to my visit to Mayo in January. The last BMB was on January 11 while I was in Fairview Hospital. My Hgb had dropped to 7.2 after over 3 months being stable at about 9.5. The BMB is the key test as to whether I need the BMT in February.

Surprisingly, my hemoglobin was 10.2 today. I would have guessed that it was closer to 9.2 considering how it has been going recently. White cell and platelet counts were normal. I will probably need a transfusion next week as well, but that is better than needing one this week. Maybe, it will get back to every other week.

Heinz 57

Maybe I now have Heinz 57 steak sauce running in my veins. That is, I now have had 57 units of red blood cells transfused, most likely from 57 different donors. Each unit potentially leaves a trace of its anti-bodies behind. But since red blood cells live about 120 days, any that I received before the last 20 units are long gone. It took me about a year to get the first 29 units, but only six months to get the rest.

I was surprised that my Hgb was only 8.7 on Tuesday, requiring the transfusion that I had this morning. It was only 10 days since the last one and the average time is now 16 days for this year.

Mayo Appointment

My procrastination is over. I finally made an appointment with Dr Alalew Tefferi at the Mayo Clinic in Rochester, MN on January 8. I could have gotten in as early as December 20, but delayed until January. This way I should be able to have one bone marrow biopsy that would satisfy Mayo and still be timely for U of MN prep for possible BMT in February. Dr. Tefferi is recognized as one of the leading authorities on MPD in the world. Not a day goes by where he is not mentioned on one of the MPD email lists that I subscribe to.

On current status, I had a blood transfusion yesterday, #27 for a total of 55 units so far. My Hgb was down to 8.6 and platelets were 445. White cells were down to 8.1, indicating improvement on my sinus head cold which has almost cleared up. I took my last Azithromycin today and currently only have a slight headache.

Rough week

I traveled to Texas on Monday and woke up with a dry, sore throat on Tuesday. Though I could not speak very well I attended about 8 hours of the conference. The place, Gaylord Texan Resort, was so large and spread out that I had to walk too much. Tuesday night I slept for 12 hours. I attended most of the meetings but skipped the social times which would have required standing and talking. The flight back on Thursday was great. I caught an earlier flight and took a couple of Benedryl. It wasn't until evening that I got some pain in my right ear. I took some Drixoral, slept ok and went to work on Friday (yesterday). Since I had a blood test set up, I called ahead and was able to see the physician assistant as well and got an antibiotic prescription.

Last night I took the initial dose (2 x 250mg) of Azrithromycin along with another Drixoral about 5 pm, but within an hour started experiencing rapid and irregular heart beat. This was similar, but not as bad as I had in March when I went to the emergency room. We called the triage doctor on call who advised me to just rest and see it through. By 9 pm, I was feeling better, but skipped my evening Anagrelide pill which also sometimes affects my heart rate. This morning, I am just into trying to throw this infection off. Now just congestion, sinus pressure, drainage and coughing up nasty stuff.

My blood tests results were mixed again. White cell count was up to 10.9 as a result of the infection. Platelets were 422 which is good. Hgb was 9.0, meaning I am scheduled for another blood transfusion on Monday. Its a good thing I had the last transfusion before going to Texas or last nights episode would have been more difficult with any lower Hgb. The average time between transfusions has dropped to 11 days over the past month.

Two years

I knew it was close but just realized today that it has been exactly two years since I entered the hospital with a lump and labored breathing. See "The Mystery Begins", my second blog entry. The lump turned out to be an ingrown hair and the labored breathing was a pulmonary embolism, possibly 3 blood clots in my right lung. I have had at least two clots since then. With a 20% mortality rate for a blood clot, by all rights, it is a miracle that I am still here today.

So what does the future hold? A BMT has a mortality rate of 40 to 60 percent, depending on many factors. Or is that a survival rate? Is the glass half-full or half-empty? When asked this question, an engineer might say that the glass was twice a large as it needed to be. How many years of life do you or I need?

Here are some wise words from this morning's sermon by Dr. Robert H. Schuller, titled "The 10 Commandments of Thankful Living", :

"I'm seventy-eight years old and it still shocks me to say that I have never had anything happen in my life, including tragedies, near disasters, that did not turn out to be blessings in disguise. "
...
"Are you disappointed or discouraged today? Don’t turn the TV set off. Don’t close the book. Don’t walk out of the movie ... the story isn’t over yet. Give your story a happy ending. Thank God for the hope that springs eternal. Because of Jesus Christ, we know that life has no end."
...
"God will always have the last word, and it will be beautiful! Hallelujah."

With God, the glass will not become empty, but is being continually refilled. Just like when Jesus turned water into wine (John 2:1-11). "Everyone brings out the choice wine first and then the cheaper wine after the guests have had too much to drink; but you have saved the best till now."

BMT Option Back

I had a couple of surprises today. My hemoglobin was only 9.1 and my doctor says to start planning for a BMT (blood marrow transplant).

It was only 8 days since my transfusion last week and I expected my Hgb to be about 9.6, the average of my Hgb measured a week after the last 6 transfusions. I was already scheduled for a transfusion on Thursday, in preparation for the trip to Texas next week. If I wasn't, the doctor would have scheduled one anyway. I hope I make it through next week, but will be in for a blood test on the 17th, right after I get back.

Back in August, the doctor said that a BMT would be too risky and a last resort. Today, he said that he recommends we proceed with one. It turns out that my last two Coombs (direct antiglobulin) tests have been negative, meaning that my immune system is not destroying my red blood cells as we thought it was before. I also stopped taking Procrit a month ago and did not see any immediate change. The doctor does not think that the Coombs test result is related to the Procrit. This is all complicated by the fact that my Anagrelide medicine, needed to reduce platelets, also reduces red blood cell production. We need to take another BMB (bone marrow biopsy) to see what is happening where the blood cells are produced.

The current thought is to wait until January for the BMB which would followed by a BMT within one month. The doctor recommends a mini-BMT where the chemotherapy and radiation does not completely wipe out all of my current bone marrow and also does not kill me off before the new stem cells can engraft in the bone marrow. The new bone marrow would hopefully finish off the old bone marrow. He also says that my brother's marrow (stem cells) could still be used, but that umbilical cord stem cells may be used instead. Cord cells are taken from the umbilical cord blood (UCB) of a newborn baby. That is beneficial since UCB has not accumulated a lot of antibodies. The U of MN has one of the most experienced UCB transplant units in the country. (Note that the linked Fairview web site is one of the top returns when searching for "cord bmt" in Google.)

My current thought is to get another opinion from Mayo Clinic in Rochester, but would go with the U of MN and Fairview for the BMT.

The Heart

Tonight, I was reviewing old bookmarks that I have saved and came across the following on the Christians Unite joke website. Look under the Doctors category for joke titled, "The Heart". Are you a lamb in His flock? Will the doctor find Jesus in your heart?

"Tomorrow morning," the surgeon began, "I'll open up your heart..."

"You'll find Jesus there," the boy interrupted.

The surgeon looked up, annoyed "I'll cut your heart open," he continued, to see how much damage has been done..."

"But when you open up my heart, you'll find Jesus in there," said the boy.

The surgeon looked to the parents, who Sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next."

"But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tel! l you what I'll find in your heart. I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well."

"You'll find Jesus there too. He lives there."

The surgeon left.

The surgeon sat in his office, recording his notes from the surgery, "...damaged aorta, damaged pulmonary vein, widespread muscle de generation. No hope for transplant, no hope for cure. Therapy: painkillers and bed rest. Prognosis:, " here he paused, "death within one year."

He stopped the recorder, but there was more to be said. "Why?" he asked aloud. "Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is a part of My flock, and will forever be. Here, in My flock, he will feel no pain, and w! ill be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?"

The Lord answered, "The boy, My lamb, shall return to My flock, for He has Done his duty: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb."

The surgeon wept.. The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?"

"Yes," said the surgeon.

"What did you find?" asked the boy.

"I found Jesus there," said the surgeon.

50+

Well, I reached a milestone of 51 units of blood received since June 2005. Over the last 9 times, the average time between has been essentially 2 weeks. I also have one scheduled for next week (Nov 9) to get ahead of the curve and prepare me to make it through the conference in Texas, Nov 13 - 16.

This has been a strange week health-wise. On Monday after my blood test at noon, I went back to work for a hour, then felt very tired and went home to bed. I worked a little at home to account for 6 hours. Tuesdays, I was all energized and worked 10.5 hours. Wednesday, I had the blood transfusion and worked 6 hours, 3 during the transfusion. Thursday, I worked 5 hours before going home with a bad headache at 1 pm and slept for 3 hours. Today, I felt better and worked 10 hours. In all that, I ended up taking 3 hours of sick time.

I may have some small virus since my white cell count was up to 7.3 on Monday. My Hgb was 8.6 (typical), but my platelets were up to 555. Strange though that I have energy one day and not the next. Other MPD patients have much more bouts of fatigue though.

I downloaded a new iTunes song this past week. Sung by Janet Paschal with great lyrics which I wish I had for you. The title says it all: "It won't rain always". Check it out for $.99 at the iTunes music store, the only way I buy music any more. iTunes is free for either Mac or Windows.

The Whole World

I got home from work a little early on Friday and watched the end of "Millionaire". The last contestant went out on a $2000 simple question about which continents the Sinai Peninsula was between (or part of). The obvious two choices were "Africa and Europe" or "Africa and Asia". The contestant chose it wrong as I would have. It actually is in Asia though part of Egypt which is part of Africa. It just didn't seem right that it (and Israel) are considered part of Asia. They are part of the Middle East or South West Asia.

Anyway, I Googled and found a web site named "Ilike2learn.com". I spent about an hour taking their quizzes on where the countries are and didn't do very well. Just think, I am nearly 60 years old with a PhD and still have so much to learn. You can never stop learning.

Last night, I fired up "Google Earth", a fantastic application. This is one program that sucks up bandwidth and taxes the dual processors of my new MacBook Pro. I can fly around the whole earth and zoom into any area composed of satellite images all stitched together. I spent a couple of hours visiting North Korea, Japan, Tonga and the UP of Michigan. I relived my honeymoon trip to Brockway Mountain Drive and Tahquamenon Falls.

As I was doing this, I thought of the song, "He's got the whole world in his hands". With Google Earth, you can start with the earth at about 3 inches in diameter and it first zooms in so that the diameter of the earth and North America fills your screen. You can give the world a spin with your mouse or zoom in at any point to see houses and cars. You have the whole world in your hand and in your control. Imagine how great a God we have that can do this with the universe and still zoom in to touch our lives.

Blood History

I thought I would do something different this week, otherwise it has been typical. I keep a medical history log in a spreadsheet. So far I have 192 entries starting six years ago. My records are sparse for the first four years with 17 entries up to October 19, 2004 when my orthopedist scheduled me for knee surgery (see my first blog entry). I actually started the log in early 2005 by reconstructing the history to that point. About six months ago when the doctor started experimenting with different medicines, I started a chart showing how my hemoglobin and platelet count varied with the changes in medication.

If you click on the graph shown here you can see a larger version. The date scale is not linear though pretty consistent with one entry per week over the last three months. Note that the top red line is my hemoglobin and the dark blue line is the platelet count (scale on left). The vertical bars are infusions with the red bars being my blood transfusions. The other lines are pills or shots. If anyone is actually interested in the details of the medications, just post a comment asking for more info.

So what does this show? In June 2005, I was hospitalized with a bad infection and high fever after getting a pneumonia vaccination. Before that my Hgb was steady around 10 and and my platelets were normal count around 400. Then my platelets started up and doctor prescribed Hydrea. But the side effects caused me to switch to the Anagrelide (yellow) that I have been on ever since. The brown line is my Coumadin level which is varied to keep my Factor 2 between 15 and 25. That controls my blood clotting which is also affected some by the platelets. All the other medicines are attempts to control my hemoglobin and red cell count.

It will be interesting to see if stopping the Procrit will have any effect on my Hgb and frequency of blood transfusions. Over the last month, my Hgb has been inching down based on my regularity of getting my blood tests on either Tuesday or Wednesday. With my Hgb of 9.4 on Tuesday this week, I will probably go in for my blood test on Monday next week. One of these weeks, I have to get an extra unit of blood to get me through the week of November 13 when I plan to be in Dallas. Maybe I can get blood earlier next week (Nov 1) and then again the following week (Nov 10) when I also have my next doctor appointment. That should put my Hgb over 10 for the trip.

Cycle Continues

I am still on my regular cycle of blood transfusions every two weeks, like clockwork. I had my 24th transfusion yesterday, total of 49 units of blood so far. My blood counts were hgb=8.5, wc=4.5, platelets=433 and Factor 2=23. I was surprised that my Factor 2 was up after being low last week. I don't remember eating anything much different. My stools seem to have been normal over the past week as well. It has been over a week since I had my last Procrit shot. Procrit is supposed to stimulate red blood cell production. It will be interesting to see if it has any effect on my frequency of transfusions.

I had a hard time going to work this morning, but went since I had a meeting. Both my wife and son were home from school so I took a 1/2 day vacation in the afternoon. I am getting a little depressed about working though I am fortunate to be able to do so. I feel trapped because I have to work to get the insurance and pay the bills. There has to be more to this life, even the unknown portion that I have left.

Yesterday, I received a beautiful get-well card from my niece and her family. Made my day! It had some drawings of a fox, an octopus, a tank, a volcano and a person drawn by the kids. The card said "I am the Lord who heals you" and "Praying His healing power will restore you to health soon".

My daughter, my Harvard theologian, has some deep spiritual thoughts on her Grace Freewill blog. Check it out if you haven't recently. It helps me grapple with what I am going through, expecially her recent studies on the books of Job and Kierkegaard. Maybe, I just need to be a "knight of faith" and should proceed with the BMT. Like Abraham, prepare for the worst outcome of a BMT with the faith that God will heal me through the process.

More blood in stool

Since my last doctor appt, I took 3 stool samples in for testing on Wed. One the three showed blood confirming what it looked like to me. I assume the doctor still feels it is a bleeding hemorrhoid.

My other blood counts were typical: Hgb of 9.5, white cell count of 4.5, platelets a little lower to 439 and Factor 2 of 14. I reduced my Coumadin for one day to raise the Factor 2. I took my last Procrit shot on Monday. It supposedly took the Procrit some time to take effect so I expect I wouldn't see any big change this week. We suspect that it not helping anyway and my Hgb will not change from its current two week cycle.

I will probably need another transfusion on Thursday, but also need to break the two week cycle. I plan to attend a conference in Texas during Nov 13-16 which is 4 weeks away. I will try to get extra blood on Nov 2 or 9.

Blood in Stool

Well, this was a busy week with a few surprises. Last Sunday night after my last blog entry, I had stomach cramps and then a strange bout of diarrhea. It had some dark stool plus something that looked like a worm. I took a sample in for test on Tuesday and blood was found. The "worm" must have just been something undigested. On Wednesday, the doctor said it looked like it might have been from a hemorrhoid, but gave me some cards to collect more samples. I have not been constipated and my hemorrhoids have not been hurting or itchy lately. This morning, I had another loose stool with another bloody piece. It has been about 18 months since I had a colonoscopy, but maybe I will need another.

I also had a transfusion on Thursday starting at 7 am and was back to work by noon. Friday, I had an all day conference at the Mystic Lake Casino, almost an hours drive south of here. I left home at 6:30 am (again) and did not get home until 6 pm. Even with a blood test, dr appt and transfusion, I still worked 42 hours for the week. When I got home Friday night, I went straight to bed for a couple of hours.

On Wed, my Hgb was 8.8, white cells were 5.0, platelets were 638 and Factor 2 was 15. Because of increased platelets and itchiness that I have had recently, I have to increase my Anagrelide again. I am also taking Benedryl for the itching from the histamine produced by excess platelets. I also have more headaches and take Tylenol several times a day. Today, I had vision distortion coupled with the headache and took a two hour nap after lunch. Also since it doesn't appear that the Procrit is helping any, I will stop taking it for a month to see what happens with my Hgb. That will at least save the insurance company $2000 per month.

I did get outside today, shopped at Sam's Club, raked and blew some leaves around and fired up the old '76 Malibu. It started right up after I borrowed the battery from the van. It had not been started for close to a year and took a little cranking to get gas to the carburetor. One of the spark plugs is broken, so it misses a bit, but runs surprisingly well. I need to get rid of it since it is just rusting away next to the garage. It has not been on the road for three years.

Memorial Service

We had a memorial service this afternoon for my mother at my sister's church in Bloomington. It was a beautiful service with many Minneapolis area people attending. I showed my slide show tribute to my mother during the service. I reduced it to 145 slides and synced it with music from Fernando Ortega: I will sing of my Redeemer and Hear me calling, great Redeemer. I also had the strength to get up and talk about my mother and thought I would summarize it here:

I was a Mommie's boy (at which point my sisters seem to say, Amen!) I was born on Mother's Day in 1948 and every birthday I had since, my mother would say I was the best Mother's Day gift she had received.

I was with my mother many times during the last week of her life and I was there with my sister when she died. Though she could not communicate with us, I believed that she was praying for me and others while we were praying for her. During the last moments of her life, my sister and I were reciting the 23rd Psalm. As the gates of Heaven opened for her and she went on through, I could sense the power of God and the joy within her soul.

I thanked the many people at the service who have been praying for me. The 22 blood tranfusions that I have had over the past year have kept this earthly body of mine alive. But it was the big blood tranfusion that Jesus Christ gave me on the cross that will keep me alive for all eternity.

Blood stats

Not a whole lot to report this week. I actually worked 41.5 hrs while getting in my blood test and taking Andrew to the doctor for his nose checkup. My blood stats are 9.8 for hemoglobin, 5.0 for white cells, 502 for platelets and 16 for Factor 2. Of primary interest is that my platelet count has actually dropped from 573 last month even though I reduced my anagrelide by 1/3. The last time my Anagrelide was dropped to this level, my platelets shot up from 259 to 1050 in 5 days though I also had just finished by the IgG transfusions.

I am sure that my hemoglobin will drop next week and I will have another blood transfusion . I also have another doctor appointment so may learn about what to expect next.

Busy week

After getting back from Michigan (Mom's funeral) on Sunday, I took vacation on Monday to be with Andrew during and after his sinus surgery. Tuesday, I had an eye doctor's appoinment and went home to sleep for a couple of hours to recover from the eye drops. Wednesday was a wild day. I had my blood test at 7:30am, took Andrew the doctor at 10:30, got a call to go back for a blood type & cross match at 2:30pm, stopped at DHL to pick up my repaired Mac laptop and still managed to work 7.5 hours before getting home about 7pm. I actually worked 9.8 hours on Thursday, trying to make up the time I had missed.

Since my hemoglobin was 10.2 a week ago, I really did not expect it to be 8.6 on Wednesday. I didn't expect it to be 10.2 before either. So I had a blood transfusion on Friday, but was not able to connect my laptop to the university network and to our work computers. Seems like my daughter's university network account has expired and I was out of range of the hospital's guest network. I ended up taking some sick leave to account for the missed hours.

So the count is 22 transfusions, 45 units of packed red blood cells and an average of 18 days between transfusions this year. The last 4 transfusions have been 14 or 15 days between since I slipped from transfusions on Wed to Friday.

Mother Butterfly

Sorry for the delay in posting, but my mother died last Monday. My sister called from the hospital just before lunch and my mother died in our arms about 3 hours later. It was difficult to tell whether she could comprehend anything we said to her in those final hours, but I imagine that she was more concerned about us and was in perfect peace, knowing she was going to a better place in heaven. We recited the 23rd Psalm as she took her final breaths. I personally gained strength from this experience, like a direct channel to heaven was open for her and we shared in the power of God accepting her soul. May I be as peaceful and trusting in the end.

Thankfully, my blood counts were good on Wed. My hemoglobin was 10.2, where by past experience the week after a transfusion, it should have been closer to 9.3. My platelets were fairly level with previous weeks. Anyway, it gave me added strength for the week and the funeral on Saturday.

I didn't work the rest of the week, but spent a few days putting together a photo slideshow tribute of my mother's life, from her baby picture to her obituary. I had a lot of recent pictures from her 89th birthday party on August 20. I even scanned pictures from my mother's home on Friday night. The funeral home had a large screen tv which I used to cycle through the pictures throughout the visitation. One of these days I will get these posted on my web site as well.

The many tributes to my mother were tear-jerking. I was composed until my niece, Lori, spoke about my mother as a "Super Woman" who just kept going, working and serving everyone in any way she could. Lori related a story of when she was 8 and asked my mother if she could eat Thanksgiving dinner in the new living room with her big cousins. Then she accidently dumped her full dinner from the tv tray unto the new carpet. My mother did not get mad, but cleaned up the mess while comforting my niece and making her feel at ease. That was my mother, always gracious and never getting mad. After Lori's story, I was an emotional wreck and could not speak myself. Thanksfully, there was no shortage of tributes to my mother's life.

Remember the butterfly story about my father in my last post and the butterfly that showed up in the floral arrangement when I was in the hospital in Nov 2004. Why, there was also a butterfly at my mother's birthday party, there was one on the newspaper section of her obituary and also one on the program for her funeral. Coincidence? No, God-incidence as I once heard in a sermon. The butterfly has now emerged in a new heavenly body.

Mom's status

Since I posted on Tuesday, I have had another blood transfusion (43 units over 21 sessions since first June 2005) and my mother has been going down hill. I visited her after my transfusion on Thursday and her response was minimal. Andrew and I visited again Thursday night and she seem to acknowledge when I said "I love you". I went to visit her today as my sister (Lola) relates in the following from an email message:

"Some of you know and some of you don't but my Mom had another stroke on Monday, the 4th of Sept. We were supposed to take her home this week but now she will soon be going home to heaven. She was able to talk with us some the beginning of the week but as the week has progressed she has gone into a coma. Joel, ( my brother), Don, another friend and I went to see my Mom this afternoon and had a little prayer service for her and sang a few songs. She seemed to try to open her eyes a little when we sang and prayed. It is difficult to see her like this but we know her greatest joy would be to wake up in heaven in the arms of Jesus. Please pray for us and for her these days. It may be a few days or it may be a week. It is hard to say how long it will be. Only God knows that."

My problems are forgotten in light of the current family situation. So many memories of my 58 years with my mother come to mind. She has had a good life of 89 years and is ready to go to be with Jesus and my father who died almost three years ago. As I sit with her it reminds me of sitting with my father five years ago and wondering what he was thinking. I related an analogy of a Butterfly on my Story2Tell website at that time. Likewise, perhaps my mother is like a Butterfly as well or soon to be in a beautiful new body in heaven.

Again

Again, my hemoglobin is down to 8.4 and I am scheduled for a transfusion on Thursday. This makes 43 units of red blood cells since my first and an average of every 18 days during this year. Other blood counts were essentially the same though platelets were down some to 534. Strange since they should go up with my reduction of Anagrelide.

Again, my mother is back in the hospital with another stroke. This one was caused by bleeding into her skull on the right side. A 2 inch spot was visible on the CT scan and is putting pressure on her brain. It happened early Monday morning and I met my sister, Charlotte, in the emergency room at 7:30am. Mom is still aware and recognizes people, but has extreme difficulty speaking. She was doing better today, but doctors don't hold much hope for her going home again. Sunday, she was moving on her own with the walker, had control of her bladder and would have gone back to Lola's today. A day later and everything has changed.

Weekly Update Again

It has been another week in what is a repeating two week cycle. Since the blood transfusion last week, my hemoglobin is back to 9.3. It probably was up to about 10.5 after the transfusion and by next Wednesday will be back down to around 8.5 again. Platelets and white cell counts were exactly the same even though I reduced my Anagrelide over the past week. Factor 2 was 16, almost half of the 31 last week, but within range of target 15-25 range. I didn't eat any spinach and fewer greens this week. It is a boring report but good that it is repeatable. Not much, but the frequency of my transfusions has changed in the last year. Then, I was on my third one with about 5 weeks between them.

On the iron storage measure, my ferritin level is 2272 where normal range is 12 to 300 for men and 12 to 150 for women. My doctor is still not concerned and my ferritin has actually gone down some since May. Marilyn's ferritin level is 7 and is getting an iron infusion tomorrow.

I just got back from visiting my mother at the nursing home. She will probably get to return to my sister Lola's house next Tuesday. Once she heard that she could get out if she could get around with a walker, she started moving. Just needed some incentive. Bad news is that she will need a catheter and bag for her urine for the rest of her life. I was also there on Tuesday when we attended an organ concert and sing along. She seemed to enjoy that as much as I did.

I was up at 3am this morning and drove Anna and Andrew to the airport. They traveled with two cats and are safely at Anna's new appartment in Cambridge, MA this evening. Tommorow, they tour MIT and Saturday recover Anna's shipped boxes from Amtrac. Sometime in there they are looking to buy some used furniture since all of Anna's is still back here in our garage. They will rent a ZIP car minivan in order to move this stuff. Andrew will be back home to start his senior year in high school on Tuesday. Anna will be starting her second year of graduate study at Harvard Divinity School.

BMT Possibilities

Well, I had another blood transfusion this week (Wed) as expected. My hemoglobin was 8.8 on Tuesday when I went in a day early since I wanted to get the transfusion as soon as possible. I was dragging over the weekend though I made it to my mother's 89th birthday party at the nursing home on Sunday night. My platelets were up to 573 and my Factor 2 was up to 31. I missed a day of medication on Saturday and had a big spinach salad at the birthday party. This most likely is related to the rise. Spinach is high in Vitamin K which counteracts the Coumadin.

I also met with my doctor on Wed along with Marilyn and Anna. We discussed what is next and were discouraged from putting much hope in a BMT. Dr still wants to try other treatments first, initially trying a combination of anagrelide and hydrea. I have reduced my anagrelide to one pill per day, rather than taking alternating between 1 and 2 pills each day. This what we tried in early June when I went for 5 days before platelets hit an all time high. My expectation is that this will not help, but Dr will add some hydrea to compensate. I don't expect frequency of transfusions to change though I did go for 28 days at that time. It seems like medicine reduces both platelets and hgb.

The Dr did talk more about the possibility of a mini-BMT. In essence, they would use less chemotherapy and radiation so all of the old bone marrow would not be destroyed. The new donor stem cells would then battle the old bone marrow for dominance and hopefully take over. In this case, some studies indicate that it would be better to have a MUD (matched, but unrelated donor) than my brother donate the stem cells. The following Only Real Cure article (which I referenced before) describes this very well. It also indicates that my chances of survival could be between 30 and 60% after two years depending on how many penalty points I rate. I have not found any similar statistics for people receiving blood transfusions or the medicines that I am on. I will also need to add something like Exjade to counter the buildup of iron from the transfusions.

This may not seem very encouraging, but I am thankful for each day that I have. I have survived at least 5 blood clots in my lungs where the chance of death were about 20 percent for each one. By all rights, I am living on borrowed time, by the grace of God. Think about it for a new perspective on life each day.

Weekly update

Well, I had my blood tested on Wed with expected results. Hemoglobin is 9.5 with other components essentially unchanged. After the blood transfusion last week, it has probably dropped a point and will drop more by next week. I expect to see about 8.5 next Wed and get another blood transfusion. I also worked a full 40 hours this week, though had to come home for a quick nap this morning and take another when I got home this evening. I was also very itchy when I went to bed last night and woke up several times this last week with terrible leg pains. I have had a recurrence of canker sores and also frequent pimple-like sores that linger for weeks. These symptoms are typical of MPDs.

I also have an appointment with my hematologist on Wed and hopefully will get some direction on where we go from here. Not sure how much longer I can keep up these transfusions before I get iron overload or some other complication. (Interestingly, Marilyn is low on iron and will get extra through IV on Sept 1.) Maybe it is time to get on with the BMT. Certainly there will be a barrage of tests to check my health and the condition of my bone marrow.

Another transfusion

As expected, I needed another blood transfusion this week. After getting back from the lake on Monday and feeling drug out, I went for a blood test on Tuesday, a day early. My Hgb was at 8.5 so I was back in on Wed for 2 units of "red blood cells, leuko reduced and irradiated", the typical fare. My white cells and platelets were essentially unchanged in the normal ranges.

If the previous paragraph sounds familiar, it is. Identical to two weeks ago though I was not tired on Thursday and logged a full 40 hrs (including 8 hrs vacation) for the week. As before, it does not appear that the Rituxan is working, but have another 2 weeks before discussing a possible BMT with my doctor.

Like two weeks ago, I am also working more on the cars. Replaced the battery in the van last night and plan to replace rear struts on the Malibu tomorrow. I did replace the front struts two weekends ago and will get a full 4-wheel alignment after this.

I visited my mother at the nursing home on Wed and again tonight. She still has a bladder infection, but is progressing with physical therapy. My sister and I played Scrabble with her, but she beat us after 5 rounds.

Cycle Continues

Not much to write today, except for status on blood counts. Hgb is back down to 9.3 again, same as it was two weeks ago. After the blood transfusion, it probably went up to about 10.3 and then dropped a point during the week. A very typical cycle. I could have scheduled a blood transfusion for Friday, but planned to go to the lake cabin again, so that's what I am doing. When I get back on Monday, I will have my blood cross matched for a transfusion, probably on Wednesday.

My other blood factors remain about the same in normal ranges and prescriptions are same as well. Seems like just another week closer to a decision on a bone marrow transplant. Not sure how long I can keep up this cycle of transfusions, but while I do, the risks of a BMT increase.