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.

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. I did not have my blood clotting checked, but will next week.

I went back to work 4 hours after the transfusion, but then on Thurs after lunch, I felt tired and went home to bed for the afternoon. Today, I felt fine and worked 9 hours. Tomorrow, I need to work on the 97 Malibu's front suspension which appears to have broken a spring.

Overall, it does not appear that the Rituxan is working, but will give it another 4 weeks before discussing a possible BMT.

I visited my mother at the nursing home on Wed and Thurs nights. She now has a bladder infection, but seemed to be more alert last night. When I got there, she was getting a shower and then stayed up until 9 pm with me while we watched "America's got talent" on TV. I did not make it there this evening, but instead got Marilyn's computer data recovered from her burned out eMac. That's another story that I plan to put on my neglected Njerd blog.

Fish Biting - Clouds

Andrew and I have been at the cabin on Grace Lake near Bemidji since Friday night. Planned to go back home on Monday, but may be tempted to stay a while. Temperature was near 80 yesterday and made it to about 87 today in the shade. I took the thermometer down to the lake where the water temp was at least 79 and the temp in the sun was close to 100.

The fish were biting, but I was not fishing. I think the crappies and sun fish in the lake have been cross-bred with pirrahna. When I walk into the lake, they swarm around me. If I stand still they try to nibble on my lake shoes, swim trunks and a dark growth on my shin. When I float in the inner tube, they try to bite the moles on my back. If I float on my front, they will "nibble my nipples". They are pestier than any of the flys. Thankfully, I have not seen a mosquito. Must be too dry.

We have a rubber raft that works ok to put something between my body and the fish, but it was too windy today. I quickly became winded trying to paddle against the wind just to stay in front of the cabin. Then I thought of a solution. We have springy steel and wicker style recliner. When on the porch, it springs back so far, it is almost impossible to get out of. But when placed in about a foot of lake water, it works beautifully. The waves cause it to bob up and down, scaring away the fish and continously splashing water to keep me cool. I placed it under the white birches that overhang the lake and provide shade.

So where do the clouds come in? While cooling off in the lake, I looked up to the heavens and saw several types of clouds. Low in the sky were the cumulus clouds which seem to be constantly changing and could develop into cumulonimbus storm clouds. Just like troubles in our lives, these tend to block out the sun for a while and may develop into bigger storms. But high in the sky were some cirrus clouds at 20,000 feet or higher. These wispy clouds generally occur in fair weather and appear to me as angel's wings, showing God's grace and protection above all of my troubles. Also when next to the lake and when driving here through some wide open farm country, I could see the clouds for miles. There may be a cloud above my head blocking the sun, but not too far away, I can see the sunshine. Quite a change in weather from my "Son Shine" post of Feb 19.

Delayed Status

Sorry that it has been 11 days since the last entry, but life has been slow. The Summer is half over and we are half-baked with about a full week of 90+ degree weather. It was actually 100 on our thermometer a couple of days. We finally got about an inch of rain and temperatures back in the 70s. Forecast looks more moderate for the weekend when Andrew and I will be up at the cabin. I pick him up from Bible camp on Friday and we head up to stay until Monday.

My energy is marginal for the weekend since my hemoglobin was 9.3 today, not quite low enough for a blood transfusion which I certainly will need next week. It only has been 13 days since the last transfusion and my Hgb only dropped from 10.0 last week. Maybe the Rituxan is taking effect and next week will be a good indication. My other counts are in the normal range with white cells at 4.9 and platelets at 436. Last week, my clotting Factor 2 was right on target at 20 so I am not getting it checked every week.

Since I reported on July 5, my mother has been moved to a nursing home and is doing well. She is now getting around some with a walker and had the catheter removed today. We played Scrabble Friday night and went to the chapel service on Sunday morning. When I left this evening she prayed for many people by name, mentioning facts in their lifes that we had discussed recently. May God bless her and give us some more time to enjoy her company.

Well with my soul

Marilyn and I are at the lake cabin. The moon is just rising in the East even as the sun is setting in the West. It is almost full and looks like it will be a clear evening to enjoy it reflecting off of Grace Lake. It has been a beautiful though hot day, close to 90 degrees, but will be back down to about 60 over night.

We have Anna's old iBook laptop with all kinds of music, video and podcasts stored in iTunes. One podcast from the Speaking of Faith public radio show caught my eye. I fired it up and we both were truly blessed. It was a interview with the late singer and educator Joe Carter, an expert on the African American Spiritual. He explains the origin of the spirituals and sings many of them.

He tells a story about Elijah and a woman who's son had died. When he asked her "How is it with thee?", she answered, "It is well with my soul!" He said that this is typical of especially older people who really have faith. This reminded me of my mother, though with all that she has been through in the last couple of weeks, does not complain. She sets a good example for me, reminding me that all that matters is the condition of my soul.

If you wish to listen to this podcast, you can download it to your PC at the Speaking of Faith web site. You can also listen to his music directly on line.

Blood Needed - Mom OK

I was in for my third Rituxan IV this morning at 7:30 am. Finished at 11:30 and was back to a meeting at work by noon. Worked two hours through VPN network this morning and six this afternoon. My weekly bloodtest showed an Hgb level of 9.1. It was 8.2 last Wednesday causing me to have a blood transfusion last Friday. It may have dropped to 7.8 or less by Friday and possibly increased to about 10 after the transfusion. Anyway, I will have another blood transfusion tomorrow, making it the shortest time (six days) between transfusions, not considering when I received 4 units over 1 to 2 days in the hospital. Each transfusion is normally 2 units, making this 35 total units over 17 transfusions since June 2004. Trying to keep the average Hgb higher, especially since I would like to go to the lake cabin on Friday.

While I was getting my IV, my mother was getting a stent put into her right carotid artery. Everything worked out OK and they even were able to retrieve the remainder of the old clot during the procedure. Thank God for an answer to prayers. I am heading out to visit her right after posting this blog entry.

Wild Wednesday

I was in for my Rituxan IV on Wednesday. It only took 4 hours, from 12 noon to 4 pm, since I had no reaction last week and they speeded it up. My blood test before the IV showed that my Hgb had dropped to 8.2, from 9.6 last week, so I also had 2 units of blood this morning. My white cells were 3.7 (just a little low) and platelets were 503 ( a little high and exactly the same as last week).

What made Wednesday wild was that both my mother and mother-in-law were in the hospital at the same time as I was. My mother-in-law was just coming home on Wed afternoon, but my mother was admitted after being taken to the emergency room on Tuesday night. She had a mini-stroke and lost a little control of her left hand. They discovered a blockage in her right carotid artery to her brain by using a CT scan. They did an angiogram on Wednesday afternoon and would have put a stent in, but discovered a large blood clot that was in danger of moving to the brain. Instead they gave her Plavix and heparin to reduce clotting and try to dissolve the clot. We discussed my blood clotting problems with the Doctor who did not think there was a connection.

My sister and I were visiting with her early Wednesday evening when she started to have difficulty speaking and yawned deeply. Her blood pressure dropped quickly and she passed out. This was shortly after 7 pm in the middle of a nursing shift change so she received plenty of quick attention. My other sister and older brother showed up just as this was happening. We thought that this was the big one and were prepared for her death. She was prepared as well and has mentioned frequently that she has had a good 88 years and is ready for heaven to join my father who died 2 1/2 years ago.

But God had a different plan. The drop in blood pressure was due to bleeding into her abdomen. Possibly the blood was too thin or the femoral artery was damaged during the angiogram when they ran a catheter from her groin up to her neck. Anyway, they gave her five units of blood and reversed the blood thinning drugs. By 11 pm when I left she was talking and moving fingers and toes. A CT scan showed that there was no stroke, but are concerned because of the possibility of more clotting. I saw her again at noon today after my blood transfusion and she is eating and talking fine. They are planning to try the stent again next week, but say she is a time bomb waiting to go off. God’s plan did allow my younger brother time to get here and visit with her some over the past two days. It also has allowed us more time to discuss what life care directives should be used in a situation like this.

Rituxan & Purgatory

I had my first Rituxan IV treatment on Wednesday, starting early at about 8 am and finishing about 1 pm. They took it slower this first time and indicate it will speeded up next time. They started earlier than originally scheduled since they wanted more time to observe me, but observed me less than I normally get during a blood transfusion. The nurse took my blood pressure before starting, but that was all for the duration of the treatment. No temperature or any other follow-up. During a blood transfusion, my vitals are checked at least three times for each unit of blood. Actually, I was in a chemotherapy room with at least 12 patients and about 4 nurses. Observation was probably visual while asking me frequently if everything was OK. After the initial introduction of Rituxan, there is probably less risk of reaction than with blood from different people each time.

Before the IV, I also had my weekly blood test. My platelets were 503 and white cells were 4.4, both improvements since last week. My Hgb has dropped some more to 9.6, probably indicating another transfusion will be needed next week.

On a sad note, I attended the funeral of a co-worker that died of lung cancer last Sunday. He was 62 last Thursday, had worked for our company for 39 years and was taking early retirement at the end of this month. Over the past year, my office was close to his and we talked at least once a week, though his work time was very sparse since the first of the year. We often reminisced about the all the changes in computer technology over the years.

He had not been to work for three months and I had last called him at home almost two months ago. Thinking back, I wish I had been a better witness to him though I did direct him to this blog. He had a Catholic funeral mass this morning with very good attendance. Very little eulogy by the priest and an emphasis on baptism and communion as guarantee of eternal life. Made me remember childhood arguments with our Catholic neighbors about Purgatory though there was no mention of that at the funeral today. I am just thankful to be saved by the grace of God through Christ’s death and resurrection without needing to depend on others to speed my passage through the torment of purgatory.

More Rituxan Info

In researching background materials relative to my upcoming Rituxan treatment, I came across a great web site, named CLL Topics, covering CLL (Chronic Lymphocytic Leukemia) but also has information about Stem Cell Transplants and Rituxan treatments. It also has warnings about the Procrit that I have been taking for the last ten months. Please note that a lot of this relates to patients with leukemia or tumors, neither of which I have. My white cell count was back down to 5.3 billion per liter last week where the normal range is 4 to 11.

My main problem now is AIHA (Auto-Immune Hemolytic Anemia) that is requiring my frequent blood transfusions. The article that brought me this web site included Rituxan treatment for AIHA, plus also describes previous treatments of prednisone and IgG that I have had. Easier reading than most of this stuff if you are interested.

My Rituxan treatment starts Wednesday at 7:30 am. It was originally scheduled at noon, but they wanted more time to observe me before letting me go home. I may be there all day.

Good week

It has been a good week after a little vacation at the lake cabin near Bemidji. Went up Saturday and came back on Monday, missing the traffic. Beautiful evenings with the full moon over the lake. We beat back the lawn and weeds with surprisingly no mosquitos or wood ticks to bother us. Though it was cold with a high of about 65 degrees, the water temperature was 70 and I took a quick dip to wash up on Monday morning.

My blood test yesterday was pretty good as well. My hgb was still up at 10.8 and my platelets had reduced to 643. White cells and Factor 2 were in normal ranges. I talked with the doctor today and will be scheduling the Rituxan IV treatments for 4 weeks starting next week. I have read a little about it, noting about a 40% success rate with a small study for anemia at Mayo Clinic. It has been used with 730,000 patients over 8 years, but a few have had fatal reactions during the first dose. I have a good history of no allergic reactions to medications yet, so it is worth a try. Your prayers are appreciated.

Rituxan

I saw my hematologist today and received a couple of surprises. First, my Hgb was 11.5, the highest that I have recorded. Unfortunately, my platelets were also the highest at 1050, up from 359 just last Friday. White cells and Factor 2 for clotting have remained unchanged. So I need to increase my anagrelide which I just reduced on Friday as well. It is very surprising that the platelets would increase so fast, but may be affected some by the Levaquin antibiotic that I am still taking for the pneumonia.

The doctor also said he has one more thing to try, Rituxan, which is normally used to treat non-Hodgkins Lymphoma. Seems like there has been some success for treatment of autoimmune hemolytic anemia (AIHA) as well. He is still waiting for more blood tests taken today before moving ahead, maybe next week. If Rituxan does not work, a BMT in the September timeframe is the next alternative. I am investigating further.

Last IgG

Since my last entry on Wed, I worked for 5 hrs on Thursday before getting tired. I came home for a nap and then spent a couple of hours cleaning maple spinner seeds out of the gutters and front lawn. I did not feel too bad though did not sleep very well last night. This morning I was up at 5:30am and the day hospital by 7:30am. I had both an IgG IV and two units of blood while getting in a couple of hours of work remote using my laptop. Would have done more, but did not have much to work on. Not much activity at work either on a Friday afternoon.

My blood analysis was all positive today. White cell count was down to 8100 from 26000 on Sunday. Hgb was surprisingly at 8.7 before the transfusion so should be 10.5 or more now. It was 8.4 on Wed, but may have been diluted by all the fluids they were dripping in me. My platelets were down to 259, right in middle of normal range of 150 to 450.

My hematologist stopped by at noon for a quick visit. Anyway, he said that the IgG seemed to be ineffective since I was now having transfusions every two weeks. So no more IgG. Also since my platelets are back under control, he reduced the Anagrelide to one .5mg pill a day. This essentially puts me back to January when we started experimenting with Prednisone, variations on the AG and IgG. Only difference is Levaquin antibiotic I take for the next week. I have a monthly appt with him next Wed when we will regroup and decide what to do next.

It was also great to have my sister and mother stop by for a short visit after lunch to break up the monotony. It was another 9 hour day watching drips after 72 hours of the same earlier this week.

Home again

I just got home from the hospital. Marilyn picked me up about 4:15 and we stopped by McDonald's for a Flurry. First thing I did when I got home was to water my bushes. All of the storms on Memorial Day missed us here though maybe we will now get some rain tonight.

On the health front, my temp is 98.6. It was 101.8 early this morning, but reduced by Tylenol to 99 by 11am. White cell count was down to 11,000 from 26,000 on Sunday. I am on an oral antibiotic to finish off the pneumonia. My Hgb was down to 8.4 and the hospital doc thought they would give me blood this afternoon. He was surprised when I said no, because it would take at least a day to get a blood match. Then they were going to do it Thurs PM after my IgG IV in the morning. I then called the Hematologist office and they postponed it all until Friday.

I connected my computer to the office and worked about 3 hrs remote today. If I feel ok in the morning, I will go into work. If get tired, I will come home for a nap and possibly work more remote later. Of course, I can work from the day hospital on Friday as well, to minimize taking sick leave. Seems like I always get sick on a weekend or holiday, but that does minimize using sick leave. Actually, if I take more than 3 days sick leave spanning before and after a holiday, the holiday is counted as sick leave as well. That happened to me over Thanksgiving back in 2004.

Pneumonia

The detour is more complicated than I suspected though it was a good idea to stay home and not travel. After helping Anna move on Saturday, I felt a sore throat starting. Sunday morning, I could hardly speak. Went back to bed and by noon, I had the chills and a temperature of 101.5. When it reached 102.8, we called the triage center and headed for the emergency room. Temp peaked at 103 before they started antibiotics. Xray and CT Scan showed that I had pneumonia, but no blood clots. My Hgb was 10 and white cells were 26000. I have gone through a couple of days of antibiotics and cycles of chills and sweats, but feel pretty good at the moment. But then just 4 hours ago, my temp was back up to 101.8 but just now was 100. I may have a few more cycles of temperature swings before this is over. Doctors just breezed through as well, said I would go on an oral antibiotic and that I could probably go home tomorrow. I told Marilyn that she should know I was sick since I had not been on a computer for two whole days.

Detours

While I had planned to travel to my childhood home in Michigan this weekend, I have decided to stay here in Minneapolis. Last night, I attended a 3 1/2 hour high school band and choir concert including an awards ceremony and ice cream social. While seated in the cramped auditorium seat, I felt a few pains in my legs. Later at home I felt a little pain in my chest. During the night, I woke up with terrible cramps in my legs. After a trip back from Boston last year, I felt the same way and another blood clot was discovered in my lung. While I don't feel too bad at the moment, I decided it was best to avoid driving 7-8 hours and stay near my medical support.

There is a lot happening around here this weekend as well. I will miss the fellowship with my mother and siblings, but will enjoy being with my wife, son, daughter and friends. Besides, it is our 35th wedding anniversary on Monday.

While sitting here, watching the TV and cruising the internet, I happened upon a page of the Urban Network Gospel News where there was a clip playing of Bishops Joel Trout's sermon titled "Detours". You can listen to this sermon plus others here.

No matter how you plan your trip through life, you have to take the detours. What seems like a detour for you is God's planned route for your life. It is in the detours that you find God.

Don't Do That!

There is an old joke by Henny Youngman that goes:
The patient says "Doctor, it hurts when I do this." "Then don't do that!"

That's essentially what the neurosurgeon told me today after looking at the MRI of my neck. I have numbness in my neck since back in March. He looked at the MRI, said that he did see arthritis bone spurs, but did not see any that could be causing the numbness. Since it only goes numb in certain positions, he suggested that I avoid those positions.

You may remember that my hematologist thought it was shingles back on March 29. Then I saw an orthopedist on April 13th that said he could not do anything about the arthritis in my knees and that he didn't do necks. The orthopedist could have used another one of Henny's jokes:
"Doctor, my leg hurts. What can I do?" The doctor says "Limp!"

I think both doctor's are not going to do any elective surgery because of my blood clotting problems. Both problems are minor annoyances compared to bigger blood problems.

My hematologist said I don't need another blood test this week and can travel to Michigan this weekend. Just have to get out and stretch every 90 minutes. Next appointment is June 1 for another IgG.

More blood

I had another blood transfusion this morning, starting at 7 am. It went pretty quick so that I made it to a luncheon at 11:30, part of a conference where I spent the afternoon. A blood test before the transfusion showed that my Hgb was 8.2, higher than I thought it might be. I also found out that my Hgb was actually 8.9 on Thursday, not the 8.4 that I had been told. With two units of blood, it should be over 10 by now. I am supposed to have another blood test on Thursday and will then decide what I do this weekend. I would like to travel to Michigan with my mother and the rest of my brothers and sisters over Memorial Day.

Rewind two weeks

Well, I am right back to where I was two weeks ago. Had an IgG IV today, but the blood test showed my Hgb was down to 8.4. Exactly two weeks ago I had an IgG IV and Hgb was 8.2. So today they took more blood to test and I have to go in tomorrow to give more blood for a cross match. I will back in at 7am Monday for more blood. Not sure on the other blood factors, but no one has instructed me to change medications. Doesn't seem like this IgG is helping any.

I have now had 14 transfusions, 29 units of blood on an average for every 32 days in the last year. Average this year is every 22 days. Shortest time between transfusions was 12 days in September, then the longest was 112 days from then until January. I had just started Procrit in August so it probably just started working in September and may now have lost its effectiveness.

What's next? Maybe a BMT.

Hgb back up

Well, I had a blood transfusion on Monday and a blood test today. My Hgb is back up to 10.5 and my platelets are 446 (holding steady). Since my Hgb was 8.2 last Thursday and it would have dropped further during the 4 days before my transfusion, it appears that the IgG is working. The two units of blood should have raised the Hgb about two points. It will be interesting to see what it is next week before I get some more IgG.

I also had a birthday, turning 58 on Tuesday. I am thankful for all the cards and gifts that I received, but primarily that I am still with all of you 18 months after my initial blood clot in November, 2004. Thanks for all of your support over that time as well.

IgG but blood still needed

I was in for another IgG IV today and also had a blood test. Turns out my Hgb was down to 8.2 so need to go back tomorrow for blood typing and have another blood transfusion on Monday. My platelets were now down to 441 which is within the normal range. My Factor 2 for clotting was 28, a little high so had to take extra coumadin tonight. The IgG along with low Hgb made me so tired that I went home and took a three hour nap.

I was able to work on my laptop through the wireless network at the day hospital so only took 1/2 day of sick time. Over the past 12 months, I have taken about 130 hours of sick time. This has been minimized only by working 9 or more hours on days that I did not have a medical appointment.

I have kept a log of all medical events over the last several years. The log has 147 entries. I had 70 entries for all of last year and already have had 40 so far this year. While I cannot complain about a lot of pain and generally feel good, I am getting tired of an average of 2.5 appointments per week.