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.