Wednesday, May 30, 2007

BMT + 22

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

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

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

Tuesday, May 29, 2007

BMT + 21

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

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

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

Sunday, May 27, 2007

At home

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

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

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

Friday, May 25, 2007

Going home

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

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

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

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

Thursday, May 24, 2007

Groundhog Day 2

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

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

Wednesday, May 23, 2007

Groundhog Day

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

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

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

Tuesday, May 22, 2007

BMT + 14

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

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

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

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

Monday, May 21, 2007

BMT + 13

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

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

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

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

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

Sunday, May 20, 2007

BMT + 12

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

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

Friday, May 18, 2007

BMT + 10

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

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

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

Thursday, May 17, 2007

Day +9

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

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

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

Keep looking up.

Sunday, May 13, 2007

Day +5

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

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

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

Tuesday, May 08, 2007

Day 0 BMT

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

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

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

Friday, May 04, 2007

Status Day -4

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

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

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

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

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

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

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

Thursday, May 03, 2007

Status Day -5

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

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

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

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

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

Wednesday, May 02, 2007

Chemo going OK

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

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

Chemo Started

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

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

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

Tuesday, May 01, 2007

Central Line

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

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

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

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

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