Day 98 - Revised Test Results

I found out yesterday what I was told about a 50% reduction in plasma cells was wrong. There has been almost no reduction. I had 40% plasma cells in my bone marrow before the stem cell transplant. The 3/20/06 bone marrow biopsy diagnosis was 30 to 40% plasma cells, slightly lower than it was last December. The silver lining around the dark cloud is that the plasma cells are almost not multiplying. They appear to just be sitting there taking up space. This is being referred to as a plateau. The doctors at Mayo are hoping the plateau will remain for as long as possible. I will be going to Mayo clinic at least every six months for a check up so the doctors can gauge the progress of the disease and recommend further treatment when the time is right.

I would like to try to clear up some confusion if possible. When I was first diagnosed with multiple myeloma, I wanted to know the cure rate. The response to that was a blank stare followed by the statement, "It is not curable." It is bad enough to be told you have cancer but then to be told it is incurable. Don't get me wrong, I can still count my blessings because there are much worse diseases than what I have. For that matter, God could have taken me when I was a teenager. He had plenty of opportunities I am ashamed to admit. So, if you have the idea that the goal of the stem cell transplant was to cure the disease, I am afraid you are mistaken. If you can't stop a speeding locomotive, the next best thing is to slow it down. In other words, we are trying to keep what I have in the "chronic" category as long as possible so I can continue to live with it as long as possible. A miracle would be gladly accepted however.

"Myeloma" means cancer of the marrow. In other words, you have all these useless gamaglobulin cells (also known as plasma cells) which will not die as they are supposed to do because for some unknown reason they have mutated. They just continue to multiply until they fill up the bone marrow space. The speed at which they multiply is called the plasma cell labeling index and is expressed as a percentage. The proliferation of plasma cells crowds out the useful cells which produce red blood cells, platelets, and white blood cells. And as you know, a person can't live without a good supply of each of those. So, if you are confused about what plasma cells are and what role they play in the disease, maybe this information helps a little.

Day 97 - Test Results

Many times in life, we run into situations which are counterintuitive. In other words, things work backwards from what we would expect. You would expect a stem cell transplant to eliminate almost all cancer cells. But, 70% of the time, it doesn't work that way for one reason or another. For example, my plasma cell labeling index is 0.2% which is good in one respect because the disease progresses very, very slowly. However, the drug they use to kill the plasma cells, Melphalan, works especially well at killing fast growing cells. Therefore, if you have a slow growing cancer, you might not get as much of a response from the use of Melphalan as you would if you had a fast growing cancer. So, even though the slow growing disease is a good thing, it is resistant to treatment with Melphalan.

At 94 days post-transplant, my plasma cell count was reduced by 50% which is good. Since my disease seems to be progressing slowly, the plan now is to monitor it and do nothing until the conditions warrant action. Hopefully, by then, there will be new drug therapies we can use which will be more effective and have fewer side effects.

"Spring" Weather in Minnesota

Weather is always a good topic for discussion. The weather here in Minnesota has been nice to us so far. There is a heavy duty snow storm going on south and west of us which is being held at bay by a high pressure system north of us in Canada which is moving east to west and causing brisk northerly winds. The cold dry air is forcing the snow storm to go around Minnesota. The weather guys on TV all seem to be very glad of this development. They tell us the temperature is a bit low for this time of year - should be mid-40's rather than mid-30's for highs. Vinita and I are looking forward to a good "launch" tomorrow.

More later after I see my doctor...

First Day of Spring at Mayo Clinic

Yesterday, we flew from what seemed like spring at Columbus back to winter in Minneapolis. About one hundred miles out from Minnesota, we began seeing the blanket of snow that remained from the previous Wednesday when they got about seven inches. It gets down in the lower twenties at night and up to mid-thirties in the day time so the snow is hanging around. Fortunately, we don't have to go out. If we did and had to drive, it wouldn't be a big deal because the roads are clear. We rode the shuttle to Rochester from the airport in Minneapolis. Everything as far as you could see was under a pretty thick blanket of snow. We saw maybe a dozen or more snowmobiles, some being ridden and some parked beside the road, and snowmobile trails everywhere. Even the lakes which were frozen over were under the blanket of snow which, having seen the snowmobiles, reminded me of something I heard from one of the announcers during the winter Olympics.

They were recalling an incident a few years ago where a cross country skier skied onto an ice covered lake, broke through the ice, and drowned, or something like that. I can remember thinking, "How could anyone mistake a lake for land?" Well, now I know. Looking out of the shuttle buss window on the way to Rochester, it was somewhat difficult to distinguish the snow covered lakes from the flat land, and around here, the land is fairly flat. Even though a lake is considerably flat, I can see where it might be easy to mistake one of those for land if the lighting was fairly dim. You learn something new every day.

I am finished with all the tests they wanted to do on me for the checkup. The bone marrow biopsy is the crucial test. My doctor will reveal the results of the tests to me tomorrow so stay tuned.

Day 90 - Mayo Clinic 100 Day Checkup Next

This post will be for all of you who would like to know what is next for me. Next is my 100 day check up at Mayo Clinic. Vinita and I will leave Columbus this Sunday and arrive at Rochester Sunday afternoon. I am scheduled for a bone marrow biopsy and a bone density test Monday. There will be other tests I am not aware of now. Tuesday, I will visit with the hematology oncologist to discuss the results of the tests and what is next. Wednesday, we will return. The weather forecast for this area Sunday is light rain, no storms thank goodness. The low will be around 44 degrees with a high around 54 degrees. The same holds for Atlanta. There is a 100% chance of snow in Rochester today with a low of 8 degrees. Sunday, it is supposed to be partly sunny with a low of around 19 degrees and a high of 31 degrees. Hello winter!

Day 81

You know what they say. Time flies when you are having fun. What they usually don't point out to you is the fact that time flies with after burners and retro rockets! It is almost time for my 100 day check up, right around the corner, just a matter of days. It is exciting to look forward to the trip and all it's little surprises. It is also exciting (in a different kind of way -- sort of scary) to look forward to hearing what the doctors have to say about the results of my stem cell transplant which on the one hand seems like it happened last week but on the other hand such a long time ago because so much has happened since then.

My hair is growing out and is beginning to almost look like hair. There is so much gray it is still sort of invisible. I have found that any tiny length of hair no matter the color is welcome compared with a bald head when a stiff, cold breeze is blowing across it!

I'm almost over my first cold (rhinovirus) since I can't remember when. I have a very healthy respect for pneumonia so I can't say this round of sickness didn't scare me a bit. I managed to develop a nasty sinus infection which has responded well so far to levaquin. It has been two weeks and two days since I came down with the virus. About all that remains is slight chest congestion and slight sinus drainage. Of course, I don't like being sick for ten minutes much less ten days.

My oncologist told me last week I was doing very well in his opinion. My white blood cell count is in the normal range or it was last week when they did the test. I am still quite a bit anemic but I am hoping that will get better in a few months.

The city built a real nice walking/biking trail close to the river which has become known as The River Walk. It is about two miles long give or take. I walked it with my wife and one of our friends last Saturday. It was a nice warmish beautiful day for a walk. It was cool enough to need a sweat shirt if you weren't walking, cool enough for the mosquitoes to be out flying around looking for something to eat but not light and bite.

Anyway, we have been tossing the idea of getting bicycles around for a long time. We finally took the plunge so to speak and bought a couple of bicycles, nothing fancy, just something to get us up and down the river walk for fun. Of course, taking up bicycling is one of the last things they want to see a myeloma patient take up. I suppose compared with skateboarding and bungee jumping maybe it is relatively tame. It will give us something we can do together and get some much needed exercise.

Probably some of the best fun I have ever had in my life was on the seat of a bicycle when I was growing up. I must have spent almost every daylight hour (and some night time hours) on my bike during the summer. Of course I had to take some time out to play kick-the-can and army. When I was in the third grade, we would play Flash Gordon on a big oak tree stump which was left over from a big old oak tree which had blown down. It was the perfect make believe device to keep us entertained for hours except we only had about thirty minutes at a time until the recess bell range calling us back to our prison without bars they called a school house. Too bad we couldn't have had the same imaginative fun with school books as we did with old partially submerged oak tree stumps.

So, it's off to the river walk with us.