Theoryland of the Wheel of Time

A running commentary on the Mayo Clinic. I had intended to post before this, but it didn't work out. This began life as bits and pieces and notes I intended to use. It turned into something a little different. Sorry about that. I hope it's coherent.

The first week has been interesting. If you find needles interesting. There have been other sorts of tests—X-rays literally of every bone in my body; a pulmonary function test with me coughing all over the place and the tech sighing and saying "Well, let's try again then;" vast collections of urine—but mainly it has been the needles. I've been pursued by people with needles from dawn until sunset at the least. Sometimes they don't hold to those limits. At one point I was sent back to a particular station because the phlebotomist had drawn only a quart and not the quart and a half that had been in the orders. God's truth. I swear. Still, they say I seem to be healthy. For somebody in my condition, anyway.

I've gotten two bits of outstanding news. As of two months ago, my heart wall had thickened to 17mm rather than the normal 10-13 mm. On one side that has now shrunk to 14 mm. This is unheard of and has evoked murmurs of measuring errors, which I don't see Mayo making. The other bit isn't open to any arguments. The ejection fraction is the percentage of the blood in the heart which is ejected each time the heart contracts. Normal is 50%-65%. Two months ago mine was 48%. It is now 67%!

Second week began with getting an Ash Split shunt put in my chest. I wanted to avoid this, but the nurse-coordinator convinced me that it's going to be necessary come time for chemo and re-implanting the stem cells, so I decided to go ahead and get something that will do not only for those things but for blood samples, the necessary transfusions and so forth. I now have a couple of tubes dangling from my chest on the upper right side, with the far end going directly into my jugular vein. I've been telling people at home that I have a tap on the side of my neck leading straight to my jugular, and that this is attracting a great deal of attention from the Goths on staff, not to mention the vampire wannabes. The tap may be a joke, but the Goths and vampires, now.... You can tell from the way they lick their lips when they look at your neck.

The unit I'm working with really does have vampires. Witness all that blood gathering. And they always want to start it before the sun is up, meaning they're safely indoors come sunrise. They call themselves BMT, for Bone Marrow Transplant, but I have deduced the real name. Bacon, Marrow and Tomato. They're good people, very conscientious, but be careful if you have lunch with them. Very careful.

From then on it's been a matter of getting injections of growth factor twice a day to stimulate growth of bone marrow stem cells, and in between spending five hours a day hooked up to an a-pharesis machine for harvesting stem cells. The area isn't too bad, really. WiFi is available, plus small TVs with first run movies. Harriet can sit by my bed so we can talk, or read. My plan is to stick to books, mainly, and maybe get off a blog entry to you guys.

The Ash Split didn't go in so smoothly as I hoped. I woke up about midnight Monday night, the first, and found a damp patch of blood on my bedsheet about the size of a dinner plate with another on my pajama top. (For Deadsy, this is being worn only to protect the shunt; I don't wear pajamas. That ought to settle her down for a week or so. Or maybe get her hyperventillating?) Needless to say, with the end of the tubes in my jugular, I was a little concerned. We went over to Rochester Methodist, the hospital attached to the clinic, where I had the dressing changed. Three times before we got the bleeding quieted down. It's never simple with me. Harriet likes to point that out from time to time. But then, I told her if she married me, it would never be boring.

That meant no sleep to speak of before heading into my first day of collection. I slept instead of messing with the computer or reading. Slept after I got back to the hotel. Collapsed after dinner and went to sleep at about 8:30. A few more bleeding problems on day two, plus I slept again. That begins to get on your nerves after a bit.

Got some explanation from the collection staff about why I've been so tired. For one thing, the effects of the growth factor, over-stimulating the bone marrow's production of stem cells, is extremely tiring in itself. On top of that, the machine pulls all of the blood out of your body roughly three times and pumps it back in. During this five hour process your cardiovascular system tries to maintain a steady blood pressure. It can't because all of the values are shifting constantly, but it keeps trying. The result is that each day is the equivalent of running a marathon. Two marathons down in two days, and we'll see how many to come. I can't really think of much besides when I can go back to sleep. Have to get my head straight. Can't let it go on like this. Straighten up and soldier, soldier.

This is getting a little jumbled together as I go back and make additions or corrections. I'm not sure I can keep the time line straight myself. Sorry about that. In Australia a while back I was mad enough to sign up for a hike to the Valley of the Winds, not far from Uluru. We made it in and out in a little over two hours, each of us with a liter of water, and only then did I see the sign which cautioned hikers to allow a minimum of two hours for the hike EACH way and drink a minimum of one liter of water per hour. Before heading in, the guide told us that she sometimes forgot that the people she was leading weren't as fit as she was. "So do try to keep up," she said. I'd get the time line straight if I could, guys, if I had time, but in the meanwhile, do try to keep up.

For the basic transplant, they want 4 million stem cells. Using 8 million or 12 doesn't do any better. They will go with as little as 2, but they don't really like it. I asked what the top one day collection was and was told that, very rarely, somebody produced over 20 million. That was my first day goal, but I missed it badly. 4.17 million. My doctor, Suzanne Hayman, has signed off for a collection of 8 million, but I'm arguing. Not for 20, now, but for 12-16 million. That would give me a full transplant with two or even three in the freezer just in case. They very seldom do a second transplant for amyloidosis, and have never done a third, but given the rapidity with which the treatments change, I want to be ready for anything.

Doctor Hayman signed off for 12 million. She says she's happy to go with 3 million for a base transplant. We're on track and running hot and true.

Got my second day collection report. Barely 2 million. I'm going to have to pick up the pace. Dr. Hayman won't approve an increase in the growth factor. I understand even if I don't like it. It does have its side effects. They'll only listen to me so far as to what risks I'm willing to take.

Third day collection reports in. Only a little over 1 million. Looks as if I'm definitely on the downhill slope of production. There's still a chance, though. Production can fluctuate. Additional bad news. I put on ten pounds yesterday. That's fluid retention, one of the side effects of growth factor. I've been fighting that with lasix, keeping the weight under control pretty much. Until now.

Trouble breathing on the night of the third collection day. Couldn't get to sleep. The fluid presses on the diaphragm, so the lungs can't work properly. Harriet got me across the street to the hospital where they put me on oxygen for the night. Tomorrow (fourth day; today, actually), will be the key. Can I pull up my production numbers?

Fourth day production numbers in. I'm down to 700,000 plus. Time to face facts. The number will continue to drop. In a day or two they'll tell me the tests show I won't make the minimum number for harvesting. I'm not going to make 12 million, much less 16. And they're giving me extra lasix to help control the weight, though so far it just seems to be helping me hold my own. The growth factor could very easily put me into congestive heart failure with the fluid retention. Been there, did that, didn't like it. Time to pull the plug, says I.

They don't let you know anything discouraging before they have to around this place. God bless them. Turns out my 8.6-8.7 million wasn't so bad after all. Turns out that a lot of amyloidosis patients can barely make 4 total. Turns out a lot of them can barely make 2. Seems I didn't do too badly after all. Hey, the kid can always pull it out when he needs to. Bring it on, Jack. Bring it on.

The weekend is mine, except for a few blood tests and some fragmin (blood thinner) shots. I don't think I'm up to Easter services—plus, I have to get some blood tests done during the hours of services—but I've made reservations to take Harriet to Easter brunch. And Will. Our son has flown out to visit for a week. God, it's good to see him.

Monday I have interviews with various doctors and others. The reason, I think, is to give me a final thumbs up for the chemo, to begin on Tuesday. Knock wood.

Looking around me here, I see a lot I'd like to think I would have noticed before, but I'm not sure I would have. I remember Harriet exclaiming in horror at Feng Du, in China, when the tide of crippled beggars came flopping toward the boat landing like a tide of Medieval horror. I barely blinked. They weren't the first crippled beggars I'd seen. But day or so ago I saw a young woman pushing an older woman in a wheelchair while leading a younger woman (her sister? Her daughter?) by the hand. It was painfully obvious that the youngest woman, the girl, was mentally challenged. Some people just get handed loads that can't be called fair in any sense of the word. But both older women were smiling. I've talked a lot about fighting, but I'm not the only one by a long country mile. You can pick them out, sometimes. The elderly man with a few wisps of white hair shuffling along behind his IV tree, mask in place and eyes fixed on something ahead. The little girl huddled in her wheelchair clutching her stuffed bear as she is pushed from one appointment to the next. And her eyes are so big. As big as half her face. She ain't here to get a hangnail clipped, Jack. This place is chock full of fighters. I'm proud to be in their company.

Had a letter from the Mayo forwarded to me. Seems some of you have given money on the name of James Rigney. I'd like to thank Mr. Chris Mardle, Mr. Matthew Longland, Mr. T.J.Rowe, Mr. Fredrik Trobo, Mr. Dennis Clark, Ms Krista Baker, Mr. Phillip Johnston, Mr. Kenneth Spores, and Mr. Thane Hecox. Thanks to you all very much, truly from the bottom of my heart.

Had my interviews with the doctors. I'm good to go. Tomorrow morning, 9 am. Let's boogey. Let's boogey.

RJ