AN IDLE COMMENT OR TWOEdit
Posted by Robert Jordan on May 21st, 2006 in the Robert Jordan's Blog category
Some of you don’t like my striped shirt, and some don’t like the braces but you’ll have to get used to both, boys and girls; I like stripes, this simple red-and-white isn’t even close to one of the full-bore stripes. With French cuffs. As for the braces, I adopted those some 20 years ago. A tailor in London was marking up the waist of a pair of trousers when I commented on the fact that I had trouble with trousers sliding down…and off “Sir has no shelf,” he replied, and I realized he was right. I have very little behind. Hence the braces. Though I will admit that I have to go get these trousers taken up. When I bought them, I weighed approximately 30 pounds more than I do now.
I am sleeping about 20 hours a day, and feeling ready to go back to sleep as soon as I wake, but I feel good enough to try bringing you all up to speed on how things have gone. Some of this will be repeat work, so bear with me. Those who’ve been there can consider it a recap with maybe a little extra that wasn’t there before. No jokes in here, or not very many. Just the straight ski-nay.
The first symptoms I am aware of occurred last Memorial Day. I was on my way to a charity fund raiser when I suddenly felt light-headed. I was afraid that if I did not stop, I would fall over, but since I was crossing an asphalt parking lot and didn’t want to fall on the hot asphalt, I decided to keep going until I reached the grass on the other side of the street. I got there, but along the way, buildings began to glow white and everyone I could see acquired a nimbus. I made it inside, paid our entry fee (total elapsed time about 1 minute) and sat down for a while until I could join the festivities. A weird occurrence, but I paid it no further attention.
Exactly one week later I was in the lobby of the theater showing Spamalot,five minutes to curtain. I went light-headed, and then I went blind. This lasted for about 3 to 5 seconds. [The blindness has not reoccurred, but I have not driven since. Three seconds of blindness at 80 is nothing I want to fool around with.] A lot of people (exclusively women) have asked why I didn’t go to the ER. The men I have talked to, including every male doctor, has understood. On the one hand, a night waiting in an ER and on the other, five minutes to curtain for Spamalot, original cast. A no brainer.
Still, on getting home, I went to my doctor, and she set up a full neurological work-up, a full cardio work-up, a full pulmonary work-up, everything she could think of. I aced them all. The techs started
frisking me on the possibility that I was sneaking in a ringer. No ringer, but golden test scores.
Then I went on tour for Knife of Dreams. I came home expecting to be five or six pounds up from where I started (3 meals a day in restaurants for five weeks), but I was nine pounds up. My cardio man put me in a Halter Monitor, which you wear 24 hours a day and which records pulse rate, blood pressure, and a mini-EKG. This showed that I had an irregular heart-beat with roughly 1.5 second gaps plus low blood pressure. When low blood pressure combined with a downward spike in the BP, the result was light-headedness.
The doctor told me to load salt, and it was a good thing that he did. First off, I put on 15 pounds in 2 weeks. Then I had an episode of light-headedness while seated, which had never happened before. Harriet insisted on calling the doctor, who said to meet him at the University Hospital immediately. I was check in with what turned out to be congestive heart failure, a buildup of fluid around the heart. Once I was put on lasix, I lost 35 pounds in ten days. I also was seen by Doctor Zile, the head of the cardio department, because my cardio man had just gone on vacation. It turned out that he was med-school buddies with a man named Gertz, who is the #1 man in the world on amyloids. The result of that was that I was tested for amyloids (bingo!) and aimed at the Mayo Clinic.
Now, we’re going to skip over a few things in here — my first mini-dose of chemo, two hospitalizations with dehydration, fever and chills so bad that it was taking me three or four attempts to grasp my reading glasses, etc.
The reason I’ve taken you step by step this far is that I got my first symptoms in May, my first diagnosis in December, and a confirmation of that diagnosis in January. That isn’t just fast, in the world of amyloidosis, it is blindingly fast. Many people take 3, 4, 5 or even 6 years to get to that diagnosis. I intend to start a small foundation aimed at educating GPs primarily. At the Mayo, they say that by the time they get an amyloidosis patient, said patient has been beaten up within an inch of his or her life. It shouldn’t be that way. I got lucky, but it shouldn’t depend on luck.
Okay. Back to the rendition.
After roughly a week of testing to see whether I was a viable candidate, they decided that I was. Then I began bone marrow stem cell collection. I was able to collect 9 million ml/kilogram of body mass, which I though was very low. They will do a transplant with a few as 3 million per kg body mass, but they don’t like going below 4, and they will not, can not, go below 2. I had been hoping to hit at least 12 million and preferably 16 million or even 20. Not until it was over did they tell me that people with amyloidosis often have trouble harvesting 4 million, and some can’t make the 2 million.
After this came two days of chemo. The drug used is melphalan. The old fashioned name is mustard gas. Yeah; same-same World War I. On each of those two days they give you just short of a lethal dose of mustard gas. There is nothing haphazard about this. They calculate exactly what it will take to kill you and stop just short of it.
This is the point where I got my hair cut the first time. You see, movies notwithstanding, if your hair does fall out, it comes in chunks and patches, not smooth sheets. I figured I’d keep control of what I could keep control of and had the barber do me with a razor.
On the third day, called Day 0, you get back some bone marrow stem cells. Your appetite has already gone away by this time, but you haven’t really noticed it because you’ve been hooked up to an aphaeresis machine for stripping out the stem cells. If you were a non-amyloid patient, they would give you more injections of growth factor, they same stuff they gave you to make you produce extra stem cells in the first places. Not if you are an amyloidosis patient, in which case the growth factor can make you put on 30 to 40 pounds of fluid in a day, in which case you are hauled off for congestive heart failure. This while your blood numbers (white blood cell counts, platelet counts, red blood cell counts etc) are headed through the floor. Not a good thing, as they say.
I’ve said that your appetite goes away during this, but this isn’t a matter of just hunting for what you’d really like to eat. You don’t want to eat anything. Nothing. Your favorite food? Forget it. You try to force something down, try to get some calories down. Protein powder, whatever, you choke it down. Only it still isn’t enough.
I went to the Mayo weighing 240 pounds, and that was 6 pounds lower than my trainer and I had established as my dry bottom weight. This morning I weighed 217 for the second morning running, and I am ecstatic. I didn’t loose anything.
I’m very grateful to those of you who sent Harriet a care package. More grateful than I can say. She showed it around, laughing sometimes. And sometimes crying. You see, she’s still afraid she could loose me. We won’t know whether any of the treatment did any good for at least six months, and probably not for a year. Until then, we hang on and fight. Her as much as me. She’s my whole corner team, cut man and all. Leaving the Mayo wasn’t the bell to end the fight. That was the end of Round Five, and Liston made it a nasty one. (I’ve alluded to it earlier, and I’ll let it go at that,) But I beat him back, got inside his rhythm by the end of the round. Is he ahead on points? Am I? I don’t know. I just know we’re fighting by the old rules. None of this 12 round kiddy stuff.
“Welcome to the Garden, Ladies and Gentlemen, for at least fifteen rounds of cham-pi-on-ship boxing. By prior agreement, this fight cannot end in a draw. The match will continue until one opponent either cannot come out of his corner to answer the bell or cannot answer to the mark by the count of ten.”
(And we got one of Marciano’s old refs, so don’t worry it’s going to be stopped on cuts. This guy figures if you step into the ring, you expect to bleed.)
Anyway. The pictures are not for life-style options. When I can grow the hair back, I will. The goatee may stay, but not the shaved head. The tattoo, maybe. The Harley? Oh, yeah, I’m pretty serious about that. Harriet seems to leaning to riding postillion.
Well, that about wraps it up for now. I’ll be back to you in a few days.
Take care, guys.
All my best,