The worm turns!

Who'd a thunk? Less than a week ago, I was in the hospital, my left leg was a pain magnet due to the clot, my blood numbers (hemoglobin, white blood cell, platelet), were vying with the Dow-Jones Industrial average for basement-dweller status, and I wore a perpetual aspect of run-down, hang-dog loserdom. Today, I am an oupatient, my left leg is feeling better due to my first therapeutic shot of fragmin (today was the first time that my platelets were high enough to get the dose I needed, more than 3x what I have been getting), my blood numbers are as robust as a bull market index, and I have confident aura, as Mark Twain once said, of "a Christian holding four aces." The docs are now telling me that by early next week--Tuesday or Wednesday--they will be ready to turn me loose, and Florence and I will be able to go home. If you are among the dozens of friends and relatives who have sent or are contemplating sending cards, please direct them to us at home, rather than here in Rochester. If you just sent one, never fear--it will be forwarded. One thought as our adventure in Rochester comes to a close. Florence deserves so much of the credit for my coming through this ordeal in one piece. A single example: she slept in my hospital room every night so that she could be there in the morning to talk to the doctors on rounds, and be up on the latest. You know it's love when someone will sleep on a crummy couch, eat hospital food, get sleep interrupted, all when you don't have to, because you care that much about your spouse. It just goes to show that all you have to do is marry the right woman, and everything else you do will fall into place!

Clots and Shots is what I Gots

On February 17, I limped into my outpatient appointment, with a decided pain in my left calf muscle. Doctor Haman was not overly concerned, but ordered an ultrasound. The result showed a large blood clot in my left calf. Now, Dr. Haman was concerned, and ordered a CAT scan, which revealed a smaller clot in my right calf, and, more ominously, a piece of the original left-side clot that had broken off and lodged in my lung. Dr. Haman immediately ordered a filter to be inserted in the inferior vena cava, to prevent a stroke if a bigger chunk of the clot broke off. Then there was the problem of deaing with the clots. Normally, you would use IV heparin to respond to a clot of this size, but it would not be possible because my platelets were depressed from the chemo--so IV heparin would cause internal bleeding. The compromise was a single daily shot of fragmin--admininstered with great skill by nurse Florence herself!--which broke up the clots very slowly, but prevented internal bleeding. So, that has been the past week--recovering gangbusters from the transplant, but very slowly from the clots. As for clotting, it is a side effect described in the literature, but it is very rare, so no one was expecting it. Looking forward, tomorrow (Thursday) will be Day 13 post-transplant. Goals continue to be to get the the White Blood Cell counts up over 1000 for three consecutive days. Today, they clocked in at 300. And, of course, continuing to redcue the clotting is an ongoing priority.

My first thoughts from the other side...most important, this isn't the "recovered" Joel speaking, but rather, the very, very early phase of "recovering" Joel...the first gaps in the mist. The second thought is that irony is everything. You will remember that there were all sorts of dreadful side effects for which I needed to be prepared after the stem cell transplant. Nausea: in the past week, I had a couple of easily controlled bouts. Fever: not once. Loose Stools: a few easily controlled episodes. Exhausion: some, but never debilitating. Insomnia: not a bit. Inability to taste food, inability to consume enough calories to support oneself, and inability to hydrate sufficiently: I ate full meals and drank plenty enough to stay hydrated. My recovery has, in short, been one of the best that the Clinic has witnessed in years. Ah, but irony: with all of these ideal outcomes, why is it the case that I have not sailed through as as outpatient, but instead have spent the past seven nights hospitalized? And why am I still stuck in the hospital? I've promised my daughter Mariann that I will explain the problem that landed me here, but that will require an entirely new posting.

Down the slippery slope.....

Day three after the transplant, and I have a curious feeling that everything in the world is coated with a thick veneer of molasses. I feel my energy ebbing slowly away; the daily walk to the checkup at Mayo seems like a stage of the Tour de France; foods and drinks are starting to taste a bit off; my stomach is beginning to protest about what gets put into it. And most of all, sleep is starting to sound like the answer to every question that can be posed. "What do you wish to eat?" "I think I'll have a nap, thanks." By day 4 or 5, or day 6 at the latest, it will be all I can do to drink 10 cups of liquid per day and consume 1600 daily calories--maybe it will be more than I can do, until the white blood cells start to recover. If so, I will be hospitalized, so that these important matters can be managed by intervenous means. If I stumble through as an outpatient, it will only be due to the care of Florence and her support team. Our dear friends Frank Taylor and Barry Schroeder will be here days 4 through 6, to be followed by one of Florence's childhood friends, Nancy Stockdale, who will be here days 7-9, then Amy Upjohn will be back for her second round of support. There's just no substitute for caring for the caregiver--thank heavens that, due to our family and friends, we have that essential task covered! As for me, I am signing off for a few days of nastiness, with high hopes for better times on the other side. Thanks to all who have read, commented, prayed, and good karmaed in response to this blog thus far: I plan on completing it after I am once more among you, in the land of the living!

Since my last post, I have undergone the second infusion of melphalan chemo (on Thursday), and then the actual stem cell transplant (on Friday). The two chemo sessions have done their job of killing off the bone marrow and all of its contents. As a result, my white blood cell counts are dropping, and by Wednesday or so, they will be near zero, and will hover there until the transplanted stem cells begin to produce new white cells. This will mean that for a week to 10 days, starting Tuesday or Wednesday, I will be one sick puppy. I will be exhausted, my taste buds will be destroyed, so eating and drinking will become difficult, my hair will fall out, and there will be other, more disgusting side effects, not worthy of mentioning in a family blog! So, counting the day of the transplant as day 0, the real nasty times will begain day 4 or 5, and probably continue until day 15 or so. During that time, I expect to be too sick to blog or otherwise to tend to e-mail. Mainly, I'll be sleeping and trying to walk and eat and drink enough to stay out of the hospital. One interesting point about the stem cell transplant itself--since I am the "Stem Cell Stud," and collected in a single sitting, all of the 5,000,000 cells that were transplanted on Friday fit into a single large syringe. It was fascinating watching these cells flow through the IV and back home. It was also a bit of an anticlimax, for it took almost a month to do all of the preliminaries and testing and intitial therapies, but only ten minutes to do the actual transplant. So, gentle readers, I am feeling kind of like somone who is trapped on the railroad tracks and watching a freight train rumbling toward me, in incredibly slow motion, taking days to get here, but when it does....well, it will make an impression upon me, I am sure! I'll keep blogging until the train hits me--and will pick it up again after I recover sufficiently, probably toward the end of this month. My best to all readers--and my thanks for Florence, Amy , and Ann and Don Parfet for their superb care!

Skydiving, anyone?

Today was the first of two runs of melphalan, the chemotherapy that will wipe out the myeloma where it lives, in the bone marrow--but will wipe out the bone marrow with it. I came through with no nausea and all of my hair, although the doctors assure me that in the future, nauesea will move in and my hair will move out. One of my doctors also pointed out that this therapy was akin to skydiving: once you jump out of the plane, you can't react to the fear of falling by jumping back into the plane. No, you have to fall for a while at terrifying speed until you pull the rip cord and land safely. I see his point, and though it looks like that farm down below is getting bigger awfully fast, I'll just keep hand on rip cord ready to pull it. Stay tuned, folks, and hope for well-packed parachutes!

Run over by a turtle, or, the Stem Cell Stud!

I am reminded of the story about the snail that was stepped on by a turtle. When the police officer asked the snail how the accident occurred, he replied, "I can't tell you, officer--it all happened so fast!" For the past four weeks, Florence and I have been going through test after test, procedure after procedure, and it seemed that nothing we did was getting us closer to the ultimate goal. In fact, with the post-Cytoxan low I felt last week, it sometimes seemed that we were losing ground. Then, Sunday evening, we were run over by that proverbial turtle. I got a call from the lab about my CD-34 levels--that it is to say, the measure of the stem cells in my bloodstream. The goal was for the Neupogen injections to raise that level to 10 or higher. My score was a whopping 54. Feeling very manly indeed, I reported Monday morning for the first of five scheduled stem cell collection sessions. Watching blood flow out of your body into a machine, and not seeing it flow back for several minutes, was enough to rattle me. But flow back it did, although without the stem cells. That evening, the Bone Marrow Transplant Coordinator called me with the news that I continue to be one of those obnoxious Boomer overachievers: the goal was 8 million stem cells to be collected over five sessions, but I had bagged 10,240,000 in just one session! My dear sister-in-law, Amy Upjohn, promptly gave me a nickname that I kinda like: The Stem Cell Stud! Then, this morning, the staff at Mayo pulled out all of the stops, and scheduled the two key remaining procedures for this week: the melphalan chemo on Wednesday and Thursday, and the stem cell transplant itself on Friday. The melphalan will wipe out the myeloma, but will also wipe out all of my bone marrow. The transplanted stem cells will rebuild the marrow. However, the combined side effects from the chemo and the transplant with make for a couple of weeks of nasty and unavoidable side effects. All of this is daunting, but the great thing is that we are finally taking the decisive steps that will drive this disease into remission. That, dear friends, is worth a lot of suffering to achieve.

A stroll in the park--on Jupiter!

More of the same to report. My white blood cell count really crashed today due to the Cytoxan chemotherapy, so I feel as if I'm trapped on a planet with very strong gravity: every step, every movement, is a real effort. The docs assure me that I will feel better early next week, when the counts recover. In the meantime, I will be checked on Sunday morning to see how many stem cells are circulating in my bloodstream. If there are enough, we will start collecting on Monday, if not, we will continue with the Neupogen injections, albeit at a higher rate. It occurred to me today that this is my dear mother's revenge. I stopped taking naps at about a year old, when she desperately needed some sleep. Now, I'm making up for all those I missed. So, Mom, this nap's for you! And thanks to all who have been sending cards and notes--they really are a perk-up for Florence and me. Florence, by the way, has gotten over her cold, and is taking superb care of me.

Foggy and groggy, but main lined

Today is the day they warned me about--the day that my counts would get low as a result of the the Cytoxin pulse--and they were right. I awoke this morning feeling as if I was walking through a vat of molasses, and the feeling was made all the less pleasant by the low-grade pain that resulted from the installation of the central line yesterday. That paid off, however, when I went in for my daily injection of Neupogen, for they gathered all of the blood they needed through the line, and there was no need to stick me. So, after having napped most of the day, I'm still foggy, groggy, and sore, and looking less like George Clooney every minute. The good news is that the nurses who are giving me the Neupogen injections feel as if the stem cells are being stimulated by them--although we won't know for sure until Monday, when they test to see what I've got in my bloodstream. If there are enough stem cells in the bloodstream, we can start gathering on Tuesday. And again, the blessing is that collecting will be done through the main line. Collecting can be done through a traditional needle, as well, but I've seen it, and it is more closely descended from Ahab's harpoon, than a doctor's spindly chemo needle. Thanks, but I'm a main line kinda guy!

And now, the fun begins...

The adventure continues. On Friday the 30th, I had the "pulse" (as they call it at Mayo) of Cytoxin chemotherapy. Then, on Saturday, the 31st, I had the first injection of Neupogen, the stem cell stimulating factor that will make the stem cells migrate from my bone marrow into the bloodstream, where they can be harvested. So far, no significant ill effects from either, although the side effects of Cytoxin (hair loss and nausea), are generally delayed for a few days, and the side effects of Neupogen (bone pain) is cumulative, and with this being the first of at least nine daily shots of the stuff, I imagine that about Wednesday or Thursday, I may be one hurting puppy. In the meantime, on Tuesday, the surgeons will install a central line (also known as a palindrome catheter), in my chest. Two tubes will be attached, one to a vein so that chemotherapy and shots can be injected, and one to an artery, so that blood samples, and more importantly, harvesting of the stem cells, can take place without further poking of my hands and arms. These are big advantages, and other than looking like the spawn of alien every time I take off my shirt, there will be no drawbacks. So the schedule for the next week is a Neupogen shot every day (it's one of the few things that can't go through a central line), and the installation of the central line on Tuesday. Then, on February 9, they will see if I have enough stem cells in my bloodstream to try to collect them. If not, more Neupogen shots, and if that fails, another, just-approved stem cell stimulating factor will be tried. If it does work, on the other hand, it will be on to collection time--but that will be a story for another posting. I hope your team wins the Super Bowl--or at least that you enjoy the commercials!

And Now the Fun Begins...