Ending As We Started

One year ago on this very day I had my first treatment of ABVD chemotherapy. Hard to believe it's been a year. Six months of ABVD chemotherapy, two months of ESHAP chemotherapy, one course of high-dose Melphalan, one stem cell transplant. I think I went one month - July - without any cancer-related things being done to me, but it was hard to enjoy because I was pretty sure my cancer wasn't dead and was making a comeback.

Today my treatment plan for the second transplant was signed off. I will be admitted to the hospital at 8 AM Tuesday to start seven days of high-dose chemotherapy. On the eighth day they'll put the poison away and give me the stem cell infusion, which I know from previous experience is no picnic either.

Monday I have to start taking high-dose anti-seizure medication. Apparently the chemo drug they will give me on the first three days can cause seizures. The chemo drug is also either derived from or mixed with alcohol; the doctor said "you may feel a little drunk throughout." Wow. Three days of drunken seizures - what part of that wouldn't appeal to the average wino? That ought to give my visitors the creeps, me alternating between drunken giggling and seizures, probably with some desperate vomiting thrown in from time to time.

After it's all over (the chemo and the stem cell transplant) they'll then send me back to Dr. Adoo, my first oncologist, for radiation therapy.

I guess the point is that I'll start 2010 the way I started 2009, equipped with cancer and doing chemo. But this much is true: my cancer today is very much reduced compared to last year. Last year I had nodes in my neck, shoulders, internal organs and elsewhere, and couldn't bend in certain directions without experiencing agonizing pain in my left kidney and right lung. Today I can't find any nodes at all. My doctor thinks she can feel one in my groin (sounds like the premise for a bad pornographic novel) but I tend to disagree. It doesn't feel like a node to me, but then again, I'm not board-certified either. But even if it IS a node, it's a small one, and it's only one, which is a huge improvement over last year. And my doctor as much as said that they never expected the high-dose Melphalan to kill the cancer outright, but merely to "de-bulk" it so the upcoming seven days of chemo can kill it.

So. I have the equivalent of a three-day weekend left to me before I go into the hospital and start the real chemotherapy. It's going to be unpleasant, but the only way out of this mess is to keep moving forward. Besides, how bad can it be? I've suffered every indignity imaginable from past chemo treatments (I've been wearing Depends since my second round of ESHAP, for example) and I can't imagine that this chemo will bring any new outrage. And I can't imagine the physical and mental suffering could be any worse than ESHAP. So it's just one more treatment to get through. I'll miss being home. I'll miss my wife and my little dog and the orange cat. I'll miss the Internet and the ability to send and receive email. But I'll survive.

How Ironic

I was supposed to meet with my doctor today to work out the timing of my second stem cell transplant, but her office called this morning and pushed the appointment back till Thursday. Turns out that my doctor got sick!

Here I am with the compromised immune system, and she's the one that got sick. Irony. Har!

It's just as well, really, because I haven't felt very good today myself. I've been cold since I woke up this morning and even a brief trip to the grocery store wore me down to a nub, but every time I stick the thermometer under my tongue it says the same thing, 97.5 degrees.

Perhaps I just have the blahs. Or maybe I need another V-8. I used to hate V-8 juice when I was a kid. The list of things I hated went something like this:

1. Adolf Hitler
2. Brussels Sprouts
3. Falling off my bicycle
4. V-8 juice

But these days I like it so much I've been known to drink it until I get physically ill. And I also love Brussels sprouts. But I still hate Hitler and falling off my bike, and I don't anticipate those things changing.

Stuffed

I hope everyone had a pleasant Christmas. Mine was. It was somewhat more low-key than usual, but it was still nice. I just finished Christmas dinner (turkey, stuffing, candied yams and all that manner of thing) and one this is obvious: I can't eat nearly as much as I used to. I read somewhere that it's actually a myth that the stomach shrinks over time if you reduce how much you eat. I've also read that it really does shrink.

I don't know. I don't have any way of measuring the capacity of my stomach except to count how many plates of food I can consume in the average Christmas dinner. It's gone down from about two and a half to about a half. Did my gut shrink? Is this some odd byproduct of chemo or cancer? Don't know.

I love the procedure of eating, and the Christmas dinner was exceptionally tasty. Who among us is not driven half-mad with hunger during the hours that it takes a turkey to roast? But somehow I just can't pack the food in like in the old days. It's a healthy change, I'm sure - forcing my innards to accept fourteen pounds of turkey and potatoes cannot possibly be good for a person. But I love candied yams so much I'm tempted to pack a few chunks into my cheeks so I can experience the flavor without actually having to eat anything.

Still, there's a kind of dark shadow hanging over Christmas. Monday I go to the hospital so we can schedule my second transplant. I've developed a sort of loose dread of the second transplant. I don't really want to spend two or three weeks in the hospital, and who could really look forward to seven days of high-dose chemotherapy? I don't really worry that anything will go wrong and I'll die, though there is a small chance of that happening. Nor do I really worry that my cancer will come back and that it will all have been for nothing.

Mostly I'm just sick of chemo. Chemo has been the dominant fact of my life for the last year and I'm growing weary of the nausea, fatigue, diarrhea and general sickness. I know it's all necessary if I expect to outlive my cancer, but I still dread it. I try to distract myself with movies, models and other hoohah, but it seems that no matter how hard I try, I end up gazing slack-jawed at the wall and dreading chemo. I've known people who actually ended up refusing chemo, preferring to die of cancer than live with the sickness. I'm not at that point, and I don't ever expect to reach that point - but after a year of chemo, I've gained at at least a glimmer of understanding of how one can reach such an extremis.

I expect, barring any complications, that I'll go into the hospital on the 30th to start the scorched-earth chemo. That's less than a week away! I have no idea what to take, or how I'll keep myself occupied. I just hope that my transplant goes well, my stem cells implant quickly, and I get out of the hospital as quickly as humanly possible.

When this is all over I'd like to go to Egypt and take a cruise up the Nile. Who's in?

Merry Christmas

It looks like I'll get to spend Christmas at home this year, and in halfway decent health to boot. That's nice, for several reasons. The most obvious one is that I'm still here - last year at this time, my lymphoma was so advanced and I was in such poor general health the odds of making it to this Christmas weren't so good. Then there's the fact that I very nearly had to spend this Christmas in the hospital undergoing the second stem cell transplant, but it appears that the timing worked out in my favor. And third, even though I was home for Christmas last year, I was in terrible shape - I had a bone marrow biopsy on December 24th, to cite just one thing.

The point is that this year I'll be home for Christmas, and I feel pretty good. I could ask for little more than that.

It worked

My new Hickman line worked - they were able to successfully draw blood out of all three of the lines, clearing away the last technical hurdle before the Second Transplant begins. I don't think it's going to be happening before Christmas though. They've only got four more days left to schedule the thing, and I just can't see it happening that fast.

My feelings are mixed. I'm glad to be home and relatively healthy (if somewhat weak) for Christmas. But on the other hand, the sooner the Second Transplant starts, the sooner it's over. I'd give up Christmas in return for a reasonable assurance that my lymphoma is going to be destroyed.

I'm starting to miss things. I'm starting to miss going out to dinner. I'm starting to miss going to lunch with the guys from work. I'm starting to miss lettuce and salad and spinach. I'm starting to miss going places like Harbor Freight or the hobby shop or the bookstore just for the hell of it. I think I'd just as soon have the second transplant now and get it out of the way to minimize how much longer I'll miss such things.

But the second transplant is going to be ugly. I just have that feeling. And I sometimes wonder just how much more I can cope with.

Catching Up

It's been a while since I wrote anything. As Inigo Montoya might say, "Let me 'splain. No, there is too much. Let me sum up."

I'm pretty well recovered from my first stem cell transplant. My blood cell counts are pretty much normal again, my blood chemistry is pretty much normal again, and I'm largely over the aftereffects of the massive dose of chemotherapy that killed my bone marrow in the first place. So what have I learned? First, I've never experienced any kind of fatigue that comes close to the fatigue you feel when your white blood cell count drops to zero. It's amazing. You can't do anything but sleep, and even sleeping wears you out. Even things as mundane as undressing and taking a shower have to be done in stages. You get undressed. You lie down for a while and rest. You take your shower. You lie down for a while and rest. You get dressed. You lie down and, spent, sleep for two hours.

It didn't help that I picked up an infection of clostridium dificile somewhere along the line, a rather unpleasant intestinal bug that requires special antibiotics to kill. The resulting diarrhea was profuse, and though I managed to drink enough fluid to stay ahead of the fluid loss, I lost so much potassium I verged into the "criticial deficiency" category - I think at its lowest, my potassium was 2.7, which is low enough that the doctors were starting to worry about cardiac problems.

The obvious solution? Hook a bag of potassium up to my central line and replenish, stat. As soon as the potassium started to go in I developed a most spectacular pain in the right side of my chest. It was as bad, and perhaps even worse, than heart attack pain. They thought I was having a heart attack; they wheeled in the portable EKG and ran some strips, and were puzzled when my EKG proved to be normal. But as soon as they stopped the drip, the pain went away. So that night I went home and tried to replace all my lost potassium by choking down potassium tablets the size of modest rodents, and the next day they tried to give me more IV potassium, this time through my old chemo port. Same result - devastating chest pain, and another night spent trying to choke down potassium tablets.

It turns out that both my central line and chemo port had failed - both had developed kinks that rendered them useless and triggered intense pain when the infusion pumps attempted to force potassium solution through them. They gave me potassium the old-fashioned way (that is, highly diluted with saline and mixed with lidocaine and infused through a vein in my arm) and eventually my potassium rose from "critical" to merely "low".

So what's the next step? I went back into the Special Procedures unit and had both of the failed lines removed and a new Hickman line installed in the right side of my chest. That was yesterday, and I still feel like I've been kicked in both sides of my chest by a large man wearing pointy-toed shoes.

But that brings us pretty much up to the present. My white blood cell count collapsed and came back up. My potassium level collapsed and came back up. My clostridium dificile infection came and (mostly) went. My old lines were ripped out and a new one installed. And as I write this, I don't feel too bad. My chest and neck are still extremely sore, and I don't have enough stamina to walk from the hospital entrance to the bone marrow transplant unit (lots of wheelchair rides for me lately). But I don't feel too bad, all things considered.

It certainly could have turned out a lot worse.

That Didn't Take Long

Last Wednesday I went into the hospital because my central venous line had stopped working. They concluded it had moved out of position and replaced it. Now today we discovered that my new central venous line has also stopped working! We don't know why yet, but I'd say it's a reasonable bet that it has shifted out of position again. There must be something fluky about my anatomy on my left side that just doesn't agree with central venous lines.

So what to do? Replace it again? Nah. They seem satisfied that they can do what they need to do using conventional IV access and my existing chemo port, though I do have to wonder why, if the port is adequate, we didn't just pull out the central venous line altogether last Wednesday and have done with it. They (meaning the bone marrow transplant unit) like the central venous line because you can access it without poking a hole in my skin. With conventional IV access or chemo port access, a needle must be pushed through my skin - the BMT unit regard this as an inferior approach from an infection suppression point of view. But I guess as a last resort, it'll do.

Besides, I don't mind. I'm all bruised up from having the new central venous line installed, but it makes me look tough.

My blood test results today were extremely positive. My white cell, red cell and platelet counts were really quite good, and despite all the vomiting my overall blood chemistry is still normal. Moreover, they hit me up with IV Aloxi and dexamethasone today because I started to get really sick right there in the BMT unit, and right now I feel right as rain. No nausea, no particular pain from my CVL installation, and immense relief that my stem cells seem to be finding their ways to my bone marrow and getting with the program.

I'll take that over a kick in the butt with a copper-toed boot any day.

First Flush

Do you ever take your car in to get the brakes fixed and find yourself testing the brakes gingerly the first few times you stop? I tend to fix the brakes on my cars myself - I apparently can't get enough of all that black dust, occasional hammering and random swearing. But still, even I test my brakes gingerly the first few times I stop afterwards. I don't know what I expect. Is the wheel going to fall off? Probably not. Is some vital brake component going to fly out? Unlikely. Will the car be gripped by that "uncontrollable acceleration" thing that was alleged to haunt Audis back in the 1980s? It would be fun, but it isn't likely.

I flushed my new central line for the first time tonight, and I confess I flushed it gingerly. I don't know what I expected to happen, but when you're pumping stuff straight into your heart, a gingerly approach seems justified. I am pleased to report that nothing went wrong. I'm even developing a dull headache, another sign of normal operations.

They say the fastest way to a man's heart is through his stomach. Well, let's time it. I just flushed my port, and I'm also getting ready to eat a small breakfast burrito. Let's see which one reaches my heart first.

Transplantitis

I had my first stem cell transplant Tuesday. Monday I was given the dose of Melphalan that kills the bone marrow (and, hopefully, the cancer) and on Tuesday I got two bags of my old stem cells back. It was... It seems that everything I write about is an unpleasant or uncomfortable experience, and I guess it shouldn't surprise anyone that the stem cell transplant was uncomfortable either. But I must sound like a broken record.

They thaw the cells but they still go in very cold, more of an icy slush than anything else. You're probably familiar with the idea of brain-freeze, the discomfort you get in your head when you eat ice cream too fast. Imagine the same thing happening to your heart and lungs. The icy fluid goes into your heart, which then pumps it straight on into your lungs. For the eleven minutes it took for the stem cells to be injected, I felt like I was having a heart attack and that my lungs had stopped working altogether. It's uncomfortable, and it's also terrifying; for a while I was pretty sure I dying.

Fortunately the discomfort doesn't last long and within a few minutes I was back to more or less normal. But boy was it an intense eleven minutes. The DMSO also gave me garlic breath. I myself couldn't smell it, but everyone around me kept saying "Wow, that DMSO really does smell!" Great. I have cancer, I've been chemoed, and now I'm physically repulsive too! Or maybe I always was and the DMSO just sealed the deal.

In the wake of the transplant, they discovered that my central line had stopped working, so they brought me back into the hospital Wednesday on a semi-emergency basis to see what had gone wrong. They shot one x-ray and said "Egads! It's hosed!" Somehow the central line had recoiled and gotten seriously out of position, probably during the frantic coughing I was doing during the actual stem cell transplant (that's my theory, not theirs; they didn't offer a theory as to why the thing would have moved).

So I had to have a new central line installed. They ran a wire up the old one, then pulled the old one out and snaked the new one in on the wire. It involved a great deal of pushing, jerking, yanking and general hubbub - I felt like the recipient of some strange and extremely violent Scandinavian massage technique. I couldn't see anything, however. They covered me completely with a sheet of light blue paper, and when they wanted to talk to me, they had to lift up a flap by my right shoulder, like a cook lifting the foil on a turkey to see how it's doing. The only part of the doctor I ever saw was a pair of eyes peering in at me under the flap.

So today my shoulder and neck are pretty sore. The chemo itself isn't as bad as ESHAP, at least thus far, but I've pretty much lost the ability to keep any kind of solid food in my stomach. I can still drink, though; that's an improvement over ESHAP.