No, I mean it literally made me dizzy.
half hour or so after googling BPDCN), nor have I spent any time worrying about potential side effects.
That includes today, but apparently something inside me notices when I read page after page after page of "risk of nausea," "liver damage," "infections that could be fatal." When I looked up from what was probably 15 or 20 minutes of reading, it was like someone had slapped me upside the head. I was, quite literally, dizzy.
But that's not what seems weird to me. What seems weird is how I got the papers.
I went in today for a dental cleaning, which is required before the transplant. It's part of being up to date on the dental. Afterward I dropped into the stem cell transplant unit (SCT) for a tuberculosis test. The nurse practitioner in charge of my case wanted me to get that test started early because it takes a couple days to check it. Doing it today allows her to look at it Thursday and, hopefully, mark that off as negative.
So I dropped in and asked where to go and what to do. A lady at the check-in desk of the SCT unit told me she'd take care of me. She scheduled a nurse to give me the test, and she handed me a packet. "I don't know what's in there," she says, "but if there's anything to sign, don't sign it. They'll want you to sign it in front of them."
"I see. So I need to bring this back with me on Thursday?" I ask.
"Yes," she tells me.
So I sit down to wait for the test, and, naturally, I open the packet.
"You have been referred to Vanderbilt ... Your case was presented to the transplant committee on 7/11/11 by ..."
Boring. I turned to page two.
"Hickman catheter (central line): Complications of placement: blah, blah ... Infection: 30% chance of getting infected, not life-threatening ...
Preparative regimen and side effects: Chances of dying from regimen related toxicities are 20-30%"
Whoa! I have to say, that among the side effects of treatments I'm receiving, I'm really not used to reading "chances of dying ... are 20-30%."
I thought, "Is there no advance warning about the packet itself?" It could say;
WARNING: This packet contains brutally honest health information of which you have not yet been apprised. Complications associated with opening and reading this packet without professional assistance include nausea, vomiting, and heart trauma. ... Oh, and dizziness.
A Little Summing Up
To be honest, though, I kind of liked having the risks summed up in one place.
The chances of dying from the preparatory regimen is 20% to 30%. Afterward, once the transplant is done, the risk of Graph-versus-Host Disease (GVHD) is 75% to 80%. Of the many who face GVHD, 80% will find it treatable. The other 20% will die.
The risk of dying from any of the other issues are pretty slim. So doing a little math, they're saying that currently my risk of dying from the treatment (the chemo, radiation, and transplant) are between 32% and 41%.
That's better than what I've heard.
In fact, Dr. Strickland told one of my friends in the hospital that his chances of surviving the transplant were 40%. I was there when he told him. He didn't flinch or hesitate. My friend told Dr. Strickland to be honest, and he was. No thinking about it, just "40%."
My friend's got some heart problems, so that may make it worse for him. I don't know.
I just know that right now, assuming I'm reading that paper right, they're telling people they have a 59% to 68% chance of surviving the stem cell transplant and the chemo and radiation needed to prepare for it.
Dizzying Side Effects
I had to go get my test, so I waited until I got home to read the rest of the packet.
It is remarkably thorough. It is also clearly set up to be given in a consultation setting. Nurse Works told me that we would have a 90 minute or more briefing on Thursday. I suspect it's to go through the packet.
|This is me getting ready for the previous picture|
I read it by myself anyway. Like I said, it's very thorough, and it goes through the irradiation process and each individual chemotherapy drug. It addresses GVHD, and it discusses the side effects of the immunosuppressive treatments for GVHD. It's 5 pages of potential problems, a truly "dizzying" list. These are just the ones listed as "common":
Oops, wait. Let me give you one that's a little frightening, but it's pretty cool. This whole process is amazing! They take stem cells from an umbilical cord and placenta and simply inject them in a vein in your arm. From there, nature takes over completely. Those stem cells see the serious lack of bone marrow and associated blood cells, so they plant themselves in your bones and go to work.
So the first potential side effect is frightening, but it's as astounding as the whole process is.
Your new immune system will have to learn to protect you from infections, much like that of a baby. Because you still have viruses and possibly other organisms in and on your body that you have picked up during your life, they may be able to become active again and make you ill.
They add, "Infections can become life threatening as a result of your body's decreased ability to control them."
Frightening, yes, but the whole idea is just amazing. (I think I said that already.) Here's one more interesting result of this amazing process: "You will need to repeat some of your childhood immunizations when your immune system has become capable of responding, probably a year or more after transplant."
A whole new immune system. Wow.
"Common" Side Effects
Okay, here's that list:
- Shortness of breath
- Thinning and loss of hair
- Loss of appetite
- Nerve pain in arms and legs
- Stomach pain
- Sores in the mouth or stomach
- Loss of desire to eat
- Skin becomes dark
- Poor coordination
- Poor judgment
- High blood pressure
- Excessive hair growth on the face and limbs
- Electrolyte imbalance
- High blood sugar
- Growth of too much body hair
- Kidney damage
- Skin rash
- Liver function abnormalities
- Dry eyes
- Dry mouth
- Dry, flaky skin
- Joint pain similar to arthritis
- Face appears fat and swollen
- Weak bones (osteoporosis)
- Mood swings
- Increased appetite
- Muscle weakness
Those are the ones listed under "Common"! They're separated out by the various treatments, and I avoided repeating nausea, vomiting, fever, weakness, high blood sugar, liver abnormalities and a couple others that are mentioned repeatedly.
Really, I'm not as worried as it might sound. In fact, I can't say I'm worried at all. On the other hand, I've always known there's two parts of our brain. There's the left-brained part that thinks logically, of which we're always conscious. However, because that sort of thinking is in our conscious, it can only handle so much information. Huge amounts of information, such as our general perception of life—and long lists like the one above—are processed in our more intuitive and less conscious right brain.
The intuitive part of our brain doesn't kick out words and sentences. It kicks out feelings, which is why we have those "gut feelings" and "hunches." It's also why those gut feelings and hunches are so often correct.
However, it's also why we are possessed by an eerie sort of fright when we're alone in a dimly lit house. That sort of feeling may have served us well as we crept through a thick jungle in twilight, but it's mostly useless in the average house in a civilized town or city.
It's that part of my brain that kicks out the dizzy feeling after reading through five pages of "common" side effects.
Right now, though, I feel just fine. Apparently the intuitive side of my brain has gotten settled with the idea that this is the route God has called me to. This is the way I'm supposed to go, so it will all work out good in the end. "Yeah, though I should walk through the valley of death" and all that.
A Little Advice
That combination of a logical, conscious side and an intuitive, feeling-oriented side is what makes us human. That's why it's silly to apologize for how you feel (or, if you're a Christian, to repent for something you merely felt). You have little control over how you feel.
Those feelings, though, are suggestions from your intuitive side about what to do. You're supposed to combine that with your more logical side and make a moral choice about what you're going to do.
On the other side, when your logical side is being checked by the feelings that rise up from your intuition, you should pay attention. Americans, and perhaps all westerners, are prone to ignoring their intuitive side. That's a route to unhappiness.