Tuesday, January 27, 2009

The waiting game begins

I woke up this morning feeling great, in fact I'm feeling better than I've felt all week. I complained again to my doctor that it makes me a little nervous that I'm feeling so well, since I keep thinking it must mean that the chemotherapy didn't hit me very hard. She reassured me that everything is going great, and that I should just enjoy the fact that I'm feeling well. She pointed out that my counts are still dropping, and that my neutrophil count is at 0.07, which is very low indeed, which means the chemotherapy is definitely working. So I guess I'll just enjoy myself and not worry so much :) The other side-effect I'm noticing from the counts getting lower is that my hematocrit is decreasing, which measures the percentage of red blood cells to total blood volume. When hematocrit goes down, there aren't as many red blood cells to carry oxygen, so your heart beats faster and it's easier to get fatigued. I'm starting to feel the effects of this today.

Today they took down the warning signs in my room which warned nurses to gown up and use eye protection when emptying my urinals, since there was still a toxic amount of chemotherapy being released from my body. One of the nurses said that the amount of chemotherapy in my urine was more than some breast cancer patients were subjected to. Crazy. So I guess my body is clear of chemotherapy toxins now. Except that the sign will go up again tomorrow since I'll be getting a dose of methotrexate tonight, and another 3 doses over the next 10 days. Methotrexate is another form of chemotherapy. The purpose of giving it now is actually to slow down the growth of the new stem cells. Strange, right? Well, with mismatched stem cells, meaning, the stem cells came from someone else and not me, there is a risk that graft-versus-host may come on suddenly once the stem cells start growing. Slowing down this growth helps the little stem cells set up shop and get more acclimated to their new environment so that they don't find it hostile right away. Even with a perfect 10/10 match (I'm only a 9/10 match), there is still a risk of GVHD, since there are always some minor differences between the blood DNA.

The other downside to methotrexate is that it can also cause mucositis, so I'm still doing everything I can to prevent it. Over half of all cancer patients develop oral mucositis so badly that it requires their chemotherapy doseage to be reduced, impacting the patient's prognosis. The main problem with mucositis is that it's so painful that it can become impossible to eat or even drink water, which then causes infections and weight loss, which then causes further problems. Food also tastes terrible since the taste buds on your tongue are essentially wiped out, so trying to prevent mucositis is extremely worthwhile to one's well-being. For good measure, I just now rinsed my mouth again with the special mouth rinse.

The snot guy came today to measure my lung capacity and collect some snot. This is another clinical trial I signed up for that not only helps the researchers, but helps me as well, since the snot they collect is analyzed for infectious diseases and in some cases have warned doctors of a virus a patient has before the patient exhibits any symptoms. All I have to do is exhale into a little device, then sit there as the tech guy squirts a saline solution into my nose and collects the results. The little device measures the amount of air you exhale, and I had the best results on the floor today - 5 liters of air. He said they've never had anyone in the hospital do 6 liters, so it sounds like I have a challenge ahead of me :)

Johanna's sister, Val, flew up from Los Angeles today and will be in town for a week, which is cool. She's a real trooper for leaving sunny California to visit us up here, since the weather in Seattle right now is terrible! This afternoon Val came by and hung out with me at the hospital, and we walked a mile around the hospital floor and caught up on stuff.

Now that the transplant day has passed, there's not much to do except wait for the new cells to engraft, keep from getting mucositis, and keeping clean and preventing infections. It will take 2 to 3 weeks for the stem cells to engraft, and there is still about a 30% risk that they won't, which would mean that my current cells grow back enough and end up killing off the new stem cells. The bummer part is that we won't know whether this has happened until Day 28, the day we do another bone marrow biopsy and tests are run to see exactly what percentage of donor cells versus host cells are still in the body. So this is why it's just a waiting game, and for the next 28 days we just have to cross our fingers and hope the new little stem cells start doing their job.

Here's a little chart showing what to expect through Day 100 and beyond:


Simon said...

The snot guy? That sounds like someone we all need in our lives. "Man, I have a major booger jammed up there. I wonder if my snot guy can fit me in this afternoon?"

Glad you're feeling good - just keep it up for the next 100 (10000?) days, and all will be well.

- S

George said...

Ok kewl. I can't believe you feel so great. It must be our love force field protecting you. ;P

Beth said...

So this Transplant+1 with 27 to go for good news. Upside man, focus on the upside.

You gotta be better 'cause we are counting on it AND 'cause
Leon looks like ....well, he doesn't look like Leon with his longish ponytail. He's really in there pulling for you also.
Jeff and Beth

Brenda Elze said...

Congrats, Steve, all my best positive energy to you!!!

Farookh said...

i always learn something about the amazing human body from your blog posts. thanks!

hope you have a headache/nausea free night tonight.