Tuesday, March 22, 2011

it's hard to write on narcotics

so this is going to be really short. longer post about my latest adventure at the hospital later.

thursday morning, white cells practically non-existent and platelets plunged as well. thursday night, spiked a fever. 102. made my way to ER as is standard procedure.

blood cultures, antibiotics of many stripes, chest x-ray, viral swab, etc., etc., etc. somewhere in there I start to realize my mouth is starting to hurt like a bitch. ask for advil. platelets make docs say no; pain gets worse; I get narcotics instead.

cycle through chills and fever until Saturday. mouth pain gets progressively worse. I have oral mucositis, which is a deceptively friendly sounding term for mouth sores and inflammation turning your mouth into an abyss of pain. Eating got progressively harder; mostly liquid diet right now until chewing becomes easier. 

long story short, nasty little episode with pain team, eventually get a PCA (look it up please), pain is much more controlled.

counts still not going anywhere. had to give me blood today because hemoglobin dropped again and I'm having anomalous cardiac symptoms (aka weird heartbeat issues but my heart has been worked up twice in a week and every cardiologist ever says I'm fine) which might just be because anemia like the last time with the shortness of breath. which I never got to blogging about since I was readmitted two days later. fml.

did some art therapy! watercolors! watched NCAA and movies.

this probably sounds miserable and cranky and etc but I've been fighting drug induced sleep this whole time to make these sentences. pain is better controlled and I think my mouth improved but more updates tomorrow. letting drugs win now love you all.

Monday, March 7, 2011

Brought to you by hospital wifi...

Chemo's on for this week. I already knew my counts were up, since I had to make a quick Saturday trip to the ER to get an infection in my surgical wound checked out. Higher counts and a lack of fever or systemic infection saved me from spending the night at the hospital, but I still had to spend four hours letting surgery prod me before they decided I was safe to go home on antibiotics. I suspect surgeons sometimes forget that their conscious patients are going to feel and react to pain.

Anyhow, counts are up and surgery gave the go-ahead, so I will be receiving chemo this weekend with etoposide and cytoxan, five days. Unfortunately, this round can't be received at home, so I'll be enjoying hours in day hospital every day this week. And by enjoying I mean trying not to cry and/or break things. I almost did the former after sitting in the waiting room for over an hour.

Now I'm actually in day hospital. I ordered froot loops for lunch, because I saw a little girl a third my age munching on a bag and it seemed like a great idea. Oooh and there's that lovely wave of crappiness I get during every cytoxan infusion.

The doctor just dropped by and informed me the main tumor has decreased in size by 50%. Turns out the reason she did an ultrasound so early was to document a response so she can move forward with plans for eventual stem cell harvest and transplant. 

Oh look time for more science. What is a stem cell transplant?  A stem cell transplant is a transplant of bone marrow given after either intensive chemotherapy or total body irradiation. The logic of stem cell transplant seems frankly insane outside of the context of oncology. First, the doctors need to harvest bone marrow by using to drugs to amp up the production of the patient's or the donor's white blood cells (which are produced in the marrow) and then collecting those cells from the body. Then, they more or less attempt to destroy the patient's existing bone marrow with high dose chemotherapy, total body irradiation, or both. Obviously, this brings the patient close to a state one might call death. Doctors then "rescue" the patient by transplanting the previously collected marrow stem cells.

Your next question might be, why the hell would they ever do that? Well, some cancers infect the bone marrow, so the goal of a transplant is to replace cancerous with healthy marrow. These patients have to receive donated marrow. In cases like mine, the goal is to give the really aggressive chemo and/or radiation without subsequently killing the patient. My doctor went fishing in the records for other cases like mine and thinks evidence warrants this kind of treatment for me.

So the current and as always subject to change plan is to get a CT in around 2 1/2 weeks and if that checks out move forward with surgery to remove the rest of the tumor and then harvest my stem cells while I'm recovering from surgery. I know, sounds so fun you want to sign up, too!

An aside before I give up writing and succumb to a nap: all these little sick kids need to stop breaking my heart. The little guy next to me was sobbing in terror when they were placing his IV and then when asked about lunch whispers "strawberry jell-o" in his thick accent. Too much. Just too much.

Wednesday, March 2, 2011

Buzz Cut

Yes, that would be the top of my head. I really did not want to let go of my hair, but it was clearly starting to fall out so I bit the bullet and went for the buzz.

At sixteen, I was completely blind-sided by the hair loss. They told me 3 weeks, and it took a little less than a week. I also assumed the process would occur fairly slowly. Instead, my hair came out in clumps and even touching it would cause it to fall into my hands. It was the single most traumatic experience to come out of six months of cancer treatment.

(90s throwback: ever see The Craft? When one of the teen witches makes that girl's hair fall out? That's basically what happened. Yeah)

Taking control over my hair loss proved significantly less traumatic. But I can't lie and act as if this doesn't bother me.

It does. It makes me want to scream and cry and throw things across the room. Cancer has already stolen so much from me, and it seems patently and unnecessarily unfair that it steal my hair as well. Losing my hair robs me of confidence and a sense of femininity, as well as that ever so simple but incredibly important pleasure of feeling pretty.

With hair still attached, I could look to the rest of the world as if nothing was wrong. My scars are all hidden under clothing, and enough makeup can hide the pallor of my skin when I'm not feeling so well. But with my hair gone, I look like a cancer patient. And I really don't care that that's what I am. It's not something I want to own. I sure as hell don't want anyone, whether I know them or not, looking at me and thinking, "Oh, she must have cancer." It's not about being judged; it's about knowing all too well that when that happens all people can see or think of is cancer.

It's funny, because I started this post last week when I was feeling fairly perky enough to go out and about and thinking I was ready to get back to work. Losing my hair was my biggest frustration. Then, over the weekend, I was surprised to find myself taking a turn for the worse. Three migraines in three days, the pain at my incision site felt worse, I couldn't sleep, and I generally felt like curling up in a ball and being miserable. It was a relief to get the call on Monday after my vincristine dose and blood draw that my white blood cell count was extremely low. Suddenly everything made a lot more sense.

Since every person I've told this to has subsequently asked "What does that mean?" and "What can they do about that?" I'll try to answer those questions. White blood cells (which actually consistent of a few different cell types) are often very susceptible to chemo, and in leukemia, that's kind of the point, where in other cancers it's more of a nasty side effect. White blood cells do pretty much everything for your immune system, so not having very many of them means that I am susceptible to general feelings of crappiness, slowed healing, and a whole bunch of other fun things, the most serious of which is being one giant walking infection risk.

This leads to paranoid exchanges like the following with my father:
Me: Hey dad, I got a paper cut, do you think you could grab me a band-aid?
Dad: What? How did you do that??
Me: ........
Dad: Oh. Right.

As for what doctors can do about my low counts, right now, just wait for them to recover on their own. My monocyte (basically baby white blood cells) level is high, so they seem to be trying. If they don't recover next Monday, we'll have to delay chemo by a week. Then right after my next chemo they'll give me a drug which drives the division and maturation of white blood cells to help my body out. For now, I'll just have to wait it out -- and make everyone who comes to my house wear face masks for kicks.