Bad Patient

I've gone over a year and I'm tired of being a good patient --- so from now on out, I'm going to be bitchy and lash out at people ... but I don't care.

I won't see the sun literally or figuratively until the end of January.

Last week was not a good week. I started out with a 105 fever, a new record for me. I slept for 24 hours. I got the chills. Then, I got a weird syndrome like Parkinson's. I've had to use a walker for about a week and a half. I've got at least 10 more physical therapy sessions to go. My doctors discovered an inoperable brain lession that's forced me into radiation. I've thrown up everyday I've had radiation (which, at this point is no big deal --- throwing up is another part of life ---- I wipe myself off and move on).

When I go without posting, then something is really wrong. Hopefully, I'll have a guest blogger later this week.

Night Schedule at Nebraska Hospital

9:45 - Lights out. Yeah, being a chemo patient can be pretty tiring.

11:45 - Jack, the night nurse, came in to give me Zofran, the anti-nausea medication. I asked for a warning on when he'd be waking me next. He told me that he'd see me again at 2:45 though he predicted it would be closer to 2 as I would be awake and should call him so that he wouldn't have to wake me again later.

2:00 am - I drink at least two 30 oz cups of water every day to help flush out the toxins. Unfortunately, that means I'm up in the middle of the night getting rid of some of it. As Jack predicted, I was awake before he woke me. So, as he suggested, I buzzed him so that he could take care of his business after I took care of mine --- he had to draw blood so that my lab work would be ready before the doctor made his rounds in the morning.

5:00 am - I was half-asleep when the tech came in to put the cuff around my left arm to measure my blood pressure and take my temp.

8:30 am - Up and ready for another day. It was a fairly easy night all things considered. They seem to be a little more considerate of my sleeping schedule here than they did at Baylor last Spring. There it was like trying to sleep in a Greyhound bus station. But each night is different so who knows what tonight will be like ...

Room 7437

It's grey and dreary outside. The temperature has dropped to the low 40's and it's supposed to snow. Yesterday, of course, was bright, sunny and unusually warm for this time of year. Susan, Dr Vose's chemo coordinator, met with Mom, Dad and I yesterday morning to go over the protocol I'll be on, the side-effects I can expect (mouth sores are popular this time) and gave me a general schedule for the next six weeks. Hyper-CVAD is an intensive chemotherapy divided into two parts. I'm doing part B, the more intense course first, to give the tumor a bigger initial shock then after a two week break I'll do part A which uses some of the same chemo drugs in CHOP-R, the regime I was on this summer. Right now I'm on Mesna, the second drug so far, for the next twenty-two hours.

7437 is the typical beige hospital room with the requisite faux Thomas Kincaid painting and narrow view of the outside world. The room overlooks the hospital's scenic heating and cooling plant and the adjoining neighborhood of 1940s beige (okay, one is turquoise) wood-frame homes. All who enter here have to wear a mask, gloves and gown (the paper kind!) unless they've had their flu shots. Mom and Dad just got vaccinated yesterday but have still had to wear masks (I'll post photos later) since there is still the possibility of making me sick. Yes, the world does revolve around me. Mom is happy to have a roll-away bed and not a sleeper-"chair" like she had at Baylor. The Hospital also has room service! So, instead of a scheduled meal service I get to choose whatever I want from a menu and they'll bring it to me whenever I want. And, if the Hospital kitchen doesn't have what I want then they will pick up something for me to eat at one of the three hospital restaurants . I tell ya --- you have a lot of pull when you have cancer!

Dr Bociek, the oncologist on-call, stopped by during rounds this morning (interrupting The View) with an entourage of about fifty people --- two PAs, a pyschologist, a social worker, my nurse, a visiting doctor from Taiwan, several students and a nutritionist. We chatted for a few minutes about how I was feeling, if I was having a reaction to any of the drugs and he checked my breathing and heart rate. He seems like a good doctor and I like him but it was sort of odd having such a personal conversation and being examined in front of an audience (though, as I've said before, I've lost most all sense of modesty so it wasn't embarrassing it was just ... odd) though if we had added a fight you would've had the Jerry
Springer Show. After the room cleared out, the psychologist stayed and hung out for a few minutes and we talked about my reaction to the growing mass. Then the tech came back in to check my vitals. Mom and Dad went to lunch. Mindi changed my chemo drugs ... it's been an exciting day.

The Light at the End of the Tunnel ...

... keeps getting dimmer. The tumor has grown. I start salvage chemo for lymphoma tomorrow (I'm guessing this is the same protocal that Holmes recommended). It's two cycles - six days of chemo then two weeks "off". I have to get the tumor to shrink more than 50% to go onto stem-cell. Looks like I won't be home until February (if all goes well).

Sorry this is so impersonal, just not up for much talking right now.

A Date with Omaha

Gotta keep up, things move fast around here!

One day the plan is to stay in Dallas for a couple more weeks for more chemo. The next day the plan is to be in Omaha on Tuesday for a bone marrow biopsy! I can't wait ...