Sunday, May 31, 2009

Emperor Palpatine or the Virgin Mary?

Andre is still in the hospital. He is still in respiratory isolation which means he's not even allowed to roam the halls of the cancer ward. He's feeling better everyday, and he's even got his sense of humor back. Two nights ago, his head was feeling cold but since we didn't have a hat or a cap here in the hospital, he made do with the hospital blankie. I just can't help not taking this snapshot (forgive the double-negative).

Saturday, May 23, 2009

Crazy monkey

I absolutely love this thing. It's part of the birthday gift package for Andre from two of our lovely friends.


Andre video

Friday, May 22, 2009

Happy Birthday!!!

Today, May 22nd, is Andre's birthday. He is still in the hospital but is getting better each day.

To ALL his readers: please write him a short note in the the comments section. I think it will cheer him up hearing from ALL of you.

Many thanks,

Tuesday, May 19, 2009

How are you?

In earth terms, it's been a long time since I gave any of you a real update on my physical condition, mental state, position in the universe.

I'm alive. I may (or may not) still have cancer, but cancer is always that way.

What recent tests have proved is that I definately have is Chronic Graft v Host Disease. The donor cells are trying to kill me and they're powerful little buggers. The Andre cells are trying to kill the cells that are saving me, and everything else in the world it trying to turn me into worm food.

Plot, counterplot, triple-cross means there's no rest for the weary, and I mean this in the most literal sense possible.

I'm exhausted and sliding backward. Ed is exhausted and frustrated watching me slide backward. This is SO HARD on him. He never deserved any of it. I think some of what Ed's been subjected to is probably the worst part of the entire cancer process.

All this past winter, I've motivated myself daily by thinking of trips, activities, bright sunshine, and Vancouver as our new home. Ed and I have had goals with positive outcomes and kettles full of smiles at both ends of our metaphorical rainbow. Now, as I'm about to turn 54, I'm too sick to deal with the rain that's needed for the spectacle.

In some ways, I think we're both technically depressed. We certainly have a problem with morale, but neither of us is giving up the fight.

So the diagnosis is: Chronic GVHD, exhaustion, possible depression. And all that comes with it.

Monday, May 11, 2009

Sunday in the hospital with Andre

We are back in the hospital. Repeat cycle. We're tired. If any of you want to visit, he's in 8NE of the UW Hospital. Call or email me first to make sure he's awake enough to have company. He sleeps all day.


Friday, May 08, 2009

It's alive!

Sorry to all of you who get RSS feeds. You're gonna get at least two of these.

I've lost my ever-lovin' mind. The drugs have been brutal. The changes have been horrible. The 4 people I've become have been unkind to Ed.

I slept in my own bed last night and spent about 6 hours back at the SCCA today being tested, probed and poked. They started photopheresis today and they've decided they wanna do it twice a week for the next 6 weeks. That works out to about 8 hours a week in addition to my regular duties there.

I'm currently at 61 doses per day (pills, cremes, proceses).

I weigh 141#. I haven't weighed 141# since before I entered HS.

Now I'm gonna take a nap.

Wednesday, May 06, 2009

Tenth night

Ed here, writing from Vancouver. I decided to stay in Canada because it's probably not safe for me to be on the road. I've been driving back-and-forth from Vancouver to Seattle. That's 140 mi each way. Since Andre's been hospitalized, I've put 1120 mi in my car. That's the equivalent driving distance from Seattle, WA to Los Angeles, CA (or from New York City to Kansas City).

It’s Andre’s 10th night in the hospital. He’s slowly getting better. This morning, the doctor said that he can leave the hospital on Friday at the earliest. They really want to see him start eating more which is more difficult than it sounds. The TPN he's hooked to have this effect of taking away one’s appetite. Additionally, his GI trouble is not fun and he thinks eating less will correspondingly decrease the pain he feels every time he goes to the loo.

Last night, Andre requested a soft taco from “the Bell”. It was the nurse who pointed out to us that it was an appropriate choice since it was Cinco de Mayo (I know…it’s not really Mexican food). Had I remembered, I would have snuck in some ‘ritas too.

Sunday, May 03, 2009

Still here.

It’s Ed again. Andre is asleep. He’s on his 7th night here in the UW hospital. Visitors are welcome to break the ennui of a confined life.

He was admitted to the hospital on Monday because of rashes/hives all over his body, conjunctivitis, and his lips that were cracked and bleeding so badly that he’s unable to eat or drink. The next day, the doctors did two more skin biopsies (for a total of 3 biopsies in 5 days). They also put him on 140 mg/day of prednisone which is twice the highest dose he’s ever been on. It did a lot of wonders for him as he was chipper by Tuesday afternoon, his lips had stopped bleeding and was able to start eating again, and the angry rashes were less irate. He even managed to be wonderful company to the two lovely ladies who visited him that night. When I left him on Wednesday night to go back to Vancouver to work and do my taxes, he was still fine but less chirpy. The steroid magic went away on Thursday. They did a 4th biopsy on Friday. This time, it was of his mouth. They also started feeding him nutrients through his central line (this process is called Total Parenteral Nutrition, or TPN for short) because he’s unable to eat enough to maintain his body weight. He sleeps most of the day. He’s unable to walk the halls of the hospital floor because of the inflamed skin around his groin area.

He’s been seen by oncologists, ophthalmologists, infectious disease specialists, a radiologist, and by a dermatologist. They’ve done biopsies, swabs, blood work, changed his medications (such as increasing the doses of the immunosuppressant prednisone and Tacrolimus, adding several eye meds, etc.), and a slew of other procedures. Today, they confirmed that he has chronic GVHD (graft-versus-host disease) based on the result of the mouth biopsy. He’s back down to 70 mg/day of prednisone. They’re considering adding back the other immunosuppressant--Myfortic--that he was weaned off two months ago. His rashes needs to calm down some more, and he should be able to eat on his own again before they can discharge him as an out-patient back to the care of the SCCA’s Long-Term Follow-Up Unit (LTFU). The LTFU will take the reins again because his regular SCCA oncologist does not want to deal with GVHD. This is a good thing because the LTFU is better equipped to handle them anyway.

I go back to Canada first thing tomorrow morning, but will drive back at the end of the work day. Thank God for public radio and for books-on-tape.