Tuesday, May 6, 2008

Day +342

As I write this, I would like everyone to be forewarned that
a) I'm eating left-overs because the baby stem-cells get very angry when they haven't been fed.
b) I feel like I've been shot in the left buttock, a la Forrest Gump.
c) My arms ache like I've been involved in the most vicious game of "Dead arm".

Yesterday was a very long and trying day and I'm just happy to be back in BR in one relatively battered piece. The day started at 4am because we didn't want to stay in a hotel and Baton Rouge is roughly 5 hours from Houston. We were late to my first appointment due to obscene amounts of traffic around the medical center. It didn't really matter since the diagnostic lab was standing room only and the mob waiting to be seen stretched out to the reading room down the hall from the lab. Those of you who are familiar with MDA will know that that's a lot of sick people waiting to get blood drawn. My appointments were spaced at 30 minute intervals, so Chris started calling clinics to let them know that we were in limbo.

My 9:30 appointment was in an area that we'd never been and the receptionist Chris was talking to asked that we come in without having my blood drawn. After securing directions we jogged over to the Cancer Prevention Building anxious to see what this new experience entailed. This place is all the way across the compound and it took us 15 minutes of power walking to get there. Cancer Prevention could have been anything as far as we were concerned and quite frankly, I was wondering what you could do to prevent a cancer that slips in silently and destroys one of the most fundamental parts of your mechanism.

The visit ended up being more of a meet and greet that my transplant doctor had arranged so that I would show up on the Cancer Prevention center's radar. I met with Dr. Blazek who I absolutely loved for her candor and total ease. I was really looking forward to working with her long-term, except she let us know that she was leaving to establish a private practice and yesterday would be my only meeting with her. She's going to specialize in internal medicine, so if I'm ever in need, I'll just go see her privately.

I was given a mini-physical in order to establish a base line reading and we talked about my diagnosis and treatment. Dr. Blazek was able to speak fluently on the subject of transplants since she's had experiences with the procedure in her personal life. We talked about my dad's multiple cancers and I learned that melanoma and leukemia are tied for new diagnoses. So kids, wear your sunblock and don't take anything for granted.

We had to hustle back to the diagnostic lab so that I could have blood drawn and I was able to get in and out in record time. We were about an hour behind on my schedule so we forged ahead and hoped for the best. I had a bone marrow biopsy which would explain the little quip about my left buttock. Tommy, who performed the procedure was a dream and managed to do everything on the first try. This is important in terms of how you'll feel over the next few days. Fewer attempts at punching through your hip equals fewer days coping with a sore bottom.

By this time I was starving since breakfast had occurred over 8 hours earlier and I was fretting over when I was going to get to eat something solid. Chris surprised me with the news that he'd gotten my next appointment rearranged so that we could get a quick bite. I feel terribly for the people sitting at nearby tables in the cafeteria because my table manners were atrocious and I fear that I was making feral animal sounds as I wolfed down my lunch.

I had a bone density scan which was absolutely painless and over so quickly that I was able to get back on track with my appointments. I found myself sitting in a hospital gown explaining all the new little skin ailments that have been plaguing me to my transplant PA. I have several new rashes on my upper arm and abdomen and a small circle of irritated skin on my left eyelid in addition to everything else. There are a few new fingers participating in Paronychea '08 and my nails still look like the surface of mars.

Since I have a habit of sitting on my hands when I'm wearing a hospital gown, I had to be sure that I resisted the compulsion this time around. You see, it makes my palms very red which is an indicator of GvHD of the skin. My transplant doctor always looks at me in askance when she gets to the part of the visit that involves examining my hands and I have to sheepishly tell her that my palms don't always look like a baboon's bottom and that I've been sitting on them like a fidgety child. As it turns out, the sides of my palms including pinkies are constantly red. I've never noticed this, but my amazing doctor has. After giving me a once over, she pronounced that I do indeed have a manifestation of low level chronic GvHD of the skin. This is a good thing so long as it stays in the minor category and doesn't start to occur in any other organ. Patients exhibiting signs of chronic GvH of the skin have been shown to have the least occurrence of relapse.

We asked a few difficult questions involving my situation and were met with a lack of studies and concrete evidence. It would seem that I now find myself in a nebulous stratosphere where studies are currently being done, and I'm being told that I'm cutting edge. Not on the cutting edge, but the embodiment of it. I have unresolved feelings about it. We gleaned that my chances of surviving past 5 years have climbed above 60 percent which is as good as it gets. Dr. Kebriaei has encouraged us to start making long term plans as far as life is concerned. I've hit one benchmark and the next is to survive two years.

I am still not allowed to eat sushi or rare beef. The sun is still not my friend and no one can answer the allergy question. As in, will they always be this bad? I can't take a shower until tomorrow afternoon because of the bone marrow biopsy, so I feel like a disgruntled fraggle with B.O. We learned that we should wait until I hit the 5 year mark before starting a family or adopting. I didn't' argue the fact that this would mean that I would be in the twilight of my thirties which presents a whole host of new issues. I'm sure I'll find a way around it, so it's a worry for another day.

As for my arms feeling like 8 year olds have been whaling on them, I got my first set of vaccinations. Five shots. Not five in one, but five individual shots in various locations of both upper arms. Vaccines cause a good bit of discomfort as they're being absorbed into your tissue. Just for the morbidly curious, here's a lift of what I got: Hepatitis B, Haemophilus Influenza B, Enhanced Inactive Polio, Tetanus and Diphtheria, Pneumococcal Polysaccharide. I'm scheduled for 4 new ones in three months time and then 6 more 9 months after that. Now I know why my friend's daughter Mia always looks so cross after a visit to the pediatrician.

I'm sure that I'm forgetting something, so I trust that Chris will post something when he gets home tonight. Pictures will probably be included. I'm off to make an indentation on the couch.


Tina said...

which fraggle?

I love hearing that long term plans are in the mix. That is great news!

pj said...

Did they at least give you some cool band-aids? Glad to hear you made it through the appointment marathon, Miss Cutting Edge!

Susan Carrier said...

What a day! It takes me days to recover if I have to crawl out of bed before 6:30 am.

I, too, am thrilled to hear those magic words about making long-range plans.

Anonymous said...

That's all so great except for the shots part. I just can't stay more than that.