so long, ECRL

I was discharged from the hospital today, after demonstrating that I could keep food down by eating breakfast.  (Yesterday, I couldn't even keep water down!) Bill transferred me back to Rotary House, the hotel that's attached to the hospital by skybridge, and then left to fly home.  I'm here tonight and then when Shelly gets here tomorrow, we'll go together to the Modern B&B for the rest of our stay here in Houston.  I had a room service dinner and will probably retire after I'm done with this post.  Thanks to all of you who are emailing, FBing, and texting your support.  It's nice to be surrounded by the circle of life.

I saw Dr. Oates this a.m., the plastic surgeon.  He explained a little more about what happened yesterday and the game plan going forward. All of the diseased cells they found yesterday were in my extensor carpi radialis longus muscle, the ECRL.  This muscle allows me to raise my wrist, but there's another muscle that also does that job.  In fact sometimes he has taken this (or that other)muscle out to use elsewhere for a repair.  So, it seems like one that is relatively easy to sacrifice. Especially since I don't play racquet sports.

There are two reasons they didn't do the graft yesterday.  First, they wanted to wait for the final pathology report (10 days to two weeks) to make sure that, by taking the whole ECRL, they did in fact get a safe margin. They didn't want to do a graft, and then discover they had to go back, again.  Second, the tissue that's there still isn't completely healed from the radiation.  By using the synthetic material first, they will allow the site to heal so that a new graft is more likely to take. The synthetic, even left alone, would eventually provide the scaffolding for new skin to grow, even without a graft, but getting a graft will speed the process substantially.  However, it's still going to be at least six weeks in a cast (as he said, the same as a break would have been).  And there's some other near term fun, like the VAC machine that I'll have to wear when I get home 24/7 until the next surgery (apparently the size of a small purse).  I'll learn more about that and what the next several weeks entail when I see him Monday.

The right thing to do.

Bottom line: Surgery went fine. They did find more cancer so I lost one little muscle (Not sure of its name) so it was the right thing to do. Because of that, however, I did not get the new graft of my own skin and will have to have another operation after the first of the year. Instead, I have a synthetic graft. Meanwhile, I will probably get to go back to Colorado on Tuesday!

It was a short night with very little sleep for either me or Bill. It was nice to be in the hotel attached to the hospital though because we got up at 4:55 AM and were there for my 5:15 check in. It\'s quite a large place. I was in operating room 15 of 30.

According to Bill, they found several small "infiltrations" of cancer cells in the adjacent muscle tissue. The procedure in the O.R. is to send "frozen samples" to pathology for a quick assessment. They continue to cut until there is no evidence of remaining cancer cells, "A safe margin."  However, a full pathology report takes up to two weeks to be (more) certain that they got it all. This is why they did not complete the full graft today. Instead, a PriMatrix synthetic material is used as a scaffold to improve re-vascularization of the damaged tissue. After the pathology comes back, assuming that it's clear, I can get the same kind of graft I had last time. That's a partial skin graft taken from my upper thigh. That would happen after the first of the year. Or, if the pathology shows that there are more bad cells, they would remove more tissue at that time.

There  are two muscles on the top of my forearm. Both can be recruited for the same motion. He took out the smaller of the two. I'll have some PT/OT work to do but right now I'm in a cast.

Logistically, I may be released as soon as tomorrow but I'll have to stay in Houston until at least Monday. I'll see the plastic  surgeon who will change the dressing, and give me a splint and sling. We think, then, I'll be free to return to Colorado. But, the one thing that is evident from the last several months, is that this too is likely to change.

show time

I had tests from 6:15 am to 6:15 pm today.  The same as the last time I was here -- CT scan, MRI, chest Xray, blood work.  They did a pregnancy test, too, which I thought was hilarious (albeit a bit annoying).  I talked to the surgical oncologist (Satcher), and his team, and they're confidant.  More importantly, I met and spoke w/ the plastic surgeon (Oates), who I hadn't met before. While some of what he said was different from what Satcher had said, and what I'd read, he's also confident, so that's good.  Also, they moved the surgery up to the morning, so I have to check in at 5:15 am.  No eating/drinking after midnight, but who would want to eat/drink at 5 am?  No lotion after my shower, either -- my skin's already dry!  Both surgeons thought my radiation and graft looked great; Oates was shocked at how dry my graft donor site was (the difference between Colorado and Houston -- it still feels like a sauna getting off the plane here).  I'm going to try and get some sleep before the big day.

on my way

It was snowy and very cold this morning, but the Prius with studded snow tires is awesome and we got to our meeting on time.  Lots of folks wished me well, and there were emails, texts and calls coming in all day which was nice.  one of my colleagues shared that his 24 yr old, soon-to-be daughter in law has cancer.  My situation is depressing in many ways, but I can't even imagine being that young with a cancer diagnosis.  I told him he should be proud of his son not to have shied away from the girl he loved because she was ill.

When I got up to leave for the airport, I have to admit I almost burst into tears.  It's show time.  I'm off to surgery, and some level, as small as I will work for it to be, of disability.  Scary.  And sad -- for me, my family and friends.  Then, the drive down I-70 to the airport SUCKED.  What should have been less than an hour took close to 2.  I was stressed about making my flight, which had been reporting on time all day, but I should have known better.  It left an hour late.  Actually, given how bad the weather was, that's pretty good.  We'll be in Houston at 11:15, which means I should be at the hotel by midnight.  Glad I got into the hospital hotel last night, after 12 days on the waiting list!  Those random calls can be winners, as the guy at the desk the night I made the reservation explained.

Testing starts at 6:15 am tomorrow.

Time's Up

Running around getting packed, watering the plants, sending emails and hoping I've taken care of everything that really needs to be done. 

Meanwhile, Ben came home from school sick; he's been nursing a cold for several days, and even though he still doesn't have a fever, he was pretty miserable.  Still, better than his best friend who had whooping cough (and maybe strep). 

And, meanwhile, they're predicting 6 to 12 inches of snow overnight and tomorrow.  And frigid temperatures (not as bad as Thursday and Friday when it may not get above zero).  Great day to fly to Houston.  Even better day to drive to Golden for a 7 am breakfast meeting!  I am glad, though, that I got the studded snow tires put on 10 days ago after I slipped down the hill here on the sheet of ice!

I washed the writing off my arm.  Too bad.  It was cheering.  But I'm not sure the docs would have understood.  All my appointments are scheduled for Thursday -- starting at 6:15 am, and going through 4 pm.  So even if my MRI is 2 and 1/2 hours late (like it was last time), Bill and I should still be able to make our 7 pm reservation at The Reef, which is a seafood place that Bon Appetit rated #1 in the country last year.

The one appointment they haven't made yet is for the new plastic surgeon.  It totally freaks me out.  Satcher's team doesn't seem to understand that the reconstruction is as important to me as the cancer removal, in terms of quality of life.  Frustrating.  But as many of you have said in the last week, MD Anderson's reputation must exist b/c they really are good treating cancer.  Certainly it ain't b/c they're good w/ logistics or patient accommodations or those aspects of medical care.

Getting ready

I got my new schedule for Houston later this week.  Assuming that our airport isn't shut down by the big snow storm and Artic cold front that is blowing into town as I write, I'll be getting on a plane Wednesday evening, after an all day meeting in Golden.  Then, my tests start at 6:15 am.  Oy!  I'm hoping I'll be done in time to go to dinner w/ Bill @ 7 pm, but we'll see.  My MRI is scheduled for 4 pm -- the last test.  But in August, my last test was 3 hours late, so who really knows.  They changed the plastic surgeon for the surgery.  As I've said before on this blog, while I really really care about the cancer surgeon doing a good job, I feel that the plastic surgeon's role is equally important with me, because my quality of life going forward is dependent on how well he puts my arm back together.  So, knowing that the plastic surgeon is not the one my cancer surgeon would have chosen as his #1 is a little disconcerting.  Especially on top of the fact that I will meet him the day before surgery.  And on top of the fact that the appointment still isn't set up.  But I'm good, right?  I printed out the article about forearm reconstruction after sarcoma removal to give him, just in case he hasn't seen it. ...

tatooed

Some wonderful friends came by this afternoon for a visit, a drink, a nosh and to sign my arm.  This photo doesn't do it justice (nor is it a 360, which is really what would be best):

Ridiculous, I know, but it makes me laugh -- which is supposed to be the best medicine.