Wednesday, June 22, 2011

My Doctor and I Understand Each Other

It was a good day today. It was a bit of a lazy morning, then I sorted through Eddie's and my clothes to get rid of stuff we won't wear anymore to take to Goodwill. I also sorted through linens and blankets, too. I wanted to put labels on stuff in the garage to sort them into a dump pile, a garage sale pile, and a Goodwill pile, but ran out of time.

I then went to my office to pick up some articles and stuff so I can work on my blogger analysis article - some research on narrative medicine and such. Then I talked to my supervisor and was reassured that my decision to go on disability (at this point, temporary for the next year) was fine with her. Then I told her my ideas for things that I had to drop last month - things that I could pass on to others or what I wanted to continue for myself.

Then I talked to our school's accountant/assistant (formerly our office manager) about my grants and she informed me that she and another colleague intended to come to my house today to clean our our gutters, but my colleague had a last minute visitor and couldn't make it. Then it turns out that my colleague's 20-year-old son overhead the whole conversation about the gutters and informed them that he would come over in the next week to do them because (and I quote), "I don't want to see two old ladies up on the roof doing it". Wow! Totally unexpected. Thanks, S.!

Also, my supervisor and the accountant say that there are plans afoot to either do more yard work or to paint the house for us. Wow again! I feel so very fortunate to have such great colleagues. I should also say that a colleague's husband came over today to help my dad in the yard - he trimmed the shrubs in front of the house and hauled dirt for dad. The yard is really starting to take shape. Thank you, A.!

Then, it was off to see my therapist. I was apprehensive because I wanted to talk to Dr. K about my making decisions without consulting him, plus concerns about the areas in my armpit that aren't healing (the smaller areas suspected of either infection or cancer). We had a good discussion and it helped me to clarify exactly what I wanted to say to Dr. K.

Then it was time to see Dr. K. When I got in to see him, I said that I know that I made a couple of decisions to do the last two surgeries without consulting him. Part of the reason for not doing so was that he was out of town and also that I was afraid he'd talk me out of it. I also said that I hoped that making decisions like that wouldn't harm our relationship. I teared up a little from anxiety, but then he reassured me, "Don't worry about that [making decisions without me]. Those decisions are very much in keeping with the way that you make decisions." In other words, I didn't surprise him.

I proceeded to tell him that his comment about Christmas made me sad at first, but then it pissed me off and his reply was, "Good!" I also said that I thought he was trying to manipulate me to continue treatments sooner than I wanted and he just smiled. I just smiled back. He also said that sometimes, physicians have to be realistic with their patients - and in my case, I do need to make some preparations in case I die sooner than I think I will, particularly get my will prepared, etc., which I have been avoiding because I don't want to think about it. But best to be prepared.

So, then I showed him some of the research I found (namely, the piece about survival rates and brain mets) and then made my case for getting the skin mets under control. I told him about some of the things I found on the her-2 bulletin board at (I think) regarding skin mets. I told him about some other options, like topical treatments, testing my tumor's biomarkers/DNA?, and TDM-1.

Of all the options, he seemed to like the TDM-1 and said that we needed to get me into that clinical trial. So, I told him that Genentech has an application process by which he applies to be a PI for me on an individual use basis and he said he'd be happy to do that.

I was pleased with the visit. It seems that Dr. K and I understand each other. He supports my decisions, promised to look into some of the options I presented, and also to try to get TDM-1 for me. I'll see him again after whole brain radiation - and our mini-vacation to the coast.

I have been tired all evening though. It was an emotionally draining afternoon, but it was a good one. I feel that things are moving forward as they should be.

Surgery tomorrow. A good thing, too, because the chest tumor started bleeding a lot last night. Luckily, the nurse gave me a powder that clots the blood; even so, there is still some underlying leakage. I didn't change the dressing tonight (I changed it this morning) because I was afraid it wouldn't stop. I'll let my surgeon deal with it tomorrow.

Time for me to turn in. I'll write you all on the other side of surgery! Wish me luck for no complications like infections and too much bleeding. I appreciate all of your healing thoughts, energy, and prayers!

1 comment:

MisAnthropology said...

"Two old ladies..."

ahHAHAAHAH.... Bless those 20 year old males.