Hard and Harder Choices

Tuesday, March 13, 2012: It's late. I've been home from chorus rehearsal for about a half hour now. D and J have gone to bed and I want to join them, but I knew there would be some anxious people out there wondering how this day went for me. In one word--overwhelming.

I dropped J off early at good friend Carol's house and Linds & I were at the Huntsman Center by 8:15. Dr. Grossmann passed me while I was checking in at the reception desk. "See you in a minute," he said. Things started out well - I only had one needle prick to get blood drawn today. Easy-peasy. We hardly had to wait in the exam room before Nurse Carolyn came in to check me over. Linds & I were surprised to see her. She's been AOL for a few months now, so we were happy to know that she's still around. She felt my neck and I have to admit that it's a strange sensation, kind of like when you hit your funny bone. Those poor nerve ends are ultra-sensitive and just tingle when they're touched.

Dr. Grossmann and Nurse Karen came in soon after. Dr. G pulled his rolling chair right up next to me without hardly any "small talk", and the discussion that would affect the rest of my life began. And without watering it down at all, he declared that I was now a Stage IV melanoma patient, which really knocked me over. I've been re-staged and it really stinks.

I'm a person who loves details. I remember telling my missionary son once that a letter home was not complete without a multitude of details. I know there are people reading this entry right now, thinking to themselves that they want details too, especially about something important like this. But, I have to be honest. I am overwhelmed with the amount of information Dr. G gave to me this morning. I was also disappointed - I wanted to go to this appointment and have him say, "Here is what we've planned for you. Report to duty immediately." Instead, he gave me a bucketload of info and said, "Now, go home and sleep on it and then let us know what you've decided." I can't handle that much free agency!! So, over the next couple of days, as I digest (and throw up!) some of these hard, HARD choices, I'll try to give more details here. For now, here's the skin & bones...literally...

I have Stage IV melanoma. I have two little tumors near my duodenum that may or may not be pressing up against my pancreas. The first thing that must be done (and this was already decided, thank heavens) is to have a "pancreatic protocol" CT scan done. This scan will be able to tell the doctors if the tumors are easily removable or will require extensive surgery and reconstruction of part of the bowel, stomach, and pancreas, a procedure called a Whipple. (More words for your medical journal...) This is not a surgery for wimps. If you Google it, prepare to be depressed - I was. There's the first thing to pray for, that I won't have to have the Whipple. Second, I have to have a brain MRI to make sure the wicked melanoma has not sent his "cousins" there to live. I'm pretty confident this will be clear, but more prayers wouldn't hurt on this one, either. After those two things are done and checked off, then comes the big, BIG decisions.

Do I have surgery right away? Dr. Grossmann recommends it. Depending on that CT scan, I'll either be in the hospital a few days (simple, non-pressing tumor) or a week (more difficult with Whipple added in) and then about six weeks recovery. Scans follow recovery to make sure the beasties are all gone. OR...

Do I start on immune therapy? The new drug is nicknamed IL-2 (pronounced "isle-2"). It requires a Monday through Friday hospital stay, during which time 7-12 doses of this toxin are injected through a PICC line. I'm sick, but I'm in the hospital, closely monitored. On Friday, I go home, and after three days, should be feeling pretty normal again. However, the following Monday, I go back in the hospital to receive the second round of IL-2 until the following Friday. Then, I go home for five to six weeks...and have another scan. OR...

Do I enter a trial/study? This study is to determine if it's best to have surgery first or do immune therapy first. I would be randomly selected to go into one of three groups: A) surgery without follow-up drugs, B) surgery with a follow-up "investigational" drug, called BNG (which is used now on bladder cancer patients and people with TB, and which investigators would love to develop into a vaccine against melanoma), or C) best medical procedures (which would include all the things Dr. Grossmann would like me to do anyway). I know you're confused - me, too. I guess it will all boil down to whether I want a computer to determine what path I'll follow for a while or whether I'll make those decisions on my own. I think you can probably guess where I'm leaning, but I can't totally dismiss the trial, either. It's called a "study" for a reason. Should I be a small part of making sure we eventually find a cure - even a vaccine - against this ugly disease? My head is in a whirl.

Maybe I've given too much information, too many details. I want the Spirit to lead me. I want Him to tell me what to do. I want to feel good one way or the other about what's best for me and my family. It's a very hard choice that will not only affect me - it will affect everyone I love.

The CT scan/brain MRI are scheduled for next Thursday, March 22. Once again, my insurance company will make me w a i t... But at least I don't have to make a decision until then. What to do?

Check back tomorrow (or the next day). I'll have a little more uplifting news from today's visit then. It wasn't all gloom & doom. I did laugh a couple of times! But, my oh my, this information is weighing heavy on me right now...

(Picture: me in "hippy gear" after a Symphony Chorus gig at Deer Valley, where we sang, "Let the sun shine, let the sun shine in, the sun shine in..." by the Fifth Dimension... Peace, man.)