Mom update

Monday I took the day off of work to go with Mom to her appointment with the clinical trials people up at the Huntsman Cancer Institute. (I always say "up at" and I realized it's because the hospital is literally one of the buildings at the highest elevation in the SL Valley and is visible next to the "U" from almost anywhere... ) We got up to the Huntsman, found our way to the back of the 2nd floor and got her paperwork done and all checked in. Then, we sat in a room for a good 30 minutes before a social worker came in to remind us of all the services they offer. After another 20 min. or so, a "fellow" came in. We learned that after an internship, you do a fellowship before you become an actual real doctor. He talked with us for a while, taking notes, double checking information he'd gotten from all her medical records of the past seven months, and asking questions. It's always so funny to me how no one believes that she's not on any medication, has no pain and doesn't have bowel movements. Once we got all that cleared up, he explained how clinical trials works.

Apparently, more clinical trials are for un-FDA approved drugs that require the patient have an indentifiable tumor that can be tracked. Mom does not have one of these. They also need platelet levels to be relatively high and stable. Again, Mom does not have this. One trial this guy thought she could get on is one that reduced blood flow to cancer cells, but without consulting the "real" doctor, he couldnt' say.

Clinical trials require 6-8 weeks at the onset of commitment. The first two weeks you are required to be at the Huntsman 5 days a week for 6-8 hours a day. They have to track your levels of everything on a constant or very, very regular basis. After the first two weeks, you then come in once or twice a week if you are doing well. If, after the 6-8 weeks you are responding well with the drug, they keep you on it indefinitly. The drug company will pay for all your treatment if you are doing well on their drug.

After the "fellow" left, we had the real doctor, Dr. Sharma come in, with the "fellow" and two nurses. He pretty much said that until they run more tests, they can't really offer any sort of treatment options. She has to have a PET scan, which apparenlty uses glucose as the contrast element (as opposed to iodine in a CT scan) and is more clear. They are also sending some of her cancer cells they took out in Oct. to Phoenix for gene/mutation testing. Once these two tests are in (about 3 weeks), Mom will meet with these people again to see what they say.

Mom is sort of frustrated, I think, that no one has any clear answers and she's always left hoping the next round of whatever will make some change in how she's doing. She's down to 107 pounds and is just sickly skinny. She's tired a lot but not having had chemo now for about 3 weeks has made her feel a little better.

She gave an amazing talk at the adult session of Stake Conference about dealing with trials. I pretty much cried through the whole thing not knowing how much suffering she does that none of us will ever know about. The visiting general authority, Elder Fisher requested that she talk and on that subject. A woman in the stake whom Mom doesnt know, sent her a gorgeous boquet of flowers on Monday thanking her for her words and faith.

I literally keep hoping that the next time she does in for a scan the cancer is all gone and we can quit worrying about the length of her life. It could happen.

clinical trials...

Wednesday Mom went to a check up at the Huntsman. Her surgeon told her that after three unsuccessful rounds of chemo, cancer can actually become immune to treatments and so the next step to consider it getting in on clinical trials the Huntsman is constantly doing.

Friday, when meeting with her oncologist, Mom and Dad pretty much decided that doing the experimental treatments will be the next step. The oncologist said that nothing has really changed and they'll do more CT scans next week to verify that nothing has really changed and hope that nothing has gotten worse.

After the CT scans and an appointment on Friday to compare new results with last resutls, they'll schedule a consult up at the Huntsman for the trials program.

At the point, I've only talked to Dad about this and he is being pretty stoic and practical about it all. I guess at this point, it looks like anything will kill her (chemo, cancer, etc.) so you may as well do the "crazy" things and hope that something works.

Mom is still hooked up to her stomach tube all the time, has started throwing up more again, is on IVs about 18 hours a day for nutrution and fluid, and has grey hair growing in on her little head. Her hair looks like she got a buzz cut and it's really, really soft.

Mother's Day 2010

Changing topics: We had a good Mother's Day. I put together a picture collage of my siblings and myself with our mom as babies and little kids. As I put it together, it made me realize how much I miss my mom. She's such a different person now and I miss the woman I used to find. And I think I'm beginning the grieving process now and coming to grips with the fact that the woman she used to be is gone and no matter what happens, everything is different now and we just have to adapt and move in. It is what it is.