Saturday, July 7, 2012

19 days into the pain med reduction regimen. 4 days ago I dropped the dose down another level. I'm doing okay with it; nothing is worse. Things aren't actually better yet, so I'm still thinking I will need to get completely off of it. I am also wonder if Tamoxifen has anything to do with the anxiety and depression, though it hasn't started changing any tumor marker numbers, so it may not be working. And I really hope my pain levels are bearable as I reduce this pain medication. I may try the next drop at a two week interval.

At my doctor visit this week, we thought I had been on the Tamoxifen three months already, but as I'm looking at my calendar, it has only been 2 months. My tumor markers rose more (CEA to 140 - remember, it's the trend that counts) this month, but I think I can safely give the Tamoxifen another 2 months before my doctor will start nagging me about Xeloda or Gezmar (? Gez something).

For anyone keeping track, Tamoxifen, while generally a first line option, is my fourth in line hormonal. Fourth and last option before diving into chemo. I don't know if I want to. How long really can living with side effects from the chemo extend my time?

I had a PET/CT scan done yesterday. I will watch my phone for the next few days (starting Monday; scan was on a Friday...a long time ago I swore never to do that, but it didn't even cross my mind this time). The doctor will be willing to give Tamoxifen more time if the cancer is still contained in the bones. Something is going on, based on the rise in the tumor markers over past six months or so, so the scan results will be interesting. Yes, I have a disc, and they look pretty much the same as the last one. But no, I don't know how to read them, so it's really just an addition to my collection rather than a piece of useful info.

A big issue for me right now is loneliness. I face all these issues ultimately alone. I have no partner to help deal with insurance and bills and decisions. I talked to a fellow stage IV patient at the doctor's office about an insurance issue going on right now, and she wasn't even entirely aware of it...implying that her husband dealt with all that.

(The insurance issue: Banner Health has dropped my doctor's office from its contract. In short, they are dropping all community practices to force anyone on a Banner plan to use the oncologists at MDAndersen at Banner Gateway. Should have seen that writing on the wall. I am now faced with getting a continuation of care processed after the 18th and before my next appointment, or changing my Primary Care Physician to get off the Banner network. I want off the Banner network. I don't want to change PCPs.)

Loneliness. I feel the future and ultimate cancer crap sneaking up on me and I know that even though I have family near (sisters and mom) and my son, I am ultimately in this alone. I'm in charge of everything. Today I went on a day trip up north for an anniversary party for an aunt and uncle. My sister drove, and another sister, my mom and I rode with her. It was so nice for that portion of today to feel like I had turned everything over to someone else. I just had to be along for the ride. I really wish that in my LIFE I could, at this point, just be along for the ride.

My son does so much for me. I've realized how much I depend on him just being with me, as Sunday comes around again, and I realize he's not going to church with me, as he has started attending the Single Adult congregation. Good for him. Really hard on me. Hard for me to go without him.

While loneliness if my big depression issue right now, my son's future is my biggest worry issue. Thank goodness he is not a small child with a mother facing this, and my heart breaks for those who have small children in this situation. But I don't think I will be around long enough for him to graduate from college and get on with his life. If I died tomorrow, he would not be ready to be on his own. He has never had a job. He's struggling through college. I worry about affording his medication (for ADD) that will allow him to get through college. If I died tomorrow, or in a year, would his father step up, and take him in, and make sure he has what he needs to finish college? I don't trust in that. I really REALLY feel I need to be around for him to finish college and  follow his dream  to go and teach English in Japan. Maybe that means I am going to have to suffer through chemo side effects long enough for him to finish school. Getting him graduated is going to be  Herculean. I see it being iffier if I am not in the picture.

Sometimes in the middle of nothing I just burst into tears over this.

Hour to hour is my battle with this depression and anxiety.

1 comment:

Nancy's Point said...

Oh Shelli, I'm so sorry for all the crap you're dealing with. It's too much. It breaks my heart to hear you say you feel so alone. I'm out here. I hope that helps a teeny-weeny bit.