Friday, July 24, 2009

Frustrating, Fragile, Friday

First thing I want to say is I am okay. I am over it (for the weekend! I just have to explain the day - so don't take what I am saying as too negative. But then what the hey, sometimes you just have to blow off steam.

The day started out great. I had a good night sleep and actually felt pretty energetic when I awoke. I left for my healing touch session with Phyllis and was looking forward to working on healing and directing the chemo to my tumors. Phyllis noted my aura seemed much better since my last visit. As it turned out, my mind wandered over the last several years, when I was diagnosed in 2004 with my second tumor. Decisions were made, I had chemo - no radiation, etc. etc. In the course of the next few years no one every suggested any follow-up in the way of scans, etc. It wasn't until I pushed and pushed that my (then) oncologist suggested a breast MRI and bone scan. I saw the tumor on the CD that was given to me by the techs. My oncologist insisted it was nothing, but again I pushed. I went to my old breast surgeon who had it biopsied, and was told my cancer had recurred.

I stuck with my old breast surgeon and also saw a member from my first oncology group (used in 1991), and did get a second oncologist opinion on treatment. Something in my gut told me I should break out of this system and go somewhere else. It was becoming more apparent that my surgeon was living off his glory (he was a pioneer in BC care in Philadelphia in the '90s). The oncologist from the old group was droopy, matter of fact, and housed in the dreariest offices I have seen shy of the Quest labs! The second oncologist I consulted at Penn was big, tall, loud and offered pretty much the same. Either go for broke and get hit hard with chemo or wait and see, altho he was not willing to test periodically (be pro-active). His theory was, wait until symptoms appear.

When we were in the Bahamas I had severe pain that was coming from the 4th rib, the area near where my cancer was. I saw a doctor in Marsh Harbor (young guy), who suggested I consider flying to the mainland for follow-up. I called both my surgeon and oncologist - who both said, treat the symptoms. If it is anything, it can wait. In all honesty, when it cleared up a week or so later, I really thought it was nothing - that perhaps I pulled a muscle when doing something on the boat. When I came back in April, I did see the surgeon, but again he said it was probably nothing. I accepted that verdict.

NOW - understand, I am not angry about the past, and I am not focusing on the past - this stuff just came up today. We'll talk about lessens learned shortly.

When I learned that the cancer had spread, I was determined to get another opinion, and find a team that works with the latest technology and is up on the latest trials and studies in this area. I quizzed my former oncologist on what trends he was seeing and he basically shrugged his shoulders - and as an aside mentioned one area of study.

Well, I found a new team, a new system with a person who is active in the oncologist community. My first treatment seemed to go well, until I was told I wasn't to come back for 3-weeks. The oncologist told us that I was to go every week for 3 weeks, then have a week off. Apparently the dose I was given was very strong, and couldn't be repeated next week. So, again I am in limbo, waiting to hear just what my treatment will be. (FRUSTRATING)

Yes, I am trying to focus in the moment - and only worry about the things I can change, however, all of these events eventually surface - probably need to surface so they can be finally pushed out. Hence I am feeling rather FRAGILE right now as I try to sort it all out. As an fyi - I do have an appointment at Fox Chase in August.

But, as things go, after my teary call with my sister Jean, I opened an email from my cousin Richard. He reminded me about his wife who lived with much tragedy in her life, yet she never felt sorry for herself. I remember what a lovely, sweet and happy person she was and it made me smile.

So, the point of all this, LESSONS LEARNED (and not the obvious):
  • always question your doctors
  • always go with your gut
  • don't live in the dark and be ignorant about your illness - get on the Internet and learn
  • but then that means face the demon - not always easy!
Today was a difficult day that ended up being a much better day - because of all my helpers out there!


annod2 said...

"Wise men have come to you to give you of their wisdom. I came to take of your wisdom: and behold I have found that which is greater than wisdom. It is a flame of spirit in you ever gathering more of itself." Gibran

You are an inspiration to me and all who know you. I love you.

patagonie said...

Dear Mary,Yesterday Bert and I had dinner with my dad and Maartje. He told me about your cancer and gave me your blog-adres. I've red your updates and and want to tell you: don't worry about your readers, if the updates are interesting or not. If it feels like writing, just do so! No wise words from my side, just a very big supporting hugg! You are a very special women. love Frederique and Bert, Amsterdam