Showing posts with label local hospital. Show all posts
Showing posts with label local hospital. Show all posts

Saturday, April 18, 2015

Going ahead, going ahead...

I've been in a tailspin down down down this week even as much as I knew better, I couldn't refocus my brain. I have been dealing with heavy coughing this week. It is really annoying. I also am dealing with some new pains that really upset me. My brain surprised me. I hadn't thought cancer when dealing with pains in the past but this time I freaked out. I haven't talked with my oncologist yet but I'm now down off the cliff, mostly. I noticed an odd bruise in the lumpectomy area which was worrisome and my scar tissue under my armpit felt terrible. Additionally my right lung returned to having that butterfly thump when I breathed in/out and some sharp pains in other areas of the lung. I know I'm acutely aware of my body and the signs it is giving me. I'm also aware that I have a lot of nerve damage after surgeries and radiation as well. So. Shall see what my oncologist thinks on Monday. Hoping that I actually sleep tonight. It didn't help that this week has been abysmal for sleep... with the coughing, pain, and more I've been a bit miserable. I think the anti-inflammatory has helped lessen the amount I was dealing with on Monday. The worst was Wednesday when I couldn't hold up the book I was reading to students with my right arm and I had to pause at times to deal with the pain spasms. Coughing randomly throughout the day doesn't help matters. I've taken cough medicine and no, it doesn't help. Lung pain might be an infection although I haven't had a fever... will find out soon.
So... yeah. Dealing with that.
The local hospital situation is over. My husband went in for me on Friday to talk with the oncologist who said the team of oncologists discussed and decided on option 1- wait and see. Heck no. That's not our plan. That's not ok with us.
I never cancelled my chemo appointment with my oncologist so that's on for Monday. Told the insurance company and the other person who encouraged me to check with the options at the local hospital the results. Done with one unknown. Gonna get thru this.
Really enjoyed the conference I attended with friends. Had a fun bbq fancy dinner with Megan the night before. I feel amazed at how lucky I am to have wonderful friends, professional development that inspires, and can't believe that I live here, in Hong Kong, where I can hop on a jet boat with a few hundred people and travel to another region... just a Hong Kong id card and passport and hello Macau. I'm not a gambler so bright lights and glitz simply make me chuckle. Serious security guards in banana yellow formal jackets make me chuckle as well.  Had a fun time there.
Thanks for journeying
My friend I've met thru a cancer support group sent me this. So true.

I liked the lighting at the hotel we stayed at...

Monday, April 13, 2015

Being Incredibly Controversial

My oncologist warned us. He said, "I know I've gone on what others consider a very aggressive route with your treatment. If you talk with an oncologist at the local hospital, I know this will come up as controversial."
Why yes.
Yes it did.
I haven't heard someone say the word 'controversial' that many times in the space of 20 minutes before. The local hospital oncologist said that my oncologist has gone the extreme route all the way through... including radiation, etc. The local hospital oncologist flat out told us that there are three choices that they could make to support me:
1. Do nothing and watch how I'm doing simply with scans, etc.
2. Treat me with chemo only partly with Taxol and Carboplatin
3. Treat me with chemo cocktail that my oncologist planned and gave me before: Taxol, Carboplatin and Avastin.
The oncologist said that in most cases they would only select #1. After further discussion with my husband about finances, our choices, and our plan, he said that he needed to get back to us.
He is going to meet with a panel of oncologists on Thursday and see what they suggest. Then my husband is going to go to my appointment on Friday (as my proxy) and find out what they say, possibly with me on the phone.
My husband said: "You don't need to form and opinion or think about this until Friday."
Ok then.
In waiting mode but grateful that there's an option we're exploring and that we're also in complete agreement that we are not compromising with my health plans.
If we go with the private oncologist I've seen the whole time I'd start chemo next Monday. But shall see what comes of the local hospital first.

Some interesting points this local hospital oncologist shared:
1. I reacted well in the past to the chemo but there might be new worrisome side effects
2. Taking more of the chemo cocktail might make the chemo less effective in the future if (god forbid) I need chemo again.
3. There's no proved research that says that more chemo is effective, many oncologists are doing one of the three options above without any collective data.

Hmm.
Controversial.
Just want to live day by day appreciating life, thank you. Trusting my oncologist at this point but forcing myself to be patient til Friday since money is a factor. Sigh.

Thinking about Bali, roof of one place we stayed at...
Today at work I received many compliments about how good I'm looking, healthier, etc. Some mentioned how nice it was to see the curls coming in. Sigh. I joked with one person "Just in time to get more chemo" and startled her. My sense of humor is still twisted a little tight I guess.
Glad I can see where I'll get back to hopefully by August/September/October (maybe I'll have curls by my birthday this coming year, that'd be a heck of a lot better than the past two birthdays) after this next round of chemo. I do feel a little whiny and have thought over the past few days how it just isn't fair. But what is fair in life at times? There are terrific wonderful days and there are tough days, riding those waves... Bearing up, dealing, and not thrilled but coping.

Thanks for journeying with me as always...