When to change tracks? The Talk

[Kathy S in Tokyo]

I was expecting this talk sooner or later and today was the day. I nursed a cold all weekend and although I feel better now, I still have laryngitis. I went in for my usual pretreatment blood draw plus an x-ray to see how the Navelbine is working and the Navelbine is now applying for unemployment. The spots in my lungs have grown in spite of the continued Herceptin and Navelbine and my heart seemed a little enlarged in today's x-ray so I had no treatment today (which was the bonus, a day off!).

While giving me a very thorough exam and checking to see how much oxygen was circulating with one of those finger sensors (plenty, he was glad to report) he gently approached the subject of palliative care and end-of-life preparations. He wanted to know if I'd made any special considerations and stressed that he wants me to have quality time while I'm around and that as I'm not showing any symptoms of the lung tumors (like palpitations or getting out of breath easily) that now might be a good time to work on my Bucket List.

He asked about the home situation and listened while I explained about how much support at home I could expect from past experiences (um, not much) and then insisted on walking me down to the counseling and welfare coordination office to introduce me, hand them my file and explain a little about the complications that he hopes they can work out for me. Then he asked them to get as much info together for me about palliative care and hospices, in hospitals or at home with home nursing etc. and financial aid for a discussion on Friday, when I also have an appointment for another heart scan (looks like it's sayonara to vit. H for a while).

Next Tuesday I'll have a CT scan to get a better look at the situation. It was very sweet of him to do that for me instead of just telling me to stop by there on my way out. Probably as an apology that Tykerb is still in the pipeline and won't be approved in Japan until spring at least (I'd been hearing "this winter" until today.

I had a British friend with me today and she freaked out a bit when she saw my onco. escort me to the counseling place, but gave me real big hug when I explained what had gone down. Then went out and laughed at death's face by indulging in steak for lunch and an evil dessert (which we split and still couldn't finish) with some restaraunt vouchers I'd won from a magazine before heading home. Now it's back to broccoli, squash, carrots and brown rice for me. The restaraunt had fully automated toilets; I walked into the stall and the toilet lid whirred and raised itself, making me jump a bit before bursting into laughter.

Home for a nap (no treatment, too much lunch!) and then online to check for local resources again and update my files so I can have a list of questions for my Friday session. PLEASE FEEL FREE TO TOSS IN SOME SUGGESTIONS HERE ABOUT WHAT I SHOULD BE ASKING REGARDING HOME CARE ETC.
I'm sure some of the stuff will be a little culturally different than for Hospice in the U.S. and it'll be intersting to see what the deal is here. One of my seasonal survivors' lunch friends can help with info as she has National Hospice Association connections.
Anyway, I have some goals bumping around in my brain:
1. Accept that I'm not just letting go and living in anger or despair,
but choosing to enjoy as much quality time as possible and live
positively until the end.
2. Get over this grief!
3. Get as much info on hospice and palliative care in Japan as
possible from NCI, the internet, friends etc.(I already found a Home
Nursing Station that offers end of life care that's in our
neighborhood to deal with medical things and will ask around and see
how the people in our building have felt about them in past cases)
4. Prepare husband and kids - This is a bit of a monumental task, but a few baby steps at a time are fine.
5. Make a Bucket List
(GO SKIING WITH THE KIDS THIS WINTER!)

Looks like I'll go back on Taxotere for a few more rounds from Nov. 18 or 25 as it was effective in the past, and then when the limit is reached, take a break from treatments and let my body recuperate while I have as much fun as I can with my kids. And here I was thinking I should go get a trim. Maybe I'll get curls again the next time I get hair. Shall we take bets?

Biding time until my folks are up so I can call before I post this on my blog.

Hugs,