11.04.2008

The Talk and a really strange toilet experience...

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

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 interesting 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 watch and wait.

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?

19 comments:

Tigermama said...

Dear Kathy,

I have been following your blog for some time now (from MIJ) and I just want to say that I`m so sorry this is happening and I will keep you in my thoughts and prayers.

With love,

Tigermama (Suzan Higuchi).

Implosion said...

You're facing this with such a positive outlook- that's your best weapon. Hold on to it. Big hugs from across the oceans.

debbie m said...

Kathy, go with the "kick butt" and keep on fighting. You have a wonderful attitude and I admire you very much for it. In my prayers and thoughts.
xx
debbie

Monique from the Netherlands said...

Dearest kathy,
I am so sorry to read this sweetie, I admire you for dealing with things the way you do,enormous huge hug and go for your goals,

Monique from the Netherlands

Anonymous said...

I too have been following your blog for a while now. I wish you the best and I so admire you for your courage and your positive attitude. You are so amazing.

Noreen Baba AFWJ

ElaineM said...

I posted some things for you on the her2support.org website.
I will be thinking of you and hoping for the best.
By the way, I am glad you are planning to celebrate Thanksgiving in Japan. Sounds good to me !!

RW said...

Your courage is amazing. you have lots of loving friends around you at your beck and call. Just say the word!

Anna said...

All the best from Iceland. You are a true hero to me the way you handle this situation.

Makayla said...

Kathy, I didn't expect to read this any time soon. In fact never! What can I say but that I love you very much and that till one is alive they should be living, as you are choosing to do. If there is something that needs to be done it will be done - never worry even a bit about that. You and yours will be taken care of. You have a wonderful attitude that I admire! Maybe grief is not to be gotten rid of, may be it needs to be embraced just as joy needs to be embraced because it is just as natural to life as joy is and there is always love in it. I love you very much, Kathy! I want you to know you can depend on me and I and all your other friends are there for you to laugh and to cry and to enjoy and support - to do all that is needed and I pray for a long, long time too! Lots of love and a big hug, Makayla

Viki in Chiba said...

Dear Kathy,
My prayers are with you too. This world is not fair and you have certainly had your share of the pits. Only on the other side will we have eternal happiness and all our questions answered. I hope you can do all on your bucket list.

thefukases said...

Wow Kathy, I have been following your blog for a while now too (you seem to have an army of AFWJ lurkers here!) and I'd love to give something back for all the laughs and fun you've given me. Do you have a wishlist bucket? If you want a budget ski trip I live in Nagano and you're (all of you!) welcome to come and stay anytime. Can't promise it would be too relaxing though... :)

thefukases said...

Wow Kathy, I have been following your blog for a while now too (you seem to have an army of AFWJ lurkers here!) and I'd love to give something back for all the laughs and fun you've given me. Do you have a wishlist bucket? If you want a budget ski trip I live in Nagano and you're (all of you!) welcome to come and stay anytime. Can't promise it would be too relaxing though... :)

emma in zushi said...

Dearest Kathy
I was hoping that this point would never come...
you are such an inspiration with your hope and love for life. Can you make room on your bucketlist for an MIJ Xmas lunch? will get in touch with details soon. Look after yourself.

Debora Marcus said...

Kathy,
I am Gillian's friend and she has been describing your odyssey for while. I am sure your family has told you that health care here is a morass and unless lucky enough to be accepted into a drug trial, one is left to dangle in the wind. Moreover, only the very best insurance covers emerging drugs.
I am firing up my infallible St. Jude candle for you and fervently hoping that Norman Cuzzin's ( I am sure my spelling is fiercely incorrect) prescription for keeping cancer at bay will work for you. Faced with a numbing prognosis, he worked his way through the comic film inventory of Blockbuster Video. In a subsequent and inexplicable remission, he attributed it--and the eventual cure--to laughter. He was, of course, considered a crackpot at the time--over 20 years ago. However, the medical establishment now recognizes the possibility that the hormones released by laughter (serotonin, perhaps) are, indeed, beneficial. While not a miracle cure, it can't hurt.
Meanwhile, here goes my Shoprite St. Jude candle and have you heard the one about the rabbi, the priest and the ........

Mee a Bee said...

Your attitude is just amazing Kathy. I keep you in my thoughts often.

Jacqui
(from tell n sell, j-crew trousers)

Suzanne said...

You have been in my thoughts since I moved Kathy, and you will continue to be there daily. I hope you'll take Emma up on her MIJ get-together idea; I will be there in spirit.

ailsa said...

Hi Kathy

Another follower from MIJ here. You're posts are always so upbeat that I never for a minute thought things weren't going so well with the treatments.
You're so brave and an inspiration to us all.

Preparing your family must be one of the hardest things you'll have to do but I hope you get to do all that you wish for, with them by your side.

Keep fighting!
Ailsa

jojoebi said...

Hi Kathy,
I also didn't expect to be reading this for quite some time, you are incredibly strong, I am pretty sure I couldn't blog to the world the way you do if I were in your shoes.
Please share your bucket list, I would love to help out with whatever I can.
Take care and keep up that ass kicking attitude!
Jo (also MIJ)

Midori said...

Hi Kathy,

I haven`t been able to catch up with your blog for a while now and I just wanted to say that I am sorry to hear that "the talk" has taken place. You do seem to be approaching it with your usual style and grace though. I will keep you in my thoughts and prayers. Please make sure you post your bucket list. A good friend of mine died of Leukaemia in October and never got to do any of his as he never made it out of hospital after he was re-diagnosed but now his sister and I are making it our mission to work through alot of it for him, in his honour. i have every faith that you will be able to make your way through yours though. You are truly an inspiration to us all.

Midori xx (Off to the beach today where I will try and keep my boobs in my bikini top! LOL!)