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Old 10-22-2011, 09:25 AM   #14
Mtngrl
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Join Date: May 2011
Location: Denver, CO
Posts: 1,427
Re: Finding Little Comfort in the Statistics of Survival

Great discussion. My thanks to everyone.

I do think there's a mind/body connection, but I don't think we either give ourselves cancer or cure ourselves solely with prayer/meditation/positive thinking or the like. However, I do think it's quite possible to kill myself with negative thinking, with giving up, with saying "what's the use?" And it certainly can't hurt to harness the power of the mind in service of a physical outcome that we prefer.

Except for one thing. I would hate for anyone who "fails" at that to think she did something wrong or she just didn't want it enough. On top of all the miseries of cancer diagnosis and treatment, cancer patients are supposed to be cheerful and positive. I think the subtle (and sometimes not-so-subtle) pressure to do that comes from society's uneasiness about death and dying. It's almost like I have to pretend I don't have an incurable illness so other people can go on pretending they aren't going to die. I have decided I can do them (and myself) more good by learning how to live as fully as possible.

For me the best balance is to live in the Now as much as possible (thank you, Eckhart Tolle and Jon Kabat-Zinn) and to cultivate an attitude of gratitude, wonder and joy. I realize the latter is helped a great deal by the fact that I don't feel sick. I may have stage 4 cancer but it hasn't affected my body much. The days I do get gloomy or grumpy are usually correlated with some physical complaint. I realize I've been lucky so far in that regard.

For me it's a matter of submitting to and accepting my own mortality and being happy, grateful, joyful and fully human not just in spite of that fact but because of it. It is my creatureliness that makes me who I am. It is this body, this mind, this spirit, this history, this unique expression of creation that is me, myself. Inevitably, mortality is part of it.

Nobody ever gets "done." My "do" list, my "bucket list," my hopes for the future, will be interrupted at some point, even though I will always want more. But I realize I can't let my wanting more blind me to the life I have now. I used to be very driven and goal-oriented. Then I noticed that every time I hit a goal I felt let down. That's because I kept thinking that realizing the goal would make me happy, and it never did. Then I figured out that happiness is not getting what you want, it's wanting what you've got. Happiness is what happens. I know a lot of people who don't have any obvious problems but who are miserable. And I have known people with incredibly bad luck and heartbreaking physical ailments and deformities who simply radiate love and joy. "I would be happy if _____ [fill in the blank]" is simply never true.

The Psalms often talk about the "sacrifice of thanksgiving." For me, the key to happiness and wholeness is to Be Here Now and be thankful--to radically accept my situation and quit wishing it weren't so or imagining that if I were in charge of my fate I'd design a better one. My ultimate destiny was set the day I took my first breath. It is certain that someday I'll take my last breath. OK, so now what?

I listen to guided imagery for healing. (As I said, if figure it couldn't hurt.) When I first heard one of the affirmations, when I was newly diagnosed and still freaked out, it was quite off-putting. But now I love it. It says something like, "More and more, I know that I can heal myself and live or I can heal myself and die. My wholeness is not determined by my physical condition."

I am whole, healed, accepted, loved and perfect in my imperfection, in my finitude, in my fragility, in my humanity. There's really nothing to be afraid of, and there's everything to gain from seizing the moment and loving it as completely as I can. The present moment isn't much, it's just all we have. It's all anyone has.
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Amy
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4/19/11 Diagnosed invasive ductal carcinoma in left breast; 2.3 cm tumor, 1 axillary lymph node, weakly ER+, HER2+++
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Start Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest/spine (one vertebra)
5/22/12 Stop taking Arimidex; stay on Herceptin
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
9/24/12 CT scan--No new mets. Everything stable.
3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed.
4/30/13 Begin Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally get hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in chest, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avid, original tumor more avid, one lymph node in mediastinum more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will also stay on Herceptin and Perjeta every three weeks.
12/11/14 PET Scan--no new lesions, and everything looks better than it did.
3/20/15 PET Scan--no new lesions, but lower lung lesions larger and a bit more avid.
4/13/15 Increasing Xeloda dose to 10 days on, one week off.
7/1/15 Scan "mixed" again, but suggests continuing progression. Stop Xeloda. Substitute Abraxane every 3 weeks starting 7/13.
10/28/15 PET scan shows dramatic improvement everywhere. All lesions except lower lungs have resolved; lower lungs noticeably improved.
12/18/15 Last Abraxane. Continue on Herceptin and Perjeta alone beginning 1/8/16.
1/27/16 PET scan shows cancer is stable.
5/11/16 PET scan shows uptake in some areas that were resolved on the last two scans.
6/3/16 Begin Kadcyla and Tykerb combination
6/5 - 6/23 Horrible diarrhea from K&T together. Got pneumonia.
7/15/16 Begin Kadcyla only every 3 weeks.
9/6/16 Begin radiation therapy on right lung lesion that caused the pneumonia.
10/3/16 Last of 12 radiation treatments to right lung.
11/4/16 Huffing and puffing, low O2, high heart rate, on tiniest bit of exertion. Diagnosed as radiation pneumonitis. Treated with Prednisone.
11/11/16 PET scan shows significant improvement to radiated part of right lung BUT a bunch of new lung lesions, and the bone met is getting worse.
11/22/16 Begin Eribulin and Herceptin. H every 3 weeks. E two weeks on, one week off.
3/6/17 Scan shows progression in lungs. Bone met a little better.
3/23/17 Lung biopsy. Tumor sampled is ER-, PR+ (5%), HER2+++. Getting Herceptin and Perjeta as a maintenance treatment.
5/31/17 Port placement
6/1/17 Start Navelbine & Tykerb
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