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In answer to a friend who wants to take me to the "new body store"..


She says, "I am familiar with lymph glands...but I'm not familiar with hilar. Where and what are those? So I am tactless enough to ask, what will the cancer moving into the bones do/mean? Is this unusual or par for this kind of crap? Are you in pain from any of that? I know the chemo is doing a real number on you.... God grundoon, I know it's been said again and again, but this is all so unfair. I wish I were out there and could help you and yours in some way. My love and thoughts are with you.."

Hilar lymph nodes are around your lungs and trachea. The lymph nodes are trying to keep the breast cancer cells from moving into other organs, like lungs and liver and brains, so they are doing their job. (Poor immune system, it never gets a break.) There's now lymph nodes along my collarbone, down along my trachea, and a couple of other spots where they are doing their level best to contain spreading cancer cells. The human bod is an amazing thing.

Breast cancer tends to go to the brains, bones, lungs and liver as it spreads, just as ovarian spreads around in your lower guts. It's just conveniently spreading to the closest organs, and it likes things with an ample blood supply.

Bone metastases can be nasty because they can apparently get very painful. Mine are currently small enough that I wasn't really experiencing any pain, and we caught it fairly early. Here's a cool thing - bones are being eaten up and replaced all the time. Osteoclasts and osteoblasts, respectively, remove old calcium and make new. Who knew? The drug I'm taking (not chemotherapy) partially blocks the osteoclasts, so the bone makers get to work overtime. Chemotherapy kills the cancer cells, osteoblasts come in and make me some new bones.

Breast cancer tends to be "responsive", which means a high percentage of people have their cancer go away or decrease from a lot of different kinds of chemotherapy. I still have many choices, including some new ones, Gemzar and Xometa, and then heavy metals like platinum, and thalidomide, or I could repeat adriamycin. All poison, basically, so all have side effects, and that's the yucky part.

Sweet pea, everyone has to die of something. I will probably die younger than I want to, but doesn't everyone? OK, my grandmother was 94, and I think she felt as though she got fair innings. My mom was 61, and certainly we didn't think she got a reasonable amount of time. We are just all hyperaware of it in my case because I have a nasty, chronic, incurable and ultimately fatal disease. But it's also just scary because our culture finds cancer scary and mysterious. Cancer is loaded with societal mythology, way more so than heart disease, even though heart problems are more common. Part of it is that from about 1940 when cancer started to get more common, until about 2000, cancer death rates were climbing - so it's still considered a death sentence, when it's really not, any more than HIV is. So for our parents' generation, it was something people whispered about.

And don't get me started on the pink ribbon brigade. The message that if I had just been perky enough and pink enough I would have "beaten" my cancer is not, shall we say, a useful message. There's 130-some odd women with metastatic breast cancer in my online group, and to a woman, as far as I can tell, we all HATE breast cancer awareness month. We are the invisible survivors - not members of that club. But nobody dies of stage two breast cancer. Everyone whom it kills, dies from metastatic cancer. Makes you wonder why only 5% of the research money is spent on this stage. Follow. The. Money. Astra Zeneca is making a fuckton of money on, you guessed it, tamoxifen. Prevention? Hell with THAT, when they can make money off of those lucky 1 in 7 women who will have breast cancer in their lifetime.

On that note, I have several pink ribbon water bottles, (they were really cheap) and my dear Tracy edited one for me. Where it used to say Breast Cancer Awareness, it now says Beast Cthulhu Awareness, and on the back it says, The Great Old Ones still slumber...
NyaHathotep, the Crawling Chaos, walks the earth...
Yog-Sothoth lurks always in wait...
Pray to be eaten FIRST.

This new bottle makes me feel ridiculously happy. Is this gallows humor? I think it is, but it still is good. Beast Cthuhlu Awareness.

/begin rant - If you give money to a cancer charity, PLEASE make sure they discuss prevention in their propaganda, NOT a cure. If they only talk about a cure, dig down, and I'll bet you they are at least partially funded by a drug company, an insurance company, or both. Susan G. Komen is. WhyMe? is. Thank you. Breast Cancer Awareness Month is./end rant

We, American adults, are still more likely to die of heart disease than anything else. Canadians, interestingly, are more likely to die of cancer. US is 1) heart disease, 2) cancer, and 3) stroke. Canada is 1) cancer, 2) heart disease, don't ask me why. Differences in the health care systems, I suspect. Here, if you can afford it, you can get more and fancier cancer care, and the US has a slightly lower death rate, something like 29% as opposed to 32% of all natural deaths attributed to cancer. Most first world nations hover in the low 30s for overall death rates from cancer. But a diagnosis of heart disease isn't nearly as scary as cancer. Why? The illness, not the disease. Our ideas and beliefs about cancer, not the actual facts of cancer and cancer treatment, or survivability.

I don't plan to croak any time soon. Think of it as diabetes, a chronic disease that is being treated, and the treatment is sort of nasty, like I'm sure dialysis is. It's not exactly parallel, but it has similiarities. I have a friend with Lou Gherig's disease, and from what I can see cancer is an easier roller coaster to ride than that is.

Love to all,
grundoon

When grundoon posted this in 2011, I was so sad.....

....because it was not true, even though I wished it was.

The perils of being the doctor sister.

It was clear that grundoon's cancer was progressing. Yes, she could request to continue treatment. Yes, they would keep treating her....

....but it wasn't working.

The hematologist-oncologist chooses the best treatment first. Grundoon was 41 and very strong and healthy so they hit the cancer as hard as they possibly could. Chemotherapy, mastectomy, radiation therapy, a second degree burn on her chest wall. It was stage IIIB to start with. Cancer is staged 0 to IV. Zero is "carcinoma in situ", cancerous cells that have not even invaded their neighbors. Stage I is very local. Stage IV is distant metastases. Stage IIIB of ductal breast carcinoma means multiple lymph nodes, but not the ones above the collarbone, and no cancer in bone, brain, lungs or liver.

She had two years in remission.

The cancer recurred with a metastasis above the collarbone. The cancer had morphed as well, as it often does. Most, most, most of the cells were killed... but those that survived... were different. Now she was estrogen receptor negative, progesterone receptor negative and her2 negative. All genetic markers which help decide which treatment is best and how to target the cells. More and more are being found.

Our mother died of ovarian cancer. I went with her to her oncologist only once. My mother said that her CA 125 was rising, and of course she could do more treatment if she needed to. The doctor said something positive. I followed her out of the room. Once the door was shut I said, "My mother is talking about another clinical trial! She can't do that, can she?"

"No," said the oncologist, "Of course not. She is too advanced. But we will treat her for as long as she wants."

Whether it works or not. Because she wants to be treated. In spite of diminishing returns.

Grundoon passed her five years from the day treatment ended. So technically she is in the five year survival group even though then she died. When she was diagnosed, the five year survival for her type of breast cancer and stage was about 5%. It had improved to 17% by 2011.

Her oncologist told her "I am referring you to hospice." in the spring of 2012. She went to San Francisco to talk to another group about a clinical trial. But it was too far and too late. She refused hospice until about two weeks before she died. Fight to the end, she was willing to fight even when the oncologist said, "You are dying." She had promised her daughter and promised her husband.

I saw her three times in the last two months before she died. She seemed angry to me on the last visit, glittering, knife edged. I tried to sing a lullaby, but she wanted something else. "Samuel Hall?" I guessed. She smiled and I sang it. My name is Samuel Hall and I hate you one and all. To the gallows I must go, with my friends all down below. Hope to see you all in hell, hope to hell you sizzle well, damn your eyes, damn your eyes. Then she trusted me to be present whether she was angry or sad or confused or once even happy, glowing, transported, transformed....

Some people do not go gentle. That is their right. It is their death, not ours, not mine.


her2 positive: http://www.mayoclinic.org/breast-cancer/expert-answers/faq-20058066
breast cancer types: http://www.cancer.gov/types/breast

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