Saturday, July 25, 2009

I face my own Mont Ventoux.

If you follow the Tour de France, which all of us do in this household, you'll know that Mont Ventoux is a sheer climb, known as "the wall" for the men of the Peloton. This year, Mont Ventoux comes at the end of the race, just one day before the race culminates at the Arc de Triumphe on the Champs Elysees in Paris. The arch of triumph on the Elysian fields.

In Greek mythology, the Elysian fields are the final resting place of heroes and those of great virtue. The Arc de Triumphe is a triumphal arch which was built to commemorate battles by the victorious, in this case, Napoleon commissioned this monument to his successes.

Why such a title, then? Largely, due to frustration, hence, my Mont Ventoux. I make no secret of the fact that I am a Stage IV breast cancer survivor. Lately, the pain in my hip has gotten much worse. My right hip, the area where I had the bone metastases in 1997 is weaker, in addition to being very painful. While this is quite literally a pain in the butt, it is also a little scary.

No. Correction. Make it a lot scary. While I could live with the fact that it hurts, my tumor markers have risen for two checks in a row. I'm out of the "OK" range and into the problematic range.

My Oncologist shrugs and says that for some unknown reason my markers rise and fall. However, I'm a little concerned because they usually don't stay elevated for two times in a row (three months apart). He calls tumor markers "cooties," in that if they are really significantly elevated they tell us something, but in situations like mine, they may mean something, they may mean nothing.

Then, he cheerfully told me "Besides, even if it is cancer in your pelvis again, I wouldn't do anything different. As it gets worse, we'd use radiation for pain control."

Ducky, just ducky. Now the other frustration is this. You can't miss the fact that I am having trouble. I favor that leg. My neighbor was suggesting that I not eat dairy or wheat products and started suggesting things for arthritis. I explained that it wasn't arthritis. I've told her before that I've had stage IV breast cancer and had bone mets.

Yesterday, she suggested that I go to a non-traditional doctor in town, that he wasn't a chiropractor, but he might be able to help. I looked at her and said, "If it is what I think it might be, then I don't think he can help much." She asked what I meant, and I explained that because my tumor markers are up, then it might mean it's back. "But you only had breast cancer." Yep. She said, I ONLY had breast cancer. I replied, yes, with bone metastases. She had no idea that it can spread to the bone.

Sometimes I forget that the general public doesn't know what stage IV cancer means. In fact, many people don't have the foggiest idea of what the whole routine is.

I recently read a novel written collaboratively by three women who run a quilt shop. One of the characters in the book is diagnosed with breast cancer. While she doesn't have to have chemotherapy, only radiation treatments as the cancer was caught early, these authors had her lose her hair and vomit. I just about threw the book across the room.

How can people be so uninformed? With all the women who get breast cancer, why couldn't they ask what the side effects are or do a little research on line? There's that much mystery? Radiation can make you tired. It can make you have "sunburn". It doesn't, unless you're having it on your head, make you lose your hair, and it doesn't make you vomit. I am snarling about people who, although there are tons of people getting diagnosed every day, can't seem to get it into their heads about what it means to those of us who have it.

And me? Well, I see my oncologist in Sept. At that point, I'll ask him about getting an early scan (my last PET was in November, 2008). If it is cancer again, I'll ask my doc in Connecticut for a second opinion as I REALLY don't like this 'there's nothing to do except pain relief.'

Is it my final wall? Will I be going soon to the Elysian fields myself? I don't know, but it isn't going to be tomorrow. And it won't be this year. I will someday have a final resting place, as Life has a 100% mortality rate at present....but for now, I'm here. : ) ....and maybe I'll just wear the Yellow Jersey....and the polka-dotted jersey for the Queen of the Mountain.

Oh yes..the photo is sunrise on the Rocky Mountains towards Glacier park from my mom's kitchen window in Montana.


  1. I think many breast cancer survivors try to avoid that word ... metastatic cancer.

    I am stage 4 also and am so aware of what it means.

  2. Keep your chin up, Daria! Having been out of treatment for so long makes it a bit more annoying for me when people don't understand...and it is frustrating to know that so little has come out for people who have repeat recurrences.

    However, it may just be a blip with me and I may still be's the not knowing which is such a pain...sometimes you can push it away, and sometimes it sits there staring you in the face.

  3. Can I ask a question? What are your tumor markers? Mine have risen over 50 percent. I feel like crap. Pet scan showed four areas of activity, which they've decided is not cancer after all. I'd be thrilled about all of this, except, like I said, I feel awful. The bone aches may be tamoxifen, but they are pretty awful.

    if you don't wish this to be public, you can contact me at

    if it's none of my business, tell me that you'd prefer not to share. I promise not to be offended.

  4. Oh my Debby! My tumor markers are now at 45, whereas they had been at 26.

    Make sure that you communicate to your oncologist exactly HOW you are currently feeling, and if necessary, ask for a second opinion. Some people do have tamoxifen aches, but I only have minor ones. may be something else entirely, but it also bears looking at.

    I have found over the years that we have gotten much better at seeing what's going on inside us, but we don't have the ability to understand all of what is going on.

    My areas of change too have been watched and while they don't know what they are, they are pretty sure they aren't cancer.

    Being young at diagnosis means that other changes which are natural are now being picked up on CTs, PETs and MRIs. It may actually be arthritic areas...who knows! Although I'm 49, the two courses of chemo (CAF in 1994 and Taxol in 1998) took a drastic toll on my body.

    Please keep me posted, and there isn't much which I don't mind sharing, particularly to other cancer patients.

    Many hugs, Lisa