Think Pink or Pink Stinks?

Some of the women I know who have stage IV breast cancer are very happy that this month is over. They don't turn on their televisions for the entire month of October. They want to go back to watching Survivor. They want to read magazines again.

You may think I'm joking or exaggerating. I'm telling the truth. I picked up a Reader's Digest in the lunch room at work today, and flipped through it.

There was an article on the new cancer cures. The lead paragraph was about a woman with advanced breast cancer who was given 6 months to live. Ten years later she's still alive, due to the miracle drug Herceptin.

Herceptin is a drug that works, for a while, for a subset of women with breast cancer, and it does not cure them. The implication of the article, however, is that the woman has been "cured".

And then a big, glossy, four-page, advertisement for Arimidex. A big, pink, marketing campaign for a drug that I just (presumably) failed.

Whatever. It's over.

I think I understand the importance of fundraising. Also... I don't think it would really behoove the general populous to view breast cancer as an automatic death sentence. I think that would generate a level of fear that would KEEP people from having regular screenings.

Still -- the big pink hope party got very old, very quickly, for me this year.

I'm glad it's over.

What will you do with your extra hour?

It's a nice Sunday morning. Eric is handsome and the coffee is good. I'm piddling around with my various computer projects -- silly webpages and backing up files for a rebuild -- while Eric reads the paper. I'll work on my mosaics project today. I already don't love this project. Seriously... what am I going to do with a turquoise framed mirror? But it's the process, you know. Practice for the Major Project (and peak of the mosaic experience) that I'm planning.

I am intermittedly spacey and tired and pretty okay. I'm hoping that this is the butt-end of the decadron pummeling me, and that shortly (within a day or two?) I will feel better.

Even in my crankiness, I crack myself up. That line about the powder puff santeen yesterday. It's so bitter, and so funny to me. I made myself laugh outloud when I read it this morning.

I will spend my bonus hour today resting quietly, thank you.

Cancer is boring.

I'm tired of talking about cancer. I guess I'm more tired of actually having it than talking about it, but the general aura surrounding all of this? Tired.

I'm glad I went for a second opinion yesterday. There were no surprises. There were no specific recommendations for a protocol. Folks want information about my disease. I give the information I have. There are no answers in regard to life expectancy.

I'll be continuing with radiation therapy next week. I've completed six of ten treatments. I'll meet with my oncologist approximately one week after completion of my radiation treatments. Here's what's on the table for discussion:

1. Can I be said to have failed hormonal therapy? There are indications that hormonal therapy has not been given an adequate trial. If I cannot be said to have failed hormonal therapy, what steps need to be taken to insure an adequate trial of hormonal therapy?

2. If I have failed hormonal therapy, what is the recommended chemotherapy protocol? What are the expected side effects? What are the risks in postponing chemotherapy?

3. What drugs should I take to strengthen my bones? My onocologist had not recommended the bone-strengthening class of drugs, as my metastasis was not to a weight-bearing area. Now it is clearly indicated. Ultimately, with bone mets progression, I will have more fractures, regardless of treatment.

That's it. I'm tired. I could have the best oncologist on the eastern seaboard, and this disease would kill me. I'm not excited by chemotherapy protocols. All of it's based on statistics, and if you want to hang your hopes on statistics, please remember that all chemotherapies given to all breast cancer groups yield a difference in life expectancy of months.

My cancer treatment is palliative in nature. That's a word that has been humming through my brain for the last five months, and I think it's an important word for people to know. Palliative means that it's a treatment given to relieve the symptoms and reduce the suffering caused by cancer. It is not curative, and does not have significant effect on life expectancy.

I am not interested in Cousin Alicia, who was told that she had six months to live EIGHTEEN YEARS AGO. I don't care that a 70 year old woman has been plugging away for six years with mets to her lungs. Yes, I know -- you could get hit by a truck tomorrow.

I've been hit by a truck. We can stop talking about it now.

There are NOT curative treatments around the corner. There's nothing coming down the pipeline to save me. My advice to 3-day WalkForACure types: If you laid all of the pink ribbons in a line, end to end, they would circle the globe twenty times AND you'd have enough powder puff sateen to hang yourselves.

Really. Cancer is boring.

What I want -- and the only goal of treatment -- is to feel good. When I feel good, my life is good, and Eric and I have a very nice time walking through our days together. I'm so happy to have nice folks to walk with us. I know I sound cranky. I don't want to be cranky. I'm just tired.

Off We Go

Eric danced and danced last night. He ran into a friend of 24 years, and spent the night dancing and talking and having a good time -- front left (as always) and sitting on the stage between sets. Yay!

I spent the evening with Janis -- eating taqueria food and also have a good time.

We slept until a quarter to 9:00. Unheard of in this household. Now we're getting ready to go to Mama's to break the fast, although we considered La Note, as well.

Then we're off to Kaiser. I need to pick up some papers. Eric needs to have blood drawn. Then we're going to make copies, and head off to Sacramento.

It's all a mix of the normal and the absolutely freaky. I guess there's just life with Eric, and what that life winds through.

There are people in the world who could not, everever, dance and dance and sit on the edge of the stage. And there are people in the world who could not, everever, laugh at a taqueria as I did last night. It's not their circumstances. Or, if it's their circumstances, it's a circumstance so deeply rooted in their personality that it should likely be considered biology.

I wouldn't trade with them, even now.

Tired Ouchy Stiff Blech

Not long ago, Eric and I managed to magically score tickets to a concert that was virtually impossible to get into -- Phil & Friends at Bimbo's. It's unheard of. A 600 person theater. Three hundred pairs. Amazing.

The concert is tonight. I will not be attending. Eric must go... he has to go for both of us. I just can't believe that I won't be there (although I absolutely must have Eric there).

It's a rare circumstance that can keep me away. I will be home tonight. I believe Janis is coming over, which is a pleasure in itself... and Eric will feel better knowing that she's here.

Tomorrow Eric and I will be making our way to Sacramento, to seek a second opinion at UC Davis. I believe their opinion will be that I have stage IV breast cancer, and that it's gonna kill me. BUT... they'll recommend a chemo protocol or whatever. It's a good thing to do. The second opinon will be arriving before the first in this case, as my oncologist has yet to make his recommendations.

After this weekend we have our November Weekend Madness Celebration. We'll be away from home for four weekends in a row.

Weekend 1: I'm a finalist in the Craps Tournament again. Remember, I was 2004's highest ranking female craps player. I now have my chance to defend that title for 2005. Frankly, I didn't think I'd make the cut, as I didn't do strikingly well in the feeder tourney. In any case, it's 100% comped, and even as slow moving as I am, I can't wait to go play.

Weekend 2: Eric and I are staying at a cabin in Yosemite over this three day weekend.

Weekends 3 and 4: Cruise to Mexico.

And then there's December.

Off to work now.

Rain. Feh.

Oh, you know... just kvetching. My radiation was cancelled two days in a row this week -- a malfunctioning machine, and I suppose that's a good reason to cancel. This means that my treatment is further delayed. This should be my last week. As it stands now, if all goes smoothly going forward, I won't be done with rads until the end of NEXT week.

When they set up your schedule it's impressed upon you how it's all a very scientific protocol -- how you must not miss a session. It's all perfectly orchestrated to kick cancer's ass. But in reality, when the machine's down, or there's a three-day weekend, cancer can wait.

In the interim I feel as though I am without treatment. Well -- I am without effective treatment. So cancer rages and roars in my blood and bones and lymphs and lungs. Cancer's doing a systemic limbo dance, and security's walked away from the entrances... and Sean and I aren't even going to show up with fake badges to pretend like we're in charge.

And so today, booked for an alternative machine, I need to show up early (middle of my work day), and wait while aaaaaalll those sick people in front of my have their turn. And then I have to go back to work. And then I'm staying late for a union meeting. And then I'll come home.

I guess it doesn't sound so bad. Just tired. Not loving the rain. Not loving this experience. Not feeling those women who say that cancer is the best thing that ever happened to them. Still loving Eric. Still glad the pain is much, much, more manageable. Still glad for the distraction of a (relatively) easy job (for now... things are backing up).

I told one of my co-workers -- a nurse with whom I have limited work contact, although she'd like to dominate my time -- that I have cancer yesterday. Without skipping a beat she let me know that they had already had several secretaries die from cancer there, and they were very good about it.

Good morning, America!

When progression is not progress.

I spoke with my oncologist regarding my most recent ct scans. There's progression -- more cancer in my sternum, more cancer in my axillary lymph nodes, new and major progression in my clavicle, which caused the bone to fracture.

My oncologist says that the problem is the pain. If it weren't for the pain, he says it's "not terrible".

Except that now he believes it's time to talk about chemotherapy. The problem with chemotherapy in this context, is that once you start it, you essentially stay on it until you're too sick to function, or it stops working. And when it stops working, you try another one. And when you run out of other ones, you die. And the truth is that in the end, chemotherapy extends peoples lives by months.

I wanted to be one of the "lucky" women, who has many years of good QOL (quality of life) with hormonal treatments. That's not the truth, though. It's just... not.

I eat arroz con pollo with Eric. I make plans for Camp Martha... think about mosaics tomorrow... check my auctions on Ebay. I wonder how many tickets to order for Carbaret.

I think about how, at twenty-three, I could not have imagined how rich my life would be. I think about how Eric made it so. I miss my life, already, and it hardly seems right. But it's just a moment, and I know that in the end that Eric and I will both bear a little more than we think we can bear.

Foggy

Having a slow, tired, foggy, weekend. I've put together some pictures of my mosaics. The don't warrant a web page, of course -- just needed an easy project to keep me directed today.

Remember, I'm a novice!

http://www.ohmartha.com/mosaics

Back to work tomorrow.

Today is better than a week ago today.

The changes that occur from week to week are an amazement to me.

One week ago I was in so much pain! I was very uncomfortable... sleepless and paranoid from narcotics... emotionally spent. A week ago today, Janis came for a brief visit, and I couldn't really speak with her, and then Jane came in the afternoon (with her striking ability to flow and be present in the midst of turmoil) and she could probably tell you what a mess I was.

And last night? A lovely dinner at Luana & Yoko's w/ Eric and Tom. It was so nice and normal and yummy. Luana made beef stew, and it was just the perfect dish. Beautiful, tasty, appetizers that I will be serving myself soon, and a fruity fresh cocktail.... long simmered beef stew over rice, with corn pudding casserole (by complete coincidence, the very recipe that Eric uses, which he got from his mother)! And cheesecake with maserated fruit for dessert.

And I was able to enjoy all of it.

The wheel of fortune turns.

I think it's all such a testament to the resiliance of human beings. One minute you're howling at the moon in pain, and devastated that you're dying -- the next you're laughing with friends and eating ecstaticallly -- and both experiences are authentic.

Today I'm tired. The cost of doing fun business last night is that today it's all over early.

I have no idea what's waiting around the corner of the next fifteen minute period. Let's hope there are no spontaneously breaking bones.

TGIF

I'm tired this morning. Need to keep reminding myself that, yes, radiation does cause fatigue. I noticed today for the first time that the area of radiation (rather larger than one would expect) is starting to turn pink. I apply pure aloe vera gel three times a day and hope for the best.

My chest is a constellation of blue tattoed dots from old radiation and new radiation, and a criss cross of thick blue ink lines. I'm not supposed to wash them away, but they smear and streak. So there's a general blue cast, and smudging and general messiness... and dots. And pink. And ink on the inside of my clothing.

We're going to a dinner party tonight at Luana & Yoko's! This makes me happy. Such good company, and the food will be yummy, and it's so nice to be invited!

Beyond that... lying low this weekend. Put the cabosh on our fun plans: we have completely kick ass seats to a MOE/Governtment Mule concert at the Warfield for Saturday. I think they might be lower loge? If not... close. It's going to be a great show, but we won't be there.

I am not one iota closer to having any information about my continuing cancer treatment. I do not know what it means for me to have failed hormonals. Communication with my oncologist remains poor. He has made some small effort. He has not made enough.

If it were the beginning of Breast Cancer Awareness Month rather than the end, I would garner my waning energies to produce a new logo for the cause. I can see it in my mind. No one must steal my idea, as I will render it when I can: a pastel pink skull and crossbones, with a pink a ribbon on it's head. Will Melissa wear it? It has a rock and roll spirit, I think.