Observation

So apparently Oscar doesn't like children's sugar-free, alcohol-free, colourless, bubble-gum-flavoured, no-name antihistamine. I can't imagine why not.

How Are You Feeling?

Pretty much everyone--everyone--asks me, when they see me, "How are you feeling?" I actually appreciate the concern. A lot.

It kind of feels like a let-down to tell them, as I have been because it's true, "Just fine, actually, thanks." No--really it isn't true. I spend most winters sneezing and coughing and hacking around a sore throat, with my hands chapped and raw from the sanitising solution at Starbucks. I don't really know how I've escaped all that this winter, but if I were going to be really honest, I should have been going around saying, "I feel great, thanks."

(Nobody gets that enthusiastic about anything in New England, though.)

Anyway, it might come as something of a relief to all involved that, having gone through most of the cancer treatments with shamelessly few effects, I can now say in answer to the "How are you?" question, "Kind of horrible, actually."

It would appear that the cold/flu thing I've been dodging all winter has finally caught up with me. Meanwhile, tamoxifen seems to be going pretty well, except that it is refusing to allow me to sleep. I don't think I've had a full night of sleep since I started taking it. Which might explain why the cold/flu thing caught up with me, I guess. Also hot flashes. Those are weird, people. I really hope I don't have them (and sleeplessness) for the ensuing five years I'm on this stuff . . .

But otherwise? I'm feeling great, thanks.

Of Blood Clots and Financial Haemorhage

I saw the doctor last week. She said I'm so young, my chances of either blood clots or uterine cancer are practically nil. I didn't even have to look like a hypochondriac by asking about them . . . she offered this information of her own volition. That was nice . . .

So . . . I've been on Tamoxifen for six days. Six days out of five years? Okay--I'd better not start thinking like that.

I found out in the same week that my insurance has decided against covering my Oncotype-DX test. Which is disappointing. I'm glad that the test (and some prodding from the Milk Guy, my mother, and Pastor Val) enabled me to decide not to have chemo. I'm less glad that the people conducting it seemed to have told me my insurance would pay for it when it was evidently not a foregone conclusion.

Still, it was all put in perspective when the insurance statement came in for my radiation treatments. Having met and exceeded my out-of-pocket expenses, my insurance is covering these. The December treatments alone (not even a full month) exceeded $18,000. Good grief! If I had to pay that, I'd be taking out a mortgage on my life right now . . . !

Whatever Could Be Next?

Tamoxifen. That's what.

I've been kind of nervous the last few months about Tamoxifen. Way more nervous than I was about radiation--which I wasn't that nervous about, though. Mostly I'm nervous about going into early menopause. I'm not sure why. I don't plan to have children and I am not a terrific fan of The Cycle, so you would think I might kind of be looking forward to this prospective side effect or something.

But I guess I feel like I will be aging my body before its time. While I don't consider 50 to be old, exactly, I do consider myself to be not-50, and I don't want my body to be all acting like it's 50 when it isn't. Also, one time I was on the Pill to treat my acne, and it didn't help that at all, but it did make me very sick. I'm now kind of afraid that anything that messes with my hormones will mess with my entire body.

So I voicemailed the Nurse Practitioner. I haven't seen her in a long time and I like her, and I thought maybe I could chat to her about some of my concerns. I said, "I'm a little nervous about Tamoxifen, and I am planning on taking it, but I wondered if I could maybe ask you a few questions about it."

She emailed me back: "Attached are a couple of handouts I use in my high risk clinic that I developed on Tamoxifen..see if they answer your questions...if not let me know and we'll see what else we can come up with..."

I was okay with this until I read them and learned that I could also develop blood clots and deep vein thrombosis. Who knew? After that I thought, "This was probably not the best approach for dealing with someone who has just admitted they're nervous about the prospect to begin with."

Then, a few weeks later I was in the bank changing tip change into bills for Starbucks and the Bank Ladies asked me how I was doing. "I'm doing okay," I said. "I'm almost done with radiation. But I have to start Tamoxifen soon. I'm actually a little more nervous about that."

"Yeah," said a Bank Lady seriously. "My mother had to take that. And she did get uterine cancer from it, but the great thing is that they monitor you all the time, so they can catch stuff like that right away."

?!

If we didn't have the right to free speech, I would not be able to write this blog, but sometimes I think that people should be prevented from talking without a license.

All Fun and Games

I'm kind of a sore loser. When I was growing up, I didn't like games of strategy because I'm just not that strategic of a thinker. And I didn't like games of chance because I'm not that lucky. Once I got old enough to opt out, when my family would sit down to a game, I'd camp out in the same room with a book and make more or less helpful or snide comments to the players in the background. Now that there are team games like Cranium or Pictionary, I'm more likely to play, maybe because they involve teams so if I lose there is an entire group of people who goes down with me.

That's a nice realisation for a Wednesday night . . .

All the same, when we had group projects in eighth grade social studies class, I liked inventing board games. I'm not sure someone who dislikes games is capable of making good ones, but I am here to tell you that, nevertheless, I have come up with a new game. It is great, because it combines both strategy and chance. Get ready for next Christmas, folks, and start saving now. It's pretty expensive. It is called:

Cancer: The Board Game

The object of the game is to move from cancer diagnosis through treatment to being cancer-free, first, and without dying. The "Start" block is a doctor's office for a routine check-up, and depending on a roll of the dice, you can end up with a clean bill of health, or with a complication which you have to get checked out. If you get a clean bill of health, you're pretty much out of the game. I haven't figured out if that means you won or you lost, since the game is called Cancer: The Board Game, and since you pretty much haven't completed any of the objectives. Anyway, whatever. Go get yourself a book and make snide comments to those of us who get diagnosed with cancer in this game. (Note: that part is not very true-to-life. No one has yet made any snide comments about my real diagnosis. Also not very true-to-life is the idea that cancer patients are out to race each other to a positive outcome. I think this is something that is Not Done. But we're talking retail profit here. No one wants to buy a game where all you do is help each other. Do they?)

Everybody else who rolls a complication is guaranteed to get a cancer diagnosis, because this is Cancer: The Board Game, and not Anurysm: The Card Game or Deep Vein Thrombosis Solitaire or anything like that. Various things happen based on dice rolls, and then finally you get to treatment stage where you encounter "Treatment Cards." This is where actual thinking might happen. If you feel like it.

Say you roll the dice and you land on a space that says, "You have stage 1, grade 2 cancer. You may opt for the traditional treatment [which entails going down a long and circuitous chemotherapy track that has all sorts of pitfalls sending you back five spaces or something] or draw a Treatment Card." You know that if you draw a Treatment Card, you might mis-roll later and end up back in that very chemotherapy trail you were hoping to avoid, but if you don't, you'll be that much closer to the end of the game and beating out your fellow cancer-sufferers.

So you draw a Treatment Card and it says, "You are going to be treated with radiation and hormone therapy. Go to Radiation." You move your playing piece to the Radiation section and it says, "You will be here for six weeks. Every day heterosexual members of the opposite sex who are your age or younger will radiate a part of your body you do not wish them to see. Lose six turns." (I haven't figured what happens when everybody is losing multiple turns at once . . . )

Then after that you move your piece to Hormone Therapy and it says, "You are taking Tamoxifen. Side effects are usually mild and treatable, but may include . . . [yeah, actually, I don't want to write them here. You can click here if you really want to know]. Lose a turn and go back two spaces."

I'll let you know how the game ends up. These are just examples of the hosts of diagnoses, moves, decisions you can encounter in this fabulous game. Don't you want to play?

Balking

When I saw my Oncologist a week ago, she gave me a choice: chemo or randomisation (wherein I would either get chemo anyway, or I wouldn't, but I'd have no choice in the matter). I was feeling tired and stressed and sort of resigned, so I thought I was going to go for the chemo. I didn't feel like fighting with my very pro-chemo doctor, and I didn't feel like deciding anything. I didn't feel like talking to my Second Opinion Doctor, either. But I did.

"Great!" she said. "You have a low recurrence score! You'll do great in the protocol!"

But I don't like the idea of being randomised. Waiting some more, just to find out I'm being assigned something by chance, doesn't really thrill me. No one was suggesting I could just opt out of chemo altogether. My Oncologist is a treatment-conservative (which, for some reason, translates into very un-conservative treatment). My Second-Opinion Doctor is a researcher. Why would they offer me the "third way," I guess?

Then the People Closest to Me started asking questions, which basically boiled down to "How on earth is pumping extra toxins into your body when you only have a 9% risk of recurrence actually going to help you?" and "Why don't you just refuse the chemo?"

Oh. I can do that?

I understand that my cancer may come back. And maybe it will be worse. And maybe I'll have to have chemo then. But maybe it would even with the poison. And maybe I'd go into menopause before I'm forty. And maybe I wouldn't be able to work at Starbucks because my immune system would be compromised and working there is pretty much like working in a preschool with how everybody gets sick in the winter. And maybe the long-term effects would be such that years from now I'd be regretting the treatment more than the recurrence of the disease.

I kind of feel like Daniel and his friends when they asked the Babylonian steward to let them be vegetarians. Maybe someone should do research on the hormone-therapy/radiation/prayer course of treatment.

Life's Little Injustices

I'm not really too sure what I think about birth control. I mean I think it's okay with God, but there are some of His people who feel pretty strongly that it isn't, and so sometimes I feel a little insecure in my position that, were I married and were my husband of the same mind-set about this, I would rather adopt children than bear them myself. This has to do with personal inclination as well as some beliefs about over-population and taking care of (widows and) orphans.

One time, however, I was on birth-control pills for another health issue (because my skin is really appallingly flaw-prone, if you must know), and it didn't help anything, and while not helping anything, they also made me dreadfully ill. So I always thought the whole preventing-childbirth thing, should it ever become a live issue in my life, might be kind of a hassle for me as well as being a source of moral confusion.

Given all of these details you never asked for, you would think I might be secretly relieved that chemotherapy is likely to reduce my ability to have children. That way, if I ever do get married, well--maybe I won't have to be as intentional about not having kids.

I'm nothing if not complex and contrary, however. Although my feelings about all these issues have been as delineated above for years, and although I feel exactly the same about them as I write them, I also feel inexplicably disheartened and a little angry that the option is potentially about to be removed from me. I don't want to be "damaged," I guess. I want to be whole, and be able to make these decisions on an equal footing with other people who make them all the time.

And here's the other thing that's ticking me off about the cancer I don't even have anymore: I'm pretty much going to be paying rent on my life for the rest of it. Here's what I mean: For the next year I will be undergoing various significant treatments to reduce my risk of cancer. For the next five years I will be on a hormone suppressant to further reduce my risk of recurrence of specifically hormone-related cancers like the one I just had. But from now until I die or Jesus comes back, I'll have to have check-ups on this area of my body at least twice a year. These aren't simple physicals, and they aren't cheap. I get to pay someone bi-annually to make sure I'm not going to die. I kind of resent this.

Huh. Happy Thanksgiving, eh?

Let's see what I can come up with tomorrow.

Niece

On Monday I went to see my counselor, as I do, and I told her my brother and sister-in-law and my niece-I-hadn't-met-yet were coming out this week. "Interesting," she said. "I wonder how that will affect you." She said this in the aftermath of my revelation that chemotherapy is now almost a certainty for me, and in consideration of the fact that such treatment is often damaging to the reproductive system. "I know you said you've never been that interested in having kids," she said. "I wonder if that will change when you meet your niece, though, and how you'll feel about it in light of the impending chemo."

The next day I hied myself to Boston to spend some time with Dave and Lu and Hannah there before we all went back to my place. They were staying in a hotel because of a conference Lu had just been at. As my brother let me in the door of their room, Hannah was bawling her head off. I thought about what my counselor had thought. Second thoughts about having kids? Hmmm . . . let me check . . . nope!

My assessment remained constant even after Hannah proceeded to revert to her unbelievably adorable self for the rest of the next two days. I love kids. They generally like me, too--this niece of mine warmed right up, in any event. But I'm quite content not to bear my own. On the other hand, it has been a lot of fun getting to know Hannah, even if briefly. I've been reinforcing good habits.
And teaching her new ones.
Oh yeah. Being an aunt is pretty good.

Coin Toss

After all that, this is not an allegory post. (Just consider yourself warned, for when I spring one on you.)

Today I went to see the medical oncologist. I have a belated infection at the surgery site. Oh yes I do. Better late than never, I guess. (?) Also, possibly even less delightful, was the copay for the prescription I had to buy to get rid of said infection. But yeah, I'd like to get rid of it. That wasn't why I went to see the doctor, though. I went to see her because she scheduled me to, so she could tell me the results of the Oncotype-DX.

Wouldn't you just know it. I'm in the middle category. This means I can a) bite the bullet and decide to have chemo and Tamoxifen or I can b) become a lab rat and let them put me in a random process which, at the equivalent of the flip of a coin, will allocate me to a group that is treated as above, or a group that is only given Tamoxifen. (Radiation therapy is a given in either case.) Then they will use the data from my ensuing life--what treatment I had and whether I ever get any kind of cancer again or not--to decide how to treat other patients, years from now.

There isn't a lot of data on this stuff for women my age. It would be very heroic of me to decide to become a lab rat. But it turns out I don't think I'm that heroic. I am a little perplexed about the numbers the doctor showed me, as compared to the ones I was quoted as needing to fall below. So I'm going to go ahead and phone my Second Opinion Doctor tomorrow, just to confirm. But, all Opinions being equal, I think I'm going to go for the chemo. I already pretty much have a wig picked out. (Did you think I said, "I already pretty much wigged out"? 'Cause I did that, too.)

But boy. Will those Starbucks customers be confused.

PG-13, Because of TMI

The information in this post is not for the squeamish . . . or for those who don't really want to know. But I just thought I'd put it out there:

1. The radioactive blue dye? Makes everything that comes out for a day or so afterwards, radioactive and blue. Looks like toilet cleaner. Doubt it has the same effect.

2. Percocet aftertaste is like plastic. The inside of my mouth has tasted like the inside of a balloon for days.

3. Percocet aftereffect is . . . to keep the radioactive blue stuff at a minimum. That's why I also had to buy something called "Stool Softener." Lovely.

4. For someone who sleeps best on their stomach or right side, the whole sleeping thing this week has been near-torture. Apart from the Percocet. (Actually, now I'm on Tylenol and herbal sleep aids, and that worked pretty well last night.)

5. I always wanted to be this size. Just didn't want it to hurt quite so much. Or be quite so lopsided.