7/21/10

Glowing, Day... umm, Either 7 or 9, Depending

So this was my seventh day of radiation, if you count only the treatment days, or Day 9 if you count the weekends (I don't get treatments on weekends).

My bone pain is getting worse instead of better, which they were not expecting.

I'm having nausea and intestinal problems, which they were not expecting. Theoretically the radiation is designed to be within tolerance levels for the intestines. They've never had someone with tumors in that spot have those problems before.

I'm having weird (visible) muscle tics during the actual radiation process, which is just plain bizarre, they've never even heard of that happening before. It doesn't hurt, it just is very, very strange.

I have a giant rash on my arm, which is a mystery... except that maybe I'm allergic to the Faslodex (the once-a-month injection they are giving me for the cancer, the last of the endocrine therapy options). I'm having a lot of problems from the Faslodex, actually - the rashes, the headaches, probably the nausea and possibly the intestinal problems, sore throat, cough, weakness, depression, joint pain, a worsening of allergy issues. And oh, yeah, the return of Depression, my favorite. As usual, everyone keeps telling me that they've never had a patient who has had these problems with the medication before.

Dr. Bouncy, very stern, informs me that the cancer is very aggressive (really? hadn't noticed) and he wants me to start chemo as soon as the radiation treatment is over. The Faslodex can take up to 6 months to get to therapeutic levels in the body, and without specifically saying so, the gist is that he doesn't feel that I have 6 months to Wait And See.

He uses emotional blackmail to push the chemo option, waving impending death and my son at me (gee, I hadn't thought of that...), in hopes that this will bring me to see reason.

Because, you know, the other medications** are working so much as he expected that OF COURSE I should trust that somehow the chemo will work as he wishes it would. Even though the chemo treatments generally don't work as well or extend your life as the endocrine therapies can, and have so many more potentially horrific side effects.

It's not that he doesn't care. He does, clearly. But he's a straight standards-of-care guy, so once the endocrine options are over with, chemo is all he's got left to offer. And he's an optimist by nature, so he's hoping for a miracle of sorts - not the sort of miracle where I'm cured, but the sort of miracle by which I eke out another year or two, which he'd count as a success, as it would get me to the top end of the 'average' lifespan for someone diagnosed with Stage IV BC.

He thinks in terms of the average patient, or even in terms of the average unlucky/sensitive patient, in spite of my body's baffling refusal to react like one up to this point. That's not his fault - he hasn't been living with my body for the last 50 years, like I have. I'm disappointed, I'm upset, I'm scared... but I'm not the least bit surprised. This is all pretty much par for the course.

I plan to hold out until the scan after the radiation theoretically will have pretty much done whatever it's going to do - about two weeks after the last treatment, I think. The scan and how I feel will give me a bit more information to work with, and then I'll have some very tough decisions to make. Again. I have few possible paths, and all of them lead into dark, blind alleys... no way to know how long any of them might be, or what might lurk within.

Except that somewhere in all of them, inevitably, There Be Monsters.


**Like the Aromatase Inhibitors that should have been relatively symptom-free and should have given me a couple years progression-free (instead of a couple months), and the Faslodex (which all their other patients have had no problems with)...

8 comments:

Delighted Hands said...

You knew this road was not for the weak of heart. Sending hug. Hope there is relief soon.

Laughingrat said...

I'm really sorry, Eileen. It must be frightening as well as uncomfortable, and frustrating to not be "seen" by your healthcare professional. It's nice that his good intentions still come through, but it would also be good if he'd listen more and be more flexible.

Nancy K. said...

Well, CRAP!
No wonder you're depressed. How could you not be?

I'm praying that Dr. Bouncy can find something that gives you relief AND more time...

You're being very strong and brave ~ there should be some kind of reward (in THIS life) for that!

Sending gentle hugs and lots of prayers.

Roberta said...

No matter what Dr. Bouncy says...you have to live out the rest of this time in your body. Make this decision purposefully. I know this is obvious...but chemo is a miserable bitch and from my first round...not something you want on top of what you already have. Time is relative, depending on how you feel versus how long you feel completely miserable. Only you know how much you can take. And how much those around you can handle.
I'm sorry if this is harsh. Just coming from this side of the fence, darling.
I know the urge to start doing everything you can. One of my favorite doc's calls it an act of desperation. That is exactly what it feels like.
Especially because no one else can go with us.
Love you.

The Violet Hoarder said...

Tell me all about the most wonderful day of your life.

Labeled Disabled said...

http://distractible.org/2010/07/14/a-letter-to-patients-with-chronic-disease/

Thought this might help a little... It's an interesting read even for those of us who aren't chronically ill.

mrspao said...

Hug xxxx You have great courage, my friend, to live by what you believe is right and you are cared for by so many.

Celticsprite said...

Roberta is right, you have to do what is right for you with the information you have. You know that. You know what you are strong enough to do. I of course would love to see you get better, and pray for a miracle. If you don't feel you are being listened to, then stay seated in his office until you are satisfied that you have been heard. I had to do that for my wrist, and had to explain just how much I do, and lift, and push so I could protect myself. I told hm with my swollen wrist that he hadn't listened to me. After that, he did listen each time, and we were able to work together. I would now recommend him. I know you have a relationship with Dr. Bouncy, but he has to understand you. You always come with facts.