Fire of Our Hope: Walking in the Park

Sunday, July 12, 2009

Walking in the Park

Well, if this (Taxol) is a walk in the park after the A/C, it must be Central Park at 3 AM on a weekend... 'cause I sure ain't having any fun, and I feel like I'm being mugged!

I did start to have a return of energy and was looking forward to what that would allow me to do without everything being a major project (like laundry -- it would be nice to be able to do two loads in one day. Like cleaning out my car. Hey, I'm not asking much!).

Then I got zapped by muscle aches. All over. Even my feet and ankles hurt, for crying out loud! Sitting and reading hurts. Knitting hurts. Walking really hurts. I got half way through the grocery store yesterday and had to fight back tears.

Still sleeping about 10-12 hours a night, but that's ok -- at least when I'm awake I can function without feeling like I'm moving through fog.

Chemo is my friend, but as I've said before and will continue to say, it sucks.

Meanwhile, I'm nervous about the results of my muga(heart)scan because I really, really need to be able to start Herceptin next week. Fairly important (critical) to prevent the cancer from returning and for my long-term prognosis. It won't take much damage to the heart muscle (from the A/C) to take Herceptin off my list for now, and that would be devastating. Keep your fingers crossed for me.

So, yeah, the fun continues.

The aches supposedly pass; the only question is when -- a day or two from now, or a month or so after the 12 weeks of Taxol is up, or sometime in between.

I want to be a strong spirit and fly through this but the truth is, it's more devastating on just about every level than I could have imagined, and it's hard, and it wears me down. The fatigue makes everything harder to deal with, from the obvious things, like pain, to the more subtle, like trying to maintain some emotional grounding. Most of the time I have my sense of humor and I know I've been lucky not to experience things worse than I have. And I'm so extremely, very grateful for those days when I wake up and feel some semblance of normalcy, where I can go to work and get up the stairs without feeling like I'm dragging a horse behind me, and still have energy leftover after work to enjoy the rest of the day. Those are the really good days! and I'm happy to have them. The rest, I remind myself, will pass... and I'll get on the other side of this.

Looks to be a beautiful day here. Think I'll pop some Tylenol and see if I can get a short walk in some where!

PM update:

Walk consisted of about 1/10th of a mile -- but I was around some flowers and took some pictures, so that was nice. The bottom of my feet hurt*, which I've learned is common, but it sure makes walking painful. If it doesn't go away soon I may have to see about something stronger than Tylenol although I've managed to avoid most scripts up to now, except for rare taking of atavan for nausea. Hate taking meds but don't like suffering, either.

*along with my back, legs, etc.

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Treatment Outline

Last chemo: Sept. 23, 2009 -- Done!! WOO HOOOO!!!!!!

Surgery, Oct. 29, lumpectomy with removal of 17 lymph nodes. Biopsy results: all negative. WOO HOOOO! again! The surgeon said I was in a group (of women with my cancer type, stage, etc.) of only 10% that comes back totally clear and negative. Happy dance!

Radiation begain Dec. 7; I had daily (weekday) treatments for 38 treatments, with a few days off for holidays and when my mom died.

Herceptin continued until I had "minor heart impairment." I'm on a beta blocker and doing well.

I'm on an estrogen-blocking med for five years. Update, 2015: I've been put on it for an additional five years.

FAQ's

I seem to get some questions often, so I'm going to address a few of them here. I'll update from time to time, too. Unless you read otherwise in a post or email, these things hold true:

1. I'm still working and plan to do so throughout treatment. My oncologist, his staff, my boss, and I all see no reason I can't continue, although I may have to make schedule adjustments from time to time. I have bills to pay so I don't really have the option of quitting anyway.

2. Mom is holding her own. I have to put my own health first right now but I'm going to do everything I can to help her. And she's doing what she can to help herself and to help me as well. We're working as a team, even if it's a cancer-ridden, chemo-taking, sometimes bumbling one!

3. As I've shared with most of you, and I want to keep emphasizing, don't feel like you have to wait to hear from me. In fact, sometimes it helps when you take the initiative, because I may not always have the energy to do such a simple thing myself. Call or email any time -- you can't disturb me -- if I'm too tired or otherwise unavailable, my cell ringer is off; and I answer email as I can and know you understand if it's not always in a timely manner.

4. My last A/C treatment was June 17. Taxol has begun and in spite of what's normal, for me it's been harder than the A/C. Lots of immediate, significant side effects that need frequent adjustments to control. I had to drop one week of Taxol and am on reduced doses for the duration of treatments because of the severe neuropathy I'm getting. Herceptin began with the taxol and continues for a year; surgery sometime in the fall. Radiation, maybe.

5. I was told not to expect hair growth until after the Taxol is over, but I'm getting white (! my hair was only partly gray when this started!) and spikey regrowth right now (late August). It may or may not fall out as the Taxol continues, but whatever! It's been an amusing part of the journey for me to go bald, see funny regrowth, etc. I still don't expect any real hair length until next spring. Going bald has it's own freedom, and I love the feeling of wind on my scalp, but I can't say I feel like bald is "beautiful" in my case!

6. This isn't an FAQ, but as a reminder: I prefer you do not share this blog with others unless you ask me first. I probably won't mind your sharing, but I'd rather be asked first. I consider this a personal journey, and while it's no secret that I'm dealing with cancer, I prefer to chose who to share details with. Thank you for understanding.

7. For those asking about my photos, I mostly post them on my nature blog. However, some of the photos here aren't mine and I don't want to take credit for them. Ask if you're curious -- I haven't been taking the time to tag what's mine and what isn't. If it's really good, it probably isn't mine! :)

8. Details on my diagnosis: localized, no lymph nodes involved, HER2+, ER slightly+, PR- (those last three have to do with cancer receptors -- the positives mean more treatment options, so are a good thing in their own way), IDC, stage IIa, I'm probably forgetting a piece but most of this won't mean much to most anyway and those are the highlights.

9. I'm not afraid of the cancer. Not too thrilled about the side effects of the chemo, but I'm not afraid of the cancer! My prognosis is excellent; I have confidence that I will beat this and have an incredible circle of support: oncologist, staff, counselors, support groups, family, friends, even friends of friends... (listed in no particular order, as all of you are prime!)... thanks to all of you, I will get through this! Hugs to every one of you!

Fire of Our Hope

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