Fire of Our Hope: Bedtime for Bonzo

Tuesday, May 12, 2009

Bedtime for Bonzo

Bonzo being me.

I was in bed and asleep by 6 PM yesterday -- got up at 7:30 (AM, the next day, that is) (with few wake-ups during the night), went to work for an hour, then gave it up and came back for more sleep. This is only slightly longer than the 13 hours I slept one night during my first treatment, so not a huge surprise. I probably could have made it through work but decided not to be a martyr. I'd rather know I'm helping my body, and the work will get made up.

The bedtime, hours before sunset, reminds me of the Robert Louis Stevenson poem, "Bed in Summer," although unlike the child in the poem, I didn't find it hard at all to go to bed by day!

I am seeing some progress; I got out and was a little active this afternoon (if you count taking mom to the grocery store "active"). This is good! An early bedtime predicted for tonight, but still and all, I'm not complaining. Except for fatigue I'm feeling good!

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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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