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ejourneys's picture

Five days until I begin Chemo Cycle 2.

A mental alarm bell went off this past Thursday. First, it was time to call and reorder my anti-nausea meds, which are due to be delivered before my next infusion.

Second, my brain clicked over into Start Preparing for Battle mode. On the surface it means I'm listening to more epic music. I'm not a gamer, but at times like these I go to YouTube for the soundtracks to games like Skyrim (Jeremy Soule), Dragon Age (Inon Zur), and Mass Effect (Jack Wall).

And I start thinking of scenes like this one.

I write reminder lists. Make sure I have enough "chemo food" and other supplies ahead of time. Prepare a peanut butter sandwich the night before, in case I feel hungry during infusion. Make sure my chemo bag has whatever I might need. So far I haven't needed my blanket, hoodie, and warm socks, but they're good to have around just in case because the body can get cold during infusion. (The first time, I had registered 96 degrees when I had taken my temperature at home, several hours after chemo.) Make sure my MP3 player is fully charged, because I'll be at the cancer center for at least three hours. Bring my anti-nausea meds with me, to take once I get the go-ahead from the chemo nurse (and not before).

As much as possible, clear my schedule for the week following infusion so that I can concentrate on Nap Time. I get my Neulasta shot the day after chemo, and unlike last time I will refrain from doing errands on that day. (I've learned my lesson there.) The only other thing I've got planned is taking delivery of several lightweight, long-sleeved, button-front shirts to get me through my chemo summer.

Last night I was interviewed by doctoral candidate Jodi Sperber for her research into the intersection of social media and health, with particular focus on #bcsm (breast cancer social media). I'm a newcomer to #bcsm -- have participated in two of the community's weekly tweet chats so far -- but the hashtag search produces great information 24/7.

I also had a good meeting with the ARNP at the cancer center on Thursday, where we shared online resources. She pointed me to Up To Date. Afterward, I emailed her links to #bcsm and to:

1. Peninsula Medical, which offers a free lymphedema alert band to patients who have lymphedema or who (like me) are at risk.

2. Stanford National Breast Cancer Lymphedema Registry ("It is as important to gather this information from the patients who don't develop lymphedema as it is from those who do.") I've signed up to participate.

3. WhatNext and this site, in addition to the tons of great stuff available on the ACS main website.

4. Cancer Support Community, which includes some excellent brochures in addition to its Cancer Experience Registry.

5. Cancer Connect.

6. Breastcancer.org.

7. Very informative breast cancer blogs from Xeni Jardin at BoingBoing and Denise McCroskey at Hello Courage.

8. Patients Like Me (networking, tracking one's medical condition, quality-of-life indices).

9. A directory of healthcare tweet chats, including those related to cancer.

My blood work on Thursday showed the Neulasta kicking in. I can expect another blood draw this coming Thursday before I head to the chemo bay. In the meantime, I am busy psyching myself up for the next round.

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