Category: The Cielem’el Survival & Growth Journal

I called Sutter this morning and told them I’m not going to do the clinical trial. I just couldn’t stomach the idea of being randomly selected for chemo when I wouldn’t have done it, or randomly selected not to have chemo when I would have. I also called the place that does the onco dx test to make sure it’s […]

Holy cow. So my MUGA was good and the FISH wasn’t positive, and today Dr. Lombardi told us that I don’t necessarily have to go through chemo! He’s issuing another test on the surgery tissue, an oncotype. This is apparently a very expensive test (I hope my insurance is really good and not just ok), but it tests a panel […]

morning Sad, my last pre-chemo regular full work day at home. It’s a beautiful day here though, 70 degrees and perfect. A huge jackrabbit was hanging out in the yard, and Mizzou was ready to leap through the office window screen to catch it when the thing finally moved out of sight. They have such HUGE ears! What a great […]

Man, what a difficult day. I can’t seem to do anything efficiently anymore. I had a document on the cusp of being ready to go out this morning, but then finishing up the editing took me way longer than it should have, and I had all kinds of problems with google mail for the send because I was trying to […]

Wow, I was so ridiculously tired today. Then again, I only slept a couple hours last night, maybe three if you stretch the definition of “sleeping.” I gave up trying to sleep at 1:30AM, and didn’t bother going back to bed until almost 5AM because there was just no point in trying. I had three factors working against me last […]

I am such an idiot. I meet so many people at these things, you know, and I have a terrible memory to boot, which is not good when you’re at the airport to fly home and no one has their name badges on anymore. You can guess where this story is going, eh? So I’m at O’Hare with three hours […]

7AM Interesting realization talking with my old buddy Phil. He basically commented that I look more serene than I did at the Winter Meeting in January and I thought about it a moment and realized that, well, since I can’t travel again for eight or nine months and I’ll be living at Mark’s and my life is pretty much dictated […]

Ah, United. Nothing like paying hundreds of dollars (or expensing it) to be treated like disobedient cattle. Our pilots are cranky. Bad weather, justifying our soon to be late arrival. I read not long ago that United has a 40% on-time performance record. Meaning, 60% of the time, you can plan on being late. Granted, gate scheduling and part placement […]

Interesting. The number 40 is big in historical texts as a important period of time of passage, so it’s interesting that today was day #40 for me. I called my parents today. I was nervous about the conversation we needed to have, and I actually left a voicemail for my brother right before I called them to warn him that […]

Ironic. I was accidentally an hour early for my dentist appt this morning, and since I live 20 minutes away it didn’t make sense to drive home and back, so I went and sat and did my Runes journal and thought the last of this decision through. And now I’m convinced that staying with Mark in Sacramento for my chemo […]

Around and around I go. I’m almost there, but nobody knows. I talked for over an hour today with this woman, Carol, who’s basically a cancer case worker. I think she told me she’s an “Oncology Patient Navigator,” how’s that for a job title? She didn’t really have any information I haven’t already read in my own research in terms […]

Same stuff, different day. Well, yes and no, really. So, with several more days to think about it and one very open conversation this afternoon, Mark really wants to do this chemo-care thing . . . he got it worked out with Rusty (his housemate) and made a google calendar so Brian and everyone knows what dates are my chemo […]

Ugh, am I ever going to get over this cold? The cough is so deep and gunky, and it tightens all the muscles across my not-yet-recovered from surgery right side. More tea, more rest. And still a huge pile of e-mails to reply too. The response from so many people has been so amazing. I had no idea so many […]

The MUGA test was today. They want to make sure what condition my heart is in before chemo, and then they’re going to check this again half-way through and again at the end of chemo, before putting me back on my heart medication. First they drew two vials of blood (why the hell can’t they make vials in different sizes, […]

I have a decision to make. Actually, I have several decisions to make, but the most complicated one is where to do my chemotherapy: down in Sacramento, or out in Yankton, South Dakota. I want to let my parents take care of me, but I don’t want to abandon my life for six months. And of course no matter what […]