My Cancer Journey 1

Martha gave me this
cozy blanket. It was
so good to have it in
the hospital!

Dear Friends,

As many of you know, I was diagnosed with cancer at the end of October. To help share information with the many, many kind and caring people who are concerned about this, I am resuscitating this blog, "Tenacious Grace," which I started a number of years ago but has been dormant for quite some time. (Check out some of the old posts. They aren't half bad!)

I thought it would be easiest to share updates, news, and the occasional reflection here rather than repeat it with each inquiry. Check back periodically and you'll have the latest on my cancer journey.

I'll start with the quick background and then share the latest update.

As you probably already know, I have a tumor in my right, upper pelvis area. (To put it crudely, it's in the upper part of my butt on the right backside.) It's a soft tissue sarcoma, which is a relatively uncommon kind of cancer. My specific type is even rarer. It's called sclerosing epithelioid fibrosarcoma (or SEF). That's the technical name, but informally I call it "my butt cancer." Unfortunately, a tumor of the same type was also found in my appendix. It has since been removed with clear margins, which is good. I can feel the tumor in my body, but most of the time it does not bother me. Except at night. For some reason, when I lie down -- in just about any position -- the tumor puts pressure on my sciatic nerve and causes varying degrees of right leg discomfort and pain. Some nights, it doesn't bother me at all. Much more often, I'm up 2, 3, 4, 5 or more times, pacing up and down in the bedroom to work out the achiness. It was in trying to get to the bottom of the right leg sciatic nerve pain that finally led to the discovery of the tumor and the cancer diagnosis.

It's been a whirlwind of medical appointments and a roller coaster of emotions and thoughts since the diagnosis. I've had more medical appointments in the last two months than I've probably had in the last 10 years. I've had two CT scans, an MRI, and a PET scan. I've met with the surgical oncologist, the medical oncologist (twice), had surgery to put an IV port in my chest, and have started a treatment plan.

The good news is that the PET scan did not show any additional tumors. That doesn't mean the cancer isn't lurking elsewhere, but it is a very good result.

My treatment plan starts with chemotherapy. I'll have six rounds of chemo and then, possibly (hopefully) surgery. But that is pretty far down the road at this point.

I started chemo last week. I spent four days at Oregon Health Sciences University hospital while receiving two chemotherapy drugs by IV infusion. (Hopefully future infusions will be done on an out-patient basis.) The first day or two went well and I felt OK. But Wednesday night, Thursday, Thursday night, and Friday morning were rockier. I got very little rest, struggled just a bit with nausea, and just felt lousy. 

After I got home on Friday, I took a long hot shower without any IV lines which was amazing. Then I took a 2 hour nap -- I was out cold. As Friday ended, I could see "normal" off in the distance and had a bit of hope. By Saturday morning I felt much better, and then felt increasingly better throughout the day. Sunday continued that trend. I don't feel "back to normal" or 100%, but fairly close. 

I actually went for a slow run today -- 3.5 miles. When I got home from the run, I felt almost giddy. I wasn't sure if I'd be able to run at all after starting chemo, so even though it was a classic Oregon morning -- overcast and raining -- I was overwhelmed with what a beautiful day it was, indeed.

I suspect that with each successive round of chemo I won't bounce back as much or as fast. But at least right now I am grateful that I've recovered from round 1 as much as I have.

Round two of chemo is scheduled for January 3, 4, and 5. Again, hopefully this will be outpatient. They are long days -- from 7:30 a.m. into the early evening. But it's worth it if I get to sleep in my own bed!

Thanks to all of you for your kind and caring words, cards, and gestures. It is much appreciated!