Round Two, Part 2

Round two of chemo infusions were last week. I was at the infusion center from 7:30 

This pretty much sums up round 2 of chemo.

a.m. until about 2:30 p.m. Monday through Wednesday. I can't tell you how hard it was to get out of the car at the patient drop off. It was like my body was screaming, "No, don't!" But I did get out, and once I was on my way, I was OK.

By Tuesday evening, I was really feeling it. And by Wednesday, the full impact descended on me. I felt awful (most of the time) on Wednesday, Thursday, and into Friday morning. Even with the different drugs to counteract it, nausea lurked around the edges. I was exhausted and my brain was foggy. But then, as I got farther away from the last chemo infusion, I gradually started to feel like I was going to make it. By Friday evening, I was feeling much better, a trend that continued into Saturday and Sunday.

I found out that one of the chemo drugs is nicknamed "the red devil" due to it's red-orange color. When I mentioned to one of the nurses that I'd heard the nickname, she said something like, "Oh, don't call it that. Think about it like it's Kool-Aid!" But then ensued a conversation about the Jonestown massacre. So I think I'll just use the drug's real name -- doxorubicin.

The other chemo drug I'm taking can cause neurotoxicity. I'm told to let them know right away if I have hallucinations or twitching. Turns out, on Tuesday my fingers and hands began to twitch involuntarily...just every now and then. Apparently it wasn't serious enough to cause concern, but it was definitely odd.

I've discovered an unknown fondness for my eyebrows. Hair loss is the least of my worries through this whole chemotherapy treatment process. I have classic male patterned baldness. I keep what hair I have on my head shaved close. But somehow, the thought of losing my thick eyebrows...well, it makes me sad. That's going to be a strange look for me when it happens!

My friends Staci and Terry picked me up and brought me home on Monday and Tuesday and then stayed with me (see neurotoxicity, above) until Allison got home from work. I am so grateful for their kindness and help!

Today I am feeling pretty good. This week is when my blood cell count will drop quite low, so I'll experience more fatigue (and be more vulnerable to infection). I did manage to go for a very slow run/walk this morning. Like reallllly verrrry slow. But I was among the trees and alongside the river at the park, and the air was cool and fresh and damp, and my heart was pumping and my blood was flowing and my lungs were filling with air...and I was simply grateful to be alive and moving.

I am so thankful for the many cards, texts, emails, and other expressions of love and support people have sent as I make my way through these treatments. Thank you for your prayers. It is much, much appreciated!

Round 2

Round two of chemotherapy started this week. This time, it's out patient and I am very happy about that. One of the hardest things about the first round was being in the hospital for 4 1/2 days. I didn't go outside the whole time, and I love being outdoors. I started to get cabin fever at the end, spending so much time in one room.

With round two of chemo being out patient, I get to go home, sleep in my own bed, and breathe the fresh northwest air every day.

The two weeks since I last posted here have been a bit up and down. I was feeling pretty good on that Monday I wrote, but later that week it all caught up with me and I had a couple of days when I felt so fatigued I could barely think straight. On day 10 of cycle one, I had a blood test that confirmed my white cell count was super low, meaning I was very immunocompromised. By Christmas Eve, I was feeling better, but then I didn't sleep well and Christmas Day I felt just OK. By the evening of Christmas Day, I could tell I was fighting a fever, which is a little scary when immunocompromised. I talked to the on-call doctor and she was super helpful. I monitored my temperature closely and, by Sunday I was doing better. No trip to the ER required, which was a relief.

Last week, I felt a little better each day, some days more than others. By the day before round 2, last Sunday, I was feeling pretty good...maybe a lot like I did before chemo started.

And now I'm doing it all over again.

I have some anxiety about round 2 because the chemo drugs are being given over a shorter period of time which I'm afraid may exacerbate some of the side effects, like nausea.

As I type this, I'm halfway through round 2. So far, I've kept the nausea at bay. I can definitely feel the effects of the chemo. I was tired and bit weak yesterday evening, and am feeling that way today, too. It's to be expected. 

But after tomorrow, it's 2 of 6 down! 30% of the way there!

I'll post again early next week with an update.

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!