Update

I know I haven't blogged in a while. I have a metaphorical stack of half written posts and posts yet to reach my fingers. I've just been too tired. I've had a bit of a rough go of it lately.
Here's what has been going on…


The clinical trial that I had not one, but two liver biopsies for didn't work for me. (I don't begrudge the biopsies I went through, the research will still be helpful to someone.) This was extremely upsetting for me because the trial was pills instead of chemo. I was feeling great, my blood counts were up, I was back in spin class. I was hopeful that this would be a treatment I could stay on long term. But then as I lay in a hotel room in Philly with my bestie, I found a lump. It seemed like maybe it was just on the skin and I tried not to worry.

That Monday I went for an ecco and there was another lump. I saw the nurse practitioner and while she wasn't overly concerned, she moved my scan to the next week (instead of the first week in December).

For a week I was in agony over the pending results. I knew what they were going to be and I was heart broken. I didn't want to go back to chemo. I didn't want to jump into the unknown again. I didn't want to check off another treatment tried and failed.

I got to the hospital ten days after finding that second lump to get my scan results. As soon as the nurse came in I knew I was right. I've become such an expert at this I know what the "exit" interview sheet for a clinical trial looks like and that's exactly what she was holding. She went down the sheet asking the necessary questions and then went to get the doctor. The doctor came in and gave us the bad news; the cancer had progressed and I was going back on chemo. Two weeks on, one week off.

(A small aside - chemo is a word that describes a number of drugs. There are many different types of chemo. It's like the word antihistamine described Claritin, Zyrtec, Allegra, etc)

We didn't waste any time and I was scheduled to start chemo the next week.
That Sunday morning I woke up in a full body rash, from my neck to my knees. I called the doctor and was back at the hospital first thing Monday morning. They gave me some medication and by my chemo appointment Thursday I had cleared up significantly.

That weekend I felt great and thought, "this chemo is not so bad at all." Then came Monday and I crashed. HARD. I couldn't get out of bed. I couldn't even keep my eyes open. I felt terrible. This was the first time I ever experienced literally not being able to get out of bed. I felt incrementally better the rest of the week and then was back at the hospital for round two. My blood levels were low but not too low for treatment so we proceeded. Since i had been having some symptoms typically seen with low hemoglobin I had a blood transfusion later in the week. I started running a fever and bloodwork revealed I was neutropenic. Ugh. They considered keeping me at the hospital but decided to give me an antibiotic.

That pretty much leads us to today where I've been holed up in the house or at work for over a week trying to avoid germs.

I know I don't have any fabulous insights in this post and I apologize for that.  I'm working on it, I just have to stay awake long enough to type it out.