When I talked to people at work about what I expected from my treatment experience, I said they all keep up their blogs until about week five. In weeks five and six, you see some posts written by their caregivers. Then around week seven or eight, the owners are back again. Yet somehow I’m surprised that I haven’t blogged in… gee, look at that: weeks five and six!
I’ve been pretty sick. It crept up on me gradually: a combination of non-stop nausea (caused by the dreaded and gross mucus), lots of vomiting, very few calories, low hydration, and rapidly increasing pain. I won’t go into a lot of details, but I ended up in the hospital from Sunday, May 20th until Thursday, May 24th. It’s as if my body decided to have all of the side effects that usually start gradually around week three, but have them happen all at once in week five.
Toward the end of my hospital stay, my white blood cell and platelet counts even dropped low enough that I was declared anemic and neutropenic, which led to a hand sanitization station complete with face masks outside my hospital room. All the doctors and nurses who have been treating me were shocked–not at the symptoms, but at the rapid onset. One radiation tech even jokingly checked my hospital band to make sure it was really me.
I missed one chemo, due to the nausea and the low blood counts, and the first radiation after hospital admission. After that, they took me to radiation in an ambulance no matter how sick I was. Keep two things in mind: my hatred/phobia about vomiting (which has made the past couple weeks interesting), and the fact that radiation takes 20 minutes during which time I am flat on my back, pinned under a face mask. I was pretty freaked out about the prospect of starting to vomit while trapped under the mask. I’m not proud of the complete panic attack I had over the thought of it, but I am proud about the fact that I handled it. I talked to my nurses and made sure I had the strongest possible anti-nausea drug (the one I had in chemo, which they had to special order) and the anti-anxiety drug every day before radiation. I ended up feeling less panicked about it, and got through the radiation OK.
For me, the craziest part of the escalation (and realization) of the pain. Prior to hospitalization, I was taking one Vicodin (small amount of hydrocodone, large amount of tylenol) every 6-8 hours. For whatever reason, I wasn’t equating that constant burning in my throat to pain. It finally grew enough that it was impossible not to acknowledge and I ended up getting shots of Dilaudid (much stronger narcotic derived from morphine) every two hours. For the last half hour before my next shot, I was sometimes in agony.
I was released last Thursday, and things went downhill from there. Once I was away from the IV anti-nausea drugs, the vomiting increased to 3-5 times a day. I was barely keeping down food and water (at best, 300-400 calories a day). The only thing that improved was the pain because my radiation oncologist prescribed a Fentanyl patch. Fentanyl is a synthetic opiate 100 times stronger than morphine. It turned out one patch at a time wasn’t enough, and my doctor told me to move up to two (which I’m now using). On top of the two patches, I’m also taking Norco (a blend of hydrocodone that has more of it and less Tylenol) as needed.
Keep in mind that after I had surgery in 2010, a single Vicodin threw me for a loop and I had to stop taking it. I’m a painkiller lightweight, and I’m on some pretty serious narcotics for this pain. It’s helping though, both in my health and in my overall emotional state. It’s crazy being on this much pain medicine… but it’s crazier what that level of pain can do to you if it’s not medicated!
So that’s the big catch-up post. I’ll post one more time with today’s news.