Yesterday I began treatment to prevent a re-manifestation of the issues for which I had surgery in September. Since they took out where it showed up in the first place, it would counts as a new condition if it spreads anywhere.
Barring side-effects, I’ll be returning for treatment every three weeks five more times, then dealing with the effects for some period of time before things return to “normal” whatever that is.
There are a number of things the medical profession doesn’t really cover until they’ve got you plugged in after waiting for two hours with no way to back out.
1. I am officially immunity suppressed for at least the next six months. My normal personal space just got a lot bigger, and you will find a variety of aids in maintaining that on the table as you enter my office. Note to office suppliers: might be good to stock up on Purell and disinfectant hand wipes. Chlorine and alcohol for the win.
2. Each treatment begins with steroids, which will be in for about 48 hours after treatment. This makes Wednesday’s good because the side effects should be easier for two days, then really hit over the weekend. This is your official steroid warning. If you don’t know what that means, ask Diane, Dane or Jason, they’ve been exposed already. Interesting side-effect, I feel like I’m working really hard, but so easily distract---squirrel!
3. Next week, the fatigue and more interesting side-effects kick in. not to mention the generous use of the anti-nausea meds and their soporifics. So, sleepy, slow, and frequent bathroom issues. I’ll get here when I can and work til I can’t. I have a phone whose battery is at the end of its lifecycle, so while I will try to keep up, replies may take a while.
4. Don’t dump everything on Carol, especially not behind my back. She’ll try to do it all, but if I can guide her it will save time in the end. She’s got enough on her plate without having to re-invent the wheels in our special processes. And I’m dumping some extras on her, that will be a priority over the things you might bring to her. Give me a shot at triage first.
5. What I should or can eat will change drastically as well. I’m calling this an opportunity for planned weight loss, as long as can keep fluids & electrolytes up. Do not let this alarm you. Unless I get hungry enough to go after live prey.
6. They have promised hair loss. Sadly, no promises were made that the hair I’d like to lose will go first or wait til after all the hair I’d like to keep is gone. I have some hair coverings, and wigs but plan on maybe a couple more wigs for the short term. Taking votes, curly red wig or silver white straight hair appropriate to my age? Should I go straight up Native American?
7. I appreciate all the good thoughts and well wishes I’ve received. All the treatment to date has gone really well, in large part I’m sure, to strength you’ve given me.
8. I’m supposed to keep a record of reactions and conditions for this round of treatment. The most effective way is on my Livejournal blog. If you see a tweet show up from me labeled TMI with a link to my journal, don’t click it unless you really want TMI. For two years, I couldn’t get it to post from my journal to twitter, and it fixed itself this first time I made notes.
9. If your body tells you something is wrong, please listen to it, and make your doctor listen too. The main question I’m getting is why we caught this as early as we did. The annual checkup early this year, forced on me by my husband, led to the conversation for a referral to a specialist, who did tests and sent me to a surgical specialist. The basic symptoms could still be explained under the heading of “I’m feeling old, tired and fat”. I’ve since discovered that some of the issues weren’t just in my head or included in the above. Except maybe the old.
10. Also steroids and blood sugar levels do not play well. The war on candy in my vicinity has begun. It could get ugly.