Back home last night after the second week of the combined chemo/radiation treatment. Another long week in the hospital. Why is it that it’s impossible to get any rest in a hospital? They are not quiet nor restful places. At least this week I had a room to myself, which made it a little easier to get some work done including attend meetings by phone and meant that I didn’t feel bad when having visitors chatting me up.
I’m now exhibiting the side effects that were predicted – sores in my mouth and throat, lots of mucus being produced by my body as it tries to fight off the assault (one of the PAs said “you’re going to feel like you have a sinus infection for the next few months”), dry mouth, and general fatigue and loss of appetite. The goal is to keep eating through all that – they’re recommending between 2000 and 3000 calories a day. That’s hard to do when you can only eat soft, non-acidic, bland foods. The recommendation from the docs is to take pain meds (oxycodone currently) an hour before eating – they say that they can’t cure the causes of the pain during treatment, so the only approach is to mask the pain long enough to cram some food through. Of course the pain meds have their own issues – wooziness, constipation, general space brain conditions. I’ve got more pills than any one man should have, and it’s getting hard to keep track of them.
But I have to say that I’m in much better shape than many of my fellow patients – perhaps because of the smaller radiation field being used as a result of the success of the initial chemo in attacking the tumor. Hopefully I’ll recover some of my elan over this week at home before I have to head back in for the next round! My dad’s coming out this week, which will be great. We’ve had a steady stream of visitors from hither and yon, and it’s wonderful to get that kind of support from all our friends and family. And my wonderful colleagues in Web Services have been sending a steady stream of humorous postcards which really lighten the mood.
Meanwhile I’m looking forward to this being over and starting to think about warm weather bike riding – If you’ve got favorite rides around Chicago or the area, post in the comments!
Oren Sreebny 
Oren- thinking of you and sending good vibes from Iowa. You are inspiring.
LikeLike
Glad to hear that you are home. I once had to spend 7 weeks in the hospital, when I was on bed rest, pregnant with twins. Never in my life have I have so much trouble sleeping! I finally hired a masseuse to come in once a week and I put a sign on my door that barred EVERYONE, even doctors, from entering. 2 hours a week, I slept like a baby. You sound brave, strong and grounded in reality. Hang in there!
Lynda
LikeLike
+1 re the positive reaction to chemo and hopefully radiation.
+2 on the positive attitude!
LikeLike
Hi Oren,
Sounds like you managing to stay positive, it’s really the only thing you can do, huh? One word of advice – DO NOT FORGET YOUR DAILY DOSE OF LITTLE ORANGE GELCAPS!! If you do the pain at the other end will make you forget the pain in your throat!! 🙂
LikeLike
First let me say how glad I was to learn that you came home, through Michele’s post.
I 100% agree with you that hospitals are horrible places to recover! i still have yet to regain a real appetite thus I am right there with you. And the pills? If you need to take more pills than one man should, then I have more than any woman should. The only way I can keep track of them is pre sorting morning and evening medications. The ones that I can take “as needed” in between I just leave in the bottle. I know when I need them.
I am sorry to learn of the side effects from treatment. But I cannot think of any better salve than seeing your dad! There are not enough words in my vocabulary to express how spectacular I think he is. I have great confidence that the combination of him, Michele and Mo with bring some of your sparkle and zip back.
I love you! ❤
LikeLike
Know exactly what you mean about hospitals been lousy places to rest. They’re exhausting! Thank you for posting about how you’re doing and very glad to hear that you’re your resilient self.
Very best,
Mairéad
LikeLike
Dick Falkenbury here. Ran into Eric Gorbman and he informed me.
I was right with you until the last: steriods! Oren, you’ve ruined your chances for next summer’s Olympics!
I am out of work, apparently unemployable and depressed. Working with a counselor (“You’re not only f**ked up but it’s all your own thought–if that helps any”).
I am at falkenbury@w-link.net (have a lame Facebook presence that I hope to improve significantly, soon, with the help of someone calling themselves “The Network Thor” or something.)
Falkenbury
LikeLike
Oh Oren! What’s a bunch of mucus and a seemingly endless sinus infection when the end result will be kicking this thing? When I was a girl my father and I cycled through Lincoln Park almost every weekend. It was glorious!
Love to you and the family.
Bridget
LikeLike
I agree with everything above. When you say no appetite does that include ice cream? Seems to me ice cream would be easy on the throat, would keep your weight up and wouldn’t be acidic or constipating.
Hang in there.
Chaike
LikeLike
Agreed as with all the above. Especially second Lynda’s suggestion about a massage. One of the best things I did was to have regular cranial-sacral massage while I was going through treatment. It really helped support my general well-being and my body’s ability to accommodate/withstand the side effects of treatment. If interested in trying it, perhaps you can find a practitioner who can see you during the offweek and/or who can come to hospital to work with you. Completely non-invasive, gentle and the results can be astoundingly wonderful! Can be pricey, but, to me, worth every penny and more!
LikeLike
healing <<<<>>>>
LikeLike
Hi Oren,
I thought I would chime in to send warm wishes and healing thoughts from Seattle. As a former Chicagoan who used to ride my crummy Specialized around town quite a lot, I really recommend riding the boulevards to string together as many of the Olmsted parks as possible on a sunny afternoon. From your end of town: Jackson, Washington, Sherman, McKinley, Douglas, Garfield, Humboldt, Lincoln, Grant and home. Or any subset thereof.
I have especially warm memories of watching baseball players at McKinley Park on Sunday afternoons, while eating coconut ice from the Mexican cart vendors.
Get well and get out there!
LikeLike