Friday, July 1, 2011

Side effect update


In this blog mid-treatment, I ran down the expected side effects. Now that I am almost two weeks past the end of treatment, I thought a rundown of where I am at is in order.

But, before I do that, I just want to remind everyone that my prognosis is excellent. I have over a 90% chance that I will go into complete remission and this will just be this really weird incident in my life. All my doctors are really pleased with my progress. There will be a lot of follow-up, of course. But expect to hear only good news from me on that front.
  • Fatigue
    Yep, I certainly have this one. The docs say I won't be back to normal in that department for 6 months. I hope that isn't true. But, I am, indeed, quite fatigued. Normally I sit in my laz-y-boy most the day and read or watch TV. I've been watching the women's world cup, the Giants (those last two losses to Chicago were really no fun) and, soon, the Tour de France. I used to sleep about 7 hours a night. Normal now is 12 hours. I do take a walk every day, do exercises (stretching, sit-ups, push-ups, etc) and fix things that need to be fixed. Anyway, I am betting that I come back faster than six months. I am much too impatient for a long convalescence. I went downtown today and that was fun.
  • Mouth sores/ muscositis
    Oh yeah, I certainly have this one. This is the problem that was actually supposed to get worse the two weeks after the treatment was over and I do think it has. But, all I can hope is that it starts improving because this problem severely limits what I can eat. Which is almost nothing. I have about five things I can eat, which is all I have eaten for about 5 weeks. It gets really old...And, of course, this problem comes with all that mucus.
  • Neck burn exterior (and interior)
    Well the interior burn certainly happened; the exterior burn didn't. It was probably because I was already very tan in my neck (from the three months in Hawaii) and I followed a regime of skin care that they recommended to limit the burn. It worked.
This is about as red as it got.  The neck just looks tan now
  • Hair loss where radiated (on the neck line)
    Yep, it happened. I don't think anybody noticed. But, here is a picture.
  •  
  • Loss of taste, appetite
    You know my taste never really went away, it just got a little wonky. But, I certainly don't have much of an appetite except for those five things. I am looking forward to actually adding food and seeing if my appetite returns.
  • Weight loss
    Well, this was a really strange trip. I had started at 149 (having gained four pounds intentionally). Right before my infection, I was at 144. Then, I started getting hydrated and I actually gained a ton of water weight. When I left the hospital, I weighed 156 pounds! At least 15 pounds was water weight as I hadn't been eating nearly as much as I had earlier.  Two days after I left the hospital, I weighed 135! And, it wasn't like I was peeing a lot. I think I lost it through the mucus. Anyway, I have been maintaining that weight since then.
 
So, I will let you know when my mouth improves. Beyond that, assume I am getting stronger every day. 
 
And, by the way, I got tickets to the opera on Sunday so we will actually get to sit.

    5 comments:

    1. Thanks for the update, Robin. As you said, hopefully this is just a funky short icky chapter. Your super strong spirit is a huge advantage, i bet. Keep eating or drinking enough, and enjoy the opera Sunday!love you tons

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    2. PS that was from Lisa D

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    3. Good to see you today, Robin. I'll attest that you were looking good.

      Sorry I lost track of you--it's in the nature of Bookshop Santa Cruz, I guess.

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    4. What an excellent report! good good good. I am in awe that you do pushups, not surprised about the fixing things part.

      big hug,
      allison

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    5. I'm so glad to hear that you're past the worst of the cancer episode. You worked hard to do everything right. No wonder the doctors are impressed. I'm sure you will surprise them again with a faster-than-normal recovery rate.

      Wishing you the best,
      Nina

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