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I know that by now I shouldn’t be surprised at how difficult it is to achieve anything like a steady state in my life.
I’m a slow learner, though, and it still surprises me how many highs and lows can be crammed into one short week. A week ago I cheered my daughter’s school volleyball team to a resounding loss. Thursday was the end of week one on Tarceva and, although the rash I was told to expect was becoming more pronounced, it was certainly nothing I couldn’t live with. I woke up with a sore throat, but assumed it was related to my maniacal cheering at the volleyball game. Friday I gave an interview to a local radio show about my story and the Free to Breathe 5K in Glastonbury. Shortly thereafter, I started to have cold symptoms. Saturday morning I started my day at 6:25 am with an interview at one of the local TV stations about the Free to Breathe event. At 10 am I went down to the village green with my father and stepmother to watch my son march in the local citizens’ day parade. By this time I was sneezing all the time and my nose was running constantly - not the best thing when one’s Tarceva rash around the nose and chin is progressing.
Sunday morning was the Free to Breathe event and a beautiful day it was. The morning dawned crisp and clear. My team consisted of ten people with over five hundred participating in the event altogether. I spoke briefly to the crowd before we set off and then walked my 5K. It felt great to be actually doing something to contribute to the larger fight against lung cancer. Meanwhile, both my cold and my rash were getting worse.
Monday I felt so poorly that I tried to call out sick. They couldn’t find anyone to cover my shift, though, and by the time I got up and showered I was feeling well enough to get to work. I called my oncologist and asked him to call in some antibiotic gel for the rash. Tuesday I was off and went to see my oncologist for a scheduled follow up. He was thrilled to see the rash and brought the nursing staff in to see it. I was feeling pretty overwhelmed by this point - my scalp hurts quite a bit and I’m having trouble sleeping and the facial rash is painful and very ugly. I actually broke down and cried in his office yesterday, something I’ve only done once before. He drew blood and prescribed antibiotics and I went on my merry way.
Today the rash is so severe on my face that my nurses are warning patients about it before I see them. So here’s the thing about lung cancer. It’s a very nasty opponent. Even though I am currently at least even on the scoreboard - stable disease and still as active as before diagnosis - it keeps inflicting minor cuts and bruises and indignities. It keeps reminding me that, while I may be able to manage this chronic disease for now and an unknown time into the future, it’s not likely to let me have my old self back for any significant period of time. Whether symptoms of disease or side effects of medication, there is likely to always be something dragging at me.
Being alive and dragged at is a heck of a lot better than the alternative, so full speed ahead it is. Maybe the medicines will help the rash. The cold is much better already. Hopefully the rash means the Tarceva is working and my next scan will be a thing of beauty. Maybe the girls will win tonight’s volleyball game and the Cubs will win the World Series. See, there’s my old optimist finding the sunlight once again.
www.nationallungcancerpartnership.org
Add a Comment2 Comments
Lisa, it was good to read your post. My mother started Tarceva eight days ago, she's got some red patches on her face but no real rash. She had to start taking steroids about five days ago as a MRI showed up some progression in the met she has in the brain. She has been a lot better though. Keep up the active life, you are an inspiration to people reading your article! Wishing all the best, Natalie
April 6, 2009 - 2:50pmThis Comment
Lisa,
Thank you for such a detailed, interesting and thought-provoking post. What astounds me is people like yourself who are able to keep active -- both physically and mentally -- with things other than your illness, not letting it get you down or change your life more than it has to.
I wish you all the best, except maybe for that Cubs World Series -- some things might just be too much for the world to take, LOL.
March 25, 2009 - 10:07amThis Comment