We had a wonderful turnout for Miles for Melanoma and including some corporate matches, Team Willett (that’s YOU!) raised over $5000 for MRF. We had 50 people walk just with us. I had friends and friends of friends with their own teams and fundraising. Attendance doubled since last year and $40,000 was raised. I really believe we are all making a difference. At the walk, Tim Turnham, executive director of the MRF said he truly believes that in five years, half of all people with melanoma could be cured. Five years feels like forever from here.
So far so good on Ipi. I go back on Oct 22nd for Round 2. I have some fatigue, just got steroid eye drops and I have a little heartburn. Neuropathy (permanent nerve damage – from biochemo in my case) in my legs is all stirred up and hurting so I didn’t make it very far on the walk, not even as far as last year. I was walking 2 miles at the Y a few weeks ago, but I try not to dwell on it. I am focused on the big prize here – managing any side effects of Ipi to avoid permanent damage and also enabling me to continue the treatments. The plan is to put me right back on Zelboraf when I finish Ipi. I can’t even think about it.
I am grateful things are going well so far. Day 8 on Zel found me spending the night at the hotel Vandy for IV steroids to calm a horrific rash. I hate the hospital but the steroids worked.
We enjoyed hosting a few people at the house after the walk, then #3s soccer game, and a Cub Scout family camp out. I didn’t actually sleep in a tent in the rain people, I’m not Wonder Woman! I’m so high maintenance at bedtime anyway with my creams, toe to thigh compression stocking, and eye gel with accompanying game of Marco Polo to find the bed. Imagine this in a tent with sleeping kids. High potential for disaster.
Sunday was family day at Alan’s office where Alan and both older kids ran another 5K. They are still hurting.
Here’s a picture of me vs my teenager in the joust pit. I never had a chance. I’m proud of him. He didn’t come after me when I was down. Alan as I took off my shoes: “Are you sure this is a good idea?” Me: “No, but what could possibly happen?”
This is harder than it looks. I highly recommend having someone hold your hair down while you remove the helmet, if you think this might be an issue.
Since our soccer club invited us to purchase pink training shirts to wear during October, I emailed them to ask why they had specifically decided to only support research for breast cancer and if my daughter could wear her Miles for Melanoma t shirt. I haven’t heard back yet.
Don’t get me wrong, I hate all kinds of cancer, I have breast cancer in my immediate family (and colon cancer) but everyone already knows that Oct is breast cancer awareness month. My friend coined a term for this – “Cancer Patient Discrimination”. It happens all the time. I was told at the Y they have a class for “breast cancer patients only” and “I guess you could come if you want to”. Thanks, but no thanks.
Peace to you all — Amy