Tuesday, October 30, 2012

So It Begins....

I'm sitting at Mayo waiting to have MORE blood taken for my first immunotherapy treatment this afternoon. This is my first time posting from my iPhone app so if this post is weird, I blame the app! :) Yesterday I finally got the long awaited news that I'll get ipilimumab and not interferon in the clinical trial, which was the news I was hoping for. My treatment schedule will be every 3 weeks for 4 treatments, and then every 12 weeks after that, for about 14 months total. It'll be a whole day of Mayo Clinic fun every time, with blood tests in the morning, then an appointment with my oncologist, Dr J, & then the treatment itself which takes 3 hours total. But at least it's not very often, and the bad side effects should be minimal. There are of course nasty side effects that can occur, and they'll monitor me closely and pull me off the meds if I have serious side effects.

I actually feel ok about all this, I thought I'd be an emotional wreck today, but I'm not, I slept great, and I really feel pretty good. From what I've read, I shouldn't really have any side effects from the first treatment. I might be a little tired and/or nauseous but that should be it.

Well that's all I've got for today, hopefully there will be nothing else to report!

Wednesday, October 24, 2012

Hillary Quinn Kind

Hillary Quinn Kind lost her battle with melanoma this past Sunday, just 2 days before her 26th birthday. She was featured in this year's Stand Up 2 Cancer, and I had heard of her, but didn't watch her video segment until today when I learned of her death. She was diagnosed when she was about 17, so please please please don't ever think you're too young for melanoma, or anything else! I don't share this to scare or worry anyone, especially those who are already worried enough about me, but to try and do my part to raise awareness for something that people still don't take seriously enough. If you smoke, it's pretty much accepted that cancer is a big risk, but if you tan indoors or out, no one really understands that it's putting you at greater risk for melanoma. That was me too, because my own mom had melanoma, and I continued to tan. And I can't say I don't miss it, to be honest! My biggest piece of advice though, is to see your dermatologist at least once a year, and if you feel like a mole needs to be checked, insist on it, whether your doctor agrees or not. There are plenty of cases when melanoma doesn't "look" like melanoma, and it's a sneaky, sneaky cancer. As great as your doctor may be, and as many people as you might have who love you and care about you, YOU are in charge of YOU and your health, no one else. One of my biggest regrets is that I didn't see a dermatologist after my mom had melanoma, or at least when I noticed the weird mole on my shoulder. I don't dwell on it, because it's in the past and I can't change it, but I most definitely would if I could. Even at an early stage, melanoma can progress, but of course early detection is important, just like any other cancer. Hillary's wish was that something good would come out of her having cancer, so today, do something good for yourself in honor of this very brave and very strong young woman!

Monday, October 8, 2012


I've been thinking a lot lately about choices. Not the choices we make to do one thing or another, but the choices we make about how we react to things we have little or no control over. This past weekend, I decided to run the Marine Corps Half Marathon, even though I hadn't trained for it. I'd started training back in June or July, but got sidelined because of my surgery in August, and basically just gave up on being able to do it. But the previous weekend, I ran 7 miles, after 2 months with no running, and it wasn't bad. So on a whim, I decide as long as the radiation treatments that week didn't hit me too hard, I was gonna run the Half. Well, 13.1 miles is a long way to travel by foot, and I was NOT ready for that distance! Obviously I had a choice to stop running/walking, and give up, but to me, unless I broke a bone or something, that was not a choice. It was bad enough that I was stopping to walk a lot, if I'm going to run a race, I want to RUN the race! But I got over that real quick and started walking every few minutes, and towards the end, walked even longer with a friend who was working on his first half marathon.

The point of that long story is, during the race, there were a lot of times I thought to myself how dumb I was for doing this, how unprepared I was, how I should've just done the 5k instead of the half marathon, and in general, this was probably the dumbest decision I've made in a while. But, every time those thoughts crept into my head, I CHOSE to instead thank God that I was able to do this, that it took 10 miles before the pain really set into my legs and my feet started killing me. I thanked God that I was able to be up and moving around for 3 hours (yes, it took me over 3 hours, this was my 5th half marathon and my slowest time by far - but who cares?!). I just thanked God for the ability to put one leg in front of the other (over 31,000 times - that's a lot of steps!).

It's not always easy to find good in every situation, but it's worth a shot. We don't always have a choice about things in our lives, whether it's a job we dislike, a traffic jam, a divorce, illness affecting loved ones or ourselves, a difficult person in our lives, but we have a choice in how we react to that situation or person. Our attitudes can't change the situation we're in, but it can make things easier to deal with, and make us more pleasant for others to be around. You never know how a kind word or smile can affect someone else, I come across other patients a lot at the many doctor appointments I've had lately, and just a short conversation in the elevator can make my day sometimes. I can't imagine how my days would be if I allowed my circumstances to take control over my attitude, I would be a really miserable person. Trust me, there are times I do feel miserable, and there are plenty of times I don't react the way I should, but I do make a conscious effort to be above my circumstances and find joy and peace in everything.....even running/walking 13.1 miles :)

It seems like negativity is everywhere - if you doubt me, read your Facebook newsfeed! So why not try to be positive in this world of selfishness, hatefulness, and ugliness? It seems like a lot of people, even (or especially?) Christians, are fueled by hate - we're supposed to hate sin but love the sinner, and sometimes that 2nd part seems to get lost. We are going to have to deal with difficult people and difficult situations, that's life. Choosing to whine and belittle others only makes you look spiteful and unattractive. Why be "grumbly hateful" when you can be "humbly grateful"? (That was for you, mom).


Update on Radiation - today was my 5th and last treatment, I have had very minimal side effects so far, the skin on my left side is a little tender and pink, and that's about it! The people there are great, and I'm going to miss them a little!

Also - this week I'll have my blood work (that was today & luckily this time they knew what they were doing & I don't have a huge bruise on my arm!) and scans done, both as a routine check up thing, and as prep for the clinical trial. I am hoping and praying that: the scans etc come back all clear, no new issues, I get into the clinical trial, and get the new medicine, and high dosage, AND that the side effects from the drug treatment are minimal, and of course that it works, even though I believe my true Healer comes from above, and is not in drug form!