Where I am at these days….

I know it has been a while since my last post and I have received a few messages from concerned friends. Let me start by saying (knock on wood) that I have been tolerating my new cocktail pretty well. It has definitely been easier than the very first one. I have had 4 infusions now and know what to expect and I am getting better at treating proactively the side effects. One of the chemos that I am on, ironically called “5FU”, had to be reduced significantly last time for pretty debilitating side effects. My doctors wanted to start me on the full dose and decrease when needed. I am starting to feel the accumulating effects, but my doctor has been on top of it, monitoring me at each visit. My hands and feet are red, tingling, and burning all the time, this is supposedly because of the toxicity of this drug and capillaries in my extremities popping. But other than that, the worst side effect has been losing my hair… again. Most people don’t lose their hair on this chemo either, they only “thin” but it has been getting out of control for me. I have already blogged about this, so it’s not worth writing more about it. I have shed enough tears over it and I am just trying to not be vain and be more lighthearted about it. My kids prefer that I wear a wig over my thinned shaved head and I will do what is best for them. I am dreading the Florida heat but will do my best.

We had a wonderful Spring Break. It is so hard for me to plan anything but I was thrilled that Spring Break fell on a “off chemo” week. At the same time this was bittersweet. I don’t dwell on how unfair having this disease has been but I still get upset about the fact that every thing I do needs to be checked to see if it falls on a “on” chemo or “off” chemo week. But anyways it was an off chemo week so we could do something as a family. I agonized for a few weeks wondering what to do. I was afraid to fly on this new chemo as I didn’t want to catch anything while my immune system was compromised and going on a cruise was just as frightening to me. Driving to a mountain to ski became our best bet. I was hoping that the mountains in North Carolina would still have snow but as the conditions were so uncertain we decided on Snowshoe Mountain in West Virginia, a good 13 hour drive! Not just because of my situation, but we only found out that we could leave just a couple of days before our departure. I was thrilled that the kids snow suits from 2 years ago still fitted them, although a bit tight lol! The mountain still had snow and although there were thunderstorms in the forecast, we still decided to chance it. I am so glad we did as it snowed and after a couple days of spring conditions, we had 2 days of real winter conditions with a frigid -10F with the wind factor, it was cold!!! It was so nice to be out there, to have the energy to still race down the black diamonds and enjoy time with my husband and my kids in a totally different environment. On the drive there, not once did they ask “are we there yet” but the ultimate question was “mom when are we going to see snow?”, “what about when we get to Charlotte? is there even a remote chance that we are going to see snow?”, “how about when we get to Virginia”?, “but mom, are we going to see snow before we get to Snowshoe?”, “mom are you SURE there is still snow there?” – it was not annoying one bit, it was so precious to see him so excited to see snow again. While we were there I even forgot for good chunks of times that I had cancer. I wasn’t spending as much time online researching all kinds of stuff which I will update you in my next blog post. However, one day, as I quickly checked my facebook, I found out that a fellow fighter named Dov had passed. I met this guy in DC when I was there for a conference in December. This man was bigger than life. He fought Stage 4 colon cancer for 7 years and was diagnosed when his daughter was an infant. He had two kids, same age as mine. He had become somewhat of a cancer celebrity. He would dress up as the Playboy Easter bunny and distribute easter eggs in the infusion room at his cancer center, he would dress up as chemo cupid on Valentine’s day and distribute valentine cards made by elementary school kids to cheer up other cancer fighters, and would dress up as a turkey during Thanksgiving time. He also went through radiation, and every single day of his treatments, he would have his wife write “quotes of the day” on his butt, things like “does this radiation make my butt look big?”. He was the guy that everybody wanted as a friend because he had this gift of making other people feel good, cheering them up during the worst challenges of their lives. He was a stand-up comedian and made us laugh during his speech at the conference, describing his experience going through the airport with his shirt “Fuck Cancer”. He also made us cry when he read one of his poems describing the dark side of cancer and the challenges we could all relate to. As much as he used humor to deal with is diagnosis, his writings were so profound and so realistic, he had a gift in putting into words what, we, Stage 4ers go through. One of his motto was “Carpe the fucking Diem!” and that’s what I tried to do during my trip, seize every good moment with my kids and husband and we even talked about the meaning of carpe diem and made a deal to live by it.

Dov’s passing and watching the 3 part series on PBS called “Cancer: the Emperor of All Maladies” did bring me down for a few days. The documentary on the history of cancer was quite grim for Stage 4 fighters. It made me realize that a cure is definitely not around the corner as we all like to believe. Every time they discussed Stage 4 cancer, I had tears running down my cheeks. I do understand that for the majority of people diagnosed with a Stage 4, it is a death sentence. I have always refused to believe it for me, some people survive, some people even reach a cure. What is it about them? about their disease? I so wish I knew what it was. As a fellow fighter said,  the more realistic (and dark) the picture the more urgency will be afforded the cause to fund research, not just with the general public but with the cancer community itself.

I feel better, getting ready for infusion #5 on Monday. This week has been a good week. I will tell you more about all that I am learning about molecular oncology, personal genomics, and immunotherapy for cancer in my next post!

Carpe the fucking Diem!

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