May 31st – Who Wants to Have Surgery over the Summer Anyway?

I had my 3^rd CT scan since I started this round of chemo and the great news is that the chemo continues to work. My tumors continue to shrink and I am showing “excellent response” compared to most patients. Of course, this is a huge relief.

I sometimes find that I have to catch myself from saying to the Doctors, “But I showed excellent response last time and you told me I was in the top 5% of responses from all patients and my cancer still came back!” Of course, this type of attitude is not productive. I just need to accept that every exam with an absence of bad news is, in fact, a step in the right direction. According to the Doctors, it doesn’t matter what chemo cocktail I respond to, as long as I respond to one. So, let’s hope the cocktail I am getting every Friday works for good.

I find that the more I learn about cancer, the more I realize how ongoing treatment is a science of “trial and error”. I think we all would like to believe that Doctors know exactly what plan they are putting you on, how long it will last, and the likelihood of survival/recovery. However, despite the fact that I am working with the best oncologists and surgeons in the world, I still often get the answer “we don’t know…we’ll just have to wait and see”. This doesn’t necessarily scare me, it just makes me realize that cancer treatment is not black & white at all…every patient is different and doctors are learning as they go.

A good example of this is the conversation Dave and I had with Dr. Singer, my surgeon, when we met with him last week. He examined my x-rays and we discussed the benefits of my having surgery now or waiting until I had received more chemotherapy. Dave and I were expecting there to be a very scientific answer but the answer we got from my Doctor was “Well, I could do surgery now or I could do surgery a few months from now. The timing of the surgery is really irrelevant. I like my summers and if I were you, I wouldn’t want to have surgery while the weather is nice. So,unless you are not tolerating the chemo well and feel the need for a break, how about if we plan it for end of summer or September?” At first, Dave and I thought the Doctor was kidding. However, he was not. He explained that I am “signed up” for a lot of chemo with surgery somewhere along the process. Having surgery sooner rather than later will not reduce the total amount of treatment I will be receiving. I so appreciate him allowing me to enjoy my summer but it was not the response Dave and I were planning!

So, that being said, it looks like a few more rounds of chemo, surgery in a few months and then perhaps more chemo after surgery (TBD). As long as I continue to feel good, this long range plan doesn’t make me sad. The truth is, once you’ve started and the hair has already fallen out, you might as well keep going until your body tells you to stop.

I continue to feel great! Dave and I spent last weekend going to a sarcoma conference and a gala benefit where we got to meet many medical specialists from around the world. It was both inspiring and sobering. So many people had heard about the success of Spin4Survival which was so great. I continue to realize just how much the $200K+ that we all raised is making a difference in the world for so many. Stay tuned for more news about Spin4Survival II. The video was just completed and it looks great. I am hoping to post it in the next week.

May 13th - Looking for a Happy Medium

I just finished my 4^th round of chemotherapy on Friday. I am sitting home dealing with the unfortunate side effects that accompany the first few days after my “big dose” treatment. The steroids I used to take would make me jittery and keep me up all night…however, they also prevented nausea. Since I did not like them, my doctor agreed to lower my dosage. However, now, I am up all night feeling nauseous! It’s a trade-off between insomnia and nausea and I chose nausea. At least this only lasts for a few days.

I have been very aware of the fact that I have been acting schizophrenic lately. Don’t worry, all of the treatments have not contributed to giving me a mental disorder. However, I feel like I am often giving mixed signals to people regarding how I want to be treated during this process. Most of the time, I want to be treated “normal” and I don’t want people to dwell on my disease. However, sometimes, I wouldn’t mind a little special treatment. Here are a few examples that bring this predicament to life:

• I get frustrated when Dave and I go out with friends for dinner and he doesn’t notice that I am getting tired and need to go home. But on those nights that he constantly checks in with me, I get annoyed with him.
• I love Gustavo, a personal trainer that helps me stay fit, because he pushes my physically despite my cancer. He doesn’t notice that I don’t have hair and that sometimes I am weak…every time I see him he challenges me to get stronger. However, when he pushes me a bit too far, and tries to get me to do an exercise that I don’t have the strength to do, I get really angry.
• I made such a point of telling my friends and family NOT to check in with me constantly and treat me differently this 2^nd time around but, I have to admit that I miss the phone calls, letters and care packages that people used to send.

I find that my moods and desires can turn on a dime and I can never anticipate how I am going to feel ahead of time. The truth is that I want so much for this disease not to slow me down that sometimes I don’t like to admit to myself that I am not feeling 100% or that I have a valid “excuse” for not feeling strong, or for feeling tired.

I am constantly asking myself, "What's the Happy Medium?" - what behavior should I exhibit that would be a good compromise between how I really feel and how I wish I was feeling.

So, please bear with me and be patient as I work through these mood swings that I am experiencing. And please check in with me…it is always nice to hear from people who love you.