Despite our outgoing, fun personalities, Dave and I have never been ones to love carnival rides.

We are always the ones encouraging our nephews or nieces to try the “gentler” rides rather than the upside-down roller coasters or free fall rides. Perhaps this is because we didn’t realize we would be getting so much practice on “up and down” rides in our personal lives.

• This past week can only be categorized by lots of good and lots of bad. Since I always have on my rosy shades, I will start with the good:

• After what seemed like years of suffering, I finally got in to meet with the pain management team at MSKCC and they seem to have really helped with my quality of life these past few days. They took me off a lot of the “short-acting” pills I was taking and focused more on “long-action” patches that stick to your body and dispense pain relief continuously throughout the day. What a great decision! Don’t get me wrong, my pain is no walk in the park, but now I can sleep for hours during the night without waking up, I can sit in a position for more than a few minutes without fidgeting and I can manage to go on very short walks. For someone who really prioritizes their quality of life, this is making me a much more willing “partner” as we try to find treatments that will work on the tumors. 

• Because we started to get the pain a bit under control, I was able to get out of the house for the first time in 6 weeks to attend some short yet critical Cycle for Survival meetings. I met with the Equinox team for an hour to discuss their plans for blowing out the event for 2011 and we also hosted a “kick off” function to get people motivated to register, ride, recruit and raise funds! I had to bring my pillow and sit with my legs up during the event but I was able to speak for a few minutes. I am going to attempt to share the 5-minute speech I gave here. There is also a video that the hospital made called Jen’s Story that talks about the origins of Cycle for Survival and I will update that shortly. You can also see it at the Cycle for Survival website.  Progress has been good this year for the event. We have about 300 bikes signed up which is a great start. We have about 600 remaining among the markets (NY, Chicago, Long Island and the newly announced San Francisco!) Please spread the word and encourage your friends and family to sign up TODAY at cycleforsurvival.org.

• I was inducted into the Livingston High School Hall of Fame.  Although I was unable to attend the event, my good friend Jeanne Joyce and my father gave a beautiful speech on my behalf and my mother went to the high school and spoke to various student groups about the importance of giving back.

• Many of my friends have gotten creative in how they build awareness and support for Cycle for Survival. My friend/nutritionist Lauren ran the Chicago Marathon two weeks ago in my honor and my friend Kat is running NY next week. Kat’s son decided that instead of birthday gifts this year he would ask for donations to Cycle for Survival (see the adorable picture attached). And other friends in middle school have donated their hair to Locks of Love and have organized Jeans Days to raise money and awareness. 

These actions make me truly happy. It’s important to remember this “good” when unfortunately we learned a lot of “not so good” this week.

• We were optimistic that my lessened pain in some way correlated with the tumors shrinking, but this is not the case. We found out through a CT scan this past Thursday that the trial was not working for me, and the tumors have continued to grow. So, I am now off the trial. We spent Wednesday in Boston meeting with one of Dr Maki’s esteemed colleagues from Dana-Farber Cancer Institute hoping that he would have some new drug he is working on that I might be a candidate for. Unfortunately, there is nothing coming down the pipeline in the short-term that seems promising for my situation. 

Although it was very hard to hear another renowned sarcoma expert talk about “the tough place” we are in, we were happy that the two doctors brainstormed and developed a treatment to put me on now that we are hoping will be the magic bullet to stop the tumors from growing so quickly. So, on Friday, I started a two-drug chemo combination (1 intravenous drug that I will take 1x every 3 weeks and tablets that I will take for 5 days every 3 weeks). One of these drugs is very new to me so hopefully my tumors will be surprised and won’t know how to react. The treatment is pretty strong so I am likely to be very fatigued and nauseous over the weeks ahead. As I said earlier, if we can keep the pain in check, I will find the strength to keep going with the treatment.

• We also found out that my very swollen hips and legs are being made worse by a blood clot from the tumors pressing down from my abdomen. I now give myself blood thinner injections 2x a day to prevent the clots from getting worse. Luckily, I have never minded giving myself injections and it’s really no big deal at all. 

• I also am getting into the habit of needing bi-weekly blood transfusions because my energy and bloodwork can get so low. They sound a lot scarier than they are (see picture). They actually make me feel so good and immediately help me with my appetite etc. so I will continue to get them as my blood counts will likely continue to fall with this aggressive new chemo regimen we are trying.

So that’s how the week went. What will make me more comfortable? If the chemo can shrink the tumors, then hopefully some of the fluid will drain from my body and I won’t continue to weigh 25 lbs more than I did 3 weeks ago. If the tumors shrink, there will also be more “space” for me to breathe and eat (all things that you take for granted until you have no room for them).

The doctor in Boston said something that really resonated with me. Although it was not what I wanted to hear, he said, “The equation has changed. We are no longer looking for a cure, as that is pretty unrealistic. What we are looking for is a treatment that can shrink your tumors so that you can lead a manageable life and the tumors are not pushing on organs to cause a life-threatening situation.” Although this is hard for all of us to hear, please start thinking of “success” by this definition.

Dave’s parents are coming from Chicago in a few hours for a short visit so I will sign off. Please continue to send your good wishes and put your energies into Cycle for Survival. We love hearing from you but please refrain from asking specific medical questions or asking broad questions like, "How are you feeling?" which seem pretty easy to ask and really hard for us to answer.  Just be supportive and hope and pray that we can shrink these tumors with this new treatment.

I am hoping that the pain continues to be manageable this week and I can write again soon and manage short visits to our home.

Love, Jen