Preparing for the Storm Ahead

I’m not sure if I believe in God but I do believe that most things happen for a reason. For instance, I always think that it makes sense that I got really sick in the fall right after my family was able to enjoy a lovely week at our rented beach house in Long Beach Island. It was as if some greater power wanted to give me that wonderful experience knowing that I would look back and cherish it often in the dark times ahead. While I was in Arizona the last two weeks I couldn’t help but feel like that chain of events was about to happen again; that I was given this wonderful two weeks of R&R, healthy eating and exercise to prepare me for the tough battle ahead. I knew that I had my six-week CT scan the day I returned and I tried to convince myself that the bloated feeling in my belly and my slight potbelly was just because I was getting strong again and gaining weight (I am back to 112 lbs…a full 15 lbs heaver than when I was at my low point which is great!) As my doctors have said all along, “You know your body better than anybody Jen, you’re often the first one to know that your tumors are growing before we even administer a scan.” Well, unfortunately they are right. My tests showed that although my heart is handling the toxic chemo amazingly well, it doesn’t matter because this chemo regimen is no longer working. After a few months of miraculous results, my tumor cells seem to have become resistant to the chemotherapy and we need to find another treatment plan. It’s really ironic given that the last month I increased my exercise routine, enhanced the ability to control my stress levels and more strictly followed the anti-cancer diet that I am subscribing to. Well, we’ve all known that this disease doesn’t discriminate. And it would be wrong to say that Dave and I were not fully aware that this moment would come at some point. Yes, we believe in miracles, but given my medical history we knew that the chemo would likely only work for so long and we would have to try something else. We are consulting with the best doctors in NY, Chicago and Boston and we will hopefully have a plan in place by next week. It never gets easy hearing the best in the business tell you that “you’re in a very tough spot” and “at this point we are grasping at straws”. That being said, we do believe in miracles. Given this medical setback, we are handling things as best as we can. There were two moments during the meeting with my Doctor that I had a hard time containing my emotions:

The first was when my Doctor gave me a huge hug and said that he didn’t sleep last night because he was so sad that he had to deliver this news to me and he was thinking of what treatments we might be able to try. I love my doctor very much (as a person and as a doctor) and it is hard to hear someone you respect so much tell you how sad he is about this latest news.

The other was when we started to discuss various medical options and Dave pulled out extensive files that he had created that summarized all of the research he has been doing over the past 5 months. While I often find that I can’t take on more than what’s right in front of me, I am extremely grateful that I have a caregiver who has the foresight, focus and skill to research the road ahead. I was overcome with love for Dave and for all that he has done to try to buy me more time.

Dave and I make a point of not outwardly showing our emotions at the clinic. We do this because we have no idea what news other patients are getting and we are respectful of their feelings. Celebrating or showing sadness are not responsible behaviors when there are so many others there. Dave looked at me at the end of the meeting and said, “How are you doing?” and I said, “I don’t want to cry until we get out of the office”. The minute we left the office, tears started pouring down my face. I was, and continue to be filled with sadness, anger and frustration. This disease truly doesn’t discriminate and I feel like I have done everything within my power to heal myself. And I’m not sure if it matters anymore. Please don’t take this as any sign that we are giving up…I NEVER WILL. It’s just that it’s hard when you feel that your prayers are not being answered. As in the past, I often need a few days or a week to grieve and then I am prepared for the battle ahead. This is the hardest part because we don’t yet have a plan in place. Hopefully we will shortly and I will share what I know with you. For now, we are trying to use our experience over the past year to inform what might be ahead rather than dictate what will be. I am terrified to start feeling like I did a few months ago when I was in so much pain that I couldn’t walk, couldn’t eat and couldn’t sleep. We are truly hoping that we don’t get to that place again and that there will be another option that will help me. Please understand that we don’t feel like talking because we are drained and there’s really nothing to say. We appreciate, as always, your responses to my blog, emails and voicemails. Thank you. We ask that you continue to help us keep life “normal”. If we need your help with something, please know we will ask. For now, we just need your well wishes, prayers and support. I am hoping that the fact that we found out this news right before the Jewish holiday of Passover bears some significance. A friend of mine wrote to me and said, “It's not that I'm so religious, but I was literally at a text study last night about Passover and the plague of darkness came up. It was interesting to me that night comes before day (as all Jewish holidays start in the evening). In fact, in order for their to be light (or for us to feel the light within each of us) you must begin in a place of darkness. It is only through despair that real freedom presents itself and so in the spirit of Pesach, may this darkness (the bad news you recently received) be brief and give way to the freedom you deserve (free from this cancer that is literally plaguing you!).” I am not religious either but I liked that analogy. Please encourage people to sign up and read my blog. I have added automatic updates to my blog so now you will receive an email when I write a new blog entry and can opt in if you’d like to. I thought I would close with the imagery that keeps on popping into my head this weekend. In 1980, Team USA does the improbable and beats the mighty Russians in the hockey semifinal of the Lake Placid Olympics. Al Michaels makes one of the most famous sporting calls ever to end the game. Dave and I believe in miracles and we know all of you do too. '