Hoping for a Home Run
Hi everyone. We’ll do our best to keep this short and sweet, yet informative.
Given my distended belly and back pain, it has been very hard to sit at the computer for very long. You probably noticed that I haven’t returned many emails or written lately in my blog.
The past week has been extremely trying for us. We have been at the hospital almost every day treating intense pain, getting blood transfusions, administering drugs to build up my blood deficiencies, and managing fevers. The tumors are pushing on many of my organs causing me to have severe back pains, stomach distension and significant water retention (I haven’t weighed this much since putting on my Freshman 15 at Duke!)
Trying to find some humor amongst all of this pain, we joked that this was the week that everything really had fallen apart; our oncologist caught pneumonia, our toilet broke and our cleaning lady quit with no prior notice. When it rains it pours (and it has been raining a lot which is supposed to be good luck!.
Given the pain and discomfort, it was frustrating but not surprising to hear that my tumors have grown dramatically since surgery. The first drug in the 1-2 punch of this new medical trial doesn’t seem to be doing the trick on its own, but we’re hoping to keep the symptoms in check so I can start the 2nd drug this Tuesday.
The doctor said that at this point we’re looking for a “home run.” If the 2nd drug doesn’t provide it, we’re considering a toxic chemotherapy agent that seemed to help me 5 years ago, and we’re also looking into other experimental trials. So the two things that we need now are for my symptoms to stay in check so that I can get by day-to-day and for the 2nd drug (or something else) to halt the growth of these tumors. Both are critically important.
As we have at other times when the going gets rough, we outlined some “rules of the road.” We do so not to be difficult, but rather because people say they find it helpful. We know you all want what’s best for us so hopefully this will help.
Feel Free to Send Well Wishes but Don’t Expect Us to Take You up on a Visit Request or Return a Call.
We love getting everything you’ve been sending – emails and calls with positive thoughts, photo of your family with a Go Jen sign, powerpoint slide with a message from your baby, pictures drawn by your kids, funny stories, songs, and everything else! However, please understand that we’d love to respond to all of them, but we likely won’t be able to do so. My pain changes on an hourly basis so to commit to a visit is actually very stressful because I never know how I am going to feel (you have no idea how frustrating this is for me). When and if I am up to it, I will reach out and invite you over. Please don’t take it personally and interpret that as I don’t want to see you. The best communications by far are when folks just sent a sweet note or voicemail and make it clear that they are thinkng of us and absolutely are not expecting or want a call back.
If You Don’t Hear Back from Me, Please Refrain from Immediately Contacting Dave for an Update.
In addition to attending my Dr’s appointments with me and helping take care of me, Dave is also researching other medical options. Needless to say, he is swamped. He loves hearing from you as well, but please don’t expect a response back if you reach out.
Don’t Ask What You Can Do, Just Do.
Many of you have offered to help us if we need anything, which we appreciate. But we’re lucky in that we currently have things under control and don’t really need anything (we actually look forward to some of the basic chores such as taking a short walk together to Whole Foods).
We have always tried to make it very clear that by far, the best way to be supportive is to register teams, raise money, and spread the word about Cycle for Survival (www.cycleforsurvival.org). Of course, this is not just about us – the latest statistics show that 1 out of every 2 men and 1 out of every 3 women will get cancer at some point in their lives. It’s very simple, we need to find more treatment options!
Registration for the Feb 2011 events just opened on the website so the time is now. In past years, we and the Cycle team had to take time out of our day to follow-up with many of you to remind you to register. Why not make it different this year and take the 5 minutes to proactively go to the site to sign-up your team now?
Before sending us an email saying you’re there if we need anything, please take a step back and think….Have I registered a team? Have I also organized a company team with my co-workers? Have I checked to see if my company would make a donation or match donations? What else can I do to spread the word? Remember, anyone can join the ride even if you’ve never been on a spinning bike!
I check out the list of teams almost every day, and it makes me so happy. We already have almost 100 teams signed up, which is a great start. If everyone committed to bringing in one more team this year, we’ll sell-out the 850+ teams in record time!
Please Don’t Mistake the Seriousness of this Email as a Sign of Defeat.
I am more committed than ever to beat this disease. Although we are in a tough spot, Dave and I are as optimistic as ever that the second drug, another chemo agent, or a different trial will be the “home run” we need. We are exhausted and drained, but still hopeful. Please join us by being optimistic yet realistic about the situation (a cheerleader jumping up & down screaming "I just know this treatment is going to work!" would not feel quite right to us; nor would a Debbie Downer who only sees death as an option). We are living the only way we know how to do so fearlessly - day by day.
Sorry that we don’t have better news to share, but hopefully we will in the future.
The one bright note of the past week was the visit of Dave’s brother Eric, wife Missy, and nieces Samantha and Ally. Although the timing was not perfect and I didn’t get to spend nearly as much time with them as I would have hoped, they gave me energy and put a smile on my face. Enjoy these great pictures from our travels around NYC last week! - Jen and Dave