Jennifer Goodman Linn You Fearless

Making the Most of Beantown

Dave and I decided to start the clinical trial in Boston through Dana Farber Cancer Center. We went up on Tuesday and just returned late last night. I was very concerned leading up to our trip because my bloodwork had to hit certain criteria and it was borderline. Given how few options we have left to try, I would have been devastated if we were not able to take advantage of this trial. Thankfully, they got back in line by the time we arrived in Boston and we were approved for the trial on Wednesday morning. I will still need to be approved every 3 weeks but I was thrilled to be able to start on the earliest day possible (3 weeks post my last regimen).

Dana Farber is a beautiful cancer facility and although it’s a bit inconvenient to travel the 4 hours every 3 weeks, it is a small price to pay if this drug works. The trial I am on is a 24 hour chemo infusion. They connect the chemo drug through my port (located on my chest) and I leave with a “shoulder bag” device that delivers the chemo continuously for 24 hours. I sleep with it, eat with…only thing I can't do is get it wet. It's kind of like that "egg" that you had to carry around in high school sex-ed class for a few days and you really couldn't wait to get rid of it. We go home and the next day, I have the device removed at Memorial Sloan-Kettering in NY and shipped back to Boston.

So, going forward, we won’t have to be in Boston for more than 1 night every 3 weeks unless we choose to stay for longer. The Dana Farber folks could not have made us feel more welcome. Sharon and Matt's brother Steve is a cardiologist at the sister medical center and he came to greet us at 7:30AM with deliciously decadent pastries (hey, it's OK to eat doughnuts if they are given to you by a cardiologist, right?) The sarcoma oncologist who is overseeing this trial, Dr. Andrew Wagner, has been a member of “Team Jen” for the past 6 months. We visited him this past winter when I was in bad shape and he helped develop the chemo plan that greatly improved my health from November-April. So, I like him!

And if you needed any more proof that social media is pervasive, Dr. Wagner told me that at least 3 people had forwarded him the “40th celebration” birthday video that I posted on my blog. I told him that if this drug worked (yondelis/trabectidin), I would make him his own celebration video. So, fingers crossed, I get to make a fool of myself in the coming weeks!

Dave and I are feeling very good about this treatment. We finally got a car a few weeks ago (can you believe that I have never owned a car in all of my 40 years?!?) and that provides great flexibility for us to drive back and forth to Boston. And we heard some great songs on the radio that we believe were good omens for my tumors – in particular, Queen’s Another One Bites the Dust!  Take that tumors!

The great thing about Boston is that we have near and dear friends who live there. Dave and I were determined to make this trip more of an adventure/vacation than a medical burden. We could not believe that with only a three day notice, so many of our friends were able to find babysitters and juggle their busy calendars to meet us. On Wednesday night we had a really special dinner with the Northwestern gang and their significant others. Dave and I are constantly reminded of just how incredibly supportive and loving Dan, Sorrell, Sarah, Dave, Tom, Jen, Chris and Anne are. We were so, so happy to see you all! And on Thursday I got to have a special ladies' lunch with Michelle and Cindy who ALWAYS find the time to come see me when I am in Boston despite 6 kids between them! And a really nice perk was that Dave’s brother Eric was in town for a conference so we got to spend some time with him as well.

It was 97 degrees so I decided to stay at the hotel but Eric and Dave attended the Scooper Bowl, an annual ice-cream-a-thon that benefits The Jimmy Fund and Dana Farber Cancer Center. I sent them on their way telling them that they must eat a lot since that is where we are getting our trial. I think they did their part!

I am feeling OK. Unfortunately I feel like my tumors have grown this past week without chemo and my stomach has grown. Swelling has also become more of an issue this week. Two people congratulated me on being pregnant this week but I am taking it in stride (it’s not their fault, I do look about 4-5 months pregnant). I need to keep my legs elevated most of the day if I am not walking or doing some sort of activity to hope that it doesn’t get worse. Thank goodness for my zero-gravity chair!

The treatment went by without a hitch but I am told that the next week or so could be fairly tough. I am taking a lot of steroids and anti-nausea medicine so I’m warning you now…I might be cranky and aggressive! I apologize in advance.

As you know, the only way I know how to live is day by day. And that is what I am doing. Despite all of this medical annoyance, I am making great strides on my book, I Know You Mean Well BUT… and the pitch document should be ready in a few weeks to send to publishers and editors so please let me know if you know of anyone (but no literary agents please as I am trying to go solo on this).

I have posted two of my “mini chapters” on my WebMD blog and they are getting great response. Here are the links and please write a comment on WebMD if you like what you read!

And my friend Bruce Feiler who has a monthly column in the New York Times Styles Section wrote about my favorite topic and quoted me in his article. This will be in tomorrow’s paper so check it out.

I will write during the week. Fingers crossed for the Yondelis to work quickly and for my first few weeks on this treatment to be as gentle as possible!