Jennifer Goodman Linn You Fearless

Rolling with the Punches (and the Swelling)

This week has been a very challenging one for me physically. The swelling continues to intensify and I am having a very hard time getting around. I have gained about 18 pounds of water weight in the last two weeks. I am in a fair amount of discomfort and have started on a pain management plan that is helping out a lot.

While we were really hoping that this Boston trial was going to do wonders, and we also understood that it might take at least a few weeks to see any results, Dave and I were having a hard time believing that it was helping at all given my debilitated state.

We spoke with my doctor in Boston and visited MSKCC yesterday and everyone confirmed that we needed to try something else rather than continue with this trial (at least for now).

For a while we have been optimistic about a treatment therapy in Switzerland and the Netherlands that is only available in trial form in the United States. Given that the demand is high and the facilities are small, we had locked in a July 18th start date in case the Boston trial didn’t work.

Unfortunately the facilities wouldn’t budge on moving this date. So, we spent a lot of time at MSKCC yesterday discussing “What do we do for the next 3.5 weeks to keep Jen comfortable and to keep the tumors at bay until we can get her to Switzerland?” None of the options were very promising at all.

So, I took it as a true blessing when I was awoken at 3AM this morning with a call from Basel, Switzerland telling us that an opening became available for this coming Monday (for the first time, I’m happy that Dave and I hadn’t turned our phones off).

So, we are off to Switzerland tomorrow evening for a week and will return during the July 4th weekend. To greatly summarize the procedure, it delivers radioactive treatment through your vein directly to certain receptors for which my tumor has tested positive.

We are optimistic about this. And frankly, we are too tired and too busy trying to book flights, get hotels and pack to think about anything.

I will be in the hospital in Basel for about 3 days and then spend a few days recuperating in the hotel before we head home. It is a long-acting treatment so if my tumor responds to it, it will require us to return about every 10 weeks. We will do scans in NY to monitor things in the meantime.

When we weren’t busy dealing with my health this week, we did manage to have a few special moments. I had a wonderful dinner with my close friends from Harvard Business School who were in my study group. Dave and I also had a fantastic dinner with our friends Katie and Zeev.

Please continue to think positive thoughts for us. We are in a very tough situation and now, more than ever, we need another miracle like we had this past winter.

I will plan on updating my blog in Switzerland and please post on my blog as it will be nice to hear thoughts from “across the pond.” And emails are great just please don't expect a response.  I have no idea what type of side effects will accompany this latest treatment.  

Dave and I will be using this blog as the focal point of all communication going forward so please, if you haven't already done so, click on the purple "box" at the top of the blog page and follow the procedure that will make sure you receive an auto-alert every time we write a new post (you will need to respond to a confirmation email in order to know that your enrollment was successful). 

Thanks and love to you all.