Jennifer Goodman Linn You Fearless

Back from Basel and Making the Most of It

Wow, has it been a week.

I am going through so many feelings and emotions that there are many times that I wish I had time to sit down and write this earlier. First, let me address two things that my “avid” fan base has been asking about!

  • Dave was NOT naked as he floated down the Rhine (maybe I should be asking why so many of you are curious!?!?). Many people show up wearing bathing suits or athletic shorts and just put the rest of their clothing in the orange bag. Dave did however see two 70-year old men have a merry old time sunbathing naked on the way down so I guess anything goes!
  • Although my diet restricted me from indulging, the chocolate in Switzerland looked fantastic and Dave served as a good taste tester to many of the flavors. Many brands were those you have seen in the states like Toblerone or Lindt but Dave and I did find this store called Laderach that sold over 20 different types of unique “barks” of chocolate that was so unique. Dave’s favorite was a white chocolate infused with blackberry and strawberry. I was jealous I could not partake.

Now on to the rest of the week…

My treatment ended on Wednesday uneventfully. The Dr. said that the scans revealed that my body did experience some “uptake” of the radioactive shot and it seemed like it was positively dispersed throughout my belly which is good. However, the uptake was not “off the charts” (which we knew was likely). We are scheduled to go back in 8 weeks for treatment #2 provided I start to feel better, my blood work and platelet levels bounce back (this treatment is very toxic and takes time) and the scans I most likely will get in 4 weeks show some signs of improvement.

I had underestimated how lonely it was to be partially quarantined for 3 days and to be isolated from people. I had a bit of “cabin fever” by the end of treatment and was a bit depressed and couldn’t wait to leave.

The next few days we spent recovering and seeing good friends Nick and Erica who visited from Milan. We also went to the oldest zoo in Switzerland which was really wonderful (who knew a small zoo could have almost every animal imaginable like bears, kangaroos, lions, cheetahs and elephants).

I have a beautiful story I want to share: Dave and I left the zoo and there was a fairly steep, long hill we had to climb to get to the tram station. I looked at Dave and we both knew that it would take me way too much effort to make it. So, we started to look for a cab. A man named Christopher picked us up. He was very exuberant and thought I needed to go to the hospital to have a baby (lovely). We explained our situation to him and not only did he drive us back to the hotel at no cost, he drove us to the airport the next day and refused to take a tip. He gave us his card and email and encouraged us to please reach out to him when we were back and he would escort us anywhere we needed to go. A great example of how a small act of kindness on his part, went such a long way in lifting our spirits. Pay it forward people!

Although we did get around a bit, it took some time to get my pain management under control and I had a fairly miserable few days. There were moments when I was in really poor spirits. We increased my pain dosage and I started to feel much better. Unfortunately however, the pain meds dull the swelling but don’t eliminate it and it was very hard for me to get around.

I had a fair amount of anxiety flying home because I was concerned the plane pressure would produce even more swelling and discomfort. I took a lot of painkillers and we ordered wheelchairs to take me to our transfers in Heathrow and to pick me up when we arrived in JFK. Although it made me very sad to have to be in a wheelchair, it made all of the difference. With the exception of having a bit of a “detour” when I set off the custom’s officers devices for being radioactive, we made it home in good shape.

The past few days have been spent wrapping up loose ends and trying to make the house as comfortable for me as possible. We have someone helping to install bathroom bars to help get me in and out of the shower and we are considering getting a hospital bed installed in our bedroom so that it is easy for me to keep my legs elevated and my back comfortable when I sleep at night.

Because I am carrying so much weight, it is very hard to lift my legs more than a few inches so we are back to having Dave help dress me in the mornings. I remain very focused on ridding myself of this disease. And, as a typically very active person, I can’t tell you how hard it is for me to see my body physically degenerate like this so quickly. There are moments when I start crying because I am just so aggravated that I can’t do things on my own and I need someone’s help to do simple tasks.

We saw a miracle happen this past winter and we are just hoping for another one.

Because I know that whoever reads this blog really cares about me and making me feel good and keeping my spirits high, I just wanted to share a few quick things with you.

Many of these were in The The New York Times article my friend published a few weeks ago or I have brought them up in the past but I wanted to summarize again.

  • Telling me “I look so good” doesn’t make me feel better. Let’s be clear: I know I look good. I am fortunate in that I am not one of those people who gets very pale when I am sick and I spend time and energy trying to put on make-up and get dressed in today’s styles because it makes me feel good. However, looking good has NOTHING to do with my medical odds or my ability to get better. So, when you say this to me, it comes across as a shallow, vanity comment that is truly irrelevant to the severity of my situation at hand. Perhaps it consoles you (“if she looks good, she can’t be that sick”) but it does nothing for me. So, let’s agree that I look good and move on.
  • Just as I don’t want to surround myself with Debbie Downers, I also don’t want to be around Debbie Uppers. What do I mean by this? Over the years so many people have said things to me like, “Don’t worry you’ll be OK,” or “With your positive energy, I have no doubt you’ll beat this thing”. Well, unless you have a crystal ball, please stop saying these empty platitudes. We all know this disease is random and that although being an advocate for your disease helps, you can never guarantee what will happen. Again, if you need to tell yourself this to make you feel better about my odds, then do it in the privacy of your own thoughts. When you’re with me, please just be a good listener and help me absorb the reality of the situation while understanding that I am not giving up.

Thanks as always for your love