Update in Public

So many things

The brain surgery was pretty easy all things considered. We didn’t end up staying in Miami for the full length of our AirBnB stay because it was not a comfortable, healing, home. We did get a partial refund which is nice. I felt guilty leaving before the end of our paid stay but honestly, there was nowhere to get situated and just heal.

At my post-op appointment the doctor said I needed to get radiation therapy because while he had good margins the pituitary region and especially the optic chiasm was a “sticky” area and there was likely residual cells left over because he didn’t want to chance blinding me. They suggested someone here in PSL but that guy said he thought I needed proton therapy, not photon and sent me to South Florida Proton Therapy Institute, 75 minutes away.

The radiation oncologist at SFPTI said no way was she going to do proton beam on my optic chiasm and we went with photon instead. Could I have gone back to the first doctor? Yes. Was the female from SFPTI a doctor who learned at Sloane Kettering? Yes. Also, she took the time to explain everything to me. So, we went with the farther location.

28 days, Monday through Friday, 3 hours round trip, approximately 800 miles a week. My sister and her man and her boys came down during the week of my birthday to help with the driving. Liam took us all to Cabana Bay/Volcano Bay for the first weekend that they were here. It was nice to relax with Lauren. He also took us all to The Melting Pot. Sadly, because I was (and still am not) in great shape post-op he had to push me back from Volcano Bay to the hotel, Cabana Bay, in a wheel chair. It wasn’t particularly far but I felt so embarrassed.

Lauren drove me to and from radiation that week and when they left on Saturday my parents flew in. Lauren, Zach and the boys left my car at the airport and my parents brought it home the next day.

Dad drove me every day to radiation and back. Mom came a few times but mostly stayed home since the actual treatment time was only about 15 minutes. She did make sure to attend my endocrinologist appointment though. He’s a new doctor for me and while Mom liked him I’m not sold yet. He wanted me to start human growth hormone but Cigna won’t cover it. Honestly, I’m not sure I want to take it, so I haven’t started the appeals process.

Mom and Dad left on the 27th and Liam kind of took over driving me. I was mostly fine to drive myself, the doctors didn’t place any restrictions on me, it was just tiring. I started back to work on the 5th and was working then driving to Delray Beach for therapy. Friday the 9th I rang the bell signifying my completion of therapy and on Monday the 12th the kiddos started back to school.

Now we’re starting our third week together, tomorrow, and I am exhausted. I’m overly tired thanks to radiation fatigue and 115 6th graders. I am also short of breath and sweat like it’s not one’s business. I’m weepy and cranky. I felt better during radiation than I feel since stopping. The rad onc doctors assure me that the symptoms will get better over time but I don’t see any end in sight.

Regardless, life goes on. Liam booked us into some resort on Jamaica for this coming weekend. To celebrate our 15th wedding anniversary. I can’t hardly believe it’s been that long. He’s really been such a sweetheart over the last several years. I can’t believe he’s still hanging around considering how unwell and unwhole I’ve been. For example, I went to bed yesterday at 445 and now I’m in bed at 6.

I did manage to get most of the laundry under control today and I even prepped some food for the week. I’m taking off Friday so we can fly out and enjoy the long weekend so I only needed a few meals to get me through.