MARCH 20, 2018
This was supposed to be a rest day and it sure was.
Woke up with no chemo in the plans feeling not too bad after my three days of fludarabine and cyclophosphamide to get rid of my natural T cells to make room for the re-engineered T cell.
We planned to go for a “forest bath” on the Bloedel Reserve on Bainbridge Island while my blood counts were still OK enough for me to travel (YEAH!), but as the morning wore on I got sicker and sicker and even a 35-minute ferry ride back and forth seemed too much of a challenge for my queasy stomach and unpredictable gut.
Instead, I slept all day, ate little other than some ginger tea with honey, and then late in the evening, Patty again forced me to get out of the “house”, and walk by the water near our Residence Inn and window shop the million dollar yachts and old historic wooden boats including the only surviving lighthouse boat in Washington State. Patty has her eye on one yatch for 2 million with 3 staterooms and one for the crew. But first she has to win the lottery.
Unfortunately, I felt worse after walking, but when back at the hotel I took ½ of a 0.5 lorazepam and while that made me even more sleepy, it allowed me to stomach some much needed soup and cooked asparagus.
I am a total wimp when it comes to sedating drugs so I try to avoid them, but I also have to eat. I don’t like the way downers make me feel. I so define myself by my intellectual agility and I don’t want to lose any spring in my game. However, nausea is hardly conductive to deep analytic thought, so I made my choice.
I wrote this with my eyes droopy from the touch of a benzodiazepine in my system. You tell me if it’s coherent.
But first I am going to sleep.
Stay strong- I keep saying that tom y sleepy nauseated self.
We are all in this together.
Yes, you were coherent. Your intellectual agility powered through the lorazepam. Everyone is sending positive vibes your way for the big day.
Just watched this video: “CLL and nutrition” – for when on treatment and not. Maybe something for Patty to help pass the time.
Dear Brian —
I so admire your bravery. I pray for you every day and wish you a complete recovery (refuah shlema)!!!!
Brian….At 53, I was diagnosed with CLL 17p in September of 2016 and went on Ibrutinib in Oct 2016. My labs continue to improve but I’m scared I’ll get resistant. I hope to get 69 months like you did. Maybe in 6 years there will be a cure. I have you in my prayers. The Mariners first home game is against the Indians on the 29th. Baseball has always been a pretty lucky diversion for me. Maybe you can get out to a game or two.
Your mental acuity is right on – hope you awake free from that miserable nausea – few things are worse than that. I close my day with prayers for you and for the success of this journey you are taking – not just for you but for all of us. Since I am a caregiver, my thoughts and prayers also go out to Patty – nothing is more difficult than to see someone you love suffer – been there, done that so I understand. I also understand the bond that forms when two people go through this kind of thing – God bless you both.
I am surprised that you could even walk around. You mentioned Bloedel Reserve. They have a program going on for people with illnesses like cancer and it’s called the Strollers program. They are so kind to give free 6 month admission to the people that sign up for it and they give them a book that normally cost $40. They limit the amount of people that can come into each seasonal group. The book shows the map of the many trails there. It is divided into 12 chapters with mindfulness readings that can go with each of the trails. Even though you cannot be part of the program, if you do go over there after treatment you might ask if you could purchase the book to use while on some of the walks that you could take while there. Because, you will be well enough on the other side of this treatment for the trails. They are not difficult trails, and they are certainly beautiful. Stay strong, as you say, and thank you for your contribution benefiting all of us.
Big day tomorrow. Thinking good thoughts. You’ve got this!