It’s that time again, time for an update on what the heck is going on. But first, where the heck am I in the above photos? This was a really fun women’s sailing team I was invited to play on, and I had a great time. We basically got together once or twice a year for a number of years, with the primary goal of competing in the Women’s One Design National Championships held in Long Beach by Long Beach Yacht Club. We sailed the newer Catalina 37s, a flat decked shell of a boat that was pretty much designed specifically for LA/LB Inner Harbor by Catalina Yachts. LBYC has the only hulls of this design. The Congressional Cup is sailed in these boats. They’re pretty fun to sail, and we always had a great time. I think the best we did was a second or third overall. Fun times, and oh, so long ago…
Now, back to the future. The future is a bit brighter at the moment. City of Hope and my new trial medication are doing amazing things at the moment. Some of you may know I have chest tubes, one for each lung that I drain daily. When the Crizotinib was working, I would drain maybe 600cc from the right and 300cc from the left lung, the fluid coming from my general state of homeostasis. That means I was losing almost a liter a day of fluid, in addition to the normal methods of losing fluid from breathing and peeing. When the Crizotinib stopped working, my fluid production went up to 600cc on the left, and 1300cc on the right, and that’s alot of water! Yikes, we gotta slow this down! The fluid production was an indicator of the tumor’s increased activity, and this thing was running a marathon!
City of Hope’s Pulmonary Oncology Co-chair, Dr. Karen Reckamp, started me on a clinical trial with a new medication that’s effectiveness has been proven, but the dosage hadn’t been determined yet. So, I know I’m getting the drug, and we’re just playing with the dose. Initially I started 2 weeks ago on three pills a day, and did very well. I had been warned of some daunting side effects, but I didn’t have any and was grateful. The second week, my dose was doubled, and I feel it. If I pre-medicate with an anti-nausea drug, I do okay, and just feel ‘puny’ for a few hours. If I don’t, look out. Needless to say, I pre-medicate! My tumor seems to have settled down and the fluid production has essentially stopped (no fluid on the right and 300cc after 3-4 days on the left). My breathing has improved immensely, and I’m looking forward to some pulmonary physical therapy. Whodathunkit??? Maybe I’ll get on that standup board again soon…
The next bit of news I never thought I’d be writing. I’m swallowing the anchor, as they say. The boat has been very difficult for me to maintain, and those of you who know Willow, know she’s pretty small inside. Pack a hospital room worth of medical equipment and supplies in the salon, and she’s turned into packrat conditions. On a boat! I hate that she’s so stuffed with crap! I hate that I can’t maintain her in the manner she deserves! I need a place to put this crap, and I need to have Willow shine again. I’ll be moving into a nearby apartment on Valentine’s Day, and will be contracting out some paint and varnish work to some local BMWs. As soon as the work is done, Willow will be on the market, and I hope another sailor will buy her so they can continue to sail the dream. (I can’t believe it, but I’m choking up right now. Reality sucks…) Her systems are in fine condition, and she has many years of safe sailing in her. Additionally, since I’m fighting the City for work comp status for this illness, I’m currently financially responsible for my medical treatment. Yes, I have insurance, but the 20% I’m responsible for needs to hit 12K before I’m covered 100%. That’s alot of extra money for me, and the sale of Willow will be very helpful. It’s just time, you know?
I have lived on boats for over 30 years. My questions are amazing, and some people think I’ve been in jail. What’s a cable box, why do I need a router? I have not had a true bed for decades. Willow and her predecessors have given me years of fine times in the school of hard knocks (on the head, by the boom), and they have given me miles and miles of fine sailing in amazing locales, both near and far. I am truly thankful to have been able to live the life I did, albeit a bit different, and have the stories I have to tell. I’m one of the luckiest people in the world to have been able to just go and do the things I have done, and I’m grateful to know it. It’s time to let someone else live that life, and for me to make a left turn in traffic to the new route I’ve chosen to take.
Have fun Everybody, and keep doing good things! Much, much love, and best fishes!!!!!