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!!!!!
Wendy, So good to hear the good news. Amazing meds are out there that are changing lives, and I am thankful that you have one for YOU. Thank you for sharing ALL of your travels with us, as we have seen some very beautiful ocean, and shore through your sweet photo’s. Love all the cats pics too. You are though of often. May your new journey take you to more wonderful places. Please send us your up dates. Where is the boat docked. Sweet Blessing to you Wendy. You are an amazing lady. You are on the right side of the boat. Top row, with the blue shorts. hahaha! What a great photo. Memories forever.
Glad things have finally turned around for you. Love getting your blogs. We moved off Manta in October. Our son needed an investment and so we are his renters in a 3 bedroom condo in east Ventura. You will love having a real bed, your own bathroom, etc. Vickie
WendyYou are a strong person. I always looked up to you. (not because I’am short) but that you had the ability and courage to sail. You are going to beat this. Yes you are going to have DID days (down in the dumbs) but you are not one to stay down. Hang in there and keep fighting. If there is any thing I can do for you Email me email@example.com or phone 213-509-1404.
Glad to hear CoH has found a drug that is working for you. That’s great news. You are an amazingly strong woman. Continues prayers for you.
Great to hear things are looking up for you Wendy. Too bad about selling the boat, I know how much you loved it. Welcome to life on the dry side.
Glad to heart hints are looking a little brighter! Good luck. If their is anything I can do please let me know.
You are one of the most wonderful people I have ever know. Words can’t say how sad and angry I am that you have all this shit to put up with, and how happy I am that you can still smile in spite of it. I think of you often and hope and pray that the future will bring you more of the good things and happiness you deserve.
Dear Wendy, Congratulations on your good progress with City of Hope and on your decision about Willow. Eric and I will always remember you as Wendy-On-Willow. Always.
Wendy, I’m very glad to hear of your improving treatment and condition. That is great news. I’m sorry about Willow, that must be such a hard thing. Please know that you are in my thoughts, and that I toast you whenever I am in sunny La Paz (just got back). Keep the good news coming!
Tony was able to forward your blog to me. I am reading it and see your courage. I feel I can touch a small part of your pain. I know YOU WILL BEAT this with your courage, intelligence, and spirit. Your Spirit is amazing. You are a light and an inspiration to me and I am sure so many others. Know that you are in my thoughts and prayers daily and your spirit touches my spirit all the time. Change is scary, God works in ways we do not understand and that is what builds our faith and grows our trust. Letting go and Letting God and getting out of our own way is certainly, I think our most difficult lesson, but when learned life becomes so much easier. I am sending my love to you and know our memories of the past and your spirit are ALWAYS with me, you are such a part of who I am. Love, Diane
God bless you Wendy. May I come visit you?
Wendy, it is good to see some sun on your cloudy days, Ray
Hi dear Wendy, Greg and I are praying a heartfelt thanksgiving that you are getting good results of the new medication and also that you adjust to the shore life with ease.
You have touched our lives in a beautiful way and are grateful to know you.
Reading your letters is hearing your voice describing for the world in a way that puts the listener right in the story there with you. Thank you so much!
If there is anything you need let us know, we love you.
Tina and Greg
Hi Wendy. Please call me. 949 -632-5363. I have some ideas and can help.
Gooday from Australia from your favourite Kiwi. Am in far north Queensland between the rain forest and the reef. Boatless unfortunately but not jobless. I’ll crack a cold one for you. My thoughts and prayers are with you. I hear John has a job on some cruise liner, probably auditioned for the evening entertainment as a pirate. Heres to some wonderful dock parties in the future.