Hi Everyone!
The sky has darkened with impending, much needed rain, and I spill coffee on my favorite sweatshirt. Nestled in front of the TV in my most comfy sweats and Uggs, all I need is a nice campfire. I realized it’s been a while since I wrote, so I figured it was time to catch up. I hope you all are enjoying this spring, dodging tornados in the Midwest and heavy rain in the South. Be careful out there, Everyone!
I have been doing well lately, up to about 3 weeks ago. My breathing has become difficult, much more difficult, and we’re not quite sure why. I had a new round of scans at the end of April, and they looked pretty good. No new tumor growth, lymph nodes have mostly gone back to normal, though I was starting to amass more fluid in the pleura. Was that the reason? I began to drain every other day but the amounts weren’t earth-shattering. I went on oxygen 24/7, and that helped. Then it wasn’t helping. I contacted my palliative care group, and they fine-tuned some of my medications and doses. That has helped about 80% of the time, with the worst time always at night. In the dark, the boogey-man of SOB really raises its ugly head. When that happens, I either take a hit of liquid morphine sublingually, or some Ativan. Either one works to gork me out pretty completely. When I regain consciousness, it takes a good 30-60 minutes to get my wits about me. Once I do, I am doing pretty well as long as I do things slowly. Initially hanging in at 2 lpm of O2, now I need 4-6 lpm depending on what I’m doing. I’ve been in contact with City of Hope, and they said I’m not making things easy for them. They said I’m not following the rules (Have they met me?), so it’s difficult to make predictions. The first medication I was on, crizotinib, only lasted about 6 weeks when it was hoped it would be effective for 8-12 months. The trial medication I’ve been on at CoH had such a spectacular effect on my tumor, everyone was excited. Has it stopped working? That’s the question for the moment. If that’s the case, I’ll start on traditional chemo in short order. Insurance has approved more scans for this coming Thursday, so I’ll know more by the end of the week. Understandably disappointed, I know others have had just as dramatically wonderful results, but theirs have proven to be much longer lived.
On a positive front, in the battle to have this illness deemed work related, I had the City mandated QME exam. My experience in this exam was not a positive one, as the physician was very condescending, arrogant and rude. I came away with a feeling of failure, sure the doctor would rule against me. I learned last week that he in fact ruled in my favor, 100%. Of course, the City is rejecting his finding, so we move on to the next step, depositions. I’m scheduled to be deposed by the City at the end of June. My lawyer is optimistic about our chances, and says there are many eyes on this case. Hopefully, we’ll have a decision soon. We just need to get past the hoop-jumping…
The sky has darkened further, and the wind sets my chimes to ringing constantly and bright. The patio window is open so the breeze hits my face, chilling the tip of my nose. My cat comes out of her closet hideaway, yowling for attention. She enjoys watching the shapes move around on the TV screen, intent on the activity.
She’s now trying to shove the laptop away so she can curl up on my lap, so this update is about over.
I hope you all continue to do good things and take good care of each other. Always remember, I love you all.
wendyonwillow 
Thanks for the update Wendy. I always hope for the best for you and you are in my prayers.
Dennis
Wendy, you hang in there. It must be frustrating to battle the City while battling the tumor. Hopefully, you will have the work-related issue resolved soon. If you start to feel a bit sporty, I will save room for you when I do the Bash in June. :). Remember that you have a lot of people supporting you, so you are not alone in this.
As always, you have my support and admiration. I will toast you in sunny La Paz in about a week.
Cheers, Bill
S/V Odyssey
Wendy,
We love getting your updates on your health as you battle this horrible disease. You have always been a strong person, with a fantastic upbeat attitude about life and a heart of gold. The day we ran into you on the dock in Ventura a few years ago you made us feel like it was just yesterday when we saw you last when in reality it had been several years. That’s the Wendy “heart of gold”. Don’t lose your great positive attitude and know that we and a zillion more are always thinking about you and praying for your good health. Cheers!
Love you, Glenn & Joan😃🍻🏄🏼🇺🇸 ⛵️
Wendy, as I keep saying-one day at a time. Tony was up from Mexico and we wanted to come see you. I know your street, but not you address. Would love to catch you on the dock to say hello. Hang in there.—Ray
Remember our love and thoughts are with you
We love you too Wendy. Keep the faith. I was happy to hear you are at COH. Thank you for sharing your journey with us. Just know our hearts are with you.
Tom
Hey Wendy,
Guess who missed being on the water so much he drove his ride on mower into the complex swimming pool. Morale of the story is “Ride on lawn mowers do not make good jet ski’s.”
Couldn’t take any photos of the incident as my phone was on my pocket ! iPhones and salt water do not mix very well. All the grass clippings from 2 collection bags floated to the surface and covered the entire pool. I haven’t laughed so much in years. I had to rebuild the entire engine of the mower and it still sounds terrible, so I invested in a pair of ear defenders, now the engine sounds a lot better. Don’t think living on dry land suits me, too many things to bump into.
Keep the barnacles facing downwards……………………….fair winds my friend
Kiwi Kev.
Wendy, as always we love to hear from you. I am sitting on the patio of the house I am taking care of here on the East Cape. Your description of your weather is exactly how it is this morning. I think of you often. Glad we were able to get together that time in La Paz, Keep up the good fight.
Your friend, Bruce
Wendy,
Love the description of the wea
ther – I am going to put lots of positive vibes out for you on Thursday. Good luck –
Love
Ellen
Love you partner. You keep that boogey man at bay for crying out loud, don’t he know how feel about calls after midnight. 😉 Absitively posolutely praying for you!
Love to you too Wendy 🙂 We are keeping you in our prayers. From Vaughn and Luanne
Dearest Wendy, we are grateful for you in our lives. Our daily prayers have you in focus for your hearts desire. Thank you for sharing your life with us. Remember that we are available 24/7 for you. You are loved,
Sent from my Verizon Wireless 4G LTE smartphone
Hi Wendy,
I hope you are feeling a little better. You are the strongest person I know.
You are constantly in my prayers and I’m sorry the City is being such a $/&@-!!!! Keep strong my friend!! Love ya,
Antoinette❤️