Monthly Archives: November 2014

Moving Along…


Hi Everyone!

The sun is shining, the breeze is breezing, and it’s a typical Southern California, late November, Santa Ana-y day. In other words, absolutely beautiful. I’ve been feeling pretty sporty the last two weeks, and I owe it all to you! The phone calls, visits, texts, emails and blog comments are so very uplifting to me, and I love each and every one. Thank you! Thank you! Thank you! I have increased my walking distance daily, and that feels good. For those power walkers thinking in terms of miles, hah!!! I’m talking in terms of feet and yards! It’s all good though, because I can really see an increase in distance on a steady basis. I’m tempted to do the Turkey Trot 10K tomorrow here in Dana Point. Really, okay, not really…

My physical strength and endurance grow daily, and of that, I am grateful. I’m not ready to just lay down in bed. I’m able to do a little more here on Willow, like stay ahead of some of my daily chores. I am impressed at how low this illness can take you. I am equally impressed that I’m slowly rising above those low depths and moving on up the line. Mark, a friend from the fire department, paddled by one day. He came aboard and we must’ve sat and talked for at least 4 hours. We made overly optimistic plans to do an early morning SUP paddle in a day or two. Uh, I had to cancel that one. What in the heck was I thinking? BUT! Give me a couple of more weeks of feeling like this, and maybe a short, slow paddle could be an incredible Christmas present to me!!!

I’ve been gardening, meeting with lots of friends for lunch, taking care of appointments and errands, and generally just hanging in there. I don’t do dinners because it’s dark by five o’clock. And dark means bedtime. I know, such a dork… Sitting down below on Willow all day long is one of the worst things I could do. I need the sunshine. I need the people, the conversation, or just plain outdoors. One of the more fun things to do is to listen in on some conversations. At one local beach, I was listening to one homeless man instruct the other that the bible “tells us to beat and murder women.” He was adamant, and apparently, was quoting specific verses, though I can tell you, the nuns never taught me that one! It must be in the (very) Old Testament. At another spot, I heard a man convincingly tell another that Costa Rica is a sovereign state belonging to the United States, and that’s why gringos can own property there. That one I had to look up, and the man had the info half correct. Costa Rica is a sovereign state, but it doesn’t belong to anyone. It’s a member of a Caribbean group, and that’s about it. I’ve listened to my boat neighbor talking about Mexico in ways and in terms I’ve never heard, and none of it was good. I won’t even comment on my participation on a board of directors of a nearby mobile home park. What I hear at those meetings is mind-boggling to me. All of this makes me remain grateful for having a working brain, and the ability to listen to some of the common sense it bombards me with. Note to self: Not only do you have to take care of your body, but your brain’s pretty dang important, too! I’m happy to have its capabilities, and will try to heed its warnings!

That said, I hope you all have a very Happy and Blessed Thanksgiving! For those of you working the holiday, I’m grateful to you, and may the leftovers be plenty, and the creamed turkey on puff pastry be just as good as Mom used to make!

Best Fishes!

The California Riviera

The California Riviera

I’m sitting aboard Willow, feet up, computer on my lap, cannula prongs making my nose itch, and I wonder what to write. With this blogging stuff, sometimes it’s difficult to figure out. You may become inspired, but in my case, it’s usually at the wrong time when I’m doing something else, and then I forget the inspiring theme. I look to my friends’ blogs, usually voyaging themed, and find I lose myself for hours imagining the places they’ve been and things and people they’ve seen. I’d counter with a similar type entry, detailing my latest passage, repair, or cat-wrangling story. No more passage-making or repairs, and the cats are enjoying the leisure life at Mom’s.

The last week or two have been very difficult for me. I really thought about not writing about it, but then I figured, what the hell? I’ve read about so and so’s courageous battle or graceful journey against or through cancer. I absolutely cannot speak for anyone else, but I see nothing courageous or graceful about it. Cancer absolutely sucks. I am scared spitless (insert sound alike word here) of what the future holds. I have had so much trouble breathing, and it wasn’t really bad, that when it does get bad, what is THAT gonna be like? I have termed it the ‘drowning fish’ and I want no part of it. The body part affected most right now are my lungs, which I use only about 5-6 thousand times a day. Now that use is very conscious to me. When it’s a bad breathing day, I am aware of the effort for every single breath. Put a cold on top of that, and it’s downright exhausting. Last week, I caught a cold, and was laid flat. Tired, with nothing else on the list but taking the next rattling breath, I found myself in quite a rut. Family and friends reached out, but I just couldn’t grab their hands. Fully aware that I need to take those hands, I continued denying their reach.

Friday, I finally went out and met with Mom. She needed some cooking items, so we went out looking for them. It was good to be out and about. Saturday, Missy and Andrew had me up for dinner. After a great meal, it was good visiting and talking with them. They both came down to Willow Sunday morning to help with some chores. That afternoon, Sally drove down from Ventura to visit, and it was GOOD. We spent the afternoon at Aliso Creek Beach, sitting in the sun, enjoying a shaved ice, and walking slowly on the beach and walkway. It was so good for me to get out amongst the living; watching small toddlers chasing seagulls and pigeons, listening to the screams as swimmers jumped in the very short, steep, and cold waves, seeing whales blow offshore and watching boats and paddlers make their way along the coast. Life goes on, and always will. My little stay here is just a tiny blip, but what a stay it’s been!

I’m getting out of the rut with help and moving on to whatever’s next. This morning I woke up to a bright and shiny new day, and it’s good. I can’t deny it, and frankly don’t want to. I’ll go out and do something, anything, to take advantage of the day. I’ll put off the drowning fish to another time, and be grateful for what I’m doing now. I think for me, at this exact point, today is what matters right now. Think I’ll grab it.

Never forget how much I love you all.

Head to Weather…

Those familiar with the sailing world know what that phrase means, “head to weather.” You’re putting the bow of your boat as close to windward as possible, or into the ‘weather’ that is working hard to send you leeward of your course. This heading sends you into the wind, seas, and usually the swells, so it tends to be a bit more of an uncomfortable ride. It tends to be colder, wetter, bumpier and swellier, adding stress to the vessels tender points, and stress to the sailor, too.

I’ve got my bow pointing straight into the weather right now. September 9th, I wound up in the ER for what I thought was a stupid asthma attack. Turns out my asthma attack had morphed into lung cancer, stage 4 at that. A few days later I was at UCLA, admitted to their cardio floor. There for just over a week, I had a bronchoscopy, lung biopsy, pulmonary lavage, PET and regular CT scans, a few echocardiograms, and was sent home. I returned just 24 hours later in a bad way. My pericardial effusion had escalated to full on tamponade, so I was sent on up to the ICU with a pit-stop in the cath lab for a pericardial centesis. The next day, a couple of PE’s, or blood clots were found in my left lung, so an IVC filter was placed to keep them and any others away from my heart, brain and lungs. The following day saw a lot more fluid on the right side, so a chest tube was inserted to drain that pesky fluid. That night I wasn’t doing so well, and intubation was considered, then rejected (of which I am thankful). 40 lpm of O2 was being sent in a grand vortex of wind down my nostrils to try to keep my body saturated. It was a difficult time. Finally, a decision was made to get me on some treatment to slow this tumor and the pesky fluid it manufactures down. I was started on Taxol IV, and we were shooting for the best. About 10 minutes later, one of the oncologists pretty much ran into my room and told the nurse to stop the Taxol. The molecular findings of my biopsy were finally in, and I mutated! Woo Hoo! Only about 2-4% of people with lung cancer have one or more of these mutations, and I was one of them. What this means to me is, I can be started on a targeted chemotherapy, and the drug of choice at the moment is called crizotinib. I take this big pill twice a day, and it’s job is to target the cancer cells themselves, isolate them, cut them off from moving and nourishment, and thus render them the ineffective little &;$*#2@ that they are. My mutation is an alk4, and this drug has proven to be a very good alk4 inhibitor. So, we started a day or two later on that therapy, and slowly but surely, my condition improved.

I stayed in the ICU a few more days, and was finally weaned off O2 completely, except when walking or sleeping. After moving to the pulmonary wing, I had a more easily managed chest tube put in, one that I was responsible for draining on a daily basis. A few days later, I was discharged.

Being back on Willow is wonderful. Such a beautiful, restful spot for me, full of dreams and memories and sea miles. But it’s hard, too. I find I can’t keep up with the very routine maintenance that needs to be done. My energy is sapped just getting out of the bunk and brushing my teeth. It takes alot of energy to take my pills (12 of them) and drain my lung daily. I’ve found it very difficult to eat anything, and that serves to take my energy. One of the medications that protects my heart drops my blood pressure, thus taking energy. The diarrhea from the chemo takes my energy. I find myself staring out my portholes thinking this isn’t good for the boat and it’s certainly not good for me. After two weeks of outpatient appointments, and feeling worse daily, I was sent back to the hospital, this time Santa Monica.

Originally admitted to the oncology floor, after 10 minutes there, it was clear my breathing wasn’t good enough to be able to stay. I was sent up to the telemetry unit and put on a morphine drip. The next morning, after some CT scans, a chest tube was placed in the left lung, so at least I had a matching set. Alot of fluid was pulled from it, and it made quite a difference. The placement of the tube in the left side was much more painful than the tube in the right side, and it kept me down for a number of days. My last few days on the telemetry unit were quite difficult, and on the last day, after being accused of “pain-medication seeking behavior,” I’d had it. I told the nurses I had no more pain, and was signing myself out AMA. Fortunately, at this exact moment, one of the oncology nurses arrived to give me my chemo pill and asked what happened. Within hours, I was down on the oncology floor. Within 2 days, the pain resolved, and I was off any pain meds. I would pre-medicate when I was going to drain one of my tubes, but that was it. The next day, I was told I would be released and arranged for Linda, my great partner on Rescue 10, to come on down and give me a ride home. All we had to do was drain that left lung and I was free! Except the tube was clogged. ARGHHHHHHHH! Another night in with more attempts, xrays, and CT scans to work on for the next day. I just wanted to go home. 5 of the last 7 weeks I’d spent ‘in the big house,’ and I was ready to get outta there. The next morning found me up early, and the nursing staff was ready to try draining that tube again. After using 3 bottles, SUCCESS!! A big ooey-icky (official medical term) clog finally passed on down the tube, and I was sprung!

I’ve been home for 2 days, and the future has lots of questions in it. Questions for me as to how to organize the next phase of my life, and questions for my docs as to what the heck is going on, and what the heck are we gonna do about it. My goal is to feel just a little bit better than I do right now, and to breathe better than I’m breathing at the moment. Both I feel are attainable; I just need help with the plan to make it happen.

I wouldn’t have made it this far if not for my amazing family and friends, old and new, who bolster me up daily with their love and encouragement. I’d love to try and list you all, but my addled brain would have me missing one or two, and I cannot dishonor anyone like that. Just know how much I love and care for you. You’re the BEST!