Where’s (Who’s) Wendy??

Hi Everyone!

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!!!!!

Punta Mita Sunset, Courtesy of Nancy Novak, S/V Shindig

Hi Everyone, and Happy Dang New Year to y’all!

I hope everyone enjoyed the holiday season, and it was full of fun, family and friends for you. It’s never been a favorite time of year for me, and this year was no different. There were some “issues” with my new doctor, and he has been fired. More on that later. The beneficial part to all of that is I have moved my care to City of Hope, and couldn’t be happier. They have not forgotten what it’s like to be ill, and they definitely get it.

I am taking part in a clinical trial, helping researchers get the dosing down for a new targeted chemo. I’d tell you the drug’s name, but it’s just a number at the moment, and I wouldn’t want to have to hurt you. The drug is in small pill form, and I take 3-6 per day, depending on the study parameters. There is a daunting list of side effects others have experienced, but I am so fortunate to say, I have had none to date. For the first month, I go to CoH once a week, and after that, it’s once a month for study purposes.

The standards CoH seems to follow are standards that seem to have fallen by the wayside as patients are no longer referred to as patients, but as customers or clients. I believe insurance companies are spearheading this as they strive to remove decision making from physicians and instead give it to their own “medical boards.” Having played with that aspect last month, I can attest to the frustration it brings. The staff at CoH actually answer their phones, and if they don’t know something, they go find the answer and get back to you in short order. I am always greeted with a smile, and as the campus is new to me, there is no shortage of helpful volunteers ready to escort me to my destination. My doctors and nurses are very responsive to my questions and comments. One nurse took the brunt of a mini meltdown last week, and greeted me with a huge smile and hug on my next visit. After the issues with my other doc, I felt I was free-falling through space; CoH caught me, and has lifted me up. As corny as it sounds, they’ve lifted me up with hope.

The doctor (I use that term loosely) I saw last month nearer to home is someone who should retire, I believe. I saw him once early in the month, and we scheduled up some scans and blood work. Before any of those could be completed, I began having episodes of sudden onset shortness of breath. When I would call him, his response would be to go to the ER, but he never wanted to follow up. The 23rd of the month was the day my scans were scheduled. That morning, I really couldn’t breathe. I called him again to see if he wanted to see me in the office. He answered that he didn’t have anything else to offer me, and thought it was time for me to just go into hospice. Over the phone! With no recent scan or blood work, he just gave up on me. Needless to say, I was crushed. Fortunately, my sister Missy found a palliative care group out of Hoag Memorial, and they were very responsive. Turns out my shortness of breath was related to a very rapid heart rate that would come on without warning. The palliative care group prescribed some effective medication to help with my breathing, and my cardiologist is monitoring my heart rate closely. The week after Christmas I followed up with this oncologist, and he said, “Whoops! Maybe you aren’t ready for hospice yet…” Sorry, you’re fired.

So, I’m starting new with new doctors, new drugs, and a new facility. This helps give me a renewed feeling of hope that I’m on the right track. Thank you, Erich, for getting me in to the City of Hope so quickly, and thank you, Missy, for Dr. Nguyen and the CARES program at Hoag. There are not enough thanks for me to send your way…

I hope everyone has a great 2015, and never forget who loves ya!