The Black and White of It All…

Chest CT Scan taken 01/08/15.

Chest CT Scan taken 01/08/15.

Hi Everyone!

I hope you all are making it through what trials and tribulations you have at the moment. Those of you in the East, South, Midwest and Southeast are freezing your keisters off right now, and I’m so sorry about that. I know you are tired of the cold and snow. Those of you in the West, Southwest or Baja are roasting in a drought right now, and I’m sorry about that, too. May we all make the best out of where we are…

Me? I’m giving it my best shot. Above, you see a picture of something, and what the heck is that something? Now, don’t be looking any other place than in the middle of this picture, because the rest is private, and I’m really shy and get embarrassed easily. I said, don’t look there!!!! Okay, so here’s the explanation. What you’re looking at is a CT scan of my lungs taken January 8, 2015. At that time, I was still thankfully hauling around a portable O2 machine, wasn’t walking far (maybe 20 yards), and was speaking in one word sentences. All that means is I was still pretty short of breath. The big black area on the right in the scan is my left lung. My left lung is looking pretty good, and I’m pretty thankful for that. There’s a nice black “O” in the middle of the scan, and that’s my trachea, or windpipe. To the left of that is a big white area. That’s bad. That’s big ol’ icky tumor, with a tiny bit of black in the left lower area. That’s the only area of that lung getting any air, or, it’s the top of my liver. I never said I was a pro at reading CTs, but no wonder I was short of breath!

This is the point I started the clinical trial at City of Hope with Dr. Karen Reckamp and the pulmonary oncology team. I took three pills a day of the super secret medicine for a week, then increased the dose to six pills a day. There were a few speed bumps along the way such as a bunch of blood clots and then some chest pain, but who said it’d be easy? Following is a view of the scan taken March 2, 2015.

Chest CT taken 03/02/2015.

Chest CT taken 03/02/2015.

See the difference? The area where my right lung should be is black, not white! We like black, black is good, black means air. It’s not as big as the left lung, on the right, but if you’d been sleeping at the switch for the last six months, you’d be smaller, too. This scan helps to explain the chest pain I’ve been having. I’ve felt a band encircling my lower chest and tightening, especially when I tried to take a deeper breath. It would increase when I moved in certain ways, coughed, tried to laugh, and take deep breaths. The chest surgeons explained this pain as textbook, as this is the way my lungs are telling me they want to work, they’re waking up. In their words, “Pain is good.” Leave it to a surgeon! Seriously, having an explanation is all I need to work through it and understand why it’s happening. I may never be able to get the right as “black” as the left as something called atelectasis has set in. This means I’ve lost some elasticity to my lung, the ability to inflate and deflate. This is caused by a disease process, and/or pulmonary inactivity. Some of it I may be able to stretch out, but much of it I may not. I am not complaining. I am ecstatic with the amount of air I’m able to move now, and am working to increase that amount as much as I can daily. This lets me begin getting some exercise, to get out and enjoy my new surroundings, actually go for a hike. Or a paddle.

I am so very grateful.

I’m planning on riding this wave for as long as it’ll break, enjoying the smooth, aquaeous beauty for as long as I can. Maybe even do a few headstands while I’m at it!

Take care, Everyone, and hang in through the rest of the winter. Spring is coming soon! Remember I love you all, and keep doing good things…

wsea61

February 21, 2015

Dana Point Sunset

Dana Point Sunset

Note: I wrote this in December, 2014, when I was at the bottom of a pretty low low. I didn’t publish it then, but it was good for some catharsis. As I read it now, I’m in a much better place and prednisone is far, far away. Many of the things I wrote about have resolved, and that’s a great thing! Again, the body is an amazing creature capable of changing in amazing ways… By the way, Weepy Wendy is not welcome ever again. I do not like her.

Enjoy!

As I move on along through this adventure, I find myself noticing things about my self, and my body, that frankly I hadn’t expected to note until I was in my seventies or eighties. Sure, the hot flashes they tell me is the tumor talking, but sheesh! Bright red and soaking wet in twenty seconds or less, and then freezing again. I never used to freeze!
My ankles, feet and legs are swollen and tight, but no one can tell me why, nor do they seem to care. So, they just stay swollen and tight.
My body frame has gotten smaller, never thought I’d see that before I was seventy, and much less bulky.
I HAVE NO STRENGTH. I was the strongest person I knew, and I was dang proud of it. The lifting and physical work of the fire department, and the training it took to continue to do the job well all worked to keep me strong and healthy. What the heck happened???? This past weekend I went up a flight of stairs and about coded.
I continue to manufacture about 1500cc of fluid out of my lungs daily. I know this because I drain them daily. I drink and drink and drink, and pee once a day. I’ll spare you the fun changes I’ve noted that most older folks note having to do with various stages of digestion. Let’s just say none of them are pleasant.
There is still a hand on the right side of my trachea and it’s pulling to the right, but I’m told not to worry about it. Since the right lung ain’t working anyway, it’s no real concern.
I itch! I itch so badly! This afternoon, I’m filing each of my fingernails down so I can’t injure myself anymore. Seems when I’m sleeping, I begin to scratch my arms and legs, unknown sources of itching, and then bleed all over my bedding. I’m not on any narcotics, so that’s not the source of the itch, but I’m tellin’ ya, I itch!
When I swallow I can feel something impinging on my esophagus. I don’t know if it’s inside my esophagus, or pressing in from the outside, but it’s a bit uncomfortable.
There are bright and shiny things at the periphery of my vision, especially at night. A common side effect of the crizotinib, at times they’re so vivid I duck out of the way.
For about the past 6 days, I have cried the entire time. I’ll start to cry as I’m driving down the road, sitting down to eat, or beginning to talk to someone. I’ll be walking down the aisles of the market, and I start to cry. Just outta the blue, tears flowing down my cheeks, face all scrunched up and icky looking. Weepy Wendy’s come out to play. I do not like Weepy Wendy. I’m hoping she was invited by the prednisone, and will be kicked out on her keister soon. I do not like Weepy Wendy. Am I repeating myself???
My voice is gone. I’ve read the tumor can paralyze your vocal cords, so I don’t know if that’s the case, or it’s just that I have insufficient air volume to push through them. Either way, the sexy secretary voice is here to stay…

All of this and more amazes me. I’ve always tried to be aware of my body and what it can do. I was always excited to learn something new for it to do, to accomplish. Now I’m seeing my body do different things for different reasons, and it leaves me in awe. I hope it doesn’t seem like I’m complaining (okay, maybe just a little) about it. I’m just pretty struck on what you can ‘feel,’ what you can detect, if you stop and just be. It’s all pretty amazing…

Post Note: I wrote this in December, a not-good month for me. Please remember how much I have improved since beginning my care at City of Hope. My digestion is back to normal, swollen legs resolved, sexy secretary voice gone, hot flashes still here-dang it, lung fluid diminished, and NO MORE WEEPY WENDY. I did not like her, did I mention that? I no longer itch, thus I no longer bleed, my swallowing is back to normal and there is no more pulling sensation on my trachea. I am, essentially, back to whatever state I called normal, and resolve to stay there with my new magic mystery medication. I even am exercising again, and will begin a pulmonary rehab program soon.
So don’t let the words get you down. They just describe experiences I HAD, not am having, and are far in the past. I am a grateful, grateful kid, and know where I am in this crazy world. I send strong thoughts out to others so they have as good fortune as I.
Take care all, and have a fabulous weekend. Best fishes, and with love!

Whasssssssup????

Me Paddling in a Time Long Ago and a Land Far Away...

Me Paddling in a Time Long Ago and a Land Far Away…

I got on my board today for the first time in 6 months! Woo Hoo! This new secret magic mystery drug is pretty darn awesome. Did a long, slow lap of Dana Point Harbor. My triceps are tired. Yay, me!

May you all have as fine a day. Best fishes and with love…

Salt and Sea, Sublime

Little Bit of Everything off San Jose del Cabo, BCS

Little Bit of Everything off San Jose del Cabo, BCS

As I drove into the parking lot, I could smell the pungent aroma. Of kelp on the beach, decimated sea critters pounded into oblivion by the large swell, and the small reef exposed at this low tide. There were two dozen kids in the water, and not all of them were surfers. There were people on the beach in various stages of dress, with varied accoutrements of fun nearby. There were body surfers suiting up, photographers with numerous lenses, sand explorers with metal detectors scanning the beach, and others just watching. I waited for the sun to peek around the point.

There’s a nice swell moving into the area today and tomorrow resulting from the Pineapple Express pounding the Bay Area. I watch as the body surfers exit the water, hair in their eyes and snot running, grins of exhilaration that will take hours to fade stuck to their faces. They remind me of the years spent at Zuma, Mom on the beach and us kids in the water until we were forced to get out. To me, there was nothing like that lift the swell gives you as it goes by, or the delayed “water quake ” as you hunkered on the bottom, waiting for that bigger wave to pass through. I always got out sunburnt, salty, and grinning knowing I was going to sleep well that night.

There are youngsters on the beach with camera outfits that cost more than my car. Parents proudly watch, watchers gauge the wave height vs their own courage, and gray whales and sailboats wander by offshore. Whitewater shoots in the air, and a turquoise-jade colored wave reflects the sun shining through it.

Many go to Church this Sunday morning. I’m already there.

What’s Next…

Where's (Who's) Wendy??

  Where’s (Who’s) Wendy??

Wendy 4

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!!!!!

New Beginnings

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

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!

Merry Christmas, World!

Good morning, Everyone, and Merry Dang Christmas to you!

Please know I mean no disrespect when I wish you a Merry Christmas. I wish you all the happiness, joy, peace, and goodness to each other it’s always meant. At least in my lifetime. The simplicity of my wish to you is that you have a beautiful day filled with family, friends and fun. Throw in some love, joy and peace, and where can you go wrong?
Throw a little goodness toward someone down on their luck, and it’ll come back to you in ways unrealized for years. I guess my wish for you is to share those beautiful and joyful things in the ways I know you can. Be good people; we need you! And never forget, who loves ya???

Best Fishes, Much Love, and Merry Christmas!!!

PS Many thanks to Santa Erich for getting me into City of Hope. I didn’t think I’d been that good a girl… Thank you, E!!!