Celebration of Life for Wendy Cummings is on Thursday, June 25th from 12:00 p.m. to 3:00 p.m. at:
Banning’s Landing Community Center
100 E. Water St.
Wilmington, CA. 90744
Attire is Wendy Casual
In Lieu of flowers, Please send a donation in Wendy’s Name to:
Fire Family Foundation
815 Colorado Blvd.
Los Angeles, CA 90041

Hi Everyone! I thought I’d sent out a real quick, brief update to you, and thank you all for hanging in with me through all of the mis-, lack of, false or any other type of information out there.

Monday, the 18th of May, I wound up in the “ER” of City of Hope with some impressive shortness of breath. Dx’d with a “touch of pnuemonia,” I was admitted for a few days of IV antibiotics. After subsequent scans, I began a course of big steroids. I am not fond of big steroids, or of the alter ego they invite, aka Weepy Wendy. After 4 days or so, there was no improvement, and I was started on traditional chemo with Alimta and carboplatin. I really didn’t see much improvement until the narcs were adjusted, and slowly, the dosing started to come together. The steroids kicked in (with their friend :(), and things started to turn around. I was amazed at the amount of raw strength it took me to move 3 footsteps from the bed to the head. Absolutley floored. I think that’s one of the hardest things I need to get through my head. After 50 years of thoughtless motion and movement, I must slow some of the most basic activities down. When I do that though, there’s an immediate gratification of ease of movement, no air hunger, and calmer mind. Kids, being unable to breathe is one of the most terrifying activities on the planet. Yikes. And this last week was one of the scariest ones for me yet. I’m a big dang sissy, but I can wear my sissy pants pretty well. I gots mad style…

I received some of the kindest nursing care and physician care around, and it shows! As always, there’s some sort of hiccough, and this time involved my discharge. After some misunderstanding and less than optimal communication, things smoothed out, and I was discharged after a week and a half. Remember, hospital stays are not for rest, and none occurred here! But we got down to bidness, accomplished bidness, and are (slowly) moving onward and upward. I’ll be able to write more later, but since its 0945 right now, it’s mandatory nap time.

Thank you so much for keeping me in your hearts and prayers. Thank you for taking such good care of each other. Never forget how much I love each and every one of you. Best Fishes!!!

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.

Beautiful Water off of Baja

Oh, I need to let y’all know, Wendy’s Pity Party has left the station. Yikes! Even I was cringing as I read that post this morning. I am duly embarrassed, shamed, wimped out, and so many other words I can’t even come up with right now. I do know I need to do it every now and then, but perhaps not quite so proudly??? Sheesh!

The wonderful thing that post brought out were the comments, here on the blog and to my personal email. I have some truly wonderful, inspirational, honest, funny and worm-free friends. (More on that later.) You all lift me up so stinking high, I don’t know how I ever got in that position to begin with. One friend commented on the similarities between life and a battery: ya can’t stay charged up without both the positive and the negative. I love that one! Another friend said to get the anger out so I can make more room for the good stuff. Some shared their simple philosophies for hanging with this day to day crap that makes life, LIFE, and what they do to find some of their peace of mind. Others offered up simple encouragement to get me on to the next day, today, and on to the next phase of trouble making. Of late, it has been alot of ups and downs, but this is what life is, and I’m determined to smooth out some of the bumps. My favorite season is just around the corner, giving me the opportunity to spend more time on or in the medium I love, and I’m gonna do it. Why whine about it when I can change it?

The story from my worm-free friend had me laughing straight out loud. One of my former workmates routinely gets a headache when he works the graveyard shift. Changing up the ol’ circadian rhythm stuff can be tough on the body, and he’s been doing it for 28 years. So, on the nights off, he sets up some Aleve for the middle of the night headache, right next to a glass of water. This allows him to blindly fumble exactly for what he needs and not really wake up. Well, his young daughter wanted to make sure he didn’t forget to de-worm the cat, so she set out the de-worming medicine right next to his four Aleve. Needless to say, he took four de-worming pills instead of four Aleve and went back to bed. Not for long! Boy, did he get sick! After a twelve pound weight loss and alot of belly distress, he consulted both his doctor and his vet. The consensus: He would be very ill but will recover. But if he starts licking himself in strange places and chasing birds, the damage could be permanent… He has a great relationship with his doc… Thank you for this one, Erik. Dragged me right outta the pit! You rock!

Thanks for everything, including the kind, caring, heartfelt and funny words. I couldn’t have done it without you!

I guess it was bound to happen, and I guess putting it off doesn’t help much, BUT I’M PISSED! I’m not going to apologize for it because I think it’s a natural, eventual and honest feeling. I’m not proud of it in any way. I wish I could be one of those gracious heroines on TV or in the movies, but that ain’t me, and it ain’t gonna happen. I’ve said it before and I’ll most probably say it again: Cancer sucks.

From the Woe is Me file: I’m supposed to be on Willow in Hawaii right now, bucket listing warm water outrigger paddling. I’m supposed to be figuring out the next leg of my voyaging, most likely the South Pacific. I’m supposed to be sitting on the shoreline next to a camp fire and contemplating the constellations. I’m supposed to be continuing the simple life I chose many, many years ago. Instead, I’m trying to figure out how to stream in to a TV through my computer and taking pain pills. Not very simplistic, and I find this modern, ‘convenient’ life oh, so boring. A machine washes dishes for you, a machine washes your clothes for you, a machine dries your hair for you, a TV entertains you or conversely, puts you to sleep. UGH! (Boy, am I ranting now!) I feel stuck to this (wonderful) apartment, and don’t even want to go check on Willow because it makes me sad thinking of where I would be right now. I’ve been back from Mexico for a year at this point, and what a year it’s been. ARGHHHHHHHHHHHHHHH! I’M SO PISSED!!

I’m sitting here after my morning coffee with tears running down my cheeks feeling pretty dang sorry for myself. I don’t like it very much, but I think it’s all part of it. Life gets in the way of the best made plans. I’ve found I need to wade through this muck and get through to the other side in order to find any peace. The frustrating part is the peace is segmented and full of speed bumps. Deep breath. It’ll be much easier to gain insight from all of this once I’m past it. I can do this. I’ve done so many amazing things in my life, there’s no reason I can’t do this. This is, actually, a pretty amazing thing to go through, in so many different ways. Deep breath.

I’m gonna go wash my face, take my clothes out of the dryer, empty the dishwasher and plan my day. I have this day to have. That’s nothing to be pissed off about, and is something to be pretty dang thankful for. I have all of my family and friends to help me, support me, and make me laugh. It’s time to move on to the next speed bump and greet this world. I can do this. Deep breath.

I love you all…

Beautiful hues of blue a hundred miles offshore…

Hi Everyone!

As many of you know, since the beginning of 2015, I have been seeking my care at City of Hope up in Duarte. I couldn’t be happier, and their aggressive trial treatment has proven quite successful for me. Woo-hoo! If you look back a couple of entries, you can see the difference in my chest scans. Without being a radiologist, just looking at the areas of black (good) on the second scan compared to the first, the benefit is obvious. Yay, me!!! And many thanks to City of Hope! When I go to the facility, I always feel enveloped in skill, knowledge, caring, and yes, hope. It’s a great place.

I am also about a month in to a pulmonary rehab course at Mission Hospital. Due to their willingness to lend a hand, they’ve given me an affordable option so I can participate and take this upswing as high as I can take it. The nurses there are working with me, oh, so patiently, to increase my pulmonary capacity and efficiency so I can do more with less. They are special, special people.

What a life, right? Everything’s going the way one would want it to, so what the heck is my problem? I’m finding myself frustrated, in pain, sad, and confused. I mixed up my priorities, and now they’re difficult to streamline again. And streamline in the right direction. My doctor helped me a little yesterday, and I think I’m beginning to work through my “Ah hah” moment.

During my second admission at UCLA, I was so sick, there was never a plan for discharge, and a discharge plan is something they begin pretty much as soon as you’re admitted. One night, my family was called because the doctor wasn’t sure I was going to make it until the morning. I was a pretty sick puppy. My stubbornness won out, and I fooled them all. I had one more admission to Santa Monica for a couple of weeks, and then moved on to an oncologist down in my area. That didn’t go so well, and I got kinda sick again. With his unresponsiveness and arrogance, perhaps a gift as I look back on it, I was able to move on to City of Hope.

It’s an amazing place your brain can take you to. I have always been pretty upfront and matter of fact about stuff in my life, and this was some pretty big stuff. Being told I have Stage 4 adenocarcinoma of the lung with mets to various bones was pretty dang sobering. Upfront, it means I’m gonna die. This will kill me, unless the bus flies out of the sky and hits me first. And with my condition prior to City of Hope, it seemed I would die sooner than later. Being that matter of fact person, I have spent the last six months preparing to die. Please don’t get me wrong. I’m not walking around dressed in black with my arm around that guy with the black hood and the real sharp scythe-thingie. But I’ve been making plans for bills, final affairs, not buying things that someone’s just gonna have to get rid of, stuff like that. I need to get Willow ready to sell, and then just sit around and wait for it, right?

WRONG!!! I’ve been given a huge, incredible, wonderful, life extending gift, and it’s thrown me for a loop! Can you believe it? Now, living confuses me! What a dork! There I was, “ready” to die whenever, and it looks like that’s not gonna be anytime soon. And that’s a good thing! But I need to swing my brain back around to not expecting death just around the corner. I need to get back into my living mode, having fun mode, traveling mode, laughing mode, and experiencing life mode. I need to meet more new people, people who don’t perhaps speak Ingles, need to swim in the ocean again (once I get rid of these dang tubes), sail Willow again, drive cross-country, paddle again, have adventures again. And why the heck not??? I’m done sitting around waiting for the other shoe to drop. I can hack and move past the chest discomfort, so I CAN work on doing the things on my bucket list. So stand by. I’m back!!!!!

Thank you, Dr. Reckamp!

Much love and best fishes!!!

Avalon Autumn Sunrise

Stubborn, independent, self-made, hard-working, giving, successful, go-getter, caring, kind, stubborn, single-minded; these words may be used to describe a successful person, especially in this day and age. Note there’s nothing about money mentioned. I don’t feel financial wealth to be a standard to be successful, but that’s just me. All of these qualities I am happy to strive for, and they help me feel worthwhile. In my book, if you work hard, don’t take much for granted, take your lumps as they come, because they will come, play hard, and be a good person, then you are successful. Yet I’ve found this success can get in the way of another important aspect of life: receiving.

I love people. I love serving people, and I loved my work. With the FD, I worked with the finest people on the planet, for some of the most amazing, poor, sick and inspiring people on the planet. I loved running calls, loved my partners on the Rescue, and loved trying to help those in need in truly unimaginable situations. Just when I thought I’d seen it all, the next shift showed me something new. Sure, there were terribly violent and wickedly persecuting incidents, but there were also uplifting ones to balance out the pain. As a harbor patrol officer, I was able to serve on the water (a bit selfish, I admit), and it was a gift to me to be able to do so in such an ever-changing environment. I felt honored to be allowed to take part in someone’s most life-challenging and intimate moments, some tragic, some happy. I tried to respect that part of my job, and at times it was difficult. Trying to understand the reasons for certain occurrences was mind-boggling and I finally learned to stop trying. But I never gave up trying to be present for those involved. A lot of that wasn’t taught in paramedic school or covered in continuing education, and I think it’s a difficult thing to teach. Everyone has their own way of seeing things, but I feel it’s something for rescue workers to always keep in mind. It’s another way of serving, of giving. I think I was good at it.

Now, things are very hard for me because I find myself in the position of taking. Not taking, per se, but of receiving. I’ve learned that’s a very difficult thing for me to do. For those of you out there who’ve been trying to give, I’m trying. It’s quite a challenge for me, being one of those stubborn and independent people I wrote about earlier. And it’s so difficult to receive gracefully! I want to honor those who have given and are giving, and due to my flippin’ ego, I find it almost impossible to drop the facade and just allow it to happen. I see myself fighting it. I consciously try to recall how special it made me feel to give to others, to serve others, to help my family and friends, and it was life-sustaining. I had a purpose on this planet to give, to serve. And those I served received. I need to give more by receiving. I honor you, thank you, and am so grateful for you, for your gifts. Better yet, you give in so many different ways, and that’s such a wonderful surprise. You listen, you laugh (the best!), you sand, paint and varnish, you cook, you drive, you paddle, you persist. For all of this and more, thank you.

I’ve searched to find the right words to convey all of this, and it’s quite a challenge. Sometimes the words flow, but this time there’s no flowing. I’m trying, and I want you to know I’ll keep trying. Please know I am so grateful for all of you, I am humbled by you, am honored by you, and I honor you. Best of all, I love you. Maybe it’s that simple?

I love you.

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.

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…

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…