Author: peggyisawesome

October 27, 2018

Peggy Friends for Life,

This morning one year ago was the saddest time with Peggy’s passing — and also a time of great relief as her 10+ month endurance of non-stop horrific pain was over.

I am so so happy that she passed her sleep – in her own home – on her own terms – with no fear.

To say Peggy is the strongest bravest person I have ever met does not even begin to describe how incredibly she faced and battled her terrible cancer.

I am so so even happier that we all were blessed and lucky to have had Peggy in our lives and hearts – changing us for the better, forever.

Let us always honor and remember her “girl on the go” spirit and her never ending smile and joyful laugh.

Love and Giggle and Dance – Peggy-style,

-Randy, Brian, & Tommy

 

At 5am California time on Friday, you probably felt a flow of pure and happy energy race by.   Peggy has always been on the move – never resting a minute – and now she has continued her journey.   On her terms and in her way.

With incredible relief that her pain is over – but with profound grief and deep love – I am typing these words to let you know that Peggy passed Friday morning in her sleep.  I was awake and right by her side.   She was fast asleep and in no pain when it happened.

I firmly believe that she literally willed her body to do what she wanted it to do.

As you know — but I feel very compelled to say it again here to help us better understand her strength — Peggy has been in non-stop horrible pain since the end of February.  8 straight months.  I doubt anyone reading this can truly understand what that really means.  I have been a witness every day, and I still don’t comprehend what that must be like – and how someone has the gumption to keep pushing forward hour after hour.   Peggy did.

But Peggy would be super mad at me if our focus was on her pain.   She NEVER let the pain and the cancer define her.  Never.

Instead, she kept living her life on her terms, and kept engaged and doing fun things with her wonderful circle of family and friends around her.

Peggy is the Renaissance-woman.  Peggy has been a passionate and devoted mother for Brian and Tommy, an amazing wife for me for 36 years, a school teacher, a camper, a woodworker, a coach, a designer/architect of outdoor living spaces, a scuba diver, a cook and cookie maker, a world traveler, a beach girl, a skydiver, an artist, a dancer, a sand angel pioneer, a sunrise and sunset aficionado — and a supremely curious soul who would take a real leap of faith to embrace a fun new experience.

I have had the wonderful luck to have run with Peggy for almost 38 years.  She showed all of us her tremendous courage this past year — and she has shown all of us her pure joy of life from the moment each of us met her.

The “Celebration of Life” Gathering for Peggy is this Saturday, November 4.  Please contact me if you would like the details.  The initial planning suggests it will be an epic gathering – appropriate for the woman we all love so much.

With Love,

-Randy

The Facts:  Peggy was born at 6am on Thursday, February 9, 1961, Cincinnati, Ohio.  1961 was a great vintage year for wines round the world.  Peggy passed at 5:10am on Friday, October 27, 2017, in Poway, California from a battle with pleural mesothelioma cancer.  2017 was a tough year. Peggy’s Mom and Dad are Jane and Jim Kossen, and she had 5 sisters and brothers:  Ann, Jimmy, Dennis, Mary Jane, Chris, and Andy. Peggy went to Princeton High School, and graduated with a degree in Special Education from the University of Cincinnati.  Peggy and I were married on September 5, 1981 – Brian was born on July 1, 1983, Tommy was born January 14, 1990, and Brian and Elisa were married June 6, 2015.   Peggy rocked the world every single day.

Photos – don’t be upset if I missed a great one with you and Peggy!  😉

 

Sanctuaries can be places, they can be a specific event, they can even be an act to which you can become a part of……but for me, I have created my own little sanctuary, in my own little oasis filled with candles and plants and furniture that is warm, soft and memorable of enjoying on a warm summers night.   The underused and almost forgotten space which was occupied for too many years by an outdated Jacuzzi, now has hummingbirds in all their glory, along with overflowing flowerpots of succulents and daisies…….my own little sanctuary, where at the end of the day, I find my own little peace and calm. With the news from the past few weeks, Randy and I have needed to find our own sanctuary, our own calm before the storm.

My tumors have metastasized from the outside lining of my lung to my spine. There is a silver lining if that is even possible. The cancer is focused on the spinal bone and not the chord. So, with this new glitch in our path, we travel forth…….there are numerous spots of cancer throughout my spine…….it just totally sucks!!! We are in need of good news for a change…….so we start with another procedure–the beginning of July through August started out with cryo-ablation the first week of July…….by all approaches a very successful procedure, which was done up in LA.

We have also had a plethora of visitors………… love, love, love all those visitors. Thank you— Karen and Cheri and Mary, my Mom, Karlie, and others, Del Mar Days and more………you all help me survive when I didn’t know when survival is all that I need. We have been drawing short straws for way too long—we found out that I did not qualify for genetic immunotherapy, which was quite the bummer…..we also got the news from the Kaiser thoracic surgeon that I was not an eligible surgical candidate because of the growth of my tumors.  We are moving forward…..because there is no going back.  And Randy, Karlie, and I were in Los Angeles yesterday for another procedure – with good results! — and I’ll update you soon!

If not for the love and understanding and compassion and did I not say the LOVE of my most fervent supporters, and that would be Randy and Brian and Elisa and Tommy and Katie. I could not have traveled this journey nearly as pain free as has been possible! There has been new love and shall I say New Life!! That’s Right. I now will have grandmamma as the favorite moniker of the day– That’s Right — A Smerik baby is on the way!!!!  Way to Go Brian and Elisa!! What world problems to have to deal with. Just another miracle that I can’t wait to be a part of!!!

The Golden Hour…….has become that time just before sunset….I call it the golden hour which falls from 7:00-8:00 in the evening. This is when I glorify in the golden hour in my sanctuary. I find my calm before the next storm that comes across our path.

Lots of photos — all of these were taken since my last blog post – lots and lots of fun visitors and adventures:

In the past few weeks there has been a massive amount of medical crap that Randy and I have had to deal with, but, before I get into the grimy details in the next post, I gotta share a special moment from a visit with Cheri, a forever friend since high school, who still lives in the Cincinnati area, who was able to come out for a visit recently.   Guess what?!  She is now in the Salem, Oregon, area with her hubby, Craig, and they will be witnessing the TOTALITY of the Solar Eclipse!!  Go Cheri and Craig!!  Lucky ducks!

Anyway … Cheri and I did it……racing to see the first light as it kisses the desert mountains near our home in San Diego. My good friend Cheri and I got up at 4am … got in the Mini … top down (of course) … and headed east on a chilly morning to witness a glorified miracle as the sun made its appearance that day.

 

For us it’s special, we are fighting our own little battles with this crazy cancer existence. I gotta tell you it truly sucks that she is dealing with Stage 4 melanoma, while I do business with my Stage 4 mesothelioma. We are moving forward…….because there is no other option……..and we are definitely hoping for some options in this out of control situation that we find ourselves in.

We will battle on, but for now sharing a sunrise will suffice. I definitely recommend to you all to take the time and witness your own little miracle and cherish all that comes your way.  Listen to me – the wise words!

We are now racing through July! My cryo-ablation procedure took place in Los Angeles … and we wanted to wait to see if it worked … and both Randy and I now feel that it was uber successful!   The ever present pain level is still bad … but more manageable. At this point, I have come to the realization that there will always be pain … sad, but true … but I can deal with a level 3-4 … yep that means that Fluffy is still there, growling in the corner … but not nearly as bad as dealing with the gnawing nastiness of a constant level 8-9 that I had been dealing with until we had this latest procedure.

I talk about these numbers for pain level … gotta let you know that I am really pretty shitty about rating my pain … I try and be consistent, but pain is its own little beast and rating it can be overwhelming and not really accurate. That being said, I do wish I could be more forthcoming … I am trying to do my best.

Life is very fleeting … A very close friend of ours died unexpectedly at the end of June, and it just took the wind out of my sails … I mean, I am writing about my battle and all, and for Randy and my friend Roy—just so powerful and crazy that at 56 years young…..poof….just done. I tell my friends and family that I just don’t feel like I am done yet … but are any of us really finished with what we have been put on this earth to do, I don’t know.  So, with Roy in mind, I am trudging forward, giving it my best each and every day that I do myself proud in what I set my mind to on that day, taking the next corner or obstacle the best I can. So, until next time know that I am in a pretty good place, kicking it back in Poway California, enjoying visits from family and friends and trying so hard to tackle this crazy cancer that has taken hold of me … but has not become me.

We have put some serious miles on our vehicles or on trains or on airplanes … whether it be to discover the wonders of Northern California (Go Eureka!), or numerous doctor’s appointments—near and far—we have traveled … this however, was to Los Angeles, its own little paradise to get to and maneuver around.

Of all the FUN things that can go with a day in LA…..a doctor’s visit about scheduling cryo-ablation was not the top winner of the prize.  That however, is the reason behind our trip 100 miles north — and the mad dash to San Diego for another appointment about scheduling a biopsy, as soon as possible … like yesterday — all in the same day! Anyone living in Southern California knows that you CANNOT schedule a specific time that it will take to get from point A to point B … LA traffic is crazy — so to make a trip from LA to San Diego with fixed time limits in one day is sorta kinda crazy in its own right. But that is how we roll … cryo ablation consultation at 2:00 pm in LA (Hollywood), leave the appointment at 3pm, and biopsy at 6:00 pm in San Diego.  The mad dash!

We meet with Dr. Der, the interventional radiologist, who would be performing the cryo ablation for pain management … this is not a procedure to treat mesothelioma, but a possible way to the pain that comes along with it. I have always felt that I have a pretty strong threshold for pain—but this has turned into a whole different ball of wax. I have nothing to compare it with … labor pain, broken bones and the like, do not come near to the ever present, beyond my control pain that I am now dealing with 24/7.

With the cryo ablation we have hopes that it will be a manageable solution to my pain without taking a ridiculous amount of more opioids. The good news is that he absolutely can perform the procedure, the bad news is that the soonest it can be done is sometime in July. We get on the surgery schedule … and Yay … the first appointment available … July 3 … bright and early @ 6:30am!! I am hoping for a great hotel—near the hospital—just so that includes accommodations in case an overnight stay is in our forecast.

We did it!!! WE made the MAD DASH from LA to San Diego (with 10 minutes to spare) … met with the surgeon … and we got the biopsy scheduled for the following day … bright and early (of course) … to harvest cancer cells from a lesion on my back to see if immunotherapy is an option for me to battle these damn cancer cells.

For some reason … I thought this whole procedure would be a walk through the park. Let me tell you, it was not—here I am on Monday, finally feeling close to halfway normal again … we are talking my normal now … which as you may know is not normal at all. I now have an additional battle scar—a lovely 3 ½” beauty on my mid-back area … not too big, just enough to make it uncomfortable to sleep, sit and move around with ease … sorry, that sounded a bit too whiny, even for me.

I will let you know if the cryo-ablation works for my pain … and we are waiting once again for results to find out whether immunotherapy drugs might kick some of these cancer cells to the curb.   Hopefully, we hear something in the next few days … because as you all know I am not a very patient person!

It’s been nearly 3 weeks—but I am finally feeling like I am HOME again……It has been a crazy travel schedule for me that is for sure. It is back to the old grind … medical appointments, scans and all the fun stuff that goes with mesothelioma treatment. Just days after my wild Belizian adventure, I was getting CT and PET scans … talk about a buzz kill moment … and what we see in the scans is totally unexpected and very disheartening.

Not only has my cancer resisted the current treatments, it has gone bat shit crazy … the PET scan showed growth … basically my left lung is now totally encased in tumor and that in some areas is up to 2 inches in thickness … not what we were expecting to see. This just totally sucks and is very difficult to process. So while I was loving my time in Belize, my cancer was and still is in an out of control sort of spectrum.

So as of now … mid-June, my chemo treatments have stopped (no need to have those toxins put in my body if they are not doing their job), we are looking into cryro-ablation to help with pain management—which has reached an alarming level in its own right and we are also checking out surgery to remove the existing tumor. This is considered a life extending surgery, because as we all know, this bastard of a cancer will not just die with removal of current cancer cells, it will come back, because there is no cure for mesothelioma … like I said before, it just sucks in soooo many ways. There is also the search for the PD-L1 gene in the hopes of doing immunotherapy—which is now considered a possible new treatment angle (instead of the surgery). So, we still have options … though, fewer than we would like and time is definitely not on our side.

So, Randy, the Honey Badger of all Honey Badgers, is on the hunt for the latest and greatest treatments for me, while I am playing the waiting game in the best way possible … and you know I am not a very patient woman….that damn Fluffy doesn’t know when to stop … dammit!! And while a lot of people would lock themselves in a dark room and scream about the injustice of it all, I decided to sand and stain patio furniture and make an outdoor living room at our home, which is lovingly known as Rocknpine …

Randy and I, along with the greatest support of family and friends, will journey forward in this crazy cancer battle and do the best we can in dealing with my out of control life dilemma … your support and understanding means more than you know……so know as we are plugging forward and doing our best to cope … the support from you, all you fabulous peeps—far and wide–moves us forward and that is priceless!!

Sunsets-I have always been enthralled with them- every chance I get, I will stop and take that 15 minutes and slow down and watch the sun’s glow go into the horizon.  You just have to face the facts, that sunrises may be filled with a little bit more of color — but are so damn early, you gotta really, really want to see it.  I myself, am very happy to have just witnessed one of the most spectacular sunsets of my days … yes, Funk Caye, Belize, is where I am writing from and enjoying some cocktails with new friends and old!

I have to tell you, I was a little pissed about the wheelchair assistance on my journey to Belize …it really hurt just a tad  …but traveling with my brother Chris was great (thanks Chris!) … he didn’t make the normal 24-hour stay rule, but we had a wonderful time while he was in Belize at The Banyan Bay Villas.  Very cool pool, with some very territorial iguanas … very tasty stone crab and Belikin’s local beer for dinner and before you know it, we are dropping Chris off for his journey home.

We stayed at the villas till Saturday morning and then puddle jumped our way to Placencia, Belize … that’s right BELIZE!!!  I am pinching myself every chance I get, I am in Belize and have been snorkeling everyday.  We have done 9 snorkels so far … 9!!!  And today is only Wednesday. I am proud to say that I have been on each and everyone of them!!  Now, I may not have been the last one  out each time — but snorkeling can be ever worldly, I am in the aquarium of the sea and it is so freakin’ beautiful … Belize is truly the place to be for divers and snorkelers, just truly wonderful waters and marine life.

 

We are on a 59’ catamaran yacht, The Affinity, with our spectacular crew, Captain Dave and First Mate Patries, and fellow guests … Nancy from Maine, Vic and Sue from Texas, Jeanine, Eli, and Mary Rose (my besties and snorkel buddies), all from Boston and me of course.  It is very very special that for 7 days this group really mesh and become a family — but it happens each and every time. Thanking my lucky stars that I am here and enjoying it all while keeping Fucking Fluffy at bay, which is a full time job in itself!  So, I will accept the wheelchair assistance and whatever else Randy wants to throw my way, I AM IN BELIZE and enjoying every second!!

 

So I will leave you as I get ready for another scrumptious meal with newfound friends and some golden oldies too.  Life is way too short spending it not doing absolutely what your gut tells you.  So I am wasting no time traveling and spending as much time with family and friends as possible.  Today it’s Belize … who knows where I will end up next???  Don’t be surprised if I show up on your doorstep ……. Always ready with a smile and embrace ….

There are celebrations throughout our lives that define and steer you on a course.  Now the choice that you have on this journey is totally up to you:  where you are at that moment in time … and how you choose to use it.  I had the extreme pleasure of celebrating with family and friends on my Mom’s 80th birthday…….it was great to go back to my hometown of Cincinnati!  It was wonderful spending 4 days with my Mom, doing nothing in particular, but enjoying time together.

Now Janie, of course does not like to be the center of attention, nor does she feel that raising seven children during the 60’s and 70’s was anything special.  I don’t think she realizes that she is the glue that kept the Kossen machine running.  So, it is with extreme pride that I highlight my Mom, Jane Kossen, for one, being such a special lady and also for never giving up to circumstances that she had absolutely no control over.  I have to say the team of Janie and Jim, had their tough times, but made it through it together for nearly 60 years.  I have to say, my Dad was smiling down at his bride as we gathered to celebrate her life!

I, for one, am thankful for being a part of the party—-because you all know that the California Smerik’s do love a party……I think for my Mom, having all her children and 20 of her 23 grandchildren there, was icing on the cake.  And the extended family of her sister my Aunt Martha and some of her children was beautiful.  Let’s not get me started on the crazy extreme gift that Randy organized—what a deck you created Mom….the gift that keeps on giving….a personalized deck of playing cards with all the Kossen’s accounted for–crazy, crazy!

I am in a great place right now, pain management is still an ongoing issue,  totally learn as you go…..but I am actually sending this post as I am sailing the waters of Belize…..life is good and while I can, I am going with all the gusto I can muster.  Waking each day, with a truly blessed smile on my face is something I treasure, as I do the fabulous sunsets, the beauty that is my family—Randy, Brian, Tommy, Elisa, and Katie…..you folks are my rock!!  You keep me grounded and loosen the reigns when needed.  So, as I enjoy the spectacular beauty that is Belize….I toast the wonder that is my Mom, Janie, I love you like no other, can’t wait till you make your next journey to Poway, because I will be there, with open arms and hugs that never end!

Pain Management—now you would think that it would be a total no-brainer for a child who came of age in the 70’s … but it is not as easy as it may sound.  I have been so lucky … in the fact that for the first four months of battling mesothelioma … I was basically pain-free.  Now, I am not saying it was a total walk in the park, but for me the after effects of chemo and the clinical trial drugs did not have the now “ever present” 24 hour a day dealing with pain.

I attribute a lot of this with first of all, my strong family and friend base … no one can have you forget your misery like your friends and family … and next, I would say that starting and maintaining weekly acupuncture therapy had a huge positive effect on me in maintaining a pain-free environment.  And as I feel better, I branched out and traveled, and with travel, it seems that the acupuncture therapy was the first to be rescheduled.  Now, in hindsight, do I wish I had maintained a more structured therapy with RiAnn, who by the way is amazing at what she can do with a needle and moxa, absolutely…..but, would I have truly changed any of the amazing trips or experiences that I have been able to enjoy in the last few months, no way.

Fortunately for me, I really did not experience a huge amount of tumor/body/nerve pain until mid-February.  At the time, I thought maybe I was overdoing things … you know there has to be a reason, besides the reason you don’t want to hear … and that reason being my cancer was progressing to the point that I could no longer be involved in the clinical trial at UCSD and would once again be doing chemo — 2 weeks on, 1 week off.  This schedule will continue until 1) The chemo doesn’t work anymore or 2) I am eligible for another clinical trial … either in San Diego or at the NIH in Bethesda, Maryland.

PAIN has become an ever-present daily part of my being.  Sadly, it is totally a “learn as you go” process.  I have a Palliative Team-Doctor, Nurse and Social Worker that we have been in touch with for the past 4-5 months, whose main goal is to maintain a quality of life for me that works for me.  WE started out slow with Norco, then moving on to Percocet and finally pulling out the big guns of using both oral and liquid oxycodone based drugs (yes, oxyCotin).  This all occurred rapidly for me…..more rapidly than I care to admit.  No one has ever said that: NO, you shouldn’t be behind the wheel of a car, NO, you shouldn’t be making any crazy life altering decisions under this medication … but, Randy and I decided about 3 weeks ago, that driving truly isn’t an option anymore.  So, now just consider driving Miss Peggy when you want to do a Happy Hour—I am your girl, as long as you can give me that ride!!

I try to describe what this pain is all about … I have chosen the dog analogy … he may be growling at a distance, he may be yapping at my feet … but when I feel him gnawing at my insides, specifically on my left chest area…that dog needs to be taken to task … cause I really cannot abide by that.  Does anyone know what Fluffy, the dog from Harry Potter, looks like??  He is the one that I try and keep at bay … and with all the pain management, I am doing my best … and will let you know who is coming out on top … hopefully it will be me!!