Author: peggyisawesome

There is something about the open road that is soooo mesmerizing.  Randy and I had the great fortune to be able to hit the road with no more in mind than heading north to the Mt. Lassen / Mt. Shasta area.  So, we made our way on April 9 to rediscover/reconnect/recharge ourselves with a road-trip of epic proportions!  First of all, it has been forever since Randy and I have spent more than 1 hour driving in a car together.  There was a definite learning curve on the driving suggestions…..not much more needs to be said on that topic.

We are cruising I tell you….the Tesla is built for a road trip….Randy manages to drive a few hours until we call it a night in Mojave CA….not to far from Bakersfield.  The kids will be happy to know that we will dining in style at Denny’s…..absolutely not my first choice, but it will do.  The next day starts early enough….charging the Tesla, steers us in the direction to travel….Eureka is our goal today, but it is really far….like a 10 hour drive….kinda crazy…we make it…stopping in Ukiah for dinner, I strongly recommend the Ukiah Brewing Co., they treated us well that is for sure!!  We make it to Eureka……happy at our B & B, Carter House Inns, are we staying 1, 2 or 3 days???? We will see.

So happy to make it to Eureka…cannot wait to explore the Redwoods and the surrounding area….we hike the Lady Bird Johnson Grove Trail….just spectacular Old Growth Redwoods…so majestic.  There is a 1 ½ mile trail, with my handy hiking stick, Randy and I traverse….it is so quiet and the way the light filters thru the trees, just a beautiful hike to enjoy.

 

Whether it be Chapman Rock Shop or the “Avenue of the Giants” or a New Orleans type Speak Easy, complete with crazy wonderful jazz band, it was great to do it with no medical appts on my mind, or scans or doctor’s visits…it was a wonderful 4 days to recharge and we could not have asked for better weather or surroundings.  So as we travel back home, we do so with just a little regret….because it is quite wonderful to know that you can reconnect with that partner that has been a part of my life since I was a mere 18 years old….now that is really kinda crazy to think about!  Randy, I thank my lucky stars everyday….I could not travel this road without you…..Love You like no other.

Now I have been one Lucky Lady as far as side effects from my chemo treatments…..I mean, I was nauseous, but did not have gut wrenching vomiting….I didn’t lose one strand of hair…..I mean, LUCKY…right??  Well, for me the real kick in the ass was this little side effect that I know now as neuropathy.  Neuropathy is a condition where you have tingling, numbness and a general issue with feeling your hands and feet.  For me, the whole not having full sensation in my toes is a definite issue.  I mean, wearing sandals is an issue……and let’s not get me started on my heels…wearing heels has definitely taken a trip to the curb.

So, know when you might see me and I have a tendency now to wobble a bit and may even stagger….it is not that I have had too many of Tommy’s fine cocktails…it is because I have an issue with the damn pins and needles in my toes….it is definitely an eye opener, because that is something that you just take for granted.  FYI….I am currently on some new meds for this and thankfully they are helping…but for now neuropathy…the word of the day in my world.

 

That is, another bucket list item….Last weekend I spent an incredible 4 days exploring Austin Texas with my forever friends—we have known each other and have been hanging out  and partying for forty years already.  Well, that just makes me feel a wee bit older—but to know these strong, beautiful women and go through marriages, children and now grandchildren is just amazing.

We have shared many things and sadly cancer and the struggle through treatments, health crisis and family dealings with this all consuming battle has reached my friends….not only am I dealing with mesothelioma, but my friend Cheri has been dealing with Stage 4 melanoma since February of last year…..just 6 months prior to my diagnosis.  Like I have said—I really do not want to be part of this club…to have myself and Cheri deal with this together is both shocking and grateful—shocking that 2 members of the Fabulous Five are battling cancer, but grateful because I know when I start to go down the rabbit hole of despair….I have someone to talk to and sadly the cancer club begins.

But, Alas…..Austin was wonderful…Dottie, Karen, Mary, Cheri and I meet at the airport and travel to our rented house 15 minutes out of town…..we are 5 of the most inept, directionally challenged women on the face of the earth….I believe we did 5 turn-arounds…I mean 5!!!  We arrive, finally, have great dinner at “The Grove” and head to HEB for late night grocery shopping….hilarious….do we have enough wine?? Are you sure??

We hit the ground running Friday morning for a tour of the “Austin City Limits” complex, where music and Willie Nelson and others have been a staple for years with live broadcasts.  We also head to Barton Springs and search for the ever elusive Stevie Ray Vaughn statue (Karen found it!).  After a full day we head home for wine, pizza and Game of Things!

We have a great brunch at the house and head off to the Capitol for a tour….El Mercado for margaritas of course and let me not forget “The Working Women’s Museum”  and SoCo…South Congress for shopping, drinking and music.  We find all at South Congress and head to the Continental Club—a dive bar with live music and cold beers…you cannot ask for anything more!!

Dinner that night is at Threadgill’s where Janis Joplin was known to sing a tune or two…head to our house for music, games, police calls and more….I will just leave you all guessing on that one.  Sunday has arrived way too quickly, we are on 6^th street downtown, early morning shopping, hanging at the Driskills Hotel, patio lunch dining and searching for the best Austin BBQ sauce…we were able to barely scratch the surface of  fun things to experience in Austin and I couldn’t have picked a better group to do it with.

 

I have been a traveling fool for the last three weeks!!  I gotta tell you, it has taken me a few days to recoup, but I definitely had a blast while I was on the road again.  Less than 48 hours after I returned from my Nat’l Park Adventure II—I was on a plane once again—this time, with the family—Randy, Brian and Tommy to Bethesda Maryland.  First of all, Randy and Brian were attending the International Mesothelioma Symposium (click here) in Bethesda and most importantly to see if I qualify for a clinical study which is being held at the NIH….National Institutes of Health.

So, while Randy and Brian were at the Symposium, Tommy and I made a day trip to DC….lots of walking for me, which is good, I have to build my stamina that is for sure….but, I do take a lot of breaks, which is new for me….cause you know I hate to be the one to slow down the group….I am used to being the one leading the charge!

We visited Washington DC at the optimal time for the annual Cherry Blossom Festival, the Mall and Tidal Basin were in their glory with the cherry blossoms  in full bloom….we could not have picked a better 3 days to be there.  Tommy and I spent the afternoon at the National Art Gallery…I was super amazed   with their impressionists collection—I have never seen so many Monet’s in one gallery—totally beautiful….pictures are great, but to be within inches and see the brush strokes from artists that are well over a hundred years old is just breathtaking!  We also spent some time at the WWII Memorial..it has been 15 years since I was in DC, so I really wanted to see the newest Memorials on the Mall, I really wanted to make it to the MLK, but I was sorta done for the day, so alas we hike back to the car and head to Bethesda.

On the following day, Tommy and I head to Great Falls National Park in Virginia (see website here) —it was a beautiful day and to spend it in the outdoors was fabulous!!  It was kinda crazy walking through a canal that George Washington engineered so many moons ago….didn’t think I was such a history buff, but I gotta say, it was very cool.  We took it for an easy day, as the following I day I would be going through a battery of tests at NIH to see if the clinical trial would be a good fit for me.

And I was totally OK with that…we all attended a mixer for the Mesothelioma Symposium that evening, which also is OK……I don’t know why, but I have not embraced this group of doctors, specialists, survivors and their families.  It is almost like….how do I fit in??  Am I really a member of this group of people that live and breath Mesothelioma day in and day out??  I believe that I haven’t truly come to terms with my disease…but how could that be…I mean I have been in treatment since September 1…..and I finally realized that I really don’t want to be a member of this cancer group…..I really want to fight this fucking disease, but at times it certainly wears on me and my family and friends….I want to turn back the clock 30-40 years, when this tiny time bomb became part of my being….but that is easier said than done.

Sooooo, my Wednesday was all about testing at the NIH…gotta tell you, getting into that place was crazy…30 minutes of scanning luggage, cars and people, we finally make it in.  Long story short, after lab work,  PET Scans and CT Scans, we meet with the doctors and find out that I do NOT qualify for the study.  But, the reasons why are the silver lining in the clouds, from the CT Scans, they determined the Gemzar chemo that I am currently having, is working….NO progressive tumor growth in a month..Yay!!  Now, I know it won’t be this way forever, I mean eventually there will be more tumor growth and I will have everything in order to be able to get into the clinical study.  So for now, I am plugging along, feeling really good and enjoying each day as it comes.

Oh!  Watch this 7-second video of Tommy and me on the Merry-go-round on the National Mall.   Click here!

 

I have truly been on the road again!  My brother Andy and I went on the ultimate of Nat’l Park trips—priceless.  We started our journey on St. Patrick’s Day around 2:30 in the afternoon.  Andy, drove all the way to Primm Nevada before calling it a day—between me, having chemo that morning, or him being slightly tired from traveling all day … we were ready to park our little RV.  Oh, did I forget to mention, that instead of my Mini we were traveling in style with our little 19’ camper.  Neither Andy or I typically glamp (glamorous camping)—so  this was indeed an adventure!!

What a fabulous trip—beginning with witnessing  sunrise at Kolob Canyon, the Western-most part of Zion Nat’l Park….the ever changing colors….spectacular.  This is the last park stop of our previous trip in September, so it is a bit poetic that we begin our NP II at the same spot!!  Next stop—breakfast at the All American Classic Diner in Cedar City Utah……we then start our journey on 14E…..a very scenic and beautiful drive towards our next destination, Bryce Canyon Nat’l Park.  The spires and Hoo Doos throughout the park are awe inspiring!!

After touring through Bryce we literally drove up some random road in the backwoods of the Dixie Forest and parked our camper for the night.  There is something about that first cold Corona of the day….beyond enjoyable…..in the midst of forest…..hanging with your brother and absorbing the good vibes that surround you.  I am  ALWAYS ready to take on any good vibes.  The next morning we had a truly scrumptious breakfast at Hell’s Backbone Grill in Boulder Utah on a referral from Barbara and Richard—thanks guys, that was a truly wonderful spot for the soul!  We head to Capitol Reef Nat’l Park, we take the scenic drive and hike in on a trail just beyond the visitors center…..sadly, my stamina for hikes not so great…..

Needless to say–all wimpiness aside–we visited 8 parks in the course of 6 days….Kolob Canyon, Bryce Nat’l Park, Capitol Reef Nat’l Park, Arches Nat’l Park, Canyonlands, Mesa Verde Nat’l Park, Petrified Forest Nat’l Park and finishing at Joshua Tree.  We actually made it to Anza Borrego State Park also–It was quite the adventure to say the least….magical in every sense of the word.  Thank you Andy for showing me all the wonder that is at our doorstep!

Can I describe in a few words how much this trip means to me–not likely…the unending miracle of stars on a clear Utah night or the amazement of the cliff dwellings from many moons ago or the super bloom of wildflowers that were like a carpet of colors in an otherwise desert landscape–priceless.

 

A lot has happened since I last posted—lots of challenges…. First of all, I am back in the saddle as far as chemo treatments are concerned.  I am getting chemotherapy in San Marcos through Kaiser every Friday for 2 weeks and then I have a week off.  You know I totally enjoy those weeks off…ha ha.  Chemo has a tendency to wipe me out, so I am glad for the down time.  For the past few weeks, pain has now become an issue…so dealing with that and finding the right “cocktail” that works for me has been a challenge.  Also, Randy is beyond honey badger mode–searching high and low for a clinical trial that has my name all over it!!

We are traveling to Bethesda Maryland at the end of the month—I will be undergoing 8 hours of fun at the NIH (National Institute of Health) on March 29, and hopefully all goes well and I will get into that clinical trial.  That would be wonderful—except—the trial is in Bethesda Maryland and it’s 8 days there and  then 2 weeks off.  So I will enjoy bicoastal living for a few months!  So, wish me luck!

We have definitely been enjoying the beautiful southern California weather these past few weeks.  My nieces, Katie and Kellie were in for a visit last and it was so nice to sit back and chill.  Can’t say we did anything wild and crazy—but so much fun!!  Kellie even made it to the desert—in search of the super bloom!  We had a great weekend!  The Anza Borrego Desert State Park is experiencing an epic super bloom of wildflowers—we spent last Sunday and Monday camping and driving in search of the fields—I mean—a carpet of flowers.  I got to sleep in my own Taj Mahal—Thank You- Brian and Elisa and Tommy!!

That brings us to today, Friday March 17—Happy St. Patrick’s Day!!!  I am set to embark on a journey…..my brother Andy is here and we are about depart in the “Adventure of Nat’l Parks II”, off to Utah we go!!

 

Tick Tock…tick tock…..

The waiting game is a well refined art, that I am just getting used to dealing with.  I am,  by no means a patient woman, so for me to have scans taken and having to wait for the expert to explain it in layman’s terms what exactly they mean, like I said, I am not a patient woman.  Yesterday, Randy and I finally got some answers and sadly they are not good.

My CT scans show a 30% increase in the size of the tumors that are in my left lung…not good…what this means for me is, I will not continue with the clinical infusions at UCSD….basically it is not working on the cancer and so we need to find something that will work.  We are currently in the search for a new clinical trial that I can get involved with, Randy is actually on the phone with a medical center for a clinical trial as I type this note.  I am also trying to get into a new chemo infusion schedule with Kaiser, hopefully starting this week.

I have been blessed with a large family and friend base.  This past weekend, my brother Jimmy visited for the weekend….it was four months in the making….so, while I wait for our next step in this project, that we know as the cancer battle, I will continue to enjoy family and friends, having brunch, complete with southern style biscuits and gravy (Thanks Jimmy!), search for the super bloom of desert wildflowers and living life large as ever.  Thanks for all the love and support that I receive from you, my blogosphere friends, and I will keep you all posted.

 

 

I consider myself one Lucky Lady……I have had an amazing few weeks.  To have so many  friends and family to make the trek to see me……simply wonderful!!  My good buddies Dottie and Greg were here at the end of January…….absolutely made me look outside the box for my normal…..I mean, heading up to LA to check out an art museum—totally out of my realm of possibilities!  Soooo very happy to make the journey to Pasadena to see the Norton Simon Art Museum, there was an incredible Vincent Van Gogh exhibit and more pretty amazing impressionists, and it is one of those places that I would never have found on my own.  Thanks Dottie and Greg!!!

We had a fabulous weekend….checking out wineries, lunch on the beach in Del Mar and of course learning to make some extraordinary pizza from Chef Brian.  Greg and Dottie have known Brian for his entire life……taking a cooking class was the cherry on top of the cake!

So for me, the eternal water baby, a true Aquarian, my birthday arrives at the beginning of February……..and boy was there a celebration!!!  It began with my out of town arrivals, Jeanine from Boston, Ann from Cincy, Jackie from Orlando and Diane from Akron…..I can’t tell you all how much it meant for me to have you all travel across the country and make my birthday extra special.  A fabulous party on the 9th, which included a live band with an oh so memorable rap …..Randy and Brian and Tommy really outdid themselves!! This followed by a girls gone wild only weekend.   And we had an amazing personal chef come to make us all dinner at the house … and it was Chef Accursio himself!!  So much fun!  Tommy helped cook and serve.   Simply Fabulous.

 

I can’t thank Mary and Joyce enough for making it a truly kick ass time and followed by some family time in the mountain community of Idyllwild.  Like I said, I am one Lucky lady and I treasure every single second!!

 

January has certainly started with a bang at the Smerik household and that is because, for a change, we have a few absolutely wonderful pieces of news to pass on…..First and foremost, my oncologist considers my present state of health as stable disease…….I know that doesn’t sound great, but for me, it is very, very good …..it means that currently there is no foreseeable progression of my disease, ie., the tumors are not growing at a measurable rate.

Secondly, UCSD just let us know that I am getting the Amatuximab antibody drug.  As you may recall, the study is a double-blind with a 50/50 chance of a placebo … so we didn’t know until now.   And, I will continue for the foreseeable future to go to UCSD every Wednesday for the Amatuximab infusion.  Which is GREAT!!

Additionally, we got the go ahead for the insertion of a port and the removal of my PICC Line, this is something that I am most excited about….and the following week, my pleurx tube gets removed.  I am over the moon excited that I will have no external chest tubes and central lines when February begins!!  It is a quality of life decision, that  I am soooo glad to be able to make a reality.

So, in closing, things are looking great this first month of 2017 and I, for one, cannot wait to see what is just around the corner.

I have been truly blessed with a wealth of friends and family! January has turned into a banner month of special visitors—last weekend my very special forever friend Karen and her husband Stephen traveled from Boulder, Colorado, to spend some time with me. You know I have written forever friends on a few posts, and that is because I have a group of friends, that have stayed connected since high school, literally 40+ years, and that constitutes my forever friend label. So I give a special shout-out to Mary, Cheri, Dottie and Karen, the girls who have been there it seems like forever—but actually only a few decades, I love you guys and don’t know what I would do without you!

So happy to spend time with Karen and Stephen, these guys have been scouring my bucket lists in hopes of doing something special…..and they totally succeeded when they signed us up for a private lesson in the process of creating stain glass. We absolutely had a blast—I gotta tell you, there are some things I loved about the process and there were things that I really wasn’t that good at and will totally need more practice at to master. But, I had a totally awesome time learning about how to create this art form from scratch!!

 

What a fabulous time….watching playoff games—Green Bay Packers….what a finish….nothing like going to a sports bar in Poway to find the Packer fans in force!! There is something about spending time with a friend—no words are needed, no big plans, just sitting back and enjoying hanging out, that cannot be replaced by anything else. Love you Karen and Stephen, thanks for making the trek west, cannot wait to cross paths again!!

The changing of the guards has occurred—my Mom, Jane, arrived yesterday and she brought along 5-6 days of rain with her….don’t worry Mom, I won’t hold it against you!!