Life Turns to a New Direction

This is a very hard post to write.  Three weeks ago, my life changed in an instant.  No real warning, no time to prepare, no time to do anything but focus on the new firehose of reality that was now rapidly propelling me in a totally new direction.

I know lots of travels and photos have transpired between my last blog post (my summer volunteer ranger gig at Bryce Canyon National Park last summer) and now.  I hope to fill those gaps with backdated posts in the coming weeks as I get the time/energy.  

But this post may very well end up being my last, chronologically speaking.

After spending the last three months trying to enjoy touring central Mexico (plus a 3 week jaunt over to Cuba) with my fellow View RV friends Hans and Ursula, what seemed initially like a minor back muscle pull in mid-November eventually grew into excruciating, screaming back pain by the end of December.

As we celebrated Christmas day at Lake Chapala looking onto this spectacular scene with fellow RV friends, Jerry and Becky, we all knew something had to be done.

I made an appointment the very next day with Dr. Santiago Hernandez at Chapala Med.  Dr. Hernandez, like me, had grown up in Chicago.  I figured that alone should make him better than most other doctors in the area!  I was able to get a same-day appointment and was immediately impressed by the thoroughness of his new patient exam, his caring, genuine personality, and his exceptional English skills.  This was a doctor I could trust with my life.  Little did I know how soon that would be put to the test!

On Tuesday afternoon, December 27, I left my RV not realizing I'd never likely see it again.  Bing, bang, boom-- full-time RVing finished in an instant.

Hans and Ursula drove me in the Tracker up to Guadalajara for an MRI that Dr. Hernandez had ordered. As the MRI lab was near Dr. Hernandez's home, he said he'd stop on his way home to watch the test real-time so he could get the results immediately from the radiologist rather than wait a few days for the report.  (What doctor in the U.S. does that kind of thing for his patients?).

Well, it turned out to not just be a patient-friendly decision, but a potentially life-saving one as well.

The results were nothing short of stunning...to both me and him.  The good news was that my spinal cord was intact and not affected.  The bad news was that I had a 6 cm cancerous tumor on the top of my psoas muscle that was also wrapped around 2 vertebrae.  The vertebrae were so compromised, they were now just bone shards encased in tumor tissue.

Dr. Hernandez said that any false move or fall could instantly parallelize me, and said that I had to immediately go to the hospital for bedrest and surgery.  I was shell-shocked and dumbfounded.

After bringing Hans and Ursula in to give them the news, Dr. Hernandez escorted us to a private hospital about 2 miles away.  He then rolled me in a wheelchair to the registration desk to help translate the admitting process, and then got me up to my private room.

Mexican hospitals (even private ones) operate under the assumption that family members will stay with the patient continuously to assist them in eating, bathing, bathroom, etc.  The hospitals only have nurses-- not any "aides" (who do all of this stuff in the U.S.)  So immediately, Dr. Hernandez asked who could stay with me on my 1st night at the hospital.  Ursula suddenly found herself volunteered, and the hospital gave her a small bag of toiletries and some bed linens for the small sofa in the room. 

The next few days were filled with emotional ups and downs, but 2016 ended on a humorous finale when both Hans and Ursula decided to stay the night with me for New Year's Eve.  I still don't quite know how they managed to pretzel themselves onto that small sofa, but their years of sailboat expertise likely helped!  It meant the world to me to be able to ring in the new year with such dear friends, and to not have to be all alone.

On January 1st, professional help finally arrived.  Dr. Hernandez located a service who provides bi-lingual nurse's aides to foreigners like me.  The only problem-- they only had a male nurse available on January 1st.  I was o.k. with that, so in walked an early-50's Mexican man named Ismael who would serve as my continuous caregiver. 

Over the next 2 weeks, Ismael became a member of the family.  He also gave me great insight into the Mexican way of life, and most importantly, he renewed my faith and spirituality in the long talks we had before and after my surgery.

My brother, Randy, arrived from Vail, CO on January 2nd, during one of his busiest weeks of ski season.  His boss said to just go and take as much time as he needed-- when it comes down to it, family is all that really matters.

Dr. Hernandez recruited two of his most-trusted colleagues to perform my marathon surgery-- Dr. Juan Delgado, a surgical oncologist; and Dr. Ernesto Ledezma, a neurosurgeon.  The surgery was January 6 in Guadalajara, and lasted over 10 hours with major incisions down both my abdomen and spine.

I spent the first night in the ICU and recall quick visits from Randy and Ursula that, even in my drugged up state, seemed a bit too cheerful and a bit "off."  Something had not gone right.  I was able to move my feet, hands, toes, and fingers, so the good news-- I wasn't paralyzed.  But I had the sinking feeling that they had not been able to remove all the tumor and/or it had spread to my bloodstream.

Dr. Hernandez broke the news to me early and quickly the next morning-- only 90% of the tumor could only be removed.  The remaining tentacles are currently tapped into my aorta and other blood vessels and impossible to remove surgically.  The rest is hoped to be removed (or at least temporarily halted) via radiation and chemo.

My vertebrae could not be removed/replaced, so the neurosurgeon used bone cement to rebuild them and, literally, created a "bird cage" of rods, pins, and screws around that area of my spine to keep the vertebrae from collapsing.

The surgeons did an amazing world-class job considering what they had to work with.  Now, just  2 weeks after surgery, I'm out of the hospital to a rehab center, walking almost without a walker, and getting around without much pain.  It really is quite amazing how fast the body can recover. 

But my prognosis is not rosey.  Had I done nothing (no surgery), I would have survived only another 2 months at best.  Now, with surgery and an aggressive round of radiation and chemo for 8 weeks, the doctors here say I might get another 12-18 months of quality time if all goes well.  

Of course, there's always room for a miracle.  I can't believe the hundreds of friends and family who have told me that not only are they praying for me, but their hundreds of friends and fellow church members are praying for me as well! It might sound contrived, but I really have felt this amazing embrace, and it most certainly is helping!  So, please, please, please--- keep those prayers coming!

When journalist Gwen Ifill died of endometrial cancer this past November, I kept wondering "how on earth does someone die from this disease?  It's got a 95%+ survival rating if caught at Stage 1 (which is when mine, and most others are indeed caught).  Last summer, my Chicago oncologist was so confident, she said that my survival was more like 99% since I'd had the 3 rounds of brachytherapy radiation as an added safeguard.

So how does a smart, amazing woman like Gwen Ifill die from such a disease?

None of us will know Gwen's medical details, but I now know how this happens.  Humans make mistakes.  Medical statistics aren't perfect. Cancer hides from even the most skillful surgeons, and strikes later with a vengeance.

Perhaps Gwen knew from the start she would be one of the unlucky ones.  Perhaps I've been fortunate to not know that until just a few days ago.  But the sad truth is that, yes, with uterine cancer, a seemingly invincible, 95% survivable, Stage 1 Adenocarcinoma can suddenly bite back as a deadly Stage 4 Clear Cell Carcinoma (which is what I am now fighting).

Over 10,000 U.S. women will die of uterine cancer this year.  That's 14% of all women's cancer deaths (Breast and GYN).  And yet, of the $1.15 billion that goes towards women's cancer research each year (via NCI and private charities), less than 2% (a paltry $18 million) goes towards uterine cancer research.  

Think about these numbers for a minute, and think about the rapidly growing number of women being diagnosed with uterine/endometrial cancer.  

Something more must be done. We need our fair share of funding!  

We need a research charity focused solely on Uterine/Endometrial cancer, because the single catch-all GYN cancer charity operating in the US right now (for ovarian, uterine, cervical, vaginal, vulvar cancers) is simply not effective, and not getting the resources directed towards research.   

Additionally, if my survivable Stage 1 cancer can suddenly end up as a Stage IV, something seems very wrong with the current GYN oncology "Gold Standard."  I hope that any fellow GYN cancer survivor will push their providers for at least a baseline CT or MRI test when they are initially diagnosed.

The "Gold Standard" advised that a biopsy and vaginal ultrasound were the only diagnostic tests needed when I was initially diagnosed in 2015.  No need to do a CT scan or MRI to check the rest of my body to see if cancer lurked anywhere else (and it might possibly have already been there as early as 2015).

Last summer, when I had my 1-year follow-up with my oncologist, again, the Gold Standard advised that no testing of any kind was needed-- simply a pelvic exam and that was it.

Not until I finally developed Stage IV symptoms a few months later would an MRI finally be ordered.   That sure doesn't seem very "Gold Standard" to me.  It's an outrage. 

The U.S. healthcare system is seriously flawed in its approach to preventative and comprehensive medicine.  Where would I be now if a simple CT or MRI had been done earlier?  Especially if US healthcare pricing were more on-par with the rest of the world (i.e. my Mexican MRI cost just US$300).

Next week, I will be flying home to seek care at one of the premier cancer centers in the U.S.-- M.D. Anderson in Houston.  I'm told if anyone can give me the most state-of-the-art advanced treatment for my cancer, it will be them.  

And yet, the back of my mind still worries.  Will my insurance cuts corners and deny coverage due to the outrageous U.S. costs?  Will my Obamacare plan get cancelled due to new Congressional actions leaving me with no coverage at all?  Will I have been better off staying in Guadalajara (where the doctors are equally skilled and costs are a fraction of the U.S.)?  Only time can tell.

Today would have been Millie's 12th birthday.  I had originally planned to be on the same beach in Mazatlán (as where this picture was taken) to spread Millie's ashes in a place she loved so much.  I struggled over that decision as there were so many wonderful places that Millie loved to swim and play Frisbee.  How could I ever narrow her final eternal place to just one? 

But now that events have turned, the answer is so much clearer than ever before-- I will now hold onto Millie's ashes longer, until her's and mine can both be spread together.  

A few years ago some of my mom's ashes were spread across a patch of wildflower meadow beneath a lone pine tree at the far end of this gorgeous small lake in Colorado.  I can think of no finer place for Millie and I to return to this earth.

I hope this post does not leave readers with the impression that I'm giving up on life.  Far from it!  I'm staying positive, and praying hard that I might be one of those 15% who will still be here 5 years from now and beyond.  I will do whatever it takes to get these remaining tumors zapped from my body as fast as possible.

I won't shed tears over this prognosis, I will just relish each and every quality day that I am given.  There are no guarantees in life.  Even having this new "expiration date" doesn't mean I'm exempt from getting whacked dead tomorrow by a passing bus.  Life turns in an instant...both good or bad.

I am grateful for these last few years of complete freedom to explore and photograph beautiful places, volunteer for wonderful national parks and refuges, and reconnect to my family and friends in deeper ways than I ever could while still in the working world.

Certainly, I wish I had retired (or changed careers) sooner to have even more quality time, but I don't regret for a minute the decisions I made to simplify my life, reduce my expenses, and live a more purpose-driven life.  My thoughts on my "About Me" page still hold as true today as they ever have.

I now head to Houston to fight the good fight for the next few months, and will head to Colorado after that where my brother and his amazing wife and family have made the most selfless decision imaginable-- to take me in and care for me in my final days.  

I am beyond blessed.

Thank you for following my journey these past few years.  I've greatly enjoyed meeting and corresponding with so many of you.  Never stop living your dreams!