Tuesday, October 24, 2017

Colorado Summer

In early June, Carol and I headed over to Houston's Hobby airport on a sunny, hot, and humid morning.  She had a one-way flight back to Chicago, while my one-way flight would take me to Denver.  Had to fly around one thunderstorm in the panhandle, but otherwise, another smooth and successful flight as a wheelchair patient. 



Randy and Karen were waiting for me in Denver when I arrived.  I had been worried what the altitude change might do to my blood pressure or breathing, but I ended up doing just fine.  After a stop for lunch, Randy drove us back up into the mountains to their house in Edwards.


The first week or so in Colorado was spent getting my bags unpacked and going through all my valuables that Hans and Ursula had brought back from Mexico and given to Randy.  Everything from car titles to camera lenses to Millie's ashes had all made it to Colorado safely from Mexico.  Amazing!

Karen also had some fun planned for us.  Cirque du Soleil was in Denver with a new show called "Luzia" that featured a Mexican theme.  As I'd never been to a Cirque show, no time like the present to check it off my bucket list!


Our seats were in the 5th row and the show was absolutely incredible!





Vail in the summertime always seems to have something going on, and this summer was no different.  One weekend, we joined a huge crowd at the GoPro games--


Another evening, Karen and I attended a ballet performance in Avon--


Vail had a big celebration for Independence Day.  First, the morning parade thru town featuring the lawnchair brigade--


and then a free pops concert by the Dallas Symphony Orchestra at Ford Amphitheatre.  What a great time!


But the highlights of my summer were, no doubt, the reunions with Winnie.  Hans and Ursula had drove Winnie and the Tracker all the way from Guadalajara back to Arizona when I was unable to leave the hospital down there in January.  We'd found a storage place in Casa Grande where I could pay online, and all had been going great, but now it was June and Arizona temps were pushing up against 120F!  Time for Winnie (and her pretty paint job) to be rescued!

Since Randy and Karen work full-time, and I wasn't strong enough to transport the vehicles myself, my other Chicago stepsister, Holley, decided that a vacation to Phoenix at the end of June was just what she and her husband, Mike, would like.  Really?  Are you absolutely sure? 

Mike had never been to the southwest before, so a plan was hatched to not only rescue Winnie and the Tracker, but pass thru some national parks on the way back to Colorado as well.

We timed our Southwest flights to arrive in Phoenix in the evening, and even with my delayed flight getting me in at 9pm, the outside temps in Phoenix were still around 110F that night!   Driving the rental car around Casa Grande the next day, I really needed to be careful not to have my legs touch the car getting in and out-- the metal was that hot!

I was worried about how difficult the RV and Tracker might be to get started again after they'd been sitting for 6 months, but they both started up immediately without any hesitation.  We got up before dawn the next morning to start our drive-- I wanted to get up and over that big incline north of Phoenix before the temps got too outrageous.

We arrived to the Grand Canyon midday and were lucky to find one of the last 5 RV parking spots in the whole place.  Thankfully, the temps were much more pleasant in the 80's at this elevation.  I just had my little point & shoot camera, so no award-winning shots, but it was fun showing Mike the canyon for the first time.



To save time and make the trip more comfortable for everyone, we stayed at hotels each night rather than try to camp in the Winnie.   The next morning, we made our way up to Monument Valley on the border of Arizona and Utah.  Another iconic new place for Mike to see!


The little yellow Tracker was SO happy to be rolling her toes thru sand again!


and Winnie was glad to be on the road again too!



We spent our final night in Moab, UT showing Mike the gorgeous Colorado river canyon, and going for a quick drive thru Arches National Park.




Me at Double Arch!




When we got back to Colorado, I took Mike and Holley up to the top of Vail mountain on the gondola for a picnic lunch and a few crazy antics before they headed back to Chicago.  So grateful for their help and fun companionship during this trip!

Mike and I wearing our Cubs hats--


Holley and I acting like a pair of goofballs!


Originally, when coming to Colorado, I had thought I'd be flying back to Houston every month for chemo at MD Anderson.  But the MDA folks were fine with me doing some treatments in Colorado if I'd prefer.  A quick call over to the small, but lovely, cancer center in Edwards and I was now all set up to start getting my chemo there!

The staff at Shaw Cancer Center have all been amazing.  They might not offer clinical trials, or all the fancy equipment that MD Anderson has, but they also don't have the thousands of patients per day to deal with and can give each patient much more personalized care.

For instance, I was to receive a monthly injection of a drug used to keep my bones from breaking.  I'd had my first injection at MD Anderson and all went great, but here, Shaw was not able to get my insurance approved (this drug is more expensive than an IV drug that is similar but also causes more side effects).  Rather than just tell me "tough luck" and make me take the inferior drug, Shaw contacted the drug company and got me approved for a "compassionate care" program where the company provides the drug to the patient for free.  Wow!

A couple weeks later, as I was sitting in a chemo chair awaiting my next dose, the social worker walked up and introduced herself.   She had called and left me a message the week before, but I didn't think I had any needs so didn't call her back.  After chatting awhile, she happened to mention Social Security disability benefits.  I said I'd never applied because I'd heard it took years (and multiple lawyers) to get approved.  But she told me about the programs available for cancer patients-- some particular cancers are approved right away for disability even if it is your initial diagnosis.  Endometrial didn't qualify for this, but as it had now recurred and was considered terminal, they fast-track any patient with a terminal disease.  Within an hour of applying, I had an appointment at the nearby SS office the next week, and that appointment went so smoothly, that only 2 weeks later, I was approved.  I never would have considered SS Disability without the Shaw social worker's suggestion-- what a blessing it has been to be able to get back a few of those dollars I paid into SS all these past many years!

In late July, we did a family camping weekend down to Turquoise Lake near Leadville.  I stayed in the Winnie, while the rest of the family slept in tents.  It was so wonderful sitting around a campfire again and enjoying the smell of fresh pine.



I thought I'd be able to do more, but the bone cancer in my shoulder really makes my right arm only about 50% usable, so I wasn't able to do a lot of RV tasks, nor could I think about kayaking at all.  So, on this day, Randy got to kayak that beautiful lake while all I could do was watch.


By the end of July, thanks to my new chemo drug, my hair had now grown back enough that I could stop wearing chemo caps and baseball hats.  Just in time for a visit from my dear old workmates, Eileen, Margo, and Margo's bulldog Stanley.



In mid-August, I returned to MD Anderson for an updated CT scan and to see how "chemo # 2" had worked.  I was feeling pretty good, so was hopeful that I could continue.  But, unfortunately, the lemon truck arrived.  The 2nd chemo drug had proven to be even less effective than the first, as I now had bone cancer in a hip and some new small tumors growing in my abdomen. 

I assumed my MD Anderson doctor would recommend another kind of chemo or a clinical trial (as that's what he'd always said we'd go to next), but to my shock, he suggested I stop all further treatment.  He said my particular strain of uterine cancer is rare and every time he'd seen patients who were non-resistant to chemo, he'd never found a drug that worked for them, so doing anything further would likely just get me more pain and side effects than increasing my number of quality days. 

I was certainly grateful for his honesty, but on the other hand, I was still feeling good, driving, and getting around pretty well.  Not the level of health usually found in a hospice patient.  So, what to do?   We decided to make a compromise-- we'd send my pathology off for genomic testing to see what specific genes were involved in my particular cancer (this would hopefully tell us if any clinical trials exist for me), and I'd also start taking a mild hormone pill  (that might slow the cancer growth down a bit).

After returning to Colorado, and discussing the results with my Shaw team, they introduced me to the hospice group and got me comfortable with all the resources I'll have available to me in the coming months.  But all agreed that for now, since I was feeling good, I should focus on bucket list trips rather than needle pokes. 

So, with the solar eclipse only a couple days away, me and the family decided to do a fast last-minute trip up to Wyoming to see it.  We knew hotels were sold-out, so best chance would be to take the RV and find a place on public lands to spend the night.

We found a perfect little BLM campground along the North Platte river just east of Rawlins, WY and grabbed the last available campsite as the sun was setting--



We were only 40 miles south of our target area, Alcova Lake, and the paved county road next to the campground looked like it'd take us straight there, so that's how we headed the next morning....only to find the pavement end about 10 miles later.  By that point, we were committed, so nothing to do but drive the washboards!  Randy drove....while I sat in the back seat telling him what to do!


Luckily, we made it to Alcova Lake just in time and found a nice spot to park.  Everyone was nicely spread out, so we didn't have to listen to noisy neighbors.



We each had eclipse glasses to wear, but I wanted to see the action closer.  Since I didn't have my good camera gear, I first tried some of the eclipse film on my point and shoot camera lens.  Fail.  Couldn't focus.  So, I next tried duct taping the film onto my binoculars.  Score!  I was able to see the eclipse perfectly (but just not able to photograph it).


My only quick pic of 100% totality couldn't do justice to what we experienced with our eyes.  The black moon looked far bigger (and sun's corona far smaller) in real life.  But I'm glad I didn't have all the camera gear to distract me.  Totality was an amazing experience, but it only lasted 90 seconds!


It was also a great start to my final bucket list adventures.  As we drove the RV back home, we started planning out more trips for the next month-- a trip back home to Chicago, to southwest Colorado to ride an old steam engine train, a BIG trip to Kauai and Maui, and more.

My medical horizon might look pretty stormy, but at least for now, one day at a time, I'll get out and do as much as I can do and see as much as I can see.  Carpe' diem!


23 comments:

  1. So nice to hear from you again, and glad that you can get blackout there to do as much of your bucket list as possible, hope you get it all done. Travels safe and enjoy.

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  2. Carpe' diem indeed Lynne ! May you have many more wonderful days.

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  3. Wonderful summer. I'm hoping you have as much adventure and joy as this life can bring. Again, thank you for sharing.

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  4. Thanks for sharing your incredible story. Your travels continue to be fantastic as they always have been. You are back by now but it must have been hard to leave Maui, I love that place. Ha. I am happy that you are able to 'check off' your bucket list one by one, one day at a time.

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  5. You are an inspiration! Thanks for sharing, and keep on enjoying those Bucket List adventures!

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  6. Tough days hearing all that I'm sure. I hate cancer. Hopefully you have more quality days ahead. You have a tremendously supportive family.

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  7. You are “unsinkable”! Thank you for taking us along on your adventures, Lynne. We are with you. Hugs and here’s to more glorious times. Pamela

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  8. What a great summer full of new adventures! I'm so glad you were feeling well enough to really enjoy each activity. Wahoo! Great hair:) Looked like a lovely spot for the eclipse. Very clever idea to duct tape the glasses to binoculars!! Looking forward to your HI summary. Your positive attitude is wonderful:) Praying for you.

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  9. Your positive attitude is indeed an inspiration to your followers. We should all Cease the Day!

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  10. I love your bucket list! You're sure getting a lot of things checked off. And you sure do have great family and friends, life's greatest gifts. Continue having fun, and thanks for sharing! :)

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  11. Sounds like fun was had by all on the trip to retrieve Winnie and see the eclipse. I am so happy for you that some of the bucket list items are being checked off. Can’t wait to hear what other items are checked off with the help of your tremendous family and friends.

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  12. Thank you for continuing to share your adventures. Such and inspiration.

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  13. Hoping that you can finish your present Bucket List and at least another.
    We'll be rooting for you.
    Be Safe and Enjoy!

    It's about time.

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  14. I can only hope I have the grace to make the best of what life throws at me like you are.

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  15. I have followed your blog for several years, primarily a lurker. A groupie! I've learned so much from your travels. Love your photography and writing style. Thx for being such an inspiration for us solo women.
    And now we're with you on some new journeys and again you're an inspiration. Sending positive thoughts your way.

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  16. I agree with Greg... to have the grace you exhibit.... Have loved following you throughout the years. Take Care and God Bless

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  17. We so appreciate you catching us up to date with your life. So happy that you have been able to use the Winnie again. What a brilliant idea with the binoculars.

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  18. Hope you continue to have great adventures for a long time to come and sharing them with your family is extra special. You are an inspiration to many.

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  19. Lovely photos as usual...stay on the attack.
    mark

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  20. Great pictures and so happy to hear you got to go back out in your Winnie again and experience some of your bucket list items. And good to know you are surrounded by loved ones.

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  21. You are incredible, Lynne. Your positive attitude is an inspiration to many whom you will never meet. You have put more into the living depicted in your blog than most people will ever hope for. "Do not go gently into the night" Keep on keeping on.

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  22. I was happy to see that you posted an up date. You have the best outlook and you are doing what makes you happy. Keep on traveling and cleaning up your bucket list.
    that little point an shoot is doing a fantastic job. Keep on keeping on Lynn.

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  23. It’s so good to see your beautiful pics again. You are a true and beautiful inspiration to us all. One of my close family members just got diagnosed with a recurrence of the big C so I think of you very often and try to emulate some of that strength you always have. I hope these next months are filled with natural wonder and beautiful memories for you. You’ve shared all the wonders of the world with us through your blog (and your volunteering) and its always such a joy to travel along with you from afar through your writing.

    Nina

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