2013: Part 2

How It’s Been So Far

I never got stronger in 2012, although I loved our two big road trips in March and May.  I also made it to Big Island; and I spent Friday of Labor Day weekend going from swimming in the ocean by the Mauna Kea Hotel to watching the sun set and the full BLUE moon rise from somewhere above 10K' on Mauna Kea itself. 

I could tell the decline in my strength as I swam and snorkeled, and one day I barely succeeded in pulling myself out of the sea at Two Steps.  Argh!  I ended up coming home in a wheelchair, and had to walk with assistance thereafter. 

Unknown to us, my body had started shutting down.  In September, digestion was stopping.   We noticed my singing voice was weak in March, was totally not right in May, worked in October, and then . . . went away completely.  I have even been unable to sing along with the radio.  Frustrating!

So not only did I not do as well as I'd have liked in 2012, 2013 was starting off TOUGH. 

January's tests revealed cancer still in my brain and spine, and by February my body was sliding into end stage.  High heart rate and low BP, high tumor markers, cachexia, choking, an inability to swallow or breathe properly, and so forth.  At one point, my legs and feet were purple.  I looked near death, and everyone was so worried and stressed, especially during the lengthy episodes where I couldn't breathe.  It became obvious my autonomic systems were not working properly.  We’ve spent from February on dealing with that.

By April, I could no longer walk far with my walker, and we bought a wheelchair.  I’ve had to use it ever since, except for the short walk to the bathroom (for which my walker suffices).  So 2013 so far has been spent on the sofa for me.  It’s boring; I’d rather be hiking.

And that's how it went when I wasn't here blogging!

2013, Part 1: Hello Again

It has now been more than 3 years since I was diagnosed with leptomeningeal carcinomatosis (LM). I know other LM patients and caretakers watch this blog, and I wish I'd been able to keep up with it this past year. I've only been able to focus on the most basics of living . . . getting to appointments and doing all we can to keep my body and my brain going. We've had to deal with A LOT of symptoms; I've not had remission.

I was further frustrated by changes made last May to blogger's software. It's getting harder for my brain to keep up or do multiple steps. It's not dissimilar to how we might feel after a couple of margaritas – I'd rather relax that try to do “work” tasks with my brain. I'm learning to be still.

I'm going to try to work around the problem(s) by handwriting my entries and getting help with getting them posted.

We'll see if that works. For now, know that I am still alive, still here, still going! hfh

Southwest Wanderings: Day Two

Wow!!! (Our Aching Jaws)

Saturday, March 31

~230 mi from Glenwood Springs through McClure Pass
and along Crystal River to Ouray and Durango

I'll finish this up when I can!

My morning view from the motel.

Heading south.

Following the river.

es.

Sorry for Not Writing!

I was still going through the pictures of the second day of our road trip when it was time to leave again -- and this time for a longer period of time.  I did get time to work on the pictures and the post for that second day, which was right when blogger went and changed their software on me.

Fighting brain mets is hard enough; on top of recent deaths that have saddened me, that was just one step too far.  So instead of focusing on hiking or this blog, I have focused on getting healthy doing everything I can to supplement and complement the treatment we've been doing.  And it must've worked -- the latest imaging results show I have but one LM spot left to whack-a-mole out of my head, the relatively stable spot in the Internal Auditory Canal on the cerebral nerves!

So, two and 2/3 years after being diagnosed with LM/mets to the brain and spine, I AM STILL HERE and I STILL HAVE QUALITY OF LIFE.  Yes, my days are hard, spent trying to do anything I can to catch up on the backlogged workload while dealing with ridiculous side effects and "collateral damage."  But overall, these are the days I have been fighting for: family birthdays, graduations, golden anniversaries, and spending as much time as possible with my loved ones.

I will try to blog when I can, but honestly the new blogger is driving me crazy!  So always remember:  no news is probably good news!

Love and Peace.

Southwest Wanderings: Day One

Rocky Mountain High

Friday, March 30

~225 mi from Denver to Lookout Mountain, El Rancho,
Squaw Pass, Loveland Pass, and Glenwood Springs

We loaded up Big Blue for the slo0o0ow ride we intended to take home and checked out of our suite well before the noon checkout time. We are on our tenth year of dealing with cancer and treatments, so any time we can squeeze in a little va-cay time sounds good to us. And seeing how that first day riding to SLC had broken me so badly, we knew we needed to go in smaller spurts. So we were really looking forward to exploring different parts of Colorado and Arizona at a leisurely pace on our way home.

We had no idea what we were in for.

The most overused word of the whole trip: "WOW!" DH posted that our jaws were aching from hanging open at the scenery; that's not much exaggeration!

In true hikingforhope fashion, I plotted a meandering route to take us into the mountains. I know that walking around at elevations higher than 8k' is REALLY GOOD for me (and has knocked cancer out of my lungs without chemo), so I REALLY like to get high! Once again, I planned to hot-springs-hop our way along so that each night I could get a good soak for the day's aches of the long ride and our intermittent "hiking." And once again, I'll try to let the pictures do the telling for me!

[Note:  Blogger has gone and changed its editor, so I do not know if you can still get the larger picture by clicking on the blog picture.  If not, I will try to resize these to a larger size.]

Leaving Denver Tech Center.

Our first sight-seeing stop was to see Buffalo Bill's grave site atop Lookout Mountain.

The Denver megalopolis from Lookout Mountain.

A lovely lake on Lookout Mountain.

A 360-deg view from the hillside of Buffalo Bill's gravesite.

The gravesite of Buffalo Bill and his wife.

The grave of William F. Cody.

He requested his burial here .

We should all be so accomplished
and dedicated to a better society!

A 100-year-old bison in the gift shop.

View from Lookout Mountain.

Buffalo lookout view.

Our next stop was El Rancho Colorado in Evergreen, just a little off our main interstate. I was determined to enjoy some good game meats before leaving the state! We opted to share both an appetizer and our meals so that we could sample as widely as possible. We planned to take pictures, but we were so eager to taste that we didn't remember till AFTER we'd eaten half our appetizer, and forgot completely to take a picture of the entrees (Colorado Elk Medallions and Grilled Buffalo Flank Steak) until we were miles down the road...too bad, because ALL the food was incredibly delicious (LOVED the side dishes)! And we had plenty of leftovers to stow in our cooler for a later picnic.

Elk sausage and rattlesnake-and-rabbit sausage.
We saved this for later; it was just as good cold as hot!

After lunch, we left Evergreen pointed for Squaw Pass Road. Although we were aware Mt. Evans Road---the highest road in America---would be closed, we still wanted to get as high as we could; and the route over Squaw Pass looked interesting. Again, we were so NOT disappointed!

Squaw Pass Road scenery, east of Mt. Evans Road.

Amazing views outside our windows!

We got out and walked around at the junction with Mt. Evans Road. Too bad the road was closed; it was dry past where it was blocked. We look forward to checking this road out later this Spring. We admired Echo Lake before heading on down the hill back toward the rendezvous with the interstate.

Mt. Evans Road at the Squaw Pass Road junction.

Doesn't that look like a limber pine to you?
I should've walked over and checked!

Echo Lake.

Squaw Pass Road, west of Mt. Evans Road.

After rejoining the Interstate for a few short miles, we ventured off once again on Hwy 6 over Loveland Pass.  Again, WOW!  Just...WOW!

Almost to the exit for the Pass...

Climbing higher on the highway.

 Getting high, hikingforhope style!

 A look back from the Continental Divide.

 The other side.

 

Stairway to the top of the Continental Divide ridge.

Of course I climbed them!

And felt every bit of that altitude, too!

 The top of the ridge...I mean, THE divide!

 After spending plenty of time walking around, climbing the stairs, chatting with the other visitors, and admiring the intense view we climbed back into BB for the drive down the other side.  It's hard to get pics from a moving vehicle, and by now our windshield was quite dirty.  But I did snap a couple.

 Heading out of Loveland Pass toward Vail.

By the time we rejoined the Interstate approaching Vail, the sun had nearly set.  Perfect time to go soak in hot springs!  And you know I had some picked out!

 Near Vail, Colorado.

Nearing Glenwood Springs, Colorado.

Glenwood Hot Springs Resort...the perfect end to the day!

We soaked and swam (OK, DH did). The other halves of the rabbit-and-rattlesnake and elk sausage made the perfect snack after we soaked.  The last of the light was just leaving the park as we made our way to an inexpensive quality inn and settled in for the night with our leftover lunch entrees and side dishes.  They were a hit all over again!


And BOY, did I sleep good that night!  There's something about soaking in those waters...