Full Frontal

So, in case you hadn't noticed, HikingForHope is anonymous.

In the beginning, you could never see HfH's face. She was careful in her editing, and if you never noticed, go back and look. The biggest reason for this is private, but there was a particular point in time when it changed. The first time I noticed I jummped up and down. “Honey! I see your face!”

I shall leave it as an excercise for the reader to puzzel out when that happened.

But anyhow, since that cat is out of the bag, here is a wonderful photo of her that her dad is fond of. This is from four days on the trail above Red's Meadow in the Sierras with her Dear Brother and her DH. Horseshoe Lake in the background.

The Last Post

“It has now been More than 7 years since I've been fighting 4^th stage cancer. I have survived LM with no remission for more than 4 years. We have now done all we can to treat a tumor that has been eating up my spinal cord and has left me nearly quadriplegic. I haven't been able to walk for a year and a half now; hiking is out of the question. I am unable to move my own body, even a simple shift in weight. I require 24/7/365 care and attendance. I am nearly blind and mostly deaf now. The love by which I have been surrounded has kept me alive and joyful despite my circumstances.”

--DH here.

HikingForHope's crumbling body could no longer contain her indomitable and beautiful spirit on August 11^th, 2014, 20 days shy of her 53^rd birthday. She slipped gently from my arms to blaze trails that I will not likely be able to reach for some time. I'm in no hurry; she parented both her children to adulthood (by a month in the case of our youngest). Now it is my job to watch over them.

In these last weeks she spoke of wanting to dictate her last post for this blog, but since words were precious as it became harder for her to speak, and we simply never did. Two days after her graduation I found a tablet with the quoted text above written in her shaky handwriting (her handwriting, when her body still worked, was beautiful). It had to have been written within the last couple of months. I am sure she had more to say, but it certainly stands alone, so I am publishing it.

Her intellect was intact to her end in this world, and joyful she was. Never did she complain, or become bitter. Her path was not of her choosing, but she walked it all the way out, with love enough to share.

I have not yet decided what to do about this blog. I am sure that this is not THE last post, only HER last post. There is much that I would tell you about HikingForHope, and, as her condition degraded these last years, we adventured faster then she could blog, so there is a bit of a backlog of her work for me to curate. She barely touched on our adventures to and from Colorado in 2012, and there were a few after that. I do not have a Master's degree in English like her, and I could never hope to write as she did, but I was there, and she did leave me a great deal of pictures and notes. Also, I suspect I might have some observations about riding the Cancer Bus to the last stop that somebody out there may benefit from. I will do my best to resist the urge to turn this blog into a monument of adoration, though I will tell you here and now, that woman was like no other, and I will miss her all of my mortal days. I will endeavor to honor her intent serve those who find themselves on the Cancer Bus, and offer them both hope as well as actionable intel, since, as we discovered, there is just so much that was not on the brochure.

I will close with a fun bit.

It was HikingForHope's wish that she be cremated, and that her ashes be scattered far and wide, in the places she loved. DS and I will be retracing the path to the summit of Mount Whitney and scattering a bit of her mortal remains there. Oh, wait, strike that. I think that is illegal. Forget I said it. But here is a picture.

Summer 2013, Part 2

So June found me in the hospital, fighting unknown bacteria in my cerebrospinal fluid (CSR) at the same time I was septicemic from---not just one but---two different types of bacteria.

At the same time, I lost the left side of my body (neuromotor-wise) and found my vocal chords were becoming paralyzed. So in July, I was hospitalized for surgery to place a plastic piece in my throat to help me.

In August, we decided we had to take out my Omaya reservoir in order for the IV antibiotics I’d been on 24/7 since June to kill all the bacteria in my CSF. After waiting the requisite period of time, we went to do my interthecal treatment. The doctor pricked my reservoir with the needle and - all I heard was a sucking sound in my head. It was akin to being in a Sci Fi story. All that resulted was blood, not CSF.

So we went back to my neurosurgeon the next day. He tried to access my Omaya reservoir, and once again I heard a sound like someone was sucking my brains out. “It worked at the hospital.” Well, it clearly wasn’t working now! So it was back into surgery for the 4th consecutive month that summer.

This time, we got a better style of Omaya reservoir, one without any bend in the catheter tube. And finally, in Oct, we were able to resume treating me.

Although I’d missed out on the whole summer, we were blessed with beautiful warm weather, so I went to the beach - twice- in October. I even swam in the pool to see if I could keep my head above water. I did.

hfh

Typed by GSC

Spring and Summer 2013, Part 1

I continued to experience a decline in my overall health, and an increase in paralysis on my left side.  By late May /early June, I had terrible head pain, ran a temperature, and slept most of the time.  I could no longer walk but a few assisted steps; we bought a potty chair to prevent bathroom falls.  I can’t see through my left eye, and lost even more facial muscles on the left side.  On the scale used for assistance, I could no longer shop, bathe myself, or prepare food to eat.  I am very dependent on my caretakers.

So by May’s end/June’s start, it was obvious I was dying and the family flew to see me. 

My primary oncologist was scrambling to deal with a variety of symptoms, especially my declining ability to breathe or swallow.  We turned to specialists for help; the ENT specialist used a camera on a tube to diagnose me with paralyzed vocal chords.  No wonder I could barely talk!  He also said it was causing the choking/aspiration/inability to breathe.  It needed to be addressed ASAP.

In the second week of June, we were headed home from an intrathecal treatment through my Omayya reservoir when my caretakers got an urgent text from my primary oncologist to pack my bag and head back to the hospital – I’d just been diagnosed with bacterial meningitis from an unknown bacterium, as well as sepsis from—not one, but—two unknown bacteria living IN my red blood cells.  No wonder I’d been ill!  And thus began a week of hospitalization followed by 15 weeks of in-home nursing care, all spent hooked to IV antibiotics 24/7.  Well, there went my Jacuzzi therapy and summer swimming!

While hospitalized, I was again subjected to the camera-down-the-throat and and diagnosed again with paralyzed vocal chords—only this time, I was told I could have NOTHING by mouth, neither food nor liquid, because of the aspiration. I immediately rejected that and continued to eat as I could (soup, liquids w/ thickener added).  After I got out of the hospital, I went to an amazing doctor (Dr. Andrews) at a world-class facility.  He did surgery on me in early July (while I was awake) and ameliorated the problems the paralysis was creating w/my vocal chords.  I still can’t eat regular food, but at least I’m not aspirating so much now and the choking/not breathing episodes have dramatically decreased.

 I’ll write more later; much gratitude to my caretaker G for typing it up for me so I can post and update y’all.

hfh

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...