Soaking My Head, Part Deux

Four States in One Day!

DAY ONE: SO CAL TO SALT LAKE CITY

I hadn't even finished posting about our little weekend road trip to the central coast when DH was packing us up again for another road trip---a much longer one this time. For the third month in a row, DH has had to travel to Colorado. So instead of flying this time, we loaded me into Big Blue so I could tag along.

I have a very nice super-deluxe pillow chair that goes in wheelchairs, et cetera, to help prevent pressure sores, and Big Blue is a deluxe ride itself. So I was game to try this little adventure. And since I'm still going through the 6 wk of continued cellular ablation from the Cyberknife treatment, soaking my head (really my whole body) at hot springs along the way sounds good to me!

We set off at 0730 and drove pretty steadily, making our first "rest stop" in St. George, Utah. (Mickey D's has made road tripping easier for me now, thanks to the addition of their fruit smoothies and yogurt/granola parfaits.) Once again, I'll let the pictures do most of the tellin' for me...



A whole lot of empty Nevada miles...

Zoom of a Northern Nevada peak.

Oops...I missed the Nevada-Arizona border
Welcome sign. Will this do?

Starting into Virgin River Gorge in Northern Arizona.

Driving Virgin River Gorge in Northern Arizona.

The Virgin River.

After our stop in St. George, we set about navigating to our first hot springs stop, one on private property on a huge ranch. The owners graciously allow people to use the hot springs, and I greatly appreciate their generosity and faith that most of us know how to respect a natural wonder.

Heading further north in Utah.

A natural hot springs pool bubbles up from an
underground tube in the middle of ranch cow pasture.

The water is a beautiful Hawaiian blue.

That dark hole down there is a tube that links to other hot springs ponds.

It's a DEEP pool!

We enjoyed soaking, swimming, stretching, and seeing who could touch the bottom with the people already there (Nebraska and Washington college students and a mother and daughter from Provo). The water was approximately 100 deg; not really hyperthermic but definitely enough to ease the ache of the miles (but I was soaking and dunking my head plenty anyway).

After an hour or so, nearly everyone was gone and we were hyperthermic enough to enjoy the brisk walk back in the wind without freezing. We climbed into the truck and made it back to the Interstate just around sundown. With the hour forward we jumped/lost, we still made it to our friends' home in SLC by 2200.

I SLEPT so well that night!

Soaking My Head

Hippocrates Was A Very Smart Guy

Those of you who have my hikingforhope calling cards know that I have a couple of sayings that I rotate on them, including one from Grandma Whitney (from back in 2008 when I was getting ready to climb Mt. Whitney). Lately, I've added one from Hippocrates that expresses my hikingforhope sentiment: "Walking is man's best medicine."

Hippocrates also wrote about the healing aspect of water, and especially believed in balneotherapy. As I've always been open-minded on this journey (as long as what's being proposed "does no harm"), one of the things I've done is seek out natural mineral hot springs in which to soak my body.

I also have read that hyperthermia helps the radiation do its job. So having just done Cyberknife and having at least 6 wk ahead of me during which the radiation will continue ablating cancerous cells, I was eager to SOAK my sore, aching, tired body in some GOOD mineral hot springs. If I was lacking any minerals that were causing the body aches, my skin is my largest "organ" and the fastest way to soak up what I need.

I know of many springs, but my wanderlust has me yearning to see new sights and sites...plus I owe a trip to my German hiking buddy, as she kindly took me and dropped me in the desert hot springs not too long ago. So I found a springs I've always wanted to check out on the coast -- 104 deg. Perfect for soaking my head!

We threw our gear into Big Blue II late Friday, went and kidnapped my hiking buddy (with her permission so we wouldn't break any federal laws), and headed off for a weekend of soaking bliss. Since it's still so hard for me to write, I'll let the pictures tell most of the story...

The campsite was just wide enough for our tent.

Olympic-sized pool in which my cohorts indulged themselves.

I also skipped the water slides.

104 deg of sulphur-smelling, stress-reducing, muscle-noodling bliss!

After soaking until the sun exposure combined with my chemos became a problem, we headed back to our camp to build a fire and roast some bratwursts. I took my lunch down to the open field (the nonhookup RV slots were empty) and ate in the warmth of the sun, then wandered around looking at the wildflowers beginning to pop out. Just walking is tough exercise for me as I have been experiencing bad muscle spasms and weakness in both legs in addition to instability.

A beautiful day to just sit and enjoy while eating my lunch.

Wildflowers are starting to pop. We saw many coastal hills
starting to show bright orange poppies from top to bottom.

DH and my hiking buddy dealt with our fire and lunch makings while I changed into warmer clothes for a trip up the coast to enjoy the scenery and show my hiking buddy the elephant seals. It's past the seal pupping season, but there's always a few still hanging around this time of year.

Listen to that wind! That's why I wore the warm clothes!

No problem telling which are the males!
Check out his elephant-like proboscis (schnozz).

You can tell which one is the pup from this season; it's still wrinkly from a lack of blubber.

Oh, so that's why they're called flippers!


We went as far north as the old lighthouse (still in service as a military facility) north of Hearst Castle before turning around and making our way back to the hot springs RV resort. We stopped along the way both going and returning.

Piedras Blancas Lighthouse, since 1875.

We walked around and enjoyed the quaintness of Cambria.

Morro Bay.

The ride back to camp.

By the time we made it back to camp, the sun was behind the hills. DH volunteered to get the dinner fire started whilst we went off to have a lovely evening soak in the hot springs. With the sun now off the pool, I didn't have to worry about the rash from the photosensitive chemotherapy getting any worse.

We enjoyed an excellent dinner of applewood bacon-wrapped steak, corn on the cob, and garlic potatoes all done over the fire. Total cost? $10! Do we know how to live well low-dough, or what?

We turned in early that night; with an 11 a.m. checkout, we would have to start packing as soon as we got up.

The next morning was gloomy and gray, perfect weather for visiting the coast in winter. We packed up and headed down to Pismo beach, to show our hiking buddy the monarch butterflies that migrate there each winter. (I'd wanted to go last October, but couldn't due to brain mets/treatment.) Sadly, we were too late to see them this season, but we made a pact to come back again this fall or winter.

Before we turned Big Blue toward home, there was one last thing to do. I came to stick my toes in the ocean for my sister's birthday. So that's just what DH and I did.

The ride home was so relaxing, our bodies limp from the healing soaking as we sang along with the tunes. We even saw a deer, though we didn't get a photograph. And even with the time change (Spring forward!), we were still home by 4:30 p.m. It was an excellent weekend, and an excellent first road trip for me since Seattle.


P. S. Want to learn more what this life is like for us pioneers? I think Suzanne D. captured very well both what it's like to be behind on everything (I'm now 9 years behind here at home!) and what it's like to deal with the brain mets. (I often tease my doctors that the brain mets symptoms have gone "from a two- to a four-margarita level"!)

Wreckin' the Curve: FIVE YEARS

"Today is the Day"

Mel Fisher, the famous treasure hunter, used to greet each day with the phrase, "Today's the day"; and that is exactly how I feel! You see, yesterday was THE DAY when I FINALLY got treatment for the 11 x 8 x 11 mm tumor that had planted itself on my cerebellum. We ZAPPED it so good with Cyberknife that it only took ONE 30-min session. The waiting to get there took 6 wk -- and remember, brain mets has a prognosis of 4-6 wk without treatment. It gets to be a real white-knuckler story around here sometimes!

Cyberknife reminds me of the Pixar lamp.
I love it; it makes it possible for me to forgo brain surgery!

This is what the doctor and the physicist are doing
while I'm lying on the table behind thick doors.

I get to lie on the table and look at the pretty sky ceiling above me...
sure beats brain surgery!

And boy, I could tell those invisible beams were stirring up a hornet's nest in there -- the entire time I was under the mask pinned to the table, my IAC was hurtin'! It eased up afterwards, though.

They had some good news for me, too: the specialized MRI done 3 wk after the brain MRI that revealed the new spot shows that it has not increased in size; and the spot on my spinal cord that we zapped last November is continuing to decrease even more. So we continue this "whack-a-mole" approach, but it's working.

I was SO HAPPY to have gotten treatment that we went to our favorite restaurant, Asian Garden in Duarte, for a celebratory meal. Then we headed to Glendora to Herbalenium to pick up more concentrated brown seaweed to get me through the next 6-8 wk before more imaging. I also did an ionic foot bath while I was there; it was the worst the water has ever been. (That stuff still boggles my mind; even if you attribute the colors to mineral changes, where the HECK does all the particulate matter come from? The foot bath looked like a very stagnant pond when my session was done.)

Since it was not much after noon and we still had hours of daylight, I convinced my chauffeur to drive up to the top of Mt. San Antonio (Baldy to we OC'ans) so we could "get high" hikingforhope style!

Mt. San Antonio.

End of the road.

Of course, I got out and walked at the end of the road...I can't wait to start feeling better and reclaiming my life! But it's still too early to push; I've got 6 wk of recovery ahead of me. So I picked out a tree up-slope on a tractor trail and walked to it before turning around. That was enough!

Tractor trail heading UP.

This tree and no further!

You can hardly tell the grade in this pic! Sheesh!

Cool Upland ruins we saw on the way home.
Anyone know about the history?

I have been stuck on the sofa, waiting for treatment and afraid to push my body too hard until I get treated, but guess what? TODAY IS THE DAY that the rebuilding begins!

And not only that, TODAY IS THE DAY that I had only a 5% prognosis of ever seeing...five years ago today, my doctor delivered the news that the cancer was back and spread throughout my body. I wasn't expected to make 6 months back then, let alone 5 years. And for those of you keeping count, this is THE FOURTH TIME I have fought metastasis to the brain!

The MRIs still show the LM on the Vth cerebral nerve, but it remains stable and untreatable with Cyberknife in its current diffuse state. Meanwhile, each day that I live is a day closer to the cure, like this recent news:

http://www.roswellpark.org/media/news/roswell-park-launches-landmark-immunotherapy-vaccine-trial

I hope, like me, you will greet each day with the certainty that one of these days will be THE day...the day my hearing is restored, the day my face is restored, the day when the cure is known to us, the day when we know we never ever have to fight cancer again.

TOUGH TOUGH TOUGH

"Tough as Nails"

–Gabby Gifford

I celebrated an important anniversary January 12th -- 2 yrs after we know cancer metastasized to my cerebral nerve(s) and silenced my left ear, I am still alive and enjoying a relatively decent quality of life (albeit different -- a "new normal"). I wanted to post then, but I was dealing with insurance issues and trying to get imaging appointments scheduled. We'd already had to wait 6 wk after I completed Cyberknife treatment (Thanksgiving), delaying when I would normally be doing the imaging.

The imaging was further delayed by scheduling issues that led to me CHANGING where I get my imaging done (after 9 years). When you're dealing with a 4-6 wk prognosis without treatment and a 6-mo prognosis with treatment, it's important that you get an appointment sooner than 4 weeks away to see if treatment worked!

Well, the imaging showed that the Cyberknife treatment worked on the lesion on my spinal cord at the C1 level. And, imaging showed that the place we are watching on my cerebral nerves is stable. HALLELUJAH! What an excellent report!

But the stress I experienced this fall and winter was not without its toll; the doctor called me right away to alert me that another lesion has appeared in my cerebellum. WHAT? Hey, you! You have no authority to be there; get out!

Apparently a new spot has arisen between Oct and Jan that is already 11x8x11 mm. I could hear the doctor's frown in his voice. So I made the flurry of rounds to the oncos and the neurosurgeon and the neuroradiologist...I did tell you this is a full-time job, right? Well, the COST of the gas and the mileage to these appointments is also quite burdensome!!! I'd already gone through the Sep 1-Aug 31 allotment from American Cancer Society by last December!

The bottom line from the rounds is that we are going to try Cyberknife on this new lesion. We cannot tell from the first round of MRIs if the lesion has penetrated DOWN into the layers of the brain or has instead stayed there at the surface. If it's stayed in the meningeal layer, we still have ammunition we can use in this fight (intrathecal drugs, chemos that cross the BBB, and that amazing Cyberknife).

I spent this week getting the specialized CT and MRI done and having the mask made that will hold me to the table. The neurosurgeon will be doing the mapping, and I plan to be on the table getting treatment before March has done more than arrive.

Thank you for all the support; I had no idea how many people are rooting for defeat of this disease!

Still Going

Still Here

Yes, I am still here! And, I had no idea my audience had extended as far as it has; thank you! You know that poem about the footprints in the sand? When I look back at 2011, I don't just see one set of footprints -- I see thousands, from all of you helping to lift me up! Your love is amazing.

When I first set out to write this blog, I wanted to focus primarily on hiking and the mountains. But for two years now (keep in mind the prognosis is 4-6 wk without treatment and 6 mo with treatment; I just passed the 2-yr mark since mets made it to my brain), it's just been about fighting metastasis to the brain a la whack-a-mole.

It has been, in a word, grueling. Repeatedly fighting metastasis to the brain has been the hardest thing for me to endure. Here's a brief recap of what's been going on: in November, I traveled for a couple of weeks to undergo Cyberknife to a cancerous lesion on my spinal cord at the base of the brain/C1 level. The daily travel and treatment ended just before Thanksgiving, so you can imagine what our life is like as a family (TOUGH!). I then focused on making it a good Christmas for our family; and although I was puny, I enjoyed all the company and love. I especially was excited to meet our Great-Neice for the very first time!

I feel 2012 is going to be a good year, perhaps one in which I will enjoy blissful stability/remission -- but it hasn't started off that way! My mother thinks something BIG must be coming, 'cause I sure am getting stymied at almost every turn. From ridiculous insurance issues to breaking imaging machinery to RUDE RUDE RUDE public encounters, I have had just about everything rear its ugly head trying to make me want to JUST GIVE UP.

Well, I am NOT going to give up. I am not even going to get CLOSE to giving up! I am going to fight and fight and fight until cancer understands IT IS DONE, ONCE and FOR ALL!
=======================================
Well, that's as far as I got before the laptop battery died and the endless rounds of appointments took over my life again. Picking up my train of thought is getting harder to do these days, so I'll just go ahead and get this much posted. Instead of trail reports, I'll just have to settle for little posts about trailblazing through mets to the brain and leptomeningeal carcinoma.

Losing It

Yes, I know I'm horribly behind... I'll try to update you on what's happened since the roadtrip to Seattle.

I came home near the end of August and stayed off the forbidden i.t. treatment for 30 days, then went and got another brain MRI. And found out near the end of September that I didn't pass it.

OUCH!

The imaging showed leptomeningeal metastasis on the Vth and VIIth cerebral nerve running from the Internal Auditory Canal to Meckel's cave in the soft tissue of the brain; and a 6-mm by 3-mm cancerous lesion on the right side of my spinal cord at the base of the brain/top of the spine (C1 level). And unfortunately, the leptomeningeal mets is once again in the form of zuckerguss.

OK, so now I've been diagnosed with metastasis to the brain and LM for the THIRD time. Take a deep breath and go ahead and assume it's still just as impossible to survive as it was the first two times I survived. FORGE ON.

So the time-consuming rounds of doctor appointments and consultations began again. (You simply cannot believe what a full-time job it is for those of us who fight cancer from this side.) And meanwhile, the responsibilities I normally address are left undone...which really gets to be a problem when it's something like filing taxes with the IRS before the October deadline!

DH was obviously getting more and more overwhelmed by the load; in addition to the normal 14-hr day spent at work, DH has to take care of EVERYTHING else these days. The latest diagnosis (and the accompanying decline in my capabilities) was simply too much; I could tell the stress was getting to all of us in the family. We desperately needed a break, any we could get.

So we contacted a reliable accountant with impeccable integrity in Dana Point (Chris W. Johnston, CPA) at the very last durn minute and begged him to please take us on as clients. (He did and even gave up his Saturday; thank you very much, sir!) And then we did the only sane thing we could do -- we ran away from home.

Yep, we just threw some sleeping bags and clothes into Big Blue and took off with $15 cash between the two of us late in the afternoon one Friday. I, of course, could not stand the fact that we have not made it to the Sierras this year, so I navigated us north. And we spent four glorious nights and days just LIVING. So stay tuned as I try to wade through my pictures and write up what I can whilst going through treatment for brain mets again...

Road Tested

Road Trippin' to Seattle

August 16–20, 2011
2424 mi roundtrip

When we got the word in August that I'd been accepted (preliminarily) into the clinical trial and to head to Seattle, we were all so excited! But I did NOT feel up to a big trip; there was just no way could I deal with the hustle and stress of air travel these days. Luckily for me, there was no shortage of loved ones offering to drive me there.

I do truly love traveling by car with a good conversational companion; it is my FAVORITE way to travel because it's like sitting in your living room talking to someone you love only with beautiful changing scenery. So with a couple of gas cards donated by the American Cancer Society, we finally finally finally got to head to Seattle to meet our new/old friends there, both personal (K&B graciously put us up for our stay) and at the Tumor Vaccine Group.

We chattered and blasted the stereo and sang along with CDs and oldies stations for two days of driving North. Do you think the driver pulled over to let me snap pictures? Not at all, so you'll have to put up with shots out the windows and whatever perspective I randomly got!

By now, you already know the rest of the story -- I did NOT get accepted into the trial when we showed up there and had to go back home and stop intrathecal treatment thirty days before getting another brain MRI. But you know, we weren't sorry a bit -- we are so happy to have met the faces to go with the names and voices; and we just loved the beautiful road trip!

The first day we drove from SoCal to the Oregon border.
Dinner stop was in Weed--the food at the Cafe was fabulous!

We took a back highway to Eugene; the lakes and forests were amazing.

Our second day of driving was from the CA/OR border to Seattle. Here we cross into WA!

The volcanoes go by much more slowly than when flying. Here's Mt. St. Helen's.

Port (North Tacoma/South Seattle).

K&B's home is like living in a garden. It reminded me so much of the 'aina; very lush!

The next day we headed to the UW (You-Dub) campus where the TVG clinic is located. The weather was beautiful both the day we arrived and the day of my appointment!

Almost at the campus. I love the little bridge towers.

Since I didn't qualify officially for the trial, we left the next morning.
Seattle was gloomier than we were!

Crossing from WA into OR.

Portland.

Mt. Hood.

Mt. Shasta truly LOOMS in the distance...

Shasta Lakes.

Mt. Shasta still draws me in the most...

The California Aqueduct cutting through our Golden State.

The American River.

I love the Central Valley -- some of the best food is grown here!



Bakersfield. Of course.

Those windmills let us know we are almost home!