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!

Catching Up

A Hard Year So Far

Well, I am so far behind on everything that I can't seem to catch up on anything—but I'm happy for each day that I'm able to do SOMETHING! And I have been trying to get caught up on pictures and posts here, but it's just like everything else in my mundane life right now: neglected!

This blog is really about just two things: fighting cancer and hiking. For too long now, the posts have been focused on the cancer fight. But I have not forgotten the hiking; I just haven't been able to do much of any! But I am happy to report that the ANF reopened in time for Memorial Weekend after the Station Fire, and even more of it reopened in time for the 4th of July.

Of course, I've been chomping at the bit to get out there. So we took a drive the weekend after July 4th to see the status of Hwy 2; reports had it still closed between Vincent Gap and Islip Saddle, which means I can't access the trailheads at Dawson Saddle. I am happy to report we experienced no road closures, and drove all the way from Mountain High to Islip Saddle!

So perhaps when I get stronger, I can take on some of the steeper trails and build my strength up quickly. I am still far too puny and suffering from too many aftereffects of the radiation to be out in the wilderness, though; so I am biding my time.

In the meanwhile, enjoy some pictures of our lovely July drive into the mountains. After checking out the 2, we headed out East Blue Ridge and up to nearly 8000 ft. It's nice to be able to get that high without hiking!

As usual, click on any picture to see the larger version.

Looking into the Southfork basin from Hwy 2.
The Devil's Punchbowl is middle center.

A zoom of the Punchbowl shows some of its "punchbowl" looks.

Wildflowers dot the mountainside at Islip Saddle parking area.

Wildflowers were in strong evidence out East Blue Ridge, too.

We even saw a deer!

I'm informed this is a sad sight in summer.

California dodder dotted the ski slope.

We picnicked in Big Blue while enjoying all the lovely wildflowers, higher altitudes, and cooler temps.

Nothing Worthwhile Ever Comes Easily

This is Not A Joke

I must thank all of you who were so kind to donate...those donations went straight into our gas tank and made it possible for us to head for the Tumor Vaccine Group in Seattle on very short notice. We had an awesome two-day road trip from So Cal to SEA, enjoying all the magnificent beauty---and so excited to finally be taking this step that my BP has jumped 20 points and is no longer in the basement. As hard as traveling is for me, I was determined to rise to the challenge just as surely as I refused to quit on Whitney despite the fatigue.

We arrived Wednesday evening and met with our hosts, K&B, to whom we are SO GRATEFUL. Their generous offer to let us stay with them in their beautiful home kept worry and stress off of us as we scrambled to get out the door and get to SEA for the vaccine clinical trial.

My first appointment to do background/history and get the first injection of vaccine was scheduled for today. We arrived with plenty of time to spare for our 9 a.m. appointment, so it was a leisurely stroll to the research center. They had a room ready for me as soon as I arrived, so we got settled in.

First step was to go through the informed consent again and sign all the paperwork again. After that, we did my list of medications and my history. Then we settled down in my room to wait for the next step: blood work, urinalysis, a tetanus shot, and getting the vaccine injection.

Unfortunately, my history is as far as we got! There was a bit of a discrepant issue regarding Mr. Puffy. You see, it turns out I’m allowed to be on the drug I’m currently taking (according to trial protocol established by the government), but I’m *NOT* allowed to be injecting Mr. Puffy with it before doing the brain MRI or else it constitutes treatment for active brain metastasis rather than a stable condition!

Believe me, nobody was happy to discover this or tell me this. I’m just such an unusual case with what we’ve done with Mr. Puffy that the issue slipped through the cracks until they were doing my history and the doctor realized the MRI I’d had was done AFTER a Mr. Puffy injection, which protocol does not allow.

But we came up with a plan whereby I will just refrain from getting anymore injections in Mr. Puffy, perhaps increase my oral medication, and then get another brain MRI done 30 days after the last Mr. Puffy treatment and GET QUALIFIED again, this time “for real”!

So we are of course disappointed, but we are not disheartened at all, as it’s just a matter of taking another 30+ days to jump through all the hoops again. So I should be able to get the MRI in September and get qualified around the beginning of October.

And this has still been such a worthwhile trip that we are not upset at all about having driven all the way here. I got to get off the sofa and road trip with one of my most favorite persons, visit people and make new friends, and see the incredible beauty of the Northwest. I am stronger for having done this trip; and I am still determined to get to the cure, whichever road takes me there. The doctors and nurses at the TVG have now met me in person, and we are all working very hard to get me into this clinical trial just as soon as possible.

With my rollercoaster of a life, you didn’t think it was going to be too easy, didja??? So, stay tuned!!!

♪♫♪The Bluest Skies You've Ever Seen

...Are in SEATTLE! ♪♫♪

Yes, I know that I need to catch the blog up on what's been going on with me. But in the meanwhile, here's the absolute LATEST BREAKING NEWS...

As of last Friday, I was officially admitted into a clinical trial that I believe is going to lead to the CURE for the cancer(s) I fight!!!

I will be getting more details on Monday about my treatment schedule, and leaving on Tuesday, so life is kinda crazy right now. I will try to write while I'm lounging around Seattle!

Remember,

NEVER GIVE UP!!!