Hiking for Hope

Still Going

2012-02-01T13:33:00.000-08:00

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

2011-11-15T19:35:00.000-08:00

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

2011-09-14T02:57:00.001-07:00

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

2011-08-30T20:59:00.001-07:00

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

2011-08-18T17:35:00.000-07:00

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

2011-08-14T20:21:00.000-07:00

...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!!!

Where the Spots Show

2011-06-17T00:17:00.000-07:00

What the Imaging Shows After Rads

Okay, here is the final roundup of imaging results after bone scanning, MRIs, and CTs:

BRAIN/INTERNAL AUDITORY CANAL

Improved leptomeningeal disease along the

L cisternal 5th cranial nerve (affects facial nerves)
bilateral inferior cerebellar hemispheres (base of the brain)

NO NEW DISEASE

SPINAL NERVES

Decrease in lesion L upper cervical cord at level of the dens
NO NEW OR ENLARGING LESIONS

LIVER

Stable enhancing masses (probably hemangiomas)

LUNGS

Stable micronodules scattered in both lungs

BONES

Worsening L hip lesion (qualifies me for clinical trial in SEA)
Stable/possible reduction in lesions in:

~8th rib R lateral
lower thoracic spine
upper lumbar spine

Stable small area of low-level activity in L upper sacrum/S1.
Stable sclerotic bone lesions

The doctors believe the overall picture is good; it looks very much like I have survived metastasis to the meninges for the SECOND time. We are concerned that I am still suffering from side effects from the radiation, possibly including malabsorption of the nutrition I put into my body religiously every single day, as I am struggling to regain weight. But they have several plans to deal with that if I can't get it turned around very soon!

I am still suffering from a nearly constant vertigo that makes functioning very difficult, and exacerbates the nausea/vomiting issues. I also get a terrible, creepy feeling on the most-treated part of my head/brain that can probably best be described as feeling like I have shingles on the brain under the skull---YUCK!

Mr. Puffy injections clearly affect whatever is happening in my brain for the better, and usually I feel best in the days right afterward. By the time I'm due again, I've usually been stuck on the sofa for several days, feeling my head spin in circles. I am always so grateful for that life-saving treatment, and the loving care with which it is given!

Some New Stats

2011-06-07T23:00:00.001-07:00

Ooh My Head

Fighting/living through cancer metastasis in the brain (meningeal and parenchymal tissues) has been the hardest thing I've ever done. Well, duh; that's because it's supposed to be impossible!

Hard as it has been includes not understanding consciousness/this world. Easy as it has been is comfortable like alcohol is affecting my brain...kind of pleasantly not quite right but I can "maintain." Best it has been is to sleep in the veil between this life here on Earth and our real lives on The Other Side where LOVE rules.

Recovering after the WBR and whole-spine radiation has not been a straight trend up; it has not been a straight trend down. It has been much longer and harder than I ever imagined. So I would like to remind myself, my family, and this audience of a few of MY statistics in this fight against cancer to hopefully add a little hope to our lives:

Diagnosed more than 8 yr ago Stage II cancer; very aggressive form; metastasis to sentinel lymph node; prognosis at the time was 50-50 that I'd be alive in 5 yr. Had "the mother of all atomic bombs" of chemotherapy for over 6 months. Almost died (NDE) of a staph infection at the same time I had no white blood cells and no neutrophils from chemotherapy.

Diagnosed more than 4 yr ago Stage IV cancer metastasized to liver, lung, lymphatic system, pelvis, spine, ribs, sternum, shoulders, and facial bones. One rib is completely eaten through/broken. Normally, this much involvement has a prognosis of weeks to months (~6) left to live. FOUGHT IT BACK, even though I never made it into complete remission. Doctor told me the important thing was to get it OUT of the liver! I was in the Sequoias in May when I could FINALLY breathe again. The O3 in the mountains (or by the ocean or after a rainstorm) is good for the lungs!

Diagnosed in 2008 with metastasis again to lung. Climbed 8-14k mountains (hypoxia apparently is good exercise for the lungs) and got rid of the spot in the lungs WITHOUT resorting to toxic chemotherapies. And the imaging shows I have a broken back that I'm backpacking with, in addition to a broken rib. I barely notice it; I just have a sore back like any body my age could expect to have.

Diagnosed in 2009 with cardiac tampanade with cardiac arrest imminent (meaning fluid was surrounding my heart, crushing it and keeping it from beating properly). Doctors did surgery and saved my life. I also had to survive pleurisy as I recovered, which was extraordinarily painful. I also was diagnosed with metastasis again to the liver, but I was too ill from the cardiac problems to go on chemotherapy. We stayed focused on what we'd been doing and three months later, the spot in the liver was gone without any toxic chemos. I spent most of the year rebuilding. My cardiologist was stunned and amazed when he saw the backpack we did that September.

Diagnosed in 2010 with metastasis to the brain, spinal nerve roots, and cerebrospinal fluid. Prognosis without treatment was 4-6 weeks, which I had already outlived by the time I was diagnosed (from first symptoms to diagnosis took 4 MONTHS). Prognosis with treatment is 6 months. I didn't even have the brain surgery for the Ommaya reservoir until I'd survived 6 mo after diagnosis. It's been over a year since I was diagnosed.

Diagnosed again this January with metastasis to the brain, this time to the parenchymal tissue as well as the meningeal tissue. So we're back to a prognosis of weeks again. What we're already doing won't treat it. I undergo 6 wk of whole-brain radiation and whole-spine radiation. It's now been 5 months since I was diagnosed, and so far it looks like we have achieved our goal of again beating it back.

I'M STILL HERE! And even though I'm all the way back to square one on rebuilding myself as a human being, I still love my life here on this beautiful Earth with which we were blessed. It is still worth it to me. If you know how hard it is to fight cancer, you know I'm saying a lot.

If there's one thing I've learned by surviving this long with a fourth-stage cancer diagnosis, it's that one thing that arose out of our American history with "The Big C" is an "all or nothing" mindset that just isn't QUITE true. I have never ever ever once made it into remission except a brief window between 2004 and 2006. We're pretty sure it was already back in July 2006; we didn't catch it till March 2007.

So I've learned that I can LIVE, and have a good life and a good time, with cancer cells unauthorized to be in my body. Cancer cells do NOT have the power to kill me, or you, or anyone else. Cancer cells can only overwhelm your vital organs, and it is our job (drafted though we were) as cancer warriors to PREVENT those cells from doing that.

I never fret anymore that I don't get complete remission, no evidence of disease imaging reports. I stay happy with the basic rules that have led to my successfully LIVING with fourth-stage cancer: Keep it out of the liver and brain tissues above all else. You can live with a spot of cancer in your bones. You can survive more than you can ever imagine possible. Building up your own body, your healthy cells, through nutrition and exercise is imperative. Giving your body what it NEEDS to keep cancer cells in check so that they cannot overwhelm an organ is more important than chasing after an elusive "NED" scan you don't really NEED.

It's not all or nothing on cancer cells; it's whether you're alive and able to have a decent life. You can live with a few cancer cells. You can build your body up to where it's just a chronic nuisance. The better you care for your body and treat it the way it was DESIGNED, the easier time you will have with EVERYTHING: the cancer, the chemos, the weakness, the tedious rebuilding after the body has been wasted to a cellular level.

NOBODY EVER DESERVE(D/S) CANCER, but I want us all to remember that you can help your body to LIVE with it and you can still have a good QUALITY life. So above all else, be happy and see your glass as half-full ALWAYS.

Seattle Bound?

2011-05-31T19:06:00.000-07:00

I've barely been able to function in my human skin the past few weeks. I was going along fairly okay, recovering and rebuilding from rads, when I somehow plummeted off a cliff. The pressure in my ear, the nausea, the weakness...but worst of all, the weirdness I feel in my head. We've tried different things, but so far I have not regained my quality of life yet. I am stuck on the couch due to a kind of extreme vertigo and nausea and weakness.

It's been like a really bad drug trip lately. I can't stand the way my brain/head feels. I made the rounds of doctors and imaging, and our best guess is I'm just still feeling some very strong and obnoxious neuralgia from the WBR.

Because, so far, all the imaging tests are coming back that the rads has controlled the spots in the spine and brain...and yet, the spot in the left hip bone has worsened (needed criterion). Which puts me on track for the clinical trial in SEA!

So I'm just riding each day, doing what I know I have to do---nourishing my body as quickly and effectively as I can. Getting my strength and my body built up. Get ready to ride in the car for 2 days to SEA.

I'm not really functioning well enough to focus on anything other than staying as conscious as I can and getting food in me, so I'm not really available these days on the internet. But I AM still here!

Where Are We?

2011-05-07T18:29:00.000-07:00

Round and Round

I've continued to worsen in the ear pressure, pain, and puking departments; so I made the rounds of all the doctors.

First I saw my oncologists who take care of Mr. Puffy and the portacath infusions. Like me, the increasing ear pressure concerns them that it's coming from the Internal Auditory Canal (IAC). To me, it feels as painful as a middle ear infection threatening to burst my eardrum. I mean, IT HURTS! So these doctors are glad I am consulting with other doctors and investigating Cyberknife, because what they do won't affect that IAC.

Meanwhile, we're continuing with what we've been doing (although we did boost the intrathecal dose another 5 mg). We all agree I am still too puny to add any of the very toxic chemotherapy back yet, so I remain on mostly monoclonal antibody drugs that should cross the blood-brain barrier.

Checking Which Way the Wind Blows

2011-04-22T17:38:00.000-07:00

One Step Forward, Two Steps Back?

Hmm...well, I'm definitely doing better from the effects of the radiation. I'm still focused each and every day on getting nutrition, fluids, and supplements in me to help me rebuild from the radiation damage to the body. My vitals are steadily improving, as is my blood work. Happily, I've even been able to putter pretty consistently a little each day since last Sunday (I missed only Wednesday). My body followed its normal pattern of behavior after receiving the last Mr. Puffy injection and portacath infusion. So things seem to be going well enough.

Good morning! From l to r: Zip Fizz, Nano Green Tea, Poptosin,
glutamine, creatinine, wheat grass, vitamins and minerals.

Vitamins B-6, B-12, C, D-3, and E; Alaskan salmon oil;
coral calcium; prolamine iodine; and selenium.

Clipping my homegrown wheat grass for my fresh-pressed morning shot.

But there's another tool I use; a sheet I call the "Health Diary." I simply write down any changes or things I notice each day, and keep track of how I feel each day of the drug cycle. And in reviewing it in its totality from the past two weeks, it's pretty obvious that something is NOT RIGHT. I'm getting worse in some areas, not better.

Looking at the physical effects I'm noting, particularly those ones of "that incredible pressure" that has been building in my ear and where I wake up out of a sound sleep each morning vomiting and with a headache, I'm suspicious that I have an issue in the Internal Auditory Canal again/still. So I'm getting an appointment both with House Ear Clinic again (might as well rule out infections et cetera) and Cyberknife. I remember both doctors at both places stating that Cyberknife could be used as "salvage operations" if general field radiation was not able to treat some of the areas of the brain and spine where lesions might be located.

I did manage to achieve another milestone this week: I was finally able to do a couple loads of my laundry! It might not seem like much to you, but it's one of the things on the scale of what you have to do to be independent...and that's pretty darn important to me.

Even though I still feel pretty yucky, I manage to pull myself up off the sofa each day and get outside into the sunshine and fresh air. I take pleasure in the absolute simplest of things: the fresh air. The sunshine's warmth. The way the breeze whooshes through the pines. The cry of the mourning dove. The buzz of the bees from my volunteer hive. The flash of the oriole's yellow wings. The gift of a surprise bird's nest when cleaning out my flower pots. The horned toad basking in the sun while I plant a few little plants.

Regardless of what lies ahead for me, my first commitment remains to my quality of life so that I can continue to parent my children to the best of my ability each day that I'm here on Earth. I am still not without hope.

Released

2011-04-15T21:54:00.000-07:00

Another Milestone

Well I am still quite puny, but I achieved another milestone: I got released from Home Health Care! I celebrated by making breakfast for myself for the first time in too long a time, and boy was it good: chicken sausage links, eggs, hash browns, toast, and fresh-pressed apple juice.

My new mantra has been "do it myself." Just trying to do basic self-care (bathing, dressing, and meals) is exhausting exercise at this point, so it pushes me enough to keep me going forward.

I remain pukey and a tad dehydrated, but all my bloodwork is good, and I started getting Mr. Puffy injections again. So even though it's slow-going, I'm looking forward to feeling a little better each and every day!

A HUGE Milestone

2011-04-09T22:26:00.000-07:00

Wreckin' the Curve

One year ago today, I learned the diagnosis for my sudden hearing loss (Jan 12, 2010) and the palsy in the left side of my face (Apr 6, 2010) had been pinpointed as "leptomeningeal carcinomatosis"--cancer had metastasized to the cerebrospinal fluid and was seeding into the meningeal layer of my brain and spine.

I tried to look it up to read about it, but my blood felt LITERALLY like it had turned to ice water in my veins. The only hope I could take from anything I read to do with that diagnosis was that I had already outlived the prognosis (4-6 wk without treatment). So who cares what the prognosis is now that we've diagnosed it? Obviously, prognoses are just statistics, and statistics are just damn lies (as Mr. Twain explained).

But of course, I was aware of what the prognosis was -- six months with treatment -- and what that standard treatment is (intrathecal Methatrexate). Instead, I tried something different -- something that made better sense to me. And I was blessed with getting to the right doctors to help me.

And, in a reality that is a historical landmark, we were successful in seeing all the cancer eradicated from my brain. Twice now, in imaging, spots have showed in my brain again; most recently in the January scan. And at this point, we do not know yet the results of our efforts to eradicate the spots in the meningeal and now the parenchymal tissues of the brain and spine with radiation. But it has been ONE FULL YEAR since diagnosis, and I AM STILL HERE. And I am still puny from radiation, but I am STILL GOING. I am barely able to get off the sofa and still need lots of help, but I am here and happy and enjoying each day. And that's Life!

First Day

2011-04-03T21:35:00.000-07:00

Off the Sofa

It has been over a week since they stopped radiating my body, but I am not just bouncing back quite the way I thought I would. The doctor told me the radiation will continue to kill cells for approximately four or five more weeks after we stopped. No wonder I am feeling so low! My white blood count was a mere 2.0 this week (on a scale that starts at double that).

I still require home health care and have been stuck on the sofa. Yesterday, I tried to sit myself on the edge of the tub to help get myself out -- and boom, boom, out go the lights!!! Obviously still too puny to do anything.

I am still taking the Rx eyedrops to fight the radiation blindness, but today I could stand it no longer. I escaped the sofa and the house to sit in a chair outside in the fresh air. So even though it wasn't much, I'm declaring this my first official day of escaping the sofa.

This process is incredibly slow-going. But I remember well what I learned on Whitney -- just keep putting one foot in front of the other and don't stop moving in the right direction!

GRADUATION DAY!!!

2011-03-24T23:05:00.001-07:00

After Six Very Long Weeks

I've survived whole-brain and -spine radiation, but barely! It's taken home health care and family members getting me up, dressed, and into the city for fluids daily. I am struggling and miserable, but I am still here and looking forward to feeling better every day!

One happy surprise was noticeable immediately to me: no "lightning" show in my head. "Hey, I'm not getting the same dose!" Yep, and only two blasts to the head-- no more whole-spine rads these last four days. HALLELUJAH! Lord knows my digestion system needs the break.

I also am still struggling with the "snowblindness" caused by the whole-brain radiation (WBR), so I will have to write more when I can. Meanwhile, I am just so very very grateful to have made it through the entire Rx of radiation!

The last day, smooshed facedown to get a "brain boost" dose of radiation.

Aw, they even gave me a certificate!
Good, because I feel like I EARNED this one the hard way!

The brown tracks on my head weren't there when I lost my hair-- they give away where the edge of the radiation fields were!

NOT GIVING UP!

I'm Gonna Crawl

2011-03-23T12:29:00.001-07:00

Over Broken Glass

It has been quite the fight since I last posted on the 14th. First off, I've been unable to get/keep/digest any nourishment to speak of in me since March 10th. Second, I can't stop vomiting; and third, I can't stop losing a bucket's worth of water with each and every bout of horrible diarrhea. Sorry for that graphic, but this is the nitty gritty part of what it means to fight and survive cancer.

The whole alimentary canal is insulted from the relentless radiation to the point of where I can't even swallow water! I normally drink 2 L of water each day IN ADDITION to other fluids. Now, I reserve swallowing for sips of Zipfizz or Odwalla's Vanilla Almondo, trying desperately to get as much bang (nutrition) for the buck (pain) as I can. We also try to get bites of yellowfin tuna in me. I can only get a few bites in me; my fluid intake is scarily low (24 oz yesterday).

So to avoid hospitalization, I have/had to go EVERY SINGLE DAY for these past two weeks into the city to the Infusion Center to get IV bags of fluids/potassium. The hour ride there is hellish for me; my entire digestive tract behaves as if it's been destroyed by radiation poisoning. I can hardly swallow or breathe for the swelling in my throat and esophagus; it feels like I have suffered "clothesline trauma" (just ask anybody who has ever run full-speed into a clothesline what that's like). And I have terrible pains and cramping from literally STARVING because I'm unable to properly nourish myself---the cramping folds me over and my stomach feels like it is WASTING. On the other hand, it also screams pain at me for 20 min if I get even one bite into it.

AND then there's the very real, dangerous issue of the fact that my input is greatly lagging behind the outflow. This is so NOT GOOD.

Last Saturday, I got my first visit from my home health nurse. He told me I was dehydrated AGAIN and would need to go in for fluids. I thought the nurse could do that and save me the trip to town. Nope, have to have a hospice nurse for that! But he did tell me one thing I didn't know -- I could go on hospice temporarily and then go off it. Something for me to consider!

Since pinching my skin isn't really working as a test for me, I asked him what other symptoms I might have.

"Headache, nausea, the weakness in your arms and legs..." Well, I passed that point weeks ago, and those are symptoms I'm typically dealing with throughout each day and night. "Confusion, lightheadedness, fainting, more severe muscle pain and cramping..."

Ok, been there, done that, too. But that gave me a good measure to go by, and by 8:30 Saturday night, I could tell I was getting worse and worse and that we needed to go to the ER. We had me ready and in the car by 8:50 and took a leisurely "dry run" to our newest hospital. Good thing, as it was raining AND we hit a few detours for road construction! We arrived by 9:30. I waited in the car while they retrieved a wheelchair and mask (low white blood cells, currently) for me, then I sat all covered up in the foyer of the waiting room so I wouldn't be in the general populace.

Unfortunately, hanging in the ER to be seen as the small-potatoes case meant seeing a lot of stress, heartbreak, and trauma in the people constantly entering and exiting the ER. I'm not sure what time they called me back, but it wasn't an excessive wait like the other ER. And we hadn't found any Urgent Care places open this late on a Saturday night.

Once I was called back, life got A LOT better. The nurses and doctor were great; the (private) ER room was state-of-the-art and beautiful; and they even cleaned it extra-special for me because of my low white blood count.

I informed them I am on the way to the cure, but that I require just a little bit of help from them along the way: hydration. They inform me yes, I do indeed need to be there for hydration, and draw blood. Boy, were they surprised and happy to see ALL I needed was hydration; I am holding my own on electrolytes and protein! The doctor told me she was impressed at how well we are taking care of me despite the obvious dehydration.

Getting the first bag of IV fluids helped ease the nausea and horrible abdominal cramping, and I felt HUNGRY! But that's been the frustration of this --- I'm SO HUNGRY that I'm starving and yet I physically have not been able to eat or digest food. Well, I was sure gonna give this opportunity (feeling better from hydration) my best try!

"Will you go get me a double-double with just meat and cheese, pickles, and grilled onion? And have them cut it in quarters?"

My caretaker thought I was crazy. "Can you even have food in here?"

I thought my caretaker was crazy. :Like we can't nourish me?"

We worked it out, and I got the burger about half an hour later, just as I was dozing off. AND I even managed to get 1/2 of it into me!!! Yay! The nurse and doctor came to check me out, decided another bag of IV fluids was necessitated, and got it started. I closed my eyes and managed to doze some more, grateful for the warm food in me.

The ER finished up with me at 3 a.m. and we headed home. Now that we knew about the detours, the leisurely drive home in the rainstorm took us only 30 minutes. Not bad! And I really liked the care at the new hospital, in addition to its gorgeous appearance and new new new things. No more having to see that ER doctor at the other hospital who almost killed me in May 2009, THANK GOD.

After we got home, I made it under my own power (with my cane) from the car into the house to sleep on the sofa (I am still too weak to make it to my bedroom and my caretakers still have to keep an eye on me at all times).

And I am still hanging in here. One more week, I kept telling myself that early Sunday morning after we came home from the ER. But, oh, what that week has been like for me! And honestly, I'm still not ready to talk about it; so I think I will stop here and tell you more about this past (last!) week when I'm a little more stronger.

Thanks for staying with me.

On The Brink

2011-03-14T18:54:00.000-07:00

If the point of "burn and poison" is to bring my body to the brink of the death, we achieved that this weekend. Treatment finally overwhelmed my body. Last Thursday was the last time I got any food or drink to stay in me.

By Friday, my entire digestive system was shutting down from the insult of radiation. By Saturday, I couldn't even eat although I felt like I was starving and my stomach was cramping from feeling so empty. And all throughout, I was losing massive amounts of fluid via vomiting and diarrhea brought on by the radiation (poisoning).

Sunday came, but I didn't get up to see it. I was just too weak, too ill, and too sore. By 4:00 p.m., my family knew something was wrong and showed up to take care of me. They were ready to load me up and haul me to the hospital, but I insisted we stay home.

"There's only two choices here: either go to the hospital and get fluids in me until the doctor can see me tomorrow; or stay here and get fluids in me until the doctor can see me tomorrow. And HERE is safer than the hospital!"

We tried all night to get fluids and meds in me to mitigate the fluid loss, but the vomiting and diarrhea were just uncontrollable. What a miserable night! I finally got some sleep around 8:00 a.m.

Which, unfortunately, is when I *should* have been riding to the doctor, if we'd been thinking clearly. As it was, I made it there in time for my afternoon appointment. The doctor knew something was wrong the instant I walked in. I was too weak, and he thought I even LOOKED dehydrated. I'd dropped quite a bit of weight very rapidly, too. He suspects my potassium has dropped low, so he sent me straight to the blood-draw station and told me to come back for IV fluids in the morning.

I told him I wanted to quit radiation, that my entire alimentary canal is too insulted to continue. I can barely open my mouth to take a bite for the TMJ. I can barely tear a bite or chew food for the gum and teeth issues. I can't bear to swallow for the raw, sore, SWOLLEN throat and uvula. The acid reflux/heartburn/indigestion is IMMEDIATE and on a scale I couldn't have even imagined -- and even water triggers it. My stomach hasn't digested food properly since last Thursday morning; it hadn't even emptied itself in 11 hours when I vomited Friday morning! My stomach and guts are cramping in pain, from hunger as well as vomiting, dry heaves, and inflammation from the insult of radiation. The frustration and even despair I feel is genuine.

I am now so weak I cannot care for myself. I cannot shop for groceries or drive myself to my daily appointments. I cannot prepare my own meals. I require assistance to do laundry, bathe, and dress. It is finally time to request Home Health Care. The doctor is ordering it and we will see what coverage we might have for it.

Well, for all my whining, the doctor wouldn't let me quit radiation. It's a very very BARBARIC weapon, but it is still the weapon necessary at this time. He told me they would help me get through it, but get through it I must. Even though it is the radiation that is overwhelming me and NOT the chemos I take, we did opt to at least drop everything else while we get me through all the rounds of radiation. The doctor feels that should reduce some of the toxicity with which my body is having to deal.

So, I'm staying out of the hospital and sticking with round-the-clock care at home and at the cancer center. I made it through today's radiation, but BOY do I feel ILL!

Hair Today; Gone Tomorrow

2011-03-12T08:55:00.000-08:00

The Incredible Three-Day Hair Shower

It was nearly eight years ago that I learned I would probably lose my hair to the chemotherapy regime being prescribed then. I contacted someone I knew had lost their hair before to therapy and asked what I could expect.

"It falls out over a course of a couple days about three weeks after you start," he told me. Boy, was he right. That is EXACTLY what happened. I still remember what an incredible and strange experience it was

Since then, I've been blessed to not go completely bald all at once; my hair has fallen out so slowly that I usually have SOME growing. Not so this fourth time!

When I woke up on Sunday and jumped in the shower, I noticed a larger-than-normal amount of hair coming off my head and sticking to my hands as I was trying to shampoo. Uh-oh! I know what that means! The incredible three-day hair shower has begun. I quickly grabbed my trusty losing-my-hair drain cover to spare our pipes from what I knew was coming.

Honestly, having it start to fall out is a RELIEF, because the radiation already killed those hair roots after the very first dose. Since then, I have felt every single one of those zapped hair roots as they have itched, stung, prickled, and felt like red ants biting my scalp since radiation began last month. And my hair doesn't even LOOK good; the radiation has destroyed it. The only purpose it is serving me right now is as SOME warmth for my head.

Still, I shampooed gently with the recommended baby shampoo, not rubbing and trying to let the hairs fall out as "naturally" as I could. I stepped out of the shower and surveyed the damage:

Day 1: After the morning shower and (light) baby shampoo.

When I told the others the hair shower had begun, they weren't quite so sure. "It still looks okay," they told me as they surveyed my head. Yeah, that's just 'cause there are A LOT of hairs on my head! And I do have a ways to go before they are all out. Like I said, it's an incredible three-day hair shower.

So Sunday night, my head was itchy and prickling and I tossed and turned from it. Monday morning, I repeated my shower and gentle baby shampoo rinse:

Day 2: After the morning shower and shampoo.

Surveying the damage afterward, the accumulation from Sunday's and Monday's showers was starting to look more significant:

After Sunday's and Monday's morning showers, the loss is more obvious!

Did I mention Sunday night was kinda miserable, with all those itching, prickling, stinging, hair roots? Well, that was NOTHING compared to Monday evening and night. Everywhere I went, hair plopped behind me in CHUNKS. Everytime I bent over the computer keyboard, hair plopped into the cracks. Everytime I went to take a bite of food, hair fell onto my plate. Laying my head on the pillow to sleep was impossible for all the ITCHING. I had hair down my back, itching me. I had hair in my eyelashes, poking my still-sensitive (sunblind) eyes. When I slept, hair got sucked into my nose and fell into my mouth. HAIR EVERYWHERE. Ugh.

Tuesday morning, and the next shower. By now, if I didn't know better, I'd have thought somebody had punked me during the night with a bottle of Nair or something... hair was beginning to come out in HANDFULS.

Day 3: After the morning shower and shampoo.

Now, the hair thinning/loss was much more obvious. AND...I could feel a kind of reverse "V" where my scalp was bare going up the back of my head, making it easy to know where the beams of radiation are being concentrated the most. I opted to wear a hat to hide the mess.

But by the time I got home from Tuesday's radiation, I'd had more than enough of this awful stuff posing as hair on my head. It just wasn't worth it. I told everyone I was heading back to the shower, and this time I grabbed the shampoo and SCRUBBED my head.

The hair continued to come out, clump by clump, as I gently rubbed my scalp and repeatedly rinsed it with a blast from the sprayer. If it hadn't started on Sunday, I would've SWORN someone had punked me with a bottle of Nair, it was that DRAMATIC. By the time I stepped from the shower, I had only a few wispy long hairs standing straight out, making me look like the old toy character you magnetically "put hair on" from the days of my youth.

Day 3: Second shower and shampoo; there goes the rest of it!

Bet it doesn't look this bad when you clean your shower!

We got the clippers out and trimmed the few remaining strands down to a more reasonable length (astroturf). Then I returned to the bathroom to survey the final damage:

It looks (and even sorta feels) like steel wool instead of normal, nice hair.

And by the end of Day 3, virtually all of my hair is now in the wastebasket!

When I went for radiation on Wednesday, the tech stared at my bald head.

"I just saw you Monday, and you weren't bald!" she said.

"Oh, I washed the rest of it off yesterday," I told her.

"You can do that?" she asked.

"Just like someone put a bottle of Nair on it."

And that my friends is the Incredible Three-Day Hair Shower. Fortunately, most radiation oncology patients do NOT get whole-brain radiation, and thus do NOT experience this phenomenon. And many of today's chemotherapies are much gentler and do not elicit this result. But if you DO find yourself facing it, all I can say is just keep showering till the itching stops!

Another Anniversary!

2011-03-08T20:54:00.000-08:00

Four Years (and Halfway)...and a New Buddy!

I reached a very important milestone today; it is the fourth anniversary of when I learned cancer had returned and spread throughout my body. The news was very grim then: cancer had metastasized to my liver, leaving my life in imminent danger; as well as to my lung, lymph system, pelvis, bones in my spine, ribs, sternum, shoulders, and face. Cancer had even eaten one rib in two; we know now that it would take more than three years to heal.

My doctors are first-rate; nobody "sent me home to die." We decided to never give up, and here I still am. Drugs that have saved my life weren't even available when I first began this journey. And hope that I have now for a cure wasn't even on the horizon. So I am determined to make it all the way to the cure; I know this: each day I live is another day closer to the day we have the cure!

I have more reason to celebrate today: I received my twelfth dose of radiation, which is the halfway point. Twelve done and twelve to go. It's grueling and painful, so I am happy to be on the coasting-downhill side now. I am determined to make it through all 24 prescribed doses.

And I have the best news of all: I am very cheered up by the arrival of our newest golden, a male to keep my girl company. My new hiking buddy is a more creamy golden retriever, and he is just 7 weeks old. Rosie absolutely adores him; I think she thinks he looks just like her little brother!

So, meet Buddy! It won't be long till you see us out on the trails.

Buddy.

Buddy and Rosie are already inseparable and play tug-of-war together.

Snowblind!

2011-03-05T18:28:00.000-08:00

When Lightning Strikes

Remember that lightning in my head/eye I told you about last post? Well, guess what--it turns out that luminescence was something the radiation oncologist called "backscatter" from the "scatter" type of radiation to which we are subjecting the dura of my brain. As the "backscatter" hits fluid in the structures of the eyes, it sort of flouresces it. And that is apparently what has "sunburned" the retinas of my eyes.

At first, I thought I just had dry eye again from the small tumor shown in the MRI to be crowding the Internal Auditory Canal. So I treated it as my opthamologist has taught me, putting in special drops and taping my eye closed at night. That seemed to take care of it, and although my eyes felt "itchy" all weekend, it was okay.

I also got an additional 2-day reprieve from rads because the machine required repair. So it was Wednesday before I received radiation again. By then, the eye was unusable, constantly dripping and causing my nose to incessently drip. Hey, shouldn't it be getting BETTER, since we're zapping the IAC for cancer cells??? I had no choice but to tape it shut around the clock, not just at night. The techs asked me if I wanted to see the radiation oncologist, but I assured them I was doing what the opthamologist has me do for what I thought was dry eye.

Unfortunately, I woke up the next day with it MUCH WORSE. You will not believe how such a little nuisance thing can make you SO miserable. In addition to the constant weeping of the eye and dripping of the nose, the eye itself feels like there is broken glass and razor blades in it, even with the eye closed. Trying to use my eyes was impossible and only made my head ache. I gave up and had to close my eyes until this situation improved. It is a truly painful condition.

So Thursday night, I'm standing in front of the mirror, blinking and trying to see to brush my teeth between keeping my eyes closed to mitigate the razor blades and broken glass feelings. Why does my HEAD look CAVED IN? I touch by my temple. OUCH! Not only is my head now concave there, it's also very painful to touch. I get DH, and he verifies this is not my imagination -- my temple has clearly caved in and is now weirdly concave. We check carefully for any signs of swelling, which may indicate hydrocephalus (a very horrible possibility when fighting mets to the brain). I see none. It is clearly not a swelling above my temple, it is a concavity at my temple.

I call the doctor on call and leave a message: "I don't think this is an emergent situation; but if it is, please call me back!" Friday finds me consulting with the radiation oncologist before undergoing my daily rads. And guess what -- he's never seen anything like this concave appearance before. Weirdness idiosyncratic to me. Gotta love it.

By this time, I'm being LED around, temporarily blind, as I MUST keep my very painful eyes closed at all times to mitigate the misery. The doc spotted right off that this was not dry eye, but that the retinas have become "sunburned" by the "backscatter." He told me the drops I was using were NOT going to do the job, and wrote two prescriptions for me.

He also surmises that the concave appearance at the temple might actually be caused by inflammation of the optic nerve. But basically, we don't know; and I don't think I dare stop rads because of it. But boy, you can sure tell by that dent what a WALLOP the WBR packs!

So all weekend, we have administered the antibiotic and anti-inflammatory eye drops every 8 hrs, and the eyes are improving. I think it will be better very soon! At least I can see enough now to attempt some reading and writing. Stay tuned for whatever lies ahead next!

Another Tour

2011-03-02T12:08:00.001-08:00

7/24

No, I'm not dyslexic...I've now completed 7 of 24 rounds of radiation. And it makes me feel ill pretty much 24/7, but I'm still hanging in there. One foot in front of the other, just like on the backside of Whitney. Yes, it's hard and slow. One of the hardest things I've ever done, definitely. But we keep checking the clock, and so far we think there's still enough time to reach my goal. So I press on.

I knew beforehand the drawbacks to doing WBR and whole-spine radiation. When it became clear I wasn't going to be able to skip it altogether, I knew what I was in for -- another tour of the Valley of the Shadow of Death. And that, it is. But after only two rounds, I could already tell the difference in the spinal nerve roots in my lower back, so with the misery from radiation has come relief from cancer, making the nuisance stuff more worthwhile to me.

Here's what a day in my life is like right now:

I wake up out of a sound sleep, knowing I am about to VOMIT RIGHT NOW. I grab a trashcan next to me and throw up into it. There is nothing in my stomach, but I am throwing up white foam that tastes like NASTY medicine from my oral chemos the night before. My head hurts, too. I stagger to the bathroom, on feet that sting and burn with pins and needles and PPE, where my guts then explode for the next 15 minutes. I finally get to brush my teeth, and note part of the gum at the base of my teeth is starting to die. I go back to sleep until I feel better.

After I get past all the neuropathy and PPE in my feet and hands, bouts of diarrhea, body rash, and the extreme nausea from the chemo and radiation each morning; I crawl into the hot tub and start doing range-of-motion exercises. I then slide into the softest cotton clothes I can find; I can't use any lotions before radiation even on the rash. I also can't style my hair with heat or it will increase the chances of it not growing back, so I settle for wearing a hat. I tape my dry eye shut and then somone drives me the 45 minutes into the city.

Once at the radiation center, I change into the gown in the little cubby with my name on it. I usually don't have to wait too long before it's my turn for the machine. I head through the thick doorway. First thing is to ensure I am aligned PERFECTLY. I lie on the rads table in the "cradle" made especially to my body and am then pinned down (smooshed into foam facial blocks positioned and retained just for me) by a net mask made for me. It is the same kind as we used for Cyberknife, only this time I am face down instead of face up.

Click on any picture to see larger photograph.

Pinned and smooshed face down to hold the head in place for whole-brain radiation (WBR).

Once I'm pinned on that table, I am completely into my role on the radiation team, as are the techs. While they work busily over me making VERY IMPORTANT measurements and markings, I focus on visualizing cancer cells being ablated while healthy cells remain under a wing of protection. The techs' work requires such concentration, and I am so pinned, that I'm just the piece of meat they are working on at that point. The techs use a variety of tools to ensure my proper alignment, and then everyone leaves the room through the 2-ft-thick door and I am alone and waiting.

Ensuring the proper position for WBR and spinal rads.

They all exit the very thick door and leave me alone with the bursts.

The techs retreat to a remote control room on the other side of the building. There are no windows into the room in which I lie; they monitor me and the machinery via camera. Pinned face down as I am, inside the net mask, I really can't see or hear much, but I always know when the machine is getting ready to blast me by the clicks it gives beforehand.

The techs monitor and control the action from a remote control room.

And then I get the first blast, to the brain. The radiation oncologist is giving me a big burst of scattered radiation to the dura of my brain, and it is one heck of a wallop! Although my eyes are closed, I see lightning bolts of greenish blue-white light as the radiation hits the structures of my eyes. It's the same whether my eyes are open are not; I can "see" this energy. (The tech told me it won't matter if I close my eyes or not, because my eyelids can't block the radiation.) It is NOT visible on the camera, and therefore is probably not visible to others if they WERE in the room. But I can very much perceive the radiation energy, and I can smell an ozone smell as the burst of energy vaporizes any dust particles in the air.

The machine repositions for the second blast to the brain. The same thing happens again: lightning in the head and the smell of ozone strong in my nose. I stay focused in a meditative-type state. The techs return to reposition me and the equipment for the whole-spine blasts.

Unlike Cyberknife, the techs must reposition me, turning the table after bursts.

I have no participation while I'm repositioned and the techs again leave. I am almost oblivious to the spinal blasts (two); there is no accompanying lightning in my head and I can't really feel it while the machine is blasting me. Only the buzz of the machine tells me when my spine is being radiated.

After repositioning and blasting the spine twice, the techs finally return and free me from the net mask. HALLELUJAH! does that feel GOOD! I am always so happy. But wait -- it's not quite that easy to get off the table. Because by now, I'm feeling like I've been walloped upside the head pretty durn hard! I'm lightheaded, dizzy, stumbling a bit. Every now and again, it will burn a little on my back from the spinal rads, just like a burn or sunburn.

Afterward, I'm tired and feel a little beat up. And I go to bed knowing I'm going to get up and do it all over again each day for weeks. I just hope I don't wake up puking out of a sound sleep every morning.

STILL GOING!

It's Always An Adventure

2011-02-18T12:09:00.000-08:00

Here I Go Again

After getting the disappointing MRI results, I made the rounds of all the relevant doctors (such an awesome team, truly). The radiologist who has been reading my brain MRIs all along is very good, and her opinion is that the enhancement showing *is* active metastasis. The oncologists aren't so sure, but do agree that *if* the enhancement is active metastasis, what we are currently doing is not going to be enough to treat it (in the parenchymal tissues as well as the LM).

So we decided the more prudent thing to do is treat me with the whole brain and spinal radiation that I turned down last July/August (after MRI showed no more active mets in the brain). It's been a flurry of activity as I see all the doctors and get started with the oncological radiation department. I had to be measured and marked and tattooed and pinned facedown with another one of those masks (like Cyberknife used) as we lined me up in a CT and then with the actual radiation equipment. I'll skip over describing for you how torturous some of those appointments became for me!

And then I got the call. Even with our awesome insurance covering much of my costs, I will still need to pay hundreds of dollars each week for my treatment!!! Coming at a time when we are broke, are owed money by others, and got hit with a $860 electric bill followed by a $1500 one; all I can do is trust that God will continue to take care of me financially as well as physically. Clearly, now is NOT the time to make all those trips to Seattle.

Somewhere in the middle of all this activity and stress, DH managed to take a day off from work to spend Valentine's Day with me. Given our bills, we settled for the cheap date that I often am -- and simply took my new dog and went hiking at our local Punchbowl.

Click on any picture to see the larger photograph.

I love that Punchbowl vista!

My girl is coming along so well now that she lies down in the car and rides like a pro. She already walks so well on a leash that she virtually NEVER starts dragging me. And boy, does she LOVE hiking with us! She is so well-behaved when she hikes with us, more mature than I would ever expect a 4-mo-old puppy to be. We love her and are already SO attached!

This was her longest hike to date; we walked at least 1 mi out on the Burkhart Trail, making it from manzanitas to mountain pines before we turned back. I love this walk because it feels a bit like Hansel and Gretel; the manzanita starts off as the bushes to which we are accustomed but quickly becomes large, old, twisted TREES tangling the terrain.

We walked all the way to the first big hairpin in the trail after the junction with the Devil's Chair trail, admiring the transition from high-desert to mountainous plantlife. There was a nice flat spot above the trail at the base of a twin tree; that's where we popped open our picnic and enjoyed the spot. DH smoked roast beast and fresh fish and brought that along with dried fruit and nuts for us to eat. It was delish! Only problem was, we forgot to pack the dog's lunch! So we broke a cardinal rule, and shared ours with her. We did work on enforcing that she couldn't just help herself!

"I can see my house from up here!"

The way we came.

Picnic spot at base of twin tree.

Save more of the trail for another day!

Picnicking on the mountainside.

I felt SO GOOD and the day was so beautiful, blue skies and sunshine and just cool enough that I never had to peel my sweater. The chemo rash stayed Grade 1, and I simply stepped into shade anytime the sunshine started triggering the itching.

First glimpse of Mt. Williamson on the return.

First glimpse of home on the return.

It was so beautiful and I felt so good, that I attempted a little experiment. I ran (about a jogging pace) approximately 150 ft! My feet, although numb, kicked into muscle memory mode after the first few steps, and I was really able to do it! And then I stopped, because the jarring on my spine (and those spinal nerve roots) was OBVIOUS.

A Punchbowl canyon.

But I also wondered if there were any neurological symptoms showing yet, so I tested myself by skipping. Yes, skipping. Like most of us haven't done in over 40 years. And not only did I immediately remember HOW, I could also DO it. So I think I'm doing great, and I do wonder if it is NOT mets that is showing in the brain MRI.

I told her to walk herself while I took a picture, so she did!

We arrived back at the parking lot just as the sun was sinking behind the mountains, just as we had planned. Total trail time was 2.5 hr. All in all, a very nice Valentines day!

MY GIRL!

Speed Bump

2011-02-05T18:11:00.001-08:00

Saturday, February 5, 2011

The Long and Winding Road

It's February, and I thought for sure I'd be making my travel plans for Seattle by now. Unfortunately, I hit a speed bump along the way.

I had all my ducks in a row to get into the Seattle clinical trial, and only needed to get an updated MRI to show there are no active spots in the brain. So I went in, excited to finally be at the last step on the admissions checklist. Hakuna Matata, ya know? ROUTINE.

Imagine my surprise when the doctor got the results and it showed what the radiologist believes is active metastasis in a couple (new) locations! Surprise was not the emotion I showed, however. I felt like I'd been kicked.

Well, you know how much I hate bullies, and cancer is just one big bully that I am DONE messing around with; so I have decided to call in the BIG GUNS! I turned down WBR (whole brain radiation) and spinal radiation last August because the spots were all significantly decreased in size or GONE, and there were no active spots in the brain. It just wasn't time for that bullet yet! Well, now it is.

The MRI shows a new growth in the IAC, as well as a spot growing into the outer tissue of the cerebellum and the spinal nerves at C1. I need to get the remaining spots out of the spinal nerve roots as well as these new spots showing in the cerebellum/IAC areas of the brain, and then I will have to wait a few months to get more imaging.

So now I'm thinking Spring probably IS the best time to visit Seattle the most often, since I have to make so many visits (especially in the beginning) once I'm accepted into the trial. So, onward and forward -- at least we have a plan. We've increased my meds back to the level it was at before the PPE (Hand-Foot Syndrome) and other side-effects got so miserable for me. We're also going to increase the intrathecal dose in Mr. Puffy. And in a couple of weeks, I'll start radiation therapy every single day, five days a week, for approximately four or five weeks.

The stereotatic radiosurgery (like Cyberknife and Gamma knife) is not going to be appropriate this time, because once again the leptomeningeal metastasis is seeding in like icing ("zuckerguss") -- and thankfully, so far it is VERY SMALL. So this time seems to be the appropriate time to use that lone field-radiation bullet!

I'm disappointed in the delay, of course; but I've learned to be a patient patient. I still believe I will walk the path all the way to cure. Meanwhile, DH notices I have a little more trouble walking again. I'm fatigued enough that I had to pass on hiking with DLB while he was here to visit, but itching enough to get out there that I can't resist doing "recon."

Today I took a little drive in Big Blue with my posse; the Brown Dirt Cowboy came along in case of trouble. We headed out a truck trail, doing recon for a ridge I want to climb. I found the best place for us to intersect into the trail (the actual trailhead is closed due to arroyo toad habitat), but BDC called me back the instant he saw me start climbing. I'd seen enough; I knew we were in the right place. I'll be back with walking poles and boots! Meanwhile, it made a great little outing for the posse and a nice little drive for us. But oh, am I itching to get out on the trails again!

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

"Hurry up!"

I'm nearly positive the intersection with the trail is right at the top of this little crest, but the Brown Dirt Cowboy made me turn around!

It was a nice little workout grade, I have to admit!

The view (looking back the way I've come) from where the BDC made me turn around...

The New Button

2011-01-09T22:06:00.000-08:00

2011 is THE Year!

So far, I'm off to the right start for 2011. First off, I'm here! And considering the odds of surviving leptomeningeal carcinomatosis, THAT is saying a LOT! It's now been over a year since the LM symptoms first became apparent, and 8 months since I was diagnosed. I have clinically and neurologically improved almost back to where you would never know anything had happened. Even my smile is slowly returning, and I am still hopeful my hearing will be restored.

"Mr. Puffy" prepared for injection.

Second, I have been going every day, all day, for at least a couple of weeks now. It feels good to be functioning again, especially after the long weeks spent recovering from surgery and intrathecal infusions. I felt so good one day that I even climbed a hill behind my house -- DS and I went cross-country up about 500' elevation and back. We had a little picnic as the sun set behind the higher ridge above us.

Resting the legs and checking out how high we've come.

Looking up from our momentary resting spot,
you can't even see where we picnicked!

I started the new year by hiking the Punchbowl with DH and my new girl...the mile loop, that is! I haven't been able to do that since before the brain surgery. I had to wear the kidney belt to help brace my lower spine, but I managed to do the whole climb without too much difficulty. I even enjoyed the deep clay mud, but I was glad I wore my boots! Unfortunately, I misplaced my camera the night before and didn't get to take any pictures. (I've since found where it had slid inbetween sofa sections.)

Third, I am pressing in on trying to get into the clinical trial in Seattle. This is the year my immune system is fixed, once and for all, and we will document it! I only semi-jokingly tell my doctors that if Seattle wants to refuse me on the basis that they don't think I"m stable/healthy enough, I'll outhike them on any Mt. Rainier trail to prove they should let me in!

And the most amazing thing has been happening --- money (donations) started showing up from all different quarters, including those to whom I normally donate! So I think there must be a supernatural plan afoot for me to get to Seattle for the 11 trips it's going to take to participate in the study. Thanks to my friends and the acupuncturist, I'm READY to go!

Since I was asked to add a way for others who don't personally know me to donate, my IT personnel was kind enough to add a new donation button to my blog. Please know that I have been overwhelmed (verklempt!) at all the generosity that has been shown me. I am truly blessed, and I thank you for the blessings you have poured out to me!

I Got A New Girl Now

2010-12-19T01:40:00.000-08:00

Sunday, December 12

First Hike
Burkhart Trail
~1.5 mi total

No, not my first hike -- my new hiking buddy Rosie's first hike! And her first time walking on a leash, as a matter of fact! I was very pleased with how well she did. I'm also happy to report that despite her dog-in-training status (which makes her a dits), she is well on her way to being a lady -- she instinctively knows to step OFF the trail to potty! I still have splits in my fingers keeping me off the 'puter, so enjoy the pictures...

The newest member of the family.

So small! (Nine weeks old.)

Posing on the bench at the loop/Burkhart trail junction.

Come on, let's go!

Teaching her not to go over the edge!

A lovely walk on a beautiful winter's day.

Can you hear the water?

Okay, now SHE wants to rest! Didn't you just drag me away from the bench view?

No, really -- I'm just a little puppy. I can't go far!

Okay, I'll take a pano of the view while you rest.

She made it all the way to the water tank -- seven-tenths of mile.
Not bad for a little puppy!

The Punchbowl is a perfect place for any level of hiking...
and it was a good place for a baby's very first walk!

Thankful

2010-12-04T22:42:00.001-08:00

Sorry for not posting lately; I had a bit of a setback in that the toxicity from the chemotherapy got to be a little too much. We really don't want to kill me while we're trying to cure me! So I have had to focus very hard on surviving and helping my internal organs function.

What's worse, the toxicity resulted in the hand-foot syndrome, complete with painful blisters and fissures and deep splits. My fingertips were not spared, so I have been unable to type and communicate with the outside world via cyberspace. Frustrating!

I did receive my imaging results in November; everything is looking MIRACULOUSLY good. There are no leptomeningeal metastasis (LM) spots in the head, just the ones in the IAC that were ablated with Cyberknife. Everything is stable or improving; nothing is worsening and there are NO new spots.

HALLELUJAH!

My oncologist told me I am the first patient he has ever had (in his 40-yr career) that has IMPROVED after being diagnosed with LM. See, there is always hope! So as you can guess, we had a very BLESSED day of Thanksgiving, grateful for all the good news.

The Valley of the Shadow of Death

2010-11-15T12:40:00.000-08:00

When I succeeded in climbing Mt. Whitney while fighting fourth-stage cancer, I thought it was one of the HARDEST things I've ever done. It is really hard to keep going when your entire body is rebelling and wants to quit, which of course has its parallels to fighting cancer. Now, two-plus years after climbing Whitney, I say fighting leptomeningeal metastasis (LM) is the hardest thing I have EVER done in life (and if you know me personally, you know it's been an adventurous life).

I haven't been posting much because each injection into the Ommaya reservoir has left me feeling ill afterward, much like flu symptoms. I usually start feeling better the afternoon before my next injection --- typical for us cancer patients, huh?! Start to feel better just in time for the next go-round.

Since Ommaya reservoirs are used frequently for childhood leukemia, my nurses who help with the injections into my cerebrospinal fluid via the O-res are pediatric oncology nurses. Because they usually work with scared, crying children, they have the BEST personalities and senses of humor. So having explained that, it should come as no surprise to you to learn they have named my O-res "Mr. Puffy." And it's a very fitting name, as he puffs up when we inject him!

Scientifically, what we have now done is inject Mr. Puffy with 5 mg, then 10 mg, then 20 mg over weekly appointments. I got to skip last week because of the holiday, so we did the 20 mg as a "double dose" the week beforehand. I wonder if we will do the same again this week, given that Thanksgiving is next week. (Where the heck did the year go? I do not have many memories of 2010 at all; my short-term memory has been hampered significantly by the oft-mentioned "chemo brain.")

After each injection, I tend to fall asleep when I arrive home and sleep several hours. I usually feel a little stiff when I awaken. I'm able to sleep that night despite the nap, and when I awaken the next day, the stiffness has become body aches/pains; I'm nauseated; and I tend to have a headache. I feel like I'm "coming down with something" or fighting a bug.

And to me, that makes sense. For we *know* the drug we are injecting seeks out the cancer cells and parks on their receptors, which then flags the cell for my immune system. So of course my immune system should be turned on to fight the foreign body (the now-targeted cancer cell), which I would assume would make me feel like I'm fighting a bug or have a flu.

So the bottom line so far is that I feel like I have the flu for 6 out of 7 days every week. Beats the heck out of how bad the LM felt last April and May!

: (

2010-11-07T15:17:00.000-08:00

Funeral for a Friend

In Loving Memory

of my hiking buddy and best friend
Sarah
August 1, 2001 - November 7, 2010

She kept good watch over me through all the toxic chemotherapy;
surely there is a reward for her beyond the grave.

Her "baby" picture, September 2001.

Hiking the Burkhart Trail in July 2009.
"Whaddaya stopping to rest for?"

October 29, 2010.
Tried to take her picture after grooming, but she would NOT hold still!

A Pioneer's Experience

2010-10-25T15:30:00.000-07:00

Blazing a Trail

HALLELUJAH!!!!!!!

Experimental intrathecal (monoclonal antibody protocol) treatment has begun!

Last week, I received the first of planned weekly injections into the Ommaya reservoir in my head/brain ventricle. Although we are using a monoclonal antibody that has been found in all studies to be nontoxic, there remains a big risk of infection in the cerebrospinal fluid (causing meningitis) simply from having to puncture the reservoir and risk carrying in a tagalong virus or bacterium.

Doctors don't usually give injections, you know? But because of the need for the sterile field and risk of infection, the doctor gets to do the injection into the reservoir instead of the nurses. So with the able help of two oncology RNs, they established the sterile field and slowly filled the reservoir.

I just lay as still as I could. All I could feel was the sting of the needle in the scalp, then nothing until I could feel the cap of the reservoir become more rigid and push against the scalp as it grew convex from the fluid going in.

What was actually occurring was that CSF was first removed from the reservoir and saved for cytological testing. Then, a saline flush was done of the line, and a mere 5 mg of the monoclonal antibody was slowly injected into the reservoir. This drug will slowly exchange with my CSF over time. We are hoping gravity will get it to the spinal nerve roots in my lower back, at least until we can try getting some of the drug into me via a lumbar puncture.

Like with a lumbar puncture, the medical professionals kept checking to make sure I did not experience any headache or other issues; and had me remain lying down for another 30 minutes after the protocol was done. I really didn't feel anything, just the push against my scalp of the now more rigid, convex reservoir cap.

I was tired, however, which might have been due to a lower blood pressure that day. So once I arrived home, I immediately slept.

The next day, I awoke feeling cruddy, like flu symptoms. I was nauseated, had a headache, and felt a bit achy.

"Is that normal?" my caretaker asked.
"How would we know?" I replied.
"Can't you call and ask the doctor?" my caretaker urged.
"How would HE know?" I replied.
"Don't they have other patients? Hasn't he done this before?" my caretaker persisted.

Uh, NO. I'm the first one they've had for this protocol. Remember? That's why it took so long to arrange.

Yes, this protocol has only been done on a few people in the world and only in very recent times, so I'm on a course that has no well-trodden path to follow. We will all be learning together; hence, I have documented my experience(s) herein.

The next-day headache was familiar; I used to get headaches like this. It definitely was NOT like the headache from the LM; it felt just like a detoxification headache, as did the other symptoms. So I was convinced that the drug had gone to work immediately parking on the cancer cells, so my immune system was BUSY fighting to rid me of these unauthorized invaders. And consequently, I felt like I was fighting a little bug.

Later that night, however, I started to get a bit of a stiff neck. Uh-oh! I need to be vigilantly watching for signs of CSF infection (meningitis). I tracked my temperature that night and early morning; it was fluctuating as low as 95.9 deg (yes, my body was going hypothermic. I didn't like that reading, so I was relieved a few minutes later to see it had returned to above 96 deg).

By the next morning, it was reading a more normal 97.2. Whew! I felt a bit better this second morning, too; although I still had a tad of flu symptoms. So I still believe that the monoclonal antibody has my immune system hard at work on clearing all the cancer cells out of the CSF.

I've had little energy and really have been sofa-bound, but it's clear to me I will survive until the next i.t. injection this week. Each injection gives me more ammunition with which to fight, and I can see clearly how to get to the cure---as long as everything goes JUST RIGHT...

Meanwhile, I've been entertaining myself with my newest hobby: guinea pigs! Wonder why I feel a kinship with them these days?

The Waiting is the Hardest Part

2010-10-20T13:02:00.000-07:00

It's Darkest Before the Dawn

It has now been six months (plus) since I was diagnosed with leptomeningeal metastasis (LM), and I'M STILL HERE!!! Furthermore, I've mostly enjoyed a good quality of life. But lately, the hardship of fighting cancer has been harder to take.

My central nervous system (CNS) is threatened by clumps of cancer cells floating in the cerebrospinal fluid (CSF) in my brain and spine. I am at serious risk of having a stroke or suffering serious neurological problems (including death) caused by blockage of the CSF. I already have experienced episodes of losing some control of the lower part of my body, due to metastasis to the spinal nerve roots. So life's been kinda tough right now for me!

One of the hardest parts is this waiting...I KNOW the injection of this drug into the CSF is what I need, and need NOW; but I feel a bit like a high-school student who has spent a lot of time and money getting ready for the prom and is now nervously afraid I'm being stood up!

The neurosurgeon required I wait two weeks after surgery before using the new Ommaya reservoir in my head, which is now UP. So we have spent this time trying to get everything lined up to get the first injection, plus we have still been pressing forward on trying to arrange getting the injection via lumbar puncture. But it is proving to be much harder than we had hoped!

Finally---after working with numerous doctors, nurses, office staff, and my insurance company customer service these past weeks---I have an appointment for TOMORROW to receive the first intrathecal injection via the O-res!!!

I fully believe this treatment is going to prolong my life long enough, and beat back the LM, so that I can travel to Seattle and visit the Tumor Vaccine Group, where I believe I will receive the experimental therapy that will cure me once and for all.

In the meanwhile, I've been remaining as peaceful and unworried as possible, enjoying the stormy weather that surrounds me from the comfort of my sofa, confident I will again spend long days in the sun.

A Picture is Worth a Thousand Words

2010-10-09T00:09:00.000-07:00

The Ommaya Reservoir

Gratefully, I am now home recovering from surgery to place the Ommaya reservoir!

The reservoir tube is placed down into the ventricle, where the cerebrospinal fluid is.

Drugs can now be introduced directly into the cerebrospinal fluid by injecting them into the reservoir cap.

Ouch! Still, not bad (comparatively)!

I've had more energy and feel better than I did before the surgery, but I'm not sure it can be attributed to the trepanation!

Still Going!

Briefly

2010-10-01T23:49:00.001-07:00

Okay, here is a brief update on a few things:

1. I am scheduled to have surgery to place the Ommaya reservoir in my head on October 6; I am expected to be released straight from ICU on October 7.

2. We are still trying to put together the logistics to do the intrathecal drug via lumbar puncture.

3. Since the hand-foot syndrome is caused by chemotherapy inflaming the small capillaries in the hands and feet, I opted to try using the EB Cellular Cleanse footbath to detox my feet. It's like it reset me; I'm not having the level of HFS/PPE that I was having before the footbath.

4. Oct 15 will be 3 months since my last imaging, so I expect we will be doing some and learning what my current status is.

5. I expect to be able to qualify for the clinical trial through the Tumor Vaccine Group in November, after I have my imaging results and have the intrathecal drug so I can drop one of the toxic chemotherapies.

Life is a little hectic these days as I juggle many duties while preparing for surgery!

The Light

2010-09-20T21:04:00.000-07:00

Okay, Here's The Plan...

I've been busy busy busy lately, studying every peer-reviewed research report I can to learn how I can best survive leptomeningeal metastasis. Then it took time trying to get to the right doctors to help me. My UCLA/JCCC doctor even got me an appointment with the doctor who discovered how to treat the subtype of cancer I fight(!), the man responsible for providing the ammo I've been using to manage fourth-stage cancer as a chronic condition rather than an immediate killer.

That doctor validated what my oncologists and I think is my best shot at long-term survival. So here's the two-part plan we've all put together to deliver the knockout punch once and for all:

First, we are going to introduce a drug directly ("intrathecally") into my cerebrospinal fluid (CSF). The way that will be accomplished is through lumbar puncture (read: a spinal tap) and also via a type of catheter placed in my head called an Ommaya (oh-my-uh) reservoir.

This two-pronged (literally) introduction method is the best way to get the drug throughout the CSF to find any cancer cells "swimming" in the fluid or lining my central nervous system with a layer of cancer cells like icing ("zuckerguss").

I will have to undergo some (routine!) neurosurgery to place the reservoir before I can receive the drug in my head. I have an appointment at the end of this week with the neurosurgeon at the House Clinic in Los Angeles. Meanwhile, I'm forging ahead with trying to get the lumbar puncture done to get at least that first dose of drug in there.

The second part of our plan is to get me into a tumor vaccine study. I have been in contact with the Tumor Vaccine Group at the University of Washington in Seattle, and am pursuing enrollment in one trial that sounds like the answer I've been waiting---and fighting---to receive. I think the vaccine will solve this little cell replication problem for me once and for all!

This is a throwback to my days playing quarterback -- it's 3rd down and at least 10 to go, nearly game end, and I can see exactly how to reach the goal in two more plays---but it's gonna be hard and everything has to go JUST RIGHT for the whole entire team. I DO NOT WANT to end up in a Hail-Mary-pass situation, because the odds of success for that route are NOT GOOD.

So for me, I not only believe I can see the light at the end of the tunnel; I believe the light is NOT that proverbial train!

Here's looking forward to celebrating more birthdays!

Four Full Months

2010-09-08T20:44:00.000-07:00

Palmar-Plantar What???

The infusion nurse asked me if I've been hiking lately. Sadly, the answer is "No"! Four full months of toxic chemotherapies have been cumulative, and I now feel poorly most of the time. Furthermore, I'm basically stuck on the sofa, thanks to a little side effect known as palmar-plantar erythrodysesthesia. I know---palmar-plantar WHAT? Let's just call it by its common name, hand-foot syndrome. Although that honestly just doesn't begin to describe it!

I'm blessed in that this side effect is only a Grade 2 in me; Grade 3 is pretty nasty and forget Grade 4 --- you don't want to know. Grades 3 and 4 usually result in the patient having to discontinue the chemotherapy. But even at only Grade 2, walking is difficult.

First off, it feels like someone has beaten my hands and feet with a two-by-four for an hour. Every day. For the past four months. That's what the little descriptions mean about the unpleasant feeling/burning/tingling. Yeah. You know, they leave this stuff out of the brochures for a reason!

Second off, they are on FIRE.

Third, any pressure (like repetitive typing) causes my fingertips to blister.

Fourth, cracks (and I mean PAINFUL cracks) appear as if by magic shortly after I receive the chemotherapy. Cracks and peeling in my heels. Cracks, peeling, and blisters in the pad of the foot. Cracks and peeling in my finger joints. Cracks in my NOSE and EAR even! AARGGH!

So here's what I'm doing for relief:

Nose: Salt-water flush (or neti pot) followed by swabbing the sores with hydrogen peroxide and Aquaph*r ointment.

Ear: Swabbing the cracks with hydrogen peroxide and Aquaph*r ointment.

Hand/finger cracks: Applying Aquaph*r ointment followed by liquid bandage.

Feet blisters/peeling/cracks: Monoi Tiare with iodine followed by Flexit*l Heal Balm and sometimes Aquaph*r ointment

And here's what I've found on how to put that FIRE in the feet out:

HOW TO USE HENNA TO TREAT HFS/PPE

MAKE IT
1/4 cup water
1/8 cup henna powder
A squirt of lemon juice

Bring the water to a boil, then turn off the heat. Add the henna slowly and stir until it is like cream of tomato soup. You will probably use about 1/8th of a cup. Add a squirt of lemon juice. Let it cool. (If you already have cracks, skip the lemon juice. It will sting.)

APPLY IT
Cover a work area with plastic bags or an old towel (henna stains). Paint a thin layer on your bare feet and hands. Use a foam or paint brush to apply it.

LET IT DRY
It takes up to 15 minutes to dry. You can rinse it off or put socks on and leave it until your next shower.

And believe it or not, that remedy is rooted in peer-reviewed research:

Invest New Drugs. 2008 Apr;26(2):189-92. Epub 2007 Sep 21.

Topical henna for capecitabine induced hand-foot syndrome.

Yucel I, Guzin G.

Department of Medical Oncology, Ondokuz Mayis University Medical School, Samsun 55139, Turkey.

Abstract

Capecitabine is a chemotherapeutic drug for use in cancers. Hand-foot syndrome (HFS) is side effect of capecitabine which can lead the cessation of the therapy or dose reduction. Henna (Lawsonia inermis) is a traditionally used plant of Middle-East that is applied on hands and feet. Some of cancer patients in capecitabine treatment who developed HFS, we recommended to apply henna. In these patients, six patients were grade 3 HFS and four were grade 2 HFS. Complete response (CR) were seen in four of grade 3 HFS and all of grade 2; two grade 3 HFS improved to grade 1. So far, in the chemotherapy, there was no need of dose reduction and also no side effect of henna seen. Clinical improvement in these patients may relate to anti-inflammatory, antipyretic and analgesic effects of henna. Prospective studies are needed to show this therapeutic effect of henna.

Anyway, I made it four full months before the toxic chemotherapies caught up with me enough to lay me a bit low for a little while. But one way or another, I'm still going!

Do You Believe?

2010-08-06T18:55:00.000-07:00

The Miraculous

I just knew those doctors were telling me past history, not my current story! So here's the answer to our prayers regarding the Good, the Bad, and the Ugly: for the first time in my oncologist's 40-year career, he saw someone with leptomeningeal carcinomatosis (metastasis to the brain and spine via the cerebrospinal fluid; referred to as LM) improve: ME!

The latest imaging shows there is now no more LM in the head; there are only the two lesions that we ablated with Cyberknife stereotatic radiosurgery, and they are diminishing as expected as the body carries away the ablated matter. One went from 6 x 3 x 3mm to 5 x 1 x 1mm, which they consider to be a significant decrease. My facial muscles and hearing are not yet restored, but I’m still experiencing fluctuations and am hopefully praying for complete restoration.

I was supposed to start whole-brain radiation this week, but those results SPARED me from that barbarism! I KNEW the Lord's report would be significantly better than the doctors’ words, and this imaging report is proof positive.

The LM in the spine is diffuse, so they can't really use Cyberknife on it. So I was supposed to start spinal radiation this week as well, but the newest imaging shows SIGNIFICANT IMPROVEMENT (again, for the first time my oncologist has ever seen) in the spine, including the spots that most threatened my mobility. So I am declining to do radiation.

The latest imaging results also allow me to avoid having brain surgery to put a reservoir in my brain to infuse very toxic chemotherapy.

So having made the rounds of all my doctors, it's official: I have miraculously clinically, radiologically, and neurologically IMPROVED. I happily peeled off all the radiation Xes because it's not necessitated at this time -- what we are doing is WORKING! THIS IS HUGE HUGE HUGE in the medical world!

Now I’m waiting to gain entrance to the dream team of doctors who are on the Stand Up to Cancer team. I think the newest doctor is going to be a perfect fit for me: this is the guy I’m supposed to see. And I believe not only is he the right guy, I'm the right patient/resource in the right place at the right time. I can see now the light at the end of the tunnel; cancer is FINISHED and we will prove it in this time.

I'm presently still dealing with chemotherapy side effects, so I am way behind on things. I still want to get up the trail report from our Kearsarge Pass trip! Meanwhile, I use the times I'm too miserable to sleep to take pictures of the sunrise... LIFE IS (still) GOOD!

Click on picture to see larger photograph.
Especially if you want to see the Aquaduct gleaming.

The start of another perfect day!

The Good, The Bad, and the UGLY

2010-07-07T21:18:00.000-07:00

I saw the newest members of the team, the neurosurgeon at the House Clinic in L.A. and the radiology oncologist at Cyberknife in Pasadena, last week. Here's what I got out of it---the good, the bad, and the ugly:

The Good

The dr says the person sitting before him does not match (defies) the imaging. He says whatever I'm doing, to keep on doing it! He will focus on treating my symptoms, not my imaging. He was clearly amazed, as the norm is only a downhill slide, not improvement like I'm seeing.

The Bad

Nothing we can do to regain the hearing or the facial nerves, although he does encourage me to continue exercising my facial muscles the way I've been doing.
I need to see an ophthalmologist regarding the left eye, because of both the cerebral nerve issue and the inflammation of the cornea the chemo drug causes. Also, my vision has deteriorated and needs assessment.
I have to do another lumbar puncture (spinal tap). I knew that was coming; standards of care require we repeat it until we have 1 positive or 3 negatives. (So far I've had one negative.)
The imaging shows the cancer in the spine is mostly diffuse cells ("zuckerguss"), so Cyberknife is not appropriate at this time. (It should be saved for "salvage treatment" if other treatments are not successful in beating it back.) I will have to undergo radiation to the spine (in sections). In particular, there is a very dangerous issue at T5/T6 that threatens my mobility. (Read: can put me in a wheelchair)
The tumor panel in LA is still recommending intrathecal infusion of chemotherapy (typically methotrexate) via an Ommaya reservoir implanted into the brain to deal with the leptomeningeal carcinomatosis and cancer cells in the cerebral spinal fluid. (I instead want to explore a very experimental option.)

The Ugly

The prognosis remains nothing but grim. With treatment, surviving 6 months is the norm. Good thing I've never been mistaken for normal, huh! Statistically, 15% make it one year. So far, no such thing as anyone surviving for years.

Since the cancer I fight is a rarer form, and Leptomeningeal Carcinomatosis is so rare a complication, I did ask how many patients he's treated that have this same diagnosis. Answer: One, and it did not go well. : (

OK, so now there's me! I'm up for pushing the envelope, but I wish the prognosis weren't so grim. But the only antidote for dying is living, so you know what I did after I got all this news -- I went backpacking!

So I'm WAY behind now; I still have to finish the Mt Islip photos and TR and now I have a TON of beautiful pics from climbing Kearsarge Pass out of Onion Valley in the Eastern Sierras this past weekend. So stay tuned -- I'm still here, and I'm still going, and I'll have more posted as soon as I get a break from all these doctor appointments!

Panorama of the view from Kearsarge Pass.
Inyo National Forest to the left; Kings Canyon National Park to the right.

DH admires the view of "the other side": Kearsarge Pinnacles and Kearsarge Lakes. Amazing!

ANF Reopened Areas

2010-06-14T16:55:00.000-07:00

Hiking in Our "Backyard" Available Again

I've been working on another trail report about climbing Mt. Islip that will appear BELOW this post when I complete it. In the meanwhile, as you can tell by my recent post(s), the USFS has reopened certain parts of the Angeles National Forest (after the devastating and deadly Station Fire last year) for the summer.

The map on their website is AWFUL; the resolution is lousy to the point of making the map worthless to us hikers. I thought I'd post this map that appeared in the local newspaper so you can better see what is open.

The written orders show the closure boundary is the north side of 3N17, so I'm sure that means the Santa Clara Divide Truck Trail will be closed for a lo-o-o-ong time west of the Rosenita Saddle/Mount Hilyer area.
: (
The only thing to the west that has reopened is the Magic Mountain Wilderness Area end of 3N17 near Sand Canyon (Saugus).

Although campgrounds such as Bandido and Chilao are open, the Visitor's Center at Chilao Flats remains closed. And of course, Hwy 2 is only open from Wrightwood to Red Box Road by Mount Wilson; Angeles Forest Highway is only open between Big Tujunga and Sierra Highway.

Still, there are plenty of (unburned) areas we can now access, so I'm sure we will be able to stay busy exploring "our backyard" this summer! We've already been out there having fun since Memorial Day and are planning more adventures. Enjoy!

Click on map to see larger version.

The Angeles National Forest is my "backyard."

FINALLY Bagged Another Summit!

2010-06-06T01:16:00.001-07:00

Saturday, June 5, 2010
National Trails Day

Mt. Islip
8250' elevation
~2.5 mi roundtrip
~1000' gain (avg 15% grade)

This was a very pleasant hike with a grade more gentle than we are accustomed to doing. I woke up with a pulled muscle in my lower back, but I was determined to go so I just slapped on a kidney belt to help support and stabilize the lower back.

DH, my hiking buddy, and the Brown Dirt Cowboy joined me as support crew. We started out on Highway 2 below Windy Gap, followed a use trail up to Windy Gap, then headed over to Mt. Islip. It was our first look at the Crystal Lake Recreational Area since it was ravaged by wildfire several years ago (8?). When we were done summiting, we met up with a recent college graduate hiking the PCT alone and gave her a ride to the Punchbowl to meet her friends. When I find my trail notes, I'll write more!

Hot rock penstemon.

Close up.

The Brown Dirt Cowboy overlooking the San Gabriel River from Highway 2.

Same site (pano stitch); still-snowcapped Mt. Baldy on the left and Mt. Baden-Powell on the right.

Double waterfall along Highway 2.

The shortcut to Windy Gap off Highway 2.

Snow patches, right off the bat.
Good thing my hiking buddy finally got some trekking poles!

Approaching Windy Gap on the use trail from Highway 2.

Our first look at the devastation/restoration in the Crystal Lake area (after a 2002 wildfire).

Windy Gap: The Pacific Crest Trail heading east; Bump 8426' ahead.
You can peak-tag all the way to Baden-Powell from here --- heading UPHILL!

Windy Gap: The Pacific Crest Trail heading west northwest toward Little Jimmy Campground to the right; Mt. Islip trail heading west to the left.

Windy Gap: Time to shuck the packs, take a bite of jerky, and enjoy the breeze before moving on!

Windy Gap: Stark, weathered tree.

Small plants.

Junction #2: looking up the Mt. Islip trail (right) and back toward Windy Gap (left). (Trail to Little Jimmy Springs behind photographer.)

Crystal Lake (zoom). We actually could see all the way to San Gabriel Reservoir!

Overlooking Bear Canyon again, only this time from the east side!

The towers on Mt. Wilson (zoom).

Looking toward the northwest. We climbed to Bump 8214' on Mt. Williamson last Monday.

Mt. Islip's peak: so close and still so far away!

Junction #3: Islip Ridge Trail to the left; Mt. Islip to the right.

The "last little bit"!

Still going...thanks to the extra support for my lower back!

Gotta grab a little bit of shade before we hit the summit...

Our first glimpse of the old cabin as we round the corner to the summit.

I made it! I KNEW I hadn't seen my last summit!

At the summit, looking from the south to the north.

A flutterby was our only company on the summit.

The summit of Mt. Islip.

Second Failed Attempt

2010-05-31T21:36:00.001-07:00

Memorial Day, 2010

Mt. Williamson/Pleasant View Ridge
8214' elevation
~3 mi roundtrip
~1480' elevation change

It's been a tough time, but I am hanging tough right through them. Good days, I actually can accomplish some things. Bad days, I can't even climb the stairs to my bedroom so I sleep on the sofa. But truly, any day I wake up is a good day!

The new chemos are kind of rough; one causes rash that requires me to stay out of the sun (although I have been acclimating, 10 min a day, so that I can tolerate both the sun and the rash to go hiking). Both chemos cause horrible diarrhea, accompanied by cramping and nausea and feeling very ill (like flu symptoms). Some days, I just stay in bed or on the sofa. Yet I am grateful, so very grateful, to have this ammunition to help me conquer the cancer once and for all.

It was one year, one month, and one week ago that I was trying to survive the weekend till I could find out what was wrong with me --- which turned out to be cardiac tampanade. So my hiking buddy and I still joke about our "failed" attempt to climb Mt. Williamson (see blog report here.) So of course I figured if I could survive checking out Mt. Williamson with my heart being crushed and cardiac arrest imminent, I could probably survive climbing it with mets to the meninges and spinal nerve.

I sure don't feel well enough to go climbing mountains, but I'm sure if i go climb mountains, I'll start feeling well. After all, the tumors in my internal auditory canal, on my cerebral nerves and affecting my balance centers, are now ablated. Time to see how those balance centers are improving!

So I made plans with my friends to go check out Mt. Williamson on Memorial Day. By the time Memorial Day arrived, three of us were able to head out and celebrate the re-opening of Highway 2 (at our end): DH; my hiking buddy; and me. Of course, I woke up with out-of-control diarrhea and cramping...just what you want for hiking! I had three Imm*dium in me before 10:30 a.m.

We set out before noon, but of course we just can't resist stopping along the way to take pictures, although we DID try to hold it to the bare minimum (and consoled ourselves by saying we'll come back next weekend to shoot all the wildflowers).

Click on any photograph to see the larger version.

My hiking buddy snaps the lower portion of a waterfall on Highway 2.

Lower waterfall, closeup.

It was wonderful to be driving on the 2 again, seeing all the landmark points like Dawson Saddle and Islip Saddle. Happily, the road is now open all the way to Mt. Wilson, so we should be able to access many of our favorite places this summer (like Buckhorn). Despite the diarrhea, I decided I was going to try hiking the PCT/Williamson trail no matter what, and just would not be hesitant to turn around if necessary. After all, I'm used to persevering through nasty stuff/times.

So we went to the southwest trailhead, where the PCT crosses the road just west of the tunnels (mile marker 62.5). I figured the PCT would feel like a four-lane highway to us, since we often hike "use trails" (deer paths) and cross-country (no paths). I checked the time; 1 p.m. Since most people take 3 hr to do this hike, I figure it will take me between 4 and 6 hr. Still time to complete it before sundown.

Today's trailhead starts on a portion of the Pacific Crest Trail
where it crosses the highway at mile marker 62.5.

Not so bad at the beginning!

Click on the picture to see the trailside tiny purple flowers at my feet.

A different kind of yucca and yucca bloom, not the typical Lord's Candle.
We dubbed this the big throbbing red one. It's a notable landmark.

We hadn't made it any distance to speak of before I noticed that it must've been a really wet season (it was), because the bugs are CRAZY!! I was blowing and waving and twisting and turning, but they would NOT leave me alone. Fortunately, we had our Cutters Outdoor stick with us. I put some on my face and arms and continued on.

Steeper and more rugged now as we round the first main curve.

Coming up on the first major ridge.

The first ridge above the highway. DH is looking southeast into Bear Canyon
(with Highway 2 to Islip Saddle on the left).

Looking southward into Bear Canyon.

By the time we crested the first little ridge that overlooks the highway to the south of us, I had had ENOUGH of the bugs! Since the Cutters was on my face, they resorted to flying in my mouth, nose, and ears. AAARRRRGHH!!!! I can't stand that! I grabbed my bandanna from atop my head and had DH soak it down with the bottled water, then tied it around my face cowboy-style. Finally, I could breathe without the extra protein (bugs) in my diet or inhaling them up my nose!

My hiking buddy turned around and saw what I had done and started cracking up at my ridiculous appearance. I just happened to be using a bandanna she had given me; one of tye-dye colors and peace and love and heart symbols. She immediately dubbed me "The Peace and Love Bandit." Well, at least my oncologist can't say I'm not covered up!!!

The Peace and Love Bandit

The trail grew less pine needles and more rock after the first ridge as we cut our way northeast. In the distance we could hear the falling water -- the headwaters of Littlerock Creek! Soon we could catch a small glimpse of it downslope from us, but no one wanted to ski down on the rocks (and then have to climb back up) to see it. So after 30+ yr of swimming in Littlerock Creek and Dam, I can finally say I have seen the headwaters on Mt. Williamson.

Normal Southern California mountain trail...wear good boots and hiking socks!

Care to slide down and see the headwaters of Littlerock Creek?

I'd finally solved the bugs-in-my-facial-orifices problem and was happy. So of course, that's when the diarrhea cramping starts. Lord have mercy! There is NO PLACE to get off the trail here; the trail is on the side of cliffs. Go away, diarrhea---I just refuse to cooperate with this. I ignore it. You know the drill by now --- just keep going! I settled into plodding trail as it got steeper, narrower, and with more exposure. The snowy spots made it fun, too. Good thing my other brother made me get trekking poles!

Eventually we found ourselves at the junction of the PCT and the use trail leading up to the top of Pleasant View Ridge and Mt. Williamson. We took a break to eat a snack and refuel; the elevation was ~8050', so we were into The Zone.

Snow still covers short stretches of the trail.

Junction of the PCT and the Mt. Williamson trail. This marker shows the PCT heading west.

This marker shows the PCT/Silver Moccasin trail coming from Islip Saddle meeting the Mt. Williamson trail.

SSE view panostitch from PCT/Mt. Williamson trail junction.

Looking down Bear Canyon to the south.

In real life, it feels like we're sitting on the edge of the world!

WSW view from our snack spot just north of the trails' junction.

Now you might have noticed our little hikes always involve some little adventure -- either my hiking buddy falls in a creek or my dog falls off a cliff or the bear can falls off and rolls down the mountain or or or. "It's always something," and today of course is no exception. We're sitting there pleasantly eating our snack when my hiking buddy's pack decides to go tumbling down the mountain.

We watched until it came to a rest in some manzanita bushes way below us. "Isn't that the trail just below the manzanita?" Sure enough. DH was kind enough to slide down to the manzanita and get the pack, and then smart enough to hike the trail back up to where we sat.

Since we were so close to the top, we didn't tarry long; just enough to get a piece of jerky and a couple fruit slices into each of us. Then we set out to climb "the last little bit."

You experienced hikers are laughing, aren't you? 'Cause you know the last little bit is always deceptive and actually goes on and on and on. Which is exactly what this last little bit did. We got to the top of what you see below only to find it still continued up and up to the right. But finally, finally, we were standing atop the final ridge and could see in all four directions.

Just climb this last hump (which continues to the right, unseen in this photograph)
and we'll be atop Pleasant View Ridge and Mt. Williamson!

Of course, that "last little bit" keeps going, and going, and going...

After looking at it from my windows for 21 yrs,
I am finally standing on Pleasant View Ridge/Mt. Williamson!

View to the southwest.

View to the northeast.

And yet, believe it or not, we were still not at the "summit" of either Pleasant View Ridge or Mt. Williamson! There are many "bumps" on both geological features. A path to our right (eastward) took us to the bump called 8214. But the Hundred Peaks Section List counts bump 8244 as the official Mt. Williamson summit.

The view from the top (but not the official HPS summit). Elevation 8214'.

We started out on the use trail along the ridge to bump 8244', but all our feets were hurting and exhausted and this was really tough climbing here. Are we sure we want to go on? We checked the time -- it was almost 4 pm. We have no choice but to turn back, as that is our cut-off time for starting down. We walked back to where the trail deposited us on the ridge and had a little break to admire the view, take pictures, and drink our celebratory summit beverage.

Dust devils kicking up on the east end of El Mirage Dry Lakebed.

Sex on the Beach on a mountaintop!

The wind was really whipping on top the ridge, and the hour was late, so we did not dally long. It was probably 4:15 when we started down.

Okay, time to head back down!

Go slow!

Don't fall!

Another snow patch to cross.

Just a little exposure, eh?

Finally the highway comes into view!

Once again I just settled into plodding trail, and I don't think we took any breaks of any note on the way down. I do remember resting for a moment to listen to the headwaters of Littlerock Creek, but the bugs were obnoxious again and I couldn't stand long. Before too long we could see the red throbbing one, and we knew Big Blue lay just beyond it. We decided to immediately jump into Big Blue and drive straight to the bathrooms at Islip Saddle; we could deal with our gear etc there. I remembered to check the time as we piled in the van; it was 5:45. Roughly 1.5 hr to come back down the mountain.

There's little white flowers tucked into the red stalk, just waiting to pop!

Big Blue awaits!

And I must say, as an experienced outdoorsman, the bathrooms at Islip Saddle were simply the WORST-smelling I have ever been in. Ewww! Doesn't anyone pump them? Don't people from the L. A. area know to CLOSE THE LID in an outhouse? I decided I'd survived holding it long enough, I'd just go on holding it till I got home.

One year, one month, and one week ago I was out on this trail with cardiac tampanade,
cardiac arrest imminent. I must have some really good angels on my side!

We all limped back into the van and peeled off our hiking boots. It felt so GOOD! And then we popped open our celebratory beverage to commemorate our successful hike.

As we were driving home, we were treated to the coolest experience. A doe ran right in front of us and then leaped the guardrail and went down the cliffs in the most extraordinary exhibition of grace. Wow!

But you know what the very best part was? Climbing into the hot tub when I got home! AAAHHHHHH!!!

A successful summit-and-return celebratory beverage in the parking lot at Islip Saddle.

Cyberknife

2010-05-18T18:23:00.000-07:00

Praise the Lord and Pass the Ammunition!

It's been an interesting and even scary time lately. Fighting metastasis in my head, I feel like I've been riding rollercoasters nonstop for a couple of months. I walk like a drunken sailor, due to the balance centers being affected; and the cerebral nerves have been impaired, causing me to lose my hearing and my facial muscles on the left side.

I was also starting to feel overwhelmed once again by the cancer, especially by the diagnosis of leptomeningeal carcinomatosis. I begged the doctors to give me more ammo to fight with NOW, as I didn't want to wait on trying the reservoir with chemotherapy in the brain. So I started on a new targeted chemotherapy drug on May 1 that has the ability to cross the blood-brain barrier. So far, we believe the drug is working, as indicated by the side effects I've had.

I also opted to use a process called "Cyberknife" to rid myself of two tumors in my head, one in the Internal Auditory Canal (on the cerebral nerves) and one in the soft tissue between the IAC and the brain. My doctors had heard of Gamma Knife, but the specialists to whom they sent me were the ones who told us about Cyberknife.

Unlike Gamma Knife, Cyberknife can do other areas besides the head, including the spine, lungs, and prostate. That's really good news, because I have a tumor on the spinal nerve at L2 that is causing the numbness in my legs and feet (and formerly was causing the sciatica pain; boy, the acupuncturist did a GREAT job of knocking that pain down to nothing!).

Cyerknife isn't really surgery; as a matter of fact, it SPARES one having brain surgery (or other invasive surgeries)! Instead of cutting into me to remove the tumors, very high doses of radiation are targeted specifically into the tumor(s), ablating the cancerous cells and tissues. I just lie on a table, while a machine reminiscent of Wall-E moves around me, delivering unseen and unfelt beams to the tumors' locations.

It's so Star Trek --- just lie on the table while the macine moves all around, blasting
tumors with beams of high-dose radiation and eliminating the need for brain microsurgery!

Furthermore, Gamma Knife requires a metal framework to be screwed into the head, while Cyberknife was completely noninvasive. That was very appealing to me. To hold my head still, they molded a mesh mask to my face that was clamped to the table for each of the actual Cyberknife sessions. The two tumors in my head were ablated over the course of three 1-hr sessions.

A mesh mask molded to my face is used to keep my head still during sessions.

The ablated tumors will be dissolved over the next 2 to 4 weeks, and I am hopeful I will have complete restoration (although it isn't predicted). Meanwhile, I am groggy from the Benedryl I take (knockout drops) to combat the rash caused by the targeted chemotherapy. I sleep a bit more than I like, and I greatly miss driving.

So I just enjoy the simple things in my life each day: the beautiful yellow birds that wake me up each morning (and tease the cat); all the wildflowers constantly emerging as others fade; my family.

I might have to take up bird watching as my newest hobby!

Of course, incorrigible that I am, I did sneak out one day to drive (with parental supervision). I took my mom on a little picnic to see the last of the wildflower fields. So even though life is kinda hard right now, we're still taking time to enjoy all its beauty.

Fading field of coreopsis.

And of course, I am NOT giving up! Thank God for more ammunition! I'm still going!

Grim News

2010-04-30T18:36:00.000-07:00

It's Always Something

All these years later, I still miss Gilda Radner. I loved her characters, especially Roseanne Rosanadana, who would wryly comment that "It's always something...if it's not one thing, it's another!"

Fighting fourth-stage cancer can be like that. On March 20, I hiked 300' straight up the side of a mountain -- with my hiking partners wearing out just as quickly as me (if not sooner). I started working on the post about it, but was tied up with a special project that kept me from finishing it.

Then, on April 6, I got home from my weekly infusion to discover that the left half of my face was frozen---the muscles had stopped working. I now had an Elvis sneer instead of a smile.

My oncologist, suspicious on January 12 when I had the hearing loss in my left ear, was clear: cancer has probably metastasized to the base of my brain. He wasted no time, and by April 9 we had an answer for the symptoms: a tumour right on the cerebral nerves plus another in the soft tissue between the brain and the ear. Worse yet, there are cancer cells/lesions on the spinal nerve and on the leptomeninges.

I, of course, refuse to give up fighting. My oncologist sent me to the best specialists in the nation, and we have agreed upon a plan to beat the cancer back into remission once and for all time. Tomorrow, I will start a new drug. Monday, I will have a form of concentrated radiation to the brain to ablate the tumours there; it's called Cyberknife and you can read about it on the internet.

So, as I stay busy beating those damned spots out, I've gone ahead and posted the pictures so you can at least see them. I will finish the text (and photograph labels) as I can.

You can find the post for the March 20th hike right below.

The second day of the Sierra trip (unfinished text and labels) is here:

http://hikingforhope.blogspot.com/2009/10/2009-sierra-trip-day-two.html

And you can BET that I am STILL out there hiking! I've been on little trips since I was diagnosed with this new metastasis, but my balance centers are affected enough that I try to keep it somewhat mellow!

The First Day of Spring

2010-03-22T18:40:00.000-07:00

Saturday, March 20

Tehachapi Mountain Park
6000' to 6300' (cross-country)

Spring is finally here! I drove out to Vincent Gap before the weekend arrived, but Highway 2 is still closed at that point and snow is right down to the trailhead of Baden-Powell. Eager to celebrate the changing season, I turned my sights on the Tehachapis. Much of the snow has melted off; perhaps we could do some hiking there.

To be continued...

Results from the ENT

2010-03-21T19:09:00.000-07:00

I returned to the ENT for the results of my hearing tests and CT scan. I was pleased to have confirmed that there are absolutely no signs of cancer; that is not the cause of the hearing loss.

And unfortunately, the hearing loss in the one ear is severe to profound. Turning up the volume (via hearing aids) does not help, either. I am only able to recognize 6 of every 10 words because of the word recognition loss. So the initial diagnosis of "sudden sensorineural hearing loss" (sudden deafness, in the olden days) still stands.

However, it is the only diagnosis that has the possibility for the deafness to reverse! Thankfully! The ENT said there is a 30% chance my hearing will be restored, a 30% chance it will improve, and a 30% chance it will stay just like it is -- deaf and screaming, echoing and feeding back. Okay, that sounds to me like I have a 60% chance that it's gonna get better!

The ENT's best guess as to what happened that day during the infusion was NOT a drug reaction, but rather a small blood clot that broke off and went through. Given my symptoms that day, it's possible that's what happened. So glad I'm still here!

The ENT (who is from the Middle East) recommended that I pray, which I have been doing, and take lipoflavanoids. I found the lipoflavanoid box in the ear/eye section of a national-chain pharmacy. I also grabbed a supplement to reduce the tinnitus ringing from our local health food store. And I continue to pray, knowing my hearing will be restored as soon as possible.

Meanwhile, I am noticeably hearing impaired and feeling somewhat frustrated that I have to constantly say, "What?" Or misunderstand, thinking I've heard correctly, frustrating those with whom I'm conversing. Aargh!!!!

So since I'm still miserable from the waist down with sciatica and neuropathy PLUS now have this tinnitus and deafness, I decided it is time to fork the bucks over to pay for acupuncture (out-of-pocket since insurance doesn't cover it). Not any acupuncturist will do -- experience has taught me to seek out Oriental MDs who are also herbalists and licensed acupuncturists. I found one locally who also has a PhD and 40 yr of experience!

After the very first session, I had some relief and could finally feel my feet some. I was able to cut down on pain medication. But 36 hr later, I was hurting again and needed more pain medication. The Oriental MD told me he thinks my mattress is making the sciatica worse. I think he's right!

During the second session, a mere two minutes after the needles were in me, I could feel my feet get warm and have sensation return. Oriental medicine is so different than Western medicine, but it DOES work!

The OMD thinks he can knock the pain down 80 to 100 percent in 5 or 6 sessions over 2 or 3 weeks. I've been so miserable, I think it's money well-spent. Plus he also treats the tinnitus! So I'll keep you posted on how it goes. I think I'm gonna keep him on my team of doctors and just pay out-of-pocket because my health is worth it.

Burkhart Trail, Punchbowl End

2010-03-04T20:10:00.000-08:00

Sunday, February 28, 2010

Walked a mile out and back to try to work out the sciatica. On the road to recovery from it, but still can't sit long enough to write. Text to be added later.

Looking from the start of the Burkhart Trail down on the end of the Punchbowl Loop.

Yucca.

Rogers Dry Lakebed (with rainwater on portions) and Edwards AFB (arrow) in the distance.

Looking back at the Punchbowl Creek canyon.

A dense Manzanita grove provides us shade.

Manzanita bloom buds.

Wanna slide down that slope, Johnny K?

Looking back at the 'bowl.

That bald patch (arrow) is a 10-acre ranch.

Mt. Williamson (from the north).

Made it to the junction!

Seems so strange to see the BT (making a hairpin turn here) going AWAY from the mountains at this point!

Soon, but not today!

A pleasant walk downhill going back!

Ruth. She's a barn owl friend of mine.

Scorpion. These type are not deadly, unless you're allergic to them.

California brown tarantula.

I enjoy my Punchbowl friends! So I hope the misguided person who stole the desert tortoise brings him back HOME right away!

Hanging Tough

2010-02-26T12:18:00.001-08:00

Say What?

I have now been suffering from disabling sciatica and nerve pain since January 2nd; it's presently requiring 10 mg of oxycodone just for me to be able to function/ignore the pain. But the most annoying thing? I had a drug reaction on January 12, and it caused sudden deafness in one ear.

The ENT dr can tell there is something behind the ear drum -- perhaps every blood vessel in the ear burst, or perhaps there is a growth. I am thankful I just had great imaging results, so we have ruled out tumors in the brain causing the hearing loss or cancer causing the sciatica, neuropathy, and numbness I'm experiencing from the pelvis down.

This week, I did an extensive hearing test. It took 45 minutes and was conducted by a computer! The first part, all I had to do was sit there with plugs vacuum-tight in both ears while the machine did things to measure air conduction and so forth.

The second part was the part we're all accustomed to doing: pressing the button at the sound of the pulsing tone. I did well on my normal ear; it took me a few seconds to realize I was "hearing" the tone in my problematic ear via the bones in my skull and the change in the tinnitus. So I think my ear is still structurally working and I am hopeful all will be fine in the long run.

The third part was speech recognition. I aced it with my normal ear; I flunked it with the problematic ear. : (
At this point, I am unable to use a telephone with that ear -- speech is not recognizable to my ear enough for me to even begin to GUESS what's being said. : (

So it has been a tough couple of months for me, but I am still hanging tough right back. Yesterday I went for the CT scan of the area. I will get the results of the hearing tests and the CT scan when I see the doctor again in 2 weeks. I think it's all just nuisance stuff, and I am really really looking forward to when it's over and done!

Still Going and Going and Going!

2010-02-15T23:56:00.001-08:00

Countup Clocks, Love Countups at WishAFriend.com

Wreckin' that curve!

What Was I Thinking?

2010-02-01T22:16:00.000-08:00

Devil's Punchbowl

4,740' elevation

Burkhart Trail

Saturday, January 23

Fail

The sciatica and neuropathy I've been suffering in my legs has not improved; so I thought I'd take a little walk on the Burkhart Trail, from the Devil's Punchbowl end, to see if I could work it out. What was I thinking? We arrived to find snow at that elevation and the parking lot an utter MESS. The wild animals were out of control (and by wild animals I mean the homo sapiens). I stayed only long enough to take a couple shots from the vista and help push a friend out of the parking lot. Poor Ranger Boy! What an awful day with the human side of the job. We made our escape and figured we'd come back another time!

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

From the vista point.

Monday, January 25

A Short Walk
[200' (up and back down) elevation change]

I'm in too much pain; I GOTTA do SOMETHING! So late Monday afternoon, we headed back up to the Punchbowl. This time, the place was blissfully deserted but for the rangers and three people.

DS and I took a little walk up the Burkhart trail, but not terribly far. The altimeter showed we had gained 200 ft elevation before we turned around to beat the dark. The manzanitas up there were HUGE and fairly lush.

Today's vista shot.

And if you see my reflection in the snow-covered hills...

Burkhart Trail signpost in the snow.

I think the photos on this blog have probably established
I really like the color and texture of manzanita bark!

Looking back at Punchbowl Creek canyon rocks.

Big manzanitas up here!

It was sunset as we were leaving; I snapped this shot from a road west of the Punchbowl looking back southEAST at the setting sun reflected in the snow on the surrounding mountain peaks.

Life is still good, pain and all...

Our Local Superbowl

2010-01-09T19:13:00.000-08:00

Friday, January 8, 2010

Devil's Punchbowl

4,740' elevation

1 mi loop trail [300' (down and back up) elevation change]

Do you believe it's possible to love a place? If so, you've probably figured out by now that this is one place I love.

We headed up here on a Friday just to stretch my legs; I am still hurting ever since our drive/hike to the tricklefall. I don't know if I've pinched a nerve or am just experiencing more nuisance side effects, but I have a great deal of numbness, pins and needles, and other neuropathy effects in my leg and foot. And not uniformly or symmetrically, either!

This place never loses its thing for me; today we went up the creek to the base of the Witch and the Devil. Brachial nerve complex pain in my chest struck me at the bottom, so I rested by the creek while the boys climbed the rocks.

This place provides such excellent training. One trip I would like to do is the equivalent of hiking the loop trail 5 times a day for about 17 days in a row! Time to start building up!

From the vista point.

Southern rocks.

Starting down the trail.

The round rock (trail above).

From the trail.

Our summertime waterslide.

Manzanita bush.

Creekbed below the Witch and the Devil.

My guys on the ledge above me.

OK, back to the trail.

2010 Begins!

2010-01-04T21:30:00.000-08:00

Saturday, January 2, 2010

Going For A Little Drive
Total time ~6 hr
170 mi total driving
~0.5 mi hiking/climbing

I have a suspicion that if I invited you to "go for a little drive to see the area" while my friends were standing behind me, they would give you a look of alarm and shake their heads violently while mouthing "No!" to you with great exaggeration. I've probably earned this reputation; riding with me is not for the faint-hearted. When I say we've driven Big Blue all over God's creation, I'm not kidding...we often see the dumbfounded looks on 4-wheel-drivers wondering how in the blazes we got where we've met--in a Chevy van! (They should see where I used to take my little Japanese cars!)

Unfortunately, there was no such Greek chorus to warn my German friend when she emailed on New Year's day, asking if I wanted to do anything Saturday. I said I wanted to go for a little drive, to do some recon on a trailhead. Now, this is the same friend that survived riding with us over the heights of the 3N17 -- the same road off which the firefighters killed in the Station fire last August plummeted 800 feet. I still remember the first time I explored 3N17 -- alone and without cell service. I wondered how hairy it would get while I was driving it; but once I did it, I've been back without worry (although keeping a tight grip on the wheel).

Well, this "highway" made the 3N17 seem a bit tame. Oh, we were still dealing with a narrow dirt road at an incredible angle climbing high with no guard rails and massive exposure in the guise of views, just like the 3N17. But for starters, we ignored the "Road Closed" sign on this one (it just looked wrong).

Click on each photograph to see larger version.

The "highway" immediately starts climbing once it becomes dirt.

And unlike the 3N17, THIS road was unmaintained and had HUGE ruts from runoff water in it. It made for a real white-knuckle trip as we teetered this way and that, always inching forward no matter what since we lack front- or four-wheel drive and may not be able to start again if we stop.

We had barely gone one mile when we found a place to pull over and take a break and decide if we really should continue on this "road." A vandalized platform provided us with an excellent view of the dam below us, the canyon east of us, and the mountain range to the southwest.

Capturing the view.

Panostitch of the view...it really doesn't do it justice, but you can get an idea!

We stretched our legs and shot the pics above, then decided we would continue on and see if we could make it to our planned destination of the trailhead. I'll say this; it was an interesting drive! We were never sure if we would slide into the ditch, into the rock face, or off the cliff; or just simply get stuck in the middle of nowhere with no way to call for help (and many miles to hike out). We could feel the tires slipping and sliding as we climbed up and up and up, getting deeper and deeper into forest.

So of course we were grinning the whole time!

It took us an hour and 45 minutes to reach the trailhead; we found it without a single hitch as far as directions go (if you don't mind the road conditions!). We parked and started down the trail, seeing if it would be suitable for mountain biking, hiking, or climbing. We rounded a hill and dropped down into a canyon. Clearly not suitable for the mountain bikes. We could see a long loop around the end of the canyon and the trail climbing on the opposite side above us. This is a trail we plan to try another day; and no matter the temptation, not enough daylight was left to take it on today. So we made the decision to turn back there, even though we had barely started hiking, because all we'd really planned to do anyway was go for a little drive.

As we headed back, we could hear running water that we had heard earlier but never saw before the sound faded. I asked my friend if she wanted to explore the source of the sound. Of course, she was game. The canyon was too steep to scramble down there, so we went back to where the trail crosses a currently dry runoff descending into the canyon.

We climbed down the rocks into the canyon and saw one little standing pool of water just above where the runoff bed we were following intersects with a larger creekbed. The sound was louder here; clearly it was falling water since there wasn't enough water to be a rushing creek.

We climbed up the boulders of the mostly dry creekbed to where a waterfall--or a tricklefall, as my friend called it--descends through a crack in a huge slab rock wall and ends in a little sandy pool.

What a lot of noise from a trickle of water!

Scissors might not, but water conquers rock!

What a perfect resting spot! I bet it's a great little swimming hole in the summertime, when the creeks are rushing with melted snow. We dropped our "gear" and sat a spell, enjoying the sound and snapping photographs.

Moss was on some of the rocks around us. I touched it; it didn't even feel damp. It was so soft, and thick; like a very spongy velvet. Beautiful!

Spongy, velvety, bright green moss in the surrounding rocks.

As I sat snapping my pictures, my eye kept returning to a ledge across from us. "Hey, why don't you get up there and I'll take your picture there?" I told my friend. "Just don't fall in." We both grinned. Not like that's ever happened, huh!

A nice little ledge across from me.

She navigated the rocks successfully and tucked her long limbs into the hidey-hole. I snapped a few pictures with her new camera. "Your turn!" she told me. Yeah, turnabout is fair play. Let's see if I can climb up there without falling in!

Well, I did! But at one point, I had to lunge and pulled a muscle in the top of my leg. OUCH! My muscles are so tight.

By now, the sun was disappearing behind the moutains, taking with it our warmth against the chilly winter air. And since we had really only planned on going for a little drive, we figured it was time to get started back. Of course, now we have to climb UP that steep runoff bed!

Bidding farewell to our little tricklefall and pool.

Water conquers rock!

After taking our farewell shots, we climbed back down the streambed. I passed one rock that had green mineral in it; it was soft like soapstone but bright like actonite. Pretty stuff.

We crossed by the still pool and headed up the runoff bank. Wow, too bad I didn't bring my poles! I was grabbing onto every rock and plant I could find to pull myself up the bank. It was quite a steep climb that worked up a sweat and left me gasping to catch my breath. My poor legs complained how tight the muscles were, forcing me to stop every 10 feet or so as we slowly made our way out of the canyon.

Once we reached the trail, it was a piece of cake back to the trailhead; and Big Blue was waiting for us, undisturbed. Since we had really only planned on going for a little drive, we tried to make calls. Still no cell service. We decided to take the pavement home, even though it was a longer route -- best to not risk getting stuck on that dirt highway in the cold night air!

So now we were winding through the mountains, with the sinking sun constantly blinding us as we worked our way to lower elevations on the narrow, hairpin-curved road. It's just always an adventure, even doing something as simple as going for a drive!

By now, we were starving. Since we were only going for a little drive, we hadn't packed any trail food beyond some nuts and dried fruit. We ate those as we headed toward home, looking for a place to stop and eat along the way. There really wasn't any place! We finally stopped at Mountain Top cafe, where I enjoyed some excellent fried chicken. It was dark by the time we left there; but it only added 45 minutes to our day and at least dinner was dealt with! When we got home, we collapsed.

The next day, when I awoke, I couldn't figure out why I hurt so much and could barely walk. Then I remembered all those rocks and that one particular lunge. Even as I write this, I am still hurting! Guess I'm getting old. But then, that's a good thing!

A Very Merry Christmas

2009-12-21T15:29:00.000-08:00

Mt. Baldy covered in snow.

Merry Christmas, everyone!

My gift arrived a little early this year...the results of the most recent imaging show NO SIGNS OF ACTIVE DISEASE!!!!

So I'm just gonna go ahead and consider myself to be cured of this little cell replication problem. Hakuna matata!

In Search of Fall Colors

2009-12-05T12:01:00.000-08:00

Autumn sneaks by here in So Cal---the skies remain sunny and blue, and temperatures still reach into the 70s and 80s, even at Thanksgiving. And with a dearth of deciduous trees here in the desert, very little gives away the season. Only the colored ribbon of Big Rock Creek wash belies this spring-like weather.

Thanksgiving weekend resulted in the first good snowfall of the year in the local mountains, just in time for the roads to open November 30. With a school fundraiser and Christmas on the horizon, a venture to Valyermo for mistletoe was in order.

The newly snow-covered San Gabriels made a beautiful backdrop to the wash of fall colors that give away where water runs off the hills to drain in the desert sand. We stopped along the road still west of Big Rock Creek wash, where the deciduous trees were a bright yellow and dry rusty red. Even the cattail reeds were beginning to bronze and rust.

Mts. Baden-Powell, Burnham, and Lewis.
"Been There; Climbed Those!"

West of Big Pines Hwy.

As I walked along the road, snapping pictures of the few autumn leaves we desert dwellers can actually see without driving long distances, DH climbed a few roadside trees. Among dead branches hung huge clumps of parasitic mistletoe, of which DH relieved the tree. DS gathered up the clumps in a trash bag. In a few minutes time, I had some pictures and they had enough mistletoe for the fundraiser. Just one of the reasons why we love living here!

Looking toward Mt. Williamson.

My Blue Autumn

2009-11-22T20:27:00.000-08:00

I'm still here; still going. But I haven't felt much like writing; I am still dealing with the recent deaths of people I love. I did get out of the house one Saturday and took a drive to see what roads are open. We were able to go up Big Pines Highway and out Highway 2 as far as Vincent Gap before we hit the road closures still in place after the Station fire. The rangers at Grassy Hollow told us the roads would be opening November 30.

East Blue Ridge's dirt road is now closed until the end of ski season. Mountain High already had at least one slope running. We stopped at Jackson Lake, now severely low at the end of the season, and ate our picnic lunch inside the van as it was less than 40 deg outside. A stop at my favorite crack seed shop outside the islands, and then we were home.

I am really jonesing to go hiking again; hopefully the forest will open when the roads do on November 30. But all the back roads, like 3N17, close from November until May. So we may have to find somewhere else to play for awhile!

Skiers at Mountain High resort.

Jackson Lake.

Where I'm standing used to be underwater.
Now the cattail cleanup begins!

Mallards.

Devil's Horn moon.

My picnic view (from inside the van).

Still Going

2009-11-09T22:23:00.000-08:00

I've been working on the post for the second day of the Sierra backpack, but unfortunately DS decided to share a cold with me. Then, I received news that a close family member had tragically passed away. So working on the trail report ground to a sudden halt as my life became surreal as I tried to absorb the shock.

This has been a bad year for losing people for me, so I feel doubly blessed to still be here myself, still raising my family. While I was on the road traveling home from the funeral---a long slur of time, miles, and decades---I was treated to the beautiful sight of Mt. Shasta in the morning sunlight.

It reminded me that I'd like to hike it; maybe not to the summit, but at least see how far I can make it before ice and snow turn me back. I'll do SOME ice and snow, as on our Mt. Whitney trip; but I just can't do the real stuff anymore.

Life is still good, and I am still blessed. May God bless my family and friends.

Take the highway.