Another Tour

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

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

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 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

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

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

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!

: (

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!