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!

A Pioneer's Experience

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

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

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

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

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!