Where the Spots Show

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

1. L cisternal 5th cranial nerve (affects facial nerves)
2. 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:

1. ~8th rib R lateral
2. lower thoracic spine
3. 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

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?

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?

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

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

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

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

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!!!

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

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.