Friday, April 22, 2011

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.

Friday, April 15, 2011


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!

Saturday, April 9, 2011

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!

Sunday, April 3, 2011

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!