Tuesday, September 18, 2007

September 17, 2007

Wow! Has it actually been 3days since I've pestered you?! Whew...worlds can blow apart in 3 days... I suppose I have some back-tracking to do. Sit back, get comfy - this may take a while.

First of all, when last we met, I was giddy as a 6 year old on Christmas morning. We were packing like crazed chickens, trying to get to a cabin to meet the owner at the correct time. The cabin was the brainchild and heart wish of an amazing man, whom sadly - we will never have the opportunity to thank. Larry Joseph lost his battle with colon cancer nearly three years ago...and the world lost a living angel. After facing cancer himself, Larry couldn't stop thinking of children with cancer - and how their families cope with the stress. He dreamed up Chapel Hill House. And in the few short years he managed to fight to stay here - he made his dream a reality. Chapel Hill House is a restored 1835 log cabin that sits on 70 acres of prairies and woods. It welcomes pediatric cancer families for a weekend of family bonding and soul-filling respite. Larry's wife, Annie, welcomes you to this magical retreat with all the love of a grandmother, and the understanding of your best friend. I will write at length about our stay at some other time - but for now, you just needed to know where we were headed last Friday. (http://chapelhillhouse.org/Chapel%20Hill%20House/Main.html)

What I didn't know as I typed my quick we're-off-to-have-fun note to you, is that within minutes, I would find a piece of paper that could potentially change our world, again. As I ransacked a plastic bag from Thursday's hospital visit, I found a lab print-out from Avalon's procedure. When I had asked the nurse to print lab results for me, I had really only been looking for white blood cell counts - and hadn't paid any attention to other numbers. Friday, as I unfolded the lab sheets, I realized there were three papers, instead of the customary two. The third paper had the beginning of the lab results for Avalon's Cerebral Spinal Fluid (CSF). While most results were "Pending" - a few were already in. Avalon's CSF contained nearly twice the highest "normal" amount of protein. Blood values are given in ranges. CSF protein content is considered "normal" if its between 15-45. Avalon's was 89.

Once I saw the results, I ran upstairs, booted up the computer and did quick searches for elevated protein in CSF. The options for explanations were not pleasant. I put a call in to our nurse practitioner, and asked her to please phone us and, in effect, "pat me on the hand" and tell me I was a worry wart. No dice. She did call back - but she said she was also concerned. We settled on the plan to have the NP talk to our attending oncologist on Monday, and I would consult with Avalon's neuro-opthalmologist at her appointment on Monday.

To say I headed off for my weekend of "relaxation" in anything but a "relaxed" mood, would rather be like saying the Titanic got a bit wet. I was a certifiable basket case. Poor Annie, as she greeted us and walked around the grounds teaching us about her beautiful gift to cancer families, she made the collasal mistake of asking how Avalon is doing. Blip - flood gates opened. I managed to rein it in, and blame it on the ragweed - but I nearly burst several gaskets trying to pretend everything was OK.

That's the thing about Chapel Hill House, though. As the weekend wore on, the house really did work its magic on me. I was able to let go of the panic, and find my resolve again. There really was a deep, mystifying presence there. I left ready to fight - not fighting to breathe.

I do, however, need to admit a few shortcomings. In my last post, I shared my "Declaration of War". I must now admit, that in every war...there are a few casualties. I took a pretty major hit at Chapel Hill.... While the Battle of the Bulge is far from over - you might say I "lost a hill" on the Hill. Or rather, I gained a bit more to battle with. Shockingly, Friday morning, the scales tipped at a whopping -13 pounds! How's that for amazing? Don't be too impressed...this morning showed the full extent of my battle fatigue...back to only -10. Apparantly, my previous rantings about stress were dead on - it does, indeed, tend to affect my "bottom" line.

Odd thing is, I didn't really overeat at Chapel Hill. I just made poor food choices. I know no one probably believes me that I've lost so much weight so quickly by simply avoiding the foods I'm allergic too. I was beginning to doubt myself. I even questioned my hubby about potentially sabotaging the scales to "boost" my ego! Nope. Chapel Hill was the proof in the pudding. I gained those 3 pounds in 3 days, by eating (you won't believe this) 4 sugar cookies, 2 pieces of sourdough bread, 1 piece of seeded rye bread, 1 hot dog bun, and 3 s'mores. How insane is that?! The rest of what I ate: tacos, eggs for breakfast, etc - were the same things I'd been eating at home, while the weight was falling off. But my body hates wheat and sugar so much - that those few indulgences grabbed calories like a sailor grabs whiskey - and held on for dear life.

Am I disappointed about the pounds? Well, duh - it stinks to see the numbers go higher! Am I going to beat myself with a wet noodle over it? Heck no! First of all, noodles have wheat and my ridiculous body would figure out how to grab calories from the lashing. Second of all, I'm human! I managed to control myself and not go hog-wild - and for that, I'm proud. What I wanted to do was hole up in a corner, suck down all the chocolate in the 'fridge and every homemade cookie in the container, and sugar myself into a stress-free-stupor. What I did was enjoy a few decadent things and allow myself only a small amount of time to worry - while finding that special place of pure joy being with my family.

OK, so a few cookies isn't nirvana to most people. And a few extra pounds to lose (AGAIN) is a bit of a pain. The truth is, I think the weekend taught me everything Larry had envisioned it could. It taught me to enjoy every second of life, and learn to accept the bad as well as the good - for they both mean Life.

In the next post for Sept 17 - I'll finish filling in some cracks in the story...

Hang in there, I'm mentally and bloggerly getting caught up...

Hugs!
Crazy Cancer Mom

No comments: