back                                                                                                                         Updated Sept. 5, 2004

Sunday
Sept. 5

Medical Update

Welcome back to the latest chapter in the continuing saga of Grok, the tumor that won't quit. When last we wrote, Joe reported form the hospital right after I had a Ventricular/Perirtoneal (V/P) shunt placed in my head and belly. Ouch.  I left the hospital on Saturday around noon and actually felt pretty well all day Saturday. I noticed right away the improved balance and less dizziness that the shunt already provided by reducing the hydrocephalus in my brain.

However, Sunday was another story. What a miserable day that was! I had every symptom imaginable: I couldn't walk or see straight, was terribly dizzy and unbalanced, had multiple choking spasms, headaches, and in general felt like I'd been mugged. . It felt like there had never been a shunt put in to alleviate the pressure. Both the head incision and especially the belly incision were really sore and I could even feel the whole length of the tube that ran in between.
 

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The primary incision site


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The valve is under the bump.  You can just barely see the  route of the tubing behind her ear. The small incision line is where the very long needle was inserted all the way to her belly.


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Here you can see the shunt tubing down the side
of Val's neck to her collar bone.

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The incision where the end of the tubing was placed into her abdominal cavity. Apparently the surgeon left the closing stitches to a beginner.

 


I'd been warned that I would experience various symptoms for several days following surgery, so I just had to bear with it and ride it out, but oh my, what a long day Sunday was! I basically could do nothing, go nowhere; I could only hang around and heal up. So that's what I did. For someone as active as I tend to be, that was a real lesson in patience!

In the meantime, I had various symptoms that were NOT related to the hydrocephalus that the shunt corrected. I realized this when I spoke with the hospital's billing department about this next bill, and the woman there suggested that I apply for Social Security Disability (SSD) as a way to help defray the costs. I had to send my neurosurgeon a list of my remaining symptoms that were what I was basically left with after surgery, radiation and a shunt, so he could write a letter on my behalf for the SSD application. Following is that list of where I'm at right now:

Current persistent symptoms:
        Trigeminal nerve compression, i.e., tingling and numbness in left cheek, jaw and throat
        Numb left side of tongue with frequent pronounced slurring of speech
        Drooling out of left side of mouth
        Sporadic spasms of left side of throat, causing choking and an inability to swallow or speak for
        several minutes

        Loss of fine motor skills, especially handwriting and typing
        Numbness and tingling of right fingertips, causing clumsiness and reduced motor function
        Regular hand and foot muscle cramps and spasms, both sides
        Inability to grip or open things like cans, jars, lids, etc.
        Inability to lift anything heavy (over 15 pounds)
        Continual numbness, tingling, weakness and perceived (but not actual) temperature fluctuations
        in right leg

        Gait imbalance, causing staggering and falling when walking or bending over
        Inability to drive my car (must now be chauffeured everywhere)
        Dizziness/vertigo (no nausea though)
        Blurred or unstable vision, preventing most or any prolonged computer use or desk work
        Occasional eye tics 

As you can see, daily functioning can often be a challenge in and of itself. Being the eternal optimist, I believe many of these symptoms will resolve themselves once the tumor stops swelling and actually shrinks someday. Given its current size (big!) that may be in another 6 months to a year, maybe even longer, so I'll just have to learn how to function this way in the meantime.

And just to complicate things a bit, on Friday (9/4) I began to taper off the steroids I've been on for four months now (Amen!). However, I've been warned already that doing so would most likely accentuate any tumor symptoms I may already be having. Great, just what I wanted to hear. So buckle your seat belts, here we go for a ride again. Some days I wonder where all this is taking me, but I'll leave that discussion for the philosophical musings.

Well, that about sums up the medical update. My neurosurgeon has written a supportive letter to go with my SSD application that essentially says I am totally and permanently disabled and cannot work again, but you know how much I like labels like that...  Besides, he and I always tend to disagree about my condition and I know he's just helping me in every way he can to ease my situation, so I am grateful for his letter on my behalf. I only hope that his assessment is not as accurate as he makes it! (though yeah, I know I won't be holding down any 9-to-5 job in the near future.) So that's it for now folks. On to some philosophical points next.

Philosophical musings

 My-oh-my, the blessings and gifts from this tumor never seem to end! Case in point: We all dread having to face our worse fears or deal with our issues at any time; it's always so much easier to "let sleeping dogs lie" and get on with the daily routine. I guess I didn't read the fine print on my soul contract when I signed on for this particular ride, as I am now facing three of my biggest issues head on, namely, 1) I hate being in debt (to people or institutions), 2) I hate being dependent on anyone for any reason, and 3) I hate to ask for any type of assistance, since I have always been able to do everything myself.

So here I find myself, in debt, dependent on others to get around, and now asking for official assistance to help me through this next phase. How perfect a match is that? I am having to face head on, in a very real way, my biggest issues and am learning how to deal with them on an emotional and psychological level. There's no better way to deal with one's fears than to face them head on and realize they're not such the big bad boogy-man you may have thought they were.

It's amazing to me the depths of courage and the reserves of strength one can find when forced to call on them for survival. People keep telling me how impressed they are with my courage and optimism in the face of what I'm going through but frankly, I believe all of us have those same reserves, we just all haven't had the same opportunities I've been blessed with to call them up.  ;-)

One thing has become crystal clear to me through all of this and I say it to whomever asks about it so I'll reiterate it here. I'm often asked how I can be so positive given my dire situation. Easy. Reality is what it is; the only control we have is how we react to it. So we can choose to either wallow in self-pity and negativity (a common enough reaction for most of us) or we can choose to be positive about our situation and make lemonade out of the lemons we're dealt.

Given the choice (AND IT IS A CONSCIOUS CHOICE, ALWAYS) to feel lousy and overwhelmed and focused on how negative it all is, or to feel optimistic and hopeful and a bit better each day, well, it's obvious to me which I choose to feel. We are not used to knowing that we have a choice but we really do, at all times. The reality of the situation remains as it was; only our attitude towards it has changed. And that in itself can begin to change even the physical reality of our health, as it is well documented that the biochemical response to feeling good helps our bodies to heal, while wallowing in negative thoughts and feelings create a whole different cascade of chemical reactions in the body that can hinder healing.

Once we realize that a positive outlook is beneficial to our healing, and that in any given moment we can consciously CHOOSE to be positive, well, the rest is mostly practicing choice. Of course, it does takes practice at first because we've all been conditioned our whole lives to be the victims of circumstance rather than taking control of our lives, but it is do-able, and oh-so-liberating once you realize that you are in control and can change a thought or two to make your life better. Try it sometime. After all, the reality of where you are (whether it concerns a health issue, finances, relationships, or whatever) is what it is; only your attitude toward it can change. And you have total control over your own thoughts and attitudes, so go for it! With dedicated practice, you'll be on a positive note in no time.

A piece of advice for getting started on positive thinking: sometimes you just can't muster a positive happy thought about where you are or what's happening in your life right now, especially when there's physical or emotional pain in your current reality. I'm not saying you need to sit around thinking of fluffy clouds or puppy dogs and lollipops to feel better. If you can just start by reaching for a better thought, anything positive about your situation or life in general, you've just moved into a more positive place. Even if "feeling better" means you moved from a feeling of despair or hopelessness to one of anger or rage, at least your energy is moving upward. From anger you may reach for frustration, from frustration to determination, from determination to hopefulness, and on up the ladder to feeling better every day. Eventually you will feel good no matter what circumstances you find yourself in. It's a process, and it does take some effort to break our old patterns of negative thoughts, but it does work and is very beneficial to healing.

 

Well, enough philosophy for now.     I hope it may  help someone else going through similar circumstances. I know I can't change what has transpired up till now (I refuse to waste energy on playing the "what if" game) so the only power I have available to me is in the Now and I have a choice as to how I deal with my reality from this point forward. Why not face it with good humor and a positive outlook? The alternative is hardly appealing, wouldn't you agree? The choice to try it really is that simple and easy.

Oh, and on that note of finding joy wherever I can, I've helped form a new chapter of the Red Hat Society (see: www.redhatsociety.com) and our chapter is called the "What the Hell Red Hatters." On Wednesday Sept.1st, we had the opportunity to participate in the Ravalli County Fair parade and we went in full regalia - red hats and purple clothes, with feather boas - in a 1933 remodeled flatbed truck. I was only 5 days out of surgery, but my friends kindly picked me up at home and then installed me in a chair in the truck, so all I had to do was wave at the adoring crowds and then get shuttled back home. The big floppy red hat covered all my surgical bandages so it worked out perfectly. I had a lot of fun (We even won a ribbon!) and it certainly picked up my spirits after the hospital ordeal!  

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The "What-the-Hell" Red Hatters float, and Val, the "Queen Mother, with their 2nd place ribbon.


One last note about finding the fun in your life when faced with adversity: there's no better time to find the joy and laughter than when you most need it and an opportunity presents itself to you to do so. Case in point: to put a shunt in my head it was necessary to shave half my hair off, something that was not even done for the big brain surgery I had over two years ago. So I woke up with half a shaved head and lots of stitches that were, frankly, pretty ugly.  I could have moaned about how awful I now looked or, as I have CHOSEN to do, I decided to see the humor in it and what fun I could get out of it.

So, at the mature age of 50, I decided this was the one opportunity in my life when I had a darn good excuse for sporting a Mohawk hairdo. That's right, I decided to even up both sides of my shaved head (it'll grow back more evenly this way anyway) and as long as I had two shaved sides, well of course there would be a stripe left in the middle, so why not go Mohawk?

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What a novel idea! I would never just do this on my own, but hey, one side of my head was already shaved, so why not have fun with it? Some of my friends think maybe the surgeons have drilled into my brain one too many times, but I'm not crazy, just looking for the positive in every situation. So here is my latest look.

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I put in the color (Red Hat Society colors, of course) only for some pictures because that hair gel dries like cement and is hard to sleep on. In the meantime, while my hair grows back, I go out with a bandana on to cover the shaved spots and the scars. See, I'm not totally nuts (yet). But I am looking at whatever ways I can to make the most of what I have to deal with. These kinds of challenges are a great way to get your creative juices flowing, though I don't recommend multiple surgeries to be creative! Have fun now and save yourself the challenges!

That's all for now. Thanks again to all of you who have been sending me positive thoughts and prayers - they obviously are working! Keep up the good work, as I'm not out of the woods yet.  I'll do another update in about three weeks after I'm off the steroids and I see what Grok is up to without them. Many blessings to you all and I'll answer e-mails and phones when I can.

Love,

Val

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