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January
2012
I've
tried hard to accept what has happened to me. Sometimes I am okay with it and other times I really struggle, especially
if I'm having exceptional pain such as the gripping headache that seems to have moved in the past week. Just the
other day I was asked the question, "How did your illness change your life?" I said that I could sum it up
in one word: "loss." And once I began recounting, I was shocked at the scope.
Maybe by reading this any visitor to my site will see how devastating a brain tumor can be.
Since my first surgery twelve years ago I constantly
ask myself "Who am I with all these deficits, the worst of which are my brain cobwebs?" Plus: feeling
like I'll fall at all times and constant scalp pain to double vision and trouble finding my nose with my eyes closed.
At 3AM today I had to clean out my trach and fumbling with the suction equipment was a stark reminder
that my hand-eye coordination is shot. My brain tumor resulted in a loss of independence (career, driving,
living on my own), a loss of personal life (marriage, kids, a pet), and a loss of my favorite hobbies (golf, hiking/birding,
running, step aerobics).
Robi Tamargo helped me see early in our sessions that all of this has been terrible
to be sure, but it has not been catastrophic thankfully. I realize how much worse it could have been. I continue
to try not to speak or think in disaster-mode but that is easier said than done! And when I confess these feelings
of being robbed, I want people to know that it's not that I ever thought I deserved better; I understand that it
is what it is, but it is HARD, please know how hard it is. That's all.
An important note: I am grateful for all the positive things
that have come out of my journey such as the contacts I've made via this website and the relationships with my family
and friends who have helped me so much - my losses go along with these terrific gains. July 2010I was blown away by Alice Stewart Trillin's 1981 article
"Of Dragons and Garden Peas: A Cancer Patient Talks to Doctors" in the New England Journal
of Medicine. You'll find many people who have written about it on the internet. My response to looking death
straight-on years ago matched Alice Trillin's response. And it still rings true today as I wrangle my
way through life with a potentially fatal disease. For years I have wanted to post this on my website; now "On
my Mind" is a good place for it. She begins with the
primary contradiction that all of us fear death even though we go about our lives feeling "we are immortal."
The defense mechanisms which Trillin refers to as our personal "talismen" serve to protect us when we confront
our mortality. Patients believe in the wonders of medicine and the doctors who practice it. Likewise, physicians
believe in their patients' abilities to confound death. Also very important to Trillin is a patient's sheer
will to live, our internal power (whether real or imagined) to overcome illness. She rightly explains that this
particular talisman (defense mechanism) makes patients seem "brave" to others who are looking from the outside.
Personally, I've come to calling this "putting on a show." It's exhausting, necessary, rational, and
yes, "brave." The other talisman that Alice Trillin writes about is our tendency to avoid even thinking about
death when we seek refuge in the trivia of our daily lives, purely as a coping mechanism. Caring about her garden peas
is her example of this. Mine would be my meticulous cleaning of the kitchen or attempts to keep on top of my e-mail.
Trillin's focus on her garden peas rather than on her blood counts meant that she could go back to being who she
remembers before she got cancer. The same works for me. The trouble is that when you're healthy, you can more
easily do this - the challenge is having the capacity/the actual ability to focus on the seemingly unimportant details.
Another talisman that some people find helpful is a leap of faith, a definite sanctuary in religion. That has not been
my experience, nor was it Alice Trillin's. Trillin's
reference to dragons hits home. Cancer cells, like dragons, may be put down once but they are always lurking,
ready to rear their ugly heads. My ependymoma has mirrored this path. Everyone who lives with a chronic illness that
might be in remission has no choice but to go through what remains of life with this knowledge that the dragons could wake
up anytime. What is remarkable about Alice Trillin's
outlook is that even as she acknowledges the "terror" (the death and disease that are part of her life) she understands
that she is living the ultimate, fullest life possible as she wakes up every morning and goes about her daily activities,
hoping to "convince the dragon to stay away for a while longer." March 2010 What kinds of things can go wrong during treatment for a recurrent ependymoma? Here are mine: When I swallow
it takes me two tries to get anything down, and usually after a few hours I'll cough up remnants of my meal that have
stuck around in my throat. I can't swallow fibrous foods like beans and raw apples and carrots. I have to
clear my throat after nearly every swallow of food. My brain seems to freeze when I have to decide something in a hurry
or if too many options are presented to me at once. This only started happening after the 3rd surgery. Every surgery
seems to have chipped at my mental sharpness, my medium-term memory, my concentration. These don't bother me physically,
obviously, but they are a factor in my life. Things take much longer to accomplish. even when I'm not moving
I have a swimming feeling in my head, sometimes with a feeling of building pressure or a full-blown headache. nearly continual
headaches, including shooting pains, seem to be in my temples but also over my entire head pulling, tight sensation, creepy
crawlies on most of my scalp - it hurts to wash my hair normally, to work with it, even to lie back on
a soft pillow. I am aware of my scalp all the time. gasping reflex - throughout the day, since 3rd surgery - didn't have it while I was on the vent at night... hypercapnia? tightness in trapezoid
muscles in upper back and in neck total loss of balance - even with a rolling walker, a grocery cart, or the
one-armed crutch, I'm still wobbly and scared that I'll tip over. One of my stretching videos has you put out
your left foot and bring it back in, then out to the side. I can barely do this. The right side is slightly easier
thankfully. Having one foot even slightly off the ground feels extremely dangerous. My right leg just doesn't want to do anything
- like walk. I can only move in slow motion, even when I'm on the floor and don't have a fear of falling, like when I
turn in bed or if I change positions when I'm stretching on the floor. It's like my joints, muscles, and tendons
don't work easily anymore in any way. All my joints seem to need oiling but not just at the surface but their
inner mechanisms. Getting dressed takes enormous effort. double vision - prisms help but even after all
this time my eyes don't stay fused 100% of the time excess saliva and crud on my tongue and in the back of my
throat, worse at night but it definitely builds up during the day. I must not swallow much or well during sleep - I
end up with saliva all over the towel/pillow and on my face. I have a hard time swallowing in the daytime so it
makes sense that it's worse during sleep. I plan to resume speech therapy to better manage my excess saliva
when I'm speaking to people. tooth sensitivity to cold and citrus from grinding my teeth (only after 3rd surgery)
helped by years of nightly use of a bite guard My left arm doesn't hang down normally and I regularly hit my flying
elbow on door frames and walls. My legs feel either too loose or too frozen, and usually one leg feels like
it is collapsing while the other refuses to bend. It feels like weights alternate between my shins and feet which
cause me to veer off course. I feel like I'm in a moonbounce. Wearing stable sneakers doesn't make a difference. left shoulder
just won't heal even with stretches of rest and PT- the one I injured when
I lost my balance on the stairs in 12/2007 - obviously the fall was due to post-op deficits but is it possible that I'm
not healing as well as before the brain tumor? It seems like a sprain such as this should have healed by now. speaking sometimes
feels like my tongue is in quicksand and it's all I can do to wrap my tongue around a series of words. I cannot walk
in a straight line - ataxia? cerebellum? Minimal control over my limbs. Another strange sensation is that
I know my legs are adequately muscular, yet within a few minutes on my feet my legs and feet are so tired I collapse.
I consciously choose to stay and wait when in the past I would have gotten up to go go go. hand-eye coordination - practically
gone. It's a challenge to tie my shoes, get dressed. proprioception - practically gone. I have
to grope to find my own nose in the dark. my left hand and fingers (especially my thumb) shake and I pretty much
avoid using it unless I have to. I can no longer put in an earring with my left hand. If I try to hold something
between my thumb and forefinger my hand will start shaking so much that I end up dropping whatever it is. If I press
down on the counter with my left hand it will shake so much that it recoils. queasiness of the brain / foggy /
cobwebs / swimming feeling: it makes me feel removed from the world, isolated, unsure if I'm really having the same
reality as other people My VP shunt aggravates me. The head end doesn't bother me but it throbs in the abdomen - sometimes
it's so painful it takes my breath away. If I do a situp, it feels like it is pulling and I can even hear it
(or I think I can) extremely dry skin, itching all over - not brain tumor related? but a difficult problem to manage with all of my
other issues I can't really feel this one, so perhaps it's not suitable for my "complaints" list, but I can't
overlook the way my throat and tongue collapse causing obstructive sleep apnea. On second thought, I surely felt the
effects of months of compromised sleeping which led to respiratory failure -- I am certain that the obstruction issues
were not present until after the 3rd surgery. The area around my trach has been very painful though getting rid of
the granulation at the stoma has helped tremendously. I wonder if my body is not as comfortable with the invasive trach as
it was back in 2000 after only one surgery. I want to shout - "I don't know myself anymore!" I
feel I'm a shell of my former self, that I don't recognize myself or my body.
January 2010 My brain tumor journey is full of physiological losses such as normal eating, normal sleeping, normal
vision, normal appearance, normal pain levels to name a few. But the physical loss that looms largest
is a big one - freedom of movement. I feel almost desperate to try and describe what it's
like for me on my feet. I should start by saying that even when I'm still I have a swimming feeling in
my head, sometimes with a feeling of building pressure or a full-blown headache. This starting point doesn't bode
well for my moving around! Honestly, I don't know how I do it, except that the alternative would be to completely
give in to the difficulties and not move. As it is, I wonder how I've only had two bad falls since my 3rd surgery
when I noticed all of my deficits had worsened. (I sure appreciate when people put out their stiff arm and let me use
it to go up or down a curb if there's no railing.) The most discouraging thing is that even with a rolling
walker, a grocery cart, or the one-armed crutch, I'm still wobbly and scared that I'll tip over. My legs feel either like overcooked pasta or frozen tundra, and usually one
leg feels like it is collapsing while the other refuses to bend. It feels like weights alternate between my shins and
feet which cause me to veer off course. My wonderful physical therapist Valerie Gibson first made me aware
of the feet as one of a person's balance centers. Sure enough, I feel inordinate sensation in my toes
and balls of my feet, like they are hanging on for dear life. My toes scrunch up just to help keep me from
falling. Having one foot even slightly off the ground feels extremely dangerous. I literally cannot walk in a
straight line. I had a little of this problem in 2000, but it improved within a year. I looked
up the definition of ataxia on Wikipedia: "Ataxia is a neurological sign and symptom consisting of gross lack of coordination of muscle movements.
Ataxia is a non-specific clinical manifestation implying dysfunction of parts of the nervous system that
coordinate movement, such as the cerebellum." Bingo, the cerebellum is mentioned
prominently in both my 2nd and 3rd operative reports. So
much is "firing" wrong if that makes sense. I've lost control of my limbs the way I used to control them.
It doesn't help my balance that my left arm wants to fly away and I hit my elbow on the wall all the time! My mobility problems feel deeply rooted from my inner core. It's like a
force that my body has tried to fight but lost. Another strange sensation
is that I know my legs are adequately muscular, yet within a few minutes on my feet my legs are so tired I collapse (I shouldn't use
this catastrophic word but it describes what I do the second I see a chair). My problem is not from lack of
strength, I know it. My hand-eye coordination and my proprioception
have vanished and those were two skills I took for granted - how I'd love to have them back! I'm sure they would
help me feel more at ease on my feet and in the world. MedicineNet.com defines proprioception as "the ability to
sense stimuli arising within the body. Even if you are blindfolded, you know through proprioception if your arm is above your
head or hanging by your side." I often think of what it would be like to just
move again without effort - I remember in my mind but my body won't cooperate. I long for my running days yet I
can't even go two strides. I would love to just move without thinking or feeling. Sometimes it cuts like a
knife to be around people who are moving freely the way I used to. I'm
disappointed that I can't find the words to express more eloquently what a challenge it is to move, but hopefully this
is a rough explanation. I certainly am grateful for the level I have but the way I am feels like a "no-man's
land" and the prospect of living in it is daunting. Thank you to the professionals and my family and friends
for helping me.
August 2009 "All
love begins with hope." Thank you to angel Jane Combemale for this quote, the perfect way to sum up the annual
Race for Hope. It's been over three months since this year's race, but the spirit
of the event continues to resonate. People try to describe the event with words that just don't do it justice,
but inspirational, hopeful, sad - these are apt - and they all blend together. This year I personally felt these
swirling emotions. In years past, I was able to walk most, if not all of the 5K course, which winds in front of the US
Capitol starting at Pennsylvania Avenue right where I worked downtown in 1993. This year, though, my unsteadiness
and overall weakness and pain, topped off with the trach, meant I could only walk the first 100 yards and then had to sit
under a tent during the race. It poured off and on so at least I stayed dry! It was the first year
I'd brought my cane with me to Freedom Plaza (even with a cane I am wobbly and feel seasick when I move). My heart
beat faster when I watched survivors make it across the finish line in their unmistakable yellow tee-shirts.
I remember how I was slightly embarrassed in years past when my name would be called - "Carol Welsh - Survivor."
How things can change! This year I felt demoralized that I wasn't in that special group as I had
been the last five years. I was crying inside but I kept my chin up surrounded by the love and care of
my Madeira friends who stuck by me every minute. I was inspired by the outpouring of love and support from the
thousands of people who rallied for "my" cause. The excitement for the possibility of a cure for
brain tumors was palpable. The sad thing about the survivor shirt is that there just aren't that many... out
of 10,000 participants, there are probably 300 survivors - if that. Wearing the shirt produces a whirlwind of emotions
inside me - gratitude to be alive, grief for the people who have died, and appreciation for all the walkers, virtual
runners, volunteers, and sponsors who raised over $2 million to fund brain tumor research and patient support services. The spirit of the Race
is exemplified by an outstanding individual, David Cook, the 2008 American Idol. You might know David's story -
his brother died of a brain tumor the very night before this year's race. Yet David bravely fulfilled his promise
to attend, ran an excellent 5K, and led a team that raised over $200,000 - incredible! Check out David's post-race
speech at http://www.youtube.com/watch?v=lmizGmyc6Hw. He greeted every one of the survivors and posed for countless photos; what a genuinely nice guy! I got
the feeling he would have enjoyed having more time with the survivors than the 9AM start permitted. Another fine example of the fantastic spirit
of the Race for Hope is the marathon team from the US Military Academy at West Point. For the last several years, the
cadets have given up two days of their incredibly busy schedules and come to Washington. The cadets arrive
at 6:00AM to help with set up, run the race, and stay for the clean up. Rain or shine, you couldn't
ask for a nicer or friendlier group. If you haven't joined my team before, I encourage you to check out the Race for yourself - Sunday,
May 2, 2010. I guarantee you will be inspired, hopeful and sad all at once. See you at the starting
line! April 2009 If you are familiar with brain tumors,
you might have heard the phrase "disguised disability." I first read it in Paul Zeltzer's
book called Leaving the Garden of Eden. I'd like to share my experience, as I consider this to be one of
the most important aspects of my brain tumor story. From the wonderful people who have contacted me over the years,
I know my experience is shared by many. Consider one of the many invisible problems that people like me suffer from
- even with my special eyeglasses, when I look at you I'm often seeing two and the images float around. It's
a great reminder to never pre-judge someone you see using a handicapped placard in a parking space. There could be quite
a lot wrong that isn't visible on the surface. Double
vision is just the tip of the iceburg... Here are a few more examples of disguised disability: the moonbounce:
remember this attraction when you were a kid? You went in barefoot, and to stay upright you had to balance deep down
into your toes, and sometimes you couldn't help but fall. You felt the air bubble under your feet. You never
felt steady - cool! It was fun for a finite period of time, then your turn was up and you had to get back in line if
you wanted to go again. For me, walking around is like being in a permanent moonbounce. Unfortunately, I never
get to come out of the tent! Using a cane isn't the remedy for this, though it helps me get around mostly by coaxing
others to keep their distance from me. frozen joints: I wish I could use the Tin Man's oilcan liberally.
For that matter, I'd like to see the Wizard of Oz - maybe he could fix all of this! My complaint is not just stiffness,
it's a combination of numbness, shaking, and freezing, all in different body parts. My neck, pelvic bones and hips
are the most iced but my right knee is also stubborn. I have tried many therapies to address this sensation
and lack of fluid movement; so far nothing has worked. Every small movement even in a sitting position is like
a forced march. queasiness of the brain: this sounds bad, and it is. Imagine what typical nausea
feels like; now imagine you could have that in your brain instead of your stomach. I have yet to find a better
description of the disconcerting fog that I have lived in since my first brain surgery. It has improved for periods
of time, but with every procedure it has gotten more pronounced and lasting. Some fellow patients talk about a swimming
feeling or cobwebs. Dr. Fine once expressed his appreciation for my attempt to describe this, and he said, "I'm
so sorry you have to deal with this, it must be horrible." He is right. I would give anything to be awake
and out of the fog. I definitely feel the difficulty in seeming to live in a different world from everyone
else. I almost can't stand it any longer - I'm ready to be part of the "regular" world again. proprioception:
Another disguised disability is my lack of proprioception. To understand a bit about this, try closing your eyes, holding
out your hand, and then touching your nose with your finger. When I do this, my finger winds up somewhere
in the vicinity, but not on my intended target. Obviously it's not that important if you cannot do this particular
test, but when you apply this deficit to navigating throughout our world, it's really challenging - and uncomfortable.
Bottom
line: things aren't always what they seem. For brain tumor patients like me, remember the significant impact
and sometimes relentless presence of disguised disability. These problems might be invisible from the outside, but they
are exceedingly real. Thanks for reading! Future topics: - feedback from the brain tumor community - extreme
feelings - the basics of sleep apnea - what makes an outstanding therapist
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