What is it like to have a permanent tracheostomy? Well, it is no fun at all. I'm a hostage to it. I'll just list the ways in which it "strangles" me. It hurts sometimes so much that I wince to disconnect the ventilator or even just to clean around the hole ("stoma"). I'd do anything to swim again, I'd do anything just to put my head under the shower. Often when I'm speaking with the Passy Muir Valve, it's like talking while running a marathon. It's so difficult because air is escaping and there's nothing I can do about it. If I push through, predictably I have a tongue spasm sparked by the extra effort I'm doing to exhale over my vocal cords. I'd love to hug someone without worrying about my neck, I can't meet a puppy without taking care to avoid a bite of the trach or the cuff that hangs down. Not that I'm meeting a lot puppies but that conveys how obtrusive it is! And I can't forget to mention the disgusting goop that builds up in the tube or comes out way too often. Thank goodness for the noisy suction machine and for the 4x4 gauze pads! Finally, how is it that I have a collar around my neck 24x7? How can I stand it? Even if I call it by its proper word (a trach "tie") it really doesn't help much. Sometimes I just can't believe I have this strap around my neck all the time. So yes, I feel like a hostage when it comes to my super flexible Bivona TTS trach. I always must have it. It is keeping me alive! Yikes. Yikes. Yikes.
We've always said that deficits are as important as surgery itself. Sure enough, my swallowing problems wreck havoc on things - so often unfortunately. Last night was an example. Here's what happened:
I took my current nighttime pills about 9:30 (3 Gabapentine capsules) with cottage cheese as I often do. Then I saw some huge red grapes on the counter and I decided to try one. I know that grapes can be impossible but I know how to spit out the skin and "save myself." The first grape went down surprisingly easily, so what did I do? I popped another one in my mouth! Well that one didn't go so well. I swallowed but it got stuck. I did my usual coughing techniques but it just wouldn't move. And I found out that one or more of the pills hadn't made it very far either. The pills were in "no-man's land" - and they started to dissolve and burn my throat. I I tried eating some crackers to push the pill or pills down - that didn't work. The culprit was above my trach as the stuck area usually is - just this time there was no downward movement. I tried coughing; I can't gargle, I felt a terrible burning.
My mother was terrific - I drank water, ate the cookies, coughed and gagged (pleasant) - all the while I felt the way you do if you vomit and the bile burns your throat (thank you to my wonderful friend and physician for nailing that description). I cried out "nobody knows that I go through things like this Mom!" Clavenda arrived at her usual time (10:30) and was ready to take me to the ER if necessary. LOL here - I was telling Mom I may need to go to the hospital, but when Clavenda said "let's go" I thought of how awful that would be to actually go there. So I was dissuaded from going to the hospital and my friend was her usual amazing self - predicting that I was going to be okay, that I wasn't in any danger etc.
Clavenda and I went downstairs and I ate some more cottage cheese and drank more water. Before midnight I was on the ventilator and sound asleep. What a night! I woke up with what I thought was a sore throat, but my headache and my shoulder pain were rearing their ugly heads so I didn't give another thought to my throat.
I did give all my morning pills an extra look of "I'm going to swallow you so don't give me any trouble" - and Clavenda's cream of wheat was perfect for swallowing as ever.
No more grapes!
How am I feeling? "STUCK"
is the word that best describes all of my ependymoma-related
problems. For this write-up, I won't use the medical terms I've
learned for my symptoms including but not limited to apnea, hypopnea,
neuropathy, ataxia, spasticity, laxity, dysphagia, dysarthria,
strabismus, nystagmus, esotropia, proprioception etc. Instead, I
will jot down how these problems manifest themselves. As a patient,
I am concerned with the reality of the symptoms, not what they are
- Exhaustion: I have
to will my body to get out of bed every single morning and after
every nap. I am always needing to push, to rally, to fight to be
awake and alive. That constant struggle itself is exhausting.
- Coordination: My
entire body, especially the left side, feels super-glued together.
It's impossible to move with any fluidity. It's as if there's a
neurological hitch in every fiber of my body. Moving with control
is an elusive goal.
- Sense of the world: I
feel like I'm in a golf cart on an interstate highway. On top of
that, I always feel I am trapped in a horrible moon bounce.
- Balance: I often
catch myself from falling, usually by leaning into something. I
lurch along with a wide gait in order to stay upright. I can't keep
my balance particularly through narrow spaces - it's that tandem
- Gait: My legs feel
like they weigh a ton. They are stiff and won't move with any speed.
- Headache: Whichever
nerves are firing on the mornings when I wake up with a headache are
stuck and don't let go of me for hours.
- Hard Twitch: When I'm
lying still my body shudders.
- Left hand: If I hold
anything for more than a second, my hand shakes uncontrollably, as
if it's stuck in overdrive.
- Right leg: Sciatica
pain (since November, 2016) has taken over my life. The pins and
needles in my right foot and calf are like something activates and
then doesn't shut off; same for the ache in my thigh and the sharp
pain around my piriformis muscle.
- Stoma: The
tracheotomy opening in my neck has been there since 2008, yet very
often it gets stuck in "extreme sensitivity" mode where
hooking up to the ventilator hurts and the tugging of the tubing
makes me scrunch my eyes from the pain. Cleaning the area, even
with a careful touch, hurts. Accidentally knocking the trach into
something makes me cry out loud. The site is not infected; rather,
it is enraged.
- My vision: Let's
see, how many ways are my eye muscles stuck which result in double
vision? Lots, apparently!
- Speaking: It
is tough to say the "g" and "k" sounds because
of my sticking tongue.
Literally, food gets stuck on its way toward my esophagus - the
vallecula is the anatomical term. It takes me two swallows for
every bite or sip. Often, it doesn't become dislodged on its own
and I go through hoops to move it the right direction.
- Tongue: This is a new
doozy that first happened in July, 2016. Frequently, especially
when I'm talking or eating (i.e. exercising my tongue), I feel an
odd sensation in my tongue and then it won't move. Each episode
lasts about 30 seconds, though it feels like forever! A paralyzed
tongue is the ultimate in "stuck.” The new normal for my
tongue since my first surgery is a distinct curve. This has never
changed. It means I bite my tongue all the time in the exact same
place - ouch!
- Breathing: My throat
is collapsed. When I sleep, my brain either forgets to tell me to
breathe or I breathe in "shallow" mode; hence, the hated,
- Digestion: I'm
starting to pin down that my muscles, such as they are, are not
engaging anymore; they seem to be stuck in an ineffective way.
From now on, just call me
“Carol Warren Stuck Welsh, Ependymoma Survivor.”
Very interesting interview from 2015 with my neuro-oncologist at UVA, Benjamin Purow. He is beyond terrific. He discusses the promise of immunotherapies and the increasing number of clinical trials. He mentions that he spends 3/4 of his time in the lab. Believe me, that 1/4 time he spends seeing patients is a huge gift to all of us who are lucky enough to see him. Thank you BJ!
Just read a powerful book by Paul Kalanithi: When Breath Becomes Air
...While all doctors treat diseases, neurosurgeons work in the crucible of identity... (71)
Part of the cruelty of cancer, though, is not only that it limits your time, it also limits your energy, vastly reducing the amount you can squeeze into a day (196).
Graham Greene once said that life was lived in the first twenty years and the remainder was just reflection. So what tense am I living now (198)?
[To his baby daughter Cady] When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man's days with a sated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing (199).
[From his wife's epilogue] And yet we did feel lucky, grateful -- for family, for community, for opportunity, for our daughter, for having risen to meet each other at a time when absolute trust and acceptance were required. Although these last few years have been wrenching and difficult -- sometimes almost impossible -- they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love (218-219).
Read this book and next time you have: a quarrel with a partner, a bad day at work, get a parking ticket, or can't decide what to wear, read it again. This book is about life, death, cancer, living with meaning, gaining perspective, and loving deeply. It made me sad and happy at the same time.
This timeline says it all! It's a wonder I'm alive!
Apr 19 2000
Emergency Room at Williamsburg
Community Hospital (Dr. Maurice Murphy)
May 3 2000
Craniotomy #1 at George Washington
University Hospital (Dr. Laligam Sekhar)
Exploratory abdominal surgery
Mar 2 2004
Craniotomy #2 at North Shore Long
Island Jewish Hospital (Dr. Sekhar)
April 8 – May 24 2004
Radiation treatments at Inova Fairfax
Hospital (Dr. Glenn Tonnesen)
Mar – May 2005
Chemotherapy treatments at Inova (Dr.
Oct 4 2005
Surgery at University of Virginia
Hospital to place VP Shunt (Dr. John Jane Sr.)
Dec 13 2005
Craniotomy #3 at UVa (Dr. Jane Sr.)
Dec 23 2008
Tracheostomy #2 at Reston Hospital (Dr.
Feb 18 2013
Gamma Knife surgery at UVa (Dr. Jason
Oct 7 2013
Right partial mastectomy and sentinel
node biopsy at UVa (Dr. Shayna Showalter)
Oct 28 2013
Re-excision lumpectomy for DCIS (Dr.
Oct 17 2014
Laminectomy and Resection (T11
Partial/T12 Total/L1 Partial) at UVa (Dr. Jane Sr.)
Oct 28 2014
Laminectomy and Resection (T6-T9) at
UVa (Dr. Jane Sr.)
Tracheostomy Revision at UVa (Dr.
May 2 - June 24 2016
36 proton beam radiation treatments to my mid and lower spine at HUPTI (Dr. Allan Thornton)
I heard a thought-provoking
thirteen-minute segment called "Speaking in Tongues" on
NPR's On the Media
It is an interview with Susan Gubar, author of Memoir of a
Debulked Woman. At first I disagreed with Gubar on a few points,
but listening again I found myself thinking, "This (ovarian
cancer survivor) woman really gets it."
Here are a few notes I jotted down:
The terminology of cancer can be
wacky at least, or may seem to cast blame on the patient at worst.
Examples: an "unremarkable" or "clean" scan
which is favorable; "negative" test results, also
favorable. She believes that "recurrence" is a better
word than "relapse."
effects - a terrible phrase. I agree.
a new word - "scanxiety"
- Over fifteen years of repeated MRI tests, I definitely understand
Gubar doesn't like warfare
language about cancer such as the word "survivor." She
says it's hard to fight something that is in your body. Moreover,
some people will not survive. Personally, I've always felt
that the term "survivor" was bigger than who I truly am.
Yet when you assemble with one hundred other brain tumor victims
(yes, victims) at the Race for Hope starting line, it feels
wonderful and bittersweet (in other words, “complicated”) to be
one of the survivors.
Gubar made me laugh when she said she doesn't like when
people tell her "you look great" or "you'll beat
this" or "my grandmother had what you have and died after
four months.” It reminded me of a guy who told me how lucky I was
that I didn't have kids to worry about! Here's an idea: don't say
anything except, as Gubar suggests, "would you like to talk to
me and in what framework?" Perhaps that is unrealistic, so
maybe the takeaway from this is that cancer patients have heard it
all. The words can be funny, even as they sting.
The thing that struck me is that
annoying phrase, "it is what it is" - if your brain tumor
comes back, it doesn't matter if you “relapsed” or if it
“recurred.” The reality is you have a problem! Language
subtleties aren't going to change the situation.
Having said that, I do believe that
language affects our emotions and therefore it affects how we cope
with disease. So using preferable terms or understanding the hidden
meanings of certain words surely does no harm, and may even help.
Gubar summarized this perfectly: "We can't get rid of metaphors
so create more of them" to describe your experience.
For now I'll hope to be a survivor by
any means – a combination of fighting and being.
I just read an interesting book –
Brain Surgeon: a Doctor's Inspiring Encounters with Mortality and
Miracles by Keith Black, MD. He has performed more than 5,000 brain
tumor resections. I googled him at
The following quotations particularly
caught my attention:
- Like fighter pilots, excellent
neurosurgeons must have finely developed motor skills, pinpoint
accuracy, and the ability to remain cool in high risk
situations...That leaves only about fifty neurosurgeons nationwide
who specialize in brain tumors (6-7).
- My job is to sneak into the brain and
tease the tumor out, without the brain ever knowing I was there (9).
- The brain...is the ultimate reduction
of self...the brain is the one part of the body we cannot damage, cut
out, or replace and still be ourselves (29-30).
- Whenever I look at the pathways and
intricacies of the human brain, I am looking at God's art (32).
- A patient's steely resolve to fight the
disease and to persevere in the face of a daunting diagnosis is at
least as powerful as any drug or procedure in a physician's arsenal
- The brain stem is an anatomical
minefield for surgery (74).
- [Doctors] need to become thoughtful
warriors in the brain, doctors who are both knowledgeable enough and
cautious enough to take only absolutely necessary risks for their
patients. The way to do that is to make sure they treat every
patient as if that person were a loved one of their own... (75)
- Unfortunately, the majority of benign
tumors don't stay that way. Over time approximately 70 percent of
low-grade, noncancerous tumors will eventually morph into higher
grade, more aggressive tumors (91).
- And that means that the war on brain
tumors is not going to be won in the OR but rather in the research
- The brain stem contains the wiring for
the entire neurological circuitry of the body (143).
- My position [on complementary medicine]
is that I don't view it as an either/or situation. There is a
definite place in traditional Western medicine for Chinese herbal
- Even when we know the odds, we don't
know who will be a long-term survivor and who will not (213).
- It is important to note that a risk
factor is not the same thing as a cause (217).
- I haven't had a dental x-ray in twenty
- It was yet another reminder that my
patients fight their disease with the greatest dignity and spirit one
can ever imagine. Their courage inspires me to focus every drop of
energy I have in myself to provide them with the best odds possible
to beat this disease, or at least give them as much quality life as
our surgeries and medicines will allow. They are my heroes, and I
hope one day all of their bravery and determination will help lead to
a cure (222).
Thanksgiving and I'd love to join the crowd and make my gratitude
list but I'm empty. Even the things I know I'm immediately grateful
for (most recently my successful treatment for DCIS in care of
wonderful Dr. Showalter and the inspirational life changes that
sisters Margaret and Lyn have accomplished) are being outweighed by a
feeling of hopelessness. I'm not sure how I even get out of
bed every day. I've been at this for so many years that it has taken
This year I was invited to join the traditional
Thanksgiving gathering of Elizabeth's husband's siblings. In the
midst of the banter, music, jokes, and adorable children, I felt so
alone. It hit me that I've wrestled with my brain tumor for one-third of my life and how little I have to show for my life. I don't
personally share any of the things that were so important to people
there - a marriage, kids and/or grandkids, a career, a beloved pet,
fitness, a skill/hobby, a strong faith in God. Zilch. Nada. What I
got out of my Turkey Day was a sense of failure. It's a stark
feeling when you're with people you love (thanks Mom and Margaret in
the car on the way home) but you still feel lonely and doubtful about
a reason to persevere.
My experiments with nightly oxygen and
daily Ritalin are not the answer. Every cell in my body seems
compromised. From legs that feel and act like cooked pasta,
dizziness, wild fluctuations in my vision, my tracheotomy hole, and
weird muscle spasms to headaches, tongue paralysis and choking
spells, I feel like every physical movement or even idea is too hard.
It's as if my lack of physical coordination hinders the coordination
of my spirit. That is scary.
I don't think clinical
depression is my problem. I've tried antidepressants over the years
to "take the edge off" or to "get through" -
what's going on now is sheer frustration and sadness with no symptoms
of depression. As Dr. Garson asked, "How could you not be
The other day I asked Dr. Jane to confirm
that my brain tumor has come back in exactly the same location every
time over thirteen years of surgeries, radiation and chemotherapy.
His answer: "yes, same location." My first thought was,
"No wonder so much is malfunctioning!" Another view: “It
is a wonder that more isn't malfunctioning!” I continue to be
astounded that I'm alive. I also feel guilty that I am as lucky as I
am, that it could be worse. Absolutely I'm grateful for so much and
for so many – and yet...
A shout-out to people who will read
this and try to understand. Please don't say "it is what it is"
because I know that. My essential losses aren't readily fixed. I've
been working to accept them for many years. I keep longing to feel a
glimmer of the old me, just a glimmer! These days I'm being reminded
of what hitting a brick wall is all about.
In the past two
days of the holiday weekend I've been touched especially by dear
friends Yogita Mumssen and Judy Hope- who reminded me how unfair it is, that I have a
gift I'm giving to others and that I'm loved. And then today I
received the kindest e-mail from a stranger whose 22-year-old son had
died two years after his ependymoma surgery. In her grief, somehow
she managed to reach out to me. I was blown away by her note and I
thought I'd conclude this essay with her encouraging, selfless,
remarkable words. It's as if she had read my first few paragraphs,
that she knew I was down. I thank her with tears in my eyes.
At any rate, I
thank you because you help me to stay centered on the whole picture
of my son's story...as hard as it is to face.
Please know I am
proud of you. And also know I am so sorry you are undertaking this
life's struggle. You are brave, which I realize is no consolation.
I don't know how
to end this email properly, there is really a lack of words on my
Just know, your
family (friends included) are grateful for you.
alert! My 25th high school reunion and the Race for Hope are coming
up the next two weekends. It seems like a good time to share the
following thoughts that have been on my mind:
is my latest recurring nightmare
vacation I have to go miles in extremely rough surf in a boat that is
not seaworthy. Everyone tells me that we'll be alright since we have
life jackets. When I remind them about my trach they tell me to just
swim like "you used to, that was your favorite thing." I
show them the hole in my neck and they don't seem to understand what
the problem is. I try to have a good time with everyone, but I can't
enjoy the scenery because I keep worrying we'll capsize, my lungs
will fill, and I'll drown. (At this point I wake up, thankfully!)
a valuable life
goal with help from wonderful Robi Tamargo has been to live a
"beautiful life, a valuable life" - she is certain I can do
it. The more I struggle physically, the less sure I am that I'll do
this. I was touched by a note from a long-time pen-pal in CA. She
wrote: "Like you, 'I'm hanging in there.' Sometimes I'll think
that's just not good enough, that I should make a more meaningful
life for myself. But, the truth is my array of health issues demands
a great deal of attention and rest, so I just do the best and most I
can. Maybe I'll come to terms with that when I reach a higher level
in the world when I feel so compromised
complicated to describe why it's exhausting for me not only to get
around, but to be around. Every corpuscle in my body feels depleted.
[I remember what it was like to be depleted from chemotherapy and
what I have now is different.] I get incredibly fatigued walking
even short distances - it's not cardio-related, it's nerve-related,
must be. I'm not out of breath but I'm almost too spent to make it.
I could see the prospect of improving if it were a case of being
winded. Forcing my legs and arms to move in coordination is
exhausting. I am straddling a world between needing a walker and
needing a wheelchair. My sensory perception is so out of whack that
just being in the world is tiring - I know that because of how hard I
seem to be "working" when I go into a store or into a busy
area with an overload of input to process. I know my double vision
doesn't help things - even with my prism glasses I had trouble; now,
with one eye patched it's harder in a different way... Dr. Fine
summed it up in 2010 when he said, “you are suffering every day
with things that there are no really good therapies for."
The range of emotions that come with a chronic disease
know that at my reunion I am going to face the nagging question,
“Will I always feel like I'm the one who has been left behind?”
For years I have read the Madeira and Princeton Alumni publications
with clenched teeth, shocked at how people I knew have lives and
capabilities I assumed I would have.
I was asked to explain my participation in the Race for Hope: "It's
a major effort, lots of hugging, dizziness, fatigue, trach and neck
pain, lots of sadness, lots of trying to remember names, longing to
be a walker/runner like I used to be, feeling sad I don't have a
husband or my own children walking with me, lots of wondering who I
am, feeling strangely lonely in the huge crowd...just a lot...good
things too – gratitude for making it another year, having people
come up to me and exclaiming “You're Carol Welsh?!”, having my
annual picture with terrific David Cook, bursting with pride for my
sisters and mom, and cherishing every single member of my team.”
there it is - it boils down to the people I love in my life. I wish
I could express my thanks adequately or even begin to repay all the
love and care I've received.
just after I finished this essay, I listened to this moving
interview with Lindsay Ess on NPR. I was struck by her courage and
grip on her suffering. Clearly, people's trials might be different,
but how they endure and manage them can be eerily similar.