June 2017
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 called!
From now on, just call me “Carol Warren Stuck Welsh, Ependymoma Survivor.”
October 2016
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!
http://blog.uvahealth.com/2015/05/26/podcast-tuesday-brain-tumor-treatment-research/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%253A+UvaHealthSystemBlog+%2528UVA+Health+System+Blog%2529
February 2016
Just read a powerful book by Paul Kalanithi: When Breath Becomes Air
October 2015
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)
May 2000
Tracheostomy #1
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. Howard Fine)
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. Daniel Hwang)
Feb 18 2013
Gamma Knife surgery at UVa (Dr. Jason Sheehan)
Oct 7 2013
Right partial mastectomy and sentinel node biopsy at UVa (Dr. Shayna Showalter)
Oct 28 2013
Re-excision lumpectomy for DCIS (Dr. Showalter)
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. Charles Durbin)
May 2 - June 24 2016
36 proton beam radiation treatments to my mid and lower spine at HUPTI (Dr. Allan Thornton)
April 2015
I heard a thought-provoking thirteen-minute segment called "Speaking in Tongues" on NPR's On the Media (http://www.onthemedia.org/story/speaking-tongues/). 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."
"acceptable" side effects - a terrible phrase. I agree.
a new word - "scanxiety" - Over fifteen years of repeated MRI tests, I definitely understand that concept.
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.
February 2014
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 https://www.cedars-sinai.edu/Bios---Physician/A-G/Keith-L-Black-MD.aspx
The following quotations particularly
caught my attention:
November 2013
It's
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
a toll.
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
'depressed'?"
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 part...
Just know, your family (friends included) are grateful for you.
April 2013
News 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:
This is my latest recurring nightmare
For 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!)
Living a valuable life
My 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 of enlightenment!"
Being in the world when I feel so compromised
It's 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
I 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.
Recently 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.”
And 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.
[Note: 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. http://www.npr.org/2013/04/21/178255429/one-amputees-message-of-hope-for-bostons-bombing-victims]
Dear Howard,
Thanks for my appointment on 6/20/12 as always. I'm so grateful to you and NIH that I can't express it adequately.
I thought you and Irene and Megan would be interested in the list I came up with when I heard you say that I "have extensive brain damage from tumor and surgery and radiation" and "Your deficits are not minor, they greatly impact your life." Thanks for understanding - when I told you I am struggling I didn't intend a pity party. I was answering your question honestly. I love coming to NIH and seeing everyone and being cared for so I guess I try really hard when I come to the clinic but when you asked me directly how I am feeling I just replied how I might if I were at home by myself with my issues staring me down.
I've worked for years on accepting my deficits while trying to improve or at least maintain. I wish I were better on this.
Here's my brain stem related list - I have some things I've done to help these issues like my prism glasses, taking Nuvigil, stretching, yoga, strength training etc:
A dear family friend (my sister Elizabeth's godfather) wrote me to tell me he knows a "little of what it means" about my "putting on a show 100% of the time." I thought you'd like it.
For four-plus years of my stay at MIT I was closely involved with a brilliant colleague who had become blind at age six. He had a physical deficit – it was an important one, but it was bounded. He couldn’t see – big, certainly, but that was it. He wasn’t dizzy, nor did he have headaches, nor double vision, nor . . . the full list. And there was all sorts of support available to him. He had been for years at the Perkins Institute for the Blind; he had a seeing-eye dog; he had braille and audio books; he even had a cane that incorporated a sonar device to help him navigate. But, late in our time together, he confessed to me that still, a huge percentage of his total mental energy and intellectual horsepower was consumed by the task of, in his words, “acting, full-time, the role of a sighted person who can’t see.” I knew him a lot better after that conversation.
See you after the next MRI!
Carol
March 2010
What kinds of things can go wrong during treatment for a recurrent ependymoma? Here are mine:
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 one thing... 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.
Double-click to edit text, or drag to move.
Carolina Wren (My nickname and favorite bird)
