On My Mind
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Picture above: Carolina Wren (My nickname and favorite bird)
My Ependymoma Story
In the fall of 1999, I began experiencing unusual symptoms including nausea, balance troubles, violent hiccups, and vomiting upon waking up in the morning. These issues increased in severity and frequency over the next six months. In April 2000, following months of tests and misdiagnoses, I was diagnosed with an ependymoma, a rare adult brain tumor. I was 30 years old at the time, about to earn my MBA from the College of William & Mary. I had a complete resection by Laligam Sekhar, MD at George Washington University Hospital on May 3, 2000. I had major complications afterward (including a temporary tracheostomy, loss of my ability to swallow or gag, pneumonia, and exploratory stomach surgery) and spent 8 weeks in the hospital, but recovered significantly within two years. I was running, hiking and able to drive a car.
In March 2004, after an MRI showed tumor recurrence, Dr. Sekhar did a partial resection of the recurrent tumor, this time at North Shore Long Island Jewish Hospital. He recommended that I have IMRT radiation at Inova Fairfax Hospital under the care of Glenn Tonnesen, MD.
The tumor kept growing and with it came hydrocephalus, headaches, and other issues. Under Dr. Howard Fine's care in 2005, I tried oral Temodar plus a combination of IV carboplatin and IV etoposide (VP-16). This chemotherapy regimen did not slow the tumor growth. I found Dr. John Jane Sr. at UVA Hospital in Charlottesville, VA in the fall of 2005 - he placed a VP Shunt which instantly relieved my hydrocephalus. Two months later he did my third surgical resection.
After a period of stability, I developed mysterious new symptoms in the fall of 2008. I gained 10 pounds in about a month, my hands and wrists became swollen and spongy, and I had grown increasingly confused, exhausted and was hallucinating at night. I was in the process of scheduling an ultrasound on the recommendation of one of my doctors when on December 19, 2008, I had sudden respiratory arrest. Fortunately, I was in the ER when this happened. The CO2 level in my arterial blood was 75, and climbed as high as 124 (normal is 35-45). I was intubated, ventilated, and ultimately ended up with another tracheostomy. Subsequent exams revealed an extremely collapsed throat/tongue/palate and hypoventilation, which means I was not expelling C02 during sleep. The ENT doctor I consulted suspected this had been caused by my brain surgeries and/or radiation treatments.
I was extremely debilitated after this episode and spent the next two months in a rehabilitation center. I was placed on a ventilator through my trach every night and all my symptoms significantly improved. At home, in an effort to be able to lose the trach and ventilator, I tried CPAP and BIPAP but couldn't tolerate the pressures needed to get air through my collapsed throat. I tried O2 through my open trach but that didn't help. Between 2/15/2009 and 10/2014, I slept with the trach open at night, curing my obstructive sleep apnea but I still retained CO2 - though sleep studies didn't specifically reveal this. But severe morning headaches and exhaustion plus a definitely worse sense of balance and coordination compared to the 7 weeks I was ventilated at night back in 2009 at a nursing home – all pointed to central sleep apnea. An ABG in April 2014 showed a steadily increasing CO2 level – 63.
I disliked the trach terribly but there was no alternative. I used a Montgomery button trach for four years that was collar-less and relatively easy to deal with.
When my regular MRI scan showed yet another recurrence in my brain in 2013, I had gamma knife radiosurgery by Jason Sheehan, MD at UVA. Subsequent MRIs show the brain tumor is stable.
Also in 2013, in an unrelated health development, I fortunately was under the care of another UVA surgeon, Dr. Shayna Showalter, who removed DCIS from my right breast. I discovered this through breast self-exam.
Now here came a big curve ball: spinal cord metastases. My ependymoma did not stop in my brain.
I had been having excruciating back pain for a couple of months over the summer of 2014 before having a revelatory MRI. In hindsight I should have suspected drop metastases but I hoped I had dodged that bullet and had not put spinal MRI high on my regular radar. I had two large spinal ependymomas removed by Dr John Jane Sr at UVA [Laminectomy and Resection (T6-T9) on 10/28/2014] and [Laminectomy and Resection (T11 Partial/T12 Total/L1 Partial) on 10/17/2014]. As tough as my previous brain surgeries had been, spinal surgery was extremely painful and debilitating. One day in the hospital while sipping a diet Coke I lost consciousness from CO2 retention (the emergency team came to get me breathing again) and I could no longer ignore the inevitable. I breathe normally in the daytime so it was clear I wasn't getting rid of the CO2 during sleep. I needed a ventilator and a trach revision.
At the second spinal surgery I opted to have my trach revised by Dr. Durbin and a Shiley 4 placed. After weeks at UVA Hospital in the ICU, I returned to Woodbine Rehabilitation Center for eight more weeks where I tried to recover from the spinal surgery. After several difficult months trying to breathe during the day, Dr. Lee in Fairfax recommended a Bivona TTS 6.0 that has a larger inner diameter than the Shiley; plus it's silicone, not plastic, so it's a lot more comfortable. I change it out every week. Since that 2014 trach revision I've slept with the vent at night (and am fortunate to have a wonderful nighttime nurse). My CO2 has decreased to a more normal level though I still don't feel refreshed in the morning the way I remember after a night on the ventilator in 2008.
No one can explain why my swallow deteriorated to the point that I was aspirating at UVA in 2014. Every day at Woodbine Rehab I did speech exercises and VitalStim therapy. I had the PEG (feeding) tube removed in April 2015. Keeping my weight up and trying to eat a healthy diet have been very difficult, though I have gained some since the 94 pounds I weighed when I left Woodbine in January 2015. Improving my diet and keeping my weight up are top on my to-do list! But many foods are difficult for me to eat, which makes this a challenge.
In a super development, I was referred to Dr. Benjamin Purow in 2013 by Dr. Sheehan. He has become my go-to neuro-oncologist / medical guru / immediate contact / most caring doctor. I have his cell phone number on my medical sheet in case I'm admitted urgently to a hospital other than UVA, which seems very likely since I live in northern Virginia.
Dr. Purow delivered this bombshell on 1/13/2016:
The new MRIs show that while everything is stable at the original tumor site and the sites of the previous spinal cord areas that were surgically removed, there are tiny new areas of enhancement highly suspicious for new ependymoma lesions on your spinal cord in your lower back. Three (and possibly a very vague 4th spot) are at T8-T9 and L4-L5 in the spine/spinal cord. Fortunately we seem to have caught them very early, based on how small they are.
To tackle these tumors and hopefully prevent others from growing, I had 36 proton beam radiation treatments during May and June 2016 to my mid and lower spine at Hampton University Proton Therapy Institute. This involved moving to Williamsburg, VA during the week for eight+ weeks with all my medical equipment and the help of my family. While proton beam therapy is becoming more accessible, at that time my options were quite limited and I was lucky to find a facility in my home state.
After all that, the saga continues. Dr. Purow wrote this on 2/9/2018:
I am sorry to relay that there are two very small new areas of enhancement behind the thoracic part of the spinal cord, and there is also a small increase in an area of enhancement at the cervical part of the spinal cord.
As of this writing, April 2018, after consultation with ependymoma expert Dr. Mark Gilbert at NIH, my strategy is to “watch and see” with my next MRI on May 11.
I want to live a meaningful life given my “new normal.” I have tried to accept my ependymoma and to convince myself that this has not been a catastrophe, but honestly, my life has been totally impacted negatively; I feel ruined. The life events I had expected - marriage, children, pets, a career - were derailed in 2000. I never bounced back after the third surgery in 2005. I never drove a car again after that. My double vision, my swallowing, my coordination, my balance, my control over my muscles, my headaches, my proprioception, my concentration -- all worsened. And now after spinal surgery my torso is on fire and I have back spasms and neck pain. I've tried Lyrica and Neurontin for nerve pain in my right calf and foot but neither has helped. For over a year I suffered from terrible sciatica pain. [Fortunately I was referred to Amanda Trucksess MD, a local physiatrist who identified where I needed cortisone injections. She is terrific.] I've also developed powerful spasms where my tongue becomes paralyzed. And most debilitating of all – even with a rolling walker, it's nearly impossible to walk. My best description is that I feel I'm in a moon bounce all the time. To top it off, it's extremely uncomfortable to be on my feet for any length of time; within a few minutes I develop extreme tightness and pain underneath each shoulder blade in my back. Every single part of my body seems stuck.
My tracheostomy comes with special challenges and losses. Having a collar (officially called a “trach tie”) around my neck all the time is extremely aggravating. Sometimes I consciously have to say “One moment at a time; try not to freak out over this thing that makes me feel like I'm being strangled.” I so appreciate when my mother massages my neck above and below the trach tie. Not being able to swim (my previous sport) is a huge loss. I would do anything to swim in the ocean again or just swim some laps at the pool. Not being able to hug anyone where my neck is vulnerable is a definite loss. Frequently the stoma at my trach site is so sore it hurts to hook up to the vent and even hurts to put on the speaking valve. I hate the trach even though I know it is saving my life. (One bonus is that I no longer have to worry about choking on my food – if I start choking, I can remove the speaking valve and breathe through the hole until I cough out the obstruction or it is removed by a doctor.) Often I have so much air leak around the tube that talking is really difficult – like talking while running. This is another “invisible” thing that many people don't see but is all too real and bothersome to me. Sometimes I have to just opt out of speaking because it's too difficult.
I feel like a ghost of my former self. Exhausted. Every corpuscle seems weak. Even with the ventilator at night, my sleeping is clearly compromised - I cannot remember a time in years that I woke up refreshed, no matter how many hours of sleep I've had. There is some question about how many hours per night I need on the ventilator – I am working on this. I wish being hooked up to the machine were more comfortable. It's a miserable set-up that is awkward at best, and painful at worst.
Another troubling aspect of my situation is how I am at risk of falling all the time. I have had several falls where I landed so hard I saw stars. Understandably, I'm nervous when I try and move around yet I'd hate to give up trying to move! Sometimes though I'm not sure how I keep on going. Bottom line, I am amazed to be alive.
Dr. Howard Fine told me years ago, “you have a chronic disease that is at times active and at other times inactive. You will never be cured.” His prophetic words were daunting, and as it has turned out, accurate.
Four positive things have come out of my cancer journey – I will write about each one:
- the love and loyalty of my family and friends and their continual outpouring of support
- my family's involvement in the Race for Hope, Washington DC every first Sunday in May
- the care and counsel of outstanding medical providers (coordinators, therapists, nurses, doctors)
- my communication with people all over the world via my website http://www.adultependymomabraintumor.com/
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 called!
- 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 walking problem!
- 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.
- Swallowing: 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, life-saving ventilator.
- 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
October 2015 (Updated 2/5/21)
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. 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)
Oct – Nov 2018
25 proton beam radiation treatments to my cervical spine at Georgetown (Dr. Jonathan Lischalk)
May 20 2019 – Mar 1 2020
Chemotherapy (Temozolomide and Lapatinib) (Dr. Mark Gilbert and Dr. BJ Purow and Dr. Kester Phillips)
May 15 2020 – July 2020
Avastin (Dr. Mark Gilbert and Dr. BJ Purow)
Aug 7 2020 – Nov 8 2020
80 MG Temodar plus fluvastatin (Dr. Mark Gilbert and Dr. BJ Purow)
Dec 8 2020
Spinal surgery - Laminectomy and Resection at T3 (Dr. Prashant Chittiboina)
Dec 15 2020
PEG tube #3 (Dr. Theo Heller)
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.
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:
- 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 (39).
- 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 lab (117).
- 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 remedies... (174)
- 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 years (218).
- 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).
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.
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]
Thought I'd post my recent letter to Dr. Fine:
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:
- fogginess like I'm in an airplane cabin
- headaches especially in the morning
- double vision
- hand-eye coordination
- stiffness, lack of fluidity
- spasticity (my left side)
- scalp and body tingling
- breathing, sleeping... my diabolical trach
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!
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."Alice Trillin kept the dragons away for over twenty years. She died in 2001 (http://www.newyorker.com/archive/2001/10/01/011001ta_talk_postscript). Send me an e-mail if you'd like me to share the actual article with you.
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.
"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. Hearing 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!
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.