My Notes and Thoughts
Some of the things I've learned over the years...
What does an actual ependymoma surgery look like?Reader beware - if you're squeamish, don't watch: http://www.youtube.com/watch?v=bU9pXJohg8E
Provocative essay by Pasquale Bruno about his GBM
Sensory System Problems
My wonderful physical therapist Val Gibson told me in 2010 something that rings true. She said, "Carol, No one else feels what you feel and sensory system dysfunction can be just as disabling as motor problems."
Beware of Levaquin
I took this antibiotic for infections around my trach stoma with no trouble several times but the last time I had all kinds of problems with it, including extreme calf pain, flu-like symptoms and intense stiffness. The worst thing is that the side effects lingered for weeks after stopping the medicine. There's a medical term for my reaction - it wasn't that I was allergic, but wow, I'd never take it again if I could avoid it!
What is an Arterial Blood Gas (ABG)?An ABG determines the level of carbon dioxide in your blood. They draw blood out of your artery and it can hurt quite a bit. I seem to have arteries that "roll" after they are poked so I am a "difficult stick." I've tried drinking a lot of water beforehand but it doesn't seem to matter - what matters is the skill of the person drawing the blood! They'll have the results in a matter of minutes. With practice, I'm getting the hang of diaphragmatic breathingWikipedia explains: "Diaphragmatic breathing is the act of breathing deep into your lungs by flexing your diaphragm rather than breathing shallowly by flexing your rib cage. This deep breathing is marked by expansion of the stomach (abdomen) rather than the chest when breathing. It is generally considered a healthier and fuller way to ingest oxygen, and is often used as a therapy for hyperventilation and anxiety disorders." When I master this breathing technique I can achieve a peaceful feeling / a relaxation response. I recommend Ram Dass' documentary called Fierce GraceHow to find meaning in your life after a physical calamity? From someone who thought he knew everything / felt everything (you can argue about the roots/reasons for this hyper self-awareness), but he realized there could be even more for him post-stroke. He writes: "The stroke [like a brain tumor, is a path]. It's like a whole new incarnation. There are qualities in me that never would have come out. I'm at peace more now than I ever have been. The peace comes from settling into the moment. This moment is alright. Now, this moment is alright." He always enjoyed driving manual transmission cars. He lost the use of his right hand and had other problems that made it impossible to drive. He came to understand that when his caregiver drove him, he could either be a [frustrated, unhappy] non-driver or "someone with a chauffeur." Now, that's getting it!
There is a way to try and prevent a choking episode...About 18 months after my first surgery, I discovered that I could dislodge a piece of food that was going to cause me trouble. It's hard to explain, but it's something I do with my throat and cough that brings the food out of my throat. My tongue is not very flexible anymore so I can't rely on it to do this. Plus, it wouldn't reach as far down as I need to re-arrange the food. If you're a patient, experiment with this - try clearing your throat with a lot of force - that's the best way to describe my technique. It's not a pleasant sound, but it works - and the long fit of coughing (or absolute choking) that would come if I didn't do this step would be far louder and more disturbing to my fellow diners. You and your family should know the Heimlich ManeuverBefore my permanent trach, I was saved by the Heimlich Maneuver a half dozen times. Each time, I had no air in my windpipe because food was lodged there. This is a terrifying feeling. The culprits were roasted potato, chicken, banana, ravioli and soft bread. Another time was chicken and another was fried shrimp - the tiniest piece! Here's the website which explains how to do this life-saving procedure: http://www.heimlichinstitute.org/maneuver.html. Remember too that if you have habitual trouble swallowing, don't get too hungry, slow down, take small bites! And try not to eat alone! Taking pills when your swallow is diminishedYou don't have to grind up your pills in order to get them down. Even with my diminished swallow, I can swallow pills by putting them in foods such as ice cream, yogurt, cottage cheese and applesauce. If I'm away from home, I carry a small container of applesauce with me in case I need it. Lots of practice means I can take my pills in almost anything - including cake and brownies! The human body's ability to healI believe that the body isn't content with imbalance or sickness and tries to return to "normal" - this belief has helped me persevere through all of the pain and unpleasant sensations that have plagued me since 2000. After my first operation, I could not move my tongue outside of my mouth or around in my mouth, a dramatic deficit- with therapy and time I fortunately got most of the movement back. After the third operation, my tongue is hard to move once again, history is repeating itself, though not to the same degree. Ice creamIf you like ice cream and you want to keep your weight up or you want a food that is easy to swallow, dive into the first container of ice cream that your caregiver brings you! It is a relief when I eat ice cream because I know that I will not choke on it. Its consistency is ideal, not to mention its ability to satisfy my sweet tooth! What is dysarthria?Dysarthria is defined as a difficulty in articulating words due to disease of the central nervous system. My first surgery left me with dysarthric speech that persists today. Sometimes I sound like my voice and tongue are under water or as if I have a hearing problem. To make my speech more precise, I try to speak slowly and use a slightly louder voice. I also speak better if I'm more rested and if I'm standing up straight. The importance of strength trainingI lost nearly 25 pounds leading up to and following my first surgery and left the hospital at 92 pounds. I was always into fitness but since 2000 I have been dedicated to it. Now I work out for life - that's a strong motivator. My speech therapist told me after the first surgery that I should get my body as strong as possible whether or not I had a tumor recurrence. If I did, then my body would be stronger and could deal with it better. She was right. I'm not "hard-core" but I have tried hard to build muscle tone and I'm convinced that my muscle strength helped me get through my second and third surgeries. I am a regular at the awesome body sculpt and body pump classes at Gold's Gym in Sterling - Linda Carr is the best teacher - she keeps an eye on me and motivates me - I found I can do a lot of the class sitting down and still get quite a good workout. Myofascial release therapyIf you've never heard of this, read on because this technique is amazing and it works! First you need to know that your entire body is covered by a layer of tissue under the skin called fascia. It covers every organ, as well as every muscle and every fiber within each muscle. Tightness in the fascia - anywhere in the body - can cause pain anywhere in the body. The therapist gently stretches any tight tissue using slow "passes" over the target area. Working around scar tissue is one thing my therapist did which helped tremendously. I started to move freely only from this therapy. I have continued it all these years. Myofascial release is not massage. It is more subtle - it usually feels good and it loosens up your body effectively. It may be covered in part by insurance as an adjunct to a physical therapy program prescribed by your doctor. The will to moveMany times in the hospital I believed there was no way I could even raise my arm, let alone move my body. Sitting up caused me to faint and required more energy than I could muster. I still can't believe how much pain I endured and how decimated I felt. It was so critical that I had terrific therapists making me try, and I also had the companionship of my family and friends which motivated me to try in order to make them happy. These two forces - from outsiders and insiders - drove my recovery and got me out of the hospital. I know some of it came from inside me, but without the encouragement and occasional "tough-love" it would have been easier to give in. My wonderful friend Ouida Barclay, a respiratory therapist, told me one day in the hospital: "Carol, you have two choices, try and get up or continue to lie there and become a vegetable, because I guarantee if you don't make your body move, then it will not fight you - it will happily just give up. You have to take control." Why are there so few statistics on ependymomas?I have believed this for the past six years - and I believe it today - that there are simply not enough adult patients to provide accurate statistics on recurrences and survival. To add to the difficulties, each patient has a different story: every case is slightly different - age, health, gender, size of tumor, exact location of tumor (ventricle, brainstem, frontal lobe), exact cellular structure, skill of the surgeon, how entrenched the tumor is or infiltrated into the critical brain material.... and don't forget the variable of exactly what kind of treatment the patient had on the first occurrence- 100% surgical resection - 90% - 95%; lots of radiation or less radiation; chemo or no chemo. I try not to put a lot of emphasis on the few statistics available. There are many variables that enter into the recurrence statistics and I don't think there is enough data out there to really be certain... The one statistic I am sure of is mine! Paul Zeltzer MD in Brain Tumors: Leaving the Garden of Eden writes about this in a similar way: "While it is true that some types of brain tumors have low survival rates, not everyone with that tumor type will die of it." He reminds us that prognosis statistics are for groups of people. No physician knows ahead of time who the specific survivor(s) will be. He then writes, "It might as well be you" (43). HydrocephalusThis is a condition when the ventricles of the brain fill with fluid and the pressure becomes too great. When I had this in the fall of 2005 it was terrible. My symptoms were the following: whenever I stood up I'd get an excruciating headache (I can't even describe how much it hurt - hydrocephalus headaches are notorious) and I also could not walk in a straight line. I literally lurched. My MRI clearly showed the expanding ventricles; happily, a VP shunt (October 4, 2005) completely fixed the problem. I am grateful to Mike McCool for getting me to Dr. Jane as soon as possible so I could have this procedure. I don't think I could have gone another day with the hydrocephalus, that's how bad it was. VP stands for "ventriculoperitoneal" - meaning a catheter drains fluid from the brain's ventricles down into the abdominal cavity. To add to my feeling that I am one big science experiment, the shunt came with three new incisions and scars: two on my head and one on my abdomen. The catheter pokes out of my scalp which makes it hard to comb my hair or sleep on that side. The biggest complication I have from the shunt is when it rubs against my intestine which can really hurt to the point that I can't stand up straight. Regular digestion is one key to preventing this kind of pain. Maybe this tidbit will help someone else!