My favorite quote right now is from Anais Nin, “Life shrinks or expands in proportion to one’s courage”. So courageously saying yes to traveling from Washington State to Washington DC, zooming through airports in a scooter, with a catheter and a very little amount of energy, my husband Chuck and I traveled to Bethesda, Maryland to the National Institutes of Health where I participated in a week long study for early identification of Atypical Parkinson’s, Multiple Systems Atrophy.
I thought long and hard about traveling across country to participate in tests that really would not help me get better, but I am at heart a teacher, and as such I felt I wanted to help others be able to find the answers to their questions earlier than the years it usually takes to pin down some of these tricky atypical Parkinson’s diseases. I felt I could really do something to make a difference.
The entire experience was amazing. Every nurse was caring and friendly. Everyone I met, including Kay, a Chaplaincy Intern who prayed with me twice, seemed to be there because they had found their calling. And on top of the wonderful care, the food was great. You order like a restaurant whenever you want and they will bring up anything you want.
I am especially grateful for the amazing care I received from Dr. Goldstein, Dr. Cook and Nurse Practitioner Extraordinaire Jennifer Pope. If you have been diagnosed with some horrible neurological disease, these are the research team you want.
I lost count of the amount of times I was stuck with a needle. The first night I was there I ran through four highly trained nurses, who all were sure they could draw some blood, not even an I.V., just to get a blood sample. Finally the Pro from Dover (If you are not familiar with that phrase, please order up the movie Mash) arrived and bam, I had an IV, blood was flowing and all was well…for about 6 hours, which seems to be my I.V. max.
I had blood tests, a CT scan, and then 3 hours with my arms up over my head having a PET scan. When asked about my super human endurance to stay put for so long, besides the fact that I have an indwelling catheter, my answer was meditation. I spent that time at my beach cabin watching shore birds. I ask them not to have me to respond verbally when they were checking in, but I would raise my finger only. When I am deep and down I want to stay there.
Next day it was only 2 hours in the PET scan. Then I had a lumbar puncture. The hardest and most painful part of the week was when I had to stay flat on my back for 6 hours of excruciating back and hip pain. I am making an appointment with my orthopedic doctor this week. I should not have bragged about my amazing meditation abilities.
I also had a sleep study; I think the technician used Elmer’s glue in my hair. I could not wash it out the next day because I had 5 biopsies on my leg, I could not shower for 24 hours. More blood draws, an echocardiogram and then a vanilla shake. Really, I could order anything…sweet! It made my life with glued hair bearable.
They also did a DNA study, I will know way too much about my probable course, and any inheritable disease I could pass on to my family. Chuck has a lot of cancer in his family. When asked about if he thought he would inherit that family curse he said, “I inherited that thinking style, not the disease, how I think is up to me.” So in the middle of what appears to be so real I remember the great Shakespeare quote; “There is nothing either good or bad but thinking makes it so.”
Although the week ended with a meeting with Dr. Goldstein and his staff, we really will not have the full information for about a month; then it comes privately to me. Outcomes, specifics, dastardly facts; all mine to decide with who and if I share this thinking style.
I am still tired from the plane ride, but so glad to be home. I woke up the first morning back with my 4 year old granddaughter Nora’s face right up next to mine, “Can you draw me a doggie fairy Zuma?” I am home.
In two hours Chuck and I leave for the airport to begin our trip to the National Institutes of Health in Maryland. I am going to participate in a study to find methods so doctors can diagnose Multiple Systems Atrophy sooner than the amount of time it currently takes. I figure I had MSA for many years before my diagnosis, not uncommon for this disease.
I have been given a long list of tests that I will have this week. Some of these tests will help me to know more about my disease, where I am in the greater scheme of things and if there is anything I can be doing now to assist me in my quality of life.
Needless to say if I am writing this at 3:29 a.m. and we leave at 5:30 a.m. and I am a little nervous. Actually the whole airport routine and the plane ride itself is the biggest part of my sleeplessness. You can imagine going through security with 2 shoulder and 2 knee replacements, many pins and other metal bits in other locations, and catheter bag. Last time I flew I realized that I could have a full cath bag full of some explosive. Nobody wants to come near it although it could be filled with gas. (note to any bombers who are reading this, please disregard that idea). Security will quickly takes me aside, asking if I would prefer a private room for a personal pat down and look-see I know this is going to take some time.
Not long after 9-11 I was flying out of Newark, NJ. I had a jacket on and when the alarm went off indicating I had something metal around my shoulder, I, of course, start to reach up to show them my recent shoulder replacement, saying "I have a..." (Just for future reference, DO NOT DO THIS.) I was tackled by three nervous guards who thought I was reaching for a gun. I have learned to say, with my hands down, "Would you like me to tell you about where I have metal in my body?" It's about then that they begin steering me to a private room. Chuck goes through security, gets a latte and comes back 10 minutes later to pick me up.
I have told everyone that if something happens and I die this week it is all good. I am always in the right place. Just knowing I have said this to family and friends makes me realize I am a bit out of sync with what I am really feeling about this week of tests. I am sure I will come back with rave reviews of the hospital stay, the food, the trip and all the information I received from my DNA study and all the other tests, but the truth is I am more that a little scared. Just one of the planned tests would be considered a big deal, I have four days of poking and prodding. Stiches will be involved as well as IV's and tape that I will probably be allergic to. Really, a great trade off, but I will be happy to be home next weekend.
The picture I have with this post is the last page of my 2nd journal. I started writing and drawing in a journal since my diagnosis last August. When I start a journal I drew the last page first with the understanding that I actually could die before filling the journal. The first journal has a drawing of amanita mushrooms, the lovely red mushrooms with white dots, often drawn in children's books with fairies. (amanitas are a poisonous mushroom,and used by shamans and other knowledgeable folk as a hallucinogen). Under the mushrooms is a small chair with a long row of knitting, the ball of yarn rolling away like I just stood up. The words say "You just missed her".
The 2nd journal's back page is this milkmaid who has just spilled her milk. It says, "Sometimes things happen, don't cry over spilt milk, I love you all!" I am now starting my 3rd journal and am thinking about what the last page of this one will be since I have no intention of dying during the writing/drawing of this one. We will see what I come up with.
I think this is about enough for now, I have given a horrible recipe to bombers to get past security in airports and information about using a really poisonous mushroom for possible recreational drug use, great.
Life is wonderful, funny and unpredictable. Don't go licking any red mushrooms.
In grace and ease,
Welcome to my blog. Here I will write about all things Cathy.