I would wake up, stare at my feet and have to command them to move. I did this with my outside voice, actually saying, "right, left, right, left, right, left." I'm sure Ted wasn't thrilled with my morning conversations with my feet. It was the first time in his life he'd been able to sleep beyond the crack of dawn, but sometimes that's all I could do to force myself to go to work.
The thought of leaving his side for even a minute, saddened me. I kept hearing the ticking time bomb and didn't want to be cheated out of a second with him, but eventually reality slaps you in the face and you have to learn to cope, and as weird as this is to say out loud, we are happier now than we've ever been.You have a choice to give up and expect the worse, or keep moving forward. We kept going. I of course expected the worst, and Ted ignored all the doom and gloom prognostications, and he eventually taught me to do the same. I now only worry when I have to.
We did three key things that I think helped us emotionally and physically. We made exercise the center of our days, we began exploring the beautiful world outside our doors, and we got involved in volunteer programs.
Each day we pushed a little farther. Immediately following Ted's surgery, he was only able to walk the hospital hallways, and this required assistance, but by the end of week one, after his return home, he could go around the block. Within a month he was able to walk 45 minutes. He'd have to sit sometimes but that eventually went away too.
Our goal each day is to walk five miles. During the school year when I'm teaching, we sometimes only get three miles in, but during the summer break we try to walk six to eight miles a day. Our dogs are the best athletic coaches you can get. They demand we take them on at least one long walk a day or they threaten to chew our legs off.
|Silvi is the schnauzer and Morgan is the Saluki lab mix. Sadly our little Silvi passed away at the ripe old age of 16 and a half on Sept. 9, 2011. I never thought Ted would be there to say good-bye to her. |
We have made walking and hiking the focus of our days and of our vacations. When I started the bucket list, I made sure to chose places with great walks. One of our most memorable walks was during a visit to New York City. We put 12 miles on that day because we walked the perimeter of Central Park. The park is about seven miles around. At least that's what our pedometers told us.
In 2008, we took a fantastic hiking vacation to the Cotswold's in England. We made reservations through a company I found online. They chose the hotels and bed and breakfasts. Each day they collected our luggage from our lodging stop, and we'd hike to the next night's accommodation with a small day pack, and if we timed it right, we'd find a local pub about halfway between each day's journey and stop for a quick bite and a pint of beer or a glass of wine. Just enough fortification to get us to our next destination.
Each day's journey was anywhere from 8-12 miles, with the exception of the first day. That was a toe pincher. They gave us a local map with directions that included lots of left turns at churches and cow pastures. I think the cartographer drank a lot of ale. What was supposed to be a nine mile day became an 18 mile trek that included electric fences, streams, and over zealous cows. I'm used to fearing lions and bears in my part of the world. Who knew sweet little cows could accidentally kill you.
|Stratford Upon Avon 2008|
|Ted - Silverfalls Trail|
Finding Cheap, Local FunNo matter where you live in this world there is someone desperate to entertain you, and when you are on a cancer budget in the the United States, life can seem pretty desperate. Much of your time and energy is spent in doctors' offices spending money you can no longer make.
So when is there time for fun, and how can you afford it? Keeping entertained was a necessity. We needed distractions, so we started out by purchasing a weekly entertainment section of our local paper and began circling weekend events. We turned it into a game. We HAD to circle at least one thing to do each weekend or there would be dire consequences. We never declared what the consequences would be. After all, our life was a dire consequence and anything worse than what we were going through would be too scary to say out loud. The only other rule was to elminiate anything we couldn't afford, which often times left us attending events that required donations of canned food as the admission price, and I must say, those were some of the most memorable things we did.
Broadway productions require money, but a local miniature train convention only requires a can of corn. The audience at those events is almost as entertaining as the doll sized trains. Imagine a room full of middle aged men and a few nine year old boys watching a Lionel train orbit a replica of a Normal Rockwell painting about ten times in an hour, and you certainly feel like you've gotten your money's worth.
Free wine tasting anyone?
Turns out we live in wine country. Ted and I weren't wine drinkers when this all began but after a trip to NYC, we soon learned to enjoy what our corner of the world had to offer. While dining at multiple restaurants in Manhattan, we noticed a large number of wines from Oregon. If it's good enough for the sophisticates of New York, then by gum it must be good enough for us, so with little effort, we typed wineries into Google maps and discovered a gazillion of them. (Keep in mind, we hadn't lived in the Pacific Northwest very long when Ted got diagnosed.) There are multiple locations in our area that offer free or low cost wine tastings, so we do. Not only have we made really good friends that way, we've also learned a lot about wine.
Even if you aren't lucky enough to live in wine country, challenge yourself to do something you don't normally do. Even if you or a loved one doesn't have cancer, try the entertainment challenge. Set a budget (even if you are stinking rich) and force yourself to attend one event every weekend. Sometimes the lower the budget, the more entertaining. What started out doing one event per weekend, which turned into a very rich social life, so much so, it's overwhelming at times, but in a good way.
We did things I never thought I would do, and we seem to go through stages. For about a year, we joined a bowling league. If you knew me personally, you might have a hard time believing that one. I still don't. We held a brain cancer fundraiser at one of the wineries. We've paraglided and zip trekked. We even took tap dancing lessons. Almost every year we now return to Carlsbad, CA to celebrate our wedding anniversary. (Fun factoid- Ted and I were married on a reality TV show back in the day when they were still new, 1996. And no it wasn't Bridezilla! We were married on a show called, "A Wedding Story," in The Carlsbad Flower Fields. We love Carlsbad, and if we had a bazillion dollars, we'd move back. )
Ted and I have spent our lives working in the "helping" professions, so volunteering is nothing new to us. Almost everywhere we've ever lived, we've done some type of volunteer work, but since D-Day, it has taken on a new meaning. We don't do it because we think there will be some kind of great reward in an afterlife; we do it because we are driven to ease others' pain. You would think that if your life is filled with shit that you would want to avoid it as much as possible, but there is something very life giving and rewarding when you help others. It can be a huge distraction to your own problems. I remember when Ted was first diagnosed; my friends didn't want to tell me their problems. They were ashamed because they thought their problems were petty in light of what we were going through, but I begged them to tell me. I needed an escape from my own trouble.
Ted is a licensed physical therapist and still does volunteer therapy for destitute patients. He also volunteers at the VA. I teach adult basic education, which means that my students are often times in dire straits. My students often include the homeless, about to be homeless, recovering drug and alcohol addicts, and victims of domestic violence. Off the clock, I volunteer for multiple organizations that work with animals, victims of domestic violence and cancer patients. I was compelled to write this blog because I wanted to give people hope. I didn't want them to suffer the way I did when I first looked this awful type of cancer up on the Internet.
Advice can sound so cheesy, so I won't say, "Go out and live life to the fullest," but I will say, try something new.
You are an inspiration. I just stumbled upon your site and I think it is wonderful! ThanksReplyDelete
Having just spent half an hour scaring and upsetting myself (why DO I do that?) searching for info about GBM Grade IV, I decided to look at your site for some comfort. Thank you so much for having this site there for us. Time for me to STOP searching and start living!ReplyDelete
I am so glad I found this site. We live in the Pacific NW also, both of us are natives of Tacoma WA. My husband's cancer was just found on Halloween. Inoperable, but now on his ninth day of radiation & Temodor. You are an inspiration. He received the very bleak 12 month with treatment prognosis. I need stories like yours now.ReplyDelete
I do get updates on your travel.ReplyDelete
And how are you now, I am so blessed to have found this page, -because my son back in my homecountry has a Astrocystro gr.3 . He is very possitive about the thing in his head. He made me a grandmother for the 2.nd time after dx and op. a week later Simon is born. I live in Canada, but we are on our way back to Denmark so we can be close.
But i follow your link ...and you give me hope
I have been conversing withTed for a month or two now. My daughter Erin, 25, has Glioblastoma IV as did Ted.ReplyDelete
It helps so much to to talk about what she and I and her step-mom are feeling. Ted has given me a lot of insight as what to expect, feel etc. Very awesome and informative site ! Thanks to Ted and Katy.
So nice to stumble across something postitive for this horrid disease. My mother has recently had surgery for GBM, she is 60y/o. I am more frightened of the chemical warfare (chemo/radiation) at the moment, just having no idea of what to expect. I feel I might have to get some sort of excercise/walking regime up and running for her after reading your website. She is very tired from surgery still. (4 weeks ago), but some is better than none!ReplyDelete
Thanks for the positives, all the best Ted, -from Vicki in NZ - we have loads of waterfalls around here!
I am glad I came across your blog. My mom has been diagnosed with GBM, its around a month now. We are yet to start the standard treatment of Radiation and Chemo. We have been frantically trying to for all the clinical trails and nothing has been working out due to the location of the tumor. Surgery has been ruled out. My mom has always been a healthy person with regular exercise and clean eating. She is 72 years old.ReplyDelete
My dad is 76 years and is devastated and does not want to take the standard treatment route as the doctors timeline of survival is very short.