New MRI and meeting the radiologist

Courtney here. I'm going to try as best I can to post some current happenings. Sorry in advance for the lack of elegance in writing skills (I know I'm pretty shabby compared to Jason). I hope I can get this out without being too convoluted and confusing. Here goes.

I followed my seizurologist orders and got another MRI this past Wednesday. I have been having some funky neurological activity and she was anxious to see what was going on in there, as were we. The oncologist had wanted to wait 3 months in between MRIs but after hearing my concerns the seizurologist ordered an MRI right away. In some ways it was nice to not have to wait a whole 3 months. Especially when the last MRI raised some eyebrows.

Afterwards we met the radiologist (Dr. Bedar) that we apparently will be working with. I was under the impression that they didn't do radiation on the brain anymore, because of MAJOR negative side effects, unless it was really a last effort at the end of treatment options or something. So I was surprised and a bit concerned when our oncologist told us he would like us to schedule an appointment with a radiologist. He explained that he thought it would be beneficial for us to talk with another doctor. That way we could hear what they have to say so that we feel like we are getting a second opinion and aren’t blindly following his advice, which he realized quickly that I was not too keen on. Don’t get me wrong, I really like the oncologist we were referred to. I was really impressed. But I think he could tell I wasn't totally thrilled about his opinion of treatment.

I came out of surgery knowing that I may have to get chemo and radiation and while I am not thrilled about it I figure, if it is something that I have to go through I might as well get it over with. Especially now with the majority of the tumor gone. My surgeon shared my view and even surpassed it by strongly advising to do chemo right away. The oncologist however wants to wait. I didn’t understand this at first. Why wait? Wouldn’t it be better to do the chemo now while we “had the tumor on the run”, as my brain surgeon put it? As we sat there in our last appointment with the oncologist it took him a couple of hours to help me see it clearly.

In the end I hesitantly agreed to postpone treatment. Here’s why. Apparently, there are no studies that show that it is beneficial to do chemo right away on my type of brain tumor. I would start off at 1 year of chemo, maybe longer. With chemo you poison your body in the attempt to poison the tumor. He explained that because of the potential duration of chemo, ie. 2 years, it would be really hard on my body and the chemo could potentially cause other health problems that would kill me before the tumor (I think some he mentioned were a form of leukemia and some sort of bone marrow disease). Yikes! He also wants to wait until there is more detectable tumor so that we can monitor how effective the treatment is (ie. How much it is shrinking the tumor).

Right now we know there is still tumor there because it is apparently impossible to get all of this kind of tumor. Even if an MRI doesn’t pick it up, there will still be tumor on a microscopic level. I didn’t really want to wait and give the tumor a chance to take off and grow more. I wanted to poison and zap it out of there and move on with my life! Oh, and I would definitely have to stop nursing Jocelyn. So it was with great hesitation but in weighing the not so great options, I could see why he advised me to wait and I, in the end, concented.

Dr. Bedar, the radiologist was really great. Again, very impressive and personable doctor. I have been so fortunate. I have such a great team of doctors to work with. Anyway, he looked at my MRI and what we learned was both good and bad.

The good part was that the MRI looked really clean. The bright area we had seen before looked better than the last MRI and it appears as if it might just be some tissue healing at the edge of the surgical sight. There is no other new detectable tumor growing yet and the sight looks pretty clean. Hooray! Whew!

As I asked the radiologist about my concerns with the difficulties of recovery and healing potential he looked me straight in the eye and said firmly. “Look, here is your MRI pre-surgery with all this tumor. Now, here is your MRI from today. The surgeon was able to take out just about all of the tumor….and you are still in tack…. It doesn’t get any better than that.” The gravity of his words reminded me that as frustrated as I am with the cognitive deficits that I now face, it could have been much, much worse. I went into the hospital not knowing if I would come back out. When I did 8 days later it was with my eyes squinted shut, a scarf wrapped around my eyes to block out the light that seemed like it burned my brain and in a wheelchair, and then a walker. So, really, I am doing much better and again, it could’ve been much worse. I continually am reminded to be grateful for what I have. And I am. It is a great blessing and nothing short of a miracle.

The bad part is the radiologist agreed with the oncologist about treatment. They both are of the opinion to just “wait and watch”. He could tell that I didn’t like hearing that at all. I wanted to be proactive about this. I don’t want to just sit around and wait for the tumor to come back! As I kept questioning him he stopped me and said. “OK, let me tell you what radiation is going to be like. Maybe it will help you to know.” He then went on to explain about the treatment… the mask they fit you in to stabilize your head during treatment, the hair loss on both sides of the head, both where the radiation goes in, on one side, and where it comes out on the other side (and no, it doesn’t come back), the definite negative cognitive deficits, especially memory and any number of other problems including dementia, how they would radiate not just at the surgical sight but most of the right side of the brain and some of the left as well. And he also stressed that apparently with radiation, studies have shown that it doesn’t matter when during the treatment you do radiation, it doesn’t change the overall prognosis. That last part kept repeating in my head. I was stunned to say the least. I was curious what this doctor would say when I asked him about the prognosis and he was much more blunt than the oncologist. He came right out and said somewhat flatly,” %60 of people with this kind of tumor are alive 10 years later”. I will likely be having chemo and radiation and more surgeries during that time to make it up until the 10 years and hopefully beyond.

While I am glad that the MRI looks good I am feeling a bit frustrated and discouraged by my options at this point. From a traditional medical standpoint, for now we “wait and watch”. Anyone who knows me, I think, knows that I believe there is a solution to everything! If you don’t see it in front of you, then you are not looking hard enough or you need to look at it differently or something. There is always a solution. So, now that I feel that I have reached a bit of a dead end, for now, with traditional western medicine I am turning my limited energy to finding other alternative sources of healing and just basic good physical and mental/psychological health. I'm not going to go down without a fight. I want to give myself the best chance possible. I know that attitude is also huge. Sometimes I feel that I do ok there but sometimes it is really hard. I mean, Isn’t it a bit of a paradox to say “hey, you have terminal cancer but you should be happy about it!”. Amazingly, sometimes I manage it and sometimes the weight seems too heavy to bear. It is a journey for sure and I know I am, unfortunately, only at the beginning. I have no idea how long it will be and as uncomfortable as the journey is I keep praying that it will be a long one. ;)

For now I just try to get by one day at a time. Sometimes one hour at a time. It is really hard not to project my current state into the future. I try my best to live in the moment and treasure each moment. I am learning the power of the word “YET!”. I add it on to what I say or think to give me courage…”I can’t see clearly YET. I not able to do this or that YET!” It helps. I read and reread my cards and emails from all of you to sustain my faith and hope of brighter days. I am trying to do my research. I am learning to meditate. I use it every night to help quiet my mind and try to sleep. I just finished reading a book, “ANTI CANCER. A new way of life” and I highly recommend it to everyone! It was fantastic. I keep a journal. In part just to try to document some of what is going on and I hope that if I look back over time I will see more clearly the accomplishments that I make. I have some quotes that I have printed up and have up around the house for inspiration. I’ll paste some below. I want to tell you how incredibly grateful I am for all of you! The service and love that we have been on the receiving end of has been amazing! I so appreciate all the help that has been given! Thank you for your prayers. I feel them daily. The power of prayer is amazing and sometimes it has been the only strand that I have had to hold on to. I love feeling that you care and are there. The peace that it brings is immeasurable. Thank you.


A few Quotes:

"If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do, you have to keep moving forward." ~ Martin Luther King Jr.

"You make your own happiness"

"The foolish man seeks happiness in the distance, the wise grows it under his feet."
- James Oppenheim, short-story writer, novelist, poet


The key to happiness

The secret to happiness is not to get what you want, but to want what you already have. If you think about it, most discontent grows from want. We want more stuff, more excitement, more pleasure. When we don't get those things, we're resentful and unsatisfied. Take away the want, and you take away the unhappiness. When your quality of life is tied to your desires, fulfillment is a shadow that escapes your view. Like trying to imagine a new color, the harder you look, the harder it is to see. Does this mean you stop setting goals and striving for a healthy lifestyle and better life? No. It means you can appreciate life regardless of the outcome. It means you can relish the pursuit while accepting the possibility of failure. It means you can still enjoy the ride. Happiness is not a destination--it's a way of life.

Stop living life for what's around the corner and start enjoying the walk down the street.
- Grant L. Miller, motivational guru

Rita Davenport taugh me, "What good are low hopes?"
Ryan Shupe taught me to Dream Big

―Christopher Reeve
"Worrying does not empty tommorow of its troubles...it empties today of it's strength." quoted Aunt Linda**

“Once you choose hope, anything’s possible.”