Monday, November 22, 2010

It's Okay -- Probably/Hopefully

"I have a brain tumor. It's okay -- probably/hopefully, but I have a brain "abnormality" that the neurologist believes is most likely a tumor. Saw it myself as clear as can be on the MRI films."

This was what I said to friends and family in an email that ultimately became the beginning of this blog. It was November 21, 2005. (Happy Blog-a-versary!)

I haven't told the rest of the story about that day, but I remember it well. It was a Monday, and we were awaiting word from my neurologist about the MRI and EEG studies that had been done on Friday. He had already called on Saturday to tell me to start taking anti-seizure medication, but had no other details. We had an appointment for Tuesday morning to go over these test results.

Then on Monday morning he called me with an urgent request to meet that day. Pick a time, and he would work me in. Other planned appointments and diagnostic tests had been cancelled. This was a highly ominous conversation, and I was obviously concerned.

Two conversations followed after I hung up. One was a phone call to my husband at work, so that he could arrange to accompany me. The other was back at my bedside, on my knees, to pray.

What occurred during my prayer was highly personal and sacred and comforting. I believe in the Comforter -- the Holy Ghost -- and knew that he was communicating with me in direct and immediate response to my prayer. Personal scripture with direct relevance to my situation was silently but clearly spoken to my mind. Specific words from long ago that had previously seemed unimportant and would normally go unnoticed, were recalled to my mind along with the impression that they were meant for this situation. And then there was a feeling of peace that cannot be adequately described. I rose from my knees knowing that I was under the watchful care of a loving Heavenly Father, and that whatever this was, I would be able to handle it.

Admittedly, I was also hopelessly naiive. The neurologist was very kind as he described the MRI results and the neurosurgery that would result. I knew that my grandfather had died from a brain tumor many years before, but this seemed different. I took solace in knowing that this was likely a primary tumor instead of a metastatic tumor, and that it was in an operable location. I had no clue that primary brain tumors are quite often malignant tumors, or that anything life-threatening was going on (other than the risks of surgery). I thought brain tumors were only a big deal when they were not operable. I was healthy and could surely endure neurosurgery. It honestly seemed like my biggest concerns were whether to continue with my upcoming hair appointment, and how to manage the logistics of neurosurgery so close to Christmas.

After coming home and digesting this news I started telling my parents. I remember both my mother and my father being very concerned, and weeping at the news. I figured they were overreacting because of my grandfather's experience. But it was so long ago! And this is different! I talked about it as matter-of-factly as if I had a cavity that needed to be filled. ("Hey, Dad -- wanna see the MRI film? Here it is right here!") I did my best to reassure them that I was going to be fine. You can see what I wrote at that time, if you go to my very first posts on this blog.

Obviously as the story began to unfold, my naivety gave way to reality. The seriousness of the situation began to sink in, and things beyond our worst fears were starting to materialize. It became overwhelming. However, once the pillars of ignorance and innocence fell, I did not collapse. The experience I had in my room prior to meeting the neurologist was a strengthening one that provided an important support column. It was the remembrance of this very personal answer to prayer, the words that entered my mind, and the unmistakable feeling of peace that accompanied it, that became the real source of my strength and optimism. Other similar experiences followed when needed.

I was taught long ago that there are counterfeits for everything except the peace that is the hallmark sign of the Holy Ghost. Within the presence of that peace it is impossible for fear and doubt to abide. There are many good feelings and emotions, and I've experienced those, too. Feelings of love and relief and joy and hope and wonder, and so on. But when there is spirit-to-spirit communication with the Lord through the Holy Ghost, it is unmistakably and undeniably set apart from these other feelings, and it becomes the only reliable source of confirmed truth. My greatest desire is to live long enough to help my children learn to access and recognize this for themselves.

What I came to know on that fateful day was and is still true, and it has sustained me throughout five years that began with "It's okay -- probably/hopefully" and remains standing at "It's okay -- definitely/surely--no matter what."

Sunday, November 14, 2010

Countdown to Blast-off

Yes, we passed another twelfth. Fifty-nine months since the word "malignant" was pronounced upon me. We're practically on top of that five-year survival mark that seemed like statistical zero at the time of diagnosis.

In fact, we're already five years from the time of my first "seize the day" episode. November 13, 2005, was the Sunday morning when I had a seizure while getting Emma dressed for church. We had no idea what had happened. Three days later, on the 16th, I had a series of episodes that led to a wrong diagnosis by an over-confident ER physician. Finally, on November 21, 2005, we saw an MRI scan with some kind of abnormality that looked like a tumor. We had no idea what it was until surgery on December 12 revealed that it was a malignant tumor. I knew then that I had cancer. And on December 14 our worst fears were realized when the cancer ended up being a grade IV glioblastoma. Statistically speaking, five year survival was considered a miracle at that time.

So we're counting down to December 12, when we can celebrate the completion of my "high-five" year of survival.

We're also counting down what I call the "blast-off". As in, my final radiation blast is tomorrow morning. And hopefully we'll get all that blasted glioblastoma blasted off into oblivion!

Sunday, November 07, 2010

Life Goes On

I have a new nephew! Caden James Ralston was welcomed into the world last week, to the delight of his mom, dad, brother, and sister.

A friend of mine lost her husband a few years ago. (Actually, I shouldn't say she lost him, because she knows very well where he is, which is a very comforting thing.) Anyway, as we talked in the days following his passing, she commented that when a person is born into this earth there is great anticipation and joy. And she felt certain that when a person is due to return home from whence we came, there is probably similar anticipation and joy for those who have preceded him and long to greet him.

During her pregnancy my sister-in-law had to deal with Braxton Hicks (false labor) contractions for several months, which thankfully did not result in premature birth or any complications. (Just maybe a great opportunity to play the guilt card later!) Caden was born healthy and beautiful and perfect...and at the right time for his mission in life. It was so nice to see him, fresh from heaven and ready to take on the world with a loving family surrounding him.

Meanwhile, I'm hoping to emulate his example of crossing the veil at just the right time...and not a moment too soon!

Home Stretch

I love it when my blog title has a double meaning.

I am home, stretching my muscles right now after Saturday's Brain Tumor Walk. It was a great event, raising over $1 Million for the National Brain Tumor Society, which puts a lot of money directly into research.

Our "High Five" team ended up with only three official members, because our daughter was too young to register. However, we still had many generous donors, and I appreciate each one!

We had a great time. Many volunteers donated food, drinks, and bounce houses to make it a fun event. The kids had a great time, and even had a chance to meet other children affected by brain cancer. Some of the children were feisty survivors themselves, and some had parents who were survivors. One of the highest fundraising teams had just lost their captain to a brain tumor the week before, and there were poignant "We Miss You, Mom" signs being carried by her children. One of the other teams donated part of their money to her team. It was a day filled with courage and support and lots of positive things being done about an otherwise awful situation. I always believe that God is so good, He can make good out of anything, and this was one example of how that happens -- especially when people are willing to help.

Five years ago I was training for a 5K run when I started having seizures. This year I thought I would train to run this 5K event when I ended up with a spine tumor. I decided to stop telling myself to train for 5K events...and I stopped preparing to run this one. I thought I would just sneak up on myself and see how much of it I could run. I ended up learning that I need to re-learn how to run! I think with everything that had been going on with my back and my legs and the foot drop thing...and the lack of running for so long...I just need to retrain some of my muscles. It just felt kind of weird to run, like I needed to remember how. I was stable enough -- didn't fall into the Trinity River that ran along the course -- but I did take it in walking and running intervals just to be safe. I would pick a landmark, like a tree or a pole and focus on running toward that. And then I would walk to the next item and try again. It worked out well, and I was happy with my time -- and the fact that I was doing this when last month I had foot drop and couldn't walk on my toes!

We are approaching the home stretch of the treatment game. Six more radiation sessions. Five more weekly Topotecan injections through the "oh my -- a reservoir." A few more rounds of Avastin. About a week left of nightly Temodar. Things are still very tolerable. So far bone marrow has been holding strong, which has kept me in the game. So far, CSF remains clear, with protein levels decreasing (a hopeful sign). Pain is also decreasing, which is another hopeful sign.
For some reason I have managed to lose some weight and spend a lot of time happily pulling clothes out of storage that have been mocking me for the past five years! (That's been my favorite side effect so far!) I still have my moments when I need a serious nap during the day -- and I remember from my first radiation adventure that the fatigue wall really starts to hit toward the end -- but still, there really isn't anything to complain about, all things considered. We'll get through this home stretch, and then we have a pause before we know the actual score. The Mets didn't have a great season on the field, and I'm praying that they will continue to lose here!