"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."
Monday, November 22, 2010
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!
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!
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!
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!
Sunday, October 31, 2010
This One's for Charlie
Tomorrow is my last chemo day with Charlie before she moves on to a new opportunity as an ER nurse closer to her home. Charlie has been my chemo nurse during the Avastin days and celebrated with me on graduation day in 2008, and we both foolishly lamented how we missed each other during those long stretches between MRI scans. And she's been here to get me started on this latest round of Avastin, transitioning me to a new pair of caring hands.
Charlie also introduced me to Coconut M&M candy, which may actually cure me. It's good stuff -- like an Almond Joy in a candy shell!
I just can't say goodbye to Charlie without thinking of one of my favorite Michael McLean songs, called "One Heart in the Right Place":
Charlie also introduced me to Coconut M&M candy, which may actually cure me. It's good stuff -- like an Almond Joy in a candy shell!
I just can't say goodbye to Charlie without thinking of one of my favorite Michael McLean songs, called "One Heart in the Right Place":
There's no telling how much a sunrise means to the one who had a terrible night;
And there's no telling how much a hand to hold means to one whose being led to the light.
And no one can tell, though at times they might try what it means to have one friend that's been true;
So I guess there's no telling you just how much one heart in the right place can do.
There's no telling how far ones eyes can see when someone's vision can inspire a song
And there's no telling how big a dream can be for the one whose learned to never think small
And no one can tell though at times you might try what another person's love means to you
So I guess there's no telling you just how much one heart in the right place can do
But there's been a heart as big as it's dreams that's blessed us all for so many years
It's been in all the right places at all the right times and it's changed everyone of us here.
There's no telling how much that sunrise meant to the one who had a terrible night
And there's no telling how much a hand to hold has meant to someone whose been led to the light
And no one can tell though at times they might try what it means to have been touched by someone
So there's no way of telling you just how much your heart in the right place has done
We wish we could tell you now just how much your heart in the right place has done
Trunk or Treat
(We have a friend who said, "I choose trunk." Small pause for a chuckle here.)
Saturday was our annual Trunk or Treat event at the church parking lot, where everyone passes out candy from their cars. Despite our family tradition of strategic planning long in advance -- and despite my earlier blog with potential costume ideas with the Ommaya reservoir -- we ended up going with something unexpected.
I should say some THINGS unexpected...like THING ONE and THING TWO from The Cat in the Hat:
And Jared and I decided to go as one of the great movie couples of all time: Napoleon Dynamite and Deb. (Deb's side ponytail combed nicely over the Ommaya reservoir!)
It was fun -- to stay in character, we went to Sonic afterwards and ordered tots...
Fantastic Friday
Life moves fast -- especially when staring mortality in the face -- and if we watch closely enough we can capture some precious moments along the way.
Friday was one of those spontaneous precious moment days. My husband ended up being able to take the day off, and with the kids in school we had an all-day date. I relieved my angel driver for the day with full honors and blessings, and Jared drove me down to the medical center for my Friday zip-zap. He was able to meet my friends Terry and Janice (pray for them as they go through their radiation treatments) and some of the radiation technicians.
The rest of the day was filled with other tasks, and we were able to quickly turn a lot of "to-do's" into a lot of "Ta-Da's!" and even squeeze in a quiet lunch together before school got out.
It's kind of funny; other than lunch, the list of activities is pretty boring in regular retrospect. However, in my very non-regular retrospect, I think this was one of the most romantic days we've spent together. It reminds me of our dating years, when we were best friends and getting things ready for his mission and my schooling.
This is one of the gifts of the cancer experience. Before it, I wonder how many fantastic Fridays we've breezed through without stopping to notice and give thanks.
Friday was one of those spontaneous precious moment days. My husband ended up being able to take the day off, and with the kids in school we had an all-day date. I relieved my angel driver for the day with full honors and blessings, and Jared drove me down to the medical center for my Friday zip-zap. He was able to meet my friends Terry and Janice (pray for them as they go through their radiation treatments) and some of the radiation technicians.
The rest of the day was filled with other tasks, and we were able to quickly turn a lot of "to-do's" into a lot of "Ta-Da's!" and even squeeze in a quiet lunch together before school got out.
It's kind of funny; other than lunch, the list of activities is pretty boring in regular retrospect. However, in my very non-regular retrospect, I think this was one of the most romantic days we've spent together. It reminds me of our dating years, when we were best friends and getting things ready for his mission and my schooling.
This is one of the gifts of the cancer experience. Before it, I wonder how many fantastic Fridays we've breezed through without stopping to notice and give thanks.
Thursday, October 21, 2010
Checkup
I got the full treatment today: radiation, Avastin, Topotecan, and Temodar -- and a neuro test! Throw in a manicure and a robe, and I would have just written it off as a day at the spa.
I remembered "fox," "popcorn," and "tree." I spelled WORLD backwards and forwards, but didn't get asked to count backward from 100 by sevens. (I just naturally start doing that when I see Vanessa coming my way!)
Labs look great: I still have bone marrow, chemistry looks good, and so far no tumor cells are showing up in the CSF. I'm still in the game!
I actually had reflexes in my legs, which is something kind of new. Even when I was a kid I wondered why the doctor always banged on my knee with a hammer, because I never had a kick reflex. Maybe this is a new skill, like when I became better at sightreading after brain surgery!
I managed to lose my foot drop and aced the catwalk portion of the exam, walking straight lines on my heels and on my toes and proving once again that I am (and always have been) stone sober. I'm hoping this is a signal that the underlying cause of nerve problems is being defeated quickly.
We'll know more soon. I'll be a five-year cancer survivor by the time we know how this plan of attack has been working.
But what an interesting date to look forward to. I go in for a brain/spine MRI on December 14, 2010, which is the fifth anniversary of the day my neurosurgeon confirmed the word that changed my life: "glioblastoma." I meet with Dr. Fink for a verdict the next morning, which is the 5th anniversary of my Grade IV Glioblastoma blog post. (That post has the most comments of any on my blog.)
I remembered "fox," "popcorn," and "tree." I spelled WORLD backwards and forwards, but didn't get asked to count backward from 100 by sevens. (I just naturally start doing that when I see Vanessa coming my way!)
Labs look great: I still have bone marrow, chemistry looks good, and so far no tumor cells are showing up in the CSF. I'm still in the game!
I actually had reflexes in my legs, which is something kind of new. Even when I was a kid I wondered why the doctor always banged on my knee with a hammer, because I never had a kick reflex. Maybe this is a new skill, like when I became better at sightreading after brain surgery!
I managed to lose my foot drop and aced the catwalk portion of the exam, walking straight lines on my heels and on my toes and proving once again that I am (and always have been) stone sober. I'm hoping this is a signal that the underlying cause of nerve problems is being defeated quickly.
We'll know more soon. I'll be a five-year cancer survivor by the time we know how this plan of attack has been working.
But what an interesting date to look forward to. I go in for a brain/spine MRI on December 14, 2010, which is the fifth anniversary of the day my neurosurgeon confirmed the word that changed my life: "glioblastoma." I meet with Dr. Fink for a verdict the next morning, which is the 5th anniversary of my Grade IV Glioblastoma blog post. (That post has the most comments of any on my blog.)
Sunday, October 17, 2010
A most amazing, wonderful day
Friday was a most amazing, wonderful day in so many ways!
I remember waking up and feeling very rested and comfortable. As always, I'm just happy to wake up, period. But I realized that I had rested well, and that I was in a comfortable bed in a comfortable bedroom in my home. My husband was with me, and I was madly in love with him. My children were upstairs sleeping, and I was so happy to know that they were part of our family. Together, our family knew and relied upon our Savior, Jesus Christ, and were grateful for the knowledge of Him.
I rolled out of bed to say my prayers, and I noticed how comfortable it felt to kneel without screaming pain in my back and legs. The gratitude list began easily and went long.
Friday had an unusual schedule. Two parent-teacher conferences. One radiation treatment downtown. School holiday for the kids, followed by a Primary activity in the afternoon. And ward temple night with my husband. We decided to try and squeeze in a quick trip to the state fair, just to make it a fun family day. It was an ambitious but fun venture, and we were blanketed with tender mercies to make it an especially memorable and happy day.
The parent-teacher conferences ended up happening back-to-back instead of hours apart, making it possible for both to be completed before I had to run to my radiation appointment. Both teachers had excellent reports; both kids are doing very well, despite the new chaos in our family.
Traffic was uncharacteristically easy, and I emerged early from radiation just as my husband and kids pulled up to take me to the state fairgrounds a few miles away. We arrived just before the gigantic Texas Star ferris wheel opened for the day, and were the first ones aboard. I'm not much of a ferris wheel person, but this one was fun -- I felt as though we were on top of the world for a brief moment.
We attend the state fair once a year, and have our own little family list of favorite "must-do" things. This time they all fell perfectly into line, and with minimal crowds and beautiful weather we just plain had fun. Em was able to do her butterfly ballerina dance, and Jake was able to be the lion tamer in the Backyard Circus. We indulged my husband's favorite car show exhibits, we did the DAR Museum and the Little Hands on the Farm and sampled the disgusting but cool fried offerings that make corn dogs seem passe.
This year Jared tried both fried Frito Pie and fried pizza. (Jake helped him with the latter.) The kids and I had fried PBJ & banana sandwich along with some grilled corn and a caramel apple. Thanks to the local dairy sponsors, we had plenty of milk to drink.
Normally excursions like this involve at one grumpy/whiny/overtired episode before the day is through. With so much going on, it can get exhausting and overwhelming for kids and adults alike. But it wasn't like that this time. It was just a really happy day! I kept sitting back and hoping I was imprinting these memories into (what's left of) my mind, and hoping even more so that they were being imprinted into the memories of my family members. I want this to be remembered as a happy time for all of us, being able to spend time together just enjoying each other.
We left for home having done all that we set out to do, and having plenty of time to prepare for the events ahead of us. Traffic was easy on us again, and I continued to marvel at what a blessed, easy day this was. And on the horizon was a chance to go to the temple that evening. It just couldn't get better than this!
For a fleeting moment, the thought crossed my mind that it was such a good day -- if it had been my last day on earth I couldn't have imagined a better one. (Unless, of course, we had each been about fifty years older that day!)
As my husband and I left for the temple, it occurred to me that I had not taken any anti-nausea medication that evening. It was not something I would typically do, except that between the Topotecan and the radiation hitting so close to my stomach I am more prone to nausea. I am normally premedicated for nausea when I receive Topotecan, but this was the following day, when that would typically wear off. Since I had not yet had a major nausea problem, I figured I would probably be okay.
I wasn't. I didn't figure in the "fair factor." I ended up having to excuse myself during our temple session to avoid catastrophe. It was disappointing to feel so physically awful, and to miss this opportunity that evening. All was fine. Temple workers were swift and kind in caring for me. I'm sure my name was added to the prayer roll by many of the others in attendance that day!
The rest of the evening was rocky as I fought to keep down that evening's chemotherapy, even after taking my anti-nausea medication. It was a long night. But I made it! It was still a most amazing, wonderful day. My temporary physical setback was no need for alarm. God hadn't stopped pouring tender mercies on me that day. I had merely enjoyed my amazing, wonderful day so much, I overdid it!
Kneeling by my bed that evening I had an even longer list of things to be grateful for that day. (Including the fact that a fried peanut butter/jelly/banana sandwich is out of reach for at least one more year!)
I remember waking up and feeling very rested and comfortable. As always, I'm just happy to wake up, period. But I realized that I had rested well, and that I was in a comfortable bed in a comfortable bedroom in my home. My husband was with me, and I was madly in love with him. My children were upstairs sleeping, and I was so happy to know that they were part of our family. Together, our family knew and relied upon our Savior, Jesus Christ, and were grateful for the knowledge of Him.
I rolled out of bed to say my prayers, and I noticed how comfortable it felt to kneel without screaming pain in my back and legs. The gratitude list began easily and went long.
Friday had an unusual schedule. Two parent-teacher conferences. One radiation treatment downtown. School holiday for the kids, followed by a Primary activity in the afternoon. And ward temple night with my husband. We decided to try and squeeze in a quick trip to the state fair, just to make it a fun family day. It was an ambitious but fun venture, and we were blanketed with tender mercies to make it an especially memorable and happy day.
The parent-teacher conferences ended up happening back-to-back instead of hours apart, making it possible for both to be completed before I had to run to my radiation appointment. Both teachers had excellent reports; both kids are doing very well, despite the new chaos in our family.
Traffic was uncharacteristically easy, and I emerged early from radiation just as my husband and kids pulled up to take me to the state fairgrounds a few miles away. We arrived just before the gigantic Texas Star ferris wheel opened for the day, and were the first ones aboard. I'm not much of a ferris wheel person, but this one was fun -- I felt as though we were on top of the world for a brief moment.
We attend the state fair once a year, and have our own little family list of favorite "must-do" things. This time they all fell perfectly into line, and with minimal crowds and beautiful weather we just plain had fun. Em was able to do her butterfly ballerina dance, and Jake was able to be the lion tamer in the Backyard Circus. We indulged my husband's favorite car show exhibits, we did the DAR Museum and the Little Hands on the Farm and sampled the disgusting but cool fried offerings that make corn dogs seem passe.
This year Jared tried both fried Frito Pie and fried pizza. (Jake helped him with the latter.) The kids and I had fried PBJ & banana sandwich along with some grilled corn and a caramel apple. Thanks to the local dairy sponsors, we had plenty of milk to drink.
Normally excursions like this involve at one grumpy/whiny/overtired episode before the day is through. With so much going on, it can get exhausting and overwhelming for kids and adults alike. But it wasn't like that this time. It was just a really happy day! I kept sitting back and hoping I was imprinting these memories into (what's left of) my mind, and hoping even more so that they were being imprinted into the memories of my family members. I want this to be remembered as a happy time for all of us, being able to spend time together just enjoying each other.
We left for home having done all that we set out to do, and having plenty of time to prepare for the events ahead of us. Traffic was easy on us again, and I continued to marvel at what a blessed, easy day this was. And on the horizon was a chance to go to the temple that evening. It just couldn't get better than this!
For a fleeting moment, the thought crossed my mind that it was such a good day -- if it had been my last day on earth I couldn't have imagined a better one. (Unless, of course, we had each been about fifty years older that day!)
As my husband and I left for the temple, it occurred to me that I had not taken any anti-nausea medication that evening. It was not something I would typically do, except that between the Topotecan and the radiation hitting so close to my stomach I am more prone to nausea. I am normally premedicated for nausea when I receive Topotecan, but this was the following day, when that would typically wear off. Since I had not yet had a major nausea problem, I figured I would probably be okay.
I wasn't. I didn't figure in the "fair factor." I ended up having to excuse myself during our temple session to avoid catastrophe. It was disappointing to feel so physically awful, and to miss this opportunity that evening. All was fine. Temple workers were swift and kind in caring for me. I'm sure my name was added to the prayer roll by many of the others in attendance that day!
The rest of the evening was rocky as I fought to keep down that evening's chemotherapy, even after taking my anti-nausea medication. It was a long night. But I made it! It was still a most amazing, wonderful day. My temporary physical setback was no need for alarm. God hadn't stopped pouring tender mercies on me that day. I had merely enjoyed my amazing, wonderful day so much, I overdid it!
Kneeling by my bed that evening I had an even longer list of things to be grateful for that day. (Including the fact that a fried peanut butter/jelly/banana sandwich is out of reach for at least one more year!)
Tuesday, October 12, 2010
Another Twelfth!
And this one makes 58 months of cancer survival! We're still pushing our way through this HIGH FIVE year, despite this new twist in the story.
Sunday, October 10, 2010
One week down
The first week of shock and awe is behind me, and it wasn't too bad at all. Only on Friday did my body finally say, "Hey...I'm tired!!!!" I slept early on Friday and most of Saturday.
Monday through Friday was radation and oral Temodar chemotherapy. My favorite part was riding down to the medical center with friends who gave me limo service. We had lots of fun visits and chats together. It's a lousy circumstance for getting to know awesome people better.
The radiation routine is a quick one. I walk in, scan a card, and gown up. They let me keep a gown for the duration of my treatments, so I can "pre-gown" at home to make sure the backyard is completely covered, and then just remove clothes when I get there. I sit down and have a brief chat with Janice and Jean, other survivors on the same schedule, until our turns are called. Then it's about ten minutes in the zapper and out to change and move on.
I'm not sure what the big deal was with the tattoos. They are smaller than freckles. In fact, the radiation technicians mark all over the tattoos on my abdomen with marker.
The session is so short, I usually hear the same reggae song in the background and watch the machine rotate around me a few times, and then I'm done. For my visual on Friday, I began to picture a skylight opening up in my spine to reveal a cringing tumor (gurgling with chemical poisoning) as it begins to shriek at the incoming beams. I had to keep from giggling so I could hold still. After a few days I noticed a slight sunburned feeling on my backside. I wonder if I should put one of those tanning booth stickers on me to check my progress.
The nightly Temodar thing is familiar and easy. Just no late-night snacking, which has paid off on the scale already -- despite getting lots of steroids in the mornings.
I started Avastin this week, too. It is also familiar and very tolerable. An IV infusion every other Thursday. And maybe a Benadryl at night, because once in a while I might get one hive from it. I'm just glad that Avastin is still available. It worked wonders on me before, but its FDA approval is in jeopardy of being pulled, simply because of its cost. (What is the value of five years of my life? Can I decide, or is that now up to a death panel?)
Topotecan is the fourth blow. It goes in through my Ommaya reservoir ("Oh, my -- a reservoir!"). Only Dr Fink or her nurse practitioner may do this infusion, because it is a highly specialized process. This has the longest list of undesirable side effects, including nausea and arachnitis. They pre-medicate me with more steroids and anti-nausea meds before giving it to me. I get this on Mondays and Thursdays for six sessions.
(Arachnitis, by the way, is kind of a chemical meningitis. It has nothing to do with spiders.)
With the exception of Temodar, I have the weekend off before heading on my daily trek to the medical center. I'm looking at the list of my chauffeurs for this week and eagerly anticipating our visits. I look forward to seeing Janice and Jean again. (We're all praying for each other.)
On Mondays I meet with my radiation oncologist for a review and also for blood tests to see if I still have bone marrow producing enough red and white blood cells and platelets to continue treatment.
We're one week down; not sure yet how many more to go. The worst part has been fatigue, as though I finally realized that a major battle is being waged. I'm managing pain very well, and I'm also getting some strength back in my droppy foot. (Just don't tell the kids, because they are in charge of keeping the house free from stuff Mom can trip on!)
Someone asked me if I'm hanging in there okay. I had to reply that I'm not hanging at all -- I can't hang, because I'm being so well supported!
Monday through Friday was radation and oral Temodar chemotherapy. My favorite part was riding down to the medical center with friends who gave me limo service. We had lots of fun visits and chats together. It's a lousy circumstance for getting to know awesome people better.
The radiation routine is a quick one. I walk in, scan a card, and gown up. They let me keep a gown for the duration of my treatments, so I can "pre-gown" at home to make sure the backyard is completely covered, and then just remove clothes when I get there. I sit down and have a brief chat with Janice and Jean, other survivors on the same schedule, until our turns are called. Then it's about ten minutes in the zapper and out to change and move on.
I'm not sure what the big deal was with the tattoos. They are smaller than freckles. In fact, the radiation technicians mark all over the tattoos on my abdomen with marker.
The session is so short, I usually hear the same reggae song in the background and watch the machine rotate around me a few times, and then I'm done. For my visual on Friday, I began to picture a skylight opening up in my spine to reveal a cringing tumor (gurgling with chemical poisoning) as it begins to shriek at the incoming beams. I had to keep from giggling so I could hold still. After a few days I noticed a slight sunburned feeling on my backside. I wonder if I should put one of those tanning booth stickers on me to check my progress.
The nightly Temodar thing is familiar and easy. Just no late-night snacking, which has paid off on the scale already -- despite getting lots of steroids in the mornings.
I started Avastin this week, too. It is also familiar and very tolerable. An IV infusion every other Thursday. And maybe a Benadryl at night, because once in a while I might get one hive from it. I'm just glad that Avastin is still available. It worked wonders on me before, but its FDA approval is in jeopardy of being pulled, simply because of its cost. (What is the value of five years of my life? Can I decide, or is that now up to a death panel?)
Topotecan is the fourth blow. It goes in through my Ommaya reservoir ("Oh, my -- a reservoir!"). Only Dr Fink or her nurse practitioner may do this infusion, because it is a highly specialized process. This has the longest list of undesirable side effects, including nausea and arachnitis. They pre-medicate me with more steroids and anti-nausea meds before giving it to me. I get this on Mondays and Thursdays for six sessions.
(Arachnitis, by the way, is kind of a chemical meningitis. It has nothing to do with spiders.)
With the exception of Temodar, I have the weekend off before heading on my daily trek to the medical center. I'm looking at the list of my chauffeurs for this week and eagerly anticipating our visits. I look forward to seeing Janice and Jean again. (We're all praying for each other.)
On Mondays I meet with my radiation oncologist for a review and also for blood tests to see if I still have bone marrow producing enough red and white blood cells and platelets to continue treatment.
We're one week down; not sure yet how many more to go. The worst part has been fatigue, as though I finally realized that a major battle is being waged. I'm managing pain very well, and I'm also getting some strength back in my droppy foot. (Just don't tell the kids, because they are in charge of keeping the house free from stuff Mom can trip on!)
Someone asked me if I'm hanging in there okay. I had to reply that I'm not hanging at all -- I can't hang, because I'm being so well supported!
Wednesday, October 06, 2010
You Get What You Get, and You Don't Throw a Fit!
Wise words from my fourth-grader. He learned it in school, and it was definitely blog-worthy!
We all get something. We get life, and we get mortal experiences that are designed to help us reach our highest potential as children of a loving God. As was mentioned in our recent General Conference by Elder D. Todd Christofferson:
Mortal experiences are sometimes quite awesome (chocolate, roses, the smell of my husband's neck, and hugs from my kids -- to name a few). And some are quite difficult, because mortality is messy. The good news is that the difficult parts are intended to be temporary (like my daughter's first wiggly baby tooth). But the gains that we make during these experiences are intended to last forever. God has consecrated every affliction to my gain, and these gains are everlasting treasures that far outweigh their price. I wouldn't dare throw a fit!
Instead, I feel both obligated and privileged to look for ways to consecrate these gains back to God for a good purpose.
"You get what you get, and you don't throw a fit!"
We all get something. We get life, and we get mortal experiences that are designed to help us reach our highest potential as children of a loving God. As was mentioned in our recent General Conference by Elder D. Todd Christofferson:
"Life will be long enough for each spirit, and each body will qualify for resurrection."
Mortal experiences are sometimes quite awesome (chocolate, roses, the smell of my husband's neck, and hugs from my kids -- to name a few). And some are quite difficult, because mortality is messy. The good news is that the difficult parts are intended to be temporary (like my daughter's first wiggly baby tooth). But the gains that we make during these experiences are intended to last forever. God has consecrated every affliction to my gain, and these gains are everlasting treasures that far outweigh their price. I wouldn't dare throw a fit!
Instead, I feel both obligated and privileged to look for ways to consecrate these gains back to God for a good purpose.
Tuesday, October 05, 2010
Not for the Spineless
(I just knew that had to be said somewhere in here!)
Two days of radiation are behind me, and they were a blast for the 'blast! After yesterday's first zapping, I stopped by Dr. Fink's office and got my head tapped. It's a lot more comfortable than a spinal tap, getting fluid drained out of the Ommaya Reservoir ("Oh, my! A reservoir!"). Just checking more spots to see if tumor cells are floating around in there, as the previous taps have come up negative. Hopefully this means the mass is just stuck to the wall of the spine and not spilling bad stuff anywhere else. It's just paralyzed with fear and waiting to be defeated.
I had a nostalgic moment last night, starting back on the Temodar routine. Eat a light dinner, wait 90 minutes, take anti-nausea pills and seizure meds, wait another 30 minutes, take Temodar, and sit up for another 30 minutes. No late-night snacking. I magically woke up two pounds lighter, even though I'm on steroids again!
I'm also lighter in my step -- literally. I have foot drop. My black-belted, clog-dancing, neuro-test-acing right foot is now unable to stand on tiptoe, and I walk a little funny now. I stay away from stairs, and I have to avoid tripping. (So the kids are charged with clearing all pathways in the house!) It's not unusual in people with sciatic problems, but my amazing neuromuscular strength was always a reassuring sign until now. Even so -- there are many other things on the complications buffet that I am happy to pass over for this one.
On Thursday, following radiation, I will be staying at the medical center for a double delight: Topotecan in the head, and Avastin in the arm. It will take most of the day, and will add to the hustle and bustle of downtown trips and children's schedules and all of the good stuff of life.
I am so grateful to be surrounded by family and church friends and angels from all over the place, who are eagerly at hand to meet every need. Between the logistical help (rides, meals, childcare, errands, etc.) and the spiritual support of prayers and fasting, I am definitely feeling the love. This helps me square my shoulders, straighten (what's left of) my spine, and move forward (foot-drop and all) with my life.
Two days of radiation are behind me, and they were a blast for the 'blast! After yesterday's first zapping, I stopped by Dr. Fink's office and got my head tapped. It's a lot more comfortable than a spinal tap, getting fluid drained out of the Ommaya Reservoir ("Oh, my! A reservoir!"). Just checking more spots to see if tumor cells are floating around in there, as the previous taps have come up negative. Hopefully this means the mass is just stuck to the wall of the spine and not spilling bad stuff anywhere else. It's just paralyzed with fear and waiting to be defeated.
I had a nostalgic moment last night, starting back on the Temodar routine. Eat a light dinner, wait 90 minutes, take anti-nausea pills and seizure meds, wait another 30 minutes, take Temodar, and sit up for another 30 minutes. No late-night snacking. I magically woke up two pounds lighter, even though I'm on steroids again!
I'm also lighter in my step -- literally. I have foot drop. My black-belted, clog-dancing, neuro-test-acing right foot is now unable to stand on tiptoe, and I walk a little funny now. I stay away from stairs, and I have to avoid tripping. (So the kids are charged with clearing all pathways in the house!) It's not unusual in people with sciatic problems, but my amazing neuromuscular strength was always a reassuring sign until now. Even so -- there are many other things on the complications buffet that I am happy to pass over for this one.
On Thursday, following radiation, I will be staying at the medical center for a double delight: Topotecan in the head, and Avastin in the arm. It will take most of the day, and will add to the hustle and bustle of downtown trips and children's schedules and all of the good stuff of life.
I am so grateful to be surrounded by family and church friends and angels from all over the place, who are eagerly at hand to meet every need. Between the logistical help (rides, meals, childcare, errands, etc.) and the spiritual support of prayers and fasting, I am definitely feeling the love. This helps me square my shoulders, straighten (what's left of) my spine, and move forward (foot-drop and all) with my life.
Sunday, October 03, 2010
'Twas the Night Before Treatment II
'Twas the night before treatment, and I'm soon off to bed
With a pain in my back and a lump on my head.
The Temodar pills once more lined up with care
With other drugs making it easy to bear.
Skilled doctors have made an aggressive new plan.
Temodar, Avastin, Topotecan
In mouth, in my arm, and even through my head
Determined to make all the cancer cells dead.
Insurance and IV poles will be prepared
In hopes that Avastin's fate will soon be spared.
If five years of life doesn't seem worth the cost,
Will FDA's ban mean that this hope is lost?
The spine zapper's ready for me; I'm tattooed,
And surrounded by love and prayers lifting my mood.
I'm forgetting about all the parts in harm's way,
Praying that only tumor cells get every ray.
From the top of my head to the base of my spine,
So far things have gone from bad to worse...to fine.
The prayers of the faithful make me quite assured
That any miracles meant for me have been secured.
With a pain in my back and a lump on my head.
The Temodar pills once more lined up with care
With other drugs making it easy to bear.
Skilled doctors have made an aggressive new plan.
Temodar, Avastin, Topotecan
In mouth, in my arm, and even through my head
Determined to make all the cancer cells dead.
Insurance and IV poles will be prepared
In hopes that Avastin's fate will soon be spared.
If five years of life doesn't seem worth the cost,
Will FDA's ban mean that this hope is lost?
The spine zapper's ready for me; I'm tattooed,
And surrounded by love and prayers lifting my mood.
I'm forgetting about all the parts in harm's way,
Praying that only tumor cells get every ray.
From the top of my head to the base of my spine,
So far things have gone from bad to worse...to fine.
The prayers of the faithful make me quite assured
That any miracles meant for me have been secured.
Friday, October 01, 2010
Comb it over and maybe they'll think it's a Bumpit...
I sported this look while heading off to get my final tattoos and my radiation schedule. Baseball cap or bow might still be in order. But I'm all set -- M-F at 9am all month! This is not for the spineless, but it'll still be a blast to send my 'blast on a blast-off!
Thursday, September 30, 2010
Post-post-post-Op!
It took me less time to recover in the hospital from surgery than it did to finally write about it! I'm feeling the love from the people who have called and emailed with concern, and I'm so sorry it's taken me so long to do the post-op post!
Surgery went well. This is "minor" neurosurgery (if there is such a thing), so it was a short procedure and an overnight stay in the ICU. One of my good friends from church is on staff at the hospital, and another one used to be, so I managed to get the VIP treatment. I wasn't a typical ICU patient. We heard the nurses cheering as the physical therapist took me on a stroll through the hallways. ("Yay -- we have a walker on this floor!") I was also allowed to be released directly from the ICU to home after all of my discharge hurdles had been cleared.
The surgical pain is hardly noticeable, especially compared to what I continue to feel in the low spine when I sit or lie down (okay, let's just say it's a major pain in the bum). I seem to be recovering well, especially as I am surrounded by angels from church who bring in daily meals and cards and flowers and offers of help and continued prayers and faith. I am especially grateful that my kids are remembering this as the week when nice people brought over treats and took them on fun adventures after school.
I also learned that my husband wanted to see if four dozen red and white roses would fit in my favorite vase -- and they did!
I came home to a clean, comfy recovery room adorned with the lovely symbol of the red and white blood cells that we want to preserve during this next attack of radiation and chemotherapy! I go in for final markings and scheduling tomorrow, and the blast on my 'blast-oma will commence on Monday.
As always, Dr. Tompkins did an expert job installing the Ommaya reservoir. But he admitted that he is a lousy barber -- and he's right! The worst side effect of the surgery so far is a fist-sized shaved spot on top of my head above my right eyebrow, where hair used to start. But I'll take that. After all, the Halloween costume opportunities are endless!
For example:
(maybe with the horns askew...)
(just cut a baseball in half, or draw stitching on my bandage...my son thought this was cool!)
(I call this one "The Phantom of the Opera-tion!")
(Really, just a matter of a green pillowcase and some sweats...)
(well, I'm just glad this one isn't Barney!)Sunday, September 26, 2010
Hitting my stride
I have a date for neurosurgery to implant my Ommaya reservoir. (I keep remembering the name, because I put my hand to my cheek and say, "Oh, my! A reservoir!)
It's less than 24 hours away. 3:30 on Monday, to be exact. I check in at 1:30, and after surgery I stay in the ICU for at least 24 hours. Infection is a high risk complication, especially when cerebral spinal fluid is involved, so I will be getting antibiotics for 24 hours.
The wagons have circled on my behalf. My husband's employer is wonderfully supportive. (Really -- call your local Mary Kay consultant and buy LOTS of stuff!!!) Family members and church members are already lined up for meals, child care/entertainment, and anything else I can ask for. We have a new captain of the angels, and her primary burden is sorting through all of the duplicate volunteers. Prayers and fasting are also in abundance.
(Speaking of fasting, despite the 3:30pm schedule, I still have directions of NPO after midnight. So I'm there with you.)
Temodar and radiation will start the following Monday. I went in last Friday for a flu shot, a C-T scan, and another MRI. I also got tatooed with several tiny black freckles, and I will go in again this Friday for "final marking" (whatever that means).
My husband and son got their flu shots, too. My daughter is looking forward to hers. We spent Saturday scouring the bathrooms and placing hand sanitizers at every entry in our house. The kids have been retrained in laundry and dishwashing skills. We are doing all we can to prevent injuries or infections. I'll be the princess in the bubble.
For health and safety reasons, I was asked about the possibility of being released from my calling as a cub scout leader. There are legitimate concerns about whether this would be advisable for the time being, but I am finally hitting my stride in this assignment and am really enjoying it. However, sometimes when we get really good at something, the calling is released, and we look forward to another opportunity to serve in the church. I said that if the bishopric prayed about it, I would do whatever they thought was best.
The most important calling to me is that of mother, which is a calling I waited many anxious years for. My role was not to bring my children into the world -- that was the job of their angel birthmothers. (I couldn't possibly make them this cute, and I'm glad I didn't pass any DNA on to them!) My role is to mother them and nurture them and prepare them for all that is needful in this world. And they are at a very enjoyable age right now. We have had some precious teaching moments together. In fact, feel that I am hitting my stride. But hopefully this will not signal the release of my calling to raise them. This time I am praying about it, and I know that the Lord will do whatever He thinks is best. These are His children, too, and he will provide every needful thing for them, just as He has for me. (I just hope that I am one of those needful things!)
So off I go tomorrow, hungry but cushioned and blanketed with prayers and faith of so many. There is truly enough faith present to work miracles, so I am secure in knowing that the outcome of this process will be the right outcome.
It's less than 24 hours away. 3:30 on Monday, to be exact. I check in at 1:30, and after surgery I stay in the ICU for at least 24 hours. Infection is a high risk complication, especially when cerebral spinal fluid is involved, so I will be getting antibiotics for 24 hours.
The wagons have circled on my behalf. My husband's employer is wonderfully supportive. (Really -- call your local Mary Kay consultant and buy LOTS of stuff!!!) Family members and church members are already lined up for meals, child care/entertainment, and anything else I can ask for. We have a new captain of the angels, and her primary burden is sorting through all of the duplicate volunteers. Prayers and fasting are also in abundance.
(Speaking of fasting, despite the 3:30pm schedule, I still have directions of NPO after midnight. So I'm there with you.)
Temodar and radiation will start the following Monday. I went in last Friday for a flu shot, a C-T scan, and another MRI. I also got tatooed with several tiny black freckles, and I will go in again this Friday for "final marking" (whatever that means).
My husband and son got their flu shots, too. My daughter is looking forward to hers. We spent Saturday scouring the bathrooms and placing hand sanitizers at every entry in our house. The kids have been retrained in laundry and dishwashing skills. We are doing all we can to prevent injuries or infections. I'll be the princess in the bubble.
For health and safety reasons, I was asked about the possibility of being released from my calling as a cub scout leader. There are legitimate concerns about whether this would be advisable for the time being, but I am finally hitting my stride in this assignment and am really enjoying it. However, sometimes when we get really good at something, the calling is released, and we look forward to another opportunity to serve in the church. I said that if the bishopric prayed about it, I would do whatever they thought was best.
The most important calling to me is that of mother, which is a calling I waited many anxious years for. My role was not to bring my children into the world -- that was the job of their angel birthmothers. (I couldn't possibly make them this cute, and I'm glad I didn't pass any DNA on to them!) My role is to mother them and nurture them and prepare them for all that is needful in this world. And they are at a very enjoyable age right now. We have had some precious teaching moments together. In fact, feel that I am hitting my stride. But hopefully this will not signal the release of my calling to raise them. This time I am praying about it, and I know that the Lord will do whatever He thinks is best. These are His children, too, and he will provide every needful thing for them, just as He has for me. (I just hope that I am one of those needful things!)
So off I go tomorrow, hungry but cushioned and blanketed with prayers and faith of so many. There is truly enough faith present to work miracles, so I am secure in knowing that the outcome of this process will be the right outcome.
Wednesday, September 22, 2010
The Mets Will Not Win This Season
I'm not talking about the baseball team from New York; I don't follow them.
"Mets" is medical shorthand for metastasis, which was the unanimous consensus during this morning's tumor board meeting. I have glioblastoma mets in my spine.
Dr. Fink asked me to come in afterward -- with my husband -- which sounded ominous at first, but it served a practical purpose. We went over the plan of attack, and there were a lot of details. (I was grateful that this wasn't the "get your life in order" talk.)
Because there is no defined scope of tumor cells beyond the visible mass, cyber-knife was ruled out for now. So was radiating the entire spine and cranium, because it would have a high risk of destroying bone marrow to the point where chemotherapy would be impossible.
I start Temodar chemotherapy on Monday. This is the oral stuff that began my treatment back in 2006. Tomorrow I meet with my neurosurgeon to arrange for implantation of an Ommaya port in my head sometime early next week. The Ommaya port goes in my head to facilitate repeated intrathecal injections of Topotecan chemotherapy.
I also start radiation treatments soon. I met the radiation oncologist today, who participated on the tumor board, and who is designing a plan for me. I go in on Friday for C-T scanning and marking* in preparation for 27 sessions that will probably start next week.
*I will have a low back tattoo. You will never see it.
I start taking steroids tonight, which means my next book will finally get finished. (Another answered prayer!) I'll be hyper and hungry, but it might provide some pain relief as I go through this process.
This is not a common situation, so we have no idea how (or if) this will work. But it's a plan, and it was clear that the doctors were guided, as we'd hoped and prayed they would be.
The Mets will not win this season. Even if we fail to destroy them, they cannot destroy anything but my body, which was intended to die someday anyway, followed by a resurrection. They can't destroy ME -- in fact, I think they are making ME stronger.
"Mets" is medical shorthand for metastasis, which was the unanimous consensus during this morning's tumor board meeting. I have glioblastoma mets in my spine.
Dr. Fink asked me to come in afterward -- with my husband -- which sounded ominous at first, but it served a practical purpose. We went over the plan of attack, and there were a lot of details. (I was grateful that this wasn't the "get your life in order" talk.)
Because there is no defined scope of tumor cells beyond the visible mass, cyber-knife was ruled out for now. So was radiating the entire spine and cranium, because it would have a high risk of destroying bone marrow to the point where chemotherapy would be impossible.
I start Temodar chemotherapy on Monday. This is the oral stuff that began my treatment back in 2006. Tomorrow I meet with my neurosurgeon to arrange for implantation of an Ommaya port in my head sometime early next week. The Ommaya port goes in my head to facilitate repeated intrathecal injections of Topotecan chemotherapy.
I also start radiation treatments soon. I met the radiation oncologist today, who participated on the tumor board, and who is designing a plan for me. I go in on Friday for C-T scanning and marking* in preparation for 27 sessions that will probably start next week.
*I will have a low back tattoo. You will never see it.
I start taking steroids tonight, which means my next book will finally get finished. (Another answered prayer!) I'll be hyper and hungry, but it might provide some pain relief as I go through this process.
This is not a common situation, so we have no idea how (or if) this will work. But it's a plan, and it was clear that the doctors were guided, as we'd hoped and prayed they would be.
The Mets will not win this season. Even if we fail to destroy them, they cannot destroy anything but my body, which was intended to die someday anyway, followed by a resurrection. They can't destroy ME -- in fact, I think they are making ME stronger.
Monday, September 20, 2010
Now what should we call this?
What's on my mind?
Not much, compared to what was on my mind when this blog started nearly five years ago. Ho-hum, so the brain has been clear for more than three years.
That's a very good thing, but now all the attention has drifted downward into my lower spine. So what do I call this blog now?
Sittin' on a Scream?
Getting to the Bottom of Cancer?
Heads or Tails?
Let the brainstorming (yes--pun intended) begin!
Not much, compared to what was on my mind when this blog started nearly five years ago. Ho-hum, so the brain has been clear for more than three years.
That's a very good thing, but now all the attention has drifted downward into my lower spine. So what do I call this blog now?
Sittin' on a Scream?
Getting to the Bottom of Cancer?
Heads or Tails?
Let the brainstorming (yes--pun intended) begin!
We're Sittin' on a Scream
I have a spine tumor. It's right there with my nerves, which accounts for the intense pain when I sit or lie down or sneeze. I was halfway through the magic "5 years of remission" that insurance companies like to hear, when a new challenge was thrown my way.
Dr. Fink called me on Saturday, not wanting to wait until this Thursday to meet with my neurosurgeon. She knew a good neurosurgeon and was arranging for him to meet with me today.
I met with the neurosurgeon today, and he showed me in no uncertain terms that there is a tumor on the spine; one that is perfusing and lighting up on the MRI. (It looks like an ugly caterpillar woven among the nerves.) He also saw that the resection cavity in my brain included the ventricle that made for easy access for GBM to escape out of my brain and down into the spine.
He will meet with Dr. Fink at a tumor board meeting on Wednesday morning, to discuss next steps: whether to do an open biopsy to get more information about the cells, or whether to proceed imediately into cyber knife and possibly chemotherapy. Cyber knife therapy would be delayed if they did an open biopsy, so I'm hoping that won't happen. Now the suspense is not what I have, but how we will proceed to treat what I have.
Although the news was shocking and very disappointing, I felt an amazing sense of calm, and a feeling that this was going in the right direction. I continue to pray that the doctors will be inspired to know what to do for me, and I continue to be buoyed by the prayers of many who continue their faithful vigil on my behalf.
The neurosurgeon didn't discuss prognosis, and I'm glad about that. I decided to be the Mary Kay bumblebee. Mary Kay loved the symbol of the bumblebee, because bumblebees are not aerodynamically built to be able to fly. However, because no one told the bumblebee, it still flies. Maybe if no one tells me that I can't live more than a few more months, then maybe I'll just still keep on living.
Dr. Fink called me on Saturday, not wanting to wait until this Thursday to meet with my neurosurgeon. She knew a good neurosurgeon and was arranging for him to meet with me today.
I met with the neurosurgeon today, and he showed me in no uncertain terms that there is a tumor on the spine; one that is perfusing and lighting up on the MRI. (It looks like an ugly caterpillar woven among the nerves.) He also saw that the resection cavity in my brain included the ventricle that made for easy access for GBM to escape out of my brain and down into the spine.
He will meet with Dr. Fink at a tumor board meeting on Wednesday morning, to discuss next steps: whether to do an open biopsy to get more information about the cells, or whether to proceed imediately into cyber knife and possibly chemotherapy. Cyber knife therapy would be delayed if they did an open biopsy, so I'm hoping that won't happen. Now the suspense is not what I have, but how we will proceed to treat what I have.
Although the news was shocking and very disappointing, I felt an amazing sense of calm, and a feeling that this was going in the right direction. I continue to pray that the doctors will be inspired to know what to do for me, and I continue to be buoyed by the prayers of many who continue their faithful vigil on my behalf.
The neurosurgeon didn't discuss prognosis, and I'm glad about that. I decided to be the Mary Kay bumblebee. Mary Kay loved the symbol of the bumblebee, because bumblebees are not aerodynamically built to be able to fly. However, because no one told the bumblebee, it still flies. Maybe if no one tells me that I can't live more than a few more months, then maybe I'll just still keep on living.
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