It's so much more fun to give glowing reports of happy news, and I've been lucky to have lots to share. But let's face it - cancer sometimes has its bad news moments.
My blood cell counts have crashed. I don't know all the details, but I'm neutropenic (very low white cells - very vulnerable to infection) and the other stuff is "pretty low". I was in an audit all day and so the nurse relayed the message to my husband, who did his best to capture the salient points without knowing all the detailed questions I would normally ask.
It's almost like my body kept hearing me brag about how I'm at the end of a twelve-cycle treatment regimen, and said, "Wow - I've had THAT much chemotherapy?? I guess I should be sick by now!" I wouldn't be surprised at all if I suddenly woke up bald, if my body lets my hair in on the secret.
These lab results were from a blood draw on Friday. Since Friday I've eaten lots of raw fruits and veggies, and I've shaken many hands. I spent most of Friday night and Saturday morning in our filthy garage, getting ready for our neighborhood garage sale and getting lots of bruises (thanks to low platelets) and exposure to unimaginable germs. Who knows what I could possibly be incubating at this moment. Sleep deprivation and a busy/stressful week do not help, either.
(Quick -- tell me a joke, because laughter boosts the immune system!)
I'm hopeful that next week's MRI scan will be good, so that treatment won't be necessary. If that's the case, then I just need to be the bubble girl and avoid surviving glioblastoma by dying of a freak infection.
It's a prayer moment!
Monday, September 10, 2007
Sunday, September 02, 2007
ch-ch-ch-ch-changes...
Today I was called, sustained, and set apart to be a teacher in our Relief Society organization (the women's organization in our church). I teach a thirty-minute lesson every third Sunday, starting this month.
I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.
I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.
This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")
Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.
I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.
I was thrilled to get this calling for many reasons, but especially because it requires me to be alive and functioning! They don't need me to be the choir director for the Second Coming -- at least not yet! (Those who have read my earliest posts know that my niece's theory was that if I died, maybe it was so I could be the choir director for the Second Coming!) I'm glad that my last calling wasn't my LAST calling, and that I can still serve a useful purpose here upon the earth.
I am looking forward to teaching the sisters in my ward. For one thing, I already know firsthand that they are a very charitable group of women, so it makes me feel less nervous as I prepare my first lesson. Also, it will be nice to spend more time giving back something to these women, who rendered so much service to me when I needed it.
This new opportunity is great but also somewhat bittersweet, as the plan is to eventually release me from my calling as the Primary music director after the children do their fall program. Singing with the Primary children is part of my music therapy. I have had many Maria Von Trapp moments working with them, and will miss them dearly. ("So long, farewell, auf wiedersehen, good-bye...")
Change can be hard to adjust to, especially when basking in a comfort zone. It's hard to end a good chapter. The good news is that when we end a chapter, we start a new one, and it can be full of wonderful things. And even when we have to put our pencils down and end the whole story of our lives there is the post-life epilogue.
I'm glad that I will still get to see the Primary children sing, and maybe I'll get a chance to substitute on occasion for the new director. I still have my callings as the ward choir director and music chair, so I still get some good music therapy. (And we're starting to work on Christmas music already!) And I am really looking forward to this new teaching opportunity, because I came to appreciate long ago that the teacher is the one who learns the most.
Friday, August 31, 2007
Cleared for landing?
Lab results this week = good! ANC (absolute neutrophyl count) is on the low end of good, so I still need to be careful around germs, but everything was good enough to proceed with next week's chemotherapy infusion.
It might be my last one. At least I know it's the last one for this treatment protocol. I feel very fortunate to have gone twelve cycles - as planned - without having any problems that would delay or change treatment.
The end of this cycle will be pivotal, as we see how the MRI looks on September 18, and decide where to go from there.
It might be my last one. At least I know it's the last one for this treatment protocol. I feel very fortunate to have gone twelve cycles - as planned - without having any problems that would delay or change treatment.
The end of this cycle will be pivotal, as we see how the MRI looks on September 18, and decide where to go from there.
Wednesday, August 22, 2007
Starting Cycle 12
Labwork this week = excellent! I remain the walking miracle. I aced the neuro test, too. (Memory words today were butterfly, apple, and baseball.)
I was cleared for my long chemo infusion today. This is the start of cycle 12, the last four weeks of the treatment protocol that I began last October, when tumor progression was noted. The treatment has been very successful (miracles all around). In two weeks I have a short chemo infusion, and at the end of this four week cycle I will have another MRI, which will be a turning point. It will either have bad news, which will cause us to re-evaluate our approach, or it will have good news (like it has each time since I started this new treatment). If the latter is the result, my oncologist and I will be discussing whether to go on a maintenance treatment regimen (involving less chemotherapy), or whether I can take a break altogether from treatments and just undergo monitoring. It would be the closest thing to the "r" word (remission) that is possible in this kind of cancer. It would be an awesome thing. There will be a huge call for prayers as we lead up to that pivotal moment!
I was cleared for my long chemo infusion today. This is the start of cycle 12, the last four weeks of the treatment protocol that I began last October, when tumor progression was noted. The treatment has been very successful (miracles all around). In two weeks I have a short chemo infusion, and at the end of this four week cycle I will have another MRI, which will be a turning point. It will either have bad news, which will cause us to re-evaluate our approach, or it will have good news (like it has each time since I started this new treatment). If the latter is the result, my oncologist and I will be discussing whether to go on a maintenance treatment regimen (involving less chemotherapy), or whether I can take a break altogether from treatments and just undergo monitoring. It would be the closest thing to the "r" word (remission) that is possible in this kind of cancer. It would be an awesome thing. There will be a huge call for prayers as we lead up to that pivotal moment!
...and Nineteen!
No, I haven't had a setback! I'm still celebrating 20 months of A.D. life and doing well (scored over 400 points in Scrabble against a whole-brained person). This "nineteen" refers to nineteen years of wedded bliss! It was an anniversary that I didn't think I'd be able to see when I was initially diagnosed, but people told me to ignore the statistics, and they were right. My mom said that if I hang in there for our twentieth wedding anniversary she wants to send us to Hawaii.
Our nineteenth wedding anniversary was on Monday, but in typical fashion we made it a long celebration. On Saturday Prince Jared spent the entire day cleaning our bedroom, which was really nice! I walked in and wondered if he had built a bigger room!
Our nineteenth wedding anniversary was on Monday, but in typical fashion we made it a long celebration. On Saturday Prince Jared spent the entire day cleaning our bedroom, which was really nice! I walked in and wondered if he had built a bigger room!
On Sunday we had an anniversary-themed dinner with my dad and stepmom. I decorated the dining room with my wedding gown and temple dress and pictures and flowers and stuff. We put a small television in the room and played our wedding video during the dinner. It's always so fun to see that happy young couple at a time when we figured we had just made it to Happily-Ever-After, and we had no idea what challenges we would face together. Luckily we've weathered all the storms of our life so far by clinging together. It's always nice to be married to your best friend.
We had a family night/double-date night with the kids Monday evening, and saw Hairspray at a dinner theater place. I thought one of the songs was especially appropriate for our anniversary state of mind:
You're Timeless To Me
(just some snippets of it, at least!)
You're like a stinky old cheese, babe
Just gettin' riper with age
You're like a fatal disease, babe
But there's no cure
So let this fever rage
Some folks can't stand it
Say time is a bandit
But i take the opposite view
Cause when i need a lift
Time brings a gift
Another day with you
A twist or a waltz
It's all the same schmaltz
With just a change in the scenery
You'll never be old hat
That's that!
You're timeless to me
You're like a rare vintage ripple
A vintage they'll never forget
So pour me a teeny virgin triple
And we can toast the fact we ain't dead yet!
I can't stop eating
Your hairline's receding
Soon there'll be nothing at all
So, you'll wear a wig
While i roast a pig
Hey! Pass that Geritol
You're like a broken down Chevy
All you need is a fresh coat of paint
And you got me goin' hot and heavy
You're fat and old, but baby, boring you ain't!
Some folks don't get it
But we never fret it
'Cause we know that time is our friend
It's plain to see
That you're stuck with me
Until the bitter end...
You'll always hit the spot
Big shot!
You're timeless to me
You'll always be du jour
Mon amour
You're timeless to me
You'll always be first string
Ring-a-ding-ding!
You're timeless to me
You're Timeless To Me
(just some snippets of it, at least!)
You're like a stinky old cheese, babe
Just gettin' riper with age
You're like a fatal disease, babe
But there's no cure
So let this fever rage
Some folks can't stand it
Say time is a bandit
But i take the opposite view
Cause when i need a lift
Time brings a gift
Another day with you
A twist or a waltz
It's all the same schmaltz
With just a change in the scenery
You'll never be old hat
That's that!
You're timeless to me
You're like a rare vintage ripple
A vintage they'll never forget
So pour me a teeny virgin triple
And we can toast the fact we ain't dead yet!
I can't stop eating
Your hairline's receding
Soon there'll be nothing at all
So, you'll wear a wig
While i roast a pig
Hey! Pass that Geritol
You're like a broken down Chevy
All you need is a fresh coat of paint
And you got me goin' hot and heavy
You're fat and old, but baby, boring you ain't!
Some folks don't get it
But we never fret it
'Cause we know that time is our friend
It's plain to see
That you're stuck with me
Until the bitter end...
You'll always hit the spot
Big shot!
You're timeless to me
You'll always be du jour
Mon amour
You're timeless to me
You'll always be first string
Ring-a-ding-ding!
You're timeless to me
It's been a while since I added a song to my blog soundtrack, and I thought this one was pretty cute!
On Tuesday my dad and stepmom watched the kids, so we could go to the temple and out to dinner. At the temple we did proxy sealings, which is a nice way to relive our own marriage sealing in the Salt Lake Temple. The ceremony is almost similar, so we make it a tradition to go and do that every year. It's kind of like our own way of renewing our vows and being reminded of the blessings that are pronounced upon a couple who is sealed for time and all eternity. It's nice to really be "timeless" to each other.
After the temple we headed off to our anniversary dinner spot, which is Randy's Steakhouse in Frisco. We discovered this place ten years ago, and have gone there for our anniversary every year since. It is a very romantic setting in a restored historical home, with a piano bar and more dining rooms added on throughout the years. Randy himself cuts each steak before it is cooked, and then he strolls through the restaurant, making friends with the customers as they dine. He congratulated us heartily and treated us to lemon chiffon cake. We had our typical fabulous super-tender 8 oz filet, and we reminisced about the many changes that have taken place over the past ten years since we had our first dinner there.
Back then we had two beagles and no kids, we lived in the third of five homes we have had since moving to our town nearly twelve years ago, and we worked for different companies than we do now. My parents had just divorced, and we thought that was the worst thing that would ever happen to us. The extent of our infertility, miscarriage, and adoption adventures were yet unknown at that time. Cancer was something that only happened to other, older people, as far as we were concerned.
Life has turned out very differently than it looked back then. In some ways it was bad, in other ways it was good, but through both good and bad we have been blessed. John Lennon was right: "Life is what happens to you while you're busy making other plans."
As it turned out, my parents' divorce caused us to reinforce and fortify our still-happy marriage. This prepared us for the onslaught of infertility, which usually attacks all the vital parts of a marriage. We emerged from heartbreaking experiences stronger instead of broken. We learned that our greatest blessings came in unexpected packages, and that thorny ways did lead to joyful ends.
That experience taught us to trust completely in the Lord, because his thoughts and ways are higher than our ways, and if we let him be in charge of the blessings and how they come about, they end up being a lot better than what we could come up with on our own. From a practical standpoint, it also taught us important medical information, so we were being prepared both spiritually and physically for our next adventure: cancer. Who knows what is next, but we know that whatever it is, we will be prepared.
Luckily many more surprises were fun. Stuff we never expected, but love, include:
- the house we live in today
- the huge expansion of the area between our house and Randy's Steakhouse, with loads of shopping and fun things to do
- adopting two kids, including one of a different race who fits right in
- spending time together on Capitol Hill, lobbying for adoption tax credits
- new karate belts
- resurrected clogging duets
- becoming a chief executive, then retired, and later self-employed
- becoming an author
- becoming part of the Mary Kay family
- Messiah duets
- teaching voice lessons
- reuniting with friends and family
- discovering a passion for genealogy work and learning cool stuff about my ancestry
- being alive long after my expiration date, and keeping my quality of life
and on and on and on!
It's been a good ten years since our first dinner at Randy's. It's been a good nearly quarter of a century since our first date. It's been a great nineteen-year "permanent date" since the day we were married. Very different than expected, but nevertheless very blessed, with much to look forward to.
Sunday, August 12, 2007
...and TWENTY!!!
Yep, I'm at the 20-month mark today!
This was an important milestone for me (actually, each day that I am still drawing breath is an important milestone, but...) because I was told that most glioblastoma multiforme studies show a break point among the treatment groups at 20-24 months after diagnosis where the curve flattens out and there are very few or no further tumor recurrences or deaths. It doesn't mean that I am cured (still need prayers), but it is certainly an encouraging sign.
This "birthday" weekend was another reunion of sorts. We traveled down to The Woodlands, just north of Houston, where we lived for a few years before coming to the Dallas area. We stayed with my mom, and we attended church with her to see one of our friends' sons report on his two-year mission, which he served in Canada. I remember when he was a preschooler, and it was so fun to see him all grown up and doing so well. My friend had the typical and well-deserved "returned-missionary-mom" glow, and I couldn't help but hope that I would stick around to experience the moment when my son returns from his mission. That would be fifteen years from now, which seems like a long shot, but I remember when 20 months seemed like a long shot.
I also got to spend time with another friend, who came in from California for the same event. I saw her daughter, who recently graduated from college and is starting her master's degree program soon. I thought of my own daughter, who just turned two, and hoped that seeing these milestones among my friends' kids would end up being symbolic of what my own milestone today might portend. (If not, I'll just have to haunt my kids when they have special events!)
To celebrate this milestone I have added a feature on this blog site to help support some very relevant research that is being done to find a cure for my cancer. There are two specific funds that are worth supporting. One is Dr. Samuel Hassenbusch's fund at MD Anderson. Dr. Hassenbusch is a GBM survivor who has a vaccine treatment that is very promising. The other is Dr. Karen Fink's fund at Baylor Medical Center. Dr. Fink is my neuro-oncologist, and is very involved in research. In fact, the experimental protocol she is using on me has kept me alive and well in order to celebrate today's milestone. Please check out the links to the left for donation forms and instructions. Dr. Hassenbusch's form is pretty self-explanatory with mailing instructions; Dr. Fink's form doesn't have the mailing address printed on it, so scroll all the way down on the left of this page, past the archives list, to find out where to send it. They will send you tax receipts, and the donations go directly toward research that may very well be the answer to our prayers for my life. Any and all would be very much appreciated!
This was an important milestone for me (actually, each day that I am still drawing breath is an important milestone, but...) because I was told that most glioblastoma multiforme studies show a break point among the treatment groups at 20-24 months after diagnosis where the curve flattens out and there are very few or no further tumor recurrences or deaths. It doesn't mean that I am cured (still need prayers), but it is certainly an encouraging sign.
This "birthday" weekend was another reunion of sorts. We traveled down to The Woodlands, just north of Houston, where we lived for a few years before coming to the Dallas area. We stayed with my mom, and we attended church with her to see one of our friends' sons report on his two-year mission, which he served in Canada. I remember when he was a preschooler, and it was so fun to see him all grown up and doing so well. My friend had the typical and well-deserved "returned-missionary-mom" glow, and I couldn't help but hope that I would stick around to experience the moment when my son returns from his mission. That would be fifteen years from now, which seems like a long shot, but I remember when 20 months seemed like a long shot.
I also got to spend time with another friend, who came in from California for the same event. I saw her daughter, who recently graduated from college and is starting her master's degree program soon. I thought of my own daughter, who just turned two, and hoped that seeing these milestones among my friends' kids would end up being symbolic of what my own milestone today might portend. (If not, I'll just have to haunt my kids when they have special events!)
To celebrate this milestone I have added a feature on this blog site to help support some very relevant research that is being done to find a cure for my cancer. There are two specific funds that are worth supporting. One is Dr. Samuel Hassenbusch's fund at MD Anderson. Dr. Hassenbusch is a GBM survivor who has a vaccine treatment that is very promising. The other is Dr. Karen Fink's fund at Baylor Medical Center. Dr. Fink is my neuro-oncologist, and is very involved in research. In fact, the experimental protocol she is using on me has kept me alive and well in order to celebrate today's milestone. Please check out the links to the left for donation forms and instructions. Dr. Hassenbusch's form is pretty self-explanatory with mailing instructions; Dr. Fink's form doesn't have the mailing address printed on it, so scroll all the way down on the left of this page, past the archives list, to find out where to send it. They will send you tax receipts, and the donations go directly toward research that may very well be the answer to our prayers for my life. Any and all would be very much appreciated!
Monday, August 06, 2007
Orange is the new black?
Nah -- it's just another step closer to black! (In karate, at least!)
My son and I had our belt tests today, and are now sporting orange belts! It's not only fun for us to do this together, but it's the ultimate neuro test, challenging memory, balance, coordination, and strength. Like clog dancing, it's life-affirming and reassuring and good for body and mind. There was a time when it looked like I wouldn't see this day, let alone be of sound mind and body, so it's more than just a new belt and certificate to celebrate.
We have our sights on purple now, which is especially exciting for me because I stopped at the orange belt level twenty years ago. So this is new territory for me now that I am older and bigger with less of a brain. Plus at the purple belt level we switch our uniforms from white to a more flattering black (no more Sta-puff Marshmallow Ninja), which is the biggest motivator of all!
So let's see...in the last 30 days I managed to pass my MRI test, my neuro test, my blood tests, and my belt test. This is a good trend...hope it continues!
My son and I had our belt tests today, and are now sporting orange belts! It's not only fun for us to do this together, but it's the ultimate neuro test, challenging memory, balance, coordination, and strength. Like clog dancing, it's life-affirming and reassuring and good for body and mind. There was a time when it looked like I wouldn't see this day, let alone be of sound mind and body, so it's more than just a new belt and certificate to celebrate.
We have our sights on purple now, which is especially exciting for me because I stopped at the orange belt level twenty years ago. So this is new territory for me now that I am older and bigger with less of a brain. Plus at the purple belt level we switch our uniforms from white to a more flattering black (no more Sta-puff Marshmallow Ninja), which is the biggest motivator of all!
So let's see...in the last 30 days I managed to pass my MRI test, my neuro test, my blood tests, and my belt test. This is a good trend...hope it continues!
Friday, August 03, 2007
Good labs!
One step closer to reaching a good milestone! My labwork came back good this time, so I am cleared for my chemo infusion next week!
So far (knock wood) I have been able to follow the protocol we started last October with no interruptions in treatment. There have been some times when we came close to having to suspend treatment, but I always bounced back just in time. It's a prayer thing. As a friend of mine said about her husband's good news, "Miracle Accepted"!
Just a few more weeks (almost 7 to be exact), and if all goes well I might be able to transition from "recurrent tumor" to "successful treatment protocol; no evidence of disease progression; recommended for maintenance and/or monitoring."
Huzzah! (Thanks, and keep the prayers coming!)
So far (knock wood) I have been able to follow the protocol we started last October with no interruptions in treatment. There have been some times when we came close to having to suspend treatment, but I always bounced back just in time. It's a prayer thing. As a friend of mine said about her husband's good news, "Miracle Accepted"!
Just a few more weeks (almost 7 to be exact), and if all goes well I might be able to transition from "recurrent tumor" to "successful treatment protocol; no evidence of disease progression; recommended for maintenance and/or monitoring."
Huzzah! (Thanks, and keep the prayers coming!)
Tuesday, July 31, 2007
In a weak moment I have written a book...
"In a weak moment I have written a book..." - Margaret Mitchell
This has become one of my favorite understatements.
I beat the odds and survived long enough to turn forty last week, and we celebrated with a family trip to Georgia. Being a superfan of Gone With the Wind I wanted to go to Atlanta to visit the land of Tara, and "The Dump" -- the apartment where Margaret Mitchell wrote the book. She was almost a quadragenarian when it was published. She didn't have a brain tumor, so she took ten years to write it while convalescing from an injury.
It was fascinating to learn more about the life of Margaret Mitchell, and the process of writing and publishing Gone With the Wind. Not only because it is my favorite novel, but also because I could relate to being in a weak moment of recuperation and writing a book. In fact, we also visited the Liahona Bookstore in Atlanta, where copies of my book were being sold, and I signed some copies and chatted with the management and staff to thank them for carrying it.
We also visited Jonesboro, to visit the Road To Tara Museum, and to dig up some of the "red earth of Tara", which gave Scarlett O'Hara her strength.
We stayed in Macon, Georgia, at the historic 1842 Inn, an antebellum home that avoided being destroyed by Sherman's troops during the Civil War. (It also avoided being destroyed by my two children, thank goodness!)
We chose Macon, because my brother Jim has just started a Moh's surgery fellowship there. It was nice to see Jim and thank him for being part of the reason I was able to have a 40th birthday. Without his insistence that I was having seizures, I would have been left to rely on the ER doctor's advice that my symptoms were probably just something weird that would go away by itself in six months (that advice would have killed me). Jim also let me cream him in a game of Scrabble.
We had more time on the road again as a family, more use of the spray bottle, and more whinnying when we saw a Ford Mustang driving down the road. The coolest surprise on the trip was my son's high interest in the movie, Gone With the Wind, and his insistence that we watch it together on the little portable DVD player.
Now that I am forty and still alive, the next question is my next book. I have entertained some ideas, but just like in my B.C. days my family and my work have taken most of my time, and the other stuff of life easily takes the rest of it. And I'm not on as many steroids, so I'm not up writing at 5:30 am like I was in my post-op days! I have to keep Ms. Mitchell's quote handy as a reminder that I should not wait for my next "weak moment" to write another book. And I shouldn't wait ten years. Even though things are looking as good as they can for me right now, I should keep the cancer glasses in place, to motivate me to do things while I still can.
After all...tomorrow IS another day, but we don't know what it will bring, except perhaps a string of yesterdays full of "oh, darn -- I should have________".
This has become one of my favorite understatements.
I beat the odds and survived long enough to turn forty last week, and we celebrated with a family trip to Georgia. Being a superfan of Gone With the Wind I wanted to go to Atlanta to visit the land of Tara, and "The Dump" -- the apartment where Margaret Mitchell wrote the book. She was almost a quadragenarian when it was published. She didn't have a brain tumor, so she took ten years to write it while convalescing from an injury.
It was fascinating to learn more about the life of Margaret Mitchell, and the process of writing and publishing Gone With the Wind. Not only because it is my favorite novel, but also because I could relate to being in a weak moment of recuperation and writing a book. In fact, we also visited the Liahona Bookstore in Atlanta, where copies of my book were being sold, and I signed some copies and chatted with the management and staff to thank them for carrying it.
We also visited Jonesboro, to visit the Road To Tara Museum, and to dig up some of the "red earth of Tara", which gave Scarlett O'Hara her strength.
We stayed in Macon, Georgia, at the historic 1842 Inn, an antebellum home that avoided being destroyed by Sherman's troops during the Civil War. (It also avoided being destroyed by my two children, thank goodness!)
We chose Macon, because my brother Jim has just started a Moh's surgery fellowship there. It was nice to see Jim and thank him for being part of the reason I was able to have a 40th birthday. Without his insistence that I was having seizures, I would have been left to rely on the ER doctor's advice that my symptoms were probably just something weird that would go away by itself in six months (that advice would have killed me). Jim also let me cream him in a game of Scrabble.
We had more time on the road again as a family, more use of the spray bottle, and more whinnying when we saw a Ford Mustang driving down the road. The coolest surprise on the trip was my son's high interest in the movie, Gone With the Wind, and his insistence that we watch it together on the little portable DVD player.
Now that I am forty and still alive, the next question is my next book. I have entertained some ideas, but just like in my B.C. days my family and my work have taken most of my time, and the other stuff of life easily takes the rest of it. And I'm not on as many steroids, so I'm not up writing at 5:30 am like I was in my post-op days! I have to keep Ms. Mitchell's quote handy as a reminder that I should not wait for my next "weak moment" to write another book. And I shouldn't wait ten years. Even though things are looking as good as they can for me right now, I should keep the cancer glasses in place, to motivate me to do things while I still can.
After all...tomorrow IS another day, but we don't know what it will bring, except perhaps a string of yesterdays full of "oh, darn -- I should have________".
Monday, July 23, 2007
Q-U-A-D-R-A-G-E-N-A-R-I-A-N
quadragenarian: (n) a person between the ages of 40 and 49; not commonly found among GBM patients who were diagnosed in their thirties.
Today's MRI scan looked "beautiful", in sharp contrast to my roots that need serious touching up (Carlos has been booked solid). But hey -- at least I have hair! And the little gray straggles remind me that I will likely reach quadragenarian status on Wednesday (assuming I make it home safely in traffic)! We'll have an early celebration tonight.
Today's MRI scan looked "beautiful", in sharp contrast to my roots that need serious touching up (Carlos has been booked solid). But hey -- at least I have hair! And the little gray straggles remind me that I will likely reach quadragenarian status on Wednesday (assuming I make it home safely in traffic)! We'll have an early celebration tonight.
Saturday, July 21, 2007
Lab results
This was the first chemo cycle in a while that didn't have bad labs to keep me in suspense over my treatment schedule. Upon my return from our Utah trip I headed for the lab to see if I am healthy enough to get my chemotherapy on Monday (assuming the MRI keeps showing that the chemo is working). I went in on Wednesday and then nervously awaited the phone call on Thursday to get my results...and then when I didn't hear anything I figured no news might be good news.
On Friday I finally got the call. White blood cell count was great. Neutrophils were great. Platelets were great. Clinical chemistry panel was "perfect". Who'd have thunk I'd been shooting up cytotoxic chemicals for the past nine months?
My other family members have been dealing with colds, allergies, migraines, heart disease, stitches, and all kinds of stuff. Except for -- well, you know -- the catastrophic grade IV brain tumor (which didn't even show up on the last MRI), I'm the only one who feels healthy. After 19 months of cancer treatment, I still have more hair and energy than my husband!
On Friday I finally got the call. White blood cell count was great. Neutrophils were great. Platelets were great. Clinical chemistry panel was "perfect". Who'd have thunk I'd been shooting up cytotoxic chemicals for the past nine months?
My other family members have been dealing with colds, allergies, migraines, heart disease, stitches, and all kinds of stuff. Except for -- well, you know -- the catastrophic grade IV brain tumor (which didn't even show up on the last MRI), I'm the only one who feels healthy. After 19 months of cancer treatment, I still have more hair and energy than my husband!
Thursday, July 19, 2007
...and NINETEEN!
I know...it's actually 19 months and one week!
(Since my diagnosis, not since my last blog post!)
I've been a tardy poster (again) because I've been a busy girl!
I spent my 19 month milestone at a wonderful family reunion in Utah. Our trip was a reunion in lots of fun ways.
First of all, there is nothing like bonding with my husband and kids on a 20-hour road trip from Texas to Utah. We saw beautiful scenery going through western Texas, into New Mexico, and through western Colorado and eastern Utah. We spent a little time on historic Route 66 and stayed overnight at the historic and kitchy El Rancho Hotel in Gallup, NM. We learned the value of a spray bottle of water for resolving sibling disputes in the back seat (much more amusing and nicer than yelling at the kids). We enjoyed seeing our son get so excited as we passed by beautiful rock formations and arches, and playing the game of whinnying anytime we spotted a Ford Mustang (my husband's favorite car). We were also pleasantly surprised at our daughter's decision to be potty trained on the trip. (That was easy!)
The official reunion was for my paternal side of the family. I hadn't been to one for a long time, and since they are only held every couple of years I certainly didn't want to miss this one. My paternal grandparents are deceased, but we were fortunate to be surrounded by their brothers and sisters, my dad's brothers and sisters, and cousins galore (and their kids). We had so much fun being among a huge crowd of people who loved each other and shared so many memories together. Some of us commented about how that must be what heaven will be like.
A side benefit was the opportunity for a mini-reunion with some of my husband's family. We stayed with his parents, and we were able to see his two sisters, who live with their families in Utah. One of his brothers came in from Michigan, and one came in from Nevada, so we had more opportunities to feel the love.
I had a brief lunch reunion and book signing with support group members while I was there, and before we knew it we were off again for the ride home. As always, these trips are never long enough, especially since I would have loved another gaggle reunion or a Cloggers West reunion or a myriad of other opportunities while we were in Utah.
Our trip home was delayed by another "trip" -- this time it was my son landing face first on the only part of his grandma's sofa that wasn't soft. I had to hold his hand and try to comfort him as the ER doctor put three stitches into his upper lip. He was hurting and terrified, but he was a brave little guy, and he was happy to go home with his glove "balloon" and a new teddy bear and truck (thanks to some kind folks who donated gifts for pediatric emergency patients).
The delay meant getting home safe and sound but very late, so it was nice to be snug in our own beds again. And we think the stitches have finally cured my son of his thumb-sucking habit. All is well.
My next adventure is a trip through the MRI tube this coming Monday. I am once again at another fateful nine-month point (more than nine months since my last recurrence was confirmed) and I am once again leaning on prayers and hoping for miracles. After all, I've made it this far!
(Since my diagnosis, not since my last blog post!)
I've been a tardy poster (again) because I've been a busy girl!
I spent my 19 month milestone at a wonderful family reunion in Utah. Our trip was a reunion in lots of fun ways.
First of all, there is nothing like bonding with my husband and kids on a 20-hour road trip from Texas to Utah. We saw beautiful scenery going through western Texas, into New Mexico, and through western Colorado and eastern Utah. We spent a little time on historic Route 66 and stayed overnight at the historic and kitchy El Rancho Hotel in Gallup, NM. We learned the value of a spray bottle of water for resolving sibling disputes in the back seat (much more amusing and nicer than yelling at the kids). We enjoyed seeing our son get so excited as we passed by beautiful rock formations and arches, and playing the game of whinnying anytime we spotted a Ford Mustang (my husband's favorite car). We were also pleasantly surprised at our daughter's decision to be potty trained on the trip. (That was easy!)
The official reunion was for my paternal side of the family. I hadn't been to one for a long time, and since they are only held every couple of years I certainly didn't want to miss this one. My paternal grandparents are deceased, but we were fortunate to be surrounded by their brothers and sisters, my dad's brothers and sisters, and cousins galore (and their kids). We had so much fun being among a huge crowd of people who loved each other and shared so many memories together. Some of us commented about how that must be what heaven will be like.
A side benefit was the opportunity for a mini-reunion with some of my husband's family. We stayed with his parents, and we were able to see his two sisters, who live with their families in Utah. One of his brothers came in from Michigan, and one came in from Nevada, so we had more opportunities to feel the love.
I had a brief lunch reunion and book signing with support group members while I was there, and before we knew it we were off again for the ride home. As always, these trips are never long enough, especially since I would have loved another gaggle reunion or a Cloggers West reunion or a myriad of other opportunities while we were in Utah.
Our trip home was delayed by another "trip" -- this time it was my son landing face first on the only part of his grandma's sofa that wasn't soft. I had to hold his hand and try to comfort him as the ER doctor put three stitches into his upper lip. He was hurting and terrified, but he was a brave little guy, and he was happy to go home with his glove "balloon" and a new teddy bear and truck (thanks to some kind folks who donated gifts for pediatric emergency patients).
The delay meant getting home safe and sound but very late, so it was nice to be snug in our own beds again. And we think the stitches have finally cured my son of his thumb-sucking habit. All is well.
My next adventure is a trip through the MRI tube this coming Monday. I am once again at another fateful nine-month point (more than nine months since my last recurrence was confirmed) and I am once again leaning on prayers and hoping for miracles. After all, I've made it this far!
Tuesday, July 03, 2007
Whew
Dad's surgery went well -- a very "boring" quadruple bypass, according to his surgeon. Not surprisingly, of course, because once again our family has been sustained by faith and prayer.
Plus...hey, it was a NO-BRAINER!!
Plus...hey, it was a NO-BRAINER!!
Sunday, July 01, 2007
The Wizard of Oz
It's funny how sometimes things fall together around a common theme. It's nice, because I'm always searching for themes for birthday parties and Halloween and stuff like that, usually many months before the event.
It looks like this year we should have a Wizard of Oz-themed Halloween. We loved the stage show, Wicked, which is a prequel to The Wizard of Oz. My son even likes to sing songs from it every now and then. A few weeks ago I found some red glittery shoes for my daughter on sale, along with a t-shirt ideal for my little-league star son: it had baseball graphics on it, with the slogan, "There's No Place Like Home." And we don't live in Kansas, but it's that time of year when we have exciting weather in Texas. So it's been on our minds.
Speaking of minds, I figured that I would be the scarecrow: "If I only had a brain" (at least a cancer-free one).
Our prayers have recently turned to my dad, who is having heart surgery this week. Unlike his daughter (the professional patient) my dad has never been hospitalized before, so it's a doozy of an adjustment. I'm hoping that he will feel the same strength and comfort that has carried me through my ordeals, which emanates from the faith and prayers of many.
Dad's situation is sobering, but since I have learned to instinctively extract something light out of heavy situations, it occurred to me that we now have a tin man for our ensemble: "If I only had a heart" (He has a real heart in the good sense, but anatomically speaking, he'd like a disease-free one).
We can't double up our parts, so we have to summon our own courage (which again, is fueled by faith and prayers). The part of the Cowardly Lion remains to be cast. Once in a while we torment my youngest brother, a very eligible bachelor of twenty-six, teasing him about how Brigham Young once declared that an unmarried man of that age was a "menace to society". The reality, of course, is that all good things will happen in their right time and way (as I learned during the long wait for my children). My brother is a good sport, so maybe he'll indulge us and be the guy in the lion costume wishing, "If I only had the nerve" (as well as the right woman in his universe).
The nice thing is that we don't need to traipse down a yellow brick road in search of a fake wizard. Instead, we walk by faith down the paths of life, knowing that Someone very real knows our needs and provides amply. We walk arm in arm with loving family and friends who are always there to support us and help us.
It looks like this year we should have a Wizard of Oz-themed Halloween. We loved the stage show, Wicked, which is a prequel to The Wizard of Oz. My son even likes to sing songs from it every now and then. A few weeks ago I found some red glittery shoes for my daughter on sale, along with a t-shirt ideal for my little-league star son: it had baseball graphics on it, with the slogan, "There's No Place Like Home." And we don't live in Kansas, but it's that time of year when we have exciting weather in Texas. So it's been on our minds.
Speaking of minds, I figured that I would be the scarecrow: "If I only had a brain" (at least a cancer-free one).
Our prayers have recently turned to my dad, who is having heart surgery this week. Unlike his daughter (the professional patient) my dad has never been hospitalized before, so it's a doozy of an adjustment. I'm hoping that he will feel the same strength and comfort that has carried me through my ordeals, which emanates from the faith and prayers of many.
Dad's situation is sobering, but since I have learned to instinctively extract something light out of heavy situations, it occurred to me that we now have a tin man for our ensemble: "If I only had a heart" (He has a real heart in the good sense, but anatomically speaking, he'd like a disease-free one).
We can't double up our parts, so we have to summon our own courage (which again, is fueled by faith and prayers). The part of the Cowardly Lion remains to be cast. Once in a while we torment my youngest brother, a very eligible bachelor of twenty-six, teasing him about how Brigham Young once declared that an unmarried man of that age was a "menace to society". The reality, of course, is that all good things will happen in their right time and way (as I learned during the long wait for my children). My brother is a good sport, so maybe he'll indulge us and be the guy in the lion costume wishing, "If I only had the nerve" (as well as the right woman in his universe).
The nice thing is that we don't need to traipse down a yellow brick road in search of a fake wizard. Instead, we walk by faith down the paths of life, knowing that Someone very real knows our needs and provides amply. We walk arm in arm with loving family and friends who are always there to support us and help us.
Tuesday, June 26, 2007
Hello from Chemo Land
This is an historic moment...the first time I have blogged while hooked up to an I.V.
The "walking miracle" (my mom's pet name for me) is now sitting in a recliner, receiving ALL of the scheduled chemotherapy, thanks to a full rebound of my white blood cells and platelets. I'm no longer between a rock and a rock, because one of the rocks was moved. (Not a surprise; faith can move mountains, so it can remove a silly obstacle like damaged bone marrow.)
I also managed to dodge my daughter's high fever and virus last week, so that I could remain infection-free. Something hit me pretty hard on Sunday with a cough and terrible sore throat, but it's gone now. The whole path was cleared to make it easy for me to come in and sail through my neuro tests (the three words today were baseball, giraffe, and avocado) and receive my chemo.
I have spent most of the four-hour drip doing work on my laptop, so while I was in the neighborhood I thought I would pop in and give more BIG THANKS for all the faith and prayers that have been offered on my behalf. Once again, it worked!
The "walking miracle" (my mom's pet name for me) is now sitting in a recliner, receiving ALL of the scheduled chemotherapy, thanks to a full rebound of my white blood cells and platelets. I'm no longer between a rock and a rock, because one of the rocks was moved. (Not a surprise; faith can move mountains, so it can remove a silly obstacle like damaged bone marrow.)
I also managed to dodge my daughter's high fever and virus last week, so that I could remain infection-free. Something hit me pretty hard on Sunday with a cough and terrible sore throat, but it's gone now. The whole path was cleared to make it easy for me to come in and sail through my neuro tests (the three words today were baseball, giraffe, and avocado) and receive my chemo.
I have spent most of the four-hour drip doing work on my laptop, so while I was in the neighborhood I thought I would pop in and give more BIG THANKS for all the faith and prayers that have been offered on my behalf. Once again, it worked!
Wednesday, June 20, 2007
In a box
We're halfway through a good news/bad news week.
My son and I completed our first belt test last Friday and we now sport our fashionable yellow belts (good news). Several days later I am still sore, but it was another fun memory moment, and now I feel like I have a big "Livestrong" bracelet around my waist. The karate test felt like the ultimate neuro test, which was reassuring. My son also feels like he accomplished something big. Now - carefully - we are moving on to the orange level.
Our refrigerator/freezer died this weekend (bad news), but on Monday we found a really nice new one on sale, making it affordable to replace both the appliance and all the food that we had to throw out (good news). And to make it even more fun, we got a new refrigerator/freezer BOX! My kids think our home is Disneyworld now, as they transform the huge box into a play house, a tunnel, a castle -- you name it.
My daughter's second birthday is today. In addition to the BOX, which she probably thinks came in her honor, she has some little boxes and packages of gifts to open later today. That's all good news.
My labwork this week had mixed results. This time my white blood cell count has increased to the "borderline normal" range (good news) but it might simply be my body fighting infection already (wouldn't be so good news). So I still have to be careful to avoid getting sick. And my platelet count is also too low. That's not good news. Now I have different precautions to take to avoid bleeding and bruising (as in, no karate class today - bad news - but more time to spend with our daughter on her birthday - good news). It also means that I need a really big rebound, really fast.
When my white cell count was a little low they would still proceed with the Avastin infusion, and I would only risk missing out on the Carboplatin infusion, which is added every other time. But I always rebounded in time, so I haven't had any interruption of this treatment protocol. It was comforting to know that there was a possibility of at least getting some chemotherapy. However, because Avastin puts me at higher risk for bleeding they will suspend all treatment if my platelet count is too low. This is the "between a rock and a rock" situation again, where I am really feeling boxed in. I feel like I'm in an old western movie, where I've just walked into a saloon and the bar-keep says, "choose yer poison" (infection, brain hemorrhage, or untreated tumor running amok).
I'm going in for more labwork on Friday, in the hopes of getting a better result in time for Tuesday's scheduled infusion.
Meanwhile, the good news is that I have learned much from experience. I have learned from experience that things are not always what they seem. My perspective is pretty boxed-in, because I don't have the advantage of knowing how this story will unfold, and what is planned for me. As I pondered my situation I remembered all the times when I had the rebound I needed, right when I needed it. I remembered all the people who let me know I was in their prayers. I remembered my doctor's comment about maybe someday down the road, wondering how long I would even need Avastin treatment, if my MRI's keep looking like they did last time. (Not that we would want to discontinue it prematurely, but surely things would be more dire if the last scan didn't look so good.)
Things may be just fine. Setbacks don't have to mean that I'm destined for the "final box" (the one they bury six-feet deep) anytime soon. They just call for more caution and prayer. Meanwhile, there are many possibilities that lie beyond the box of our limited understanding, and those possibilities are usually good news.
My son and I completed our first belt test last Friday and we now sport our fashionable yellow belts (good news). Several days later I am still sore, but it was another fun memory moment, and now I feel like I have a big "Livestrong" bracelet around my waist. The karate test felt like the ultimate neuro test, which was reassuring. My son also feels like he accomplished something big. Now - carefully - we are moving on to the orange level.
Our refrigerator/freezer died this weekend (bad news), but on Monday we found a really nice new one on sale, making it affordable to replace both the appliance and all the food that we had to throw out (good news). And to make it even more fun, we got a new refrigerator/freezer BOX! My kids think our home is Disneyworld now, as they transform the huge box into a play house, a tunnel, a castle -- you name it.
My daughter's second birthday is today. In addition to the BOX, which she probably thinks came in her honor, she has some little boxes and packages of gifts to open later today. That's all good news.
My labwork this week had mixed results. This time my white blood cell count has increased to the "borderline normal" range (good news) but it might simply be my body fighting infection already (wouldn't be so good news). So I still have to be careful to avoid getting sick. And my platelet count is also too low. That's not good news. Now I have different precautions to take to avoid bleeding and bruising (as in, no karate class today - bad news - but more time to spend with our daughter on her birthday - good news). It also means that I need a really big rebound, really fast.
When my white cell count was a little low they would still proceed with the Avastin infusion, and I would only risk missing out on the Carboplatin infusion, which is added every other time. But I always rebounded in time, so I haven't had any interruption of this treatment protocol. It was comforting to know that there was a possibility of at least getting some chemotherapy. However, because Avastin puts me at higher risk for bleeding they will suspend all treatment if my platelet count is too low. This is the "between a rock and a rock" situation again, where I am really feeling boxed in. I feel like I'm in an old western movie, where I've just walked into a saloon and the bar-keep says, "choose yer poison" (infection, brain hemorrhage, or untreated tumor running amok).
I'm going in for more labwork on Friday, in the hopes of getting a better result in time for Tuesday's scheduled infusion.
Meanwhile, the good news is that I have learned much from experience. I have learned from experience that things are not always what they seem. My perspective is pretty boxed-in, because I don't have the advantage of knowing how this story will unfold, and what is planned for me. As I pondered my situation I remembered all the times when I had the rebound I needed, right when I needed it. I remembered all the people who let me know I was in their prayers. I remembered my doctor's comment about maybe someday down the road, wondering how long I would even need Avastin treatment, if my MRI's keep looking like they did last time. (Not that we would want to discontinue it prematurely, but surely things would be more dire if the last scan didn't look so good.)
Things may be just fine. Setbacks don't have to mean that I'm destined for the "final box" (the one they bury six-feet deep) anytime soon. They just call for more caution and prayer. Meanwhile, there are many possibilities that lie beyond the box of our limited understanding, and those possibilities are usually good news.
Wednesday, June 13, 2007
...and EIGHTEEN!
My baby brother Blake turned twenty-six yesterday (June 12). And then today I realized that June 12 also marks the completion of yet another six-month chunk of survival since my cancer diagnosis. As of yesterday I have survived eighteen months with a cancer that has a median survival range of 9-12 months. I am four months past the ominous fourteen-month mark, which represented the "significantly improved" average survival resulting from the temozolomide clinical trial. I am a few months away from reaching the point where the statistical survival curve tends to stop its sharp drop and flattens out for a while. And I am officially halfway to reaching the "long-term GBM survivor" milestone of three years.
I could still get struck by lightning today (it's severe weather season in North Texas). I could still die from infection, with my immune system in the tank. Or I could die of shame if I keep evolving toward a Howard Hughes germophobe lifestyle. Traffic, unchewed food, aneurysm during Friday's belt test -- you name it -- I have no guarantees. Nobody does. That's why today is the "precious present". That's why I could joke with the nurses in the chemo infusion room this morning. That's why being with my family is always so fun. (Even when my daughter loaded her diaper, pulled it off, and said, "I'm stinky!" -- and thank goodness Daddy was able to take care of it. ) That's why this evening's karate class was exhilirating despite an intense workout. ("Just be grateful that you can do this stuff...and thank goodness for dietary supplements and Purell hand sanitizer, because the place looks nice but smells like feet.")
And just because I've managed to hang on this long doesn't mean that I get to shed the sense of urgency to get things done. I still have lots of work to do. I still have things to put in order. Things to teach my kids. I still wake up early with a to-do list racing through what's left of my head. No sense in procrastinating the things that should be done now, because none of us knows what's around the corner for us -- good or bad.
Of course, maybe the to-do list is helping to keep me alive. My brother Jim told me about a man who outlived his prognosis because he was in the middle of a divorce and didn't want to die until it was finalized (if they were still married when he died, she would get everything). I've heard of many noble reasons to live ("my daughter is getting married next year, and I want to be there," "I'm staying alive to see my son graduate from college," etc.), so it was kind of funny to hear of a case where someone's motivation was spite. My primary motivation is to be with my family--because I like them so much. I want to raise the children who were given to me to raise. I'd also like to serve a church mission with my husband after the kids are grown. And I want to write more books. And, okay, I'd like to earn my black belt, too, and sing Messiah again. And grow really old.
But to be completely honest...when mortality rears its head at me from time to time, those motivators cross my mind only briefly. I will still go on, long afer my body wastes away. Somehow I know that my family will be okay. (Plus I would haunt them anyway, to make sure they were!) And someday we will be reunited and enjoy the blessings of being sealed together for time and eternity. My talents also get to come with me, hopefully to be put to good use. (Maybe I'll get a chance to sing under Handel's direction.)
My bedroom closet, my office, and other household chaos are what actually rise up as motivators, because they are scarier than death itself. The very idea of languishing on my death bed, surrounded by relatives and friends who are tripping over piles of junk to see me, is beyond horrifying. Leaving my poor husband to sort through all this stuff would be awful. If spite can keep someone alive longer, surely chaos screaming for order will buy me a few more months. It puts me in kind of a funny dilemma, though. ("Do I get this all finished and lose a reason to live, or do I keep things a mess and stress out about leaving it that way?")
Of course, I can't ignore the overwhelming number of prayers that have been -- and continue to be -- offered on my behalf. I'm sure those have more "staying power" than worrying about a messy closet. The tremendous faith exercised by so many, and the good will and pleasure of the Lord, have put these other factors (medical technology, favorable conditions, motivation, and a craving for antioxidants) together and blessed them for my benefit. And they will continue to do so for as long as is needful--so keep them coming! Let's try for eighteen years, instead of months!
I could still get struck by lightning today (it's severe weather season in North Texas). I could still die from infection, with my immune system in the tank. Or I could die of shame if I keep evolving toward a Howard Hughes germophobe lifestyle. Traffic, unchewed food, aneurysm during Friday's belt test -- you name it -- I have no guarantees. Nobody does. That's why today is the "precious present". That's why I could joke with the nurses in the chemo infusion room this morning. That's why being with my family is always so fun. (Even when my daughter loaded her diaper, pulled it off, and said, "I'm stinky!" -- and thank goodness Daddy was able to take care of it. ) That's why this evening's karate class was exhilirating despite an intense workout. ("Just be grateful that you can do this stuff...and thank goodness for dietary supplements and Purell hand sanitizer, because the place looks nice but smells like feet.")
And just because I've managed to hang on this long doesn't mean that I get to shed the sense of urgency to get things done. I still have lots of work to do. I still have things to put in order. Things to teach my kids. I still wake up early with a to-do list racing through what's left of my head. No sense in procrastinating the things that should be done now, because none of us knows what's around the corner for us -- good or bad.
Of course, maybe the to-do list is helping to keep me alive. My brother Jim told me about a man who outlived his prognosis because he was in the middle of a divorce and didn't want to die until it was finalized (if they were still married when he died, she would get everything). I've heard of many noble reasons to live ("my daughter is getting married next year, and I want to be there," "I'm staying alive to see my son graduate from college," etc.), so it was kind of funny to hear of a case where someone's motivation was spite. My primary motivation is to be with my family--because I like them so much. I want to raise the children who were given to me to raise. I'd also like to serve a church mission with my husband after the kids are grown. And I want to write more books. And, okay, I'd like to earn my black belt, too, and sing Messiah again. And grow really old.
But to be completely honest...when mortality rears its head at me from time to time, those motivators cross my mind only briefly. I will still go on, long afer my body wastes away. Somehow I know that my family will be okay. (Plus I would haunt them anyway, to make sure they were!) And someday we will be reunited and enjoy the blessings of being sealed together for time and eternity. My talents also get to come with me, hopefully to be put to good use. (Maybe I'll get a chance to sing under Handel's direction.)
My bedroom closet, my office, and other household chaos are what actually rise up as motivators, because they are scarier than death itself. The very idea of languishing on my death bed, surrounded by relatives and friends who are tripping over piles of junk to see me, is beyond horrifying. Leaving my poor husband to sort through all this stuff would be awful. If spite can keep someone alive longer, surely chaos screaming for order will buy me a few more months. It puts me in kind of a funny dilemma, though. ("Do I get this all finished and lose a reason to live, or do I keep things a mess and stress out about leaving it that way?")
Of course, I can't ignore the overwhelming number of prayers that have been -- and continue to be -- offered on my behalf. I'm sure those have more "staying power" than worrying about a messy closet. The tremendous faith exercised by so many, and the good will and pleasure of the Lord, have put these other factors (medical technology, favorable conditions, motivation, and a craving for antioxidants) together and blessed them for my benefit. And they will continue to do so for as long as is needful--so keep them coming! Let's try for eighteen years, instead of months!
Tuesday, June 12, 2007
Things I can and cannot do
Today's lab report: my white blood cell and absolute neutrophil counts are still too low. (Darn!) I am very vulnerable to infection and illness, and I have to take neutropenic precautions. That's bad.
But everything else looks good enough for me to have my Avastin infusion tomorrow. That's good!
So I CAN:
- continue my chemotherapy schedule uninterrupted for now;
- - use this as an excuse to make Prince Jared clean the bathrooms, change our daughter's diapers, and do the laundry;
- go in with my son for our karate belt test on Friday (I guess with a mask on), since I still have platelets and red blood cells; and
- feel less guilty about having a "family only" party for my daughter's birthday this weekend, instead of filling our house with two-year-old's.
But I CANNOT:
- spend a lot of time in public places (should avoid it as much as possible);
- eat raw fruits and veggies or be around flowers and plants (anything grown in dirt)
- be around recently vaccinated or sick people (I break this rule to be near my kids);
- let too much time lapse between hand-washings;
- or do anything else that increases my risk of germs.
I have visions of myself walking around like Michael Jackson with gloves and a mask on, but I guess good nutrition, vitamins, liquids, and rest are a more practical approach.
But hey - at least I CAN proceed with my treatment for now, and I have two whole weeks to try and bounce back before my next infusion.
But everything else looks good enough for me to have my Avastin infusion tomorrow. That's good!
So I CAN:
- continue my chemotherapy schedule uninterrupted for now;
- - use this as an excuse to make Prince Jared clean the bathrooms, change our daughter's diapers, and do the laundry;
- go in with my son for our karate belt test on Friday (I guess with a mask on), since I still have platelets and red blood cells; and
- feel less guilty about having a "family only" party for my daughter's birthday this weekend, instead of filling our house with two-year-old's.
But I CANNOT:
- spend a lot of time in public places (should avoid it as much as possible);
- eat raw fruits and veggies or be around flowers and plants (anything grown in dirt)
- be around recently vaccinated or sick people (I break this rule to be near my kids);
- let too much time lapse between hand-washings;
- or do anything else that increases my risk of germs.
I have visions of myself walking around like Michael Jackson with gloves and a mask on, but I guess good nutrition, vitamins, liquids, and rest are a more practical approach.
But hey - at least I CAN proceed with my treatment for now, and I have two whole weeks to try and bounce back before my next infusion.
Saturday, June 09, 2007
Life flashing before my eyes
Despite my recent "good news" MRI scan, I thought I was going to die this weekend.
For one thing, it just so happened that while my white blood cell count was tanking, my two children both got sick. Jacob started coughing and sneezing and complaining of ear pain, and Emma spent the day with me on Friday with a low-grade fever and diarrhea. And to boot, I have not been able to sleep more than five hours before I awaken to a rush of adrenaline and a flurry of things to think about. Foremost in my thoughts are, "Hey, you know, being sleep-deprived is bad for the immune system. Guess I'll sit and stew on that instead of sleeping." So I'm wondering what could possibly be incubating in my wussy immune system, waiting to take me down.
On top of that, I started having rushes of adrenaline that felt like a seizure coming on again. Thankfully it's been so long since I "seized the day", that I can't remember for sure if it's a seizure or if it's some kind of anxiety attack. But on Thursday night it was so bad that I was actually surprised to fall asleep and wake up alive instead of just losing consciousness.
The good news is that I didn't die. (Or at least, I haven't as of the writing of this post.) Instead, I noticed my life flashing before my eyes, which is something that people will often report when they encounter a brush with mortality.
It may actually have nothing to do with thinking I would die, but may actually have germinated a few weeks ago when my dad brought over the old home movies. I saw my first birthday, several Christmases, my horse, and many family gatherings. We also found a videotape of a 1930's radio show performance that we re-created with friends and took to several senior communities back in 1994. (I had to impersonate Kate Smith, singing "Alexander's Ragtime Band.") These were fun flashes that probably put me in that retrospective mode.
Last night we watched The Karate Kid, which took me back to my early college years. I always remember one of my college roommates when I see this movie, because she always tried her best to mimic Mr. Miyagi's quotes, and it made me laugh.
Right next to our game room (where we watch movies) I have my dollhouse sitting on a ledge at the top of our staircase. When I was a kid I was really into dollhouses, and last year it was one of my many sentimental indulgences, finally getting a house for all the miniature furniture and dolls that have followed me around in boxes for decades. It was fun to pause and reflect as I gazed upon it last night.
I spent this morning (early) doing some writing for my next book. Part of it was spent reviewing some past experiences and writings.
About four hours later I noticed my husband getting the kids dressed, and I realized that it was time for my son's baseball game. (I also remembered that I was the snack mom, and thankfully we happened to have enough juice boxes and snack crackers and apples sitting around, so we didn't have to make a mad dash for the store.) Watching my son play baseball is one of my favorite activities. It always takes me back to when his birth mother told us that he would be an athlete. She was right. And I remember those early days of my son's athletic career three years ago. (He is six years old now.) It also reminds me of how baseball was my favorite sport as a young tomboy. If I didn't have to avoid getting beaned on the head I'd be playing it somewhere now.
Today was also the anniversary of my son's temple sealing to our family. He was not yet three months old when he was sealed to us. After the baseball game today we stopped by the Dallas temple grounds and snapped some family pictures. We looked silly standing next to the temple in our Yankees baseball regalia, but it was still fun to be there. We saw a wedding party taking pictures on the grounds, and I was transported momentarily to my own wedding day. Then I spent some time thinking about Jacob's sealing day, and how cute he was as a little baby in his little white suit. I hope that someday when he is grown, he will spend enough time in the temple to learn the significance of the sealing ordinance.
On the way home from the temple we stopped by Tuesday Morning, one of my favorite stores. As we browsed I noticed a bunch of retired Madame Alexander dolls on sale. I did my family's early birthday shopping for me, because I am a huge Madame Alexander doll fan. My dad gave me many of them as a child, and unfortunately I treated them a lot like my Barbie dolls. I cut some of their hair. I would swap outfits among the dolls. I lost some of the shoes and accessories. I role played my favorite stories with them. As I got older I started taking better care of them, and the evolution of my doll collecting history is displayed in my entryway curio. One of my earlier victims was a Madame Alexander "Greece" doll. My great-grandfather is from Greece, so I liked having a doll representing that country. Unfortunately, I liked it a little too much as a kid and so it is not exactly in mint condition anymore. To my delight, one of the dolls I saw on sale was a newer (but still retired) version of the "Greece" doll. In the cart it went. I also managed to get "Sweden" (never had a Madame Alexander "Sweden", but I also descend from Swedes and I have an old/one-legged/one-armed doll that I think was purchased in Sweden); and I also found a cute "Betsy Ross", complete with accessory flag, which I decided was a must-have (after all, next week is Flag Day).
By this afternoon I was pretty tired, but early this evening we headed to our church talent show. My son had practiced one of his favorite songs from school, but he chickened out at the last minute, so I sang "Two Little Shoes" to him instead. And my husband and I donned our clogging shoes and gave "Duelling Banjos" another whirl again. I was back in my high school days again. (Just older and fatter.) I even put ponytails in my hair, which is something I hadn't done in over three decades.
Finally, a big pile of "organization" project stuff had an avalanche in our bedroom. The biggest part of the avalanche (and thankfully an unharmed one) was the wicker trunk containing the remains of Big Bear. (I hear the collective groan from my family members.)
Big Bear is a huge teddy bear that I received when I was two or three years old. I have a cute picture of little me holding Big Bear when he was new (at the time, Big Bear was bigger than me). Since then, Big Bear's fur has completely worn off, he ripped during a pillow fight with my cousin when I was ten, and he was too rotted to sew back together. So he lost a lot of stuffing, and what's left of him is jammed into a kid's size BYU sweatsuit that is safety-pinned to hold him together. He looks pretty nasty, but he was a good teddy bear who served as my companion and my comfort at home, at sleepovers, at camp, and even at college, until I got married (it's no surprise, then, that I call my husband "Bear"). So this ragged flea trap that represents many years of TLC (I'm talking about Big Bear, not husband-Bear) is mummified in its wicker crypt, because it's too ugly and fragile to be useful. But I can't possibly throw it away. (It's like pumping gas. Why do it now, when I've stubbornly refused to for this many years?) My husband would love nothing more than to be rid of it, but he has endured having Big Bear still around in his wicker crypt (just like he always makes sure I have gas in my car). I told him that the only acceptable way to get rid of Big Bear is to bury me with him. But luckily I didn't die this weekend, and I hope Big Bear's great fall during the junky room avalanche was not a foreboding.
Little flashes of life during this weekend that seemed touch-and-go at times. I was happy to have the vitality necessary to do all this stuff, the ability to remember so many moments of life, and the hope of building more flashes in the days, weeks, months, and years to come.
For one thing, it just so happened that while my white blood cell count was tanking, my two children both got sick. Jacob started coughing and sneezing and complaining of ear pain, and Emma spent the day with me on Friday with a low-grade fever and diarrhea. And to boot, I have not been able to sleep more than five hours before I awaken to a rush of adrenaline and a flurry of things to think about. Foremost in my thoughts are, "Hey, you know, being sleep-deprived is bad for the immune system. Guess I'll sit and stew on that instead of sleeping." So I'm wondering what could possibly be incubating in my wussy immune system, waiting to take me down.
On top of that, I started having rushes of adrenaline that felt like a seizure coming on again. Thankfully it's been so long since I "seized the day", that I can't remember for sure if it's a seizure or if it's some kind of anxiety attack. But on Thursday night it was so bad that I was actually surprised to fall asleep and wake up alive instead of just losing consciousness.
The good news is that I didn't die. (Or at least, I haven't as of the writing of this post.) Instead, I noticed my life flashing before my eyes, which is something that people will often report when they encounter a brush with mortality.
It may actually have nothing to do with thinking I would die, but may actually have germinated a few weeks ago when my dad brought over the old home movies. I saw my first birthday, several Christmases, my horse, and many family gatherings. We also found a videotape of a 1930's radio show performance that we re-created with friends and took to several senior communities back in 1994. (I had to impersonate Kate Smith, singing "Alexander's Ragtime Band.") These were fun flashes that probably put me in that retrospective mode.
Last night we watched The Karate Kid, which took me back to my early college years. I always remember one of my college roommates when I see this movie, because she always tried her best to mimic Mr. Miyagi's quotes, and it made me laugh.
Right next to our game room (where we watch movies) I have my dollhouse sitting on a ledge at the top of our staircase. When I was a kid I was really into dollhouses, and last year it was one of my many sentimental indulgences, finally getting a house for all the miniature furniture and dolls that have followed me around in boxes for decades. It was fun to pause and reflect as I gazed upon it last night.
I spent this morning (early) doing some writing for my next book. Part of it was spent reviewing some past experiences and writings.
About four hours later I noticed my husband getting the kids dressed, and I realized that it was time for my son's baseball game. (I also remembered that I was the snack mom, and thankfully we happened to have enough juice boxes and snack crackers and apples sitting around, so we didn't have to make a mad dash for the store.) Watching my son play baseball is one of my favorite activities. It always takes me back to when his birth mother told us that he would be an athlete. She was right. And I remember those early days of my son's athletic career three years ago. (He is six years old now.) It also reminds me of how baseball was my favorite sport as a young tomboy. If I didn't have to avoid getting beaned on the head I'd be playing it somewhere now.
Today was also the anniversary of my son's temple sealing to our family. He was not yet three months old when he was sealed to us. After the baseball game today we stopped by the Dallas temple grounds and snapped some family pictures. We looked silly standing next to the temple in our Yankees baseball regalia, but it was still fun to be there. We saw a wedding party taking pictures on the grounds, and I was transported momentarily to my own wedding day. Then I spent some time thinking about Jacob's sealing day, and how cute he was as a little baby in his little white suit. I hope that someday when he is grown, he will spend enough time in the temple to learn the significance of the sealing ordinance.
On the way home from the temple we stopped by Tuesday Morning, one of my favorite stores. As we browsed I noticed a bunch of retired Madame Alexander dolls on sale. I did my family's early birthday shopping for me, because I am a huge Madame Alexander doll fan. My dad gave me many of them as a child, and unfortunately I treated them a lot like my Barbie dolls. I cut some of their hair. I would swap outfits among the dolls. I lost some of the shoes and accessories. I role played my favorite stories with them. As I got older I started taking better care of them, and the evolution of my doll collecting history is displayed in my entryway curio. One of my earlier victims was a Madame Alexander "Greece" doll. My great-grandfather is from Greece, so I liked having a doll representing that country. Unfortunately, I liked it a little too much as a kid and so it is not exactly in mint condition anymore. To my delight, one of the dolls I saw on sale was a newer (but still retired) version of the "Greece" doll. In the cart it went. I also managed to get "Sweden" (never had a Madame Alexander "Sweden", but I also descend from Swedes and I have an old/one-legged/one-armed doll that I think was purchased in Sweden); and I also found a cute "Betsy Ross", complete with accessory flag, which I decided was a must-have (after all, next week is Flag Day).
By this afternoon I was pretty tired, but early this evening we headed to our church talent show. My son had practiced one of his favorite songs from school, but he chickened out at the last minute, so I sang "Two Little Shoes" to him instead. And my husband and I donned our clogging shoes and gave "Duelling Banjos" another whirl again. I was back in my high school days again. (Just older and fatter.) I even put ponytails in my hair, which is something I hadn't done in over three decades.
Finally, a big pile of "organization" project stuff had an avalanche in our bedroom. The biggest part of the avalanche (and thankfully an unharmed one) was the wicker trunk containing the remains of Big Bear. (I hear the collective groan from my family members.)
Big Bear is a huge teddy bear that I received when I was two or three years old. I have a cute picture of little me holding Big Bear when he was new (at the time, Big Bear was bigger than me). Since then, Big Bear's fur has completely worn off, he ripped during a pillow fight with my cousin when I was ten, and he was too rotted to sew back together. So he lost a lot of stuffing, and what's left of him is jammed into a kid's size BYU sweatsuit that is safety-pinned to hold him together. He looks pretty nasty, but he was a good teddy bear who served as my companion and my comfort at home, at sleepovers, at camp, and even at college, until I got married (it's no surprise, then, that I call my husband "Bear"). So this ragged flea trap that represents many years of TLC (I'm talking about Big Bear, not husband-Bear) is mummified in its wicker crypt, because it's too ugly and fragile to be useful. But I can't possibly throw it away. (It's like pumping gas. Why do it now, when I've stubbornly refused to for this many years?) My husband would love nothing more than to be rid of it, but he has endured having Big Bear still around in his wicker crypt (just like he always makes sure I have gas in my car). I told him that the only acceptable way to get rid of Big Bear is to bury me with him. But luckily I didn't die this weekend, and I hope Big Bear's great fall during the junky room avalanche was not a foreboding.
Little flashes of life during this weekend that seemed touch-and-go at times. I was happy to have the vitality necessary to do all this stuff, the ability to remember so many moments of life, and the hope of building more flashes in the days, weeks, months, and years to come.
Wednesday, June 06, 2007
The Bubble Girl
I wish this meant I was just a fairy princess who transports herself around via bubble. But it doesn't.
Last week's results were so wonderful, but today I still need LOTS of prayers! They have me doing weekly labs now, and yesterday's test results came back today pretty bad. My white blood cell and neutrophil counts are really low, so I have to take extra precautions to avoid infection, and I have to hope and pray for another miraculous bounce-back. They will test again next week before my scheduled Avastin infusion, and if I am still low (or if I have gotten sick) my treatment will be suspended. That would be awful, since it's been working so darn well.
So I'm being the bubble girl, trying to quarantine myself from illness. It's tricky with kids and camps and allergy season and insomnia and stuff. But I keep hand sanitizer close by and take my vitamins and one of these days I'll be sure to get enough rest. And I'm leaning on prayer again, so please keep them coming!
Last week's results were so wonderful, but today I still need LOTS of prayers! They have me doing weekly labs now, and yesterday's test results came back today pretty bad. My white blood cell and neutrophil counts are really low, so I have to take extra precautions to avoid infection, and I have to hope and pray for another miraculous bounce-back. They will test again next week before my scheduled Avastin infusion, and if I am still low (or if I have gotten sick) my treatment will be suspended. That would be awful, since it's been working so darn well.
So I'm being the bubble girl, trying to quarantine myself from illness. It's tricky with kids and camps and allergy season and insomnia and stuff. But I keep hand sanitizer close by and take my vitamins and one of these days I'll be sure to get enough rest. And I'm leaning on prayer again, so please keep them coming!
Sunday, June 03, 2007
Never thought of this before...
...but it came to mind this weekend as we had a family celebration for the naming and blessing of our new niece, who is just a few weeks old.
Little Zoe is so cute and adorable, but as all babies do, she cries when she's hungry or gassy or whatever. I'm sure she is just so fresh from heaven and getting used to navigating her spirit in this new little body and experiencing all kinds of feelings that she isn't used to. And I never thought of this before, but I was thinking how ironic it is that when babies are born, everyone is so happy but the baby does a lot of crying. Then the baby learns to turn to her parents for love, and she starts to discover all the wonderful things about life, and instinctively wants to cling to life.
Later (hopefully a lot later), when someone dies, it's the opposite. They lay aside their mortal cares and their worn-out bodies. They reportedly feel free, happy, and peaceful, and everyone else is doing the crying.
Fortunately, depending on where we are in this spectrum we can look forward to the promise found in Revelations 21:4:
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
Little Zoe is so cute and adorable, but as all babies do, she cries when she's hungry or gassy or whatever. I'm sure she is just so fresh from heaven and getting used to navigating her spirit in this new little body and experiencing all kinds of feelings that she isn't used to. And I never thought of this before, but I was thinking how ironic it is that when babies are born, everyone is so happy but the baby does a lot of crying. Then the baby learns to turn to her parents for love, and she starts to discover all the wonderful things about life, and instinctively wants to cling to life.
Later (hopefully a lot later), when someone dies, it's the opposite. They lay aside their mortal cares and their worn-out bodies. They reportedly feel free, happy, and peaceful, and everyone else is doing the crying.
Fortunately, depending on where we are in this spectrum we can look forward to the promise found in Revelations 21:4:
And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.
Wednesday, May 30, 2007
Hope
Someone in my 2ofus4now support group had a question about hope, and I shared with her the following poem written by someone who survived GBM for eleven years (on old technology!). I couldn't resist sharing it here:
HOPE
Hope is hope, a feeling of trust,
Against all odds, we do what we must.
Hope is a confident expectation,
Not a guarantee of a realisation.
It thrives in the soul, beats in the heart,
But Oh what strength it does impart.
There is nothing false about this feeling,
It has no limit, it has no ceiling.
Hope inspires determination,
To reach a dream with anticipation.
No you cannot infuse it,
You cannot draw it into a vial and use it.
You cannot measure it by RADS,
or take its pulse when you're tired or sad.
But drink it is with great desire,
it's medicinal power can raise you higher.
Hope is truly free insurance,
it indemnifies with utmost assurance.
Hope rises above deep despair,
It lifts the hearts of those who care.
It isnt a panacea or cure for every ill,
It is a source of optimism, a place to find your will.
When stress and fear are set in motion,
Hope proves true as a stronger emotion.
No you dare not deny it,
You must not defy it.
Eternal they say it springs,
Of promises it softly sings.
It cannot be false, any more than false sorrow,
It's basic belief is 'There's always tomorrow'.
If hope is false, then surely I guess,
There must be false hopelessness.
What would it mean to have false hopelessness?
Perhaps that indeed it was true hopefullness.
So let's turn it around, or inside out,
Because hope is something we can't live without.
HOPE
Hope is hope, a feeling of trust,
Against all odds, we do what we must.
Hope is a confident expectation,
Not a guarantee of a realisation.
It thrives in the soul, beats in the heart,
But Oh what strength it does impart.
There is nothing false about this feeling,
It has no limit, it has no ceiling.
Hope inspires determination,
To reach a dream with anticipation.
No you cannot infuse it,
You cannot draw it into a vial and use it.
You cannot measure it by RADS,
or take its pulse when you're tired or sad.
But drink it is with great desire,
it's medicinal power can raise you higher.
Hope is truly free insurance,
it indemnifies with utmost assurance.
Hope rises above deep despair,
It lifts the hearts of those who care.
It isnt a panacea or cure for every ill,
It is a source of optimism, a place to find your will.
When stress and fear are set in motion,
Hope proves true as a stronger emotion.
No you dare not deny it,
You must not defy it.
Eternal they say it springs,
Of promises it softly sings.
It cannot be false, any more than false sorrow,
It's basic belief is 'There's always tomorrow'.
If hope is false, then surely I guess,
There must be false hopelessness.
What would it mean to have false hopelessness?
Perhaps that indeed it was true hopefullness.
So let's turn it around, or inside out,
Because hope is something we can't live without.
-- Rebecca Libutti, from That's Unacceptable (2001)
Believable!
As if yesterday's good news wasn't good enough...
I showed up for my infusion this morning and found out that I could get the full infusion (both Avastin and Carboplatin) because my lab results from yesterday were GREAT! My platelet levels jumped from 85K to 215K in just a few days! All the other counts were well within range. The way my bone marrow has bounced back (twice now) so quickly has been a welcome miracle.
As I headed toward the infusion room my oncologist called me into her office. She wanted to report to me that since our visit yesterday she had the chance to review the spectroscopy report from yesterday's MRI, and it was as she had expected: "Low perfusion; consistent with treatment effect." So it looks like the reason the blob hasn't changed much lately might be that it is scar tissue.
I'm having an Arnold Schwarzenegger/Kindergarten Cop moment: "It's not a tumor!"
Granted, there are still probably microscopic tumor cells floating around, waiting to get nasty. But so far they have been held at bay. Things are as good as they can be right now, and we are very grateful!
My first thought was, WOW - UNBELIEVABLE! But then I realized that, no, this is actually very BELIEVABLE. It's not like this is the first time I've seen miracles. It's not the first time I've experienced the power of prayer.
I guess this just isn't the time for me to go anywhere yet. For a while this morning I was wondering if I was going to have a moment of great irony as I sat in the infusion room, receiving chemotherapy in a chair right by the window as a really big thunderstorm blew through the area. I thought, "This would be funny -- getting a great MRI result and then biting it when the storm blows a window into my head!" But luckily it passed without incident. And I managed to successfully dodge all the crazy traffic on the way home.
I'm eager to know and do what is meant for me while I get to stay here. I hope it involves raising my kiddos until they are very old, since they were my earlier taste of miracles. It surely should involve finally getting some of the rooms in my house organized, because there are some areas that are really becoming...unbelievable!
I showed up for my infusion this morning and found out that I could get the full infusion (both Avastin and Carboplatin) because my lab results from yesterday were GREAT! My platelet levels jumped from 85K to 215K in just a few days! All the other counts were well within range. The way my bone marrow has bounced back (twice now) so quickly has been a welcome miracle.
As I headed toward the infusion room my oncologist called me into her office. She wanted to report to me that since our visit yesterday she had the chance to review the spectroscopy report from yesterday's MRI, and it was as she had expected: "Low perfusion; consistent with treatment effect." So it looks like the reason the blob hasn't changed much lately might be that it is scar tissue.
I'm having an Arnold Schwarzenegger/Kindergarten Cop moment: "It's not a tumor!"
Granted, there are still probably microscopic tumor cells floating around, waiting to get nasty. But so far they have been held at bay. Things are as good as they can be right now, and we are very grateful!
My first thought was, WOW - UNBELIEVABLE! But then I realized that, no, this is actually very BELIEVABLE. It's not like this is the first time I've seen miracles. It's not the first time I've experienced the power of prayer.
I guess this just isn't the time for me to go anywhere yet. For a while this morning I was wondering if I was going to have a moment of great irony as I sat in the infusion room, receiving chemotherapy in a chair right by the window as a really big thunderstorm blew through the area. I thought, "This would be funny -- getting a great MRI result and then biting it when the storm blows a window into my head!" But luckily it passed without incident. And I managed to successfully dodge all the crazy traffic on the way home.
I'm eager to know and do what is meant for me while I get to stay here. I hope it involves raising my kiddos until they are very old, since they were my earlier taste of miracles. It surely should involve finally getting some of the rooms in my house organized, because there are some areas that are really becoming...unbelievable!
Tuesday, May 29, 2007
I'm Olivia
One of my favorite characters on The Cosby Show was the precocious little Olivia (Denice's stepdaughter). When people would ask Olivia how she was doing, she would respond, "I'm still alive!"
Olivia is also one of my favorite characters in children's literature. This Olivia is a very girlie pig with boundless energy and an inshakable confidence in her ability to do anything. Between these two adorable characters, I have often regretted not naming my daughter Olivia.
I though of The Cosby Show's Olivia after leaving my doctor's office today. I'm still alive! And despite the efforts of the van that almost cut us off on the freeway driving home, I might actually get to stay alive for a little while!
The MRI scan was "good". My brain looks the same as it has for months now, with a tiny little spot on it. It's not known, but it's possible that maybe only scar tissue is left instead of a tumor. Or whatever it is, it doesn't appear to be growing or spreading or doing anything, at least. My doctor was very optomistic as she chatted with me. She confirmed that I was "knee-deep" (NEDP=No Evidence of Disease Progression).
We repeated my lab tests afterward, and depending on how they go I will either go in for a full Avastin/Carboplatin infusion, or just an Avastin infusion (which is less harmful to bone marrow). The latter is what we would do as a maintenance plan after a year. Based on how my MRI's are looking, my doctor didn't seem concerned about postponing the full infusion for now. And in fact, she even suggested that maybe the future could hold the possibility of getting to the point where we have to decide how long to stay on maintenance, if I remain in a NEDP situation. It was a good thing.
Once again, prayers on my behalf have helped me get this kind of result, and they also sustained me during the anxious moments of waiting to hear the result. Huge thanks to everyone who offered those prayers, so that we could spend this evening celebrating! And I can be my own "Olivia" -- still alive and energetic, and confidently anticipating all kinds of possibilities.
Olivia is also one of my favorite characters in children's literature. This Olivia is a very girlie pig with boundless energy and an inshakable confidence in her ability to do anything. Between these two adorable characters, I have often regretted not naming my daughter Olivia.
I though of The Cosby Show's Olivia after leaving my doctor's office today. I'm still alive! And despite the efforts of the van that almost cut us off on the freeway driving home, I might actually get to stay alive for a little while!
The MRI scan was "good". My brain looks the same as it has for months now, with a tiny little spot on it. It's not known, but it's possible that maybe only scar tissue is left instead of a tumor. Or whatever it is, it doesn't appear to be growing or spreading or doing anything, at least. My doctor was very optomistic as she chatted with me. She confirmed that I was "knee-deep" (NEDP=No Evidence of Disease Progression).
We repeated my lab tests afterward, and depending on how they go I will either go in for a full Avastin/Carboplatin infusion, or just an Avastin infusion (which is less harmful to bone marrow). The latter is what we would do as a maintenance plan after a year. Based on how my MRI's are looking, my doctor didn't seem concerned about postponing the full infusion for now. And in fact, she even suggested that maybe the future could hold the possibility of getting to the point where we have to decide how long to stay on maintenance, if I remain in a NEDP situation. It was a good thing.
Once again, prayers on my behalf have helped me get this kind of result, and they also sustained me during the anxious moments of waiting to hear the result. Huge thanks to everyone who offered those prayers, so that we could spend this evening celebrating! And I can be my own "Olivia" -- still alive and energetic, and confidently anticipating all kinds of possibilities.
Saturday, May 26, 2007
Here we go again
This happened right before my last MRI, and it has happened again: bad lab results.
My bone marrow is under attack again, and my platelet count is too low for them to allow my chemo infusion next week. Everything else is borderline, and my doctor hinted last time that I may not be able to continue chemotherapy much longer.
However, they will do more lab testing again on Tuesday, and hopefully I'll have a rebound. I rebounded quickly last time in a big way that according to my brother Dr. Jim, "has no medical explanation." Once again prayers were working on my behalf, and they are needed again.
This Tuesday's MRI also carries the ghost of October's scan. Once again we are doing an MRI with spectroscopy. Last time it revealed tumor progression. I'm hoping that won't be a repeat occurrence. If I were in charge of the miracles, I'd be going for an MRI that shows the opposite: a completely disease-free brain that doesn't need chemotherapy anymore.
But I'm not in charge of the miracles. I don't know what should be for me, but Someone else does. Someone whose plan for me is a plan of happiness. Someone who has a perfect and grand perspective.
Prince Jared and I went to the temple last night, and as we drove there we listened to a group called Libera singing "Be Still, My Soul". And throughout the evening I kept thinking of one particular phrase in that hymn: "Leave to thy God to order and provide."
Whether it's bone marrow, a healthy brain, or peace to handle adversity, God will order and provide whatever is needful and expedient for his purposes for me.
He always has, and so here we go again...
My bone marrow is under attack again, and my platelet count is too low for them to allow my chemo infusion next week. Everything else is borderline, and my doctor hinted last time that I may not be able to continue chemotherapy much longer.
However, they will do more lab testing again on Tuesday, and hopefully I'll have a rebound. I rebounded quickly last time in a big way that according to my brother Dr. Jim, "has no medical explanation." Once again prayers were working on my behalf, and they are needed again.
This Tuesday's MRI also carries the ghost of October's scan. Once again we are doing an MRI with spectroscopy. Last time it revealed tumor progression. I'm hoping that won't be a repeat occurrence. If I were in charge of the miracles, I'd be going for an MRI that shows the opposite: a completely disease-free brain that doesn't need chemotherapy anymore.
But I'm not in charge of the miracles. I don't know what should be for me, but Someone else does. Someone whose plan for me is a plan of happiness. Someone who has a perfect and grand perspective.
Prince Jared and I went to the temple last night, and as we drove there we listened to a group called Libera singing "Be Still, My Soul". And throughout the evening I kept thinking of one particular phrase in that hymn: "Leave to thy God to order and provide."
Whether it's bone marrow, a healthy brain, or peace to handle adversity, God will order and provide whatever is needful and expedient for his purposes for me.
He always has, and so here we go again...
Tuesday, May 22, 2007
Real Moments
When I was sixteen my friend gave me a book called Real Women Don't Pump Gas: A Guide to All That Is Divinely Feminine. I liked that book so much, that to this day I have never pumped gas. Gotta be a real woman.
As an adoptive mother I often hear the term "real mom". As in, "What does Jacob's real mom look like?" "Is Emma's real mom tall?" and so on. I usually just respond with a smile and describe myself in detail. We love the birth mothers of our children. They gave our children life and beautiful healthy bodies, and lovingly placed them in our family, trusting that we would give these children all that they needed. And when they did that, they made us a "real" family--something that doesn't require the sharing of DNA.
The Velveteen Rabbit is a lovely children's story about a plush rabbit who becomes real, not by how he was made, but by the fact that he was loved.
The Real Women Don't Pump Gas (etc.) book has a chapter on Real Moms, including the following wisdom:
As an adoptive mother I often hear the term "real mom". As in, "What does Jacob's real mom look like?" "Is Emma's real mom tall?" and so on. I usually just respond with a smile and describe myself in detail. We love the birth mothers of our children. They gave our children life and beautiful healthy bodies, and lovingly placed them in our family, trusting that we would give these children all that they needed. And when they did that, they made us a "real" family--something that doesn't require the sharing of DNA.
The Velveteen Rabbit is a lovely children's story about a plush rabbit who becomes real, not by how he was made, but by the fact that he was loved.
The Real Women Don't Pump Gas (etc.) book has a chapter on Real Moms, including the following wisdom:
- Real Moms do volunteer work.
- Real Moms wear corsages.
- Real Moms believe in nepotism.
- Real Moms have ESP and know when their children are in trouble.
- Real Moms like the suburbs. They decorate their homes for the holidays.
- Real Moms wear earrings during the day.
- A Real Mom will go through the trash when a kid announces that he thinks he threw his bite plate in the wastepaper basket.
- Real Moms are never allergic to anything their children like. A real Real Mom will live with a cat that makes her sneeze for ten years. But if anyone suggests that her new, prized, expensive sectional sofa could make one of her children tear up for an instant, it would be on its way to Goodwill within the hour.
And Erma Bombeck, who was an adoptive mother, made her own list of what is "real":
- Real is what gets a part-time job to pay for a baton that lights up.
- Real is what hears, "I hate you" and still says "No".
- Real is what sits up until 3 AM when she has the car out and its raining.
- Real is hurting when she's in pain and laughing when she's happy.
- Real is emergency rooms, PTA's, music that deafens, lies, defiance, and slammed doors.
- Real is what shows up every day!
I was thinking about Erma Bombeck today when I had my own "real" moment to add to the list. For me this morning, "real" was running 1/2 mile to and from the elementary school on a day that threatened rain, wearing a purple and black outfit with feet crammed into too-tight, high-heeled sandals and toting a video camera, tripod, and various props so that I could be my son's magic assistant during his kindergarten talent show. It was awesome!
Not only was it a reassuring neuro test (kept my balance, remembered where to go and what my name was at the sign-in desk, remembered how to set up the tripod and the camera, and even remembered the magic tricks) but it was a REAL-ly precious moment to see my son be a gentleman in the audience while the other children performed, and then to help him do his charming act onstage. He pushed a coin through a handkerchief, turned a dollar bill upside-down with a folding trick, and pulled three flower boxes out of an empty paper sack. (Much thanks to his real Grandpa Ralston and his real Uncle Mike, who both taught him those tricks.)
The cancer glasses have the great ability to help sort out what is real and what is not, and it makes those real moments very precious. This morning's entertainment was hardly a Tony award-winning stage experience. But it was real. The expression on my son's face when he saw me walk in was very real and very precious.
I hope I will be there to walk in for many more real moments in his life.
Thursday, May 17, 2007
Live Strong & Kiss Good
May 17 is Livestrong Day, the day Lance Armstrong marks as the anniversary of the day he "started living". (The day he was diagnosed with cancer.) Despite always having cancer on my mind (literally), I kinda forgot about Livestrong Day, because I always remember May 17 as my "kiss-a-versary".
Today marks 24 years from our third date, when Prince Jared planted his first smooch on me at my doorstep. We were friends for a long time before that, and I had been mooning after him for about six months. I guess he finally decided to be in love with me, too.
In a way, May 17 was the start of our life together as sweethearts. Nearly a quarter century later it is still a date that we both remember and celebrate. Nearly a quarter century later Prince Jared can still sweep me off my feet with his smooches.
They keep me living strong.
Today marks 24 years from our third date, when Prince Jared planted his first smooch on me at my doorstep. We were friends for a long time before that, and I had been mooning after him for about six months. I guess he finally decided to be in love with me, too.
In a way, May 17 was the start of our life together as sweethearts. Nearly a quarter century later it is still a date that we both remember and celebrate. Nearly a quarter century later Prince Jared can still sweep me off my feet with his smooches.
They keep me living strong.
Thursday, May 10, 2007
Barbie does Dallas
AAAAAAAAGH! Did that actually come off my fingertips? Should I blame the tumor? That sounds too awful! (Suggestions please for a new title!!)
Book Signing Barbie has been invited to do another signing event at Moon's LDS Bookstore in Dallas (northwest corner of Forest and Preston) from 2:00 - 4:00 this Saturday. It'll be a fun transformation from Baseball Mom Barbie (complete with a pink Yankees t-shirt for cheering on my favorite six-year-old Yankee) to Room-a-Zoom Barbie (accessorized with a seat belt and hoping not to have any interaction with Traffic Cop Ken) to Book Signing Barbie in a frantic half-hour from game time in Plano to signing time in Dallas. (I'm so bad--I'm actually hoping that the game gets rained out!)
Hope to see lots of blog readers at the store!
Book Signing Barbie has been invited to do another signing event at Moon's LDS Bookstore in Dallas (northwest corner of Forest and Preston) from 2:00 - 4:00 this Saturday. It'll be a fun transformation from Baseball Mom Barbie (complete with a pink Yankees t-shirt for cheering on my favorite six-year-old Yankee) to Room-a-Zoom Barbie (accessorized with a seat belt and hoping not to have any interaction with Traffic Cop Ken) to Book Signing Barbie in a frantic half-hour from game time in Plano to signing time in Dallas. (I'm so bad--I'm actually hoping that the game gets rained out!)
Hope to see lots of blog readers at the store!
A time to be born
Today was a happy day -- it was time for my new niece to be born! My "middle liddle brother", Mike, and his wife Melanie have been staying with us for a few months between his MBA graduation and the start of his new job in Charlotte this summer, so that she could deliver their first baby here in familiar territory. It has been really nice having them around, and when I first learned that the baby was due in May I was hoping to still be around to welcome her into our family. (And I was -- hooray!)
The name of this tiny, beautiful little girl has yet to be determined. My son came with me to the hospital to see his new cousin, and he was in awe at the sight of such a new little person.
This event reminds me that for each of us there is a time to be born, a time to live, and a time to die. It took a long time for me to be a mom, and I think it is because my children needed to come at a certain time and in a certain way. Before then, it just wasn't going to happen. But when the time was right, the miracles occurred. Likewise, there were times during Melanie's pregnancy when she had cause for concern, but thankfully it was this little girl's time to be born, and she was able to overcome every obstacle.
I think the other end of life is similar. I always remember the scene in Forrest Gump, when he confronts his mother, who is dying. Forrest asks her why she is dying, and she responds very simply, "It's my time. It's just my time." I think that as long as I need to be here, I will continue to enjoy each new day and (thanks to the many prayers on my behalf) I also get to enjoy each accompanying miracle. And when it is my time to die, I don't think even the best of medical advancements will keep me here. (We'll certainly try, but even miracles are subject to God's will and design.)
As for today, it's my time to live and enjoy my niece's time to be born. It is time to enjoy seeing my brother and sister-in-law go through this exciting new chapter in their life together. It is time to watch my son marvel at the miracle of life, and to remember how we felt the day he was born. It is a time to remember that all things happen in their proper time and season, in accordance with a loving plan.
The name of this tiny, beautiful little girl has yet to be determined. My son came with me to the hospital to see his new cousin, and he was in awe at the sight of such a new little person.
This event reminds me that for each of us there is a time to be born, a time to live, and a time to die. It took a long time for me to be a mom, and I think it is because my children needed to come at a certain time and in a certain way. Before then, it just wasn't going to happen. But when the time was right, the miracles occurred. Likewise, there were times during Melanie's pregnancy when she had cause for concern, but thankfully it was this little girl's time to be born, and she was able to overcome every obstacle.
I think the other end of life is similar. I always remember the scene in Forrest Gump, when he confronts his mother, who is dying. Forrest asks her why she is dying, and she responds very simply, "It's my time. It's just my time." I think that as long as I need to be here, I will continue to enjoy each new day and (thanks to the many prayers on my behalf) I also get to enjoy each accompanying miracle. And when it is my time to die, I don't think even the best of medical advancements will keep me here. (We'll certainly try, but even miracles are subject to God's will and design.)
As for today, it's my time to live and enjoy my niece's time to be born. It is time to enjoy seeing my brother and sister-in-law go through this exciting new chapter in their life together. It is time to watch my son marvel at the miracle of life, and to remember how we felt the day he was born. It is a time to remember that all things happen in their proper time and season, in accordance with a loving plan.
Wednesday, May 09, 2007
The Karate Kid (and Mom)
I've survived this far and while doing so, I have managed to sing three Messiah concerts, resurrect my clogging shoes and clarinet, and get a book published. So why not get a black belt in karate?
When I was in college I took a karate class, and I loved it so much, I joined the instructor's dojo for a few months. I made it all the way to an orange belt (it's the third level from the beginning, so it's not very far) and then I got distracted with trying to graduate from school and plan my wedding. It's been almost twenty years, but I remember it fondly. And it's a great workout for mind, body, and spirit.
I also thought karate would be good for my son, who is very athletic and coordinated. It's a nice all-season activity to complement his other sports, and it also teaches confidence and discipline.
There is a dojo close to home that teaches Kempo karate, so I signed us both up for a few months' worth of lessons. I studied American Kenpo; this is Shaolin Kempo, so there are some similarities and some differences. Because it is a different style I start over as a white belt, but hopefully it'll be like riding a bike.
We had our first lesson today, reviewing some stances, punches, kicks, and blocks. My son did very well, and I felt like I was back on the bike (just older and fatter and thinking of everything as a cool neuro test). Sensei Craig urged us to memorize the five animal forms of Shaolin Kempo, and their characteristics, as they are good to emulate:
THE TIGER: It represents courage, tenacity, and power.
THE DRAGON: It represents flexibility and inner strength.
THE LEOPARD: It represents timing, speed, coordination, and footwork. It is also very strong for its size.
THE CRANE: It represents balance, grace, agility and LONGEVITY (!), as well as concentration and patience.
THE SNAKE: It represents inner strength and endurance.
Of course, I would add the beagle (tenacity and playfulness) and the gorilla (for its grin). And if I can find some animal known for its ability to rejuvenate brain cells and destroy its own cancer cells, I'll be sure to add that to the mix!
When I was in college I took a karate class, and I loved it so much, I joined the instructor's dojo for a few months. I made it all the way to an orange belt (it's the third level from the beginning, so it's not very far) and then I got distracted with trying to graduate from school and plan my wedding. It's been almost twenty years, but I remember it fondly. And it's a great workout for mind, body, and spirit.
I also thought karate would be good for my son, who is very athletic and coordinated. It's a nice all-season activity to complement his other sports, and it also teaches confidence and discipline.
There is a dojo close to home that teaches Kempo karate, so I signed us both up for a few months' worth of lessons. I studied American Kenpo; this is Shaolin Kempo, so there are some similarities and some differences. Because it is a different style I start over as a white belt, but hopefully it'll be like riding a bike.
We had our first lesson today, reviewing some stances, punches, kicks, and blocks. My son did very well, and I felt like I was back on the bike (just older and fatter and thinking of everything as a cool neuro test). Sensei Craig urged us to memorize the five animal forms of Shaolin Kempo, and their characteristics, as they are good to emulate:
THE TIGER: It represents courage, tenacity, and power.
THE DRAGON: It represents flexibility and inner strength.
THE LEOPARD: It represents timing, speed, coordination, and footwork. It is also very strong for its size.
THE CRANE: It represents balance, grace, agility and LONGEVITY (!), as well as concentration and patience.
THE SNAKE: It represents inner strength and endurance.
Of course, I would add the beagle (tenacity and playfulness) and the gorilla (for its grin). And if I can find some animal known for its ability to rejuvenate brain cells and destroy its own cancer cells, I'll be sure to add that to the mix!
Tuesday, May 08, 2007
Safely Dead
One of our pet hermit crabs died. It was one of three crabs that our son received on Christmas day. Its shell was painted like a ladybug. Not long ago, it insisted on digging and burying itself under the sand in the little home that it shared with two other hermit crabs (painted like Spiderman and Batman). We heard this "crunch, crunch" sound and watched the crab tunnel his way into solitude. Eventually it emerged from its shell and exoskeleton and roamed around "naked". A few days later it was dead. My husband thought it looked partially eaten by the other crabs. (Ew.)
I broke the news to my son after school today. He took it a lot better than a few years ago, when his very first pet, "Shark" the goldfish, died. (He grieved the goldfish for a long time.) This time he asked why the crab died, and then he basically shrugged and said it was too bad, but at least the crab was in heaven now.
Little ladybug crab is safely dead. No more worries.
I had a nightmare during my few winks of sleep last night. My son was doing some work on a ledge overlooking the entryway on the second story of our house. He miscalculated where he was and ended up falling and landing with a sickening thud on the first floor hardwoods. He survived, thank goodness, but my last memory before I woke up sobbing was our scramble to call 911 and carefully check his limp body to determine the extent of his injuries. It felt awful, and that feeling stayed with me most of the day today. When he was a baby I had a worse nightmare, where we were at the mall and he climbed over a rail and fell to his death while I screamed in horror. I still remember that nightmare every time we walk into the mall, as I clutch his hand tightly.
Meanwhile, my daughter is already going through her adventurous stage before the age of two. She literally licks her fingers and runs toward electrical sockets (luckily we keep them covered), and she likes to see how many stairs she can jump down. She doesn't want to get hurt, but she does enjoy the excitement. She gets held a lot in order to keep her safe, and she probably likes that, too.
Losing a child is the only thing that seems worse than brain cancer. I think it would make brain cancer seem like a welcome escape from the awful grief. I am grateful that my children are alive and well and willing to let me clutch their hands and hold them tightly. But I know people who have lost a little one, and my husband and I lost a really little one (long before it would have been born). I think that the only possible solace that can come in such an awful situation is the reassurance that little children are innocent, and that through the Atonement of Jesus Christ those who die before the age of accountability are "safely dead". They are spared the harm that can come in mortality, although they miss much of the valuable experience of this life (which is why we still clutch their hands and instinctively protect them). Of such is the kingdom of heaven.
I read a quote today from Elder M. Russell Ballard, who said that "Life isn’t over for a Latter-day Saint until he or she is safely dead, with their testimony still burning brightly."
I'm not a crab, and I'm not a little child. Like the crab, and like the child, I instinctively want to live--even if I'm feeling adventurous. "Dead" may not be so tricky for me (darnit) but "safely dead" with my testimony burning brightly requires a little more effort on my part, since I'm not an innocent creature. It takes a little effort to obtain and maintain the faith that sustains me. Effort to do all that I have promised to do when I made sacred covenants at baptism and in the temple. Fortunately I have survived long enough to have been given plenty of experiences that have strengthened my faith and my testimony.
(Still...if I can make the case to buy more time to work on that "safely" part...)
I broke the news to my son after school today. He took it a lot better than a few years ago, when his very first pet, "Shark" the goldfish, died. (He grieved the goldfish for a long time.) This time he asked why the crab died, and then he basically shrugged and said it was too bad, but at least the crab was in heaven now.
Little ladybug crab is safely dead. No more worries.
I had a nightmare during my few winks of sleep last night. My son was doing some work on a ledge overlooking the entryway on the second story of our house. He miscalculated where he was and ended up falling and landing with a sickening thud on the first floor hardwoods. He survived, thank goodness, but my last memory before I woke up sobbing was our scramble to call 911 and carefully check his limp body to determine the extent of his injuries. It felt awful, and that feeling stayed with me most of the day today. When he was a baby I had a worse nightmare, where we were at the mall and he climbed over a rail and fell to his death while I screamed in horror. I still remember that nightmare every time we walk into the mall, as I clutch his hand tightly.
Meanwhile, my daughter is already going through her adventurous stage before the age of two. She literally licks her fingers and runs toward electrical sockets (luckily we keep them covered), and she likes to see how many stairs she can jump down. She doesn't want to get hurt, but she does enjoy the excitement. She gets held a lot in order to keep her safe, and she probably likes that, too.
Losing a child is the only thing that seems worse than brain cancer. I think it would make brain cancer seem like a welcome escape from the awful grief. I am grateful that my children are alive and well and willing to let me clutch their hands and hold them tightly. But I know people who have lost a little one, and my husband and I lost a really little one (long before it would have been born). I think that the only possible solace that can come in such an awful situation is the reassurance that little children are innocent, and that through the Atonement of Jesus Christ those who die before the age of accountability are "safely dead". They are spared the harm that can come in mortality, although they miss much of the valuable experience of this life (which is why we still clutch their hands and instinctively protect them). Of such is the kingdom of heaven.
I read a quote today from Elder M. Russell Ballard, who said that "Life isn’t over for a Latter-day Saint until he or she is safely dead, with their testimony still burning brightly."
I'm not a crab, and I'm not a little child. Like the crab, and like the child, I instinctively want to live--even if I'm feeling adventurous. "Dead" may not be so tricky for me (darnit) but "safely dead" with my testimony burning brightly requires a little more effort on my part, since I'm not an innocent creature. It takes a little effort to obtain and maintain the faith that sustains me. Effort to do all that I have promised to do when I made sacred covenants at baptism and in the temple. Fortunately I have survived long enough to have been given plenty of experiences that have strengthened my faith and my testimony.
(Still...if I can make the case to buy more time to work on that "safely" part...)
Sunday, May 06, 2007
Book Signing Barbie
Years ago, when I became president of a small medical device manufacturing company my dad gave me a "Pinstripe Power" Barbie doll (dolls are a traditional gift from my dad). Pinstripe Power Barbie wears a dark pinstriped pant suit and comes with a newspaper, briefcase, and stuff. I keep it in my office next to my copy of Real Women Don't Pump Gas, and a framed picture of my son who, as a baby, modeled for a print advertisement for one of the company's products.
I was "Book Signing Barbie" in Utah for a couple of days this week, complete with a gray suit pinstriped in lavender to match my book, with an alternate skirt/lavender blouse ensemble. My primary accessory was a matching purple pen.
Earlier in the week I was "Livestrong Barbie", sailing through my neuro tests and getting a strong dose of chemotherapy. My outfit was comprised of my "extra credit" mules (because I really had to be good in order to walk straight lines on my toes and heels while wearing them) and an easily rolled-up shirt sleeve to accommodate the IV. Later I was "Gorilla Grin Barbie" at the school meeting, and really wished I had a good dental appliance as an accessory.
Book Signing Barbie was a fun role to play. I had the pleasure of meeting family, friends, and several people who only knew me online; I had a chance to give hugs and thanks to my favorite author and mentor, and I had the thrill of watching the BYU Bookstore hang a huge sign with my name on it right over my head as I sat with several other authors at a huge event during their women's conference.
I also had some gaggle therapy while I was there. Two of the gaggle arranged to chauffer me around to signing events, and we had a great evening at a sentimental favorite restaurant in Provo. We pulled in the other two by phone, and every single moment was a joyous opportunity to celebrate friendships that have lasted since our teenage years. Time and distance and circumstances have not faded these friendships at all. It takes a really great friend to drive from Pleasant Grove to Salt Lake City in the rain (picking up lunch along the way), in order to take me from one signing to the next, and to sit with me and help with logistics throughout a very long signing event, then take me to a third event before racing home in time for her son's soccer game. It takes a really great friend to fly in from California and rent a car in order to drive and assist me through four signing events on Saturday, and then race me back to the airport in time to catch my flight home. When we pulled up to the last store in an awful windstorm, she even offered to shield me from any flying objects. Even the gaggle sisters who couldn't be there because of family obligations were concerned about making sure I was covered. These friends are amazing.
Despite feeling the after-effects of this week's chemo infusion, I was able to navigate the signing events with a happy face and a constant feeling of awe that I was doing things that were not expected for a glioblastoma multiforme patient in the sixteenth month following diagnosis. But as my brother Jim said a long time ago, there is no clinical history of glioblastoma multiforme in someone with my DNA, my lifestyle, my medical history, and my purpose in life. Who knows what I will be capable of doing, and for how long? Who knows that about anyone, even if they are cancer-free?
While I was at the BYU Women's Conference on Friday I heard many inspiring things, but one in particular came from Ardeth Kapp (my favorite author). She suggested that instead of just wondering "why me?" in our lives, we should ponder "why me...why now...why here?" The reason being that we are all here...now...for an important purpose. It is exciting to ponder the experiences and circumstances that we have in our lives, so that we can figure out how best to magnify them and put them to good use. I am certain that my purpose isn't limited to having a Book Signing Barbie moment. That was just a fun opportunity to savor the many blessings that surround adversity, making it easier to bear. And it was a reminder that I have been given a life (and a good one at that), and it is my responsibility and opportunity to make something good of it.
Monday, April 30, 2007
What will tomorrow bring?
What will tomorrow bring?
Man, if I knew that, I could triple my billing rate for my clients! I would also feel a lot less suspense waiting for MRI results. (I'd just feel the suspense a day earlier).
The truth is, none of us knows for sure what tomorrow will bring. We just know what we have planned.
Assuming things go as planned, I have a neuro test followed by a long chemo infusion tomorrow. This is a good thing, because my labwork came back good enough to proceed with treatment. I still have bone marrow. (Never take your bone marrow for granted!)
And assuming things go as planned, the day after tomorrow I will be recovering from chemo, and then I will have a meeting at my son's school. Despite our efforts to protect him, my illness has been a source of stress for him, and he started having behavioral problems at school right after my surgery. They have been minor and understandable, but we have learned that going to an award-winning school can be both a blessing and a curse. I have been warned by parents and pediatricians to watch out -- these award-winning schools are the quickest to label kids. If I had an 11-year prognosis I would home school him, because he's so darn smart and he did great at "Camp Mama-atta-homa" last summer. (Before my property values plummet as a result of this blog, I should mention that the school really does provide a fantastic curriculum, and is a great one for those children who are not facing a family crisis, and who are otherwise able to avoid acting like a five-year-old while in kindergarten.) Thank goodness for my mastery of the gorilla grin, as I will be using it during the meeting. (I've posted about this before--when gorillas are about to attack, they bare their teeth and appear to be smiling.)
After the meeting I get to hug my family goodbye and board an airplane. I am traveling to Utah for my first book signing tour! My alma mater, Brigham Young University, is having a Women's Conference this week, and the BYU bookstore is having a big book signing event with lots of authors, and I was invited to participate. I have other signings scheduled during my trip. Here's my schedule, for those who are in the area:
Thursday May 3
10:00-12:00 Seagull Bookstore, 1720 S. Redwood Road, SLC.
12:30-2:30 Seagull Bookstore, 5720 S. Redwood Road, Taylorsville.
3:00-5:00 Seagull Bookstore, 1625 W. 9000 S., West Jordan.
Friday, May 4
10:30-12:00 BYU Bookstore during Women's Conference
4:00-6:00 Seagull Bookstore 677 N. State Street, Lindon.
Saturday, May 5
10:00-11:00 Seagull Bookstore, 2250 N. University Pkwy #C56, Provo
11:30-12:30 Seagull Bookstore, 331 E. University Parkway, Orem
1:00-2:00 Seagull Bookstore, 1326 S. University Ave., Provo
2:30-3:00 Seagull Bookstore, 111 S. State Street, Orem
I haven't traveled alone since my head got cracked open. My travels have all been with family. Luckily I will be seeing and staying with family and friends, but I will miss being with my husband and kiddos, even for just a few days. But if things go as planned we'll have a sweet reunion Saturday night. And naturally, that thought leads to the analogy of what another tomorrow might ultimately bring (hopefully not for a LONG time). This disease creates the possibility of leaving my family behind again for a while. I'll hopefully be in a place where I can associate with other family and friends, although I will miss being with Jared and Jacob and Emma. It will only be a temporary separation, however, and we'll have a sweet reunion again -- one that will last forever.
After all, as Tony Snow has mentioned while discussing his own cancer experience, "God doesn't promise us tomorrow, but he promises us eternity."
Enjoy today!
Man, if I knew that, I could triple my billing rate for my clients! I would also feel a lot less suspense waiting for MRI results. (I'd just feel the suspense a day earlier).
The truth is, none of us knows for sure what tomorrow will bring. We just know what we have planned.
Assuming things go as planned, I have a neuro test followed by a long chemo infusion tomorrow. This is a good thing, because my labwork came back good enough to proceed with treatment. I still have bone marrow. (Never take your bone marrow for granted!)
And assuming things go as planned, the day after tomorrow I will be recovering from chemo, and then I will have a meeting at my son's school. Despite our efforts to protect him, my illness has been a source of stress for him, and he started having behavioral problems at school right after my surgery. They have been minor and understandable, but we have learned that going to an award-winning school can be both a blessing and a curse. I have been warned by parents and pediatricians to watch out -- these award-winning schools are the quickest to label kids. If I had an 11-year prognosis I would home school him, because he's so darn smart and he did great at "Camp Mama-atta-homa" last summer. (Before my property values plummet as a result of this blog, I should mention that the school really does provide a fantastic curriculum, and is a great one for those children who are not facing a family crisis, and who are otherwise able to avoid acting like a five-year-old while in kindergarten.) Thank goodness for my mastery of the gorilla grin, as I will be using it during the meeting. (I've posted about this before--when gorillas are about to attack, they bare their teeth and appear to be smiling.)
After the meeting I get to hug my family goodbye and board an airplane. I am traveling to Utah for my first book signing tour! My alma mater, Brigham Young University, is having a Women's Conference this week, and the BYU bookstore is having a big book signing event with lots of authors, and I was invited to participate. I have other signings scheduled during my trip. Here's my schedule, for those who are in the area:
Thursday May 3
10:00-12:00 Seagull Bookstore, 1720 S. Redwood Road, SLC.
12:30-2:30 Seagull Bookstore, 5720 S. Redwood Road, Taylorsville.
3:00-5:00 Seagull Bookstore, 1625 W. 9000 S., West Jordan.
Friday, May 4
10:30-12:00 BYU Bookstore during Women's Conference
4:00-6:00 Seagull Bookstore 677 N. State Street, Lindon.
Saturday, May 5
10:00-11:00 Seagull Bookstore, 2250 N. University Pkwy #C56, Provo
11:30-12:30 Seagull Bookstore, 331 E. University Parkway, Orem
1:00-2:00 Seagull Bookstore, 1326 S. University Ave., Provo
2:30-3:00 Seagull Bookstore, 111 S. State Street, Orem
I haven't traveled alone since my head got cracked open. My travels have all been with family. Luckily I will be seeing and staying with family and friends, but I will miss being with my husband and kiddos, even for just a few days. But if things go as planned we'll have a sweet reunion Saturday night. And naturally, that thought leads to the analogy of what another tomorrow might ultimately bring (hopefully not for a LONG time). This disease creates the possibility of leaving my family behind again for a while. I'll hopefully be in a place where I can associate with other family and friends, although I will miss being with Jared and Jacob and Emma. It will only be a temporary separation, however, and we'll have a sweet reunion again -- one that will last forever.
After all, as Tony Snow has mentioned while discussing his own cancer experience, "God doesn't promise us tomorrow, but he promises us eternity."
Enjoy today!
Wednesday, April 25, 2007
Playground in (what's left of) My Mind
I've been working really hard today, and I guess it must have tickled whatever is left in my mind that conjures up old memories. I kept thinking of a song that I loved back in 1973 when I was about my son's age, called "Playground In My Mind", recorded by Clint Holmes. It's one of those that will stick in my head all day. So with my apologies to whoever wrote it, I had to create my own version:
"Playground In (What’s Left of) My Mind"
When this old world gets me down
And there's too much cancer to be found
I close my eyes and soon I find
I'm in a playground in (what’s left of) my mind
Where the children laugh and the children play
And we sing a song all day:
"My name is Krista, I had some chemo,
Radiation, and surgery, too.
But I’m still singing, dancing, and writing;
That's what I'm gonna do"
Oh the wonders that I find
In the playground in (what’s left of) my mind;
Although it's soaked in chemotherapy,
Close your eyes and follow me
Where the children laugh and the children play
And we sing a song all day:
"My guy is Jared,
And we’ll get married.
And we’ll adopt a baby or two.
We're gonna let them visit their grandmas
That's what we're gonna do."
"Jacob and Emma,
I’ll be your Mama,
Daddy and I will always love you.
We're gonna let you visit your grandmas
That's what we're gonna do."
See the little children
Living in a world I don’t wanna leave behind
Happy little children
In the playround in (what’s left of) my mind.
Speaking from experience
There's nothing like finding a use for adversity, to give it some meaning. Just like the oyster, who endures irritating sand and uses it to make something valuable (a pearl), I have found myself with a couple of pearls of wisdom, thanks to the experiences that I have been blessed to be able to endure so far.
I was asked to speak at a recent stake women's conference at my church last weekend, on the topic of "These Things Shall Give Thee Experience". Naturally, I jumped at the opportunity to fill that assignment, mostly because I'm so glad that I still CAN do it, but also because it is a chance to use my "experience" to hopefully share something of value. Afterward I got a phone call from someone who has asked me to speak at a young women camp on the topic of finding joy in any of life's circumstances. I think it's a great idea, because sometimes when we're young we think life is supposed to unfold like a perfect fairytale, and so it may be useful to let them know that sometimes things don't work out the way we plan--but we can still be optomistic and make great things happen in our lives.
My "experience" talk is based on LDS scripture found in Doctrine & Covenants 122:7-9, which is the Lord's reply to Joseph Smith, who was suffering extreme persecution:
"And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good. The Son of Man hath descended below them all. Art thou greater than he? Therefore, hold on thy way, and the priesthood shall remain with thee; for their bounds are set, they cannot pass. Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever."
When I was young and inexperienced I did not understand how horrible tragedies could give experience and be for our good. But now I realize that the Lord is so good, he can make good things out of anything that happens in our lives, if we let him. He did personally descend below all that we would ever have to face, and so he knows exactly how to help us and save us. And it's good to realize that our days are known and won't be numbered any less, and that no matter what happens in this world, God will always be with us.
I'll leave a couple of favorite thoughts for the day -- some of my favorite quotes about this subject of life's experiences:
“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God…and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire..." --Orson F. Whitney, in Faith Precedes the Miracle
“This life experience is designed for our growth and progress. Our trials will not be more than we can handle, but they cannot be less if we are to fill the measure of our creation.” --Ardeth Greene Kapp, in Rejoice! His Promises Are Sure
“If we looked at mortality as the whole of existence, then pain, sorrow, failure, and short life would be calamity. But if we look upon life as an eternal thing, stretching far into the premortal past and on into the eternal post-death future, then all happenings may be put in proper perspective...Is there not wisdom in his giving us trials that we might rise above them, responsibilities that we might achieve, work to harden our muscles, sorrows to try our souls? Are we not exposed to temptations to test our strength, sickness that we might learn patience, death that we might be immortalized and glorified?...If all the sick for whom we prayed were healed, if all the righteous were protected and the wicked destroyed, the whole program of the Father would be annulled and the basic principle of the gospel, free agency, would be ended. No man would have to live by faith...Being human, we would expel from our lives physical pain and mental anguish and assure ourselves of continual ease and comfort, but if we were to close the doors upon sorrow and distress, we might be excluding our greatest friends and benefactors. Suffering can make saints of people as they learn patience, long-suffering, and self-mastery." --Spencer W. Kimball
I was asked to speak at a recent stake women's conference at my church last weekend, on the topic of "These Things Shall Give Thee Experience". Naturally, I jumped at the opportunity to fill that assignment, mostly because I'm so glad that I still CAN do it, but also because it is a chance to use my "experience" to hopefully share something of value. Afterward I got a phone call from someone who has asked me to speak at a young women camp on the topic of finding joy in any of life's circumstances. I think it's a great idea, because sometimes when we're young we think life is supposed to unfold like a perfect fairytale, and so it may be useful to let them know that sometimes things don't work out the way we plan--but we can still be optomistic and make great things happen in our lives.
My "experience" talk is based on LDS scripture found in Doctrine & Covenants 122:7-9, which is the Lord's reply to Joseph Smith, who was suffering extreme persecution:
"And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good. The Son of Man hath descended below them all. Art thou greater than he? Therefore, hold on thy way, and the priesthood shall remain with thee; for their bounds are set, they cannot pass. Thy days are known, and thy years shall not be numbered less; therefore, fear not what man can do, for God shall be with you forever and ever."
When I was young and inexperienced I did not understand how horrible tragedies could give experience and be for our good. But now I realize that the Lord is so good, he can make good things out of anything that happens in our lives, if we let him. He did personally descend below all that we would ever have to face, and so he knows exactly how to help us and save us. And it's good to realize that our days are known and won't be numbered any less, and that no matter what happens in this world, God will always be with us.
I'll leave a couple of favorite thoughts for the day -- some of my favorite quotes about this subject of life's experiences:
“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. All that we suffer and all that we endure builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God…and it is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire..." --Orson F. Whitney, in Faith Precedes the Miracle
“This life experience is designed for our growth and progress. Our trials will not be more than we can handle, but they cannot be less if we are to fill the measure of our creation.” --Ardeth Greene Kapp, in Rejoice! His Promises Are Sure
“If we looked at mortality as the whole of existence, then pain, sorrow, failure, and short life would be calamity. But if we look upon life as an eternal thing, stretching far into the premortal past and on into the eternal post-death future, then all happenings may be put in proper perspective...Is there not wisdom in his giving us trials that we might rise above them, responsibilities that we might achieve, work to harden our muscles, sorrows to try our souls? Are we not exposed to temptations to test our strength, sickness that we might learn patience, death that we might be immortalized and glorified?...If all the sick for whom we prayed were healed, if all the righteous were protected and the wicked destroyed, the whole program of the Father would be annulled and the basic principle of the gospel, free agency, would be ended. No man would have to live by faith...Being human, we would expel from our lives physical pain and mental anguish and assure ourselves of continual ease and comfort, but if we were to close the doors upon sorrow and distress, we might be excluding our greatest friends and benefactors. Suffering can make saints of people as they learn patience, long-suffering, and self-mastery." --Spencer W. Kimball
Thursday, April 19, 2007
Things aren't always what they seem
I think twelve days is my record for CDWB (consecutive days without blogging), and I really don't want to beat that.
Things aren't always what they seem. I'm still around. I'm still having fun. Easter was once again a wonderful reminder that no matter where this cancer experience takes me, the Savior's work was perfectly finished in order to ensure that I can overcome anything that happens to me. Shortly after Easter weekend (which included singing Messiah and marveling that I was still able to enjoy that wonderful experience) I discovered that I had depleted all my energy, and I spent a while feeling lousy. Not too lousy, but lousy enough to lay low for a while.
With all that energy drained, and with the earlier dip in my CBC's (which rebounded just enough for another round of chemo) I was convinced that my next panel of labwork would show that I was anemic. But things aren't always what they seem, and my results came out good enough for more chemotherapy today. Maybe all that fatigue had something to do with my body's refusal to sleep as much as it should.
Speaking of things not being what they seem, I have to share a favorite story that I once received in what I like to call "faith-promoting emails":
Things aren't always what they seem. I'm still around. I'm still having fun. Easter was once again a wonderful reminder that no matter where this cancer experience takes me, the Savior's work was perfectly finished in order to ensure that I can overcome anything that happens to me. Shortly after Easter weekend (which included singing Messiah and marveling that I was still able to enjoy that wonderful experience) I discovered that I had depleted all my energy, and I spent a while feeling lousy. Not too lousy, but lousy enough to lay low for a while.
With all that energy drained, and with the earlier dip in my CBC's (which rebounded just enough for another round of chemo) I was convinced that my next panel of labwork would show that I was anemic. But things aren't always what they seem, and my results came out good enough for more chemotherapy today. Maybe all that fatigue had something to do with my body's refusal to sleep as much as it should.
Speaking of things not being what they seem, I have to share a favorite story that I once received in what I like to call "faith-promoting emails":
Things Aren't Always What They Seem
--Author Unknown
Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the guestroom of the mansion. Instead, they were given a space in the cold basement.
As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem". The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had, the couple let the angels sleep in their bed where they could have a good night's rest. When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field.
The younger angel was infuriated and asked the older angel "How could you have let this happen!? The first man had everything, yet you helped him. The second family had little but was willing to share everything, and you let their cow die." The older angel replied, "Things aren't always what they seem. When we stayed in the basement of the mansion, I noticed there was gold in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it. Then last night as we slept in the farmers bed, the angel of death came for his wife. I gave her the cow instead. Things aren't always what they seem."
--Author Unknown
Two traveling angels stopped to spend the night in the home of a wealthy family. The family was rude and refused to let the angels stay in the guestroom of the mansion. Instead, they were given a space in the cold basement.
As they made their bed on the hard floor, the older angel saw a hole in the wall and repaired it. When the younger angel asked why, the older angel replied, "Things aren't always what they seem". The next night the pair came to rest at the house of a very poor, but very hospitable farmer and his wife. After sharing what little food they had, the couple let the angels sleep in their bed where they could have a good night's rest. When the sun came up the next morning the angels found the farmer and his wife in tears. Their only cow, whose milk had been their sole income, lay dead in the field.
The younger angel was infuriated and asked the older angel "How could you have let this happen!? The first man had everything, yet you helped him. The second family had little but was willing to share everything, and you let their cow die." The older angel replied, "Things aren't always what they seem. When we stayed in the basement of the mansion, I noticed there was gold in that hole in the wall. Since the owner was so obsessed with greed and unwilling to share his good fortune, I sealed the wall so he wouldn't find it. Then last night as we slept in the farmers bed, the angel of death came for his wife. I gave her the cow instead. Things aren't always what they seem."
Darn--too bad we don't have any cows, in case some traveling angels come by. But it's nice to know that our limited view of things can be so flawed. That's why we need to trust in the Lord instead of the arm of flesh.
Saturday, April 07, 2007
Handel-ing Messiah
Today was the final rehearsal before our Messiah performance tomorrow night. (That's tomorrow night, Easter Sunday, at 7 pm, 2801 El Dorado Parkway, McKinney, Texas! Be there!)
For the third time since having my right brain assaulted by knives, radiation, chemicals, and tumor cells, I will be singing with the choir. I will be singing a duet with my husband. And I will be singing one of my favorite solos. As the orchestra began with the overture, tears of gratitude filled my eyes. Messiah is back in my life. And more importantly, the Messiah of whom we sing is in my life, blessing me to be able to enjoy this moment.
Contrary to conventional wisdom, I'm not dead. I'm not tone deaf. I haven't lost my memory. I sang most of it off-book today, because I was a little tired from Thursday's chemotherapy and I felt too lazy to stand and hold my music for three hours. All the assailants that would have taken my life, my musical ability, and my memory were no match for the power of prayer and the tender mercies of the Lord and a feisty spirit.
Hallelujah!
For the third time since having my right brain assaulted by knives, radiation, chemicals, and tumor cells, I will be singing with the choir. I will be singing a duet with my husband. And I will be singing one of my favorite solos. As the orchestra began with the overture, tears of gratitude filled my eyes. Messiah is back in my life. And more importantly, the Messiah of whom we sing is in my life, blessing me to be able to enjoy this moment.
Contrary to conventional wisdom, I'm not dead. I'm not tone deaf. I haven't lost my memory. I sang most of it off-book today, because I was a little tired from Thursday's chemotherapy and I felt too lazy to stand and hold my music for three hours. All the assailants that would have taken my life, my musical ability, and my memory were no match for the power of prayer and the tender mercies of the Lord and a feisty spirit.
Hallelujah!
Wednesday, April 04, 2007
What a difference a day makes
Yesterday morning I woke up with a nasty dull ache in my stomach and a lingering, unsettling feeling--despite the "good" MRI--as though it somehow wasn't being processed as good news.
Fortunately, however, the day quickly improved. I was showered with encouraging phone calls from family members. And then I got an assignment to speak at an upcoming women's meeting at our church, which immediately gave me something exciting to focus on. My son came home from a good day at school--his third one in a row--which qualified him for a fun lesson in making marshmallow crispy treats with me. My sister-in-law, who is in the hospital gestating our future niece, loves those treats, and Jacob was so cute and happy, fixing her a plate of them, along with a card that he lovingly scrawled a message on.
A few people let me know that they received the latest Deseret Book catalog, which features my book, and our book group also met last night at my house to talk about my book and get their copies signed.
Somewhere in the midst of all these fun things, I finally got the phone call I had been hoping for: the new labwork that they did on Monday came back much better than last Thursday's results. I can have my regularly planned treatment this week. The quick recovery of my bone marrow is nothing short of miraculous, so big thanks again for the many prayers that helped bring that about. What a crazy life - to be in a position where "getting" to have chemotherapy is something to be excited about.
Needless to say, I awakened this morning with no aching pit in my stomach; just the usual flood of "to-do" tasks for the day and a feeling of gratitude that I have another day of life and things to do with it.
Fortunately, however, the day quickly improved. I was showered with encouraging phone calls from family members. And then I got an assignment to speak at an upcoming women's meeting at our church, which immediately gave me something exciting to focus on. My son came home from a good day at school--his third one in a row--which qualified him for a fun lesson in making marshmallow crispy treats with me. My sister-in-law, who is in the hospital gestating our future niece, loves those treats, and Jacob was so cute and happy, fixing her a plate of them, along with a card that he lovingly scrawled a message on.
A few people let me know that they received the latest Deseret Book catalog, which features my book, and our book group also met last night at my house to talk about my book and get their copies signed.
Somewhere in the midst of all these fun things, I finally got the phone call I had been hoping for: the new labwork that they did on Monday came back much better than last Thursday's results. I can have my regularly planned treatment this week. The quick recovery of my bone marrow is nothing short of miraculous, so big thanks again for the many prayers that helped bring that about. What a crazy life - to be in a position where "getting" to have chemotherapy is something to be excited about.
Needless to say, I awakened this morning with no aching pit in my stomach; just the usual flood of "to-do" tasks for the day and a feeling of gratitude that I have another day of life and things to do with it.
Monday, April 02, 2007
Thank goodness it's April 2nd...
I'm so glad it wasn't April Fool's Day today, because I didn't want to be waiting for a punchline if I heard anything I didn't like. We did joke, though, about the blood pressure monitor, which kept acting up on me. Maybe the machine thought it was still April 1st.
The good news was that today's MRI results were "good". The scan looks almost identical to previous scans, so anything still remaining may just be scar tissue or something like that. Of course, next time (in 8 weeks) I get to do a spectroscopy scan to know for certain. I was assured that the spectroscopy was not ordered because of anything worrisome, but as a routine practice every six months. Neuro tests were minimal, which was a good sign. (Didn't seem necessary to evaluate clinical effects if there was no evidence of disease progression.)
The bad news is that although my treatment seems to be working well, it is becoming less tolerable, at least as far as my bone marrow is concerned. I'll know the results of my labwork tomorrow, and that will dictate what we do next for treatment. Ideally they wanted me to be on my current treatment for a year and then put me on a maintenance program, but I learned that many patients can only handle six months of this regimen. I might get to squeeze out a couple more months if my blood cell counts can bounce back up. Meanwhile, I may have to postpone or pare back some of my treatment. We're not sure how this will play out, and in our discussion I also learned some things that I'd rather not think about. So I left with an uneasy feeling for the rest of the day, although I was somewhat relieved that at least for now things were better than they could have been. But I think I'm just haunted by previous bad news, and I'm creeped out by more exposure to the gruesome realities of what seems inevitable, although hopefully not until sometime in the far distant future.
What helped a lot was a small voice that kept whispering to me, "Trust not in the arm of flesh." I have a great oncologist, but despite her expertise in this matter she is not all-knowing. She has no cure for me (yet) but she has some good tricks up her sleeve and she may only be one of many tools that the Lord is providing. None of us knows all that will be accomplished in my life, and how long I have in which to get it done. None of us knows what is around the corner -- good or bad -- and while sometimes we are hit by tragedy we can also be surprised by marvelous miracles. (&& --Fingers crossed for the latter.)
Speaking of miracles, we had our family home evening lesson this evening on the Easter story, and the ultimate miracle of the Resurrection. As we spent our time immersed in this topic with our son, it was a sweet reminder of the hope that remains constant, regardless of whatever happens with this nasty cancer. That's what I can rely on, even more so than what good clinical experts might conclude.
And meanwhile, even though there's a residual icky feeling that wants to linger, I'm happy to know that at least for today I'm still in the game.
The good news was that today's MRI results were "good". The scan looks almost identical to previous scans, so anything still remaining may just be scar tissue or something like that. Of course, next time (in 8 weeks) I get to do a spectroscopy scan to know for certain. I was assured that the spectroscopy was not ordered because of anything worrisome, but as a routine practice every six months. Neuro tests were minimal, which was a good sign. (Didn't seem necessary to evaluate clinical effects if there was no evidence of disease progression.)
The bad news is that although my treatment seems to be working well, it is becoming less tolerable, at least as far as my bone marrow is concerned. I'll know the results of my labwork tomorrow, and that will dictate what we do next for treatment. Ideally they wanted me to be on my current treatment for a year and then put me on a maintenance program, but I learned that many patients can only handle six months of this regimen. I might get to squeeze out a couple more months if my blood cell counts can bounce back up. Meanwhile, I may have to postpone or pare back some of my treatment. We're not sure how this will play out, and in our discussion I also learned some things that I'd rather not think about. So I left with an uneasy feeling for the rest of the day, although I was somewhat relieved that at least for now things were better than they could have been. But I think I'm just haunted by previous bad news, and I'm creeped out by more exposure to the gruesome realities of what seems inevitable, although hopefully not until sometime in the far distant future.
What helped a lot was a small voice that kept whispering to me, "Trust not in the arm of flesh." I have a great oncologist, but despite her expertise in this matter she is not all-knowing. She has no cure for me (yet) but she has some good tricks up her sleeve and she may only be one of many tools that the Lord is providing. None of us knows all that will be accomplished in my life, and how long I have in which to get it done. None of us knows what is around the corner -- good or bad -- and while sometimes we are hit by tragedy we can also be surprised by marvelous miracles. (&& --Fingers crossed for the latter.)
Speaking of miracles, we had our family home evening lesson this evening on the Easter story, and the ultimate miracle of the Resurrection. As we spent our time immersed in this topic with our son, it was a sweet reminder of the hope that remains constant, regardless of whatever happens with this nasty cancer. That's what I can rely on, even more so than what good clinical experts might conclude.
And meanwhile, even though there's a residual icky feeling that wants to linger, I'm happy to know that at least for today I'm still in the game.
Subscribe to:
Posts (Atom)