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.
Friday, August 31, 2007
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!)
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