I keep thinking about that Lance Armstrong quote: "The ironic thing was, the worse I felt, the better I got."
Boy, if that's the true measure of improvement, then I must be sailing toward remission, because I feel pretty darn lousy!!!!!!
I am transitioning to a new seizure medication, which is nice, because the fevers and chills are finally going away. My personal record was 105.8, and I'm glad to know that it can remain on the record books for a while without challenge. A week of high fevers has taken its toll on me, though. I feel pretty sapped and sore and miserable. In addition, the new medication has its own side effects - especially dizziness and fatigue - so basically I would easily fail a sobriety test. Good thing I neither drive nor drink!
The silliest thing is this "dysesthesia" on my back. It basically feels like my back is sunburned. I feel it when I sit or lie down and my clothes come into contact with my back. I feel it when I walk, and the impact of each step is painful. I feel it when my husband lovingly hugs me or caresses my back. Love the thought - but OWWWW!
Right now I spend a lot of time in bed, trying to recover. But I feel like an invalid. I am so limited as to what I can physically do right now. It's frustrating. I prefer to feel vibrant and alive, like I did when I could clog dance and run on my treadmill. Instead, I feel like someone who is dying, and that's not the feeling I want right now. I want to be feisty and full of energy to fight this battle. I want to be physically fit, because that may be a lifesaver. I realized that if I am sedentary and packing on weight again, that's a sure path to developing diabetes. If I develop diabetes, that's a sure path to being a non-ideal surgical candidate. And that means I may be more likely to have an "inoperable" tumor, if one recurs. And an inoperable tumor may simply mean a matter of time before my time is up. Not a good way to go. I really want to get up and run. But I can't. I can barely walk across the room at a normal pace. I usually shuffle slowly like an old man in a nursing home. It's crazy. I keep thinking of the Lance Armstrong quote, and I tell myself I must be getting better. And in time, I will also feel better. At least, I hope!
Friday, March 31, 2006
Sunday, March 26, 2006
I lack nothing
(By the way, as a postscript - no pun intended - to yesterday's post, KPGR radio is on FM 88.1 in Utah Valley - that would be an awfully low temperature! I was miserable with fever and chills this morning, it got better this afternoon, and it's cranking back up tonight. Really looking forward to a remedy soon.)
On Friday evening, as we sat in our temple, I experienced the contrasting conditions of discomfort and spiritual enlightenment. I was miserable with fever and chills, and I was anxious to know the MRI results. At the same time, however, I was in a place that helped calibrate my focus back to "the most important thing", and everything else just becomes details. It is always a wonderful place to be.
At the conclusion of our ordinance work, as we were sitting and reflecting in the Celestial Room (a beautiful room that represents the presence of God), the thought occurred to me that "I lack nothing." It's true. I lack nothing.
I have everything that I need to reach my highest potential. I have the opportunity to live on this earth and receive a physical body (even though it got cancer at age 38, it's still a blessing to have). I have a Savior who bore my sins and my sorrows and pains, and who atoned for me and was resurrected for me. His gospel has been restored to the earth, giving me access to the saving ordinances and blessings that come through restored priesthood authority. I was born of goodly parents who taught me the gospel, so that it has been a part of my life from its foundation. I have a very loving and wonderful family - including the family I was born into, the family I married into, and the family my husband and I have built together. I have a sure knowledge and testimony of my Heavenly Father's love for me, and His watchful care over me. I know that, no matter how violent this rollercoaster ride becomes at times, I can always trust in Him. I have been blessed in the past with experiences of adversity, which taught me so much and shaped my trust in Him. He will always do what is best for me, and what will ultimately bring me "through thorny ways" to a "joyful end".
My daily needs are always met through a bounty of blessings. My husband's employer (really, guys - buy LOTS of Mary Kay stuff!!!) and my wonderful clients give us a secure living. I have access to very capable and competent medical care, using advanced technology. We have an army of angels from my church family, who make sure I have any help that I need, from driving to childcare to meals to laundry and housekeeping, to ANYTHING. The Lord uses His children to bless His children.
In addition to what I "need", I have also been blessed with special delights: talents and abilities and opportunities to use them, beautiful and happy relationships (including the great love of my life and the two great joys of my life - all of whom live in my home), an appreciation for good music and an opportunity to hear it often, and a long list of "tender mercies" that have been given to me.
I realized that when it comes to the things that I need, I lack nothing. Nothing. I can't think of a single thing that I could possibly need, that isn't here or ready to show up as soon as it is needed.
Is there something that I want? Yes. I want complete remission of this cancer. For-evvvvv-er. I want to live long enough to raise our children. Do I lack these things? These are things that remain to be seen. We always get what we need. We sometimes can also get what we want, if it is not contrary to the will of the Lord. I hope I get what I want, and I know that by putting my righteous desires before the Lord in prayer, I reveal my heart to Him.
On Friday evening, as we sat in our temple, I experienced the contrasting conditions of discomfort and spiritual enlightenment. I was miserable with fever and chills, and I was anxious to know the MRI results. At the same time, however, I was in a place that helped calibrate my focus back to "the most important thing", and everything else just becomes details. It is always a wonderful place to be.
At the conclusion of our ordinance work, as we were sitting and reflecting in the Celestial Room (a beautiful room that represents the presence of God), the thought occurred to me that "I lack nothing." It's true. I lack nothing.
I have everything that I need to reach my highest potential. I have the opportunity to live on this earth and receive a physical body (even though it got cancer at age 38, it's still a blessing to have). I have a Savior who bore my sins and my sorrows and pains, and who atoned for me and was resurrected for me. His gospel has been restored to the earth, giving me access to the saving ordinances and blessings that come through restored priesthood authority. I was born of goodly parents who taught me the gospel, so that it has been a part of my life from its foundation. I have a very loving and wonderful family - including the family I was born into, the family I married into, and the family my husband and I have built together. I have a sure knowledge and testimony of my Heavenly Father's love for me, and His watchful care over me. I know that, no matter how violent this rollercoaster ride becomes at times, I can always trust in Him. I have been blessed in the past with experiences of adversity, which taught me so much and shaped my trust in Him. He will always do what is best for me, and what will ultimately bring me "through thorny ways" to a "joyful end".
My daily needs are always met through a bounty of blessings. My husband's employer (really, guys - buy LOTS of Mary Kay stuff!!!) and my wonderful clients give us a secure living. I have access to very capable and competent medical care, using advanced technology. We have an army of angels from my church family, who make sure I have any help that I need, from driving to childcare to meals to laundry and housekeeping, to ANYTHING. The Lord uses His children to bless His children.
In addition to what I "need", I have also been blessed with special delights: talents and abilities and opportunities to use them, beautiful and happy relationships (including the great love of my life and the two great joys of my life - all of whom live in my home), an appreciation for good music and an opportunity to hear it often, and a long list of "tender mercies" that have been given to me.
I realized that when it comes to the things that I need, I lack nothing. Nothing. I can't think of a single thing that I could possibly need, that isn't here or ready to show up as soon as it is needed.
Is there something that I want? Yes. I want complete remission of this cancer. For-evvvvv-er. I want to live long enough to raise our children. Do I lack these things? These are things that remain to be seen. We always get what we need. We sometimes can also get what we want, if it is not contrary to the will of the Lord. I hope I get what I want, and I know that by putting my righteous desires before the Lord in prayer, I reveal my heart to Him.
Saturday, March 25, 2006
The power of negative thinking?
MRI result = negative! "Completely negative - everything looks exactly as it should." Just got the results today.
While I am SO relieved at the news, and while I marvel at the sophisticated technology that is available, I have grumpily thought to myself that the process of diagnostic imaging is often barbaric. With the exception of some ob-gyn ultrasound monitoring, the process is performed by a technician who is looking at the image while it is being taken. This technician is highly trained, and I'm guessing that part of that training involves "Advanced Poker Face".
Getting test results is not like what I remembered from the days of getting college exam test results at the BYU Testing Center. When I was a BYU student, we often took computerized exams (fill in the little circles). When I was finished, I would exit the exam room through a special exit room where I would hand my completed test to the testing center worker, who would run it through a scanner and hand me a printout with my test score within minutes (depending on how many people were in line before me). Maybe that's why I'm into immediate gratification when it comes to obtaining information.
Instead, I am at the mercy of the facility's immediate access to a radiologist, who reads and interprets the image. It's a function of organizational structure and communication channels between technician and radiologist, and not anything against radiologists - I have a friend who is a radiologist! And then the radiologist communicates the results to my doctor, who may want a written report and/or a copy of the actual images. My doctor does whatever they need to do with the information, and then if I cry "uncle" loud enough, I get the result.
I understand the necessity of the process, but I really wish there were a more streamlined way to manage it. I think the thing I dreaded most before I knew the result was if it were going to be one that required more testing.
Meanwhile, my fevers continue to move up and down the FM dial. 104.5, 103.8, 102.2, 101.9, 97.8, 99.9, 100.3, 104.1, etc., etc. It's my inner disc jockey. I was a disc jockey during my senior year in high school. Our high school had a radio station that played top 40 hits, and seniors could take a class in "radio", which included a part-time assignment after school as a disc jockey for the station. KPGR - I remember the call letters, but I can't remember the spot on the dial. I'm hoping my current "station" starts to consistently stay on the "negative" side of 100 degrees. The fever doesn't bother me as much as the chills. Those are a constant discomfort, no matter how many layers I pile on to keep me warm. We are going to change my medication on Monday, when my oncologist and neurologist can come up with an alternative. The expectation is that it will provide immediate relief, so I'm anxious to prove that theory correct.
While I am SO relieved at the news, and while I marvel at the sophisticated technology that is available, I have grumpily thought to myself that the process of diagnostic imaging is often barbaric. With the exception of some ob-gyn ultrasound monitoring, the process is performed by a technician who is looking at the image while it is being taken. This technician is highly trained, and I'm guessing that part of that training involves "Advanced Poker Face".
Getting test results is not like what I remembered from the days of getting college exam test results at the BYU Testing Center. When I was a BYU student, we often took computerized exams (fill in the little circles). When I was finished, I would exit the exam room through a special exit room where I would hand my completed test to the testing center worker, who would run it through a scanner and hand me a printout with my test score within minutes (depending on how many people were in line before me). Maybe that's why I'm into immediate gratification when it comes to obtaining information.
Instead, I am at the mercy of the facility's immediate access to a radiologist, who reads and interprets the image. It's a function of organizational structure and communication channels between technician and radiologist, and not anything against radiologists - I have a friend who is a radiologist! And then the radiologist communicates the results to my doctor, who may want a written report and/or a copy of the actual images. My doctor does whatever they need to do with the information, and then if I cry "uncle" loud enough, I get the result.
I understand the necessity of the process, but I really wish there were a more streamlined way to manage it. I think the thing I dreaded most before I knew the result was if it were going to be one that required more testing.
Meanwhile, my fevers continue to move up and down the FM dial. 104.5, 103.8, 102.2, 101.9, 97.8, 99.9, 100.3, 104.1, etc., etc. It's my inner disc jockey. I was a disc jockey during my senior year in high school. Our high school had a radio station that played top 40 hits, and seniors could take a class in "radio", which included a part-time assignment after school as a disc jockey for the station. KPGR - I remember the call letters, but I can't remember the spot on the dial. I'm hoping my current "station" starts to consistently stay on the "negative" side of 100 degrees. The fever doesn't bother me as much as the chills. Those are a constant discomfort, no matter how many layers I pile on to keep me warm. We are going to change my medication on Monday, when my oncologist and neurologist can come up with an alternative. The expectation is that it will provide immediate relief, so I'm anxious to prove that theory correct.
Thursday, March 23, 2006
O, that it were only a fever!
You know you have brain cancer when...
...Meningitis sounds like good news! I received news today that the lab work came back with absolutely no indications of any kind of infection. And I received clarification that the main reason the MRI was ordered was not really to look for signs of meningitis, but because of the strange ache & dysesthesia (vocabulary word of the day) in my upper back. They want to be cautious and hopefully rule out tumor progression into other parts of the central nervous system. Chances are, they say, it will be negative. But to me, the idea that it came up as a prudent course of action in response to this mystery feeling in my back, makes me more than a little worried.
The thing about brain cancer is that it doesn't metastasize to other parts of the body (it just makes swiss cheese out of your brain), but it can definitely spread to other parts of the central nervous system, like the spinal column, the meninges, and cerebral spinal fluid. They are fair game, because they are all part of the same general group of body parts.
When faced with worrisome things, my inital reaction is to play through all the possible scenarios (kind of like that computer on the movie Wargames). So I'm already thinking through possible positive results and the treatments that would follow. Would a tumor on the spinal cord be inoperable? Would I risk paralysis? Would radiation be tried instead? Does it become possible to spread elsewhere, once it is outside the brain? Is this a tumor recurrence that makes me eligible for experimental treatment?
And what I really wish I knew...with all this thinking a few steps ahead of the game, why am I not a better chess player?
Meanwhile, the fever and chills continue. Because there is no sign of any infection, the latest theory is that it is some kind of reaction to my anti-seizure medication. The timing makes sense, because this started after the first week of tapering down on my radiation steroids. Those steroids may have been masking any earlier reactions. We're thinking about that, and we may have to change to a different medication if the fever continues.
But seriously - I was almost rooting for meningitis. Meanwhile, we will pray and pray and pray and pray (and we know that others will, too - THANK YOU), and hopefully we'll just be ruling something out instead of reaching a grim diagnosis. No matter what, though, those prayers will be helping me in many ways. All will ultimately be well, I continue to remind myself. What I will have to endure until then is probably going to be rocky at times. But I will always be blessed with what I need to endure all things, and the prayers of others really help unlock those blessings for me.
...Meningitis sounds like good news! I received news today that the lab work came back with absolutely no indications of any kind of infection. And I received clarification that the main reason the MRI was ordered was not really to look for signs of meningitis, but because of the strange ache & dysesthesia (vocabulary word of the day) in my upper back. They want to be cautious and hopefully rule out tumor progression into other parts of the central nervous system. Chances are, they say, it will be negative. But to me, the idea that it came up as a prudent course of action in response to this mystery feeling in my back, makes me more than a little worried.
The thing about brain cancer is that it doesn't metastasize to other parts of the body (it just makes swiss cheese out of your brain), but it can definitely spread to other parts of the central nervous system, like the spinal column, the meninges, and cerebral spinal fluid. They are fair game, because they are all part of the same general group of body parts.
When faced with worrisome things, my inital reaction is to play through all the possible scenarios (kind of like that computer on the movie Wargames). So I'm already thinking through possible positive results and the treatments that would follow. Would a tumor on the spinal cord be inoperable? Would I risk paralysis? Would radiation be tried instead? Does it become possible to spread elsewhere, once it is outside the brain? Is this a tumor recurrence that makes me eligible for experimental treatment?
And what I really wish I knew...with all this thinking a few steps ahead of the game, why am I not a better chess player?
Meanwhile, the fever and chills continue. Because there is no sign of any infection, the latest theory is that it is some kind of reaction to my anti-seizure medication. The timing makes sense, because this started after the first week of tapering down on my radiation steroids. Those steroids may have been masking any earlier reactions. We're thinking about that, and we may have to change to a different medication if the fever continues.
But seriously - I was almost rooting for meningitis. Meanwhile, we will pray and pray and pray and pray (and we know that others will, too - THANK YOU), and hopefully we'll just be ruling something out instead of reaching a grim diagnosis. No matter what, though, those prayers will be helping me in many ways. All will ultimately be well, I continue to remind myself. What I will have to endure until then is probably going to be rocky at times. But I will always be blessed with what I need to endure all things, and the prayers of others really help unlock those blessings for me.
Is that a radio station, or my temperature?
104.1 - KFEV
Yeah, that was me at 3:00 this morning! It's closer to normal now, but it was a rough night.
Of course, then I remembered something I read earlier about hyperthermia as a cancer treatment. Hyperthermia is the exposure of tissue to high temperatures, damaging and killing cancer cells while preserving normal tissues. So I laughed to myself and wondered if maybe this fever thing was God's way of treating my cancer with hyperthermia!
Yeah, that was me at 3:00 this morning! It's closer to normal now, but it was a rough night.
Of course, then I remembered something I read earlier about hyperthermia as a cancer treatment. Hyperthermia is the exposure of tissue to high temperatures, damaging and killing cancer cells while preserving normal tissues. So I laughed to myself and wondered if maybe this fever thing was God's way of treating my cancer with hyperthermia!
Wednesday, March 22, 2006
Fever!
...in the morning, fever all through the night...FEVER, when you kiss me, fever when you hold me tight...
Well, anyway, I woke up this morning after a restless night with a fever of about 102. I don't really have any other symptoms, so it was kind of disturbing. And because I also have some neck and upper back soreness (which may simply be due to the difficulty finding a good sleeping position right now with a sensitive head), my oncologist wants to rule out meningitis. They also did some neuro tests to check for clinical evidence of tumor progression to the spinal column (glioblastoma can rapidly spread throughout the central nervous system), and I am told that those all looked good. However, after requesting a substantial blood donation for lab tests (normally when I give away that much blood I get juice, a packet of cookies, and a free t-shirt from the blood bank), my oncologist also ordered an MRI scan of the thoracic spine. I'm told that this is to decide whether a spinal tap is needed, because infection might show up as inflammation on the MRI. But I also worry that maybe she wants to be sure and rule out tumor progresson on the spine, and I wonder if that is the real reason for the MRI. I don't know. It's kind of creepy. The scan is scheduled for early Friday afternoon, so we'll know more then. Hopefully we'll find a whole lot of nothing.
...just in case anyone wants something new to pray for!
Well, anyway, I woke up this morning after a restless night with a fever of about 102. I don't really have any other symptoms, so it was kind of disturbing. And because I also have some neck and upper back soreness (which may simply be due to the difficulty finding a good sleeping position right now with a sensitive head), my oncologist wants to rule out meningitis. They also did some neuro tests to check for clinical evidence of tumor progression to the spinal column (glioblastoma can rapidly spread throughout the central nervous system), and I am told that those all looked good. However, after requesting a substantial blood donation for lab tests (normally when I give away that much blood I get juice, a packet of cookies, and a free t-shirt from the blood bank), my oncologist also ordered an MRI scan of the thoracic spine. I'm told that this is to decide whether a spinal tap is needed, because infection might show up as inflammation on the MRI. But I also worry that maybe she wants to be sure and rule out tumor progresson on the spine, and I wonder if that is the real reason for the MRI. I don't know. It's kind of creepy. The scan is scheduled for early Friday afternoon, so we'll know more then. Hopefully we'll find a whole lot of nothing.
...just in case anyone wants something new to pray for!
Tuesday, March 21, 2006
Homecoming Day Photo
...Just thought I'd share our updated family picture, taken on our son's "Homecoming Day" - March 15. (See, I told you I have more hair than my husband!) I'm also sporting my "Livestrong" band as I hold on tight to my little boy's dear hand, and I'm clinging like Velcro to my Prince Charming as we both hug our baby girl. Our for-evvvvvv-er family. Thousands of years from now, after we all have our turn to go the way of the earth, we'll still be a family. We'll still hold tight to each other. We'll still love each other. The sorrows of mortal life will be a sad but distant memory, while the joys of our relationships will continue to be vivid and bright.
My Blog is Blank!
It's nice to know that people notice when something is up! I received a flurry of emails from concerned readers, who noticed that my blog was "blank" when they went to my URL. Sure enough, I had the same problem. I have notified Blogger.com, and hopefully they are fixing it. Meanwhile, I am posting this in the hopes that it will kickstart a new publishing of my blog in order to restore it. And meanwhile, for those who kindly expressed concern for me, rest assured that the problem lies with Blogger.com, not with "the blogger"!
p.s. - I think it helped!
p.s. - I think it helped!
Sunday, March 19, 2006
For those who comment
As many of you are aware, this blog has a "comment" option, where readers can post a comment to me. The comment remains on the website, and also comes to my email account. They are always welcome and appreciated, although sometimes they come to me from anonymous sources, where there is no opportunity for me to reply directly to the author.
So, first of all - for those of you who do comment: THANK YOU! Your comments have been supportive and encouraging, and they always make my day. I wish that I could reply to you directly, but for now, here are some ((((HUGS)))) and big thanks for you.
One comment came from someone who is LDS, whose husband was also diagnosed with glioblastoma multiforme. They are also adoptive parents and the husband served in many of the same callings that I have held. He has been a year out with no recurrence. I would LOVE to find a way to get in touch with these people!!!!
Other cancer survivors or loved ones have contacted me, and I appreciate that very much. Hopefully we can share stories of survivorship for a long, long time.
Some have asked questions in their comments. So here are some of those questions along with my answers:
Q. Are my children's adoptions "open" adoptions? Do we send updates to the birth parents, and are they aware of my cancer?
A. Both adoptions are considered "open", in the sense that we have had face-to-face contact with the birth mothers, and we have each others' identifying information. It works well, because we are all secure in our roles relating to these wonderful children. Birth moms gave these children healthy, beautiful bodies, and placed them in loving families. Our job took over shortly after birth. We are to be their parents, and care for them and raise them and love them. (And help them become part of a for-evvvv-er family.) We have email contact with Jacob's birth family, and we love sharing photos and updates so that we can each see how this process has blessed all involved. We love his birth mom so much and enjoy hearing how she is doing. Emma's birth mom has been less communicative for now. We sent her some pictures and encouraged her to write us back, but we haven't received a reply. Maybe someday she will write us, but we want to respect her privacy and her feelings, which are probably tender at times. We love her, too. Jacob's birth family knows about my cancer, and is praying for me. Emma's birth mom does not know about my cancer.
Q. What is a "gas pump virgin"?
A. ME! What this means is that I have never pumped gas. NEVER. (So hey - we know the brain tumor didn't come from petroleum fumes!) When I turned sixteen, one of my friends gave me a book called, Real Women Don't Pump Gas. It was a humorous book, but I decided to take it seriously. Plus, at the time I was dating Jared, who was already practicing his Prince Charming skills. He always made sure my tank was full. And when he spent two years serving a mission in Japan, I didn't have a car for most of that time. I was going to college and I lived close to campus. And when I did have a car, I learned that there was a gas station near campus that did full-serve at no additional charge. After I married my Prince Charming, he let me continue this silly obsession. And now that I can't drive anyway, the matter is moot.
Q. How would you prefer people to talk about what you're surviving? That is, not mention cancer by name and just keep on "as normal", or mention it straight out in conversation, or say "I'm sorry that you have cancer", wait until you bring it up - or something else? Or does it change by the hour?
A. I happen to be an open book about this kind of thing, in case you haven't noticed from my blog! On the other hand, I know that in this situation it may be hard for people to know what to say, especially since it seems like a very touchy subject. But for me, it's such a part of my life that I am more desensitized to things than most people would expect me to be. It is surprisingly "not touchy" for me to address. I have had many people initially come up and tell me things like, "I heard about your situation, and I just wanted you to know that you're in my thoughts and prayers." And that is really, really nice to hear. Or people who have already broken that ground might ask, "Hey - I've been thinking about you - how's it going for you today?" That's a good one, because it's specific and easy to answer ("I'm a little tired today, but I'm excited because I'm feeling a lot better than I thought I would be right now.") I've had curious people ask me detailed questions about certain aspects of my treatment, or the testing I will do, etc., and I'm totally fine with that. Specific questions are always easier to answer than than the general "How are you?" (I always think, "Fine...except, oops - not really fine, because I have cancer.") As far as whether you should mention cancer by name, it's really okay with me to hear it. It is what it is, and it's no big deal to call it what it is. I am a little more cautious about what is said within earshot of my son, though, because even though we have prepared him with "the talk", I don't want him to overhear things that might scare him. But as I said before, I'm generally an open book about this and don't mind people approaching me and asking me about anything, or sharing their love and best wishes and hugs - and prayers!!!!
For those who comment, again - thank you. If you ever want to contact me directly instead of using the comment feature, please feel free to email me at (I'm going to spell out some things so that it doesn't look like an email address to spam machines who crawl through this site): kristaoakes(at)gmail(dot)com
So, first of all - for those of you who do comment: THANK YOU! Your comments have been supportive and encouraging, and they always make my day. I wish that I could reply to you directly, but for now, here are some ((((HUGS)))) and big thanks for you.
One comment came from someone who is LDS, whose husband was also diagnosed with glioblastoma multiforme. They are also adoptive parents and the husband served in many of the same callings that I have held. He has been a year out with no recurrence. I would LOVE to find a way to get in touch with these people!!!!
Other cancer survivors or loved ones have contacted me, and I appreciate that very much. Hopefully we can share stories of survivorship for a long, long time.
Some have asked questions in their comments. So here are some of those questions along with my answers:
Q. Are my children's adoptions "open" adoptions? Do we send updates to the birth parents, and are they aware of my cancer?
A. Both adoptions are considered "open", in the sense that we have had face-to-face contact with the birth mothers, and we have each others' identifying information. It works well, because we are all secure in our roles relating to these wonderful children. Birth moms gave these children healthy, beautiful bodies, and placed them in loving families. Our job took over shortly after birth. We are to be their parents, and care for them and raise them and love them. (And help them become part of a for-evvvv-er family.) We have email contact with Jacob's birth family, and we love sharing photos and updates so that we can each see how this process has blessed all involved. We love his birth mom so much and enjoy hearing how she is doing. Emma's birth mom has been less communicative for now. We sent her some pictures and encouraged her to write us back, but we haven't received a reply. Maybe someday she will write us, but we want to respect her privacy and her feelings, which are probably tender at times. We love her, too. Jacob's birth family knows about my cancer, and is praying for me. Emma's birth mom does not know about my cancer.
Q. What is a "gas pump virgin"?
A. ME! What this means is that I have never pumped gas. NEVER. (So hey - we know the brain tumor didn't come from petroleum fumes!) When I turned sixteen, one of my friends gave me a book called, Real Women Don't Pump Gas. It was a humorous book, but I decided to take it seriously. Plus, at the time I was dating Jared, who was already practicing his Prince Charming skills. He always made sure my tank was full. And when he spent two years serving a mission in Japan, I didn't have a car for most of that time. I was going to college and I lived close to campus. And when I did have a car, I learned that there was a gas station near campus that did full-serve at no additional charge. After I married my Prince Charming, he let me continue this silly obsession. And now that I can't drive anyway, the matter is moot.
Q. How would you prefer people to talk about what you're surviving? That is, not mention cancer by name and just keep on "as normal", or mention it straight out in conversation, or say "I'm sorry that you have cancer", wait until you bring it up - or something else? Or does it change by the hour?
A. I happen to be an open book about this kind of thing, in case you haven't noticed from my blog! On the other hand, I know that in this situation it may be hard for people to know what to say, especially since it seems like a very touchy subject. But for me, it's such a part of my life that I am more desensitized to things than most people would expect me to be. It is surprisingly "not touchy" for me to address. I have had many people initially come up and tell me things like, "I heard about your situation, and I just wanted you to know that you're in my thoughts and prayers." And that is really, really nice to hear. Or people who have already broken that ground might ask, "Hey - I've been thinking about you - how's it going for you today?" That's a good one, because it's specific and easy to answer ("I'm a little tired today, but I'm excited because I'm feeling a lot better than I thought I would be right now.") I've had curious people ask me detailed questions about certain aspects of my treatment, or the testing I will do, etc., and I'm totally fine with that. Specific questions are always easier to answer than than the general "How are you?" (I always think, "Fine...except, oops - not really fine, because I have cancer.") As far as whether you should mention cancer by name, it's really okay with me to hear it. It is what it is, and it's no big deal to call it what it is. I am a little more cautious about what is said within earshot of my son, though, because even though we have prepared him with "the talk", I don't want him to overhear things that might scare him. But as I said before, I'm generally an open book about this and don't mind people approaching me and asking me about anything, or sharing their love and best wishes and hugs - and prayers!!!!
For those who comment, again - thank you. If you ever want to contact me directly instead of using the comment feature, please feel free to email me at (I'm going to spell out some things so that it doesn't look like an email address to spam machines who crawl through this site): kristaoakes(at)gmail(dot)com
Friday, March 17, 2006
My Dream Team
I've decided to be completely shameless in promoting a fundraiser for the American Cancer Society. They have been very generous in their support resources for me, and they also provide a lot of good education that may help save lives through early detection (unless, of course, you have glioblastoma multiforme, for which there is no early detection). The other reason I am participating in this fundraiser is that it is an activity that I CAN do. It's life-affirming, because it is a physical activity. It's the Relay For Life.
The Relay For Life is going to take place on May 5 & 6 in Plano, Texas. It starts at 7 pm on Friday, and goes until 7 am on Saturday (because cancer never sleeps). The way this event works is that each team has to have someone walking or running on the track during the 12-hour relay. So obviously, the bigger the team, the less time each person has to spend on the track! There will also be special things there to honor cancer survivors and memorialize those who have lost their battle. It's a very super-cool thing, and I am just really excited to do this. And I think it can become a really fun event, where we camp and eat and play and take turns on the track. They will provide food and t-shirts and stuff for those who participate.
I sent out an obnoxious email to as many people as I could, asking them to join my team. Now I am being equally obnoxious by posting information in my blog. I hope to form a really big team and have lots of fun. For those who are interested in joining my team, simply go to www.acsevents.org/tx/relay/plano and sign up to be on "Krista's Dream Team". While you are on the website there will also be opportunities to make a donation and dedicate a luminaria to a friend or loved one (cancer survivor or lost battle with cancer), which will be displayed at the event.
I look forward to hopefully seeing lots of these readers there!
The Relay For Life is going to take place on May 5 & 6 in Plano, Texas. It starts at 7 pm on Friday, and goes until 7 am on Saturday (because cancer never sleeps). The way this event works is that each team has to have someone walking or running on the track during the 12-hour relay. So obviously, the bigger the team, the less time each person has to spend on the track! There will also be special things there to honor cancer survivors and memorialize those who have lost their battle. It's a very super-cool thing, and I am just really excited to do this. And I think it can become a really fun event, where we camp and eat and play and take turns on the track. They will provide food and t-shirts and stuff for those who participate.
I sent out an obnoxious email to as many people as I could, asking them to join my team. Now I am being equally obnoxious by posting information in my blog. I hope to form a really big team and have lots of fun. For those who are interested in joining my team, simply go to www.acsevents.org/tx/relay/plano and sign up to be on "Krista's Dream Team". While you are on the website there will also be opportunities to make a donation and dedicate a luminaria to a friend or loved one (cancer survivor or lost battle with cancer), which will be displayed at the event.
I look forward to hopefully seeing lots of these readers there!
Thursday, March 16, 2006
Lucky me
I continue to be blanketed with many deeds of service, from childcare to meals to house cleaning, to driving, and anything else that I need. It's incredible. One of the women from my church who came yesterday afternoon to help with childcare also gave me a profound thought. Something so awesome, I can't help but share it.
In order to understand it, I should preface with a little background of LDS doctrine, which includes the concept that before the earth was formed, we lived as spirits with our Heavenly Father. He had a plan for us, which included the creation of the earth and our being born into it so that we could receive a body and use our free agency during mortality to be tested and tried, and we would have a Savior who would help us overcome both physical death (through the Resurrection) and spiritual death, or sin, (through the Atonement) so that we could one day return to our Heavenly Father. Satan rebelled against this plan and was cast down, along with many spirits who chose to follow him. They were denied the opportunity to be born and receive a body on this earth. In the book of Matthew, there is a story where Jesus comes across two men possessed with evil spirits. As he is casting them out, the spirits beg him to be put into swine. They go into the swine and drown themselves. But to them, it was at least a chance at having a mortal body.
My friend's comment was that no matter what physical infirmities we have to endure in this lifetime, no matter how imperfect our bodies are, there is someone who is jealous of us. There are spirits who lost their chance to be here, and they probably look very longingly upon us, even when we are in a hospital bed or on a radiation table, or when we are taking painkillers or anxiously awaiting the results of a medical test. Even if our lives are shorter than we want them to be. I picture them looking at my situation and sounding very much like Napoleon Dynamite, when he looks at Pedro's bicycle and says, "LUCKY!!!!" I have something that they envy, and it's just "too bad/so sad" for them.
Tomorrow is St. Patrick's Day, and while I'm not Irish, maybe I just have luck on my mind (ooh - I hope literally) because of what my friend said. I am lucky. I am able to participate in the big plan. I hope this plan needs me hanging around here for a long time so that my kids will have their mom. I hope this plan needs me to stay here and grow old with my husband. I hope and pray a lot. But regardless of what is in store for me, I realize that I am very lucky.
In order to understand it, I should preface with a little background of LDS doctrine, which includes the concept that before the earth was formed, we lived as spirits with our Heavenly Father. He had a plan for us, which included the creation of the earth and our being born into it so that we could receive a body and use our free agency during mortality to be tested and tried, and we would have a Savior who would help us overcome both physical death (through the Resurrection) and spiritual death, or sin, (through the Atonement) so that we could one day return to our Heavenly Father. Satan rebelled against this plan and was cast down, along with many spirits who chose to follow him. They were denied the opportunity to be born and receive a body on this earth. In the book of Matthew, there is a story where Jesus comes across two men possessed with evil spirits. As he is casting them out, the spirits beg him to be put into swine. They go into the swine and drown themselves. But to them, it was at least a chance at having a mortal body.
My friend's comment was that no matter what physical infirmities we have to endure in this lifetime, no matter how imperfect our bodies are, there is someone who is jealous of us. There are spirits who lost their chance to be here, and they probably look very longingly upon us, even when we are in a hospital bed or on a radiation table, or when we are taking painkillers or anxiously awaiting the results of a medical test. Even if our lives are shorter than we want them to be. I picture them looking at my situation and sounding very much like Napoleon Dynamite, when he looks at Pedro's bicycle and says, "LUCKY!!!!" I have something that they envy, and it's just "too bad/so sad" for them.
Tomorrow is St. Patrick's Day, and while I'm not Irish, maybe I just have luck on my mind (ooh - I hope literally) because of what my friend said. I am lucky. I am able to participate in the big plan. I hope this plan needs me hanging around here for a long time so that my kids will have their mom. I hope this plan needs me to stay here and grow old with my husband. I hope and pray a lot. But regardless of what is in store for me, I realize that I am very lucky.
Wednesday, March 15, 2006
Everything is a neuro test
It's funny how any situation can put a different pair of "glasses" on, so that everything is seen in a new way. For example, right now, everything seems like a neuro test. If I go out to get the mail, and I bound (carefully) up the front steps leading to my house, I notice how coordinated my actions are, and I think: "Good - I passed that neuro test!"
The other day I was sorting socks in my closet, and I began enumerating the neurological functions that were required in order to complete that task: short-term memory, organizational ability, etc. Last night I sang at a women's group event at our church, and it was a female barbershop quartet version of "You'll Never Walk Alone", and I had the "lead" voice. I sang those tight harmonies and all those words from memory. Of course, it was because I couldn't find where I had put my copy of the music, so I had to take off a couple points for that!!! Today I was filling out my son's Scholastic Book order form, and I added up the totals in my head. Self-administered neuro tests - and all passed!
By the way, the words to that song I did last night are very relevant to me:
When you walk through a storm, hold your head up high
And don't be afraid of the dark;
At the end of the storm is a golden sky
And the sweet silver song of a lark.
Walk on through the wind, walk on through the rain,
Though your dreams be tossed and blown,
Walk on, walk on with hope in your heart,
And you'll never walk alone; you'll never walk alone.
Hey, hey - I just put that down from memory, so I guess I just passed another one!
The other day I was sorting socks in my closet, and I began enumerating the neurological functions that were required in order to complete that task: short-term memory, organizational ability, etc. Last night I sang at a women's group event at our church, and it was a female barbershop quartet version of "You'll Never Walk Alone", and I had the "lead" voice. I sang those tight harmonies and all those words from memory. Of course, it was because I couldn't find where I had put my copy of the music, so I had to take off a couple points for that!!! Today I was filling out my son's Scholastic Book order form, and I added up the totals in my head. Self-administered neuro tests - and all passed!
By the way, the words to that song I did last night are very relevant to me:
When you walk through a storm, hold your head up high
And don't be afraid of the dark;
At the end of the storm is a golden sky
And the sweet silver song of a lark.
Walk on through the wind, walk on through the rain,
Though your dreams be tossed and blown,
Walk on, walk on with hope in your heart,
And you'll never walk alone; you'll never walk alone.
Hey, hey - I just put that down from memory, so I guess I just passed another one!
Tuesday, March 14, 2006
Cancer has its privileges
I found a book called, Cancer Has its Privileges. I haven't read it yet, but the title often comes to mind as little "privileges" or benefits make themselves known to me.
This weekend was the beginning of the season of holidays for our son, who turned five yesterday. We had many family members come up for the weekend, and on Saturday we had a baseball-themed party for our son, who is a budding baseball star (and whose t-ball jersey from last year happened to be #5, so it was perfect to wear for his #5 birthday). As we made preparations for the event, going all out to preserve the baseball theme in our apparel, decorations, food, etc., a thought occurred to us. In keeping with some of the less fortunate MLB traditions, this birthday boy's mother happens to be on steroids! I'm usually really dedicated with his birthday celebrations, but I think this put me over the top! We had a good laugh about it. Cancer has its privileges.
On Sunday I helped the Primary children sing Happy Birthday to Jacob. Yesterday I sent cupcakes with him to preschool and to soccer practice. I later wondered if it was a bad idea to hand out cupcakes to soccer kids who are finishing up practice right before dinnertime, but the deed was already done. And I figured, well, at least people tend to be more forgiving of the "cancer lady"! Cancer has its privileges.
The four of us went from soccer practice to Jacob's favorite pizza & game place for dinner and a little family party. He ate a slice and played some games and won some prizes and opened the presents we gave him. When life becomes precious, little moments (like watching a five-year-old boy open the monster truck that his daddy gave him) are sweeter than ever. Cancer has its privileges.
As I said earlier, this is just the beginning of the season of holidays that we celebrate with Jacob. We celebrate his birthday, of course. Tomorrow we celebrate "homecoming day" - the day we brought him home. May 3 is Adoption Day, and June 9 is Temple Day. And then it starts all over again with our daughter, Emma, whose birthday launches her season of holidays on June 20. It's good stuff. Motherhood also has its privileges.
This weekend was the beginning of the season of holidays for our son, who turned five yesterday. We had many family members come up for the weekend, and on Saturday we had a baseball-themed party for our son, who is a budding baseball star (and whose t-ball jersey from last year happened to be #5, so it was perfect to wear for his #5 birthday). As we made preparations for the event, going all out to preserve the baseball theme in our apparel, decorations, food, etc., a thought occurred to us. In keeping with some of the less fortunate MLB traditions, this birthday boy's mother happens to be on steroids! I'm usually really dedicated with his birthday celebrations, but I think this put me over the top! We had a good laugh about it. Cancer has its privileges.
On Sunday I helped the Primary children sing Happy Birthday to Jacob. Yesterday I sent cupcakes with him to preschool and to soccer practice. I later wondered if it was a bad idea to hand out cupcakes to soccer kids who are finishing up practice right before dinnertime, but the deed was already done. And I figured, well, at least people tend to be more forgiving of the "cancer lady"! Cancer has its privileges.
The four of us went from soccer practice to Jacob's favorite pizza & game place for dinner and a little family party. He ate a slice and played some games and won some prizes and opened the presents we gave him. When life becomes precious, little moments (like watching a five-year-old boy open the monster truck that his daddy gave him) are sweeter than ever. Cancer has its privileges.
As I said earlier, this is just the beginning of the season of holidays that we celebrate with Jacob. We celebrate his birthday, of course. Tomorrow we celebrate "homecoming day" - the day we brought him home. May 3 is Adoption Day, and June 9 is Temple Day. And then it starts all over again with our daughter, Emma, whose birthday launches her season of holidays on June 20. It's good stuff. Motherhood also has its privileges.
Wednesday, March 08, 2006
The Dread Pirate Roberts
We watched a little bit of The Princess Bride yesterday evening - one of those favorite classics from my college days that is rich in quotables. ("Inconceivable!") Many years ago, as newlyweds, we attended a Princess Bride party at the home of one of our high school buddies, where we each had to dress as a character from the movie. My husband and I went as R.O.U.S.'s (Rodents Of Unusual Size), with rat head hats made from construction paper and tails made out of rope, attached to our brown shirts and pants. It was fun.
Anyway, there's that part in the movie where Westley is captured by the Dread Pirate Roberts, who never takes prisoners alive. He is presumed dead for five years, but shows up later. He tells his tale of how he survived. He persuaded the pirate to keep him alive by sharing his story of love for Princess Buttercup. The pirate decides to try him out as a protege and potential heir to the "Dread Pirate Roberts" name, but every night he bids him good night, saying, "Sleep well - I'll most likely kill you in the morning." Westley manages to survive each day, and five years later returns to his princess as the new Dread Pirate Roberts.
There is another scene where he is imprisoned by an evil prince and tortured to death in a machine designed to "suck out life." His friends take his "mostly dead" body to Max the Miracle Worker (played hilariously by Billy Crystal) for a miracle. Max inflates Westley's body with a bellows and pushes on his chest, asking him what he has to live for. "Truuuuuue looooooove...." is the groan that comes out. The miracle pill that Max designs (and coats with chocolate to make it go down easier) ends up working, and Westley lives to claim his princess (his true love).
Sometimes I feel like I have the Dread Pirate Roberts inside me. "Sleep well...I'll most likely kill you in the morning..." he tells me. But hopefully I'll just survive each day, one day/one hurdle at a time, and look back on this five years from now as a memory. Hopefully by then that old pirate will be gone, and I will be in charge. After all, what do I have to live for? Truuuuuuuue looooooove! I am married to the great love of my life, and I have two children who take up whatever is left of my heart. I have true love. For - evvvvv - er love. Instead of Max, I have gone to the Real Miracle Worker, and hopefully this truuuuue loooooove (combined with faith) will help bring about a miracle for me. And maybe chocolate makes anything go down easier, so maybe we should have some of that on hand!
Anyway, there's that part in the movie where Westley is captured by the Dread Pirate Roberts, who never takes prisoners alive. He is presumed dead for five years, but shows up later. He tells his tale of how he survived. He persuaded the pirate to keep him alive by sharing his story of love for Princess Buttercup. The pirate decides to try him out as a protege and potential heir to the "Dread Pirate Roberts" name, but every night he bids him good night, saying, "Sleep well - I'll most likely kill you in the morning." Westley manages to survive each day, and five years later returns to his princess as the new Dread Pirate Roberts.
There is another scene where he is imprisoned by an evil prince and tortured to death in a machine designed to "suck out life." His friends take his "mostly dead" body to Max the Miracle Worker (played hilariously by Billy Crystal) for a miracle. Max inflates Westley's body with a bellows and pushes on his chest, asking him what he has to live for. "Truuuuuue looooooove...." is the groan that comes out. The miracle pill that Max designs (and coats with chocolate to make it go down easier) ends up working, and Westley lives to claim his princess (his true love).
Sometimes I feel like I have the Dread Pirate Roberts inside me. "Sleep well...I'll most likely kill you in the morning..." he tells me. But hopefully I'll just survive each day, one day/one hurdle at a time, and look back on this five years from now as a memory. Hopefully by then that old pirate will be gone, and I will be in charge. After all, what do I have to live for? Truuuuuuuue looooooove! I am married to the great love of my life, and I have two children who take up whatever is left of my heart. I have true love. For - evvvvv - er love. Instead of Max, I have gone to the Real Miracle Worker, and hopefully this truuuuue loooooove (combined with faith) will help bring about a miracle for me. And maybe chocolate makes anything go down easier, so maybe we should have some of that on hand!
You have a terminal condition
One thing that makes my skin crawl is when I am told that the primary objective of the treatment for glioblastoma multiforme is to "prolong life as much as possible." Not "to eradicate the cancer once and for all." The message is that I have an incurable illness that WILL kill me, but the treatments will hopefully let me hang on a little longer. It seems almost (not quite - but almost) undignified, this struggle to try and postpone something that is regarded as inevitable.
But here's the deal: I was born with a terminal condition. We are all born with a terminal condition. It's called LIFE. Everyone who lives, dies. We all try to prolong life as much as possible, and that's not undignified. Life is precious. Life is valuable. Life is worth trying to protect. Life is worth our best efforts to savor and enjoy and respect. Someday it will be over, and something new will begin in our after-life experience.
I'll put on my Frank Capra hat, because I believe that we are born at a time that is essential to what happens in our lives. If I had been born even one year earlier or later, I probably wouldn't have had the same opportunities to meet and fall in love with my husband. There are a lot of things that would have been different. And as much as we wanted a child for years before we got one, I believe that the timing of our son's birth was an essential part of who he is, who he will interact with, and what he will do in his life.
And now I'll put on my Solomon hat (people think he wrote Ecclesiastes)or pretend I'm one of the Byrds, because just as there is a time to be born, there is a time to die ("turn, turn, turn..."). I believe that there may be an order and timing of this as well, which perhaps is just as essential to our ultimate destiny. I believe that I will be given the time I need to do whatever work is essential for me to do here, before I go. And I'll put on my Orson Wells hat (although I didn't gain THAT much weight on steroids!!!) and say that just as Paul Masson will "sell no wine before it's time," I am sure that God will "take no 'whin'-ing sick person before their time."
When I mentioned to the Messiah choir director that there is a risk of this being my last year to perform, he commented that this is true for any of us. He's right. Because we all have a terminal condition called life. Some of us get more quantity of life than others, and some of us get less. We can try and prolong it as much as possible, but it is often ultimately out of our hands. What we can control is the quality of our lives, each day that we live.
But here's the deal: I was born with a terminal condition. We are all born with a terminal condition. It's called LIFE. Everyone who lives, dies. We all try to prolong life as much as possible, and that's not undignified. Life is precious. Life is valuable. Life is worth trying to protect. Life is worth our best efforts to savor and enjoy and respect. Someday it will be over, and something new will begin in our after-life experience.
I'll put on my Frank Capra hat, because I believe that we are born at a time that is essential to what happens in our lives. If I had been born even one year earlier or later, I probably wouldn't have had the same opportunities to meet and fall in love with my husband. There are a lot of things that would have been different. And as much as we wanted a child for years before we got one, I believe that the timing of our son's birth was an essential part of who he is, who he will interact with, and what he will do in his life.
And now I'll put on my Solomon hat (people think he wrote Ecclesiastes)or pretend I'm one of the Byrds, because just as there is a time to be born, there is a time to die ("turn, turn, turn..."). I believe that there may be an order and timing of this as well, which perhaps is just as essential to our ultimate destiny. I believe that I will be given the time I need to do whatever work is essential for me to do here, before I go. And I'll put on my Orson Wells hat (although I didn't gain THAT much weight on steroids!!!) and say that just as Paul Masson will "sell no wine before it's time," I am sure that God will "take no 'whin'-ing sick person before their time."
When I mentioned to the Messiah choir director that there is a risk of this being my last year to perform, he commented that this is true for any of us. He's right. Because we all have a terminal condition called life. Some of us get more quantity of life than others, and some of us get less. We can try and prolong it as much as possible, but it is often ultimately out of our hands. What we can control is the quality of our lives, each day that we live.
Tuesday, March 07, 2006
Now What
Today I sit here a little more tired than usual. I have tolerated my treatments SO very well, and for that I am really excited and grateful. But right now is a time of healing from yesterday's "boost", which was actually a stereotactic radiosurgical procedure. It's supposedly even more precise than gamma knife surgery. It was a little more intense than I expected, and while it was all very good, I am going through a recovery stage where I have to pamper myself more than usual (oh, darn).
Also, as the big ZAPS were going through my head, I figured I was probably turning into some kind of super-hero. Luckily there wasn't some kind of insect crawling through the radiation room, or I'd be Ant Woman, Roach Girl, or something like that. Maybe I get to choose my super powers. What would I choose?
1. Enhanced cancer-fighting ability, of course!
2. Enhanced calorie burning ability (especially since clog dancing is probably out for a while during my recovery, and girl scouts are out in full force with their cookies!)
3. Mrs. Multi-Task (able to bring home the bacon, fry it up in the pan, etc.)
4. Super Mom (my personal favorite - able to teach my son to read AND motivate him to stop sucking his thumb; throw the birthday party of a lifetime for him on Saturday, help my daughter start walking, and make sure they always know they are loved)
5. Blogger Girl (able to post faster and better)
6. Captain Clean-o (no clutter can withstand me; energy to keep things organized)
7. Good Humor Girl (able to laugh at anything that comes my way...oh, and I guess able to eat ice cream with that enhanced calorie burning ability)
...or anything that lets me wear cool stuff, especially if my cankles will finally fit into a cute boot.
Okay, so here's what's next...
I rest from treatment until April 5th. Meanwhile, I start tapering off the steroids (carefully this time, to avoid painful swelling and depression). On April 5th I have an MRI (and will beg for lots of prayers again), and I take the films to my neuro-oncologist, where she will read them and tell me how things are going. My radiation oncologist also wants to see the films, so I will visit him as well. If everything is okay, I start my maintenance regimen of chemotherapy. Five days a month of high dose Temodar, with weekly blood tests, monthly doctor visits, and an MRI scan every other month. At least while things remain status quo. If something new pops up, we decide how to treat it based on size, location, and clinical effect.
By the way, a word about my MRI last week. It did look "good", and I got some clarification about that. The "area of concern" that my neurosurgeon saw on my MRI in January (as he and the radiation oncologist were planning my treatment) looks exactly the same on this latest scan. Meaning, whatever it is did not progress. Hopefully whatever it is, is dead. Considering the fact that glioblastoma is aggressive enough to double in size every three weeks, the fact that the recent scan looks like the baseline scan (from six weeks ago) is good news. The doctor even commented that it may continue to show up in future scans but might simply be necrosis (dead tissue). I like the idea of a dead tumor. Let's hope. But last week was indeed an accurate and reassuring scan, just as I had prayed for (and many of you joined me in that prayer, and I thank you for it).
Also, as the big ZAPS were going through my head, I figured I was probably turning into some kind of super-hero. Luckily there wasn't some kind of insect crawling through the radiation room, or I'd be Ant Woman, Roach Girl, or something like that. Maybe I get to choose my super powers. What would I choose?
1. Enhanced cancer-fighting ability, of course!
2. Enhanced calorie burning ability (especially since clog dancing is probably out for a while during my recovery, and girl scouts are out in full force with their cookies!)
3. Mrs. Multi-Task (able to bring home the bacon, fry it up in the pan, etc.)
4. Super Mom (my personal favorite - able to teach my son to read AND motivate him to stop sucking his thumb; throw the birthday party of a lifetime for him on Saturday, help my daughter start walking, and make sure they always know they are loved)
5. Blogger Girl (able to post faster and better)
6. Captain Clean-o (no clutter can withstand me; energy to keep things organized)
7. Good Humor Girl (able to laugh at anything that comes my way...oh, and I guess able to eat ice cream with that enhanced calorie burning ability)
...or anything that lets me wear cool stuff, especially if my cankles will finally fit into a cute boot.
Okay, so here's what's next...
I rest from treatment until April 5th. Meanwhile, I start tapering off the steroids (carefully this time, to avoid painful swelling and depression). On April 5th I have an MRI (and will beg for lots of prayers again), and I take the films to my neuro-oncologist, where she will read them and tell me how things are going. My radiation oncologist also wants to see the films, so I will visit him as well. If everything is okay, I start my maintenance regimen of chemotherapy. Five days a month of high dose Temodar, with weekly blood tests, monthly doctor visits, and an MRI scan every other month. At least while things remain status quo. If something new pops up, we decide how to treat it based on size, location, and clinical effect.
By the way, a word about my MRI last week. It did look "good", and I got some clarification about that. The "area of concern" that my neurosurgeon saw on my MRI in January (as he and the radiation oncologist were planning my treatment) looks exactly the same on this latest scan. Meaning, whatever it is did not progress. Hopefully whatever it is, is dead. Considering the fact that glioblastoma is aggressive enough to double in size every three weeks, the fact that the recent scan looks like the baseline scan (from six weeks ago) is good news. The doctor even commented that it may continue to show up in future scans but might simply be necrosis (dead tissue). I like the idea of a dead tumor. Let's hope. But last week was indeed an accurate and reassuring scan, just as I had prayed for (and many of you joined me in that prayer, and I thank you for it).
Monday, March 06, 2006
Thanksgiving Dinner
Sunday was a day of fasting, and while the subject of my fasting was obviously my continued petition for healing, I also made it a matter of gratitude.
Today is the last day of my six-week radiation regimen. The day of the "boost". I consider myself finished with Round One (aka, initial treatment regimen), Krista = 1, Cancer = 0. As my dad put it, hopefully I did this "Mike Tyson style", with a total KO punch. (Hey - my initials are "K.O." so why not?) But in any case, I'm coming out of the ring feeling pretty darn good, and I hope the cancer cells are dead and gone, or at least on their way there.
As we broke our fast last night at dinnertime, we had a turkey dinner. It was partly because I was cleaning out some freezer space and had pulled out a turkey earlier in the week. But it was kind of a fitting choice, since it was a Thanksgiving meal of sorts. We didn't do the stuffing/mashed potatoes/etc. like a traditional Thanksgiving feast - just some roasted vegetables and a tossed field salad and some fresh fruit and my husband's famous gravy. But it was still a symbol of gratitude.
I sit here at the end of Round One with more energy and hair than my husband (that's our little joke nowadays). I tolerated this treatment very easily - hopefully more than the cancer cells did.
Last night after dinner I went to Messiah choir practice. For the past few years I have participated in a local choir that performs Handel's Messiah on Easter Sunday. I have also been one of the soloists, and hope to do that again this year. It is one of the highlights of the Easter season for me, and the subject matter is even more precious to me now. As we sat in rehearsal last night, reviewing one of the more difficult choruses, I found myself weeping with gratitude that I could SING my guts out. I remembered the music. I had the pitches. I had the rhythms. This difficult piece was a piece of cake for me. I didn't lose that ability, despite having had cancer and cancer treatments in my right brain. It was something to be very grateful for.
The gratitude list goes on...
Today is the last day of my six-week radiation regimen. The day of the "boost". I consider myself finished with Round One (aka, initial treatment regimen), Krista = 1, Cancer = 0. As my dad put it, hopefully I did this "Mike Tyson style", with a total KO punch. (Hey - my initials are "K.O." so why not?) But in any case, I'm coming out of the ring feeling pretty darn good, and I hope the cancer cells are dead and gone, or at least on their way there.
As we broke our fast last night at dinnertime, we had a turkey dinner. It was partly because I was cleaning out some freezer space and had pulled out a turkey earlier in the week. But it was kind of a fitting choice, since it was a Thanksgiving meal of sorts. We didn't do the stuffing/mashed potatoes/etc. like a traditional Thanksgiving feast - just some roasted vegetables and a tossed field salad and some fresh fruit and my husband's famous gravy. But it was still a symbol of gratitude.
I sit here at the end of Round One with more energy and hair than my husband (that's our little joke nowadays). I tolerated this treatment very easily - hopefully more than the cancer cells did.
Last night after dinner I went to Messiah choir practice. For the past few years I have participated in a local choir that performs Handel's Messiah on Easter Sunday. I have also been one of the soloists, and hope to do that again this year. It is one of the highlights of the Easter season for me, and the subject matter is even more precious to me now. As we sat in rehearsal last night, reviewing one of the more difficult choruses, I found myself weeping with gratitude that I could SING my guts out. I remembered the music. I had the pitches. I had the rhythms. This difficult piece was a piece of cake for me. I didn't lose that ability, despite having had cancer and cancer treatments in my right brain. It was something to be very grateful for.
The gratitude list goes on...
Friday, March 03, 2006
Live Strong
I guess it's because I have my radiation at a really great facility that features the Lance Armstrong Shaped Beam Surgery System. Maybe it's because my cousin sent me Lance's book. Maybe it's because our primary care doctor gave my husband a couple of LIVESTRONG wristbands as soon as he heard the news. And maybe it's because a friend of mine just sent me a link to the Lance Armstrong Foundation website, because the LAF was looking for links to blogs from cancer survivors.
I ended up going to the LAF website and doing two things: 1) I (of course) shopped the merchandise section of the site, so we have LIVESTRONG t-shirts, caps, & etc., coming our way; and 2) I shared "my story":
http://shareyourstory.livestrong.org/siteapps/personalpage/ShowPage.aspx?c=ijIVI2PFKoG&b=738859&sid=8fLGJNMsHiKQIYOAInG
Gonna live strong.
I ended up going to the LAF website and doing two things: 1) I (of course) shopped the merchandise section of the site, so we have LIVESTRONG t-shirts, caps, & etc., coming our way; and 2) I shared "my story":
http://shareyourstory.livestrong.org/siteapps/personalpage/ShowPage.aspx?c=ijIVI2PFKoG&b=738859&sid=8fLGJNMsHiKQIYOAInG
Gonna live strong.
Thursday, March 02, 2006
The Grandma in "Parenthood"
There's a movie called Parenthood, directed by Ron Howard and starring Steve Martin as part of an all-star cast. As a caution to those who have not seen it - it has some really raunchy stuff which is unfortunate, because there are also some profoundly positive messages in the storyline. I wish there were a way to keep the good parts and trash the rest, because it really pushes the PG-13 envelope. So I'm not necessarily recommending that you go see it. But anyway...to my point...
There is one scene where the grandmother is leaving the house, but she stops in the room where Steve Martin's character is talking to his wife (played by Mary Steenburgen). She makes a very sweet and wise statement about life being like a rollercoaster, and how she liked it (the ups and downs and the excitement) as opposed to the merry-go-round, which just goes around and around. As the grandmother exits the room and goes out to the car to wait for them, Mary Steenburgen comments on how brilliant she was. Steve Martin peeks out the window and says, "Oh, yeah? Well if she's so brilliant, why is she sitting in our neighbor's car?" It's a very funny moment.
Today I felt like the grandma in Parenthood. Sometimes I feel like I have moments of brilliance, and then I can't figure out where my shoes are. Or I can count backwards from 100 by sevens with no problem, but I have to think hard to remember whether I took my morning medication. It's so silly! I remind myself that it must be simple distraction and nothing to worry about. So far everything looks fine for now.
Oops - gotta go and take my evening medication before I forget!
There is one scene where the grandmother is leaving the house, but she stops in the room where Steve Martin's character is talking to his wife (played by Mary Steenburgen). She makes a very sweet and wise statement about life being like a rollercoaster, and how she liked it (the ups and downs and the excitement) as opposed to the merry-go-round, which just goes around and around. As the grandmother exits the room and goes out to the car to wait for them, Mary Steenburgen comments on how brilliant she was. Steve Martin peeks out the window and says, "Oh, yeah? Well if she's so brilliant, why is she sitting in our neighbor's car?" It's a very funny moment.
Today I felt like the grandma in Parenthood. Sometimes I feel like I have moments of brilliance, and then I can't figure out where my shoes are. Or I can count backwards from 100 by sevens with no problem, but I have to think hard to remember whether I took my morning medication. It's so silly! I remind myself that it must be simple distraction and nothing to worry about. So far everything looks fine for now.
Oops - gotta go and take my evening medication before I forget!
Wednesday, March 01, 2006
The Most Important Thing
I am blessed to be surrounded by wonderful family members and friends who manage to uplift me with love, cheer, and great insights. One friend shared with me a very profound statement (and I can't remember if it was his own original thought or something he was quoting from someone else):
The most important thing
Is that the most important thing
Is the most important thing
I reflected on this while sitting in our temple last weekend. It is a place where I can ponder the majesty of the Creation and the plan for the ultimate destiny of man, which includes eternal life and exaltation (made possible by our Savior, Jesus Christ). And it occurred to me that THAT is the most important thing. My eternal life and exaltation. It means keeping the commandments and the covenants that I made with God, and having sufficient faith to take full advantage of the Atonement of Jesus Christ. It means loving and serving others, including those dear ones within my family whom I hope to associate with...FOR - EVVVVVV - ER.
Everything else is just a bunch of details.
It reminds me of my wedding. I had a GORGEOUS wedding and reception, thanks to the generosity of my parents. It was a fairy tale celebration of a quality befitting the acquisition of such a fine husband and the culmination of what is sure to be the GREAT LOVE STORY OF ALL TIME (in my very humble opinion, of course). Yet, even within this grand event there were some minor details that went awry. For example, the florist planned to preserve my beautiful bouquet under glass so that I could enjoy it after the wedding as a decoration in my home. I was so excited. But they messed it up so I didn't get to have that. The photographer forgot to do some of the poses we had asked for. The florist put carnations on the reception tables where I had specifically asked for roses. The band played a song that I asked them NOT to sing, and they forgot to do "our" song ("Hello" by Lionel Ritchie). In the days following my honeymoon, I remember these things being a big deal to me. Not enough to spoil the great event, but enough to cause some stress afterward as I thought those sentimental things were supposed to be 100% perfect. Of course, more than seventeen years later...
...the most important thing...
...is that the most important thing...
...is the most important thing.
What really matters is WHO I married, and under what authority we were married, so that our marriage could last through the eternities. And I guess the fact that more than seventeen years later we are still GA-GA in love with each other is also pretty darn important. The rest is just a bunch silly details that don't matter a hill of beans any more, and as I remember those silly details that went wrong, I look back on that earlier stress as just a sign of my immaturity at the time.
I figure in a thousand years, we'll all be dead. We may be sitting around in the afterlife, meeting people and asking: "How long did you live?" "What did you die of?" And people will answer: "100 years"..."16 years"..."40 years"..."68 years"..."35 years"..."86 years"...whatever..."Got run over by a train"..."Choked on a hot dog"..."Weird freaky aneurysm"..."Heart attack"..."Stroke"..."Cancer"...
"Construction accident"...whatever...
We'll ask, "Where did you live?" "Chicago"..."Texas"..."Long Island"...
"England"..."Japan"..."Africa"..."Montreal"..."Salt Lake City"...whatever...
And at the time, all that stuff will just be interesting details that we will ask to get to know each other better. They won't be as important as they seemed right at the very time they happened. What will really continue to be important is HOW each of us lived.
In a thousand years, I want to sit together with my family in the afterlife and reflect back on our lives as interesting but distant memories, just like I would sit today with my husband and reminisce about our wedding day. Maybe we'll laugh and cry together as we remember special times, happy times, and sad times. But the details will have diminished in their impact as we are busy loving each other and rejoicing in our reunion. At that time, a thousand years from now, the only thing that will REALLY matter to us is "the most important thing."
So that's what should really matter to me now.
The most important thing
Is that the most important thing
Is the most important thing
I reflected on this while sitting in our temple last weekend. It is a place where I can ponder the majesty of the Creation and the plan for the ultimate destiny of man, which includes eternal life and exaltation (made possible by our Savior, Jesus Christ). And it occurred to me that THAT is the most important thing. My eternal life and exaltation. It means keeping the commandments and the covenants that I made with God, and having sufficient faith to take full advantage of the Atonement of Jesus Christ. It means loving and serving others, including those dear ones within my family whom I hope to associate with...FOR - EVVVVVV - ER.
Everything else is just a bunch of details.
It reminds me of my wedding. I had a GORGEOUS wedding and reception, thanks to the generosity of my parents. It was a fairy tale celebration of a quality befitting the acquisition of such a fine husband and the culmination of what is sure to be the GREAT LOVE STORY OF ALL TIME (in my very humble opinion, of course). Yet, even within this grand event there were some minor details that went awry. For example, the florist planned to preserve my beautiful bouquet under glass so that I could enjoy it after the wedding as a decoration in my home. I was so excited. But they messed it up so I didn't get to have that. The photographer forgot to do some of the poses we had asked for. The florist put carnations on the reception tables where I had specifically asked for roses. The band played a song that I asked them NOT to sing, and they forgot to do "our" song ("Hello" by Lionel Ritchie). In the days following my honeymoon, I remember these things being a big deal to me. Not enough to spoil the great event, but enough to cause some stress afterward as I thought those sentimental things were supposed to be 100% perfect. Of course, more than seventeen years later...
...the most important thing...
...is that the most important thing...
...is the most important thing.
What really matters is WHO I married, and under what authority we were married, so that our marriage could last through the eternities. And I guess the fact that more than seventeen years later we are still GA-GA in love with each other is also pretty darn important. The rest is just a bunch silly details that don't matter a hill of beans any more, and as I remember those silly details that went wrong, I look back on that earlier stress as just a sign of my immaturity at the time.
I figure in a thousand years, we'll all be dead. We may be sitting around in the afterlife, meeting people and asking: "How long did you live?" "What did you die of?" And people will answer: "100 years"..."16 years"..."40 years"..."68 years"..."35 years"..."86 years"...whatever..."Got run over by a train"..."Choked on a hot dog"..."Weird freaky aneurysm"..."Heart attack"..."Stroke"..."Cancer"...
"Construction accident"...whatever...
We'll ask, "Where did you live?" "Chicago"..."Texas"..."Long Island"...
"England"..."Japan"..."Africa"..."Montreal"..."Salt Lake City"...whatever...
And at the time, all that stuff will just be interesting details that we will ask to get to know each other better. They won't be as important as they seemed right at the very time they happened. What will really continue to be important is HOW each of us lived.
In a thousand years, I want to sit together with my family in the afterlife and reflect back on our lives as interesting but distant memories, just like I would sit today with my husband and reminisce about our wedding day. Maybe we'll laugh and cry together as we remember special times, happy times, and sad times. But the details will have diminished in their impact as we are busy loving each other and rejoicing in our reunion. At that time, a thousand years from now, the only thing that will REALLY matter to us is "the most important thing."
So that's what should really matter to me now.
Krista Oakes: "Cancer Survivor"
First of all, thanks to the many who have left comments or let me know by phone or email that your prayers would be with me as I did my MRI. I did go into that scan feeling very calm because I was being carried and sustained by those prayers. I was NOT told what the scans looked like yet (maybe I will know in the next day or so), but I feel okay and not at all nervous like I thought I would be.
Meanwhile, I learned something kind of cool: I am a "cancer survivor". I was approached about an upcoming American Cancer Society fundraiser in my area, where they are doing a Relay For Life. Part of the event includes a memorial for those who have lost their battle with cancer, and a tribute to "cancer survivors". I was asked to fill out information so they can recognize me as a cancer survivor. It shocked me, because I always thought the term referred to those who were cured. But the American Cancer Society person who talked to me explained that "You are a cancer survivor from the minute you are diagnosed." So basically once you are told you have cancer, and as long as you are not dead yet, you are a "cancer survivor". So, woo hoo - I am a cancer survivor of about two and a half months! Let's hope I stay one for a lot longer!
The Destiny's Child song, "Survivor" kept going through my head, so I had to take the lyrics and change them a little, so I can sing it to my cancer:
Now that you are in my life, I'm so much better
You thought that I'd be weak with ya, but I'm stronger
You thought that I'd be broke with ya, but I'm richer
You thought that I'd be sad with ya, but I laugh harder
You thought I wouldn't grow with ya, now I'm wiser
You thought that I'd be helpless with ya, but I'm smarter
You thought that I'd be stressed with ya, but I'm chillin'
You thought I wouldn't reach with ya, I'll reach a million.
I'm a survivor, I'm not gonna give up
I'm not gon' stop, I'm gonna work harder
I'm a survivor, I'm gonna make it
I will survive, Keep on survivin'
Thought I couldn't breathe with you, I'm inhalin'
You thought I couldn't see with you, perfect vision,
You thought I couldn't last with ya, but I'm lastin'
You thought that I would die with ya, but I'm livin'
Thought that I would fail with ya, but I'm on top
Though it would be over by now, but it won't stop,
You thought that I would self-destruct, but I'm still here,
Even in my years to come, I'm still gon' be here.
I'm wishin' you'll be gone,
Pray that I'll keep hanging on,
With much success, no stress, and lots of happiness,
(I'm gonna have that)
I'm gonna blast you with radiation,
(It's better than you )
I'm gonna poison you with medication,
(It's better than you)
I'm not gonna hate what you've done to me,
(I'm better than that)
I'm not gonna compromise my Christianity,
(I'm better than that)
I'm gonna blog about you on the Internet
And keep the faith, 'cause my momma taught me how to do that.
After all of the darkness and sadness
Still comes happiness,
If I surround myself with positive things
I'll gain prosperity.
I'm a survivor...(etc...)
Meanwhile, I learned something kind of cool: I am a "cancer survivor". I was approached about an upcoming American Cancer Society fundraiser in my area, where they are doing a Relay For Life. Part of the event includes a memorial for those who have lost their battle with cancer, and a tribute to "cancer survivors". I was asked to fill out information so they can recognize me as a cancer survivor. It shocked me, because I always thought the term referred to those who were cured. But the American Cancer Society person who talked to me explained that "You are a cancer survivor from the minute you are diagnosed." So basically once you are told you have cancer, and as long as you are not dead yet, you are a "cancer survivor". So, woo hoo - I am a cancer survivor of about two and a half months! Let's hope I stay one for a lot longer!
The Destiny's Child song, "Survivor" kept going through my head, so I had to take the lyrics and change them a little, so I can sing it to my cancer:
Now that you are in my life, I'm so much better
You thought that I'd be weak with ya, but I'm stronger
You thought that I'd be broke with ya, but I'm richer
You thought that I'd be sad with ya, but I laugh harder
You thought I wouldn't grow with ya, now I'm wiser
You thought that I'd be helpless with ya, but I'm smarter
You thought that I'd be stressed with ya, but I'm chillin'
You thought I wouldn't reach with ya, I'll reach a million.
I'm a survivor, I'm not gonna give up
I'm not gon' stop, I'm gonna work harder
I'm a survivor, I'm gonna make it
I will survive, Keep on survivin'
Thought I couldn't breathe with you, I'm inhalin'
You thought I couldn't see with you, perfect vision,
You thought I couldn't last with ya, but I'm lastin'
You thought that I would die with ya, but I'm livin'
Thought that I would fail with ya, but I'm on top
Though it would be over by now, but it won't stop,
You thought that I would self-destruct, but I'm still here,
Even in my years to come, I'm still gon' be here.
I'm wishin' you'll be gone,
Pray that I'll keep hanging on,
With much success, no stress, and lots of happiness,
(I'm gonna have that)
I'm gonna blast you with radiation,
(It's better than you )
I'm gonna poison you with medication,
(It's better than you)
I'm not gonna hate what you've done to me,
(I'm better than that)
I'm not gonna compromise my Christianity,
(I'm better than that)
I'm gonna blog about you on the Internet
And keep the faith, 'cause my momma taught me how to do that.
After all of the darkness and sadness
Still comes happiness,
If I surround myself with positive things
I'll gain prosperity.
I'm a survivor...(etc...)
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