(Well, sort of.)
My daughter's kindergarten class has been doing the "head, shoulders, knees and toes" song this week, and she likes to come home and show it off to us.
The song was going through (what's left of) my mind during the three-hour spontaneous MRI today. Despite being "totally booked," the imaging center spoke with my doctor and managed to squeeze me in immediately for a marathon set of scans: brain, neck, upper spine, and lower spine. (So I was singing, "Head, neck, upper back, lower back")
At first I protested the brain scan, referring back to my August scan, which was good enough to earn me a pass until February. I explained that without a perfusion study and prior history, they may be confused by all the mess they will see in my head (like my resection cavity, fried mastoid bone, and a whole lot of scar tissue). The best I could do was give them my neuro-oncologist's phone number in case they saw anything that freaked them out.
This scenario gave me hope that perhaps I was merely dealing with a hyper radiologist who only noticed my glioblastoma history when he was writing his report after Wednesday's MRI, and who wanted to err on the side of caution when he couldn't tell the difference between a tumor and a transitional vertebrae.
(If that's not the case, he may have saved my life.)
So off into the tube I went, carrying thoughts of prayers being offered on my behalf (thank you!) and reliving precious memories with my family, to help take (what's left of) my mind off the pain as I lay flat on my back for three hours.
And between studies, as they would pull me out of tube to readjust frames or inject contrast media, I would always re-enter the tube with gratitude that I fit all the way in there quite easily!
I have no idea what this will reveal. But I remember what I told my son as he accompanied me for my MRI in August: "We will either learn that everything looks great--and that's happened a lot lately--or we will learn that we don't have enough information and need to do more testing, or we will learn that there is something new to take care of -- and it's good to know if we need to take care of something. "
Until we know, I feel like a teenage girl on a Friday night, sitting by the phone and hoping it will ring soon.
However, I know that this situation is in the loving hands of my loving Heavenly Father, and I trust Him with everything. I only pray that His will be done, and that I will know what to do. In return, I have peace in knowing that all will ultimately be well, even if this latest development gets ugly.
I still shed a tear or two this morning, as this is a time for emotions to rise to the surface. But these were not tears of frustration or anger or fear. Just a wistful feeling for my family, who must endure this with me. And sentiment about having to say goodbye to karate and clog dancing and bike riding and running a 5K...at least for now. Hopefully not for long.
My prayers to avoid complacency have definitely been answered!
Friday, September 10, 2010
One more MRI...one more tumor?
The radiologist called my orthopedic surgeon to say that there is "something" on my spine, and he is suspicious of tumor recurrence. Stay tuned for another MRI on Monday...
Wednesday, September 08, 2010
Feet First
I prayed that I might avoid complacency, now that I have been excused from brain MRI scans until February.
The answer to my prayer came in the form of unexplained low back pain that got increasingly worse. I haven't slept much in the last several weeks, because of the pain. And yes, I have a great neurostimulator and a Sleep Number bed and plenty of Advil and I do a lot of walking. I can't decide what was worse -- dealing with the pain and sleepless nights, or wondering what could possibly have caused this to happen.
My gynecologist and gastroenterologist were each able to rule out anything that would land in their turf. The gastroenterologist ordered an MRI of my pelvis and sacrum and suggested that I take these to my orthopedic surgeon.
The orthopedic surgeon glanced at the radiologist's report but did not look at the MRI images or seem to have interest in them. He immediately diagnosed sciatica after a brief physical exam, and prescribed a corticosteroid, with plans to explore further if the prescription didn't help.
After I picked up the prescription and reviewed the accompanying information, I noticed many warnings about use in patients taking seizure medication. So I called the orthopedic surgeon's office, and they decided that I shouldn't take it. Instead, the doctor decided to order an MRI of the lumbar section of my spine. I had that done today.
Yes, two MRI's in one week, and both had me going in the tube feet first this time! My head stayed outside the tube, which was kind of a weird new experience.
I'm not sure what he is looking for, but two things came to (what's left of) my mind. One was a reminder that I was diagnosed about twenty years ago with a transitional vertebrae that would probably cause a problem with my back in about twenty years. The other was a reminder that brain tumors generally stay within the brain...but can also spread into other parts of the central nervous system (like the spine). I think they are both plausible causes of sciatica pain, although the former is (hopefully) more likely than the latter. Either way, I'm hoping the MRI will provide the answer and a road map to relief.
Unfortunately, I was told that my orthopedic surgeon only reads incoming radiologist reports on Tuesdays and Fridays, so I have a while to stand around (sitting is too painful) and wait for the verdict. Whatever it is, and wherever we go from here, I only pray will reflect God's will. I can always trust in that. If it's an easily correctable problem, that would be another reason to celebrate. If it's a major problem, then we found something that needs major action, and I am ready to jump into that...feet first.
The answer to my prayer came in the form of unexplained low back pain that got increasingly worse. I haven't slept much in the last several weeks, because of the pain. And yes, I have a great neurostimulator and a Sleep Number bed and plenty of Advil and I do a lot of walking. I can't decide what was worse -- dealing with the pain and sleepless nights, or wondering what could possibly have caused this to happen.
My gynecologist and gastroenterologist were each able to rule out anything that would land in their turf. The gastroenterologist ordered an MRI of my pelvis and sacrum and suggested that I take these to my orthopedic surgeon.
The orthopedic surgeon glanced at the radiologist's report but did not look at the MRI images or seem to have interest in them. He immediately diagnosed sciatica after a brief physical exam, and prescribed a corticosteroid, with plans to explore further if the prescription didn't help.
After I picked up the prescription and reviewed the accompanying information, I noticed many warnings about use in patients taking seizure medication. So I called the orthopedic surgeon's office, and they decided that I shouldn't take it. Instead, the doctor decided to order an MRI of the lumbar section of my spine. I had that done today.
Yes, two MRI's in one week, and both had me going in the tube feet first this time! My head stayed outside the tube, which was kind of a weird new experience.
I'm not sure what he is looking for, but two things came to (what's left of) my mind. One was a reminder that I was diagnosed about twenty years ago with a transitional vertebrae that would probably cause a problem with my back in about twenty years. The other was a reminder that brain tumors generally stay within the brain...but can also spread into other parts of the central nervous system (like the spine). I think they are both plausible causes of sciatica pain, although the former is (hopefully) more likely than the latter. Either way, I'm hoping the MRI will provide the answer and a road map to relief.
Unfortunately, I was told that my orthopedic surgeon only reads incoming radiologist reports on Tuesdays and Fridays, so I have a while to stand around (sitting is too painful) and wait for the verdict. Whatever it is, and wherever we go from here, I only pray will reflect God's will. I can always trust in that. If it's an easily correctable problem, that would be another reason to celebrate. If it's a major problem, then we found something that needs major action, and I am ready to jump into that...feet first.
Wednesday, August 18, 2010
I'm Walking!
Dallas-Ft. Worth Brain Tumor Walk:
As part of my HIGH FIVE year, I am forming a team to raise at least $5,555 for the National Brain Tumor Society. They have done good things for me and for my doctor, and we are both setting up teams this year!
My team's name is "Krista's High Five," and we are looking for team members. If you can be in Ft. Worth on November 6, we'd love to have you there with us. If you'd rather support us from afar (or from a couch) you can be a "virtual" team member. Or you can make a one-time donation to the team or any individual member.
My kids are so excited about this, they set up an impromptu drink stand in our front yard this evening to raise money for our team! Many of our good neighbors stopped by and couldn't resist the charming little fundraisers with their cooler full of ice-cold bottled water and soda!
Please consider joining our team or making a donation by using the link at the top of this post. Once again, the support of my family and friends will accomplish great things!
As part of my HIGH FIVE year, I am forming a team to raise at least $5,555 for the National Brain Tumor Society. They have done good things for me and for my doctor, and we are both setting up teams this year!
My team's name is "Krista's High Five," and we are looking for team members. If you can be in Ft. Worth on November 6, we'd love to have you there with us. If you'd rather support us from afar (or from a couch) you can be a "virtual" team member. Or you can make a one-time donation to the team or any individual member.
My kids are so excited about this, they set up an impromptu drink stand in our front yard this evening to raise money for our team! Many of our good neighbors stopped by and couldn't resist the charming little fundraisers with their cooler full of ice-cold bottled water and soda!
Please consider joining our team or making a donation by using the link at the top of this post. Once again, the support of my family and friends will accomplish great things!
Thursday, August 12, 2010
Another Twelfth!
Fifty-six months of survival! Only four more until I reach the five-year mark! (And then I start working toward my next milestone.)
Last year in school my son learned about "possible/impossible," "plausible/implausible," and "certain." During our many car-versations during Tuesday's travels around the medical community, we were discussing how good it has been for us. He would interject these words into the conversation:
"When you were first diagnosed it seemed IMPLAUSIBLE that you would still be around today." ("But Jake, it wasn't IMPOSSIBLE, as I am now demonstrating!")
"They felt CERTAIN that you could not survive five years." ("Maybe, based on statistics, but it is POSSIBLE that I could...and if it is God's will that I should, it's CERTAIN that I would!")
Last year in school my son learned about "possible/impossible," "plausible/implausible," and "certain." During our many car-versations during Tuesday's travels around the medical community, we were discussing how good it has been for us. He would interject these words into the conversation:
"When you were first diagnosed it seemed IMPLAUSIBLE that you would still be around today." ("But Jake, it wasn't IMPOSSIBLE, as I am now demonstrating!")
"They felt CERTAIN that you could not survive five years." ("Maybe, based on statistics, but it is POSSIBLE that I could...and if it is God's will that I should, it's CERTAIN that I would!")
Tuesday, August 10, 2010
Today I was given six months
SIX MONTHS until my next MRI! Today's was the best scan yet. The perfusion report was so good, my doctor felt comfortable letting me go longer than ever before between scans! Considering that this is a cancer aggressive enough to double in size in three weeks, six months is an amazing interval!
My son accompanied me today. I considered him my lucky charm, and he beamed at the idea.
My elation over this news, combined with my typical sick humor, tempted me to tell my family and friends that "the doctor gave me six months to live..." ("...until I have to come back for my next MRI!") I considered how nice it will be to come back next February, after I have passed the five-year survival mark, and how nice to finish out this year without having to think about MRI results again.
And then the folly of my thinking caught up with me. This is certainly good news, but it is not a guarantee of life for six months. (None of us has that.) The MRI doesn't decide whether I live or die; it just shows us whether there is anything interesting going on in (what's left of) my mind. Life is still precious and should never be taken for granted. If I really do have a reprieve for the next six months, I feel a greater sense of responsibility for what I choose to do with it.
Today our family chose to spend it celebrating and thanking our God -- and the many people who cushioned me with their prayers to Him on my behalf.
My son accompanied me today. I considered him my lucky charm, and he beamed at the idea.
My elation over this news, combined with my typical sick humor, tempted me to tell my family and friends that "the doctor gave me six months to live..." ("...until I have to come back for my next MRI!") I considered how nice it will be to come back next February, after I have passed the five-year survival mark, and how nice to finish out this year without having to think about MRI results again.
And then the folly of my thinking caught up with me. This is certainly good news, but it is not a guarantee of life for six months. (None of us has that.) The MRI doesn't decide whether I live or die; it just shows us whether there is anything interesting going on in (what's left of) my mind. Life is still precious and should never be taken for granted. If I really do have a reprieve for the next six months, I feel a greater sense of responsibility for what I choose to do with it.
Today our family chose to spend it celebrating and thanking our God -- and the many people who cushioned me with their prayers to Him on my behalf.
Sunday, August 01, 2010
TYMPANOPLASTY II: RADIATION'S REVENGE
On Thursday I had a revision to my original tympanoplasty, which means a lot of things:
1. Lots of bedrest.
2. No bending down to pick up anything.
3. No lifting, vacuuming, or climbing stairs.
4. No driving.
5. No loading/unloading the dishwasher.
6. I must subject myself to endless pampering by my well-trained family.
(I know -- poor me!!)
All went well with the procedure, and my surgeon is hopeful that this time my new eardrum will have a better chance of grafting more successfully. He described a lot of what had to be done to overcome the amount of radiation damage inside my ear. (I'm glad I was asleep!)
Most of all, I relish once again the opportunity to deal with long-term side effects of treatment. As I talked with the doctors and nurses at the hospital, I often had to confirm that, yes, my craniotomy was in 2005. Yes, my radiation treatment was in early 2006. Yes, it was for glioblastoma. Yes, I'm aware that I am very blessed!
1. Lots of bedrest.
2. No bending down to pick up anything.
3. No lifting, vacuuming, or climbing stairs.
4. No driving.
5. No loading/unloading the dishwasher.
6. I must subject myself to endless pampering by my well-trained family.
(I know -- poor me!!)
All went well with the procedure, and my surgeon is hopeful that this time my new eardrum will have a better chance of grafting more successfully. He described a lot of what had to be done to overcome the amount of radiation damage inside my ear. (I'm glad I was asleep!)
Most of all, I relish once again the opportunity to deal with long-term side effects of treatment. As I talked with the doctors and nurses at the hospital, I often had to confirm that, yes, my craniotomy was in 2005. Yes, my radiation treatment was in early 2006. Yes, it was for glioblastoma. Yes, I'm aware that I am very blessed!
Saturday, July 24, 2010
...and FORTY-THREE!
Forty-three years of life!
(I shouldn't be presumptious, because I am posting this with a little more than an hour left before my actual birthdate. But it's close enough.)
My husband and my kids began spoiling me many days ago, and tonight we had a celebration dinner with my brother Mike and his family, followed by ice cream cake at home.
It occurred to me just a few minutes ago that more than one-tenth of my life has been spent as a cancer survivor! Time flies when you're having fun.
One-tenth...and growing!
(I shouldn't be presumptious, because I am posting this with a little more than an hour left before my actual birthdate. But it's close enough.)
My husband and my kids began spoiling me many days ago, and tonight we had a celebration dinner with my brother Mike and his family, followed by ice cream cake at home.
It occurred to me just a few minutes ago that more than one-tenth of my life has been spent as a cancer survivor! Time flies when you're having fun.
One-tenth...and growing!
Wednesday, July 14, 2010
...and FIFTY-FIVE and FIVE and TWELVE!
Fifty-five months since diagnosis. (That would be four years and seven months.)
Five more months until I finish my fifth year of survival!
I hit those milestones on the 12th.
Many of you know that my lucky number is thirteen, because our son was born in the thirteenth year of our marriage, in the thirteenth hour of the thirteenth day of March.
I'm really not into numerology, but I started associating the number twelve with unlucky things. Cancer diagnosis on December 12 (12/12). Tumor progression detected on October 12.
But as with everything in life, it's all in the way we look at things. I also had neurosurgery on 12/12, and emerged high-functioning that evening. The October 12 tumor progression led to the use of Avastin, which worked well enough to keep me stable ever since. And it finally occurred to me (after all these months) that I keep looking forward to another "12" on the calendar. Another month of survival. (In fact, so many now, that it seems silly to count survival in months!)
It's pretty darn lucky!
Five more months until I finish my fifth year of survival!
I hit those milestones on the 12th.
Many of you know that my lucky number is thirteen, because our son was born in the thirteenth year of our marriage, in the thirteenth hour of the thirteenth day of March.
I'm really not into numerology, but I started associating the number twelve with unlucky things. Cancer diagnosis on December 12 (12/12). Tumor progression detected on October 12.
But as with everything in life, it's all in the way we look at things. I also had neurosurgery on 12/12, and emerged high-functioning that evening. The October 12 tumor progression led to the use of Avastin, which worked well enough to keep me stable ever since. And it finally occurred to me (after all these months) that I keep looking forward to another "12" on the calendar. Another month of survival. (In fact, so many now, that it seems silly to count survival in months!)
It's pretty darn lucky!
Tuesday, June 29, 2010
...and FIVE and SIX!
I remember celebrating my son's fifth birthday, just three months after being diagnosed with cancer, and being grateful for the opportunity to be there. My daughter had not yet celebrated her first birthday, and so any ideas about celebrating her fifth birthday seemed like the stuff of wishful dreams.
More than four years --and many miracles-- later, I found myself celebrating Emma's big five this month. We had a "Princess and the Frog" themed party, and I made my first attempt at a doll cake:
(Now try and tell me this wouldn't obviate the next neuro test!)
Meanwhile, I was also celebrating #6. That's my son's baseball jersey number this year. I watched him earn a second game ball as their team came back from their losing streak to handily win the next several games. During the playoffs I had another chance to sing the national anthem. His team ended up finishing the season in fourth place -- which was good, considering that they were in ninth place (out of nine teams) during the first half of the season. He learned to lose with grace and to win with humility...and to enjoy the chance to play, no matter what the outcome.
This evening we celebrated the end of the season with a team party. We went to a park and played a hilarious scrimmage game of team players vs. moms and younger siblings. They used wiffle balls and bats, making it brain-friendly. I managed to hit the ball each time at bat -- which should also obviate the next neuro test. After the game, we went crazy with cupcakes and water balloons. It was one of those "had-to-be-there-to-appreciate" moments, and became yet another treasured memory to save in (what's left of) my mind.
Saturday, June 12, 2010
Living didn't count
The title punctuates the need for punctuation! What I meant to say was:
Living. Didn't count.
Actually, what I meant to say was that I was so caught up in living this great day that I nearly forgot that it was the 12th! It took a while today before I realized that --wow-- I can count four and a half years (54 months!) of cancer survival behind me.
We started our day at a very special ballpark that gave my son's team a little taste of "big guy baseball." Each team in the league gets to play one game on this field, complete with announcers and a large lighted scoreboard and great seating for the fans. Technical difficulties prevented the playing of a recorded version of the national anthem, so I asked if they wanted a live version. They handed me a microphone, and now I can say that I sang the national anthem at a baseball game.
My son's team was missing several players and they faced a formidable team -- and they got slaughtered (11 to 1). But they played with all their hearts and managed to pull off some great plays and enjoy the experience despite the disappointing outcome. (It was a good life lesson for all of us.) Jacob had grandparents and aunts and uncles and cousins to cheer him on, and after the game was over we all saw his coach award him the game ball.
After a celebration pizza lunch we went across town to watch my niece play the violin at a Music Fest recital. When we got home we were reminded that we had ordered some fajitas for a fundraising activity, and they were being delivered just in time for us to feed the new missionaries in our area. We had a great visit with them, and later reconvened as a family to celebrate my sister-in-law's birthday. While together we also phoned my youngest brother, who is celebrating his birthday today far away.
It was a busy day, but one filled with family and friends and new good memories. The best stuff of life!
Living. Didn't count.
Actually, what I meant to say was that I was so caught up in living this great day that I nearly forgot that it was the 12th! It took a while today before I realized that --wow-- I can count four and a half years (54 months!) of cancer survival behind me.
We started our day at a very special ballpark that gave my son's team a little taste of "big guy baseball." Each team in the league gets to play one game on this field, complete with announcers and a large lighted scoreboard and great seating for the fans. Technical difficulties prevented the playing of a recorded version of the national anthem, so I asked if they wanted a live version. They handed me a microphone, and now I can say that I sang the national anthem at a baseball game.
My son's team was missing several players and they faced a formidable team -- and they got slaughtered (11 to 1). But they played with all their hearts and managed to pull off some great plays and enjoy the experience despite the disappointing outcome. (It was a good life lesson for all of us.) Jacob had grandparents and aunts and uncles and cousins to cheer him on, and after the game was over we all saw his coach award him the game ball.
After a celebration pizza lunch we went across town to watch my niece play the violin at a Music Fest recital. When we got home we were reminded that we had ordered some fajitas for a fundraising activity, and they were being delivered just in time for us to feed the new missionaries in our area. We had a great visit with them, and later reconvened as a family to celebrate my sister-in-law's birthday. While together we also phoned my youngest brother, who is celebrating his birthday today far away.
It was a busy day, but one filled with family and friends and new good memories. The best stuff of life!
Tuesday, May 18, 2010
Still crazy after all these years!
That song was going through my head yesterday, as my husband and I both marked the 27th anniversary of our first kiss. We're still crazy in love, and I still look forward to those goodnight smooches and good morning smooches and goodbye smooches and hello smooches and whenever smooches...
Today the song went through my head after (barely) hearing my ear surgeon declare that my six-month-new eardrum has fallen victim to the ongoing effects of radiation treatment. It healed nicely at first, but has since opened up and now we have to figure out what to do next.
"Tell me again -- when did you have radiation treatment?"
"A little over four years ago." I think I puffed out my chest with a little pride when I said that. ("Yes, sir, that was for a glioblastoma.")
I remember a discussion with my brother, who was in his dermatology residency while I was undergoing radiation treatment. I asked him about the risks of skin cancer with so much radiation exposure to my scalp. He replied that he hoped to see me develop skin cancer from my radiation treatment, because it would take about twenty years or so for that to happen! (As Forrest Gump would say, I hope I don't let him down!)
I'm one-fifth of the way there. Meanwhile, I have a new reminder that after all these years, I am still alive to see more crazy long-term effects of treatment. Surely the tumor got it worse, I have to tell myself. (HA!)
Until we figure out what to do next, I can go back to convenient hearing. I have already mastered holding the phone to my left ear, and I'm grateful for good vision, because I rely on closed captioning when I watch television or movies on DVD. I also have a continued excuse to avoid being seen in a swimsuit!
Today the song went through my head after (barely) hearing my ear surgeon declare that my six-month-new eardrum has fallen victim to the ongoing effects of radiation treatment. It healed nicely at first, but has since opened up and now we have to figure out what to do next.
"Tell me again -- when did you have radiation treatment?"
"A little over four years ago." I think I puffed out my chest with a little pride when I said that. ("Yes, sir, that was for a glioblastoma.")
I remember a discussion with my brother, who was in his dermatology residency while I was undergoing radiation treatment. I asked him about the risks of skin cancer with so much radiation exposure to my scalp. He replied that he hoped to see me develop skin cancer from my radiation treatment, because it would take about twenty years or so for that to happen! (As Forrest Gump would say, I hope I don't let him down!)
I'm one-fifth of the way there. Meanwhile, I have a new reminder that after all these years, I am still alive to see more crazy long-term effects of treatment. Surely the tumor got it worse, I have to tell myself. (HA!)
Until we figure out what to do next, I can go back to convenient hearing. I have already mastered holding the phone to my left ear, and I'm grateful for good vision, because I rely on closed captioning when I watch television or movies on DVD. I also have a continued excuse to avoid being seen in a swimsuit!
Sunday, May 16, 2010
Twelve and four!
No, it's not our favorite baseball team's losing streak. Another twelve has passed on the calendar...along with four more days! Fifty-three months (and four days) since the diagnosis that changed my life, and all is well!
As always, I was blessed to be able to do more than maintain a pulse. I was able to cheer my son in three more baseball games. I was able to watch my son give a talk, and my daughter give the scripture and prayer in Primary at church. I was able to celebrate one niece's eleventh birthday, another niece's third birthday, my in-law's fiftieth wedding anniversary, and one more Mother's day. I was able to give encouragement to others in person and via email, phone, and (albeit briefly) even television! I was able to sing again, laugh again, and write again. And the list goes on!
Most importantly, I have been able to testify of the goodness of God and the love that He has for all of His children.
As always, I was blessed to be able to do more than maintain a pulse. I was able to cheer my son in three more baseball games. I was able to watch my son give a talk, and my daughter give the scripture and prayer in Primary at church. I was able to celebrate one niece's eleventh birthday, another niece's third birthday, my in-law's fiftieth wedding anniversary, and one more Mother's day. I was able to give encouragement to others in person and via email, phone, and (albeit briefly) even television! I was able to sing again, laugh again, and write again. And the list goes on!
Most importantly, I have been able to testify of the goodness of God and the love that He has for all of His children.
Monday, May 10, 2010
Fifteen Seconds of Fame
That's right -- I now have a television credit to my name!
Genentech, the maker of Avastin, has asked me if I would be willing to share my story of brain cancer survival. Of course, I said "YES!" If you are reading this blog you know that I'm hardly shy about this situation, and I am hopeful that this will give me the opportunity to give hope to others.
Last week was my first opportunity to share my story on the local news. The timing couldn't have been more perfect. Mother's Day was approaching, and being a mom to my children is my primary motivation to keep breathing. Last week was also the one-year anniversary of Avastin being approved by the FDA for use in brain tumors. And May is National Brain Tumor Awareness month --although (giggle, giggle) I was ironically unaware of this!
I had also prayed for help to get my house in order.
On Tuesday afternoon I learned that someone from our local NBC station would be coming by around 1:00 on Wednesday to conduct the interview. (Be careful what you pray for!) I sprang into action to make myself and my home "camera ready." Once again, my angel friends at church started offering to come and help. (How do these women stay on the ground?) I graciously refused, thinking I would burn more calories doing the work myself. (I also got assurance that the cameras would not go too deep into the house!)
We were ready on Wednesday. My son was even kind enough to be miserable all night with allergies, and stayed home from school so he could conveniently be here with my daughter and me for the interview. (My husband had meetings to attend, and was unable to be present.) By 12:50 I was satisfied with the way the house looked, I had fed the kids (outside) and dressed them in adorable outfits, and it finally occurred to me that I should choose my own adorable outfit to wear. I got dressed, put my lipstick on, and was just realizing that my shirt clashed with my living room colors when the doorbell rang.
Steve The Photojournalist spent over an hour in our home. He first interviewed me in the living room while the children were in the next room with a movie and promises of milkshakes if they stayed quiet. I told my story and answered many questions about dealing with the diagnosis and going through treatment. I answered questions about faith and prayer. I answered questions about the things I have been able to do since my diagnosis. (That was a long list.) It seemed like we talked forever. I even talked about the years of longing to be a mother before we adopted our children, and then receiving this cancer diagnosis, which created a new longing to remain here and be a mother to my children. And on and on we went.
Then we brought in my kiddos, and they were perfectly charming. We moved into the family room, where Emma read to us on the couch. Then Jacob read the poem that I wrote about them ("Jake the Puppy and Emma the Cat," which has been accepted for publication). Jacob and I even played a little Scrabble together. Steve also zoomed in on some family pictures and my karate black belt certificate. We ended with me and the kids singing our family fight song. It was a lot of fun! Steve The Photojournalist graciously said that he really enjoyed doing this story. I sent him on his way with a copy of my book and the URL to my blog. Genentech also provided the station with background information about Avastin. All of this went to a separate person, who wrote and "voiced" the story on the air. There was a lot of material to digest and make into a story. I wondered what angle they would take.
The segment aired on the 10:00 Thursday night news. We set the DVR so the kids could watch it in the morning. And then we waited, until finally we saw this:
http://www.nbcdfw.com/news/health/Targeted_Therapy_Adds_Years_to_Plano_Mom_s_Life_Dallas-Fort_Worth.html
Yep -- that was it! All that filming was condensed down to just a few seconds. All my blabbing was reduced to a sentence. (Even Steve The Photojournalist was expecting the final product to be longer.) But it was a good experience, and I hope that this brief moment will somehow be of use to someone.
Naturally, I saw a life analogy as I considered the whirlwind of activity leading up to the interview. Think of how busy and agitated we can make ourselves over things that won't matter in the end. Ultimately, no matter how long we get to live, we'll be surprised at how fast it's over. So hopefully when all is said and done, we'll have chosen the right things to focus our story on!
Genentech, the maker of Avastin, has asked me if I would be willing to share my story of brain cancer survival. Of course, I said "YES!" If you are reading this blog you know that I'm hardly shy about this situation, and I am hopeful that this will give me the opportunity to give hope to others.
Last week was my first opportunity to share my story on the local news. The timing couldn't have been more perfect. Mother's Day was approaching, and being a mom to my children is my primary motivation to keep breathing. Last week was also the one-year anniversary of Avastin being approved by the FDA for use in brain tumors. And May is National Brain Tumor Awareness month --although (giggle, giggle) I was ironically unaware of this!
I had also prayed for help to get my house in order.
On Tuesday afternoon I learned that someone from our local NBC station would be coming by around 1:00 on Wednesday to conduct the interview. (Be careful what you pray for!) I sprang into action to make myself and my home "camera ready." Once again, my angel friends at church started offering to come and help. (How do these women stay on the ground?) I graciously refused, thinking I would burn more calories doing the work myself. (I also got assurance that the cameras would not go too deep into the house!)
We were ready on Wednesday. My son was even kind enough to be miserable all night with allergies, and stayed home from school so he could conveniently be here with my daughter and me for the interview. (My husband had meetings to attend, and was unable to be present.) By 12:50 I was satisfied with the way the house looked, I had fed the kids (outside) and dressed them in adorable outfits, and it finally occurred to me that I should choose my own adorable outfit to wear. I got dressed, put my lipstick on, and was just realizing that my shirt clashed with my living room colors when the doorbell rang.
Steve The Photojournalist spent over an hour in our home. He first interviewed me in the living room while the children were in the next room with a movie and promises of milkshakes if they stayed quiet. I told my story and answered many questions about dealing with the diagnosis and going through treatment. I answered questions about faith and prayer. I answered questions about the things I have been able to do since my diagnosis. (That was a long list.) It seemed like we talked forever. I even talked about the years of longing to be a mother before we adopted our children, and then receiving this cancer diagnosis, which created a new longing to remain here and be a mother to my children. And on and on we went.
Then we brought in my kiddos, and they were perfectly charming. We moved into the family room, where Emma read to us on the couch. Then Jacob read the poem that I wrote about them ("Jake the Puppy and Emma the Cat," which has been accepted for publication). Jacob and I even played a little Scrabble together. Steve also zoomed in on some family pictures and my karate black belt certificate. We ended with me and the kids singing our family fight song. It was a lot of fun! Steve The Photojournalist graciously said that he really enjoyed doing this story. I sent him on his way with a copy of my book and the URL to my blog. Genentech also provided the station with background information about Avastin. All of this went to a separate person, who wrote and "voiced" the story on the air. There was a lot of material to digest and make into a story. I wondered what angle they would take.
The segment aired on the 10:00 Thursday night news. We set the DVR so the kids could watch it in the morning. And then we waited, until finally we saw this:
http://www.nbcdfw.com/news/health/Targeted_Therapy_Adds_Years_to_Plano_Mom_s_Life_Dallas-Fort_Worth.html
Yep -- that was it! All that filming was condensed down to just a few seconds. All my blabbing was reduced to a sentence. (Even Steve The Photojournalist was expecting the final product to be longer.) But it was a good experience, and I hope that this brief moment will somehow be of use to someone.
Naturally, I saw a life analogy as I considered the whirlwind of activity leading up to the interview. Think of how busy and agitated we can make ourselves over things that won't matter in the end. Ultimately, no matter how long we get to live, we'll be surprised at how fast it's over. So hopefully when all is said and done, we'll have chosen the right things to focus our story on!
Sunday, May 02, 2010
Don't Cancel When it Looks Like Rain
I have to give credit to my friend Lauralea for sparking this blogworthy thought...
As this weekend approached, our area received weather forecasts predicting severe thunderstorms. A local elementary school cancelled their spring carnival (wasting hours of volunteer effort) in anticipation of the storms. My son's baseball league kept us in suspense about Saturday's opening day games. Several friends had a day trip planned on Friday, but opted out because of the weather forecast.
For several days the sky was cloudy and threatening, but we never saw a storm. I think I briefly saw some light drizzle. That was it! We enjoyed perfect weather as we watched our son play his first game of the season.
Some friends and I were commenting about all of this when Lauralea explained to us that she learned not to cancel things just because it looks like rain. She told us about a time when the young women at our church had to travel for an activity, and the weather got really nasty. However, instead of cancelling the activity they pressed forward, enduring the torrential rains that often seemed scary. Everyone was safe, and they ended up having a very good experience together.
Her story reminded me of last summer, when my son attended scout day camp. One day the camp closed early due to severe weather, and while we all made it home safely, the drive home was indeed an adventure. Camp proceeded again on the next day, but at the first rumble of thunder they immediately shut down and sent everyone home in a panic. This time, as we drove home we heard a second rumble of thunder. And then it was over. I don't remember seeing any rain that day. This was the last day of camp, so my son missed some eagerly anticipated activities.
Meanwhile, our church youth group had planned a handcart trek activity for months, and despite severe weather on the evening before they were to leave, they still got up early in the morning and hiked toward Oklahoma. At some point during the trip the severe weather returned, but miraculously their little camp was spared while the storms raged nearby.
Practically speaking, it's always better to be safe than sorry -- especially when it comes to North Texas weather in the spring. But as always, I saw a life lesson in these experiences. Metaphorically speaking, when life gets cloudy (or even stormy) should we cancel? Of course not! This is the time to press forward and endure whatever we have to face, so that we don't miss valuable opportunities. It's not as dangerous as driving through a Texas storm. We can navigate the storms of life safely, especially as we put our trust in the Lord, who has power to calm any tempest and protect us from harm.
This also reminded me of a line from a hymn that another friend (thanks, Marnie!) shared with me long ago:
As this weekend approached, our area received weather forecasts predicting severe thunderstorms. A local elementary school cancelled their spring carnival (wasting hours of volunteer effort) in anticipation of the storms. My son's baseball league kept us in suspense about Saturday's opening day games. Several friends had a day trip planned on Friday, but opted out because of the weather forecast.
For several days the sky was cloudy and threatening, but we never saw a storm. I think I briefly saw some light drizzle. That was it! We enjoyed perfect weather as we watched our son play his first game of the season.
Some friends and I were commenting about all of this when Lauralea explained to us that she learned not to cancel things just because it looks like rain. She told us about a time when the young women at our church had to travel for an activity, and the weather got really nasty. However, instead of cancelling the activity they pressed forward, enduring the torrential rains that often seemed scary. Everyone was safe, and they ended up having a very good experience together.
Her story reminded me of last summer, when my son attended scout day camp. One day the camp closed early due to severe weather, and while we all made it home safely, the drive home was indeed an adventure. Camp proceeded again on the next day, but at the first rumble of thunder they immediately shut down and sent everyone home in a panic. This time, as we drove home we heard a second rumble of thunder. And then it was over. I don't remember seeing any rain that day. This was the last day of camp, so my son missed some eagerly anticipated activities.
Meanwhile, our church youth group had planned a handcart trek activity for months, and despite severe weather on the evening before they were to leave, they still got up early in the morning and hiked toward Oklahoma. At some point during the trip the severe weather returned, but miraculously their little camp was spared while the storms raged nearby.
Practically speaking, it's always better to be safe than sorry -- especially when it comes to North Texas weather in the spring. But as always, I saw a life lesson in these experiences. Metaphorically speaking, when life gets cloudy (or even stormy) should we cancel? Of course not! This is the time to press forward and endure whatever we have to face, so that we don't miss valuable opportunities. It's not as dangerous as driving through a Texas storm. We can navigate the storms of life safely, especially as we put our trust in the Lord, who has power to calm any tempest and protect us from harm.
This also reminded me of a line from a hymn that another friend (thanks, Marnie!) shared with me long ago:
Ye fearful Saints, fresh courage take.
The clouds ye so much dread
Are big with mercy, and shall break
In blessings on your head.
Tuesday, April 27, 2010
"Perfectly Stable!"
My doctor didn't waste any time bringing the good news! In fact, she said I could come back "in three or four months," depending on my schedule, so I have earned my longest interval between scans!
Monday, April 26, 2010
Testing...testing...
Tomorrow is MRI day for me and the beginning of two days of TAKS testing for my son. My test is a lot easier for many reasons:
1. My test requires a nap in a tube for about an hour, followed by several hours of waiting until my doctor gets the radiologist's report. Jacob's tests go for two days, and we won't know the results for several weeks.
2. The absolute worst outcome of my test would be a heads-up that I am dying, which is something that we already know will happen to all of us. The absolute worst outcome for Jake would be repeating the third grade (which to him is a fate worse than death).
3. Thinking about my son's TAKS test will not change the outcome of my MRI. But thinking about Mom's MRI could distract Jake and affect the outcome of his test. Fortunately, his most critical test is on Wednesday, which we hope will be after we've celebrated a good result.
4. I am well-acquainted with the prayer cushion that has supported me for more than four years. It has calmed and sustained me through good news and bad news. My son may not have as many people praying for him. (However, I'll be compensating for any gap with my own prayers on his behalf!)
So his is a little harder than mine. But the good news is that we'll both deal with whatever comes from these tests. And in a hundred years, we might not even remember that we had them!
1. My test requires a nap in a tube for about an hour, followed by several hours of waiting until my doctor gets the radiologist's report. Jacob's tests go for two days, and we won't know the results for several weeks.
2. The absolute worst outcome of my test would be a heads-up that I am dying, which is something that we already know will happen to all of us. The absolute worst outcome for Jake would be repeating the third grade (which to him is a fate worse than death).
3. Thinking about my son's TAKS test will not change the outcome of my MRI. But thinking about Mom's MRI could distract Jake and affect the outcome of his test. Fortunately, his most critical test is on Wednesday, which we hope will be after we've celebrated a good result.
4. I am well-acquainted with the prayer cushion that has supported me for more than four years. It has calmed and sustained me through good news and bad news. My son may not have as many people praying for him. (However, I'll be compensating for any gap with my own prayers on his behalf!)
So his is a little harder than mine. But the good news is that we'll both deal with whatever comes from these tests. And in a hundred years, we might not even remember that we had them!
Monday, April 12, 2010
Another twelfth!
I have counted off fifty-two "twelfths" on the calendar, and hope to count off many more. Another month of survival under my belt!
Speaking of belts, our family spent Saturday in a karate tournament in Houston. It was my daughter's first year to compete, and it was the second year for the rest of us. With half my brain tied behind my back, I did one of my favorite black belt forms in the kata competition. It went over like a lead balloon (probably because that's what I looked like in my black uniform) but I was happy to be out there, alive and kicking. I didn't win, but I earned some great feedback from the judge and proved that I still had memory and balance.
The rest of my family (those who are allowed to get hit in the head) competed in sparring, and each of them won 4th place in their respective divisions. In each case they had an uphill battle, fighting against people who were older or bigger (or both). It was daunting to face an opponent who was bigger and tougher, but I was happy to see them fight through their fear. My son used the same approach again to win second place in his kata competition. He was the youngest in his group, and he later said that he made some mistakes in his performance, but he kept going as though nothing could stop him. And nothing did! It was a good lesson for any uphill battle in life.
Speaking of belts, our family spent Saturday in a karate tournament in Houston. It was my daughter's first year to compete, and it was the second year for the rest of us. With half my brain tied behind my back, I did one of my favorite black belt forms in the kata competition. It went over like a lead balloon (probably because that's what I looked like in my black uniform) but I was happy to be out there, alive and kicking. I didn't win, but I earned some great feedback from the judge and proved that I still had memory and balance.
The rest of my family (those who are allowed to get hit in the head) competed in sparring, and each of them won 4th place in their respective divisions. In each case they had an uphill battle, fighting against people who were older or bigger (or both). It was daunting to face an opponent who was bigger and tougher, but I was happy to see them fight through their fear. My son used the same approach again to win second place in his kata competition. He was the youngest in his group, and he later said that he made some mistakes in his performance, but he kept going as though nothing could stop him. And nothing did! It was a good lesson for any uphill battle in life.
Thursday, April 08, 2010
Deja vu all over again
This wasn't the beginning of a seizure. It's one of my favorite Yogi Berra phrases.
Today I registered my daughter for kindergarten. It seems like only yesterday when I was filling out my son's kindergarten registration forms, writing the same information in response to "Are there any special things we should know about your child?" ("Please be sensitive to the fact that Mom has cancer.") Back then I wondered who would be filling out these forms for my daughter, who was an infant at the time.
Glad to discover that it would be me!
Today I registered my daughter for kindergarten. It seems like only yesterday when I was filling out my son's kindergarten registration forms, writing the same information in response to "Are there any special things we should know about your child?" ("Please be sensitive to the fact that Mom has cancer.") Back then I wondered who would be filling out these forms for my daughter, who was an infant at the time.
Glad to discover that it would be me!
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