We may or may not be normal, but waiting four weeks to post scan results does mean one thing--that they were clear :)
Which was the only good part of that morning. Let me explain. No, is too long . . . let me sum up.
Scans were scheduled for Tuesday, December 1st. Chris was in Boston. It was the day after Emma's birthday. Jake and I had to be at Primary Children's at 7:00 a.m. for the CT scan, followed by the MRI at 8:00.
And it was snowing.
Not just snowing. SNOWING.
I do not like driving in the snow. Ever. At all. Period.
Didn't have a choice. (Well, I suppose I did have a choice, I could have stayed home. Or turned around when it became apparent how truly awful the roads were, which was about fifty feet from our driveway. But cancelling meant having to wait until January for scans and I simply could not face Christmas not knowing for certain.)
So off we went, leaving the house at 5:40 a.m. for the normally 50-minute drive.
It wasn't early enough.
By 6:40 a.m., we had finally reached I-15. I had hoped it would be slightly better. It wasn't. No lane lines in sight, four-wheel drive vehicles passing at insane speeds, snow falling so thick and fast that I couldn't see more than five feet.
I have never been so grateful to reach somewhere safely as I was to pull into Primary Children's parking lot at 7:40 a.m. I seriously considered never leaving until spring.
But finally scans were upon us. (Might I point out that, although we were almost 45 minutes late, we were the first patients to make it to the Radiology department that morning. So scans went swimmingly fast.)
I refused to leave the hospital between the end of scans at 9:15 and his clinic appointment at 11:30. So Jake and I found a comfy set of couches on the third floor and he curled up to take up a nap. I, being an experienced hospital mom, had a book with me.
The Hem/Onc clinic wasn't nearly as fast as Radiology. By 11:30, the roads had become more passable, so patients with earlier appointments were finally showing up and everyone was pushed back. We waited. And waited. And waited.
At 1:00, we finally saw Dr. Afify. As always, she was off-hand but direct in reporting clean scans. I'll confess I drew a deep breath of relief. After having had no nerves last time, this time I'd been nothing but nerves. Jake had had a cough for a month and I was sure that, that the least, the chest CT would show signs of something. But all clear and we were out of there at 1:15.
It took us only 55 minutes to get home. What a difference a few hours makes.
We're now halfway to the critical two-year mark. (Almost all cases of rhabdo relapse occur in the first two years off treatment.) And we're now on an every four month schedule of scans rather than every three months. Next scans in April.
Hopefully I'll be able to see lane lines next time around.
Monday, December 28, 2009
Friday, September 11, 2009
Scans
I'm telling myself that waiting more than ten days to post scan results is a sign that our lives our returning to normal.
I don't think myself believes that. I can hear it's taunting voice whispering, "Lazy, lazy, lazy . . ."
Scans were clear. Let the wild rumpus start.
It was an odd day for me. I wasn't nervous. I didn't spend any time pondering the possibility that they wouldn't be clear. And when we were told all clear, I thought, "Yes, now what's the next thing?"
I spent last Monday pondering the meaning of my matter-of-factness. Did I know all was well without having to be told? Did I assume that I would cope when and if I had to with a relapse? Has childhood cancer become simply a minor irritation in the fabric of my real life?
Then on Tuesday, the day after scans, Jacob had to return to Primary Children's for a follow-up eye exam. He hasn't been seen for his eyes since last September when he was nearing the end of treatment. We got the same news last week that we did last year--near enough 20/20 vision as makes no difference, slight peripheral issues with the left eye, no significant impairment from the beginning of treatment.
And an odd thing happened when Dr. Hoffman said to Jake, "You've had an absolutely amazing outcome."
When he said that, I remembered sitting with Dr. Hoffman the first week Jake was in the hospital and being told that the tumor was wrapped around his optic nerve. It hadn't invaded the nerve, but radiation to the site could cause significant damage to the left eye, including blindness.
Instead, we have no significant impairment.
And that's when my glass cracked a little. I sometimes think I carry around much of last year in a glass vase--I can see and recall the events and emotions, but with a clear wall between me and them. But last Tuesday that glass cracked slightly, just enough for me to feel the full memory of what was a small moment from the beginning. Just enough for me to feel an overwhelming gratitude for the smallest blessings Jake's been granted. Would it matter if he were blind in his left eye? Not materially, certainly not compared to his life.
But he's not.
The glass vase is necessary for me to not walk around a constant mess of tears and panic, but that doesn't mean I don't remember. And I give thanks. For all of it.
I don't think myself believes that. I can hear it's taunting voice whispering, "Lazy, lazy, lazy . . ."
Scans were clear. Let the wild rumpus start.
It was an odd day for me. I wasn't nervous. I didn't spend any time pondering the possibility that they wouldn't be clear. And when we were told all clear, I thought, "Yes, now what's the next thing?"
I spent last Monday pondering the meaning of my matter-of-factness. Did I know all was well without having to be told? Did I assume that I would cope when and if I had to with a relapse? Has childhood cancer become simply a minor irritation in the fabric of my real life?
Then on Tuesday, the day after scans, Jacob had to return to Primary Children's for a follow-up eye exam. He hasn't been seen for his eyes since last September when he was nearing the end of treatment. We got the same news last week that we did last year--near enough 20/20 vision as makes no difference, slight peripheral issues with the left eye, no significant impairment from the beginning of treatment.
And an odd thing happened when Dr. Hoffman said to Jake, "You've had an absolutely amazing outcome."
When he said that, I remembered sitting with Dr. Hoffman the first week Jake was in the hospital and being told that the tumor was wrapped around his optic nerve. It hadn't invaded the nerve, but radiation to the site could cause significant damage to the left eye, including blindness.
Instead, we have no significant impairment.
And that's when my glass cracked a little. I sometimes think I carry around much of last year in a glass vase--I can see and recall the events and emotions, but with a clear wall between me and them. But last Tuesday that glass cracked slightly, just enough for me to feel the full memory of what was a small moment from the beginning. Just enough for me to feel an overwhelming gratitude for the smallest blessings Jake's been granted. Would it matter if he were blind in his left eye? Not materially, certainly not compared to his life.
But he's not.
The glass vase is necessary for me to not walk around a constant mess of tears and panic, but that doesn't mean I don't remember. And I give thanks. For all of it.
Wednesday, June 3, 2009
Six Month Scans
All Clear.
There really aren't too many better feelings in the world than that.
I got the news by phone, since I am currently in Coeur d'Alene with my parents, Emma, and Spencer. It was Chris's job to get Jake to the hospital on June 1 for the MRI and chest CT. I warned him that Jake's least favorite part of it all is the putting in of the IV first (to be fair, an IV in the hand is quite painful). I sent Jake a "thinking of you" email Sunday night, and then waited Monday morning with breath held while taking the kids to breakfast at IHOP. As we pulled into the Costco parking lot (staying in a condo, so grocery shopping was essential) my cell phone rang. I promptly dropped it on the floor of the car and by the time I picked it up it had gone to voice mail.
I called back and got Jake. That was the moment I started breathing. I was quite sure Chris wouldn't have let him call if the news was bad. Not that I could tell from Jake's voice. The word "laconic" might have been invented for him.
"How was it?" I asked.
"Fine," he said.
"Did you get the results?"
(With a touch of surprise, as though he'd forgotten why he called) "Oh, yeah, They're clear."
And now we have three months of no worrying ahead.
I think I'll like this summer.
There really aren't too many better feelings in the world than that.
I got the news by phone, since I am currently in Coeur d'Alene with my parents, Emma, and Spencer. It was Chris's job to get Jake to the hospital on June 1 for the MRI and chest CT. I warned him that Jake's least favorite part of it all is the putting in of the IV first (to be fair, an IV in the hand is quite painful). I sent Jake a "thinking of you" email Sunday night, and then waited Monday morning with breath held while taking the kids to breakfast at IHOP. As we pulled into the Costco parking lot (staying in a condo, so grocery shopping was essential) my cell phone rang. I promptly dropped it on the floor of the car and by the time I picked it up it had gone to voice mail.
I called back and got Jake. That was the moment I started breathing. I was quite sure Chris wouldn't have let him call if the news was bad. Not that I could tell from Jake's voice. The word "laconic" might have been invented for him.
"How was it?" I asked.
"Fine," he said.
"Did you get the results?"
(With a touch of surprise, as though he'd forgotten why he called) "Oh, yeah, They're clear."
And now we have three months of no worrying ahead.
I think I'll like this summer.
Monday, February 9, 2009
CLEAN SCANS
What can I add? :)
Okay, I guess I can add that it was snowy this morning. It took us an hour and a half total for a drive that usually is around 50 minutes. But that was the worst part of the day. For me, at least. Jacob would vote having the IV as the worst part of the day for him.
After the IV placement in his hand and blood draw in the outpatient lab, we were off to Medical Imaging where we had the shortest wait in, well, ever. We hadn't been sitting down two minutes when they took him for the chest X-ray. And while he was gone for that, they came looking for him to take back to MRI. All told, we were out of the hospital (for the first time) at 10:15.
Then it was off to Hot Topic (for Jake) and Cheesecake Factory (for me) to kill a couple hours until our clinic appointment with his oncologist at 1:00. A brief hiccup when we arrived in clinic--they sent us back down to MRI because "they want to take a couple more pictures."
In the 120 seconds it took us to get down to MRI, I managed not to freak out. The doctor who read the scans was waiting for us and the first words out of his mouth were "The treatment area looks perfect." So then I could breathe again and listen to the rest of what he had to say. There was a small spot on the very edge of the MRI field that he wanted to look at better. So Jake laid back down and ten minutes later we were back in the familiar surroundings of the Hematology/Oncology clinic.
Where we got to hear Dr. Afify pronounce both the scans and Jacob as perfect. I'm getting to like that word. When she was finished with the exam and asking about school and commenting on his hair, she said, "Jacob is one of those patients that makes my job effortless."
Let's keep it that way, shall we?
Thanks for the prayers that got us here. Now I can breathe freely for the next 3 months.
Okay, I guess I can add that it was snowy this morning. It took us an hour and a half total for a drive that usually is around 50 minutes. But that was the worst part of the day. For me, at least. Jacob would vote having the IV as the worst part of the day for him.
After the IV placement in his hand and blood draw in the outpatient lab, we were off to Medical Imaging where we had the shortest wait in, well, ever. We hadn't been sitting down two minutes when they took him for the chest X-ray. And while he was gone for that, they came looking for him to take back to MRI. All told, we were out of the hospital (for the first time) at 10:15.
Then it was off to Hot Topic (for Jake) and Cheesecake Factory (for me) to kill a couple hours until our clinic appointment with his oncologist at 1:00. A brief hiccup when we arrived in clinic--they sent us back down to MRI because "they want to take a couple more pictures."
In the 120 seconds it took us to get down to MRI, I managed not to freak out. The doctor who read the scans was waiting for us and the first words out of his mouth were "The treatment area looks perfect." So then I could breathe again and listen to the rest of what he had to say. There was a small spot on the very edge of the MRI field that he wanted to look at better. So Jake laid back down and ten minutes later we were back in the familiar surroundings of the Hematology/Oncology clinic.
Where we got to hear Dr. Afify pronounce both the scans and Jacob as perfect. I'm getting to like that word. When she was finished with the exam and asking about school and commenting on his hair, she said, "Jacob is one of those patients that makes my job effortless."
Let's keep it that way, shall we?
Thanks for the prayers that got us here. Now I can breathe freely for the next 3 months.
Friday, February 6, 2009
We Might Need a New Picture
'Cause I really don't recognize the bald Jacob anymore.
I figure it's a good thing that this site lies dormant for weeks at a time. Awfully nice to not be driving to Huntsman every weekday as we were last February, or spending the night in the hospital every three weeks, or taking his temperature obsessively when he didn't feel well.
The downside is he has to go to school every day. But he's being brave about it.
Just a quick note to let you know that he will have his first off-treatment scans on Monday, February 9. MRI and chest CT. We should have the results that afternoon during our clinic visit. Feel free to pray that the scans remain clear as they have been since last spring. Scanxiety has reared its head around here and I can't wait until Monday is over.
I figure it's a good thing that this site lies dormant for weeks at a time. Awfully nice to not be driving to Huntsman every weekday as we were last February, or spending the night in the hospital every three weeks, or taking his temperature obsessively when he didn't feel well.
The downside is he has to go to school every day. But he's being brave about it.
Just a quick note to let you know that he will have his first off-treatment scans on Monday, February 9. MRI and chest CT. We should have the results that afternoon during our clinic visit. Feel free to pray that the scans remain clear as they have been since last spring. Scanxiety has reared its head around here and I can't wait until Monday is over.
Saturday, January 3, 2009
Jacob's Thoughts on One Year Ago
(Posted January 3, but written January 2)
Wow. That is all I can say after exactly a year of being diagnosed. Wow to lots of things but mostly wow to the fact that as i'm looking back I have no idea how I actually managed to get through this. Looking back I've realised how hard it should have been when In the midst of it all I hardly thought any-thing of it. I just felt it was normal every day stuff, and now I'm going into after-shock realizing how hard it really was. But so many good things have come of it that I can honestly say getting cancer Is one of the greatest things thats ever happened to me. I've learned so much and I now have a much different outlook on life.
Now Reading back over my moms early posts I feel so strange and I've realised how calm I was in those first four days when I had every reason in the world to panic. Looking back on treatment I think that the hardest week for me was the very last week of radiation when my mouth and throat hurt so bad that I ate nothing and I'd lost 17 pounds. Now exactly a year later it is 11:40 pm and got out of bed twenty minutes ago because I really felt that I needed to wright this now before the day is over. Well I'm almost done all that I have left to say is thank you. Thank you Dr. Afify and Dr. Million. Thanks for all the nurses at primary childrens. Especially Irish, Mitch, Karen, and "The Guy" Ben. Thanks for all the great radiation techs at huntsman especially Troy, Glen, and someone else who's name I cant remember now. Finally thanks for all of you people who didn't even know who I was and had never met me but still kept track of my progress and prayed for me despite not knowing me, thanks for all of that. It has been a hard but great year for me. Good Bye.
Friday, January 2, 2009
One Year Ago . . .
I was somewhere between leaving Primary Children's, picking up Matt, Emma, and Spencer from friends' houses, and sitting them down to tell them that their brother had cancer.
Today is a better day :)
Jake asked if I was going to post today, so this is for him:
I actually didn't sleep well last night. Hardly at all, in fact. I read until 1:00 a.m. and then played solitaire on my iPod until 2:00 a.m. and then lay in the dark staring at my clock until 3:00 a.m.--at some point after that I dozed but I kept waking up. When I woke up at 5:30, I couldn't go back to sleep. It was 5:30 in the morning last year when Jake was admitted to the surgical ward to await a biopsy.
There are, at least for me, only a handful of moments in time that stand out as "My life will never be the same." My children being born is the first to come to mind . . . but I had 9 months to think about that.
10:30 a.m., January 2, 2008 is a moment I never saw coming. I didn't ask for it, I didn't want it, but there it was. Standing in a hallway with a surgical resident whose name I'm not sure I ever knew as he told me, " We found the tissue sample from the dentist. The pathologist has finished his report. I'm sorry, it is cancer."
That is the only time in my life where I remember thinking: "From this moment on, everything changes."
I was only half right.
What hasn't changed? I'm still ecstatically married. I'm still the mother of four children. I'm still a writer and a friend and a woman of faith. I still live in the same house and go to the same church and send my kids to school and balance the checkbook and do laundry and read.
What has changed? Everything is deeper. Everything is clearer. Everything is more precious. Every breath I take I treasure. Every breath my children take, I give thanks.
Oh, here's something else that's changed--I listen to Matt and Jake's music (okay, more Matt than Jake. I'm sorry, Ozzy Osbourne is never going to make my list, Jake!) This summer Chris and I went with Matt and Jake to see Angels and Airwaves in Salt Lake. My favorite song of theirs is called Rites of Spring. Here's the chorus:
If I had a chance for another try . . .
I wouldn't change a thing, it's made me all of who I am inside.
And if I could thank God that I am here and that I am alive
Every day I wake I tell myself a little harmless lie . . .
The whole wide world is mine.
Would I change this day a year ago if I could?
I can honestly say no. I wish I could take away all the fear and grief and the pain and the uncertainty that Jake in particular has had to endure. But I cannot wish undone "all of who I am inside". And I cannot untangle that from Jacob's cancer.
Bless all of you who have prayed for Jake. Bless all those children who suffer tonight, from cancer or anything else. May the blessings walk hand in hand with the trials and may we always have the wisdom to see both.
Today is a better day :)
Jake asked if I was going to post today, so this is for him:
I actually didn't sleep well last night. Hardly at all, in fact. I read until 1:00 a.m. and then played solitaire on my iPod until 2:00 a.m. and then lay in the dark staring at my clock until 3:00 a.m.--at some point after that I dozed but I kept waking up. When I woke up at 5:30, I couldn't go back to sleep. It was 5:30 in the morning last year when Jake was admitted to the surgical ward to await a biopsy.
There are, at least for me, only a handful of moments in time that stand out as "My life will never be the same." My children being born is the first to come to mind . . . but I had 9 months to think about that.
10:30 a.m., January 2, 2008 is a moment I never saw coming. I didn't ask for it, I didn't want it, but there it was. Standing in a hallway with a surgical resident whose name I'm not sure I ever knew as he told me, " We found the tissue sample from the dentist. The pathologist has finished his report. I'm sorry, it is cancer."
That is the only time in my life where I remember thinking: "From this moment on, everything changes."
I was only half right.
What hasn't changed? I'm still ecstatically married. I'm still the mother of four children. I'm still a writer and a friend and a woman of faith. I still live in the same house and go to the same church and send my kids to school and balance the checkbook and do laundry and read.
What has changed? Everything is deeper. Everything is clearer. Everything is more precious. Every breath I take I treasure. Every breath my children take, I give thanks.
Oh, here's something else that's changed--I listen to Matt and Jake's music (okay, more Matt than Jake. I'm sorry, Ozzy Osbourne is never going to make my list, Jake!) This summer Chris and I went with Matt and Jake to see Angels and Airwaves in Salt Lake. My favorite song of theirs is called Rites of Spring. Here's the chorus:
If I had a chance for another try . . .
I wouldn't change a thing, it's made me all of who I am inside.
And if I could thank God that I am here and that I am alive
Every day I wake I tell myself a little harmless lie . . .
The whole wide world is mine.
Would I change this day a year ago if I could?
I can honestly say no. I wish I could take away all the fear and grief and the pain and the uncertainty that Jake in particular has had to endure. But I cannot wish undone "all of who I am inside". And I cannot untangle that from Jacob's cancer.
Bless all of you who have prayed for Jake. Bless all those children who suffer tonight, from cancer or anything else. May the blessings walk hand in hand with the trials and may we always have the wisdom to see both.
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