Saw Dr. Ogilvie this morning, and got great news. The first thing he said was that he was very happy with what he saw on the MRI - which was no sign of cancer!
The nurse who brought us into the exam room brought up the MRI images before she left. I saw some big white blob and mentioned it to Scott, who just said "Wait for the doctor." Turns out it was my stomach (from the CT scan I'd had a few weeks ago). (>8
Dr. Ogilvie went through the MRI images with us, and pointed out where the tumor had been, the inflammation from the surgery (still!), and how he determined that there wasn't any (macroscopic) tumor present. We also discussed my hand strength and sensation (or lack of) - it could be as much as a year out of radiation for those to start returning, getting drugs for my next MRI, and full travel clearance for work.
Next step: Arm MRI and chest CT scan in January. I'll have those every 3-4 months for the next two years, then less frequently for a few more years after that. Hopefully all quite boring!
Friday, October 14, 2011
Thursday, October 13, 2011
The MRI
This week I finally deemed that enough time had passed and my arm had healed sufficiently to schedule the MRI that would tell us what my status is. I had the MRI last night.
I've never had anything but an arm MRI, so I don't know what they're like for other body parts, but for arms they suck. I was told last night that arms are one of the toughest areas to scan. I was scheduled for both a forearm and an upper arm scan, and it takes a long time because they're basically scanning microscopic cross-sections of my arm, from the wrist all the way up.
I'm usually pretty laid back about what's going on with me, but I will say that I've had a lot of medical procedures done. A lot - bone marrow tests (I can't even tell you how many, but I'm sure it's more than 20. One is enough to freak you out), two bone marrow harvests, chemo (hey, folks that are hesitant to donate bone marrow because you've heard it hurts I've done it TWICE (the first time they didn't get enough neutrophils because I hadn't been off maintenance chemo long enough) and chemo's worse), a spinal tap...you get the idea. So last night, I was high maintenance. I squeezed the little ball three times and had to come out of the machine because I was freaking out (and I had to pee - note to self: do not drink smoothies on your way to future MRIs). My back was spasming, I was getting heartburn, my breathing was getting confused - I didn't know if I needed to inhale or exhale (I'm pretty sure that's what they call hyperventilating), and I was getting dizzy.
Luckily, I had a very sympathetic MRI technician (she kept calling me "Darling" - and she was a tattoed 25-year old). Finally, when we were almost done, the machine stopped working. She said she'd gotten most everything anyway, and didn't think we needed to scan the very upper arm (the tumor only went a couple inches above the elbow). But when I left, I felt like I'd been violated. And it didn't even involve a needle or a scalpel (oh, wait, there was a butterfly needle and contrast involved). I went to the co-op, bought flower healing remedy, tapioca pudding (they were out of chocolate), and went home and drank holy basil tea (it's calming), ate the pudding (hey, it's better than drinking vodka, another option I'd been considering), and watched this season's three episodes of Glee all while curled up in a ball.
The worst thing is that I'll need MRIs (along with lung CTs) regularly for the next few years. When I see the doctor tomorrow (more on that in the next paragraph), I'm going to see if they can give me some anti-anxiety meds. Ativan, valium, whatever, I'll take it (and I'm usually the one who doesn't take pain meds!). And I'll take an antacid. And no smoothies beforehand.
I see Dr. Ogilvie at 8:30 tomorrow morning to discuss the results. I've realized I discuss and plan life around them not seeing any cancer in the MRI - what else can you do? I'm not going to plan my life around this disease. That's part of that whole kicking cancer's butt thing - not letting it affect my lfe (at least not in any negative ways). But...not until the scan was done have I really thought about the what if? What if it does show residual tumor? See? There I go.
Luckily my friend Pat is taking me to a movie tonight (50/50 - a movie about cancer, wouldn't you know - it was my choice) so I won't have too much time for my mind to wander. Please keep your fingers crossed, keep me in your thoughts and prayers (now that's a weird and demanding to ask for myself!), send good vibes and energy, whatever your personal beliefs have you do. Thanks for hearing out my rants!
I've never had anything but an arm MRI, so I don't know what they're like for other body parts, but for arms they suck. I was told last night that arms are one of the toughest areas to scan. I was scheduled for both a forearm and an upper arm scan, and it takes a long time because they're basically scanning microscopic cross-sections of my arm, from the wrist all the way up.
I'm usually pretty laid back about what's going on with me, but I will say that I've had a lot of medical procedures done. A lot - bone marrow tests (I can't even tell you how many, but I'm sure it's more than 20. One is enough to freak you out), two bone marrow harvests, chemo (hey, folks that are hesitant to donate bone marrow because you've heard it hurts I've done it TWICE (the first time they didn't get enough neutrophils because I hadn't been off maintenance chemo long enough) and chemo's worse), a spinal tap...you get the idea. So last night, I was high maintenance. I squeezed the little ball three times and had to come out of the machine because I was freaking out (and I had to pee - note to self: do not drink smoothies on your way to future MRIs). My back was spasming, I was getting heartburn, my breathing was getting confused - I didn't know if I needed to inhale or exhale (I'm pretty sure that's what they call hyperventilating), and I was getting dizzy.
Luckily, I had a very sympathetic MRI technician (she kept calling me "Darling" - and she was a tattoed 25-year old). Finally, when we were almost done, the machine stopped working. She said she'd gotten most everything anyway, and didn't think we needed to scan the very upper arm (the tumor only went a couple inches above the elbow). But when I left, I felt like I'd been violated. And it didn't even involve a needle or a scalpel (oh, wait, there was a butterfly needle and contrast involved). I went to the co-op, bought flower healing remedy, tapioca pudding (they were out of chocolate), and went home and drank holy basil tea (it's calming), ate the pudding (hey, it's better than drinking vodka, another option I'd been considering), and watched this season's three episodes of Glee all while curled up in a ball.
The worst thing is that I'll need MRIs (along with lung CTs) regularly for the next few years. When I see the doctor tomorrow (more on that in the next paragraph), I'm going to see if they can give me some anti-anxiety meds. Ativan, valium, whatever, I'll take it (and I'm usually the one who doesn't take pain meds!). And I'll take an antacid. And no smoothies beforehand.
I see Dr. Ogilvie at 8:30 tomorrow morning to discuss the results. I've realized I discuss and plan life around them not seeing any cancer in the MRI - what else can you do? I'm not going to plan my life around this disease. That's part of that whole kicking cancer's butt thing - not letting it affect my lfe (at least not in any negative ways). But...not until the scan was done have I really thought about the what if? What if it does show residual tumor? See? There I go.
Luckily my friend Pat is taking me to a movie tonight (50/50 - a movie about cancer, wouldn't you know - it was my choice) so I won't have too much time for my mind to wander. Please keep your fingers crossed, keep me in your thoughts and prayers (now that's a weird and demanding to ask for myself!), send good vibes and energy, whatever your personal beliefs have you do. Thanks for hearing out my rants!
Saturday, September 24, 2011
More Thoughts
Yesterday I found out that an acquaintance died suddenly last week. I knew Carl from when I was a culinary assistant at Kitchen Window. He was a wealth of knowledge on anything food, and was one of my favorite teachers at their cooking school. I hadn't volunteered at a class for a few years, but whenever I stopped in I'd always look for him. If he was there, I could always count on staying a little longer due to whatever conversation we'd get into.
Also this last week, I learned of the death of a friend of a friend, this one from cancer. It had come back in her brain and things didn't look good. But, expected or not, her friends and family had to say goodbye.
Losing someone is always terrible. Not to be morbid here, but none of us know when or how we'll go. I could battle cancer twice only to die in a car accident. The point is, we're here today. Take advantage and live your life. Tell those around you that you love them - now. Want to run a marathon? See the Great Wall of China? Change your job? Think about how you can make those things happen.
One of my favorite quotes:
Also this last week, I learned of the death of a friend of a friend, this one from cancer. It had come back in her brain and things didn't look good. But, expected or not, her friends and family had to say goodbye.
Losing someone is always terrible. Not to be morbid here, but none of us know when or how we'll go. I could battle cancer twice only to die in a car accident. The point is, we're here today. Take advantage and live your life. Tell those around you that you love them - now. Want to run a marathon? See the Great Wall of China? Change your job? Think about how you can make those things happen.
One of my favorite quotes:
This is the beginning of a new day. God has given me this day to use as I will. I can waste it, or use it for good. What I do today is important, because I'm exchanging a day of my life for it. When tomorrow comes, this day will be gone forever, leaving in its place something that I have traded for it. I want it to be good, not evil; success, not failure; in order that I shall not regret the price I paid for it.
- W. Heartsill Wilson
Post-radiation, Post-celebration
Thanks to everyone who came to the celebration last week. There was a good turnout, and it was interesting - and also a little overwhelming - to see so many different friends and family all in one place.
Fighting cancer doesn't involve just the person that was diagnosed. And I'm not talking about the doctors, nurses, and radiation techs. It takes a lot of support from everyone you know. And, in turn, I don't think it's always easy to be the support crew, either. That's why I felt so compelled to celebrate with everyone.
My arm is already looking a lot better. It started peeling around the time of the party, and is almost done peeling (I think). Now it's just itchy and a bit sensitive. I'll wait another week or two to schedule the MRI that will that look for any residual cancer.
I did go ahead and have a lung scan on Monday, though. I had one initially, which was clear, and was overdue for the next one. I think I once read that MPNST is a persistent cancer that likes to go to the lungs, so I was a little anxious to have it done! Wednesday I got the news that everything looks good, yay!
Fighting cancer doesn't involve just the person that was diagnosed. And I'm not talking about the doctors, nurses, and radiation techs. It takes a lot of support from everyone you know. And, in turn, I don't think it's always easy to be the support crew, either. That's why I felt so compelled to celebrate with everyone.
My arm is already looking a lot better. It started peeling around the time of the party, and is almost done peeling (I think). Now it's just itchy and a bit sensitive. I'll wait another week or two to schedule the MRI that will that look for any residual cancer.
I did go ahead and have a lung scan on Monday, though. I had one initially, which was clear, and was overdue for the next one. I think I once read that MPNST is a persistent cancer that likes to go to the lungs, so I was a little anxious to have it done! Wednesday I got the news that everything looks good, yay!
Tuesday, September 13, 2011
DONE
I couldn't sleep this morning. I lay wide awake at 4:30, so read for a couple hours before getting up. I went in for my appointment at 7:45 - everyone seemed to be driving extra slow today!
I got called back right away, but wouldn't you know it, they had to reset the machine and I had to lie there for a while. I started thinking about finishing, what I would write in my blog post, and...tears came.
The machine was ready, I got my treatment, and when the technicians came in one remarked about how of course there were some issues on my last day. I realized she was maybe saying that because of my tears, so I told her I was crying because I was done.
I have been going to the University five days a week (almost) for the past seven weeks. As I was leaving, I thought about tomorrow's appointment - oh, wait, there isn't one! I'm really, really done.
The University makes it as simple and pleasant as possible. I have free access to a sweet parking spot. It's quick. I like the technicians. But it's radiation. I had to go every day, my arm is starting to suffer, and I've been in this phase of surgery plus radiation for a looong time. I'm so ready to move on. I was so fortunate to be able to mostly continue my life as normal during treatment, but now it can be even more normal. As normal as life for someone who's been through two cancer diagnoses can be.
After treatment, I saw Dr. Cho, which was fairly anti-climactic. He breezed into the room, took a look at my arm, said don't put anything on it, I'll see you in a month. And that was it.
My sarcoma journey is not over by any means. When my arm heals a bit, an MRI will be done, along with a CT scan of my lungs, to see if I'm in remission. The scans will be repeated regularly over the next five years. Just as I freaked out about every bruise 20 years ago, I'm sure I'll freak out at every lump or bump or anything that just might not feel right. But this is the milestone I'm at today, and I'm celebrating.
Hanging tough is so much easier when you have a huge support crew. Thank you to all my friends and family, for all your encouragement, kindness, and offers of assistance, and who have sent me so many supportive messages over the past few months.
Thanks to Kathleen and Jonathon, who got me on a paddleboard and fixed my (house) gutters.
To Pat, for all the movies and the Big Bowl dinners (one of these days we'll make it back to trivia!)
Thanks to Tom and Gloria for spending your Memorial Day weekend working on my house and garden, while I sat in a chair and watched.
To all of my Team in Training friends, who make me believe in the cause, and the people, even more - Sarah, for waiting around at the hospital (for way too long!) to give me a ride when I couldn't drive, to Bonnie and to Dawn, for taking me out for lunch, and to Paul, Leigh, and Jodi for making Door County that much more in my grasp.
Thanks especially to Misty, who decided she would help out by mowing my lawn all summer. And for helping me satisfy my cravings for Punch more than once.
To the breakfast bunch: Maria, Katie, Misty, and Julie - for laughter really is such good, good medicine.
To the Battles clan, for offering so much love and support from California, and for hooking me up with the awesome Dr. Pollock!
To my parents, who are always willing to drive me where I need to go, even if that might be home from Door County, and to try Indian for the first time because I'm supposed to eat turmeric.
To my sister Debra, who googled when I couldn't because I didn't want to see the statistics, who pushed me to keep asking and keep pushing at each doctor, and who worked to connect me with more doctors.
And, finally, thank you to Scott, who didn't flinch about having a girlfriend with cancer, who sat down with me to strategize about searching for second opinions doctors and how to get to them, who took on cooking for me and taking care of my house, who had to learn how jewelry fastens, and who used up his vacation time accompanying me to multitudes of appointments and surgeries.
Life is good.
I got called back right away, but wouldn't you know it, they had to reset the machine and I had to lie there for a while. I started thinking about finishing, what I would write in my blog post, and...tears came.
The machine was ready, I got my treatment, and when the technicians came in one remarked about how of course there were some issues on my last day. I realized she was maybe saying that because of my tears, so I told her I was crying because I was done.
I have been going to the University five days a week (almost) for the past seven weeks. As I was leaving, I thought about tomorrow's appointment - oh, wait, there isn't one! I'm really, really done.
The University makes it as simple and pleasant as possible. I have free access to a sweet parking spot. It's quick. I like the technicians. But it's radiation. I had to go every day, my arm is starting to suffer, and I've been in this phase of surgery plus radiation for a looong time. I'm so ready to move on. I was so fortunate to be able to mostly continue my life as normal during treatment, but now it can be even more normal. As normal as life for someone who's been through two cancer diagnoses can be.
After treatment, I saw Dr. Cho, which was fairly anti-climactic. He breezed into the room, took a look at my arm, said don't put anything on it, I'll see you in a month. And that was it.
My sarcoma journey is not over by any means. When my arm heals a bit, an MRI will be done, along with a CT scan of my lungs, to see if I'm in remission. The scans will be repeated regularly over the next five years. Just as I freaked out about every bruise 20 years ago, I'm sure I'll freak out at every lump or bump or anything that just might not feel right. But this is the milestone I'm at today, and I'm celebrating.
Hanging tough is so much easier when you have a huge support crew. Thank you to all my friends and family, for all your encouragement, kindness, and offers of assistance, and who have sent me so many supportive messages over the past few months.
Thanks to Kathleen and Jonathon, who got me on a paddleboard and fixed my (house) gutters.
To Pat, for all the movies and the Big Bowl dinners (one of these days we'll make it back to trivia!)
Thanks to Tom and Gloria for spending your Memorial Day weekend working on my house and garden, while I sat in a chair and watched.
To all of my Team in Training friends, who make me believe in the cause, and the people, even more - Sarah, for waiting around at the hospital (for way too long!) to give me a ride when I couldn't drive, to Bonnie and to Dawn, for taking me out for lunch, and to Paul, Leigh, and Jodi for making Door County that much more in my grasp.
Thanks especially to Misty, who decided she would help out by mowing my lawn all summer. And for helping me satisfy my cravings for Punch more than once.
To the breakfast bunch: Maria, Katie, Misty, and Julie - for laughter really is such good, good medicine.
To the Battles clan, for offering so much love and support from California, and for hooking me up with the awesome Dr. Pollock!
To my parents, who are always willing to drive me where I need to go, even if that might be home from Door County, and to try Indian for the first time because I'm supposed to eat turmeric.
To my sister Debra, who googled when I couldn't because I didn't want to see the statistics, who pushed me to keep asking and keep pushing at each doctor, and who worked to connect me with more doctors.
And, finally, thank you to Scott, who didn't flinch about having a girlfriend with cancer, who sat down with me to strategize about searching for second opinions doctors and how to get to them, who took on cooking for me and taking care of my house, who had to learn how jewelry fastens, and who used up his vacation time accompanying me to multitudes of appointments and surgeries.
Life is good.
Note About Parking for Friday's Celebration
Just a reminder that everyone is invited to the celebration for completing radiation.
The party is 6-10 this Friday (September 16) at Moto-i in Minneapolis.
2940 Lyndale Ave South
www.moto-i.com
There are a few parking options:
Street parking (non-metered but might be hard to find)
There is also a lot across the street behind the Jungle Theatre ($2-$3 for the night)
Underground parking lot around the corner (enter on Aldrich)
The party is 6-10 this Friday (September 16) at Moto-i in Minneapolis.
2940 Lyndale Ave South
www.moto-i.com
There are a few parking options:
Street parking (non-metered but might be hard to find)
There is also a lot across the street behind the Jungle Theatre ($2-$3 for the night)
Underground parking lot around the corner (enter on Aldrich)
Monday, September 12, 2011
DCC Weekend - Addendum
We had to leave Door County early this morning - because I had to make it back home in time for radiation session #31. Done!
I feel like I should have made one of those construction paper chains I made in junior high to count down the last few days of school every year. Perhaps waiting for the ball to drop on New Year's will never be the same again.
Because I'm down to one. One! Just one radiation session left, and that's 7:45 tomorrow morning.
The arm is bad. Every day this weekend it got worse. It got more red, more yucky-looking, more reptilian looking. It hurts to touch it. My fingers are more numb and I keep typing Gs instead of Bs (and my last post contained the word "bike" a lot). But I'm so close, I keep telling myself. It will keep getting worse for a few days, but Dr. Cho tells me it should start improving after Friday or so.
Not sure how frequently folks read this blog (if at all), but I will post as soon as I can after tomorrow's session and meeting with Dr. Cho.
I feel like I should have made one of those construction paper chains I made in junior high to count down the last few days of school every year. Perhaps waiting for the ball to drop on New Year's will never be the same again.
Because I'm down to one. One! Just one radiation session left, and that's 7:45 tomorrow morning.
The arm is bad. Every day this weekend it got worse. It got more red, more yucky-looking, more reptilian looking. It hurts to touch it. My fingers are more numb and I keep typing Gs instead of Bs (and my last post contained the word "bike" a lot). But I'm so close, I keep telling myself. It will keep getting worse for a few days, but Dr. Cho tells me it should start improving after Friday or so.
Not sure how frequently folks read this blog (if at all), but I will post as soon as I can after tomorrow's session and meeting with Dr. Cho.
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