Yesterday I got my stitches out - all 26 of them. That's only 3 more than last year so I think that's good. They don't use any topical anesthetic to get the stitches out and I was in a world of hurt as some were extremely tight and embedded in my skin. Nothing like someone pulling on a stitch to make you yelp in pain! I was not prepared for this year's stitch removal to be so much more painful than last year's.
I'll spare you the pictures but my Franken Foot makes one hell of a scary Halloween costume!
I got some good understanding of my condition talking with the DR. He cut further down and higher up in my foot so he could see for sure the whole length of the tendon as he searched for the tumor. He did cut the sheath open to view the whole area. Last year's repair to keep the tendon in place did need to be cut but it was strong and he was able to reaffix it with a few stitches.
This time the tumor appears to have only grown back in the foot area and not up high in my calf which is good.
I also got a better idea about how they measure the tumor in pathology. You cannot cut out GCT like a regular cancer tumor which they remove in one lump. GCT is more diffuse and they cut it out piece by piece. That's why it is so hard to get it all and it often grows back.
To send the tumor to pathlogy they squish all the pieces together to make an aggregate measurement. So its not actual tumor size but its how much tumor you had. Last year my aggregate measurement was 8x7 cm. This year I am 4x3.5 so exactly half the size. I think this is good news, as that is a good example of one year's growth. Maybe if it does grow back we can wait longer for surgery? I for one am not eager to do this again.
I am in a boot cast for four more weeks and adding weight bearing as I can tolerate the pain (which isn't very much today). Then we will schedule physical therapy again (not looking forward to that).
In early December I return to the DR and we will discuss next steps and when we might do an MRI to see if the tumor is growing back. In the meantime, more rest and recovery.
deck
Thursday, October 31, 2019
Tuesday, October 29, 2019
Solve the Puzzle
Our move home went smoothly and things are going well. Its good for everyone to be back in our own space. I'm navigating the house fairly well and trying not to push myself too hard. There have been a few painful days that have caused me to turn to the Oxy again but overall I'm getting by on the Tylenol.
Tomorrow is my follow up appointment after surgery and I find myself having anxiety. I'm not worried about seeing the scar or counting the stitches or even the pain of having them removed. I've done all that before. None of that makes me anxious. What I am anxious about is my need to have answers.
I'm not even recovered from this surgery and I am eagerly anticipating the next step in my life with Giant Cell Tumor. Just like before the surgery, I find my brain trying to work this out, like it is a problem I can solve. Like a Rubix Cube I pick this puzzle up and worry it, figure it, ask questions, and try again, always seeking an answer that isn't there.
There is no solution.
There is no one who knows what happens next.
There is nothing I can do.
These truths are hard for me to accept.
In "When Things Fall Apart" Pema Chodron writes about trying to slow the habitual momentum of the mind. Stopping our habitual state of mind and going against the grain of how we normally operate. She imagines it like a huge wheel with colossal momentum going in a habitual direction that we must slow down and push the other way.
I am working to embrace this idea and stop my mind's habitual returning to the Rubix Cube or puzzle of my tumor and my future. When I think of my foot, my tumor, my next appointment, etc, I am tempted to pick up the puzzle and work it for awhile, looking for a solution. But this is not a good thing. There is no solution and working the puzzle only causes frustration and grief.
So, I am trying to notice this urge to pick up and worry the puzzle and instead to put the puzzle down and accept. Stop the worry wheel by accepting this moment right now.
I think about the pain I have right now, that is a centering place. I remember that I did have a choice to make, surgery or meds, pain or fatigue and nausea, and I chose pain. I remember that I did have power and I exercised it. And I exercise power now by letting go of my worry. Stopping the habitual momentum of my worry mind.
So, for today, I am accepting the pain of today. Accepting the unknown of tomorrow. Accepting that I do not have control of Giant Cell Tumor and neither does my Doctor. We are both at its whim and mercy. And we cannot plan our next move until the tumor makes its next move. So we cannot do anything now but heal and wait.
Put the puzzle down.
Tomorrow is my follow up appointment after surgery and I find myself having anxiety. I'm not worried about seeing the scar or counting the stitches or even the pain of having them removed. I've done all that before. None of that makes me anxious. What I am anxious about is my need to have answers.
I'm not even recovered from this surgery and I am eagerly anticipating the next step in my life with Giant Cell Tumor. Just like before the surgery, I find my brain trying to work this out, like it is a problem I can solve. Like a Rubix Cube I pick this puzzle up and worry it, figure it, ask questions, and try again, always seeking an answer that isn't there.
There is no solution.
There is no one who knows what happens next.
There is nothing I can do.
These truths are hard for me to accept.
In "When Things Fall Apart" Pema Chodron writes about trying to slow the habitual momentum of the mind. Stopping our habitual state of mind and going against the grain of how we normally operate. She imagines it like a huge wheel with colossal momentum going in a habitual direction that we must slow down and push the other way.
I am working to embrace this idea and stop my mind's habitual returning to the Rubix Cube or puzzle of my tumor and my future. When I think of my foot, my tumor, my next appointment, etc, I am tempted to pick up the puzzle and work it for awhile, looking for a solution. But this is not a good thing. There is no solution and working the puzzle only causes frustration and grief.
So, I am trying to notice this urge to pick up and worry the puzzle and instead to put the puzzle down and accept. Stop the worry wheel by accepting this moment right now.
I think about the pain I have right now, that is a centering place. I remember that I did have a choice to make, surgery or meds, pain or fatigue and nausea, and I chose pain. I remember that I did have power and I exercised it. And I exercise power now by letting go of my worry. Stopping the habitual momentum of my worry mind.
So, for today, I am accepting the pain of today. Accepting the unknown of tomorrow. Accepting that I do not have control of Giant Cell Tumor and neither does my Doctor. We are both at its whim and mercy. And we cannot plan our next move until the tumor makes its next move. So we cannot do anything now but heal and wait.
Put the puzzle down.
Thursday, October 24, 2019
Going Home
Tomorrow we are going home. Kids and I are more than ready to be back in our house. My parents have been super generous but everyone gets tired of long term house guests.
My mobility is going well. Facebook reminded me that last year I was 3 weeks non weight bearing in a cast and then 4 weeks partial weight bearing in a boot. That was a long time!
This time around I am already partial weight bearing right after surgery. That makes things so much easier.
The doctor said I could bear weight on my foot when I could withstand the pain. A few days ago I gave myself the green light for all sorts of funny boot walking. "I got this!" I said, and took off with my cane. I foolishly thought I would feel pain telling me to stop while I was in the process of testing those limits. Boy was I wrong! That night I was dying with pain. Won't know I've done too much until its too late. Soft boundaries are harder to manage then firm ones.
So going home. I'll scoot on the main floor and crutch upstairs and do my little silly boot step as long as I can manage the pain. I'll cook simple meals and kids will help keep the house clean enough and let the dog in and out. I don't want to push too hard but the sooner we get back to normal the better. For all of us.
Thanks so much for all the love and support. Next week I am back to the doctor and will finally get a look under the mysterious black boot. What do you think . . . more stitches then last time or less? Last year I had 23.
My mobility is going well. Facebook reminded me that last year I was 3 weeks non weight bearing in a cast and then 4 weeks partial weight bearing in a boot. That was a long time!
This time around I am already partial weight bearing right after surgery. That makes things so much easier.
The doctor said I could bear weight on my foot when I could withstand the pain. A few days ago I gave myself the green light for all sorts of funny boot walking. "I got this!" I said, and took off with my cane. I foolishly thought I would feel pain telling me to stop while I was in the process of testing those limits. Boy was I wrong! That night I was dying with pain. Won't know I've done too much until its too late. Soft boundaries are harder to manage then firm ones.
So going home. I'll scoot on the main floor and crutch upstairs and do my little silly boot step as long as I can manage the pain. I'll cook simple meals and kids will help keep the house clean enough and let the dog in and out. I don't want to push too hard but the sooner we get back to normal the better. For all of us.
Thanks so much for all the love and support. Next week I am back to the doctor and will finally get a look under the mysterious black boot. What do you think . . . more stitches then last time or less? Last year I had 23.
Sunday, October 20, 2019
The Hard Work of Recovery
Everyone is at church right now but me. I know some Pastors love a day off church but really I prefer church. I even go to church when I'm on vacation. We are welcoming new members today and it breaks my heart that I can't be there. I would much rather be at worship then spending another day on the couch.
For me, one of the greatest struggles of this process is my inability to do anything. Days on end spent on the couch are the worst. I read and sew and watch a little TV. Play candy crush and surf Facebook. I do way too much online shopping. Oh well. I hate doing nothing. On my days off I love to keep busy, grocery shopping, cleaning house, working in the yard. Even on my Sabbath days I'm in the quilt room, baking, and making tasty dinners for the family. Now I am literally doing nothing, every day.
Yesterday I did too much. Got up at one point and tried to cross the room without my crutches. My foot was OK but I strained my back. I always forget that its not just the surgery site that is upset but the whole body gets thrown out of whack.
We also had a big blow up with the kids. I know lots of readers know my kids and they are pretty good at school but like every kid at home they like to push the boundaries. One in particular was in rare form last night that resulted in punishment, anger, and tears. I am the primary disciplinarian and as it became clear that the mom-hammer needed to come down I ended up getting myself upstairs and after them before anyone realized what was happening. Needless to say, everyone was sad and sorry and I was really sore by the end of the night last night.
That is pretty normal behavior for kids and moms. This time of rest and recovery is really hard on everyone in the family. And it embarrassing to have our meltdowns at my parents' house instead of the privacy of our own home. We are all ready to move out but my Mom isn't having it. She still wants me under her watchful eye. And she knows I'm likely to do too much too soon.
I can't take this silly boot off and it has a big rounded front so it makes the knee scooter nearly impossible. That means crutches only. Which means I can't carry anything anywhere. I could make dinner, but not bring it to the table. Pour a cup of coffee but not carry it to a place to sit. Make kids lunches but not get them in back packs. Plus, truth be told, I can only stand for about 5 minutes max so all that is pie in the sky anyway. And so, we are all stuck here. And my parents' are super generous to take care of all of us, but really, we would all rather be at home.
And so this is the hard work of recovery. I really really don't like it. My mental health struggles along with my spirit. These are dark days. But we must keep going. At some point this too shall pass.
Here is the view out my window this morning. Pretty much sums up how I feel.
For me, one of the greatest struggles of this process is my inability to do anything. Days on end spent on the couch are the worst. I read and sew and watch a little TV. Play candy crush and surf Facebook. I do way too much online shopping. Oh well. I hate doing nothing. On my days off I love to keep busy, grocery shopping, cleaning house, working in the yard. Even on my Sabbath days I'm in the quilt room, baking, and making tasty dinners for the family. Now I am literally doing nothing, every day.
Yesterday I did too much. Got up at one point and tried to cross the room without my crutches. My foot was OK but I strained my back. I always forget that its not just the surgery site that is upset but the whole body gets thrown out of whack.
We also had a big blow up with the kids. I know lots of readers know my kids and they are pretty good at school but like every kid at home they like to push the boundaries. One in particular was in rare form last night that resulted in punishment, anger, and tears. I am the primary disciplinarian and as it became clear that the mom-hammer needed to come down I ended up getting myself upstairs and after them before anyone realized what was happening. Needless to say, everyone was sad and sorry and I was really sore by the end of the night last night.
That is pretty normal behavior for kids and moms. This time of rest and recovery is really hard on everyone in the family. And it embarrassing to have our meltdowns at my parents' house instead of the privacy of our own home. We are all ready to move out but my Mom isn't having it. She still wants me under her watchful eye. And she knows I'm likely to do too much too soon.
I can't take this silly boot off and it has a big rounded front so it makes the knee scooter nearly impossible. That means crutches only. Which means I can't carry anything anywhere. I could make dinner, but not bring it to the table. Pour a cup of coffee but not carry it to a place to sit. Make kids lunches but not get them in back packs. Plus, truth be told, I can only stand for about 5 minutes max so all that is pie in the sky anyway. And so, we are all stuck here. And my parents' are super generous to take care of all of us, but really, we would all rather be at home.
And so this is the hard work of recovery. I really really don't like it. My mental health struggles along with my spirit. These are dark days. But we must keep going. At some point this too shall pass.
Here is the view out my window this morning. Pretty much sums up how I feel.
Friday, October 18, 2019
Recovery Mode
Finally I am in recovery mode. Been meaning to write for awhile but the pain meds had me extremely loopy for a few days.
Surgery went well. There was fear that a tendon repair that had been performed last year would have to be cut again and I would be stuck with something called a snapping tendon. But luckily, the tumor was only active in the lower half of my foot and last year's repair held.
I was really sad in the hospital. It was so busy and crowded there. 29 surgeries starting at 8am. I got teary eyed being wheeled into the room but the staff was very kind and gentle. Two nerve blocks took care of the pain but after surgery I got nauseous. They gave me some anti-nausea and then I could not wake up. They kept trying to kick me out of the hospital because they needed the space but I was fully out of it. Even felt myself stop breathing. Like I was doing my yoga breath and I just knew I only needed two breathes a minute. The poor nurse kept having to shake me. "Come on Heather, breathe!" She brought both my parents back to try to wake me up and my poor Dad was just like, "what am I supposed to do?" She finally gave up and let me sleep and after another hour or so I was awake and ready to move along.
She was happy with my mobility in and out of the wheel chair and my extra large pants (to get over the boot). I kept trying to tell her we did this all once before.
In another repeat from last year I am living on my mother's couch. Once again, I got to feeling bad on the oxycodone. Mom read off the side effects: headache, nausea, upset stomach, fatigue, constipation. I got them all - except excessive happiness. Don't know why I can't get that side effect!
So, now I am just rocking the Tylenol. Would rather have pain then feel barfy. If I can keep my foot up its not too bad. If I try to stand for too long (like brushing my teeth) my foot really starts to complain.
I figure kids and I will live at mom's another week or so. The Dr says I can put weight on this foot right away, but I need to be able to tolerate the pain and right now that isn't happening. I need to be able to get kids fed and off to school before I go home, and we're not there yet.
So, just living on the couch. Reading, sewing, and hanging out all day. Trying really hard not to bother my parents as no one loves a permanent house guest who is literally good for nothing.
Was the surgery a success? We wont know for at least 6 months. Also don't know how big the incision is. Everything remains a secret under the big black boot until my next appointment which is October 30th.
Thanks friends for your support. Here are some pics of me freezing while I wait for my surgery and me and my big boot today.
Surgery went well. There was fear that a tendon repair that had been performed last year would have to be cut again and I would be stuck with something called a snapping tendon. But luckily, the tumor was only active in the lower half of my foot and last year's repair held.
I was really sad in the hospital. It was so busy and crowded there. 29 surgeries starting at 8am. I got teary eyed being wheeled into the room but the staff was very kind and gentle. Two nerve blocks took care of the pain but after surgery I got nauseous. They gave me some anti-nausea and then I could not wake up. They kept trying to kick me out of the hospital because they needed the space but I was fully out of it. Even felt myself stop breathing. Like I was doing my yoga breath and I just knew I only needed two breathes a minute. The poor nurse kept having to shake me. "Come on Heather, breathe!" She brought both my parents back to try to wake me up and my poor Dad was just like, "what am I supposed to do?" She finally gave up and let me sleep and after another hour or so I was awake and ready to move along.
She was happy with my mobility in and out of the wheel chair and my extra large pants (to get over the boot). I kept trying to tell her we did this all once before.
In another repeat from last year I am living on my mother's couch. Once again, I got to feeling bad on the oxycodone. Mom read off the side effects: headache, nausea, upset stomach, fatigue, constipation. I got them all - except excessive happiness. Don't know why I can't get that side effect!
So, now I am just rocking the Tylenol. Would rather have pain then feel barfy. If I can keep my foot up its not too bad. If I try to stand for too long (like brushing my teeth) my foot really starts to complain.
I figure kids and I will live at mom's another week or so. The Dr says I can put weight on this foot right away, but I need to be able to tolerate the pain and right now that isn't happening. I need to be able to get kids fed and off to school before I go home, and we're not there yet.
So, just living on the couch. Reading, sewing, and hanging out all day. Trying really hard not to bother my parents as no one loves a permanent house guest who is literally good for nothing.
Was the surgery a success? We wont know for at least 6 months. Also don't know how big the incision is. Everything remains a secret under the big black boot until my next appointment which is October 30th.
Thanks friends for your support. Here are some pics of me freezing while I wait for my surgery and me and my big boot today.
Monday, October 14, 2019
New theme
How about my new header picture? I love this. My friend at church took this portrait of me and my left foot when we thought I was having it amputated. Going to keep the foot for now and add the picture as well. This is the fighter I want to be and it will be a long time before I can do this pose again.
Tomorrow is my surgery. Think of me at 8am central time if you can. I hope the doctor is successful in removing the tumor. I think he might be but he probably won't be. Like when I buy a lottery ticket and I think I might win but I probably won't. This is like that. But maybe this time I will win.
Either way I will be OK. I love reading my Buddhist books and focusing on today only and accepting things the way they are. That philosophy is just so helpful right now. When my doctor told me this tumor was a chronic condition I just wanted to run away. Amputation seemed like a good choice because then I wouldn't be fighting the tumor my whole life. But of course, amputation is a chronic condition too. There is no future without pain and suffering. So it is important to simply move forward.
My Christian faith gives me hope and comfort but the Buddhist thoughts help my calm my brain, which is something I really need.
I am getting the last things done at home and the office. We live 1.5 hours from the hospital so we will drive in tonight and stay in a hotel in town. My check-in time is 6am so it will be an early day.
So, say a prayer and think a good thought and when I can I will get back with you and update you about how surgery went, what the doctor did, and how much fun I am having living on the couch.
Cheers friends! Keep fighting! Love, smile, laugh, and all good things.
Tomorrow is my surgery. Think of me at 8am central time if you can. I hope the doctor is successful in removing the tumor. I think he might be but he probably won't be. Like when I buy a lottery ticket and I think I might win but I probably won't. This is like that. But maybe this time I will win.
Either way I will be OK. I love reading my Buddhist books and focusing on today only and accepting things the way they are. That philosophy is just so helpful right now. When my doctor told me this tumor was a chronic condition I just wanted to run away. Amputation seemed like a good choice because then I wouldn't be fighting the tumor my whole life. But of course, amputation is a chronic condition too. There is no future without pain and suffering. So it is important to simply move forward.
My Christian faith gives me hope and comfort but the Buddhist thoughts help my calm my brain, which is something I really need.
I am getting the last things done at home and the office. We live 1.5 hours from the hospital so we will drive in tonight and stay in a hotel in town. My check-in time is 6am so it will be an early day.
So, say a prayer and think a good thought and when I can I will get back with you and update you about how surgery went, what the doctor did, and how much fun I am having living on the couch.
Cheers friends! Keep fighting! Love, smile, laugh, and all good things.
Thursday, October 10, 2019
Cool Tumor Pics
My mom is obsessive about searching the internet for Giant Cell Tumor information and this week she came across a PDF from a hospital in China that had really cool pictures of a Giant Cell Tumor of the tendon sheath in the ankle.
This woman's tumor is in the tendon sheath on the top of her foot and mine is in the tendon sheath that runs along the outside of the ankle but you can get a pretty good idea of what the surgeon is up against.
The first photo shows the tumor as it appears with all the muscles and tendons and then as it would be if you could only see the bones, major arteries, and the tumor itself (red blob).
Then there is a photo just up close of the tumor around the ankle.
This woman's tumor is actually smaller than my first tumor was. My tumor now is longer then this but may not be as thick. Haven't had an MRI in a few months so I'm not sure exactly its size.
My surgeon needs to get EVERY cell of the tumor to keep it from growing back. You can imagine how hard that would be at accomplish. Even if you cut out every bit of the tumor you can see, there still might be a cell leftover somewhere. So, wish him luck on Tuesday.
And I totally showed these pictures at my session meeting last night. (I'm cool like that)
This woman's tumor is in the tendon sheath on the top of her foot and mine is in the tendon sheath that runs along the outside of the ankle but you can get a pretty good idea of what the surgeon is up against.
The first photo shows the tumor as it appears with all the muscles and tendons and then as it would be if you could only see the bones, major arteries, and the tumor itself (red blob).
Then there is a photo just up close of the tumor around the ankle.
This woman's tumor is actually smaller than my first tumor was. My tumor now is longer then this but may not be as thick. Haven't had an MRI in a few months so I'm not sure exactly its size.
My surgeon needs to get EVERY cell of the tumor to keep it from growing back. You can imagine how hard that would be at accomplish. Even if you cut out every bit of the tumor you can see, there still might be a cell leftover somewhere. So, wish him luck on Tuesday.
And I totally showed these pictures at my session meeting last night. (I'm cool like that)
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