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)
Wednesday, October 9, 2019
Ok Then
Today is a better day. One step at a time. Moving forward with hope.
I am thinking about how all this plays out (of course I am) wondering why I would have been led down this convoluted path. I realized that I needed to accept amputation in order to say no to chemo. And it is in saying no to chemo that I am saying yes to surgery. That was the choice I made, and it is a good choice. Hopefully now, surgery will be a success. Recovery now can't be nearly as hard as amputation would have been, right?
Everyone is reminding me about all the great things I said about "one day at a time" and all that. Preaching on a blog or in a pulpit is a lot easier than living into fear. Yes, one day at a time. Today is a good day and just go with that I guess.
I am fascinated in this whole process by my own reluctance to pray for myself. As a Pastor I spend lots of time in prayer, but it is always for other people. I carry their burdens around and bring them before God. I am not as good at praying for myself. I don't ask God to give me things or do things for me. I know you are out there praying for a miracle for me. I'm not sure I can pray for a miracle for myself.
It is so much easier to pray for other people. To ask God to do for them. And its not like I don't want God to do for me too. Its just that I know God is with me, whatever day now brings, and whatever day tomorrow is. I don't need to pray for that (and it is the only thing I would ever ask for myself) because I know so surely it is true.
So there will be hardship, there will be suffering, there will be pain, and a long recovery and of course God will be there. And it will be months or even years before we know if this is a success and it doesn't really matter. Because God is in all those moments too.
God just is. And I just am. And so we are together no matter what comes.
OK then. One day at a time. (or the best I can manage at that struggle to let go of my deep desire to plan and control) This is my constant lesson. My daily lesson. Ok then.
I am thinking about how all this plays out (of course I am) wondering why I would have been led down this convoluted path. I realized that I needed to accept amputation in order to say no to chemo. And it is in saying no to chemo that I am saying yes to surgery. That was the choice I made, and it is a good choice. Hopefully now, surgery will be a success. Recovery now can't be nearly as hard as amputation would have been, right?
Everyone is reminding me about all the great things I said about "one day at a time" and all that. Preaching on a blog or in a pulpit is a lot easier than living into fear. Yes, one day at a time. Today is a good day and just go with that I guess.
I am fascinated in this whole process by my own reluctance to pray for myself. As a Pastor I spend lots of time in prayer, but it is always for other people. I carry their burdens around and bring them before God. I am not as good at praying for myself. I don't ask God to give me things or do things for me. I know you are out there praying for a miracle for me. I'm not sure I can pray for a miracle for myself.
It is so much easier to pray for other people. To ask God to do for them. And its not like I don't want God to do for me too. Its just that I know God is with me, whatever day now brings, and whatever day tomorrow is. I don't need to pray for that (and it is the only thing I would ever ask for myself) because I know so surely it is true.
So there will be hardship, there will be suffering, there will be pain, and a long recovery and of course God will be there. And it will be months or even years before we know if this is a success and it doesn't really matter. Because God is in all those moments too.
God just is. And I just am. And so we are together no matter what comes.
OK then. One day at a time. (or the best I can manage at that struggle to let go of my deep desire to plan and control) This is my constant lesson. My daily lesson. Ok then.
Tuesday, October 8, 2019
Acceptance
I am still coming to terms with this new plan. I am sure you imagine I would be thrilled at the chance to keep my foot. But I am scared that this will mean more suffering and hardship for me.
I am still trying to wrap my head around how we got to this point. Didn't my DRs talk to each other? I guess they did and they didn't.
The last time I saw my surgeon in August he said he could not cut out this tumor. He said there was too much scar tissue and he could only make it smaller. He told me to go to the oncologist and try immunotherapy. "this is a really frustrating disease"
So, I imagine he called the oncologist and said "I'm sending you a Giant Cell Tumor I can't cut out".
The oncologist told me the options. I rejected the immunotherapy clinical trials, and tried the chemo. And we know that was not good for me. I asked the oncologist about surgery and he said the surgeon probably cannot cut it out. These tumors are like that. "this is a really frustrating disease" So I chose amputation.
I imagine the oncologist called the surgeon and said "I'm sending you a Giant Cell Tumor that is choosing amputation."
And so all the amputation gears clicked into place and all the plans were made. And yesterday my surgeon looked at the file again. He looked with the prosthetist and another consulting doctor and with his nurse. And they must have talked awhile because I was almost an hour late for my appointment and that was unusual.
And he came in and said "no, no amputation." This is the same Dr who said in August he couldn't cut it out. And now he wants to try to cut it out. He said, "you didn't like immunotherapy" and I said "I did chemo" and he said "no you didn't" and I said "yes I did Gleevec" and he said "I didn't want you on chemo". (what is going on here?!?)
And now we are going to try again? And I'm glad because maybe I can keep my foot and I am scared because the odds are against me. That in the end this will mean more surgery and more pain. In the long run, this may not be the good choice. Again he says "this is a really frustrating disease".
I was ready to amputate and be done with Giant Cell Tumor. And now he wants to try again. And he said, if I can't get it this time I want to try again after that and do radiation. This is exactly what I didn't want to do. I wanted to be done with this. The more surgery we do the harder the recovery is and the more my brain maps pain in my left foot and the more I am looking at amputation with phantom limb pain.
So I am glad and I am frustrated. I made a choice and now my surgeon took my choice away. And I keep telling myself that if this was an option, one more try with surgery, I would take it. So really, this is OK. Right? But it doesn't feel ok.
It seems too scary. This is the Hail Mary pass and its my foot he's throwing. The odds are against success. But we have prayer right? This is the plan right? God, why this roller coaster?
My neighbor said this morning, "maybe its like Isaac" and maybe it is. I had to be ready to say goodbye to my foot to keep my foot. I just hope this is about keeping my foot and not about keeping his ego.
I don't have a choice though. I only have a prayer.
Here's my star word from Epiphany. Think I can manage this this year?
I am still trying to wrap my head around how we got to this point. Didn't my DRs talk to each other? I guess they did and they didn't.
The last time I saw my surgeon in August he said he could not cut out this tumor. He said there was too much scar tissue and he could only make it smaller. He told me to go to the oncologist and try immunotherapy. "this is a really frustrating disease"
So, I imagine he called the oncologist and said "I'm sending you a Giant Cell Tumor I can't cut out".
The oncologist told me the options. I rejected the immunotherapy clinical trials, and tried the chemo. And we know that was not good for me. I asked the oncologist about surgery and he said the surgeon probably cannot cut it out. These tumors are like that. "this is a really frustrating disease" So I chose amputation.
I imagine the oncologist called the surgeon and said "I'm sending you a Giant Cell Tumor that is choosing amputation."
And so all the amputation gears clicked into place and all the plans were made. And yesterday my surgeon looked at the file again. He looked with the prosthetist and another consulting doctor and with his nurse. And they must have talked awhile because I was almost an hour late for my appointment and that was unusual.
And he came in and said "no, no amputation." This is the same Dr who said in August he couldn't cut it out. And now he wants to try to cut it out. He said, "you didn't like immunotherapy" and I said "I did chemo" and he said "no you didn't" and I said "yes I did Gleevec" and he said "I didn't want you on chemo". (what is going on here?!?)
And now we are going to try again? And I'm glad because maybe I can keep my foot and I am scared because the odds are against me. That in the end this will mean more surgery and more pain. In the long run, this may not be the good choice. Again he says "this is a really frustrating disease".
I was ready to amputate and be done with Giant Cell Tumor. And now he wants to try again. And he said, if I can't get it this time I want to try again after that and do radiation. This is exactly what I didn't want to do. I wanted to be done with this. The more surgery we do the harder the recovery is and the more my brain maps pain in my left foot and the more I am looking at amputation with phantom limb pain.
So I am glad and I am frustrated. I made a choice and now my surgeon took my choice away. And I keep telling myself that if this was an option, one more try with surgery, I would take it. So really, this is OK. Right? But it doesn't feel ok.
It seems too scary. This is the Hail Mary pass and its my foot he's throwing. The odds are against success. But we have prayer right? This is the plan right? God, why this roller coaster?
My neighbor said this morning, "maybe its like Isaac" and maybe it is. I had to be ready to say goodbye to my foot to keep my foot. I just hope this is about keeping my foot and not about keeping his ego.
I don't have a choice though. I only have a prayer.
Here's my star word from Epiphany. Think I can manage this this year?
Monday, October 7, 2019
A Temporary Reprieve
Today was my pre-op meeting with my surgeon. This is the same DR I have been seeing since the beginning of the Giant Cell Tumor saga. Everyone came today to talk amputation. We were there, the nurse was ready for amputation prep, and the prosthetist had driven from across town to meet with us.
Imagine our surprise when the surgeon walks in and says "No". He's not going to amputate. He's not ready.
"But I'm ready" I said. "I've talked about it and planned for it. I'm ready." "I see you are ready," he said "but I'm not."
He doesn't want to amputate unless there is a 0% chance of saving my foot. And we're not there yet.
He wants to try again to cut out my tumor. Same scheduled time 8 am next Tuesday Oct 15th and same place, the main Univ. of Kansas hospital. But this surgery will be a full 2 hours instead of the hour and a half for amputation. And I should be able to go home that day.
This will be bigger and badder then what we did last October. He will cut further down my foot, higher up my leg, and deeper inside my tendons. He will do his best to cut the whole damn thing out.
The chances of it growing back are higher than last time (and of course it grew back last time) but if there is just the slightest chance, the narrowest chance that he can cut it all out he wants to try again.
"I can amputate your foot," he said, "I just don't want to."
So, we are not out of the woods. We still are fighting Giant Cell Tumor. This will be one nasty surgery. And there is a good chance there will be another one next year. In fact, the highest likelihood is that we do this a few more Octobers and then finally we do cut off my foot.
But not right now, not this time, not next week.
I'll be in pain, and I will suffer and limp but I will have a foot.
I think he realized I am not messing around. I am not fooling with some iffy meds. I am not afraid of pain and suffering. I am game for anything so if he thinks I can take what he's dishing out then he wants to try again.
I'm in for a world of hurt - but I'll have a foot in that world.
All my praying types - keep up the good work. I think you just bought me a year of mobility!!
Whatever he does will be bigger than last time . . . here's my scar for reference. This is a current picture and you can see my tumor at the back of the ankle. Here's hoping to better luck next time.
Imagine our surprise when the surgeon walks in and says "No". He's not going to amputate. He's not ready.
"But I'm ready" I said. "I've talked about it and planned for it. I'm ready." "I see you are ready," he said "but I'm not."
He doesn't want to amputate unless there is a 0% chance of saving my foot. And we're not there yet.
He wants to try again to cut out my tumor. Same scheduled time 8 am next Tuesday Oct 15th and same place, the main Univ. of Kansas hospital. But this surgery will be a full 2 hours instead of the hour and a half for amputation. And I should be able to go home that day.
This will be bigger and badder then what we did last October. He will cut further down my foot, higher up my leg, and deeper inside my tendons. He will do his best to cut the whole damn thing out.
The chances of it growing back are higher than last time (and of course it grew back last time) but if there is just the slightest chance, the narrowest chance that he can cut it all out he wants to try again.
"I can amputate your foot," he said, "I just don't want to."
So, we are not out of the woods. We still are fighting Giant Cell Tumor. This will be one nasty surgery. And there is a good chance there will be another one next year. In fact, the highest likelihood is that we do this a few more Octobers and then finally we do cut off my foot.
But not right now, not this time, not next week.
I'll be in pain, and I will suffer and limp but I will have a foot.
I think he realized I am not messing around. I am not fooling with some iffy meds. I am not afraid of pain and suffering. I am game for anything so if he thinks I can take what he's dishing out then he wants to try again.
I'm in for a world of hurt - but I'll have a foot in that world.
All my praying types - keep up the good work. I think you just bought me a year of mobility!!
Whatever he does will be bigger than last time . . . here's my scar for reference. This is a current picture and you can see my tumor at the back of the ankle. Here's hoping to better luck next time.
Friday, October 4, 2019
Goodbye Flip Flops
Somedays are better then others and today is a good day in the whole preparing for amputation saga.
This morning I was cleaning up a shoe shelf and ran into my "outside" flip flops. These are my old ones or my yard ones. Flip flop wearers, I'm sure you know what I'm talking about.
"Well," I said to myself "might as well throw these away since I will never wear flip flops again." Won't need a left foot one and walking with one foot in one flip flop just sounds like a recipe for disaster. So off I headed to the trash can.
But as I was about to throw them in, the little voice in my head cried "Wait, you might not have your foot amputated and you will want those flip flops next summer." It amazes me that I still have this little voice. I mean, I think about amputation all the time. My brain is constantly trying to go over it and figure it out and prepare for it like it is some dreaded rubix cube I will somehow solve. How can I think amputation 24/7 and still have a little voice crying "wait!"? I imagine I will have the little "maybe this won't happen" voice until I wake up in the hospital without a foot.
If you're wondering what happened, I talked myself into throwing away the flip flops anyway. I told myself these are the old yard ones, I have other ones (which I will have to face throwing away later) and I can always buy more flip flops if I suddenly have some magical feet again.
Anyway, flip flops are the in the trash. Its a bad day for them. Its a good day for me.
This morning I was cleaning up a shoe shelf and ran into my "outside" flip flops. These are my old ones or my yard ones. Flip flop wearers, I'm sure you know what I'm talking about.
"Well," I said to myself "might as well throw these away since I will never wear flip flops again." Won't need a left foot one and walking with one foot in one flip flop just sounds like a recipe for disaster. So off I headed to the trash can.
But as I was about to throw them in, the little voice in my head cried "Wait, you might not have your foot amputated and you will want those flip flops next summer." It amazes me that I still have this little voice. I mean, I think about amputation all the time. My brain is constantly trying to go over it and figure it out and prepare for it like it is some dreaded rubix cube I will somehow solve. How can I think amputation 24/7 and still have a little voice crying "wait!"? I imagine I will have the little "maybe this won't happen" voice until I wake up in the hospital without a foot.
If you're wondering what happened, I talked myself into throwing away the flip flops anyway. I told myself these are the old yard ones, I have other ones (which I will have to face throwing away later) and I can always buy more flip flops if I suddenly have some magical feet again.
Anyway, flip flops are the in the trash. Its a bad day for them. Its a good day for me.
Thursday, October 3, 2019
Can we just not?
Today I just can't. I don't want to talk about it. I don't want to think about it. I just can't.
Somedays I console myself thinking at least I have this time to prepare. At least I can get ready to be gone from work and prepare the house and prepare the kids. I can make plans for amputation. Someone somewhere today will have an amputation they have no idea is coming.
But other days I hate this "prep" time. I hate this terrible countdown. I hate having to face what lies ahead.
My work week is Sun-Thur. That means this is the end of the week. That means I have one week left until my surgery. At least one week of office work. Its a week and a half of real days. What a wretched countdown. And I can't stop the clock. I can't help counting down. How many days left? What still needs to get done?
And I know you love me but there is nothing you can do to help. There is nothing that will make this better. There is nothing that will make this OK. So please, just leave me alone today.
I don't want to do this anymore. And so if I don't talk to you I can pretend this isn't happening.
I have never lost a loved one that was super close to me, but I imagine this is pretty typical for stages of grief. Like a part of me keeps thinking that somehow this isn't happening. And then a wave of reality washes over me and I know I am having my foot amputated. My GOD! My foot will be cut off in 12 days!! What the F***! That sucks!!
And don't tell me I'm strong and it will be OK. I am not strong I just am. And it won't be OK it will just be.
So hurry up and get here you shitty amputation day. Let's get this damn thing over with so I can get on with my life. I am tried of preparing for such an awful thing.
And you all, I love you, I really do. But just leave me alone today. This sucks.
Somedays I console myself thinking at least I have this time to prepare. At least I can get ready to be gone from work and prepare the house and prepare the kids. I can make plans for amputation. Someone somewhere today will have an amputation they have no idea is coming.
But other days I hate this "prep" time. I hate this terrible countdown. I hate having to face what lies ahead.
My work week is Sun-Thur. That means this is the end of the week. That means I have one week left until my surgery. At least one week of office work. Its a week and a half of real days. What a wretched countdown. And I can't stop the clock. I can't help counting down. How many days left? What still needs to get done?
And I know you love me but there is nothing you can do to help. There is nothing that will make this better. There is nothing that will make this OK. So please, just leave me alone today.
I don't want to do this anymore. And so if I don't talk to you I can pretend this isn't happening.
I have never lost a loved one that was super close to me, but I imagine this is pretty typical for stages of grief. Like a part of me keeps thinking that somehow this isn't happening. And then a wave of reality washes over me and I know I am having my foot amputated. My GOD! My foot will be cut off in 12 days!! What the F***! That sucks!!
And don't tell me I'm strong and it will be OK. I am not strong I just am. And it won't be OK it will just be.
So hurry up and get here you shitty amputation day. Let's get this damn thing over with so I can get on with my life. I am tried of preparing for such an awful thing.
And you all, I love you, I really do. But just leave me alone today. This sucks.
Wednesday, October 2, 2019
Hissy Fit
Lest you think I "have it all together" yesterday I had a super hissy fit.
It was a bad day all around. And then someone said something that really upset and frustrated me. And the worst part - I took it out on an unsuspecting church class.
Those nice little ladies of Brown Bag Book Group got a dose of a super pissed Pastor Heather. My anger had nothing to do with them, but they bore the brunt of my bad mood as I sought to pop every bubble and counter every comment. I said, "I'm all out of warm fuzzies" and I meant it. They got a taste of the unfiltered angry pastor that sometimes shows up in sermon writing but never in one-on-one encounters.
After work I came home and really had a cry fest, feeling angry and sorry for myself. But the thing is, I'm not upset about losing my left foot in two weeks. I'm upset at what clueless jerks everyone is being about the whole thing.
You see, I do a lot for a lot of people. Classic caregiver type pastor if there is a problem I'm probably going to fix it. And I'm always going to listen to your problem and be loving and nice.
The thing is, that person is going away soon. Scary new pastor will be here with only one foot and probably some pain. She might work like she used to but she will never be the same. Something everyone loves is dying.
And so, people are really needy right now. They really want me to do things for them and be there for them and go out to coffee, lunch, etc. People can't deal with the fact that I don't have time for them.
I mean, literally, they can't hear it. They'll say, "lets get coffee sometime" and I'll say "I don't have time" and then a few minutes later they'll say "so text me about that coffee."
I'm a limited commodity and everyone wants to get a piece.
And NO ONE is thinking about what I might need right now. I do not have enough time for me in this mad whirlwind of preparing for amputation let alone for them. Its crazy.
Pastor people, I know you get this. Like we aren't real people or we don't have needs. Everyone is worried about me and then they come to me and expect me to comfort them in their worry about me. It's my foot people - take care of yourselves for once!
And the real kicker is, no one even realizes they are doing it. Everyone is well meaning and loving and no one realizes that they are smothering me with their need and I have nowhere safe for my need.
I need to be the one OK with amputation every time I am church. I need to be the one OK with amputation every time I am home with my kids. So when do I get to be the one upset about amputation?
Not fair!! Commence hissy fit!
It was a bad day all around. And then someone said something that really upset and frustrated me. And the worst part - I took it out on an unsuspecting church class.
Those nice little ladies of Brown Bag Book Group got a dose of a super pissed Pastor Heather. My anger had nothing to do with them, but they bore the brunt of my bad mood as I sought to pop every bubble and counter every comment. I said, "I'm all out of warm fuzzies" and I meant it. They got a taste of the unfiltered angry pastor that sometimes shows up in sermon writing but never in one-on-one encounters.
After work I came home and really had a cry fest, feeling angry and sorry for myself. But the thing is, I'm not upset about losing my left foot in two weeks. I'm upset at what clueless jerks everyone is being about the whole thing.
You see, I do a lot for a lot of people. Classic caregiver type pastor if there is a problem I'm probably going to fix it. And I'm always going to listen to your problem and be loving and nice.
The thing is, that person is going away soon. Scary new pastor will be here with only one foot and probably some pain. She might work like she used to but she will never be the same. Something everyone loves is dying.
And so, people are really needy right now. They really want me to do things for them and be there for them and go out to coffee, lunch, etc. People can't deal with the fact that I don't have time for them.
I mean, literally, they can't hear it. They'll say, "lets get coffee sometime" and I'll say "I don't have time" and then a few minutes later they'll say "so text me about that coffee."
I'm a limited commodity and everyone wants to get a piece.
And NO ONE is thinking about what I might need right now. I do not have enough time for me in this mad whirlwind of preparing for amputation let alone for them. Its crazy.
Pastor people, I know you get this. Like we aren't real people or we don't have needs. Everyone is worried about me and then they come to me and expect me to comfort them in their worry about me. It's my foot people - take care of yourselves for once!
And the real kicker is, no one even realizes they are doing it. Everyone is well meaning and loving and no one realizes that they are smothering me with their need and I have nowhere safe for my need.
I need to be the one OK with amputation every time I am church. I need to be the one OK with amputation every time I am home with my kids. So when do I get to be the one upset about amputation?
Not fair!! Commence hissy fit!
Tuesday, October 1, 2019
Today I don't want to do this
I don't want to be at work today. There is too much to do at the church to get ready to be gone. Narrative budget, pledge letter, worship services for three Sundays, find an extra sermon in my back pocket, and then some. Too much. Plus this Sunday is the 10 commandments (groan). Not my favorite for crafting some sermonic inspiration.
I want a day off. A real day off. Not the day when I go see the cancer Dr or the surgeon and then try to go out to lunch and pretend everything is hunkey dorey and we are all having a good time.
I want a day off where I don't do work at church. I want a day off where I am not working at home to prepare for my impending lack of a foot. I want a day off that is just a day off with no extra crap thrown in.
And I know I should take this day. But I don't have time. There is too much to get done at church. And yes, I hear you saying just let it go, but you are not a solo pastor looking down the road and not known when if ever you will be back to normal. There are only two weeks until my surgery. And already the work schedule is tight because there are trips into town to get ready and see the surgeon and visit the psychologist.
So there is no day off. Just a pile of work and things that need to get done and inspiration to be found and ugh, its too much.
Today I don't want to do this.
Ok - enough bitching. Time to get back to work.
I want a day off. A real day off. Not the day when I go see the cancer Dr or the surgeon and then try to go out to lunch and pretend everything is hunkey dorey and we are all having a good time.
I want a day off where I don't do work at church. I want a day off where I am not working at home to prepare for my impending lack of a foot. I want a day off that is just a day off with no extra crap thrown in.
And I know I should take this day. But I don't have time. There is too much to get done at church. And yes, I hear you saying just let it go, but you are not a solo pastor looking down the road and not known when if ever you will be back to normal. There are only two weeks until my surgery. And already the work schedule is tight because there are trips into town to get ready and see the surgeon and visit the psychologist.
So there is no day off. Just a pile of work and things that need to get done and inspiration to be found and ugh, its too much.
Today I don't want to do this.
Ok - enough bitching. Time to get back to work.
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