I've been putting off this post for awhile now as it is most difficult to write. Last time I talked to you I was beginning Gabapentin. When you get this prescription the print out warns that 1 in 500 people may develop suicidal thoughts on this medicine. It turns out that 1 in 500 is me.
At first the medicine was simply making me really emotional. But as the days passed I began to be more and more unable to control my emotions. I was crying at the drop of a hat, which isn't like me. Not that I don't cry at every "Dog's Purpose" ad, just that I don't usually cry during the day, all the time and for no reason.
Less than two weeks into the medicine I was having trouble sleeping and beginning to feel more and more sad. Then one day I just couldn't take it. I skipped lunch and just drove home from work. When I pulled into the garage my brain said, "We could just shut the garage door and leave the car running". I said no.
I came inside and just cried and cried. I had planned to wrap Christmas presents for the kids but I looked at the paper and just cried and cried. I am the queen of Christmas and I love to wrap presents, to say this was out of character would be putting it mildly. This was so far out of character it was bizarre.
Instead of wrapping presents I laid on my bed and sobbed. The voice in my head told me I should simply "pull all my hair out" or "stab myself in the neck." I sobbed and sobbed. And the thing is, nothing was wrong. There was absolutely nothing to be sad about. Yes, I was bummed my foot still hurt but my foot always hurts. Definitely not worth a two hour crying jag.
Finally I perked up a bit and looked again at my bottle of Gabapentin. I began to think maybe the medicine was making me sad. Right on the bottle it says to call the Dr right away if you have mood changes, sadness, depression, or fear. So I emailed my DR and said maybe I needed to get off the medicine, I was extremely depressed.
I made it through that day. It was frightening for me and for the kids. I just kept going even though it was so very hard. Imagine me crying while I was trying to make mac and cheese for their dinner. They didn't understand but I just said my medicine was making me sad.
The next day I heard back from the Dr. His nurse called and told me to titrate off that medicine. But she said the Dr thought that wasn't really a side effect of the meds, and that I needed counseling. Unbelievable! Not that there is anything wrong with counseling but it was so totally the meds! Drs should know the side effects of this stuff. I could have killed myself! How many people has he prescribed that to? I was angry.
I am off the meds now and am feeling completely back to normal. Thank God I survived that episode, took action, and kept myself safe. I have been referred to a pain specialist and have a new diagnosis for what's happening in my left foot. "Complex Regional Pain Syndrome". I'll write more about that and my new treatment later.
In the meantime, watch out for those meds! They really can affect your brain. Take those warnings seriously and listen to your loved ones if they are having a problem with side effects from medications. That stuff is dangerous and Drs aren't always paying attention.
deck
Thursday, December 26, 2019
Thursday, December 5, 2019
Yo Gabba Gabba!
Hey friends! Things are progressing and I am doing well. Monday I saw my doctor and got permission to remove my boot cast. I also got a prescription for Gabapentin. This is a drug commonly given for nerve pain. Boy is it helping! Praise Jesus I can sleep at night. After a month of not sleeping I was becoming a real monster.
The bummer with Gabapentin is the side effects: drowsiness, dizziness, blurred vision, etc. Basically it feels like a great big glass of wine. This is awesome if you are staying home all day to chill. This is less awesome if you have to go to work, write sermons, drive your car, make dinner, etc. I have been trying to find a balance. Yesterday I didn't take it so I could drive the kids to the Orthodontist an hour away. The problem was, my foot was killing me with nerve pain. By the time I did take it, it didn't really help. So . . . that plan didn't work.
Today I am trying to stay on it so it can help the foot. I don't feel as drunk as I did the first day I took it. (There was an $80 unintended Walgreens shopping spree that day) I think overtime I will adjust to it. I am so eager to be without the nerve pain that I am willing to be drowsy. And hey, what's wrong with being chill all day? Hopefully things will balance out in a few weeks.
In other news, my foot is dumb. I don't mean that as an insult I mean it as literally dumb. Defined by Merriam Webster as silent or lacking some usual attribute. Half of my left foot is not feeling. Draw a line from the tip of the toes down to the heal, length wise, and the inside half of my foot feels and the outside half doesn't. Its like walking on a foot that's asleep without the tingling. It's not a pleasant sensation. And it may or may not resolve over time. I told the DR and he said, "yup". That's what happens when you keep cutting in the same spot.
So my dumb foot and me just keep going. We walk the dog in the morning with our stupid looking limp but both her and I are so happy to be outside we don't care. Next week I will try playing the harp with this dumb thing. The pedals won't feel right but we'll figure it out.
I also talked to the DR about the next MRI. It will be late summer before we find out if this surgery worked or if my evil tumor is still in my ankle growing away. Until then, its me and my dumb foot making our way in the world. With the help of a Gabapentin high. Good times.
The bummer with Gabapentin is the side effects: drowsiness, dizziness, blurred vision, etc. Basically it feels like a great big glass of wine. This is awesome if you are staying home all day to chill. This is less awesome if you have to go to work, write sermons, drive your car, make dinner, etc. I have been trying to find a balance. Yesterday I didn't take it so I could drive the kids to the Orthodontist an hour away. The problem was, my foot was killing me with nerve pain. By the time I did take it, it didn't really help. So . . . that plan didn't work.
Today I am trying to stay on it so it can help the foot. I don't feel as drunk as I did the first day I took it. (There was an $80 unintended Walgreens shopping spree that day) I think overtime I will adjust to it. I am so eager to be without the nerve pain that I am willing to be drowsy. And hey, what's wrong with being chill all day? Hopefully things will balance out in a few weeks.
In other news, my foot is dumb. I don't mean that as an insult I mean it as literally dumb. Defined by Merriam Webster as silent or lacking some usual attribute. Half of my left foot is not feeling. Draw a line from the tip of the toes down to the heal, length wise, and the inside half of my foot feels and the outside half doesn't. Its like walking on a foot that's asleep without the tingling. It's not a pleasant sensation. And it may or may not resolve over time. I told the DR and he said, "yup". That's what happens when you keep cutting in the same spot.
So my dumb foot and me just keep going. We walk the dog in the morning with our stupid looking limp but both her and I are so happy to be outside we don't care. Next week I will try playing the harp with this dumb thing. The pedals won't feel right but we'll figure it out.
I also talked to the DR about the next MRI. It will be late summer before we find out if this surgery worked or if my evil tumor is still in my ankle growing away. Until then, its me and my dumb foot making our way in the world. With the help of a Gabapentin high. Good times.
Wednesday, November 20, 2019
The Nerve
It's been awhile since I posted. That's because I am really struggling and I don't want to talk about it.
This has been a difficult few weeks. It is good to put weight on the foot. I am still wearing a big boot but I am able to walk slowly without my cane. Plus, my scar is healing very nicely and I don't have too much swelling. So back to work full time and things look good.
But things don't feel good. I am having nerve pain. A lot of nerve pain. My whole leg below the knee is super sensitive to touch. And my pinkie toe is on fire. It feels like I've had a giant blister and all the skin has peeled off. Nothing is wrong with it of course, everything appears normal. But the pain is intense. Nothing feels good. If I take my sock off to let it breathe after 15 minutes I can no longer stand the pain of the air on my toe.
To make matters worse the pain is always changing. Some days I am ok during the day. Some days, like today, I get waves of pain in all my toes. Today it feels like someone is torturing me with electric shocks administered to my toes at random intervals.
There is no relief for this that I can find. Tylenol and Advil don't touch it. It's not like any normal ache or pain I have had. It is electric pain energy. During the day I just try to ignore it and keep going. During the night I can't sleep at all. I lie in bed and try to relax and accept the pain. It's all in my head right? But my body wants to escape the electricity so my legs just keep kicking. Not fun.
In other news, yesterday I was supposed to be installed as Moderator of my Presbytery. Only I wasn't supposed to be I guess, because I had to resign from that position. It is hard watching that moment pass. I know if it is God's will, I will have a chance again. But still, I am sad. I couldn't get to the Presbytery meeting, I can hardly get through my day. And I can't commit to any committees, I can't even commit to a family summer vacation. I don't know what's happening, when the next surgery is, or how long I will have my foot. The next few years are totally up in the air. So yeah, that touches a nerve too.
So, I haven't posted because I am upset. I know I should feel happy, I have my foot right? But I am really struggling with pain and disappointment and fear. What if this nerve problem can't be resolved? This is the exact brain mapping type pain that I read about when I was studying up on amputation. I am so afraid this will never end and then we will amputate and then this will be my phantom limb pain forever. This is so not the path I wanted to be on.
So yeah. I just keep going. I'm ok. This morning my husband pointed out I always say that, "I'm ok". I think that's because its the only thing I can say. Not being OK is not an option right now. If I keep telling myself I'm ok then maybe I will be.
This has been a difficult few weeks. It is good to put weight on the foot. I am still wearing a big boot but I am able to walk slowly without my cane. Plus, my scar is healing very nicely and I don't have too much swelling. So back to work full time and things look good.
But things don't feel good. I am having nerve pain. A lot of nerve pain. My whole leg below the knee is super sensitive to touch. And my pinkie toe is on fire. It feels like I've had a giant blister and all the skin has peeled off. Nothing is wrong with it of course, everything appears normal. But the pain is intense. Nothing feels good. If I take my sock off to let it breathe after 15 minutes I can no longer stand the pain of the air on my toe.
To make matters worse the pain is always changing. Some days I am ok during the day. Some days, like today, I get waves of pain in all my toes. Today it feels like someone is torturing me with electric shocks administered to my toes at random intervals.
There is no relief for this that I can find. Tylenol and Advil don't touch it. It's not like any normal ache or pain I have had. It is electric pain energy. During the day I just try to ignore it and keep going. During the night I can't sleep at all. I lie in bed and try to relax and accept the pain. It's all in my head right? But my body wants to escape the electricity so my legs just keep kicking. Not fun.
In other news, yesterday I was supposed to be installed as Moderator of my Presbytery. Only I wasn't supposed to be I guess, because I had to resign from that position. It is hard watching that moment pass. I know if it is God's will, I will have a chance again. But still, I am sad. I couldn't get to the Presbytery meeting, I can hardly get through my day. And I can't commit to any committees, I can't even commit to a family summer vacation. I don't know what's happening, when the next surgery is, or how long I will have my foot. The next few years are totally up in the air. So yeah, that touches a nerve too.
So, I haven't posted because I am upset. I know I should feel happy, I have my foot right? But I am really struggling with pain and disappointment and fear. What if this nerve problem can't be resolved? This is the exact brain mapping type pain that I read about when I was studying up on amputation. I am so afraid this will never end and then we will amputate and then this will be my phantom limb pain forever. This is so not the path I wanted to be on.
So yeah. I just keep going. I'm ok. This morning my husband pointed out I always say that, "I'm ok". I think that's because its the only thing I can say. Not being OK is not an option right now. If I keep telling myself I'm ok then maybe I will be.
Thursday, October 31, 2019
Re-Recovery
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.
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.
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.
Monday, September 30, 2019
Hope and Fear
There is a lot going on and a lot not happening. I don't see my surgeon to finalize this plan until next Monday. Until then I only have a guess as to when surgery will be (we have a "penciled in" date) and where surgery will be (where I had it last time?). In the meantime I am going forward like this is really happening.
This weekend I was searching handicap bathroom aids on Amazon. Going to need a toilet seat riser and some grab bars for awhile. And I will never stand in the shower again so there's a thing. I particularly enjoy all my amazon toilet seat ads I see everywhere on the internet. Good times, thanks Amazon. Nothing like composing a work email while I'm looking at a toilet seat!
I am currently reading Pema Chodron's "When Things Fall Apart" which is a Buddhist look at suffering. She writes about hope and fear being connected and encourages people to embrace hopelessness. When I first read that chapter I was so sure she was wrong. Embrace hopelessness?? That's crazy! All I have right now is hope.
But the more I ruminate on this idea the more I think I know what she is talking about. Buddhism is all about living in the moment. All we have is this day and this moment, all we have is right now. Hope is not about this moment, rather it is about something in the future. Hope is looking for things to be different then right now. Hope is a way of avoiding the embrace of the now.
I only have now with my foot. I have a guess how this will go, that I only have 15 days left. I only have 15 24 hour periods with this foot. And in each of those days I will only have that one day to be in. I can't look ahead. I don't know what sufferings or struggles will come. I can't look behind, there is no way to change the path I have already walked. I only have today and the choices and thoughts of right now. I am not ready to embrace hopelessness but I think I understand what Pema is talking about.
On my walk this morning I was not living in the moment, rather I was thinking about other days. First I imagined talking my "walk" in my wheelchair and what that would be like. And then I said to myself, by next October you will be walking like normal with your prosthetic. And then I saw a little yellow moth flutter by and I realized it won't be here next October, it only has today. It reminded me of my need to just be in today. I don't know what any other day's walk will be, I only have today's walk.
The moth reminded me of where Jesus tells us not to worry. That part about the birds of the air and the lilies of the field and today having enough worries and not to worry about tomorrow. That is the same thing Pema was talking about with embracing hopelessness. The birds and flowers don't have tomorrow. And really, we don't either. We only have today. We only have this one moment.
So I am working to embrace hopelessness. To let fear be. To live just this one day I have. I don't know what the future will bring. But I know that if I am there, I will need to live in just that one day as well. We only have this one day, there is nothing to look forward to. I know it sounds depressing . . . but it isn't. Its actually it's own weird little hope.
This weekend I was searching handicap bathroom aids on Amazon. Going to need a toilet seat riser and some grab bars for awhile. And I will never stand in the shower again so there's a thing. I particularly enjoy all my amazon toilet seat ads I see everywhere on the internet. Good times, thanks Amazon. Nothing like composing a work email while I'm looking at a toilet seat!
I am currently reading Pema Chodron's "When Things Fall Apart" which is a Buddhist look at suffering. She writes about hope and fear being connected and encourages people to embrace hopelessness. When I first read that chapter I was so sure she was wrong. Embrace hopelessness?? That's crazy! All I have right now is hope.
But the more I ruminate on this idea the more I think I know what she is talking about. Buddhism is all about living in the moment. All we have is this day and this moment, all we have is right now. Hope is not about this moment, rather it is about something in the future. Hope is looking for things to be different then right now. Hope is a way of avoiding the embrace of the now.
I only have now with my foot. I have a guess how this will go, that I only have 15 days left. I only have 15 24 hour periods with this foot. And in each of those days I will only have that one day to be in. I can't look ahead. I don't know what sufferings or struggles will come. I can't look behind, there is no way to change the path I have already walked. I only have today and the choices and thoughts of right now. I am not ready to embrace hopelessness but I think I understand what Pema is talking about.
On my walk this morning I was not living in the moment, rather I was thinking about other days. First I imagined talking my "walk" in my wheelchair and what that would be like. And then I said to myself, by next October you will be walking like normal with your prosthetic. And then I saw a little yellow moth flutter by and I realized it won't be here next October, it only has today. It reminded me of my need to just be in today. I don't know what any other day's walk will be, I only have today's walk.
The moth reminded me of where Jesus tells us not to worry. That part about the birds of the air and the lilies of the field and today having enough worries and not to worry about tomorrow. That is the same thing Pema was talking about with embracing hopelessness. The birds and flowers don't have tomorrow. And really, we don't either. We only have today. We only have this one moment.
So I am working to embrace hopelessness. To let fear be. To live just this one day I have. I don't know what the future will bring. But I know that if I am there, I will need to live in just that one day as well. We only have this one day, there is nothing to look forward to. I know it sounds depressing . . . but it isn't. Its actually it's own weird little hope.
Wednesday, September 25, 2019
This guy
Yeah, what about this guy? My husband Lars.
Well, he is taking this in stride along with everything else in our lives. This guy moved with me to the smallest town ever in rural Washington state and that wasn't easy. And then he moved with me to Missouri and we had never even visited this state before. He is used to going on adventures with me.
This guy keeps my spirits up like no other. Always gets my jokes, always good for a laugh. Two winters ago I coughed and coughed and coughed. I had pleurisy and then pneumonia and then kept on coughing because I had undiagnosed asthma and my lungs were full of crud. I coughed so hard that one morning before the kids left for school I broke one of my ribs. Ouch! I could hardly move. This guy stayed home and helped me medicate up and lay down. And then, of course, I had to go to the bathroom and this guy helped me get there. And then . . . terror of terrors . . . I couldn't get off the toilet. I'm serious, I was totally stuck. He couldn't pull me and I couldn't stand because I was in such tremendous pain. We laughed and laughed. And then, to make matters worse, I told him to text my mom (best friend) that I was stuck on the toilet and he accidently texted one of my parishioners, "Heather is stuck on the toilet". Pastor friends imagine that. Oh my gosh we laughed so hard.
And last winter when I had my first ankle surgery and was laid up for weeks I totally lost my mind. One night I just decided I was running away. Running away is impossible when your foot doesn't work. I made a scene and hobbled down the stairs and made for my car and fell in the garage. And this guy just let me have my fit. He was there to help if I needed it but he didn't coddle or correct me. He tried to stop my fall and then just let me cry it out. He watched me crawl back inside and to the couch and just let me have my fit. No judgement from this guy. Just the space I needed and help when I wanted.
So this guy, I think he is OK. I think we have been through a lot of strange and hard things and this will be just one more chapter. This guy is pretty used to the strangeness that is me, and even though we don't always make it work most of the time we can.
This guy. He has my back. (and my heart)
These are ER selfies while waiting for him to get stiches in a cut finger
Well, he is taking this in stride along with everything else in our lives. This guy moved with me to the smallest town ever in rural Washington state and that wasn't easy. And then he moved with me to Missouri and we had never even visited this state before. He is used to going on adventures with me.
This guy keeps my spirits up like no other. Always gets my jokes, always good for a laugh. Two winters ago I coughed and coughed and coughed. I had pleurisy and then pneumonia and then kept on coughing because I had undiagnosed asthma and my lungs were full of crud. I coughed so hard that one morning before the kids left for school I broke one of my ribs. Ouch! I could hardly move. This guy stayed home and helped me medicate up and lay down. And then, of course, I had to go to the bathroom and this guy helped me get there. And then . . . terror of terrors . . . I couldn't get off the toilet. I'm serious, I was totally stuck. He couldn't pull me and I couldn't stand because I was in such tremendous pain. We laughed and laughed. And then, to make matters worse, I told him to text my mom (best friend) that I was stuck on the toilet and he accidently texted one of my parishioners, "Heather is stuck on the toilet". Pastor friends imagine that. Oh my gosh we laughed so hard.
And last winter when I had my first ankle surgery and was laid up for weeks I totally lost my mind. One night I just decided I was running away. Running away is impossible when your foot doesn't work. I made a scene and hobbled down the stairs and made for my car and fell in the garage. And this guy just let me have my fit. He was there to help if I needed it but he didn't coddle or correct me. He tried to stop my fall and then just let me cry it out. He watched me crawl back inside and to the couch and just let me have my fit. No judgement from this guy. Just the space I needed and help when I wanted.
So this guy, I think he is OK. I think we have been through a lot of strange and hard things and this will be just one more chapter. This guy is pretty used to the strangeness that is me, and even though we don't always make it work most of the time we can.
This guy. He has my back. (and my heart)
These are ER selfies while waiting for him to get stiches in a cut finger
Tuesday, September 24, 2019
What about the kids?
Well, my kids (ages 8 and 10) have started talking about my impending surgery at school. I guess I should have known this would happen but still, I wasn't ready for it.
I'm real open with my life at church. I tell it like it is and I share the truth about myself, what I am thinking and how I am feeling, all of the time. Its not like some super Pastor Heather show, but it is real and I don't hold back. I'm talking about my foot situation in Bible Study and from the pulpit and in conversations and here in this blog.
So . . . is it any wonder that my kids are doing the same thing? "What are you worried about in your life?" some unsuspecting teacher or counselor might ask. Only to be hit with "my mom is having her foot amputated in a few weeks." Jaws drop.
Sorry teachers and counselors and such. I guess I should have, could have, told you or warned you or given you a heads up. But, I've kind of had my plate full.
Today I sent an email to teachers and counselors and principal saying Yes this is going on at our house and here is the time frame and lets cross our fingers that the kids don't act out in their grief.
Because let's be honest, this is shitty for them too. Mom will be weird and grumpy and won't be able to do all the mom things like get us up and make our breakfast, lunch, and dinner and do our laundry and clean the house and change the sheets. And it means these two kids will need to step up and help with chores like they did last year when mom had surgery. And we know it will be months before mom has a prosthetic and so until then what does mom have? what does mom do?
And the question they aren't asking . . . why is this happening? Why is this happening to mom, and by extension to them? Its not fair, that's for sure.
Olivia and I talked a bit yesterday and she said she was worried about transportation. How was she going to get where she needed to go? Imagine her relief when I explained that I only need my right foot to drive, and I am keeping that foot. Silver linings all around!
So, school world and dance world and scout world and anywhere else where my kids may blurt out the dreaded "a" word (amputation) I am sorry I didn't give you a heads up. But it is true, we are doing this soon. So, if you could give my kids a little extra love I would appreciate it. Thanks.
I'm real open with my life at church. I tell it like it is and I share the truth about myself, what I am thinking and how I am feeling, all of the time. Its not like some super Pastor Heather show, but it is real and I don't hold back. I'm talking about my foot situation in Bible Study and from the pulpit and in conversations and here in this blog.
So . . . is it any wonder that my kids are doing the same thing? "What are you worried about in your life?" some unsuspecting teacher or counselor might ask. Only to be hit with "my mom is having her foot amputated in a few weeks." Jaws drop.
Sorry teachers and counselors and such. I guess I should have, could have, told you or warned you or given you a heads up. But, I've kind of had my plate full.
Today I sent an email to teachers and counselors and principal saying Yes this is going on at our house and here is the time frame and lets cross our fingers that the kids don't act out in their grief.
Because let's be honest, this is shitty for them too. Mom will be weird and grumpy and won't be able to do all the mom things like get us up and make our breakfast, lunch, and dinner and do our laundry and clean the house and change the sheets. And it means these two kids will need to step up and help with chores like they did last year when mom had surgery. And we know it will be months before mom has a prosthetic and so until then what does mom have? what does mom do?
And the question they aren't asking . . . why is this happening? Why is this happening to mom, and by extension to them? Its not fair, that's for sure.
Olivia and I talked a bit yesterday and she said she was worried about transportation. How was she going to get where she needed to go? Imagine her relief when I explained that I only need my right foot to drive, and I am keeping that foot. Silver linings all around!
So, school world and dance world and scout world and anywhere else where my kids may blurt out the dreaded "a" word (amputation) I am sorry I didn't give you a heads up. But it is true, we are doing this soon. So, if you could give my kids a little extra love I would appreciate it. Thanks.
Sunday, September 22, 2019
What I'm thinking about
Today is a good day. I am finally coming out of the chemo fog and feeling like myself again. I had plenty of energy for church. And even if I got confused, like I was so afraid I would on the chemo, I knew I could roll with it just fine.
I announced during prayers that I have stopped the chemo and opted for surgery. I have three Sundays after this one and then will miss 3-4 Sundays. I told them when I returned I would be in a wheelchair for a few months. I purposely neglected to say "amputation" from the pulpit. That word really scares people, so let those that have ears hear and the rest can catch up later.
Now that I am returning to life from out of the chemo fog I am so much more certain I am making the right decision. I have known in my heart that amputation was in the future for a long time now. This is a deep knowing. Pastor friends, this is a knowing like knowing I am called and knowing which church God is calling me to. I have had a knowing about amputation for months. Now that the decision is officially made, I feel at peace with my future.
I have realized that with this choice I will look different and I will move different but it will still be me. All my spunk, all my energy, and all the humor with which I approach life will all be there. In the chemo fog I lost those things, I lost myself. It was not a good path for me.
I know this is a strange and hard choice but I am thankful it is a choice I can make. Amputation is always an option for GCT in the ankle but it is so frightening that few people choose it. My DR has another patient with GCT in the ankle and she is choosing the new chemo that has led to liver failure. Good luck and prayers for her. That was so clearly not my choice. My DR has patients with GCT in the knee, hip, and shoulder and for these folks chemo for life is the only choice. So I feel lucky I have options, for me this is a blessing.
I'll share more about my thought process in the days to come. In the meantime imagine what you would do. You have three weeks left with your left foot, what needs to get done? I can tell you the list of things I want to get done is long, and I need to prepare the house for a new type of movement. Plus, how does one prepare their kids for such a change. Lots to think about. And some things will inevitably be left undone.
Friends, thank you so much for your prayers and words of encouragement. I avoided reading Facebook after I last posted because I was afraid. Last night I read my Facebook comments and felt so moved to know I am not the only person who thinks I can get through this. I think I can do it, and others think I can do it, so I must be able to do it. I will. I can. It will be ok. Thanks for holding me in your hearts. I will need it in the weeks and months to come. Love - H
I announced during prayers that I have stopped the chemo and opted for surgery. I have three Sundays after this one and then will miss 3-4 Sundays. I told them when I returned I would be in a wheelchair for a few months. I purposely neglected to say "amputation" from the pulpit. That word really scares people, so let those that have ears hear and the rest can catch up later.
Now that I am returning to life from out of the chemo fog I am so much more certain I am making the right decision. I have known in my heart that amputation was in the future for a long time now. This is a deep knowing. Pastor friends, this is a knowing like knowing I am called and knowing which church God is calling me to. I have had a knowing about amputation for months. Now that the decision is officially made, I feel at peace with my future.
I have realized that with this choice I will look different and I will move different but it will still be me. All my spunk, all my energy, and all the humor with which I approach life will all be there. In the chemo fog I lost those things, I lost myself. It was not a good path for me.
I know this is a strange and hard choice but I am thankful it is a choice I can make. Amputation is always an option for GCT in the ankle but it is so frightening that few people choose it. My DR has another patient with GCT in the ankle and she is choosing the new chemo that has led to liver failure. Good luck and prayers for her. That was so clearly not my choice. My DR has patients with GCT in the knee, hip, and shoulder and for these folks chemo for life is the only choice. So I feel lucky I have options, for me this is a blessing.
I'll share more about my thought process in the days to come. In the meantime imagine what you would do. You have three weeks left with your left foot, what needs to get done? I can tell you the list of things I want to get done is long, and I need to prepare the house for a new type of movement. Plus, how does one prepare their kids for such a change. Lots to think about. And some things will inevitably be left undone.
Friends, thank you so much for your prayers and words of encouragement. I avoided reading Facebook after I last posted because I was afraid. Last night I read my Facebook comments and felt so moved to know I am not the only person who thinks I can get through this. I think I can do it, and others think I can do it, so I must be able to do it. I will. I can. It will be ok. Thanks for holding me in your hearts. I will need it in the weeks and months to come. Love - H
Friday, September 20, 2019
I've made my decision
Our visit with the oncologist went well yesterday. There really are few options for me. We talked everything over again and I made clear that I was unhappy on the chemo. The more we talked the more it became clear to me that all of the treatment options are ways to delay or avoid amputation. Nothing is a solution for my tumor but amputation. So I am choosing amputation and my DR agrees.
Mom offered the minority report. She wanted to slow things down and try a lower dose of the chemo. She wants to buy more time. But I pointed out that it would not be good time. Time on chemo is sick time, not good time. I don't want anymore sick time. I don't want to stretch any of this out.
So, we have a date in mid October. There is an appointment in a few weeks with my surgeon to talk process and with the prosthetist to talk prosthetic options. I am awaiting a psychology appointment as well, since this isn't just about my body it is also about my mind.
Amputation in the abstract and amputation actually on the calendar are two very different things. I'll have more to say later. In the meantime, we have left the cone of uncertainty. We have a plan.
Mom offered the minority report. She wanted to slow things down and try a lower dose of the chemo. She wants to buy more time. But I pointed out that it would not be good time. Time on chemo is sick time, not good time. I don't want anymore sick time. I don't want to stretch any of this out.
So, we have a date in mid October. There is an appointment in a few weeks with my surgeon to talk process and with the prosthetist to talk prosthetic options. I am awaiting a psychology appointment as well, since this isn't just about my body it is also about my mind.
Amputation in the abstract and amputation actually on the calendar are two very different things. I'll have more to say later. In the meantime, we have left the cone of uncertainty. We have a plan.
Wednesday, September 18, 2019
The Cone of Uncertainty
Its hurricane season. Thankfully I don't live anywhere near the coast (and I pray for those who do) but the news is full of announcements about the "cone of uncertainty" and various "spaghetti models".
I certainly feel like I am living in a cone of uncertainty. I would like to see some spaghetti models of my future. Which way will the path of hurricane Giant Cell Tumor take?
Will it be chemo for life?
Is amputation in my near future?
Is there a chance for a more invasive surgery that still saves my foot and my ability to walk?
Is there a cure on the horizon?
Just where is this Giant Cell Tumor hurricane going to hit the hardest?
No way of knowing right now.
I was thinking yesterday about how much I am a person who wants to know what is on the horizon. I like to have a plan, to line things up, and to have life run in an orderly fashion. I can hear you laughing because we both know life doesn't work that way. But I really really try to make it do that. I really try to keep things flowing in good order with minimal surprises.
Hurricane Giant Cell Tumor is nothing but one big surprise. There is nowhere to go where I can escape the cone of uncertainty. There is no future where this tumor (or its treatment) are not a lasting part of my life. This hurricane is going to hit no matter what the spaghetti models are showing. I am standing in the path of destruction . . . at least for now.
Tomorrow we head back to my oncologist at the University of Kansas Cancer Center. I have a long list of questions that I have developed these last few weeks and I intend to ask them all. I am also aware that the chance of getting any good answers is slim. There isn't a lot of resolution here. There are no clear directions to take. And my Dr just might not know what the best path forward is.
See what I'm talking about? Cone of uncertainty.
I'll let you know what happens tomorrow.
(If only I had a magic hurricane moving sharpie!)
I certainly feel like I am living in a cone of uncertainty. I would like to see some spaghetti models of my future. Which way will the path of hurricane Giant Cell Tumor take?
Will it be chemo for life?
Is amputation in my near future?
Is there a chance for a more invasive surgery that still saves my foot and my ability to walk?
Is there a cure on the horizon?
Just where is this Giant Cell Tumor hurricane going to hit the hardest?
No way of knowing right now.
I was thinking yesterday about how much I am a person who wants to know what is on the horizon. I like to have a plan, to line things up, and to have life run in an orderly fashion. I can hear you laughing because we both know life doesn't work that way. But I really really try to make it do that. I really try to keep things flowing in good order with minimal surprises.
Hurricane Giant Cell Tumor is nothing but one big surprise. There is nowhere to go where I can escape the cone of uncertainty. There is no future where this tumor (or its treatment) are not a lasting part of my life. This hurricane is going to hit no matter what the spaghetti models are showing. I am standing in the path of destruction . . . at least for now.
Tomorrow we head back to my oncologist at the University of Kansas Cancer Center. I have a long list of questions that I have developed these last few weeks and I intend to ask them all. I am also aware that the chance of getting any good answers is slim. There isn't a lot of resolution here. There are no clear directions to take. And my Dr just might not know what the best path forward is.
See what I'm talking about? Cone of uncertainty.
I'll let you know what happens tomorrow.
(If only I had a magic hurricane moving sharpie!)
Tuesday, September 17, 2019
Hanging in There
So this whole journey continues to be a learning process for me. I am learning what to say, and mostly what not to say to people who are in periods of suffering in their lives. I am also learning what to say about my own suffering.
Sundays are hard. For an introvert who is a pastor who is passionate about dynamic and meaningful worship Sundays are always hard. For an introvert pastor on chemo Sundays are the worst. I am already scraping bottom and now I need to pull out all the stops. I got nothing, but I need to come up with something because it is Sunday morning and (Lord have mercy) there are visitors out there so I better make this look good.
Everyone asks me how I am on Sundays, which is natural. They want to know how I am. And if you know me you know I am honest to a fault. Well, that is a bad combination on Sunday morning. "How are you?" "ughh . . .blerg" (think guttural noise with a frown) I make it clear I am not good and then the person who asks is upset. They really want me to feel better, or they really need me to be able to perform because its Sunday morning, or probably both. And we both end up feeling bad.
Because the thing is, I'm not going to get better. According to this path I am not going to ever get off chemo or get used to chemo or get better. I'm going to feel bad for a long time. That's just the way it is.
And so Sunday I realized I can't just say "ughh . . . blerg" when folks ask me how I am. So what do I say? Do I lie and say "I am fine". That was my first instinct. But that's a terrible idea because we would both know I was lying and I hate lying because I am such a terrible liar.
My mother suggested I say "I'm coping" but I don't like that either. That suggests I have everything under control and I most certainly do not have everything under control. I am not coping.
And then my church secretary had the best answer. She asked me on Monday (she's a non-church goer) "are you hanging in there?" and I thought, that's perfect! "Yes, I am hanging in there" Like that stupid cat on the poster I am hanging in there.
I am about to fall, I totally don't have it under control, I am not coping, I am "ughh . . . blerg", and I am hanging in there. Just like that cat. I might get back in the tree or I might plunge to the ground at any moment, but I sure look like I am going to fall.
Hanging in there. That's how I am. And now I have something true to say. "How are you?" "Hanging in there"
Sundays are hard. For an introvert who is a pastor who is passionate about dynamic and meaningful worship Sundays are always hard. For an introvert pastor on chemo Sundays are the worst. I am already scraping bottom and now I need to pull out all the stops. I got nothing, but I need to come up with something because it is Sunday morning and (Lord have mercy) there are visitors out there so I better make this look good.
Everyone asks me how I am on Sundays, which is natural. They want to know how I am. And if you know me you know I am honest to a fault. Well, that is a bad combination on Sunday morning. "How are you?" "ughh . . .blerg" (think guttural noise with a frown) I make it clear I am not good and then the person who asks is upset. They really want me to feel better, or they really need me to be able to perform because its Sunday morning, or probably both. And we both end up feeling bad.
Because the thing is, I'm not going to get better. According to this path I am not going to ever get off chemo or get used to chemo or get better. I'm going to feel bad for a long time. That's just the way it is.
And so Sunday I realized I can't just say "ughh . . . blerg" when folks ask me how I am. So what do I say? Do I lie and say "I am fine". That was my first instinct. But that's a terrible idea because we would both know I was lying and I hate lying because I am such a terrible liar.
My mother suggested I say "I'm coping" but I don't like that either. That suggests I have everything under control and I most certainly do not have everything under control. I am not coping.
And then my church secretary had the best answer. She asked me on Monday (she's a non-church goer) "are you hanging in there?" and I thought, that's perfect! "Yes, I am hanging in there" Like that stupid cat on the poster I am hanging in there.
I am about to fall, I totally don't have it under control, I am not coping, I am "ughh . . . blerg", and I am hanging in there. Just like that cat. I might get back in the tree or I might plunge to the ground at any moment, but I sure look like I am going to fall.
Hanging in there. That's how I am. And now I have something true to say. "How are you?" "Hanging in there"
Friday, September 13, 2019
Today is a good day
Lest you think everyday is a bad day, I thought I'd tell you that today is a good day. I woke up feeling OK (by the new standards of OK) and was able to take Candie on our normal walk. Yesterday I was too tired so we just went around the block.
There seems to be a pretty direct correlation between nights I have to stay up and work and feeling bad the next day. When I got home from work yesterday afternoon I was done for the day so today I am feeling better.
This is my day off, so I am happy to run errands and get things done at my own pace. If I didn't have to work or mother I could totally do this. But of course, there is only one day like this a week.
I am looking forward to the weekend. We are moving furniture around (dumb I know) but I am getting my own quilt room downstairs. The quilt dungeon. (so excited!) It is good to have a project to work on (at my own pace) and something to look forward to.
Hope its a blessed weekend for you. Thanks for your prayers which keep me going. Love - H
There seems to be a pretty direct correlation between nights I have to stay up and work and feeling bad the next day. When I got home from work yesterday afternoon I was done for the day so today I am feeling better.
This is my day off, so I am happy to run errands and get things done at my own pace. If I didn't have to work or mother I could totally do this. But of course, there is only one day like this a week.
I am looking forward to the weekend. We are moving furniture around (dumb I know) but I am getting my own quilt room downstairs. The quilt dungeon. (so excited!) It is good to have a project to work on (at my own pace) and something to look forward to.
Hope its a blessed weekend for you. Thanks for your prayers which keep me going. Love - H
Thursday, September 12, 2019
Well, that was embarassing
Yesterday was an all around bad day. I knew it would be. Got the kids to the Dr for check ups and everyone is doing well. They were troopers with mom in the waiting room. I wore a face mask so I wouldn't catch whatever was floating around in there. Don't know what's happening with my white blood cells right now but I'm going to guess it isn't good. Kids did well ignoring the stares of strangers. "Wow, you're sick" their eyes say. "No" I think, "you're sick and I can't catch it." I know I looked weird but I am trying really hard to stay healthy. And like I said, kids just rolled with it. They're troopers.
If that was all that was on the plate I could have made it through the day. My mom fed us and while she finished dinner I had a chance to lay down and rest. There is just no time to rest. The pharmacist from the Cancer Center called yesterday to check on some other side effects I'm having (which you're glad I'm not sharing here) and gasped when I said how much I am working. What do they expect? We're trying this on for life right? I need to know if I can do this forever, not how many sick days I can take.
Anyway, we had Session last night and COM was here because I had previously been making a fuss about their complete neglect of tri-annual visits. Presby people know what I'm talking about. When the meeting opens at 6:30 I am so profoundly tired I cannot open my eyes. Literally, I am falling asleep sitting at the table. I listen to folks check-in and I cannot keep my eyes open. Finally my turn to check-in and I try to explain how tired I am and how I am totally listening but I can't open my eyes and instead of allowing me to talk my stupid body starts crying. I was mortified.
Women in ministry know what a "no-no" crying is. It is just such a cudgel used to bludgeon us when we accidently let it slip. Being a woman in a man's job is a challenge and crying is the absolute worst thing you can do. Ugh. It would be one thing if it was just my people, they know me and they know I don't cry. But COM was there, strangers were there who had come to judge us, and I was beyond embarrassed. It was the worst ever.
Within an hour or so I had energy back and could participate fully but the mistake was there. I know I couldn't control it and yes everyone understands but that doesn't make it OK. Like a cup too full of water, my tears just slosh out. I can't help it. And I am so tired. So, so tired. There is nothing of me left.
Next week we finally go back to the oncologist and I am going to be really clear. I can't live like this. I can't parent and I can't pastor and I can't live. This chemo has scraped away all my insides and I am just a shell. I have nothing.
If this will shrink the tumor so we can cut it out fine, I'll stay on it for a little longer. But we have to lower the dose. If that is not an option then get me the hell off this shit. You can have my foot. I just want my life back.
Olivia being a trooper.
If that was all that was on the plate I could have made it through the day. My mom fed us and while she finished dinner I had a chance to lay down and rest. There is just no time to rest. The pharmacist from the Cancer Center called yesterday to check on some other side effects I'm having (which you're glad I'm not sharing here) and gasped when I said how much I am working. What do they expect? We're trying this on for life right? I need to know if I can do this forever, not how many sick days I can take.
Anyway, we had Session last night and COM was here because I had previously been making a fuss about their complete neglect of tri-annual visits. Presby people know what I'm talking about. When the meeting opens at 6:30 I am so profoundly tired I cannot open my eyes. Literally, I am falling asleep sitting at the table. I listen to folks check-in and I cannot keep my eyes open. Finally my turn to check-in and I try to explain how tired I am and how I am totally listening but I can't open my eyes and instead of allowing me to talk my stupid body starts crying. I was mortified.
Women in ministry know what a "no-no" crying is. It is just such a cudgel used to bludgeon us when we accidently let it slip. Being a woman in a man's job is a challenge and crying is the absolute worst thing you can do. Ugh. It would be one thing if it was just my people, they know me and they know I don't cry. But COM was there, strangers were there who had come to judge us, and I was beyond embarrassed. It was the worst ever.
Within an hour or so I had energy back and could participate fully but the mistake was there. I know I couldn't control it and yes everyone understands but that doesn't make it OK. Like a cup too full of water, my tears just slosh out. I can't help it. And I am so tired. So, so tired. There is nothing of me left.
Next week we finally go back to the oncologist and I am going to be really clear. I can't live like this. I can't parent and I can't pastor and I can't live. This chemo has scraped away all my insides and I am just a shell. I have nothing.
If this will shrink the tumor so we can cut it out fine, I'll stay on it for a little longer. But we have to lower the dose. If that is not an option then get me the hell off this shit. You can have my foot. I just want my life back.
Olivia being a trooper.
Wednesday, September 11, 2019
Liminal Space
Pastors sometimes like to throw around big words and one of those words is liminal space. Liminal space is an intermediate or transitional space. It is a place on the threshold of two different things but not really any one of those things. Its an inbetween space, like the space between death and life, or how the kingdom of God is already here and not yet happening. Liminal space.
My life exists totally in liminal space right now. The chemo I take everyday is poisoning not just my tumor but my body as well. It is robbing me of life, but not killing me. It is forcing me into a grey area where I live on the margins of my old life.
Every morning I wake up feeling bad. I feel like you might feel when you are coming down with the flu. I am achy, tired, and my stomach is upset. But I never get sick. I am always coming down with something. But I never get sick. And I never get better. Each morning I wake up and I am so sad to be here again, another day, in this awful grey space. Not dying, not sick, but not living either.
Today is another bad day. I think I did too much yesterday and I am paying the price. And there is so much today that has to be done. Kids need to go to the doctor for check ups (I'm only three or so years behind) and that will mean waiting forever in the waiting room with a face mask so I don't get sick. And Session is tonight, with COM coming (finally) but that will mean long, tense discussions keeping me way up past my bed time and past my peak energy time. I am dreading every bit of this day.
But then the day will be over. Tomorrow will be a new day, with its own to-do lists and struggles and still feeling bad but at least it will be tomorrow. I try to find hope wherever I can.
And flowers, today and yesterday there have been flowers. And they always seem to make the world a brighter place, don't they? They at least remind me that even though I am wilting right now, I can't wilt forever. One day I will bloom bright again. At least I hope so. The longer I take this chemo the more I become convinced that I can't live in this liminal space forever. I just can't.
Happy Flowers
My life exists totally in liminal space right now. The chemo I take everyday is poisoning not just my tumor but my body as well. It is robbing me of life, but not killing me. It is forcing me into a grey area where I live on the margins of my old life.
Every morning I wake up feeling bad. I feel like you might feel when you are coming down with the flu. I am achy, tired, and my stomach is upset. But I never get sick. I am always coming down with something. But I never get sick. And I never get better. Each morning I wake up and I am so sad to be here again, another day, in this awful grey space. Not dying, not sick, but not living either.
Today is another bad day. I think I did too much yesterday and I am paying the price. And there is so much today that has to be done. Kids need to go to the doctor for check ups (I'm only three or so years behind) and that will mean waiting forever in the waiting room with a face mask so I don't get sick. And Session is tonight, with COM coming (finally) but that will mean long, tense discussions keeping me way up past my bed time and past my peak energy time. I am dreading every bit of this day.
But then the day will be over. Tomorrow will be a new day, with its own to-do lists and struggles and still feeling bad but at least it will be tomorrow. I try to find hope wherever I can.
And flowers, today and yesterday there have been flowers. And they always seem to make the world a brighter place, don't they? They at least remind me that even though I am wilting right now, I can't wilt forever. One day I will bloom bright again. At least I hope so. The longer I take this chemo the more I become convinced that I can't live in this liminal space forever. I just can't.
Happy Flowers
Monday, September 9, 2019
Every day I walk
I used to walk all the time. It is one of my favorite activities and my only good source of exercise. Before I was on this chemo I would put the kids on the bus and then take my dog Candie for a walk. Down we go to the end of the trail and then turn back. Its about a mile. Before I got sick she and I would double the route on weekends, days when I didn't have to get home and get right to the office on time. Walking was easy. It was light and freeing and I always felt like I could go farther and do more.
I still walk every day. Candie is ready and we go each morning. But now I am so tired. Walking on the asphalt trail feels like walking in mud or walking under water. Each step takes so much more effort. Each walk is so much harder than it used to be.
I try to ignore my aching body and the little voice inside my head which tells me I should just lay down on the asphalt and rest awhile. Candie doesn't mind if we have a slower pace. And as I ignore my oppressive fatigue I try to notice everything outside myself.
I never take my phone when I walk. No music or podcasts. Just me and the birds and the bugs. And of course, Candie. I love to listen to the sound of my breath and Candie's breath together. And I look and look for the beauty of the world. The dew on the morning grass, the tiny spider webs that dot the lawn in hopes of a future meal, the golden leaves shimmering as they fall from a tree, the little snail that makes his own labored journey. We are all there together, nature and I, and I am sure I am not the only creature out there who might not be feeling their best today.
I walk every day. I refuse to give up. It's a lot harder then it used to be - but still I go.
Plus - this girl is always ready to go with me.
I still walk every day. Candie is ready and we go each morning. But now I am so tired. Walking on the asphalt trail feels like walking in mud or walking under water. Each step takes so much more effort. Each walk is so much harder than it used to be.
I try to ignore my aching body and the little voice inside my head which tells me I should just lay down on the asphalt and rest awhile. Candie doesn't mind if we have a slower pace. And as I ignore my oppressive fatigue I try to notice everything outside myself.
I never take my phone when I walk. No music or podcasts. Just me and the birds and the bugs. And of course, Candie. I love to listen to the sound of my breath and Candie's breath together. And I look and look for the beauty of the world. The dew on the morning grass, the tiny spider webs that dot the lawn in hopes of a future meal, the golden leaves shimmering as they fall from a tree, the little snail that makes his own labored journey. We are all there together, nature and I, and I am sure I am not the only creature out there who might not be feeling their best today.
I walk every day. I refuse to give up. It's a lot harder then it used to be - but still I go.
Plus - this girl is always ready to go with me.
Thursday, September 5, 2019
So that we can all do better
Or . . . why I am writing this blog
I have several selfish reasons for writing this blog.
1. I love to write and now I have something interesting to write about
2. I want those from past lives and experiences to pray for me if they are the praying type
3. I will need a cheering squad when I am learning to walk again (if amputation is in the future)
But the main reason I am writing this blog is so that we can all do better. All of us want to offer the best love and care we can for those we know who are suffering with illness. I know in all the years I've been in ministry (coming up on 13 now) I have walked with tons of people through times of suffering. There have been friends and loved ones with terrible diagnoses, terrible grief and loss in the family, and even journeys all the way to death where loved ones move on without me. Having my own experience of illness is opening my eyes to the ways I offer care for others.
Many of my friends are other clergy and we are always striving to give the best care we can. But when something happens to us, our perspective changes. I recently had a clergy colleague die, and as he was approaching death he had some fresh insights. I had thought of those things before (duh!) but still, they were powerful things for him. Maybe you will have already realized all the things I am currently learning (duh!). If so, good for you. But we could all do better.
I had no idea that the most difficult part about my diagnosis would not be how I felt about it, it would be how other people felt. The care and concern of those around me is such a weight and a burden. The love everyone has feels heavy, not light. It takes way more energy for me to deal with everyone else's grief around my diagnosis then to deal with my own. I didn't know it would be like this.
Now I know when I am around someone who is suffering, I want to give them so much more space. Just let them talk about how they are feeling, their own fears and concerns. Or not talk about it at all. I love the weekends at home because we don't talk about my foot, unlike the work week where it comes up in nearly every meeting. I am learning that the best way to offer support is to offer space. And we could all do better.
If you find yourself here in this blog, please do not take offense. You are certainly not the only person to have offered advice (love), told me to look for a second opinion (hope), or asked me about my foot (care) when I didn't really want to talk about it. We have all made these mistakes, me included. And we can all do better.
My hope here is to share my authentic experience of illness. And my insights as one who so often offers comfort and care into all the ways I can do that better in the future. We can all do better, but only if we share our honest truths with each other.
In other news . . . My foot hurts more today but my stomach hurts less. I think that's a good thing.
Love to all and thanks for your sweet and caring love for me. God is with us and we always have a chance to do better as we express our love for each other.
Wednesday, September 4, 2019
The myth of the second opinion
It's hard to balance the weight of everyone's hope and advice. One thing I hear more than anything else is that I need to get a second opinion. This is a hard one, as there really is no second opinion for me. I know I have TGCT-TS and I know there is no cure. So what is the second opinion? There is no doctor out there that has a magical answer. There is no path I can go down where I don't have this disease.
In case you are wondering, let's review facts.
1. My diagnosis is sure. Remember, I was diagnosed September of 2018 with TGCT-TS in my left ankle. The surgeon removed the tumor to the best of his ability. The tumor was tested in the operating room to confirm the diagnosis, and then later the entire tumor was tested in the pathology lab. All results show this is a Giant Cell Tumor. I think the primary purpose of a second opinion is to seek an alternative diagnosis. At this point, I would not trust anyone who claims I don't have TGCT-TS. Especially since the tumor has quickly grown back, as it would if it was TGCT-TS.
2. Treatment options. I have already seen two doctors. My surgeon and my oncologist. The oncologist made all the options very clear to me, and they are as follows.
a. do nothing
b. try Gleevec (a chemo) to shrink the tumor. This chemo was designed for leukemia patients but there has been some success treating giant cell tumors. (This is what I am on)
c. try Turalio a new chemo that was just approved last month. This chemo was designed specifically for giant cell tumors but is very hard on the liver. Some patients in the clinical trials needed liver transplants and some even died from liver failure. I need my liver (hello wine) so this is a firm no for me.
d. get in an immunotherapy clinical trial. There are clinical trials looking for giant cell tumor patients to try immunotherapy right now. Immunotherapy works by stimulating the patient's own immune system and often results in immune diseases as a side effect. Not a risk I am willing to take when there is no known results.
e. amputation
These are the only, I repeat ONLY options. I have joined online groups and read the stories of other people suffering from this disease and no one is anywhere where doctors are doing anything different or where they have a cure. There is no cure for this condition.
The only option not listed is to try another surgeon. Maybe they could successfully remove the full tumor. You need to get EVERY little cell or my tumor will rapidly grow back. I will be asking the oncologist about this when I see him in a few weeks.
But you see, this idea that there is another answer out there, that there is another opinion, is just not real. There is nothing else out there for me or for anyone else with this disease. And when people keep asking me why I haven't done more its painful. Like somehow I haven't done enough or thought this through or searched hard enough. Like somehow because all the futures are negative that this is my own fault. Like I have given up on myself by accepting this reality. If only I could find that mythical second opinion. I wish it was out there. But I am convinced its not.
In other news . . . today is a hard day. I woke up feeling so sick. And its hard to get up and get kids fed and off to school. To trudge into the office and try to conjure a sermon from my foggy brain. I took a morning Zofran (a first) to help my tummy but it makes me tired. And chemo makes me tired. And I'm sad. Sad and tired.
Oh well. I just have to keep going.
In case you are wondering, let's review facts.
1. My diagnosis is sure. Remember, I was diagnosed September of 2018 with TGCT-TS in my left ankle. The surgeon removed the tumor to the best of his ability. The tumor was tested in the operating room to confirm the diagnosis, and then later the entire tumor was tested in the pathology lab. All results show this is a Giant Cell Tumor. I think the primary purpose of a second opinion is to seek an alternative diagnosis. At this point, I would not trust anyone who claims I don't have TGCT-TS. Especially since the tumor has quickly grown back, as it would if it was TGCT-TS.
2. Treatment options. I have already seen two doctors. My surgeon and my oncologist. The oncologist made all the options very clear to me, and they are as follows.
a. do nothing
b. try Gleevec (a chemo) to shrink the tumor. This chemo was designed for leukemia patients but there has been some success treating giant cell tumors. (This is what I am on)
c. try Turalio a new chemo that was just approved last month. This chemo was designed specifically for giant cell tumors but is very hard on the liver. Some patients in the clinical trials needed liver transplants and some even died from liver failure. I need my liver (hello wine) so this is a firm no for me.
d. get in an immunotherapy clinical trial. There are clinical trials looking for giant cell tumor patients to try immunotherapy right now. Immunotherapy works by stimulating the patient's own immune system and often results in immune diseases as a side effect. Not a risk I am willing to take when there is no known results.
e. amputation
These are the only, I repeat ONLY options. I have joined online groups and read the stories of other people suffering from this disease and no one is anywhere where doctors are doing anything different or where they have a cure. There is no cure for this condition.
The only option not listed is to try another surgeon. Maybe they could successfully remove the full tumor. You need to get EVERY little cell or my tumor will rapidly grow back. I will be asking the oncologist about this when I see him in a few weeks.
But you see, this idea that there is another answer out there, that there is another opinion, is just not real. There is nothing else out there for me or for anyone else with this disease. And when people keep asking me why I haven't done more its painful. Like somehow I haven't done enough or thought this through or searched hard enough. Like somehow because all the futures are negative that this is my own fault. Like I have given up on myself by accepting this reality. If only I could find that mythical second opinion. I wish it was out there. But I am convinced its not.
In other news . . . today is a hard day. I woke up feeling so sick. And its hard to get up and get kids fed and off to school. To trudge into the office and try to conjure a sermon from my foggy brain. I took a morning Zofran (a first) to help my tummy but it makes me tired. And chemo makes me tired. And I'm sad. Sad and tired.
Oh well. I just have to keep going.
Sunday, September 1, 2019
400 milligrams of moxie
I'm doing well, considering.
No really! Lots of folks in the online PVNS forums can't tolerate 400mg of Gleevec which is the chemo I am on, but I think I am tolerating it pretty well. I give the credit to all the folks out there praying for me. We might not be able to erase the tumor with prayer but your love and support sure help me shoulder the burden of treatment.
My stomach aches are at a minimum and the headaches also are less. I am just tired, and a bit confused. The kids joke that I have "brain loss" which is funny. Jokes are all I have to hold on to, and I really want to laugh and smile right now.
But I really do have trouble doing things like I used to. For example every morning I follow the same routine to shower and get ready for my day. Every morning the exact routine. (OCD much?) Well, this week I did my routine wrong. I got confused and I forgot what I was doing.
And at church today I had trouble reading out loud. I misspoke reading the Bible several times in Sunday school and during the sermon. Luckily I am a manuscript preacher so I have something to hold on to in the pulpit, but if you see me looking down more often that's why.
On the whole, I am just muted and tired. Its like someone turned down the volume knob on my life. The grey days don't help. Don't get me wrong, I love the rain, but its like the whole world has dimmed just a bit in sync with my tired body/brain.
It's like I've lost some of my glow, my spark, my ray of hope and sunshine. Its like I've lost some of my moxie. About 400 mg of moxie to be exact.
No really! Lots of folks in the online PVNS forums can't tolerate 400mg of Gleevec which is the chemo I am on, but I think I am tolerating it pretty well. I give the credit to all the folks out there praying for me. We might not be able to erase the tumor with prayer but your love and support sure help me shoulder the burden of treatment.
My stomach aches are at a minimum and the headaches also are less. I am just tired, and a bit confused. The kids joke that I have "brain loss" which is funny. Jokes are all I have to hold on to, and I really want to laugh and smile right now.
But I really do have trouble doing things like I used to. For example every morning I follow the same routine to shower and get ready for my day. Every morning the exact routine. (OCD much?) Well, this week I did my routine wrong. I got confused and I forgot what I was doing.
And at church today I had trouble reading out loud. I misspoke reading the Bible several times in Sunday school and during the sermon. Luckily I am a manuscript preacher so I have something to hold on to in the pulpit, but if you see me looking down more often that's why.
On the whole, I am just muted and tired. Its like someone turned down the volume knob on my life. The grey days don't help. Don't get me wrong, I love the rain, but its like the whole world has dimmed just a bit in sync with my tired body/brain.
It's like I've lost some of my glow, my spark, my ray of hope and sunshine. Its like I've lost some of my moxie. About 400 mg of moxie to be exact.
Friday, August 30, 2019
Blerg
Blerg.
That's how I feel.
Blerg.
I'm two days into my oral chemo regimen. Can't complain really. Day one was nausea and general fatigue and fogginess. Like the day after drinking too much without the party. Blerg.
Day two I tried the Zofran at night and woke up with a headache. Great! We're doing all the hangover symptoms now. Blerg.
The plan (as if there could be a plan) is to try this for three months and see if the tumor responds. No way I could do this forever! After that we will have to decide. Surgery again? Or can you cut the tendon and then cut the tumor out then? If we get all the cells it might be gone forever but you can't get the tumor because its wrapped around the tendon. Or do we just amputate? Hard to say. Need to see what the chemo does.
Folks keep waiting for me to get upset. To yell or scream or curse or just lose it. But I don't have it in me. Maybe I am just cynical. Maybe I have seen too much in this world to feel sorry for myself. Life is so much worse for so many other people. Even with my evil benign tumor I still have it pretty good.
Yesterday I was explaining my outlook to a friend. I said "there is no future where I don't have this or don't have to suffer. Every future outlook is scary. I can either be OK with it or moan and groan. The only thing I have control over is my outlook. I think I'm ok." "Yes," she said, "but you don't have to be ok. I know you CAN do it, but you don't HAVE TO do it."
Hmm, I thought. Maybe I should feel sorry for myself. I got into my car and contemplated driving to the lake to cry alone a bit.
No, I don't have it in me.
And then I went home to clean the house.
Blerg.
That's how I feel.
Blerg.
I'm two days into my oral chemo regimen. Can't complain really. Day one was nausea and general fatigue and fogginess. Like the day after drinking too much without the party. Blerg.
Day two I tried the Zofran at night and woke up with a headache. Great! We're doing all the hangover symptoms now. Blerg.
The plan (as if there could be a plan) is to try this for three months and see if the tumor responds. No way I could do this forever! After that we will have to decide. Surgery again? Or can you cut the tendon and then cut the tumor out then? If we get all the cells it might be gone forever but you can't get the tumor because its wrapped around the tendon. Or do we just amputate? Hard to say. Need to see what the chemo does.
Folks keep waiting for me to get upset. To yell or scream or curse or just lose it. But I don't have it in me. Maybe I am just cynical. Maybe I have seen too much in this world to feel sorry for myself. Life is so much worse for so many other people. Even with my evil benign tumor I still have it pretty good.
Yesterday I was explaining my outlook to a friend. I said "there is no future where I don't have this or don't have to suffer. Every future outlook is scary. I can either be OK with it or moan and groan. The only thing I have control over is my outlook. I think I'm ok." "Yes," she said, "but you don't have to be ok. I know you CAN do it, but you don't HAVE TO do it."
Hmm, I thought. Maybe I should feel sorry for myself. I got into my car and contemplated driving to the lake to cry alone a bit.
No, I don't have it in me.
And then I went home to clean the house.
Blerg.
Wednesday, August 28, 2019
Chemo Day
Its Chemo day.
This morning mom and I went to the Cancer Center for my "Oral Teach". This is when you meet with the pharmacist and the nurse to talk about all the awful ways your medicine will make you sick. Nausea, diarrhea, rash, fatigue, and edema are the top hits for this drug. Good times.
My personal favorite is the part where they warn you not to let anyone else touch your meds. And make sure you wash you hands after you take your pill. Don't take your pill and then touch your kids. I'm serious. Don't touch the meds and then touch anyone else. And I'm putting this in my body?? Gah!
How long till we see if its working or not? Maybe two months. Mom asks how long I will be taking it and the answer is silence. Crickets. People who have Leukemia have success with this med. We don't see many folks like you. Welcome to rare disease land friends. Finally the pharmacist suggests a year and then we look at surgery again. They don't know.
We had lunch out at Jack Stack BBQ and that was my last rich, fatty, glorious meal for the foreseeable future. Goodbye tasty . . . hello salads and water. Tonight it will be a simple dinner with chemo for dessert. Wish me luck friends!
This is what $11,500 worth of medicine looks like
I can't wait (sarcasm)
Tuesday, August 27, 2019
I have TGCT-TS
I have Tenosynovial giant cell tumor (TGCT) of the tendon sheath (TS) also called pigmented villondular synovitis (PVNS) and I am guessing unless you have this disease I am the only person you know who has it. This is on the rare diseases list. The medical description of this disease is as follows . . .
"TGCT is a type of non-malignant tumor occurring in or around a joint that can reduce function and cause damage to neighboring tissues. One type of TGCT is called localized; this type is often cured with one surgery. After it is removed, localized TGCT may come back, or recur, about 15% of the time. The more challenging—and less common—type of TGCT is called diffuse; this type can be harder to treat and is more likely to recur. After it is removed, diffuse TGCT may grow back in 20% to 50% of people. If TGCT recurs, it can result in multiple surgeries and damage to the affected joints over time."
The good news is that I have localized TGCT. The bad news is that even though my tumor is confined to one area, that area is hard to get to. My tumor is in my left ankle and is wrapped around my tendon like a snake. You can't reach it in surgery.
How do I know? We tried. Last fall when we finally diagnosed the pain and swelling in my ankle, I had surgery to remove the tumor. Once he was inside my ankle the doctor was disappointed to discover just how my tumor was positioned. He hoped he got it all . . . but he didn't. MRIs show that in just 10 months my tumor grew back to its original size. We aren't even a year out of surgery and I already have pain walking. Its a bummer.
Technically this tumor is not cancer as it will not kill me. My localized tumor will not spread. (thanks be to God because lots of folks have it way worse) But my tumor is VERY aggressive and it grows VERY fast. The bad news is that at this point there is no cure for TGCT. Its a lifetime of surgeries or medication. And the medication is nasty . . . chemo.
The other option for me, because my tumor is localized is amputation. That is something I am seriously considering. If I amputate, then I would be rid of this tumor. Imagine what you would choose . . . chemo for life (address growth but won't cure) or the amputation (gets the tumor out for good). I know which way I am headed.
This blog is a place for me to reflect on my experience with this cancer like illness. The treatment at this point is to give chemo a try. We will see how it goes. Thanks for your love and support.
- Heather
"TGCT is a type of non-malignant tumor occurring in or around a joint that can reduce function and cause damage to neighboring tissues. One type of TGCT is called localized; this type is often cured with one surgery. After it is removed, localized TGCT may come back, or recur, about 15% of the time. The more challenging—and less common—type of TGCT is called diffuse; this type can be harder to treat and is more likely to recur. After it is removed, diffuse TGCT may grow back in 20% to 50% of people. If TGCT recurs, it can result in multiple surgeries and damage to the affected joints over time."
The good news is that I have localized TGCT. The bad news is that even though my tumor is confined to one area, that area is hard to get to. My tumor is in my left ankle and is wrapped around my tendon like a snake. You can't reach it in surgery.
How do I know? We tried. Last fall when we finally diagnosed the pain and swelling in my ankle, I had surgery to remove the tumor. Once he was inside my ankle the doctor was disappointed to discover just how my tumor was positioned. He hoped he got it all . . . but he didn't. MRIs show that in just 10 months my tumor grew back to its original size. We aren't even a year out of surgery and I already have pain walking. Its a bummer.
Technically this tumor is not cancer as it will not kill me. My localized tumor will not spread. (thanks be to God because lots of folks have it way worse) But my tumor is VERY aggressive and it grows VERY fast. The bad news is that at this point there is no cure for TGCT. Its a lifetime of surgeries or medication. And the medication is nasty . . . chemo.
The other option for me, because my tumor is localized is amputation. That is something I am seriously considering. If I amputate, then I would be rid of this tumor. Imagine what you would choose . . . chemo for life (address growth but won't cure) or the amputation (gets the tumor out for good). I know which way I am headed.
This blog is a place for me to reflect on my experience with this cancer like illness. The treatment at this point is to give chemo a try. We will see how it goes. Thanks for your love and support.
- Heather
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