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.
deck
Friday, August 30, 2019
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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