Wednesday
"Excuse me Paul -- I'm having a problem with this
This credo -- My T-cells are low --
I regret that news, okay?
Alright
But CARLA - How do you feel today?
What do you mean?
How do you feel today?
Okay
Is that all?
BEST I'VE FELT ALL YEAR!
Then why choose fear?
I'm a CFer!
Fear's my life!
Look - I find some of what you teach suspect
Because I'm used to relying on intellect
But I try to open up to what I don't know
Because reason says I should have died
Three years ago
No other road
No other way
No day but today"
- Adapted from "Life Support" from Rent <3
Today I felt GREAT. Despite not sleeping much (I'm on an antibiotic for a sinus infection that keeps me awake... ALL. DAMN. NIGHT), I felt AMAZING. What not throwing up can do for you!!! Yesterday, after my asshole doc told me he wouldn't prescribe me the medication I logically should try, I called my PCP's office and got an appointment for today. I went in ready to fight. Ready to plead my case - logically lay out all the reasons trying the version of levothyroxine makes sense. I first talked to her about a couple minor issues, and then dove into my thyroid-vomit saga. The doc cut me off and asked where I would like to have the prescription sent. I explained how the other endocrine doc I saw yesterday for my bones did want to get involved because of "hospital politics." My doc immedicately said, "I don't care if I piss off a Froedtert doc; I don't work there. We're very pro-patient here."
And that's why I LOVE my PCP and her practice.
I mentioned to my PCP I had many labs done yesterday. I had 14 tubes of blood drawn, at Froedtert and my PCP sat and went through all the results with me because they hadn't yet resulted in MyChart yet.
...that's when I got my shittiest news of the day. And my PCP didn't even realize. I saw my TSH level was 100, meaning I need an increase - possibly a big increase - in my levothyroxine. I sighed, and was very thankful that she is allowing me to try the Tirosint. Hopefully, it won't make me sick.
Next, I asked to see my thyroglobulin level. Thyroglobulin indicates the level of thyroid tissue - or thyroid cancer - in the body. It's complicated, but the level should be zero. Before my radioactive iodine, mine was 150, and today it was 118. It should be zero. I knew right then that I will be facing more scans, more testing and probably more radioactive iodine.
I walked out of my PCP's office feeling so grateful for doctors who listen, and with a prescription in my pocket, and one on the way to my pharmacy. I felt... mostly happy. Despite knowing I might/probably still have cancer, I felt pretty good.
I've said this before, but LISTENING to a patient is so. damn. important. I live in this body every day. It is me and me alone that is violently retching and spewing every. damn. day. for months. It's me that is exhausted to the point of being unable to do anything requiring me to be awake before noon. My loved ones - mainly Dad and George - observe patterns more easily than a doctor who has never set foot in my house. So when I and my loved ones discuss something and I say, "Hey, we've observed..." that the doctor says, "Who's WE?" As if me and the people who are most often with me can't see patterns, can't know or talk to people who've been in similar situations. I usually say, "My dad, the DOCTOR and I have observed."
After my appointment, I went to Panera to simultaneously drown my sorrows and celebrate with food. I called my pharmacy to check on the Tirosint. I was pretty sure we would be paying out of pocket for it, at least until we prove it works better. I was skeptical Walgreens would stock it. But i was told it will be in stock tomorrow, with a copay of $3.25.
I cried. I was so relieved to not have to fight for one. more. thing, I broke down at a corner table at Panera. I let myself mourn the fact that I can't re-start my life cancer free - yet. A sudden fight came over me. I've always known I would get through thyroid cancer, but it SURE IS A PAIN IN THE ASS getting there. I picked my head up and put in my head phones to groove and dance while I ate my food. I put on a pick-me-up playlist and listened to it all afternoon.
I danced around to Lizzo on repeat.
I belted out "I do my hair toss / Check my nails / Baby how you feelin'?/ Feeling good as hell" as I tossed my hair and checked my nails. I danced and felt empowered. Lizzo has never really resonated with me until today; today I felt GOOD AS HELL.
"Come now, come dry your eyes
You know you a star, you can touch the sky
I know that it's hard but you have to try"
This credo -- My T-cells are low --
I regret that news, okay?
Alright
But CARLA - How do you feel today?
What do you mean?
How do you feel today?
Okay
Is that all?
BEST I'VE FELT ALL YEAR!
Then why choose fear?
I'm a CFer!
Fear's my life!
Look - I find some of what you teach suspect
Because I'm used to relying on intellect
But I try to open up to what I don't know
Because reason says I should have died
Three years ago
No other road
No other way
No day but today"
- Adapted from "Life Support" from Rent <3
Today I felt GREAT. Despite not sleeping much (I'm on an antibiotic for a sinus infection that keeps me awake... ALL. DAMN. NIGHT), I felt AMAZING. What not throwing up can do for you!!! Yesterday, after my asshole doc told me he wouldn't prescribe me the medication I logically should try, I called my PCP's office and got an appointment for today. I went in ready to fight. Ready to plead my case - logically lay out all the reasons trying the version of levothyroxine makes sense. I first talked to her about a couple minor issues, and then dove into my thyroid-vomit saga. The doc cut me off and asked where I would like to have the prescription sent. I explained how the other endocrine doc I saw yesterday for my bones did want to get involved because of "hospital politics." My doc immedicately said, "I don't care if I piss off a Froedtert doc; I don't work there. We're very pro-patient here."
And that's why I LOVE my PCP and her practice.
I mentioned to my PCP I had many labs done yesterday. I had 14 tubes of blood drawn, at Froedtert and my PCP sat and went through all the results with me because they hadn't yet resulted in MyChart yet.
...that's when I got my shittiest news of the day. And my PCP didn't even realize. I saw my TSH level was 100, meaning I need an increase - possibly a big increase - in my levothyroxine. I sighed, and was very thankful that she is allowing me to try the Tirosint. Hopefully, it won't make me sick.
Next, I asked to see my thyroglobulin level. Thyroglobulin indicates the level of thyroid tissue - or thyroid cancer - in the body. It's complicated, but the level should be zero. Before my radioactive iodine, mine was 150, and today it was 118. It should be zero. I knew right then that I will be facing more scans, more testing and probably more radioactive iodine.
I walked out of my PCP's office feeling so grateful for doctors who listen, and with a prescription in my pocket, and one on the way to my pharmacy. I felt... mostly happy. Despite knowing I might/probably still have cancer, I felt pretty good.
I've said this before, but LISTENING to a patient is so. damn. important. I live in this body every day. It is me and me alone that is violently retching and spewing every. damn. day. for months. It's me that is exhausted to the point of being unable to do anything requiring me to be awake before noon. My loved ones - mainly Dad and George - observe patterns more easily than a doctor who has never set foot in my house. So when I and my loved ones discuss something and I say, "Hey, we've observed..." that the doctor says, "Who's WE?" As if me and the people who are most often with me can't see patterns, can't know or talk to people who've been in similar situations. I usually say, "My dad, the DOCTOR and I have observed."
After my appointment, I went to Panera to simultaneously drown my sorrows and celebrate with food. I called my pharmacy to check on the Tirosint. I was pretty sure we would be paying out of pocket for it, at least until we prove it works better. I was skeptical Walgreens would stock it. But i was told it will be in stock tomorrow, with a copay of $3.25.
I cried. I was so relieved to not have to fight for one. more. thing, I broke down at a corner table at Panera. I let myself mourn the fact that I can't re-start my life cancer free - yet. A sudden fight came over me. I've always known I would get through thyroid cancer, but it SURE IS A PAIN IN THE ASS getting there. I picked my head up and put in my head phones to groove and dance while I ate my food. I put on a pick-me-up playlist and listened to it all afternoon.
I danced around to Lizzo on repeat.
I belted out "I do my hair toss / Check my nails / Baby how you feelin'?/ Feeling good as hell" as I tossed my hair and checked my nails. I danced and felt empowered. Lizzo has never really resonated with me until today; today I felt GOOD AS HELL.
"Come now, come dry your eyes
You know you a star, you can touch the sky
I know that it's hard but you have to try"
Why have I never listened to this song before? How did I randomly come across it today? Whoever or whatever it was that put that song in my life today, thank you.
"Woo girl, need to kick off your shoes
Got to take a deep breath, time to focus on you
All the big fights, long nights that you been through
I got a bottle of Tequila I been saving for you
Boss up and change your life
You can have it all, no sacrifice"
And while I don't drink Tequila, and I'm not currently pissed at a guy who's "done me wrong" (unless you count my doc), so many of these lines apply to me today. And that is how I'm doing. I'm feeling "Good as Hell."
Later in the afternoon or early evening, my thyroid cancer doctor called me to tell me what I already knew. I told him I had already seen my labs, and yet he, to use an over-used term, mansplained my labs to me. I knew what I was looking at. I knew I still have cancer or thyroid tissue and I will need more imaging. All he told me was I still have cancer or thyroid tissue and I need more imaging. Ugh.
After work, George picked up a cake for me on his way home. He picked up the cutest little carrot cake, that I called, "Carla Continues to Have Cancer Carrot Cake." It had white chocolate shavings on the frosting, and I loved it. It was a brilliant gesture; I loved it. George amazes me with his attitude about our life together. He tells me all the time, no matter what we encounter, we will conquer it - day by day, minute by minute if we have to, and always together. So, he got me a cake to cheer me up, even though I was already in pretty good spirits!
ALSO:
Deja Vu. Just a little side note, but today is bringing up feelings from when my CF doc fired me. I looked back, and it was January 31st, 2008. Dr. do Pico fired me for being "more-correct" than he was. *EYEROLL*
Got to take a deep breath, time to focus on you
All the big fights, long nights that you been through
I got a bottle of Tequila I been saving for you
Boss up and change your life
You can have it all, no sacrifice"
And while I don't drink Tequila, and I'm not currently pissed at a guy who's "done me wrong" (unless you count my doc), so many of these lines apply to me today. And that is how I'm doing. I'm feeling "Good as Hell."
Later in the afternoon or early evening, my thyroid cancer doctor called me to tell me what I already knew. I told him I had already seen my labs, and yet he, to use an over-used term, mansplained my labs to me. I knew what I was looking at. I knew I still have cancer or thyroid tissue and I will need more imaging. All he told me was I still have cancer or thyroid tissue and I need more imaging. Ugh.
After work, George picked up a cake for me on his way home. He picked up the cutest little carrot cake, that I called, "Carla Continues to Have Cancer Carrot Cake." It had white chocolate shavings on the frosting, and I loved it. It was a brilliant gesture; I loved it. George amazes me with his attitude about our life together. He tells me all the time, no matter what we encounter, we will conquer it - day by day, minute by minute if we have to, and always together. So, he got me a cake to cheer me up, even though I was already in pretty good spirits!
ALSO:
Deja Vu. Just a little side note, but today is bringing up feelings from when my CF doc fired me. I looked back, and it was January 31st, 2008. Dr. do Pico fired me for being "more-correct" than he was. *EYEROLL*
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