- Published on
Something is messing with my blood. My medical team are not exactly sure what it is. So, for the time being, I've decided it's a goblin -- because it's a gobblin' my hemaglobin, and that sounds more fun than "cancer".
Those of you following along for the past few weeks will know that my counts have jumping up and down like a yo-yo. It started after my one-year-post-transplant check-up — I couldn’t seem to recover from the day of tests. I was constantly tired, headachey, and puffed out from shorts bursts of walking, and as a result I had to drop out of the 5km run which I’d spent 12 weeks training for.
My blood work showed that my hemoglobin (an important component of red blood cells), levels were dropping. My doctor thought it was caused by one of the drugs I was on, and took me off the drug. To keep an eye on the counts, I had to go back to having weekly blood tests.
Four weeks after stopping the suspected culprit, my counts are still dropping. This afternoon my lovely nurse practitioner called to let me know that this week’s results were low enough that I’ll need another bone marrow biopsy on Monday, and possibly a transfusion. My doctor is not too concerned about a relapse at this point, given that my last biopsy was only a month ago and came back completely clean, but she’s not exactly sure why I’ve stopped producing hemoglobin.
Monday will be my 11th bone marrow biopsy in 16 months. I still have pain from the last one - whenever I sit for too long I get a sharp and uncomfortable pain in my tailbone. It’s alleviated by standing and walking, but, thanks to the low hemoglobin counts, I get tired from too much movement. It’s a fun game of balancing pain and fatigue.
Thankfully it hasn’t been too debilitating. I’m not bed-ridden, and I’ve even managed a few days of work this week! It's just frustrating to be feeling exhausted and headachey all the time.
I’m hoping my medical team are able to figure out what’s causing this current dip from the biopsy. In the meantime, hemoglobin goblin, be gone!
Those of you following along for the past few weeks will know that my counts have jumping up and down like a yo-yo. It started after my one-year-post-transplant check-up — I couldn’t seem to recover from the day of tests. I was constantly tired, headachey, and puffed out from shorts bursts of walking, and as a result I had to drop out of the 5km run which I’d spent 12 weeks training for.
My blood work showed that my hemoglobin (an important component of red blood cells), levels were dropping. My doctor thought it was caused by one of the drugs I was on, and took me off the drug. To keep an eye on the counts, I had to go back to having weekly blood tests.
Four weeks after stopping the suspected culprit, my counts are still dropping. This afternoon my lovely nurse practitioner called to let me know that this week’s results were low enough that I’ll need another bone marrow biopsy on Monday, and possibly a transfusion. My doctor is not too concerned about a relapse at this point, given that my last biopsy was only a month ago and came back completely clean, but she’s not exactly sure why I’ve stopped producing hemoglobin.
Monday will be my 11th bone marrow biopsy in 16 months. I still have pain from the last one - whenever I sit for too long I get a sharp and uncomfortable pain in my tailbone. It’s alleviated by standing and walking, but, thanks to the low hemoglobin counts, I get tired from too much movement. It’s a fun game of balancing pain and fatigue.
Thankfully it hasn’t been too debilitating. I’m not bed-ridden, and I’ve even managed a few days of work this week! It's just frustrating to be feeling exhausted and headachey all the time.
I’m hoping my medical team are able to figure out what’s causing this current dip from the biopsy. In the meantime, hemoglobin goblin, be gone!
- Published on
You were disappointed because
You had to drop out of a play
And you couldn’t run the 5km
Because your platelets had dropped too low
And it made you feel tired and frustrated
When is this goddamn cancer thing going to be
Over?!
And you’re sitting in the hospital
Waiting for a treatment
And your friend messages you and says
“Would you like to come to the Bernadette Peters Gala at the Plaza Hotel tonight?”
And you think
It will be a late night, and you’re already tired, but
Fuck it! It’s Bernadette Peters! At the Plaza Hotel!
And you rush home to Brooklyn
And one of your closest friends happens to be in town
And she helps you get glammed up
And packs you a cheese sandwich to eat on the train
And you rush back into Manhattan
Your friend is waiting in the foyer
He brings you back into the green room
And there is Debra Monk!
You go into the ballroom
Guests in black tie and beautiful gowns
Are polishing off cake and wine
The lineup is ridiculous
Marin Mazzie! Annaleigh Ashford! Michael Douglas! Gloria Estefan! Danielle Ferland!
Joel Grey sings “There’s no business like show business”
Debra Monk sings “Everybody’s Girl” and you recall that, for a while, her rendition of “Show People” was your ring tone
The lead girl from Fun Home, along with some of the children from The King and I sing a spirited “Children Will Listen”
Norm Lewis sings “No One Is Alone” from Into the Woods and
His tenor voice is warm and rich
The cast of Dames at Sea sing and it’s cheesy and ridiculous and dated, but it makes you feel
So HAPPY!
And Lesli Margherita is there and you whisper to your friend
“She is my spirit animal. I love her so much”
And a few minutes later, she is standing RIGHT IN FRONT OF YOU
And her human realness is overwhelming and you want to reach out and tell her how much her vlogs and tweets and instagrams have gotten you through the past year
But you’re enjoying the show to worry about fawning at the feet of your idols
And then the NYC Gay Men’s Chorus appears
Seventy men standing in small groups all around the room
They sing “Sunday” from Sunday in the Park with George
It’s a beautiful arrangement
And you can’t help but sing-a-long
Toward the verticals of trees!
It is soaring and glorious
Bernadette Peters
Ascends to the stage
She is so teary she can barely speak
She is grateful and radiant and lovely
And still looks like she did over twenty years ago
How is it even possible?! Is it all the singing?!
The night has reminded you
Why you wanted to be in New York in the first place
It was to go to the theatre and audition and learn lines and be in shows and trip the light fantastic!
It was to go to museums and libraries and beautiful parks and stroll hand in hand with your husband across the Brooklyn Bridge and up and down the streets and across the avenues
It was to have wonderful experiences in this wonderful town
Not to have an existence comprised of blood counts and monitoring your energy and being terrified of relapse and stupid fucking cancer
And although you go home utterly exhausted
You feel entirely elated
Your heart is full of joy
And you are thankful that you’re here
For these moments
You had to drop out of a play
And you couldn’t run the 5km
Because your platelets had dropped too low
And it made you feel tired and frustrated
When is this goddamn cancer thing going to be
Over?!
And you’re sitting in the hospital
Waiting for a treatment
And your friend messages you and says
“Would you like to come to the Bernadette Peters Gala at the Plaza Hotel tonight?”
And you think
It will be a late night, and you’re already tired, but
Fuck it! It’s Bernadette Peters! At the Plaza Hotel!
And you rush home to Brooklyn
And one of your closest friends happens to be in town
And she helps you get glammed up
And packs you a cheese sandwich to eat on the train
And you rush back into Manhattan
Your friend is waiting in the foyer
He brings you back into the green room
And there is Debra Monk!
You go into the ballroom
Guests in black tie and beautiful gowns
Are polishing off cake and wine
The lineup is ridiculous
Marin Mazzie! Annaleigh Ashford! Michael Douglas! Gloria Estefan! Danielle Ferland!
Joel Grey sings “There’s no business like show business”
Debra Monk sings “Everybody’s Girl” and you recall that, for a while, her rendition of “Show People” was your ring tone
The lead girl from Fun Home, along with some of the children from The King and I sing a spirited “Children Will Listen”
Norm Lewis sings “No One Is Alone” from Into the Woods and
His tenor voice is warm and rich
The cast of Dames at Sea sing and it’s cheesy and ridiculous and dated, but it makes you feel
So HAPPY!
And Lesli Margherita is there and you whisper to your friend
“She is my spirit animal. I love her so much”
And a few minutes later, she is standing RIGHT IN FRONT OF YOU
And her human realness is overwhelming and you want to reach out and tell her how much her vlogs and tweets and instagrams have gotten you through the past year
But you’re enjoying the show to worry about fawning at the feet of your idols
And then the NYC Gay Men’s Chorus appears
Seventy men standing in small groups all around the room
They sing “Sunday” from Sunday in the Park with George
It’s a beautiful arrangement
And you can’t help but sing-a-long
Toward the verticals of trees!
It is soaring and glorious
Bernadette Peters
Ascends to the stage
She is so teary she can barely speak
She is grateful and radiant and lovely
And still looks like she did over twenty years ago
How is it even possible?! Is it all the singing?!
The night has reminded you
Why you wanted to be in New York in the first place
It was to go to the theatre and audition and learn lines and be in shows and trip the light fantastic!
It was to go to museums and libraries and beautiful parks and stroll hand in hand with your husband across the Brooklyn Bridge and up and down the streets and across the avenues
It was to have wonderful experiences in this wonderful town
Not to have an existence comprised of blood counts and monitoring your energy and being terrified of relapse and stupid fucking cancer
And although you go home utterly exhausted
You feel entirely elated
Your heart is full of joy
And you are thankful that you’re here
For these moments