Lost In My Mind
The Head And The Heart • The Head And The Heart
Or…Becoming More Brettish, Part Two
22 plays
Or…Becoming More Brettish, Part Two
22 plays
I want to share a recent email exchange with a friend.
This is his note to me after receiving the news that ICE chemotherapy did not work, but that I was approved for Adcetris (the brand name for SGN-35). It is followed by my response.
Bret,
This is good news. I’ll take it. The more I hear you talk and the more I read about what it means to fight cancer, the more I realize how true it must be that it is a life-changing experience…one in which you don’t go back, you only go forward. It is interesting that mixed in with the fear and distress I feel on hearing of your physical pain and struggle, I also see and hear about the transformative experience that this is. While in a sense it separates you from us (those who love and care about you but who cannot empathize with your journey), it also draws us in - to a limited extent - to a greater understanding of those who do battle. I guess what I’m saying is that I know what you are going through is making you into a better person…or a better way to say it might be that it is making you more fully you…more Brettish. And I am privileged to be your friend as you go through this process, and I hope I can rise to the occasion and learn something about life and struggle and journey from you. So as you become a fuller version of yourself through this process, I will promise to move forward with you and to do my best to learn to appreciate what you will bring to the table in our friendship in years to come…to embrace the new and refined you rather than hoping for a carefree and idealized past where we can pretend struggles are something the folks across town have to deal with.
To mix CB radio lingo with 90s rap lingo…peace out good buddy,
-Frank
Frank,
I’ve received a lot of emails, notes, cards, and well wishes over the past year, and for that I am thankful. But I’ve been particularly anxious to say thank you for this note. Empathetic. Friendly. Thoughtful. Insightful. Just as I’ve always known you to be. It’s a top-fiver for sure. People ask what they can do to help when they live out of town, and this is a pretty tasty example. Thank you.
Interestingly, I recently spoke on the phone to our friend Paul for the first time in a hot minute. We were discussing life with Hodgkin’s and recent goings on in his life. The questions were/are…When life takes a big shit on you, is it a learning experience? Does it change you? Or do you fight the change because it is seemingly being forced on you— butt up against it with all you’ve got? You might guess what he chooses. Or at least says he chooses. That’s Paul on the surface—in the phone call performance we love. I respond by admitting that I want to be changed by this. I want to listen and learn. To be measured, not spilling. I say I am somewhat predisposed away from conflict—at least of this nature. On my surface, I want this to make me a different person. It feels necessary.
Beneath my surface, away from emails and blogs and my preternatural need to say and feel the right thing, at home, in my head, in my guts, I recognize so much stubbornness, so much dogged determination not to change, that it makes me sick. Fills me with dread for my future.
On the surface, I say to Paul, “well…Paul, that’s so nice of you to make vivid for me how lovely it is that I know how to change and roll with the punches, but if you were backed in a corner you would do the same. By force, you change.” A statement designed to deflect praise and simultaneously bask in it. But after we hung up, the conversation made vivid for me something else. Even when I have a very clear picture of something bad in my not to distant future, change can feel damned near impossible.
Sick, right? We know change is necessary, but we don’t know what change is necessary. Or if we do, we refuse to change it anyway. When we were college-enrolled, intellectual hacks (besides you), we distrusted adults for exactly what we are starting to admit we are capable of as well. And it’s actually not, I’m realizing, not changing. Change is easy. People we look down on change jobs, towns, spouses and so forth all the time. Rather, it’s not growing. Not…evolving. We were growing then. We were evolving faster than we could grow beards (again, besides you). We believed when we were adults we would live better than our parents. We would look in our backyards, and find the fruits of a life well invested—if we even wanted backyards—not a giant, growing pile of regret, self-doubt and ghosts.
I don’t want to butt up against this disease, but I can’t seem to help it. I want, as you say, to move forward. Become fuller. More refined.
Man, do I want to be more Brettish.
Isn’t it interesting that even though they don’t know why people get Hodgkin’s Lymphoma, I still manage to feel guilty for having it?
Truth is, I can go backwards.
But it’s springtime. And I read your words. I feel your promise. I share food and stories with family and friends. Hold hands with my wife. Feel the cool, refreshing breeze of the night. Take a deep and less painful breath. And I believe that I am changing. Um…growing. Guilt-lifting. Ghost-busting. Hodgkin’s-defying. This is life-changing after all, and it is possible for me to know what change is necessary. I am more Brettish.
Thanks for thinking of me.
Sincerely,
Bret
It’s Friday, let’s keep it fun and come out fighting. Please enjoy as the hemoncology floor of Seattle Children’s Hospital performs Kelly Clarkson’s “Stronger”
The chemo dream-o continues.
I’m being made a fool. I swear. Duped. Placebo’d. This is some sort of racket. My nurses…nothing but two-bit hustlers. My oncologist, Dr. Winter, their unscrupulous Godmother, Don Vito Winter.
SGN-35 is a fraud.
It has to be.
The greatest reality, and trick of chemotherapy, is how it breaks you down to build you back up. We all know that. It’s a bully hiding a big heart. An army general shedding a civilian to solder a soldier. A schoolmarm handing out lashings as lessons. Chemotherapy is old school like that. If you look in the mirror and recognize yourself, it’s not working. Your guts must wrench. Your weight must balloon or vanish. Your hair must clump. Your bowels must knot. Your brains must mush. These aren’t problems. These are just signs that it’s working.
It’s got to be harsh. Garish.
So why does it feel like spring? Why is my scalp sprouting like a garden? Why is my weight equalizing? My skin, colorizing? My brain, organizing? Why is my energy level bordering on annoying? Why can I breathe so deeply? So damned deeply.
I’m being made a fool. This is not chemotherapy. It can’t be.
I know when I’ve been given a pony instead of a bronco. This ain’t my first rodeo. I need a bronco. A bully. A General. A Marm. I need Winter. Not spring.
SGN-35 says cancer treatment is easy. I say, since when? Since when…
A friend of mine, Chelsea, just forwarded this message from her friend, Hun.
“I’m at the Cathedral of Notre Dame in Strasbourg. I lit one of these candles for your friend with the Hoechemo blog. I hope it works!”
It sent shivers through my body that I awkwardly tried to focus on my mediastinal mass.
Again, I am humbled.
Thank you, Hun.
11 plays
–This will mean a lot more to those familiar with the intrepid R. Kelly…apologies to everyone else
“Remission (Remix)”
Now, um, usually I don’t do this but uh….
Go head’ on break’em off wit a lil’ preview of the remix….
No I’m not tryin to be rude
But ABVD I’m feelin’ you
The way you cure the things you do
Remind me of my precious youth
That’s why I’m all up in yo’ bag
Tryin-a get you to my vein
You must be an inpatient nurse
The way you got me doin’ rounds
So baby gimme that drip drip
Lemme give you that puke puke
Takin’ the roots from my ‘fro
Poopin e’ry 2 to 4
While I say on the call button…
It’s the remix to remission
Hot and fresh out the kitsch’n
Chemo destroyin’ my body
There’s one man here who’s wishin’
Sippin’ on a fun straw
I’m like so what I’m drugged
When’s the freakin PET scan baby?
Wonder if remission will come…
Drip Drip Drip Drip Drip Drip Drip
Drip Drip Drip
Now ICE’s like Murder She Wrote
Once you get me in that gown
Privacy is on the door
Still they can hear me screamin more
Nurse I’m feelin what you infusin
No more hopin and wishin
You about to take my pee
And go test its condition.
So baby gimme that drip drip
Lemme give you that puke puke
Takin’ the roots from my ‘fro
Poopin e’ry 2 to 4
While I say on the call button…
This is the remix to remission
Hot and locked in Fowler’s position
Chemo destroyin my body
There’s one man here who’s wishin’
Sippin on a fun straw
I’m like so what I’m drugged
Turns out I’m freakin’ neutropenic
Lord knows if I’ll ever see sun
Just pill poppin with my Nurse Navigator
We got food everywhere
To make the nausea fade later
We got Senna to my left
And Gas-X to my right
We bring em both together we got poopin all night
Then into my body is the antibody
And I’ve got antibody b/c da pharma’ lobby
It’s chemo round 3; still got to pay somebody
Hopin’ their not tryin to just _____ somebody
Can I get a drip drip
Can I get a puke puke
Takin’ the roots from my ‘fro
Poopin e’ry 2 to 4
While I say on the call button…
This is the remix to remission
Hot and almost through dishin’
Chemo destroyin’ my body
Got one man in here wishin’
Sippin’ on a fun straw
I’m like so what I’m drugged
It’s the freakin deep end baby
And I feel like I’m done…
It’s the remix to remission
Hot and still in here bitchin’
Chemo destroyin my body
There’s one man here who’s wishin
Sippin on a fun straw
I’m like so what I’m drugged
When’s the freakin PET Scan baby
Wonder if remission will come…
…
Man, I’m off in the deep
I’ve gotta cowboy up
VinBlastine the radio
Through the port in my neck
Life’s ups and downs
Is R. Kelly for real???
To the remix
We just druggin it out…
I promised myself when I started this blog that I would never apologize for not writing on it. That to apologize would be antithetical to what I am trying to do therapeutically by writing it in the first place.
Guilt comes anyway.
Instead of apologizing, I would like to thank you all for following my progress so diligently. For caring. For walking with me. For continuing to send letters, calls, gifts and texts even though I can only sometimes find the time to return the favor or even offer my thanks. I want to thank you for sharing stories of how this blog has found you. For encouraging me to keep writing. To keep writing already. To get better already. For continuing to help in whatever way you know to fill me with the belief that I’m bigger than this disease. More stubborn. More resilient.
For now, know that I am physically doing as well as I have in many months. SGN-35 is a chemo dream-o. But staying mentally up for this—as my treatment calendar gets longer and longer, and life plans get altered and re-altered—well, let’s just say I wax and wane with my enthusiasm for the long and winding road.
My oncologist has pushed back my next PET Scan until after my third treatment of SGN-35. My brentuxi(map) keeps getting redrawn. And while intellectually I know that doesn’t necessarily mean a longer path to wellness, I couldn’t help but feel a little beaten when I left the hospital. Maybe it caught me off guard.
And then time alone and time with Aura help me to refocus.
Now, it’s the weekend, and I’m going to go enjoy it. No apologies…