A little more of my crazy for you. So you can get a little peek into my brain.
It's a wild ride in there.
The following are words with which I cannot bring myself to have any sort of voluntary contact.
Doesn't mean I have no contact with them. Turns out it's unavoidable at times.
But this does explain why I sometimes stop watching really, really great tv shows smack in the middle of season 3 (out of 6), or why I abandon books I have heard are great, and occasionally why I seemingly rudely leave conversations in social situations.
So here we go.
1. Journey: I literally (and I am using that word correctly here) cannot stand the word "journey". Many blog posts ago I alluded to the fact that I do not understand why anyone would refer to their medical crisis as a "cancer journey". It's not like it's a vacation. Or a trip. You're not fulfilling your lifelong dream to go somewhere. But it is quite the popular phrase among patients in the oncology world. Now, several years into this whole situation, I cannot bring myself to even use the word journey as a reference to an actual adventure. I just don't use the word. At all. Ever. Too much baggage associated with it (for me). If you happen to ask me where I am journeying next, I will respond by pointedly NOT including that word in my response. I will happily tell you where I am going. I will gleefully tell you about my upcoming voyage. I have lots of ideas of where I would like to wander.
I realize that me avoiding a specific word seems silly. But that particular word is this really unappealing mustard yellow color, and it makes otherwise bright and vibrant sentences dull and flat. So it is banished from my vocabulary.
It is not banished from yours. Please feel free. I would never presume to ask or tell anyone else what words they can or should not use around me. Just don't take it personally when you start to tell me about your amazing journey and I cringe. It's not you. It's me.
2. You made it to word number two? This doesn't seem just insane to you? You are dedicated, reader. Also, you are probably related to me, so I appreciate the loyalty.
My second carefully avoided word is the big C word itself. (NOTE: next time you see Dave, please ask him to regale you with the story of how he taught 180 eighth graders "the C word"--entirely different C word, obviously. Great story.)
Anywho. (anyhoo? how is that spelled?)
So anyway.
The C word.
Don't want to talk about it. Don't want to read about it. Don't want to hear about it.
I don't know what else I can say regarding this. I have a visceral aversion to contact with this word.
I think you can understand why. I think ANYONE can understand why. And yet.
You'd be surprised how many people tell me stories. How many people throw it into casual conversation. Regularly. Like, all the time.
Just throwing this out there: don't invite that word into conversation with anyone intimately involved on the patient-end of the world of oncology. Ever. Or at least, ever with me.
3. Those who shall not be named: There are more words. But they are the ones that, for me, evoke such instinctual aversion that I don't even want to write them down. They are my Voldemort. I will go out of my way not to avoid contact of any sort.
4. Moist
Just kidding. But as a caveat, I only use this word when talking about cakes.
So that's a glimpse into the gyri and sulci of my cerebral cortex.
It's a rollercoaster in there.
I fully realize that none of this may make sense to anyone but me.
Thanks for trying to ride.
Thursday, December 26, 2019
Friday, December 13, 2019
Ed and Kelly, Part 1
I warned you. Stories to come are in no particular order. In fact, they are decidedly out of order. They don't really need an order is the thing. They're just stories about people. Completely unrelated people, whose only link has nothing to do with when things happened and everything to do with what actually happened. So here we go.
We were back in NYC. Honestly, I know it's supposed to be the greatest city in the world, everyone wants to be a part of it yaddah yaddah yaddah, but I don't get it. I really don't. I fully realize that I have a connection with New York City that perhaps precludes me having a positive association, but nevertheless, even without that, I don't get it. It's crowded. It's dirty. It smells. It's expensive. It's freezing (in the winter). I mean, really really cold! Sleet flying into your face horizontally kind of cold. WHAT IS THE DRAW?
Anyway. I digress.
We were back in NYC. In December. I had five days of radiation (this is not a word with any synonym, so I have to use it, and just for your own edification, for me the word radiation is yellow and red, outlined in black, and very jaggedy--like the word POW! in a comic book). Dave and I were staying at Hope Lodge, which is run by the American Cancer Society. It's a no-frills kind of hotel for those traveling farther than 40 miles to NYC for treatment. MSK secured us the room, which was great because we were there the week of the lighting of the Rockefeller Center Christmas tree and hotels in midtown were close to sold out.
We checked in on Sunday afternoon, and were given a brief tour. We got to see the patient lounge floor (large TV room, small dining room, library, laundry room) as well as the shared areas on our floor (a quiet room as well as a kitchen for our floor). In the kitchen, every room had its own bin in the refrigerator as well as its own cupboard space, which was nice. We were going to be there for six days, so having space for our own breakfast foods and snacks was greatly appreciated.
The very nice woman who was showing us around also told us about the "community dinners" that happened every week on the patient lounge floor, in the dining room. During our week, there were several dinners being provided by various organizations--a taco bar on Monday, a Christmas Tree Lighting dinner and ceremony on Tuesday, and I think there was even a third dinner that week but I can't remember what it was. We nodded our heads as she invited us to join in, but my head was nodding out of politeness. I didn't have a huge interest in having dinner with a room full of... (I don't really even know how to put this into words because it makes me sound unkind and judgmental so please don't stop reading at the end of this sentence because I swear I somewhat redeem my attitude by the end of this post)... sick people. And yes, I get it. I am one of those people. Self-aware and somewhat in denial all at once. It's a great party trick.
So there we were. Ready to face the week. Not gonna lie--feeling a bit sorry for myself because I was having to spend seven days during the holiday season away from home.
Monday rolls around and Dave and I are having a late-night snack in the shared kitchen on our floor. Just the two of us. Until Ed walked in. He wandered over to the window and looked outside. It had been snowing all day. I think by that time it had stopped, but it was brutally cold outside. He turned back around and said hello to us, and the conversation began.
Turned out Ed was checking out the weather because he and his wife, Kelly, wanted to go home. They live in New Jersey--about 64 miles away from MSK. That's a very specific distance to mention. He explained.
Kelly was a "transplant" patient. Not organ transplant. Blood transplant.
Seriously.
The doctors at MSK had searched worldwide for a bone marrow donor for Kelly, and had found one, who only was a partial match. ONE. Kelly did rounds and rounds of chemo to kill off her entire immune system--all of it. They did the bone marrow replacement. And then the doctors transplanted someone else's cord blood. Which changed Kelly's blood type to the donor's (WHAT?!?!) and started to rebuild her immune system. As Kelly said to me the next night in conversation, "I've been to hell. And I've come back." Amen, sister.
They quite literally replaced her immune system and rebooted her blood so that the genetic mutation that was causing her cancer was not present anymore.
Mind. Blown. Ed summed it up, "It's like science fiction."
Now, back to why Ed was looking out the window and why it was relevant that they lived 64 miles away. Due to the serious nature of Kelly's procedure, and the fact that her immune system is severely compromised as it is starting to rebuild, she had to be within 60 miles of MSK at all times in case there was an emergency. So Ed and Kelly had been at Hope Lodge since October, because their house was four miles outside of the safety range.
They really just wanted to go home for a few nights. To their own house. Their own bed. Their own kitchen.
But they didn't. It wast late, and it was cold and icy outside, and Ed seemed to realize that perhaps this was not the best night to stage a break-out of the joint. He mentioned that they were hoping to head home, for good, in January. In about a month.
Ed thanked us for chatting and excused himself to return to his room, to Kelly.
Three months. Ed and Kelly were going to spend three months at Hope Lodge.
Hard to feel sorry for myself at this point. For my one week of treatment.
I know, I know, I know that one person's circumstances being very difficult really has no bearing on the impact of another person's circumstances. Your broken leg doesn't make my headache any less painful. Apples and oranges.
I realize that Ed and Kelly spending three months in NYC away from home does not make my week away from home any less frustrating for me. But it does give me pause. It should give me pause.
Sometimes it's important to see what you DO have, instead of what you don't have. Which is not always easy. It requires effort, because grievance often comes much more readily than gratitude.
I'm an optimist by nature. I'm honestly reluctant to say, "Hey, it could be worse" (seems like a negative approach to optimism, and also frankly, I've said that numerous times throughout this ordeal and have proven myself correct) when I could, alternatively, say, "There's lots to be thankful for!"
But even I, the "glass is half full" girl, have to say that I felt like I got hit over the head with some mind-blowing perspective after a week at Hope Lodge. A week with Ed and Kelly.
Coming next... Ed and Kelly, Part 2: Dinner with Ed and Kelly
We were back in NYC. Honestly, I know it's supposed to be the greatest city in the world, everyone wants to be a part of it yaddah yaddah yaddah, but I don't get it. I really don't. I fully realize that I have a connection with New York City that perhaps precludes me having a positive association, but nevertheless, even without that, I don't get it. It's crowded. It's dirty. It smells. It's expensive. It's freezing (in the winter). I mean, really really cold! Sleet flying into your face horizontally kind of cold. WHAT IS THE DRAW?
Anyway. I digress.
We were back in NYC. In December. I had five days of radiation (this is not a word with any synonym, so I have to use it, and just for your own edification, for me the word radiation is yellow and red, outlined in black, and very jaggedy--like the word POW! in a comic book). Dave and I were staying at Hope Lodge, which is run by the American Cancer Society. It's a no-frills kind of hotel for those traveling farther than 40 miles to NYC for treatment. MSK secured us the room, which was great because we were there the week of the lighting of the Rockefeller Center Christmas tree and hotels in midtown were close to sold out.
We checked in on Sunday afternoon, and were given a brief tour. We got to see the patient lounge floor (large TV room, small dining room, library, laundry room) as well as the shared areas on our floor (a quiet room as well as a kitchen for our floor). In the kitchen, every room had its own bin in the refrigerator as well as its own cupboard space, which was nice. We were going to be there for six days, so having space for our own breakfast foods and snacks was greatly appreciated.
The very nice woman who was showing us around also told us about the "community dinners" that happened every week on the patient lounge floor, in the dining room. During our week, there were several dinners being provided by various organizations--a taco bar on Monday, a Christmas Tree Lighting dinner and ceremony on Tuesday, and I think there was even a third dinner that week but I can't remember what it was. We nodded our heads as she invited us to join in, but my head was nodding out of politeness. I didn't have a huge interest in having dinner with a room full of... (I don't really even know how to put this into words because it makes me sound unkind and judgmental so please don't stop reading at the end of this sentence because I swear I somewhat redeem my attitude by the end of this post)... sick people. And yes, I get it. I am one of those people. Self-aware and somewhat in denial all at once. It's a great party trick.
So there we were. Ready to face the week. Not gonna lie--feeling a bit sorry for myself because I was having to spend seven days during the holiday season away from home.
Monday rolls around and Dave and I are having a late-night snack in the shared kitchen on our floor. Just the two of us. Until Ed walked in. He wandered over to the window and looked outside. It had been snowing all day. I think by that time it had stopped, but it was brutally cold outside. He turned back around and said hello to us, and the conversation began.
Turned out Ed was checking out the weather because he and his wife, Kelly, wanted to go home. They live in New Jersey--about 64 miles away from MSK. That's a very specific distance to mention. He explained.
Kelly was a "transplant" patient. Not organ transplant. Blood transplant.
Seriously.
The doctors at MSK had searched worldwide for a bone marrow donor for Kelly, and had found one, who only was a partial match. ONE. Kelly did rounds and rounds of chemo to kill off her entire immune system--all of it. They did the bone marrow replacement. And then the doctors transplanted someone else's cord blood. Which changed Kelly's blood type to the donor's (WHAT?!?!) and started to rebuild her immune system. As Kelly said to me the next night in conversation, "I've been to hell. And I've come back." Amen, sister.
They quite literally replaced her immune system and rebooted her blood so that the genetic mutation that was causing her cancer was not present anymore.
Mind. Blown. Ed summed it up, "It's like science fiction."
Now, back to why Ed was looking out the window and why it was relevant that they lived 64 miles away. Due to the serious nature of Kelly's procedure, and the fact that her immune system is severely compromised as it is starting to rebuild, she had to be within 60 miles of MSK at all times in case there was an emergency. So Ed and Kelly had been at Hope Lodge since October, because their house was four miles outside of the safety range.
They really just wanted to go home for a few nights. To their own house. Their own bed. Their own kitchen.
But they didn't. It wast late, and it was cold and icy outside, and Ed seemed to realize that perhaps this was not the best night to stage a break-out of the joint. He mentioned that they were hoping to head home, for good, in January. In about a month.
Ed thanked us for chatting and excused himself to return to his room, to Kelly.
Three months. Ed and Kelly were going to spend three months at Hope Lodge.
Hard to feel sorry for myself at this point. For my one week of treatment.
I know, I know, I know that one person's circumstances being very difficult really has no bearing on the impact of another person's circumstances. Your broken leg doesn't make my headache any less painful. Apples and oranges.
I realize that Ed and Kelly spending three months in NYC away from home does not make my week away from home any less frustrating for me. But it does give me pause. It should give me pause.
Sometimes it's important to see what you DO have, instead of what you don't have. Which is not always easy. It requires effort, because grievance often comes much more readily than gratitude.
But even I, the "glass is half full" girl, have to say that I felt like I got hit over the head with some mind-blowing perspective after a week at Hope Lodge. A week with Ed and Kelly.
Coming next... Ed and Kelly, Part 2: Dinner with Ed and Kelly
Sunday, December 8, 2019
The Universe Made Me Do It
Have you ever felt pushed, no prodded--no FORCED--wait, no, (double caps if they existed; wait, is double-caps just a bigger font?) COMPELLED! YES! THAT's THE RIGHT WORD!-- to do something that you don't want to do, and will bring you perhaps an undisclosed amount of mental anguish and also, no one is actually forcing you to do it but yet here you are doing it anyway at your own peril?
Rhetorical question. Because really, when I ask it, not only am I not expecting you to answer it. I'm not even expecting you to understand the question. That's not a reflection on your intellect. It's a revelation of my crazy.
I am going to end up writing a metric ton (that is officially 1000kg, which I believe is also the equivalent of a shit-ton) about my medical adventures. I have tried so hard not to write about it. So very, very hard.
There is a lot to say. There are quite a few people you should know about. There are miracles happening that will blow your mind. None of which I want to write about. Not really. But I think I have to. The universe is conspiring to COMPEL me tell the story. The stories.
I will try. I don't really know how it will come out. It may not sound like me, but I'm going to force it out anyway because again, it feels like for some reason the universe thinks it's important.
Here's my dilemma, why this particular subject is so difficult (beyond the obvious idea that writing about it kind of has me re-living some crap that is, well, crappy). Normally, it's cathartic for me to release words from my brain onto the page and create the exact picture, the exact emotion, the exact thought that I'm trying to convey. For me, writing is full of colors and shapes and feelings and images and impressions that swirl together perfectly.
Here's the crazy. (Again, no worries if you don't understand this part. I'd be worried about your mental state if you do understand it.) Writing about my... I don't even want to write the word, honestly... it's not a color or shape or feeling or image or impression that I can identify. That word, that awful C word... I don't know what color it is. At first I thought gray. But no, it's not. And surprisingly it's not brown. Or black. And until I can identify what color it is, I can't fit it into my picture properly. The words are pieces that, as they fall onto the page, have to fit together perfectly to recreate the picture in my head. If just one piece doesn't interlock exactly right, the picture, for me, is distorted. And currently, the words in my head relating to telling the stories of this experience are a jumble. I can't see the shapes. I can't get a clear impression of the feelings I want to convey.
But I'm going to give it a go anyway. There are tales to be told.
So buckle up and prepare for some disjointed, but necessary, storytelling. Get ready for some puzzles with a few pieces missing (perhaps the most apt metaphor for my brain right now).
The Universe is making me do it.
Rhetorical question. Because really, when I ask it, not only am I not expecting you to answer it. I'm not even expecting you to understand the question. That's not a reflection on your intellect. It's a revelation of my crazy.
I am going to end up writing a metric ton (that is officially 1000kg, which I believe is also the equivalent of a shit-ton) about my medical adventures. I have tried so hard not to write about it. So very, very hard.
There is a lot to say. There are quite a few people you should know about. There are miracles happening that will blow your mind. None of which I want to write about. Not really. But I think I have to. The universe is conspiring to COMPEL me tell the story. The stories.
I will try. I don't really know how it will come out. It may not sound like me, but I'm going to force it out anyway because again, it feels like for some reason the universe thinks it's important.
Here's my dilemma, why this particular subject is so difficult (beyond the obvious idea that writing about it kind of has me re-living some crap that is, well, crappy). Normally, it's cathartic for me to release words from my brain onto the page and create the exact picture, the exact emotion, the exact thought that I'm trying to convey. For me, writing is full of colors and shapes and feelings and images and impressions that swirl together perfectly.
Here's the crazy. (Again, no worries if you don't understand this part. I'd be worried about your mental state if you do understand it.) Writing about my... I don't even want to write the word, honestly... it's not a color or shape or feeling or image or impression that I can identify. That word, that awful C word... I don't know what color it is. At first I thought gray. But no, it's not. And surprisingly it's not brown. Or black. And until I can identify what color it is, I can't fit it into my picture properly. The words are pieces that, as they fall onto the page, have to fit together perfectly to recreate the picture in my head. If just one piece doesn't interlock exactly right, the picture, for me, is distorted. And currently, the words in my head relating to telling the stories of this experience are a jumble. I can't see the shapes. I can't get a clear impression of the feelings I want to convey.
But I'm going to give it a go anyway. There are tales to be told.
So buckle up and prepare for some disjointed, but necessary, storytelling. Get ready for some puzzles with a few pieces missing (perhaps the most apt metaphor for my brain right now).
The Universe is making me do it.
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