I'm getting close to the end of radiation, and about to come to my next step in cancer therapy: hormone suppression treatment. This consists of taking a drug to block the estrogen production in my body for 5 to 10 years, most likely 10. The drug could be tamoxifen, or something else if my body doesn't tolerate tamoxifen well. The thing that's weird about all of this is I can't seem to think about it. I draw a blank.
You see, I can't see the future right now. For example, people ask me about my plans for growing out my hair, because they look at me and see that my hair has grown. I never look at myself in the mirror or look at my hair so I don't know what it's doing. I don't know about the hair - I literally don't think about it or care - this experience of having cancer has stripped hair style thoughts away. I don't know how long it is. I don't know what color it is. I don't know if it's straight or wavy. I can't see the hair future - I draw a blank. So I have no plan whatsoever to do with my hair in any way, shape, form, bob, long, short, butch short, mohawk, Little House on the Prairie long, Scarlett Johansson waves, nada, zip zilch, el-nothingo.
It's not that I don't want to think about my hair or that I don't think I have a future, no, that's not it at all. I'm confident that I have a future, but I'm not living in it. All I can see is now and maybe a few weeks out. It's not really negative or anything - it's just the way my mind is now. This kind of sounds Buddhist or Zen, but no, I wouldn't equate myself with being on that higher level or anything, it's just a natural shift that has occurred in my thinking. Or lack thereof.
For example if you want to go out to lunch with me or something I can talk to you about today or tomorrow but not much further out than that. I don't want to make any plans. I'm content to just be here minute by minute, hour by hour, day by day mostly. Or actually I'm not content some of the time, but I just am here. Come see me here now.
I've had 16 regular radiation appointments. Today I had my first of the four "boost" sessions today. After those my 20 sessions will be done they say. I don't see that.
You see, I can't see the future right now. For example, people ask me about my plans for growing out my hair, because they look at me and see that my hair has grown. I never look at myself in the mirror or look at my hair so I don't know what it's doing. I don't know about the hair - I literally don't think about it or care - this experience of having cancer has stripped hair style thoughts away. I don't know how long it is. I don't know what color it is. I don't know if it's straight or wavy. I can't see the hair future - I draw a blank. So I have no plan whatsoever to do with my hair in any way, shape, form, bob, long, short, butch short, mohawk, Little House on the Prairie long, Scarlett Johansson waves, nada, zip zilch, el-nothingo.
It's not that I don't want to think about my hair or that I don't think I have a future, no, that's not it at all. I'm confident that I have a future, but I'm not living in it. All I can see is now and maybe a few weeks out. It's not really negative or anything - it's just the way my mind is now. This kind of sounds Buddhist or Zen, but no, I wouldn't equate myself with being on that higher level or anything, it's just a natural shift that has occurred in my thinking. Or lack thereof.
For example if you want to go out to lunch with me or something I can talk to you about today or tomorrow but not much further out than that. I don't want to make any plans. I'm content to just be here minute by minute, hour by hour, day by day mostly. Or actually I'm not content some of the time, but I just am here. Come see me here now.
I've had 16 regular radiation appointments. Today I had my first of the four "boost" sessions today. After those my 20 sessions will be done they say. I don't see that.
The boost sessions mean that the machine is calibrated to deliver radiation to a much smaller targeted area, with a stronger zap to go to a specific mapped area inside the breast, which is where the tumor originally grew. I had two tumors, so there are two mapped areas.
This is a special extra boost to supposedly help kill any remaining cancer cells more effectively. Sounds good. I'm not sure what it means. I'm drawing a blank.
Here is what is different and special about the four boost sessions I am getting:
1. Today was boost one. The technicians set up the machine and it shone light down on me from through its little metal teeth that opened specifically into the shape that they would be beaming into me. They used that silhouetted light shape shining down on to my breast to mark where the radiation would go in. They marked it by drawing all around the edges of the light lines shining down on me from god oops I mean machine, with black sharpies, adding a few X marks, and finally finishing their Amy Boob Art Project with a little round clear plastic sticker with its own X written on it. I asked why they did this - surely a multi million dollar machine doesn't need look at a magic marker to know where to go (I hope!). They said they did it for documentation. I suppose this means that if I need radiation later in the future (remember the future is a place about which I draw a blank) they'll be able to go back and look at these pictures to determine where I had it in the past.
2. Once they got that all set up I got blasted twice. Once from straight up above me going straight down into my body, which is the opposite philosophy of the radiation I had been getting (which was breast-skimming for the express purpose of NOT shooting straight in to the body). The second blast is from the side of my body straight into my body, also the opposite philosophy - that philosophy being the idea of trying to miss the major organs in me. Seemed odd to throw out that strategy now. I asked them about why the radiation beams were now going straight into my body perpendicularly, after I'd heard so much about how important it was to go in at extreme angles in order to just hit the blob on top of my chest but without going inside of my chest? I was alarmed to think about the radiation going straight in where my heart and lungs are, which is not good. She assured me that they "try to make it so that it wasn't too deep..." Hmmmmm... They program it so that the x-rays wouldn't go in "too far" or harm me too much. This maybe feel a little bit better. I think. I'm drawing a blank.
3. And in a little fun moment of low-tech retro-land, they then took a little wet washcloth and cut it into a little 2 inch strip and taped it to my scar where my four lumpectomies were. My sliced upon part. I asked about this of course, being the curious patient that I am. (Do they hate me or love me?). She said this would help to "draw the radiation up to my skin." I didn't believe her so I asked for further information. She then said that this wet piece of terrycloth sort of acted like an extra layer or two of skin - I'm still not quite sure what that means, but what I think it means is that the extra thickness of it (it = wet terry cloth = fooling the machine cuz my skin is like a wet washrag? Ok I'll buy that) on the outside of my body would help the radiation slow down more quickly as it was going in so that the rays could focus on the scar area outside more effectively. In other words my tough and gnarly scars are about to get the fuck zapped out of them. That's what I got out of it.
Don't worry the above photo is rated G - that X and round thing is just a sticker.
This is a special extra boost to supposedly help kill any remaining cancer cells more effectively. Sounds good. I'm not sure what it means. I'm drawing a blank.
Here is what is different and special about the four boost sessions I am getting:
1. Today was boost one. The technicians set up the machine and it shone light down on me from through its little metal teeth that opened specifically into the shape that they would be beaming into me. They used that silhouetted light shape shining down on to my breast to mark where the radiation would go in. They marked it by drawing all around the edges of the light lines shining down on me from god oops I mean machine, with black sharpies, adding a few X marks, and finally finishing their Amy Boob Art Project with a little round clear plastic sticker with its own X written on it. I asked why they did this - surely a multi million dollar machine doesn't need look at a magic marker to know where to go (I hope!). They said they did it for documentation. I suppose this means that if I need radiation later in the future (remember the future is a place about which I draw a blank) they'll be able to go back and look at these pictures to determine where I had it in the past.
2. Once they got that all set up I got blasted twice. Once from straight up above me going straight down into my body, which is the opposite philosophy of the radiation I had been getting (which was breast-skimming for the express purpose of NOT shooting straight in to the body). The second blast is from the side of my body straight into my body, also the opposite philosophy - that philosophy being the idea of trying to miss the major organs in me. Seemed odd to throw out that strategy now. I asked them about why the radiation beams were now going straight into my body perpendicularly, after I'd heard so much about how important it was to go in at extreme angles in order to just hit the blob on top of my chest but without going inside of my chest? I was alarmed to think about the radiation going straight in where my heart and lungs are, which is not good. She assured me that they "try to make it so that it wasn't too deep..." Hmmmmm... They program it so that the x-rays wouldn't go in "too far" or harm me too much. This maybe feel a little bit better. I think. I'm drawing a blank.
3. And in a little fun moment of low-tech retro-land, they then took a little wet washcloth and cut it into a little 2 inch strip and taped it to my scar where my four lumpectomies were. My sliced upon part. I asked about this of course, being the curious patient that I am. (Do they hate me or love me?). She said this would help to "draw the radiation up to my skin." I didn't believe her so I asked for further information. She then said that this wet piece of terrycloth sort of acted like an extra layer or two of skin - I'm still not quite sure what that means, but what I think it means is that the extra thickness of it (it = wet terry cloth = fooling the machine cuz my skin is like a wet washrag? Ok I'll buy that) on the outside of my body would help the radiation slow down more quickly as it was going in so that the rays could focus on the scar area outside more effectively. In other words my tough and gnarly scars are about to get the fuck zapped out of them. That's what I got out of it.
A curiosity: no matter how much you ask about this stuff ahead of time, no one can ever give you any answers that are very accurate, and you will not know what's happening until you are there and it's actually happening. Or, unless you read my blog I suppose.
Another curiosity: we do not treat human beings as human beings when we treat them for medical stuff. We treat them like little files - a small Manila vanilla file of one symptom ("sprained ankle" or "sore throat" or "boils on the buttocks") or disease/illness ("mumps" or "multiple sclerosis" or "prostate cancer" or "swine flu") or condition ("recurring anxiety" or "auto-immune dis function" or "insomnia" or "irritable bowel" or "horrible personality") but fail to see how these are, surely, interwoven and connected.
The medical community of United States of America in the year 2014, thinks of me as a "cancer patient." So when a test showed cancer in a breast I was sent to a "cancer doctor." But wait - there's more. Actually they did not send me to a cancer doctor - I went to three highly trained specialists:
1. A medical oncologist - the person who gives chemicals - highly specialized, highly trained, brilliant, expert in chemicals that kill rapidly dividing cells
2. A surgeon - the person who cuts and removes cancerous tissue - highly specialized, highly trained, brilliant, expert in surgical techniques
2. A radiation oncologist - highly specialized, highly trained, brilliant, expert in the use of x-rays to kill cancer cells
However - I am not only composed of rapidly dividing cells, cancerous tissue, and cancer cells. The other 99.43% of my body and 87.59% of my mental state is not being addressed.
And I am not sure if the three experts know me, or each other, very well.
Actually, I am not a "cancer patient," I am a human being. Actually I am the one and only Amy Jeanine Larner Adams, born July 15, 1961. The cancer that I have is just part of a long, almost 53-year-old history of events, experiences, genes, nutrition, fluoride, antibiotics, proclivities, personality, chemicals, accidents, geography, ethnicity, luck, exposure, geography, and ancestry.
Yet I am sent to different specialists for special things, and each of them only looks at one teeny tiny part of me, like opening a door an inch and analyzing and seeing just an inch wide slit of a person but not noticing anything else about them.
Why? Why? Why? Why? Why?
Why? Why? Why? Why? Why?
Why? Why? Why? Why? Why?
Why? Why? Why? Why? Why?
Why? Why? Why? Why? Why?
I'm drawing a blank.
Why do we treat patients with such a short sighted and narrow view of "your alleged diagnosis" instead of as a holistic, complete organism? No, make that set of millions and billions of organisms held together in this thing we call a human?
I have experienced strep throat, childbirth, depression, dog bites, pleurisy, heart surgery, pneumonia, chickenpox, sunburn, breast cancer, hangovers, anxiety, trips, cuts, bites, stomach flu, anxiety, fractured wrist, ripped knee ligaments, hangnails, inflammation, sinus drip, plaque, dandruff, surgery for a fatty tumor on my knee, a sprained ankle, happiness, burns, drunkeness, sloth, heartbreak, cuts and bruises, car accidents, freak outs, lice, colonoscopies, pelvic exams, tooth extractions, stitches, drugs, braces, migraine headaches, bitten fingernails, fungus in my big toenail, acne, thrush, constipation, sprained elbows, yeast infections, sore joints, irregular periods, hot flashes, anemia, low blood sugar, cramps, backaches, crackling joints, low blood pressure, extreme silliness, dry mouth, vaccines, medications, an avalanche of ibuprofen, greasy hair, myopia (both literal and figurative), plus the average bumps and bruises and colds and sores of life. And much more. Are not all of these things related to each other? In the plantation of my body, filled with millions and millions of bacteria and microorganisms that all work together to make all of my departments function?
But wait. Before you think I'm throwing all doctors under the bus let me tell you. I know. I know why we function in this way medically. Because. The human body is so complex that we just can't master it. I do believe that what we know, as humans, as the best of our medical minds know - is but a fraction of the universe of complexity of the human body. And I forgive us, I forgive the doctors who are TRYING.
I forgive you.
I forgive you.
I forgive you.
But still I feel that we can not treat a person effectively until we can understand the interwoven parts of the person better.
In the future, I think we will figure this out. Each person will have a doctor that knows you as a holistic organism, filled with lots of other organisms that all relate to each other. This doctor will take into account your history, your genetic makeup, and how everything in your body works together, how your immune system is affected by the things that you eat or take and the experiences you have, as well as the diseases and surgeries and events of your life. It's all related. It'll be grand then. Not in my life. Future people - enjoy!
I know were starting to think this way medically, there are so many fascinating books out there all about talk about diet and yoga and meditation and happiness and depression and how of these things affect every other thing, even life-threatening diseases like cancer. Future people - enjoy!
Yet it's hardly really in practice yet and I find this upsetting. I've been going to hell in a hand-basket over here in the last couple weeks alone, with this weird auto immune system flareup of pleurisy pain that is confounding to my doctors. I have different doctors and nurses at the same place tell me completely opposite things and it's clear to me that they're not talking to each other or really understanding me as a patient. I don't really fault them and I'm not really mad, I think our system doesn't work very well. Literally the other day one person told me to call my general practitioner, and in the same SECOND my phone beeped and another person there told me to get a prescription and start taking steroids. What did I do? Do you know?
I'm drawing a blank.
LOVE ME OR HATE ME
By Lady Sovereign
(Come over if you want me to play this awesome song for you)
Lyrics:
Yeah,
It's officially the biggest midget in the game.
I dunno.
Make way for the S.O.V.
Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!
I'm fat, I need a diet.
No, in fact I'm just here lying
And I ain't got the biggest breast-s-s, but I write all the best disses.
I got hairy armpits, but I don't walk around like this.
I wear a big baggy t-shirt that hides that nasty shit.
Ugh!
Never had my nails done.
Bite them down until they're numb.
I'm the one with the non-existent bum,
Now I don't really give a....Ugh!
I'm missing my shepherd's pie
Like a high maintenance chick missin' her diamonds.
I'm missin' my clippers lighters.
Now bow down to your royal highness.
No! I don't own a corgi.
Had the hamster - it died 'cause I ignored it.
Go on then, go on report me,
I'm English, try and deport me!
Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!
I'm that funky little monkey with the tiniest ears.
I don't like drinking fancy champy,
I'll stick wit Heineken beers.
Whoops, might burp in ya face,
A little unlady-like,
What can I say?
Well oh gosh I'm not posh, me, I wear odd socks.
I do what I'm doing, yeah!
So everybody's entitled to opinions,
I open my mouth and shit I got millions.
I'm the middle kid, the riddle kid,
I'll make you giggle till your sick
Cause my nose jiggles while I spit.
Yeah I do have some stories
And its true I want all the glory.
Go on then, come on support me,
I'm English, try and deport me!
Love me or hate me, it's still an obsession.
Love me or hate me, that is the question.
If you love me then thank you!
If you hate me then fuck you!
Love me or hate me
Love me or hate me
So I can't dance and I really can't sing.
I can only do one thing,
And that's be Lady Sovereign!
So I can't dance and I really can't sing.
I can only do one thing,
And that's be Lady Sovereign!
It seems to me, from the outside looking in, that you have made yourself a spiritual warrior. I am reading "The Tibetan Book of Living and Dying" which is about how acknowledging and becoming intimate with our mortality transforms our living. Becoming a warrior means "trading our small minded struggle for security for a much vaster vision of fearlessness, openness, and genuine heroism." That vision teaches us to be at home in change and how to make impermanence our friend. If everything is impermanent, then all is emptiness, and everything is interdependent. The Buddha said the universe is a vast web of jewels, each with countless facets. Or a wave full of countless drops of water. We limit our minds-- and our compassion-- in our insistence that we have individual destinies.
ReplyDeleteGoing to try again; I think my entire comment disappeared, which is why I usually just reply to Amy but there is so much in this post! 1. Hair plans - OMG; I don't know whether I gasped or laughed (please no offense to anyone who asked about hair). 2. Can't think about the future - I only had the flu(ish) for a week and couldn't/wouldn't/didn't want to think beyond whether I might want one orange for "dinner." Exponential for you. 3. Terrycloth stymies radiation? Maybe it's partially leaded terrycloth, like that middle octane gasoline. 4. Being a tiny little file - sounds like they're treating you like the five blind men learning about an elephant (not too long ago read that again, to Karly). 5. Holistic attention - my rheumatologist thought this was so important, that "In 2011, Dr. Sayers received a Master of Arts in Pastoral Ministry from the Episcopal Theological Seminary of the Southwest and he believes strongly in the connection between body and soul and its importance in caring for those with chronic rheumatic diseases." Take that, you little compartmentalizing medical profession.
ReplyDeleteThank you for reading and commenting and I would love to get your rheumatologist's name! - Amy
ReplyDeleteDear, dear Amy --
ReplyDeleteRe: your wholeness, and the need to look at our health holistically...I couldn't agree with you more!
Re: your photo...talk about "bright eyed and bushy tailed!" I am captivated by the expression on your face as you reveal your ABAProject.
Thank you for your blog.
Lots and lot of love your way!
My rheumatologist is Brian Sayers, M.D. https://www.seton.net/find_a_physician/sayers/brian
ReplyDeleteProfessor Adams,
ReplyDeleteI really enjoy reading your blogs. They are funny, strange, REAL, and hard to follow at times but always keep me thinking! Just like your class! I sometimes don't understand why you ask us questions and continue to say "yeah but WHY?" and never really give us an answer at the end. It's frustrating but cool. You kind of force me to think outside of the norm and I'm not use it but I like it. You are probably one of the most interesting, kind of weird, funny, blunt, but helpful teachers I've had. (you give the most feedback) Thanks for defeating the norm. If that makes sense...
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