Remember that movie where the doctor became the patient and realized he hadn't been as compassionate as he'd always thought himself to be??? I think he started to realize the value of treating people as a human being instead of just a patient history to be gathered and treated. Lets just say that there are lots of people at the Huntsman who have either been very well trained, or inately understand the value of treating the whole patient not just the disease. It's funny that you would feel the need to be comforted and reassured by the people who are taking care of the technical details of treating your disease, but I remember several times when human touch was just the thing I needed to be reassured--a doctor who reached out to hug me and comfort me after delivering bad news, or celebrate being finished...or just a touch of the hand to connect.
Debbie in Radiation instinctively had the gift of touch--I can still remember laying on the radiation table waiting to be shifted into the right position when a new tech walked into the room, gently touched my arm and introduced herself. I immediately shifted from patient mode to real human being mode--from a name on a chart to a real person needed real treatment--from a body part in need of radiation, to a whole person trying to heal. There was an immediate release of my worries and a sense of calm that someone really cared about me--When I commented to her about how comforting it was she mentioned that in all her experience she'd only had one patient ask her not to touch--too bad they were that stiff--they missed a chance to feel like a human being instead of a patient being. I was sad when Debbie had to leave to be a patient herself (luckily not for any life threatening issues)--I missed her daily touch on my arm or leg to reassure me that she was looking out for my best interests. One other nurse had that gift of touch--I had lots of great nurses take care of me when I had my mastectomies done--but the one I instinctively loved the most was the one who comforted me with a light stroke down my arm when I was waking up from anesthesia, or needing more pain meds. Too bad our society has become paranoid to touch for fear of false allegations--human touch might be the medicine we need the very most!
Monday, October 13, 2008
Disco Bras and such
On my desk for the last few months are the notes to myself of things I didn't want to forget about my cancer experience--there are things that I'd rather forget...like the moments I have been less than grateful to be going through daily tortures of sunburns or cranky that I'm a cancer patient in the first place. Let's just say that it begins to feel a bit unfair when most of the patients waiting in front of you or after you are at least 20 years older than you (or even way more than that) and then just when you are feeling picked on you see someone even younger than you wandering around in one of those lovely gaping hospital gowns--bald head revealing that his/her chemo was way worse than yours. I prefer to stay in the "pity party" mode, seeing only the old, old guys in the men only waiting area waiting for prostate radiation--but the reality is that I'm not the only person feeling picked on by cancer--there seem to be lots of us out there and we seem to come in every color, shape and age...
So rather than dwell on the not so hot things about having cancer I should tell you that I had a few moments of joy on the radiation table--I mean--not everyone gets the chance to experience a disco bra in radiation. Okay, so it really wasn't a disco bra, but calling it my disco bra made the daily trips to radiation seem way less mundane than getting up everyday, trying to squeeze in some form of moderate exercise (walking up and down the stairs counts?) getting the kids off to school and trying to at least clean up the breakfast dishes before it was time to jump in the car and head off to the radiation lab. I did have the perk of Valet Parking my vehicle--but believe me it's worth it to park your own car and say you are a visitor and not a patient! The gals at the front desk soon called me by name and smiled as I checked in--commenting on a cute necklace or cute new shirt. Funny that I would dress up for my appointments instead of wearing sweats...but somehow it made me feel more human to dress up and head to my toture session pretending like I was headed off to lunch with my friends, or to a daily job at the office.
My awesome team of techs were always ready to "invite" me back to the room--and always willing to answer my endless stream of questions. I must even admit that I would think of things to talk about with my "team" because finding out about their lives seemed like much more fun than the reality that I was just one of hundreds of people they treat on a yearly basis. I found out that one of the techs is my neighbor. I drive past his street multiple times a day and wonder if I'll ever bump into him at the grocery store. We shared stories about our kids, vacations, life, and daily adventures. I started to think of them as friends rather than just people doing their jobs, but I'm still grounded enough to know that I'm just a blip in the stream of people that they see--the mental image of them as friends was helpful for my mental stability--but not necessary for theirs.
And that brings me back to the disco bra--which you've all been dying to hear about--After week one of radiation and a quick skin check by the radiologist it was determined that the rays just weren't quite intense enough and they needed to bump the burn up a notch or two--hence the disco bra--or more realistically I should call it my chain mail bra, but disco bra sounds more exciting so I'm sticking with it. Lindsay came in with a smile and a shiny square of gold metal chain mail (seriously like the stuff a knight would wear) and after carefully covering me with saran wrap she would arrange the "disco bra" so that the radiation would be more intense. Lights turned down low and music turned on (not usually of the disco variety)--and off the techs would go to watch me on the computer monitor and leave me and the radiation rays to disco away--16 whole seconds of radiation 8 from one angle and 8 from the other--and the techs would come back in and help me sit up and send me off to do the daily disco of taking care of the family and the house--even that seems more exciting if you know you've started the day with a disco bra!
So rather than dwell on the not so hot things about having cancer I should tell you that I had a few moments of joy on the radiation table--I mean--not everyone gets the chance to experience a disco bra in radiation. Okay, so it really wasn't a disco bra, but calling it my disco bra made the daily trips to radiation seem way less mundane than getting up everyday, trying to squeeze in some form of moderate exercise (walking up and down the stairs counts?) getting the kids off to school and trying to at least clean up the breakfast dishes before it was time to jump in the car and head off to the radiation lab. I did have the perk of Valet Parking my vehicle--but believe me it's worth it to park your own car and say you are a visitor and not a patient! The gals at the front desk soon called me by name and smiled as I checked in--commenting on a cute necklace or cute new shirt. Funny that I would dress up for my appointments instead of wearing sweats...but somehow it made me feel more human to dress up and head to my toture session pretending like I was headed off to lunch with my friends, or to a daily job at the office.
My awesome team of techs were always ready to "invite" me back to the room--and always willing to answer my endless stream of questions. I must even admit that I would think of things to talk about with my "team" because finding out about their lives seemed like much more fun than the reality that I was just one of hundreds of people they treat on a yearly basis. I found out that one of the techs is my neighbor. I drive past his street multiple times a day and wonder if I'll ever bump into him at the grocery store. We shared stories about our kids, vacations, life, and daily adventures. I started to think of them as friends rather than just people doing their jobs, but I'm still grounded enough to know that I'm just a blip in the stream of people that they see--the mental image of them as friends was helpful for my mental stability--but not necessary for theirs.
And that brings me back to the disco bra--which you've all been dying to hear about--After week one of radiation and a quick skin check by the radiologist it was determined that the rays just weren't quite intense enough and they needed to bump the burn up a notch or two--hence the disco bra--or more realistically I should call it my chain mail bra, but disco bra sounds more exciting so I'm sticking with it. Lindsay came in with a smile and a shiny square of gold metal chain mail (seriously like the stuff a knight would wear) and after carefully covering me with saran wrap she would arrange the "disco bra" so that the radiation would be more intense. Lights turned down low and music turned on (not usually of the disco variety)--and off the techs would go to watch me on the computer monitor and leave me and the radiation rays to disco away--16 whole seconds of radiation 8 from one angle and 8 from the other--and the techs would come back in and help me sit up and send me off to do the daily disco of taking care of the family and the house--even that seems more exciting if you know you've started the day with a disco bra!
Aftermath
So the reality that cancer is a permanent thought in my brain has been harder to cope with than I imagined. Somehow I thought this might fade into my memory the way the pain of a broken arm fades once the cast is off and full use of the arm is regained. Not so lucky....the word cancer remains in the daily vocabulary of myself, my family, and friends, and a part of my daily existence--a box of cold cereal with a breast cancer ribbon prominently displayed, a small box of pink tic tacs for my purse, I'm beginning to think that there is not a product on the market that hasn't committed a donation to the Susan Komen foundation for Breast Cancer research....and I'm positive that it's a successful campaign judging just from the number of items that go into my cart on even the shortest trip to the grocery store. Let's not forget that the number of pink items increases exponentially if I take one of my children in the store!
The fact that my diagnosis occurred one year ago on October 2, 2007 at the beginning of breast cancer awareness month means that every anniversary of my diagnosis will be marked with a flood of pink into the stores and signs and posters reminding me that I am one of the lucky ones whose cancer was detected early...but unlucky in the fact that they found breast cancer in the first place...but lucky in the fact that a yearly exam sent me to the mammogram machine, and lucky in the fact that I chose to do the mastectomy which lead to the discovery of the chemo inducing 1.2 cm invasive tumor that lurked undetected by the mammogram or the MRI. Hardly a day passes that I don't think of my surgeon looking me straight in the eye and saying "you do realize that you just got another shot at life"--it's a sobering thought to have rumbling around in your brain...surfacing everytime you have a spare moment to contemplate the blessing of still being alive and healthy.
In some ways I have this euphoria that I'm alive and yet, I also have this tremendous sadness that I can't live in my pre-cancer state of naivette: that state when I thought my health was controllable and influenced mostly by my actions or lack thereof. Now I have the bald reality staring me down--I have no present control over my genes and their actions and while the magazines and reports are full of suggestions like "women who exercise have a 40% reduction in their risk of breast cancer" that statistic gives me no comfort or satisfaction or feeling of relief. If I had read those lists 2 years ago, I would have put myself squarely in the very low risk category...I had my babies young, I nursed my babies, I exercised, kept my weight under control, ate lots of fruits and veggies, didn't have family members with breast cancer... it's sort of like playing OLD MAID with Andria, I can be ahead the whole entire game, have stacks of matches stored up, but if I pick the old maid out of her hand at the last minute I still loose! I seem to handle loosing a card game okay, but I'm not so hot at handling the loss of faith in my body to do what it should!
I used to consider myself a happy optimistic person--and while I'm still happy (most of the time) and optimistic (most of the time) I feel a little more like a bi-polar personality, flip-flopping between euphoria and anger/sadness at random times and in random places. I find myself wondering more often if I'm really spending time on the things that matter, if there was some way I could have avoided lossing my temper, or have been more gentle and patient. Shouldn't I have enough perspective to let go of the small stuff and focus on the big picture? Shouldn't I be better at enjoying the little moments of life and letting go of irritations and offenses? Maybe all I accomplished in the last year besides fighting cancer was creating a whirlwind out of my emtions-I used to think I had a plan, direction, and trajectory for my life...and now I'm not so sure that I have anything figured out--and that makes it hard to live with me--for myself, my spouse and my kids!
How do I articulate that cancer has changed my view of the world and my view of myself and my view of life in general? How do I express my joy at living and my frustration with lingering fatigue? How do I express my grattitude for the gift of life, and my fear that the cancer might return? How can I explain to my child that the cancer I have is hopefully permanently in remission, but the person in the movie died from cancer that spread to another area--to a 7 year old Cancer is all the same! How can I explain the sadness that passes over me when my child says "when I have kids and you are a grandma" and I have the thought " I sure hope I get to be a grandma"...then I realize that before October 2, 2007 I never, ever, questioned the fact that I would be the most amazing, doting grandmother--because my long life was inevitable. How do I convey my sadness that at age 39 I'm wondering how many birthdays I will get to celebrate (while optimistically thinking I'll have tons) and then just as quickly I am mad at myself for feeling ungrateful--I know lots of Cancer friends that won't get nearly as many birthdays as I will. It feels almost wrong to be so happy that my cancer was found early when friends my own age or younger have worse pronosises.
I hit my one year from diagnosis mark and went to celebrate with my family--a toast with fruit topped frozen yogurt that I have a long and healthy future to look forward to, yet my emotions feel raw and on the surface just waiting to be exposed. I shed tears as I went to meet with my internist one year after she sent me for a mammogram--it was too real and heart wrenching to remember the ease with which I went to my appointment, the lack of fear I had going to the mammogram, the pinch of fear at having the biopsy and the heartbreaking day of telling my kids and family that I had breast cancer--Raw and Real to remember meeting the plastic surgeon and hearing about microsurgical options that weren't really practical options for me, seeing my scars for the first time, not being able to hug my kids, and the list could go on for days. It took me a couple of days and lots of tears to get over that day of remembering, and just writing about it reopens the wounds. And as I go about checking back in with my oncologist, or see my radiologist at a bike ride, or ask my gynecologist to join my cancer team (gotta watch for endometrial cancer now that I'm on tamoxifen) I realize how much my life has changed for better and for worse. Now that I'm in the "maintenance" stage--I'm wondering what medicine there is for maintaining a balance between my emotions of sadness and loss of innocence and my joy and gratitude for a life to live--somehow a pill just doesn't seem enough to process all the emotions and thoughts that move through my brain on a daily basis. So check in tomorrow--I could be teary eyed, or laughing; joyful or fearful; cranky or sassy...but no matter what emotion fills the moment it is who I am at this point in time...and I'm still moving forward.
The fact that my diagnosis occurred one year ago on October 2, 2007 at the beginning of breast cancer awareness month means that every anniversary of my diagnosis will be marked with a flood of pink into the stores and signs and posters reminding me that I am one of the lucky ones whose cancer was detected early...but unlucky in the fact that they found breast cancer in the first place...but lucky in the fact that a yearly exam sent me to the mammogram machine, and lucky in the fact that I chose to do the mastectomy which lead to the discovery of the chemo inducing 1.2 cm invasive tumor that lurked undetected by the mammogram or the MRI. Hardly a day passes that I don't think of my surgeon looking me straight in the eye and saying "you do realize that you just got another shot at life"--it's a sobering thought to have rumbling around in your brain...surfacing everytime you have a spare moment to contemplate the blessing of still being alive and healthy.
In some ways I have this euphoria that I'm alive and yet, I also have this tremendous sadness that I can't live in my pre-cancer state of naivette: that state when I thought my health was controllable and influenced mostly by my actions or lack thereof. Now I have the bald reality staring me down--I have no present control over my genes and their actions and while the magazines and reports are full of suggestions like "women who exercise have a 40% reduction in their risk of breast cancer" that statistic gives me no comfort or satisfaction or feeling of relief. If I had read those lists 2 years ago, I would have put myself squarely in the very low risk category...I had my babies young, I nursed my babies, I exercised, kept my weight under control, ate lots of fruits and veggies, didn't have family members with breast cancer... it's sort of like playing OLD MAID with Andria, I can be ahead the whole entire game, have stacks of matches stored up, but if I pick the old maid out of her hand at the last minute I still loose! I seem to handle loosing a card game okay, but I'm not so hot at handling the loss of faith in my body to do what it should!
I used to consider myself a happy optimistic person--and while I'm still happy (most of the time) and optimistic (most of the time) I feel a little more like a bi-polar personality, flip-flopping between euphoria and anger/sadness at random times and in random places. I find myself wondering more often if I'm really spending time on the things that matter, if there was some way I could have avoided lossing my temper, or have been more gentle and patient. Shouldn't I have enough perspective to let go of the small stuff and focus on the big picture? Shouldn't I be better at enjoying the little moments of life and letting go of irritations and offenses? Maybe all I accomplished in the last year besides fighting cancer was creating a whirlwind out of my emtions-I used to think I had a plan, direction, and trajectory for my life...and now I'm not so sure that I have anything figured out--and that makes it hard to live with me--for myself, my spouse and my kids!
How do I articulate that cancer has changed my view of the world and my view of myself and my view of life in general? How do I express my joy at living and my frustration with lingering fatigue? How do I express my grattitude for the gift of life, and my fear that the cancer might return? How can I explain to my child that the cancer I have is hopefully permanently in remission, but the person in the movie died from cancer that spread to another area--to a 7 year old Cancer is all the same! How can I explain the sadness that passes over me when my child says "when I have kids and you are a grandma" and I have the thought " I sure hope I get to be a grandma"...then I realize that before October 2, 2007 I never, ever, questioned the fact that I would be the most amazing, doting grandmother--because my long life was inevitable. How do I convey my sadness that at age 39 I'm wondering how many birthdays I will get to celebrate (while optimistically thinking I'll have tons) and then just as quickly I am mad at myself for feeling ungrateful--I know lots of Cancer friends that won't get nearly as many birthdays as I will. It feels almost wrong to be so happy that my cancer was found early when friends my own age or younger have worse pronosises.
I hit my one year from diagnosis mark and went to celebrate with my family--a toast with fruit topped frozen yogurt that I have a long and healthy future to look forward to, yet my emotions feel raw and on the surface just waiting to be exposed. I shed tears as I went to meet with my internist one year after she sent me for a mammogram--it was too real and heart wrenching to remember the ease with which I went to my appointment, the lack of fear I had going to the mammogram, the pinch of fear at having the biopsy and the heartbreaking day of telling my kids and family that I had breast cancer--Raw and Real to remember meeting the plastic surgeon and hearing about microsurgical options that weren't really practical options for me, seeing my scars for the first time, not being able to hug my kids, and the list could go on for days. It took me a couple of days and lots of tears to get over that day of remembering, and just writing about it reopens the wounds. And as I go about checking back in with my oncologist, or see my radiologist at a bike ride, or ask my gynecologist to join my cancer team (gotta watch for endometrial cancer now that I'm on tamoxifen) I realize how much my life has changed for better and for worse. Now that I'm in the "maintenance" stage--I'm wondering what medicine there is for maintaining a balance between my emotions of sadness and loss of innocence and my joy and gratitude for a life to live--somehow a pill just doesn't seem enough to process all the emotions and thoughts that move through my brain on a daily basis. So check in tomorrow--I could be teary eyed, or laughing; joyful or fearful; cranky or sassy...but no matter what emotion fills the moment it is who I am at this point in time...and I'm still moving forward.
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