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.
Friday, June 13, 2008
Last Day HipHipHooray!!
HipHipHooray was a common phrase my mom used whenever we had good news at our house when we were kids...and today I am yelling the biggest Hip Hip Hooray!!! as it was my last day of radiation! As Andria puts it I "can share germs" now and to her that means life is back on track and we need to celebrate--like my hips really need lots of chocolate and icecream today!
Believe it or not I do have feelings of happiness and sadness today--
Top five Sad things:
5. I don't have my daily commute to listen to a book on tape, or NPR or music--my choice, not the kids' choice.
4. No daily hope that I can have lunch with my husband since he works "just over there" at the U and might have a chance to escape the OR just long enough to have lunch with me!
3. All the support of my vast fan club in all its various forms and at all its random times.
2. I'm losing the excuse --" I don't have it all together because I have Breast Cancer!!"
1. I said goodbye today to all my Friends in the Radiation department who have smiled, waved, chatted, comforted, listened, cheered, and supported me for the last 33 weekdays of my life. They've seen more of me than they've wanted and they can still look me in the eyes and talk to me about the commonalities of life that we share. They've made me feel like Jenifer--not just a random nameless patient...although I am aware that the reality is that the impression they have made on me will last longer than the impression I have made on them (I don't expect them to remember every single patient--but I can pretend that they will remember me!)
Top five happy feelings:
5. No more daily commutes, speeding to the U to be on time for my tanning session--bottom line is that I'm pretty hopeless at being "on time" 5 days a week to anything!
4. I can stay home and enjoy a summer sleep- in and snuggle and read and talk with my kids in the mornings like I always have in summers past! Bonus--I appreciate what used to be the normal routine!
3. I might have time to actually exercise, shower, read the paper over breakfast and throw in a load of laundry before I have to run out the door to do something important! Laundry loads washed daily??? Never thought I would miss the simplicity of having time to do that!
2. I have two and 1/2 hours every day for the rest of my life that I haven't had for the last 33 weekdays to vacuum a floor, dust off a bookshelf, read a book, work in my yard, answer emails, call my siblings, gaze into space, sleep-in, talk to a friend, breath deeply, go for a bike ride, do a random act of kindness, play airhockey, jump on the trampoline, chase a child learning to ride a bike, text my teenagers, date my husband.... Guess there still won't be enough hours in each day to do all the things I love, but I will profoundly enjoy everything I can squish into each 24 hour day!
1. I can finally say that I am a Cancer Survivor..not a Cancer Patient!!
I still have so much to tell you about what I have been doing for the past 33 days in the radiation lab, but for now I'll just say that I'm sooo grateful for access to incredible medical care...and I'm off to celebrate!!
Believe it or not I do have feelings of happiness and sadness today--
Top five Sad things:
5. I don't have my daily commute to listen to a book on tape, or NPR or music--my choice, not the kids' choice.
4. No daily hope that I can have lunch with my husband since he works "just over there" at the U and might have a chance to escape the OR just long enough to have lunch with me!
3. All the support of my vast fan club in all its various forms and at all its random times.
2. I'm losing the excuse --" I don't have it all together because I have Breast Cancer!!"
1. I said goodbye today to all my Friends in the Radiation department who have smiled, waved, chatted, comforted, listened, cheered, and supported me for the last 33 weekdays of my life. They've seen more of me than they've wanted and they can still look me in the eyes and talk to me about the commonalities of life that we share. They've made me feel like Jenifer--not just a random nameless patient...although I am aware that the reality is that the impression they have made on me will last longer than the impression I have made on them (I don't expect them to remember every single patient--but I can pretend that they will remember me!)
Top five happy feelings:
5. No more daily commutes, speeding to the U to be on time for my tanning session--bottom line is that I'm pretty hopeless at being "on time" 5 days a week to anything!
4. I can stay home and enjoy a summer sleep- in and snuggle and read and talk with my kids in the mornings like I always have in summers past! Bonus--I appreciate what used to be the normal routine!
3. I might have time to actually exercise, shower, read the paper over breakfast and throw in a load of laundry before I have to run out the door to do something important! Laundry loads washed daily??? Never thought I would miss the simplicity of having time to do that!
2. I have two and 1/2 hours every day for the rest of my life that I haven't had for the last 33 weekdays to vacuum a floor, dust off a bookshelf, read a book, work in my yard, answer emails, call my siblings, gaze into space, sleep-in, talk to a friend, breath deeply, go for a bike ride, do a random act of kindness, play airhockey, jump on the trampoline, chase a child learning to ride a bike, text my teenagers, date my husband.... Guess there still won't be enough hours in each day to do all the things I love, but I will profoundly enjoy everything I can squish into each 24 hour day!
1. I can finally say that I am a Cancer Survivor..not a Cancer Patient!!
I still have so much to tell you about what I have been doing for the past 33 days in the radiation lab, but for now I'll just say that I'm sooo grateful for access to incredible medical care...and I'm off to celebrate!!
Thursday, May 22, 2008
Few random tidbits I've thought of blogging, but napped instead
So back when I started this radiation process I had all these thoughts of what I should blog about...but since I was still fresh off of Chemo I was dragging a bit much to stay up late and write..and all my waking moments seem to revolve around doing just the basics (plus a little stamping and a few trips to bowl with my alliance friends) Somehow those appointments at Huntsman seem to throw my life as a "lady of leisure" into tumult and I am a lady of dashing from one task to the next--but smiling that I can actually dash!
There didn't seem to be much of a break between Chemo and the radiation process but I did have the chance to do a walk through with my friend Susan who started her radiation just before my last chemo--it was nice to know what I was getting myself into and the one thing I remember most was listening to the big steel door clang shut as the techs left her in the room and turned on the machines to make sure they were lined up just right--that room was cold and big..and the clank of the door seemed ominous as if sealing the dangerous stuff in the room with you like something from a futuristic horror film. I just realized a few radiations ago that I never hear the door clank at the Huntsman..but I have looked, it is big and steel with a large "warning radiation" symbol front and center--one of these days I'll remember to ask if they shut it when they head out to turn on the radiation.
One thing Susan didn't prepare me for was that it would hurt when they did my tattoos. I had been harassing my kids for weeks about what I was going to get tattooed on my left breast...butterflies, hearts, KJ, a skull and crossbones...anything I could to torment them. Ryan was the most bugged by my teasing...perhaps because there is a part of him that knows I have a wicked side and that I might not just be teasing! I was stamping with a few girlfriends the day before my tattoo appt and dramatically I mentioned that I might get "KEN" emblazoned acrossed my chest. My sweet friend questioned "TEN???" and my reply was quick "yep, a 1o over the left breast and a 9 over the right since it is missing its nipple!" This was getting to be too much fun!
So the first thing I did when I met with my tattoo artist was to ask if she could tattoo something nice for me...she assured me she could, but that she wasn't a very good artist, so I opted for the regular blue ink dots. Once she had me marked and checked out by the doc, she dabbed some ink on the spots and promptly jabbed me with something pokey! Ouch!! No one mentioned that it hurt! When I ouched she said quickly--"sorry about that, I had a patient once who had lots of real tattoos and she told me these hurt worse than getting the real deal" I don't know if that's true...but it was definitely worse than waxing my legs and I don't plan to repeat either experience!
Just to make things interesting I did stop by Zurchers to stock up on a few tattoos before I went home--I had some good pirate ones, but somehow lost them in the car before I got home...but was saved by my neighbor who raided her son's collection to provide me with a great dragonfly which I put on the most visible tattoo and then added a frog on a lily pad, a gecko, a butterfly and a hibiscus blossom to cover each of my dots--Ryan raised his eye brow for at least a minute (see, he really doesn't trust me to obey the rules!) and Cathryn was immediately unimpressed with my "plastic border" that made it obvious that I was faking (15 years olds DO know everything!). Rachel and Andria were the most impressed...and Ken sort of liked them too, although I'm sure he would have like the "10" and "9" even better!
There didn't seem to be much of a break between Chemo and the radiation process but I did have the chance to do a walk through with my friend Susan who started her radiation just before my last chemo--it was nice to know what I was getting myself into and the one thing I remember most was listening to the big steel door clang shut as the techs left her in the room and turned on the machines to make sure they were lined up just right--that room was cold and big..and the clank of the door seemed ominous as if sealing the dangerous stuff in the room with you like something from a futuristic horror film. I just realized a few radiations ago that I never hear the door clank at the Huntsman..but I have looked, it is big and steel with a large "warning radiation" symbol front and center--one of these days I'll remember to ask if they shut it when they head out to turn on the radiation.
One thing Susan didn't prepare me for was that it would hurt when they did my tattoos. I had been harassing my kids for weeks about what I was going to get tattooed on my left breast...butterflies, hearts, KJ, a skull and crossbones...anything I could to torment them. Ryan was the most bugged by my teasing...perhaps because there is a part of him that knows I have a wicked side and that I might not just be teasing! I was stamping with a few girlfriends the day before my tattoo appt and dramatically I mentioned that I might get "KEN" emblazoned acrossed my chest. My sweet friend questioned "TEN???" and my reply was quick "yep, a 1o over the left breast and a 9 over the right since it is missing its nipple!" This was getting to be too much fun!
So the first thing I did when I met with my tattoo artist was to ask if she could tattoo something nice for me...she assured me she could, but that she wasn't a very good artist, so I opted for the regular blue ink dots. Once she had me marked and checked out by the doc, she dabbed some ink on the spots and promptly jabbed me with something pokey! Ouch!! No one mentioned that it hurt! When I ouched she said quickly--"sorry about that, I had a patient once who had lots of real tattoos and she told me these hurt worse than getting the real deal" I don't know if that's true...but it was definitely worse than waxing my legs and I don't plan to repeat either experience!
Just to make things interesting I did stop by Zurchers to stock up on a few tattoos before I went home--I had some good pirate ones, but somehow lost them in the car before I got home...but was saved by my neighbor who raided her son's collection to provide me with a great dragonfly which I put on the most visible tattoo and then added a frog on a lily pad, a gecko, a butterfly and a hibiscus blossom to cover each of my dots--Ryan raised his eye brow for at least a minute (see, he really doesn't trust me to obey the rules!) and Cathryn was immediately unimpressed with my "plastic border" that made it obvious that I was faking (15 years olds DO know everything!). Rachel and Andria were the most impressed...and Ken sort of liked them too, although I'm sure he would have like the "10" and "9" even better!
Radiation update
Thanks to all who have continued to check on my progress and keep me in your prayers...This update is for you!
Tomorrow marks the halfway point for me in Radiation!! 19 down (tomorrow by 11:15) and 19 to go. Here's the scoop on what I've been up to every weekday for the last three weeks. Kids up and off to school, Jen throws on clothes and hurries out the door for a 10:15 appt...pull up to Huntsman Cancer Research Center...give keys to complementary valet parking (Huntsman seems to have all the little details that make you feel like a VIP not a patient) and walk through the revolving door to check in at the front desk. If Susan is there she always calls me by name and says, "I'll let them know you're here" the other secretary always needs me to remind her of my name even though I see her almost every single day too...I think Susan adds the personal touch because she was once a patient at Huntsman too.
With check-in complete, I walk through the door that you usually only walk through when the nurse calls your name..but remember, I'm a VIP...I get to walk through on my own! I say hi to the nurses at the nurses station and Diane always calls "Hi, Jen" from the back office...like we've been friends for years. Really, I've only known her for two weeks...we became fast friends over answering machines when somehow I managed to get in and out of the radiation dressing room and past the front desk and nurses station for 4 entire days without them realizing I was "the Jenifer Johnson" who was supposed to meet with Dr. Gaffney on Monday. The day I came in and introduced myself as "the Jenifer that Diane was trying to contact" she smiled like we'd been lunching for years and still acts that way everytime I see her.
Once I say hello to my fan club I head straight to the dressing room to put on my radiation fashion garb, otherwise known as a gaping gown! They make those things big enough to go around me twice and no matter how I tie the ties...they are always gaping. At least the gaps are in the front so I can see when I'm flashing the empty waiting room ...I say empty because in the 18 days I have been there only once have I shared the waiting room with another patient--those radiation techs are right on schedule! I lock my precious possessions in the third locker with the lime green key bungee and slip the key bracelet around my wrist...I find it funny that I always lock my stuff in the same locker...as I find doing anything the same everyday impossible in every other aspect of my life.
I head to the waiting room and sit, tv off (I savor every moment of peace and quiet in life these days), until Debbie, Lindsay or Glen opens the door, smiles and says "we're ready for you". They move people in and out of radiation room 2 like a well oiled machine, all the while chatting with me like we've been talking for the last two hours. In through the huge steel door and down a dim little hall covered with bright pictures of flowers and climb onto my radiation "bed"--it moves up and down and back and forth so I try to think of it as a "ride", the pillow goes under my knees and if I forget and cross my feet, Lindsay uncrosses them and hooks the rubberband around my toes to keep me from repositioning myself untintentionally...and then the real positioning for my "tanning session" begins.
If there is a new tech in for the day they always draw circles around my tatooes, the pros just darken the tattoe with a sharpie so they can see once the lights turn low...they pull and tug gently on my gown to make sure I am lined up JUST RIGHT and they say to each other, "I need just a millimeter this way, or an inch your way...Lindsay always jokes that Glen is too strong and when she says to tug on his side of the gown to move me just a smidge it's always too far. This is the one time when I am soo grateful that someone out there was a Geometry nerd because they are giving out angles and numbers like my high school Geometry teacher, Miss Howe, who used to proclaim " Don't you just love Theoroms--they're sooo cool!"
Once they have all the rays lined up they make sure the music is on (Wailing Jennies, Bob Marley, random music off their itunes accounts) turn down the lights and head out the door. I lay there in my mold without moving a muscle and wait for the machine to start buzzing the warning that the radiation is on--and I can't seem to stop myself from counting even though I know by this time that it buzzes for precisely 8 seconds before it rotates to the left and buzzes for 8 more seconds...No radiation from directly above as that would cause permanent damage to the lungs.
Then the door opens and footsteps come in and someone tells me I can put my arms back down (they've been over my head resting perfectly in my personal mold). Pillow comes out from under the legs, rubberband off toes and I am given a hand to help me sit up. From valet parking to valet retrieval I'd say I'm there for a complete 30 minutes every day...plus an extra 15 or 20 the day that I meet with the Doctor for a skin check. I spend more time commuting than I actually spend getting zapped, but overall I'd say it's more like a VIP visit than a torture session with the 180 rads that are directed at any possible remnants of cancer--did I mention the volunteers that are constantly making rounds of the waiting rooms offering snacks and drinks?? Someone remind me that I'm really at a hospital!
Tomorrow marks the halfway point for me in Radiation!! 19 down (tomorrow by 11:15) and 19 to go. Here's the scoop on what I've been up to every weekday for the last three weeks. Kids up and off to school, Jen throws on clothes and hurries out the door for a 10:15 appt...pull up to Huntsman Cancer Research Center...give keys to complementary valet parking (Huntsman seems to have all the little details that make you feel like a VIP not a patient) and walk through the revolving door to check in at the front desk. If Susan is there she always calls me by name and says, "I'll let them know you're here" the other secretary always needs me to remind her of my name even though I see her almost every single day too...I think Susan adds the personal touch because she was once a patient at Huntsman too.
With check-in complete, I walk through the door that you usually only walk through when the nurse calls your name..but remember, I'm a VIP...I get to walk through on my own! I say hi to the nurses at the nurses station and Diane always calls "Hi, Jen" from the back office...like we've been friends for years. Really, I've only known her for two weeks...we became fast friends over answering machines when somehow I managed to get in and out of the radiation dressing room and past the front desk and nurses station for 4 entire days without them realizing I was "the Jenifer Johnson" who was supposed to meet with Dr. Gaffney on Monday. The day I came in and introduced myself as "the Jenifer that Diane was trying to contact" she smiled like we'd been lunching for years and still acts that way everytime I see her.
Once I say hello to my fan club I head straight to the dressing room to put on my radiation fashion garb, otherwise known as a gaping gown! They make those things big enough to go around me twice and no matter how I tie the ties...they are always gaping. At least the gaps are in the front so I can see when I'm flashing the empty waiting room ...I say empty because in the 18 days I have been there only once have I shared the waiting room with another patient--those radiation techs are right on schedule! I lock my precious possessions in the third locker with the lime green key bungee and slip the key bracelet around my wrist...I find it funny that I always lock my stuff in the same locker...as I find doing anything the same everyday impossible in every other aspect of my life.
I head to the waiting room and sit, tv off (I savor every moment of peace and quiet in life these days), until Debbie, Lindsay or Glen opens the door, smiles and says "we're ready for you". They move people in and out of radiation room 2 like a well oiled machine, all the while chatting with me like we've been talking for the last two hours. In through the huge steel door and down a dim little hall covered with bright pictures of flowers and climb onto my radiation "bed"--it moves up and down and back and forth so I try to think of it as a "ride", the pillow goes under my knees and if I forget and cross my feet, Lindsay uncrosses them and hooks the rubberband around my toes to keep me from repositioning myself untintentionally...and then the real positioning for my "tanning session" begins.
If there is a new tech in for the day they always draw circles around my tatooes, the pros just darken the tattoe with a sharpie so they can see once the lights turn low...they pull and tug gently on my gown to make sure I am lined up JUST RIGHT and they say to each other, "I need just a millimeter this way, or an inch your way...Lindsay always jokes that Glen is too strong and when she says to tug on his side of the gown to move me just a smidge it's always too far. This is the one time when I am soo grateful that someone out there was a Geometry nerd because they are giving out angles and numbers like my high school Geometry teacher, Miss Howe, who used to proclaim " Don't you just love Theoroms--they're sooo cool!"
Once they have all the rays lined up they make sure the music is on (Wailing Jennies, Bob Marley, random music off their itunes accounts) turn down the lights and head out the door. I lay there in my mold without moving a muscle and wait for the machine to start buzzing the warning that the radiation is on--and I can't seem to stop myself from counting even though I know by this time that it buzzes for precisely 8 seconds before it rotates to the left and buzzes for 8 more seconds...No radiation from directly above as that would cause permanent damage to the lungs.
Then the door opens and footsteps come in and someone tells me I can put my arms back down (they've been over my head resting perfectly in my personal mold). Pillow comes out from under the legs, rubberband off toes and I am given a hand to help me sit up. From valet parking to valet retrieval I'd say I'm there for a complete 30 minutes every day...plus an extra 15 or 20 the day that I meet with the Doctor for a skin check. I spend more time commuting than I actually spend getting zapped, but overall I'd say it's more like a VIP visit than a torture session with the 180 rads that are directed at any possible remnants of cancer--did I mention the volunteers that are constantly making rounds of the waiting rooms offering snacks and drinks?? Someone remind me that I'm really at a hospital!
Thursday, April 10, 2008
April Fools Day was really a day for celebration!
So the rumor is true--I'm done with Chemotherapy!!! I have a graduation certificate and warm lap quilt (thanks to the "Sisters of the Lone Peak Stake") to prove it...and the nurses sang me a graduation song (to the tune of Happy B-Day). It went something like this: Congratulations to you, your chemotherapy is through, We wish you good health, and Happiness too! I hugged them all and said "Thanks, I hope to never see you here again!"--and they agreed!
Once the infusion was over and the excitement of the moment was over--it was on to the reality of feeling yucky for the next few days...and totally exhuasted....and a total chemo brain! Now I know that all of you think that you have forgetful moments just like mine, but unless you've had chemo I will beg to differ. There is something different about chemo brain--it is more like pure glitches in the machinery or pure lapses of time and reality even when you are making a tremendous effort to keep a grip on it. Look it up...it is listed as a tangible side affect of chemo and to make matters worse Dr. Buys asked me how my chemo brain was doing...and offered to sign me up as a "chemo brain study participant" if things weren't looking better by my July 1 follow-up appointment.
Please, don't let me be eligible to be a participant in a chemo brain study...I really need to be functioning on "all 8 cylinders" as my husband would say--so that I can handle my three kids who are all playing soccer this season, plus one playing basketball on top of that and one child begging to be able to play! Suddenly I am extremely grateful that most of this cancer treatment has taken place during the dead of winter when only Ryan was playing basketball and the girls were taking a break from most of their obligations to sports. Now we are back to the crazy schedule of having all three of them practice on Thursday night...and various other practices happening on every other night of the week--and I'm trying to keep track of all those ins and outs of the house with only a partially functioning brain.
Did I mention that I am sooooo grateful that there are no more sessions of chemo to come??? Can't imagine the flood of phone calls from kids who have been left at soccer practice "who is coming to pick me up???" What, Who, Where....do I have 4 children??? are you talking to me...do you have the right number....OH, yeah....I'm remembering now--yesterday was chemo, I had the schedule all worked out....ooops then I forgot to call all those mom's to help me!!! Details, Details--
Chemo should have come with a big red label reading "chemo and motherhood calendars should never be mixed!" Arrange for surrogate mother for at least 4 days after the injestion of this infusion. This drug may cause: sleepiness, forgetfulness, nausea, crankiness and general confusion and a tendency to check out of reality for long periods of time. Memory glitches may never be retrieved--Take this Drug at your own risk...the management is not responsible for any actions contrived or percieved by the taker!!
I think maybe I could be eligible for damages--anyone know a good lawyer who will fight for me to recoup my losses?
Once the infusion was over and the excitement of the moment was over--it was on to the reality of feeling yucky for the next few days...and totally exhuasted....and a total chemo brain! Now I know that all of you think that you have forgetful moments just like mine, but unless you've had chemo I will beg to differ. There is something different about chemo brain--it is more like pure glitches in the machinery or pure lapses of time and reality even when you are making a tremendous effort to keep a grip on it. Look it up...it is listed as a tangible side affect of chemo and to make matters worse Dr. Buys asked me how my chemo brain was doing...and offered to sign me up as a "chemo brain study participant" if things weren't looking better by my July 1 follow-up appointment.
Please, don't let me be eligible to be a participant in a chemo brain study...I really need to be functioning on "all 8 cylinders" as my husband would say--so that I can handle my three kids who are all playing soccer this season, plus one playing basketball on top of that and one child begging to be able to play! Suddenly I am extremely grateful that most of this cancer treatment has taken place during the dead of winter when only Ryan was playing basketball and the girls were taking a break from most of their obligations to sports. Now we are back to the crazy schedule of having all three of them practice on Thursday night...and various other practices happening on every other night of the week--and I'm trying to keep track of all those ins and outs of the house with only a partially functioning brain.
Did I mention that I am sooooo grateful that there are no more sessions of chemo to come??? Can't imagine the flood of phone calls from kids who have been left at soccer practice "who is coming to pick me up???" What, Who, Where....do I have 4 children??? are you talking to me...do you have the right number....OH, yeah....I'm remembering now--yesterday was chemo, I had the schedule all worked out....ooops then I forgot to call all those mom's to help me!!! Details, Details--
Chemo should have come with a big red label reading "chemo and motherhood calendars should never be mixed!" Arrange for surrogate mother for at least 4 days after the injestion of this infusion. This drug may cause: sleepiness, forgetfulness, nausea, crankiness and general confusion and a tendency to check out of reality for long periods of time. Memory glitches may never be retrieved--Take this Drug at your own risk...the management is not responsible for any actions contrived or percieved by the taker!!
I think maybe I could be eligible for damages--anyone know a good lawyer who will fight for me to recoup my losses?
Quick Update...if quick is possible for me???
For days I've been thinking of all the things I should record in this blog of my cancer life....the topics seem endless-- 1-I'm tired of reading statements by perfectly healthy people that we need to quit thinking negative thoughts about cancer...because the world responds to negative vibes and that's why we haven't found a cure for cancer, 2- I'm just plain tired, 3-what great sports my spouse and kids have been during this ordeal, 4-I'm so happy to feel like getting out of bed before 8 am, 5- what psychological damage my kids are suffering because of my cancer, 6-Andria has turned into a death obsessed, fearful of anyone picking her up from kindergarten but me (and I forget to show up half the time) 6 year old child, 7-how grateful I am for supportive friends....the list that goes through my head of all the ways cancer has affected my life and all the things I am learning about myself and life in general seem to be flowing through my head constantly and I am a continual torrent of feeling grateful and then all the same bugged that I even have to deal with thoughts of never seeing grandchildren (I am planning to see them, but that nagging thought would never have crossed my mind at this age if cancer hadn't invaded my mind) pre-menopausal hormone flashes and PMS emotions all in the same day, feeling healthy and then spending my day rearranging doctor appts (do healthy people do that?).
Maybe I just have to admit that everyday seems like a crap shoot--I never know what emotions I am going to be dealing with from one moment to the next....One minute I'm feeling like I have things undercontrol and I have a great attitude and the next I am feeling so overwhelmed that I can barely breathe--did I mention that last week during chemo I forgot to arrange for someone to bring Andria home from Kindergarten and the school had to call me three times??? So I felt like the worst mother in the world after I dragged myself out of bed and drove the 2 blocks to the school and dragged myself (scary sweats and bad bed hair and all) into the school office to retrieve my child and cried myself into the driveway....and then when I asked Andria what she was going to do with a Mom that kept forgetting to pick her up...she answered without hesitation "I'll just call you to come get me and I'll still love you even when you forget". I'm hoping that she really is that forgiving and that I'm not insuring some therapist years of instant income!
And then on top of it all I listen to my amazing friend who is dealing with terminal breast cancer give me advice on how to prepare for radiation--like it's no big deal and it's just a regular part of life. I've yet to hear her say anything that isn't positive and productive in regards to dealing with this reality of her own mortality...and I wonder if I could be so positive if I really knew that I had a finite amount of time left to love my kids and husband and enjoy my life....and then today I heard of another young mom who is facing a breast cancer diagnosis....and all day I keep thinking about how hard it was to adjust to the fact that I had cancer and it wasn't just a bad April Fool's joke....and how adapting and rearranging life is such a hurdle to adapt to...and then I look around at all the hurdles that other people are facing and realize that life is one big course of hurdles and I am feeling like a seventh grader again--at a track meet and signed up by Coach Thomas to run the 220 hurdles and I'd never jumped a hurdle in my life. So I guess I'll do what I did back when I was 12 years old and thought I could do anything--I'll put on a smile and tie up my track shoes and run and jump like I have a clue what I'm doing... I didn't win the race and I don't think I showed enough potential for Coach to sign me up for hurdles again....but I didn't quit, pout, or cry on the sidelines--so there probably is hope for me to finish this race too...it may not be a graceful finish, but I plan to cross the line with a smile on my face and know that I can survive one more thing that I never knew I had the capacity to survive.
Maybe I just have to admit that everyday seems like a crap shoot--I never know what emotions I am going to be dealing with from one moment to the next....One minute I'm feeling like I have things undercontrol and I have a great attitude and the next I am feeling so overwhelmed that I can barely breathe--did I mention that last week during chemo I forgot to arrange for someone to bring Andria home from Kindergarten and the school had to call me three times??? So I felt like the worst mother in the world after I dragged myself out of bed and drove the 2 blocks to the school and dragged myself (scary sweats and bad bed hair and all) into the school office to retrieve my child and cried myself into the driveway....and then when I asked Andria what she was going to do with a Mom that kept forgetting to pick her up...she answered without hesitation "I'll just call you to come get me and I'll still love you even when you forget". I'm hoping that she really is that forgiving and that I'm not insuring some therapist years of instant income!
And then on top of it all I listen to my amazing friend who is dealing with terminal breast cancer give me advice on how to prepare for radiation--like it's no big deal and it's just a regular part of life. I've yet to hear her say anything that isn't positive and productive in regards to dealing with this reality of her own mortality...and I wonder if I could be so positive if I really knew that I had a finite amount of time left to love my kids and husband and enjoy my life....and then today I heard of another young mom who is facing a breast cancer diagnosis....and all day I keep thinking about how hard it was to adjust to the fact that I had cancer and it wasn't just a bad April Fool's joke....and how adapting and rearranging life is such a hurdle to adapt to...and then I look around at all the hurdles that other people are facing and realize that life is one big course of hurdles and I am feeling like a seventh grader again--at a track meet and signed up by Coach Thomas to run the 220 hurdles and I'd never jumped a hurdle in my life. So I guess I'll do what I did back when I was 12 years old and thought I could do anything--I'll put on a smile and tie up my track shoes and run and jump like I have a clue what I'm doing... I didn't win the race and I don't think I showed enough potential for Coach to sign me up for hurdles again....but I didn't quit, pout, or cry on the sidelines--so there probably is hope for me to finish this race too...it may not be a graceful finish, but I plan to cross the line with a smile on my face and know that I can survive one more thing that I never knew I had the capacity to survive.
Tuesday, March 18, 2008
Spring is in the air and in my step!
10:41 and I'm trying to decide if I should update my thousands of fans (haha) or just go crawl into bed??? But since I'm already at the computer I guess my fans win. Who needs beauty rest anyway?
Today the sun was out and it was feeling great to be outside, walking, and acting as if there is nothing to worry about except getting Cathryn to soccer practice on time, and getting to the three other appointments I have for the evening--made 2 out of 3 so we'll call it a sucess. Just as I was enjoying the adrenaline of the walk, the phone rings and I am told that practice really isn't at 5:30 like it usually is...didn't I get the email that it was at 4:45 so that a scrimmage game could happen at 6...I hate to tell the caller who is being so kind to follow up the email with a call that her email is in a box that seems to constantly read 208 new emails!!
Believe me it isn't because I am popular, but it doesn't help that soccer season for 3 kids is starting and the coaches are emailing me constantly with updates (today's soccer emails totalled 12), my alliance organization is getting ready to transition boards and I am the outgoing president, Ken's scout committee hasn't quite figured out that he has a new email address, I have 8 siblings and a Dad that are kind enough to check in with me, it is bracket time for the College Basketball extravaganza and my bowling league and my family think that I have enough intelligence to pick the winner, many kind friends are sending emails of encouragement, and every store that I have even thought of purchasing something from sends me a least a few emails before I have the time to sort the mail and send them to the junk pile.
Of all the things I thought I would have to deal with during cancer treatment, I never thought it will be a constantly overflowing email box, and the request to blog more often! A few years ago I could barely email anything and now it has turned into a valuable tool to communicate with friends from all over the US --and how lucky am I that I have friends from all my different moves who care enough to send a quick email and say that they are praying for me. Today I got an email from a babysitter from my childhood who I haven't seen in years, a friend that I was a Nanny with in CA, a friend I met as a newlywed in New Orleans, and a friend I have made through stamping. Before email that would have been impossible...but now my ability to keep in touch with so many is made easy by that click of the mouse that sends my blog to cyberspace and my email to someone else's inbox.
I was so worried about sitting too much and feeling nauseated and in reality--that part of my life seems minimal in comparison to just keeping the laundry piles from overtaking the house, keeping up with homework and carpool requirements of the kids and trying to find time to take a 30 minute walk everyday! Frankly, I didn't think I would feel good enough to do all that stuff and I'm ecstatic that I do!! Last year at this time I was probably whining to someone about the fact that my life was soooo busy and crazy that I didn't have time to sit and watch television. This year I'm ecstatic that I'm alive and feeling good enough to be busy and crazy and I never watched TV anyway so why start now!! It's funny that little Cancer word has given me such a huge paradigm shift. I'm so happy when I feel like getting out of bed in the morning and I actually look forward to the fact that my calendar is full of opportunities like going to the school to tutor a young reader, or correct math papers for the fourth graders or watch the kindergarten kids work on their "at" chunks, or sit at a middle school library book fair--last year those were things to cross off my list with a sigh of relief at the end of the day....and this year they are opportunities to see my kids in action and appreciate all the people who make their education possible. This year I am looking at my garden hoping I will have a few "feeling good" days that will also be "good weather" days so that I can pull all those dead perennial stalks up and watch for the signs of new life coming up from the roots. I must look like a goon because I love to smile and say "great" when someone asks me how I'm doing with a look of sympathy on their face--I'm so happy to be seeing the signs of spring in myself and in the great outdoors.
I don't want someone else suffering through chemo to think that I've gotten off without any bumps and bruises...but in the scheme of things I really am getting off pretty easy--my face is dry, acne prone and wrinkled more than ever...but my eyes work, and makeup covers the rest. My throat is constantly dry and tickley...but I can sing with a water bottle in hand and cheer as loud as the other obnoxious soccer moms! Half my hair is gone and half of what is left is now grey, but a good haircut makes it look thicker and after chemo, the colorist will fix the rest! My mouth get sores, but chocolate still tastes wonderful! My smeller is hyperactive, but the spring flowers are going to be awesome in a few weeks and then a hypersmeller will be a huge perk! I am tired and have to stay in bed for a few days after chemo, but that gives me lots of time to snuggle and hug my kids and read stories (or have them read when my brain can't concentrate) and nap! Menopause hasn't happened (darn) but maybe the tamoxifin will do the trick. My breasts have no feeling, but my husband thinks I look great! My brain is quite sketchy and I loose several days of memory with each round of chemo...but I have the best excuse for being a blonde scatterbrain for at least this year! I've found that I'm not as possessed by the clock, the to-do list, or the endless list of obligations, but I do find more pleasure in being able to show up, do and participate at whatever level I can on a particular day.
I actually feel sorry for that working stiff who is still trying to make his millions so that he can be really happy--not that I'm not still scheming about the future trips I want to take, and projects around the house I want to take on, but I've been clunked over the head just enough to remember that those aren't the things that make me really happy--but sitting at the dinner table and listening to my husband and kids talk about their day is. Seeing the bloom of a crocus through the snow, hearing the piano played by hands of all skill levels, feeling good enough to cook my own dinner, fold my own laundry and scrub my own toilet, walking on a spring afternoon--I'm remembering the simple pleasures of life. And all the rest will still be there when I'm done breathing deeply and soaking it all in.
Today the sun was out and it was feeling great to be outside, walking, and acting as if there is nothing to worry about except getting Cathryn to soccer practice on time, and getting to the three other appointments I have for the evening--made 2 out of 3 so we'll call it a sucess. Just as I was enjoying the adrenaline of the walk, the phone rings and I am told that practice really isn't at 5:30 like it usually is...didn't I get the email that it was at 4:45 so that a scrimmage game could happen at 6...I hate to tell the caller who is being so kind to follow up the email with a call that her email is in a box that seems to constantly read 208 new emails!!
Believe me it isn't because I am popular, but it doesn't help that soccer season for 3 kids is starting and the coaches are emailing me constantly with updates (today's soccer emails totalled 12), my alliance organization is getting ready to transition boards and I am the outgoing president, Ken's scout committee hasn't quite figured out that he has a new email address, I have 8 siblings and a Dad that are kind enough to check in with me, it is bracket time for the College Basketball extravaganza and my bowling league and my family think that I have enough intelligence to pick the winner, many kind friends are sending emails of encouragement, and every store that I have even thought of purchasing something from sends me a least a few emails before I have the time to sort the mail and send them to the junk pile.
Of all the things I thought I would have to deal with during cancer treatment, I never thought it will be a constantly overflowing email box, and the request to blog more often! A few years ago I could barely email anything and now it has turned into a valuable tool to communicate with friends from all over the US --and how lucky am I that I have friends from all my different moves who care enough to send a quick email and say that they are praying for me. Today I got an email from a babysitter from my childhood who I haven't seen in years, a friend that I was a Nanny with in CA, a friend I met as a newlywed in New Orleans, and a friend I have made through stamping. Before email that would have been impossible...but now my ability to keep in touch with so many is made easy by that click of the mouse that sends my blog to cyberspace and my email to someone else's inbox.
I was so worried about sitting too much and feeling nauseated and in reality--that part of my life seems minimal in comparison to just keeping the laundry piles from overtaking the house, keeping up with homework and carpool requirements of the kids and trying to find time to take a 30 minute walk everyday! Frankly, I didn't think I would feel good enough to do all that stuff and I'm ecstatic that I do!! Last year at this time I was probably whining to someone about the fact that my life was soooo busy and crazy that I didn't have time to sit and watch television. This year I'm ecstatic that I'm alive and feeling good enough to be busy and crazy and I never watched TV anyway so why start now!! It's funny that little Cancer word has given me such a huge paradigm shift. I'm so happy when I feel like getting out of bed in the morning and I actually look forward to the fact that my calendar is full of opportunities like going to the school to tutor a young reader, or correct math papers for the fourth graders or watch the kindergarten kids work on their "at" chunks, or sit at a middle school library book fair--last year those were things to cross off my list with a sigh of relief at the end of the day....and this year they are opportunities to see my kids in action and appreciate all the people who make their education possible. This year I am looking at my garden hoping I will have a few "feeling good" days that will also be "good weather" days so that I can pull all those dead perennial stalks up and watch for the signs of new life coming up from the roots. I must look like a goon because I love to smile and say "great" when someone asks me how I'm doing with a look of sympathy on their face--I'm so happy to be seeing the signs of spring in myself and in the great outdoors.
I don't want someone else suffering through chemo to think that I've gotten off without any bumps and bruises...but in the scheme of things I really am getting off pretty easy--my face is dry, acne prone and wrinkled more than ever...but my eyes work, and makeup covers the rest. My throat is constantly dry and tickley...but I can sing with a water bottle in hand and cheer as loud as the other obnoxious soccer moms! Half my hair is gone and half of what is left is now grey, but a good haircut makes it look thicker and after chemo, the colorist will fix the rest! My mouth get sores, but chocolate still tastes wonderful! My smeller is hyperactive, but the spring flowers are going to be awesome in a few weeks and then a hypersmeller will be a huge perk! I am tired and have to stay in bed for a few days after chemo, but that gives me lots of time to snuggle and hug my kids and read stories (or have them read when my brain can't concentrate) and nap! Menopause hasn't happened (darn) but maybe the tamoxifin will do the trick. My breasts have no feeling, but my husband thinks I look great! My brain is quite sketchy and I loose several days of memory with each round of chemo...but I have the best excuse for being a blonde scatterbrain for at least this year! I've found that I'm not as possessed by the clock, the to-do list, or the endless list of obligations, but I do find more pleasure in being able to show up, do and participate at whatever level I can on a particular day.
I actually feel sorry for that working stiff who is still trying to make his millions so that he can be really happy--not that I'm not still scheming about the future trips I want to take, and projects around the house I want to take on, but I've been clunked over the head just enough to remember that those aren't the things that make me really happy--but sitting at the dinner table and listening to my husband and kids talk about their day is. Seeing the bloom of a crocus through the snow, hearing the piano played by hands of all skill levels, feeling good enough to cook my own dinner, fold my own laundry and scrub my own toilet, walking on a spring afternoon--I'm remembering the simple pleasures of life. And all the rest will still be there when I'm done breathing deeply and soaking it all in.
Tuesday, March 4, 2008
"Survey Says????"
Disclaimer: WTMI will be in this blog!!
So one of the biggest dilemmas that I have now is trying to decide what to do with these appendages on the front of my person. Who knew that choosing a breast size would be waaaay harder than trying to find the perfect pair of blue jeans...you know, ones that fit just right on your hips and thighs at the same time, have the waistband in the proper spot to be comfortable, and look somewhat trendy at the same time. Yep, trying on cc's of saline is almost the same level of difficulty--especially when the Dr. comes in and asks " how many cc's do you want in today?" as if I walk around every day looking at women's chests trying to guess just how many cc's it would take to replicate that perfect size and shape taking into consideration that none of my own fatty tissue or breast tissue would be around to hold everything in place and fill in any gaps that the cc's couldn't.
So I'm trying to explain to Dr Agarwal that I want something like I had pre-mastectomy...I'm too lazy to go replace all my bras and clothes, so please can't I have something that fills in the darts on a tailored shirt, but doesn't make the buttons pop or gape?? Now I'm no plastic surgeon, but that sounds to me like a very reasonable request for a highly educated Dr. to perform--except that he has no personal experience with breasts...other than the silicon and saline types.
Now to make things just a little bit more complicated I have something akin to bicycle tubes (Dr. Agarwal's description when I asked him if they were like self healing mats used for sewing or stamping--yep, Ken likes that description!) filled with saline making my chest look as if it has never seen a scalpel. That description, of course, only applies to me with clothes on. Scars are healing incredibly well, but I would still attract some real attention on a nude beach in Brazil or Europe--and they wouldn't be looking at my incredibly white skin! My bike tubes have the interesting features of being highly durable, very stable, and inflatable to any size that my skin can accommodate--and my brain...I'm pretty sure my mental state can't handle anything as big as Dolly Parton (or remotely close!).
Remember that once upon a time I was a nice flat chested teen, a small/regular sort of college girl, a busty nursing mom, a depleted after nursing 4 babies mom, and an augmented post child bearing mom....it seems I've had a chance to try on every size from a training bra to a full C cup in my 38 years of being a female...so I should really know what I want, right?? But now throw into the pot that my current "expanders" are highly inflexible and contain a nice 2 1/2 " hard square where they insert the needle to fill up the expanders, and the fact that the skin may harden and contract on the left side where the radiation will take place--so shrinkage must be taken into account, and the fact that they stick the syringe full of "cc's of fluid" in while you are laying down and have no ability to see what is happening--like I know what 100 cc's or 50cc's will do to the foreign objects that I call breasts!
WTMI not withstanding I have quite the decision to make--I want to be full enough to look good in my bathing suit, but not so big that my new chest is the subject of private conversations for years to come....I really just want to get back into the normal looking category although if there is ever any defense for going huge--breast cancer would be it! Not to disappoint all you (including my cute husband) who were voting for big whoppers that would fill in the cute pink 44D bra that Sheri sent way back in October...I really just want something that looks good to me and Ken and doesn't cause back aches.
The other outstanding question is when to do reconstruction--I know for sure that it won't happen until chemo and radiation are both finished (sometime in June) but I'm still not sure how long the skin needs to recover from radiation before I can get on the schedule....and then we have the summer issues to ponder. If I need 6 weeks to recover from surgery do I really want to do it in the summer when my kids are home ?? (Perk: they can lift, carry and vacuum...but they will also be around making lots of messes that will be hard to "rest" through!) But then again, if I can't water ski with the expanders in (" how many face plants in the water can I perform before I cause damage to the bike tubes?") maybe I need to take the weeks to rest in early summer so I can water ski by August!! Oh, the decisions of life are sooo difficult! And remember that I have FOMO to work into the equation--biking, hiking, gardening...can I really "rest" when all those activities are calling? Maybe I better wait until October--too cold to garden and too warm to ski!
So now the true test of your friendship comes--do you dare tell me if I'm looking a bit top heavy?? One of my true friends did mention that I have developed the odd habit of touching my bike tube expanders (aka breasts) when people start asking me questions about cancer or the mastectomy--I poke them as if they really aren't a part of me or as if I need to touch them to remember what they really are--funny thing is that I really can't feel much when I do poke--so I guess the nerve cells aren't properly telling my brain--"hey, quit poking yourself...you're making people uncomfortable!" Thank goodness someone had the nerve to mention that....so now I'm trying not to poke in public...but will anyone be brave enough to tell me what breast size I should shoot for???? Maybe personal confrontation might be too awkward....but you could send me an anonymous email or comment on the blog...."Survey Says???"
So one of the biggest dilemmas that I have now is trying to decide what to do with these appendages on the front of my person. Who knew that choosing a breast size would be waaaay harder than trying to find the perfect pair of blue jeans...you know, ones that fit just right on your hips and thighs at the same time, have the waistband in the proper spot to be comfortable, and look somewhat trendy at the same time. Yep, trying on cc's of saline is almost the same level of difficulty--especially when the Dr. comes in and asks " how many cc's do you want in today?" as if I walk around every day looking at women's chests trying to guess just how many cc's it would take to replicate that perfect size and shape taking into consideration that none of my own fatty tissue or breast tissue would be around to hold everything in place and fill in any gaps that the cc's couldn't.
So I'm trying to explain to Dr Agarwal that I want something like I had pre-mastectomy...I'm too lazy to go replace all my bras and clothes, so please can't I have something that fills in the darts on a tailored shirt, but doesn't make the buttons pop or gape?? Now I'm no plastic surgeon, but that sounds to me like a very reasonable request for a highly educated Dr. to perform--except that he has no personal experience with breasts...other than the silicon and saline types.
Now to make things just a little bit more complicated I have something akin to bicycle tubes (Dr. Agarwal's description when I asked him if they were like self healing mats used for sewing or stamping--yep, Ken likes that description!) filled with saline making my chest look as if it has never seen a scalpel. That description, of course, only applies to me with clothes on. Scars are healing incredibly well, but I would still attract some real attention on a nude beach in Brazil or Europe--and they wouldn't be looking at my incredibly white skin! My bike tubes have the interesting features of being highly durable, very stable, and inflatable to any size that my skin can accommodate--and my brain...I'm pretty sure my mental state can't handle anything as big as Dolly Parton (or remotely close!).
Remember that once upon a time I was a nice flat chested teen, a small/regular sort of college girl, a busty nursing mom, a depleted after nursing 4 babies mom, and an augmented post child bearing mom....it seems I've had a chance to try on every size from a training bra to a full C cup in my 38 years of being a female...so I should really know what I want, right?? But now throw into the pot that my current "expanders" are highly inflexible and contain a nice 2 1/2 " hard square where they insert the needle to fill up the expanders, and the fact that the skin may harden and contract on the left side where the radiation will take place--so shrinkage must be taken into account, and the fact that they stick the syringe full of "cc's of fluid" in while you are laying down and have no ability to see what is happening--like I know what 100 cc's or 50cc's will do to the foreign objects that I call breasts!
WTMI not withstanding I have quite the decision to make--I want to be full enough to look good in my bathing suit, but not so big that my new chest is the subject of private conversations for years to come....I really just want to get back into the normal looking category although if there is ever any defense for going huge--breast cancer would be it! Not to disappoint all you (including my cute husband) who were voting for big whoppers that would fill in the cute pink 44D bra that Sheri sent way back in October...I really just want something that looks good to me and Ken and doesn't cause back aches.
The other outstanding question is when to do reconstruction--I know for sure that it won't happen until chemo and radiation are both finished (sometime in June) but I'm still not sure how long the skin needs to recover from radiation before I can get on the schedule....and then we have the summer issues to ponder. If I need 6 weeks to recover from surgery do I really want to do it in the summer when my kids are home ?? (Perk: they can lift, carry and vacuum...but they will also be around making lots of messes that will be hard to "rest" through!) But then again, if I can't water ski with the expanders in (" how many face plants in the water can I perform before I cause damage to the bike tubes?") maybe I need to take the weeks to rest in early summer so I can water ski by August!! Oh, the decisions of life are sooo difficult! And remember that I have FOMO to work into the equation--biking, hiking, gardening...can I really "rest" when all those activities are calling? Maybe I better wait until October--too cold to garden and too warm to ski!
So now the true test of your friendship comes--do you dare tell me if I'm looking a bit top heavy?? One of my true friends did mention that I have developed the odd habit of touching my bike tube expanders (aka breasts) when people start asking me questions about cancer or the mastectomy--I poke them as if they really aren't a part of me or as if I need to touch them to remember what they really are--funny thing is that I really can't feel much when I do poke--so I guess the nerve cells aren't properly telling my brain--"hey, quit poking yourself...you're making people uncomfortable!" Thank goodness someone had the nerve to mention that....so now I'm trying not to poke in public...but will anyone be brave enough to tell me what breast size I should shoot for???? Maybe personal confrontation might be too awkward....but you could send me an anonymous email or comment on the blog...."Survey Says???"
Who has time to Blog???
I can't believe it....it is already time to do my day of joy and rapture (aka chemo #5). Friday, March 7th, I will be watching the chemicals drip and sucking on a Popsicle for the second to last time....and that is an awkward phrase that sounds incredibly wonderful.
I would have blogged--but I felt way to good to sit at a computer. Chemo 4 was reminiscent of chemo #1 when I was thinking that this whole chemo thing was just too doable to be true--a few days a nausea and rest...then back up and about! I have been crazy this last month playing with my kids, painting the house, and doing just about anything that felt like my old regular life, including staying up waaaaay to late at night and then trying to drag myself out of bed in the morning. My ultimate worst bedtime was 4 am....and I was close to that time at least 3 other times and loving every minute of my quiet, alone time in the craft room or talking to my girlfriends in the wee hours of the morning. I think that cancer isn't my true sickness....time management is!
I remember the early years of being a mom--I think I obsessed over when I could climb back in bed and sleep, or could I sneak a nap in while the kids napped, or could I sneak in a nap on the floor while Cathryn was trying to keep me awake long enough to play Barbies (my one true failure as a Mom was at trying to play Barbies, Cathryn says I feel asleep every time, Rachel seconds the statement and Andria doesn't even ask! Not to leave Ryan out, I wasn't a very good Lego inventor either...but I could nap pretty well while he built some amazing things!) I guess that the brutal truth is that I have never been good at sitting still, unless it means I am sleeping!
The crazy dining room painting that Cathryn and I started the day before Chemo #4 started to drive me crazy within 24 hours of chemo...but I patiently waited at least 48 before I begged Cathryn to don her paint clothes and help me finish the job. I must give her full credit for doing the exhausting work of using the roller brush, but I was happy to be on the ladder cutting in the corners and molding and pointing out any drips or bumps! Something about painting got me wound up and before you could blink I also had Ken roped into hanging the curtain rod and helping me put everything back into place. I've decided there's nothing like cancer to get your honey to work on your "honey-do" list! Friday, Ken was headed up to ski--and having FOMO (Fear of Missing Out) like I do, and looking out my window at the beautiful canyon I couldn't resist saying that I felt fabulous and that I was going to take advantage of the great new snow (that I have missed out on most of the season!). So I got my ski gear on and hopped in the car with only an occasional feeling of nausea--any exhaustion was definitely overshadowed by the exhilaration of leaving my house to head to Alta!
Drive up was pretty good...but by the time we parked I was definitely thinking that I was overstating how great I felt...but FOMO rules and I decided I was there, skis were there, and snow was there--I better go skiing. So I sat on the bumper and did some deep breathing while Ken put on his gear then headed for the lift lines. Now for the true test....getting the skis on. Legs are pretty jello like, but skiing is downhill, so my biggest challenge will be to stay up and ski in control. Ken chatted with our chairlift companions while I concentrated on not losing my breakfast...he was very sweet to excuse me from the conversation by mentioning that had just been through chemo and was feeling a bit nauseous...our new friends weren't quite sure how to react.
The great thing about skiing with Ken is that he has incredible confidence in my abilities....maybe more than he should. But I also have the great ability to bluff and act like everything is just hunky dory--so off he went down his black diamond run while I headed down my blue square--jello legs and all. I found that I could ski quite well as long as I stopped to catch my breath and let my legs stop quivering multiple times as I headed down. No fancy moves, no powder adventures through the trees...just sticking to the highly groomed trails and staying up was like a power workout--I'm wishing I had worn my heart rate monitor as I do know that just walking up the stairs the day after chemo can put my heart rate up into the mid 130's and make me want to climb in bed and take a nap!
I actually managed to ski 4 runs...before the nausea declared itself the winner and demanded some food and water to calm the storm...not saying that I looked like Picabo Street or anything like that, but it was worth the jello legs and stares, as I stopped to breath mid mountain, to enjoy the scenery, the rides up the lift with Ken, and the nap in the car while Ken got his money's worth out of his day pass. Life is too short not to live each day to the fullest!
Not that I didn't have moments of exhaustion this last month--I just talked myself out of most of them (including tonight when my dry eyeballs would really like a break). Once I finished the dining room the can of paint for the laundry room just kept calling my name, so Monday I spent the day trying to get the dust off the baseboards and the top of the cabinets so that I could paint my crazy yellow walls with big red polka dots--I showed my favorite yellow drinking glass with red dots to Ken and told him that it was my inspiration for the laundry room, but I don't think he really thought I would paint big red dots on the wall. But I did, with the help of all my kids, and Cathryn's friend Melissa (who stayed even after Cathryn left for soccer practice) who just couldn't resist squeezing into the smallest room in the house...all at once, all with paint brushes and rollers in hand, to help me get the room painted. Between the fumes of paint and all the stories the kids were telling each other--I left the room that night with a pretty good high!
Two days later, I was finally pulling all the blue tape off the moldings and putting everything back in the laundry room. I still have that horrible white tile on the floor that shows dirt the minute after you've finished cleaning it, but I also have this cheerful yellow room with bold red polka dots on it that makes me smile every time I walk in to put in a load, move a load into the dryer, or take a load out to fold. Doing laundry has suddenly become less of a drudgery and more of a joy...not only because of the fun paint, but also because I feel good enough to do it myself. Who would have guessed joy in the laundry room would be a blessing of having cancer???
So there are other things I still need to blog about--like the reality of getting used to the foreign objects attached to the front of my body...but I am going to make a disclaimer that the next blog will be WTMI to the max--so for those of my brothers or relatives that really don't want to know the odd/funny/weird/true reality of my breasts....I'd suggest skipping the next blog or two....I'll rate the next readable one with a G rating so that you know I'm done talking about the "B" word.
I would have blogged--but I felt way to good to sit at a computer. Chemo 4 was reminiscent of chemo #1 when I was thinking that this whole chemo thing was just too doable to be true--a few days a nausea and rest...then back up and about! I have been crazy this last month playing with my kids, painting the house, and doing just about anything that felt like my old regular life, including staying up waaaaay to late at night and then trying to drag myself out of bed in the morning. My ultimate worst bedtime was 4 am....and I was close to that time at least 3 other times and loving every minute of my quiet, alone time in the craft room or talking to my girlfriends in the wee hours of the morning. I think that cancer isn't my true sickness....time management is!
I remember the early years of being a mom--I think I obsessed over when I could climb back in bed and sleep, or could I sneak a nap in while the kids napped, or could I sneak in a nap on the floor while Cathryn was trying to keep me awake long enough to play Barbies (my one true failure as a Mom was at trying to play Barbies, Cathryn says I feel asleep every time, Rachel seconds the statement and Andria doesn't even ask! Not to leave Ryan out, I wasn't a very good Lego inventor either...but I could nap pretty well while he built some amazing things!) I guess that the brutal truth is that I have never been good at sitting still, unless it means I am sleeping!
The crazy dining room painting that Cathryn and I started the day before Chemo #4 started to drive me crazy within 24 hours of chemo...but I patiently waited at least 48 before I begged Cathryn to don her paint clothes and help me finish the job. I must give her full credit for doing the exhausting work of using the roller brush, but I was happy to be on the ladder cutting in the corners and molding and pointing out any drips or bumps! Something about painting got me wound up and before you could blink I also had Ken roped into hanging the curtain rod and helping me put everything back into place. I've decided there's nothing like cancer to get your honey to work on your "honey-do" list! Friday, Ken was headed up to ski--and having FOMO (Fear of Missing Out) like I do, and looking out my window at the beautiful canyon I couldn't resist saying that I felt fabulous and that I was going to take advantage of the great new snow (that I have missed out on most of the season!). So I got my ski gear on and hopped in the car with only an occasional feeling of nausea--any exhaustion was definitely overshadowed by the exhilaration of leaving my house to head to Alta!
Drive up was pretty good...but by the time we parked I was definitely thinking that I was overstating how great I felt...but FOMO rules and I decided I was there, skis were there, and snow was there--I better go skiing. So I sat on the bumper and did some deep breathing while Ken put on his gear then headed for the lift lines. Now for the true test....getting the skis on. Legs are pretty jello like, but skiing is downhill, so my biggest challenge will be to stay up and ski in control. Ken chatted with our chairlift companions while I concentrated on not losing my breakfast...he was very sweet to excuse me from the conversation by mentioning that had just been through chemo and was feeling a bit nauseous...our new friends weren't quite sure how to react.
The great thing about skiing with Ken is that he has incredible confidence in my abilities....maybe more than he should. But I also have the great ability to bluff and act like everything is just hunky dory--so off he went down his black diamond run while I headed down my blue square--jello legs and all. I found that I could ski quite well as long as I stopped to catch my breath and let my legs stop quivering multiple times as I headed down. No fancy moves, no powder adventures through the trees...just sticking to the highly groomed trails and staying up was like a power workout--I'm wishing I had worn my heart rate monitor as I do know that just walking up the stairs the day after chemo can put my heart rate up into the mid 130's and make me want to climb in bed and take a nap!
I actually managed to ski 4 runs...before the nausea declared itself the winner and demanded some food and water to calm the storm...not saying that I looked like Picabo Street or anything like that, but it was worth the jello legs and stares, as I stopped to breath mid mountain, to enjoy the scenery, the rides up the lift with Ken, and the nap in the car while Ken got his money's worth out of his day pass. Life is too short not to live each day to the fullest!
Not that I didn't have moments of exhaustion this last month--I just talked myself out of most of them (including tonight when my dry eyeballs would really like a break). Once I finished the dining room the can of paint for the laundry room just kept calling my name, so Monday I spent the day trying to get the dust off the baseboards and the top of the cabinets so that I could paint my crazy yellow walls with big red polka dots--I showed my favorite yellow drinking glass with red dots to Ken and told him that it was my inspiration for the laundry room, but I don't think he really thought I would paint big red dots on the wall. But I did, with the help of all my kids, and Cathryn's friend Melissa (who stayed even after Cathryn left for soccer practice) who just couldn't resist squeezing into the smallest room in the house...all at once, all with paint brushes and rollers in hand, to help me get the room painted. Between the fumes of paint and all the stories the kids were telling each other--I left the room that night with a pretty good high!
Two days later, I was finally pulling all the blue tape off the moldings and putting everything back in the laundry room. I still have that horrible white tile on the floor that shows dirt the minute after you've finished cleaning it, but I also have this cheerful yellow room with bold red polka dots on it that makes me smile every time I walk in to put in a load, move a load into the dryer, or take a load out to fold. Doing laundry has suddenly become less of a drudgery and more of a joy...not only because of the fun paint, but also because I feel good enough to do it myself. Who would have guessed joy in the laundry room would be a blessing of having cancer???
So there are other things I still need to blog about--like the reality of getting used to the foreign objects attached to the front of my body...but I am going to make a disclaimer that the next blog will be WTMI to the max--so for those of my brothers or relatives that really don't want to know the odd/funny/weird/true reality of my breasts....I'd suggest skipping the next blog or two....I'll rate the next readable one with a G rating so that you know I'm done talking about the "B" word.
Wednesday, February 13, 2008
White blood cell count up...and the countdown is on!
Happy Valentines to all my friends and family who are checking up on me....I love you all and can't imagine how I could have survived so far without all your love and support and service.
So #4 is working its chemical magic as I write. I was able to get the girls off to school...just a bit late as it seems to take herculean effort to drag myself out of bed the day after chemo and Rachel and Andria take full advantage of the fact that I'm not moving very fast! It probably doesn't help that the steroids are telling me to stay awake and my internal clock is telling me to sleep. So I go to sleep and then wake up 4 or 5 times during the night with crazy dreams or wondering what time it is. Somehow last night I set my alarm and then woke up and realized that I had also changed the time on the clock (not sure if I did that in a dream state or what, but at 4:35 am my clock said 9:15 which I was pretty sure was impossible am or pm!) ...I'm hoping it really is the chemo and not signs of psychotic deterioration!
The four week break seemed to work magic for my white blood cell count and it is back into the normal range which made us all smile....so now they are thinking that they will let me do chemo at 3 1/2 weeks instead of 4...but when I came home and looked at the calendar that means I do chemo on a day the kids are home from school...maybe I'll just shoot for 4 weeks and call it good. So many things to schedule...so little time! But only 2 more chemo sessions to go, YIPEE!
My big activities for the day were taking anti-nausea pills, folding two loads of laundry, taking a nap and fixing tacos for dinner--whew! I think I better go catch a few more winks of sleep and hopefully tonight I won't be messing with the clock in my dreams. I have issues with time...can't I at least escape them while I'm sleeping?
So #4 is working its chemical magic as I write. I was able to get the girls off to school...just a bit late as it seems to take herculean effort to drag myself out of bed the day after chemo and Rachel and Andria take full advantage of the fact that I'm not moving very fast! It probably doesn't help that the steroids are telling me to stay awake and my internal clock is telling me to sleep. So I go to sleep and then wake up 4 or 5 times during the night with crazy dreams or wondering what time it is. Somehow last night I set my alarm and then woke up and realized that I had also changed the time on the clock (not sure if I did that in a dream state or what, but at 4:35 am my clock said 9:15 which I was pretty sure was impossible am or pm!) ...I'm hoping it really is the chemo and not signs of psychotic deterioration!
The four week break seemed to work magic for my white blood cell count and it is back into the normal range which made us all smile....so now they are thinking that they will let me do chemo at 3 1/2 weeks instead of 4...but when I came home and looked at the calendar that means I do chemo on a day the kids are home from school...maybe I'll just shoot for 4 weeks and call it good. So many things to schedule...so little time! But only 2 more chemo sessions to go, YIPEE!
My big activities for the day were taking anti-nausea pills, folding two loads of laundry, taking a nap and fixing tacos for dinner--whew! I think I better go catch a few more winks of sleep and hopefully tonight I won't be messing with the clock in my dreams. I have issues with time...can't I at least escape them while I'm sleeping?
Sunday, January 27, 2008
Chemo Brain excuses and more
So now that I'm half way through, I think this whole cancer routine is starting to be just that --a routine. I'm now past the chemo slows and woke up yesterday thinking--hey, I feel pretty normal and I went about my day doing the normal things like laundry, getting the kids to do their chores, cleaning the house and running the kids to their various activities. There are a few things that aren't so normal....I found the box of Christmas cards that I was so ambitious to make in early December only to have most of them sit in the box for the remainder of December. I did try to send out a good batch of them between chemo 1 and Chemo 2...I sent two cards to one address (two different household names) and got one back that I swear has the correct address on it--I am blaming both on the infamous chemo brain that my husband doesn't believe exists...and I am sending the Christmas cards in spite of the fact that they are now a full month late--The kids say I am taking the excuse that I have Cancer just a little bit too far. That may be true, but I think I'm going to take advantage of it while I can. Next year when they're late I'll have to find a better excuse...like the Dog Ate My Christmas Cards.
The phenomenon of Chemo-brain has emerged in chemo's past--Take Chemo # 2 for example: Went skiing on Christmas day and took my cash card and driver's license to buy food and rent skis...remember coming home and putting them in a zipper pocket...got up early and went to chemo...came home with a different brain that couldn't remember for the life of me what zipper pocket I put the two vital cards in. No biggie...I wasn't going to be driving for at least 5 days while I recuped from chemo so I spent my energy on resting and was sure the cards would show up during the next 5 days. 1 week post chemo and I am thinking it might be time to locate the cards...search all snow pant pockets and ski jackets, wallet and purse...no cards, no stress, still not out running about except for dire "kids need a quick ride not very far" excursions. I drive cautiously as I know I have no license. Week two--I finally fess up to Ken that I am really missing the license and cash card...he rolls his eyeballs but thoughtfully checks the bank records for any unusual activity. Bank card has not been used and I sigh in relief knowing that the cards are safely zipped in somewhere.....another week passes and luckily I do not go shopping much and the two times I use my credit card and they ask for ID I somehow get away with using my Costco Card for a positive ID (Another reason to love Costco!!). 3 weeks have passed and I am almost ready to submit to the fact that I will have to go to the driver's license division and replace my license....but the very thought makes me check the house one more time--all past and present purses are searched for elusive cards, all jackets, kids' included are checked for cards, car is searched...other car is searched...piles of paper are sorted, couch cushions vacuumed...still no Cards. Chemo # 3 arrives and I have been missing my cards for a full 3 weeks. I climb into the car for chemo and open my black chemo bag where I keep all my cancer info and basics like lotion, chap stick, and a water bottle to survive my day at the chemo lounge....and what do I find in my handy little zipper pocket in the black bag???....My lost cash card and driver's license. Not sure why I put them in the chemo bag as I always take my purse with all the vital cards and money, but there they were "zipped" just as I remembered. Too bad the memory was only partial!!
And then Chemo # 3--chemo brain strikes again. This time I get up to find something to eat to fight off the nausea and pull out my retainers that I wear at night (remember, I just got my braces off!) I put them carefully on a surface thinking that I will need to remember where they are so that I can take them back upstairs and put them safely in their case. But Chemo Brain sets in and I head back upstairs to sleep away my yucky chemo days...with only a vague memory of taking them out and setting them someplace safe. 6 days later I finally return to some vestige of my former person and I am moving about the house wondering where I could have put those retainers....clean off the desks, windowsills, cabinets, counter tops...all flat surfaces such as tops of bookcases and fireplace mantels are checked....still no retainer. This time I know I can't look for three weeks--it took my teeth 2 1/2 years to move into the correct position, but surely they will move back out in less than a week!! The dentist doesn't work on Monday....so first thing on Tuesday (1 week post chemo) I call and arrange to replace my retainers $75 for the top, $75 for the bottom (wouldn't you think they come as a set???) and I willingly shell out the cash (would I have been so nice for a child who lost retainers???) and sit in the chair and breathe deep through my mouth and then my nose while that gummy, gooey Pina colada flavored mold goop drips down the back of my throat. And I go home and will my teeth to stay in position one more day while they make up the retainers. Sure enough, when I pick up my retainer on Wednesday at 2:30....Dr. Madsen points out that even though I can't tell--he can tell that my front teeth have shifted and out comes the polisher and sand paper and the artist puts my teeth into the exact proper place with a super tight retainer that will move everything back into position. Darn that Chemo Brain...it's causing the side effect of sore teeth.
So now I'm paying the price of losing my retainer by having to wear it everyday and night for the next three weeks. I can only hope that my brain is functioning well enough now that I can hold onto this set for at least the next three weeks...and then maybe on Feb 12 when I head for chemo #4 may the first pair appear on some safe counter top!! At the rate I'm going, I could really use having a spare set around the house that I can use when I lose the new set! I blame it all on Chemo--I need some excuse until old age sets in!
The phenomenon of Chemo-brain has emerged in chemo's past--Take Chemo # 2 for example: Went skiing on Christmas day and took my cash card and driver's license to buy food and rent skis...remember coming home and putting them in a zipper pocket...got up early and went to chemo...came home with a different brain that couldn't remember for the life of me what zipper pocket I put the two vital cards in. No biggie...I wasn't going to be driving for at least 5 days while I recuped from chemo so I spent my energy on resting and was sure the cards would show up during the next 5 days. 1 week post chemo and I am thinking it might be time to locate the cards...search all snow pant pockets and ski jackets, wallet and purse...no cards, no stress, still not out running about except for dire "kids need a quick ride not very far" excursions. I drive cautiously as I know I have no license. Week two--I finally fess up to Ken that I am really missing the license and cash card...he rolls his eyeballs but thoughtfully checks the bank records for any unusual activity. Bank card has not been used and I sigh in relief knowing that the cards are safely zipped in somewhere.....another week passes and luckily I do not go shopping much and the two times I use my credit card and they ask for ID I somehow get away with using my Costco Card for a positive ID (Another reason to love Costco!!). 3 weeks have passed and I am almost ready to submit to the fact that I will have to go to the driver's license division and replace my license....but the very thought makes me check the house one more time--all past and present purses are searched for elusive cards, all jackets, kids' included are checked for cards, car is searched...other car is searched...piles of paper are sorted, couch cushions vacuumed...still no Cards. Chemo # 3 arrives and I have been missing my cards for a full 3 weeks. I climb into the car for chemo and open my black chemo bag where I keep all my cancer info and basics like lotion, chap stick, and a water bottle to survive my day at the chemo lounge....and what do I find in my handy little zipper pocket in the black bag???....My lost cash card and driver's license. Not sure why I put them in the chemo bag as I always take my purse with all the vital cards and money, but there they were "zipped" just as I remembered. Too bad the memory was only partial!!
And then Chemo # 3--chemo brain strikes again. This time I get up to find something to eat to fight off the nausea and pull out my retainers that I wear at night (remember, I just got my braces off!) I put them carefully on a surface thinking that I will need to remember where they are so that I can take them back upstairs and put them safely in their case. But Chemo Brain sets in and I head back upstairs to sleep away my yucky chemo days...with only a vague memory of taking them out and setting them someplace safe. 6 days later I finally return to some vestige of my former person and I am moving about the house wondering where I could have put those retainers....clean off the desks, windowsills, cabinets, counter tops...all flat surfaces such as tops of bookcases and fireplace mantels are checked....still no retainer. This time I know I can't look for three weeks--it took my teeth 2 1/2 years to move into the correct position, but surely they will move back out in less than a week!! The dentist doesn't work on Monday....so first thing on Tuesday (1 week post chemo) I call and arrange to replace my retainers $75 for the top, $75 for the bottom (wouldn't you think they come as a set???) and I willingly shell out the cash (would I have been so nice for a child who lost retainers???) and sit in the chair and breathe deep through my mouth and then my nose while that gummy, gooey Pina colada flavored mold goop drips down the back of my throat. And I go home and will my teeth to stay in position one more day while they make up the retainers. Sure enough, when I pick up my retainer on Wednesday at 2:30....Dr. Madsen points out that even though I can't tell--he can tell that my front teeth have shifted and out comes the polisher and sand paper and the artist puts my teeth into the exact proper place with a super tight retainer that will move everything back into position. Darn that Chemo Brain...it's causing the side effect of sore teeth.
So now I'm paying the price of losing my retainer by having to wear it everyday and night for the next three weeks. I can only hope that my brain is functioning well enough now that I can hold onto this set for at least the next three weeks...and then maybe on Feb 12 when I head for chemo #4 may the first pair appear on some safe counter top!! At the rate I'm going, I could really use having a spare set around the house that I can use when I lose the new set! I blame it all on Chemo--I need some excuse until old age sets in!
Thursday, January 24, 2008
Half way through the Joy and Rapture!
Yep it's true...I'm technically half way finished with Chemo--thank goodness because my white blood cell count just isn't up to snuff these days...so I'm just hoping to keep somewhat to the original schedule and get finished up! Last round was almost cancelled due to my low count--but I batted my eyelashes and flashed my braceless smile and they let me go ahead with the scheduled infusion and my schedule Swedish Weave lesson ala my personal instructor, Jonelle Champion, aka date for the day.
This time they even let me sit on the opposite side of the room in a green recliner with a view of the snow flying outside--yipee! And thanks to Pat for my new description of what I get to say during my visit to the infusion room--"oh joy, oh rapture--I get to have my infusion of Cytoxan, methotrexate, and fluorouracil!!" So the good news is that they let me go ahead with infusion # 3--and the other good/bad news is that I have to/get to wait 4 weeks until infusion #4. That gives me two weeks to feel good instead of one...but bumps my finishing date by 3 weeks if I have to stick to the 4 week schedule. I think I better let them know that I'm on a time schedule--I have a family reunion to attend at the end of June and I realllllly need to stay on schedule to make that deadline!! Do they realize how many nieces and nephews are counting on their favorite crazy aunt to show up at "the lodge" for creek swimming and woodsy path exploring?? Okay, so maybe I'm exaggerating the favorite aunt thing because MaurLo is really the favorite...but I'm trying to get a little sympathy and support with this scheduling thing.
I already highlighted my calendar, had Ken arrange his work schedule and everything...and now my calendar looks all messy and confusing (like usual!). I guess I should be grateful because the chemo fatigue has hit me with a really big stick this time. I was really enjoying getting off easy--4 days down and then by Saturday I felt good enough to get out of the house a bit...but this time I managed to stay down and out until Monday and then any escapes out of the house have been mostly to take kids to doctor and dentist appointments which means that I'm ready to crawl into bed for good by 5 pm--not such a hot plan when the kids want something to eat for dinner other than top ramen.
--so I must be better--because it is 11 and I'm still awake--truthfully that is only because another angel came to my house and got the kids ready for school while I stayed in bed and slept through the whole process and another angel showed up with a warm dinner to feed the hungry kids....the reality is that I only look like I'm keeping everything together because I repeatedly have people who are letting me rest while they take care of some of the basics of life! My kids are thinking that there are some great moms out there other than me and they are basking in all the yummy cooked goods and extra love and attention--and to be honest--so am I!
So--thanks to all of you for your help, phone calls, emails, cards, and love and prayers! Now I just need a magic recipe for boosting my white blood cells--although my Nurse Practicioner, Janet, assures me that there really isn't a magic potion other than time! In the last 2 weeks I've managed to avoid Ryan's flu, cold and ear infections, Rachel's bout with shingles, Andria's cough and cold and Ken's addiction to biking...okay I've avoided most of that--but managed to pick up some mild congestion, a cough and I have found myself craving the ability to pedal on a stationary bike now that it is sooo cold outside.
I say craving the ability because I have found myself sitting on the bike, pedaling...it just doesn't seem to be quality exercise these days because just a gentle push on the pedals makes my heart rate sore and my muscles are looking a bit soft these days--I'm wondering if my trek to Logan to ride in the Red Riding Hood Ride for Breast Cancer this June will be a ride or a chance to use a tag-along bike while Cathryn pulls me! Those days of enjoying a good sweat on the bike or eliptical seem like ancient history--now things like using a blowdryer long enough to dry my hair in one session or carrying the laundry up the stairs seem more like olympic events than everyday tasks. So I guess for now I'll have to learn to excell in the sport of relaxation, resting, and recuperating--this could prove to be the hardest part of surviving Cancer treatment yet! I'm off to bed--I mean, off to train for the triple R Olympics!!
This time they even let me sit on the opposite side of the room in a green recliner with a view of the snow flying outside--yipee! And thanks to Pat for my new description of what I get to say during my visit to the infusion room--"oh joy, oh rapture--I get to have my infusion of Cytoxan, methotrexate, and fluorouracil!!" So the good news is that they let me go ahead with infusion # 3--and the other good/bad news is that I have to/get to wait 4 weeks until infusion #4. That gives me two weeks to feel good instead of one...but bumps my finishing date by 3 weeks if I have to stick to the 4 week schedule. I think I better let them know that I'm on a time schedule--I have a family reunion to attend at the end of June and I realllllly need to stay on schedule to make that deadline!! Do they realize how many nieces and nephews are counting on their favorite crazy aunt to show up at "the lodge" for creek swimming and woodsy path exploring?? Okay, so maybe I'm exaggerating the favorite aunt thing because MaurLo is really the favorite...but I'm trying to get a little sympathy and support with this scheduling thing.
I already highlighted my calendar, had Ken arrange his work schedule and everything...and now my calendar looks all messy and confusing (like usual!). I guess I should be grateful because the chemo fatigue has hit me with a really big stick this time. I was really enjoying getting off easy--4 days down and then by Saturday I felt good enough to get out of the house a bit...but this time I managed to stay down and out until Monday and then any escapes out of the house have been mostly to take kids to doctor and dentist appointments which means that I'm ready to crawl into bed for good by 5 pm--not such a hot plan when the kids want something to eat for dinner other than top ramen.
--so I must be better--because it is 11 and I'm still awake--truthfully that is only because another angel came to my house and got the kids ready for school while I stayed in bed and slept through the whole process and another angel showed up with a warm dinner to feed the hungry kids....the reality is that I only look like I'm keeping everything together because I repeatedly have people who are letting me rest while they take care of some of the basics of life! My kids are thinking that there are some great moms out there other than me and they are basking in all the yummy cooked goods and extra love and attention--and to be honest--so am I!
So--thanks to all of you for your help, phone calls, emails, cards, and love and prayers! Now I just need a magic recipe for boosting my white blood cells--although my Nurse Practicioner, Janet, assures me that there really isn't a magic potion other than time! In the last 2 weeks I've managed to avoid Ryan's flu, cold and ear infections, Rachel's bout with shingles, Andria's cough and cold and Ken's addiction to biking...okay I've avoided most of that--but managed to pick up some mild congestion, a cough and I have found myself craving the ability to pedal on a stationary bike now that it is sooo cold outside.
I say craving the ability because I have found myself sitting on the bike, pedaling...it just doesn't seem to be quality exercise these days because just a gentle push on the pedals makes my heart rate sore and my muscles are looking a bit soft these days--I'm wondering if my trek to Logan to ride in the Red Riding Hood Ride for Breast Cancer this June will be a ride or a chance to use a tag-along bike while Cathryn pulls me! Those days of enjoying a good sweat on the bike or eliptical seem like ancient history--now things like using a blowdryer long enough to dry my hair in one session or carrying the laundry up the stairs seem more like olympic events than everyday tasks. So I guess for now I'll have to learn to excell in the sport of relaxation, resting, and recuperating--this could prove to be the hardest part of surviving Cancer treatment yet! I'm off to bed--I mean, off to train for the triple R Olympics!!
Saturday, January 12, 2008
Time flies when you're fighting Cancer...warning: this will take more than a minute to read!
I'm not sure why, but somehow my urge to write doesn't emerge until the late hours of the night...or maybe I should grasp reality and say the wee hours of the morning. During the last month I've had a million things to blog about, vent about or think about and somehow it just hasn't been the right moment or I just haven't felt brave enough to face the computer screen and the reality that all my friends and family are checking my blog to see how I'm coping with the everyday reality of how cancer has changed my life.
Maybe it would be faster to mention the ways it hasn't changed my life--dishes are still piling up in the sink, laundry is still piling up in hampers, corners, couches, empty counters, the top of the air hockey table and baskets throughout the house. The kids lunches are still left on the counter after multiple reminders to put it in the backpack and the piano still doesn't get practiced every day by every child. I still lose my temper, need sleep and don't have enought time to do everything I want and the house is still falling apart faster than I can even put the items on the homeimprovement to-do list (yep, I'm opening and closing the garage door the old fashioned way until the garage door people can come install a new motor...sometime next week).
All this is happening while I have the nagging thought in my head that I am supposed to be resting and letting my body fight this battle against these crazy cancer cells that might be lurking somewhere in my body just waiting for the chance to resume their crazy, and unpredictable growth. More obvious than the nagging thought in my head are the words my infusion nurse, Jennifer, said out loud the last time I was sitting in that green vinyl recliner sucking on a popsicle to prevent mouth sores "Your white blood count is a bit low. I know it was the holiday season, but you need to rest more, and eat more protein" Never really thought it was possible to feel guilt for NOT laying around the house and doing nothing, but here I am feeling guilty for the fact that I really stink at resting.
Another blog that I should have written, but didn't have enough emotional stamina to even think about it for two days after the experience was "How to pay $100 for a really good cry".
You see, ever since my mom died in a car accident 5 years ago, people have been telling me that I really should see a therapist. But because I thought I could handle everything life throws me with a big support network and an even bigger mouth that tells everyone just what I'm thinking at any given moment, I managed to avoid making an appointment to commune with the couch in a therapist office.
Even after several other major losses and challenges in life, I continued to bore my friends with my constant venting and detailed replies to their innocent question "How are you?" I'm pretty sure that the phrase "too much information" (TMI) has applied to me more often than I care to think about. In fact, the new phrase at our house is WTMI....Waaaaay Too Much Information, and it is probably a more apt description of how I have communicated my frustrations, my joys, and my sorrows over the last 5 years.
A year and a half ago I got to the point where my friends were beginning to think that a true black cloud was hanging over me...that might have been the point in time where we started to analyze the possibility of broken mirrors actually bringing on 7 years of bad luck (that's a whole other blog) or considering that retrograde mercury might be a scientific fact instead of an astrological possibility (another blog). All the household appliances were breaking down multiple times in a row and the car refused to be properly repaired after multiple trips to multiple repair shops and multiple requests for refunds on shoddy work (another blog). And inspite of the fact that I had the knowledge, resource and capability to fix all the broken things, I would have to cry (for the rest of the day) after the mechanic called to reveal another repair that had caused more damage that needed repaired. Not only was I crying, but I was enjoying the normal joys of life like reading stories to my kids or working in the yard from a distant fog, a little molehills of the day easily became mountains and I was putting myself in timeout more often than I was putting the kids there.
In reality, my life stresses at the time were probably pretty normal, but my OB/GYN informed me that my emotional reponses were not (normal that is) and that I might want to consider trying an anti-deppresant and talking to a therapist. That began my education that depression is not just wanting to stay in bed all day long...and that all my attempts to exercise, eat right and talk myself out of my funk, and keep doing the normal routine were just not working. So I tried some medication (luckily it worked fast and well)...but somehow I never got to the therapist (yep, I have a good list of excuses to justify that!) So just as I was working with my internist to see if my Effexor was a permanent part of life or just a temporarily needed boost to my system....the lump sent me to the mammogram which sent me to the ultrasound which sent me to the biopsy which sent me into this spiral of lving with cancer. So now that you've read through all that WTMI I can get to the 'paying lots of money for a good cry' part.
I don't want anyone to think that I haven't been recieving lots of good free cries over the last five years, the closet is free, the shower is free, my husband's shoulder is free, and phone calls to my friends to cry are free as long as I remember to call on the cell phone and not go over my monthly minutes! I know how to have a good cry...but the $100 dollar cry was one that I'm still considering the value of.
Serendipitously a friend of mine mentioned that she knew someone good to talk to, not that other friends haven't suggested names or suggested therapy, but somehow this time I was ready to listen, and the therapist met the requirements of taking my insurance, office with an easy commute, and the most important, returning my phone request for a call back to set up an appointment. So with a date on the calendar I geared myself up for a visit to a THERAPIST.
Funny thing happens when you make an appointment...it's like trying to get a mechanic to hear that funny clunking noise that you've heard in your car for months....life seems to be going fine- kids are good, house is relatively clean, husband is being extra thoughtful, emotions feel under control/normal and you seem to be coping fine and you are wondering what you really need to talk to a therapist for. But I'm one who is highly committed to things written down on the calendar (if I remember to look at it) and I arranged my schedule and showed up for my appointment.
Mistake number one: I didn't wear waterproof mascara!
I haven't cried for quite a while ( at least 2 weeks) so I quit wearing my waterproof mascara that I have been wearing since I found out I had cancer and started crying at random times when I would be talking to friends about how life was...I'm really just too lazy to use makeup remover to clean my eyelashes and I was happy to just be using normal mascara that washes off with soap and water. Besides there is a comfort in wearing normal mascara...it means you are "normal" and can go through the day without spontaneously bursting into tears about some random comment someone makes.
Mistake number two: My hormones are out of wack!
Because of Chemo my poor body is not sure what to think its hormonal age is--I still have all my blonde (well...dirty blonde and graying) hair but since baldness isn't a sure side affect of CMF I have to deal with the side effect of going into menopause at age 38...but it's not a for sure side affect, just a possibility and so my body can't decide whether to be young...or menopausal...so now I have no schedule to predict when my PMS days are...maybe now everyday is a PPMS day (a Perhaps Pre- Menopausal Syndrome). WTMI but the reality is that my emotional days were pretty predictable and now they aren't....so I was already a bit emotional when I went, just not on schedule enough to make me think "this is a waterproof mascara day"!
Mistake number three: I went to a therapist with a real couch and a real big box of kleenex within easy reach.
To make matters worse there was a beautiful water color painting on the wall that looked just like Josie and Julie riding the horses through the trees at the ranch (I need my waterproof mascara just writing about it). And the reality of all my losses immediately felt fresh and raw. It didn't really help that my therapist is a nice sympathetic, gentle speaking woman who makes you feel like you really should be crying about your life...and she is really good at just listening for a full hour while you try to talk about all the things on your list that she might possibly be able to give you advice about. So somehow I talked/cried a full hour until the secretary buzzed in to say "Your 11 o'clock appointment is here".
By the time I composed myself enough to walk down the hall, hope that the 11 o'clock appointment wasn't coming up the stairs (that might have scared them off!), and find my car I had somehow spent $100. Then I had to sit in my car for 15 minutes and think (as much as you can think with an I Just Cried for an Hour Headache) about what I had to show for my expenditure that wasn't nearly as fun as a drop-in visit to TJ MAXX. What I got out of the visit: go to the library or bookstore and get a DVD or book on Guided Imagry Relaxation, breath deeply and relax 20 minutes in the morning and 20 minutes in the evening. Write in my journal everyday (or blog...oops, now you know how well I followed that advice!). Keep talking to husband, friends and family....I'm doing that right. Look for support groups for my kids that don't have very supportive friends and read the PEOPLE CODE (more typically known as the color code) by Taylor Hartman.
So here I sit--giving myself some free therapy by writing WTMI for the world to read. And just in case you are wondering, I think about breathing deeply at least 5 times during the day...and I breathe deeply for as long as I can before I am distracted by the next thing that needs done. My personal librarian (who picks up, drops off and renews my books without a single reminder from me--The library is loosing out big time on predictable Johnson overdue fines!) has the requested books on hold or on search....and I am still thinking about support groups for the kids...they aren't too hip on the idea. I have written in my journal a few times and I am able to wear normal mascara, unless I blog. It took two days to recover from therapy....good thing I have at least 3 weeks to think about whether or not I really want to go again.
I went to bowling the next day and talked to anyone/everyone there who would listen (therapy for free) and came home with: no bloodshot, red, swollen eyes; no headache; lots of hugs and encouragement to keep on living and enjoying life; appreciation for the fact that other people have difficulties too and I don't necessarily want to switch my problems for theirs; a good laugh at the fact that I still always say "at least we are all healthy and happy" and I'm really talking about myself and my family as if we have no health issues to deal with; grattitude for female friend who don't try to offer solutions to my problems but just simpathize and tell me that I'm doing a great job of coping (they always say that it's the thought that counts and so I prefer to think of myself as coping just fine and then it will be true).
I'm really starting to think that the true therapists are the people around me who are willing to listen to me even when I give WTMI and don't send me a bill at the end of the conversation. In reality I have therapists in the form of the Baxter and Johnson families, my neighbors, at the school when I volunteer, at church, when I pick up kids from playdates, on the soccer and basketball sidelines, in my email inbox, on the answering machine, in the mail in the form of a card, at bowling on Wednesdays between chemo when I can actually lift the ball, all my Alliance friends, the JETS, my friends from DC, El Paso, New Orleans, Utah, Ricks College, USU, UTEP--you have all been telling me that I need to breath more deeply and blog more often--and it hasn't cost me a dime! I think I'll keep all you free therapists and throw in a shopping trip to TJ MAXX--no waterproof mascara required!
Maybe it would be faster to mention the ways it hasn't changed my life--dishes are still piling up in the sink, laundry is still piling up in hampers, corners, couches, empty counters, the top of the air hockey table and baskets throughout the house. The kids lunches are still left on the counter after multiple reminders to put it in the backpack and the piano still doesn't get practiced every day by every child. I still lose my temper, need sleep and don't have enought time to do everything I want and the house is still falling apart faster than I can even put the items on the homeimprovement to-do list (yep, I'm opening and closing the garage door the old fashioned way until the garage door people can come install a new motor...sometime next week).
All this is happening while I have the nagging thought in my head that I am supposed to be resting and letting my body fight this battle against these crazy cancer cells that might be lurking somewhere in my body just waiting for the chance to resume their crazy, and unpredictable growth. More obvious than the nagging thought in my head are the words my infusion nurse, Jennifer, said out loud the last time I was sitting in that green vinyl recliner sucking on a popsicle to prevent mouth sores "Your white blood count is a bit low. I know it was the holiday season, but you need to rest more, and eat more protein" Never really thought it was possible to feel guilt for NOT laying around the house and doing nothing, but here I am feeling guilty for the fact that I really stink at resting.
Another blog that I should have written, but didn't have enough emotional stamina to even think about it for two days after the experience was "How to pay $100 for a really good cry".
You see, ever since my mom died in a car accident 5 years ago, people have been telling me that I really should see a therapist. But because I thought I could handle everything life throws me with a big support network and an even bigger mouth that tells everyone just what I'm thinking at any given moment, I managed to avoid making an appointment to commune with the couch in a therapist office.
Even after several other major losses and challenges in life, I continued to bore my friends with my constant venting and detailed replies to their innocent question "How are you?" I'm pretty sure that the phrase "too much information" (TMI) has applied to me more often than I care to think about. In fact, the new phrase at our house is WTMI....Waaaaay Too Much Information, and it is probably a more apt description of how I have communicated my frustrations, my joys, and my sorrows over the last 5 years.
A year and a half ago I got to the point where my friends were beginning to think that a true black cloud was hanging over me...that might have been the point in time where we started to analyze the possibility of broken mirrors actually bringing on 7 years of bad luck (that's a whole other blog) or considering that retrograde mercury might be a scientific fact instead of an astrological possibility (another blog). All the household appliances were breaking down multiple times in a row and the car refused to be properly repaired after multiple trips to multiple repair shops and multiple requests for refunds on shoddy work (another blog). And inspite of the fact that I had the knowledge, resource and capability to fix all the broken things, I would have to cry (for the rest of the day) after the mechanic called to reveal another repair that had caused more damage that needed repaired. Not only was I crying, but I was enjoying the normal joys of life like reading stories to my kids or working in the yard from a distant fog, a little molehills of the day easily became mountains and I was putting myself in timeout more often than I was putting the kids there.
In reality, my life stresses at the time were probably pretty normal, but my OB/GYN informed me that my emotional reponses were not (normal that is) and that I might want to consider trying an anti-deppresant and talking to a therapist. That began my education that depression is not just wanting to stay in bed all day long...and that all my attempts to exercise, eat right and talk myself out of my funk, and keep doing the normal routine were just not working. So I tried some medication (luckily it worked fast and well)...but somehow I never got to the therapist (yep, I have a good list of excuses to justify that!) So just as I was working with my internist to see if my Effexor was a permanent part of life or just a temporarily needed boost to my system....the lump sent me to the mammogram which sent me to the ultrasound which sent me to the biopsy which sent me into this spiral of lving with cancer. So now that you've read through all that WTMI I can get to the 'paying lots of money for a good cry' part.
I don't want anyone to think that I haven't been recieving lots of good free cries over the last five years, the closet is free, the shower is free, my husband's shoulder is free, and phone calls to my friends to cry are free as long as I remember to call on the cell phone and not go over my monthly minutes! I know how to have a good cry...but the $100 dollar cry was one that I'm still considering the value of.
Serendipitously a friend of mine mentioned that she knew someone good to talk to, not that other friends haven't suggested names or suggested therapy, but somehow this time I was ready to listen, and the therapist met the requirements of taking my insurance, office with an easy commute, and the most important, returning my phone request for a call back to set up an appointment. So with a date on the calendar I geared myself up for a visit to a THERAPIST.
Funny thing happens when you make an appointment...it's like trying to get a mechanic to hear that funny clunking noise that you've heard in your car for months....life seems to be going fine- kids are good, house is relatively clean, husband is being extra thoughtful, emotions feel under control/normal and you seem to be coping fine and you are wondering what you really need to talk to a therapist for. But I'm one who is highly committed to things written down on the calendar (if I remember to look at it) and I arranged my schedule and showed up for my appointment.
Mistake number one: I didn't wear waterproof mascara!
I haven't cried for quite a while ( at least 2 weeks) so I quit wearing my waterproof mascara that I have been wearing since I found out I had cancer and started crying at random times when I would be talking to friends about how life was...I'm really just too lazy to use makeup remover to clean my eyelashes and I was happy to just be using normal mascara that washes off with soap and water. Besides there is a comfort in wearing normal mascara...it means you are "normal" and can go through the day without spontaneously bursting into tears about some random comment someone makes.
Mistake number two: My hormones are out of wack!
Because of Chemo my poor body is not sure what to think its hormonal age is--I still have all my blonde (well...dirty blonde and graying) hair but since baldness isn't a sure side affect of CMF I have to deal with the side effect of going into menopause at age 38...but it's not a for sure side affect, just a possibility and so my body can't decide whether to be young...or menopausal...so now I have no schedule to predict when my PMS days are...maybe now everyday is a PPMS day (a Perhaps Pre- Menopausal Syndrome). WTMI but the reality is that my emotional days were pretty predictable and now they aren't....so I was already a bit emotional when I went, just not on schedule enough to make me think "this is a waterproof mascara day"!
Mistake number three: I went to a therapist with a real couch and a real big box of kleenex within easy reach.
To make matters worse there was a beautiful water color painting on the wall that looked just like Josie and Julie riding the horses through the trees at the ranch (I need my waterproof mascara just writing about it). And the reality of all my losses immediately felt fresh and raw. It didn't really help that my therapist is a nice sympathetic, gentle speaking woman who makes you feel like you really should be crying about your life...and she is really good at just listening for a full hour while you try to talk about all the things on your list that she might possibly be able to give you advice about. So somehow I talked/cried a full hour until the secretary buzzed in to say "Your 11 o'clock appointment is here".
By the time I composed myself enough to walk down the hall, hope that the 11 o'clock appointment wasn't coming up the stairs (that might have scared them off!), and find my car I had somehow spent $100. Then I had to sit in my car for 15 minutes and think (as much as you can think with an I Just Cried for an Hour Headache) about what I had to show for my expenditure that wasn't nearly as fun as a drop-in visit to TJ MAXX. What I got out of the visit: go to the library or bookstore and get a DVD or book on Guided Imagry Relaxation, breath deeply and relax 20 minutes in the morning and 20 minutes in the evening. Write in my journal everyday (or blog...oops, now you know how well I followed that advice!). Keep talking to husband, friends and family....I'm doing that right. Look for support groups for my kids that don't have very supportive friends and read the PEOPLE CODE (more typically known as the color code) by Taylor Hartman.
So here I sit--giving myself some free therapy by writing WTMI for the world to read. And just in case you are wondering, I think about breathing deeply at least 5 times during the day...and I breathe deeply for as long as I can before I am distracted by the next thing that needs done. My personal librarian (who picks up, drops off and renews my books without a single reminder from me--The library is loosing out big time on predictable Johnson overdue fines!) has the requested books on hold or on search....and I am still thinking about support groups for the kids...they aren't too hip on the idea. I have written in my journal a few times and I am able to wear normal mascara, unless I blog. It took two days to recover from therapy....good thing I have at least 3 weeks to think about whether or not I really want to go again.
I went to bowling the next day and talked to anyone/everyone there who would listen (therapy for free) and came home with: no bloodshot, red, swollen eyes; no headache; lots of hugs and encouragement to keep on living and enjoying life; appreciation for the fact that other people have difficulties too and I don't necessarily want to switch my problems for theirs; a good laugh at the fact that I still always say "at least we are all healthy and happy" and I'm really talking about myself and my family as if we have no health issues to deal with; grattitude for female friend who don't try to offer solutions to my problems but just simpathize and tell me that I'm doing a great job of coping (they always say that it's the thought that counts and so I prefer to think of myself as coping just fine and then it will be true).
I'm really starting to think that the true therapists are the people around me who are willing to listen to me even when I give WTMI and don't send me a bill at the end of the conversation. In reality I have therapists in the form of the Baxter and Johnson families, my neighbors, at the school when I volunteer, at church, when I pick up kids from playdates, on the soccer and basketball sidelines, in my email inbox, on the answering machine, in the mail in the form of a card, at bowling on Wednesdays between chemo when I can actually lift the ball, all my Alliance friends, the JETS, my friends from DC, El Paso, New Orleans, Utah, Ricks College, USU, UTEP--you have all been telling me that I need to breath more deeply and blog more often--and it hasn't cost me a dime! I think I'll keep all you free therapists and throw in a shopping trip to TJ MAXX--no waterproof mascara required!
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