went to the movies with molly yesterday - "boy in the striped pajamas" - it's the first time i've been out around a lot of people and down by the beautiful truckee river since surgery. everything felt completely different. so aware of every smell, every color, every sound. it's so true what i've read about having cancer - it changes perception, enhances appreciation.
i love being with molly. i loved that movie. no one mother's grief surpasses any other mother's, no matter what side of the fence we're on.
we had hot sun yesterday, in the 70s. i was barefoot and happy on the porch all afternoon. I LOVE MY NEW BODY! i keep looking at myself in the mirror like an adolescent, and cannot BELIEVE i finally have the body i've dreamed of!!! i wore earrings yesterday for the first time in about 10 years. i don't wear any jewelry, not even a watch. i wish i were younger with this chest and i'd have more time to enjoy it. :) my chest is flat as a pancake and i'm 102 pounds. happiness. i can hardly wait to start running again. just walking up the four flights of stairs in the parking garage took a lot out of me yesterday. ridiculous.
thinking more about chemo and radiation. i'm so afraid. cried when looking through the Turning Heads book. i am just not ready to face it and i'm terrified i'll lose more of who i am. i've already lost so much, and i don't mean breasts, but so many other things since i've moved to reno. gained a lot, but have lost so much too. and now to think that i might lose my memory from chemo brain, or that my body might gain a LOT of weight or that i will lose my energy - it's all too much. debbie survived it and so did adriene and so have thousands and thousands of other women. but i don't want to do it. i'm anxious to talk to the oncologists this week and find out what they have in mind. but i won't say yes to them until i talk to friends and do the research. i don't want to do it. i can try to compartmentalize it - look at it as a block of time (6 months of treatment only?) to conquer and leave behind.
the three things i worried most about this last month and a half, that i heard were unbearably painful and awful - the core-needle biopsy, the isotope injection before the sentinel node biopsy, and the removal of the drains - were a piece of cake, in retrospect. i wasted so much time and energy dreading and worrying about those things. am i wasting time worry about chemo and radiation too?
Sunday, November 30, 2008
Saturday, November 29, 2008
11.29.08 - tethered
reading harold brodkey's "this wild darkness," about his diagnosis and impending death from AIDS.
"now i have the strangest imaginable tie to my own flesh; my body to me is like a crippled rabbit that i don't want to pet, that i forget to feed on time, that i haven't time to play with and get to know, a useless rabbit kept in a cage that it would be cruel to turn loose. it doesn't have a prayer for survival. or any chance of an easy death. it is mere half-eaten prey. like a captured snake or rabbit in an Audubon."
"i ought to have dinner. i haven't eaten or taken my pills - just a little suicide."
"it is a relief to have the future not be my speculative responsibility anymore and to escape from games of superiority and inferiority."
"i feel cut off from old age, it's true, but that's not like someone young feeling cut off from most of his or her possible life."
when i first decided for sure to have a double mastectomy, i felt relieved that i would never have to deal with old saggy breasts. i was going to throw away all my bras, but instead i put them in the back of my dresser drawer - thinking that i'd need to wear them around my mother, who has old-fashioned ideas and hates to be shocked. but i won't. i've told her i love my flat chest. i should give the bras to Goodwill - they are beautiful bras, rarely worn anyway. i remember when i was about five, watching my mom get dressed, i was crying and promised my mom i'd never wear bras! little did i know.
when the year turned to 2000, i had a familiar comforting knowledge that i know i'll die within this century; the life calendar clear before me. when i was diagnosed with cancer, i felt relieved to know what i'll most likely eventually die from - some other form of cancer in the future. people don't die of breast cancer; they die from recurrent breast cancer or another form of cancer that's metastasized. having triple negative and grade 3 cancer, i have a high rate for recurrence and metastasis. not much i can do about that except diet and exercise.
will chemo and radiation really make any bit of difference? it might prolong life temporarily and unnaturally, but the radiation might also give me leukemia. and there are thousands of side effects that can affect quality of life, some permanently. "chemo brain" is a real thing and a horrible thing. do i want to take that chance? i still want to refuse the chemo and radiation. i have appts to meet with my oncologists next week. i'm curious to know what they suggest in terms of treatment. i like knowing i can say no if i want to. i don't care what anyone thinks except my children. and i think they might understand. my main concern would be my mother, who will be struggling with her lung cancer soon enough. i need to be in a position where i can travel and spend time with her, and i think that means i have to take chemo and radiation. tethered to the medical community. tethered to life.
"now i have the strangest imaginable tie to my own flesh; my body to me is like a crippled rabbit that i don't want to pet, that i forget to feed on time, that i haven't time to play with and get to know, a useless rabbit kept in a cage that it would be cruel to turn loose. it doesn't have a prayer for survival. or any chance of an easy death. it is mere half-eaten prey. like a captured snake or rabbit in an Audubon."
"i ought to have dinner. i haven't eaten or taken my pills - just a little suicide."
"it is a relief to have the future not be my speculative responsibility anymore and to escape from games of superiority and inferiority."
"i feel cut off from old age, it's true, but that's not like someone young feeling cut off from most of his or her possible life."
when i first decided for sure to have a double mastectomy, i felt relieved that i would never have to deal with old saggy breasts. i was going to throw away all my bras, but instead i put them in the back of my dresser drawer - thinking that i'd need to wear them around my mother, who has old-fashioned ideas and hates to be shocked. but i won't. i've told her i love my flat chest. i should give the bras to Goodwill - they are beautiful bras, rarely worn anyway. i remember when i was about five, watching my mom get dressed, i was crying and promised my mom i'd never wear bras! little did i know.
when the year turned to 2000, i had a familiar comforting knowledge that i know i'll die within this century; the life calendar clear before me. when i was diagnosed with cancer, i felt relieved to know what i'll most likely eventually die from - some other form of cancer in the future. people don't die of breast cancer; they die from recurrent breast cancer or another form of cancer that's metastasized. having triple negative and grade 3 cancer, i have a high rate for recurrence and metastasis. not much i can do about that except diet and exercise.
will chemo and radiation really make any bit of difference? it might prolong life temporarily and unnaturally, but the radiation might also give me leukemia. and there are thousands of side effects that can affect quality of life, some permanently. "chemo brain" is a real thing and a horrible thing. do i want to take that chance? i still want to refuse the chemo and radiation. i have appts to meet with my oncologists next week. i'm curious to know what they suggest in terms of treatment. i like knowing i can say no if i want to. i don't care what anyone thinks except my children. and i think they might understand. my main concern would be my mother, who will be struggling with her lung cancer soon enough. i need to be in a position where i can travel and spend time with her, and i think that means i have to take chemo and radiation. tethered to the medical community. tethered to life.
Friday, November 28, 2008
11.28.08 - as tall as a little boy
sunny, warm day - porch door and windows open - birds in the bird bath on my porch
slept all night, woke up late - the first time in months
shower! looking down at my chest - i think it's beautiful - want to take macro photos of the stitches and purple ink
suddenly i'm filled with energy again - i am back at work
ordered all the christmas gifts online this morning - feels good to be organized
my mom saw this photo of me yesterday and said, "why don't you want to get fake boobs so people won't think you're a little boy?" she really doesn't understand at all that i love looking like this and that i don't give two hoots about what people think. jimmy said, "you're a beautiful woman who is as tall as a little boy." he's a poet.
i feel very happy today
slept all night, woke up late - the first time in months
shower! looking down at my chest - i think it's beautiful - want to take macro photos of the stitches and purple ink
suddenly i'm filled with energy again - i am back at work
ordered all the christmas gifts online this morning - feels good to be organized
my mom saw this photo of me yesterday and said, "why don't you want to get fake boobs so people won't think you're a little boy?" she really doesn't understand at all that i love looking like this and that i don't give two hoots about what people think. jimmy said, "you're a beautiful woman who is as tall as a little boy." he's a poet.
i feel very happy today
Thursday, November 27, 2008
11.27.08 - night thoughts
a quiet day. my body was exhausted, needed to rest all day. wrote thank-you letters, talked to friends. watched "Ghost World" again - what a magnificent film. M called from yosemite, is blissed out to be at Camp 4 again. J called several times from L.A. he sent me an e-mail:
>>I can't tell you how good that trip was for me, momma. I am so utterly grateful that everything went better than expected and that you're feeling happy and healthy and optimistic and strong. I am very proud to be your son, and you continue to inspire me after all these years...
- Your son>>
we've been planning to go back to paris together since our last trip in 2003. where i met his father in 1975 when we were students at alliance francaise for a year in college. i love paris the way he loves NYC. i'm so glad he's following his dream to live there. he misses the seasons and rain and culture. i miss french all around me, the sounds of horns honking in small streets, the smell of paris. i miss speaking french and no english. i can hardly wait to spend two full days with my holga cameras at pere lachaise cemetery. i have been postponing this trip for years because i kept waiting for both J and M to be able to go with me. no more waiting. we're going after chemo and radiation and recovery.
je t'aime, mon cher fils.
my entire chest area felt tingly and sensitive and odd today. the stitches are healing. took a pain pill. ate blueberries and dried apricots and forced myself to eat chicken and brown rice and broccoli and kale. lots of water. creatine. all my vitamins and supplements. have no appetite.
a wonderful and quiet thanksgiving. so much to be thankful for.
>>I can't tell you how good that trip was for me, momma. I am so utterly grateful that everything went better than expected and that you're feeling happy and healthy and optimistic and strong. I am very proud to be your son, and you continue to inspire me after all these years...
I am grateful for our friendship and connection, for our ability to fight and resolve things quickly, knowing that it comes from a place of love at all times (and fear for you sometimes, haha).
Let's actually plan a trip-- one that we've been postponing for some time, after you have as successful a chemo experience as you did your surgery!
I love you SOOOOOOO much!
we've been planning to go back to paris together since our last trip in 2003. where i met his father in 1975 when we were students at alliance francaise for a year in college. i love paris the way he loves NYC. i'm so glad he's following his dream to live there. he misses the seasons and rain and culture. i miss french all around me, the sounds of horns honking in small streets, the smell of paris. i miss speaking french and no english. i can hardly wait to spend two full days with my holga cameras at pere lachaise cemetery. i have been postponing this trip for years because i kept waiting for both J and M to be able to go with me. no more waiting. we're going after chemo and radiation and recovery.
je t'aime, mon cher fils.
my entire chest area felt tingly and sensitive and odd today. the stitches are healing. took a pain pill. ate blueberries and dried apricots and forced myself to eat chicken and brown rice and broccoli and kale. lots of water. creatine. all my vitamins and supplements. have no appetite.
a wonderful and quiet thanksgiving. so much to be thankful for.
11.27.08 - happy thanksgiving and a shower!
to think one week ago i was in the hospital having surgery. it feels like years ago. so much to be thankful for - i have my new, healthy body, no more bandages or drains, sleeping well, can drive, shop, everything. i have over 400 emails from friends on flickr with their good wishes, a stack of cards from friends, gifts all over my house from so many people - how can i thank everyone?? so thankful for my sons, who were with me every second and were so gentle with me and so loving. bobbi gillis, barbara nowak, kitty chamberlain. my surgeon and the anesthesiologist. the nurses. everyone.
i woke up this morning and thought about shaving my head before chemo. made me cry. i was planning to have my head shaved soon, since chemo will probably start in 2 weeks. but the thought of being bald so soon - i just can't do it. there's so much to absorb already about having had a double mastectomy. looking at my chest is so curious - the purple ink from the stitches - like someone drew on me with a shaky hand. the incision from the sentinel node biopsy. the two small incisions from the drains. i feel like a tadpole - odd-looking, not whole but evolving somehow. i love feeling so tiny and weighing so little. 102 this morning.
finally was able to take a shower! stood under the warm water for a long time, eyes closed. washed my hair, which is so short it takes no time at all. feels like i cut my long hair ages ago, but it was recently. what will it feel like in a shower with a bald head? thinking about stuart and i taking showers together in mexico and at home - especially in the pool in mexico, wrapped around each other for hours. i will never forget that passion.
happy thanksgiving to everyone who has been reading my words and sending me such wonderful, positive, healing thoughts. xoxoxox
i woke up this morning and thought about shaving my head before chemo. made me cry. i was planning to have my head shaved soon, since chemo will probably start in 2 weeks. but the thought of being bald so soon - i just can't do it. there's so much to absorb already about having had a double mastectomy. looking at my chest is so curious - the purple ink from the stitches - like someone drew on me with a shaky hand. the incision from the sentinel node biopsy. the two small incisions from the drains. i feel like a tadpole - odd-looking, not whole but evolving somehow. i love feeling so tiny and weighing so little. 102 this morning.
finally was able to take a shower! stood under the warm water for a long time, eyes closed. washed my hair, which is so short it takes no time at all. feels like i cut my long hair ages ago, but it was recently. what will it feel like in a shower with a bald head? thinking about stuart and i taking showers together in mexico and at home - especially in the pool in mexico, wrapped around each other for hours. i will never forget that passion.
happy thanksgiving to everyone who has been reading my words and sending me such wonderful, positive, healing thoughts. xoxoxox
Wednesday, November 26, 2008
11.26.08 - the mom blessing
wore real clothes. had to wear a belt for my jeans. i'm 102 today. i'm forcing myself to eat and gain weight before chemo, but i have no appetite at all.
drove over to matt's. the area of the drain incisions are still sore, but i can drive just fine.
going over to M's this morning to do the "mom blessing" on all his climbing gear before he packs it and leaves for four days of climbing at yosemite. even though i am an atheist, this is something i have to do. it has nothing to do with a god. it's my energy and an instinctual need to protect him. i touch every piece of equipment he'll be using and give it my blessing. i've always done it since he was little, even blessed every part of the cars he's driven and of course the damn motorcycles. i also touch his hands and legs and head and spine and his boots and do my thing so that he wouldn't fall when climbing. i'm shocked he puts up with it. maybe he sort of believes in it too.
did laundry, made my bed. drove to the grocery store for kale and to make a deposit at the ATM. it all took a lot out of me. too tired to even write in my journal.
kitty came over with an orchid and berries and muscle milk and photos. a wonderful visit. i am so glad matt has her as his other mother! that is one of the things that makes it easier for me having cancer. if i do die of cancer, i know matt is in good hands with kitty, his mother-in-law.
a nice long slow rain tonight. i wrote by the fireplace. watched "little miss sunshine" - one of my favorite movies - also "lars and the real girl."
so strange to have all this quiet around me, everyone gone.
took the bandages off the drain incisions and finally slept on my left side like i usually do, not propped up. had a REAL sleep. no dreams.
drove over to matt's. the area of the drain incisions are still sore, but i can drive just fine.
going over to M's this morning to do the "mom blessing" on all his climbing gear before he packs it and leaves for four days of climbing at yosemite. even though i am an atheist, this is something i have to do. it has nothing to do with a god. it's my energy and an instinctual need to protect him. i touch every piece of equipment he'll be using and give it my blessing. i've always done it since he was little, even blessed every part of the cars he's driven and of course the damn motorcycles. i also touch his hands and legs and head and spine and his boots and do my thing so that he wouldn't fall when climbing. i'm shocked he puts up with it. maybe he sort of believes in it too.
did laundry, made my bed. drove to the grocery store for kale and to make a deposit at the ATM. it all took a lot out of me. too tired to even write in my journal.
kitty came over with an orchid and berries and muscle milk and photos. a wonderful visit. i am so glad matt has her as his other mother! that is one of the things that makes it easier for me having cancer. if i do die of cancer, i know matt is in good hands with kitty, his mother-in-law.
a nice long slow rain tonight. i wrote by the fireplace. watched "little miss sunshine" - one of my favorite movies - also "lars and the real girl."
so strange to have all this quiet around me, everyone gone.
took the bandages off the drain incisions and finally slept on my left side like i usually do, not propped up. had a REAL sleep. no dreams.
Tuesday, November 25, 2008
11.25.08 - drains removed - got pathology report
J took me to the dr. appt to have the drains removed. i was so terrified. heard it was a painful, awful procedure. it took 3 minutes and i never felt any pain. i have been so lucky this entire time - such easy surgery and recovery.
the nurse gave me a big hug. it's weird to be a "cancer person." all these hugs and "good luck" and "you're so brave." that's not brave. what's brave is a soldier saying, "hell, no, i'm not going to george bush's war!"
finally i can move any way i want to! the drain incisions are taped and sore, but that should last two days and then i can shower.
J washes all the sheets and brought groceries and has everything ready for me.
J leaves for L.A. big hugs. i miss him already.
finally got the full pathology report. T1, N0! cancer had not spread to the lymph system. 1.2 cm tumor. Grade 3. Triple Negative. won't know about metastasis until later. it's so bizarre to read every detail of the surgery. "this is a very pleasant 54-year-old woman diagnosed with a high-grade right breast infiltrating ductal cancer, ER, PR negative. HER-2/neu negative. "
"the right breast was massaged gently for 5 minutes and then her entire chest wall and right arm were prepped ..." Matt said, "Mom, your breast went out with style! a 5-minute massage!"
right breast - 467 grams
left breast - 405 grams
how entirely strange to read about the weight of my breasts. on my consent form, i gave permission to give them to research. completely strange to think of them in bottles somewhere.
received a lovely card from paula, with breast cancer stamps.
jimmy walker donated to american cancer society in my name. that was such a shock to get in the mail today - my name associated with cancer. but such a loving gesture.
two dozen roses from a woman on flickr i've only met once, at the golden gate park photography workshop i gave - yelena. how incredibly nice.
tired. very tired.
wore real clothes - no more PJs. jeans and a teeshirt. i look like i'm 12.
now i have to get strong for chemo. i weigh 103. my size 4 jeans are falling off of me.
i'm so proud of my boys. they were with me every single second.
the nurse gave me a big hug. it's weird to be a "cancer person." all these hugs and "good luck" and "you're so brave." that's not brave. what's brave is a soldier saying, "hell, no, i'm not going to george bush's war!"
finally i can move any way i want to! the drain incisions are taped and sore, but that should last two days and then i can shower.
J washes all the sheets and brought groceries and has everything ready for me.
J leaves for L.A. big hugs. i miss him already.
finally got the full pathology report. T1, N0! cancer had not spread to the lymph system. 1.2 cm tumor. Grade 3. Triple Negative. won't know about metastasis until later. it's so bizarre to read every detail of the surgery. "this is a very pleasant 54-year-old woman diagnosed with a high-grade right breast infiltrating ductal cancer, ER, PR negative. HER-2/neu negative. "
"the right breast was massaged gently for 5 minutes and then her entire chest wall and right arm were prepped ..." Matt said, "Mom, your breast went out with style! a 5-minute massage!"
right breast - 467 grams
left breast - 405 grams
how entirely strange to read about the weight of my breasts. on my consent form, i gave permission to give them to research. completely strange to think of them in bottles somewhere.
received a lovely card from paula, with breast cancer stamps.
jimmy walker donated to american cancer society in my name. that was such a shock to get in the mail today - my name associated with cancer. but such a loving gesture.
two dozen roses from a woman on flickr i've only met once, at the golden gate park photography workshop i gave - yelena. how incredibly nice.
tired. very tired.
wore real clothes - no more PJs. jeans and a teeshirt. i look like i'm 12.
now i have to get strong for chemo. i weigh 103. my size 4 jeans are falling off of me.
i'm so proud of my boys. they were with me every single second.
Monday, November 24, 2008
11.24.08 - i HAD cancer
last night J and i watched "stranger than fiction." myla had told me to watch it last month - the perfect movie to watch after i found out i had cancer.
slept till 9 this morning. haven't slept this late in years.
took the sports bra off. it was way too tight. now i only have gauze. closer to having my new body.
hours on the phone today - debbie, adriene, michelle.
sent photos of my chest to my friends - the real thing, no gauze, just stitches. i have no negative feelings about it. i feel like i've been trapped in this body always. the form changes, but i feel the same. i love having a flat chest.
the drains a huge nuisance.
no report from the surgery yet. should i worry? need to know if the cancer spread through the lymph nodes.
ralph lauren PJs - so comfy
Matt retaped my chest. much better.
M and molly over for dinner - M cooked and molly did all the dishes. a nice break for J. i feel so pampered.
i am so worried about lymphedema, although my arms seem completely fine. no draining at all from the drains. tomorrow i hope the dr. will remove them. i've heard such awful things about that procedure -- i'm scared. J insists on taking me instead of going back to L.A. early.
dried apricots, protein smoothies, chicken, tons of water, vitamins, fish oil supplement, calcium and Vit D, creatine with juice
i don't feel like i have cancer inside me anymore. i'm just now realizing i really did have cancer. i never thought of the tumor in a negative way. it felt so small and self-contained. but now i look at my chest and i see i really had cancer. i hate the term "cancer survivor." but now i see what it means. i still refuse to wear pink.
this cancer created some fabulous ripple effects - J and M both stopped smoking and are getting healthier. another person close to me stopped smoking. four more people are going to try. five women are getting mammograms that otherwise were too afraid to.
after chemo and radiation, i want to volunteer at the hospital. barbara is director of volunteers at renown. i asked her to sign me up!
so much to be thankful for.
slept till 9 this morning. haven't slept this late in years.
took the sports bra off. it was way too tight. now i only have gauze. closer to having my new body.
hours on the phone today - debbie, adriene, michelle.
sent photos of my chest to my friends - the real thing, no gauze, just stitches. i have no negative feelings about it. i feel like i've been trapped in this body always. the form changes, but i feel the same. i love having a flat chest.
the drains a huge nuisance.
no report from the surgery yet. should i worry? need to know if the cancer spread through the lymph nodes.
ralph lauren PJs - so comfy
Matt retaped my chest. much better.
M and molly over for dinner - M cooked and molly did all the dishes. a nice break for J. i feel so pampered.
i am so worried about lymphedema, although my arms seem completely fine. no draining at all from the drains. tomorrow i hope the dr. will remove them. i've heard such awful things about that procedure -- i'm scared. J insists on taking me instead of going back to L.A. early.
dried apricots, protein smoothies, chicken, tons of water, vitamins, fish oil supplement, calcium and Vit D, creatine with juice
i don't feel like i have cancer inside me anymore. i'm just now realizing i really did have cancer. i never thought of the tumor in a negative way. it felt so small and self-contained. but now i look at my chest and i see i really had cancer. i hate the term "cancer survivor." but now i see what it means. i still refuse to wear pink.
this cancer created some fabulous ripple effects - J and M both stopped smoking and are getting healthier. another person close to me stopped smoking. four more people are going to try. five women are getting mammograms that otherwise were too afraid to.
after chemo and radiation, i want to volunteer at the hospital. barbara is director of volunteers at renown. i asked her to sign me up!
so much to be thankful for.
Sunday, November 23, 2008
11.23.08 - taking off the bandages
lovely sleep last night. can't wait to take off these bandages and get rid of these drains.
antibiotics and pain meds
i live in this little sphere of sleep
now i have how much time before chemo and the unknown?
one step at a time - just get through it
sad when i think of J leaving
barbara's wonderful visit and her gift of the jelly bath! i love her so much.
naps.
sunshine. J and i videotaping each other.
i waited until around 2 to take off the bandages. J helped me and took photos. so many unexpected feelings. when i released the velcro and unwrapped the bandage twice, the pressure gave way and that was so frightening. i held my body for a long time, started crying. unwrapped the bandages slowly. lots of gauze against my chest. i did not take the gauze off in front of J, even though he wouldn't have minded. i did that alone. i look concave and so tiny. the stitches are self-dissolving and there are two straight purple lines across where my breasts were. not much bruising and no swelling. i'm more curious than anything - felt nothing except relief to get the bandage off. my back is itching like mad because of the bandage. J is an angel--scratching my back. i put a sports bra over the gauze because my chest feels so tender.
J signs up for dancing classes in L.A. he'll move to NYC soon enough, where his heart is.
these drains are an enormous nuisance. haven't been draining much at all since i got home. they aren't fragile. i throw them over my shoulder when i take a bath.
videos and photos and lots of talking with J and M. phone calls, emails, flickr. it's all a blur.
antibiotics and pain meds
i live in this little sphere of sleep
now i have how much time before chemo and the unknown?
one step at a time - just get through it
sad when i think of J leaving
barbara's wonderful visit and her gift of the jelly bath! i love her so much.
naps.
sunshine. J and i videotaping each other.
i waited until around 2 to take off the bandages. J helped me and took photos. so many unexpected feelings. when i released the velcro and unwrapped the bandage twice, the pressure gave way and that was so frightening. i held my body for a long time, started crying. unwrapped the bandages slowly. lots of gauze against my chest. i did not take the gauze off in front of J, even though he wouldn't have minded. i did that alone. i look concave and so tiny. the stitches are self-dissolving and there are two straight purple lines across where my breasts were. not much bruising and no swelling. i'm more curious than anything - felt nothing except relief to get the bandage off. my back is itching like mad because of the bandage. J is an angel--scratching my back. i put a sports bra over the gauze because my chest feels so tender.
J signs up for dancing classes in L.A. he'll move to NYC soon enough, where his heart is.
these drains are an enormous nuisance. haven't been draining much at all since i got home. they aren't fragile. i throw them over my shoulder when i take a bath.
videos and photos and lots of talking with J and M. phone calls, emails, flickr. it's all a blur.
11.22.08 - itching
itching like crazy on my sides and back from the bandages. my entire chest is numb. couldn't sleep because of the itching. where is my pool boy? :)
called the doctor about backache. he increased meds to two pain pills every four hours. lortab 7.5
drank coffee as if life were normal
matt and molly over for dinner last night - our family so loving
J and M are cute together - brothers who hug
J and i stayed up late, working on text for his amazing website: manifestvideography.com
we videotaped each other being silly
i feel dreamy all the time - the meds
sleep and pills. will be so happy when i can sleep without pillows and incline. cannot wait to get this tight bandage off.
called the doctor about backache. he increased meds to two pain pills every four hours. lortab 7.5
drank coffee as if life were normal
matt and molly over for dinner last night - our family so loving
J and M are cute together - brothers who hug
J and i stayed up late, working on text for his amazing website: manifestvideography.com
we videotaped each other being silly
i feel dreamy all the time - the meds
sleep and pills. will be so happy when i can sleep without pillows and incline. cannot wait to get this tight bandage off.
Saturday, November 22, 2008
11.22.08 - hit by a mack truck
woke up this morning at 4 a.m. and had been run over by a mack truck many, many times. my entire body sore. my throat hurts from the breathing tube used during surgery. the side of my mouth is swollen. i heard that i would feel this way on Day 2. i have never felt this sore. it makes me want to get up and run and stretch.
last night i took a bath up to my waist. heaven.
my bedspread is floral - with red roses. this morning i woke up and thought there was blood all over my bed from the drains - it was just the damn bedspread. panic.
listened to my iPod and slept until 7. felt like i was in a bubble.
so thankful i can move my arms - no pain.
today i laughed so much with debbie buckner on the phone. she's so good for my spirit. talked to mom. sharon came over with the most amazing chicken soup. a good visit. back hurting. pain pills and sleep.
jimmy my angel. making smoothies for me, cooking lunch, making me laugh.
wrote in my journal in the rocking chair on the porch in the sun. i am so happy i left pacifica - 8 years of cold fog. it's like summer here this week - in the 70s, bright sun.
more napping. my cozy flannel sheets, dark room, lots of pillows, no phone, deep sleep in another world. no dreams.
J has stopped smoking. he dreamed a doctor was scrubbing out his lungs.
received the most beautiful gift from susanne - a necklace of a phoenix and a lovely note about the significance of it to her. a heart and lavender from melinda. incredible pinhole photo from erin malone. cards and gifts. over 400 emails from flickr friends.
"you're so brave and amazing." no, i am really not.
when i think about taking off the bandages tomorrow, i cry. the reality. i'm so glad i did this but maybe it will be traumatic somehow to see my new body.
in limbo. i won't need to work for several weeks - delegated everything. i feel like i'm levitating with the pain meds. was told to take them, even though i feel no pain. i have my own internal life of thoughts and nighttime and sleeping and my body and the pressure of these tight bandages, the drains and the blood to remind me of inside my body. watching my sons care for me. sunshine and napping.
lots of water. dried apricots. chicken. smoothies. more water. more water. more water.
last night i took a bath up to my waist. heaven.
my bedspread is floral - with red roses. this morning i woke up and thought there was blood all over my bed from the drains - it was just the damn bedspread. panic.
listened to my iPod and slept until 7. felt like i was in a bubble.
so thankful i can move my arms - no pain.
today i laughed so much with debbie buckner on the phone. she's so good for my spirit. talked to mom. sharon came over with the most amazing chicken soup. a good visit. back hurting. pain pills and sleep.
jimmy my angel. making smoothies for me, cooking lunch, making me laugh.
wrote in my journal in the rocking chair on the porch in the sun. i am so happy i left pacifica - 8 years of cold fog. it's like summer here this week - in the 70s, bright sun.
more napping. my cozy flannel sheets, dark room, lots of pillows, no phone, deep sleep in another world. no dreams.
J has stopped smoking. he dreamed a doctor was scrubbing out his lungs.
received the most beautiful gift from susanne - a necklace of a phoenix and a lovely note about the significance of it to her. a heart and lavender from melinda. incredible pinhole photo from erin malone. cards and gifts. over 400 emails from flickr friends.
"you're so brave and amazing." no, i am really not.
when i think about taking off the bandages tomorrow, i cry. the reality. i'm so glad i did this but maybe it will be traumatic somehow to see my new body.
in limbo. i won't need to work for several weeks - delegated everything. i feel like i'm levitating with the pain meds. was told to take them, even though i feel no pain. i have my own internal life of thoughts and nighttime and sleeping and my body and the pressure of these tight bandages, the drains and the blood to remind me of inside my body. watching my sons care for me. sunshine and napping.
lots of water. dried apricots. chicken. smoothies. more water. more water. more water.
Friday, November 21, 2008
11.21.08 - thoughts being home
home
bandages around me like tight rubber bands
backache
comfort
jimmy with me every second
matt and i play gin rummy - first time we've played this in years
fire in the fireplace
tired
i'm home.
yesterday -
i drove us to the hospital
holding jimmy's arm as we walk to the admitting office
"this is the last time my breasts will be in this parking lot!" laughing.
waiting in the room - all that color purple
taking photos of ourselves and laughing
the nurse and private pre-op room
blue gown and socks, curtains
waiting
xanax with a tiny sip of water
the ride on the gurney to nuclear medicine, isotope injection, felt like i was in a TV show
4 needles and burning
bobbi so comforting, holding my arm
told me to visualize my favorite place - that made me cry
so i visualized being in my grandparents' kitchen and dad is there. they are holding me.
the nursing talking to me about my photography. everybody knows flickr!
back to the pre-op room and matt is there too.
the anesthesiologist - very nice
the IV, and that was that
the kids said i said, "i've never even had pot before! i feel like i'm on a roller coaster! wheee! and as they were rolling me to surgery, i said, "i need a hug!" and they let the boys hug me.
next thing i remember, dr chu is with me in recovery. i ask her if she really did the surgery, because i heard a man talking to me the entire time.
then i remember a deliciously warm blanket all around me, even my head. and i remember the boys kissing me in my room. i felt ecstatic, so happy, i was beaming. no pain whatsoever.
we watched Reno 911 on TV and laughed ourselves silly.
jimmy and i videotaped each other arguing over who had it worse - me with the surgery or him quitting smoking! lots of laughing.
the automatic leg pulsing gizmos on my legs, making my legs pump the circulation. so strange. all night long.
a private room with view of the mountains. very quiet.
it felt like a slumber party - jimmy and i laughing. he slept on a bed in a sleeping bag.
the backache that wouldn't stop and made me cry. the nurse gave me morphine which was the oddest feeling ever, didn't like it.
the nurse taking my vitals during the night. "how sad this happened to you, so young."
"what? i'm 54 years old!"
"how do you keep your skin so beautiful?"
"must be the cancer."
very early morning. J sleeping. i listen to my iPod and check email on my blackberry. how strange to be connected to so many people from my hospital bed.
the incredibly shitty food they brought for lunch. are they trying to kill their patients? i ate a larabar and drank a lot of water.
the two drains from my sides. completely strange. easy to deal with, but awful to have next to me and feel so fragile.
bobbi brings me a huge basket gift from shannon bannister, a nurse who had breast cancer, who received money from a foundation to give women with breast cancer a basket - lotions, fiji water, pink socks, susan love's breast book, cleanser, wonderful gifts. and a shawl knit by a woman in sparks. a cami for the drains from komen foundation. so lovely.
dr. chu comes to check on me. tells me she removed only 2 nodes! that's miraculous. i expected at least 16-30 and bad news. but this is the best news ever - means the cancer did not spread through the lymph system. that's why i can move my arms. she said i can go home.
the guy with the wheelchair. "goodbye, room."
people smoking outside the hospital as i leave. jesus christ! have some cancer!! idiots. i wanted to open up my shirt and show them my scars - hey, you want this?! smoke some more! i have never smoked, but smoking could lead them to Mastectomy Central.
home! sunshine! the boys being so tender with me. i felt so loved. J cooks lunch. M and i have amy's pizza. later, M leaves and J and i watch videos. antibiotics every 8 hours, pain meds every 6 hours.
huge velcro Ace bandage around my chest, so incredibly tight. gauze on my chest underneath the bandage. i feel so very small. the incision for the sentinel node biopsy is not under my arm like i thought it would be; it's much lower. i can move my arms in every direction! what a miracle and totally unexpected.
a difficult, weird night of sleep. up every 2 hours to pee. the drains a total pain in the ass. they're not very fragile, but they're in the way. reminded me so much of when J and M were little and i was exhausted and needed a break from them. the days of two car seats, a boy on one hip, one holding my hand. i was tired for decades. and now those little kids are caring for me and right by my side every minute of this experience. i feel so loved.
bandages around me like tight rubber bands
backache
comfort
jimmy with me every second
matt and i play gin rummy - first time we've played this in years
fire in the fireplace
tired
i'm home.
yesterday -
i drove us to the hospital
holding jimmy's arm as we walk to the admitting office
"this is the last time my breasts will be in this parking lot!" laughing.
waiting in the room - all that color purple
taking photos of ourselves and laughing
the nurse and private pre-op room
blue gown and socks, curtains
waiting
xanax with a tiny sip of water
the ride on the gurney to nuclear medicine, isotope injection, felt like i was in a TV show
4 needles and burning
bobbi so comforting, holding my arm
told me to visualize my favorite place - that made me cry
so i visualized being in my grandparents' kitchen and dad is there. they are holding me.
the nursing talking to me about my photography. everybody knows flickr!
back to the pre-op room and matt is there too.
the anesthesiologist - very nice
the IV, and that was that
the kids said i said, "i've never even had pot before! i feel like i'm on a roller coaster! wheee! and as they were rolling me to surgery, i said, "i need a hug!" and they let the boys hug me.
next thing i remember, dr chu is with me in recovery. i ask her if she really did the surgery, because i heard a man talking to me the entire time.
then i remember a deliciously warm blanket all around me, even my head. and i remember the boys kissing me in my room. i felt ecstatic, so happy, i was beaming. no pain whatsoever.
we watched Reno 911 on TV and laughed ourselves silly.
jimmy and i videotaped each other arguing over who had it worse - me with the surgery or him quitting smoking! lots of laughing.
the automatic leg pulsing gizmos on my legs, making my legs pump the circulation. so strange. all night long.
a private room with view of the mountains. very quiet.
it felt like a slumber party - jimmy and i laughing. he slept on a bed in a sleeping bag.
the backache that wouldn't stop and made me cry. the nurse gave me morphine which was the oddest feeling ever, didn't like it.
the nurse taking my vitals during the night. "how sad this happened to you, so young."
"what? i'm 54 years old!"
"how do you keep your skin so beautiful?"
"must be the cancer."
very early morning. J sleeping. i listen to my iPod and check email on my blackberry. how strange to be connected to so many people from my hospital bed.
the incredibly shitty food they brought for lunch. are they trying to kill their patients? i ate a larabar and drank a lot of water.
the two drains from my sides. completely strange. easy to deal with, but awful to have next to me and feel so fragile.
bobbi brings me a huge basket gift from shannon bannister, a nurse who had breast cancer, who received money from a foundation to give women with breast cancer a basket - lotions, fiji water, pink socks, susan love's breast book, cleanser, wonderful gifts. and a shawl knit by a woman in sparks. a cami for the drains from komen foundation. so lovely.
dr. chu comes to check on me. tells me she removed only 2 nodes! that's miraculous. i expected at least 16-30 and bad news. but this is the best news ever - means the cancer did not spread through the lymph system. that's why i can move my arms. she said i can go home.
the guy with the wheelchair. "goodbye, room."
people smoking outside the hospital as i leave. jesus christ! have some cancer!! idiots. i wanted to open up my shirt and show them my scars - hey, you want this?! smoke some more! i have never smoked, but smoking could lead them to Mastectomy Central.
home! sunshine! the boys being so tender with me. i felt so loved. J cooks lunch. M and i have amy's pizza. later, M leaves and J and i watch videos. antibiotics every 8 hours, pain meds every 6 hours.
huge velcro Ace bandage around my chest, so incredibly tight. gauze on my chest underneath the bandage. i feel so very small. the incision for the sentinel node biopsy is not under my arm like i thought it would be; it's much lower. i can move my arms in every direction! what a miracle and totally unexpected.
a difficult, weird night of sleep. up every 2 hours to pee. the drains a total pain in the ass. they're not very fragile, but they're in the way. reminded me so much of when J and M were little and i was exhausted and needed a break from them. the days of two car seats, a boy on one hip, one holding my hand. i was tired for decades. and now those little kids are caring for me and right by my side every minute of this experience. i feel so loved.
11.21.08 - the day after surgery - HOME!
as i type this, i'm already home!!! this photo was taken yesterday after the double mastectomy.
my wonderful, loving nurse navigator, bobbie gillis, stayed with me during the istope injection for the sentinel node biopsy, and it wasn't as bad as i had feared. i waited three hours in post-op with my kids. when i received the shot for anesthesia, my kids said that i said, "i've never even smoked pot before. this is like being on a roller coaster! wheee!" (how embarrassing!) and then when i was rolled down the hall, i said, "i need a hug!" and the kids hugged me before i went to surgery.
next thing i knew, i was in recovery. after surgery, i felt no pain at all. the good news is that the surgeon removed only two lymph nodes and that means the cancer has probably not spread. we will know for sure on monday or tuesday when the pathology report comes back. i have full range of motion of both of my arms, which is so wonderful and unexpected. i'm already home and able to walk around, and i feel great. i will remove the bandages on sunday and have my new body! i have always wanted a flat chest - be careful what you ask for. :)
my sons were magnificent through this, and my oldest son slept in the hospital room with me last night. it was like a slumber party and we laughed a lot.
Susan B. Komen Foundation gives every mastectomy patient a cami to wear for the mastectomy drains, and later it serves as a cotton cami with areas for fake cotton breasts to be inserted. very interesting.
susan bannister, one of the nurses at renown, who is in her thirties and had breast cancer and a double mastectomy, has been funded by a foundation to give a gift basket to mastectomy patients - i was fortunate enough to be the first recipient. thank you, shannon, for all the goodies in the basket and for your thoughtfulness.
for the next two or three days i'm going to watch movies with my sons, play cards, sit on my porch in the sun in my rocking chair, and appreciate my new body and my new life.
i cannot possibly tell you all how much your comments, emails, gifts, and phone calls have meant to me. i will never, ever forget it. much love from the bottom of my heart. xoxoxox
Thursday, November 20, 2008
11.20.08 - 6:00 a.m.
still in bed. surgery in 8.5 hours
one week before thanksgiving.
today is the day. called mom when i woke up. she said, "be a good girl." she was crying. this is so hard to hear her cry.
woke up to lots of emails from friends.
i'm still not afraid. mom said, "you're in 'go' mode!"
i am handing myself over to fate and trust and hope. hope dr. chu is as great a surgeon as i have heard. hope i can come home tomorrow. hope the nodes are negative. hope the isotope injection isn't awful. hope i'm doing the right thing, going down the chemo and radiation road.
dreamed that a dog i loved came to me and i was hugging him, so happy, he was made of some kind of jello material. the feeling was such bliss--he was so happy and so was i. i gave him a bone and he was chewing on it, his tail wagging.
it's all so surreal - wish my time with the boys was better spent in paris, not with this cancer thing.
this damn $5000 deductible would have paid for a great paris trip.
all these hours i've spent with cancer books, people, etc., could have had plenty of time for photos and travel.
just letting go and letting handing myself over to fate today.
so grateful for my sweet young men sons.
not feeling sentimental about my breasts.
today i truly start a life with cancer, tethered to the medical community.
time for a year or so of treatment and recovery, focusing on exercise, diet, strength.
do my best.
pray that J and M stay healthy.
such an intense journey to teach me a lesson and wake me up.
such an enormous amount of time i could spend otherwise.
is it really genetic or did i cause this?
i do not want J or M to get cancer.
what will life be like now when i'm alone and thinking?
maybe life in a weird way will be better.
my last shower this morning with my body as i know it.
so very strange.
one week before thanksgiving.
today is the day. called mom when i woke up. she said, "be a good girl." she was crying. this is so hard to hear her cry.
woke up to lots of emails from friends.
i'm still not afraid. mom said, "you're in 'go' mode!"
i am handing myself over to fate and trust and hope. hope dr. chu is as great a surgeon as i have heard. hope i can come home tomorrow. hope the nodes are negative. hope the isotope injection isn't awful. hope i'm doing the right thing, going down the chemo and radiation road.
dreamed that a dog i loved came to me and i was hugging him, so happy, he was made of some kind of jello material. the feeling was such bliss--he was so happy and so was i. i gave him a bone and he was chewing on it, his tail wagging.
it's all so surreal - wish my time with the boys was better spent in paris, not with this cancer thing.
this damn $5000 deductible would have paid for a great paris trip.
all these hours i've spent with cancer books, people, etc., could have had plenty of time for photos and travel.
just letting go and letting handing myself over to fate today.
so grateful for my sweet young men sons.
not feeling sentimental about my breasts.
today i truly start a life with cancer, tethered to the medical community.
time for a year or so of treatment and recovery, focusing on exercise, diet, strength.
do my best.
pray that J and M stay healthy.
such an intense journey to teach me a lesson and wake me up.
such an enormous amount of time i could spend otherwise.
is it really genetic or did i cause this?
i do not want J or M to get cancer.
what will life be like now when i'm alone and thinking?
maybe life in a weird way will be better.
my last shower this morning with my body as i know it.
so very strange.
11.20.08 - midnight before surgery
finally in bed.
surgery will be in 14.5 hours.
such a long days. errands. drinking gallons of water.
matt stayed all evening. having my boys here is like christmas.
they do everything i ask! ha!
eating lots of food like the dietitian told me to - so strange to eat so much.
worried i will never be size 4 again after chemo.
i love feeling thin.
water and more water until midnight.
wrote all my thanksgiving notes to mail next week.
two teddy bears and love notes to J and M.
my last bath with my breasts. candles.
i've been ready for this for so long, i didn't even cry.
i might love my flat chest. i don't know.
so many phone calls from friends today, and emails, and more gifts and cards. overwhelming gratitude.
i'm exhausted.
sleep.
surgery will be in 14.5 hours.
such a long days. errands. drinking gallons of water.
matt stayed all evening. having my boys here is like christmas.
they do everything i ask! ha!
eating lots of food like the dietitian told me to - so strange to eat so much.
worried i will never be size 4 again after chemo.
i love feeling thin.
water and more water until midnight.
wrote all my thanksgiving notes to mail next week.
two teddy bears and love notes to J and M.
my last bath with my breasts. candles.
i've been ready for this for so long, i didn't even cry.
i might love my flat chest. i don't know.
so many phone calls from friends today, and emails, and more gifts and cards. overwhelming gratitude.
i'm exhausted.
sleep.
Wednesday, November 19, 2008
11.19.08 - late night thoughts
10:30 p.m. usually i'm long asleep by now. staying up late, drinking as much water as i can, protein shakes too, preparing for surgery tomorrow. can't eat or drink anything past midnight.
matt came over and spent the entire evening with me and jimmy - we had dinner and watched videos. lots of laughing, taking photos. jimmy cooked a wonderful meal for me. in a bizarre way it feels like the night before christmas.
phone calls all day long from so many loving friends.
we'll be at the hospital at 10 in the morning. i'll get the isotope injection (thank you, xanax under the tongue) for the sentinel node biopsy at 11:30, will stay in pre-op with jimmy and matt rotating in one at a time while i wait for the isotope to go through my body, then surgery at 2:30. by 5:00 i am hoping my surgeon will be finished and will have talked to jimmy and matt. a couple of hours later, when i leave recovery, they should be able to see me in my room. jimmy has a list of 40 people to call right away, the first being my mother, who cries every time i call her. i haven't told her i have cancer yet. i told her a "spot" was found on my mammogram and i decided on double mastectomy just to be sure i never have to deal with this again. i'll tell her later about the cancer, only because it will be the only reason i can't travel and see her until summer at the earliest. she has dementia and will understand off and on. matt will email about 50 friends right away. i'm a lucky, loved person.
last night i dreamed that i was scaling the side of an apartment building. i kept falling but catching myself before i hit the ground. then i'd scale more of the building, fall again, keep going. over and over and over. i could see inside everyone's apartment. falling, going again.
today i had the most amazing experience. i was able to help a woman who has cancer. just like debbie and adriene have been helping me. she's 29 and we connected on the Crazy Sexy Cancer online board. she lives in reno quite near me. she had a lumpectomy and is facing chemo, radiation, and tamoxifen. i was able to tell her about bobbi, my cancer care coordinator, about sean, the dietitian, about our cancer support group, gave her names of oncologists that i know are the best in reno, and i was able to LISTEN to her. i could hear myself in her voice when i first found out i had cancer. so many questions, so many unknowns. i have had the benefit of a month and a half of hours and hours and hours and hours on the phone with adriene and debbie, and i have learned so much so quickly. it felt so incredibly good to help this young woman. when i am on my feet again, we're going to exercise together and get to know each other. it feels so good to help someone else.
so tonight i'll take my last bath with the body i have known for 54 years. and tomorrow morning, the last shower. i try to imagine how i will feel in the car on the way to the hospital; how i will feel when i get the isotope in my breast, knowing that breast will be gone in a matter of hours; how i will feel when they clean my breasts with the antiseptic before i receive the anesthesia. this feels surreal - like i'm writing about someone else.
nothing will ever be the same again in so many different ways. but i have this feeling that i'm about to discover an entirely different life that's going to be more fulfilling, more deliberative and spontaneous at the same time. i think i'm going to see the world with new eyes, and i can hardly wait to be able to grab my cameras and go on extended road trips.
i used to think i didn't have enough time for my photography. when i count up the hours i've spent dealing with this cancer - the tremendous amount of hours of reading, of writing, of talking to people on the phone, of time with the surgeons, with the radiologists, with the paperwork, hours on the phone with the insurance company - YES i had time for photography and so much more. i will never waste time again. even if i live only another year or two years, i'm going to make the most out of it. can hardly wait for my new holga cameras to arrive!
my sons and i will be so much closer in a deeper way because of this experience. already i can see new dimensions of them as they care for me, reassure me, make me laugh, protect me. i am so proud of them. my ex-husband and i did a wonderful job in raising these two fine men.
now it's almost 11 and i have to go to sleep. this is the night i've been wondering about for so long--what will it be like before i fall asleep? when i write in my journal? what will i dream? how will i feel when i wake up and look in the mirror?
can hardly believe i will be home again on friday...
whoever and wherever you are, thank you for reading my thoughts and being part of this with me.
matt came over and spent the entire evening with me and jimmy - we had dinner and watched videos. lots of laughing, taking photos. jimmy cooked a wonderful meal for me. in a bizarre way it feels like the night before christmas.
phone calls all day long from so many loving friends.
we'll be at the hospital at 10 in the morning. i'll get the isotope injection (thank you, xanax under the tongue) for the sentinel node biopsy at 11:30, will stay in pre-op with jimmy and matt rotating in one at a time while i wait for the isotope to go through my body, then surgery at 2:30. by 5:00 i am hoping my surgeon will be finished and will have talked to jimmy and matt. a couple of hours later, when i leave recovery, they should be able to see me in my room. jimmy has a list of 40 people to call right away, the first being my mother, who cries every time i call her. i haven't told her i have cancer yet. i told her a "spot" was found on my mammogram and i decided on double mastectomy just to be sure i never have to deal with this again. i'll tell her later about the cancer, only because it will be the only reason i can't travel and see her until summer at the earliest. she has dementia and will understand off and on. matt will email about 50 friends right away. i'm a lucky, loved person.
last night i dreamed that i was scaling the side of an apartment building. i kept falling but catching myself before i hit the ground. then i'd scale more of the building, fall again, keep going. over and over and over. i could see inside everyone's apartment. falling, going again.
today i had the most amazing experience. i was able to help a woman who has cancer. just like debbie and adriene have been helping me. she's 29 and we connected on the Crazy Sexy Cancer online board. she lives in reno quite near me. she had a lumpectomy and is facing chemo, radiation, and tamoxifen. i was able to tell her about bobbi, my cancer care coordinator, about sean, the dietitian, about our cancer support group, gave her names of oncologists that i know are the best in reno, and i was able to LISTEN to her. i could hear myself in her voice when i first found out i had cancer. so many questions, so many unknowns. i have had the benefit of a month and a half of hours and hours and hours and hours on the phone with adriene and debbie, and i have learned so much so quickly. it felt so incredibly good to help this young woman. when i am on my feet again, we're going to exercise together and get to know each other. it feels so good to help someone else.
so tonight i'll take my last bath with the body i have known for 54 years. and tomorrow morning, the last shower. i try to imagine how i will feel in the car on the way to the hospital; how i will feel when i get the isotope in my breast, knowing that breast will be gone in a matter of hours; how i will feel when they clean my breasts with the antiseptic before i receive the anesthesia. this feels surreal - like i'm writing about someone else.
nothing will ever be the same again in so many different ways. but i have this feeling that i'm about to discover an entirely different life that's going to be more fulfilling, more deliberative and spontaneous at the same time. i think i'm going to see the world with new eyes, and i can hardly wait to be able to grab my cameras and go on extended road trips.
i used to think i didn't have enough time for my photography. when i count up the hours i've spent dealing with this cancer - the tremendous amount of hours of reading, of writing, of talking to people on the phone, of time with the surgeons, with the radiologists, with the paperwork, hours on the phone with the insurance company - YES i had time for photography and so much more. i will never waste time again. even if i live only another year or two years, i'm going to make the most out of it. can hardly wait for my new holga cameras to arrive!
my sons and i will be so much closer in a deeper way because of this experience. already i can see new dimensions of them as they care for me, reassure me, make me laugh, protect me. i am so proud of them. my ex-husband and i did a wonderful job in raising these two fine men.
now it's almost 11 and i have to go to sleep. this is the night i've been wondering about for so long--what will it be like before i fall asleep? when i write in my journal? what will i dream? how will i feel when i wake up and look in the mirror?
can hardly believe i will be home again on friday...
whoever and wherever you are, thank you for reading my thoughts and being part of this with me.
11.19.08
finally tomorrow i will have a double mastectomy. it seems like years that i've been waiting for this day, with emotional ups and downs, but it was only october 3rd that the ultrasound confirmed a probable cancer. in that amount of time i have made more new friends and have had more support than i could have ever believed. everyone has helped me in so many ways, but two women on flickr have been my stalwart friends and confidants: adriene hughes and debbie buckner. i am so grateful to them for sharing every bit of their experience with breast cancer with me, the hours they have spent with me on the phone when we would laugh or i would cry, but mostly telling me what to expect and showing me by example how to experience cancer with grace, dignity, and a fighting spirit. i love them so much.
the surgery, including sentinel node biopsy, should last only 1.5 to 2 hours, because i am not having "reconstruction" (what an odd word). i should be home on friday. i'm not afraid at all anymore--at least not tonight. my sons are with me and i am in good, loving hands.
i never did buy breast cancer stamps. i always thought it was a travesty that this government treated breast cancer like a bake sale - relying on selling stamps, private foundations for the race for a cure, fundraising, etc., in order to fund attempts at a cure for such a common cancer. how can this change? now that i am a statistic of one of the ~183,000 women a year who are diagnosed with invasive breast cancer, i hope to make a difference by always reminding women to get their annual mammograms. this is what saved my life.
whether you're a man or woman, please read this.
[i just bought many sheets of these stamps! :)]
Tuesday, November 18, 2008
11.18.08 "i will be with you every step of the way"
today has been so busy and so surreal--time passing way too quickly.
the institute for cancer gives each patient their own dietitian to consult with before and after surgery, all during chemo and radiation. my dietitian is named sean, and he told me he wants me to eat as many high-calorie and high protein foods as possible before surgery. then he wants me to gain 7 pounds before chemo! i just lost 10 pounds on the raw foods diet and feel terrific, down to size 4 again! but now i have to gain weight. bizarre. he spent an hour and a half with me, telling me every single thing i need to eat and drink before surgery so that i will have a very good and quick recovery. he said, "i will be with you every step of the way through chemo and radiation. you will come through this just fine." i feel so lucky to be taken care of by such a great medical center, which makes this experience so much easier by providing a nurse navigator (bobbi gillis, who is just incredible), a dietitian, and i hear that i will be the recipient of a gift basket donated by a foundation - filled with the Crazy Sexy Cancer documentary, Susan Love's Breast Cancer Book, two cotton camis with pockets for the mastectomy drains, and lots of things Bobbi didn't want to tell me and spoil the surprise.
today i received so many gifts from friends and so many cards and emails. i am so grateful.
and my son james arrived this evening. now i know everything will be okay because i have both sons here with me.
the institute for cancer gives each patient their own dietitian to consult with before and after surgery, all during chemo and radiation. my dietitian is named sean, and he told me he wants me to eat as many high-calorie and high protein foods as possible before surgery. then he wants me to gain 7 pounds before chemo! i just lost 10 pounds on the raw foods diet and feel terrific, down to size 4 again! but now i have to gain weight. bizarre. he spent an hour and a half with me, telling me every single thing i need to eat and drink before surgery so that i will have a very good and quick recovery. he said, "i will be with you every step of the way through chemo and radiation. you will come through this just fine." i feel so lucky to be taken care of by such a great medical center, which makes this experience so much easier by providing a nurse navigator (bobbi gillis, who is just incredible), a dietitian, and i hear that i will be the recipient of a gift basket donated by a foundation - filled with the Crazy Sexy Cancer documentary, Susan Love's Breast Cancer Book, two cotton camis with pockets for the mastectomy drains, and lots of things Bobbi didn't want to tell me and spoil the surprise.
today i received so many gifts from friends and so many cards and emails. i am so grateful.
and my son james arrived this evening. now i know everything will be okay because i have both sons here with me.
Monday, November 17, 2008
11.17.08 - "we'll be hitting you hard with chemo"
my surgeon called me back tonight to answer a question i had about my EKG. she just happened to mention that today, three days before my double mastectomy, she just happened to realize that my pathology report given to her two weeks ago was wrong. i am not HER2+; i am HER2-, and this means i have a triple negative breast cancer (ER-, PR-, HER1-). if i had known this, i would have had my surgery moved up by two weeks. triple negative cancer cannot be treated with any kind of therapy besides chemo. triple negative cancer is very aggressive and can have higher rates of recurrence and metastasis. she said, "i'm sorry to give you the bad news. we'll be hitting you hard with chemo."
i am stunned. this is SCIENCE. how does a pathology report sit on someone's desk for two weeks and suddenly be a different report than it was two weeks ago? and why wasn't i called earlier? would she even have mentioned this to me if i hadn't asked about my EKG?
three days before surgery and now i am facing the fact that i'm triple negative. this feels so wrong.
info on triple negative breast cancer:
http://www.dslrf.org/breastcancer/content.asp?L2=6&L3=5&SID=381
tomorrow my oldest son will arrive from los angeles and all of this will become very real. my two sons and i will go to the bank on wednesday to sign all the Power of Attorney papers and access to my safety deposit box. we'll spend the day together and take lots of photos.
i feel like i'm at the top of a slide on a playground and about to let go and fly down the slide, super fast, and not be able to stop until i hit ground. what will that ground be like?
i am stunned. this is SCIENCE. how does a pathology report sit on someone's desk for two weeks and suddenly be a different report than it was two weeks ago? and why wasn't i called earlier? would she even have mentioned this to me if i hadn't asked about my EKG?
three days before surgery and now i am facing the fact that i'm triple negative. this feels so wrong.
info on triple negative breast cancer:
http://www.dslrf.org/breastcancer/content.asp?L2=6&L3=5&SID=381
tomorrow my oldest son will arrive from los angeles and all of this will become very real. my two sons and i will go to the bank on wednesday to sign all the Power of Attorney papers and access to my safety deposit box. we'll spend the day together and take lots of photos.
i feel like i'm at the top of a slide on a playground and about to let go and fly down the slide, super fast, and not be able to stop until i hit ground. what will that ground be like?
Sunday, November 16, 2008
11.16.08 - memorizing my body
since i was a little kid i've loved baths before bed. and in my older years, what is nicer than a bath with a lover.
five more nights before my surgery. that means only four more baths with the body i've known all my life.
i've been memorizing. i'm ready for this and i'm not afraid today.
11.15.08 - thank you to my surfer friends
one morning two years ago i saw these surfers in the water outside my window in pacifica. i went down to the beach with my XT and 100-400mm and started photographing them. after surfing, kevin (in the middle) came up to me with a big smile, and that began a friendship that has become one of the most important in my life. i became their "personal photographer" for the next two years. kevin and i keep in touch on the phone almost every week, and i have a deep love for him.
last week these incredible friends surprised me with an extremely generous gift certificate to amazon.com. what i wish i could buy with it is a trip to the past, where i'm on the beach again and they're in the water riding great waves, and then we go out for coffee at lucca's again!
thank you for your love and care, kevin and matt and sean and conor and all of the group. i love you. xoxox
Saturday, November 15, 2008
11.15.08 - hats for chemo head!
my wonderful friend sharon surprised me this morning when we met downtown at the river for coffee. she had a big bag full of hats for me to wear after she shaves my head before chemo next month, and a hand-crocheted, gorgeous wraparound scarf for winter. also soft hats to sleep in during naps during chemo and herceptin sessions and at night in the winter.
how do you thank someone who is so loving, so thoughtful, so generous? i've only known her for three months, and she has stepped into my life and changed it in the most remarkable and lasting ways. i can only hope to be as nice to her and to others as she has been to me.
thank you, sharon. much love. xoxo
Friday, November 14, 2008
11.14.08 - pre-admission, bloodwork, EKG, chest x-ray
8 a.m., the only person in the admitting waiting room. paperwork, signatures. everyone wearing the pink breast cancer pin. instructions. my sons can take turns, one at a time staying with me in pre-op, the three hours i have to wait for the isotope to make its way through my body for the sentinel node biopsy before then going to surgery. jimmy gives incredible back rubs. i might ask him for one. before the isotope injection, i'll take a xanax - i'm very afraid of what i hear about that injection in the breast, right next to the chest wall, and my surgeon said i can't be numbed beforehand. hoo boy. my nurse navigator, bobbi gillis, said she will be with me during the injection if allowed. our family will be assigned a "guest relations representative" who will call my sons and tell him when surgery is over and when they can come to my room. my surgeon will talk to them right after surgery.
then bloodwork. i have no good veins in my left arm and can't have any blood taken from my right arm before or after surgery, so they took the blood with a butterfly needle in my left hand. i felt nothing. 6cc's of blood. i couldn't look.
then EKG. took 5 minutes. i was given a copy of the results.
then chest x-ray. didn't have to take off my sweater. it took another 5 minutes. i saw the x-ray and the technician explained to me everything i was seeing. they'll give me a copy the day of surgery.
and i was done. no pain and only about 15 minutes for labwork.
so many people walking around in the cancer institute, in and out of elevators, mostly people who work there, walking with a sense of purpose.
it shocks me that not everybody has cancer.
it felt so good to go outside into the morning air and bright sunshine and to be free as a bird.
hard to imagine that one week from today, i will be back home in my own bed!
6 more days
then bloodwork. i have no good veins in my left arm and can't have any blood taken from my right arm before or after surgery, so they took the blood with a butterfly needle in my left hand. i felt nothing. 6cc's of blood. i couldn't look.
then EKG. took 5 minutes. i was given a copy of the results.
then chest x-ray. didn't have to take off my sweater. it took another 5 minutes. i saw the x-ray and the technician explained to me everything i was seeing. they'll give me a copy the day of surgery.
and i was done. no pain and only about 15 minutes for labwork.
so many people walking around in the cancer institute, in and out of elevators, mostly people who work there, walking with a sense of purpose.
it shocks me that not everybody has cancer.
it felt so good to go outside into the morning air and bright sunshine and to be free as a bird.
hard to imagine that one week from today, i will be back home in my own bed!
6 more days
Thursday, November 13, 2008
11.13.08 - one week before surgery
7 more days
this time next week at exactly the time i'm writing this, i will be about 45 minutes into surgery. it will be the first time in my sons' lives that i have ever been in the hospital or ever been under anesthesia. i'm so used to being there for them, available every second, able to be with them at any time. now they are grown men. they will be waiting for me after surgery and will care for me. i'm so proud of them. and i need them so much right now.
today i went to a different cancer support group, but i walked in and walked right out. someone was reeking of cigarette smoke and someone else was coughing.
it's interesting how many people are standing around outside the medical center and the cancer institute - smoking. shocking, really. here, have a puff of cancer!
matt and i had pho today. it's sunny and warm, summery! i'm going for a run. as much as i do not want to go through surgery and treatment, i am REALLY looking forward to running without a sports bra! my son said i will be an incredibly aerodynamic runner when i'm breastless and bald. ha!
this time next week at exactly the time i'm writing this, i will be about 45 minutes into surgery. it will be the first time in my sons' lives that i have ever been in the hospital or ever been under anesthesia. i'm so used to being there for them, available every second, able to be with them at any time. now they are grown men. they will be waiting for me after surgery and will care for me. i'm so proud of them. and i need them so much right now.
today i went to a different cancer support group, but i walked in and walked right out. someone was reeking of cigarette smoke and someone else was coughing.
it's interesting how many people are standing around outside the medical center and the cancer institute - smoking. shocking, really. here, have a puff of cancer!
matt and i had pho today. it's sunny and warm, summery! i'm going for a run. as much as i do not want to go through surgery and treatment, i am REALLY looking forward to running without a sports bra! my son said i will be an incredibly aerodynamic runner when i'm breastless and bald. ha!
Wednesday, November 12, 2008
11.12.08 - big fat joy
nevada sky this evening on my way to my first cancer support group at renown medical center. six of us around a table for an hour and a half, talking about things i never even dreamed of even a month ago. every new face, every new friend i make from now on during my cancer experience is a surprise - people i never would have met otherwise. and such amazing people - with such huge hearts, who don't beat around the bush, who have learned to grab life and shake it, who have experienced pain and sadness and also big fat joy! i want to be like them. we'll meet every two weeks, maybe for years.
i'm still completely amazed by renown medical center. they have a department for cancer patients where you can pick out hats, scarves, wigs, books - all for free. and i still can't get over all the free parking. kaiser in san francisco makes you pay for parking! that's sinful. there is a spirit of generosity and compassion in reno that wraps around you like a cozy blanket. i'm so grateful to live here.
Tuesday, November 11, 2008
11/12/08 - sending a teddy to my mom
now that my mom knows i am going to have surgery, i call her every morning to see how she's feeling, to listen for any sound of worry in her voice. today she asked me what she could do for me, and i said if she could walk every day for thirty minutes, i would be overjoyed. she's supposed to walk every day, but hasn't for years, and she has suffered in major ways because of that. she said she would do that and even try the stationary bicycle at her retirement community fitness room. this is huge! my mom, exercising!
when we say goodbye, i can hear the worry in her voice. she lives in dallas, she's 80, and it's just so unbearably sad to me that i won't be able to see her until all my chemo and radiation and herceptin treatments are over, which could up to 17 months. she's facing some serious health problems with her lungs (she smoked for over 50 years, quit 7 years ago) and her dementia. i hate losing my freedom to travel for so long, especially to see her when she will need me.
so today i sent this teddy bear to my mom, with a note saying "mom, when you need a hug from me, hug this teddy bear." i love thinking about her face when she opens up the box and sees the bear looking up at her!
Monday, November 10, 2008
11.10.08 - blow-drying my long hair for the last time
in half an hour, sharon will be here. we'll have an early thai dinner, then she's going to cut my hair.
this morning i washed my long hair SLOWLY and tried to memorize. blow-drying my hair was more emotional than i ever expected. i couldn't stop crying. i am more attached to my hair than i am to my breasts. an ex-girlfriend told me i had a relationship with my hair. ha! she was right. i know it will grow back, but it's going to take a very, very long time to have it this way again, and i have heard that after chemo, hair grows back in surprising ways. straight hair comes back curly, etc. i might like having short hair. i might like having a bald head. many women keep their head bald after chemo. i know it can be a good experience later. but this morning it was not a good experience. one more thing that has to change. one more thing that i have to let go of. one more way i will look unfamiliar in the mirror to myself and to my friends and family. and i know it's a temporary precursor to sharon shaving my head before chemo. it's all happening so fast. it was only 37 days ago that i found out i had a spot in my breast.
one of my friends told me today how lucky i will be to save on shampoo and haircuts. that made me laugh. it's true!
i spent part of today with matt, helped him prepare a chicken to roast. i'm so proud of him - he quit smoking weeks ago, he's started running, he's eating tons and tons of vegetables, making protein smoothies with whey protein and flax and fruit and yogurt, drinking lots of organic tea every day. i laugh a lot when i'm with him - he is definitely my healer. i'm looking forward to jimmy arriving on the 18th to stay for a week.
and four of my friends who have never had mammograms, who are in their forties and fifties, have made appointments because of my cancer shindig. this makes me so happy.
i guess because of my hair, i was in a pissy mood today. at the grocery store when the cashier said, "and how is your day?" i wanted to slap her silly. :)
15 more minutes and sharon will be here. i have butterflies in my stomach.
this morning i washed my long hair SLOWLY and tried to memorize. blow-drying my hair was more emotional than i ever expected. i couldn't stop crying. i am more attached to my hair than i am to my breasts. an ex-girlfriend told me i had a relationship with my hair. ha! she was right. i know it will grow back, but it's going to take a very, very long time to have it this way again, and i have heard that after chemo, hair grows back in surprising ways. straight hair comes back curly, etc. i might like having short hair. i might like having a bald head. many women keep their head bald after chemo. i know it can be a good experience later. but this morning it was not a good experience. one more thing that has to change. one more thing that i have to let go of. one more way i will look unfamiliar in the mirror to myself and to my friends and family. and i know it's a temporary precursor to sharon shaving my head before chemo. it's all happening so fast. it was only 37 days ago that i found out i had a spot in my breast.
one of my friends told me today how lucky i will be to save on shampoo and haircuts. that made me laugh. it's true!
i spent part of today with matt, helped him prepare a chicken to roast. i'm so proud of him - he quit smoking weeks ago, he's started running, he's eating tons and tons of vegetables, making protein smoothies with whey protein and flax and fruit and yogurt, drinking lots of organic tea every day. i laugh a lot when i'm with him - he is definitely my healer. i'm looking forward to jimmy arriving on the 18th to stay for a week.
and four of my friends who have never had mammograms, who are in their forties and fifties, have made appointments because of my cancer shindig. this makes me so happy.
i guess because of my hair, i was in a pissy mood today. at the grocery store when the cashier said, "and how is your day?" i wanted to slap her silly. :)
15 more minutes and sharon will be here. i have butterflies in my stomach.
Sunday, November 9, 2008
11.9.08 - cancer care coordinator
how amazing is medical care support in reno? thanks to my friend barbara nowak, who works at renown medical center as director of volunteers, who told me about bobbi gillis, i now have a cancer care coordinator. bobbi has been my anchor in just a short amount of time. she told me she's here for me in any way - i can ask questions, vent, cry, share happiness, ask for help with scheduling or names of the best oncologists, ask important questions like will i be given the camisole for the drains after mastectomy or should i buy those. or when will i receive the prescriptions for pain meds. anything. just anything, and only a phone call away. she had a lumpectomy and radiation ten years ago and now is a resource for any patient with cancer. i feel surrounded by so many loving people - even people i haven't even met in person yet, like bobbi. i love living here.
i'm supposed to go in for pre-admission paperwork and bloodwork at least ten days before surgery. when i was told that, it seemed a long way away. now it's just tomorrow.
11.9.08 - preparing my mom
a monumental weight is off my shoulders. my mom is 80 and lives in dallas, has dementia, and lives with her wonderful companion, wally. i've been so afraid to tell her about my situation, didn't want to upset her, confuse her, make her life more difficult than it already is. and she is facing very difficult health problems of her own. but i knew i had to tell her something, especially when i will have to explain why i can't visit her while i'm having chemo and radiation. so tonight i told her that a mammogram revealed a very tiny spot and that i have decided to have a double mastectomy so that i don't have to worry about cancer in the future. i didn't tell her it's definitely cancer, and i won't until after surgery. she cried, said she wanted to be with me during surgery, but i told her that surgery only lasts two and a half hours and i'll be home the next day, which is true. she was relieved. she asked me if my boys would be with me. of course. i told her how things have improved so much with cancer surgery and recovery and chemo. she seemed to accept that, and said, "i trust your decision." i talked to wally and explained it all to him, and he said, "i think you should do it." so i'm relieved that she's somewhat prepared for what's coming. i had not planned to tell her until art and scott bond changed my mind. i thank them.
she depends on me to pay her bills, talk to her physicians, order her medications. i don't want her to worry that i will abandon her. my sweet little mother.
she depends on me to pay her bills, talk to her physicians, order her medications. i don't want her to worry that i will abandon her. my sweet little mother.
11.9.08 - cutting my hair and taking a break
my dear, dear friend michelle graf calls me every single day. "this is your checkup call," she says. i don't even have to think about how i feel when she asks me. it just pours out. sometimes happy. sometimes sobbing. sometimes entirely angry. she makes me feel safe. how incredible is she - she even offered to fly to dallas to take care of my mother since i can't travel.
this morning i decided i need to cut my hair before surgery because i won't be able to shower or move my arms much after the mastectomy, not until the drains are removed. then a few hours later, i got an email from sharon, who offered to cut my hair before surgery and shave my head before chemo!! i met her right after i moved to reno and already she is one of my dearest friends. she's a licensed hairdresser and also teacher - teaches at-risk kids in the high school. one of the sweetest and women i know, drives a very cute sports car, calls herself a crazy grandma. she's so generous.
so - here comes the first step. cutting my hair.
will i recognize myself a year from now?
so odd to feel so out of control and so dependent on everyone, not only friends and family, but even down to the anesthesiologist, a complete stranger. facing so many unknowns, so afraid of pain and being out of it, losing all connection to everyone on a daily basis because i have to focus inward on surviving this. how can i not tell my mother about this? worried about her dementia and her own health problems.
decided to stop emailing friends like i have been. want to have the next 11 days spread out before me with nothing to do but be with family and friends in reno, laugh a lot, exercise, eat organic food, drink my protein/flax/blueberry/yogurt smoothies, take photos, rock in my rocking chair in the sun, write in my boys' books and in my journal, take portraits of my body, and slowly say goodbye to what has been familiar for the last 54 years - not just my breasts and hair, but everything.
i'm taking a break from reading about cancer. i've checked out probably 70 books from the library in the last month, which has been so wonderful and so empowering, learning so much so quickly. i'll have a month after surgery to bone up on chemo and radiation and herceptin info. and talking with adriene and debbie - my life savers.
ordered the complete set of calvin & hobbes books from the library!! memories of when jimmy and matt were little boys. who knew these books would eventually help me?
this morning i decided i need to cut my hair before surgery because i won't be able to shower or move my arms much after the mastectomy, not until the drains are removed. then a few hours later, i got an email from sharon, who offered to cut my hair before surgery and shave my head before chemo!! i met her right after i moved to reno and already she is one of my dearest friends. she's a licensed hairdresser and also teacher - teaches at-risk kids in the high school. one of the sweetest and women i know, drives a very cute sports car, calls herself a crazy grandma. she's so generous.
so - here comes the first step. cutting my hair.
will i recognize myself a year from now?
so odd to feel so out of control and so dependent on everyone, not only friends and family, but even down to the anesthesiologist, a complete stranger. facing so many unknowns, so afraid of pain and being out of it, losing all connection to everyone on a daily basis because i have to focus inward on surviving this. how can i not tell my mother about this? worried about her dementia and her own health problems.
decided to stop emailing friends like i have been. want to have the next 11 days spread out before me with nothing to do but be with family and friends in reno, laugh a lot, exercise, eat organic food, drink my protein/flax/blueberry/yogurt smoothies, take photos, rock in my rocking chair in the sun, write in my boys' books and in my journal, take portraits of my body, and slowly say goodbye to what has been familiar for the last 54 years - not just my breasts and hair, but everything.
i'm taking a break from reading about cancer. i've checked out probably 70 books from the library in the last month, which has been so wonderful and so empowering, learning so much so quickly. i'll have a month after surgery to bone up on chemo and radiation and herceptin info. and talking with adriene and debbie - my life savers.
ordered the complete set of calvin & hobbes books from the library!! memories of when jimmy and matt were little boys. who knew these books would eventually help me?
Saturday, November 8, 2008
11.8.08 - preparation
spent the day shopping for after-surgery clothes. button-down everything. extra pillows. beautiful flannel sheets for jimmy in the guest room.
i'm telling every woman to get a mammogram, even the macy's saleswoman. even the credit card rep when i ordered cards for jimmy and matt and molly so they don't have to spend any of their own money on my cancer shindig. i'm now one of "those breast cancer women." so far still avoiding pink clothes, pink anything. i don't need the reminder.
still have a long list of things to get for the days of chemo and radiation. have to get it all now while i can still drive. matt says if i ever feel bad i can stay with them and "we'll watch movies all day."
if i didn't have my boys and love them so dearly, i wouldn't get any treatment. i really wouldn't. i started to feel pissy about this, actually. one more thing to do to be a good mother. damn it! :)
i'm telling every woman to get a mammogram, even the macy's saleswoman. even the credit card rep when i ordered cards for jimmy and matt and molly so they don't have to spend any of their own money on my cancer shindig. i'm now one of "those breast cancer women." so far still avoiding pink clothes, pink anything. i don't need the reminder.
still have a long list of things to get for the days of chemo and radiation. have to get it all now while i can still drive. matt says if i ever feel bad i can stay with them and "we'll watch movies all day."
if i didn't have my boys and love them so dearly, i wouldn't get any treatment. i really wouldn't. i started to feel pissy about this, actually. one more thing to do to be a good mother. damn it! :)
Friday, November 7, 2008
11.7.08 - in a cocoon
i feel like i'm in a cocoon right now and it's going to EXPLODE. surgery, recovery, pain, meds, dr. visits, parking lots, offices, nurses, needles, poison, feeling things i can't even imagine yet, for OVER A YEAR. isolation, winter, just everything. and not able to fly to dallas to see mom.
eternally grateful to live down the street from matt and molly, and that jimmy can fly here anytime, that i have an extended family and nearby friends. overwhelmed by all the emails from people on flickr, from all the phone calls from friends, the cards.
reading edward weston's Daybooks. his joy in life, his amazing photography, and his parkinson's. his graceful departure.
eternally grateful to live down the street from matt and molly, and that jimmy can fly here anytime, that i have an extended family and nearby friends. overwhelmed by all the emails from people on flickr, from all the phone calls from friends, the cards.
reading edward weston's Daybooks. his joy in life, his amazing photography, and his parkinson's. his graceful departure.
11.7.08 - two weeks to be myself
lots of tears this morning. i have TWO WEEKS LEFT to be myself and feel good and have no pain, no schedules, no drains - to have my body intact and be able to do whatever i want, whenever i want, and feel normal.
after surgery i will never be the same again, never wake up and feel like myself, feel familiar, to be able to take a shower and make coffee and do exercises and live life the way i do now. i can't believe how the entire way i look will change in two weeks and then during chemo. losing all my long hair. i can't fathom all this.
my tumor is hurting so much since chu manipulated it. i have headaches in the middle of the night and of course i think it's a friggin' brain tumor.
it's completely surreal - everything i know about myself and how i feel in my body is going to be over in only 13 days.
after surgery i will never be the same again, never wake up and feel like myself, feel familiar, to be able to take a shower and make coffee and do exercises and live life the way i do now. i can't believe how the entire way i look will change in two weeks and then during chemo. losing all my long hair. i can't fathom all this.
my tumor is hurting so much since chu manipulated it. i have headaches in the middle of the night and of course i think it's a friggin' brain tumor.
it's completely surreal - everything i know about myself and how i feel in my body is going to be over in only 13 days.
Thursday, November 6, 2008
11.6.08 - from the mouth of babes
matt wrote to me:
"The easiest way to recover, or any goal really, is to get a main overall goal, like climbing in the andes or recovering from cancer. then you break it down into smaller, more manageable steps with milestones you can physically and mentally make, and over time you meet the smaller goals of the larger main goal, and all of a sudden you're there.
"So, to beat cancer, what is your main goal, something you haven't done before or is life-affirming, something bigger than you've ever done that can overshadow stupid cancer treatments, something that is difficult but affirming and will make cancer the small step? you are capable of things so much more difficult, much more life-changing than some radiation and vomiting and tiredness. look at lance armstrong. look at the thousands of people who have come back from cancer even stronger than they were before. use cancer as a catalyst for something greater.
"Grab those things that scare you and shake them, tell them they can NEVER hurt you, and you destroy them in your mind. you overcome them. you will destroy cancer. DESTROY IT. only through the greatest suffering and hardship has humanity ever gained the greatest and best achievements. it's simple. you just have to reach so far inside yourself and find out that nothing can hurt you."
this from the baby i had 28 years ago. now he's my teacher.
i've never even had the flu before. never been in a hospital except to have my boys. never been sick. this is all so overwhelming.
"The easiest way to recover, or any goal really, is to get a main overall goal, like climbing in the andes or recovering from cancer. then you break it down into smaller, more manageable steps with milestones you can physically and mentally make, and over time you meet the smaller goals of the larger main goal, and all of a sudden you're there.
"So, to beat cancer, what is your main goal, something you haven't done before or is life-affirming, something bigger than you've ever done that can overshadow stupid cancer treatments, something that is difficult but affirming and will make cancer the small step? you are capable of things so much more difficult, much more life-changing than some radiation and vomiting and tiredness. look at lance armstrong. look at the thousands of people who have come back from cancer even stronger than they were before. use cancer as a catalyst for something greater.
"Grab those things that scare you and shake them, tell them they can NEVER hurt you, and you destroy them in your mind. you overcome them. you will destroy cancer. DESTROY IT. only through the greatest suffering and hardship has humanity ever gained the greatest and best achievements. it's simple. you just have to reach so far inside yourself and find out that nothing can hurt you."
this from the baby i had 28 years ago. now he's my teacher.
i've never even had the flu before. never been in a hospital except to have my boys. never been sick. this is all so overwhelming.
11.6.08 - meeting Dr. Michelle Chu for the first time
shock. anger. fear.
met with Chu. i like her very, very much. results came back of HER2+. Grade 3 tumor. aggressive. have to have double mastectomy, chemo and radiation and herceptin.
walked to matt's, he walked back to my place with me. taking pictures. he's my healer.
met with Chu. i like her very, very much. results came back of HER2+. Grade 3 tumor. aggressive. have to have double mastectomy, chemo and radiation and herceptin.
walked to matt's, he walked back to my place with me. taking pictures. he's my healer.
Monday, November 3, 2008
11.3.08 - OBAMA
OBAMA! finally there is hope again in this country.
fuck you, george bush, and everyone in your rancid administration. good riddance.
fuck you, george bush, and everyone in your rancid administration. good riddance.
Sunday, November 2, 2008
11.2.08 - my friends and their amazing gifts
kevin and my surfer buddies - amazing surprise. gift certficate to amazon. !!!! i cried. such love for those men.
a huge box of tulips from ryan and rachel. my favorite flowers! i love them.
lots and lots of emails with deb o'leary. she makes me laugh. what a gift.
i just don't feel so scared anymore. art's translation of the biopsy and his medical advice is getting me through this with a sense of security.
a huge box of tulips from ryan and rachel. my favorite flowers! i love them.
lots and lots of emails with deb o'leary. she makes me laugh. what a gift.
i just don't feel so scared anymore. art's translation of the biopsy and his medical advice is getting me through this with a sense of security.
Saturday, November 1, 2008
11.1.08 - stranger than fiction
will i have breasts in 19 days?
RAIN! i love my fireplace. i love my home.
"movie day" at matt's and molly's. popcorn and tea. "Stranger Than Fiction," thanks to myla. wow. all i can say is "wow." a perfect time in my life to see this movie.
RAIN! i love my fireplace. i love my home.
"movie day" at matt's and molly's. popcorn and tea. "Stranger Than Fiction," thanks to myla. wow. all i can say is "wow." a perfect time in my life to see this movie.
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