2012 - Words that worked their way into my personal lexicon this year -
biopsy
infiltrating ductal carcinoma
stage 3
triple negative
axillary lymph node dissection
chemotherapy - AC and taxol
radiation
mastectomy
BRCA
donor milk
my daughter
Words I knew before but had to relearn-
friends
family
neighbors
help
kindness
prayer
visualization
acceptance
accepting
support
relax
breathe
On this last day of the year I throw up a prayer and wish for all of us, that this coming year is full of possibilities, victories, adventures, joys, love, and health. Let's put a close to 2012.
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Monday, December 31, 2012
Monday, December 24, 2012
Merry Merry.
A very Merry Christmas from my family to yours. Wishing you every peace, blessing and goodness tomorrow can bring.
Tuesday, December 18, 2012
Two months.
It's such a "beautiful to me" day today - overcast, raining off and on, steel gray clouds the color of Jack's eyes when he was a baby. It could be 10 degrees colder, hell, it could be snowing, but I will take what I can get. The tree in my front yard is still a firestorm of colors - the leaves change from the outside in, to orange, gold, red. Who says we don't have any changing colors in Southern California? There is so much to do, so much to see, so much to experience. I feel like running into next year.
It so broke my heart that one of the first little ones to be buried was named Jack. I can only send up prayers for peace and healing for their familes, hoping Mary doesn't get tired of my relentless communications this year as she has been my chosen conduit, for I know the children are ok. These children, who were cheated out of their life here, will be forever who we aren't, they will be innocent and pure and good.
Saturday, December 15, 2012
Crunchy leaves.
I was a nerd. Not like a nerdy-nerd, but I loved school. I'm referring to elementary school mostly - high school and I weren't really friends. But I can still feel what it felt like to look forward to "new" every year, new backpack and lunchbox, new pencils, new things to learn, new pages to unfold. New came in September, not in January like it does for the adult world. And after the unbearably hot late summer that Southern California always suffers passed, the brisk, bright leaf-filled days of fall would come, Halloween songs would be sung, Thanksgiving hand-print turkeys made, and finally cotton-ball Santas would be produced. I still remember the feeling of leaves crunching under my feet, fall art projects in my backpack, school bake sales taking place. I feel bright and happy, full of life....and safe.
I don't know what to do with what happened yesterday. Honestly, tragic news happenings happen everyday and they don't usually affect me. I'm honestly not the most sympathetic person in the world, it's just how I am. It's not desensitization, it's just that I know shitty things happen to people all the time. But this, this hit me. Ever since I got pregnant with Jack, the one thing I have most looked forward to is him starting school. It keeps me going these days, knowing how badly I want to see him on his first day, experience the things that he will learn, new discoveries. I want him to have bake sales, friends, songs, phonics, spelling, new backpacks and lunchboxes, proliferating art projects. I want him to be safe.
I can't say where I stand. I grew up in a family of hunters, I'm two generations removed from a farming family. I grew up with guns in the house, and God-forbid, they were kept in unlocked closets and dresser drawers that I can't remember ever not knowing about. I just always knew never to touch them. My husband and I were both in the military, schooled in weaponry, we do keep guns in the house, however they are in a locked safe. We both enjoy shooting as a hobby and as a means of protection. We are both safe, legal weapon owners. Would I give up my guns to bring back those kids or to keep Jack and Amelia safe forever? Dear God, in a heartbeat. I am so very sad. I'm trying so hard to keep myself alive, it never dawned on me I would have to think about keeping my babies alive doing something so ordinary. They deserve to have crunchy leaf memories.
I don't know what to do with what happened yesterday. Honestly, tragic news happenings happen everyday and they don't usually affect me. I'm honestly not the most sympathetic person in the world, it's just how I am. It's not desensitization, it's just that I know shitty things happen to people all the time. But this, this hit me. Ever since I got pregnant with Jack, the one thing I have most looked forward to is him starting school. It keeps me going these days, knowing how badly I want to see him on his first day, experience the things that he will learn, new discoveries. I want him to have bake sales, friends, songs, phonics, spelling, new backpacks and lunchboxes, proliferating art projects. I want him to be safe.
I can't say where I stand. I grew up in a family of hunters, I'm two generations removed from a farming family. I grew up with guns in the house, and God-forbid, they were kept in unlocked closets and dresser drawers that I can't remember ever not knowing about. I just always knew never to touch them. My husband and I were both in the military, schooled in weaponry, we do keep guns in the house, however they are in a locked safe. We both enjoy shooting as a hobby and as a means of protection. We are both safe, legal weapon owners. Would I give up my guns to bring back those kids or to keep Jack and Amelia safe forever? Dear God, in a heartbeat. I am so very sad. I'm trying so hard to keep myself alive, it never dawned on me I would have to think about keeping my babies alive doing something so ordinary. They deserve to have crunchy leaf memories.
Thursday, December 6, 2012
Et tu, Taxol?
Well, Jack erased the whole post I had, then the baby woke back up so let's see if I can retype this
one-handed. Second Taxol treatment in, ten more to go. Taxol was supposed to be easier than AC but since I didn't have any side effects from the AC maybe I'm not the best example of comparisons. I had my second reaction yesterday - about 5 minutes after the Taxol starts I get bright red, intense hot flash, blood pressure goes up, I feel light headed, and yesterday, I got the lower back pain they talk about (apparently that's from your adrenal glands trying to shoot out adrenaline). So they stop the medicine, gave me more steroids, waited for my bp to stabilize, and then started it again reallllly slowly. After reading on the internet, it seems reactions like this are not that uncommon, and some are way worse. There is another medicine, same as Taxol, called Abraxane, that is "wrapped" (preserved) differently and therefore, does not produce these reactions in people. However, it is super super expensive so Dr's don't use it unless people have severe or constant reactions to Taxol. Ahhhh, big medicine, I love you.
I know I have 10 more treatments to go (Feb. 13th, I'm stalking you) I'm hoping my side effects stay minimal. I know with Taxol they tend to show up as time goes on and the drug is in you more cumulatively, but here's hoping. Last night I was pretty wiped out and tired, but today I seem to be okay.
I know I get many thoughts and prayers from people who read this...can you keep Martha in your prayers too? We found each other on the internet after I was diagnosed, I think through Babyrabies maybe. She is almost on the same timeline I am, I think she was diagnosed a month before me when she was 32 weeks pregnant, but her protocal has been a bit different. She had a lumpectomy last week and they found more tumor than they thought was supposed to be there per her last MRI, so she went in for a mastectomy and lymph node removal yesterday too. Kind of a surprise after you think something is not there, so harder to process I think. Thanks!
one-handed. Second Taxol treatment in, ten more to go. Taxol was supposed to be easier than AC but since I didn't have any side effects from the AC maybe I'm not the best example of comparisons. I had my second reaction yesterday - about 5 minutes after the Taxol starts I get bright red, intense hot flash, blood pressure goes up, I feel light headed, and yesterday, I got the lower back pain they talk about (apparently that's from your adrenal glands trying to shoot out adrenaline). So they stop the medicine, gave me more steroids, waited for my bp to stabilize, and then started it again reallllly slowly. After reading on the internet, it seems reactions like this are not that uncommon, and some are way worse. There is another medicine, same as Taxol, called Abraxane, that is "wrapped" (preserved) differently and therefore, does not produce these reactions in people. However, it is super super expensive so Dr's don't use it unless people have severe or constant reactions to Taxol. Ahhhh, big medicine, I love you.
I know I have 10 more treatments to go (Feb. 13th, I'm stalking you) I'm hoping my side effects stay minimal. I know with Taxol they tend to show up as time goes on and the drug is in you more cumulatively, but here's hoping. Last night I was pretty wiped out and tired, but today I seem to be okay.
I know I get many thoughts and prayers from people who read this...can you keep Martha in your prayers too? We found each other on the internet after I was diagnosed, I think through Babyrabies maybe. She is almost on the same timeline I am, I think she was diagnosed a month before me when she was 32 weeks pregnant, but her protocal has been a bit different. She had a lumpectomy last week and they found more tumor than they thought was supposed to be there per her last MRI, so she went in for a mastectomy and lymph node removal yesterday too. Kind of a surprise after you think something is not there, so harder to process I think. Thanks!
Monday, December 3, 2012
I'm not superwoman.
Holy goodness - let me just say I do not recommend sitting in a car for over 6 hours and trying to make it through a 12 hour day less then 3 weeks out of this surgery. We had a family funeral on Friday, about 160 miles away from where I live. Luckily I was able to ride with my cousin, because physically I could not have driven that far. But just the sensation of clothes on skin, being jostled for 12 hours, caused a huge nerve pain flare-up that took me all weekend to recover from. I'm so glad I was able to go and see family I hadn't seen in years, and have them see me and see I was alive and kicking, but goodness, did I pay for it.
I've had many people, after hearing the story or asking how I am, say wow, you're a superwoman. No, I'm not. I'm just trying to slog through this like anyone else would if they were faced with it. I'm just counting the weeks down, trying to see the light at the end. I am relying on the help of family and friends and strangers too much to be a superwoman. I do it because I have to, because that's what you do in life, you go forward, you get through. Did I seem to get a heaping spoonful of crap all at once? Sure. Am I tired all the time because I have an infant and a 2.5 year old? Yes, for certain. Am I in pain? Affirmative. Do I most probably have a harder time of this then say a retired grandmother who gets to recover while watching "The Price is Right" (please do not take offense retired grandmothers)? Yes, I do. But a single mother fighting cancer who works and has no health insurance and has to provide for her kids has it harder than me, she's a superwoman to me. I guess it's all what side of the fence you are on, but I, like everyone else, am just trying to make it through, because there's no other option. Well, I guess there is another option, just not a fathomable one. I'm not a superwoman, I'm just a woman, putting one foot in front of the other everyday - sometimes just closing my eyes and hoping today falls into next week then rolls into next month and praying next year appears before me in a better light.
I've had many people, after hearing the story or asking how I am, say wow, you're a superwoman. No, I'm not. I'm just trying to slog through this like anyone else would if they were faced with it. I'm just counting the weeks down, trying to see the light at the end. I am relying on the help of family and friends and strangers too much to be a superwoman. I do it because I have to, because that's what you do in life, you go forward, you get through. Did I seem to get a heaping spoonful of crap all at once? Sure. Am I tired all the time because I have an infant and a 2.5 year old? Yes, for certain. Am I in pain? Affirmative. Do I most probably have a harder time of this then say a retired grandmother who gets to recover while watching "The Price is Right" (please do not take offense retired grandmothers)? Yes, I do. But a single mother fighting cancer who works and has no health insurance and has to provide for her kids has it harder than me, she's a superwoman to me. I guess it's all what side of the fence you are on, but I, like everyone else, am just trying to make it through, because there's no other option. Well, I guess there is another option, just not a fathomable one. I'm not a superwoman, I'm just a woman, putting one foot in front of the other everyday - sometimes just closing my eyes and hoping today falls into next week then rolls into next month and praying next year appears before me in a better light.
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