I am a bit tired today, but I wanted to express my love to my girlfriends, so I am going to let Lisa Kogan say it for me:
"I like women. I like them as much or more than I like almost anybody. But the women I like best aren't always strong, and they're certainly not invincible. They are creative, they're idiosyncratic, and they're around if you need them. They complain, they console, and they can shop their way through virtually any crisis. They know how to raise hell and they know how to raise children. They've perfected the withering stare that makes a nasty salesperson, flight attendant, or coworker fold. My favorite women may feel bad about their necks, but they feel pretty damn good about their legs. They do not trash their ex's new squeeze monkey. They've never met a carbohydrate they didn't want to have a close personal relationship with. They brake for sex, sleep, and solitude, cashmere, and caffeine. They've got nerves of steel, the courage of their convictions, and excellent footwear. They're sugar and spice and everything I aspire to. They remain cautiously optimistic. "
Thank you Lisa Kogan.
On 6/23/10, at the age of 26, I was diagnosed with invasive ductal carcinoma...Stage 3 Breast Cancer. On 7/25/14, at the age of 30, I met Lolli, a 1 inch tumor in the left side of my brain; I have metastatic disease. On 2/3/17 Lolli became active again and as a result of treatment I have limited mobility in my right leg. I want to share my experiences so that loved ones, friends and others can follow along while my journey continues. Enjoy.
Wednesday, June 30, 2010
security blanket
7 days ago my life did a 180, my priorities shifted like an iceberg--sending waves through the core of my being. I am not who I was then, my friends, family and loved ones aren't who they were then--we are changed, we are joined, we are in a fight for my life--together. I go through bouts of feeling alone, I am the one who has cancer, I am the one losing the breasts, I am the one unsure of my future, I am the one whose childbearing years are now on the brink, I am the one scared shitless. But I am also the survivor. I am far from a lone warrior in this fight and I would gladly go to battle for others as they have gone for me. 1 out of 8 women will be diagnosed with breast cancer, I hope I took the bullet. Thank you so much for everyone who has reached out during this time, just 7 days for some, but for me they created the lifeline that will get me through this. That lifeline is created from each post, text, call, email, and message I have received. From the love and support that is jaw dropping and heartwarming. It is hard for me to respond to such an outpouring of support, but I want you to know that I read everything, enjoy the laughs and love, and it is honestly what is getting me through the day, each day, at this point. Don't stop, it sustains me.
7 days and my life flashed before my eyes. I am set on being a survivor, but lets be honest--women die from breast cancer. It is a scary reality that I have taken a hold of, wrapped neatly, and placed deep in the back of my thoughts. Negativity clouds the mind/body connection. I am not a glass 1/2 full type of lady, I can be pessimistic, I overreact, I hold grudges, and occasionally I flip-off the old lady driving 20 on the freeway. I am not the epitome of grace and I can cuss like a sailor. But despite my outlandish flaws I am working on repairing those mind/body connections to help me fight this fight. The saying "I'm not dead yet" has a whole new meaning these days.
7 days ago my biggest concern was......well I don't even think I had a concern. Now my days are packed with worrying, appointments, and trying to stay one step a head of the part of my body battling itself. So thank you once again to those who are wrapping me in warmth and love, everyone needs a security blanket...
Tuesday, June 29, 2010
today I was free
This morning I was productive. I took scheduling into my own hands because I hadn't heard from any of the referrals my surgeon had made for me. So I now have my genetic appointment scheduled tomorrow and my MRI appointment on Thursday. My stress headache melted away as things started falling into place. Then as I saw a break in the rain clouds, I called Patti for my first photo shoot before I lose my breasts.
The first of a few photo shoots, I had no idea what to expect. I don't think either of us did... Patti is an amazing, professional photographer, but I have never felt as vulnerable as I do right now...and topless, that is an entire other layer all together. Vulnerability is something that I admire in others. I don't recall that quality being something I think of when I scan through my personality. I usually have a plan of action, and if that plan goes off course, I have alternatives. I keep my guard up and emotions to a minimum----a majority of that is now out the window and I am a free bird. ha
Vulnerability is the bareness of breasts in the middle of a hiking trail. It is exposing your body to the decision of a mastectomy or double mastectomy, the introduction of chemo, the baldness of your head (and other areas), and the scars that will take the place of my breasts. Vulnerability is a silicone implant, the falseness of what was once real--the false sense of the marketability of womanhood.
Vulnerability was me today. It felt exhilarating, empowering and I regained a bit of the control that I felt I had lost during this past week. I laughed, smiled, and was topless.........showing me vulnerable--the most vulnerable part of me. It is broken, infected, and cancerous--it is a part of me and I showed it to the world. It was captured on film, it was priceless, it was perfect, it was the destruction of my stress headache for the day. I felt like I was the me again, a bit more brazen--breasts out and all--but it was great and there were no tears of isolation or sadness. Just the slight tears from squinting in the sun and the minimal leaking that comes from the smiling/laughing combination.
As I sit in bed those feelings have faded and I am jolted back to the reality of my life, which brings tears to my eyes and a knot in my throat. I am facing a lot, my future is uncertain, everyday changes, my headaches return, and sleep is fighting me tooth and nail.
But today, I was free.
The first of a few photo shoots, I had no idea what to expect. I don't think either of us did... Patti is an amazing, professional photographer, but I have never felt as vulnerable as I do right now...and topless, that is an entire other layer all together. Vulnerability is something that I admire in others. I don't recall that quality being something I think of when I scan through my personality. I usually have a plan of action, and if that plan goes off course, I have alternatives. I keep my guard up and emotions to a minimum----a majority of that is now out the window and I am a free bird. ha
Vulnerability is the bareness of breasts in the middle of a hiking trail. It is exposing your body to the decision of a mastectomy or double mastectomy, the introduction of chemo, the baldness of your head (and other areas), and the scars that will take the place of my breasts. Vulnerability is a silicone implant, the falseness of what was once real--the false sense of the marketability of womanhood.
Vulnerability was me today. It felt exhilarating, empowering and I regained a bit of the control that I felt I had lost during this past week. I laughed, smiled, and was topless.........showing me vulnerable--the most vulnerable part of me. It is broken, infected, and cancerous--it is a part of me and I showed it to the world. It was captured on film, it was priceless, it was perfect, it was the destruction of my stress headache for the day. I felt like I was the me again, a bit more brazen--breasts out and all--but it was great and there were no tears of isolation or sadness. Just the slight tears from squinting in the sun and the minimal leaking that comes from the smiling/laughing combination.
As I sit in bed those feelings have faded and I am jolted back to the reality of my life, which brings tears to my eyes and a knot in my throat. I am facing a lot, my future is uncertain, everyday changes, my headaches return, and sleep is fighting me tooth and nail.
But today, I was free.
Monday, June 28, 2010
hurry up and wait
My surgeon may be one of the most gentle people on the planet, despite that he cuts and rips open body parts for a living, you would think he taught kindergarten. He is into mind/body connection and seems genuinely interested in how I am processing my diagnosis.
At the very least I am going to have a mastectomy. My right breast has tons of calcifications and two lumps which makes the cancer multifocal. I have stage 3 breast cancer and will have the lymph nodes in my arm pit removed (approximately 7-24 of them). I will be having some more tests to determine a few other aspects of my care. I am scheduled for an MRI--there was a spot in my left (the to-date healthy breast) that they would like to look at, and it will also give them a better look at my lymph nodes in my right arm pit. Also I will meet for genetic testing, because I am so young and have no family history of breast cancer. If this test comes back positive then I will have a bi-lateral mastectomy. I have my appointment on Friday to meet with my oncologist to discuss treatment. I will be 100% having chemo, so I get to know a bit more about that on Friday.
It is a hurry up and wait situation, so that is what I am doing.
From this meeting it seems like I and care staff are leaning towards a double mastectomy. Losing both breasts doesn't bother me as much as you might expect. But what makes me cry and gulp for fresh air is that I won't be able to breastfeed...this breaks me a part. If I am lucky enough to have my eggs saved (discussing that option on Friday too, removal of eggs so they aren't effected by chemo) and am able to get pregnant I won't be able to provide my baby with the amazing qualities and bonding time of breast milk. I know I could use the tubes and have them at my nipples (after breast reconstruction & nipple reconstruction) but I am pretty sure that fake nipples don't produce oxytocin......it just kills me.
I wish that I wasn't the type of person that planned for the future. I almost wish I was the type of person who thought losing her boobs was the end of her--that they were what made her a woman. I would get new ones, feel better, done and done. But I am not that woman. My breasts are great, but they are a far cry from who I am.
If I was that person I wouldn't be concerned about having a baby, breastfeeding or how I would explain to my children that they have a higher risk for this silent disease. I wouldn't be terrified of not being able to have money to pay bills because I have to have surgery, to have to learn to function without lymph nodes. I think that being mature and so concerned about stuff leaves me vulnerable......weird but true. One day at a time doesn't work when you are planning for a future.
Today my brain is tired, and my body is exhausted. I have a headache that is working its way to the core of my brain and the innards of my body. I also have about 30 phone calls and emails to respond to and I don't have the energy to tell my tale of woe..... When I tell others it makes me sad, it is a burden I feel I have handed them... catch 22 I guess.
I am not sure if I should continue to work through this time up before surgery (financially it is a necessity really) but mentally and physically I don't know. Today the doctor told me this was the time to do stuff for me, and I am lost because I don't know what that is right now. I really feel like curling up in bed---I feel safe there. It supports my body and feels like home, I know each pillow and my blankets keep me at just the right temperature...it is turning into my sanctuary. I know this will change when I am forced to stay in bed because I am too ill to get out. But now I am making the choice. I choose to lay down and just rest, I choose to curl up and shut myself down and off from the world. I didn't chose to have a lump, I didn't chose to have cancer, but I am damn well choosing to stay in bed if I want, even on a sunny day if it makes me feel safe.
Disclaimer: I am a therapist and aware that secluding yourself in a bed isn't always the best thing to do. And no, I am not isolating so get your head out of the gutter. I am using what self-soothing mechanisms I can dredge up from my exhausted body/mind and using them to the best of my ability.
My mind is cloudy and my ability to put my thoughts in order is lacking. I am sleepy, but can't sleep. I am anxious and can't relax. I am angry, but can't yell. I am hurt, but lack the ability to heal. I have breast cancer, but I am not my breast cancer.
At the very least I am going to have a mastectomy. My right breast has tons of calcifications and two lumps which makes the cancer multifocal. I have stage 3 breast cancer and will have the lymph nodes in my arm pit removed (approximately 7-24 of them). I will be having some more tests to determine a few other aspects of my care. I am scheduled for an MRI--there was a spot in my left (the to-date healthy breast) that they would like to look at, and it will also give them a better look at my lymph nodes in my right arm pit. Also I will meet for genetic testing, because I am so young and have no family history of breast cancer. If this test comes back positive then I will have a bi-lateral mastectomy. I have my appointment on Friday to meet with my oncologist to discuss treatment. I will be 100% having chemo, so I get to know a bit more about that on Friday.
It is a hurry up and wait situation, so that is what I am doing.
From this meeting it seems like I and care staff are leaning towards a double mastectomy. Losing both breasts doesn't bother me as much as you might expect. But what makes me cry and gulp for fresh air is that I won't be able to breastfeed...this breaks me a part. If I am lucky enough to have my eggs saved (discussing that option on Friday too, removal of eggs so they aren't effected by chemo) and am able to get pregnant I won't be able to provide my baby with the amazing qualities and bonding time of breast milk. I know I could use the tubes and have them at my nipples (after breast reconstruction & nipple reconstruction) but I am pretty sure that fake nipples don't produce oxytocin......it just kills me.
I wish that I wasn't the type of person that planned for the future. I almost wish I was the type of person who thought losing her boobs was the end of her--that they were what made her a woman. I would get new ones, feel better, done and done. But I am not that woman. My breasts are great, but they are a far cry from who I am.
If I was that person I wouldn't be concerned about having a baby, breastfeeding or how I would explain to my children that they have a higher risk for this silent disease. I wouldn't be terrified of not being able to have money to pay bills because I have to have surgery, to have to learn to function without lymph nodes. I think that being mature and so concerned about stuff leaves me vulnerable......weird but true. One day at a time doesn't work when you are planning for a future.
Today my brain is tired, and my body is exhausted. I have a headache that is working its way to the core of my brain and the innards of my body. I also have about 30 phone calls and emails to respond to and I don't have the energy to tell my tale of woe..... When I tell others it makes me sad, it is a burden I feel I have handed them... catch 22 I guess.
I am not sure if I should continue to work through this time up before surgery (financially it is a necessity really) but mentally and physically I don't know. Today the doctor told me this was the time to do stuff for me, and I am lost because I don't know what that is right now. I really feel like curling up in bed---I feel safe there. It supports my body and feels like home, I know each pillow and my blankets keep me at just the right temperature...it is turning into my sanctuary. I know this will change when I am forced to stay in bed because I am too ill to get out. But now I am making the choice. I choose to lay down and just rest, I choose to curl up and shut myself down and off from the world. I didn't chose to have a lump, I didn't chose to have cancer, but I am damn well choosing to stay in bed if I want, even on a sunny day if it makes me feel safe.
Disclaimer: I am a therapist and aware that secluding yourself in a bed isn't always the best thing to do. And no, I am not isolating so get your head out of the gutter. I am using what self-soothing mechanisms I can dredge up from my exhausted body/mind and using them to the best of my ability.
My mind is cloudy and my ability to put my thoughts in order is lacking. I am sleepy, but can't sleep. I am anxious and can't relax. I am angry, but can't yell. I am hurt, but lack the ability to heal. I have breast cancer, but I am not my breast cancer.
Saturday, June 26, 2010
nights are getting harder
I shower at night, always have. I now cry in the shower, alone. My bedtime ritual has been stolen from me, and replaced with streaming tears, and gulps for air while my chest rapidly rises as I try to calm myself down. It is quiet in the shower, just the water running down my body, a body which is now foreign to me. I look down at my breast, swollen and bruised, yellow and dimpled like a pear and my arm pit, so sore that I can't wash my hair with my right hand and the tears come without any thought. I grieve in the shower too. For my husband, friends and family that are forced to go through this journey with me. For the woman I have lost-now hidden inside me, and for the woman I have now been forced to become--detached from her body, afraid, and numb.
I let the tears and snot run down my face. I give myself this time, my ritual has changed and I am working to embrace it. Maybe I need this time--I hold it together pretty good during the day--I am sick of tears and the panicky feeling I get when I think of what is to come. I need to wash it away before I go lay down for the night, before I try to close my eyes and quiet my mind of the racing thoughts that run a marathon of their own nightly. Water washes it all away, no kleenex to make my nose red and flaky (though it has begun to resemble my nipple quite nicely). It is gone down the drain--I step out and wipe everything away.
I am good for a period of time to be determined. I am good until I lay down, then the panic begins to come back. I feel it rise in my body like the temperature of water set to boil. As I write it is working its way through my stomach, soon to my chest--where a tightness takes over. I fight this tightness until my swollen, sore, weary body gives into sleep.
Today Scott ran his first full marathon today in under 4 hours! He is my rock, my strength and the person who I turn to at night when the tightness in my chest takes over. I am so proud of you babe! Love you.
I let the tears and snot run down my face. I give myself this time, my ritual has changed and I am working to embrace it. Maybe I need this time--I hold it together pretty good during the day--I am sick of tears and the panicky feeling I get when I think of what is to come. I need to wash it away before I go lay down for the night, before I try to close my eyes and quiet my mind of the racing thoughts that run a marathon of their own nightly. Water washes it all away, no kleenex to make my nose red and flaky (though it has begun to resemble my nipple quite nicely). It is gone down the drain--I step out and wipe everything away.
I am good for a period of time to be determined. I am good until I lay down, then the panic begins to come back. I feel it rise in my body like the temperature of water set to boil. As I write it is working its way through my stomach, soon to my chest--where a tightness takes over. I fight this tightness until my swollen, sore, weary body gives into sleep.
Today Scott ran his first full marathon today in under 4 hours! He is my rock, my strength and the person who I turn to at night when the tightness in my chest takes over. I am so proud of you babe! Love you.
Friday, June 25, 2010
yes they're fake, my real ones tried to kill me
First...while driving by the bikini coffee stand on my way to work this morning I became thankfull that my job doesn't require boobs and that I won't be fired because I have cancer.........though on the otherhand I would probably get a raise tied to my cup size....
Second, I am terrified of becoming sick as a dog. Not like, "oh your dog ate some grass" sick, but "the dog ate through the garbage bag sick". Where there is shit and throw-up everywhere, you clean it up, then you find more, then "two weeks later you find some in your closet" sick. I am terrified. Thinking about being sick, but at the same time welcoming the poison being pushed through my veins, brings tears to my eyes and places a large knot in my stomach.
I can do this. I am doing this. I can talk to doctors, do the research, itemize to-do lists and "questions to ask the surgeon" lists. I can do surgery, I can do recovery and I can do no/one/or half of a boob. I am not sure how I will do the treatment after surgery.......I have seen the dogs who ate the garbage....I have been the one to clean up the messes--I guess the best thing is that you keep that damn dog and love it no matter what, even when you find throw-up in your favorite shoes...
Second, I am terrified of becoming sick as a dog. Not like, "oh your dog ate some grass" sick, but "the dog ate through the garbage bag sick". Where there is shit and throw-up everywhere, you clean it up, then you find more, then "two weeks later you find some in your closet" sick. I am terrified. Thinking about being sick, but at the same time welcoming the poison being pushed through my veins, brings tears to my eyes and places a large knot in my stomach.
I can do this. I am doing this. I can talk to doctors, do the research, itemize to-do lists and "questions to ask the surgeon" lists. I can do surgery, I can do recovery and I can do no/one/or half of a boob. I am not sure how I will do the treatment after surgery.......I have seen the dogs who ate the garbage....I have been the one to clean up the messes--I guess the best thing is that you keep that damn dog and love it no matter what, even when you find throw-up in your favorite shoes...
Thursday, June 24, 2010
Day 2
Well it has been a full 24+ hours and I am still standing, only mini-breakdowns and a day of work, I feel pretty accomplished. I also felt a HUGE lump on the right side of my neck, a throbbing pain in my ear and soreness above my right shoulder blade. I had a "low grade" fever and was told to see the doctor to rule out infection. At the appointment I was told that my lymph nodes were irritated because of the biopsy. Good news.
Today I have become overwhelmed and in awe of the support and encouragement I have received. In a twisted way I am looking forward to what unfolds for the journey I have started. It began last night with friends, phone calls, emails and love extended across the country, for such an ugly thing this is, it was beautiful.
The beginning of my husbands journey is purchasing a pink shirt to wear at his marathon this Saturday. He was bounded and determined, but couldn't find anything at the expo other than a shirt that says "run girl run"--it is a V-neck and I am sure shows an appropriate amount of chest hair. ha
Tomorrow I am starting the beginning of a photographic journey with my dear and close friend Patti--she is also going to be my cancer doula, something that I have no words to express the amount of gratitude I have for her and our relationship.
I am drained and tired today...don't judge the post...I have lumps after all (humor, it is what sustains me)
Today I have become overwhelmed and in awe of the support and encouragement I have received. In a twisted way I am looking forward to what unfolds for the journey I have started. It began last night with friends, phone calls, emails and love extended across the country, for such an ugly thing this is, it was beautiful.
The beginning of my husbands journey is purchasing a pink shirt to wear at his marathon this Saturday. He was bounded and determined, but couldn't find anything at the expo other than a shirt that says "run girl run"--it is a V-neck and I am sure shows an appropriate amount of chest hair. ha
Tomorrow I am starting the beginning of a photographic journey with my dear and close friend Patti--she is also going to be my cancer doula, something that I have no words to express the amount of gratitude I have for her and our relationship.
I am drained and tired today...don't judge the post...I have lumps after all (humor, it is what sustains me)
Wednesday, June 23, 2010
today is the day
Today is the day I was diagnosed with invasive ductal carcinoma. I found a lump in my right breast about a week ago. Prior to finding the lump I had some nipple changes, it was flakey and red for a few months. I thought maybe it was a change in laundry detergent, or because I stopped birth control pills, I never thought that those type of breast changes meant anything......boy was I wrong. I went to my primary doc and she agreed that there was a lump and refered me to ultrasound. On Monday I had three ultrasounds, two mamograms and a double biopsy. Women, who were around my mothers age, kept commenting on how young I was, and that it was good I didn't have children.......
So today I get the first round of results. What it means is that I have breast cancer in my right breast, that has spread to my lymph nodes. They are doing more tests to determine the stage, etc... I have a consult with a surgeon on Monday, until then I wait. I am a planner and like to know what can/will/should happen--so I stopped by Borders on my way home today and bought books for myself and one for my unbelieveably supportive, caring and absolutely perfect husband--without him I don't know if I would be sitting here typing on the day I find out I have breast cancer. He is my rock, and as strong and loud that I am, he keeps me steady and in control--he encourages me and knows I like to talk and tell people what is going on--so here is my blog...
Welcome to my journey.
So today I get the first round of results. What it means is that I have breast cancer in my right breast, that has spread to my lymph nodes. They are doing more tests to determine the stage, etc... I have a consult with a surgeon on Monday, until then I wait. I am a planner and like to know what can/will/should happen--so I stopped by Borders on my way home today and bought books for myself and one for my unbelieveably supportive, caring and absolutely perfect husband--without him I don't know if I would be sitting here typing on the day I find out I have breast cancer. He is my rock, and as strong and loud that I am, he keeps me steady and in control--he encourages me and knows I like to talk and tell people what is going on--so here is my blog...
Welcome to my journey.
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