Reclaiming Beauty Through Tattoos
Donation protected
I turned thirty five this month (June 2020) and during the last two years, I have endured:
- Numerous scars
- Dozens of tests
- 6 months of IV chemotherapy
- 5 surgeries and 5 household moves
- 4 weeks of injections
- 3 career tracks derailed
- 2 years destroyed
All from one diagnosis.
But now is the time to move forward.
After researching the options available to women who have bilateral mastectomy scars and where nipples were lost during the lifesaving surgery - I believe that a meaningful and artistic tattoo is the way I need to go.
I know that this will be a difficult journey. I am requesting your support in this undertaking as I pursue the dream of transforming my scars into a beautiful work of art that will empower me to feel like a woman again.
And then my story can be rewritten from being a nightmare about one frightful diagnosis into one fairy tale of a fear conquered.
On the event that the money I save myself, plus the money raised in this GoFundMe, is more than needed to cover the artwork I am planning, I intend on donating the excess to a well researched breast cancer awareness foundation. I already have one in mind.
Thank you for your consideration.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
How many children's nightmares actually come true? Maybe it's an unfair question when I’m not talking about the clown under the bed or a demonic doll left in the corner. These may be scary stories indeed, but still the stuff of fantasy and fiction.
My nightmare growing up was something much more pragmatic. My greatest fear was breast cancer. Even though I was a young girl when my grandmother was first diagnosed with breast and then ovarian cancer in the early 90’s; I was fully aware of the severity of the disease. At least enough to recognize the pain in my grandmother’s face when I once accidentally walked in on her crying as she put on a prosthetic breast to hold the place of the one surgically removed.
Mama went into remission, but cancer returned the fall of 2002 when it also metastasized and quickly spread throughout her body. In May of 2003 when I was 17 years old, my graduation walk was full of emotional tears because she did not make it to see me receive my diploma.
The sickness and death of my grandmother left a lasting impression on me as I grew into womanhood and developed relationships. So much so that I frequently asked my long term partner whether they would stay in a relationship with me if I were to hypothetically lose my breasts due to cancer. My mother testing positive for the BRCA2 gene in 2011 only increased my silent concerns.
An anxiety which heightened when in my mid-20s I discovered a lump in my breast which required a mammogram to diagnose. Luckily, it turned out to be a benign, oily cyst - thought caused by a seatbelt in a car accident - but obviously my fears where at an all time high. That was also my first time coming head to head with an insurance company where I learned about the hoops they require a young woman under 40 to jump through in order to get a diagnostic mammogram.
Over the next few years following the false alarm, I was plagued with the possibility of my nightmare still coming true. I was able to contain my unease until the spring of 2018 when during a routine self-examination, I became aware of a change in my left breast. The normally smooth surface had become noticeably puckered and there was a hard mass under the skin that did not belong. Needless to say, I panicked.
But not everyone screams to the hills when panic sets in. Instead, I avoided getting the irregularity checked out for months. Ignorance is bliss, they say, and I was terrified of the possibilities that ran through my imaginative head. A part of me was even nervous that it would turn out to be another false alarm. I didn’t want to be crying wolf once again and be labeled a hypochondriac.
In October 2018 with the lump growing larger and encouraged by family and friends; I went to my primary care physician for a referral for a mammogram. Again, I was under 40 so it took extra steps detailing into my family history of early onset breast cancer and the proof of a positive familial BRCA2 gene to get the mammogram approved by the insurance company. Once it was, I had it as well as a diagnostic sonogram the same day.
My mother came with me to my appointment for support. Looking back, I’m sure neither of us quite knew what to expect, but it certainly weren't the answers that we got. After both scans and waiting for the radiologist to look at the ultrasound, I was told to bring my mother in from the waiting room so I wasn’t alone when receiving the news I had always feared.
I had cancer.
Following a biopsy; it was determined that I had triple positive, stage 2 breast cancer with scans showing multiple tumors in varying sizes in both breasts. In the first of a long road of frequent medical tests that poked and prodded their way around my body, I was also genetically tested to be BRCA 2 positive as well. That made me the third generation with the anomaly.
My first surgery was to put in an implanted port in my chest to make chemotherapy a (supposedly) easier experience for me to undergo. Even then, my first session took 9 hours long to complete. Less then two weeks later, while casually brushing over my hair with my hand, I was alarmed at the bunched clump of strands that clung to my fingertips. Within 4 hours, 85% percent of my hair had fallen out. I also noticed that my teeth got oversensitive and eroded. My stomach was a wreck. My nails on both hands and feet got a fungal infection that was so nasty and painful that I saw multiple doctors to get it under control. To this day, I am still trying to grow them back out. I was constantly fatigued. I had nerve issues. I was dehydrated often.
Some of the side-effects I recognized. Some, though, were new to me. I did not know that hair often changes texture and color following a chemo regimen as it slowly grows back in. I didn’t know that you could gain weight on chemotherapy even though you’re puking everyday. I especially had no idea how debilitating "chemo brain" could be. I had aways been a bit forgetful but it was amazing how fast information can fly out of your brain and how confusing simple processes can become when your brain is poisoned by the toxins of chemotherapy.
At one point, I was physically and emotionally drained to the point of needing hospitalization for my mental health. As someone who has battled with depression most of my life, I luckily was able to recognize that I needed help and medication monitoring. It interrupted my chemo treatment temporarily, but was a necessary delay. Adding to the emotional and medical turmoil was the instability of multiple moves around the city due to financial hardships.
Still, the first time I met with a plastic surgeon to discuss possible reconstruction, I was full of hope and expectation. The possibility of implants being inserted at the same time as my breasts being removed was the dream. Not only for appearance reasons, but it meant less surgery and less recovery time in the long run. My optimism, however, was dashed away when I was told by a brisk, impersonal doctor that based on the measurements taken by his nurse - my body mass index (BMI) was too high for the reconstruction portion of the surgery. He offered no direction on how to proceed or any consolation.
My last IV chemotherapy treatment was March 22, 2019.
Scans after chemotherapy was completed showed a reduction to the number and size of the tumors, but they were not completely eliminated. Good results, but even the best news couldn't change the fact that now I had to address surgery. Almost from the time of my diagnosis, I was aware I had a no choice about losing my breasts. Even after six months, it was not something I had come to terms with quite yet, but I knew it was inevitable nevertheless and the best decision for my health.
On May 14th, I had a bilateral mastectomy (both breasts removed) and spent three days in the hospital. The time flew by and I remember it hurt a lot, but even when helping to change my bandages or empty the drains from my surgery, I could not bring myself to examine my chest. It was weeks before I could finally survey the drastic change of my body. I spent the rest of May and the month of June, including my 34th birthday, in bed recovering.
In July, my mother and I moved from Chicago to a small town in central Illinois to live with family. I believe it was the best decision we ever made, but it meant finding new physicians which is always a bit of a challenge. When meeting with my gynecologist, surgery was once again already put back on the table. I didn’t expect it so soon after my mastectomies, even though it was not the first time the need for me to get a preventative hysterectomy was discussed. The BRCA2 gene linked breast and ovarian cancer so I knew that my reproductive organs were a ticking time bomb. I felt that I had only a short time to decide on whether or not I wanted to take medical steps for possible future biological children. Talks of fertilizations and embryo freezing sounded invasive and terrifying, but not as much as the idea of finding secret tumors already forming in my ovaries. So, in November, five months after I lost both my breasts, I was scheduled to have a complete hysterectomy.
In the months leading up to the surgery, I spent the days in dread with grim images filling my imagination. Thankfully, the procedure turned out not to be as bad as I expected. Modern medicine has come a long way and the operation is not as invasive as it once was. Fibroids were found, but tested negative for any cancerous cells.
My recovery was approximately six weeks with the added bonus of medically induced early menopause at 34 years old. Because of the type of cancer I was diagnosed with, I was unable to take any hormone replacement therapy to help with the side-effects that most women go through.
In the same time period, I started a new oral chemotherapy medication that made me extremely sick to my stomach. I got dehydrated to the point of needing IV fluids administered at my local cancer center. I ended up starting and stopping these pills multiple times due to the adverse side effects, but eventually we got it under control.
The holidays of 2019 were wonderful with the family and in mid January I met with a second plastic surgeon. After my previous discussion the year before in Chicago, I was anticipating a period of time before I would be able to begin any restoration to my chest. But I was given amazing news! I was scheduled for expanders to be put in for March - the first step to reconstruction.
A week after moving into a new place in late February, the 5th and final move, I had surgery for the fourth time. Three weeks of healing was interrupted by a world wide pandemic. I was quarantined by my immunocompromised state, since I was still taking chemotherapy, but I was able to continue weekly injections to stretch the skin of my chest. Once at the desired size, I was at a state of stand still until the country figured itself out and allowed elective surgeries again.
On June 12th I received my permanent prosthetics. I am undeniably excited about my reconstruction, but not the scars left behind by three chest surgeries in thirteen months. The flaws are already ugly to me. In some areas of my breasts I feel no sensation at all. In other places I feel in an 'at a distance’ sort of way where physical contact is perceived as odd sensational ripples like lost tiny boats on the sea. Sometimes, I am certain my nipples are hard, but then I remember, I actually don’t have any.
I’ve come a long way since the surgery which took my breasts from me, but I still avoid looking into the mirror. I focus on the scars that span from armpit to armpit and am reminded of what I’ve lost. Scars can be beautiful, I know this, but I don’t see mine as a thing of beauty yet. I want to change that by turning them literally into a work of art.
- Numerous scars
- Dozens of tests
- 6 months of IV chemotherapy
- 5 surgeries and 5 household moves
- 4 weeks of injections
- 3 career tracks derailed
- 2 years destroyed
All from one diagnosis.
But now is the time to move forward.
After researching the options available to women who have bilateral mastectomy scars and where nipples were lost during the lifesaving surgery - I believe that a meaningful and artistic tattoo is the way I need to go.
I know that this will be a difficult journey. I am requesting your support in this undertaking as I pursue the dream of transforming my scars into a beautiful work of art that will empower me to feel like a woman again.
And then my story can be rewritten from being a nightmare about one frightful diagnosis into one fairy tale of a fear conquered.
On the event that the money I save myself, plus the money raised in this GoFundMe, is more than needed to cover the artwork I am planning, I intend on donating the excess to a well researched breast cancer awareness foundation. I already have one in mind.
Thank you for your consideration.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
How many children's nightmares actually come true? Maybe it's an unfair question when I’m not talking about the clown under the bed or a demonic doll left in the corner. These may be scary stories indeed, but still the stuff of fantasy and fiction.
My nightmare growing up was something much more pragmatic. My greatest fear was breast cancer. Even though I was a young girl when my grandmother was first diagnosed with breast and then ovarian cancer in the early 90’s; I was fully aware of the severity of the disease. At least enough to recognize the pain in my grandmother’s face when I once accidentally walked in on her crying as she put on a prosthetic breast to hold the place of the one surgically removed.
Mama went into remission, but cancer returned the fall of 2002 when it also metastasized and quickly spread throughout her body. In May of 2003 when I was 17 years old, my graduation walk was full of emotional tears because she did not make it to see me receive my diploma.
The sickness and death of my grandmother left a lasting impression on me as I grew into womanhood and developed relationships. So much so that I frequently asked my long term partner whether they would stay in a relationship with me if I were to hypothetically lose my breasts due to cancer. My mother testing positive for the BRCA2 gene in 2011 only increased my silent concerns.
An anxiety which heightened when in my mid-20s I discovered a lump in my breast which required a mammogram to diagnose. Luckily, it turned out to be a benign, oily cyst - thought caused by a seatbelt in a car accident - but obviously my fears where at an all time high. That was also my first time coming head to head with an insurance company where I learned about the hoops they require a young woman under 40 to jump through in order to get a diagnostic mammogram.
Over the next few years following the false alarm, I was plagued with the possibility of my nightmare still coming true. I was able to contain my unease until the spring of 2018 when during a routine self-examination, I became aware of a change in my left breast. The normally smooth surface had become noticeably puckered and there was a hard mass under the skin that did not belong. Needless to say, I panicked.
But not everyone screams to the hills when panic sets in. Instead, I avoided getting the irregularity checked out for months. Ignorance is bliss, they say, and I was terrified of the possibilities that ran through my imaginative head. A part of me was even nervous that it would turn out to be another false alarm. I didn’t want to be crying wolf once again and be labeled a hypochondriac.
In October 2018 with the lump growing larger and encouraged by family and friends; I went to my primary care physician for a referral for a mammogram. Again, I was under 40 so it took extra steps detailing into my family history of early onset breast cancer and the proof of a positive familial BRCA2 gene to get the mammogram approved by the insurance company. Once it was, I had it as well as a diagnostic sonogram the same day.
My mother came with me to my appointment for support. Looking back, I’m sure neither of us quite knew what to expect, but it certainly weren't the answers that we got. After both scans and waiting for the radiologist to look at the ultrasound, I was told to bring my mother in from the waiting room so I wasn’t alone when receiving the news I had always feared.
I had cancer.
Following a biopsy; it was determined that I had triple positive, stage 2 breast cancer with scans showing multiple tumors in varying sizes in both breasts. In the first of a long road of frequent medical tests that poked and prodded their way around my body, I was also genetically tested to be BRCA 2 positive as well. That made me the third generation with the anomaly.
My first surgery was to put in an implanted port in my chest to make chemotherapy a (supposedly) easier experience for me to undergo. Even then, my first session took 9 hours long to complete. Less then two weeks later, while casually brushing over my hair with my hand, I was alarmed at the bunched clump of strands that clung to my fingertips. Within 4 hours, 85% percent of my hair had fallen out. I also noticed that my teeth got oversensitive and eroded. My stomach was a wreck. My nails on both hands and feet got a fungal infection that was so nasty and painful that I saw multiple doctors to get it under control. To this day, I am still trying to grow them back out. I was constantly fatigued. I had nerve issues. I was dehydrated often.
Some of the side-effects I recognized. Some, though, were new to me. I did not know that hair often changes texture and color following a chemo regimen as it slowly grows back in. I didn’t know that you could gain weight on chemotherapy even though you’re puking everyday. I especially had no idea how debilitating "chemo brain" could be. I had aways been a bit forgetful but it was amazing how fast information can fly out of your brain and how confusing simple processes can become when your brain is poisoned by the toxins of chemotherapy.
At one point, I was physically and emotionally drained to the point of needing hospitalization for my mental health. As someone who has battled with depression most of my life, I luckily was able to recognize that I needed help and medication monitoring. It interrupted my chemo treatment temporarily, but was a necessary delay. Adding to the emotional and medical turmoil was the instability of multiple moves around the city due to financial hardships.
Still, the first time I met with a plastic surgeon to discuss possible reconstruction, I was full of hope and expectation. The possibility of implants being inserted at the same time as my breasts being removed was the dream. Not only for appearance reasons, but it meant less surgery and less recovery time in the long run. My optimism, however, was dashed away when I was told by a brisk, impersonal doctor that based on the measurements taken by his nurse - my body mass index (BMI) was too high for the reconstruction portion of the surgery. He offered no direction on how to proceed or any consolation.
My last IV chemotherapy treatment was March 22, 2019.
Scans after chemotherapy was completed showed a reduction to the number and size of the tumors, but they were not completely eliminated. Good results, but even the best news couldn't change the fact that now I had to address surgery. Almost from the time of my diagnosis, I was aware I had a no choice about losing my breasts. Even after six months, it was not something I had come to terms with quite yet, but I knew it was inevitable nevertheless and the best decision for my health.
On May 14th, I had a bilateral mastectomy (both breasts removed) and spent three days in the hospital. The time flew by and I remember it hurt a lot, but even when helping to change my bandages or empty the drains from my surgery, I could not bring myself to examine my chest. It was weeks before I could finally survey the drastic change of my body. I spent the rest of May and the month of June, including my 34th birthday, in bed recovering.
In July, my mother and I moved from Chicago to a small town in central Illinois to live with family. I believe it was the best decision we ever made, but it meant finding new physicians which is always a bit of a challenge. When meeting with my gynecologist, surgery was once again already put back on the table. I didn’t expect it so soon after my mastectomies, even though it was not the first time the need for me to get a preventative hysterectomy was discussed. The BRCA2 gene linked breast and ovarian cancer so I knew that my reproductive organs were a ticking time bomb. I felt that I had only a short time to decide on whether or not I wanted to take medical steps for possible future biological children. Talks of fertilizations and embryo freezing sounded invasive and terrifying, but not as much as the idea of finding secret tumors already forming in my ovaries. So, in November, five months after I lost both my breasts, I was scheduled to have a complete hysterectomy.
In the months leading up to the surgery, I spent the days in dread with grim images filling my imagination. Thankfully, the procedure turned out not to be as bad as I expected. Modern medicine has come a long way and the operation is not as invasive as it once was. Fibroids were found, but tested negative for any cancerous cells.
My recovery was approximately six weeks with the added bonus of medically induced early menopause at 34 years old. Because of the type of cancer I was diagnosed with, I was unable to take any hormone replacement therapy to help with the side-effects that most women go through.
In the same time period, I started a new oral chemotherapy medication that made me extremely sick to my stomach. I got dehydrated to the point of needing IV fluids administered at my local cancer center. I ended up starting and stopping these pills multiple times due to the adverse side effects, but eventually we got it under control.
The holidays of 2019 were wonderful with the family and in mid January I met with a second plastic surgeon. After my previous discussion the year before in Chicago, I was anticipating a period of time before I would be able to begin any restoration to my chest. But I was given amazing news! I was scheduled for expanders to be put in for March - the first step to reconstruction.
A week after moving into a new place in late February, the 5th and final move, I had surgery for the fourth time. Three weeks of healing was interrupted by a world wide pandemic. I was quarantined by my immunocompromised state, since I was still taking chemotherapy, but I was able to continue weekly injections to stretch the skin of my chest. Once at the desired size, I was at a state of stand still until the country figured itself out and allowed elective surgeries again.
On June 12th I received my permanent prosthetics. I am undeniably excited about my reconstruction, but not the scars left behind by three chest surgeries in thirteen months. The flaws are already ugly to me. In some areas of my breasts I feel no sensation at all. In other places I feel in an 'at a distance’ sort of way where physical contact is perceived as odd sensational ripples like lost tiny boats on the sea. Sometimes, I am certain my nipples are hard, but then I remember, I actually don’t have any.
I’ve come a long way since the surgery which took my breasts from me, but I still avoid looking into the mirror. I focus on the scars that span from armpit to armpit and am reminded of what I’ve lost. Scars can be beautiful, I know this, but I don’t see mine as a thing of beauty yet. I want to change that by turning them literally into a work of art.
Organizer
Monique Derie
Organizer
Decatur, IL
