Aimee Reed

Dear Joan,

Thank you so much for sharing your story and giving me courage through your “bald” photo.  I purchased your book “Had I Known” on September 23, 2015.  At the time I was almost done with my chemotherapy (the red devil to be specific).  At first I couldn’t put your book down and then I started to get mad that you were able to spend your summer in Maine at what sounds like a very picturesque camp.  I was mad because I had spent my chemo summer on the sidelines watching my teammates train and compete in triathlons that I had dreamed and trained all winter for.  I put your book down for a few months while I went through a modified radical mastectomy.  About half way through my radiation treatments I had picked your book back up and ironically at the place where you were experiencing similar effects of the red devil that I did.  Sadly, I found comfort knowing that I wasn’t the only one who felt the way I did.  I too live in Connecticut and someday hope to meet you in person.  The following is my story, thank you for reading it.

At the time I was 31 years old, and on the brink of starting my most challenging triathlon season yet.  I had registered for 4 sprint triathlons, 1 Olympic distance triathlon and 1 Ironman 70.3 triathlon.  2015 was going to be the year that linked me from amateur triathlete to Ironman 140.6!!!!  On Friday, February 20, 2015 I found a lump the size of a golf ball on the side of my right breast.  I called my GYN doctor first thing Monday morning.  He saw me that day and did an exam.  He told me that what I had was a cyst and that it would go away on its own, nothing to worry about.  

I went on vacation for two weeks and during this time I noted that the lump was getting bigger.  In fact, my breast was getting too big for my bra.  When I returned from vacation I saw the doctor again.  He again told me that it was just a cyst and that I should stop taking the birth control pill for 10 days and then start taking it again after that.  Again, I saw no change other than that it was getting larger and harder.  I again went back to my doctor.  He ordered a mammogram and an ultrasound.  

The mammogram came back inconclusive and that the radiologist wanted to do another film.  The ultrasound showed something but was also inconclusive and the radiologist recommended a whole breast ultrasound.  I had both tests done again and a week later was told that the mammogram came back normal but that I have dense breast, which is common for young women.  The whole breast ultrasound also showed that something was there but that the radiologist was not sure what it was and recommended another ultrasound specific to that area.  I went back to my doctor who could tell I was frustrated with the results of these tests.  By this time, two months had gone by and I still didn’t have any answers or relief.  My doctor went to the hospital and reviewed the films with the radiologist.  

I was told that I in fact did NOT have cancer but yet at this point what was a cyst is now a cluster of cysts that are now infected.  I was prescribed an antibiotic  for five days and was told that my doctor would see me in a month!  I took the antibiotic for the five days and saw no change.  I was not waiting a month to see this doctor again; I called his office and demanded a referral to a surgeon to have the "cyst" drained.  

I met with the surgeon and he tried to aspirate the "cyst" however nothing was coming out.  He frantically called the radiologist to make sure he had the right spot and then decided to do a biopsy.  April 28, 2015 I was informed that I have stage 3B, inflammatory breast cancer (IBC), triple negative, and BRCA-2 positive.  This is an extremely rare case considering my age, the type of cancer and the two other factors of being triple negative and BRCA-2 positive.  I am in less than a 1 percentile of all breast cancer patients.  I had an MRI, CT scan, PET scan, met with my oncologist, had surgery to place a chemo port all within a weeks time.  The PET scan showed a node on my right lung (2mm), this node is not cancerous but is also directly behind a rib so it is not operable or able to be biopsied without breaking the rib. 

I had 16 doses of aggressive chemotherapy.  After my first dose of chemo, I went to my hairdresser and explained my situation.  That day I had two 8-inch braids cut and donated.  After the fourth dose my hair started falling out in bunches.  My sister came to my house and buzzed my hair all while her and I was laughing.  I was able to continue working through the first 12 doses of chemotherapy.  I was also able to go watch my triathlon team compete in each of their races.  The first race took place at the Mystic YMCA, where we all trained together as a team for the last two years.  I arrived that morning at the YMCA, parked and made my way to the transition area where I met up with my team.  After a few minutes I looked around and realized that they were all wearing the same shirt printed with “we TRI 4 Aimee” on them.  This was the first time that I couldn’t control the tears.  This team had already done so much for me; prayer circles, monetary donations, and provided me with a chemo-care package.  This team wasn’t letting me give up.  

It was the Tuesday before labor day weekend that my white blood count started to drop dramatically.  I was hospitalized for 5 days with febrile neutropenia, an infection of unknown origin.  It was only days after this that I had to have my port taken out because the skin over it was breaking down and was open to the site.  I had to have a PICC line put in my arm which works the same way as a port but instead of having a port under the skin, I had a tube that hung out of my arm.  The last 4 doses (month and a half) of AC, also known as, “red devil” left me bed ridden and with a constant low grade fever.  Also, during this time I had to have a nurse come once a week to change the dressing around the PICC line and everyday I had to give myself a dose of Heprin through the PICC line.  A week after my last treatment, I had the PICC line removed.

After not working during that time, I was able to return to work for a couple of weeks.  On November 4, 2015 I had a right modified radical mastectomy, lymph node dissection (18 of 20 removed) from my underarm area.  At this time I was also informed that I had cancer in the lymph nodes along my collarbone and along my sternum.  These lymph nodes could not be removed.  I was also informed that the doctors were pleased with the reaction I had to the chemotherapy, as this type of cancer doesn't usually respond to the chemotherapy treatment.  I was hospitalized for three days and was sent home with two drains in place.  

As a result of the surgery I have lymphedema in my right arm and along my trunk.  I go twice a week for PT and lymphedema drainage massage.  I wear a custom made sleeve and glove everyday to assist with drainage between appointments.  Just this week the PT decided that I should have a pump at home to assist with drainage as well. 

On December 10, 2015 I started radiation to my entire chest wall.  I have completed 28 of these treatments and 5 doses of what they call "boost" doses.  The boost doses  targeted my scar area directly.  My skin is a deep purple color, constantly painful, blistering, and peeling.  The radiation also leaves me extremely fatigued to the point where I sleep all day and all night on some days. 

I have completed all of my treatments, as there are no drugs or treatments approved to help maintain a state of remission for triple negative breast cancers.  After radiation I will continue to be scanned regularly.  Due to the BRCA-2 gene mutation I am at high risk for developing cancer in my left breast, melanoma, ovarian, and pancreatic cancer.  I will also be scanned for all of these cancers (except the pancreatic as there is no screening tool).  In about six months I will have a prophylactic mastectomy on the left side and reconstruction to both sides.  In 3-5 years I will have a prophylactic complete hysterectomy.  

This is a new way of life.  I am thankful for my triathlon team who has been by my side every treatment of the way.  Literally, they would come and sit with me during my 5 hour chemotherapy sessions and would entertain me with their training stories.  I like to think that I helped them along the way with training suggestions.  They tell me I helped them by reminding them that the reason they “tri” is “because they can”.  That had always been my mantra, just “tri because I can”.  They started a movement called "We TRI 4 Aimee" and have dedicated their 2015 season to me.  This was such an honor to be included in the 2015 season even if I wasn’t racing I was “tri-ing” every stroke, pedal, and step of the way with them.  I am a very lucky girl to have such a loving community to support me through this journey.  

Thank you again for reading about my story.

Love,

Aimee Reed

Please find me on Facebook as "weTRI4aimee" and like my page.