My Story

In January of 2017, at the ripe old age of 38, I felt a lump in my left breast. I was tandem nursing my almost 4 year old and almost 2 year old at the time. I started taking herbs and saw my lactation consultant pretty quickly since I’d already had a few clogs. I always had an overabundance of breast milk, so much so that we donated over 25,000 ounces to a milk sharing group during the 4 years of nursing and pumping. Anyway, my lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my PCP.

My PCP is super chill and tandem nursed her kiddos, so she was not too concerned.  Her comment was that she was 95% sure that it was nothing but since my mom was then a 14 year breast cancer survivor and I’d never had a mammogram, she sent me for a mammogram and a diagnostic ultrasound.  Since we were expecting some difficulty with my dense and milk filled gigantic breasts (seriously, I went from barely a B to at least a DD while nursing and I’m 5’3″), she told me not to let the radiologist do a biopsy if there was any suspicion but to call her for a referral to a specialist.
I didn’t know what to expect at the mammogram appointment but I certainly did not except to drench the machine in milk.  Also, it HURT!!!  The tech wasn’t very happy about milk everywhere but seriously, that crazy machine HURT!!  I pumped before the scan and pumped again during a break and we got some pictures.  The tech didn’t have a poker face, so I knew something was up.  After the diagnostic ultrasound, the radiologist came in and wanted to do a biopsy right then.  Since my PCP had already told me to call her after the mammogram, I explained that and they freaked.  I was taken to three (3) different people, including a social worker, and I was required to sign liability waivers before they finally let me leave Against Medical Advice (AMA).  It was after office hours at this point and I left a message with my PCP’s answering service on the way home.  It was a Thursday.  She called me back that Friday morning after having looked at the scans and the report.
I think the only explanation at this point for the fact that I was not freaking out was that I was in denial. I was convinced that everything was fine and went to the appointment with the surgeon the following Monday without trepidation.  In hindsight that was pretty naive but I am thankful for a few more months without the weight of cancer in my life.
The surgeon did the biopsy in her office that day, also not what I was expecting and we left with some amount of concern to wait for the results.  I leaked milk from the biopsied area (at around 10 o’clock right outside the aureole on my left breast) for about a week and my kiddos thought that was pretty funny. The crazy bruising wasn’t as funny and the anxiety even less.
On March 8, 2017, we got the results of the biopsies.  The suspicious lymph node was just full of milk but the lump in my left breast was breast cancer.  Invasive Ductal Carcinoma which was ER/PR+ and HER2- was the diagnosis.  I later found out I am BRCA- but then so was my mother.  At that point, we met with a medical oncologist and a radiation oncologist and started the process of drying up my milk.  It was tremendously difficult and abruptly weaning both boys was just plain awful.  I felt like I was walking around with a bomb inside me.  I was also limping, favoring my right leg — I’m not a complainer and I simply didn’t bring it up. In hindsight, that wasn’t the smartest move.
We decided to do a modified lumpectomy a/k/a an oncoplasty reduction, and my surgery was on April 11, 2017.  The surgeon was able to get clear margins and I was considered node negative since only one of the four (4) sentinel nodes had some trace cancer cells.  Trace cancer cells means less than 200. We hoped  I would just need radiation and waited for the oncotype results, which would tell us about whether I’d need chemotherapy.   We were still naively hoping we were in the clear and the original staging of 2b was correct.
The Oncotype score came back in the high side of the gray range (27) and so we had to adjust our thinking to include chemo.  The original plan was 4 rounds of Adriamyacin and Cytoxan and then 12 rounds of Taxol.
I started chemo and in the haze of the day after the first chemo treatment nicknamed the “red devil,” my medical oncologist called to say that something was wrong with my bloodwork (he didn’t say tumor markers then) and that we’d need to do more tests.  Still naive, I didn’t get upset or exercised and I went in for a bone scan and CT scans within a few days. Took nearly a whole day and when we got the call the next morning that we needed to come in, didn’t matter what time, just come, a sense of doom began to settle over us.  The weight of all that was and all that might be was stifling.
The next day, June 22, 2017, we went to my medical oncologist’s office to find out that the cancer had spread, not through my lymph nodes, but through my blood to take up residence in all of my bones.  That limp I mentioned earlier, turns out I had a 5 cm tumor in the middle of my right femur.  My organs were and are clear of mets so far.  My husband had insisted on coming to my appointment (thank God because I’d initially told him to stay at work) and we both cried and cried and cried.  Life as we knew it had already shifted and now it had taken a dark turn.
About a week later, on June 30th after having multiple MRIs and skeletal studies, an Orthopaedic surgeon put a titanium rod inside each femur secured by 4 screws each.  We also did some additional genetic testing and found out that I’m positive for the ATM mutation.
I kept going with AC but we decided to leave Taxol for later.  I did ten (10) days of radiation on my legs and my back (big lesion at L2) in July as soon as I was healed enough from the surgery.  I had a full hysterectomy on September 18, 2017 and I started Ibrance and Letrozole, my first line of targeted treatment, in August, 2017.
I was able to stay on my first line of treatment for approximately two (2) years, during which we finished closing up my office and moved to Miami to live with my parents for the help and support.  I also accessed my private disability benefits and applied for Social Security benefits.  I’ve discovered that becoming educated and keeping up on research as much as possible has become a little like a full time job!
I’ve added acupuncture, chiropractic, supplements, diet changes and medical marijuana to my regimen.  I like to say that we’re combining the best of Eastern and Western medicine the best we can.
In 2018, I developed heterotopic ossification in each thigh, which basically means that I had bone growing inside each of my thigh muscles.  None of the bone pain I’d been managing up to that point, prepared me for that much pain.  Once the ossifications stopped growing, I underwent more physical therapy to build muscle to cushion the growing bone and there may be more surgery in my future.
My very first thought in June of 2017 when we got the news was that I wanted to spend as much time as possible with my children.  Our focus now is living in the present and working to maximize the joy of the time we have.  I’ve got boxes started for both Boys and I’ve been working on letters and cards and mementos.  I worked with a non profit called Thru My Eyes to create a video for my children to watch after I’m gone.  I’ve also started a box for my husband to stash important reminders and letters.
In August of 2019, a PET scan revealed that my cancer had mutated and my first line treatment was no longer effective.  Since we’d done genomic testing and discovered that my cancer has the somatic mutation, PIKC3A, I was able to start Piqray, a medication fast tracked to approval by the FDA only a few months earlier in May of 2019. Piqray causes hyperglycemia, for which I take more medication to manage.
Thinking about leaving my kids sometimes leaves me paralyzed but it also clarifies things.  While I’m still able, I get out of bed each day and spend as much time as I can with them.  When I can’t get out of bed because of all the side effects I deal with daily, we get lots of snuggles and cuddles.  This is our life now, in all its beautiful, sacred mess.

3 thoughts on “My Story

  1. So sorry to hear all that you have been through, I will keep you in my prayers, my daughter who is in her twenties have many autoimmune disease as well as rare, it is a difficult journey to say the least, she now has a port in her chest and her life has never been the same, I am happy to see when her pain is not so bad however it has been a long time since that took place, I try each day to remember that God is in control and he loves her more than I do

    Liked by 1 person

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