About Me

My Story

In January of 2017, at the ripe old age of 38, I felt a lump in my left breast. At the time, I was tandem nursing my almost four (4) year old son and almost two (2) year old son. 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 (GetPUMPed!). Anyway, my lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my PCP.

My PCP was super chill and tandem nursed her kiddos, so she was not too concerned.  Her comment, as she referred me for testing, was that she was 95% sure that it was nothing but since my mom was then a fourteen (14) year breast cancer survivor and I’d never had a mammogram, due to being too young before I got pregnant and then pregnant again and nursing during and afterwards, 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 expect 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 out. 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 simply had no idea what could be happening. I was convinced that everything was fine and went to the appointment with the surgeon the following Monday afternoon 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 (IDC) which was ER/PR+ and HER2- was the diagnosis; I later understood that the results of the test revealed that I am actually HER2 low, which has become a viable treatment option during the time that I have been living with MBC. I later found out I am BRCA negative 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, which is the diagnostic threshold, or so I understand. We hoped I would just need radiation and waited for the oncotype results, which would tell us about whether I’d also 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 (a/k/a the “red devil”) and Cytoxan and then 12 rounds of Taxol. We went to a shop to try on wigs and I started to begin to understand that this cancer experience was going to continue and that I wasn’t able to avoid the more “obvious” side effects like losing the my hair.

I started chemo in June of 2017 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 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 clear of mets at this point, a blessing we didn’t know enough to appropriately appreciate. 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 30, 2017, 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 germline mutation, which carries a risk for many types of cancer, including breast, ovarian, prostate, pancreatic and, potentially, colon. 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 (they removed literally everything from my cervix to the uterus and my ovaries and everything in between) and I started Ibrance and Letrozole, my first line of targeted treatment, in August of 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 added acupuncture, chiropractic, supplements, diet changes and medical cannibis to my regimen.  I like to say that we’re combining the best of Eastern and Western medicine the best we can, under the supervision of my medical doctors. I do my best to ensure that every single doctor knows about what all the others are doing. It’s a hard job since electronic medical records aren’t shared easily and that’s a big burden to put on a patient.

In 2018, I developed heterotopic ossification (HO) 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 the cancer in my body 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/k/a abelesib), a medication fast tracked to approval by the FDA only a few months earlier in May of 2019. I was the first person at my cancer center prescribed Piqray, so that adjustment was rather complicated and challenging since I didn’t have the same support as I did when I started Ibrance. Piqray causes hyperglycemia, for which I had to take more medication to manage, amongst other side effects like changing the way food tastes and bone numbing fatigue. One important note about Piqray is that it does not cause diabetes, just the hyperglycemia which ended when I stopped taking Piqray.

My second PET scan in early 2020, right before COVID-19 shut down the country, showed that the partial response from the first PET has reversed and now the bone mets were becoming more and more metabolically active. So, as an experiment, we added Kisquali to Piqray. I got two (2) years of stability on Ibrance, which is a drug in the same class, so the hope was that the combination would be more effective.  We, in essence, chose to target multiple pathways to see if the multi-pronged approach will be more effective. The reason we chose Kisquali rather than going back to Ibrance is because there is data demonstrating good efficacy in women diagnosed when pre-menopausal for Kisquali and not Ibrance. That experiment worked very well for me.

Prior to my third PET scan on Piqray in June of 2020, I developed Bisphosphonate induced Osteonecrosis of the jaw (BIONJ). Zometa, the monthly infusion I’d been getting since October of 2017 affects the way that bone cells form and die as a way to interfere with the cancer’s ability to thrive and spread. Unfortunately, there are three areas of the body most sensitive to the bone dying — the jaw, the femurs and the feet. Since my femurs are already pinned with rods and screws, I’m not worried about a fracture there due to bone death. My feet will now be followed closer and I have dealt with with open areas of my jaw bone inside my mouth as well as the loss of several teeth. The pain from infections and bacteria cleared up quickly with the right antibiotics, but the sensitivity and chewing adjustments will likely stay with me now.

I remained stable on this regimen throughout the remainder of 2020, but there was one metastasis in my pelvis that simple wouldn’t die. After an unsuccessful bone biopsy in December of 2020, we decided to utilize Stereotactic Body Radiotherapy/Radiosurgery (SBRT), which is a set of very intense targeted radiation beams. Three sessions were completed in February of 2021, amidst getting vaccinated for COVID-19. In March of 2021, I had a PET scan, which showed a reduction in activity in the pesky met and stable disease elsewhere. While I was not at No Evidence of Disease (NED) or No Evidence of Active Disease (NEAD), my medical oncologist was satisfied that we could get more mileage out of this line of treatment.

In March of 2021, I lost my first tooth to bisphosphonate induced osteonecrosis of the jaw (BIONJ). Tooth #18, the molar in the back on the lower left side was so loose and mobile that it had to be gently extracted. I wasn’t prepared for how difficult it would be to lose a tooth — all these losses over time from MBC can become harder and harder. I had surgery on June 18th to repair the area and plug the hole.

October of 2022 was quite the month. My PET/CT came back indicating that the opacity in my lung was now characterized as a met. My medical oncologist referred me to a cardio-thoracic surgeon and we began contemplating the possibility of serious surgery and soft tissue mets for the first time. Once in the surgeon’s office, we discovered that there was a pretty significant typo and the opacity was almost certainly not a met. There were, however, new Bone Mets and so my treatment was changed to Verzenio and Faslodex, monthly shots.

After three months of Verzenio, dealing with a great deal of fatigue and diarrhea, we discovered in January of 2022 that not only had the Bone Mets grown and spread, but that I also now have Liver Mets. The thing in my lung isn’t doing anything, so still thinking that’s just an adhesion or something like it. After speaking with my medical oncologist and a second opinion or two, we transitioned to Xeloda (Capcitabene) and Taxotere (Docetaxol). The former is oral and the latter is IV Chemo. I had six (6) three-week cycles of this combination. The PET in April of 2022 showed an excellent response to the combination and the PET in July of 2022 (after I’d finished the combination and was just on Xeloda) demonstrated that the treatment was so successful that I’m now categorized as “No Evidence of Active Disease (NEAD)” for the first time since the diagnosis in 2017.

A second PET scan in November of 2022 demonstrated that the response to Xeloda is durable despite the hospitalization in September with sepsis, which we think was made possible by the inflammation in my gut, a side effect of Xeloda. As a result and due to the increasing hand-foot syndrome, we decided to adjust the dosage and the timing of dosage. This experience is the first time I’ve ever had to dose reduce or adjust the timing of medication as I’ve always been able to just muscle through. An important reminder that it’s not a bad thing to adjust medication to fit my quality of life. A third PET in March of 2023 demonstrated the ongoing durability of response to Xeloda and now my docs are now talking about spreading out bloodwork and scans, adding a whole lot of extra angst.

This rollercoaster of treatments and experiences can often be daunting and overwhelming. I wouldn’t be able to do any of the amazing things I’ve been able to do since my diagnosis without the support and love of my husband, Elliot. He is truly a caregiver to everyone around him and I don’t know I could handle this living with MBC thing without him.

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.