June 27th 2016 my entire life ceased to exist as I knew it. From that day on my life would be a seemingly constant stream of hours in waiting rooms reading 6 month old magazines, comparing the machine gun noise levels of the many MRI machines I’ve stuffed myself into and watching the dishwater fluid insides of clear plastic bags drain themselves into my veins from countless infusion chairs. I have recently sat through my 36th chemotherapy infusion overall. Every three months I have to have an echo-cardiogram done to make sure my heart (complete with a surprise congenital heart defect) can still handle my life saving chemo. Then there is the worry leading up to and after my next set of body scans. Worry there will be something new and lethal for the radiologist to find and how my life will again, never be the same. Or, more unfortunately, may lead to it ending in a haze of failure, pain and disappointment. From that day on I have known what it means to live with the certainty and uncertainties of a terminal illness.
That being said, recently, there is now an improbable light shining at the end of my tunnel. This is a short story about how things have gone from one end of the spectrum to the other. Or rather, from only one definite outcome to a new realm of possibilities.
It was the last day of January in the winter of 2016 that I found the lump. It was in my left breast, near the surface and no bigger than a dime. I was 35 at the time and thought it unlikely that it would be anything more than a cyst. I made an appointment to see my nurse practitioner two months later. She agreed that even though it had grown slightly, it was unlikely to be anything other than a cyst or lipoma. I do not have a large family history of breast cancer. A second cousin of mine developed a different kind of breast cancer over ten years ago which I am happy to say she recovered from and remains in remission. My NP made an appointment for me to have my first mammogram in may to rule out any chance of it being malignant. In the meantime I continued to work, run and carry on as usual.
The previous two years had been busy for me. I had moved from Nantucket Island to Portsmouth NH to help my parents run their business. I helped my friend sail his schooner up the ICW from Savannah Georgia all the way to Provincetown MA. I had managed to work full time and regain a lot of what I had lost in my savings. I went to the wedding of one of my best friends, met my future fiance and made plans for the coming year while having no clue as to what was happening inside my body. Looking back, near the time I found out how sick I was I recall mysteriously losing some weight. I was also sick to my stomach several times for no reason I could identify. Aside from that and a few nights of poor sleep, it was my only warning.
On may 6th 2016 I went in for my first mammogram. 5 hours and some drama later I left the hospital knowing I had breast cancer. The radiologist came into the ultrasound room I had been moved into and sadly told me that my lump had all the red flags of being breast cancer. In fact, he had found 5 altogether in both my breasts. Luckily, I guess, in the end the only one that turned out to be a tumor was the large one under scrutiny. I didn’t tell my parents right away as my mother had been recovering from a marathon she had run the day before. Throughout the month of may and into June I met with two surgeons an oncologist and a reproductive endocrinologist to try and preserve my future fertility during my treatment. I unknowingly spent a lot of time and money trying to extract and freeze my eggs not having any indication that this would end up being a futile effort. On top of that I ended up having 10 incredibly painful biopsies done to my chest. One a stereotactic procedure, to correctly identify the type of breast cancer I had.
My cancer is a relatively uncommon type though the diagnosis is on the rise worldwide. It is a type called HER2 neu/+ (Human Epidermal Growth Factor 2). About 1 in 5 people with breast cancer will have this diagnosis. It accounts for 20 to 25% of all breast cancer and is far more likely to transpire in younger women. Breast cells have a gene called HER2 which helps regulate breast cell production. My cancer cells have a gene mutation which allows that protein to grow in excess. My immune system was unable to locate and break these damaged cells down, thus the over-production of breast cells and consequently the presentation of a malignant tumor. This form of breast cancer is highly aggressive. Before the introduction of drugs like Herceptin it was considered to be ultimately lethal. It is also far more likely to reoccur in later years than HER2 negative cancer.
After my diagnosis I did my homework on my newly found situation. I discovered that in the first three stages of this disease it is quite curable. My surgeon and oncologist both agreed that I was somewhere between stage 2 and 3, with every reason to believe the cancer had not spread beyond my breast. I was hearing “good job” and being given pat’s on the back for having discovered the disease in its earlier stages. If I had waited for the disease to progress there would have been a lot less they could have done. I was told that chemotherapy would be my best option. Aside from the experience my cousin had years ago I’ve very little exposure to the workings of chemo.
There were four chemotherapy drugs that were to be given to me in intervals of three weeks leading to a total of six transfusions. I would need to have an infusion port catheter installed in my chest so the veins in my arms wouldn't be destroyed. On June 24th while under general anesthesia the port catheter was inserted under my skin above my right breast and into my superior vena cava which, in the end, took a year and a half for me to become used to. In the meantime my oncologist came up with a date to start my chemo. treatment in July. They still had yet to run the necessary CAT scans on my body that are required before every cancer treatment starts.
I had a few days to collect myself and to reflect on what was about to happen to my body. In truth I was angry. Angry at the large scar on my neckline, but mostly at the impending loss. The loss of what remained of my youth, my body, my hair . My sense of control and well being, my independence, any plans for my happy ending. Everything. No one gave me this disease, injected it into me or pushed me into a vat of it. I was betrayed, by my own cells. It is, as best I can describe it, a “severed" way to feel. There were three days between the surgery and the scans. They were the last three days I remained ignorant of what was really happening inside my body.
At the same time I was also ignorant of the fact that I was allergic to CAT scan dye. I don’t remember the first three to five minutes of that realization. I do remember the alarm and looking up to see twenty or so doctors surrounding me on the CAT scan table. After they had me stabilized in the E.R. with enough Benadryl to knock out a T-Rex I had a scheduled appointment with my Oncologist. My mom was with me along with the man/hero who would become my fiance. While I was shivering beneath a hospital blanket I told her how apprehensive I felt about the chemotherapy. How I really wanted to know it there were any other options. She said if that was what I really wanted to do the only other option would be a lumpectomy. Although, she didn’t think it was a good idea as chemo. would be the only way to remove all the cancer cells. Just as she was agreeing to schedule me for the surgery an unexpected thing happened. A call came through into the exam room we were in. Since cell phones came along I didn’t think they still used the phones on the wall for any reason let alone a life and death call.
She took the call outside the door. The others couldn’t hear her but I caught pieces of what she was saying. The only thing my mom and fiance noticed was the look on my face. The CAT scan technicians, despite my bad reaction, had managed to take a few pictures. The radiologist had been called immediately to examine them. My cancer had already spread, long ago.
The last thing I remember about that day, after telling my step dad the bad news, was telling my mom I’d agree to do the chemo. It had spread to my sternum. A large tumor lay there threatening to crack the bone in half. Two more large ones were found in my liver with two small tumors in my lungs and a small spot in my T11 vertebrae. My doctor made it clear that they could treat me and ease my pain for a time, but they could not save me.
The cancer had spread a year to a year and a half ago. So, I was somewhere between the age of 33 to 34 when a couple of undetectable cancer cells spread to my bones and my organs. Ignoring my lymph nodes entirely, which is rare. It then blossomed in the winter of 2015 to 2016. The chance of surviving five years with any form of metastatic breast cancer is 22%. A mastectomy would be useless as the cancer had already spread to my body. I was told by my doctors and palliative nurse to begin to set my affairs in order.
In the meantime I prepared myself for the upcoming chemotherapy. My fertility doctor called to tell me he could not proceed with the treatment because of ethical and logistical reasons. On the same day the left side of my sternum broke in half. I was in agony and continued to be in agony from the break long after my first chemo. treatment. A bone marrow biopsy was done to my sternum to confirm what my oncologist already knew, it was the same cancer that had spread from my breast. I began chemotherapy on July 8th 2016. Instead of the four infusions they had intended to give me they reduced it to three as they were no longer trying to eradicate the cancer, just control it. A week after my first infusion my fiance ended up carrying me into the E.R. with leucopenia. It turns out there were a lot more cancer cells in my bones than previously thought. When the targeted chemo. went after the cancer cells it entered my bones and ended up destroying a a lot of my white blood cells in the process. I ended up having to take the drug Neulasta to counteract the effect by inducing white blood cell production. My skin broke out in small but painful boils that required antibiotics. A week and a half later all of my hair began to fall out. A week after that the right side of my sternum cracked.
What can I say about chemotherapy. The stories I have heard are true. I was very sick during the three weeks between treatments. I was tired and weak, nauseous and felt a general malaise. The thing I was not prepared for was the pain. My bones literally felt like they were disintegrating inside me. I ran fevers, ate whatever I could and slept. I did this throughout the continuity of these first round of treatments. Despite all I suffered during the chemo. it did manage to shrink the tumors, five of which disappearing almost entirely. I was about ready to quit though, not willing to deal with any more side effects when my doctor decided to put me on a therapeutic dose of targeted therapy. For six months I remained on that. However, approximately three months in my cancer overcame the therapy and spread again. Another large tumor appeared in my breast along with one finally showing in a lymph node beneath my left arm. Two more small lesions were found in my lungs. Then, the worst news for me and my condition since my diagnosis. On May 11th 2017 I discovered my cancer had spread to my brain.
In my right Parietal there was a tumor barely two inches in diameter. I named this tumor lucky, by the fact that there were no other tumors in my brain besides. The treatment I had been on had failed months ago. My only warning had been some pain in the tumor area one morning before my scans were due. I was assured by my two oncologists an my neurologist that they would be able to successfully radiate the tumor instead of having to remove it manually. A fact that gave me some relief. However that fact that my prior treatment had failed still loomed like a dark cloud in my horizon. A week before my scheduled stereotactic radio-surgery I received a call from one of the lead Breast oncology researchers at Dana Farber Cancer Institute. I had met with her briefly a year ago by a request from a family friend, whom I must credit with helping extend my life. I had recently canceled the scheduled appointment I had made with her a year prior in lieu of my new situation. She wanted me to come see her at Dana Farber before radiology date. I brought my mom and my sister along for the visit. There they presented me with two trials that were taking place that might prove beneficial for me. At that point I couldn't imagine anything being beneficial for me but I listened and said I needed a few days to think about it. I had been dead set against being part of any trial in the beginning. Two things happened the day after I got back. I opened the local paper to discover that a little girl in my town who had been grappling with a glioblastoma for months had died. This little 9 year old girl, whom they gave little hope and few options to had died of this horrendous form of cancer. Then I was struck by an overwhelming epiphone. I had been figuratively stuck, ankle deep, in a long stretch of tarmack for a year watching the days go by. I could see the steamroller of my cancer far off but steadily on its way directly toward me. I realized I had three choices: scream and spit obscenities at it from far away, lay down and figure out a decent position to eventually be squashed in or...look for someone passing by with a chisel. Maybe one of these trials was my chisel. Later, I realized it may not be a chisel but an axe or a chainsaw. What was I willing to lose in my efforts to fight this thing. My radiation was scheduled for the following Monday, on the same day I was to give Dana Farber my response. In fact, just hours after my radio-surgery I called and gave them my decision.
A friend of mine asked me why I volunteered to be a “guinea pig”. In fact, it isn't an inaccurate description. There was no guarantee that this trial wouldn't just kill me. There were side effects associated with it such as organ failure and ulcerative colitis. But, I was dying. Plain and simple, I had a choice. A choice of how to spend my remaining days and help discover a new treatment. A treatment that might, just might help millions of people in my position live longer. It was a choice that millions of people around the world, including that little girl, didn't have. I wold have to travel to Boston, a lot! Every three weeks I would be receiving two chemotherapy drugs at Dana Farber and I would be monitored by scans and blood work. I gave a further 10 biopsy samples from one of my tumors on my first day along with 10 more after the following two cycles. I show up for full body scans every nine weeks. On every infusion date I show up, rain or shine. I submit to all the tests the need along with all the blood and plasma they require.
I have had a total of 11 tumors since this saga began. Within the span of two treatments my tumor sites had greatly improved. I have just completed my 21st infusion at DFCI. In total I have sat through 37 chemotherapy infusions since my diagnosis. It has not been without some significant challenges. The first being the ongoing effects of my chemotherapy. Though it has greatly improved my chances of surviving longer it does come with a price. I am sick and sore for at least two weeks out of every month. The tumor that was in my brain is now just a small pea sized scar of tissue, however I still get headaches. My joints are effected, my skin is effected and I sleep a lot more than I used to.
I have finally decided to apply for disability as I have realized that I cannot keep a full time job. I will need to move back to Massachusettes soon for easier access to health care in Boston. It will be a slow process for me and my fiance to find a place to settle in together. He has a much needed hip replacement surgery coming up and I will undoubtedly feel sick part for part of the time I am moving. I have set a goal for my self to continue with the trial for its entire length which will take anywhere from four to five years. I want it to work for all the subjects in this trial, not just myself. My ultimate goal is to help researchers develop these drugs into an FDA approved treatment for my specific type of breast cancer. Also, help expand the reaches and possibilities of treating other forms of breast cancer and other solid cancers with this trial drug.
It is very hard for me to ask for any help in this way but I know that I need it. I need help paying or food, bills, gas and most importantly getting to Boston and back for scans and treatments. I will not give up unless this trial fails. If that happens I have been pre-approved for another trial. Until I am told there are no other options I will not give up. I have realized that in order to do this I must accept help where it is given. To all those who are finding their own reasons to remain adamant in their battle against cancer: you are brave . Stay brave, risk the axe and don't stop. I will not quit, you have my promise. Thank you to everybody who reads this and to all those who have supported me.
Sent via the Samsung Galaxy S7 active, an AT&T 4G LTE smartphone
- roy gouge
- Didi C. Spencer
- Melissa Jones
Organizer and beneficiary
Catherine Morris Aguiar