“Being able to be in control of my body has become more and more important to me as I’ve gotten more ill. My need for the option of medical aid in dying is becoming so much more personal and immediate.”
Abigail Johnston, a lawyer and mother, has metastatic breast cancer and is advocating for medical aid in dying in her home state of Florida.
Abigail Johnston is a lawyer, wife and mother with metastatic breast cancer who is advocating for medical aid in dying in her home state of Florida.
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 since I’d already had a few clogs. My lactation consultant thought it was nothing but since the herbs weren’t working, she wanted me to see my primary care physician (PCP).
My PCP was not too concerned and felt sure that it was nothing. However, 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, 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.
The tech did not have a poker face at my mammogram appointment, 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, after some debate, they finally let me leave. It was after office hours at this point and I left a message with my PCP’s answering service on the way home. She called me back the next 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. The surgeon did the biopsy and we left with some amount of concern to wait for the results.
On March 8, 2017, we got the results of the biopsies. The suspicious lymph nodes were just full of milk but the lump in my left breast was breast cancer. Invasive ductal carcinoma.
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 limping at this point, 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 lumpectomy and my surgery was on April 11, 2017.
The surgeon was able to get clear margins and I was considered node negative (having cancer that has not spread to nearby lymph nodes). We hoped I would just need radiation and again waited for the results, still naively hoping we were in the clear. The oncotype score came back in the high side of the gray range and so we had to adjust our thinking to include chemo.
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 and 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. It took nearly a whole day and when we got the call the next morning that we needed to come in, 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 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 four screws each.
I kept going with the chemo and also did 10 days of radiation on my legs and my back. I started on another chemo drug cocktail in August of 2017 after finding out that the cancer had mutated so the previous medications were no longer working. Because there’s no cure, the cancer is always coming and mutating; we’re always trying to keep it in check. In September of 2017, I also had a full hysterectomy.
For now, all of my mets have shrunk and I’m getting more and more limber each day. I’ve added yoga to my routine, which is really helping with flexibility. In October of 2017, we finished closing up my law office and moved in with my parents for the help and support.
Recently, I’ve developed heterotopic ossification in each thigh, which basically means that I have a bone growing inside each of my thigh muscles. None of the bone pain I’ve been managing has prepared me for this much pain. We’re working on building muscle to cushion the growing bone and there may be more surgery in my future, once the ossifications stop growing.
My very first thought when we got the news was that I wanted to spend as much time as possible with my children. That’s what I’m doing. I’m spending time with my family and creating a new life and memories for as long as we have. Our focus 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 recently 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.
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 mess.
We live in three-month increments, in between scans. I live in constant pain and have to manage my energy and pain — pain interferes with everything. I protect my quality of life. Being able to take my kids to school and help them with their homework is incredibly important to me. I have to advocate so much for myself with doctors because they are so entrenched at throwing medicine at the problem. But sometimes the side effects of the medicine are much worse than the cancer itself.
Being able to be in control of my body has become more and more important to me as I’ve gotten more ill. I don’t want to die in a hospital with someone constantly interrupting to take my vitals. I want to die as peacefully as possible, among my family and friends. I hope that the option of medical aid in dying will become available in my home state of Florida before I need it.
March of 2020 marked three years since my diagnosis. I was told from the point of diagnosis that I have a 25% chance of living five years. My need for the option of medical aid in dying is becoming so much more personal and immediate.
My dad was a pastor most of my life and growing up I learned a great deal about God’s love for all of us. The idea that someone has to be in pain, uncomfortable, forced to go through an excruciating transition is not consistent with God being a God of love. I believe options are something everyone needs to consider. If there is a possibility of not being in pain and having your transition be something that is sacred, kind, loving, and healthy for the family and patient, that is exactly what the whole purpose of God coming to earth and saving all of us is. It’s not consistent to say that God would want us to be in pain.
I have friends going through this transition daily. Most of them don’t even get the benefit of hospice; they enroll only days before dying because doctors aren’t having these conversations with us — the ones who are terminal, the ones who have to deal with this. There are holes in our medical system, especially when it comes to end-of-life care.