My Inflammastory, looking back One year after Diagnosis, how it all began
Not long ago I thought myself quite healthy and rarely spent time in any medical setting (beyond regular visits with my midwife). But in the beginning of my second pregnancy, in May of 2015, I began experiencing problems with my left breast. Initially I assumed my discomfort was associated with pregnancy and/or nursing, as I was also in the process of weaning my 18 month old daughter. It started with my breast increasing in size, followed soon after by a palpable mass, and over a few months developed into inflammation, tenderness, redness, itchiness and pain. I visited my primary care doctor several times as the symptoms evolved. First I had an ultrasound of my breast (which showed nothing troubling), then I took a round of antibiotics to rule out a cellulitis infection. There was no improvement, so I went in for a biopsy in late August. I truly didn’t allow myself to even consider the possibility of cancer and soon after, I took a cross-country trip to visit family and friends. I was wearing ice packs in my bra on and off at this point, but hey, I’m pregnant, my body is doing all kinds of crazy things right now. I got the call while I was away that the results were inconclusive and took this as a good sign. I casually scheduled a follow-up biopsy for when I returned to home a couple weeks later.
In late September, after my second biopsy, my breast turned purple. This is apparently a normal side-effect from the procedure (which is very uncomfortable), but that was when some real worry finally set in. There was a week of waiting and phone tag. On October 2, the receptionist was the one to give me the shocking news that my tumor was malignant. It was the day my 4 year old niece was the first to say “I’m sorry you have cancer.” Within hours of this call, she and the rest of my family visiting left town. I couldn’t say anything, just cry. I called my husband and just started crying into the phone. I called my mom and did the same. But what else do you do after you receive this kind of news? You find an oncologist. You undergo a bunch of tests. You make a treatment/life plan.
One week later, after consulting with a local oncologist and some limited scans, I was diagnosed with Invasive Ductal Carcinoma (ER/PR +, Her2-), at 32 weeks pregnant. The tumor was estimated at 4 cm and I was given a Stage 2 treatment plan of lumpectomy/mastectomy, as soon as possible. I did not feel satisfied or comfortable with this doctor and I sought out a second opinion at a larger/specialty cancer center. My situation was more complicated because of my pregnancy and because we live in such a small and isolated place. Also, my symptoms were still evolving at this point and my breast became heavy/denser and the skin became dimpled. On the recommendation of my midwife, I contacted the Seattle Cancer Care Alliance and met my current oncologist a week later. She gave me the clinical diagnosis of Inflammatory Breast Cancer, which was never even mentioned by the first doctor. I had additional screening done and the cancer was discovered in my lymph nodes as well. The treatment plan for this rare, advanced and aggressive cancer was intense and drawn-out; four months of 2 types of neoadjuvant chemotherapy, one month off, modified radical mastectomy, one month off, 30 radiation treatments, one month off, hormone suppression therapy for 6 months and aromatase inhibitor therapy for 5 years. I had never even heard of IBC and now it had taken over my life in a moment. It was surreal; I was arranging cancer treatment AND a revising my birth plan at the same time.
From last November through July of this year I was in treatment. During most of this time, I refused to look at statistics or talk about my prognosis. No internet searches or support groups. Phone call after phone call, appointment after appointment, I often convinced myself I was talking about someone else. Call it denial or just saving my sanity, I had to let the professionals hold all the details. Cancer isn’t a stranger to my family, as my dad passed away from the disease when I was a teenager, but he was young and healthy too. The treatments were hard on him, and I had a lot of fear going into it, especially with my pregnancy. Most people don’t realize it is “safe” to have chemotherapy during the second and third trimesters; the drugs don’t pass through the placenta. And it is often easier to tolerate for the mother because of a higher blood volume. My baby and I started chemo together the day after my daughter’s 2nd birthday and it wasn’t that bad. The hardest part for me was the adjustment to becoming a cancer patient-all the time and attention and logistics. I was skeptical and overwhelmed, but felt confident that my baby would be fine. Nonetheless, I was quite the spectacle at the oncologists office-young, super pregnant with a toddler in tow. Chemo made a surreal diagnosis real. It was the first step in treatment and it went on forever. I lost count of how many times they had to verify my name and birthdate; to make sure I was truly due the poison that would make me sick to help me get better.
I was induced early and had a normal labor and delivery after one round of chemo. My baby was healthy, but I was not. Quickly I let go of being a full-time mom and shifted my focus to myself. I learned quickly to let go of a lot, and to ask for help. My mother came to live with us and my husband was on leave from work. I could not nurse my baby while undergoing treatment, which was very hard to accept initially, and then likely for the better in hindsight. We utilized donated breastmilk and my husband was doing most of the night feedings. He and the baby accompanied me to almost every appointment and treatment. We were traveling quite a distance to the cancer center so my mother and sister were caring for our 2 year old at home. It felt like a full time job just to manage treatment and all the logistics involved. Fatigue and anxiety were overtime.
For my weekly Taxol infusions in the spring, I transferred care closer to home, reducing our journey from 4 hours to 1 hour each way. Despite the hassle and expense of ferries and traffic and overnight lodging, I fear the inconsistency in my care was detrimental. While my inflammatory symptoms responded well to the first chemo, my tumor did not and seemed to grow larger. I raised this issue with my interim oncologist over the 3 months of chemo, but she was not familiar enough with me or my case to address it. By the time I had surgery in May, my breast tumor was 9 cm and I still had cancer in my lymph nodes. I was beyond ready to have it all cut out of me but the experience was dramatic and intense. There was a relief on the other side of it and the recovery was doable.
Because of all the residual cancer, I had oral chemo along with my 30 radiation sessions, which I completed at the end of this July. We had to pay for the pills out of pocket because they were not approved by insurance. $5,000 was far less than I expected, but I definitely would’ve rather taken a vacation. This made me appreciate how much insurance had covered up to this point. I can’t even imagine the total amounts for each phase of treatment. We were temporarily living in Seattle for this part of treatment, which made things easier and harder at the same time. It felt good to be close to SCCA and “go to work” just a few minutes down the road, 5 days a week with the laser. But it was hard live away from home and friends for 6 weeks with 2 little ones. My skin handled it alright, and by the time radiation was over, I was so experienced with this cancer business that the burns didn’t really phase me.
I am lucky that I had so much help and support through this journey, but it was and still is a daily struggle. My husband is back at work, my mother has gone home, and my almost 3 year old is in preschool. I am still stiff and sore, moody and impatient, far from the ideal mother I want to be. But I am doing my best in my new life, much less consumed with cancer. It is hard to put into words the rollercoaster of thoughts, feelings, and physical challenges this year of treatment has bestowed upon me, but I continue to try. It is even harder to process and understand it, but putting in into words has helped me. Bottom line-I am forever and deeply changed. It is hard to say whether going through this while having a baby (and toddler) made it more difficult, or kept me distracted and occupied in a helpful way. Of course it is both, but I certainly wish my children were older and more independent so i didn’t feel like I have missed out on and negatively impacted this precious formative year. Of course I wish I had been given another decade or two before cancer, to see them through much of their childhood and myself settled more securely into adulthood, but that is not the way this life works. At least I had three decades to live without it, as many others don’t. Life is not fair and this terrible, aggressive disease is all around us. And now my eyes and mouth and mind are open wider to everything and everyone, with a new clarity that makes it easier to decide how to spend my precious time.
My first chemo treatment