Another patient advocate living with Stage IV Metastatic Breast Cancer (MBC) wrote a post on Facebook a while back about all the things we lose to MBC. She labeled these things “little deaths” to distinguish these losses from one’s eventual death, but also, I believe, to drive home the point that we must grieve the losses in the same way as one grieves the death of a person. Utilizing this thought process has helped me view the things that I’ve lost through a lens that helps me to properly categorize and grieve the losses that often compound over time. For me, I’ve noticed that if I’m not intentional about naming and grieving these devastating losses, the pain builds up and escapes sideways, usually on a person who is providing me less than stellar service in a medical office.
I’ve learned that we never really get over grief.
Grief, once it becomes our “dark companion,” is there to stay.
What we can each learn to do, I’ve found, is carry it better, assimilate it better, use it better, and then learn how to do that all over again the next day.
Because writing is a huge part of how I carry things, how I work out my feelings, how I achieve a cathartic release, I’ve decided today to write about some of the “little deaths” that I carry with me, that color how I view the world, that often weigh me down so completely that it feels like drowning in sorrow. I never understood that phrase before MBC and now I learn more and more every day how “little deaths” can choke the life and meaning out of now, if we let them.
One of the first little deaths when I heard the words “you have breast cancer,” was the death of my confidence in my health. When I was first diagnosed in 2017, I was 38. I was tandem breastfeeding my two boys and juggling the requirements of a busy business, the aforementioned children, and all the details that come with those things. Other than the fertility issues that we were able to deal with and my two (2) childbirth experiences that resulted in two (2) C-sections, I’d never really experienced dependence on the medical system for any period of time. Learning how to live while tethered to my medical team has been a sobering reality and adjusting to the worry and anxiety that comes with a compromised immune system hits me hard regularly.
The second little death came a few minutes later when my breast surgeon asked about our plans for a third child. Our second son was about to turn two (2), the same age his older brother was when we went back to the fertility doctor to get pregnant for a second time, so we’d been kicking around the idea of a third child. Knowing that I would be going through such a significant health issue (and we only knew I was Stage II at that time), the decision was made, no third child born from my womb. At the time, it was the logical choice, really the only choice we could make under the circumstances. The emotional cost of that loss hit me that night, as we worked to wean the boys, much to their consternation.
That was the third little death, the end of my breastfeeding relationship with my boys. Our eldest was almost four (4) and we’d discussed how he would stop nursing on his birthday. He really only liked to comfort nurse to sleep anyway and four (4) seemed like a good age to transition him away from nursing. It wasn’t too hard to explain the situation to him since I’d been leaking blood and milk from the biopsied sites for a few weeks anyway and he knew something was up. He accepted the change without too much fuss. Our youngest, about to turn two (2), was another matter entirely. We all endured him wailing until exhausted for about two (2) weeks and he still prefers to sleep with Daddy. A fundamental bond that I’d built with him since he came out of my body was tragically broken and is still affected to this day.
The fourth little death, which is ongoing and often compounds exponentially, was the loss of my independence. Suddenly, tasks that I would complete without a second thought were impossible, sometimes physically, sometimes mentally, sometimes emotionally. My energy and abilities became finite (or more finite) and I needed help. I am still adjusting to this, still adjusting to pacing myself, to spending my spoons wisely, to not over-committing, to saying no, to understanding when I’ve over-extended myself and will crash later.
The fifth little death was my career, something I spent decades planning for and building. At first, we thought that I had Stage II breast cancer and that I would make it through treatment and, as my first medical oncologist shared with us, something else would kill me when I was much older. A few months later, in the middle of chemotherapy, we learned that I’d actually been Stage IV from the beginning. At that appointment, my first medical oncologist said, quite directly, that this diagnosis would cause my death, that there was no cure, that we’d be working to keep the cancer at bay for as long as humanly possible, but that my life expectancy had shrunk to a handful of years. About a week later, we began the necessary arrangements to transition my clients and employees to other law firms, to get out of leases and contracts and agreements, to dismantle the fruit of years of blood, sweat and tears. We finally filed the last tax return a few months ago, for 2020, the agreement for the website domain finally expired and my work email finally stopped working. It was a long, slow little death, partially because I struggled to actually finish and put the law firm to bed.
The sixth little death was my mobility. Within a week of discovering that I’d been stage IV from the beginning and that the breast cancer that started in my breast had spread to all of my bones, I was in surgery to have titanium rods inserted into both femurs. Both of my femurs were quite literally covered in metasteses (mets) and my right femur was one bad step from shattering inside my leg. I woke up from the surgery in intense pain, my body already compromised by chemo, my bald head shiny and cold, and since then, my ability to move has never been the same. It took a great deal of medication, physical therapy and yoga and massages and gait re-training and medication and epsom salt baths and pretty much sheer determination to get to the level I’m at now. I have degenerative changes and arthritis and chronic inflammation and bursitis and heterotrophic ossification and a whole host of other challenges to my ability to move since that surgery; at the same time, my bone never shattered and now it never will.
The seventh little death are all the other physical changes and ramifications. I had an oncoplasty reduction on my breasts, which included a lumpectomy, a lift, and adjustments to make them look symmetrical and ended up with a divot in my left breast, right at where my cleavage was, plus some interesting scars that can become visible at the oddest times. The net effect is pretty ugly. I’d lost all the hair on my body during chemotherapy and it hasn’t grown back the same — while I welcome the fact that I don’t have to shave certain parts of my body anymore since those hairs never grew back the same, the fact that my once thick hair is now super thin annoys me regularly, like all the time. The lady who cuts my hair says that I just have the same thin hair that so many others have, instead of the thick hair I’ve had my entire life. Removing my ovaries and taking medication to suppress the remaining estrogen in my body means I entered full blown menopause all at once and now have to deal with all of the side effects that brings. I’m sure there are more, these are just the ones top of mind as I sit here typing.
The eighth little death was/is the attack on my dignity as a human being at the hands of the U.S. medical system. I’ve written quite a bit about those experiences, those times that I am moved to tears when treated as if I’m subhuman, when I’m denied even the basic autonomy of being consulted about when I am to show up for an appointment, when the times my skin is pierced by needles is summarily doubled without regard for that impact on forever patients, when my care is disrupted, denied, changed, extended by heartless, soulless administrators who have no connection to the outcomes of their decisions. I have negotiated, cajoled, raged, yelled, cried, threatened, placated, bribed, and used every connection I and my family can muster to manage these experiences. So much energy and so many spoons have been spent in attempting to find solutions, to share my stories, to advocate, and yes, to shame, the people who make decisions on my behalf and on behalf of others, many times in direct violation of the law. The experience of a forever patient is the most difficult thing I’ve ever experienced and the trauma compounds every single time I have to see someone or get a letter or get a call or an email or a text.
The ninth little death is the affect that my diagnosis has had on those around me. I had no idea how many of my relationships were built solely on what I brought to the table. When I could no longer provide what was expected, those people vanished or picked fights aimed at my vulnerabilities due to my diagnosis or the other little deaths I’ve described in this post. That has been devastating when I’m at my lowest.
The tenth little death is my future. This encompasses so many things like seeing my boys (2 and 4 at my official MBC diagnosis) grow up, get married, and enter into adulthood; getting to see and hold my grandchildren or great-grandchildren; pursuing a career I truly loved; growing old with my husband; reaping the benefits of our careful saving for retirement that has simply become dealing with my medical bills and ongoing treatment; traveling wherever I’d like; etc. My future is now compressed into three (3) months intervals where we wait to find out if I’ll be able to live a little longer.
The eleventh little death, is the sure knowledge that my death will harm those who love me. We live with my parents and I see the toll it has taken on them to adjust their retirement to encompass my changed life. My husband moved in with his in-laws and changed cities and adjusted his job to meet my needs. My boys, they don’t remember when I didn’t have breast cancer, when I wasn’t grappling with a terminal diagnosis. My suffering and my death will hurt all of these precious souls and my heart breaks regularly.
As I think and write about these subjects, I keep finding it harder and harder to consider any of these issues all that “little.” No, I’m #NotDeadYet, but sometimes all of these losses add up to something much bigger, especially when you add them all together. No wonder sometimes I feel so flattened that it doesn’t seem worth it to get out of bed. No, I’m not thinking about harming myself, I’d NEVER do ANYTHING to lose time with my children, but the weight of all of this is sometimes just too much for my fragile heart.