I started writing these short pieces recently to help me come to terms with living a chronic and terminal illness. I was diagnosed with metastatic breast cancer (stage 4) in August of 2020. Since then I have had several surgeries, two rounds of chemotherapy, and three rounds of radiation treatment. I’m currently stable with a “good prognosis for survivability.”
31 DEC 2023
I’m still here. And that is something to celebrate. The statistical prognosis for Stage4 Cancer survivors averages 5 years post diagnosis. Fortunately, medical advances are increasing survival rates. I’ve been Stage4 for four years now and am looking forward to many more years – because I have to hope. I have things to do and places to see. And I’m as stubborn as the proverbial mule.
As I go into the new year, I hope to self publish my debut novel, put my photography work out for sale, and welcome a new dog into my life. Cancer has slowed me down, but not stopped me.
Despite it all, I am blessed. For all the friends I have made, the support I have received, the wonderful people I have met, thank you. Thank you for being here.
It’s important to have something to work towards when you’re facing a lifetime of progressive disease. There is no cure. Like many others living with chronic illness, I find relief in doing what I can to be productive even if I can’t work a normal job. My writing has become my passion. My photography has become my inspiration.
And I am so very happy to be able to share these things on social media.
As you go into this new year, I hope you will find something you are passionate about and will be able to pursue it for a lifetime.
Many blessings. 💗
07 JAN 2024
I’m tired of doctor appointments. For almost four years I’ve been in to see a doctor at least twice a month. I go because it’s necessary for my treatment, but occasionally it feels futile because there is no cure for Stage 4, just maintenance.
The cancer is sneaky and patient. I consider it almost like a separate person laying in wait to wreak havoc as soon as I am not viligent about the routines keeping me alive.
There is a list of foods to avoid, exercises to do, and precautions to take daily. There are regular blood tests to check my calcium levels, my white blood cell counts, my red blood cell counts, and my tumor markers. Radiology does regular screenings to keep my organs under observation for any new growth. The goal is to keep the cancer dormant for as long as possible.
It’s working – and I’m grateful. But I miss the days of being healthy and pain free. I’m lucky to be here and for that I am also grateful.
14 JAN 2024
When I was first diagnosed, I was devastated about losing a part of my sexual identity to cancer by having a double mastectomy. I was focused on getting back to normal as fast as possible. But that was not going to happen for me.
There’s a lot of pressure to look normal during treatment – wigs, prosthesis breasts, getting your nails done. And there is nothing wrong with that. But I didn’t want to hide the effects of treatment on my body. I was going through a rough time and I was too tired to hide it just to make someone else comfortable. Because cancer is rough on family members too. I get it, but part of the journey is to accept this new reality.
I’ve had time – and therapy – to process this life altering change. After three years of not having breasts, I’ve gotten used to the way I look without them. My favorite part is never having to wear a bra – especially in the heat of a Vegas summer.
I originally wanted reconstructive surgery so I could look like I used to. But an infection that put me in the hospital for 10 days and having to have the “spacer” removed from my left breast changed my mind. I briefly crossed over and came back from death and it was seven months before the tissues on my left side quit oozing and healed up. I have no desire to repeat that experience.
My self image has changed since cancer took my breasts. I’m more comfortable with my body. I’m more accepting of myself. And that’s something I didn’t expect to happen.
21 JAN 2024
My spine sounds like a xylophone when I twist or bend. A trill of tapping. I’m working on composing a percussion piece for joints and spinal column. It’s part of the expected degeneration. I get regular infusion treatments to strengthen my bones.
Right before I started chemotherapy, my back hurt in a constant pain punctuated by sharp bursts of pain from the cancer having migrated to my lumbar spine. It interfered with my daily activities making it impossible to complete tasks. I still can’t sit in a chair for more than 30 minutes.
I gave in and took low dose opiates for a few months, which I didn’t like to do. I’ve seen the results of opiate addiction throughout my career as a correctional officer and don’t want to end up dependent on a mind altering substance. It’s no way to live.
So, what do I take for daily pain management? Acetaminophen. That’s it. It takes the edge off. Heat works well. Gentle stretching sometimes works. But when the pain becomes intolerable, I give myself a break with THC. I’m allergic to THC, but occasional low doses work wonders for pain management. This is obviously not to be construed as medical advice – I’m not a doctor and can’t recommend things.
I’m never entirely pain free, but I’m also not in a foggy state of mind. I’m just stubborn about the idea of being addicted to a substance. But not completely stubborn. If it gets to the point I need something stronger, I’m not going to silently suffer. Because there are levels of pain no amount of lifestyle changes, clean eating, exercise, etc. are going to work for. And when I’m at that level, I want to punch anyone who says, “you’ve got this,” or “think positive.”
Because I positively think that these stock phrases are unhelpful when dealing with chronic illness. I know it’s hard to know what to say to someone living with stage4 cancer. I know it’s meant well. But, I think the phrase, “I hope your day improves,” or, “ouch, I’m here to listen if you want to vent,” sound more reasonable. I’m a bit grouchy as I write this piece, but I appreciate you taking the time to read this.
28 JAN 2024
Thank you for reading this series. I share my experience here with Stage4 Cancer because when I was first diagnosed I didn’t have any information on what a person with metastatic breast cancer goes through.
Each cancer story is unique. There is no one right way to fight cancer. I’ve been through surgeries, chemotherapy, and radiation treatments. I’m currently on maintenance chemotherapy and an estrogen blocker.
As I’ve journeyed through this process, I’ve changed both physically and mentally. I noticed in myself that there was an initial reaction of “I can beat this.” Then, reality came up and smacked me around a bit. I will be on some form of chemotherapy for the rest of my life. My body will degenerate more rapidly than I want it to. The cancer will never go away; it simply lies dormant, waiting for conditions to be right so it can take over.
And I am at peace with my new reality. It’s not what I wanted. But I’m living my best possible life and no longer worried about the future. The worst has happened – and I’m dancing in the storm. It’s an odd sort of blessing which has brought me closer to the people I love and given me courage to face anything. And, for that, I am grateful.
Many blessings 💗
All caught up!!
MercyJ Writes 