Returning to Chemo
After nearly five years since my de novo MBC diagnosis, I find myself facing progression to my liver and returning to IV chemotherapy combined with oral therapy.
When I was initially misdiagnosed as stage II back in 2017, I did undergo the "typical" treatment of the red devil and cytoxin for 4 cycles, during which we discovered that I'd actually been stage IV from the beginning.
The silver lining then was that I was bone only. I have clung to the idea that no one dies of bone mets since then. Can't cling to that any longer and losing that lifeboat of sorts has been daunting.
During the last few months, as we have scrambled to get all the ducks in a row for new treatments and side effects, I have found myself pondering the differences between facing IV chemo back in 2017 when I thought it was a season to be endured and now when I see a very different path. It is an oddly new, yet familiar experience, filled with emotional and physical triggers.
How chemotherapy is different this time
The first major difference I see is that I have a LOT more information this time.
In 2017, I did read a lot, but I only had so much capacity for retaining all of the information and frankly mostly just had access to information created by my doctor, not anyone who had actually gone through the treatment since we were trying to keep my diagnosis and treatment under wraps for the sake of my business.
We were truly in information overload at that point. Now, I've had a lot of years and a lot of experience watching others go through various regimens. The only caveat here is that I'm a little too aware of the rare side effects and have to remind myself not to dwell on all the worst possible things.
Learning from others' MBC experience
The second difference is that my circle is now full of people who have had or are currently experiencing cancer. I have nothing bad to say about my initial experience in terms of my medical team, they did their best and it was their efforts that uncovered that I was actually stage IV. However, learning and talking to others who have had the same experiences is exponentially more valuable.
The care packages I've gotten in the mail and the notes/cards from dear friends have buoyed my flagging spirits when I needed them most. Those of us who have undergone treatments know far more than the medical professionals about what it is actually like.
Knowing MBC is a marathon
The third difference is that I am almost too aware that MBC is a marathon whereas early-stage treatment is much more like a shorter race (not really a sprint, but definitely shorter in terms of treatment).
Back in 2017, much of the effort I marshaled was fueled by adrenaline and that kept me sharp and "up" to get through the initial struggles. We didn't make a lot of changes and we focused on the endpoint.
Now, knowing that IV chemotherapy is a waypoint, just another stop in the ever-changing treatment regimens I'll endure while I'm alive, I know that I can't utilize adrenaline to get through this.
This chemo experience requires different energy, different support, different goals and a different focus.
The small voice in my mind
The fourth difference is that small voice in the back of my mind that whispers that this progression, this treatment, this is the beginning of the end.
It didn't take long for me to see and experience the decline and death of others in the MBC Community after I was diagnosed, usually marked by undergoing more and more harsh treatments.
The American Cancer Society estimates that it is only about 28 percent of us that reach the five 5 year mark after an MBC diagnosis and we lose about 42,000 men and women in the US every year to MBC. I'll be one of those at some point and the return to a harsher treatment is definitely not a good sign.1
My body has changed
The fifth difference is that I've been in treatment ever since the last time I did chemo. My body isn't the same. I'm older in years (38 at diagnosis and I'll turn 44 here in 2022) and I feel even older than that. Years of endocrine therapy and hormonal therapy have changed the make-up of my bones and skin and organs.
I've worked hard to supplement and address those depletions, but I'm not the same and I'm not weathering the side effects in the same way either.
If you've gotten this far in my musings about the differences in returning to chemo, I suspect you are thinking that my outlook is pretty bleak.
I can't change the facts and the circumstances that have led me to this point. Those same facts and circumstances have led to my ability to handle something this daunting. I have very different tools this time.
Where there's is life, there is hope
While I can't deny that I have my moments and that this rollercoaster of living with MBC has some low points; and yet, my current mantra is... where there's is life, there is hope.
While enduring IV chemotherapy is not for the faint of heart and I'm not enjoying myself much, it is a necessary tool to get a handle on the cancer cells that have been merrily proliferating since the last two treatments failed me.
It is a season and it is a waypoint. I am plotting out the next treatment options with my doctors and am seeking out second opinions to ensure that we have Plan A, B, C, and maybe D waiting in the wings.
This is what living with MBC looks like at times.
Do you find it easy to advocate for yourself?