My Rollercoaster Ride With Cancer
Last updated: September 2019
Hi. My name is Barbara and this is my story and my journey, thus far with cancer. The past three years have been a rollercoaster ride for sure. Anyone who knows me, knows that I loathe rollercoasters.
The "puzzle" patient
Although I may look fine, and tend to maintain a sense of humor, my cancer diagnosis, 5 different types of chemo in less than a year, and a stem cell transplant this past December have turned this household upside down. I was diagnosed between 2016 - 2017 with LGL leukemia, t - cell lymphoma, multiple myeloma, and amyloidosis of the kidneys. The amyloidosis being extremely rare according to my hematologist, due to the fact that I possess both lambda light and heavy chain, when usually only lambda light is present. My "team" refer to me as their "puzzle" patient.
One thing I've tried to hold secret is that I have been known to beat myself up emotionally for having these cancers and all that they prevent me from being WHO and WHAT I used to be. I also can get grumpy and frustrated, maybe even angry with relatives and friends who to this day have neglected to learn or read about the particulars of my illnesses, despite how passionately I've tried to explain, and to not read any literature I've shared with them or to allow me to educate them on what exactly a stem cell transplant entails.
No, it's not a several week visit to the hospital, and then when you are released, one is "all better"! What most don't understand is that you don't get better and resume life as we once knew it, when the truth for many of us, is that we live with an unpredictability that has its own agenda. A good day here and there, followed by not so good to downright miserable days. This has become our lives. Trust me, I'm by no means indulging in a pity party, I'm simply "cleansing my vessel".
Where are you, Faith?
Frustration sets in when memories of what used to be creep into my mind. I used to be so laid-back and very spiritual. Now, I feel the need to search for what once was. And in the darkest moments, such as the wee hours of the morning, when all is dark and silent, those thoughts show up, precise and the irrational, invading my sleep and my mind plays the game of tricks.
Telling me that I am no longer the best person I can be, and thoughts of my mortality dance inside my brain. Thoughts of how SHE got lost along this journey of debilitating fatigue, nausea, vomiting and chemo sickness. Sickness to the point of being taken off of all treatment as the chemo was sucking the life from me, despite the fact that a few leukemia cells have found their way back. So we play the watch and wait game, as my team feels I could not survive another stem cell transplant. And after the game of tricks, I anxiously wait for the light of day.
I used to be the yoga queen, my home was immaculate and I took pride in being somewhat of a gourmet cook. Last night my husband had cereal for dinner after a hard day of work. Meanwhile, I wasn't able to keep anything down or in. I always wanted to be a size 6.... be careful what you wish for.
I beat myself up for having something I have no control over, again the irrational thoughts. I'm trying to accept and cut myself some slack for going from a once vibrant woman to trying to find the strength to get up and shower, let alone get dressed and get out.
People might say "let me know if there's anything I can do". What folks need to know is that most cancer patients will never ask for anything. If you have a loved one who is struggling with cancer, find it in your heart to not ask, just DO. My gift to myself is to try, for today, to remember that I didn't choose these cancers, they chose me, and the vibrant woman, the warrior, still exists somewhere in the depths of this alternative reality, and like a Phoenix will once more, rise again.
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