On June 24, 2015, the night before my doctor appointment, I wrote this page-long list of how I live my life with all the life-changing permanent cancer treatment side effects. The aim was to show my bone marrow transplant doctor the next day how I really live, since he only sees the medical treatment side of things and not a patient’s actual daily life:
Don’t let the positive attitude fool you. I deal with health problems every hour of every day. Life is so hard. I think someone without the family & friends support like I have, as well as my faith in God, would’ve committed suicide by now with all the stressful stuff I am forced to face every single day.
Ÿ I lost 5 pounds within the last 3 weeks for my knees because I’m absolutely terrified of knee replacement surgery; my left knee, by far the worse of the two, needs to be replaced & I’ve only heard horror stories about knee surgeries from people who’ve had them. I’m too scared to eat a lot & put damaging extra pressure on bad joints.
Ÿ My overall energy level is severely decreased, so getting through each day is a challenge & by the time the weekend comes, I’m totally exhausted.
Ÿ This lady I know in Florida just last week sent me a discouraging & hopeless article about chemotherapy & radiation still presenting negative effects to your heart & other organs 3 decades after cancer treatment ended, saying in so many words I can only expect my life to get worse.
Ÿ My sleep is interrupted at least 3 times every night to use the bathroom, ever since I was a teenager & cancer drugs forever ruined my bladder.
Ÿ I use preservative-free eyedrops a few times every hour for my chronically dry eyes as a result of cancer treatment, when my specially made Prose lenses, which only last for 7 hours at the most, are not in my eyes.
Ÿ I eat very carefully, cutting out “fatty, greasy, fried & sugary” foods like I was advised by my primary care doctor, to not disturb my chronic pancreatitis that I deal with as another side effect of cancer treatment.
Ÿ I cut out all Starbucks, which used to be a really fun treat, as well as chocolate, & the painkiller Motrin, after I was advised to do so by my primary care physician recently because they can cause my painful ulcers, again caused by damaging cancer treatment, to return.
Ÿ Exercising on my recumbent exercise bike is now a daily activity as I try to strengthen my leg muscles to compensate for both of my bum knees.
Ÿ I deal with painful joints including my left wrist with Avascular Necrosis, which burns with pain all down my forearm, every couple days even though I always wear my orthotics wrist cast whenever I’m lifting something, like my Kindle to read.
Ÿ Walking anywhere, inside or outside, presents a huge risk because having no balance on my brain stem from cancer treatment makes every move, even with my 4-point cane, dangerous (a previous fall from losing my balance gave me a non-displaced fracture in my right hip bone).
Ÿ Besides brushing & flossing, to prevent my now chronically dry mouth due to cancer treatment from getting cavities, I use a dry mouth mouthwash every morning & night, except for 3 mornings when I swish coconut oil for 20 minutes to kill toxins in my dry mouth; I use prescribed “MI” paste on my gums every evening to try to maintain oral health; Xylimelts overnight to produce saliva while I sleep; & “Spry Oral Mist Spray” with xylitol that I keep in my purse to moisturize my dry mouth when I’m out.
Ÿ I wear an orthotics cast every day in the winter under my long pants to protect my weakened right foot with drop foot & ankle suffering from Avascular Necrosis from rolling, which would cause even more damage making me too injured to walk.