After two diagnoses of acute myeloid leukemia, intense chemo and a bone marrow transplant, I’ve learned some things that helped me along the way.
For those who are going into chemotherapy treatment, or are already actively in treatment, or are caring for someone in treatment. I thought I would share some random tips that may possibly help you get through the sullen hours and moments of sickness.
Disclaimer: I am not a doctor! These tips are personal suggestions. I believe you readers are wise enough to know to take direction and counsel from a doctor. You can check with your medical team about using and of these ideas. Granted, some are just common sense.
I had acute myeloid leukemia (AML) twice. The recurrence of AML in 2020 resulted in a bone marrow transplant four months after intense chemo induction and took a good year for me to recover.
TIP 1: Drink plenty of water, but also try to walk around and prop up your feet when you are in bed.
If you notice unusual thicknesses of your limbs and joints, drink slower. I learned that it’s not fun to have liquids removed.
I craved ice water. Multiple “Big Gulp” style cups were brought in constantly. Water was the most wonderful thing in the universe.
Then my ankles ballooned to the size of aspen tree trunks and my weight went up at least 20 pounds. Most people lose weight during chemo, but I became roly-poly. The medical team decided to take away liquids and then propped my feet on a pillow. I had a temper tantrum, scolding nurses for withholding my life-sustaining water.
I contorted my head to imbibe from the tap. I was caught.
TIP 2: Use lemon juice on food.
Food started to taste like aluminum for me. This is a common side effect from chemo. I did not know this during my treatment, but later another patient shared that lemon juice added to food is apparently helpful.
TIP 3: Eat.
Plug your nose if you must. There are times when food seems repulsive, but your body needs nutrients.
TIP 4: Drinkprotein in a juice form, if possible.
Eventually, my weight dropped significantly. I wasn’t hungry, and I abhorred the taste of food. I also had ugly, bulbous mouth sores. The staff would beg me to “eat anything!” They encouraged me to drink the Boost milkshakes, but I found that they were too sweet, too rich and tasted like metal.
In recovery, a friend of mine turned me on to a new JUICE form of protein. This is not a product sponsored endorsement, but when I tried the SeeQ protein drinks, I was elated. They go down like Kool-Aid, yet I’m getting 22g of protein in every glass. There are other brands providing juice protein drinks as well. I wish I had known about this product when I was in the hospital. It might not have tasted as good as it does now, but it might have been easier to drink.
TIP 5: Enjoy light exercise and use your physical therapist.
If you have time before you start treatment, try to gain muscle mass. When you start chemo, try to keep up with some light muscle-building exercises. When I left the hospital to convalesce from all the chemo and the bone marrow transplant, I realized that I had almost no strength.
Right before my diagnoses, (I can’t believe I had to make that plural) I was a daily walker. I was 55 years old and 115 pounds before I had my bone marrow transplant. I could lift 10-pound dumbbells 50 times. Not super athletic, but I felt it was OK.
Shortly after induction started, and nausea said hello, I wanted to sleep during all the yucky phases. That plan did not work; too many vitalchecks, room-cleanings, doctor visits, mealtimes, family visitsand medicinal interventions. Even though I was in bed, I was awake a lot. My sedentary preference, lack of appetite, diarrhea and vomiting, and night sweating, eventually gave rise to a scrawny 96 pounder.
In my hospital room, there was sit-and-bike thingamajig under a counter. To me, it was a sculpture.
The bone marrow transplant ward was a U-shape; two longish hallways were connected by a nurse station at one end. We were instructed to walk the hallways at least 20 times a day. We used a whiteboard on the front of our doors to mark out laps. Nurses questioned us about our progress.
Then the physical therapist arrived — an Ellen DeGeneres doppelganger.
At this point, if you asked me to squat, I would go down, then plop. There was no coming-back-up. You need me to stand? Hands and knees on the ground, push up with the hands, grab a railing, lift one knee at a time, elongate, then rest. My femur muscles were like slices of prosciutto.
The physical therapist had my limp noodle body do repetitive little movements to help strengthen my muscles. It was laughable to outsiders, seemingly insurmountable to me.
When I got home, I was prescribed continuing physical therapy. I worked up a sweat with those rubber-bandy- thingies that go around your ankles while you do a “monster walk.”
I am now almost three years post-transplant, and I just got a real bike. I won’t go with anybody because I pedal in weird spurts.I do squats in the kitchen while I wait for my coffee to brew. I stretch constantly. I do light weights. I’m al dente.
TIP 6: Be steady.
Please be extra careful when walking anywhere. I was weak. I tripped and was put on bed alert. This was no fun. I was not allowed to get out of my bed alone. An alarm goes off if you try to be sneaky and pee by yourself.
TIP 7: Be occupied.
When I did my hall walks, I noticed that the TV was on in most rooms, even if the patient was sleeping. I understood. But here’s the thing: time seemed to go by faster with the TV off.
I had my first ever water-coloring set. I never painted in my adult life. I am telling you, drawing and painting is a soothing and enjoyable hobby. I will be forever grateful to the generous water-color-set- gifting-lady from the rooms of AA whose name I cannot remember. Thank you!
TIP 8: Know This: This, too, shall pass.
Even in your most sullen and anguished moments, say to yourself, “This too shall pass.” Because it does!
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