As a person who formally had cancer (in-remission for 7 days now), my normal is slightly off-kilter. My axises no longer align the way they used to. What used to be simple decisions now are carefully planned tactical executions. Everything now gets a cost-benefit analysis. Is this food worth the units of insulin? Is this restaurant “clean” enough for me to feel comfortable? Does this waitress understand I can’t have anything fresh on my plate and that also means I can’t have a lemon wedge in my iced tea and yes I can tell when there is pulp on the glass, so I know you just took if off, but I want a new “clean” glass, sorry I thought I was pretty clear.
To note, I did go to Cantina Feliz the other night. Tim and Brian took care of me. Tim took the time to make sure my plates didn’t have any fresh garnish so I could enjoy my dinner, anxiety free and Brian was a great host as usual. Their black bass is one of the best meals I have ever eaten… Highly recommend it.
Depending on how neurotic I am feeling that day the list goes on and on… is this cough an infection, allergies or just a change in environments. Is what I’m touching clean, can/should I rub Purell on it? (Case in point, I purell’d a straw at a restaurant the other day, it seemed like the lessor of two evils) Like I said, depending on how neurotic I feel the list can get pretty intense. Today, I asked the doctor if when I go to restaurants and order a sandwich/hamburger, should I bring my own lettuce and tomatoes in a zip lock bag… she almost strangled me. Imagine dealing with this person everyday. I can only imagine what that must be like. Thank you Jenna for dealing with me while I continue to adjust, I know I have been an ass some days.
Before I was diagnosed with Leukemia, I was what I like to call an organized mess. I also like to be in control of situations, planning them. I prefer to drive rather then being a passenger. Professionally it works for me as well, it allows me to be good at my job. I know where stuff is, or at least its general vicinity. Not quite a hoarder/control freak, but close. My clutter tends to end up in carefully orchestrated piles then into boxes to keep it out of sight. We have now lived in the house for almost 2 years, yet I haven’t let us hang any of our artwork, I don’t want to put holes in the new freshly painted walls.
With all this extra time while I am recovering from 31 days of being poisoned (thankfully), I am finding it therapeutic to get rid of some of the clutter. At night I think of little projects I can take on the next day, unfortunately that exacerbates my insomnia. Then over the next few days, I got thru a box of crap, or pick up one of those new projects/chores to do. Just recently I found piles of clothes I haven’t wore in almost 2 years at the top of a closet. Time to call Purple Heart for a pick-up; it’s been 2 years in the making. Next up: Interior design, time to mess up the walls a bit.
Really is all related to trying to get some control back, since I was stripped of all control when I was told I had APL. I didn’t really know anything about leukemia except what I saw on TV. It was sick kids and/or elderly people, not young adults, thirty-sometimes getting their lives turned upside down in an instant. Lucky for me, I got the subset only 10% of AML diagnosed patients get, it’s also the most treatable and curable. Again, lucky for me, the treatments have been effective with little to no side effects. The only thing I notice is some numbness and tingling in my feet. From what I have been told, this is a side effect of the ATO (arsenic tri-oxide).
So last week at my doctor’s appointment and reiterated to me today when I saw Dr. Kasner, she insisted that I take back control. My labs results came back as expected if not even better for being a week out of chemo. My WBC is rising, as it should. My neutrophils are rising as expected. I have an immune system again. My ANC is high enough for me to feel like I have some control again. I am not at the mercy of handshakes, sneezes, fresh fruits and veggies. Small things like eating a salad are a big deal now a days here. When we have been going out, I feel the need to wipe down the tables/chair/movie seats with Clorox wipes, since those things are filthy. Small things I can control.
Each day I make some step steps to get back to my new normal. Over time, I do hope to find my way back to normal, whatever that becomes. That might take a while, but each day I get a little closer.
Funny thing about the way my treatment works, in 2 weeks when I begin consolidation; they plan on wiping out my immune system again, so here we go, but this time, I will have a better skill set to deal with that “normal”
Waiting for the time when I can finally say, that this has all been wonderful but now I’m on my way