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A big bad day in the cancerhood

“Take this referral. Go see your oncologist, get the x-rays and come back.”

In one visit, my doctor had solved a problem my oncologist was still puzzling over. I’ve had an exhausting, productive cough that is so strong, it often makes me toot my butt trumpet. My oncologist wanted to send me for chest x-rays and PET scans of my chest.

But with my insurance, approval was required to get either.

 

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So my oncologist ordered the PET scans and two weeks later, I’d now had the cough for a total of 7 weeks.

It started out like this in the first two weeks so I refused antibiotics.

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And now it’s slightly similar to having the plague.

I’m very lucky in that my oncologist has a person on staff that works things out with my insurance carrier, keeping tabs and sending all the nitpicky nonsense they ask for before you’re allowed to say, wipe your ass.

On a whim, I decided to see if I could get my primary care physician to work on the issue separately.

Sure enough, she knew a loophole that allowed me to go for my x-ray immediately. Turns out, as my primary doctor, there are things she can send me for and get same-day results.

“Wait, I thought you said to come back next week?”

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I was exhausted from not getting more than two hours sleep since Sunday. And easily confused by simple sentences. It was now Tuesday, a week after my chemo and targeted therapy treatments.

I was past the detox phase and well into the my-body’s-painful-revenge stage. Without proper sleep, life was a waking nightmare.

Everything hurt. But instead of a deep, tiring, heavy soreness that could be addressed  with medication, meditation, yoga and limiting activity, it was the kind of yelping, stabbing sharp pain that only relented if I held my body a certain way or didn’t move at all.

And this lady has just told me that not only did I need to move more than the 2 hours I planned on this morning, I’d have to do almost 5 times the activity I’d allow for myself when I was only dealing with the chronic pain issues I had before the Lymphoma.

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I almost asked my father to find a place where we could rent a wheelchair.

(Dad is my champion transporter to all my non-chemo doctor appointments, which is another hero caregiver story for another day.)

“Yes, but also come back today and I can give you the results.” If I came back today, the doctor would be able to tell me things like whether there was fluid in my lungs or if there was any inflammation present.

Extra helpful information if you have asthma when you have a bad cough. It wouldn’t tell us whether the two masses in my chest had shrunk. But the information we’d get might solve the immediate problem.

If anything kills me it’ll be days like this

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There used to be this prevailing wisdom that it wasn’t the cancer that could kill you, it was complications from the treatment.

Even today, people claim that as a reason you shouldn’t get chemo.

Because without you knowing anything about my medical background, it’s suddenly okay for you to advise me about my health just because I’ve decided to try to help people by sharing my struggle? Without even bothering to find out what I want or asking my permission?

Which is just a whole other Medium-length essay I won’t get into today.

Anyway… I’m of the belief that your attitude and approach to life in general is the biggest factor under your control. Not to say life is all sunshine and rainbows, or that if poor people would just focus on how beautiful sunrises are instead of the constant river of crisis they find themselves in, that they’d all be millionaires.

Manifesting a great life can only happen once you’re out of survival mode. If you can’t solve “how do I eat” you won’t live long enough to manifest shit.

Conversely, the power of positive thinking and maintaining a positive outlook are real things to me.

When you’re angry, you focus on different things than you do when you’re content. Different changes happen in your body too, which is something I think most people fail to understand. So I never wanted to be one of those people whose downfall was the stress they put on themselves.

But on this day I learned that you can run out of rainbows.

The experience of being sick ironically can make you sicker

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So here I was, exhausted, on no sleep, barely able to stand even with my cane and my father’s arm. On the one hand, overjoyed at the prospect of finding out enough about what was wrong with me for the treatment of it to change.

On the other, knowing that instead of two quick stops today, we now had to make at least at least five, and two of them would include sitting around waiting.

Here’s how the rest of the day went.

After leaving my primary doctor, we went to the x-ray facility. It was closer and my oncology appointment wasn’t for thirty more minutes.

The wait there was an hour for walk ins. I asked if we could check in, go do my blood test with the oncologist and come back, as Dr. Wang’s office was literally in the next office building.

Dad had figured out by eyeballing me that I was more exhausted than I was even aware of at the time. So even though on a good day I could – and have- walked the half mile from my oncologist to my primary care doctor, on that day he had me wait in the lobby of each building while he got the car. He literally drove me next door.

I savored the short break each time.

Then we went BACK to xray, then to the primary care doctor, got the results, went to the pharmacy, and despite the fact that I was starving? Straight home.

As I collapsed in a heap on the sofa, unable to even go upstairs to my bed, or get myself a drink of water so I could take my medicine, I thought about how unsuited doctor’s offices are to the sick people most likely to be found there. Chairs are uncomfortable. The temperature is usually too cold.

Even the reception is located across the room from the entrance, instead of right next to it so that those of us with less stamina don’t have to make additional back and forth treks.

After going through all of that? My day was just beginning. And it’s those two things that make cancer so hellish. First, what you go through dragging yourself around, stressing yourself out, trying to do the mountains of paperwork- the business of having cancer itself.

And then, the fact that no matter what, there will be things from your regular life that you’ll still be forced to deal with when you are incapacitated.

Work, as an entrepreneur who has already used up all the cushions in place for vacations and health breaks.

Self-care when no one else is home.

You need water and can’t move. Literally. Or you really have to pee but your body hasn’t started working yet.  You want food but can’t cook.

3 thoughts on “A big bad day in the cancerhood

  1. Tinu (hug),

    My heart goes out to you. I would love to do a “Meal Baby” sign up (this is for parents of new kids – but suggest we re-appropriate the software for this.)

    Your lessons about moving through ups and downs and struggles and victories are so amazing. I am glad you are putting this out there – just for the sake of processing it.

    Xoxox and may have some meal questions for you soon.

    Kath

  2. Hi Kathy,

    I didn’t mean to leave the impression that I couldn’t get food until someone came home. It’s the energy vs stamina thing. For example, when I wake up in the morning, I feel the same spark of energy to get up, get dressed and go eat.

    The problem is I don’t have the same stamina. So that energy runs out in about 5 minutes. I have to lay there and do a systems check on my body before I move, which really sucks if I have to pee. But I’m used to that from the chronic pain issues.

    However, that experience has extended into my whole day. So when I got back from the trip, I had to rest from the effort of making it from the car to the house.

    My mother and sister have been pretty good at keeping the type of food and leftovers in the house that I can just heat up, or making meals for me. There’s always fruit here too.

    Thanks for being concerned about me. And thanks for reading my vent. I think it’s important for me to include what the rough days are like, for the people who may read this on the web or in book form. Things are rough sometimes but they also end at some point, you know?

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