Chemo….it’s so ironic

So the months of April and May were very similar to his Ewings Sarcoma Treatment…

He’d check in and receive heavy duty chemo…heavy enough that it had to be inpatient, because it would leave his immune system compromised too much to be in the outside world. He could have select visitors… please come healthy, not even the sniffles… and if you are under 16 you have to sign a waiver at the front desk checking off that you’ve had no fever, vomit, or other such illness in the past 24 hours. Use hand sanitizer before you go in, wash your hands when you get in, hold your breath if you need to cough, and leave the room to sneeze please.  (The coughing, sneezing part weren’t spoken rules, but we all followed them). The other screening was IF he felt up to visitors. He was pretty good about being honest about that and sometimes it was obvious that socializing wasn’t on his radar.

His Nini, my mom, was my pinch-hitter caregiver during these chemo stays….or rather, I was hers. I would do a few evenings a week and covered the weekends and she would be there during many of the weekdays if he needed care. She was an invaluable resource with her medical backround (she’s the “call at 4-in-the-morning” because someone’s sick and “do we really need to see a doctor” person in our family.) She helped me personally, as well, when I still had two teens at home and a full time job. Thanks to her we were able to keep home life fairly “normal” for the kids and my job stable during the chemo months. We really were a team. It brings me to tears as I write this thinking of her devotion to her grandson. Im forever grateful and I know he was too.

It was a dance with him, though, being that he was 25 and an independent spirit, as to if our presence and help was needed or wanted. There was a fine line between his being ill enough to need care or well enough to take care of himself–which he wanted to do, so if he could, we’d back off.  It was usually evident it was time to go home from full time or most-of-the-time caregiving from the tone in his voice or a look or even pulling away when we tried to assist him. Seeing the “I can do it” of his will break through, though, was fantastic. I remember feeling relieved when he would get irritated or it was obvious he was ready to be alone, because that meant he was on his way to feeling better. (When he was well, Cory was a man who enjoyed a healthy amount of solitude–this is the guy who spent 6 weeks riding a bicycle alone across the country and loved exploring hiking and nature on his own any chance he got, so doting and dependence weren’t his favorite thing.)He was fiercely polite, though, so one of my biggest focus’ during his treatment, aside from being there and caretaking when he needed it, was reading him and respecting his independent adulthood when he didn’t need help. He already had to give up so much of his life just to be treated, and in a Childrens Hospital at that.

If he didn’t need “care” and was feeling pretty good just waiting to get his immunity sea-legs back, the family —Me, Dave, Nini, Grandpa, Grandma, Jimmy&friends, or Dad when he was in town (thankfully Charlie has an office in Cincinnati)– one or two at a time, would stop in and pay visits and play a game or just chat.  We’d always call first or make plans, like he was just in an apartment somewhere. And Jimmy would always visit with friends way too late where he would have to get special permission and negotiate getting in.  I was amused by that and Cory enjoyed it too, probably because it was kind of like life on the outside…hanging with your peers @ 11:30 at night, laughing it up…The oncology nurses were always great about making this happen for Cory. I think they had a special empathy for his situation because of their being so close in age to him. When Tyler and Hannah could come, we’d have Forced Family Fun games or a movie night or Cory and Ty would play some video games. Most times during chemo weeks or right after chemo he wasn’t up for any of that, but when he was recuperating and just passing time until his magic immunity numbers came up, he could manage an hour or two with the whole gang before he got tired.  The most seemingly benign moments, were, in hindsight, the most precious. Time.

He invariably asked for whomever was coming to bring non-hospital food in. Of course, we were happy to oblige and feel like we were “doing something” in a situation where we couldnt “do” much. Sometimes he would eat it and sometimes he wouldn’t. He described that his mind constantly wanted Subway, or Arby’s, or Chipolte….but often it was just an emotional affair, because when it was in front of him,  his body couldnt follow through. Those were the Good Days—the 7 days. All pain was on a scale of 1-10 in the hospital. His 8-9 days were definitely those spent outof the hospital.

Then there were the Bad Days. Chemo is everything you hear it is. Nausea, vomiting, fatigue, and compromised immunity are just a nutshell of the symptoms. He was on a now-and-then effective regimin of  about 4 medications to just keep the vomiting at bay.  If one didn’t work, they’d add another, and so on. A lot of times nothing worked.  If he got to the vomiting stage, it was constant, sometimes for hours or full days or nights. Even the oncology team seemed baffled at times at the inability to find a solution. We saw a lot of Baffled when it came to Cory’s journey….

We had a stack of 15 pans and stacks of washcloths. He would assume the position, sitting up, legs crossed…because he knew it would last awhile. I would do The Rotation. Remove the used pan, put a new one in his lap, hand him a warm washcloth, place in the bathroom so nurses could measure the amount, wet a new washcloth. Again and again and again and again. We wouldn’t talk, we knew the drill from last time around the Chemo Block. I used to hold his head when he was a little boy, now I just placed a hand on his back.  There were times I wasn’t sure how his body could keep doing it, heaving and heaving.  He wouldn’t complain. He’d just endure.

At this juncture, I knew, but was so sad that my Mom Super-Powers were out-grown and gone. Couldn’t kiss or put a Band-Aid on any of this.

I also knew, at this juncture, that Cory Jay Powell, was a much stronger person than any of my super-powers ever were.

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