Life’s Parallel Moments

Before starting this post, I felt the urge to get Cory’s journal from his biking trip.  I like to think the urges are him or God….guiding me, with me as I write, since this blog is obviously focused on him and his last 6 months of life. So, I paid attention to the urge and opened it. “The Wonderful Adventures of Cory (a collection of thoughts)” He wrote on the inside of the front cover…the “title”.

How appropriate is this journal entry from him at the beginning of his bicycle journey— at this point in his leukemia journey story we are at June-ish of 2013…cancer Again, chemo Again, Needing a match, Needing a bone marrow transplant…

“Day ZERO 9/5/09–I feel more unprepared than ever…..It’s really strange to think that I only decided to do this a week ago and it’s already happening. It’s also weird that a week ago I didn’t have anything I needed for this immense journey…. I have absolutely no idea how any of this is going to work out….what I’m going to eat every day, where I will sleep…I don’t even have a tent at this point. None of that concerns me though, for some reason. It’s like the unknowns are feeding me. I know that I have what it takes to make this work, to survive. Strangely, my life is literally the least of my concerns. It’s the people Im leaving behind.  Overall feelings: Excitement, Anticipation, Appreciation, w/undertones of worry about my friends, family.” —Cory Jay Powell, the day before he left on a 6 week bicycle ride across country from Monroe, Ohio to Phoenix, Arizona.

cory scenic route

He captioned this photo with “I thought this was the scenic route…” How true.

The parallels are uncanny.

I think I’ll leave this post at that.

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.

Chemo (detour:California)

March,2013…So the plan was in place. We would fly out to California, where Cory had begun his new life in his dream state 6 months before. We would pack up his things to come home to begin 2 consecutive month-long rounds of chemo to bring his cancer into remission.
Why not just do chemo and skip the transplant then, if it would bring it into remission? I’m glad you asked, because I did ,too…..
The reason is that someone has to be relatively healthy to recieve a transplant. And Leukemia, at the advanced stage Cory was in, is an aggressive beast, so remission is usually a short-term affair. So, he would be very temporarily healthy. Just long enough to receive  his transplant.
Point being, the timing of the Plan was essential.

We hop on a plane and proceed to have a beautiful, beautiful time. He had to wear a mask in the airport so he wouldn’t catch anything that could be life threatening or postpone the timing of the Plan….so other than some people taking the long-way-around us when they saw the mask, it was a “normal” trip. Changing planes, standing in mile-long lines waiting to be patted down, standing in the Body XRay machine, dozing in vinyl covered chairs, playing cards on the floor, yawning a lot, people watching, enjoying each other’s company, or comfortable in one another’s silence….
You see, Normal IS Beautiful, but no one ever really gets that until things aren’t normal. Then you Know.
Anyway, we sat at a too-pricey wine bar and shared a flight of wine and ate cheese, crackers, and grapes. And left hungry. We were on our way to California, though, so when in Rome (or on your way to Rome)…

We never spoke of The Cancer on this trip.
We had spoken of it before we left…Alot…in the Shock and Grief and What-Now and I Cant Believe It and You Can Beat This talks…
He cried once in my kitchen. I use that term loosely. It was a shuffle with a look at the ceiling, then a longer look at the floor, a couple short catching breaths, then eye contact. His eyes were welled up and a tear was creeping down the sharpish edge of his cheekbone. I wiped it away. My eyes immediately filled as well and we shared a couple This Sucks quietish tears.
I decided upon Diagnosis, though, that I would never be more upset than he was at any given moment. If he could handle this, then I sure as hell could and would. I did scream and sob, mostly for him, but I saved it for my pillow.
My self assigned jobs would be pray-er, encourager, positivity speaker, and love, love, love & affection-giver, and advocate for whateverheneeded. (Mom Jobs for sure, but what is the point of anything else?) …Oh! and laugher! Most important job of all.

I like that our family eventually resorts to humor in tough times….it’s nice to laugh sometimes when nothing is funny.
Like a little light in a dungeon.
We laughed a lot on this trip.

After landing in San Fransisco and renting a car, we drove in crazy bumper to bumper highway traffic to the San Fransisco bridge. We parked illegally (Cory brought out the edgy side of me), and asked a stranger to take a quick touristy picture. I wished we were tourists.

We got to the funky, eclectic place Cory lived and worked. A goddess-loving, large-wildcat and bird sanctuary. There were 101 really interesting stories about the people who lived, worked, and passed thru there…Cory was lovingly amused by them all. It was a property wrought with contradiction, like life usually is. Gorgeous courtyards and gardens and beautiful animals to the front. Beatup trailers, RVs, and unfinished or abandoned ideas to the back.

Cory was a Cat-Caretaker/Web Designer. That wasn’t on the list of childhood “What do you want to be when you grow up?” choices, but it encompassed his gifts and talents to a tee.
He was the family “fix my computer” Guy, he scored a 4/4 on his AP Computer test, went to college for Computer Science…computers and code were one of his things. And “their website is stuck in the 80’s, Mom”….

He was also an Animal Whisperer. Vanessa (Cory’s bestbest friend from college who lived and worked there with him) and he relayed a story from the winter before of him spending days with a wildcat to remove a string from a surgery it had had to drain an absess. In her words, “Cory spent a week gaining her trust; slowly approaching her in her cage every day saying, “Hey baby girl, I’m here to help you. Will you let me help you? Shhh, it’s okay,” or some variants thereof every single day. Until he could approach her. Until he was able to pet her her. Then he was able to sit next to her and scratch the top of her head with the scissors in his hand so that she’d get used to the scissors near her face. Finally, he was able to try to cut the piece of string. The scissors were too dull- it wouldn’t cut. The wild cat got angry, growled, and ran into her den to hide. It was another four days before she let him that close to her face again. Cory remained calm and patient, stopping by before getting on the bus to college, and also when he got home. He finally got the string out of her face, no problem. From then on, she often let him pet her and play with him.”  He succeeded. The makings of a legacy…

At the farewell dinner the next night I heard that story a few times over from the staff there, coupled with words of love and admiration for him. I sat by a lovely woman (seemingly my age, seemingly unassuming with mousey brown hair and grocery store-shopping attire) who after talking about how wonderful Cory was, and what utter fascination she had for my being a mother(“How did you become a mother?!” Ummmm….), she then proceeded to make a strong case for the reality of Teleportation. For real. I tried to look matter-of-fact while I listened. If only….
When I shared this with Cory and Vanessa, they were not surprised. Cory affectionately laughed and Vanessa only said, “Ive got to get out of this place…” They were observers, employees, and loved the people, animals, and the land— but carried their Midwest sensibilities in their back pockets.
 I enjoyed them together so much.

Vanessa had prepared a room in the resort for me. I was so,so touched by her hospitality, she was taking care of me before Id even arrived. She attended to the little things so I would be comfortable. I decided I’d write to her mother…shed be proud of her, I was sure. She’d raised a Beautiful Heart and through her sometimes tough exterior, Vanessa touched me. I never had the chance to spend much time with her previously, but decided she was family the moment I saw she and Cory interact. Their relationship had the markings of dependability, ease, acceptance, understanding, hardship, laughter and mostly, of uncondition. I could see in her eyes she was scared and vulnerable and worried with the news of the new developments. I wanted to scoop her up and bring her home with us.

In the 36 or so hours I was there, I had the Napa Valley Cliffnotes Experience. We walked the Meditation Labyrinth and the Fresh-Vegetable Gardens on the property, walked to the local coffee shop (a moment I am forever indebted to Vanessa for snapping this picture), visited the local self-employed grocer, made rounds to 4 of the vineyards, ate greasy Mexican food, also ate a Vegan fresh and filling meal, drove with the windows down and the music loud, and took in the breathtaking sight of the landscape. I know why he loved it here.

The Reality of the situation was always floating around us, but for now, we consciously and collectively treated it like an afterthought.
“So, did you call the Mini-Storage place?…oh, good, should we put my name on the contract too?…..the grape vines are shaped so funny, they look like little trees, don’t they?”-Me
“The vineyard is down the road to the right….hang on, first I have to stop at the doctor I’ve been seeing here.”-Cory
“All packed? (why is he coughing?) ….So, are these birds trained, too?”-Me
“The tow place is on its way….Have you met my friend Dragonfly? He’s from Ohio, too!”-Cory
The tow guy had been called out of dinner with his family to come too many miles to tow Corys motorcycle to the storage unit. He showed us pictures of his kids. Cory pushed the buttons to do the lift….I had flashbacks to when he was a little boy.
Cory thanked him repeatedly. He was So appreciative of every human being. All the time.

We had the privilege of raising a Beautiful Heart too.

So-long, California. See you all too soon….

104 days since LifeRedefined

FEBRUARY  3, 2014

My son died 104 days ago. Yeah, that pretty much sums up the chaos and confusion that prevails on a daily basis in my head.

Im trying to push, fakeittillimakeit, fraudulate behavior, put up a front, smile anyway, socialize, stay out of bed and smile. Every day. And its alot of work.

And its flimsy.

But I’m still here…and trying to figure out why. WHY am I am here and he’s not? Why is life so hard? Why does it hurt so much?

Today struggling with the sad conclusion that I can’t Save any of my kids. I couldn’t physically save my son, and I can’t fix the pain that my other three children are experiencing and I can’t make their good choices for them or fix their bad ones for them or fill their emptiness. I can’t repair their hearts anymore than I could cure my son’s cancer….and it tears me up, like, rips my insides out that I. Cant. Fix. It. For. Them.

For the first time in 25 years, I had the thought and said it Out Loud to my husband, “I don’t think I can do this” referring to the parenting thing (I didn’t sign up for the death-of-a-child part) which is a little late seeing that my youngest child is 17.

So I’m supposed to be strong FOR them.

And I can’t even be strong for me…and bless my husband’s heart…there is nothing left for him. No-thing.

And God? I am straight-up, seen an angel, commited 100% follower/believer, confident to my core Christian. Nothing could shake me. No-thing.

Until Losing my Child. It shook me and my faith. For just  a minute…just long enough to give me an understanding of  my younger child’s intense anger towards God.

I read something about leaving God’s sanctification of others up to Him, so I’m holding onto that (basically because it takes something else off my to-do list). They are ultimately His. That’s hard to swallow sometimes, but also what I’m most grateful for.

Good night. Been a very long day full of Teenage. Lots and Lots of Teenage.