The meaning of life

I look at the last time I have posted here – August 2018. That lines up perfectly with another timeline – Jeni’s cancer battle. I have been quite occupied the past year, with work, life, and yes, watching my friend struggle to live.

It’s the new reality, as of Thursday, May 9, 2019. Jenifer Pettibone is gone, at age 48, from acute myloid leukemia, then the chemo, then the stem cell transplant, then the graft v. host disease, then the infection, then the lymphoma spots in her brain, then the chemo, then the graft v. host disease, then the pneumonia.

So why does any of this matter? Why does one woman’s suffering and death mean anything on a planet of a lot of people going through stuff?

It just matters to me because she was my dear friend. We’ve known each other since first grade, then really reconnected when I moved closer to her for a new job 5 years ago.

The person I want to remember is funny, stubborn as hell, had terrible taste in wine (the sweeter the better – please), loved her three children, loved to rescue doggies and get them to great homes, worked way too hard, and had the best laugh. Her hair was perfectly blond-red, she defined athletisure wear as a way of life before the media did, and helped so many kids find safety as a child welfare attorney.

So I have been gone from posting, spending time with her. I tried to write a 100 times about this, but just couldn’t. Putting it in words would make it even more real. Beyond what I saw.

This unexpected terrible journey will always have a cinematic start for me: I was in bed, in Rome, in my rental apartment for a study abroad trip for students I was leading. My room was lit up by moonlight. I heard crickets chirping. And Jeni called me on Facetime audio.

She was oddly reserved, almost quiet to the point of me not hearing her well. But I heard every one of the words I wanted to go away: They think I have cancer. Leukemia, something called AML.

Shit. I googled it. Shit Shit. AML is not good. We can do a lot with leukemia these days, esp. childhood onset, but AML is still on the naughty list. Low long-term survival rate. Like zero.

Jeni knew I would look everything up and tell her this. That is what she wanted. Her journalist friend, who dabbles in medical and legal things, would research the hell out of the web to figure this out. We would make a plan, and then execute it like cold-blooded lawyers. I would find the loophole and she would drive through it.

After all, we joked that I was her neurologist over the past 4 years, as she went through so many of these almost-paralyzing migraine headaches. I had taken her to the ER more times than I want to remember, as I feared she was actually having a stroke. I was able to diagnose her better than the overworked ER nurses could.

And now here we were, progressing from the damned migraines and straight on to a deadly cancer. Great. Can we save this for when we get old?

I came home from Italy, and she went into the hospital for in-patient chemo. Like carpet-bombing chemo. Napalm. Serin. Assad-worthy-against-the-law chemo. She was so sick, as the poison made her turn from the outside-looking healthy to now her shriveling outside matching her cancer-filled inside.

I went nearly every day to see her. She wanted red pop. She wanted Towne Club pop. She wanted her mail. She needed her kids. She needed somebody to sit with her and tell her silly things, serious things, or just be there to yell for help when nobody came even when we asked 5 times over more than 45 minutes ago.

Oh the kids. The invisible ink cri de coeur, writ big, was the kids – we all lived their suffering spirits every day for the past 11 months. The kids. Those awesome foster kids she adopted and loved to pieces. The kids. The kids. The kids. The kids now living with friends, neighbors, sometimes family while mommy fought to get better.

She had to live. For them. So bring on the poison, the puking, the hell. It was all to live. For them. She was going to beat this because she was needed in this world.

The summer of chemo turned into the fall of waiting. She went home from the hospital for a little bit, then went back in to prep for her stem cell transplant. She had a match, which was amazing. A match from Germany no less!

I joked that her donor was a German woman, which automatically had to be awesome. She then would be totally stubborn for a good reason. She joked she would be more German like me, which may be scary! If she developed a craving for Deutsche Küche stuff from Aldi’s, then we would know the stem cells really kicked in. Ja wohl.

More chemo. More isolation. More total fear of one rogue germ making her sick. Masks and gloves and gowns for all of us to see her. When we were daring, we lowered the mask to kiss or touch her. She had no immune system, no hair, no color in her skin anymore. She was turning into the sick person who lived in the hospital, every day a step away from her vibrant self. But she had hope, because the stem cells were the Obi Wan that would surely slay the evil Sith Lord AML.

Thanksgiving came and we were all thankful for the procedure. It was a success. She should get better now. Slowly.

Except I never really saw her recover at all. She went home for December, so weak. Her bed was her prison and safe space. I would come over, and we would lay in bed to talk. We kept waiting for the day when it would all kick in, turn around as promised. That day was always tomorrow. Hope was always the code word. We had to hope and believe.

New Year’s Eve is my line where the roller coaster started the hard downhill turn. Jeni went back to the hospital, and it never got better. Infections, graft v. host, then the lymphoma diagnosis, and the rest.

Did you know that if you get a transplant of some sort, you are more likely to get lymphoma? That is utterly cruel and insane – we fix one thing (yay) and then it opens the door for you to get something even more incurable.

They never really knew for sure if Jeni had lymphoma, as I put a hard veto vote on the creepy neuro-oncologist who wanted to open her skull and do five biopsies. He was nearly overcome with giddiness at the thought of that. I wanted to slap him. Jeni did too – and just said no thanks. He went away.

We had our brief moments of hope, little shards that would end up cutting all of our hearts as they slipped away too fast. She went to rehab in March, with the goal of building her up to go home and resume life. She was back on chemo, this time for her brain.

But she was determined to get stronger, for the kids, so she amazingly walked like a champ all over the PT center. There were a few times when it was a perfect spring day, and I loaded her up in her wheelchair, threw on her kelly green St. Patrick’s day hat, and we went for a long walk around the building. We loved every minute, because it was normal. She was outside and free.

But then the slide started again, faster and faster, until it was obvious there was no more sliding to do. We were at the bottom.

The last time we talked was April 28. She was in the hospital, and was hoping to start making a plan to go home in like a month. Looking back, that was crazy. She could not even get to the bathroom without help, much less think about going home to be a mom to three active kids so soon. But there we were, making the plans. I wrote down all the things she wanted done to the house to make it more friendly for her. She wanted the kids to have Boy Scout camp, princess parties and summer school. These things were going to happen. Because everything happens in tomorrowland.

We ordered her new glasses, a funky blue pair that she said she never had the courage to try before. We were going to go there. We paid her bills. We even had a surreal discussion about where she wanted to take the kids (with my help per her order) on vacation to Northern Michigan. Mind you, she was not allowed to be in the sun without being covered up. She had to be careful of public places and germs. She had to be close to medical services in case she needed them. She needed someplace that would be disability accessible for her walking scooter.

Maybe camping. Maybe the Sand Dunes. Maybe Traverse City. Maybe Mackinac Island. Maybe a waterpark.

I told her we will see what looks best. She was so happy, there was a plan. Then I kissed her bald head, which had some funky little alien tufts of white and brown hair growing, and said I love you. She said the same. We always did that, as we learned last summer that this all could be over fast. No words left unsaid.

And that would be the last time we talked in person. We shared some texts on April 29, before she had a biopsy. She was put in ICU the next day. I cancelled the online order for her glasses two days later, because I felt she wasn’t going to need them anymore.

She was gone a week later. I saw her one last time in ICU, on that Monday, a visit so nightmarishly terrible that I cannot write about it. I have decided to forget about it and focus on April 26.

I can’t honestly tell you what I have “learned” from this. There is no greater meaning, yet, from watching a strong, vital woman get destroyed piece by piece by medical intervention.

They gave her six weeks to live without treatment. She lived 11 months with treatment.

Jeni wanted to live. And she fought like hell to live. That’s probably all I can say I know for sure right now.

So yeah, I have been away from my blog. But I think you can give me a pass.