Restarting

"Did it feel short, Mama, or did it feel long?" David looked up at me with his big brown eyes and I had to think for a minute about what he was asking.

"This chemo, D, or just in chemo in general?"

"The whole thing, Mama. Did it feel like it went on for a long time, or did it feel short?"

I had to think about it for a minute, because at that exact moment one of the longest, most grueling experiences of my lifetime actually felt short. I was over the line. It was over. I was done. What was there left of that experience but to leave it behind?

Even though I am only two days out from the last session, I'm already dealing with a myriad of complex thoughts about what it means to be out of treatment. I feel like I am seeing glimmers of my old self coming around, touching into the old me and seeing the possibilities of a life restored. Last night I stood washing dishes and listening to Nick play various tracks from Jimi Hendrix on the stereo while he and the kids discussed Hendrix's style. We had just spoken of going to Seattle to celebrate our 10th wedding anniversary in August and to show the kids the town. Suddenly I was awash in tears, feeling in my body the real me coming back to take that journey with my family and all the wonderful things it will entail.

I can feel what it will be like to be normal again and it's just so completely overwhelming.

But on the other side, I don't want to lose the significance of what I have been through, what people have helped me through, what women and men go through every day who live with cancer. Part of me wants to hold on, to remember how shitty it felt, to remind myself of what it took from me so that I make good choices about the way to live going forward. I don't think I can shut the door on this, nor do I want to, but I'm not sure what kind of space to give it in my life.

I wrote a post awhile back about this year being a pause in my life, the fermata, the time that the music stops for as long as needed. My wonderful friend Deb, herself a musician, shared this thought with me:

I like the idea of a fermata. There's a real beauty in that time when the note is held, or even better, when the rest is held. Everything is suspended, time stretches, you stop looking back at the last note, and start looking forward. You know that the tricky part about a fermata - at least in ensemble playing - is starting up again, since the group has temporarily abandoned meter. That is why first violinists get so good at the quick rhythmic inhalation that warns "we're going to start now!"

How do you start up again after something like chemo? I've been sitting with this idea for weeks now. I'm feeling around in it now. I'm letting myself build into it, tears and all. As they unplugged me from the chemo line for the last time, I wept. Not so much for joy, but just for the end of it all. My tears freaked the nurse out, but my friend Jenn was there crying along with me. I passed over the finish line neither on my knees, nor with arms raised in bold triumph, but rather with an appreciation that was humbling to the greatest degree.

Maybe you start with humility. Maybe you let yourself reflect. Maybe you don't push yourself back into the busy-ness of what life is about too quickly. Maybe you take time to heal and appreciate and rest. Maybe the starting back in comes slow, the rhythm restoring as if feels right, first violin be damned.

The long tail

The dragon tail is back.

It's as though the Taxol knows that today is my final chemo treatment. This week brought swollen hands and feet and a feeling that my fingernails and toenails are going to rip off. It's as though I have slayed the dragon only to have the tail come around and spike through my armor with the animal's last breath. That's what I feel like today.

But screw the dragon tail, as long as I'm still standing.

Today's the day I've been looking forward to ever since that first treatment six months ago. Today David gave me an enormous hug and said "Last chemo day, Mama, last chemo day." So many miles under our feet for this phase. So many miles that these little people to have gone, too.

But today, I'm not counting my chickens before they're hatched. I'm going to wait until I get there, wait until I get in the chair, wait until the bag of taxol comes, wait until they unplug me the one last time, wait until I actually leave that building before I believe it's done. Because something could happen. Anything could happen.

*****************************
It starts with the gal at the parking lot booth. "Do you have--oh HI! How are you today?" she breaks off as she sees me in the passenger seat. We are old friends by now, the regularity of my Friday 1pm visits makes me a familiar face in a sea of patients coming in for care.

Familiarity is what gets you through the process of chemo. Familiarity and ritual. Walk in, check in for labs and pray that the lidocaine cream you forgot to put on has had enough time to numb your port before they need to stick an absurdly long needle through your skin. The guy in the labs that I always seem to get is sweet and knows my name. We have a running conversation on sports (not my strong suit) and weather to distract from the gagging smell of saline and heparin that gets the port ready. Then upstairs for a coffee and a look at the beautiful jewelry that has been on display for the past few months. The woman at the coffee shop smiles and says "Medium skim latte?" and I want to hug her because she remembers me out of the hundreds of orders every day.

From latte, it's back to wait. Check in with Darrin, the guy who sings like Luther Vandross under his breath and who is two-man comedy act with his co-worker. I love Darrin.  When I imagine what Darrin looks out at every day as he checks people in to infusion...incredibly sick people come in with the hope of being healed...and I am incredibly thankful for his laughter and levity.

This is not small shit we are talking about. This is a cancer center where people hold out hope like the shrine at Fatima that they will make it. There are children and elders, there are mothers and daughters, there are people crammed into this waiting room who have the anxious eyes of the newly diagnosed or the dull countenances of those who are going through the motions. I can't imagine what it is like to sit in Darrin's seat, to deal with the spector of death every day with patients you have grown to know. To try to keep your mind focused on the healing. To know that every interaction, every check-in, every "how are you today?", every bit of a smooth sailing visit means something to a person who is trying to do what they can to stay alive.

When I say to Darrin "You know, you aren't going to be seeing me anymore, Darrin." he says "I know, and I am so, so thankful, Fran." And he means it, because for the here and now that means I have survived.

Having it all

"C'mon, Mama!" he yells, "our song is on!" Sure enough, the thump-thump-thump beat meets me as I head up the stairs. I find him in his bedroom, his sweet dark eyes shining as he pauses to belt out the lyrics

I throw my hands up in the air sometimes
Saying AYO!
Gotta let go!
I wanna celebrate and live my life
Saying AYO!
Baby, let's go!

with such earnestness that I want to grab him and smother him in a huge hug. He works his wiry, muscly frame around nearly (but not exactly) to the beat of the music. He's learned a few new moves from his friends, I suspect, which include a bit of a football player's blocking jam and a frat boy fist pumping "rock on" kind of expression. It's adorable.

God, I love this kid.

We shout the lyrics to each other, smiling that this is our favorite song together (of the moment), the enjoyment of serious, hard dancing taking us both out of whatever else exists for the moment.

The first time I heard him sing these lyrics I thought "You're 8. What in the world do you have to throw your hands up in the air about? And what is this about celebrating and living your life? You are 8. What's that about?" It was in the space the before my diagnosis, before the reality of having a parent in cancer treatment would invade our family, before his daily "how was your day, Mama?" became code for "did you feel ok today?" or "how did the chemo go?"

This cancer experience sits deep with this little guy. Patient through my bad moods, thoughtful and helpful when I haven't felt well, David is 100% a trooper. He's a kid that keeps things inside, handles things at his own pace, asks questions after you create the space for more questions. It takes some prompting.

I will never forget the day that we told the kids that I had breast cancer. We were heading back to Rhode Island to see family and knew that we needed to tell the kids for fear that they might overhear something and be confused. Driving that 45 minute stretch to the airport seemed like the best option. We turned onto the highway, I turned to Nick and said "let's go" and he began.

He said "Guys, we need to talk about something. Mom got some news about her health that we need to talk about. She just found out that she's sick. It's nothing that you can catch and she's going to be ok, she's going to have to take some medicine and have some surgery."

I had been scared to bring this up, so incredibly close after my mother's own death from lung cancer. David and Ava had seen my mom just days before she died, when she was in no way herself, thin and incoherent so close to death.

Standing at my mother's bedside, they clung to us; David's face buried in my belly, Ava crying into Nick's shoulder saying "That's not my grandma". They knew too well how cancer could ravage a person. I knew that the connection was just too close.

"What kind of sickness does she have, Dada?" David said.

"She's got cancer, David," Nick said.

You could have heard a pin drop. I turned around to look at them both and said "It's not like Grandma Suz's cancer, David. I am going to be fine, it's not the same thing. Don't worry."

And then my sweet, sweet boy let out a long, slow and soft whistle of relief and my heart broke completely open. No child should have to hear this, I thought. No child should have to hear that his mom has cancer. His momentary fear and subsequent feeling of relief was palpable. 

I tried to get him to talk over the weekend, to ask some questions and let some things out. He refused. He really didn't want to talk about it. You could see in his eyes that he was really scared and playing off that he wasn't. Ava, on the other hand, was a non-stop question machine. "What happens with cancer? What will happen to you? Will it hurt? What do they do? How will you feel?..." Endless questions.

On the flight home, I used his little sister's inquisitive and fearless orientation as bait. As we sat on the plane together, I said "You know, D, Ava's had some great questions about my being sick." "She has?" he responded, "what kind of questions did she ask?" So we went through Ava's list of questions and what I told her. We talked for the full hour and a half about what was going to happen, what he was worried about, what I was worried about, how treatment worked. He finally said "Well, at least you won't lose your hair." That part, and the reality of it, I think made him saddest of all.

The guy sitting behind us had a bird's eye view of our conversation and as we all stood up at the end, he said "I don't think I've ever heard a better conversation between a mother and son about such a difficult subject. You have an amazing kid on your hands there." Damn straight.



Ava runs into the group to catch the last few verses of the song and we all three sing the lines of the song that mean the most to me:

I'm gonna take it all like
I'm gonna be the last one standing
...
Cause I, I, Believe it
And I, I, I
I just want it all, I just want it all

And it really strikes me. I do want it all.

"All" now has come down to a pretty narrow set of things.

I want to be here for these children for as long as I can, to get to know them deeply as people and be amazed at how they grow. I want to be healthy and happy and curious about life.

I want time. That is all.

I want to believe that I can be the last one standing, against the odds, dancing with my children years from now at their weddings. It's not so much to ask, and it's not so much to expect when you look into the eyes of these little people who need a mom.

So the next leg of this journey is fulfilling that promise, that expectation. The next leg is setting myself up to have it all--even in this modified space of what all might mean.

Check this kid out. Wouldn't you?

Holding On

"You know, I really like this song," Dad said as he reached over to turn up the volume. It was Blondie's The Tide is High, a groovy beat with instrumentation that would have totally appealed to my dad's love of big band music. And, Blondie was one of my favorite bands so the thought that Dad and I had a connection through this song was a bit of a trip. We sat there for a minute just really enjoying the song, driving together as we had for so many years, sometimes talking, sometimes just staring out the window.

Moments like these were big for me as a young person. My dad was a very complicated man and for as big of a personality as he had, he was actually a pretty internal person. He was a guy that went to church every Sunday but sat in the back, often not with us and I never knew why. He loved his kids like crazy, but sometimes had a hard time building a bridge between the way he was raised and the way things had become...and when I say that, meaning that kids could be seen and heard. Reflecting on him now, I see how many conflicts he had and how he handled them. As an adult and a parent myself, I feel compassion and a sense of loss more now than I ever did as a child.

Looking back, I realize that my dad was really the adult in my life that "got" me most. He's the first person I called, crying hysterically, when I found out that I had failed freshman algebra. Crammed into the little payphone booth in the boarding department, I sobbed for a good 15 minutes while he sat and waited for me to calm down so that he could tell me that he himself hadn't done well in school, that he expected me to raise my grades and get some help working through the process, but that he loved me and was proud of me. He was empathetic and kind, which I wasn't expecting but really needed. Later he confided that in those minutes he could hardly breathe, fearing that I had been raped or something worse, willing himself to just wait and let the news come.

Dad was the one that would palm me money under the dining room table before I went back to boarding school, or would come to the Father's Dinner celebrations at school and take me out on the town with my best friend Sharleen and her own crazy, complex Papa who was a kindred soul to my dad in so many ways. We had such a great time together in those moments. He was always my father, but was an ally, someone who understood me even if he wasn't a fan of what I was doing (insert vision of multi-colored hair, etc., etc.).  Mom always said that we were too much alike and that's why we fought when we did. I agreed with her and still do. But I think that is what drew us together, what gave my dad the ability to listen and be a safe place for me to turn. He knew what it was like to grow up where we did, to have to live life in a very small community with a heavy family name and all of the baggage that went with it. We were both dreamers, Dad and I. We liked thinking big and letting someone else figure out the details. He taught me a lot about possibility, belief in yourself, not letting people get you down. They were all things he struggled with himself. I'd love to talk to him about it now.

Like it was yesterday, I remember my 16 year old self walking down the hall of the dorm when one of my friends told me that the hall mother, Millie, needed to see me. Millie was as eccentric as they come, but she *loved* her girls and we had a special bond (because I was a trouble maker, truth be told, and she liked to take the feisty ones under her wing). Millie said "Fran, your mama called and needs you to call her back." "Oh, Millie," I said, "Mom's on a trip to Hong Kong. She left yesterday. This is an Oklahoma number. There must be a mistake." And Millie gave me that Millie-don't-fuck-with-me look and said "Go call her, Precious, she needs to talk."

Dad had nearly lapsed into a diabetic coma and was in the hospital. He needed triple bypass surgery and things were touch and go. Mom told me the news pretty matter of factly and said "I'm going to keep you updated, don't go far. I love you, honey."

I couldn't believe it. I was so angry, so hurt and so distressed...but mostly just really damn angry. So angry that I sat down and wrote a 10 page letter basically laying it all out for my dad. I told him everything I felt from the way he took care of himself, to the way I wanted life to be, to how much I loved him and needed him in my life. My mother said he kept that letter next to his bedside the entire time he was in the hospital and read it often. Seeing and being with my sisters and brother, knowing how deeply he loved my mother...all of these things were the propellant he needed to make major changes in his life. His recovery was amazing and the care that he took of himself, after such a close brush with death, was unbelievable.

And the feeling of being completely robbed when he died 8 short months later from appendicitis is something I think I will never be able to overcome.

I have really been unable to pull all of these threads until now. So many memories that are so good, but were so painful. I think it was easier for years just to ignore the fact that he was gone or to dwell on the times that things were not easy between us. Because losing your father at 16 is quite possibly the worst time, as if there is ever a good one. So I'm going to sit with this feeling, write down the things I remember, celebrate and mourn my dad and what he was and what could have been.

Grief is not a straight line, it's a rubber ball let off in a room. And it doesn't rest for a long time. The tide is high/but I'm holding on...