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...

4, 3, 2, 1...

Four, three, two, one
Earth below us drifting, falling
Floating weightless, calling, calling home...

I'm trying not to jinx myself. Trying to stay healthy. Trying to stay focused because as of Friday, I have only four more treatments left.

This is huge. Huge. HUGE.

So, I'm not writing any more about it here, but this song has been zipping through my brain on a daily basis.

Love to you all.

Major Tom

What Comes Next

I have been thinking a lot about what comes next. Obsessing, a little. Five weeks left of treatment.

Five more times in the chair.

I keep envisioning that last day. What will it be like? Will I cry when it's over? Will I laugh or clap my hands or do a little dance? I don't think I can do any of those things as there are people far sicker than I sharing that space, sitting in their own chairs, clinging to hope and working through whatever musters them to be there. That would be rude, wouldn't it, to celebrate end of this leg of the journey when others have so much more to face? But I can't imagine how I will feel at the end of this very long run. When I think of it, tears spring to my eyes.

It will have been twenty four weeks that I will have been in chemotherapy treatment. Nearly six months of my life. Nearly a marathon. In some ways I feel like I am going to be the guy whose body shuts down on the last leg, cratering under the exhaustion and stress from the experience. In others, I feel like I will finish at the end with my chest out, arms held high. Who is to know until I get there. I'm not tempting the Fates again with too much advanced thinking.

But this leads me to the next thing (ah HA FATES). What comes next? How will I know if I have cancer again? I asked my nurse practitioner the other day and she said "well, we look for signs and symptoms." Signs and symptoms? That's all? We get to wait until things are far enough along that I really start to notice that something is up? What about tests? What about some sort of imaging? Wait and see? What the hell?

A few weeks ago, Ava and I were standing in a local bagel shop behind another woman and her daughter. This gal had the telltale bald head so I looked over at Ava and said "See, this lady has no hair just like mom!" The woman and I struck up a conversation and she asked "Is this your first time with breast cancer?" I must have looked a little shocked as I said "uh, my first" because she said, kind of softly, "oh, it's my second. I mean, I had a good ten years in between..." and her voice kind of trailed off. I looked from her beautiful daughter who must have been only 18 to my beautiful daughter who would only be 15 if I had ten years and my blood ran cold.

Ten years.

Being this close to the end also makes me realize that I don't know if I can go through this again. I know I will if I have to because I love my children and my husband and my people and don't want to leave them, but the thought of going through this again just is kind of beyond me.

I know it's hard for my friends who are surviving breast cancer to read this blog because it brings back too much stuff. I have an acquaintance on FB who is struggling through recurrence now. This is the part that I didn't want to think about. This is the part, near enough but far enough away, that scares me.

Ten years.

If I could be so lucky? Is that the way to be thinking about this?

Maybe it will mean I will live my life better, differently. Maybe I will make better choices with my time, think about the future in shorter chunks, not waste energy on situations and irritants that do nothing to fill my bucket. Maybe thinking in terms of ten years would be a blessing.

But ten years is not enough time to do the things I want to do with my life. I have plans, people. I have things to see, I have trips to take, I have communities to build, I have people to love, I have kids to marry off, I have grand babies to hold, I have a retirement home in Seattle to buy...I have plans.

So what comes next? What do you see for me?

Solidarity

My bonus mother-in-law Ginny had that Ginny look on her face...the one she gets when she's got something to tell you or share with you. "I have something for you," she said as she slid a black bag across the table. We were sitting in the sunshine, drinking wine and enjoying the afternoon on Federal Hill. "Open it and tell me what you think."


I opened the bag and the box inside to reveal a thin wire bracelet bearing a medallion with a breast cancer ribbon etched on to it. When I looked up, she held up her wrist which bore the same bracelet. "I bought them for us all," she said. "Pat, me, Maryann and Lynne, Katie, Alyssa, Jenn...we all have them. We all just feel really helpless because we aren't there with you during all of this. This way we are connected to you every day and you know that we are with you too." Katie held her's up, as did Jenn and something passed between all of us that remains deep in my heart.


So today, hundreds of miles away, I'm thinking of those special women and how incredibly lucky I am to have them in my life. I'm thinking of how my life is enriched by the time I spend with this family who I was so lucky to gain as part of the excellent husband deal I got. Today I am feeling really lucky.

Navigating Who I Am (in this space)

Little hands crept around the door frame. "Mama?" her voice called tentatively. "Can I ask you something?" I was in the shower and panicked for a moment. Ever since my first surgery, we'd made an agreement with the kids that time in the shower and getting dressed time were "personal time". "Dad doesn't watch Grandma Pat get dressed. There is a time when you get old enough that privacy becomes important," was my reasoning to them, but it was 100% that I didn't want the children to see what had become of my scarred and destroyed body. I thought it would scare them. Because, in all honesty, it still scares me.

But here she was, my little girl, needing something.  "Come in, sweet girl," I called. She came in, fully in the middle of her thoughts, and stopped. She looked. She looked puzzled. Then, taking in what she saw in this new landscape of her mother's body, she started in with her question. I smiled, she smiled. It was ok.

Dealing with the reality of what happens to your body during breast cancer treatment is one of the most difficult aspects of living through this journey. You feel sick from the treatments, you fear death, you fear the unknown, you have to work through all sort of emotional issues with friends and loved ones about your illness but one of the hardest things, every day, is to deal with the body that you inhabit. For me, that is feeling stripped down, genderless, alien myself. I remember seeing a picture of Ralph Fiennes as Voldemort in the last few Harry Potter movies and being horrified because I identified so strongly with his bald, pale, almost genderless presence. That's the shit side of what body image in this space does to you. I've mourned that in previous posts, but it's something that is always with me.

Yesterday, a friend sent me an article that spoke so clearly about what its like to feel the tug and pull of these body changes. Even if you are right with it (which, obviously, I am SO not), there are others whose opinion, feelings and thoughts you have to navigate. Children, partners, friends...it's overwhelming. My means of dealing with it have been to turn inward and just try to put my head down and get through it, figuring that at some point the new normal will kick in (post-chemo, new surgeries, weight loss) and I will be able to deal, or at least deal with what is permanent. But its hard and lonely working that way, even though daily I hear from friends that I look beautiful. It's a mind mess I that I am still working to resolve.

So this article and the Scar Project in general has done a lot for me. These are *beautiful* women, lovingly photographed by a fashion photographer. Some look amazingly beautiful, some are just who they are. I remember seeing the photo of the pregnant woman on a poster in Cincinnati and being shocked and horrified before I myself was a double mastectomy survivor.

Now, I want others to see so that we can make this all more normal. It's there and it's the truth. And there is no shame. And there can be beauty. But shit, it's hard.

Article here:  http://www.brainchildmag.com/essays/fall2011_lynch.asp

The Scar Project website here: http://www.thescarproject.org/

It's the not knowing

It was deja vue all over again. My oncologist sitting in front of me with a really perplexed look on his face. "Your counts were low two weeks ago and so we didn't do chemo, figuring they'd rebound but they haven't. In fact, they are lower than last week, down to .5. Your liver enzymes are also elevated again, which is unusual. Honestly, I really don't know why this is happening."

Bwwwwwwwwwwwwwwwwww. I blew out a deep, long breath and waited for him to continue, not loving that this was the second time my too-honest-for-his-own-good oncologist had told me that my situation was "unique" and "unusual" for his 30+ years on the job. They'd been huddling outside the office for a good 20 minutes, waiting for the input from my hematologist, and I was nervous about where this was going. [Little did she know, the worst was yet to come...]

"So, we are going to need to do a bone marrow biopsy to see what is going on. We'll schedule that for tomorrow and get this all figured out."

A BONE MARROW BIOPSY? Are you fucking kidding me?

I got teary, again, and sat there for a minute trying to collect myself and not go into full panic mode.

[Bone marrow biopsy means they are looking for something like leukemia, which can occur as a result of chemo. Shit, shit, shit! What if I have leukemia? What the hell am I going to do? There is NO WAY I can handle anything else, especially not leukemia. I am done. Forget it, I am quitting chemo. What does the taxol get me? Probably nothing. Shit, what if I have LEUKEMIA? Shit, shit, shit!]

And then got up and left, feeling incredibly numb.

Nick had gone up north with the kids for a week, my sister wasn't coming in until evening the next day and that put her in Ann Arbor after the biopsy. I had to face the procedure without Nick, and ask my dear friend Jenn to put off her family vacation to take me. And what if something was really wrong? What then?

So much of what wears you down in being ill, dealing with doctors, dealing with health issues is the not knowing. Not knowing how things will turn out, not knowing what the treatment will be like or how your body will handle it, not knowing what is happening when things go very, very wrong. The dreaded words are "X is happening and we don't know why." I think of my friend Ashley's stroke and my friend of a friend Maria's TBI that is causing new problems. I think of my friend Beth who deserves to get her zing back and my dear friend Anne in London who has just started on the path I began back in March. So fragile are these experiences where so much hangs on so many factors. It's easy to get frustrated at the doctor's not knowing or be angry with your body, but it's really just the reality of not knowing that leaves you paralyzed.

My sister and I also ventured into the conversation about what my longer term stats look like. I've never gone there, too scared to start googling about and the medical community is reluctant to raise those issues with patients (thank goodness) unless prompted by the patient's need to know. But Lisa had done her homework and so we started talking about what this means going forward. Basically, if I make it 5 years without a new cancer, I am in great shape. If not, not so much. Triple negative cancer has a higher recurrence spike, but if you can get through those five years, your future looks bright. It's a more aggressive cancer but responds really well to chemo. Five years out and you may live to be a hundred. It's the not knowing that eats you up.

Nick and the kids came back from camp on Friday night while I was still waiting for my tests to return and, in some ways, thinking about the five year frame gave me a new lens on things. We'd be talking about college and it would hit me that maybe I won't be here to see David go to college or Ava graduate from highschool and I would be awash in tears. I have never allowed myself to go there because I am convinced that everything is going to be fine. It is. But it makes me think a lot about what the next five years looks like for me, the way I want to live my life, the choices I make about work, where I live, who I am friends with, how I treat my body. Sometimes it's the not knowing that spurs you forward.

After a weekend of held breath, my bone marrow tests showed no signs of leukemia (which my oncologist said would have been really unusual (that word again!) at this stage of the game). My Absolute Neutraphil Count went through the roof thanks to the neupagin and my liver enzymes are going down. I have a meeting with my Infectious Disease doc next week to talk about the possibility of a virus and to see what can be done if it happens again. My oncology doc switched me from 4 sessions of big Taxol to 12 weekly sessions of smaller Taxol so it's easier on my bod and means I get to go to Providence for my sweet sister-in-law's wedding and I am hoping a conference in San Fran. I am negotiating now, damn it. Small wins while you can get them while living in the land of not knowing make a difference.

And, am watching my own personal shot clock get reset and run down, reset and run down.

12, 11, 10, 9, 8, 7, 6, 5, 4, 3, 2...1.

It's the not knowing that...