Thursday, December 29, 2011

Imperfectly perfect.

This is dedicated to my friend Tanya Luz, who way back encouraged me to let it be what it was, to embrace what it is and hold my head high--or shake it when necessary.


We wheeled into the parking lot, crunching on the ice underneath, a little giddy at the thought of a few hours away for a little rest and relaxation.

"Oooh, let's start in the hot pools and then go on to our appointments," Lisa noted as she started out of the car.

I froze. "I didn't bring a swimsuit," I said.

"Oh, I didn't either, not a big deal," she replied, and then stopped. "Oh."

We both looked at each other for a minute. "Lis, I don't think I can hack sitting with a bunch of people I don't know with these scars. It wouldn't be anything if I had boobs, but I just don't think I can do it."

"That's ok, let's just go in and see what the situation is inside," she offered.

[I need to pause here and say that from time to time I realize that I am waaaay TMI in what I write here. When I think about my male friends reading this stuff, I cringe. I wonder sometimes if it's crazy that I write about these things and then I realize that people can decide to read if they want to. And, for those of you who are here because you are googling "schlongs"---yes, I can see you--sorry to disappoint.]

So we cruised inside to this beautiful spa teeming with people, grabbed our robes and headed into change. The women's locker room was packed and suddenly I felt like the early-developing 5th grade girl trying to hide the embarrassment of her breasts while clumsily changing clothes. Take off the shirt, hold the robe with chin, try to get into robe without flashing everyone, {shit!} drop robe. All the while uncomfortable and slightly panicked that I am going to make someone else uncomfortable. Yes, uncomfortable. Because it's not really about me feeling like a freak so much as shielding others from the discomfort of the experience of seeing someone with a double mastectomy.

But on the way into the showers I noticed something. Women line the dressing room in various stages of disrobing and, as I cast my eyes around the place, it hit me how imperfectly perfect the female form is. There are women of all shapes and sizes. Lumpy, bumpy, big, small. Even the ones in the best shape had boobs that were disproportionate or hips that were too wide or, gasp, cellulite.

Imperfectly perfect.

In a flash, I thought of my friend Tanya who used to do burlesque and her stories of women with all sorts of crazy, mixed up bodies who would get up and shake it, just because they could. And in that moment I realized that I am just another of these imperfect bodies lined up. My lack of boobs makes me a little bit more of a sideshow, but I may as well own it. In all likelihood, one of these 16 women in the room will have breast cancer too. In all likelihood, they will all have mothers or sisters or friends who will find themselves in the same situation I am in. In all reality, my hiding doesn't help anyone.

Out in the pool, the water was so hot and the air was so cold. We women alternately crouched under the water and rested alongside the pool. Sitting with my head back, talking to my sister, relaxing into the feeling of purification, of lifting, of being just present with where I am. Delicious.

Wednesday, December 21, 2011

Begin the Begin

Today was an end and a beginning.

It was my final appointment as a cancer patient. It is the beginning of my life as a person who is, in some ways, managing having a chronic disease.

We sat with my doctor as he spoke about the rules of the game going forward, about the inevitable worries that crop up, about when to call and what not to worry about. And then it was over.

Over. And so very strange.

Nick and I both walked out almost feeling like "what happened to us these past 10 months?" When you aren't in the middle of it anymore, it feels a little blank.

I had cancer, now I don't.

Or do I? Or will I? Life is back to normal, stuffed too full of things to do from family to projects to dust bunnies. In many ways, it was like it was all a dream.

This ending is almost more strange and sad and bizarre than the day they unplugged me from chemo. The finality of it is confusing.

I was not sick, then I was, now I am not.

I didn't know I was sick before and I don't know if I will be in the future. Part of me still doesn't grasp the fact that I had cancer. Isn't that strange?


Part of me does not grasp the fact that I had cancer.

I keep repeating that in my head, trying to get it to sink in.

How do you survive something you've never really accepted?

This is all part of the restarting. I can floss my teeth again. I can exercise in real ways. I don't have to use so much hand sanitizer. My hair is growing back in.

In 6 months, will I remember any of this?

Let's begin again, begin the begin...

Sunday, November 27, 2011

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.

Friday, November 25, 2011

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.

Friday, November 18, 2011

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?


Saturday, November 12, 2011

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...

Sunday, October 30, 2011

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

Sunday, October 23, 2011

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?

Friday, October 14, 2011

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.



Saturday, October 1, 2011

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/

Friday, September 9, 2011

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...

Monday, August 29, 2011

Jim Croce Would Have Written This Better In a Song

I looked at him quizzically as he dashed in, grabbed his jacket and bounded back outside. "Where are you going?" I called after him. "I'm going to go take a walk with your Mom!" he shouted back. Fear and delight mixed in my stomach, I watched as he jogged down the beach with a huge smile on his face and caught up with my mother who was walking in the other direction.

I'd only met him a few months before, a blind date set up by a mutual friend that neither of us thought would go anywhere. The night we met, it took about 3 minutes for me to be completely enchanted by him. He had a wonderful, open smile, an infectious laugh and an incredibly curious mind. We leaned our heads together in conversation, drank bourbons and scotches, talked until late in the night. As he opened the car door for me, I remember thinking "hmmm, this guy may be a keeper."

Ten years later, and many miles between, I look back on that girl and think "oh sister, you had no idea...no idea what an amazing gift you were getting."

When I play back those ten years, there are many points that stand out in my mind. I remember taking him to visit Dad and Hunter's grave and the gentle way he pulled aside the chairs from the marble floor slab bearing their names.  I remember listening to him give the Father's Day talk at our Unitarian church about what fatherhood meant to him, so articulately and with such depth that he brought tears to the eyes of the minister herself. I remember, so clearly, the strong hug and calm reassurances that came when my sisters called to say Mom had lost movement in half of her body, that they didn't know what was wrong but that something, most definitely, was awry. "We'll get through this, honey, go be with your mom and the girls. Everything will be ok. We'll make it work." as he sent me off for weeks at a time to be with my family, never complaining about the extra burden of taking on the kids or re-arranging his life to accommodate my absence.

And I remember, most vividly, making that call, crouched in a quiet room at work, to tell him that the test was positive. "What test?" he said for just a second, then hearing my voice crack, realizing what I was talking about. We had both been assured that it was nothing, certainly just a benign mass, leaving neither of us to believe the news when it all came rushing home.

Standing on the other side of the glass watching him run down that beach, I could never have forseen the amount of love, patience and friendship that that man would show me over these ten years. I would never have imagined the hills and valleys we have come through, nor the mountain we are climbing now. The arguments we've had and the difficulties we've faced as a couple seem minor now in contrast to what we've been able to move through together. Truly, times like these give you a great perspective on the measure of a man. 

I'm not foolish enough gamble on predictions of the future, but I know that no matter what happens, I will never be able to repay this good, solid, sweet man for his kindness and love during this time...never in a million years.

Nothing I write here can really do it all justice. So, I will just say I love you, Nick. And thank you.


I Jinxed Myself, You Know...

I wrote that post and, sure enough, got dinged again. Went in last Friday and my white count was lower than the week before. They put me on another round of Neupagin and I am trying not to totally freak out that this is a symptom of something greater. But, on that note, please keep me in your thoughts, prayers, practice, etc tomorrow as I am heading back in for another blood test to see if things are ticking upwards as they need to.

Love to you all.


Friday, August 19, 2011

Little Did They Know...

Years ago, my mother, Nick and I went to go see the film Shackleton's Adventure, the story Sir Ernest Shackleton's now-legendary 1914-1916 British Imperial Trans-Antarctic Expedition. It's an amazing film, narrated by Kevin Spacey who uses a VERY SERIOUS, British-ish voice that just tells you that SHIT IS GOING TO HAPPEN. And it does, brothers and sisters, yes it does. 




A bit of description from the internetz: After five months of journeying, 28 men became stranded as their ship became trapped in pack ice. After eight months of waiting through the Antarctic winter, by October, encroaching pack ice crushed the ship like an eggshell. Needless to say, the story gets worse from there...much worse. Spacey peppers his narration continuously with ominous lines like "little did they know, the worst was yet to come."

We walked out at the end of the film, each of us completely exhausted from watching the relentless hell these 28 men had to endure. Exhausted and amazed at their resilience.

Not to put going through chemo on the same level as enduring the Antartic in the dead of winter, but sitting in the dr.'s office on Tuesday, I felt Kevin Spacey's voice in my head, And little did they know, the worst  WAS  YET  TO COME.  (duh! duh! DUH!).


So this week, we celebrated the halfway done mark and were supposed to launch into treatment #5 and a switch to Taxol.  The last two treatments on AC have been pretty sucky from a feeling-the-effects perspective and so I am simultaneously happy to move on to a new drug and completely petrified of the side effects. Eyebrows and eyelashes? Gone.  Feeling in fingers and toes?...hmmm, well lots of folks get neuropathy and about 5% never regain sensation again. Fingernails? Probably going to get really ugly and maybe fall off. And how about the delivery of the drug? Well, about 10% have a pretty serious allergic reaction sitting in the chair.

I sat there thinking about the risks and the gambles. I sat there thinking "I only have four more of these left and then I am done". I sat there and thought that my vanity and love of the use of my hands means something to me. I sat there and thought about the worst being yet to come. And then I realized that the worst part is not having a choice. You are in it. It's done. You move forward. The other options (a 30% chance of getting breast cancer somewhere else in  your body = metastasized cancer) are not simply not palatable. 

So instead you go out for dinner and drinks with wonderful friends to celebrate the midpoint. You laugh and cry a little bit with these friends, you tell stories about what life was like before and after this happened and you realize that it's worth every single bit to get to stay around to be with such wonderful people.

Friends and loved ones lift you through these times. I have felt angry, I have felt sad and depressed and more than a little lost, but never once, not once, have I felt alone. And that is pure gold.


Today I went in for the infusion only to be told that my counts are too low and that I am going to need to delay for some yet-to-be-determined period of time (likely a week). The thought of delaying puts me in a really bad place (more time? I want to get this DONE) but the idea of having a somewhat-ok-feeling week with my husband (and no kids!) might be something that I really need.


Yes, the worst, in some ways, may be yet to come. I hope not, but I won't know until I get there. And, Shackleton's crew of 28 men? They all made it home, every one. Working together, they pulled each other through.  If they could manage, with your help, somehow I think I can too.








Saturday, August 6, 2011

Fermata

A fermata (also known as a hold, pause, colloquially a birdseye, or as a grand pause when placed on a note or a rest) is an element of musical notation indicating that the note should be sustained for longer than its note value would indicate. Exactly how much longer it is held is up to the discretion of the performer or conductor, but twice as long is not unusual.

In essence, the fermata steals time.

*************

I was really embarrassed when the tears sprang to my eyes. Everyone got quiet as I stared at the floor and tried to collect myself. I glanced up and looked over at Nick with pleading eyes and face mirrored a my sadness and concern, but wasn't budging either. Then heard my oncologist say "Don't blame him, blame me, I'm the one that's telling you that you can't go."

I was supposed to be heading to Chicago in a week for an overnight trip with my team from work. A wonderful two-day design brainstorm with a fantastic design firm. It was a crushing thought. This is why I do the work I do, these are the experiences that feed me and propel me forward in my learning. It was not only something that I was looking forward to, but also something that made me feel normal during this time of non-normal living.

My doctor had made a good point. I would be staying by myself...what if I spiked a fever in the middle of the night? What if I couldn't get in touch with my team mates or him? I wouldn't have any data to share as I showed up at a Chicagoland emergency room. And me, with a problem after every chemo to date was someone he didn't want far away. We were switching things up again, better to play it safe and stay put.

He was right, but it was maddening. I started this process hearing from friends whose relatives had gone through chemo unscathed, one of two weathering it so well that they didn't even tell people at work that they were undergoing treatment. My expectation was that I would just live my life the way it was with this little inconvenience happening on the side. I know it sounds ridiculous, but for those of you who know me well, you aren't surprised. I power through, damn it. And when I can't, it's a shock.

Letting go of that trip really cause me to think about what breast cancer has brought to my life. It's like someone has punched a huge pause button. On the rough side, it's the hold on the phone to an important conversation you want to get back to. On the good side, it's the fermata, holding of note for a time that you see fit, knowing you can move on to the next beautiful combination of notes when the time is ready.

It's taken me over five months to get to this place. Five months to finally realize that I need to let go of what I thought was going to happen and just be. To feel like a bug trapped in the amber sometimes. To end that last note (the days before I got my diagnosis) and just hold it until I can resume. It's stolen time,  yes, but stolen time that will give me time in the future.

The reality is I never believed I would have cancer at such a young age and I don't think I have ever come to terms with what it and it's treatment has and will mean in my life.

I think I am still in denial, to some degree, of how big this is and what it means.

Allowing that in would have made/may still make me insane. But, I am coming into an understanding of what I am in, right now.

But time is tricky. If you are like me (or the old me), you count the minutes, you look at the long haul, you make plans, you wait. In the fermata, you try to sit with the pause, you begin to realize that you can't fight what comes, you pay attention to what is around you. You are a hybrid being with one foot in the future (4 more to go! 5...6...7...8!) and you mind and body in the very real and addled present, forcing you to sit, very firmly, where you are.

It's been years since I have considered getting a tattoo, but I may have found the right one to remind me of this time. Just a small one, inside my wrist, to remind me of what I have learned here, how important it is to be, to rest, to hold that note for as long as I need to before moving on composing the music of my life. The gift of memory and mindfulness, movement and pause.

Friday, August 5, 2011

There are these days that are the days.

First the health update:  Chemo #3 went rather well for the most part. We switched up the Neulasta situation and moved to the 10-day shot sequence of Neupagin, which lessened the horrible heaviness in my chest. I had a couple of rough days in there, but deal-able. Shooting up Neupagin the parking lot of David's baseball game is something I won't forget too soon. That and the insert says "do not shoot into scar tissue or stretch marks." Um, on this belly? That gives us a lot less real estate, people. I'm just sayin'.

Today is the last AC and then on to the extremity-numbing Taxol (which scares the bejeezus out of me) for four more and then I am DONE. Want to know what I am going to do after? I am going to have a big, fabulous glass of good wine. I am going to eat an amazing meal. I am going to work out. I am going to go somewhere wonderful with my husband. I know I am only half way there, but I can see the light. I can. I just need to remember that it's there.

Now a story:

"No, No, I can do it myself" she says as she pushes off with one foot, wobbles a bit and then clicks into the rhythm of movement. I stand back and watch my sturdy, spirited 5 year old girl grasp and master the balance and physics of the bike. At my elbow, David says "Just one more run, Mom, how about it?" and we move his bike onto the grass and I run beside him, lightly grasping onto his shirt, as he slowly and methodically pedals in a wide circle. Ava likes the flatness of the pavement and working without a net between she and the skin-skinning bitumen. David's skill improved 1,000 fold when we moved onto the field. "It would be like falling during soccer", he says, "or not even that bad." No sooner he says that and he's sailing along, free of the fear that had brought tears to his eyes just an hour before.

I woke up yesterday morning with a head full of steam about teaching the kids to ride their bikes. Tomorrow was a chemo day, I was going to feel crappy next week, time was running out on our second goal (first goal = learning to swim, second goal = learning to ride a bike), SuperNanny Steph was there to help, it was only going to be 80 degrees... so I closed my computer at 5, rounded up the kidlins and Stephanie and off we went.

It must have been a pretty funny sight, me in my baldiness/do-rag, skirt and mary jane shoes running up and down the parking lot grasping onto the bike and shouting instructions. Sweating buckets and realizing about 30 minutes in that I hadn't taken off the horrible, weighty foobs which were adding to the slog. In fact, one guy stopped for quite a bit to watch. He had a huge smile on his face so I suspect he was going to offer a compliment, but who had the time to chat when there were kids to push.

Our dear friends, the Leos came over to find us too. Miriam and Andrew riding circles around David and Ava, luring them into their mini biker gang and shouting words of encouragement: "Think of something yummy like chocolate cake! Think of your friends! Think of good things! You can DO it!"  We ran and rode, sweated, screamed our excitement, gave big hugs, did happy dances, encouraged each other. If it weren't such a trip and hysterical to hear and see, I would have been a pool of tears for the gentle sweetness of it all. Delicious.

video



video

Standing there with my friend Anne and our kids, I realized it was the first day in so long that I just felt like a regular mom to my kids. Not a sick mom, not a mom who is too tired or busy or down to do something, not a mom with cancer. Just a mom, and a mom who loves being there for these milestones in life, who loves hugging her sweaty, wonderful chickens after they accomplish something they are so proud of.

And then it hit me that by the grace of the universe, an early diagnosis and mostly just plain luck,  I will be standing there for many more.

What luck, and luck it was that I caught this disease when I did.

And that nearly blew my mind.

You never know what will be handed to you. You never, never know.

So today, I am thankful for that little bit of time. The old normal in this temporary "new" normal. And I hope they will remember it too.

Saturday, July 16, 2011

Vignettes

The Meaning of Cake:

The new nanny candidate Stephanie was due any minute. Between the day's bustle of karate, swimming, shopping and running around, Ava and I stood in the kitchen catching our breath and talking about chocolate cake.

DING DONG!

All crazy curls and 5 year old drama, Ava yelled "I'll get it!", rushed to the door and flung it open to reveal not Stephanie, but a well-dressed man of Indian heritage whose puzzled look equaled that of Ava.

"Um, Mom?"

I walked to the door and the man looked at me, dashing in my neon-orange do-rag and obviously bald head, and asked "Are you Fran Loosen?"

"Well, yes I am."

"Then this is for you," he said as he handed me a brown craft paper cake box. "Best wishes and ENJOY!" His smile lit up and he turned and walked away.

I looked down to this:

I walked in the house carrying my box, a little dumbstruck. Ally sent me cake. Ally lives in Seattle. I was wanting cake right at that moment and Ally sent me cake and it came like magic in the middle of a day when I really needed a it. And then I started to cry.

Ava looked at me like I was insane, not so much because I was crying but because

"HOW DID SHE KNOW YOU WANTED CAKE RIGHT NOW, MAMA? HOW DID THAT HAPPEN?!"

And I laughed and looked at her through my tears and just said "Sometimes your friends know what you need, babygirl. And sometimes, like magic, things just happen."

*******
Detailing of Stuff:

Sometimes the things I write here I write because I hope if there is ever anyone out on the web trawling around looking at blogs related to the experience of breast cancer, they will pick up something about my medical treatment and experience that will help them on their journey. The problem with any illness is that information is weird, unpredictable, oftentimes not accurate or difficult to decode. It's really unclear how it's going to map to your life and your own experience, which makes you crazy as you work your way through symptoms and situations.

Starting on Sunday, I once again had difficulty with heaviness in my chest, the same as the last round of chemo. Combined with the freaky feeling of the new port (yes, you can feel the port in the neck...gross) and a dull ache re-occurring in my blood-clot arm, by Wednesday I was pretty freaked out. What if this was something bigger that we didn't catch last time? I had read a little bit about shortness of breath on the cancer boards, but nothing substantial so on Thursday morning I called the oncology office. The nurse sent me to triage who then sent me...yep, to the ER. The ER? Really? So we trundle in, me in my depressed white count state, to sit for 8 hours and go through countless tests to find out that I don't have a pulmonary embolism, no new blood clots (old have not totally resolved), no heart attack, no this, no that... which was all great. But the damn thing was at the end (very nice experience at the UM emergency room), the doc says "Yes, I talked to your oncologist and he said that in fact the Neulasta that you took on Saturday often causes feelings of heaviness in the chest."

Um, WHAT?

I just spent 8 hours and thousands of dollars in the ER for you to tell me that it's likely from my Neulasta shot?

Sure enough, I google "Neulasta chest tightness" sitting right there in the ER and it pops up on multiple sites. Ok, so why isn't this something that you could have told me last time? Or, maybe before I came in today? Because if you'd said "Hey, Neulasta causes these same sensations for folks" I would have saved the trip and felt a lot better about everything. Sigh.

That and it seems that I had a really tremendous bout of reflux that I didn't handle properly ('cause, um, I didn't know I had it), so my low white count self is trying to heal the etched away bit of my esophagus at the base of my neck. It's felt like someone has had their pointy finger drilling into the hollow of my neck for the past 5 days. For those of you that suffer from acid reflux or who have kids with GERD, I don't know how you do it. I feel like someone is trying to choke me every minute of the day. It's horrible.

Not sure where I am going with this other than to basically report out that things are fine, I am hanging in there adjusting meds, figuring out how it's working, trying to make sense of it all. Another chemo next Friday so keep me in your thoughts.

********
The Freaks in the Hood:

Finally, a bit of humor. I have taken to startling the neighborhood with my bald head. It's just too damn hot to sit with a scarf on all of the time, so often I just go without. And I am BALD these days. Which the regulars handle just fine, actually, and the kids in the neighborhood have gotten used to it and it's no big deal. Nick shaved his head last week, which was great and now we look like a pair of total freaks. The good news is that I suspect it would be very hard for us to have a real argument looking like this because it would just be too damn comical.

The best part was that on the day that he shaved his head we were standing outside with our friend Dave (who also shaves his head) just having a chat. Three totally bald people hanging out in the front yard shooting the breeze as a group of people (not from our neighborhood) came by walking their dogs. And, man, did we get the looks! Not until later did I realize that we must have looked like some sort of new Burns Park version of the Heaven's Gate cult.  Two people is a coincidence, three...that's a group!


Unfortunately, Nick's head has had more practice being bald than mine has, so he doesn't have the same tan lines that I am sporting, which gives me a particularly bizarre look. Welcome to the neighborhood! We haven't gotten Ava and David to follow suit on the head shaving bit, but I may buy them the little fake bald head coverings just to get a picture. Ava's slightly horrified, but we all think it's pretty much in good fun.

Nothing much more to share from here. Thank you all for your continued love, thoughts, energy, prayers and support. Two down, six (seriously? shit!) to go. I am learning more and more each time. I feel enveloped in love even though the going is rough and there are many days I cannot believe that I am going to work through all of this. What will come, will come. I am just happy to have you with me on this journey.


*******

Tuesday, July 12, 2011

Facing what comes

Health update: Round two chemo is done, port installed and we're checking how that's working. The hair is *gone*...beyond the buzz you saw earlier. Things are ok here health wise. Chemo sucks, but you knew that already. More to come on that front, just had a story in my head I wanted to tell today :)



Saturday afternoon I sat in my bathroom and looked at Nick and said "Well, let's do it." It was the first blood-thinner shot I was going to need to take at home and the assumption on both of our parts that my needle-phobic tendencies would keep me from being the administrator of the shot. I'd been really working myself up to this moment and decided "what the hell, I am going to try to do it myself"...and did. It actually didn't hurt at all and I am really just a big baby, but it was a leap for me to just own the thing that needed to be done, even though as I poised that needle above my belly I was scared as hell to do it.

It reminded me of an experience that I had with David a couple of years ago in Tang Soo Do class, one that I have seen a number of times since. The back story has grown a little foggy, but we were at a belt demo at our dojang and the various belts were going up to perform. David was the only student in his particular color class at that point and the instructor had overlooked putting him in the show, completely by accident.

He sat there, huge tears in his eyes, looking at me like "what do I do?" So I kept giving him the signal to hang out, be calm, not worry. The demo segment event ended, he got up and came over and asked me to take him outside where he proceeded to freak out. Master Fancher came out to see what was up and said "well, David, you'll just do a demo now" which for some reason took him into the atmosphere of "NOOOOOO!" sobbing, crying, freaking out. I left him with Master Fancher leaning over him giving him a really solid pep talk and telling him he needed to go do it, even if he was scared. So David came into the room, still sobbing, people were wondering what in the hell was going on and Master Fancher proceeded to tell the group what a great student David is, how he's really a Jedi in disguise and David heard none of it because he was still crying. Master Fancher looked over at him like "ok, dude, let's go" and David refused.

It was horrible.

Then, in a moment of total clarity, Master Fancher walked over, picked David up under his arms like a little kitten, and took him to the center of the floor.

He barked the command of "attention!" and David snapped to into ready stance.

And as Master Fancher called each of the moves, David executed like a total champion with precision, skill and technique unlike anything he'd ever done before. He came into himself in that moment in a way I had never seen...confident, driven, focused and brave. The crowd was on its feet cheering, moms in the crowd were tearing up.  I was completely blown away.

Driving to work today I replayed that scenario in my brain a hundred times, gathering strength from what that experience taught me about facing what comes, about pulling it together, about overcoming fear, about working through something that scares you and not only survive, but to thrive and excel. We are not our fears. We are not our insecurities. We have inner strength beyond our wildest dreams if we give ourselves to test it in the ring.


Just last night, that same special little boy and I wrapped up Harry Potter The Goblet of Fire which left us with a good final thought:  “As Hagrid had said, what would come, would come … and he would have to meet it when it did."

P.S. I wrote a little piece on my experience of taking Tang Soo Do with David for his school's parent blog: http://s-kparentblog.blogspot.com/2010/03/walking-step-behind.html

Monday, July 4, 2011

Se fue

Shortly after I posted the last post this morning I nearly went postal. My hair covered the keyboards, was all over my shirt, in my mouth...gross. I called Nick saying "Do you think the kids will freak if they come home to me bald?" His response was that it was going to happen sooner or later, so it might as well be today.

So I called my girlfriend Lisa who is good with these things and asked her to come over and shave my head. I think she needed a shot of tequila but she got through it fine. Actually, I showed her how it was falling out and she immediately was all "Um, we're so getting rid of that" type of business and started buzzing away. The only thing I had to worry about was her gathering up the hair and crafting some sort of hat for me.

It was short and painless and so for the rest of the day I've been getting used to it.  Here is the result...

I knew that had to get out of the house and into the public immediately or I would totally lose my nerve. What should I wear out? I grabbed my favorite scarf, one that my best girl Sharleen gave me on my wedding day and wrapped it around my head. It feels strange wearing a scarf, I mean, WHY? But I figured that 1) it's something I should try and 2) my newly shorn head would surely burn if I didn't. Then I set off to the one safe place I could go, Morgan & York (my favorite coffee shop) to test out the new look. It was fine. Friends were lovely. Nobody freaked out. Then, emboldened by the move, I drove to Whole Foods to really test the stare factor. A few glances, nothing too bad. Added some 50 protection spray sunscreen to my repertoire and decided to move on to the final test.

I met my friend Joanna downtown for a celebratory glass of champagne. A few hours outdoors in downtown Ann Arbor (under the shade and protected by the sunscreen) with nothing on. No hat, no scarf, just me and some red lipstick and my crazy big glasses. I am sure people thought "WTF?" but it was totally liberating. Not even little kids stared to much. Huzzah!

I'm not sure this is the look I am going to rock all the time, but it is nice to feel like I have options. And, my mother who was so neurotic about keeping our heads nice and round did me so right.

So, I stepped across the crevasse and onto solid ground. It's not necessarily the look I'd choose, but it's the look I have for now and I am going to do the best with it I can.

The Buzz

I am shedding like a Golden Retriever. The floor of our bathroom is a mess of grey and brown hair. It's on my clothes, it's in my eyes and on my face. When I shower I lose so much hair the water can't get it off my skin. The 14th day after chemo hit and, man!, they weren't kidding about the hair taking a hike! I am dying to shave it off but I am worried about trying to do it myself (god, can you imagine?). Besides that, Nick and the kids are in Oklahoma for the weekend and I think it would slightly freak David and Ava out if they came home to me with no hair.

I've been sitting a lot with this today and realizing that there is a rhythm to the readiness of getting things over when you are standing on the edge of a big change. Part of me is really ready to get the port put in and get on with the treatment, although I'm glad we are waiting and testing and trying to figure out why I got this blood clot. It's the same part of me that wants to shave the damn hair already. For as unprepared as I feel to face some of these things, the anticipation is worse. This applies to the reality that in a week I will be shooting myself in the belly every day with heparin, which for a needle-phobic person like myself is akin to, I don't know, putting one's hand in a rattle snake bag. So I sit between the anxiety that comes with anticipation and my mother's no-nonsense "get it over with" attitude, not knowing which way to swing sometimes.

This weekend I elected to stay in Ann Arbor by myself rather than get a last minute ticket back to Oklahoma for our annual 4th of July celebration with my family. I needed a little head space, needed to buy some new clothes, drop off my wig to get cut (still on the to-do list), find some hats and cotton scarves (half-way done, need help on that one!), and send things back to people (dishes, gifts, etc).

I also really needed to be able to sit and think for a bit, re-arrange my brain and heart and mindset around this chemo phase. Chemo is so less tangible than surgery or reconstruction. At my stage of cancer, it's not as obvious why you are doing it as you are treating something that *might* be there instead of something you can touch, feel and see. Watching friends and loved ones go through chemo (and, frankly, still die), I have only seen chemo as a barbaric thing that lays waste people's physical and mental being. I have to keep reminding myself that breast cancer is not lung cancer, that this step helps me be here longer, that my disease is not my mother's disease or Bruce's or Julie's or... This is a different treatment and I know that, but I can't seem to shake the sinister feeling that chemo gives me.

My friend Kim gave me some really good insight the other day that has really helped to shape my thinking today. She told me that I had to stop thinking of the chemo as a caustic, poisonous invasion of my body and instead think of it as healing nectar. Yes, nectar that makes you feel like shit, but a nectar to welcome in to do its work so that I can live a long and healthy life. That is a major adjustment in my thinking, honestly, but one that I know deep in my heart is important. I know in order to make this work I have to ask my body to welcome this substance, to take advantage of what is can eradicate, to allow its presence to do its job. While I think my body doesn't love the chemo, it hasn't reacted to it in all the worst ways (yet? please no.). So I am going to spend today getting in touch with that idea and visualizing how that matter of acceptance could work for me next Friday.

So the next post will be a picture of the shaved head. I've been reminiscing on my fascination with Sinead O'Connor and Grace Jones as a teen. Who knew I'd be mimicking them at 40? Forty and sporting a buzz cut. Call me GI Jane.

Wednesday, June 29, 2011

Reprieve

Just a little update. I got a call from my onc nurse today to say that my oncologist wanted to cancel chemo for Friday and has been consulting with an allergy specialist to see if there might be some immune/allergy complication to all of this. I see him tomorrow morning at 9:15a to get the ball rolling.

I can't express the feeling of relief that flooded over me when I got off of the phone. I do like my oncologist and it felt great to have him be so proactive on next steps. We may not find anything, but at least we will take the time to check out what might be happening if there is something there. In the meantime, I am going to focus on accepting these medicines into my body as a gift instead of the caustic poison I keep hating.

So, reprieve for a week while we work this out.Thank you for all of the support and awesome well-wishes.

Tuesday, June 28, 2011

Update

"The Buddha taught that flexibility and openness bring strength and that running from groundlessness weakens us and brings pain. But do we understand that becoming familiar with the running away is the key? Openness doesn't come from resisting our fears but from getting to know them well.
Rather than going after those walls and barriers with a sledgehammer, we pay attention to them. With gentleness and honesty, we move closer to those walls. We touch them and smell them and get to know them well. We begin a process of acknowledging our aversions and our cravings. We become familiar with the strategies and beliefs we use to build the walls: What are the stories I tell myself? What repels me and what attracts me? We start to get curious about what's going on. Without calling what we see right or wrong, we simply look as objectively as we can. We can observe ourselves with humor, not getting overly serious, moralistic or uptight about this investigation. Year after year, we train in remaining open and receptive to whatever arises. Slowly, very slowly, the cracks in the wall seem to widen and, as if by magic, bodhichitta is able to flow freely." (From the book "The Places That Scare You: A Guide to Fearlessness in Difficult Times" by Pema Chödrön

I am sitting with a pit in my stomach tonight, not really sure what to do next. Not knowing, of course, if the feelings I have are rational and *real* and need to be observed/listened to or if I am letting my anxiety get the best of me. Do I trust myself or am I being hysterical?

A little back story...

I woke up on Sunday after chemo on Friday with an ache in my arm which I quickly decided was just something that happens as a result of chemo. I mean, the stuff is hard on the veins even though my infusion went off without a hitch. No worries, it will pass. But Sunday turned into a grumpy Monday and finally Tuesday I emailed my oncology nurse to say that maybe we should think about getting a port for the next infusion if my veins were going to hurt like this going forward.

She called me immediately asking "What vein pain? What are you talking about?"

So, I drove home from work and met her at the clinic in order to have tests run and to find that I have a superficial blood clot in my arm. Not a lot of drama, on motrin for a week, allowed to fly, etc. We talked about placing a port near my collarbone that will send the chemo right into the superior vena cava, allowing the chemo to disperse quickly into my system.

For some reason that idea has made my gut roil every time I've thought about it. Something about the idea of the chemo going right into the core of my body, something about that just doesn't sit well with me.

Today we met with my oncologist who looked at me honestly and said that he didn't know why the clot happened, that it's not something he's seen before and given what happened with the mammogeddon, it's unusual. He looked worried when he said this (which totally freaked me out although I appreciate his honesty) and went on to say that he felt like it could be one of three things: 1) a problem with the iv (not likely) 2) a clotting disorder of some sort (I have had a superficial clot before--but have had 3 surgeries in 3 months) or 3) an immune or allergic response. We can control for #1 and #2 through the port placement and blood thinners, but #3 is a wild card.

His thought is to keep moving on with the chemo. My sisters want me to go get a second opinion. Nick's not feeling totally confident. I think my gut is telling me that something is up and that I need to get that figured out before we go another round. But there is this timing and effectiveness of treatment thing which means I can't just stop and take stock so easily. And you can't snap your fingers and get a consult at the mecca of cancer care (MDA) overnight (although I am trying). What if this is all nothing but worry? Why am I worried about that?

So, I think I am going to trust my gut on this and go south for a second opinion if I can. I worry that I am going to offend these folks who have been so nice to me, who have given me good care. But I feel like things aren't very coordinated here, and that freaks me out.

I am being pulled off to bed by my husband now that we both realize it's 11:15p. Not that sleep's going to be very easy tonight. Keep me in your thoughts, prayers, meditations and the like this week. Love you all.

Tuesday, June 21, 2011

Ashen from the Inside

I wake up in the morning with a face that resembles the Laughing Buddha, except that I'm not laughing, just swollen and red from the steroids that have wrecked my sleep and made me edgy. I remember Mom looking like this too so I welcome the day with the sarcastic smile she used to give to say "this shit sucks" when we'd comment on the chemo.

Chemo fucking sucks.

Four days in and I can tell the difference already. The skin on my face has grown rough, I can feel the little hairs on my head starting to revolt. My breathing feels off and my scars hurt. I feel burnt from the inside out. I am in no way myself.

It's really hard not to despair right now, so newly on the edge of this phase, looking out 16 weeks and wondering how I am going to make it through this time. Maybe it will get easier (ha), maybe I am just going deep in this feeling right now, exploring it and making it my own before I put it aside and live through it. But I will say that I have never felt anything like this before in my life. And it's frightening.

But, as my friend Liz said tonight when I noted "chemo sucks ass" on my Facebook page: "Yes, it does. But then you are here. Healthy."

That's what I am trying to grasp on to tonight, the reality that I will come out of this healthy or somewhat like I was before this began. I hate my vanity, but I hate looking the way I look, feeling the changes in my body, feeling so hollow, ashen and carved out on the inside. I can't quite figure out how to pass the time, to mark the passage of this time, to check off the days and weeks coming up so that I can cling to it being over. I need something to physically manifest this experience to let me know where I am in the process. It just seems so long.

I guess there are things to look forward to...a wonderful sister in law getting married, a conference in San Francisco in October...little things that will mark the end time after this has come and gone. I need to set these markers up. I need to find the rock cairns along the way from women who have already traversed this path and can help me see the other side. I need to find the reason for the movement forward, every day.

Right now, I just feel like curling up and escaping for a few months.

Tonight I am off of the steroids for the first night, so here is to better sleep, a less puffy face in the morning, maybe a real Laughing Buddha to greet me as I walk out tomorrow. Here's to making it through. Here's to moving it forward.

Thursday, June 16, 2011

Floating

I hold in font of my eyes an image of a leaf on the water. The clear water simultaneously reads brown from the silt below and blue from the skies above. The leaf floats gently, swirls a bit, catches the slow current and moves lazily by. It is sunny and warm in the shade covering the stream. It reminds me of camp summers riding in Colorado, our horses bending their heads for a cool drink while we sip from our canteens. Peaceful, beautiful, calm, centered.

My friend Joanna gave me the image of a leaf on the water when I was telling her of my anxiety about starting chemo tomorrow. "Be a leaf on a stream", she said, and that image came to my mind.

I started out this week in a panic, feeling as though I had put off studying for very important test. Three weeks became two weeks became WHAM! one week with no time to get my life organized before this phase came in. I was supposed to be set up for acupuncture and reiki and have my house cleaned and be meditating and sure as hell be feeling more comfortable and confident that I was at that particular moment. I was supposed to be ready, damn it. I was arrested with dread and fear and disappointment in myself for not preparing to face the chemo better.

But this week the kids went to see their Oklahoma aunties and uncles who welcomed them with open arms and lots of love and gave Nick and me the breathing room we really needed. Days of flexible time and no guilt around being home late from work and relaxed dinners with a man I really love took the anxiety and gave it a coconut butter rub down so that it couldn't stick its sticky claws in quite so deep. I feel somewhat relaxed, that leaf on the stream, just letting myself be.

The past two weeks have been full of interesting observations about my life, too. Things I have always known about myself, but things I think I am coming to understand. This experience has made me more authentic, I think, more willing to stick to things that I believe even though they may not be popular. It's made me more willing to risk at work and in my community life. It's made me realize that this is the shot I get and I need to do according to my true self. There aren't a lot of second chances to do this all over again.

It has also given me insight about something peculiar and telling about my personality that I only just realized yesterday in the car. I had my ipod on shuffle and was listening to a really wonderful mix of music. As the program would dip into the 2,150 songs available, I would find myself intrigued by a song, instantly nostalgic for the memory it evoked or simply enjoying what it had to offer. But shortly into it, my mind would wonder what song was next, effectively ruining the experience of the current song in anticipation of what was to come.

I am hard, hard, hard wired this way. It's not only the way my mind creates and visions new work and ideas, but also makes sense of the world. Anticipating the next song, much like anticipating the next phase, the next treatment, the next reality can be exhausting and allows the monkey mind to run rampant with the endless permutations and combinations that the world of medicine holds.

So tomorrow as they plug me into the machine and we begin the 16 week trip down this potholed path, I am going to keep with that image of the leaf in the stream, of the cool mountain air, the smell of horses and leather bridles, the feel of boots on my feet and nothing to consider but what lies just shortly ahead.

Wish me luck.

Wednesday, June 8, 2011

To Foob or Not to Foob? Not a Simple Question

We have a lot of discussion about "foobs" around here lately. Foobs are our family name for "fake boobs" or the glorified rolled up socks that have passed as interim prostheses that I wore until I got my new (and, frankly, not improved) "falsies" (falsies is a term I remember my mom using for fake boobs...falsies, foobs...).

Ava is most concerned about the foobs and their application. I am usually without them in the house and outside in the neighborhood because they frankly aren't that comfortable. Before we leave to go anywhere, she whispers in a conspiratorial voice "Mom, are you going to put the foobs in?" It's worrying to her when I don't wear them. I suspect it's her trying to normalize what is going on. I don't blame her. Moms are supposed to look a certain way and boobs are normally a part of that package. And then there are the other kids...not that anyone has asked about why I don't have boobs anymore, but I think it's just a matter of time. My kids know, but what do I say to other people's children? "I just don't have them anymore?" WTH?

But it brings up a lot of stuff for me. Wearing the foobs feels like a lie. They are so not me, especially these foobs that are big puff ball socky things that move around in my tank top or the silicone masses that feel like the joke sumo wrestler fat suits that people don to wrestle. Seriously, people. One in 8 women gets breast cancer and these plasticy, mounded things that don't look like real boobs (think 50's style bra ads, bullet boobs) nor feel anything remotely like real boobs are what we get? We have robots to do hysterectomies but can't make a good looking fake breast? Gah.

But not wearing them leaves me feeling like an embarrassed cat that has had her hair shaved off. Women tend to say "oh, nobody notices! They look at your face, Fran, not at your chest." But that is totally not true. People notice, especially men, and it's awkward. I don't know if men knowing you have fake boobs is any more awkward or not. For some reason I think it's not (or that's what men have told me about implants, at least). But the absence of boobs is awkward for people. So we are back in that thing again where you feel like you are embarrassed and they are embarrassed that they notice so you wear the foobs and feel a little bit like a fraud and get irritable about the weight and discomfort and, shit, you are back at another damned-if-you-do scenario that seems to pervade the cancer journey.

It also brings up the subject of le wig. It's summer and I am so not looking forward to the idea of wearing a cap of hair on my head. I know that around the neighborhood and even around town a scarf will be fine. But what about the workplace? Not wearing a wig at work seems kind of like going out without the foobs. Could I go without the foobs and wig at work? No foobs and a crazy Hermes scarf on my head. Oh lordy.

I know a lot of people will say "Just do whatever feels right!" but it just not that simple, it's not that black and white. There are levels of complexity to this whole ordeal that make it worse than just having cancer. It's one thing to have cancer and have people know and be freaked out and feel sorry for you or worried about you. It's another to add insult to injury with the disfigurement and neon sign baldness that it brings. Things you can hide, things you can't. Things that are a huge drag. Things that draw attention that a person like me and my mother before me hate most.

So I am not sure where I sit on all of this. I'm going to poke around on the web a little bit to see where I want to be in this interim space of booblessness. Speaking of, we are getting some really rad button ideas! Maybe on the next post we will have a sample to consider...I think we may have to vote.

Friday, May 27, 2011

Into the Void

The past two days have been rough, really rough. In them I have learned a couple of things, the most important being that perspective is everything. I'd guess that people talk the biggest game about the upcoming bungie jump until they peer over the platform and nearly lose their load. I am here to tell you that a mastectomy covered in bandages is the equivalent of the bravado that happens on the ground. The bandages come off and your guts are in your throat. Facing things head on in this space rocks your world.

So all of these silly things have been floating through my mind for the past couple of days. I know it sounds really bizarre, but I feel like I am saying goodbye to a part of myself that has been incredibly important to me. "What?" people say, "they are only breasts! Who cares as long as your are healthy!" *

I care. Let me make it clear.

I do care. I care that I am healthy, but I also care that I have lost a part of my body that meant a lot to me. At the risk of sounding completely vain, before having children this was one of my, ahem, better attributes. I was known in college as the girl who had the Vogue model breasts. So, pardon me if I seem shallow, but I am bummed that they are gone. I am a woman through and through and I loved that aspect of my femininity. (side note: we all know that this was like 20 years and 100,000 miles ago...yes, the warranty had expired and they needed retreads...but let's not mar the story with the addition of unnecessary facts).

And I am really bummed that I had to explain to my kids that I don't have breasts anymore. That is a fucking hard thing to explain to child. How does a child work that around in his/her brain? And when I give my kids hugs now, their little heads strike hard muscle instead of the softness that they have known since the moment they were brought into this world. I remember snuggling up to my mom as a child, the softness, warmth and her smell enveloping me. I know this is important to my kids too. And I know they will deal, but it sucks for them too. So much suckitude.

And there are countless other things to be mad at. Things I can't begin to consider and things that I hope will normalize. I am trying not to hunch over. I am trying to look at myself in the mirror. I am trying not to feel like a freak. I have met a handful of women who have gone this route and have done it with incredible grace. They have found that middle ground and I am reaching out to them and learning from them. As I sit here one month out from the first surgery, it's like starting all over again but not feeling prepared. I had written off this branch of the decision tree, remember? It's not forever, but it's for 6 months which is a really. long. time.

I'm trying to find the humor. I'm trying to find the thing that sticks for me about this experience and is the gem I take from it. A friend told me that maybe it's my Amazon heritage come to fruition. I kind of like that idea. Or, this is the prism through which to see life for while (I could totally pass as a man...hmmm). Or I just play it off as well as I can with Aunt Pat's advice about always looking fabulous as long as you have red lipstick and a Hermes scarf. If you can't fix it, feature it, as Joanna always says. But push it away with humor or bring it in with anger, it's wounding in a way that I know I will survive, but that I need to honor.

*I also want to say that in the not-so-distant past I was very cavalier with a friend about this very subject. I have a couple of friends who are BRCA positive and have been grappling with whether or not to do elective bilateral mastectomy. In talking to them (before my own BC diagnosis), I think I was really preachy about preserving health, yada yada and all with the "they're just breasts" kind of talk that makes me cringe now. It's a BIG decision. One that I would make again, absolutely, but I wish I had been more sensitive then given what I know now.