Getting Things Off of Chests (figuratively and literally)

First of all, this is Sean, so please don’t expect any clever figures of speech or exceptional writing. Do expect typos.
Diana asked me to write a post giving a quick update. It has been a long day, but I am feeling relief. As I write this post in the spa-spital–where she will spend 3 nights–I can hear Diana breathing deeply, recuperating after a BIG day of surgery. Her snoring has never sounded so good.
Diana underwent two major surgeries simultaneously today: a double mastectomy and breast reconstruction, using her belly tissue. Both surgeons are pleased with how well the procedure went. In preparation for surgery, Diana worked to get her body as strong and healthy as possible. All of her hard work paid off, as both surgeons commented on her health as a major reason why the results are so positive. I’m so inspired by her determination and strength. Nurses are coming in to the room every hour to check on her incisions, take vitals, drain fluids and turn the lights on. The surgery was a doozy, but I take comfort knowing that there is no more cancer in Diana’s body. We’re on the road to recovery.
While I have hijacked Diana’s blog, I want to say some Thank Yous:
– To my wife for being strong when I wasn’t, and for being vulnerable when I was strong.
– To my in-laws for loving me and showing me that family isn’t only about blood.
– To my parents and siblings for being in New Orleans and for supporting me and knowing me intuitively the way that only they could.
– To my friends (near and far) for listening and understanding when things got hard.
– To Diana’s friends (near and far) for surrounding and supporting Diana and our kids.
– To Otis and Luna for giving me hugs, for teaching me that my love can be limitless, and for making me smile every day. See, the thought of them just made me smile.
– To Becca and Allie (our wonderful nannies) for loving our kids and stepping up and being there for our family before we even realized how much we needed them.
I don’t think there is a family going through this kind of experience who feels more loved and supported than we do.
Lastly, this is my wife, and those are my kids. Just to say those words makes my heart swell with love. They are the best of me. IMG_5638.JPG

2017: Out with the old, In with the new (boobs)

My torso is a blue sharpie map of destruction. There are lines around my nipples, across my breasts, a triangle from each hip up to my belly button, and a zig zag line up the center of my tummy. I had radioactive tracking contrast injected into my nipple that will stay in my lymph nodes until they are dissected tomorrow. I have washed with antibacterial soap and sent pictures of my boobs to friends.

I’ve packed my bag with creature comforts for a 3 night stay at the spa-spital: aromatherapy diffuser, a little alter with White Tara, eye mask, speakers, robe, slippers, ginger tea, fake candles, and lots of miralax.

This is the plan. 4am wake up and disinfect body, 5am arrival at surgery center, pre-op, sign lots of consent forms, discuss advance directives, 6:45 begin anesthesia, 7am surgery time. They start by removing 3 lymph nodes and send them down to the lab. Then  Dr. S starts on the DIEP flap on my left side while Dr C removes tumor, nipple, and all breast tissue from right side. The lab will check the margins to make sure there is no remaining cancer. Then they switch sides and Dr S reattached DIEP flap from left side of tummy into right breast. Fingers crossed that they don’t have to take all of the lymph nodes.

The procedure will take anywhere from 6-8 hours. I may need small implants depending on how much fat they can harvest from the tummy. By small I mean the smallest implants they make.

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The first night they will check on me every hour throughout the night to make sure that the tissue is healthy. I will spend three nights at the surgical center and then they send me home with recycled body parts and a few drains hanging out of my body. It’s all so bizarre.

As always, I am humbled by the outpouring of love and support. The prayers have been felt and they are holding me up. I’ve shed a few tears in the last few days, but not nearly as bad as the meltdown my preschooler had because I pealed his banana instead of giving it to him whole. So today I’m doing better emotionally than my 3 year old, but worse physically than my 97 year old grandmother. On a scale from 1 to 100 I’m somewhere between 3 and 97.

I’m sad that for a few weeks I won’t be able to hug and squeeze my kids. For 4 weeks I won’t be able to pick them up or take a bath or sleep on my side or stomach. For the rest of my (hopefully long) life I will have numb, fake boobs. But these boobs tried to kill me so they gotta go.

I visited with my sweet GiGi tonight. Her secrets? Ponds cold cream, ice cream, love, singing in your sleep, and telling it like it is.

 

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Did you notice that my eyebrows are drawn on and my hair is starting to grow back?

Christmas+Cancer= Project Diana

My sister and my husband coordinated the best gift I could ever imagine. A binder! A binder called Project Diana. A binder filled with pages of donations to various causes near and dear to my heart. On each page is an outpouring of love and support from my friends and family. I don’t have the words to express how deeply I am moved by this act of kindness and generosity.  I have been wondering how best to use this little situation I’m in to do something good. While I was wondering, they were acting, and a lot of people stepped up to the plate.

Each page of this binder is a charity and together they make a map of my heart. Here is a list of some of the places people decided to donate to as part of the Diana Project, raising over $20,000!!!!

Think Kindness

NAACP

Planned Parenthood

American Foundation for Suicide Prevention

Standing Rock

The White Helmets

Coalition to Restore Coastal Louisiana

Rainforest Action Network

National Immigration Law Center

The Nature Conservancy

Covenant House of New Orleans

Operation Diana to Save Elephants

Louisiana Himalaya Association (Lukla Project)

April and her Family https://www.gofundme.com/dd-help-a-homeless-family

 

I will be adding more to the list, such as YEP in New Orleans and something about cancer but I haven’t figured it out yet.

This gift, this binder, Project Diana, reminds me that the people I am lucky enough to be surrounded by are big-hearted people. Since the moment I was diagnosed- my sister Kendall has known exactly what to say and do to make me feel better.  Putting this together and putting it in my hands is the best gift I have ever received. I’m not good at receiving anything- compliments, gifts, help, encouragement. It hasn’t been easy during this time to be in the spotlight and to be the ever constant recipient of praise and goodwill. You can roll your eyes. I know how it sounds. It’s hard for me to even talk about how hard it is for me to receive things because any listener is like, come one, it can’t be that hard, get over yourself. Cancer has been humbling, to see the least.

For this gift I am eternally grateful.

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Moving On

I finished my last chemo treatment last week, hobbled out of the hospital, saw a surprise party in the street with all of my loved ones, and started doing high kicks and ringing that bell like I was in a parade. My hospital doesn’t have a bell to ring so my sister gave me one. The kicks were more like medium-high kicks. Alright fine, knee-high kicks.

 

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I was surprised to be a little scared about finishing chemo. It was something that was stopping this cancer in its tracks. I didn’t know for sure if it was working because my tumor hasn’t shrunk, but it still felt like it was saving my life.

Now that I’m done, I’m really done with that shit. I’m no longer worried about the cancer making a come back before my surgery. I did an MRI and mammogram on Friday and the doctor said it looks “mo better”.  He said there are calcifications which indicate a necrosis of the tumor, meaning it has shrunk in both the breast and lymph nodes.

My body would not be able to handle any more chemo–it was a lot. It was just the right amount. It did what it had to do, and I’m grateful. You get your last dose of chemo, and you want to have a party, but you still feel terrible. I’m finally on the mend and getting stronger and healthier every day.

I won’t talk politics in every post but I do still find myself relating my body to our country. We are both diseased and ugly at the moment. My country has a Trump and a have a Lump. But there can be victories big and small. Standing Rock will no longer have a pipeline through and under its river, and I will not have chemo flowing through my veins. I am losing my eyebrows and eyelashes, and my country is losing its dignity.  We might not look pretty doing it, but we will survive.

 

 

not always positive

I greet you from the other side of sorrow and despair, with a love so vast and shattered it will reach you everywhere.    -Leonard Cohen

Today I am unraveled and shattered. Yesterday I held it together and was positive. And all the days before that on this journey I have been brave. But not today. I wept my way through my 7th chemo treatment, and into the middle of the night.
Today I am sad for my country. I know next to nothing about politics- I admit I am not well educated or well-read on the matter, I don’t watch political shows. This is less about what I know to be true and more about how I FEEL- sad and scared.  I’m sad for the people in my country, on both sides of the divide. I’m sad that so many Americans were living in pain and dissatisfaction to such a degree that they cast their vote for a villain, a bigot, a bully. They were looking for anything, even something dark (or orange), to make their lives better. I wish people in this country could see how lucky we are. Can we imagine for a moment what our lives would look like if we had been born in Syria. Everyday I imagine what it would be like to be a refugee mother to a 3 and 1 year old baby. Have we forgotten that it is our privilege and duty and right to help others? When we have enough to eat and shelter over our heads- aren’t we able to give our extra away to those that have less than us. What good does protecting the wealthy (us) do -if the poor get poorer we all suffer. I might sound like a socialist, perhaps that is where my morals, ethics and values are aligned (the Bern). I think this is the way I came out of the womb- always feeling the pain and relating to the suffering of others.
I’m sad for the many families of hard-working immigrants that will now live in fear of deportation of loved ones. Their fear that their family could be torn apart. I’m sad that they are feeling abandoned. I wish I could say to them I love you, we need you, we are glad you are here. I’m sad about the hundreds, literally hundreds, of hate crimes that were committed today across our country in support of the populist demagogue we elected.
I’m sad for the LGBT community who won a long fought battle to marry only to fear their fair reward may potentially be taken from them. I’m sad for women who fear they may lose the ability to make decisions for their own bodies. I’m sad for the woman in this country whether they voted for him or not that will be violated physically or verbally because that is the example our new president has set for men to follow.
I’m sad for the sick, those with pre-existing conditions such a cancer, that depend on the affordable health care act. It’s unfortunate that most people with cancer, or other diseases, do not have access to legal medical marijuana. I’m here to tell you that it is the only thing that has brought me relief. I’m sad about the ever increasing opioid/heroin epidemic that is virally infecting our nation. (which also could be helped by regulated medical marijuana)
I weep for the earth. I literally can’t stop weeping for the beautiful mother earth. That our fight to protect her will be placed on hold in the name of greed. The wetlands of Louisiana, the Standing Rock Reservation, the rainforest, the Great Barrier Reef, the waters, the  animals, the air, the trees, the ground. We need to make a conscious effort to make personal, professional, and govermental sacrifices to protect the earth. This protection comes at a great cost that we must all be willing to step up and pay for what we take and take and take. We are running out of time and resources. These next 4 years of potentially less regulation globally (China, cough, cough) could be apocalyptical. Who cares if we call it global warming or not, we must make changes and address the damage that we have historically and currently continue to inflict. Like another rapist I know, our global capital economy is raping the earth.
I’m scared that the checks and bounds system is not in place right now to protect our country and our world and our enemies from an unstable egotistical maniac. I’m afraid of his chummy relationship with Putin. I’m afraid of what could potentially happen in the supreme court and that the progress we have made in this country’s history can be erased. I’m afraid of the people that he will choose to surround himself with and appoint to positions of power. I’m afraid that our leader will lead his own people with strength, but not all of the people. I’m afraid that his ego will prevent him from creating bridges instead of walls. I’m afraid of the enemies that he will make in this country and abroad. I’m afraid that in the face of tragedy- will he have the words and guidance to comfort and heal our wounds. Does he love us? Any of us? All of us? Or just himself, his daughter, and his cronies. I’m afraid that love has nothing to do with anything anymore- have we been naive to say the word and think it mattered?
I’m sad for the beautifully diverse citizens of our country such as african americans, muslims, latinos, the poor and disadvantaged, the disenfranchised, the mentally challenged, the list list goes on. Many people in this country now feel like their elected leader, and the many people that voted for him, do not care about them.  I’m afraid I am becoming a racist against white people. I despise guns but I’m afraid we might need a way to protect our family because I’m afraid we are closer to a civil war, a race fueled war, a third world war, a nuclear war, a war with poverty, a war of racial tension, civil disobedience fueled by a hatred for one another that is reaching a boiling point. I am magically cloaked in white privilege and inherited wealth and living on luck but my heart is rioting in the street. I’m not sure if I deserved to land in this life i was given- it feels like a mix-up.
I’m sad for the death of the optimism that the majority of the citizens of this country had when they cast their vote for what they thought would be the first female president who also happens to be a competent and well prepared candidate for the most important job in our nation. I’m sad for the conversations that parents will have to have with their children about how bullies never win even though THAT bully won. I’m sad for teachers that I know that had very real conversations with their black, hispanic, ethnic, muslim students today about their very real fears of deportation, slavery, abandonment, hatred, white supremacy, and violence. I’m sad that love lost to hate.
I’m sad for my god-family who lost their son Wilkins to death by suicide last week. I weep with them and for them for this loss.  It’s a reminder of the millions living with deep struggles that can’t or won’t ask for help. I’m afraid one of the first things to be cut will be national funding for access to mental health.
I’m sad that Leonard Cohen died today, of all days, on the day that I am already unraveled. He has helped me through many rough patches before. Today, listening to his songs and reading his poems only makes me more sad.
and finally, finally people I can admit it, I’m sad for the first time that I have cancer. Today, all day. I have always felt like my body was a bulletproof tank and now it feels vulnerable and broken. I don’t mind being bald when I am confident and brave, but when I am sad or scared I look and feel pathetic and diseased. I’m sad for my children that the mother that birthed them is replaced by a less whole person. I don’t know what life will be like after cancer but there are parts of me that will be different- some better and some worse.
Perhaps its because my body is newly full of chemo”therapy”, jacked up on steroids, and sleepy on benadryl, and insomnia-ed right now. I’m officially in menopause, hormonally challenged, with hot flashes as I type this. I’m tired and ill and week and bald and pimpled and chemo brain is real. Perhaps it’s because my babies have a stomach virus and I spent my morning cleaning up vomit while trying not to hold them and risk getting very very sick myself. When my babies are sick I’m able to step up to the plate for them, but only for them. I’m sad for the future babies that I didn’t know whether or not I wanted to have but I hate that now I can’t have them. I mourn the possibility, I see their faces sometimes.
For the first time I feel sorry for myself. I’m bummed out that on top of everything else my ass hole is broken and I will need a surgery during the one week between chemo and mastectomy when I should be feeling ok and getting my life back in order and preparing for a massive surgery with a month-long recovery. Every morning I have a laxative and stool softener induced poop that feels like it is going to rip me open and kill me. I literally have a shitty and painful and scary time with the simple act of eliminating waste.The botox quick fix has caused me to lose control of gas and I assume if I am caught at the wrong place at the wrong time, my bowels.
I’m sad that at the end of this my body with be scarred and mangled and my new boobs will forever be numb and foreign. I’m sad for my husband that our intimate life will also suffer from the scars, the numbness, the hormone deficiency, the changes, the vulnerability, the fear of recurrence, the loss, the pain, the sadness, the shame, the dysfunction.
I’m scared that every recent story I have heard of young breast cancer survivors has ended in recurrence, spreading to new organs, or lymphodema, or death, or hysterectomy, or fat necrosis from surgery, or a loved one being diagnosed at the same time, or chemo brain that lasts forever, or debilitating neuropathy.
I knew this would be a rough year, I didn’t foresee that it would be a scary and sad 4 years for me. It turns out I may have been brave enough for cancer, but I’m not brave enough to be under the rule of the evil orange despot. Today was my day to be angry, sad, scared and negative. Tomorrow I go to work figuring out how to fight hate, how to organize ourselves to make positive change without the help of our government (like we did in New Orleans/ Katrina/ Nagin), how to guide our children towards good, to teach them empathy and respect for others, how to promote and implement peace. Assuming I can even get out of bed or open my eyes post treatment.
Even though I’m sad and scared- I truly believe that what comes next will be the antithesis of what we have now. I guess we need to take a step backwards, give hate a chance to boil to the surface, let it be heard and felt and reap havok, and then we rebuild something better than we had before.
Thank you for allowing me this day to fall apart and not be an inspiration to anyone. Please, if you do not agree with my beliefs or feelings, simply stop listening to me. This is a space for me to share my story. And don’t worry- I’m going to be fine, we are all going to be ok.

Botox and Breast Implants

“I never thought I would be married to someone with fake boobs.”

Sean Fisher

 

It cracked me up when my husband said this a few weeks ago. I never thought he would be married to someone with breast implants either. I also didn’t think I would get botox. I certainly never thought I would get botox in my rectum. But that happened today. Yikes.  Hopefully my poops will be far less excruciating and the fissure can heal.  I never thought I would have a blog, and I certainly never thought I would talk about my rectum on my blog. The lines are blurred between what is and should remain private.

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Over the last few years my relationship to my breasts have changed. In pregnancy and childbirth you become accustomed to exposing your body, your “private parts” to doctors, ultrasound technicians, nurses, and midwives. Your body becomes a vessel for growing, delivering, and feeding a new person.

I was hoping for 2 natural births and ended up with 2 emergency c-sections after 24+ hours of labor. After each delivery our midwife would bring the babies to me for skin to skin contact and help guide the babies onto my breast for their first feed. Nursing a baby is both mind-blowingly bizarre and the most primal and natural thing we can do. My boobs became their boobs and they were voracious eaters. When they were hungry, I fed them, which was every 3 hours for the first 6 months. If you were around me and my babies, you probably saw my boobs (their boobs).  When I was a teenager, and the boys I knew were obsessed with boobs, I remember wondering what the big deal is. Nursing a baby makes sense, oh that’s what these are for! Breastfeeding isn’t easy but it is something that I loved doing, and I’m grateful that I was able to put these boobs to good use before losing them.

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My supply dwindled and eventually ran out in May; in June I noticed that one breast still felt like it had milk in it, and in July I was diagnosed. I am still in the mode of thinking of my breasts as utilitarian milk makers. I ask every single doctor if my children are at risk for being fed through a tumor, the answer is always NO but they squirm in their seat at the thought.

I’m grappling with the thought that perhaps pregnancy, breastfeeding, or the accompanying hormonal changes provided the environment that my body needed to grow this cancer. I’m considered a pregnancy case because I was diagnosed within a year of having a baby. The tumor is large at 10cm, and the type is slow growing, so it has been there for a while, probably through both pregnancies and nursing both babies for almost a year each.

Tig Notaro is a comedian that had breast cancer. In one of her stand up routines she says that she made so many jokes about her tiny titties that they tried to kill her. I have always loved my B boobs–they were just right for me–big enough to be there but not big enough to draw any unwanted attention.  They have served me well (except for the time they tried to kill me), and I will miss them.

 

Attitude of Gratitude

It’s been a while my friends. I think I clambed up after I wrote about my butt fissures and then realized people were reading it. The fact that anyone is reading any of this kind of gives me the willies. I could spend a lot of time meta-communicating about how weird it is to have an audience read what is essentially my diary.

I just completed my fifth of eight treatments so I’m officially over the halfway through chemo mark. I’m feeling all over the place physically and mentally. The accumulation is taking an effect and every treatment seems to get harder, but different. New side effects pop up and the old side effects overstay their welcome. I am operating at about a 40% energy level on average. Some days slightly better and some days are worse. I see how this is an isolated period of time, and I’m in it and the hours are long. I’m sure I will look back on this chemo trip as a blip in hareless time. It is a hard time but also a special time when I am open and receptive to the help of others. Being bald has opened up an opportunity for strangers to reach out to me with kind gestures, a knowing nod, holding the door, asking questions or sharing stories of their experiences with cancer.

The thing that remains consistent is the outpouring of support and love. I’m traditionally terrible at sending thank you notes and it seems impossible now. I hope y’all know how thankful I am.

Thank you for the daily notes, the cards, anonymous  postcards, text messages, voicemails, Facebook and blog comments, and the prayers. These make me smile and lift me up. Thank you for continuously reaching out to our family.

Thank you for the gift packages of cozy sweaters, fancy hats, bath salts, monster slippers, yoga pants, hats with fake hair and my initials, play dough for the kids, flowers, art, binders of cancer notes, books of all kinds, boob shaped hard candies from France, hats, personalized blanket, Ganesh, giant bottles of hand sanitizer.  These are making my life more enjoyable, and who doesn’t love the thrill of opening a gift?

Thank you to friends, parents of friends, neighbors, chefs, and strangers that have delivered food and smoothies. I’m not always up for a meal but the 3 other mouths in my house are always hungry. When you are naseaus and fatigued with no appetite it is especially hard to make dinner for your family. And delicious meals keep showing up!

Thank you to anyone who makes my kids smile. I don’t know what we would do without our nanny Becca who goes above and beyond every day. We are so lucky to have 4 grandparents and 4 siblings that live nearby and scoop the kids up for an hour or a 4 day trip. My friends that spend the night when Sean is out of town, take them to the zoo or the park when I’m stuck in bed. On one hand it’s hard to accept that I need to outsource the role of parenting- but the kids are surrounded by love and they are happy to go off on new adventures. My sweet husband has tripple duty, especially in the morning, when the 3 year old, the 1 year old, and the 35 year old babies are all hungry and snotty and need help getting dressed. Oti’s precious Montessori school has been flexible with our changing needs and the teachers are always asking what they can do for us, as if molding him into a good human isn’t enough.

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Thank you to my team of healers- my medical doctors, my non-traditional care-givers, the ones that help strengthen my body and spirit. I have some kind of an appointment almost every single day. I have a strong and competent team around me that treats me with compassion and expertise.

Thank you to the visitors- the ones that have come, the ones planning to come, the ones that are waiting on the green light from me. Last week I was in the dumpster physically and mentally- I was getting an IV in bed- and in walks a college bestie, and I lept out of bed in shock and didn’t go back in the dumpster until 3 days later after I dropped her at the airport. Mackenzie lives in Denver with three boys 5, 3, and 4 months old. On her 3 day break from her kids she bathed and fed mine and kept them laughing while I watched from the couch with tears of gratitude. This act of love reminded me how important it is to show up for people. Before I had kids I was better at this. I was a friend who showed up- even if I didn’t know what to say or do. I want to become that again as soon as I can. This year and this time is selfishly devoted to healing myself and taking care of my family with whatever I have left. I’m desperately looking forward to the time when I can pour more of myself into the world and onto others.

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Let this be a reminder that all of these gestures, the grand ones and the flash of a text message are all helping me. To know that I’m supported and loved helps hold me up in this fight. It helps our family cope. It is keeping us all smiling.

People always ask what they can do for us and I try to delegate but I rarely know what to say. Looks like y’all know better than I do what to do in these tough times. I’m currently and eternally grateful for every.little.thing