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.
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.
Did you notice that my eyebrows are drawn on and my hair is starting to grow back?
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!!!!
American Foundation for Suicide Prevention
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.
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.
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.
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
“I never thought I would be married to someone with fake boobs.”
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.
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.
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.
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.
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.
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