I have a guest writer this week. I asked this author if I could publish her piece of work and after balking, she demanded I double her allowance for payment and then gave full publication rights.
I have four blog posts started and unfinished because I can’t get my head on straight. Anyone else feel unsettled? I know it’s not just me. I’ve got this weight of pending business sitting on my chest. It’s anxiety, I’m sure, but due to what? My life contains such a collection of stressors that it feels like no one person could possibly hold it all. But so many of us are managing just as much. I feel I’m grasping at straws here. Trying to make sense of this crazy, big world, while trying to maintain sanity in my tiny household microcosm.
Do you feel that way too?
My attention span is what I imagine it might feel like to have ADHD. I have so many tasks I’m trying to accomplish in one day that they all only get half completed. Don’t misunderstand me, this isn’t a cry for help because I’m too busy. It’s just that life is so overwhelming to me right now.
I have another CT scan coming up. It’s the first one since I began this new chemotherapy. Although I feel quite confident this chemotherapy is working, I feel more anxious than I have felt in a long time. I guess it’s been a while since I had a good scan. May of 2017 was the last time I had a scan that suggested my cancer was stable. My dad was alive then. Since then, my cancer has been growing.
I’m not worried; I’m just anxious. I feel confident that this chemotherapy (Gemcitabine or gentle gem, as they call it) is working. I have noticed changes in my primary tumor that seem positive. I feel relatively good- just tired from the accumulation of chemo in my body. I can handle this chemo. I think. I mean, I can handle it as well as anyone faced with a lifelong prescription of toxic IV medicine could.
While I say I feel confident that this chemotherapy is working, as I lay on the massage table the other day with a chunk of Auralite on my forehead to help connect with my spirit guides and sweep away my mental debris, I realized with sudden clarity that all of this anxiety is coming from fear. I am petrified of so many things right now that I can’t think.
I’m afraid I don’t know my own body. I feel good. I look good. I am functioning fairly well for a person with this degree of disease and with the longevity of my chemotherapy treatments. I feel like my cancer is going away. I don’t feel disease. But I never felt disease. I never felt bad. Maybe I’m wrong. Maybe the cancer is worse. Every ache and pain, every time I can’t breathe deeply, every moment my digestion seems off or I get a headache, I consider if it’s normal bodily functions or cancer. I’m frozen, teetering on the edge of a bottomless precipice and I’m profoundly afraid.
I’m afraid for myself, but then that fear spawns other fears.
I am afraid that my children are going to be shot at school. I don’t understand why AR-15 rifles are available to purchase. I find myself arguing with people on Facebook or listening to the news and I become so enraged about gun control and protecting our children that I feel out of control. The news has become so incredibly anxiety provoking to me because I’m afraid I’ll hear something else that will make me even more scared, that instead of pressing play on my preferred news source, the Up First podcast by NPR, I instead listen to My Favorite Murder. Which is a comedy podcast about murder. Actual murders that have occurred. How fucked up is that? I’d rather listen to stories about murder than listen to our daily news. Murder comedy is less upsetting and triggering to me than the news. I am more afraid that my children will be murdered at school than by a serial murderer. I am more afraid of wars, and budget cuts to education and health, and racism, and animals going extinct and our president than I am afraid of murder.
I’m afraid of what you might think of me. I write all of this stuff and I bumble through this life trying to put one foot in front of the other and do the right thing, but I’m bound to screw something up. I’m afraid I’ll say the wrong thing, or do the wrong thing. I’m afraid of your judgement. And of mine. I’m afraid of losing human connection but also of having too much human connection because it’s exhausting and draining.
I’m afraid I might snap. When you think of how fragile the human mind can be, it truly is a miracle I haven’t yet. I mean, just how much can one person take? That’s what happens, right? Sometimes people just snap.
This world is scary. It seems to be getting worse with every school shooting and every press conference. And when I think about how awful everything is, it makes me wonder what the fucking point of life even is.
There is so much ugliness. So much anger and so much to be terrified of. This is where I am. This is how I’m doing. This is all I have for you right now.
I guess that’s why I’m not producing content for this blog right now. Because all I can think about is when all four members of my family will be together under my roof of my house. So I don’t have to be scared. And when they are all here and I can look out from the kitchen and see my kids choreographing dances to P!nk and my husband tending to the fire in our fireplace, that’s when I know that everything is fine. That I am well and that they are safe. But beyond these walls, I don’t have that security.
So, I hold my breath. Maybe I’ll find some relief on Wednesday, after I get the results of my scan and maybe I won’t. Maybe I’ll still be anxious because the world won’t be fixed and in that case, you can find me in the kitchen, waiting for my family to come home.
Bye 2017. You sucked. Month after month you provided heartache and stress. You will go down as one of the most horrific and horrendous times in my life. You came in like a lion, gave a mid-year roar and then sucked a big fat one on the way out. Fuck you.
I have no idea what could happen in 2018 that could possibly be worse than what has happened in 2017, but I bet there will be something. Life is full of surprises. Half of those surprises are giant shit sandwiches wrapped in slimy, old lettuce that you must eat in order to live. So get ready.
Just to recap:
January 2017– I got news of cancer progression in my pelvic bone. Trump was inaugurated.
February 2017– Started new chemotherapy (Taxotere and Carboplatin).
March 2017– Ongoing stress around selling our home.
April 2017– Our dog, Lily, died the day before we moved into our new house.
May 2017– This month was actually okay.
June 2017– My father died in a tragic accident.
July 2017– I actually don’t really remember that month… I was in a daze of grief and confusion.
August 2017– Learned that cancer had progressed in my liver and was sent to Dana-Farber Cancer Institute to see if there was a study I could enter into.
September 2017– Found out that I got into the study and started going to Boston once a week to take chemotherapy drug, Eribulin and immunotherapy drug, Palmocicluzimab.
October 2017– Boston trips, managing side effects, supporting children through this transition.
November 2017– Continued Boston trips only to learn that my immunotherapy cocktail did not work. My cancer had almost doubled in size in my liver. Doctors get serious about next steps and end of life planning.
December 2017– Started yet another chemotherapy, Gemcitabine. The jury is still out, but the side effects seem totally manageable.
So, pretty shitty all in all.
But you know me. I’m not going to squander my time by counting life’s wrongs. I’m here to tell you what happens next. Besides the obvious: live my life. My resolutions are more like goals. Warrior goals. Many of them can’t be measured, but they provide a basic idea of how I want to live out my life. Whether that life is 2 or 20 or 40 years, we cannot predict, but I plan to be a warrior, come what may.
So here they are, my 2018 Warrior Goals:
- Develop better self-compassion and self-love.
- Smartphone less.
- Build my business, Maggie’s Bright Side, to be as strong as I am, but build it to last longer.
- Do more public speaking.
- Be a role model for my children so that they can know how to carry themselves with grace, strength and badassery.
- Help those that love me feel more comfortable discussing death. Believe me when I say I’m the first person outside the Grateful Dead show with my finger in the air waiting on my miracle, but meanwhile, I’ve got a backup plan.
- See more live music.
- Get better at playing the guitar.
- Express my love and gratitude.
- Dance more.
There you have it. It’s simple. Be kind. Love yourself. Dance. Hope for miracles.
Here it is. My bucket list.
Writing a bucket list when you already take life by the massively huge horns feels kind of funny. These are more like memories I want to make with my friends and family. It’s a Legacy List, a memory-making list, if you will. In fact, I’m erasing the original title of this blog post and replacing it with Legacy List, because if I don’t get through these, I hope my friends and family will keep on keeping on with the list. Except kids, you can’t go see Two Dope Queens.
I have already begun. When I think back over the past two years and even before that, my timeline is bedazzled with with rich and exciting experiences. I took the best vacation of my life with my family in Mexico. I met Michael Franti 3 times. I had a dream trip to Paris. I’m about to perform in my first stand-up comedy show after taking a class at the Vermont Comedy Club. I’m learning to play the guitar. I started a business where I can offer discounts to other people with cancer when they apply for the Cancer Card. This is not a life I have let pass by. I am a thriver. So let’s find out what’s next!
- Yoga Retreat with my mom
- Disneyland or World with my family
- Aruba with my family
- All-inclusive vacation with my family
- RV trip around the US
- Spend an extended period of time on Cape Cod in the summer
- Go see live music every month
- Go to Nashville
- Go to Hawaii
- Go on a girls trip with my high school girlfriends- somewhere hot and fun!
- Love every single room in my house and not feel like there is a major construction project anywhere
- Go to a shooting range
- Smash some shit- but I don’t want to have to clean it up.
- Be on the Ellen Show to promote Maggie’s Bright Side Cancer Card!
- Go see Two Dope Queens
- Take Zoey to an AWESOME concert
- Go to the Rockefeller Christmas Tree
- Turn 40 and have an EPIC birthday party
- See Hamilton
- Family Reunion with the Turner Family with ALL of the cousins and their children.
That’s all I can think of for now. I will be posting a new page on my website called The Legacy List. It’s likely I will add to my list as time passes. I will also cross off items I complete. So let’s get started continue making memories. Let’s keep on crossing things off of this list. Let’s keep living and enjoying and loving. That will be my legacy.
Maybe this cancer is not teaching a lesson about learning how to live. I do that well. Everyone can see that I know how to live well. I love and embrace and say “yes” to life. That is not a question. Maybe this cancer is teaching a lesson about how to die. Let me be clear, I’m not giving up. I am grappling with what the doctors have told me and I am processing it. There are no white flags being waved.
I’m going to die.
We all are, of course, but my time will come before it’s supposed to, whatever that means. I’m probably going to die before my children graduate from high school. Maybe before they graduate from middle school. I’m not going to die tomorrow or the next day, but maybe next year… or maybe the year after that.
I’m going to talk about dying to you. To the adults in my life. I’m only going to talk about dying a little bit to my kids, but I will talk to them about it too. I’m going to talk about what I want at my funeral and what I want for my children and my husband after I die.
I’m going to start with the swoopers.
You know, the women who will swoop in to take care of my husband and kids after I die. Listen ladies, because you’re probably already reading this, it’s okay- they’ll need someone, but believe me when I say there is an army of strong, protective women ready to fully vet you and make sure you are worthy of parenting my kids and partnering my husband, so you better come equipped with a rad fucking spirit, a strong backbone, a great sense of humor, and a giant heart. I want you to swoop in because goddess knows Jim won’t be on the hunt. And if you hurt them in any way, you bet your ass I’m going to haunt your every waking moment.
When I think about living, I focus on what I will do. It’s loud, energetic, and active. When I think about dying, I imagine what I will leave behind. My thoughts are centered, deliberate, and calm. When I’m gone, what will my husband and children, parents and siblings, friends and family still hold of mine? What will my legacy be? I want resolution in my relationships. I want my friends and family to know that I love them and that love is eternal, so that won’t go away ever. Only my body will. Which is sad and hard. I want to laugh all the way to my grave. But I don’t want an actual grave- just a place where you can go and remember me. There is an episode of This American Life called “One Last Thing Before I Go” and in it there is a story about a phone booth in Japan where people could go to talk to the loved ones they lost in the tsunami. I love this idea. I’ve contemplated getting a phone booth in my backyard so I can talk to my dad. I just love the thought of having a place, you know?
I want to tell this girl from middle school that I was wrong when I told her I didn’t think we should be friends anymore in the 7th grade. My self-esteem was so low and I thought I would get more friends by not being friends with her. I was wrong and I’m pretty sure that I threw away a great friendship so that I could be accepted by a different group of people that I wasn’t really even accepted by. I should have said this a long time ago. I have no idea how to prevent my daughter from making the same mistakes I’ve made and that is terrifying. I may not be around to tell her this story when the time comes.
I still have a lot of living to do, but we all need to get used to thinking about dying, because it’s coming too. As I know from my dad’s untimely and unexpected death, you never know when you are going to die. What will you leave behind? Think about it.
My cancer has progressed. The liver tumors have practically doubled in size since my last scan. There is new tumor growth in the lymph nodes in my upper abdomen and in my sternum. I feel fine. At times, I have some shooting pain in my breast and in my rib area, but it’s short lived and not too bad. My time in the clinical trial at Dana-Farber is over. I will resume treatment in Vermont and will try additional chemotherapies that I haven’t tried yet. The first, I hear is easily tolerated. Maybe one of these chemotherapies will do the trick. Maybe they won’t.
The doctors say that my cancer is resistant to chemo, which I had surmised. They don’t know why. Doctors at Dana-Farber are going to take a biopsy of my tumors to determine their DNA, which may help figure out how to treat my specific tumors. They will also keep monitoring studies to see if I meet the criteria for anything. Dr. Herold from DF said that it is not time to give up on the chemotherapy yet, but that if there are things I have always wanted to do with my life, I should do them now. She said to focus on my family, go to therapy, make great memories, and talk about what I want for the end of my life so that it’s clear.
Okay. Will do.
I’ll make a bucket list.
It feels so cliche. I am doing it because I have a legacy to leave and memories to give my children, family, and loved ones. This bucket list is focused both on my exuberant life, and my deliberate death plans. I’m making it. I have places to go and things to do. I may not make it to everything on my list, but hopefully I’ll get pretty far in solidifying my legacy. Maybe this new chemotherapy will work, and maybe it won’t. But I need to make a legacy that will live on even in my absence.
Morbidity aside, I wish this was normal. I wish talking about what it will be like when you die wasn’t so taboo. I mean, wouldn’t it be nice to know what your loved ones wished for in their absence? Don’t you wish you could live your life with absolute authenticity in your relationships? With a crystal clear conscience? With nothing left unsaid? I do. If death brings authenticity and clarity, is it still something to be feared?
I turned 38 this week. I honestly feel ambivalent about birthdays. I certainly don’t want to do the dishes or anything, but I don’t need a fancy party either- until I turn 40, then watch the F out! My father’s death this year has drawn a veil over pretty much every significant event. His absence in the stream of birthday phone calls on my daughter’s birthday was painfully obvious and I knew that void would not be filled on my “special day” either.
As a parent, my children’s birthdays feel more significant than my own. Their birthdays were specific days that my life changed forever and watching their progression year after year is so beautiful and monumental but also fleeting and cursory that the emotions invoked are over-powering. My parents divorced when I was a teenager, but my mom told me that she and my dad always connected on my sisters’ and my birthdays. I’d never thought of this before, but of course, it makes perfect sense. If children are like pieces of your heart walking around outside your body, then children are really made up of all of these little chunks of love. And if love is what connects us, then parents of children (bio, adopted, foster, step) will always be connected by those children- regardless of the status of relationship.
I spent the last few hours of my birthday sobbing uncontrollably because of the deep, dark chasm left by the loss of my dad.
These moments have decreased since my dad first died in June, however when the wave of grief hits, it’s swift and unavoidable and I am reminded that the power of this ocean is stronger than any human being. As humans, we have the agency to decide if we are going to fight against the current of the ocean or allow ourselves to be carried through the waves. This is hard for me because I hate crying in front of people, but if I don’t allow myself to move through the emotion, it doesn’t go anywhere. Humans need emotional outlets.
When I first started working with my Chinese Medicine Practitioner, she said that there was dampness mixed with heat causing phlegm in my liver/gallbladder area. This phlegm can be caused by Liver Qi Stagnation which is emotional stagnation. She said that all emotions, but especially anger, are stored in the liver if not properly moved. So, I’ve been working on moving my emotions and searching for anger outlets. Allowing each emotion it’s space and expression before moving on. I’m letting myself be carried through the waves on this powerful em-ocean (see what I did there?)
So that sobbing on my birthday? That was okay. That was normal and healthy.
Even though it’s not my favorite thing to do, it has to be done. The only way out of this standoff between my feelings and my will is through.
I’m not quite sure how to get through though. I’m not quite sure I want to. These emotions connect me to my father, and also to the me that existed before my cancer diagnosis. I have a friend who has suffered multiple miscarriages in the past few years, and who then suffered the loss of a close relative. I remember that she said that she felt like she’d been grieving for years and I’d agree that she has. Life before loss is easier. I’ve been told that the loss doesn’t get less painful, but that the intensity of the emotion might lessen after time. Something important to you doesn’t just disappear. It’s with you always.
There have been many discussions on, “How to get through the holidays without my dad.” My sisters, my aunts, my step-mother, my cousins, my mom… We are all trying to figure this out. We have wondered if we should just ignore the holidays- If we should all retreat to our in-laws. Or if we should all be together. The plans are not nailed down yet, but in every conversation I have, I am always thinking about how I want every moment, every holiday, every time memories are made to be as full as it can be.
Time is not a luxury I can count on.
I have become very practiced in embracing the moment. Staying in the present and soaking up what is happening NOW is how I try and live my life. I open my arms to opportunity and I cherish the adventures I get to have with my family and friends. When I think about the pain of this holiday and the possibilities of next year, I do so with trepidation. I believe I will be around next year, but you just never know, right, Dad?
Of late, I can’t help but notice all the breast cancer bloggers I follow emphasizing that the five year survival rate for Metastatic Breast Cancer is 22%. That means that 22% of all people diagnosed with Metastatic Breast Cancer survive for five years or more. I’m 2 years post diagnosis. Even though I know I can surpass this timeline and plan to be part of the 22%, the best laid plans often go awry. I wonder if I’ve communicated clearly how much I love my friends and family. And why I love them. I don’t want anything left unsaid. I constantly think about how those closest to me will cope with my death. My husband. My sisters. My mom.
I wonder how my kids will remember me.
Will they idolize me like I idolize my dad? What will holidays be like for them when I am gone? How can I pass on the idea that they should embrace every opportunity to make memories, even when they are the saddest they have ever felt? Who will be attuned to them like I am attuned to them? How will they heal from the deep, dark chasm? I am 38 and this lesson doesn’t come easily to me. They are children.
Life will never be the same. Holidays will never be the same. Because now, instead of my dad, I will have only the memory of him. But those memories contribute to my good grief. I am moving through my emotions, uncontrollable sobbing included, and I will keep making as many memories as I can.
The weekend of October 13th, I traveled to New York City with my son and friend, Mary-Ellen, so that she and my sister, Sarah, could participate in the Avon 39 The Walk to End Breast Cancer. They walked 39 miles in two days- 26.2 the first day and 13.1 the next. It’s a lot of walking. You may think walking is no big deal, but the blisters on their feet tell a different story. However, the excitement of the event outweighed their pain and suffering.
Even though they were stiff and sore by the end of the first day, they signed up to do it again next year. They will be walking in Boston, in June, 2018. Anyone want to join the #maggiesbrightside team? The NYC walk raised 7.6 million dollars in 2016 and that’s just one city. Avon sponsors the walk in Boston, Houston, Chicago, DC, San Francisco, and Santa Barbara. Additionally, some of the focus of their fundraising goes toward the needs of people living and thriving with Metastatic Breast Cancer. Metastatic Breast Cancer is grievously underfunded. Right now, only 2-5% of money raised for cancer research goes towards the study of metastatic breast cancer. We need more research and more funding, so we walk.
My husband, Jim is participating in the Real Men Wear Pink Campaign. He has been wearing pink every day in October to raise money for the American Cancer Society. The money he raises will be used on issues spread across prevention, early detection, research, and patient support. Jim has been so enthusiastic about wearing pink and even though I’m making fun of him because he’s not even in the top five for fundraising, he feels good about what he’s doing and looks good doing it!
I find fundraising tricky. It’s hard to figure out where the best place to put your money is. Will your money go to impact the things you care about? Is it worth it to even donate? Well, here’s how I feel about it in terms of cancer treatment: The world needs prevention services, research, patient and caregiver support, and much, much more. So, you just have to figure out where you want your money to go. If you’ve heard me speak, you know that early detection wasn’t something I could tap into. I didn’t have cancer, and then suddenly, I had stage 4 or metastatic breast cancer. My doctors say there was really no way for me to have known about this before I did, but what does matter to me are patient support and research, because those are the things that will make a difference in my world.
I also think fundraising for other cancer related things is totally great! Mary-Ellen has done multiple walks and runs for breast cancer and other cancers including the Avon 39, The Donna Marathon, and runs for the Leukemia and Lymphoma Society. My favorite fundraising place for Metastatic Breast Cancer is Metavivor and you can even sign up to the Amazon Smile program and donate to Metavivor Research and Support Inc every time you shop.
Obviously, I’m focused on cancer patient support so I’m fundraising a lot for Maggie’s Bright Side Cancer Card. We have had 2 fundraisers now- a Calcutta that took place at the Moose Lodge in South Burlington and a donation yoga class held by sponsor SoulShine Power Yoga! I feel so fortunate that community members stepped up to organize and hold these Kickoff Fundraisers and together they have raised nearly $4,000 to help Maggie’s Bright Side get off the ground! There will be more fundraisers to come, so don’t worry. And if you have an idea for one, I’m all ears.
What I’m saying is, you don’t have to donate to everything you see. In fact, you should only donate to the things that are near and dear to your heart. Maggie’s Bright Side will be posting about fundraising- sometimes for Maggie’s Bright Side, sometimes for other organizations and charities that Maggie’s Bright Side believes in. Donate only when and if it feels right for you. And if you want to join a super fun Avon 39 Team, I got you covered. Your support and presence are just as valuable as your donations.