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The Legacy List

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.

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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!

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  • 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.

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Lessons on Living and Dying

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 willIMG_5089 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.bucket-269648_1920

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?

 

Good Grief

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. 

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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.

Grief and love

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?

High on my toes

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.

 

 

 

FUNdraising, If You Want

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.

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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!IMG_0567

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.

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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.

Wherever You Go

Now is the time to soften. I came to this conclusion as I lay on the mat in the first yoga class I had taken in a million years. I had been meaning to try a class at SoulShine Power Yoga, a Maggie’s Bright Side Sponsor, for a while now, but as luck would have it, I found myself in this particular class on this exact moment. My dad always quoted Jon Kabat-Zinn by saying, “Wherever you go, there you are,” and indeed, there I was.

Heart cracking openI lay on my mat at the beginning of class in a heart opener pose. The instructor spoke about allowing your softness and vulnerability to be felt. She spoke of releasing what you don’t need and letting in what you do need. I set the intention to release the protection that I have created around myself. I felt my heart crack open a little.

Then I cried.

I have always heard about people crying during massage or yoga. It’s never happened to me. I don’t know if it’s because I’m a stone-cold bitch. Or because I don’t allow myself to be vulnerable in that way. I know I put all of this heart and emotion out into the world and here on the blog, but if you met me on the street and asked me how I’m doing, I would likely smirk and say something sarcastic about how super I am. I mean, ask anyone who has actually seen me on the mean streets of Richmond, VT. I’m super.

If I walked around allowing myself to be vulnerable and “soft” all of the time… actually, nevermind, I wouldn’t be able to walk around doing that. I would just be a pile of salty tears, crumpled in the corner. I would be a blubbering, snotty mess of a human being. It wouldn’t be pretty. And I’m afraid that without my sarcasm, jokes, and walls, I would become so vulnerable that the tears would start, and I wouldn’t be able to make them stop.

Dana-Farber Cancer Institute
My new home away from home.

The next chapter of my cancer journey is unfolding. My cancer journey. I’m resentful of that expression, but I don’t even know what else I would call this. I am starting a clinical study at Dana-Farber Cancer Institute. The study is trying to determine if adding immunotherapy (Pembrolizumab) to chemotherapy (Eribulin) makes the chemotherapy more effective. I FINALLY hit a stroke of luck and got into the trial group (both drugs) and not into the control group (just chemotherapy). The treatment is on a three week cycle; week one and two I would receive treatment and week three I would have off. Every treatment will happen at Dana-Farber in Boston since the study is so new. This may be a hardship, but in my opinion, it’s worth it. I really think that immunotherapy is the answer.

It may be my miracle.

It has been exactly two years (to the day) since my world was turned upside down with this cancer diagnosis. I’ve experienced the highs, the lows, and the doldrums. I have immersed myself in the present. Wherever I’ve gone, there I have been. I have become the warrior I need to be. I have become the bright side. I can also appreciate the dark side. I know that the only way out is through the center. I can see that there will need to be some sacrifices in this next chapter.

Since August 30th when my doctor came into the exam room and said, “I think you should go back to Dana-Farber,” I have not been able to escape the thought that this is what my dad always wanted. My dad was with me the first time I went to Dana-Farber. He really wanted me to get treatment there. Every time I had a bad scan he would say, “Let’s go back to Dana-Farber.” The first time we were there, he exclaimed that it would be “so cool” to go to Boston for treatment and that we could make it fun and get dinner and it would be so great! Remember when I went I first went to Dana-Farber and met Dr. Christina Herold aka Dr. Amy Sedaris? Well, I met with her again a few weeks ago and she remembered me and she looked at my Aunt Sue, who accompanied me on my trip and said, “I haven’t met you before.” Well, doctor who I haven’t seen in a year and a half and have only met once, you are classy AF for that level of patient care. My dad would be impressed.

Fortunately, he will be with me in my heart during every trip. That will soften the burden a little.

You know, I think I’ve been building calluses around my heart for two years now. It’s not that I’ve become complacent, it’s just that I’m trying to get used to this heartache, this grief, and this stress. I’ve become familiar with it. I’ve been strumming on my heart strings, building calluses on my proverbial fingertips for a while now. I’m hardened to the idea of where I am. But I don’t want to completely lose feeling either. The way I felt in yoga, when I released the tight mantle of protection is not a feeling that I can constantly maintain. It is too vulnerable and exposed for me to be that open every day. I have shit to do and people to raise. I won’t spend my precious time feeling all of everything when I have this movement. But I think it is a feeling I need to visit more often.

Being vulnerable and soft and expressing sadness in front of other people is not something I want to do. I don’t like it. This summer, I spent an extraordinary amount of time crying, nay sobbing, in front of people. My dad dying was my last emotional straw. But then I stopped, abruptly. I can’t explain why. Maybe my well dried up. I built a protection around my heart so that it would stop getting battered. I listen to the comedy podcast 2 Dope Queens when I’m driving or walking, so I don’t even allow myself to go to places of sadness when I’m alone. My sadness mostly hits me at night, in the dark, after everyone else is asleep and there is only me.

There is no doubt that I am a warrior. I made a decision on this day two years ago that I would continue to move forward in my life living big and bright.

I continue to want to embrace the fun, the light, the love. I need to find balance in allowing that softness in my heart, but also protecting my heart enough to get through the day. I want to slay as a new business owner. I want to get on The Ellen Show to promote Maggie’s Bright Side Cancer Card. I want the doctors to tell me that there is No Evidence of Disease and that I can take a break from treatment. I am recommitting to myself.

Wherever I go, there I am. I will be present. Be alive. Be soft. Be love.

Wherever you go, there you are.Jon Kabat-Zinn

 

Maggie’s Greatest Hits

If you have children under the age of 10 then you probably have watched the hit movie sensation, “Trolls,” and you probably have memorized the words to every single song on the soundtrack. I’ve joked that Poppy is like my spirit, but animated, that, “I Will Get Back Up Again” is my theme song. Haven’t heard it? Give it a good listen.

See what I mean? Reminds you of me, right? Me too. But it sort of feels like a game of Whack a Mole. The hits keep coming. I’m over here thinking, “But seriously, I’ll catch a break with this scan, right? Because the universe isn’t that cruel, is it?”

Well, let me tell you something, life sure as shit is that cruel. It’s a stone cold bitch.

It turns out that instead of “catching a break,” I will be heading to Dana Farber for a consult. Praying  Cautiously hoping for a clinical trial, and if that doesn’t work out, starting one of four new chemotherapies at the end of September. I’m lucky that there are so many treatment options. (Insert emoji with the straight line mouth)

I am pissed. I can’t even begin to unpack the amount of sarcastic remarks I want to make and I certainly don’t plan on giving away any material I’m I could use during my stand-up class at Vermont Comedy Club, but I don’t have a single positive thing to say. At least I’m funny.

The short story is that my pesky liver lesions that have always been shrinking, but never going away, have taken a turn in the opposite direction. That means they are growing. That’s right, they are getting bigger. What fresh hell is this? I have no pain or symptoms and, in fact, they aren’t even that big (3.2 centimeters is the largest) but what in the actual fuck?

Life sure does feel unfair right now!

So, at some point, I imagine Dana Farber will call me and give me an appointment in the next few weeks, and I’ll head there for the day to find out what is next. In ironic news, my dad urged me to go back to Dana Farber ever since my recurrence occurred AND he was with me the last time I went. So, this shouldn’t be traumatizing at all, right? No, I’ll be fine.

image1 (3)The real kicker is that I found all of this out on the First Day Of School for my adorable and resilient children. Can you actually believe that at some point I have to tell them about this? I have to devastate them, one more time, with news that I just have to keep taking medicine for a while longer to try and get rid of the cancer that just won’t quit. I’m going to try to preserve their ignorance for a few weeks and let them enjoy their first few weeks of school. There is no feeling quite like the weight of bad news that will hurt my children, yet I must tell them what is going on. Please refrain from sending loads of food to my home as that is a huge trigger for them.

I know what you are thinking, the children will be okay because they are strong, like their mom, and children are resilient. While I can appreciate the sentiment, I ask you this- why do my little kids have to be so frickin’ resilient? This is NOT fair. Are they building up resilience points so that when I do finally die they will be able to manage their emotions? They have handled the diagnosis, the treatment, the recurrence, the death of a close relative… What the fuck is next? Shouldn’t the children, at least, catch a break? Who is running this shit show anyway?

Honestly, I can’t even anymore.

This is not a call for help. This is a rant. This is what happens in my head when I get bad news. I don’t want or need anyone to encourage me to be positive right now. Sometimes, you just have to get the lead out, you know? Truly, I’m not surprised this is my news. This is par for the course. On the same day that I got this stellar news, I also received a quote for replacing the original windows in my 1890s home that we just bought. The quote is for $34,000. Are you fucking serious? For GD windows? Jim was like, screw windows, let’s go to Colorado and Aruba and I was like okay, but when I die, you and the kids need somewhere with windows to live, so let’s talk about a compromise. These are our conversations now.

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Then, this morning guess what happened? I dropped my phone and the screen broke. Because of course it did, that’s why. FML.

So anyway, to summarize: Don’t bring me food. We’ll need it soon enough, so hold your horses. I really want to protect my children from this news for as long as I can! If you really want to help here are two ways to do it:

  1. Share the news of the Cancer Card with someone you know in Vermont that has cancer. Cards will be released on October 6th at the Women’s Health Conference at the Sheraton and we have tons of amazing sponsors on board! While you are at it, tell everyone you know to “like” Maggie’s Bright Side Facebook Page.
  2. Tell a business about the Cancer Card and get them to become a sponsor!! We are taking ANY and ALL businesses. I want EVERYTHING from restaurants to pedicures to live music opportunities to adventure experiences! Send them to my website where they can fill out a Business Partner Form!

Lastly, I want to thank you all for always listening and for coming back again and again to read my story. It really means a lot to me and helps to fill me with hope and purpose. My new Chinese Medicine Practitioner says that despite the stage of my disease and the amount of chemotherapy I have had, I have a surprising amount of qi. Maybe I generate some of that on my own, but as you know, I believe in the power of love. And just like that, I’m quoting Huey Lewis and the News, so I’ll leave you with one more song…

And rant over.