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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. 

Love and Birthdays_1

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.

heart-donate

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.

broken iphone

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.

Wounded Spirit

I did not expect that I would have a second course of chemotherapy so soon after my first. I thought I would have more time to enjoy life before stepping back into treatment for my Whack-A-Mole cancer’s reappearance. And I definitely did not think that during that course of chemotherapy I would be losing one of my biggest supporters. A guy who understood me and allowed me to spread my wings and work through my issues at my own pace. A man who guided me through adolescence and into adulthood with the patience of a saint. My dad recently died in a freak accident. He wasn’t sick. We weren’t expecting this and there is no way to brace for this shock or prepare in any way. He was there one minute and gone the next. I feel broken. And broken-hearted. My body aches and I can’t think straight. I find myself barely able to breathe. I have never known pain and loss like this. I feel gutted, like my insides have been removed and there are all sorts of holes to fill, only it’s impossible to fill them, so I’ll just have to exist like this now. I am incomplete.  

Grief takes over at random moments in the day and I find myself hunched over on the couch weeping into a pillow. As I walk through my house, I think, “What if just picked up this flower vase and threw it through the window?” Reality doesn’t make sense to me- what is a window and what is a vase if my dad isn’t here. You know what the worst place to go to when you are consumed by uncontrollable frustration is? Costco. I went four times last week.

I got to delay chemotherapy.

This opportunity was offered to me by my oncologist who assured me that chemotherapy works best when you are rested, nourished, and with your spirit in good shape. I haven’t had chemo since June 5th. I feel bitter and resentful that I got to delay chemo for my terminal illness because my dad died. Aren’t I lucky? #blessed? So, consequently, my body feels a little better, but will my spirit ever be in good shape again? I don’t know.

Many people have expressed that they don’t want me to lose my positivity or spirit because of this. I know. I don’t want to lose it either, but this is hard. This is gut-wrenching. This has me questioning everything. Karma, God, life. I just don’t know how much more unfair life can get.

Did I do something wrong? Am I being punished?

At times, it feels like I’m being tortured alive. It feels like there is a dark cloud following me and my family and at the first glimpse of sunlight a storm erupts. I don’t know the limits of my own strength, and I don’t know if my family does either, but I wonder which straw will be the last we can support.

At the same time, I look at my husband and children and know that I’m lucky to have them and fortunate that we are able to teach our children about love and compassion. I’m certainly building resiliency in them. But do they have to be this frickin’ resilient? I wish they didn’t. I’m reminded that in the future they will have the tools to cope with multiple life scenarios. That they will have the compassion and life experience to navigate many roadblocks. I try to focus on that positive possibility as I hold their sobbing little bodies to try and soothe them, and as I lay with them at night to help them fall asleep.

Zoey and Dad

I wonder if I’ll even be there to watch them grow. And I feel the pain and hurt that I am experiencing missing my dad, and I know they too will experience this pain. Sooner or later. Let’s hope for later. I need to nourish their innocence, resiliency, faith, and hope as much as I can. Although I can’t pinpoint a time, I imagine that my parents nourished my resiliency and faith and that’s why I am who I am- or who I was 4 weeks ago before my father’s death.

I think about how my dad was really clear with me about how he did not want me to die before him. He hated when I spoke, wrote, or joked about my own death. But I did it anyway, because when has my dad ever been able to control me? I always thought that if I died first his heart might break so fast he might die too. Maybe that is egocentric, but my dad and I- we were pretty tight.

He was one of my favorite people.

So, when I think about this screwed up universe and my dad not wanting to die before me and I’m trying to reason with this whole situation- what do they call that? Bargaining? Anyway, I think if, “Everything does happen for a reason” which some people think is true (eyeroll!) then he was needed elsewhere to help cure my cancer or alternately, I’m going to die and he will be a comfort as I cross into another realm.

Harsh. I know. I’m not giving up. It’s just that my inner spiritual gangster has taken a hit.

I don’t want this to break my spirit. I imagine that my positivity will return some day. I mean, I have big plans. The Cancer Card is taking off. I have stickers available and new t-shirts coming soon and I am making connections left and right. I plan to build my legacy and make it work. Don’t get me wrong. I have plans. I mean, how many more nights of crying until my eyelash-less eyes are practically swollen shut can there be?

Some things you can’t control. Like who gets to live or die. My “spirit” has been inside me long before my cancer diagnosis was declared. Life experiences impact who you are as a human being. My parents and others in my life helped equip me with the tools to cope with this kind of tragedy, but I’ve never had to experience the death of someone so close. I will never be the same.

Me and Dad at Wedding

For now, I am just trying to get through my days. My oncologist suggested I continue to get up, bathe, nourish myself and parent my children. Basic. I can do it. I’m going through the motions. I’m marginally participating in life. I am attending events where the elements of fun are there, but internally I am not quite at a place where the fun is reflected in me. I will get there. Every once in awhile I get a glimpse of happiness. I’m told time heals. I’m also told the pain will never go away, but it will get easier.

Maybe I’m not broken, but my spirit is wounded. Wounds take time to heal.

A Note About Lemonade

Since I released The Cancer Card, I’m hearing a lot of, “You sure are making lemonade!”

I sure am friend, lemons are quite sour and I prefer a little sweetness in my life. I need something to offset the suckiness of a chronic illness. Do I think The Cancer Card is going to cure my cancer? Fuck, no. But it sure will make having cancer easier. I’m in this for the long haul or until they find a cure, so I’d like to stave off any resentment that could build and this is my attempt.

So here is the truth about the lemonade I’m making.

A Note About Lemonade

When I bare my soul to the internet, exposing my deepest emotions and fears, it offers people the opportunity to make observations about me that may or may not be true. People often comment on my, “Positive outlook on life,” and how, “I always have a smile on my face.” And these two things are, in fact, fairly true. But make no mistake, I have a dark side too. Additionally, I want to be extremely clear that cancer is NOT the, “Best thing that ever happened to me.” Also, I’m doing chemotherapy wrong because I’m apparently supposed to be seeing it as a tool, but I DREAD getting my infusions and HATE that the side effects are making me weak and tired and I can’t do all of the things people who are not going through chemotherapy can do. No matter how much lemonade I make, I’m still struggling folks.

Let me take it from the top.

Having a, “Positive outlook on life,” is my personality. I have always had a positive outlook on life, but I’m not an optimist, I’m more of a realist. I have always had a glass half full perspective, but I’m also a cynic. This is a weird combination that contributes to my hilariously morbid sense of humor. In one hour of yoga, I can imagine the peace bringing me far along in life so that I can watch my kids grow up and also imagine that same peace easing me into death in a few short years. Wait, that’s not funny… Whatever.

I always have a smile on my face because my concentration faces and grumpy faces give me a triple chin. Also, you would think people would leave you alone with those faces on, but they don’t leave me alone, because I’m the kind of person that anyone just walks up to and talks to. If I have grumpy face, they try to cheer me up and for the love of Goddess, let me be a grump in peace! So, I smile. Because it’s easier. I do think that by smiling, it tricks the rest of my body into feeling better. And when you smile at other people, they smile back, which also makes me feel better. So really it’s selfish. My smiling is selfish.

“Cancer is the best thing that ever happened to me.” I don’t know why people say this. I already knew life was amazing. I don’t think I needed to stop and get cancer to realize what a gift this life was. Also, I don’t know anyone with cancer or a chronic illness that says this. “Cancer (or other illness) is the best thing that ever happened to me,” is maybe something said by people who had a brush with cancer and then went on their merry way. I don’t know. Cancer is the worst thing that ever happened to me. It fucking sucks and anyone who says it doesn’t can shut their stupid face. Even if/when I have No Evidence of Disease (NED), I’ll be like, “For fucks’ sake! Thank God that’s behind me.” I will not be grateful for the experience. Just grateful that it’s over.

Last week, when I was in speaking with my Nurse Practitioner prior to my chemo infusion, I complained about side effects, as usual (the acne the pops up on Fridays, weak muscles, sore joints and fatigue) and how much I hate chemo. My NP and my mother (whom I love very much and of course, value her opinion greatly- Hi mom, love ya!) were like, “You should see chemo as an ally. It’s a great tool. Aren’t we lucky that we have chemo?” (said in a high pitched mocking voice). One giant eye roll later and I was like, “You’re right. Yay for chemo!!” NOT. I’m sorry, I just can’t. I mean cognitively, I can get on board with these arguments, but my feelings are like fuck- I just want to be able to stay awake for an entire day without a nap. I just want to be able to taste all the flavors of my food. I just don’t want to have to rinse my mouth out with salt water after every meal. I want to be able to clean my fucking kitchen without feeling like a ran a half marathon. You know?

I just want to be normal. And not the, “New normal” that everyone thinks is a nice thing to say.

A Note About Lemonade 4

The support I receive continues to be amazing. I am so grateful for our meal train and the sweet little drop offs from my kind, thoughtful, and generous friends. I love the impromptu playdates with my kids and the little extra love shown for my husband by his friends. But if I could cook all of my own meals and do my own house projects and grocery shopping (I fucking love grocery shopping, no joke), I would. If I could create a workout schedule that didn’t center around chemotherapy and how much energy I’ll have, that would make me happy. If I could show up 100% for my kids every day; If I could wake up before Jim to make him coffee, even if just for one day… I would do it.

The fact is, I can’t do what you can because I don’t have the energy and the stamina and it pisses me off. I feel jealous. My husband and I split household tasks by what I’ll have the energy for, leaving him the majority of the, “Heavy lifting.” Some days, coming to the table to eat dinner as a family is the only energy I have. I feel lucky that reading to my children in bed is something I feel up to almost every day, except when I ask Zoey to read to me, because my eyes won’t stay open. I wish I could have made it so Jim had to do no work during his birthday weekend, but I couldn’t. The poor guy had to do dishes on his birthday because I could only muster up the energy to cook him dinner and that was after a nap.

This past week the doctors cut my chemotherapy dose in half because my blood counts weren’t up to snuff. This is the first time this has ever happened to me in my course of treatments. Naturally, it bummed me out and made me question why this had happened. Did I overdo it? Were my treatments too close together? Is my body failing me yet again? Will the chemo still do it’s job even though I’m not getting enough? Is this just no big deal? For me, this is another lemon in the day-to-day life of a cancer patient. What I choose to make of this situation is just that: my choice.

Life has handed me some lemons, that’s for sure. This cancer is sour and bitter, and there is nothing good about it. But my personality and determination won’t let me dwell on the anguish. Lemonade is the my beverage of choice. I hope to have a long life of lemonade-making in my future and I welcome anyone who wants to join me. Life can be so sour.

We all deserve a little sweetness.