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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.

Introducing: The Cancer Card

YOU GUYS—I am so excited to FINALLY tell you my big news!

It all started when I was diagnosed with Stage IV Breast Cancer in September of 2015 and I was swiftly ushered into a new club. The Cancer Club. It is a terrible club to be in. People who are in the club are constantly under a microscope. Literally, every single time a biopsy is performed. Then lucky club members are infused with toxic chemicals and/or exposed to radiation waves and/or parts of their body are removed. The side effects of the medicine makes them sick and zaps their energy. Every aspect of their lives changes. Co-pays, adjunct treatments, and additional comforts needed for the treatment of cancer add up quickly and you find yourself financially stretched in ways you never expected.

The emotional and financial impact of cancer is tremendous!

I remember right before I lost my hair, I went hat shopping at Spellbound, a boutique in downtown Burlington. The store clerk recognized me, remarked that we had mutual friends and said that she followed my blog. I told her that I was buying hats because I was starting to lose my hair. Maybe the store was  having a ridiculous sale on hats or maybe this amazing human recognized that sometimes a girl just needs a break, but every hat I presented at that cash register, the clerk announced was 50% off. I bought 3 hats. I left Spellbound feeling supported and taken care of and the store clerk was able to help me and promote the store. I have told this story approximately one million times. Word travels fast!

Introducing Cancer Card

This is when The Cancer Card first occurred to me. While I was incredibly grateful that this kind salesperson offered me this substantial discount, I never would have bought those hats if I didn’t have stupid cancer. For that, I think I kind of deserve a discount! I want to look good, I want to feel good, and having easy and affordable access to things that will help me keep my spirits up seems important.

And I am not being selfish or materialistic. Doubt me? You try going outside in the summer sun with no hat. And while cancer has taken some things away from me, like my hair, it hasn’t taken away my desire to look my best. Furthermore, according to www.cancer.gov 39.6% of the US population will be diagnosed with cancer at some point in their lives. It’s safe to say we are all impacted by cancer, in some way or other. Don’t we all want to feel like we look our best when undergoing treatment? Don’t we all want to support cancer patients and survivors, and give them a small discount that allows them a bit of pampering? 

I don’t just want a discount for me. I think EVERYONE who has a cancer diagnosis should have these benefits and that’s why I have developed The Cancer Card.

That’s right, Maggie’s Bright Side is creating a Cancer Card. Anyone in Vermont who gets diagnosed with cancer can apply for this card. It’s an actual, physical Cancer Card. Once an individual applies, they are given the card for free. Applicants must reapply yearly. Once an applicant has the card, they can use it for discounts at local stores. For instance, HammerFit is offering one free month of a gym membership and $22.95 per month thereafter or 1 free group fitness class and member rates from there on. Blissful Healing Massage Practice is offering 10% off all massage treatments. Pure Barre in Burlington is offering 10% off all memberships (excluding the new client membership). Maybe you get 20% off organic vegetables at the local grocery store, maybe you get 30% off your pre-chemo haircut, maybe a discount on scarves and hats… All of the Cancer Card benefits would improve your health, wellbeing, and happiness while you struggle through cancer. Ecco, Crimson Poppy and of course, Spellbound are all crossing over to Maggie’s Bright Side. You guys-This is going to be HUGE!

Local businesses will have the opportunity to be a partner to The Bright Side Cancer Card. They will have the opportunity to improve the lives of people who have been knocked down by a cancer diagnosis. By participating in the program, businesses will be able to lift applicant’s spirits, make them feel good about themselves, and even improve their overall health! There are different sponsorship levels available to businesses, so your business can decide what sort of investment they want to make in Maggie’s Bright Side Cancer Card. Along with using your company’s advertising budget on print and electronic ads, you can offer a service or discount to someone in your community?

The cost of cancer is tremendous. 

Many people have health insurance, but not everyone is that lucky. Even when doctor’s appointments and some medications are covered, the basic cost of living often increases. The cost of food increases as people turn to healthier options. Medication, vitamins, and supplements cost money. Patients being treated for different cancers have to spend even MORE money to buy additional supplies to manage the side effects from treatment. Then you have to attend extra doctor’s appointments, go to yoga, keep up with exercise classes. Your skin changes, your hair changes, your body changes, and with those changes you need different skin care, hair cuts and supplies and clothing options. These are all things that AREN’T covered by insurance. Wouldn’t it be great if there was a little help with that? Meanwhile, you have had to decrease your hours at work or take unpaid time off. It all adds up and at the same time that your doctors are recommending that you decrease your stress, the bills keep coming. Maggie’s Bright Side Cancer Card can help alleviate some of that stress. It can help people afford cancer with the support of local business. It also allows local businesses to support their own friends and client base.Banner-Image1

Doesn’t this sound amazing? Now, the Cancer Card won’t be available until October of 2017, but you can pre-register for the card now. Meanwhile, I’ll be working on gathering as many businesses as possible to help support my card. My vision is big. I’m starting in Chittenden County and neighboring counties (Franklin, Washington and Addison), but eventually I’d like the card to be offered statewide. Then I’ll be invited on the Ellen Degeneres Show and then other states will obviously want to consult with me so that they can start the cancer card in their own state! It’s going to be huge. Don’t you want to be able to say you were there from the beginning? Become a sponsor! Spread the word! Announcements about special events and more details about the card to come! Meanwhile, peruse my new website created by Maggie’s Bright Side partner, Breezy Hill Marketing.

Breezy Hill Marketing

 

 

 

 

Something Right

When Jim and I told our kids that my cancer was growing again and I would have to do more chemotherapy, they took it quite well. Zoey, age 8, a chip off the ole’ block, said “and then you’ll get better?” Then she proceeded to highlight the things she thinks are positives: maybe we can go on vacation, will people bring us food, she’ll be the only girl with hair in the house! Emmet, age 5, laughed and said, “I can’t believe you’re gonna lose your hair again!” We must be doing something right, because life goes on and these kids are looking on the bright side.

They do, however, feel strongly and we see their worry, anger and sadness ooze out like play-do in their sweaty fists, but overall I think we are doing a fine job (along with the help of an amazing Child Life Specialist) helping them cope with the unknown and scary world of cancer.

The day after we broke the news, Zoey, while getting ready for school, informed me that I should tell her teacher (check) and the guidance counselor (check). During school, she confided in her closest friends. After school, she said she would like an appointment with Ali, the Child Life Specialist. Don’t mind if I pat myself on the back for a moment.

But wait. There’s more.

Zoey returned home after a day of rain and inside recess with this:

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Your kids are looking on the bright side too.

I get presents from my kids’ friends that they draw with 3D pens. They tell me they love my new hair and that it’s really cool. They tell me I look beautiful. They draw all of us pictures. They put on impromptu dance shows. They pick out special snacks they think we’d love. They ask for Maggie’s Bright Side stickers so that they can sport them on their snowboarding helmets.

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When I feel hopeless and defeated all I want to do is hang out with my kids. I thought it was simply because I love them, but maybe it’s also because they bring me hope. If I look at all the hateful, icky things that are happening in the world, I feel sad, broken, and worried and I get all doomsday and cynical, but if I look to our children, I can see that we are building the future and that the future is kind, loving, and compassionate.

Zoey just came up to my bedroom where I’m resting and asked if I needed anything. Now she’s getting me tea, a lemon for water and a banana smoothie. She is learning how to take care of people when they need it. We are getting through this, and finding the positives amongst all this garbage, you guys! Something right is going on when our kids are showing unsolicited kindness and compassion. When they help eachother out and raise money for sea turtles and recognize the inner beauty in one another.

My nephew, whom Emmet idolizes, sent him a letter that said he hoped his letter cheered him up (it did) and ended with “and remember, love cures all diseases.” Oh, how I hope this is true! It certainly addresses symptoms of disease. When I receive these nuggets of love, I definitely feel better and I think the kids feel better too.

Terminal illness is such a difficult concept for children to understand.

Kids know that cancer and death can go together and so it’s always a scary topic for adults and children alike. The parents of the children in my life are doing something right because their kids see me, understand my situation, and love me and my family so unwaveringly. It makes my heart swell!

If you don’t know what to say to your kids about people in your life who have cancer, there are tons of resources online. Mahana Magic is a terrific local organization that provides support to kids who have a parent or adult caregiver with cancer.

As kids brains grow, they process their experiences differently, so the conversations my husband and I  are having with Emmet and Zoey this time around are different than they were a year and a half ago. Emmet is asking if I’m going to die. Zoey feels compelled to be the caretaker. I feel guilty and helpless that they have to cope with this! I have no idea if I’m setting the right tone and providing the right level of information, but I must be getting something right, because when it comes down to it, my kids, and the kids in my community are my heart and my hope. They are the source of my bright side.

 

New Year. New Me.

{Disclaimer: I’m working with The Edge Sports and Fitness to bring you this information, but the opinions presented here are entirely my own!}

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New Year. New Me.

Yeah, I know it’s almost the end of February. It took me a while to recommit to my own health and fitness, you know? Plus, I want this to be a continuous commitment, not just a flash-in-the-pan “New Year’s resolution” that fades away after a month or two. So I really had to think about it. Okay, I’m not aiming for a totally new me. But I am seriously dying (no pun intended) to get my bod in shape and adjust to this post-chemo, post-ovaries, post-menopausal body and metabolism.

In the past year, I stopped chemotherapy and started new medications that offered fresh, new side effects. Muscle weakness and pain, joint pain, fatigue, hot flashes and weight gain are just a few of the gazillion side effects I could be experiencing at any moment. Just in the matter of typing a few of these sentences, I’ve gone from dressed with a sweater and scarf to wearing only a t-shirt.

Adjusting to a new body has invoked more feelings than I would like to admit. I have run the gamut of emotions. I feel sad about my thickening waistline and anxious about my sweaty hotness. My weakness makes me feel inadequate and lazy. Breathing offers a sense of peace, because I am, in fact, breathing however labored that breathing becomes.

On top of the wear and tear on my whole body, I’ve got this knee injury that has curtailed my ability to engage in my favorite source of cardio- anything dance fitness related, and I’ve had to become creative about finding a no-impact cardio exercise. And that’s where I have rediscovered swimming!!swim-lane-edge

Now, on top of everything, I am facing another round of chemo. I could very easily use this as an excuse to put off my self-improvement project. I know how chemo will impact my body, and I know that I need to be fit and strong to fight against this recurrence of cancer. Rather than slacking off, I need a strategy to strengthen my body, and help me release the stress of cancer treatment and maintenance. I have no plans to become a world class weightlifter or competitive athlete. I need endurance for a long term fight.

I’m really excited to announce that The Edge Sports and Fitness is partnering with Maggie’s Bright Side for the next three months to help me work toward my fitness goals! This all started when I began to use The Edge Physical Therapy to rehab my knee. Physical Therapist, Tori Lamphere DPT, put me to work, measuring my muscle strength and weaknesses. She helped me identify which muscles I need to strengthen in order to protect my knee and she developed some swimming drills for me so that I could improve my cardiovascular health, improve my stroke and not burn myself out.

I am not the same person as I was before my cancer diagnosis, and I mean this in more than one way.

Exercise classes can be costly, however, and when you are spending $200-$400 a month on co-pays, vitamins and other medical appointments, the cost of working out can really add up. I get that exercise is an investment in my overall health, but when I’m counting my pennies, paying for fitness never comes first because I can usually figure out some free fitness activities on my own. The thing is, nothing I can do gives me the sense of community or the option to try so many different types of exercise as I’ve found at The Edge. The Edge has childcare. Easy parking. Classes throughout the day. A pool. A gym… For the value, you can’t get a better deal on fitness- or a more convenient way to get in shape.

For me, for now, that’s swimming. Low impact, and a great cardio workout. I can feel good changes in my body, but my knee isn’t getting overworked.

What I love about The Edge is that my physical therapist and personal trainer can work together to offer me the most effective exercise program without exacerbating my injuries! I also love that there are a ton of group fitness classes that I can check out and build up to as my body allows! My day-to-day schedule changes so rapidly that it’s nice to know that no matter what life throws at me The Edge has classes that will fit into any schedule and tons of open swim time and the fitness room is always available! There are many different exercise options and I appreciate that!

Having a terminal illness means coming to terms with the fact that your abilities could change at any point in time. Chemo will certainly have an impact on my strength and endurance, and I will be instructed to stay active and keep moving. This can be discouraging, at the least, and expensive, at best. The Edge is making it possible for me to keep moving and keep my fitness level up, without breaking my budget.

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I’ll be taking you with me on my workouts! Maggie’s Bright Side will be by my side, pushing me and encouraging me, and if you want, you can be my workout buddy! I’ll post what I’m doing for workouts on my Maggie’s Bright Side Facebook page and if you want to come along, I’d love to have you! The Edge members, I’m excited to work out with you! Tell me when you are there and I’ll try to make it! And don’t forget to tag all of your workout pictures (at The Edge or otherwise) with #maggiesbrightside.

We’re going to stay strong together!

Dearest Amy Schumer

Dearest Amy Schumer,

I’m coming to Montreal to see you on Friday, February 17th and I wanted to tell you that I’m going to need you to make an exceptionally funny show for me and the thousands of people who will also be attending your show. I mean, I know that you are hysterical all the time, but like- FOR REALS– on Friday, I’m gonna need you to bring it. I know I’m being an annoyingly demanding fan, but let me tell you where I’m coming from, because I really need a good laugh.

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A year and a half ago, at the ripe young age of 35, I was diagnosed with Stage IV Breast Cancer. You may not know this, but there is no cure for Stage IV Breast Cancer. It suuuuuucks. Big time. Quick rundown of what I’ve been through thus far: I had chemo, then had my ovaries removed and now I’m on maintenance medication which comes in a trapper keeper type container and is labeled “cytotoxic material. It’s probably fine, Amy, don’t you think?

I was managing my terminal illness and doing my best to make a positive impact on the world around me, and then two weeks ago, I had an appointment with my good ole’ breast surgeon who I like to call “the Breast Guru.” I pointed out a few changes I had noticed in my breast, since I basically have been doing daily self breast exams for a year and a half. The Breast Guru was very worried that the changes in my breast indicated new tumor growth, so she sent me to get a mammogram. This was not too big of a deal for me. I’d had a mammogram in October of 2015, so I knew what to expect. I’m used to scanxiety, since I have CT Scans every 3- 4 months and I get my results immediately, so that was helpful. The Breast Guru thought that the alternative to new tumor growth was that I was experiencing symptoms of Lymphedema, which is swelling caused by lymphatic system blockage.

Well Amy, it wasn’t Lymphedema, but the Breast Guru thought maybe we should gather more information. After considering a breast MRI- which is an MRI where you lay face down on a table and let your breasts dangle below you for 45 minutes while listening to the soothing bangs, ticks and jackhammer sounds produced by the giant machine- the Breast Guru decided to bring my case to the TUMOR BOARD. This is a Board in which bunches of doctors you don’t know talk about you and your body, and don’t take notes, so you know you aren’t getting the full story (“cause no one else is in the room where it happens, the room where it happens, the room where it happens”) and then make decisions about your course of treatment. Cool.

The Tumor Board suggested, after looking at AAAALLLLL my imaging from the beginning until now, that there is definitely progression in the breast tumor, that a breast MRI would not provide additional details and that it would behoove me to obtain additional imaging of the rest of my body in order to ensure that there is not additional tumor growth elsewhere. Amy, I know what you are thinking: “It’s just a precaution.” Yeah. That’s what I was thinking. Except when the dark side shines through.

The dark side is motherfucking dark as hell. It’s grocery store parking lot rage and “I’m gonna cut you if you say the wrong thing” and of course, nothing will go right. It’s piled with “you’ll never move into that house you want and you don’t deserve to be happy and you don’t have time for that.” Sometimes the dark side makes me think that I should have gone with a different doctor and I must not care enough about staying alive if I can’t cut out sugar and what about Rick Simpson? And then I explode with tears and screams and maybe I even throw up a little and then I put myself back together because my kids will be home soon and I have to make them dinner.

I’m not saying that DID happen, I’m just saying it COULD.

The week leading up to seeing you in Montreal consists of the following:

First, a brain MRI. That’s right, brain. Because I think it makes sense to look at my entire body and make sure there is no cancer progression anywhere. Have you ever had a brain MRI? It’s what I imagine lying in a closed coffin would be like. Doctors ask me all these questions like if IEDs have ever exploded in my face, or if I have a pacemaker or piercings, or tattoos (this one I answemri-scanred yes to because like you, I rock the tramp stamp pretty fricken hard). I had already answered all of these question over the phone on Friday, but apparently those answers were not legitimate. Then, they made me take off all of my clothes and wear scrubs. I got to lay on a board with a cage on my head and a rearview mirror at eye level so I could peek out and be sure that nothing weird was going on outside the tomb I was in. Like, for instance, maybe the zombie apocalypse would start while I was trapped inside the MRI. I could not move, turn my head or scratch the itch on the back of my neck. They gave me earplugs and headphones, which they told me was for any Pandora station I wanted, except they are liars because the music kept cutting out and eventually I gave up asking for them to turn it back on and just focused on my deep breathing. This was the deepest breathing I have ever experienced. Of course, I forgot my anti-anxiety medication and the guy at the front desk said they didn’t have any medication there that they could give me. No medication at the hospital- that sounds legitimate.

After 45 minutes of listening to what seemed like a building being destroyed next to my head and not being able to protect myself when the bricks could have started falling on my face, I was free to go. And not to worry, those pictures of my brain will be processed and ready for review by my doctor in 3- 5 days. I should sleep fine. I got dressed and deposited the hospital scrubs in the bin labeled “soiled linens.” Soiled linens? It’s not like I shat all over them.

Next up will be a PET Scan. I will not be allowed to do vigorous exercise and was instructed to just “be a couch potato” the day before the scan. Now, some people might be excited about this but not me! During these anxious times, the only thing that keeps me sane and full of endorphins is a good workout. So telling me to couch potato it up is like saying, “I think it would be best if you sat in a ball and rocked back and forth for the next 24 hours!” Can I at least have some medication with that?

Then, I was instructed to not have any food or drink for 6 hours before my 2 hour 9:30 AM scan. Cool.  That should be fine. It’s probably best that my mom offered to go with me because she made it through my teen years. Did I mention the dark side? Oh I did. I basically live on coffee, particularly when I’m not sleeping. So this should go well. However, once that is over, I will be done with the testing. For now, and will only have to wait for my results for one day.

Here’s the thing, Amy, once I get those results, I’ll be hopping in my minivan to drive me and 5 of my friends timg_1695o Montreal to see you. Those results could say that they see no progression of the disease anywhere else in my body. This, in a manner of speaking would be good news because it would mean that my medication is still working, for the most part, and we just have to deal with the local progression- which could mean a quick mastectomy, maybe a little radiation. Or the results could be that the cancer is progressing in the rest of my body and a total change in treatment is warranted, in which case I have no idea what to expect.

What I do know is despite the completely warranted mental breakdown I am clearly having, my body feels good. The other thing I know is that laughter is quite literally, the best medicine. So Amy, for the fucking love of goddess, I’m ready to laugh my ass off, so PLEASE make it your best show ever.

See you on the bright side, 

Maggie Van Duyn (*pronounced dine, not dunn)

P.S. You may not be able to hear us or see us from the stage because we’ll be in the back. No, I mean like super far back. (Section 321-Row DD-Seats 1-6, to be exact)

P.P.S. If you want to keep up with the results of my scans, please follow me at maggiesbrightside.com

Not Normal

Vermont Gas Company came to inspect our furnace. The furnace looks great and is running well, but the gas guy noticed that we did not have a chimney liner. Like a normal home owner, I asked how much it would cost and he replied, “around $3,000.” Then I stopped acting like a normal home owner. I swore and was extremely sarcastic (weird, I know). I didn’t name call or anything, I don’t do that. I just made statements to make him feel bad like, “well at least when I die because I can’t pay for my breast cancer treatments for the next 3 months, I’ll be happy knowing my children didn’t die from carbon monoxide poisoning!” I am not normal. It was a smashing ottomans type of moment.

I lost my cool. Big time.

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Let me back up and tell you how I arrived at this moment.

First, Trump’s inauguration. I have tried really hard not to talk politics on this blog, but it just infiltrates everything I think about right now. The current political landscape is creating intense chaos and I find myself frantically signing petitions, joining in the resistance and grasping at straws to understand why anyone would support a man who is so openly racist and xenophobic. I just don’t get it. On a personal note, I feel worried about the repeal of the Affordable Care Act because if my husband, Jim, for whatever reason needed to find a new job, my cancer treatment would not be covered by his new insurance because it would be considered a pre-existing condition. How fucked is that, you guys? Let that sink in for a minute. This is not normal. My husband is tied to a job (that he thankfully loves) in order to get me cancer medication and treatment. Not to mention, I feel fairly confident that the price of my daily, required-to-live medications will increase, so I just pray that the pharmaceutical companies can show some sympathy.

Next, we are trying to sell our house because we have a contract on another, larger home around the corner. We will remain in our idyllic village and the owners of the house we are moving to are being extremely accommodating and kind. I feel like we were meant to live in that house. It’s easy to imagine my family, settling in and making memories. I can smell it. It’s nearly tangible. However, we have no buyers for our house. I really thought we would have no problem selling. I thought our house would fly off the market. We have had tons of interest, but no offers. Realtors tell me it’s a great property and listed at the right price. So what’s the problem?

This is discouraging.

I’m confused about why the new house feels like destiny and yet our old house stubbornly remains in our possession. I continually try to understand the meaning of this and search for what “life’s lesson” is being taught. I have spent the last year manifesting positivity and realizing that you can do anything you set your heart to and yet, here I sit, in my same old house, with no contract, and not nostalgically reminiscing on the joyful moments my family and I spent here. I am mad, and quite ready to GTFOH.

Additionally, real estate is the most passive aggressive profession on earth. I mean, how do you even know what agents mean when they say things like, “I’m not trying to get your listing, but I don’t know why your house hasn’t sold”? Or when they send you “free advice” about selling your For Sale by Owner property? That is not normal. I’m a truth-teller. I cannot exist here in this land of real estate doubletalk. For now, we have a safety plan where another amazing family from our community who is also searching for their forever home will rent our new house until we sell. #richmondvtisthebest

On top of this, I have this knee/hip/joint injury thing going on and I’m trying to fix that and get back into shape. I know, how cliche for the beginning of the year. It’s basic. It’s normal. Me and everyone else, right? But seriously, remember back when I had that erythema nodosum thing in my leg and my leg swelled up? I think I have some residual effects from that. One nurse practitioner said I have patellofemoral pain syndrome, which means, in a nutshell, that my knee hurts. Seriously? I paid for this diagnosis. Why did I even bother going to the doctor? It’s on the mend, but annoying and a reminder that my body has an expiration date.

And if that reminder wasn’t enough, I saw the breast guru this week. I have been feeling bothered by my left breast. It feels heavy and sometimes gets a little swollen. I knew I had an upcoming appointment with the breast guru, so I thought I would wait and see what she had to say. Here’s a lot of information about my breast (so skip this part if you don’t want to talk about my boobs): I have inverted nipples and now there is a huge dimple next to my inverted nipple.  I think the dimple had just been encased in the inverted nipple before and now it’s independent. But it’s weird and different and the breast guru thought so too.

Side note: when you are doing your monthly self breast examinations, be aware that there are multiple abnormalities that could be visible. My favorite guide is this lemon one. If you need reminders, I suggest you follow @feelitonthefirst on instagram.

lemon-breast-exam
Photo Credit: http://cdn.vogue.com.au/media/file_uploads/1/6/6/0/16609-1.png

This new breast development could be a few things. It could be what just what I think it is; a change in the tumor that does not signify progression of the disease. It could be additional fluid in my breast caused by the inability of my lymphatic system to drain based on the fact that I have multiple healed lymph nodes that created scar tissue and thus, blockage. The breast guru has made an appointment for me to see a doctor at the Breast Cancer Clinic at UVM Medical Center to assess if this is the case. If it is, she refers me to a physical therapist who specializes in lymph drainage. It also could be new growth on the tumor in my left breast, so I will be having another mammogram in the coming weeks to determine if there is new growth to be considering and then we’ll make plans from there.

With all of this going on, you can imagine how the off-handed remarks of an unsuspecting Vermont Gas Technician informing me that I would have to come up with an unexpected $3,000 in the next 30-60 days might tip the scales to the point of spiraling out of control. $3,000 may not seem like a big deal to some, but to a special educator and a part-time social worker trying to start a new business, move, and manage the costs of cancer, it’s a lot.

I mean, I handled it.

After quietly apologizing to the gas guy, I spent the next hour of my life sobbing uncontrollably in the shower until the hot water ran out. I cried for the refugees and for women and for the GLBTQ population and for people of color who are being terrorized by our own government. I cried for our children and their education and because my 5 year old thinks we need guns in school to protect us from fucking grizzly bears. Hot tears ran down my cheeks because I’m worried that the signs from the universe telling me not to buy this house are because we can’t afford it because I am sick and the cost of being sick is that you can’t have nice things. I wept because I might have to tell my children that things are bad again and I’m worried about the impact of that on their spirits.

The day I had my doctor’s appointment with the breast guru, I was unflappable. I’m fine, I told my mom. She knows how I work, so she didn’t push and she won’t be surprised to read this. I texted my friends and family. “I’m okay,” I said. It turns out I am not okay. They knew I would not be okay. I’m okay now. But I’m also not okay. Both. I’m both. About all of these things I’ve listed above. I’m okay and I’m not okay, because I’m normal and I’m not normal.

Normal people are not okay and not normal people are okay. Not normal people are not okay and normal people are okay. We all move in and out of normal and not normal multiple times in one day. “Normal” is all relative and these are trying times. It’s fine to be okay or not okay as long as we have compassion and understanding for one another and for ourself. The gas guy totally gave me a pass. He was okay. We all have different ways of handling chaos and uncertainty and sometimes we smash ottomans and yell at gas guys and cry in the shower. That’s fucking normal. And I’m okay too.