Call Me Crazy (You’d Be Right) #MyLeftBoob #BreastCancer Chronicles

“Everyone’s a little crazy. Some people just hide it better than others.” ~Michelle Hodkin, The Retribution of Mara Dyer

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Pre-cancer pic circa 2015, “Queen Bad@$$”

To anyone I have met post-cancer-battle, on the outside I may “look” somewhat normal to you— a short-haired, sassy redhead with a biting wit, confident personality and many logs on the fire. But don’t let the tough-as-nails exterior fool you for what hides beneath the soft-as-marshmallow-fluff interior. I am a big mush and today that schmatlz came seeping out in a way I did not expect at the doctor’s office.

To look at me now, without knowing what I went through, you might think I was “normal.” But the short hair is a side effect of red devil chemo and neither is the extra baggage I carry in the form of chemo weight, chemo/fog brain, PTSD, pain and anxiety. These all contribute to self-confidence issues I never used to experience and, like many cancer survivors and patients, am having a hard time dealing.

You might be reading this and think— how shallow, how petty, you survived cancer, you should be glad to be alive, many are not that lucky, and you’re worried about your looks? And to you I say- BUH BYE, stop reading now, you just won’t get it.

Unless you have walked a few steps in my shoes, not even a full mile, you have absolutely NO idea what a cancer patient experiences. To be told you have a life threatening illness is hard enough but add to it that it’s rare, aggressive, only found in 1% of women, has a very high rate of recurrence, then heap on the fact that people you think will be there for you (like your family) are not and are too busy with their own lives to take you to chemo, that people want to make your journey all about them when it should be all about you…… Add in a heaping helping of “you should….” eat almonds, eat kale, do juicing, drink wheat grass extract, take oatmeal baths, smoke weed, just rub coconut oil on it….. Sprinkle in the stress and annoyance of daily requests from “well-meaning” individuals (and not-so-perfect strangers) who want you to not only buy their skin care line, weight loss wraps, hair regrowth serum, essential oils and health and wellness products but also sell them, and you have a recipe for full-blown psycho. So yes, as you can see, the stress was getting to me.

Of course I am blessed, grateful, happy and fortunate to be alive. Sadly, I have lost friends who did not get that chance. But this blog has always been about what I personally have gone through before, during and now after the C-word; my journey, and how I get through it with prayer, meditation, writing and other positive and productive methods. And guess what? I get messages from strangers-turned-friends from all over thanking me for being so real, honest and raw, when others are afraid of what people will think.

Before I was diagnosed and went through a 2-year-long harrowing battle to kill the evil demon,  we could blame the craziness on being an artist, or being the youngest of six black sheep and starved for attention. But now? Maybe it’s my age, maybe it’s my hormones, or being with the same wonderful person (“Mr. X,” who I am not allowed to write about or post photos of)  for 25+ years who is blinded by love and doesn’t feel the need to tell me I’m beautiful as often as I’d like (because again, he is blinded by love), but it all came out today in a big wet mess of black runny mascara on the fresh white paper of the doctor’s table. How embarrassing.

My amazing chiropractor is not even 40. He is single. He is not used to these crazy antics like so many men his age deal with on a daily basis and did not know what he was in for. Poor him.

As the massage therapist’s grip released the stress of the week that had built up in my neck and shoulders, I felt the tears coming that have been building up from frustration of weight not coming off as fast as I’d like….. aggravation of having to work so many jobs to pay the cancer doctor bills…. disgust of being called a racist for respectfully disagreeing with someone’s political viewpoints… and the list goes on and on.

I stayed composed until part two of my pain management therapy— spine/neck adjustment and acupuncture. I tried to hold back the tears but sometimes there is no stopping the flow after a hole is made in the dam. The pressure was just too much. As the doctor’s needle pricked my lower back, the physical pain of the action turned to mental. I tried not to cry but could not help myself. My doctor probably thought I was insane. But being the sweet, experienced professional that he is, he took it in stride, offered me tissues and apologized for the pain I was going through…. like it was his fault. Good man. Of course it was not his fault.

When I got to the car the full-blown sobs came and I finally felt the release that I so desperately needed. People, myself included, don’t realize how emotional it is to deal with the day-to-day business of life after cancer until something like this happens. Then I think— I need therapy, why am I not going to therapy, oh yeah, because I have no time, because I work too much, because I have to pay the cancer docs, and the circle goes round and round.

The good news is that I know this season will not least forever. And I hope that by writing about it I can help someone else feel less alone. I stopped frequenting online cancer support groups because I felt it was doing more harm than good. It became more of a “One Upper” club of sorts and less “supportive” with women saying things like— oh you’re so lucky, you only had Stage One cancer, you’re so lucky, you didn’t have to get a mastectomy. Yes, both true. But I don’t consider myself “so lucky” to have to endure red devil chemo which is so toxic the nurse brings it to you in a hazmat suit, to get my skin painfully burned 30 times during radiation, to go through numerous surgeries and complications. I DO however consider myself incredibly blessed.

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Surgery scar after chemo port was placed in my chest and tube was inserted into my jugular vein for treatment.

I am blessed to have stared death in the face and survived, to have been brought to the edge of death and back again 8 times during dose dense chemo, to have been given a second chance at life. For that I am eternally grateful and try to live my life helping others, volunteering to help children and my community and to treat others the way I want to be treated— The Golden Rule. Am I perfect? Far from it. But my intentions are good and I try my best.

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This is by far the worst of the worst days of my entire treatment.  It was right after lumpectomy #2 when I had many complications including a skin infection and an allergic reaction to the iodine during the surgery. I do not even recognize this person but it was me. I do remember how grateful I was to have woken up and to have been given the chance to live. It’s hard to put into words the profoundness of that feeling. 

So what will I do now with this life I’ve been given? I will try my best to help others by writing and raising awareness for early detection. I will continue to raise funds for Ann’s Place for Cancer as I have done the last two years. I will continue to raise up strong, confident leaders through my jobs at the church and teaching musical theater. I will love my family and appreciate those who take time out of their busy day to spend time with me. And I will try to act less crazy by making the most of every day.

I will make time for me— my health, my family, my goals and dream of someday being a published writer. I know it will happen because, like Jeffrey Tambor said in his new memoir, I have that “fire in my belly.”

I just started reading his new book Are You Anybody? in which he describes his desire to become a famous actor as a “fire in his belly” that would not quit since he was a young child. I have that fire too— I just never knew what it was I wanted, or was meant to do. Now I know.

In the book he says that everyone wants to be like Cinderella— invited to the ball, the life of the party, the most beautiful girl in the room. We all just want to be loved. I am so grateful to be in a new town of fresh, new faces and people who actually appreciate all that I do and tell me so!

Last night I met with two women who want me to help out their youth organization. When I asked if they had any more questions one said, “Yes, where have you been all my life?” After living in a small-town full of bullies for 12 years that constantly gossiped, lied and tried to destroy my business when I was only trying to create something beautiful for children and teens, it is so refreshing to be valued and appreciated for my experience and the good that I do.

Today I had an awesome meeting of the minds and got a chance to share about all that I did to help victims of the Sandy Hook tragedy after 12/14 by opening up The Sandy Hook Arts Center for Kids (SHACK). Then I remembered how I wrote an interactive live drama by teens, for teens that dealt with issues they face in a real way and many other things that have been a distant memory since cancer has consumed the last two-and-a-half years of my lfe. NO MORE.

Reminding myself that I have done way more positive than bad is a good thing. It’s not bragging. It should be inspiring to be kind, do good and pay it forward.

People have a tendency to compare themselves to others and that’s when we will end up feeling disappointed. There will always be someone smarter, funnier, better looking and wealthier than you. That’s not what life is all about because we will all grow old, get wrinkles and know that you can’t take it with you.

If this blog post has touched you in any way, I challenge you to show some love to someone this week.  It could be picking up the phone and calling your parent, brother or sister just to let them know you were thinking of them. It could be complimenting a stranger or paying for their coffee. But do something to show kindness. Why not start today? You could start a chain reaction.

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Another Day #1 Has Begun: #MyLeftBoob Chronicles – #LifeAfterCancer

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Last oncologist follow-up visit, always a nerve wracking time, but I did get the “all clear!”

It’s been a LONG time since I had a fitness post on this blog and I’m so happy to finally be back! For those just joining me, I’m a married mom of three and a fairly recent survivor of an extremely rare, very aggressive type of breast cancer that only occurs in 1% of women called Metaplastic Carcinoma (MpBC). It has a high recurrence rate and not much is known about because it was only just discovered in 2000, which is pretty scary.

I’m also Triple Negative (TNBC) which only occurs in 15% of women diagosed, including Joan Lunden, compared to 80% of the “normal” kinds of cancer. This means I don’t have the hormone receptors to be on any follow-up meds like Tamoxifen. Also scary. I describe life after my type of cancer like walking on a high wire in high heels without a net. Read my story from the beginning by clicking here.

Over the last two years, I endured five surgeries, 30 rounds of radiation, and tons of painful and emotional side effects. According to Living Beyond Breast Cancer, some of the short-term side effects of ACT chemo are:

I experienced 99% of these symptoms, the worst being hair loss, bone and joint pain and mouth sores. The long-term side effects are what I still deal with day in and day out two years later. Cancer.net describes these as:

So after dealing with all of this over the last couple of years, you might understand why it has been incredibly difficult for me to get up and get out to the gym.

Monday was a big milestone in my post-cancer life as I began yet another Day #1 of my never-ending quest to get fit. It was an emotional day as it also marked the 2-year anniversary (July 17, 2015) of finishing my arduous battle through the hell of red devil chemo.

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Last day of chemo: July 17, 2015

Doctors said the side effects of chemo could last up to 2 years or more but I naively thought I’d pop right back into shape, not get chemo brain (forgetfulness/fog brain) and have my energy back in no time. I thought wrong.

There were so many times I truly believed I was going to go to the gym and paid for a gym membership for an entire year without using it once. I even signed up for spin classes, but my body had other plans— mainly taking its own sweet time to recover and regain my strength after the harsh drugs pumped into my body, killing the good cells along with the bad. Dealing with a new lump and two painful biopsies last month didn’t help matters either.

So I almost could not believe that I was finally walking into the gym Monday morning to begin what I’d planned on starting many times since completing treatment. I joined, and paid for a membership, to the Rec Center over a year ago but never had the time or energy to go. But on Monday, I was motivated and inspired because a Facebook group I recently joined, Hello Fitness!, connected me with a trainer who organized a FitBit Step challenge.

Being somewhat competitive as the youngest of six, this was just what I needed to motivate me as I tried to keep up with the other five women in my group. It helps so much to have accountability partners cheering me on and watching my group members reaching their step goals was just what I needed to get me to get up and get moving.

I know from past experience in starting a workout program that I need to start slow, especially with my ongoing joint pain, torn rotator cuff shoulder pain, surgery scarring on my chest and other chemo side effects. In addition to that, I’ve been dealing with neck and back pain. While I was tempted to beat the rest of my team mates, I knew that if I reached 10,000 steps, that would be good enough for me.

So Monday I set out to reach my 10,000 step goal and was so pleasantly surprised when I already had 7,000 steps before noon! While doing a half hour on the treadmill and a half hour on the elliptical might not be a big deal for some people, for me it was HUGE. And that’s why halfway though my workout I had to choke back tears as I realized that I was finally doing this without feeling nauseous, tired or dizzy.

And little by little, as I set attainable goals I can reach, I get a little bit stronger.  I’m finally breaking free of the old, tired, pain-infested body and embracing the newer, stronger me, thanks in part to my new chiropractor, Dr. Nick Peterson of Peterson Chiropractic & Acupuncture.

The beginning of this Day #1 journey actually started several weeks go when I was searching for a new doctor to get back x-rays. Metaplastic Carcinoma has a tendency to recur in the back, bones, skin and/or lungs so naturally the fear crept in when I began experiencing back pain which made me fearful of that dreaded R word— recurrence.  “Metaplastic” means “change in form” which means this type is known to come back and spread to the back, the skin, the bones, the lungs and more. Every new ache, pain, lump or bump forces us to think again about our the fear of recurrence.

I began to think about two women I knew who also had Metaplastic Carcinoma and whose cancer came back to their spine. Both, sadly, passed away but they each fought their battles with dignity, positivity, grace and class.

So naturally when my back started aching in May, I couldn’t stop my mind from thinking about these two brave warriors who held my hand and inspired me since I was diagnosed in February of 2015.  I went for an x-ray at my new chiropractor’s office and it came back all clear. Thank God!

I’m so grateful to have found Dr. Nick Peterson, who got me started on a wellness plan that includes toning, stretching and strengthening. He has been working to rehabilitate me and got me to start moving and stretching several weeks ago which made Monday’s Day #1 at the gym a lot less painful.

While other chiropractors basically gave up on me and said the only way I would get relief from the neck pain (whiplash) and lower back pain was to have surgery, Dr. Nick is working with me by using a combination of massage, electromagnetic stimulation, traction, manual adjustments and acupuncture. Already in just one month I am seeing a difference in mobility and a decrease in pain levels.

I  know that if I continue on this path of a combined wellness, healthy diet and regular exercise plan, that I can finally reach my goals, gain more energy and stamina and weight loss will be a pleasant side effect. So what’s different now than all of my previous failed Day #1 attempts? Why do I think this is the time I really will stick with it? Three things:

  1. I started gearing myself up for it 3 weeks ago thanks to the new stretching and strengthening my core exercises I’ve been doing at the recommendation of Dr. Nick
  2. I have a workout buddy— my wonderful 17-year-old daughter
  3. I have an online community of cheerleaders in the Hello Fitness! group and I’m participating in a 5-day fitness step challenge

I’ve been drinking a lot more water and eating a low carb diet similar to Keto or as us old(er) folks call it, The Atkins Diet. This means so sugar, no pasta, bread, fruit or carbs. Your body goes into ketosis after the first 3 days which are BROOOOO-TUULLLLL as you go through withdrawals. You may get headaches, mood swings and cravings but just push through and after day #3 you will see the pounds melting off which will be motivation not to go back to the old way of eating.

What I learned most this week about myself is that I need to stop comparing myself, or try to keep up with other people. They have not been through what I’ve been through. Some have had it worse, some much easier and others have absolutely no idea how hard (and painful) it is sometimes just to get up and get dressed, nevermind get to the gym.

Some of the scars after my cancer battle are easy to see on the outside— like the eyebrow, eyelash and hair loss and extra weight I gained during 4 months of red devil chemo……

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Cape Cod, the day after the last day of chemo, July 2015

……or my fried skin from 30 radiation zaps over the course of 6 weeks……

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Radiation marks

…….or the pink, raised bump on my chest where my chemo port used to be.

Other scars are not so easy to see and they’re on the inside, buried under the layers of 40 extra pounds I’ve packed on that are being more stubborn than an Irishman at last call. All of these factors can take a toll on my emotions. But thankfully I am surrounded by some awesome people who love and support me no matter what.

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Cape Cod, July 2016

And now I’m counting down the days (20), looking forward to making more memories and taking more fun family photos next month on our annual trip to Cape Cod!

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Cape Cod, Summer 2013

Unfortunately (or fortunately) I will not be posting any bikini pix just yet, but I will feel good and energized since starting this wellness program. So for now I just keep on trucking and try to remember that each day is a new day to start again. And remember what matters is not how I look compared to others, but how feel I feel compared to myself at this time last year one year post chemo or the year before one day or one week post chemo. It’s been a long, hard road ut I am getting there little by little. As long as I keep moving forward.

 

 

While I would love to go to the gym every single day, lift tons of weights, do aerial yoga, hot yoga, laughing yoga, water mat yoga and headstands on the beach, the reality is that I need to do what I personally can handle, take baby steps and set goals I can reach.

Last week my goal was 10K steps a day for 5 days and 3 times going to the gym. So how did I do? I did 9K a day for 5 days and made it to the gym 3 times! That is a huge accomplishment for me. No, it’s not even close to my team-mate who had 80K steps in 5 days, but for me? It’s awesome! I’m comparing myself with myself.

The week before last I had 40,791 steps for the week. Last week I had 56,704. I increased my activity by 15,913 more steps, or 2,273 more steps a day. Here are my other accomplishments:

  • Week of July 9-15 = 27 floors, 16.99 miles
  • Week of July 16-22 = 116 floors, 23.62 miles

I’m not running any marathons yet but I am feeling more energized, eating healthier and feeling much better about myself— as long as I remember that the only person I need to try to be better than is who I was yesterday.

For anyone reading this who is in the same, or a similar boat as me, I will say this: don’t compare your behind the scenes with someone else’s highlight reel. While filters, smoke and mirrors may make them look like Greek goddesses living the best, most fun and perfect life, the real you, scarred, imperfect, raw and honest is beautiful inside and out.

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From BecomingMinimalist.com:

“Comparing our lives with others is foolish. But finding inspiration and learning from others is entirely wise. Work hard to learn the difference……We ought to strive to be the best possible versions of ourselves….. Work hard to take care of yourself physically, emotionally, and spiritually. Commit to growing a little bit each day. And learn to celebrate the little advancements you are making without comparing them to others.”

~Joshua Becker

Life is Like a Boxing Match, Not a Box of Chocolates: #MyLeftBoob #BreastCancerChronicles

I found this blog post saved in my drafts folder that I wrote back in early March and wonder why I never posted it? Perhaps it was because the king of the chaotic castle I was leaving was threatening my piddly grass shack in the woods and I was afraid. This king thought he was important just because he was somewhat wealthy and surrounded himself with status symbols to make the peasants who worked for him submit to his authority. But what he didn’t realize was that there is only so long a ruler can oppress “his people” before there is mutiny. This king was egomaniac who hated any woman who was not young, beautiful, blond and skinny. The longer was held captive the more I realized I could only remain a victim as long as I stayed. So I left.

 

After the last few months of complete stress and chaos, working way too much and being stuck in an unhealthy relationship (no, not my marriage), I’ve broken out of the chains that once bound me and I am finally FREE! A few people I’ve crossed paths with lately have made snarly comments about how many jobs I’ve had, like it’s a bad thing. It’s not by my choice. If it was my choice I’d still be working from home as I did for 7 years in order to be there for my kids. But unfortunately layoffs happen, life happens and you do what you have to do to survive.

Sorry Forrest, but life is not at all like a box of chocolates. A box of chocolates comes in a shiny gold box, freshly sealed in plastic, wrapped in a silky red ribbon. When you open that up your suspense heightens because there is a glossy bi-fold paper filled with delicious, delectable photos of every decadent chocolate treat just millimeters away from your anxious fingers. Beyond that lays a squishy piece of black cardboard separating your watering mouth from dark chocolate truffles with raspberry, caramel and milk chocolate centers. Maybe that’s life for millionaires.

For us working class blue-collar folks, life is more like a boxing match. It’s brutal and the pain seems never-ending at times. It takes a sucker punch at you, catches you off guard, smashes you in the head a bunch of times and then knocks you bloody and bruised, down the ground. While you’re laying there staring at the tooth you just spit out on the dirty ground next to your swollen cheek, you think you’ve been beaten so much that you might not have the strength to get back up again but then you hear your coaches, your friends—

“Hang in there. Life sucks, people suck. I wish I could help. I’m here for you. Don’t stoop to their level. You’re better than that. Don’t listen. Karma will get them. Just keep moving forward.”

And so you get back up.

Life is like a box you left in your garage that you’ve packed and moved along with you during each of your 20 relocations in the last 12 years. That box may look a little crusty on the outside, but you can’t throw it out. Inside sits a tiny white cotton sweater that a neighbor hand-knit for your adorable baby girl to wear home from the hospital before that same sweet neighbor passed away. It may be tattered and torn but just beyond the dingy brown packing tape sits a story your middle son wrote in second grade in crayon, complete with stick figures, about why he loves his mom. And then there’s the guest book to your oldest son’s graduation reminding you that your babies are not babies any longer. Time is fleeting.

I know that I am not going to waste any time working for, or surrounding myself around, people who suck all the life and love out of me. There will always be another job, another boss, another battle to fight— win or lose. I stared death in the face many times during my 2-year cancer battle I know that life is way too short to waste time on people who make you feel anything less than what and who I am— a strong, talented, loving, caring, giving human being who tries to do what’s good and strives to treat others the way I want to be treated.
Life is full of changing seasons— seasons of drought and seasons of turmoil,sickness, seasons of sadness, loss and famine, seasons of health and maybe some temporary wealth, seasons of tragedy and grief, followed by overwhelming laughter, joy and amazing love.  That’s life and, win or lose, I’m so glad to be blessed with another day. And now for some chocolate.
Photos by Rob Howard and Recetas Pasteles via Flickr Creative Commons

#MyLeftBoob Breast Cancer Chronicles 2017: Out with the Old, In with the Boobs!

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Boobs— we know them, we love them and some of us, such as myself, can act like one from time to time. For anyone who has known me pre #MyLeftBoob cancer diagnosis, you might say I can be a bit coo-coo. I love hard, play hard, feel deep and pursue dreams and aspirations passionately. I am persistent and tenacious and (mostly) don’t give a crap what people think (unless I really care about you).

And for those who met me post evil “C” word, you might be thinking what a completely insane loony I am….. and you’d be right. In addition to recovering from the biggest, baddest type of “red devil” chemo, 30 treatments of radiation and five surgeries over the course of 18 months, having constant aches and pains in my joints, still struggling with exhaustion and roller coaster emotions, cancer patients can suffer from PTSD- Post Traumatic Stress Disorder.

Pile on financial burdens, getting let go of a job you loved and worked hard at for nearly seven years, family and relationship issues with people close and I might have a teeny bit of a good reason to act like a boob. Heap on a few thick layers of insecurity from not having your once-fit body, hair, or eyebrows back, and you’d have the perfect recipe for one big, humongous hot mess. That’s me.

The holidays can be particularly emotional. People we call “family” don’t call anymore and it seems like they don’t care if you’re alive or dead. Those who were once so helpful and present while I was sick, bald and weak are now suddenly “forgetting” to invite us for Thanksgiving or are having Christmas with their “own family.”

Getting upset about this can lead depression, anger and a “valid excuse” to over drink and/or over medicate. And so the vicious cycle continues and repeats.

According to Cancer.net, it’s normal for cancer survivor to experience feelings of anxiety, worry, fear and dread.Cancer survivors who have PTSD risk developing depression, alcohol and/or drug abuse, eating disorders and loss of relationships and employment.  Symptoms of PTSD include:

  • Nightmares and flashbacks
  • Avoiding places, events, people, or things that bring back bad memories
  • Trouble sleeping or concentrating
  • Self-destructive behavior, such as drug or alcohol abuse
  • Frightening or unwanted thoughts

So how do cancer survivors deal with this anxiety, stress and fear on a regular basis? If we listen to our doctors, we pump ourselves full of Zoloft, Xanax and other anti-anxiety meds and antidepressants. Unfortunately these don’t mix well with alcohol and can make a person do and say crazy things….and then not remember them after….and then have to live through the next few days, weeks or months with embarrassment, humiliation and shame.

I said all that to say this— I’m sorry to anyone I hurt, annoyed or pissed off this past year. I’ve been struggling with a lot with my health, finances and relationships. My goal for 2017 is to try to be a better person, be more giving, more loving and more forgiving and to leave the past in the past. Unless you live in a vacuum, or Amish Country, you’d have to agree that most everyone shares the same sentiment about 2016- it SUCKED.

Personally, in 2016, I lost a strong and inspiring woman from my cancer support group who passed away after battling breast cancer and then stomach cancer ten years later. I lost a full-time job that helped pay for the mountains of hospital bills from Sloan Kettering and Danbury Hospital. And I lost a few people that are not worth keeping in my life anymore.

Whether they realize it or not, I’ve decided that it shouldn’t take so much effort to try to keep people around that don’t want to be. Life is short. A cancer patient faces that reality as they’ve stared death in the face and continue to do so over and over again.

I need to remind myself to count my blessings and appreciate all the good things I do have in this life. In 2016 I celebrated being one year cancer free on Feb. 17th, we celebrated my daughter’s “Sweet 16,” my son’s Star Wars themed 21st birthday, got a new house, a new job, moved to a wonderful new town with a great new school for my girl and made some amazing new friends.

Also, I’m cancer free! But yet I still feel like I’m being stalked by that the dreaded “R” word– recurrence– that keeps waiting to rear its ugly head. During my dark dance with cancer, faith, optimism and a good sense of humor helped get me through so why does the depression keep creeping in?

Dana Farber’s website states that it’s important to focus on wellness to stay as healthy as possible:

“Don’t blame yourself for your cancer. Some people believe that they got cancer because of something they did or did not do. This is usually not true—and you should not dwell on feeling this way. Remember, cancer can happen to anyone. You don’t need to be upbeat all the time. Many people say they want to have the freedom to give in to their feelings sometimes.”

I believe in the healing power of the stories we tell each other help us cope and not feel so alone. It’s never too late to start over, follow your dreams and be who you want to be. Life is short. Do what you love. Try, fail, try again, and if you fail again at least you won’t live with a giant cloud of “what ifs” lingering over your head. And who knows? Maybe you’ll succeed?!

These are my resolutions for 2017— work less, write more, cry less, laugh more, stress less, relax more, sit less, run more and find my ohm. Oh, yeah…..and try my best to stop acting like such a boob!

PS: Stay tuned to my blog for details on my 2-year cancer-free party on Feb. 11th and round 472 of my ongoing battle of the bulge….and scale…and kale.

#MyLeftBoob #BreastCancer Chronicles: #Cancer 101— What to Expect When You’re Expecting the “C” Word

Hello! It’s been a while since I last updated this blog because life has been a  whirlwind— in a good way. I am now 100% CANCER FREE and on the road to recovery. Praise the Lord!

For those just joining me, I’m the mom of 3 awesome kids and an incredible rescue-turned-therapy puppy named Sadie. I’ve been married to the most amazing hubby a girl could ever ask for going on 22 years this August.

Just last week I celebrated one year post-chemo and I’m still waiting to feel “normal” again after fighting an 18-month long complicated, harsh battle with the evil “C’ word. Here’s what I looked like before “IT”……..

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In case you didn’t know, in January of 2015 life threw me a 99-mile-per hour curve ball and I was hit with “IT.” You know— the thing you never want to be hit with or told— “You have cancer.” I found the lump while dying my fiery red hair and from Day #1 I knew the diagnosis had to be about something much more than just me. So I began a #MyLeftBoob awareness campaign and began writing to remind people to do monthly self breast exams.

On Feb. 17, 2015 I had a lumpectomy to remove the tumor— Surgery #1. I thought I’d only have to do the one surgery and 6 weeks of radiation and be done with “IT” but after the biopsy my doctor said I had a “rare and aggressive type of cancer only 1% of women are diagnosed with called “Metaplastic Carcinoma.” And I’m also Triple Negative which only occurs in 15% of women. Both of these types have a higher recurrence rate than other cancers and require very aggressive treatment and careful follow-up.

Here’s what I looked like post-surgery #1 of 4 before I knew I had “the bad kind” of cancer……..

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There would be 3 more surgeries after this photo was taken, 16 weeks of dense dose ACT “red devil” chemo, 6 weeks, 30 treatments, of radiation, tons of complications and emergency room visits along with terrible side effects.

What I know now that I didn’t know then was that life will never return to “normal.” I can’t just wrap up my cancer, put it in a box on the top shelf of my closet, shut the door and forget about it. It is who I am and what makes me stronger, more grateful, more positive, more forgiving and less stressed about the little things that really don’t matter when looking at the big picture.

In the past few weeks I’ve had several people, some complete strangers, tell me they or someone they love have cancer and they don’t know what to do or how to stay positive. They came across my blog and asked for advice and “words of wisdom” to help get them through. I’m so glad I can help others and pay it forward for all the good I’ve been blessed with.

A woman who was recently diagnosed with endometrial cancer asked me— “How did you get into ‘Warrior Mode’ and stay strong throughout your fight?” The truth is, I wasn’t strong all the time. It’s because of an army of angels that I was able to keep moving forward. I tried to only write when I had something positive to share, but there were many times I wasn’t feeling so bright and shiny. There were some really low days and some nights I felt like I might not wake up after chemo kicked my butt HARD.

What Can You Expect When Expecting Treatment for the Evil “C” Word?

I can share what I went through but everyone’s cancer and everyone’s treatment is different. I heard someone say cancer is so common now it’s like getting a cold. If only it was that easy to deal with— pop a couple of Alka Seltzers, slug back some Nyquil and voila! You’re healed! Unfortunately it’s not quite that easy. Some warriors I met along the way will never be done with their treatment— those with Multiple Myeloma, those whose cancer is resistant to chemo, those who have to deal with it spreading and recurring…..for them it’s a  living hell every day.

What Can You Expect if Expecting the Red Devil?

They call it “red devil” chemo because it is actually bright red in color and feels like the devil has invaded your body. The stuff is so toxic the nurse who administers it comes all covered up in a hazmat suit, gloves and goggles. It takes (4) huge 6″ long, 1.2″ wide syringes to get the full dose and after the fact it literally turns your pee red. You can’t touch or hug anyone for 24 hours. Not fun.

What About Losing Your Hair?

It may sound vain but losing my hair was the hardest part. Since Bible times hair has been associated with strength (Sampson and Delilah) or beauty (Jezebel) and femininity. So losing it is a tough pill to swallow. It means everyone will now know you’re sick. They’ll look at your with pity.

There were some days I looked at myself in the mirror and didn’t recognize the bloated, frail, hairless person staring back at me. The worst was last August after I just completed 16 weeks of chemo and had to get another lumpectomy for another abnormal lump found in #MyLeftBoob. This was that day, two days before our 21st wedding anniversary………

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Weak….hairless….nauseous….bloated but still alive and trying to squeeze out a little smile. I know I’m not special and hundreds of thousands of people go through this battle every day. But I feel I can use my writing to help others and I feel that is what I’m meant to do.

So what is my “Cancer 101” advice and tips for the newly diagnosed patient?

1. Put Your Blinders On

My doctor told me this and I wished I listened. People will say the dumbest things in the beginning. You have to have tunnel vision and focus on your treatment and taking it one day, sometimes one hour at a time and get through.

2. Don’t Check “Dr. Google”

Another thing the great Dr. Cooper advised— but the reporter in me naturally wanted to gather as much information about my type of cancer since many at Danbury Hospital hadn’t even heard of Metaplastic Carcinoma, only just discovered in 2000. A lot of the information online is scary…… and old. Your doctor knows best. Listen. Get a second or third opinion if you have to— especially if it’s rare.

3. Let It Go In One Ear and Out the Other

Everyone and their mother will try to give you advice, figure out how and why you got it and try to blame something or someone. They might even ask you— Did you take birth control pills? Did you smoke? Did you dye your hair a lot?

They will tell you— smoke pot, eat almonds, take oatmeal baths, rub coconut oil on it, buy these magic pills and it will cure you. If all of that could cure cancer thousands wouldn’t be dying each year. A nutritionist may have studied nutrition for 20 years but have they studied cancer for 20 years? No. But your doctor has. Listen and trust your gut.

4. Surround Yourself With Positive People and Get Support

Make it a point to only be surrounded by positive people who will lift you up, make you laugh, make you feel loved and supported. I went to a faith-based cancer support group at Walnut Hill Community Church.  Words can’t describe how grateful I am for their love, prayers and support. I also went to Ann’s Place which provides free therapy for cancer patients and their families— another amazing place  I can’t thank enough.

5. Start Journaling

Research has shown that a cancer patient who begins journaling does better in their treatment because they are less stressed. MD Anderson says on their website: “Journaling is one way patients can care for themselves. Writing down your thoughts gives you an opportunity to work out your feelings and emotions, which may help you relax and find reasons to be happier and more hopeful about the future.”

5. Make Time for Yourself

Get a massage, go to the beach, shut off the phone and take time for yourself. People you haven’t heard from for years, or even decades, will crawl out of the woodwork wanting to take you to lunch or a movie. Now is a time to be selfish, do what makes you happy and helps you relax. Time is precious. Choose to spend it with those who love and support you “in sickness and in health.”

6. Distract Yourself by Focusing on Others (or a project- or both)

While undergoing chemo I organized a fundraiser for the American Cancer Society’s Relay for Life. It took a tremendous amount of time and energy to plan a 9-hour-long, 9-band concert, to coordinate schedules, round up volunteers and raffle prizes but in the end we raised $2,600 for the ACS. I also headed up a Relay for Life team as team captain for Wendy’s Warriors which was a great way to give back as my way of saying thank you for how many angels on earth helped me. Read about them here…

7. Cut the Negative Nellies & Ignore the Jealous Ones

People might actually get jealous of the attention, money and gifts you may receive. The ones who gave me a hard time over creating a GoFundMe page have never volunteered an hour in their life.

Not to toot my own horn, but I’ve been a volunteer for 15+ years and gladly do it to help those less fortunate, to be there for troubled teens or help my community heal in the aftermath of the tragedy in Sandy Hook by volunteering time and money to offer a free space to heal through the power of the arts. I was grateful to have faithful volunteers by my side that enabled us to provide a safe haven when it was needed most.

When I was learning gymnastics, my instructor used to tell me to do a somersault to look down, tuck my chin and roll and I look at fighting cancer the same way. Obstacles will cross your path in the form of people who “just want to help” and may not realize their version of “help” is actually hurting and stressing you out. People might get jealous and even tell you so and try to make you feel bad for asking for help. Just ignore them, tuck and roll.

 

8. Find Your Village and Let Them Help

It’s hard and embarrassing to ask for help. It takes a humble spirit to open your hands and ask, “Please?” And it takes a village, a small army, to nurse a cancer patient back to life after staring death in the face.  I’m so incredibly grateful that my village was ready, willing and able to support me each step of the way. I am blessed beyond words and only hope I can help half as much as I have been helped. I believe what goes around comes around. Do good for others and it will come back to you.

9. Get Info Warrior Mode

To get into “Warrior Mode” you will have to choose your weapons wisely—

  • Choose to fight obstacles with perseverance.
  • Choose to fight weakness with inner strength by feeding your spirit.
  • Choose to fight criticism with kindness.
  • Choose to fight fear with confessions of faith.
  • Choose to fight cancer with dignity, grace, thanksgiving and optimism.

I did and that’s how I got through, and continue to get through, the after effects of this horrific war.

I would not wish cancer on my worst enemy and would never dream of being jealous of someone who had to go through what I went through. I’ve been blessed beyond measure and am happy I’m still here to pay it forward and to be able to look at myself in the mirror and say, I am a warrior— thanks to all of you!

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I had the opportunity to share my journey at Bethel’s Relay for Life a few months ago and hear the amazing stories of warrior sisters just like me who fought, or continue to fight the good fight. This is a club none of us ever wanted to be in and that’s why I feel it’s my duty to advocate for early detection since I was given a second chance. By the grace of God,  I’m still here. Some are not as fortunate.

Thank you so very much to everyone who was there for me every step of the way.

What are the Next Steps for Me?

With this type of cancer we don’t use the word “remission” due to the high recurrence rate. I must be diligent with follow-up which is why I’m now going to a “Functional Medicine” doctor to get my diet on track.

Because I’m Triple Negative, I can’t be on Tamoxifen so I describe my life now as walking a tightrope in high heels over the Empire State Building. I can look down and be afraid of falling off and plunging to my death, or I can put one foot in front of the other, take one step ahead and keep moving forward. I choose the latter.

If you know someone going through this battle feel free to send them to my blog. You can read from the beginning here if you scroll all the way down…..

https://wendipoprock.wordpress.com/myleftboob-breast-cancer-awareness-campaign/

Or they can email me at wendyannmitvhell@live.com.  Be well!

 

#MyLeftBoob #BreastCancer Chronicles: Surgery #5, the Battle Continues

Surgery #5? Aren’t you DONE yet? Yes, I know that’s what you’re thinking. Imagine how I feel!

After a year of hell, I’m so ready to be done. Cancer is like war— a war on the body, mind and spirit and treatment doesn’t end the minute you’re done with chemo, surgery and radiation. For many like me, chronic pain, swelling, anxiety attacks and the fear of recurrence is something we have to learn to live with.

It’s been a few months since I’ve updated this blog sp here’s what’s been happening since I last updated on Feb.2:

February:

David Bowie and later Prince, the legends and the bookends of my musical youth, passed away. Because David Bowie died of cancer and was a huge influence on me, being a weird goth kid, I knew I had to do something to honor him. I reconnected with old friends and we created a Bowie tribute band called Diamond Dogs…..

Photos courtesy of Lisa Weir or Autumn Photography

I celebrated one year cancer-free with friends, family, the wonderful people in my cancer support group and generous musicians who donated their time and talent to play for the benefit. It was a wonderful night, a celebration of life. I’m not sure exactly how much we raised since some sent donations directly to Ann’s Place, but I believe it was over $1,700. Thank you to all the generous donors, volunteers, bands, musicians and business owners who gave raffles and to everyone who came out to support me and Ann’s Place.

March:

My husband and I attended the St. Patrick’s Day Ball and had a shamrockin’ good time! Last year at this time I had just finished surgery and was just about to start 16 intense weeks of ACT dose dense chemo. What a difference a year makes.

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April:

I wrote and directed an original play based on Irish folklore called “The Princess and the Pirates.” It was a benefit for the Greater Danbury Irish Cultural Foundation. The play was a success and we were able to raise funds for the foundation to help them fulfill their mission of keeping Irish culture alive in the community.

Last Week/Today:

I got a brain MRI and a shoulder MRI due to persistent headaches and shoulder pain. Of course any time a cancer survivor gets a new lump or pain we always think the same thought— “Oh no. What if it’s cancer?”

I got the results back today and am happy to say— Thank God it’s not cancer!

The brain MRI results said that the headaches were probably being caused by inflammation and my diet. The doctor said I need to eat an anti-inflammatory diet and change the position that I sit at the desk on the computer. But it’s not cancer. Good news!

The bad news is that the shoulder MRI results show I have a torn rotator cuff and will probably need surgery. Who knew you could actually injure yourself while dreaming? Apparently sleeping with my right arm over my head and chest for 9 months to protect the chemo port did a number on me and there are torn ligaments and a hole in my shoulder which is causing pain whenever I do basic things like get dressed, lift, scrub, work at my desk, etc.

Doc said I have a torn rotator cuff, tendonitis, bursitis….which is it doc? All three?  I tuned out when I heard the word “surgery.” I’m getting a second opinion just in case.

I’ve been going to an occupational therapist and a physical therapist 4x/week to help with the shoulder pain and lymphedema (swelling) in my left arm and hand.

My oncologist said early on that to prevent recurrence I need to do things to feed my body, soul/mind and spirit. I also need to keep stress levels down, avoid alcohol, animal fat and exercise for 30 minutes 5x/week.

Since the orthopedic doc said physical therapy won’t help the torn rotator cuff, at least now I’ll have my mornings back and can begin my 5-step plan to take control back of my body, soul and spirit!

Going Forward:

Step 1: Get my diet under control. I met with a doctor who believes the health/food connection to illness so that means listening to what my sister (who is a nutritionist) has been telling me all along. Check out her Core Nutrition website here and like Core on Facebook. Diets don’t work. It’s better to make small changes and think about what I’m putting into my body and why.

Plan this week:

  • Drink the required amount of water each day (take your weight, divide in half, that # is the amount of ounces of water per day you should drink)
  • Start each day with lukewarm lemon water and Celtic sea salt
  • Have a kale shake 3x a week

Step 2: Start walking and doing yoga. I got 2 walking buddies and a yoga buddy— now I just have to stick to the commitment, even when they can’t. All are working moms which can be crazy. I work full-time as well. Add a husband who works 2 jobs/nights to my mix (so I don’t have a lot of help driving the girl to activities), plus 2 part-time projects and way too many doctor appointments each week and I’m juuuuust about to go insane. I know the regular routine of walking and yoga will  help to “stop the insanity.”

Plan this week:

  • Walk for 30 minutes 3 days this week, increast to 4 next week, 5 the following week
  • Do yoga once this week, increase to 2 next week, 3 the following week

Step 3: Make time for church, spirituality, God. A nutritionist came to our cancer support group and shared a study about where the oldest living people in the world are and what they have in common. Of those 5 places it was noted that those who lived past 100 had a very strong spiritual life.

Plan this week:

  • Start each day with a daily devotion from the new book I received as a gift from a friend— Daily Peace, 365 Days of Renewal
  • Go to church on Sunday

Step 4: Make time for family. Self-explanatory and should be #1. Family is everything!

Step 5: Make time for FUN! I’ve been playing in my band again which is good for the soul. Music is a healer and scheduling time to do what I love will definitely help destress.

Now let’s see if I can stick to the 5 steps.

I’ll start blogging about my progress begining tomorrow. Cheer me on or give me  a virtual kick in the pants of you see me slacking.

 

 

 

 

 

 

 

#MyLeftBoob Is Almost One Year Cancer Free!

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It’s been a while since I’ve written an update and wanted to let you know I’m almost done with with this year-long fight! The final surgery to get the chemo “Power Port” removed is Feb. 2, 2016! Woo hoo!

In some ways it seems 2015 flew by and other times it seemed like it would never end. We started the year with a bang with a broken bed, oven and dryer in week 1, my middle son almost dying from a ruptured appendix and torn intestine in week 2 and 5 days in the hospital (thank God he is still here!), and then me finding “the lump” in week 3, the day he came off of bed rest from his surgery. It’s all in the rearview mirror now as we look forward to the future with optimism.

On Feb. 17, 2016 I’ll celebrate one year cancer-free with a big party in Bethel, CT on Friday, Feb. 26, 2016. If you’re reading this, you’re invited! It’s a benefit for The Scotty Fund and Ann’s Place, two organizations that helped our family tremendously over the last year.

There will be dinner, cocktails, live music and a David Bowie tribute band! (R.I.P., Starman). We’ll post a Facebook event once bands and details are finalized, but please save the date! For more info, email wendyannmitchell@live.com.

Some people recently emailed, confused and wondering what happened after the last update? I’m still here! I spent 2 Tuesdays in December in the E.R.

On Dec. 4 I was admitted after having bad pain in #MyLeftBoob. When I felt another lump, my doctor felt I should get it scanned. Thank God it was not cancer (again!) and was just another side effect from the last surgery in August.

It’s a seroma- a collection liquid that forms sometimes after surgery. I’ll have it checked at the end of January to make sure it dissipates on its own. If not they will have to drain it.

The second time was exactly one week later for throbbing back pain in the middle of my spine. Because of the high recurrence rate of Metaplastic Carcinoma, my oncologist felt I should go and get an x-ray to make sure it wasn’t something serious.

After a CT scan, x-rays, blood work, EKG, etc. it was determined that I have early onset arthritis due to chemo. After breathing yet another HUGE sigh of relief I asked what I can do to stop the arthritis and the doctor replied, “Stop getting old!” Very funny. I did get a chuckle but realized many of these side effects (joint pain, back pain, hot flashes, tiredness) are something I have to learn to live with.

Part of writing here is therapy, some is to raise awareness for early detection and mostly I write to educate the many newly diagnosed people with cancer, and their families and caregivers, so they’ll know what to expect.

Now that treatment is almost done, many times if I suddenly get a hot flash or feel tired/achy, people ask why. I say it’s from treatment. Almost always the response is, “But I thought you were done with treatment?” Yes, technically I’m done with chemo and radiation but the symptoms don’t magically stop the minute chemo and radiation is over.

My doctor said it could take 6 – 12 months for all the harsh ACT (Adriamycin, Cytoxin and Taxol) chemo drugs and side effects to leave my system. While I may look somewhat normal, most days I don’t feel normal due to joint pain, sleepless nights and anxiety.

Here’s some information to help you better understand the conditions I still suffer, as many cancer patients do when treatment has ended, due to the side effects from chemo:

Chemo Brain:

“Research has shown that chemo can impact the thinking functions of the brain for up to 10 years after treatment. Some of the brain’s activities
are affected are concentration, memory, comprehension, and reasoning.” (Cancer.org)

Body Changes:

“Hot flashes at night and can disrupt sleep. This can cause mood changes and make it hard for to make decisions. You may feel tired or have trouble getting to sleep, getting up early, or getting back to sleep after waking up in the middle of the night. You may experience memory problems, depression, mood swings, and irritability.” (Dana-Farber.org)

Emotional Side Effects & PTSD:

“Some people with cancer may develop an anxiety disorder called post-traumatic stress disorder (PTSD). Although PTSD is most often associated with traumatic events such as war, sexual and physical attacks, natural disasters, and serious accidents, the disorder can also affect people with cancer. For example, a recent study found nearly one in four women newly diagnosed with breast cancer experienced PTSD.”

Many cancer patients will experience the same side effects months, or even years, after treatment. It’s been 6 months since the end of chemo and 3 months since radiation ended. I know I’ll get back to my “new normal” soon (and hopefully the gym) but I’m learning to listen to my body and rest when I need to…. which last weekend was 14 hours one day!

I’m happy to embrace 2016 with optimism, excitement and hope for more good things to come…. and more opportunities to pay it forward– especially with the benefit dinner/dance/concert on Feb. 26.

Thank you for your support, prayers and love. May 2016 be filled with all good things for you and yours.

Peace,
Wendy 🙂

*Pictured: Me & my medical oncologist, Dr. Robert Cooper, at his retirement party in Nov. 2015.*

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