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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1 X-Ray, 2 Biopsies, 3 Awesome Results: #MyLeftBoob #BreastCancerChronicles

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Okay, that last post was super depressing but sometimes that’s life. This blog is honest, open and real and doesn’t sugar coast the roller coaster ride we are on. Some readers may think I’m being melodramatic but the majority of emails and comments I get are from followers who say how much my writing has helped them— people who are not as open about their cancer journey as I’ve been, women who are going crazy but are afraid to go to therapy, patients who, like me can’t understand why the ones they thought would be there for them are not. It’s all part of the journey and the wounds that thicken our skin in this life-long battle we’re in.

We may look normal from the outside now that we’re done with treatment, but our lives will never be the same. Every new ache, pain, lump or bump forces us to think again about our biggest fear— recurrence. What it the cancer is back? And this is what I’ve been dealing with for the last few months.

Back in April I began having really bad cramps. At my annual gynecology checkup I shared my symptoms with my doctor thinking he would say it was normal for women my age. He didn’t. He ordered an ultrasound because of the type of cancer I had and its high rate of recurrence.

Seeing as I had so many complications during my breast cancer treatment, I figured I couldn’t possibly have anything but normal results for this test. I thought wrong. He said the results were abnormal and that I’d need another test. Test number two- they found a lump. More waiting.

In the midst of all this waiting over the course of two months my back began to hurt. Immediately my mind raced and the thoughts came flooding back— what if it’s back, what if it’s in my back? I fought so hard for so long. I just can’t go through all of this all over again. Except for telling my husband, I kept the results to myself and tried to go on with life as usual. But the pain, lack of sleep and worry took a toll on my sanity.

I thought about two women I’ve met who also had Metaplastic Carcinoma, a very rare type of cancer that only occurs in one percent of women diagnosed. It’s a very aggressive type of “new” cancer that has a very high rate of 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.

One woman, a fellow journalist, was one of the first to reach out to me after I found her online support group. She was an amazing advocate for this unrelenting disease and launched metaplasticbc.com to connect patients, caregivers and researchers. She also created a YouTube channel detailing her treatment. She fought a three-year battle with dignity, grace and humor. But the cancer came back, to her back, and she passed away in November of 2015.

The other woman is still fighting. The cancer also came back to her back and, after surgery on her spine to remove the tumors, she is now paralyzed from the waist down and confined to a wheelchair. You’d think this would give her a reason to complain, be angry and bitter or all of the above. But not this fierce warrior. No, she fights 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 have held my hand and inspired me since I was diagnosed in February of 2015. I went for an x-ray and it came back all clear. Thank God!

But I still had to wait for test number three and two biopsies on my uterus and cervix. I won’t go into detail about the procedure, I’ll just say there were needles, catheters and painful scraping involved. The doc said the pain would be over before I knew it— not so much.  The cramping and pain from the biopsies lasted for hours and I had to take 4 Motrin to finally get some relief.

Finally after almost a week of waiting I got the good news— it’s not cancer. Thank GOD! The last three months have been awful, filled with so much worry and fear. Now that I know I remain cancer free I can try to get on with this thing called life.

While cancer has robbed me of so much it has given me so much more— appreciation for family, friends and of course my special sweet pup who never leaves my side, gratefulness for the doctors and nurses who have helped me get better, the helpers and the pray-ers, thankfulness that while I had it bad and some of the pain and symptoms will never go away, I still have all my parts, can still get up every day and be with my loved ones, go to work, exercise, smell the stargazers and enjoy all of the blessings I’m fortunate enough to have.

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And now that I have the all-clear, I can try to finally start getting back to taking care of my health. My goal for next week is going to the gym 3x and yoga 2x. If I don’t reach my goal please feel free to cyber-fish-slap me.

Black and white photo of Wendy by Garrett Burdick, San Fran., CA

Stargazer photo by Emily Lewis via Flickr Creative Commons

#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 Chronicles: #Chemo Day 74: Pain, Scars and Superstars

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I haven’t updated in a while because I was waiting to feel better….waiting to have something positive and inspiring to say…..waiting for the pain to go away and well, it hasn’t. The last few days have been rough. And I’m not a wuss. I popped out an 8 1/2 pound baby, my first-born, with NO drugs whatsoever. The nurses in the delivery room kept saying, “Wow! You have a really high pain tolerance.” Or, “You’re doing really well considering how hard and fast your contractions are coming.”

Fast forward 26 years to a new kind of pain caused by harsh chemo drugs to kill any last trace lingering, unwelcome cancer cell. Everyone kept telling me how much easier the Taxol would be- it’ s not. Everyone kept saying how I’d have less side effects with Taxol- I don’t. I have more. The pain was so bad in my knee last weekend that I could barely walk. The pain was so bad in my joints and back last night that no matter which position I turned, I was still in extreme pain. Plus I have tingling in my feet and toes.

The only thing positive I can say about all of this is that I’m almost done. I have two more treatments left, then another surgery, my third (fourth if you count a tooth extraction), and another scar. I’ve heard someone say before that scars are tattoos with cooler stories.

The new surgery will be at the end of July to get rid of another weird, rare, abnormal thing I’ve been diagnosed with- Atypical Ductal Hyperplasia (ADH). As if being diagnosed Triple Negative (15% of women get) and Metaplastic (1% of women get) was not enough. This new surgery will push back radiation by a few weeks, depending on how my scar heals, but at least it’s not cancer. Phew!

One thing I’ve learned about all of this over the last five months is that no two cancer treatments are alike because no two people are alike. So when people who have been through it make generalized statements about what to expect, I can truly say, speaking from experience, don’t listen. Expect the worst but hope for the best. That may sound negative but until you’ve been through dizziness, nausea, hair loss, extreme fatigue, muscle pain, joint pain, back pain, neuropathy all at once, on top of facing a life threatening illness, you have no idea what it’s like.

It’s physically, emotionally, mentally and spiritually draining. It will test your faith. It will test your inner and mental strength. It will test your relationships and maybe even end some and that’s okay. It will show you who truly loves and cares about you and that’s a good thing. It may be shocking at first to realize those you thought would be there are not. Maybe because they can’t deal with the C word. It’s too scary. Maybe because they offered you advice and you politely declined. Maybe because cancer is too depressing…or too inconvenient. So many times I’ve wanted to say to this one person who has not been there for me, “Sorry my cancer diagnosis has inconvenienced you,” but I won’t apologize for something I didn’t ask for and have no control over. This person has shown me time and time again that other things in their life are more important than me. And so I just slowly let the relationship fade away. Yes, that’s depressing.

Then I try to fill those sad places with thoughts about the tons of love and support I’ve received from so many and I am grateful. It’s an emotional roller coaster. Each day I never know what to expect and this has become my new normal.

So how have I been coping? Prayer. Support from family and friends. Relaxing yoga and therapy sessions at Ann’s Place- thank GOD for that place! I wish I had gone sooner but I was too busy trying to distract my mind from the fear that tries to creep in…from the what ifs.

And finally, I must mention the excellent care I have been receiving from Danbury Hospital and Physicians for Women. I have the best doctors and am getting excellent treatment. My gyno called today just to check to see how I was doing and to tell me he was praying for me. My oncologist always makes me laugh and calms me down when things get scary. My radiologist is straight-forward, efficient and doesn’t mince words. My surgeon is the one who took out the cancer and to her I am forever grateful. She respects me and explains things in ways I can understand without talking down to me. My team of doctors are all superstars in my book. We are on top of things and taking care of business.

And me? I’m taking things one day, and sometimes one hour at a time and I know that one day soon it will all be over.

Click here to support my breast cancer battle on GoFundMe.

#MyLeftBoob Chronicles Day 64: Another Lump, Another Biopsy, Another Few Days of Waiting

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When I told my Facebook friends my doctor wasn’t too concerned about anything when I went for my follow-up, that was only a “half truth.”  She wasn’t concerned but I was.

Monday, June 8, 2015

I went for my follow-up visit with the surgeon Monday expecting for an “all clear” but heard the news no woman wants to hear….ever….they found a lump. Another lump.

“There seems to be a little bit of a lump underneath the scar tissue,” the Nurse Practitioner said with an all-too-cheerful voice for this type of news. Another lump? But I’m going through chemo? I’ve already had three lumps. What does this mean? Is the chemo working?  I tried to remain calm while all of these scary thoughts started racing through my mind. This would be the fourth in five months.

The first they took out during a lumpectomy on Feb. 17. The second was just a swollen lymph node. The third I had checked at the “big” cancer center and was told it was just a cyst. That doctor ordered a PET Scan which came with great news– No Evidence of Disease. I am “NED” as on March 8, 2015. So then what is this new lump?

I sat quietly in my pink hospital gown praying and trying to remember all of the healing scriptures I had meditated on before. The surgeon came in and didn’t seem to be too concerned with the news from the nurse.

“It’s unlikely for something new to grow while you’re going through chemo,” she assured me.

“Then what is it? I’m just nervous because of the type of cancer I was diagnosed with and its high recurrence rate,” I said.

“It seems to be a nodule underneath the scar tissue that we will want to watch,” she said. “You can wait until your next mammogram at the end of August or get an ultrasound sooner.”

I opted for the latter, hoping for them to tell me it looked normal. No such luck. I went down the street to the radiology department and waited for good news. The ultrasound technician said it looked like normal scar tissue and fluid to her, but the radiologist would have to look to be sure. Yay! That sounded hopeful. The radiologist came in and looked but he was not as reassuring.

“This dark area could be scar tissue but I can’t tell you with 100% certainty that it’s not cancer without doing a biopsy. It’s up to you whether you want to wait until your next mammogram in August, or we can schedule a biopsy for this week if you want to put your mind at ease,” he said. “I’m sorry I don’t have better news but I can’t tell you for sure 100%.”

I called back the surgeon to tell them to schedule the biopsy and waited to hear back regarding the appointment date.

Tuesday, June 9

More waiting. Try to stay positive. Try to think good thoughts. Focus on the good: “Stage 1. Has not spread. Not likely to be cancer.” I waited all day for the doctor to call me back. I just wanted to get this over with. I finally called them late Tuesday afternoon after hours of waiting and pushed them to give me an appointment A.S.A.P.

My biopsy will be on Wednesday. Tomorrow. Oh boy. We didn’t tell the kids anything yet. I wanted to wait until we had some news before I told them anything. It was hard to put on a brave face but I managed to for most of Tuesday and Wednesday.

Wednesday, June 10

I did all my work and scheduled out my posts ahead of time in case it would take a while. My husband drove me because I didn’t know how I’d feel after. I had the same radiologist I had for my first biopsy in January so that was reassuring. The mood in the room was light and casual. I had a good feeling about this. I talked to the ultrasound tech about her tattoo which she told me was the bleeding heart of Mary, A sign. God is with me. Everything will be okay. It has to be. I have a lot more living to do! I have a book to write and a documentary to finish. And it has a happy ending!

The doctor came in and explained what he was about to do: stick a big long needle in my left boob to numb it. Then I would feel some burning and he’d stick me again to make sure I was good and numb before he cut me open. I’m not looking at the needle. Deep breaths. Good thoughts. I was now numb and he started working. He took about 4-5 samples, which sounds like a very loud staple gun right in your ear,  while the tech pressed down hard with the ultrasound probe to guide the doctor on the screen as to where to take samples from. He inserted a titanium clip in my boob in case more surgery was needed at a later date. The whole procedure took a little less than an hour.

After two allergic reactions I’m always concerned about follow-up so I asked him about the wound care. He apparently went into auto-pilot while explaining to wait 24 hours to shower but when I do shower that I can wash my hair, just don’t let the shampoo run over the wound.

“Ummm, that won’t be a problem because I don’t have any hair,” I told him. We all got a good chuckle out of that.

Next I had to go get a mammogram to photograph the site- pretty uncomfortable after just being cut. I went home with a gauze pad and an ice pack on my boob, holding on to hope that they will tell me “it’s nothing.”

My mom came over to drop off some veggies for my shakes and I wanted to tell her what was going on but couldn’t because my daughter was there and I knew I’d break down. So I had to hold in this scary news for another day.

Thursday, July 11

More waiting, more waiting, more waiting. As bad thoughts swirled quickly through my head I tried to combat them with good thoughts, prayers and healing scriptures. I waited half the day before I couldn’t stand it anymore and tried calling the doctor for results.

Finally the nurse practitioner called me with the news. Her delivery was very similar to the way I got the news back in February that I had a “rare and aggressive type of breast cancer only 1% of women get called Metaplastic Carcinoma.” She basically dropped the bomb and ran.

She told me that I have ADH – Atypical Ductal Hyperplasia. HYPER WHAT? Another weird, unusual, rare, abnormal thing I couldn’t pronounce and it didn’t seem like she knew much about. Or I wasn’t understanding her explanation. Again, I was left with no info and now had to wait for the doctors to call me back when he/she has time. The nurse said it’s not cancerous but something that will have to be surgically removed and watched. Great. MORE surgery… as if 6 cavities, 1 tooth extraction, a lumpectomy, port surgery, 2 E.R visits all in 5 months was not enough.

I called my husband to tell him the news. As I began talking I lost it and my sweet puppy immediately jumped in my lap to try to comfort me, hugging me with her paws and licking my face. I tried to act normal when the kids got home. I was still waiting for the doctor to call to explain what this all means.

Then finally, not one, not two, but three doctors all called back at the same time! I had 2 on the cell and one on the home phone, trying to juggle who to speak with first. I chose my surgeon and called back the other two. She said the lump will have to come out but it has to wait until after I’m done with chemo. She said again that it is not cancer,  just a few abnormal cells. I could barely focus on what she was saying, my mind distracted with the other 2 doctors on the other lines. She said we’d discuss more on Monday at my next follow-up.  “I hope that helped,” she ended the call with. “Yes, thanks.” I didn’t hear a word you just said.

My oncologist called back next to explain that the lump is very small, in a single duct and there are just a few atypical cells. He said some may say it’s pre-cancerous or an indicator that I could get cancer but we already know I had it and we already got it out. And I’m getting chemo so he said it’s like getting an abnormal PAP smear– it’s not cancer but it’s something to watch.
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My oncologist, radiologist and surgeon all agree the new lump needs to come out but said I don’t need a mastectomy. I’m going to get a second opinion anyway because I don’t want to have to worry that it will come back.
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I feel like I got the wind knocked out of me all over again but I’m trying to stay positive and keep the faith. It’s tough when I keep getting pummeled over and over again but I guess that’s what it means to have your faith tested.
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There’s a Bible verse that says if I have the faith of a mustard seed I can move mountains so that’s what I’m believing…..that the lump is the size of a tiny mustard seed and once it’s out this huge mountain I’ve been trying to climb over will MOVE and be gone for good!  I just need to get through this bump in the road and keep fighting hard.
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Friday is Relay for Life which will be a nice distraction. It will be something good good to do to help others, honor those we’ve lost to cancer and support those still fighting like me. Our team has raised $2,400 for the American Cancer Society which is awesome! And I continue to blog and write to raise awareness for early detection so something good has come out of this horrible thing.
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If you’d like to support my breast cancer battle on GoFundMe, click here.

#MyLeftBoob #BreastCancer Battle – #Chemo Day 35, Almost Halfway There!

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Day #35 -Almost halfway there……

I thought I had escaped a week free of “most” of the side effects from A/C chemo but woke up this morning with extreme nausea and pain in the back of my head again. Ugh. It’s so strange how it can have such a “delayed reaction” and then hit me an entire week later out of nowhere. But this is something I am learning to live with…. for now.

My eyes have been burning for about 2 weeks. I thought this was due to allergies but apparently it’s yet another symptom to heap on to the list, along with dizziness, nausea, fatigue, metal taste, mouth sores, bone pain, headaches, etc.

The Claritin seems to be helping with the rib and muscle pain and I only have one more Neulasta shot to endure so there is a light at the end of the tunnel.

I just found out today that I will have to get another echocardiogram to ensure my heart is strong enough to endure the last A/C treatment on May 21. This is a standard procedure to test heart function and I expect everything will be fine.

Next Thursday 5/21 is the last of the 4 A/C part of my treatment and then beginning on June 2 I will start 8 weeks of Taxol, followed by 6 weeks of radiation. 62 days of chemo left. The countdown is on!

To support my breast cancer battle on GoFundMe, please click here.

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#MyLeftBoob Chronicles: Gripping Fear and Grappling with Wigs

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Two-and-a-half hours of sleep can do a number on your emotions….. even without going through chemo. It was another rough one last night…. not with much physical pain this time…. more like mental anguish. This is when projects and distractions come in handy.

Last night’s project was to find the best wig. While my scalp is still pretty sore from the hair falling out, and I am not completely bald yet, I’m growing tired of trying to cover the splotchy peach fuzz with one lone scarf. So I decided to try on some of the wigs that I ordered. I put the 4 options (pictured) out for a vote on my Facebook and Instagram pages. Most people seemed to like the bottom left.

While the hair loss is only just one of the many side effects I’ve been experiencing from the Adriamycin, Cytoxan and Neulasta, it is a big one. It’s important to keep a positive mental attitude throughout my treatment and feeling like I look halfway decent will definitely help with that.

Last week was unexpectedly rough with the delayed reaction to the ACT. Thursday and Friday the muscles in my legs and bones hurt so bad I wanted to cry. But instead I downloaded an app (Bible Gateway) and listened to Psalm 103 over and over to soothe me to sleep.

It seems the darkest part of my battle comes very late at night….

The fear says:

*What if the chemo isn’t working?”

“What if it comes back?”

“What if this pain in my ribs is ‘something?'”

“What if I end up like so-and-so who didn’t make it?”

The faith says:

“The chemo IS working – that’s why my hair is falling” out”

“Trust that the doctors are checking me continually, and I know my body, so any new lumps and bumps will be checked.”

“The pain in my ribs is bone pain, a side effect from the Neulasta.”

“So-and-so waited too long to go to the doctor, the other so-and-so was misdiagnosed, and the other so-and-so was at a completely different age and stage. I am only stage one. It has not spread. Focus on the positive.”

Last night I couldn’t sleep because all of those dark thoughts swirling through my brain.

So…. if you are one of the people sending me stories about your loved one who passed away from cancer, I am so very sorry for your loss. My heart breaks for you and your family. You were robbed. Cancer sucks. I wish that didn’t happen. I wish your loved one was still here with you.

But until I am done with my treatment, please don’t send me stories like that. It only adds to the fear that we (cancer patients) already experience daily. Right now as I go through treatment, I need to only hear positive and uplifting stories. I need to hear about survivors. I need to be surrounded with hope and strength. This may sound selfish to you but I have to be selfish right now for my mental, spiritual and physical health.

Unless you’ve been diagnosed with cancer, it’s hard to understand. And unless you’ve been diagnosed with a rare type of cancer that was only just discovered 15 years ago that not much is known about and has a higher rate of recurrence, then it’s even harder to understand the gripping fear that takes over at times.

That is why it is so important to feed my faith and feed my spirit. I’m so grateful to have been connected yesterday with a wonderful support group at Walnut Hill Community Church, right here in my hometown, Bethel, Conn. I know this will play a huge role in keeping my spirit strong and help in my recovery.

The leader is a 10 year cancer survivor. The ladies in attendance are survivors, full of faith, prayer warriors. They have been through it and and are all wonderful!

Here is a scripture that the leader read that really touched my heart from Romans 8. Those who are believers will “get it” and those who are Atheists or Agnostic, think of these words as beautiful poetry, because that is what it is!

“18 Yet what we suffer now is nothing compared to the glory he will reveal to us later. 35 Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? 38 I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons, neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. 39 No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.”

Thank you all so very much for your love and support, for your donations and well wishes, for your continued prayers. You are all helping make my battle so much easier and I am forever grateful!

And now it’s time for a nap! 🙂

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