guest blogger, Side Effects

It’s Just Hair

By Taylor Eames

Facebook memories are a wonderful thing, aren’t they?  A few days ago, it reminded me that I lost my hair a year ago.  I reread what I had written that day, and tears came to my eyes as I remembered the emotional impact this moment in my life had on me.  Let me share what I wrote on April 8, 2016:

FB_IMG_1491923778829

“Last night, kind of suddenly, my hair started coming out in fist fulls.  I went from having a firm grip on my hair to it coming out so easily almost within minutes. It hit me hard. The thought of waking up and finding clumps of hair on my pillow gave me an anxiety attack. So we did what most do during this phase in chemo and shaved it off. It was a very heartbreaking moment in this journey. I never expected it to affect me that greatly. Yes, it’s only hair and it will grow back. But I feel a huge part of my femininity was taken from me. Also, everyone’s looks change drastically when their hair changes. I wept as my mom took the clippers to my head. Actually we all did. My mom cutting my hair, my sister on skype [in San Francisco], Annie [my daughter] (who’s in Michigan visiting her dad) also on video chat. We all just cried. We had joked about the shaving of the head being a fun occasion, but it wasn’t. It was like mourning a loss. Yes it’s only hair, yes it will grow back. But it still hurt me to the core. It will take some getting used to. Eventually it will be the new normal. Maybe later, after I get up for the day, shower, put some makeup on, and don a cute hat, I’ll shar
e a picture. But I have to allow myself to feel the full gamut of emotions or I’ll implode.”

FB_IMG_1491923772671

I remember after the shave, I went to my room and cried some more.  Then I didn’t want anyone to see me for a while.  I hid in my room as my family continued their lives.  Finally, the next day I was forced to emerge from my solitary sanctuary and rejoin society.  This time as a bald cancer warrior.  Now I wore my badge, now everyone knew I was fighting cancer, I was getting chemo.  Now people looked at me differently.  Some with pity, some with admiration, and some with wonder.  Some stared, some purposely would not make eye contact.  And then there were the ones who boldly asked where I was in treatment and how I was taking it.  I didn’t know how to react to that.  Was it rude of them to ask or was it nice of them to make conversation with me and treat me like a normal person?  I guess I didn’t have anything to hide, so I was glad to talk to people instead of getting strange looks.

Later on in treatment, I was at a waterpark with my family.  I wore a cute floppy bucket hat for the most part because chemo makes you more susceptible to the sun, and my bald head was sensitive.  But we live in Arizona and this was the end of July where temps average 115 from day to day.  At one point, I was laying in a wading pool watching my kids play, and I decided to take my hat off because it was making me sweat.  (Don’t worry, I was slathered in sunscreen!)  It only took a few seconds for kids to start looking at me strange. Eventually, one little girl splashed up to me and said, “Why your hair like that?”  My daughter protectively said that I have an illness and the medicine makes my hair fall out.  She looked at me with concern and said, “You ok?”  I smiled and said, “Yes! Thank you!”  That satisfied her curiosity.  She smiled back and she happily splish splashed away.

I lost my hair in April, and it barely started growing back in September.  I kept my head covered in public with hats or bandanas until December.  Like I said, I didn’t think not having hair was going to affect me so much, but it does change everything about the way you look and the way people look at you.  I wasn’t comfortable braving the bare look outside of the home, but others are.  Some do just fine with the shaving of the head, some even celebrate it.  And some mourn the loss, like I did.

Whatever the reaction to losing your hair, it’s yours.  No one can understand what you are going through unless they have experienced it themselves.  Yes, it will eventually grow back, but the fact is your look is changed for at least 2 years.  It’s not just hair.  Regardless of how you handle it, just remember you are braver than you know.


photogrid_1489558558749.jpg

Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

Advertisements
guest blogger

It’s Okay to Not Be Okay

By Taylor Eames

When my psychiatrist said “Post Traumatic Stress Disorder,” I was kind of stunned.  There was not one major, impactful incident that had happened in the last four years that could cause what I was feeling.  In fact, there were several things that happened–a painful divorce, moving, caring for my mentally ill son, a cancer diagnosis, moving again.  I didn’t realize that these life events had compounded together to cause some deep depression episodes and debilitating anxiety attacks.

I finished treatment in August of 2016 and had surgery in October.  I got the glorious news that my path report said “no evidence of disease” shortly thereafter.  My hair was growing in.  I was no longer constantly nauseated, and I was gaining my energy back.  It was over.  Now it was time to move on and be healthy.

But I couldn’t.

The moment the surgeon read the path report as no evidence of disease, I thought I would be elated.  But the truth was I barely believed him.  I didn’t smile, I didn’t cheer.  I just didn’t care.  It was reminiscent of when I received my diagnosis actually. “I’m sorry to have to give you this news, but the biopsy indicated malignancy.”  I stood there staring into space, not feeling a thing.  It took several weeks for me to even cry.

The same happened here.  The cancer was gone. but I couldn’t feel any joy.  I couldn’t find it.  I had shared my journey so far on Facebook pretty openly and often in real time updating almost immediately when something would happen.  I hesitated to share this news.   It was like there was a wall in front of me, and I couldn’t step forward.

Then the nightmares started.  Scans that lit up like Christmas lights.  Phone calls from doctors saying they made mistakes.  Chemo again.  Nausea again.  My hair falling out again.  The pain.  I’d wake up covered in sweat, then I’d be unable to sleep.  I’d spend hours in the middle of the night occupying my mind with fluff online just to get the obsessive thoughts out of my head.

I began having deep depressions.  No one really knew about them though.  I have always been able to hide them from everyone else.  I’m a single mom so when I fall, the whole family falls.  I was sick for the better part of a year so I could’t let the depression overcome and disrupt my life, their lives.  I’d go to bed when the kids went to bed, and I would cry. I’d just lie there and cry.  I couldn’t understand why I was so scared now that I was well.  I didn’t know how to move on. I was stuck.  And it hurt.

I got a call in January that my oncologist was referring me to the survivorship program at the Cancer Center.  Survivorship.  So they were going to teach me exactly how I am to be a survivor?  Good, I needed that.

I went to the appointment and the nurse practitioner asked me how I was doing. I said my normal, “I’m fine.”  And she just looked at me.  I knew, she knew I was not fine.  I cried.  I told her everything.  She just sat there and listened intently for a good 20 minutes I’m sure causing her next appointment to run late.  She knew I desperately needed help finding my way and just let me sit there and get it all out.  The best part was that she didn’t interrupt me.  She just let me go and go.

When I was finished, she said she was proud of me.  She said this part is almost as hard as the treatment.  Moving on afterward, facing the future with doubts and fears, not knowing what to do next, it’s difficult.  Everyone expects a cancer survivor to be glad it’s over and see joy in a future of health.  But when those feelings don’t come, it’s common for the survivor to struggle in surviving.  Survivors don’t know that it’s okay to not be okay.

The nurse practitioner decided to send me to a psychiatrist.  I have a history of bipolar disorder and already take psychiatric medication so adding on to them was something she wasn’t comfortable handling.  I agreed.  In fact, changing or adding meds scared me quite a bit.  I had been on the same med regimen and been stable for the last 6 or 7 years.  I felt like this was more an environmental problem than a chemical problem.  But the fact was I was drowning in my own emotions and needed some help, even if that meant adjusting my medications.

I talked to the psychiatrist about what was going on.  He asked me questions about my life before cancer and how I coped with everything going on in my life.  She said that the amount of trauma I had experienced in the last four years is more than many face in their lifetime, and he wasn’t surprised I was now falling apart.  He said I tried to be strong too long, and it was time to give in.  I breathed out a sigh of relief.  I was keeping myself to a standard that was clearly too high for anyone, not just me.  And I needed someone to actually say that.  Again, it’s okay to not be okay.  My new mantra.

He ultimately ended up adding an antidepressant/anxiety to my medications.  It’s a low dose, but within a week or so, once I got past the initial adjustment period, I felt a difference in myself.  He also referred me to a psychologist for therapy.  He said it wasn’t healthy to keep it all in the way I had the last several years.  He said that it’s okay to be strong for my children, but I need to be weak for myself every now and again.

This is a part of treatment that isn’t really talked about.  But your mental health is as important as your physical health.  It is okay to be scared of the future.  It is okay for you to fear that the cancer will return.  You are not the only one feeling that way.  You need to let your doctor know when you are struggling, when you can’t get past those feelings.  Your mind is part of your body.  You need to take care of it too.


photogrid_1489558558749.jpg

Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

guest blogger

Cancer is such an ugly word…

By Anna Rathkopf of CzechMomNYC

Swp-1490826994133.jpgaturday, December 17th. It’s snowing, everything is white, calm and clean, I am playing with my little guy outside. It’s been a day since I learned that I have breast cancer. The snow is falling. I am exhausted, the same goes for my husband, our little guy is laughing and playing.

No, I am not going to pretend to be tough and say that the next days were easy and fun. Did I fall apart? Probably. I don’t remember much. There is a feeling of this big black hole that opened inside of me, and I had no idea how to close it. That feeling didn’t last long, an hour or two, and then an exhaustion and a feeling of breathlessness.

I cried. I cried twice. Once because of the English word cancer. The next day I told myself the horrible sentence in Czech, my native, mother tongue. I told myself: “I have a cancer. Cancer. I got cancer.” That really got me. I am bilingual, a brain split into two. I cried and cried.

My in-laws shopped and cooked. My mom-in-law slept at our place.

Sunday night I decided to do something. To do something small so that I could take control over it. I started to research good food for fighting breast cancer. But I found stories of breast cancer survivors, and I realized that I don’t know anything about this disease. And then the questions popped up. “Is it only in my breast?” “What type of cancer do I have?” There are so many types and possibilities and all look positively shitty. Wow that was definitively on top of my idiotic ideas. It has to be up there with my idea of showing off my backward hanging ability on a ten inch high bar when I was seven.

I panicked. Simply and clearly panicked. I couldn’t breathe and felt that the cancer is everywhere in my body. Panic grows inside of me. “This is what I have to live through every day.” Tried to cheer up my husband with his anxiety streak.

My in-laws and husband are cleaning up. My mom is looking for a flight ticket.

One thing changed during this horrible never ending weekend. I found my own path out. When the panic gripped me and wouldn’t let go I started to imagine my son’s sleeping face. That innocent face calmed me down, it transferred me into a different much nicer realm. I started to change my thinking from “I don’t have this” into “I’ve got so much, and I am so grateful for that.”

No more internet research but my mom-in-law still sleeps at our place.

The results came. We decided that my husband will be the person to deal with the doctor’s office. He will be the person who will know the results first. I admit that after the initial shock of learning that I have cancer I cannot deal with it. I am a wimp. My cancer is estrogen positive. “That’s the cancer you wanted.” Says my doctor. Skipping the idea that it’s cancer and that I never wanted to have it, I guess when it’s here I will take this one over another. My sister-in-law, an amazing cancer doctor herself, is ecstatic. I still cannot muster the excitement in me.

Estrogen positive is the most common type of breast cancer. The one that they have the most successful results from. Easy peasy, no problem here. My husband is so happy he almost cries. He did some internet research and was terrified. I feel a little better at least I can name it. They are still running some additional testing.

My mom is packing.

Wednesday. My MRI test day. This will show if more cancer is detected in my body. I am scared yet again. Again? Or still? My husband is there with me – he calms me down. “It’s not important what you have. We know its estrogen positive. That’s the most important thing.” Says my amazing husband with such a certainty that I completely believe him.

Again, that striped robe and half an hour without any movement. Of course five minutes32019327300_372ab8bfd5_z into the MRI I have a horrible urge to move. I made it. My husband is waiting for me in the waiting room. He is so calm and reassuring so positive he makes me feel so good. Two days later he told me he was so nervous there he almost passed out.

Our household is full of new words. Chemotherapy, radiation, mastectomy, lumpectomy, biopsy. I heard that they can do reconstruction from my own fat. “Liposuction and breast enlargement in one.” My mom cheers me up over the phone. My friend who had a mastectomy two years ago is showing me her amazing breasts. “Like a twenty year old.” Yes, I always liked dark humor. When the situation sucks at least you can still laugh.

At night we are holding each other – my husband and I. We are hugging and he says:

“Don’t do anything stupid. I love you. We need you. Don’t think about leaving us.” Our little guy comes in our bed and we don’t complain about his kicking us. Not this night or the next one, or the one after.

The results from the MRI came. It’s only in the lump. I will believe it once it’s out of my body. I am scared to jinx it.

My mom finally arrives. She holds me in her arms. I am responsible for her new wrinkles she says. The next morning our little guy cannot believe that his grandma finally stopped flying and came back to him. I think that explains my mom’s new wrinkles. Who wouldn’t age flying nonstop for a month and half. I just hope she didn’t fly Delta.

We feel better. We are getting used to our new “normality.” I have an amazing family, friends, people around me. I need all their support and love. And I think about people who are fighting this bitch and don’t have anybody around.


wp-1490826974077.jpg

Anna is a 37 year old mother of three year old boy. She is originally from Prague, Czech Republic, but has been living in NYC for the last 10 years together with her Brooklyn born husband. On December 16th, 2016, she got the life shattering news that the lump she found in her breast is actually not nothing but something…something called cancer.  She decided to start a blog, CzechMomNYC, about her experience and about a life of a mother with breast cancer diagnosis. She and my husband also started a photo project of their lives as it is now, fighting this horrible hidden enemy.  Follow their project on Facebook.

guest blogger

Scanxiety

By Kelly Nemecek

PicsArt_04-07-09.32.28

Many fellow breast cancer survivors, myself included, freak out about scans.  This is actually a thing we call scanxiety.  It’s the anxiety you feel while waiting for a scan, during the scan, and waiting for the results of the scan.  Before I go any further I want to point out that not everyone needs the same scans and while certain scans are appropriate for one patient, they may not be appropriate for another.  Even among breast cancer patients with the same diagnosis, there may be factors that warrant a different approach to imaging studies.  Having scans is a double edged sword-you want the scan for your peace of mind but in the meantime you know you’re going to get all nerve wracked and distressed.

I remember the PET scan I had after my bilateral mastectomy.  I asked the technician when I might receive the results, and she said my doctor would probably want to meet with me to go over them.  I know these were the words she spoke but all I heard was “he will want to see you in person because the cancer spread everywhere and you’re dying and he won’t say that over the phone.”  Waiting for my oncologist to call with the results was like waiting for a clemency call from the Governor.  When he finally called with good news, I made him say it like four times.

During the expansion process last year, my plastic surgeon found a pea sized bump on the scar where my lymph nodes were removed.  An ultrasound was ordered which triggered an acute case of scanxiety.  The radiologist performing the ultrasound was even the same doctor who performed my fateful ultrasound in 2015.  As soon as that probe touched me, all manner of horrifying thoughts flooded my brain, and I had the worst déjà vu imaginable and then experienced flashes of my future with morbid thoughts of my funeral, my daughter growing up without me, taking my last breath.  In a matter of moments, I was in the depths of despair, imagining every macabre scenario.  Then I heard the radiologist saying something about a benign oil cyst, nothing to worry about and come back in six months.  After all that self-induced drama, it turned out to be an oil cyst/fat necrosis.  PHEW!  For now.  See, for those of us with breast cancer, or any type of cancer really, the anxiety is always there.  In my case, it’s been either all-consuming or bubbling just below the surface.  I will be headed back in a couple of weeks for a six month check of my oil cyst, so I decided I needed a plan to combat this fear.

There are methods I’ve found to deal with scanxiety and fear of recurrence so it does not rule my life.  When I’m feeling apprehensive about a doctor’s appointment or a procedure, or even a simple headache I’m convinced is brain metastasis, I go to my happy place in my mind.  Usually this is either on a beach somewhere with my family or a comfy hammock where I am reading my favorite book.  I practice deep breathing.  I blog about my thoughts, my reservations and my blessings.  I spend girl time with my daughter and appreciate the incredible young lady she’s becoming as she gets ready for high school.  I also found that focusing on helping others helps to distract me from my own worries.  I text my good friend whose husband recently went through Leukemia treatment and see how they are doing.  I check on my pink sisters and offer comfort and support.

I’m not going to lie, it’s not always easy and it is not something I learned overnight, but I have gained a measure of peace and that is something I wish for all my pink sisters.

Scanxiety happens to all of us.  Just know that you are normal if it happens to you too.  It’s ok to reach out to other pink sisters about your concerns.  They can probably relate and will help you through it.


wp-1489976733445.jpg

Kelly lives in Arizona with her husband, daughter, three cats and a bearded dragon named Pascal.  She was diagnosed with Stage 3 Invasive Lobular Carcinoma in 2015.  She can be found blogging about her good, bad and ugly experiences battling breast cancer at Kelly’s Cancer Beat Down Blog

guest blogger

Place of Yes

By Rebecca Weiss

As a writer, I’ve never liked clichés much, but there are a few that ring true to me as I get older, and one of them is “Coming from a place of Yes.” This really is a meaningful phrase for me now that I am a breast cancer survivor.

Because, as I can see now, I’ve spent most of my life coming from a place of “No.”

Growing up I was chubby and at times awkward, a kid who loved playing basketball but got embarrassed by my hot, red “sweaty tomato” face. Interested in the dramatic arts, but mostly relegated to the set crew. I often saw the world in terms of what was for me and what wasn’t. Eying girls in Seventeen Magazine who were waifish with long straight hair and perfect skin, I got used to thinking, “No, that’s not me.” “No” became my default setting after a while. No, I’m not pretty enough for the lead in the play. No, I’m not smart enough to join the debate team. No, I’m not popular enough to get elected to student government.

And, this thinking stayed with me as I went through adolescence and young adulthood. No, I wasn’t polished enough to land the job I really wanted. No, I wasn’t worth a second date. No, I wasn’t going to get a raise. And so on. This kind of thinking invaded my life to the extent that over time I began to experience a lot of anxiety. Among other things, I was a pretty bad hypochondriac, and I think that had a direct impact on my health because I became so used to combatting my panicked thoughts about my health that when I felt a lump in my right breast I told myself I was imagining it and put off seeing a doctor for much longer than I care to think about now.

I spent many years watching my friends and co-workers rise through the ranks, start their own businesses, go to grad school and travel overseas while I convinced myself that I wasn’t going to get anywhere—in my career or in the world and I even developed a fear of flying. On a smaller scale, I would watch people dance at a wedding or sing karaoke and sit it out worried about looking silly on the dance floor or my not-so-great singing voice. I might have thought I had a long life ahead of me back then, but I wasn’t really living. I often saw my life as a waiting game. Waiting for things to change. Waiting until I lost weight. Waiting until my boss finally appreciated me. And, then, in May of 2014 at the age of 43 I was diagnosed with stage 3 breast cancer.

wp-1490930844494.jpgAt first my anxiety took over, and I breathlessly and sleeplessly navigated through the dark fear of losing my life—of leaving my husband and children without me for the rest of their lives, of breaking the hearts of my parents and other loved ones. But, once I got into treatment and stared down the true risk of not making it through, I found my fighting spirit. I faced a hairless, breastless, potentially futureless me, and something shifted. It was gradual, but it was significant. Here’s what happened: I started to see the things I was afraid of before, the things I was so quick to say “no” to, as, just perhaps, being FOR me.

The only no’s I hung on to were related to giving up. No, I’m not going to go down without a fight. No, I’m not going to stop doing the activities I enjoy. No, I will not become a victim. And then, I decided to experiment with “yes.” I sought out what it would feel like to get on the dance floor at the weddings and bar mitzvahs I was invited to. I started interviewing for jobs at organizations and in fields I had always wanted to work. I took the honeymoon trip to London my husband and I were going to take in 2002 but put off. In short, I began to say yes to things big and small that I finally realized I wasn’t going to do if I lived my life waiting. Yes, I realize that’s another cliché. “What are you waiting for?” but, seriously, what was I waiting for?wp-1490930840700.jpg

Here’s what my life is like now that I’ve learned to say yes: I am famous—infamous perhaps—
for my crazy moves on the dance floor. I have a go-to karaoke song that I sing loud and proud despite my near tone-deafness. I’ve been to London—and Utah and Alaska—in just the past two years. I left a job I’d held for 12 years to pursue my dream of working in public radio. And, now the only downside is that I love my life so much I’m afraid to lose it. Yes, I want to be there for my kids and I want to make my parents and friends proud, but mostly I want to continue challenging myself and finding the joy that I never allowed myself before.

There’s room for you—for everyone—here at yes. But, there’s no waiting. Bring your dance moves, your favorite 80s rock song, and your travel itinerary. Then, let me know what you’re saying yes to now.


wp-1490930836462.jpg

Rebecca Weiss is a 46-year-old breast cancer survivor whose life changed completely when she was diagnosed as stage 3 in 2014. A journalist and corporate communications professional, in 2015 she started Bob’s Boxes, a 501c3 nonprofit that sends post-mastectomy care packages to women with breast cancer. Rebecca has appeared on the Today Show, was featured in Parents Magazine and the book Live Happy; and serves as a Model of Courage in Ford’s Warriors In Pink campaign. She lives in Rutherford, New Jersey with her husband and two young children. You can find Rebecca on Twitter and Instagram @BobsBoxes, on Facebook at https://www.facebook.com/Bobsboxesorg/ and at www.bobsboxes.org
guest blogger

Every Day

By Sheryl De Witte

wp-1490840195215.jpg

I survived something that could have killed me.  I made it through with the prayers and help from my family, my friends, and my co-workers.

I was consumed by the emotions of fear and shock after receiving my diagnosis; everything moved quickly and was a blur. First were the chemo treatments, followed by a Bilateral Mastectomy and finally reconstruction.  That was it; I was done: I was told “there’s no evidence of disease”.  I was beyond excited and relieved, I had done it, and I had survived! It was time to get back to my life the way it was before breast cancer; everyone around me had already moved on, so why can’t I?

Every day I’m reminded that I had breast cancer. When I walk out of the shower in the morning, I can’t help but see the scars on my chest in the bathroom mirror.  Scars from the port surgeries are sometimes visible to others, but the large scars that haunt me are big and only seen by me and my husband.  They run from my sternum to under my arms and are intersected by another scar that goes up to where my nipples used to be.  There are more scars under my arms from where the lymph nodes were removed and the drains inserted.  I can’t help but remember when I first looked at myself a couple of days after surgery and how horrified I was at what I saw.  I looked like something out of a horror movie.  My breasts were gone and in their place I had large, angry looking incisions that had been sewn together.   I had horrible bruising, drainage tubes coming out of me, and I had no nipples.  Had I made the right choice?  This decision truly had been mine, and I thought I was prepared, but I wasn’t.

Every day I am frustrated by an increased anxiety which I do not understand and cannot seem to get under control.  It hits randomly and sometimes viciously.  I get apprehensive in groups of people, or when I’m waiting for something or someone.  It makes my stomach upset, so I never go anywhere without finding the nearest restroom and knowing my escape route. It limits me and makes me wish somedays that I never had to leave my house.

Every day I think about how I need to lose weight, how I should be eating only “healthy” foods and exercising.  But I’m tired, my energy hasn’t fully returned.  When I come home from work all I want to do is sit on the couch.  I try to not drink anything out of a plastic bottle, and I no longer use regular deodorant; instead I use the natural stuff because it’s supposed to be better for me.  I have no idea what caused my breast cancer; if I only knew then I would be certain to never eat or drink it again, or to never use that product anywhere.

Every day I get hot flashes.  My coworkers are all cold, and many have heaters on- not me, I’ve got my fan on, and I dress like it’s summer, even in the dead of a Minnesota winter.

Every day I try to get back to where I was before breast cancer, but I can’t.  You see my sister is dying from breast cancer.  Her cancer came back, even though she had done everything right.  She ate healthier, she exercised, and she had had Chemo, a Bilateral Mastectomy, Radiation and reconstruction.  Still, it came back with a vengeance.  She too had been told there was “no evidence of disease”.

I know I need to move on and not live with the fear of it coming back, but I don’t know how to do that.  I hope that over time my scars and anxiety will fade, and my confidence will come back just like my hair has.  In the meantime, I will do my best to carry myself like the warrior that I am.  I will strive to see the best in everyone and in every situation.  Most importantly, I will pray and rejoice that I have been given a second chance.  I will be thankful for every day that I have been given,  for every sunrise and sunset, for every bird I hear chirping, every flower I’m able to smell and for the time I spend with my family, my friends and my coworkers; because without them, I may not have made it this far.


wp-1490840655890.jpg

In Oct 2015, Sheryl was diagnosed with IDC.  Both of her sisters had previously had breast cancer, so it really shouldn’t have been a surprise to her, but it was.  She went through chemo followed by a bilateral mastectomy, and in July of 2016, she had reconstruction.  She did not need radiation as my cancer was Stage 1.

guest blogger

When the breath stops for a while…

By Anna Rathkopf of CzechMomNYC

At the beginning of December, on my birthday I gave myself a very peculiar gift. I found a lump in my right breast. A little round, pea sized, lump. My breath stopped by the idea, by the feeling, by the enormity of it.

What did I do? I went on google. The biggest mistake a person could make? Probably, so. I went to my husband. His breath stopped.

Yank’s worst nightmare? His mom had breast cancer, 23 years ago. Nightmare, shitload of it, the feeling of the biggest fear and a nightmare in one package. My husband was 12 years old at that time. Yes, he is not that scared boy anymore. He is now a father and a husband, scared.

The internet wasn’t enough. So I decided to have it over with and set a doctor’s appointment.

The week after the peculiar gift was given to me by me I was with my husband and his mom in the hospital to begin this story.

wp-1490826997375.jpgIt started with the American classic, the financial and the health insurance. Even after ten years living the American insanity of the health insurance system or un-system, I still find this absolutely crazy. My European brain is still unused to the idea that a sick person needs to clear with the financial side first and then maybe deal with the sickness.

The activation of my “Cancer resource services.” I admit I left that for the last minute. I didn’t want to deal with the word cancer, it scared me. Sorry, my husband, I left it on you. I had to. I was too sick in my stomach. Too scared by that word.

After the stroll to the financial department I had to fill around 30 pages of my family history. To the question on page 28, “No, I don’t have the Alzheimer’s. If I had that I would have forgotten, what to fill by that time.” “But thanks, that question definitively uplifted my mood.” The words around me: “Last radiation,” “my chemo,” all that was making me giddy with my nerves.

First examination: “It looks good. The lump is nice and round.” The doctor’s calming voice sounded in the background to my heart beats in my ears. “The risk is minimal, you are young and healthy, no background of breast cancer in your family.”

Second examination: Mammogram, one floor up, changed into a pink stripe standard robe. I entered the realm of pink, pink for the breast cancer ribbon? All the women around me, dressed the same. My husband sitting with his mom in a different waiting room. Divided but nervous the same. I have my book with me. I can read and not think. Mammogram, what a strange machine for women with small breasts. I have to hug and hang on the monster, my legs wrapped around it just to be able to have my breasts squeezed in it.

Third examination: The same floor, a little bit further in, it seems that the further I move in, the further I am being sent into that special club. The club I don’t want to be a member in. My sister-in-law came in, to cheer me, to lift my mood. Yes, it helped. Every cheer helps, even if it’s just for that moment, that second, your brain moves into a different realm. An ultrasound, the last time I had an ultrasound done I was pregnant, I heard the heartbeat of that tiny worm growing inside of me. The heartbeat made me so happy, the last time I had an ultrasound done. I am the only person now who can hear the heartbeat, the heart beat in my throat.

“Somebody cancelled a biopsy. We have time in half an hour.” “Sure, I want that.” I answer while thinking about the woman who cancelled hers. Why would she do that?

Fourth examination: A biopsy. I am scared, a little, not much, a little. The doctor describes every move she does. I prefer to look at the blank ceiling. A pity, some nice picture on the ceiling would be nice. “You are right, the TV behind your head, they installed recently is kinda for nothing.” Agrees that nice nurse. “I gave you, inside your lump a little mark. Just so that we can find it in a case of surgery. Don’t worry you won’t set any airport security.” “The results? Tomorrow, maybe Monday.”

Fifth examination: Mammogram, yet again, just that breast, now with a mark and a bandage.

Finally outside. My husband and my mother-in-law relieved, hugging, ready to go. The doctor again: “It looks good. We will know everything after the biopsy but it looks good. It’s so small the mammogram didn’t find it. Sleep well.”

Relieved? Sure. Exhaustion more like it. Waiting.

The day after: Friday, December 16th at work, my phone is ringing. “Sure, I have time.” “Unfortunately the biopsy shows invasive cancer cells.” My breath stops, but this time it doesn’t want to start again. She talks and talks, and I cannot breathe, my throat is tight, so tight. Why am

wp-1490826994133.jpg
How do I tell Jesse?

I crying? Nobody died. “What? No, I don’t need anything. I am fine, just fine.” Breathe in and out, in and out. Just get her to stop talking. I don’t want to talk to her. I don’t want to hear her.
I call my husband. He is not picking up. I am shaking. I call my mother-in-law. “Oh, God, God.” I am going to her. I need to hug and hold somebody. I tell my coworkers something about bad results. On a way out I call my mum. “Oh God, God.” It’s not even funny that they both said the same thing, in different languages, two mothers. I will never forget their voices. The same breathless responses.

I am sick in my stomach. I am in shock. My mother-in-law is waiting for me at the door. She holds me. It helps. Breathe.


wp-1490826974077.jpg

Anna is a 37 year old mother of three year old boy. She is originally from Prague, Czech Republic, but has been living in NYC for the last 10 years together with her Brooklyn born husband. On December 16th, 2016, she got the life shattering news that the lump she found in her breast is actually not nothing but something…something called cancer.  She decided to start a blog, CzechMomNYC, about her experience and about a life of a mother with breast cancer diagnosis. She and my husband also started a photo project of their lives as it is now, fighting this horrible hidden enemy.  Follow their project on Facebook.

guest blogger

I knew it was different….

By Lauren Miscannon

I was diagnosed in Dec 2016 with Breast Cancer at the age of 44.  I knew for years that I had a high chance of getting the disease because my mother was diagnosed at 42.  I had very dense breast tissue so it was very difficult to feel anything unusual as everything felt like a lump to me.  My mom and I both had the BRAC1/2 performed in 2009, which was negative…. thank God!

Every year from that time though I needed extra testing, either addition Mammograms or biopsies because of my dense breast tissue.  However, this past year when they sent me for the MRI after having my first 3D Mammogram and then an ultra sound, I knew it was different.

Because of the holiday, I had to wait 4 weeks to have my Bi-lateral Mastectomy.  I opted to do that verses possibly having radiation.  I wasn’t upset about losing my breast as they have always been an issue for me as well as having sagged because of my losing a large amount of weight back in 2009.

My surgery was scheduled for Jan 11, 2017 for the mastectomy and reconstruction.  However, the most infuriating part of this which added to my stress was that my boss laid me off the day before my surgery!  Now I have to search for a job during my period of recuperating!  The worst part is trying to figure out the whole medical/Obama Care aspect of this.  As I had no income my health insurance premium went through the roof.  I wanted to keep it because with the surgery being in Jan, I met and exceeded my deductible.  So now everything is paid except that high premium!

After the surgery, I finally met with the oncologist and they told me that I had several other precancerous lumps in my other breast.  I am glad I went with the bilateral!  She told me that I had lobular carcinoma in situ stage 2A, Grade 2, ER/PR positive and HER2 Negative, but I had 3 out of 12 lymph nodes positive.  The oncologist wanted to do further testing on my lumps from the Mastectomy.  I had to go for a PET Scan and they sent my cells to a lab in California.  I had to wait 3 weeks for all the results.  The report said that if I take Tamoxifen I have only a 10% chance of cancer returning.  My only concern is that my gynecologist says that I am in menopause, but since removing my IUD, we’ve realized that is not the case.  Everything I have read says that I should have my ovaries removed because of the history and being ER+.  My oncologist says it doesn’t matter, but I am waiting to hear back from my gynecologist.  I beliemy dadve either way, I want them removed!

I have to say that the biggest supporter has been my dad.  I feel bad as he had to go through this with my mother, not only with her breast cancer but with two bouts of lung cancer! Regardless, he has gone with me to most of my appointments.  I don’t know what I would do without him!

I do have two high school children that have also helped when asked. But I am having more of an issue with my kids especially my daughter.  Back in 2009, I got a divorce, and we moved from PA to FL.  I believe she blames me for everything even IMG_4244.JPGthough, with the advice of her therapist, I told her the real reason why we divorced and moved. He cheated!  All she does is spend time in her room isolating herself.  It is making me depressed as she would not even go to a movie that she wanted to see!

Some other support I have found is on Facebook or other breast cancer websites.  I am just getting out there, so I don’t know too many other people yet.  I also just went this past week to a church support group which was very helpful.  My only concern originally going was that everyone was going to be in their 60s or older as I live in Gulf Coast, FL.  But that wasn’t the case.

After all the research and talking with others, I can’t believe how many different forms of Breast Cancer there are.  It is all very overwhelming.

I’m getting my last expander fill for my reconstruction this week March 22, 2017, so I hope to have my implant in around the end of May.  That would be a great birthday present!!

I haven’t had any side effect for the Tamoxifen.  I have been more interested in learning about Essential oils.  I am starting to check this out, so if anyone can provide some insight!

I have to say that I have been handling the cancer pretty well.  I am keeping a positive outlook and hoping that I find an enjoyable job!


wp-1490627769721.jpg

Lauren Miscannon is a single mother of 2 living in Venice, FL.  She is 44 years old and just diagnosed in Dec 2016.  She is currently only receiving tamoxifen and should have reconstruction surgery in 8 weeks or so.

 

guest blogger

Dear Caregiver….

Dear Caregiver,

You are my rock.  This fight is hard.  It’s taking everything out of me.  But you are there for me through it all.  You help me when I’m sick.  You let me sleep when I’m weak.  You take care of my home, my kids, cooking, cleaning, and more.  I could not fight this battle without your love and support.

I want you to know a few things.

I used to be able to do everything for myself, and now, now I am a shell of who I used to be.  My body is constantly in a fight for its life.  I’m tired.  I want to be up and able to take care of myself.  I want to take care of my home and my kids.  I want my life back.  I may be grumpy and snap at you now and again.  Please remember not to take it personally.

You may not know it, but I’m jealous of your health.  I don’t like to say that because its not your fault I am sick.  I don’t blame you in the slightest.  But I am jealous that you get to go out and have a life.  I know you need more than just taking care of me, but I miss being normal.  I may seem ungrateful when I voice this need.  Please understand it’s not your fault.

Make me laugh.  Take me away from the pain and sickness.  Help me to forget the worries.  Rent a movie, be goofy, sit in my bed and enjoy my company, make jokes. I need to not take life so seriously sometimes, especially when this illness makes it serious.  Please laugh with me.

Let. Me. Vent.  I am sad.  I am frustrated.  I am angry.  I am scared.  I need to cry, and you need to not judge.  Hold me.  Don’t tell me that I’m going to be ok.  Don’t make false promises.  Just hold me.  Love me.  Be there for me.  Let me tell you what I feel.  You don’t need to say anything.  You may be uncomfortable with this, but I need to do it.  Just let me talk.  Cry with me.  I know you are scared too.  Please know it’s ok to show it.

I want you to understand what I am going through, but realistically, you never will.  And I won’t understand what you are going through either.  But we need to try.  We need patience with each other.  I’ll try my best.  But remember what’s going on inside my body.  Everything is coming together, and I am overwhelmed.  I may forget that you have needs too.  Please be patient.

Remember when I am up and moving, even when I am given the news that I have “no evidence of disease,” I’m still fighting on the inside.  I need you to trust that I know my body and mind, and I can tell you when your caregiving is not needed anymore.  Let me tell you that I can do the laundry, that I can care for the children, that I can clean the house, but also let me tell you when I am tired, when I just need to rest.  Also, remember that this intense treatment takes a toll on my mental health as well.  I need you to understand that even though I may be “NED,”  I’m still scared.  Every new health concern from here on out will remind me that cancer can return.  Please trust me.

Most importantly, I want you to know I am grateful.  You keep me going.  You give me a reason.  You do what I can’t.  And for that I say, “Thank you!”

With all my Love,

Your Breast Cancer Warrior

Photo Credit:  Linda R. Martin and daughter


photogrid_1489558558749.jpg

Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

guest blogger

Lucky

by Kathy Foushee

The letter came in the mail in a plain white envelope. An innocuous container for such devastating news. “Your mammogram results were irregular. Please contact our office for further testing.” Several tests, scans and one biopsy later, I got the call. “It’s cancer.”

My world crashed, my mind raced. How had this happened? I had no family history of breast cancer, I had no symptoms – no lumps, no changes. Maybe it was because I was on the pill for so long. Perhaps I drank too much in my younger days.

But I was lucky, because they caught it early.

The day of my surgery, I had an ultrasound, an MRI, a wire guide attached to the remains of the tumor, and a mammogram – all as part of my pre-op. As they wheeled me to the OR for surgery, I kissed my husband good-bye, knowing that the next time I saw him, I would be irrevocably changed.

Three hours later, I woke in Recovery, disoriented and in terrible pain. I hadn’t eaten in eighteen hours. My first thoughts were of my poor husband, waiting and worrying, fielding calls from concerned friends and relatives. The doctor told me it took longer than usual because my nodes were “deep.”

But I was lucky, because I only had a lumpectomy.

The first two days at home, I barely managed to stay awake long enough to eat and go to the bathroom. I counted the minutes until my next dose of pain medicine. The fourth day, I managed to shower and dress myself – a major accomplishment I celebrated with a two hour nap. Half my breast was completely numb for weeks.

But I was lucky, because it hadn’t spread.

More doctor visits and more tests followed. Someone asked if I had a problem being treated by a male nurse. I told her that at that point, half the town had seen me topless, so one more person didn’t matter. Modesty was no longer part of my vocabulary.

But I was lucky, because I had a good medical team.

Radiation therapy was the next step. I burned after the first treatment. My breast swelled, the skin became sensitive, the flesh beneath hardened. Half-way through, I began having nausea after every treatment. Fatigue hit like a ton of bricks. The simplest task became a Herculean task.

But I was lucky, because I didn’t need chemo.

Hormone therapy will be next, followed by surgery to remove my ovaries. My type of cancer is hormone-driven, so reducing those levels will decrease my chance of recurrence – in my breast or elsewhere. It will also send me into menopause 5-10 years early – abruptly, like diving off a cliff.

But I’m lucky, because I had already made the decision not to have children.

Removing my lymph nodes increased my risk for lymphedema, so I can never again have blood drawn or blood pressure taken from my right arm. (Did I mention I’m left-handed?)

I’ll see the oncologist for follow-up visits for the next 5 years. That’s a good thing, since I’m already developing the paranoia of a hypochondriac. Every lump, bump and change is suddenly cause for concern. Every visit will be preceded by worry, anxiety, and the hope that it hasn’t come back.

But I’m lucky, because I’m alive.


wp-1490383029946.jpg

I am a 45 year old wife, cat mother, and university library employee. On December 5, 2016 I also became a breast cancer survivor. I wrote this partly as a rebuttal to all those people who feel the need to tell me how fortunate I am that my cancer isn’t worse, and the ones who look at me and don’t see a cancer patient because I still have both breasts and all my hair. This is my journey so far.