My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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The Never Enough Doctor

Two days ago I went to see my physiatrist.  He is the doctor who monitors my lymphedema.  When I first went to see him when I developed lymphedema, I liked him a lot.  I liked how he took a whole body and whole mind approach to my care.  He’s the one who helped me start therapy when he could see my distress and depression.  He made it happen.  He talked about helping me get a healthier lifestyle to help with cancer prevention.  But the last few times I saw him, I felt like he had an unrealistic view of my life and how I can fit lymphedema care and a healthy lifestyle into my every day.

To my young or youngish survivor friends, I don’t know if this happens to you as well but I have found that throughout my cancer journey there has been a lack of understanding of what it’s like to have cancer and be a working mother.  I know that the majority of patients that are seen are in their 50s, 60s, 70s and older.  50s and 60s is not old in my mind but these women are often at a different point in their lives.  They don’t (usually) have very young children.  They are not (always) building their careers.  To raise a small child and still try to define myself professionally and creatively while having cancer and lymphedema has been my greatest challenge.  I succeed sometimes but feel that I fail a lot.  That’s because I have way too many priorities.  I’ve written about this before.  What do I prioritize?  My health?  My finances? My career?  My son?  My mental health?  My emotional health?  My relationships?  My free time to be me?  I’m often overwhelmed by these questions.

Nevertheless, because I have gained a considerable amount of weight in the last few months, I have chosen to put my health front and center.  I’m unhappy looking in the mirror and unhappy with the way I feel.  I wrote two blog posts ago that I’m having a lot of difficulty losing the weight despite exercising 4-6 times a week and eating a plant based diet (not vegetarian, not vegan just way more veggies and fruits).

The last time I saw the “never enough doctor,” I was told that I needed to exercise more.  I couldn’t figure out when to find the time, especially with the work schedule my  husband had at the time.  I was only weeks out from my DIEP Flap and feeling like hell physically and emotionally.  He told me to “call on my community” to help me get it done.  What he didn’t understand was that my community is also made up of working mothers who have very little (if any) free time.  This pissed me off.

With that being said, in recent months my husband and I have discussed the importance of my health and what sacrifices we could make to help get my health back on track.  This means that my husband is not running as much (he loves to run) so that I have time to work out.  He has also put on weight because he is not running as much as he did previously.  I am also rarely putting my son to bed at night.  When he was in preschool only 2 days a week and I spent more time with him, this wasn’t a big deal.  But now he is in summer camp 5 days a week and will be starting full day pre-k in the fall.  My time with him is getting less and less.  With having to exercise at night, I’m sacrificing some of that time.  But I’m doing it not so that I have more minutes with him but more years.

I’m also sacrificing some major sleep so I can go out, get my work done, do the dishes, pump my arm and wrap it at night.  It’s a lot!

I’m also now seeing a nutritionist.  She agreed that my eating habits are healthy and we are monitoring my progress.

I have to say, I think I’m doing a hell of a lot here.  But according to the “never enough” doctor, I’m…well…not doing enough.

“How long are you exercising,” he asked me?

“35-40 minutes, 4-6 times a week,” I said,

“What exercise are you doing?”

“I’m run/walking and when I can’t get out, I’m doing a kickboxing video.”

He stopped, turned to me, looked me in the eyes.  “You really need to do more.”

“More?  More than 4-6 times a week,” I asked?

“No, not more times a week.  You really need to do 60 minutes.”

What???!!!!????

“You need to do more land based activities. Are you exercising in the gym?”

“No, I run outside.  I go to the park.”

“You really need to join a gym so that you can monitor your heart rate.  It’s more disciplined that way.”

“But,” I said, “I’m having a hard enough time finding the time to do the exercise I’m doing.  Back and forth to a gym is 45-1 hour plus an hour of working out, not to mention waiting on line for a machine…we’re talking at least 2 hours 4-6 times a week!  When am I going to do that?”

“Well, you do what you want to do but, if you really want to lose weight, this is the way you are going to do it.”

Fucking Asshole!!!!!!!!!!!!!!!!!

So, I’m finally figuring out a way to get exercise into my life, which is what he asked me to do last time.  I’m pumping my arm every night.  I’m wrapping most nights.  “You’re not wrapping during the day as well?”  WTF!!!!!!??????!!!!!!!  But instead of trying to find ways to get more exercise into my life (a pedometer to watch my heart rate and this thing called youtube which, I’m sure, has a lot of videos on how to do more effective work outs at home or outside), he just said I need to do the thing I can’t feasibly find the time to do.

It’s not enough.  It’s never, ever, ever enough.

His message: You can’t have cancer and lymphedema and still have a life.

What I say: There has to be a balance.  I can’t do it all and I can’t live for my condition.  What kind of existence is that?

He said that he doesn’t need to see me anymore but I can come back if I ever need anything.  I don’t think I would go back anyway.  I need to surround myself with people who will help me live with lymphedema and the side effects of cancer treatment, not for it.

 


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2 Year Cancerversary

It was two years ago that I walked into a breast surgeon’s office to have a lump in my right breast checked out.  I remember telling myself “It’s just a blocked milk duct.  You just finished breastfeeding.  They’re going to tell you it’s nothing.  You’re going to be fine.”  Your mind tells you one thing.  Your soul tells you the truth and prepares you for what is coming.  I remember the nurse or the resident or whoever she was looking at my sonogram.  Her face didn’t change.  It didn’t budge.  Her pupils did.  I remember them narrowing with knowledge.  “I’m sure it’s just a blocked duct,” she said.  “But I’m going to get the doctor.”

The doctor came in and looked for himself.  He wasn’t quite as adept at hiding what he was seeing.  He was all business.  After a quick look, he told me that he’d like to do 4 biopsies.  One for each lump he saw and two for my lymph nodes.  WHAT?????!!!!!!?????  My lymph nodes?  Why they hell would he want to check those?  The lump is in my breast!  There was so much I was about to learn.

I remember crying hysterically as he did those biopsies.  I couldn’t believe what was happening.  My life was changing and there I was, being punctured over and over again.  Once it was over he asked, “Do you have to be anywhere?  Can you stay for a mammogram?”  He called in a favor downstairs, asking if I could be seen right away, even though it was the end of the day.  He let me know that he’d have the results of some of my biopsies the next day, “just in time to ruin your weekend.”  He asked me to come back and to make sure someone was watching my son.  He then walked me down to get my mammogram.

The next day in his office, he said, “Well, it is cancer” as if we all knew it already and it was no big thing.  But it was a big thing.  It was a huge thing.  That day, my life changed forever.

That was two years ago but it feels like yesterday.  Time has gone so quickly yet so slowly.  It’s hard to explain.

At my one year cancerversary last year, I was still reeling from the trauma I had experiences both mentally and physically.  In my post commemorating the date, I chose to thank all of the people who helped me get through what was the worst year of my life.  I am still grateful to all of those people.

But this year is the year where I have tried to get back to living my life.  I have accomplished so much.  This year, I finished my weekly Herceptin treatments.  They didn’t really cause any side effects but they kept me going to the hospital every three weeks.  It’s hard to move on when you are constantly going to these appointments in the hospital but it kept me close to Nina, my chemo nurse who I always love to see.

Even though my lymphedema progressed into a non-reversible stage, I advocated for the kind of care I wanted.  I left NYU Rusk for physical therapy and found the amazing Cynthia Shechter at Shechtercare who is helping me learn to manage this condition.  It reminded me to trust my instincts and to never settle for sub-par quality of care.

I went back to work full time.  It was exhausting.  I still experience harsh fatigue and my body was still weak.  I also still have some lingering chemo brain.  It’s not horrible but I still forget to do things and can’t remember people’s names.  But I love my work and am glad that I can continue to do what I love to do.

I’ve tried to be a great mother to Oliver.  Many would say I accomplished that.  Being my own worst critic, I can think of a million things I did wrong or about all of the projects I didn’t get to do with him or all the places I wanted to take him, but there was never time.  But, he’s also so bright, funny and caring.  He did so well in his first year in school and grew so much.  I think I should take even just a little bit of credit for that.

This year has also been extremely challenging.  I had my DIEP Flap surgery.  I was warned that it was difficult to recover from but I didn’t quite believe it.  I should have listened.  I’ve never experienced that kind of pain before in my life.  I also underestimated how long it would take for me to recover.  Even though I went back to work after 6 weeks, I still feel like my body is healing.  I’m also still not used to the scars and dissatisfied with the results.  I know that it is a work in progress but, no matter what the plastic surgeon does, I will still be unhappy with the massive scarring on my body.  I just can’t get past it.

Emotionally, moving past cancer has been hard.  The good news is that I don’t cry every day anymore.  Up until about six months ago, I cried every day since my diagnosis.  That’s a lot of crying.  A lot of trauma.  I still think about cancer every day, several times a day but the thoughts and emotions are no longer paralyzing.

Cancer has made me feel stuck in life.  Right before I was diagnosed, I was starting to think about the next steps in my career.  I had to put that on hold, of course.  Now, I have no idea what I want.  I’m trying to work through all of this with a therapist but I’m having trouble moving on.  I’m still mourning and I’m trying to understand what this new normal is.

They say that each year, dealing with the aftermath of cancer gets easier and easier.  That one day, I won’t think about it all the time.  It will be a distant memory.  At two years post diagnosis, I don’t find this to be true.  I have my life and I’m so grateful to be able to do many of the things I love but I’m having trouble moving on.  It’s all still so raw.  I’m still so bitter an angry.  It doesn’t feel good.

I’m going to try to keep busy all day tomorrow.  Hopefully I won’t think too much about the significance of tomorrow’s date.  My hope for myself is that I find as much joy as possible.  Maybe I should do something nice for myself.  Get a mani/pedi or take a long walk and window shop.  I don’t know.  But what I do know is that I need to start turning this frown upside down.  I need more joy.  More life.  Or why did I fight so hard?

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15 Random Facts + WTF!!!????? (a new blog post)

Hello fellow bloggers.  It’s been a lazy summer, at least for blogging.  I haven’t been around much to write or read.  I’m hoping to change that soon.  I’m not working too much but with the work I do have, I’m pretty busy with prep so, by the time I’m done, I still have all of my home stuff and exercise to do.  It’s not leaving room for other things like writing.  But I’m making time now.

I’d like to start with the blogging challenge from Nancy’s Point, one of my favorite breast cancer blogs.  Last year I wrote random facts about myself so I will try to be innovative.  I’m pretty much an open book.  But, here it goes.

  1. I have a dent in my head because of a freak zip lining accident I had in Costa Rica.  The guide forgot to put the brake out for me and I hit a tree.  I needed stitches which I got in a shack in the jungle.  It was the first time I ever tried something adventurous and the last.
  2. My husband and I decided to try to have a baby while folding laundry in a 24 hour laundromat.  I always wanted children when I was young but after grad school, I wasn’t sure.  I’m glad we made the choice to try because 3 months later, I was pregnant with Oliver.
  3. I hoped for a natural birth; no drugs, no IV, with a whirlpool tub and candlelight.  What I got was a completely medicalized birth.  My blood pressure skyrocketed 2 weeks before delivering and my organs started freaking out.  Oliver was 16 days late so I had 5 methods of induction.  The nurses were all over me constantly.  After 23 hours of trying, I finally gave in and got an epidural.  Three hours later, I had a c-section.  Totally not the experience I hoped for.  One of the things that makes me sad is that I’ll never know what it is like to deliver naturally.
  4. I don’t own a home but desperately want to.
  5. I have never lived outside of New York City.  I even went to college here.  If I could move anywhere, I’d love to live in Portland, Oregon.
  6. I hated Lord of the Rings.  The movie.  While beautiful, it bored me to tears.  I think I’m the only one who feels this way.
  7. I love fresh, baked chocolate chip cookies and can eat the whole cookie tray in one sitting.
  8. I’m envious of people who get to travel globally for work and wish I got to travel much more.
  9. I’m like a sponge for other people’s emotions.  If someone is in pain, depressed, excited, I immediately pick up on in and take on that emotion.  I can easily put myself in someone else’s shoes.
  10. I want to be a zombie on The Walking Dead.
  11. If I could have an affair with any star, past or present, it would be Gene Kelly.  I love everything about him.
  12. I get motion sick very easily.  The worst is on boats.  I won’t go on a boat in choppy water.
  13. I’m sickened by the state of the world right now.  I don’t know how humans can treat each other with such disdain and disrespect.  I look at pictures of Syrian, Afghani, Iraqi refugees and I feel so uncontrollably desperate to save them.  I know that is not possible.
  14. When I’m stressed out, I need to cry before I can find a solution.
  15. I can’t dance.  Seriously.  My top half and bottom half won’t coordinate.  But in my mind, I’ve got rhythm and grace.
  16. BONUS:  I love farmer’s markets.  They are my happy place.  I can’t get enough of all the fresh produce.  I think it’s beautiful.

 

Now for some of the stupid, breast cancer related shit I’ve been dealing with.   For the last (almost) 2 years, I’ve heard and read about women complaining about treatment related weight gain, whether it be from chemotherapy or tamoxifen or other drugs.  I’ve considered myself among the lucky.  I managed to lose a little bit of weight during chemo (not much and it was because everything tasted gross) and, even on tamoxifen, I managed to drop one size last summer due to exercise and healthy eating.  After my DIEP Flap reconstruction this year, I decided to be a little lax with my food choices.  That, mixed with not moving around much led to some weight gain.  I knew that was going to happen but I figured I’d deal with it when I recovered.  What I didn’t take into account or realize was that my new medication, Zoladex, could also play a role in weight gain.

When I tried my summer clothes on this spring and realized just how much weight I truly gained, I decided to take  my health very seriously.  I began exercising 4-6 times a week, eating smaller portions and eating more fruits and vegetables.  I figured that, by mid-summer, if I kept this up, I’d be back to my previous weight and down some more.  After 2 months of consistent exercise and healthy eating, I didn’t notice too much change in my body so, I decided to weigh myself again.  Not only had I not lost weight, I had gained 6 pounds.

WTF!!!!!?????!!!!

Let me tell you what upsets me about this.  Aside from my feelings about my physical appearance (which I do not like right now), I’m really pissed about my lack of control.  You see, I hate running.  I hate it!  But it’s all I really have the time and money for.  It’s free and I can be outside.  But I hate doing it.  What I loved about it was that I felt like I was taking control of my health.  When it comes to breast cancer, there is so little we have control over so when I can control something, I feel omnipotent.  So, to find out that I have been working so hard and that it has yielded no results, well, I lost my shit.

As my therapist commented, “it’s a bitch and a half.”  To work at something day after day.  Something that all the books and magazines PROMISE will get you results.  But I am the fucking exception to the rule.  Hard work is not rewarded when you’re on an ovarian suppressor or dealing with other breast cancer treatment.

It never ceases to amaze me.  That no matter how far I get from my diagnosis date, breast cancer still creeps up in my life to remind me who is boss.  It reminds me that life really isn’t in my control.  It reminds me that my body no longer belongs to me.  That no matter how hard I try, it will never be mine again.

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America’s Cancer

I’ve been debating whether or not to write about this here.  This is a breast cancer blog, after all.  But after the two shootings of black men by police officers this week and then the murder of 5 police officers in Dallas, I realize that I can’t remain silent.

For those of you who don’t live in America and might not know what I’m talking about, there were two shootings of black men by police officers this week.  This is not something that is new in our country, unfortunately.  The systematic abuse of power by the police and our justice system has spurred a movement called #BlackLivesMatter, to try to bring about change in the way we treat our community of color.  What made these two shootings unique is that they were both caught on camera.  Well, the shooting of Alton Sterling was caught on camera.  The video of the shooting of Philando Castile begins just after his shooting, but we watch him die.  His girlfriend recorded the whole thing.  Her 4 year old daughter was in the car and witnessed the shooting.  It’s terrible.

In the last three days, I have seen an uproar in this country unlike I have seen in a long time.  We’ve been angry before, like with the murders of Trayvon Martin, Eric Garner and Sandra Bland, to name just a few.  But nothing like this.  Our country is in pain.

Cancer in the body is a big bully, a cell that deviates from normal, healthy cells that do their job and work in harmony, and gang up on those cells and wreak havoc, disrupting and destroying that harmony. The incidents this week have got me thinking about the problems we have in this country.  It made me think of our country’s cancer: racism.  I think, as a whole, there are a lot of amazing and wonderful people in this country.  People who want to live the American dream but in harmony with others and by benefiting others.  Then you have those that are the cancers of our society.  The ones who are power hungry, fearful and bigoted.  They have been overpowering our country and it’s time we’ve ended them and their ideologies, like we do cancer.

By this, I mean we need to restore the peace and love that we are all born with.  Just like most of us are born into healthy working bodies, most of us are born into healthy minds and hearts.  Somewhere along the line, we learn to hate and fear people who are different from us.  We learn to create an “us” versus “them” mentality.  That is our country’s cancer.

In America, it is not safe to be black.  It is definitely not safe to be a black man.  This is not new.  But now we have very clear video to prove it.

“But Carrie, this is a breast cancer blog.  Shouldn’t you be talking about breast cancer and not the murder of black men in America,” you ask?  To that I say, sure.  Let’s talk about breast cancer and race.  According to breastcancer.org, white women are slightly more likely to develop breast cancer.  However, black women are more likely to die from it.  In fact, according to an article published in Time Magazine last year called What Race Has To Do With Breast Cancer, “Among the 102,064 women across a broad range of social, economic and cultural strata from 18 different cancer centers who were diagnosed with breast cancer, African-American, Hispanic, Asian and American Indian women showed 20% to 60% higher rates of diagnosis with stage 2 to stage 4 breast cancers of any type compared to Caucasian women. The risk was highest among African-American women, who had a 40% to 70% greater risk of being diagnosed with stage 4, the most advanced, of any type of breast cancer, compared to white women.”  And while genetics play a factor in this statistic, so do social factors such as income and access to healthcare.  Many have less access to breast cancer screening and are not offered the same level of care.  The article states that while these women might get a mastectomy to remove the tumor, they might not be getting the follow-up treatment such as radiation, like their Caucasian counterparts are getting.

There is a racial divide in our community and our breast cancer community.  More black men and women are dying at the hands of police officers.  More black women are dying at the hands of their breast cancer.  It’s all connected.

What do we do about all of this?  That seems to be the big question going around.  “What do we do?”  Many of us are feeling helpless and desperate.  As a white woman, I come from a place of privilege that I get to sit here and feel that.  I know that.

I’m not sure what to do.  I don’t know what I’m going to do.  I hope that writing about what happened this week for my breast cancer community to read is something.  I hope that it sparks thought and conversation.  I hope that it helps us question our society and advocate for the type of America we all want to be living in.  I hope it means we don’t remain silent.

We are often called “warriors” for fighting our cancer.  Whether we like it or not, that is how we are seen.  Maybe we see that in ourselves.  Maybe not.  But, you’ve got to admit, a breast cancer survivor is a force to be reckoned with.  We have a fight in us.  We have power.  What would happen if we took some of that fight, some of that power, to kill America’s cancer too?

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Photo Courtesy of cnn.com


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15 Things I Didn’t Know About Breast Cancer Before I Got Breast Cancer

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Sometimes I think back at the time I was diagnosed with breast cancer almost two years ago.  I remember the overwhelming feeling of dread.  I remember them talking to me, using technical terms almost on the spot, as if I knew everything they were talking about.  I quickly found out that everything that I knew, or thought I knew about breast cancer was either false, drastically incomplete information, or completely new to me.

If you are newly diagnosed with breast cancer and reading this, you might be in the same place that I was; reeling from the news, inundated with information and juggling what you know or thought you knew about breast cancer with all of the information from you doctor, your friends, family and the internet.  I get it.  I was where you are now.  So, here is a list of all of the things I thought I knew about breast cancer before I got breast cancer.  Please be aware, I have done my best to back up my information with facts from reputable sources such as breastcancer.org.  All opinions are based on my personal experiences with breast cancer.  Nothing here should replace the professional opinion of your medical team.  I’m not a doctor.  I don’t ever want to be a doctor so do not ever take this in place of medical advice.  But if it helps you spark a conversation with your doctor, great!!!

  1. Breast cancer is different from other cancers.  Before breast cancer, I thought all cancers were pretty much the same but in different locations in the body.  I did not understand that all cancers are unique and depending on the type that you have, needs to be treated in different ways.
  2. To that end, every breast cancer is different.  I did not understand that every breast cancer, just like every snowflake and every fingerprint is unique.  All breast cancers start from the cells of healthy tissue and in those cells are genes which tell the cell what to do.  The genes are made up of DNA.  Sometimes, DNA can change or be damaged.  Sometimes there is an outside cause for this and sometimes shit just happens for no reason at all.  Sometimes these changes are harmless.  Sometimes not and when the DNA in the abnormal cells tell that cell to keep reproducing and rapid rates, you have a tumor.  And as they reproduce, they grow more and more different from the healthy tissue and each other.  According to breastcancer.org, “by the time a breast cancer tumor is one centimeter (less than half an inch), the millions of cells that make up the lump are very different from each other. And each cancer has its own genetic identity, or fingerprint, created by the DNA in its cells. So two people with breast cancer who are the same age, height, weight, and ethnicity, and who have similar medical histories, almost surely have two very different cancers.”
  3. To that end, every cancer needs to be treated differently.  Cancer cells and their pathology can be vastly different.  What might work on one type of cancer cell to kill it might not work on another.  That is why we get all these tests on our tumors with reports that are almost impossible to understand.  Options for treatment include, lumpectomy, mastectomy, chemotherapy, radiation, herceptin, hormone therapy and other targeted therapies.
  4. When you get breast cancer, you need to find a breast oncologist.  I remember when I was sitting with my oncologist, Dr. Jevahri one day.  I asked her what other cancers she treated.  She looked at me perplexed and said, “Just breast cancer!  It is my passion!”  It was then that I learned that oncologists have specialties.  This confusion was tied to the lack of knowledge that all cancers are different.  I thought all cancers were the same and an oncologist treated cancer.  But that is not the case at all.  Most specialize in one type of cancer or related cancers.  So, when you are researching oncologists, you need to look into those that specialize in breast cancer.
  5. There might be options for treatments and surgery.  I wasn’t given too many options when it came to my surgery and treatment.  I heard from two doctors that I would need a mastectomy, followed by chemotherapy and then radiation.  But some women are told that they need chemotherapy first and then the mastectomy or lumpectomy.  Some need a lumpectomy and then radiation but no chemotherapy.  It’s worth asking your medical team which one they are recommending and why.  I wish I would have known that women have chemo first and then surgery.  I’m not saying I could have or should have gone that route but it would have been nice to ask why that wasn’t being recommended for me.
  6. It’s normal, and even expected that you will get a second or third opinion.  Cancer is a serious thing.  Everyone knows it.  That’s why it’s expected and even customary to get  a second opinion to confirm diagnosis and to get another opinion about treatment.  Some insurances even require it.  I think it’s good to get a second opinion because it can either confirm what another doctor has recommended (this is what happened for me and it gave me peace of mind) or maybe you will be given an alternative that sounds more appealing or fits your lifestyle better.  I haven’t met a doctor yet that has gotten upset or offended when I said that I wanted a second, third or even fourth opinion.  In fact, I found that I was more respected for doing my research and making informed decisions.  Don’t be afraid to do the same.
  7. I thought chemotherapy would make me sick as a dog and I’d be throwing up every day.  I was deeply afraid of chemotherapy.  I imagined the months I was on it spent in the bathroom over the toilet bowl.  The idea frightened me more than you can imagine.  But that was not what happened to me.  In fact, I never even got nauseous on chemo.  Maybe it was all of the pre-meds that they gave me.  Maybe chemo never would have effected me that way.  I don’t know.  But I also know that if I did get sick, I had a arsenal of anti-nausea medication at my disposal to use at any time.  That was a comfort.  Other people do have adverse reactions like nausea to chemo, I was just one of the lucky ones.
  8. I had no idea just how many clinical trials there were.  One thing I asked about right off the bat were trials I might qualify for.  I am lucky that I was treated in a cancer center that is a center for excellence and actively participates in major clinical trials.  Hopefully, my involvement in two clinical trials will help me in preventing recurrence so I can live a long life see my son grow up.  You can see what trials are happening right now by going to this link.
  9. You don’t need to just know the stage of your cancer but also the grade.  When we are diagnosed, we immediately want to know what stage we have.  The stage gives us a lot of information, mostly if the cancer is treatable or terminal.  Important stuff.  But also important is the grade.  The grade tells us how different the cancer cells are from the normal healthy breast cells.  It also tells us how quickly they grow.  Your grade also effects your treatment plan.
  10. Once you are diagnosed, decisions are made quickly about your care.  I was floored by how quickly things moved once I was diagnosed.  Maybe it’s because I’m young.  Maybe it’s because my tumor was aggressive.  I don’t know.  But decisions about my care were made super quickly and this was extremely overwhelming.  Be prepared for this to happen.
  11. Chemo can affect your ability to have children in the future.  Chemo kills cells, both healthy and unhealthy ones.  It also has adverse affects on your eggs and ovaries.  I was told by my oncologist that chemo would age my ovaries by 10 years!  Yikes!!!!! It could also (and did) put me in menopause.  I was advised to harvest my eggs if I thought I might want more children.  I did.  Livestrong was instrumental in helping with this financially.
  12. I thought all stages of cancer could be a death sentence.  While cancer at any stage can come back, stage 1, 2 or 3 breast cancer is not considered terminal.  I was told my cancer at stage 2 was curable.
  13. I didn’t know that breast cancer can come back after treatment.  Even though my cancer was not considered terminal, I learned that it stays in the blood stream and can come back at any time in my major organs: lungs, liver, brain or bones.  If it did, I would be at stage 4.  Luckily this hasn’t happened but I am always afraid.
  14. I did not realize that cancer would be a lifelong journey.  I was told at diagnosis that I would have a bad year.  But when that year was over, my hair would grow back, my energy would be back and life would be back to normal.  I have found this to be the biggest lie that they tell you.  While it’s true that your year following diagnosis is extremely challenging, I have found that survivorship is equally, if not more difficult to navigate.  Throughout treatment, I mostly had a positive outlook and used my power of sarcasm to embolden me and get me through the hard stuff.  When major treatment is over, it feels like we are expected to simply go back to normal life.  But nothing is normal anymore and we have been through a major trauma.  I’m in therapy now to deal with the aftermath of cancer.  It is one of the hardest things I have had to do in my life but I am working on it.
  15. There is no right way to do breast cancer.  When you get cancer, the message we get is that we have to be positive and we have to fight.  We hear stories all the time about cancer survivors whose positivity helped them heal and heal others.  We hear stories about those who, because of their cancer became a better person or learned something new.  We hear about survivors who create bucket lists and begin a mission to complete them all.  This is not true for everyone, though.  Some people go through cancer angry and bitter about the card they have been dealt.  Some can’t find a positive side to the situation.  Some never feel like they have reached some epiphany about why this happened to them or that it happened so that they can go on to do great things.  I think the argument as to whether cancer is a gift or not creates one of the biggest divides in our community.  It’s something we all take very personally, no matter which side we are on or how we feel about our cancer.  But here’s the thing.  You do you!  However you feel is the way you should feel.  If you feel like cancer has made you a better person, that’s wonderful!!!  If you feel like you were just fine before cancer and it has set you back both professionally and personally, that’s fine too.  They are both valid points of view.  So just feel how you feel and do whatever you need to do and say whatever you need to say and feel however you need to feel to get through the shitstorm that is breast cancer.

What are some things you didn’t know about breast cancer before you got breast cancer?  What would you add to this list?

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