My Little Bs Have the Big C

A Breast Cancer Blog For Young Women


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Life After Breast Cancer: The Other Side Of Pink

 

This post was written for an organization that I am a part of, 5 Under 40.  5 Under 40 helps breast cancer survivors and those with the BRCA mutation age 40 and under with beauty and wellness services.  In addition, they host support groups and meet ups.  They have helped me in so many ways so when they asked if I could write something for them, I jumped at the opportunity.  I want to thank 5 Under 40 for all of their support and for giving me a voice in their community.  Please check them out at 5under40.org and if you are in the NY/Tri-state area and would like to be connected to 5 Under 40, please let me know

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            I know what I was told.  I was told that it was going to be a hard year; a mastectomy, chemotherapy and radiation.   I was told that I was going to lose my hair but it would come back and while it did, I’d get to wear cute hairstyles.  I was told that I’d lose some energy and might feel sick but once it was done, I’d return back to normal.  Normal.  That’s a word that I heard a lot referring to what would happen when I finished treatment.  I found “normal” to be far from the truth.

I was diagnosed with stage 2B breast cancer in my right breast and lymph nodes at age 37.  My son was 19 months old and we had just weaned from breastfeeding.  I was working full time as a teaching artist, my passion, and beginning to consider ways I might advance in my career.  Secretly, I was also beginning to think about what life might be like with another child.  Originally I had said, “one and done,” but, as Mother Nature tends to do so well, I forgot about the lack of sleep, the spit-up and the aching raw nipples.  I remembered the cuddles, the first giggles…the first everything.  But when you are diagnosed with cancer, many of your plans for the future get put on hold or changed forever.

I endured my treatment like a trooper.  I made jokes, smiled (and cried and threw a few temper tantrums) through the tough days and created a mantra to get me through the hellish days, “a blip in time,” to remind myself that all pain and discomfort would pass.  Through my six months of chemotherapy and 15 sessions of radiation, I checked each treatment off my calendar until the end, when my life would go back to normal.  I looked forward to spending long days with my son without feeling completely warn out.  I was excited to work and not be afraid that my chemobrain would completely derail or ruin me professionally.  I wanted to hang out with my friends, drink wine, eat sushi…hell, I just wanted to be able to taste my food again!!!!!!  I was excited to not spend time every week at the cancer center and to get back some time for myself.  I was ready to look normal again, to not look like a cancer patient and to get my body back.

When you are going through cancer treatment, you are surrounded with support; support from your medical team, family, friends and, if you are lucky like me, colleagues and bosses.  But, when treatment ends, a lot of that support goes away.  At one point you are seeing your oncologist every 2 or 3 weeks and suddenly, it’s every three months.  Of course you can call whenever you need something but, in their eyes, they have done their job.  Now your job is to get back to living life.

Or now that your hair has grown back, your colleagues figure that the worst is over and that you are feeling better and can return to work as you did before.  What they don’t know is that cancer related fatigue can last for years.

The offers for home cooked meals, laundry help, childcare also start to dissipate.  When treatment ends, so does a lot of the help that came with it.

It wasn’t long after treatment ended that I realized returning back to my normal life was unrealistic.  I no longer looked like myself, even with my hair growing back.  I developed major body image issues (remember sixth grade people?) because of treatment related weight gain and the whole one boob thing.  I looked in the mirror and didn’t recognize the woman staring back at me.  This was disconcerting.

I didn’t feel like myself.  I remember one-month post chemo, I tried to take a bike ride for exercise.  My husband encouraged me to go for a long ride.  I almost didn’t make it home.  My body was no longer capable of doing what it had done just six months prior.  This included exercise or for daily endurance which was for things like raising my son, grocery shopping, scrubbing the bathroom…whatever.

I can go on and on about why life wasn’t normal.  But I think the hardest thing for me after cancer was dealing with the trauma of what had happened to me.  I fought so hard for so long and suddenly, it was over.  I didn’t know what to do next.  I didn’t know what was supposed to come next.  I kept thinking I would feel the same, think the same and look the same as I did before cancer.  None of those things happened.  Instead, I felt like I was living in a body that wasn’t my own and having thoughts and feelings that were different than what was normal for me.

Depression post-cancer is very common and it was happening to me.  I was afraid every day about recurrence.  I was afraid every day that I couldn’t live up to everyone’s expectations of me or the expectations I had for myself.  And managing post-treatment side effects like lymphedema and fatigue were more difficult than I anticipated.

I don’t write all of this to scare people.  I write about it because it is the truth for many of us.  I think what is hard is that breast cancer is depicted as this “happy” cancer or “party” cancer.  I mean, what other cancer is celebrated with pink feather boas and t-shirts that read, “fight like a girl” or “breast cancer warrior?”  We see images all of the time bald women surrounded by their friends, covered head to toe in pink and smiling and cheering.   We hear stories about women who say that cancer was a gift and has changed them for the better.  We see these images and hear these stories but that is not everyone’s reality.

Some people hate the color pink (who me?) and don’t feel empowered by pink glitter and cosmopolitans.  Some of us don’t like to walk with Komen with every girlfriend we’ve met since Kindergarten.  And some of us think cancer was a curse and feel that it didn’t change us for the better.  Some of us are angry about what happened to us.  Some of us, instead of not sweating the small stuff (we aren’t supposed to sweat the small stuff anymore, we’ve been through worse) feel that each wound, no matter how small, cuts more deeply.  And some of us, after cancer, have a hard time.

This is not true for everyone.  I have met so many people who have gone back to living their lives and living them well soon after treatment was done.  We read about these stories in the papers and the breast cancer websites and blogs all the time. Many of the stories we hear are the ones where there is a happily ever after.  But, if you are not living happily ever after, after having cancer…you are not alone.

Here’s what I will say.  I am two years post diagnosis.  As of just two months ago, I stopped crying every day.  I still think about cancer every day but I’m not crying.  That’s a big step.  I am also finally starting to think about my future and with the help of a therapist, I am defining my new normal.  It’s hard work to redefine yourself but I’m finding the effort worth it.

Life after cancer might not be what you expect. Know that whatever you are feeling, thousands of others feel the same way.  Know that there’s no right or wrong way to do cancer or to feel after breast cancer.  Also know that there is help for you if what you feel isn’t like a “warrior” but like you have been defeated.

You are not alone.

You are not alone.

 

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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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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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Hello! It’s Me!

Never, ever underestimate the power if a good haircut.  It has all sorts of healing powers.  When I had my real hair, I loved getting my hair done.  I always felt fresh and put together afterward.

Since finishing chemo and having my hair grow back, I’ve been getting short pixie cuts.  While I have enjoyed the pampering, a haircut was really about maintaining the wild and crazy hair that was growing.  It was hair that I did not recognize.  Curly, thick, coarse, dry.  It wasn’t mine and it had a mind of it’s own.  And even though I liked the cuts and styles I received, they just didn’t feel like me.

Yesterday’s haircut was completely different.  For the first time in a year and a half I feel like myself!  I look like myself!  As my stylist was cutting my hair, I felt like the statue under the marble that was being chiseled back to life.  But instead of a statue, it was me.  The me I remember.  As he finished his last snip here and there, I started to cry.  He asked why.  “Because, it’s me!!!  I look like myself!!!!  I see me!!!!!”  He took that as the compliment I meant it to be.

My hair isn’t quite as long as it used to be, although it never was very long, it’s getting pretty close.  And it’s long enough to have the short bob style that I loved.

So, ladies and gentlemen, children of all ages, I’d like to present…..ME!!!!!!!  I’m back!!!!!

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I love this 20s bob!

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Look at how cute it is from the back!

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What Defines Me

I was riding in my car this morning, listening to WNYC, and a commercial for Memorial Sloan Kettering Cancer Center came on.  It was talking about survivorship.  I can’t remember the exact words of the commercial suddenly (chemo brain!) but it was something like, “After cancer, people call you a survivor.  But after cancer, at Memorial Sloan Kettering, we want you to do more than survive.  We want you to live.”  On the Staten Island Expressway, 10 minutes from the school I would be teaching in, I started to cry.

Recently, I have been thinking about my life post cancer.  It’s been a year since I’ve finished major treatment and although my trips to the cancer center are less frequent, I still feel like it’s a major part of my life.  I remember after being diagnosed that I was told that I would have “a bad year.”  I don’t know if I was told the next part or if it was something I assumed but, I thought my doctors told me that after the bad year, my life would go back to normal.  My hair would grow back and look super cute with short styles.  My energy would be back.  I’d feel good and I’d be cancer free.

What a load of bullshit!

While the side effects of past and current treatments are awful, it is the emotional toll of the experience that is now hard to live with.  When I started this blog, I wrote in my “About Me” page that I wouldn’t let cancer define me.  I meant it, too.  Just two weeks into my diagnosis, I’d bought into the idea that cancer was not permanent and that while it sucked in the present, it was something to be overcome.  And when I did kick cancer’s ass, I could continue with life as usual.  Cancer was like a “Breaking News” interruption of my favorite program; it was annoying and I wanted to get back to my regularly scheduled programming (my regular life) but I had to get through the necessary detour.  That is what I was promised.  That is what was sold to me.  So when I said that I would not let cancer define me, I meant it.

Oh, naive, Carrie!!!!!  If you only knew then what you know now.  If you only understood the damage cancer treatment can do.  If you only understood what was in store.

Cancer completely defines me.  I think about it all the time; with every hot flash, every time I see my scars, every swollen sensation in my ugly ass lymphedema arm, every time I see the new curly, dry hair (previously wavy and shiny) that I can’t control, every time I put on mascara (I never needed it before), every time I eat (is what I’m eating a good choice?  Will it stop my cancer from coming back?  Is it feeding my cancer?), every time I work out and my body feels like hell, every back pain, every disappointing moment and even in every moment of joy.  Cancer is always there.

Cancer is a part of almost every conversation I have.  No matter the topic, it always comes up.  I think to myself as I talk to people, “Just don’t mention it!!!  No one wants to hear about it!  They’re all sick of it.  Stop talking about it!  Stop! Stop!  Shut the fuck up!!!!!!”  But I can’t help myself.  Everything for me comes back to cancer.

It is who I am.  It is so much of what defines me, I often don’t remember the person I was before.  This leaves me with the particular conundrum of having to redefine my life.  I’m suddenly in the position where what I thought I wanted, I either don’t want anymore, am not sure if I want anymore or if I can make it work in my post cancer life.  The things that brought me joy before cancer don’t bring the same amount of contentment.  I feel like I should now do great things with this second chance I have been given but, what is this new goal that I must surmount?  What must I achieve to make my life meaningful again?

I believe that in our lives, experiences can change us and make us analyze our current lifestyle and goals.  We should redefine ourselves.  We should always be growing.  But when the impetus for change is something so violent, invasive, and permanent…that redefining can be overwhelming.

I’m trying to get to know myself again.  I want to know who I am and what I will become.  But right now, the old me is holding the new me back.  She doesn’t want to let go.  She doesn’t want the cancer, or, more accurately, the experience of cancer, to win.  But it’s who I am now.  It’s everywhere!  Even in my morning commute.

 


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Scanxiety

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Tomorrow I’m having my first MRI since being diagnosed a year and a half ago.  I was supposed to get one about six months ago but, that didn’t go so well.  I got there, undressed, took off all my jewelry, sat down in the big, cushioned, slippery faux leather hospital chair, they found a vein and injected the needle for the MRI contrast stuff.  They asked me a bunch of questions and then gave me a look over to make sure I didn’t have any metal on.  That’s when they noticed my tissue expander.

“What is that,” asked the nurse, concerned?

“That’s my tissue expander,” I said.

“You still have that,” she asked?

“Well, does it say anywhere in my chart that it has been removed?”

“I didn’t look.  I just assumed it was out by now,” she said.  “I’m so glad I checked.  Expanders have a metal piece in it.  That would have been bad.  You can’t get an MRI until that is out.”

“WHAT THE FUCK,” I screamed!!!!!!!!

It was a really big, WTF moment.  How could that have been missed?  I had been psyching myself up for a whole week for that moment and even got injected (and they hit a nerve so it was ouchy) and suddenly, I couldn’t get it!!!???!!!  I was not a happy camper.  It’s not that I was looking forward to an MRI.  Who is?  But I wanted the all clear.  I wanted to know that my months of chemotherapy and radiation had paid off.  At least, that was what I was hoping for.  But it was declared that I would have to wait until my expander came out.

3 1/2 months ago, that’s exactly what happened.  I got my reconstruction and my expander removed.  Two weeks ago, my surgeon ordered an MRI, this time remembering that anything that could have me recreating Alien, was out of my body.

So, here I am, trying to psych myself up again and I’m just as nervous as I was the last time.  I’m not scared of being in the little tube.  While I’m not excited by the noise, I know I can take it.  But my first MRI was scary and I’m terrified as to what could be seen this time around.

I also remember my first MRI like it was yesterday.  It was just a couple of weeks after I was  diagnosed, and maybe days (or a week) after I found my current breast surgeon.  I was booked for a back to back MRI and PET Scan.  Once my MRI was finished, I was sent out to the waiting room because the PET Scan machines were running late.  After an hour, I was ushered into the whole PET Scan process.  After 2 hours, I was released to my mother who was waiting for me in the waiting room with a sandwich (you can’t eat before a PET Scan and by that time it was late afternoon and I was dying of starvation).  The other thing that was waiting for me was several phone messages.

One phone message was from a nurse at the MRI station.  “We have the results of your MRI.  Can you please call us back at your earliest convenience?”

The other phone message was from my breast surgeon’s secretary. “Hi, we’d like to book your next appointment a few days earlier.  Call us back to let us know if you can switch your appointment.”

I almost threw up.  Why did I have all of these urgent messages on my phone?  Why were my results back so quickly?  Why did my surgeon want to book me as soon as possible?

Since I just got out of my scans, I went to the front desk and let them know that I got a message to call them.  “But I’m here so if someone can just come out to talk to me, that would be great.”

“I think you need to call them,” the secretary said.

“Look!!!!!  I just got out of both the MRI and PET Scan and got a message that my MRI results are back.  Why can’t someone just come out and talk to me right now?  I’m right here!!!!”

She realized that made sense and called the nurse.  I went to sit down next to my mother, looked her in the eyes and said to her, “You need to prepare yourself.  This is the moment we find out that I’m going to die.”

My mom looked stunned.  He eyes widened and face stiffened.  How can you hear something like this from your child?  “You don’t know that.  It could be anything.  It could be that they just got the results quickly and want to let you know so you don’t worry.”

“Why would Dr. Guth want to see me so quickly?  Something’s wrong.  It’s all over my body.  They’re going to tell me now that I’m going to die.  This is the moment I find out I’m going to die.  You better prepare yourself.”

I was convinced of this.  There was no other explanation.  No other possibility.  My fate had been set.

A nurse came out.  She sat next to me.  I felt the blood leave my face.  I felt still, unable to move.  I breathed so slowly.  She read the results.

“We could see the tumors in the right breast.” She talked about things we already knew about the tumors and how this scan confirmed what we already knew.  “But here’s the thing, we don’t see anything in the left breast.  I know that your mammogram came back inconclusive for the left, showing a possibility of some tumorous clusters but nothing is showing up here.  That’s odd.  We don’t think that there’s anything there.”

It turns out, she was right.  A failed attempt at a stereotactic biopsy a week later with 6 mammograms to try to find these elusive tumors that my first mammogram had spotted turned out clear.  There was no cancer in the left breast.  Just lots and lots of calcifications.

An hour after I left the hospital that day, I got a call from my breast surgeon.  She wanted to let me know that my PET Scan came up clear and that she was happy with my MRI results.  I asked her why she wanted to see me earlier then.  What was wrong?  It turned out that she just had a cancellation and wanted to get me in as soon as possible so that we could make plans based on that day’s results.

It’s crazy.  In one hour I thought for sure I was getting my death sentence and then found out that I was going to live.

Tomorrow, who knows what the results are going to be.  I hope that all of my sacrifice, all of my pain and suffering and fighting have been worth it.  But, as many of us know, it is not a guarantee.  I could have done it all just for the cancer to find a new home in my liver, my bones, my brain, my other breast.  Nothing is for certain.  Nothing is in my control.  I know this.  The MRI machine knows this.  It just tells the truth of what is brewing beneath the skin.

What is my truth?  Is tomorrow the day I find out I’m going to die or that, at least for now, I get to live with no evidence of cancer?

**Update.  My MRI came back clear.  So as of right now, I’m NED or cancer free, or whatever.  There’s no visible cancer!  I couldn’t be happier.  Thank you for the love and support!!!


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Zoladex Was Supposed To Be A Pain In The Ass (Plus Another Anniversary)

needle

I have to admit, I’ve been planning the title of this post for several weeks, ever since I last saw my oncologist we decided to get me started on Zoladex.  The title was supposed to be, Zoladex Is A Pain In The Ass, but it can’t be anymore.  I’ll explain why.

Zoladex is a drug administered by monthly injection and in combination with Tamoxifen in premenopausal women, lowers the risk of recurrence when diagnosed with early stage, hormone positive breast cancer.  It is an ovarian suppressor so it stop the ovaries (or lowers) production of estrogen.  This will put me in complete menopause.

My oncologist has been bringing up this drug to me for over six months now and I have been very resistant.  “Why,” I asked on many occasions,”do I need to do something else?  Why do I need to put another drug in my body?  Haven’t I done enough?”  It was really that last question I was asking.  “Haven’t I done enough?”  Why isn’t a mastectomy, chemotherapy, herceptin, radiation and tamoxifen enough to keep my cancer at bay?

The answer she gave me is that Zoladex is one more thing that can help prevent recurrence.  While it doesn’t improve my chances a huge amount, my oncologist feels that the benefit it is statistically significant in women who were diagnosed under the age of 35 (I was 37 so, close enough) when in combination with all of the treatment I have had.  It took a long time for me to come to the conclusion to try it but I promised my son that I would do everything…EVERYTHING…to make sure this cancer never happens again.  So, I need to at least try it.

I had heard that there is a “technique” for administering the injection so I was very curious about that, so I asked my oncologist.  Her reply was, “How graphic do you want me to get?  Are you sure you want to know?”  I felt the blood leave my head but I said that I’m not good with surprises and that I’d rather know than be caught off guard.  So she informed me.

WARNING:  If you do not want to know how this is done, stop reading now.  I acknowledge that this information is not helpful for all.

“Well, it’s a big needle.  A really big needle.  Whatever you do, don’t look at it.  Because it’s a big needle, after sticking it in the skin it needs to be twisted.  Then we inject the liquid which is more vicious that others.  It is going to hurt but only going in.  And when it’s done, it’s done.  That’s it.  And we inject it into your backside.”

My ass!!!!  MY ASS!!!!  They wanted to stick a huge needle into my ass?

Hence, the title I’ve been planning for weeks.  Zoladex Is A Pain In The Ass.

But, yesterday, when I got the injection, I was informed I was going to get it in my belly and not my bum.  “Are you sure,” I asked my nurse?  She was positive.  I was simultaneously elated and disappointed; elated because I got to keep my pants up and avoid the humiliation of getting a shot in the ass but, disappointed because what was the title of this post going to be?

I informed my nurse, Nina my chemo nurse, of course, that I didn’t want to see the needle.  She agreed it was not a good idea.  But let me tell you what I did see.  The box!!!!  I saw the box the needle came in.

I am of the belief that anything that is going to enter your body in any way while you are still conscious should not come in a box that size.  I started to sweat.  I wasn’t sure I could do it.  But amazing Nina kept me talking (probably so I wouldn’t faint), sprayed some numbing solution on my skin and did it.

It didn’t hurt.  Maybe a slight pinch but that’s nothing.  And it was done in seconds.  In fact, it hurt more after (a little soreness) than actually getting the injection.  It was done.  Now I just have to see if I get any side effects…more hot flashes, night sweats, that sort of thing.

I had been psyching myself out for weeks over this injection.  In my mind, the needle looked something like this.

needle 2

Or worse, this one.

needle 3

My imagination really got the best of me.  I’m still happy that I was prepared for what was coming.  If I had seen that box and didn’t know what was in store, I think I would have flipped out.

It’s also ironic that I started this new treatment on the anniversary of my last chemo treatment.  I can’t believe that one year ago, I said goodbye to chemotherapy (hopefully) forever!  What’s amazing to me is how quickly this year has gone by.  From the time I was diagnosed and throughout treatment, it felt like the world stopped turning and I was stuck in time.  And since then the world has been spinning uncontrollably forward.  This is good in the sense that I have been getting back to normal life, to the best of my ability.  But it’s also had me scrambling to catch up.  More on that in another post.

But today, I want to celebrate how far I’ve come.  Even though I’m starting a new treatment and I don’t know what the side effects will be like, I have to remain hopeful.  I have to trust that it’s one more thing keeping me safe.  It’s one more thing ensuring that I see my son graduate college, get married and have his own children.  And for that, you can stick any size needle into me whenever you want (not really but yes really).

Enjoy some images taken one year ago.  And you can read about my last chemo day and how I celebrated here and here.

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