Oh, Snap!

There is a sound.  It’s not quite a sonic boom but it’s fast and forceful.  The camera cuts to birds flying out of the trees, fleeing from the danger that the sound must bring.  The camera cuts to me, standing in shock.  As the camera pans to a closeup of my face, you can see tears welling up in my eyes slowing, promising an overflow within moments.  As dramatic music begins to swell in the background, I breathe in suddenly, as if I’d been holding my breath for hours.  Suddenly, a single tear escapes my eye, my face relaxes and the audience realizes that this is a moment of relief.  A release.  That all is well again.

This has been one of my many fantasies that I’ve had about my cords, or axillary web syndrome, breaking or snapping.  I have suffered from persistent and stubborn cording for almost three years now.  And I do mean “suffered.”  While I have had excellent range of motion, the cords have been extremely painful.  Especially my armpit.  Every time I lifted my arm, it was a tight, stretching pain.  I could feel the pull go deep into my chest wall beneath my once upon a time breast and into my scar tissue, down my arm and into my hand and fingers.  Does that make your skin crawl?  Well, it’s not pleasant.  But it was my normal.  I actually got used to being in discomfort.

For those of you who don’t know what cording is, it can occur resulting from a sentinel node biopsy or axillary lymph node dissection during a mastectomy.  One can develop rope or string like structures in your arm.  This can inhibit range of motion and be quite painful.  It is usually diagnosed by a physical therapist or lymphedema therapist (it is separate from lymphedema but can sometimes go hand it hand).  It is posited that most cases for cording resolve within a few weeks to a few months with stretches and therapy.  Read more about axillary web syndrome here.

But I stretched.  I stretched every day.  I went to therapy once or twice a week.  We pulled the cord.  We massaged the cord.  We dug into the cord.  We sang to the cord.  We breathed deeply into the cord.  And we definitely begged the cord.   And each time, nothing.  It would not move.  It was intent on staying exactly where it was.

Then, last week, I was laying on my couch watching tv and I was stretching my arm and with my left hand, stretching the cord as my OT does at her office.  I do this a lot in hopes that it will do something.  It never does.  But last week, out of nowhere I felt the most gentle pop.  It wasn’t even a pop.  It was an effervescence.  And suddenly, in the area where I was experiencing the most pain, the pain was gone.  There was some soreness where the cord had been but the rope like structure in my arm had suddenly disappeared.

Had I done it?  Had I achieved the impossible?  I went to be in disbelief, thinking I might have given it a good stretch.  But when I woke up, it was still gone.  I did it.  “I got you,  you fucker!!!!!!”

I had won the battle but not the war.  There were still more cords.  I still stretched every day.  One day I felt a pop in my wrist by my thumb.  I could always feel several cords there.  The pop felt like when I crack my knuckles (which I sometimes do with my wrist but near my pinky, never my thumb).  When I went to feel the cord, it was gone.  GONE!!!!!!

Then the other day, I was stretching again, and there was a thin cord.  Thin but mighty.  It caused a sharp pain every time I touched it.  But I was used to that pain.  I pulled it.  I tugged it, I dug under it and pulled it up.  Nothing.

But when I woke up in the morning, it was gone.  GONE!!!!!  Another one bites the dust!

I always imagined that when these cords went away, that there would be tears of relief.  But, the snap was so subtle and undramatic, that I didn’t know what to make of it.  With the last cord, I just continued putting cream cheese on my son’s bagel as if it were a normal morning.

I know that there are still more cords that I need to snap.  I can feel them and they are deep in my arm.  Really deep.  But I don’t feel hopeless anymore.  I know that I will get them one day.  My cords might be stubborn but so am I.

 

Did you have cording?

How long did it take for your cords to snap, if they did at all?

Do you have any magic tricks to make them disappear?

A photo taken of one of my cords. Please excuse my hairy armpits, lol! It was winter and I couldn’t be bothered.

The Droopy Boob

“Droopy boob.”  This is not the title of my new book, my rock band or my porn name.  It is what was described to me this week about my remaining original breast.  The good breast.  The one not sliced off and then fried.  The one with the nipple.  The one that still has feeling and sensation.  The one that, while imperfect, is perfect to me because it’s mine.

When I first started seeing my plastic surgeon two years ago, I remember that after my mastectomy and we starting talking reconstruction, he mentioned that he would like to do a lift on my left breast to make it symmetrical.  He said that my breast was, “a little droopy,” to which I responded, “well, that’s because it’s sad because it misses his friend.” Funny, right?  I thought so.  He didn’t get it.  Or doesn’t have a great sense of humor.  Or both.  I never thought more about it.  The DIEP Flap was such a big surgery I told him that I didn’t want him to touch any other part of my body.  Slicing me in half was quite enough, thank you!

Before breast cancer, I liked my breasts.  They weren’t too big and while they weren’t quite as high as they were when I was 18 (I had just finished breast feeding for 17 months, after all), I thought they still looked pretty good.  It never occurred to me to do anything to my breasts to enhance them in any way.

This past week, almost a year after my DEIP Flap, I went back to my plastic surgeon to discuss a follow-up surgery to make my right breast, the one that was chopped off and reconstructed, look more like, well, a breast!  Because isn’t that the point?  My surgeon did a great job of matching the size and the symmetry is pretty good.  But the top of the breast is flat.  I described it to him as a blown up pancake.  There’s no cone shape.  I want that changed.

He’s not sure that he can get it exactly like that but he suggested that if I want more symmetry, that I do a lift on the other breast because, “it’s a little bit droopy.”  He called my breast droopy again!!!!!!!  For real!

Now, when I think of a droopy breast, I think back to when I was 9 years old and my mom sent me to a babysitter after school.  She was a mom with three children.  She was overweight and had large breasts.  I remember (I’ll never, ever forget this), one day I was at her house after school.  She was in the kitchen cleaning.  I asked her something and when she turned around, I could see her nipples hanging out from the bottom of her shirt. I remember being completely shocked.  I had NO IDEA boobs could do that!!!!!  I remember thinking, “how are her breasts at the bottom of her shirt?”  It didn’t make sense to me!  So, when I hear the term, “droopy boobs,” that’s exactly what I think of.

In comparison to my babysitter, my left breast is alert and perky.  It’s still in the chest area and that’s pretty good.  But according to my plastic surgeon, if I want true symmetry, I’ll have to do some work on the good breast.  He said he could try to get some droop on the right one but “why would I want to do that?”  Really?????

I asked what the lift would entail.  He said he’d have to cut a crescent above the nipple and would do a lift from there.  Another scar.  In a very noticeable place.  I forgot to ask but it seems that if he made this surgical cut, I’d lose some sensation in the nipple.

I want nothing more than to look like myself again.  I thought that was the whole point of reconstruction.  But as I go on and move closer to the end of this cancer experience, I’m reminded that, once again, I’ll never be like I was.  My rebuilt breast will never look like the original.  It’s a fraud.  And now it’s likely that one nipple will be pointing straight while the other a little more south.  I’ll be like a Picasso.

I know that my surgeon kept mentioning this because he is a perfectionist.  As well he should be.  I get it.  But my body is not my own anymore.  I still look in the mirror and don’t recognize the reflection.  I think that another major scar would break me.  What would it be for, really?  Symmetry when naked?  What if I still can’t look at myself without being disgusted?  Then what’s the point of that symmetry?  What’s the point if it’s at the expense of my peace of mind and my self worth?

I am taking into consideration everything he said but my gut is telling me to keep the cutting to a minimum.  I have been through enough.  I have done enough.  It will have to be enough.

My next surgery is scheduled for February 16.  It will be much easier that my DIEP Flap.  He said that there’s even a possibility that I won’t have to be put under general anesthesia.  That would be great.  And barring any complications, I’ll be ready to go back to work in a week.

How many reconstruction surgeries did you have?

Did you have a lift on your breast to match the reconstructed breast?  Are you happy you did it?  Do you regret it?

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.

 

Two Year Mastectaversary

It’s hard to believe that two years ago, at this moment, doctors were standing over me and saving my life by amputating my breast.  I still remember the fear I felt that morning like it was yesterday.  It might as well have been yesterday.  But it’s been two whole years and it’s hard to wrap my brain around that.

Even though it’s been two years and I have had my initial DIEP Flap reconstruction, I still have more “tweaking” surgeries to go.  I want my plastic surgeon to fix the shape of my breast.  The symmetry is good and I even think the size but it’s still round and flat instead of cone shaped.  I also have to have nipple put on and I’m trying to decide if I want a realistic nipple tattoo or something a little more artsy and decorative.

While this style isn’t mine, the shape and size are nice.

I would never get this but I think it’s so freakin’ cool.

Doesn’t this look real? I would look like myself again.

So, the journey (I know some of you hate that word, I’m ok with it) is not over.  Far from it.  But look how far I’ve come?

Here is my mastectomy story.

This is why I chose a single over a double mastectomy.

A hospital packing list for your mastectomy.

How long did it take for you to finish all of your reconstruction surgeries?

Did you opt to go for a natural tattoo of the aureola or for something artsy and decorative?  How did you make that decision.

 

 

Scanxiety

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!!!

Lymphedema and How It Has Changed My Life

It’s the side effect that’s barely mentioned.  A whisper in passing by the surgeon and radiation oncologist.  Spoken nonchalantly as if not talking about it means it won’t happen.  But many of us know that this is not the case.

Today it was announced that the U.S. Senate unanimously voted that March 6th will be World Lymphedema Day.  This landmark decision is the first step in bringing awareness to this awful condition.  I wanted to use this opportunity to not only tell you all about lymphedema but how it has impacted my life.

Lymphedema can happen to anyone who has lymph nodes removed during their mastectomy, a sentinel lymph node biopsy or radiation to the area.  I’m not even talking about those who are born with or develop the condition as part of a hereditary trait or those who get it as a result of another bodily trauma.

Lymphedema is the swelling of an extremity that occurs when lymph fluid is trapped and can not flow properly.  I got lymphedema in my right arm and hand about six months after my mastectomy with axillary lymph node dissection.

I asked my surgeon about lymphedema, concerned about the risks.  “Do you see anyone in the waiting room with a sleeve?  It’s extremely uncommon.”  She then handed me a pamphlet about lymphedema prevention and sent me on my merry way.

Let me say, I love my breast surgeon.  What she does, she does brilliantly.  She’s warm and caring and when it came to my cancer and mastectomy, she was knowledgeable and giving.  Her job was to get the cancer out of my body and she did that.  What she had to do to my body is not pretty, but that doesn’t matter.  Her job was to save my life and she did that.  But that’s not where the story ends for many of us, is it?

Getting lymphedema has been traumatizing in many ways, more so than the cancer itself. Cancer was something to be beaten or overcome.  With my cancer I could have a mastectomy, chemotherapy, radiation, herceptin and tamoxifen to help make sure it never comes back again (although even all of this is not a guarantee).  Lymphedema is for life.  It’s something I am going to have to manage.  At this time, there is no cure.

I’ll repeat that in all caps.

THERE IS NO CURE!!!!!!!

Knowing I had done everything I needed to do to save my life and many of these life saving measures have caused me to have a painful condition that I will have to live with for the rest of my life has been unbearable.  When it was first happening, I fell into a depression and cried all the time.

I couldn’t imagine how I was going to live my life with a limb that unpredictably swelled when I lifted my child, ate a salty meal or the weather went above 80 degrees.  I was afraid all of the time; afraid when I tried to imagine what my future might look like.  It was hard to imagine my future at all.

I felt ugly.  Like a teenager who’s uncomfortable in her developing body I began to hide my hand.  I’d fidget with my clothes so that they’d hide my swollen hand or how one sleeve was tighter on my arm than the other.  And feeling even more ugly than I already did after my mastectomy was a major blow to my self worth.  Sometimes, I wondered if life with lymphedema was worth living.  I never contemplated suicide or anything like that and I didn’t want to die.  But I wasn’t sure I wanted to live, either.

I kept a lot of these feelings to myself.  My husband, who knows how hard this has been on me doesn’t even know I was having these thoughts.  He’s going to flip the fuck out when he read this. (Don’t flip out, honey.  I’m ok, I promise.)

But that’s the problem with lymphedema.  Many people don’t know about it, not even doctors.  They don’t know how to talk to us about it and they don’t know how to help us prevent it from happening, although, sometimes it is unpreventable.  They also don’t know how to support us when and if it happens.  Like many medical conditions, we don’t need to simply treat the ailment but all of the mental and emotional baggage that comes with it.

That is where Cynthia Shechter comes in.  Cynthia is an amazing physical therapist who specializes in breast cancer care and lymphedema and she runs and owns Shechter Care here in NYC.  Before I met Cynthia, I was told that I would need to wear a compression sleeve every day for the rest of my life and go to sleep each night with my arm bandaged.  I told my previous PT that I couldn’t live like that.  Cynthia agreed.  Her goal is to find ways to manage my lymphedema and still be able to live my life comfortably.

Since meeting and working with Cynthia and her team, my lymphedema has improved.  Any time there is a flare-up, she doesn’t freak out.  She just says, “Oh, don’t worry about it.  We’ll get it back down.”  She means it and she does.  This has changed my whole perspective and outlook on life.  You see, now I don’t cry myself to sleep every night.  I don’t wonder if life is worth living.  I know it is and I can find a way to live happily with this condition.  Life will be hard and it won’t be perfect but there will be more joy and happiness than I thought I can have.  This is a huge gift.

Coming soon, I will have an interview with the amazing Cynthia Shechter about lymphedema.  I’m hoping that by bringing her expertise to my blog, many of your questions will be answered about lymphedema and care for women who have undergone breast cancer treatment.  With awareness and education, it is my hope that no one will have to feel hopeless like I did and will be able to advocate for their own care.  I can’t wait to introduce her to you all.

Did you develop lymphedema after breast cancer surgery and treatment?

How has your life changed as a result of lymphedema?

What is one thing you would like people to know about your lymphedema experience?

 

 

Awesome Breastforms

I was at my physical therapist’s office today and as I was getting undressed, I noticed that she had a little knit boobie on her desk.  “What is that,” I asked?  I thought it was one of those little beanies you put on babies when you’re breastfeeding.  But no, that’s not what it was.  It is a breast form, by Awesome Breastforms, for women who find a traditional prosthesis uncomfortable or too heavy.

The great thing about these breast forms are that they are hand knit or crocheted by volunteers.  These volunteers not only custom make a breast form but they pay for the yarn and the shipping!!!  That means that there are many women (and men, maybe) who not only give their time but there money to make a difference in the life of a woman who has gone through breast cancer surgery.

I’ll be adding the link to my Freebies section (see above) but I wanted to share this resource with you now.  If I knew about this before my reconstruction, I would have gotten one for myself.  Wanting a little boobie pillow isn’t a good enough reason for one, unfortunately.

Let me know if you get one!!!!

One Year Mastectaversary

I know I said that I wasn’t going to post while on my staycation but I realized that one year ago today I had my mastectomy.  Crazy!  Life hasn’t been the same since.  I miss my old body and one year later I still haven’t gotten used to the new me.  This is a really slow process.

Here are some old posts about my mastectomy.

About a week before my mastectomy, I threw myself a bye-bye boobie party.  It was great because all the people who love and support me gathered to lift me up.

Dealing with disbelief and a cancer diagnosis the night before my mastectomy.

My mastectomy story.

The strangest post-mastectomy side effect!

Enjoy the long weekend!!!!

Mommy Mondays: No Bones

We all know what toddlers are like.  When the are good, they are wonderful.  But when they are bad…watch out!!!  Oliver is much of the same.

When he is have a good day (or good moment), it is amazing.  He will joke around, sing, dance, laugh, play, try out a new sentence, sing his abc’s, talk about trains and more.  But that can switch on a dime.  Lately, when Oliver is throwing a temper tantrum or gets upset, he will drop down on the floor and lay there completely limp.  The goal, on his end, is to ensure that picking him up is as physically difficult as possible.  And it is.  Because I don’t have a normal 2 year old.  I have a 38 inch, 34 pound 2 year old (that’s the size of an average 3 1/2 – 4 year old)!

Initiating “no bones” sequence.

Beginning public tantrum by rolling around and screaming.

Screaming bloody murder as if I was the worst mother ever because I took him to the National Air and Space Museum and showed him the inside of an airplane. GASP!

Dealing with these things is hard under normal circumstances.  We’ve all seen it and if you have children, you know from experience.  But dealing with the tantrums while weakened by chemotherapy is a whole different ball game.  We don’t just deal with the “no bones” tantrums.  We also have the hitting, kicking, thrashing tantrums.  And because I’m still Oliver’s primary caregiver, I deal with most of these.

I don’t know when it happened but about three weeks ago I had a pull in my arm on the side where I had my mastectomy.  I can’t pinpoint exactly when I pulled it but I can bet you anything it was when I was dealing with Oliver.  Even if it wasn’t, every time I had to pick him up off the floor, hold him while he was angry or frustrated or lift him in his crib for a time out, it would make the pull worse.  As a result, I couldn’t stretch my arm all the way up, normal daily activities were painful and lifting Oliver was a challenge.

I’m on the mend now but because the injury was on the side of my surgery, I now have to go for a physical therapy consult.  For.  Real.  This is not a terrible thing but I already have no time in my schedule.  Between work, raising Oliver and treatment, I have nothing left.  But I have to do this.  So I can keep lifting Oliver, no matter what his mood is.

Why does everything have to suck?

3 Weeks Post Mastectomy: The Weirdest Side Effect

I can’t believe that it has been 3 weeks already since my surgery.  I’m healing well but still sore.  I can lift my arm almost all the way up but when I try to go all the way, it feels the same as when you try to do a split and can’t get there.  That stretchy, pulling sensation and tightness.  That should go away soon.

But with all of the soreness and pain, there has been one side effect that has thrown me for a huge loop.  Whenever I get the chills or goosebumps, my goosebumps under my arm on my mastectomy side hurt.  Like really hurt!  It hurts to get goosebumps!

I love the fall weather that we’re having but it comes at a price.  I try to wear warmer clothes but still sometimes that is not enough.

How strange, right?  Has anyone ever heard of anything like this before?