And So, Breast Cancer Awareness Month Ends

This has been an interesting and eventful month for me in my life with breast cancer.  I have started my chemotherapy regimen and I have lost my hair.  In between all of this, women have been marching, walking, running to raise awareness of breast cancer or to shine as survivors.  Stores have been featuring the color pink in everything; bras, bags, hair accessories, lipsticks…you name it.  News shows have been following news anchors to their first mammograms and putting it on television.  It has been everywhere.

But here is my question.  When does awareness become exploitation?  There has been controversy over breast cancer awareness in the NFL, when there seems to be a problem with how players are treating the women in their lives.  They are being forced to wear pink sneakers, pink gloves, sell pink things at the NFL stores…how much of this raises awareness and how much money goes toward research?  Are they just trying to make a buck?  Get more fans and viewers?  What is the real incentive here?

What about the day when women were encouraged to spend the day without a bra?  Set the tatas free!  How exactly does this raise awareness about breast cancer.  I’m sure intensions are good for some, but I still don’t get the connection.  As a woman with only one tata (or a ta) it’s not about setting them free from the bondage of my bra.  It’s about knowing what constitutes a healthy breast and knowing what that feels like.  Going braless with nipples pointing doesn’t seem to get the message across that you need to know your body.  It’s just showing off, in my opinion.

Some people have asked me if I have done the walks, watched the shows on tv, watched the documentaries, bought pink. No, no, no, no and no.  Maybe it’s because I’m in the thick of it.  I don’t have the time or the emotional capacity to deal with it all.  But it all seems kind of yucky to me.  Like somehow, we’ve forgotten what is important.  Breast cancer awareness month has become like the Christmas of the cancer world.  Things to buy, events to go to, shows to watch.  For me, it’s lost it’s authenticity.

So, as a community, what do we do?  What do we want to see?  If we could recreate breast cancer awareness month, what would we want it to look like?

What I would like to see is that all clinics and insurance companies drop their requirements for referrals and make the process of obtaining a mammogram easy for women.  You can make appointments over the phone or online.  Women can donate funds for women in need to help pay for mammograms, ensuring that it is not a financial strain.  Women write about their success and challenges in dealing with breast cancer and it is shared in offices all over the globe, so that no matter what you are going through, you know you are not alone.

I don’t need someone to wear pink in front of me to know I’m supported.  I don’t care about the pink ribbon.  I care that you are all taking control of your body and being proactive.  That is how we kick cancer in the ass.

So, to end breast cancer awareness month, I make the same plea to you that I did at the beginning of the month.  Touch yourself.  Give yourself a self examination.  I have info on this blog on how to do it or you can research it yourself.  Schedule your first mammogram.  If you are scared, go with a friend.  But just do it.  I hope that next year at this time I can announce that I’m cancer free.  I hope that I hear from a bunch of you that through this blog you got the courage to get yourself checked.  And despite the results, that you feel empowered that you have taken control of your life.  Please make a pledge here to do this today.

As always, feel free to contact me with any questions.  I am one of your resources.

photo courtesy of healthline.com

Hair Today, Gone Tomorrow

Choosing whether or not to shave your head before it starts falling out on it’s own is like choosing a politician for office; you choose the best of the worst and just hope to God you picked the right choice.  One decision I have been grappling with is whether to shave my head before anything starts falling out or to wait until I start seeing some hair loss.

The pros to shaving it first is that I get to be in control of when and how I lose my hair, I don’t get clumps of hair on my pillow or in the shower and it doesn’t fall out while I’m teaching a class.  The cons are that if I shave it too soon, I might have missed some extra days with my hair and it is traumatic to just shave it off.

The pros to letting it start to fall out on its own is that I have physical proof that my hair will in fact come out, putting to rest the denial I have been experiencing.  The cons are that it falls out in the shower, on my pillow, making a mess and that it could fall out at any time.

In the end, Ken and I decided that last night, day 13 on chemo, would be the day to do it.  It was one of the hardest things I ever had to do.  I procrastinated for about 2 hours.  I had to check my emails, there were new updates on facebook, I had to check my blogs for the day…anything that would prevent the inevitable.

And it was inevitable.  By the end of the two hours, I was on the bed hysterically crying at this point, Ken noticed that the front of my hair looked brittle.  I pulled at it, and it came out.  “I guess this is it then.”  I got up, dried my face, walked into the bathroom, put my head over the tub like I was going in the guillotine.  Ken got the buzzer.  “You’re upset so I guess we are just going to get it over with.”

“No.  Let’s have fun.  This is awful enough.”   So this is what we did while we shaved my head.

First I got out a Trader Joe’s Chocolate Ganache cake to numb the pain.

I ate that slice and then a few bites more.

Ken shaved around my head first. Right before this I was crying but we started laughing because we actually liked the look!!!!

Then we shaved some more. Ken gave me a death lock. He found it sexy.

We were going for a mohawk here but it was getting late and we didn’t have time to do my hair. Instead we gave the camera our best “fuck cancer” look.

The finished product. Ken said I still look beautiful. I’m not sold yet.

This morning I tried again with a little makeup. I still don’t love it.

Ready for work. My first look with a scarf. I chose the side bun with the deep purple rose.

The actual shaving of my head was a traumatic experience.  I hope I never have to do it again.  But it’s like all of the other awful things I have had to endure in the last three months; the work-up to the event is worse (or close to worse) than the result and once it’s done I can wipe my tears and move on with my life.  And I have moved on.  I taught a class today and it was an incredible refuge from my sadness and mourning.

I’m also happy with my choice of shaving my head in the privacy of my home.  At first I thought I wanted it done by a professional.  At home I was free to cry my ugly cry, scream, yell, whatever.  I don’t think I could have done that in front of a stranger and the freedom to behave as I needed was freeing.  It helped me get through.  And now it’s something Ken and I can say we overcame together.

On to whatever’s next.  I had my second chemo infusion today.  Let’s hope for minimal side effects.

Mommy Mondays: Dealing With a Toddler Tantrums While Undergoing Cancer Treatment

It’s official.  My advanced child is beginning his terrible twos early.  Just like his mama, he’s always been prone to the more dramatic reaction to things disagreeable but, it’s getting to a whole new level now.  In the last few weeks, Oliver has been extremely moody and very quick to react to something he doesn’t like.  I have always known that this day was going to come but to try to deal with it on top of everything that is going on with me right now is quite a challenge.

For starters, anyone with a toddler knows that they require a lot of energy and attention.  One thing that chemo deprives you of is energy and focus.  Hmmmmm…..whattodowhattodowhattodo?  For example, when Oliver wakes up in the morning, bright eyed and bushy tailed, we all better be ready to get up and entertain.  When dealing with my worst days of chemo last week, I could barely move much less entertain the little one.  It did not go over well.  It kind of looked like this.

He’s also in a phase where he gets frustrated very easily when he wants something and can’t have it, when we don’t read his mind, when something isn’t as exactly as he wants it in that moment even though it was fine the day before….  For example, yesterday he had an utter meltdown because I cut his peanut butter and jelly sandwich in half.  I always cut his peanut butter and jelly sandwich in half.  Always.  But yesterday, he freaked out.  I mean screaming, stomping, hitting…the works.  Yesterday was a good day for me so I had the capacity to deal with it.  But if it was one of my bad chemo days, I’m not sure what I would do.

One solution is to have help on hand on my bad days.  This is good so I can still see Oliver but others are here to help me with those situations.  The other is to ship him off to Grandma and Grandpa so that I don’t even have to hear or deal with it.  Because sometimes, no matter who else is here, he just wants mommy.  And I don’t know if I can always do it.

It makes me feel like a bad mother even though I know that by delegating, I’m being the best mother I can be right now.  But I don’t have a lot of strategies to deal with toddler tantrums to begin with.  We are figuring it out as we go.  So how do I do this when I feel like total crap?

I’ll take any and all suggestions.  Besides giving him up for adoption, there are no bad ideas (I think).

One of Oliver’s first tantrums at 12 months. Doesn’t it look like fun?

This Is The Week I Lose My Hair

It seems that every few weeks, I have something new to dread.  That is the curse of having and living with cancer.  Always a new test, treatment and now this.  I have made it over many humps at this point including my mastectomy and first chemotherapy treatment.  But now the time has come where not only do I have cancer, I will look like I have cancer.

I have been doing everything possible to prepare for this point; thinking about it, talking to others about their experience, cutting my hair short so I could see what I might look like, giving myself pep talks….  But I don’t think any of it has really worked.  I am starting to dread it, even convince myself that it is not going to happen.

I wrote to my nurse (my oncologist’s assistant) yesterday to double check on what I should expect.  I hoped that she’d write that, “Well, not everyone loses their hair on this chemotherapy treatment.  You stand a chance.”  But that is not what I heard from her.  “Hair loss typically begins 2 weeks after first treatment, so right around the time of your next infusion.”  That’s on Wednesday.

The plan all along has been to shave it on Tuesday because I’m teaching Wednesday and Thursday and don’t want it to start falling out in clumps in front of a class.  That would be awful.  But to shave it…to actually shave it off of my head…I don’t know if I can do it.  Some women feel empowered by beating chemo to the punch and doing it themselves, in their way.  I thought that was how I was going to be or, at least, that is what I have been trying to convince myself.  In the end, I don’t want this poison to do the dirty work for me.  I want my say.  Except I say, “hair, please don’t go.”

Anyway, since that’s not going to happen, I spent the afternoon playing with some scarves, hats and pins to get ready for going out on Wednesday.  I am still getting a wig from Hair We Share but it will not be ready for several weeks and I have not bought a backup.  Probably because of the denial I’ve been in.  I did a little more searching but couldn’t commit to anything.  It just didn’t feel right.

So here are a few of the scarf ties I have been playing with.

Wrap I received from Hope Scarves. Isn’t it beautiful and it’s so soft.

Simple black pashmina scarf with a side chignon and a dark purple rose pin at the side.

Black pashmina scarf tied in a bun with a funky red pin at the side.

Same pashmina scarf with bun but a bow headband as a decorative accent.

My going out “Grey Gardens” look. A black turban hat with a feather pin in the middle.

Black pashmina scarf with a front knot.

Black scarf with bun in the back and a satin head scarf wrapped on top.

What do you think?  I learned how to tie some of these scarves by watching videos on a great site, 50 Ways To Tie A Scarf by The Knot Library.  It is a great resource if you want to learn great ways to wear your scarf on your head or even around your neck and the tutorials are very easy to follow.  This girl has a lot of great ideas as well.

Lastly, I would like to give a shout-out to a wonderful organization called Hope Scarves.  Hope Scarves in an amazing, amazing organization whose mission it is to “partner survivors to share scarves and stories with women facing cancer.”  It was started by a woman named Lara MacGregor who was diagnosed with breast cancer at age 30 and 6 years later, in January 2014, after being cancer free, was diagnosed with stage IV metastatic breast cancer.  Anyone who is facing cancer and it’s treatments can write to request a scarf.  You are then partnered with a survivor and will be sent a scarf along with a story from the woman who sent it to you.  Many of the scarves sent are scarves that were sent to them when they applied to the program!

The scarf that I am wearing in my first picture is my Hope scarf.  Isn’t it beautiful?  It’s super soft too.  It was sent to me by a woman who was diagnosed with breast cancer at age 35 and is a mom of 2.  To hear her story and her words of encouragement touched me even more than receiving the scarf.

If you are going through chemo, I highly recommend that you look into Hope Scarves.  I can’t wait until I’m cancer free so I can be for someone what my partner is now to me.  Something to look forward to.

Because I think Hope Scarves is so great, I’m going to put their donation page here.  I know from personal experience that it goes to a good cause.

Do you have special ways you like to tie a scarf?  Any amazing resources?  Please share in the comments area for all to see and learn from.

Summary Of Side Effects From My First Chemo Treatment

It occurred to me that it might be helpful to those who (unfortunately yet inevitably) go through chemo after to me to document my reactions and side effects.  Everyone reacts to chemo differently so what happens to me might not necessarily happen to you but at least I’m putting it out there.  I think doctors want to be honest but will downplay things to keep you calm and positive, as well they should.  But I worry less when I have knowledge and understanding.

I got my first chemo infusion on Wednesday, Oct. 15.  I was very tired by the end of the day but that’s probably due to stress, anxiety, crying and anti-anxiety drugs they gave me.  The next day, Thursday, I still felt fine.  On Friday, I started to feel a bit yucky and it turns out I was coming down with a cold (given to me by my son, I was probably already infected before I started chemo) and got a sore throat.  By the end of the night I was pretty tired.  I lost my appetite, although food didn’t make me sick.  I was able to eat small amounts but nothing tasted very good to me.  I heard that chemo can give you a metallic taste in your mouth.  For me, it was sour.

On Saturday, I was so tired I could barely move.  Each day I was able to get myself outside for a walk but couldn’t do much else.  I was a bit irritable and lacked focus.  I started to feel really fuzzy in the head and I’m told that this is called, “chemo brain.”  I took naps but woke up just as tired and fuzzy.  I still lacked an appetite and had the sour taste in my mouth.  I also had a full fledged cold at this point.  Sunday was more of the same.

On Monday, things began to turn around.  In the morning I was still exhausted but I was also hungry.  I tried to rest for most of the day and after an afternoon nap I felt refreshed.  I went to a sing along with my son and husband and to the grocery store for shopping, which I thought was a pretty big deal.  I still wasn’t hungry for much but could feel that I was getting hungry, meaning nothing sounded good to me but had hunger pangs.

On Tuesday I felt close to normal.  I woke up feeling refreshed and was able to go about my normal routine.  I began eating more normal food again although my appetite still has not quite returned to what it was.

My cold is still lingering a bit but nothing that’s awful or uncomfortable.  I managed to completely avoid any nausea, which, in my opinion, is the best I could hope for.  Some other reactions that I noticed is that my face and neck broke out pretty badly and still is.  It seems my skin does not like chemo very much.  I guess I’m going to look like a teenager for the next few months.  Again, I’ll take that over nausea and vomiting.

So, that is everything I went through this week.  Uncomfortable, yucky but manageable.

Back To Work and Grateful

Me facilitating a workshop a few years ago. Obviously loving my work!

When the alarm went off this morning, I could hear the rain pouring down on the pavement outside.  It was 7:15 and it was still dark and there was thunder in the background.  It was exactly the kind of morning where you would rather do anything than get out from under the covers.  But today I had a job.  One that I was excited and terrified about and I needed get myself ready.

For the first time, I was going to facilitating a theatre workshop with a group of college students.  And they aren’t just any college students.  They are artists/scholars.  The professor, a wonderful woman full of knowledge and creativity, had high expectations for her students.  She brings in artists, who are leaders in their field, into her class throughout the year to teach and mentor her students.  To say that I was intimidated by this residency would be putting it lightly.  But I have been wanting to challenge myself lately instead of doing the same old thing and,this was the job that would give me that satisfaction.

When I took this job offer, I already knew that I had cancer and that I would be undergoing chemotherapy during this time.  It was a huge risk for me to take because I didn’t know how I would feel mentally and physically.  Thankfully, I have been feeling well enough to work but I was nervous nonetheless.  I had a lot to live up to.

After my session today, I received the biggest compliment.  The professor, with her wonderfulness and high expectations told me that my workshop was the best she has encountered in her class.  She was blown away by what her students accomplished in just and hour and a half.

I am not writing about this because I want to gloat.  I’m writing about this because I am so insanely relieved.  I’m relieved that despite my illness, I am still good at my job and that I can move beyond the physical and mental limitations and challenge myself to try new things.  To be better and succeed.

I am so glad I got out of bed on this yucky, yucky day.  It was so worth it.

Fuzzy Wuzzy

It’s been 4 days since my first chemo treatment.  I’m so grateful that so far, at least, I have managed to avoid the dreaded nausea and vomiting so commonly associated with the treatment.  Really, I could not be happier.  I do, however, feel like I’ve been hit by a ton of bricks.  I’m tired beyond tired and my thinking is kind of fuzzy.  Hopefully this will clear up in the next day or two as I hit my upswing.

I also seem to have caught the cold that Oliver has.  I had a sore throat that kept me up most of last night but I have been hydrating, hydrating, hydrating and that seems to have gone away.

Yesterday was a good day.  We even got to go to the park for a little family walk.  I haven’t gone out yet today but might try it as soon as Oliver wakes up from his nap.

That’s all for now.  Onward and upward!

Day One With Chemo + Waiting For The Shoe To Drop

So far I have had a pretty good day one with chemo.  I woke up in the middle of night feeling “not right” but too tired to identify what exactly that was.  Just as a precaution, I woke up my husband to get me the first pill I should take if I experience nausea.  It must have helped because I went back to sleep and woke up feeling fine.

My only symptoms today were feeling a bit tired, but not too bad and, lack of an appetite.  I made sure to eat small snacks all day and hydrate like it’s my job in an effort to avoid other side effects.

I had to go back to NYU today to get my follow up shot of Neulasta.  It is given as an injection at least 24 hours after a chemo treatment ends.  it is meant to boost white blood cell count in an effort to reduce infection.  Chemo kills fast growing cancer cells but white blood cells are also rapid growing cells so I am now immuno suppressed.  A side effect of Neulasta is flu like symptoms like body aches and bone pain.

After I got my shot I took a trip to Housing Works Thrift Shop and Angel Thrift Shop to look for some cool looking scarves.  I came up short unfortunately but by the end of my trip I could feel that I was getting pretty tired.  I have been instructed to listen to my body so I got on the train, came home and took a long nap.

Ken called me in a panic asking me to get up, eat, go to the bathroom (to avoid a really bad bladder infection which is a side effect of one of the chemo medications) and hydrate.  So, I just had half an egg salad sandwich and drank 8 oz of water and plan to drink at least 16 oz more before the end of the night.

One hard part of all of this is that I think we are all waiting for the shoe to drop.  Everyone is on their toes waiting for me to get sick.  That is one of the hard parts going though this; everyone is waiting and watching for the shit to hit the fan.

For example, my mother-in-law has generously offered to sleep over tomorrow night and stay all of Saturday to watch Oliver (Thank you, Mary!!!!).  It really is a wonderful offer but it also feels like there is someone here waiting for me to get sick.  I know that is not her intention AT ALL but that’s what it feels like.  I can’t have someone watching me wondering if I’m not going to make it, although I probably should.

I’m not good at asking for help and I’m finding it hard to do it here.  I feel judged, judged for having cancer.  I might not be rational but it is what it is.

If I start feeling ill, tomorrow should be the day.  I’m trying not to think about it, refusing to believe that I might have to alter my life.  I might have to ask for help.  That is hard for me.

Officially a Warrior in an Epic Battle

I started chemo today.  It was an awful, terrible, no fun day.   I was never in pain, I never felt sick and I was treated really well.  But, I came in for my first day of chemo.  There are few things more awful than that (yes, I can list at least 50 right now but this is just a phrase).

I’m feel really tired, they gave me a lot of Ativan, so I’m going to keep this short.  As of right now, I’m ok and not feeling sick.  Just exhausted.  They said that because of the steroids I might feel like I can lift a car tomorrow.  I’ve been instructed not to lift cars but no promises here.  Then, by Friday, symptoms should appear and we’ll see what those are if I have any at all.  I just don’t want to anticipate it and make it happen, you know?

I’ll just share a few pictures of the day (nothing gross or graphic) just so you can see what the chemo looks like.  I just found out the other day that one of the drugs is bright red.  I’ve heard that sometimes patients find out during their first session and freak out.  I’m here to show you what you get when you have breast cancer and will be getting AC.

After having blood drawn and checkin in with the doctor, here is a little show of how the day went

First I had ant-nausea drugs. Yes, please!

Then the real stuff. The A. The A of the AC. Fun fact, it makes you pee red/pink for 24 hours.

The last part. the C.

The bandage from my port surgery on Monday plus inspirational quote tattoos made by my friend Nicole, and conceived by Nicole, Lee and Loren.

On my arm

A bandaid and we’re done and going home.

There’s much more to the story but I’m crashing hard and will talk more about it another day.  Good night, all.  Thank you for the support.

Starting Chemo Tomorrow

The day has finally come.  I think I am in a bit of denial about this.  I have been imagining this time in my head; sitting in a ball in the corner of my room, crying and shaking.  But I’m not doing that.

I am scared, very scared.  I haven’t spoken to anyone who has said that their chemo experience was easy.  Everyone experiences some side effects that interfere with normal life.  I know I am going to lose my hair.  I know I am going to be tired.  But what else?

Like most things, it’s walking into the unknown that is most frightening.  Like before my mastectomy.  The fear was unbearable and I was barely able to walk into the OR.  Now, just having had my third surgery in two months, I look forward to the nap you get with anesthesia (it’s the best!!!!!).

Tomorrow is the beginning of a new unknown.  Five months of who knows?  I am detached and terrified all at the same time. I think tomorrow will be particularly hard.  I can’t imagine letting them stick me with a needle and administering the first poison (it’s red in color).  How can I let them do that to me?  How can I not?

So here’s what I ask of you.  I know that they are going to keep me pretty distracted with information (they send down a social worker, a nutritionist and massage therapist) but can you all send me photos, videos, articles that will make me laugh, inspire me or make me go “awww…”  Nothing too deep or serious.  Nothing that will make me cry.  There will be enough of that, I’m sure.  I need distraction.  Anything you can send my way would be amazing.

Onward and upward!  Let’s kick cancer’s ass!!!!!!