I Guess It’s My Fault

This picture just appeared on my facebook feed from a site that talks about healthy and natural alternatives to cancer treatment and about a healthy lifestyle and it pissed me off!!!!

Really, there is steam coming out of my ears over here and I promise you, it’s not a hot flash!

What does this mean?  Really?  That anyone who is truly healthy obtains a “get out of jail free” cancer card?  That poor choices in health are to blame for cancer?

I am not an unhealthy person.  And while I might not be the healthiest on earth (I don’t love exercise but I move a lot, take the stairs in the subway, etc…) I eat well and try to take care of my body.  I try to eat organic and antibiotic free food as much as possible and avoid prepackaged crap but everything organic is tough on the wallet.  But I do my best.  I also enjoy the occasional pastry, ice cream cone, bag of peanut M&Ms, glass of wine and quesadilla.  This does not make me an unhealthy person, per se, but eating less of these things would be better, no doubt.

While our lifestyle choices can contribute to our chances of developing breast cancer like smoking, excessive drinking and being overweight, it does not guarantee that it will happen.  Just like having kale smoothies for breakfast every day, exercising six days a week and eating only non-GMO, antibiotic free, organic, free range, grass fed, fair trade rice cakes will guarantee that you won’t.

Genetics plays a role in developing cancer.  So does terrible luck.  For me, I think it’s both.

But this little picture, with little peach roses all over insinuates that I got my cancer because of ME.  Because of my lifestyle choices.  I did this to myself.

I guess I should have eaten less chocolate chip cookies, had one less slice of pizza, walked that extra mile.  Then this would have never happened to me.  I guess it’s my fault.

Weaning, A Memorial Day Memory

“No one could give her such soothing and sensible consolation as this little three-month-old creature when he lay at her breast and she felt the movement of his lips and the snuffling of his tiny nose.” ~Leo Tolstoy

It’s hard to believe that my journey with breast cancer, in a way, started a year ago.  Memorial Day weekend.  With saying goodbye and opening up a new chapter of motherhood.

Whenever I would imagine myself as a mother, breastfeeding was always a part of it.  I always knew it was something I was going to do.  After a difficult delivery that didn’t go according to plan, breastfeeding was a challenge.  I always thought it was supposed to be easy.  Natural.  I would just put my baby on my breast and he would suck and that would be that.  But for me and Oliver, it took time.  A lot of time and a lot of money seeing lactation consultants and a cranial sacral specialist.  It took six weeks until we finally got the hang of it.  But when we did it was utter bliss. I wasn’t one of those mothers who would cover up in public.  I loved breastfeeding and I think I did it uncovered almost anywhere.  In fact, if you live in Brooklyn, you’ve probably seen at least one of my boobs!  The only place I didn’t feel comfortable was on public transportation.  But I did it in restaurants, the library, a bar, the park, a bench in the city…you name it.  I was a 24 hour diner.  I was never closed and I loved it.

Fast forward 17 months or so, and I was still breastfeeding Oliver.  In my mind, I would do it for 18 months and then assess whether or not he still needed it or was beneficial in any way.  Or if it even fit into my lifestyle at that point.  But somewhere at around 15 months old, breastfeeding became less about nutrition and more about keeping calm.  Suddenly, Oliver was pulling my shirt down when I knew he wasn’t hungry, begging for my breast.  He was using me as a pacifier.  A human pacifier.  I was totally down with breastfeeding because of the close bond it creates between mother and child and continuing for as long as he would allow but I was never prepared for being a walking binky.

As a result, I started to offer the bottle more often.  We had started him on cow’s milk by then so getting him to drink from a bottle that wasn’t breast milk was not a problem (I was also so over pumping and had stopped by the time Oliver was 14 months old).  By the time Oliver was 17 months old, he began asking for a bottle for sustenance and the breast for comfort only.  I tried nursing him only in the mornings and the evenings but that didn’t work out.  He wanted to be latched all the time and it was starting to get in the way of living life.  I started to get frustrated by this and wishing for it to end.

Be careful what you wish for.

It was Memorial Day weekend, 2014.  I was trying to nurse Oliver so he would go to bed.  That is how he usually fell asleep and I would put him in his crib either drowsy or passed out from a milk coma.  But that night he just couldn’t be satiated.  I’d attach him to the left breast (the strong producer) and after a few minutes he’s say “that side (da sih).”  So I’d switch him to the other breast and after a few minutes he’d say, “that side,” again.  We did this over and over.  Back and forth.  Back and forth until finally I asked him, “Oliver, would you like mommy to go get you a bottle of milk?”  Oliver perked up, started kicking and squealing and said, “yes.”

And that was it.  He never breastfed again.

It was the right time to stop breastfeeding because it was Oliver’s choice.  He’d had enough.  We had done well.  17 months of breastfeeding is an amazing accomplishment, one of the things I’m most proud of in my life.  And maybe it’s good that we stopped when we did because one month later is when I felt my lump.  Two months later I was diagnosed.  So along with mourning the loss of a child that needs me for nourishment, the loss of that amazingly cozy, warm and tingling feeling of a baby on your breast, I also had to mourn the loss of the breast itself.

I still miss breastfeeding and sometimes wish we were still doing it.  But where would that leave me?  Would I have ever caught the cancer in time for it to be curable?  Would I have had to wean him suddenly, causing shock and grief for us both?  Or if I had weaned sooner, would I have caught my cancer sooner and avoided some of the harsh treatments I’ve had to endure?  I’ll never have these questions answered.  That’s ok, I guess.

It’s not all sad.  Breastfeeding has been replaced with so many other wonderful things like reading books, snuggling in my bed, playing with trains, trips to the zoo and more.  Life goes on.  We all move on.  That’s the way it should be.

Versatile Blogger Award

I want to humbly thank Momoseita for nominating me for a Versatile Blogger Award.  I’m deeply touched that people are reading what I have to write and that it is (hopefully) strengthening the community of breast cancer survivors, those newly diagnosed, caregivers, friends and more.

When I found out I had breast cancer, I was pissed off.  My answer to that anger was creating this blog with the hope that I could connect to other women who were going through the same thing, to create a space for advocacy, to let family and friends know what is going on with me and, selfishly, to vent from time to time.  I am most grateful to the women whose blogs I have been reading who inspire me every day.

As part of the rules of winning the award, I have to tell you seven things about myself.

1. I am a native New Yorker.  I’ve never lived anywhere else.  I was born in Brooklyn, raised in Staten Island, lived in Manhattan during college, moved to Queens and am now back in Brooklyn where I live with my husband and 2 1/2 year old son.

2. My secret bad habit is that I like to lick my plate.  I love sauce and I can’t stand it when sauce is left over on a plate and I just have to lick it clean.  Of course, I don’t do this in public but I do it at home all the time.

3. I’m deathly afraid of cockroaches.  I seriously can’t handle them.  We get really big waterbugs (a kind name for gigantic roaches with wings) in our apartment.  I can’t go near them.  I run into another room and hide.  Once, when Oliver was three months old there was a roach the size of a mouse running around the house.  It was so big, Raid wouldn’t even kill it.  I called my husband and begged him to come home to take care of it.  He didn’t.

4. I love my work as a teaching artist but if I could choose another career, I’d be a travel photographer.  I love taking pictures and I love to travel.  What could be better than getting paid to take pictures while I explore a new culture?

A favorite travel photo of mine.

5. My favorite movies are When Harry Met Sally, The Princess Bride, Rear Window, and Life is Beautiful.  My favorite books are Interpreter of Maladies, To Kill a Mockingbird, The Night Circus and The Time Traveler’s Wife.  My favorite musicals are A Chorus Line, Anything Goes, Fun Home and Into The Woods.  My favorite plays are Macbeth, The Normal Heart, Black Watch, Hedda Gabler, The Importance of Being Earnest and The Curious Incident of the Dog in the Nighttime.  My favorite dessert is a freshly baked chocolate chip cookie.  My favorite food is mashed potatoes and stinky cheese (not together).

6. I can’t walk in high heels.  My mom never let me wear them.  She told me I couldn’t walk in them so I never learned how.  I’ve never owned a pair of stiletto heels because I’d never be able to get five feet without toppling over.

7. I can be a harsh judge of people at first but I am very loyal to my friends.  I’ve worked really hard on opening up when I first meet someone and I think I have made huge improvements.  I need to do better.

To pay it forward, I’d like to nominate some other great blogs I have started to read for the Versatile Blogger Award.

thesmallc

Jessica Wilt

Stellinasweets

Axillary Web Syndrome/Cording

This morning I finally got an appointment with a physical therapist to find out what that pull in my arm is and what is causing the swelling.  I’ve been losing sleep, literally, because I was sure it was lymphedema.  Lymphedema is the swelling of the arms or legs.  It can occur after a mastectomy along with axillary lymph node dissection or a after a sentinal node biopsy.  Because I had cancer in two of my 12 lymph nodes, they were removed at the time of my mastectomy.  Getting lymphedema is a fear of mine because once you have it, you have it forever.  There is no cure, just maintenance.  I’m convinced that I already have a mild form of lymphedema in my right foot (it has always swelled up and doctors can’t explain why) so to have to deal with it in another extremity seemed just too overwhelming.

Part of the purpose of seeing this particular therapist was to get evaluated for lymphedema but when I asked the therapist what she thought she said, “Well, I can’t diagnose you.  A doctor needs to do that.”  Excuse me?  I found that really frustrating because I didn’t really get an answer but, here is what I learned.

I have been diagnosed with axillary web syndrome which is also known as cording.  Cording can occur in women who have had a mastectomy.  When you develop cording you can literally feel a cord underneath your skin.  Mine feels like a guitar string.  It is not a muscle.  According to the therapist, no one knows exactly what it is, why it happens or what to do about it.  It does have something to do with the lymphatic system (although I wrote to my surgeon who says it has to do with the tendons but I’ve read several articles that say differently).  Cords are painful and tight, like a pulled muscle and it restricts your range of motion.  For example, I have a hard time straightening my elbow or reaching too far right now.

Here cording is shown in the upper arm area.

There isn’t a lot of research on axillary web syndrome but I found this case study and this one when doing my research.  The first one was published in 2009 and the second in 2007 so, I don’t know what information is still current.  This is what was said about axillary web syndrome in the second article, Treatment of Axillary Web Syndrome: A Case Report Using Manual Techniques.  “The surgeon postulated that when lymph nodes are removed, the adjacent lymph vessels, which are now non-functional, become fibrosed. They can attach to the axilla or chest via scar tissue. These hardened lymph vessels become apparent when the patient lifts her arm and stretches the tissue. Inflexibility in the lymph vessel can lead to significant pain and avoidance of movement. Adaptive postures can then lead to a loss of arm range of motion.”

Treatment, for now will include weekly appointments with the physical therapist.  I have two stretches to do, twice a day.  I will be learning lymphatic massage to help reduce swelling.

As for the question of lymphedema, the therapist says there is cause for concern when one arm is 2 centimeters or more larger than the opposite arm.  There is definite swelling in my right arm, which I knew about.  In one area it is exactly 2 centimeters bigger than my other arm.  However, we don’t know what size my arm was before I developed this problem so it’s very possible that there is a difference in size between my two arms to begin with.  Also, cording can cause swelling in the affected area.

I left the office today with some answers, which is really good and can be dealt with but I haven’t been given full reassurance that I do not have lymphedema.  I am also confused and frustrated by the fact that measuring the arm is not part of standard care before and after a mastectomy.  If developing side effects such as cording or lymphedema is possible, shouldn’t we have a baseline in order to properly diagnose?

Has anyone else dealt with axillary web syndrome?  What was your experience?  How can we let our surgeons know that preemptive screening can be helpful for future diagnosis?

Check out this article for more information on cording.  I found the information very useful.  This video was useful as well.

A 10 Year Sentence

Photo from cartoonstock.com

Chemo sucks.  Radiation sucks, too.  But one thing I can say about them is that they are administered for a relatively short time.  Their effects can last far beyond the end of treatment but the hell endured during treatment ends soon after the last dose is given.

To prevent my cancer from growing any further, I have gotten a mastectomy with axillary lymph node removal, five months of chemotherapy, three weeks of radiation and a year of Herceptin infusions for my clinical trial.  The next and, I think, final method of prevention is Tamoxifen, a pill I need to take every day for the next 10 years.

Tamoxifen is a form of hormone therapy that is used for women who have a breast cancer that is estrogen receptor positive (ER+).  When a breast cancer is ER+ it means that it feeds off estrogen like cookie monster at an Oreo factory.  Tamoxifen attaches to the attaches to the hormone receptor in the cancer cell and blocks estrogen from attaching to that receptor, denying the cancer of it’s favorite treat.

photo from riverpharmacy.ca

Image from Susan G. Komen

The benefits of Tamoxifen can last long after the last pill is taken.  According to an article on the Susan G. Komen website “findings from a large randomized clinical trial showed that taking tamoxifen for an additional five years (for a total of 10 years) further reduced the risk of breast cancer recurrence and death [60]. For this reason, there is increasing use of treatment with tamoxifen for more than five years, especially among premenopausal women who cannot take aromatase inhibitors.”  That is why almost all women with ER+ breast cancer will be offered the pill.  It can also be used as a preventative for women who have not developed breast cancer but are considered high risk.

Side effects of Tamoxifen can include hot flashes, night sweats, vaginal dryness, weight gain, disruption of the menstrual cycle, risk of blood clots, stroke, cataracts, mood swings, bone loss and risk of endometrian and uteran cancers.  Premenopausal women are advised to not get pregnant while taking Tamoxifen due to potential harm of the fetus so using those eggs I harvested and saved is out of the question.

I have been experiencing hot flashes since my third chemotherapy treatment but they were starting to subside with time.  Ever since starting Tamoxifen, my instance of hot flashes and night sweats have increased.  I have also been experiencing insomnia for the first time in my life and/or restless, interrupted sleep, likely as a result of the the discomfort from the night sweats.  I try to wear light pajamas to bed and we now use a fan with the window open.  This has lessened the severity of the night sweats however I still wake up clammy but very cold…and hot at the same time.

I don’t know how long these side effects will last.  I hope that I will not have to endure ten years of waking up in sweat soaked pajamas.  I don’t think I could live like that.  The question is, do the benefits outweigh the side effects?  Oncologists seem to think so.

So far, I have served a month and a half of my Tamoxifen sentence.  Nine years and ten and a half months to go.

If you have been on Tamoxifen, what strategies have you used to combat the side effects?  Do they change over time?

Off My Game

So, I’ve been a little off this week.  I’m distracted with a possible new side effect, lymphedema and it’s completely freaking me out.  I don’t know that this is what I have, I’m going to be looked at tomorrow, but I’m so tired and frustrated.  Just when I am starting to feel good, something else could be going wrong.

All the thoughts about the consequences of living with lymphedema (I’ll get into that if it turns out I have it) have been having an effect on my work.  I’m just not on top of it like I usually am.  I’m distracted and unfocused.  I know that this can happen with anyone for any stressful reason so, my question is… when life is getting you down, when you are just not yourself and not at your best, what do you do to snap back into it?  Any tricks?

That Time I Lost My Shit At The Cancer Center

If you have never been through cancer treatment and chemotherapy, you would think that 4 weeks is a long time to heal.  Four weeks in cancerland is nothing.  Well, not nothing.  It’s enough time for my white blood cells to bounce back and protect me without daily shots of Neupogen.  It’s enough time for my hemoglobin to return to normal so I don’t feel like I’m going to pass out once I reach the top stair of the train station.  It’s enough time for you to heal just enough for the next phase to begin: radiation.

Radiation, in many ways, was much easier than chemotherapy.  There weren’t many side effects.  I would get tired but I’m always tired.  I work, raise a two year old and get cancer treatment.  Any of those things can be causing my fatigue.  In other ways, it was much more challenging.  Having to be there five days a week meant that I would have less time at home with my son, more commuting on the subways and in traffic (if I was driving), less time to do my work, cook, clean…  Personal time?  What personal time?  Just thinking about it stressed me out.

They did not love me, down in radiation.  I do not think they were used to the full time working mom who did not have an open schedule.  I booked my appointments weeks in advance since each day I’m in a different place at a different time.  The woman on the phone who booked my appointments was very kind but I could tell, as each day I would give her a new window of free time, she would get a little annoyed.

To my own credit, I called to book my appointment with the radiation oncologist 2 1/2 to 3 months before I was due to get the treatment.  I told them that my work for the spring was booking up and that, if I needed to be at the hospital daily, I would need to schedule as early as possible so I would know what work I could accept, what I should turn down and also, to arrange child care.  “We don’t book that far in advance.  The oncologist won’t see you until you’ve finished chemo.”  “You don’t understand!  I work and have a two year old.  I need to plan ahead.  If you don’t book me now, I probably won’t be able to be flexible.  You understand that, right?”  She said she would speak to the doctor and call me back the next day.  I never got a return phone call.

Flash forward three months later and low and behold, booking appointments was tough.  Not only were they fairly booked, they were just getting rid of their early morning and late night hours.  Imagine!  In New York City!  Having to go to the hospital for treatment five days a week but they are only open during business hours!  I don’t know why, but I took this as a personal offense.

No, I did not like radiation treatment at all.

But I went.  I went at my scheduled times and, unless the MTA had it in for me that day, I was on time, if not early.  One day, the day I had gotten the results of my genetic testing (I did not get much sleep the night before and even though the results were good, it was an emotional day) I got to the cancer center 15 minutes early for my treatment.  To celebrate the good results of my genetic testing, I had gone out for wine and oysters right before.  After about ten minutes of waiting in the waiting room, because I’m a cheap date, I put my head down and dozed off.  45 minutes later I woke up.  They hadn’t called me in.

I walked up to the receptionist’s desk.  “Hi, my appointment was 45 minutes ago and I’m still waiting.  Do you know how much longer it’s going to be?”  She called to the back where the radiation machines were to inquire about the wait.  She hung up.  “It’s going to be at least another half hour.”  Her face was blank.  Unapologetic.  Frozen.

“Excuse me?”

“Your machine is backed up.  It’s going to be a while.”

“But I have to pick up my son.  I was supposed to be in 45 minutes ago.”

Blank stare.

“What am I supposed to do?”  The tears started to form.

Blank stare.

“I’m not asking a rhetorical question!!!!!  I have a two year old at home, I have to let the sitter go, but I’m told that skipping radiation is a dangerous thing so I need you to TELL. ME. WHAT. TO. DO!!!!”

Blank stare.

I started hysterical crying.  “What am I supposed to do?!?  Can’t you put me on another machine?”

“No.  And those are backed up, too.  We can’t just take someone off the table.”

“I understand that but, what am I supposed to do now?  WHAT AM I SUPPOSED TO DO!!!!!!!

I started freaking out.  A very nice old lady, who was just as upset about the situation as I was started yelling, “Give her my spot!  Give her my spot!  She has a child at home!  Can’t you get her in?”  It was very sweet but she had a different machine than me.

I sat back down in my chair, angry, resentful of the situation and helpless.  What was I supposed to do?  I really didn’t know.

Finally, the chief of radiation came out to talk to me (that should give you a clue as to the scene I must have been making).  I told her everything.  I told her how I tried to schedule these appointments months ago just to avoid this very situation.  I told her that I was assured that if my machine was running late, I would get a phone call so that I could make arrangements.  I told her that it was not fair that, with the cut in hours, the wait and my time on the table, I was being asked to choose between my finances, my health and my family.  “Which would  you choose?”  I asked her.  “Which would you choose?”

I was sobbing uncontrollably at this point.  She was very calm and patient with me.  She was doing her best to calm me down but all I wanted to hear was some sort of solution.  That wasn’t what was happening.  “We let you know when you make the appointment that you should leave an hour.”  “It’s been an HOUR AND A HALF AND YOU STILL HAVEN’T LET ME IN!!!!”  She couldn’t argue that.  She just apologized.  She gave me her card and told me to call her if there was a day that I was coming in where my schedule was tight or I needed to go home to my son.

15 minutes later, I was on the table.  I got home over an hour late, exhausted from my ordeal.

I have been through so much since my diagnosis.  I’ve cried.  I’ve yelled.  I’ve laughed.  But through it all, I think I’ve kept it pretty much together, considering the circumstances.  This was the first, and hopefully the only time where I really and truly lost it.  Uncontrollably.  The kind where you hear your voice and it’s like an out of body experience.  You hear yourself yelling.  You feel the vibrations in your chest.  But it’s outside of you.  Outside your control.

Part of me felt a little guilty for letting my emotions get the better of me rather than just finding a way to deal with the situation.  The other part of me feels like I was due for this kind of freak out.  That it’s strange that it hadn’t happened before.  Things have gone wrong in this process of having cancer.  But this was the first time I felt threatened and disrespected and that sent me into a rage faster than a bolt of lightening to the ground.

The next day, I came in at 10 am for my appointment.  “Hi, my name is Carrie and I have a 10:00 appointment.”  Suddenly, the door opens.  “Carrie!  Right this way!”  A man I had’t met, with a big smile on his face stretched out his arm, welcoming me inside.  As if they were waiting for me to come in.

There was this one time I lost my shit at the cancer center.  It totally paid off.

10 Things To Do With A Toddler While Undergoing Cancer Treatment

Oliver and his post-it art.

Oliver playing with oobleck.

Raising a toddler is hard.  They are moody, unpredictable, infuriating yet completely loveable and cuddly all at the same time.  You have to be on your feet at all times and ready for anything.  But what if being on your feet isn’t really an option?

While I was undergoing chemotherapy, I experienced extreme fatigue and weakness.  I had a lot of help from Ken, my family and friends but it was still important to me to raise my son and have private time.  While it was extremely challenging to do this, I came up with creative ways to keep him entertained that didn’t drain all of my energy.

1. Snuggles while watching TV:  I know, I know.  The American Academy of Pediatrics says it’s a no-no to let children under the age of two to watch television or use technology.  So do many of the parents in the area where I live.  “How much TV does your child watch?  Oh, we haven’t started yet.  Little Billy and I do art projects all day and take music classes 4 days a week.”  Well, screw this.  If you have cancer, TV can be your best friend.  Yes, we watched more television that I normally would like but it gave us time to snuggle and we talked about all the things we were watching.  And guess what?  He still can speak sentences, recite his ABCs, count to 20 and more.  No harm done.

2. Snuggles while reading books:  Reading books was always a great way to pass the time.  I couldn’t read books for myself because of the chemo brain but board books were fine.  Thank goodness for picture books, right?

3. The nap game: This is a real game that we made up!  I would bring Oliver to my bed where he could jump around and plop a bit.  Then I would pretend to fall asleep and he would do all sorts of silly things to wake me up.  He loved this game and it would entertain him for a good long time.

4. Coloring: If you are feeling well enough, you can both color at a table together.  But if sitting upright is not an option, get large pieces of paper and put them on the floor.  Take a pillow down with you and lay down while you both color on large sheets of paper.

5. Peek-a-boo:  Lay down, hide under a blanket, then pull the blanket off.  Peek-a-boo!!!!

6. The selfie game:  What do toddlers love more than anything in the world?  Themselves!!!!  Snuggle up with your smart phone and take selfies.  Then your toddler can look at them while you take a light doze.

7. Home movies: Take videos of your little one doing things like singing, dancing or being silly and let him watch it over and over again.

8. Sing songs with hand games:  Children love songs.  Oliver always wanted to hear Twinkle Twinkle or Open and Shut Them over and over again.  I would lay down, he would sit on my lap and we could sing together.

9. Oobleck:  Oobleck is messy fun that is easy to prepare.  All you need is corn starch and water.  The only downside to this is the clean up but it provides lots of entertainment for your little one while your head rests on the table.

10. Kisses:  This is the obvious one.  Oliver is a love bucket so just snuggling and kissing was entertainment for him.  And I was happy to oblige.  Somehow, nuzzling and snuggling him made me feel less sick.

What are some fun ideas you have for entertaining a toddler when you are feeling under the weather?

Cancer Cards

I have been wanting to write about these for the last week and I’m afraid that it’s old news now.  However, I think they are so fantastic, it’s worth it to me to share it in case you have missed them.

Los Angeles designer, Emily McDowell created these witty, sentimental and well thought out cards to give to someone who has been diagnosed with cancer.  As a cancer survivor herself, she has a unique perspective on what might lift someone’s spirits who might be going through the same experience.

It’s hard to know what to say when someone you know or love is diagnosed with cancer.  Forgo the usual Hallmark cards from your local Walgreens and send one of these.  I would have loved to get them!

Here are some of my favorites.*

*All photos are from slate.com.  Designed by Emily McDowell

Bits Of Happiness #10: Shampoo

This week I shampooed my hair for the first time since losing it back in October.  The hair between my fingers just feels so good!