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Saturday, July 18, 2015

Very Well Said

Lost in Translation after Cancer

by Suleika Jaouad
 
It took me a long time to be able to say I was a cancer patient.
Then, for a long time, I was only that: A cancer patient.
Now that I’m done with my treatment, I’m struggling to figure out who I am.
On paper, I am better: I no longer have cancer, and with every passing day I’m getting stronger.
The constant flood of doctor’s appointments, blood tests and phone calls from concerned family
and friends have trickled to a slow drip.
But off paper, I feel far from being a healthy 26-year-old woman.
 
My disease has left countless invisible imprints in its wake: infertility, premature menopause,
chronic fatigue and a weakened immune system.
And that’s just the short list.
Then there are the demons of depression and the fears of relapse that sneak into my head
just when I think I’ve gotten a grip.
The rattle of a cough in my chest.
A strange bruise on the back of my leg.
A missed call from my oncologist.
Each of these triggers rips me out of my fragile, new reality leaving me to wonder:
What happens if the cancer comes back?
Will I ever feel normal again?
And most daunting of all, how do I move forward with my life?
 
Writing about all of this has not come easily to me. It is hard not to speak in clichés about cancer.
It can be even harder not to feel as if I have to live up to those clichés.
I sometimes feel a deep sense of guilt for not doing a better job of making lemonade out of metaphorical lemons.
I know that I am one of the lucky ones, and I am deeply thankful to be alive.
In writing about the problems I am facing now, I worry about sounding ungrateful — or worse yet, insensitive to my friends in the cancer community who may never go into remission.
 These fears color the unexpected challenges that emerge during life after cancer, and can overwhelm the need to talk about them.
After all, I’m supposed to be better.
So why don’t I feel better?
 
When I finished my last cycle of chemotherapy friends and family congratulated me on being “done.”
What they couldn’t know was that in some ways the hardest part of my cancer experience began once the cancer was gone.
While in treatment, I had been surrounded by the world’s best army: my supportive family and friends and a brilliant medical team who had worked tirelessly to keep me alive.
The goal had been to cure the cancer.
Now that I had survived the “cut, poison, burn” of the disease, I no longer had the cavalry running after me.
Suddenly, I found myself standing dazed and alone in the rubble, wondering what had happened and where everyone had gone.
 
The inner scaffolding that had kept me strong and brave during my treatment had crumbled.
I no longer wanted to be anyone’s inspiration.
I’ve spent the last year of my life searching for the B.C. (before cancer) version of myself.
I’ve looked for her all over the city — the stores she used to frequent, the coffee shop where she had her first date, the apartment on Canal Street that she shared with 10 roommates her first summer out of college — but the more I look, the more I’m beginning to realize she no longer exists.
There is no going back to my old life.
The problem is I don’t know how to move forward either.
For many, the experience provides a renewed sense of life and purpose, but the task of rebuilding your life after something as devastating as cancer can also be a deeply disorienting and destabilizing one.
 
I have learned since the day of my diagnosis that cancer affects all of who we are.  There was no aspect of my life that wasn’t torn apart as my body was literally torn apart. In my case, after my treatment ended, I experienced mental health issues that were more intense and more debilitating than I’d ever experienced before in my life. This thing that we experience that is casually referred to as post-treatment depression is much more than just that. It has many facets: spiritual, psychological, social, medical and financial, among many other things.  I was diagnosed with chronic low-grade depression and anxiety caused in part by Tamoxifen, a medication that is intended to reduce the risk of developing breast cancer again and I will be taking for several years.

We like to think of the end of cancer treatment as the closing of a chapter, but what most people don’t realize is that the emotional struggle continues long after.  This time I’m finding that there are no protocols or discharge instructions, no roadmaps or 12-step plans to guide me back to the kingdom of the well.

The road back is going to be my own.
 

 

Tuesday, July 7, 2015

Last

I want to celebrate, jump up and down and even scream a little.
Except there is still a part of me that wants to hide in fear.

I completed my last chemo treatment.
My last of the year long Herceptin treatments.
Or technically, as Ryan says, it is not chemo.
It is a Monoclonal Antibody Targeted Therapy Treatment.
The nurses call it chemo, so I will too, it's easier.

It feels good.
It feels like a real milestone.
It has been a long time coming.
It has been a long process.
It took a lot to get here.
It feels like an accomplishment.

But somewhere in the back of my mind I am still scared.
Scared of it returning or spreading.
Scared of the side effects.
So I am afraid to celebrate.

As always, Ryan was right there by my side.
Flower in hand.
I got to ring "the bell".
Give my friends and nurses a hug and walk out the door.
It was a lot easier to walk out then it was to walk in.































Up next...
A trip to Disneyland!
I mean where else would you want to go when you have just become a cancer survivor?
The kids are super excited.
That makes me excited.


I have a heart scan the end of this month.
This fall I will have surgery.
A bilateral salpingo-oophorectomy and hysterectomy.
Hopefully the recovery won't be too bad and I will be able to travel for the holidays.

I hope to take 2016 off - no surgeries at all. 

In January 2017 I will start the reconstruction process.
That feels like forever away.

But for today I feel good.
Getting some energy back.
Adjusting to medication I am on for the next 5 years.
Trying to be happy, accept and live my new life.


I found this quote I really like and wanted to share it..








Wednesday, June 17, 2015

Cancerversary

Today is my Cancerversary.
 
One year.
52 weeks.
12 months.
365 days.
8766 hours.
525,949 minutes.
31,536,000 seconds.
 
The day I was diagnosed.
The day my life was changed.
 
Feels like a lifetime ago.
Feels like just yesterday, too.
 
A lot of things have happened during that time.
Things I wish I could forget.
Things I wish to remember  forever.
 
Today, I thought I would add to my “I have survived list.”
 
Here is my list from 2014
I have survived a needle punch biopsy.
I have survived the waiting.
I have survived "the call" with the diagnosis.
I have survived losing all my hair.
I have survived 2 MUGA Scans.
I have survived a Breast MRI.
I have survived PORT surgery.
I have survived 6 rounds of Taxotere, Cytoxan and Perjeta.
I have survived 23 weeks of Herceptin.
I have survived 6 Nuelasta shots.
I have survived 3 blood transfusions.
I have survived 10 blood draws.
I have survived 33 needle pokes.
I have survived a mammogram.
I have survived a Sentinel node biopsy with radioactive dye.
I have survived 2 guide hook wires procedure.
I have survived 2 major surgeries.
I have survived 5 days in the hospital, without my children.
I have survived the loss of my breast (and implant).
I have survived 16 days with a drain tube.
I have survived 32 prescriptions (not including over the counter and hospital meds).
I have survived 32 doctors and specialists appointments.
I have survived the countless hours in a waiting room, the side effects and the tears.
I have survived the "whys" and the "what ifs".
I have the scars, both emotional and physical, to prove I have SURVIVED!
 
Here is my list for 2015, so far.
I have survived mild lymphedema.
I have survived the loss of upper body strength.
I have survived 9 physical therapy sessions.
I have survived 1 CT Scan.
I have survived 4 guidance tattoos.
I have survived 2 MUGA Scans.
I have survived 31 rounds of radiation.
I have survived the blisters, peeling and loss of skin on half my chest.
I have survived 8 prescriptions.
I have survived 11 needle pokes.
I have survived 17 doctor appointments.
I have survived 27 additional weeks of Herceptin.
I have survived a weekend trip to InstaCare.
I have survived Shingles.
I am surviving with permanent numbness in my arm and chest.
I am surviving with a 5-10 year prescription of Tamoxifen.
I am surviving with the help of a monthly support group and wonderful social worker.
 
I AM SURVIVING.
I AM A SURVIVOR.
 

Sunday, June 14, 2015

This Is My June


We are in June.

June is a weird month for me.  June is “my” cancer month.

Actually is all started the weekend before my 35th birthday.

May 25  I had been pretty tired so Ryan decided to take all the kids for the Memorial Day weekend and go to the cabin while I stayed home to rest.  To be honest I wasn’t totally in love with the idea.  I was still keeping Alyssa pretty close; after all she had only been released from her two week hospital stay a few weeks earlier. But I did rest and got some things done around the house.  I was pretty excited when they finally all got home. 

May 25 was the night I decided to sit on the floor in the kid’s room so we could read a bedtime story.  Alyssa was trying to situate herself on my lap, around my big belly.  Abby or Kaden, I don’t remember any more which one, came up to try and tickle Alyssa.  She flung her head back, hitting my right breast.  I had immediate pain, a lot of pain. 

May 25 was when my first thought was, “Hey, I am almost nine months pregnant - of course that is going to hurt getting hit there.”  But what I couldn’t figure out was why there was a lump there.  Again, “I am almost nine months pregnant, weird things happened there when you’re this close to having a baby.”  I will just remember to ask my OB in a few weeks – no worries.

June 1 was a great birthday.  We went to Walmart and bought the kids a Slip-N-Slide.  They played on it most of the day.  Then we had my favorite ice cream cake from Dairy Queen.  I truly wasn’t giving the lump I found the week earlier a thought.

June 9 was my scheduled OB appointment – 38 weeks.  Baby is growing and everything is measuring right on.

June 9 I was still naïve and blissfully unaware.  I almost forgot to mention it to my OB.  She did a breast exam.  She said she wasn’t sure.  She asked how long it had been there.  I don’t know, I only found it a few weeks ago.  It wasn’t there when I had an exam in January.  She was hoping it was just a type of cyst or fluid filled pocket.  She was going to send me to a surgeon who would do an ultrasound and then we would go from there. 

June 9 was when my OB said she wanted me to get it taken care of before I had this baby.

June 12 was the day the surgeon was booked.  Her staff said they couldn’t get me in until mid-August – seriously?  I had my doctor call and tell them about my situation.  I should have realized this was something to worry about.  She saw me, on her lunch break.  She didn’t like what she was seeing on the ultrasound.  Time seemed precious and there wasn't any to spare. She scheduled me for a biopsy – the next day!

June 13 – Friday the 13th.  I am not really superstitious but maybe I should have been. 

June 13 is when I went to have a biopsy. Pain.  I have never had a biopsy before, I had no idea how painful  it was going to be.  At first they didn’t know how to do it because of me being almost nine months pregnant.  Typically they have you lay on your back while they do the procedure.  It was going to take between 30-60 minutes and I couldn’t lie on my back that long.  They tried to prop me on my side, but I wasn’t supported very well and I was straining my back just to stay still and in the right position.  Then they prepped the site and draped a cloth over me, kinda like in an OR, so I couldn’t really see anything.  I was glad about that.  After I got home I googled the needle thing they used.  It was called a punch biopsy – and yeah it feels just like its name.  If I would have seen them pushing it into my breast I probably would have fainted.  I believe they ended up taking 6 core samples.   First they numb the area with about 6 shots of local anesthesia.  Pain.  Then they wait a few minutes.  Then they take the samples.  The first few I did okay.  But by the 4th one I started shaking and feeling really dizzy – the anesthesia was starting to wear off and I could feel everything.   They still wanted 2 more.  I didn’t think I could take any more.  I was sweating like crazy.  I think they would have tried for another one but they looked at me and realized I wasn’t looking so good and stopped.  I laid there, crying, for a while to recover.  It also bled for some time so they wanted to make sure it would eventually clot on its own.  It did and I drove myself home.  Home to wait.  The surgeon would take it to pathology that day and 3 days later she would call me, not including the weekend of course.  LONGEST. WEEKEND. EVER!

June 17 was a Tuesday.

June 17 I got a call.

June 17 I told myself the first sentence from my doctor was the most important.  If she asked me to come into the office to talk it was not good news, because who would tell you over the phone you have cancer. 

“Kim I got the test results”

Phew she didn’t want to see me. Okay nothing serious.

“It came back positive, Kim you have cancer.”

June 17 was the day I sat on my bed crying.  Not know anything, feeling lost and scared. My world stood still.  I tried to call my husband at work, but he was with clients and couldn’t answer his phone.   I tried my mom, no answer either. 

June 17 it's the day I made a lot of phone calls and had to tell people I had cancer. It's also the day I couldn't make any more phone calls and asked others to please tell family and friends for me because I just couldn't do one. more. call.

June 19 was the day I met my oncologist.  MY ONCOLOGYIST.  I was meeting an oncologist the day before having a baby.  He apologized he was having to see me. He was nice.  He saw me after hours; it was the only time he could fit me in.  I think we were there for a long time.  I left feeling numb, overwhelmed and scared, but I was not empty handed.  I got 5 prescriptions I needed to get filled before chemo started.

June 20 I had a beautiful, healthy 9 1/2 pound baby boy.  My saving grace, Gage.

June 21 was the day I went home to be with my family. I wanted to live in ignorance for one week.  JUST ONE WEEK.  Tons of doctors were calling to set up scans, blood draws, test and appointments.  I ignored them.  I just wanted one “normal” week with my baby.  I didn’t think that was too much to ask.

June 30 is when I didn't even listen to half of what she said. My nurse navigator is what her title was.  Someone who told me about the treatment plan that my oncologist thought would give me the best chance for survival.  She explained the chemo, the potential side effects, the prescriptions, more side effects, when to call, and when to go to the ER.   I cried.  She handed me papers to help me remember, I couldn’t see them through the tears.   At some point, she asked if I had any questions. I couldn’t talk. 

June 30 was the day my husband told our kids their mother had cancer.  I remember I didn’t really say anything for fear of bawling in front of them. We read a book and tried to help the kids understand.  I am not sure how anyone could understand what was about to take place.

This is June. This is what my June was.

23 days.

23 days from just finding a lump to “you have cancer.”

Just 23 days.

It's not that long.

It felt like a lifetime.

While I know the June of 2015 is not the same as June of 2014, it's still a hard month for me. I know there will be no ultrasounds or biopsies or having to hear you have cancer again this month. Somehow this June has felt like I am back to that June.

It's a hard month for me emotionally.

If I seem distant or quiet or look or sad or tired, know that I am.

Because this is my June.

But is also carries over into July.

July 1 was the day I had a Breast MRI.  Trying to lay still while everything is hanging down.  Not to mention I was very engorged from suddenly stopping breast feeding because they injected dye into me for the procedure.

July 1 the day I scheduled my MRI for the late morning so I could breast feed my baby one last time.  My last baby I will ever nurse.  I had tried to come to terms with everything that would be happening to me but this just seemed so unfair.  I felt robbed.

July 2 was the day of my port surgery. I struggled with recovery.  My chest was in a lot of pain.  Every time I moved I could feel the weight of the device implanted in my chest to make getting my year of chemo treatments easier.  I couldn’t pick up my baby, I couldn’t sleep, I couldn’t use my left arm.

July 3 was the first of many blood draws and my first MUGA scan, to get a baseline for my heart.  One of the chemo drugs has the potential side effect of damaging the heart.  I remember how bad it hurt because they accessed my new port.  Not even 24 hours out of surgery.

July 4 a holiday.  For me and for the doctors.  So I got to spend it with my family.  Unfortunately I was full of anxiety waiting for Monday.  The first day of chemotherapy treatments.  Treatments that would be every week for 18 weeks then every 3 weeks for a year.

July 7 the day I didn’t want to get out of bed.  I would have given just about anything to stay there.  I didn’t want to leave. Leave my little baby and go sit in an infusion room for 6 hours,  away from him.  Not being his mother.  Not taking care of him.  Not really a choice though. I drove myself to the hospital.  I could have just kept driving – to anywhere.  When I got there I couldn’t get out of the car.  I just sat there crying. Now I was late.  I better go.  I got as far as the hospital doors.  I sat down on the bench and cried some more.  That is when Ryan showed up, with a rose, and held my hand as we walked in together. 



 

Thursday, June 4, 2015

The Side Effect I Wasn't Warned About

Sorry I don't feel like writing much, so I will let someone else.
 
 
Posted by Brandie185
March 11, 2015
 
When I learned I had cancer, there was a lot of information thrown at me.
As I learned more about my cancer and decided on a treatment path,
it was time to go over all the side effects, the what-to-expects.
 
The first hurdle was surgery.
I was told possible complications, I was told about healing time,
and expected hospital stay.
From there, it was chemo time.
The chemo side effects were so serious that for the three chemo drugs I took,
not only did I get a list of side effects and what to expect,
I had to sign a paper saying I was told the side effects, the possible complications, 
and that I was comfortable receiving said drugs.
Next up, radiation.
Again, a list of side effects.
A list of what to expect.
A nurse going over all of it with me.
How to care for the radiated skin, things to watch for, things that were normal,
things that I should call for if happened.
Side effects on top of side effects on top of side effects.
Some minor, some major, some barely noticeable by me,
others impairing my quality of life.
 
Except, there was one side effect no one warned me about.
No one prepped me for.
I never expected it in a million years.
A side effect of having cancer is making friends with people who
have cancer and having to grieve for the friends who die.
While friendship is a good side effect, and one I never expected,
grief is the worst side effect I've faced so far.
As I see some pretty wonderful people die from cancer, my heart shatters all over again.
And I rebuild it the best I can.
When I was first diagnosed, I was very active in breast cancer groups on-line.
I tried a couple support groups.
One wasn't a good fit me, but another one was.
It was good.
And then a friend passed away.
And another passed away.
And another.
And another.
And another.
Jenny, Susan, Rachel, Jada, Barb, Dave ... all friends who died from cancer.
It was too much.
It was just too much for me.
I realize this is quite selfish on my part.
Sometimes I have to be selfish though.
And so I pulled away.
I pulled away from chats I had participated in.
I pulled away from some friends.
I pulled back and tried to bury my head in the sand.
To pretend that I wouldn't lose anyone else to cancer.
If only.
If only it were that simple.
In the last few weeks, several more people have died.
My heart has shattered a few more times.
Another friend received bad news: treatment not working, time for the next one.
I have cried and been angry.
I have shouted.
I have whined that life is not f*#king fair.
I have woken up, and done what needs to be done, all the while wanting
to crawl into bed and just hide away for a while.
Even when I try to build walls, to protect myself, life ticks on.
It keeps going.
Friendships still get made.
Good moments are celebrated.
And sad moments still happen.
I wasn't told about this.
I wasn't warned.
I'm not sure someone can be warned though.
This is life: it is comprised of birth and death and the time in between.
Some get a lot of time in between and some people are robbed of time.
And I can't try to hide my heart away.
I can't try to protect it.
My life is richer and better because of the friendships I have.
I've learned things from them.
I carry some of their words in my heart.
They have helped me on bad days and celebrated with me on the good.
I hope I was able to do the same for them.
It doesn't make my life better to pull away, to hide, to try to protect myself.
I would much rather have wonderful friends in my life.
Yes, it is hard to say good-bye to them when the time comes.
Yes, my heart is heavy with loss.
Yes, I will cry and be angry and sad and upset and pissed off.
But I can't hide away and pretend like nothing bad will happen.
Because it does happen.
And I can't let fear hold me back.
As Helen Keller said, I would rather walk with a friend in the dark, than alone in the light.


Sunday, May 24, 2015

Hard Week

This week has been a hard week for me.
Not physically, but emotionally.

A women I met a few months ago at a Pink Party, a party for those surviving with cancer, passed away.
She was 55 with 4 children. 
When we spoke at the party she told me she had been battling breast cancer for years and now it had spread - to multiple places including her brain. 
We talked on Facebook a few times, she gave me a lot of tips to help with various side effects.
Her goal was to see her youngest child graduate high school.
She passed away 5 days before his ceremony.

I have what she had.

Then on Tuesday I found out that a girl I went to high school with had passed away.
I am sad to say I didn't really know her, just knew who she was.
From reading her blog - she seemed to be an amazing mother, wife and friend.
She had been battling skin cancer for 8 years.
She has 3 young kids.

We are the same age.

This is from her blog from a few years ago.

victory
Wednesday, May 25, 2011

"You have cancer."
And just like that you are drafted into a conflict you would never sign up for.
Women and children and old men, everyone is eligible.

In the trenches we suddenly find ourselves.
The cancer hospital.
Waiting for a blood draw on a bench with worn-out people in the same boat.
Everyone has a story in their eyes.

We are a brave bunch. Even if it's because we have to be, we are.

We go into treatments the picture of health. Come out disfigured and close to death.

Everyone wants to help, the army of support, but we are the ones who have to stand up and take the blows.
Dr.s give us their best weapons and we hope they work.

The enemy is terrible.
Win or loose, we fight hard.
For the worthy cause of more time on this beautiful earth.
For every happiness we have experienced.
For everything we haven't done yet.
We fight for the things we love.
For the people we love.


My heart aches for their families.
That is why I keep fighting.
Fighting for those I love.
So hopefully my story is different.
 

Sunday, May 10, 2015

A Mother's Fight


I wanted to say Happy Mother’s Day to all the wonderful women in my life.
From my own mother to my step-mother, my mother-in-laws, sister and sisters-in-laws, and grandmas, aunts and friends.
Yes, it is after 10pm, but better late than never.

One year ago was honestly one of the best Mothers days I have ever had.  
There was no fancy breakfast in bed, no flowers, not even a hint of chocolate covered strawberries waiting.

It was because Alyssa had just been released from her 2 week stay at Primary Children's Hospital and she was doing well. 
We celebrated her homecoming, Abigail's 8th birthday and Mother’s Day all on the same day. 
It was so wonderful to be home and all together again. 
We had just come through a rough storm and were finally starting to breathe a sigh of relief. 
I was feeling great and in just over a month would be welcoming another little guy in to the family.  
Who could have imagined another storm was waiting for us. 
One that would forever change me. And my family.

I am so grateful for all my family, friends, neighbors and strangers who helped out but mostly for my mother. 
I don't know what I would have done without her. 
I could never sum up into words everything she has done for me of how grateful I am for her.
The more I look back on my childhood, I am amazing by her.
Her strength, selflessness and the sacrifices she made.
She has shown me true unconditional love.
She has taught me how to be a better person and mother.

Each Mother's Day (as well as most holidays) has a different meaning for me now.
I am grateful for each one.
I am grateful I am here to celebrate them.

Happy Mother's Day!

 

A Mother's Fight

Written by Mary Darling Montero 
(Psychotherapist, writer, mother and cancer survivor)

This Mother's Day falls just before my two-year anniversary of being diagnosed with an aggressive form of early-stage, invasive breast cancer. Anniversaries can trigger traumatic memories, and as mine approaches I catch myself reliving pieces of the day I was diagnosed. Breast cancer would permeate every layer of my identity, shifting the way I felt as a wife, daughter, sister and friend, but that day it was my sense of motherhood that rocked me to my core.

Elizabeth Stone famously said: "Making the decision to have a child -- it is momentous. It is to decide forever to have your heart go walking around outside your body." I can't think of a better way to express how having children multiplies your sense of vulnerability. When I was diagnosed, my first thoughts were about my 1- and 2 year-old children: Will I be able to take care of them during treatment? Will I survive? Will they grow up without me?

That last question took my breath away and woke me up in the middle of the night with a racing heart. It sent me into my closet where I sat on the floor and cried, and into my kids' rooms while they slept, where I curled up beside them and fervently prayed.
It was fear with the power to paralyze me, yet my instinct to fight for my kids was stronger than that fear. For me, "fighting cancer" meant keeping my role in my kids' daily lives as steady as possible. It meant using my last reserves of energy to attend an event at my son's school or play with my daughter at the park.

When I was in treatment, our babysitter sent me a cartoon of a bald woman wearing a headscarf and walking with purpose while clutching the hand of a small child and carrying both a crying baby and a grocery bag. "This reminds me of you!" she said.
Of course, I wasn't that woman all the time. Anybody going through cancer treatment and surgeries feels defeated at times, and even those of us who have a relatively easy time with side effects succumb to sick days spent entirely in bed. But I could relate to the woman in that cartoon. She was busy with endless appointments, tired from chemo, and afraid of the future, but she shook off feeling sorry for herself, pulled herself up, and took care of her kids.

She was a woman who would forever be part of a sisterhood of women who live with a new sense of wonder for the small bodies housing pieces of their hearts -- women who watch their children grow with a new reverence for the passage of time.
I wish a Happy Mother's Day to every mother who fights for her kids in the face of unimaginable challenges.
May our fight always be stronger than our fear.