My Twist on Cancer

I was asked to write an entry about my experience with cancer for Twist Out Cancer, an online community for cancer fighters, survivors and supporters.   Some of my words may sound familiar from past entries but know that those words resound in my everyday life.  I was inspired this week by a simple yet profound conversation I had with a friend over fine cheeses and tasty red wine.  I have decided to continue to blog. If no one reads it, it's okay.  Because I have learned I enjoy writing and it helps me release my "grey" thoughts. It keeps me grounded. It keeps my head above water. And my entries may be sporadic but I am discovering and exposing a new creative outlet of mine.  Below are the cliff notes of my journey:

I am a survivor. That has a nice little ring to it doesn’t it?! On the eve of my first follow-up CT-scan post chemo, I am healthy, young and a hopeful Hodgkin’s Lymphoma Survivor. In May 2011, I learned that the start of my 31 years of life would be filled with cancer.  From the moment of being told I had cancer, to the 6 months of chemotherapy, and to the ever so interesting life of post treatment and the ongoing phase of recovery, the feeling of shock and disbelief never left.  As a high-energy, constant life on the go kind of gal that I am that is completely devoted to family, friends and my career, I never let cancer take control of my life.  I worked full-time throughout treatment, I lived my life like a 31 year old should. I laughed, I danced, and I continued to fight everyday. I blogged about my journey and found that it was a great release and allowed me to keep my friends and family updated.  In my everyday life, I lived in the black and white.  There was never a doubt that I wasn’t going to beat cancer.  I did what I had to do to survive.  But as I blogged, it was my moment to live in the grey.  I exposed my fears, my uncertainties, but managed to showed people I was strong. My low moments brought on tears, hopelessness, fears, isolation and the feeling of being lost.  I soon learned that greatest gift that was ever given to me was cancer.  I know that is crazy to say but I have learned so much more than some may learn in their lifetime.  I was given the opportunity to evaluate what was important to me in life.  I saw different layers of beauty in people, my world and my soul.  My family and friends lifted me up everyday.  I made a promise to myself to slow down and smell the roses.  I take a moment everyday to look at the sky and absorb the beauty and the ever-changing masterpiece the earth creates everyday.  I close my eyes and take deep breaths and savor each breath that enters and escapes my body.  I am alive today.  I am real. I am grateful and loved. I am a real human.  And I couldn’t ask for anything more.

Ready. Set. Go...

The past few days I have felt my world has come crashing down on me.  I know it’s been awhile since I have blogged but to be honest I have been living in a dream the past 8 weeks and absorbing the world around me. When 2012 arrived, a surge of emotions hit me.  Tears filled my eyes because 2011 was finally over.  Cancer was finally over. And just recently, I have seen my future unfold and the possibilities that lie ahead.

The past weeks I have had a hard time believing everything that I had been through.  I was shocked when I heard the words you have cancer and didn’t believe it.  For the next 6 months thereafter, I didn’t believe I was going through the process of treatment and chemotherapy.  For the weeks after my last drop of chemo, I couldn’t believe that I went through the journey of fighting cancer.  2011 was just a disaster to me. I look back at 2011 and around this time, a year ago, my symptoms were beginning.  And I had no clue that cancer had invaded my body.  All that joint pain and muscle aches. What a difference a year makes.  I just can’t believe it.

I had anticipated what the following chapter of survivorship would be like and found that it made me anxious.  But now I am in survivorship, I think the grieving process has begun its cycle once again as it did when my father passed away, when I was diagnosed and now, the afterlife of cancer treatment.  I’m past denial and shock once again, I think.  And perhaps I am at the stage of pain and guilt in this survivorship world.  I sometimes feel guilty that I can say I am survivor.  I am in pain because of the fears the may lie ahead.  And it is not fair of me to think that way.  I have not really had the thought of relapse in my head.  And for some strange reason, that thought of relapse has occupied my mind most of the past days.  I had a conversation with a close friend and she expressed her worries about relapse and I was positive and optimistic that the chances were slim.  And yes they are, but why all of a sudden has it occupied my mind.  Is it because my fertility will be tested tomorrow?  Is it because the financial advisor I met with said life insurance won’t be easy for me to get?  Is it because I had a freak out moment this past weekend when I felt a small nodule in my neck? These occurrences have made this dream turn into a reality. What about the thought of dating again and introducing myself all over when I am currently learning the new me?  In all reality I haven’t changed but my view on life is different.  But I am still sorting out the acceptance of my new image, the scars that lie on my chest that serve as a constant reminder. I know it’s normal to feel this way and it is expected. Because all of this is such a messed up roller coaster of proud moments and happiness to low points of fear and worries.  I read many stories of survivorship and relapse and how you shouldn’t live in the life of fear.  That life of fear lets cancer win.  And I know I won’t let cancer and fears take over because I am too positive of a person, but lets be real, I can have this moment of feeling like, (and I stress LIKE), I am surrendering to the world of cancer (although I am not!).  I’m not looking for support by any means.  I am just freeing these rapid thoughts in my head so I can move on to the next shining moment I will see and to the happiness that it will bring.  I just need to breathe.  I need to draw air and expel it from the lungs.  I need to recognize and acknowlege these fears and thoughts and let it leave my mind.  I am only human.  With natural thoughts and real emotions that are alive and awake.  I am a real human alive today.

Normal.

It's been 8 days since my last round of chemo. I am well, but tired.  I was lucky to enjoy Thanksgiving.  Thanksgiving has a whole new meaning.  It really is Thanksgiving to me everyday.  My bro-in-law opened up a bottle of bubbly at TG dinner and my sister gave a toast.  Of course I got teary eyed.  It's all still so surreal to me.  That I had cancer.  That I went through 6 months of chemo.  I have been "normal" the past 6 months.  Working, living, having fun.  But I have been in a fog the past month.  Every second was being counted down to that final day of chemo.  That was all that occupied my mind.  A lot people have asked "ok, so now you are normal right". Well it's doesn't happen. Just. Like. That. Some would say I was never normal (Minos!). But  it will take 4-6 weeks for my counts (neutrophils, white blood cells) to bounce back from 0.1 to  8.0 to 11.0 range.  I have become anemic because of chemo.  My hair should be slowly growing back.  I was lucky not to lose all of the hair on my head.  It just turned into baby hair.  I am actually looking forward to all the fun hairstyles I will rock. And all the tiny victories that lie ahead (thanks Ali).  Cancer is not a marathon.  It's an ultramarathon. I have many milestones ahead of me.

Before chemo, I made a mixed CD for my medical team at Northwestern.  And I titled it Chemolicious.  It was a soundtrack of my Chemo and Cancer journey.  I love music.  It really just makes my day complete.  And I love dancing.  Dancing in my car, the shower, in my bedroom, at the bars, in my head.  Everywhere.  And of course I danced at my last chemo.  I captured video of the last Adrimyacin, the last Bleomyacin, Vinblastine and Dacarbazine.  And I captured the moment the IV machine beeped and when I was officially done.  I had so much adrenaline running through me.  I was so excited.  So happy. I didn't shed any tears.  After I was done I walked out to the lobby and  I had so much excitement built up in my spirit.  But when I went into the lobby, and saw everyone, I felt like I was seeing people with a different set of eyes. I saw all these “sick” people.  They seemed to look “sicker” than before.  Was it because I have walked out with my blinders on all the time and was just going through the routine? I'm not sure but all I know is that I felt sad.  I felt upset to see so many people in the waiting room, waiting for results, infusion, fluids, etc. I was reminded how much I hate cancer and what it does to people and their families.  I felt it was unfair to celebrate.  My voice and spirit stayed silent.  The adrenaline wore off as the side effects kicked in.  But I felt so different.  Because I knew I was done with chemo.  I think things will start sinking in next week.  When I don't have to go in for chemo.  Maybe I will be more emotional next week.  Who knows.  I see Dr. Gordon on December 21. The next 2 years will be appointments with him, blood work and CT scans.  I hope each visit will bring positive news.  I know it will.


Here is my mixed CD.

And here is my final video...

6 months

It’s been a long and grueling 6 months.  Just in case you didn’t know, my scheduled final round of chemo was postponed because of a fever I had a few weeks back which delayed round 11 therefore delaying my final treatment.  I was pretty devastated when I was told chemo would be postponed.  I have had November 16 stamped in my brain.  I was crushed.  I didn’t want to have treatment the week of Thanksgiving.  I was looking forward to feeling good and savoring every single bite at Thanksgiving dinner.  But now I am scheduled for chemo November 21^st.  Three days before Turkey day.  Yes, I am thankful that I will be done.  I just hope that my taste buds aren’t too whacked out for dinner.

I have found this part of the journey to be rather difficult.  This part meaning the preparation for the final round.  Mentally.    I anticipate the world of survivorship.  Yes I am surviving every day but there is a whole new meaning to this stage of survivorship. Chemo will no longer be in my routine.  And my body, my mind and my spirit will be mending.  I am aware of what survivorship means to me but I don’t know what it will bring me.  Ever since I heard the words ”You have cancer”, I had to let go of “what if’s” and “what’s next”  because I had to learn quickly to  take each day at time and focus on surviving each day.  And not waste energy on trying to rationalize everything and why things were happening or not happening for that matter.  I want you to know that I am nervous for what lies ahead, no doubt.  Maybe even scared.  But I know now that I extremely aware of my feelings, my emotions, my fears, the things that bring me joy and happiness more now than ever.   I am aware that I will cry for no reason any given time.  I am aware that I will smile while thinking of something or someone that made me happy.  There is no guide on how to survive survivorship.  But with the continued support from friends and family I am sure I will get through this.  Because of all of you, you gave me strength, you picked me up when I was weak, you made me laugh, you let me cry, you let me be irritable, annoyed and frustrated, you made me live harder everyday and you let me be me.  The next two years will be filled with follow up appointments, CT scans, blood tests, cardiology appointments.  I will have happiness, laughter, love, fears, sadness, frustrations. I will have hair growth, blood running through my vessels without cancer, new and much more white blood cells, new and many more neutrophils, scars, and a spirit that is so alive.  I have been through so much the past 6 months.  Six months may not seem long but it feels like eternity for me.  In 6 months, you may be getting married, graduating from school, going on a trip, starting a new job, or having a baby.  Let each day of the next 6 months ground you, humble you.  Be alive every day going forward. Because that‘s what I learned to do these past 6 months.  

Breaking Up is Hard to Do

Dear Chemo,

You are a special thing to me. The first time I met you scared me.  You brought tears to my eyes and fear in my spirit. But then I got to know you on a deeper level. Past that superficial shit. I saw that you really do have a good heart and you mean well.  I realized you were my sweet poison throughout this relationship.  You took my cancer away. And I am forever grateful that I am cancer free today because of you. BUT, we had to make sure cancer didn’t come back so I had to see you more. I kept saying I can move on without you but I still needed you. You gave me all sorts of issues.  You wore me out. You gave me fevers, chills, muscle aches, nausea, metallic taste and hiccups!  You backed my shit up, if you get what I’m saying. I get to see you tomorrow.  You get to put me on this wicked trip for a few days. But I will be ready for that last trip on November 16th. It will be the final time you get into my blood and circulate your sweet poison through every vessel. And on that day, I bid you goodbye. I really don’t want to see you anymore after that.  I’m sorry but it must be that way.  It’s you, not me.

All My Love,

Noreen 

Ok. So I know it’s premature.  But I can’t wait to be done!!!!!  And at least I didn't do it over texting. I’m so over this.  I came across an interesting article about cancer and real people relationships.  Getting dumped after a diagnosis has got to be rough!  Now I didn't get dumped but a certain fellow I was interested in disappeared after I told him about my diagnosis.  I'm glad he did!

http://today.msnbc.msn.com/id/44709926/ns/today-today_health/t/cancer-kiss-off-getting-dumped-after-diagnosis/#.TqQvSpw7doY

 I am also nervous and anxious for the aftermath. Survivorship. Recovery. Also thoughts of mourning this journey.  It's been so constant the past 6 months.  I find myself thinking a lot about my father.  Remembering the days, weeks, and months after his death.  I was circling back to how I felt. And I know it's crazy, but it's sort of the same feelings.   We all knew my father's time on this earth was short but I still didn't know the day he was going to leave us.  And I know I have 2 more weeks of treatment but I do anticipate similar emotions.  I try to stop my mind from wandering that way but I can't help it.  Everyday, I have been dreaming about the last day of chemo.  Again, I'm thinking way ahead.  Even though it's two weeks ahead and I'm not focusing on one day at a time but I'm anxious.  It’s another milestone in this journey.  Another reminder that I need to put all these life lessons I’ve learned into play.  I’ve been asked several times “Now that you have gone through this, what will you do different?” I don’t quite exactly have the answer to that.  I have an idea of how I want to live my life, how I want to be good to my body, to stop being wishy washy about things and take that step into doing what I’m passionate about.  I'm anxious to learning a new me, a new body that will recover and change everyday. I tried meditation for the first time.  I’m not exactly into it just yet but I am willing to try a few more times.  I will try things.  I will open my mind more and more.  As I was creeping on facebook I saw a friend post a picture of this saying.  So I leave you with these words.  A reminder.  A reminder that I will probably read every week.  (And I leave you with a song of course, my f-u cancer song.)

"This is your life. Do what you love, and do it often.  If you don’t like something, change it. If you don’t like your job, quit. If you don’t have enough time, stop watching TV.  If you are looking for the love of your life, stop; they will be waiting for you when you start doing the things you love.  Stop overanalyzing,  life is simple.  All emotions are beautiful.  When you eat, appreciate every last bite.  Open your mind, arms, and heart to new things and people, we are united in our differences.  Ask the next person you see what their passion is, and share your inspiring dream with them. Travel often; getting lost will help you find yourself. Some opportunities only come once, seize them.  Life is about the people you meet and the things you create with them so go out and start creating.  Live your dream and share your passion.  Life is short."

Dear Cancer, Why do you do the things you do?

Ten down, two more to go.  What have I learned the past few weeks? Well, quite a bit. I have seen so many commercials about cancer and cancer awareness.  I have seen sitcoms joking about cancer. When you hear the word cancer, what's the first thing you think of?  "Damn, you are going to die" or "Damn, that sucks, now lets beat it!" Yes, cancer kills. Yes, it is a bitch. And yes I am lucky that I got the best cancer to have because of the outcomes and promising success rate. But I cant help the fact that I get mad about some of these negative connotations associated with cancer. It's not always like what you see on TV or hear about so and so. Cancer doesn't discriminate.  It can happen to any of us.  We can choose to fight and be positive or we can choose to let it take over our lives.  We can listen to our bodies and make sure our doctors are listening to what we are saying. Every cancer is different, every person is different, and every person responds to their treatment differently. And that does affect the mind and spirit. No doubt, I  have had my ups and downs. But the one thing that has kept me strong and going is that I surround myself with positive and supportive people. I am a member of this new cancer world, my family and friends are part of this cancer world as caregivers and supporters. I have coworkers, friends, family that are currently fighting, waiting for that one day to hear "You are cancer free".  One of my coworkers had a scare last week.  Her doctors thought they saw cancer activity on her liver.  She is a breast cancer survivor.  All week, her world was turned upside down.  And then she hears "it's not cancer". My friend's nodule in his lung grew 1mm. 1 freaking mm!  Now they are discussing how much chemo he should get.  This is the third time down that road for him. Another coworker, had a "weird biopsy".  And is still going through this wait and see game.  And finally, a friend has her BIG SCAN tomorrow.  I am praying for good news because I really hate cancer.

Earlier this month, we lost Steve Jobs.  Earlier this week we learned Guiliana Rancic has early stages of breast cancer.  She got an early mammogram because her fertility doctor asked her to.  She was kicking and screaming because she felt she didn't need it. So I flash back. About 2 years ago I was at an Imerman Angels benefit.  I vividly remembering a survivor speak out and saying she had Hodgkin's Lymphoma.  Not knowing what kind of cancer that was I researched it later that week. And a year ago I was going about doing my thing, not knowing cancer had invaded my body.  I traveled, went to New York and Vegas living life.  I was telling my coworker "Suck it Cancer" as she ran past me in the Chicago Marathon last year. And I had cancer! It's crazy to me.  But then things started to change with my body and I noticed.  And I kept telling my doctor my symptoms.  I was reminded that I had said jokingly that I had cancer when I started to notice all the red bumps on my shin.  Did I think that was really going to happen?!  Absolutely not.  Like I said this disease does not discriminate.  It can happen to any of us anytime.  And that's why it's so important to get physicals and see your doctor on a regular basis.   I am lucky that I am in the healthcare profession and act as an advocate for many athletes so I know what to look for, but one thing people in my profession forget to do is take care of their own aches and pains.   And if I had never said to my doctor can you check for Rheumatoid Arthritis, I don't know how long it would have been till I found out that I had cancer.  By me saying, "Listen, my body doesn't feel right, can you just check for RA", we found elevated numbers in my blood which then I was referred to a specialist who had found my cancer.  It scares me sometimes.  What if I wasn't as persistent, where would I be now?  But I was persistent.  And it's 5 months later and I am almost done!  My round about point to this post is that Cancer is scary.  But it doesn't have to be.  Because we need to educate, be proactive, see your doctor on a regular basis, donate to cancer research and start associating cancer with a positive. Cancer has taught me several things and yes it has taken parts of my life that I once had.  But now I look forward to starting a new life with of all these lessons I have learned.  And I can't wait to live the life I WANT with the ENERGY that I once had and all the KNOWLEDGE that I have now gained.

Here are some videos of chemo day...See it's not that scary!

And....

http://www.facebook.com/photo.php?v=883279024791&set=vb.20002253&type=2&theater

50/50

I have had this post brewing in my head for the past week and I am now just getting to it.  I will make an attempt here to review the flick 50/50, you know, the one with Seth Rogen and Joseph Gordon-Levitt.  I will try not to spoil anything for those who have not seen this movie.  But if you haven’t seen it yet, you better see it this weekend!

This movie is based on a true story.  As a young adult that has entered the cancer world, unwanted, I connected to this movie on so many different levels.  Before the movie even started I was in the theater with cancer survivors, fighters and supporters.  I was lucky to get a free advance screening ticket and was accompanied by my friend Deb.  Johnny Imerman spoke briefly as well as others from LLS.  The energy was amazing. 

The moment Joseph’s character gets diagnosed everything around him is muted.  The way the doctor spoke of his diagnosis was nothing like that for me. Gratitude point #1: so lucky to have Northwestern as my medical provider. Dr. Gordon, Betsey, Beth, Celia and Dr. Hseih, you are all amazing! 

He then walks down the hallways and sees only sick people. Older people. Sadness.  I vividly remember walking through the chemo side of the 21^st floor and seeing older sick people.  I felt there was no life anywhere.  I told myself that whenever I would go to chemo, I would smile and bring energy.  I always felt I was the youngest one in the waiting area.  People looking at me and saying “she’s too young”…at least that was what played in repeat in my head, me thinking that people were saying such things.

As he told friends and family, everyone had different reactions.  This is very true.  I have learned a lot about others and how they deal with news of this magnitude.  I have learned a lot about myself.  I have seen the true colors of people.  I have been touched by the amount of support and love.  I have reflected and closed a few chapters that were lingering in my life.  I have said take care to people I know I will no longer talk to and they will no longer be in my life. I have opened new doors and started new chapters. I’m entering a new journey.  A rebirth. But if I was on the other side and if my best friend told me she had cancer, I really don’t know how I would react.  It’s hard.  It’s hard to even think that would happen to her.  And I would never want any of my friends to go through what I have gone through.  

He “ignores” his mom.  Now, I wouldn’t say I ignore my mom but it’s a tricky little thing.  He (and I) have been independent for years.  He didn’t rely too heavily on his mom.  He said he would get annoyed.  And yes, I got annoyed.  But what it comes down to is that a mom will be a mom.  She will love you, worry about you, care for you, support you, take away all the pain and hurt in the world away if she could.  And I couldn’t ask for anything more.  My mom has been superwomen to me throughout this journey.  She makes my heart smile even when my face can’t seem to smile. Gratitude and love to you mom!

He has a breakdown.  This part gets me.  Because I had a breakdown a few weeks prior to seeing the movie. It’s so hard to explain all the emotions but you do get sick of being sick!  Then the day of his surgery…well, his inner child surfaces that we all have inside of us.  We need our mommy and daddy. We need their support.  He tells his parents he loves them.  I did cry hard at this part because I so wanted to see my dad.  I miss him.  I wanted to tell him that I’m doing good and that mom was taking such good care of me just as she did for him. 

I will no longer go into the movie because I want you to see it!  And none of my friends have used my cancer to get them some play, if you know what I mean.  But I do want you to know I am feeling better mentally.  I have stayed busy which is a distraction.  But I have been able to do things I enjoy and spend time with friends and family.  Just a few medical updates as well. I had my pulmonary function test last week.  My lung health is looking good!  The Bleomycin (one of the chemo drugs) has not caused damage to my lungs and it’s breathing capacity.  I had my CT scan as well of my chest.  I know my PET scan was clear so I knew my cancer was gone, but I was still nervous.  I didn’t want something crazy popping up.  Dr. Gordon called me and I have a clean scan!  That’s 2 clean scans within 2 months.  I am almost done!  Chemo #9 awaits me.  Three more to go! I’ll keep on fighting the good fight!