Take a Second...

and reflect.
Take a second and breathe.
Take a moment and be grateful for what you have.
Take a moment and love and be loved.
Take a moment and appreciate the life you have.

It's a sad time.  A UIC Soccer athlete who played for the Flames when I was a student was diagnosed with ALS at the age of 28 in November, 2010.  18 months later, on April 10, 2012 he passed away, months away from his 30th birthday. I last saw Patrick at his fundraiser in April 2011.  Not knowing I had cancer at that time, I saw a brave man that exuded positivity and grace. Patrick was in a motorized wheel chair and his body and its' function had began to deteriorate.  He had no control of his speech and his movement.  But he still had his mind, his will power and the sparkle and charm in his eyes. He was always, ALWAYS, a kind person when we spoke in the past during our college years and even in April when I last saw him.  It's unfortunate that he was dealt a shitty hand.  To be diagnosed with an incurable disease at such a young age is awful.  He was the youngest to be diagnosed in his home town in New Mexico where he spent the rest of his twenties.  My heart goes out to his family and his close friends.    The message I want to be taken away from this is that our life is very precious.  My hate for disease is greater now more than ever.  But I won't let that get in the way of living my life.  Patrick was an inspiration.  He knew his time was short after being diagnosed but he educated the world about ALS, his fight and his spirit. I didn't know him as well as others but I did know that he was loved by many. His shining energy glistened every second of his life. He is an inspiration and will always inspire, from up above.  And he will continue to shine.

http://www.krqe.com/dpp/sports/former-lobo-soccer-star-dies-from-als

Dear Dad

Dear Dad,

Two years today. You left our world. You entered your new world with your Savior. I miss you.  We all miss you. I miss your smile, that was so very charming.  I miss your jingles that you would sing.  I miss the days you would pace with the worry beads in your hand. I oddly miss the times I would get mad at you for smoking. I miss the nights when you would put a blanket on me after falling asleep on the couch. I miss your mid afternoon phone calls while at work. I miss the upbeat voicemails you would leave me.  I miss your desires for a Whopper at Burger King. I miss you sitting on the front porch greeting all our neighbors. I miss your warm heart. I miss you. You weren't the "picture perfect" dad for reasons out of your control, but you were the dad with the heart of gold, that cared and loved us deeply. You are the dad that watches me from above.  You are my guardian angel from up above that protected me during my cancer journey.  I often wonder what you would have done or have said during my fight with cancer.  I will never know but I do know you would've cared and loved me uncontrollably.  Dad, it's a crazy world.  You left us and then I was diagnosed 1 year later. How could all of this happen to me?  All with months of each other?  I know not to dwell on these questions and waste my time or thoughts, but I often wonder and let the thought slip away, especially when I think of you, knowing that you are protecting me. Dad,  I carry you with me everyday.  I am loved by family and friends that get me through each day. You protect Mom, Helen, Hilda, Layla, and Morgan. You protect my friends and close family members who care for and love me.   Year 2 is harder than year 1.  But I know you will get me through this.   I hope you see the candle that Minos and I lit for you today.  It's shining bright! I miss you! I love you!

Love always and forever,
Noura Bondoura aka Noreen

The 411

I am writing today to give an update.  About 3 weeks ago I had my follow up CT scan and saw my oncologist as well.  Good news!  I am still in remission and there is no evidence of disease (as the CT scan report reads). The days before the scan, there is a bit of "scanxiety".  A common thing cancer fighters/survivors go through.  There is a love/hate relationship with this machine.  It told me I had cancer and it also told me I am cancer free.  I think the thing that gets me the most is the prep for the scan. I am allergic to the Contrast dye they use for CT scans. I have to take Prednisone and Benadryl.  Both make me a bit loopy! And the Barium.  I can't even drink the 2 bottles they ask me to.  I barely can get through 1 bottle!  And I feel like crap afterwards.  When I saw my oncologist, I actually said I would rather get Chemo than deal with meds and Barium.  I am crazy, I know!  Good ole Dr. Leo and Betsy are truly wonderful.  Just warm hearted, patient, and fun.  They thoroughly explained the chances of relapse.  Relapse occurs within 18-24 months after the last chemotherapy treatment. There is a 10 % chance of this relapse.  BUT, relapse typically occurs with patients that had radiation (which I didn't have), patients that did NOT receive the full 6 months of ABVD chemotherapy (I had the full 6 month cycle), patients that did NOT respond well and quickly to treatment (I was cancer free after 2 months of chemo), and patients that were in late stages of Hodgkins (I was Stage IIB).  So I have everything in my corner!! We discussed my minor heart issue- low ejection fraction, which I am currently under the care of a fantastic cardiologist.  I have to get echos every 6 months for now and continue to take Coreg.  I am at risk of congestive heart failure (CHF) because of the chemo but that could be 10 years from now, 20 years or never.  The medication I am on now will help protect me from CHF and there are some subtle changes of improvement on my last echo.  I see my oncologist in 3 months, my cardiologist in 6 months, and echo in 3 months, and CT scan in 6 months!

Some other news that I haven't really spoken about is my fertility.  I mentioned in earlier posts that there is a 10% chance of becoming infertile from chemotherapy.  I had some basic blood work drawn in January and was told that I was possibly infertile but it wasn't definite.  I wasn't scared when I was told this because it had been only 6 weeks since my last round of chemo and my body was still recovering and regenerating new and healthy cells.  I didn't have signs of menopause (which is a possibility at my age because of the chemo).  I knew the "picture" wasn't complete as there was more to check into.  I saw the specialist again 2 weeks ago and was told things look promising.  She believes I am in good shape if I ever want to get pregnant (and it's not anytime soon).  But she did say that we really won't know if I have fertility problems until that time comes for me to create little noreens.  I am hopeful.  Only time will tell.

Overall, I am feeling well.  I am active and have gotten back to my very busy social life.  I am tired and fatigue at times but that's normal.  I am rocking my short hair and get several compliments on it.  I have been told by a few strangers that I am beautiful.  Just random people coming up to me and saying that! It's a nice feeling, I am not going to lie.  One of the best things I am excited about are my eyelashes!  They are completely back and I have missed them oh so much.  Losing my eyelashes was really hard for me.  I know this sounds silly but I felt ugly when my eyelashes were gone.  They made me feel beautiful and feminine, and seeing my eyes (during chemo) broke me down at times.  But that's in the past and I feel good!  On to the next tiny victory!

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.