With Every Heart Beat

My heart. The big muscle that is supposed pump blood throughout my whole body. Well, not mine.  I am very frustrated and upset about it.  And today is monumental for me.  It’s my 6^th round of chemo.  My halfway point.  I am receiving messages from friends and family this morning of encouragement and excitement.  So grateful for all of you. But back to this little ticker of mine. 

I had my follow up echo and cardiologist appointment last week.  Last night, I got the final word on the plan for my treatment.  Dr. R spoke to Dr. Gordon and they have decided to put me on heart meds for at least year (Coreg) and continue taking the Zinecard along with my chemo treatments.  My echo had the same findings as my first echo before treatment started.  40-45% ejection fraction which is below normal.  Normal is 50-60%.  The ejection fraction (EF) is the measurement of how much blood is being pumped with every heart beat.  My Left Ventricle is mildly depressed and my cardiologist would say.  My Right Ventricle is normal.  Since I am receiving chemo this puts my heart at risk.  Hence why they give me Zinecard to protect it.  Now my EF didn’t drop which is good but it didn’t get better.  My doctors were hoping that the disease/cancer in the area around my heart was causing my EF to be low.  But since I have no more cancer and the echo still showed the same findings.  The doctors are still not sure what is causing my EF to be low.  We have done several tests already and nothing has provided an answer.  Dr. R thinks a virus may have caused this.  That I was sick for so long and didn’t even know and that viruses are known to attack the heart.  She said if my EF stays at 45% the rest of my life, I will be just fine. BUT, since I am going through Adrimyacin (one of the chemo drugs) I may lose 20% of my EF at some point in my life. When?  It could be right away or 50 years from now.  There is no real way to tell when the EF will decrease.  But we monitor and try to prevent that decrease is muscle strength. If it drops I am at risk of heart failure.  I am seriously frustrated.  I have been a healthy eater (most of the time), a non-smoker, not a big drinker, an athlete the majority of my life, a good student, heck I got all A’s in grad school! Why me? What else can go wrong now?  Why is it one thing after another?

I don’t want to feel this way but I can’t help it.  My friends help me find meaning in this. I am grateful I now know about my heart.  If it wasn’t for cancer I would have no clue. I am a tough girl.  I beat cancer.  And I can get through this.  I have to keep my mind strong and positive.  I am thankful for medicine.  It is healing me and it will protect my heart and my health.  I am lucky to be living and to have insurance and to have a wonderful medical team at Northwestern and to have all of my friends and family.  I just want this year to end and move on to normalcy.

A little Robyn for you, with every heartbeat!  I will go dance right now and feel every heart beat, feel my heart pumping, and feel alive.

Just Another Manic August

It’s been an interesting week. And I have had a rough time.  Trying to grasp on to something that makes sense to me.  For the first time, I have felt that I needed a break from the cancer world.  I needed to forget that I am currently battling and that I am part of this new world as a cancer survivor.  I wanted nothing to do with cancer.

I started my journey devastated and crushed.  I had no idea what to expect the next 6 months.  May was full of shocking news.  Learning I had cancer.  Learning I had/have a slightly weak heart (physically). I was numb.

June was full of uncertainties.  I didn’t know how I would respond to each treatment.  I didn’t know I would feel like I had World War III going on in my chest.  I didn’t know if I was going to lose my hair so I took control and shaved it off.  I didn’t know how to feel yet. I was just going through the motions.

July was a routine.  I slowly figured out my symptoms.  I was working regularly.  Yes.  I took at most 2-3 days off of work every 2 weeks.  I was full of energy and fight.  I twisted out cancer all over Chicago with Jenna. 

August. Well, I’m not sure about you August.  You are slightly messing with me.  I learned I am cancer free.  Amazing news of course.  I met NED, (No Evidence of Disease), as a dear friend of mine would say.  People were more excited to hear about my remission than I think I was saying it.  Because I knew this wasn’t over.  I have 3 more months to fight.  I have 3 more months to shift my focus.  But I am not sure how to do that knowing that the cancer is out of my body.  I have no association to make with the chemo because there is nothing left to kill.  Besides my healthy cells.  I found that I was extremely fatigue this last round of chemo.  It extended longer than the usual.  Why?  I should have my energy back because all the cancer is gone. Well, not exactly.  Chemo obviously runs people down.  It is catching up with me.  It’s adding up and dragging me.  And I hate it!  Of course I start researching and reading about how long the fatigue may last for.  I read it can last for several years.  I don’t want that.  But I won’t know what to expect.  I find myself wanting to be mute.  Wanting to be in silence.  I am trying to figure this all out.  I end up going in for fluids for rehydration and ended up having a very good talk with the social worker.  I find that I am crying basically the entire meeting with her.  She told me everything that I am feeling is completely normal.  She really puts things in perspective for me.  She explains that when she found out that she was in remission (she had the same cancer as me 10 years ago), she was very angry and had to take a break from the cancer world for 3 years.  She asked me to try to define why I was frustrated and angry.  What caused those emotions? We talked it out a lot and she helped me vocalize my thoughts and emotions.  It was so needed.  I expressed that I should be relieved and jumping for joy that I am in remission but that fact that I am not makes me feel like a brat.  So many others are currently fighting cancer for years and have yet to meet NED and yet I am lost. This state of in-between is, so far, the hardest thing for me in this journey.  I thought all the preliminary tests were hard.  Not exactly. 

The past week I spent time with some great people.  My sister Hilda was in town for 2 weeks.  She pretty much made me breakfast everyday and offered up lunch and dinner.  But I was moody and never knew what I wanted.  Thanks for being patient with me.  I know I’m not the easiest to deal with.  You are so sweet and caring.  Thank you and I love you, you nerd! ;)

I spent some good times with my cousin Rose.  Ever since I was little, Rose was always the world to me.  She was my superstar.  I still feel that way about her!  She’s the best!  Love you Rose.

I stopped by UIC to have lunch with my former boss who is a survivor as well!  He always puts a smile on my face and makes me laugh. 

I saw a few of my old soccer guys.  I started crying when I saw them.  It was the weirdest thing.  They were good tears.  I was reminded of how much I connected with one of the guys.  He and I had connected immediately.  When he came in as a freshman, he had knee surgery so we automatically bonded during his rehabilitation.  He had experienced some hardships from the loss of his brother, to relationship situations, to just life.  I listened to him and was there for him.  And this time, when I needed care, he was there.  He would always check in with me.  He was there for me. You are a special kid to me and right now I am saying “thank you” in our Mali language noise (click, click, click)!

I had dinner with my NovaCare girls.  Amazing ladies that I work with.  And might I say we have some attractive physical therapists!

I went to Jenna's event the day after my last treatment.  The room was so full of love and energy. She is truly an inspiration.  She freaking beat Grey Zone Lymphoma.  It's a rare cancer.  There is really no standard protocol for treatment.  But Dr. Gordon saved her life. And Northwestern linked us together.  She truly amazes me.

Through all these encounters, I was not sure of my emotions and tried to talk it out with some of my friends and family.  But truly had a hard time.  I am growing and learning though.  I am processing.  And that’s all I can do for now. 

This Wednesday marks my halfway point.  I will have had 6 of the 12 chemo treatments.  And I can’t believe it.  Everything has just happened so fast.  But I still can smell the roses.

Here is Jenna's story and some video of us twisting out cancer all over chicago!  My sister, Hilda, made this video.  She did an amazing job with the animation.  My cousin, Bliz Beats, created the beat playing in the background, "Shake It Off".  My family is so gifted!

i'm cancer free, but now what...

I'm in remission.  But I don't quite believe it.  Maybe because I have 7 more rounds of chemo.  Why do I have to continue with treatment you ask? Well, Dr. Gordon is following the standard treatment plan.  They have stopped people after 8 rounds of chemo but they don't have enough data to support the good outcomes. I wish I could stop now.  I hate feeling so worn out after chemo but I love the bounce back of energy the week after.  I hate the nausea, the sore throat, and the metallic taste but I love it when I can eat yummy foods when that's all gone. So a total of 12 rounds it is. Then a repeat scan 8 weeks after the final round of chemo, then every 6 months thereafter for the next 2 years. It's not over.  Everyone is happy and excited for me and I have yet to figure out my reaction.  I'm happy, no doubt.  Should I be falling to ground crying tears of joy, should I be doing cartwheels?  I haven't figure it out.  We will see what the next few weeks bring.

Chemo wasn't bad for Round 5.  My sister Hilda, my cousin Rosie and my coworker and dear friend Cooper joined me for round 5. My counts are extremely low (as low as they were when I had a fever, meaning my white blood cells and Neutrophils (all the good fighting cells) are nearly at 1 and 0 respectively.  I have been extremely fatigue this past week and my nurse  said it's because my counts are so low and chemo can have that effect and worsen as we go on.

I still have my hair.  It's thinning but not too noticeable.  I still have my eyebrows and eyelashes. And my arm hairs, other than that all my other body hair is gone or slowly growing back.  I even lost my nose hairs!  I wonder if Iwill lose the rest of my hair as chemo continues. It's going to be weird to say I don't have cancer but I look like a cancer patient (that is if I lose my hair).  Ok, I'll stop looking ahead.  This brings me back to the first day I was diagnosed.  Each day was like I was moving in slow motion. I was fast forwarding to December and not taking each day as it came.  I assumed I was going to be bald and bought scarfs and wigs.  I buzzed my freaking head.  I wanted to take control and not have the cancer control me.  But now 3 months later, time has passed by, I still have a head of hair and I am one step closer to being done, I am cancer free, and I appreciate things so much more.  It's amazing how your life can dramatically change within 3 months.  Do we need something tragic to happen us to realize all the fruits of life?  Do we live in a world were it's work, work, work and no time to slow down and smell the roses? I think I did, and I don't want to go back to that.  I need to slow down, and do the things I enjoy, and do something I'm passionate about.  I will do these things.  Because I am not one to settle, or sulk, or feel sorry for myself.  Not once did I feel guilty or sorry or ashamed that I have, I mean had, cancer.  Don't get me wrong, it sucks but there is so much to be learned from this. And I chose to blog to help me cope and learn.  I am learning so much about myself. And yet it's strange that I chose to share my journey so openly. I would consider myself somewhat private.  I'm selective about what I share on Facebook in general.  But yet I chose to share my story.  I wanted to show people what I was going through so they wouldn't be scared or worry for me.  I wanted to keep friends and family updated as it was the easiest form of communication.   I wanted to share videos of music, because music has been so therapeutic for me.  I want someone, who may be diagnosed with Hodgkins today, to come across my blog and connect and learn from it.  I want to pay it forward. 

I want to make another reference to my "t h r e e " blog that 2 special people pointed out.  I am 3 decades (1 y) old.  In 2 years, after complete remission, I will be consired Cured! In 2 years I will be 33.  Three, you are my new favorite number. My friend reminded me of the jam "three is the magic number" by School House Rock.  Did you know I learned the Preamble and can still recite it today because of School House Rock?

Anyway, I also failed to mention a few thoughts I had in the "t h r e e" post.  As I was driving to my PET scan, "Another One Bites the Dust" came on the radio. I smiled! I thought to myself, today, another Hodgy is going to bite the dust.  And I when I was getting my pet scan, Jenna, my angel told me to imagine that I was in a cocoon being wrapped around with the love of my family and friends. I did imagine that, took a deep breath and smiled.  I closed my eyes and hummed "Another One Bites the Dust"!

Thank you all for your love and support.  I couldn't have done this without you.  Please continue all the positive chi as I finish my journey.  I love you all!

My note to you cancer, "Cancer, you stood no chance!  You can't have me and you can't handle me!"

My remission High Five

Queen- Another One Bites the Dust

School House Rock-3 is a magic number

t h r e e

three

The number 3.  Exactly three months ago, I received that awful phone call from Dr. Hsieh telling me they found a lymphoma in my chest and I most likely have cancer.  I was blindsided.  The past 3 months I have cried, laughed, fainted, became feverish, worried, became hopeless, became hopeful, became a fighter, became a survivor.  Today, 3 months later from the dreaded phone call, I got my "unofficial" read on my PET scan.

I had my PET scan scheduled on August 8th.  I wasn't nervous.  More tired than anything.  I had an extremely busy week.  I took a flight to Connecticut for work and I didn't get sick!  I washed my hands literally as often as I could.  Or used my hand sanitizer.  I had my first glass of wine since May.  It is recommended that you don't drink while undergoing chemotherapy, but I have been feeling pretty good that I asked my nurse if I could cheat.  She gave me permission to have a glass of wine here and there but closer to my chemo day, not after.  I can't have sushi, because of the risk of getting sick. But she gave me permission to have a california roll (no raw fish, just imitation crab, ha).  So I did do those things.  I went to a favorite Sushi spot called Shine with Amy, Vivian, Rachel and Renee.  I savored every sip of the wine.  I loved the california roll even though that is an amateur roll.  I drooled over every bite (ok, maybe not) of the chicken pea pod dish.  So yummy.  I find myself dreaming of food. 

I had dinner with my cousins Freeda, Shafeeg, and Fadi.  Lorena, Ari, and Minos too.  We shared some good laughs and reminisced about the old days.

I had an amazing dinner with my sisters and bro-in-law at Picollo Sogno.  I had another glass of wine (shhh, don't tell my doctor).  I swapped wigs with Layla, my niece.  She rocks a mean pink mullet!

I went to a Bollywood Groove class with Rachel, Andrea, and my sister Hilda (who is in town the next 2 weeks).  I got my heart pumping.  It felt so go to be alive and to be dancing and working out.  I was able to make it through more dance routines then last time.

I had dinner (I know, I eat a lot) with some high school friends Katie, Kitty and Jamie.  We went to Retro on Roscoe and I danced my little heart out to 80's songs played by my favorite band Spazmatics!

So, yeah I had a busy week of work, food, dancing and laughing. The whole week I knew how important the following week was going to be.  I had reached a milestone. 1/3 done with treatment.  Repeat PET scan to check the activity of the cancer cells. An echo to see how my heart is holding up and if the ejection fraction is still low. But yet, I was still calm about going in for the scan.  I even asked the nurse to take a picture of me after my scan.  This machine is my enemy and my best friend.  It told me I had cancer.  It can tell me I'm cured.  It can tell me my cancer returned (hopefully that won't happen in the future). I saw the this machine and said to it, "Hi dear friend, You are going to be good to me this time, right?"

So what were the results….

I emailed Dr. Gordon, I mean Disco Leo, if he had the results yet.  He replied to me late that night but I was sleeping.  Today, on August 9, three months later,  my alarm wakes me up at 7am.  I look at my phone to see if I have my envelope icon.  I do! It's an email response from Disco Leo. I read:

"Noreen, Report looks great (just saw it) and I have not seen the scan myself but will tomorrow. All disease reported as gone. Looks like a non-significant area of inflammation in lung." 

My CANCER is GONE! Am I in remission?  I think so!  I still have yet to hear the official words come out of Disco's mouth but I go in tomorrow for Round 5 of chemo and I will see him.  I think this means no radiation and continue with chemotherapy for the next 4 month to make sure there is no reoccurrence. It's a blood cancer.  Kill all those nasty cancer cells and make sure they never come back.  I will hear the official words from him tomorrow if I am in remission.  I believe the word Cured is used till after 5 years of remission, of being cancer free…but don't quote me on that.

I tell my mom right away.  She sheds several tears of happiness, relief, joy.  I have yet to cry tears of happiness.  It hasn't hit me.  Maybe because I need to hear it from Disco Leo.  Maybe because I have 4 more months of treatment.  This journey isn't over.  It will never be over.  I say that because I have a different outlook.  I am entering a new chapter of this journey of life of being a cancer survivor.