Deep Thoughts By Noreen "Karate"

Get it?! SNL?

Anyway, I woke up at 5 am this morning and had many random thoughts running through my head.  I would like to share;)

First,
I had round 4 of chemo yesterday.  It was much easier with the port.  It hurt the first time when she "stabbed" me with the needle but they gave me a prescription for a Lidocaine cream to numb it up for next time.  I love medicine!  I had quite the entourage at my chemo session.  Minos took me to the hospital, where I was greeted by my handsome cousins, Issa, Feras, and Malik.  Then my buddy Andrea came by and Jenna my angel stopped by.  So much fun! I was pretty beat after chemo.  And am feeling tired today with an uneasy stomach.  Good thing for Zofran!

Second, what a wicked storm last night.  It woke me up and it was scary yet awesome.  At least the storms are happening at night and not during the day so we don't get stuck in it.  Although I love looking at lightning storms!

Third,  can you take a guess of what the cost is of all my medical bills?  Since April 1, 2011, my bills have added up to $132,000!  Whoa!  Thank goodness for health insurance.  I do have a portion that I have to pay out of pocket but its not too terrible.  Well maybe a little.  This doesn't include my pharmacy meds and wigs and parking.  But luckily I have awesome support.  I got one of my wigs covered by Amy's sister-in-law's foundation called For Mercy.  Super grateful for that and I will pay it forward!  My pharmacist, my legit pharmacists, over at CVS on Irving and Western have been nothing but fantastical!  Ali and Mark take such good care of me with their follow up phone calls, candy in my prescription bag, and working on my stupid insurance.  I am shocked that several of my meds aren't covered. They gave me a 25$ giftcard to help cover the cost of my last prescription. Awesome people!  Just in case you didn't know I take 3 meds minimum a day and can go up to 9 a day depending on symptoms, poop control, and my antibiotics that are taken 3 times a week.  All preventative meds to help when my counts are low to steer away any infections, colds, viruses, whatever.  And the parking (or barking as my fellow arabs would say because they have a hard time saying the "p"), about a month into my cancer world I learned that the American Cancer Society provides free parking vouchers for each visit related to the cancer at Northwestern.  That saves me about $40-80 a month.  Again so grateful for all of this support.

Fourth, I seriously think I have the whole world in my hands...My catholic school girl is coming out because all I hear is "he's got the whole world in his hands..." one of my favorite Jesus songs.  Ha.  I have people supporting me from all over the world.  I have family and friends everywhere,  It's amazing.  I have a load of my former athletes that have given me so much support and have reminded me how much I love being an athletic trainer. They have reminded me that the care I provided for them was appreciated and they would love to show their way of caring now.  I have had my Bear run a race in croatia for me, I have had one of my lovely softball girls send me a handmade quilt, which I absolutely love, I have received flowers and loving words from all of you.  All of you are so dear to me.  You made my years as an athletic trainer at UIC and DePaul memorable and heartwarming!

My coworkers!  You doves are the bomb!  I couldn't have a better team of co-workers with all the support and help you have provided.  Go NovaCare!

My dearest and closest friends.  Words can't express what I feel.  You have all done so much for me and supported me every step of the way.  To my Justin Bieber life size, to the "no." necklaces, to the numerous care packages with loads of goodies and Cosmo magazines and skin care products, to movie nights at my place or at the theater, to golfing and bollywood dance, and to the pure laughter you give me everyday that keep my spirits up and especially the love you pour out every single day.  I love you!!

My angel, Jenna.  You and I are truly Lymphoma Soul Sisters.  So grateful for you.  You have no clue!  I will get back to you in my sixth thought;)

Fifth, my family!  I have some amazing sisters (and bro in law) an incredible mom, a guardian angel above...my pops, and awesome aunts, uncles and cousins and a beautiful niece.  My family give me so much love it's disgusting (this means that it's a good thing). I, again, am at a loss of words to describe these feelings.  I am one of the luckiest girl to have such an amazing family.  And mom, you truly rock my world. I threw you a curve ball.  Your baby girl has cancer but I am a fighter just like you! I don't know how you do it but you just provide so much care and love that I hope one day I will do the same to my little noreens. I love you and all of you!

Sixth, my pops. Of course I think about him a lot.  I always wonder what he would have said the day I found out I had cancer. Perhaps he would say " Noreen, you will be fine.  Now eat mushrooms!" I find myself doing little things and I realize my dad used to do these things such as the way I wash dishes, or twiddle my toes (ha), my mannerisms, my smile, my caring heart.  It's him!  My dad would give the clothes off his back or our home if he could to a homeless person.  That was just the kind of person he was.  A man with a golden heart! He is my guardian angel from up above. Watching over me, my mom, my sisters, Layla, Elise, Anna, Tanja and Maya and my doggie Morgan.  He sent me a real life Angel, Jenna.  And I find it comical that he sent me a Jewish angel because we all know the debates my father has had about the Jewish community.  I mean my sister married a Jewish man and he is amazing! We all love Mark! Ok, don't read this the wrong way but again it just shows how we are all connected! Pops, you know how to make me laugh even from up above. Thanks pops!  I owe you a visit.  Love you Baba!

Finally, what states and countries do I have in my hands?  Here are the spots where all this positive chi is coming from:
Illinois *duh
Indiana
Michigan
Wisconsin
Iowa
Minnesota
Missouri
Kentucky
Georgia
Florida
Pennsylvania
Connecticut
Massachusetts
NewYork
Texas
California
Nevada
Arizona
Colorado
Hawaii
Canada
Jordan
United Arab Emirates
Serbia
Croatia
Germany
Ireland
Australia
Japan
Netherlands
England

I seriously have the whole world in my hands.  Thank you to all of you!

Here are some world songs for you!

And this...

And for the grand finale...

I'll have a classic Port, and not the wine...

July 22 2011

I opted for the port. I had to save my veins.  I had 4 bruises on my arm from the last infusion.  My mom said I looked like I was a heroin patient.  I can't have that!  The port is a nice alternative.  I had the procedure today and basically they put a "port" in the right side of my chest with a catheter (underneath my skin, and over the collar bone) into my jugular!  Crazy huh?! Add 2 more scars to my chest and now I have 4! I just hope the scars heal nicely. I love wearing strapless dresses!

Here is a video clip of what a port is and the procedure.

http://www.portadvantage.com/flash/animation.html

Earlier this week, I went to a Bollygroove class.  Rachel found this awesome dance/cardio class called bollygroove that does Bollywood style dancing.  With a whole bunch of "cheesies" and "light bulbs", Rachel and I danced our butt off.  It was such a great workout.  My heart was pounding fast and I was definitely out of shape.  It felt good to sweat from working out and not this darn heat!  I had so much energy after but quickly fell into a food coma right after dinner.

In no time Rachel and I will conquer this!

Round 4 of chemo is scheduled for July 27.  Then my follow up PET scan is August 8.  We are hoping the mass will be gone and the cancer will be out of my body.  If so, Chemo will continue for four more months but no radiation will be needed.  If the mass is still present and they see "cancer" activity, I will need radiation.  Keep those prayers and thoughts coming because I do not want to go through radiation! Love you bunches!!

Check Yourself Before You Wreck Yourself...

Do I have to tell myself everyday, you will get through this?  Do I have to talk to my cancer cells and tell them to "go away!" so they can go away?  When I feel sharp pains in my chest, do I just ignore it or tell my brain...CHECK YOURSELF? What do I do?  Well, everday is a different day.  Everyday is a step closer to being cancer free.  Everyday is a different emotion, an emotion that I may have never experienced and an emotion that I am not exactly sure how to process.  Everyday is a different symptom, another reminder I am not well and I am not myself.

I have had a lot of time to think this past week.  And a lot of time to say F@!# YOU CANCER.  I was at the movie theater watching Transformers (I love Shia) and my chest pain was acting up.  I am told that the cancer pains I am experiencing are my nerves talking and the chemo working and destroying all those nasty cancer cells.  Or the cancer cells exploding in my chest, as Jenna, my angel, would describe it.  But the pain really sucks.  I can't even sit comfortably without having stabbing pain here and there.  I am sitting there saying to myself, "Really?  Damn you cancer!  I can't believe I have cancer and that I am going through this."  I go back the feeling of shock and denial.  I don't believe I have cancer.

The day before Transformers, I meet up with Jenna to help out with promoting her Twist Out Cancer event.  We call ourselves the Lymphoma Soul Sisters.  We are working on a dance video to premier for the Aug 11 event.  And as we are recording and replaying the video, for the first time, I actually see and hear myself saying I have Hodgkins Lymphoma.  I didn't know how I felt about it.  It was weird.  I stored that thought away because I was having a good time with Jenna.  But I certainly thought about it all weekend.

At the beginning of this week, I was driving with my friend Ali to meet a mutual friend who just finished her battle with Hodgkins.  Seriously, there are way too many of us out there!  Anyway, during our drive, I bring up the video thing to Ali.  Having a hard time putting a word to the feeling I was experiencing, Ali sums it up perfectly for me.  She said it was the first time I was labeling myself as a cancer patient.  She reminded me that I didn't like it when the oncofertility specialist kept referring/labeling me as a cancer patient (and not my name), and I was pretty upset and mad about that.  The hard part about that time was that I was just learning that I had cancer.  Let alone I had someone "labeling" me as a cancer patient when I didn't even have a second to process it. Now that I am about 2 months into this fight, I for the first time, heard those words come out of my mouth.  Yea, I tell people I have cancer.  But I was seeing myself saying it, feeling it, and living with it.  Accepting it perhaps.  I don't know.  It's just funny because the other day when I was watching Transformers, I was not having any of it. None of this cancer nonsense. But the next day I was connecting with it. This just shows the ups and downs I deal with everyday.  Everyday there is something new or something old that surfaces.  Or some new discomfort or pain or the same run down feeling.  But then I tell myself to remain strong and positive.  Use my brain and its' immense healing powers.  Mind over matter. So everyday I check myself before I wreck myself. Word!

Little Ice Cube for you...

"Noreen, you are valve-y"

July 11 2011

Round 3 of chemo today.  I feel out of sorts. I am not getting chemo on my typical wednesday. I am scheduled for the afternoon instead of in the morning.  I start off the day working.  I get some things done.  My sister is taking me to chemo today and Deb is meeting us there.

We stop at Panera on the way so I can grab a quick lunch.  I am waiting in line.  There are 8 kids running around and the next thing I see is this kid vomiting on the floor.  I get the heck out of there. No thank you!

We head to the hospital and Deb meets us there.  I get my blood check and all my counts look great.  I bounced back!  My white blood cells and Neutrophils are back in the normal range.  I am relieved.  I get placed in a room, but not my usual room.  I have no bed this time.  Celia starts preparing me for my iv.  We put a hot pack on my arm.  She pokes me once, then twice, then a third time.  Unsuccessful. She was able to get in my vein but my blood flow was poor.  We need to have proper flow because my chemo drugs are caustic and can damage to my pretty little veins.  Celia gets another nurse to try.  Her name is Cheryl.   She immediately asks me to change my music because she was not having Gnarls Barkley. Deb changes the music for her and she is happier. She pokes me 1 time.  Unsuccessful.  She says I am valve-y, whatever that means.  We discuss getting a pic line.  This is were they put a line in my inner arm.  I feel pretty upset because I don't want to have a problem with chemo and I don't want a pic line.  I don't want it to get postponed again.  I tear up.  I am frustrated.  Cheryl tries again.  As she is poking me again she says to me, "Baby, if you can get through a pap smear, you can and will get through this" I immediately laugh.  She gets in the vein.  Success!  She gives me a big hug.  Then brings me candy and says I got a star for today for being the best patient:)

Wonder Woman with some barbie on her shoulder;)

We start the Zofran (anti-nausea).  Then the Zinecard (heart meds).  I immediately get dizzy and everything I see starts spinning.  I lay back and recover after 15 minutes.    Celia puts me in another room.  We start chemo  this time and she administers my Adriamyacin, then Bleomycin, the Vinblastine.   We then get my final chemo drug started on IV drip.  I get immediately tired.

Beth, the social worker stops by and we chat.  Beth always does a great job of checking in with me and makes sure I am doing well.  I start telling her the latest with me, my wig story, and some other stories about my BM.  I learn that she too had Hodgkins at the age 20.  She is 31 and a survivor.  We start talking about the word survivor and I tell her I can't wait to be a survivor.  She tells me, "Noreen, you are a survivor today and everyday.  You are surviving each day of this journey"  I guess I never looked at that way.  Then it leads us into another discussion.  I tell her that many people say I am an inspiration, courageous, and brave. I often don't know what to say to people when they say that besides thank you.  I feel I have no choice to face this disease with a positive attitude.  I am not a negative person.  I would be this way even if I didn't have the Hodgy.  She says maybe people are reacting to the way I am handling this and friends and family know what kind of person I am and it is truly showing now that I am going through this.  She definitely brought some insight for me today. Thank you Beth!

We get done with chemo and Celia and I start talking about getting a port.  A port is this device that gets placed in my chest and connected to a main vein.  It has a rubberized center which gives easy access for IV's and shots and what not.  This is a way to save my veins and it will be less frustrating for me and them to find a vein that is "working".  It is another surgery but I am sure it's well worth it.  The sucky thing is that this will be a 3rd scar on my chest.  Another war wound, another reminder I will face everyday of what I went through and will overcome one day.  Another day to shout "Oorah!"

I am leaning towards the port. I need to save my veins.  We wrap up and we get going.  I am extremely tired which again this is not normal for me after chemo.  I get home and my Aunt Intesar (really cousin) and Uncle Maurice are over.  It's so good to see them as they always make me smile and laugh.  My little terror of a niece is over as well running around like a mad woman.  My aunt an uncle give me this sweet pajama set.  I put it on immediately.  We eat some dinner then I go upstairs and nap.  Still pretty tired.   I slept for maybe 15 minutes but it felt like I was out for 1 hour.  I hear Ali talking...she is at my apartment.  She came by to give me a special gift.  I actually know about the gift.  It's a necklace. And this is how I knew.  I stopped by our Lakeview clinic on Friday to say hi to my coworkers and show them my newly buzzed head.  I then look at Bethany's necklace and say "wow, that's really cute".  She has this look on her face like "Oh shit".  It clicks.  Someone a few weeks back mentioned something about a necklace and I didn't ask any more questions.  The necklace is silver with an id tag.  On the tag it reads " no.". I say oh the "no" is for my nickname and it also means "no" to cancer.  Then Laura turns her necklace around and I see she has it too! Anyway, I went back and forth as to wheher I should tell Ali I knew.  I know she was super excited about it.  I didn't mention anything yet but it does come up.  I open the box and read a note from the designer.  She said she is so happy to be making these necklaces for me and my friends.  I open the box, and of course I love it!  I see names of my friends that have purchased the necklace.  This is a nice surprise.  It really hits me.  I have so many friends and family that love me.  I have so many friends that are supporting me every step of the way.  I am extremely touched and grateful.  I give Ali a big hug.  Even though I knew about the necklace I was still surprised.  I told Ali I saw it a few days ago and she didn't care at all.  She said she didn't tell anyone to keep it a secret.

I was sitting and admiring the necklace.  I start tearing up a bit because I am so touched. I also feel sad for some people that are fighting cancer alone.  It's not fair to them.  It's not fair to anyone really.  I send Ali a text "You got me tearing up!  I am so lucky to have you and everyone.  There are people out there with no one to help and I feel so sad about that.  But I feel so loved and supported and it's a true blessing.  Thank you!"  She replies back, "you DESERVE all the love in the world.  We are lucky to have YOU!  You are a blessing and we love you!"  Just typing this makes me tear.

She sends me the email that she sent out to our friends.  The opening paragraph is beautiful:

Hello Friends of Noreen!

In an effort to show our support and love for Noreen we have created a custom-Noreen necklace. We found a modern artisan jewelry artist who hand makes "i.d. plate" necklaces. They are funky, simple, and classy, and I think they would make a great statement of support for our friend. The necklaces are elegant, eclectic, and unique as our Noreen is, and we want to invite anyone and everyone to rock one in support of her and as she undergoes treatment and recovers from lymphoma. She has been surrounded by so many family members and loved ones and this would be one more way we can jointly remind her that she is loved and cared for. We all contribute differently, and aside from our physical presence and words of love and support, it would be awesome for our immense network of friends and family, people she has trained and cared for, and people that adore her to be able to send our message in a shared way that says we are all behind her. 

Seriously!  How awesome is she for doing this?!  I love you Ali! I love all of you who are supporting me.  Thank you. Thank you. Thank you!

Attached are pictures of the necklaces:

 And a video for my latest obsession...this tune has a happy beat!  I am an escapee of Cancer.  It's taking me on a messed up ride but I will escape! 

Damn you fever and wig lady!

I had a great 4th of July weekend.  Saw lots of friends and family, did some dancing, played a few games of Washers, and laughed a lot.  On July 4th, I woke up feeling exhausted.  I was getting the chills, my gums were sore, I didn't feel well.  I took my temperature and it was 100.4.  My nurse said if it ever gets to that temperature call the doctor. So it's 8 pm on 4th of July, not thinking Disco Leo would answer, I call him at home.  He answers!  He calls in a prescription for different antibiotics.

july 5 2011
My temperature is 101.3.  I email the medical team.  Disco Leo asks me to come in and get some bloodwork checked.  Fever breaks but then comes back later that night in the 100 range.  Counts are low and my absolute Neutrophils are at 0. No infections show up in the bloodwork/cultures.

july 6 2011
I go in for my scheduled infusion.  They check my counts again.  I end up being evaluated by Disco Leo and he says that we are going to postpone treatment to Friday or Monday.  I'm pretty upset because I don't want to be off track and I want to get better fast.  My Absolute Neutrophils are still at 0 but I have some baby cells being created, healthy cells that help with the fight.  Disco Leo says 1% of people get unexplained fevers.  Leave it to me to be placed in that percentage.  Chemo gets pushed to July 11!

My roommate Amy calls me and tells me my wig was at the store.   Here's the story; 2 weeks ago I went to a specialty store to get fitted for my wig.  We order a few options and the lady said it would be there in 2 days.  I schedule my appt for the following week.  When that day came, I called and rescheduled the appt because I wasn't ready.  Yes my hair was shedding, but not falling out in clumps.  I decide to reschedule to the day before chemo (which was postponed), so I can mentally prepare myself. And besides I was certain that the 3rd round of chemo was going to officially speed up the hair loss.  Right as I was about to leave, the store calls me. "We don't have your wig. I don't know what happened. I am so sorry".  I was pretty upset.  Don't they realize that this is an emotional thing!!!  Amy and Renee call them to sort things out.  Amy tells them maybe they should have told me that the wig was not in yet when I called the week before, so I could be prepared that it may be there or it may not.  So back to Amy calling me the day it came.  Since I didn't have chemo, Minos, Deb and I go to the store for my wig appt.  I failed to tell you that they had my wig all along and got the order mixed up with another Noreen.  First of all, how random is it that there are 2 Noreen's getting wigs.  People, check the last name! Minos is driving my car and insists on playing Chiddy Bang.  I say no.  He basically became a brat and I cave and let him have his music.  After a song and a half play, I switch to my ipod and play Justin Bieber.  Minos freaks out...ha!  Then I went back to some music he would like...Matt and Kim.  Good pump up music for a trip to get your head shaved!  We get to the store and they apologize over and over again.  I sit down in the chair. We do a few things before the official buzz. Minos is intrigued with all the breast prosthetics and the options of nipple colors.  The lady grabs the clippers.  I was pretty stoic up until this point.  Once the clippers touched my head, I lost it.  I was crying so hard. My hands were covering my face and I was balling.  Deb held my hand and comforted me the whole time.  Thank you Deb.  I couldn't look in the mirror.  I took my hands away from my face and kept my head down.  I didn't want to face this.  But I had to.  I slowly looked up and saw my newly buzzed head.  Is that me?  Really? I immediately thought that I looked like how I did when I was a baby.  When I was baptized in Jordan, they cut my hair so short like a boy. 30 years later I am blessed to look like a 1 year old again in 31 y/o body without the olive oil on my forehead. In a way, this was aother baptism.  To be free of everything and start new. To take these nuggets I learn throughout my journey and take another step into this new chapter in my life.

The wig lady places my new wig on and it was amazing how it looked so natural.  It was me! But I still felt that was not the true me.

Minos, being the superman he is, gets his luscious greek locks buzzed as well.  Oooweee he is so handsome!

I stopped at Mac Daddy.  MacDaddy is the salon I go to and my friend/stylist cleans up my buzz cut for me and cuts my wig to look a little more like me.  We decide not to cut too much off because it won't grow back. Duh!

So a few days have passed and I have been rocking the buzzed look.  I actually am getting used to it.  I did feel weird going into the public, I'm not going to lie.  I felt like people were looking at me. Were they wondering if I was sick? Did they think something tragic happened, like I went mental like Brittany Spears?  Did they think I was a european model? Ha, I didn't really think they thought that last one but I felt self-conscious. I went to a friends going away party and it was my first major public appearance with the new do.  I felt, well, I actually don't know how I felt.  It was different. And I didn't like it.  I felt trapped and I'm not sure why.  I knew I was comfortable with the new look. So I couldn't understand this feeling, and as I write this, I think isolation or alone would be good words to describe it.  Again, another lesson for me that I am still trying to figure out. Another emotion that surfaces.  Another day into this journey. Another day closer to getting better and being stronger. I feel like yelling a "Ooh-rah" like the marines right now!  OooooRAH!

Crazy Sexy Cancer

I was given a DVD and book called Crazy Sexy Cancer by my cousin Freeda and her hubby Ari.  It's a story of a 31 y/o with an "incurable" cancer.  She has 20+ tumors in her liver and both lungs.  She explores alternative methods.  Her treatment plan is "wait and see" and she will not receive chemo and radiation.  She calls herself the "healing junkie".  She ends up keeping her tumors stable with no signs of cancer by adapting a whole new diet (which basically consists of anything from Whole Foods).  I started to read her book and Sheryl Crow has a few pages in their explaining her story.  I relate to a few things she says in the foreword and I will share it with you...

"What I was forced to learn,...was to put myself first. To really honor myself by saying no to things I don't want to do. I have always been a pleaser of the most committed kind."

"My experience was about letting go.  It was really experiencing all that was happening at the deepest emotional level, for that is where the big life changes occur.  That is where you meet yourself...I don't believe you have to be diagnosed to come to these lessons, but sometimes these catastrophic moments in life force you to focus in on the immediate."

It's all about me right now!

Can I Get a BM!?

July 1 2011

Bowel Movement that is! Ugh, if you can't handle poop, then skip this post.  I haven't pooped since Monday. It is the most uncomfortable feeling.  I was getting high-fives monday for having a BM but now I'm getting a "c'mon noreen, you can do it".  The past few days have consisted of of Miralax and Dulcolax which should produce a GD poop! Today, I am drinking Magnesium Citrate, a "Sparkling Saline Laxative" as the bottle reads. 6 hours later, still no BM! Oh dear lord! Can I get a BM?!!

(video of me trying to "exercise" to get a BM, Minos making fun of me, Deb laughing, and To Be Loved playing in the background)

I'm too young for this....

June 22 2011
Round 2 of chemo.  I am with my sister Helen and my bestie Rachel.  I feel more comfortable this time around.  I know what to expect.  I am ready to get better.  Diane, the nail polish nurse, didn't bring up my nail polish again, however she commented on my Toms and said those were some funky shoes.  I love my Toms!  My counts are low which is expected.  My WBC dropped to 1.2  and my Neutrophils to 0.2.  Normal range for theses are around 3.5- 10.5 and similar range for Neutrophils.

Anyway, I had the opportunity to get connected with another cancer patient.  I call her my angel.  Northwestern sets us up and we immediately connect.  We learn we have mutual friends.  She has Grey Zone Hodgkins.  She had her last chemo round in May and is cancer free.  She invites me to this event where cancer survivors speak out on June 23.  I go with Amy.  This is the day after chemo and I am feeling pretty good.  I have a moment after they play a video of 20 and 30 year olds, cancer patients and cancer survivors.  I cry. At this moment, I feel that I am closer to the reality of having cancer. I had cut my hair earlier that week and felt defeated in a way.  Again, a step closer to the reality of all of this.  It's all still new to me. I am sick. I have cancer. I am a cancer patient. It's weird saying because I often don't believe it. Then I say,  I am so young. Why me? It's crazy that I am entering this new world of cancer. You become this VIP of life. There are so many people that have been touched with cancer. It's awful.  This disease sucks! But we move on with our lives.  I will soon say, I am a cancer survivor. And go about appreciating life even more.  I look forward to that day but have been reminded to think in the moment.  Focus on each day as it comes.  I can't afford to waste energy on "what ifs", "how come", and "what will happen next."

The weekend after chemo, my symptoms kick in.  Still no vomiting but extremely sore mouth and fatigue.  It hurts to eat and drink.  I am broken mentally because I hate how I feel.  I speak to my angel, Jenna.  She reminds again that it's ok to feel down. That this is a roller coaster. And that again, I should focus on each day and look for the life lessons that come along with it. I am so grateful that she is my angel.

Infusion time!

In preparing for my first chemo session, we get hit with the hottest day of the summer.  We don't have our ac units up.  Amy, being the wonder woman of a roommate she is, gets the AC units up and sterilizes the apartment.  I put all my goodies in my chemo bag (cherry gingham bag that cooper let me borrow). The bag contains:
Black Ninja (stuffed toy given by Cooper)
Lemon Drops (thanks Jenn)
Wonder Woman Barbie Doll (thanks Rose)
"Believe" card (thanks Jenn)
White blanket with the those ball thingys (thanks Jamie)
Lip Balm
MacBook
Picture of my dad

Also, I have been playing phone tag with my cardiologist to hear the results of my Cardiac MRI. On the last vm from her she says to just page her when I get in for chemo.

June 8 2011

Good morning chemo day!  Minos takes me to my first infusion.  He keeps me laughing and distracted so that's good.  I check in.  I get called back to get my blood drawn to check my white blood cells, neutrophils and such.  20 minutes later I get called back and get taken to my room.  As I am walking back one of the nurses, Diane, comments on my blue nail polish.  Then Minos had to mention my toes were painted purple.  Diane was not having it.  She went around and told all the nurses that my nails weren't matching.  Seriously?!  It was actually funny and I am leaving a few things out:)

I walk into my room.  I set my table up with all the goodies from my bag and call it my inspiration station.  I meet my chemo nurse, Celia, for the first time.  She actually went to school with Minos so it was quite entertaining to hear some stories.  I page Dr. R, my cardiologist. Celia preps my arm and starts my IV and gets me going with the anti-nausea meds.  Dr. R calls me back and explains the results of my MRI.  The tumor is not pressing on the heart and my ejection fraction is low again.  She explains now that we have 2 tests confirming a low ejection fraction and she is wondering if my coronary arteries are "hooked up" wrong.  This could be something I was born with.  She wants to do a CT scan of my coronary arteries to see if that is the problem.  She explains she thinks there is a small chance I have this issue and actually thinks that the disease in the area may be causing the low ejection fraction.  She thinks once treatment continues it should go back to normal and that I will need another echo in August to assess the heart again.  She then said her nurse will call me to get the CT scheduled.

I finish my anti-nausea meds and my heart meds.  It's time for chemo.  Celia first puts a sample of the Bleomycin in to see if I have an allergic reaction to it.  It's all good.

I get a call from the cardiology nurse and end up having a 30 minute conversation with her as to what I am supposed to do and next appts and such.  But as I am talking to her, Celia is waiting to administer my next chemo med Adriamycin which has to be administered by her.  I am overwhelmed with all the information about my heart and anxiously waiting for the chemo to begin.  They really should have explained all of this to me earlier but it is what it is.  Finally, I am done with the heart nurse, take a deep breath, and tell Celia, I am ready! We finish the rest of my session.  Minos takes me home.  I am feeling great.  I am shocked that I ended up having all this energy.  The chemo instantly took away all my muscle aches.  I couldn't believe it.  I thought to myself, this is some crazy shit!  I ended up making up 3 songs (they are not that great) but it just showed how well I was feeling.  The following day, I worked a full day.  Friday, the symptoms started to kick in.  Just some fatigue.  Saturday through Monday, my mouth felt like I had a mouthful of canker sores with no actual sores.  It's a common side effect.  Other than that, that's all I experienced.  I bounced back that week and got prepared for a huge work event for  Friday that I have spent the last four months planning.

During the following week after chemo I also had the CT scan of my arteries.  Since I get sick from CT scans, they put me on Prednisone.  That drug kept me up all night.  I had maybe 3 hours of sleep.  Amy takes me to my scan.  I get poked once again with needles.  They bring me in and I am laying on the bed of the machine.  They are giving me beta blockers to help bring my heart rate down.  My heart rate has to be in the 60's range for this test.  Right now my heart rate is jumping from 80-100.  My BP goes down to 93/50.  I am freaked out.  They are trying to calm me but the funny thing is they were annoying me more than calming me. Ha.  I knew I had to relax.  So when you keep saying we need your heart rate down, doesn't really help.  I also start thinking of my dad and the night we lost him.  My low blood pressure triggered that memory.  His nurse at that time said once we see his BP (diastolic) drop into the 40's he would slip away fast so be prepared.  I couldn't get that thought out of my head and remembered all the emotions I felt that night. I took a few deep breaths and refocused. They pushed more beta blockers and gave me saline to try to balance out the BP and heart rate.  They decided to go forward with the test even though my heart rate was in the 70's.  I hold my breath (I have to for the scan), I am nervous of throwing up again, they do the scan.  I am all finished.  I didn't throw up!!  Thank God!  They said they got some good images.  Thank goodness because I did not want to go through that again!  They put me in the recovery room and I wait 30 minutes before I am discharged.

Dr. R calls me and says that my arteries are hooked up just fine.  And says we really don't have an explanation for the low ejection fraction and we will recheck in August.  Alright, now I have this heart thing sorta figured out and now I can just focus on my treatments and getting better.  Things should get better.  I have read that the hardest part of all of this is the preliminary tests.  So far, I would agree.  I am just glad that all the tests are done and we are not waiting on anything anymore.  It's time to get better, focus on chemo, and take it a day at a time.