It's NOT Just Hair - July 22, 2912

"How can I control my life when I can't control my hair?"

Life is challenging. Each of us takes the journey of life facing challenges along the way.  Sometimes, these challenges come one after the other.  It has been a crazy month and 2 days.  This includes the reality of my cancer returning, surgeries, chemo, pain, but the challenge I face this week is one of the harder ones for me.  Part of me feels vain for even being upset by this, but I can't change the way I feel. My scalp starting tingling the past few days and it will probably start to hurt soon. I was holding on to the hope that I'd have the miracle of not losing my hair this time around. No such luck. 

Most women never have to think about losing their hair.  Society puts such a huge emphasis on hair.  Products, accessories, salons, magazines, commercials, etc.  I put a huge emphasis on my hair with all of those things.  We get upset about bad hair days and bad haircuts. We grumble about it, we fuss over it, we take it for granted.  We make appointments for our hair, but forget to make doctor appointments.  It is estimated that we spend $160 per year on shampoos and conditioners, $120 on styling products, and $520 on haircuts.  If you color your lovely locks, add an additional $330!  The money is one thing, but the time we spend on our hair is even more.  We girls spend an average of one hour and 53 minutes a week washing , blow drying and styling our hair.  

So, please don't say "It's just hair."  For me, hairloss is a loss of identity, self-esteem, and an emotional roller-coaster, it will be a daily reminder that I have cancer.  Even on the good days, I will look in the mirror and be reminded that I have cancer.  Even when I'm done with treatment, the cancer is gone, and I am feeling well, my hair will remind me of the journey.

I clearly remember the last time I went through this process.  The first day that it started to fall out was also on a Sunday.  I was working for Harrah's and we had a group of customers in a skybox for a Bears game at Soldier Field.  I looked in the box next to us and saw Todd Leonard.  Todd was my high school boyfriend who has always remained a friend.  He was at the game with family for business.  He made a motion to meet them in the hallway to say hello. I walked out to chat.  We all stood there for a bit talking and I happened to run my fingers through my hair.  All I could feel was a clump of hair in my hands, so I kept my hand in my hair while talking, ended the conversation quickly, and walked to the bathroom to cry.  I don't know if I ever told him that story, but I will never forget that day.

I brushed my hair this morning...the process is begining...please give me the strength to make it through this week.  Steph's text -  "Any signs of it falling out?"  My response "just brushed my hair. :(" with the picture below attached.  Steph - "Darn it...one more hurdle to jump, right??  Together!!" with a thumbs-up emoticon.  

It's the first day that my hair is falling out.  :(

I can't help but cry.  I hate my reality.  I don't even like my hair all that much, but it's MINE!!  And cancer is taking another thing away from me.  I think I'll crawl back under the covers for the day.  Bed didn't last too long as I decided that a pedicure sounds like a much better option.  I'm sitting here writing this on my iPad, getting a pedi and looking across the room at a lady who has a shirt on the says "It doesn't matter what you call 'em...just check 'em!"  Pretty appropriate for the situation.  So, ladies...go check 'em!

XOXO, 

S

PS.

If you or a loved one are facing hair loss from cancer, please consider reaching out to the American Cancer Society.  We supply wigs, free of charge, to those battling cancer.  We also have a great program called "Look Good...Feel Better".  Visit www.cancer.org for more information or to find an ACS location near you.

I'm Leaving On a Jet Plane...July 19 & 20, 2012 (part 2)

Thanks for stopping back for Part 2.  I'm sure it seem like Part 1 took days, but it really only covered a few hours of the trip.  Here are some more details...

After AnnMarie spoke there was an interesting video from a young cancer survivor from Australia.  The challenges she has faced are unbelievable.  I wish I could find the link to the video, but I can't seem to locate it.  (This just in...Adam Schwartz read this blog and sent me the link to the video and reminded me that her name is Amanda...http://www.youtube.com/watch?v=uINoQPOqV8k&feature=g-all-f   Thanks, Adam)  There are no spoken words, simply writing on a piece of paper and expressions on her face.  This young girl has looked death in the face too many times! Once the video is done she appears on stage.  Her spirit is amazing!  She talks a lot about having HOPE...that little word that shows up so often, but means so much.  Her message was a message that so many could relate to.  Linda walked by me once the speech was complete.  She simply gave me a hug and said "Do you have hope?"  I nodded yes.  Yes, I have a great deal of hope.  It gets intertwined with fear and despair, but I have hope.  Later in the evening Amanda gives me a sweet gift of a vase with flower pins...it says HOPE down the side...see, I have hope!

The entire group was then bused over to a local college campus to have "Olympic Games", Relay style.  The entire thing was ridiculously funny.  It is one of those things that is difficult to explain.  Adults and college kids dressed silly, making up cheers about cancer, wearing Relay gear, everyone division in a different colored bandanna, etc.  Put it this way..the Illinois Division cheer was "Check Your Colon!"...I pulled out moves from my Spiritline days and taught the staff and volunteers.  Don't get too excited.  It was only three moves, but it did end with jazz hands.  We so should have won the team cheer, but it is hard to compete with a division that can include uterus in their cheer.

Things were going well.  I was involved with everything and having a good time.  Then it was like somebody slammed the door in my face.  I hit a wall of exhaustion.  It was like every ounce of energy was sucked from my body.  I couldn't help but get angry at my body that was working against me.  My breast had started hurting and I started to panic. I needed to get out of the crowd because panic was setting in.  I made it to the top of the stadium, but I was embarrassed, angry, sad, tired, sore, etc.  Keri came up a few minutes later and I broke down.  I don't like people to see me be weak, but I had no other choice.  Then my work WE went into full gear to try to get me out of the stadium, back to the hotel, and back to my room.  I just needed rest.  Keri worked on getting me a cab, Staci helped, Karen came to see how I was doing, and Ann tried to keep me calm.  I felt terrible because they were all missing the fun, but I can't thank them enough for helping. We waited and waited, but the cab never came.  Fortunately, my tears subsided and my anxiety calmed.  Finally, a bus was getting ready to return.  I was able t get on the first bus, get back to the hotel, and go to bed.  I was bummed that I was so beat up because I really wanted to spend some time with Cyndi and Katie, but my body seems to be calling the shots these days.

I skipped breakfast in the morning.  I was feeling beat up so I stayed in bed a little longer.  Everyone understood.  We had another couple of general sessions that day.  More great speakers and more time to see friends from across the country.  The hotel was so large and the group had over 1000 people in it, so I didn't get to see everyone that I had hoped to run in to.  Once the last general session was done we all said our goodbyes and people started heading home.  We had a few hours until our flight, so we took our time.  Danielle sent a text to come say goodbye, so Staci was kind enough to grab my luggage so that I could walk to see Danielle before we all headed our separate ways.  I went to the bar where some Florida people were having a meeting.  I spoke with Stephanie and Danielle for a few minutes and then I needed to leave.  Danielle gave me the biggest hug ever...again, two non-huggers hugging.  I almost broke down, but managed to hold myself together.  It's not goodbye...it's see you later!

I didn't get to say goodbye to so many people.  I didn't get to say thank you to so many people.  We have AMAZING staff and volunteers at the American Cancer Society.  I am lucky to know that millions of people around the world are fight this damn disease.  THANK YOU to each and every one of you!

Once we arrived at the airport I was able to get on standby for the earlier flight.  This would allow me to get home a couple of hours earlier.  Best $64 I have spent in a long time.  I was the last to board the plane, but there was a seat next to Deb so I didn't have to squeeze in between strangers.  Deb and I chatted the entire way home.  It was good to learn more about her and hear about her life...a little over an hour that had very little to do with talking about cancer.  A much needed vacation.

I walked out of the airport with Karen, another ACS staff.  Karen is also a breast cancer survivor.  We didn't long to chat, but what she told me of her story is amazing...breast cancer while pregnant...it has been 15 years.  She is a huge inspiration to me.

While I couldn't wait to get home, I stopped at my parents on my way.  Mom and Dad have a new kitty that I really haven't seen and I wanted to tell them about the weekend.  I caught the kitty and held her on my lap and then we all talked.  I really don't tell my parents all about the things that happen when I travel or when I go to events, but I wanted to tell them the story of Ann Marie.  I could hardly speak, my voice was cracking, and tears were rolling, but they need to hear about this amazing Mom and the impact that she had on me...on us.  We all cried, but it was a good cry.  It's the first time that we all sat and talked about things and its the first time we cried together.  My parents may not have laws created for me, but they would move mountains for me, they would go to the ends of the earth for me.  They are my everything!

Time for bed.  I've been awake more hours in the past three days than I have in the past month.  Hey, Katie Paulson...where is my Rosetta Stone for Southern Accents?????

XOXO,

S

The AWESOME staff and volunteers from the IL Division.  Thank you all for your support!  
Check Your COLON...it's not balls people!

Me and Amy - Check UR COLON.  Always good to know your punctuation!

Me and Katie.  She has so much energy!!
She makes me smile and this was right after one of the toughest parts of the day!

Guest Blog Spot - From One of My Divas and Best Friends - Gina Tacchia - written on July 25, 2012

“ You’re only as strong as the tables you dance on, the drinks you mix and the friends you roll with.”

Hello!  After a few weeks of writing the blog I offered the option for a few of my girlfriends, my Mom and sister to write a "guest blog" about the day they joined me for surgery, doctor appointments, or chemo.  This entry is from Gina Tacchia.  She and I have been the best of friends since college (don't ask her for an interview because she will deny it...funny story for another time).  We've been through the great things in life and some pretty tough moments.  I was in Gina and Jim's wedding, there to celebrate the pregnancy and birth of their beautiful daughter Emma, and I've been an "honorary member" of the Ragusa family for as long as I have known Gina.  She is one of the kindest people that I know, she worries to much, over-thinks things more than I do, she sends the funniest text, can always find a pole to dance on, has a great snort, washes her hair  times a week, is a wonderful Mom, and her alter-ego is "Stella". To know Gina is to love her...and that comes with all her quirks!  I guarantee you she took too long to write this and double checked her spelling again and again.  We tease Gina the most because we all love her (and she makes it pretty easy).  Gina and Jim are one of the funniest couples when they are hanging out together and I love when he says "Geeeeeeennnaaa"...to one of her MANY Gina-isms.  I so wish she would have sent the below via text so you all could "try" to read it with me!  :)

Seriously, I don't know where I would be without Gina, her love, her family, and our laughs.  Gina is like a sister to me...these are her words...

“ You’re only as strong as the tables you dance on, the drinks you mix and the friends you roll with.”

"With that said, I am feeling pretty strong.  I roll with one tough cupcake. (I know it should be cookie, but we all know that Sue is a cupcake girl.)  I know that Sue said that she is not brave.  Well sometimes friends see the things that we don’t see in ourselves.  With her strength and courage, Sue inspires me to be a stronger person.  I think that each time we face fear; we gain more strength and courage and become stronger.  While I wish she were strapping on her pink boxing gloves (damn they’re cute) to gain more strength in her kickboxing class, she is instead building her strength and courage kicking cancer in the @*#!  Remember, our gloves are on, and we stand in your corner ready to fight!

As I get started I want to apologize for jumping around, leaving something out or any errors.  I am not the amazing writer that Sue is…I am Gina and if you remember, texting can prove challenging for me. J

I remember when the text came through.  I just stood and stared at my phone in disbelief.  Am I reading this correctly?  This can’t be true.  WHY?  WHY AGAIN?  Well, while I knew it didn’t sound good, she still hadn’t had the mammogram and ultrasound.  I was praying and still holding on to hope.  Unfortunately the news that came later wasn’t the news I had been praying for.  Tears began to fall.  This is a road that must be traveled along again.  Can’t we put a sign up that says “ROAD CLOSED?” 

The waiting was filled with many emotions… sadness; worry and fear were among those felt.  I wanted to be strong and be there for whatever she may need.  I knew the emotions that I was feeling and knew they didn’t even compare to the ones she was feeling.  Many texts and calls were exchanged over the next few days.  I remember being thrilled when I heard that it was the “good” cancer.  Wait. That seems strange.  How can I be happy?  It is still cancer. But it was the better of the two, and in this case, that was good.

I will jump ahead to July 11, 2012 ~ “Time for Cocktails.” 

The day was here.  The fight begins.  When Steph and I arrived at the hospital, we found Chris in the waiting room.  Sue and her mom were meeting with the doctor.  We were updated and patiently waited to see Sue before “cocktail” hour.  How I wished I could wave a magic wand and change the location to cocktails in Oakbrook with a little shopping afterward, instead of our current location…that will have to be postponed for another date.   I sit and see the bag Sue has packed for US… just as she did for the “emergency lumpectomy.”  We are here to do this for her, and yet even as she is facing one of the toughest challenges life has to offer, she never stops thinking of others.  That is Sue.  Sue and her mom come out…and what is this???  Didn’t this girl just have surgery??? She was looking cute as ever.

We sat and waited for Sue’s name to be called.  We laughed a lot, which helped.  They say laughter is the best medicine.  If that is the case…she can laugh with me or at me, as is the case most of the time, any time. Ha! After her name was called and we exchanged hugs and kisses, Sue and Steph went back.  Steph was a good choice.  She is so strong.  Have you seen that girl’s biceps?  She may give Jim a run for his money. As I was feeling my eyes fill with tears, I did not want Sue’s mom to see me cry and add to hers so I quickly excused myself to find a bathroom.  I wiped my tears, said a prayer and returned.  After I returned, I chatted with “The Twins,” as Sue likes to call them and also with her friend Jennifer.  Time passed and I was able to go in and sit with Sue.  I was glad to see she was doing better than Steph had shared.  We sat and shared and before you know it “cocktail” hour was over.  Sue would be heading home.  I am glad I was able to be there.  I hope I helped a little.

  

Seeing her feel so bad in the days that followed were tough.  How I wish I could just make her feel better.  Well, I hope that you know that I am here for you.  I love you with all my butt.  Yes I said butt…that’s because it is BIGGER than my heart.  You see when I dance on the tables; they have to be pretty strong!

I write this before heading out to Sue’s head shaving “party.”  Again, many tears and emotions.  I can’t imagine the fear she is feeling, as she will lose her hair, but I know she already gained more strength and courage.  I look forward to meeting Zara tonight.  “Stella” would love to borrow her pole sometime."

Thanks, Gina!!!  I read this right before I posted it and I cried the entire time.  Thank you for being so strong and brave for me!  LOVE YOU!!!

XOXO,

Sue

I'm Leaving On a Jet Plane...July 19, 2012 (part 1)

"Twelve hours.  It can stretch out forever when you are waiting to hear the results of a biopsy.  It can literally evaporate when it's the last hours spent with a loved one.  Or, it can bring hundreds of people together in the fight against cancer through Relay For Life." - Sheila Blakenship

I woke up and feel much better today. I'm not 100%, but I know that the trip to Nashville will help my spirits and the RFL Leadership Summit is where I am supposed to be. This is a big part of my job and I get to see so many friends, staff, and volunteers from across the country. As I said in my last post, my doctor does not want me to fly. I've struggled with that since the first time I met with her and I have put so much thought into this decision. I do not want to put my health at risk, but I do know that this trip will be a good couple of days for me. This trip will allow me to have a little bit of normal in the middle of this craziness called cancer. If I put my mind to something I can make it happen. I have to decided to go on the trip. It is an hour flight, the airport is small, the hotel is close the the airport, and the people are AMAZING. I need to be there...I belong there! Off the Midway I went. It works out well and I have other ACS people on my flight. Typically, I prefer to travel alone. It just makes things easier, but I was glad to have some friendly faces there. Keri and I met up in the parking deck. We had both gotten stuck in traffic, but we had plenty of time when we arrived at the airport. We headed in together. I was pretty tired when I got out of my car. It made me nervous going because I was already exhausted and we had 16 + hour days ahead of us. I checked my luggage and only had my purse with my iPad in it. I couldn't carry much because I have now had procedures on both sides of my chest. We made it through security and started heading to the gate. Once on the moving walkway I thought I was going to pass out. The fog was setting in and the world was moving around me. I did my best to hold myself together and catch my breath. A couple of the other girls were already at the gate. Marie had a sweet gift for me, a "Keep Calm and Eat Cupcakes" mug. It is adorable and perfect. I grabbed a little something to eat and we waited to board. The fog was continuing to settle in, so I headed to stand in line. I didn't want to the girls to realize that I couldn't focus. I couldn't be a part of their conversations. I was doing all I could to stay standing. Did I make a mistake by deciding to go to Summit?

Once on the flight we had a long wait and now I am getting nervous about the germs. My quick hour flight has just gotten longer. Finally, we arrive in Nashville. I was starting to have a panic attack and I couldn't get off the plane fast enough. Half way up the walkway to the terminal I realized I had left my iPad on the plane. I freaked out and felt terrible. People had gone out of their way to give me an amazing gift and I already left it on the plane. I ran back...I haven't moved that quickly in a month. It is still sitting in my front seat, the flight attendant grabs it for me, and I make eye contact with Keri...CRAP...I'm busted. I feel like the biggest ass for leaving it behind, but I have a huge sigh of relief that I have it back. I told the girls not to tell anyone, but I feel guilty so I'm busting myself out here. Darn Catholic guilt!! It follows me everywhere.

Danielle is waiting in baggage claim when we get there. Danielle and I met years ago when she worked for ACS in IL. She now works for ACS in Florida. Danielle is a great support to me and has been for years. We just have a strong bond, can talk about things, and have a solid friendship. Neither of us are "huggers", but we had a big hug at the airport. It was great to see her and I look forward to spending time together this weekend. Danielle had a ridiculous amount of luggage so that lightened the mood when I was able to tease her. Had she not had that luggage I am sure that I would have cried. I'm exhausted, I'm emotional, and there's a good friend with a big hug...the tears would have been flowing! We then waited for Barb to arrive and grab her luggage. Barb works for ACS and lives in Iowa (Go Hawks!). Barb is also a young breast cancer survivor, so we have a natural bond. Us BC Girls need to stick together! There's a pretty large group of us at this time, so we grab some cabs and head over to the Opryland Hotel. Barb, Danielle, and I were in the same cab with a couple of Barb's co-workers. Barb and I had a chance to talk a little about breast cancer and then she gave me a couple of things to help me with my journey. Barb understands my odd love for sock monkeys, so one of the items is this adorable sock monkey coaster. It matches the sock monkey pillowcase she made me a few months ago. Barb also shares my love for Pinterest and she actually makes some of the crafty items that she pins!

Upon arriving at the hotel I realize that I am in BIG trouble. This place is HUGE...I mean this is the largest hotel/convention center that we have ever been in. My body hurts and now I am going to be walking miles upon miles. This should be interesting. We check in and start heading to drop off our bags and then we need to get lunch. On the way to my room I saw Stephanie from PA and got a big hug. Stephanie is one of the strongest ladies I know and is a huge inspiration to me. Her hug is comforting...not a "oh you're sick hug", but a "hey, great to see you hug!!"  Next stop, Danielle's room to drop off her ridiculous amount of luggage. She had a card and gift for me from a friend of hers that I have never met, her name is Mariagnes. A tube of lip gloss! Perfect..."slap on a little lipstick...you'll be fine! The card made me emotional because it is amazing that someone who I don't know would be so thoughtful. I read it again late that night and cried from her kindness.  Clearly, Danielle is lucky to have great people in her life....not just me!  :)

Now the mile long walk to my room and then back to the lobby for lunch. YIKES...this place is HUGE.

We all had lunch, had some great laughs, got some work done, and then we would head to dinner with our IL staff and volunteers. After lunch I had the opportunity to register and see some dear friends from across the country. Great hugs from great people...hmmmm, maybe hugging isn't as bad as I have thought. I hate that I don't have the energy that I usually have at Summit. I feel like I'm barely going to make it through dinner, but I sat with some great people...Stephanie, Chel, and Chris...then Steve showed up looking like the ultimate tourist with a camera around his neck. Steve just makes me laugh when he walks in a room, so it is good to see him. I ordered something that was too spicy, so Steve was happy to eat most of it. Next stop BED!

Friday started off super early. Days at Summit start at 7 AM and end close to midnight...there's no rest when you're figting cancer. Breakfast gave me the opportunity to see people that I don't get to see regularly and people that I really care about from around the country. I even got a hug from someone who didn't used to care for me...first thought...CRAP...somebody must have said that I am REALLY sick! :) As much as I love seeing everyone, it is so overwhelming to be at Summit and I know that the emotions are only going to get higher because we are heading into the general session room.

Picture if you will, a giant convention center ball room that holds over a 1000 people, the music is thumping, beautiful pictures are scrolling on the two large screens on either side of the stage. People are dancing, pictures are being taken, people are standing on chairs. The energy is as high as I have ever seen it at Summit. Staff and volunteers for the American Cancer Society are in the house and are ready to go with a two day training. I've always considered Summit to be like a giant pep rally for the coming year and this was the biggest that I have seen in my years with ACS. Every year I walk in to the first General Session and I get a little verklempt, but there is nothing that can compare to the emotions that I am feeling this year. I choke back the tears and try to hold myself together...deep breaths...deep breaths...no eye contact...no eye contact. And this genius forgot to bring my tissues...who gets to Summit and forgets her tissues in her hotel room?? Especially the girl who has been crying everyday for the past few weeks.

I could go on and on about all of the people that spoke, the great job that Ron & Brian did, how amazing William (Marty) was on stage, the wonderful job that the production committee did, etc. But, I would like to focus on a few speakers that spoke to my heart and to my journey.

First was Udie. She is a young cancer survivor from Zambia. She talked about her battle with cancer and how lucky she was to be sent by her company to get treatment in another country. Zambia has 14 million people, but they only have one cancer center and a small handful off oncologist...it opened in 2007. I thought about how fortunate we are in the US.  How we do not need to hide in shame because we have cancer. How I can pick any doctor that I want and how I have hundreds of options. If I had a checkbook and extra funds I would have written a check to Udie and the Zambian Cancer Society at that moment. She saw Relay in another country and decided to bring it to Zambia...she dreamed big and made it happen. A collection was taken for Zambia and I made sure that the "spending money" my Mom left on the counter went to Zambia's battle against cancer. Tears ran down my face while she spoke...thank you, Mandie for letting me use a bandana to wipe my tears.

We then headed to breakouts and I had a chance to see some other friends. The next General Session has a survivor and caregiver focus and I have decided that I am not prepared to handle it emotionally. I chatted with a few people in the hallway and then Danielle tried talking me into going to the session. I cried. I was overwhelmed with all the emotions of the day, tired, and sore. I decided to head to my room for a "nap". As I walked and cried I heard a sweet voice asking if she could help. Kari was over my shoulder and there to give a great hug. Kari is like a little sister to me. One of those people that I am proud to know and someone who inspires me greatly. Kari had her own battle with cancer in high school and has taken that challenge in life and done great things. We talked for a few minutes and I cried some more, but she helped me pull myself together. I still decided to head to my room. I walked about half-way there and thought to myself  "I'm stronger than this!  I can handle this!" So, I turned around and headed to the room. I decided that I would stand in the back just in case I needed a quick excite. I found a little corner that could hold me up. A few people tried to get me to take a seat, but I really just need to not speak, not to make eye contact, and just do this on my own. Danielle is texting me to see if I need tissues and then sends Stephanie from FL to deliver them.  Stephanie is so perky and sweet.  I couldn't help but smile.  I had taken a half of roll of toilet paper to use, but the tissues were much better.

The woman that was speaking at the time I came in the room was AnnMarie Morse. Please allow me to tell you about this amazing Mom who opened my eyes to the love of a mother and the battle that my mom endures because I have cancer. AnnMarie Morse is the power behind Michelle's Law. If you have children or if you are a student, you should thank this Mom for making an impact on your life.

This information is taken from the Michelle's Law website... "NH House Bill 37, also known as “Michelle’s Law,” came about when AnnMarie Morse’s daughter Michelle, a full time student at Plymouth State University, was diagnosed with colon cancer.  Knowing the toll chemotherapy treatments would take, Michelle’s doctors strongly recommended that she cut back her college course load. That’s when the Morse family discovered that they were caught in a terrible catch-22.  If Michelle cut back, as her doctors recommended, she would either lose her insurance or would have to pay C.O.B.R.A.  The premiums for C.O.B.R.A. were approximately $550 a month (not including copays), would be more than the family could afford.  As both a parent and a teacher, AnnMarie felt that students like Michelle should be allowed a brief medical leave (up to 12 months) during which they could cut back or leave college to concentrate on their health needs – without jeopardizing the insurance they rely on for their treatments.  With the help of some legislators, and backed by a number of medical and professional organizations, AnnMarie Morse took the issue to the NH legislature.  On June 22, 2006 New Hampshire became the first state to pass Michelle’s Law.  Since then, 10 other states have passed some variation of the law.  On October 8, 2008, President George W. Bush signed H.R. 2851, making Michelle’s Law a federal law effective October 9, 2009. Michelle’s Law Michelle’s Law allows full-time college students to take up to 12 months medical leave. Michelle’s Law applies to students who are covered under their parent’s health insurance plan. “Medical leave” can mean that the student is absent from school or reduces his/her course load to part-time. The date the medical leave begins is determined by a student’s physician. Signed into law on June 22, 2006, the legislation was officially named “Michelle’s Law” and took effect immediately."

Sadly, Michelle lost her battle with cancer on November 10, 2005, but I know that she was in the room today.

Tears ran down my face while listening to Ann Marie. I will never know the pain that a parent feels when their child is ill. The helplessness that must go through them. But I do know the love of parents that would do anything for me. I think God made sure that I was in the room to hear Ann Marie speak. To hear the message of a mom that would move mountains for her child. To hear the pain in her voice as she talked about the beautiful young lady that Michelle was. To see her look to the ceiling while the crowd stood and clapped when she was done speaking. You see, I'm hard on my Mom. I try to be so independent and try to act like I don't need any help. I push her away when I should bring her in close. Ann Marie opened my eyes to a mother's pain when their child faces challenges. I may be 41 years old, but my Mom needs me to need her. I can't promise that I will be perfect, but at the moment that Ann Marie was speaking I heard my inner voice tell me to be gentle with my Mom and let her love me. I also thought that it is ok to let her see me when I am struggling, crying, in pain, or just plain angry with this damn disease....

I found the strength to head to one of our division tables.  I couldn't really make eye contact with our group.  We were all asked to fill out a luminaria bag.  I honored my parents on mine.  Others put my name on their bags, but I just couldn't really look.  I got a lot of photo text to me with luminaria bags with my name on them that day.  Many in the room and several from events across the country.  It was like a giant hug.  Luminaria bags are a symbol at Relay For Life.  Each luminaria represents a person that has been affected by cancer.  It was like I was getting a giant hug of support that day.  When they asked the survivors to stand and hold their luminria bags, I stood there honoring my parents.  I looked forward...no eye contact...deep breaths.  I cried, but I know that I am loved and I know that I will be ok.

I'll finish writing more in my next entry...this one is getting too long and I'm crying thinking about how lucky I am to have the parents that I do. I wouldn't be alive without their love and support. I have never made it easy for them. but they love me nonetheless.

XOXO,

Sue

A poem that is on the Michelle's Law website:

A Mother's love is something that no one can explain, It is made of deep devotion and of sacrifice and pain, It is endless and unselfish and enduring come what may For nothing can destroy it or take that love away . . . It is patient and forgiving when all others are forsaking, And it never fails or falters even though the heart is breaking . . . It believes beyond believing when the world around condemns, And it glows with all the beauty of the rarest, brightest gems . . . It is far beyond defining, it defies all explanation, And it still remains a secret like the mysteries of creation . . . A many splendoured miracle man cannot understand And another wondrous evidence of God's tender guiding hand.

- Helen Steiner Rice

http://www.michelleslaw.com/index.php

I Need To Start Feeling Better Soon...I Have Places to Go and People to See! July 16 - 18

"Chemonesia - loss of memory as a result of...what was the question again???"


Chemo is kicking my butt this time around. I'm usually an early riser, but I stay in bed until a few minutes before I have to start working. I'm fortunate to work remotely for the American Cancer Society. This week I am home for 3 days and then I'm off to Nashville for the ACS Relay For Life National Leadership Summit. This is one of my favorite events of the year and I have every intention of getting on a plane to enjoy the experience with people across the world. There are only a few things that are making me wonder if I will make the trip...I was told not to fly during chemo, I'm not sure that I can handle the walking at the hotel, my body hurts everywhere, it is an emotional event, and my stamina has hit rock bottom. It is Monday, so I have a few days to decide on what I will do. 


 Monday is full of conference calls and catching up on work. Dad made is daily visit and stayed for a bit while I was on a call. I always have the phone on speaker and usually keep it on mute unless I am speaking...Frank LOVES "speaking" on conference calls, so I have to try to keep him from being vocal. When the call was complete, my Dad simply said, "You're on the phone a lot...they do a lot of talking." It was just a funny statement because he is correct. We spend a lot of time on calls to get stuff done. I can usually remember conversation on calls, but I had to write a lot of notes today. One of my biggest frustrations this past couple of weeks is that I am having a tough time thinking of words or completing strategic thoughts. This is not a part of my norm. I am frustrated with the fact that I cannot come up with simple words. I am sure that it is a part of the stress, but it reminds me that chemo brain may eventually set in. I have a mental cloudiness that I cannot explain. I feel like I am spending much of my time in a fog and when I do leave the house it appears that the world is moving around me and I'm not really a part of it. I'm not taking pain killers because I need to work and be product. Fortunately, I had some projects that I could dive into and keep busy. My lunch was spent taking a quick nap. I set my alarm for 35 minutes so that I could rest. I call my nurse after lunch to try to see what we can do to manage the pain. She then had Dr. Robinson call me. She thinks that I am in pain from the Neulasta and a combination of the Taxitere. Apparently, the Neulasta has a tough impact on young, healthy bone marrow. Did she just say "healthy"? I have cancer, but my bone marrow is healthy. We talked about some options for my next round of chemo. Stronger pain killers, skipping Neulasta, trying a different drug, etc. I guess we will figure it all out as we go along. Bed came around 6 PM. I'm not sleeping well, but my body is in pain and exhausted. 


Tuesday is pretty close to a replay of Monday...pain, work, nap, work, bed early. When is the joint and bone pain going to stop. It has almost been a week since chemo. Why isn't it getting better? 


Wednesday started with pain and work, but the pain was getting a little better. Not great, but better. If I had to leave for Nashville this morning I would not have gotten on the plane. I ran to pick up my wig after work. The pain, lack of sleep, and situation have me in a bad place today. I wanted to make sure that I have my wig for the trip to Nashville...just in case. The hair takes up to 14 days to start falling out, but I want to be prepared. I arrive at the wig shop and I am emotional walking in. I'm simply picking up Zara, I'm not trying her on or getting her trimmed. I'm just getting her as a safety net. I give my "cranial prosthesis" prescription to the lady at the counter and the I start filling out paperwork. They then want me to write my credit card information on one of the pages so they can bill me if my insurance does not cover the cost of the wig. This just didn't settle well with me. I'm not comfortable leaving my credit card number, expiration date, etc. on a piece of paper that will be put somewhere in their store. So, I asked if there were other options. The lady did not like my question and tried to convince me that "everyone" does it. I wasn't sold. So, she went to the back to get something and then I had three ladies in front of me telling me that I could not get my wig without writing the number down. My emotions were starting to bubble over and by "bubble over" I mean I am going to start sobbing any minute. I simply say "fine. take the number." and the owner just keeps talking and telling me stuff. I say "I get it. Just stop. You have the number." She keeps going...I'm ready to lose it. GO AWAY from me. You have what you need. Give me my wig so I can get the hell out of here and keep what is left of my dignity. No sooner do they leave the room that I start sobbing and I couldn't stop. Tissues in hand I paid for what I needed, apologizes profusely, and headed home. I cried most of the way because I acted poorly and because I picked up my wig...only a few more days with my hair...only a few more days until I can't hide that I am sick. When I got home I decided to walk to St. Joe's Park to see Stephanie's youngest play in the World Series Baseball Tournament. The ballpark is less than a mile away. I thought that the walk would help me stretch my joints and reduce the pain. I haven't workout since shortly after I was diagnosed, so I wanted a little exercise. It has been hot in IL, so I was dripping in sweat and exhausted by time I arrived at the baseball field. Pizza for dinner, a couple of bottles of water, and I watch the game. Well, I watched two innings. They were the longest two innings ever! The boys were playing well and the score was high. Stephanie and her mom were insisting on driving me home, but I insisted on walking. I was still in my fog while I was at the game, so it was difficult to pay attention. I needed it for me. Before I left Julie gave me a bag of goodies and Stephanie said she would drop them off at my house so I didn't have to carry it when I was walking. It was strange being there. Word had gotten out about my recurrence of breast cancer and I could tell that a few people were giving me the "look". I said my goodbyes and headed home. A storm was coming in and I wanted to make it quickly. I walked and text my friend Jeff most of the way. Finally, I made it. Then the storm came in. Stephanie and the boys dropped off my bag. The gifts and card were very thoughtful. My favorite part was the hat that Julie's mom knitted for me. Once I lose my hair I will need a cap to sleep in and I had asked if she would consider making a baby soft cap...it is perfect. Then the packing began. 


I'm not 100% about going to Nashville. I know it is where I belong this weekend, but I'm not sure that my body or mind can take it. I figure I will pack and then make the call when I see how I feel in the morning. I then decided to post my battle with cancer on Facebook. It is so strange to have social media play a roll in my battle with cancer, but it is. I have turned my page on and off, but I decided that I would make my statement and share the blog. This would allow me to be in control of the situation. People were already talking, gossip was spreading around town, my friends were fielding a lot of questions...I needed to won it and make sure that everyone knows that I have a great support network, I have a solid plan in place, and I am going to be ok...well, I'm not 100% on the last part, but I am getting there. 


Time for bed. It has been a long day and I have to get up early to decide if I am going to head to the airport. Sleep well. 


 XOXO, 


 S

Explaining My Blog...I Just Can't Repeat the Same Journey Twice

"No man ever steps in the same river twice, for it's not the same river and he's not the same man." - Heraclitus


Hey everyone.  I've been thinking so much about the journey lately and the blog.  I think I need to put a few things out there as you all continue to join me down this road...no judging and no need to comment. :)


This is 110% my journey.  I own it.  I'm living it.  I'm trying t navigate the best that I can.  Please don't compare this journey to your's and know that I never compare my road to others.  We all have battles that we are facing in life...someone my have a rough marriage, a child with special needs, a health condition, the stress of being a caregiver, the struggle to conceive, the loss of a child, a job they can't stand...the battles are endless in life.  Now, this happens to be the one that I am living and I'm trying to do the best that I can.   


I think I should give you a little history about me.  I don't trust easily, I don't let people into my life easily, I keep up walls, etc.  I'll move mountains for those I love, I'm faithful to a fault, my friends and family are everything to me.  I was a walking disaster through my first battle with cancer.  I was emotional, exhausted, depressed the majority of the time, I was in a bad relationship, I worked too much to prove myself, I cried daily, I took too many pain killers, too many sleeping pills, drank to mask the pain, tried to be normal, but I couldn't.  I pushed people away and got lost in the darkness of my depression and my disease.  If you were a part of my battle and knew me well at the time...you can attest to this.  I am no braver or stronger now...I am no braver or stronger than anyone else. 


I only have two choices with this battle...take it or let it take me.  You ALL are just as brave!  I'm in awe of my family and friends that stand by my side, deal with me on good and bad days, and love me unconditionally...it's not an easy job.   I've always said that cancer was the best and the worst thing that happened to me because I found how to appreciate how amazing my friends and family were/are at a young age.


I've had several people send me notes and say they wish they knew me better and I take full ownership in that.  I always say that I'm an open-book, but I have been far from that to most.  I keep my life private and my close friendships near to my heart.  I try to make people laugh, say hello to everyone, smile, and then I will show you a little of what is behind the curtain, but not too much.  I had people walk away during my first battle, so I am cautious with all that enter my life and I have spent 12 years guarding my heart.


Some people think I'm bitchy at work, I pay too much attention to the money we raise, I'm obsessed with details of an event, I'm competitive, and hard to please.  You're right, in some ways!  We are in the business of saving lives...I take that seriously and work many hours a day to make my mark on a disease that has taken my loved ones, impacted my grandparents, impacted my parents, impacted my friends, and has now touched my body twice!  It's hard for me to be all warm and fuzzy when I'm fighting a disease that just pisses me off.  I know that's how many people are and I'm softening up, but I'll always have a lot of me in the fight!  Work is emotional for me, so I don't ask a lot of personal questions of people because you'll see me cry.  I was 'raised' in the casino industry...there's no crying there!


So, you're probably wondering "why the heck are you blogging"?  It was 200% selfish when I started the blog.  I thought that it would help me to write it all down and it would keep people from asking too many questions...instant therapy.  Blogging would make it easier on ME!  Instead, I have found that it is helping me and potentially helping others.  You've been laughing with me and crying with me.  You've sent gifts (completely unnecessary), cards, emails, texts, flowers, prayers, offers to help, offers for your husbands to help, etc.  You've let me share my struggles and laughs.  You've joined my WE in your own way.  The blog has given me the opportunity to open myself up to the people that have taken time to read the entries.  I've had over 6000 hits...I don't know if that's good or bad, but I hope I'm helping  someone along the way.  Maybe you've been nicer to someone who is struggling with life, maybe you've gained a new reason to fight cancer each day (we are always looking for great volunteers or fundraisers for ACS), maybe you've gotten your mammogram, maybe you've made a doctor's appointment, maybe you've taken a few extra minutes to relax and enjoy your day...maybe you've discovered cherry cake donuts at Home Cut in Joliet, or maybe you've shared this blog with someone who needs it.


I've stepped in the river twice now, I'm not the same person I was the last time around, and I am going to be in control of this disease.  I can't make any promises about how I will feel, but I'm going to try to stay positive when I can, cry when I need to, and be honest to a fault.  Nothing I write is directed at one person.  It's just me throwing my life on some pages for all to see.  I can't talk about it very much, but I have found that I can write about.  


Thank you for your support!  Thank you for sharing this little blog with your family and friends.  I'll try to respond to emails and texts...I promise I read everything.  I owe so many people thank you cards, responses to calls and emails.  Some days I'm just trying to keep a bit of "normal", some days I'm just to exhausted, and some days I just don't know what to say. 


I appreciate you!!  I know I'm going to be ok...there's not one bit of me that doesn't think I'll be ok.  I've got a lot of people on my side!  THANK YOU!


XOXO,


Sue

If you or anyone you love is facing cancer PLEASE reach out to the American Cancer Society.  Nobody should face cancer alone.   http://www.cancer.org/  or 800.227.2345.   24 hours a day 365 days a year.  WE are here for you. 

Is It Wrong To Stay In Bed For 48 Hours??? July 13-15

"I can't tell if it's killing me or making me stronger."

As amazing as yesterday was, today I'm dragging.  Up early for work, but the chemo is starting to kick in.  It's going on 48 hours today and I can tell that the side effects are starting to show.  After days off for FMLA, I have a lot to catch up on ad it is good to stay busy.  Just one break for "lunch"...or as the nurse likes to call it Neulasta.  I'm lucky to have a Loyola location somewhat near my home.  I can't get chemo there, but I will go the day before chemo to draw my blood and the day after chemo to get ,my Neulasta shot.  Neulasta is new to me this time around.  It was not a part of my regimen during my first battle with cancer, so I really don't know much about it.  My doctor and I had the discussion, but I may have zoned out at this point in the discussion.  "Neulasta is a prescription medicine that can help reduce your risk of infection while on strong chemotherapy by supporting your body's natural defenses.  It does this by boosting the number of certain infection-fighting white blood cells, called neutrophilis.  It acts like the cells in your bone marrow to increase the number of new white blood cells that are formed."  (Description taken from website)  It is an injection that is given approximately 24 hours after chemotherapy...we pushed mine to 48 hours so that I could work a normal day yesterday.  Don't worry, it was a decision that my doctor and I made together...we are partners in this!  So, off to the location I went.  Tired, but ready to go and get the quick shot done with.  I was doing great until I got into the parking lot.  First, it has been hotter than hell in IL the past few weeks and today was no different.  Second, I realized that I really hadn't eaten today.  My stomach was upset and food just doesn't sound good, but I really should have eaten.  Into the center I went.  I walked in the door and it was like they knew me right away..."Susan?  Here for your Neulasta shot?"  "Yes, that's me."  "Okay, take a seat while we get your shot."  So, I sat and waited a few minutes and took it all in. The little center is very nice, but small.  There are 2 people getting chemo and I can see them clearly....my nerves are increasing with every second.  Something that I have noticed since my first surgery is that when I get nervous or the anxiety sets in I get light headed and almost pass out...it must be one of my many defense mechanisms...it fits in nicely with my self deprecating humor, sarcasm, or trust issues...but this one can be a little dangerous and has been happening a lot lately.  I pretty much as for an ammonia stick immediately upon walking in the door of a doctor's office.  It seems to be the best thing to pull me back to reality.  The truth is, I've been walking in a fog for a couple of weeks now and it is only getting worse.


The nurse walks me into a chair and asks if I know what the shot is that I am getting.  Of course, I say "yes, it's Neupogen." Wrong answer, but I was really close...not close enough.  So, she starts explaining the drug and pulling it out of the box...FOG comes in.  I asked for an ammonia stick because I'm ready to "leave the building".  She tells me that they don't have anything like that.  So, I asked for anything that has that strong smell.  She pulled out an alcohol wipe and I started sniffing.  She is looking at me like I'm crazy.  Well, I thought I pulled myself together so I started asking questions.  Why do I ask so many questions in life???  I must have been a handful as a little kid!  She answered and I pulled my port area open on my shirt to get the injection.  Not so fast, you get the injection in your arm.  REALLY?!?!  They made me get a port so I don't have to get poked and prodded but a little over 48 hours later they are sticking a needle in me?  Smell the alcohol pad...deep breaths...I'm about to go down for the count.  Sorry, I'm going to need a minute because I'm about to pass out, again.  She kindly asked if I had a "responsible driver" with me.  Why does that question have to come up again?  I am the "responsible driver".  I said "no" and she scolded me.  The nurse is also going to be my Chemo Nurse once I start at the Loyola Wheaton location and now we are off to a bad start.  Shot in arm, bottle of water in hand, light headed.  I'm a mess.   I waited a few more minutes until I felt good and then I headed home.  To be honest, I'm surprised she let me go so quickly.


Back to work I went.  A normal day of getting things done.  I knew that I needed to eat, but my stomach was upset from chemo, so I roasted a few chicken breast with veggies.  A little bit a food, attempting to learn the iPad, and then bed.  That's about all I could handle today.  Pretty good chance I will have to get one of my girlfriends' kids to teach me how to use this thing...I'm typing on it, but I don't know how to make edits.


Up early on Saturday.  My body is starting to hurt a lot, but I have a few things that I need to get done.  First stop is at Kohl's and my Mom is going to meet me there.  You see, Mom thinks that you an fix anything with shopping and I happen to agree.  Anything can go wrong and my Mom will say "Want to meet me at Kohl's?  I have a coupon.  I'll buy you something."  Who am I to deny her shopping time with her 2nd favorite child?  I arrived at Kohl's a few minutes before Mom and my body was starting to kick back at me.  My purse was too heavy (iPad is in it), my biopsy side hurts, my port side hurts, my bones and joints are starting to hurt.  I grab a cart...it KILLS me to grab a cart because my Mom gets a cart every time we walk into any store, but I need help.  We can be going in to Target for one item and she gets a cart...I just don't understand getting cart at most stores outside of a grocery store.  I can juggle 20 items at Target without a cart, but she needs one each time we walk in.  I tease her about this all the time.  And now, here I am getting a cart at Kohl's...it's like eating crow!  Sure enough Mom walks in, looks at me with the cart, and gets a huge smile across her face.  My comment..."don't say a word about the cart...I feel like shit."  She still smiled.  We don't stay long, but decide to go to breakfast because I haven't eaten.


A quick breakfast where I ran into Dana, Burke, and their kids...a great family that I met through Relay many years ago and the kids are adorable.  I stopped by to say hello, bent down to talk to their little Diva, and realized that I didn't know if I was going to be able to stand up...the joints were getting tight.  But I have a 'date" with my Apple Genius so I need to keep going.  A quick goodbye to all and I start heading to Naperville.  I just needed to make a quick stop along the way.  The Schulers were at a baseball field Bolingbrook and I have not seen Suzanne is way too long.  Henry is playing in a tournament, Bill is coaching, and Suzanne and Frank are watching the game.  I haven't known the Schulers for long, but I have grown to really like them  Bill and Suzanne workout at TMMA.  Suzanne is my favorite partner is Stephanie isn't there.  They both just make me happy, smile and laugh...exactly what I need today.  And let's face it...my cats are Frank and Henry...two of their children are Frank and Henry...clearly we have a bond.  Suzanne and I chatted for a bit.  I knew other people there, but I didn't have it in me to be social.  I was just happy to make the walk from my car to where Suzanne had a chair waiting for me. We talked about my cancer, but we also talked about their upcoming trips and 'normal' stuff...much needed normal!  Henry was having a great game, Frank was hanging out being adorable, and then Mary and Billy arrived...four polite, sweet kids.


I didn't stay long at the game because I have a "date" with my Genius.  A quick stop for water at the concessions stand and back to the car.  I'm moving pretty slowly at this point and the pain is setting in, but I am determined to figure out the iPad.  The Apple Store was busy today, but I quickly had a nice girl to help me out.  Of course when I started to ask questions she suggested that I take one of their 1.5 hour classes that they offer.  I politely decline and keep asking questions.  I have an iPhone, so I needed to get into my iCloud and sync the two. Seems easy, but I had the shakes and I couldn't remember my password.  I wasn't feeling well and the crowd was getting to me.  She was kind, patient, and clearly realized that I wasn't feeling well.  We continued to work on getting me familiar with the iPad and then she handed me off to Bradford.  He's a cute Genius and he also suggests that I take a class.  Please, people...I appreciate that you all have classes for those of us that are not as smart as the iPad, but I can't commit to that.  He starts going through my phone to show me things are pulled up my pictures...WAIT!!!!!!!!!...I have graphic pictures in there..I said this out loud and now he was curios and probably thinking something else.  Little did he know that I had started documenting everything on my camera and have pictures of my f'd up body on there.  He then moved to my calendar.  First question "can I add cocktails into your calendar?"  I smiled.  Next question to me..."Oh, you're in chemo?"  Yes, Bradford, I'm in chemo AND DO NOT LOSE MY CALENDAR!!!  I need it, so don't mess things up.  He was kind and mentioned that his Mom was a retired oncology nurse and he realizes how hard it is.  I politely smiled, we continued my "lesson", I bought a few iPad accessories and then he suggested that I get a phone case because of the shakes that I have...ugh...I added the phone case and headed out the door.


I started home at this point.  I've only been awake for about 6 hours and I cannot wait to get back into bed.  As I drove the pain starting getting worse.  My body was rejecting me.  The drugs were setting into my body.  The nausea was getting worse.  The bone and joint pain gets worse by the second.  I talked to Stephanie most of my way home and I was afraid I wasn't going to make it.  I thought about pulling over to take a break, but I was afraid that I'd get stuck, so I just kept driving.  I crawled into bed when I got home and stayed there until Monday morning.  Tossing and turning from the pain in my joints and bones.  Crying from the pain the majority of the weekend.  My Dad stopped by Sunday morning to check on me and I just cried.  He fixes everything, but he can't fix this.  I asked him not to tell my Mom.  It is just too hard on her.  The pain was so bad Sunday night that I actually considered calling her to help, but I just kept thinking that it would stop.  The pain killers are not working.  The sleeping pills are not working.  I'm dripping in sweat one minute and freezing the next.  My emotions are high.  I looked on Facebook from the iPad every so often to try to distract myself.  Somebody had a post that said "I can't tell if it's killing me or making me stronger."  I "liked" the post so it showed in my feed.  Maggie Mae commented "stronger"...I needed that.  The pain will go away, the meds will get out of my system...THE CANCER WILL GO AWAY...it's just going to be an interesting journey to get to that point.


XOXO,


S

If you or anyone you love is facing cancer PLEASE reach out to the American Cancer Society.  Nobody should face cancer alone.   http://www.cancer.org/  or 800.227.2345.   24 hours a day 365 days a year.  WE are here for you.

My Work WE is AWESOME! - July 12, 2012

"I may not be Wonder Woman, but I can do things that make you "WONDER"


I hardly slept last night because I couldn't get comfortable after surgery.  Tossing and turning...tossing and turning.  All while watching Law & Order.  My years of insomnia would not be the same without Law & Order.  Up early today and getting ready for work.  You only get so many FMLA days, so I don't want to use them unless I really need them.  I'm not feeling too badly, but I'm exhausted.  Many days I work from home, but today I have to be in my Chicago office for meetings.  I still have a good sized bandage from surgery, so it takes me forever to decide what to wear, plus I want to be comfy all day.  Traffic is terrible heading in to the city.  I thought about taking the train, but I didn't want to deal with the germs....I need to stay healthy.  I thought I was feeling ok until I was stuck in the car for the drive.  Finally, I'm at the office.  I was a nervous wreck walking in the door.  What would people say?  How would they act?  How would I act?  Do I have the energy to be here?  Can I form a sentence that makes sense?  Of course, I was over thinking the process.  The majority of people that are on our team work remotely, so we don't see each other that often.  Staci is the only one that I have seen since the debacle began.  Lot's of "how are you feeling?", "you look good", "hey, good to see you."  Of course, everyone was as kind as could be.  I didn't take a pain killer before I arrived because I had to drive, but I took one shortly after I got to the office.


We quickly got to work in meetings and on conference calls.  It all seemed normal.  After vacation last week and a few days off for surgeries, chemo, etc.  I feel out of the loop on all that is happening, but I'll try to get up to speed quickly.  My co-workers have picked up extra projects and helped me so much.  I feel badly for adding work to their loads.  We had our team meeting and then it was time for lunch.  I was feeling pretty good...nobody had really mentioned my cancer yet.  I may just get out of here without too much emotion.  Well...not so fast.  Ann stopped us before we started to grab our food.  She said we just have one more thing that we need to do...her voice cracked and her eyes filled a bit.  Deep breath...deep breath...no eye contact...no eye contact...too late...she hardly had a word out of her mouth and I started crying.  I almost made it to lunch today without any tears.   Ann said a few kind words and then reached down to the floor to pick up a bag.  She told me that a little bird (Staci) had told everyone that I was hoping to document this second time around and that I was considering buying a couple of items to do so.  She then said that people all over the state and from across the country and joined together to get me a "Journey Gift"...I'm crying through this whole speech...deep breaths...deep breaths...no eye contact...no eye contact.  Then Ann headed my way with the bag....I just peeked into the bag and saw that it was a iPad...this iPad that I am now blogging on.  I can't begin to tell you how overwhelming the generosity and kindness of others has been, but this "journey gift" shocked me to no end.  I couldn't even pull it out of the bag because I was shaking and crying.  I couldn't read the card there because I was too emotional to read it.  I could hardly say thank you to my team, but I tried.  I don't know how they pulled it off...people really just started finding out within the past 3 days.  And now they have given me a gift that I could never afford on my own...a gift that will allow me to find my "voice" is this experience, a gift that I can easily carry on days that my laptop is too heavy.  A gift that will continue to give long after my journey is over.  An electronic get well card was also sent around to all, printed off, and is amazing.  I think I was numb the rest of the day...I don't know how to thank a group of people that mean the world to me...they are all AWESOME!!!  ;)  


The day was long and emotional.  Traffic was not terrible going home so I met Jeff and Cindi for dinner at Truth.  Not too much because my stomach didn't appear to be wanting to agree with me.  Then home for bed...well, not so quick...time to get sick.  I think I overdid things today...tried too hard for normal.  I sat on the bed and cried while reading the card that everyone had signed...how did I get so lucky to have this many people who care in my simple little life?  Do I deserve this many wonderful people?  I played with the iPad for a few minutes...very few because I wasn't feeling well and because I'm not as smart as the iPad just yet, but I have slept with it in my bed every night since that night and Frank thinks it is his pillow.


The outpouring of love has been nothing short of AMAZING!!  I have great people in my life, even some that I don't know all that well, but WE are all fighting this damn disease together.  I'm PROUD to work for the American Cancer Society...my 3rd family.


XOXO, 


S


PS...thank you...Cyndi, Nancy, Danielle, Stephanie, LB, Judy, Frannie, Flo, Ian, Michelle, Steven, Kristina, Donna - Sweet Tea, Ted, Michelle, Mandie, Keri, Erin, Ann, Staci, Mary, Jenna, Maggie Mae, Hensley, Anna, Karli, Deb, Mary Jo, Joy, Kate, Tonda, Charlyn, Jackie, Chris, Sarah, Theresa, Debbie, Carrie, Lauren, Lynn, Dwan, Kevin, Anna, Leslie, Debbie, Michelle, Karen, Karen, Stephanie, Maggie, Sarah, JoAnn, Jamie, Meghan, Nikki, Healy, and Jay...I hope I didn't miss anyone!!  Much love to each of you.  I PROMISE you all that I will pay it forward!!!

My iPad..."It is going to be o.k.  You are going to be o.k."  The first thing I see whenever I look at it...just a little something to keep in the front of my mind.

Frank using the iPad as a pillow... I think he's jealous that he is not getting all of my attention.

If you or anyone you love is facing cancer PLEASE reach out to the American Cancer Society.  Nobody should face cancer alone.   http://www.cancer.org/  or 800.227.2345.   24 hours a day 365 days a year.  WE are here for you.

Time for Cocktails - well, surgery and "chemo" cocktails - July 11, 2012

"I do not think WE know our own strength until we have seen how strong Love makes us." - Curly Girl Design (Thanks, Kris Wruk)

Warning...this is a long entry.  You may want to grab a drink or go to the bathroom before you get started.  Sorry, I promise it is not even as close to as long as the day was....

Today was a long day before it even got out of bed. Anticipation for chemo started the day I heard I had cancer again. I found out last week what "cocktail" I would receive and had a full understanding of what would happen. It's like they whip up a recipe to kill your cancer, but the potion kills so much more. Times have changed so much since my first journey...I have changed so much...but the drugs that work are still the same. Protocol for my type of breast cancer is typically four rounds of chemo, my doctor and I have chosen to be aggressive...as long as my body can take it. Six rounds of chemo are on my calendar over the next several months. I will go every third Thursday and receive the two following drugs. First up on my list is Taxotere and then Cytoxan. In 2000, I had one additional drug called Adriamycin, but due to the impact that it has on your heart, I would not be eligible to take it again at this time. I'm happy to not get the "red devil", as it is called, but I'm nervous about Taxotere. Taxol, it's sister drug, kicked my butt last time around. The thing about chemo is that you take what the doctor tells you is going to work. It's like eating dinner at your parents' house as a kid...you eat what mom made for dinner...there's no menu here! Chemotherpy is a drug treatment that uses powerful chemicals to kill fast-growing cells in your body. Though chemotherapy is an effective way to treat many types of cancer, treatment also carries risks of side effects. These side effects are what cause the most fear in my heart and mind. 


If you read my earlier post, "Jumping Ahead 10 Days", you know that the morning was difficult. Lots of tears and anxiety filled my heart, head, and home. Somehow I managed to pull myself together, put on a little makeup, comfy clothes and drive to mom and dad's. I can honestly say that I don't remember what happened between leaving my house and getting to the hospital. I had to be there by 9 am to check in for surgery to insert my port. Do you know what a port is? A portacath (port) is a small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort than a normal "needle stick". (I completely pulled that description from the paperwork).  To be honest, I was 100% against a port. I chose to go the old-fashioned way in 2000/2001...straight to the veins with a needle. There is no logical reason for this, but things just aren't logical these days. Dr. Robinson insisted on the port, so here I am getting a port. Last month if I were to ask you the question "do you know what a port is?"...I would have hopefully been talking about wine.


Of course, we were early, I like to hurry up and wait! We go through the maze of the hospital until we find the little room in the basement for waiting. It only took a minute to get mom seated with my bag of goodies for everyone and they called me back. It wasn't like they walked me back. The man at the desk simply said take a right out the door and head all the way down to the double doors. It was one if those walks where you feel like you've been walking forever, but in reality it was close to the waiting room. Once in the preparation room I had my bandages changed from the biopsy the day before, was given an IV, met with the doctor who would insert my port so he could mark the area, met with nurse Mike to talk about the procedure, changed, etc. A lot was happening quickly. Into surgery I went. 


It is always strange when you get a scan, a mammogram, chemo, surgery, etc...the patient is completely bare and vulnerable, but the person performing the procedure is in full gear. Mike had on his radiation proof vest, mask, gloves, etc. you would think they are going to war with all the gear they are wearing. Yet, here I sit with nothing on of that nature. Just like when the MRI techs leave the room and talk to you over the speaker. I guess all the contamination is ok for me, but too dangerous for them. I get it, but it is still unnerving. The doctors came in to do the procedure and nurse Roberta was there to help. The doctors were both very handsome. Just my luck, handsome single docs and I have cancer. Roberta had on blue eye shadow that would rival any of my high school days or Pom competitions. It was impressive. She does Jazzercuse and knows my friend Matt. Small world when you ask a lot of questions. Apparently, I ask more questions than most. Mike answered every one, but he may have added to my IV to shut me up. The procedure takes a little under an hour. Two large slits, 20 stitches, a bandage that looks like I had major surgery, and they're ready to ship me off to my next stop. Mike made it very clear that I needed a "responsible driver" to take me home today...crap, I'm screwed...I didn't bring one with me. 


When I returned to the waiting room I'm happy to see that my sister is there keeping mom company. She was kind enough to take a couple of days off work to help out. I'm surprised she came back after how long things took yesterday, but I love her for doing it. I have 30 minutes to get to my next appointment and I was starving since I couldn't eat before surgery, so we detoured to the cafeteria and I grabbed a quick grilled cheese sandwich and a Diet Cherry Pepsi. I could only drink Dt. Pepsi though my last chemo, so the choice is probably psychological, but it all tasted great. We then headed to the next building for my 11:30 AM appointment with Dr. Robinson. I walked over. Chris took the shuttle because she was stuck carrying my bag that weighs too much. I think Mom was walking behind me, but I'm not 100% sure on that. I reached the waiting area, checked in, waited, and enjoyed my sandwich. Of course, I made eye contact with the lady near me, so I was stuck in a conversation that I had no interest in being a part of...does she not see the huge bandage on my chest or realize that I am starting chemo at 2 PM...small talk is low on my list of things to do. 


So far today, I have received about 50 texts of support, emails of encouragement, and calls with love. Word was getting around, post on Facebook, email chains, etc. Social media really kicked in today and I'm not sure that I am ready for it, but I have bigger fish to fry. An email and some text came from the most unlikely sources...while I was shocked to receive them, I appreciate the kind thoughts and words...time does heal most wounds. 


Mom joined me in the wait and then I was called in. I had planned on going in alone, but Mom wanted to meet the doctor. I forgot that she had not met her because Cindi came with me for those appointments. We were placed in the room and we waited. Mom gets frustrated while we wait, but I am almost always ok with waiting. If you have a doctor that will give you all the time you need and answer your questions, she/he is well worth waiting for. I look at it this way, if she doesn't rush me, she is not rushing others. They are just as important as I am, they may be going through worse, they may just have more questions. I am not patient with most things, but I will wait for a doctor that I respect. When Dr. Robinson came to the room she answered every question and then sent me on my way upstairs for the infusion center. Mom really liked her, so that is a bonus...what's not to like!?!?


We reached the top of the stairs and I was relieved to see that Gina and Stephanie had arrived...I like to travel with an entourage. :) Steph had several pink bags full of goodies. I don't know where I would be with out my family and amazing friends. They are my ROCKS, my heart, my soul! 


When I walked out of radiation in 2001, Steph and Gina were there and now they are here to walk me back into treatment. We went full circle, but it appears we went backwards in some ways...seems like something the three of us would do. We have been through so much together since college...the good, the bad, and the ugly...this is actually just one of the bad thing, we've gone through worse...but we always laugh along the route...often we laugh at each other...more often we laugh at/with Gina!!  :)  What would I do without my girls????  I don't plan on ever finding out...we are going to all grow old together...granted they'll grow older first because I'm the youngest of the group!


The five of us gathered and waited for my name to be called. I can only take one person back with me and now I have four that I want to take. I think we all knew who would be the first to go, but we didn't speak about it. We sat and joked around, teased Gina (because we LOVE her), and waited with anticipation. "Susan?"...they called my name...deep breaths...deep breaths...deep breaths...time to go. We all walked up to the counter, even though we were not all going in. I tried to keep the situation ok by joking with everyone..."Ward, party of 5". The receptionist laughed, we all laughed...all I wanted to do was melt, cry, kick, scream...I don't want to go back there. I don't want to start chemo. Are we sure this isn't a huge mistake?  My eyes were welling up, but I needed to be strong.


Time to go back, so I looked at my entourage and said "Steph, let's go." I know that this may have hurt my Mom's feelings, but I actually did this for her. I knew it was going to be hard for me, I knew I would cry, and I didn't want my Mom to see how scared I was. Hugs and kisses good-bye. I'll be here for awhile, so they will all get a turn to hang out with the patient. My nurse's name is Katie. She's young, bubbly, and sweet. Seems like a good match and we are going to get along just fine. She takes us straight back to a chair with a smaller chair and a stool next to it. There's a small tv on the wall, a table next to my chair, and a man with his wife getting chemo in the chair next to me. Katie started getting things situated. Stephanie pulled out the first pink bag with a small vase holding a dozen pink roses from the boys. She placed it on the table next to me...she likes to bling things up! They were beautiful and the cards they wrote were adorable. Katie walked away to get something and it all hit me...I'm starting chemo, again. How the hell did we get here, again. I looked at Steph and started crying, WE started crying. She hugged me tightly so I could let it all out. And she just kept saying "it's going to be okay. you're going to be okay. WE will all get through this together."  I just said "I don't want to do this."  Simple statement and a fact.  I know that I will be ok in the long run, but I'm not ready for this part of the journey. Katie pulled the curtain that was between us and the man receiving chemo.  Clearly she saw that I needed my own space to process all that was happening.


We wiped our tears and Katie started my first IV. It will take about 30 minutes to mix my "cocktails" and get chemo actually started, but there are other things that go into the IV to keep me from getting sick from chemo. The anticipation of feeling the first flow of the IV is killing me...


Next pink bag comes in to play...Stephanie's parents sent a fantastic, pink, leopard print, soft blanket. Perfect for when things get cold. Then the third pink bag...a Pink Cubs shirt that says "Play Ball" on the back...I think it may have killed Stephanie, a Sox fan, to purchase a Cubs shirt...but, it's time to "Play Ball" in this game called cancer...she loves me, she really loves me!!! ;) 


Time for my first "cocktail". As Katie started the bag, I said "Perfect!!! I was hoping you'd bring me a Grey Goose dirty martini with extra blue cheese olives." She laughed, we all laughed...I needed to laugh! Deep breaths, deep breaths, deep breaths...time to start the drip of Taxotere. 


Stephanie and I lost track of time and we were getting text from the lobby. Time for my next visitors. My "longest friend" Jennifer was in the lobby with the entourage. Jennifer had a doctor's appointment at Loyola and stopped by to visit. I call her my "longest friend" because we have been friends the longest...since we were 4. To call her my "oldest friend" makes us sound old. She and I have been through a lot together. While we don't see each other as much as we should, I know we would drop everything if the other needed something. Jennifer is 11 days younger than I am and had a heart attack in May...heart issues and cancer...two things we should not be dealing with at our age. We sat around and talked for awhile. Mostly about Taylore, her daughter and my Godchild...she's getting ready to go off to college and have some fun. While we sat there and talked I thought about how strange it must be to be sitting talking to someone who is hooked up to IVs that you know are going to make her sick before it makes her better. Chris and Gina also came in. Before you knew it, we were all there. It was getting late in the day and the infusion center had started to empty out, so my entourage started taking over. My second "cocktail" was soon started...a "French Martini"...Cindi's favorite...or as Katie called it, Cytoxan.


The strangest thing, I don't really remember my Mom coming back to sit with me. I'm sure that she did because I remember hearing all about the two cats that my Dad rescued and brought into their house that day...little Priscilla and her kitty Holly had joined the Ward household...lucky, soon to be spoiled cats. I think the cats helped Mom and Dad cope on this scary day...lots of conversation around the cats. Jennifer headed out to go home. Stephanie headed out to go to baseball games. The four of us were left behind and waited for the drugs to finish entering my system. I think it was around 5:30 when when we left. Exhausted, tired, emotionally drained, but done with the first round of "cocktails". 


I said my goodbyes and then got into the car with my "responsible driver", Mom. Traffic wasn't too bad, I was hungry, so we headed to Jimmy Johns for an un-wich and then stopped by Kohl's to see if they had the scarf I had been looking for....I needed to get home soon.  Dad was at my house when we returned...it was good to see my #1 guy hanging out with my two, four-legged boys.


Finally, home and to bed. My body is tired. My mind is tired. I'm emotionally drained.  My body hurts from surgery, so I don't know how I am going to get comfortable, but I'll try. The strange thing about chemo, for me, is that I felt fine when we left the building, but I know what is coming.  I cried myself to sleep tonight because life is getting overwhelming.  Sleep well my friends. 


One round of chemo down...5 to go...


 XOXO, 


 Sue

Me getting my first round of chemo.  Stephanie took a picture and made sure that I smiled.  BIG bandage from port surgery.  Comfy pants from Suzanne & Bill. I few more hours to go and I will be done. 

Roses from Maxwell and Jackson to sit on the table next to me during chemo.

If you or anyone you love is facing cancer PLEASE reach out to the American Cancer Society.  Nobody should face cancer alone.   http://www.cancer.org/  or 800.227.2345.   24 hours a day 365 days a year.  WE are here for you.