My Appointment at IU and Other Stuff

So my appointment with the Dr. at IU has been set for June 5.  Next Thursday can't get here fast enough.  I'm nervous as can be, and waiting just makes it worse.  What will he say?  What will I have to do next?  Will I have to have another surgery for a biopsy?  Will I have to do radiation?  Will I have to do more chemo?  Will he tell me everything is fine and to just go home?  Good grief waiting is maddening.  

I found out this week that one of my good friends from high school has been diagnosed with breast cancer.  My heart sank when I heard the news.  You know, when you are growing up you NEVER think about getting cancer or any other serious illness.  You just live life, have fun, and hang out with your friends.  You graduate high school and go to college.  You just do what you do without really thinking about life.  Sure, you think about the future, but the future doesn't include cancer or illness.  Ever.  You dream about getting a job that you love, getting married, having kids...that kind of stuff.  Dreams of the future aren't about being in your mid-thirties and getting diagnosed with cancer, going through chemo and losing your hair.  They aren't about having to have your breast removed.  They aren't about going thru treatment and still not knowing if you are in remission or not.  They aren't about mouth sores, night sweats, and insomnia.  They aren't about struggling with self-esteem because of the weight gain, hair loss, lack of breast issues that come from cancer.  Now that I fully understand what someone has to go through when they have cancer, I just wanted to scream when I found out about my old friend.  Knowing what she is getting ready to endure makes me so angry.  She doesn't deserve it and neither do her husband and children.  STUPID CANCER.  I wish cancer would get cancer. 

I've been thinking a lot lately about my friends and all the support I have had during this process.  It's nothing short of incredible.  When I think about all the people who offered to take me to chemo, who did take me to chemo, who brought meals, gave me gifts, watched my kids, and the fundraisers that have been done, I'm humbled.  No one had to do anything for me but so many have just because they wanted too.  I hope that I don't need anymore help, but if I do I know I will have more than I need.  And that makes me smile!! 

I'm going to post pictures from chemo now.  I have posted some in earlier blogs, but I want to post them again, all together.  Why?  Because I can.

 

 

 

Might as well make it fun, right?

I hate losing

Just clownin'

My first chemo...had no clue what was going on!!

Don't know which chemo this was, but it was early on.

  

I mean seriously.  I should have shaved my head that day.  Ugh.

Jeremy likes the ball cap.  I don't.

First chemo...wiped me out!!  Like my blanket?  I love it!  It was made by prisoners.

First chemo BEFORE it wiped me out!!  OMG I wish I had my hair back!!

I Really Don't Have Time For This

 

PET scan machine. 

 

I have been putting off writing this blog post for four days now.  I have decided that not telling everyone isn't going to make it all better so I might as well put it out there.  And, by telling everyone I will avoid anymore awkward conversations.  It will stop the battle I play in my mind when people say "So happy for you!" and "So glad to hear you are finished with chemo!"  and "You look great!" and "I bet you are so glad to have this all behind you!"  I battle between just saying "Thanks" or making everything weird by telling the other person that it isn't, in fact, behind me. 

 

I had my PET scan on Thursday.  The results were not at all what we were hoping for, or what most were expecting.  If you remember, back in February I had a CT scan, and the radiologist report was that I was in complete remission.  While that is exciting and great news, I never relied on that as the be all end all.  Even though Dr. Stephens told us several times that he was 100% confident that all the cancer was gone and that the PET scan was just routine at this point, I still didn't let myself believe it was true.  I wasn't going to believe everything was OK until I saw a clear PET scan.  That's why I struggled so much with planning my No More Cancer party.  A huge part of me wanted to wait until after the PET scan, but pretty much everyone was telling me to go ahead and have it because if the doctor was so confident why wait?  So, we had the party.  And it was wonderful.  And I was happy.  It was a wonderful day.  But, about two weeks ago I felt a swollen lymph node in my neck.  In the exact same spot as before.  And, just like before, I felt great and had no signs of an infection.  It was at that moment that I knew everything wasn't OK.

 

Thursday morning was the scan and we met with Dr. Stephens for the results Thursday afternoon.  As soon as he told us to pull our chairs up to the computer screen I knew we weren't getting good news.  He showed us the first scan from November side by side to the scan from Thursday.  On the bright side, 99% of the cancer is gone.  But, that leaves 1% that is still showing up.  Dr. Stephens can't be certain what's going on.  He conferred with three other doctors in his office and they all agreed that their is uncertainty as to what is going on and how to proceed.  So, he is referring me to a Lymphoma specialist at IU Medical Center.  Jeremy asked him if this result is normal and he immediately said, "No." 

 

He apologized several times, saying that he really did expect the scan to be all clear.  I could tell he really did feel bad for us, and for telling us that he was sure it would be clear.  I hold no bad feelings towards him at all.  His words didn't change the outcome of the scan.  He went on to say that if what we see is in fact still Hodgkins then we still have a plan, and that plan is radiation.  Dr. Stephens told me the first day I met him that he didn't want to do radiation unless it was absolutely necessary because of all the possible terrible side effects.  But, when it comes to cancer you have to weigh the positives and negatives of treatment.  For me, knowing that radiation will kill it off for sure makes it worth the long term risk.  Really isn't a choice.  Doesn't make it any less scary, but you still have to do it.   

 

So that's that.  Now I wait to get my appointment at IU and we will go from there.  Definitely not where I wanted to be in this process but it is what it is.  Hopefully I get this appointment soon so we can move forward with whatever I have to do next.  In the meantime I will just keep living life.  That's about all a person can do, right?

 

She looks like how I feel about the whole situation...FRUSTRATED

 

 

 

The Trouble With Hair

 

Hahaha!!  Is that true??

 

 

"It's just hair."  "It will grow back."  "You will have so much fun experimenting with different styles."  "It's temporary."  "People don't care if you have hair or not."  "You are just as beautiful without hair as you are with hair."  

 

These are all things I have been told over the last however many months since I had to shave my head.  I know that everyone is just trying to be supportive and keep me positive.  And I appreciate that, I really do.  But lets be honest:  no one who has told me or that will tell me "It's just hair" will actually shave their head.  And why is that?  BECAUSE IT IS HAIR THATS WHY!!!  And we all know that it's a way bigger deal than just shaving it and letting it grow back.  It will grow back that's a fact.  Can't argue that (and trust me, if there is an argument ANYWHERE to be found I will be the first to bring it up.  I really should have been a lawyer). 

 

But listen to me for just a minute.  Let me tell you what it is really like to be a female with no hair.  IT IS WEIRD.  So weird that at times you look in the mirror and don't see you anymore.  You see a face with no hair, and that face doesn't look the same to you as it used too.  And the longer you have no hair, the harder it is too see the real you.  You start to feel like maybe your hair is what made you the person you were and what attracted people to you.  You start to feel like everyone in your inner circle is just being nice and that they don't really want to be seen with you, they just don't want to hurt your feelings.  You start to think that even your spouse is repulsed by you, because after all, he didn't marry a woman with no hair.  He married a woman who had always had long blonde hair.  So how could he (or anyone else) still find her attractive?  What man wants to be with a woman that now, at least in her mind, looks like a man too?  Even when your spouse assures you that your lack of hair doesn't matter to him at all, you still doubt.  You start to think that if your friends have not contacted you as much as they have in the past, it has to be because you look like a total freak (even though you know they are just busy and that they would still do anything for you).  IT IS REALLY HARD. 

 

 

I have tried to stay as positive as possible throughout this whole crappy ordeal aka cancer.  And I am trying to stay positive about the hair regrowth too.  And I'm certain that to those reading this who have never experienced any of this themselves are appalled that I would even complain about something as trivial as hair after having just beat cancer.  And maybe it does seem trivial.  But until you experience it (and I hope you never do) you just can't understand.  Yes, physically I have overcome a life-threatening disease.  But the mental impact of that process is something I never expected.  I'm a positive person so I figured the mental impact would be minimal.  But it isn't.  IT IS REALLY HARD. 

 

 

   I have been stuck on this for the last few weeks and can't stop obsessing about it.  I'm hoping this passes pretty fast and I can move on.  Will I be OK?  Yes.  Will I struggle every morning getting ready for work, trying to convince myself that I don't look as ridiculous as I think I do?  Yes.  Will I soon decide that maybe my friends really do still want to be around me and they aren't just trying to be nice?  I sure hope so.  Will I start to accept that my husband is telling me the truth and he really doesn't care about my hair?  I'm sure I will. 

 

I'm going to end this post with progress pictures.  The hair is actually growing a whole lot faster than I expected!  It has been almost six full weeks since the last time we shaved it.  Sure doesn't seem like it was that long ago!

 

 

 

 

My Workouts, My Party, and Mother's Day

 

The last week has been great!!!  I started my workouts again on Monday.  Man it feels good to get back in the "gym" (my gym is our Steelers room) again.  I took it pretty easy compared to what I was doing b.c. (remember, this means before cancer).  I did tabata's and core.  Monday I could only get through two of the three sets before I had to throw up the white flag.  I felt like I did the first day I did the fit test for Insanity.  Only difference was I didn't run into the bathroom because I really thought I might puke.  It was close though.  Tuesday was core and yikes!!  I forgot how hard that workout was!  I guess those first two days were sort of a warm up because the rest of the week I made it through all my tabata sets!!!  I was so excited about that!  It was sort of depressing though because b.c. I did those tabata's for a light workout, and now I struggle to finish.  But, I made progress last week and that can only be a sign of things to come.  After all, and I have to keep reminding myself, I was only one week post chemo #12.  Everyone else in my life keeps reminding me of that and telling me to take it easy and not be so hard on myself.  Evidently my mind works different because I don't focus on that.  All I focus on is the future and where I want to be and I know I have a long way to go.  I don't think about just finishing chemo or what my body has been through.  I probably should think about that stuff but I don't.  I look at pictures of myself from six months ago and compare them to what I look like today and I just want to cry (not gonna lie, I do cry over this sometimes).  I wish I still looked like that.  I know I need to stop the madness.  But it isn't that easy.  It's a lot easier for someone who hasn't been through this to say, "Oh, you will get back to looking like that soon."  Or, "Just be thankful your alive and are able to lose the weight again."  These are things I have been told over the last week.  And I get it.  I'm lucky to be here.  The weight will come off.  But it doesn't make the things that cancer did take from me any easier to deal with.  Hopefully, as the weeks go on, and I make progress toward my goals, it will get easier.  That's what I hope.

On a much brighter note, yesterday was my No More Cancer Party!!!!  I could not have asked for a better day.  It was absolutely perfect.  The rain stayed away, the sun was out.  And so many people showed up!!!!  Honestly, I had no clue how many to expect.  Even so, I was left speechless at the turnout.  At one point, I just stood there in awe of everything that was happening.  It made me so happy to see everyone laughing, playing games, the kids having a great time, and enjoying all the food.  And when it sunk in that everyone was there to celebrate the fact that I was still alive was the most humbling thing ever.  That so many people care what happens to me leaves me a little stunned.  Every single person there could have been doing a number of other things, but they all chose to give me a few hours of their life.  And that means more to me than I can ever express. 

 

 

 

 

Let me give a special shout out to a few folks who did so much to make my party happen.  First, Mandy Bratton.  This girl pulled this whole thing together.  She organized it all, and purposely kept me out of the loop so I wouldn't have to do anything.  She put in so much time preparing for this.  And yesterday, she worked tirelessly to make sure everything went off without any problems.  I have told her thank you so many times I don't feel like those words mean anything anymore.  I never asked her to do any of this.  She just did it.  I just hope that one day I can figure out a way to repay her.  Mandy is such an incredible friend and I am so blessed to have her in my life.  Glenn Boyster grilled all the food yesterday.  Poor guy stood at that grill for hours and refused to let anyone else take over.  Michele Boyster  helped as well.  A very special thank you to both of them for doing so much.  My dad was instrumental in making sure we had food and my brother helped with balloons.  And Alysia Renner and her mother for making my amazing cake (photo at the top)!!!  It was the coolest cake ever and everyone loved it!!!   Thank you all so much for everything. 

We all know today was Mother's Day.  And I had a great one!   I told Jeremy I didn't want a gift or to do anything other than be with him and my kids.  I told him that the gifts I received from my kids that they made themselves were perfect and that anything he could buy at a store would never be as special.  So, we ended up going to Burdette Park and walking 2.5 miles on the nature trail (not his idea of a good time, but since he knows me and how much I would enjoy it, he suffered through it).  Then we went to dinner.  Perfect.  Two absolutely perfect days in a row.  My life is so good!!!! 

 

 

No Hair, Don't Care

I'm not sure what happened between 11:00pm Friday night and 8:00am Saturday morning.  All I know for sure is that the place in my brain that constantly thought about/stressed over/worried what others would think f my not so awesome hair stopped working.  I woke up Saturday and was over it.  I just looked at all my hats and scarves and head covers and said "Nope.  Not doing that anymore."  And that was that.  Done.  Another chapter in my cancer story was over, seemingly as quickly as it had started.  Now that I think about it, the whole process of deciding to just go out in the world as I am pretty much mirrored the process of deciding to shave my head.  I stressed about shaving my head for weeks.  My entire thought process was consumed with what to do about the hair thing, especially in the last three or four days before I just said screw it and did it.  This decision was the same.  The last three or four days I have stressed over whether or not to wear something on my head every morning.  Then, while at work, I continued to stress.  Couldn't stop thinking about it.  Several times I went into the bathroom, took whatever was on my head off, and just stared at myself in the mirror.  And every time I would say to myself, "You look hideous.  What were you thinking."  And the head cover would go back on.  Then Saturday happened.  And I can tell you this:  after both decisions I felt so relieved.  Like a huge weight had been lifted off my shoulders.  Like I can breathe again.  Yesterday we were at the ballpark all day.  I wasn't sure what everyone would think, but I honestly did not care.  And when you finally let go of what you can't control, your whole world changes.  Life is just better when you live it for yourself and not based on the opinion of others.  That said, I got lots of hugs yesterday.  LOTS OF HUGS.  No one seemed to mind that I looked like a boy!!  Yay for that!!  Several people even told me that they were happy to see me without anything on my head.  So, I am really happy that I can finally just be me.  Because really, I'm still me.  The same me that existed before cancer.  I just have less hair.  So if you liked me with hair, I feel that you will still like me without hair.  If you didn't like me with hair, you probably still don't like me without hair.  So, it's all good.  From now on everyone will get to experience this hair regrowth and these crazy hair days with me.  Whether you want to or not.  Not up to you!!!  Hahahahahaha :)

In other news, I went to my first Relay For Life Survivor Lunch Saturday morning in Mt. Vernon.  That was weird, but good.  I've also been asked to participate in the North Posey Relay For Life as a speaker.  I've got a speaking engagement this week as well.  And I was told twice more this weekend that I should write a book.  That makes about six trillion times now that I've been told that.  I'm starting to think that maybe I should.  I just don't find my life that interesting.  But if someone else does, and they are willing to pay me to talk/write about it I'm probably not going to say no!!!

Last thing for tonight:  I have decided that tomorrow morning officially starts my next 90 Day Challenge!!!!  I'm excited and scared at the same time.  Don't worry though.  I'm starting off slow with my workouts.  At the suggestion of my trainer Natalie, I'll start with Tabata's and slowly work my way back to where I was B.C. (before cancer).  She seems to think that my muscle memory will kick in pretty quick and that it won't take long for my body to adapt.  We shall see!!!  Of course you will all be kept up to date through what will probably be a ridiculous amount of Facebook posts and workout selfies.  Gosh I have missed those days!!!  Workout selfies are the best!!!!!!