The Beginning of the Process

Thank You

First off – a big thank you to everyone for the outpouring of love and support I have received over the last week.  Writing that post to put out into the world was hard…but it felt good to get everything I was feeling OUT and also not feel like I have to retell my situation to each individual.  Repeating myself is emotional and hard…so this outlet makes it easier on me.  And most importantly I LOVE that you all got my message.  I heard from so many, “At first I felt so sorry for you – but by the end, I thought what a badass this girl is!”  Hearing that seriously made my day.  I don’t want anyone to feel sorry for me.  Sure, this situation totally blows – it’s unfair – it’s upsetting – but it’s certainly not the end of me.  It might rock my world for a hot minute – but it won’t be forever.  I will find my new norm and keep on moving.  Because that’s life, right?  Roll with the punches.

What Next?

So what happens next and where do we go from here?  I will keep you all updated as I go on this very strange, unreal journey.  Doors are already opening and I am meeting amazing people.  A friend of mine put me in contact with a college friend of hers who lost a limb in a bad car accident a while back.  Even though she lost an arm and I will be losing a lower leg/foot, she thought our personalities were very similar and she would be a good person to talk to.  Boy, was she right.  This woman was amazing.  She restored my faith that although this will probably be the hardest thing to go through – I will find myself again in the end.  I have started to fear that I won’t feel like the same person again – which in a sense I guess I won’t be.  In a way – I am already not.  I don’t take things for granted – I have stopped sweating the small stuff that doesn’t matter.   These are all positive changes from my current situation.  To focus on WHAT and WHO really matters.  This woman was happy – fully functioning as she was before – and a very similar “bubbly” personality to my “normal” self.  After speaking with her, my heart-felt full and grateful for people like her who take the time to help some else they don’t even know.  I felt a sense of relief after our hour-long call.  And I realized again – when this whole ordeal is over – and I “get myself back” over time – this will be my calling too.  To be there to help other people emotionally deal with a loss like this.

Monday I am meeting with another woman.  She is slightly older than me – but not by much.  She is also super active and has 2 small kids at home – and she is a local patient advocate.  She lost her lower leg to cancer 8 years ago and she has been cancer free ever since.  I am really looking forward to our meeting and being able to sit down face to face with someone who has had the exact surgery I will be having.

 

MD Anderson

As I stated in my last post, my doctor is amazing and is encouraging second opinions for my mental comfort with this decision.  So very soon, my mom and I will be heading to Houston to visit MD Anderson.  MD Anderson is rated the number one cancer research hospital in the country.  And since Sarcoma is SO rare – and the kind I have is even rarer (I have read about 44 cases reported so I guess I am 45) – they will be a great resource.  I am not sure of the types of testing they will run on me – I can only assume a possible PET scan, blood work and more.  They have lots of different trials and innovative treatments there that can be assigned, and then implemented at home.  While this type of cancer is not receptive to chemo and radiation, in my heart I know my foot is going to have to go to ensure my best chance at a cancer free life.  I am really not interested in a limb saving option that only gives me a 50/50 chance of a recurrence again – a higher chance of metastasizing and not full function mobility wise.  What is the point of saving something that can’t be saved?  But going to the best of the best when it comes to hospitals and research centers, will ensure this BIG decision is in fact the best decision (and if there is a new option we aren’t aware of yet).

 

When I Return…

When I return from Houston, I am scheduled to meet with an integrative medicine doctor locally.  They discuss pain management, emotion, reaction, how to move past such a traumatic, life changing event and more.  It’s kind of like a mind/body focus – which I think I will find extremely helpful.

 

After that – I have a few more appts before surgery will be scheduled (assuming we stay on this same path).  I will meet with the prosthetist to discuss what I will need to go about my everyday life (and workouts – because you KNOW I will be back at Pure Barre and Orange Theory as soon as I am allowed).  And on another note – I LOVE how many people have reached out about wanting to run that 5k with me at the end of the year.  I have a feeling we will put a team together to go ROCK and CELEBRATE that day.  I am a little anxious for this appointment because I feel like this will make it even more real for me that this is going to happen.

 

I will also meet with a specialist who goes over how to make small changes in your home to make it more accommodating (where to keep crutches, grab bars, etc).  It is SUPER weird to be preparing for what some people would consider to “become disabled”.  Instead – I am choosing to look at it like I am making changes to be BACK to ENABLED.  I have already made it clear there will NOT be a wheel chair brought into this house…I am sticking to that.  I don’t want it – I don’t need it.  In my normal every day life – I literally don’t sit down (except for in the car or at my desk to work – and even working I can use my phone and I literally just keep moving).  I know I will be back to that.

 

There are 2 other specialists I will meet with beforehand that help with surgery – pain management – etc. and then we will pick a day.  I know picking a day is going to be extremely difficult for me.  How can you pick a day to say goodbye to your foot?  It’s unimaginable.

It’s the Small Things

I find myself doing small everyday things that most take for granted – I am becoming grateful.  Like being able to carry my 13-year-old most special dog down the stairs each time to take her out so it puts less strain on her joints.  Or carry my sleeping child up the stairs to their bed.  I found myself feeling grateful for being able to jump in the car and drive to the store alone when I need something for the house.  For chasing after my kids in the snow we just had and asking my mom to take our picture of me standing with both legs in tact with my kids.  I even found myself closing my eyes and trying to memorize how it feels to walk on 2 feet as I stroll through Target and the grocery store.  Tears streaming down my face – strangers looking at me and looking away – but sometimes I can’t hold it in.  Can you imagine walking around and with each step knowing your life is about to change this drastically (and all out of your control)?  I am a control freak – so I am trying to find small ways I am in control of this situation.  So I continue to take each day – one at a time – each appointment – one at a time – trying very hard to breath through this process and not let it completely overwhelm and consume me.  It is freaking hard.

My Kids

I have started to talk to the kids about how my foot is sick – how I will only have 1 foot for a while – and then the doctor will give me a super hero foot to help me walk.  I have also talked to them about how I will be ok and how I will need them to help be a little more independent (like putting their dishes in the sink, cleaning up their toys, really things they should be doing anyway but I am constantly doing for them).  My son’s response?  He is 3…he said, “Mommy, if the doctor gives you a super hero foot, does that mean you will be faster than me?” HA!  I freaking love this kid.  A laugh just when I needed it.  My daughter on the other hand?  I hope she can read this when she is older…she is only 4 and over the last several conversations I have had with her on this topic, she has brought me to tears with her sensitivity and HUGE heart.  She came to me on her own and asked if we could move her plates and cups to a lower cabinet so she can get her own drinks when she is thirsty so she won’t have to ask me.  She also asked me last night if she could get a 2-seater bike for her birthday.  I asked why – she explained when I have 1 foot for a while she can take me for rides to get fresh air.  I explained when  I have my surgery – I will have to stay in the hospital for a few days and nights before coming home.  I asked if she would visit me and bring extra hugs and snuggles for me.  She smiled and said of course…and then she said, “Mommy, I will bring you beautiful flowers too”.  You guys – I can’t make this stuff up.  She comes up with this on her own.  If there is anything that comes out of bad situations like this – is it restores your faith in humanity.  And I can confidently say I am raising one OUTSTANDING, loving and compassionate daughter.  I couldn’t be prouder to say I am her mom.

I will be Cancer FREE

So for now – we stay positive.  Because that’s all we can do.  My family is incredible.  They are offering to help in more ways than one and are already talking about when they can come down to visit and help.  My support system of friends (near and far) couldn’t be stronger.  My heart is FULL and I know this time next year I will be in a better place – I will be getting myself back – and most importantly I will be here and I will be cancer FREE.

 

I will update you all after I return from MD Anderson with my second opinion and move to the next steps.  For now – thank you for the love and support.  You all make this whole ordeal bearable.  I love and appreciate each of you for helping me through this process.

 

Make a Difference

4 thoughts on “The Beginning of the Process”

  1. So glad to hear you are getting the info and care you need. You are so strong, but know we are here for you if you need anything. Everyone needs a super hero and you are ours!

  2. Love you Jenn! Thanks for sharing your update. You are right, Hannah and Ari are the sweetest. Big hugs to you and your wonderful kiddos. xoxo – Lana

  3. Jenn you are such an inspiration!! I’m praying for you as you travel for your second opinion. You uplift people everyday with your positivity and beautiful spirit. There is no doubt that you cannot handle this but I am so sorry that you are dealing with this. Thank you for sharing your story. Love you friend

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