Day 176…

9.10.12

Here we are.  It’s Monday morning and today is the day that I officially meet with my doctor to review the test results of the PET scan. While I was told on Friday by my nurse that I was given the all clear, today represents the closing of a very important chapter of this process, and my life.  I was so anxious for this appointment that I barely slept.  I’ve certainly accepted the inconsistent sleep pattern that I’ve been living through, but never have I liked it.  But today is a day of no complaints.  Today is a day where I can put a major life hiccup behind me…

I head to the chemo floor where I always have to go first to have my blood drawn.  Welcoming me is Elaine, one of my favorite people that I’ve come to know at Sloan.  As we talk and catch up on the weekend, I tell her that I heard on Friday that I was told my scan came back clean.  She fought back tears, which of course made me emotional, but it also made me smile.  The people that work at Sloan are nothing but the warmest and kindest people that I’ve come across in my life.  I could not be more fortunate to have been treated here…I have my blood drawn and head upstairs to meet with my doctor and nurse…we run through our standard protocol questions and then get to the crux of the conversation – the PET scan and how we move on from here…

My doc tells me that “the Hodgkin’s is in remission. It was and still is. You were in remission after your PET in May”.  That throws me off a bit.  And I ask him how/why/what that means…

He tells me that “since my PET in May was clean, that [the early remission] is prognostically good. Of people who are not PET-negative early in treatment, the chance of their being cured by doing same thing (ABVD) is 60-70%. If you’re PET-negative early, it’s 90, 95% probability of being cured.”

On many levels this puts me even more at ease, but at the same time I do wonder/question why then I would have had to finish out the protocol and be put through all the awfulness of chemo.  I know the answers, so I don’t ask.  It is more rehtorical in my mind…

You finish it because you need to be sure that it is all gone.

You finish it because you want to give yourself the greatest chance of it not coming back.

You finish it because that is what the medical experts who’s hands you’ve placed your life in say to finish it.

You finish it because it is Sloan Kettering.

We all look at the actual PET so he can explain how it is different than the first one that I had which confirmed the diagnosis.  It really is great to be able to visibly see a difference on screen and not just hear it in words.  There is a lot of emotion in the room, but happy emotion.  Lots of smiling, lots of huge sighs of relief.  It’s just great to be talking about the future and how I will go about living my life and what maintenance will occur…

We review the differences and why the upcoming follow-up scans will be CTs and not PETs…we learn that the reason is that PET has a higher rate of false positives. The CT will show any growth of the lymph nodes. They use PET at the beginning to see where the cancer is and at the end of treatment to confirm a complete response. Once it’s all gone, the chance of it coming back is very low, so there is a higher chance from then on of getting false positive results on a PET. If anything grows more than a few millimeters on the CT, then they would do a PET.

One thing that they have also asked that I do is participate in a survivorship study which will occur at 4 sites across the country to study how the first year of remission is communicated to you via your conversations with your doctors and how you feel physically and mentally.  Since I have agreed to take part in the study, I will go back in October for an extra checkup and then start the standard process of going every three months for blood work and have CT scans at 6, 12 and 24 months. He also tells me that he will see me for five years, take blood as little as every 6 months (maybe every 3-4 months) after we pass the 2 year mark.

This is all obviously a lot of information to take in, and can be challenging considering that we are all so relieved and happy that my life prognosis is good.  I know that I will need to take the time to think through everything that needs to happen, and more importantly all the things that have happened.  I can’t really say if I have processed any of this since the end of February…

Being told that you have cancer is a life changing experience.  No matter what kind you are diagnosed with.  No matter what stage it is.  No matter how old you are.  No matter how confident the doctors are in their approach to cure you.  It’s cancer.  That alone is enough to make even the strongest, most level headed person do a 180.  It is enough to strike a fear in you that you have never experienced and never want to experience.

Life is full of so many things that are out of your control and you can only do your best to deal and manage the best that you can, no matter what hand you’re dealt…

There will be a proper time in the coming days and months when everything will finally sink in and I will begin to really reflect on what I’ve gone through.  When that time comes, I will have a chance to let it all out in whatever form ‘it’ is.  All I can do is promise myself and the friends and family that I love on a daily basis that I will still be me.  What ‘me’ is today is certainly different than what ‘me’ was in February, but I can tell you that I think I really like the present ‘me’.  I have a new perspective.  I think I’ve begun to make the steps to become who I really am, albeit it faster than may have been planned, but I think I know how to truly enjoy what life has to offer to me.  How I can be good to people.  How I can try to make a difference, no matter how small or large it may end up being.  There is so much validity to the term ‘pay it forward’ and I know that I will do my very best to do just that.

This is only the beginning.

Before I end the post for the day, I want to give a huge THANK YOU to each and every person that touched me in a positive manner while I dealt with this life hiccup.  Whether it was a phone call, an email, a text, a visit, a care package, a smile – they all meant more than I’ll ever be able to express.  You are all not only the foundation of my happiness, but the reason why I can sit back, close my eyes and smile.  I love you all.

END CHAPTER 1…

This is only the begining.  I plan to update daily and let everyone know how chapter 2, or Josh 2.0 as it may be called is going.

Until tomorrow…

2 thoughts on “Day 176…

  1. The new “me” is merely an infinitely wiser and mature beyond-your-years version of the old “me”. But the smile never changes. I think the designation of Josh 2.0 is appropriate; you have been updated and rebooted. You are the best son a father could ever ask for. I love you more each day.