Today, I will share some transparency about why the posts can be hard to write now that we are back home. This post isn’t going to be words wrapped up in a pretty little bow people like to hear. We all have a part of us we don’t want people to see, something that wouldn’t voluntarily go on our highlight reel of social media. Early on in this journey I said I wanted to do a better job of sharing that part of me, so here I am, as uncomfortable as it is. It’s real-life friends and many of you are going through hardships so I want to be real and transparent because the truth is deeper than the smiles we carry around.

Cancer doesn't only happen to the person diagnosed with it; it happens to everyone who loves them. The experience is different, but the emotions are the same. "All the feelings" apply to us as well.

There was so long in between the last few posts because I kept waiting for a change to happen. It began to feel maddening, week after week, waiting in anticipation to see if those platelets would change. If Ben’s liver numbers would calm down or if they are showing a sign of GVHD. Even though things are pretty uneventful right now, it still feels frustratingly unpredictable, and the emotional chapters continue on. 

Some of you probably think, you’re home, get on with your life. Some wonder why the posts stopped. The truth is when we got back home, I finally had time to think for a minute. To realize how much, I needed to process. How much my kids needed to still process. 

It turns out there is never closure with cancer. And that realization is a hard pill to swallow. Cancer interrupts your life and there is nothing that can make the transition seamless. I accept that. I just wonder outside of the cancer community how many people know how deeply life altering it really is. I hate that people so often just expect you to move on like it was a simple detour in your destination. 

Consider the cliches for a moment. If you had the chance to live like you were dying, would you? Do you live each day as if it could be your last? I know I don’t always, and we’ve lived through this life-threatening illness. I do know that I appreciate all the extraordinary moments of an ordinary life, that I’m humbled, that it’s ok to not be ok sometimes, that life is hard and messy, and there’s no going back. I know without a doubt that a single moment can change your life. Cancer changed ours and here I am trying to figure out what all those changes look like. Good thing I’m always up for a challenge. 

Cancer doesn’t disappear even when they tell you there is no evidence of disease. It’s too late for all of that, the damage has been done to your body and psyche.  Nothing will ever be the same. This is true of the pandemic too. It won’t simply return to normal because we wish it to be so. People will remember how they were treated or mis-treated and masks may always be a part of our culture. Life as we remember it before, is gone.  I recently read a poem called “Welcome to Holland” written by a mom raising a child with disabilities. Imagine you planned out a trip to Italy down to every last detail but when you get off the plane you are actually in Holland. So, despite your planning you have to make adjustments so as to not miss out on this wonderful new experience given to you. They say most of the problems people have with their lives are that things don’t go as they planned and I couldn’t agree more. My conclusion is that cancer dropped us off in Holland. The people we were before don’t exist, the things we planned need some adjustments. Some are harder to accept than others, but we must shift to finding the positive outlook on life. 

Does this chapter ever really close? Does the fear ever really go way? Will the “triggers” subside?  

I jump on our transplant support group on Facebook and it’s post after post of issues and death. Patients that were doing great for 3-5 years and then out of nowhere a complication happened resulting in death. I quickly close out; my heart just isn’t ready. I have a combination of emotions- It transports me right back to that hospital room and I find it hard to breathe. I know the trenches these people are in, and they desperately want to hear that it is going to be ok. Guilt for not finding a way to support them.  I pray hard for the fellow fighters but sometimes it just doesn’t feel like enough. 

So much of this was a mind game. Waiting for test results. Waiting for the next step. Waiting for the answers. Waiting for counts to get better. Waiting for a sign. Waiting. So much waiting. Going on with your life is hard when you are waiting and wondering. 

I’m learning about dealing with life after cancer. I am focusing on my own headspace. I want to feel normal. 

 I’ve learned there is no right way to recover, there is also no way to recover. We aren’t recovering who we were before cancer, we are uncovering who we are after it and because of it. 

For those of you navigating Holland, I see you. I understand the damage has been done, but it doesn't mean you can't rebuild for a brighter future. Make yourself a priority, because at the end of the day you are your longest commitment.

  Maybe this post is a reflection of the dreary January days we are living. I think we need to up our ice cream celebration and plan a transplantaversary next year to somewhere warm!