If you’ve been following my blog since I launched back in March you probably noticed that I have gone radio silent for the past month or so. But I’m still here! I am sorry for my absence and I want to explain. I initially intended to write this post as a sort of apology, to my audience, for beginning a story, getting you hooked (hopefully!), and then leaving you hanging right when things were about to get juicy! That was never my intention, I promise! But if you’ve learned anything from reading my story thus far, you have probably picked up on the fact that my life doesn’t usually go as I planned.
You see, the entire purpose behind this blog is to tell my story and raise awareness for MS and HSCT. I planned to tell my story in hopes of educating others and sharing my experiences, and my hope for a healthier future. However, I recently came to the realization that it’s very hard to write your story from start to finish when you are still very much in the middle of the most exciting chapters! I’ve been so busy being out in the world, living my life, gathering experiences to fill those chapters, and all the while my computer has been sitting on the shelf gathering dust. The other issue I was having when it came to writing was that even when I was sitting still, I had ZERO desire to mentally take myself back to two years ago and revisit those very rough MS days; which was necessary for me to do if I was going to continue to share my story in this neat, organized, chronological fashion that I had planned when I set out to do this.
Every time I tried to put together a post, or even just a few solid sentences, my mind would go off in its own world. A world where it was half blank with nothing to say, but the other half so full of ideas to express it wanted to explode. I was stuck, once again, in very unfamiliar territory. I realized I needed a new game plan. What the hell was I thinking trying to create something “neat and organized” that is centered around MS; the most unpredictable disease on the planet! I knew better than this; my experience with MS taught me better than this. I’m blaming the chemo brain for this lapse of judgement!
I needed to learn how to live the story while I was writing it; to marry the two versions of myself into this new person I was becoming. In hindsight, it seems such an obvious realization but it smacked me so hard in the face that I didn’t know what to do to begin figuring out my next steps. So I went to the one place in the world always guaranteed to relax my mind; my family’s lake house in Indiana, a.k.a. My Happy Place. I intended to run away just for the weekend but once I got there, the lake air consumed me into it’s relaxing bubble, and the next thing I knew it was almost three weeks later before I (reluctantly) returned to Chicago.
I do my best writing when I’m relaxed and in my own bubble. But even there in my Happy Place I was struggling to find the right words to continue my story. I realized as I was writing, trying to explain how I felt a year ago, that my experiences had changed me, not only physically, but mentally and emotionally too. I wasn’t seeing things the same way I had when I began this journey. I went into HSCT with a precise plan; get my stem cells, build my new immune system, allow ample recovery time, and return to life as I knew it before my diagnosis. That was best case scenario. But I also knew there was a strong possibility the plan would change. Or have to be adapted in some way. So I never allowed myself to look TOO far into the future, just in case it all came crumbling down around me.
Before HSCT, when I closed my eyes and pictured my future, it was all I could do to imagine myself walking, with my husband and future children, on a hot summer day, without pain, with my MS so many years in remission that I’ve almost forgotten it was ever there! That was my picture of the perfect future. It was a single snapshot in my head, a moment in time that I held out hope for.
One year ago, I believed that was impossible. Six months ago, although I then did believe it was POSSIBLE, it seemed like such a lofty dream that I considered it a one in a million chance. Plus, given my experiences with MS thus far, I never dared to let myself imagine my life any further than that snapshot moment. To me, getting to that moment and making it a reality was about as likely as winning the lottery. Sure, I would fantasize about all the things I’d do with the money if I won, but I never called Belmont Harbor to reserve a boat slip for the yacht I intended to buy with the winnings. It was a dream; the details were not important.
It was a similar thought process when I actually allowed myself to picture my future. I couldn’t imagine the house my husband and I would live in or the job I’d be working at. I couldn’t picture my future kids’ graduations or their weddings; let alone the birth of my first grandchild. No matter how much hope I possessed, with the progression of my MS, it was highly unlikely (the closest thing to impossible actually) that I’d be dancing at any of my kids weddings. It was a bitter pill to swallow at first but with every day I was growing more accepting of my illness. Don’t get me wrong, that in NO WAY meant I that was surrendering to it. I was instead learning to accept my new normal; at least until I could find a way to change it.
Today, I know that this dream for my future WILL become my reality. I am confident of it. I am so confident, in fact, that I have begun to imagine what my reality will look like beyond that snapshot in time!
In true MS form, with all its unpredictability, just as I was starting to make some sense of this MS crap, I came across a new treatment that doctors said could be “life changing.” Just as I was becoming fully aware of the fine line between controlling my MS and my MS controlling me, I found a doctor who said he had a way to “halt the progression” of my disease! Imagine how shocked I was to hear this when I had spent the past year being told by every other doctor I saw, that all they could do was TRY to SLOW it down; but that the progression was inevitable. While I was still fighting everyday to remain hopeful; I was realistic about my future and the limitations I would develop because of my MS. It wasn’t a matter of “if”, is was simply a question of “when” I would get worse. And I was handling it the best I could.
That all changed the day I learned about Dr. Richard Burt; the man, the myth, the legend; the man who saved my life. He offered me a treatment that he claimed would do something that NONE of the other drugs could do; it would fight BACK against my MS. It would STOP the disease progression, instead of just slowing it down. Heck, if I was REALLY lucky, some things might even get better!
On May 3, 2017, when he looked at me in his office during my evaluation and said “yes, I think I can help you. I’m doing to offer you this treatment,” my life was turned upside down for the second time in two years. Finally, a doctor with a “can’t stop, won’t stop” mentality who wanted to fight my MS as aggressively as I did! He was telling me not to settle for the life MS had recently promised me. He was giving me the hope I had been desperately searching for. He warned me of the potential risks.Yes, he made it very clear that the side effects of this treatment could be fatal. I looked him straight in the eye and said, “Yep. I know that and I’m ready. Let’s do it.” He assured me that he would be there with me every step of the way. Though I was scared out of my mind, happy tears streamed down my face as I began to imagine a life free of disease progression.
In a way, from that day forward it all became a blur. All of a sudden my life revolved around HSCT. Getting insurance approval, stopping my medicines, taking time off work, doctors appointments, MRIs, lab work, fertility appointments, etc. Life as I knew it (which I was STILL trying to figure out, mind you) went out the window. As the days went by things started happening and falling into place in a way I never imagined. Sometimes I felt like I was barely keeping my head above water, but a bigger part of me was worried that if I slowed down, for even a second, something would pop up and block my way. And right now, from where I was sitting, HSCT was the only way.
Fast forward nine months later and you know what happened?!?!?! (SPOILER ALERT!) I did it. I fucking did it! Excuse my language, but if you continue on with me throughout the rest of my journey you’ll see why this is a cursable occasion!
On February 19, 2018, I received HSCT at Northwestern Memorial Hospital in Chicago from Dr. Richard Burt and his amazing team. Mission accomplished. Job well done. Holy shit I did it. Goal achieved. I did it!!! Some days I look back and can’t believe I’m still standing and in one piece after everything my body has been through. It is true what they say; what doesn’t kill you makes you stronger.
But now comes the real fun…the what’s next? The now what?!?! Now comes that future that I never allowed myself to imagine the details of. It’s HERE! And I don’t have a clue what I want to do with it! Or better yet, I have a million different things I want to do with it and I’m not 100% sure how to do them! Or in what order. That precise plan I thought I had has once again been chucked out the window. Going through this treatment has given my life a new value, a new meaning. I have a new gratitude for every day and a desire to make the most and do the most that I can while I’m feeling well. I promised myself and Dr. Burt that I wouldn’t waste this second chance and it’s a promise I intend to keep. But, how can I do it all of it without aggravating my now dormant MS? THAT, my friends, is the million dollar question!
It’s a harder question to answer than I thought it would be. It’s taking me longer than I hoped to figure it out. “What do I want to be when I grow up?” seems to be the question of the day, the summer, this entire year really. I feel like it’s an ironic question given the fact that although I’m thirty years old, (ok, ok, technically 31) I’m just barely six months old according to my immune system! It sure brings a new meaning to the idea of my “inner child.”
I’m trying to make sense of this “new new normal,” as I sometimes call it. (My “new normal” was following my initial diagnosis.) A friend of mine calls it “Julie 2.0”. But since I now plan to live until the ripe old age of 90 thanks to my new stem cells and be dancing at my grandchildren’s weddings, I have officially termed it my “One Third Life Crisis”. Call it whatever you find most appropriate, or entertaining, but it’s the reason for my radio silence as of late. Still, so not cool of me, I know! It won’t happen again, I promise!
While I am still VERY much in the midst of my One Third Life Crisis I have now decided that instead of thinking this needs to be done in any certain way, I’m going to take life by the handlebars and make it whatever the heck I, me, myself, Julie 2.0, want it to be! Life isn’t neat and organized. Hell, sometimes it’s not even well thought out! It is what you make of it, and I intend to make it incredibly awesome! And so should you. Don’t wait for things to be perfect to take the next step. Live your life, even if it’s messy. Mine sure is, but so far it’s made for a pretty interesting story.
So what’s next? I’m not quite sure, that’s the fun of it! I will continue to fill in the details of my story from diagnosis, but with less rigidity and rules; and even more real. You’ll learn the story of my HSCT, from evaluation day to my stem cell birthday. I told myself when I was diagnosed that I wasn’t going to live in fear of my future with MS. I don’t anymore. Now, I just need to keep reminding myself that I also can not live in fear of my remission ending. Instead, I will make the most of the days that I have and be grateful for my second chance. I’m going to get out there and live life and I hope you’ll continue to join me.