I’m still standing

Back in Boston. Time for more healing. This equates to more surgeries, but innately, it is more healing. EVERYTHING HAS BEEN GOING SOOOOOO WELL. I just cannot complain. My counts are awesome. I’m 100% donor and fully grafted. I am cured of HLH. I have gotten 2 sets of immunizations. My PET scan is essentially clear. I am being weaned off my immunosuppression drugs. Seriously. So much to be thankful for, because being back in the city at my (almost) year anniversary, there is a lot to reflect on.

This time last year, I could barely walk from the bed to the bathroom. I had not eaten in 4 weeks (eventually my total time not eating would be 6 weeks). I had tried to die a couple of times (see What the Hell happened to you? Part 1 and What the hell happened to you? Part 2 ). Physically, emotionally I don’t think I could have been too much more beat up. It’s so hard to believe that was just a year ago. But really, literally and figuratively, a year is long enough to grow a new human. I really feel like I am completely new.


This would be the day that they called Greg in to say “good-bye.”

When we returned home to Kentucky, my life was saturated with things that I could no longer do. I could no longer work, clean my house, stay up past 5 o’clock, play with my children. And these things were all so terribly palpable to me. Losing 3-4″ in height made my house seem even bigger than it already was. I had to use a wheelchair just to get around the house. And I was consistently reminded of and openly grieving a life I no longer had. PTSD- like triggers would send me into deep crying fits and bouts of depression that made me feel so inadequate. I knew that I wanted to be a survivor, but I just didn’t know how. And no one tells you the outrageous amount of grief you will have for the life that is no longer yours. I felt like the pictures in the house mocked me and the tasks I faced every day were just daunting (Mirror, Mirror). That the bittersweetness of life were a ton more bitter and very little sweet. I didn’t know that being home would actually be tougher than being away.

God has a funny way to work memories. In some instances, they seem like your biggest enemy. This is definitely what I felt returning to KY. I could not WAIT to leave Boston in the dust. To be surrounded by my family and friends. To let “normal” become part of my vocabulary again. Boston had nothing for me. It could not possibly hold any positive thoughts. The sooner I could forget, the better. I was so thankful (and really I still am) that I could not remember the first 4-6 weeks of being in Boston. If I could have skipped the whole thing I would have. I think that you get my drift. But KY didn’t hold the relief I so longed for. At the point of returning, it took on it’s own tortuous twists. The peace that I searched for wasn’t there. Would I ever find it? No one can tell you if you will. You have to find and make your own peace.

The last time I truly walked the streets of Boston was in October 2017. We came here for what we thought would be a re-assurance that I was getting better. That we were on the down hill side of a year of a roller coaster life. That in a few weeks of continued treatment, I would have this thing beat. Normal was just around the corner. Boy. Were we in for a surprise. Before our appointment, I walked 2 miles roundtrip from DFCI to Fenway Park so that Greg and I could tour the stadium. After the appointment, I walked another 2 miles to the Cheesecake Factory all the while explaining on the phone to my mom that I needed a BMT. There was no questions in Dr. Superwoman’s mind that I would die from HLH if we didn’t do something and soon.

And hence, now the next chapter begins.

Last week, while walking the halls of our local hospital making my way to my one year PET scan, a woman yelled at me down the hall as I was coming toward her, “OMG!! I DO NOT KNOW HOW YOU STAND TO WALK ON THAT THING…THAT SHOE. THAT WOULD DRIVE ME CRAZY.” You would think by now I would take this type of comment as an invitation to return the statement with something like, “OMG! HOW DO YOU WALK AROUND WITH THAT FACE?! I COULD NOT STAND IT IF I LOOKED LIKE THAT!” But inside me there still dwells a woman who has a level of compassion for those that are just plain ignorant to their ignorance. I politely explained that it would be much more difficult for me to walk if one leg was 3″ shorter than the other. I just continued walking not wanting to really have a teachable moment with this individual. She continues to gape, “WELL, IF YOU SAY SO. I COULDN’T DO IT.” No. No my dear you could not. (Even my children were aghast at this woman’s comments. I am so proud of them.)

March 1, 2019 I walked the streets of Boston again. It was hard, exhausting even, to cover the 2 miles we needed to walk that took us to our T-station, to the hospital and back to our apartment. Each step with a swinging crutch by my side and an apparently ugly shoe on my foot. So many memories of the time when I couldn’t walk, were being crushed with ever step of my uneven gait. My mind willing my body to make it without complaint. Without regret or remorse over what I could not do. Singing my favorite hymns to myself to add a distraction.

So far, I’ve made it. I’m still standing.

I had a clean and clear pre-operative visit and will be going to surgery Wednesday to repair the right shoulder joint in preparation for the left hip surgery in June. Keep us all in your prayers that we will be heading home as scheduled. Thank you for all of your support on this journey!

Us at the Tstation that morning. 

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