As I laid there in bed, it felt as if his arm was burning into my skin. He felt so hot.
My heart started racing and I recalled the last time when Steven's skin burned mine while lying in bed. May 2015. A trip to the emergency room and some blood work later and we learned he had relapsed. As I felt my stomach start to turn, I was reminded that Steven had told me that he had gotten physically ill twice this week, and he had blamed it on the pain meds. In May 2015, Steven had been vomiting intermittently leading up to his relapse...and the doctor later blamed recurring disease.
Recurring disease. Disease that had showed up only 8 weeks after a clean bone marrow biopsy.
In a time when my mind had started focusing on the battle in front of us-hip replacements, I think I had grown too battle worn to focus on the reason for this war. My heart rate kept increasing and I thought I would be ill as I felt the last two years play through my mind like a movie reel. I counted back the weeks since Steven's biopsy and knew we were right at the six week mark. Six weeks...more than enough time for things to change.
Unable to stand the anxiety anymore, I sat up in bed and turned towards the sleeping Steven. I put my hand on his forehead, and then his cheeks, searching for a confirmation of the fever I feared was there. He stirred and turned away, in an unconscious effort to remove my hand from his face.
His face felt cool.
Steven continued sleeping and I knew I couldn't. Lying there in bed my mind would not be silenced. I went into the living room and sat in the recliner, in the stillness, and took in my surroundings: my home.
My prayers for Steven's continued health turned into prayers of thankfulness that I was sitting in my home, with my children in their rooms, sleeping soundly. I also prayed, with fear clenching my heart in a way that I hadn't felt in a while, that God would spare us all from revisiting the hell that we had been through two times before.
I am unsure as to why I have experienced a resurgence of the anxiety, fear and depression lately, but I am sure some of it is self induced. As I wrote before, sometimes our minds are our own worst enemy. Expectations should never be made because they only set you up for failure, and yet time and time again, we have them. Expecting life (and Steven and I) to get back to normal is probably the biggest culprit.
Steven's personality is altered by the withdrawal of prednisone. (One more week and he will be completely off of it.) I think this is a fairly common occurrence, and he is not alone in this phenomenon. However, surprisingly, he is unaware of the change and says he doesn't notice the increased agitation. He knows it's happening because those of us that live with him have told him...and we (halfway) joke about keeping our distance. Sometimes this exacerbates the problem, but it is a lose/lose situation either way.
Positivity that once was Steven's trademark has been traded in for negativity. His normal laughing demeanor and mischievous eyes, turn harsh and cool. No conversation goes without him putting this new stamp on it, which, at times, leaves me avoiding conversation entirely.
I know that this will pass, and that the pain he is experiencing magnifies it all. If I had severe pain that prevented me from being who I have always been, I would not be the most uplifting person to be around either.
I do not fault him for any of this.
But I do feel it.
And I miss my husband...even when he is lying next to me in bed.
I do get to see the "old Steven" when he is visiting with friends, mainly because I think it's easier for us to slip into a different persona when dealing with those that aren't privy to the ins and outs of our day to day occurrences. I believe this is normal and, honestly, I am glad that it is. Not only does it allow me glimpses of Steven's humor and charm, it reassures me that he is still Steven.
And I so love Steven. I do.
In sickness and in health.
Please know that this is, in no way, an attempt at gaining sympathy, or painting a picture of "poor, poor pitiful me." (Anyone who sees me and all my excitement at the kids ballgames can attest to the fact that I am not a fading flower.) In fact, I don't really know why I needed to even put this in words other than it being my mind's way of sorting out all the clutter that is inside it. I had a nurse in St. Louis once stop me and explain that she had found my blog and she asked if she could print off certain posts for family members of her patients. She explained that she believed it would be beneficial to them to see someone that is on the same path, and to gain comfort in knowing they weren't alone.
I don't necessarily believe that this post is one of those posts, but who knows? It might be. If I only shared the upside to the transplant/recovery process, it would be a disservice to anyone who might have walked a similar path. There are downsides, albeit in contrast to leukemia, they don't hold much weight.
This process isn't one that is over once you hear the word "remission", although how amazing would it be if it were? This is a new life for us. A "new normal" to quote an overused term. Medications, doctor's appointments, restrictions, etc. is part of our day to day life, and we are barely 40. Although necessary, there is nothing normal about this process... The transplant, the chemo, the medications, the effects? None of it normal.
But we are here. And we are still moving forward.
One thing is certain: the view up ahead looks a lot more promising than the view looking back.