Last week we saw Steven's doctor for the first time since she shook us to the core with the declaration that Steven still had "circulating blasts". As I had earlier written, we have since found out that the blasts were NOT cancer, and as of today, he is cancer free.
However, every time we have seen his doctor we have been met with bad news. We had never once saw her and received encouragement. That alone always left me physically ill before each visit, wondering what we would learn that time.
Last week, however, the tide had changed. Steven had already made up his mind beforehand that he was going to start his campaign to go home. He knew that he was supposed to stay 100 days post transplant (mid March), but he is also stubborn and was going to question what his BMT physician could do here, in St. Louis, that Dr. Holden couldn't do back home.
When the doctor came through the door and looked at Steven and said, "You are doing really good", Steven began making his argument to convince her to let him leave, while I tried to pick myself up off the floor.
History had been made. Her positivity was unprecedented, and as a result, it was also contagious.
During this time I have never felt more like myself...and yet, less like myself, than ever before. It's odd, really.
I have found that, with the exception of Steven, I still have the need to fill silence with conversation. I want people to be comfortable around me, even when I am not comfortable inside me. I want to be "up", and social, and relatable. I want to be whoever I am needed to be by others.
The problem? Just the thought of being "normal" again, and doing "normal" things, brings me so much anxiety. So much has happened since the last time I was "normal". I wish that when Steven and I return home that we could just step back into our lives, and hit "resume" and pick up where we left off. But we can't. And as much as I want to, I know I will be incapable of it. This journey has forever changed the story of who we are. I don't know that we are necessarily better, or worse, just different.
I feel like everything in our lives will now be divided up into two sections: "before leukemia" and "after leukemia".
I know my kids have changed and I am sure that their lives, too, will be divided. They've experienced many things that I was not there to share with them. I know that there will probably be many times that they say to me, "Remember when?" only to realize that it wasn't with me that the moment was shared. I know they've grown, and I know they have formed an even stronger bond with Sarah and Jason, one that can only be formed by being fully integrated into their family, and it is a bond that will last a lifetime. I know that strengthening that bond doesn't weaken our own bond, but I would be lying if I didn't admit that I wish it had never been strengthened this way.
I pray that when we get home that getting back to normal is easy for them.
During the two weeks we were home at Thanksgiving, just going into the grocery store would have me experiencing the first stages of an anxiety attack; my heart would start racing and my palms would start sweating. I would also notice that my breathing was labored and I just wanted to cry. Still, because I just wanted to be "me", I think I did a great job of acting like normal. It was just inside that the turmoil was raging.
And, honestly, I don't know why.
I do know that I first shared this blog publicly because I intended to keep people updated on what Steven was facing, and what the road ahead looked like for both of us. I thought that it would primarily be doctor's reports, treatments, timelines, etc. However, I found that when I would sit down to type those things, something entirely different came out.
I have opened up a large part of myself on this blog, and, honestly, that part doesn't bother me. I've said before that I am an "open book" and that if you wanted "the dirt" on me, really, all you had to do was ask.
What does bother me is that I sometimes feel that I have somehow, inadvertently, made myself to look better than I am, or have painted myself in a better light. When I see comments that praise me, or thank me, or tell me how strong I am, it really makes me uncomfortable. It is at those times that I wish I could pull them aside and tell them, "Seriously? Listen to what I just did yesterday..."
I am so very flawed and I make mistakes daily. Multiple times.
And my faith? So very human.
I can honestly say that during this time my faith in God hasn't wavered, but my faith that my prayers will be answered the way I want them to, has. And the fear of what it means if they aren't answered "my way", paralyzes me.
In one moment I am strong and shouting to the mountains, but in the next I am weak, and in the fetal position crying to myself, or my husband. And I feel guilty for this. I feel as if, somehow, I haven't explained well enough how my faith is so very, very human. It isn't something to admire. It isn't something to try and emulate. It isn't something uncommon. It is just something that I try and cling to, knowing that really, it is ALL I have.
I have shared that I have prayed for many signs during this journey. It seems as if once I get my sign, I need yet another one. My mind needs constant reassuring and faith isn't something in which you can be 100% totally assured. It wouldn't be faith if it could. I have often wondered when will God say, "Enough!"
During these times I find myself thinking about Peter and the time when he walked on the water. I've heard the story since I was a kid, but really thinking about it, and finding similarities in our personalities has helped to open my eyes to the understanding heart of God.
Peter knew Jesus. Like...really, knew Jesus. He had seen firsthand the miracle Jesus had just performed-feeding the multitude. He had spent time in person with Jesus.
He knew him.
Yet...when in a boat, in a raging sea, Peter questions if he is really seeing his Lord. What does he do? He asks for a sign. He asks for Jesus to tell him to come to him on the water...
And so Jesus does.
Jesus gives Peter his sign. But, like me, once Peter gets it, he gets nervous again. He starts looking at the waves and the storm and fails to realize the miracle he is smack dab in the middle of, and starts to sink.
And, again, Peter finds himself reaching for Jesus.
And the storm calms.
The literal, and figurative.
Surely, if Peter, face to face with Jesus needed signs...
Surely, if Peter, face to face with Jesus also was sucked down into the fear...
Surely, if Peter, who denied Jesus three times, still had the heart of Jesus, and never heard the word, "Enough!", then I have to believe that he can understand a very flawed, very human, heart like mine.
He understands all our flawed, human hearts.
So, "When do you think I can go home?"
Steven's question hadn't missed a beat. He did not let grass grow under his feet from the time she complimented his progress to the time that he wanted to know the plan of action.
She smiled. She reminded him that he had just been through a very "intense and complicated" procedure. She reminded him that he still had a rash, which was Graft VS Host disease. She reminded him that he had a cough and with his suppressed immune system, things could go south quickly.
But then she reminded herself that he was "doing really well".
She told Steven that he would probably be home in a month. Although Steven was disappointed, he knew that a month longer was still a month sooner than expected. He nodded.
Apparently encouraged by all the positivity, I took a step of faith and said to Steven, "Maybe, (I knew she was listening as I held his eyes) if your rash clears up and your cough improves, she will reevaluate and possibly let you go in two weeks, instead of a month."
As she picked up her files and readied herself to leave the room, she smiled and said, "It's possible."
In that moment I had been infected by her newfound positivity and couldn't help but think...."aren't all things?"
"Jesus said unto him, If thou canst believe, all things are possible to him that believeth." - Mark 9:23