Thursday, September 25, 2014

Hard to Handle


I’ve been a little emotional the last two days.

No, I don’t know anything new.  No, there hasn’t been any change.

 It’s just me.  Probably hormones.  And some fatigue.

Steven felt a little drug out yesterday, and a little tougher than he had been feeling.  After two units of blood, he perked up.  I have seen evidence of his impending hair loss, but it isn’t something he wants to actively discuss.  I shared with him that some people recommended shaving it off, and having control over it, but he was aggravated that I brought it up, and stated that he “wasn’t too that point yet”.

I get it.  He’s mad.  Not about the hair.  Not about the cancer.  I think, primarily, he is mad at all he is not able to do for others, namely, the kids.  The hair will just be an unavoidable reminder of this.

I can understand his frustration. Although, I am sure not fully. 
 
I also feel as if I am running around, between places, and, sadly, I’m not doing any one thing well.  Unfortunately, I can't take this away from Steven and what I can do is limited.  I can't talk about the things that everyone has done for us without upsetting, and overwhelming, him.  I can't talk about the unknowns and uncertainties, because they are unknown and uncertain to him as well.  About the only thing I can do is be here for  him.  Physically.  And, some days, that seems to be all he wants.  Just my presence.  And I feel good about that.  Lying next to him gives me comfort.  If I am able to return comfort the same way, then it gives me purpose.


(I had to post this picture.  He looks SO handsome.  Those eyes...)

 
The kids understand his frustration too.  They are dealing with their own anger. 
 
They are angry their dad has to go through this.  It’s natural and I don't blame them.  However, like their daddy, they are not prone to dramatics, or screaming, or crying.  They don't talk about how bad they have it. 

No.  That's not their style. 

Their frustration and anger are funneled differently. 

Lakyn, nearing the precarious period of teenager-hood, was already showing signs of the attitude and dissatisfaction that comes with it.  Our current situation has magnified this. She has always shown respect to others, and I can’t imagine that this period of our lives will change that.  I pray it doesn’t.  But, as moms everywhere know, we, moms, don’t count as “others”.  Sometimes dads don’t either.  However, right now, showing attitude to daddy isn’t an option, and I am the one on the receiving end.  If I said the sky was blue, she would tell me it wasn’t.  If I said the grass was green, she would say it isn’t. 

But it’s ok. Really, it is. And at times I need to remind myself of this. I take deep breaths, which she always notices and comments on, and I tell myself that I should take it as a compliment.  It's a compliment that she knows I am her momma, and that I love her, and it's a compliment that she knows I am not going anywhere.  She can be difficult, she can disagree, and she can push me to the limits, but at the end of the night, we are going to snuggle and say “I love you” and go asleep knowing that tomorrow, we will face it all together.

Blake?  Well, Blake, just needs constant explanations about what is happening.
 
Constant. Explanations.
 
The more details the better, and he wants to feel he has control over it.  Right now, Blake is focusing a lot of energy and worry on the fact that we might not be home for Christmas. I am thankful that, in this time of uncertainty, the childlike excitement for the arrival and celebration of Christmas is still something he is thinking of.  I am relieved that he is focusing worry on the quality of Christmas, and not quality of his father’s health.

Kids shouldn’t have to worry about that. 

So, as of now, the timeline we are looking at, is as follows:
 
We are expecting to be here, in Springfield, for approximately another 10 days.  The doctor is hoping to have a one day visit/consultation at Barnes scheduled for us when we leave here.  If Steven was to be able to go home, it would, most likely, be for a night (or two) after leaving here and on the way back from Barnes.
 
Then, he will be readmitted to the hospital here in Springfield, for five more days of chemo, resulting in about a 21 day hospital stay.
 
If Barnes is ready for us, after that period, we would go then and there for the bone marrow transplant.  If not, we would start another round of chemo, which could, possibly, be done outpatient, and continue that treatment until Barnes was ready.
 
I pray Barnes is ready.  Please pray this too.
 
The sooner we get this process started, the sooner we can get it over with, and hopefully, our family can return to our "new and improved" life.

4 comments:

Manda said...

Praying a donor is found.praying.!!!:)

Mary Kay/Rhonda Hill said...

Praying for your family and praying for a donor. This is heavy on my heart just thinking what all you are going through. Stay strong Kim and let God take control. Praying

Anita Zummo said...

I am glad you are blogging. I am sure you need an outlet to talk about all that is happening. But, the person you would normally go to, Steven, is not the right person at this moment in time.

I cannot imagine how hard this is for you, Steven, and the kids. But, I will continue to pray.

I went through a tough time when we lost our baby, Luke. Obviously, what you are facing is much more challenging. But, our situations are similar in one way--we both receive/received God's grace. When I lost Luke, there wasn't anything that anyone could say or do to fix the situation. No one could take the grief and sadness away from me. Only God could do that. So, I went to God for comfort. It is through His grace that he allowed my heart to heal. That is when I truly began to understand what God's grace is.

I believe that all of the prayers being offered for your family are being heard, and as a result God is giving you and Steven the grace to handle a difficult situation with strength you never knew you had. I know it is still extremely hard. But, I think the grace of God can provide so much comfort, peace, and strength in the midst of this storm.

Barnes hospital is AWESOME. I have 2 friends who have been to Barnes for cancer treatments. The doctors are very knowledgeable and will provide Steven with the best treatment options available. For my friends, the Barnes doctors decided on the best treatment, and, then the doctors in Spfd carried out the plan set up by Barnes. I was very happy when I heard Steven would be going to Barnes.

Sorry I am very wordy today. Your family is continually in my prayers.

Anita

Lori Smith said...

Praying for this...