Eggs, Bacon, and Coffee

Jenny here. 

Today's blog is a relief for me...all I had to put out there and organize were your sincere questions to Wil!  (And maybe smile real pretty when asking him to answer.) Truth be told, my man of few words didn't balk at the suggestion.  Which surprised me. And I sat in tears as I read his very beautiful "simply Wil" answers. 

If you know him, you'll hear his voice in these answers. If you don't, understand he says what he means, in truth, peace, and just enough energy to get his point out. So when he expounds on something, you know it's important to him. And my heart melted, like he does to me so often, when I saw a few answers that had the highest word count :)

Medical wise we have had a busy few weeks with Wil being poked and prodded for samples of blood, marrow, and fluids. Next week we will hopefully get some results and see where we hopefully are with remission. Blood count wise Wil continues to improve. He is still on one immune suppressant but there is talk of coming off that soon if he's doing well. 

That CMV keeps rearing it's little head.  It's detectable but not quantifiable so no worries at this point. Watch and wait. 

Same with his possible skin GvHD. It presented itself about a week ago. But of course, not in a typical way. It looks like GvHD, but didn't show up in the most likely place. And his overall blood work doesn't necessarily support it...either that or it's very mild. Which we'd take in a heartbeat!  

Side note:  Mild GvHD, unlike severe which can be life threatening, is a good sign of strong fighter T cells who, although attacking his face and neck right now, could be contenders against leukemia returning. His main doctor had been on vacation so we will see what she thinks this coming week. For now, steroid cream and...watch and wait. 

But the waiting is sweet right now and involves, on non clinic days, sleeping until 11am, TV in bed, and eggs, bacon, and coffee for the first meal of the day...at 1pm. 

Life is so different these days. In all ways. Yet...good. Very good. I can't quite explain it, but we have found a new level of peace lately in the individual days of post transplant. In between realities.   But more of that in the next blog because this entry is all Wil....

I promised him the only question that was mine was the last one. He likes to think I added in the "awesome wife" question because in our house if he starts out with, "Did you know..." and doesn't answer quick enough, I've been known to interject with "that I'm awesome?"  But for the friend who submitted that one, if you want to identify yourself and save me from Wil's disbelief, feel free. 

What's the weirdest experience you've had during this whole experience?

   

Probably my first lumbar puncture or    spinal tap.  Having to lay down for an hour or so was very odd the first time.

 

How would you prefer people treat you or converse with?  

       

Treat me the same as before.  My brain is not that compromised.  Converse like normal.  I don't even mind talking about the journey. 

   

Do you want to talk about treatment and what's going on? Or do you want people to just hang out and not mention it?

         

Like I stated before, I don't mind at all, but we can talk about other stuff, too.  

 

 

What's your favorite pasta sauce now?

        

Right now, marinara on most pasta.  Cheese on macaroni.  

 

 

What were the moments where you felt the most supported by people?

        

This is a tricky one.  Mostly the few visits I got from friends and family.  There were times that some of them went above and beyond and I was greatly appreciative.  

 

 

If you could go back in time, before cancer, and tell yourself anything, what would you say?

      

Make up your mind and get back into school immediately.   

 

 

What are some ways that your wife has impressed you during this experience?

        

Oh my goodness, how has she not.  She made me her top priority although that is not how it should go.  I don't know how other caregivers did it, but I could not have had a better one than her.  Usually, spouses leave due to the pressure or fear, but I believe she'd be damned if she gave up.  I may be the one being poked and prodded, but she is taking care of everything else including being one of the best advocates ever.   I get scared if the shoe were on the other foot (knock on wood).  I just don't think I would do a great job, but I will damn well try my best. 

 

 

What is something you never get tired of?

       

Sleeping in and being with Jenny.  

 

 

What is the best way for people to support you?

       

Being there.  Taking an interest in what is going on.  Really caring about what is going on.  You don't have to be there 24/7. Hell, you can be there once a month, but have us feel like you truly care because we can sense the fakes.  Oh, and if you feel like you need to ask us or yourself where you lie, your support is probably not where you think it is.   I know that sounds harsh and I apologize.   

 

 

What is the worst way people have tried to support you?

        

I think I need to plead the fif on this one.  Previous answer was partially harsh enough.   

 

 

So many people are inspired by your marriage.  Can you give insight to how you are such a team during this time in your life?

      

Aw man!  I don't know.  I don't think it changed from before diagnosis.  We have always had a pretty strong marriage.  I feel this time has made us stronger, closer, and more awesome.  So I guess it did change us some.  We have always had each other's back and kept each other in check (even now).  No one can pin us against each other.  One of the best pieces of advise I can give is communication.  I know it sounds cliché, but dammit it is so true.  Talk everything out.  Be an ear during those venting sessions.  Don't hold stuff in.  It can kill ya.  I am still working and improving on this.   Also, keep loving on them.  Show them as much affection as possible.  As an Aquarian and an Introvert I have had a hard time showing affection and emotion.  Along with communication, I am working to improve this flaw, but you can't doubt my love and loyalty to her and vice versa.  We just go with the flow and work it out.  Plus, be true to the relationship.  If you seriously not feeling it anymore, get out!  Unless you can work it out. 

 

 

Has cancer led you on a spiritual journey or helped you grow?

       

Not necessarily a spiritual journey.  I know that sounds bad, but my faith is as strong as it was before.  Not that I am saying being on a spiritual journey means you started out with shaky faith.  That's just where I stand.  It did help me grow in my marriage and my knowledge of the medical field. 

 

 

Do you know how awesome your wife is?

      

Yes I do and I know she did not coerce this question *wink wink*.   LOL!  Just kidding.  No, I do know she is extremely awesome.  I don't know how I would be able to go through this without her.   

 

 

What advice would you give to someone newly diagnosed?

     

Hmmm.   Keep your head up.  Not going to lie about how scary the journey can be, but it is up to you on how you handle it.  Keep a strong positive attitude, stay focused on you and the task at hand, make sure your caregiver (if they have one) is taking care of themselves while taking care of you, don't lose faith, and do what the doctors and nurses say.

 

 

If you could go back to the first week after diagnosis, is there any advice you would give yourself?

No matter what, keep a positive attitude.  Took me months to perfect that.  

 

 

What has helped you cope with this long journey?

      

More like who.  Jenny 

 

 

Have your dreams for the future changed since being diagnosed?

      

They may be compromised a bit, but no. 

 

 

What is your biggest fear and biggest hope?

       

You can guess my biggest fear (I refuse to say it here).  My biggest hope is complete remission.   

 

 

What are the biggest misconceptions about the cancer journey (assumptions people make or say about what is like to be in your shoes)?

      

Probably when people with different cancer diagnoses, where their journey was lighter than ours, try to equal it to ours assuming what we went through was the same thing they went through, until I spell out our experience to them.  I know I will never compare my journey to anyone else's, even if they have the same diagnosis.  RIP Devan.

 

 

Is there one moment in the last year that sticks out in your mind the most?

       

Other than the transplants, losing my baby chihuahua, Bella (sorry for bringing that up Jen).  There are times she pops in my head, especially now that we have Violet.   

 

 

What do you think about your life, and your wife, being so public now through FB and the blog? 

      

My life:  I am still alive and plan to stay that way!

      My wife:  She is everything to me.  The best blessing in my life.  

      Being public:  I feel very great about that and feel my wife is doing a wonderful job with it.  

 

What was the happiest day for you in the past year?

The day of discharge in October. Coming home. 

Much love, Wil