Saturday, February 14, 2015

Asymmetrical Love

"The measure of love is to love without measure". Francis de Sales

Jenny here. Being it Valentine's Day, the subject of love is all over the place--media, signs, FB, menus, and people's minds. Everyone seems to measure relationships and love and worth on key holidays like today. 

Wil and I have never been much for celebrating February 14th. We aren't anti V-day. If you haven't noticed I'm completely smitten with the dude. So we haven't taken some stand against the commercialism of the day. We just prefer no crowds, discount flowers, and clearance chocolate. We're strategic!  In years past we would celebrate a few days later, living high off the post holiday sales prices....enjoying an empty restaurant meal. This year we may catch a movie at some point next week...or maybe not!  Life is all about home right now. 

This past week has been quiet for the most part. Wil's counts and numbers continue to either remain steady or improve.  That crumby CMV virus is now undetectable again. We are on the weening period with his last immunosuppressant med. We are holding steady and that means clinic visits are more spread out. It makes for a disorientation of days, for me at least, since we've had a pretty consistent clinic schedule for months now. 

His oncologist doesn't believe the skin rash is GvHD, but maybe that his skin oil glands are attempting to work again. The rash is still there though--itchy, bothersome thing that it is. And no amount of coconut oil or lotion keeps it hydrated. 

In addition, his skin this week has occasionally, each day, started to have a spreading, stinging sensation that has him crippled over in pain for 5-10 minutes. We had an impromptu check- in at clinic on Friday. It's not shingles. It's not anything specific at this point. No ER needed. The only real way, it seems, to get more info on it would be a skin biopsy. But no one is jumping to that just yet. For now, crossing fingers it will improve over time. 

With the days spreading out between appointments, me with more sleep and energy and time, I'm starting to do a few little things for myself. I'm taking on a few new clients. Picking back up with hobbies. Enjoying unrushed showers. And this week, I finally paid for a haircut and color. (It's been well over a year since I paid for one, thanks to the haircut fundraisers and being an "interview model"...all thanks to the marvelous Mindy). It was long overdue, as are most personal things for me in the past year.

Side note:  What did this girl request for a gift this year?  A work bench and a new set of metal stamps. I just love the metal stamped jewelry. It's never the same piece twice. Imperfect each time. A little messy and frustrating and then all of a sudden, breathtaking simplicity when it's done.  I may get that Etsy page together yet as I find ways to define a me outside of cancer caregiver. Stay tuned!

Hair is a big deal though. It can make you feel fresh and new even in the middle of things. I've always been the person who missed out on doing something more edgy. I often scrimp on the salon and choose other things to spend money on. Growing up I either had my grandma cutting my hair for free or I was worried about going outside the very traditional, long hair box. I kept it uncomplicated.  Ponytail ready. A few years ago I went shorter, but still pretty classic.  And there's been nothing terrible about it. It's been functional. 

But lately I feel so drawn to create things and a life of my choosing. Lately I feel a shift towards etching my own happiness.   Lately I'm not so entangled in expectations of others.  I care deeply about relationships, but I'm working on expending energy on me these days.  And the expense for the salon is worth it...There's really no feeling like it...and I need it as a first symbol of putting *me* back into the equation.  While I've known it's important all along and known that I should be a priority too, life in the BMT arena, or any caregiving, is a huge adjustment. And takes time. I just wasn't ready before. And that's ok. No shame. No guilt. No regrets. I'm finally here and ready to connect with this new woman I've become. 

Maybe it's the cancer. The counting of days, breath holding, that has slowly evolved into a savoring of the minutes and learning to exhale. Maybe it's this new chapter we are in...grounded, settled, loving space to just be. Laughing out loud a lot, in waves of uncontrollable wonder and happiness. (Recently I realized it was just a year ago he learned to laugh again. A moment I will never erase). Or maybe it's working 40 hours in a cube (God bless my job with supportive peers and awesome health insurance...but I still look at 3 walls of muted toned, scratchy fabric, for many hours a week in the name of making a living. But don't misunderstand, it affords me a life with Wil, which IS the life of my dreams, so no big compliants here!). Whatever it is, I'm ready for renewal. And it's already starting. I can feel it welling up from the depths and replacing sorrow. 

As I sat in the chair at the salon this week, being unintentionally unhelpful to my sweet stylist (because I have no vision for this type of creative venture), I told her the theme was "I just made it through the hardest two years of my life.  Alive!   I need something sassy." However she saw fit, I was in for the ride. 

And the color got mixed and applied. And I took time to detach from the road travelled in order to just be there, present for the sights and sounds of the experience...the rinsin' and cuttin'...and hair aflyin'. 

And what I was left with was a whole new, fun, sassy cut. Deeper, red and brown hues highlighted by the occasional blonde strands. A new start to this next life. 


As I have woke up a few mornings with the new style, extreme bed head nowadays (on just the short side though,  LOL!), I've had some time to think about how my newly inspired 'do summarizes where I am right now....And how I see love and marriage and the years and the journey. My hair and all those three...Asymmetrically wonderful. 

 (Mindy, you got it SO right!  And I feel more like me than before.)

The defintion of asymmetrical is this:  the absence of symmetry. A violation to plans. Unexpected. 

Per science we find people with more symmetrical features to have greater beauty. So at least up front we search for proportion. And in many biological ways this is not a bad thing. Sameness. 

Even in our search for that mate and perfect life we are attracted by symmetrical ideas, views, and physicalities...yet true identical symmetry isn't really possible...and I'd argue not always desirable.

The core of the human body, mostly bilaterally a mirror of itself, contains this blessing of asymmetry in our heart. Not the fru-fru pink and red kind you give out with candy today, but that central organ in your chest. Those squishy, spongy things that expand and contract to get us oxygen?  Those lungs are situated around that asymmetrical heart, and guess what?  They evolved to an asymmetrical shape to fit and function alongside it. Two life sustaining organs. Nestled around each other. Neither proportioned, but in harmony.  Between each side and each other. 

We can fight life's asymmetries or grow around them. Some years are longer or harder. Some people are given more or less or different struggles. Sometimes you are the patient and other times the caregiver. And there are moments or stretches where one person goes the distance when the other can't. There's nothing to compare or fix. That's the point. Every piece of this existence has it's value and place.  Unexpectedness is hard but not without a powerful purpose. 

My valentine guy remains more of a complimentary force in my life than any mirror image I had hoped to find. Our marriage is challenging because of the asymmetry of us and the circumstances life has given. Because of this we are growing into our lopsidedness to an even deeper hue of sentience. 

The imbalances of life won't be what we seek.  In our humanness we are drawn to the "safety" of symmetry. Who would want disorder?  It's why we are fortunate to sometimes be in a place of unexpected mercy...even if I could go back and somehow prevent cancer, I'm certain, down to my last cell, that as it stands now I wouldn't.  My stomach drops just typing that because the arrival of who we are has come at high costs and pain.  On one hand we can't wait to be less engulfed by the treatment process. Interference with the long bumpy road that just happened to crash into us?  We wouldn't be here...Exactly where we are...and in the space I know we are supposed to be....without the bumps. 

So for you, my virtual Valentine's, today i wish you love without measure and a life full of unpredictable, incredible wonder...scary as it is...that will set your asymmetrical heart on fire and fill your lopsided lungs with a messy bounty of fresh, unexpected blessings.  Breathe deep and feel the rhythm of all your life is right now. 


(There were no Charlie Brown cards with that exact wish, so I hope that will do!)

Much love. 





Wednesday, February 4, 2015

Undetected

Jenny here.

This time of year will always bring back memories for me and Wil.  Two years ago we had just moved into our house, full of excitment for a new chapter in our lives.

I often think about how starry eyed we were.  Wil was turning 40, back in college finally, pursuing his dreams that all of a sudden felt so clear to him.  He had just finished his associates degree and had transferred   into his 4 year college.  I thought to myself, in 5 years, by the time I am 40, Wil will be done with his degree, we will have a baby, and I might just convince him to move back to Minnesota to start his teaching career.  

Little did we know that, undetected, cancer was already in the works.  And within a month I'd be rushing to the doctor's office, Wil doubled over in pain.  But 2 years ago, on his 40th birthday, anything and everything in life seemed possible.  And then for over 8 months cancer would continue to be undetectable by biopsies and we'd ride the pre-diagnosis roller coaster.  I would feel like we had made it around several twists on that ride.  Little did we know that the major climb and gut wrenching first drop hadn't even happended yet.

So Wil's birthday, one of my favorite dates in in history, other than our anniversary,  is also the marker of how many years its been since I lost my innocent view of what was to come in life for us.  I don't know why, but I often wonder about how long and when cancer started before it was on our radar.

Yesterday was Wil's birthday and it started out with living life on the edge and picking up breakfast at the local donut shop on our way to clinic. I know, we sound like real rebels!!!  But we don't often risk any outside food no matter what the celebration.  Risk takers.  That's how we roll!

At clinic during Wil's blood draw, the nurses, who had been so sneaky last week to ask him what kind of cupcakes he liked, surprised him with red velvet and song.  Wil is genuinely a pretty happy person, but a tough crowd.  He's even and steady but that also means he isn't in need of big productions.  It takes a lot to get him upset or rattled or even surprised.  Despite that, he was very taken a back by the team effort and they had him smiling ear to ear.  And touched.  His motto, ever since I have known him, is "I'm just happy to see another year."  No presents or party needed.  This year that motto means even more.  But the enthusiasm of the staff, their genuine happiness for us, it swept him away too.  It was fun to see.  We deeply appreciate these people who care for us all along this way.




And then we met with Wil's doctor, nurse, fellow, and mid level provider.  We knew the day would include results from all the post transplant, day +100 testing:  the extra blood work, MRI, lumbar punture (spinal fluid), and bone marrow aspiration (marrow and fluid flow study).  And do you know what I love?  The fact that none of them could keep a straight face until they presented the results to us.  Smiles.  Happiness.  Disagreements about who would meet with us first to go over the tests.  Before the fellow even said hello to us, she burst out with "we have good news today."  The rest, the details, important I guess.  In their faces, however, I could already see what I needed to know--hope.

Side note:  It's easy to forget how much days like yesterday mean to those around us too.  The oncologist's nurse said that she was beyond excited and had been checking on results all last week as they rolled in, sneak peeking.  She said the night before her and our transplant coordinator looked through the packet of results.  She said "We hold on to days like this because it's not often we get a day filled with good news to share."  She had gotten to work early and was excited to see us.  

And so the results:
Bone marrow aspiration (BMA):  Leukemia undetected.
Spinal fluid:  Leukemia undetected.
MRI:  T6 mass, no longer detected (some structural damage, evidence that something 2 years ago had grown there, but the mass itself?  Gone.)
Blood Typing:  100% B+ (donor) and Wil's original DNA?   Now undetected

Undetected.

"Complete Remission."

Just as queitly as cancer creeped and came into existence, so do we now move into the next chapter of this journey.  

Our old BC life?  Well, I think I'd have to say it's  undetected now too.  We are new.  Wil on the inside, but also outside.  As his body and medical team have worked to shrink that which has changed us forever into an undetection, so has our former existence shrunk and disappeared.  Life has evolved and there is some sort of real joy we can't explain.  Joy that has nothing to do with the results of today.  Yes, a million times yes, we are happy that we are on the right track, that treatment seems to be workng.  But lately we have come to a place where the desired outcomes, although important, are not as interwined with how much we love this life...how much we enjoy each day...or how much we appreciate each moment.  

We are living life with less fear.  We are not as shackled to those starry eyed dreams because this...this day, every minute with each other...is the best I could ask for...and not overshadowed by circumstances beyond our control (or at least not as often anymore).  

It doesn't end here.  The road is still long.  But that's the point.  It.  doesn't.  end.  here.  Not yet.  

Wil is starting to ween off his last immunosuppressants.  Now is the time to really monitor, even more, for any chronic GvHD.  His blood work looks amazing.  Those cells are growing!  We still have to be ever so careful about him contracting flu or infection.  There are still unknowns and no promises.  Hugging on those nieces and nephews will have to wait a few more months.  But we are on our way to that being a reality by getting off more of the meds.  There is road ahead and we will take that, and whatever it holds, every time.

Wil is OK now to have a few non-crowded community adventures...with precautions he can have a little regular fun at non-peak times.  It's still flu season so we are mindful.

So what did we do on our way home from clinic to celebrate his birthday?  I mean, WHAT do you get a guy who right now, in this day, has been given all he needs...the best gift EVER...the gift of continued life...???

(I know you all had been anxious for this blog and results, but life deosn't wait, so these pictures are the reason we didn't post earlier...immediate fun had to ensue first).




A movie of his choice.  In a  theater...with snacks.  We saw the Hobbit, in 3D...a movie that we missed and that is about to leave theaters.  No crowds.  Just us.  A little piece of normal.

I sat there, snuggled up against Wil, snacks and a geeky movie a-plenty.  I can't lie.  I want so many more of these moments and years with him.  I am not always in this moment.  I still dream of growing old with him.  But I will take whatever this life and Universe affords us and not look back.  And in my head, the last and most important addition to the birthday song that staff sang to him at clinic reverberated again:  "And many more."

We will enjoy these moments, every last one.  I know it, beacause the old life is no longer there, cancer took that, and in its place came a presence, a grounding, to live the life we are given.  No regrets.  No checklists for a perfect future needed.  All we need is here.  Right now.  In is, between us, around us.

Much love.





Sunday, February 1, 2015

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