Adventures 'N Edukashun: First Class Back

Adventures 'N Edukashun: First Class Back: Hey folks.  I have been meaning to post about my first class since returning school........again. Me and my wife have decided that I shoul...

Full

Jenny here. 

In just a few days, our move to our new smaller, but fuller, life will commence.  I may not be sleeping much in the next few days between working and sorting and packing!

For the past month we have been sleeping on our full sized bed, knowing the king would not be doable in the new smaller space but, also not wanting to shell out the cash for a new queen mattress and frame.  So far, so interesting.  I mean, we did spend about 7 of our 16 years together on a full size bed already…but after a king…well, it’s an adjustment. 

I have missed knowing someone was there next to me (let’s face it, the beauty and horror of a king size bed to me is feeling like you are sleeping alone, and as of the last few years, we have already done SO much sleeping alone, due to hospital stays, that I have missed throwing my arm...and cold feet his way). The good:  Having him right there.  Ugly:   Life on a full size bed requires really working together, understanding, and no room for any dramatic, angry turnovers if things are strained! 

The whole sleeping arrangement has had me thinking a lot about our move, our new start, new chapter, and how the word FULL keeps sitting on my heart these days.  It’s not easy to down size.  It means so much more than just getting rid of stuff (that part has not been as hard as we thought it would be).  It’s another little reminder of the dreams we had that have died…Of the hope we had moving into that house…of the quick spiral into cancerland…of such precious, raw, traumatic, real, lovely moments in that house that changed us forever.  Where he walked again and smiled again.  Where I threw up on my slippers but leaned in with love.  Ashes to ashes.

Yet, just as we mourn, we also feel so much more alive and have hopes for the fullness of life to continue growing in us through this transition.  There is relief in this decision.

I used to love the merry-go-round as a kid, the faster, the more centrifugal force the better.  Why was that stomach turning experience so much fun?

Do you ever just have a moment in time where you can ACTUALLY see events of your life spin, full circle?  And the energy that comes with it is amazing, alive… and makes you also want to vomit? This month has felt a little like that…a merry-go-round.  Holding on for dear life.  Exciting and very emotional too.

Wil.  Medically he looked good at clinic last week.  Counts are good.  His oncologist is happy with where he is at right now.  He will see her again in August.   His mobility, neuropathy, sleep, and weight seem to fluctuate so much these days.  He is sleeping a bit better after increasing his Lyrica (the neuropathy makes him a very restless sleeper)…but it has made his leg edema and weight increase.  He continues to try to increase his activity level, but the aforementioned side effects of meds and kicking cancer’s arse, just make it hard.  Do you pick sleep or weight gain?  Chronic pain or edema?  We hope this won’t be a forever impossible choice and that the neuropathy will get better in time…but I can read…and these are often things that persist for a lot of survivors.  One day at a time for now on that front.

For Wil, I feel like (this is my opinion, wife blog, so he may disagree!) this month has been just plain overwhelming.  On one hand he is excited to move too.  He got an “A” in his sociology class (he worked so hard in his first class post cancer and is now looking a summer courses).  Good stuff!  But every coin has a flip side, and his has some darkness…different than mine…still so fresh and real.  Anxiety, trauma…these are real post cancer things and can pop up in unexpected ways.  As a wife, and unfortunately a trained clinician (which makes me painfully aware but, too close to home when symptoms arise, to be rational) it can be hard to watch.  He can be flying high on life and hope one moment, only to be anxious and angry the next (yes, dear hubby, I know this description captures me most weeks as well…we are quite the post-treatment pair trying to find our way together!). 

Here’s an example:  The other day he was very worried about something that was so farfetched and unlikely to ever occur.  Worked up, couldn’t get it off his mind the whole night.  To me it looked like straight up irrational panic, at almost a paranoia level.  He knew it.  He’s not without insight.  I kept pushing and we were both getting frustrated.  How could he be so distressed over this one little thing?  And in his mind, how could I not see it was huge because it COULD happen?

**Side note:  I am the worst at supporting him in these moments.  My mind races from fear/sadness to therapist mode analyzing to just being angry that he, that WE, have to deal with this at all!  My most regretful moments as a wife are these times…when I just want to or do tell him to get a grip…even though I know he’s spinning and really in a stuck spot on the merry-go-round and about to fall off or puke…when I could use a bit more compassion than I show.  I guess I’m outing this phase because it is such a big, hard stage.  And not really exposed as much in blogs and online chats, as the treatment days. **

And then he finally blurted out what made my heart stop, drop, and understand more fully what all these little anxiety ridden moments, that used to be no big deal, really encompass: 

“They said my transplant wouldn’t fail.  But it did.  All those side effects that were so rare, they happened.” 

The almost impossibilities became realities more than once and that hangs on your being even post-treatment.

How do you trust your instincts, your universe, your future, when you went through a process of being stripped of all of it?  Of melted down, processed, and having almost no control over your person?  Of not knowing day to day what your body will do or won’t do? 

This is what it looks like folks, in cancerland, or I imagine any chronic illness:  A man with a zest for life and endless laughter, that also wears the burden of chronic pain and the emotional worry and mistrust of his own plans…both sides he’s so rightfully earned.  Gosh, I feel like the path is right there, that we are on it, that we are looking forward.  But even as your mind moves forward and your heart expands, your body remembers the pain of the past and those deep neural pathways of foreboding can pop up and persist.

This week Wil also had a quite an orbit moment when he saw a loved one have a pre-transplant BMA at the hand of his own beloved BMA mid-level provider (who was the first staff person I ever met at BMT clinic the day Wil was transported from the SNF and his vitals tanked…the person he always requested to do his BMA’s but has since left UTSW and is at another facility…someone who sat down on the couch after failure to graft and was real and who always gave me that “you’re doing amazing” acknowledgement I needed in the dark days). 

What is the likelihood that Wil’s loved one would be getting the pre-transplant BMA, at a different hospital, by the same person?  It’s a small, small, BMT world.  And, what a weird thing to be seeing it from the third party vantage point, in real time.  I have watched all of his BMA’s and they are not for the faint of heart. 

Full.  Circle. 

He knows the pain of having the procedure, and now he knows the pang of witnessing another’s anxiety and suffering through the same procedure. 

Wil wants to be everything to this person, but knows he is still healing himself and has limits, even the other doctor noted it to him.  He’s doing well, but still healing. 

He wants to be there for them like I was for him, and in the way he wished more people could have been there for him.  It is true Wil, but with the dash of reality that he still has to monitor his own well-being.  The mind and soul are so willing, but the body…

I, on the other hand, am dealing with mixed feelings about it all.  I’d like to be the bigger person and run to the rescue, but in all honesty, I lack in that area right now.  I will help support Wil in his helping and processing this situation, I will cook the best neutropenic meals to pass on, send energy, but keep my distance (a decision that I think is right for me, but hard to admit to out loud.  I know the possible judgments that saying “I won’t” can bring, but I have my own emotional limits right now).  I’m not wishing any ill will and hope for the best, having seen this process up close and personal…but I still feel exhausted and still feel the injury of forgotten-ness from family I had hoped would be there for us when we needed it.  And, pure truth, there is the anger at the injustice of another person in our life with a blood cancer and the fatigue of our own life being enough to bear right now, without anything extra.    

Keep us in your thoughts.  We’re learning that post-cancer chronic pain is much more than just physical.  It exists in the person and the caregiver, just in different ways.  And that on most days, we are OK.  Better than OK more than days than ever.  And when we are not OK that, in and of itself, is absolutely OK too.

Entire.  Overflowing.  Bursting.  Running over. 

We are FULL on so many accounts right now and learning how to rest comfortably in this new, sufficient life.  Complete imperfections.

Much Love.

 

Horizon

“To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never to forget.”   ― Arundhati Roy

Jenny here.  A little update about April. 

Two years ago this past month, Wil was in between chemo-cations, still rebuilding coordination with his walking, sans eyebrows, and exhausted.  But like the Texas bluebonnets in the spring, he was back up and alive.  And on the very anniversary of that special day, we took a trip to Ennis this month with the pups and took a few photos of our own. 

In 2 weeks we will pick up our keys to our new, smaller life.  I cannot wait to nest in our new digs, one-third the size of where we live now. 

Quality over quantity.  For life, love, experiences, relationships, possessions.

Wil is doing great.  Medically counts are in the normal range, low end, but normal.  He saw his new PCP and the appointment went well.  We are being transitioned over there because he mostly has normal stuff now (monitor blood pressure and well being).  He will see his oncologist in May and then, wait for it…not again until his second anniversary of the transplant (October 2016).  Sure, he has a few other follow-ups with various specialists, but just routine follow-ups.  His neuropathy and chemo brain, still persist, but that man is a beast.  He’s trying his best, even if it takes a bit longer to process or get somewhere.  Admittedly, it’s hard for me to watch.  I know what he wants to do, what he used to do, and it kills me to see how much harder he works at things now.  It takes more energy and there is unresolved pain from all that high dose chemo that, like many cancer survivors, often persists indefinitely.  But he’s at the end of his first class since diagnosis.  He worked hard.

While I still often feel drained, and sometimes just break down and cry over the ash heap, I feel as though the purge of the household in prep for our move, is stirring things up in a healing way.  This move signifies so much more.  A few months ago, the thought of moving was so heavy.  It felt forced.  Cancer has broken us financially in way that will last quite awhile.  So downsizing to ease up on expenses, although the smart thing to do, was filled with yet another grief.  Then is changed from grief, to pops of sunshine and some hope, knowing we were doing the right thing.  I can’t lie and say I have moved through all of that heaviness, but the load…it’s lighter some days.  Losses (for me or just witnesses them for others) seem to kick me harder than they used to and deaths impact my heart more intensely.  Weighted.

A few weeks ago, during all the beginning stages of grief over my furniture I would need to sell, we watched the show Empire.  And this song, Good People, was performed.  And it so touched my soul in places that hadn’t been attended to in quite some time.  Sometimes healing comes in all forms and unexpected places.  Wil and I have listened to it now time and time again.  His face, serious.  Tears streaming down my face. 

“Sometimes it’s hard to pray/Sometimes it’s hard to stay grateful/It’s painful, hurts so bad/Sometimes it’s hard to breathe/Gets hard to keep goin’/We keep holdin’ on to what could have been

“But we’ll get by/We’ll see the light/In the morning it’s gonna be alright/The circumstance/Is in the plan/Even if we don’t fully understand/Why the bad thing happen to the good people


"Good People" from Empire:

 https://m.youtube.com/watch?v=xfvzJ-jDcz0

Our life is starting over, once again.  And we can’t wait to show you and share it as we unwrap and uncurl.  What will the next half of 2016 bring?  It’s so hard to say.  For Wil, he has a million ideas of what to do with this bonus time in his life.  For me, I am drifting along…go to work, come home to my favorite person and favorite furballs, cook, laugh, rest, cry all colored tears.  Repeat.

For both of us…the horizon.  Morning.  It seems to be getting closer every day.

Much Love.