Love

Jenny here.

I have been absent from blogging longer than is good for me and longer than I intended.  Last week I had a blog all ready to go and lost it in a technological glitch.  Although I write these in a frenzy, with no edits, and a steady stream of my consiousness, they take a lot of emotional energy to release.  But I have to think that this blog, tonight, was the one I was meant to write and share.

After the blog disappeared, as I was pasting in photos, I just couldn't write another or try to recreate the one I had already attempted.  I've spent the last few days starting, and then restarting, another entry.  I just get this heaviness in my gut, flutter of my heart, and I retreat to marathons of Hell's Kitchen or the Gilmore Girls.  Writing these reveals more to me than any other way I process things.

I take plenty of naps with my sweet one, which may be contributing to my insomnia, but I think the real deal of my sleep issues the past few days is something more along the lines of what I'm avoiding.  And I want to sleep tonight well...so here goes everything.

It's November.  2014. 

Wil is doing pretty well these days.  By well I mean, slow and steady progress.  By well I mean I no longer fear leaving him home alone so I can go to work.  His counts continue to improve with little ups and downs, but his body is growing that immune system.  He is eating like crazy, napping a lot, but still losing weight as his body works away.  By well I mean he is walking into clinic without assistance even if it takes longer and with a few rests.  He is showering himself while I hold my breath and stay just around the corner to spot him even though he says he's OK.  We talk more about the long term and I think he is more settled in the idea that it may be awhile before he drives, sees a movie in public, takes another class, or looks for employment.  He floats between extreme gratitude for just being home and frustration at all he has lost along the way and will need to regain.  His only job right now is take care of his body--eat, sleep, exercise, mental stimulation, etc.  And that will be more than enough this year.  

The other day he decided to be "of use" and unloaded the dishwasher.  It was sweet...and absolutely exhausting for him!  I get it from an outsider's perspective.  I can only imagine the havoc cancer has played in his self image, skills, and outlook.  I take it for granted because he is generally a person who has always just been happy to be alive.  Every birthday I have known him he would take the day off of work.  He wants no presents or attention.  He just wants to rest and says "I'm happy to see another year."  This isn't to say he doesn't worry or stress...but he's pretty darn stable 99% of the time.  The past week he seems to have hit an emotional low (from my perspective) since discharge, a kind of "the honeymoon is over" feeling.  He's home.  For a good portion of the next year.  He's home.  But not all together independent yet.

This past week, after two quiet weeks, we hit a small bump:  CMV virus counts were elevated (think mono).  A different antiviral med was introduced to combat this and we are hoping the numbers will come down.  So far they are still rising, but it's caught early and the meds just started a week ago.  

He is also having significant issues with his blood glucose levels.  Want to know the trigger word for Wil?  Prednisone.  Dreaded, hated, "P" word in our house.  And he's still on it after that little assumed GvHD the last week of his hospital stay.  While the high glucose numbers are the result of the meds and will eventually come down (he was never diabetic before steroids), his new found appetite is SUPER angry he can't chow down on refined carbs.  And after several months of only being able to stomach Easy Mac and Ramen noodles, the man is HANGRY (hungry angry).  We are set to see a diabetes specialist, but honestly I am not sure what good it will do.  I am not a medical professional, but I can read a meal plan and food labels...and I love to cook.  So he has been feasting on some really lovely lean protein and low starch veggies with limited whole grains.  we are doing a great job on his diet and insulin, and the numbers have been cut in half...it's unfortunate that half is still not in the normal range.

So what have I been avoiding?  

November 2014 is a stroll down memory lane of 2013.  November. The month Wil was diagnosed with ALL, the month we rushed him to an ER with neuro impairments and then 3 days later followed a medical transport vehicle, with the contents of my whole heart, to take him to UTSW BMT floor.  The month we announced to everyone that life was suddenly changed, scary, and mostly unknown.  The month he started the chemo regime that left him disabled.

In some ways, last year at this time, we felt great relief.  We finally knew what we were fighting and had a plan for kicking cancer's ass.  We finally had an oncologist we believed in.  We danced in room 815 to Paramore's "Still Into You."  We counted out the days until he'd be done with induction.  We decorated a Star Wars Christmas tree on Thanksgiving in new fleece PJ's.  We held hands, meditated, and prayed.

We were almost blissful.  Because we had no idea what was headed our way the next 11 months.

November 2014, although we are wrapped in hope these days just as often as we are wrapped up in each other's arms under the covers of a bed without rails, is somber for me.  It leads way into December, last year's darkest month...the most tenebrous month of my life.

I think somber is the right word.  Like watching an in-memoriam slideshow of actors during an awards show.  Maybe it's just me, but when I look at those who have passed on, remembering incredible movies and  shows, you think, "wow, what a loss" or "so sad."  Simultaneously however, you smile for the moments the acting took your breath away.  I think that's the place where me and November are right now. And I think it's important work in the grand scheme of this journey.   Honoring, mourning, in tandem.

The Jenny of November 2013...she's gone.  Evaporated along with the tears.  I'm ok though.  I'm in the moment these days by feeling the emotions I don't want to share with all you.  Letting them be as I come into a new me.  I'm so happy Wil is home.  Happy he is building an immune system!  I am, in some ways, working hard at building Jenny too.  So please be patient with me.  

I didn't know what to title this blog...the blog that marks our year anniversary of THE BLOG and all the other milestones I have mentioned thus far in the post.

Side note:  As a college student of the 90's, the musical Rent is still the show I have seen more times than any other musical.  I binge on CD's, meaning I will pull one out and listen to it over and over for several weeks before I have sucked every drop of nostalgia out of it!  This past week I had a hankering for Rent.  So it's all I have listened to for days.  But like so many other relived experiences lately, the meanings have shifted to sometimes deeper perspectives.  Yesterday I broke out in song and tears to half the soundtrack.  While at my core I am so tethered to joy and amazement for this year, it's not been easy.  So many turn arounds...and yet here we stand still going and progress being made.  Last year I had no idea how WE were going to pay OUR rent.  And every time, every month, we were lifted far enough from ruin to pay the bills.  Because of many of you.

I looked back over all the titles to entries.  How can I describe a year in the life of cancer?  Or disaster? Of fear?  Of hope?  Of promise?  

Only one word came to mind:  LOVE.  I think my unconcious was saving this simple word and concept for November.  2014.  The Universe conspired to carry me along again to a place of comfort.

Below are some picture collages of the year, intertwined with lyrics from the song "Seasons of Love" from the musical Rent.  Thank you for hanging in there with us for the last 525,600 minutes.

Much...LOVE.

______________________

SEASONS OF LOVE, Cast of Rent

[You KNOW you want to pull out your CD, Spotify, or YouTube Video and listen along!]

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       Five Hundred Twenty-Five Thousand Moments so Dear...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                                               How Do You Measure - Measure A Year?

"In Daylights - In Sunsets

                                        In Midnights - In Cups of Coffee...

"In Inches - In Miles

                               In Laughter - In Strife...

"In- Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                                          

                    How Do You Measure A Year In The Life?

"How About LOVE?

                                How About LOVE?

                                                               How About LOVE?

"MEASURE IN LOVE...

                                     Seasons of Love....Seasons of Love...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       Five Hundred Twenty-Five Thousand Journey's To Plan...

"Five Hundred Twenty-Five Thousand Six Hundred Minutes...

                       How Do You Measure The Life Of a Woman Or A Man?

"In Truth That She Learned...

                                              Or The Times That He Cried...

"In The Bridges He Burned....

                                              Or The Way That She Died?

"Its Time Now -To Sing Out...

       

                                                Though The Story Never Ends...

"Let's Celebrate...

                             Remember A Year In The Life Of Friends...

"Remember the LOVE....

"Remember the LOVE....

"Remember the LOVE....

"MEASURE IN LOVE....

"OH You Got to You Got To Remember The LOVE...

"You Know That Love Is A Gift From Up Above...

                                 "Share Love...

                                   "Give Love...

                                   "Spread Love...

"Measure, Measure Your Life In...LOVE...

"Seasons Of Love...

                                   Seasons of Love...

"Measure Your Life,

                                       Measure Your Life In...LOVE."

Home

Jenny here.

It's been a few days, but I think tonight's blog post title says it as best and most simply as needed:  Home.  Wil is...home!  

After 79 days since admit, 2 stem cell transplants, a virus, assumed GvHD...after one week ago thinking he would be moved to ICU for a few days...not to mention the combined total 149 days on BMT since November 13, 2013 and 154 days at UTSW St. Paul and 22 days at a SNF...Whew!  Wil is...home.  And for good we hope!

Wil discharged Thursday.  We said our goodbyes to staff that have meant the world to us, who have held us together day after day when we were close to falling apart.  Gosh, there is no place Wil would rather be than home...there is no place I'd rather have him be...but parting from 8th floor was a sweet sorrow indeed.  It makes my heart full to see smiles and tears and to hear a few echo what we feel inside--our commitment is strong, our love is fierce, inspite of this bumpy road.  We had a great marraige all along and B.C.  But there were so many moments of circumstances crushing us into pieces...nights had I not blogged I would have lost from my memory into a sea of blackness...and their help, each one on that floor we called home for so many days...their encouragement, spirit, support, and most of all validation, has been super glue for the soul.  For many other non-medical reasons, we could have not made it to now without them.  BMT is where I was always seen and loved on;  when the outside world felt cold and out of touch, I would breathe a sigh of relief walking on to the unit, a place where I needed no explanations, had to give no updates, and could just be still.  (Those on the outside have played such a special role too, although very different.  There is just something unique about being on a locked unit full of patients, caregivers, and staff who understand the journey forwards and back...and who can nod, smile, or tear, sharing the experience without any words needed).

So it was high-fives and hugs all around as we got ready to leave.  All morning he had been so anxious, but as the time came to leave, he started to say, "I just can't believe it.  I didn't know if it would ever happen.  I'm really going home."  Disbelief.  

Wil didn't have to wait on transport...some of the staff wanted to personally take him down to the car.  As his face hit the fall breeze at the door, his fist went to the sky.  Freedom.  Neither of us cried until we drove away, waved at UTSW St. Paul, a hospital that will soon close and be torn down as the new one opens next month. How do you wrap up, wrap around the idea of a place you spent over 22 weeks of your year being done?  And soon cease to exist?  It's not the building that made the experience, it's the people, and we will look forward to visiting the unit in their new home, when Wil is walking well, feeling well, and getting on with life after cancer.  It's just a strange feeling to ride the elevator down, walk to hall, knowing, grieving, yet hoping, you will never see those walls again.

Re-entry into life is easier said then done.  Wil is still in shock.  Still weak, brain connections slow and interesting some times.  His body has been through so much.  Emotionally I am amazed at how well he has done.  Home is what he has been dreaming of for about 50 days.  Home is also strange.  Life has continued on despite his absence.  While I have not been home a lot myself, I forget I decided to change the placement of the garbage can, hang a new picture, or reorganize the dresser.  I forget that even in my limited time at home I have been there almost every day.  I have no idea what it would feel like to be away for 79 days straight or what it would feel like to suddenly be back.  My life has been interrupted, but not as much as his.

Working in mental health affords me varied perspectives from the interactions I have with clients.  I am struck by how similar some of Wil's statements and reactions are about the last few days to people who have to re-enter life after extended travel, war, or disaster.  His numbness, shock, sadness, fear, helplessness, sleeplessness, vivid dreams, and sometimes lingering scary memories from the past year are real, even with the excitment and happiness that comes with being home.  I guess it makes sense in some part, he has had his own battle and trauma, his own injuries to body, mind, and spirit.  He is resilient.  Yes, he is ready to be home.  But we are definitely in a period of readjustment at our house.  

And for me...life has continued on without him there.  Yes, I saw him nearly every day of his admission, but I had a whole life, as sad and tiring and scary as it sometimes was, outside of the hospital too.  I feel good about being able to hack it on my own.  I have wanted, every step of the way to have my partner back to help out.  It gets hard though as Wil wants to now assess my driving skills, ask about bills, question where I have been taking the cars for service, when I get to bed, if I ate dinner, etc.  And I so want him involved and caring...eventually.  It will take some time on that end too.  I would be lying if I didn't say it is hard for both us.  I am in such caregiver mode most of the day.

Yesterday in clinic we had wonderful news.  Counts were holding strong and some better than they were at discharge!  The results of the sigmoidoscopy were negative for the GI CMV (virus) and everything was normal.  The assumed GvHD was already under control from the steriods.  AND...the DNA blood work revealed that Wil is 95% donor now...no change in blood type yet, but that will be on its way!  No blood transfusions needed, no appointment until next Tuesday!  Despite rising counts, we are reminded that he has a severely compromised immune system.  No immunities anymore to anything.  Brand new and very young.  It will take time to rebuild, but it IS rebuilding!

As Wil high fived his doctor, in true Wil-ness, "think-about-everyone-else," he asked if others in the original trial had had better luck.  Yes, some had engrafted well, but there was one other local failure to graft who was too compromised and died before another transplant.  To say that puts it all in persepective?  Oh yes.  No matter where we are or have come from or how far it feels like we have to go, we know we are blessed and that Wil is my little wonder hubby.  My outlier.  We are ordinary, but oh-so terribly lucky.  As people started posting their daily "thankfulness" lists today, I knew in my heart if I took the challenge I would get very boring because each entry would just say:  "I am thankful for this day and everyone in it."

(Halloween clinic visit with the best treat ever--good news from Dr. V!)

I love him now more than ever, have I said it often enough?  Wil, my sweets, you are my home.  The GPS location of your bed doesn't determine anything but global coordinates.  But it does feel so much better to have my heart's home laying next to me in bed each night.

This year has held infinite splendor.  Life has just continued to dramatically change.  Again.  And again.  My introvert is used to someone being there for him every moment and wants me in his sight at all times.  The extrovert that I am is used to being mostly alone and deeply missing just being a plain old wife.  Now comes the transition when we combine, consolidate, and find new consensus.  This next chapter is just beginning.  Our new life.  

I have no doubt we will come out better than ever.  We somehow learned to acknowledge and celebrate the miracles every chance we have had.  What we know more than ever is that there is no time to wait on some grand finale or goal.  If we had done that we would have missed all the itty bitty brilliancy along the way--the people, the joy learned in the midst of sorrow, the greater connection to the suffering experienced by all people before, during, and after our little blip of an adventure.  I'm really proud that we haven't missed all of that even if, sometimes, the wise Universe has granted us painful do-overs to get the message.  I'm not so concerned about what tomorrow brings right now as long as it's another chance at this crazy wonderful.   

Much love.