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?
"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."
Oh, Jenny. You are such an amazing teacher. I have learned so much from your willingness to rip yourself open in public this past year -- and to show us ALL the love that can come pouring out -- even at those moments when the rest of us are saying "I could never live through that." And you were saying, "I could never live through that." But you did. And Wil did. And now that the ecstasy of the second graft taking is behind you, it's the reality of all you have gained and lost that you're living with. I hear you. Thank you AGAIN for sharing all that you've learned. We have all been blessed by your journey. Here's to the future for you BOTH! :-)
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