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Navigating the Middle

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Best Christmas EVER!

It’s New Year’s Eve, and I can’t help but look back at the year and happily wave ~ “b-bye.” As you can imagine, there’s no love lost between me and 2016. January began with a biopsy that confirmed the Non-Hodgkin’s Lymphoma had returned and was followed by twice-weekly chemo over the next five months. July 26 I entered the Allo Transplant Unit and two weeks later I wheeled out so fast I completely forgot to don the required face mask.

September and October meant numerous trips to and from the hospital each week for blood work, transfusions, infusions, imaging and routine checks. Fortunately by November, the time between visits had lengthened. I got my flu shot and a pneumonia vaccine, which gave me a bit more confidence to venture out. So by the time December rolled around, I began negotiating with providers concerning what I could do/what I couldn’t do in the future. It was really hard to hear that it would be a full year post-transplant (August 2017) before I would have my doctor’s clearance to resume life, in other words, my new normal.

By any stretch of the imagination, 2016 was definitely not the year of Dee. But there was a light near the end of my tunnel. Christmas was fast approaching, and I wanted, I needed the family to make new memories to replace the old ones. But with our eldest flying to the West Coast on the 27th and public school closing the afternoon of the 23rd, we had little time for all the plans I’d made. I had to get creative. We crammed days of activities into one: seeing a movie; having lunch; and gathering around the kitchen island to make peppermint bark; bake Chex Mix ; and simmer “real hot cocoa. It tasted and smelled like Christmas.

But this was the Best Christmas EVER!

You know – that Christmas when you tear open a box to reveal the perfect present that you asked for, but didn’t know just how much you wanted it UNTIL you finally got it. Remember Ralphy in “A Christmas Story?” Magical, like THAT, but at an age when you don’t think you’ll ever experience another magical holiday. Your kids are teenagers; you’ve witnessed another season of commercial crap; and almost nobody says “Merry Christmas.” It may look like Christmas, but it doesn’t feel like it inside.

Until the unimaginable happened.

The kind of thing that takes a nano-second for your brain to catch up with what your eyes have just seen – and one of them has GOT to be lying! Because when I looked up, it didn’t immediately register that my mother and my sister were both standing in my family room, having flown in from Houston to surprise me on Christmas Eve.

Did I mention this was the Best Christmas EVER??!! No gift, no amount of money could have produced the joy I felt during the 48 hours of their visit. Apparently I’d been asking my sister for a Christmas visit for the past several months. I just hadn’t realized it.

Sometimes, we get exactly what we want for Christmas before knowing how much we want it. Sometimes the year doesn’t end as bleakly as it began.

Thank God!! and Happy New Year!

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Today is a Day Forward

My sister Stephanie got it right when she mused, “When you’ve undergone a major surgery or something like you’ve just experienced, it’s good to remember that recovery is like taking two steps forward and one step back.”

Before hearing her words, I hadn’t stopped to consider that I’d feel okay one day, and kinda lousy, tired or both the next. The passage to recovery is a suffocating struggle against waters so deep, at times my feet don’t touch the bottom; at other times, I’m buoyed by the current. I can imagine where I’d like to surface, but the way up is unclear.

At times like this, it’s important that I talk to myself,
to remind myself of all the progress I’ve made in just over two weeks of being at home. So here goes:

  1. I’m eating so much better now that I can choose what I eat and it isn’t being prepared in a prison galley.
  2. It no longer hurts to swallow pills, which is a good thing. I usually have to swallow at least 12 pills/day.
  3. I can walk around without shoes, a real joy for me since I love being barefoot. (There was no way I’d allow my skin to come in contact with a hospital room floor.)
  4. I have better cable at home. Even HGTV gets old when you don’t want to Love It or List It, Flip It, or Fixit Up.
  5. My world has expanded from a mere hospital room with a bathroom. I have an entire house to move about. Although out of safety precautions, I choose to stay out of the boys’ bedrooms.
  6. No one wakes me in the middle of the night…unless it’s my bladder.
  7. My hair has finally stopped falling out. It hasn’t started to grow back yet, but I don’t have to worry about going to sleep with a regular pillow and waking up to a pillow case disguised as Chewbacca.

chewiepillowBut the very best part of being home is spending my days and nights with family. Because even the worse day at home is better than an afternoon on the BMT Unit.

 

 

 

Day +9: Just Beyond Ordinary

I began this blog three days ago, when I felt well enough to write. Unfortunately chemo-brain is real. And the lack of sleep, nausea and pain don’t fuel the creative process.

I could tell you all about my burning feet and palms, diarrhea, and trouble swallowing food. I could tell you it’s not pretty; in fact, it’s ugly. Or I could chose to focus on being thankful. Extended family, church family, friends, and neighbors have all stepped up to take care of me and my family. Jeff, my girlfriend Kelly, my sister Stephanie and my mom have all taken turns playing nurse and spending nights in the hospital. I call it a slumber party, which when I get my way, is mostly slumber.

I’ve even sparked a social life. My neighbors, T. – whom I fondly refer to as my twin (having received our transplants on the same day); and D. – who received her new cells Wednesday are both from the Maryland-Virginia area, have children, and had related donors. It’s good having them around. I would not want to do this alone.

Yet deep down, I’m somewhat envious of them. I cannot help wonder if having a related donor makes a difference. Unfortunately it was not a real option for me. I can only stress that the path to recovery following a stem cell transplant is no sprint. No cancer journey ever is. My marathon is more like a blinding race through an ever-changing topography that can create a ripple of panic through the spine of my medical team. Anything just beyond ordinary seems to solicit a need for more tests. The test du jour is a CT scan of my abdomen, which I have politely declined…at least for the time being.

Today, I will determine what’s ordinary and what isn’t.

Days +1, +2: Forever Changed

It’s been a few days since I’ve had the strength (or desire) to write. My hopes to blog throughout this process were outrageously, overly inflated. Words like “goal” and “will-power” simply possessed no power.

Here’s the recap:

Wednesday, August 3 was Day 0. The stem cells arrived, carried in a cooler by medical personnel.

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After checking paperwork and confirming the puffy, pallid-looking patient laying in front of them matched the proper name, date of birth, and medical record number…

 

…the donor cells were hung. Gravity stood between me and my new stem cells. Jeff and I prayed. The nurse stayed. The bag emptied in about 20 minutes.

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There was no reaction; no gagging or fits. It was, as it had been described to me, rather anti-climactic. I felt well enough to get out of bed and take a couple of laps around the ward that evening.

That was Wednesday, Day 0.

Since then, things haven’t gone nearly so well. BUT, today is Day +2, and I am able to write. Prayerfully, this is the turnaround I’ve been anticipating. Doctors have assured me that my symptoms are a result of the preconditioning regiment, of which they do not seem to be surprised.

I, on the other hand, have experienced many surprises. Given my history of cancer, chemo and radiation, I’d thought I’d seen it all. But this IS different. And more than anything, I am convinced that no matter what happens next or what has already taken place, my life has forever changed.

 

 

The Social Comparison of New Year’s Eve

I awoke early this morning, intent on doing two things: read my bible and check my Facebook news feed. Believe me, those two tasks don’t usually go together, but I was eager to see how our friends and family rang in the New Year. I willingly risked the “Facebook depression, low self-esteem and bitter jealousy” that (reportedly) comes from “social comparison.” You might not know it by that name, but it’s when we look at people’s Facebook posts (i.e., a BEST OF reel) and then compare it to our boring, ordinary lives. (Guess it’s a good thing I read my bible first!)

I eagerly scanned my news feed to answer the Who? Where? and How? questions of New Year’s Eve.

From fishing to fireworks, you marked the passing of the old into the new wearing everything from party dresses and dinner jackets to jeans and pajamas. Paper top hats, blinged-out tiaras and confetti covered your heads while balloons covered the walls, floors and ceilings. You raised Champagne flutes, beer cans and noise makers high overhead, or you sank into a comfy couch with bowls of popcorn.  You celebrated abroad and close to home, really close to home…like AT HOME.

Whatever you chose to do last night, you did it in the company of that special someone, your kids, extended family, church members, friends, neighbors, college roommates and frat brothers. I saw you surrounded by LOVE, even if you chose to be alone because you love yourself enough to give/receive the gift of self-reflection.

“Social Comparison?”Maybe a little, but I’m neither depressed, experiencing low self-esteem or bitter jealousy. I only see the love.

HAPPY NEW YEAR loved ones!

Weird Parenting

My sister got on my case the other night when I told her that I wouldn’t be joining her in DC for our annual girls’ weekend. Her expectations were not unwarranted. We try to take a sister-trip every year, one that usually revolves around her work as an insurance agent. However, due to serious illnesses on both our parts, we’d missed the last two years. Suffice it to say, I was really looking forward to our time together. But you know what they say about best laid plans.

After quickly mentioning that her conference would be in DC this year (while downsizing her home; running a business; and being a single parent), details from my sister dried up. It wasn’t until she literally forwarded her hotel confirmation email, that I noticed the dates: dueling schedules which meant that I would be on the West Coast, dropping my Number 1 son at college, during Stephanie’s visit to our area. While I hate to miss out on the late night talks, socializing, and enjoying one too many glasses of wine together, this could be one of the last mother-son activities that Chris and I will ever share. EVER may seem like a really strong word here, but he’s moving on. I’m the one who’s being left behind, along with his dad and two younger brothers.

I remember being his age, barely able to contain my excitement over leaving home to pursue my new, grown-up life. Back then, I didn’t know there was a difference between becoming an adult and being a grown-up. And being a grown-up means you make grown-up decisions, like committing to seeing your firstborn through his transition to college, even if he is 18.

Since Stephanie also has a teenaged son, I knew she was kidding when she teased, “I can’t believe you’re chosing to take your kid to college instead of seeing me! What kind of WEIRD PARENTING is that? Just because he’s going to school in another country…”

I might not have been a semi-finalist in the NGB (okay, that’s not really a thing), National Geographic Bee, but I am certain that Seattle is in the U.S; I told her so.

But Stephanie just responded, “Um. It may as well be another country.” (Spoken like a true Texan.) She had a point. For about the same distance, (give or take 80 miles and a student visa) he might as well be going to school in Ecuador! And that’s on another continent and below the equator!! THANKS SIS! I hadn’t considered any of this before talking to you. I feel much better now.

I also finally understand why some moms delivered the cartoon-eye-popping-stare when I told them that Chris would be leaving our mid-Atlantic home for the Pacific Northwest. “You’re going to let him go that far away? Could he go any farther away?” were the two most commonly asked questions, followed by: “Aren’t you going to miss him?”

Well, yeah…to all inquiries. (1) He was allowed to apply to any university, provided he was able to secure scholarship money, which he did; (2) He could have gone farther away…like Ecuador (see previous paragraph); and (3) You’d miss your child if he went away to school, regardless of the distance.

Perhaps that was the point some of my friends were trying to make. They couldn’t fathom the thought of having their college kid so far from home. I get it. But we are the parents who attended college across the country (Jeff) and who moved to Hawaii after graduate school (me). In our WEIRD PARENTING world, our son moving 2,300+ miles away seems like a natural choice.

Besides, I am confident that we have done a good job raising him. He will make mistakes, just like we did. And he will figure things out; he’s a smart kid. After all, we trusted him enough to fly across the country (without us) for college tours. I look forward to visiting his campus for the first time when I deliver him there later next month. (WEIRD PARENTING, right?)

And while I might not feel the need to squeeze out every living, breathing moment with him before he takes off, I do want to enjoy this rite of passage before he pushes me out to make room for his new life. He’s a teenager, so the pushing is well underway. Like labor, it’s painful but hopefully seeing your beautiful baby boy turn into a caring, responsible, kind and productive man helps erase the pain.

So as much as I love spending time with my sister, and I really do, I won’t be able to join her this year. I’ve got more WEIRD PARENTING to do.

The Who & The Why

Day 1 and I feel like I’ve been here before – asked to write about “who I am and why I’m here.” In the grand scheme of things, I should answer the second question first. I am here because I believe that everyone has a story. That story matters because what people really want, what we ALL really want, is to feel validated. We want to know that we matter.

…which leads me to answer the first question.

I’m a woman with a desire to share life’s journey as a wife and mom, believer, cancer survivor, warrior, conqueror. I have already managed to capture some BIGGIES in my blog “Losing a Lifelong Friend.” Now I’m ready to tackle the challenges staring me squarely in the face: menopause, fading beauty, a college kid, aging parents and whatever else is hurling toward my head at warp speed.

In short, I’m getting ready for the second half. My Grandma Katie will turn 106 this year. So according to my calculations, I’m just getting started. Join me.

Home Stretch…Cycle 6: Day 4

Yesterday was Easter Sunday. It was also Day 3 of Cycle 6, which means I am nearing the end of the chemo part of my journey. Realizing this should have brought me great joy, but in truth, Day 3 is always the hardest for me. It is the day when I have to reach deep within to steady myself for chemo.

Day 3 is my saddest day.

I was trying to distract myself with Facebook when I came across a post about a college sorority sister who had succumbed to cancer. Her birthday was April 5th and her date with eternity was April 6th, Easter. I called up my pledge sister to reflect on Stacie’s four-year battle. When we said “good-bye” my soror left me with the image of Jesus raising from the tomb, taking Stacie’s hand in His own, and ushering her into eternity with Him.

It was a profoundly beautiful and comforting image, one that made me appreciate that not everyone gets a Day 3. Perhaps I should be grateful for mine…as I am grateful to all of you.

Cycle 4: The Climb Up the Mountain

Today is the official start of chemo, cycle 4. Arriving at this point, has been emotionally challenging. Not everyday, just the ones that were snow-covered, requiring trips to the clinic or doctor’s office, that left me feeling like, “This next round will not be okay.”

But 10+ hours into my treatment, I am doing well, just EXTREMELY fatigued. Each footstep up the stairs to my bedroom leaves impressions like footholds up a mountain, my mountain. As I began to consider how I will slay this beast, I open my Facebook page to read the words of Sharon, a dear friend.

Uncertainty in any season is difficult. The mountain looms high in order to meet its opponent. In my estimation, the greater the opponent the more challenging the climb. The warrior is often BOTH fearless and afraid, tough and gentle, confident and unsure. Our mountains are littered with obstacles that in time teach us, and strengthen us even in our difficult seasons. Because you are blazing the trail, you cannot know each turn but trust the finish is there, waiting for you to cross, to plant your flag, to show all of us the goodness of God. Your victory is claimed, this “climb” is not given to the swift nor the strong but to YOU who will endure. And while you can know you will endure in the end it does not soften the terrain of your climb. Just know you have so many who here to lift you up when you are feeling down and literally remind you as much as you need that the crest is awaiting you, so rest for a minute and then get back up and keep climbing girl! We need you. We love you. 

Tonight, my mountain doesn’t loom so large. It remains in place, shrowded in clouds, but there are stairs to help me find my way.

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