The New Normal: Caregiver Guilt

the-new-normal_caregiver-guiltThere are so many layers to caring for a loved one that has an illness or medical issue. I thought I had experienced all of them, figured out and mastered, this role once and for all. It has been five and a half years since Justin’s original diagnosis, in that time he has participated in countless clinical and research trials, went through traditional chemotherapy, and has now spent a year of his life fighting this disease

I thought I was prepared. I thought I had figured out how to deal with the emotional aspect of being the caregiver to someone with cancer. The truth is, I wasn’t dealing with the emotional aspect of my role at all. I was avoiding it.

There is a part of me that shuts down when my husband is gearing up for, going through, or coming down from a treatment process. I become an all-business freight train. Every single thing that happens in my daily life is measured to what Justin is going through, not by him, but by me. I have less patience for nonsense, including my own.

There’s no crying in baseball.

Sometimes being a caregiver means you don’t get the time to deal with your own emotions, because, let’s face it, it’s easier not to. We all know it’s not healthy to ignore your own emotional and physical needs, but I’m here to tell you, as someone who avoided dealing with my own emotional well-being, it catches up to you.

There is this heavy guilt that comes along with taking time for yourself when you are also caring for someone else. It seems selfish to stop, to yell, to cry, to be still – there are so many other things that you could be doing – that you should be doing.

But just like the Delta Flight Attendants tell you: “Put your oxygen mask on first before assisting other passengers.”

Easier said than done.

Going into Justin’s admission I knew that I would stay the first night with him at the hospital but would head home the following night to spend some time with Bruno, our cats, and just get a good night’s sleep in our bed. As soon as, and I’m talking the minute, we walked onto the BMT unit the guilt set in. It was a pit in my stomach, a swarm of butterflies, all erupting at the thought of leaving him here to go back home the following night. The swarming caused this kneejerk reactionary crying that was unstoppable. I tried to hide it, to just swallow it and be present. It didn’t work.

I spent a good portion of our first night in the hospital and most definitely the second day crying about leaving Justin to go home. I asked him repeatedly if he would be okay on his own, knowing that he would say yes, and most likely needed me to get away from him for a few hours. He always said yes. Always.

As the hours ticked by the guilt was crushing me. How could I leave him here? Why am I reacting like this? Why am I not stronger about this? I felt so incredibly sad about him being in the room alone, and me in the car driving away from the hospital.

It’s strange being in the hospital for an extended amount of time. You lose your bearings and grasp on the real world, you forget about everything outside, the hospital campus, the hospital itself, and ultimately live life on a single floor. You forget what is going on around you. The realization of what’s going on out there while you’re stuck inside is paralyzing and overwhelming. I didn’t want to become part of the outside world while Justin was still stuck inside.

After several text message exchanges with my mother, a good friend, and conversations with Justin, I packed up my things for the night. I procrastinated on actually standing up to walk out the door. Started random conversations, putzed around on my phone, smiled at Justin with tears in my eyes. I was a mess.

Finally, I got up the courage to just go. I kissed Justin goodbye, asked him one final time if he would be alright and made him promise to call me, text me, and Facetime me. The waterworks started, he laughed at me, and pushed me out the door. I managed to make it to the car without having a nervous breakdown, drove the 20 miles back home, pulled into the garage, walked into the house, greeted my puppy, and collapsed on the bed crying uncontrollably. Bruno licked my face, laid down next to me, and once I felt like I had sufficiently gotten my emotions out, I set out to make some dinner and get ready for bed.

It wasn’t until the next morning, after getting a full eight hours of sleep, having the luxury of making my own coffee and breakfast, and being able to spend a few hours at home better preparing for my next trip to the unit, that I realized just how necessary that time was. I felt so much more refreshed and prepared to spend another night at the hospital. You see, I wasn’t doing anyone any favors by feeling guilty about needing to take time to recharge. I was nothing but a crying mess for 36 hours, and I’ll tell you what: crying messes are not useful in the bone marrow transplant unit.

I learned a valuable lesson with this new chapter over the weekend: taking care of yourself is imperative, and giving into the guilt is not an option. No one can be “on” all the time, it’s not a realistic expectation and chances are, no one expects you to fill quota anyway. Take time, be still, breath, recharge, and go back in the ring.

Competing Priorities

It has been a while. I hadn’t realized how long, I kept assuming it had only been a week. It’s been two. 

I have been stuck in this swirling headspace of wanting to do more. Wanting to redefine the brand of this blog, wanting to build my graphic design work, and find a way to meld all of the things that I want to do into a single mission. After spending the last two weeks thinking, brainstorming, planning, and doing research, I have determined the only thing I need is an endless bank account and a new laptop. No big deal. 

This discovery has left me feeling a little defeated, so I remained in my swirling head space, not really accomplishing anything, dreaming of how it COULD be. 

I had fully intended to go into last week thinking positively and like I could accomplish my goals. Then, on Monday morning, I went to my first doctor appointment in eight years. In eight years I had not gone to have an annual exam, and it wasn’t until I started noticing issues that I decided to go, despite the begging, pleading, and yelling of my closest friends and family. I went to a new doctor, in an office I had never been in before. I was nervous, not because I thought something awful was wrong with me, but because I had no idea what to expect. I answered the questions, told my eight year story, and went through the expected exam. My doctor wanted more information. She added 3 more items to my itinerary: an ultrasound, endometrial biopsy, and blood work. Previously, the most invasive procedure I’ve ever had while in a doctors office had been getting a vaccine or giving a urine sample.  The biopsy hit me like a ton of bricks, it was not what I had been expecting. 

“All signs are leading to polycystic ovarian syndrome. Do you know what that is?”  

No, I didn’t. She explained, but I wasn’t really following the details. Hormones, cysts, ovaries, acne, anxiety/depression, meds, low carb diet…

I got the gist, I had a hormonal imbalance that could be causing cysts to grow on my ovaries, effecting my cycle and instigating a series of side effects. I could go on medication immediately or try a low-carb diet to see if an impact can be made. I chose the latter. 

I left the office feeling overwhelmed, distracted, and in pain. Not exactly what I had been expecting. Throughout the day I talked with my friends, Justin, my Mom, sister, and aunt. Everyone was supportive, ready to help me push through the initial lifestyle change toward a new low-carb diet. The rest of the week was difficult, but with a ton of research, I found some strategies for eating within this new framework. It’s been hard, but there’s something about making this shift because you HAVE to compared to just wanting to make a change. Motivation can waver. Medical needs, typically, don’t. 

In a week that I thought I would be moving forward on my business and career goals, I had to shift my focus to my personal health. So, I stayed quiet. I wasn’t active on social media, I didn’t blog, I didn’t get out my big idea notebook, I went grocery shopping, I tracked food, tried new recipes, and created a framework for how this need can fit into our life. 

I’m not one to usually believe that “everything happens for a reason” but I’ll tell you what, I’m sure seeing connections between the events that lead me to the doctors office and what I know I needed: to focus on my own physical health. I refused to make it a priority in my life, but apparently life had a different plan. 

Saturday Traditions & Lazy Sundays

EJFP ChaptersIt’s a rainy Sunday here in Metro-Detroit. A gray, calm, quiet Sunday. This weather makes me feel cozy and happy. It’s a time to just sit back and relax, to not worry about a growing to-do list, to enjoy and recharge.

Yesterday was a more productive day, a little more active than usual. After spending the morning watching Netflix with Justin on the couch, I decided to make a menu for dinner with my parents. Usually, we make the quarter-mile trek to their house, for whatever meal my mother has chosen that weekend, but when she texted to see if we were coming over I decided to instead extend the invite for them to come our way. She seemed excited to not have to think about dinner for the day, and I was excited to get creative myself.

I spent some time on Pinterest, thinking of things to make. While brewing my second cup of coffee, I looked at the Detroit Red Wings game schedule on our fridge and suddenly I felt inspired. Hockey Snacks! A tradition in our family that occurs several times each winter, a variety of appetizer type of foods sprawled out on the coffee table in the living room while we watch a hockey game together. It’s one of my favorite family traditions. I had never been behind the scenes for a hockey snack dinner, so I was pumped to take it on. I searched for over an hour to assemble my menu and grocery list.

I came home from my pilgrimage to Kroger to a clean house. Justin had spent the hour making sure the house was clean and presentable for my parents to arrive in a few hours. All I had to worry about was the menu. I started with dessert and worked my way backwards through the list of appetizers. Making up my own rules as I went. Three hours later I was 3 episodes of One Tree Hill deep, out of counter space, and my parents were walking through the front door. I went non-stop for over three hours and was baffled by how much organization it took to pull it off, but it was all done: Taco Pie Rolls, Meatball Bombs, Baked Potato Slices, Mini Italian Subs, Banana Bread Muffins, and Mini Apple Pies. I was impressed with myself. I still am, quite frankly. I gave my mom props for pulling this off several times during the hockey season, it’s quite a feat!

We spent our evening snacking, watching hockey, chatting, playing with Bruno, and relaxing. I was very grateful to have the ability to host my parents so my mom could have a day off. I even sent them home with leftovers so Dad had Sunday dinner. I went to bed shortly after they left, exhausted but happy.

So, for today, I am grateful for this gray Sunday. I spent my morning tracking my friend who was running the Detroit Free Press Half Marathon, watching Sunday Today and Meet the Press, sipping on coffee, and snuggling with my puppy. I have my laundry going, a clean kitchen, and full fridge as I continue along my lazy Sunday path. Go ahead and rain, Mother Nature, I’m loving it!

The New Normal: Five Years Later

EJFP ChaptersYesterday was five years since Justin’s original diagnosis of lymphoma. Five years. 1,825 days. It seems crazy to think about what has happened since August 10, 2011. I remember that day, vividly. We woke up from our sixth overnight in the hospital. Justin was two days post-op for his mysterious artery entrapment syndrome. My parents had cut their vacation short to come home to help me take care of things while Justin was in the hospital. I was focused on getting home. We were happy because we knew it was Justin’s release date, but irritable through the hours of waiting to walk out the door.

The medical assistant finally arrived, he was one of our favorites. There was one final scan Justin needed to do before they literally pushed him out the door. I wish I could remember his name. As he was getting Justin ready to take downstairs for his final test a young doctor walked in. He was the hematologist that had been referred to us after they discovered the enlarged lymph node in Justin’s abdomen. A biopsy was just a precaution.

“Justin is thin and I’m sure his lymph node just LOOKS bigger on a scan.”

I honestly hadn’t even thought about the biopsy results, no one made it seem like a big deal. Our focus was his leg and rehabilitation toward walking again. But here he was, this doctor I can’t describe as anything other than an awkward hipster looking man that looked no older than I was at the time. I was 27.

“So I’ve spoken with the lab and it looks like we have an “unofficial” diagnosis of non-hodgkin’s follicular lymphoma. It’s not confirmed yet, but that’s what it looks like. This is what we consider a watch and wait situation so my office will call you in October to set up an appointment.”

He handed me a stack of papers that looked like they had been printed from the internet. I looked down and the third word on the page was “cancer”.

“Do you have any questions?”

I was dumbfounded. Frozen. This can’t be real life. I looked up at him from my little make-shift bed and smiled, with panic in my voice I said “um…I….well…no, I guess not”

“Okay, well if you think of anything let me know. Good luck with physical therapy.”

And he was gone. Never to be seen or heard from again.

The medical assistant continued to help Justin transition to the wheelchair to take him to his final test. Realizing he was still in the room, I looked up at him and took in the look of shock on his face. He was just as shocked as I was. We made eye contact for a moment and he snapped out of it. This man that I can’t remember the name of witnessed one of the biggest moments of our lives. The moment that everything changed and I can’t remember his name. I think of him every once and awhile. I wonder how he is and if he thinks about that moment too.

That was the day that I learned to hold in my emotions and control my tears. To think through things and hold off on exploding until I was in an appropriate space. It was the first time I understood what people meant when they said they felt “numb”. It’s a very accurate description. I was numb, tackling what I could, one day at a time.

August 10, 2011 was a lifetime ago. I am a completely different person than I was when I woke up that morning. I have watched Justin go through two additional occurrences of lymphoma since then. Five treatment plans. Two anaphylactic reactions. Countless blood tests and CT scans. Hours of of sitting in waiting rooms. Days, Weeks, Months of being numb in order to make it through the day. Thawing in the comfort of people that are trusted and allow you to melt just long enough to relax and move forward. One day at a time.

Somewhere along the process of getting through Justin’s original diagnosis, I started this blog. It took some time, but eventually I wrote The Last Normal Day. The story of everything leading up to our first night in the hospital. I was so exhausted that I never really finished the story. I wrote The Last Normal Day Part Two but I was so sick of telling the story at that point that I couldn’t form the words. Five years later, I found a way to form the words. I thawed a little bit this morning writing this. It felt good and was much needed.

Thank you for letting me share my story.

Throwback Thursday: The Corner Office

I have been writing, in some form, for most of my life. Whether it be in an actual notebook or out in cyberspace, I have always found comfort in taking thoughts and putting them into place on a page. Until recently, I haven’t used any particular method with much consistency. I have countless half filled notebooks that were to serve as daily journals, and spent four years sporadically writing on this blog. Since I have taken the time to make writing a daily part of my life I have felt so much more connected to the world and as if I have this creative outlet, just for me. I can’t lie, seeing the readership and community around The Corner Office increase has be so incredibly amazing. On a daily basis I am shocked by the number of people reading, liking, commenting, and sharing. It’s rather humbling.

Three years ago, when I transitioned the blog “Still Standing” to “The Corner Office” I had no idea where it would take me. I was inspired by my little office space that I created in our new home. It was the first time since I had left my parents house that I had a space to call my own. I felt so grown up. Around the same time as our move, I received a promotion at work and with that came my own office. I now had two spaces that were mine to create in, to think, be productive, and keep moving forward. It seemed only natural that my online creative space mirrored the now two spaces that I got to call my own.

We are throwing it back to August of 2013 today, almost 3 years later, to the post where I introduced everyone to The Corner Office.

EJFP Chapters: Real World Meets Fictional World

EJFP ChaptersTraveling has never been a huge part of my life, especially if it included leaving the state of Michigan. As a kid, I remember taking two trips outside of Michigan as a family, once to Disney World and once to Missouri for my dad’s dream vacation: a week on a houseboat. It seems that I have traveled more as an adult outside of my little Michigan comfort zone, one trip was a little more out of the ordinary than the others.

(May 2011) Shortly after I got married and my sister moved back home my mom decided that she wanted to take the two of us on a trip, considering we didn’t travel much and mom hadn’t been on an airplane in almost 18 years, I was surprised when she said she was taking us to Myrtle Beach, South Carolina. Mom and Laura did most of the planning, I helped with the more logistical stuff, and before we knew it, May had arrived and it was time for us to fly south!

Having not been on an airplane in so long, my mom did not have an exceptionally great time on our flights. By the time we landed we were all ready to kiss the ground below us. The feeling of walking out of the doors of the airport was so strange to me, the exhaustion from a day of traveling, the blast of humidity and heat, and the anticipation of getting to your destination. It’s a odd thing to be dropped off hundreds of miles away from where you started, completely vulnerable and relying on those around you for directions.

myrtle beach

Our hotel was very nice, the view was pretty amazing, the boardwalk kept going as far as the eye could see on either side of our balcony. The streets were filled with motorcycles for Black Biker Week, all night long you could hear the revving of bikes making their way along the main drag. We settled in, and got ready for five days of relaxing by the ocean.

Our first morning arrived and all I could think about was waking up and heading downstairs to the Starbucks on the main floor of the hotel. Coffee by the ocean just seems like the perfect wake up call. Probably one of the best views I’ve had while sitting at a coffee shop, the air was still cool, the boardwalk was empty and I sat there sipping my delicious coffee just taking in the breeze.

I spent the majority of my time lounging and reading on my new Kindle. It’s amazing how many books you can read when you’ve got an endless internet connection. We packed our days with visiting shops, trying new restaurants, laying on beach chairs, and just enjoying some time to pause. Laura and Mom are much more into the tourist aspect of traveling than I am, they undoubtedly saw much more of the city than I had. By the time our last couple of days came, we were just about spent with everything within a mile radius of our hotel. On the eve of our last full day, we decided to create some spontaneity in our vacation.

Wilmington, North Carolina was only a couple of hours away and the home of our favorite TV show, One Tree Hill. We headed back toward the airport to rent a car and hit the road! I had done research the night before and had a list of filming locations we were going to search for. My favorite, by far, was the Rivercourt on the Cape Fear River. Home to many scenes and characters that we had grown to love. We enjoyed a guided tour of the sound stage they filmed on and even got to walk through some of the sets for the show, I felt like I was in another universe. If only I had photographic evidence of that experience!

The next day we packed up and headed back to the real world, literally after spending a day in our favorite fictional world. We stepped off of our fourth plane in six days and we were back home, that feeling is a little different than when you land somewhere new, but it never fails, everything always feels a little different after returning from a trip away. The world just keeps on spinning while you’re off experiencing a new landscape.

This trip was one that sparked a series of trips that we take together, sometimes including other people, sometimes it’s just the three of us exploring new territory. I look forward to these little breaks from reality that we get, they are opportunities to just exist in a new space, away from the stress that life can bring with people you know will build you up.

I may not be one that likes to travel, the lack of control is a problem for me, but I do like to relax, explore, and soak in all of the time I can with the people that I care about. This summer will bring three breaks from reality and I’m already jonesing to get in the car and drive.