One Day at a Time

One Day at a TimeFor the first time in almost three months I am sitting down at my computer with the intention to write. I took a break to regroup, refocus, and really, to just breath. I was certain I would come back in a week and pick up where I left off, it seemed as I got more encouragement and praise that I had more to say, until I had nothing to say.

I’ve thought about writing a lot, thought about jumping on my computer and telling more of my story and each time I thought about it, I felt weighed down by the idea. My day to day life was too heavy and I couldn’t comprehend using my brain for anything other than binging on Netflix.

Being a caregiver of someone recovering from a bone marrow transplant is so much different than I had anticipated. I assumed it would be similar to being the caregiver of someone going through chemotherapy or radiation: difficult, frustrating, scary, but ultimately, bearable. A bone marrow transplant is, quite literally, a whole different beast. My can-do attitude and desire to take care of everything were irrelevant and those exact things sent me deeper into a space I didn’t know how to navigate.

Anxiety, depression, trauma, grief, catastrophizing, anger, loneliness, guilt: all of the words that have been brought up in my sessions with my therapist since Justin has come home. I had the hardest time understanding that I was grieving, mostly for the life that we had once considered “normal”. There was a new, unpredictable, normal that I couldn’t get a grasp on and it threw me for a loop.

I wish I could describe it to you, I wish I had words of wisdom for you, I wish there was something I could do to keep anyone else from ever feeling the way that I have over the last five months, but as I am learning, I have no control. At all. How disappointing.

I spent many days wondering how I would start writing again. How would I come back? Do I take a deep dive into my experiences over the last few months? Do I just skip over it and talk about all of the things that have gotten me through? Do I just pretend the three months never happened at all? What is the best way to try and regain some of your “normal”? I was apprehensive and insecure. So, here I am, unpolished, raw, and still trying to figure it all out. I suppose that’s all I can ask for at this point.

My world was flipped upside down and I’m still trying to get everything off of the ceiling. It will take some time, and every once and a while something will float back up, but progress is being made on both fronts: Justin’s health and my mental health. For now, we’re just taking it one day at a time.

The New Normal, Again.

ruleI have been a out of commission lately. Upon Justin’s discharge from the hospital my role as his caregiver increased significantly before he was admitted back into the hospital through the ER late Sunday evening. To say the last week has been overwhelming and a rollercoaster of emotions would be an understatement. To read about how Justin’s doing, feel free to check out my latest update on Project: Transplant.

I learned a lesson in self-care this week. For weeks I have had people ask me: “Are you taking care of yourself?” – with rolled eyes, I said “yes, of course.” I felt fine, a little overwhelmed at times and tired, but I was okay. Coming home from the hospital was a shock to my system. I was excited, my husband was finally coming home after 21 straight days in the hospital, our puppy would finally have his human back, and I could finally take a breather from my constant commute back and forth.

No sooner did we walk in the door of our house did I realize how wrong I was. Being home, while slightly comforting, was completely overwhelming. There was no medical team, no routine, no doctors walking the halls – it was just me, a bag full of medications, some instructions, and our animals. What the hell had we gotten ourselves into?

Having not arrived home until after 9pm, we were both exhausted and decided that going to bed was probably the best choice for both of us. After a crappy night’s sleep our first official day home had started. Justin wasn’t feeling well, but pushed through, even showering before falling back asleep. The visiting nurse came by to show me how to operate his IV pump, clean his port lumens (lines), and take his vitals. So. Much. Information. Just thinking about disconnecting his IV, by myself, at midnight when his drip would be done gave me a whole new level of anxiety. Trying to hold it together, I found myself sitting in the garage, crying to my mom on the phone. I felt unprepared and inadequate to do all of this. I went to bed that night exhausted, but ready to do my part with disconnecting his IV meds. And, quite frankly, I kicked ass. I was quick, confident, and precise as I cleaned, flushed, and heparinized his lumen in under 10 minutes so he could get back to sleep.

Despite my midnight confidence it took less than half a day at home for both of us to feel overwhelmed. We made the best of it, but we knew we had a lot to figure out. By Sunday afternoon, as we were catching our groove, Justin spiked a fever of 100.8, warranting a call to the BMT unit. After being directed to go to the ER for admission, I packed up some of our things and felt a twinge of relief mixed with anxiety. It was scary that we had to head back so soon, but comforting to know he would soon be back in the BMT unit with his medical team. I made the decision, from the ER room, to take the week off of work. I had been working remotely while Justin was in the hospital, but just couldn’t find it in my power to focus on anything but what was right in front of us. It felt like a small self-care win.

I spent the night with Justin both Sunday and Monday, only going home briefly to shower and grab some additional things. When Tuesday morning came I felt panicky, I had a stomach ache, was convinced I had a urinary tract infection, was exhausted, and couldn’t do anything for my husband to help him recover. I was dreading talking to his doctor, assuming that my physical symptoms would mean they wouldn’t allow me to stay with him. I couldn’t stand the thought of being kept away right now. His doctor walked in the room, gave us an update and asked if we had any questions. Justin pointed at me and said “She doesn’t feel good.” I started bawling. She convinced me to go home, see a doctor, and get some rest. I did exactly as she said.

After lunch with my mom, seeing a doctor, doing a quick shopping trip, and picking up an antibiotic for myself, I was home. I sat in the sunroom with the windows open, ate dinner, and just took a breather. Around 6:30pm I shut the house up for the night and went into the bedroom, I was asleep within 20 minutes. Despite the felines waking me up a few times I slept until 8:30am on Wednesday morning, I couldn’t believe it. 13 hours of sleep in one night and I was convinced I could keep going. I forced myself out of bed, made some breakfast, took a shower, and prepared enough food to keep me satisfied for a couple of days at the hospital – something I had never taken the time to do before. I felt ready to get back to Justin.

I had convinced myself, over the last month, that I had been taking care of myself. I didn’t feel any more exhausted than I should, I made excuses for all of the signs of burn out I was experiencing. Of course I felt like this – my husband just had a bone marrow transplant.

That is no excuse. I didn’t adjust my self-care plan based on our new day to day life. I wasn’t increasing my water intake to compensate for the dryness of the hospital, I wasn’t being proactive with my food preparations because it was easier not to, I wasn’t napping when Justin was because I thought that was my time to “get things done”, I was lying to myself and to everyone else about my self-care and right when my role changed, it bottomed out on me. I had to, yet again, create a new normal. One that was focused on our physical and mental health FIRST. Everything else can wait for us.

 

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.

Project: Transplant

Yesterday I released a new, personal project on my Facebook page. For months I have been brainstorming, planning, overthinking, and strategizing around starting a blog to share Justin’s bone marrow transplant journey. After hours sitting at the hospital working on the formatting, finalizing the first post, working on the images, and perfecting the finer details of the site I launched Project: Transplant. It had a banner first day with over 130 views in eight hours, I am grateful for the outpouring of support and the ability to share Justin’s story in a meaningful and engaging way.

we-want-to-stress-that-we-are-forever-grateful-for-the-friends-and-family-members-that-have-surrounded-us-with-well-wishes-care-packages-donations-prayers-and-good-vibes-throughout-the-last-year

If you’re interested in following Justin’s journey, feel free to check it out! Be sure to follow via e-mail to get updates when posts are published.

To read more about my story as a caregiver, see The New Normal category highlighted in the menu at the top of my blog home page.

A Letter to the Person Saving My Best Friend

letter

I’ve thought a lot about you in the last four days, which is interesting considering I’ve never met you and chances are that I never will. There are laws that keep us a part. To be honest, I still struggle to understand those laws, but I know they are there to protect us both.

I wonder where you’re from, what your life is like, and your motivation to do such a selfless thing. Are you spending time with family this weekend? Do you celebrate Christmas? Is there snow on the ground where you are? Are you anxious about what all of this means for you? I wish I knew more about what this means for you.

All I know is what it means for me. It means that I have the potential to live out the rest of my life with my best friend, that my husband might be able to think beyond the next 18 months, and that we could, once again, push play on our lives. You see, for the last year, almost exactly a year, our lives have been on hold. We have been living week to week, treatment day to treatment day waiting for the appointment where they say we are ready for the next step. Two months of hoping it was just the flu or bronchitis, another month to find the right treatment plan, and six months of treatment. The time has come, you’ve entered our lives and yet, I know no more about you than any stranger I see walking down the street.

But here I sit, on Christmas Eve, thinking about you and hoping you realize the gift you’ve given my little family. We are able to spend the next few days enjoying time with our families and with each other. We are starting 2017 knowing there is a plan, and what the next step is. It’s comforting. You’ve offered us comfort for the holiday season, and come the day when our lives collide, you will give us hope. Hope that, finally, there is a treatment that will give us more time. It will be the biggest fight of our lives, there will be days where we will be terrified, tired, hopeless, and desperate for relief. There will be days where I forget to be grateful, for you, your family, your selflessness, and the gift you gave us. Please know, that even on those days, deep down, I will be thinking of you.

I hope that someday I will be able to express my gratitude so that you will be able to feel it. I hope that on this holiday weekend that you are happy, that you find time to laugh, and spend time with the people you love. Please know that we will be able to do that because of you.

Signs and a Single Question

signs-and-a-single-question

I like to consider myself a logical person. I need an explanation and an understanding for everything. If you’ve been following The Corner Office for a while, or know me personally, this isn’t a surprise. I need information. Data. Understanding. A plan. I don’t believe in signs, or that the universe provides guidance as you go through life. There’s no explanation for that. No logic.

It does not compute.

2016 brought some hits to my little family. It hasn’t been easy, quite frankly, it has been one of the most difficult years for me personally. In that stress, anxiety, depression, and time of unknown I’ve been searching for the signs and looking for the explanation for the challenges that have been presenting themselves at every turn. It was surprising at first that in the absence of logic, I search for understanding in the universe – a concept that I don’t buy into. I suppose an explanation, any explanation, is better than nothing.

They’re small, but they’re there.

I was ambushed last week with some unexpected news, it came at a time when I wasn’t prepared to take it in. I was engaged in something else, something that needed my full attention and when I looked down at my phone are read the text messages it hit me like a ton of bricks. I turned my back to the group of people that I was supposed to be training, closed my eyes and when I opened them there were two of the most supportive people I’ve ever met staring back at me. Concerned looks on their faces, and I started crying. In that second I knew that these people were in my life for a reason, most likely for this very moment. To quietly comfort me while my back is to a room full of people, get me to refocus, and move forward in what needed to be done. Then the walked away. They didn’t push, they didn’t drag information out of me, they knew exactly how I needed to be supported in that situation. My relationship with them was for this exact moment.

The clarity made me further realize what will be important in the coming months – taking care of myself. I will be forced to make decisions on how my time is spent based on what my mind, body, and spirit needs. Justin’s transplant is looming around the corner and it will be the biggest fight of his life. My job during that time will not be anything other than supporting him to heal, a major part of that will be taking care of myself. My natural inclination to hustle, to push through, and raise the bar will be replaced with one question:

what-do-i-need-right-now-1

Whatever the response, that will be the new plan of action. Instead of creating an aggressive to-do list, I will be taking each day as it comes. If I need to rest, I’ll rest. If I need to focus on work, I’ll work. If I want to blog, I’ll blog. Caring for Justin and taking care of myself – that’s my new 2017 goal. Nothing more, nothing less.

In the last four days there were a series of signs that brought me to this place. A series of conversations, pieces of information, random social media posts, and observations pointed me toward reframing my expectations for 2017. I’m grateful that they were there and that I was open enough to see them fall into place.

 

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.