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.

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.

The New Normal: Unlikely Places

I hadn’t been able to put my finger on the word to describe it. The mood, the atmosphere, the camaraderie, the bond that comes with being a patient or family member visiting the University of Michigan Cancer Center on a regular basis. It hadn’t occurred to me before last week, while I sat in the waiting room of the clinic feeling annoyed and just overall frustrated with having to spend the day at the hospital.

I was grouchy to begin with, for no particular reason but after spending most of our morning waiting to spend more time waiting I just couldn’t shake my funk. I ate my free bagel, drank my free coffee, and just kept my nose in my phone, constantly checking my WordPress Reader and Twitter feed. It seemed safer, for all of those involved, that way. Eventually, we saw the doctor. I really enjoy Justin’s clinical trial doctor and his team. They all really make an effort to spend time with us answering questions and explaining how things work, mostly, it seems, to put our anxiety at ease. Once our time with the good doctor was up, we had a four hour gap in our appointment schedule. More waiting. As we sat in the waiting room, appropriately named by the way, I found myself frustrated with…well…myself.

I had no reason to be grumpy, frustrated, annoyed, or even irritated. Waiting is par for the course, we have accepted it as part of the process of fighting and, ultimately, healing from this disease. It’s one big waiting game. I glanced up from my iPhone, looked around the waiting room, Justin was heavily involved in his game of Candy Crush, the lady directly in my line of sight, who had been sitting in the same seat for almost three hours was asleep again, the older couple on our right were having a phone conversation with, what I assume was, their son or daughter, and the receptionist was chatting about brightly colored sneakers with the man in the wheelchair to my left.

We were all waiting.

In that moment it became clear to me, once again, that this day wasn’t about me. Everyone within an eye-shot of me was battling a similar fight, and waiting, in the appropriately named room, to go back to their life. I was being selfish. I was supposed to be spending the week looking for kindness in the world around me and instead I was so& Jace self-involved that I didn’t even bother to stop and look around. As if on cue, a doctor walked into my line of sight across the room with her patient and her family member. I couldn’t make out their conversations, but I could tell the patient was having an emotional reaction to what was being said. Suddenly, the doctor wrapped her arms around the woman, pressing her head into her shoulder and she took the hand of the family member – all at the same time. In that single moment I had found the word that I had been looking for to describe the feeling of being in the that space: kindness.

People are just kind to one another in the Cancer Center. There’s a mutual understanding that everyone is there for the same reason. To heal. As a patient you are there to heal your disease, as a caregiver you are there to heal your soul and provide the support for your loved one to heal, as a doctor you’re there to heal your patients. It is a giant web of emotional support and mutual understanding. No one is rude, or yelling, or demanding answers. We are all just waiting, patiently, to heal.

revofkindnessAs I watched the doctor comfort the patient from across the room, I pulled out my phone, not to go back to putzing around on the internet, but to document the kindness I witnessed in an unlikely place. As part of the Kindness Challenge, that was my charge for the week. To look for kindness in my world. I’m sure, that if I had been more aware of my surroundings that day, instead of feeling so grumpy about being there, that I would have witnessed more acts of kindness. That, in fact, was the hardest part about the challenge last week, was remembering to look for the kindness in my everyday life instead of quickly reacting to every situation. It is a lot easier to jump to conclusions, to go with your negative thoughts, and just chalk it up to a bad day, but if we actually took the time to look for the good we might be spending less time wallowing in the bad.

 

The New Normal: The Waiting Game

I suspect that you don’t have to be going through treatment for cancer in order to have to master the game of waiting. 

There is a systematic process to everything in the University of Michigan Cancer Center. For us, lately, and most certainly today, a large part of our process has been waiting. We are closing in on our tenth hour for the day. Day one of “lead in” treatment has been relatively uneventful, but we’ve struggled to keep ourselves entertained. I’ve buried myself in a book I’ve been reading and Justin has burned down his iPhone battery twice playing videos and obsessively figuring out jigsaw puzzles. Everyone around us seems to be moving at this higher speed. Other patients have come and gone with their families, staff have ended their shifts and packed up for the day and here we sit waiting out the rest of our time. There is one family that remains behind their privacy curtain that has some more time under their belt today. They came prepared as I have been listening to their epic Yahtzee game from across the room. 

We are all just cogs in the systematic process of April 12th in the University of Michigan Cancer Center. 

  I am grateful, after his severe allergic reaction three weeks ago, that Justin is sitting in that same chair mostly symptom free on his new treatment protocol. He has been goofy, happy, upbeat, and strong throughout this entire day. His strength has eased my anxiety. 

We have figured out how to push through the idle waiting time, we work together. We depend on each other, we laugh until we notice how loud we are, we roll our eyes, we chit chat with the staff, we eat snacks, and we take it one step at a time. 

My advice to anyone stuck in what seems as idle day of waiting: find low maintence ways to keep your mind engaged, without requiring solid focus. Years, and even weeks ago, I assumed I could use this time to work. I lugged laptops and books around with me during 12 hour hospital days to never even unzip the bag. It’s just not feasible to expect that kind of focus from your brain. My phone, a good book, a pillow, and some snacks are all we needed to make it through the waiting. 

The funny thing is, a boring day of waiting is what you shoot for. No one comes into this room expecting or wanting to have an exciting day. You aim for boring and hope that you can keep yourself distracted enough to make it to the end without becoming bitter and cranky. 

I think we were successful today. Knocking on wood the next 45 minutes remain just as boring as the last 600. 

The New Normal: We’re Not in Kansas Anymore

I always get excited about a new month. Nothing really changes between the 31st (or the 30th, 28th or 29th) and the 1st, but the transition from one month to the next is usually pretty refreshing. It’s a chance to start fresh, and there’s nothing wrong with that.

February was rough. For a short month it was packed with, what seemed like, more than 29 days worth of stress, worry, and questions. Some questions got answers and some were added to a list to be figured out at a later date. As if February wasn’t hard enough, it was leap year and we were “lucky” enough have one extra day. Our extra day was spent meeting with the bone marrow transplant doctor that we had been referred to as part of Justin’s latest treatment plan. Here we were again, listening to a man we had just met, explain what was happening in Justin’s body and what our next steps are.

There’s no flexibility with a bone marrow transplant. You are essentially being told that the next year of your life is being put on hold. We were shocked.

We’re not in Kansas anymore ToTo. 

This was no longer the treatment process we knew and had gotten used to.

The night before his appointment, I spent some time putting together a binder to organize all of the paperwork that we had been given recently. I was getting overwhelmed with all of the information being packed in my brain and I knew eventually I wouldn’t remember the simplest of details. I felt prepared and like I was, finally, ahead of the game. As the doctor and transplant coordinator kept talking and handing me folders, packets, study information, and things to fill out I just kept thinking…

“Damn, I’m going to need a bigger binder.”

It felt like we had fallen into another universe, and again, had left with just as many unknowns as we did answers. As we walked through the maze of the main hospital and parking garage I felt extremely thankful that Justin’s dad had come with us that day. I just wanted to shut my eyes and turn my brain off for a few minutes. I was asleep before we hit the expressway.

When Justin and I got home we didn’t really talk about the details. There was no use trying to control things now. A bone marrow transplant won’t happen for at least four months, and if we learned anything from the short month of February, it’s that we have to take this one step at a time. Stupid extra leap day.

The next morning I got to work early to make up some time I had missed the day before, eventually I realized that it was no longer February. It was a relief. It made processing the year ahead of us a little less daunting to think about. I felt like a new month gave me the motivation to leave the shock behind me, with February. A new month and a new mission.

I can’t help but think that the bone marrow transplant appointment being on the last day of that awful month was more than a coincidence. I’m not usually one to believe that things happen for a reason, especially lately, but whatever made it happen, I’m thankful for it. Justin and I have a fight in front of us and we are as ready as we can be. It will be different, more difficult, and scarier than any other battle we have seen. We’ll get through it, one month at a time.