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

I cried at work this week. I hate crying at work, and frankly have done it more times than I’d like to admit. I’ve learned to control my crying, which is a skill I have longed for over the years. Earlier in my life I went from prickles behind the eyes to full on blubbering in less than 10 seconds. Quivering chin and all. Thankfully, with a deep breath, staring off into space, and usually, a pinch to my forearm, I now have more control of those tear ducts. But on this particular day, with this particular set of circumstances, no amount of deep breaths, staring or pinching was going to make a difference. I broke down.

I’m always prepared to hear the news that Justin has a reoccurance of his lymphoma when we visit his doctor every few months. You just never know and we are always equipped to take what comes. We’re pros. When Justin told me a couple of weeks ago that he knew it was back, I started mentally preparing for it. We went to the doctor, he got some tests and we “lived our lives as normal” as we are always told by his hematologist. Fridays are doctor days. I usually have an entire week to prepare myself for every aspect of our trip into the office, down to the clothes I am wearing. You never know when you’ll have to spend 13 hours at the hospital. Comfy shoes, jeans, a decent but comfy top, a light jacket in the winter, and always freshly showered. Doctor visits give me things to focus on. We sit together in the waiting room, make jokes, play on our phones, people watch, and complain that we are hungry. We’ve got it down. That’s the part they never show on TV or in the movies. The part that makes it bearable.

It was only Monday. I had four more days and back to back meetings all day. Justin was home sick with a rather disgusting version of the stomach flu, I was worried but knew he would be on the mend. In the middle of my last meeting of the day my cell phone rang for the third time that hour, it was the hospital again. I stepped out of the meeting into the busy hallway of my office and had a doctor “go over Justin’s test results” with me over the phone. Justin was home sleeping and hadn’t picked up his phone. I was the one who was going to have to tell him.

I listened intently as this person I had met only a week before told me about where in my husband’s body the cancer is. My mind immediately was split in two.

“I need to listen to him” I’d remind myself.

But it was Monday, I was in a hallway at work, I was not with Justin, I wasn’t wearing my doctor appointment attire, I had to pee, and had a meeting that I had to get back to. This is not how we do this. I awkwardly left a message for my husband relaying, word-for-word, what I had been told.

“I love you, see you soon.”

And I walked back into my last meeting of the day. After the meeting ended, I got back into my work area and broke down. It wasn’t really that the lymphoma was back, it was that Justin and I have found a way to just make this a normal part of our lives. I got a heartbreaking phone call in the hallway of my office, left my husband a detailed message on what is happening and walked back into a meeting without missing a beat. Its the new normal.

I don’t cry about the lymphoma in front of Justin. It is one promise I made to myself when he was diagnosed. It’s not about me. At all. My role is to support my husband however he needs me to, to be his second set of eyes and ears, to love him just as I do any other day of the week. To make “living our lives as normal” relatively possible. So I cried at work. I finished my day, smiled as I walked out the door, called my mom on the way home, walked into the house and went back to normal.

“How was your day?”