(Full Disclosure: Caleb and I started this as a travel/personal journal for the two of us. Over the past year it has been an efficient way to keep friends and family in the loop with my what’s happening with my health. But first and forever foremost, it’s a personal journal for us. That’s how I try to write for it. I’ve had a couple friends say to me “I can’t believe you’re comfortable sharing these things.” I’m not writing this with the intent of sharing it. Most posts anyway. This is for me. For us. If it’s too much, don’t read it.)
I haven’t kissed my husband in 33 days. 33. If you’ve been around Caleb and I for any length of time, you might describe us as my friend did last week. “Yea, you guys are touchy feely.” We are. We snuggle, we hug, we hold hands, and we kiss. It’s just what we do; it’s how we communicate. This has been the hardest recovery yet and it’s not over. The surgery damaged a nerve that controls the movement in my right arm. I’m still unable to turn my neck from side to side and can only lift my arm about six inches. I can’t lay on my right side and sleeping is painful. Snuggling is out of the question and hugs are difficult. Having that taken away from us has been one of the hardest parts of this for me. Dr. Weisman has prescribed physical therapy and says that with time and work the movement will come back. I’m hoping soon, to say nothing of missing out on snuggles and hugs, it’s also my shooting arm for photography.
The physical pain from this third surgery was more than I was prepared for. Even after two surgeries, I thought I knew what I was in for, but this one threw me. And staying in the hospital made it that much worse. You don’t sleep in hospitals. You’re poked and prodded and woken up every two hours to take meds, take vitals, or have another needle stuck in you. I wouldn’t wish this past month on anyone.
After October’s surgery we simply waited. We waited to hear about appointments, about insurance, and from the tumor board. It was limbo to the nth degree. The loss of control could have been crippling; it was for a bit. We couldn’t do anything. So I decided not to dwell on it. Maybe that wasn’t the healthiest thing in the world to do but I just couldn't handle it. Should I have prepared for the worst? Perhaps. But preparing for the worst wasn’t going to make the worst any more bearable.
Three surgeries in thirteen months is no small thing. In the last week and a half before January 27th I started to lose it a bit. The days started to feel like a countdown clock as I wrapped up projects and started putting things away for “later”. Everyone tried to take my mind off of what I was headed for. Caleb, Tim, Jess, Jared and Marley took me out for a night downtown and I had so much fun. Caleb whisked me away to Santa Barbara the weekend before surgery and we were able to let go of all the worry and just be with each other.
When you get sick people really come out of the woodwork. It’s amazing how loved and supported I felt leading up to surgery. Friends and family were constantly sending messages, cards, and texts. And even random people were chiming in with their love and support via Facebook and email.
Caleb and I spent the morning in pre-op taking selfies and talking about anything other than what was about to happen. Dr. Weisman was running late so the wait was a bit longer than we anticipated. About 10 minutes before heading into the OR he stopped by and marked up my neck. “We don’t want to go in on the wrong side now, do we?” They always rattle off this joke and I never find it amusing. No. No, we don’t want to go in on the wrong side. How hard is left and right for surgeons? You would think that would be day one in medical school.
My nurse then pumped my IV with some fluid and said, “This is just going to help you relax. We won’t put you under until we’re in the OR. It’ll feel like a really strong margarita.” It felt like two. But I wasn’t complaining. I vaguely remember being rolled down the hall and chatting with my anesthesiologist and OR nurses before everything went black. Who knows what I said to them. They probably have all my passwords or something.
As soon as I woke up I knew this recovery was going to be far more difficult than anything I’d yet been through. I was groggy, more so than waking up after my last two. It had to be the morphine. I could hear Caleb’s voice nearby, but I couldn’t seem to keep my eyes open. After my last two surgeries I felt sleepy but not disoriented and I always asked for a pen right away and wrote the word “husband”. For some reason he was never allowed to sit with me until I woke up. This time I heard him. So I had either been in and out of it and had already asked for him, or he had been sitting with me for quite some time and I just couldn’t remember. There were a bunch of hands all over me, and despite being snuggly with Leb, I don’t particularly like being touched by others. All I could think was “Leave me alone, stop touching me.” And then my groggy brain realized I was being moved to a different bed. Which meant I was leaving recovery and headed for the Med Surg floor.
The pain was indescribable. Even with the morphine. My throat was on fire from the breathing tube and I couldn’t feel half of my head and neck. It felt puffy and swollen, like a horse had stood on my neck and face for a bit. Despite the numbness the pain was excruciating. How could I not feel anything and yet feel everything? Like I said, indescribable.
I arrived on the floor during a shift change. Worst decision ever by God knows who. The nurses seemed to have no idea who was watching me. I had my vitals taken by four different women in fifteen minutes until finally I could hear my mom say “She’s had that done four times already, could you guys leave her alone?” “That’s right, get ‘em Mama Bear” is all I remember thinking. My head was screaming and I was somehow able to communicate that to Leb and Mom. I guess severe headaches are a side effect of morphine? They covered my eyes with a mask but couldn’t keep my roommate quiet.
The first night was spent in and out of a morphine cloud and next to a very loud and lousy roommate. Every voice, every noise from her TV was excruciating. Recovery? In a hospital? You NEVER sleep. How the hell are you supposed to recover?
When Dr. Weisman’s resident dropped by the next morning he told me I couldn’t go home until three things happened. I had to be off the morphine. I had to be up and moving. And most importantly my drain had to be producing less than 30 ccs of fluid.
Ok. Challenge accepted.
I stopped asking for morphine. It was burning the crap out of my arm anyway and making me horribly groggy. Not to mention the splitting headaches. The downside was that the alternative were pills; Percocet to be exact. I couldn't even swallow veggie broth. They cut each pill into four tiny pieces and I tried as hard as I could to swallow each piece with a tiny sip of water. That went on for the rest of my stay.
That afternoon I started taking laps around the unit floor. They have this painfully embarrassing whiteboard chart with each patient’s name and additional columns for laps completed. Apparently if you reached a certain number of laps it was a mile. They even had little magnetic race cars so you could make it a competition if you wished. Leb liked moving the car each time we passed it. I just wanted to be home. I was far from a mile that first day. Four laps would have to do.
The next two days were more of the same. No sleep, vital checks, pain pills, laps, crappy vegetable broth, and vicious cycles of pain. The nurses were horrible about getting my meds to me on time, usually a half hour behind, and by then not only had my pain built, it was running away with me.
Finally on day 4 the drain was removed (which was one of the most terrible feelings) and I was allowed to go home.
Once we arrived home it was more of the same. No food, lots of pills, and sleeping on the couch for two weeks. My wonderful couch is made mostly of pillows and each night Leb would pack me in like a can of sardines so that my neck and shoulders were stabilized. Mom and Caleb have learned how to manage my pain from the previous two surgeries and instead of it building steam like it had been in the hospital they were able to take the edge off.
After two weeks of liquids I started to venture into some soft solids. I am now able to eat most things, although slowly, and have been off heavy painkillers for about two weeks.
I’m a month out from surgery and I’d say I'm functioning at about 60%. Each day gets a little bit better and I am hopeful that I will be back to my old self soon. Caleb and I have quite a year coming up and there’s no room for cancer on the calendar.
The unbelievably good news is that there were no more cancer cells in any of the tissue removed. I won’t have to consider radiation and I’m on a monitored schedule that includes a combination of scans and visits. I will gladly take all the pain I’ve endured for a prognosis like that!
Thank you to everyone for all of the well wishes, the cards, the flowers, and the social media messages. They mean more than I can say.