Post #4 - Desolation Row
After a sleepless first night, I woke up in my hospital room, and I felt like a stranger in a new land that ended up in the wrong place. I met my day nurse, Susan (again - not her real name) and I knew we would hit it off. She first commented on my tattoos and said we were going to get along just fine. She introduced me to my new routine. She first wanted me to sit up. I never thought the simplest tasks were going to be so hard for me. I was made aware (by the bandage down my abdomen) that my incision started right below my belly button and ran (vertically) all the way to “lady town”. We’re talking like 3/4” - 1” from that. I couldn’t see this new, and unchosen, addition to my body art…yet. The bandage would be on for 2 more days. I needed the motorized bed to help me sit on the side of the bed. I was also made quickly aware that I had a ureteral catheter in and would for the next couple days. Since I chose an epidural for my pain management, the catheter was going to help me until my bladder “woke up”. As I got myself into a hunched-over, sitting position, the nausea kicked in. The anesthesia was making its way through my body and causing me to dry heave. Susan was amazing and sat there rubbing my back while holding a pillow over my incision as I felt like it was going to burst open. I wanted to sit in the chair in my room and get myself ready as Rich was coming to see me that Friday morning.
Due to covid, MSK had a very limited visitor policy. Visiting hours were divided into 2 session, 8am-12pm and 2pm-4pm; and, the floor you were admitted to determined your block of visiting hours. Unfortunately, I was on a floor where my hours were 8am-12pm and we live an hour (if you make great time) away from the city. I was a little scared and apprehensive to have Rich see me this way. He has always loved that I’m a “strong and confident” woman; however, I felt I was none of that in this moment. I didn’t have the strength to put on make-up or brush my hair - so, I didn’t quite feel like myself. I couldn’t even sit up on my own. (Let me make it clear - Rich never would expect me to have my hair and make-up done - that was just how I felt.)
Rich walked in and I just felt a sense of calm. He walked in with a smile on his face - not that I could see it through his mask; his eyes let me know he was smiling. He made his way over to me, kissed me, and gave me a half-hug (as I couldn’t stand), and then it happened. I started to vomit. Like many men (in my experience), Rich is not good at the vomit thing. I was yelling “Look away!” like Melissa McCarthy in “Bridesmaids” while heaving into a bag and Susan rubbing my back…again. It ended as quickly as it began. I then started to have tremors in my arms and legs that I could not control. My teeth were chattering, like I was freezing; but, I wasn’t cold at all. I was told the pain team would be in to see me and they would help by adjusting my level of pain medication. That was fine by me as I really didn’t have any pain.
My cotton mouth was like nothing I have ever experienced. I was not allowed any water for the first 2 days; however, ice chips were like a Michelin-starred gourmet meal for me. I couldn’t get enough of them. I was not allowed anything else, as my digestive track was “asleep”. If I swallowed anything, it would just sit in my stomach and make me bloated and nauseous, as it couldn’t process or digest anything. I didn’t need anymore nausea.
My room felt like Grand Central Station. So many people were in and out all the time: my nurse, Susan; the nurses’ aide for my vitals and sponge baths; Dr. S’s 3 attending physicians to make sure I was ok; and, then I saw my pain team. The lead pain doctor was an amazing guy who had shamrocks on his Brooks running shoes. I told him of my nausea and tremors and he asked about my lifestyle. He said that since I live a really clean life (no drugs for a long time, no smoking, and no alcohol), the meds were a lot for my “clean” body. He immediately cut the dosage in half. Thankfully, I was still as comfortable as could be expected and not in any major pain.
The time with Rich seemed to go so quickly and I was just hoping that I hadn’t disappointed him in some odd way. It was obvious, this illness didn’t just affect me; it affected everyone in my world. And, I felt enormous guilt for doing this to him, and us.
I then FaceTimed my sister, Dawn. Throughout my entire process, my big sister was a rock. She was never hysterical, dramatic, or overly-emotional. It was all very “what’s next” and “I’m here for you.” That’s all I wanted or needed - and I think Dawnnie knew that. As soon as I saw her face, I cried. She spoke to me as much and as often as I needed. Days get very long in the hospital when you’re alone and you can’t have a rotation of visitors. (I had a great roommate, DiDi - I’ll get to her in a future post!) Dawnnie always answered and made me laugh. As children, we used to play a game called “Make Me Laugh”. I guess it was all practice leading us up to this moment. She knew that was exactly what I needed her to do: listen, talk, and bring humor to this very scary and anxiety-riddled time.
The next few days felt like a year had gone by. The nursing team stressed how important it was to get up and walk around the floor. Every day, I made a goal of the laps I wanted to walk. All of us patients had our masks on and were walking with “our wheels” - the IV carts we were all hooked up to. I kept looking at the people walking faster and longer than me, and, I knew I had to keep going. It definitely ignited my competitive streak. If the team told me I had to walk to get out of there and get home, I would walk all day and all night. Turns out, on day 1, I could only do 3 laps. Just to give you an idea, 14 laps was a mile. As someone who walks and/or jogs every day, it was such a blow to know how quickly it can all be taken away.
Sunday, Dr. S’s team came to check on me and they let me know they had to take my bandage off. I was scared and trepidatious to even look at it, as I knew I’d have to get used to my new “artwork”. The bandage coming off was probably the most pain I had felt up to this point. My stomach was so bloated and round - it looked like I had swallowed a bowling ball - I could barely see my scar. So, after they left, I wheeled my IV cart and walked myself into the bathroom, stood on my tippy-toes, and looked into the mirror. I just started crying. I think it was all too real for me. Seeing the 21 staples holding my incision together was jarring for me. I wouldn’t let anyone see me cry about this, but I felt grotesque and broken.
The same day, my bloodwork came back from the morning’s readings. One of the possible complications of my surgery was bleeding. Dr. S was scared as he was removing a major artery, that I would need a blood transfusion - they even inserted a wide gauge IV into an artery in my wrist for quick access. I did not need a transfusion during surgery, but they wanted to keep an eye on it afterwards. They thought I was in the clear, and the IV was taken out of the artery on my wrist. Well, today, the numbers were all too low, and I was going to receive 2 bags of blood. More sticking, more poking, more prodding. The first vein they tried did not take…it blew and I had a huge bruise on my arm. I still have the remnants of that bruise on my arm. It was gruesome. Getting the blood made me tired, irritable, and nauseous - I knew that this day, Sunday, was my low point. I didn’t want to talk to anyone, see anyone, or be around anyone. Kind of hard to do in the hospital. My new day nurse, Carol, sat with me and tried to comfort me, but I wasn’t having it. I was in no mood. I kept telling myself that I could cry and have the one day to feel like this, but after that, I am getting up and fighting another day to just get home. I liken it to my favorite quote from “Rocky” - “…it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. It doesn’t matter how many times you get hit, you just have to stand up one more time than you fell down.”
Monday came and I made up my mind that it was going to be a good day. Over the past few days, slowly, but surely, I built up my endurance as I was able to walk more and more laps. The pain team was amazed that I wasn’t “pushing the button” and that I wasn’t in physical pain. They said I was “one tough lady” and a “rockstar”. I definitely didn’t feel like one. Sunday I did 8 laps; Monday I did 14 laps; and, Tuesday I did 20 laps! I had to do it for myself to get myself better and home.
Dr. S’s staff had been keeping a close eye on me. My epidural came out on Tuesday (apparently, it was already out and I wasn’t getting pain meds for a few days) and they wanted me to go home on Wednesday. Immediately, I felt a wave of panic come over me. I immediately called Rich and said I needed him to pick me up the next morning and then I called my mom, as they wanted to be at our place the same day I got home. The plans were in motion. As happy as I was to leave the hospital, I felt scared and unsure. I spoke with the nursing teams and told them about my apprehension. They assured me it was normal. I just didn’t know if I was ready; I didn’t know if I could manage in my home; I didn’t know if Rich and my parents could care for me the way the hospital did. As much as I wanted to leave, Sloan Kettering had become my insulated cocoon. After 6 nights in the hospital, I was going home.