Post #5 - Shelter from the Storm
And, just like that - it was Wednesday morning and the staff was preparing for my departure. The fear of coming home was an unexpectedly overwhelming feeling. I was very busy that morning, as MSK had my team of doctors come and speak to me about aftercare and my post-op visit; a discharge nurse came and told me about the warning signs of what to look for in terms of an infection; a nutritionist came and spoke with me about the “soft foods diet” I needed to continue to follow, as my digestive tract was healing; a pharmacist was next - to give me all the meds I was to take at home. I barely got to say good-bye to the nursing team that had brought me back from a very dark place. I can only assume that they learn, very early-on, to not get emotional or attached to any patient; however, I felt a huge attachment to them. I felt like we had been through a war together.
An orderly was at my door asking “Gaster?” and, I knew it was time. He loaded me into my wheelchair with the one bag I brought and the flowers I had received at my temporary home. I had to say good-bye to my roommate, DiDi, and wish her well, and that’s when the tears started down my face. Through the curtain that divided our room, I felt we created a bond that only she and I shared. (Again - more on her in a future post!)
I was wheeled past the nurse’s station and into the elevator. Every little bump and turn hurt my incision terribly. I had asked Rich to bring a small pillow in the car to put between my wound and the seatbelt. I knew it would be a tough ride home. Anyone who has been in a car in or around NY knows our roads are horrible, potholes are abundant, and people drive like no one else is on the road. As I walked out of the front door, I walked as quickly as I could to get to Rich while inhaling the fresh air (as I had not been outside in almost a week). I immediately started sobbing - sobbing like I never have before - it was uncontrollable. To this day, I don’t know why I was crying. I think it had to do with letting out all the emotions I was feeling - happiness, fear, anxiety, relief. I also feel like I was finally able to let my guard down; and, as the wall crumbled, I did too.
Rich did the best he could to make the ride home manageable. As we pulled in, I tried to get myself out of the car to no avail. Rich helped me out, and I was able to take the 6 stairs into our doorway. I began sobbing again. Somehow my home felt foreign to me. Everything looked like an obstacle and not somewhere that was going to be easy for me to navigate. Rich made me a piece of toast and some tea so I didn’t lose my strength.
As I made my way to the first-floor master, I realized just how high off the ground our bed is, and how hard it was going to be for me to get in-and-out of it on my own. So, Rich moved one of our dining room chairs into our bedroom so I could watch TV in there while awaiting the arrival of my parents. He had to go upstairs, into his office, as he still had work - it was a Wednesday. I tried to remain calm and find a comfortable position. I can’t recall what I half-watched, as all I wanted was to see my mom and dad.
Out of the corner of my eye, I saw their SUV pulling in and I walked as quickly as I could (which was a slow pace) to open the door. I stepped outside onto the front porch and just started sobbing again. As my mom ran up the stairs and hugged me, I knew everything was going to be ok. We hugged, for what felt like 10 minutes, and then I looked at her and saw she was crying just as hard as I was. I was again reminded how much this disease was affecting, not only me, but all of the people in my life. A wave of guilt rushed through me.
We came inside our home and my mom and dad were unloading, what looked like their entire kitchen, from the car. My mom knows how to nurse one back to health after cancer - she must have been cooking for the weeks leading up to my surgery. My mom knew that she, my dad, and Rich were going to need to eat, and knew I would only want her food during my healing. The plan was for them to stay for a week until I was a bit better and was able get around on my own. It would have been a lot for Rich to handle by himself. I’m not always the easiest patient - I know this much about myself.
The first night, we sat around our dining room table and laughed and talked for hours. We were all surprised how quickly the time was going. I wasn’t eating much and was still in pain. I didn’t want to be on pain medication, so I was managing with 2 Tylenol, twice a day. (I’m not a fan of pain meds at all.)
I felt like I was 3 years old again and unable to care for myself. I knew I wanted to shower, but no one outside of the hospital had seen my scar and I wasn’t really ready. But, my need and want to shower was greater than my pride. I asked my mother if she could help me as I didn’t want Rich to see me with the scar yet. Without hesitation, my mother jumped into action. I never thought at the age of 42, that my mother would see me completely nude and have to help me bathe. My mother, Nadia, has been my rock my entire life - taking care of me physically, mentally, and emotionally. She is my mentor, my role-model, and my best friend. I have the utmost respect for who she is and how she handles any and all adversity with dignity and grace. She stood there and reassured me that the scar didn’t look bad. She counted my staples and touched me so gently where the doctors had cut me open. My mom helped me into the shower and kept me calm while talking to me throughout the whole shower. Nadia had to help wash my back and then after rinsing, helped me step out of the shower. My mom dried me off like she used to after my swim lessons when I was 6. It meant everything to me that I was able to keep my dignity and decency when I was at my most vulnerable.
When we woke up the next morning (Thursday), Rich had a bunch of zoom meetings. So, after an early morning of coffee and breads (my mom bakes, as well!), my parents said they would take me to my favorite park so I could walk for a little bit. I knew I needed to keep this up to get my mind and body going - I couldn’t just be a couch potato while my healing continued. We drove the 5 minutes down to the park I walk or jog at every day. It is a beautifully paved path that runs along the Hudson River. I usually do the path that is about 1.5 miles each way; however, this being my first day, I asked my parents if we could just do the end “loop” - about half a mile, if that. I walked so slowly - I swear toddlers were lapping me. My parents stayed so positive and encouraging. They kept asking if I wanted to stop, but I knew my stubbornness was kicking in and I wanted to make it to the end.
Countless days before my surgery, I would come to this path, put my AirPods in, blare some music, and try and take out all my emotions by beating this path with my feet. There were times I would look out at the water and realize I had been crying for minutes. At that time, before my surgery, all I wanted was to see this view again, smell this air again, and feel the breeze against my face. And, here I was…tumor gone, with my parents, and starting my journey back.
The next couple of days were filled with laughter, walks, movies, tv, and long meals around our table. I knew I was progressing. The taste of food was getting better everyday, and I felt a bit stronger every day. The hardest part, and forgive me for speaking about this, has been getting my bowels back to “normal”. Having a foot of my colon removed had (and still) wreaks havoc on my digestive track. I never knew I’d be so comfortable speaking about bowel movements with anyone who asks.
My parents were supposed to stay until Wednesday morning. However, we had been getting some news from home from my sister (since Saturday) who was in charge of being my grandmother’s caretaker in my mother’s absence. My mom and dad take care of my grandmother, as she is 93 and has Parkinson’s Disease. My grandmother is not easy to care for, and I was concerned that a week away was going to be too much for Dawnnie to handle.
Early Monday morning, I heard knocking on Rich and my bedroom door. My mother said that she and my dad needed to speak with us. We quickly got up and made our way into the kitchen where my mom was already cooking - it was like 7:30am. She told me that Dawn had been texting and that Grandma fell through the night. While grandma was ok, I knew that I (and all of us) had lost the battle - they were leaving. After not even 5 days, my parents were going to be leaving ASAP, but my mom wanted me (and us) to have food since they were leaving early. I swear - I don’t deserve a woman this good as my mother. (If you knew me as a teenager - you know this to be true!) My first feeling was fear. My mother was literally and figuratively holding my hand for the past few days and I didn’t know that I could do this without her and my dad by my side. I could feel my eyes welling up with tears. I knew it killed my parents to be pulled in both directions, so I swallowed my emotions and said what I thought my mother needed to hear. “It’s ok, mom. I’ve got this and we will come back soon.” Rich immediately suggested us getting in the car and following them back to Ohio to finish my healing, as he knew how scared I was for us be on our own. As much as I wanted to, I knew my body couldn’t do the drive. Seatbelts alone were a challenge - I couldn’t imagine trying to use a bathroom at a rest stop or gas station; I couldn’t imagine taking the wheel for Rich at least for a few hours; and, I couldn’t imagine trying to manage the bumps in the road for 7 hours. So, that was it. They had to leave us. After they left, I just wept. I was stuck in my fear. My parents have always made everything feel like it was going to be ok and that there wasn’t anything we couldn’t handle together. Now that they were gone, I was left wondering if I could do the healing I needed to without them.