Post #6 - If You See Her, Say Hello

I knew I was getting stronger day by day. This was not going to be an easy recovery for my body or mind. My mental and emotional well-being was harder to cope with than my physical pain. The only real pain (I still have some discomfort) I had was due to my staples - they would catch on anything and everything I wore. I was able to get around a little bit easier, cook for both Rich and myself, and I built up to walking the whole length of my usual workout. The picture says it all - that was the first time I did the whole walk (albeit slowly) all by myself. Rich was trusting me to do more and more, while keeping an eye on me at all times. He knows I’m not the most patient person; especially, with myself. Slowly but surely, I was getting there. My team of doctors had been checking on me, via phone, and set up my post-op for October 6th - 19 days after my surgery. I was told that I would receive the final pathology report, discuss next steps, and my staples would be taken out.

I was so apprehensive for my post-op. As I walked into the building on 53rd Street, I immediately felt a pit in my stomach. Even the smell triggered my anxiety and I felt like I was in my hospital room again. I knew I was back in the office where it all started. We made our way to the familiar 5th floor and sat in the waiting room. I was only capable of making idle chit-chat with Rich. I knew that the pathology report was going to determine my (and our) future. I then heard my name in the distance and we were taken into Dr. S’s exam room. Esther, Dr. S’s nurse practitioner, came in and asked me the usual questions - how was I feeling? Any fever? Any pain? Any nausea? How were my bowel movements? She then asked to see my incision, and upon seeing it, she said it was time for the staples to come out as she could tell they were irritated. Now, everyone in my life, that knew I was having this operation, had told me the staples coming out was the easiest part. “You’ll barely feel a thing!”; “It’s more like pressure - not pain!”; “It’s the easiest part!” All of these things said to me prior to this day - all lies! Esther started at the top (nearest my belly button) and it felt like a hot iron hitting and ripping at my incision. I laid there through 20 more and the lower she got the more painful it was; I just squeezed Rich’s hand and kept breathing - I did not want Esther to stop, I wanted this over with. I was trying to focus on Rich and my breathing, but no amount of meditation that I have done in my life prepared me for that. At the end of the day, I knew this was a small price to pay for my health. Esther took the time to remind me of building myself back up, and how at 6 weeks post-surgery, I could lift 10 pounds, instead of the 5 pounds I was allowed to lift right after surgery. She also suggested physical therapy for my ab muscles as they were cut for about 7 inches in length, and in an area that needed help rebuilding. After a few more minutes, Dr. S came in with the pathology; which meant, another lump in my throat.

What he said seems blurry now, as my nerves gave me tunnel vision and made everything sound very distant. “No radiation. No chemotherapy.” I couldn’t believe it - I was elated! Actually, there are no words for what I felt in that moment. Dr. S explained that the rate of reoccurrence in the same area is so low (for my type of cancer) that it would do my body more harm to try and target that area with such harsh treatment, like chemotherapy or radiation. He also said that there were no margins left around my tumor and that there was no necrosis. A lot of what he said I did not understand, but as long as it was “good”, I didn’t need further explanation. I also made sure that the rest of my tumor was being used for research, since there are very few cases of soft tissue sarcoma, the tumor is so very important - they can find out more about the cancer and its origins.

The team and I discussed moving forward - which means, CT scans every 6 months for the next 4 years and once a year after that. I’m at a higher rate (than someone who never had this) for this cancer to reoccur in another part of my body, and they want to stay ahead of everything and anything that can be seen by a scan. I thanked him with tears in my eyes and I said he would miss me speaking about my bowels for the next six months. It was the first time I made him laugh. It made me like him even that much more. I think he enjoys giving good news.

I felt like I was on cloud nine. It hit me that my healing could truly begin - with a clean bill-of-health and a clear mind. As we turned the corner from the elevator bank and headed towards the lobby, I was hit back into reality when I saw a familiar face was walking past me. “DiDi?” I called out. The young woman stopped mid-step and looked back at me. “It’s Marissa - your hospital roommate.” DiDi smiled under her mask and said she was happy I spotted her. I was so relieved and astonished I saw her - what are the odds on that? I knew she had a long road of recovery in front of her - she was on her way to radiation and chemo treatments. I felt so guilty telling her I received a good pathology report and was on my way home.

DiDi moved into my room at MSK during my second day in the hospital. I hadn’t seen her or spoken to her yet; although, her moans of pain let me know she was there. I woke up that night in a full sweat - the room felt like a sauna. I had literally drenched my sheets when I knew I had to call for a nurse. Shannon came in right away and said that Didi was in bad shape and they had turned-up the thermostat to 80 for her. I asked for a compromise at about 75 and fell back asleep after wiping myself down. I heard DiDi calling nurses throughout the night and was in constant, and what sounded like excruciating, pain.

The next morning, I heard a soft voice through my curtain. The voice apologized to me - she was worried that she had kept me up the night before. I let her know she didn’t need to apologize and that it was ok. I knew she was struggling and going through a process that was so much worse than my own. I introduced myself and she did as well. She asked if I was ok and what my diagnosis was. I explained my journey to her. DiDi let me know she didn’t like to discuss what happened on her journey. I knew not to push.

When my day nurse, Susan, came in she, again, apologized for the thermostat incident, and I explained to her that no apology was necessary. DiDi had gone for a walk, so Susan spoke openly to me. She explained (without breaking HIPA laws) that DiDi was having a very hard time and they felt like she may be a good fit as my roommate. If you know me, you know I cope using humor. Most of the time, it can be very dark humor - but, I try and remain positive and laugh. For me, if I wasn’t laughing, I would have been crying. They felt like my personality could really help her through this. We were also the 2 youngest patients on the floor.

I overheard conversations with the nurses and doctors, that I know were confidential, but I heard them (as I couldn’t NOT hear them) and started to feel both overwhelming guilt and gratitude. While I went through my own journey, I knew it was very small and mild compared to others - especially DiDi. Over the next few days, my roomie and I spoke about everything and she opened up to me. We actually found comfort, through the room divider, and tried to cheer one another up, when we knew the other person was having a hard day. DiDi eventually shared her cancer journey with me, and I listened to what was a very sad (in my opinion) story. Very long explanation made short-ish - she had abdominal pain and went to a local doctor about it. He said there was a mass and it was just a blockage and that they would surgically remove it. DiDi had friends and family telling her to get a second opinion at MSK, but she didn’t want to as she lived out on Long Island and didn’t want to deal with the commute. So, she went ahead with the surgery at her local hospital, and needless to say, it didn’t help. That is because, my roomie had a huge tumor in her abdomen, that was cancerous, and that it needed to be removed by experts. DiDi had an army of doctors that took care of her at MSK. She ended up with an ileostomy bag and would have to undergo radiation, chemotherapy, and follow all of that with multiple surgeries to repair the damage done prior to coming to MSK. She was living with a lot of regret and couldn’t let go of it. Her pain seemed so much worse than mine, and I felt like I had nothing to complain about. I expressed to Susan, during one of my many walks around that floor, that I felt like I had “Diet Cancer” and that I had no right to feel like I went through a “cancer journey”. She told me she understood, but to also allow myself to feel what I needed to, as I also had gone through my own fight and fought hard to get to where I was. She reminded me that all cancer stories are different and all deserve emotions, feelings, and they need to be grieved in any manner that works for the patient.

So, that day, when I left MSK, and started crying when saying by good-bye to DiDi, I was scared for her - for what she was about to face. I cried because I felt guilty. I knew that it was my mental and emotional health that was going to take a lot of time to heal. The fine line I have walked, every minute of every day since, has been the weird sensation of gratitude and guilt. I knew the tears were the survivor’s guilt setting in.