What a day! Today was a day filled with emotion…a visit from old friends, new milestones for my mom, and signs of improvement. It is hard to believe on a day like today that my mom could possibly be losing a battle with cancer.
We started our morning around 8:00 am when Micah woke up. Amazingly, Maya slept until 9:00 am – 12 hours! As I mentioned in my earlier post, I called my father first thing this morning and learned that my mom had been moved to the less intensive half of the intensive care unit. After dealing with breakfast and nursing and dressing the kids, the four of us headed out to Johns Hopkins to visit my mom.
Elliot dropped me off in front of the building to visit with my mom while he searched for street parking, loaded the kids into the stroller, and grabbed me breakfast. When I arrived, my sister-in-law Jen was already there giving my mom swabs for her mouth. They were just putting her into a chair, and I thought she looked even better than yesterday. They had given her a bath and cleaned off her hair, and her swollen and bruised eye was looking better today.
My mom was far more alert and talkative, and she seemed much more…herself. She was no longer accusing anyone of trying to kill her, and she was far more understanding about what was happening. They had reduced her saline from the 2% solution down to the normal .9% and they had reduced her dosage of steroids from 10 mg down to 6 mg. They did also add an IV insulin drip to try and regulate her sugars, and that was working wonderfully. Don’t get me wrong – she was still complaining loudly about the feeding tube and her sore throat, but today she understood why it was there and that it would remain there until she passed her swallow test. She was doing more to try and cope rather than fight with the tube.
My father arrived a bit later, and at first, the nurse was being strict and wouldn’t allow all of us in the room with her. My poor father was relegated to the waiting area. Determined to bend the rules, I made nice to the nurse and worked the guilt angle…and she finally agreed that my father could join us in the room, too, as long as we promised to behave and keep it down. I stayed with Jen, my dad and my mom for about 40 minutes or so. My father came downstairs with me to keep me company while I nursed the baby and ate my breakfast, which allowed Elliot a chance to spend some time with my mom. My brother arrived shortly thereafter.
And then the day kicked into high gear as the “Scranton troops” descended on Johns Hopkins. What is amazing to me is that my mom has a very large circle of friends that she has known since her childhood. Their friendship has lasted over 60 years, through thick and thin. Some years, they make it a point to get together frequently, and other times…well, years can pass and they don’t find the time to visit in person. In times like this, however, they show up. So today, my mom’s childhood friends Faye and Roz arrived with their husbands Barry and Jay from New Jersey, and Suzette and Joel came up (from Rockville) to meet them, and later on Sharon (from Baltimore) joined them.
It was quite emotional for me to see them all again, especially Faye and Barry. We used to visit with them a few times a year growing up, but it had been four years since we last saw them. Faye brought pictures of my mom from their childhood – including pictures of them in Canada one summer. I know how much that trip meant to my mom because she took us on the same trip for our family vacation in 1987 – one of our best family vacations. I remember her telling me some of her childhood memories from that trip, and it made the vacation even more special for me.
Jeremy, Elliot and I stayed downstairs with the kids and sent the “gang” upstairs with my father to see my mom, and Jen headed home to take care of her girls. About 15 minutes later, Arleen and Lorin arrived for a visit as well. They first spent some time entertaining my children before heading upstairs to visit, too. Over the next few hours, we rotated in and out of the room, visiting, chatting in the lobby, getting food at the food court – it really was a wonderful visit. At one point, someone came out to get me and said my mom needed me. I was a bit worried, so I dashed in there…only to learn that she wanted me to scratch her itchy head because she likes the way my fingernails feel! My mom was doing great – clear, sharp and strong. She was chatting up a storm, sharing memories, telling stories – it was great. At one point, Jeremy played a video message he recorded from Paige and Peyton, and my mom grinned from ear to ear! She was so excited that she was talking back to the video – I really hope we can set them up to Skype soon.
Elliot left around 3 to take Micah back home, and my friend Heather also arrived to watch Maya for me. Just as I thought things were going well…they got better. The Speech Language Pathologist FINALLY showed up to do my mom’s swallow test…and she PASSED!! To steal my brother’s facebook status, “I never thought I would be glad to say the phrase, ‘my mom swallows.’ Well guess what she does….and that means improvement.”
Faye and Barry, Roz and Jay, Suzette and Joel, Sharon and my brother all left while they were removing my mom’s feeding tube. Arleen and Lorin stuck around for a bit longer and we went back in to see my mom. She perked up ENORMOUSLY, and was so excited to drink water. They offered her graham crackers to eat, and my mom was in heaven!
While my mom was eating and drinking, we were watching some of the pictures on the digital picture frame my brother had put together. There were so many childhood photos there that involved Arleen and Lorin and their children Rayna and Stuart, which got us talking about the past. One of the pictures Lorin sent me one summer while I was at sleepaway camp – it was Rayna, Stuart and Jeremy acting out “Barzie and the Indians.” For those of you who do not know Lorin, Barzie was the name of his dog growing up. Thanks to Lorin’s amazing storytelling skills, Barzie sort of became…well, a folk legend. There was a Barzie story for everything…Barzie fought the Indians, Barzie put out fires, Barzie saved lives, Barzie had a bar mitzvah…it did not matter the situation, Lorin could create a Barzie store to match the event! As we discussed Barzie and the Indians, Lorin turned to ask my mom if she remembered Barzie stories. My mom deadpanned and looked right at Lorin and said “No.” I could see the concern flashing across Lorin’s face as she paused another moment before she said “I specifically asked the doctor to remove that portion of my brain.” We all had a good laugh, and smiled because it was just a perfect instance of my mother.
Lorin and Arleen left after that, and I went downstairs to nurse the baby while my father and my friend Heather took their turn to visit with my mother. Heather left a little after 5, and my father and I hung around to help my mother eat dinner and took turns watching the baby and visiting my mom. My mom asked me what was next, and I told her the goal was to get her strong enough to move to a regular floor, then off to Rehab and Radiation and Chemotherapy. She said she had heard that we moved, and expressed concern that we would do something drastic without consulting her. I told her that the only move that had happened was that she moved across the hall in the hospital, and I again reassured her that we would make no major decisions about anything without consulting with her. I pointed out to her that we’d been in the hospital all week that we couldn’t have moved even if we wanted to do so!
While I was up in the room with my mom, Dr. Olivi came by to see us. He said he was thrilled to hear that she passed her swallow test as he anticipated, and he asked how she felt to be eating again. He told her she was doing great, and mentioned that he was trying to arrange for her to start radiation while she was in Rehab. I noticed he had gotten a haircut (it was shaved close to his head), and he said yes, he did it because he wanted to look like my mother. Then he mentioned to her that he noticed she had a black eye and he was sorry about that. She quipped back that she gave him permission to operate, but didn’t remember anything about agreeing to the black eye. He immediately responded and said “Well, you wouldn’t listen to me so I had to hit you.” We all had a good chuckle, and then he left us so that my mother could eat dinner. Turned out, my mom did not need our help for dinner- she did just fine feeding herself.
My father and I said goodbye to her after dinner, and he drove Maya and me home. Another long and draining day, but filled with signs of hope and lots of love. It is days like today when I start to believe in miracles, and think that maybe the doctors are wrong and my mom is going to trounce this tumor. And then I worry that if me, the realist, is reaching for a miracle, my father must be on cloud 9 believing that the worst is behind us. We need more days like today…but it makes the days like Friday so much harder to handle. It is so difficult to find that balance between hope and realism, to embrace the joy while steeling ourselves against the pain to come.
And did I mention that I got my mom’s brisket recipe today? Another small victory.