Overall, today was a good day. My phone rang at 5:00 am…and it was Mom, calling to say “Hi, Tessie.” I don’t care that she woke me up – I was just so excited that she was calling. We were not on for long, but it brought a smile to my face.
I promised yesterday that I would explain why my mom calls me “Tess” or “Tessie.” According to my mother, when I was a small child, I pronounced my name as “Tessiekeys.” She was convinced that I would get lost somewhere, and that the police officers would never manage to get me home again because they would be searching for a Mr. and Mrs. Keys who had lost their daughter Tessie. My mom used to always call me Tessiekeys to tease me, and then she would shorten that to Tessie or Tess. She still calls me that to this day.
Micah and Maya slept until about 8:30 am today, and then we were off and running. Much to my surprise, our babysitter showed up at 9:00 am sharp! We hadn’t discussed whether she would take off for Labor Day…to be honest, I assumed she wouldn’t be showing up. But, I was thrilled to see her when she did arrive. My dad called a little after 9 to give me the daily update about my mom (she slept well and they were just headed in to wake her up). My mom called me again around 10:00 to tell me that there were a ton of helicopters landing at the hospital, and she thought if I stood in between the buildings with Micah, he would get to see the helicopters and he would love it. I smiled…my mom has always had a thing for airplanes and helicopters. She used to love to sit and watch the planes take off and land from the airport, and there is a spot on the GW Parkway that she always enjoys because you can see the planes taking off and landing.
Around 10:30, Elliot and I gathered our things and headed up to Hopkins with Maya to visit my mom. When we arrived, Trenna was already there, and my mom’s other college roommate, Reggie, and her husband Charles, were also visiting. My mom was just returning from a therapy session, and definitely feeling a bit tired. My Dad and Mona arrived a little later, followed by Jeremy and the girls…and the parade of visitors began. The girls did so much to lift mom’s spirits…and they couldn’t get enough time with Grampy, either! The girls were still sporting their sparkle tattoos they had gotten at the baby naming yesterday (Micah, too, still had a sparkly blue and green turtle tattoo on his arm).
Mona, Reggie and Mom had an opportunity to sit and reminisce about their college days. It was fun for me to hear them chatting and sharing stories. Next, my mom’s co-worker, Chi, and her son came up to see us. It was so wonderful for them to make the trip up, and my mom was thrilled to see Chi. She brought my mom this wonderful green tea sponge cake that she loves (and Chi, we gave her a piece after dinner tonight). Shortly thereafter, Trenna said her goodbyes and left to drive back to Syracuse.
The visitors continued throughout the day. Our friends Elaine and Robin were the next to arrive, and were there for several hours. I think this visit was particularly challenging for them…they lost their son-in-law to Lymphoma nearly 2 years ago. Jeremy had to take the girls back home, but they had a wonderful visit with all of us. Diane and Marisa also stopped by for a little while (and dropped off some brownies and cookies). Elliot had to leave to get home in time for the babysitter to get to her second job, so I decided to drive home later with my Dad and Mona. Mom had to head to another therapy session, and she was getting exhausted. She did really well in physical therapy today – they worked on standing and sitting up straight, and helping her turn her head to utilize the vision she has. Today she was doing a better job of turning her head and lifting her left arm. By the end of therapy, however, she was completely exhausted. Luckily, she had a bit of time to nap.
After therapy, the doctor came to speak to us. We learned that all the blood thinners my mom has been on made her blood too thin, and put her at a huge risk for a massive bleed. They said that they like to see the clotting factor around a 2-3, and my mom’s was almost at a 5. They asked for permission to give my mother a platelet transfusion to try to bring the clotting factor back down again. They will continue to monitor her levels, and if the first transfusion does not get her in range, they will do a second transfusion. If they overshoot and her clotting factor drops below 2, they will restart some of the blood thinners again. What a mess! I was worried about her blood clot, but they said that keeping her clotting factor between 2-3 would be the ideal level for dealing with her blood clot. Luckily, she has a PICC line in, and the transfusion went off without any issues.
My dad’s cousin Marlene and Hank were the next to arrive. My mom chatted with them and she talked about looking forward to seeing their new house at Thanksgiving (if it is done in time). I sure hope that happens. We rounded up the day with a visit from Sheila and Les on their way back into town from a wedding in New York. Sheila had crocheted a beautiful hat for my mom – the hat she is sporting in this blog. My mom was thrilled to have the hat, and she said it is keeping her nice and warm.
At the end of the day, my mom started asking some questions about how we were going to manage her at home. She was quite astute when she looked at me and said “I think maybe I’m far more debilitated than I realize.” I looked back at her and said, “Yes, mom, unfortunately that is true.” We talked a little about her coming home, and I said we were doing everything we can to get her there. We talked about the fact that if she comes back to their house, she wouldn’t be able to manage the stairs, or get to a bathroom. I asked her whether it was more important for her to get back to the house, or to just be in a home with us. She said that she didn’t really care about the house itself, she just wanted to be with us and not alone in a hospital. Although, in the next sentence she said that maybe she should be moved into a home like we did for my grandmother. Frankly, I think until she fully understands her physical condition and her prognosis, she probably cannot give a full opinion about what she wants. I think that her first choice would be to go home and live as she did before all of this happened…but that isn’t going to be an option.
Over the next week or two, we will need to start making some decisions about our future living arrangements. I know it is my hope to have her home with us, so that she can have her family around her when the time comes. But most of all, I want her to have the best possible quality of life for the time she has left…I don’t want to confine her to a hospital bed in the middle of a living room and strip her of her last vestiges of dignity if she is stronger than that.
To be honest, a lot will depend on how much time my mother is likely to have…we may only have weeks, but we could have a few months. Unfortunately, no one knows what will happen. It was only 10 days ago that we thought she was dying…and now the doctors think she is relatively stable, and could be for a while longer. That may also depend on how she tolerates radiation and chemotherapy. According to the doctors, brain radiation is fairly well tolerated…it doesn’t hurt and it isn’t as taxing on the body as other types of radiation. Additionally, chemotherapy is strictly oral, and again, supposedly well tolerated.
If my mom handles the radiation and chemo, it could buy her a bit more good time before the tumor grows into the basal ganglia. Shrinking the tumor and slowing its growth could relieve some of her symptoms, too. In that case, if she is a bit stronger and has some time, we may need to bring her to a house where she can have a room with a door, where she can rest when she is tired and move away from the noise of the house, and where there are also living areas for visitors to come and spend time with her. A house would allow her some privacy when she is dressing and using the toilet, or in need of an escape from the tumult. We would still need to hire some home health aides to help care for her.
If, however, my mom does not tolerate the radiation and chemo well, it will force us to discontinue treatment. In that case, my mom will not have much time left at all. If she is largely bedridden and unable to be seated in a chair or move around (or less interested in receiving visitors), then it may make sense to just bring her home to my parents’ house and set up a hospital bed in the living room.
At some point, we are going to have to talk to my mom more specifically about her prognosis. I’m not really sure when that will happen…all I know is that she needs to have hope right now. I suspect the doctor and/or the social worker will be doing that after we see how things go with radiation and chemo. She asked us early on to make sure that she participates in the decisions we make, and she wants us to make decisions together, as one voice, prioritizing quality of life first and foremost. That is how we decided to go ahead with the surgery. My mom wants to do whatever she can to get the most quality time she can get…but only if she can have quality time. Any treatments that are not bringing her more quality time…well, we won’t do them. It remains to be seen how radiation and chemo will fit into that goal.
We said goodnight to my mom around 6:00. Mona said her goodbyes because she is headed back to Texas in the morning. It has been wonderful for my mom to have her here all this time – she said it gave her spirits a real boost. I also appreciated having her around on Friday when my mom was so sick.
On a lighter note, Elliot and I are starting to prepare for our Rosh Hashana dinner at the hospital. As I type this, we have two different versions of my mom’s brisket recipe cooking on the stove, and Elliot is also cooking his grandmother’s turkey recipe. The two of us cooked these together tonight. We plan to bring all the food to the hospital and have a little family celebration. Hopefully, my mom can tell us if we got her recipe right!
And for those of you who have asked, my mother’s Hebrew name is Dvorah Chana bat Bruchah Leah.