Today was not a good day. To tell the truth, I am not even certain how to go about writing this entry. My father called to check on Mom again this morning, and the nurse reported that she had increased swelling overnight and was a bit more sleepy. From what my father said, it sounded normal and expected.
My friend Tami had come into town from New York to be with us, and she arrived at my house at 9:00. I asked Elliot to stay home for the day with Micah and the babysitter and let me go up for a few hours with Tami. I did not want to feel compelled to come rushing home in time to relieve the babysitter. My plan was to head up early and try to drive back no later than 4:00 pm to avoid traffic and give me time to spend with Micah for dinner and bed. I think Micah has had the roughest time throughout all of this – I’ve barely seen him for the past week. I often leave right after he wakes up in the morning, I take the baby with me, and I’ve missed his bed time almost every evening. I think he is starved for some good quality time with me, and I just don’t have the ability to give that to him right now.
When we arrived at the hospital, my mom was…well, not good. She nodded her head to acknowledge that she knew I was there, but she was not talking. I requested to speak to a doctor, and the neurology fellow came to speak to me. She was wonderful – she sat down and showed me the different scans, and explained to me what was happening. In short, my mom’s brain was swelling – far more rapidly than they like to see. Most patients by this point post-operatively are alert and ready to move off of the ICU, but my mother’s was becoming sleepier and deteriorating. As she explained, one of the biggest areas of concern was how her brain was swelling. She showed me that there is a midline between the right and left half of the brain. Prior to surgery, there had been some “midline shift” – a small portion of the right half of her brain was pushing over to the left side. The ventricle (a small pocket of fluid in the brain) on the right had been compressed then, too. They had hoped to see some of that relieved post-operative, but instead, more of my mom’s brain had shifted over to the left. The concern was that there is no room for the swelling to move, and that the fluid build up could start to push on her brain stem and impair her functions.
She explained that they had increased her steroids to try and reduce the swelling and they were putting her on a 2% sodium chloride solution to try and draw the fluid away from her brain. She explained that they would be watching her carefully, starting with medical management, and could need to escalate. She asked for consent to put in a central line so that they could increase her to a 3% sodium chloride solution if needed, and I gave it. She also explained that if things worsened, they might need to consider surgical options (such as draining the fluid or removing a piece of her skull to give the brain room to swell).
During our conversation, the doctor repeated numerous times that they were “very concerned” about my mother and how she was responding. She was clear that while some patients have an issue with swelling, this was not normal post-operative recovery, and they had hoped for better. At that time, she felt that my mom’s changes were connected to the swelling and they would reverse if we could reduce the swelling. After we spoke, I updated my father and brother, and we asked visitors to stay home – we felt that she needed some time and quiet to heal.
My mom’s friend Sharon called and asked to come by to visit. I explained to her that we did not think she should have visitors, but she asked to come by to see us anyway and talk to my dad. We agreed, and they came by. Jeremy and Jen arrived a bit after that. It was Jen’s first time getting to the hospital because they had been away (and my brother asked her not to cut their vacation short because he thought their daughters needed that time away). They were only able to spend a short time upstairs with Mom because they started the procedure to insert the central line.
Dr. Olivi then showed up to talk to us. He expressed his concern about my mother’s state, and he also said he felt that her condition was not just from the swelling – he felt the tumor was growing rapidly and destroying more brain tissue. He said he had to be somewhere else, and promised to return later in the day when my entire family arrived.
My father arrived shortly after Dr. Olivi left. Jeremy, Jen, Tami, my father and I spent the afternoon together. We actually had a bit of comic relief while we were sitting there. My brother was reading a web site, and he saw a note about a full-page Summer’s Eve ad about asking your boss for a raise. We joked about how it probably said “Don’t forget to douche” before you ask for the raise. Lo and behold…that is EXACTLY what it said. We were hysterical. We then read another article making fun of the ad, and the peals of laughter just continued. It was a much needed break from the sobriety of the day.
We were able to go up and visit Mom on and off after they inserted the central line. I had yet to hear her speak, but she spoke to everyone else. I actually told her that I was starting to take it personally! Sheila and Les and Suzette and Joel were asking to come visit, and we thought it would not be fair to them to come up – our plan was to leave right after we spoke to Dr. Olivi. They continued to ask, and we were discussing if they should come up while we were in the room with my mom. She started to nod her head, and we asked her if she was nodding because she wanted them to come up. She nodded again, so we sent a note to them and told them to come visit.
We spent the day waiting for Dr. Olivi to come talk to us – it was after 6:00 pm before he showed up again. He did an exam of my mother, and I was pleased to see that she was talking a bit and more responsive. She actually told him she was thirsty and asked for water. The nurse would not give her water because she failed her swallow test, but agreed to swab her mouth. Dr. Olivi kept asking her to squeeze his hand, and she said “Give me some water first.” We laughed because it was…well, it was MOM.
After his examination, he sat down with us and showed us her scans and explained everything to us. In short, he showed us what he removed, where the tumor was located, why he did not remove some parts of it. He also showed us where the tumor has continued to grow since the surgery, and he explained that it is one of the most aggressive tumors he has seen. The tumor is just exploding, especially in the area of her brain near the basal ganglia, which controls a lot of critical functions. He said that he felt her increased sleepiness and swelling was due to the tumor growth, not the surgery.
In short, he felt that mom’s time is quite limited…perhaps only days or weeks if the tumor keeps up its rapid growth. He said the goal was still to get her sitting up, talking and eating, and he hopes to be able to start chemotherapy and radiation. But, he also made it clear that it might not happen, and he would come to talk to us again if that is the case. In the best case scenario, we can get my mom some function back, time to talk and interact with us, and time to try radiation and chemotherapy. He felt that the treatments were unlikely to buy much time, though.
He reassured us that finding this earlier would not likely have changed the outcome or bought her more time because of the aggressive nature of the tumor. Needless to say, we are devastated. We had hoped for months, or maybe even years, but day by day, that hope seems to be fading. While the average life span for most people with this tumor is a year from diagnosis…it does not look like we will have that luxury because of the speed with which this tumor is growing.
What else can I say? After our conversation with Dr. Olivi, we kissed mom good night and went downstairs. We decided that Sheila and Les and Suzette and Joel should go see her. We’ve slowly started to spread the news, but we just don’t even know how to say this. We want to have hope…and we want to believe in miracles, but at some point, we have to live in reality, too.
This has been a trying time for us. You see, I’m the realist here – I focus on the pratical and the worst case scenario so I can cope. I always have to have a plan. I’ve been planning for my mom to come home – we’ve been searching for houses to rent that she can live in (one with a first floor bedroom) and juggling schedules and identifying care options. My father – he is the dreamer. He hears only the best case scenario and believes it will all be okay. He has a hard time listening to the reality. Up until today, he has been decorating the house so that it will be ready for my mom when she returns home. My brother? Well, he knows the reality, but prefers to deny and avoid it. His normal reaction is to run and hide – if he doesn’t have to see it or discuss it, maybe it doesn’t exist. To his credit, he has been PRESENT. He is fighting that urge to hide, and sticking it out day by day and really facing these tough issues. So, today was hard for all of us…I realized that my plans were pointless, my brother was forced to confront what he doesn’t want to see, and my dad heard some reality. So…today was not a good day.
I guess I sit here sad…and angry. I’m angry that we are all being robbed of time. That my mom will not get to see her grandchildren grow up, that our children will not get to have that special relationship with her that I had with my grandmother. My mom is so loving and kind and an amazing grandmother. They adore her, and she has so much to offer them. I feel like I’m losing my last connection to my grandmother – there is no one else who can share those memories with me and make her come alive to me. I don’t have any time to extract all the information in my mother’s head that she knows about our family that I never learned. I’m sorry that I didn’t have her show me how to make her brisket…holidays just won’t be the same without her brisket, which tastes different from anyone else’s brisket. I’m sorry I’m losing one of my best friends – there are few people in life that I feel comfortable leaning on, and my mother was one of the only ones. There is no one on this planet who knows me better. She is my anchor and my sounding board, and I count on her for so much. These past few months have been hard because I’ve been lonely without having my mother to turn to for support, guidance, and frankly, help. And today I realized that I will likely not get her back even for a short while. I had hoped for time to talk a little more, to have her record video messages for the children, and to have some photos and videos of her to cherish in the future. I had hoped for more minutes when we could just sit and watch tv, or to watch her eyes sparkle at something amusing. I wanted to see her sitting on the couch and smiling as the kids played. I just wanted…more. And I’m afraid our time is up.
So…it is now time to go back and put on a happy face, and hope for better news in the morning. Maybe the swelling will go down, and maybe she’ll be able to sit up and eat, and maybe we’ll get a few weeks to cram in…more. Maybe. I hope so. I just don’t know how to say goodbye.