My day started with the phone ringing at 8:00 am. I have to say, I can’t stand when the phone rings at off hours anymore…it makes my heart skip a beat as a wave of panic that something happened to my mom washes over me. I happened to be in bed asleep, lulled by the sounds of Maya sighing softly from the pack ‘n play and Micah snoring over the monitor echoing softly in the room. I jumped up and snatched the phone, whispering a brusque “Hello?” and hoping that the phone wouldn’t wake either of the children. Much to my annoyance, it was the woman from the Maryland Infant and Toddlers Program calling to postpone our appointment. She asked if I could meet with her on Thursday morning, and without thinking, I agreed. Naturally, the minute I realized it was Rosh Hashana, I had to call back and cancel.
Right at 8:30 on the dot, both of the kids woke up. My father called a few minutes later to tell us that my mom was doing well and the oncology team would be by to see my mother around 2:30. Once again, our babysitter arrived right on time at 9:00. While she helped feed Micah breakfast and keep an eye on Maya, it gave me time to shower and get dressed. While I was getting ready, we got a call from Sheila warning us that a gunman was on the loose in Bethesda. I was nervous, so I insisted that the babysitter stay inside with Micah until the police caught the gunman…which I think made for a challenging day for her. While we were getting ready this morning, I put a NY Mets baseball hat on Micah in preparation for his father/son Mets v. Nats baseball game with Elliot tonight. I put on the hat and said “Mets hat” and Micah looked at me, said “hat” and “mess.” Elliot got all excited that Micah was already saying Mets, but I think he was simply saying the word “mess.” Lately, I’ve been spending a lot of time telling Micah he is a mess (usually after every meal, I smile and tell him he is a big adorable mess). He smiles at me and always says “mess.” I think when I put on the hat and said Mets, he thought I was lovingly calling him a mess in his hat, too!
Elliot, Maya and I left for the hospital around 10:45, and got there before 12. I went in to see my mom while Elliot took Maya to the lounge and got on a conference call. My mom was in physical therapy, and when I arrived, she wanted me to see the photo they had taken during therapy, and asked me to re-post it here for all of you! Apparently, during therapy this morning, mom hung out with the therapy dog, Graffiti, a whippet. I think that made her day! I walked back to the room with her, and she wanted me to send an email to Sheila to thank her for the hat again. She had worn it the entire night, and was still sporting it all day today.
When I arrived at the hospital today, I learned that my mom needed a second platelet infusion last night. Her numbers were now stable – right at 2. For now, they will just keep monitoring her levels and hope that things hold steady.
I was amazed, but Maya slept for several hours at the hospital, which gave me a ton of time to sit with my mom. She was exhausted, and we were under strict instructions to give her lunch and then have her take a nap. Unfortunately, as has been happening every day, my mom’s lunch was over an hour late arriving, and the nurses would not put my mom in bed until after lunch. While we were waiting for the lunch to arrive, first my father showed up and then the radiology oncology team arrived. We were a bit surprised, because we were not expecting any meetings with doctors until 2:30 (and the nurses said the oncology team was actually not coming until 3:30).
Dr. Kumar was the lead doctor who came to see us, and he works directly with Dr. Kleinberg, the head of the radiology team. The radiologists were quite helpful. They did an exam of my mom, and explained the process for radiation. They told us that my mom was scheduled for an MRI on Tuesday, which would lay the foundation for the radiation treatment. They explained she would have to get a few tattoos on her body to help with alignment, and that she would have a special hat made to help direct the radiation treatments. Because her tumor so extensive and they will be radiating so much of the right half of her brain, she may not be able to do a full 6 week course of radiation (it may be shorter). Radiation will be 5 days a week, and they expect she should tolerate it well. The biggest side effect is hair loss.
My mom was a bit nervous and worried about the process, but she asked questions, expressed her fears, and then signed the consents. The doctors took a lot of time with us going over everything, and we also had an opportunity to ask if the tattoos were really necessary.
Finally, my mom’s lunch arrived and she was able to grab a quick bite before her next round of therapy. I went to speak to the nurse because I was concerned that my mom was missing her daily nap time because her lunch was late every day. I asked whether her lunch could be requested earlier, or if they could adjust her therapy schedule by working in a later lunch time for her. Thankfully, the team was so cooperative, and they have readjusted her therapy schedule to start her afternoon therapy an hour later each day.
We were finally able to get her a bit of a nap after her next therapy session and before our 3:30 appointment with the medical oncology team. I have to say, Maya was being adorable during this time…she has been so smiley lately, and just sits there grinning and cooing at me. I think she is loving all of the attention she has been getting at the hospital. I’m always amazed by the number of people who stop and smile at her – she is quite the charmer!
While my mom was in therapy, my brother arrived to join us for the oncology meeting. We explained to him about the unexpected visit from radiology this morning, and we waited for the next team of doctors to arrive. He was a little upset he had missed the meeting, but it kind of happened unexpectedly, and we did not realize they were doing a full consult when they arrived.
Dr. Holdhoff from medical oncology arrived a little after 3:30. He said that Dr. Grossman was the head of the team, and would be meeting with us later in the week. At the start of our meeting, Dr. Kumar returned to share two new pieces of information with us: 1) they moved my mother’s initial radiation MRI up to tomorrow morning; and 2) they would not need to give my mother tattoos for the radiation treatment. We were thrilled to hear both pieces of information. We asked if the MRI could be done with my mom’s staples still in place, and he said no. Within minutes, they were arranging for her staples to be removed tonight!
Elliot had to leave a few minutes into the meeting so he could get home to relieve the babysitter. Maya and I stayed behind for the meeting, and my father agreed to drive us home. Dr. Holdhoff was wonderful…he explained the process of chemo (she will be taking one pill of Temodar a day for 6 weeks, then she will get a bit of a break, then she will do cycles of 7 days on, 21 days off for about 6 months). He talked to us about how the pill works (it inhibits the ability of the cells to divide). He discussed the side effects (most are rare, nausea is possible, but the greatest risk is for her blood counts, particularly platelets, to drop), and explained that they preemptively give a tablet of Zofran every day along with the chemo pill. They will closely monitor my mother’s blood levels, and if her platelets drop, they may discontinue the pills (at least temporarily). He also said that if my mother still experienced any nausea, they had other medical options to help control the nausea.
During our meeting, Dr. Holdhoff sat down with us and went over my mother’s scans, showing us where the tumor is, the size of it, and explaining how we hope the medications and radiation will deal with the remaining tumor cells. He talked to us about different trials and alternatives available, and how they will be managing the cancer from here on out. Jeremy also asked some great questions about alternative treatments (like accupuncture) that could augment the radiation and chemotherapy. He did not offer anything specific other than therapy (and said he would put us in touch with the oncology psychiatry liaison), but he said that he has heard about many people using alternative treatments such as accupuncture throughout chemo and radiation.
After the initial chat, the nurse and my father went back to my mother’s room, and Jeremy and I stayed to ask the doctor a few additional questions. Specifically, we wanted to know more about outcomes and prognosis. As I’ve said here many times, I am worried about trying to plan for the future…figuring out how much time we have, and how best to make my mom comfortable and keep her with us during whatever time she has left. As this doctor (and several others) said, it isn’t like humans have an expiration date on their feet. It is a guessing game. I again said that I was not looking for guarantees or promises, but I wanted to know where to set my expectations…what is reasonable to expect to see. I didn’t know if we needed to be thinking in terms of weeks, or if we could reasonably hope for months. I also wanted to know his best guess about the quality of that time, and how these treatments would affect her quality of life.
Dr. Holdhoff started out and said that if we did nothing but take her home, he felt she would only have 2 or 3 weeks left. He then said that she is young, had few health problems beyond the cancer, and had been in excellent condition until recently. He said that radiation should kill off more cells and inhibit the growth of the tumor, at least for a while. If she can tolerate the full course of radiation, and if this tumor responds as expected (and barring any complications), radiation alone could buy her several months of good time, like she is now or even a bit stronger. He felt that the combination of the radiation and the Temodar have been shown to increase the effectiveness of radiation, and could buy her even more time. The hope would be that we can reduce this tumor and inhibit its growth for at least the duration of the next 6 months of treatment, and then for a window of a few months after that. If all goes well, that would give us 6-9 months, and perhaps even longer if the tumor does not immediately start to grow when the treatment is complete. After the 9 month mark, there *may* be other options either to re-start the Temodar or try some other treatments or trials, and that could buy her some more time. So, today he gave us reason to hope that, if we can get through the next 6 weeks, we could have 6-9 more months, possibly more.
We learned that the average expectancy for survival for this type of tumor, when treated at Hopkins, has now jumped much higher since 2005. Hopkins is regularly seeing survival for 2-3 years, and sometimes longer. The biggest HOWEVER is that the survival rates are highest when the tumor is found before significant neurological impairments (like my mother is experiencing). The survival rates are much lower with the degree of impairment my mother currently has, but he told us he has seen people in far worse shape cognitively and physically survive long periods of time. He was very reluctant to encourage us to hope for time in terms of years, but he said it was possible. He was much more positive about the likelihood we could add months to my mother’s life.
Once again, we discussed how my mom initially got sick in May. This was the first doctor who told us point blank that had she been diagnosed even a few weeks earlier, and certainly back in May before the impairments really hit my mother, her odds of survival for 3-6 years would have significantly increased, and her quality of life during this time would have been vastly improved. He said that they tell patients who are in top physical condition that the average survival rate is about 20 months. He also said that is because she simply cannot qualify for many of the new treatments now due to the impairments – she is ineligible for many of the cutting-edge treatments unless she can walk and dress herself. Also, because my mom’s condition is now so extensive and advanced, when the tumor starts re-growing again after the first round of treatment, there is just less time to experiment with other treatments, and the deficits from the new tumor growth will be more significant than if she had no neurological deficits. Can I reiterate how angry I am that neither Montgomery General nor the ophthalmologist caught this earlier?
I also asked him about my mother’s quality of life during this time, and the appropriate setting for her. He said that we had a number of options, including nursing home care or keeping her at home. He said that we would likely need assistance at home, but that he felt an environment where she could have a room with a door (and the ability to go in and rest and get away from some of the noise of a household), access to a bathroom, and the ability to interact with family would be a good thing. He felt that putting her into a “hospice” type of situation (simply a hospital bed in a living room) was premature, and was far more limiting than what she needed right now, or for the next few months.
After Jeremy and I finished talking to Dr. Holdhoff, he went in to conduct an exam of my mother. He was impressed by her level of cognitive function, and he took some additional time to answer my mother’s questions. When he asked her if she had any other questions, she asked “When is my dinner coming?” As has been the case since she started taking steroids, food and mealtime is currently my mother’s most pressing concern.
We have put in requests to meet with the social workers from oncology and rehab to talk to us about some support options. We are also looking into some short-term housing options for us up near Hopkins for the 4-6 weeks of radiation (and we are entertaining the offers already made by several of our good friends). If all goes well, then we will look into renting a house down in the Bethesda/Rockville area with a bedroom and bathroom on the first floor, and we’ll take it from there.
My mother’s dinner arrived around 6:15, and then we all left for the evening. My Dad drove Maya and me home, and I brought him inside to give him some of the food we have been receiving. I put together a nice little meal for him to take home. I want to thank everyone who has been bringing food by for us – it has been a huge relief for me to just have food on hand at the end of a long day. Today, our friend Erica dropped off some quiches for us, and Betsy and Sam brought over a delicious pesto pasta salad that I ate for dinner.
This evening, I finally heard back from the woman from the Maryland Infant and Toddlers Programs, and she has arranged to come by tomorrow at 3:45 to work with Maya. Maya was wondeful tonight and went to bed at 9:45. I wish I could get her to go to sleep a little earlier, but I should probably just be thankful that she sleeps 10-12 hours a night. Elliot and Micah came home from the game a little after 10. Elliot and I took some time to catch up, and then I crashed on the couch for a few hours. I woke up around 2:30, and have been catching up on a few things. It is now almost 5:30, and I’m going to try and take another nap before our morning kicks off again.
So, the good news of the day is that they are doing everything possible to start the treatment as quickly as possible. My mother is currently stable and feeling great, and she is staple-free. On Wednesday, she will have her MRI to set up for radiation, and we will have our team meeting with the Rehabilitation team at 11:30. I’ll come home from the hospital on the early side so that Maya can meet with the speech language pathologist in the afternoon.
Many of you have asked our plans for Rosh Hashana. Tomorrow night, my father will join me, Elliot, Micah and Maya for a low-key dinner at our house. We’ve received several invitations to dinner…but we really don’t want to go anywhere without my mom. On Thursday night, we will do a bigger family dinner with Jeremy, Jen, the girls and my mother. We have reserved the family lounge and dining area, so it should be a perfect dinner. My cousin Jill has arranged for some holiday food for us, and Elliot and I cooked a brisket and some turkey last night to bring to the hospital. We’ll keep you posted!