L’shana tovah umetukah…Have a good and sweet new year. Tonight marks the start of Rosh Hashana, the Jewish New Year. In accordance with tradition, this is the time of year when we reflect on our past year, seek forgiveness from those we have harmed, and seek absolution for sins we have committed against G-d. Perhaps I should take the time to say here that if I have wronged you this year, I am sorry for that. The Jewish New Year is the time when G-d inscribes us in the “Book of Life,” supposedly determining our fate for the upcoming year. One of the prayers we say explains it all:
On Rosh Hashanah it is inscribed,
And on Yom Kippur it is sealed.
How many shall pass away and how many shall be born,
Who shall live and who shall die,
Who shall reach the end of his days and who shall not,
Who shall perish by water and who by fire,
Who by sword and who by wild beast,
Who by famine and who by thirst,
Who by earthquake and who by plague,
Who by strangulation and who by stoning,
Who shall have rest and who shall wander,
Who shall be at peace and who shall be pursued,
Who shall be at rest and who shall be tormented,
Who shall be exalted and who shall be brought low,
Who shall become rich and who shall be impoverished.
I’ve been thinking about this since my mom got sick…who shall have cancer…it seems awful to me to think that last year, while G-d determined that Maya should be born, s/he also determined that Grammy and Nugget should die, and that my mom should be struck with this horrible disease. It also pains me to think that her fate for the year to come is to be written and sealed in the next 10 days.
While I strongly identify with Judaism, I would not say that I subscribe to all the tenets of our religion, or believe in G-d or traditions they way they are prescribed. I cannot say that I believe in predetermination, or that things are set in stone, or that G-d writes it and it is so. But I like to think that everything happens for a reason…not necessarily because there is someone up there directing and pulling the strings, but maybe more that there is an innate order or rationale behind the chaos of the universe. Maybe Elliot and I conceived Maya so quickly because she needed to be born so she could meet my mother. And maybe the reason our family has been touched by this horrible illness is so that we can be moved to DO something about it.
As I mentioned in an earlier post, we bought brain cancer bracelets. My mom, Jen and I bought matching bracelets that arrived yesterday, and we are now wearing them. A few of my mom’s friends also bought the same one to show their support for my mom. In addition, we purchased one hundred grey awareness rubber bracelets that we will be sharing with friends and family. My father, Elliot and my brother have all started to wear them. We invite any of you who want to show your support to take one of these bracelets we’ve purchased, and wear it, too.
But, simply wearing a bracelet is not nearly enough. Jeremy and I have both said that this is now an issue that is near and dear to our hearts, and for the rest of our lives we will dedicate ourselves to doing something about GBM. One of the things I would like to do is to create an organization around GBMs. I’m still formulating this in my head, but I would like to found an organization to fight GBMs, promote awareness, improve the opportunities for early diagnoses, increase research on cures for GBMs, and help families facing this horrible disease. If I think REALLY big, I’d love to one day be able to say that we helped do for GBMs what Susan Komen’s sister did for breast cancer. Perhaps I am thinking too big, but over the next months and years, I will be working towards that goal, and I am announcing it here so that I can be accountable for DOING something. I have to make sense out of all of this…there has to be a reason that this has happened to our family.
I’m going to try and keep the update short and sweet, but by now you must be familiar with my tendency to ramble. On the home front, Micah has been pretty darn cranky lately. I would like to blame teething…but I think he just misses having me around. I’m going to try and find more time over the next few days to shower him with lots of love and attention.
Maya, Elliot and I drove up to Hopkins around 10:15 this morning so that we could attend the meeting with the Rehabilitation team. My mom was…well, sleepy today. She was completely together, and willing to talk when addressed, but she spent most of the day laying in bed with her eyes closed. When we arrived at the hospital, she had just returned from her radiation planning MRI. We held the Rehab team meeting in her room, and well…it was not all that interesting or helpful.
Ultimately, the rehab team seemed to be telling us that my mother was progressing very slowly (perhaps too slowly) and they felt she was too tired to really fully take advantage of the rehab process. My mom doesn’t really seem to want to fight through the hard part of the therapy, particularly physical therapy. We may need to talk to her about that, and it may be that we need to get there earlier in the morning to attend PT with her and cheer her on a bit more (previously, they asked us to stay away). They said they would try to keep her in rehab for the full time of her authorization (through Sept. 23) but they made it clear that if she stops progressing or if she gets sleepier, they will terminate her stay in rehab. They continue to work on safe transfers, teaching my mom safety techniques, and building her strength. They would like to start working on training those of us who will be her caretakers on the proper techniques.
Another issue that came up was napping – they emphasized that my mom needs nap time each day to help her strength, and they gave us a hard time about failing to give her sufficient quiet time. I actually took umbrage at that statement…we are well aware of her need to nap, and we try very hard to give her sufficient breaks to nap. Unfortunately, they bring her food tray over an hour late each day, and the nurses will not allow her to nap until after lunch. Because lunch is always late, my mom seems to miss her nap because lunch runs into therapy time. Yesterday, I went to the nurse’s station to advocate about this. When I mentioned it today at the Rehab team meeting, the nurse manager actually got snarky with me and insisted that the food is never late. I was quite irritated with her, said it a number of times, and told her that they either needed to get the food to my mom on time or push her therapy back, or allow her to nap before lunch, because the only people interfering with my mom’s naps during the week are the nurses, and the doctors who show up unannounced for meetings during her nap time.
After fighting with me a bit during the meeting, the nurse manager did follow up and learn that, in fact, lunch time for the Rehab floor had been changed to 1:30-2:00. Once she realized that she was mistaken, she actively got involved today with changing lunch time back to 12:30 for the entire Rehab unit. So, once again, I’m glad I pushed.
My mom has been craving a corned beef sandwich for the past two days, so today, Elliot and my father went in search of one. Luckily, they scored big, and my mom got her corned beef sandwich for lunch. Next time, she wants it deli sliced, perhaps kosher (because the kosher corned beef tastes the best), and a side of cole slaw!
Here is where things get interesting. I should back up and say that on the Friday after my mom’s surgery, the day we were worried that my mom might not be able to get better, I went to the food court for lunch. I ordered a veggie burger from Flamers, went back to my seat, took a bite…and realized that it was a turkey burger. I was livid. I went back to the restaurant, told them of the mistake…and they laughed. The manager there was not helpful, and reluctantly agreed to give me a refund. He only wanted to give me a partial refund because I had eaten the fries before I discovered the issue (and he didn’t want to refund the tax or the cheese on the turkey burger). Ultimately, with the help of a security guard and some intervention from my friend Tami, I got my money back. When I shared the story with Elliot, he was pissed and wanted to talk to a manager about all of this.
Well, Elliot has been working the manager route, without much response. Today, he reached out to a colleague he knows at Sodexo, explained the story, and he decided to escalate the complaint. A district manager covering Hopkins found Elliot, and wanted to try and make it right for us. Elliot made it clear we were not looking for any free food, but we wanted the staff dealt with and possibly re-trained. The manager was quite insistent that he do something for us, so Elliot asked if there was any way they could address the lack of timely food delivery to my mother, and that because tonight was Rosh Hashana and she would be eating alone, he asked if they could do something a little nicer for her.
Much to our surprise, the VIP food service arrived in my mother’s room. It is a high-end, a la carte kitchen service, mostly reserved for the rich and the mighty at the hospital. Well, apparently my mother has been upgraded to the VIP food service for the duration of her stay (and for whatever meals we are present, they will give us food, too). Once again, Elliot has pulled off something incredible, and I hope that it makes my mom’s stay more comfortable. So, in honor of the high holy day, my mom dined on…crab cakes tonight. Yes, crab cakes (and for those who do not know why that is ironic, crab is considered “forbidden” food in Jewish tradition, so eating crab for dinner on the high holidays…is well pretty darn ridiculous). So, hopefully, based on the nurse manager’s efforts and Elliot’s connection, the Rehab unit will be fed in a timely manner from here on out.
The only other useful thing that happened at the meeting was our chat with the Rehab social worker. She told us about some temporary housing run by Hopkins for patients receiving treatment. It is right across from the cancer center. Elliot and my father walked over there today to check it out, and put our name on a wait list. If we can get in there, it might be a perfect option for us to stay while my mom completes radiation. Once we see how she is doing, we can then make arrangements for where to go after she is finished.
While my father and Elliot were out, my mom and I sat and talked. She snuggled with Maya a bit, and we just chatted about a wide range of things…knitting, projects, updates, funny stories about Micah. I read her much of yesterday’s blog post (I did some editing), and I read her all the many guestbook messages, emails, and texts we received. My mom keeps saying that I need to write her a list of all the people who have written and offered help so she can write thank you notes. I can’t even manage to write the thank you notes for all the gifts we got for Maya’s birth and baby naming, so I have to say I just don’t see how I’m going to help her write the notes she wants. So, if you are reading this, please know that we are thankful for your help.
Then my mom became very quiet. I asked her what was wrong, and she said she was thinking…about the future. When I asked her to elaborate, she said that the doctor in radiology told her she would need to take things one day at a time. And our conversation continued:
“This GBM I have…it seems everyone is saying it cannot be cured, right? So that means we are talking about living with cancer?”
“Yes, mom, that is exactly correct.”
“So, that means that sooner or later, this is likely to end my life.”
“You never know what can happen, Mom.”
“But the odds are….”
“Yes, Mom, the odds are that it will likely end your life, sooner or later, but hopefully much later.”
“So, I’m probably not going to get to see my girls wearing prom dresses like I always thought, huh?”
“You never know, Mom.”
“But the odds are…”
“Yes, Mom, the odds are that you won’t get to see them in prom dresses.”
“I really thought that I’d get to retire next year, and have good years with Dad to go and travel and do things…”
“I know, Mom. It just isn’t fair. But you never know what you will be able to do. Do you want me to be a bit more honest with you? Jeremy and I stayed and talked to Dr. Holdhoff, the oncologist, yesterday after you left the room. We asked some of these hard questions…can I share some of what he said to us?”
“Please.”
“Well, he said the next few weeks are critical. He thinks that if you can get through the next 4 weeks of radiation and chemotherapy, and if you respond as they are predicting, the oral chemotherapy you will continue over the next 6 months should be able to hold the growth of this tumor at bay. You will then stop the medicines, and he says there is usually a window, sometimes of a few months, sometimes much longer, when you are medicine-free and there is no tumor growth. That is often another 3+ months. They will monitor you, and when there are signs of growth, we determine the next steps. So, he thinks that if we get through the next 4 weeks, there is a good chance that the next 6-9 months will be good months.”
“But then there is quality of life to consider.”
“Yes, Mom, there is. According to the doctor, during the next 6-9 months, with the exception of some possible increased swelling short-term, and some exhaustion, the next 6-9 months would have you at least as good as you are now, possibly stronger. So, for now we are focusing on the next 4 weeks, and then we’ll focus on the 6-9 months after that and see where we are. Once we see how things go, then we’ll know what our options are beyond that. I also asked the doctor about traveling. He said that once radiation is done, the only travel restrictions you have are how you are feeling. So, if you want to go places, we’ll make it happen.”
“6-9 months like this or possibly better sounds like an okay next step. And I can wait to see what we do next when the time comes. Traveling like this will be a challenge…but maybe we can do it. I just worry about losing my independence, and how we will manage living.”
“I’ve been thinking about that, too. I’m worried about trying to bring you home to the house. You are not mobile right now, and if we bring you home to the house, I think it would mean having you live in a hospital bed in the middle of the room, with no access to a bathroom or a shower – just sponge baths. I keep thinking you would be happier in a rental house, where we can all live together, where you could have your own room, close the door, use the shower, have an area for visitors.”
“Well, I think that sounds like a much better option. I want to try and keep some shred of dignity and have some privacy. I also want to be with the family…I think we need to be together to get through this.”
“Well, it is also selfish for me, Mom. I want to have snippets of time in the evening with you, and I want to have those moments for you to watch Micah running around in a diaper with tupperware on his head.”
“I want that, too. Look, Tess, I trust you. We’ve had many of these talks when Grammy was dying, and I know we are on the same page with what I want, and I know you will make sure that happens. I think Jeremy is on board, too. I’m just worried about Dad…he doesn’t want to think about these things.”
“We’ll talk about this as a family, Mom, and we’ll figure it all out together.”
“That is what I want.”
“The doctor also told us that Hopkins has the best longer term survival rate in the country…they have about 60% 3-6 year survival rate. They also have many examples of people who do beat the odds and live long-term. You are a fighter, Mom.”
“I don’t feel like a fighter. I kind of feel like Nugget…you know, really brave on the leash. I’m not so brave off of my leash.”
“Well, then we’ll have to figure out how to keep you on that leash so you can always be brave.”
“Can I ask you another favor? Would you be upset if I took Nuggie with me?” [Nugget died in May, and I had her cremated, with some reservations on my part. I’ve been uncertain what to do with the ashes ever since, and my mom and I have discussed it many times.]
“Mom, that sounds perfect. When that time comes, hopefully way down the road, I’m going to send Nugget with you.”
“When you come to visit us, you’ll have to bring a stone and a bone.” [In Jewish tradition, you bring a stone to leave at the grave of a loved one]
“Exactly…just make sure you give Nugget the bone.”
My dad and Elliot returned, and we cut off the conversation. Elliot and I had to leave shortly thereafter at 2:30 and my mom went to therapy. My dad hung around with her for a bit, and we raced home to meet with the woman from the Maryland Infant and Toddler program. I have to say, I think the meeting was a waste of time…yet another person who doesn’t seem to know how to help us with Maya’s sucking problem. She suggested we try the suck training again, this time with a different pacifier. Here goes nothing!
My father joined us for dinner tonight. We ended up having some quiche, some pasta salad, and some leftover salad and cake from the meals that everyone has been bringing. Elliot left for synagogue around 7, and my Dad headed home. When Elliot returned, I took Maya out to go visit a friend of mine who had minor surgery today. It was a wonderful visit – we had a chance to vent and talk and just catch up – it was a perfect escape for me.
Tomorrow is our family Rosh Hashana dinner, and I’m looking forward to it. I hope this year, only good things will be inscribed in the Book of Life for our family and all those friends, families and colleagues who touch our lives.