9/11…a date that will forever be etched into the minds and hearts of all Americans. All day today, the question “Where were you?” echoed softly in the background…in the hospital, on Facebook, on the radio, on television. I have to admit…this year, I barely remembered the date. But as I’ve heard the soft mumblings throughout the course of the day, I, too, have taken a few moments to look back and remember.

On September 11, 2001, I was living in a small one bedroom condo in Foggy Bottom. I had just left my job a few months before, and I was taking a few college courses during my time off so that I could sit for the Patent Bar. It was a normal day…I woke up bright and early and took my dog Nugget for a walk. I quickly hopped in the shower and got myself dressed and ready to drive to Northern Virginia Community College for a 10:00 am class. I normally left around 9:30, and my normal route took me right by the Pentagon about 9:45. As I was finishing up my breakfast and starting to pack up for class, my phone rang…it was my mom.

Mom told me to turn on the television to the Today Show because a plane had crashed into the World Trade Center. We were stunned, and we sat there discussing whether it was an accident or an act of terrorism. My mom hung up a short while later, and I sat there glued to the tv. A short while later, I watched the second plane fly into the World Trade Center…and I knew what I was witnessing. I called my mom back to ask if she saw the second plane. I never did make it out the door to class that day.

When the news reported that a plane hit the Pentagon, too, she got nervous that I was in my car and somehow injured. And then the reports of all the car bombs started pouring in, and my neighborhood went on lock down. My mom was so worried about me at this point, she kept begging me to come home to Rockville. Finally, sometime around 12:00 when they were evacuating my neighborhood (I lived near the Watergate, the State Department and the IMF), I got in my car and started driving. It took nearly 6 hours for me to make the 20 mile trip home, and several days before I was able to confirm that my friends in New York were all okay.

Last night, my father asked me to come pick him up this morning and drive him to the hospital. His friends Steven and Gail planned to join us in the late afternoon, take him out to dinner and drive him home. Maya woke up a bit early at 8:00 am, but I was able to bring her in bed to snuggle and nurse. Once again, Micah slept until after 9:30. At 9:40, I realized I had not yet heard from my father, so I called him to see what time he wanted me to leave for the hospital. I think I startled him…he was obviously in a deep sleep, and I felt terrible for waking him. He told me he would call back in a little while.

As Elliot and I started our day making breakfast for Micah, ducking as he threw the food back at us (please tell me that he’ll eventually outgrow this stage?), and getting the kids and ourselves dressed, my father called back to say he would like me to pick him up around 12. Perfect timing! Once again, Micah was cracking me up today. At one point, Maya was in the swing crying while I tried to gather a few things together and finish dressing Micah. Micah started to point at Maya and say “baby,” and then he started to grab at my shirt, trying to lift it up and pointing to my breasts yelling “boobies.” He very clearly was telling me that the baby was crying and I should feed her, and he was insistent that I stop everything to take care of her. He is already becoming a protective big brother! At 11:30, we were all ready to go – I grabbed Maya and left to get my father while Elliot took Micah and went to services.

During the car ride up to Hopkins, my father and I did a lot of reminiscing, and very little of it was focused on 9/11. My father told me that I write beautifully (thank you, Dad), and asked if I planned on turning this into a book. For the first time in a very long time, my father and I had a real conversation. I told him that I had always wanted to write a book, and shared with him one of my ideas. As is the case when my father decides to focus and pay attention…he understood the concept immediately. He compared it to a “routine” that he does in his class, and I smiled to be having such a good interaction with my father. For a few moments, my father talked to me about my mother, and I told him I was worried about him. Naturally, he deflected the conversation to talk about our upcoming break fast celebration. We started to get sentimental over Yom Kippur and how our family has celebrated break fast over the years. My father told me that no one “gets” him like my mother…and I quickly agreed because I feel the same way.

My mom is so much a part of me…she is the only person who knows me completely, and can predict how I will react and think about things. She knows my likes and dislikes, and in an instant, from just the sound of my voice or a quick glance, she knows exactly what I am thinking. I think I probably know her almost as well, and sometimes we feel so connected that we don’t even need to communicate in sentences.

My Dad and I were talking about that connection, and I reminded him of the time I was in college, my freshman year, and I had a horrible night. I was up all night feeling agitated, and finally at 5:30 am, I called their house, certain that they would yell at me for waking them up. My mom answered the phone, and I told her that I couldn’t sleep because I was worried about her. She responded by asking me how I knew she had spent the night in the hospital with heart palpitations (this was just before she was diagnosed with mitral valve prolapse, a benign condition that gives her extra heartbeats).

I told my father that mom had mentioned wanting to get a dog. Up until now, my mom has been avoiding another dog because she said she could not handle loving and losing another one. She has often said that she will only get a dog when she is certain the dog will outlive her. I knew that was exactly what she was thinking when she told me she wanted a dog. I told my dad that since we wanted another puppy, too, when we all come home together, perhaps I would get a puppy and share her with my mom.

I then paused and asked him if he knew the story of “Snowflake.” My father shook his head, so I told him that way back when, my mom and I were chatting about puppies. We talked about how I always liked descriptive names for dogs (like Nugget because she was chocolate brown and miniature like Hershey Nuggets). My mom talked about wanting a little white fluffball and I mentioned something about getting a black dog. While we were brainstorming names for a black dog, my mom and I both started laughing as we simultaneously shouted out “Snowflake!” Not everyone would understand why we would name a little black dog Snowflake. You see, my mom and I hate winter, cold, and snow, and both of us were thinking about how snow (especially in New York City) turns black from all the car grease and grit. Then, we became hysterical thinking about walking the little black dog around, and having people say “How cute! What is your dog’s name?” and us responding “Snowflake!” We were laughing as we imagined the puzzled expressions that would run across their faces. Then, we became even more hysterical as we imagined them asking “Why Snowflake?” to which we planned to respond “Because she is black.” To this day, whenever we see a little black dog, one or the other asks “Do you think that dog is named Snowflake?”

When we arrived at the hospital, my mom was sleepy again. Her lunch was in front of her, and she was barely eating. I was worried about her, and tried to encourage her to eat a bit more. She complained that her stomach was hurting…apparently, she is having some bowel issues and has been quite uncomfortable. She kept insisting to me that she has been eating too much, and she thought that it was causing all of her problems. Most of the next few hours were focused on trying to make my mom more comfortable. The nurses tried some medications and a number of other treatments, but nothing was working. Dad and I went down to the cafeteria at one point while they tried to help my mom, and when we came back up, my mom called me back into the room. She asked me to distract her from her discomfort during the treatments by reading this blog and your messages.

So, while my mom was being treated, I sat there and read to her. Yesterday, your messages were all cheers, encouraging her to fight through physical therapy. She needed those words of encouragement. I repeatedly asked her if she wanted me to stop, but she kept shaking her head no. At one point, she complained about the pain…I told her that if she could talk me through pushing out a baby with no pain medication, I could be there to help her through this discomfort, too.

Finally, my mom started to feel some relief. I stepped back out because the baby was screaming and hungry, and they needed to clean my mom up and get her dressed for her occupational therapy. Donna, my mom’s nurse for the day, came out to talk to us. We thanked her for her help, and commented about how wonderful the nurses at Hopkins have been to us. We started to reminisce with her, and told her a few of our family stories. Here are a few that we shared:

1) Van Trip to Atlanta: At the end of my freshman year of college, my parents rented a van to drive down and pick me up. On the way down, Jeremy discovered that there were radio controls in the back seat where he was sitting. Over the course of several hours, he took it upon himself to…mess with Dad. Dad would put on talk radio, and Jeremy would change the station to rock. Dad would turn down the volume and Jeremy would slowly blast it. My father kept looking around, trying to figure out what was going on while Jeremy slyly pretended to sleep in the back seat. The entire time, my mom could see what was happening through the rear view mirror, and she never clued in my father. In fact, she made sure to yell at him a bit for good measure “What are you doing, Mickey?” Eventually, my brother couldn’t hold back the laughter and finally fessed up to what he had been doing.

2) Clashing Colors. For those of you who know my mother well, she is very particular about color. Small variations in color actually offend her eyes…she cannot stand when things that are meant to match are slightly different shades. I was about to leave for my first year of college, and my mother was making me crazy with all the color stuff. She did not like that my bed sheets did not match my tooth brush or some other weird point that I thought was ridiculous. I was feeling rather rebellious at the time, and my mother sent me and Dad out to Bed Bath and Beyond to pick up some milk crates for my room and some bath towels. Dad and I got there, and we quickly realized that there were a few different shades (probably different dye lots) of the blue milk crates…and we grinned at each other. We spent the next hour picking out 5 crates that were all clearly different shades of the same color. We then decided to pick out towels…and I decided that I did not want my towels to match. I picked out random shades of pink, blue and green (and to this day, I STILL don’t have a matching set of towels). We had such a great time…and laughed even harder when we came home and showed my mother our purchases and saw the look on her face. She kept trying to get us to return everything and buy matching crates and a matching towel set, but we were resolute in our refusal to do so.

3) Tapes. Donna, my mom’s nurse, mentioned that she used to record her children every year (back before the days when everyone had video cameras). It reminded me that when Jeremy was little, we had this little black and silver cassette recorder. Jeremy used to hit record and either tape the radio or hide it somewhere in the house to record people talking. I still have one of those tapes…he was in his room, listening to Michael Jackson on the radio. My mom comes in and explains to him that we are leaving soon, and asks him not to get undressed. She leaves the room, and my brother sits there singing along with the radio for another 5-10 minutes or so, and then my mom returns. She starts to tell him it is time to go, and then she lets out this long exasperated shriek of “Oh, Jeremy! I asked you not to get undressed because we are LEAVING now! Why did you take off your clothes?” Jeremy responds (and you can just *hear* how cute he was and imagine the little lopsided grin he gave) “I’m sorry, Mommy, I didn’t know.”

4) Wedding Crashers. Several times in the past few days we’ve told the story of how my parents met. You see, my father crashed Suzette and Joel’s wedding, and was seated at the table with my mother. The short version of the story is that my father was friends with Suzette’s cousin, Alan, and he needed a ride from DC to Scranton for the wedding. Alan had been staying at my father’s house for a few days, and he asked my father to drive him up and told him it would be okay to attend the wedding. The day after the wedding, a bunch of them decided to head up to the lake for the day, and my father had stopped off at my grandmother’s house to invite my mom. My grandmother practically pushed my mom out the door, and even loaned her a bathing suit. And the rest, as they say, is history.

Donna thanked us for sharing our stories, then had to head back to work. There is one other thing I’ve been thinking about today…pulling teeth. I told my mother a few months ago that she needed to practice her tooth-pulling skills. Many of you may remember that my mother was the resident “tooth-puller” – if any child we knew had a loose tooth, my mom was the only person around willing to yank it out. The tooth had to be fairly loose – she would test it to see if it was ready first. She would then have the child lay on her lap, and she would grab a washcloth or a paper towel, count to three, and then with one quick yank, there went the tooth. I always thought my mom would be yanking out my children’s loose teeth.

While my mom was in therapy, her friends Joan and Harold arrived, followed by Steven and Gail. We were able to bring my mom out to the family lounge for a while to chat. She was very wiped out today…she wanted me to stand next to the chair so she could lean on me, I think for comfort. After a short visit, she wanted to return to her room. Joan and Harold went back and had a nice long visit with her in her room, and I had a chance to chat a bit with Steven and Gail. Harold also came out to the family lounge to talk to me and my father and offer up some housing help to us…thank you so much for that. We will be in touch when we know what we need! I have to say, it has been wonderful to see so many familiar faces, and catch up with people I haven’t seen in so long – the one upside to this awful mess.

While I was talking to Steven and Gail, I expressed my concern that my mom is…giving up. She was very flat again today, and just doesn’t seem to have that drive right now. I still don’t know whether it is the cancer spreading and she is getting sleepier, or if it is simply the enormity of the situation hitting her and bringing her down.

Around 5:00, I went in to say goodbye to my mother for the day. I am hoping that tomorrow she will be feeling better and that perhaps some of her fight will come back. Perhaps the Provigil will kick in and boost her energy a bit.

All day today, I have continued to reminisce. My mom and I have a joke…I’m not certain how it started, but one day she thought it was funny to take the boring old phrase of “It’s me” and change it up a bit. Instead, she started to say “Hi, it’s Smee” (from Peter Pan). Over the years, I started to respond “No, it’s Smee.” My mother always ends our little routine by saying “How can you be Smee if I’m Smee?” The stupid little line always makes me laugh. Right now, it makes me wonder the exact opposite…how can I be Smee if she ISN’T Smee?

I think I often see the world through my mom’s eyes, and so many of the things I go and do, I also do for her. My mom has not had the opportunity to travel the way I have, and I often add elements to my trips so that she can live vicariously through me. When I went to Chicago a few years ago, I took the architectural boat tour there, mainly because my mom always wanted to go on it. I thought that if I could take pictures and tell her about it, it would almost be like she got a chance to go.

When Elliot and I were in South Africa for our honeymoon, we went to an elephant park to pet and feed the elephants, and I think the main reason we stopped there was because my mom told me that she wanted to see video of elephants. In fact, when we realized the video camera was dead, I made Elliot come back with me a second time the next day JUST so we could re-do the day and catch it on video for my mother.

Many people often mistake both my mother and me for serious people…but we both have this outrageously quirky side, that seems to come out most when we are together. We do the goofiest things. My friend, Tami, can attest to that…you see, my mom had this knack for getting into one of her silly modes…pretty much any time I was on the phone with Tami in high school. Back in high school, most evenings Jeremy hid up in his bedroom watching tv and playing with his video games, my father sat in his office working on orders or meeting with customers, I took over the family room, watching tv and talking on the phone, and that either relegated my mom to the kitchen, with the small black and white tv and another phone line, or forced her to sit downstairs with me. Our house was a split level house – the kitchen, living room and dining room are all on the main floor, and the family room sits half a floor below. Occasionally, my mom would come to the top of the stairs in the foyer and glance down at me sitting on the couch in the family room. Usually, by this time she would be dressed in her pajamas…a long flannel nightgown and these blue fuzzy dearfoam slippers. I would take one look at my mom…and dissolve in laughter. Her eyes would sparkle, and I knew that she would not be satisfied until I was laughing with her.

Some days, she would pick up her nightgown and start dancing, can-can style, at the top of the stairs singing “I’m Chip, I’m Dale…” If I remember correctly, those were the only lyrics my mother could remember from the Chip and Dale television theme song, and she’d “lalala” the rest of the words. Out of curiosity, I looked them up online today:

I’m Chip…
I’m Dale…
We’re just a couple of crazy rascals
Out to have some fun.
When Chip and Dale
Start cooking up some trouble
You can bet it gets well done.

Folks all say
We are the cutest two…
To tell the truth
I think so too!
I’m Chip…
I’m Dale…

Other nights, my mom would just sit next to me on the couch and start trying to tickle my one TOP SECRET tickle spot. Actually, she would start out by asking if she could tickle under my chin, or stick her finger in my ear. I’d look at her and say no, but the smile would start to creep across my face. She’d look back at me and say “But I wanna.” Again, I’d shake my head no. “Please, Tessie, just for a second.” Then she would tell me “I’m looking at your ear,” which always causes me to scrunch up like a turtle to protect my ear. I have this one sensitive spot on my ear…it is a bit odd, but I can sense people when they stand in a way that puts any movement on that spot, and it sends shivers down my spine. Even when I am asleep, my mom could wake me up and have me jump sky high just by moving her fingers in a spot near my ear, even a few feet away. She used to love to come into my room in the middle of the night just to see if I’d really wake up and jump…and I did, every time.

Tami hated when my mom would do that to me while I was on the phone…because our phone conversation inevitably had to stop since I couldn’t stop laughing. I always loved it…there is no one else on earth who can make me laugh like that. I love that my mom and I can communicate with just a look. And I love that she knows what I am thinking without me needing to explain. I can just be me (or Smee) 100% of the time with her…cranky, bitchy, goofy or philosophical. I think perhaps that is why I ended up with Elliot…he loves the goofy part of my personality that so few people really get to see, and I can share these stories with him and he thinks they are funny, too. Most other people would just think our jokes are…well, odd.

Not much of an update, right? It is now 7:00 am, and I have to put away the computer and get ready for the day to begin. We are going to try and attend a birthday party for one of Micah’s friends today before we head up to the hospital. I think my mom’s friends Arleen and Lorin will be visiting (and I’ve heard rumors they plan to bring Rayna, too, via Skype). I hope my mom is feeling better today, and perhaps a little perkier. Oh – and no new photos today – she just wasn’t feeling up to it. So, I decided to post one of my favorite shots of mom from the past few weeks – her sticking her tongue out at me while I snapped her picture.

First and foremost…I want to wish my niece, Paige, a VERY HAPPY 4th Birthday today. I’m so glad we had a chance to celebrate it with you a day early. I love you!

It seems that tragedy has a way of bringing out the best in people. I’ve heard this phrase so many times, but never understood it until this whole experience. I’ve been amazed by the offers of help and support – some coming from good friends and people who are strong presences in our lives everyday, but just as many coming from strangers, semi-strangers, or long-lost friends and relatives – people who just reach out to say they care, even though they may not be a part of our day-to-day lives. We’ve made connections with complete strangers in the hospital…people who sit next to us day after day in the lobby of the hospital with their children because they, too, are trying to juggle children while “keeping vigil” for their loved ones upstairs.

In the past, I always thought it was terrible to contact someone in the midst of a crisis such as this. I thought a call or a note during a time of great tragedy was…intrusive. I did not want to seem like someone rubber necking at an accident on the highway, or gawking at a train wreck. Instead, when I heard of terrible things, I would think “that is awful, my heart goes out to them, I wish I could help, but better not to intrude on their privacy.” I will never again think that way when I hear about tragic news. If I remotely know the person, I will offer up my words of strength, or offer to help, or just let them know that they are not alone and that there are people out there, even far away, who care what happens.

Because those words of support and kindness to us during this time have truly…well, humbled me. It means the world to me to know that people care, even people whom I haven’t thought about (or who haven’t thought about us) in years. It matters. It is wonderful to feel that strength and support and sense of community, and to know there are prayers of hope going out across every religion and faith… they sure can’t hurt, or as my mother says, “we’ll take it all.” In the future, I won’t hesitate to offer it ever again. I’m sorry for all the times I stayed back out of “respect” and didn’t offer the support, because for me, your support is empowering. I think this knowledge will forever change me…and hopefully make me a better person.

So, if you are out there reading this, or wondering what to say or if you should say anything, my answer is yes. It helps to know that this touches you and that you care about us. It helps to know that there are people out there pulling for us. Every little bit…helps. I wish I knew that many years ago.

The kids gave us a bit of a break this morning…we had silence until just about 9:00 am when Maya woke up, and Micah slept until almost 9:45. Our babysitter arrived at 9 again today, but we were unable to get Micah going until about 10:30. My father arrived around 10:45 to go to synagogue with Elliot. After everyone left, my friend Niki arrived with a stack of kid-friendly food for Micah (I’m hoping that will help us to get him to eat), and then I took Maya and headed up to Hopkins.

When I arrived at the hospital, mom was in bed, resting. She was sleepy again today – chatty, sharp, but sleepy. I helped her set up to eat lunch, but she didn’t have much of an appetite. We chatted for a while, and she asked me to read the blog again and all of your wonderful messages. When we discussed the blog, I told her I was amazed that she had so many lifelong friends, and she told me that friendships have to be “cultivated.” Another pearl of wisdom…I think I could learn a lesson from her in cultivating friendships.

Mom snuggled a bit with Maya, and then I sat and nursed while Mom and I chatted. She seemed a little flat…a little sad today. She said she had been thinking a lot about her funeral, and I cringed. She reminded me again that she hates the poem “Aishet Chayeil” (“Woman of Valor”)…something I already knew. She said that she would like to find something else to read at the funeral…and she mentioned that she loves the poem on the frame her co-worker Gonzalo brought last week. I was thinking about the song “You are my Sunshine,” but wasn’t sure if that was appropriate to say. She informed me again that she wants to take Nugget with her…and her hat that Sheila made. She also asked whether it is permitted to have a shofar blow at a funeral…she told me she was moved by the sound last night at dinner, and she thought it would be powerful to have that at her funeral, graveside. I told my mom we would do whatever she wanted, and that in my opinion, anything is possible. I know we need to think about and discuss these things, but I just hate hearing it, because I hope there is still much more time for us.

She again said she couldn’t believe this was happening…a number of times she said “How does this happen?” and “Who’d have thunk it?” She said she always thought she and my father would have more time together once she retired next year, time to travel and spend together. I could just feel her sadness for what she could be losing.

She started asking some questions again about GBMs. She said she had asked the nurse for information about GBMs so she could share it with people at work and her friends. I told her I had written a post with the information I found, and I read her most of the post I wrote a week or so ago. I tried to remove the truly negative information, but the whole discussion was a bit depressing.

After our chat, I redirected our energies to Maya, since she is always good for lifting the spirits. She was all smiles and laughing as Grammy kissed and tickled her. I thought we were back on track until my mom looked at her and said, “What will you remember about me? Nothing, right?” My eyes welled up, and I said to her that hopefully there was plenty of time left for Maya to form her own memories of Mom, but if not, I’d make sure she felt like she knew her. I’d show her all the pictures of them together, and videos, and I’m sure there will be an endless supply of stories. She’ll know that my mom always says “a million and nine” when she is picking a number to represent the term “a lot.” She’ll know that my mom says things like “same difference” and “6 of one, half a dozen of another” instead of saying things are the same or there is no difference. Maya’s world will be filled with pictures and stories of my mom, and her food, and her sayings, so she will be a presence in her life.

Once again, I deflected from the sad and tried to cheer my mom up. She was looking tired, so I sat down and got quiet so she could nap. About 10 minutes later, my dad arrived…and much to my surprise, he had Elliot in tow! Elliot, Maya and I stepped outside to give my mom a chance to rest before physical therapy (and catch up a bit with my father).

I joined my mom for PT around 3:00 (and Elliot brought Maya by for a bit, too, to cheer for my mom…he even held her up and in his best “Maya” voice cheered, “You can do it, Grammy!”). From my perspective, she has made some significant progress…she walked the length of the parallel bars 3 times, and she was standing. I asked questions about simple exercises we can do with her to build the strength in her left arm and leg when she is not in therapy. Unfortunately…my mom is having problems with PT. From the moment it begins, she says she is too tired to do anything, and every other word out of her mouth is “I can’t.” She always says she needs to go back to the room and take a bathroom break and a nap…I think maybe she is trying to avoid the PT. I tried to remind her that she is a strong person, and that she can do this. I know that she has always told us that you have to push through the tough things because the end result is worth it, and that you have to believe that you can. I can see that she gets scared…she thinks she is too weak, so she is afraid to try. She needs to believe that the therapists have her, and that they are pushing her because she CAN do it, and they will not let her get hurt while she is trying. So, Mom, when I read this to you tomorrow, hear me say to you that you ARE a fighter, and you HAVE to trust that you can push yourself. Each little bit that you do brings you more energy and strength – even when it feels like you can’t, you have to trust the process to get you to your goals. You have to go big, with everything you’ve got.

I’m especially concerned because they have informed us that if she does not start finishing her therapy sessions and pushing herself a bit more, they will have to release her early from Rehab. I’m worried because Rehab is the best chance she has to regain some of her strength – the at-home therapy just isn’t as good, and we need her stronger. Every day, that left arm is getting stronger, and I’m hopeful that if she can regain more strength, maybe we can get her crocheting again. The good news is that they are starting her on a medicine called Provigil (thanks, Elise, for the suggestion) so we will see if that helps her combat the exhaustion.

While Mom was in PT, her friends Suzette and Joel showed up. Elliot, Maya and I left to get home, and Mom visited with Suzette and Joel. I hear through the grapevine that her friends Diane, Joey and Arlene had a great visit later in the afternoon, too.

We made it home in good time, and Elliot made Micah dinner and then took Maya to services while Micah and I had some good mommy/son time tonight – something we both needed. I’ve been firmly planted on the couch catching up on the DVR while Elliot snores loudly across from me.

I guess I’ve just been feeling a little blue today…I’m worried about mom’s increased sleepiness, and I’m worried about whether she is going to have the strength to do radiation. I hope the doctors are right…but I’m worried. I don’t want her to be wiped out, and I only want her to undergo treatment if it will help…make her a bit stronger after it is done and buy her some good quality time. I don’t want this to be the end for her…but if it is, I want to make sure she can come home. How do you know when the time is right to fight, and when the time is right to let go? I hope that my mom is able to tell us, and that we are strong enough to listen to her. But I hope that if there is a chance this can work, we can help her choose to fight, and give her the strength when she is afraid she cannot do it herself.

So, tonight I am wallowing a bit. I am going to set the computer aside, watch some junk tv, pump milk that Maya can’t drink yet, and hopefully go to sleep at a reasonable hour. By tomorrow morning I’ll make sure to find my smile again, go to the hospital to spend time with my mom and cheer her on in PT, read this blog and your messages to her, and entertain our visitors – often the high point of the day. What is it that they say….lather, rinse, repeat? I just want to get through the next 4 weeks and bring her home…find a new normal.

In the next week, I want to make time to do the things I normally do this time of year…a trip to Butler’s Orchard to get my apples to make applesauce and pick up those delicious caramels (and possibly some other fruits), make blintzes, and perhaps bake a few pies. I hope to get back to playing mah jongg on Tuesday nights, and I’m looking forward to starting swim lessons with Micah. Next week is also Micah’s first week at Beth El Pre School…a big step in his life! So…here is to finding a new normal.

Once again, it is 5:00 am and I am just now getting around to typing and posting an update for Thursday, September 9. As my mother always tells me, I have my days and nights mixed up…it feels like Thursday night to me instead of Friday early morning. I guess some things never change.

My thoughts have been swirling, and today I am not certain where to begin. I want to talk about the kids and our day and how my mother is doing, but my thoughts keep moving back to friendship, and I have this need to “wax philosophic” for a moment. As we have been going through this nightmare, it has become evident that we are truly blessed to be surrounded by wonderful friends. My mom has a core group of true, lifelong friends that have been our mainstay throughout this nightmare, and I will forever be grateful. Her more “recent” friends are ones she has known 35+ years (or perhaps some only 15-25 years while she has been working at Montgomery College). Amazing, isn’t it? I’ve thought about how some of those friends came in and out of our lives over the years, but many have been a constant. Not everyone in this world is lucky enough to have friends like that, and many of my lifelong friends are because of my mom’s friendships.

While I have many good (and even long-term) friends, I have one lifelong friend who is all “mine,” not just a family friend, or someone I met through school or BBYO. There really hasn’t been a time we haven’t known each other. We have been terrible about keeping in touch over the years, but she is always there in the back of my mind, and we have a way of floating in and out of each other’s lives. I think about her during every major life event, even when she hasn’t been there. Every time I go to my parents’ house, I smile when I drive by the house where she grew up, and I think of our one big fight and laugh when I look at the tree on the corner and remember a time when a tire swing hung there.

I’ve been thinking about her so much over the past few months, wanting to talk to her, but not really sure how to call or what to say. I even “friended” her father on Facebook (can you believe I couldn’t find HER on Facebook!) a week ago, hoping perhaps he’d see what was going on and pass it along to her for me. But today, without even knowing my mom was sick, she felt an overwhelming urge to track me down again and reach out. I think perhaps our connection is so strong that she knew I needed to hear from her. We’ve always had the kind of friendship that years could pass without contact, but when we are together, nothing has changed between us. Her message to me was simple: “I miss you! Would love to hear how you are and what you are up to.” It was perhaps one of the best messages I’ve received throughout this process, so thank you, Biz, for finding me now when I really need you.

This morning (well, yesterday morning at this point), I posted my update and went upstairs to take a nap around 6:30 am, as has been my routine for the past few weeks. The kids woke up a bit later at 8:50, the babysitter arrived at 9, and Elliot got ready to go to services. It is Rosh Hashana, and for so many reasons, I decided not to attend services this year. Some are silly…I have nothing to wear since I just had a baby 2 months ago, and it has been almost 3 years since I’ve been not pregnant, not breastfeeding and a stable weight. I also did not feel like trying to manage a baby during services (Micah was a handful last year). Originally, my father planned to attend services with Elliot while I went up to Hopkins to spend the late morning with my mother. When we learned that they were doing her wheelchair seating and positioning evaluation at 10:00 am, my father decided to skip services and go to Hopkins instead.

While my father was there, it dawned on me that it was a good time to take a morning at home. We were planning a big dinner, Micah was coming with us, and I knew we would all be together until late. Suddenly, my urgency was gone, and I decided to let the morning unfold. I nursed the baby, I played with Micah, I assembled our things for dinner, coordinated food pickup with my cousin, Jill, and I even cleared a few things from the DVR. I responded to a couple of important emails (in case the Hopkins family housing doesn’t work out, Jeremy has been looking into corporate housing options for us near the hospital, and put me in touch with someone to try and figure out our options). Micah was funny…he was asking for some food, and she said to him “Say ‘please.'” As is appropriate, Micah responded and said, “say peas.” I still planned to get in the car by 11:30 or so to head for the hospital.

My niece, Paige, will be celebrating her 4th birthday on September 10th (technically today, since my updates are 24 hours delayed). We decided to combine our family celebration of her birthday with our Rosh Hashana dinner. For many years, I’ve been the official “cake baker/decorator” for the family, but my sister-in-law, Jen, did not want to put any pressure on me to make a cake during all this mess. Elliot and I discussed it, and he decided he could bake the cake while I was out the other night, so we told Jen NOT to pick up a store-bought cake for Paige, that we would take care of it.

Initially, I did not think I would have the patience or energy to decorate the cake. I thought maybe I’d simply ice it and write “Happy Birthday” and call it a day. I spoke to Jen and learned that Paige would love a Spongebob cake, so I thought that maybe I could use my edible image printer and do something simple for her. This morning, I went to check out the printer, but it was all clogged up from lack of use. I didn’t have the patience to try to clear it out right now, so I decided not to bother. As I sat and looked at the cake, I kept thinking…”Spongebob isn’t that complicated, I bet I could decorate this cake in an hour or two if the kids cooperate.”

Next thing I know, I’m mixing up icing, pulling the fondant out of the fridge, and reviewing decorating ideas on my favorite cake website. Maya was snoozing quietly in the swing, and Megan was trying to keep Micah entertained. I called Jen again, because I realized that, in all this chaos, I hadn’t even thought about buying Paige a birthday gift, either. She gave me a few ideas, and while I fretted about how I was going to get Paige a present, my babysitter offered to take Micah out to the toy store to pick it up for me. How amazing is that? Although I briefly felt like one of those people who send their assistants to go get a gift because they can’t be bothered, I quickly realized it was the only way. I’m loving my babysitter more and more every day – she has been incredible throughout this process.

While they were out, I managed to finish decorating the cake (while entertaining a few phone calls, including some wonderful news from a good friend). For once in my life, I have to say I was really pleased with how the cake turned out, and my niece loved it! I’ve posted pictures in the photo gallery for all to see. This web site only allows us to have 50 pictures uploaded, so I will have to start deleting some of the photos soon to keep adding new ones.

I didn’t manage to get out the door until almost 2:00. Much later than I had planned, but worth it. I arrived at the hospital to find my mom laying in bed. My father said she had been having a good day, and had even taken a few steps using the parallel bars in physical therapy! I wish I’d been there to see that. We also have Jeremy to thank for his role in that…they wanted my mom to wear a plastic support on her left leg, but we couldn’t get it to fit in her shoes. I sent a request to Jeremy to find her some Under Armour sneakers big enough to work, and he showed up at the hospital the other day with 3 different sizes of sneakers! We found the perfect size that fit with her leg support, and it is definitely making therapy a bit easier for my mom.

I thought my mom was looking very sleepy again, which definitely worries me. She hasn’t been eating all that well the past few days, either. My mom and I chatted, and I read her yesterday’s journal post and all of your messages. We had a guy come in to set something up for my mom, and he wouldn’t stop talking! Every time I started to read to my mom, he started chatting again. My mom and I were laughing because we couldn’t get him to stop talking. Maya got a bit fussy, so I stepped out for a bit to allow my mom time to sleep. Jeremy showed up around 4:30, and we hung out waiting for everyone else to arrive. Jen and the girls were running a bit late, and Elliot and Micah were running even later. Traffic was horrible, and Elliot also had to stop in Columbia to pick up a kugel, apples and honey, a challah and apple cake from my cousin, Jill, for our dinner tonight. Thank you, Jill – the food was wonderful! I think you must have my mom’s apple cake recipe – it tasted and looked exactly like hers!

Elliot and Micah finally arrived around 6, and we brought my mom down to the family dining room that they had reserved just for us. My mom asked me to take a photo of the sign on the door to post it for you all, so go check out the photo gallery. We all sat down together and ate brisket (my mom said it was perfect and it tasted just like hers!), turkey, kugel, challah, and apples and honey. My mom seemed to have a decent appetite, so that was good. We topped off dinner with some apple cake and birthday cake, and we shared the birthday cake with the nurses on the floor.

My mom was tired after dinner and asked to head back to her room. Before she went back to her room, the chaplain showed up to blow the shofar! It was actually wonderful for us to hear it (my mother said it was beautiful), and the kids thought it was a lot of fun. I do think that Rabbi Pohl always did a better job of blowing the shofar than anyone else I’ve heard in my years since attending services at B’nai Shalom…I miss seeing his face turn bright red while he pushes himself for that last tekiah godolah….

We said our goodbyes, rounded up the kids, and left my dad to stay behind with her a bit longer. It was a good day, but it was emotionally a bit tough. Jeremy seemed a bit broken up at a few points (although I think I wasn’t supposed to notice that), and Jen got a little teary after a heart-to-heart with my mom – I think their conversation was very similar to the one I had with my mom yesterday. During dinner, my mom turned to me and told me that I would have to do all the cooking now for family events, and that brought a few tears to my eyes. Thank goodness she taught me how to make blintzes years ago, right?

We made it home safe and sound, got the kids to bed, and tried to clean up, put the food away, and prepare for tomorrow. My dad plans to come down and go to services with Elliot in the morning. I still haven’t decided if I will head over there or not, but I think I’d rather take Maya and head up to visit my mom a little early so I can be home in time for dinner.

So…the snap shot update for the day: my mom tried walking, she is holding steady in her recovery, we had a wonderful dinner, and now we are planning to try an “old-fashioned” break fast at the hospital next week. We have the family dining room and lounge reserved, and we just discovered a HUGE courtyard on the floor for patient/family use that will be great for all the kids to use if the tumult in the family room gets to be too much, or if the kids just need to run. We haven’t been able to break fast this way in years, and I know what an effort it is for everyone to try and make this happen…but I’m so thankful that we are all going to try.

By the way, one story I forgot to share yesterday. The other day I was in the elevator, and a hospital employee was telling me how adorable Maya is. She then asked me what size clothing she wears, and mentioned she had an extra outfit in her office for a baby girl. She asked me where I would be at the hospital, and I told her I’d be on the rehab floor with my mother. Well, much to my surprise, yesterday she showed up with a beautiful outfit for Maya! I’m constantly amazed by the generosity of strangers.

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.

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!

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.

I have learned that life is short…and life as you know it can be upended in an instant. My world turned upside down on Memorial Day this year…and I didn’t even realize it at the time. From the time my mom left the hospital I had a nagging feeling that I was losing her. In fact, for months, I felt like I had lost my mom and she was right there in front of me. Over the weeks, I watched my mom suffer because she did not feel well…and no one seemed to be able to tell her why. For a week or two in late July/early August, it started to feel like she was coming back to us…until her balance issues started. Over the course of ten days before she was hospitalized at Suburban on August 21, I watched my mom deteriorate. But, it was that simple 24 hour period beginning around 5:00 pm on August 21 when I finally realized how my world would forever be altered.

Today was a difficult day for me. On the one hand, it was filled with so much happiness as we were able to share in the naming celebration of our good friends, Matt and Marisa, as they gave their daughter her Hebrew name. I found myself crying at so many points during that ceremony – sad that my mother was not able to be there (in fact, she was angry that we did not bring her outfit so she could join us, and even angrier when she realized we went without her) and sad that Maya’s naming ceremony a month before all of this tragedy struck will likely be the last time my children celebrate a family event with all four of their grandparents together. We were so touched today when Matt and Marisa mentioned mom during the ceremony, and so thankful to all of the people who came up to us to tell us that their thoughts and prayers are with us. It was a beautiful event, and we were lucky to participate.

While we were at the naming ceremony, Mona and Trenna visited with my mom at the hospital, and my mom’s co-worker, Jo, also stopped in to visit. I am happy to report she was headache (and nausea) free today! (Dr. Olivi even called us early this morning to let us know he had checked in on her and she was doing much better). The rehab unit had a “BBQ” on the floor…burgers, dogs, cole slaw, potato salad and cookies. They had a good time there. My mother spent most of the day in therapy…speech therapy, physical therapy, occupational therapy and recreational therapy.

After the naming, my brother, father, Suzette, Joel, Elliot, Micah, Maya and I all headed over to the hospital. We were joined there by Suellen and Greg and Gail and Steven. My mom was so busy with therapy that we had very little time to visit with her, although she was overjoyed when she got a few minutes with Micah and Maya on her way to therapy. I went with my mom to her recreational therapy where they had her playing circle solitaire. It was so hard to see my mom frustrated and tired by such a seemingly simple task…playing a game that she once taught me how to play more than 20 years ago. She found it challenging to turn her head and use the vision she has to find the different piles. She had difficulty figuring out how to count from 7 to 10, and she couldn’t remember the way the numbers on a clock worked. No matter what happens, this tragic disease has stolen so much already from my mother…things she can never get back.

After her therapy sessions today, my mom was exhausted. At one point, she turned to me and said “this is just so hard for me to do, Tess. I’m so tired, and I just want to go home.” (I’ll explain another day why my mom calls me Tess). It brought tears to my eyes, and I put my arm around her and said “I know mom, but it takes hard work to get stronger, and you can do this.” Before I left this evening, she asked me to gather her things together. When I asked her why I needed to pack them all up, she asked “Aren’t I going home tonight?” When I told her that no, she wasn’t, and she was supposed to be in rehab for 2-3 weeks, she looked devastated.

On a positive note, tonight around 9:00, I was sitting here, starting to write this blog, when the phone rang. I looked at the caller id and saw that it was my mom’s cell phone! My heart skipped a beat as I eagerly answered it. I waited a few minutes before my mom actually managed to get the phone to her ear and speak. She greeted me with her typical “Hiya” and said she just wanted to call me to say goodnight. She said that they had just given her meds, and she was going to bed. It was 100% my mom…as if there was nothing wrong at all. We chatted a few minutes and then I said goodnight and told her I would see her in the morning.

If you’d like to end on a high note, perhaps you should stop reading the rest of this blog post. Tonight, the sad is taking over, and I intend to share that here. Everyday, I sit here and read so many words of encouragement…and I appreciate each and every one of them. But, at the same time, I cringe every time someone tells us how my mom will “beat the odds” or shares a story about how someone they know with a different type of stage IV cancer went into remission. I know those words are meant as messages of hope, and I know that everyone just wants us to have faith and keep strong. But unlike so many other cancers, GBMs are fatal – they are not curable. Some people, who catch it early enough, or have them in locations that are fairly easy to remove surgically can have some really good time and years left – they live with cancer, but they are not “cured.” I know everyone is well-meaning and wants to give us hope for a happy ending…but it just hurts when I hear those comments, and I’m angry at the unfairness that my mom doesn’t even have a fighting chance to beat this disease. Because my mom IS a fighter, and I do believe that if there were odds of survival and cure, she could do it. My mom always used to tell us that “no one ever said life is fair.” Well, she is right, because this definitely isn’t fair. All we can hope for is a little more time, and I do hope for that with every fiber of my being.

Even if my mom becomes one of the “lucky” ones and manages to live another year or two (or even more), she has already been robbed of so much of herself. Her independence is gone…that went with her loss of vision, her loss of balance, and the loss of use of her left side of her body. Those are things she will never recover. She won’t be able to babysit her grandchildren, or crochet an afghan, or drive herself to dinner with her friends, or take off for a girls’ weekend, or any number of other things she loved to do. This disease has already destroyed so much of her brain that she will never be as she was even just a few short weeks ago. Luckily, this disease has spared her memories and her personality…she is now my mom, trapped inside a failing body.

And I am angry at the doctors who say finding it earlier wouldn’t have changed the outcome. To parody a Bill Clinton phrase, it all depends on what your definition of “outcome” is. As I’ve said before, I understand that if your definition of outcome is life v. death, then yes, finding this cancer back in May wouldn’t have changed the outcome. This GBM was fatal the minute it appeared in my mother’s head, and I understand that. BUT, if “outcome” is defined by quality of life and longevity, then I absolutely believe that finding this tumor back in May would have made a difference. She could have gone through surgery, chemo and radiation before she lost her vision, her balance, her strength and her ability to walk. She might not have needed to go to rehab at all, and she could have lived comfortably in her own home during this time, walking the stairs, doing the things she most enjoyed doing. I firmly believe that we could have gotten more of the tumor, possibly buying her a bit more time. If nothing else, my mom could have had more strength to fight and LIVE in the now. I also believe she would not have endured the past few months of misery, and I think that the time she had left would have been better quality time. So, hearing that the “outcome” wouldn’t be any different does not provide me any sense of comfort at all, because I am 100% certain we could have given her a bit more quality. And any doctor who says otherwise…well, just is choosing a different definition of the word “outcome.”

Each day, simple things in life make me realize what I will be losing when I lose my mother. And yes, I said when. I hear one of my mom’s friends pass on news of someone we know, and I realize that I will be cut off from the “grapevine.” I talk about planning a trip, and I realize that I’m not sure what I will do with my children when I go out of town. My mom is one of my best friends, and I rely on her for so many little things. She is my sounding board and my outlet. In times like these, she is normally the first person I would turn to for help…and I can’t because she is the one who is sick. I think of a million and nine inside jokes and little phrases that my mom and I say to each other, and I realize that there is no one else in the world who will understand what is funny about them. I miss having my mom call me everyday to say she is “touching base” to which I always respond “what base are you touching?” and my mom promptly laughs as we say “third base.” There is a story there…and probably no one else would appreciate the humor in it. I think about how she tells me she is going to get her hair colored, and I ask her what color, and she responds with “blue” while we both dissolve in laughter. I wonder who else knows enough about me to share my “small world” experiences. I start singing the song “You Are My Sunshine” to my children, and the words my mother used to sing to me when I was a small child smack me between the eyes…”You are my sunshine, my only sunshine, you make me happy when skies are grey. You’ll never know, dear, how much I love you. Please don’t take my sunshine away. The other night, dear, as I lay sleeping, I dreamt I held you in my arms. But when I woke, dear, I was mistaken, and I hung my head and cried.” I already miss my sunshine.

I am happy to report that while my little oatmeal fiend, Micah, and I sat eating breakfast this morning, we received our “morning update” call from my father. According to the nurses, she slept through the night, and they were just heading in to wake her up for breakfast. Seems like we may have cleared the hurdle.

We are all getting ready for a baby naming ceremony today (my mom was asking all day yesterday who was going to pick her up and take her). Mona and my cousin Trenna will head to the hospital this morning, and the rest of us will join this afternoon after the naming. Let’s hope for a great day today.

I’m sorry to report that today was not a good day. In fact, today was an awful day. The one thing several doctors have said to us is that this type of brain cancer is not painful…I was comforted knowing that my mother would not be in pain throughout this process. Unfortunately, today that just was not true. I hope she never has to experience this kind of pain and discomfort again.

Since Thursday, my mother has been complaining of a headache and increased pressure and squeezing behind her eye. I’ve been concerned that her intra-cranial pressure had been increasing. Since Thursday, I’ve been trying to talk to a doctor about it, but have not been able to see Dr. Olivi in person. The physician assistant said it was no big deal, and the nurses have not been passing along my mom’s complaints, and the floor residents have all basically done the “not my bailiwick” response and directed me back to the neurosurgeon.

This morning, my father called with his morning update and told me that mom had been experiencing nausea. After her hospitalizations in May and a few weeks ago, I knew that meant increasing intra-cranial pressure. I immediately got on the phone trying to reach Dr. Olivi. I tried several numbers I had for him, and none of them worked. I called my dad to see if he had Dr. Olivi’s card, and he did not. I called my brother to see if he had Dr. Olivi’s card, and he did not. As my brother and I were talking, he was looking at Dr. Brem’s card, and realized that his email address looked fairly standard (a first initial last name address). Jeremy suggested that I try using the same format for Dr. Olivi and see if we could reach him that way. I think about 10 seconds after I hit send on my email, my cell phone was ringing!

Dr. Olivi and I chatted for a bit, and he quickly reassured me that he has not been neglecting my mother. I mentioned that she had been experiencing increasing pain in her head and behind her eyes, and that I was concerned that her discomfort had escalated into nausea. I communicated that she was hurting, and had now been uncomfortable for several days and I felt that they needed to do more for her than just simply give her Tylenol. He indicated that he was aware of her increasing discomfort, and told me that he had authorized a few additional medications over the past few days to try and increase her comfort. He promised that he would be in to see my mother today, and would come after noon when we would all be there, and he would call over again to hear how she was doing and see what else he could do for her. He also told me that we would be meeting with the oncologist and the radiologist this week to discuss moving forward.

Elliot took Micah to services, and after speaking to Dr. Olivi around 11:00 am, I took Maya in the car and drove up to Hopkins. Our plan was that Elliot would likely bring Micah up to meet us after Micah’s afternoon nap. When I arrived at the hospital, my sister-in-law, Jen, was already there. My mother was extremely uncomfortable, complaining of severe nausea and pain behind her eye. I learned that the morning therapy session was cut short because my mother was in too much pain. We spent time putting cold and hot compresses on her head and neck, and we talked to the nurse and got her some more anti-nausea medications.

The nurse came in and informed us that they planned to take her down for another CT scan. They also gave her some additional medications…neurontin (for nerve pain…Nugget used to take that years ago for her back pain), tramadol (for her headache) and they increased her steroid (from 2 mg every 8 hours to 2 mg every 6 hours). About 30 minutes later, the nausea seemed to ease up, and my mom was feeling well enough to eat a little pasta and some carrots for lunch. They came to take my mom for the CT scan, Jen left to go home, and I took a quick break in the cafeteria.

When I returned, my mom was just coming back from her CT scan and her nausea had increased and her pain was through the roof. At that point, she started dry heaving. I was doing everything I could to make her feel better, but I was getting angry that they were letting her sit in so much discomfort for so long. I sent Dr. Olivi another email, and I asked to speak to the floor doctor.

My Dad and Mona arrived around 3, and my mom was in terrible shape. I was trying to hold the bucket while she threw up, wipe her brow, and nurse a crying baby all at the same time. Mona immediately took over caring for my mom so I could take care of Maya – she was a huge help all day today, and frankly, she did most of the dirty work today.

By 4:00, my mom’s nausea, pain and vomiting were all escalating, and I was livid. I asked the nurse to page Dr. Olivi, and I also asked to speak to the resident for the rehab wing. Initially, they said he was gone for the day, but they did reach him on the phone and got permission to give my mom some composine for the nausea. The composine finally arrived around 4:30…and that did absolutely nothing for her. By 5:00, I was furious. Jeremy and Trenna had arrived, and we were all quite concerned about my mom. Mona kept her cold hands on mom’s head, and we were taking turns helping my mom hold the bucket (in truth, Mona was doing most of the work…I took a few shifts, but the baby just kept needing to nurse all day long). Trenna helped collect the puke buckets and bring them in the bathroom and bring us out fresh buckets.

Jeremy also sent Dr. Olivi an email asking him to get in touch with us, and I sent a second email to him. We were getting extremely worked up by the lack of response. In the middle of all of this, my mom’s friend and co-worker, Gonzalo, arrived to visit. I felt terrible that she really was not in a position to have a good visit with him, but she was so happy he took the time to come see her. He brought her a beautiful little frame filled with flowers with a lovely poem inscribed around the edges. I read the card and the poem to my mom, and she thought it was beautiful. Unfortunately, Gonzalo couldn’t stay long because my mom was so sick. When he left, my mother turned to me (as she does EVERY time Gonzalo’s name comes up) and said, “I really like Gonzalo…he is such a kind man, and he truly is such a Gentleman.”

Finally, at 6:00, I got an email from Dr. Olivi saying he was unexpectedly diverted to Bayview for an emergency, but he would be in touch with us soon. It was almost 30 more minutes before the nurse came in to say that Dr. Olivi was on the phone. I went to speak to him, and he said that he was looking at the scans and he felt that my mom’s tumor had grown slightly, but it did not look like the “mass effect” (the swelling/pressure due to the tumor) had changed much at all. He said that her increased symptoms could have something to do with the tumor growth, but it could simply be due to the decreased steroids over the past few days…that my mother may not be tolerating the lower dosage. He said he was going to give her another 10 mg of decadrone to try and immediately reduce the pressure, and then he would be increasing her oral steroid dosage to 4 mg every 6 hours. He felt that she would quickly experience relief and then we would worry about trying to reduce the dosage a bit later. Dr. Olivi also assured me that he was sending over his resident, who would stay and oversee things until my mother was feeling better.

After our phone conversation, the nurse informed me that the rehab resident would also be in to see us shortly. Within 30 minutes, both residents were in the room, and there was a nurse on site to administer the decadrone and more zofran. The rehab resident also prescribed some reglan to help with the nausea. The rehab resident is also a doctor of osteopathy, and he spent some time manipulating and adjusting my mother’s neck to relieve some of the kinked muscles in her neck.

Finally, with the decadrone on board, and more anti-nausea medications…my mom started to feel better. It was such a relief to all of us! We did also get an apology from the residents and Dr. Olivi for taking so long to relieve my mother’s pain. When we finally left around 7:45, the pain in her eyes seemed to be improving, and the nausea was finally beginning to subside. We hoped she would fall asleep and have a good evening.

About 2 minutes ago, I received a call from my father with the latest update from the hospital. They said mom is currently resting comfortably! They said she does seem a bit confused (not really a surprise with all the additional medication they had to give her today), but I expect that will pass tomorrow. What a relief!

I’m hoping tomorrow is a much better day, and I am hoping that they can keep things under control with better dosages of the steroids. I don’t want my mother to have to experience another minute of pain…and I certainly never want her to live through a day like today again. Seeing her that way…and being able to do nothing to help her…was terrible. I am so angry and frustrated that the doctors let it get that awful. She has been progressively complaining about the headaches and other symptoms, and I wish they had acted faster to respond to her discomfort. I have been told they will be more proactive with monitoring her pain and will be more careful about reducing her steroid dosage in the future.

No pictures today…but perhaps I can snag a few tomorrow.

I realize that I’ve lost the days…I no longer know the day of the week or the date. For those of you who know me well, that isn’t much of a surprise, because even when I’m not in “crisis” mode, I barely have a clue about the date or the day of the week. But now, it seems the days all flow together – it is getting hard for me to differentiate one day from the next.

Today, our personal challenge was a last minute cancellation from our babysitter (not the one who started on Monday, but our regular sitter who worked with us all summer this year and last year). She had an emergency crop up and it was unavoidable, but I realize that I’m not coping with these types of unexpected bumps in the road as well as I normally would. After taking some time to panic about how we would manage the day, Elliot said he would stay home with Micah while I took Maya up to Hopkins to visit my mom. Thank goodness for the change in policy that allows us to bring the baby in to see my mom!

We kicked off the day with another visit from the Maryland Infants and Toddlers program, this time to evaluate Micah. It was actually an extremely informative evaluation – I learned a lot about Micah’s capacity to learn and process language, and they shared several techniques for helping him focus and for dealing with some of his recent behavioral outbursts. It was no surprise that they did not qualify him for any support services, but I was surprised to find that they evaluated him as slightly delayed (2 months) in his gross and fine motor skills but advanced in his language and social skills. They left us some great information about how we can work to improve his skills.

I think I’m sharing this information here because normally I would share it with my mother. For months, I’ve been batting around my concerns and frustrations with her, and she has always given me ideas about how to cope, where I should seek help, and to encourage me to trust my instincts. Ever since May, however, things just haven’t been the same, and I’ve missed having her talk me through the process and sharing her experiences raising us. During our visit today, I was able to give her an update about the meeting, and she seemed genuinely interested in the appointment, and glad to hear that we are on a positive path with Micah.

I arrived at the hospital around 12 today, and went straight to see my mother. I knew she had just been through three hours of physical therapy, and was thrilled to find her awake, dressed in regular clothes and sitting in a chair. She seemed alert and in great spirits, but her head was hurting again. She even told me she wanted to try to go to work on Monday (and gave me a dirty look when I explained that she could not go in on Monday). Once again, I spoke to the nurse about the head pain. I have to say I’m a bit concerned about her discomfort behind her eyes…I really wish a doctor would come and discuss it with us and explain why they are NOT concerned.

Maya and I spent an hour and a half with my mom. We chatted, I read her some of your wonderful messages, and she again told me that she wants to sit down and dictate a blog post to thank all of you for your wonderful support. I will try and make that happen this weekend. My mom had just enough time to eat her lunch before her next round of therapy arrived at 1:30. I decided to make a quick run to the cafeteria and then hang out in the family lounge. Before I left, the physical therapist explained the rehab process to me. As I understand it, today was largely about evaluating my mom and establishing her “baseline.” She will receive therapy at least 5 out of 7 days each week for three hours each day, and it will include speech, physical therapy, occupational therapy and recreational therapy. They will be meeting with us on Wednesday to discuss the goals and realities with us, so that should be an informative meeting.

A little after 2, my Dad and Mona arrived. The therapist ended up changing mom’s therapy time, so we returned to her room for another visit. She was starting to get a bit sleepy and wanted time to nap before everyone else arrived, so we decided to leave her for a bit and head back down to the cafeteria. While we were there, Diane and Joey and Suzette and Joel joined us.

We headed back upstairs, and mom was still doing well. They had put her back in bed so she could nap, but we all sat and chatted with her. We were there until a little after 5:00, and we decided to leave so that she could rest. Jeremy was unable to join us today, but he got to call and have a nice chat with my mom on the phone. Tomorrow, he is going to wait for our cousin Trenna to arrive and bring her to the hospital.

Actually, Jeremy and I had several good conversations today…laughing a little, crying a little, talking about our situation and our different ways of coping, and naturally, snapping at each other a bit (it would not be a conversation between us without a little bit of snark). We both wanted each other to know that we are here for each other, and understand. I reassured Jeremy that he needed to make sure he stays on top of things at work and that I understood that. In fact, mom had asked me to tell Jeremy that she wanted him to focus on work because she was “very busy and not bored at all” in rehab. He, like everyone else, tried to tell me that I should take more space and not come to the hospital as much. I explained to Jeremy that I *have* to be there…for me. I made it clear that I don’t expect that from anyone else, but I go for me. While I find it difficult to be there sometimes, I NEED to be there to soak up every minute I can, and it is harder for me when I’m not there. If she was in rehab near the house, I’d probably go back after putting the kids to bed, even if it was just to watch her sleep for a little while. I understand why others need breaks during these times, but I just can’t take that space right now.

I’m not sure that I have any “big” news to report – mom looked good, she seems sharp, she is anxious to do her therapy and start making progress, and it was great to see her in regular clothing again.

Despite all of this progress…I’ve been having trouble keeping the sad at bay the past 24 hrs. I seem to keep bursting into tears all over the place. Tonight, Micah saw me crying and came over and kept saying “Mommy eyes” and trying to touch my tears. He always has a way to bring a smile to my face, even though he just doesn’t understand. Elliot took Maya to services with him tonight so Micah and I could have a bit of alone time. I couldn’t stop laughing at one point when he took the oven mitts and put them on his hands and ran around the house with them. I found myself reaching for the phone, wanting to share the story with my mom…and then the tears came again. Luckily, Micah decided it was time to go to the potty (no, he isn’t really using the potty, but he likes to sit on his little potty and then throw perfectly clean toilet paper in the toilet, and I like to indulge him in the hope that it will lead to potty training). We also spent some time this evening looking out the window at a neighbor’s cat sleeping on the grill (I got a chorus of MEOWS from Micah).

I know tomorrow I will be heading back to the hospital, and I think it will be another busy day with visitors. I’m looking forward to seeing my cousin Trenna, who is coming into town to see mom. Wow…another long post for very little news.