What if?

The good news for the day is mom is holding steady. She has been moved to a regular inpatient room, and they are working to move her to rehab. Previously, we hoped to bring her closer to home for rehab, but because her stay in the hospital has been longer than anticipated, and because the cancer is more aggressive than expected, we are now trying to have her rehab at the hospital so we can start her radiation and chemo while she is doing her rehab.

Today was a quiet day in terms of visitors. Our cousin came up to visit and help with the baby, and my father, brother, DH and I were all there for a few hours today. DH and I showed up first around 12:15 (we had to take Maya for her 2 month checkup this morning - she did well, weighs 10 lbs 2 ozs, measured 22 1/2 inches, got 2 shots and an oral vaccine). My cousin came up to visit shortly thereafter, followed by my father and then my brother. My mom was a lot of fun today - cracking jokes and acting just like herself. She kept telling DH that she'd break his fingers if he stole her food (she makes fun of him for eating so much). I love watching her "hassle" the nurses about giving her the shots and not letting her eat good food. We talked to the nurses about getting permission for her to see her grandchildren, and we are hoping that in the next day or two they will allow us to take her off the floor and to a location where we can bring the kids for a visit. I think that will do more for her than any medicine. She has been in great spirits, and is resolved to work hard to get better. DH and I only stayed until 4 because we had to get home to relieve the nanny.

In the past 2 days, she has had physical therapy, occupational therapy and speech language pathology evaluations. All have concluded that she would benefit from rehab. Physically, she is weak on the left side of her body, and she has a problem called hemianopsia - it means she has lost the left half of her vision in both of her eyes. The combination of vision loss and weakness has been affecting her balance (it is also possible that the tumor affected other balance centers, but we are hopeful it is just due to the vision loss and weakness). She will need physical therapy to build up her strength and work on her balance.

Occupational therapy will help her with safety awareness and coping mechanisms for handling her vision loss and her weaker arm/leg. She may need to learn new techniques for opening things, and techniques to maximize the use of the good vision that she has. There may also be technologies that can help her cope.

Finally, speech language pathology has concluded that there are no issues with her speech...but she is facing some challenges with language and cognition. Sometimes, she is slow to recall the proper words for things. Her more complex cognitive functions are a bit slower - things like remembering multiple step directions or repeating items on a long list are a bit harder for her right now. Therapy should help rebuild and sharpen some of those connectors.

We've been told that right now, her brain is like a computer...when you have too many programs open, it can sometimes slow it down. We have been encouraged to limit the distractions when she is trying to focus - so if she is eating, turn the tv off or limit conversation. When she is talking to people, turn off the tv and try to limit side conversations. We are supposed to allow her to focus on one thing at a time so she can maximize her capacity.

So...one more hurdle cleared. Next step - building her strength up so she can handle chemo and radiation. Let's hope she has enough time to get there.

On a side note, while I sit here trying to be positive...I'm still really ANGRY. I can't stop thinking about all the "what-ifs." My mom always tells me that the "what-ifs" can make you crazy, but...what-if? What-if the first hospital had caught the tumor and we could have done this surgery and started chemo before she lost her ability to walk and see? What if 3 months ago, the cancer had not penetrated as much as her brain and surgery could have removed 90% of the tumor, making her eligible for the chemo wafers? What if we started attacking this tumor before it became so aggressive? What if catching it earlier couldn't give her a single extra day of life, but it could have given us more time to enjoy the time she has left, or better quality of life? What if getting a diagnosis in May prevented her from thinking she was crazy for 3 months? Being sick without a diagnosis took a horrible toll on my mother, and she was frustrated that she couldn't do anything about it. Every time I think about that, I get angry. Angry that the first hospital released her without a diagnosis. Angry that the unexplained nausea did not trigger a CT scan sooner. Angry that the ophthalmologist who examined her eyes in June, and again in July and August didn't recognize that the changes he was seeing as intra-cranial pressure and send her to a neurologist. Angry that no one picked up on her weakening left side. Why is it that these medical professionals missed it for so long? I have to think that catching it earlier could have given my mom more of a fighting chance - removing more surgically, taking advantage of the chemo wafer protocol, starting radiation and chemo before the tentacles of this tumor spread and burrowed deep into her brain...more.

As my mother always says, that and $.50 will get you nothing. But...what if?

Emotionally spent...

Once again, I'm lucky to be able to share that today was another good day for my mom. Her eye is looking much better and she was alert and talking all day today. Dr. "Suave" is working to move her to a regular room for rehab and hopefully to start her radiation. They took her off her insulin drip today, inserted a PIC line and removed her central line all in anticipation of that move. Physical therapy and occupational therapy stopped by today to work with her, and they even had her standing up today! She will begin with a daily PT and OT schedule from here on out. All we need is for her sugars to stabilize and they should be transferring her!

We also had a few visitors today - my Dad's cousin and my mom's friends. We spent the day rotating in and out of her room, and everyone took a shift watching Maya for us. DH and I had to leave around 4:00 today to get home to relieve our babysitter/nanny at 5:00. Today was our nanny's first day (she has previously babysat for us, so Micah already knew her well), and she certainly experienced a bit of trial by fire. She arrived at 9:00 and we were in the midst of our evaluation for Maya (the good news is she qualified for services!). We immediately put her to work feeding Micah and dressing him, then sent them out the door in Micah's stroller to "do something." While they were out, we left for the hospital, and she had to figure out how to find everything in the house and manage Micah for the day. Luckily, she was wonderful...and she even emptied our dishwasher as an added bonus. I hope she can handle all this chaos, because we really need her right now.

I am doing my best to balance all of this new optimism with reality. Dr. "Suave" still feels this tumor is extremely aggressive and they are working so hard to get her into rehab at the hospital and start the radiation as quickly as is feasible because of that.

That is it for today...relatively short and sweet. I'm a bit emotionally spent...I'm going to try and turn off my mind and "veg out" while I catch up on the DVR.

A glimmer of hope

What a day! Today was a day filled with emotion...a visit from old friends, new milestones for my mom, and signs of improvement. It is hard to believe on a day like today that my mom could possibly be losing a battle with cancer.

We started our morning around 8:00 am when Micah woke up. Amazingly, Maya slept until 9:00 am - 12 hours! I called my father first thing this morning and learned that my mom had been moved to the less intensive half of the intensive care unit. After dealing with breakfast and nursing and dressing the kids, the four of us headed out to the hospital to visit my mom.

DH dropped me off in front of the building to visit with my mom while he searched for street parking, loaded the kids into the stroller, and grabbed me breakfast. When I arrived, my SIL was already there giving my mom swabs for her mouth. They were just putting her into a chair, and I thought she looked even better than yesterday. They had given her a bath and cleaned off her hair, and her swollen and bruised eye was looking better today.

My mom was far more alert and talkative, and she seemed much more...herself. She was no longer accusing anyone of trying to kill her, and she was far more understanding about what was happening. They had reduced her saline from the 2% solution down to the normal .9% and they had reduced her dosage of steroids from 10 mg down to 6 mg. They did also add an IV insulin drip to try and regulate her sugars, and that was working wonderfully. Don't get me wrong - she was still complaining loudly about the feeding tube and her sore throat, but today she understood why it was there and that it would remain there until she passed her swallow test. She was doing more to try and cope rather than fight with the tube.

My father arrived a bit later, and at first, the nurse was being strict and wouldn't allow all of us in the room with her. My poor father was relegated to the waiting area. Determined to bend the rules, I made nice to the nurse and worked the guilt angle...and she finally agreed that my father could join us in the room, too, as long as we promised to behave and keep it down. I stayed with SIL, my dad and my mom for about 40 minutes or so. My father came downstairs with me to keep me company while I nursed the baby and ate my breakfast, which allowed DH a chance to spend some time with my mom. My brother arrived shortly thereafter.

And then the day kicked into high gear as the "troops" descended on the hospital. What is amazing to me is that my mom has a very large circle of friends that she has known since her childhood. Their friendship has lasted over 60 years, through thick and thin. Some years, they make it a point to get together frequently, and other times...well, years can pass and they don't find the time to visit in person. In times like this, however, they show up. So today, 2 of my mom's childhood friends arrived with their husbands, and two local childhood friends joined them.

It was quite emotional for me to see them all again. We used to visit with them a few times a year growing up, but it had been four years since we last saw them. One of my mom's friends brought pictures of my mom from their childhood - including pictures of them in Canada one summer. I know how much that trip meant to my mom because she took us on the same trip for our family vacation in 1987 - one of our best family vacations. I remember her telling me some of her childhood memories from that trip, and it made the vacation even more special for me.

My brother, DH and I stayed downstairs with the kids and sent the "gang" upstairs with my father to see my mom, and SIL headed home to take care of her girls. About 15 minutes later, some other local friends arrived for a visit as well. They first spent some time entertaining my children before heading upstairs to visit, too. Over the next few hours, we rotated in and out of the room, visiting, chatting in the lobby, getting food at the food court - it really was a wonderful visit. At one point, someone came out to get me and said my mom needed me. I was a bit worried, so I dashed in there...only to learn that she wanted me to scratch her itchy head because she likes the way my fingernails feel! My mom was doing great - clear, sharp and strong. She was chatting up a storm, sharing memories, telling stories - it was amazing. At one point, my brother played a video message he recorded from his daughters, and my mom grinned from ear to ear! She was so excited that she was talking back to the video - I really hope we can set them up to Skype soon.

DH left around 3 to take Micah back home, and my friend also arrived to watch Maya for me. Just as I thought things were going well...they got better. The Speech Language Pathologist FINALLY showed up to do my mom's swallow test...and she PASSED!! To steal my brother's facebook status, "I never thought I would be glad to say the phrase, 'my mom swallows.' Well guess what she does....and that means improvement."

My mom's childhood friends and my brother all left while they were removing my mom's feeding tube, but her neighbors stuck around for a bit longer and we went back in to see my mom. She perked up ENORMOUSLY, and was so excited to drink water. They offered her graham crackers to eat, and my mom was in heaven!

While my mom was eating and drinking, we were watching some of the pictures on the digital picture frame my brother had put together. There were so many childhood photos there that involved our neighbors and their children, which got us talking about the past. One of the pictures in the frame they sent me one summer while I was at sleepaway camp - it was all the kids acting out "Barzie and the Indians." For those of you who do not know our neighbor, Barzie was the name of his dog growing up. Thanks to his amazing storytelling skills, Barzie sort of became...well, a folk legend. There was a Barzie story for everything...Barzie fought the Indians, Barzie put out fires, Barzie saved lives, Barzie had a bar mitzvah...it did not matter the situation, he could create a Barzie store to match the event! As we discussed Barzie and the Indians, he turned to ask my mom if she remembered Barzie stories. My mom deadpanned and looked right at him and said "No." I could see the concern flashing across his face as she paused another moment before she said "I specifically asked the doctor to remove that portion of my brain." We all had a good laugh, and smiled because it was just a perfect instance of my mother.

The neighbors left after that, and I went downstairs to nurse the baby while my father and my friend took their turn to visit with my mother. My friend left a little after 5, and my father and I hung around to help my mother eat dinner and took turns watching the baby and visiting my mom. My mom asked me what was next, and I told her the goal was to get her strong enough to move to a regular floor, then off to Rehab and Radiation and Chemotherapy. She said she had heard that we moved, and expressed concern that we would do something drastic without consulting her. I told her that the only move that had happened was that she moved across the hall in the hospital, and I again reassured her that we would make no major decisions about anything without consulting with her. I pointed out to her that we'd been in the hospital all week that we couldn't have moved even if we wanted to do so!

While I was up in the room with my mom, Dr. "Suave" came by to see us. He said he was thrilled to hear that she passed her swallow test as he anticipated, and he asked how she felt to be eating again. He told her she was doing great, and mentioned that he was trying to arrange for her to start radiation while she was in Rehab. I noticed he had gotten a haircut (it was shaved close to his head), and he said yes, he did it because he wanted to look like my mother. Then he mentioned to her that he noticed she had a black eye and he was sorry about that. She quipped back that she gave him permission to operate, but didn't remember anything about agreeing to the black eye. He immediately responded and said "Well, you wouldn't listen to me so I had to hit you." We all had a good chuckle, and then he left us so that my mother could eat dinner. Turned out, my mom did not need our help for dinner- she did just fine feeding herself.

My father and I said goodbye to her after dinner, and he drove Maya and me home. Another long and draining day, but filled with signs of hope and lots of love. It is days like today when I start to believe in miracles, and think that maybe the doctors are wrong and my mom is going to trounce this tumor. And then I worry that if me, the realist, is reaching for a miracle, my father must be on cloud 9 believing that the worst is behind us. We need more days like today...but it makes the days like Friday so much harder to handle. It is so difficult to find that balance between hope and realism, to embrace the joy while steeling ourselves against the pain to come.

And did I mention that I got my mom's brisket recipe today? Another small victory.

Where do I begin?

I've been MIA from this blog for nearly 2 months. So much turmoil in my life, and I have so many half-written posts that just never made it to publication. One of these days, I'll go back and finish those posts and fill in the missing pieces of my last two months.

But today, I come to blog for a different reason. You see, my mother is dying.

Background

My mother is a loving, caring and LOVED woman with a husband, 2 children, 2 children-in-law, and 4 grandchildren (Paige, Peyton, Micah and Maya). My mom has always been an involved parent and grandmother, and we all turn to her for her help and support. She has been the "go-to" babysitter for the grandchildren, and is always there at the drop of a hat to do anything that we need. At least until Memorial Day 2010.

I blogged a little bit about this before, but my mother has been sick. On Memorial Day, my mom was fine. She had been feeling tired after a rough week at work, and she decided to accept my invitation to attend a BBQ so she could visit Micah and play with a family friend's new puppy. While she was getting ready for the BBQ, she suddenly felt nauseated and violently ill. My father called 911, and an ambulance took her to the hospital.

Over the course of a week, she was at the hospital. They suspected a virus, then an infection, then pneumonia, then a problem with her stomach called gastroparesis. It took tons of medication, but they finally managed to control the nausea with a drug called Reglan. She was released from the hospital with no diagnosis, and told to go see other doctors. Over the following months, she sought help from an endocrinologist, a cardiologist, a gastroenterologist, an ophthalmologist, and a hematologist. Test after test came back normal. The only diagnosis she ever got was that she was anemic. After two iron infusions (the first of which she received the day her granddaughter, Maya, was born), her anemia was cured, but she still felt sick. She was sleepy and did not want to get out of bed. She started to lose too much weight and was looking weak and frail. Everyone thought that perhaps she was experiencing depression, so off to the psychiatrist she went.

With a little medication, my mom thought she was starting to feel better. She started to make an effort to go out more, and she was trying to get back to "herself." After a few good weeks, she started to develop some balance issues - she became unsteady on her feet. Initially, she thought the balance problems were a side effect of the Reglan, so she stopped taking it. Each day, her symptoms worsened and she started falling and hurting herself. On Saturday, August 21, 2010, we became quite concerned about the balance problems and felt it could not wait until her neurology appointment the following week. So, here is where this new journey begins:

Saturday, August 21

On Saturday, I called to check on my mom around 5:00 pm. My father answered the phone, and immediately I could tell something was wrong. Initially, my father insisted everything was fine, and handed the phone to my mother. I asked her how she was and why Dad sounded so off, and she informed me that she kept falling and cracking her head. Actually, she informed me with...irritation in her voice...that Dad kept "dropping" her and he gave her several large goose eggs on her head, and that he was annoyed because he couldn't go run any errands because he was worried she would hurt herself.

I offered to go over with the baby and sit with mom while my father ran out. I arrived around 4:45, and went upstairs to the bedroom to hang out with her. Shortly after I arrived, my mom needed to go to the bathroom, so I helped her up. I was amazed by how much she had deteriorated over the prior few days - she could barely stand and walk, and couldn't get to and from the bathroom (or balance on the toilet) without significant assistance. She kept leaning towards the left when she walked, and the way she moved her left arm looked...wrong. It was as if she kept missing her mark with her left arm. I was very worried that she wouldn't be able to safely stay at home before her neurology appointment on Thursday.

I spent the next few hours trying to convince my mother that she should go to the hospital. I called a friend of mine who is a neurologist and asked whether we should go to the ER, and she suggested that an earlier workup wouldn't hurt. Our family friend stopped by to see the baby around 7:30 or 8, and together we convinced her that a trip to the hospital was the best option - to get a full workup and have all of the scans run before her appointment later in the week.

It took us about 1 1/2 hours to get her dressed and out to the car. Poor Maya - she was so upset and shrieking and screaming in her car seat while we took care of my mother. We arrived at the hospital around 10 and the ER staff would not allow me to bring the baby back. Luckily, my house was minutes away, so I ran home, nursed the baby, and left her with DH. I hoped that she would fall asleep and make it through the night (since she is unable to drink from a bottle).

They did a quick evaluation and ordered a CT scan to see if any of the falls had caused injury. Around 1:00 am, they came in to tell us that the CT scan showed swelling on the brain, indicative of a tumor. We were told we would meet with a neurosurgeon, and we specifically requested the neurosurgeon who had previously operated on my father - Dr. "Amazing."

Shortly thereafter, the PA for Dr. "Amazing," came by to do an evaluation. He explained that my mother had a tumor in her brain and the pressure and swelling had caused my mom to lose the vision in the left half of each of her eyes - a condition called hemianopsia. He said that, and the weakness on the left side of her body, likely caused my mom's balance issues. At that time, he indicated that the tumor could likely be malignant.

He put in orders for a CT scan with contrast to delineate the tumor and an MRI with contrast for the morning. I ran home at 3:00 am to get some food for all of us, and returned around 3:30. I met my mom and dad in my mom's ICU room, and my father and I stayed until 4:15 am. Because of the late hour, I brought my Dad home with me, and he spent the night on our couch.

Sunday, August 22

It was a long day. We got a call around 8:00 am asking my father to come by to sign off on some consents, so he left my house and went to the hospital early. I decided to wait a bit at home, and asked my father to call when the doctor arrived. My brother arrived at the hospital as early as he could get there - SIL and the girls were headed off on vacation, and my brother was due to leave for a trip to California, so he had planned to bring his dog down to leave at my parents' house while he was away. He stopped there first to leave the dog and pick up some clothing and medicine for Dad.

I arrived at the hospital around 9:30. We were initially told that Dr. "Replacement" would be by to talk to us. We spent all day waiting - waiting for tests, waiting for doctors - just waiting. My mom was in the ICU, and no children were allowed there. Luckily, there was an ICU waiting room on the floor, and we were able to keep the baby there all day. DH came and went a few times with Micah, and two of my friends came by for a few hours each to sit with the baby, and six of my parents' friends came by to sit with us. After a long day, no doctors showed up at all. Instead, we were told that Dr. "Amazing" would be by in the morning to talk to us.

As the day progressed, I grew impatient. As is typical of me, I wanted information, and quickly, so I called my friend, Dr. B, who is a neurologist. She trained at one of the top hospitals in the country and she currently runs a neurology critical care unit at a local hospital, and she was able to come by the hospital. We gave her permission to review mom's records, and she informed us that my mother's tumor was the worst possible tumor - likely a glioblastoma. She told us that the neurosurgeon would likely recommend de-bulking surgery to reduce the tumor, followed by radiation and chemo. She asked for permission to bring a copy of the scans to work in the morning and get a second opinion from her neurosurgery colleagues. She said that there was always a chance that the tumor would appear to be a glioblastoma, but could always be something more treatable, like Lymphoma CNS.

Needless to say, we were devastated, although we continued to hope that Dr. "Amazing" would bring us other news in the morning.

Monday, August 23

August 23...my birthday. Forever the day I will remember as the day I learned my mother had cancer. Once again, it was a long torturous day. My mother was sent in for more testing, and we spent all day waiting to talk to a doctor. I got a call from my friend Dr. B around 8:00 am with the recommendation from her neurosurgeons - skip the de-bulking surgery and go straight to radiation. I was devastated by that news - it sounded to me like they were saying my mother had no time left.

My brother had spent the night at my parents' house with my father, and the two of them had arrived bright and early at the hospital at 6:00 am, hoping to catch Dr. "Amazing" first thing in the morning while on rounds. My brother had run home the night before to put his daughters to bed before they left for vacation. He also canceled his trip to California and had packed all of his stuff so he could spend the week down with us while they were out of town.

We were told Dr. "Amazing" would be in around 9:30 or 10:00, so I raced over in the morning with the baby while our babysitter took care of Micah, and DH took care of Maya. Around 11:30 or so, DH walked over to the hospital with the baby so I could nurse her again. He was only able to stay a short while because our babysitter had to leave at 1:00, so DH raced home to be with Micah and I kept Maya at the hospital. Our babysitter's younger sister came to the hospital to sit with Maya while we continued to wait for the doctor. Over the course of the day, family friends stopped by again to visit (and found themselves on baby duty).

It was nearly 6:00 pm when Dr. "Amazing" finally came in to speak to us. He very carefully informed us that my mom had a substantial tumor, likely cancerous. He talked about the different options, and suggested that debulking surgery would buy us some time. At that point, he suggested that we transfer her to another hospital for the surgery. As he explained it, the surgeon was merely the "technician" in this circumstance...what mattered was the protocol, and the surgeons at the other hospital worked in tandem with the neuro-oncology team, and would understand how best to surgically lay the foundation for the oncologists to execute their job. He suggested we see a Dr. "Neuro" who would work closely with Dr. G, the oncologist. He set in motion the transfer, and back to waiting we went.

In honor of my birthday, DH had baked me a cake. We asked the nurse if we could put my mom in a chair and have her sit in the ICU waiting area with us so we could have dinner together, cake, and time with the grandchildren. Our WONDERFUL nurse arranged the entire evening! We ate some food from Panera, chocolate cake for dessert, and my mom was able to hold the kids on her lap and sit with us.

Amazingly through all of this, my mom was more herself than she had been in months. She was chatty, smiling, and her sense of humor was back. It was good to see my mom again, and despite the bad news of the day, it was a good birthday.

Tuesday, August 24

Another long day...I think there will be a lot of these from here on out. With the news that my mom was sick, our phones were ringing off the hook (and emails lighting up) with offers to help...food, babysitting, visits to the hospital - everything. That is one thing I am amazed by - the volume of support we are receiving.

Once again, we had our babysitter arrive at 9:00 to take care of Micah. I had arranged for my mom's friend to come help me out at the hospital that morning (she asked what I needed, and I said babysitting!), but knew I couldn't get there until close to 10:00 because we had an initial intake evaluation for Maya for state infant program. I suggested that my mom's friend go over a bit early and visit with my mom, and promised to be there as quickly as I could. During the intake meeting, Dr. "Amazing" called, and he said he had gotten through to Dr. "Neuro" and my mom had been accepted into their program. He expected her to be transferred later in the afternoon.

Around 9:45, my mom called me in a panic - she said they were coming to transfer her, and she was afraid they were taking her and none of us were there. I asked her if she had seen her friend yet, and she replied that she had not. I called my mom's friend (who thought my mom had been sleeping) and she quickly went into my mom's room to sit with her. I did my best to wrap up the intake meeting quickly and head to the hospital.

When I arrived, my mom's friend came out to watch the baby. My father and brother arrived shortly thereafter, and we all waited together for the transport. I think it was 12 or 1 before they finally showed up. My Dad decided to head up with my mom in the transport, and my brother and I followed behind. We decided that we would stay at my brother's house for the evening so we could get back to the hospital with little effort in the morning. After the transport took our parents, my brother went back to my parents' house to get clothing and medicine for my father and to pick up his dog. I went home to spend some time with Micah and get my things together, too.

DH and I decided that we would pack up the kids and we would all go together. It was nearly 3:30 when we left, and finding the building was quite the challenge. When we arrived, we learned very quickly that the hospital is not exactly child-friendly. DH had to sit down in the lobby with the kids while we were upstairs - it wasn't exactly a comfortable environment. Luckily, DH remember the DVD player with several episodes of Sesame Street to keep Micah entertained. We traded back and forth with the kids and took turns up in the room with my mom.

We were joined at the hospital by two more of my mom's friends. We were able to speak to the surgical resident and the chief resident of the neuro critical care unit. Dr. "Neuro," the neurosurgeon, also came by to meet with us, and explained that he would be unable to perform the surgery because he was leaving town. He recommended that Dr. "Suave," his 2nd in command and the head of the brain tumor program, take over the case. Dr. "Suave" came in to meet with us, and he went over the information with us. We talked about surgery, and my mother was able to express her wish that while she wanted to live and she wanted to fight this tumor, she also wanted to come out of surgery a whole person - herself. She explained that she wanted both quality and quantity of time, and she was afraid of coming out of the surgery...not herself.

Dr. "Suave" was very understanding, and he promised that he would do everything he could to respect her wishes. We were told surgery would be in the afternoon. Shortly thereafter, we said good night to my mother and we headed to my brother's house for the evening. DH and I went home first with the kids - it was nearly 10:00 when we got there and put them to bed. My father and brother stayed until my mom returned from her MRI.

Since the girls and SIL were at the beach, Micah slept in one of my niece's rooms, and I put Maya in her car seat in the other room. When my father and brother arrived home, my dad took over my brother's bed, DH took the couch, my brother took the basement, and I decided to sleep in the room with Maya.

Wednesday, August 25

We all woke up around 7:30, but we did not arrive at the hospital until 9:30. Once again, we had gotten a worried call from Mom because she was told that surgery had been moved up to 11:00 am. DH stayed at my brother's with Micah, and we took the baby to the hospital with us. Two of my parents' friends had offered to come up in the morning to help watch the baby while we sat with my mom. We met with Dr. "Suave" again, and then we started the wait for the surgery.

Because my mom's surgery was scheduled after another surgery, they could not give us an exact start time. I think the waiting and worrying is the hardest. Around 12:00, they came by to tell us the first surgery was complete and it would be less than an hour before they took my mom back. We met with the anesthesiologist, and an army of doctors and nurses. My mom talked about her poor reactions to anesthesia, and they developed a plan of action to try and keep her from vomiting post-surgery.

Unfortunately, it was nearly 2:00 before they finally came to take my mom back. We kissed her and wished her good luck. She was in good spirits, but definitely worried. By that time, we had a small army of visitors. They spent the day chasing my children around while I...to be honest, I'm not sure what I did. I think I fielded phone calls, and talked to doctors, and worried. I do think, however, the Micah had a wonderful day - he played with toys, and he had a whole lot of attention showered on him. At 3:00, we were informed that they were just starting the surgery. At 4:50, we were told they were finished resecting the tumor, but had to close Mom up. Shortly thereafter, Dr. "Suave" came down to talk to us.

The news was not good - he said the tumor was malignant, aggressive and pervasive. Apparently, it had invaded the entire right hemisphere of her brain. He felt he was able to resect about 40-50% of the tumor, and he felt we had a good chance that my mom's function would return to her pre-surgical state. Because they were unable to resect more tumor, they did not implant the chemo wafers in her brain. We talked about her survival, and he said that the average time for this type of tumor was a year, but because of the aggressive nature of her tumor, he felt we would be on the shorter side of that. Dr. "Suave" also said he would stick around to see my mother wake up so he could check her neurological function and he would talk to us again later.

It was a long wait, but we finally got back to see Mom around 6 or so. She was awake and talking, and we felt good about things. We said good night, and we all decided to head home. Erik and Jack were waiting for us downstairs with the rest of our family friends. Two of the friends offered to drive my father back home (since his car was still at the first hospital), and DH and I decided to head back home.

Thursday, August 26

One day post-op, and my mother seems to be doing well. My father called to check on her in the morning, and we were told she was stable and talking. My babysitter arrived at 9:00 am, and we decided to take our time going up to the hospital so that my mom would have more time to heal before we invaded. DH and I packed Maya into the car around 9:45 to take her for a doctor's appointment. It was supposed to be her 2 month checkup, but it didn't quite work out that way. Dr. "Suave" called with an update while we were in our appointment. He seemed quite pleased with my mother's progress - no sign of a stroke, normal speech and vocabulary, and he felt she was quickly returning to baseline. He was hopeful that she would be moved out of the ICU the following day.

Meanwhile, back at our pediatric appointment, we were told to come back next week for Maya's checkup so that we could discuss her swallowing issues and get her vaccinations. The doctor we saw confirmed she had a cold and a yeast infection, and told us to watch her closely and use lotrimin for her yeast infection. She seemed more concerned with the fact that we were taking up more than the 10 minute slot they had alloted for our appointment than anything else.

After our appointment, we drove back to the hospital. My brother and father met us there shortly thereafter. My mom was alert, coherent, and talking, but extremely groggy. Her speech was a bit garbled, but we were relieved to see that she was still Mom, and knew we were there. We did have one visitor who was able to pop in and say hello to Mom. We decided to leave after only a few hours and let Mom rest.

Friday, August 27

Today was not a good day. To tell the truth, I am not even certain how to go about writing this entry. My father called to check on Mom again this morning, and the nurse reported that she had increased swelling overnight and was a bit more sleepy. From what my father said, it sounded normal and expected.

My friend had come into town from New York to be with us, and she arrived at my house at 9:00. I asked DH to stay home for the day with Micah and the babysitter and let me go up for a few hours with my friend. I did not want to feel compelled to come rushing home in time to relieve the babysitter. My plan was to head up early and try to drive back no later than 4:00 pm to avoid traffic and give me time to spend with Micah for dinner and bed. I think Micah has had the roughest time throughout all of this - I've barely seen him for the past week. I often leave right after he wakes up in the morning, I take the baby with me, and I've missed his bed time almost every evening. I think he is starved for some good quality time with me, and I just don't have the ability to give that to him right now.

When we arrived at the hospital, my mom was...well, not good. She nodded her head to acknowledge that she knew I was there, but she was not talking. I requested to speak to a doctor, and the neurology fellow came to speak to me. She was wonderful - she sat down and showed me the different scans, and explained to me what was happening. In short, my mom's brain was swelling - far more rapidly than they like to see. Most patients by this point post-operatively are alert and ready to move off of the ICU, but my mother's was becoming sleepier and deteriorating. As she explained, one of the biggest areas of concern was how her brain was swelling. She showed me that there is a midline between the right and left half of the brain. Prior to surgery, there had been some "midline shift" - a small portion of the right half of her brain was pushing over to the left side. The ventricle (a small pocket of fluid in the brain) on the right had been compressed then, too. They had hoped to see some of that relieved post-operative, but instead, more of my mom's brain had shifted over to the left. The concern was that there is no room for the swelling to move, and that the fluid build up could start to push on her brain stem and impair her functions.

She explained that they had increased her steroids to try and reduce the swelling and they were putting her on a 2% sodium chloride solution to try and draw the fluid away from her brain. She explained that they would be watching her carefully, starting with medical management, and could need to escalate. She asked for consent to put in a central line so that they could increase her to a 3% sodium chloride solution if needed, and I gave it. She also explained that if things worsened, they might need to consider surgical options (such as draining the fluid or removing a piece of her skull to give the brain room to swell).

During our conversation, the doctor repeated numerous times that they were "very concerned" about my mother and how she was responding. She was clear that while some patients have an issue with swelling, this was not normal post-operative recovery, and they had hoped for better. At that time, she felt that my mom's changes were connected to the swelling and they would reverse if we could reduce the swelling. After we spoke, I updated my father and brother, and we asked visitors to stay home - we felt that she needed some time and quiet to heal.

Another one of my mom's friend called and asked to come by to visit. I explained to her that we did not think she should have visitors, but she asked to come by to see us anyway and talk to my dad. We agreed, and they came by. My brother and SIL arrived a bit after that. It was SIL's first time getting to the hospital because they had been away (and my brother asked her not to cut their vacation short because he thought their daughters needed that time away). They were only able to spend a short time upstairs with Mom because they started the procedure to insert the central line.

Dr. "Suave" then showed up to talk to us. He expressed his concern about my mother's state, and he also said he felt that her condition was not just from the swelling - he felt the tumor was growing rapidly and destroying more brain tissue. He said he had to be somewhere else, and promised to return later in the day when my entire family arrived.

My father arrived shortly after Dr. "Suave" left. We actually had a bit of comic relief while we were sitting there. My brother was reading a web site, and he saw a note about a full-page Summer's Eve ad about asking your boss for a raise. We joked about how it probably said "Don't forget to douche" before you ask for the raise. Lo and behold...that is EXACTLY what it said. We were hysterical. We then read another article making fun of the ad, and the peals of laughter just continued. It was a much needed break from the sobriety of the day.

We were able to go up and visit Mom on and off after they inserted the central line. I had yet to hear her speak, but she spoke to everyone else. I actually told her that I was starting to take it personally! Four of my mom's friends were asking to come visit, and we thought it would not be fair to them to come up - our plan was to leave right after we spoke to Dr. "Suave." They continued to ask, and we were discussing if they should come up while we were in the room with my mom. She started to nod her head, and we asked her if she was nodding because she wanted them to come up. She nodded again, so we sent a note to them and told them to come visit.

We spent the day waiting for Dr. "Suave" to come talk to us - it was after 6:00 pm before he showed up again. He did an exam of my mother, and I was pleased to see that she was talking a bit and more responsive. She actually told him she was thirsty and asked for water. The nurse would not give her water because she failed her swallow test, but agreed to swab her mouth. Dr. "Suave" kept asking her to squeeze his hand, and she said "Give me some water first." We laughed because it was...well, it was MOM.

After his examination, he sat down with us and showed us her scans and explained everything to us. In short, he showed us what he removed, where the tumor was located, why he did not remove some parts of it. He also showed us where the tumor has continued to grow since the surgery, and he explained that it is one of the most aggressive tumors he has seen. The tumor is just exploding, especially in the area of her brain near the basal ganglia, which controls a lot of critical functions. He said that he felt her increased sleepiness and swelling was due to the tumor growth, not the surgery.

In short, he felt that mom's time is quite limited...perhaps only days or weeks if the tumor keeps up its rapid growth. He said the goal was still to get her sitting up, talking and eating, and he hopes to be able to start chemotherapy and radiation. But, he also made it clear that it might not happen, and he would come to talk to us again if that is the case. In the best case scenario, we can get my mom some function back, time to talk and interact with us, and time to try radiation and chemotherapy. He felt that the treatments were unlikely to buy much time, though.

He reassured us that finding this earlier would not likely have changed the outcome or bought her more time because of the aggressive nature of the tumor. Needless to say, we are devastated. We had hoped for months, or maybe even years, but day by day, that hope seems to be fading. While the average life span for most people with this tumor is a year from diagnosis...it does not look like we will have that luxury because of the speed with which this tumor is growing.

What else can I say? After our conversation with Dr. "Suave," we kissed mom good night and went downstairs. We decided that mom's friends should go see her. We've slowly started to spread the news, but we just don't even know how to say this. We want to have hope...and we want to believe in miracles, but at some point, we have to live in reality, too.

This has been a trying time for us. You see, I'm the realist here - I focus on the pratical and the worst case scenario so I can cope. I always have to have a plan. I've been planning for my mom to come home - we've been searching for houses to rent that she can live in (one with a first floor bedroom) and juggling schedules and identifying care options. My father - he is the dreamer. He hears only the best case scenario and believes it will all be okay. He has a hard time listening to the reality. Up until today, he has been decorating the house so that it will be ready for my mom when she returns home. My brother? Well, he knows the reality, but prefers to deny and avoid it. His normal reaction is to run and hide - if he doesn't have to see it or discuss it, maybe it doesn't exist. To his credit, he has been PRESENT. He is fighting that urge to hide, and sticking it out day by day and really facing these tough issues. So, today was hard for all of us...I realized that my plans were pointless, my brother was forced to confront what he doesn't want to see, and my dad heard some reality. So...today was not a good day.

I guess I sit here sad...and angry. I'm angry that we are all being robbed of time. That my mom will not get to see her grandchildren grow up, that our children will not get to have that special relationship with her that I had with my grandmother. My mom is so loving and kind and an amazing grandmother. They adore her, and she has so much to offer them. I feel like I'm losing my last connection to my grandmother - there is no one else who can share those memories with me and make her come alive to me. I don't have any time to extract all the information in my mother's head that she knows about our family that I never learned. I'm sorry that I didn't have her show me how to make her brisket...holidays just won't be the same without her brisket, which tastes different from anyone else's brisket. I'm sorry I'm losing one of my best friends - there are few people in life that I feel comfortable leaning on, and my mother was one of the only ones. There is no one on this planet who knows me better. She is my anchor and my sounding board, and I count on her for so much. These past few months have been hard because I've been lonely without having my mother to turn to for support, guidance, and frankly, help. And today I realized that I will likely not get her back even for a short while. I had hoped for time to talk a little more, to have her record video messages for the children, and to have some photos and videos of her to cherish in the future. I had hoped for more minutes when we could just sit and watch tv, or to watch her eyes sparkle at something amusing. I wanted to see her sitting on the couch and smiling as the kids played. I just wanted...more. And I'm afraid our time is up.

So...it is now time to go back and put on a happy face, and hope for better news in the morning. Maybe the swelling will go down, and maybe she'll be able to sit up and eat, and maybe we'll get a few weeks to cram in...more. Maybe. I hope so. I just don't know how to say goodbye.

Saturday, August 28

Today was a good day. Amazing to me, especially since I was up all night last night - I didn't even attempt to lay down until 7:00 am. It has been a long time since I've been able to utter that phrase, but in the context of this nightmare, today was a good day. The kids woke up around 8:00 this morning, and I nursed the baby and we decided to bring Micah into the bed to cuddle a bit before breakfast. Micah loves to burrow into the bed and pull the pillow over his body and say "night night." He snuggled in bed with us for a bit, and spent a ton of time pointing out our eyes, nose, ears, mouth, teeth...and then he discovered the baby. He spent the next few minutes poking her eyes out and trying to lay on top of her and give her a hug.

I called my father around 8 or 8:30 this morning to see how mom was doing and talk to him about the many adventures of Micah and Maya...they are always good for a smile. He said the nurses had told him Mom was more awake today and more verbal. Naturally, I was afraid to read too much into that because I hate disappointment.

In another comic moment, after the call with my father, I went to the bathroom...followed in, of course, by Micah. He watched intently as I went to the bathroom, and felt the need to announce "Mommy poo poo." As I flushed the toilet, Micah made sure to clap his hands and say "Mommy yay." I was grinning, and wanted to ask if I could get my gold star. Naturally, I called my father to share the story, and I could hear him smiling over the phone...a genuine smile amidst all this sadness.

Around 10 am, my friend called to tell me that she and her mother were on their way over. I was quickly showering and we were working on getting the kids dressed while we fielded phone calls. They arrived shortly thereafter, and we sent Micah off to synagogue with DH, and then my friend and her mother took me and Maya up to the hospital to visit my mom. When we arrived, I decided to skip breakfast and go straight to the room, even though I knew Maya likely wanted to nurse a bit.

I got upstairs, and much to my surprise, my mom was awake and talking. She was speaking clearly and knew exactly who I was and where she was. Her right eye was very swollen and purple - looks like someone popped her one. I held her hand and asked how she was...and she told me she was dying. I was a little stunned, but did my best to reassure her. She then proceeded to ask me for help - she said the nurses were trying to kill her. I quickly realized that this was a side effect of the medications she was taking, but it was still worrisome to see. It actually reminded me of my grandmother when she was in the hospital.

My mom began complaining about the feeding tube they had put in through her nose...she said it was hurting her throat and choking her. I asked the nurse if they had tried her swallow test again this morning, and was informed that she had choked again. I tried explaining it to my mother, and she told me that I was trying to kill her, too. At that moment, I couldn't help it...the tears and hurt welled up. While logically I understand that it was the medicine talking...it still hurt to hear my mother say I was trying to kill her. I calmed myself down while the nurses moved my mother from a bed to a chair and sat her up. My mom again called for me and asked me to help her because the nurses were trying to kill her.

I reminded her that the doctor had ordered the tube, at which point she said "Yes, Dr. "Suave"- he was in earlier today, and I asked him to take out the tube and he didn't help me either. He is trying to kill me, too." It was with that sentence I felt some relief...because she remembered the doctor, recognized him, and knew he had been in to see her.

I then told my mom I would ask them to repeat the swallow test later, and when she heard me asking, she started to believe again that I was helping her. I called my dad and gave him an update to prepare him, and she asked him to come help her, too. I got some swabs for my mom, and began to swab her mouth. She thanked me and asked for a drink or ice chips. When that request was denied (by the nurse) she asked if the swabs could be cold, so I asked the nurse for a cup of ice water. I began dipping the swabs in the ice water, and she told me it was much better.

When the nurses were gone, my mother kept begging for ice chips. I remembered that when my grandmother was sick in January, my mom would sneak her tiny ice chips even when they had restricted her due to swallowing problems, so I felt I should try and do the same. I only gave her the tiniest of chips - not enough to cause any choking or aspiration, and it truly brought her some relief. She started to calm down as I stroked her arm and scratched her back.

By the time my brother arrived, she had stopped accusing everyone of trying to kill her. She was loudly complaining about the feeding tube and asking for it to be removed. When we explained that she failed her swallow test, she kept insisting she could swallow and would demonstrate it for us. She ordered me to get the nurse back in so she could prove she could swallow.

We began to talk to my mom about all the messages we've been receiving - in the mail, by text, on facebook, and here on this web site. My mom was touched, and she told us to thank everyone for their kindness. I told her about this web site, and we read her many of your messages of encouragement and love, and she was thrilled. She laughed at inside jokes...like her friend Faye's reference to my mom being her "oldest" friend, and she appropriately responded and announced to us that Faye is 10 months older than her. It was wonderful. About half an hour after I told her about the web site, my mom turned to me and said "Hey, Jess, could you do me a favor? Could you post a message for me on that web site?" I started to well up, thinking my mom wanted to post a message expressing her gratitude and thanks for the outpouring of support. She looked at me and said "Can you tell them to come and check on me? Because they're trying to kill me and no one is helping me." I have to say, I laughed, because in the moment, I think she really did mean to express her gratitude and reach out to those around her...but it just kind of came out backwards because of all the meds. So, on behalf of my mother, I want to extend her gratitude and love for all of you and your kindness to us during this time.

I spent half the day trying to get her brisket recipe...she was quite suspicious of why me, her vegetarian daughter, wanted the recipe. I talked to her about her friends who were planning to visit the next day, and she said she was looking forward to it. She spoke to a few people on the phone as well.

We talked to her about passing the swallow study, and said it was important for them to understand that when she was coughing she was clearing her throat because of the tube irritation, not because she was choking. After that, EVERY time she cleared her throat, she announced "I'm not choking." Except one time...when she announced "okay, so I choked a little." It kind of reminded me when she tells me something (like I promise not to tickle your chin) and then she screams "I LIED" as she dives for my ticklish spot.

I saw the doctor briefly in the afternoon - he said he was amazed by the change in 24 hours, and he was encouraged that we could possibly stabilize her...for now. Nevertheless, it was a little glimmer of hope, and we needed to think we could have even just a little more time.

My mom accidentally knocked her feeding tube out in the late afternoon...while the down side was they needed to reinsert it, she was tube-free for about 3 hours, so it was a nice break for her. Tami and Bobbi watched Maya for me until about 3. They kept me company during lunch, and then said their goodbyes. Right around that time,two of my parents' friends arrived for a visit. They spent time with my mom, watched the baby, then took my father out to dinner. We decided to leave around 7 - my mom was getting sleepy, they were reinserting her tube, and we hoped she would have a comfortable night.

If she continues along this path, they may be able to move her to a regular neuro inpatient floor in a few days. They may even be able to get her to rehab. IF. So, let's hope tomorrow is an even better day, and that IF happens.

So, tomorrow we will be there in the morning. We are expecting some of her "oldest" friends to come down for a visit, and one of my best friends, Heather, will be joining us to help out. In fact, I'm racing to type up this update before Heather arrives to give me a bit of a break tonight. If I have my glass of wine tonight, I'll be drinking to more "good" days.