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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 Tami 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 Elliot, and then Tami and Bobbi 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. Olivi - 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, my parents' friends Gail and Steven 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.
It is 4:20 am and I can’t sleep.
Yesterday was not too good. The swelling has increased, and the tumor is expanding. The doctor spent while with Jess, Jeremy and me to explain what was going on, and show us all of the slides, etc. I didn’t want to hear it. The goal now is to get her to: 1] sit up in a chair, 2] eat, and 3] talk. In other words, to try and have a “normal life. I honestly don’t know if that will be able to be done. I am really at a loss.
On Monday, I have to start seeing the people I have avoided for my entire life. I have to pick a plot and make arrangements for the other stuff. SHIT!!!!
Somehow or other I, along with the kids, will get through this. But, it isn’t fair to Debbie.
When asked, the doctor was very clear—this could not have been prevented from happening if we saw it last week, last month, last year…. The cells were there, and they decided to expand over and over and over, as they wanted to. I guess that is why they call it “blastphoma”. [I know that isn’t the reason, but it sounds right to me] Anyway, I just hope that Debbie can be kept comfortable during this ordeal.
This has been one hell of a way to gather your friends together. They have been great, especially in helping Jessica. Maya is nursing, and has to be with Jess at all times. The hospital will not allow anyone under 16 above the lobby level at any time. [Unless they are pediatric patients, naturally.] Well, our friends have been doing babysitting--when we are upstairs, they are downstairs with Maya.
I am sorry I am rambling on, but it is somehow helping me by just writing this morning.
Oh yes, the doctor said that this kind of a case was like 8::100,000 – and Jessica asked: “Couldn’t have been a lottery ticket instead” Why do we have to lose by winning???!!!
Today was not a good day. To tell the truth, I am not even certain how to go about writing this entry. My father called to check on Mom again this morning, and the nurse reported that she had increased swelling overnight and was a bit more sleepy. From what my father said, it sounded normal and expected.
My friend Tami had come into town from New York to be with us, and she arrived at my house at 9:00. I asked Elliot to stay home for the day with Micah and the babysitter and let me go up for a few hours with Tami. I did not want to feel compelled to come rushing home in time to relieve the babysitter. My plan was to head up early and try to drive back no later than 4:00 pm to avoid traffic and give me time to spend with Micah for dinner and bed. I think Micah has had the roughest time throughout all of this - I've barely seen him for the past week. I often leave right after he wakes up in the morning, I take the baby with me, and I've missed his bed time almost every evening. I think he is starved for some good quality time with me, and I just don't have the ability to give that to him right now.
When we arrived at the hospital, my mom was...well, not good. She nodded her head to acknowledge that she knew I was there, but she was not talking. I requested to speak to a doctor, and the neurology fellow came to speak to me. She was wonderful - she sat down and showed me the different scans, and explained to me what was happening. In short, my mom's brain was swelling - far more rapidly than they like to see. Most patients by this point post-operatively are alert and ready to move off of the ICU, but my mother's was becoming sleepier and deteriorating. As she explained, one of the biggest areas of concern was how her brain was swelling. She showed me that there is a midline between the right and left half of the brain. Prior to surgery, there had been some "midline shift" - a small portion of the right half of her brain was pushing over to the left side. The ventricle (a small pocket of fluid in the brain) on the right had been compressed then, too. They had hoped to see some of that relieved post-operative, but instead, more of my mom's brain had shifted over to the left. The concern was that there is no room for the swelling to move, and that the fluid build up could start to push on her brain stem and impair her functions.
She explained that they had increased her steroids to try and reduce the swelling and they were putting her on a 2% sodium chloride solution to try and draw the fluid away from her brain. She explained that they would be watching her carefully, starting with medical management, and could need to escalate. She asked for consent to put in a central line so that they could increase her to a 3% sodium chloride solution if needed, and I gave it. She also explained that if things worsened, they might need to consider surgical options (such as draining the fluid or removing a piece of her skull to give the brain room to swell).
During our conversation, the doctor repeated numerous times that they were "very concerned" about my mother and how she was responding. She was clear that while some patients have an issue with swelling, this was not normal post-operative recovery, and they had hoped for better. At that time, she felt that my mom's changes were connected to the swelling and they would reverse if we could reduce the swelling. After we spoke, I updated my father and brother, and we asked visitors to stay home - we felt that she needed some time and quiet to heal.
My mom's friend Sharon called and asked to come by to visit. I explained to her that we did not think she should have visitors, but she asked to come by to see us anyway and talk to my dad. We agreed, and they came by. Jeremy and Jen arrived a bit after that. It was Jen's first time getting to the hospital because they had been away (and my brother asked her not to cut their vacation short because he thought their daughters needed that time away). They were only able to spend a short time upstairs with Mom because they started the procedure to insert the central line.
Dr. Olivi then showed up to talk to us. He expressed his concern about my mother's state, and he also said he felt that her condition was not just from the swelling - he felt the tumor was growing rapidly and destroying more brain tissue. He said he had to be somewhere else, and promised to return later in the day when my entire family arrived.
My father arrived shortly after Dr. Olivi left. Jeremy, Jen, Tami, my father and I spent the afternoon together. We actually had a bit of comic relief while we were sitting there. My brother was reading a web site, and he saw a note about a full-page Summer's Eve ad about asking your boss for a raise. We joked about how it probably said "Don't forget to douche" before you ask for the raise. Lo and behold...that is EXACTLY what it said. We were hysterical. We then read another article making fun of the ad, and the peals of laughter just continued. It was a much needed break from the sobriety of the day.
We were able to go up and visit Mom on and off after they inserted the central line. I had yet to hear her speak, but she spoke to everyone else. I actually told her that I was starting to take it personally! Sheila and Les and Suzette and Joel were asking to come visit, and we thought it would not be fair to them to come up - our plan was to leave right after we spoke to Dr. Olivi. They continued to ask, and we were discussing if they should come up while we were in the room with my mom. She started to nod her head, and we asked her if she was nodding because she wanted them to come up. She nodded again, so we sent a note to them and told them to come visit.
We spent the day waiting for Dr. Olivi to come talk to us - it was after 6:00 pm before he showed up again. He did an exam of my mother, and I was pleased to see that she was talking a bit and more responsive. She actually told him she was thirsty and asked for water. The nurse would not give her water because she failed her swallow test, but agreed to swab her mouth. Dr. Olivi kept asking her to squeeze his hand, and she said "Give me some water first." We laughed because it was...well, it was MOM.
After his examination, he sat down with us and showed us her scans and explained everything to us. In short, he showed us what he removed, where the tumor was located, why he did not remove some parts of it. He also showed us where the tumor has continued to grow since the surgery, and he explained that it is one of the most aggressive tumors he has seen. The tumor is just exploding, especially in the area of her brain near the basal ganglia, which controls a lot of critical functions. He said that he felt her increased sleepiness and swelling was due to the tumor growth, not the surgery.
In short, he felt that mom's time is quite limited...perhaps only days or weeks if the tumor keeps up its rapid growth. He said the goal was still to get her sitting up, talking and eating, and he hopes to be able to start chemotherapy and radiation. But, he also made it clear that it might not happen, and he would come to talk to us again if that is the case. In the best case scenario, we can get my mom some function back, time to talk and interact with us, and time to try radiation and chemotherapy. He felt that the treatments were unlikely to buy much time, though.
He reassured us that finding this earlier would not likely have changed the outcome or bought her more time because of the aggressive nature of the tumor. Needless to say, we are devastated. We had hoped for months, or maybe even years, but day by day, that hope seems to be fading. While the average life span for most people with this tumor is a year from diagnosis...it does not look like we will have that luxury because of the speed with which this tumor is growing.
What else can I say? After our conversation with Dr. Olivi, we kissed mom good night and went downstairs. We decided that Sheila and Les and Suzette and Joel should go see her. We've slowly started to spread the news, but we just don't even know how to say this. We want to have hope...and we want to believe in miracles, but at some point, we have to live in reality, too.
This has been a trying time for us. You see, I'm the realist here - I focus on the pratical and the worst case scenario so I can cope. I always have to have a plan. I've been planning for my mom to come home - we've been searching for houses to rent that she can live in (one with a first floor bedroom) and juggling schedules and identifying care options. My father - he is the dreamer. He hears only the best case scenario and believes it will all be okay. He has a hard time listening to the reality. Up until today, he has been decorating the house so that it will be ready for my mom when she returns home. My brother? Well, he knows the reality, but prefers to deny and avoid it. His normal reaction is to run and hide - if he doesn't have to see it or discuss it, maybe it doesn't exist. To his credit, he has been PRESENT. He is fighting that urge to hide, and sticking it out day by day and really facing these tough issues. So, today was hard for all of us...I realized that my plans were pointless, my brother was forced to confront what he doesn't want to see, and my dad heard some reality. So...today was not a good day.
I guess I sit here sad...and angry. I'm angry that we are all being robbed of time. That my mom will not get to see her grandchildren grow up, that our children will not get to have that special relationship with her that I had with my grandmother. My mom is so loving and kind and an amazing grandmother. They adore her, and she has so much to offer them. I feel like I'm losing my last connection to my grandmother - there is no one else who can share those memories with me and make her come alive to me. I don't have any time to extract all the information in my mother's head that she knows about our family that I never learned. I'm sorry that I didn't have her show me how to make her brisket...holidays just won't be the same without her brisket, which tastes different from anyone else's brisket. I'm sorry I'm losing one of my best friends - there are few people in life that I feel comfortable leaning on, and my mother was one of the only ones. There is no one on this planet who knows me better. She is my anchor and my sounding board, and I count on her for so much. These past few months have been hard because I've been lonely without having my mother to turn to for support, guidance, and frankly, help. And today I realized that I will likely not get her back even for a short while. I had hoped for time to talk a little more, to have her record video messages for the children, and to have some photos and videos of her to cherish in the future. I had hoped for more minutes when we could just sit and watch tv, or to watch her eyes sparkle at something amusing. I wanted to see her sitting on the couch and smiling as the kids played. I just wanted...more. And I'm afraid our time is up.
So...it is now time to go back and put on a happy face, and hope for better news in the morning. Maybe the swelling will go down, and maybe she'll be able to sit up and eat, and maybe we'll get a few weeks to cram in...more. Maybe. I hope so. I just don't know how to say goodbye.
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 Baltimore so that my mom would have more time to heal before we invaded. Elliot 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. Olivi 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 Hopkins. 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 - Matt Breslow - he was able to pop in and say hello to Mom. We decided to leave after only a few hours and let Mom rest.
Thanks to all for your good wishes and support, and especially to our extended "family" who is helping us through this nightmare. I particularly want to thank the Luchs, Levines, Lichters, Breslows, Niedelmans, Kayes, Heather Cohen, Laurie Pollack and Tami Willens whose presence and support at the hospitals has been incredible - we just couldn't be doing this without you. There are so many other family members and friends whose calls, emails, texts, posts, love and offers of prayers and support from afar have been amazing. There are too many to name, but the outpouring of love, support and generous offers to help mean the world to us during this time, and we are lucky to have such an incredible circle of friends and family that stretches across this country.
My mom's tumor is malignant, pervasive, and aggressive. They were able to resect 40-50% of it, and she will begin chemo and radiation soon. The prognosis...well, not what we wanted to hear. Please continue to keep her in your thoughts and prayers.
