Waiting

No real updates...but for some reason, I feel compelled to write. Maybe it is because I don't exactly know what to do with myself, and maybe it is because I suspect so many of you are out there sitting on edge, waiting and wondering, too. It helps, knowing that people out there care.

Today would have been a typical day in the household...if not for the fact we are waiting. Maya actually slept in her crib last night (well, in the car seat in her crib). She woke up around 8:00 am, and I grabbed her to bring her into bed to nurse. Actually, when I walked into her room, my heart stopped for a moment...she was jammed in the bottom of the bundle me, out of her car seat and caught between the car seat and the crib. All of the horror stories about children dying of strangulation in their cribs flashed through my mind, and I raced over to make sure she was okay. There she was, smiling and cooing, and doing just fine. Naturally, my next set of thoughts were ways to kill Elliot, especially since I'd asked him before he put her in the crib if she was buckled into the seat.

I took Maya back to the bedroom and decided to kill Elliot later. Mom was sleeping peacefully. I nursed Maya, and heard Micah wake up. I went in to wake Elliot, yell at him about the car seat (he claims he misunderstood and thought strapping her into the seat was more dangerous), and ask him to help with the kids.

Our morning was fairly run-of-the mill - Micah threw cereal on the floor, Maya dozed on the bed after nursing, and I gave Mom her medications and moved her a bit. I needed to do a few things to get ready for the day, so I asked Elliot to sit with Maya while I went about my business.

I cleaned a few things, did some organizing, got dressed, answered some calls, and made appointments with the hospice caregivers. My Dad was out running errands while Elliot napped with Maya. Jill and Paul Levine came by this morning to bring some turkey soup. We haven't tried it yet, but Elliot is planning to eat it for lunch tomorrow. Thank you so much for thinking of us and coming by to visit.

The social worker arrived next. She was quite kind and helpful, and she talked about the different family resources hospice provides. My father arrived home during our meeting and joined us. She stayed for about an hour, and then she left. A short while later, the nurse from hospice came to see my mother. This nurse was a bit...cold. She did not talk to Mom at all before touching her, but she did try to provide us with some helpful information. While she was wrapping up, the home health aide arrived to give Mom a bath. She took care of Mom, helped reposition her, and then she left.

We had a quiet afternoon. My friend Laurie came over and brought lunch (bagels, tuna, egg salad) and then we went for a walk. When we returned, everyone was napping! Laurie left, and I tried to take advantage of the quiet...but of course the kids woke up a few minutes later. I played with the kids and tried to get a few things done around the house. I went in to spend time with my mother, too.

In the late afternoon, Sheila, Les, Suzette, Joel, Robin and Elaine arrived. We all sat and chatted a bit, and the ladies got to work helping me clean up the kitchen. I have to say, their help was amazing! We can find things in the drawers, the kitchen table is finally cleared off, I have counter space again (although I still hope to clear off a few more things), and my life is feeling a bit more ordered. I truly hate all the chaos in the house, and really just need a few days to put everything in order.

While they were helping, my friend Benita brought over dinner - spinach salad, split pea soup, and macaroni and cheese. Benita is a friend from the past...I met her when I was in 9th grade at a BBYO convention. I was a member of a failing chapter, and we were thinking of folding the chapter and either joining another one...or just dropping out of BBYO. I sat at her table at lunch (and today, I actually found out it was no accident). I had no idea that she was the Regional President. We just talked...and next thing you know, I'm deciding to become chapter president and rebuild it. That night, at an event called "Lifetime," the senior girls who held office on the council/regional level were honored. They talk about their time in BBYO, tell stories, but most importantly, they give a twig representing their past to someone who got them started, a twig representing their present to the people most influencing their present, and a twig representing their future to someone they believe will go far in BBYO. Benita gave me her future that night...and it changed the course of BBYO for me. I ran for President of my chapter, rebuilt it into one of the strongest chapters in the council, and then later became the DC Council Vice President and President. I can directly thank Benita for inspiring all of that, and it made a huge difference in my life. When I gave DC Council life 3 years later, I gave my past to Benita...even though she wasn't there to receive it. Over the years, we've run into each other on and off, but we never really kept in touch through any regular means. She always meant a lot to me...just the mention of her name could bring a smile to my face. I think we all have people like that in our lives...someone that just means something to us. Through Facebook, Benita and I reconnected. We comment on each others' statuses, we have exchanged notes, and today, Benita brought food and support to comfort me through a difficult time. Benita, I cannot even begin to tell you how much that means to me...and how much your friendship has influenced my life. So, thank you. I look forward to getting reacquainted with you.

Suzette, Sheila and Elaine served us dinner at 6:00, and it was a wonderful dinner. By 7:00, they all said their goodbyes and headed out for dinner together. After dinner, my father watched tv downstairs for a bit. Around 8:15, we started the process of putting the kids to sleep. Elliot took care of Micah, and my father helped me bathe Maya. I nursed her to sleep, and then I tried to transfer her into her crib. Naturally, the screaming ensued. I'm getting so frustrated that Maya won't sleep on her own anymore. I'm really hating this phase, and I do not know how to break her of the habit.

Krystal came by as dinner was wrapping up. She just wanted to see Mom. She was so kind - and it was wonderful to see her again. I had hoped Krystal would be here with us for a long time. I know she will be in our lives forever...and I know that Mom wanted us to celebrate Chanukah with her. So, when the time comes, we're going to have a Chanukah celebration Brodey-Harkavy style with Krystal and her son.

We tried putting her back in the car seat, and we let her cry for over 30 minutes. Finally, Elliot decided to take her for a ride in the car. He came back around 10:30 with a sleeping baby, and she is currently in the car seat in the crib (properly buckled in this time). I'm hoping she'll sleep until morning. I think my goal is to get her sleeping at a normal time at night and on her own (not in my arms) for the next few days, and then we'll work on getting her to sleep in the crib without the car seat, and THEN we'll work on getting her to sleep while she is awake but drowsy. One battle at a time, right? I think establishing the habit of an earlier bedtime and sleeping alone should be the first priority, however we get her sleeping.

We are now here sitting and watching the news. I'll head back shortly to check on my Mom, and probably reposition her and give her more medications. I lotioned her up earlier this evening (her skin felt so dry, and I know she always feels itchy when her skin is dry). We gave her some Tylenol because she has a fever, I took off her covers so she could cool down, and I changed her pajama top to a sleeveless shirt. I also used the Albolene on her face, swabbed her mouth, and put the special cream on her head for the radiation itching. Her breathing was slow and steady the last time I checked in on her. I also stopped for a brief conversation...I'm not sure if she can hear me, but I wanted to talk to her about my day. I miss her laugh, and I miss our chats, and I'm just missing my Mom. Maybe that is what drove me here tonight to write.

Thank you all for waiting with us.

Quick Update

I know so many are waiting and wondering what is happening here...and I honestly do not have much to report. Mom is still with us. She seems to be resting comfortably, but her breathing has been more labored today.

This morning, Arleen showed up with bagels and cream cheese for us - it was a wonderful surprise! She stayed for a bit to help clean up and do whatever she could around the house - she fixed our plants, watered them, did some dishes - it was a huge help. She seemed to be in the same mode as me...I am feeling so out of control in my life that the only thing I can do to exert any control is clean and organize. I cleaned my room, I organized my mother's room, I worked on the bathroom, and I attacked the mess in Maya's room. I also managed to get a shower today, too. I have a long way to go before I actually have the house in order, but I feel a bit less stressed now that my environment is more organized.

As Arleen was getting ready to leave, we had a visit from the home hospice nurse. She arranged for an increased dosage of pain medication (which also helps with her breathing), and she added two additional medications for us - one to help alleviate any anxiety and relax the body (if she is aware), and one to reduce her congestion. The changes in medication seem to be helping - she has been resting comfortably once again, and her breathing has slowed again with the medication.

We had a series of calls from friends and family, and a few more visitors - our cousins Mel, Donna and Jill, Sheila and Les, and then later tonight Suzette and Joel. The hospice chaplain (Rabbi) stopped by to talk to Dad and Elliot and say a misheberach for Mom. We were supposed to have two other visitors...Suellen and Greg. Unfortunately, they detoured to the hospital. He is staying there over night, and we still have no word on what happened. We are thinking of them tonight, and hope that he is feeling much better.

We had a quiet dinner of leftovers, and Micah went to bed fairly easily. Maya, however, is being a little stinker. I nursed her, got her into her crib...and 20 minutes later she woke up crying. She is currently curled up on her Goppy's lap watching tv and grinning from ear to ear.

I went back to move Mom again a little while ago. She groaned loudly when I shifted her to her back. She coughed a bit, and seemed quite uncomfortable. I wonder if it was just a reflex, or if she was actually feeling/hearing. I then moved her to her other side, and she seems to be more comfortable again. Today I did our Albolene and lotion routine again, and I made sure to grease up her arms and legs, too. I hope she can feel me washing her face - she always tells me that she loves when I get my hands on her.

So...quiet evening. I will update when I can, but I just wanted to let everyone know that there really isn't anything to know. All the doctors and nurses have been telling us either hours or maybe days.

Holding Pattern

I guess we are in a holding pattern. Mom's breathing is stable, she is resting comfortably, but she is non-responsive. I think this part is perhaps the hardest thing we've been through yet. We know Mom is gone...and yet, she isn't truly gone. We are talking about funerals and death and trying to think "what next"...but it is not quite time to move forward.

Mom was quiet overnight. I ended up sleeping with Maya in the room with Mom, Dad took our bed, and Elliot took the couch. I think Dad wanted to stay in the room, but each little sound sent him running back out to ask if she was okay. I was able to sleep...I woke when Mom's sound patterns changed and I could check on her throughout the night.

This morning, the house was relatively quiet. Micah woke up at 5 and at 7 screaming...Elliot might have forgotten to give him his reflux medication before bed. I woke up around 8:00 and Elliot, Micah and my Dad were still sleeping. I uncovered Mom, and then decided to do our daily face cleansing routine. I wiped her face with Albolene, then used some lotion on her face. She seemed to relax as I cleaned her face. I repositioned her and then started our day.

Around 9:30, the hospice nurse came by to admit Mom into the program. She was quite kind and helpful and she helped me reposition Mom in bed. We went over their services, different medications and when to use them, and we talked about their procedures.

A little later, Arleen and Lorin came by with some food for us for Thanksgiving. We had a great visit with them, and we were so appreciative of the meal. After their visit, my father ran out and Micah, Maya, Elliot and I took a nap.

We received tons of calls and messages today...thank you to everyone for your words of support. We have been sitting back and quiet because we just do not know what to say. We are waiting. We are in limbo...sometimes it feels like every other day, and sometimes we sit here at a loss and crying. We don't exactly know what to do with ourselves during this time.

Ultimately, Jeremy, Jen and the girls went to Thanksgiving dinner at the Breslows. We just did not think it was right for the girls to be here right now. It is one of the few times we have not all spent Thanksgiving together. I know that we plan to do our own Thanksgiving with Brodey food in a few weeks, but it felt strange to be separated for Thanksgiving. Elliot decided to take Micah up to our cousins farm for a few hours to try and give him a touch of normalcy. He had a fabulous time, and came back with lots of leftovers.

Dad and I stayed in and ate the dinner Arleen and Lorin brought for us. It was a bit sad for us...we know how much Mom had been looking forward to our annual trip to the farm. You see, Hank and Marlene finally built a house! For almost 20 years, they have been living in an apartment above a barn, and this was the first Thanksgiving we were going to spend in their new house. My mom was doubly excited because it is a wheelchair accessible house, and she knew she could go and relax and even use the bathroom there. My father and I were sad that we couldn't make it to the farm...and even sadder that my Mom will never get there.

Even if we could have found someone to sit with Mom...we didn't want her to be away from us. Even more than that, my father and I didn't think we could handle the questions. So, my father and I ate dinner, sat with Maya, and we talked. We talked about the past, and we talked about our future. We are about to embark on a huge life change, and I think we are both a bit uncertain about lies ahead.

It is so hard for me to feel thankful today...how can I be thankful when I am losing my mother? I am trying to be thankful for our precious relationship, and I am certainly thankful for all the support our friends and family have shown during this difficult time. I am thankful that so many people care about us, and I know that your strength, love and support will get us through these next weeks. I am also thankful for my beautiful children and for Elliot, and I know that I'm lucky to have my brother, father, and nieces to hang onto during this time. I am not, however, thankful that Maya is still awake and grinning at me at 9:37 pm. Try as I might, I just cannot get that child to sleep unless she is cuddled on top of me.

We will keep you posted...but for now, we are just in limbo...watching and waiting.

Beautiful Words

My brother is not one for posting much, but I thought I'd copy his Facebook status and share it here:

I am thankful for the 33 years together with her, for the lessons she taught me, for the love she showed, for the honesty she gave, for the clarity she offered, for the guidance she provided, for the support when no one else cared, for the smiles, for the hugs, for the comfort. I am just plain thankful that I got so much time with her and I am so sad I don't get more. I love you mom.

Saying Goodbye

We're home. It has been a long, emotionally draining day, but we're home. All of us.

My father and I received a phone call this morning at 8:00 am from Mom's doctor. He told us that Mom was non-responsive, and that her pupils were no longer reactive. We told him we were on our way. Dad and I threw on clothes, called Jeremy, and I think we were at the hospital by 8:30. Jeremy arrived a little after 9:00, and Elliot and Maya came later.

When we got there, it was clearly not good news. Mom was just...kind of gone. Yesterday, she was moving, responding, looking at us, paying attention, but today...nothing. Well, perhaps I shouldn't say nothing. She had visitors in and out all day...Sheila and Les, Arleen and Lorin, Diane and Joey, Michael Greenberger, Francine, and Robin. The phone rang, too, and we put a number of people on speaker phone to try and talk to Mom (Jen and the girls, Rayna and Trenna). At times, it seemed like she was responding to a few people both on the phone and in person...she would fidget, she would try to move her mouth, and a few times she made some grunting sounds. I think each time she was trying to say she could hear, that she loved them. I've decided to believe that she could hear us all, that she knows how we feel and heard what we said. I read all of your messages from the blog, and will continue to read them over the days to come.

It was a long arduous day. We ended up sending Mom for an MRI this afternoon to try and figure out what had happened. It turned out, Mom either had a second stroke, or the initial stroke spread dramatically. The entire pontine region was affected, and I think we were told her brain stem as well. Ultimately, it means that there is no chance for any kind of a recovery.

After we received the MRI results, we decided to make a tough decision. No more. No more needles, no more drugs, no more tubes, no more tests, no more pain, no more discomfort. No more. We decided to bring Mom home. We asked the social worker to start coordinating with hospice, and we told them to make it happen today.

We asked about her pain/comfort level, and we decided to figure out what was keeping her comfortable and what she needed. We decided to discontinue all of her medications, except for her pain medications. We stopped the antibiotic, we stopped her blood pressure medication, and we stopped her anti-seizure medication. The hardest medication (for me) to stop was her steroid, which reduces brain inflammation from the tumor. I know that when she goes more than 12 hours without it, she normally gets a headache, and it can quickly escalate into nausea and vomiting. I don't want her to experience any pain at all, but I don't want to give her anything to prolong this either. I am hoping that because she is already in a coma that any increased brain swelling from stopping the steroids will go...unnoticed by her body. If she does have pain, we can always give her morphine...and we can always ask for a new prescription for the steroids.

It took a while to arrange the discharge/hospice plan. Mom has been on oxygen all day today...15 litres. We had to wean her to 10 litres in order to bring her home. Elliot had left around 4:30 to get home in time for Megan to leave, and he was waiting for delivery of Mom's oxygen tank. As is no surprise, they made a mistake in the order, and only delivered a 5 litre compressor. It was a long complicated mess to correct the problem. Jeremy left around 7:30, and he took some time to say his goodbyes. Finally, a little after 8:00, we were able to bring Mom home.

Dad took Maya and drove the car, and I rode in the ambulance with Mom. We brought Mom home at 9:00 tonight. The hospice nurse arrived shortly thereafter, and gave us some advice and tips. Mom has been resting comfortably for the past few hours. We've each taken some time to go in and say our goodbyes.

When I was talking to Mom, she opened her eyes, moved her mouth, and started making loud noises. I have to believe she was telling me she loves me.

Tonight, I'm angry again. I feel cheated...I think my Mom has been cheated, my children have been cheated, Jeremy and his girls have been cheated, and my father has been cheated. I cannot believe that we finally succeeded in getting my mom through radiation, chemo and home, that we managed to get this tumor smaller, that Mom was stronger, only to have these strokes, unrelated to the tumor, take Mom out. Jeremy kept saying it was like someone just doesn't want her to win.

It just isn't right and it isn't fair. I was coming to terms with the fact that cancer was going to kill my mother far too young. From the shape of Mom's tumor, the cancer would easily have given her 6-9 months, and possibly longer than that. Even with the first stroke, I think I left the hospital last night believing that maybe, just maybe, that stroke was our "miracle" - our blessing in disguise. Mom was moving her left side, and I thought that with a few weeks of rehab, we might really get her standing and walking again. I thought Mom was going to be BETTER than pre-stroke. I thought that perhaps all of this was happening so that she could have more time, quality time, time to spend with her family.

I think my optimism made today that much harder for me. This stroke came out of the blue. We had passed the danger time frame...all we had heard was that if we got my mom through radiation and chemo, there was no reason to think we wouldn't have at least 6-9 months. And as the early scans came back, as the doctors grew excited, we started to believe that she would beat the odds and be around even longer than expected. We just knew Mom's fighting spirit would triumph longer than expected.

After my initial panic that she was dying, I thought that she was going to rise above this and prove them all wrong once again. To wake up today to have my mother taken from me once again...well, I have to admit it was almost as awful as the day we learned she had a GBM. It was as if the wind was knocked out of me, once again.

Tomorrow, Thanksgiving, is exactly 3 months from Mom's surgery...and 3 months and 4 days from when we admitted her to the hospital. We went through all that hell...for fourteen days at home together. Fourteen days. She did have several months to see old friends, and we had a beautiful break fast celebration and a perfect 65th birthday party. But we only got 14 days together at home. I'm stunned...I was sure we would have months. I was hoping we'd even have a year or more. But I was sure we'd have the holidays and into next year.

So, I guess I'm just stunned. Mom is home, she is resting comfortably...and I guess we're all just waiting for the end. I hope it comes peacefully for her. I hope she knows she is loved. And I hope that she does not suffer another moment. I hope for all of our sakes that this misery does not drag on too long...and I am dreading the day when she is truly gone from my life. I lost my mother Memorial Day Weekend and I didn't even know it...and it took 6 months for this to run its course. Six months. So long...and yet not nearly long enough.

I have to work on saying goodbye to my sunshine. I love you, Mom, and I will miss you forever.