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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.
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.
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.
I don't have the time or the heart for eloquence today. My mother took a turn for the worse overnight. She has likely suffered either a brain stem bleed or a new stroke. We are waiting for an MRI to confirm. Ultimately, it is not good news and the prognosis is poor. She is on oxygen and is no longer responsive. We were told to rush to the hospital today, and we suspect time is running short. My heart is breaking...I do not wish my mother to suffer another moment, but I don't want to have to learn to live in a world without her.
The last 24 hours have been a challenge. Around 4:00 am, Mom sort of "woke up" for a bit...she was agitated, wanted something, and could not speak. It dawned on us that she can spell...so we cycled through the alphabet and she nodded at the letters to spell what she wanted to say. I have to say, I thought she was trying to communicate something monumental...that she loved us, that she didn't want the treatments to continue...something. Turns out, she spelled "H-O-T." Dad, Jeremy and I actually laughed when we realized what she was saying. We did our best to help cool her down, and she went back to resting.
Since Mom was looking stable and alert, and since we were told she would not get a room until the next afternoon, we decided to work out "shifts" so we could get some rest. Dad wanted to stay, and I desperately needed to get home and pump because I was so uncomfortable, so Jeremy and I left around 5:00 am.
We woke up around 8:15, and I think it took us another hour to get out the door (the phone was ringing, we had the kids here, I had to gather a few things). Jeremy and I were back at the hospital by 9:30, Elliot joined us, and Mom was still in the ER. She was very sleepy, and not as interactive as when we left at 5:00 am.
Mom was trying to communicate again...this time, she wanted a pen. We tried giving her one to write, but she was not yet able to hold a pen and write (since it is her right side affected). She was clearly frustrated. She finally was able to tell me that she had a headache and was nauseated, and it dawned on me that she had not yet had any of her steroids since 11:00 the prior evening. I also realized she had missed her morning dosage of her anti-seizure medication. I went out to talk to her nurse...and she said "oh, those medications were written up for oral administration, and since she can't swallow I didn't give them to her."
Naturally, I went ballistic. I was infuriated that they would withhold medication from a woman with brain cancer, especially, the medication that was keeping her safe and pain-free. They initially ignored me, but I was quite insistent...and eventually had the nurse manager, a patient advocate and a few others scurrying around to correct the problem. I made it quite clear that this was a huge error that was tantamount to negligence, and that they were causing HARM. My mother keeps saying that the medical oath includes the phrase "First do no harm" and yet all of these medical professionals continually seem to do harm by ignoring and being careless.
Once they gave Mom her meds, I felt much better. Somewhere in the middle of the hoopla, Elliot took Dad home to rest, and Jeremy and I stayed with Mom. One of the fellows from the stroke team came by...and he was terrible. He barely spoke two words of English, and he was unable to answer any of our questions. Luckily, I have a friend who is a neurologist, and Elliot faxed her Mom's MRI scan, and she called back with more specific information.
As we have learned, Mom's stroke was relatively small, but it is in an area of the brain called the pontine region. The pontine region is sort of the "traffic cop" for the movement on the right side, and for the facial/throat muscles that are needed for speaking and swallowing. The language center is unaffected, so right now Mom can understand, she knows what she wants to say, but she is unable to make her muscles cooperate to allow her to speak. In patients without brain cancer, these types of strokes are usually highly responsive to rehab. Unfortunately, because of all my mother has been through, we just cannot predict how she will respond.
Ironically, the "best" news of the MRI was my mother's tumor. It really has shrunk significantly and the swelling has dramatically decreased. The midline shift has greatly reduced, and the ventricle had re-inflated. This is much more than we were told to expect only one month post surgery and radiation, so from a cancer perspective, Mom is in good shape right now.
She will need speech, physical therapy and occupational therapy, but the most important component will likely be speech. We need to teach her how to re-route the control function, and then she should be able to speak and swallow again. We will know in another day or two how quickly she is recovering. She will need to do several swallow tests over the next few days, and they may need to start giving her some nutrition through a feeding tube. That is definitely a touchy situation...we really hate the idea of a feeding tube, but our expectation right now is that the tube is just a temporary solution until we can get Mom swallowing again on her own. It may be possible to avoid the tube altogether if Mom can pass her swallow test.
It was after 1:00 pm before we finally had a room. Jeremy and I had complained about the earlier visit from the stroke fellow, and the stroke nurse coordinator was there to meet with us. She was lovely, and we requested that we see a different doctor with better patient communication skills, and she told us the doctor would be by in the afternoon.
As Mom was transferred to her room, Jen arrived. She had dropped the girls off at our house to play with Micah while she came for a visit. She was there for a few hours before heading home (and unfortunately got caught in terrible rush hour traffic). Mom is actually in a great room, and her nurses are quite kind. After we got our room, the visitors started to arrive...Gail, then Suellen, then Sheila. Mom was aware that everyone was there, but she was very sleepy. She was still communicating that she was uncomfortable, and we tried over and over again to adjust her position. Her left leg and arm are actually moving quite well - somehow, since she is unable to use the right due to the stroke, she seems to have re-discovered her left side again.
As promised, the neurologist (Dr. Moreno) came by in the afternoon. He did another full background and an examination of Mom, and he was quite kind with her and he took a long time to talk to us. My father had just returned to the hospital, so we were all there. While he was reluctant to promise anything, he did give us better information. He agreed with my friend's assessment that these strokes are usually responsive to rehab, but we just have to see what is happening with my Mom. He talked to us about the treatment plan - they do expect Mom to be in the hospital until next week sometime. He will be sending a speech language pathologist in and the rehab doctor for their evaluations and recommendations, too. Our first goal is to work on the swallowing and try to get her eating again, hopefully on her own. We do not yet know if Mom will go to an acute rehab or a sub-acute rehab - it all depends on how awake she is and able to cooperate with treatment. He even gave us hope that perhaps she could walk with a walker again...especially since she now is able to use her left arm and leg.
After seeing the neurologist, we also got a call from Dr. Holdhoff. He was very sorry to hear about Mom, and he said that he had looked at the scans and the results, and he thought the whole thing was "weird." I gave him my version of the story (again), and he kept asking me if Mom had a drop in blood pressure. According to Dr. Holdhoff, this stroke was not caused by the cancer. It is in a different, unrelated and unconnected region. He also said there is no evidence of a clot or a bleed, and while most doctors presume it was caused by a clot, he thinks that would be unlikely given Mom's low platelet count. He feels that Mom's stroke was caused by a lack of profusion (blood flow) to her brain, and he thinks that Mom either had an allergic reaction to the medication or to the platelets (platelet transfusions can cause reactions, which is why they give benadryl along with the platelets). He thinks that while Mom was having the reaction, Mom's blood pressure dropped dramatically and caused the stroke. He also said it could turn out to be "good news" in that it may be more of an ischemic attack than a true stroke, which would mean that the effects could be more temporary and resolve a bit faster. I guess we'll just have to see how this unfolds.
Sheila drove me home a little after 6, and Jeremy left at the same time. I came home, dealt with dinner and bed for the children...and then I fell asleep on the couch. My father came home around 11, and he went to sleep. My mother is by herself at the hospital. We decided not to get an aide because the care ratio there is good, and frankly, there isn't much an aide can/will do for her. I think Mom would be more frustrated that there is someone there with whom she cannot communicate. I hope they check on her frequently throughout the night, and I hope that she is able to communicate what she needs. We'll all be headed back in the morning, and we'll see how the night went.
We are open to visitors, but please know that this is currently a challenging visit. My mom will know you are there, and you can tell that she hears/understands you. She can hold your hand, squeeze, nod, blink, and look at you. I do not know how alert or sleepy she will be at any given time, and she cannot speak right now. She also is not able to eat yet, and they may be putting in a feeding tube to keep her fed to regain strength and start the road to recovery. It is difficult to see my mother in this condition, so please consider that before coming, and only come if you are certain you can handle it appropriately. We do not want any negativity around my mother during this trying time because she does see and hear what is happening around her.
I will update again as soon as I can. I did read your messages yesterday and some of the blog - Mom is still able to listen, so your words of encouragement will help a lot right now.
