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 my brother, and I think we were at the hospital by 8:30. My brother arrived a little after 9:00, and DH 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. The phone rang, too, and we put a number of people on speaker phone to try and talk to Mom (SIL and the girls, my cousin, and an old family friend). 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. DH 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. My brother 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, my brother 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. My brother 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.
#RenoByStyleberry (soooo close to done!)
1 month ago