Today a text came up on my phone from Beth… “Hey did you call mom and dad this AM?”. Oh shit – my heart skipped a beat. I just knew something was up and I should have called home. I gave Dad a call b/c Beth wasn’t texting me back fast enough (everyone should just answer my texts as soon as I send them you know). Anyways Dad filled me in on the news. The hospice nurse came out this week and said that Mom is getting worse and that she would be increasing her visits to twice a week in order to monitor Mom’s pain level. When Mom is showing signs of pain the nurse will order morphine which could take a few days to order. Hence the need to increase the visits.
My first thought was what did the nurse see that we weren’t seeing? Not to sound crazy but my Mom has been on the same plateau since the last time I posted. In fact she has been drinking and eating a little better than she was… not great but not choking as much as before. I thought that Mom was holding her own. If the nurse didn’t think 5 weeks ago that she needed to come out two times a week then why would she think she needed to do so now? I asked Dad this question and he said that Mom’s weight loss was the reason because her vitals are all still good. Really? I don’t get it. Mom has slowly been losing weight the past few months as she has been eating less and less so of course she is going to look thinner now. She is still heavy through her belly so it’s not like she’s a twig but she does look very thin through her face and shoulders. So now I wonder if the nurse saw something that she didn’t tell Dad or is Dad just not telling me something because he doesn’t want to upset me?
I guess I don’t know how to really take this new development. Does it mean Mom is getting worse and may need to go on morphine soon or does it mean that we have another 4-5 weeks on this plateau and the nurse finally took notice of something other than vitals? I don’t know… I have given up trying to figure anything out. I am just making sure everyone knows that I may have to go home at any time. Not that this is any different than before but I will admit that I am a little scared because this nurse means business now.
So I will continue to wait and evaluate the situation each weekend. Until then I am going to be sad and process this the best I can. As it is I have a hard time seeing Mom in this state. I try to stay busy and not have too much downtime with Mom b/c it’s in these moments that I am most sad. It is really hard for me to hold it together when I have quiet moments with Mom because that’s when reality sets in and the whole f’n mess that is all of this just stares me in my face. If I stay busy I can avoid these moments… for now. There will probably come a time when I will have to face everything I am trying my best to avoid. I dread when that day will arrive…
I just want to say that we got through Easter and Mother’s Day. They didn’t even feel like holidays to me. They were just two more days in the life of CNS Lymphoma that happened to have a little better food and dessert. They certainly weren’t happy days… how can you have a happy Mother’s day when your Mom is dying right in front of you? Yay – can’t wait for Mother’s Day next year and every year after that when I get to be reminded that my Mom is gone. Oh what’s that Hallmark? How many advertisements can you show for Mother’s day cards to rub it in my face that I will never buy another Mother’s Day card for my Mom again? Is it normal that I think this? Does everyone who loses a parent think this way? Maybe I would feel differently if I had children of my own? I don’t know… I am probably just thinking this way because the pain of everything is so raw right now. Maybe by this time next year I will feel differently. I guess I’ll have to wait to find out.
Also the Race for Hope-DC was held on May 4, 2014 and I had a wonderful turnout for my team… 25 people! Thanks to everyone who came out to walk with me and those of you who donated online. The Band Together for Brenda T-shirts were a big hit! The weather was perfect, my team was awesome and I didn’t even have time to be sad. This day makes me feel like I am finally able to do something towards finding a cure for brain cancer. I may be one of thousands of people walking and my $40 entry fee may be lost in the millions that were raised for this walk and I may not know what that money is specifically going towards but it made me feel like I was doing something to prevent brain cancer.
Race for Hope-DC 2014
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