I thought I’d take a moment and update the happenings in the Room 1009 set. Obviously we are no longer physically in Room 1009, but for the sake of this website that’s where I wish all of this would stay.
Mom was able to go home on October 28th. While we wish that life would be peaceful and quiet for her in her own home, that isn’t always the case. Mom was quite the active woman and very involved in just about everything. There have been so many people who want to stop by to visit with her and she is not usually one to turn people down. Mom and Dad are both thankful for the love and support they have received from everyone in their community. We are also thankful for their help since none of the kids actually live in the same town as they do. Derek and I are the closest, but even still we are 30 minutes away. This has been difficult on Liese since she is the furthest away, in California. Luckily her whole family will be able to be here for Thanksgiving and Christmas so we can celebrate all of the holidays as a family.
So how is Mom doing? Given the circumstances quite well. Some days are better than others. She feels perfectly fine with the exception of the incision site gives her a little bit of pain and her head itches like crazy. The thing she struggles with the most is communication. Conversations with her are either really good or downright exhausting. The tumor is situated on the language and memory centers of her brain. She has very little short term memory and her ability to recall her long term memory is hit and miss. She says if she takes the time to really think about something it might come to her. But that could take upwards of 20 minutes or never. She has difficulty forming real sentences and often cannot get words to come out correctly. That all is depending on how tired she is. Last Saturday we held a very in-depth conversation about her treatment. Sure some things were repeated, but I didn’t walk away from it exhausted. However, Tuesday she got stuck on a question someone had asked her in which she should know the answer, but couldn’t even remember the word drum. She kept calling it an instrument or “thing you make music with.” She says that is the most frustrating part of all of this. Not being able to access information she should know the answer to.
She will also repeat the same question multiple times in a short time span. Dad was gone for about 45 minutes and she asked me about 7 times where he was. This is part of our life now. Her ability to hold onto that type of short term memory is not likely to come back so we will go on repeating as many times as she needs us to.
I mentioned treatment. Treatment starts today. Today will shape the next 42 days for her. It will also give us a clue as what to expect for the next year.
Mom has Stage 4 Glioblastoma Brain Cancer. There is good news and bad news with this kind of cancer. The bad news is that it is a fairly aggressive form of cancer. It likely grew rather rapidly over the past 6 months which is why her symptoms progressed so rapidly. The good news is that this type of cancer does not spread to other parts of the body. It is also a highly researched form of cancer with specific treatment protocols.
Today (11/11) Mom will go in at 11:00 a.m. for her first round of radiation. She also starts chemotherapy today. She will be taking Temodar at home. The radiation is 5 days a week for 30 treatments. She will go with that until the 22nd or 23rd of December (depending on if she has treatment on Thanksgiving or not). She will take the Temodar 7 days a week for the 42 days. Once that is finished she will have yet another MRI on February 16th. They will then double the dose of Temodar (assuming she is reacting well to it) and take that for another 2-3 months one week a month. After that, they will up the dose again and she’ll take that one week a month either until next November or for a year. I’m not sure which it is. In either case, it is a long road ahead of us.
With any luck she will have minimal side effects. However, we are preparing for the worst. She has no expectations going into this so that is a good thing. She won’t be disappointed if she reacts badly, but she’ll be pleasantly surprised if she does well. The big thing is that she really isn’t terribly afraid of any of this.
We have a prognosis from the radiation oncologist, but I’m not sure I want to share. I don’t want to think in terms of timelines or what’s left. I have today with Mom and that is what matters. She and I take the time to laugh and enjoy the moments we have here and now. I look for the one good thing each day and that is all that matters to me.
So send some good thoughts to her today at 11:00 (pdt).