I started treatment this Monday, this is my third day. I am doing both Chemo pills and radiation at the same time. This will continue for 7 weeks (!!) and then I will get a month off to recoup. After that, I will start the chemo for a week (Monday through Friday) and then get 3 weeks off before starting again and this will go on for 6 months. Yikes. The treatment that is for 6 months will be a double dose of the chemo drug I am taking now so the side effects will be worse. Knock on wood, so far all I have had is nausea but it takes about a week to start seeing any so I’m not out of the woods side effect-wise but I also may be one of those people who breeze right through it!! That’s what we are all hoping for. The nausea was worse yesterday but I think it will be a matter of finding the foods I can eat and to have very small meals. It is a process.
The radiation facility that I am going to is in the Harrison Hospital in Bremerton and it is just beautiful. So serene and the people there are all so caring and kind. I could not have asked for a better place to be doing this.
The room that I go to for the treatment is your basic room I guess, until you lay on the table. Above you is the most wonderful night sky with clouds and twinkling stars!! I want one over my bed at home!! It is very relaxing.
What is not so relaxing is the face mask they made to keep my head still. It was a flat mesh with a frame around the outside with screws (to hold t to the table). They soaked it in hot water to soften it and then pressed it over my face and down to the table to secure it. The technicians did a great job of molding it so it does its job but is comfortable too. And it is comfortable. The problem is that I am claustrophobic and this mask is right on my face and screwed down so I don’t move. I asked if there was some way I could get their attention in case I start feeling sick or have something else happen. They were really nice about it and explained that they had cameras on me and all I had to do was wave my hand and they would shut off the machine and get to me. That was all I needed, was a way out, and I was fine. The treatment doesn’t take too long, maybe 5-10 minutes so not bad at all.
I am also doing chemo treatment with pills at the same time. So far I have had a lot of nausea from about noon to 4pm, so again, not too bad. Today I am trying to eat very small meals and very bland food and I think it is helping. I started with some soda crackers then about 20 minutes later I had some applesauce. After 20 minutes more I made a half peanut butter sandwich (without jelly of course). So far, so good. I am feeling a little bit nauseous but not too bad. The other thing I am doing is wearing sea bands full time and that might be helping too.
So that is what I have gone through so far. I have heard of people who feel much worse than I do so I am lucky. I’ll keep you updated on this but I hope to also get back to my usual. I am thinking of re-designing my blog and actually branch out and have pages for topics. I will have to get the dummies book out and see how it is done but if I can figure it out then people can choose what they want to read instead of this being all over the place. My mind tends to be all over the place so it didn’t occur to me until a couple of days ago that it might be better to be a bit more organized.
I hope everyone is having a wonderful day and thanks for reading this!!
As a lot of you know, yesterday we went to Seattle to find out the pathology (a name for this tumor) and what the next steps will be. We didn’t get the news we were hoping for in that this is a very aggressive form (a glioblastoma) and that it is a fast grower. The doctor thinks it has only been there for 3-4 months. I certainly did not notice anything until I lost the peripheral vision and I went right in. So, shit.
I have an appointment on Monday with the oncologist and they will be starting treatment right away. I still don’t know what to expect with any treatment but we will move forward and find out. I think we are all pretty numb still but today is easier than yesterday. Kevin stayed home and it was just us today and that has been really wonderful; just what we needed.
I wanted to let all you know what is going on not because I am feeling full of myself and think everyone must know but because I think you do and that makes all this easier. I’m sure I will blog this whole thing but it won’t be all just about cancer. I do have other interests!! Haha I am going to tag you so you know and then I promise I will try not to again, this pops up on my facebook page so you can find them there,
I will try to be my usual cheerful self tomorrow. This is all so damn hard, not for me but for what it is doing to my poor family. I told them all how sorry I was but they don’t understand why I am saying it. That will always be the hardest thing on me, to watch my family be so scared and unhappy.
The fight begins
This will be a big week for “going forward”. Not that last week wasn’t big too…yikes but I am hoping to get going on the fight rather than just recovering from the surgery part.
I have an appointment on tuesday in Seattle with my surgeon but also with a nurse that will be a big part of my team. We are all writing down questions for her so we don’t get there and forget in the excitement. I expect I will need to see an oncologist before treatment will start but I think this will be the begining of all that too. So many qestions to be asked of course. I haven’t ever gone through this or known anyone who did. I had thyroid cancer in 1990 but they just took it out and sent me home. When the surgeon said that most brain cancers come from someplace else rather than originating in the brain, everyone figured they will find it camefrom my thyroid but that is not the case, it apparently started in the brain. My surgeon was hoping to know where it came from and seemed disappointed that he didn’t. I’m sure that it is a treatment thing but I saw it as not having cancer in 2 places. That is one of my questions to him, why is that important. And aof corse you poor people will have to read through a blog post as to why…hehehe. I find all this stuff interesting and always have. Doesn’t matter if it is me going through it or someone else, I am the first to ask questions and I google everything. While I wish this had not happened (mostly because of what it is doing to my poor family) I will enjoy the learning of it.
Because I am anticipating loosing my hair, (I’m not looking for trouble but the karma from all the warm olive oil and conditioner I have lovingly rubbed in over the past 50+ years…it is a joke in my family how I have taken care of my waist length hair). I finally googled chemo caps and found there are many many websites with patterns and so I am going to make myself some but I am also going to make a bunch to take with me to the treatment center. Not everyone sews and I think it might be a good and therapeutic thing to do for others. I will have to probably make some that are dignified but most will be wild gorgeous colors like when I make Kevin’s welding hats ( something else that is legendary at my house, he has well over 300 and all of the flashy bright cheerful colors). I am looking forward to doing it.
Well, I guess I will close for now. I must say again how I have been so touched by how people have responded to what I am going through. I love getting all the messages and it has and will help. It totally makes my day!! I will try to get back to the posts about knitting and whatnot but this has been so helpful for me to write. More than you will know, so thanks for reading it.
This is my Mom. On May 24th she will turn 100 years old! Yesterday we got out all her pots that winter over in the garage and she is cleaning one of them in this shot. She lives here with my sister and it has been nice to spend extra time with her while I am recuperating. She has enjoyed it too.