Monthly Archives: April 2014

It Has a Name…..


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





Monday 4/14/14


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 be 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.

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.

04/12/14 – What Started This All


It occurred to me tonight that I haven’t really said what happened to start all this in motion. I have said what is going on and that it was sudden (yeah, that is an understatement).

It started on last Tuesday evening. I was just about finished with work and I reached kind of behind me to grab the phone and realized that as my hand went past my face to the right, my hand disappeared. Ok, that was weird… so I slowed it down, holding my hand to the right of my head and moving it back (your peripheral vision) to see how much was gone. Turned out that even before I got to my face, my hand was missing. Ok, very weird…but I am not a panicky type so what I did was to get online with Group Health (out HMO insurance) and make an appointment with my eye doctor. I was convinced (really!! I’m not making light og it, I really was) that I would go, he would say take these eye drops and I would be home. I did mention the missing hand thing on the online form and they called the next morning to set up the appointment. They seemed much more concerned than I had about this but honestly, I still didn’t think it would be anything bad or that couldn’t be fixed with eye drops. I got an appointment for 4pm and that was it. I worked that day and the missing sight bugged me a little of course but I made some adjustments and that was it. Can I mention that I drove myself to the doctor? Yes…well…ok, this was more challenging. We live in a very small town and we have no 3-4 lane roads, just 2 lane. It wasn’t until I got to Silverdale (WA) where there are double lanes that I realized that this would be a problem with driving and I should have taken Jennifer up on her offer to drive. I had to change lanes to get into the doctors office and had to completely turn way back to make sure that no one was beside me. I did it but you know, that eye doctor would be giving me drops so this will go away so I happily parked and went in.

I have a really good eye doctor and he did lots of tests. I told him it was probably just something for drops and he looked in there, went out of the room, looked in again etc etc. He is very patient. He finally came back and told me that this wasn’t my eyes. Wait…what. Of course it is. Silly doctor. He thought I might be having a little stroke. Wait…what? Silly doctor. nd he said I need to get up to the emergency room and who could take me. Wait…what…I have my car….. OK, I called my sister who doesn’t live far and she came. We went up and they were expecting us. It was at this time that I noticed the concerned faces around me and I got thinking this might be more serious than I thought. I tend to blow things off and roll with the punches. Maybe this was going to be something I couldn’t blow off and that tends to get my attention a little.

By now, the family is beginning to trickle in one by one and they are taking me for a cat scan. I have to say here that while I am seeing concerned faces, I am laughing and joking with the doctors and nurses (who, on hindsight, must think I am either faking or nuts). I don’t get upset by medical stuff having been through a lot in my life. So I am having a cat scan but joking with them about my head being empty….

So the results come back and this I remember pretty clearly. A nice doctor came in and said that they had found a mass on the back of my brain. Wait…….what…wtf….but I talked to him, I asked questions, I laughed and said well that is a bother but I held it together. He told me he had ordered an ambulance and they would be taking me to Virginia Mason Hospital (I could type in wait..what again but you must know that is coming and continues to this day).  I do have to say at this point that I never really get upset about things and I am very cheerful but the second that door shut I threw both hands over my mouth and screamed and started to cry. I do have to say that I did this silently as I could because I didn’t want to disturb both my family or the other patients but it was such a strong feeling to just scream and scream that I had to do something. But my family, who is not used to this kind of behavior out f me must have been shocked. Linda later said I went from a cheerful bird to screaming in a second and I feel bad about that. Honestly, it was never on my radar to ever get such news and I simply broke down. I could not have stopped it and I think it probably helped. But I did it all silently and looking back, it was a weird moment in my life. By the time the doctor came back with the trips plans all nailed down, I’m sure he could tell I had cried but I was back to being a cheerful bird and remain so pretty much through it. Don’t get me wrong, I have cried, sometimes in the middle of sentence (OFTEN when reading the posts on face book). It would be crazy not to cry and I do so.

So that was last Wednesday and here I am on Friday night (well. I guess it is Saturday morning) and I haven’t gone home yet. I never got to make plans. Before I left for Seattle, I got Jen to make a list of what to bring to the hospital, what to feed to what bird and fish, that she will have to find my passwords and pay the bills (do you get the idea that I am fully in charge of everything at home…I am and please don’t you let yourself get to this point  yourself, delegate now and make a list of what each pet eats). I could tell Jennifer was very upset but her thumbs flew over her phone and she took down everything I was spewing forth. Kevin and Mom kept saying it will be ok, just lay back down but I had to get it all out because I am truly the only one who knew and and it was important to me.

So here we are. I was so lucky to get a wonderful doctor assigned as my surgeon and he will be with me a long time. I have to say that Virginia Mason Hospital in Seattle is the best. They were and are concerned for my well being but what means the most to me is that they were also concerned about my family and took such good care of them. That means a lot to a control freak who suddenly has to maybe pay attention to her health a little….whatever…

Thanks again for listening. I tend to get long and rambley with my writing but it is me. I will keep up the updates. for those brave souls who wish to follow along. The future of treatment still holds a bit of the unknown and in the middle of the night gets scary. On the upside, I have more than a little weight to loose and expect it will be coming off…along with my precious long hair but that is for another blog post…hehehe. Something for you all to look forward too




Update – 04/11/14


It has been about a week since I said “I’m having surgery to remove a mass in my head” until now. Lot’s has happened since then and I thought I would update.

It is weird in the online world to ever know if someone is reading this or if anyone could possibly care about the update of a perfect stranger. I think about it a lot when I write a blog post but even more now I guess. I love to write and I am an open honest person who loves to read blog posts, especially those who are written about people’s everyday lives. Maybe I am just nosey.  So, in the absence of knowing if anyone is interested, I will just forge ahead assuming all are! Yes, I know that is crazy. Such is the online world.

So, I have had surgery on the back of my head and even though we haven’t had the formal meeting to tell us of the pathology we do know it was/is cancer. Pretty darn scary stuff but I am not the kind of person to fall apart and feel sorry for myself so I am forging ahead and am ready to do battle. It might be good to say what kind of person I am right now. Most who read my blog (those brave few) know that I knit and spin. They know we have a new truck after trying to duct tape the poor old truck together for years and that I love to write. They have read about the fiber shows I have gone to and my chihuahua. And tat I love all things Disney. I am also an exceedingly happy cheerful and strong person. I think this will help in the months of therapy to come. I hope I can help others who may be going through this too, not because I know it all but because I think a lot of people when scared often just need someone to say “hey, I am going through this too and I care a lot, lets just chat”.

I have been online reading others facebook posts and blogs for years and have, until recently, been a lurker. When all this happened, I decided maybe it would be good to stop lurking and just talk so I posted my update on facebook. I have a lot of people who I follow and who follow me and so I posted what was going on. Most of these people I know only on facebook by name although some of my precious Disney friends I have met at the PNW MouseMeet. Well boy was I honored, amazed, surprised and humbled by the outpouring of support I got.I can’t tell you how it helped and will help in my recovery. I have gotten private messages from people to tell me that they have gone through this too and what I can expect. Everyday since I opened up, I have cried because of the love flowing out of my little laptop. And I don’t dry often! This is a world which I will rely on and I do so hope that I can help someone myself through their journey.  I think this kind of support is going to be as important to me as any medicine. I stop and think about it often durng the day and I hope these wonderful people will read this blog and know what a HUGE HUGE difference it has and will make to me. I keep thanking them and they are probably getting tired of hearing it but I am going to keep saying it because it is that powerful to me. One of the other things about an online life but especially facebook is when to tag and when is it weird and to do so so that people don’t think I am trying to just get readership…I am not.  So when this gets posted to facebook, I am going to tag people. If you really don’t want me to, PLEASE let me know and I will stop. I just don’t know what the protocol is on such things and I will always assume this might be interesting to someone but do know that the last thing I want to do is flood your facebook with silly “tags”.

I guess this is enough for now. It is 2am on friday morning and I had to take some pills (holey cats, how can they give out so many pills!!) and I should go to bed. I have been staying with my wonderful sister since surgery and have been getting totally spoiled. I really want to be home but for now, I need to be here and Kevin needs to be at work and my being here lets him do that.

Thanks so much for listening and I will be blogging much more but not just about this. I will get back to spinning (which I did this morning and was thrilled to find that I still could) and knitting. The knitting is harder, I was working on this gorgeous pink lace sock and the pattern was just too hard to follow for now so Linda found me some yarn, large needles and a simple sock pattern and I am off and knitting again. It is great therapy.


Some quick photos


I am having surgery today to remove a mass in my brain and I thought I would post some photos I have been meaning to get up up but have not found the time. This surgery came on very fast and has made me realize that there is no time like the present to do things.

I realize now that I need to prioritize my life better. In the weeks to come I will take about my recovery from this but for now, here are some photos


This is the yarn I am making from the rolags from a prevous post


A new sock. I am actally farther along on this week. I am really pleased with them!


My owl mitts. I have the eyes on now but dont have a picture and being in the hospital, I can't get one. I will when I get out.


Have to get a Chihuahua picture in of course! !!

That’s it I guess . I was going through my pictures and found some that I thought I hadn’t shared so there they are. It’s 3am and want sleeping. I am doing this on my phone so I hope it is going to look OK.