Nov 1/14

Good Morning Team Awesome

There is so much I want to say there is so much inside me that wants to get out, but I’ve been struggling to blog this week. I have 3 posts in my head but I sometimes feel like I say too much and do people really want to see me post again? Then I got thinking this is my Facebook page and this is my spot where I can be me, share, reflect, ask, I guess if I’m posting to much people won’t read it but that’s ok because this is for me to deal with what I am going through in this cancer journey and I am willing to let you look inside my heart and mind. (Sometimes scary lol). So there are lots of posts coming this week, you have been warned lol.

The best way for me to start is to tell you about yesterday and then I will fill in from last Saturday’s party. So, Thursday I had a CT scan and then an appointment to see my oncologist yesterday. My appointment was at 9:30 so we needed to leave by 8. I was awake around 6 so I let Brad stay asleep and thought I’m going to try getting ready by myself. Now I know you guys are thinking really? FYI I have not been able to dress myself completely in 4 months so trust me this was a big thing for me, I’ve really only been out of bed and doing things and getting stronger in the last week. So with limited mobility and very shaky hands and balance I struggled and got dresses like a big girl....lol I was so proud of myself and when Brad woke up he was surprised and happy for me.  When you lose so much independence it is really hard on you so when you start gaining little things back you don’t take them for granted... I was pretty hot yesterday with my new henna-ed head; I even put some makeup and earrings on. It was the first time in 4 months that I actually didn’t look in the mirror and shudder at how bad I looked. I think the swelling in my face is starting to go down. So I was ready to go and face the music with my doctor.

So going to the cancer center with my new henna-ed head was a little nerve racking, I like the henna for a change but never know how I will be received, I know that should matter but to me it does still. I never want anyone to think what the heck is she trying to pull off. I’m not that secure. But as I went in people start complimenting me right away. The nurse grabbed me and pulled me in the nurse’s room showed it off, people in the waiting room were going on how beautiful it was. It gave me a lift and I needed it. See I feel like when people see my bald head they see a sick person but when they see the henna its cool, different and they see it first as opposed to a sick woman. So I am pleased with my henna but I sure can’t wait for my hair...

It is always a hard day waiting for results, I am always hopeful and excited to see my doctor’s face, I can tell right away if it is good or bad. Brad and I sit there holding our breath waiting for the doctor to come in. As we are sitting in the doctor’s office waiting for him, my cell phone goes off and I see it is a call from PEI. I was wondering why my dad or cousin was calling as they knew I was going to the doctors and I said I would call them when I knew anything. So the phone rings and I answer the phone and I hear “Hi is this Hope?” I say “yes” then he said “Hi this is Chef Michael” I was totally surprised and felt happy to know that someone that renowned would take the time out of his busy day to call me. It was a thrill to hear his voice and to be remembered by him and his staff. He proceeded to tell me that he and his staff follow my Facebook and that I had made an impact on them in the short time that I had spent with them; somehow I inspired them and filled them with hope. This is always the part I struggle with I don’t know how I inspire people and yet I hear it every day from strangers that follow my blog.  It is really hard to understand this concept as I don’t know what I do or say that inspires people; I just speak with my heart and share. There is a lot of pressure when people say I inspire them because I am no one, I am just me being me; I have no great schooling or training I just speak from my heart. Maybe that’s how God is using me, maybe he takes my jumbles thoughts and words and allows them to fall and touch who they need to.  Anyways later that day I received an email from Chef Michael telling me that he’d had dinner with Astronaut Chris Hadfield Thursday night and they were talking about Canadians that inspire them and Chef Michael talked about me with him. What an honour. Thank you!

So then my doctor came in and I knew the look... Not good.  He proceeded to tell me that my lymph nodes had grown slightly, he said don’t panic yet, but really every time I have come the scans have been great for my lungs, heart and lymph nodes. My lymph nodes have been normal since February so for them to grow suddenly bothers me greatly, I knew deep inside that they were acting up because of me going into anaphylactic shock two weeks ago. So Brad and I had many questions for him. He said that my wonder drug could be showing signs of failure. I have another MRI in 2 weeks and then an appointment with my oncologist in three weeks. We will see what my brain tumours are doing (hopefully sleeping).  If my drug is failing the next proposed treatment would be 6 weeks of chemo and then getting approval from the pharmaceutical company that is making the new drug that I need, that they would be able to give me special access to it even if it is not approved. As it will be the last measure to save my life.  I never wanted to do chemo but faced with what options I have I guess this is what I will need to do.  It’s truly heart breaking to think about losing my hair before it’s even all in as it just started growing really well in the last 2 weeks, I know it’s just hair but it’s another blessing to have it come back as it wasn’t suppose to. I am finally growing stronger and feeling better so to think about felling weak and sick again is really hard to face. But what are my options? I choose to live.  There is so much living inside me to do and so much I want to do it’s hard and scary to face the ugly reality that seems to be creeping in. I feel like I am somehow disappointing all of you when I tell you about this, you have been so great with your encouragement and prayers and I somehow feel like I am failing that I don’t have enough faith or something, but I really am trying hard. I want to live for many years, I want to be able to give back to the community I want to be used by God and continue to inspire people. Oh Lord help in my weakness! So at this point we will wait for the 3 weeks to pass and then make decisions. 

Last night was Halloween and Brad and I usually go all out we are the house with fog machines, out door speakers, 2 banks of 8 ‘black fluorescent lights on the hydro poles, remote controlled rats and much much more, but last night Brad (he had a very wussy teary day which he needed) and I were so emotionally drained we decided to let it pass and go for a dinner and a movie. We went out for supper and while we were there I decided I just didn’t have it in me to go to a movie I was so tired. Before we left the restaurant I decided to use the washroom. I sit down on the toilet which I had done several times that day, I just happened to notice that the “Big Girl” who had done so wonderfully getting dress in the morning actually for the full day had her tights on inside out......Oh Lord only me.....at least I didn’t moon any one like in Texas....lol  I still was dressed I’ll just have to make sure my hubby checks me before I leave the house. I am still thankful that I was able to get dressed inside out or not, I will be thankful for the little things and life and hey I can still laugh at myself, that’s a good thing!