Friday, November 14, 2014
This weekend marks 1 year since I was in the hospital for my falls. Of course they were just monitoring me and doing tests then sent me home. A few weeks later I was progressively getting worse and that is when I had my first surgery...no cancer was diagnosed at this time.
Fast forward to today, I am diagnosed with a cancer that I feel my doctors have no idea what to do and are just trying different things. If a successful story to them is "it's not growing", what is the downside, it is growing? And I spent all this time waiting for them to say "the dust hasn't settled." It's been 4 months...I'm pretty sure the dust has settled.
All I want to hear is that they have a plan to get the "slime" out of my spinal cord and found a way to fix my nerves and I wouldn't have to rely on a cane, walker & wheelchair.
It is so selfish of me to feel the way I do when people get to go out and live their life. I'm stuck at home or stuck feeling like great lets make sure the wheelchair and the walker are packed. I've been forcing myself to get out more and act as normal as possible but deep down I am fighting through being uncomfortable, seeing stares out of the corners of peoples eyes, or the pity look. The last thing I need is pity.
Cancer has definitely changed my life. Funny I feel it was for the better. I appreciate everything that much more. Even when I get a greeting card in the mail I put them on my table and read them again throughout the week. Simple things like that make my day. I woke up today to "I love you" post-its throughout the house. He knows I'll leave them up until they fall off.
Last week we had our 10 year class reunion. I can't believe it! I had such a great time reminiscing on memories and laughed so hard I cried. It's been a long time since that has happened. It's great knowing that even though we don't talk everyday my friends from elementary school are still there for me. We may have went different ways in life but it's such a comfort...these girls went through times we thought were the hardest of our life back then to actually having to face a real hardship with me.
Thanks for reading my babble...I just hope good news comes soon. We submitted my results to John Hopkins and are waiting to see if my case is something they will look at. I'm hoping to hear some time next week.
Your love and support mean so much to me, thank you!!
"No matter what it is, you're going to have the bad days, but if you have hope throughout, you won, no matter what the results. Life is so beautiful." Diem Brown
Tuesday, November 4, 2014
I had my rescan on Oct. 30 and should have put money on what the dr would say. Nothing is growing, nothing is shrinking. We are going to hold off on treatment and wait another 7 weeks and do another rescan. One positive was that my brain looks normal. We were told my case was going in front of the tumor board again and would be called Monday evening....no phone call. Which equals very frustrated family and me! I realize that a dr cannot devote all of his attention to one patient, but when it is such a rare diagnosis would think they would put a little more effort into it.
I know my last post was a little emotional, and who knows by the time I am finished with this, this it may be as well. So what have I been up to? Well hunting season is in full swing, so I am a weekend hunter's widow. I have been making more of an effort to do dishes, make dinners, and am making soups to send to camp. So far the boys enjoyed taco and potato soups. Jon and I continued the tradition of carving pumpkins...being artistic he carved Remi & I settled for an upside-down jack-o-lantern.
I'm still rocking physical therapy 3 times a week. I am starting to walk on a treadmill. I go a brisk 1.0mph and last about 3 minutes. It tires me out fairly quickly but I feel like its easier to relearn walking this way then hold on to someone and the cane. However, without them I would not have met my goal...walking down the aisle for my bf's wedding. Jon and I did it without any troubles. I feel like I beamed the whole way down and up because we did it. Now I just need to set a new goal...
With my therapists, their families and some of my family we completed a walk for Vision Walks. We walked (I was pushed) along the river in honor of a little girl with Usher Syndrome. Usher Syndrome affects hearing and vision. It's was so inspiring for me, seeing everyone walking around with smiles on their face, embracing life. I just wish bad things didn't happen to good people.
Its times like these that make me realize a lot about life. Even though I hate the fact that I have cancer and how much it has changed my life, in the end I will be thankful for it. It just makes me realize how important being positive is, not letting the little things get to me, how important it is to be brave and stare fear in its face. Some relationships will never be the same while others will have a deeper meaning. It is crazy to think that tomorrow will be the 1 year mark since my first fall. Although I have had many falls, I always got back up. I wouldn't have gotten back up if it wasn't for all the love and support I have received.
I will keep everyone updated as can be. I feel like a sitting duck! Thank you again for love and support.