After a year-an update August 2016

I have many journal entries that I have written in the past year that I just have not have the courage to post, and I recently at least had the courage to write one explaining why I became so uncomfortable sharing my story and my thoughts in such a public way… but right now I think the first thing I post after so long, should be an update about what is happening in my cancer journey and why even though I have moments of happiness, it’s been increasingly harder and harder to achieve them

Please read this first…..

In order to do that though, i do feel I have to touch upon one important topic that has been on my mind a lot lately and can really get in the way of people understanding how difficult and painful so many things are for me….and that is social media. It does not show you all the aspects of my life. It can be very deceiving in many ways and it is very easy to take what you see in pictures at face value, and not think about what is happening before and after that picture was taken. 

 When people hear that I am not feeling well, or have heard my cancer has spread, or have heard I couldn’t get out of bed for a week from treatment, or that the side effects of so many things caused me to to not be able to eat in five days….often the first thing they say is, “but you look so busy and happy on Facebook! (10 pictures of the same thing) You did that headstand! (And then went home and cried for four hours because I was in so much pain) You looked so pretty in those pictures that were posted!( filters are amazing) You are always smiling with your friends! (Because are you supposed to show the pictures when you are sobbing on their shoulders?) But you were out to dinner last week! (Yes, I stayed for 15 minutes) You were at the beach! “(Yes, laying down in the shade instead of in my bed) Yes- those things are true. I have done those things. For the few moments I can actually climb out of my cancer, I push myself to the limit to try and do the things I love, because I need to try and hold on to who I was once for as long as I can. I will myself to do things some days, while fighting back tears from the pain, because in my heart I am scared that I will most likely never be able to do them again. I am more and more scared because there are more and more days when it takes me sometimes four hours to get up the strength to just get out of bed. Most days I barely have JUST enough energy to drive to the beach 2 minutes down the street and go sit in a beachchair.

 I don’t think many people have an idea about any of that-and a lot of why they don’t, is my own fault. I don’t share those dark moments the way I share the bright ones, because I don’t want to depress everyone on social media and bring them down. I don’t take pictures of the dark moments because I try and let them go after they happen and can’t bear the thought of being reminded of them.

Update….

I was literally frozen for hours at the doctors office last week and then had treatment, which was hard because I don’t know if it’s even worth it. There is a little good news(but relative, because MRI’s are really what show the spine and I had CT and PET scans) but more bad than good from the scan. The “good” news is, my spine tumors look stable-so they aren’t crushing my spinal cord, but they are causing numbness to my left foot and leg. The bad news is, the cancer in my groin area and in my lungs has grown. The cancer in the left groin area is blocking fluid from traveling up and down my leg, so on top of my spine causing numbness, this is causing my left leg to swell up to 7x its size. The stretching is soooooo painful.

My cancer seems to be growing at a slow rate for the most part, so since my cancer has only grown 4%, the trial drug company is allowing me to stay on the trial(anything under 20% they apparently see as good news) my oncologist wants me to stay on it because we she thinks we literally have no other option right now- so having something that can keep the cancer growing slowly, is better than having nothing at all. She also said that one other person on this trial had their cancer grow on the first scan and then shrink on the second scan.

 I am going to see what the next scan shows, and in the interum i am talking to some amazing people to see if they have heard of anything in the pipeline and if they have any other ideas up their sleeve- there has to be something, there just has to be.
This is not at all what I wanted to hear, but I had a pretty bad feeling about this scan. I think after four years, I know my body very well in terms of what can indicate it may have spread.

I am starting my new position next eek and spending this week trying to get my mind in a better place and also try and will my body to function a little better so I can make it to work. I am so excited about what I will be doing, just hope I am up to doing it. 

Thank you again for the years of love and support….it is carrying me through, even more on days likes today where I can not carry myself.