Saturday, November 18, 2017

Acceptance Does Not Mean Defeat

Yesterday I went to what may be my last chemo for a while. About three days ago I was getting ready to go to bed and noticed that my collarbone felt somewhat strained...not hurting but like something was pulling on it. I ran my fingers down my neck to the location only to find fear and disappointment. One collarbone seemed raised like there was a mound sitting atop of it. At first, I thought I must be imagining it as it didn't feel like the usual marble lumps that I've had in the past, but as the fear settled in I could tell something wasn't right.

My first instinct was to try to rationalize it by saying I didn't know if it was something leftover from last month's growth and it's slowly fading away. But wouldn't I have felt it then? I'm not sure. All I know is that anything I feel at this point, with the PET scan just around the corner, is not supposed to be there. At chemo, I had my nurse feel it and she confirmed something was definitely there. We continued chemo as usual but I sense it will be my last. My oncologist was very clear the last time I spoke with him that if I'm not in remission by the time this PET scan is supposed to happen, then transplant is no longer an option. My body is rejecting chemo all together which leaves me no other option but a clinical trial which is still in its early phase with little odds and few statistics. Now I know I'm not supposed to pay attention to statistics, but the last time NIH (the facility doing the trial) gave me an option (immunotherapy) it had absolutely no effect on me. Why should this option be any different? People have actually died from this clinical trial and it's still very risky.

I sent my oncologist a desperate email 2 days ago with my concerns and begged him to see if there were any other viable options that could give me the same reaction as this past chemo and can still make transplant a possibility...but I am worried that this email will just return with a giant no. I'm still waiting to hear back from him. In the meantime, I've already taken the first steps towards this clinical trial and set up another appointment to resume the hormonal therapy that I stopped back in the spring when I saw good results from the chemo. I was really hoping to avoid going back on it since I gained 30 unwanted pounds alone from it.

Yesterday after chemo my strength collapsed and I broke down very hard from it all. I feel like this is all my fault. I know my doctor is going to tell me I should never have gone travelling to see my family because then this may have been avoided. I could be recovering from a transplant right now instead and looking towards at least a temporary remission. But instead, I didn't and these are the consequences I have to face. I still don't regret the decision I made because mentally it put me in a better place and I needed to see my family who have had my back through all this overseas. I needed it...but was it worth the risk? I don't know anymore. I feel like I just threw my life away and I didn't mean to.

That being said, although I accept the consequences of my actions, it doesn't mean I'm defeated. If I must abandon the transplant, then I will use whatever remaining power and strength I have towards this clinical trial. I have no idea if it will work or if I will survive it...but I won't go down without a fight. I want life. I want to move on. I want to finish school. I want to have a family of my own someday (which is something I've already fought against cancer through fertility treatment). I will not throw my hands up. The anticipated news still stings and God knows I've cried buckets since yesterday. I know there are going to be people siding with the doctor saying "this is what you get" and I respect it. But to those who still support me, I embrace and love you all.This fight doesn't end here and whatever happens, I will never stop until all of this is over...whether it's my last breath or a cancer-free life.

When I was in France visiting the Pantheon, I came across a statue with the engraving "Vivre libre ou mourir"...live free or die. I was so empowered by this and it's something I intend to go forward with this in my head.

1 comment:

  1. Checked in to see if you had posted tonight, but found this one instead. I just wanted you to know that you are one of the strongest people I have ever met and regardless of what your scan results were today, you will get through this. Keep fighting and stay strong. I will continue to keep you in my prayers.

    ReplyDelete