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.

Sick and Tired of Being Sick and Tired

I must apologize for the brief break I needed to take from my blog. After receiving the news last month about my transplant being postponed indefinitely (or until I get back into remission), I had trouble accepting the setback and needed to rekindle my flame of strength going forward. The first round of chemo since I came back from Europe was rough seeing as I wasn't mentally prepared for it. Not only was it mentally draining, but physically it made me very weak and for my first off-chemo week I became very sick with a nasty cold.

By the time I started feeling somewhat better, I went in for my second round of chemo. This round wasn't too bad...mainly because I celebrated my 25th birthday (which I wasn't originally planning on doing at home) and had the perfect distraction of decorating the house for Halloween...even though we hardly got any trick-or-treaters. The much-needed distraction started to pick up my spirits, and so I decided to call my oncologist to set up the "Take Two" PET-scan. However, the response was not what I was anticipating at all.

My oncologist started asking me the usual questions..."How are you feeling?"...."Have you noticed any new lumps?"...etc. I told him that everything was the same as usual and that nothing new had shown up. Besides the little hiccup of a cold and the usual fatigue, I felt ready to take on the PET scan and get the show on the road. Then after a brief pause on the phone, he said, "I think it would be best if we proceed with one more round of chemotherapy."

I wanted to throw the cell phone across the room. He explained that right now he's very optimistic about how I'm responding to the chemotherapy but that Johns Hopkins is very uncertain about moving forward, in fear that I am becoming immune to the treatment. He thinks that if I were to proceed with the PET scan now, it wouldn't be convincing enough to sway them otherwise. So he suggested that I do one more round (another 2 treatments of chemotherapy) and then set the PET scan for the 28th of November. 

Knowing and trusting my oncologist 100%, I agreed to proceed this way even at the risk of weakening my resolve. So instead of preparing for a scan this week, I'm stuck at home once again recovering from the fatigue plus the additional side effects from the flu shot I got at the same time as chemo this past Friday.

I hate feeling bored and useless. I hate this constant lingering around and waiting for a finish line that's only pushed back further and further away. I have no regrets, but the circumstances are not ideal. I'm incredibly grateful for the support system I have between family and friends, but I feel like I'm missing something. Once again I feel like I'm trapped inside a glass box watching my friends move forward to bigger and greater things...jobs, weddings, families, etc...and I'm just stuck. With the lack of energy, I'm not exactly able to go back to work. Going back to school would be very risky...practically impossible if I somehow go into transplant at the end of the year. So all I can do is wait.

If there's one thing I've definitely learned these last few days...it's that I'm sick and tired of being sick and tired. So I've decided to focus on the little victories of every day. I've been studying and perfecting my French. I've even resorted to taking free (non-credit) online courses provided by Yale to prepare for the day I (hopefully) do go back to finish school. I try to maintain my strength by doing small exercise routines every day. I'm trying to read more, and I'm catching up on missed movies and shows. Whenever I have the strength, I try to go out and do something productive...whether it's going grocery shopping or hanging out with a friend. They are small goals but I'll do whatever I can to pass the time. It's the only way to feel close to normal.

"Life doesn't discriminate between the sinners and the saints; it takes and it takes. And we keep living anyway; we rise and we fall and we break and we make our mistakes. And if there's a reason I'm still alive when so many have died then I'm willing to wait for it." 

                                                ---"Wait For It" by Lin-Manuel Miranda