About a year ago on September 12, 2012 I was diagnosed with a pulmonary embolism (PE) which is a blood clot in the lung. I had absolutely none of the classic symptoms of a PE. Instead my blood clot was found during one of my routine PET-CT scans to check on the progress of my cancer. For some reason people with cancer have a tendency to develop blood clots and I just happened to be one of the lucky ones that got one. I remember getting off the shuttle at the UCSF Parnassus campus and starting to walk to my sister’s flat when I noticed I had a voicemail. It was my nurse practitioner asking me to call her back because “it was kind of an emergency, but kind of not”. At this point I was really nervous thinking that maybe the cancer had spread instead of getting smaller so I called her back. She then told me that I had to go to the Emergency Room to start a regimen of blood thinners because I had a PE. My Lovenox Syringe So, I went to the ER where they gave me my first shot of Lo...
I had a PET-CT scan yesterday and guess what? I am still clear! I would love to say that I am officially one year cancer free but doctors only like to say NED. I have no evidence of disease at this time. I am soooo excited with this news! Every time I have a scan I’m scared that this will be the one when they tell me “The cancer is back” but each time I’m surprised by the good news. I feel like I have been so lucky health wise despite all the long lasting side effects that I feel every day. I’ll take the fatigue, tingling and muscle twitches as long as I get to be here for my son. This reassures me that I made the right decision to enter a clinical trial especially since it was only at the Phase I stage. I was so scared that I had made the wrong decision because in a Phase I trial they are still trying to figure out correct medication dosages and learning about side effects. We are true guinea pigs at this stage because they’re still trying to figure out how safe these drugs are. I am...
I had my fist appointment with my new oncologist today and it was kind of sad. I miss my oncologist at UCSF. She has been with me on this journey for 5 fucking years and it's hard to say goodbye. I hope that one day we can meet again cuz she was awesome. She got me where I am today. I know that it's just luck though. Not everyone responds to treatment so well like I have and I admit that I feel guilty about that. So many friends in my support groups have died and I'm still here. We really need a fucking cure. My appointment went smoothly for the most part. My new oncologist tried to prescribe decadron which is a steroid but I promptly nixed that. I DO NOT want to get on steroids unless absolutely necessary. I don't like the way steroids make me feel or the fact that they make me fat. It's sounds stupid, I know. But right now I feel relatively well and to me steroids are a last resort. I do not believe I need them at this time. I've been doing fine without them...
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