I find myself 2.5 weeks after my last post having said very little. My apologies for those of you looking for news here, since I have not provided you with any on this forum. There is not much news. I have completed my two scheduled cycles of ICE chemotherapy, and completed them with very little in the way of pain or inconvenience. Sure, my hair fell out 2 weeks after the first round, but I’ve had absolutely no nausea. I’ve had some fatigue in the week after Day 1 of each treatment, and also low blood counts in those weeks that made me take some precautions to protect my weakened immune system. Beyond that, I’ve felt just like my usual self in terms of energy!
As originally scheduled, my PET/CT scan will occur now that these two cycles are complete. It’s scheduled for July 5, and I will discuss the results on the 8th with my oncologist. For those of you who are curious, the PET scan specifically can measure if there are living cancer cells still in your system. You fast for 6 hours beforehand, then they inject you with a radioactive glucose. You lie still for an hour (so that you’re not sending the glucose to your muscles, but instead to the areas that take up glucose quickly while your body is inert – namely, your brain, and cancer cells. They even tell you not to read or watch anything in an effort to minimize your brain activity! Cool, yes?), then you go lie still inside the very small machine to be scanned for the results. If there’s cancer present, it will glow like little yellow/red balls of fire inside a picture of your body. My last scan in February had a fireworks display in my armpit.
So far, I’m suspecting that those delightful glowing monsters haven’t gone anywhere after being exposed to the ICE. I can still feel some lumps. I still have twinging pains in my armpit. I have the crazy Hodgkin’s itch that I only got for the first time in January, when I was relapsing without realizing it. Overall, my body is presenting me with lots of things that give me more pause than hope. And this is a difficult thing to deal with, because I feel so good, and I want to be happy and positive and enjoy all of this energy, because I could be facing an unknowably long existence of fatigue that I’ve never seen before for more than a week at a time. But the reality of a future where I’m more permanently ill, whether on palliative medications or bouncing between short remissions and intense treatment periods, is very nigh. And the day of reckoning, as it were, is a mere 2 weeks away.
If ICE works, people tend to be much more likely to respond well to the auto transplant and be in a more permanent remission. If ICE doesn’t work, people’s long term survival likelihood starts to drop. It means your disease is stubborn, and won’t want to go away as easily. It means anything from imminent death to years upon years of continual treatment. And to me, right now, as a selfish and perhaps naive 25 year old, anything short of remission is unacceptably substandard for the way I want to live my life. I don’t want to live a life of continual hospitalization while I feel physically unwell most of the time. I don’t want to go through years of treatment only to learn 2 or 5 or 10 years down the road that we’ve exhausted all of the options and the life we’ve been working so tirelessly to save is doomed.
Would I rather give up now and crash my car into the side of the highway? Of course not. I am on board to do whatever is necessary to be well and kick cancer in the ass until I’m well.
The problem is, I don’t know if that outcome is, or ever will be, possible.
From my brief experiences reading about people who have gone through relapses with Hodgkin’s, it seems to me that I haven’t found any examples of people who have been in a successful long term remission after needing additional treatment after ICE. I could be wrong. As we know, the Internet is a place that self selects for people who need a voice, or have extremely bad cases, or aren’t able to be out there living life without a care (like those lucky remission bastards, god love ’em). But all I can think right now is that I’m doomed to die after a miserable few years. SO – if anyone could be so kind as to hunt down a blog or post or whatever from someone who needed additional therapy after ICE failed AND has been in remission at least years after a transplant, I would appreciate it 🙂
Other than this low moment, I am trying to think lots of good things, and it has been wonderful. I’ve been filling my days with exciting things. I’ve been draining my bank account quite extensively on activities I deem necessary to my well-being (like going to play tourist in Chicago, or eating delicious gelato). I’ve been, in short, busy out living my life and not posting. Not that I don’t think of you all and your support. I’ve gotten some wonderful words, gifts, and visits from you all, and I appreciate them so dearly.
I will endeavor to post more tomorrow as well, but for my mental well-being, I can only do what makes me happy in the moment right now. And that might mean blogging. Or it might mean some other adventure. We shall see. Goodnight!