The Plan Continues

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!

Doom & Gloom

So. Radio silence for a week. Tuesday-Friday, I had some pretty positive days. I spoke with a nutritionist and former transplant nurse at LWC (Life w/ Cancer) about adjusting my diet to ensure I’m getting nutrients during treatment and beyond. I saw friends. I went to see Beth’s show, and wore a surgical mask in the crowd because I was as neutropenic (low neutrophil/WBC counts, thus no immune system) as an AIDS patient. I felt pretty darned tired, but also felt in control in a way, because my body was sick, which gave me hope that the cancer was dying. I felt no need to blog, because everything was progressing as should be expected. Some sadness. Some happiness. Some exhaustion. Chemo world.

Saturday, Dan & I went to the Tigers-Orioles game in Baltimore. I was really looking forward to this. Dan loves the Tigers like I love the Nats, and I spent days planning tickets, parking, how we could try to get autographs, what I’d wear to look like a Tigers fan… on and on. And I was having so much fun, and my brain was so distracted, for a few innings. And then all of a sudden, the fear snapped right back into place again. In the middle of doing something I love, that I had looked forward to for days, with one of my favorite people in the world beside me. And I couldn’t break out of it. The Tigers scored three backtobacktoback home runs, followed by a grand slam a few batters later, and it was still there. Simmering. Making me hate the crowd around me. I was sliding down into a depression, imagining that this would be one of the last times Dan & I could go out on an adventure. And what started this all? Checking the damned lumps.

They haven’t moved. It feels as though they haven’t budged, or melted, or shrunk a single inch. And I’m petrified that it’s all leading to the dark, scary place of ‘ICE didn’t work, nothing will work, I won’t be able to get my auto-SCT (stem cell transplant) and therefore I will die.’ Even if this is not the case precisely, I feel like I’m looking at ‘I’ll be on other drugs, maybe relapse after the auto-SCT, maybe try for an allo-SCT, but be bald and exhausted and miserable and grasping at straws for years until I finally do die because there’s nothing that’s worked .’

It’s a dark place. Having been to the light place, even if briefly of ‘I have a gift of an opportunity to stop and examine my life and go after my big goals while I have time and enjoy every minute of being alive’, it feels like a huge step backwards. And it’s a huge step backwards that I haven’t been able to shake. Not with board games, or Disney movies, or So You Think You Can Dance, or delicious food, or homemade cinnamon french toast, or creating art. And those are all things that I love, that make me happy. But inevitably, I’ve been able to get about an hour and a half max of mental distraction before thinking ‘Hm. You know what I haven’t thought about in a bit?’ and having it all rush back in like an emotional ocean that’s out to drown me.

I find myself trying desperately to fill up my days with things that might make me happy. Art. Walks. Baseball. Mom, Dan, and I are going to Chicago starting tomorrow night until Sunday so Mom & I can go to a business event and then Dan & I can play tourist. There are still adventures to be had, and I recognize that, but I’ve started becoming afraid of even the smallest tasks and outings, because I’ve been stuck in a mental path that seems to land me in a depression, regardless of how much joy I would normally derive from any particular activity.

Having typed all of that, I now feel much better because I got a call from a mentor found for me through Leukemia & Lymphoma Society (LLS)! She too was a Hodgkin’s patient who went through an auto-SCT, and she’s a year out. So we got to chat about doctors and support systems and such, and even jab each other a bit over the Nats-Braves rivalry (she’s from Atlanta). So that was a good call to get out of the blue and a good friend to have moving along the road.

Now, I will attempt, in my improved mental state, to go for a nice walk in the park with Sahm, and maybe find some boba beforehand to sip upon. The world has lots of beauty in it that I should continue to look for, even if I’m scared. And I should keep watching comedies, because trying to watch Mad Men alone at night is probably not contributing to my psyche. And I will continue to do things that make me feel as happy and productive as possible, like learning Spanish, and learning how to cook better and healthier foods.

There are lots more topics to be covered in this blog, but for the moment, I’ll leave it here. Hopeful that I’ve found a more permanent calm for the day and can keep the gloom away.

OH! EXCEPT! I’m instituting a new code that I’d appreciate people helping me with. It’s called Code Yellow. If I’m in a particularly sad place, I’d love to be able to text Code Yellow to some of you, or post it on Facebook, and have happy/funny/adorable/geeky/uplifting/interesting articles/videos/pictures/memes/etc sent my way. Would you guys be ok with that?