Just had my first round of Cyclofosfomide and Topotecan-- my last hope defense against the Ewing's Sarcoma that I've been fighting for the past seven years. My hope is that this yearlong regimen will give me another remission, perhaps a year or two, and in that time a promising clinical trial will finally come to fruition. For now it seems like a pipe dream, but it's my only hope at extended life. If this chemo doesn't work, it will be palliative radiation and surgery as tumors arise, until they become too numerous and dangerous, and then I will be considering hospice, and my own death.
But for now, I'm back to the middle, back to purgatory. The brain radiation worked-- my scans look promising. I have no active tumors in my body, but it is obvious Ewing's is floating around waiting to take hold again. I will come to Sloan for my daily communion and pray it extends my life.
First day of Cyclo/topo was mild & I didn't need nausea meds. The hardest part is psychological-- back to the infusion suite, the familiar chairs and IV pumps and sugary apple juice. Every fixture the same, yet everything has changed. Most of the nurses I used to know have gone in the last few years (except my favorite, Louise, aka Weezy, who is still here twice a week to take care of me like old times). The most poignant difference is the loss of all of the friends I've met and loved here. My mind goes back to the last chemo year and our little group of young unfortunates, how we'd congregate in the dark, back recliner area and pass the time talking about popular culture, gossiping with the nurses, and complaining about cell counts. They were a light in the middle of those dark days, and they are not here anymore. And not for the reasons I'd like. I'd like to say they've been cured and have moved on with their lives. But that hasn't been the case with anyone I know. Ewing's either kills you, or you survive a little longer until it tries to kill you again. The closer you get to the end of the book, the easier it is to predict the ending (or will there be a twist?).
Most of all I miss M. I haven't been able to talk about her since her death and the way it was handled with her parents. In the last few months she developed animosity towards me because I was in remission while she was dying (at least, this is what I was told by friends). Whatever it was, she never told me, just cut me out of her life. I tried to understand her thought process-- I understand the anger of having your life cut short for no reason, and I understand the frustration of having nowhere to put that anger, no one to blame. It was painful, but I was happy to be the scapegoat if that helped her cope. And then her parents banned me from attending her funeral-- the memorial of my best friend, roommate, ewing's sister. That I could not understand or forgive, I can't even express the pain I felt during that time. I wrote an elegy that I never published. It just never felt right-- as if I didn't have permission to mourn this person who had such an impact on my life. To this day I don't speak with her parents and I have no idea what caused that animosity in those last days. I'm just left with unbelievable pain. And that pain is front and center now that I'm back at Sloan, getting chemo like we used to together, as sisters.
I'm here hooked up to the IV getting premeds as I write this. The idea of chemo for another year doesn't make me cry. Writing about the pain that came with a best friend's death and the rejection I felt from her family-- that makes me cry. I'm not even sure why I am finally sharing this. I've carried it with me for the past year, maybe this will release some of that pain. Maybe I will publish that elegy soon.
I promise I'll write something more upbeat soon. New projects and new developments.
If you look back through my archives, you'll notice I used to joke about everything.
7 years later and I'm a little burned out.
Thank you for all of the well-wishes in the comment section, I wish there was a way for me to respond to comments individually. Rest assured I read them all and appreciate every one. Your love & support have gotten me through, the least I can do is keep writing. Follow me on instagram @kaylinandres if you can, I tend to update there more than here!
Tuesday, November 17, 2015
Thursday, September 24, 2015
Dynamite or Curtains
It has been over a year since I've updated this blog. I've never been a particularly gregarious person, generally I am quiet and keep to myself. I started this blog in 2008 because I couldn't find a single YAC voice out there in the internet ether that matched my own. No one was sharing their story openly, honestly, in a way that might help fellow young cancer warriors prepare for their own fight. I created what I needed to exist at that time. Now there are thousands of YAC blogs, twitters, tumblrs and instagrammers candidly sharing their respective journeys. I felt my voice was no longer needed. Plus, I was in remission after four cancers and desperately trying to rebuild a normal life, yet again. In the interim I worked freelance art production with some amazing artists, and planned a new series of photographs and sculpture centered around themes of healing and renewal. After two years of remission I was finally allowing myself to consider healing, to consider the future.
And then the headaches started.
The first one, early this summer around my 30th birthday, I assumed to be a migraine. Though I'd never experienced a migraine in my life, I knew from friends that they often came with light sensitivity and could be intense enough to leave one bed-bound. This headache did just that. But it resolved by the next day, and when I had another one a few weeks later, I popped some Exedrin and thought nothing of it.
... Until they got worse.
The day-long headaches turned into weekend migraine marathons that kept me in bed in a pitch-black room. The pain was so severe it caused me nausea and vomiting. And then, just as suddenly as it came on, it was gone again. After a few months of these gut-wrenching brain-aches progressively getting worse, I gave in and went to the ER for a CT scan and MRI. Doctors soon told me I had a mass on my pituitary gland that was pressing on my optic nerve. The neurologist reassured me that pituitary adenomas are benign and extremely common, especially in women. He confidently proclaimed that my migraines were a separate issue and had nothing to due with the mass. Now, if you know my history, you know how many times I have been misdiagnosed (like the time Bellevue doctors told me my giant lung tumor was a hernia), so of course I knew he was full of shit immediately. Problem is, you're still at the mercy of your doctors, so I had to wait three weeks before being re-scanned. By that time the headaches had become constant and I can honestly say it was the most intense pain I have ever experienced. So, I was relieved when the neurologist frantically called me after my scan, telling me to come to the ER immediately.
Turns out the mass had grown, which means cancer. They wouldn't know the type of cancer until after the surgery-- they thought it would likely be ovarian or thyroid (both of which I have had, and have hormones controlled by the pituitary). The dark horse in this race was good 'ol Ewing's Sarcoma-- though they had never heard of it setting up shop in the pituitary, it was possible. Just very, very unlikely.
For the surgery they went up my nose and drilled a hole in the back of my sinus cavity. They removed 75% of my tumor, while the remaining 25% was left in-tact because it surrounded my delicate optic nerves. The neurologist said I was very, very close to losing my eyesight permanently. It's amazing how lucky I've been in these strange, small ways throughout the years, amidst so much misfortune.
Surgery was terrible and painful, but I healed without complication and started immediately on 6 weeks of radiation, of which I have only two days left. Brain radiation has left me incredibly tired, nauseous, weak, and forgetful. My hair is falling out, but not noticeably to anyone else, thank god.
So... is it a boy? Is it a girl? No, it's Ewing's!
Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left? All questions swirling in my head, all questions I might never have an answer to, until life unfolds.
One of my favorite books is a little known novel by Jack London called The Star Rover. I discovered it two years ago, right as I was beginning my last remission. It has nothing to do with the outdoors or adventure, at least not in the physical sense. It's about a man in solitary confinement who is forced to endure torture in a straight-jacket for months at a time, weakened and sensory-deprived. He learns to project himself outside of his body and through time to past lives that he recounts in vivid vignettes. With this meditation he escapes the jacket and is able to survive, mentally and physically, torture that would normally kill a man. I related to this novel on such a deep level, because his description of solitary and torture in the jacket is so, so much like going through intense chemo and illness. The man in the book is being tortured because the warden suspects he has hidden dynamite somewhere (he hasn't, of course, he is our enlightened protagonist and remains truthful). The Warden doesn't believe him and tries to kill him several times, all unsuccessfully. Throughout the book the Warden says the phrase, "Dynamite or Curtains", and he echoes back, "Dynamite or Curtains". I think of this saying often and have adopted it as a battle cry: I can either accept the extraordinary, the spark of life, the fire, or I can accept death. I will always choose the former.
And then the headaches started.
The first one, early this summer around my 30th birthday, I assumed to be a migraine. Though I'd never experienced a migraine in my life, I knew from friends that they often came with light sensitivity and could be intense enough to leave one bed-bound. This headache did just that. But it resolved by the next day, and when I had another one a few weeks later, I popped some Exedrin and thought nothing of it.
... Until they got worse.
The day-long headaches turned into weekend migraine marathons that kept me in bed in a pitch-black room. The pain was so severe it caused me nausea and vomiting. And then, just as suddenly as it came on, it was gone again. After a few months of these gut-wrenching brain-aches progressively getting worse, I gave in and went to the ER for a CT scan and MRI. Doctors soon told me I had a mass on my pituitary gland that was pressing on my optic nerve. The neurologist reassured me that pituitary adenomas are benign and extremely common, especially in women. He confidently proclaimed that my migraines were a separate issue and had nothing to due with the mass. Now, if you know my history, you know how many times I have been misdiagnosed (like the time Bellevue doctors told me my giant lung tumor was a hernia), so of course I knew he was full of shit immediately. Problem is, you're still at the mercy of your doctors, so I had to wait three weeks before being re-scanned. By that time the headaches had become constant and I can honestly say it was the most intense pain I have ever experienced. So, I was relieved when the neurologist frantically called me after my scan, telling me to come to the ER immediately.
Turns out the mass had grown, which means cancer. They wouldn't know the type of cancer until after the surgery-- they thought it would likely be ovarian or thyroid (both of which I have had, and have hormones controlled by the pituitary). The dark horse in this race was good 'ol Ewing's Sarcoma-- though they had never heard of it setting up shop in the pituitary, it was possible. Just very, very unlikely.
For the surgery they went up my nose and drilled a hole in the back of my sinus cavity. They removed 75% of my tumor, while the remaining 25% was left in-tact because it surrounded my delicate optic nerves. The neurologist said I was very, very close to losing my eyesight permanently. It's amazing how lucky I've been in these strange, small ways throughout the years, amidst so much misfortune.
Surgery was terrible and painful, but I healed without complication and started immediately on 6 weeks of radiation, of which I have only two days left. Brain radiation has left me incredibly tired, nauseous, weak, and forgetful. My hair is falling out, but not noticeably to anyone else, thank god.
So... is it a boy? Is it a girl? No, it's Ewing's!
Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left? All questions swirling in my head, all questions I might never have an answer to, until life unfolds.
One of my favorite books is a little known novel by Jack London called The Star Rover. I discovered it two years ago, right as I was beginning my last remission. It has nothing to do with the outdoors or adventure, at least not in the physical sense. It's about a man in solitary confinement who is forced to endure torture in a straight-jacket for months at a time, weakened and sensory-deprived. He learns to project himself outside of his body and through time to past lives that he recounts in vivid vignettes. With this meditation he escapes the jacket and is able to survive, mentally and physically, torture that would normally kill a man. I related to this novel on such a deep level, because his description of solitary and torture in the jacket is so, so much like going through intense chemo and illness. The man in the book is being tortured because the warden suspects he has hidden dynamite somewhere (he hasn't, of course, he is our enlightened protagonist and remains truthful). The Warden doesn't believe him and tries to kill him several times, all unsuccessfully. Throughout the book the Warden says the phrase, "Dynamite or Curtains", and he echoes back, "Dynamite or Curtains". I think of this saying often and have adopted it as a battle cry: I can either accept the extraordinary, the spark of life, the fire, or I can accept death. I will always choose the former.
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