I have begun this blog in order to share my experience as I travel this strange new path my life has brought me to. I was researching Hodgkin's Lymphoma online when I stumbled upon a survivor's blog. I read the whole thing and it inspired me to start one of my own.
It has been less than a week since I have even known that I have a tumor. I am a young, otherwise generally healthy female, supposedly at the peak of my life. I graduated with a BA in philosophy/religion in April of 2008, two days after turning twenty-four (on the twenty-fourth). I have been a performing musician/singer/songwriter since I was fourteen.
This past weekend began as an exciting adventure and turned into a surreal, nightmarish sort of dream. I flew from Florida to Arizona in order to meet the creator and to be present at the premiere of the film "Human Like You," which features twelve of my original songs.
Fortunately, I was able to be present at the premiere of "Human Like You." Unfortunately, the symptoms I had before noticed in passing became too pressing for me to ignore the very same night. Before leaving for Arizona, I had had a couple of experiences of waking up to pain in the left side of my chest, near my heart. I massaged the area, said a prayer, and fell back to sleep. On Saturday night, January 31-February 1, 2009, I woke up around four o' clock with the pain worse than I'd felt before. I wrote in my journal and asked myself what was going on. Was something wrong with my heart?....my breast? Why did I continue to sweat buckets at night, soaking through my clothing and dampening the sheets? I had hoped the dry Arizona air would cause the nightly sweats to cease. I honestly thought I sweat at night because of my alcohol consumption. Or that I was sweating out karma or something strange like that. I had no idea that sweating was a symptom of certain types of cancers.
In any case, the next morning I spoke with my mom on the phone and told her what was going on. At first we thought we would wait until I returned to Florida on Wednesday to see a doctor, but then as a few tears of concern made their way from my eyes and I told her I didn't want to die suddenly because we brushed off something important, she encouraged me to ask the people I was with to take me to an Arizona clinic that accepted our insurance. It was ironic that I had a line from one of Natalie Merchant's songs ("My Skin") stuck in my head that morning: "fine binding tendrils that strangle the heart."
I asked the folks I was staying with if they could take me to a clinic and they agreed. When we arrived there and I realized the tests were going to take several hours I told them they should just go and I would give them a call when I was ready to leave. So the first tests were performed. A blood sample, an EKG. Then I sat in a little room partitioned off from another woman with a chest cold and waited for my CAT scan. Soon a man arrived and walked me over to the room where my chest was x-rayed. He asked me if it had been a long time since I had had this procedure. It had been. The last time I could recall was when I was a kid in Rochester, NY, over fifteen years ago.
Once I had returned to the small room, a woman doctor soon came in with a serious expression on her face. She began her sentence, "I don't want to freak you out but, the chest x-ray is not what we would normally expect to see in a young, healthy, twenty-four year old girl. It looks like you have an especially large heart." She left and I joked around about it a bit, "Of course I have a large heart!" The next test which would give us more detailed information was to be a CAT scan. I was set up with an IV and a nice man named Jack rolled me into the CAT scan machine. Red dye was flushed into my veins as I held my arms above my head.
In about an hour or less the woman doctor returned and brought her serious expression with her. She was very kind, actually. She told me, "Well, the good news is that there is nothing wrong with your heart. Your heart is fine. ... BUT there is a large tumor near your left lung. It is taking up nearly three-fourths of the lung space." I said "holy shit" slowly and tears began to run down my face. I asked her how big it was. She said "it's really big." Soon she left and I called my mom to tell her the news. While I was on the phone with her a girl came into check me out of the clinic. They were sending me home with the recommendation that I get on the plane back to Florida as soon as possible and get to a local doctor. This girl said way too much and it was out of her field. She was an RN, not a doctor. She said, "I heard you are a singer. I'm so sorry." She started crying. As she was saying these things a man down the hall was making awful noises- he sounded very sick, and was very loud about it. I felt like I really was in a nightmarish kind of dream. By this time the people I was staying with had arrived. I said, "This is a real mindfuck. I've heard enough. Let's get out of here."
To make what could be a very long story short, let's speed this up a bit. I was able to catch a flight out that very evening. It left Arizona around one in the morning and had me back in Florida by eight thirty Monday morning. The waiting and the plane ride was very lonely. I was left alone to process this information. Ironically, in the book I was half reading, "Skinny Legs and All" by Tom Robbins, it was Superbowl Sunday, which had just been celebrated that day. I was a little anxious that something would happen to me on the plane. What if I had a heart attack? etc., etc. But I made it home safely and my dad drove me straight to my primary physician, where my mom met us.
Every day since has consisted of a trip to the Mayo clinic up in Jacksonville, Florida. I have undergone numerous blood tests, a spiromoter (?) test (ugh! too much intense breathing required for my taste!), a CT scan of my abdomen, and a CT guided biopsy. I have seen a pulmonologist, a neurologist, and a gyneocologist. The good news is that so far there has been no other masses spotted anywhere else in my body. The "bad" news is that the tumor is malignant: it is Hodgkin's Lymphoma. The reason I place "bad" within quotation marks is because it could've been a more deadly kind of cancer. The doctors have stressed that Hodgkin's Lymphoma is potentially completely curable, and I could go on to live a reasonably normal life after this, especially since I am young. We have not yet been told what stage of HL I have. There are more tests to be done and more diagnoses to be made.
I am going to use this blog to record this experience. It is really crazy that this is happening, but I am trying to keep my head on straight. I have a feeling that my soul had some idea of what it was getting itself into when it agreed to do this human thing. I am a courageous spirit and I came here with a purpose. Right now, I am being handed this challenge, being thrown this curve ball. I am going to give it my best effort. I am going to apply myself to this challenge as I would any other. Thank God I am not alone. This life is a great big dream. I have been shown this and I know this. And I can't say that I have not been given some warning that a day like this was coming. I have had some very strange experiences and premonitions. I believe that the Divine has been preparing me for this, as well as my family. So here we are. Let's do this thing.
"Then it is a fact, Simmias, that true philosophers make dying their profession, and that to them of all men death is least alarming" (Phaedo 67E).
