Jan 22, 2001
I'm going through mood swings; I wrote what's below on a downturn.. Don't read on if you mind self-indulgent morbidity.
TIME BECOMES A LOOP
My threshold for pain was crossed over and over during my stay at the hospital until finally I lost all self-consciousness. I felt erased, white pain coursing through my stomach and body, a hole-filled sponge for nurses and doctors to stick needles into, plunging into areas filled with nerves, bone, blood and semen. Violated and deprived of food and sleep for almost two weeks, I fell into a rapid breathing trance.
When I was released from the hospital to be treated as an outpatient, I thought my troubles would diminish, which they have, but other problems have surfaced and the immense amount of time I have now to think about my situation has caused me some duress. (Why must I be so introspective?) And yet I enjoy thinking and am teased by the thought of thinking when I cannot due to fever or chemo-induced confusion.
After my hair actually fell out, I fully realized that I could actually die. If this is the case I wish it would happen sooner rather than later as I'd like people (including myself) to remember me as I was before December. If I die this struggle will be invalidated and irrelevant.
As an outpatient, I spend my days feeling weak, lethargic, dizzy and often confused. It isn't as bad now as it was right after I had my first chemo, but I get chemo every three weeks. So just as I'm regaining my personality, I'm knocked down again by the staggering amount of very powerful chemical goo they push into my body. There is so much of it that the veins plump up in my arms. After a few hours, I feel great, almost like a high, but the next day I am overwhelmed by an omni-present nausea and lack of energy. My next chemo is Thursday 1/25 at 2:30pm. You may all send me good vibes and listen to Bedrock's 'Beautiful Strange' at that time, in my honor.
Chemotherapy is designed to destroy
cancer cells, which it does, but it also destroys healthy cells. Chemotherapy
is thought to work because the healthy cells usually recover faster than
the cancer cells.
The Burkitt's Lymphoma cancer cell breaks down
very easily under chemo but without chemo, Burkitt's is one of the fastest
growing cancer malignancies; Burkitt's cells double in size every sixteen
hours.
Chemo attacks me at a cellular level. Just as one cannot resist the effects of acid once taken, I cannot resist chemo as its pull is all-powerful. It cannot be fought.
I've read everything I can about my condition on the web. There are some websites written by Burkitts' survivors that ring true to my ears. On his page, 26yo Ambrose said of his ordeal, "I was drained. I spent many days lying on the sofa, I had no strength even to go to the front door. I became completely dependent..." which is a horrifying state unless you're a baby.
He continued "..I no longer had the inclination to worry about bills or shopping.... I didn't have the concentration required to look after it.... Treatment induced mood swings... sickness, pain, loss of hair, loss of feeling and my taste buds weren't what they used to be."
I am not accustomed to lying around in bed or the couch all day being able to do virtually nothing. Nor I am accustomed to requiring help to do simple things like go to the post office or prepare food, and I'm not eating enough as it is. I am full of contradictions; I want to eat but cannot; I want help but cannot ask for it; I want to exercise but can't get out of bed; I want people to call but I don't want to answer my phone; I want visitors but am embarrassed by my lack of entertainment value, a problem I have never had.
Chemo destroys my mind, and often I wonder if I am any longer myself.
But now back to this essay's beginning; death.
According to the Vanderbilt Medical Center and St. Louis University , the current 3 year relapse-free survival rate for Burkitt's patients is approximately 80%. According to the National Cancer Institute , Burkitt's patients have a 90% survival rate if the tumor has not spread beyond the abdomen. According to another patient's website , if any cancer cells exist in the spine, there is only a 20% chance of living.
My multiple tumors did not spread beyond the abdomen, however, they have found lymph cells in my spine, requiring me to get chemotherapy directly injected into my spine. These lymph cells are not cancerous, but they aren't supposed to be there and so they do this as a precaution in case any cancerous cells are making their way up my spine and into my head.
If I develop a brain tumor, I will require a plug to be installed into my skull, allowing doctors to inject chemo directly into my brain at will.
Additionally, doctors have not yet done a bone marrow test on me. If they find cancer there, I will have Stage IV cancer, the worst it can get. But without the test, I am Stage III.
I was asked of my sexuality many times in the hospital. After affirming that I was (in their words) 'a homosexual', I was inevitably asked if I were HIV+, especially after I was diagnosed. I didn't believe I was and tested negative, but my doctor believes I still might be and so I am to be tested again in a few months. This is because Burkitt's Lymphoma is 1000 times more likely if you're HIV+. According to St. Louis University , the survival rate for Burkitt's patients who also have HIV is a median average of 6 months.
But as it is now, my survival rate is probably between 80-90%, which means my death rate is 10-20%. I suppose that's good except that a 1 in 5 or 1 in 10 chance of dying isn't that re-assuring. Especially since the struggle is so long and difficult. And there are still tests to be done and questions unanswered.
When I visit the Burkitt's Lymphoma Memorials page I see how many people have died who were younger and presumably stronger (physically) than I am. 20yo Jason Lee Combs' family thought "everything was going well until the cancer 'exploded' in July.." and killed him. July was only his 6th month with the disease.
As written by a family friend, a 13yo patient named Andrew "...felt that he was going to die, and he talked readily to his Mom about death, and convinced her he was ready. The night before, he stayed awake talking mostly to his Dad, then fell asleep about 4:00 a.m. About three hours later, he awakened vomiting pure blood, his breathing was loud and heavy, and his folks detected the 'death rattle'..." His sister described it as "fast and peaceful.."
Each story is morbid and engaging.
Some people had it much, much worse than me in the beginning; at least I am not still in the hospital. Others had it as I do or better. Some of all these people have lived. Some have not.
After my first chemo, my tumors broke down so quickly that I had 'tumor lysis syndrome', which means that my blood was full of broken-down tumors and their toxins, causing me to be extra-nauseous, weak and delirious. It also endangered my kidneys as I found myself peeing almost twice hourly, a very annoying thing when you're in bed with an intravenous cart attached to your arm. I asked to go home and the doctor said it would be impossible; intravenously they were giving me the equivalent of 30 gallons of Gatorade a day and so I was in the hospital for another week.
My doctor was pleased at how rapidly the tumors broke down, but taken aback by how sick the chemo made me. It killed enough of my white blood cells that I became dangerously susceptible to infections and caught strep throat, whose antidote cured me but left me with high fevers, and more nausea & weakness.
The next chemo will have less of a dose.
One of the side effects of having been chemically sucked of my energy, drive and ambition is that I am physically incapable of working. Being sick doesn't remove my needs to buy food and pay the rent, needs I won't be able to fulfill for much longer. I'm hemorrhaging money to this disease. I feel incapable of working but if I don't work soon, I will have no food, lose my precious apt, and my health insurance will run out in late July.
This web of worry tangles into the chemical assault on my brain and I find it hard to make plans, remember, relax or think.
When I was 20 I worked for a 30yo film director whose costume designer died of cancer. I remember clearly him saying how "weird it was when you turned 30, because your friends started dying..."
Like most people of my generation, I never thought I would make it to 30. Instead I envisioned for myself a violent death before then. This could be the time as my 30th comes on November 5th 2001.
But luckily I don't believe in psychic visions; I will let science do its work.
Am I Being Too Negative?
I don't know if I am. I am just trying to be realistic (for once?). After my spinal tap, my primary care physician said there would be no need for a spinal injection of chemo; I felt intense relief; two weeks later my oncologist reversed that decision. I no longer fully trust good news.
But my thoughts seem to be taboo in cancer-culture.
Much of the 'cancer experience' is full of over-positivity; people you hardly know sending you cards with 'Things will be great!' messages (and yet I must admit that I love, love, love getting cards); friends and strangers often ask 'How's it going?' while not really wanting to hear the details of my languorous days (or do they? And then I think how redundant I must be, how boring).
In the hospital the 'bright side' was always presented to me. My doctor's 'This won't hurt, that won't hurt' mantra was a lie (almost everything hurt, some things more than I could have ever imagined, even after morphine), so when she finally admits that something will hurt, I expect agony.
Around people I am expected to 'look on the bright side'. And so I have few to talk to about the negative aspects of this thing. And even those few I can talk to would probably rather I not, because its depressing, and because its important that I have a positive attitude. No one particularly likes to think about death, including me (or do I?)..
I imagine that behind my back my friends allow themselves to worry openly, but I am shielded from it.
I look, feel and think differently, and I wonder who I am becoming. This person's traits are not familiar to me. Is this due to the cancer, the chemicals and the toxins in my body? I am poisoned daily.
Will I ever completely cease being the beautiful, strange person I was?
---
But now, onto happier thoughts, namely music.
First this week, my favorite drum & bass song, and to my knowledge, the only corny drum & bass song ever written. From 1995 and in its entirety:
'Greater Love' by Elisabeth Troy
Next, a true classic from 1992. Along with KLF's 'Chill Out', the Orb's 'U.F. Orb' invented ambient trance and paved the way for the genre exploding like it did in the 90's.
Combining the Orb's legacy with the breakbeats of drum & bass, we finish with a dreamy song from 1997, one of my favorites. I dedicate it to three of my best friends, my caretakers TB, CB, and CPE:
I may have our house top ten of 2000 ready next week.
until then, remember..
when you dance, we are a part of what you feel.
Real Audio is required to hear
anything.
If you'd like to read more of my cancer updates: