I have a fever this morning. I had one last evening too, and the day and night before that, and before that. These low grade temperatures have been going for about five days now. They are unnerving.
These fevers are NOT the postpone-the-transplant-she-needs-antibiotics variety. I am taking prophylactic (“just in case”) antibiotics and anti-virals. These are the oh-f***-her-cancer-is-back variety.
The fever is accompanied by muscle aches and fatigue in the evening that will send me to bed by 6 pm to make the feeling stop. Tylenol and motrin have no effect. Narcotics are useless for the pain.
It’s making me want to kick and scream and cry if anything else goes out of order in my life. It’s pushing me towards the psychological breaking point. I can’t believe I’m not there all ready.
I have a lot of four letter peppered ranting sentences I would like to say about this. I’m going to keep those phrases in my head. I don’t want to shock any of you who have never heard my trucker mouth. You can use your imagination.
“Maybe it’s not what she thinks it is,” you may be thinking.
Maybe it isn’t.Maybe it's a virus, but I'm on anti-virals. Maybe it's my head playing tricks on me, giving me psychosomatic fevers. That would certainly be nice, but it was a re-occurrence in August 2006 that made me feel this way and then again in July 2007. My symptoms are not text book, but neither am I. I haven’t had this feeling yet this year. I guess I was past due.
So let’s play a game and try to figure out where the tumor may be this time. We’ll call it “pin the cancer on Hillary” like pin-the-tail-on-the-donkey. I’m guessing a pleural infiltrate on the left since that’s where my pain seems to hurt the most.
I had a feeling my life may go like this. If you’re not interested in science and epidemiology, feel free to phase out right now, because I have a theory. I’ve had it since I was thirteen and my immune system had been misbehaving for years, doing terrible things like giving me pneumonia and bronchitis every year around Christmas. I missed birthday parties and the circus because I was sick. I had mono and was flat on my ass for 2 months!
I decided my bone marrow was defunct. This is why:
I had a difficult delivery. Heather was delivered first, and after that, I was not moving. I had apparently settled in. I did not engage. I was not headed down the birth canal, and the chord was wrapped around my neck.
When I did engage, the chord got tighter. My heart beat was lost.
From the stories I have heard, all hell broke loose. I couldn’t be delivered. Mom needed a caesarean. She needed to get to an OR. We’ll say this process took 10 minutes.
Ten minutes is too long to go without a heartbeat. A c/s was out of the question. I was delivered high forceps, meaning a doctor took some tongs, reached through the canal, and removed me as quickly as possible by the head. My skull was fractured. My facial nerve was damaged. These were not my biggest problems at the time.
I was dead. Dead as in no heart beat; Dead as in blue and not breathing. My apgar score at birth was 0; I improved to a 1 at ten minutes. A one on the apgar scale signifies a slow heartbeat and irregular respirations, a facial grimace and blue extremities.
I receive two phone calls every birthday, one from my mother at 9:50 am, the time of my delivery, and one from the doctor and lifelong friend around 10:30, the time I was revived. I acquired more than two parents at birth. Doc you rock.
I was intubated. I had seizures. My face was half paralyzed.
If you don’t believe this check my records. Ask my mother, doctor, or any nurse who was present. They all seem to remember. A conservative estimate for my period without vital signs is twenty minutes. Permanent tissue death from anoxia starts at 5 minutes. Medically I am not supposed to have the level of mental functioning I do. Apparently, I’m a miracle. At three months old to the day, the hematoma on my head disappeared and I could move both eyes.
How does this contribute to my blood cancer. My theory goes that at the point of delivery, when your chest is released and expands, when you take your first breath, the oxygen acts as a catalyst within your body. The oxygen combines with your blood and circulates throughout beginning the process of cell maturation, such as the process of fetal hemoglobin growing to mature levels. I believe the bone marrow follows a similar unknown process. I believe my process was thrawted in a period when it began to differentiate but could not fully complete the process because of the trauma leaving me with undiiferentiated cells that could never fully differentiate. This is what causes tumors associated with cancer, incomplete cells with nowhere to go. Specifically, I believed I was missing a component in my B-cells that could contribute to leukemia in my twenties. Hodgkin’s lymphoma was not on my radar, but it fits the profile.
Because of my theory, I have had a lifelong fear of cancer, specifically blood cancers. Bone marrow transplants ranked right up there on the fear factor with serial killers. I stayed out of the sun. I didn’t smoke. I ate healthy, locally grown foods. I exercised. I refused to be a hematology/oncology nurse, because I did not want to mess with therapies that could cause blood disorders.
This idea has littered my life. One time, at the China Club, a young doctor tried to pick me up. He was doing a rotation in the same hospital in the Bronx I was. He was mixing chemotherapies on the 6th floor. He said I should visit.
I asked him what he had done wrong in med school to get that assignment, because clearly, whoever had sent him to Our Lady of Mercy to mix chemo was trying to kill him through mugging or blood cancer. Needless to say, I didn’t call or go to visit. He wasn’t my type anyway. It takes a special type of man to handle what I say.
Also due to this theory, I felt like I was living on borrowed time. There is an upside that I have lived my life how I have wanted. I’ve made mistakes, but I’ve faced them. I have no regrets. I don’t feel I’ve ever hurt anybody knowingly. I’ve tried to be a good person despite my weaknesses. People do not scare me, no matter whom you are or where you are from. I want to know about you. I feel safe striking up conversations. There are exceptions to the rule, but only on an individual level from my intuition regarding who the person is.
I thought I’d be prepared when the inevitable happened, but I still freaked out when I felt the first tumor. I’ve lived trying to be good with God, but I am weak. I’m flawed and human. I just hope I am in the best position I can be in.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."