When I started writing this blog, it was because I was dealing with chronic migraines, I needed an outlet. A way to feel like I was in control of them vs. them controlling me.
But today, right this minute, I am not writing about migraines. I am writing about leukemia. Because I am scared and sad and heartbroken. And because all of my life, whenever I feel anything, the only real thing I know to do (other than pray) is to write.
I was diagnosed with leukemia in February 2007 and I have been in remission since 2008. There are multiple types of leukemia. And, you see, the day that the oncologist told me that I had it, he told me over the telephone.
The story is just too long to tell right now. Briefly, before that phone call, I had been hospitalized and he had put me on a chemotherapy protocol.
About a week after my discharge from the hospital, mom and I saw him in his office, he took me off the chemo and told me that I did not have leukemia; he wished me well and said to get on with life, goodbye. Later that afternoon, mom and I were shopping in Buckhead. I was so skinny and tired, but hey! I did not have cancer. I was wearing one of those black velour Juicy Couture 2 piece sets that are so comfortable. They are not the best thing ever, but they are cute enough to be worn in public without someone accusing you of wearing pajamas (and when you are really sick, being out is a big deal, so the outfit stops mattering all that much). I can’t explain the sensation other than to say it feels a little bit like your nose is running, but it is warm and you just know…you know because you have spent a year (or at least, at that time, I had spent the previous year) bleeding like a faucet from my nose.
Mom looked at me and rushed me to the restroom. For those of you who are not familiar with Atlanta, Buckhead is nice. And people are not gross in Buckhead, and they certainly don’t hang their heads over a public sink and bleed for 20 minutes (unless “she must be on drugs”). My sweet mother says that she knew at that point that, yes, something was really wrong.
A few days later, the phone rang. It was the oncologist. I was standing beside the window in my bedroom and my mother was standing under the door frame watching me talk to him. He told me that there had been a mistake; that a couple of tests had come back and I did have leukemia. I was shaking so hard it looked like I was having a seizure. I was outside of myself scared, unable to stop the shaking; unable to control tears, words, anything. I suspect that most people who have ever been diagnosed with cancer can describe THE moment to you. The oncologist quickly followed his diagnostic statement with “if you were going to choose cancer, you chose lucky” because the type of leukemia I got responds well to treatment (to this day, I intend to write a book and title it “The Lucky Cancer”—classic). He is a very good oncologist and I cannot imagine how hard it must be to tell people of any age that they have cancer but there are some phrases that are just too ironic.
So, I was diagnosed with chronic mylogenous leukemia (CML). Most people do not get that specific type until they are over 60. I got it when I was 34 (one of my college sorority sisters got it that very same year, guess we blew those odds). Another trademark of CML: it comes on slowly; sometimes people do not even know that they have it until their yearly physical reveals a crazy blood cell count.
Well, that is not how it happened with me. I got very sick the year before I was diagnosed.
It was slow, yes, but it slowly ripped my body and life apart, and it was painful, exhausting, lonely and frightening.
I was living in a tiny town in South Carolina. I Thank God for the 3 people who really loved me. They saved my life, their family members also did by extension. But those 3 people saw me through some very scary moments and honestly kept me alive.
All cancers are scary; and each has different reasons. Being a cancer of the blood, leukemia involves a lot of blood and bleeding and bruising and really scary, horror film scenes.
When I first started getting sick in 2006, I started getting nose bleeds. Which was odd because I had never been a nose bleed person. In fact, as a child, my little sister would get them so I was jealous (because as children, that is what siblings do, when not playing with one another we competed for mom and dad’s attention). So (please remember I was ~ 7 years old) I would literally hit my nose to try and make it bleed like her nose “could” (again, please remember I was a little child–apparently a competitive one).
Little did I know that life would fly past quickly and a few decades down the road, my wish would come true (more than I wanted it to).
So, until leukemia, I had never been a nose bleed person.
The other thing that was happening was that my thigh and hip bones were aching horribly. Nothing would make them stop hurting. I was working as a speech pathologist for an outpatient rehab clinic and I can remember asking my colleagues if their legs also ached (thinking maybe the floor we stood on was problematic). They would laugh and say “welcome to your 30’s”. I was 33 and I silently thought “wow, the 30’s are HARD”…..what none of us knew was that my bones were hurting so badly because that is where bone marrow is made, and my bone marrow was procreating at an abnormally fast pace, which was forcing my bones to spread apart–and yes, it hurts, badly.
The other thing that was happening (are you noticing a trend?) I started getting upper respiratory infections that would not end. For a year I mixed those airborne effervescent tablets with water and drank the cocktail daily; like it was just something normal that everyone was supposed to drink daily. I was doing it because I kept getting sick and in the past, those airborne effervescent tablets had shortened my colds. However, 2006 was different. The airborne wasn’t working, I was still getting sick. And when I would end up at the doctor’s office, they would attribute any change in blood counts to a respiratory infection.
The other thing that was happening was that I. Could. Not. Stay. Awake.
That is the thing with a blood cancer, you need blood to have energy; when your counts are off—you cannot imagine utterly exhausted you become.
The doctors diagnosed me with mono and started giving me weekly B-12 shots.
Looking back, of course something was very wrong with me, but at the time, even the doctors could not see it.
I remember one night very well. It was about 2 weeks after Thanksgiving. My parents had come up to visit for the holiday.
I have no idea which night of the week it was, or why it stands out, because by that point I was so sick that every memory is a blur…
No, that is not true, I know why I remember that night. I remember it because it was the first time I verbalized my absolute certainty that something was wrong and I saw the same concern reflected back despite words that argued against mine. One of my 3 lifesavers was at my house. We had gone through another one of my horror film nose bleeds and then cleaned up my face and the bathroom. We went to sit on my couch in front of my fireplace. I lived in an historic home in a tiny town and there was a fire place in every room. We were in the front sitting room. The bricks on the fire place were painted white, it was pretty. I liked my house. But I was so tired, I felt like it had to be at least 1:00 AM and I certainly could not talk or watch TV. However, in real time, it was probably ~ 8:30.
That is when my friend looked at me with eyes that revealed concern. I said “something is wrong with me, like really wrong with me” to which my friend replied “no, you just need some rest”. And that is when I said it “no, you don’t understand. i am so tired, i feel like i need someone else to breathe for me. i don’t feel like i have the energy to keep breathing”. I must have closed my eyes. I do know that my friend helped me get to my bed and then sat in the rocking chair across the room all night, for no other reason, but to make sure I kept breathing throughout the night.
A few weeks later, every material “thing” that was part of me, that I had earned, collected, bought, won, cherished over my single adult years was boxed in storage and I was living (mostly sleeping) at my parent’s house. About 6 weeks later I was admitted into one of Atlanta’s big hospitals unable to stand up, unable to walk. I was throwing up. It seemed like blood was everywhere.
So, today. I had already had 3 nose bleeds by noon.
I started having them about 5-6 weeks ago and they have been bad. If you have ever watched a horror movie and they show a scene with a pale creepy gross ghostly thing bleeding profusely…that’s what I mean by “they have been bad”. They are absolutely terrifying. And my dear husband stands by my side for 15-30 minutes, handing me paper towels (because toilet paper does not absorb this stuff). He holds my hair and says comforting things. And then he cleans my face, my hands, the sink and towels. Somehow, despite all of the complete grossness of it, of me these days, he tells me he loves me and that I am going to be fine; that everything is going to be OK.
Well, at some point this afternoon my dear husband ran out to pick up steaks and firewood so that we could grill out and decorate our Christmas tree this evening. While he was gone, I proceeded to have a 30 minute horror film nose/mouth bleed that literally filled the sink and left me lying on the floor in a pool of blood….
when he got home, that is how he found me…
One way or another, I will be fine. But you tell me if you would not feel afraid, sad, overwhelmed, angry, reminiscent right now? And, at the very same time of year?
Even if this is the “lucky cancer” and even if I a fortunate because I have had a really good life overall. Today. Right now. I feel sorry for myself. I will feel better soon. Writing does that for me. If you read this, please pray that the doctors will figure out what to do, and please pray for my husband. He is a good man. He is taking such good care of me.
Cue…another nose bleed (these things are time consuming)………………..