Well, it happened today. Until today I'd been handling all of this particularly well. People will often ask "How are you?" Many of them mean it, many don't really care, and honestly many don't know what else there is to say. I'm not sure I would know what else to say. But honestly, very honestly, I've been doing quite well. I totally understand what's going on. I get that I need to start chemo soon, and I get that it won't be swell. I get that after the chemo, I'm at a major risk for infection and need to live in a box. I get that the major suckiness will probably come after chemo, when my blood is all sorts of messed up.
I get that I have acute myeloid/myelomonocytic leukemia. I have cancer, and that's what I can deal with.
It's everything else that builds and builds. And because I am putting so much energy and effort into dealing with the cancer, I tend to have a much shorter fuse with everything else.
It's like taking the SATs. You study and study, you build up your knowledge and your confidence. You aren't scared, you aren't angry, you aren't stressed. You're ready. But every day, your friends ask you to go out each night. At first the extra noise is fine, but slowly it builds and builds and builds until you snap. On the outside it looks like you're stressing about the test, but in reality the test is the only thing you're sure about.
A lot happened today.
0200 Wake up for vitals and antibiotics.
0530 Wake up for blood cultures, vitals, and a change of sheets due to night sweats.
0800 No breakfast, because I might get surgery today.
0900 Downstairs for an echocardiogram of my heart. It's basically an ultrasound.
1000 Bone marrow biopsy
Many things with no sense of time: More vital checks. More antibiotics.
It looks like my surgery is tomorrow. Ok, I can eat now. 45 Minute wait. Usually not a problem, but I haven't eaten. It comes in and I eat.
My HCT is 23. Anything under 24 and I need someone else's blood. Never realized how emotional it is to recieve blood. Somewhere, someone who doesn't know me donated a pint of their blood. Donated. Getting nothing in return. If I don't get it, I could die. If millions of people didn't get it, they could die. Someone prevented me from dying today, and I don't even know them. I get a little choked up. If I hadn't known I had leukemia, I would be somewhere else right now, and I should be getting blood. I wish I could thank whoever's blood is now helping me live.
The blood was in the fridge. It's ice cold in my arm. It almost burns. No, it's so cold it does indeed burn. My arm really hurts, so I loop the hose in such a fasion under my blankets to warm it up before it gets to me. I now have one arm.
I need to use the bathroom. This is already a process when hooked up to a rack giving me saline and antibiotics. Now it's giving me blood, but if I dont keep the hose warm, it really hurts. I try to use the bathroom but, alas, I cant do it correctly. Grr.
My mom passes me a pair of boxers and I put on my sweatpants. I finish up, limp back to my bed (two biopsies in the right leg, remember), and crawl back in. A bit out of breath. I'm anemic.
Nurse walks in and my family gives me some space. "You need to call the sperm bank today." The chemo could make me infertile. Though I have no interest in having children right now, that could very well change in the future. I call the bank. They charge $1000 per specimen. "Does insurance cover this?" They tell me to call my insurance company. All one-armed. Trying to keep the hose warm. I call the broker, I need to have a doctor call. I get my doctor to call. I call work to see how things might go at the end of all of this. Things are looking up. I'm talking to my boss, but the doctor walks in and needs to call the insurance company directly. Time is running out as the sun is falling fast. The number is on the back of my card. The card is in my wallet. The wallet is in my black fleece. My fleece is... wait.. where is my fleece? It should be in that drawer, the doctor can't find it. I can get it later. She needs it now. I hang up on my boss, he understands. I call my sister. "Where is my fleece?" It's in the drawer, tucked away. I get up, the hose gets loose. Dammit that hurts, my arm is engulfed in an icy flame. Kym wants to know if she can come back in. Not yet. Then why'd I call? "I gotta go it's fine!" I get the wallet. I get the card. The doctor leaves. I limp back to bed, I cover the hose, my arm starts to feel ok... slowly.
Okay, I think it's okay for the family to come back in. They come back in. They're talking. I just want some me time. They've offered to leave at the drop of a hat, I just need to say the word. I'm about to when....
Vitals! Thermometer in my mouth... I'll ask them afterwards. What are they talking about? I don't care. There's the doctor. Okay, I'd like them to leave. There's a thermometer in my mouth. I wave my arm. I can't wave both or my arm will hurt. Kym doesn't notice. Man I really wish they'd leave.
"The insurance won't cover it"
Thermometer out. Hands out. Hose loose.
Fuck, my arm!
"WILL YOU JUST LEAVE??!!"
"What? Oh, okay! Sorry!"
They're gone... it's too much today. I just need some time to myself.
The tears come shortly thereafter. I didn't want to yell at my sister. The tears last a good while, but the doctor is very comforting. I don't mind the cost, I just wish I knew I had to cover it before all of that.
I start chemo soon. Probably tomorrow. I can deal with that. The cancer is fast growing, I'm not scared. I'll be in the hospital for months. I'm not worried. I can't work for months, I'm not stressed.
But shit. There is so much more to cancer than that.
It's weird. I have a very positive outlook on the cancer. I'll deal with the pain and I'll deal with the vomit and I'll deal with the hairloss and I'll deal with the nightsweats and I'll deal with the blood drawings and I'll deal with the bone marrow extractions and I'll deal with a thousand other complications because I have no other choice. I have to deal with them, and I'm confident I will.
It's the choices that make it difficult. Trial or no trial? Bank or no bank? Do I want people here or do I want my own time? Do I want to walk around or do I want to write? Do I want chicken or tofu? Soup or salad? Both? Milkshake? Do I want them to pick me up something from outside?
I don't know! I really don't. I need orders. I need to be told I have no options. I need to have a plan, and I need to know what that is. I can fight this, but I need to know how I'm going to do it.
I met Onk tonight, and she explained the plan. It was the first sense of calm I felt all day. I just want to fight the cancer.
Chemo starts tomorrow afternoon.
Let's do this.