LOOKING BACK - LOOKING FORWARD
June 13, 2013
6 years. It's been six years since I was told my body was trying to kill me. 6 years since I tasted the poison that saved my life and stole a bit of my innocence. 6 years since I saw my husband's fists ball up and knuckles turn white as he said the words, "honey, you have cancer". 6 years. It's a long time. A very long time. And yet, "objects in the rearview mirror" and all that.
Like any "thing you go through" you don't really understand it until you walk the path. You assume. You suppose. You empathize. But you dont know. Not really. And i can say that. I can own it because having watched my father endure chemo I guess I figured I knew.
I didn't know.
There was a time, post treatment, post celebration, post-it-all, when I thought I would never be okay. When I touched my lymph nodes ritualistically. When I googled "blood cancer recurrence" daily. There was a time when I wondered if the collateral damage was too great. When I believed surviving cancer was easier than surviving surviving. And that time wasn't that long ago.
The following is parts of an email I sent to a friend while my treatment was going on. I post it here, now, not because it is uplifting - it isn't. It's horrid. And painful to read. I post it not because it glorifies surviving because it doesn't. It scrubs naked the awareness ribbons and celebrations. I post it now because of the wonderful simple beautiful fact that I forgot.
I forgot how bad. How hard. How ugly and fetid. And you, you who are going through it...who have gone...who are at the start...who are at the finish...who are cheering...who are angry...who are broken and empty and broken, you need to hear this.
Do you hear this? I forgot.
And That. Is. Beautiful.
And evidence of the awful grace of God.
These treatments are getting more difficult. I take much longer to even begin to recover.
What’s it like? It’s awful. it’s awful on so many different levels. Right now one of the most troubling things is my breathing. It is more and more labored and painful with each treatment. To compensate, I find I’m taking little shallow breaths which apparently isn’t good and can lead to pneumonia. I try to take deep full breaths but it hurts so much … like when you breathe in really, really cold air – sort of like that. Every now and then I spontaneously gasp and my chest spasms. I’m wondering if I’m holding my breath … I don’t know. The doctor has given me an inhaler but I don’t really think it works. I wondered if maybe it has nothing to do with my lungs and maybe it is like a reflux inflammation thing. I’m taking boatloads of prilosec to try to fix that. It’s just hard because it is every breath. Every breath is painful.
And I have so little wind! I can’t climb stairs without resting immediately after. I can’t walk too far without sitting down. Even up and down the stairs to the basement I have to sit for a minute. I feel like I used to after a really hard workout. But all the time. It’s nuts. I’m so weak.
The nausea is getting worse with each treatment. In the beginning, I had none. Now I struggle keeping food down. Thanksgiving is coming and I have treatment the day before. That should be interesting. I’m probably the only girl in America that is going to lose weight over Thanksgiving.
The fatigue is unexplainable. Now it lasts so long that I don’t even get a boost of energy before my counts start to drop and I feel it again. I thought I’d been tired before in my life but man oh man, this fatigue … the only thing I can think it is like is when depressed people say they “can’t even get out of bed” … that’s how I feel. Sometimes I lay there for hours trying to convince myself that I don’t have to go to the bathroom because I cannot summon the energy to get up.
I can’t sleep. That started a handful of treatments ago – possibly a side effect of the chemo-induced menopause. I don’t know but I sleep HORRIBLY … even worse than I used to. I take ambien to help and it does … sort of. I fall asleep but I don’t stay asleep. I usually wake up around midnight and am up for a good long while. My sleep is fitful and I spend half the night throwing the covers off and half of it pulling them back on. Hot cold hot cold hot HOT! cold. Frustrating.
I think what’s most frustrating is that each treatment really has been different. This time, for example, I really didn’t get the sore mouth I have almost every other time. But my bones ache and I feel brittle. It’s just hard to plan when you don’t know if you’re going to get kicked in the crotch or punched in the tits. Figuratively, I mean.
Everything about me is ugly. My skin color, my toenails, I think I’m losing my fingernails too now, my nose runs all the time, my hair keeps falling out, I have no muscles left in my whole body .. no tone and definition, my teeth look horrible and I smell bad. Well, I think I smell bad. People have told me they can’t smell me but I think I smell like chemo. I can smell it on me. I look ugly, I feel ugly, I smell ugly. I have a constant HORRIBLE taste in my mouth and there is nothing that can be done about it. I try everything but you can only eat so many mints or cinnamon tic tacs before your tummy puts an end to that. My doc suggested eating with plastic utensils and maybe that will help so I’m trying that but it makes me feel so ....disposable. Water tastes like chemo. I have to put the juice of at least half a lemon in each glass just to choke it down. I have a hard time swallowing and I don’t know why. Also I have terrible gas – I belch and belch and they aren’t the cool, loud kind either … they hurt SO BAD …
I actually miss my periods. At least if I had them I would still feel female in some way. I don't feel female anymore. I don't feel like a person. I feel like a thing. I'm a thing.
At the same time of all this awfulness, I really am grateful for it. I feel like I’m being prepared for something, like I’m being refined. You know when gold is refined they put a big hot something under it and all the impurities float to the top where they are scraped away. Maybe that’s what’s happening to me … maybe all the junk is being boiled up and soon someone or something will come along and scrap it all away.
Or not. Maybe it just is what it is. Maybe there is nothing to learn.
Jenne can be reached at Jenne@jenneink.com or by clicking on the contact button.