the chemo brain is strong

I rolled my eyes when I read about chemo-brain. I couldn’t begin to fathom what it could possibly mean. “Impaired memory.” I’d experienced my fair share of mommy-brain moments, but nothing could prepare me for forgetting some one’s name the instant they introduced themselves. So, for your reading pleasure: a list of things I – a 27 year old woman – struggle with after chemo.

1. Recipes. There is a certain finesse to following a recipe. A quick read through should give you the gist, so that you can then start at the beginning and have a good idea of what’s going to happen. Not me. Not any more, at least. Long gone are the days that I can read a recipe online and recreate it in my kitchen at a later date. In fact, the only way to make sure I’m going to not screw up a recipe is to re-write it, by hand. I guess it saves on printer ink.

2. I was never fantastic with names, but pretty good. I could remember the names of people I’d met, or characters from a show I enjoyed. Now? Forget it. If I don’t write that person’s name down it’s going to be gone in about five seconds. I usually abate this problem by asking them to add me on face book, but it has lead to some fairly embarrassing face-to-face challenges. There’s nothing more frustrating than knowing some one, and not being able to remember their name.

3. Productivity. I’ll be honest. I wasn’t incredibly productive before my cancer diagnosis. Mostly because I was tired all the time. So I guess there has been some overall improvement in this department, but I am so easily side tracked. I lose half of my day when I start doing the dishes and realize I can’t find the sixth part of the damn onion chopper so I decide to organize a draw which leads to emptying the entire pantry onto the kitchen table which leads to ordering pizza for dinner. #doesntmattergotpizza

4. Time. I find it difficult to measure the passing of time. Never mind that I am still almost constantly tired (especially if I stay up late… like I’m doing now…), but my day just disappears. Most of my friends know that I keep a timer on my phone. It goes off every day at two o’clock. Mostly so that I know that it’s two o’clock. That means I should eat now if I haven’t eaten yet. That means B-man will be home from work in a few hours. It means I should take my medicines if I haven’t. It means my day is slipping away. It means my daughter is running around singing a song about two o’clock because my husband did it once.

5. I’m a rude friend, or a lousy acquaintance. Picture this: the magazine photo of a fun motherhood. Coffee with a friend across the kitchen table while the kiddlets play in another room. And yet, I can’t enjoy it as much as I would like to because the second I want to respond I have three choices. First, the rudest option, interrupt and say what’s on my mind. Second, stop paying attention to what my friend is saying and repeat my thought to myself over and over again and hope that it stays relevant to when I get a chance to say it. Or third, forget my thought and come across as uninterested. With close friends they have been fairly patient on my toddler-level conversation skills. With every one else I just nod and smile.

6. I have to write everything down. And by “write down” I mean literally, with a pen, on paper. This is actually my cure-all. From grocery lists to daily tasks: if it’s written down, there is an incredibly improved chance that I will remember it. Thank goodness. The hard part here is that I then end up keeping a ton of lists, and an actual paper planner (I’ve actually had people ask me “what’s that” in regards to my planner. Bite me people. It’s not THAT crazy!).

7. There’s probably a million other things, but that’s the joy of chemo brain. Ignorance is bliss and I’ve completely forgotten. And that’s okay. This is where I am, and nothing changes over night.

 

It’s not glamorous, most people don’t understand that some one my age could actually struggle with most of this, and people always say “but it’ll get better, right?” The answer? Supposedly. It can take 4-5 years, and not every one regains complete function. Until that point I will be forcing myself to do things I don’t feel confident in doing (like writing!), and keeping a mountain-sized-pile of lists.

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Chapter 13: last one done

I relished in all of the compliments I received for my early posts about dealing with cancer and the stories I shared. Unfortunately my drive for creative writing has gone the way of my energy: absent, but certain to return.

 

As distractions from my myriad of symptoms I spent those first months laying in bed replaying childhood memories, focusing on the little details to include that would make it more real, more appealing. But now I don’t lay in bed and ponder. My brain is too stressed out for idol thought so I lay in bed and wait for my medicine to start working. It carries me off into a dreamless sleep where my legs feel heavy but my anxiety disappears. I hate it, but relish in it at the same time. Brains are incredible things… and mine is struggling to keep it together lately. Facing mortality does funny things to one’s brain. But I digress.

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I had my last chemo 7 days ago.

The first three days afterwards were spent sleeping. I honestly don’t remember them, family, friends and my sweet husband took over playing mom while I drifted in and out of wakefulness.

The next two days still involved heavy napping, with the added misery of nausea, leg cramps, and intense intestinal pain.

My finger tips are numb and will likely take a year to repair the nerve damage.

My hair is growing in… and still falling out. I’d guess that in about four weeks it will stop falling out. So that’s nice.

My blood levels are all messed up, and my pulse has been between 120-140 for the last few weeks. Normal is between 60-100 beats/minute. It makes me feel like I’ve run a marathon after just walking around the kitchen.

I’m anemic. It’s exhausting.

The bone pain has returned, but some how knowing that when it leaves it will be gone forever makes it easier to handle.

Some foods taste funny to me now. I thought that since I didn’t have this in the beginning it just wouldn’t be one of my issues. Wrong… it just waited until the last cycle.

Steroids makes me hungry. Eating hurts. It’s a vicious cycle. Thankfully, after a week, the pain upon food consumption has subsided.

My electrolytes are off, which has resulted in very painful, intense cramps in my legs – particularly at night. I’m using a supplement to help with the off-balance, but to be honest this was the last straw that made me realize drug-induced relaxation  was for me.  After weeks of waking up every few hours with a charlie horse it was time, and it helps with the anxiety, the cramps, the nausea and the stomach pain…. and the not sleeping. That’s five birds with one tiiiiiny little stone.

 

I’m feeling hopeless. It’s weird, as every one gets really excited and humans have this universal “happy dance” that seems to happen every time I see some one now. “Last chemo! All done! Yay!!!”. And I hate to be a downer, but honestly… I’m not done. I’m done taking the medicine. Now I have to recover from the disease, and from the medicine, and from 5 months of not doing anything.

 

I can’t open tough jars any more, I wager with my bladder to hold on just a bit so I don’t have to walk up the stairs again. I can’t pick up my daughter. I’ve got a bunch of mental conditioning to do to get over my new and intense visceral reaction to the idea of going to the doctor, having blood drawn, or the sweet nurses who helped me through this. Just the thought of a needle makes me want to hurl. Weird… because I’m not afraid of needles. Just sick of them.

 

I also know this isn’t over. I still have to face it for the rest of my life, in particular the next two years when I get scans to check and see if it’s come back. And when it hasn’t come back I have to worry that every little ache or pain is cancer.

It’s terrifying. I can’t think too far out or the “ifs” become overwhelming.

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So… I know I’m just a bucket of joy. lol.

 

Today was the first day that the relief of being down with chemo hit me. I stood on the landing and the relief washed over me. Each step and each second is a little bit closer to finding normal.

 

I’m trying to be happy. I’m trying to move on. It’s just a lot harder than people seem to realize, and I feel like a whiner for not being oh-so-super-excited like every one else is for me.

 

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