My father built floor to ceiling cupboards along the walls when he closed in the garage of my childhood home. The top shelf of these storage units was four feet from the ceiling, just enough space for a fourth grader to comfortably nest. I would climb to that top shelf with a blanket, a pillow, a flashlight, a jar of marshmallow fluff, and a book. Everything a ten year old girl needs for happiness.
And I was happy when I was holed away in my little nest. It was my space. My quiet time. My place where I could be wholly myself with no roles to play. And as the only girl in a family with four boys, it was a safe place for me to be girly.
But mostly it was about the books.
I loved to read. I went through several books a week, often reading an entire chapter book in one sitting. I loved the Little House on the Prairie series, Little Women, Little Men, and the rest of the Louisa May Alcott books, Kidnapped, Heidi, The Swiss Family Robinson.
I loved to read. Past tense.
Somewhere along the way I lost the joy of reading. Maybe all those years of mutlitasking caught up with me, because now when I sit down to read, I can’t just read. I have to be doing something else at the same time. If I try to read without some other distraction, my mind will find one anyway.
Maybe the the ability to enjoy a book has been educated out of me. Oh, I can plow through a book in record time if it’s for school. But the intensity of reading for data, studying for exams, and culling information for papers has left me impatient with florid writing styles that take their time in revealing information. Give me the facts, preferably in a bulleted format.
I suppose I could also blame this on chemo brain, which is a very real condition that makes it much more difficult for those who have endured chemotherapy to retain and quickly process information. But in truth, this situation began a long time before I knew I had cancer.
The frustration in all of this is the fact that the love of reading is tied up in my self image. I think of myself as someone who loves to read. I present myself to the world as someone who loves to read. The amount of money I spend on library fines and book stores would suggest that I’m the kind of person who loves to read.
What I love, it turns out, is the potential of a good book. Oh, and the cover. I love to judge a book by it’s cover. There’s nothing like finding a great cover paired with a well written blurb on the back to get my fingertips tingling. Oh, this is going to be good.
And it is, usually. For the first 20 minutes. If I make it that far. But odds are my toddler will climb to the top of the bookshelf, or I’ll realize it’s 6pm and I haven’t figured out what’s for dinner yet, or I’ll notice the polish on my toes is chipped, and this is just taking too long anyways.
What I really want to read is:
I was sad and my life was a mess
I got my hands on an unrealistic amount of money
I went to Italy and ate a lot of food
I went to India and met a very wise redneck from Texas
I went to Indonesia and fell in love
bulletpoints.
See, was that so hard?
But I hate that. The snob in me is cringing at what I just wrote. The snob in me wants to analyze Eat, Pray, Love, to argue about it and disect it and, and, and, … but that means I have to come up with the attention span I had in fourth grade – an attention span long enough to actually finish a book.
I love books. I love the idea of books. I want to love reading books. I miss loving reading books. I want to love reading books again.
Has anyone else lost and refound their book mojo? How did you do it?
I hurt today. It’s frustrating to be back on the pain meds after doing so well for so long.
This is part of the battle, part of the getting up every day and getting on with life despite the stumbling blocks you find on your way.
These are the little things to which I cling:
The sun on my aching legs.
My daughter running over and giving me kisses at random moments throughout the day.
When my hands lose the strength to open the jar of baby food, I know she’ll be ok with just a bowl of cheerios and raisins. Daddy can feed her the vegetables later.
Chocolate gelato
Ginger ale
Chocolate gelato with ginger ale – don’t raise your eyebrow at me, it’s an amazing combination
My husband is going to give me a massage tonight – right Babe?
My daughter has figured out that letters and words are symbols that represent sound and meaning
Giggles – there is nothing quite so medicinal as baby giggles
Maybe it’s just the oxycodone talking, but I’m really feeling blessed.
Of course they are that beautiful azure blue, but that is just the color.
She speaks with her eyes. I’ve seen her express love, joy, fear, sadness. Her eyes flirt, play coy, she laughs with her eyes. Her eyes are curious, studious, they narrow when she’s questioning, widen when she’s accepting. She is learning so much about communication right now, new words every day, but she already says so much with those amazing blue eyes.
Ever wondered what a day of chemotherapy was like for a cancer patient? I thought I’d bring you along today, and give you a snapshot of what cancer treatment looks like. I hope its helpful to the newly diagnosed. Obvious disclaimer: of course, every patient’s treatment is different, and each cancer treatment center is different.
6:00 AM
Alarm goes off. I’m supposed to get up and take my pills. I’m on a new type of chemo that requires me to take a pill 12 hours, 6 hours, and 1 hour before the chemo infusion starts (the first pill was taken care of last night). I hit the snooze button.
Again.
And again.
And again.
7:00 AM
Actually get out of bed and take the pill. Oops. Time to get the baby and myself ready to go.
7:45 AM
Mom shows up to take us in for treatment. She even packed me a lunch for my long day. Thanks Mom.
8:15 AM
I arrive at the Seattle Cancer Care Alliance. Mom takes the baby with her for the day. Check in for Port Access. (Instead of having an IV put in every time I go in, I have a port that is installed under the skin near my left collarbone. I know a lot of people hate having the port, but I love it. It’s so much nicer than the IVs and for some reason, getting an IV going on me is really difficult.) After the port access is installed I go around for the rest of the day with these tubes dangling from my chest.
Break into moms lunch while I’m waiting.
9:30 AM
Blood draw for MUGA scan (Multi Gated Acquisition Scan). They take my blood, make it radioactive, and later they will return it to me, then they can track the blood as it makes its way through my heart to determine it’s efficiency. Several of the agents in my chemo are known to cause some heart damage to a small percentage of patients. This scan is scheduled periodically to determine how well my heart is handling the chemo, and whether we need to make any adjustments. This isn’t part of my normal chemo routine.
waiting . . .
waiting . . .
waiting . . .
10:05 AM
The machine that does the MUGA scan is a long narrow bed (generous term) with an arm holding a 2″x2″ tablet that looks something like a small film holder for an x-ray machine. When I lay down, the radiologist attached leads and wires to my abdomen and chest, then another tech came in and they both verified that the blood they are giving back to me, now radioactive, actually belongs to me. The the treated blood goes back in through the port. Then she covered me up with a warmed blanket, they have blanket warmers all over the place here and they are really good about making sure you don’t catch a chill. After covering me up, she help up a wide vinyl loop to stick my arms through so I could relax them and wouldn’t have to hold them in the air at my side throughout the test. Seriously, when I say a long narrow bed, I mean maybe a foot and a half wide, not enough room to rest your arms at your side. The radiologist positions the tablet just above, but not touching, my chest. Then it’s a matter of just laying still for a long time, repositioning the tablet to get another angle, repeat… you get the picture. No pain, just boring laying there and trying not to move – plus I had a bit of a cough, and it was really frustrating trying not to cough.
10:50
Stop by the pharmacy to pick up a prescription – to be honest, it’s a refill of the pills I’m supposed to take 1 hour before chemo because I forgot them at home. I’m really on a roll today. I’m blaming it on chemo brain.
11:00 AM
Take the pills and meet with my Oncologist’s nurse, Martha. I usually meet with either the nurse or the doctor before each infusion. We discuss my symptoms and any questions I might have. I confess I took my pill late this morning, she said it’s no problem at all, I just needed to get the pill in the general time frame. She also said that my blood counts are awesome (yay me!), and my heart is operating well within normal parameters. That’s what I like to hear.
11:30 AM
Check in for my chemo infusion. They give me a pager like the kind you get at restaurants while you’re waiting for a table.
11:50 AM
Pager goes off and I head back to my chemo room (Bay 39 this time) and get settled in. I follow my nurse around, so the bay I’m in depends on the section she’s working in. Joy is so awesome I’d happily sit on a speed bump in the parking lot if that’s what it took to have her do my infusions. Joy orders my meds and then we compare notes on our babies while we wait for the meds to show up (ok, not the whole time, she did check on her other patients).
12:30 PM
Start Herceptin infusion through the port.
Today’s lineup:
12:45 PM
The husband finally arrives. Yay! He tries to be here with me for most of this stuff, but he had a critical class this morning, and I really prefer that he not miss his classes.
2:20 PM
Benadryl and Zantac, pill form. Zofran pushed into the line in the port by hand. These are premeds to help prevent nausea and help prevent an allergic reaction. Now we are getting ready start the real chemo: Taxol. Another nurse came in to verify that the meds and the patient both match the Doctor’s orders. They don’t do this for every single medication, just the really big guns. The nurse also puts on a plastic apron, with full length sleeves and wrist cuffs, before handling these really harsh meds.
2:50 PM
Sent The Husband to procure treats from the Infusion Unit kitchen: specifically mac’n’cheese, and chocolate ice cream. Please no lectures on health food, it’s chemo day.
nearly 3:00 PM
The Husband returned with the ice cream and tortellini with pesto, they were out of the mac’n’cheese. Totally appropriate substitution.
play around online for several hours . . .
6:45 PM
Zoladex: this is a little pellet that is inserted into my abdomen with a needle. The lidocaine shot they give me before hand hurts more than this shot. Then the port is removed and I get a little bandage, and we head out of the building where mom and the baby have arrived to give us a ride home.
Symptoms: The first evening of chemo I usually feel great. The meds they have been giving me to combat nausea are awesome, almost no nausea at all. The biggest side effect for me has been fatigue. It’s just really hard to stay awake sometimes, or to get off the couch at any time. It sounds counter-intuitive, but exercise does help with fatigue. Generally the symptoms accumulate through the course of the week. Tuesday is more foggy than Monday: Thursday and Friday I’m much more exhausted than Wednesday. It’s interesting that there is such a long (several days) delay between getting the chemo and when the symptoms hit their peak. I’m curious to see how my symptoms will change with the Taxol. Many people I’ve met say the Taxol was easier for them to tolerate than the AC I was on before, although there were a few that had a more difficult time. I’ll report back next week with an update.
And for those of you who have been anxious to see a picture of my bald head:
If you have any questions about cancer, treatment, symptoms, side effects, or how I’m dealing with it all, please feel free to ask in the comments. I’m happy to answer questions.
And if there is anyone out there who has just been diagnosed with cancer, I hope this post will be helpful for you. Hang in there. Bear in mind that every treatment plan is different, and everyone experiences and tolerates their treatment different. I found that most of the worst case scenarios my imagination conjured up were much worse than the reality when I finally faced it. I hope the same is true for you. Best Wishes.
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