A Treatise on Exhaustion

I thought, after my diagnosis, that I’d be able to get caught up on things while working from home because chemo was going to kill my immunity. I was looking forward to doing the training and getting the certification(s) I’d not been able to get done while on travel all last year. I’d also be able to finally get some of the multitude of home projects that have been in various stages of completion  conquered so I could spend more time doing things I enjoy rather than things I had to do. I remember thinking this would all work to my advantage.

I had mono in the Spring of my senior year in high school. I spent my last quarter of school going back and forth between being able to be at school for my 1st period class at 7:30 and not getting there until almost lunchtime. I remember tired. I remember exhausted. I distinctly remember the relapse I had while working on a CCC crew later that summer after being woken up in the middle of the night by one of my crewmates thinking there was a bear outside our tent. It turned out to be skunks and raccoons fighting over our breakfast food that someone hadn’t put away.

In the months before my cancer diagnosis, I found myself coming home from work trips really tired. Mono tired. Unless I had to fly out again on Sunday, I’d sleep most of my Saturday away. I’d get up for a few hours, read or do something else that required no real energy, nap for a few hours and get up again. I’d go to bed at my “regular” time and sleep another 10 or so hours. I was chalking this exhaustion up to stress, traveling and maybe thinking that jet lag had a cumulative effect. That was cancer trying to kick my ass.

The first 2 weeks of chemo weren’t that much different than the weeks before. I was able to do the things I needed to do. I needed a nap almost every day, but assumed that some of that tiredness was due to the stress of everything plus not knowing what the chemo infusion would be like, as well as the excitement of having my sister and her kids here for Thanksgiving. In hindsight, it was both cancer and chemo trying to kick my ass.

The 2nd infusion succeeded in kicking my ass. Roundly. That treatment, and all that went with it, rendered me completely useless. I couldn’t read a book without having to go back and re-read sentences or paragraphs over and over. I couldn’t watch training videos without having to rewind them endlessly. After a couple of days of trying, I abandoned both completely. It was so bad that even Facebook couldn’t keep my attention. I was also afraid. Afraid to walk to the mailbox because it was icy and had snowed. I didn’t want to fall outside. Afraid if I used a knife, or more likely, dropped one, I’d cut myself. Afraid to cook for fear of burning myself. I instead laid on the couch for hours. Bored.

I realized, between the 2nd and 3rd infusions, that I felt like I was under anesthesia those 5 or so days my chemo, and that it was Compazine making me feel that way. By the 4th infusion, my days of low energy and tiredness were limited to the 3rd and 4th days after the infusion. The rest, I felt almost normal. Even on Taxol, I felt more or less normal until I hit the halfway point of treatments.  Napping wasn’t enough. After I got home from my infusion appointment, the tired hit me like a truckload of quicksand. I napped for four hours. I slept 14 more hours that night. That whole weekend I felt like I was back to where I started. One of the women in my support group reminded me that chemo’s effects are cumulative. Ohhh. Shit. Yes. I’d forgotten that.

I’m on Day 3 after the 3rd to last infusion. I woke up sorta tired with a headache today. I’m pretty sure it’s the chemo and not that I’ve overdone it this weekend. Even though I did overdo it just a tad. That said, even though I’m tired today, I’m not plowing through the quicksand or having mono tired like I was 3 weeks ago.

I look forward to a day when I’m not tired and sluggish all the time. When I can vacuum my rugs or make up my bed without needing  top stop for a break. When I can go out for a hike without feeling like I need to stop for a nap halfway through. I don’t know when that will be.

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Entertainment – Oscar Nominees

While I’m not a huge fan of TV, I can be something of a movie buff. And seeing as I’m on self-imposed home imprisonment, I have plenty of time to watch the Oscar nominees as they show up on streaming sites like Xfinity or Amazon.

Like good books, I like good movies. I especially like good movies based on good books. Those are usually far and few between because somebody decides to do something utterly stupid by oh, I dunno, changing major details or rewriting big chunks of the story. Like in oh, I dunno, Memoirs of a Geisha. Totally ruined it.

Anyway…  I try to watch at least the films that were nominated for Best Picture, and then I’ll also try to see Best Actor and Best Actress if they’re not already nominated for Best Picture. Yeah, I know there are a ton of other awards, but these are the three I care about most.

Competition is usually pretty good in these categories. Here’s what I’ve seen so far.


1. Dunkirk: This is the pretty close to true story of how the Brits evacuated the brunt of their army which got itself backed up to the beach by the German Army at Dunkirk in France toward the beginning of WWII. There were 4000 soldiers stranded there before the evacuation.

I liked how this film was done. I could have probably lived without Kenneth Branagh in this one. The role didn’t quite fit him. I am a fan of Hans Zimmer scores, so that helps. It gets 93% on Rotten Tomatoes.

2. Darkest Hour: Another very close to how the actual history went down as the film chronicles the installation of Winston Churchill to Prime Minister of Britain in 1940. One of his major successes was calling for civilian boats to rescue the British Army off the beaches of Dunkirk in France.

Gary Oldman delivers a stellar performance as Winston Churchill. Definitely worthy of the Oscar he won for Best Actor. Lily James of Downton Abbey fame also stars and delivers a great performance for her role as his secretary. It gets 86% on Rotten Tomatoes.

3. Lady Bird: This is a coming of age film that highlights the timeless turbulent relationship between many mothers and their teenage daughters.

I think this is maybe a more honest look at that relationship than some other relationships we’ve seen on TV and in movies before. It gets 99% on Rotten Tomatoes.

4. The Big Sick: Kumail Nunjiani gives us a peak at his real life courtship with his now wife, Emily Gordon.

I had a hard time with this movie. For the most part, it moved to slow and even though there’s a happy ending, I found it horribly depressing. How this manages 98% on Rotten Tomatoes is beyond me.

5. Roman J. Israel, Esq.: Denzel Washington plays a lawyer who lives behind the scenes at the office where he works. When his partner dies, he’s got to get out of his comfort zone and ends up doing something that goes completely against his grain.

Denzel does a great job with this character. While they didn’t come out and say it, this character seems to be on the Autism/Asperger’s spectrum. I kind of wish they’d have added that dimension to this story. The audience rating for this film is higher at 55% than the critics at Rotten Tomatoes.

6. Coco: I’m generally a Pixar fan regardless of what they’re putting out. I thought the Nov 22nd release date for this film was really stupid. It’s about Day of the Dead, so the fact that they didn’t get it out for Halloween kind of bugs me.

I really loved Coco. It’s a great story and really well done by Pixar. This movie made me think about how important my extended family is to me, and just how much I miss my grandparents and my great-grandma. It gets 97% on Rotten Tomatoes. Now that I’ve seen it, I was hoping the rating would be higher.

7. Get Out: A young African-American visits his white girlfriend’s parents for the weekend, where his simmering uneasiness about their reception of him eventually reaches a boiling point.

I’m not a horror movie fan, but this one was recommended by someone, so I watched it. I’m not sure horror is the right genre. The audience rating is about 10 points lower than the critics on Rotten Tomatoes at 87%. I think I’m with the audience. It was okay, but not 99% great.

It’s going to be a while before I get to the rest of the movies I want to see. When I get there, I’ll put another post together. In the meantime, I’ve got taxes to finish and a few other things before I get to my surgery date in a month.

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Staying Strong

Flower Arrangement

I received this very beautiful vase of flowers from my my office yesterday. What helps me stay strong is knowing that there are people everywhere (and I do mean everywhere) that are thinking of me, praying for me, and wishing me well. It doesn’t take sending me flowers to know this is true. It certainly doesn’t hurt. 😉

One of my neighbors asks every few days if they can do anything – can they pick something up from the store or run an errand for me. Some friends text and ask how I’m doing every week or so. Some other friends call. I have another good friend who, when she’s thinking of me, sends me something off of my Amazon Wish List. I, in turn, keep it updated with things that are affordable and that I’d buy for myself if I didn’t know she was watching my list.

Thank you to all who are sharing in my journey! I appreciate every call, text and prayer!

 

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What Happens When I Can’t?

Camellia

I’ve written lately a lot about things that have nothing to do with cancer. Mostly because cancer is a big enough burden on its own that it’s hard to carry it in the forefront every day. It’s not like I don’t know it’s there. The main reason for posting other stuff is because it’s good to get out of your own head once in a while. It’s also good to laugh and do things you enjoy so your body can relax and heal a bit.

Like most everyone else, I’ve had traumatic experiences in my life. Things like the loss of a friend or close family member, a serious accident, the end of a major relationship, a critical illness, or a major surgery. Some of us have witnessed or been victims of natural disasters like tornadoes, earthquakes or hurricanes. Nearly all of these things take a great deal of effort mentally, and sometimes also physically to sort out. It’s really important to take care of your body, mind and soul as you go through your healing process.

There are so many things about cancer that are, or can be, traumatic experiences, and I don’t think anyone is immune to the stress reactions that come along with being diagnosed with any kind of cancer. Starting with the diagnosis – you feel a lump that’s out of place; the mammogram, CT scan or MRI shows something abnormal; the biopsy – these are all things that are pretty scary as they’re happening. Learning about the treatment plan – whether you will have surgery, chemo or radiation, or a combination of them and in what order, along with how long the process will take – is daunting to think about. Just hearing the side effects of the drugs and the things the chemo team wants or doesn’t want me to do is enough to turn me back into the class clown.

Going through each phase of the process – surgery, chemo and radiation – is stressful. Which side effects will show up and when? How bad are they and what can I do to mitigate them? What happens when I can’t?

Indeed. What happens when I can’t? 

Listening to the nurse rattle off all the side effects of chemo and the things I am allowed (or not) to do while I’m on chemo brings out the class clown in me.

Nurse: “We don’t want you to participate in contact sports while you’re getting chemo.”
Me: “Dang!! I was all set to try out for the rugby team this week!!”

You’ve seen my anger, fear and anxiety in action already. The thought of fighting chemo brain for the next 10 years when most of the medical community pushing chemo refuses to recognize it or its seriousness as a side effect sends me reeling. I feel pretty much the same way about heart, liver and kidney damage as well as permanent neuropathy caused by chemo. Those 5 things are a lot before you even get back to the fact that it’s cancer you’re fighting. I still thank my lucky stars that I have breast cancer and not one of those cancers they have no idea how to treat yet. The fact that this is the most studied, most researched and best funded cancer isn’t lost on me, but it doesn’t take away the shock of the diagnosis and the fear of how long it will take to recover after this year of hell.

Laughter is great medicine! I saw something the other day on Facebook that led me down a rabbit trail that led me to another rabbit trail and I ended up on a few video clips of interviews with Robin Williams that started with one on Inside the Actors Studio. There was an Oprah interview with him and Nathan Lane when The Birdcage was released. And a wonderful skit with Carol Burnett. I found what is probably his last interview with David Letterman. I learned that Craig Ferguson has a similar sense of humor and is almost as quick as Robin Williams during his interview on the Late Late Show. I may have laughed as hard at this one as I did the Inside the Actors Studio clip.

Exercise is important and helps blow off steam as well as keeps my body strong while chemo is working hard to keep me down. Some types of exercise are better than others. Taking a bike ride is a good thing to do, but it’s harder for me to turn off my brain while I’m riding and it’s too dangerous to ride with earbuds stuck in my ears. I can sometimes think about a song to keep up my cadence, but more often than not, I’m having big conversations with myself. Doing that doesn’t always help. I’m not really able to go to a gym right now because I have no immune system. It’s a tough spot to be in.

Eating right and getting enough sleep are also things I have to make sure I stay on top of while I’m dealing with cancer stress. Sometimes I crave sugar now, and while I don’t have to give it up completely, I know I’m prone to eating poorly when I’m stressed. I also don’t sleep right when I haven’t attended to my feelings.

So… what else can I do? Remember that stuff that’s cluttering up my life? That stuff really comes in handy sometimes. I can escape into the books, movies and TV when I need a distraction. I can put some great rock & roll music on and sing with it at the top of my lungs. I can also put on something quieter and have a good soak in the tub to relax. The best mindful practices for me, though, are to journal and write (yes, like this blog), and to get the camera out and go take photos. Taking pictures lets me just clear my head of everything but what I’m doing, and my focus is more on seeing and experiencing whatever it is that I’m photographing than other stuff that’s been knocking around inside my head. Now that spring is right around the corner, I’m hoping to have enough energy to be able to get out a little more and do some shooting so I can get some more flower pics.

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Got Me a Case of Cabin Fever

Now that I’m finally feeling better after being sick since October with some sort of upper respiratory infection or another, I realized that I have the dreaded winter malady, cabin fever. My friends from the Upper Midwest know this condition well.

Cabin fever is what you get in Minnesota in January. The holidays are over, there aren’t really any holidays to look forward to until spring – unless you work for a bank or the government, anyway, and it’s bitterly cold, dark, grey and gloomy pretty much the whole month. While Minnesotans are hearty and can handle temps below zero with blowing snow, when it’s dark and dreary, no one wants to do much of anything so they stay inside and stare at each other. After a while, the same people and 4 walls start to get to you and all you want is to get out. And that is how the Winter Carnival was born. Well, sorta.

Here in Seattle, the temperatures have been pretty balmy for January. It’s been mostly in the upper 40s to the mid-50s. Back in Minnesota that would be reason for celebration. However, it’s Seattle, and for 3 weeks of the 4 in January, it’s rained. February wasn’t much better. That means it’s was dark, dreary, wet and gloomy for the 25 days in a row. Coming into March has been a little better, but still really wet.

For the past 3 months, I’ve not left the house other than to go to chemo, the dentist, and the grocery store. This is mostly self-imposed. Chemo kills the immune system, and if I get sick, it’s worse because I can’t fight it on my own. I’m so tired of being cooped up even if it is mostly self-imposed.. It’s pretty limiting.

Spring is right around the corner. While I have more energy on Taxol, I don’t have enough to go too far from home, so road trips are pretty much out for a while. Damned cancer.

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Entertainment – Reading

I’ve always liked to read. We belonged to the Scholastic Book Club and I got new books about once a month. I loved the books that won the Caldecott or Newbery Medals. There were all the books about Ramona Quimby, Where the Wild Things Are, The Story About Ping, The Five Chinese Brothers, Make Way for Ducklings, Blueberries for Sal, The Story of Ferdinand, Harry the Dirty Dog and Clifford the Big Red Dog. Or who could forget the adventures of Curious George and Madeline? As I got a little older, I graduated into Johnny Tremain, Are You There, God, It’s Me, Margaret, Henry Reed’s Babysitting Service, Charlotte’s Web, Charlie and the Chocolate Factory, A Wrinkle in Time, The Lion, the Witch and the Wardrobe, Mrs. Frisby and the Rats of NIMH, Where the Red Fern Grows, The Island of Blue Dolphins, My Side of the Mountain, The PearlLord of the Flies… Am I bringing back memories?

In junior high, I’d spend whole days in my room reading or re-reading books.

There was the stuff we read for class throughout high school – Oedipus Rex, Our TownA Raisin in the Sun, AntigoneFlowers for AlgernonHawaii, Macbeth, Everyman, Hamlet, The Odyssey, Romeo and Juliet, 1984, The Great Gatsby, The Taming of the Shrew, The Catcher in the Rye, Beowulf, Death of a Salesman, The Canterbury Tales, The Iliad, The Adventures of Tom Sawyer, and Les Miserables. I know there are more, but my memory is shit.

I don’t know how many times I read Jaws. I know I read The Bourne Identity at least twice. I managed to get all but about 20 pages from the end of The Stand. Same with Alaska. I loved The Drifters. Swallowed up Hermann Hesse. I read some of the same books my dad was reading at the time – The World According to Garp, The Hotel New Hampshire, The Stories of John Cheever, short stories by John Updike. I blew through the V.C. Andrews books my mom was reading, too. I remember reading The Name of the Rose, 2001: A Space Odyssey, 2010: Odyssey 2, Zen and the Art of Motorcycle Maintenance, The Valley of the Horses (I couldn’t finish it), Jonathan Livingston Seagull, Go Ask Alice, The Hitchhiker’s Guide to the Galaxy, Star Wars, Shogun, Helter Skelter, All Things Bright and Beautiful, Love Story, tons and tons of poetry and who knows what else.

College brought probably less pleasure reading and more required stuff. Textbook stuff mostly. There was a period during school that I wanted to understand more about serial killers and read books about all of them I could find. I learned things about human behavior that I’m still not sure I wanted to know existed. I picked up Salman Rushdie’s Satanic Verses, but still haven’t bothered to read it.

During and after college, I know I focused a lot on short stories. They were well written and didn’t take a lot of time to read. I had a subscription to Story Magazine and started collecting the annual anthologies. I’m still mad that I got rid of both of those. A coworker got me started on Outlander in the mid-90s. Those books brought out the binge reader in me. I remember more than once sitting in my bed unable to put those books down. John Sandford was another writer whose books started filling my shelves. I own all of his books. I read and enjoyed the entire Master and Commander series.

Over the years I’ve tackled a lot of the required reading from the old days as well as some newer novels along the way. I’ve read some good stuff and some bad stuff and some really weird stuff. I figured out somewhere along the way that I really like a good, well written story with relatable characters.

So what am I reading now? At last count, there were roughly 1100 books in my Kindle library, not counting those that were borrowed and returned to the library. My physical library probably has a few hundred in it, too. With all these books you’d think it would be easy to find something to read and get them out of the way. Ha!

In the last year or so, I’ve read a lot by Brene Brown. I’ve tried to read books before the movies, so both versions of Girl on the Train, The Time Traveler’s Wife, The Girl with a Dragon Tattoo series, the Game of Thrones books, Wonder… When I was traveling, I read a lot of short stories in between tech books for work. I’ve got The Best American Mystery Stories of 2017 sitting on my nightstand. I’ve read the first 2 stories in it. As much as I think I have time for books, I keep finding other things to do. I’ve been puttering reading for the last maybe 6 months.

The last book I read to the end was Sherman Alexie’s You Don’t Have to Say You Love Me: A Memoir. If you don’t know Alexie, he’s a Native poet, short story writer, novelist, and performer. I’ve been keeping some sort of journal most of my life. In high school, it was copying poems and other things that struck me as things I needed to remember in my life. So, a lot of Frost, Sara Teasdale, Emily Dickins, etc. These days it’s different. I haven’t done much creative writing since college. A poem here and there. Pieces of things for short stories. Mostly just live streaming the things that were going on in my life and processing through them. It was Alexie’s memoir to his mother that inspired me to write poetry again. I put maybe a half dozen poems in a notebook while I was in Denver in October. Then… I lost the notebook at the airport. I tried 9 ways from Sunday to get it back and was not successful. Not sure what karma was thinking there…  I can’t remember a single word I wrote in those poems. Unusual for me. Writing things down used to commit things to memory – it was how I got through high school and college. Maybe those were words that I just needed to let go to the wind.

One of these days I’ll put the ideas for my short stories together and actually come up with something readable.

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About the Filler

When I first started this blog, I thought about writing a post every day. I’m ever so glad and thankful that I chose not to go that route. Aside from feeling like I’d be behind the 8-ball every day chasing a clock to get a post out, it sounded tedious to me to have to come up with something every single day that was new. I also felt like a daily dose of cancer and chemo and all that goes with cancer treatment would just be overwhelming. Both for me and for you. And that part was right.

Cancer is and can be overwhelming. The trick is not to let it take over. There’s already so much of it that’s out of your control that sometimes it’s tempting to fall into the hole where everything sucks because, y’know… CANCER.

Fortunately, it’s not really like that. Sure, there are good days, bad days and in between days. I don’t think it matters that much which chemo drugs you’re on. The ratio of good to bad days changes some. In my experience, it shakes out to be mostly in between.

So… had I decided to chronicle this all daily, I think you’d be bored to tears by now. It would be a lot of had chemo, was tired, took a nap, had night sweats, tried 10 things to counteract that, had this or that side effect, discovered I could or couldn’t eat or drink a thing so added that to my list for a separate post, and the weather was rainy/cloudy/sunny and I was or wasn’t able to get anything done today. Yawn.

For the most part, I’m okay. There are good and bad and in between days. There are things I can’t do and I need to get someone to help me. The cancer part is temporary. The treatments and their side effects are mostly temporary. When I run up against something that is going to be long lasting and it’s going to be a problem, I let myself be angry about it. I let myself feel the fear of whatever that means for me long term. And I’ve let you live my stream of conscious on these things.

In the meantime, there are other things on my mind. There are things I need to do while I’m “stuck” at home, and I know they’re not horribly exciting or interesting, but they’re things I need to deal with sooner than later. I just realized I haven’t done a post yet on end of life planning. Another one of those fun things cancer throws your way.

I’ll still post things about the changes from chemo. As I get closer to the radiation, you’ll get my anxiety head on. Then you’ll hear how thrilled I am to be going back on chemo. And eventually, you’ll share my joy at being done with this year of hell. Right now, I’m 4 months into this journey. Not quite the halfway point.  I’ll try not to make you suffer too much with the filler stuff while you’re waiting to hear good news.

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