Thursday, September 19, 2013

You know what they say about desperate times...

This morning my Mom and I reached the point of desperation. Rafe has figured out how to get water from the front of our fridge. He finds a cup (any cup - if he can't find one, a bowl, or bucket, or shoe will do. Then he fills it as full as possible, pours it on the tile floor, and promptly slips, banging his head on the way down. As soon as he's done wailing and the floor is mopped up, he repeats. Enter the duct-tape/cutting board solution.
He's not too pleased about it, but he'll get used to it. We all will, because I'm pretty sure this isn't coming off for the next year.

Monday, September 16, 2013

Slow moving life

As I type this, I'm lying in bed. Rafe is napping, and Lydia (miracle of miracles) specifically requested her "quiet time" today. Sometimes quiet time consists of coming out eighty-seven times to complain or ask me for snacks, but today, we pulled out our collection of books on tape (yes, actual tapes). The whole collection (probably 50 books or so) was a Freecycle score from years ago. Each book and tape has it's own bag, and a portable tape player came with the whole shebang.

I'd just like to say that this is a rather pleasant way to spend an hour.

The first book she listened to/read was "Where the Wild Things Are." When she was done, I asked her if she liked it. "Dere were lots of Waurs (Roars) in it. Max wore a costume like me! It was kind of scary."

I really like her, and I like how she's getting so old and interested in things and articulate and capable, even if her stubborness, passion, and independence sometimes result in very emotional miscommunications.

Friday, September 13, 2013

Cute hair

I am not great at getting Lydia's hair done everyday, but sometimes I try. I saw this hairstyle on a couple girls at church and on facebook and though I'd give it a shot. 

Cute, huh?

Thursday, September 12, 2013

What to do when you are an extremely awkward human being

Had my first professional massage today.

It was...interesting.

I'm not sure I'll try it again, but I wanted to see if it's just that I don't know how to get massages and did something wrong, or maybe it's really just that I'm totally sociophobic (made-up-word, I know) and should never be allowed to interact with other humans.

I assume that even non-cancer massages have some paperwork involved, right? Liability and all that, in case they massage a nerve and paralyze you for life (tell me that can't happen)? My cancer massage had lots of paperwork and I felt like I was trying my hardest to pass a test, but I didn't know which answers would allow me to pass and actually get the massage. Like they were just going to say, "Nope, shouldn't have checked that box. No massage for you. Leave now." After the paperwork, which already felt test-esque, the massage therapist asked me a ton of questions about my cancer and my meds and where my pain was (the point where she asked if my pain was under control felt like a dealbreaker - like since I'm not in terrible pain, I shouldn't be taking up a valuable time slot where another actually in pain person could get their cancer massage. But apparently I can get a massage even if I don't hurt that much). So that was the oral part of the exam.

I decided to just get her to massage my feet and calves, since I've had some cramping in them - possibly related to chemo, but maybe just because my sedentary lifestyle became even more sedentary over the past few months (if that is even possible) and my muscles just want to be used. So I didn't think that I would have the issue of clothing or non-clothing. Because let's face it, that's really my concern about massages. But then she said that it would be easier if I were pantsless, unless I wanted her to massage my thighs through my yoga pants. That sounded weirder than being covered by a sheet, so I agreed, but really, I was thinking "Why are we even touching my thighs?" The answer to that question is probably something to do with circulation or other nonsense. And then I realized that maybe I should have gotten some non-religious underwear for this particular situation. But I didn't realize that until after she had left me to undress and slip under the sheet.

This is tmi, obviously. I'm just such an awkward human being. She dimmed the lights and turned up, for lack of a better word (synthesized extended notes vaguely reminiscent of ocean waves doesn't trip off the tongue that well). Then she started rubbing my feet and I had no idea what to do. Should I talk? Should I close my eyes and pretend to be asleep? It's kind of like the dental hygienist or the hair-stylist question. Do they expect you to chit chat? And what about? I have absolutely no idea what to do in those situations, but I especially had no idea about what to do in this massage situation. And then I just kept thinking about it and getting more and more weirded out by myself. About halfway through I remembered that I needed to be back in plenty of time for Adam to take the car to school and didn't know how long it had taken and was going to take and I wanted SO BADLY to check my watch. But I didn't. Aren't you proud? I just sat there like some sort of stuck-up queen with an underling massaging her feet.

So here are my questions. Will you guys help me be less of an awkward person in the future if I ever try to do this again (unlikely)?

  • Have you ever had a professional massage? Full body or just an appendage?
  • Did you enjoy it?
  • Did you talk to your masseuse? If so, what about?
  • Was it a clothed or non-clothed massage? Dare I ask about underwear or no?
  • Would it be weird to give them specific instructions about where you want stretched or kneaded? Or is that like criticizing their professional skills?
  • Should I give it another try? And should I stick with the feet or try something else?
Please help!

Wednesday, September 11, 2013

Taking loungewear to a whole new level

Guys. I discovered yoga pants this summer. I had seriously never worn them before. Amazing. My fantastic sister gifted me with a pair, as well as an even more amazing pair of yoga capris. I know, I'm getting fancy here. And then, I found this little gem at Plato's Closet.
In case you're wondering what you're looking at. Those, my friends, are an authentic pair of corduroy, paisley, pajama pants. I win at life. They were on sale for $1!

So now I spend virtually all my time wearing pajamas or yoga wear, supplemented occasionally by my fluffy pink bathrobe (c/o Adam's parents). This is the life. Feel free to tell me how jealous you are of my paisley corduroy pajamas in the comments.

Tuesday, September 10, 2013

Tell me I'm not the only one

All you moms out there (there might be 3 reading this...), is it weird that I still get the urge to nurse my baby sometimes? Rafe has had a few rough nights in the last week or so where I have gone and comforted him multiple times during the night. Every single time, I feel like I should just settle into the rocker and nurse him back to sleep. He hasn't nursed in about 4 months. Does anyone else feel like this ever?

Monday, September 9, 2013

Lydia's Fancy Nancy Bed

Given my (ahem) condition, my Mom spend much of the summer here in Indiana, taking care of us. On one of her last days here, Lydia woke up with the request that we make her bed fancy, like Fancy Nancy.
So, we took a trip to the local ReStore and found some stair ballisters. A few zipties, two lace tablecloths, and a crib sheet later, this is what we came up with.

She loves it. Thank you Nana!
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Friday, September 6, 2013

National Donut Day

One of our good friends mentioned casually one day back in June that it was National Donut Day. She even supplied some donuts for us. They were delicious. But not quite enough. It was National Donut Day after all.

So we bought more.

And ate them all.
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Thursday, September 5, 2013

Why radiation treatment is like being pregnant, except for the important part

Both of my pregnancies were relatively easy. I have been blessed. Friends of mine were throwing up for all nine months, or were put on bed rest and had to rely on the kindness of friends and family in order to keep life in order for the duration of their pregnancy.

I would like to think that I now know a little bit how they felt. Let me explain my experience with undergoing 14 sessions of full brain radiation, as well as targeted radiation on my lower spine. My radiation treatments were last April and May, but I've been wanting to write down some thoughts, memories, and comments, both so that I can remember and reflect, but also to offer a guide to anyone going through anything similar.

When radiation started, I could barely move. Cancer had collected and created a huge mass on my lower spine, which had eventually resulted in a spinal fracture. It hurt to bend over, to put weight on my back/legs at all, to stand up, to lie get the picture. As I walked into the radiation center, I leaned on Adam so that I didn't have to use my walker. Like most days, we were the only ones in the waiting room. We filled out paperwork and I received my own personal card to scan when I came in everyday. The nurses in the back would then see that I was there and would come get me when I was ready. We had come in for prep a few days before, when they had made a creepy mask of my face and had discussed the whole procedure with the doctor.

I have to say that all the techs and nurses were amazing. The whole experience was not comfortable, but they tried as hard as they could to help in any way possible. It was a little bit odd, the whole thing. I saw these people 5 days a week for nearly 3 weeks, but we didn't really know each other, so we'd ask each other generic questions and make small talk, but I don't remember their names (terrible person here).

I always enjoyed sitting in the center's waiting room. Gossip magazines are my guilty pleasure, reserved for doctor's offices, and they had a goodly supply, as well as interesting National Geographics and Reader's Digest (Is your marriage healthy? Take the research-based quiz! Verdict: Adam and I are doing great, but we need to take vacations together without our kids. Darn). Adam probably thought it was weird, but I always wanted to sit by the fish tank. The first day I thought "what's the point of having a tropical fish tank if all your fish are tiny and black?" but in the coming days I noticed a large, brilliantly yellow fish who always lurked behind the coral. She (yes, I'm arbitrarily assigning her a gender) gradually became more confidant (or I projected increasing confidence onto her) and by the end of the 14 days, she would greet me at the front of the tank when I came in. Until that point, it was a fun hide-and-seek to keep my mind off the coming treatment.

Before my first treatment, I assumed that I'd usually just drive myself down, do the 15 minute radiation thingie, and go home. Easy as pie. But as soon as I was left alone on the slab, the stickers on my abdomen lined up perfectly with the red lighted lines coming from the machinery, and the blast doors had closed behind the techs, I knew that I would never come to do this alone. The loneliness in that room as the machinery made noise and twisted and turned around you was overwhelming. Lying there, I thought of the fact that what they were doing to me was so harmful to humans that everyone else had to lock themselves out via the foot-thick door. The loneliness never went away, although the panic that began to build after those first couple awful days eventually lessened.

Radiation has a smell. Or at least it did to me. It only happened when they were irradiating my brain, not my spine, so maybe it was just that somehow my olfactory nerve was triggered, but I can still conjure up a sickly sweet smell vaguely reminiscent of lemon cleaners and salty beaches. Still makes me nauseous.

I'm being melodramatic. It wasn't that bad, and it helped me a great deal. The reality is that those first few days were awful. I went through the treatment, felt fine, and went home. I spent the next 6 hours throwing up every hour or more. We did some research - people receiving full brain radiation sometimes get nauseated because of swelling in the brain. I was on some anti-inflammatory steroids, which was supposed to counter that, so the internet suggested playing with the timing of my meds, to see if we could manage the nausea. The next day was no better. Fortunately, that was a Friday, so I got a weekend off. Monday loomed in my mind and the anxiety nearly overwhelmed me. That morning, before I went in for treatment, I called ahead. "Is this normal? Do people just throw up for weeks?" They promised to get me some meds.

And then I was fine. Zofran, the best friend of pregnant women and cancer patients everywhere. Dissolving that tablet under my tongue was magical. Any nausea dissipated in minutes, and the future seemed much less bleak.

It became normal to hop in the car with Adam at quarter to one everyday to drive down to the center. It was our little date. We'd stroll into the waiting room like we owned the place, scan my card to check in, pick out our magazines of choice, get settled in front of the fish tank as I said hello to my sunny fish friend, and wait. It never took lawn for a tech to appear and usher me to the back rooms. I'd hop on the slab, expose my stomach stickers, and get all lined up. The techs would leave, the doors would close, and I would keep my eyes closed while the machinery did it's business. The doors would open, techs came back in and put my facemask on, lather, rinse, repeat. Afterwards, I'd go fetch Adam and we'd head home.

After a week or so, the exhaustion I'd heard would happen happened, and I'd spend my afternoons dozing in a lazyboy recliner. My hair started coming out in clumps on day 10, so we shaved it off to prevent our drains from having to do double duty. Getting ready to leave the house became incredibly easy without hair to do. Just grab a cap and go. And I could eat! It was fabulous, especially after being worried that I'd spend 3 weeks cautiously nibbling saltines. I ate anything and everything, and I think actually gained a few pounds over the whole period.

For some reason, the last couple of days of treatment ended up with some nausea that Zofran didn't beat, but overall, it was so much better than it could have been.

So, here's where I sum up the whole experience. Having whole brain radiation is like being pregnant because you start off by losing your lunch daily, doctors take pictures of your insides halfway through, and you want to sleep all the time. Of course, certain aspects of the whole experience are the complete opposite of pregnancy. Unlike pregnancy, where I ended up the nine months feeling like a beached whale, I couldn't move at the beginning, but by the end I was hopping on and off the table like a spring chicken (which, while not nearly as good as having a new, beautiful baby to show for your trouble, was pretty amazing to me at the time). Also, most people's hair gets thicker during pregnancy. Me, not so much.

As a postscript, I would like to mention that I don't think the nausea I experienced during radiation in any way equates to some women's horrific experiences with nausea during pregnancy. However, chemotherapy is a different beast and now I truly, truly empathize with anyone who have horrible nausea, regardless of the cause.

Wednesday, September 4, 2013

Like father, like son

Rafe loves baths. In fact, he has, on more than one occasion, decided that being naked was not necessary and plunged into the tub fully clothed.

I truly wish I had a copy of the picture of Adam at the same age doing the same thing.
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