Old Paint

Jamie Boys 032017(The following was originally posted on my Carepages blog for family and friends during my treatment.)

Taking this Energizer Bunny and telling her she can't go 90 mph through her days can be frustrating, but I'm learning to adapt. When I need to sit, I binge on home improvement shows. One of my new favorite shows is Restored. The host restores period homes (Victorians, Craftsman's, Mid-Century) back to their original intention with modern upgrades added to the bathrooms, kitchens and floor plans. He claims his favorite thing to do is strip years of old paint from the wood cabinets, doors, woodwork, and other items original to the home. I find stripping away the old paint is kind of where I'm at right now.

In the early weeks of my diagnosis, it was all about priorities and shifting into what REALLY mattered to me and to my family. As the weeks have worn on, other things have been stripped away. I've learned to let Tim and others do things for me. (Sometimes I can't so much as open a Gatorade or a parcel post box.) I did vacuum one day, boy did I catch heck for that! (Clean always feels good, though.) I may be on a vacuuming hiatus for awhile, though.

This past week has been about stripping back my looks. I might not have ever been a beauty queen, but losing my hair has been weird. My head feels. . . vulnerable. . . almost spongy. I've lost about 98% of my head hair now. I'm thankful that, for the moment, I still have eyebrows and eyelashes. The latter is most desperately needed so I can apply my "Better Than Sex" mascara. I don't know what's in that stuff, but between that and the Chocolate Bar eye shadow (yes it even smells like chocolate), I at least feel human for a few moments in the morning. I find having no hair makes me feel somewhere between being a Zombie and a homeless person.

I went through all my scarves. I must have 75 of them. (I've been collecting them for years at flea markets and shops.) Unfortunately, only a handful of them actually fit in a wrap around my head, which I am getting better at. Yesterday I got all done and felt a draft. . . whoops, missed that spot! Of course, there are countless videos online on the different ways and styles to do that. (Something else to do when I'm not allowed to do anything else.) Mark bought me a fuzzy hat to sleep in (so warm and comfy at night), and I am looking at some other fun headwear on Etsy. At least, I can have fun with it, right?

One of the gifts I gave to myself was a Netflix subscription. I've been watching the first episodes of "Grace and Frankie." In case you're unfamiliar with it, the story is about two prominent attorneys who divorce their wives so they can marry each other. Lily Tomlin is a way-out woo-woo and Jane Fonda is an upscale prim and proper. They end up living together (at least so far) so lots of hilarity as they navigate through the differences in their lives. The thing that cracked me up the most was that Frankie (Lily) was this clean eater, environmentalist and in one episode she just goes and buys HoHos, cigarettes, and booze and just starts doing everything all at once. That's kind of what if feels like for me right now. Having spent years trying not to put anything cancer-causing in my body, they now have me so filled up with drugs and chemicals, it's like, who cares? So what if I decide to have a donut, a thick chocolate milkshake, or yesterday, a thick Wendy's hamburger?

I'm not sure how I'll turn out when all this old paint is stripped off, but I do know, deep down underneath there is probably some classic features destined to reveal its original beauty and luster. I'm looking forward to that day.

Good News

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

Went for my surgical recheck today. The tumor has shrunk considerably, so that is very, very good news. The difference is very visible. Shrunken like an old mushroom. This means all your prayers and love and thoughts are working so keep it up!!

I've been sleeping a lot the past few days. Did have some night sweats last night which made me a little restless, but nothing major. Been drinking Ginger Ale and Gatorade to keep my fluids up (plus lots of water too).

The sleeping weeks seem to go by slowly and I walk around in a kind of fog. But then the steroids kick in and I feel like I want to do everything. (But I don't. I've been warned to keep myself in check.) Doing something like changing the sheets is a major big deal. Stairs tire me out a lot too.

I've been fortunate that I've been able to do a little client work and to keep in touch with people.

Lots of people have sent butterfly images. (Thanks for that!) One friend drew me a Butterfly Cotillion image. It is perfect for what I imagined. Thank you Krash!!

That's about all I have to share for now. But it's all good. Two chemo treatments down, 6 to go.

Into the Cave Part II

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

Jamie Jen RedDevilTomorrow (Tuesday), I return to UPMC/Hamot for chemo treatment number 2. . .

I see this as a half way to the half way point because I am slated to have four treatments of cocktail #1 and four treatments of cocktail #2. This will be the second of the first four. (I'll take my victories wherever I can get them.)

Today I went in for my blood work and a visit with the staff PA. My blood reports are all good. I have a handful of side-effects, all are minor in the scope of things and are common. I also started noticing some hair fall out in the last couple of days. They tell me this treatment will be the one to intensify that. (I did buy a hat. You have no idea how huge that is. I never wear hats!) I also have an awesome collection of scarves. I didn't know when I started collecting them at flea markets and as Christmas gifts that they might have such a valuable purpose. I'll have the best-dressed head in Erie county.

So say a few more prayers that the side-effects remain at the minimum, that the worst of the symptoms for treatment #2 are the same as treatment #1 (mostly I slept a lot), and I'll see you on the other side of the cave.

Butterfly Cotillion

(The following was originally posted on my Carepages blog for family and friends during my treatment.)

The first thing you think when you hear the word "cancer" is: "I'm going to die." The second thing you think is: "How am I going to live through this?" (Meaning, from my favorite Josh Gates quote: "This is horrible, this is officially horrible.”) But it really hasn’t been. Thank God for Kris who called me and said, “This could be easier than you imagine. . .” I’m holding on to that, Kris!

Week one (first treatment) and week two (first recovery), done and done. Week one equaled lots of sleep. (Taking a shower then requires a nap.) Week two. . . making soup can be done, but then a period of rest (not necessarily a nap) must take place directly after. (This is a good time to binge on HGTV.) Week one, food tastes like sand. Week two, steroids make all food taste good, even gluten-free sand-like cookies. I also want things like bacon, mac and cheese, and potatoes. (Lots and lots of potatoes.)

Side effects: I seem to run into things. I mix up words. Some things look dingy. Or maybe it’s just that I seem to see dirt everywhere all the sudden. I keep misplacing things. I’m a bit of an air-head. (Okay, a lot of one.) I need Tim to coordinate times, places, locations. . . But these are all temporary?

Tuesday I go back into the cave for treatment number two. I may disappear for a couple of days. Sleep, however, is a sweet refuge. Week one I got a lot of sleep. I could go to sleep for two hours just by sitting down. Week two, sleep was a little elusive. I figure I will catch up on week three.

I’ve been sharing with my family and close friends some of the shifts in my thinking. Tim and I have laughed about how in the 80s I stopped using certain deodorants because they caused cancer. I cut all the underwires out of my bras in the 90s. I talked to my ta-tas and told them I loved them. I ate good food. I tried to be perfect. What I learned was being perfect doesn’t make cancer stay away. I also learned that being perfect doesn’t necessarily make you happy. So now I am going for happy. In a method called Access, there is a saying “If I ___ will you bring me joy?” (If I buy you? If I put you on? If I eat you? etc.) I was thinking I might want to tattoo that around my wrist. Then I thought, why not just write “joy.” (Which then turned into a butterfly on my shoulder… because butterflies bring me joy.) I want more joy in my life.

Tim says I’m not allowed to have any tattoos until I am done with treatment. (Boo!) I decided I need to start an AFTER list. It’s kind of like a bucket list except it has to wait until after “BC.” I’d like to have my teeth aligned. I’d like to go to Myrtle Beach. I’d like to get a tattoo. (I already have a long AFTER list.)

BC. I’ve started writing “breast cancer” as “BC.” This seems to be the code among others who have been there. It occurred to me that I am now a “BC survivor.” I’m not sure if you are officially a survivor until after treatment? But I’m not a “BC victim,” so I must be on the survivor side. The thing is, there is something in my brain that hasn’t accepted that I even have BC. I hear people say it. I know they are treating me for it. But it is not registering. The cool thing about saying “BC” is it could mean anything (Before Christ, British Columbia, Bowling Countdown. . . ) so my brain doesn’t seem to care if I call it that. It could even mean Butterfly Cotillion.

Crash ButterflyCotillion

Here’s one thing I do know. When you are being treated for cancer, there are two very different words they can put on your treatment form. One says “manage.” They are managing the cancer to keep you comfortable. The other says, “curative.” They are kicking cancer's ass. My treatment form says “curative.” (Some how my brain sees this as a butterfly cotillion where all the butterflies wear cowboy boots and hats and do one of those stomp-and-kick type dances.) Take that BC!

[Update: after posting this to family and friends, artist Krash made this drawing for me of the Butterfly Cotillion]

butterfly books

butterfly sessions

butterfly blog