All I can Do is Smile


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Social Experiment

Yesterday, I busted out the blue wig. I got far less looks that when I go au naturale, but that could be because I was shopping at Japanese stores. Most people didn’t give me a second glance. One woman asked if it was my real hair.

Yes, this is really my hair.

In any case, I’ll bust it out a at least a few more times because it keeps my bald little head warm! 🙂

On to the administrative item: my visit with Dr. Tewari last Thursday.

Side note: The man NEVER sits. EVER. I learned a few months ago that one can receive a pelvic exam with the doctor standing up.

We’re fairly certain that the fever that landed me in the ER was due to the gemzar chemo, not an actual virus. I’m apparently on a higher dose than normal because I’m young and can handle it. I’ll naturally “de-dose” as my CA-125 counts go down and there’s less cancer. We do a full body CT the week after my full 3rd round. From there, we’ll see what progress has been made.

I almost wrote, hopefully, blah blah blah — but I stopped myself. Hope is all fine and good, but I KNOW that my results will be good and that the final 3 rounds will kill the microscopic bits of this bastard cancer. I have to keep thinking this way, or else the “what if” voice creeps in.

This may turn out to be a long term fight, but for now, I’m not considering that an option.

“Whatever comes, face it on your feet.”

– Lan (Robert L. Jordan, “Wheel of Time”)


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How quickly things can change

Hello dear friends and family…

Last week the BFF came into town and I had a decent amount of energy after Day 1 of Round 2. We had lunch with my MIL, bought weird masques that moisturize your face AND make you look like a cat (those crazy Japanese)….

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I look totally normal and not like something from your nightmare

She cooked and cleaned, and all around was delightful to have. Duh. I was sad to see her go Friday night. So sad in fact, I landed myself in the emergency room. (I’m KIDDING Hil. It’s okay that you left when you did!)

Let me back up.

For Day 8 of Round 2, I got the pleasure of a blood transfusion because I was anemic. I received two units, one of O- and one of O+ (I’m O+, anyone who is O- or O+ let me know so you can donate your blood to me should I need another transfusion. They usually require 10 days lead time). Then I received my regular chemo.

The nurse kept going on about how I was going to have all this energy and to take it easy (ha), but when Saturday came, the opposite was true. I spent the day sleeping, getting very angry with Kenji each time he woke me up to eat, or to walk, or to eat some more. In hindsight, this was the best thing for me (yes, Kenji, I admit it) and I felt a bit better on Sunday.

My brother came by to color easter eggs, where we learned it’s far more fun as kids who don’t have to set up and clean up afterward.

Mostly though, I was just cold. I couldn’t get warm. Chills constantly, so much so, that I kept taking hot showers to get my core warm.

So, when it was time for my white blood cell shot at the nurse’s clinic, I went with base layers on and a beanie. And a scarf and a jacket. When the nurse checked my vitals, I had a 103-degree temperature. I blamed the beanie and took it off, waiting 5 minutes and we tried again. Only 102 this time. Protocol dictated that we notify my oncologist and then off to the ER I was to go.

They made me remove my many layers, put on one of those bullshit gowns and gave me a sheet to cover me. Turns out, your body has chills when it has a fever as well as when you’re cold. So I had to lay there shivering, while they took every possible test and bodily fluid from me to see where the fever was coming from. Then, they gave me some Tylenol to bring the fever down, and general antibiotics to start killing whatever may be causing the fever.

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Giving thumb’s up because what else could I do? I felt fine minus freezing my ass off in that room. And yes, the rest of the hair is gone. It was coming out every time I did my hair. This is easier to manage. Watch a time-lapse video of me shaving my head. (Kenji got the spots I missed.)

After waiting for initial test results, which all came back clear, the on-site doc made the call — they were keeping me overnight for observation. Which technically, wasn’t “being admitted” in Kaiser-land, whatever that means. Some of the cultures that were taken (throat, brain — er, I mean, nose) would take a few days to come back, so I was to be in the hospital until they did so. (All I know, is we only paid $180 for three days at the hospital, so I think “observation” gave us a discount. I’ll take it.)

All that being said, being in the hospital sucks.

Your ass is constantly hanging out of your gown, they’ve got you on an IV for fluids so you have to pee every 2 hours, and the constant machine beeping due to my IV placement was a crazy-making. The nurse on my LAST DAY finally showed me how to reset the IV. Would’ve been helpful two days sooner!

But seriously, the staff at Kaiser are incredible. Every single person I encounter there is courteous, kind, and wants to help in any way they can. They kept apologizing that they couldn’t figure out where the fever was coming from.

They nailed down that everything was clear yesterday (April 18) and spoke with my oncologist, who mentioned that sometimes the chemo itself can cause fevers.

Well, hell.

I meet with him tomorrow, so we’ll go over what the plan is moving forward. I’ve already got my trusty thermometer to check my temp daily (98.9 today) and keep a better eye on that.

And now I’ve got 15 days off. Hoping for more energy as the days go by, but I’m glad to have made it through that latest ordeal. Leaving the hospital for home made me SO happy.

Shout out to my mother-in-law for staying with me both nights since Kenji had to be on the road by 5am both days, and that’s hard to do sleeping like shit in a hospital room where you aren’t the one in the bed. My support systems makes my cup runneth over.

So, we’re on our way back up! We’ll see what tomorrow’s appointment brings.

Sidenote: I’ll be adding new chemo times and visitation hours to the schedules soon! Be sure the check in and sign up if you’re able!


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In the thick of it

I realize a lot of my sorrow last round was self-made, sort of. I say sort of because there’s no way I could have known what to expect (release control) but I did know that I should hold a schedule (keep control) that meant to took my anti-nausea medications on time, and eating right, etc. Instead, I decided to just wing it.

Um. No.

This girl doesn’t just “wing” anything. (Something I’m working on in therapy — more flexibility and spontaneity acceptance.)

So this time around, I am on top of my shit. And of course I’m feeling better. I have so many damn alarms for so many different meds and times, but I’m doing the work. That’s the only way I’m going to beat this bastard.

And here’s my latest ‘do — just for you. 🙂

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Looking towards Round 2

First off, I fixed my typo of Round 2 being done.

Freudian slip. I wish.

I count myself correct in my previous assertion that I’d forget how shitty this would be.

And I know I’ve complained about constipation before — probably half a dozen times (I’m not even going to go back to round 1 and find all the times) — but seriously! That’s the one thing no seems to think is pertinent to mention. CHEMO PATIENTS OF THE WORLD: GET YOUR STOOL SOFTENER NOW!

TMI ALERT:

I had to wear a panty liner to my psych appointment because I was prone to loose stool, or as the kids these days call it, “sharting.”

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I had to live it, so you have to live it with me.

And with that, last week sucked a lot. And so did this weekend.

Today is 1,000% better. Things are moving along (if you get my hint, wink, wink, nudge, nudge). My next round starts of Friday, so hopefully this feeling continues (I’m not even asking for better).

My appetite is still a struggle. I got as low as 117lbs, which I haven’t seen since I got out of the hospital the last time after 7 days without food; and before that, probably junior high school?! But, I’ve worked with my psychiatrist to change up one of my medications for another. One of the side effects is increased appetite. The one that I’m nixing is known to cause nausea. Done and done.

I’m also still diggin’ on those cream shakes. Kenji bought dates this weekend, so I know what I’ll make this week for my “Fat Shakes” (which we’ve aptly named). I call my sulforaphane shake my “She-Ra Shake.” That’s a whole nother blog post on it’s own, and I may make Kenji write it himself.

Moving along…

Fatigue is definitely an issue overall. That’s why I like having something to look forward to on my good days so, you know, I actually have to shower and get dressed. Damn you TempurPedic for making such a perfect product! I’m talking with my boss this week to see how I can continue to contribute — without adding any stress to my life. It’ll be the same situation as before, where I’ll work on projects that aren’t time sensitive.

That’s all for now, folks.