All I can Do is Smile


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Home Sweet Home

I have 3 days of antibiotics left no more antibiotics left  and there’s really no good word to describe how amazing it will be to NOT have an IV in my arm (I’m on #5) any longer.

Oh, bathtub, I’m coming for you. And pool. And jacuzzi. And basically any body of water where I can soak up the sun/relaxation.

The nurse practitioner I met with this morning for a follow-up agreed enough was enough, and as she put it: “It’s your body.” I said, “We’re done.”

Being at home made the suck of self-administering these antibiotics about a million times better than letting a nurse do it in a hospital. We had a small snafu two days ago when my line came out, but the nurse was able to fix it without having to poke me again. Sidenote: I am now considered a “hard stick” because my veins are tattered from all the abuse of so many IVs, blood tests, and lab work ups.

Speaking of abuse, chemo really took a toll on my body and my doctor has decided that we’re stopping for now. Actually, we couldn’t have continued even if we wanted to — my platelet level went dangerously low (7,000 — normal range is 100,000-150,000), and chemo cannot be administered with those numbers.

I’m not going to lie — I was relieved to hear we’d be pausing.

We were fighting a small amount of cancer with some pretty potent drugs and he was not happy to see me land in the hospital for a 2nd time during treatment. His MO is more “watch & see,” meaning monitoring any growth before taking action versus my more “something is in there, let’s kill it with everything we’ve got now!!” approach, which clearly didn’t do me any good.

We have a follow-up mid-July to decide how we’re going to move forward. In the meantime, the focus is on mental and physical health.

XOXO


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I hate hospitals but I love nurses.

Soooooo…. I’m still in the hospital (day 9). The fevers are reduced but still happening. My red blood cell count is normal, my platelets are still low, and my white​ blood cell count is pathetic but rising. 

The nursing staff at Kaiser continues to be amazing and that’s pretty much one of the only things keeping me sane (the other being the ice cream I have stored in my fridge since I’m neutropenic [Google it]).

Clarity: I have a fridge for bottled water, since I can’t have tap. We’re taking full advantage of having said fridge.

Mostly though, I’m well enough to give a quick update. 

I’m on my 4th IV. At one point I had two going at once. One for transfusions; the other for antibiotics. 

See the blood bring transfused?

The one on my right hand got angry, so IV #4 was on the docket. But not before I had a proper shower. My nether region was most pleased. Three days without a shower will do that to you… Just FYI.

Good amount of swelling

Overall, I’m doing okay. I’m sick of being here. I’ve only had one complete meltdown, which I consider a win when you’re relegated to your room. Hoping for better WBC counts tomorrow. Send me white blood cell vibes. 

XO


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The completion of Round Four and how I’ve found myself in the hospital for the past week.

Fair warning, this is a long post.

To say the fourth round of my chemotherapy was difficult would be a vast understatement. The word “compounding” took on new meaning, as the chemotherapy side effects legitimately were getting worse. More fatigue, more nausea, more suck.

My first week brought such intense nausea I had to increase the dosage of my medical marijuana 2 fold in addition to staying on top of the anti-nausea medications. Even that didn’t relieve everything in the way it used to.

Leading into my 2nd infusion, I started getting fevers a couple days before. As discussed with my oncologist, I tried to manage the fever with Tylenol. I was able to get the fever down each day, but come morning, a 103 degree temp greeted me. The infusion center still gave me my chemo, and I went home and promptly fell asleep and woke up feeling like utter shit. UGH.

Saturday, May 27th we had tickets to see Jake Shimabukaro (seriously, click the link and be blown away). Though I wasn’t feeling super, we made it happen. And then there was the encore. And the 2nd encore. Never have I wanted less for more music. When the 2nd encore began, I wanted to cry.

On our way home, I knew my fever was back. But I was resistant toward going to the emergency room. A text to my friend and former oncologist, Katharine Tierney, confirmed I needed to go in.

Fuck.

We went home first. I ate something, took my evening medications, and we packed a bag knowing we would likely be admitted. The ER was popping on Saturday night at 11pm, so I had to sit and wait with a mask on. I was half tempted to ask people what they were in there for so I knew who to avoid sitting near. Not exactly appropriate.

Eventually, we got into a room at the ER and they sent me up to the hospital for longer term observation. This does not count as being “admitted” but “observed” (Kaiser considers this to be different, and lucky for us, observed is a flat rate, no matter how long we stay).

And so here I sit, still in the hospital, likely through early next week. My fevers kept spiking each day (105! New record!) and would not go away. My platelet count was all over the board, but super low; red blood cells low; white blood cells low. I actually can’t leave my room for fear of infection. When I’m up walking, I’m confined to the room dimensions, and basically look like a crazy person who doesn’t know where they’re going or what they are doing.

They’ve got me on two different antibiotics; I’ve been getting platelet and blood transfusions. And we’re just waiting for the fevers to go away.

Here’s to hoping…


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Status Report: 50% complete with chemotherapy.

I’m feeling better and better (wtf?) each round. Or rather, I’m getting used to what each round means for me. I recall last time I went through chemo telling Kenji I was finally getting the hang of everything the 5th round.

Out of 6 rounds. So not helpful.

The fact that I’ve found a sort of rhythm by the end of Round 3 hopefully means that the final 50% of this bullshit will be manageable in a way it was not Round 1.

The first 4-5 days after chemo are the worst with the 3rd day being just miserable. The fatigue is becoming cumulative, but I find that if I have some momentum (putter, putter, putter) I keep the fatigue at bay. I often wish this puttering time was spent working on fitness, but some days I feel lucky to just be able to keep moving around. And so I remind myself that I am lucky, and my body is doing the best it can, and it’s a little busy kicking cancer’s ass right now, so chill out already.

What am I doing for fitness though? See below, or skip to the next paragraph. (read: Hilary do this.)

That being said, I am doing yoga on a mostly daily basis. I’ve got a rad app from Gaim that gives me 15-60 minute themed series, from relaxation to stretching. I also have passes for Bikram Yoga, which is my zen place. While that’s all fine and good for my core (which is the core (haha) of other strength), I’ve decided I need more of a circuit-style routine focused on the different muscle groups. Leg day, here I come. Activities like riding and walking just seem to make things worse. Light weights with high reps will be good. I’m glad I’ve kept my gym membership.

Moving right along, I celebrated my 36th birthday yesterday. I had a lovely celebration with family.

I’m getting out of the house; friends are visiting during calls for human interaction; I’m doing some hourly work for my day job. Minus the whole cancer thing, I’m doing better than about 99% of the world.

So that’s what’s up. Looking forward to a full week off and starting my 4th round on my 5th wedding anniversary. Kenji is taking me… how romantic. We’ll be sure to take a photo to show our celebration, haha!

Have a wonderful rest of your week and a most excellent weekend!


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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)….

IMG_20170413_151855

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!