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…