Do you remember when I had my last chemo teaching session? The super short one, in which the nurse (Megan) said as soon as she sat down across from me “Life gets better from here,” because we were removing Oxaliplatin from these next—and final—six cycles of chemo?

And remember when I wrote that exact quote—”life gets better from here”—at the top of the page I had open in my notebook and told her I was gonna make her sign and initial and date it because last time I sat in this room with one of her colleagues for a chemo training I was told, “as far as chemos go, FOLFOX isn’t that bad” and it was, in fact, terrible?

And remember how she said most people don’t even need Zofran on these cycles but I pushed for an aggressive med plan, just in case, because I needed one last time? And she obliged. And we joked about her quote the whole time and I told her I was going to hunt her down if something bad happened?

Well.

I was right.

Something bad happened.

Last week’s chemo was the worst round I’ve had.

I ended up in the emergency room for, among other things, chest pressure and shortness of breath.

Here’s what happened, the few small things I remember about the ER, and where we stand:

 

What Happened

Monday – Day One of the Cycle

It was Labor Day (cancer doesn’t care about holidays). Did the normal routine – port access, blood panels, upstairs for chemo. Blood work was perfect. “A” student. Infusion went off with no problem. Again, “A” student.

(Remember, I’m getting three drugs I’ve gotten before, plus a whopping 16mg of liquid Zofran, like before. Love it. Nothing new here.)

Mom and I went to Cava for lunch. I was tired and hangry. We were at the infusion center for a while (Holiday. Fewer people working.) 

I was pretty tired that afternoon, which was unusual.

My stomach hurt when I went to bed but that’s normal for Day One. A Pepcid and some GasX usually kill it, so I took one of each and did a gentle abdominal massage with some jojoba oil like I always do on Day Ones. 

I took the meds they told me to take (which I had taken before) and went to bed.

I slept 10 hours.

I woke up feeling like I had not slept.

 

Tuesday – Day Two

Usually on day one and day two of the cycle, I’m great. It could be because of the steroids, and I didn’t get steroids this time. That was the plan. This day two, I started groggy af. A little queasy. Took my Zofrans as directed throughout the day.

I had therapy. Virtual. I was tired.

That evening I had a breast cancer support group. Virtual. I was tired. I told them I didn’t really feel well.

This was weird because I distinctly remember being fine on day two nights before because that’s when my friend Gary came to visit one time in the last cycle and we had a wonderful time.

There is no way I’d want Gary over on this day two. 

I was bone tired. Chemo-style. I couldn’t really sit up. Walking up and down the stairs took a lot of effort. I had wanted to work on the IG plan for my blog but my brain couldn’t think. I had no appetite but ate a little anyway.

Other than what’s above I don’t remember what else happened that day.

 

Wednesday – Day Three

I woke up in the middle of the night and had to pee. When I sat up I felt chest pressure. I peed, got back in bed and decided I wasn’t too alarmed. It felt like… I had hiked some elevation? But it passed and I was exhausted so I didn’t think anything of it. 

I did, however, feel very… toxic. It’s hard to explain. It’s like I’m being poisoned. Which I was. I felt something like it once – when I vomited up the steroids night two of round one last time. It’s really…the worst I’ve ever felt ever in my life. I don’t know how to describe it other than I felt toxic and like I was poisoned.

I slept 9.5 hours.

I woke up feeling like I had not slept.

I felt so bad I cried.

I could not get out of bed.

But I had to get to the infusion center to get unhooked from my pump (Sir Spits A Lot), so I eventually did.

The walk down the stairs and to the car made me winded. I couldn’t sit up in the car. The chest pressure came and went. When we got there, the concept of walking from the car to the elevator seemed impossible. I did it. I was winded. Felt the chest pressure again.

I was checked in, taken to a room, sat in a chair, couldn’t sit up, cried.

Anyway. Blah blah, they were alarmed, escalated to the PA, who escalated to my oncologist, who sent me to the ER.

 

The ER

First, Noah Wylie was not there, which was very disappointing.

Second, the emergency department at Fairfax Hospital is, apparently, the fourth busiest in the country. As my brother, who was a firefighter in the area, told me after the fact, “this is where we’d take people when they were basically dead.” Lovely.

I knew there were a lot of people there because:

1. After triage, I had to wait a long time for a room and at some point was too weak to sit up in a chair
2. I heard a lot of voices but couldn’t look up to look around and see what was going on. I don’t know what this is. Dizziness? Overwhelm? Weakness? An extreme physiological stress response where my body can’t process more sensory things than it needs to? I don’t know.

We know nothing.

Except a little.

Here’s what I do know:

1. I was triaged fast. The guy who did my ECG and blood work was a firefighter. When he was taping the leads to me he said, “I see your tattoo–the 50. Does that mean you’ve been to all 50 states?” Love it. Worth the four hours I spent there. Actually, that’s not true at all but it was a lovely moment. The only lovely moment. They did typical blood work and all the ones you do to see if you’re having a heart attack. I was not having a heart attack. (I did not think I was having a heart attack either but I was so bad I did not feel safe going home.) All tests came back normal.
2. I had to wait for a room. At some point I stopped being able to sit in a chair and my mom tracked down a nurse and got a little mama-bear and was like, she needs a stretcher, and this awesome nurse made that happen then like 45 seconds later my room was ready.
3. I met a nurse. I met a doc. I waited forever for a chest CT to check for blood clots and a pulmonary embolism. I was finally wheeled back as soon as my mom went to get soup (I had eaten 3 peanut butter crackers and a handful of goldfish. It was about 5pm?). The kid who took me back was funny. When I said it was cold he said, “this is where we keep the bodies.” Idk. Maybe it wasn’t a joke.
4. CT with contrast. Contrast hurt this time. Whatever. I felt like death anyway. The people were nice. CT results were clear.
5. When I was being discharged the doc asked me, “do you think this could be stress related?”

Ma’am.

I mean I’m not the one with the medical degree but do you think at least my body is physiologically stressed after having had a 46-hour steady drip of poison unplugged from it just four hours ago?

She’s lucky I couldn’t really talk or keep my eyes open.

So, they sent me home.

 

Where We Stand

Dr. Cannon went to a conference at the end of last week (he’s allowed I guess) so we didn’t get to speak until yesterday. I went into our convo with an outline of symptoms and the timeline (are we surprised?) and my bottom line: I will not do that like that again.

Here are some other weird symptoms I had/am having:

• On day four I developed mild hypersensitivity in my fingertips. I saw my PT this past Monday for the nerve compression I had been experiencing. She can’t diagnose it (yet?) but it could be the start of neuropathy which can—though rarely—have delayed onset. So we pivoted again and our session had little neuropathy exercises, which were kinda cool. 
• My Oura ring showed four consecutive days of “Major Signs of Strain” detected for the first time ever. I’ve had my Oura ring for a year.
• My blood pressure is currently high. My baseline BP is low. Comically low.
• I have not been able to sleep more than five hours each of the last five nights.
• I got my period yesterday for the first time in six months. And just in case you’re not tracking – I’m still not having sex and therefore am not pregnant. (But they still give me pregnancy bloodwork tests all the time. It’s stupid and it’s triggering. But I digress.)

I talked to Dr. Cannon yesterday. Here’s the plan:

1. All chemo is canceled until we have more information
2. I’m getting tested for a blood infection (from the port maybe?)
3. My port is getting tested to see if it’s all good
4. I have a referral to a cardio oncologist. Cardiotoxicity is a very low-risk thing that can happen with Herceptin–which is why I get quarterly echos, which have all been fine. Again, “A” student. Coronary vasospasms are a low-risk thing that happen with 5FU—the chemo I was kept on. The cardio oncologist will do all the things and hopefully eliminate the big scary stuff.
5. I’m getting a full body CT scan, which is what I’ll get when we start the surveillance stage for the rectal cancer.
6. I’ll do my Signatera blood test as planned.
7. I follow-up with Dr. Cannon on October 8th, at which point we’ll make a decision about whether or not I continue chemo, based on the data we get.

Dr. Cannon said what I was describing was a “reaction” to the chemotherapy, not “side effects,” and that it’s possible for people to develop reactions later in treatment. My body is pissed, to say the least.

Dr. Cannon also told me there’s a very low likelihood I will continue chemotherapy. 

I told him I don’t trust shit I’m told anymore, until it happens.

Also, he’s the best and we love him again.

Last Wednesday I told the PA to tell him he was fired.

That was a joke.

I think?

So, how am I feeling now? I had OK rebound days Friday – Sunday.

On Sunday I made it over to a friend’s house to watch my football team play something that looked like football, until the last pass. I had insane creative downloads for writing over the weekend, which was awesome. And now I’m just so tired I have no feelings about any of this.

That pass was total shit though.

 

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