Lisa's F-Cancer Blog

The good news is the new anti-nausea drugs given through the IV last week helped. The bad news is they’ve worn off. Lowering the steroids also helped; the hunger hasn’t been as intense. But the nausea is worse when it’s usually better, so maybe that’s the devil’s bargain I made?

The fatigue has definitely increased. I’ve had to nap at least once or twice daily, and am in bed most nights by 9. I’ve also noticed a restlessness that makes it hard to do things. 

My toenails are super thin and fragile. My cuticles are a mess. My scalp is breaking out in parts and is more patchy; I have more areas without hair. Should make for an interesting look when it starts growing back. The mouth sores and stomach aches are ahead of schedule.

BUT I’m entering week two. Things have to start looking up – right?

BEEP! BEEP! The IV alarm is going off again. That usually means the fluids are done dispensing or need to be fixed. This noise is loud, annoying, and practically incessant given the number of IVs.

My first appointment was at 9 am for the blood draw after a vitals check. An hour prior, I applied Lidocaine cream to the port to numb it. Kayla was my nurse today (and has the same birthday as me, though I suspect a much younger year!) and said at the count of three, to take a deep breath. That’s when she stuck the needle in. I felt the pinch and it hurt briefly but then was fine. Another deep breath at the end of treatment to take the needle out – much less painful.

We had to wait a while for the bloodwork to come in before meeting with Alexa, the nurse practitioner. I told her I had trouble finding the mass yesterday. After the breast exam, she confirmed that it was indeed harder to find – and also softer. She didn’t even try to measure it because she knew it’d be difficult. Very positive signs!

I inquired about the schedule going forward and have a better understanding of it now. Any surgery I have will be after my A/C and Taxol chemo is done. I’ll be on Keytruda for a year, which means until mid-September 2023. It’s an immunology treatment, so it doesn’t have the same kind of side effects as chemo. It only impacts the immune system. When chemo is done, I’ll get Keytruda every 3-6 weeks (to be determined). Once I start weekly Taxol chemo, I won’t have to meet with the team every time, so those appointments will be faster.

BEEP! BEEP! That time it was me.

We met with Dr. Brufsky for the first time since my diagnosis. I asked about lowering the steroid dose because of the uncontrollable hunger. He gave the ok to lower the IV steroid from 10 to 8 (last time it was lowered from 12 to 10), and said I could take four doses of the pill form instead of six. I hope that helps, and that it doesn’t make the side effects worse (one of the main reasons for taking it).

I asked about recurrence, but there’s still information we don’t know. There’s the breast imaging I’ll be getting in late November, and then the surgical pathology. If I have a complete response during this process, that lowers the risk. Dr. Brufsky said there’s a 65-75% chance this will go away completely with the care plan. If that’s the case, then there’s only a 10% chance of recurrence. If it doesn’t completely go away with the current care plan, then I’ll have chemo in a pill after surgery.

Depending on where things stand after surgery, Dr. Brufsky will make further recommendations. Hopefully more chemo won’t be needed. Radiation might, especially if I end up with a lumpectomy.

For today, he prescribed a new anti-nausea med (Emend) to be given through the IV. I got that and something else; one lasts for three days and the other for five.

DRIP! DRIP! I can hear the IV fluids doing their job. And now that I’ve noticed it, I can’t tune it out like a hearing person!

I was treated to a foot massage again. I also got a sandwich, but could only stomach a few bites of it and the one I brought. I was nauseous before the chemo even started. Kayla calls this anticipatory chemo. And now anything I eat while there will have the chemo association and therefore induce nausea. That means leaving my favorite foods at home!

BEEP! BEEP! Three of the four A/C treatments are done! Only one more of this hard hitting stuff. The cumulative effects of chemo are supposed to kick in around now, which is why I now have meals from friends queued up starting on Monday.

But for now, my parents are here. They came in yesterday, bearing a delicious homemade meal (plus two future meals thanks to leftovers!) and my favorite homemade sugar cookies! Mom had asked if I wanted anything, and I said at some point during treatment, I’d love the cookies. Lo and behold, she made them this week! Thanks, Mom!

Those damn BEEP! BEEP!s are going to haunt my dreams. Happy Halloween!

The two most asked questions I’ve gotten this week are:

How are you feeling?

and

How are you doing emotionally?

Physically, every day is different. Generally, I seem to be following the same pattern as before. The first week is the worst with the nausea and then the extreme hunger from the steroids. When those finally improve, the mouth sores make an appearance as if to say, “Don’t forget about us!” One dose of Magic Swizzle seems to do the trick.

Next comes the headaches/migraines and terrible stomach aches. Last time, I had a full on migraine for at least five days. This time it’s either a headache or a slight migraine. So, some improvement?

Throughout it all of course is the fatigue, which varies in its intensity.

Today? I have a headache, constantly watering eyes, and am tired.

But I’m definitely appreciating the benefits of not having hair: quick showers, a quick morning routine, not needing to shave, and no bad hair days. Everyone who has seen me bald agrees that it looks good. Apparently I have a nice shaped head – who knew?

Today was also my annual dermatology check-up. I figure if I have skin cancer, it’s being zapped by the chemo, but I kept the appointment to make sure nothing is developing (all clear!) and to ask the doctor a slew of questions, like what to use for the rash on my scalp, etc.

As for how I’m doing emotionally, that’s a complex answer. It still feels surreal that I have breast cancer and that this is my new reality. Now that I’m recognizing patterns following treatment, it makes me dread the next one more, knowing what’s to come. And I’ve seen things that make me worried for the second regimen (with Taxol). But each treatment, of course, brings me closer to being done. What else am I going to do? I have to get through this; I have no choice. It’s just frustrating that I’m getting all the side effects when so many people I know barely have any!

I’m still struggling with finding head coverings I like, which affects my mood. I got some slouchy beanies last week, but they too don’t look great. Samara says I look like a hipster who smokes weed. Which for the record, I’m not (says this Gen Xer)! I found a video that shows different headscarf styles and found two that might do. Of course the scarves I have aren’t the right size (too long, too big, etc), so I wasted too much time online trying to find suitable options. One problem with scarves is if I nap, I have to undo and redo all the work.

I also realized one thing this past week: Having breast cancer during COVID is its own punishment. If it wasn’t for the pandemic, I would still be cautious and take the proper precautions when my WBC levels are lowest. But because of COVID, I have to be even more careful. It’s not just about getting COVID (though of course that’s scary too, as someone who is immunocompromised and gets all the weird and lasting side effects of everything!). Remember, if my temperature gets above 100, I have to call them and likely go to the hospital due to the current drugs I’m on.

In normal times, for example, I’d have regular visitors. The socialization would be a good distraction and help pass the time.

Earlier this week, two long-time dear friends passed through Pittsburgh on their way back from Nashville — the trip I cancelled. Due to one attendee testing positive the morning we were going to meet up outside, we settled for a half an hour visit through my closed front door. Thankfully we’re all good lipreaders!

My in-laws are coming to see us, and my parents are coming for my third treatment. Whenever close family visits, we ask them to curtail any social activities at least a week prior and be extra careful about exposure. They also test the day of arrival.

For the most part, I’ve been sticking close to home. However, even the voracious reader that I am can’t read all day. Last Sunday, I did all the things to amuse myself, and then couldn’t take anymore. Boredom reared its ugly head. Thinking about the months of this in front of me, makes me depressed.

But this is just half the battle. The other is assuming I even feel up for socializing or venturing beyond my driveway.

Thankfully next week, if past experience is any indication, I’ll be feeling better and my WBC levels shouldn’t be at their lowest. So I’m hoping to go to two book club discussions (with my mask on, of course).

What it’s like to go through cancer and treatment.

A friend shared this by Caitlin Feeley and it’s spot on:

What’s it like to go through cancer treatment? It’s something like this:
one day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”
As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my husband – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY WIFE,” and the mountain lion punches your husband right in the face. Now your husband (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your husband in the face. And your husband is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead. Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “fuck this mountain, I never wanted to climb it in the first place.”

It’s hard to believe my second chemo treatment was a week ago. It feels like a lifetime since then. Every day is different, yet one thing has been the same: the nausea. Still trying to find relief. The other day I had no energy and needed three naps yet I was also super restless. Another day I was able to do a couple of errands (before my WBC gets too low). A lot of times I don’t feel like doing anything – that’s the hardest. Sleep also varies; one night I’ll crash right away by 9:30, while other nights it takes forever to fall asleep or I’m up in the middle of the night.

But if previous experience serves, eventually I’ll be on the upswing. At least I’m halfway through the A/C. Supposedly the nausea is better with the Taxol regimen.

I was supposed to leave today for Nashville, for a long-awaited (and rescheduled) reunion with my speaking deaf friends, many of whom I’ve known most of my life. It’s always a good opportunity for us to recharge our batteries and be with others who just get it. I know I did the right thing in canceling my trip. On top of not feeling up for it only days after my chemo treatment, my WBC levels will be at their lowest, making me high risk for getting sick. Add the COVID risk to that, and it’s just a supremely bad idea.

On the plus side, Samara is now coming home for her Fall mid-semester break!