Yours truly, apparently.
*You may skip this post if you'd rather have my version of puppies and kittens, AKA graduation and vacation posts, instead of posts involving breast cancer. You're allowed. No hard feelings. I get it! Read on if you'd like. You're always welcome to stick around or to skip out.*
*Also, this one is lengthy. Grab a snack.*
So I finished my five years of Tamoxifen on Groundhog Day this year. I had a checkup later that month. My blood work and my physical exam were fine. Sometime after that, I felt a lump in what is left of my right side, near my armpit. I started running on the treadmill in April and know that sometimes your lymph nodes can get outta whack when you do hard exercise. Well, running is hard for me- I don't hit a good stride for what feels like forever, and the longest I've ever run continuously is about a mile and a half. Since I have two friends and had an uncle who have all done marathons, which I am NOT aspiring to by any means, a mile and a half feels puny. Still, I suppose that's from Camp Lambec to Peggy Gray Candies, so there's that. Go me!
Anyway, the running in addition to the good exam and consistently "perfect" blood draw numbers for the last five years had me keeping an eye on the lump. I told my oncologist at my May appointment. She felt it and said it warranted an ultrasound and, if needed, an ultrasound biopsy.
I don't think there are a lot of words I more personally dread and despise than "biopsy." At this point my veins shrivel up immediately and try to hide. They don't even come out at "Olly olly oxen free!" They know better.
So the ultrasound tech is wonderful, supportive, a cancer survivor herself and a tremendous cheerleader for me. She's joined the same team of ladies who won my heart the first time I was in there for a mammogram. These ladies are some of the same team who got me through the initial biopsy, where I passed out, and then caught me when I passed out again after she finished my follow up mammogram. These ladies are angels, I'm telling you. They hugged me and told me they'd be praying for me. And that maybe it was scar tissue. Don't jump straight to the worst.
Bless them all. I'm so fond of them. Definitely following their callings. Thank you, ladies.
So the ultrasound results-viewing doc comes in to confirm that "it's suspicious looking and will need biopsied." Unfortunately, they don't do that in the same appointment. So I'm scheduled and my sweet ultrasound friend informs me that I will have a tremendous doctor and she will also be part of that team and they'll see me in 10 days.
Ten days later, on Thing Three's birthday, our firstborn takes me to the appointment and I warn them that I'm a fainting risk. They coo over me and inform me that they won't let me pass out, tut tut. I smile and silently rue, "we'll see about that." They took seven samples, saying it'd be more than enough to see what's going on in there, left their "we were here" clip for future imaging, and lo and behold I stayed awake the entire time. I'm telling you- angels. Walked out of there and everything! Amazing. I'd never have believed it.
So we go on vacation.
And I get a call saying the biopsy tested positive.
*insert choice words and/or tears of rage/frustration here*
(I sure did.)
A telehealth call with my oncologist ensues. She says the next steps will be a brain MRI, a heart echo, and a PET scan to see if anything has spread. Then a surgery consult followed by surgery to get that area cleaned up. Then hormone therapy will be after that, but a consult with a radiation oncologist will help determine what else needs to happen- do my ovaries need to come out? What kind of hormone therapy will it be? Apparently you can only do Tamoxifen if you still have ovaries and you take something different if you don't. There are some other questions as well, but I think my brain might have fritzed at that point. I did retain that I can't have radiation again on that side because you can only do that once. Live and learn.
From vacation, I'm calling to set up the brain MRI, the heart echo, and the PET scan. Being on vacation actually worked in my favor as the PET scan van is only at my hospital on Fridays and they were already full until we could get back. Same with the surgical consult- that surgeon was on vacation and wouldn't be back until July. Perfect timing!
This past Monday morning, I head in for my brain MRI, which is first without and then with contrast. I choose to listen to oldies, which I clarify means 50's and 60's and not the 80's, which makes the nurse laugh. I try to not hum along and keep track of how many songs so I know when they'll pull me back out to add the contrast. I keep my eyes closed in these and that helps me not feel claustrophobic. But you don't go the whole way in for brain ones, so that also helps. The needle doesn't feel like it goes great, but it gets the job done, leaving a small bruise. Those ladies are cheerful and I'm in and out of there. I left from a different door and decided to walk around the hospital to my car. At some point the sidewalk runs out, so I kick off my shoes and roam through the grass barefoot, still wearing my hospital bracelet. Anyone watching from the windows probably thought I'd escaped. So far, so good.
Monday afternoon is the heart echo. These are fun. No needles involved so I get to chill out on the bed as she glides her wand around while her other hand takes measurements and screen shots of my heart doing its thing. I like to watch the colors on the screen.
I get a call from my oncologist's office later in the week that both of those scans were clear and perfect. Brain and heart are great. Part of the reason behind the heart scan, I bet, is that I was on Herceptin for a year, which is not a chemo drug but is a hormone therapy drug which has the potential to do heart damage. My doc had me have heart echos during that year to make sure it wasn't affecting my heart adversely, so I wasn't expecting bad news this time either. Always nice to receive good news, though! Yippie!
Yesterday was the PET scan, first thing. That means that Thursday was a high protein, low/no carb/sugar diet, as much water as I could drink, no caffeine, no strenuous exercise, and so forth. You're also allowed to keep drinking water on the day of, which is so nice as it means your brain doesn't feel like it's the size of a raisin and you can actually think. So I go in sipping from my water bottle with nice, juicy veins. I thought. Silly me. As my Aunt Kay would say, "fool."
The PET scan van has two reclinable seats in one section and the machine is in the opposite end with a work station in between; today there's a male and female tech. I'm installed in my chair next to a tiny, smiling old woman in the next one, and I show the female tech my bruise from the MRI on Monday. She laughs and tells me that I'm still young and my veins tend to stay where they are; apparently once you get up there farther things tend to scoot around more. I guess we've all been warned, folks. Good times ahead. So she has me loose and relaxed and I swear to you I was not stressed about this test! I'd had one before, I was so excited to cross this off my list to get more answers, etc. I was good!
You can imagine my consternation when that needle wouldn't go in smoothly. She tried pulling it back out some, then a little more. I lamented that times like this are when I miss my port. She laughed and said since they're not nurses that they're not allowed to access ports anyway. Sweet Jiminy Christmas. Ports are God's gift. I ask if I can put my feet up on her stool and inform her that things are getting sparkly. She says sure, so my feet go up...
And I go out. Again, incredibly vivid dreaming and I wake up to... boxes up high on a shelf and two faces peering down at me that I can't immediately place and then... oh yeah, here we are. Stupid veins. Needles. Ugh.
Female tech: "Um, have you ever seized before?"
Me: *sigh*
"Oh yes, it's happened before."
Male tech: "That wasn't a seizure. It was a vasovagal syncope..."
Me: "Yeah. I had the EEG and all that and everything was fine."
Him: "Especially if it only happens in circumstances like this."
Her to him: "Will you try to access her veins?"
Him: "Sure."
He's wonderful as well, shows me a picture of his dog, we laugh about rescue animals, he gets it in and tapes it in place even though it only takes a few moments for the blood draw and the dye to go in, gets me a cold washcloth and watches me like a hawk. I do go on to vomit, sorry if that's TMI, but it's mostly water as I hadn't eaten since before 8 the night before, I don't think.
I don't remember if she tried in the back of my hand like I'd suggested before or after I passed out. I think before. He got it in the back of my hand. So now I have two pinholes inside my left elbow and two in the back of my left hand, because everything is to be done on my left, non-cancer side. Blood pressure cuffs, all that jazz. I try to be good about it.
The radioactive dye they inject works its way all through you- in my case I sat for about 50 minutes for it to complete its rounds- and then you get popped into a machine where you glide back and forth and the machine takes pictures for a few minutes. It makes me think of a kids' ride at an amusement park. You sliiiiiiiide in, stop, slide a little farther, slide back out fast, stop, stay put, sliiiiiide. Had to remind myself to hold still and not giggle. She said since I'm smallish that it would take about 12 minutes. If you read online it can take 20-40. She said they had a new camera. Hooray for progress. I wish there was a radioactive dye I could absorb through a patch or something, sheesh. Come on, people. Let's stop killing each other with weapons and start inventing better medical procedures, ideally stick-free!
So I do great during the test, I'm released and escorted back to the waiting room where I park my bum and sit like a sad sack whilst eyeing up the trash can on the opposite side of the room while I wait for my hubby to make it back. He'd been told I'd be about an hour and a half so he got some errands done instead of wasting away in the waiting room. Apparently the radiology lobby is a cell phone dead zone because my texts to him were going nowhere. He found me after a few minutes and I leaned on him as I made it out of there on my own two feet, though I confess to feeling like I'd been slapped around by ocean waves. You know how you still feel like you're being hit right after you get out? I didn't want to turn my head quickly and relied more on my peripheral vision. They had assured me that I'd feel normal with that dye, but holy cow, what is IN that stuff?
On the drive home, which is only a few minutes, he made a quick stop into our local donut shop and I vomited again, haha. Such a lovely morning. It's all good- we keep fast food bags (and everything else) in the car so I was prepared. He got me home and I popped back into bed for a much needed nap and start over.
The rest of the day was uneventful and we celebrated with pizza for dinner. Now I'm not so excited about my oncologist wanting to schedule me for a PET scan annually. Yeesh. Oh well. Good to go for another year, I hope! Supposedly results take about 24 hours so my oncologist's office should be letting me know early next week how that all worked out. Then all of those images from the three tests will head to the surgeon for the consult Monday after next. She will have all the intel she needs to decide how to tackle this next part.
I'm optimistic about the surgery part- never my favorite thing, obviously, but I can't wait to get this lump out before anything gets ideas about taking up permanent residence. If the PET scan reveals that it is just a lymph node who decided to hang onto some previous bad stuff, then supposedly after surgery I'd once again be disease-free (yay!) and would just do the hormone therapy treatment, however much that entails. Maybe ovaries come out, maybe it's infusions, I have no idea. Not stressing over any of that yet. If it has spread from the lymph node, I feel like my blood draw numbers would have revealed something to that effect and we'd have had a heads up. Either way, my oncologist said, "there will be treatment, but it will be nothing like it was before. It will be nowhere near as difficult."
I want it out. And I don't want it to affect my range of motion, which is probably why she's sending me to a surgical expert who can clean it out really well. I can feel it not just when I touch it, but when I'm in certain positions or when something like a vertical underwire on a swimsuit puts pressure on it, things like that. I want it gone and I want to recover and move on. I'm stronger this time around than I was for the initial diagnosis six years ago. We started walking a few miles most days during covid and then this year I started running, so I'm definitely in better and more intentional shape than I was. That's going to count in my favor during recovery, I think. I love my team. They always have my back and they treat me like someone they'd enjoy going out to breakfast with. I'm in great hands. My family and my tribe know what's going on and have my back. Will I miss my ovaries? Nope. My main concern is that I'm right handed and if they have to take much more muscle out of that side I don't want it to affect anything. "I am not left-handed," as they say in the Princess Bride. Me neither, buddy. My lesser concern is that I don't want too many lymph nodes messed with or removed as I don't want to run the risk of acquiring lymphedema. I got stuff to do!
Along with that, I'm mostly aggravated. With a lot of life, there's something to blame. And I know blame isn't helpful, but it IS nice to be able to point to something as a cause. "That guy was drunk and therefore caused that accident." With this, at least before I have all the imaging and so forth, the best guess is that a lymph node held onto cells it should have let go. How they made it through chemo and surgery when I had clean margins and then radiation is beyond me. But then my brain whispers, "does that mean it's back instead of never being really gone?" And I tell my brain to shut it. And I remind it about my "perfect" numbers. And it settles. And life goes on in this amazing world with my incredible overlapping circles of friends and family. I know whose I am and who's got me. I am unbelievably blessed.
I will keep you posted. In the meantime, we will play the waiting game once again, checking things off the list as they happen, celebrating over good news and making a plan to deal with any less than desirable news. The plan is to enjoy the summer! That goes for you, too: do what you love!
