Cancer Blog? Here goes…

Here it is. My chemo schemo. My fog log. My infusion confusion. My chemical vapor white paper. OKAY OKAY don’t leave, I’m done.

So, here’s the thing. We can all agree group text messages can be annoying (ok yeah, they just are). And Facebook…well, you’re forced to see stuff on your timeline that you don’t always care about. Or you miss important things if you didn’t log on in a particular window…

I’ve been getting so many texts, emails, calls, Facebook messages, comments, Instagram messages, etc. With every single message, I have felt so incredibly happy, loved, cared for, and downright honored to call you all my friends and family… even the strangers. Every single message has filled my cup a little more 🥰

But that lands me here. I want to keep people updated in a passive way – where you can get the update if you want it.

Not only is this a great way for me to look back at my own journey and share it with others, but it’s also a solution for the fact I have a hard time remembering to update everyone individually in my personal life, so I’m hoping this can be a good way for me to not only remember but give all the details and not miss anything or forget who already heard what.

We can call it a result of the “chemo brain” as they refer to it, but let’s be real, I’m scatterbrained au naturale.

So today will be a super long post because I’m going to give background I wouldn’t normally – the whole chaotic story up until now for those that don’t know it.

Up at the top you can subscribe and get an email each time I post an update (the others will be much shorter!). And feel free to share the blog. It’s public and really for anyone to read that wants to.

I’m going to start with how I ended up here. If you already know the story, I won’t bore you. You can skip to Todays News!

How The Heck Did I Get Here?

I’ll try to keep this brief (haha yeah right). The week of May 14th, my abdomen was in a lot of pain. I have a history of diverticulitis, and it felt just like it. I called a virtual doctor to get an antibiotic prescription and put myself on a liquid diet (no, not vodka). After a few days, nothing was changing and the pain was EXCRUCIATING!

Saturday, May 20th, I went to the dreaded ER. When I got in, they gave me a CT. They saw something “odd” and called in for an ultrasound tech, who confirmed I had a 22cm/ 8.5” tumor that appeared to be attached to my ovary. To put that in perspective, a basketball’s diameter is only one inch larger 🏀

Waiting on lab results and getting situated took forever. We were super sleepy, drained, and ready to go home and I couldn’t.

They transported me by ambulance to the MD Anderson Cancer Center in downtown Jacksonville where I was to be admitted. They wouldn’t even allow me to go home first.

My parents immediately jumped in their car and drove straight through from NY to Florida (because I have the most amazing parents in the world).

Once admitted, the gynecological oncologist came in to see me, and said I needed surgery but he couldn’t do it for two days. So I stayed in the hospital being monitored with pain management for the next two days.

“It’s not a Toooma!” (But yes it is) — The Removal Surgery

On Tuesday 5/23, they opened me up (a massive incision) to get the toooma tumor out and remove anything else that seemed suspicious. As it turns out, I have a lot of suspicion in my gut.

Billy Mays, here, we’re gonna throw in an entire hysterectomy!

So it all went. The uterus, fallopian tubes, ovaries and cervix (the surgeon, of course, asked permission beforehand for which parts he could remove if they seemed needed, so it wasn’t a huge surprise). They did a “quick test” of my tumor while I was opened up, but it would take a few days to get the full test results. The initial test was benign, which at the time was a huge relief. 🙄

He also told me my tumor had twisted, which was why I was in so much pain. He said it was so rare for a tumor that size to twist, and had it not done that, we wouldn’t have caught it, probably until it was too late. So I guess that’s lucky?

Post-Surgery ICU

After surgery, I wasn’t feeling very well. I was short of breath, really low blood pressure and much higher than normal resting heart rate. Getting up to the bathroom was even impossible. I would be breathless and feel like passing out cartoon style. They ended up having to insert a catheter (while I was fully awake, that was….a new experience)

They were doing all sorts of tests, trying to figure it all out. On Thursday, they said I could go home and just take it easy. They said go try to walk a loop in the hall and see how you feel.

I got probably five feet outside the door before stopping and requesting a chair. The most upsetting part? I REALLY WANT TO GO HOME!! The little devil on my shoulder is saying, “just push through and pretend, it’s time to go home and binge more Suits ” and the Angel is like “bruh, something is wrong” (I don’t know why she called me bruh, take it up with her)

The Angel won, luckily. Because within hours after that, my organs started failing and I was going into shock. I was laying in my hospital bed flat in a pool of sweat (I won’t get into it here, but I will say the “near death experience” and “out of body experience” is a very real thing). The doctors and nurses were rushing labs and different scans to figure out the problem. My labs came back and were off the charts. Not to be morbid, but it was later implied that based on my labs, I should have died. They sent me for yet another test/scan.

On my way getting wheeled down to the lab, another nurse stopped the nurse transporting me and calmly but not so calmly said, “she has a pulmonary embolism. Forget that scan, we need to get her to ICU” So off I went in a hurry. And I suddenly knew what it felt like to be on Grey’s Anatomy. I just hope I’m in a season with Izzie and Denny.

In ICU they immediately put me on blood thinners to break up the pulmonary embolism (for anyone unsure – a PE is a life threatening blood clot in your lungs). They said we can just wait it out and see if the meds fix it – about 12 hours – or go into surgery and do a catheter removal of the clot. Before we could even make the decision, another doctor looked at my most recent blood work and my organ failure and said “no, we are doing the surgery NOW”

And so they did, and pulled out an enormous PE. I have pictures, but I’ll spare you on here (i will show you individually if you want!). One nurse said she has been in the ICU for many years, and the size of my PE was in the top 5 she has seen. Now, I’m not sure how I should feel about that. Probably scared and appalled. But I am very competitive. So….. HECK YEAH TOP 5!!!! 🏅

I got back to my room and everyone said the color was back on me and I looked like a completely different person. I could breathe, my blood pressure normalized, my heart rate came down a bit, and while still a little winded from the PE, I could walk around.

They monitored me a couple days and kept me on a blood thinner drip. Finally, 12 days after my initial ER visit, I was released, feeling good as new.

Back Home And All Done – So I Thought

Fast forward a few days to 6/5, I get my actual pathology test results. Cancer. I got the results to my patient portal before hearing from the doctor, so it was a rough wait. I called the office and they said the doctor won’t have answers for you until after they meet with the “tumor panel”, which is a group of him and other oncologists that all go over results and come up with the best game plan for each patient. Frustrating, yes, but also kind of comforting knowing that a whole group of specialized doctors are going over my case and finding the best solution.  So I had to wait a few more days for answers.

I was diagnosed with Endometrial Cancer that had spread to the ovaries (which he explained, does not make it Ovarian cancer. It’s still endometrial/uterine cancer that spread). He gives me the news that I need 6 rounds of chemo (to start, they may need more). He said “this is the kind of chemo that you’ll likely lose all of your hair”, and of course my eyes turned to Niagara Falls. We asked what the outlook is if I don’t do chemo. He said “the cancer I just removed will grow back within 6 months”. Sooo, that sealed the case and I need to get a port and start chemo asap.

DAMN THIS “STOMACH ACHE!”. That’s all this was supposed to be… two weeks later I’m scheduling chemotherapy.

Other random things…

6/14 I had a genetic testing appointment where they’ll be scanning my entire DNA for cancer markers, since I’m a “young 39”. TBD on those results.

Chemo Port Placement

On Friday 6/16, I had a port placement appointment. For anyone that isn’t familiar, this is a minor surgical procedure where they open up a little tiny part of your chest near your neck and place a port that connects to your vein. This makes for a consistent and easily-accessed place for them to infuse the chemo drugs.

I got to the appointment and they did their whole rigamarole. Paid them $1700 out of pocket because health care is ridiculous, changed into a gown, signed consent paperwork, listened to the speeches, met all the doctors and nurses, got an IV placed in my arm, blood pressure, hooked up to a heart monitor – all to find out that I wasn’t supposed to eat that morning and nobody ever told me, or even confirmed I hadn’t until after I was completely ready for surgery. So I had to pack up and go home… all because I ate breakfast. I now have to completely rethink my entire life mantra of, “a lil bagel with cream cheese never hurt nobody”

A few days later, on 6/19, I went to get the port in again (on an empty stomach). The man checking me in tried to charge me another $1700, to which I politely and elegantly laughed in his face, because, kind sir, you are out of your skull. (I did not end up having to pay it again)

The procedure was okay, obviously isn’t fun having needles jammed in your chest and then cut open and something stuffed under your skin, but it is what it is. And the sedation was quite divine.

It’s been a few days and it’s still really sore, amplified by the fact today was my first chemo infusion. So that finally brings us to today! Phew.

Today’s News

Today, 6/23/23, was my first chemo infusion. I oddly felt so prepared – mainly because, like I said earlier, I have amazing friends and family. I’ll get to that again after this, let me get into today.

In all, the first chemo infusion was not as bad as I thought. My appointment started at 8 am, and I talked to the nurse a bit about my chronic PVCs and my concern that my heart is already improperly beating – will this make it worse? I have no idea and neither do they. So I was a bit nervous, because they didn’t schedule another echo before chemo to see if my heart swelling from the PE went down – instead I need to wait two months.

Anyway, they set me up with fluids and pre-meds, which are a cocktail of steroids, Benadryl and a couple different nausea medications. Because it’s the first time, they did each drug one by one instead of all together – in case there was a reaction, they knew which drug caused it.

Then came the first chemo drug for a 3 hour drip. Then the second chemo drug for a one hour drip – for a grand total of 6.5 hours.

They were very nice at the clinic, and everything was fairly comfortable. They provided drinks, warm blankets, a tv, snacks, and lunch to the patients. I mean, in ways, it kinda felt like I was at a spa session. You know, except for the whole getting poisoned thing.  Maybe a spa session I got on Groupon.

I feel fine right now, but that’s to be expected. They say the effects will come around Sunday. That can include extreme fatigue, body aches/soreness all around, peripheral neuropathy (chemo induced damage of the nerves in my fingers and toes that makes them tingle like they’re asleep), nausea, and vomiting. BUT, most likely will just be sleepyness if I stay on top of my nausea meds.

So until then… that’s how the cookie crumbles?

WAIT, one more saptastic thing…

Not to be morbid again, but I would rather thank people along the way than wait until it’s all over, because you just never know.

So, a very special thanks to everyone that has touched on this in any way. My parents coming down at the drop of a dime and taking care of me, being in the hospital with me every single day, my mom being my badass advocate in the hospital (“SHE HAS BEEN WAITING HOURS FOR WATER!”)

Thank you for the countless gifts I have received from so many people and I appreciate it all so so so much. And the sheer number of people checking in on me and ensuring me “You’ve got this” – Because of you all, the strength I am going into this journey with was more than I knew I had.

I love reading every single comment and message. You have no idea how much it means to someone going through a life-changing event to consistently hear from people – especially while trying to balance a ton of emotions.

Some that I’ve lost touch with over the years, others that I talk to every day. No matter who it is, it keeps me going – and I don’t always have time or am in the right mind to respond appropriately and show that appreciation. So, I wanted to make sure you all knew! (Sorry, I mean ya’ll. The south is going to exile me)

Thank you to my awesome boss and coworkers, who have been so incredibly understanding and picking up extra slack while I’m dealing with all of this (it will get more normal from here without all these pre-appointments, I promise!)

Thank you to my girl-tribe – Val, Jenna, Lindsey, Tara & Ang – for talking to me every single day, checking in on me, sending sweet comforting gifts, and always messaging me motivational thoughts and support. You girls are the best friends I could ever ask for!!

Thank you to my amazing boyfriend, Robert, who has been there for every appointment, gone out of his way to make me smile and laugh, been my second ears, my shoulder to cry on, my doctor question asker, my pillow fluffer, my bagel runner, my umbrella-in-the-rain holder, my notetaker, my sock putter onner, my helper upper, my car door opener, my water filler, my hand holder, my driver, my purse carrier, my food deliverer, my dog letter outer, my absolute angel in all of this – delicately and quietly preparing for the worst and outwardly and vocally hoping for the best. I love you.

This is sounding like a yearbook shoutout. I’m going to end this before I start assigning everyone superlatives.