šŸ”” One year today!!

It’s been a while since I posted, but today marks one year since I completed my last chemo and rang the bell!

I’ve had CT scans, bloodwork and exams every three months for the past year and have to continue on this 3 month cycle until this time next year.

My tests last week all came back great and in the clear!

Thank you to everyone who has been asking how it’s been going and keeping tabs on me. It means a lot ā¤ļø

Test results

I had testing on Thursday and got the results to my portal last night. My CA125 level was one of the tests. It’s essentially a marker for ā€œfemale cancersā€ (ovarian, endometrial, etc).

Anything above 35 is an indicator of cancer presence. When I was first diagnosed I was right about at 35. The last test was 5. And this test came back a 3!!!!! šŸ™šŸ¼šŸ˜

Sorry, these little things excite me and I wanted to share!!! ā˜ŗļø

Update

Just wanted to post a little update.

I’m feeling soooo much better, except a lot of body soreness still (but I’m also old, so…that’s not necessarily attributed to any type of recuperation)

My hair is growing back in like CRAZY. But it’s growing in with a lot of gray hair I didn’t have before, which they said is to be expected from chemo. Sometimes it stays like that, and sometimes it goes back to normal after a few inches, so I guess we shall see šŸ˜…

I have my first 3-month follow up at the end of this month where they will also be checking my cancer antigen levels. Hoping for the best! šŸ¤žšŸ¼

Test results

I wanted to wait until I had all of my results before officially posting this here. And I just got my final blood tests back a couple days ago.

My catscan showed NO signs of cancer, and I’m officially in complete remission!!

I will now be in surveillance, which means that every three months for two years, I have to go back for more catscans, pelvic exams and blood tests. After two years, it changes to every six months.

My blood tests showed my white blood count completely back to normal and all of my other levels completely normal (except that I’m still anemic, but I’ll take it)

In the words of the Grateful Dead, ā€œWhat a long, strange trip it’s beenā€ā€¦

Looking back… May 20, 2023, this all started with a stomach ache. Crazy to think.

23 long weeks later….I’ve gone from an overnight ER visit, to an ambulance to the cancer center, 12 days in the hospital, 2 days in ICU, pelvic exams, catscans, echocardiograms, EKGs, the discovery of a 20cm ovarian tumor, an emergency complete hysterectomy surgery, a pulmonary embolism they found at the last minute (with an insanely memorable near death experience), a surgery to remove the PE, a swollen heart, catheters galore, a stage IIIa Endometrial Cancer diagnosis, a chest port surgery (that hit a nerve), 6 very long, draining, tiring and painful rounds of chemotherapy over 18 weeks, complete hair loss, leg and back pain, a burning stapled abdomen, peripheral neuropathy, body weakness, countless arm and hand sticks and needles to the chest, low white blood cell count, emotional overload full of constant tears…

But we made it!!!!!!

I am so thankful and so grateful to everyone who has helped me through this. BUT I want to especially say thank you to my parents/brothers…. Robert, Hayden and Robbie (and Robert’s entire family)… my amazing NY girl-squad, Alex, and my other insanely wonderful friends and family who have checked up on me, helped me, and/or sent well-wishes throughout this entire daunting adventure. You guys all seriously have no idea how much it has meant to me. There are no words to even express it.

I’ll try not to get too detailed in my thank yous, I didn’t exactly win an Academy Award. (But I’m saving that for next year).

The rollercoaster isn’t over yet. I have years left of constant visits, potential for reoccurrences šŸ¤žšŸ¼ and a LOT of bills coming my way. But I leave you with this… collected over 23 weeks (there were many more I lost… and to think the initial 12 days in the hospital was just one wristband!).

A reminder to myself what I just went through, and a hopeful bit of encouragement to anyone else currently going through it, or having to go through it in the future. ā¤ļø We made it.ā¤ļø

Ew

That’s right, this topic is just ā€œewā€.

I have my followup CT scan today. I’m currently forcing down 32 ounces of Barium liquid.

All this technology and they couldn’t make this taste better? I think the creator took barium, sidewalk chalk and battery acid, mixed it all up, then threw a skittle in at the end.

I think I’m supposed to have it finished by now, but I’m writing this post instead. Ugh.

They should really put this stuff on Chopped. See what those chefs can do with this crap in their mystery basket.

Final treatment!

I know I haven’t updated… i got to ring the bell last week!!!! šŸ›Žļø Definitely pretty emotional and a feeling so completely indescribable unless you’ve been through it yourself.

So thankful for my parents for randomly flying down to be there with us! They are awesome!!!!! I seriously have the best parents in the world. They couldn’t even come into the infusion center the whole time and had to alternate turns because I was only allowed one person at a time. So much of the time was spent with them in the lobby.

When it came time to ring the bell, they let them pop in and watch, which was awesome.

Officially graduated!!!!

What’s Next

I’m trying not to ā€œcelebrateā€ too early, because anything can happen. But I look forward to updating with good news!!!

On October 20th, I get re-scanned to see how everything worked. Then on October 30th, I have an appointment with my oncologist to go over results and find out if I’m in remission. šŸ¤žšŸ¼

Getting through this hopeful last week of post-chemo pain/nausea. It’s been pretty much the same as usual. All over pain, but especially leg bone pain. And I had a pretty bad bout of feeling nauseous over the weekend in the car. Robert had to keep telling me, ā€œwe’re almost home, we’re almost home, we’re almost homeā€.

I’ve been so wrapped up in chemo appointments, followup appointments, quarantining myself from big crowds, staying away from sick people, dealing with pain and nausea, my new job, kids, dogs, the whole nine yards. I can’t wait to just breathe.

We are planning a camping trip next weekend to finally get to do something. And by camping I mean glamping in an RV pretty close to home, but hey, I’ll take what I can get right now, it’s something!! And it’s so very needed!

Looking forward to some positive updates soon!!!

One week!!!

My last treatment is ONE WEEK FROM TODAY!!! šŸ””

I’m reflecting so much on this whole ā€œexperienceā€. And while I’m definitely not out of the woods yet, I’m grateful to not have it as bad as others going through a similar process at this point.

I’ve had a LOT of pain, I’m bald, my scalp hurts, I have no eyelashes, I’ve had nausea on and off, weakness and dizzyness, bumpy things all over my face, dry skin… and the emotions… oh are they ever there. Not a day goes by that I don’t cry at least once. Even happy things have me in a puddle.

But that all being said… I can walk. I am still working full time. I go into the office a couple times a week. I can’t move as much as I would like, but I’m still able to do it. I still cook dinners and clean (with help from my favorite lil family who thinks I should sit down). I have an appetite for the most part. I have not vomited one time (is that TMI? I don’t know where to draw the line). I’m not sick (I mean, besides the whole cancer thing), I laugh a lot, and my support system is insanely amazing. I have soooo many people in my life, even strangers, that reach out to me wanting to help or check in. And I can’t even stress how needed and appreciated that is. Because this is such a lonely thing. And I’m a stubborn person who doesn’t really take help, even if it really may be needed.

Suggestions?

This morning I was talking to Robert about how this whole time of tribulation has made me feel so horrible for the people going through it alone. Or the people who have had it so much worse than me (I pray that the powers that be that are in charge of jinxes, superstitions and Bills super bowls are not rubbing their palms together and grinning ear to ear)

We were brainstorming about what I could do for others going through it when this is all over and I’m back to myself (yeah, I said when, not if)

He had a great suggestion of volunteering to sit with people in chemotherapy that want someone around and don’t have anyone. So many of them are there alone, especially older people. I just can’t imagine not having someone there with me each time. The littlest things like a conversation. Or fixing of a pillow. Or covering of feet when they get uncovered. Such little things that really add up.

A couple days ago, I started getting into crafting meaningless figurines and jewelry/keychains with polymer clay that you bake. Something for me to do that is stress relieving, relaxing and doesn’t require much effort or coordination. He suggested maybe I could make some of them and let them choose one. Kind of like a good luck charm. Or just a token in a way.

I mean, when I say meaningless… last night I made a chicken. And some poop.

I probably wouldn’t offer them the poop though…. Maybe. 😁

I meannnnn. It kind of represents Cancer as a whole, right?!

If anyone has any other ideas, let me know!!! šŸ˜Šā¤ļø

Hopeful homestretch

I had to re-read my last post to see where I left off. Sorry about the vent-fest. There are definitely really bad days in all of this. And really good days. And honestly, I’ve been so incredibly lucky that my good days generally outweigh my bad days. But they’re there. And they suck. A lot. And unfortunately it’s those days that I feel like I need an outlet, even though there were great days all around it.

I think Robert ends up seeing a lot that most people don’t – every single up and down and every bad day, he’s on the front lines. He does everything he can to make the bad days good and I’m eternally grateful to feel so taken care of in a time where people typically feel the most alone.

The other day I ended up buying a new car (to SAVE money. The payment on my car was insane). We got into a discussion with the sales guy about why I was reducing monthly payments. The conversation turned into Robert going on to this random man about how I’m such an amazingly strong woman and I don’t even know it. And that’s when I cried in a car dealership. šŸ˜…

After we left, I asked what he meant by all that. Because I certainly don’t feel strong when I’m crying as much as I have. And he said, ā€œyou’re the strongest woman I know. Because you have your bad days, but you pick back up the next day and start fresh every time. You don’t let yourself stay like that. You turn it around. That’s why you’re strong.ā€

(And I needed to hear that more than you know)

Since then…

I’ve had a lot of extra body pain lately. Complete stiffness, back pain, leg pain and a really tender, sore scalp.

I still have to slowly stand up because I’ll get a shooting burning pain through my abdomen where my hysterectomy was if I go too fast. One in every five times standing up results in me keeling over in pain and falling back into position.

I officially lost my eyelashes over the weekend. I held on to them for so long. I think the reason it hits me so hard isn’t vanity, but reality. People don’t have hair on their heads for all sorts of reasons. Some have just chosen that look for themselves (which means it probably looks good on them). And even when it’s not a choice, you can put a wig on and the general public doesn’t really know the difference unless they’re five inches from your face staring at your hairline.

But you lose your lashes…. well…now you’re a cancer patient. It’s like I was in a boat filling with water, and I’ve been able to keep afloat using buckets and frantically removing the water. But I can’t keep up now, and the boat is officially sinking. šŸ›¶

You look at my face and you just know. It’s a telltale sign, and I think it’s an inevitable one that I’ve been avoiding. But here we are, and I’m going to make the best of it, because there’s no use being upset over something I can’t control (as much as I want to control it). At least the hair from my wig doesn’t get stuck in my lashes now. There are always silver linings.

Almost Done

Less than two weeks until my final chemo in my treatment plan.

October 6th is probably going to be the biggest milestone in my life and I don’t think I’ve looked this forward to a crappy day since the last Bills divisional playoff game.

9 days and counting…

Because Mondays weren’t bad enough

Five down!! One to go.

Unfortunately I don’t have a whole lot of positivity to share. I mean, less than three weeks until my hopefully last treatment, and that’s exciting. And my white blood cell count didn’t go down any more with this last blood test, which means I (so far) avoid having to do a patch treatment that adds more pain because it uses your bone marrow to produce white blood cells.

So there is some good stuff.

But I’m currently having the most challenging time I’ve had through all of this.

Today is a huge struggle.

I always go into the Monday after chemo knowing it’s going to be hard. There’s going to be pain, nausea, weakness and for lack of better terms… a surplus of emotions.

I try my best to mentally prepare myself, but last night my preparation involved car trouble (sputtering and stalling) and praying we made it to at least autozone to see what was wrong. Super scary knowing if we broke down somewhere, my legs don’t even work right to walk anywhere. Little things you don’t even normally think about.

We did make it to the auto place. And according to the codes, I have a cylinder misfiring. I called the dealership this morning and they said they’d get me in at their soonest available time… October 16th. Or I can drop it off and they ā€œmightā€ be able to give me a rental car for which they’ll cover up to $30 a day when it costs more like $60 a day. Sigh. šŸ˜ž

I hate cars. And I hate car dealerships and especially the warranty salespeople whose job it is to see how far they can screw you so they can put a few more bucks in their pocket.

Anyway.

My legs are especially weak today, and in a lot of pain, more than they have been, which is expected (for it to build on itself). I can hardly walk, but my mind tells me I have SO much to do. The kitchen needs cleaning. Kids have to get up. Lunches need made. All before my workday even starts.

In the midst of waking up kids who were supposed to already be up by yelling up the stairs because I can’t walk up them, the dog is in my bathroom pooping all over the floor.

So my chemo-nauseous self is on the bathroom floor on my hands and knees cleaning up soft poop and bleaching the bathroom rug and gagging.

Desperately hoping this day/week turns around. I’m losing strength for all of this quickly. šŸ˜”

One. More. Cycle. šŸ¤žšŸ¼

An update!

I haven’t had too much time (and patience) to update.

The pain and body aches are definitely starting to set in. All the way to the bones. I have another chemo treatment on Friday. Second to last (hopefully)!!

Frustration is also setting in more. The more I see hospital bills and the fiscal result of cancer within the healthcare system. It just seems fraudulent.

I mentioned before about the simple basic wig I picked out through the ONLY place that accepts my insurance… A place called Wigs N More in Latrobe, PA.

They charged my insurance over $8000 for it. I still don’t have possession of the wig because I sent it back over 6 weeks ago to be adjusted.

Before they got their money, this company acted completely helpful, responsive and empathetic. They offered me a phone number to text any time I wanted with any questions or needs. And I used it once or twice. And they were so nice about things. Up until they got paid.

Now I’ve texted the number two days in a row asking for an update with no response. So I called today, and the woman on the phone said ā€œyou must not be texting the right number, she checks that and responds to things like 1000 times a dayā€.

I told her I know it’s the right number because I’m responding to the last message that was sent from it. She gave a big heavy sigh and said ā€œlet me go check with herā€. She comes back and says ā€œyes she got your messages, but she doesn’t have any update. The company she sent it to hasn’t given her oneā€

That, my friends, is where I lost my shit (sorry mom, I’ll put a quarter in the jar).

Running a Business 101… telling someone there is no update IS AN UPDATE. Dont ignore people. Answer them if they ask you something. Even if there’s nothing new you can say. Tell them that. It’s not like I’m asking for an update after two days. It’s been SIX WEEKS after they told me it would take three.

The rest of the convo, the lady was being really rude, acting like I’m rude for even wanting a response. She was talking to customers while I was talking and kept trying to get me off the phone.

This place is the only place my insurance allows me to get a wig from in the entire country. Seems weird. I have zero choice in the matter if I want it covered. And they know that. So they have no reason to try to earn my business.

The company specializes in wigs and also mastectomy products. In other words, they’re making money off of people with cancer and then treating them like crap. I think that’s the part that irks me the most. I can handle myself, but many cancer patients are elderly and I imagine that’s who they’re used to taking advantage of.

If I could, I’d be cancelling my order. But I already trimmed the lace on the wig LIKE THEY INSTRUCTED. Which makes it not returnable.

Cough *scam* cough

A nice vent post because all this stuff seems to be ripping away my positivity….. And making me swear in front of my mom.

That is all for now. I’m off to open a wig company. I’ve heard they make great money for nothing.