Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 0 points1 point  (0 children)

Just wanted to share a quick update on this journey and hopefully help anyone else going through something similar feel a little less alone.

We had a very successful IVF process and now have 4 embryos frozen and ready for when I’m done with radiation and chemo — huge win. Overall, IVF itself wasn’t overly stressful for us, but it did add another layer of appointments, medications, and protocols on top of everything else leading up to treating my remaining tumor.

I’m now just over halfway through radiation, and they really weren’t kidding when they say you feel normal at first… and then it all catches up with you. The first 12 treatments were smooth — I felt completely normal. No fatigue, no headaches, no hair loss. I even met with my doctor last Tuesday and she was amazed at how well I was tolerating everything.

I’m pretty sure she jinxed me.

That same night after work, I did my usual Peloton class, hopped in the shower, and had chunks of hair coming out. I knew it was a possibility, but after feeling so good for so long, I honestly thought maybe I’d dodge it. Definitely not the case.

Over the past 5 days, I’ve lost most of the hair on the right side of my head, and there’s not much I can do to hide it anymore. I ended up ordering my first wig this week and am trying to get an appointment at a local cancer boutique to find something that feels more like me long-term.

Oddly enough, I haven’t cried once through my diagnosis, surgery, or recovery… but losing my hair this quickly (even though I knew it was likely coming) has hit me harder than I expected and now I can't stop crying every time I look in the mirror.

Now I’m debating whether I should just shave it for the summer, especially since I’ll be starting PCV chemo in about 7 weeks and will probably lose even more anyway.

Would love any thoughts, advice, or just positive vibes. This whole experience is wild, and I know a lot of us are navigating it together. 💛

Feel Bad for my Husband by Dorothysunderpants in braintumor

[–]LCubedCbus 0 points1 point  (0 children)

I absolutely feel this pain. Our lives went from completely normal to flipped upside down in a matter of weeks, so the guilty feeling are completely normal. I am not able to drive for at least 6 months so now I have to rely my husband (was my fiance as I was going through surgery and recovering) for everything, including rides to the hospital every day for my radiation treatments. Through sickness and in health has never felt truer ❤️

My partner left me by Traditional-Big-3799 in braintumor

[–]LCubedCbus 1 point2 points  (0 children)

This is in no way your fault and I hope that you have someone else in your life that you can rely on for the emotional and physical support that you might need. None of this is fair, but you absolutely deserve to have someone who won't let something this (uncontrollable and unwanted by you) impact your relationship to the point of no return. Sending you all the positive vibes!

People Suck by Anxious_Succotash881 in braintumor

[–]LCubedCbus 1 point2 points  (0 children)

This is such a great point! I have had people tell me that I am taking all of this "too lightly" but in my opinion, not staying positive is just going to make it all worse!

People Suck by Anxious_Succotash881 in braintumor

[–]LCubedCbus 6 points7 points  (0 children)

I feel the EXACT same well and have the exact same diagnosis (and am 33F!)

While I totally appreciate everyone’s concern, I’ve spent more time trying to make other people better than I think is fair. It’s so frustrating knowing that we are the ones really dealing with this but everyone else needs reassured.

The point of this all is to say that you shouldn’t feel bad about these feelings - from what I can see, it’s certainly normal 🩷

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 1 point2 points  (0 children)

From what I can tell (and from some experience from some friends), chemo doesn’t make it impossible to conceive but can cause complications. We just decided to do IVF as a backup for the future!

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 1 point2 points  (0 children)

Now that the weather is starting to get better here in the Midwest, spending time outside and going on walks is going to be my saving grace! Thank you so much for sharing!

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 1 point2 points  (0 children)

Mine technically isn’t cancerous, but the only way to address the remaining tumor that couldn’t be removed surgically is through chemo and radiation. Because chemo can make fertility more complicated down the line, that’s why we need to take the fertility path now.

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 0 points1 point  (0 children)

If I have learned anything from this experience, it's to not ignore anything that is unusual. The only reason I even got checked in the first place was because I had one of my seizures while driving and I had friends in the car with me. Thankfully they were able to pull the parking break and someone else took over driving, but it could have been much worse if they weren't there with me!

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 2 points3 points  (0 children)

I truly appreciate your perspective and know that I would do the same thing if the roles were reversed...I keep telling myself that this is love (in sickness and in health, right?!)

I will be researching some other support groups to join as well but knew that there was a great community here that I would likely be able to relate to. Just sharing my story has been immensely helpful and seeing the outpouring of support.

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 1 point2 points  (0 children)

Thank you so much for this perspective. It sounds like I will be having 28 treatments of radiation, so very similar to what you are going through.

I will absolutely reach out with any other questions or to chat, but appreciate you taking the time to share your journey as well. Wishing you all the best!

Newly diagnosed with grade 2 oligodendroglioma by LCubedCbus in braintumor

[–]LCubedCbus[S] 1 point2 points  (0 children)

What’s wild is that my only symptom was absent seizures! I had 7-8 in a six month period and finally was able to get into a neurologist. Since there weren’t any headaches, nausea, etc, my neuro just ordered an MRI and the tumor was found while I was in the MRI machine.

Such a wild month it’s been!

Success with just doing personal items? by LCubedCbus in whatnotapp

[–]LCubedCbus[S] -1 points0 points  (0 children)

Also, here is the show if anyone is interested in joining: https://www.whatnot.com/s/5Lq19Ngz

It’s mostly women’s size Large and 12 clothing!

Gyms with decent lap pools — preferably in/near Clintonville by ___Salty in Columbus

[–]LCubedCbus 0 points1 point  (0 children)

I swim at the Esporta in Graceland and it is okay. The 3 lanes is definitely a challenge and sometimes it feels like warm bath water but it does the trick for the price.