Tag Archives: immunotherapy

The Final Chapter

I need to start by saying that I know I don’t update much anymore, but this warrants an update. You guys, it’s been 7 👏 YEARS 👏 since all this cancer nonsense started. Seven! Seven years since I decided to take the “Big C” from cancer and keep it with Christ. And I’m almost 6 years past my “expiration date” 😉

It’s so crazy to look back and see how this has all played out and since I had scans today I wanted to update you guys because you have been so amazing to us through all of this.

Annual scan selfie from today 😆

Today I drove to Philly with a heavy heart. And I had to go by myself because of all the Covid restrictions. Even though every year there’s a thought in my head that something could pop up, today I felt fairly sure something would. Last night in searching the Psalms, this excerpt struck me. Yes! Even if something crops up and I’m back to treatments, and procedures, and prognoses, I will still rejoice in my salvation!!

Everything went smoothly with my brain MRI to check on my brain tumor and my full body PET scan and so I drove home and waited for a call from my oncologist, assuring myself whatever it was, God was with us. Many of my friends and family members were encouraging me throughout the day and it meant the world to me!

I won’t make you wait, when my oncologist called he was pleased to say that not only did my scans look great but since I’ve had 5 years of clean scans now, I don’t have to go back for any more! Our conversation was short and sweet, but there was one little nugget that I wrote down because I never want to forget it…

He asked if I had any questions so I asked him, medically, what I’m supposed to call it when people ask, am I cancer free? In remission? His response, “I don’t think there’s really a good word or term for it, you’re kind of a trailblazer here. It’s not really supposed to work like this.” He went on to tell me I should consider myself cured. My oncologist used the word “cured”!! I couldn’t believe it. Of course, he advised I still remain diligent with my health and if anything is worrying me to call him, but I’m no longer advised to get yearly scans.

In my mind, the absolute best case scenario here would have been hearing “your scans look good, see ya next year”, so this was unfathomable. Reminds me of Ephesians 3:20 “‘Now to him who is able to do immeasurably more than all we ask or imagine”. Absolutely more than I could have asked or imagined.

I know so many people don’t get this news, and for that I do struggle with survivor’s guilt and I cannot give an answer. It’s a lot of complicated emotions, but I would say guilt is the biggest. I understand that it isn’t fair and I wish I could explain any of this, but I can’t.

It feels final. It feels done. It really feels over, after all this time. Below you’ll find a short recap through pictures of some of the highlights (low points….) of this journey. My thanks to all who have prayed for us, I know many of you have followed even though we’ve never met, there are no words for our gratitude!

Love and blessings to all of you!! ✌️❤️

A few months before being diagnosed
2 months post neck-dissection after 1st radiation treatment
Radiation hair loss
After 25 radiation treatments 😳
Port life
Accessing my port for immunotherapy
My brain tumor
Gamma knife radiation on brain tumor
Clinical trial round 2 – Keytruda
Current facial situation (transplant site and scar from neck dissection)
Just a few months ago ☺️

Oncology Fun!

Thanks to everyone who’s been asking how everything went yesterday, I really appreciate it! Things seem to be heading towards answers, well kind of. I saw my oncologist and based on all of the symptoms I’ve been having, (brain issues, headaches, vision changes, pressure in my head, loss of feeling in my feet, and a bladder that won’t fully empty) they are starting to think that the chemo itself may be “attacking”, for lack of a better term, parts of my nervous system.

This isn’t quite as alarming as it sounds, it just means I would need to be put on a low dose of steroids for as long as I’m getting the chemo, so quite possibly the rest of my life. The only way to know for sure if this is what’s causing all of my issues is by ruling out a few other things, such as spinal fluid issues or changes in my brain tumor. I’ll see a neurologist quite soon and have an MRI and MRA because there was an area of “interest” on my last MRI that may be another aneurysm or changes in my tumor. They also may need to do a spinal tap to check my spinal fluid for…whatever spinal taps check for.

I’m just taking it a step at a time, an appointment at a time. The good news was that neither my oncologist nor his fellow (resident?) thought that my symptoms were due to my brain tumor growing or changing, so that’s quite a relief! As odd as it sounds, I’d rather just keep that little turd in there and it be inactive than have to go in after it and all the junk that that entails.

I’ll also see an endocrinologist about my thyroid next week and hopefully get my MRA and MRI studies done then too.

Oh, and I’ve caught another cold.

Haha, what a life this is! It is certainly never boring, that’s for sure. For me, it’s so much easier when we have answers, even when the answers are hard. It’s particularly difficult for me when there are so many question marks and so many things up in the air. But I was told in the beginning of this by a very wise man that things like this either make you bitter or make you better. I’m choosing to go with better. With God’s help, this can be a time of spiritual growth, it doens’t just have to be a foggy mess of questions. No matter where I’m at in the physical part of this journey, I’m continuing each day to let God guide my steps, even when I cannot see at all in front of me.

Here’s my other source of comfort, my family. Here I’m getting some post-chemo cuddles from my boy ❤