It's been 2 years since I was diagnosed with Stage 4 Follicular Lymphoma.
In February of this year I became a little obsessive with palpating (feeling) near my clavicle and neck where my lymph node (initially) was massive and what led me to seeing a doctor. My oncologist had told me once I was done with chemo to not make myself crazy feeling all over looking for lymph nodes. I did really well with that for the first year and a half. Then for whatever reason I started feeling that area numerous times a day. It felt like a bubble of sorts was superficially under my skin. I tried convincing myself it was nothing, but it lingered in my head that 'What if...' I got ahold of my oncologist, hesitantly. What if it was nothing and it was all in my head? He said immediately 'Let's do a scan and have a black and white answer immediately. There's no need for you to worry and we'll either celebrate or make a Plan B.' The PET scan was done. I swear I have PTSD from the notification on my phone from my online chart: You have a new test result to view. 😬😯😵💫
Thank you, God. The scan looked better than my last one right after chemo was done. I had had a few straggler nodes in my abdomen and those were all clear on this scan!!
The only sequelae I still deal with is being immunocompromised. I've been done with chemo for 19 months. I was consistently getting sinus infections which ended up finally as pneumonia this spring. I had battled with insurance for 6 months to get approved for IVIG and pushing for it paid off. I've gotten 4 doses now and haven't had a sinus infection since I started it.
I still see oncology every 3 months. He wants to continue that schedule until I'm 2 years out from feeling 'normal' post chemo. I didn't feel back to my normal physical self for 6 months after my last dose.
I didn't opt to have a port for chemo either. Hind sight, I would have gotten one but no one could've convinced me at the time. My veins are still trash now.
I hope above all, in my writing, people can be reassured there is hope after a cancer diagnosis. Follicular lymphoma isn't curable but it's treatable.
I'm 51 and living my best life. I continue to work at my dream job doing Critical Care Transport of Neonatal and Pediatric patients. I love life. So much. Please, if anyone reading ever has questions or just wants to reach out, do it.
Blessings to you.
Robyn
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