Oncology. I could have gone easily 10 more years not knowing what this word meant. What it’s code for. What it really means. So far I’ve been saying: my situation, my thing, because of the (you know), but never calling it by its name. I have an oncological problem. Is that thing? Is that what I should be saying? I’m in the oncologist waiting room with everyone easily older than my mom. If it weren’t for the lump and scar on my neck maybe they would think I was here supporting her. But she was there supporting me because the appointment with the oncologist was mine. I’m the one with cancer.
Before you feel that sinking feeling, let me tell you, I’m lucky. I have been given the best medicine someone could possibly receive in this situation: hope (and chemo, lots of chemo). Ready for a timeline and specifics? Here goes.
Fall 2016- Spring 2018: Skin started itching randomly. It started off as a subtle inconvenience, but after being told I had bed bugs, to having peanut allergies, to the final diagnosis of eczema, I was ready to get a subscription membership to lotions and live with eczema. This itch was now persistent and kept me up all day, all night. From about 4am – 9am it would subside and I could get a few hours of sleep in before being woken up by itching. The scratching causing obvious blemishes and gauges into my skin. This was no way to live.
April 2018: While preparing to host RAW: San Diego I was getting dressed buttoning up my collared shirt to the top button as per usual. I noticed that my neck was much larger on one side, a very weird place for a lump. I scheduled an appointment with my doctor (Primary Care Physician). She had me go for a chest X-ray and come back the next day for results.
I still remember sitting there on the cold patient table with the crumbly paper (leaning awkwardly because they don’t even try to make those things comfortable with some sort of back to lean onto). It was one of the most vivid memories I will hold for the rest of my life. She said the words “mass”, “oncologist”, and “I’m sorry”. I saw my mom’s eyes start to water, and there it was again “I’m sorry”. What was she sorry for, I didn’t understand what it was she was telling me. Then it hit me, this could be cancerous. Could be, as in: it was, but she couldn’t legally say without further testing. But she knew. I heard it in her voice. I saw it in my mom’s eyes (my mom is a nurse, she knew what she was hearing). One of the medical assistants came in and got a referral to an oncologist quicker than I’ve ever gotten a referral for anything ever. This was serious.
May 2018: Testing. This was a month of testing, testing, testing. MRI, with contrast, without contrast, neck biopsy, bone marrow biopsy, PET CT scan, regular CT scans, labs, blood draws. So many tests. Each one telling us more of the story of what’s inside my body. What type of cancer, how far along, subtypes etc.. By the end of the month we had our verdict: Classic Hodgkin’s Lymphoma Stage IIIA. (I found out real quick what the heck a lymph node is and what they do for our body. I’ll let you wikipedia that as needed.)
My oncologist is really hip and has a mobile App called FollowMyHealth that I have access to all my test results, clinical summaries, etc. So I can read the report, but many times not sure what I’m reading, but I think it says I have about 13cm (5 inches) of cancerous activity in my mediastinum (chest area). That’s pretty huge. The stages of cancer refer to the spread to different sections of your body. So above shoulders is one area, chest is another area, abdomen and lower is another area, and in your bone marrow is the 4th. So I was classified stage three because there was cancer in my neck (obvi) and my chest, but also a few lymph nodes in my abdomen. I was cleared from stage four because the bone marrow was negative of cancer. This diagnosis was some great news as the prescription of hope was then able to be administered.
Hodgkin’s Lymphoma has a very specific, treatable regimen of chemotherapy drugs that have been proven with high percentage rates to put patients back into remission. (Non-hodgkin’s lymphoma is different, and has multiple subtypes that would have to be analyzed further before being able to know how to fight) With the positive reassurance, and a set plan of 6 doses of ABVD chemotherapy I prepared to fight cancer for the next 6 months. BTW, I still had the itch that was keeping me up at night. I’d come to find out they call this the Hodgkin’s itch, and I was told once I started chemo it would go away. You have never seen someone so EXCITED to start chemo than me.)
June 2018: Chemo starts. (Itch goes away, yay!) There are myriad chemotherapy drugs and cycles and rhythms for various types of cancers and body types. The ABVD regimen was to be administered via IV drip at the oncologist’s office for about 6 hours on one day. Then I would go home to rest for two weeks and come back for the other half of the dose. A full dose would be 2 days a month, one every other week. So this would put me ending the full 6 doses just before the holiday season.
November 30, 2018: My final dose. Had I gotten use to it? No. You never get used to chemo. It is like the worst hangover you will ever have. My bounce back from feeling crappy for about 4 days straight after receiving it started to become quicker. I would pick myself up quicker with the strength of family and close friends’ visits, random texts, prayers. It all works. Trust me, I felt the power of all of it. And after this dose, I would need that just one last time!
December 2018: PET CT Scan to check and see how the chemo worked. Results show a very small blip that the doctors are unsure if that is cancer or an example of why they say things are only 99% effective. Their reaction, let’s cut it open and see.
January 2019: I’m technically in remission, pending scheduling this next biopsy. Every day further away from chemo.
February 2019: Testing Part 2. Surgeon goes into the area above my shoulder (lower neck) (opposite side from the first lump) that the scan blipped. He samples the lymph node and the results are negative for cancer. But he tells me “when I was in there, there was a lymph node below that I couldn’t get to because it was close to a main artery, it looked suspicious. I would recommend a needle biopsy.” My oncologist sees results on paper as negative, “you’re in remission, let’s get into the final step of radiation”. And this is where I encourage everyone to be their own best health advocate. I said, look doc, the surgeon saw something, I feel like I should get the needle biopsy (as much as I dreaded the idea of getting invasively poked AGAIN, I knew I needed to be sure, for the long term). Needle biopsy results: Positive. I now had Refractory Lymphoma.
March 2019: There’s a plan for that. I just want to say thank you to all the souls that have fought and died in the name of cancer and have allowed progress, research and technology to get where it’s at. And the medical professionals who have dedicated years to learning and pioneering these tools we have available in 2018/19/and beyond. Because of these heroes I was given another dose of hope. This time the regimen would be called ICE. Heavier? Yes. Side effects? Same and stronger. Rhythm? 4 days straight of chemo for 8 hours. But at least I’d get 3 weeks off this time. And only needed to do this twice.
April 2019: Now. Waiting time.
This post will most likely be updated like a live feed as I find things out myself, so yes there will be updates and changes ad hoc. My creative thoughts are still compiling as I go through this. There is a journal of entries that I hope to share with you one day, but I would like to keep them to myself right now as they give me strength being with me. (I’m an introvert at heart, so I get energy from my own thoughts and feelings.) I hope you can respect that and when I’m ready to share, this will be the place.
In the meantime here is one entry which describes how I view my diagnosis and this process, and my hope for the future:
From 4/30/18: “Even winning boxers need to take the boxing gloves off in between rounds. Head to their corner and drink the water, get the medicine put on, patches taped up, pep talk, still courageous, take a breather and then get right back in gloves on and continue on to win.”
We’re all dying, I’m just trying a little harder to live.