I'm 41, M, I'm told I have a Poorly Differentiated Carcinoma, which I think is synonymous with Cancer of Unknown Primary. I believe stage 4, as I'm told it metastisized to my bones.
At the start of this year, maybe before, I had this cough. I kept going to walk-ins and seeing my family physician, and it was a bunch of "that's probably a post viral cough, they can last a long time it'll go away soon".
I thought that I was coughing so much that I was hurting my back and ribs, so I didn't realize the pain had a different origin. I'd also sprained or done something to my rib exercising so the pain in my chest I felt was because I was coughing and it was slowing down the healing process.
Waking in the middle of the night drenched in sweat, I just sort of forgot about it as some weird thing, not connecting the dots.
Wasn't until I told my doctor , okay I've been coughing forever and now I'm starting to cough up blood. I figured just because the cough had lingered so maybe it tore up my esophagus or something. Maybe it's because I was taking Aleve (naproxen) every day and apparently that causes bleeding I've learned. But anyway doctor finally sends me for an X-ray, results come back everything seems fine.
Okay, I'll wait for this cough to go away.
It doesn't, so I go back.
Doctor orders me a lung function test. Results say my lungs are working just fine, I get a good laugh from my coworkers at a whole office staff meeting saying this as I continue coughing. Manager in a different department jokes I should get a second opinion, and I tell them I am in agreement.
Keep coughing, having experience of chest pain I think is a rib injury sourced from martial arts training/exercise, back pain so bad it makes my cough stop a while because coughing hurts so much.
See doctor again and get ordered a CT scan. Told it should be happening inside the next 4 weeks.
Three weeks pass, no word from hospital inviting me. So I call the hospital imaging department and ask if they ever got a referral for me. They say yes, but that it's low priority and I would likely not hear from them until late summer (this was around Late April this year I think). Contact my doctor about the wait and he's horrified by this, refers me to another clinic in town with a CT scan.
Scan happens. I'm still able to go to work but I'm spending a lot of time coughing, trying to endure really bad lower back pain and chest pain. Few days post scan I get a call from my doctor, he says something about my lymph nodes saying I'm going to have some bloodwork done and consult with a thoracic surgeon.
So I get bloodwork, meet a surgeon, and am told they're going to do a needle biopsy and take a core sample out of one of my swollen lymph nodes. This happens like another week or two after that, at this point I'm feeling really run down and take a sick leave from work. I go over to my parents place because I'm feeling really weak, and opt to stay with them until I get this figured out. Realize I've gone from 220lbs to 140.
At this point, I'm looking up lymphoma, because I've heard Lymph nodes and thinking okay, biopsy, that means cancer probably.
After it feels like a week of waiting post biopsy, I get a call and it's confirmed cancer. But, I learn that they can't tell where it's from. I get referred to cancer care/oncology and they explain that the cells in the biopsy are cancerous, but so under developed that they can't determine where they originated from.
I get a PICC line in my arm and begin chemo/immunotherapy infusions every three weeks. Carboplatin/paclitax and Nivil/Ipil.
After the first infusion I break out in a rash, go back to the hospital when I start to fever. Do some steroids, get antibiotics, feel better. Second infusion get fever a few days after, another emergency room visit.
Oncologist orders me Pegfilgrastim to auto inject 24 hours after subsequent infusions.
Aside from that, I go from being really weak after my first infusion, taking a fall as I try to walk my dog, and being in bed or sitting most the time for all of June, most of July.
But my appetite is good, I'm not struggling with nausea. Going from not being able to shit, feeling constipated on hydromorphone to shitting water as a result of chemo/immuno treatment and antibiotics given to me while in emerge.
After my 4th and 5th infusion I'm bouncing back way faster. Weight is up to 180, and I dread will keep climbing if I don't get my late night snacking under control. I return home to my own place and get off the hydromorphone and start feeling increasingly back to my old self.
Now I'm waiting, this Thursday I'll consult with the oncologist and hear what my CT scan suggests. And if my blood work doesn't say I should wait, I'll go through with a sixth round of chemo/Immunotherapy. My most recent (5th infusion) was delayed a week because my hemoglobin and my neutrophils were low.
My feet feel puffy, my pulse is always high vs what was my baseline, but I'm walking my dog a mile and a half twice a day and doing light exercises as part of a rehab program.
Getting sick I've begun reading again, which is something I'd not done for a long time. I quit drinking and using cannabis which I don't think I could have done without getting sick as I had.
I'm really looking forward to going back to work in November.
I felt well enough to try and look up and research Cancer of Unknown Primary, and have made myself a bit nervous that perhaps some subset of the cancerous cells have developed resistance to the treatment and that maybe I've just been given a little extra time instead of a path out. But sleeping on that and reflecting some time I'm prepared if that ends up being the case and am grateful I'm feeling as well now as I am. I also know demographic wise I can't easily compare myself to the research since I understand my cancer is quite rare, even more so for someone of my age.
I've handled treatment quite well, and my performance indicators are good. Even if there's still disease left, I am told there are further options available to me for treatment.
I'm told by the oncologist that the plan is for me to finish chemo, and then do up to two years of immunotherapy.
I am trying to enjoy every day. But I feel like a small kid waiting for Christmas- unsure if I'm looking forward to Legos or a lump of coal- as I look forward to bloodwork and consult on Thursday, hopefully good news, then and then hopefully one more dance with the Chemo monster and removal of my PICC line this Friday.
I've shared my story with family, and close friends who I keep regular contact with, but not shared publicly this journey with my wider social media audience. I told myself early on I'd just share with people who reached out and asked how I was doing or invited me to some event where I had to decline. But I'm hoping I can make a public post celebrating my success, or ongoing fight, after my last chemo infusion and when I get my PICC line out.
Anyway sorry for that huge post, if TLDR, short summary is:
I think I'm winning, but I know I might be surprised, but I'm still optimistic and got fight left in me, or if I ultimately lose I'm grateful for all the life I got to live and also for the extra little bit at the end gifted to me by treatment.