Sometime really bad, other times are survivable. I can't really go outside when the weather is good and do things I want. I've pretty much had to give control of my life over to other people which sucks. I've lost 20 pounds of muscle mass and am weak. I see the pulminologist on Tuesday. His assistant told me if anything was blaring on the CT, he would have called me. Since he didn't I can assume that Brochiectasis is the ailment I have. I'll know more Tuesday afternoon. I am so sick of being tethered to this oxygen hose, I hate it.
Well, the first thing out of his mouth was "I don't have good news for you", "It's pretty bad". We then went over the CT and it seems I have a fist sized tumor blocking half my lung on the right side. Instantly the reasons for the pain was identified, From the main mass there are several "fingers" stretching out to the rib wall. When those tear loose, it's like I've broken some ribs only the pain doesn't last months. I do have the left side that looks totally normal on the CT....that's a real good thing. I'm in a holding pattern for a few days so he can arrange a brochioscopy at the hospital and get some biopsies. Then 2-10 days for those results. My only 2 coices for the next level were: 1* do nothing 2* a risky brochioscopy and biopsy I told him that wasn't really a choice, I have to know what this is. It's not looking too good my old friend. I have decided to fight like hell though. It's time to shift into major ass kicking mode.
Oh what the fuck!? Why did his assistant tell you if anything was serious he would have called? Having you walk into the office to hear this.. You're still a bad ass my friend. I know you got this.
Well I just checked my chart page at the hospital (My past and present medical records). The endoscopy space is reserved for the 19th. Not sure of the time. My doctor will be doing the procedure and likes first thing in the morning. First thing in the morning is my kind of guy. I've studied what is involved and am cool with it even the risks. This is going to be a trip for sure.
I'm really sorry you're dealing with all of this but I know you're going to kick this things ass. I've read about people naming their tumor (usually someone they hate). You gotta keep us updated if you're feeling. up to it. Hows your Mom doing with Covid?
Mom went through Covid like a champ. Was able to get her right onto a prescription of Paxlovid. It worked great and she was only down for 3 days. I got all settled with the time I go in for the biopsies. I show up at 6:45am on the 19th and get the camera shoved down me at 7:45. The important date on my calendar is the 29th. That's when the rest of my life will be layed out. My follow up appointment after all the biopsies are determined. There's some anxiety about it, but I'm ready. Working real hard on keeping a strong mental attitude.
The Brochoscopy went well. Just after the CT office visit with my pulminologist, my brochiecstasis stopped bothering me. I didn't question it. It was great not hacking up all that green/grey mucus all the time. My appetite came back and I gained a few pounds. I thought maybe it was the prednisone and amox working wonders. Well, that wasn't it. The brochoscopy revealed what was up. My right lung no longer get any air at all. The tumor grew so fast it completely cut off any air entering. What I'm feeling as relief, is my left lung taking over the whole job of oxygenating blood. The pictures taken were brutal. That tumor is massive. My doctor will be refering me to another specialist after the 29th. That s when the pathology will be back on the biopsies. He took 7 biopsies and got into the tumor as far as he could. It's almost a given that I will be seeing a oncologist next month. Where it goes from there, I don't know. I'm sure it will involve surgery and lots of pain. The whole lung has to come out. #2 (Left lung entrance) and #5 (Right lung entrance) should look the same.
You have answers now.. Not exactly the news you wanted but you always overcame everything thrown at you in life.
So far. The doctor said I'd be coughing for awhile after the endoscopy. He was right. Spent all day yesterday coughing up blood and who knows what else. Today, no blood. I'll probably see the pathology before my pulminologist too. It all gets posted on my 'mychart' page as it happens. You are right, knowing what's going on is so much better than sitting around waiting and wondering. I look back on this whole process and can't help wondering how much quicker things would have progressed had the pandemic not really screwed up the health care system as it did. It's been a year to get this far towards a prognosis and we're not there yet.
I just got the pathology report. Bad news, worse news than I expected. I expected non small cell lung cancer, but didn't expect that it was a very metastatic kind. I may have cancer throughout my body. Now it is going to be about getting with the oncologist and testing to see if there is any other areas of concern before addressing the lung issues. Time is a big thing here. This type of lung tumor has a doubling rate of 25-217 days which explains how it got so bad so fast.
Ugh. That news is always gut-wrenching when one first hears it. I've been baby-sitting a cousin's house (with air-conditioning), so I've been out of touch with the internet for a while.
I wondered why you were absent. AC is definitely a friend. We're supposed to hit 108-115 today and for the rest of the week. Yikes. Add to that the smoke from the fire in California and it equals being captive indoors for a week. And yes, that kind of news was a gut-punch. Every day is as surreal as it it gets. I got my doctor referral appointment moved up to today. Then I will know where the next step will be.
officially: Stage 4 lung cancer, inoperable. Can only be treated with chemo and radiation. I go for a PET scan as soon as it gets scheduled. The good? No surgery and trial therapies are well advanced and effective. So......here we go! I'm not looking forward to being bald as a billiard ball.
Thanks guys. So far the pain is manageable. With the advances in chemo, radiation and immune system therapies, I even have a chance at beating this. All is dependent on what shows up in the PET scan.
I go in for the PET and CT scans on Friday at 8:30am. I have anxiety about the imaging but even more a wish to know the facts. My thinking goes all over the place if I don't know what reality is. It's going to be a long week between Friday and next Thursday when I meet with the oncologist. I think I'll engage in a run through of the Mass Effect trilogy to keep my mind occupied.
I'm kinda anxious about the readings/results, but am able to drag myself back into today. Bad stuff, this low carb diet I have to do for 48 hours prior to the scans. I love carbs and didn't know how much a part of my diet they are until I couldn't have any. I can eat all the meat I want, but no coffee, spuds, sweet items, fruit, breads or all the things I really like. Oh well, it's only until tomorrow. I plan on hitting the do-nut shop afterwards I hope that the irradiated glucose won't make me sick. Nothing worse than wasting do-nuts!
Fuck dude, that all sounds horrendous. I’m in awe that you’re keeping your spirits up! How’d your follow-up go?
So far a strong mental attitude is the hard part but gives the most comfort. It's easier when taken one day at a time. I got my do-nuts! My sister had 2 donuts waiting for me when I got done with the PET scans. So far all follow ups have been not in my favor. New doctor next week, then on to a real treatment plan.
The PET scan showed tumor infiltration into chest cavity and fluid on the right lung. I get another biopsy! Yay. I also get to spend another chunk of bucks on a brain MRI. The PET will not show abnormalities in the brain so MRI it is. Depending on the biopsy, I will be seeing a surgeon if it's negative or chemo and radiation if it is positive. Either way. I have an average 2 years left on the clock. Update, the biopsy already is in the bag. The hospital called this morning and wanted me to get right in for blood work and a guided thoracentesis. They took about a litre of fluid out of my right lung for biopsy. While I was in the waiting room, another call came in from the cancer center to schedule my brain MRI. This is to eliminate a possibility of a tumor spread to my noodle. My head aches 24/7 and dizziness is constantly a problem. I am impressed to finally have a doctor/oncologist that gets it that time is of the essence.
Good news on the brain MRI.....my max out-of-pocket has been reached ($6750) and now I just pay co-insurance of 10%. So instead of the $1500 I was expecting to need to come up with, my part is only $315 for a $4500 procedure.. Still, I didn't think I'd be spending my retirement savings in this manner.
