Its been a long while since I've put anything up on here, so I figured I'd give a bit of an update.
Today is 9 weeks to the day since I had my "big" surgery.
In terms of diagnosis the news has come back better than expected. The oncology folks are fairly convinced that I have/had Cystic Mesothelioma with mesothelial inclusion cysts deposited around my peritoneum. This is a super rare diagnosis, has only been reported ~125 times and only 17 times in men...so there ain't exactly a ton of robust science to rely on in the world of cystic mesotheliomas. You may have heard about mesotheliomas from the legal ads on TV as they are typically caused by asbestos exposure. As far as anyone can tell cystic mesotheliomas don't have that link, although the fact that I lived in an unfinished attic for 2 years in college may provide some confounding information
The Good:
If you get a mesothelioma in your chest, its gonna kill you, probably pretty quickly.
If you get a mesothelioma in your pelvis, its probably not gonna kill you.
They cut a 20cm tumor out and scraped a bunch of other stuff off my guts, so essentially I am disease free.
The Bad:
The tumor has a 50% chance of coming back.
They used to call this "Benign Mesothelioma" then they realized that it can kill you, and that name could be somewhat misleading, I was more reassured by the original nomenclature.
The Unknown:
With things that occur this infrequently, its tough to generate good predictive information. I am thrilled to have a mildly threatening disease, however as I am only the 18th dude to get this disease, the science that says "this is nothing to worry about" is pretty weak
The plan for now is to wait a few months and then get a follow-up CT scan, followed by periodic scans every so often to make sure nothing is growing back. It appears that if the mesothelioma fails to kill me, the thyroid cancer I'll get from the radiation from multiple CT scans should finish things off nicely.
Do you have Cancer?
Strangely this is a tough question to answer. For years this tumor was put into a category of "things that are a burden but are not dangerous." As people seemed to do alright with this tumor there was no reason to label it as a malignancy. Over time they found that about 5% of the people with this actually did pretty poorly, so they took another look at thing are realized that it was probably accurate or at least helpful for treatment purposes to consider this a cancer.
I've come to truly despise the term Cancer. The terror, anxiety, and needless histrionics associated with that word are truly unbelievable.
If you have a mole cut off your skin at your doctors office on your lunch break, you could have cancer, as could the 18 year kid who has a brain tumor the size of an orange. The term cancer conveys a host of negative emotions without providing any useful information.
Through this process I've found people that embrace the notion of being a cancer survivor, for every one of those there are two to three who recoil at the sound of the word. For all the emotion that goes into "cancer" there is a surprising apathy towards the real common players like COPD and congestive heart failure, which I see 15 times a day, and are much more likely to do you in than any ol' cancer.
I had a tumor that was trying to fill my abdomen with muck, I have coin flips odds of having it again, if it comes back I have a small chance of things not going as well as they did this time...call it what you want.
If I had to characterize the past 9 weeks, I think "strange" would be the ideal world.
I would strongly advise against letting anyone cut you open if it can be avoided. People keep asking "Was it painful?" There was a significant amount of hassle, but thanks in part to the wonders of modern drugs, looking back I can only think of a few moments of real "pain."
Things I wish someone had told me before the surgery:
-Your bladder may not work...for 10 days...you may need to have a catheter placed...four times. There may be a feeling worse in life than having a full bladder and being unable to go. Let me know if you find what that may be.
-As you remember from medical school, when you have a catheter in place, and your urine gets infected, and you get fevers...that is not ideal.
-When you take narcotics you will get pretty crazy. You will become neurotic and wipe your face so frequently with a washcloth that your skin starts to peel. Also there are not really bugs in your hospital bed, so please stop asking everyone to check for you.
-When you stop taking the pain meds, because you've never taken them before, you'll get a good 72 hour period of narcotic withdrawals....this will be much worse than any pain or discomfort associated with the surgery...you will think you are going to die...you won't.
So there were a few bumps in the road, but no major complications and after the first two weeks things have been fairly smooth.
I started back part-time at the 4 week mark, and was at best half speed, which can be interesting in the Emergency Department.
At 8 weeks I started full-time in the ICU which has been pretty tough. I don't have a ton of pain, as long as I'm not lifting things or trying to get up from a chair, but the fatigue an lack of pep in my step is fairly significant.
I'm not sure if the surgeons tied me up too tight but there is a clear change in my normal gait. My position of preference is now leaning forward at the waist and leaning to the right with a little limp. I look like a crazy old man. I can stand up straight and walk normally but not without feeling some "pull" way back in my abdomen, and it seems like things are tugging and sliding that would be better left alone. As I said above, nothing too painful...just really strange. Again don't let anyone muck with your organs if at all possible.
I wrote something the day I returned to work, which I'll put on here later.
Thank you to everyone for you support and unceasing kindness through all of this. Its nice to know that even a crusty chump like me can have such an amazing network of friends and family.
