Thank for checking out this entry. I have officially been dealing with cancer since March 2019. It has been long rollercoaster ride. (And I don't like roller coasters. OK. I do like Thunder Mountain Railroad at Disney, but is that really a roller coaster??)

I guess the long story is too long to tell, but here it is in short version: I turned yellow and incredibly itchy with jaundice while on a cruise. I went to Urgent Care in Grand Cayman Island and they said I had hepatitis, not A, B, or C. and I needed to get to a hospital. It was too late to leave the cruise, so I got off the cruise at Cozumel the next day, where the doctor at the hospital said I won't die that night, unless I get hit by a bus, so I should go home and to emergency room in Miami. I managed to get home the following day, and to the emergency room, where the attending resident told me after a CT scan "This is how most pancreatic cancer patients usually present". The following day the GI doctor said it was more likely to be bile duct cancer. He put a stent in my bile duct, did all kinds of biopsies which showed no cancer, and de-jaundiced me. 

The oncologist ordered a PET scan which would show any cancer anywhere. it came back with nothing "lighting up". That just made him more sure he was right, and it was bile duct cancer. The CT and PET scans did show some nodules in my lungs (not particularly active ones), which they were going to assume were metastases of the bile duct cancer. The biopsy came back that the nodules were lung cancer, not bile duct cancer. It's all adenocercinoma, but different somehow. The second opinion was pretty much the same as the first, but sent blood off for a fancy test that establishes probabilities of where or what the cancer is. It came back 95% likelihood of lung cancer, 5% chance of biliary cancer of some kind. We decided to treat the 95%, although the chemo would also work on the 5%, maybe. 

Nine months later, a new CT came back showing all kinds of crummy stuff: I had fluid in my abdomen, the lung cancer seemed to be worse, but did not cause the fluid build-up. That had to come from something nearer and dearer to my liver - in other words biliary. I went back to the first doctor, who now was in a practice I was ok going to. There is a "cancer marker" blood test, CA19-9, which I had done when i first got back to Miami. It was in the mid 4,000's. Normal is >35! But since I had pancreatitis (the only thing that I was experiencing symptoms of!) the oncologist said the number was skewed by the pancreatitis, and therefore unreliable. Thank G!d, the pancreatitis finally got better after about 8 months. 

We redid the CA19-9, which in March 2020 was about 5,000, and now, without pancreatitis, was something to pay attention to. My oncologist put me on a much more aggressive chemo, weekly, three weeks on, one week off, and we watched the CA19-9 as it decreased with every treatment. In August 2020, the CA19-9 was 777. That means that something must be working! Unfortunately, the chemo is a bitch. I run a fever every night starting two days after the infusion. I get chemo brain. If you don't know what it is, imagine your head in a fog and everything in slow motion, especially any movement you do. it's very confusing. Plus the chemo makes me extremely fatigued, so i have only enough energy to sit on the couch and mindlessly watch tv.

The absolutely worst part of the chemo is the shortness of breath and coughing. I can't stand up without huffing and puffing for the first minute after I stand. A minute may not sound like a long time, but when you are gasping for breath, it's an eternity, every time I stand up. Sometimes, I end up gasping for no "good" reason. My oxygenation is fine. This is not gasping for air because my lungs are not getting enough of it, this is gasping for air because my airways are enflamed and because it is a side effect of the chemo.

The fluid in my abdomen, called ascites, has to be drained regularly, in a procedure called paracentesis (look at all these new technical terms!). I am currently having it drained every 5 days. If it's not drained it continues to collect and becomes harder and harder to breathe. (Yes, this adds to the already problematic shortness of breath). It also becomes harder to eat or to drink, as with each day more fluid accumulates blocking normal organ function. The fluid is caused by the liver not being able to process it and get it into the kidneys. So it goes nowhere but into the abdominal cavity. The latest CT showed "possible new nodules" on the outside of my liver, which would be the cause of the ascites. The only "cure" for this fluid build up would be the very chemo which seems to have caused it. Medical tautology. On the other hand, the amount each time i have paracentesis has been decreasing. My first time, they took 6 liters of fluid out of me! Imagine walking around with 3 two-liter bottles of soda inside your abdomen!!! Now that I am having it done every 5 days, the amount has been steadily decreasing, although the discomfort hasn't decreased by much. I am averaging in recent weeks about 1.4 liters.  

There is a silver lining to the paracentesis. The people who perform this procedure are incredibly nice to me, and have become like friends with me. I guess seeing the same people every five days leads to some connection, but they are incredibly special. My chaplain encouraged me to be open to friendship with staff people, and in this case it really has made a huge difference. Strike up a conversation about anything if you can, and see where it goes! My physical therapist has also become a source of a different kind of support. I see doing physical therapy as an act of hope more than any of the other stuff I am doing. 

I was told in March that I had 9 months to a year to live. While I hate the chemo, I don't know that I am that much closer to the end of my nine months. I am grumpier, but don't seem to be that much sicker or near death. Who knows? My oncologist told me yesterday that the chemo will stop being effective at some point. My guess is he is pointing again at the 9 months to a year thing and my be warning me this chemo may stop working in 3 months. Or not. 

The chemo also took away my hair. I know, some of you are thinking "you're bald anyway". Resist that urge next time. Life without eyebrows, eyelashes, the little hairs in your ears that enable you to hear, most of your body hair, is not the same. It's not pretty, and not funny even for a bald guy. Most importantly, most of my beard has fallen out. Again, resist the temptation to laugh. i have had a beard on my face since I was 18. Losing it, not of my choice, is no laughing matter. I lost about 40 lbs when I first got sick. It has been very hard to gain any weight, and I remain at the lowest weight I have ever been. While I don't mind being skinny, it's not me, who i was,  and I do mind all the extra skin. 

The chemo also is causing edema in my feet and legs, and neuropathy in my feet. Again, not pretty. When I stand, and huff and puff, i also am standing on feet that don't feel anywhere near normal. They kind of feel like the minute before you get pins and needles - tingly, numbish, hard to know exactly where they are. 

I'll come back to post an update when there's something new to say. This is kind of hard to do.