Before I go into what's been going on, I wanted to start with a little bit of shilling but from great places. There are now two Go Fund Me accounts that have been set up to help me out. I'm..speechless at how much people want to help. I feel weird sharing them because I'm not the type of person who asks for money, and in truth the question of covering the medical bills will come at a much later date. To BIDMC's credit, thanks to how insurance works, they are not worried about co-pays and what not for now, they just want to get me well. I'm going to attack all this at the end. That said, the treatment causes unexpected expenses: ordering in more because I'm the primary cook, parking at the hospital, drugs for the nausea and to sooth the nerve pain, all that stuff. It's also allowed Kathleen to finish up this semester of nursing school without having to worry about taking extra shifts, so the generosity has come in handy. So, I share because not only has it helped, but it's helped my attitude as I've, frankly, realized how many people I've touched in my life. Just to note, I understand money can be tight for folks and it doesn't say anything about you as a person if you don't donate. If you're my friend, you're my friend and you don't have to give money to prove it. That said, people have asked how they can help and these are perhaps the most direct way.
The first one was set up by my good friend, fraternity brother, and member of my wedding party Adam Pohl. This one goes straight to me, as it is set up to go to my bank account. While there you can see all who has donated big and small, and it's an amazing cross section of people. If this is how you'd prefer to go, head to this one.
The second one I just found out about this week. My amazing co-worker and former Service Center mate Liz Hersee started this one with the intent of purchasing a Blue Apron subscription and some Uber cards to help me in transport back and forth to the hospital, especially on days where the weather may not be so good or I just don't feel like climbing in the car and dealing with Boston traffic. Thanks to her and my...amazing...co-workers their goal has already been exceeded, but it'll be up for a few days longer. I have to say, this one hit me when I first saw the number. I'm not exactly an extrovert at work. I don't hang around with folks after and don't do a lot of team things, but I like to think I help where I can and try to be there to answer any question anyone has. To see how many co-workers have stepped up has been a reminder of just how many I have touched in the decade plus I've been here. So, if your preference is to give to a fund that is won't go to my pocket but for a fixed cost, go to this site.
OK, that's all the shilling I will do.
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If this is your first post, I'd recommend you go back and read the previous posts that talk about the discovery and the first few treatments. It'll help you catch up. if you haven't yet, here's everything in order from discovery to the last treatments:
The Fight Ahead (The official announcement)
The Next Steps (The meeting with the medical team)
Round One Done (First treatment weekend)
Step Two (Likening the fight to a game of Mortal Kombat)
Third Battle (Things a little tougher)
Four Rungs on the Ladder (Written while at treatment)
One thing I save you from for the new readers. While checking out social media or these Go Fund Me posts, you may see the two hashtags of #MAAGA and #KACA. The first one is NOT a political endorsement, but both tags are from my wonderful friends who are doing everything they can to keep me in good spirits. Thus, we have "Make Al's Ass Glorious Again" and "Kick Ass Cancer's Ass." Everyone who has been told what these stand for love them, even my oncologist and his Nurse Practitioner. For those at the office, I have brackets with both of these hashtags on them in the Monty Python Holy Grail, feel free to help yourself to one. It's a great excuse to say the word "ass" to company you may not normally would.
Look, I have rectal cancer. I'm going to have a colostomy bag at minimum for some time when the surgery happens, and there's a chance it'd be permanent if they can't shrink the tumor enough. I have to have a sense of humor, and embrace it for all that it is.
I'm also not going to bury the lede any more before I go into a recap of the past two weeks, both the good and the bad. When you read the Third Battle, you'll see that one of the things they do is take blood and test all sorts of things. After each "cycle" they test for the Carcinoembryonic antigen level in my system, or the CEA level. It's not a good way to tell if you have cancer before a diagnosis, but it's a good way to check on the progress of your cancer during treatment. The normal range for the blood is 0-4 mL.
When I started this, I was at 42.4. So...yeah, had cancer.
After the first cycle, or two treatments, I was all the way down to 10.5. Clearly, this stuff is working. Awesome, we are making progress.
They tested it again on Friday, essentially after two cycles and before cycle three started. It's down to 2.9.
That's right, I have a normal amount of CEA in the blood after only two cycles of chemo. I still have a long way to go, and after this cycle I'm going to have a scan to see how much the tumor has shrunk. But this is amazing news. What my team is doing is working. I have nothing but hope at this point, and my team is telling me that despite the strength of the treatment, I not only look good but my reactions have been pretty good compared to the worst of it. So, when you read about the annoyances, know that's how I view them. Simple annoyances that I have to work into my daily life. When you get numbers like this, it helps you put up with the side effects.
It's good to know this stuff because with each treatment, the side effects basically compound. After the first treatment, I was basically back to "normal" in three to four days. After the second it was a few more days, and with each one it's taken a few more days. This time around I mostly felt normal, except the metallic taste in my mouth wouldn't leave, and the numbness that hits the back of my throat when I drink something with ice didn't go completely away. Keep that in mind.
So what have I done in the past two weeks? Oh, a few things.
Let's start with Thanksgiving. It was slightly more difficult this year because of the instant numbness that hits when I touch things that are cold, and of course that Mother Nature decided to give us January instead of November temperatures, but that wasn't going to stop us from having a Friendsgiving. See, for those that done know, Kat's family lives in Texas and mine in NC. Due to work obligations for the both of us, and the sheer logistics of trying to "pick" a family, we stay here for the holidays. But, luckily my best friend Bobby and his boyfriend Alex also stay at home and live in the area, so we get together at Alex's house in Rhode Island and cook the hell out in his kitchen. We start with mimosas, bake a Pumpkin, two apple, and a lemon meringue pie, then the turkey goes in. We inject the bird with a little Tony Chachere's butter marinade and then top the bird with Bobby Flay's Herb Butter on top. This year I finally invested in a remote probe thermometer to get the right read on the bird temp instead of relying on that stupid silicone thing and the "open the stove to check" method. I found one on Amazon for only $17 and it worked great, so I'd recommend that option for everyone.
I normally do most of the work with Kathleen on this part of the cooking because Alex and Bobby have their cooking/cleaning they do later. It creates an even distribution of labor that way. This year, however, because of how sensitive I am to the cold, everyone chipped in a little more than they normally would, and I finally invested in an apple corer for cutting up the apples. But you think we just have turkey with desserts? Oh no, my friends, there's more.
When Kathleen and I got married, one of the things we registered for was a Crock Pot that we still use to this day. Kat's paternal grandmother loved that we asked for something so practical, and rewarded our choice with THE BEST dressing recipe. Ever. It's fresh cornbread, a loaf of bread, veggies, a pulled rotisserie chicken, chicken broth and cream of chicken soup, plus spices. The satisfying part is making the cornbread the night before, and then ripping all of these things up to toss in the pot. The bonus is that the chicken carcass can be dunked in a pot with herbs and water to create the base of the gravy that will be served later. It gets mixed with corn starch and the drippings of the turkey for an amazing topper for your dressing and bird.
But that's not all! With this meal you'll also get some of Bobby's amazing mashed potatoes that is mixed with whole-seed mustard. You'll also receive, for this limited time offer, a side of fresh green beans that are sautéed with Apple Jack brandy. That, my friends, gives you a full plate of Thanksgiving goodness. All made by the best of friends, and enjoyed over wine while just chatting about life and enjoying the moment. I look forward to the traditions of the holidays, but frankly Thanksgiving is my favorite one. It's the best day spent with great friends, and the satisfaction of hard work paying off in the end. I was also thankful that this happened after a treatment weekend than the night before. Even though I had to work on Black Friday, it was a lot better than having to head to the hospital.
The weekend wasn't done, though. After work I met up with Kathleen and we took advantage of the sale Best Buy was having on the new iPhone to get the XR and our first upgrade in three years. Kat got the red and I got the blue, and thanks to the offer from Best Buy we were able to get the 128 versions for the price of the 64, and they will just be spaced out on our bill instead of us having to plunk down $1500 at once. They are awesome phones and I'd be shocked if these don't last us the same three years the two 6s phones did. That said, one phone will end up on eBay, and one will stay in the house as an emergency back up. We celebrated the new phones by going to see "Fantastic Beasts: The Crimes of Grindelwald." A little dinner and movie action, and going out for a non-treatment dinner date for the first time since this whole thing started. The movie was...eh...you need to see if you're a Harry Potter fan but you'll probably feel the same about it as you did with the first part "Deathly Hollows." A whole bunch of set ups, but I'm eager to see where they go with it.
But that's not all! The last thing I did for myself before all of this started was go to see "Hamilton" thanks to a wonderful friend of Kat's who had a ticket to spare. This was on the day that the cancer diagnosis was official, so the enjoyment was muted a bit. I decided it was time to bust out of the apartment on a non-treatment weekend and do something I enjoy and haven't done in months: play poker.
I've been playing off and on ever since the boom hit in '04. I'm not someone who can play on-line, I'd rather be at the table, feel the chips in my fingers, and talk to people. Sitting at a poker table is a fascinating thing. You can either be a jerk or you can make friends. You understand that when you are in a hand against each other the goal is to win, but you can do it in a way that either puts the other person on tilt and make them make bad plays, or builds trust to where you respect their moves, and then gang up on the ones who decide to be jerks. I'm not an extrovert by nature. Far from it. For some reason, though, at the poker table I love talking to the folks that are clearly regulars and hearing their stories.
I play both tournaments and cash games, but I don't go crazy at either-low level tournaments that are barely $100 for entry and $1-$2 cash games. The nice thing about going in person is that instead of getting trapped with an idea of just instantly reloading when your account goes down, you have to pay cash to get chips. When the chips are done, you are done. It makes it to where you can only play when you have the budget to do so, and it takes a lot of the stress out of playing. It's now entertainment, and if you can play well enough to win, it's a bonus.
This past weekend, I played well.
The tournament at Foxwoods didn't go well, I lasted about halfway through and then I made boneheaded all-in move when I knew I was beat. But, once I was done I moved over to Mohegan Sun for the $1-$2 game and some Jersey Mike's before. Mohegan went much better, as I played tight and patient. One of the easiest mistakes to make in stakes that cheap is putting in your $2 with any two cards and not be willing to call a raise. My rule, generally, is that if I'm not going to call a raise I'm not going to call $2. I generally don't raise pre-flop unless I have the top of the top pairs, and even then I may just call a raise to see what comes out on the flop. The strategy served me well several times, and I ended up not only winning back what I spent on the tournament, but what I spent on dinner, gas, and still had some left over to buy some Krispy Kreme donuts to bring home. I also won the respect of a couple of seasoned players at the table, including one player who almost called anything you put in. Once I won my last pot against him to end with the highest number of chips I had all night, I grabbed my tray and headed out, much to the disappointment of the rest of the table.
On Sunday, as with all non-treatment weekends, laundry called my name. Once that was done, Kat had to go to work, so I decided to treat myself to another movie. This time it was "Ralph Breaks the Internet." It's a sequel, so on some level it'll never be as good as the original, but it had some really good moments and was not only very enjoyable, but I suspect very rewatchable. It was great way to spend the afternoon, although I do kind of wish I had brought my own soda instead of getting one at the snack bar. The cold neuropathy is still there, and I suspect no one would have really cared. It's something I'll note for the future, but man, that popcorn really tasted good.
Also, if you go to a theater where you have to put the butter on yourself, I learned a great hack. Grab a straw from the concession stand, put it on the nozzle of the butter dispenser, and push it down the side of the bag. Slowly dispense the butter up the sides of the bag, and all of a sudden you have buttered popcorn all the way through. It's a great trick, and made for much tastier popcorn.
It was the most fun I've had in a weekend in a while. In the end, though, I may have pushed myself too hard. I woke up on Monday feeling OK, but then after my shower I randomly started dry-heaving. Nothing came up, but it was something that had never happened before. Since my desk sits probably as far away from a restroom as it could, I didn't want to risk that this was the start of a bad day and I'd have a situation where I wouldn't be able to make it, so I did something I haven't done in...years...I called out.
This is a major change for me, as growing up I had the idea of "getting through it" instilled in me by both my mother and stepfather. If you feel even mildly bad, you can still get through it and save that sick day for a day when you are really sick. That attitude built up my time off bank to where it'll allow me to get through this and still take some time off for myself, but it's also not going to help me get better from these treatments. So, I'm determined to listen to my body more this time around. The day off helped, and I was back to normal on Tuesday.
Well, close to normal. I mentioned before that each treatment has the side effects compound on themselves. It's tougher to touch cold objects without the hands going quickly numb. As I mentioned, when this started I could get back to normal eating and drinking within a few days. This past week, even on Thursday I was getting a fountain drink with no ice because the ice would slightly number the back of the throat which throws the taste buds off. Cold bottled drinks were OK, although a little numbing. The other thing that has become an issue is the hair.
So, my treatment is a mix of drugs. One of them, Irinotecan, does have hair loss as side effect. It's not the same as going fully bald that some chemotherapy drugs have as a side effect, but it does call hair thinning. Every shower brings several strands of hair into the hands, and every comb and brush brings more. I saw my stylist this past week for my midpoint cleanup, and she noticed how the hair was noticeably thinner than just three weeks ago. It's going to take an adjustment in how I clean it as well as how I style it, but I'm not going to go for the fully bald look. It's been four weeks since I started the new drug, and considering the main side effect was supposed to be diarrhea and that hasn't materialized, I'll take losing a few strands of hair. Especially since it (should) grow back.
The other part that didn't go away this time was the metallic taste in the mouth. It hung around for all two weeks, which made drinking plain water difficult. If it's this way after only four treatments, how bad will things be by the end? Will I need to be walking around all bundled up? Will I need to be constantly sucking on objects in order to keep the taste out? How much hair will I ultimately lose? Are these the only side effects I'll face, or will others start to creep in?
That said, there are only three more of these left before we go for radiation. That will be a completely different set of obstacles to deal with, but that is a bridge we will cross in the end of January. I will know more as we get closer, as they just don't start zapping you immediately. There will be a scan to tell just how much things have gotten better, the tumor board will meet to confirm the treatment plan, and then we sit down with oncologist and radiational oncologist to confirm the length of treatment and the chemo drugs that will be put in at the same time. The wonderful news from this past week? My little side pump that's only an accessory for the weekends will be a daily accessory during this process. That news was...exciting.
Luckily we won't be dealing with this till the end of January, and it's just a temporary thing that'll last 4-6 weeks, but it'll be another adjustment. One I'm ready to make thanks to the love and support I've gotten from all of you. Keep it up, as there are many more races to be run on this. I almost could look at this like a triathlon. You have the chemo, then the radiation, then the surgery, and right now we are a little past the halfway point of the first leg. Let's hope there aren't any stumbles along the way.
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