2018 June 29: It's Just a Phase

Surprise! I'm posting again, twice in one week! 

Q: OMG! How can this be?

A: I had an check-up and chemo yesterday, and some thoughts about that. So I thought I would go ahead and share. Chemo brain teaches you not to wait and write it all down later, because later arrives and your brain is blank in the spot that was holding your thoughts. It's nice. I hope you never have to try it, and I also hope that you have a lot of patience with your friends who DO have chemo brain (because they do!) and forget words, comments, previous discussions, plans, addresses, directions, phone numbers, what they were going to say - you name it. They are much more frustrated/annoyed about it than you are, and there's nothing to be done but make lists and calendar appointments and then make lists to remember that you did all that - and then keep the master list of lists somewhere you won't forget. I know aging leads most down this road eventually, but I'm 43 and had a photographic memory for the first 38 years of my life and this particular set of side effects really upset me. Now I can laugh about it (usually) but only under certain circumstances. 

But this isn't a post about chemo brain! Stay on target! It's a post about my appointments yesterday and a bunch of other stuff. I saw my people yesterday, and was especially excited because although I absolutely trust and like and enjoy everyone on my medical team, we all have certain people that we can't help but love a little bit, even when they're your nurse or your NP or what have you.  My appointment card said I was going to see my favorite NP - but I was skeptical because they've pulled that bait and switch on me in the past.  But lo and behold! She WAS who I saw, and it was really a fun appointment because she laughed at my jokes and let me show of pictures of my kids and I'm not saying it's BECAUSE she was the person I saw, but all of my numbers were good! I was a bit of a hot mess with the hair and the toes and giant spot on my chin that someone keeps picking at uh, while I'm asleep and it creates terrible weird skin reactions (oh, so surprising) and scarring. And then they did my bloodwork and threw in the old CEA number so I was an anxious hot mess and didn't even have any xanax in any of my pockets or my purse (What the hell? The football needs maintenance.). I don't know about you but when I'm anxious (but not panicky - I was saving that for the results), I talk a mile a minute and offer entertainment to distract everyone from my pallor and my shaking hands and so on.  So the first batch of bloodwork came back and like I said, it was all good: platelets happy at 136K (for those of you keeping score at home, it's now been 15 months since my last partial splenic embolization and those platelets keep coming back up!  Yippee!), RBC and WBC counts both strong, liver function numbers in range and so on. Magnesium was a little low, so now they've decided to make me get it via IV every infusion, which adds almost an hour to my infusion time! (Because four hours wasn't enough already.) She gave me a toe infection prescription and lectured me about not using alcohol on my tootsies to clean the grossness off because my skin can't take it. (Jeez. Even my feet are on the wagon these days. It's a travesty.) This gave me secret happiness, because you may not realize it but alcohol swabs don't just wipe away germs - they also wipe away your toenail polish, and  nobody got time for that around here these days. 

Then she shooed me out of there EVEN THOUGH THE CEA HADN'T COME BACK YET. No one on my medical team wants to be in the room when it happens. Understandable. I just said that if the number was higher than last time, I would be writing a strongly worded text and also verging on hysteria down in Infusion so please to come check on me. She agreed. I left. We checked into infusion...and waited. Nick wanted lunch but of course he knows leaving me alone before the CEA came back would not be a good idea, even though the alternative was staring at each other and me sweating a lot around the foot area. Tick tock, tick tock...so much of the cancer experience is fucking tick-tocking it out. Waiting is the worst thing in the world, and it's often the only option. I wish I could say that I have trained my mind to go all Yoda zone when there's a wait, but I have not. The best I can do is Princess Leia zone...but not the real Princess Leia. No, I'm referring to my childhood pet Princess Leia, who was a feisty and casually beautiful pearly goldfish who handled a weapon better than any guy goldfish and didn't even need training to be a total badass - despite her built-in attention span of seven seconds that now that I mention it, reminds me a little of chemo brain: 

RIP, stock photo fish approximating my former beloved pet. 

Within 15 minutes, the CEA number came back...and it was significantly lower than last time (a little less than 50% lower)! This is most excellent news and furthers my ability to keep on with these meds despite the . I am trying not to get too excited about it, because as I was reminding a friend of mine yesterday as she lamented the end of a lovely part of her baby-mama life because said baby was growing up: "it's just a phase." This has been my parenting mantra (aside from Sweet Baby Jeebus, help me) for many years (well, at least 10 years). All the bad stuff, all the good stuff, all the awful and frustrating and amazing and wonder-inducing stuff: it's just a phase. This mantra has now become part of my own life, living with cancer. And really, shouldn't it be a part of all of our lives? Try to keep it in mind during the bad times - and the good ones, too, if you think it might help you. It's handy for the hellish bits - you can be reminded that they will come and go. And it helps me not take for granted the beautiful and joyful, the simple pleasures of connection, of communion, of growing. Remember that it's all fleeting. WE are all fleeting. The human experience - fleeting. In the midst of life, we are in death. Everything in nature reminds us of this. As much as we try to push that reality away in this day and age, it cannot be phased out or retired. Yes, live every day of your life. Yes! Take advantage of every opportunity to prolong your wellness and vitality! And yes! Remember that we are crafted not in the image of (a) God, but in our own human beauty and frailty.

Sheesh. That got a little deep, especially for a paragraph preceded by a fancy goldfish. But I'm not going to excise it, because it was on my mind and has been on my mind these many weeks. I've had several friends lose those most dear to them, and have seen other friends struggling with a variety of complicated health issues. And there's just no way to speak to or consider those losses and agonies without thinking about the whole damn human experiment. At least, not for me. A book also has egged on my brain burning: I've been reading Jo Walton's The Just City, which is marvelous and provocative. It's a riff on Plato's Republic, a fiction in which Platonists from across the globe and through time are brought together on an island to take the Republic from theory to lived experience. If you like Ancient Greece, philosophy, sci-fi, or are a fan of Westworld even after season two, take a gander at this book! And then let's have a book club about it. Here, check it out! 

I tried to finish Walton yesterday during infusion, but it was too much thinking and as considerate and helpful and efficient as the nurses are at Univ Hospital, they still have to ask me a bunch of questions and come and check in on my meds and switch out bags and bleep-bloop my id bracelet to make sure no one has snuck in to try and steal my poisons and ask me my name and birthday for the same reason. As I've made abundantly clear in previous posts, I recommend light mental work. Or better yet, a nap! I did some of each yesterday. Mostly napping, because some of the meds make me sleepy and, well, because I could.  I also needed to chill after all of the CEA anxiety and then a brief mania I had experienced when I read that the facility allows MINIATURE SERVICE HORSIES into the exam rooms. I mean, yes, a service dog would be awesome, but a mini horse? Sign me up! The hot minute I need a service animal (if I ever do but I really hope I don't) I am hitting up GoFundMe to raise the Benjamins (I will also accept Hamiltons, obvs!) for my own mini service horse. It's good to have goals.

As it turned out, I should have stuck with the Walton and resisted the nap, because I woke up feeling yucky (technical term) and arrived home nauseous, weak, tired, brain weary, and all the other things that may spring to mind when you consider the phrase "mainlining heavy duty poisons." I also felt shaky, because they administer a steroid along with one of my meds to head of allergic reactions to it. And thanks to THAT little helper, I didn't sleep a wink all night (there may have been one hour and 15 min stretch between midnight and 2) despite my best efforts. I finally fell asleep at 6:30 am. Now my inner clock is all messed up, and I've been trying so hard this week to go to bed by midnight and get up by 8:30 or 9! Insomnia and I have long been frenemies, but cancer really gave it the upper hand, and my nights are very long and usually involve a lot of poking my husband because he's snoring, wandering the hallways of our house, at least one fight with a tangled up blanket, and many frustrations involving my oxygen cannula and cord (I sleep with oxygen unless I'm at sea level).  But I'm sure it's just a phase. It's bound to improve, yeah? Or bound to change and even decline, in which I should enjoy all of this bonus free time and spend it being productive instead of playing solitaire on my phone. Theoretically, I mean.

Happy weekend! Enjoy (or remind yourself that you'll soon be done with) the sun/shade/heat/break from heat/friends and relatives in town/the final leaving of friends or relatives from your home/your vacation/your hospital stay/a trip to the mall/a walk through the park/*fill in the blank*  Remember! It's fleeting.

💌 ~ J