2018 March 29: How to Spend All that Quality Infusion Chair Time! And More Skincare Solutions!

Today was a biweekly doctor visit and infusion day and I also watched one of my favorite movies, so I have OSO MUCH to tell you, I can barely (am I the only one who just got my own pun?) stand it.  BUT! Before I regale you with stories: we have some grammar-ing to do, America, and I have chemo brain, so if I don't blurt this out at this very moment, I may forget to discuss it for weeks.  I know the Republic is on the brink of collapse and everyone is getting their nuclear bunkers ready, but let's consider the TRUE CRISIS FACING US RIGHT NOW: the bi/semi prefix crisis. It's very clear in my own head: generally speaking, "semi" (as in semiweekly) means "twice in a" and "bi" (as in biweekly) means "every two." That's just how it works.  Can we all just agree to this and stop feeling befuddled by whether a bimonthly suubscription means you get something every other month or twice in a single month? I can only take so much confusion and insanity, and this bi/semi business is the last straw. 

I think this is from "The Devil Wears Prada" but I can't be sure because I

never saw it. I do know, though, that it's Meryl Streep, and you can never 

go wrong with Meryl Streep.

Glad we got that cleared up. Now. Back to our regularly scheduled programming.  The doctor visit. The infusion chair. Skincare solutions. And a cameo by Drew Barrymore! (Well, a virtual cameo. I don't know Drew Barrymore but I really wish I did! Drew, call me, girl! I've been through a divorce, too, and am a fairly good listener. Plus, the chemo brain means I probably won't remember what you tell me. I'm like a vault with an extra good lock!) 

Although it's hard to believe, I don't mind going to the doctor's office every two weeks. I usually have so many complaints, questions, and ideas stashed away after that 14 day break that my frequent emails to my care team have become inadequate. This may be (highly unlikely) because I'm *thisclose* to being awarded a MacArthur Fellowship, but is (much more likely) because I spend too much time thinking about things due to a lifelong anxiety disorder. Since chemo brain is on the rise here in my personal little corner of the Universe thanks to my current chemo regimen,  I try to write everything down on the notepad app in my iPhone so that I won't forget all of the things I've been worried about. As it happens, I sometimes open the app - or, even worse, go to open the app - and then forget why and whatever I was thinking of fails to make it to the list. Today, for instance, I forgot to ask my PA, Jo, if she thinks it's possible that I need less sleep now that I've changed chemo regimens. Because guess what? After all of my whimpering and wailing and discussing and lamenting over my inability to wake up early, which truly has been the case for much of the last almost five years of my life, since I got home from DC...I've woken up between 7:45 and 8:45 am every single day. No alarm clock or anything! I'm starting to think it's going to stick. How can this be happening? I have no answer, and thanks to the fact that I forgot I had the question, I didn't get an answer from my people, either. (Medical team, if you're reading this, what is going ON?) So, that one is still a mystery. I did get answers to several other questions, though, such as the usual "what is my platelet count and my WBC, and is my liver function still good?" My platelets, which you'll be happy to hear if you've been following my blog or know me and which you won't care all that much about if you haven't, were in good shape: 130K (most patients have to have 100k platelets or higher for treatment)! My WBC (white blood count, which is the part of your immune system that fights off illness but often takes a huge hit from chemo) was just a tiny bit low: 3.7 (healthy levels are above 4.0) and so I had the go ahead for infusion today and feel like I can perhaps stop spraying down the children and all items I touch with Lysol. (No, of course I don't really spray the children with Lysol. That much.)

I also asked what I can do for my scalp, because although my skin is doing much better thanks to the skin care products I mentioned a few posts ago (and a couple of others that I have to share...), the clindamycin gel I was prescribed and apply twice daily, the doxycycline I take twice a day, the removal of all jewelry even though the rings and necklace I regularly wore were either 14kt rose gold or la-ti-da platinum, and - yes - some decent skin genetics, my scalp is still a scaly, itchy, scabbed and bleeding mess. And as someone who harbors a bit of paranoia about lice (okay, maybe a lot of paranoia, or at least enough to direct my very good friend Moyra to burn my house down for me, which I will point out she did not do because she is level-headed, compassionate, and pragmatic and the only reason I can fathom that we are close friends is because opposites attract and I somehow amuse her) thanks to children in elementary school and a previous bout of lice that attacked us last year through NO fault of our own beyond sending children to school, I have to tell you that I cannot even look at myself in the mirror right now without at least a small amount of panic that those tiny beasts are back, because my hair is rife with teeny, tiny white spots (that are very small bits of my scalp, NOT lice or nits - trust me, I've checked...and checked...and checked...and checked...and woken up in the middle of the night to check. And then checked again, just to make sure). Which I suppose is a nice break from worrying about cancer and all, but then again, not really. Anyway, as my college roommate Jenny suggested when I was in DC (didn't I tell you she's All the Good Stuff?!), my PA said that T-Gel shampoo is allowed for Erbitux/Vectibix users when I asked her about it! She also did a little sleuthing and discovered a prescription shampoo called Olux. Unlike my skincare recommendations, I have not tried either of these options yet, so don't go sailing into your doctor's office saying I sent you (namely because they won't know who I am and also because that "Dr. J" part of my name refers to a PhD, not an MD) or accusing me of making your scalp sting. I will report back, though, once I have tried them and give you my honest assessment. I'm a little skeptical about the Olux, to be honest, because it's a steroid cream and says that skin irritation is the most common problem with it, and also the shutting down of the adrenal glands, which I don't understand yet because I had chemo today and they gave me a Benadryl push which makes me woozy and incurious, I did not want to read about my adrenal glands because I can only have so much medical knowledge in my brain without losing track of it, and also feel like poop due to my infusion, so give a girl a break. Or a woman. Whatever. 

I also asked Jo, who is very patient and even pretends to care about all of my questions, if the Lonsurf I took could have been giving me some lung inflammation, because now that I am seven weeks out from having taken it, my lung capacity is showing definite improvement and I have only used my oxygen in Denver once since I got home from DC (throwing up in DC - is there anything it can't do for you in the long run?!). She did not know but agreed that my lungs sounded stellar and also that I am a medical enigma. I really am not someone to look to if you're wondering about normal side effects or complications from treatment. Personally, I think it's because I'm an educator all the way to my cellular level and also because I like to keep people on their toes, which most of my friends and family would probably agree to and not necessarily in a good way. But I digress.

Once I broke out of the blood work appt and the doctor visit, I headed down to Infusion. The infusion center at my facility is large - 40 chairs, most with nice views of the mountains, and some private rooms with beds for those of us who feel especially terrible or need isolation. There's also a curious little room that's kind of open and has at least 8 chairs in it for clinical trial patients but when I was in a trial last year, they didn't put me in there and I don't know anyone else who has been or is on a clinical trial there who have been in there, either. I think it's because no one wants to sit around looking at everyone getting infusions so what the hell were they thinking when they designed that room in the first place? - but I really don't know. Maybe I'll ask next time. Hell. Maybe they've already told me and I just forgot. 

Anyway, I was early for my infusion appointment because everyone was on time (well, I was a little late because must have Starbucks but they still got me through bloodwork and to my Dr's appt on time. Thank you!), so I headed over to visit with a fellow p-vivor who was having an infusion of her own. It was nice to know another patient on the floor because I usually don't - I'm not all that chatty at infusions, believe it or not! Then the nurses cornered me after a while and ushered me over to my own chair and I was happy to see that Katy was my nurse because I like Katy; she treats me like a friend rather than just a patient and it makes all the difference in the world. I also got my stuff out and set up my little day camp because here's the thing to those of you who have not had infusions: infusions take forever. Like, I arrived at 9:15 this morning and didn't leave until 3, and I sat down in my infusion chair at 11:10, right on time. 

The big question many people have asked me, whether they're just curious or they're feeling like they should visit me or they're about to start infusions themselves is: "What do you do while you're there?" And that's a good question! For me, I've come to realize that it really depends on the day. I always bring enough stuff to be comfortable and to occupy my time, but I also know that I often fall asleep (due to pre-meds) or feel drowsy, sick, or just out of it (due to pre-meds, the actual meds, and other factors like my attitude or new information I've learned or the weather or how much sleep I had the night before), so I've learned not to try and do all that much. So, here's a little hip or horrible list for you when it comes to infusion day activities:

Hip.                                    Horrible.**

word searches                     the Saturday crossword puzzle from the NYT

trashy magazines                the Economist

YA, happy endings               Proust, Tolstoy, Murakami 

"Friends"                            "Meet the Press" 

funny memoirs                   important books about Important Topics

LaCroix, pretzels                 green drinks, sushi

writing postcards                 writing heartfelt letters

fav pillow & blankie             tight pants

slipper socks                       shoes with laces

your best headphones          listening to the guy coughing in the next bay

visits from people                visits from people who feel pity or fear

soft zip-up hoodies              wool sweaters

Other items to bring or consider: your football (of course! have I taught you NOTHING?), pictures of people you love, a tablet or laptop, a sense of humor, patience. The sense of humor, the football, and the patience are pretty much required as far as I can tell, though. Otherwise, you're likely to have a sh*tty day.

Sometimes, I set up my laptop, my book, a magazine, a snack...and fall asleep. Other times, I run my mouth a mile a minute at anyone who will listen. You just gotta roll with it, babe! It's all about the zen! Let it go! Let go and let God! Be here now! Whatever it is that you say to help yourself chill comes in handy here. Actually, it comes in everywhere, every damn day, when you have cancer or another complex set of medical needs. Which is, to my mind, both humbling and empowering at once. You only have so much control. But then again, you do have so much control! Ack. I sort of feel like somehow I've brought us back to the bi/semi coin toss from the beginning of this post. Which tells me that it's probably time to wrap it up. For my other skincare suggestions, click here and scroll down to the bottom, because I added them to the original post. I'm sorry if I tricked you into reading a whole post that you weren't interested in. Well, only a little sorry, because I worked on this post for several hours and I like it when people read my work.

Happy weekend! May it be free from barf and full of love. 

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**Most of these are only horrible within the context of infusions. I actually love books about Important Topics, green drinks, crossword puzzles, and so on. You can probably guess which ones I don't like without me telling you. So I won't.