On Finishing Chemo
So here's a recap of the chemo experience, or, rather, what it's like being six week PFC (this means Post Final Chemo, for those of you not fluent in the online cancer treatment lingo), and what it was like going through it on the days after each round.
My chemo was on three week cycles, and when you measure your life in chunks of three weeks, it goes by really quickly. Here's how that cycle goes:
The first week is 7-9 days of delirium starting 2 days after chemo. I don't start the cycle with the chemo, because I feel like the symptoms somehow more accurately follow the Sunday-Saturday schedule.
So if I have chemo on Thursday, I'm all hopped up on a mega-dose of steroids that makes me all flushed and feeling like She-Ra until they run their course a couple days later. 24 hours after chemo, I get a $6K shot of Neulasta to help boost my white blood cell count after the chemo kills it all off. The Neulasta kicks your bone marrow into hyper-drive, so you feel this aching, kind of dry, wooden, hollow pain in all of your bones, from the long bones, to the intricate little ones in your wrists and ankles, to your ribs and pelvis. I'm not used being nerve-aware of my bones, so this is an odd sensation on top of it just being painful. But I digress.
I could feel all of this, thanks to Neulasta.
At first, I'm on so many steroids to help me handle the really super toxic part of the chemo reaction that I don't feel anything for a couple of days. Chemo Thursday is fine. Friday is okay. Saturday is mediocre but I'm getting tired. Sunday, I'm out. This to me is the beginning of Week One.
The first week goes by in a flash because I'm not really conscious. I'm not really asleep, but I'm in bed just being still. I don't look at the phone or listen to music or podcasts or anything; I just lie there. Toward the middle of the week, I can leave my bedroom and join the family in the living room for a while. But I'm still delirious through about Saturday. I live on iced lemon water, bananas, Gatorade and protein drinks, and occasionally some fruit & yogurt or a juice popsicle. I'm not nauseous, but I don't have the energy to chew, really.
The second week is better, and I begin feeling like eating food again, but the medication does a number on your digestive system, so I'm on the BRAT diet. I make a big thing of white rice with a little salt & butter and I have a little bowl whenever I'm peckish, but it's still mainly protein drinks and water and gatorade or coconut water. I spend most of the days in bed or on the couch, but I can once again read or mess around on the phone, which is more than I could do before.
^^my chemo diet^^
Toward the end of the week, I begin feeling more like a human, and on Friday, I can venture out to help count the money for Lobster Rolls at Grace Church. It's a sitting-down job and it's in the back office, so I'm not exposed to people. It's still too dangerous to be in the general public while I'm in the middle of chemo.
By Sunday, I might have the energy to take the pup on a short walk down the road about a half a mile, slowly. By Tuesday, I might be able to get out of the house to go see a friend and get a change of scenery. I'm still exhausted, so I go to houses where I can hang out for a little while and then take a quick nap before driving home. I've never been this kind of tired before that I felt I could fall asleep behind the wheel on a mid-day 15 min drive, but that's where I am now.
Wednesday, I start back on the steroids and Mom and I pack up and get back on the ferry to drive up to the hotel in Boston where we stay before chemo on Thursday. Then it all starts again.
When you measure your life like this, you have about 3-4 days out of three weeks where you feel almost human, so the time both lags and flies. Being so sick you're not functional warps your perception of time, and the fatigue gets worse as it goes on, so at the end of the 12 weeks, I felt like I'd been run over by a truck. It wasn't until about 15 weeks after my first chemo that I began to feel like Kate again, and then it was time to move up to Boston full-time and start daily radiation. It's a brutal schedule.
Feeling a little like plastic Sysiphus, here
I keep on telling myself that I know it could be so much worse, and being in the Hope Lodge, I find myself thinking I feel like I have cancer-lite compared to the people here with brain cancers, or multiple myeloma, the ones with stem-cell therapy who are so neutropenic that they not only wear surgical masks and beanies, they have to wear surgical gloves around the clock so as not to touch any possible contaminants. But I'll speak more on the Hope Lodge later; this is the chemo follow-up here.
So the last chemo was a real humdinger. I'm pretty sure it was a stronger dose because they recalculated it due to the weight I've gained from the chemo. Anna was there, and it was my birthday, so she made the whole trip awesome, but the next three weeks were brutal. I lost about ten days this time around just sleeping and wandering around the house, then a week doing the most basic of things each day. I made it my goal on the second Tuesday after chemo to take a shower. That was my only goal that day. It took me until Thursday to make it happen, and then I had to immediately lie down for a few hours in my towel because I didn't have it in me to dry off and change back into pajamas.
The hot flashes have gotten insane. I'm getting them once and hour but they're getting more intense as the frequency decreases. I'm beginning to notice triggers for them, though, so I'm going to start playing with that. They prescribed me Effexor for the hot flashes, but I'm super dubious about taking a mental health drug for a physical symptom, so I've been staring at the bottle for about a month.
I can't really sleep very well. I'm up most of the night, most nights. I fall asleep in the early hours and then have to force myself to get up before it's too late so I can let the pup out and be a functional human being. I have meds I can take for it, but again I don't really want to take a bunch of pharmaceuticals. I've been taking CBD oil to help with some of it, and it helps somewhat when I remember it. But not 100%. The sleep thing worries me about going back to work full time as well. I feel like with the insomnia, the odd hours I'm keeping, and afternoon radiation schedule, my 8-hour work day is going to turn into me working a few hours in the morning, going to treatment, having dinner, and then staying up all night to finish work, and I'm not ready for that stress yet. Ugh. I have to figure something out. Mind you, I'm writing this at 4:53am after finishing some work from last week. So the fear is somewhat legitimized. Hard to find that balance.
I had a last-minute trip to Maine with my friend Jill, which was perfect because we were heading into a massive heat wave and the place in Maine is on a lake (technically a pond, although it's huge--I'm told it's a depth thing) so I was able to stay suited up most of the time and dive into the water when I hot flashed or when the outside temperature and humidity got to be unbearable. It was stunning. For the first time, I understand why Maine is Vacationland. We had to wifi, no TV, no cell reception at all, save for down by the water, so I got to strategically decide how accessible I was each day. I did a lot of work while I was there, but only while sitting on the dock, so when my battery ran out, I had to stop. It was refreshing.
The Maine Office
Oh yeah, I've also started back to work, a few hours a week for now but moving to full time September 1, as my department is hurting for people. I'm really nervous about returning to full time. I can't even handle the bare minimum these last few weeks, so tripling the workload seems pretty rough. I know it was hard in part due to all the rushing around to prepare for the Hope Lodge and radiation, and packing up my things, and then the first week up here was filled with several full days in the hospital. I know that's going to be over, but still, the thought of an 8-hour day when I'm still so tired and have to run out for 2pm radiation every day is now scary as hell. Hopefully it'll be better when I get in a groove. Fingers crossed.
So what is life like since chemo? Let's give it a run-down.
I've gained about 15lbs, from the effect of the drugs as well as from having to essentially be on something resembling the BRAT diet for three+ months after eschewing carbs for the last several years. So that's fun.
The cold capping to keep my hair was largely successful, but I think I jinxed it. One week out of chemo, I had about 85% of my hair. Three weeks out of chemo, I had about 80% of my hair. But in the last three weeks, I've lost about another 20%-25% of it. I have a handful of bald spots, mostly on top, toward the front, but they're not super noticeable when my hair is dry. I can do some strategic combing and cover them for now, but I'm still shedding.
Patches where I'd rather there were hair
I've been using ice packs on my head, and that seems to help when I get that telltale sore scalp that precedes a big shed, but every time I think it's over, it starts shedding again. I can't use any product except for Aveda Dry Remedy oil, which isn't really a styling product, and I'm still using the shampoo that the cold cap company sent me. I get nervous every time I brush it, and I kindof gather the hair that comes out in my brush every day to keep track of it, although I don't know why. I don't need to see a clump in the trashcan to know how much thinner it is, but it's a sick fascination at this point. I just want to get out of the woods, to the point at which I'm not shedding anymore. I just want it to be back to normal.
I think it's just beginning to grow back in some of the bald spots, which is good, but I keep coming back to the thought that it's going to be at least 3-4 years until my hair is the way it was before cancer, and that really messes with me. My long, curly hair has been part of my identity my whole life. More recently, it's been the awesome red color created by my genius colorist Ryan in New Orleans. Now it's nearly half-gone and I can't color my roots, so the LoRusso family's premature grey is all coming through, making it look even thinner than it is in places. I've lost a lot of my lashes and brows, as well, and I can't wear makeup with my skin this sensitive, so leaving the house is an exercise in humility to me some days.
So now I'm in Boston and I'm one week in to daily radiation. But that's going to be a blog on its own, so for now, I bid you goodnight and send you away with a few more beautiful pictures from Maine for your entertainment.
10/10 would go back tomorrow if they'd let me.
