Monthly Archives: October 2013
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I did chemotherapy for so long that it became routine, just something I had to do, like going to a job. I had no fears about it, and in some ways actually sort of looked forward to it. Leave aside the blood draws, the premedication, and the side effects. What did I do for 2+ hours every other Thursday through A/C, and every Thursday through paclitaxel? I got lunch and coffee, bought a fashion magazine and a box of Dilettante Truffle Cremes, then went to the 5th Floor to watch cooking shows, knit obsessively and nap. How awful does that sound? Yes, I usually felt like crap a few hours later, and for days after that, but while the infusion was being administered? It was mostly relaxing. I reclined in bed, and people brought me warm blankies and cookies. I know that’s not how it is for other cancer patients, but that’s how it was for me.
But today, I went for the radiation simulation appointment. Let me tell you, while I was doing my chemotherapy, I kind of put it out of my mind why I was doing it. I just had to do it. But today they had to get my radiation cradle made, which was sort of cool. They mold it to out of polyfoam, so I felt like I was a model for Face Off. But most of the time I was lying on a CT scanning table, looking at the outer rim of a GE Lightspeed scanner. Lying there, that’s when it hit me – You Have Cancer. This is officially Big Shit happening in your life.
I’m back to feeling a little more complacent – I’m being treated for Stage 3 breast cancer at Seattle Cancer Care Alliance, the best place in the nation, maybe the world, for late stage cancers. I’m in GREAT hands. But there is more definitely a higher level of stress in our house. For me, the trigger is the big white CT scanner. For Ken, it may be the same thing. When we were driving away after leaving the facility, he exhaled in this big, slow puff of air. It’s a sound he ONLY makes when he’s under high emotional stress. Like he’s trying to keep it together while I’m going through my shit. Which he is. People think this is hardest on the cancer patient, but I think it’s hardest on the care giver. Especially someone like Ken. Most of my catastrophes and heart breaks, he can DO something about, he can blow the demons away. For example, when I was packing my apartment to move in with him, I was overwhelmed and crying most nights. Overwhelmed to the point of being immobile. One tear filled phone call to him, and he was over shifting boxes and hauling trash away until I had one clean, organized corner on one side of the apartment. He said “Whenever you feel overwhelmed, just take a breath, and look over there. That’s your corner of calm in the middle of the chaos. You can look at that, and know that you are going to get through this, and that I am going to help you. We can do this. It will be okay.” And it worked. It was still a scramble, and at the end I was throwing shit randomly into boxes to sort out later (I think those are still in the storage unit, taped shut), but it turned out okay. I was passed out in bed with the cat at the new house by 8pm, while he was making a store run getting hot cocoa and chocolate for me, but we made it.
But cancer? This is one thing he can’t chase away from me by sheer determination and muscle. And that is hard on him. And he hates it.
But he comes to ALL the appointments, even to the boob doctors and the gyno-oncologists, when most men don’t dare to venture. He holds my hand (or my foot, as was the case in the Symphony scanner at Virginia Mason) when I am terrified. He makes jokes (sometimes) when the doctors are shoving needles into my fibroids to take samples. He rubs my tummy when I’m crying out from the pain of an endometrial biopsy, because I can’t do it myself. And today, he waited patiently in the hall, making small talk with Randall, our goat raising, master gardening half of today’s simulation crew, while I was changing into my gown in preparation for the simulation. I have to say, Randall is fascinating, and extremely entertaining. If you need good advice on growing pumpkins, or how to build a bed for morels, Randall’s your guy. He also knows what he’s doing when it comes to keeping you calm while you wait for the doctor, and how to help you to sit up from the scanning table, which is NOT easy. I’ve been on a lot of scanning tables, and I’m here to tell you, Randall knows his shit.
The doctors arrived, rearranged my position, and then they started tagging my with stickers. I have a lot of flesh to manipulate, and at one point the doctor was asking for something to hold my well padded shoulder tissue out of range of the scanner. I’m not sure, but I think the item they use to hold your fat out of the way is called a “pudgette”. This struck me as appropriate and extremely funny, so I started to snicker a little bit over that, though I tried to stifle it, because a) this is serious shit, and b) I wasn’t supposed to move while the mold was hardening around me.
One test scan, some more readjustment, and then the final initial scan. Then it was time for the tattoos.
They tattoo you so they aim the radiation beams at the exact same spots every time. It hurts like a tattoo, but just for a second or two each time. I’d like to say I’m covered in little daisies or four leaf clovers, but it’s just a lot of tiny lines no one would really notice.
My radiation oncologist has to leave for that part. I think it breaks her heart to see her patients cry out in pain, and knowing that she has ordered it done to them. Some people find the tattoo process very painful, even if they already have tattoos of their own choosing. But I had Randall and Alisha with me, my two techs, and it was over pretty quickly. Then they had to photograph my tattoos, with Randall making jokes about the photographs going on Alisha’s Facebook page, so I pretty much forgot everything about being scared, and started thinking about how I would soon be going home, where I could research how to build a bed for morel mushrooms.
We are about 24 hours post final paclitaxel infusion. Final infusion was a lot better than the week before. Last week I left absolutely drained. I’ve never felt that poorly afterwards, not since the dose dense A/C cycle. Maybe the premeds didn’t have enough time to take effect, but I felt like I had always expected a cancer patient to feel. So worn out, I was ready to cry. I couldn’t even look at people, I just followed Ken to the elevator, to the car. Once in the car, I was very upset. My hands tingled so much (I think I wrote about this last week) I was frightened, sure I was having some kind of horrible reaction. So I was worried going into this last one. Granted, I felt kind of loopy from the Benedryl, but not so completely worn out as the last time.
Later that evening, watching Halloween Chopped with the husband and child, I was so tired I could barely keep my eyes open, and so uncomfortable, I shifted in my seat and moaned and whined for 45 minutes or so. Ugh. By the time Ken shut off the television at midnight (the kid was already tucked in for the night), though I was ready to go to bed, I was WAY too restless to sleep. Ken was in his office, checking for work email and putting on his computer, so I got up and went back to the family room to read. I’ve been obsessively reading Phillippa Gregory historical novels, so time passes more quickly than I realize, and soon it was after 3am. Still I was not sleepy, and kept reading. Finally, I got sleepy and went to bed after 4am. At 6:30am or so, the kid woke me up. And for once, I was not bitchy and “hung over” from lack of sleep.
So here I am on 2 and one half hours of sleep, and relatively speaking, I feel pretty great. Granted I’m not super active, I have only done one load of laundry, one load of dishes, and finally folded the towels that have been sitting on the couch for the last three days. I was in my pajamas until after 2pm, and am still wearing warm-up pants, rather than jeans, so while I’m clean (I showered), I’m still basically wearing pajamas. I hope I can get my jeans washed and dried before we have to leave for the craft store. I have only two pairs that fit me right now. Did I mention that I was 40 pounds overweight before I started this process, and I’ve gained another 27 since I started the paclitaxel. And no, I can’t blame this all on the steroid, though it isn’t helping. Ugh.
So why do I feel so good on 2.5 hours sleep, when on 4-5 I’m usually groggy and pooped out? Maybe it’s the fact that we’ve eaten a proper dinner the last two nights, complete with lean protein and a vegetable. Holy crap, how’d I pull that off two days in a row? Never mind, I won’t ask questions, I’ll just go with it…
Maybe it was the hazelnut syrup my husband brought home for me last night, and cleaning the espresso machine, so I could make my favorite Friday morning treat, a hazelnut latte (Thanks honey! XOXO).
Or maybe I’m still buzzing off that half box of Dilettante Café Creams truffles I ate last night (oof, now you know why I have gained 27 pounds!). Maybe I’ll crash by 6pm tonight – who knows! I’ll take a good day, and not spend too much time wondering why, and how to recreate it. Because one thing I’ve learned, whatever my status is at any given moment – feeling good, feeling like crap, bone tired – things are bound to change, and probably soon.
Now I think about it, my eyes are starting to feel a little heavy. Time for cup of tea, or possibly another mocha truffle…
Just back home after completing infusion number 11. Riding down in the elevator at SCCA, for the first time in a long time, I FELT like a cancer patient. So drained, and my hands tingling like they were shot full of the anesthesia they give you at the dentist…
And for the first time EVER, I had a moment when I wanted to call my doctor and tell her I don’t want to do the final infusion. My hands were so numb, it scared me. I kept thinking how I wanted to take a nap, but I was afraid to go to sleep, as I might be having an allergic reaction. Up to this point, I’ve been taking the paclitaxel like a champ. But the side effects are cumulative, so perhaps an allergic reaction could still happen, even though I’ve had no issues on that so far. Driving home with Ken I was having visions of ending up in the emergency room this time, and was considering calling the oncologist to tell her “I can’t do this again.”
Thankfully, the feeling has passed, and my hands and feet feel as they normally do during this process. Tingling and numb, but well controlled while I am taking the L-glutamine. And in no way frightening. Just annoying.
But I’ll let her know what happened, and how long the effects lasted, and let her do what she does best. Because she is awesome.