cancer – day 86

mid-day

I feel crummy, and chemo doesn’t even start until tomorrow. I made us breakfast and washed all the dishes (why he thinks washing an entire sink full of dishes by hand with water running the whole time actually saves water I’ll never know). Then I checked on my aquarium because it was getting low on water, so I was on the floor under the desk to look in the aquarium door, and then I was just too tired to get up, so I reached for the chemo book off my desk and stayed on the floor under my desk to read more of it. This is not normal Cynthia Miller behavior, just in case you’re wondering.

Halfway through the book, Mark comes in from whatever he’s doing in the garage and yard, sees me on the floor, and asks how I’m doing. He doesn’t hear me respond because he’s turned to walk away from me into his office, so he asks again from over there and walks back into my office. I’m on the floor with his feet, I was too tired to raise my head to look up to find his face. And in a flat worn out voice I tell his feet, “my stomach hurts and I’m tired.” I have no idea what he thought of that, but after a moment he left and I think he’s back outside now doing stuff in the yard, he’s been gone 30 minutes or so. Why the yard matters now is beyond me, shouldn’t we be getting stuff for my treatment, looking for wigs, and stuff like that? Who cares if the leaves that were on the driveway yesterday and the last two weeks are still there tonight?

This whole caregiver thing is weird. I’m too tired to care what happens to me at the moment, and I’m alone on the floor half under my desk with my blackberry and my chemo book, and I know we don’t have any groceries or a lot of the things I’ve read about to make the cancer patient more comfortable during chemo, but he seems to think he’s taking care of me, when I feel like I might as well be alone at my property in Volcanoville for all the “care” I’m getting. In a few minutes I think I’m going to nap right here on this dirty floor (he’s lived here three months with carpet that was dirty before he moved in, and there’s never been a vacuum cleaner run through the house, nor does it appear high on the priority list to purchase one), I can barely keep my eyes open even though I’m such a bundle of nerves I’m trembling, which I have been since seven o’clock this morning. Actually I think I’ve had a little tremble since lunch yesterday, now that I think about it.

I want to go see my cats. And get groceries I know I can eat when I won’t eat. If I can ever get up off this damn dirty floor.

after midnight . . .

I did manage to get off the floor, and got dressed in street clothes to go run errands. As I was about to go out the door, Mark was coming in, coughing from all the gunk he’s kicking up in the yard. We have a brief conversation that I’m going to the post office and to see the cats, and I left, no goodbye.

I went to the pet spa to hang out with Mizzou and Seoul. I think they’re better off at the spa than left alone in Volcanoville. They were both sleeping but happy to see me and get out of their condo cages to roam around the room some more. Mizzou clearly knows the way to the top of the cabinets, just like in my kitchen at home. And Seoul’s becoming a sniffer, checking each little smell along the way, wondering what the heck makes that kind of smell. Very different from the woods, that’s for sure.

Mizzou needed some serious hands-on love for the first ten or fifteen minutes. I’m really glad I went down there, I think it was good for them. Then driving back I didn’t know what to do. A couple hours had passed, but I didn’t want to go back to Mark’s. There was a park near the river, so I pulled off the road and went for a little walk in the shade in the park. And called my parents. We talked about everything that’s going on, and it was nice to just talk with them for a while. We had a fun chat about Burning Man, which I don’t ever expect to go to. It’s a weird thing, having your dad doing research on something like Burning Man, it’s not exactly the kind of thing I’d expect him to have ever heard of anything even similar to before, you know? So to have him asking if I’m going to this thing out in the desert once he’s gone online and found photos and stuff, that was just a little weird, even if I am an adult. My family are good solid Midwestern folk, not crazy Californians needing a week in the desert to express themselves!

Towards the end of the call I felt a little bad about venting to them some about the situation at the house with Mark, and what seems like such a lack of emotional support. Mom’s told me more than once that I just need good emotional support and I’ll get through treatment just fine. But that’s exactly what seems to be lacking here, and it’s making me even more nervous than I would be about chemo if I were going through treatment on my own instead of with Mark as my caregiver. And while it may be good to talk about these things, I hate putting that negativity out on other people. And when it’s something about Mark, I don’t want to say anything negative to my parents because it may upset them, you know? But our conversation ended with me telling them that I was going to talk about the whole caregiver thing tonight and make sure we understood what we are doing together before we go to the first chemo treatment tomorrow.

After that I had some voicemail to check, and I decided I wanted to go to a movie rather than go right back to Mark’s after a trip to the grocery store. But that would mean I wouldn’t get back until seven or eight o’clock, and by that time my “caregiver” would have been really concerned by my disappearance. I went for a five-minute walk without telling him once several weeks ago and he flipped out, telling me how worried he’d been and all that, and I promised not to do that again, I promised to tell him where I was going if I was leaving.

So I sent him a quick text. “I think I’d like to go to Kung Fu Panda @ 4:40. Want to go with me? Else, just a head’s up so you don’t worry about where I am.” He doesn’t always reply to my text messages anymore, so I figured I’d stay at the park a few minutes and then run another errand on the way to the theater, then do the grocery store thing after. Lo and behold in less than sixty seconds, the response was “Yes!”

So I drove to the house to pick him up, and tried to be really nice and hug him and not make him feel like there was anything terribly wrong. There wasn’t anything terribly wrong, but I knew we were going to have to have a difficult conversation later in the evening, and I also knew that this wasn’t the time to stir that up.

We went to the movie, which was great fun, and went to Safeway for “chemo-nausea” foods. On the way in the store I said something like, “we need to get some foods that I’ll eat if I have to even when I don’t want to eat.” And then “I can be belligerent . . . [that made him laugh, it’s so incredibly true] and we need to make this food thing as easy as possible for you so you’re not running off to the store for some craving or searching for some certain food that I think I can keep down if I’m not eating because of chemo nausea.”

So we finally go home and it’s 7:30PM and we should eat dinner. There was some kind of sarcastic remark about me making dinner thing that sent me out of the room to go take my shoes and stop in the bathroom before going back to where he was (my sense of humor isn’t what it used to be, I’m having a hard time taking sarcastic remarks or jokes directed at me right now). He was at his computer. If you ever can’t find Mark, 95% probability is he’s at his computer, every night before he goes to bed, and constantly throughout what I would consider personal time (essentially non-business hours when you don’t have to be worshipping the LCD gods), even on the weekend. So I go in and give him a little sideways hug and suggest I make a chicken Caesar salad for dinner. Which of course he was amenable to. I’ve been doing a lot more of the cooking lately than I would have expected, but hey, if it means I get to eat foods I know I’ll eat, then right now that makes it worth the partnership being lopsided regarding me cooking a lot. It’s just not something I especially enjoy, mostly because there are so many other things I’d rather be doing with my time, and cooking and eating just aren’t high on my priority list. Especially at times like this when I’m stressed and my stomach is tied in knots and the last thing I want to do is put food in it. But Mark gets kinda cranky when he doesn’t eat for a while, so I knew he needed to eat if we were going to have an amicable conversation about his caregiving later. So, I went in the kitchen and chopped up the stuff and grilled the chicken and made dinner. 20-minute job, not the least fancy or anything.

After we had eaten, I still hadn’t brought up the caregiver thing, and I couldn’t finish my dinner so I had to seal it up and put it in the ‘fridge. He stayed at his seat at the counter and started playing with the remote control helicopters I gave him for his birthday, and it was cool because he’s getting good at flying them, so his “flying” got us both laughing and in good spirits. I was at the sink doing the dishes from dinner (no, he’s not yet acknowledging the hints I drop about using the dishwasher instead of washing by hand, he’s shockingly good at not hearing what he doesn’t want to hear). So the mood is light, I’ve just finished the dishes, and it’s now or never.

“We need to talk about the caregiver thing.” “Yes, we do.” “I know I can be difficult, but I can easily teach you how to deal with me if you want to learn it. I know how you feel about people having expectations of you and I really try not to have any expectations and just appreciate you for who you are, but in a situation like this the patient has to know what to expect of the caregiver, to know what care will be given . . . . I don’t want to impose patient expectations on you like that . . . so I guess what I’m saying is . . . you have an opportunity here to set expectations so that I won’t expect more than you can do and I will know what I need to cover myself.” No pause. He starts telling me that what he needs me to do as a patient is tell him right away when I need something and what it is . . . “No.” I interrupt. “While I agree that we need to talk about my role and behavior as a patient later, that is not what this question is about. First we need to talk about you as a caregiver. What do you plan on doing as a caregiver? What are you expecting of yourself as my caregiver?” Now we have the pause I had anticipated, as the response to the actual question forms.

He said a lot of really important stuff, you know, like going with me to appointments (I don’t really think that’s necessary, but whatever) and making sure I’m comfortable when it matters, making sure I eat, rest, take my meds, do what the doctors tell me to, and just generally making sure that I am doing ok dealing with the side effects and stuff, and being there in case something goes wrong and we have to call the doctor or take a trip to the hospital. I tell ya, this was just tearing my heart out to hear these as the only things he saw as his responsibility in this thing, that it was so sterile and lacking in recognition of what may be the most important thing of all, emotional support. But I managed to swallow it down to reply to him downright calmly . . .

“Those are all good and important things, but I’m even more worried now, because what my mom and lots of people are telling me, is that I just need good emotional support, and with that I’ll get through the rest just fine.” My voice starts doing that wavery I’m-really-scared-and-can’t-quite-control-my-voice thing . . . “But the one thing that seems to be completely lacking in this relationship is emotional support. I’m really trying to be a good patient and be thoughtful of your needs as a caregiver and needing time for yourself as well, and I figured today the unexpected excommunicated afternoon of yard work was in some part your way of dealing with the stress of what you’re facing tomorrow and this week.” He nodded to that, said something in agreement that kind of sounded like he hadn’t thought about it like that but he realized it was at least in part true. But there’s more to be said, and here come the damn tears . . . “And I am just an emotional WRECK right now.” “I really needed to NOT be alone today, but you took off, even after knowing something was wrong even if you weren’t sure what it was, you still left me alone on the floor to deal with it on my own, and that was why I left. And the sad part is that you could have defused the entire situation with just a few words before anything ever happened. And that’s where your learning how to deal with me will help us tremendously, if you want to learn it.”

And then, this kind of shocked me, we got into a good healthy discussion about that, as well as the question of what I know of what I am like as a patient (from having mom try to take care of me when I’ve been sick before) and how he can deal with me during the times when I’m being difficult. Let’s face it, I know how difficult and belligerent I can be, but I also know how someone can defuse that or take action to redirect it and get me to do what they know they need me to do for my own good. I mean, come on, I’ve been dealing with me for over 30 years. If I can’t tell him how to do it, certainly no one else can!

He had come around the table while we were talking, and we hugged and he held me a while, and we talked some more, standing in the kitchen, and I jumped up on the counter and he still held me while we kept talking, and it all went everywhere it needed to without degrading into the defensiveness that has frightened me off from telling him so many things that were bothering me in the past.

Then we got the bathroom scrubbed up to make sure there isn’t any uck bacteria that’s going to get me sick with my weakened chemo immune system, and he came in my office to lie on the LoveSac chair-couch-thing while I let myself have a little reward mint chocolate chip ice cream. He thought he wasn’t going to be able to relax to sleep tonight because he’d slept late this morning, and, well, there’s a lot on our minds. I sat with him a little and pet his hair and just, you know, gave him some love just like I’d done for Mizzou this afternoon, and he gets completely relaxed and says, “well, maybe I could fall asleep.” I’m still soothing his hair, and his eyes close again. “Yeah, I can definitely go to sleep. Time for bed.”

So, even though things between us are totally fine now and I have no real worries about my caregiver right now, I’m still nervous about tomorrow and what my body is going to feel like, and that’s still blocking me from sleep. After an hour or so of trying to Sudoku I finally whispered to Mark that I couldn’t sleep and I was going to go back to my office so he could sleep. He wanted to know that I was OK, and I really sincerely was, but unfortunately here I am five hours later (wow: have Internet, will kill time) still awake. But at least yawning. Let’s hope getting in the bed will do the rest. Then again, I can always sleep all afternoon after chemo, if that’s what my body needs. I am so relieved I took medical leave from work for this. My brain is past fried and in the region of next to useless, from what I can tell right now.