I had the worst acupuncture of my life today. If good acupuncture can unblock your qi, my qi is trapped in a dungeon right now. The hospital I get treated at kept saying they were building an acupuncture room and were going to offer it for free, yippee... yip no! They told me they'd hired someone and did I want an appointment, hell yes. So I went today and turns out the room isn't done so they stuck me in a chemo chair in the bright, noisy ward and I'm sorry to generalize, but the distance in finesse between eastern and western trained acupuncturists is more than an ocean.
This woman who mentioned "her partner" more times than I can count and went on and on about her perfect job and perfect life and taking her two dogs to work with her and running on the beach with them, blah, blah, you're gay, big deal and thank you for sharing the details of your perfect life with me while I'm here for some relief from chemo and my perfect-life threatening disease. Ugh. Then she jabbed some needles in me and left.
I spent the next 10 minutes? 20 minutes? I don't know, however long I was in the chair screaming in my head, I almost pulled the needles out myself and ran for it. And then I realized the absurdity of being in a chemo chair on a non-chemo day, that is just wrong and I did it to myself. I fantasized about Dr. Xu the acupuncturist I've been seeing at the other hospital coming to rescue me. Transporting me to her warm little room where she silently moves around the table like a graceful jaguar inserting needles here and there that I don't even notice, as if she's been doing it since birth. Making sure I'm comfy, cozy and warm before turning out the lights and turning on the nice soft asian music. Her broken english pep talks, I'm coming back Dr. Xu, you're a great deal and free was too good to be true.
This whole day just sucked. J had a horrible dentist appointment which put him over the edge, so we had hours of drama and misery, I finally curled up on the couch with a blanket over my head, sometimes you just don't know what to do. It was mostly blood sugar, I know this, the post-school dental appointment deprived him of the afterschool, snack, meal, snack ritual. But my boy has a flair for the dramatic, so it was the worst day of his life, then the worst year, January, November, and October were the worst year of his life and he was so hungry, he could never eat again. Finally I persuaded him to have a smoothie, "but NO paper umbrella." So he took and hid my paper umbrella stash and that made him feel better and as soon as he drank, his blood sugar rose and there was finally peace in the kingdom. I can't wait to go to sleep and start a new day tomorrow, some days can't be rescued and this was one of them.
Wednesday, May 9, 2012
Tuesday, May 8, 2012
Purged
I can't believe that yesterday was only yesterday, it feels a world away. I muddled through the evening, not getting out of the hospital until 4p.m., but when I took J to bed all hell broke loose. I had to kick the poor kid out of the bathroom to make room for me, and ultimately shouted, "get me a trash bag from the kitchen, quick". Just in the nick of time the plastic bag flew in the door and between heaves I shouted, "Griffin, call your dad, tell him to come pick you guys up." But his dad's phone wasn't working, he'd answer but not hear anything, so J got my phone and from my bathroom office I tried calling. I hoped that seeing all the caller IDs from us would translate to S.O.S. and it mercifully did. He came and got them and after about an hour in my new office, I climbed into bed. Had a good nights sleep and feel better today than I have in ages.
The chemo I had yesterday isn't supposed to make you sick, so maybe it wasn't that. My stomach had been hurting all week and maybe my body just wisely decided it was time for a purge. Out with the toxins, in with the new. So I'm cleansed and I feel worlds better. Got a fair bit done today and am now lounging in bed typing this with J playing on my iPad with his head on my shoulder. Poor little dude was kind of shaken up last night, but he continues to be amazingly resilient, I think we all do. Yay for us.
The chemo I had yesterday isn't supposed to make you sick, so maybe it wasn't that. My stomach had been hurting all week and maybe my body just wisely decided it was time for a purge. Out with the toxins, in with the new. So I'm cleansed and I feel worlds better. Got a fair bit done today and am now lounging in bed typing this with J playing on my iPad with his head on my shoulder. Poor little dude was kind of shaken up last night, but he continues to be amazingly resilient, I think we all do. Yay for us.
Monday, May 7, 2012
Manifest Destiny
You would think I could make an 11:40 chemo appointment with no problem. Sadly, no, not when you keep falling asleep and falling asleep and the clock doesn’t stand still like you’ve convinced yourself it’s going to. I drove here today because I wanted my laptop with me which felt like it weighed 80 lbs. while I was toting it home last week. Warning boys and girls, writing can be addictive. It’s a beautiful warm day, but I know that it’s always freezing in the chemo bay, so I didn’t want to lug a coat with me too, while walking. I don’t know why I call it the chemo “bay”, maybe it reminds me of sick bay on the Enterprise, or the starship of your choice.
I was running a few minutes late, but I really wanted to stop at my local spot and get a berry muffin and ginger tea. I’ll be here for hours and I can’t eat the crackers they offer, chemo robs you of your saliva. I don’t know how I became a punctuality nazi, but I’m always on time or early and I was having heart palpitations over being five minutes late which is insane. They’re never running on time here, but I imagine everyone dropping everything at 11:41 and declaring Kim Clark is late, her appointment is cancelled and we’re putting a red flag in her file. In the real world, it’s 12:18 and I’m still sitting here waiting for them. I don’t know why I stress over the dumbest things, gotta work on that.
I’ve asked the nurse to contact my doctor or any doctor to see if they’ll dose down the benadryl and steroids, I’m trying to be a better advocate for myself. Things are chaotic today, I’m not even in my usual wing, with usual nurses, apparently there was an emergency earlier which threw everything off. The level of chaos is a little unnerving. It’s strange being in a place that looks the same as I’m used to but isn’t... the fridge isn’t where it should be or the bathroom, on the upside, the little rooms are bigger and the chairs are all new. I had the same exact experience yesterday when Jonah and I went to see the Pirate movie from the {revered}, Aardman Studios of Wallace & Grommet fame. J doesn’t like to go to the movies, too big, too real, too loud, he prefers to wait for video, but he’s been counting down the days until this came out for months and of course, movie theater popcorn is an additional draw. We were so busy talking when we left, we exited the back of the theater instead of the front and just stood there, both of us, entirely perplexed. It looked like the same parking lot, the same, but different. We turned in circles for a few minutes until we figured out what we’d done, but for a moment it was like we’d arrived in a parallel universe.
Agh, back to real time, the nurse has accessed my port, but can’t get a blood draw. Ewww, I shouldn’t have looked, I’m very good at not looking, but it was taking so long. Maybe now that I know how much a bag of blood costs on the open market, mine doesn’t want to leave my body for fear of needing to be replaced.
O,K., phew, that’s done, but it’s 1:00 and I’m still not hooked up to my drugs. Definitely not making it to the bus stop, and grateful to the nearby family{s} that will take J home with them. G has a baseball game today and I haven’t been to a single one. I feel bad about that, I missed his whole basketball season and now baseball too, I need to get to a game, I’m used to going to all of his games. Weekly chemo seems oppressively often.
I’ve been pondering this cancer thing and realized that I don’t know how to refer to myself. I have cancer, I had cancer, I don’t know which and I’m starting to think I won’t ever know and that’s unsettling. I’ve done chemo and the whole tumor and then some was removed and so possibly I’m cancer free at this very moment. This chemo may be an insurance policy to make sure, to track down and zap and stray cells floating in my bloodstream looking to set up an outpost. The wanderers, the adventurers, the just plain dumb and lost and wandered off from the pack. I suppose the difference between having cancer and being recovered from cancer, will at some point be nothing more than a choice in perspective. I don’t like that, I like empirical evidence, data, I want a declaration of certainty, a certificate, but you don’t always get what you want which is too damned bad and you have to learn to adjust.
I was running a few minutes late, but I really wanted to stop at my local spot and get a berry muffin and ginger tea. I’ll be here for hours and I can’t eat the crackers they offer, chemo robs you of your saliva. I don’t know how I became a punctuality nazi, but I’m always on time or early and I was having heart palpitations over being five minutes late which is insane. They’re never running on time here, but I imagine everyone dropping everything at 11:41 and declaring Kim Clark is late, her appointment is cancelled and we’re putting a red flag in her file. In the real world, it’s 12:18 and I’m still sitting here waiting for them. I don’t know why I stress over the dumbest things, gotta work on that.
I’ve asked the nurse to contact my doctor or any doctor to see if they’ll dose down the benadryl and steroids, I’m trying to be a better advocate for myself. Things are chaotic today, I’m not even in my usual wing, with usual nurses, apparently there was an emergency earlier which threw everything off. The level of chaos is a little unnerving. It’s strange being in a place that looks the same as I’m used to but isn’t... the fridge isn’t where it should be or the bathroom, on the upside, the little rooms are bigger and the chairs are all new. I had the same exact experience yesterday when Jonah and I went to see the Pirate movie from the {revered}, Aardman Studios of Wallace & Grommet fame. J doesn’t like to go to the movies, too big, too real, too loud, he prefers to wait for video, but he’s been counting down the days until this came out for months and of course, movie theater popcorn is an additional draw. We were so busy talking when we left, we exited the back of the theater instead of the front and just stood there, both of us, entirely perplexed. It looked like the same parking lot, the same, but different. We turned in circles for a few minutes until we figured out what we’d done, but for a moment it was like we’d arrived in a parallel universe.
Agh, back to real time, the nurse has accessed my port, but can’t get a blood draw. Ewww, I shouldn’t have looked, I’m very good at not looking, but it was taking so long. Maybe now that I know how much a bag of blood costs on the open market, mine doesn’t want to leave my body for fear of needing to be replaced.
O,K., phew, that’s done, but it’s 1:00 and I’m still not hooked up to my drugs. Definitely not making it to the bus stop, and grateful to the nearby family{s} that will take J home with them. G has a baseball game today and I haven’t been to a single one. I feel bad about that, I missed his whole basketball season and now baseball too, I need to get to a game, I’m used to going to all of his games. Weekly chemo seems oppressively often.
I’ve been pondering this cancer thing and realized that I don’t know how to refer to myself. I have cancer, I had cancer, I don’t know which and I’m starting to think I won’t ever know and that’s unsettling. I’ve done chemo and the whole tumor and then some was removed and so possibly I’m cancer free at this very moment. This chemo may be an insurance policy to make sure, to track down and zap and stray cells floating in my bloodstream looking to set up an outpost. The wanderers, the adventurers, the just plain dumb and lost and wandered off from the pack. I suppose the difference between having cancer and being recovered from cancer, will at some point be nothing more than a choice in perspective. I don’t like that, I like empirical evidence, data, I want a declaration of certainty, a certificate, but you don’t always get what you want which is too damned bad and you have to learn to adjust.
Friday, May 4, 2012
Enunciate
Say what you will about my boys, but they enunciate! Griffin barely spoke until he was three and then it was in clear, crisp sentences. Jonah, for a a scrawny little thing has always had a deep beautiful, resonating voice and put him on stage and there is no mumbling, no fumbling. I loved watching improv class this week. I've always been insecure about my voice, self-conscious and I wind up with these two, so beautiful to listen to.
Week one almost down, eleven to go, that number is intimidating. I felt lousy all week, very tired, misc. ailments, but I was semi functional. I left the house every day at least for a little bit. This time, last protocol, I was flat out in bed, I didn't leave the house for weeks at a time, so that's an improvement. They're giving me steroids with the chemo drugs and those don't agree with me one bit. Sometimes I just can't stop bouncing my legs or rubbing my hands together and dead tired as I am I can't sleep. When I do sleep I have nightmares, those real feeling dreams that leave you confused about what is and what isn't. I feel like I could use a really good nights sleep, not just more time in bed.
I'm taking a leap of faith and having my rep. show my work at the upcoming stationary show in NYC. It's a good fit for me, I think and I'm tired of passing up opportunities at the same time, afraid I won't be able to follow through. I lost my biggest account that I'd had such high hopes for and that scares me, I need at least a shred of momentum or I'm going to start panicking. Between now and then, it sets me up with quite a few projects which I don't know if I'll get done, but I'm scared of having nothing on the horizon. I've put so much work into my little biz and I don't know what I'd do if it fizzles away while I'm sleeping. I wasn't very employable five years ago and even less so now and my small savings aren't going to last forever especially when my insurance isn't covering "blood products" and who knows what else. I don't know if it's good or bad, putting renewed pressure on myself to be working, but I'm giving it a shot. Maybe the adrenaline rush of some new accounts will make me feel less dreary... I keep thinking the warmer weather will cure my malaise, but it will probably just make me sweat.
Week one almost down, eleven to go, that number is intimidating. I felt lousy all week, very tired, misc. ailments, but I was semi functional. I left the house every day at least for a little bit. This time, last protocol, I was flat out in bed, I didn't leave the house for weeks at a time, so that's an improvement. They're giving me steroids with the chemo drugs and those don't agree with me one bit. Sometimes I just can't stop bouncing my legs or rubbing my hands together and dead tired as I am I can't sleep. When I do sleep I have nightmares, those real feeling dreams that leave you confused about what is and what isn't. I feel like I could use a really good nights sleep, not just more time in bed.
I'm taking a leap of faith and having my rep. show my work at the upcoming stationary show in NYC. It's a good fit for me, I think and I'm tired of passing up opportunities at the same time, afraid I won't be able to follow through. I lost my biggest account that I'd had such high hopes for and that scares me, I need at least a shred of momentum or I'm going to start panicking. Between now and then, it sets me up with quite a few projects which I don't know if I'll get done, but I'm scared of having nothing on the horizon. I've put so much work into my little biz and I don't know what I'd do if it fizzles away while I'm sleeping. I wasn't very employable five years ago and even less so now and my small savings aren't going to last forever especially when my insurance isn't covering "blood products" and who knows what else. I don't know if it's good or bad, putting renewed pressure on myself to be working, but I'm giving it a shot. Maybe the adrenaline rush of some new accounts will make me feel less dreary... I keep thinking the warmer weather will cure my malaise, but it will probably just make me sweat.
Wednesday, May 2, 2012
Plans
I had plans for this part of my life, it's reasonable to have plans at 48. 48 Sounds so young when I see it typed out and before this, I was feeling old, silly me, 48 isn't old and this wasn't the plan.
Tuesday, May 1, 2012
Nine Key
Not a bad day. Slept until nine, which I've spelled out because my nine key isn't working. Beloved laptop on last legs, owner in denial, just like with the vehicle. I managed to pack a small order at the studio, pick up child with toothache at school, take 3 hour nap, and order a pizza for dinner. As I was brushing my teeth tonight, I noticed my face is bright red and now since I've seen it, I can feel it. Hope that's nothing bad.
What seems most affected is my brain. Very scrambled in the head I am. I don't remember yesterday. Bits and pieces, but not what anyone ate for dinner, or putting Jonah to bed, I think he slept with me, but I'm not sure. Don't really remember the whole afternoon and I keep saying things backwards and jumbled up. There were lots of dishes in the sink and leftover smoothies in the fridge, both green and kid-friendly fruit, so I must have had an energy burst and made them, but I have no recall. Even today seems a bit of a blur and about a week long. Last night I tossed and turned all night, but tonight I think I will sleep, I'm just that tired.
What seems most affected is my brain. Very scrambled in the head I am. I don't remember yesterday. Bits and pieces, but not what anyone ate for dinner, or putting Jonah to bed, I think he slept with me, but I'm not sure. Don't really remember the whole afternoon and I keep saying things backwards and jumbled up. There were lots of dishes in the sink and leftover smoothies in the fridge, both green and kid-friendly fruit, so I must have had an energy burst and made them, but I have no recall. Even today seems a bit of a blur and about a week long. Last night I tossed and turned all night, but tonight I think I will sleep, I'm just that tired.
Bouncy Balls
Last night I told the boys, that if I was feeling o.k. this Saturday we should go to Friday Night Live. They thought that was funny, so yeah, I guess my brain is a little scrambled. Scrambled like egg.
Aside from scrambled brain and some wooziness I feel fine today. Yesterday had it's moments, but all seems well. This new cocktail is accompanied by simultaneous Benedryl and steroids to ward off too common allergic reactions. They don't explain this stuff to you, they tell you about the main drugs, but not the supplementary drugs they're dripping in too. I am a girl who can't handle her Benedryl, I stopped taking it years ago, it wipes me out for days and causes depression. It's unlike me to be aware enough to make causal correlations, but the benedryl/depression thing became obvious and then I looked it up and it's not uncommon. A lot of moms with young babies, myself included, occasionally give baby-sized doses of Benedryl to our kids when they simply will not be soothed into sleep, and we are desperate. I wonder if all those little babies were depressed the next day.
An hour after lodging myself comfortable in the chemo chair I was nodding off despite how damned cold it always is in there. And then the steroids kicked in so I'm half asleep and bouncing around at the same time, my legs and feet couldn't stop, most literally. On the inside I felt like everything contained within my outer dermis had turned into super-charged, brightly colored, striped and polka-dotted, super balls bouncing frantically in every direction. Luckily it eventually passed and today I have only minor jitters and I hope things stay calm. Still, not happy about the Benedryl and steroids.
Otherwise I really do feel fine, I'm used to the dry mouth and hot on the outside, cold on the inside, tossing and turning all night long, but thus far, I feel quite manageable. I might just get to Friday Night Live on Friday. I'm going to shower and attempt some errands, this was not possible on day #2 of last cycle. Fingers are crossed.
Aside from scrambled brain and some wooziness I feel fine today. Yesterday had it's moments, but all seems well. This new cocktail is accompanied by simultaneous Benedryl and steroids to ward off too common allergic reactions. They don't explain this stuff to you, they tell you about the main drugs, but not the supplementary drugs they're dripping in too. I am a girl who can't handle her Benedryl, I stopped taking it years ago, it wipes me out for days and causes depression. It's unlike me to be aware enough to make causal correlations, but the benedryl/depression thing became obvious and then I looked it up and it's not uncommon. A lot of moms with young babies, myself included, occasionally give baby-sized doses of Benedryl to our kids when they simply will not be soothed into sleep, and we are desperate. I wonder if all those little babies were depressed the next day.
An hour after lodging myself comfortable in the chemo chair I was nodding off despite how damned cold it always is in there. And then the steroids kicked in so I'm half asleep and bouncing around at the same time, my legs and feet couldn't stop, most literally. On the inside I felt like everything contained within my outer dermis had turned into super-charged, brightly colored, striped and polka-dotted, super balls bouncing frantically in every direction. Luckily it eventually passed and today I have only minor jitters and I hope things stay calm. Still, not happy about the Benedryl and steroids.
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