Starting this week with being denied chemotherapy was, honestly, rather difficult for me. Although having another week of recovery is nice, there were fears to be faced. My body gets an additional week to strengthen, but the cancer cells also get a reprieve... I can only hope that the scales balance in my favor. And there is little I can outwardly do to increase my bodies ability to be up for the treatment again next week. This lack of control in the situation makes me uneasy. Added to this is the fact that there is not a lot of structure in my daily routine. The two-week chemo schedule was the only structure that I really planned around. And having that one solidity taken away required some mental readjusting.
On a daily basis, I try to keep a rather zen attitude. I listen to and attend to my body's needs first. If there's nothing that needs tending, then I ask myself "what can I do now" or "what do I wish to do now," or some combination of the two. If I don't get to something in a day, or cannot finish a project, then I allow that to be acceptable. There's a sense of fluidity that I attempt to maintain from hour to hour and day to day. And I am getting rather good at being present in whatever I am doing in the moment. There is much less internal judgement now. I used to carry lots of mental measuring sticks and was always coming upon them in everything I did or thought about doing. And it often made me see a rather poor presentation of myself. I realized how futile all those sticks were when held up against the ultimate criterion of life versus death. Because that is the whole of your thinking when first faced with cancer.
All we have is what we have already done and what we do today. There is no promise of tomorrow. Lack of attachment, in the Buddhist tradition, is really about bringing you to the present moment. Yesterday, even two minutes ago, is gone and you cannot reach back to change it. Tomorrow is a dream, a hope, but not a given. Although this can appear dismal, and can be argued in both a positive or negative frame philosophically, I sense it as rather freeing. It has helped me discard judgement and expectation, unshackling my psyche, and providing more space for ease and happiness. This moment is my choice. Only mine. That is an empowering revelation. -I- can choose... right now... I am the only one in control of myself and my actions. I can sometimes choose to give that choice away, or to make a choice that assuages others, or to not make a choice and simply flow with the circumstance. But the responsibility ultimately lies only within me. My reaction to the consequences of those choices is also a personal decision. So, a question for each of us is, what attitude do you choose to affect? I choose happy, positivity.
This perspective has ushered in even more felicitous insights. I have found that any given moment can feel like an indulgence if you let your mind and body loll about in the senses of it. For someone of such a sensual nature as myself, this was an amazing discovery. I sort of recognized the possibility before, but didn't understand how complete it could be. I now allow myself to fully revel in many moments every day. It helps to make each day feel special. It turns the simple into something more divine. And sometimes, like earlier this week when I had to bring my mind back across to the sunny side of the street, it makes the work easier.
So today has been up and down. I awoke hungry and found deep satisfaction in satisfying that need. Then there was back pain, and I accepted it and tended to my body. Today flows with hunger, music, tiredness, satisfaction, disorder, sunbeams, contemplation. Each moment worthy and true. I float with the rhythm of the day and am content.
Tuesday, August 28, 2012
Went in for this week's chemotherapy and was turned away. This morning's blood work shows that my WBC counts are in the red zone and are too low for them to risk giving me treatment this week. I asked if the cold was affecting this, and was told that being on the antibiotics and fighting a cold should have boosted my WBC count, not lowered it. This is a result of ongoing chemotherapy and is not all that uncommon. It has been two months of poisoning, and my body just isn't ready to handle more yet. I don't feel any worse or different than I normally do at this stage of things, and that's not unusual either. This just means that my immune system is almost non-existent right now. And I was told not to have any visitors that are sick or potentially think they might be sick. So back to hermitage, taking it easy and getting as much rest as possible.
There is a shot (neupogen) they can give me that will artificially increase my WBC count. They could choose to do that this week, and then be more certain that I would be up for treatment next week. I'm now scheduled in for chemo again next Thursday (Sept 6). The problem with the neupogen shot, however, is that it can have its own set of lovely side effects such as muscle and bone aches, headaches, and reaction/tenderness around the injection site, amongst others. And apparently it is a drug that is often a hassle getting covered by health insurance. I didn't hear back from my oncologist today, so I don't know where the choice on this stands.
I was very discouraged when they sent me home this afternoon. After all, I'm on the fast track to kicking cancer's ass through whatever means necessary. This road block is not a stop I want to make on the journey. I wish my body could be as strong as my will.
Luckily, my afternoon ride was able to come early to get me back home. After a wee bit of wallowing at the house, I took myself out for a late lunch at my favorite restaurant. Then sat outside one of my favorite coffee houses in town with a nice cappuccino and an excellent book. Followed that up with a long nap. I awoke feeling like I had sidestepped the depression that had been hovering, waiting for its opportunity to get a foot in my mental door. After all, this ended up being a much nicer day than one spent hooked up to chemo all afternoon. And I have another week of feeling pretty good ahead of me instead of the post-chemo days of uselessness. I'm certain one week's delay will not derail my ass-kicking plan.
Serendipity is a beautiful thing. I am just wrapping this up when what song starts playing in the background but Don't Give Up by Peter Gabriel (feat. Kate Bush).
Couldn't say it better myself. Thank you Peter for bringing the first true smile to me today.
Saturday, August 25, 2012
Well... definitely in the full throes of this cold. We've passed into the coughing stage now, which only irritates my throat all over again. Must admit that I was hoping to wake up this morning and feel right as rain. Of course since that didn't happen, it's another fruitless day around the old homestead. I'm just trying not to sulk to extremity. The original plan was to be in Canada for a pool party. But phlegm is about as appealing in a pool as piss; so I am depriving friends of my presence and plague. Instead I've been indulging in moody music while futzing about the house. Did a fairly good job of distracting myself last night. Lazy, but tasty, take-out shawarma for dinner along with movies and a card game. This evening is looking like mani/pedi night with a couple of Coen films. That should use up my time nicely. The only question is do I start with the horrifying or the hilarious film-wise? Which note do I want to end the evening with?
Being cooped up is not a situation I deal well with. I defiantly took a walk yesterday for a little over an hour. Got three plus miles in and was careful not to press myself too hard. It was a lovely day though and it felt good to be out and about for a short time. I stopped and took a few pictures along the way, including this bird nest I happened to glimpse in a field off the path. Since the cold is a little more fierce today, I've been making the 'smart' decision to stay in and try to take it easy. Of course I'm optimistic that I'll wake up tomorrow and feel better. We'll see how that works out. After all, o' brother, this is no country for old sulkers.
Thursday, August 23, 2012
Somehow I have contracted a summer cold. It started with a mild sensation in my throat Tuesday, which became a full-on sore throat Wednesday morning. The kind that feels like someone has scrubbed your throat raw. But no fever, congestion or other symptoms. Of course my white blood cell (WBC) counts are pretty tanked right now after two months of chemotherapy. And the doctor and nurses have all told me to call if there is any sign of fever or infection. Apparently infection is a 'super bad thing' for someone on chemo and with counts like mine. I swear the medical community tries to scare you into submission. They keep saying that a fever one day could mean ICU the next. Sheesh!, a bit over dramatic. So I dutifully called Wednesday morning and informed them that I had a sore throat. They had me come in for bloodwork and to meet with a nurse. My WBC counts are actually higher this week than last (go me!). But they decided to put me on antibiotics just as a preventative measure. My throat does feel somewhat better today, but now my nose is running. So hopefully this will run its course quickly and I'll be past it by the time I go back for chemo next week.
The frustrating thing about it is that this is my off chemo week, and I'm supposed to be able to do what I want and be feeling nothing but better every day that goes by. I don't like kinks being thrown in my perfectly laid plans. This whole disease experience is making it difficult to hold on to the mindset that I have mental omnipotence over my body. I've continued to hold to the youthful conviction that things like sleep and sickness are merely speed bumps on the way to living and accomplishing and having fun. The kind of speed bumps that you don't really have to slow down that much for, maybe downshift a gear or merely take your foot off the gas for a moment. Why would I waste brake lights and time on such inconsequential items? But apparently cancer is here to teach me a new solid life lesson about body/mind dynamics. (Damn that cancer and its high-minded moralistic attitude!)
Some of you may think that being handed a 'sit on the couch and veg' card is pretty cool. But that card has been getting a lot of use over the last few months, and I'm tired of being tired and veg'ing. I want to kick around and do stuff and go places and dance. I want to run myself ragged in the name of fun, mischief and debauchery. That's difficult to do when you start ragged. So I wait. Not yet patiently; but I wait with a shadow of something like patience. And with a wicked Cheshire Cat-like grin in my mind, envisioning the mayhem of good times that are sure to come.
Tuesday, August 21, 2012
Got up way too early this morning to meet my oncologist and get the results from my most recent MRI. My body has resumed its natural schedule of midnight to nine (or later) for sleeping. Coupled with more insomnia last night (I was a little angry at the world), and I'd forgotten how hard it is to be up and at 'em for eight a.m. I'm sympathizing with most of my friends and family who work the typical eight to five work shift; but I certainly do not miss that schedule. I know you're all shivering in antici....pation for the grand results, and they are... goose egg! As I predicted, the MRI showed nothing going on in my back. Specifically, the first result said that there is no sign of metastatic disease in the spine. So this is super good news and now we know. My doctors weren't concerned with this yet, as progression into the bones would be a larger concern if way in the future there is recurrence. But as we all know I'm going to kick this the first time around, that's not something I'm worried about now.
After returning home and deciding not to eat an entire half of the Zingerman's chocolate chunk sourdough loaf I picked up for half price, but rather only consuming three slices and some healthy leftovers for breakfast, I was going to take a nice long walk on this warm sunny day. There is this wonderful thing called the Midwest Collaborative for Library Services that allows you to check out books through various virtual means such as for your Kindle or Nook, or even audio books. I thought the audio version of a Christopher Moore book would be a nice companion for my stroll, but alas the internets and my computer have given me a bugger of a time allowing me to access it. Downloading it from the online library was a cinch, log in and two minutes later, voila! Getting the security upgrades I needed for OverDrive was just not happening however. Finally found a forum that solved my issue and am now waiting for the transfer to finish to my phone. I was hoping to take a long walk without time constraints, want to see what I can handle and start walking daily again. And though I know that an hour's ramble will be more than adequate for my goal today, I just hate being limited by the clock.
Fortunately, Moore is assured to make me laugh while I perambulate, and I'll be following up by meeting some friends for assuredly good conversation. Perhaps not the most productive day, but spending the rest of the afternoon in the sunshine will certainly be a soul soother.
Saturday, August 18, 2012
Barring some insomnia last night, there are just good things to report this post. Yesterday was another nap-py day, and today has been absolutely lovely. I feel like I've missed a lot of the summer season this year. Haven't been up for good road trips or any camping; most of June and half of July were spent convalescing indoors. But today was one of those not-too-warm summer days and I spent most of it out and about. It's always a good Saturday that starts with a morning trip to the farmer's market. Everything is hitting it's peak now and the selection is wide and wonderful. Two stuffed bags of vegetables and fresh eggs later and we're off for a mini breakfast road trip. Barely home before off again for art and music at the library with a girlfriend. We learned how to make origami roses, played with the tutus in an empty room set up for ballet storytime, checked out the mini trapeze, sang along to some Art and Garfunkel, and roamed the exhibits. Of course by then it is teatime. Two pots of tea shared with two great friends. Then home to turn the market bounty into a tasty dinner. Now there is blues playing on the stereo and I'm ready to rest my back and get some good rest. A nice normal day... these are the ones I've been looking forward to.
Thursday, August 16, 2012
It's been a pretty quiet couple of days, which has given me a terrific opportunity to continue my practice towards becoming the Queen of Napping. The fatigue has really hit me hard this treatment and it seems like I'm just moving from nap to nap to bedtime. And making sure that I eat something in between occasionally. Lack of appetite the first couple of days after chemo has been something I've had to watch carefully. I don't actually feel hungry much, though I do recognize that my body needs food. So I'm typically just eating when I know it is the proper time to eat, and trying to make sure that happens at least twice each day. By the fourth post-chemo day my appetite is just about back to normal. And I ate a very full dinner this evening without feeling at all nauseous or overstuffed.
Many of you have heard me say that I have found the only true no-exercise-diet-plan out there. Systematic poisoning has to be a bitch to market however. I know some of those 'miracle' pills out there can be pretty hazardous, but chemo is taking it to a whole other level. Since cooking is one of my favorite hobbies, I've dabbled enough in nutrition to know how to keep everything pretty balanced. I've been keeping within a tight three pound 'bounce' from week to week. Down a little on chemo weeks, but then back up again on the off-week. It's kind of nice on off-weeks to really eat about anything I want. Everything in moderation though, so it's mostly stuffing myself with extra grains, a bit of cheese on everything, and never saying no to dessert.
I've made it through four treatments, almost two full months now. And I feel like I've settled into the rhythm of this stage. Every week is a little different though, so it is still a day-by-day process. But there is some consistency, and every day past 'chemo Tuesdays' is a day I feel a little better. So, here's to the upswing! Think I'll celebrate with some sleeping.
Tuesday, August 14, 2012
2:30 p.m. - Today you get real time, live blogging from the chemo treatment room. Got to the center a little before 11 a.m. this morning and finally made it upstairs for the chemo. The initial wooziness from the Atavin has worn off a bit. We are about a third of the way through the two hour Oxaliplatin and Leucovorin infusion. Drips about once a second for one, and twice a second for the other. (exciting stuff, eh?) Here is me hooked up, and my infusion bags.
The terrific thing about having an implanted portacath is that I don't have to worry about how the chemo drugs will affect my veins. Two of my drugs are strong vesicants which can create chemical burns if they get on the skin, and can also weaken and collapse the veins themselves. This also puts me one implant closer to the cyborg singularity. I'm a good three steps ahead of most of you and therefore expect to be beloved by our new overlords when the time arrives. I would like to be called 8 of 14 when they've completed my assimilation. And I'd prefer my spandex a deep plum color.
3:10 p.m. - Bored. That's a majority of the time here in treatment. Stuck sitting here hooked up for 3-4 hours. The treatment chairs are all pretty tight together and that means it is often too loud and busy with family and visitors to read well. Or to read anything with substance, which is what I brought along today. But I also brought the laptop for the first time. Been catching up on email and FB. Will likely be watching movie trailers soon. I should have warned you from the beginning about the lack of excitement that this live blogging session would entail.
3:30 p.m. - Look what I can do with my web cam photo: (yep, that's the boredom stage we've hit)
Found out you can get Jimmy Johns delivered right to your treatment chair. Not the best lunch option, but delivery is certainly a perk when you don't have a minion on hand to run errands for you. And their oatmeal raisin cookie is good. Since I don't typically feel up to eating much post-chemo for a couple days, it's good to get as much food in me as possible beforehand and during. And since I'm freshly dosed up with three different anti-nausea drugs, my tummy feels great for noshing.
4:00 p.m. - I can see the sun outside just over my shoulder. This would have been a good day to go walk at the nature center. Too bad I wasn't given a choice... cake or death? Unless you're building an immunity to iocane powder, who is going to pick the poison option? Though in my medical case, cake = treatment and death, well it's just always death. Guess I am picking my poison. I hate when logic leads me back around to the less preferred case.
4:15 p.m. - The long hang is over. Now getting the bolus (bow-lus), aka 'push' of 5-FU before they bring out my pump for the rest of the 5-FU from now through Thursday. My ride is on her way and then we'll be done for this time around.
And that's my pump. Now to pack up everything and head home for naptime! Thanks for joining me in this less than exciting live blog adventure. Two weeks from now, same bat time, same bat channel kids.
Sunday, August 12, 2012
The meaning of life is a complexity, a myriad mix of elements. I believe that one of the largest pieces of that puzzle is the people with whom you surround yourself. The relationships, the memories, the good times... we live on in those who remember and love us. I feel inordinately blessed with good people in my life, nay - terrific, amazing people. I had the good fortune to spend a couple of days with my sister and her husband this week. Days and evenings full of coziness, laughs, good food, sincere comfort. I found the opportunity to have two awesome conversations with one of my oldest friends in those days as well. Upon arriving home there was time for a quick nap before being heading off to one of my best girlfriend's home for a fantastic surf and turf dinner. Two sweet friends from Minneapolis were there as well, making a stop in town just to visit. Food, wine, stories and laughs took us late into the evening. Met back up with them today for a tasty brunch at one of my favorite restaurants with two more very close friends. Then off to a delightful film with two more of my best girlfriends. Five days full of good people and lovely times. It was very rejuvenating.
I am so tremendously lucky to have friends and family that make life delightful. When the shit hit the fan this winter, the rallying of support, help and love from them was truly awe-inspiring. There may be a lot of bad things going on this year, but overall my peeps have helped make this one of my best years as well. There are no thanks I can give that will equal what they've given to me. The best I can do is give love and smiles galore in the years to come while we make many new memories. Every day is another opportunity for this payback... if that's not a formula for a life with meaning, then I don't know what is.
Friday, August 10, 2012
Things we've learned about ourselves these last two days: two and a half hours is pretty much my maximum car 'butt exposure' time; I'm pretty excited about the idea of being an aunt; good company and conversation makes for a very wired brain; wired brains do not make good sleep. Visiting my sister for a couple of days this week. It's especially nice to be out of the house for a while, and I really enjoy the mellow, calming energy that their house holds. They recently upgraded their mattress set which means I get a king size bed to lounge and spread out on. I have an odd obsession about taking up as much of a king size bed as I possibly can, which is difficult when you are wee; there's lots of diagonal stretching and posing that occurs.
Been feeling pretty good the last couple of days. I'm on the upswing to my best before another treatment next Tuesday. Looking forward to a couple more mellow days visiting... even though I have time for leisure at home on a daily basis, there's something different and even more leisurely about hanging out at someone else's home. All the little things that you take care of in your own space aren't yours to be concerned about. It kind of feels like a mini vacation.
Not much more to report for now. And my mind is doing that 'rush around in five different directions' thing. Having one of those moods where I wish there were far more space in a 24/7 day so that I had the time, or could simultaneously attend to both books on my mind, three movies that I want to revisit, more good conversation and laughs, getting to work on new craft project ideas, and the time/space for proper lounging about with nothing but good music to really sink into. Where's my magical time machine when I need it? Think I'll head off to one of those books for a bit.
Tuesday, August 7, 2012
Met with my surgeon again today so he could prod my butt and see how things are healing. He's still pretty happy with the progress and seems to think things are patching up well. The best part about this doctor visit, however, was that I drove myself. I am officially mobile again, which feels fantastic. Don't think I could do more than tool around town yet, but it's a lovely level of self-sufficiency to have back again. Go progress!
The week had been going really well until another chemo side effect decided to kick in earlier this evening: diarrhea. I was really hoping to skip it in this round of chemo treatment, but no such luck. Let me just tell you, in case you were thinking of trying this at home, diarrhea and nausea do not make a fun combo. Definitely a match to skip when given the chance. A couple rounds of that and a nice long nap was in order. Feeling much better now, but still a bit tired out. Also lacking in inspiration for this post... so short and sweet it is this time around.
Sunday, August 5, 2012
It's pretty easy in regular moments to self-delude myself into thinking that things are pretty normal. There are a lot of everyday things that I can handle, and there are more good moments than bad. The bad ones catch up, however, with a magnitude of suck. I'll be going along doing something like chopping vegetables for dinner, listening to music and thinking the world is pretty right. Go to grab something out of the fridge and the burning pins and needles reminds me that something is not so normal. Or that things are now the 'new normal' which is "situation normal, all fucked up." It's a too strong goose to the ass, or more like a sharp towel snap from the bully in P.E.
Yesterday one of my girlfriends picked me up for an early day outing. We shopped the farmer's market and then headed to Bell's for a small art show/fair. It was a lovely morning, sunny and a little warm with good conversation. We're outside in the biergarten chatting away when all of a sudden I got really dizzy. Not quite falling down dizzy, but enough that I was worried. I had to pause us and head inside to sit down. No idea what brought it on: I'd eaten and blood sugar was good, I didn't feel overtly warm, we hadn't been too active, I'd just had a glass of water, I should have been fine but wasn't. I chalked it up to a cancer ass goose, but it bothered me because I was being normal and having a good time... I'd chosen to forget for a little while. It's these moments that are the most frustrating. Especially the tiny little twinges while I'm doing something else, like a suddenly stiffened hand in front of a cold air vent, a butt pang that ruins my comfortable perch, random belly cramps. This is now my normal, but obviously my brain has yet to come to full terms.
I'm not delusional enough to even consider thoughts like 'turning back the clock,' or 'if this never happened.' But I do think about how nice it will be when I'm fully recovered and past the shitty stage. It will be terrific to not consider every decision or worry about what happens next. Again with the patience... and still I am not so good at it.
Friday, August 3, 2012
The majority of my friends are all on vacation together right now, camping in Pennsylvania. This is a regular summer ritual that I am missing out on this year. They are there sitting outside their pavilions getting ready for wine-thirty and afternoon noshing. Or taking an afternoon shower to take off the sweat of the day and cracking open that first cold beer. It's that lovely time in the afternoon for lounging, napping, or casual shopping. Maybe setting out to visit friends in another camp and contemplating dinner plans. It is hours before the parties start, and there is plenty of time to just chill in the shade. It will still be hot, but beginning to cool slightly and hopefully an afternoon breeze. I miss it... and I know exactly what I'm missing. I can clearly hear the flapping of Atenveldt's multitude of banners; I can feel the thin film of sweat on my neck; I can smell the incense blowing from someone's tent; I can taste the crispness of a cold white wine; I can close my eyes and see the way the sun lights the inside of my eyelids orange.
The hard thing is that I feel almost good enough to be there. Logically I know that my white blood cell count is too low to take a chance of camping, especially with some nights expected in the low 60's. And I'm certainly not physically up for the miles of walking every day, much less the expansive debauchery of the evening hours. I would be the one heading to bed at o'dark thirty and napping through the best parts of the days. But my mind is absolutely up for the trip. This will be the first summer in 15 years that I haven't done some camping. If my backyard was bigger (and not backed up to a major intersection), I swear I would put the pavilion up and camp out for a night or two. Of course it wouldn't be nearly as much fun without all my friends around.
So I'm being lame and tracking pictures and updates on Facebook. Hoping that everyone is having a terrific time and not melting into sweat pools. I'll have a fine time this weekend and take advantage of some of the great things that are always happening in Kalamazoo. There's the art fair at Bell's brewery tomorrow, an afternoon concert at the nature center on Sunday, the pool hall and ice cream stands are open, there's live music downtown every weekend, and the farmer's market will be bustling in the morning. All in all though, I'd rather be sweating with my friends under a shade fly. You guys better be having a great time, and make sure to raise a glass for me.
Wednesday, August 1, 2012
Tired. That is the largest side effect of the chemo each treatment. I went to bed early, only woke up once in the night, slept late, and have taken both a one and half hour nap and a one hour nap. I just got up from the second one and could easily just get to bed. But I'm sure you are all waiting with bated breath to know how this week's treatment is treating me, and I wouldn't want to let my fan base down. Other than wiped out even more there aren't any new effects that I've noticed this time around. The neuropathy is back in full force but I'm prepared for that each time now. The pump starts to annoy me after about 24 hours, so the gods know how I put up with it for five days every week this past spring.
My mom is in town this week to help around the house and chauffeur me to appointments. My house will be clean as a whistle by the time she leaves and I am not allowed to wash a single dish while she is around. Since just sitting around tires me out right now, this is just fine by me. My big effort for the day was painting my nails. Though it felt like quite an accomplishment to be able to reach and do my own toenails again. By the time sock season rolls around I should be back in business. Another sign of progress in recovery is that I've moved on from the reclining lift chair. Before I came home from the hospital we made sure to have a lift chair delivered for me to use. I knew there was no good supportive furniture for me in the house. The sofa is too low and doesn't have the arm supports I needed to lift and lower myself well. The papasan chair was all sorts of not a good idea. And the only other chairs were the dining room table ones. So I've been renting the lift chair for two months. They picked it up Monday afternoon and I'm able to lounge relatively comfortably in the papasan again. My butt doesn't need as much support as it used to and range of motion is wide enough for me to sit in a multitude of positions again. Little signs of normalcy make each day better. It's encouraging, and I know that it will all get better if I just wait with patience.