Saturday, October 31, 2009
When Nathan gets sick, he gets very, very sick. He's had pneumonia more times than I can remember. A few years ago, when the children were stricken with a horrible influenza, Nathan was so sick, I actually took him to the doctor because I was worried. I'm not known for taking my kids to the doctor because I'm worried (and usually I wait too long). At that time, he couldn't sit up in the doctor's office. After every long, intense soccer tournament, Nathan gets sick. If he gets stressed, he shortly thereafter gets sick.
Aidan, on the other hand, has only once even been seen by a doctor when ill because he simply either doesn't get sick or he recovers quickly. When he was five months old, he was hospitalized with croup. At that time, the doctors told us to expect that he'd be in the hospital for 3-5 days. He was released within 14 hours, cough free. Since then, he's not ever been sick enough to warrant being seen by a doctor. When he gets colds, he has a runny nose for 3 days...maybe. That adage of a cold lasting 7 days or a week? Not Aidan's colds. Chicken Pox? He blew through the whole cycle in three, maybe four, days. And that was after multiple exposures to the virus. That horrible flu that laid Nathan out for nearly two weeks a few years ago, made Aidan sorta-miserable for 1.5 days. It was his first experience with a fever. He was 11? A vomiting flu that laid Tynan out for 3 days and Nathan for 3 days....Aidan vomited once and was lethargic for a day. Recently he missed two days of school for a stomach virus...and was perfectly fine on day three, where his brothers moved through it much more slowly...I think Nathan had symptoms for four days and Tynan off and on for longer than that.
Tynan, now, is a mixture of both brothers. He seems to come down with things rather easily, but doesn't stay down for long. However, at times, when he goes down, he goes down hard. He's my strep kid. Neither of the big boys has ever had strep, but Tynan had it multiple times when he was younger. There was one summer when he was sick with strep from May until July, I think. He also gets sinus infections (I'm so happy he's learned to neti, which has pretty much fixed that problem), and his infections linger, and linger, and linger....sometimes. He was the child with the perpetual infection one year....he missed 17 days of school because he kept spiking fevers and was never fever free for 48 hours (that was the year of flu...and the strain the kids had was contagious until fever free for 48 hours). Finally, the doctor ordered an MRI and culture and discovered a little, tiny pocket of sinus infection, that when cultured ended up being an "archaic" strain that responded best to old fashioned penicillin as opposed to the newer antibiotics. So he's a weird one, Tynan is.
Yesterday, the doctor declared that Tynan probably has H1N1, just through process of elimination. He did a rapid flu test, but those give false positives for H1N1 in over 50% of cases, so the negative result, in the face of his symptoms, probably isn't a true negative. Plus, he responded quickly to anti-virals. And he's up and down, down and up. Looks like a raccoon...very pale, very dark circles under his eyes. Incapacitating head aches. Then shortly after, feels OK. Ice cream seems to help.
We've been dosing him with vit. C, vit. D, oscillococcinum, and keeping him pretty much quarantined in the family room. He's not coughing too much. Fever comes and goes, but seems much lower today (I should probably take it at some point). I'm mostly avoiding him, and he me. He hasn't complained about aches today, and he's gotten some wonderful "Daddy time" since Lou is running interference for me.
So, he and I suck down our Tamiflu.
And that chemo brain? I collected essays yesterday and was really intending to get them all graded by Monday, Tuesday at the latest. I do round 5 on Wednesday, and although I don't feel sick until late Friday at the earliest after chemo, I don't focus so well with the steroids I'll start taking Tuesday and feel the effects of until some time Friday. Being cranked on steroids is NOT a good way to approach GSW 1100 essays. Focus is an issue, and one of the other side effects is irritability. I get irritated enough without drug enhanced irritability. 1100 student essays require a special sort of Zen. And my Zen goes far, far away within minutes of my first dose of Decadron. I normally handle Zen and the Art of 1100 Maintenance quite well lately. But not cranked on deccies....
Well, there's an example of chemo brain...I had no intention of writing about Decadron.
What I'd intended to say 120 or so words ago was that I have this stack of essays; I was intending to grade 20 or so today, tomorrow, Monday; I totally blanked on "sterilizing them" which is what I've been doing for several years now (and I've avoided getting sick for quite a few years, since I've started consciously avoiding student germs). So, now I'm two hours behind because I pop them in the over for at least two hours. It may not be a perfect solution, but I really have had fewer "student" illnesses since I've started collecting essays in a box/basket, baking them, and also not letting students use my textbooks (and avoiding touching their books and computers).
Drat. I had such great intentions. Double Drat. Two hours in the oven means I won't get to them before I have to start getting dressed for the Halloween party. I can't believe I totally forgot about this.
Friday, October 30, 2009
So, last round of chemo, I had a horrible time with what I thought was a worsening reaction to Neulasta. Apparently, while Neulasta can cause the type of pain I was experiencing, it's rare for it last as long as it has...basically, I'm still experiencing pain in my knees, hands, ankles, and hips. This is especially apparent when I drive and my ankles, knees, and hips ache and at night, when the pain in my hips and knees wakes me up and interferes with falling asleep.
At the same time, I'm having muscle pain and the sensation of weakness in my one arm, hand, and my legs. There is no weakness; it just feels like there should be weakness. I feel quite a bit of "muscle burn." For instance, while I've been walking quite a bit, I "feel the burn" even before I've gone far and even if I'm walking slowly. My right forearm constantly feels as if I've been squeezing a ball...it's tight, tired, and achy.
So, like all good patients, I called the oncologist, and apparently, her guess is that it's the Taxotere, not the Neulasta (or compounded by the Nuelasta). The muscle aches are not generally a side effect of Neulasta, but not unheard of with Taxotere. When I described the joint pain by saying, "It feels like my knees should be swollen, but they aren't" she was clued in. I guess Taxotere side effects sometimes mimic rheumatoid arthritis and fibromyalgia. These effects usually go away within three months of the last Taxotere infusion. Rarely, they last forever. Guess we'll find out.
It is what it is. And so it goes.
Wednesday, October 28, 2009
School has been rough on him. He has always hated being separated from the family, which has meant he's never gone to bed well. As a toddler, he had to keep up with his big brothers. Now, he assumes he is on par with his older brothers and absolutely refuses to acknowledge that staying up late makes mornings hell on all of us. Here he is, falling asleep while practicing for his spelling test last week...
He's a good, loyal friend....here, he and Eli are getting wild at a Crew game...
And at the same time, he's capable of quite a bit of introspection (and this picture was rotated at one point and now won't rotate again, dagnabbit blogspot)...
Somehow, he also ended up with a little bag of selenite chips, which supposedly can recharge my huge hunk'o'quartz next to my bed and has something to do with healing. As he told me, "I didn't tell her I don't really believe all that woo-woo, but it can't hurt and it might help, and she was so nice to me..."
Monday, October 26, 2009
Sunday, October 25, 2009
Just some pictures and a little commentary today. Every time I try to upload pictures to blogspot, I'm reminded why it's free.
Nathan creating his plate. Rather reverse proportions.
Nathan's plate before adding the "grows in the ground" stuff.
My "NAP" with food courtesy of Debbie Long. Peanut Pork stuff was awesome and got 5/5 from the family.
Some of the end results of this week's roasted veggies. Tried something new to make them tastier, less boring, more like comfort food, and healthier. I ground flax seed very finely and used that as bread crumbs on the mushrooms and orange cauliflower (what is that...please, please tell me it is a hybrid and not dyed). Top: roasted exotic mushrooms; Left: asparagus with whole garlic cloves and lemon juice; Right: Garlic, oregano, and cauliflower.
Cauliflower with flax seed "breading" heading into the oven.
Asparagus and Garlic right out of the oven.
Mushrooms just out of the oven. They are the best tasting shrooms I've ever eaten. They smelled awesome, even outside of the house. They smelled so wonderful that Tynan was chomping at the bit to eat some, and like them. Even Aidan was going to eat some, thinking they were chicken, until his father said the "M" word. Aidan doesn't eat fungus. Taco Bell, yes, but not fungus. However, I'm thinking the "meatier" ones could be substituted for chicken in some dishes...hehehehehehe.
Mushrooms before cooking.
More Mushrooms. I also added a pound of baby portabellas. YUM!
I also have Muesli finishing in the oven right now. I just added the honey, vanilla, and cinnamon to thick rolled oats, rye flakes, and almonds (which I ground a little too finely in an effort to save time...should have chopped them the old fashioned way and left the magic bullet alone). Now they sit in the cooling oven until morning.
1. Preheat oven to 350°F. Coat a baking sheet with cooking spray. Spread oats and rye (or wheat) flakes on the baking sheet. Bake for 10 minutes. Stir in almonds and coconut; bake until the oats are fragrant, about 8 minutes. Turn off the oven. Stir raisins into the muesli.2. Microwave honey for 10 seconds in a glass measuring cup. Stir in vanilla and cinnamon; drizzle over the muesli and stir to coat. Return the muesli to the turned-off warm oven and let cool completely, about 2 hours. Stir in flaxseeds, if using.
Makes 8 servings, about 1/2 cup each.
Saturday, October 24, 2009
One definition of "desire" is "the feeling that accompanies and unsatisfied state."
Another definition is "as sense of longing."
These definitions are much deeper than the standard "to want strongly."
I think very few of us actually live enough in the moment so that we aren't, at some level, unsatisfied or aren't living with a sense of longing. I'm not sure that it's even healthy to not be desirous of better circumstances or situations. Something has to keep us moving forward. We can be comfortable with the now, but something has to encourage us to move forward into the future and different circumstances.
There are moments, when I want time to stand still. I wish I could get back those moments, for instance, when a sleepy child would stretch out a sleep-sweaty hand and cup my cheek. Or those first, early years of our marriage when everything the other person did was so wonderful and exciting and perfect. Yet, had we not been forward looking, had we not desired something more, we'd not have worked hard to shape our sleep-soaked child into a young man. We'd have been content with him remaining cute and charming and child-like. We'd not have worked to make our relationship with each other grow, so that in later years, when we actually see the flaws in each other, when we don't always find each other fascinating, we still like each other.
In a recent email exchange with my wonderful sister-in-law, we were discussing aparigraha and our perceptions of ourselves.
She wrote: I’m no longer going to say “where did the time go?” or “I can’t believe [summer/September/your birthday, etc.] has zipped by so quickly.” I often say those things as an excuse for not getting something done, but it stops working after a while, and I think by saying it I’m reinforcing in myself a perception that time is going by too quickly, is too dear, and somehow I’m losing out. It is very hard to live in the moment when you’re busy looking over your shoulder watching it all whiz by....Oh yes, I’m going to stop making excuses for the house being a mess. As in, when someone comes over I’m not even going to refer to the condition of the house. This one takes a lot of effort! I am also not going to wait to have people over until the house is cleaned up. On the other hand, I am still working on keeping just a corner of the house tidy, the part people see when they come in through the garage. Unfortunately, that also includes the kitchen!
For some, keeping a tidy house, staying "on top of things" comes easier than it does for others. My sister-in-law and I are very alike in that we are in the group that find domestic routine quite challenging. We intend to do things, like sweep the kitchen floor or wipe the counters, but we don't ever quite get to it until crisis hits. We have both come a long way in the last decade or so, but we are still faced with challenges.
And this is where tonight's installment of Desiderata comes into play. The stanza I've been focusing on as I've been wending my way through the last 10 days post-chemo and as I have just started getting brave enough to look ahead to surgery and radiation this winter (and allow myself to understand what that means for me) talks about exactly the same thing:
"Beyond a wholesome discipline; Be gentle with yourself."
It's not unusual to use the adjectives "strong" or "weak," "effective" or "ineffective" and on occasion "healthy" in front of the noun "discipline." But it is pretty unusual to use "wholesome" along with "discipline." I like that concept though. We all know people who take discipline too far. In fact, we all know people who are so focused on their self-discipline or on imposing discipline on others that it seems all joy is sucked out of their lives. Of course, there are the others, too. Those who lack discipline to the point that life is chaotic and random.
We all need discipline. Self-discipline. Again, most of us know what we should do. I certainly do. Yet, so many of us beat ourselves up when we don't. Or, worse, we quit striving to do what we know we should do because we haven't yet done it. That pretty well sums my typical approach up. If I miss a day of exercising, I'm more likely to miss the next day, too. If I eat something I shouldn't or go overboard with a less than optimal food, it's harder to do better because I already feel like I've failed. It's an odd psychology. But it's mine, nonetheless. And I need to own it.
I did pretty well with gentle discipline when my kids were young. I need to learn to do the same with myself. I need a wholesome discipline: exercise 5 times a week, New American Plate, rest, recreation, laughter balanced by work for pay, family, and domestic comforts (such as clean clothing, food in the house, clean floors, etc). When I fall short of my goals or under-shoot the ideal, I also need to be gentle with myself. If I don't allow enough time to get in a good walk before it's too late in the evening, instead of berating myself, I need to just go out and do what I do have time for. If I never even make it out the door, I just need to let that go and look forward to the next day's walk. When I load too many comforting carbs on my plate (or worse, go back for more), instead of beating myself up, getting depressed, heading for more carbs--because what does it matter at this point--I need the discipline to reach for something else and the gentleness to remember that each meal is a new opportunity and that maybe I can salvage this one, somewhat. And if not, at least I can focus on how, in the long run, that third plate of chicken and noodles may have tasted good, but now I feel all bloated and logy and lethargic so I'm really not enjoying it. Had I stopped, had an apple instead, I could enjoy the same food tomorrow.
What I desire it to cultivate within myself a wholesome discipline and the ability to be gentle with myself.
And I should probably remember that when it comes to my children, too.
Thursday, October 22, 2009
I hate to sound trite and all "cancer has made me realize what is important..."
However, in my effort to reduce stress, I've been making a conscious effort to not take things personally that are not intended as such, which is one reason I'm having such a fun time teaching...I don't take their behaviors and weaknesses personally.
I'm also realizing how much energy I used to (and still do at times) put into getting annoyed. I know I'm not alone in this, but it's becoming much more obvious to me how often people get their knickers in a twist over so very little. For instance, the other night at the soccer fields, I was driving away and stopped to talk to Nathan. I happened to stop behind a parked car. I swear our conversation lasted less than 1.5 minutes...when are you coming home, what time is your game, you don't need to pick up your brother because I'll be back to get him...
The woman I stopped behind about threw a clot she was so annoyed my van was behind her car. That might have been me not too long ago. Really, though, it's not worth the stress getting upset leads to.
In an effort to simplify my life and focus on reducing stress, I've been focusing on these lines from Desiderata:
Go placidly amid the noise and haste,
And remember what peace there may be, in silence.
As far as possible without surrender,
Be on good terms with all persons.
In doing so, I've been working on my ability to assume positive intent.
It's much easier to assume positive intent when I don't take people's short-comings personally.
It's much easier to focus and find peace in silence, which doesn't always mean the lack of sound. It can also mean the quietude that comes with being on good terms with others. If I'm on good terms, I'm going to spend less time talking about how annoyed I am and spend more time talking about the goodness in my life, even if that goodness is how quirky my students are. There's a lot more silence in encouragement, even though I make more physical noise doing it, than in criticism. There's a lot more silence in enjoying people.
Yet, it's important to not surrender my boundaries, which is becoming easier the less agitated I am in general. Obviously, if I don't take people's transgressions personally, it's easier to enforce my boundaries. Of course, this could also explain the difficulties my nine year old has been having recently, since we've allowed him to be rather feral until now:)
Wednesday, October 21, 2009
Later, she drove me to my wedding.
After my first stillbirth, she helped me bind my breasts when I just couldn't take it any more (again, I know some of you are thinking, "You should just have asked for the drying shot or ignored it" Remember, until recently, I was shot phobic. And I also produced way more milk than the average person, having been capable of exclusively nursing a 30 lb infant and pumping for another baby for 6 months). Anyway, she was there.
When I got home today, I found the most mindful care package:
Pacman oven mitts. Waka waka, baby.
Pacman Band-Aids. Guess what will be put over my port puncture next infusion? Oh, yeh.
My fighting spirit is increasing. I'll be in fighting trim here soon.
Stop. I know some of you are thinking, "What? That's the last thing you should have been doing."
What I should be doing...and what I need to be doing differ greatly at times. The boys need as much to be normal as possible, and they also need some one-on-one time with me. Regardless, just sitting around doesn't make me less exhausted. Plus, it's not his fauly he's had a huge growth spurt. The audacity.
So, a trip to Plato's Closet and TJMAxx was called for.
It was a brief trip (one of the joys of
I also splurged (I seem to do that a lot lately) and picked up a briefcase/office on wheels. I've been wanting one for a few years. I have a backpack with wheels, but it is hard to keep things organized in it, since it is literally a cavern. I've complained here before about how heavy my laptop is, how carrying my bookbag, lunch bag, and body is enough to inhibit me from walking to school (and it's a mere .58 miles from door to door, so no good reason NOT to walk). I was going to have Nathan swap out the old wheels on my wheeled-bookbag, but noticed that the bolts were really corroded. Plus, the bookbag was never intended for the purvayance of a laptop. It's not padded and I'm not sure, in the long run, how water proof it might be. So, when I saw this wheeled bag, I just had to buy it. Since I'm using ebooks for my courses, I really only have hardware to haul. One small handbook, folder of rosters and paperwork, two computer cords, laptop, anitbacterial wipes, nuts for a snack, stapler, dry erase markers, my own erasers, water/tea bottles...that was waaaaay too much for me to carry on my back without feeling the burn. There are days hoisting it onto my back makes me shake. But no more!!!! I'm so excited. So, so excited to be able to walk to work.
...and I don't mean the results. Those won't be in for at least two days. No, instead, it shows what sort of shape I was in at the end of July.
To recap the timeline of recent events:
July 20 went to midwife with personal suspicions and for annual.
July 21 had biopsy.
July 23 had mammogram (note to others: have mammo before biopsy...just sayin')
July 23 had ultrasound
July 24 or 25 (while at soccer tournament...yeah for cell phones) got pathology results. That same day life came crashing down, but also was prescribed anti-anxiety meds.
July 28 MRI
July 29 First meeting with oncologist
July 29 Tell boys. Destroy all semblance of normalcy.
July 31 MUGA
Aug 3 CT scan
Aug 5 Register Tynan for school
Aug 6 chemo teaching
Aug 10 Surgery for Port placement
Aug 13 First chemo round
So, today I go for my second MUGA (and have a letter for Homeland Security to prove it...I'm now officially too radioactive to be legal in the USA, and will be for three more days. There's nothing like hearing "You don't want to have young children spend a lot of time sitting on your lap for the next few days...")
Either the xanax I was taking the last time warped time, or the same people did things quite differently this time around. I don't remember the long wait between having my blood drawn and having the blood mixed with isotope re-injected. I know I didn't wander the hospital corridors with an IV port in my arm the last time...I don't think. I waited in the mri area long enough to almost see the end of Judge What's her name, and now I'll never know if she finds for the plaintiff (whose hair fell out and was now on antidepressant meds--cry me a river, bee-otch) or the hairdresser (who swears she did nothing wrong).
I also don't remember the test being so uncomfortable. The pillow was flat, my arm didn't quite fit next to my body, it was chilly. I don't remember the little waist wrap thingie. I swear they didn't use it before. I also don't remember the EKG leads from the last time. Nothing hurt, it was just not comfortable. What I remember is that the MUGA was a nice, 20 minute nap. Not so this time.
I'm guessing the test hasn't changed that much in three months. I think I was in a much different place then.
Tuesday, October 20, 2009
Seriously, ignore the parenting magazine articles that tell you how to get a good night's sleep. Parenting is difficult and tiring. No two ways about it. You might get more or less sleep at different rest areas in the path, some parts are more difficult than others, some are physically demanding while others are mentally and emotionally demanding, but I really doubt that I will ever again sleep like I did pre-parenting. Even when my kids are grown and moved out, I'll still lose sleep with compassion and concern. I know now that my mother didn't sleep like a log while I was facing challenges in my life, even as a fully fledged adult with my own children. I'm sure the thought that I was up with a baby with asthma also kept her awake across the state.
Add to the general challenges of parenting, the additional challenges of working full time as well as working in a field that lends itself to odd hours, procrastination, and uneven workloads, and well...I'm well acquainted with being tired. Quite familiar. In fact, you might say tiredness and I are close friends. Tiredness is a way of life.
It's not just me, either. I think most of my colleagues are as well acquainted as I am. In fact, caffeine is our drug of choice. It might be the official drug of BGSU. If they drug tested us, they'd be best off giving us Starbuck's cups to pee in. If the administration wants to squash the movement to unionize, offer us free coffee and other forms of caffeine. We'd throw down our banners, rip off our pins, kow-tow to 10% cuts, just give me more energy in the form of caffeine.
So, we all know what it means to be tired. According to several web definitions, "tired" means "depleted of strength or energy; in need of some rest or sleep; fed up, annoyed, irritated..." Implied in these definitions, I believe, is the quality of impermanence. We are not tired to the point of collapse. Something that is depleted can be replenished. Someone who is annoyed will not always (one would hope) feel that way. If one is in need of rest, rest at some point can be obtained, and until then, we suck our caffeine and pretend that this is the way we are supposed to feel. Although research shows it really isn't possible, we "catch up" on sleep. Replenishment.
Fatigue, on the other hand, as I am finding out, is quite different.
Fatigue is the "decreased capacity or complete inability of an organism, an organ, or a part to function normally." When steel is fatigued, bridges collapse. You don't replenish fatigued steel. You must deconstruct and then reconstruct that part of the bridge.
And that is what this round of chemo has gifted me with: A much better understanding of fatigue, the fatigue of the chronically ill. A couple of semesters ago, I had three students who all had lupus. I gave lip service to accommodation for their fatigue. I felt great pity for young women to be suffering from this disease, and I tried to be understanding. But I really had no way to understand what it really meant to be "too tired" to get out of bed. That's because I was thinking in terms of "being tired" not "being fatigued."
I get it. As you all know, this past round of chemo has been hard. Each round has been different, but the one constant has been that I'm more "tired" than previous rounds. No duh. I've been, for all intents and purposes, poisoned four times now. Chemo drugs are toxic. They stop the division and growth of cells. No one denies that. Even the most conventionally oriented medics encourage drinking large quantities of liquids on the day of and days immediately after chemo to "flush the toxins" from your liver. By definition, a "toxin" is "a poisonous substance."
If you had food poisoning every three weeks, you'd get worn down. Heck, we've all seen what happens to students who ingest too much alcohol weekly for week on end. They get sick, worn down, and tired.
Big time toxins cause big time wear down. AKA Fatigue.
Here's the difference between "tired" and "fatigued." Tired means wanting to do something, but choosing not to. There have been times I've laid down on the couch in my street clothes, thought, "I should get up and change and get ready for bed...I'll do it in a minute" and awakened hours later still in my street clothes, light still on, teeth not brushed, and chosen to simply turn off the light and go back to sleep. I might say I was "too tired to get up" but really I chose to get up. I made a reasoned choice, most likely. At this stage of my life, if I get up, I might not fall back asleep!
On the other hand, just a little while ago, I got out of bed to get something, stood up, closed my eyes, and, for quite a bit of time, stood with my eyes closed in the middle of my bedroom, unable to open them, unable to remember what had prompted me to get out of bed (it was to get my glasses so I could see to continue working on this), unable to even remember if I was fetching something in this room or if I needed to go to another room, unable even to remember anything. I just stood there with my eyes closed. Literally asleep, and yet confused, on my feet. It was only swaying as I started to lose my balance that prompted me to open my eyes. And I still couldn't remember why I'd gotten up in the first place.
Earlier today, what prompted me to put out the call for subs teaching was hitting the wall while teaching my second class. Generally, I have the most enthusiasm and energy in that class. It meets at an ideal time, 9:30. Prior to that, it's too early for optimal Dawn energy (my name lies) and the class after that frequently finds me slowly wearing down, counting the minutes until I'm finished. But I'm generally on top of my game at 9:30. However, today, I just hit a wall. In the middle of a sentence, when I was pacing around the room, demanding students to spit out possible criteria for making clothing choices, then whapping them with different scenarios where reasoned judgments would differ, I just had to stop. I had to sit down. I couldn't go on. I was stuck. I could barely talk. I certainly couldn't reason. Walking around the room caused me to break out in a sweat.
I got home at 1:00 and was in bed until 4:00. I slept part of that time, but much of it was just lying here. If I sleep too much during the day, I don't sleep at night. Tired isn't the same as fatigued. I can be as fatigued as I want to be, but that doesn't have much to do with sleep.
Amanda has graciously offered to take my classes tomorrow. I'll chill all morning. I have a MUGA scan in the afternoon (cross your fingers that all is normal, or I have to go off the most effective chemo drug). I know I can make it through Thursday, and then have nothing on Friday. Somehow, knowing I have "nothing" days helps get through the "something" days. No soccer this weekend. Just rough drafts to comment on. I'll be SO much better by next week.
But man, this fatigue is really eye opening. You know those natural disaster movies where bridges collapse. The steel moans, the concrete buckles, there are high pitched metallic noises? That's really what it's like. I root for the bridge, then suddenly, it snaps and is no more. It is not a bridge any more. It's a pile of metal and concrete, totally unable to serve its purpose. That's how I've felt this week. Totally incapable of serving my purpose.
Sunday, October 18, 2009
The theory is that pain with Neulasta generally decreases with each cycle. Neulasta is the miracle shot of gold that creates white blood cells (or something) and keeps chemo patients from getting sick due to suppressed immune function. Side effects are quite "flu-like:" bone pain, chills, night sweats, joint and muscle pain.
This is my fourth cycle, and it's gotten worse each time....
Vicodin isn't touching it, or if it is, I'd hate to think what the full force of the pain would be like.
The joints in my big toes ache and burn, all the way up into the ball of my foot. My ankles and shins hurt like I've hit them on a step or been kicked by someone wearing hard soled shoes. Every time I look down, I expect to see big, bumpy bruises. My knees hurt to the point that I feel unsteady on my feet. They either feel like they are going to lock up or not lock firmly enough. I went for a walk tonight and wanted to moan every time I stepped off a curb. My calf muscles feel like they are tight or cramping, but they aren't. A charlie-horse without the charlie?
And I can't get warm. A little while ago, I made the most pitiful sight, I'm sure. I was wearing a hoodie, with the hood up, wrapped in a shawl, under a blanket, curled in a corner of the couch, moaning.
All parents, spouses, hosts, teachers, people experience this...the kids go to bed and you fall apart, partner leaves the house and you lose it, guests leave and you sigh with relief, students leave the classroom and you relax....your guard goes down, reality comes forth. After the big boys and Lou went to bed tonight, that's what happened with this pain. I just lost it.
I took a hot bath and found myself sitting in the tub, massaging my legs, sobbing. I couldn't get comfortable. If I sat up with my legs straight, my muscles throbbed. If I slid down with my legs bent, my knees hurt. If I propped my feet on the tub, my toes and ankles would ache.
Fidgeting in tub of hot water isn't easy, nor is it tidy.
I tried to listen to an audio book on my itouch, but then I'd worry about knocking it in the water. It didn't matter; it's hard to listen when you are crying.
Hopefully, I'll sleep tonight. The last couple of nights, pain and night sweats have awakened me numerous times. I'm pretty tired right now, though. Vicodin and Ambien and melatonin should help.
I'm off to heat up my rice packs and hope that I fall asleep before I start sweating, after I get perfectly arranged, before I need to move to relieve pain, after the meds have kicked in, before I have to pee, after I've had a sip of water, before one of the kids moves around, after the neighbor comes home from his night job (he needs a new muffler), before the drunks come and rip signs out of our yard, after a chapter of my audiobook, before a hot flash, after those flitting worries I face every night, before morning....
And tomorrow will be another day. The good thing about chemo is that every day post, I do feel significantly better than the previous day, mostly. Can't quite say that about fatigue, but I can say that with certainty about pain, illness, and other physical complaints.
I've been contemplating writing on this topic for a couple of days, wondering how to tread softly so I don't sound bitchy and snarky because I really don't intend to be. And then I went and did exactly what I was going to warn about.
A week or so ago, on one of the email lists where I've been a member for over a decade, the topic of how to approach someone who you have just found out has a terminal illness arose (that's an awkward sentence and perhaps I shall revise it at some point, but not now). Basically, how do you send that email or make that phone call that says, "Hey, I heard you are on the sucky ends of things right now...and I haven't been in touch for a while."
Now, I'm sure there are people reading this right now who had to make that same call to me. I can think of a few. It's never comfortable. In fact, in many ways, it's easier to ignore those calls and emails. Except, when I ignore them, then being remiss niggles at the back of my mind and I get no relief. But, what do you say?
Having worked with grieving parents in the past, I know that "this sucks" works. When I have students who lose parents or siblings, I always instruct their classmates to go with "I'm sorry" as a starter. I know that it can get annoying to have people "I'm sorrying" you all the time, but that sure is better than many other options. Yes, "I'm sorry" gets old. But really, I *am* sorry that bad things happen to others. "I'm sorry" may seem not enough in the face to significant adversity, but, unless you are on quite close terms with someone, "That fucking blows chunks" doesn't seem to be quite appropriate, either. "It's unfair" might be adequate, if we didn't always follow that up in other circumstances with "Life isn't fair."
To be fair, life and death are not fair, and knowing that doesn't make accepting it any easier. It's NOT fair that after 13 years of breastfeeding, I have breast cancer. Knowing life and cancer aren't fair doesn't make me feel any less cheated by that fact. So, I'll take "I'm sorry" over "It's not fair" any day.
And we all know that people faced with crisis--physical, mental, or emotional--need help. And we all know that we are supposed to say, "Let me know if there is anything I can do to help...anything at all. I'm good for it." And we all really mean it when we say it. However, in a time of crisis, the person who needs help may not always know what he or she needs. Worse, people in crisis may not even be able to decide what to ask for. Seriously. What is more important? To ask for help with meals or transportation? What if you call in your chits and then need more? What if you work up your nerve and ask for help, and that is the one time the person you ask truly is busy and can't help?
This is what I did today. I told a friend facing a huge family issue, "Let me know if there is anything I can do to help."
Really? Who is going to turn to the cancer lady for help? I am capable of providing help. Life sucks for me today and will for the early part of this week, but will improve over the rest of the month and by the time my friend's son is hospitalized for extensive and serious surgery, I'll be on top of what passes for my game these days. Instead, what I should have done is been concrete. I should have said, "Hey, get Nathan on the 'drive kids places' list...he can run errands for you or drop your other kids off at friends' houses while you are tied up at the hospital" or "how about if you drop some laundry off over here the week before his surgery on your way to work and let us do it for you" or "here's a gift card for food to be delivered to you on those days you are at the hospital with your son."
Let me know what I can do to help? This is a highly competent family. They will cover their bases. "Letting people know" takes energy and effort. I need to step up and make their lives easier, not more challenging.
And many, many people have stepped up making our lives easier in the last 2.5 months. It is 100% wonderful to just go pull a frozen meal from the freezer...one of the many that friends packed in there. It's 100% wonderful to have friends come in and clean after each round of chemo. It's 100% wonderful that meals are brought in. Abso-frickin-lutely. When I complained about cold feet, three colleagues gifted me with Smartwool socks. Wondertubulous.
Last week, I got the sweetest email from a friend. In it, she said, "I want to give you a care package, but I don't know you well enough to know what you'd appreciate the most." Then she listed four or five options. How wonderful! It's not that I don't love surprises. I do. Love 'em to death. This friend gave me options, and at least one was something I'd thought about but never done and something I certainly would NEVER have felt comfortable asking for. It was just too indulgent to ask for, even if I'd thought of it. At least in my mind.
Maybe it is me and my warped little mind. I grew up with a wonderfully loving, yet highly Puritanical, mother. She never wanted to be a burden on anyone, and in fact, frequently wouldn't ask for help when any reasonable person would do so. When she did ask for help, she frequently felt guilty for doing so. Perhaps that rubbed off on me in ways I'm not always fully aware. I feel like I do ask for help a lot, maybe more than many of my friends do (or more than they ask me). I'm guessing, though, that if someone told me to ask them if I needed a ride to an appointment, I'd only do so as a last resort; however, if someone said, "What time would you like me to pick you up..." or called and said, "Hey, how are you feeling...want me to come by..." I'd be more likely to accept. For one, I don't have to worry about "what to say" if they decline my request for help.
In many ways, our society is so disjointed, that we don't know what to say when things are uncomfortable, from how to ask for help to how to decline help graciously. When I have to tell people I have cancer, and they respond "I'm sorry," do you know what I usually say? The dumbest thing in the world..."that's OK."
Really? That's the best I can come up with? It's not ok. What the hell does "That's OK" even mean in that context? It's ok that you are sorry? Don't be sorry, it isn't your fault? I'm OK? What the hell. I always want to slap myself. That's ok. Shut up, Dawn. Would "thank you" be more appropriate? Probably.
Worse yet are those of us who are just too dang sensitive. Those of us who take what others say very literally and are unable to see awkward utterances as well intentioned. As my one friend recently wrote:
I remember when a friend was struggling with pregnancy losses and infertility, and it truly seemed that every answer was the wrong one. Her blog cataloged all the stupid things her friends and family members said, and while some were of the "Oh it's just God's plan" variety, others seemed well intentioned and honest. I remember one even being what most BTDT accounts *recommended* that people should say. But she was equally angry when people said nothing. I really cared about her and did not want to make her pain worse, but every approach seemed to make her more unhappy.
I really think that many of us are so out of touch that we just can't get beyond ourselves. Sure, when my babies died, some people said some horrible things. I think the worst was, "What did you do?" as if I'd done something myself to lead to a 41 week stillbirth. And of course, "It's all a learning experience." Really, because I learn really well without hands on shit like my baby dying or getting cancer. Really. I can learn from books and video, discussion and writing. Outside the heat of the moment, though, we have to rise above thoughtless comments and realized that when we are overly sensitive, we isolate ourselves and no one is better off. Possibly this is all due to being uncomfortable with strong emotions. We worry about making others feel worse, but at times when they already feel bad, how much worse can we make them feel? Do you think I don't think about having cancer most of every hour of every day? It's always there. If you want to hear about it, I'm happy to talk about it. In yet another parallel to childbirth and pregnancy, if you have cancer long enough, you get over inhibitions quickly. I've been poked, prodded, felt up, jabbed, looked at, scanned, radiated, over and over again. I'll talk about boobs with anyone at this point. It's not like I don't realize people aren't wondering...are they still there? What's going on? It's not an esoteric disease. It's discussed on Weeds. It has a whole month of the year devoted to it. Boob pink is all over the place this month.
Shortly after my mother died, a friend saw me on campus and admitted she didn't know what to say and that she worried that if she said anything, she'd upset me. So, she'd been avoiding me for three days (we used to walk past each other between classes). I appreciated her honesty. But it wasn't like I was leaving my classroom two weeks after my mother's death having forgotten that my mother was dead. Still, a year and a half later, just writing about that time brings tears to my eyes. I think of her daily, multiple times a day. Maybe we all need to get over ourselves and realize we aren't that powerful...we don't control what others think. Yet, we are that powerful. We do contribute to how others feel.
I'd much rather someone call me and say, "Hey, I've been thinking of you...what's up?" and let me take the lead....let me talk about how my 9 year old is freaking out at the thought of my breasts being sliced off or how I've been enjoying the great company at soccer games this year. Let me talk about how fekkin' tired I am all the damn time or what the hell is going to happen when my husband loses his job. Or maybe just let me talk about how funny Zombieland was and how I laughed until I about peed my pants watching it. Anything is better than pretending that nothing in my life has changed. I'm not going to forget we are on the brink of financial disaster, I have cancer, I face multiple surgeries in the next few months, or that I could have given my kids the "cancer gene." Those things aren't going to go away. No matter what you don't say, I'll still be thinking about them.
And believe me, if you want to do something to help me or my family, feel free. Step right up. It will be greatly appreciated. Trust me on that. But I'm not always able to ask or suggest ways for you to help.
Friday, October 16, 2009
Gentle stretches sort of help; movement helps; it's impossible to stretch and move all the time, especially when I'm so tired and taking three meds that cause sleepiness. I went for a long, gentle walk tonight...the weather is perfect, the temp is very comfortable, and now I'm thinking ahead to winter when it will be bitter cold, and that makes me sad. If we could have these temps, or a tad colder, all winter, it would be ideal.
So, now, with day two being worse than the last couple of day twos, I wonder what tomorrow and Sunday will bring. I have 15-20 essays I have to grade by midnight Sunday. And, like an idiot, I sort of told Tynan I'd try to make it to his game in Maumee tomorrow. Why I thought I could do that, I don't know. I guess because I feel no better sitting at home feeling ucky. If the weather is nice, I might as well at least be outside enjoying the fresh air watching soccer. A weekend without soccer is almost like not a weekend...
Wednesday, October 14, 2009
I've heard that the yoga classes in BG proper are similar in approach...more focused on the physical and little to no emphasis on the non-physical. On the advice of someone I've known for years and who knows what I'm looking for, I have begun studying yoga in Monclova in the Still Waters Yoga school.
Tonight, we were exposed to the concept of Aparigraha, which basically is the concept of non-possessiveness or unselfishness. Accordingly, I don't think this concept is anti-Christian, especially given this explanation: "...the collection or hoarding of things implies a lack of faith in God and in himself to provide for his future." In essence, "Thou shalt not covet." But again, neither here nor there, given what I wanted to write about tonight.
What I did want to comment on was how Apargigraha relates to last night's "I'm over this shit" post. I can't change this. I can facilitate the journey through diet, exercise, supplements, and good doctors. But otherwise, it is what it is. It is what it is (which I understand is a sports aphorism). I need to stop get rid of what is bothering me. I can do this in several ways...I can accept it. I have no choice, really. I can educate myself. I have started this. I can figure out ways to alleviate the side effects of chemo. I can prepare myself the best I can for surgery. And in doing so, I can stop collecting and hoarding the negativity.
Which is not to say that I have to always put on a happy face and always be positive in the face of frustration, exhaustion, illness and pain (and, yes, that is the order of significance of what is bothering me lately...order subject to change). In fact, be prepared to hear the truth from me in the future although I've pretty much been forthcoming when people I know-know ask me how I'm doing. I'm not going to hoard my experiences.
Also, I'm going to focus on letting things go...to make room for new, better, more vibrant things. This might be where hand stitching themed clothing for cement goose porch art comes into play. Or maybe I'll take up an instrument. Or other art form.
I need to make room for new friends, and perhaps that means cutting other friends loose. Actually, Facebook is facilitating this. I'm also reconnecting with other virtual friends who have dropped out of sight online over the past 5 or so years. It's hard to believe I've been part of online communities before it was a cool thing to do, 1995. Aidan was a nursing babe-in-arms when I joined my first email list. And I'm still in daily contact with some of those people. This is not the first time my online friends have gathered round to offer me support. When Nathan nearly died from e. coli poisoning, I came home from the hospital to shower and change my clothes and immediately sent an email off to an online group. Katie Granju and Amy Scott were the first to reply. Online friends pitched in to help with the hospital bills (when I talk about the need for affordable health insurance, I know from whence I speak...we weren't insured during that illness). My online baby shower was awesome, too. I need to find time to more concretely appreciate the deep and long lasting friendships, both real and virtual, that I have. And phase out the ones that provide me with antagonism and frustration and negativity.
And of course, stuff. We've gotten rid of so much stuff over the past few years with all the moving house we've done, but we are also good at accumulating stuff. Stuff causes work. Work takes time away from other activities. Stuff needs to go. Not to mention that accumulating physical possessions generally means spending money. Lack of money leads to the accumulation of stress. Stress is bad and takes time away from more productive activities, which then leads to more stress.
On the other hand, shopping therapy has been working quite well lately. Fortunately, I'm perfectly happy shopping at Saver's and Goodwill. My husband not so much so. At least he's happy shopping sales. The big problem here, though, is that he is comforted by being surrounded by stuff and clutter. It feels womb-like or something to him. If you've seen his office, you will know what I mean. Do-dads, piles, plants, photos, things. I, however, find that very discomforting. This dichotomy can be directly traced to the homes we grew up in. My father organized his pencils by height, our shoes were lined up by the door by size, the books were organized by subject and size. The home he grew up in, not so much from what I understand. Color was more important than clutter. But yet again, I'm digressing...an issue I've always had with writing (and speaking) compounded by massive amounts of steroids today during chemo and orally.
What I've decided, though, is to engage less in "this will suffice" and more in "I really like this and it will bring me happiness of some sort" when it comes to accumulating things. Hence, the spiral suns I allowed Louis to buy last week. Normally, I'd look at them, decide they were too expensive to just hang on a wall. Think, "I bet I can find something similar at Big Lots" but the truth is, the ones I might find at Big Lots wouldn't be the same quality. If Louis feels the need to hang things on the living room wall, it might as well be something I find meaning in (making it art with a purpose, something important to me). If I have a spiritual symbol, the spiral is it. My tattoo will have a spiral in it. Each of my henna tatts has, including the one Amy did on my belly the day before Tynan was born...it was a sun and a spiral. Oops, digression yet again.
I'll buy my clothes at Goodwill and Saver's, but I won't buy Kmart, Target, and Wal*Mart brands there. Today, I came home with Croft and Barrow, Dress Barn, and Banana Republic. Colors I like. Fabrics that are comfortable. I'm thinking ahead to clothes that will be easy off and on after surgery this winter. In doing so, I realized that nearly every single shirt I own requires being pulled over my head. Erm...that would be because nearly every single shirt I own is a tshirt of some sort. Not true after this week's shopping therapy. In an effort to simplify my life and not hoard, there is also a large donation heading to Goodwill tomorrow. What to do with my fat clothes, though? I've known a lot of people who have gained weight during chemo and surgery. Should I keep them or let them go?
Back to my original thought though...I must let go of fear. When we are fearful, we hold our breath. When we hold our breath, we can't allow in more breath. When we hold pre-conceived beliefs and especially un-examined beliefs, it's much harder to discover new ideas and deepen our own beliefs. As Socrates said, "The unexamined life is not worth living."
And I think that's what I've taken all this time to say: I now have the perfect opportunity to engage in self examination. Yoga may be opening up opportunities to do so. This blog is giving me the opportunity to put some of these more nebulous thoughts into concrete words (the rest of the work keeps personal journals, but I've always failed miserably at that...I need real people to write for).
Just now, in searching the web for more information on Aparigraha, I just stumbled across this essay, which really says what I've been attempting to say here. I suggest you read it. Clearly, the author is in better shape than I am right now. No digressions in his or her writing.
Otherwise, in a very good way, the check up was uneventful. Breast looks totally normal in all regards. It was so uneventful, I don't have to go see her again until my last infusion date, in six weeks.
Kind of a let down after all the good news in previous appointments.
I actually was able to afford it (hence the ability to live in it). Yet another friend helped me research washers when mine broke, and of course there is the "Cleaning for a Cure Crew" that is cleaning my house after every chemo treatment so it's comforting when I crash (plus, the microwave gets cleaned and the laundry room gets swept). I haven't uploaded pictures yet, but yet another friend has made me the most awesome fleece winter hats, custom fit for my special noggin. They are two layers of fleece with four around the ear area, so really quite warm. In fact, almost two warm for right now, but now is getting colder and they will also probably work when I'm no longer bald, especially since I plan on keeping my hair short.
The other day, I came home to find a Buff from yet another friend. It rocks! OMG, this is one head item of head gear that I'm not passing on, assuming I can keep it away from Tynan, who also loves it. Soft, yet warm. Ideal for in the house right now, especially because it has no band or ridge or anything to get in the way when I lie down, which it seems I do too much of lately.
Above, are pictures of three other lovies...I refer to two of them as "power shawls," infused with positive energy and loving thoughts. The darker one on the right, is incredibly soft, yet thick and quite large. Again, I have to wrestle Tynan for it. He likes to wrap up in it and lean against me and say, "I'm so happy and warm." So, I tend to let him have it. The lighter one is thinner, not so wide, yet warm, and I'm using it right now in the infusion center because it folded up perfectly to fit in my "bag o'chemo anti-boredom crap:" novels, computer, itouch, lunch, papers to grade (don't really see that happening). Also in the picture above, you can see a red, flannel plaid rectangle, which is an herbal pillow thingie (see what I mean about my vocabulary dropping). It's also new in my chemo-bag. I intend to use it as an eye pillow here and at yoga later tonight. It smells soothing and yummy.
Finally, the friend who made my fleece hats, also make a tied fleece blanket. It's awesome, and I was sure, because it is brilliantly pink and covered with ribbons that I would not have to share it, but once again, I'm wrong. It's become Nathan's favorite blanket while he watches sports in the chilly family room.
If you've also provided lovies and I haven't mentioned them, it's not because I'm not appreciative. It's because my brain is misfiring and if I don't write everything down, it's gone from my brain. This explains why I've not used names...I'm sure I'd bollux something up in that regard.
Even with a fully functioning brain, I am bad with names.
All these, plus more, are what are giving me the strength and encouragement to continue on right now.
Tuesday, October 13, 2009
Early in the semester, before getting to the point where grading and commenting on essays becomes a nearly daily task, it wasn't bad. In fact, I've really had a great time teaching this semester. I enjoy my time in the classroom, and find teaching, especially my 9:30 group, very energizing. My early morning, 8:00 a.m., class isn't so energizing...they are low key and I'm not a great morning person. Then there are days where I'm pretty wiped out by the time I teach my 11:30 class....after teaching at 8:00 and 9:30 and holding an office hour....but in general, my students are all nice, I have quite good attendance....only 1/60 of my students has flakey attendance (one other might be working on entering that category, but even those two come to class weekly) and only one missed turning in the last essay (and he comes to every class...go figure). But so far, I've only had good attitudes from students and I don't dread walking into any class (which is a change from some other semesters when I've had classes that simply have seemed to hate the very air I breathe and have seemed on a mission to bring me down and be confrontational).
Teaching is going great to the point that, while my original plan was to use all assignments I'd used in the past, I've developed 2.5 new ones, and I don't feel overwhelmed.
Home is running well, thanks to a TON of support from friends...meals, cleaning, general good vibes, encouragement, rides to and from soccer, husband not working. I'm not saying we couldn't all use a good dose of therapy to deal with some high running emotions and stress in many areas of life (Louis' job stress, the younger boys and school full time, school, school, school--school is pretty stressful when you've not played that game before--general teenage morphing, sibling issues amplified by stress, health and the medical bills now rolling in....actually, we've been living at the top of the stress heap for quite some time....1.5 yrs ago my mother suddenly died, a year ago September Louis' father died, our mortality was amplified when a friend died this past spring, Louis lost his job last Spring and has struggled with the replacement job they provided for him to the point he's being threatened with firing, he tore a tendon in his ankle, we bought a house, moved, have been dealing with Tynan's ankle injury, sent two kids to school--one for the first time ever which has been a HUGE life plan adjustment for all of us--one kid started driving which is quite stressful although helpful, Louis got his first "old age + genetics" diagnosis this summer....oh, and my cancer, chemo, future surgeries, and radiation all winter, not to mention how this becomes an issue for the rest of my life....OK, now I have to stop)
But dang, I'm really just starting the whole cancer fight and I'm already tired of it, especially tonight. It sucked getting tired walking around the zoo today. It sucks to be tired, but unable to sleep because of the damn Decadron. It sucks to be clenching my jaw to the point it aches because of the Decadron.
I'm tired of being tired. I'm tired of taking pills. I'm tired of seeing doctors. I'm annoyed that a hangnail requires 10-21 days on antibiotics. I'm tired of feeling like crap. I hate the feeling of my port. I'm tired of worrying. I'm tired of being short tempered. Although I know that it's really not a huge deal, I dread the 10 days after each of the next three chemo infusions. Although historically I've enjoyed napping, I don't enjoying having to nap nearly every day after I teach. I should have plenty of time to grade...I'm home daily by 1:00. Instead, I sleep. I'm highly frustrated with the progression of chemo brain. On top of sleeping most afternoons, I also have a terrible time focusing on those papers that need to be graded. I forget what words I am trying to write in comments. My vocabulary has dropped to that of my students. I sure hope they all know what "thing" means because I keep wanting to write, "You need to work on that thing in your introduction....you know, that thing that tells me what the focus of your essay is...that sentence thing most collegiate essays have....starts with a T....you know, that thing....we talked about it last Thursday and it's mentioned in chapter 11 of your book...."
Infusion days are no longer evoking neutral feelings at best. I can't even bring myself to stop writing to pack what I need to take or even make a list of things...so wanna bet I get there tomorrow without food? I have to leave earlier than normal, and I'm still up an hour past my bedtime. Oh, that's right, even with Ambien, I don't sleep on Tuesday nights with Decadron. I'm not even going to mention the silver lining of being more able to nap during chemo. I'm tired of looking for silver linings. I don't even like silver.
And have I mentioned the steroid munchies? They really suck when you are in a house full of healthy food. This apple sprinkled with cinnamon isn't really cutting it. Ballreich's chips and Lawson's Dip would be more satisfying. I could eat cheez wiz by the spoonful at this very moment. Any overly refined food would hit the spot. I could roll in white flour and lick it off the dirty kitchen floor.
I'm tired of my feet being cold and burning at the same time. Neuropathy sucks. The 14 days out of every 21 of fumbling fingers is a royal pain in the ass...erm...hand....erm ability to type accurately, not to mention get out change from my purse.
I need to stop. I'm depressing even myself. I'm not depressed in general. Of course, one of the many pills I suck down is an anti-depressant, which, in retrospect, may have been a good call on the part of my GP. I'm not happy. But I've certainly been more depressed in my life.
I'm just already ready for this all to end. But I'm only 9 weeks into many weeks. The idea of daily radiation for 8 weeks is overwhelming. Daily? Daily? Every. Day. In. The. Middle. Of. Winter.
And then I wonder, "Since I'm taking Winter semester off, what will I do with all my free time?" I'll have to find a hobby. I really don't have any hobbies, other than what this is becoming.
Oh, one side effect of Decadron is fixating, especially on things I can't answer...what hobby should I take up? Wouldn't it be funny if I became an exercise addict? A distance runner? Seriously, if I start sewing odd, tacky things and open up a booth at the flea market, someone stop me, please? Odd things like patriotic stuffed roosters or something. Maybe I'll just meddle irksomely in my children's lives. Nag their teachers. Iron their clothes. Coordinate their outfits. Play board games with their friends. Match their socks. Make chore charts.
That's a plan. I'm glad I figured that out. Now I can fixate on the best chore chart out there....
Have I mentioned the steroid hot flashes (which are worse than regular hot flashes). When you don't have hair, you really notice the sweat beading up on your head. Nice point of view shift, but you get my drift. When I have a hot flash, I notice the sweat beading up on my head.
OK, one last time: I'm tired of this shit.
Back to my regularly scheduled programming tomorrow.
Sunday, October 11, 2009
Saturday, October 10, 2009
Now I know that I was "sick" this week, because of this darn infected finger (which is improving, but slowly). I had a fever when I went to the doctor on Thursday and was still running one on Friday, so I imagine that I probably had one on Wednesday and maybe even as early as Monday or Tuesday. Today is the first day I've felt myself (or what passes as myself these days).
Tonight, I dragged Tynan out for a walk with me. We walked from our house to the Barbee's house, where we dropped off some Tupperware (if you care to know, they live across the street from where we lived on Evers a few years ago), to City Park and around it two times, up to the corner of Conneaut and Haskins, over to Poe, took a detour to go around Darlyn, and then continues on Poe to N. Prospect, and then home. According to my (uncalibrated) pedometer, that's a titch over 3.7 miles. or a titch over 7900 steps in an hour and 20 minutes, give or take. Tynan only whined the last mile or so.
Thursday, October 8, 2009
Of course, there's the hair falling out, the nausea, overall feelings of illness, fatigue, bowl issues, mouth sores, taste changes, hot flashes, perpetual chills, neuropathy, muscle aches, increased appetite, loss of appetite, mood swings...have I missed anything?
Oh, yeh, hair doesn't grow, doesn't grow as fast if it does grow, and the same can be said for nails.
Remember the uber-finger owie from a while back? The nail I ripped off folding towels? Well, I also tore another nail at the same time, only not so seriously, or so I thought. It didn't hurt, didn't bleed. I ignored it.
However, last weekend, it became apparent that it had torn into a hangnail and was infected. Normally, no big deal. Give it a few days, it would grow out. I'd trim it. Problem resolved.
Only, when your nails aren't growing and your immune system is suppressed, a simple hangnail does become a problem.
So here I sit, feverish, smacked down, and on antibiotics for 10 days.
Hopefully, this won't get in the way of next week's chemo.
The only thing worse than getting chemo is not getting chemo.
Smacked down by a hangnail. Go figure.
Wednesday, October 7, 2009
What I really like about the essays isn't that they are all especially well written. Some aren't. Yet, they all touch on our shared humanity, shared basic truths that many of us lose sight of in our daily lives.
One of those basic truths is that good is just as communicable as evil. We just pay more attention to evil and bad news. Norman Corwin nails this in his essay by the same title, "Good Can Be as Communicable as Evil," when he writes, "So long as conscionable and caring people are around, so long as they are not muted or exiled, so long as they remain alert in thought and action, there is a chance for contagions of the right stuff..." What I especially like about this is that he places the onus of goodness on all of us...those who do not mute others as well as those who need to remain alert in thought and action. That's all of us.
Since late July, when I first started this journey, I've witnessed and been the recipient of an incredible amount of goodness. Friendships have deepened. I've seen what could be, and it is wonderful. The goodness of individuals may not solve all the world's woes. Evil and badness is still out there. The tragedy of Darfur will still exist. But we can all make the day-to-day lives of other people, no matter how bad the larger circumstances are, better by doing what we all know we should do.
And we all know what we should do. We all know we should help the little old lady across the street, so to speak. Some of those acts of kindness may be truly random. Others, not so much. They may require some planning and intention on our part. When it comes to goodness, procrastination doesn't work so well. I'm probably the worst when it comes to this. And I've missed my opportunity more than once. Ultimately though, we should all put others first more often.
What is "good" that doesn't happen? Is the net effect neutral? I think not, because the effect of goodness is so much greater than nothing. And when we pass Good on to others, they are more likely to pay it forward, allowing it to grow exponentially.
The economy might stink. We might all be bringing home less money and paying more for insurance, groceries, and utilities, maybe, just maybe, we could all feel a little better, more appreciated, more cared for, not so alone.
I know that being the recipient of goodness over the last 9 or so weeks has made a huge difference in my life.