Archive for August, 2009

chemo crud creeping in again

August 30, 2009

Yuk.  Once again.  Fingers ache, vertebrae seem stunned, feet and hands itch, horrible metal mouth, searing heartburn, all complements of chemotherapy.  In addition, just as my Oncologist predicted back in June, I have a new side effect: hot flashes….except they are not timed to infusions, I think they are here to stay.  Apparently when you are my age, chemotherapy throws you into menopause whether your body is ready or not.  I guess I am thankful that I can at least semi-function for an hour or so at a time….but I really have to think about what it is I intend to do.  I sure do hope this is the last time I ever have to endure chemo, but of course, you know I think about all those stories I have heard…..from the survivors themselves, of relapses, and more treatments.

Can’t write anymore right now.  Each time I begin a new paragraph I sound too pathetic.

so far, very good

August 27, 2009

Well, I made it to the infusion room, and got incredibly lucky to get the private room again!  The premeds went in with no problem, and Taxotere was next, again NO PROBLEMS!  It is now 6:45 pm and the Cytoxin is about halfway done, and I’ll be soon leaving Infusion Center B1 for the last time.  I love U of M, the nurses are all exceptionally skilled, today Julie is my infusion nurse, and she is great.  As much affection as I have for the people here, I really hope to never, ever have to come back here again.  I am grateful for the people who make the treatment of this disease their lifes’ work, but cancer still sucks.

middle of the night meanderings of my mind

August 27, 2009

well, shit.  it is now 3:11 am and I’ve been awake since 2:14.  experience tells me I have to get it off my chest or take drugs to get back to sleep, and since I’m already going to receive massive amounts of drugs in about 12 hours, I choose writing.

All I can think about right now is school.  I wonder how Open House went at my school, because I missed it.  Still on sick leave, and the thought of being in a small enclosed room with easily 30 to 40 parents and kids at a time (and that is “times” seven…I teach seven FULL classes…rather, I will teach seven classes when I get to return to the classroom…hopefully in mid to late September) made not only my oncologist nervous, but really, me too.  Too much of a a risk of infection just days before an infusion.

Heres what I missed:  I love meeting parents,even though I don’t always remember them all.  Is is so fun to see the kids bring their parents in, at the Junior High level many of the kids are still excited to introduce their moms and dads to their teachers, so you get to see first-hand “how far the apples fell from the tree”.  Some kids look so much like one of their parents it is uncanny, especially when their outward demeanor is seemingly unalike either parent.  Usually that means the parents are smart, successful, outgoing, and engaged in my brief 7 to 10 minute presentation.  In class their kids “hide” in a metaphoric sense….long hair over the eyes, less eye contact, little to no active involvement in discussions, etc…..  These are the kids who can be challenging, but I know I usually have a pretty good chance of drawing them out by the end of the 18 weeks (my classes are all semester classes).  I don’t know why, exactly, I have few theories, but I am certainly no psychologist, so I’ll spare your from my deep thoughts there.   But boy, did I feel like I really missed an opportunity not being there.  It makes for a long day, to teach all day, and then be at school until 8:30 or so, but it is so worth it.  It is often your best and only chance to make a good impression upon a parent, explain your teaching philosophy, grading methods , course content and classroom expectations.  Then if a kid goes home and whines about something in class, the parent should be better able to assess if it is just whining, or if they need to call me.  Sometimes there are legitimate misunderstandings that occur in class, and as a teacher I want to know that stuff, because if it was problematic with one kid, maybe other kids misunderstood something, too.  I know, I know, as much as I talk, I should be a master of communications, but I screw it up sometimes….hard to believe, huh! :^)

I also woke up thinking about recipes.  Specifically, cookie recipes.  I don’t usually like making cookies, but yesterday I made a fabulous batch of cookies…..in fact they were so good, I might just have to go eat one as soon as I finish this post.  Maybe that will be the insomnia cure….a big oatmeal mini-chocolate chip cookie with a warm glass of milk.  Yum.  Did you know that warm milks’ reputation as a good bedtime beverage has scientific foundation?  Something about the proteins in the milk when warmed act upon the sleep center of your brain.  If I am still alert, later I’ll look it up and edit this part of the post to be more specific about that.   Anyways about that cookie…..it was really exceptionally good considering that the recipe was “made over” to be more healthful…lower saturated fat content, higher fiber and more grams of protein, and I usually only “like” oatmeal cookies, but this one was really, really good!

I also made “Crispy Cereal Treats”, again another “made over” recipe for rice crispy treats.  Did you know that you do not have to use the normal half stick of butter when you make Rice Krispie treats?  I mean, butter is FABULOUS, but why waste those saturated fat calories in a recipe that hides it?  (I say, save the butter for toast or for a fabulous sauce for fish or sauteing a big batch of vegetables or for a great garlic bread….mixed with 3 parts olive oil to 1 part butter… of course with loads of minced garlic and a touch of basil and sea salt)  This particular Rice Krispie recipe calls for 1 T of butter and 1 T of canola oil, and still comes out GREAT!  It also adds more fiber by replacing a cup and a half of the relatively weak (nutritionally speaking) rice krispies with another high fiber cereal of your choice.  PLUS, adds more protein with roasted unsalted sunflower seeds.  Now I know some of you are cringing…thinking I’m ruining a perfectly good homemade staple of our culinary culture in the United States, but let me tell you, if my 8 year old likes it, well then it’s got to be OK .  Charlie is the kind of kid who visually inspects his food and has a “nose” like no one one I’ve ever met.  He can spot a “hidden vegetable” from a  mile away, and if an offending ingredient is suspected, he will immediately call me out on it, and he is right most of the time. 

The third thing I made was called “grab and go breakfast bars”.  They are a kind of a fruity granola kind of bar cookie.  Except I don’t really consider them a cookie in a true sense.  But I do consider them to be pretty good.  Now this recipe I have modified slightly, I add regular sized chocolate chips, and I do not completely reduce the dried fruit in with the grains in the food processor.  I do process them in the FP, but only to a level of mince/chopped, then pull them out of the FP, finish the recipe, ALL IN THE FOOD PROCESSOR (I love those kind of recipes, all made in the FP, fast and easy!!) and then I hand mix the fruit and chocolate chips into the mixture in the end.  This is such an EASY and incredibly healthful recipe.  A great low-fat and high fiber, high protein snack.  I’m going to get my husband to eat these when he complains theat he “doesn’t have time for breakfast”.  At least if I provide the alternative to morning nutrients, he doesn’t have the right to complain to me anyways.

NOW…if I have interested you enough in these recipes you have to either buy the book Mom’s Guide to Meal Makeovers by Janice Newell Bissex and Liz Weiss.  Their website states they “are registered dietitians and The Meal Makeover Moms. As two of the nation’s top experts on family nutrition, they’re on a mission to help busy families eat better… ”  Website location: http://www.mealmakeovermoms.com/    I think I have given the correct titles to their recipes so they should be easy enough to find!  Their website also has access to their blog, videos, recipes, recommended convenience food products, etc.  If you are interested in healthier cooking without losing the flavor this is my number one “go to” cookbook.  So far everything I have made from this book is good to excellent.

So now it is 4:32 am YIKES!  I am still wide awake, so I think I better go get some warm milk and try to get to sleep.  I need to wake up in just hours for my big day….LAST CHEMO INFUSION.  (Wish me well, and no bad reactions.)  Hopefully I don’t have too many horrible spelling or grammar errors becauseI’m going to post this writing without a final edit….I’ll do that in the morning.

LAST CHEMOTHERAPHY THURSDAY!

August 26, 2009

If all goes well, I should be sitting down and getting poked with a big needle for the last chemotherapy treatment in about 17 more hours (3:30 on Thursday).  Please send good thoughts, prayers, white light, funny jokes, inspirational dances, or whatever it is you think might help me get through it with no bad side effects.

I’m not really scared or anxious….the scary itchiness has sibsided.  Well, maybe I am a little anxious…I so badly want all to go well, I’m even making all kinds of “deals” with the universe and even God, too, just to cover all my bases.  I will get up early and walk to the river, meditate for a bit, do my “personal challenge race” up the 55 steps below the Perry Monument to stimulate positive endorphines, stop at the kids school to complete “bus paperwork” (firstborn child got on the wrong bus today) and then home to get ready to go to Ann Arbor for the whole day.

I’ll let you know how it goes.

uh-oh

August 25, 2009

I’m scheduled for chemo in two days (on Thursday) and tonight I feel itchy and have swollen ankles.  I hope it all goes away and I lose the anxiety.

a couple of good days….

August 25, 2009

Wow-lucky me- Sunday was another good day!  Got to go to church, see all my friends…..nothing quite like going to a place where not only does everybody know your name, but they are all like really nice  big brothers and sisters and moms and dads.  Some of them are like quirky neighbors, and others are just like best friends.  Truth is, I really have only known them all for less than two years, and only know them from church*, but I know their interest and care is sincere.  Again….lucky me. 

Then on Sunday afternoon, I still felt great so I went to the Levis Commons Art Fair and got to do one of my favorite things….buy “Artist Jewlery”.  I found a sweet little set of a silver necklace and earrings created by a Michigan woman and her dad…..I tried to take a picture of them to place here, but I’m no professional photographer…the necklace says “give thanks”.  It truly represents how I mostly feel, even if you think I sound kind of “whiny” from time to time. 

Today……well, today was a whopper of a day!  I was up in the middle of the night with an anxious and sleepless child (school anxieties) so I can’t believe how much I accomplished with the help of my friends.  Especially MarvelousMarilyn (MM).  Let me tell you about MM.  She has volunteered herself as my monday morning helper around the house, which mostly means “maid work in the kitchen”.  But MM has really been a great inspiration for me, has kept my spirits up when I have been dragging, vigorously wiped down my kitchen counters (still kind of difficult for me to do), helped clean out a neglected refrigerator, vacuumed, vacuumed, vacuumed Yellow Lab Dog Hair, folded laundry, talked to boys, etc. etc. etc.  Today MM helped me clean up the “student center” in the house which is where all the kids school work, legos, and miscellaneous crap lands, and where their beloved computers reside.  Well, this area has been a DISASTER for….months, and I have been feeling bad about that.  Not a good enough housekeeper to even get the kids school work from LAST SCHOOL YEAR saved or filed away or thrown out or whatever you are supposed to do with the volumes of paper two kids bring home from elementary school.  Well, today MM helped me in A BIG WAY get it pretty much whipped into shape, and looking good.  Still a bit to do yet, but I feel like I can get the rest of it now.  Even if I had done nothing else today, it would have been a great day because of this accomplishment.  Thanks Marilyn, you are a marvelous friend and like a mom I wish I had.

THEN, after lunch, I took the boys to their new daily afterschool childcare, to get to know the family, the toys, the other kids, etc. while I had a couple of appointments.  I am keeping my fingers crossed that it works out for all involved.  Like..all of my fingers crossed and toes crossed, too, because right now, I don’t have a back-up plan for afterschool child care, and even though I’m not back at work yet, I will be soon (I hope) and will desparately need the assistance then.  So far, the boys have said it was “OK” which is a good sign.

SUPER LUCKY ME, had an appointment at The Victory Center** with Tom.  I’ll tell you, we are so lucky here in NW Ohio to have TVC and receive the benefits of the adjuvant therapies offered.  You know things are good when you begin to feel better just walking into a therapist’s room.  Tom practices Reiki and Sound Therapy and it is the best I feel all week when I am in his care.  It is so difficult to explain, but for me, it provides such a deep sense of peace and relaxation which permits your mind and body to just experience the flow of energy on a completely pure level.  You must be willling to release conscious thought to truly receive the benefits.  Again, I can only say what it gives me, but it is a colorful, relaxing, yet at the same time energetic experience.  And no two sessions are exactly alike.  And I always feel just great when I am done.  Thanks Tom, I love the work you do.

AND AS IF THAT WASN’T ENOUGH, MY NEXT APPOINTMENT WAS WITH THE DENTIST!  Now you might think I am being kind of sarcastic here, but nooooo, I actually like going to the dentist.  First of all, at MY dentist’s office, everyone is really nice and the hygenists never scold you for not flossing well enough.  Secondly, they have really nice chairs.  Thirdly, Dr. Urbanik is friendly, sincere, and has really small hands.  Or at least I think he does.  I never actually look at his hands when I can see them, but I am always impressed that when he has his hands in my mouth he doesn’t make me gag.  The last time I was there was just days before my cancer trip began, so I filled them in on my busy Spring and Summer.  Did you know that one of the potential side effects of chemotherapy is open sores in the mucous membranes of your mouth?  Again, lucky for me, I havn’t had that problem.  Dr. U was impressed, said nice things about my mouth.  While there I mentioned that I might be participating in a clinical trial at U of M, the Bisphosphinate Study and might need his office to send dental records.  He surprised me by mentioning we need to talk about that further, and perhaps even complete a more in depth examination.  He briefly explained how  the mandible (and to a lesser extent the maxilla) process bone, and how the drug in this trial will move through bone, especially the jaw bones which then brings up a concern for the future integrity of those bones.  Hmmmnnnn.  Great that my Dentist actually knows about the study I am talking about, now I have another thing to research a bit further.  In my spare time.  I really am grateful to have a smart tooth guy like Dr. U.

OF COURSE MY DAY WASN’T OVER YET, after I picked up the kids at the new place, went home, made dinner for them, and then directed the boys to write their names on the school supplies that BFF Heather took the time to buy for us.  That means about a million things needed names written on them.  Well, we only had time after dinner to put names on half a million things and jump into the superminivan and dash off to Open House at the boys school.  Charlie had asked me to wear one of the newly borrowed wigs to the school so I didn’t embarrass him, so halfway out the driveway I remembered, drove back in, grabbed the hair and off we went!  (BTW Heather, I’m giving you another BIG HUG for that incredibly thoughtful act……to save me the hassle of pulling together all the school stuff!!)

OPEN HOUSE WENT WELL, boys behaved, even the incredibly anxious child, they were nice to their teachers, nice to each other, found their desks, put away their stuff, nobody got mad, nobody whined, nobody yelled.  Not even me.  So, it was a resounding success!  And school starts in ohhhh about 32 and a half hours.  But who’s counting?

THE REWARD FOR A GOOD VISIT TO SCHOOL was a stop to see Bill’s chickens before we went home.  The kids had fun feeding them yummy weeds, and chicken delicacies, beetles and worms.  I got to help pick tomatoes and drink a beer.  The weather was perfect.  The sky was beautiful.

Arrived home late, Lou went out for Chinese food, so thankfully I didn’t have to make dinner.  We all ate together like a family should…again with no whining and no yelling.

An incredibly productive positive day.  Lucky lucky me!  Can’t wait for tomorrow! 

 

 

*Maumee Valley United Univeralist Church website is: http://mvuuc.org/  check out the calendar…if it sounds like something you are interested in, please come.  Anyone of any faith is welcome!

**I know I have mentioned this before, but it is worth mentioning again…if you know anyone diagnosed with cancer in NW Ohio, you must refer them to The Victory Center.  All services are free for cancer patients.  This organization is worthy of your support…..your passing their information along and/or passing a check their way.  Check them out:  http://www.thevictorycenter.org/

A short list of the things I miss

August 23, 2009

Last night Lou and I saw the movie Julie and Julia.  It was great, especially Meryl Streep’s portrayal of Julia Child.  Wow!  WOW!  WOW!!!  And all the food………..ohhh my goodness.  I loved it, loved it, loved it!!  When I woke up this morning, I couldn’t stop thinking about the food.  And then I realized just how much, how terribly much I miss “the food”.  I think one of the things I have missed the most this summer is not being able to COOK.   Oh, I can kinda’ cook.  I can make a basic dinner with convenience foods and a few fresh ingredients.  I have enough stamina to make it through the grocery store, and get the food into the house.  I have enough strength now to be able to get the Caphalon pans off the rack and onto the stove.  But I have discovered, I must keep it all very simple, or else I run out of steam before the dish is done.  I can’t even tell you how many beautiful bunches of basil have been denied the opportunity to become a perfect pesto because they wilted into oblivion in my fridge before I had the opportunity and energy to put the simple recipe together.  And the swiss chard, especially the rainbow chard…sighhhh…I just felt so so bad, and so sad to throw several bunches out over the last couple months.  Beautiful rainbow chard gone to waste is a terrible thing.  I have started with great intentions, and think a recipe through carefully, plan around what I anticipate will be “my good days” purchase the ingredients ahead of time, and somehow it frequently hasn’t happened, but certainly not for lack of desire or will.

I also miss strength and stamina.  Just pulling four dinner plates out of the cupboard takes effort.  Actually I can’t even do that, it’s more like two at a time, and even that is not all that easy.  Closing the back door of the minivan…that hurts, too.  Even pulling weeds out of the garden requires planning, have to save that for the “good days” and all I can manage to evict then are the shallow rooted invaders.  This lack of upper body strength makes me feel so oldwhen I have never felt old before.  I am working really hard to continually, everyday, try to do a little more, but it seems like I take two steps forward, and then one, and sometimes two steps backwards.  The lymphadema issue on my left side, that is a real thing.  So, I guess I really miss those lymph nodes, too.  All these years I have taken them for granted….well no more.  I’m grateful for all the lymph nodes I still have left.  You should love your lymph nodes and appreciate them for all they do.

I miss fearlessness.  I didn’t realize until this year, how relatively fearless I have lived life.  In fact, I don’t think I really experienced much fear until I had babies.  When I had babies, they came with “parent fear”…if you are a parent you know what I am talking about….the fear that something, someone, some unknown factor will hurt your beautiful and perfect child.  Of course, “parent fear” comes and goes with the news stories of the day or the shriek of a child…..  But now….geez…cancer……somehow it invites itself into your tissues and divides uncontrollably.  Then, if you are lucky like me, you find it before it really threatens to kill youand get it in a body part that is non-essential (sorry about that breasts), and a good surgeon can “cut it out”.  But you know what they can’t cut out?  That nagging fear that some how, some rouge cancer cell snuck out of the core tumor and has been hiding from the chemotherapy, is out of the line of fire of radiation, and just waiting to make a ‘comeback”.  The small discomforts of normal aging now make you think with a paranoid edge.  Could that nagging backache be something bad happening in my bone marrow?  How many times have I had that little pain in my head….and has it been in the same spot….and maybe I should mark it with a “Sharpie’ so I can keep track of it…maybe I should make a log of the times I’ve felt it…..  I don’t know how to find the balance between merely paying attention to my body and being paranoid about every little thing, little pains I feel.  I don’t like it much, being paranoid.

Yesterday I made a trip to Office Max to buy one of those rolling cart things for when I do eventually return to school (hopefully by the mid to end of September) because, of course, I’ll probably not be able to actually carry stuff back and forth like before.  While in the cashier line, I saw this pretty teenage girl, I kind of didn’t recognize her at first…and realized it was Emily, a quiet and thoughtful student I had in my class for two years in a row.  Boy, over the summer she has grown, looks more mature.  I chatted with her and her mother for a few minutes as we all walked to our cars.  I put my bags in my car, got in, and surprisingly and uncontrollably burst into tears.  Wow…what was that all about?  I think I just miss teaching, I miss my school, I miss the camaraderie of my teacher friends and fabulous secretaries, but most of all, I miss the kids.  Seeing a student really hit me right in the emotional gut, I’m not where I am supposed to be right now.  I am supposed to be in the classroom, with all the ups and downs of teaching, it is all about connecting with kids, and helping them learn and grow and become more mature.  And I’m missing it.  Yea, I know I’ll get there, but today I’m missing it.

There’s lots of other things I miss too, like having free time.  I’m sick of taking every available moment to study my treatments options, filling out medical paperwork, researching medical facilities and doctors, etc.  I know that it is shallow and only temporary, but I miss my hair.  In air conditioned rooms, my head is cold.  With cooler temps finding their way to Ohio, my head is cold.  I miss planning anything.  I always have to think, well, if I am OK on that day I can…..  I hate having to live one day at a time.   People who tell me to just live one day at a time don’t actually have to live their life that way.  It is easy to say, very hard to do.  I miss taking “feeling good” for granted.  I didn’t realize how most of my life I always felt good.  Now, when I feel good, I really notice it and appreciate it so much.

Sigh.  I’ll quit whining now.  At least for today, I get to go hang out with the Unitarians.  And that is something to be grateful for.

mostly better

August 21, 2009

Thursday

Today would have been my first day of school with students, but no, stupid cancer keeps me out of school for awhile yet.  Doesn’t have my mind though…I woke up with a fabulous idea for my “reduce, reuse and recycle” unit involving a pair of pants, two separate service projects and a small personal project.  I love it when design or lesson ideas are created in the subconscious mind.  A nice confirmation for me that my brain does have another channel other than cancer, chemo, and now, radiation.

I had the joy of taking my kids to register for their school today.  This is the last year they will both go to the same building for school until High School!  I was glad to be there, glad to meet their teachers, but after about an hour, I just hit my limit.  What used to be a normal thing, a duty that you wouldn’t even have thought twice about “having enough energy” for was suddenly too much for me.  I am so tired of this unpredictable nature of my current existence……  And I thought I was doing so well.  But there I go whining again.  Sorry. 

 

mantras’ of gratitude

August 19, 2009

So, here it is 6 am and I’ve been awake for an hour, even though I shouldn’t be because I fell asleep way too late and woke up too many times with teacher design ideas in my brain.  Could it be that my body just thinks it is going to go to school today or tomorrow, or tomorrow after tomorrow just because it is late August?  Wow….could this be body memory at work?  What a powerful thing….. 

Of course I know that I am not returning to work for three to four weeks, depending upon my next chemo infusion and whatever side effects may or may not lay in wait for me.  The mantras that I have quietly been whispering to myself  are:

 “embrace and rejoice in the final chemotherapy of your life”

“appreciate these powerful medications that will eradicate this destructive force in your body”

“appreciate the medical staff who personally care for me, for their knowledge and expertise will help keep me alive”

I know, it sound weird coming from a Unitarian, all this “praise and rejoice” kind of stuff, but yes, Unitarians DO give thanks and appreciation to the forces and people in the Universe who make life better. In addition, I am ever so grateful for my good job, with a good employer, that provides me with good health insurance.  Everyday,  every  single  day , I have thought, “where would I be without insurance?” and heaven knows I have lived at times without it….always due to employment lapses, or employers not able to provide insurance…….  I’m not going to go into a political rant here…..just so happy that my job, my teachers union has negotiated a pretty good insurance policy for all of us in the group.  OF COURSE, God forbid I ever lose my job or reach my lifetime maximum benefits, because I bet my “file” is now tagged somewhere in the insurance world as “high risk” because of cancer.  A cancer that, of course, is NOT lifestyle induced.  This one wasn’t my fault.  Thank God.  I can’t even imagine how a person who smokes all their life must feel when they get lung cancer or emphysema.  Or people who worship the sun, and “suntan” like crazy…..how must they feel when their Dermatologist launches into an explanation of skin cancer?  That would be a terrible feeling of stupidity and guilt I imagine.

Well, enough of that rambling on.  I am just grateful that I have once again woken up to a perfect day (I’m telling myself that anyways) my crappy hot itchy skin rash  hasn’t found any new destination  points on the topography of my body to invade (yet) today, and that is something to be grateful for indeed.  Today is going to be a great day even if I don’t get to go to work.

 

not much better

August 17, 2009

Well, it is Monday morning, and it is the first day of the new school year that I am missing work.  Well, not a student day, but a Teacher Inservice day.  This is one of those work days that some teachers quietly grumble about, but I love teacher work day.   Seriously.  I love going in, and being PAID to sit and listen to whatever it is my administration thinks I need to know.  So this whole cancer odyssey that began way back in February….is going to mess up another school year for me, or at least the beginning of the year.

I went to the ER of Flower Hospital yesterday as recommended by the Oncologist on call at U of M.  They called my yucky hot and itchy rash a drug reaction, gave me a shot of epinephrine and some meds to take at home.  So far, I only see a slight improvement in the worst areas, but overnight my hands and wrists have swollen and are uncomfortable.  I am really starting to worry now that this condition can not possibly be gone by the next infusion date, 11 days away.  If I am refused my last infusion, that will just set everything a week behind, including returning to work.  I don’t think I’ll be able to handle that.

I so much want to just feel normal or whatever my “new normal” is and I want to feel like I am taking part in normal life things.  I don’t like what my daily life has become….it has been a summer of constant research into what is the best decision to make, how to best live with unpleasant side effects, how to avoid the worst side effects, and how to just live through it all.   All the while trying to put up some kind of front of “normalcy” …….. pretending to be just fine, when I’m not really.  I look forward to the day when I can be cheery and really feel like it.