Thursday, February 28, 2013

Thankful Thursday

God's blessings, remembered...  some of them tangible, some of them intangible, all of them meaningful.

For these two guys... who say "Fight Cancer!"  Evan and T have been together since pre-kdg, when they switched backpacks on the pre-k bus.  Now they both sport bald heads in support of me.  I love it that Evan wanted to shave.  I think I love it even more that his buddy did.  And for their teacher and principal, who will let them wear hats, cause it's still cold in the middle of the middle west.

For cold canned pears and pink charm bracelets.

For a lunch made, without asking by me.  It just shows up in the fridge on Saturday and Sunday mornings.  It's the little things that matter.

For a garage door opened, waiting for me to tuck the car in.  If I had to open it, odds are the car would just sit outside.

For random texts, just to check on me.

For good anti-nausea meds.  And magic mouthwash.

For good local take-out.

Tuesday, February 26, 2013

Chemo Round #2

It's Detox Tuesday, I do believe, or maybe Ketchup Tuesday sounds better.

Friday was spent with Beth, my friend, my pastor's wife, my former duster.  She brought me crazy gold glitter guitar glasses to rock out to.  Loved it!  The day wasn't so bad, all things considered.  We were done with all things Siteman related by mid-day, headed home for a nap.  She picked me back up later in the afternoon for the head shave.  Thursday, the hair was falling out 5 strands at a time.  Friday, it was more like 10-15 strands every time I ran my fingers through my hair.  Be gone with it, then.  I didn't want a mess all over fresh bed sheets.  The shave - rather anti-climatic, I believe.  Deb, my hair lady, shaved, we hugged, and went home to just relax.  There were no tears, just resolve to deal with it.

Dinner was wonderful, thank you, Meal Train! 

Saturday and Sunday were quiet except for the Scout stuff.

Monday was a trip to the mall for some more scarves and hats, and to pick up the car.  Blessed to have a good car, hate the car repairs and maintenance.  New exhaust recirculator and 4 new tires.  Thank you, Al's, for being my "easy button" guy yesterday.  I do like small-town businesses where I can drop it off, ask him to fix it, and it's done 2 hours later and cheaper than the dealer.  And Meal Train amidst sick kids.  Feel better, Little Miss J!  Monday night was Evan's music program, structured like a competition.  His band was the first to play and the first done, thank you for that!  He likes his sax, I do believe.

And today brings us to paperwork, laundry, a nap.  It's rainy, cold and gloomy, so appropriate.  The neulasta is kicking in and makes my knees hurt but my blood counts stay high.  Love-hate on that front.  And detoxing from the anti-nausea meds means rebound headache.

Ahoy, Matey & the Bishop

Welcome to the Scout birthday party!  Saturday night found us in our finest pirate dress for a great evening of fellowship.  No rockets or cars to make or race, no meeting agenda, just fun. 

Sunday found us at the Cathedral celebrating some religious awards.  Colby received his God and Me award from Bishop Schlarman.  Nice job, Sir!

And Grandma received the St. George Award from the Bishop and Father Gene, our previous priest.  Nice job, Ma'am!  Someone has to nominate you for that one, so it was a fun surprise for her.  And I'll try and work on the camera settings - I am not a photographer.

And I received a nice little prayer & blessing from the Bishop, too.

The outing was a good choice.  I was torn between church and the awards, and knew the energy wasn't there for both.  The family won.  We frequently can't decide if we are Cathodists or Methoholics, but hopefully we are raising our boys to love God and trust in Him in all situations.

Thursday, February 21, 2013

Thankful Thursday

God's Blessings remembered in this journey of life.

This week, I am thankful for cold apples.  About the time you start feeling really good from chemo, then you get the mouth sores. It takes a few days for the skin to slough off from the inside of your mouth.  So as I was at work last weekend, and my lunch was in the fridge, I realized just how good chilled apple slices tasted as an ice pack of sorts for my tongue.

I am beyond thankful, humbled is a better word, for my community.  A friend set up MealTrain for me and the chemo Friday and still-foggy Monday dates were plugged into it.  I now have scheduled meals through the end of chemo.  There are folks I expected would volunteer, but there are folks I only casually know who are willing to cook for us.  Wow!  I never doubted I was walking through this being held by others.  They are the hands and feet of Jesus, personified.

I am thankful for annual maximum insurance out-of-pocket caps.  This isn't cheap, but as the money-manager in our house, I had fears of bankrupting us with hospital bills while my work income is sketchy at best. At some point, the bills will end.

I am thankful for pink bags left on my back porch with music, snacks, and a fresh supply of crackers.

I am thankful for my chemo bag all packed for tomorrow, and the hands that prepared it.

I am thankful for a cool party store that had pirate hats in stock.  It's a pirate theme Saturday night for the Blue & Gold - Scouts birthday party, and I have a pirate hat.  The hair is starting to fall, and if I can't have my hair til then, at least I splurged and bought the hat.  My Tigers are getting their rank patch that night, and I don't want their parents to remember the sick Den Leader in their pics looking back 4 years from now when they cross over to Boy Scouts.

I am thankful for Facebook encouragement.  I love it!

Monday, February 18, 2013


Hey, BlogWorld, I am just busy living life on the good days and weeks.

There is a pattern to life, if you are wondering.  Chemo is crap every other Friday.  I am useless til about Tuesday, coming out of the drug/ fatigue coma on Wednesday and Thursday, and good to work the weekend.  So it's a chemo weekend or a work weekend til mid-May.  As chemo progresses, there is a cumulative build-up and it's harder to bounce back, so I am doing as much working as I can while I still can.

My sister and mom did the wig thing with me on Thursday.  Hair should fall out this weekend.  Anyone up for a shave party?  We met the Radiology Oncologist as well.  He is a nice, very soft-spoken guy with I am guessing an Indian background, but natively english-speaking.  Was that politically correct?  He had the nicest manners in asking if he could remove my gown for the 40th cop-a-feel of my month.  It was a good, if anxiety-producing day.  Glad it's done, won't wear the wig often, but will not look sick taking care of your loved one.

Friday was just errands, I think.  Kids teeth, haircut for the wig, sports for Evan, Catholic Chicken, home to bed.

Saturday and Sunday found me back at work.  They were good days.  I was challenged by a situation at work on Sunday, and I was Marcy the RT, and it was wonderful to just be that. In the adrenaline, I was as good after one chemo as I was before cancer.  I needed that validation, I admit.

Here's what we found today.

Bald Eagles about 20 miles from our house.  They are at a favorite suspension bridge that we watch fireworks from on Independence Day.  It was cold and blustery with rain moving in, but it felt good to get out and do something with the day off.

And Evan trying to teach Colby how to skip rocks.  Colby just wanted to throw the boulders in.

Tomorrow is a new adventure in Pulmonary Rehab.  I would like to work while I can and that is where the need is, so sign me up.

Thursday, February 14, 2013

Thankful Thursday

 God's Blessings in tangible ways...

For "secretion and excretion management."  At work, I am the secretions gal.  It's my job to make you cough and deep breathe, whether you want to or not.  The care package came from a friend, neighbor, co-worker, who works on the urology and colo-rectal floor at the hospital.  It was tp, paper towels, lysol, hand sanitizer wipes and kleenex, in bulk.  And it was the best belly laugh for me!  I love her sense of humor.

For the Freezer Fairy.  My kids are oh-so-happy to have pizzas and breakfast sandwiches!  I am oh-so-happy to tell them to fend for themselves sometimes!

For the Chemo care package - ipod loan, snacks, dvd player with a couple movies, books; I was set.

For random books of hope in the mail.

For my mom's help this week.

For baskets full of sunshine.

For another year with my husband.

Wednesday, February 13, 2013

Ugh, that sucked! Round 1

Welcome to life post-chemo.  Chemo was Friday.  This is now Wednesday.  My hair has changed texture already - no bueno, but it's gonna happen.  My mind has been to mud and is on it's way back.  Nothing tastes good, already.  There is a vague nausea still, but crackers and water are my friend.  My bones hurt - the neulasta keeping my blood counts up.  I have no energy and still not sleeping well.

I made brownies yesterday... the first thing that has felt normal.  I took Colby to school today... normal.  The church ladies are eating out for lunch later... perhaps a waste of money for my appetite, but normal.  I have a list of things to accomplish on the bathroom mirror... the ultimate dry erase board.  Normal.  The laundry is spinning and dishes waiting.  Normal.  No clue what to get Tom for his birthday.  Sadly, normal.

The hair adventure tomorrow.  The American Cancer Society wig lady.  I will send my mom home tomorrow with my sister, and find life on our own again on Friday.  No school for the kids, so a lazy day at home, minus the dentist x 2, Parisi speed school for Evan, and probably buddies to play with.

Saturday, February 9, 2013

Day 2 after chemo

Someone pointed out I was supposed to conserve energy today.  Oops.  I was awake and medicating by 7 am.  Drugs are my friend, Folks!  I just sat in Tom's big chair and snuggled with the TV and my phone.  I watched C's swim lessons since I felt decent (ok, bag of crackers and bottle of water lever left my side!)

We made a short Walmart run and the boys wanted McD's,  Can I not go in, please?  I was done for by this point.  They brought it back to the truck and ate.  I was okay with that.  Vanilla shake and a dozen or so fries for me.  And some more ativan and a nap for the afternoon.

A girlfriend wants to get back into exercising.  I could be her slow walker at this point.  She has to find her own runner.  We did walk a little over a mile just before dinner , and it felt good.  We could walk and talk, and I wasn't too tired until the end, and she felt good - my pace didn't hold her back, yeah!

Dinner - loving the Women Of Faith girls cooking and their leftovers!  Boys are farmed out, 1 temporary, 1 overnight, and Scout Sunday tomorrow at the Methodist church.  Love me some church support, love me some Scouts, it will be a good day.  And a nap-tastic afternoon again I imagine.

Chemo Day #1 & Scout Dinner

So here it finally was, and there it finally went.  I did not wake up with my game face on, so was randomly tearful though the morning.  Had to be there for the echo at 0645, they don't unlock doors & clock in til 0653.  I was back by 0700, with a male scanner.  I have a mix of make and female physician teams, and their Go-To Nurses are all women, and this is a women's disease, but it will be fine, I thought.  He had the personality of a rock (learning point for me, as I am not always chatty with my patients!), and was very slow and er, thorough, maybe.  Maybe just clueless.  He told me when we were done that a nurse had to start an iv.  Well, hello, if you had told me that a half hour ago, I would have put this nifty little numbing cream on my port.  So they accessed my fresh and very tender port with no good stuff on it, and what we guess was a short needle, so scared me with a very sluggish blood return, thinking we were going to have problems and get that redone.  Lots of tears of frustration, fear, worry, anger, generally pissed.  In the end, got it done with an iv in my wrist.

Breakfast at the hospital cafe - one of their better meals of the day!

Onto the chemo doc - pet scan found a second questionable shadowing on the left breast.  Well, we are treating it with chemo, and cutting it off anyway, and doing radiation.  Treatment doesn't change, really.  Been worried about my head.  Switching words is too frequent for my comfort - I do it all the time. Adds new meaning to"listen to what I mean, not what I say."  Found nothing exciting there, or anywhere else we weren't expecting.  Woohoo!

Chemo time...  had to wait just a little bit, not a big deal.  Best guess is that at 38, I was the youngest patient there by 10 years.  Or maybe I will look 10 years older at the end of this walk.  As a 1st timer, we got a private room.  Next time it will be in an 8 bay recliner area.  We got a "This is Siteman Cancer" movie, a bag and a notebook.  We all have mental places we can't go.  I have a binder for Scouts, for coupons, my tupperware is matched & stacks neatly.  My cancer papers are all over my kitchen bar, shoved in that small bag, or my billfold, or... so a project to work on to separate out the crap. From the cancer side of things, all have been good to us.  I was settled down emotionally by this point, and ready to go.  My port accessed easily (still tender ater numbed, but its only 2 days old!) with a longer needle and all is well with that.  I got a saline premed, steroids, amend premed, then the red devil, as someone else called it.  I called it kool-aid.

 Then the cytuximab, just another clear iv bag, more saline and we were done.  There was a big snafu between neulasta and lunesta at the pharmacy, but we came home with the neulasta finally.

Tom was with me all day, except when I could have used him during the echo - I wend him to fill up the car before he got into the pay parking garage, and then they wouldn't let him back.  My rational mind realized it was just an echo, but 1 1.2 hours later got long.  I prayed for sweet babies and their folks, since they are much cuter on the screen than a lump of cancer cells or a beating heart that could be damaged by one of the chemo drugs.

The cancer day got us back home at 5 - several hours later than expected, and so much for that anticipated nap.

We switched gears by about 180 degrees and got our Scout Stuff on.  Tom has several shirts to wear depending on what he is doing.  He is Treasurer and Pack Trainer for the local group, leads RoundTable for the Cub Scout leaders in the district, is certified to run bb & archery range at day camps, and spends our summer vacations there.  There are worse things, trust me!  When I say vacation, he says"yes, dear, when and where dear."  I try to respect his Scout commitments, he tries to take the boys to as much of his adult stuff as he can to make that a family event as well.  I have lead our Tiger Cubs through their first year.  We met all of our Tiger badge requirements in January, so I can give out patches in February.  I turned them over to one of the other dads with all the support he is willing to use in our local committee, so my official scout jobs are done for the moment.   Back to where i was going with all this...  it was Scout (Boy, Cub, Adventurer) District Dinner Night.  I knew Tom was getting an award of some sort a month (lifetime) ago, and needed to ind a babysitter.  I did.  I was determined to not let my day's craptasticness get in the way of Tom's 15 minutes of fame.  I was oh so glad to see his sister-in-law there to talk to and sit with!  The entire Scout world does not know my story, as most of them don't know me, but it was nice to sit at a table where they all knew my day was long and awful, and just help me get through this for my husband.  And they did.

Tom's dad presented his Badge of Merit award:

He got involved about 45 years ago, and never really got un-involved,  His role shifted to training adult scout leaders, but he loves to tell a story, and comes to tell a story of something to most of the scout camps when he is asked.  He is tired and retired, but never completely retired or you are dead.

Scouts understands the commitment the adults make and sacrifices from family time, and includes the other spouse in the award.  He got the plaque, knot for his shirt and the certificate, and I got the flowers.  Someone commented on Facebook about how lovingly he is looking at me, no, he is looking at me to make sure I was still standing steady and not running for a bathroom to hurl in.  And he knows that I much prefer to be behind the spotlight, not in front of it.  It was a good night for him, and I am glad it turned out so well.

And 10 minutes after we got home, I took the good nausea and sleepy drugs and crashed for 12 hours!

Thursday, February 7, 2013

Thankful Thursday

God's blessings, named and remembered...

A flexible dentist.  You can't get your teeth cleaned during chemo, so they fit me in early and on short notice.

A great group of coworkers in 44icu Tuesday.  The morning started out rough with a power outage that affected the hospital briefly, but the day got much better with some serious teamwork.

A basket of goodies - candle, hope figurine, notepad - cause I love love love lists, and the basket itself to corral the cancer cards that were taking over my kitchen.

A nurse that promised to medicate me well for all things cancer, and she has!

A husband that works when he wants to call in sick, at work and at home.  He has put in some long hours feeling crummy, and I hope he gets to rest on Saturday.

A good song on the radio.  When I had surgery several years ago, I was driving to work on a Sunday morning and listening to the tail end of the Mormon church service before the 6 am news came on the radio.  Their last song was "It Is Well With My Soul."  I was worried and anxious, and it was immediately calming, and I was settled with whatever the end results would be.  I haven't found that "settled" feeling yet, but "Good To Be Alive" by Jason Gray was a great way to start my day on Tuesday.

Pink fingers and purple toes, and the Early Childhood teachers.  It was so so hard to spend money on something as frivolous as a mani-pedi, when I know the bills will be rolling in and I am not working much. I have loved looking at my nails all week long, and thinking of the teachers that surprised me with that.

Spaghetti Pizza Crockpot Extraordinaire.  One kid said "eh, it's all right."  The other had 2 servings and asked for it for breakfast.  In my world, that's a hit!

My taxi driver.  She has walked the cancer walk with her son recently, and has been my go-to for the more basic questions and general venting.  Thank you for spending port and pet day with me.

Tuesday, February 5, 2013

Random Thoughts

I thought last week I needed a haircut.  I think I will just wait.

How is it that we were down to one bottle of shampoo between both bathrooms?  I bought 3 bottles.  That should last til mid July, I think!

The cancer girl probably shouldn't take care of cancer patients.

Got a letter telling me my doctor didn't fill out the fmla forms correctly.  I am sure I have signed consent for them to discuss my case with my doctor.  So can't they just call my doctor directly and leave me out of it?  Cause you told me my leave was approved yesterday.

My boys are full of hugs, and I love it!

My house is as clean and neat as I can make it.  It will have to do.  The joys of refinancing when you realize you are paying way too much interest if you aren't going to build as soon as planned.  The basement window is trimmed out and the drywall is patched from an old bathroom repair.

My mom is coming on Thursday, and maybe this strong girl needs her mom more than I admit.

My sister is going wig-shopping with me next week.  I am depressed by that thought, but looking for some laughs in trying wigs on.  Should I go for long and black, or short and red, or ???  Crap, I don't want to work in a wig.  And I have never been a hat girl.  This bald thing is gonna suck.  White girls don't wear wigs nearly as well as black girls do.

I haven't had sweets or much bread today.  I am having toast and chocolate milk withdrawal.  Stupid PET scan.  And I will be cooking eggs (or something non-carb) at 4 am, because I am npo for my port at 5.  But the PET instructions for 1 pm say to drink lots of non-sugared water.  Hmm, who planned those on the same day?

The hubs is on his second round of prednisone and antibiotics now.  That ain't good, Folks.  I hope he feels better soon, cause he looks way worse off than me right now.  Between the two of us, it's looking more like a pharmacy than a kitchen counter.

I should sleep well through both procedures tomorrow, as it is way past my bedtime.

Friday, February 1, 2013

De Plane, de plane

From "Fantasy Island," yes?  That is reaching way back into my childhood!

So, de plane as I know it today...

In the next 7 days, I will work 3 of them, get a port and a pet scan, rest a day (probably only if I am tied down!), get an echo to check my baseline heart function, and start chemo.  2-3 weeks later, I lose my hair.  8 cycles of chemo for a total of 16 weeks.  Then it's slice & dice, and 4 weeks of serious downtime.  Then it's 6 weeks of radiation.  Then it's 3 months of cooling-off for my skin.  Then it's reconstruction, with another 4 weeks of serious downtime.  That is my life, Folks, for about the next year.

I will work as I am able during chemo - probably just my weekends and nothing more.  Maybe I can ditch the weekends and work some m-f during radiation.  I am not sure I can stomach 12 out of 14 days in a row at the hospital, but I should be functional to work - just a matter of timing and making sure I have downtime and rest.  That, though, is 6 months away.

My day started out rough - worried & anxious about the afternoon.  Dealt with fmla folks - that is not fun.  There is no category for "it's cancer, I'm doing the best I can, you figure out the dang paperwork!"  I can't have an intermittent and a continuous leave open at the same time.  Last week was filled out as continuous.  Well, now it's intermittent.  But I could turn it into continuous if they would like.  That was followed with repetitive health history info that I don't think the onc doc even looked at.  Most of it, they already had.  Then don't waste my time and brain cells, Doc!  BUT, then it was mani-pedi time.  Some local ladies pooled together & paid for it, which just shocked me.  More tears, but at least they were good tears.  The toes are purple (my high school colors have always stuck with me!) and my fingers are pink, with glitter & a pink heart on the ring fingers.  Valentine's, breast cancer, whatever you want the pink to stand for.  Several hours with the doc, and dinner with the in-laws rounded out my day.

Here is to bedtime and a good weekend at work!

And Shaunery?  You made me cry, here.