Thursday, January 31, 2013

Thankful Thursday

God pours down blessings; it's up to us to name them, acknowledge & remember them.

I am thankful for a little brown bear from a church lady.  She brought it over on Sunday afternoon, and "Bo" has taken up residence on my pillow.  On the mornings I work, I am out the door in the dark before Tom gets up.  Every evening, I have found Bo sitting on my pillow, with the bed neatly made.  Tom has not traditionally been a neat bed-maker - just pull the covers up so there is a flat spot to dump the next basket of clothes.  While I hate that I have Bo, it makes me mushy to see him lovingly placed on my pillow.

Typing of beds, I am thankful for mattress pad heaters.  We keep our house fairly cool (68ish), and thermoregulation has been a problem of late.  It supposed to get down to 8 degrees tonight.  The bedwarmers got turned on over an hour ago, and I can't wait to get snuggly.

I am thankful for long phone calls, and warm receptions to "tell me your story."  I spent over an hour talking to a Survivor from town yesterday.  We cross paths at least weekly between Scouts and school, but I didn't know her story.  I'm not great at reaching out for help or looking for mentors in this walk.  I am glad I did.  There are a few more folks on my mental list of people to talk to, because it does help.

I am thankful for good days at work.  I was off both days I was scheduled last week - Tuesday as a Mental Health Day and Thursday with the surgeon appt.  Monday, I was in my favorite but crazy-busy Surgery/ Burn/ Trauma ICU, but felt like I was running through sand all day - never quite moving fast enough.  Tuesday and today were both floor days, and a much easier minimal-brain-cells-required pace.  I love my ICU, but sometimes slow and steady floors is a nice change of pace.  And I am thankful for my coworkers.  They make the rough days better, their lives and antics are a much-welcome distraction, and their calls to check on me are oh-so-helpful.

And that bed is calling...

Tuesday, January 29, 2013


The first doorway was the Plastics folks.  Really, they aren't very exciting.  The big surgery to chop 'em off.  The almost as big surgery to rebuild 'em.  The small surgery to make nipples.  And the office visit to tattoo.  That was an easy doorway to walk through.

The next doorway belonged to the Oncology office, with no appointment.  If you talk nicely and use your manners, and don't care what doc you get, and call them from their own waiting room, you get an appointment.  Friday afternoon, Folks.

The next doorway was one of the harder ones in this journey.  I walked by it three times.  If I crossed it, this must be real.  It was the Cancer Care Center.  The touchy feely emotional support place.  With the wigs.  And the make-up from the American Cancer Society.  And all the pamphlets on every possible topic related to every kind of cancer.  I have plenty of reading material now, thanks.  I didn't expect to react as emotionally as I did to just being there.  With the doctor discussions, it's not really me.  I can be very clinical and detached, unemotional.  I was glad there were storms rolling in, as an excuse to book it on out of that doorway and away from being vulnerable.

The last doorway of the day was the Missions Trip to Guatemala.  Don't tell the Methodists, but it's with the Baptists across town.  Really, it's with one of Evan's best buddies, adopted from Guatemala as an infant.  I'm just along as his chaperone.  I still don't have a clue how I think I can make that work, but it is a step out in faith, financially and logistically.  Need chores done?  I have a boy willing to work.  We've got a month to ponder things before it's commitment time.

One more doorway planned - mani & pedi before the onc appt on Friday.  Because self care is important.

Monday, January 28, 2013



Still waiting...

S.T.I.L.L W.A.I.T.I.N.G.

And I might be yelling, typing in all caps.

We got the biopsy results a week ago.  It was MLK Day.  A WashU holiday.  No, I could not make an appointment because the Scheduler had the holiday off.  So they took my information, and called me back.  On Tuesday, they told me I had an appointment with the surgeon on Thursday.  And I stayed home from work and Tom rearranged his day to come with me, thinking this sounded like progress. The surgeon really couldn't tell us much of a plan without oncology's input.  Surgery would offer their opinions and put a chart together for me and Oncology would review it and get back to me by Monday at the latest with an appointment.  Plastic surgery managed to find me at work today, with a phone number I do not give out.  I was impressed with their resourcefulness.  I will meet with them tomorrow.  To discuss future cup size?  To come up with a more concrete plan from their perspective, the non-ticked part of my brain knows.  And Oncology?  They can confirm that they have my chart, and it will be sent to some as-yet-nameless person to be reviewed so they can call me to schedule an appointment in the next three to four days.  And so it cold be yet another weekend spent waiting, waiting. 

When I call you, choking on tears, fears and lumps in my throat, can you please DO BETTER THAN THIS?  We take Excellent care of people.  We are coached and counseled and prompted about our excellent care and how to provide it.  This is the reception a new patient receives.  I am so frustrated and disheartened with my own doctors.

Tomorrow, I will focus on my patients, providing Excellent care.  And I will meet with Plastics.  And I will chase my kid all over the county, and to a Mission trip meeting, because we have talked about and prayed about a trip to Guatemala in August.  I'm not sure I am the one taking him (aunts? uncles?), but we will plan and move forward in faith that even if I can't go, someone will take him.  Life goes on even in the midst of chaos.

Friday, January 25, 2013

Pivotal Praying

From Lynn's book, which is to say from the book Pivotal Praying, by John Hull & Tim Elmore, p.26.  Can I tell you, Blogworld, that I just flashed back to Mrs. Horton's 8th grade English class and how to properly write a citation?  Pretty sure I haven't written one since 1997!

A Pivotal Prayer When You're In Crisis

God, I cry out to you.
The news that's just hit me is so hard to bear.
I don't know what to do.
I'm angry, I'm hurt. I'm confused.
So, Lord, I call out to You.  Please hear my prayer.
Give me strentgh to get through this mess.  Help me to make wise choices
and not to say something that will
just make things worse.
Please, don't let this thing get any worse than it is.
And God, help me not to do anything stupid.
This is going to take a long time to get through;
and right now, I do't feel like I'll ever get on top of it.
So, here it is, Lord.  A big mess.
Thank You that You're here to show me
how to clean it up.

Now you can have your book back, Lynn, since I just told you I was taking it, with no real return plan.  When you gave it to me, I was still too broken to even read it, let alone pray it.

This prayer is for me, three or so days ago, if you are worried about my mental heath.  And it's here now just so I can find it later.  I imagine when I find out more timeframes next week, I'll need it again.  My head is on straight again and I am a functional member of society. 

I know just from the surgeon that this is one long ugly road with lots of surgical scars.  The oncologist will decide if we chemo or slice & dice first.  The advantage to chemo first (going against the "I need to get this out of my body urge") is the ability to determine what the tumors respond best to.  If you cut them out, it's best guess.  If you leave them, poison them, and re-scan them, you see them shrink a lot or just a little and change drugs appropriately.  Whichever is first is well above my medical education level, but I am learning fast.  Maybe when it's all said and done, I won't feel so dang uncomfortable and lost in my Bone Marrow Transplant patients charts.  Back to me, there will be 6 weeks of 5x/week radiation following the chemo & surgery tango.  Then, we can talk about how you restore the body of a 38 year old who never did look like Cindy Crawford, another 4 week or so recovery time.  And somewhere in there, there was talk of the ovary I have left and whether or not it comes out and when. I can't remember if it was related to the then-pending HER2 results or the genetics and BRCA 1 & 2 drawn yesterday.  16 years in critical care and I am lost; my gosh I can't imagine the feelings magnified with no medical background.

Tomorrow, life goes on, kinda like normal.  Scout stuff.  Sunday: church, clean house, prep for the week ahead.  Monday: WORK!!  while I still can, and wait for the phone to ring.  Tuesday, I'm on the work schedule, but it's too far to see.

Thursday, January 24, 2013

Thankful Thursday

Time to take a minute to be thankful, for there is plenty to be thankful for.

For my Angel of Hope, hugs and stretchy maternity clothes.

For Tom's job change.  Sorry to the new insurance folks, but his new boss is flexible, and had he stayed where his was, that check would have dropped uncomfortably so.

For my Women of Faith ladies.  We started a Tuesday night group 8 or so years ago with a Women of Faith conference, and the folks have changed some, but they are a force to be reckoned with!

For my heart to find true belly laughs, wit and humor today, finally!  I am really not a cryer.  I am not pretty when I cry.  It gives me a headache, and clouds my contacts, and my nose is all stuffy and makes my cpap mask very ineffective.  I wanted to tell the FB world on my terms, but could not until today find a way to make it not sad and tragic.  Today, I found my boxing gloves.  My prayer today has not been "God, dammit!", at least not all day.

For my childhood (hmm, 7th grade at Jeff Jr, I think) girlfriend sending me a book that I didn't have the brain cells to find on my own.  Our lives are mostly on FB and Christmas cards, but there is a jr high, high school, and college (may I encourage you to find a Wesley Foundation, high school folks?) timeline that we were together.  She is going to seminary now, with 2 kids and a husband along for her ride, and that rocks my socks off that she was brave enough to answer the call.

For my husband, who says breasts are optional equipment.  We have had only minor bumps together, and I hope this is the only "for worse" that I give to you.

For the CoMo Rainbow girls, who are picking out button down pj's.  Thank you!  But I DID tell you to raid your closets or good will, not raid your checkbook, dang it!

The plan as I know it, which ain't much.  Met with the surgeon today, but still need to meet with onc, plastics and rad docs.  We drew blood for genetics given the fam hx, as it plays a role in my boys as well as my nieces.  I am comfortable with a bilateral mastectomy with left lymph nodes, as is the surgeon.  So, no dates to give y'all, just more hurry up and wait for the phone to ring.

Thankful Thursday

I promise, there will be some thankfulness later in the day. The days get better, more or less.  Docs later today, then prolly family time to process their news, and Thankful Thursday in the tradition of two of the blogs on the blogroll, Walk in the Parks - my friend and co-worker, Jeremy (hey, go find his indiegogo thingy and toss him some $$ for me, please!) and Ronnie Sharp, who I have not met in person, but is a mover and shaker in the CF world.  If I run out of steam tonight, then maybe it will be Thankful Friday.

Tuesday, January 22, 2013

1/22/13... what I know today

So, the blog address is out in the public.  Sometimes I write for the rest of the world, and sometimes it's just for me and the rest of you are along for the ride.  Hang on, cause it's gonna get bumpy.  But if you're here, you've figured that out already.

I know that insomnia sucks.  Benadryl at 2 am is equally awful, at least at 7 am.  How bout some Tylenol PM about 5 minutes after dinner?

I know I love to fall asleep listening to Tom read The Hobbit to the boys at bedtime.  One of the few perks of a tired mom with the same bedtime as my boys and a small house.

I know that I have made it through exactly 1 phone call not in tears today.  That is one more than yesterday.  And it was my mom, who swallowed her lumpy throat more than once.  Progress.

I know that I really like purple more than pink.  I don't own a thing pink!  Maybe I will learn to wear it graciously.  Maybe not.

I know my support system is bigger than cancer.  I just wish I wasn't taking all of the rest of you down this path with me.  It sucks, and I hate the collateral damage.

I know 5th grade moms are awesome, and 1st grade moms are growing on me.  Hey, we've had 4 less years to bond, gimme a break.  I am sorry to be the one who introduces your boys to cancer and heads shaved in solidarity.  Once again, the collateral damage.

I know that lunch kidnappings are a good thing, and should happen regularly.  Last week I was fully independent, worked closer to full-time than part-time, and managed my own life.  This week, the biggest broken part is my head.  Next week is too far away to predict, but I am afraid of the isolation and already miss the lunch table gossip.  And perhaps the paycheck, too.

I know my kids are well taken care of, even if school won't let me put on their registration form   "Who can we release your child to?"  "Anyone who has my cell # programmed into their phone."

I know I am not going to Google the information on the pathology reports, at least not yet.

I know tomorrow I will wear my contacts, and feel better, and cry less, cause normal matters.

I know we go to see the surgeon on Thursday, and map out a plan to move forward rather than run in place.  Feel like a gerbil going nowhere.

I know that this is God's plan, cause it certainly isn't mine!  And He will walk it with me, and Jesus already walked it for me.

Monday, January 21, 2013

A week since I last posted, and a lifetime.  Biopsy was Wednesday, Jan 16.  12 samples taken.  Positive for cancer.  The armpit lump is indeed a lymph node, with cancer, so that means metastatic disease.

Today, we told our kids.  They were unfazed.  Excited at the thought of being able to shave their heads with me.

Today, we told our families.  My mom, with the history, and my sister with her.  My dad, having danced this dance with 2 wives, one who didn't beat it.  My sister-in-law, the first of the family told, with whom I can pick up from a month of not talking like we saw each other yesterday, not 500 miles between us.  Tom's family, cracking jokes all along, as I was out of tears by then.

Today, we told our kids teachers, hoping they will protect & love on them when I am down.

Today, we ate pizza and played video games at Incredible Pizza, holding onto a sense of normal for our boys on a long holiday weekend.

My boss, who told me I couldn't work tomorrow.  She understands my kids are cuter than she is, and puts up with me anyway in the balance of work and life.  They have raised me at work - 14+ years, from a not-quite-new single grad through a sort-of workplace relationship (my locker partner set me up with her brother) and through 1 kid, infertility, finally the 2nd kid, now entering into the tween years

And our church and our friends, loving and holding us, praying us through this season.

The grief comes in waves with the re-telling of the story.  I need to move on from that place and onto Chapter 2.  I am fumbling with the boxing gloves and cancer-kicking boots, not unlike Colby learning to tie his shoes in kindergarten.  But I will get there soon.

I should have an appointment by the end of the week with the Barnes/WU folks.  There is no place I would rather be treated.  With it will come an MRI and CT, surgery, chemo and radiation, all in short order.  Probably within 2 or so weeks.  The whirlwind begins.

Monday, January 14, 2013

HPI - History of Present Illness

Tom started a new job in early December.  I spent most of December with the typical cough, cold, sinus crud, trying not to go to the doctor since we had insurance, but no insurance cards.  Gee, a headache & hassle.  New Year's Eve, my arm pit was tender.  Hmm, a lymph node swelling now from the sinus crud?  I put my head in the sand, bought a little time & went to my mom & sisters.  Five cousins together for two whole nights... priceless!  I think my mom is still recovering. 

We came home, I worked the weekend, and noticed on Monday that my ring & middle fingers sensation was off, like I had been out in the cold, but my hand wasn't cool to touch.  Tuesday was not any better, so I knew I couldn't wait around for insurance cards anymore.  I called on Wednesday morning and had an appt for 830, a mammogram & ultrasound done by 1130.  That, Folks, is why I like community medicine.  The mammogram showed a second spot as well to be dealt with.

Now it's Monday, January 14.  My mom had her first mastectomy this week (it was my brother's birthday) in 1986.  We watched the Challenger explode over and over again after school when she was recovering, laying in my parents bed with the TV and cable, tears streaming.  Her second was Easter week 1992, my Senior year.

Saw the surgeon today.  He tried to aspirate the big bothersome one, with no fluid return.  Not what we expected.  It's big, it's superficial, ya can't miss it!  And he didn't, trust me.  Its tender and bruised now.  18 gauge, inserted twice.  I could have used a bullet.  So we roll into an ultrasound guided needle biopsy on Wednesday for the one I can feel and the one I can't.  Ask me Thursday if I am going to work.  He said I could.  It's not even conscious sedation, so I can drive home.  No, thanks, I think I will take Tom.  And maybe that bullet to bite that I didn't have today.

What I know about the little one is that it looks like a cyst, but has irregular borders, ~ 1 cm.  Pea sized.  Who likes peas, anyway?

What I know about the big one is that it is 5 cm, moveable, hard, not fluid filled.

Nobody except me has jumped off the cancer bridge, and I don't go far into that dark corner.  The boys know nothing until there is something to know.  I love school & working part-time!  Tom took the lunch (several) hour to go to the doc with me today, and fixed the always comforting grilled cheese (with an apple and water, Leslie!).  I have lost 17 lbs, been kinda stuck there, and have to weigh in tonight.  I refuse to let this derail WW this time around. 

And that is the HPI.