Random Wednesday Thoughts

I'm dying for some spring, anything spring-y.  Would love to see a simple crocus blooming.  Woke up to this instead.  That is a pretty monochromatic white.  Even the trashcan is snowed in!

Saw this yesterday before the snow.  It gave me hope.  Glad to have the taxes delivered in person to the accountant, whose office is near Skyview.  Come on, Wyatt, Big Money, Big Money!

Insurance is a mixed bag sometimes.  Tom's cpap machine is dying.  Home health suggested that it's probably time for a new machine for him.  Insurance will pay for us to rent a new cpap machine for $60/ month.  Forever, or until he meets his deductible this year.  Then we start the rental all over again next year.  Hello, I can pay cash for one for $500 and be done!  I hate monthly payments of any sort, and it's not like osa goes away.  Hence the taxes out of my hands early.

We were making the bed yesterday morning and I was crabbing about how I hate the pillow peninsula in the middle that I keep my arm propped up on.  We have never been super-snuggly, but it's kinda nice when your husband reaches out to hold your hand in the middle of the night.  Except the only part of my hand not covered is my fingertips.  I was feeling sorry for us, and Tom reminded me that the pillow pile represented life and survival.  Perspective, Folks.  It's all about perspective.  I will try a pump and sleeve for my arm in 2 weeks, kinda like the leg pumps at the hospital, that I would wear for an hour or so a day, and need to make an appointment to get a more permanent night-time sleeve that looks a whole lot like a giant oven mit covered in pantyhose, fingertips to armpit.  Dang, won't that be romantic!!

Loved seeing these moments last Saturday morning.  Evan is playing Upward basketball, and scored the 2nd & last baskets of the game.  Colby is doing swim lessons at the local rec center.  Trying to keep them both moving in the cold & snow.

Procrastinating my homework.  Yep, believe that is what this post is.  I *hope* I am back at work in two weeks.  Got a group project to do and a paper/ presentation to write before then.  Maybe Evan can teach me how to use PowerPoint!

Health-wise?  Back to the Plastics doc next week.  He will examine & make sure the seroma isn't re-accumulating.  And I hope hope hope he will release me to do some Range of Motion, ya know, before my shoulders freeze and I have to find an ortho doc for that.  And before I go back to work.  If I can't lift 2 lb weights, I can't move 300 lb patients.  I would love to walk on my treadmill.  It's kinda hard to keep my weight in check sitting in a recliner or at the kitchen table reading, when the kitchen is 15 feet away.

One Year Ago

One year ago, I numbly helped others with the annual Pinewood Derby.  I held my elbow close to my chest and defended my left side fiercely from accidental bumps.  This weekend, I enjoyed it as a spectator, still protecting the arm & jp drain, my youngest so incredibly proud of his 2nd place design trophy.  Camouflage and guns win every time, and that's a paint style at his skill level!  And it worked out perfectly that everyone in his den got a ribbon or trophy for speed or design.

One year ago, I sat in the Radiology waiting room of the local community hospital waiting for copies of mammograms and biopsies, and raged against the stupidity that I could not make an appointment at the Medical Mecca because it was MLK Day and the University folks were off for the holiday.

One year ago, I texted a few words to a friend, and had 3 girlfriends waiting when we got home.  That is Girl Power!  The text was "Rally. Where? Both +."  She could translate exactly what I meant, and what I needed.  And I have been held by my church and community ever since.

One year ago, we took our kids to Incredible Pizza as a treat for the afternoon, and failed miserably at reclaiming the day.  They had a good time then, but haven't asked to go back, and I skipped that Groupon when I saw it again a month or so ago!

One year ago, I called my boss in tears, and she said "Take the time you need.  We will still be here."  It hasn't been without it's bumps dealing with FMLA and medical leaves, but it has ended up ok in the end.  I may live in the land of "no work, no pay" but I still have a job to go back to.

One year ago, Tom held me and promised we were in this together.  And he has been there every step of the way, working (hey, one of us has to!) and raising kids sometimes for the both of us.  I love you.  I need you.  Thank you.

I can't wait to see what this year brings, since it has to be better than 2013!

Wonderful Wednesday

I was going to try a Wordless Wednesday, but thought I should update from Sunday night's post. 

Dr. Brandt was called in on Sunday evening for another lady's complications and stuck his head in to see us, too.  He didn't have a clear plan for the daylight any more than I did.  So... consents were signed for any possible scenario, and back to the OR on Monday we went.  He opened the incision, washed out with saline and antibiotic solution, placed a new implant and left a drain.  Oh, Jackson-Pratt, how I dislike you!  Three surgeries now in 6 months - there are no nerves left to feel pain near the incisions.  But the drain is kinda like being poked with a sharp knife, every time I move.  When it quits draining fluid, it can come out - probably in a week or so.  This was the best scenario of the choices we had to choose from.  I was going to be one unhappy patient if I had an implant on one side and a bra prosthesis on the other!  And my tolerance for intervention is lowering by the procedure, so I am not sure if I would have re-stretched and attempted reconstruction 6 months from now.  We braved the foot of snow and -10 temps to come home late on Monday night.

The Wonderful part of Wednesday?  I feel good enough to go to class.  Far from great, but I can sit through orientation and a lecture.  There is still forward motion in my life.  Cancer and its treatment has consumed me mentally and physically for far too long.  I am ready to focus on something outside of myself.

Bring it on, Grad School!



 

Snowed In Sunday Edition

So... implants went in last Monday, Surgery was pretty smooth, and we were alome about 2 pm. Tuesday was uneventful. Wednesday was a wonderful shower~ 20 minutes of heaven. By Thursday I was off of pain meds & feeling pretty dang decent. But my incision was a little red & draining. By Friday, there was no denying. It was ugly. So off to the doc we went, and he was quick to send me from the posh West County office to the Big Hospital downtown, also known as "work" to be admitted. And here I still am, in the middle of a bitter winter storm. Dr. Brandt's surgery day here is Monday, so we are here if he thinks the implant needs to be removed in the morning. His debate Friday was just where the infection really is. If it's in the tissue, it should respond to IV antibiotics. If it's in the space where the implant is, it won't get better with antibiotics and it will have to be removed. Which means another surgery to put an expander implant back in. And re-stretching radiated skin, whick does not work well. And yet another surgery to put an implant back in. And at 7 pm on Sunday night, I still don't have a good idea how tomorrow will go. It looks better than Friday, but that skin is discolored from the radiation anyway, It is hard for me to tell. My white count was not elevated on Friday, so no real signs of overwhelming infection. I have not had a fever at all. The antibiotic dose in my blood today was low, so doses of 2 were increased. I am npo forsurgery tomorrow, but really hoping to escape that and go home with several weeks of abx - maybe IV, maybe po. Ten inches of snow fell today, and temps in the negative in the world outside. School is canceled- my bet is until Wednesday. Cause we haven't been home for 2 weeks already! The boys are so x-box overloaded by now. My 23 hour surgery observation floor has been turned into a staff hotel. My day nurse slept down the hall last night, and I think she is staying tonight too. In my 15 years, I have never had to stay here. I hope management is taking care of them with food vouchers and combat pay. There is an Applebee's and hotel attached to the complex. Applebee's closed today. Aww, comeon, we are a captive crowd, The boys and my mom are snuggled in at home. A crazy friend ventured out to take them pizza. Friends and family delivered milk, eggs and bread before the weather turned. There is 30 or so crock pot meals she can cook as long as we have power. And the parents are not home to kick them outside or turn off the electronics, so enjoy the party, Kids! Tom has been with me since Saturday afternoon. But this is a really lousy romantic get-away, I must say, But he does take good care of me, and keeps me from going stir-crazy. And that is the snowed in Sunday edition. I am so glad the techno-hubs figured out nook blogging, but will be glad to get home to our real computer! Forgive the typos as I might be nook keyboard challenged.

Thankful Thursday - last of 2013

Thankful for the many blessings in this cancer journey.

Thankful for a husband who takes the time to help with my arm.  As long as I get up with him in the mornings, he makes time to help me wrap morning and night.

Thankful for a Christ child born, a tree full of gifts, a family to spend the holidays with, a table full of food.

Not thankful that the tree is put away already.  And the pile of stuff I keep adding to of things that didn't quite make it back into the Christmas boxes in the garage.  Dang it!

Thankful for what will be about 36 frozen crock-pot meals.  The picture doesn't show the 20 or so pounds of chicken parts.  Thank you, God, for below freezing temps a few days ago so I could just leave that on the back porch!  The site I am using for this round is www.whoneedsacape.com.
I used another site during radiation, but most of those recipes turned out pretty bland.  I had to buy a whole lot of spices for these recipes, so it should be interesting dinner at my house for the next two months.  I still have about 6 or so recipes to assemble, right after I buy some more garlic and find some more time!

Thankful for one more round of Mealtrain.com, too.  While I am trying to be prepared, let's get real, it's much nicer when someone else cooks!

Thankful to be winding down this year.  While I have chosen to be thankful through the crumminess, it has not been the year I wanted.  The boys both noticed that while there were gifts from Mom and Dad and Santa too, there wasn't as much as in years past, for more reasons than just money.  We have tried to give them experiences along the way this year, but those are sometimes forgotten in the wrapping paper frenzy.  Tamoxifen mood swings didn't help any of us in the last week, either.  A year ago, we had thoughts and dreams to be in a new house by now.  Maybe, hopefully, prayerfully, next summer.  Anyone want to buy a great little 3 bedroom house with a huge garage?  I didn't have a thought in the world of changing jobs a year ago, but am starting grad school in a few weeks (Masters in Healthcare Informatics through SIUE and BJC) with the vague plan to work my way out of patient care at some point.  I have no idea what my arm will look or feel like after surgery next week, but I am sure that I need to plan for the future and not be schlepping patients to CT scan (or coding them on Christmas) when I am 65.

Thankful that God forgives when I am angry, and selfish, and frustrated, and angry, and want my life all fixed and better NOW.  Did I mention the mood swings?  Yeah, I am not winning "Mom of the Year" this year.  And it's all about me.  And why do my kids have to learn the hard lessons so young?  Yeah, angry amidst the blessings.  But this week we've had some good talks about chore money, hard work, spending wisely all year long and saving for stuff you really want, as we have tried to put a positive spin on Christmas.  Dang it, Clark Howard, and Dave Ramsey, and Suze Orman, it was much easier when Santa just mindlessly swiped plastic!  So a learning opportunity for the big kid, a blessing amidst the crumminess.

Thankful for one more year surrounded by a great community, two churches, friends, coworkers, family, all holding my little family together, every single day.





Maybe I should clarify some of this.  Sometimes, I just need to vent.  I am not looking for anything from anyone to fix my kid's world.  He asked for a 3ds xl and a specific game for Christmas.  We gave him a DS several years ago, and the boys managed to lose most of the little tiny game cartridges after a while.  I think he traded it in maybe last year for who knows what at Gamestop.  When he asked for the new version (and basically that's all he asked for) this year, I could not bring myself to spend $250 on that.  So the aunts and uncles and Santa and the parents all teamed up for giftcards for him.  He is still a little short.  Last year, Santa would have just swiped plastic and been done.  The more we do that, the less we have for a nest egg to build.  What I didn't realize is how much he has picked up on the balance between bills, no paycheck for no work, and trying to be frugal and realistic for the next two months.  He has been upset the last couple days about asking us to help him pay for the only thing he really wanted, and worried that if we helped him, that was taking money away from the weekly bills.  He will be fine with life's decisions, and was talking on his own about waiting for his birthday in the spring to get it.  There is money tucked away for life, and it's not the end of the world if we don't get to build this summer either while we try and rebuild my body and income and our dreams.  It's just been a hard couple days of parenting, and disappointment for him caused by me and my own stubbornness, and sometimes Christmas isn't Hallmark.  Stupid cancer.  I want to give him the world carefree, not lessons in budgeting, planning and saving.  But when he spends his chore money on silly xbox stuff throughout the year, I don't have as much sympathy.  Sometimes I don't know the right parenting answers, and sometimes there just isn't a right answer.

 

Fantastic Friday

My facebook post for Monday was about 3 days of work, 7 medical appointments and a full moon Monday morning.  Now, we are past 3 pm Friday, and maybe on the downhill slide into the calm before the storm.

It was a good 3 days of work.  I was even willing to pick up another 4 hours this weekend.  Maybe I am feeling guilty for not working at all over the holidays.

Seven appointments, yikes!  Nine, if I include Tom's stuff.  Pre-surgery check-in, PT/ Lymphedema, eye exam, labs, rad onc, med onc and plastic surgeon all this week.  We had a date night after we both had Tuesday afternoon doctor appointments.  Life is a tragic comedy sometimes, and I'll take a quiet dinner out any way I can get it!  From the cancer folks, all is mostly well.  Vitamin D takes a hit with treatment, and mine is low.  Supplement even more than I am.  Easy enough.  I need B complex vitamins, too.  Thyroid is ok, we decided.  There was some question of it being a casualty of radiation, but tsh and t4 levels are back where they belong.  We will do a bone density scan next time. 

Plastics was easy - ready for surgery at the end of the month.  Tissue expanders (the temporary forms that we used to stretch and regrow skin) will come out, and saline implants will go in.  It's another 6 weeks of downtime.  My post-op instructions will amount to moving as little as possible, and arms less than 45 degrees from chest.  I'm getting geared up for it.  There is a mental list of crock pot recipes I want to get made and frozen before Christmas.  Five or so boxes of cereal, 4 boxes of pancake mix, tp and paper towels have been collected in the basement, and a list of stuff still to get on the fridge.

Lymphedema... it's still not much fun.  I am usually wrapped fingertips to armpit with 60 or so feet of bandages.  If I am a really compliant patient, I have a huge foam form and then all the bandaging.  And I should be doing stretching twice a day and massage once a day.  I usually have to rewrap my arm at least once in the middle of the day.  And if you have seen it in person, you can tell it's pretty motion-restrictive.  It's hard to touch fingertips to thumb to grasp anything for very long.  It's hard to bend my elbow.  Can't exactly wash dishes or prepare food, either.  An average day it seems is about 3 hours worth of arm care.  Who has time for that!?  Tom has become quite the arm wrapper, and I am oh so glad.  I do ok in the mornings, but at night, I am way past tired and grumpy.  I still fight fatigue easily.

It was 70 degrees outside today.  That meant a walk in between the 4 med appts.  I forgot how much I need to exercise.  I was in a foul mood after the onc made a stupid comment.  A walk and some music will soothe many things in my life and my head.  And now, it's about 40 degrees and storming.  Crazy weather!

Thankul Thursday

Hey, I'm still here.  I kept up with the daily thankfuls fairly well on facebook, but blogging takes a bit more time, so got neglected.

How bout I start fresh?

Thankful for two boys watching The Sound of Music with me.  I thought they would hate it, but Evan was mad when he realized it's on til 10, past his bedtime.

Thankful for a Santa and an elf, for a Christmas stocking holder.  A friend makes wooden crafts, and I finally got her to make me a stocking holder that stands on its own, and I can't wait to see it.  I've only bugged her for two years!  It's impossible to hang stuff on our plaster-concrete walls.  And somehow, it's already paid for.  Thank you, Santa.

Thankful for the beauty of the first snowfall.  School isn't cancelled yet, but I am betting it will be.  It's beautiful outside, peeking from the warmth of the front door with the neighbor's Christmas lights twinkling.

Thankful for a week with my mom, even though she left a bit early with the ugly weather forecast.  She joined Tom's family for Thanksgiving, we all traveled to my dad and stepmom's for a couple days, and stayed for 3 6th grade basketball games and a long morning of doctor's appointments today at the Barn.  I miss her dishwashing already.  It is kinda weird though, to tell her how to fold laundry and which dishes were not machine-wash.  Pretty sure I should just be thankful she's doing my laundry and dishes!

Thankful for a new garage door opener.  We put off that purchase for several years, but caved in for a Christmas present for me.  The arm is gimpy, and it's hard to stretch to pull the door closed.

God blesses us, every single day, and we are so lucky.