Thursday, May 28, 2015

Gratitude and Joy

Thankful thoughts for today:
Fast insurance turn around
Miracle timing
Ice cream

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Wednesday, May 27, 2015

I Think I'd Like to Become a Hermit

I started this post at the beginning of this journey, but it is still very true today.  I want to cover my head with my blanket and never venture out of my house.  I think if I can just avoid the world, I will avoid stress and never have to deal with reality.

When school was still in session, it was easier to get out of bed.  I had a job to do and could remain focused on being the learning coach and helping my kiddos finish out the year strong.  I had a valid excuse to tell people "no" or that I was too busy or just not answer my phone.  Well, school is over and surgery is not happening yet, so I suddenly have time.

Time for what?   I haven't figure that out.  I don't want it to be time for arranging home modifications, insurance adjusters, etc.  Part of me wants to have time to go places and enjoy being outside of my house while I still can.  I've always been more of an introvert and preferred reading and staying home to being out there partying and interacting with others.  But, I also like having the choice to do that, not having it forced upon me.  And, I see the day coming when I do not have that choice.  Aren't I supposed to want to be out there enjoying the fresh air and the company of others?  Well, guess what?  I don't really want to.  I'd rather be curled up with a book or hiding under my covers.  I don't want to be a responsible adult and take care of adult responsibilities.  I don't want to plan ahead and try to make sure everything is taken care of in the foreseeable future.  I don't want to.

But, I do it anyway.  Why?  Because I'd like to at least pretend that I'm a responsible adult.  I'd like to keep things as normal as possible around here as long as I can.  But, part of me would like to just crawl in bed and pull the covers over my head and let someone else be the responsible adult for awhile.

Thankful thoughts for today:
Insurance adjusters
Getting bids on home maintenance modifications

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Tuesday, May 26, 2015

Extreme Makeover Home Edition

I have finally figured out how to reduce stress in my life. All I need is Extreme Makeover: Home Edition.   One major source of stress right now involves home modifications that need to happen.  There are places that are doable independently, but will need modification before I need assistance.  The clock is ticking and I can see my independence slipping away one tick at a time.

Today has been a rather frustrating day in the home modification race.  My case managers have been working hard to help get things done as quickly as possible.  I have felt like things were at a standstill for about a week but I had a meeting scheduled for today that I thought would get things on track and moving forward hopefully quickly.  There have been a lot of people setting up pieces to make this happen.  I expected more dominoes to be added to it today to keep things moving forward.  But after today, I feel like the domino trail has stopped and some have even been taken away.  It will take a miracle to make everything happen on time.  Good thing I know the author of miracles.  :)

I find myself thinking I just need Extreme Makeover Home Edition to waltz in and save the day.  I need to hear Ty Pennington and his megaphone.  But, I need it to happen very quickly.  Hey, if you're going to dream, you might as well dream big, right?  Too bad that show is no longer being filmed.

Although the dream of Extreme Makeover: Home Edition is fun for a minute, I think I'll have to come back to reality and work super hard to make sure all the dominoes are in line to make this happen successfully before surgery.  Good thing I'm not setting up these dominoes alone.  I have some great help and with their hard work, my hard work, and a miracle thrown in this will happen.

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The Countdown Has Begun

The countdown has begun and I'm in frantic mode trying to think of everything I need to get done before I don't know how long it will be until I can get things done again.  I'm trying to prep myself for time of just hanging out on the couch or in bed reading, watching movies, sleeping.  :)  There are days that does sound heavenly, but I don't know how many days in a row of that I can manage before I start to go a little crazy.

My pre-op and post-op instructions have arrived and I tell you "I will follow the doctor's instructions."  I want to be healed and back to doing as much on my own as I can as soon as possible.  That means I will be following the doctors instructions to the letter.  I will be surrounding myself with those who will help me follow doctor's orders and not enable bad behavior and let me do whatever my own mind thinks is OK for me to do.  I am having major surgery and want to expedite healing as quickly as I possibly can.

Knowing the doctor's orders was instrumental in making my final surgery decision.  I was facing major surgery regardless of my choice and tons of restrictions.  Regardless of my choice, my arm use and shoulder strength will be effected.  Transferring on my own will be impossible for a period of time.   If I had chosen immediate reconstruction, that time period would be at least 3-4 times longer than mastectomy alone.  I can't do that.  I'm already not sure how I can manage whatever time I will be recovering without going crazy.  I couldn't justify increasing that time right now.  Especially not when I don't know what I'll be facing as far as chemo and/or radiation time.  I need my strength and as a manual wheelchair user, I need my arms.

Managing breast cancer from a wheelchair provides complications of its own.  I've heard people compare using a wheelchair to bed rest since you're not really using your body like you do when you're walking on two legs.  That is true, but you are using your body in different ways.  I don't really want to start ranting here, just saying that if I am put on bed rest, it does not mean I can just go about daily life since I'll be in a wheelchair anyway.  Bed rest means BED REST and it comes with restrictions for all even those who happen to use a wheelchair.

I don't know if bed rest will be in my future, but I will be following doctor's orders and not doing anything that will reinjure myself, break open stitches, or land me in the hospital. (I hope!)  My plan is to heal as quickly as possible.  That's where I need your help.  I need prayers going up now and throughout this process for my health and healing, doctors, and a strengthened immune system.

I received my list of what herbal suppliments to stop taking at least 14 days before surgery and have already stopped taking the one thing that was part of my daily routine.  I will not be adding anything new at this point.  I am also to stop taking aspirin or blood thinners at least 7 days before surgery.  I will do that, but maybe not until right at the 7 day mark.  :)

I will be following ALL doctor's orders, but doctor's don't tell you everything about the best way to prep for all post surgery needs.  I have been collecting soft button front shirts, I will order a drain belt to help manage my drains, and I've been collecting books, movie ideas, other things to keep my brain busy during recovery.  I've started thinking about meals, but don't really know how to prepare.  Good thing I have great help arranged that will manage some of these details.

One important thing I'm trying to do is boost my immune system now and keep it boosted after surgery.  My research shows there are four main things to consider when boosting immune systems:
nutrition, exercise, sleep, and reducing stress.  I will be exercising at least as much as I was before diagnosis and will be focusing on strengthening my legs so my arms are not needed as much during transfers.  I will be working on getting more sleep and even taking naps.  :)  And, I am gathering information on make good immune system boosting nutritional decisions.  The good news is what I'm reading shows that I'm already making a lot of healthy nutritional decisions.  If you have any immue system boosting ideas, send them my way.  Now, about reducing stress.  How exactly am I supposed to do that?

Regardless of all my prep work, my immune system will be compromised and working harder than ever to keep me well.  I love you all, but my visitors will be severely limited for awhile after surgery.  In fact, I have decided immediate family members and caretakers only for awhile. Communicating with me virtually may be the best decision for everyone.

I feel like I'm on a fast moving train with no idea what's around the bend or where this train will stop.  I'm just thankful my computer can come with me on this journey and keep me connected to you.

Thankful thoughts for today:
Working Healthy
Casemanagers working hard to help with stress reduction
Rain barrels working
Dry basement
Seasonal fruit

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Monday, May 25, 2015

There Is Always Something To Be Thankful For

Thankful thoughts for today:
Memorial Day
Clean Classroom

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Saturday, May 23, 2015

Movie Recommendations?

I need help from all of you out there.  I need some great movie recommendations rated PG-13 or less or great TV watching ideas.  :)  At first, I thought I only wanted to watch stupid comedy, but I've broadened my horizons just a bit.

There are moments I'm having a horrible day.  I can't escape the thoughts in my head and I just want to curl up in a ball and cry.  For those moments, I need a drama that I can cry with and not make everyone around me worry that I'm crying over nothing.  Other moments, I still want to just laugh at a stupid comedy and forget reality for a few minutes.

So, I'm counting on all of you out there to give me some great recommendations.  I find myself needing the mental escape of movies/TV right now and I will have even more time to fill with these while I'm recovering from surgery.

Can't wait to hear what you suggest.

Thankful thought for the day:
Garage Sales
Free Fall

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Thursday, May 21, 2015

In Everything Give Thanks

"'I have just four words to leave with you.  Four words that have spoken volumes of truth into my life.'
He wanted the words to stay in the room, to remain long after he had gone.  Though no one wished to hear Paul's radical injunction, it had to be told.
'In everything, give thanks.'
That was the lifeboat in any crisis.  Over and over again, he had learned this, and over and over again, he had to be reminded.
'In everything, Father?'
'In everything.'"
                                                      from Somewhere Safe with Somebody Good by Jan Karon

Thankful thoughts for today:
Sonic mini snacks and happy hour
Silver Sneakers

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Wednesday, May 20, 2015

One Step at a Time

When I started this process I was taking everything one step at a time.  I was doing a pretty good job of not getting ahead of myself and worrying about what I did not yet know.  My dad even reminded me at that time that we take the results of the tests and then find out the next step and keep moving forward.

Somehow that "one step at a time" philosophy flew out the window once I got my biopsy results back.  Suddenly I wanted to know exactly what all I would be facing and the timeline for everything.  The people in my life also want this information and I was getting a little frustrated having to say "I don't know."  I'd like to have a little control over this whole thing and I'd like to see the map and hopefully be able to see the end in sight.

I think this is part of why making the decision about reconstruction or not became such an obstacle for me.  The initial surgery decision was complicated enough without adding the complication of reconstruction.  I sought tons of advice but perhaps the best advice I received (from more than one source) was to make one decision at a time.   So, I have made one decision--I will be having a bilateral mastectomy.  Surgery has been scheduled and surgery preparations are in place.  After surgery, the next step will begin.  What will that next step be?  I don't know.  And, right now, today I'm OK with not knowing.

If I have learned one thing through this experience, it is that I am not in control.  As much as I would like to see the whole picture, I know it is not the best thing for me.  If I could see all that lies in my future, I think I might hide under my covers with a pint of Chunky Monkey ice cream and never come out.   I will just trust the One who is in control and take this one step at a time.  When I lived in Ohio, I hated not being able to see for miles across the flat land when I was driving.  I hated not being able to see what was ahead.  But, I discovered the benefit of not being able to see around the corner was the amazement that comes with being surprised by the beauty around the next bend.  If I could see everything coming, I'm not sure I would truly appreciate its beauty.

I read in a devotion once that our relationship with God is like driving a two-seater bicycle.  We can pedal from the front seat and try to control the steering and the destination or we can pedal from the rear seat and allow God to steer and control the destination.  I pray that I can be content to pedal from the back and not try to take control of the steering.  I want to be surprised and amazed by what is around the next corner.

Thankful thoughts for today:
Surprise mail
The Voice
Laughing Cow Cheese

Tuesday, May 19, 2015


I just received my pre-surgery instructions and post-surgical recovery information in the mail today.  Enclosed was an advertising card from a Woman's Imaging Center.  That little card provided hope to this house and maybe hope to some of you.

"Mammography is our best method of detecting breast cancer early.  A screening mammogram can find a tumor long before it can be felt--when there are no symptoms.  When breast cancer is found at the earlier stage, treatment is more effective and the survival rate can reach as much as 95 percent."

That one quote lowered the fear factor around here,  In fact, my daughter said, I have at least 5% chance of some random accident.  At least you know what is causing your 5%.  :)

Thankful thoughts for today:
Customer service available immediately via email
Schedules working out
Grocery store close

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Monday, May 18, 2015

Be Thankful for the Hard Times

 I have a confession to make . . .I don't want to be thankful today.  I didn't want to write a blog post because I'm in a whiny mood and just want to pull the covers over my head and block out the world.  Maybe after I eat a pint of Ben and Jerry's Chunky Monkey ice cream.  :)  But, I know how important it is to be grateful.  And, I've been reminded of that today as I read words from two women who inspire me.  As I read about their cancer experience, they both mentioned the importance of gratitude.

I was reminded yet once again that I need to maintain an attitude of gratitude.  Even when it looks like there is nothing to be thankful for, there is.  So, even when I don't feel like blogging and feel whiny, I will at least be posting my thankful list for the day.

Thankful thoughts for today:
Ben and Jerry's Chunky Monkey Ice Cream
Last week of school
New earrings

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"Be cheerful no matter what; pray all the time; thank God no matter what happens. This is the way God wants you who belong to Christ Jesus to live."
                                                         I Thessalonians 5:16-18 (MESSAGE)

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus"
                                                           Philippians 4:6-8 (NIV)

Sunday, May 17, 2015

How Am I?

How am I?
I don't know how to answer that question when I am asked.
How am I?
Physically, I feel fine.  I told my Sunday School class today that I feel good.  And, I hope I continue to feel good until surgery.  But, from that day on, for a while, I will feel really not good.
So, how do I answer that question?
How am I?
I still have cancer.
I am still functioning.
I feel relieved to have a plan in place.
Today I physically feel good, but I know the day is coming when I will not.
How am I?
Alive and fighting this aggressively

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Surgery Date in Place

How does life change for me now that I have surgery date in place?  I never really thought there would be any moments of relaxation until treatment was over, but I find myself being able to relax knowing there is a surgery date in place and nothing more I have to do or decide until it gets here.
So, maybe I will have a few weeks of peace to enjoy life around here before life changes dramatically again.

Positives about not having surgery until late June

  • Being able to help kids finish school year successfully
  • Attendance at all end of school events
  • Attending special beginning of summer events
  • Celebrating birthdays and Father's Day
  • Some summer gardening
  • Time to breathe
  • Time to plan ahead
  • Time to d/c medication and supplements before surgery
  • Time for Spring TV Season Finales
  • Attending support group before surgery
  • Warm weather 
  • Seeing Inside Out in theaters  
There's a lot to look forward to while I wait yet once again.  Only, this time, waiting doesn't seem so terrible.

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"God will Use This Mess for Good"

"You'll get through this.
It won't be painless.
It won't be quick.
But God will use this mess for good.
Don't be foolish or naive.
But don't despair either.
With God's help, you'll get through this."
                               by Max Lucado

Thankful thoughts for today:
Rain that waited until end of track meet
Safe travels
Once Upon a Time

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Thursday, May 14, 2015

Pink is a Color, Not a Political Statement

I absolutely love the color pink and always have.  When I got to pick out carpet for my childhood bedroom, it was pink.  It absolutely broke my heart when my daughter went through a "no pink" phase. So, I was certainly prepared when I got the breast cancer diagnosis to wear a lot of pink.  In fact, my new watch happens to be pink.  :)

But, I  have noticed since my diagnosis that pink has taken on a new meaning.  People assume I wear pink for breast cancer awareness.  My own husband even asked me if I bought a pink watch in preparation for a possible diagnosis.  (I got it between biopsy and diagnosis).  When I shop for clothes now, I still find myself drawn to pink, but I wonder what message it will send.  The message is I LOVE PINK!!!

I want you to know that every time I wear pink it is not a political statement. I JUST LOVE PINK!!!

Found this on Pinterest and loved it!!!

What Makes Me a Woman?

Here it finally is . . .the big elephant in the room . . .the question everyone diagnosed with breast cancer thinks about and no one wants to talk about.   What makes me a women?  Do my breasts define my femininity or sexuality?  Will I feel different as well as look different without them?   Will others look at me differently?  Is talking so openly and honestly about this inviting stares in the future?  Will the stares come anyway?

I think one reason I can talk about something that may invite stares is that people stare at me anyway.  I live life in a wheelchair and that in itself is a magnet for stares and comments.  I think I'm mostly immune to them.  And, although I don't really want people staring at my chest, I'm not sure I can really decipher why they are staring.  That is, until they open their mouths to let their ignorance shine through and make it pretty verbally clear why they are staring.  I'll just have to expand my arsenal of clever come backs to include some breast cancer related.  I'm just going to have to get a bit quicker thinking of a come back.  For example, while shopping the other day I was looking at hats/scarves, etc. if needed in the future.  Another customer was also in that section and told the friend he was with "You only wear a Fedora if you're stupid."  It took me too long to figure out my comeback. I wanted to say, "Or if you have cancer."  But, I didn't think of it in time and he wasn't talking to me anyway.  So, it's probably a good thing I thought of it too late.  I've learned that unless I'm directly addressed, ignoring ignorant comments is the best choice.

So, what makes me a woman? Do my breasts make me a woman?  I know the answer to that is "No."  I know that with or without breasts, I am still a woman.  I am still myself.  I am still the same person.  I should know that changes to your physical body don't change who you are inside, but that doesn't mean I'm automatically comfortable with the changes coming.  Although I did say the other day, "I already have a ton of scars, what's a few more???"  I don't have the answer to that question.  I don't know why this bothers me.  Reconstruction or no reconstruction my body will be forever changed.  What I don't want is what I learned about on the Tonight Show, "The Dad Bod."  :)  I am not a dad and I am not comfortable looking like one.  I also have no desire to look like E.T.  (If you don't know what a Dad Bod is, Goggle it)

Why is it that that the loss of breasts is the only thing creating angst? There is a possible hysterectomy in my future based on the results of my genetic testing and not for one minute do I think that makes me less of a women.  I find that ironic.  The very thing the doctor looked for to determine the gender of my baby girl via sonogram, ovaries, may be removed from my body.  The very thing that told us she was a girl is something that may be removed from me.  But, not for one second have I thought that makes me less of a woman.  So, why would I think the removal of breasts would?

I think maybe it's because no one is looking inside my body to see if I have ovaries.  No stranger can make judgments based on my internal organs.  But, somehow I think strangers or even some non-strangers might make judgments about my breast removal.  Body shape is visible to everyone who can see you and many people make judgments based on body shape.  I know I shouldn't let that impact my decision making process, but it does.  I know the people who really matter are going to love me no matter what.  And, maybe that is what I need to focus on and make decisions based on my overall health, well-being, and what is best for me and my family long term.

So, if I look like ET or have a Dad Bod, don't comment.  Keep all your crass comments to yourself please.  

Thankful thoughts for today:
New wheelchair
Box of Wonder Woman goodies from my sister
Schedule that is still balancing

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Wednesday, May 13, 2015

Victory in the Valley

Today I'm continuing my search for whatever answers and support are out there.  Today I decided to check out Victory in the Valley, a nonprofit organization in our area for resources and support of cancer patients/survivors.  It's always nice to find a community of others with similar experiences.  The bad news was they didn't personally know of any wheelchair users who also happen to be breast cancer patients or survivors.  It looks like I might be a trail blazer once again.  Good thing I know how to do that  :)

I was so impressed with the services provided and plan to use those that I need.  They offer practical services like a boutique to help you figure out wig or turban fitting if that becomes necessary in my future as well as post mastectomy supplies.  They also offer supportive mentoring relationships between the newly diagnosed and a survivor who has walked through this valley before as well as support groups.  There is even a yearly women's retreat.  I'm not sure I'll be feeling well enough for a retreat in August, but we'll see.  I have a hard time fully understanding why when I feel fine right now I'm about to make decisions that will leave me feeling terrible for an indeterminate amount of time.   Logically I get it, but emotionally I'm not sure it makes much sense.

I was feeling loved and supported within minutes.  Check out the awesome goody bag in the pic above.  I got an amazing booklet called, "Navigating the Cancer Journey" that helps answer many of the questions swirling around in my head.  I also asked my specific question regarding surgical options and actually got opinions as well as a more detailed description of the impact on my arm usage and left armed with questions for my doctors.  So, I came home and called immediately and talked to the nurses.  I finally felt like I was armed with solid information and could have an informed discussion.  :)

I left with a bag full of goodies, a head full of newly learned information, cards and pamphlets about all the services offered (including facials, chair massage, art therapy, etc.)  I have found a place to ask my multitude of questions and get answers based on experience.

I even left with information about medical tattooing.  Who needs reconstruction when you can camouflage your scars with cool tattoos or even enhance your reconstruction?  Maybe I've found the reason to add a tattoo to this body?   What do you think?  :)

For those of you who know me well you know the most practical gift today was the organizer to help keep all necessary medical/scheduling information in one place.  The gift I was most drawn to was the blue afghan (see it draped on the back of the chair).  Everyone needs a blue blankie to help them through life.  Just ask Linus.

And yes, the name is based on Psalm 23;4  "Yes, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me."

Thanksgiving for today:
Victory in the Valley
Feeling empowered
Helping my son finish four language arts lessons
Blue blankie

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Tuesday, May 12, 2015

Collecting Stories

I am collecting stories from breast cancer survivors to help me make treatment decisions.  Right now I'm focusing on surgery decisions.  Lumpectomy vs. Mastectomy?  Reconstruction vs. External Prostheses vs. Living Flat?

It's funny how when things become a reality in your life, it changes your views.  My whole life, I've always said, "If they find cancer, mastectomy for sure."  I never expected to have one second of wavering about that decision.  But, I did.  I think I have decided bilateral mastectomy for sure regardless of genetic testing results.  Now, on to the next decision.  Reconstruction or not?

This is why I want to hear from women who have been there and made these decisions.  I want to learn from the wisdom that comes with experience.  My doctors can only give me statistics and the what might happen.  Have you ever read the potential side effects on medication?  It's kind of the same thing, what might happen.  But, I want to hear stories of what did happen.  I want to know the choices you made, the recovery process stories, and whether you have any regrets or are happy with the decisions you made?  I want to hear the horror stories and the success stories.  I want to hear the REAL stories.  I want to hear the reality of how long before you could use your arms.  How long before independent functioning came back?  How long before you could dress yourself fully?
If you didn't choose reconstruction, what struggles if any did you have with your new body?

If you're not comfortable sharing your story as a blog post comment, please comment anyway.  Just tell me in your post that you don't want it made public.  I monitor all comments and won't publish any you ask me to keep private.  It can just be between us.  But, please share.  I am making a life changing decision and need the wisdom of experience to help guide me.  If you happen to be a breast cancer survivor and use a wheelchair, I'd really love to hear from you.  I can't wait to start collecting stories.

Thankful thoughts for today?
Local Cancer Center
Friends stopping by on their way through town

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Saturday, May 9, 2015

What Changes Are Coming?

I'm asking for some input and advice.  I'm especially needing input and advice from those who have been there.  Let's get really specific, if you or anyone you know has made breast cancer decisions and also happens to use a wheelchair, I'd love to hear from you.

Here's where I am in this whole process.  I am awaiting genetic testing.  When those results come in, final decisions will be made about surgery.  If the results are positive, they are recommending a bilateral mastectomy and removal of ovaries.  If the results are negative, I have more options:  lumpectomy with radiation, one-sided mastectomy, bilateral mastectomy.  I have decided I will be having a mastectomy regardless of test results, maybe even bilateral.  Removing the lump will still leave cancer in the milk ducts, and although we hope the radiation kills it all, that is really all it is, HOPE.  I don't want to spend any more time than necessary hoping my invader is really dead and not just hiding out waiting for later.

Then, I have to decide whether to have reconstruction or not?  And if not, to wear a prosthesis or just live flat?  The big decision about reconstruction or not is it's impact on my independence and the use of my arms.  As wheelchair users know, your arms are important.  They basically do the work of arms and legs for me.  I also know, it is definitely possible to live a full life without 100% use of your arms.  I happen to personally know amazing women who use a wheelchair, have limited arm use, and have full, successful lives.   I began what I call my "new normal" almost eleven years ago when I began life in a wheelchair.  I'd like to think I have successfully figured out how to do that.  Well, my husband told me, I am just getting started figuring out my "New, new normal."  And, I know whatever that means, I can do this.  But, I don't want to.  :(

I've been told that reconstruction will mean a long recovery period.  And, it will mean weaker arms and shoulders, possibly for a few weeks or months, possibly forever.  Do I want to risk that?  Is reconstruction really worth the risk?  

So, I'm asking for help making these decisions.  I know the final decision is mine, but I'd love to be able to weigh as much advice as possible.  I'd also love some advice on what's coming and what I should do to prepare for this change in my life.

I've started arranging for increased help following surgery.  I know I will be much more dependent on others, especially if I can't use my arms.  I've started the process for some additional accessibility modifications to my home that will be needed as I lose independence.  I've started trying to plan ahead for meals, things to keep me busy while still following doctors orders after surgery, clothes I can get on after surgery.  What kinds of clothes should I plan to wear?  

Right now, I'm trying to focus on preparation for surgery.   But, chemotherapy and radiation are still possibilities and hormone therapy is definitely going to be part of my life.  So, for those who have experienced these, what should I be thinking about?  What plans should I be making?

I'm counting on all of you to help me through this.

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Cancer Will Define My Life Forever

I never thought I would define myself by my disease/disability, but at this point I’m feeling like cancer will forever define my life.  I do not define myself by my wheelchair use or traumatic brain injury or other disabilities.  I am a wife, mother, piano teacher, Christian, friend, daughter, writer, etc. who happens to use a wheelchair and have a traumatic brain injury.  Now, I get to add, who happens to have cancer.  At this moment, I am a cancer patient.  Someday I will be a cancer survivor.  But, my life will forever be defined by cancer. 

I was struck by that as I attended my eye appointment this week.  I had to mark “cancer” on my health sheet and my daughter had to mark it on her family history.  I’ve done this at my other appointments this week, but those were appointments related to my cancer.  This was my eye doctor and I realized at that moment that I will always be defined as a cancer patient and my children now have to acknowledge my cancer every time they fill out health forms. 

I was hoping getting a plan of action in place would help my frame of mind.  I was wrong.  I want nothing more than to forget for at least a few minutes that I have an alien invader inside my body.  That has not happened, nor do I see it happening any time soon.   I’ve been asked several times over the past few days how I feel.  How do I feel?  How should I feel?  I don’t feel like I have cancer.  Physically, I feel no different today than I did a month ago before all this began.  I have no pain.  I have no fever.  I have no indication that there is an invader living inside my body.  Surprisingly, my blood pressure has even remained at or below normal even during all the doctor appointments I’ve had this week. 

Physically, I guess the answer is, “I feel fine.”  Emotionally is another story all together.  I feel like I have an invader living inside my body and I don’t even really know they’re there.  But, I will never again feel completely free from this invader.  Even when they cut it out and do whatever follow up treatments come, I will constantly be wondering if it is really gone or just doing a great job of hiding out and waiting until it’s bigger to show itself.  The rest of my life will be defined by cancer.
Don’t be afraid to ask questions or talk to me about my cancer.  I may not want to think about it, but I always am.  Nothing you say will remind me that I have cancer.  That thought is constantly in my mind.  And, it is not going away.  I will not “get well soon.”  This is a lifelong battle.  Hopefully, there will come a day I will be declared cancer free, but it will not be soon.  And, it will never mean I can relax and let my guard down.   

So, I guess the moral of the story is I will have rough days emotionally for the rest of my life.  Like it or not, once cancer enters your life, you are forever defined by cancer.  And, in case you didn’t know.  CANCER SUCKS!

Thankful thoughts for today:
Rain free track practice
Talking to someone who's "been there"
Glasses ready in one hour
Wonder Woman socks
Raised garden planted

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Thursday, May 7, 2015

Plan of Attack

I saw my oncologist today so now my treatment team is complete and plan is in place. The first part of the plan is underway--genetic testing.  So, we wait.  I'm already a little tired of waiting, but at least things are supposedly happening, they just take time.  Next step, surgery.  For some, the next step is chemotherapy.  But, my oncologist agreed that with the size and grade of my tumor and the fact that it is HR-1 negative, surgery can be the first step.  So now is the time to decide the extent of the surgery.  After surgery comes the pathology report and then chemotherapy if needed and then radiation if needed.  This is all followed by a minimum of 5 years of hormone therapy.

So, now I know, maybe what is coming.  I'm sure there's no real way to know what's coming until I actually experience it, but at least I have a little idea and know what to research.

Regardless, this is the beginning of the long haul.  Please hang in there with me  I sure don't want to do this alone.

Thankful thoughts for the day.,
Improved glasses prescription
Complete treatment team and plan
Supportive teachers

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Wednesday, May 6, 2015

Wonder Woman

Yesterday turned into a much longer day than I had originally planned.  My carefully balanced, teetering tower lost a few pieces, but hasn't come crashing to the floor yet.  :)  So far, the kids have had to miss some Live Lessons for school and a couple of fun activities, but nothing life changing.  Good thing they record those Live Lessons so they can listen to the recording later to see what they missed.

My first appointment of the day was at the breast care center.  I'm so thankful they were able to squeeze me in bright and early.   I got to meet my doctor, have another look at the mass via ultrasound, see the mammogram for the first time, and spend a lot of time talking about what is to come.  There was so much information, I'm thankful my husband was there taking notes.  We have set up a notebook to hopefully keep all my information together, so I'm not the one messing up appointment times.

We talked about my diagnosis and what all the different letters/numbers mean.  The cancer is grade 1 (which means less aggressive) and estimated at a Stage 1.  We won't know the stage for sure until after surgery, but it is estimated to be a small, non aggressive type.  :)  It looks pretty much the same on ultrasound as the first time I saw it.  It is hard to differentiate to the untrained eye on a mammogram.  All dense tissue and my cancer cell look very similar.  It just has a more defined circular shape whereas the rest of the dense tissue looks more like cirrus clouds.  I'm thankful whoever read my mammogram caught it and decided it needed further testing.  I definitely would not want to wait until even the untrained eye could tell "one of these things is not like the other.  One of these things just doesn't belong."  I'm pretty sure at that point, we would not be looking at Stage 1 cancer.

We also discussed treatment options and what I can expect going forward.  I am currently having genetic testing and waiting not so patiently for the results.  The doctor wanted to explain why it was important for me to have genetic testing even though I already have cancer.  She didn't have to convince me of its importance.  I already knew that it was important to know if I have a genetic marker to help determine the future care of my daughter, as well as my mother and sister.  If I need to be the guinea pig to help preserve the health of those around me, I will gladly do it.  What I didn't know is that the genetic testing results will help determine my current treatment.

Surgery will be happening next regardless of genetic testing results.  If the test results are positive, a bilateral mastectomy will be happening and probably removal of ovaries.  If the test results are negative I will still be getting a mastectomy.I will just have to decide if it will be bilateral or only right side.  And, I will need to decide whether I want reconstruction, an external prosthesis, or nothing.  It will not be until after the pathology reports come back after surgery that I will know about chemotherapy or radiation.  My cancer is hormone receptive, both ER and PR positive, so I will be having hormone therapy for a minimum of 5 years.  This is not hormone replacement therapy, giving me more of the hormones.  This is shutting down hormone production.

So, that is where I'm at with treatment knowledge.  And since a mastectomy with possible reconstruction will take place, the breast care center made an appointment for my to talk to the plastic surgeon about possible reconstruction.  That appointment left me with even more to consider before a decision is made.  It also left me with the doctors working on getting surgery scheduled at some point after the genetic results arrive IN THREE TO FOUR WEEKS!!!  WHAT???

The good news is this gives me time to make an informed decision about exactly the type of surgery and impact on recovery, independence,, etc.  The good news is I will get to help my children finish this school year before the genetic testing results are in.  The good news is I will get to attend all end of the year school activities.  I think that's what all this means.  I do see the oncologist tomorrow so we'll see what he does to my precariously balanced teetering schedule of activities.

Just in case you're wondering how the title of this post fits its content, I have decided I must wear my Wonder Woman shirt to doctor appointments.  Monday, when someone screwed up my appointment and I had to reschedule for Tuesday, my first thought was "it's a good thing I have more than one Wonder Woman shirt.:"  :)  So, I wore red on Monday and purple on Tuesday.  Wearing my Wonder Woman shirt gives me superpowers, right?  Does that mean, if I have to take it off to be examined, my superpowers are gone?  Maybe I need to get something Wonder Woman themed that won't have to be removed during doctor appointments.

Thankful thoughts for the day:
Understanding and supportive teachers
Time to prepare birthday celebration for husband
Storm trackers and breaking into regularly scheduled TV

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Monday, May 4, 2015

Gratitude Changes the Present

I Don't Have Time for This

I don't have time for this.  I've been saying that since my diagnosis, but that really came home today.  When I received my diagnosis last week, the first thought I had was about how full my schedule already is.  I don't have time to add anything new.  Although the waiting period was more stressful than I would like to admit, I was glad I had no extra cancer related appointments until today.  I already had a very full calendar last week that I was not looking forward to adjusting.  And, my son had a very important event over the weekend that I did not want to miss.  I was so thankful I didn't have to choose.

Well, I had readjusted my schedule for this week to add an appointment with the breast care center/surgeon and an appointment with the oncologist.  I tried to work a couple of appointments into my already full schedule of kid's medical appointments, online school schedule, eye appointments, kid's social activities, church, track practice, teaching piano lessons, etc.  I thought I had it all worked out so that everything could happen and my husband could even attend my appointments without taking too much extra time off work.  Then, today arrives.

In case you didn't know, I don't handle change all that well.  So, when I arrived at my appointment at the breast care center only to find out someone somewhere had messed up and my appointment was not really scheduled until tomorrow and later in the afternoon and with a DIFFERENT DOCTOR I was a little upset.  My carefully balanced schedule came crashing down around my shoulders.  I DON'T HAVE TIME FOR THIS!!!  The nurse at the breast cancer center was able to talk to me about my diagnosis, let me have a copy of my report, and work some magic so that my appointment with the doctor is still tomorrow, but at least now it's early enough my husband can attend the appointment with me without missing work.  My crazily balanced schedule is precariously teetering, but still hanging in there.  We'll see what happens to it tomorrow when we get more answers and hopefully schedule surgery.

For those of you out there waiting to hear the next step, there it is.  I will be having surgery.  Exactly what type I'll know more about tomorrow.  Right now, I do know I have been diagnosed with Invasive Ductal Carcinoma, Well Differentiated, Nottingham Grade I/III, Nottingham Histological Score is: (Tuble Formation-2, Nuclear Pleomorphism-2, Mitotic Figures-1)  My results came back that the cancer is also very hormone reactive to both estrogen and progesterone.  So, tomorrow I will learn more about what exactly that means.  I think the next step will be surgery and any additional treatment will not be decided until after the results from surgery are back.  So, I'll keep you updated as I know more.

What did I learn today?  I learned that having some answers does make it much easier to deal with what is.  I have always said that I can deal with whatever as long as I know what I need to do.  I've learned that is true.  I learned that I want to face this aggressively so I can hopefully deal with it once and not have to revisit cancer treatment every few years.  I also learned that in the future I will handle my own scheduling or at least double check before I head to appointments.  :)

Thankful thoughts for today:
Great kyphosis appointment for daughter
Appointment found early
Beginning of answers
Excellent reports about surgeon

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Sunday, May 3, 2015

Giving Thanks in All Things

I realized throughout all this that I've been remiss in doing something I know is important.  I have not been listing my thankful thoughts for each day.  I have been giving thanks, but it's been more in the moment and not intentional.  Most of you know how important maintaining an attitude of gratitude and giving thanks regularly is to me.  For those who don't, check out my previous blogs about it.  (My platform as Ms Wheelchair Kansas 2013 was "Maintaining an Attitude of Gratitude", so the entire blog has posts related to that important theme.)

Giving thanks and looking for the blessings in EVERY situation is so important.  I will be listing thankful thoughts every day.  But, they will only be on one post per day.  Join me in listing what you are thankful for each day.  Remember, when there is thankfulness and peace in your heart, there is no room for anger, worry, fear, and other negative feelings.

"Thank God no matter what happens.   This is how God wants you who belong to Jesus Christ to live."
                                                                             --I Thessalonians 5:18 (MSG)

Thankful thoughts for today:
Safe travels
Great friends
Free Spirits

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