Sunday, September 13, 2015

Using This For Good

A dear friend of mine recently learned that her son has leukemia and they began the fight of their lives. As she shared her thoughts this week, I found they gave words to many of the thoughts that have been rattling around in my brain for the past few months, so I asked permission to share them with all of you.
Please enjoy these amazing words of truth as penned by Amy Reid.

"I've learned through various trials in my life that I can control very little - but there is one thing I DO get to control.  I get to control my response - to trials, to God's leading, and anything else life brings my way.  I can choose to let my feelings and circumstances dictate to me how I will respond, or I can choose to claim His Truth through His Word.  My feelings and circumstances are not a stable foundation on which to build as they can turn on a dime.  On the other hand, God is always on His throne and can NEVER change!   He is ALWAYS kind, compassionate, gracious, merciful and so much more.  He CANNOT NOT be those things!  That is a much better foundation on which to build than feelings and circumstances! Does that mean my feelings are wrong or useless?  Absolutely not!  God has wired me with those feelings.  I am made in the image of Him!  It just means they are not always trustworthy.  

So, from the beginning of this trial, I've chosen TRUTH.  Have I had tears?  YES!  But never once have I wept without hope.  Never once have I had a moment of paralyzing fear.  Is this all because of some great strength I possess?  A resounding - NO!  I am so incredibly weak.  Apart from Christ, I would be a basket case right now.  But I have spent hours saturating my heart and my mind with HIS Truth and am choosing to claim the promises He has given us.  One of those promises that we talk about a lot, especially with Tate, is that "We know that in ALL things God works for the good of those who love Him, who have been called according to His purpose." (Romans 8:28, emphasis mine).  Tate surrendered his life to Jesus over a year ago.  He has a personal relationship with Him, as do all of us in our family.  Tate knows God is good - all the time - and to know what God is like, we just need to look at the life of Jesus, who was God with skin on.  Jesus healed.  He cared.  He cried with others.  Cancer was not a part of God's original plan, but we revolted against His plan and sin entered the world.  So God did not cause this cancer to "teach us a lesson".  But the amazing thing is, God can take something Satan means for evil and bring wonderful things out of it for our good and His glory.  In fact, He promises that in Romans 8:28.  He HAS to bring good out of this.  I don't know what that will look like, but I choose to trust Him.  God HAS to be faithful.  He can't be any other way.  He HAS to fulfill His promises - promises for hope, for peace, and to glorify Himself.  But, unless I know those promises, I'm more apt to buy into what my feelings and circumstances are telling me I should be doing - which in this case would be freak out!  Instead, I choose to trust.  It's not a blind trust.  I can look back in my life and see how God has been in and through every aspect of it, and He's batting 100 in the faithfulness department and in making me more and more like Jesus.  I read a quote once that said something like this:  "God is more concerned about my character than my comfort."  His desire is we all look, act,and be more like Jesus every day.  My prayer and heart's desire through this journey we are on is this:

1) God is glorified.  It is the ONLY thing that will give any value and worth to this horrible thing.  I want people to see how great, how good, how amazing God is - however that needs to be done.

2) I don't want to be the same person on the other side of this journey.  I want to glean every once of worth out of this trial.  I want to be refined.  To be molded.  To look just a little bit more like Jesus"

These words touched my heart and I echo them.  I want God to be glorified through my trials and I want to look a bit more like Jesus each and every day.  I can already see glimpses of the ways God is using this for good.  I just pray I can hang on to that and not find myself engulfed by the tidal wave of CANCER and all that has now entered my life.

Thankful thoughts for today:
Master Chef

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Monday, August 31, 2015

"I'm Gonna to Love You Through It"

I'm so thankful to my husband for loving me through this.

Pain Today . . .Strength Tomorrow

Thankful thoughts for today:
Victory in the Valley
Connecting with other survivors
Piano students

Friday, August 28, 2015

Is Cancer Gone?

I realize I've been absent from here most of this month.  That doesn't mean things have stopped happening, in fact just the opposite.  It means my life is pretty full right now and by the end of the day and time to write on this blog, I'm exhausted and just want to sleep so I can make it through another day.

So, let me take a minute and briefly catch you all up on what is going on in my life.

  • Piano lessons start again (I teach)
  • Insurance finally approved and I got my first shot of Zoladex.
  • Side effects have started arriving (post to follow)
  • PET scan complete--It was clear and did NOT "light up like a Christmas tree"
  • Baseline blood work done--no surprises
  • Bone density test complete--Diagnosis of Osteopenia
  • Anastrozole to begin in September
  • School begins
  • Fall church programs begin
My pet scan was clear, so does that mean cancer is gone?  That means there was nothing big enough to show up on the PET scan that needed to be treated with additional surgery, chemotherapy, or radiation at this time.  That does not mean there aren't rogue cancer cells floating around my circulatory system waiting to grow.  That is why I will be taking Anastrozole.  The hope is we can starve and kill them before they have a chance to grow and/or meet up.  So, is cancer gone?  The Livestrong Manifesto says, " . . .the fight never ends.  Cancer may leave your body, but it never leaves your life."  The answer is "no."  Even if there is no cancer in my body; even if surgery removed it all; cancer will always be a part of my life.  Since there is no real way of knowing if there are rogue cancer cells floating around, treatment will be a part of my life for a minimum of 5 years.

So, what do I need from you now?  I need you to continue to love and support me.  I need you to keep sending positive and/or funny thoughts, emails, Facebook posts, comments here, etc.  I need you to understand if my energy level or side effects prevents me from doing all I could do before.  And, I need advice from time to time.  Right now, I'm struggling with the decision between continuing Zoladex shots for at least the next five years OR having a hysterectomy and discontinuing Zoladex.  Any advice?

Also, any advice for managing Osteopenia?  I will be getting shots on a regular basis to help with bone density.  Any advice on natural ways through diet/exercise to help?

Thankful thoughts for today:
OTC Allergy Meds
Victory in the Valley
End in sight

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Tuesday, August 11, 2015

Acting As If

I'm about to get a PET scan and I'm choosing the "acting as if" scenario.  If I act as if everything will be fine and this is no big deal then that is what will happen right?  I've been telling everyone this is no big deal.  I even sent my husband to work this morning because everything will be fine.  My PET scan will not "light up like a Christmas tree."

I did this when I was called back for further testing after my mammogram.  It was no big deal, I sent my husband to work, etc.  That time, the results were different than expected.

I think "acting as if" is really having faith that all will be well.  Regardless of the results, all will be well.  Jesus promises, "In this world you will have trouble. But take heart! I have overcome the world."  (John 16:33 NIV)  The beginning of this verse says, "I have told you these things, so that in me you may have peace."

So, no matter the results all will be well.  I am about to get facts about the reality of my situation.  I can deal with whatever I need to deal with, I just need to know what that is.  I am not alone.  Whatever comes, with Christ's help and the support of family and friends, I can do this.  :)

UPDATE:  PET Scan done.  I'll receive results in two weeks
                   First hormone blocker shot done.  It was Zoladex.

Thursday, August 6, 2015

The Waiting is Over . . . Or Is It?

The waiting is over.  Well, maybe not completely, but there will be a ton of activity coming up and it feels like the waiting is over and things are finally in motion.  I have at least one cancer related appointment every week this month.

I started this post at the beginning of August thinking the waiting phase was over.  Well, I was WRONG!  I have a plan in place.  I have appointments scheduled for every week this month.  I went to my first one today to learn that the waiting is not over.  You would think your oncologist could make decisions about treatment and once the plan was in place that would be the end of it.  WRONG!!!  I am waiting yet once again, this time because insurance has not yet approved the plan.  They tell me at the office that it's just a matter of paperwork and timing, but my procedure will not be paid for by insurance unless pre-approved.  They have no doubt it will be approved, but it has not been yet.  Why can't the oncologist make a decision based on his years of experience and education and insurance accept that he has made the right decision and pay for it no matter where the paperwork trail got delayed?  This shouldn't surprise me.  I've been jumping through these hoops with my wheelchair related needs (including the chair itself) for years now.  Somehow, I just thought cancer treatment would be a different story.

The waiting is over for one thing--side effects.  Some I understand.  Some are surgery related.  Some I don't quite get.  Then my husband gently reminds me that I already have nerve damage and a traumatic brain injury.  I may have a more difficult time than most determining what is a side effect of cancer treatment and what is a normal part of my disability.  I already have tingling/numbness on the entire right side of my body.  I already get headaches off and on.  But, waking up nauseated is new.  And, I don't understand.  I don't have any new chemicals in my body at this point.  But, at least the waiting for side effects is over.  I just hope a ton of new ones don't appear.

Waiting, Waiting, Waiting.  Waiting drives me crazy.  Just thought I would vent for a minute.

Tuesday, July 28, 2015

Getting My Number

In just a couple of hours my life will change yet once again.  This waiting phase will be over and I should know what's next.  A low number will mean hormone therapy is next.  A high number will mean chemotherapy is next.  A mid-number will mean more waiting is next.  That's what I do not want to happen.  I feel like I've waited enough.  I'm ready for the waiting phase to be over and action to begin.  I think I''m ready for either high or low. I'm ready to face whatever side effects are coming I'm just not prepared for even more waiting.  Stay tuned to this post and I will add the results later today.

And my number is  . . . .  11

What does this mean?  It means no chemotherapy.  We did discuss auxiliary node removal and/or radiation of chest wall.  After discussion of all options and potential side effects, and a phone call to a colleague, it was decided no surgery or radiation at this point.  :)

I will be having hormone therapy, but it will not be tamoxifen which is typically used for pre-menopausal woman.  That drug has a potential side effect of blood clots which is too risky for a wheelchair user with a traumatic brain injury.  So, within a couple of week I will be getting a shot of lupron to stop hormone production and instantly throw me into menopause.  Who ever knows exactly when menopause will begin?  This girl, that's who!  :)  Then four weeks from now I will be beginning my daily dose of anastrozole for at least 5 years.  During this month, I will also be getting a bone density test to establish a baseline before we begin messing with hormones.  I will also be getting a PET scan.  If it is clear, the plan progresses as determined today.  If cancer shows up elsewhere in my body, we renegotiate the treatment plan.  If it shows up in auxiliary nodes, surgery and radiation will be the next step.

I am instantly feeling much better.  Am I instantly feeling better because there will be no chemotherapy at this point?  Maybe.  But, I really think I am feeling better because I have a plan in place.  While surgery and radiation have not been ruled out completely, the waiting for PET scan results is not unbearable because there is a timeline in place.  I feel like the plan has been fully explained and we are all in agreement of the next step.  And, the plan is in motion.  There may be a detour to change the plan at one point, but I will know that within the next few weeks and I know not only what the plan is, but what the detour will entail.  I can handle detours as long as we keep moving.  I would be surprised if there aren't some detours along the way.  But, I think as long as we all discuss the plan fully and keep moving forward, I will be OK.

Monday, July 27, 2015

I Don't Want to Think About It

I don't want to be whiny and self-absorbed.  I've really been trying to avoid that from taking over much of my life and I really didn't want it to take up space here.  But, it's how I feel sometimes and I decided it was time to share it with all of you.  So, fair warming, this is bound to be a little snively, so read at your own risk.
Sadness from Disney's Inside Out
I don't want to think about cancer.  I'd like just one day when it doesn't enter my mind.  I'd actually like just a very small part of one day when I don't have to think about it, when I can go somewhere and do something and leave it all behind.  The problem is when something is inside your body it goes everywhere with you.  EVERYWHERE!!!!

I was hoping that after surgery I would feel like it was cut out and gone!  Well, I don't feel that way.  I know part of it is that micrometastic tumor they found in one lymph node.  Part of it is having to ask the doctor if cancer cells could have escaped through my circulatory or lymphatic systems and be lurking somewhere else in my body.  Part of it is facing the reality that I intellectually knew, but didn't actually feel, that cancer will be a part of my life FOREVER.  Forever means forever.  Maybe someday I'll have a day or even a few hours that I don't think about cancer, but that day is not today.

It doesn't help that I'm in the middle of obtaining bids for a bathroom renovation.  I tried so hard to get life lined up before surgery so that once treatment started, I could just focus on treatment, healing, recovery, and fighting the battle of my life.  I need my energy focused on that with some left over for my family.  I don't have energy to take care of other issues that should have been handled before treatment began.  I don't have the energy to help myself fight cancer and heal from surgery and at the same time manage government red tape.  I am not paid enough for this.  :)  And, every time I have to deal with the bathroom modification issue, I'm reminded yet once again why I even need this.  CANCER made this a necessity in my life.

I realized this week one way I've been trying to not have to think about cancer constantly is to read A LOT.  But, even doing that doesn't make the thoughts go away for long.  In fact, no matter what I read, I can find a way to connect it to my current situation.  You would not believe how many times cancer shows up in random books.  If it's not cancer directly, it is something related to what I am currently experiencing.  For example. a character in the book I am currently reading is taking pain killers for an injury.  The description of his experience with pain medication immediately makes me think of my current pain medication and recovery from surgery.  I just can't get away from it.

Why?  Because it is part of me. It is inside my body and goes wherever I go.  If I catch a glimpse in a mirror, or window reflection, I am reminded that my body looks different.  If I move a certain way and get a twinge around my incision, I am reminded of my surgery.  When I have to plan my life around doctor appointments/treatments, I am reminded.  When I pick up the mail and see the insurance statement with yet another medical claim, I am reminded.

I don't want to think about it, but I must.  I do constantly.  It is a part of me forever.  So, if you've actually made it through my whining today, please don't let it make you afraid to talk to me about my life.  Cancer is a part of my life.  I may not want to think about it, but I do constantly.  Bringing it up does not make me think about it.  I'm already thinking about it.  Asking specific questions actually helps me give specific answers and focus on the reality of life, not just let things run rampant in my brain.  So, ask away.  Whatever questions you might have, don't worry about upsetting me.  Ask away.  But, please make sure that's only a part of what we talk about and do.  Cancer is only part of my life.  Help me find other fun and exciting things to do/talk about.

I'm really identifying with Sadness from Disney's Inside Out today (and a little bit with Anger too)

Good Advice

Good advice from Disney

Thankful thoughts for today:
Health insurance
New Recipes

Thursday, July 23, 2015

I Am Not Alone

Great reminder.

Thankful thoughts for today:
Contractor bids
Feeling up to being productive
Victory in the Valley
Cell phones

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Friday, July 17, 2015

I Always Get Up!

Thankful thoughts for today:
Frosted Mini Wheats

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Thursday, July 16, 2015

Hair: Stage 2

Today was Stage 2 of hair styles during this journey.  Following surgery, I realized I am unable to do my own hair at this point and while my husband has been wonderful helping where needed, including washing my hair, he is not a hair stylist.  He does not want to spend time making my hair gorgeous every day.  My care attendants are happy to help but are not always here at the exact moments I need my hair done.  So, I went to the salon looking for a solution this morning.  I did not take any pictures this time.  I just told my stylist I wanted something shorter that I could just wash, put product in, and let air dry.  Then, I let her work her magic.  Here is the result.
 At this moment, I am quite happy with it;.  My stylist works miracles.  :)    I just hope it's as easy to take care of as she said it would be.  We'll see in the morning.  Besides, I told her there are three options here: 1.  I will love it and want to keep it like this regardless of my future
                      2.  I will not love it and just grow it back out.
                      3.  If chemo is in my future, it will all fall out or be shaved off completely anyway.

Exhale Gratitude

Thankful thoughts for today:

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Wednesday, July 15, 2015

Two Steps Forward, One Step Back

This is not a good day.  I've heard the saying "two steps forward, one step back" many times in my life, but I seem to forget about it.  Somehow, I had thought recovery would be a steady progression forward.  Some days slower than others, but still moving forward, each day better than the one before.  Well, today proves that is not correct.  Here's a picture of what recovery is actually like.

Yesterday was a brighter day.  I think I got a bit cocky about my recovery.  I was able to get a t-shirt on, my pain was manageable with less pain medication, I felt good.  Well, perhaps I took feeling good for granted.  My husband tells me I overdid myself.  We took a walk/powerchair stroll to Walgreens and later in the day to the YMCA where I worked out.  I found myself feeling up to doing more housework and not just sitting around all day.  Well, today, I feel like pulling the covers over my head and staying in bed all day.  Back to button down shirts, staying home all day, and taking pain medication faithfully.  Maybe this is a good lesson in doing all things in moderation.  :)

Maybe this is good preparation for whatever is to come.  There will be good days and bad days and I will handle whatever comes my way.

Treatment Plan

What's next?  What is cancer treatment really all about?  When will I be done?  When can we stop focusing on cancer?

These are all questions that I've been asked.  The short answer to when will I be done and when can we stop focusing on cancer is NEVER.  Once cancer becomes part of your life, it will FOREVER be part of your life.  There will come a day when there will be less of a focus on cancer treatment, but it will FOREVER be a major part of my life.

I am not a doctor so I can only speak about my own experience and my limited knowledge of what is to come.  As I learn more, I will share more, but here is what I know for now.

I consider the three phases of cancer treatment--cutting, burning, and poisoning.  And while you do all of these things to the cancer cells/tumor, since it is inside your body, you are doing these things to yourself including your healthy cells.  Step one for me was cutting (or surgery).  I thought having a bilateral mastectomy and sentinel node dissection would be the end of this step.  One major surgical event cutting the cancer out of my body and on to the next step.  However, I may be facing another surgery in the near future to remove more lymph nodes.  So, the cutting step may not yet be complete.

I have been told that burning is now off the table.  Since I chose a bilateral mastectomy, radiation is not in my future.

Next comes poison.  (That is my word for chemotherapy).  Will it or won't that be a part of my treatment plan?  I don't know.  So, we wait.  We wait until I have my appointment with my oncologist at the end of the month to get my Oncotype DX number and determine the next step.

I may not know what comes next, but I do know that I will eventually be on hormone therapy.  My cancer is highly Estrogen and Progesterone receptive, so I will be taking medication to block those hormone receptors on any cancer cells running around my body for a minimum of 5 years

Please hang in there with me as I go through whatever is next for however long each step takes for the rest of my life.

Thankful thoughts for today:
Tank tops
Repaired tire
Cell phone

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Saturday, July 4, 2015

I Looked in the Mirror

I looked in the mirror and what did I see.  I saw a warrior staring back at me.  I saw a different image than I am used to seeing.  The only real difference was the incision across my chest.  I have a long lateral incision that runs from arm pit to arm pit.  We measured it and it is approximately 27 inches long.  My first response was that I had been fileted.  The hunters/fishermen in my life tell me the incision is the wrong direction for that.  It should be vertical.  :)  I know I have not been gutted because my body still functions like all my innards are intact.  :)  But, I at least feel fileted, even if they went the wrong direction.

I realized what I now have is a visible reminder of the battle I am fighting .  Every time I catch a glimpse of my incision or at this moment feel it healing, I am reminded to fight.  My own body has been attacked, but I am fighting back.  I am willing to do whatever necessary to rid myself of this invader.  Surgery was the first step, but it will not be the last.

Will I scar?  Probably.  I look at my incision and can't imagine how I wouldn't scar.  But, that scar is a visible reminder of the battle I am fighting.  I hope to one day be able to look at it and see it as a visible reminder of my victory.

In the Selection series by Kiera Cass, America Singer talks about scars and says

“The best people all have some kind of scar.”  Some are visible, some are not.  But, everyone who fights ends up with some form of scar.

“On the girl's brown legs there were many small white scars. I was thinking, Do those scars cover the whole of you, like the stars and the moons on your dress? I thought that would be pretty too, and I ask you right here please to agree with me that a scar is never ugly. That is what the scar makers want us to think. But you and I, we must make an agreement to defy them. We must see all scars as beauty. Okay? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means, I survived.” 
― Chris CleaveLittle Bee

“It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” 
― Rose Kennedy

Thankful thoughts for today:

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Friday, July 3, 2015

Good News/Bad News

Waiting.  That seems to be the story of my life right now.  Just waiting.  The good news is I feel more peace about waiting.  I had an appointment with my surgeon this week.  That led to still more waiting, but also confirmation of the plan in place.

Drain bags = Waiting.  Probably, the most annoying part of this process to date has been the drain bags required after surgery.  They do not hurt, but they are annoying to deal with daily--for myself and my helpers who have to drain them and record their output.   One had almost quit having anything in the bag, but had started leaking out of the drain bag site at night.  The guess is that this one has a clog in the tube inside my body that we can't address.  So, we leave the tube in so the drain site hole will remain open and it can leak out of my body.  GROSS!   I don't even want to think about what is escaping from my body.  I was not surprised to hear they have to stay in for awhile longer, but I was pretty disappointed. Drain bags are annoying!

I did receive good news.  The surgeon agrees with the oncologist decision to run an Oncotype DX test.  Both agree that test will give us the information needed to make a decision about  chemotherapy.  The good news is if additional surgery to remove more lymph nodes is needed, it will not affect my long term arm strength or mobility.  The good news is my overall immune system is in good working order and would remain that way even if I need further lymph nods removed.  The bad news is the chance of lympodema would increase in my right arm.

The bad news is one lymph node was micro metastatic.  That means some cancer escaped from the primary tumor and is now able to run around my body.  Is it possible the only cells that did that were in that one lymph node that has been removed and my body is now cancer free?  Yes.  Is it possible other cells have made their way to other parts of my body through my lymph and circulatory systems and are just hanging out, hiding in other parts of my body?  Yes.  TheOndotype  DX test is supposed to help us decide the next step.  The Oncotype DX number should tell us if the cancer will be receptive to chemotherapy or not.  We know this cancer is highly hormone receptive, so hormone therapy will be happening.  The point of hormone therapy is to block the hormone receptors on the cancer cells wherever they are in my body, so they cannot feed on hormones and in effect, starve to death.

So, we wait.  I sit in my spot on the reclining couch and only leave the house for appointments until these drain bags come out.  I wait to get the Oncotype DX results to know the next step. in my cancer treatment.  I wait for things to get finalized so my master bathroom can get modified.  I wait for my other house to sell.  I wait.  And I try not to go crazy during the process.

Thankful thoughts of the day:
Zip front shirt
Movie marathons
Reclining Couch

If you like what you're reading, please follow this blog.  It's a great way to see when I've posted something new.  And leave comments.  I'd love to start a conversation!

Tuesday, June 30, 2015

My "No Visitors" Sign is Down

My "No Visitors" sign came down today.  So that means besides phone calls, emails, following this blog, you are welcome to come visit.

I saw my doctor today and at this point, my immune system is still good.  That could change in the future as more treatments happen, especially if they include the removal of more lymph nodes and/or chemotherapy.  At this moment in time, though, my immune system is working.

Please call before you come since I do have appointments happening.  And, once these drain bags come out, I might be out doing some visiting of my own (or shopping, or eating out, or watching movies)  :)

Please be respectful of my decreased energy level.  I'd like to jump right back into normal activity, but I did have major surgery a week ago and I'm still pretty tired.  I'd love to see you, but maybe not for hours at a time. :)

And We Wait

I had an appointment with the oncologist today to go over my pathology report and create a plan for the future.  I've been excited and nervous for this appointment.  I am ready to have a plan in place and get things moving.

Well, we are still waiting.  My pathology report was somewhat inconclusive and more testing needs to happen before we make a decision on the next step.  The good news is the tumor was only 1 cm and the margins were clear.  There was nothing additional found in the breast tissue.  The confusing news is about the lymph nodes.   The dye only reached two so only two lymph nodes were taken out and tested.  One was negative.  Yay!!!  One was micro metastatic  1..8mm.  So, what do we do next?  The oncologist thought we needed more information from more lymph nodes.  That means more surgery.  BOOOO!!!

After discussing the impact of additional surgery on my arm strength/usage, we decided to wait on surgery.  An oncotype dx test will be performed on my slides and the results of that test will  help determine the next step.  So, I'll be waiting on those results for the next 4 weeks or so.  What does that all mean?  I'm glad I have a great treatment team to figure out my options and help me balance the risk of cancer vs. the risk of side effects.  I certainly couldn't figure this all out on my own.

My mom asked me if I had been praying for patience since I'm sure getting reasons to practice patience lately.  :)  I wonder when I will have learned patience.  I know I'm not there yet.  This waiting is about to drive me crazy!!!

Thankful thoughts for today:
Treatment Team
Fresh Air

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Monday, June 29, 2015

Expectations vs. Reality

Expectation: I will need assistance after surgery
Reality:  I definitely need assistance after surgery.
I am so thankful for the great assistance I have had.  My wonderful husband took a week off work to help me with surgery and follow up.  My mom came to spend some time with me and will be handling the assistance I need while my husband goes back to work.  I"m so thankful for great family and friends.

Expectation: I will have no use of my arms for an indefinite period of time
Reality:  I can move both arms to shoulder height and have almost 100% usage of my left arm and more of my right than I expected at this point.
Stretching and twisting is not possible, but I don''t think that is really a indication of arm usage.

Expectation: I will never need to wear a bra again if I don't want to
Reality: I have to wear a post surgical bra to help protect my incision as it heals and provide pockets to hold my drain bags. 
I guess I have some more waiting to do before I can choose to go bra less.

Expectation: I will manage after surgery pain with no prescription pain meds
Reality:  I've been taking pain meds as prescribed regularly
I have a history of managing pretty serious medical issues with over the counter pain medications by choice because I tend to have annoying side effects from prescription pain meds.  I would generally much rather deal with pain than side effects.  PTL there have been no annoying side effects this time around.

Expectation: I will not be up for visitors for awhile
Reality: I am not up for visitors for awhile.
I expected to not be up for visitors.  I did not expect being quite so exhausted.  The beginning of the week I could only manage to be awake and fully functional for about 30 minutes at a time before it was time to sleep again.  I am now able to manage a little longer at a time, but still needs lots of naps all day long.  Part of the reason I am not up for visitors is that I can't stay awake.  Part of the reason is that I just want to stay in pjs all day and not do my hair.  So, I just don''t feel "dressed for company" and don't really want to get that way.  Love you all, but I'm still not ready for visitors.

Expectation: Taking care of my drain bags will be annoying
Reality: Taking care of drain bags is annoying.
Taking care of my drain bags is super annoying.  This is something I definitely need help doing.  I was so concerned with how I would possibly manage drain bags and wheelchair usage/transferring.  I'm so thankful that my surgeon took my concerns seriously and made my tubes shorter so that I carry them in drain tube bags attached to my surgical bra so there is no interference while transferring etc.  But, they are still annoying.  My son was a bit concerned about what exactly is draining out of my body.  A little gross to think about.  Drain bags remain in place for 1-4 weeks after surgery.  I'm praying for closer to the one week mark.   Drain bags are so annoying!!!  Plus it's extra annoying that I need bigger sized shirts to button around the drain bags.  GRRRR!

Expectation:  I will have a scar when this is all over
Reality: I will definitely have a scar when this is all over.
I can't imagine I won't have a scar when this is all over.  My incision is 26-27 inches long from armpit to armpit.  More on this later.

Expectation: I will need button front shirts for awhile
Reality: I need button front shirts for awhile.
So thankful I had done some research about what I would need post surgery and had some already purchased.  Thanks mom for getting me some really soft ones to help get me through this initial healing phase.

Expectation: I will not wake up from this surgery
Reality: I woke up in recovery
I woke up the day of surgery nervous, unsure of what I was about to do, but feeling like I was making the right decision for myself and my family.  I did some final preparations around the house and then checked my Bible Gateway verse of the day.
"The Eternal will keep you safe from all of life’s evils, From your first breath to the last breath you breathe, from this day and forever."
Psalm 121:7-8
My interpretation of that Monday morning was God would keep me safe until my last breath, which would be later that day.  I didn't tell a sole that was what I was thinking and I went through all the pre-surgery prep as planned.  So my expectation was that I would not wake up from surgery in this world.  Imagine my surprise when I did.  I then told my husband my interpretation of that verse and he thought I was silly for thinking that.   It obviously means God will be with me through whatever I am facing, including surgery and recovery.  :)

Expectation:  Aggressive cancer treatment will help me live a long, healthy life
Reality:  That is still my expectation, but we'll have to wait awhile to find out reality.

Expectation: Dealing with "What Is" is better than dealing with "What If"
Reality: Dealing with "What Is" is always better than dealing with "What If"
I can stop imagining worst case scenarios and start dealing with reality.  Reality is not exactly fun, but it is better than some of the crazy scenarios I had created in my head.

Expectation: I will not be able to eat or sleep normally for an indefinite period of time
Reality:  I have no restrictions on eating and have been sleeping well all day and night (until Saturday  night)

Thankful thoughts for the day:
Reclining couch
The Selection Series
View of my backyard

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Friday, June 26, 2015


Thankful thoughts for today:
Reclining Couch

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Thursday, June 25, 2015


To Do List

This is what I would like my days to look like right now--just a repeat of the above three things.  During the survive phase, it includes things like take pain meds, eat a little something, empty drain bags and dress wound, maybe read a little,  blog a little, check email.   I don't have the energy to handle things like my bathroom project right now even though right now is when I need it done.  So, what do I do?  I think this list is about right.  That's all I can do right now.  Wake up.  Survive for 30-60 minutes max.  Go Back to Sleep,  Repeat.

Why Would I Choose Pain?

When I am feeling good right now, why would I choose pain?  Why would I choose surgery knowing that will take me from feeling good to really feeling not good for who knows how long?  Why would I willingly choose something that will decrease independence and mobility for an indeterminate amount of time?

That's a question I've been asking myself a lot over the past few weeks and have even been asked by others.  If I feel good, why would I make a choice that will leave me feeling not good?

I think this is a choice we should all be making at times throughout our lives.  Not everything in our lives is 100% pleasant, nor should it be.  We choose to work hard in school knowing the long term results are worth it.  We choose to study instead of partying to enjoy long term rewards.  We choose short term pain of childbirth for the long term joy of parenting a miracle.

If we only ever got exactly what we thought we wanted at that moment, how would we ever grow or be truly successful or joyful?  I will not live a life of entitlement.  I do not deserve to have everything I want handed to me and I will not demand it.  I will not focus only on experiencing  pleasure.  I will not expect the world to cater to my wishes.  Sometimes, there must be short term pain in order to experience long term success.

This whole thought process reminds me of the subjective pain scale at doctor's offices/hospitals. "How is your pain on a scale of 1-10?"  Compared to what?  Compared to the worst pain I've ever experienced?  Compared to childbirth?  Compared to a splinter in my finger?  I guarantee pain scale numbers are different for everyone.  When I was asked that question this week, I found myself comparing it to pain I have experienced in the past and knowing that my son writhing in pain a couple of weeks ago rated his at a 5 or 6.   How can I complain when mine can be managed by pain meds?

Why would I choose pain?  Because there is an invader in my body that if left alone, will cause more pain and destruction in the future.  Because this relatively short term pain, will hopefully allow me to have a long, cancer free life.  So, I choose pain.  I choose to not ignore cancer and hope it will someday go away on its own.  I choose short term pain for hopefully long term health.

The good news is this world on Earth is short term and Eternity will be full of health and minus all these short term problems.

"For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.."
                                           2 Corinthians 4:17-18 (NLT)

Thankful thoughts for today:
Maintaining arm strength
Time to sleep
Pain medication

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Monday, June 22, 2015

I Am Not a Sideshow Attraction

I've been asked a lot what I need.  What I mostly need is prayer, love, support (from a distance), and respecting my wishes and decisions about the choices I am making as I deal with my cancer treatment.

I am requesting no visitors (other than designated caregivers) until after my first post op appointment.  At that point, I'll let you know if the no visitation policy has changed.

I am going to spend a few minutes dealing with what I don't need.  
I don't need anyone coming over to stare at my new body like a sideshow attraction.
I don't need any crass comments.
I don't need anyone communicating with me like cancer is a death sentence.  That is not how I am choosing to address this.
I don't need negativity of any kind around me.
I don't need people assuming they know better than I and my doctors do about how to treat this cancer.
I don't need anyone getting bent out of shape about any treatment decisions (including my no visitors policy)
I don't need you to make this about you and your need to take care of your guilt about your aunt, cousin, friend, grandmother who had cancer and died.
I don't need you to speak to me with sympathy and pity.
I don't need you to get after my husband for following my wishes and making sure my needs are met.

I do need love and prayer and for you to continue to communicate with me this way.
Check out this great article on the best way to comfort the cancer patient (me) and those around me.

Thankful thoughts for today:
Verse of the day

Sunday, June 21, 2015

I Thought I Was Ready

I thought I was ready.  I've been saying for years that whenever Jesus comes for me, I am ready.  This world is not my home and I am ready to move on to my true home in Heaven.  I've also been saying that if I was ever diagnosed with cancer, I wouldn't treat it.  I would just accept that as my time to go and enjoy whatever time I had left without medical intervention.

That all sounds great, but when I was faced with the reality of a cancer diagnosis, I changed my mind a bit.  I decided to do whatever it took, follow all recommended medical interventions, be as aggressive as possible to beat this thing.  I think in my daydream world, I figured a cancer diagnosis might come at a much later time in my life.  I thought I might be facing these decisions as an older woman with a grown family.  I never imagined I would be facing this diagnosis with children still at home.

My gut reaction was, "My job is not done!  I still have the awesome responsibility to raise these two precious gifts all the way to adulthood.  I can't leave yet."

Even as I read that I am a bit ashamed at how that sounds.  I know that God's plan for me and my family is much better than I could ever dream up.  I'm just blessed to get to be a part of helping grow these amazing kiddos on their journey to adulthood.  And, I will be a part of that important work as long as I can.  God will take care of me and my family.  I may not be able to see the big picture or even what is right around the corner, but I do know it will all work out great.  God loves us and will take care of me and my family.

If I were the author of my story, the cancer chapter would end with surgery and no needed follow up.  Who am I kidding?  If I were the author of my story, there wouldn't be a cancer chapter.  But, I am trying to trust God and let Him be in the driver's seat.  I'm trying to let Him drive and I'm trying not to be a backseat driver.  I can't see the end of the road, or even around the next curve.  And, I don't want to.  I'm not sure I would be traveling forward if I could see the valleys coming.  But, I trust God to be with me and get me safely through, whatever that means.

"Then he told them what they could expect for themselves: 'Anyone who intends to come with me has to let me lead. You’re not in the driver’s seat—I am. Don’t run from suffering; embrace it. Follow me and I’ll show you how. Self-help is no help at all. Self-sacrifice is the way, my way, to finding yourself, your true self. What good would it do to get everything you want and lose you, the real you? If any of you is embarrassed with me and the way I’m leading you, know that the Son of Man will be far more embarrassed with you when he arrives in all his splendor in company with the Father and the holy angels. This isn’t, you realize, pie in the sky by and by. Some who have taken their stand right here are going to see it happen, see with their own eyes the kingdom of God.'"
                                                           Luke 9:23-27  (MSG)

I started this post right after receiving my biopsy results.  While attending church, I found myself unable to sing about God taking me to Heaven.  I realized at that point that I was not ready to head to Heaven myself and leave my family behind.   I want to go to Heaven, but I'm not sure I want to go right now.  I just want Jesus to return and take us all to Heaven at the same time.  Maybe tonight?  :)
Whatever happens, I will be trusting God and trying not to be a backseat driver.  He can see the end of the road, I'll just trust Him to safely get us all there.

Thankful thoughts for today:
More lasts

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Saturday, June 20, 2015

"Capes Are So Last Year"

I learned some sad new throughout this experience--capes are not necessarily a good idea.  I was wearing my socks with capes and the cape got caught in my wheelchair casters and ripped right off.  My other cape was safely tucked into my brace.  So, now I have one sock with a cape and one capeless sock.  I wonder if they will still zoom me out of trouble?

If I had just paid attention to the Incredibles I would have already known that capes were not a great idea.  :)

I wonder if a mug with a cape is a better idea?  Do you think that is dishwaher or microwave safe?  :)

Thankful thoughts for today:
Smallville comicon
Farmer's Market
Garage Sales
Cousin Fun

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Friday, June 19, 2015

Keeping Life as Normal as Possible

In the midst of all this craziness, one of my biggest concerns is how to keep life as normal as possible for my family.  I have wonderful parents who are willing to do whatever to help make that happen.  Both my kiddos were signed up for church camp, but since my son had his own medical emergency, church camp was eliminated for him.  I'm so thrilled that he'll be spending the time at Grandpa camp instead.  He's pretty excited and I'm releived knowing that his medical needs will be addressed and he'll be in excellent care.  How do I manage to keep things as normal as possible when we're all home?  Our daily routine will be interrupted since I will not be leaving my house for awhile.  So, how do I keep things normal around here without resorting to too much TV/video games?

I just read an article in FamilyFun magazine titled, "The Happy Family Playbook."  So, here are their seven things to work into family life to help create happiness:
1.  Commit acts of kindness
2.  Lol-a lot
3.  Jump for joy
4.  Unplug a while
5.  Get into gratitude
6.  Go play outside
7.  Celebrate sunny thinking

The good news is we already lol and I'm sure we'll continue to do that.  I will just have to make a conscious effort to involve them in daily gratitude.  And, we already try to monitor screen time and will continue to do so.  We even have a list of things that must be  completed before screen time happens:  Reading, Clean Room, One Chore, Summer School, Something Creative (play, build, draw, etc.).  That is already a habit and will continue.

I think I'm going to need help from all of you to make this a summer of fun and not about cancer.  Any ideas?  Also, how do I help my husband feel like a loved and appreciated husband, and not a nurse?

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It's On!

Thankful thoughts for today:
New roof
New Fireplace
Family coming

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Wednesday, June 17, 2015

Finding Another Sisterhood

When I first became a member of the wheelchair users club, I was thrilled to find an amazing sisterhood through the Ms. Wheelchair Kansas program.  There was this amazing group of successful women who happened to use wheelchairs and could help me adjust positively to my new normal and live life successfully in my wheelchair.

I am now a member of another club, breast cancer patients/survivors.  This is not a club anyone would choose to join, but once you have joined, do your best to connect with other members.  If there is one thing I have learned, it is that those who have been there are the ones who can help you successfully navigate these uncharted waters you are about to go through.  Those who have been there can give the best advice about what may be coming and how to manage the future.  Those who have been there can empathize with what you are feeling because they've had those same feelings themselves.

I am thrilled to have found a support group through Victory in the Valley. It is nice to be in a room of people who have experienced what is coming in my life and can offer support and advice.  It was amazing to listen to my questions being answered before I could even voice them.  We talked about the very things I had been questioning and researching this week and I didn't even have to bring them up.  I left feeling more confident about the decisions I have made and more hopeful about the future.  I know that I am not alone as I go through this.  Although my treatment team of doctors has been amazing and patient about my multitude of questions, sometimes you just need a sisterhood of those who have traveled this way before.

I am thrilled to have found another sisterhood to help me adjust to my new, new normal.  :)
My daughter thinks it's funny that I am excited to go to support group.  She asked me if we meet in "the literal heart of Jesus."  Hee Hee We're full of The Fault in Our Stars references around here right now.  Thank you John Green for providing that emotional release for us.

Thankful thoughts for today:
Success Maker working
Victory in the Valley
Roofers working
Thank you gifts

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Monday, June 15, 2015

Thank God Through It All

Cancer Will Define My Life Forever--Part 2

This is the week I've really begun seriously researching what I am about to experience.  I've been making a list (and checking it twice or three or four or more times.)  :)  I've been trying to make sure I'm as prepared as possible for my upcoming surgery, recovery etc. both physically and emotionally.

I've been living under the mistaken assumption that maybe I could have surgery only and other than a changed body and ongoing hormone therapy, life could quickly return back to normal.  I've been working on boosting my immune system for improved healing after surgery.  Well, today I discovered what I think I've known all along--cancer changes your life forever.

Surgery will include the removal of lymph nodes.  I knew this would weaken my immune system for awhile.  What I don't think I fully realized until today is that we are talking about a permanent change.  Lymph nodes will be removed from my body and they do not grow back.  What this means is that part of my lymphatic system responsible for fighting off infection will no longer be working.  I have been under the mistaken assumption that I just have to be careful to protect my immune system for awhile until it starts fully functioning again.  Although the human body is an amazing thing and it's possible for other lymph nodes to work harder to pick up the slack of the missing lymph nodes, my immune system will be permanently altered.  This is going to be a lifelong battle.  Lymphedema can develop at any time, weeks, months, years after surgery.

My life will be forever defined by cancer.

Thankful thoughts for today:
Preparation time
Restaurant reopening
Ice Cream

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Friday, June 12, 2015

When One Domino Falls

One domino fell out of line today and it's been feeling like much more of a catastrophe than it is.  I know what horrible days are, and this is not it, but I still feel pretty panicked.  I thought I had my dominoes all lined up neatly and as they wavered out of line, there was still time to set them back in line and keep moving forward.  Well, the time for arranging dominoes is quickly coming to an end.  I can see the sand flowing through the hourglass and time is almost up.

So, I was devastated when I was told today that there is no way the bathroom can be done before surgery.  It cannot even go back before committee until that date.  So, although I am thankful for Plan B options, I don't like to think about them.  How am I supposed to relax before surgery knowing this is not settled?  How am I supposed to recover when contractors are working on my bathroom after surgery?  How I am supposed to mange bathroom needs during recovery when my master bath is unusable?  

I'm panicking.  What if we wait so long the contractors can no longer wait on me and can't get to the job for weeks or months?  What if in my panicked state I've done something to make this an even longer process?  

What if one domino falling out of line is only a precursor of what is to come?  What if I'm looking forward to a multitude of disappointments?

This has been a "what if" day and I know I shouldn't do that.  Now that all of you have gotten to experience "what ifs" with me, I will turn my focus to "what is" and figure out what's next.  One domino falling out of line is not the end of the world.  It is just a turn in a different direction and requires more thought about "what's next."

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What Do I Need?

What do I need?   I've been asked that question a ton of times and the reality is I'm a little overwhelmed and not sure what is coming so I'm not sure what I will need.

Right now, I'm needing my construction projects to all be finished.  The good news is, they are in the works with a hopeful completion next week.  There are day to day needs that pop up, but at this moment, they are being handled one need at a time.  I have excellent caregivers lined up for immediately following surgery.  I'm so thankful for my husband and my mom changing their schedules to help me out.

I don't have all my needs for post surgery care figured out yet, but I'm working on it (and I'm sure I'll get more details from my surgeon and the surgical center).  I will learn about wound care and redressing my surgical site the day of my surgery.  I have been learning that infection control will be an important aspect of my aftercare.  I am asking for no visitors other than caretakers and immediate family for the first week.  And then, use discretion and don't bring anything contagious into my home.

I know I need a ton of prayers and I need you all to not disappear from my life.  I need you to respect the need for infection control and not get bent out of shape if you're asked to physically stay away for awhile.  I need you to respect my changes in energy level and changes in communication level.  I will do my best to stay in touch with all of you, but I may not be able to manage more than a few minutes at a time.

I don't know what's coming and don't know what I will need.  Just stay with me throughout these week, months, years.

Thankful thoughts for today:
Church family
Cell phones
Plan B

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Thursday, June 11, 2015

The "Lasts" Have Begun

Today I had my first of many "lasts" that I know are coming.  I went to my class at the YMCA for the last time before surgery.  I've probably already had tons of "lasts" and just not been aware that they were the last.  Now, I know it's not the last forever, but it is the last before surgery.  The worst thing about it all is the undetermined amount of time before I can begin having these experiences again.

 When I talk about "lasts" I am aware this is not finality.  But, at this moment, it feels like it.  Not being able to see the end in sight, not knowing how long this will last, is the worst.  I could be having hiatus from events that are no longer than an extended vacation, a couple of weeks or so.  I could be looking at 4-6-8 weeks.  Or, I could be looking at months, or years, or even permanent changes could be coming.  I think not knowing is the worst.  I don't really know how to prepare and no one can tell me how to prepare because no one knows the answers at this point.

Those of you who know me well know that I don't do well with changes.  I do better with changes if I have as many facts as possible ahead of time.  My favorite part of big vacations is the planning phase.  I really don't do well with changes if I can't see the end in sight and don't know what changes are coming.  And, that is where we are.  It feels like opening a door and stepping into darkness leaving everyone and everything I know behind.  I've been told I will come back to that room of familiar people, places, and things.  But, no one knows how long it will take.  No one can tell me for sure what's in the darkness. No one can tell me if the floor is solid or if I am about to go for a free fall.  No one can tell me if I am about to walk through a door and circle right back around to my familiar life or if I am going to have multiple obstacles and challenges to claw, scrape, and climb my way through.  No one knows what is coming.  Can I just pull the covers over my head and not go through that door?

So, the "lasts" have begun.  Now, how to cram everything important into my last week?  What are some things I should be sure not to miss; to definitely have an intentional "last" experience?

Thankful thoughts for today:
Back to double digits

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