27 Years Ago Today…

Thank You dear Lord, for 27 years of marriage to my best friend, John.  We are two sinners who both mess up plenty, saved by God’s grace, who desire to learn to walk closely with the Lord and each other, day by day through the ups and downs of life.  I am so very grateful for John who loves and cherishes me both in sickness and in health til death does us part.  I have been accepted and cared for and loved whether I have breasts and hair or none of these because of cancer, whether overweight or slender, during heartache and tough times or immense happiness and great times.  I am so very grateful to share and “do life” with the Love of my life!  Thank You God for this 27th wedding anniversary to remember both Your faithfulness and loving kindness as well as my dear husband’s. Here’s to many more years together!

Paula

“Why My Gray Hairs Make Me Happy” Link

I like the message and perspective of the gal in this link.  It’s worth watching IMHO.  Signs of aging and birthdays are a VERY good thing! 🙂

 

Yesterday I had my second Abraxane infusion. Just three more to go, yahoo!  All went smoothly and the time passed quickly with the good company of my sweet friend Jacque and I had some nice chats with other patients getting chemo too.

 

Gratefully His,

Paula

 

“When Christmas Isn’t So Merry” Link

 

Laughter is part of my personal battle plan in my cancer fight and something about this video totally cracks me up!  🙂  Please know that no offense whatsoever is intended towards anyone who is German.

Below is a poignant blog post, “When Christmas Isn’t So Merry” by Jessica Lynn Nelson that I saw on Social Media…(Thanks D.M.!) good stuff.  This can be an especially hard time of year for many people. for a variety of reasons. The quote by Karina Allen that jumped out to Jessica, was meaningful to me too: “He [God] desires us to be beyond honest with Him and to hear His truth louder than our feelings.”

 

 

http://www.jessicalynnnelson.com/2016/12/11/when-christmas-isnt-so-merry/

 

 It’ll be nice treat not to have chemo tomorrow.  It’s a “Herceptin only” day.  Hooray!

Paula

Renewed Focus on a Balding, Pimple-Headed Day :)

I have about 100 little sores all over my  scalp that have been popping out after the last chemos that have been bugging me.   I sure am glad they aren’t plastered on my face, ha, ha!!! When I went through chemo in 2011  I had a mouth full of chemo sores and they crept down my throat and up my nose and this is MUCH easier!  Our skin is a major excretory organ and I know it’s probably a good sign that my body is trying to eliminate the junk.  Yesterday though  I was feeling rather sad and crabby and low about having a balding “Pimple Head”.     I was feeling sorry for myself and self pity  is never a good thing. My remaining hair is in a really funky state as I haven’t buzz cut it yet but probably will soon. I  pictured  sticking a brown paper sack over my head with eyes cut out instead of gratefully using the beautiful hats, scarves, and wigs I have.  There are a lot of adjustments in self image that come along with cancer and honestly, yesterday I was feeling pretty ugly all over.

 

 

This short, fun video clip below , “Christmas Presents” was just the reminder I needed today .   It makes me smile and I  love it and I hope you do too!!!!    It got me to thinking that these sores are an object lesson in the “Pimples of Life” that every one of us has in various forms and where we choose to focus when hard things happen or when life isn’t going the way we wish it would. May God give us fresh perspective and eyes to see the blessings and gifts He is LAVISHING on us that are so easy to take for granted.

 

 

This song was also another lovely blessing to start my day:

 

 

Here’s to a wonderful weekend for all of us with hearts overflowing in gratitude, which is always our very best choice in the midst of the “Pimples of Life” we all deal with sometimes!

Paula

One Abraxane Infusion Down, Four To Go

 

Doctor: Nurse, how is that little girl doing who swallowed ten quarters last night?

Nurse: No change yet.

—————————-

Patient: How much to have this tooth pulled?

Dentist: $100.00.

Patient: $100.00 for just a few minutes work?

Dentist: Well, I can extract it very slowly if you like.

—————————

 

Wow, am I ever thankful for a blissfully uneventful chemo infusion  with Abraxane yesterday!  Thanks for praying.   One down yesterday, four more to go.  It’s on a three week on, one week off cycle so in meshing the two protocols and accounting  for the Taxol cycles already done or skipped, next week I will only get Herceptin.  My white count was  back down low again when checked before chemo but still high enough to get the infusion.  I had some vomiting, dizziness,  and was feeling pretty awful earlier this morning but am grateful to be doing some better now. 🙂

Praising God from Whom all blessings flow,

Paula

 

Did You Know You’re Contagious?

(Copied and pasted from: http://girlfriendsingod.com/know-youre-contagious/)

Thanks for passing this along, Becky!

by Sharon Jaynes

Today’s Truth

Rejoice in the Lord always. I will say it again: Rejoice!

Philippians 4:4

Friend to Friend

“Have you ever noticed just how contagious grumbling is? Someone complains, and the next thing you know you’ve joined in and are complaining right along with them.

How do you think that grumbling started with the children of Israel in the wilderness? I think it went like this. One person picked up her manna for the day and said, “You know, I’m sick of this manna.” Then someone else picked up his and said, “Come to think about it, I’m sick of it too.” Then a neighbor agreed and it spread, and it spread, and it spread. Next thing you know 2 million people are grumbling and complaining. Then a sea of ingrates wandered around the desert for forty years.

But just as grumbling ingratitude is infectious, so is grateful gratitude. One day I was in the airport headed to New Jersey. It was a typical rush, rush, rush morning. Grab the bags, trudge through traffic, hunt for a parking space, follow the herd, wade through security, dash to the gate.

Folks aren’t usually very friendly in airports. Eyes look straight ahead. Purposed feet slap the floor. Overstuffed bags roll behind. It’s not that people are grumpy. They’re just “flatish.” (That’s a new word for today.)

On this particular morning, I looked just like everyone else. “Flatish.”

Before settling in at my gate, I decided to make one last trip to the restroom. I’m so glad I did. It was one of the most joy-filled places I had been in a long time.

Gretchen, the “hostess” for this privy, donned a silly little hat on her head with whimsical feathers waving about the top. If it wasn’t for the official attendant’s vest she was wearing, I might have thought she was on her way to Mardi Gras. With a spray bottle in one hand and a cloth in the other, Gretchen welcomed each “guest” into her “home.” “Come right this way,” she cheered as she opened a stall door for her next visitor.

A woman in a green jacket exited a stall and Gretchen swooped in behind her. Squirt, squirt, squirt with the disinfectant. Wipe, wipe, wipe with her cloth.

“Right this way, madam,” she motioned to the next person in line, “This one is ready for you! Come right in!”

With all the poise of a valet opening the castle doors for a person of honor, Gretchen welcomed each woman as if she were the most important person in her day. I stood back and watched as this 5-foot-5-inch bundle of joy wiped off toilet seats and cheerfully invited her next guest into the pristine stalls. Gretchen had an effervescent sense of joy … wiping toilet seats. It seemed to come from a deep-seated heart of gratitude. And it spilled over to every single woman who left her station.

Women entered weary and worn and left with a skip in their step and a smile on their face. Some even lingered…as if they wanted to soak in just a little bit more before facing the world. I was one of them.

On the counter rested a tip jar filled to the brim with thanks. But I don’t think the “tips” were for wiping the germs away from the toilet seats, but for wiping the doldrums away from their hearts and frowns off of their faces. And for some strange reason, I just wanted to give Gretchen a hug. I did. She didn’t mind.

Gretchen reminded me just how contagious gratitude and joy can be, and how desperately I want to be a carrier. I hope you do too.

Let’s Pray

God, I am so thankful today. Thank You for eyes that see, ears that hear, lips that speak, legs that walk, and arms that hug. Thank You that I have a roof over my head, shoes on my feet, and food in my pantry. I pray You will set a guard over the door of my mouth so that no grumbling will escape its threshold. Help me be a contagious carrier of gratitude.

In Jesus’ Name,

Amen.

Now It’s Your Turn

Get a piece of paper and write the numbers 1-100 down the left-hand side.

Then write down 10 things you are thankful for by numbers 1-10.

Tuck the list into your Bible and add to the list as things you are grateful for come to

mind.

When you get to 100, email me at

Sharon@sharonjaynes.com and say, I made it to 100! (my note: I’d love to hear about it here in the replies too if you have time!  Cultivating gratefulness is a real game changer in our lives, huh?)

More From the Girlfriends

Do you long for something more in your relationship with God? Do you have a “glory ache”—a hunger to experience God’s presence on a daily basis? The good news is that God wants that even more than you do. Right smack dab in the spin of the laundry and the sizzle of the bacon—as you live and more and have your being in Him. Dust for His fingerprints on the pages of your everyday life. My book, A Sudden Glory: God’s Lavish Response to Your Ache for Something More will show you how. Click on the link to read a sample chapter. I think you’ll be hooked. It also includes a study guide and free online Bible study videos.“

Plans For Abraxane to Replace Taxol Today

 

Bob was in trouble. He forgot his wedding anniversary. His wife was really angry. She told him “Tomorrow morning, I expect to find a gift in the driveway that goes from 0 to 200 in 6 seconds AND IT BETTER BE THERE!” The next morning he got up early and left for work. When his wife woke up, she looked out the window and sure enough there was a box gift-wrapped in the middle of the driveway. Confused, the wife put on her robe and ran out to the driveway, brought the box back in the house. She opened it and found a brand new bathroom scale. Bob has been missing since Friday. 

 

 

A big thanks to my Joy for sharing this with me:

“Anchored in Love through the Storms of Life”: an interview with Bethany Hamilton (23 mins).  I love Bethany’s life story which was re-ecacted in the excellent movie “Soul Surfer”.

 

Psalm 73:26 (NLT)

²⁶ My health may fail, and my spirit may grow weak,
    but God remains the strength of my heart;
    he is mine forever.

Psalm 73:26 (NKJV)

²⁶ My flesh and my heart fail;
But God is the strength of my heart and my portion forever.

Psalm 73:26-28(MSG)

When my skin sags and my bones get brittle,
    God is rock-firm and faithful.

Psalm 63:1-4 (NLT)

¹ O God, you are my God;
    I earnestly search for you.
My soul thirsts for you;
    my whole body longs for you
in this parched and weary land
    where there is no water.
² I have seen you in your sanctuary
    and gazed upon your power and glory.
³ Your unfailing love is better than life itself;
    how I praise you!
⁴ I will praise you as long as I live,
    lifting up my hands to you in prayer.

Today as far as I know is Day #1 of a new chemo.  First I’ll have an appointment with my oncologist later this morning, then the plans as of now are for me to get Abraxane instead of Taxol.  I looked it up.  My knee jerk response each time I research these oncology drugs is “YIKES” and “”Please help me, God”.  The terrible bad things that could potentially happen directly because of the drugs themselves (but may or may not) is daunting to say the least. Abraxane is listed as a drug for different kinds of cancer: lung, pancreatic, and metastitic breast cancer.  I do not have metastatic breast cancer, as in it has not spread to other organs to the best of our knowledge gleaned from a bunch of tests.  This go-round is considered a second primary cancer but because I had allergic reactions to Taxol we are making the switch-a-roo to a “cousin” of Taxol that hopefully my body will tolerate much, much better.

Please pray that I will be brave.  This is scarey stuff.   I am asking God to give me all the courage and grace that I need and to live my life in HIS strength which I know to be more than sufficient.  I wish I was not going through this great. big mess and making decisions like trading one toxic drug for another but I am counting on the truth of Romans 8:28, that God works ALL THINGS together for the good of those who love Him and are called according to His purpose.  My heart’s desire is for the rest of the treatment to be extraordinarily effective and well tolerated, hopefully with minimal to no side effects if such a thing is possible and that the cancer will be gone for good. It would be lovely if I could have all smooth-sailing, uneventful chemo and Herceptin infusions from now on without the nurses and oncologist needing to rush to my side again with IV push drugs, etc. My times are in His Hands and that’s a good place to be no matter the outcome or what He allows or does not allow.  I am asking God to help me keep my eyes on Him, train me to grab a hold of His Hand and not let go, and to flood my heart with peace and full trust in Him, no matter what.

So very glad to be His beloved daughter,

Paula

Yikes-a-Roozy on Chemo “5”

 

 I Won’t Let Go Lyrics:

It’s like a storm
That cuts a path
It’s breaks your will
It feels like that

You think you’re lost
But your not lost on your own
You’re not alone

I will stand by you
I will help you through
When you’ve done all you can do
If you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go

It hurts my heart
To see you cry
I know it’s dark
This part of life
Oh it finds us all (finds us all)
And we’re too small
To stop the rain
Oh but when it rains

I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let you fall

Don’t be afraid to fall
I’m right here to catch you
I won’t let you down
It won’t get you down
You’re gonna make it
Yeah I know you can make it

‘Cause I will stand by you
I will help you through
When you’ve done all you can do
And you can’t cope
And I will dry your eyes
I will fight your fight
I will hold you tight
And I won’t let go
Oh I’m gonna hold you
And I won’t let go
Won’t let you go
No I won’t

My “WOW(s) yesterday:

An unexpected stellar Complete Blood Count which I attribute completely as a specific answer to the prayers of many. Thank you to those who prayed with me about this. The oncologist had not wanted to start bone marrow stimulation with Neupogen and I’m glad that he didn’t afterall.  There was no logical reason for the counts to improve so much after the trend of progressively increasing decline with the other treatments and no medical intervention other than one skipped chemo a couple weeks ago, but for God:

WBC 5.5 from 2.7 (normal 4.2 -10)

ANC (Absolute Neutrophil Count 3.5 from 1.1 (norma1 1.5 -6.5)

Hgb staying steady around 11.9 (normal 12 -16)

Hct ”              ”              ”         34.3 (normal 37 – 47)

Platelet rising to 268 (normal 140 – 440)

My WOWs also included blessings galore via Jacque, Ruth, and my family and nice chats with nurses and patients

My POW yesterday was a reaction to Taxol which necessitated it being  stopped after running slowly for 8 minutes following  the pre-meds of Decadron, Pepcid, Benadryl, and an anti-nausea drug .  I had something similar happen the time before but it was much milder, short lived, and resolved on it’s own that time. The reaction yesterday was honestly kind of scarey to me but it was resolved pretty quickly by stopping the chemo and giving additional steroid and more Benadryl IV push, bundling me up in blankets, heat packs to my arm pits and an ice pack to my low back. I must have looked like some kind of sick Abonimable Snowman in a recliner or something 😉

CHOW: I especially enjoyed the gift of a tasty, nourishing soup with lots of love sprinkled in there

My oncologist was off today and one of his partners saw me and intervened along with the nurses.  I should get input from my  oncologist next week to see if we will do another trial of Taxol with more pre-meds or switch to another chemo protocol

“Nothing you could ever experience, no matter how terrible or frightening, could ever separate you from the love of God. No tribulation and distress you might ever suffer could be so intense that God’s love for you is not even more fervent. No persecution could be so painful that God’s love cannot bring comfort. Famine might starve you of food, but you will never hunger for the Father’s love. Poverty cannot strip you of God’s compassion, just as even death itself is incapable of robbing you of your heavenly Father’s infinite love.If you base your view of God’s love on your circumstances, you will become confused. There may be times when you will ask, “How could a loving God allow this to happen to me?” You may begin to question what you find clearly stated in the Word of God. God promised that you would never be separated from His love; He did not say that you would never face hardship, persecution, poverty, or danger. If you doubt that God could love you and still allow you to experience difficult experiences, consider the life of Jesus.

If you allow the death of Jesus on the cross to forever settle any questions you might have about God’s love, you will approach difficult circumstances with confidence. Knowing that there will never be anything that could separate you from God’s perfect love, you will watch to see how God expresses His love in each circumstance. Don’t ever judge God’s love based on your circumstances. Instead, evaluate your circumstances from the perspective of God’s love.”

—Unknown Author

Romans 8:35-39

New Living Translation (NLT)

³⁵ Can anything ever separate us from Christ’s love? Does it mean he no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? ³⁶ (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.”^[a]) ³⁷ No, despite all these things, overwhelming victory is ours through Christ, who loved us.

³⁸ And I am convinced that nothing can ever separate us from God’s love. Neither death nor life, neither angels nor demons,^[b] neither our fears for today nor our worries about tomorrow—not even the powers of hell can separate us from God’s love. ³⁹ No power in the sky above or in the earth below—indeed, nothing in all creation will ever be able to separate us from the love of God that is revealed in Christ Jesus our Lord.

 

WOW/POW/CHOW

Matthew 6:25-34(NKJV)

Do Not Worry.

²⁵ “Therefore I say to you, do not worry about your life, what you will eat or what you will drink; nor about your body, what you will put on. Is not life more than food and the body more than clothing?²⁶ Look at the birds of the air, for they neither sow nor reap nor gather into barns; yet your heavenly Father feeds them. Are you not of more value than they? ²⁷ Which of you by worrying can add one cubit to his stature?

²⁸ “So why do you worry about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin; ²⁹ and yet I say to you that even Solomon in all his glory was not arrayed like one of these. ³⁰ Now if God so clothes the grass of the field, which today is, and tomorrow is thrown into the oven, will He not much more clothe you, O you of little faith?

³¹ “Therefore do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ ³² For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. ³³ But seek first the kingdom of God and His righteousness, and all these things shall be added to you. ³⁴ Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.

 

 

Do not fear.

Isaiah 41:10 (NKJV)

¹⁰ Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My righteous right hand.’

Do not lose hope.

Jeremiah 29:11(NLT)

¹¹ For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.

 

 

 

Our family does a fun little converstion starter sometimes at supper or at the end of the day.  The girls brought home the idea from http://campkesem.org/ during their “Cabin Chats” and it’s called WOW/POW/CHOW.  Perhaps you guys might like to try it in your own families.  Here’s mine from yesterday:

 

WOW{highlight(s) of the day}:  Light-hearted time with Joy trying on hats, scarves, and wigs,  a short brisk walk in the fresh air and sunshine with John and our dog Marley, feeling well when decorating the Christmas tree while listening to beautiful Christmas music, a nice snuggle with my Hannah Banana, and the spark of joy my Aeroponic/hydroponic Tower Garden loaded with pea pods and blossoms right now brings me.  I love watching veggies and flowers grow!

 

POW {hard thing(s) of the day}: I felt awful yesterday from chemo effects: exhausted, body/bone aches, hair shedding like crazy all day, and vomiting (thankfully yesterday was the first day on that one).

 

CHOW {favorite food(s) of the day}  We’ve been blessed with  scrump-dee-a-licious papayas from my friend’s tree (THX again, Nita!).  Because of the low WBC count and precautions I am taking to reduce bacterial exposure,  I soak produce with skin on in vinegar water then peel it,  mostly cooking produce now because of risk of infection but I enjoyed the papaya raw.  YUMMERS!

 

Let’s be watching for God’s Fingerprints today!  :0)

Paula

 

 

Never A Bad Hair Day Part Two

This is what my tub has looked like after my showers these past few days and I’m shedding hair all over the place it seems.  I’m sorry if these photos are too gross/TMI–somehow it helps to share my journey.  I may ask my family to help me with a buzz cut soon like we did last time because it is less distressing and more empowering (and less of a mess!) to take charge of the inevitable sometimes.  I’m still waiting a bit to see if I’m going to get to keep any significant amount of hair before a drastic buzz cut since my oncologist told me that weekly Taxol might possibly just “thin my hair out” rather than render me completely bald. My pillowcase is loaded with hair and I have some see-through spots to a shiny scalp this morning.

 

Today I got to thinking about a funny anecdote someone else came up with that I love and shared in my blog back in 2011 http://jpoliver.com/wordpress/archives/425 I just pulled up the link to my 9/23/2011 post and am copying and pasting my thoughts from back then below to share with you guys and for me to ponder and chew on again.

 I continue to be a “Work in Progress” through all this cancer stuff and the twists, turns, and bumps of life.  The process of surrendering and releasing all sorts of details to God besides my hair these days continues. The Lord is not finished with me or any of us yet!   May we be like soft, supple clay in our loving Potter’s Hands, yielded and still as He molds and shapes us and conforms us to the image of His Son through the tools of His choosing.  He is the One Who can bring beauty from ash heaps and joy after mourning (Isiah 61:3).

 

 

Never a Bad Hair Day 🙂

Posted on September 23, 2011 by Paula

“A woman with breast cancer, going through the rigors of chemo,  woke up one morning,
looked in the mirror, and noticed she had only three hairs left on her head.
‘Well,’ she said, ‘I think I’ll braid my hair today.’
So she did and she had a wonderful day.

The next day she woke up, looked in the mirror
and saw that she had only two hairs remaining on her head.
‘H-M-M,’ she said, ‘I think I’ll part my hair down the middle today.’
So she did and she had a grand day.

The next day she woke up, looked in the mirror and noticed
that she had only one lonely hair on her head, hanging on for dear life.
‘Well,’ she said, ‘Today I’m going to wear my hair in a pony tail.’
So she did, and she had a fun, fun day.

The next day she woke up, looked in the mirror and
noticed that there wasn’t a single hair on her head.
‘YAY!’ she exclaimed. ‘I don’t have to fix my hair today!’”

I got a good chuckle out of this funny, wise little story. 🙂

 My “take-away” and challenge to myself is to reflect on what attitude I am going to choose along this path God has me on. Here’s some I can think of for starters right now:

 

 I choose to have a grateful, happy heart that is based on the Word of God, not my circumstances.

 

I choose to enjoy every single day God has left for me on this earth, thanking Him for the lovely gifts He has for me along the way .

 

I choose to recognize those gifts, particularly those wrapped in packaging that make them not seem like good gifts but they really are.

 

I choose to remember that this earth is not my real Home, just a temporary one: Heaven is and it’s right around the corner even if I live to 100.

 

I choose to be soft and tender in God’s Hands: allowing Him to teach me all the beautiful lessons He has for me along the way .

 

I choose to be a blessing and to reach out to others.

 

I choose not to give in to self pity and a self centered life.

 

I choose not to be a miserable person, especially when I am feeling miserable.

 

I choose to deal with sin and mistakes in my life God’s way.

 

I choose to forgive others and myself.  Everybody messes up sometimes, just like me.

 

I choose to be a peace maker.

 

I choose to tell people how great and wonderful God always is no matter what.

 

I choose to cultivate laughter and humor.

 

I choose God above everything else.

 

 Father, please help me to make good choices.  I know I can only do this in Your strength.  I know how prone I am to wander and to grab stuff in my life back and even though it’s foolish and dumb to do that,  I still do it.  Please take over completely.  Please be in total charge of everything having to do with me and my life–I’m 100% Yours.

 

 Lord, every single good gift comes from You…

(From James 1:7) My ongoing  One Thousand Gifts   http://www.aholyexperience.com/ Gratefulness List:

 

277. The relief of again giving full control of my life over to God.  Help me to keep giving myself back to You, moment by moment, Lord!

278.  The funny, wise story of the lady with 3 hairs left and my take-away on the choices I desire to make and will make, in His strength, with Him in charge

279. Mom, Bets, and Heidi coming to visit next week!  Hooray!

280. He’s given me His peace.  My heart never needs to be troubled or afraid (John 14:27)

 

God’s beloved bald-headed Paula

 

“Peace I leave with you, My peace I give to you; not as the world gives do I give to you. 

Let not your heart be troubled, neither let it be afraid.” John 14:27

“Dear Every Cancer Patient I Ever Took Care Of”

 

The below is copied and pasted from https://herecomesthesun927.com/2016/11/14/dear-every-cancer-patient-i-ever-took-care-of-im-sorry-i-didnt-get-it/

(Thanks for passing this along to me, E.M.!)

 

Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

Posted on November 14, 2016

“Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

“This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

 

“I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it.

 

“I didn’t get how hard the waiting is. It’s literally the worst part. The diagnosis process takes forever. The different consults, the biopsies, the exams and procedures… and the scans. Ugh, the scans. You were going through the motions trying to stay positive- but at that point, you had no idea what you were dealing with and the unknown was terrifying. Knowing the cancer is there and knowing you’re not doing anything to treat is yet is an awful, helpless feeling. I’m sorry. I didn’t get it.

“I didn’t get how awkward it was to tell other people the news. You didn’t know what to say. They didn’t know what to say. No one knew what to say- but there was some relief when the word started to spread. It may have been overwhelming to reply to all the calls and messages- and to get used to others knowing such personal information, but this nasty secret you’d been keeping was finally out and your support system was growing. I’m sorry. I didn’t get it.

 

“I didn’t get how much you hung on to every word I said to you. You replayed it in your mind a hundred times. Did I really mean this or that… you wondered if you understood. You called me again to make sure. And maybe another time because your friend asked “well, what about _____”. You asked your other nurses to see if you got the same answer. Please know we are happy to take a million calls a day with the same questions until you can make sense of it. I’m sorry. I didn’t get it.

 

“I didn’t get how much you googled. I told you not to do it. You did it, a lot- and so did I. Searching for information, hope, stories like yours, reassurance. It was impossible not to. My new stance is to just know what a good source is when you google. I’ll help you learn to filter the information. And I promise to give you more information, because I know how much you crave it. It’s not realistic to think you will have the willpower to not search at all (at least it wasn’t for me). I’m sorry. I didn’t get it.

 

“I didn’t get what it felt like to get the sad looks all the time. Walking down the hall at work or seeing someone for the first time after finding out. You got the head tilt with a soft “how aaaare you?” You quickly got together your rehearsed “Doing pretty good, tired but hanging in there”generic response. Don’t get me wrong, I know you appreciated all the well wishes and concern- but it sure took a little while to get used to the pity. I’m sorry. I didn’t get it.

 

“I didn’t get what really goes on at all those “other appointments”. I knew what to tell you to expect at your oncology appointments- but all the different types of scans, radiation, operating room, procedural areas- I didn’t really know what went on behind the scenes there and what to tell you. I should’ve known more about the whole picture. I should’ve been able to warn you that there was an hour wait after a dose of medication before you could actually have a scan. I should’ve been able to tell you what you can and can’t eat or drink before a certain procedure or that some treatments require going every single day. I’m sorry. I didn’t get it.

 

“I didn’t get how weird it felt to be called “brave”. It’s a word that gets thrown around a lot, yeah it kind of made you feel good- but you still didn’t really understand why people would call you this. Sure you were getting through it fine (most days), but it’s not like you had a choice. I’m getting treatment because I have to- doesn’t really make me feel like much of a hero. I’m sorry. I didn’t get it.

 

“I didn’t get how crazy this makes you. Like you literally wondered if you had lost every working brain cell. Especially when dealing with side effects or other symptoms. You could’ve had every side effect in the book from chemo or none at all and you’d still wonder if it’s really working the way it’s supposed to. You may just have had a headache, or a common cold, or a sore joint- but you were never certain it wasn’t related to your cancer and always wondered if it was a sign of progression, even when it made no sense. I hope you didn’t feel dismissed when you called me to ask about it and I said not to worry. I’m sorry. I didn’t get it.

 

“I didn’t get why you were always suspicious. You couldn’t help but wonder if they all knew something you didn’t about your prognosis. We shared the percentages and stats with you – and that every cancer is different … but still- is there something more? Something they were protecting you from or just felt too bad to tell you? Logically, I know the answer to this but find myself with these feelings as well. I’m sorry. I didn’t get it.

 

“I didn’t get how confusing “options” really were. In some cases, there may be more than one choice. Whether this be physicians, medications, sequence of treatment, etc-  I would try my best to help you understand every angle, but more options many times just meant more confusion. You wanted to be involved in your own care- but the stress of too many options was sometimes too much. You begged me for my input and to tell you what I would do if it were me. I hated that question, but I hear you now. I’m sorry. I didn’t get it.

 

“I didn’t get how hard it is to accept help. Especially the moms. This just wasn’t something you’re used to doing- but you needed it. You felt shy about admitting that you’re not sure you could’ve gotten through the first few months without the extra food, gift cards, support, and other help you were given. You felt humbled at the outpouring and just only hoped you would’ve done the same for them. You still wonder if you said thank you enough or if you missed an opportunity to give back. I’m sorry. I didn’t get it.

 

“I didn’t get the mood swings. One day you felt confident that you’d completely beat this with no problem; you felt like you could take over the world. And for no good reason, the next day you were just convinced yours was going to be one of those sad stories people tell their friends about. The moods snuck up on you without warning. Literally anything could’ve been a trigger. I’m sorry. I didn’t get it.

 

“I didn’t get that when you said you were tired, you really meant so much more. Sure there are words like exhaustion and extreme fatigue- but there should really be a separate word just for cancer patients, because it’s crippling. Really. Some days you really wondered how you’d trudge forward. I’m sorry. I didn’t get it.

 

“I didn’t get how much time this really takes away from your life. I always used phrases like “Cancer is like getting another full time job” or “Life doesn’t stop for cancer” when trying to prep you for what you were about to embark on. But now they just seem like corny catch phrases. It completely took over, you had to stop doing things you love, you had to cancel plans, you had to miss out on things that were important to you. It just wasn’t in any plans- and that alone took a lot of mourning. I’m sorry. I didn’t get it.

 

“I didn’t get how strange it was to see your body changing so quickly. You stood there and looked at yourself in disbelief in the mirror. Maybe it was extreme swelling, maybe it was scars, maybe it was hair loss, maybe it was pounds melting away when you do everything in your power to eat as much as you can. It’s hard- your appearance is tied more closely to your identity than you’d like to admit and these were constant reminders of what you were up against. You just wanted to feel like yourself. I’m sorry. I didn’t get it.

 

“I didn’t get that it hurts to be left out. People didn’t invite you to things anymore. People felt like they can’t complain or vent about every day annoyances to you anymore. People acted differently towards you and it hurt a bit. You certainly didn’t blame them- you had even done the same to others when traumatic life events happened—and no you didn’t want to go out for drinks anyway because you don’t feel good. But you needed normalcy. I’m sorry. I didn’t get it.

 

“I didn’t get how much you worried about your kids. For this, I’m the most regretful. I should’ve talked to you more about them- and not just in terms of lifting restrictions or germs. You worried about how this was going to affect them. You worried about not being able to keep up with them or care for them properly on your bad days. You worried they’d be scarred and confused. You worried about leaving them. I’m sorry. I didn’t get it

 

“I didn’t get the guilt you felt. Especially to those who are married. You thought about how unfair it was that your spouse had to pick up so much slack- mentally to help keep you focused and calm, and physically at home pulling double weight with never-ending every day chores. You understood that everyone promises “in sickness and in health” when you get married- but you still felt like they didn’t deserve this. You felt thankful when your spouse would say “go get some rest and I’ll take care of the kids” but your heart hurt overhearing them play in the other room away from you- wondering if that was a glimpse into their future that didn’t have you in it. I’m sorry. I didn’t get it.

 

“I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something- it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized – it is not a phase. Yes, there are phases- the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop. I hear that gets better- time will tell. And time is precious. I’m sorry. I didn’t get it.

 

“I do have to admit; I’ve probably had it a little easier than you to start off. I know the language, I know all the right people, I work where I get treatment so sure- it’s more convenient. I watched so many of you march through this terrible nightmare with a brave face and determination- without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you. Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great- it’s good for the oncology nurses’ soul. Even though healthcare workers don’t really know what it’s like to be you (well, us) it’s ok. Nobody does. I just hope that I was still able to give you a little guidance and strength to help you get through your cancer treatment. Even if I didn’t get it.

 

Love,
Lindsay, Oncology RN”

 

Article about this author:

Oncology Nurse Diagnosed with Cancer Writes Apology Letter to Patients: ‘I’m Sorry, I Didn’t Get It’