It's Tuesday

First Tuesday I missed work after chemo.  I am really hurting so I'm glad I'm home.  I slept most of the day away (again).  Mom came over and made homemade chicken soup, yummy.  The good news is I didn't get that metallic taste in my mouth this time around. 

I'm heading for work tomorrow.  Matt wants to drive and I have no problem with that! My legs aren't working so great. 

Jasmine got a job today! In today's economy, it has been difficult for so many. She is very excited and we wish her the best of luck!

Casey had her first emergency call today.  A husband took his own life.  It is sad when someone feels so desperate that they take this final action.  All life has value.  I know you are valued each and every day.  Our prayers are with that family and with my daughter as she begins this type of journey in life.  God is calling her.

Is He calling you?

Day 4 - After Chemo #3

I'm beginning to hit my low again, I can feel the tears well up inside.  This time, it has to do with changes in my life.  Generally, I can handle changes ~ open my arms and embrace them? ~ not without a lot of questions first.  Plan A, Plan B, what about this, what about that.... What I have to rest assure is that God will take care of me whatever changes come my way.  I know this is cryptic, but since it is a public site, I'm going to leave it like that.

Just got done with another nose bleed.  yuck

Yesterday, the bone crunching was intense.  It's like my knee caps were on backwards.  Reminds me of an alien movie I saw where the alien's legs bent like a grasshopper.  Sort of like how I feel and walk.  The cane I bought last week is helping.  A very cool cane that collapses and fits in my purse.  It gets me up and down the stairs too. 

I didn't go to work today and will probably take Tuesday off as well.  Last time, I wish I had ... so I'm basing it off that. 



Life seems SURREAL.  Pinch me .... am I really here?

Day 2 - after Chemo #3

I slept most of Saturday away.  Trying to keep the pain under control, which means that I fall asleep a lot taking pain medication.  That's okay. Sleep is helping my body recover too.

Starting the coumadin again .... Just 1 pill! then 1-1/2.  I just took 7 different pills, so you can see how confusing this can be.

My sister/husband made dinner for us tonight.  It was fabulous and I could taste it! I'm spoiled rotten.

I'm so behind on thank you cards and letter writing.  I want to send a note to my Aunt Midge this weekend.  I use to be an excellent pen-pal (before computers).  We moved so many times during my school years and I loved to write my friends.  It is a lost art.  With quick e-mails and instant texting, the rich flavor of words have disappeared.  I use to write short stories and use descriptive words.... I liked the poem I wrote of my sister.  Visual.

Pathway

May God Bless you today ~

The Day After - Chemo #3

Last night after getting ready for bed, I made the decision not to go into work today.  The first Friday I missed after chemo.  I was just too exhausted to think about getting up early and putting in a full day.  I'm ever so glad I made that decision.

I slept on & off most of the day with the company of all my animals (boy, they can sleep A LOT!)  Watched a John Wayne comedy (yes, he made a comedy) called McClintock. Loved it!

Took off for the cancer center for my shot of Neulasta. We braved the high winds today and I wore my leopard hat that is snug fitting ... so windy my hair would have blown off my scalp, if I had any!  The nurse was "petting" my hat because it's soft as a kitty.  Nurse Bev, from yesterday, left a magazine for me of photographs of extreme sports.  Awesome photos from exotic places .... oh, how I wish I could go to places and capture everything breathtaking.  Anyway, (back to the shot) .... nurse had me hold the syringe to warm it up while she was getting things ready.  It was cold and she said it burns going in if the fluid is cold.  Did my best to warm it up!  Easy-peazy, no pain going in!  Continue taking the Clairton to ease the bone and muscle pain that is suppose to last 3-4 days.  Hoping to feel like a new woman!

We stopped by mom's to pick up dinner she made for us.  It was good to visit .... as I haven't seen her much since all this started.  Little sister is picking her up next weekend and taking her south for a few months.  She is so excited and I know that it is definitely time for her to get out of the 4 walls and do something different and in warmer climate. 

Debbie sent over this video that is very worthy of sharing.  Hope it moves you

It's A Good Day

Teri reading her book

Teri & I arrived on time for the THIRD round of cocktails.  I was hoping for the corner suite like last time .... guess what! I actually have my own room this time! With a door, a sink, and a TV.  How awesome is that, lol ~

Last week during my follow up, my numbers were really low.  Nurse Bev explained that treatment could be delayed if my numbers didn't come up.  So, we had our fingers crossed, said a little prayer and waited.  John, intern from Malone, is on site learning today.  Of course I had to mention my daughter who is graduating from Malone with a masters, where she is and what she is doing, ya-da-ya-da-ya-da. 

Any way, I got all prepped with the IV in the port.

Christina (pharmacist) came in to discuss my pain levels and side effects since the last treatment.  She also explained more about the Neulasta and gave me Clairiton to help with the side effects from it.  More bone pain .... just great :(  My shot is 4:00 Friday and then every time after chemo to boost my white blood cells.

Nurse Bev and John came in doing the happy dance with jazz hands! My levels are good! My liver and kidneys are up for it as well.  Everything is a go!


Signing off for now to get ready for my cocktails ~










It's almost 7pm now and I thought I would write a quick update and then hit the hay for work tomorrow.

My counts did come back at good enough levels to go ahead with chemo today.  But, I really messed up on the coumadin.  The 1-1/2 pill was every other day ... I was taking it every day.  The INR test came back 4.75 - CRITICAL PANIC HIGH.  Normal level is between 2.0-3.0.  oops.  Doc Esther explained again how to take it and I was confused.  Even the nurse was somewhat confused.  But we got it.  Don't take it until Saturday.  Got it.  Then on Saturday take 1 pill. On Sunday, 1-1/2 Pill and then alternate.  I really thought she said 1-1/2 pill every day...plus it wasn't written down at her office. 

I fell asleep right away again from the meds.  Everything went pretty smooth.  I took my dance partner (IV stand) and gave out Purell to my neighbors.  That is always fun to do.

We got done at 3:30 today and made our way to Subway. And, I got spinach on my sub to help lower my coumadin numbers.

Well, my brain isn't working very well so I'll sign off for now.  Good night :)

Shot in the Arm

This news story came on today about Tom and Laura who own a coffee and tea shop in Independence, OH.  Their story is heartwarming and if you live in the area, stop by on Wednesday, Feb 29 between 5:00pm-7:30pm.  They are the only locally owned coffee shop in the area.

Take a listen to their story

Brielle's

@briellescoffee

Brielle's Coffee & Tea Room Muffins, Cookies, Scones baked fresh Lunch Entrees, Catering, Box Lunches, gatherings and meetings. (216) 642-9292

6523 RT 21 Independence     

Methotrexate Shortage has Ceased!

Response from the Critical Shortage Post

Dear Carol,
We are pleased to share with you that this morning, the FDA reported that the preservative-free methotrexate shortage has ceased.

Based on quick action by numerous pharmaceutical companies, and thanks to your calls and letters, preservative-free methotrexate is being produced and shipped to hospitals and treatment centers in need. Many companies who were not major producers of the drug, or in some cases, were not making the preservative-free version at all, have increased or begun production in order to stop the shortage. The FDA believes that based on new production schedules, the shortage will be completely resolved.
CureSearch, along with the children's cancer community, continues to work with the FDA and Congress to ensure that in the future, such shortages do not occur at all.

Thank you for making your voice heard. You truly made a difference in ensuring that treatment continues, uninterrupted, for children with ALL and osteosarcoma.
Sincerely,
                    Erica Neufeld
                    Vice President of Communications and Advocacy
Erica.Neufeld@CureSearch.org
(240) 235-2201

R.I.P.

The White's Farm - God's Country

We received the news today that our wonderful friend, Mr. White, went home to be with the Lord today.  He fought a courageous battle with cancer but is a testimony of miracles.

Dear Father, I ask that you be with the family right now.  Guide them through this journey of loss.  I pray that Jim's transition to your arms is GLORIOUS where he no longer suffers and is forever at peace. 

One day, Lord, we will have a reunion that will bring down the barn roof! When we will worship YOU and praise YOU for all eternity! 

We have not really lost him, for we know exactly where he is!

More cocktails a'coming Thursday!

I'm SOOOO excited for my next treatment Thursday! Why, you might ask?  Because I'm SOOOO tired! I plan to sleep most of the day away.  PLUS, it will be the half-way point of my chemo cocktail. 

I'll find out what time Friday that I will get the shot to boost my white blood cell count.  Looking forward to that too as I feel so drained.

Family is gearing up for meals during my bad days.  Don't be jealous ... 'cause they are EXCELLENT cooks!  Our Family Recipes are shared on blogspot.

Have a blessed day!

The Love of Caregivers

Nikki told me about Martina McBride's song about caregivers.  She mentioned how it felt to be a caregiver, because she was for her husband.  This video is amazing, powerful, and true. 

I'm so very thankful ~ every day ~ for the caregivers in my life.  I've never wanted to be a burden to anyone. It is very humbling to ask for help....but in most cases, I don't have to ask.  A helping hand is always there. 

The hugs I get are powerful as well.  I get them daily from many sources.  Sometimes, they come unexpectedly from people I barely know.

I can tell you that to me, knowing that I am not alone makes all the difference in the world.  To know that people are praying for me.  To know that people care ~ amazing.

So thank you.   Please listen to this song and to those who feel this same amazement at the love and support that they received.

Link to Caregivers and more articles

TGIF ~

Thankful that today is Friday.  I didn't feel so great today.  My own fault.... Matt drove me to work today and since I was in pain, I decided to take a pain pill.  Breakfast was hours earlier and taking that tiny pill on an empty stomach made me nauseous, dizzy and way off.  Nope, won't do that again.

We had a department luncheon and Debbie was kind enough to get me a bowl of soup.  I sat at my desk for a bit to let it warm my tummy and get me back on track.  Finally, I joined the group in the other room and enjoyed the conversation.  Then, I felt something strange....touched my nose and had blood on my fingers.  Ever so discreetly, I left the room to attend to my bloody nose.  Jeez .... I noticed a bruise on my forearm and can't remember how I got that. Coumadin and cocktails.... Kinda felt like I was falling apart today.

Matt picked me up at 4:30 and I was relieved to go home. Did I mention how relieved I am it's Friday?

On other news, Jasmine moved today a little bit closer to home.  I met the family she is living with and they seem very nice.  We have plans to get Jasmine's license and then make an appointment to get her wisdom teeth removed.  She has been having quite a few headaches and it is terrible if an infection starts in the gums as the poison can travel straight to the heart. 

My friend, Marylee, is leaving for a missions trip to Haiti.  I am so overjoyed for her as this is her heart's desire and she has made several trips there already.  She has a real love for them.  I'm anxious to hear all the wonderful news she will bring back with her....and PICTURES....I am a shutterbug and I love pictures!

Looking Glass Falls

Gonna take it easy this weekend.  May you have a beautiful day ~

Test Results for #2 Session

Today was my follow-up appointment with my oncologist.  Doc Esther came back from vacation and was running about an hour behind schedule.  Don't you just hate it when you have to wait at doctor appointments?  But, I try to relax and not get overly anxious. 

My INR for my coumidine is 1.7 (needs to be between 2-3).  So, she wants me to go up 1/2 a pill (1-1/2 pill per day).

My white blood cells are low.  So, I will need to get a shot of Neulasta 24 hours after my chemo (Friday).  I'm not liking the side effect list .... man, oh man.  Hoping insurance pays a good chunk of it.

My blood pressure was good :)

I asked her to write a 90 day script for my nausea medicine.  She had only been writing them for 15 pills at a time and it cost $38.50.  I explained our discount plan that it would be $15 for 90 day supply.  I dropped off the script on the way to work only to discover that it had been written for 30 days for $232 dollars.  Oh boy.... it took lots of phone calls to get that all squared away.  Mission accomplished.

Tired ....

It's been nice having Jasmine spend the night yesterday and today.  She made chilie for dinner and has been helping around the house.  I'm glad she has been able to lend a helping hand!

Good night ~

South Carolina

That Fogginess

Duct Tape is Wonderful

So there IS such a thing as Chemo Brain !!! I knew it just wasn't ME....seriously?!  Pre-chemo, I use to say I had "some-timerz", not Alzheimer's (hope I'm not offending anyone).

The article states
Here are just a few examples of what patients call chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

I can certainly attest to it!

I see my oncologist in the morning and my blog helps me keep things in order.  Like most people, I make lists and try to remember it all.

Day-to-day coping

Experts have been studying memory for a long time. There are many resources that might help you sharpen your mental abilities and manage the problems that may come with chemo brain. Some things that you can do are:

• Use a detailed daily planner. Keeping everything in one place makes it easier to find the reminders you may need. Serious planner users keep track of their appointments and schedules, “to do” lists, important dates, websites, phone numbers and addresses, meeting notes, and even movies they’d like to see or books they’d like to read.
• Exercise your brain. Take a class, do word puzzles, or learn a new language.
• Get enough rest and sleep.
• Exercise your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
• Eat your veggies. Studies have shown that eating more vegetables is linked to keeping brain power as people age.
• Set up and follow routines. Pick a certain place for commonly lost objects and put them there each time. Try to keep the same daily schedule.
• Don’t try to multi-task. Focus on one thing at a time.
• Ask for help when you need it. Friends and loved ones can help with daily tasks to cut down on distractions and help you save mental energy.
• Track your memory problems. Keep a diary of when you notice problems and the events that are going on at the time. Medicines taken, time of day, and the situation you are in might help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare. You’ll know to avoid planning important conversations or appointments during those times. This will also be useful when you talk with your doctor about these problems.
• Try not to focus so much on how much these symptoms bother you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can’t control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.

Critical Shortage of Medication

Critical Shortage of Medication for ALL: You Can Help

There is currently a significant shortage of the chemotherapy medication preservative-free methotrexate in the United States. This drug is critical to the treatment of children with Acute Lymphoblastic Leukemia (ALL). Unless production of preservative-free methotrexate increases, hospitals will run out of the medication completely in the days and weeks ahead.

I've been reading about shortages in chemo drugs.  Put a face to the need and meet this dear child . Also, read Lil Blue Boo.

Take a moment from your precious time to help save precious time for cancer patients. Here is what you can do

Happy Valentine's Day

What is Love?

⁴ Love is patient, love is kind. It does not envy, it does not boast, it is not proud.
⁵ It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs.
⁶ Love does not delight in evil but rejoices with the truth.
⁷ It always protects, always trusts, always hopes, always perseveres.
⁸ Love never fails

1 Corinthians 13:4-8

It's a Matter of Life & Death

This canzer-thingy sucks. It's mean and it does kill.  How long is it going to take before someone finds a cure that is 100% effective?  I followed Lanie's Blog .... and then reality hit once again.

I also follow Lil Blue Boo ... Ashley is amazing and celebrates "Choosing Joy" every day. I can't even begin to compare our diagnosis or treatments (nor should I), but to say that she is a very strong individual who kicks butt.

This disease creeps into our lives and changes us forever. 

If we are blessed to reach remission, we are still looking over our shoulder and wondering if it will return. (as in other blogs I follow listed on the right side of my blog)

REALITY CHECK

A wonderful friend of ours is in hospice.  He is in his final stages of his home-going. We all have an ending story. A beginning, a middle and an end.   I can't imagine facing death without God .... it would be too lonely, too depressing.  I'm thankful that my eyes are wide open now about life in general.  I wasted much of it with stupid stuff.  Now, I get a chance to make things right in many areas of my life.

Colorado

Don't wait to get a diagnosis like cancer ...

make life altering changes

FOR THE BETTER

right now ~

Pink Glove Dance

Crop Circles

Yesterday after my shower, the stubble on my head looked like crop circles.  No, really, it's true! Most of it was laying down, disconnected.  What a sight! I think I could have just stayed under the shower nozzle and wait for it to all wash out.  Instead, another session with Matt.  This time with lather and a Gillette Mach 3 razor.  I sat on the edge of the tub and let him take his time on my scalp.

Bald and beautiful!  Well, don't know about the beautiful part though, lol.

Saturday, I paid bills and lounged around. 
Sunday, I plan to clean the kitchen and organize some of my piles.
Not too productive, just kinda taking it easy.

The winter snow hit us this weekend in beautiful Ohio. 

May you be a blessing to someone today!

My Soul is Restored

Above Me

A wonderful friend of mine from my school days in North Carolina has been a great encourager.  He said that through prayer and support that "all bases are covered, but don't forget short stop (your BIBLE)".  He reminded me of Psalm 23, which our family is very familiar with as we have read it at many of our funerals.  But reading it again, brings even more assurance that right here and right now, God's words sustain me.  His promises to us are true.



Psalms 23:1-6(NKJV)
The Lord is my shepherd; I shall not want.
He makes me to lie down in green pastures; He leads me beside the still waters.
He restores my soul; He leads me in the paths of righteousness For His name’s sake.
Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.
You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over.
Surely goodness and mercy shall follow me All the days of my life; And I will dwell in the house of the Lord Forever.


As I listened to a recent sermon, the subject was loving God with all your heart, soul, and mind.  What is the definition of soul?  It is your "personhood"...what makes you, "you"... our "character". 

This journey has many valleys.  I can tell you that right now, my soul (my personhood) has been restored.

Thank you Jesus ~

The Pickle Jar

A forwarded e-mail worthy of sharing ~

The pickle jar, as far back as I can remember, sat on the floor beside the dresser in my parents' bedroom.  When he got ready for bed, Dad would empty his pockets and toss his coins into the jar

Sleep is Good

Thank you for all the prayers and messages.  I have been in bed by 7:30 each night, so haven't been on top of messages.  It makes my heart smile to read them.

Today, the side effects have lessened their grip.  It is Day 7 post chemo and I'm trying to think of foods that won't make me nauseous.  The vitamin k in leafy greens is a "no-no" because of the coumidine....salads, broccoli, spinach.  I can have it, but if I do, it has to be all the time or none at all because it will spike my blood tests. 

Sleep is good and I can tell it is helping my body recover from the chemo.  I'm going to make it a point to get more of it after treatments.

I'm thinking clearer today.  The skies are bluer today.  God is still holding me.

My Pity Party

The last few days have been kinda rough.  I missed all day Monday ... managed to work Tuesday 10:15-4:00.  I have no idea how I drove to work and back. I don't think I'm going to try that again either.  I'll just have to book both Monday & Tuesday after chemo that I'm going to be off work. 

Everything inside of me is getting killed.  I'm feeling it.

I got home yesterday and went straight to bed.  Matt came home from school around 8pm and was distraught that I hadn't taken my medicine or eaten.  Getting hard to eat.  Not hungry and that metallic taste is back.  So, looks like I'll need a babysitter on Tuesday after.

I'm feeling sorry for myself and I don't want to.  I really don't want to do this anymore.  But I have to.

*sigh*

To Believe

Jackie Evancho
To Believe

Express Yourself

When the time comes, I will learn how to make eyebrows.  I had NO IDEA this is how to do it!

Laughter Heals

We've all heard that laughter heals.  I see no reason to doubt it!  Hope you get a kick out of this!

Belly laughs are wonderful for the soul and  Laughter heals

Silly Kitties

Just another Sunday

Just a quick note to let you know that I'm hanging in there .... although very tired and my bones hurt like last time.  Keeping the pain at bay as much as possible.  Decided to rest one more day and go back to work Tuesday. 

Peace be with you ~

Sleepy Time ~

I've lost some hours somewhere .... Last I remember, went to work Friday.  Okay day, but got tired before lunch time.  Matt picked me up around 4:00 (glad I wasn't driving) and we went to Sam's club looking for printer ink.  (thank goodness for scooters) They didn't have it so our money went on other "stuff".  Almonds for one.  The nutritionist on my "team" called me to talk about my numbers and even though they looked good, was encouraging me to get more protein and iron to promote healing.  nuts, yogurt, cheese, meats, etc. And, if I'm not hungry for a full meal, snack on trail mix.  Got that too.

Stopped at my sister's house to pick up our yummy dinner. Ate most of it (saving the rest for later) and crashed about 7:30pm on the couch.  I woke up about 4:00am, took my first pain pill and went to bed.  I've been sleeping most of this day away too.  No nausea, pain is under control.  Don't want to walk much though as I can feel it in my feet.

Last time, everything hit me hard on Sunday.  Not sure what to expect, but I'm READY FOR IT and will kick it in the butt this time!

How are You being Treated today?

I hope you are being treated well today.  I am! Got my cocktail, recliner, laptop, penthouse suite, window overlooking the countryside (i mean parking lot) ... All last year, I kept saying I was going on a sabbatical.  Even wrote it on the white board at work.  Look~ I can certainly consider this my sabbatical ... why not? There sure is time to reflect and definitely re-align areas of life.

Matt brought me to the treatment center and helped me get settled in.  Adam (brother-in-law) followed us in ... Matt got to stay for awhile and then took off for school.  He already missed his first class.  It was great having that 1 on 1 conversion with Adam.  We talk about life, relationships and God. 

The usual blood work was done before treatment can start.  It is important to make sure my body is on track before chemo drugs saturate my system.  She said all my levels are excellent. Today, I have Nurse Dawn and I REALLY like her.  I think it is wonderful when the person who is caring for you actually cares.  Know what I mean jellybean? My blood level for the cumidine is 2.86 (should be between 2-3). 

My first drug was Herceptin .... this time, it was only for 30 minutes instead of the initial 90 minutes on the last treatment.  It was in a millisecond that my eyelids felt heavy from the benedryl.  Got a dose of steroids too and other stuff.  Not sure I made any sense during my convo with Adam .... although I'm positive he followed my line of thinking.

Once the tox began, the icebags came on too ... both hands and feet (therefore no typing). This drip is for 3 hours.  About lunchtime, Adam took off and I got a sandwich and mac & cheese. 

I tried to check my messages and then my eyelids went down again.  zzzzzzz

I woke up right before 2:00 and Nurse Dawn was putting on the 3rd bag.  Whaaa?? She said I should be done by 2:30!  Way earlier than I thought, so I made that quick call to Marylee for my transportation.  She is on her way :)

Wish I would have brought my camera.  I'm in the corner penthouse suite.  This section is twice as big as the one I had last time.  Got a huge window that my recliner faces.  Even though it is cloudy, I can find solace and beauty as my eyes roam the canvas.  (I REALLY need to have another photo shoot soon. I'm just itching to snap away)

Well, I'll come back to this post and fix any errors and add to it! I'm beeping, ready to start packing up!

8:15pm - Matt is home from school.  I just finished eating "most" of my dinner.  So far, no side effects and I hope to go to work Friday.  Last time, the stuff hit Sunday and lasted a few days.  Counting on the new pain meds to help me get through it.

Thank you for hugging me, thinking of me, praying for me, encouraging me .... hmmm, sure is a lot of "me" in this statement.  It's not all about me.  Your walk in this life is just as eventful.  Be sure you allow me the opportunity to hug you, think of you, pray for you, encourage you.  ok? THAT'S what makes my heart happy!

A Couple of Photos

I got most of my stuff done tonight as I prepare to be "out-of-sorts" for a few days.  My goodie bag for tomorrow is ready and I'll be taking my laptop to keep in touch with the outside world.

There has been some requests to share photos of my beautiful round head. Here goes!

Sorry about the quality ... can't use flash when pointing the camera at a mirror!

Self Portrait

I like the scarves better than the hats and wig.  Finding fabulous ways to tie them. 

Gypsy Woman

Rocker Chick

I have no idea what I'm doing!  Last time I posed like this, it looked like I had arthritis ... lol

My Knight in Shining Armor

My brave husband shaved my head tonight.  Even though he didn't want to, he picked up the electric razor and did what I asked.  As my daughter said, I'm leaving my DNA all over the place and I had enough.   He was gentle and kind.  Since it was just the two of us, no pictures were done to document the event.  Perhaps I will be brave enough to share my bare head, perhaps I won't.  We didn't do anything creative, like shave designs or a mohawk ... nothing fun or exciting. 

I'm wearing a scarf tonight to get use to the feel. After wearing a hat all day, with my dead hair underneath, I absolutely pulled it off my head as soon as I got home from work. It was itchy, hot and bothersome. I tried on the borrowed wig tonight and need to get it fitted before I wear it. 

Me & my windshield wiper eyebrows

Mom was right, my head is perfectly round.  (she mentioned that I had a nice round head as a baby)

My hair will grow back.

And this canzer-thingy will not define me.

Neither will what I look like.


My knight in shining armor wrote me this poem when we were engaged. He tells me several times a day just how much he loves me ~

You Are

You are the Passion of my Romance and the Pillar of my Support

You calm me in the Storms of my Days

You smooth away my Coarseness

You run by my side and put me in Importance

You bring Surety to my Doubts

And bring Clarity when things seem Confused

You are the Green Pastures that He has led me to

You are my Palace which stands upon the Rock our Lord

You are my Jewel that is shined upon by the Light our Lord

You are my confidant, my best friend, my soulmate,

And I pray for the day that You are my Wife.

                   I Love You Carol Lynn Landon

Learning How to Tie Scarves

Shopping

Expressing Myself

This weekend went REALLY fast! Today, Christie, mom & I went to lunch, movie and shopping.  We laughed at "One for the Money" and bought more hats and scarfs.  I hated trying them on, as I was afraid of leaving bits of my hair in them (sorry folks). 

Christie brought over a razor for me...just not sure when I will be doing it, but know that it will be in the next few days.  My head feels weird.  It's like I hit the the back of my head on pavement. Or like I've been wearing a helmet all day and just took it off...that heavy feeling and my hair isn't connected to my scalp.

Matt's getting freaked out every time I show him a fist full of hair.  I think its kinda funny (not ha-ha funny, but strange funny).  When I wash my face tonight, I wonder if I'm going to wash my eyebrows off.  Now, that is what is STRANGE.  How are you going to know my expression? At least with a hat or wig, I look half way normal .... but, no eyebrows?  Oh, draw them on?  I'm the person who would touch my face and have it smeared all up on my forehead. 

My kids already make fun of my "windshield wiper" eyebrows.  Casey has a nice arch, Jasmine is working on hers too. 









Anyway, just wanted to vent a little on that topic.  Some day, this will all end and my hair will grow again.  Those who love me will still love me.

And the perk? I don't have razor stubble on my legs.  Smooooooth.....

Nutrients

I have been following Lil Blue Boo. Her blog is very creative and informative. Please read this post on Nutrients and incorporate it into your life.

http://www.lilblueboo.com/2012/01/a-lecture-from-dr-mom.html

It's Begun

A wonderful warm shower this morning ... and a fist full of hair.

Lookin' a little Junkie

The Gorge

This morning, I had my first INR Blood Test which measured 1.8.  Doc said I'm right on target (needs to be between 2-3).  She said I don't have to take the remainder of the shots (Framine) as the blood thinners are doing what it needs to do.  There are 2 shots left, which she wants me to save in case my numbers get low again.  I look like a "junkie" on my belly as the needle marks are leaving bruises.

She wants another test next Friday and then every 2 weeks.  She asked me if I was up to collecting my own numbers and adjusting my Coumidine accordingly.  Sure, why not?  I just call in for the results and if I'm unsure, I'll ask.  Taking 5mg now....either add to it or take it every other day, etc. 

I also asked to have them at the "satellite" medical center closer to work and she said yes.  It's getting old going downtown already!

Today is a good day.  Already dreading next Thursday, but I'm trying to just focus on today ... in the moment .... right?!

Matt came home from school last night very sick.  He doesn't want to spread his germs, so has taken precautions as much as possible.  Bummer :(

IT'S FRIDAY!  May your day be as awesome as you are!

You are Beautiful

Oncotype DX Revisited

Blue Ridge Parkway

During my follow-up appointment with Doc Esther, I mentioned that the surgeon had ordered the Oncotype DX test. (see post "The Day After - Jan 13") I had agreed to the test in a phone call with the agency and asked Doc if the results would make a difference in my treatments.  She said that I tested positive for all 3 areas that matter and the test would not provide anything new.  Doc recommended cancelling the order.  Okay, so it cost $4,100 ... I have no problems cancelling if the information is redundant.  Even tho they said I qualified for financial aid, I didn't have that in writing.  Makes me leary ~

I called to first find out if the test was already completed and therefore too late to cancel.  It would be complete within 24 hours and if I wanted to cancel it, my oncologist had to make the call.  Well, I'm the one who has to pay for it, why can't I be the one to cancel it? 

This morning, the Doc's office took care of it.  THANKFULLY.

Lesson learned - remember that there is a WHOLE lot of people on your "team".  Make sure the right hand knows what the left hand is doing.  It didn't dawn on me that my surgeon ordered a test to decide what the best treatment is .... get it?  The medical oncologist is the one who decides the treatment.  Light bulb!

All's well that ends well ~

PS  I feel good today.  :)

No Pressure Here

I do believe the blood thinner is working! My arm does not hurt as bad and the pressure seems to be easing.  Matt gave me the shot in my belly this morning and did a fabulous job.  4 more to go!

More good news .... I have my taste buds back! Yeah!  Hubby made steak for dinner tonight and I could actually taste it.

He drove me to/from work today as I wasn't sure how shaky I was gonna be. 

Sis' Backyard

Life is good ~ Isn't it?

I feel free as a bird.

Elf-like Earrings

A few years ago, I picked up these earrings at an art expo.  Aren't they way cool?  I didn't wear them much because of my long hair, but now....

Matt took this picture Jan 21. Just showing off my short cut.  A very different look for me.

Somebody Just Shoot Me ~ Would ya?

My hospital room was a private room and I was certainly grateful for that.  It's been awhile since I've been overnight in the hospital.  All the nurses were great, no problem there.  I tried to fall asleep by 11:00, but as tired as I was, struggled.  My arm was pounding and it was difficult getting comfortable. About 2:30, I asked Nurse Ashley for the sleeping pill she had on order.  I think it worked by 4:00.  I got up between 6-7am (I think) and got myself ready to go home.

Matt arrived about 8:30am to learn how to give me a shot.  He has experience with a diabetic, so it set my mind at ease.  We had to first wait for Doc Esther to do her rounds and to provide the prescriptions.  When I saw her, she said that I would need to take blood thinners for at least 3 months if not for the whole duration of chemotherapy :( 

I asked her how many blood clots and she said "multiple". My arm experienced trauma from the port. (anybody see pictures of that?!)  Okay, so the port was put in Jan 4. My first chemo was Jan 12. And now my follow up was Jan 23.  Besides calling the doc's office last week, there were a few times that she did see my arm AND I did give her photos when I saw her Jan 12.  (the ones you see in my earlier post).  I told her that I was glad she listened to me and that she ordered the ultrasound.  I hope I was letting her know that "hey, I know my body and it was telling me it was off.  Next time, listen to me clearer".  How about this....next time I speak LOUDER.  In her own words, she told me to get bitchier. For those who know me, not quite my style....but this is one thing that you don't have to tell me twice.

After she left, we had to wait for the pharmacy to bring the kit and show us how to use it.  We waited and waited.  Then, we were given the script to pick it up at CVS.  The pharmacist called it in for price and the Lovenox was $1,000.  No can do.  Give me something else or forget it.  So then we waited more hours as they determined that Fragmin could be an alternative.  But, guess what, still expensive. So, the social worker came in next to see if we qualify for financial aid.  But do you know how long that takes?  I'll need my next shot at 9pm.   Feel like I'm behind the eight ball.

She came back in with the offer that they may have some "in reserve".  If so, we could make arrangements to pick it up.  By 12:30, we were heading back to the McDowell center to pick up the needed syringes and God has blessed us .... free!  PLUS instead of twice a day, I only need 1 shot per day. I like that!

I would say "somebody just shoot me!"  And it looks like it will be possible.

Home by 1pm, lunch in my belly.  A quick note to catch everyone up. And a thank you to all those that cared for me Ashley, Gea, the social workers.

Colorado

As I was at the discharge desk, I met a beautiful woman who had just lost her mom 5 months ago to breast cancer.  I understand her sadness.  Her mom was her best friend.  I'm glad that my heart and mind was open to receive her (and not still inside my own drama).  I plan to visit her from time to time just to say hi and to keep her in my daily prayers.

Now for some rest ~

First Follow-up Post Chemo & Hospital Stay

Very long day....but now that I am finally settled in my hospital bed (10:25pm), I'll try to recount the events of today.

My appointment with Doc Esther was at 1pm today.  My blood count (napir) was great and I got the opportunity to ask her a lot of questions.

First on the list was my port and the fact that I had deep blue veins showing through my skin.  It was still tender and sore.  Once she examined me, she decided to have an ultrasound done to check for blood clots.  Her assistant got it set up for 4:00 today and the work order said "Hold patient".  So, I wasn't going anywhere until the test was read and my doctor reviewed it.  So, I waited in the waiting room (good name to call the room) until I got antsy around 5:20p and asked them if I could go home.  The receptionist said my doctor is calling me on the hallway phone.  Doc Esther said that there were blood clots and that she wanted me to report to admitting in the main hospital.  Whaaa???? I wasn't ready for that! No overnight bag....what about my car?.....what about my husband?  (you should call him, she said).....my head is swimming (I know that, dear, but you just need to go to the admitting desk and they will take care of you).

I called Matt to tell him and he quickly made arrangements to get to the hospital.  Jasmine was with him as she was coming over for dinner tonight.  My brother-in-law dropped them off at the hospital so Matt could take my car back home (good thinking sis).  They arrived while I was still in the lobby waiting for my transportation.  We decided to get dinner at the cafe since I would be missing the dinner hour on the floor.  Salad was great ~

While we waited, Doc Esther walked by, saw me, and stopped to explain further what was going to happen.  Cumadine takes too long to take effect in the body, so in the meantime, I am to get shots of Lovenox in my belly. They have kits and will teach us how to self administer twice a day in the belly for five days.  Wow, what a turn of events!

So, I finally got settled in.  Family has gone home. Meds have been given. Shot has been given. Now, I've just settled back with the laptop that mom & Tommy got and listening to the constant beep in the hallway. 

The pharmacist will be here in the morning to show us how to administer the shot.  After that, I should be able to go home. 

I did call the doctor's office Friday about the port, but was told it was normal.  I mentioned that I didn't want to call and bug and Doc said "you have to be a bitch. you have to nag"  So, next time, I'm going to press harder because I did know something was "off" in my body. 

Some of the other questions:

1) pH balance and vitamin supplements (specially Vitamin D): Doc wasn't very keen on either ideas.  She said the kidneys already did a fabulous job of balancing the body.  If I drink milk, then I am probably getting enough Vit D.  Always room for better food intake and I know I need to do better in this area. Feedback?

2) Talked about the bone-crushing effects and the neuropathy. Doc said that each chemo treatment would have a different level of pain and symptoms each time.  She agreed to change my pain meds. (relief)

3) Talked about chemo and radiation treatment....staying on course? or any changes?  5 more treatments, plus 11 more for the Herceptin.  Then radiation.  Any chance we can cancel the radiation? "not a chance, there would be a 40% chance of canzer coming  back if we don't". hmmmmm

My notes are out in the car,  but this is what I remember so far.

My night nurse, Ashley, has been great.  She is personable and told me about her mother's experience (6 years survivor and doing well).  Her brother is studying pharmaceuticals in Germany and you can tell how proud she is of him.

Backyard

Getting tired, so I'll sign off for now.  I'll certainly keep you posted!
Sleep well ~

Be an Active Participant

I've been reading the Breast Cancer: 50 Essential Things You Can Do book that my sister bought me.  I think it is even a book for people without cancer as it is geared towards "us" being an active participant in our own healing and wellness.  That is something we can all do everyday in all areas of body, mind and spirit.  "The most important person on your health and healing team is you! You are the one who is ill. It is you who must work to get well again. You are the character of central importance. You are in charge."

Sometimes I wonder if treatment started too fast.  I've read that 2nd opinions are strongly recommended....I didn't get one.  I trusted in the fact that my medical oncologist is the head of the department.  I see her Monday to follow-up since my first treatment.  I plan to have a list of questions and concerns for her.  The answers or responses I get will tell me if I'm making right decisions for myself.

Yesterday (Friday), I went to work and wore one of my new hats.  Just wanted to try it out to see how it would feel wearing it all day.  Not too bad.  I felt stronger today, although concentration is still a struggle.  Got my "medicine" of hugs, which is always appreciated.  I'm a hugger. 

My concern is the port.  It is still very, very sore, especially in my arm pit. Deep blue veins are showing from the port across my chest to my breast.  I don't have these veins showing anywhere else on my body like that.  Very strange ... it makes me wonder if something is blocked or wrong.  That will be concern/question on the top of the list when I see her.  If I had a fever or any other sign, trust me, I would go to the ER. 

The neuropathy has been aggrevating. The numb tingling sensation in my hands and feet is worse than hitting your crazy bone on your elbow.  I pray this abates .... today is Day 9 post treatment.

So, over the weekend, I hope to get my notes pulled together to provide Doc Esther with my pain levels, medications taken and any other information since treatment. One thing I can say is that the nausea medicine worked.  I felt queasy at times, but never got "sick".  That's a good thing!  The metallic taste in my mouth and the neuropathy is probably the biggest problem (so far).

I hope you have a wonderful, happy weekend.  We got blasted overnight with a snow storm. The landscape is beautifully white.  May this day be filled with peace ~

Why I am Where I am

Today, I made it through a full shift of work! Oh boy, was I tired, but I did it.  I'm so grateful to have the type of job I do have.  I work in the world of HR/Benefits, mainly leave of absences.  Expert in FMLA.  With this, comes dealing with medical issues and benefits ... but more importantly, people.  In hospice situations, I get involved with their families as well.  There are very special memories I have kissing the cheek of someone who is taking their last breathe.  I whisper, "save a dance for me in heaven".  The special bond with those families is something I will always treasure.

After a month of feeling consumed with my own illness, I was reminded today of why I am where I am. God surely knew where I would be of most value to Him in this world.  I am grateful indeed.

Despite the roller coaster, today was a triumphant day as I rested in God's grace.

pH Balance

As I read through other blogs trying to find resources, encouragement, etc. (see blog list) I came across

pH Balance

What do you think? (scroll down to the chart)

To Cathy

Cathy has been in a lot of conversations lately.  Especially since getting my hair cut.  It brings me back to the poem I wrote a few years ago.  Until We Meet Again

I love you
I miss you

A Chance to Refocus

Blue Ridge Parkway

Thank God for New Days ~

Your prayers for me are always appreciated.  A friend of mine called me tonight and as usual, prays with me before hanging up.  It brings a new meaning to "I'll say a prayer for you".  To hear the words straight to God and to feel warmth inside my soul brings peace.  The timing was perfect. It was also a chance to pray for her, especially for her upcoming missions trip to Haiti.  A chance to "refocus". 

Matt drove me to work this morning. I had a mini meltdown before pulling out of the drive, but I was determined to get my routine going again and to focus on others again.  First call that came in was from an employee whose family member committed suicide.  Refocus.  It's not just about me.

The first person I saw did a double-take with my new hair-do.  She is going on this journey as well and has been a great encourager.  It was surprising how many people didn't recognize me at first.  I've never had my hair this short before.  And I was surprised by new dangly earrings from Miss Debbie :)

By mid-morning, I knew that I wasn't going to last a full shift.  Christie was able to pick me up by 3:00 to take me home.  6 hours of work! Progress!  Sure did move slow, though...hands still hurt, gut hurts, fatigue, but today I know that tomorrow will be better.  Because each day does.

Back to work ... Well, Almost

I cried myself to sleep last night.  The pain in my feet and hands returned full force and my nausea kicked up.  I settled into a fitful sleep after taking a pain pill.  

The alarm went off and I found myself shuffling instead of walking.  Actually, I was walking like I had M.S.  Very unstable.  As I washed my short hair, reality kicked me in the gut again.  That keeps happening.  I got fully ready for work though. Nose bleeding, hands swollen, bones hurting and hubby said he didn't want me driving.  I really wasn't sure how I would anyway.  I certainly didn't want to hurt anyone on the road.  This is frustrating.  I called off work...just one more day...pjs back on.  I'm freezing.  I can see I need a scarf for my bare neck.

It's mid afternoon now and my gait is better.  Please continue to get better....

I was reading some other blogs wondering why my 4th and 5th day isn't "rosy" as what I was lead to believe.  Every one is different and every cocktail is different.  That is the bottom line.  I feel like apologizing to the world for not being a better sport about all this.  For not bouncing back quickly.

Then my sister said that honesty is the  best policy and that sometimes it just helps to know there is a witness.  I think she's right.  I can only relay my journey as honestly as I can and allow you to be my witness.  So, when all this is finally done, you will be a testimony to my story.

In other news, today is Matt's first day back to school.  He was worried leaving me all day.  It will be after 8pm when he gets back.  This is important though and I want him to continue striving for his dreams. 

That is what each one of us should do each day.  Live every moment like it was your last.  Be completely filled up with joy and love and laughter.  That is my wish to you ~

Just Chop it Off ~

Today is Day 4 after chemo.  Better than Day 3 .... but that "better" didn't happen until early evening.  The pain in my joints have lessened. The queasy feeling is still there.  Now I know the days I'll probably miss work.  Thursday and Monday.  Today, was like a mac truck hit me.

Oh well, life keeps going on.

My sister hooked me up with a friend who cuts hair.  Debbie was very gracious to come over to my home to "get 'er done".  It shocked me looking in the mirror ... I saw Cathy. 

Just a short cut to get use to being shiny as a cue ball.  Once my hair starts falling out, Matt is going to shave it for me.  He wants to give me a Mr T look first.  Boys ~

My Album

Day 3

I woke up at midnight with the worse pain in my joints. All day, it felt as if someone smashed my bones with a hammer.  My knees, ankles, feet and hands.  I've had 3 pain pills throughout the day, with no relief.  Headache, queasy.  I hope that this is the worst of it and the last day of it.

Tomorrow is a holiday and, thankfully, no work.  I'm not sure how all this is going to effect my work schedule. I got my paycheck from being off work and it was low.  I just need to figure out how to toughen up and not miss much work.

Sis brought over a wonderful meal of roast and potatoes.  I'm so grateful!

I'm anxious to feel well enough to take the camera out and snap some winter wonder landscape.  Feeling a tad couped up!  Plan to get my stitches out tomorrow from the port. 

It's early evening and I'm finally able to move my fingers enough to type.  Things can only get better. Right?

Day 2

I've been told that side effects generally start on day 2 after chemo.  I'm tired today, had a few queasy moments, body aches, lots of bathroom visits .... but, I'm hanging in there.  Mom made homemade chicken noodle soup, which hit the spot.  I can tell that I'm loosing some tastebuds though.

Christie stopped over tonight to visit.  Glad she did because I haven't seen her in several days since she's been sick.  She looked like a doctor with her blue mask on.  Lots of Purell too.  My laptop wouldn't turn on, so Tommy came over too ... he did a quick fix with the battery.  So, I'm back in contact with the world.

I have to admit that I had a little pitty party today.  Hope I don't have too many of them.  Real downers.  That's not generally who I am.  I pray for strength as this is going to be a long haul. 

Isn't it strange how life can be just moving along and then it all changes out of nowhere.  When my sister died, we all had to live in the "new norm".  It's difficult, but you have no choice.  I have no choice.  And I can't sit around feeling sorry for myself when there are others who are dealing with this canzer-thingy so much worse.  So, I apologize for my rantings.....

Life goes on.  One day at a time. Right?

And tomorrow is a new day.

Thank you, Jesus, for never letting me go.

The Day After - January 13

I'm not superstitious (don't tell grandpa). So, today is just another day.  Woke up to a whole lot of snow.  First heavy one since winter started. 

Slept on/off last night, kinda tired today.  Had a bowl of cheerios (good) and a cup of coffee (not so good).  Note to self, no coffee after chemo.  Took all required meds this morning...fighting off nausea.

Called Radiology today about my stitches.  Suppose to get them removed 7-10 days, today is Day 8.  She told me to stay home because of the weather and that Monday would be just fine.  Happen to have Monday off work, so that is fantastic. 

In the meantime, Matt was busy snowblowing.  He wanted to keep up with it anyway. 

Got a call today regarding a test of gene patterns called Oncotype DX.  There is still research to show if this test is beneficial, but I think anything that we can do to help others is worth it.  After talking about costs ($4,100) and I qualify for financial support bringing the total to ($0), I said yes. 

Ordered my hats & scarves today.  Should be here in 2-3 days (I hope).

Gonna bundle up and go rest today.  May God keep you safe and comfort you always.

First Chemo Treatment - January 12, 2012

Before we left, I had to rub the "numbing cream" on my port (1-1/2 hr prior to treatment).  Once on, wrap it with saran wrap.  Don't try this on your own, lol.  Many hands are needed for this.  It did help, as I didn't feel a thing ~

Well, we arrived at 8:30 to check in.  I got a card to swipe like I got in radiation office. Our first meeting was with Denise, our social worker.  Very nice young lady who described what to expect and to offer her assistance as the "navigator".... to help with billing disputes or financial assistance, to gauge my stress levels and help with various other counseling needs.

After that, we were called back to our little nook and settled in.  My nurse today is Gina.  She has 4 year old twins!  Before chemo, I had to have blood work to get my baseline and levels, EKG.  All set up with the port, which was numb from the "numbing cream" I put on before we left home. We had to wait for the results to come back in order to clear me for my cocktail. Doc Esther came in to give the all clear and check me.  I gave her the 2 pictures of my arm for my file, lol.

The pharmacist, Nicole, explained each of the medicines that will be used.  (I have to adjust an earlier post).  My cocktail is still TCH for 18 weeks = 6 treatments

11:10am My first medicine was Herceptin.  The IV for the first treatment is 1-1/2 hour long "loading dose". The remainder treatments will only be 1/2 hour. Before I get Herceptin, I took benedryl and Tylenol.  Nicole explained that "H" is a "smart" chemo drug that is specific to the cancer its treating.  This is also the one that my heart is closely monitored for side effects.  I will have an echo every 3 months.  Did you catch that? I will be on Herceptin every 3 weeks for a full year.  I didn't catch on that before.  I had the impression it was pill I would be taking. *sigh*  HOWEVER, by ITSELF, there are no side effects.

I took a nap during the Herceptin.

Next, Taxotere.  3 hour infusion. 6 weeks total. They are watching for allergic reactions. Such as chills, labored breathing, flushed, chest pains.  So far, so good. Before the chemo med was connected, they gave me steroid, pepsid and benydryl (again). So, this is the one where I lose my hair, lowers my blood count and can get neuropathy (hence the ice bags on my feet and hands to narrow my blood flow).  Body aches during the first 24 hours thru 3 days.  IV done 4:34pm

Remember the TV commercial Madge and Palmolive?  This is my rendition.

Quite a process of untying the bags from my feet, removing the pressure cuff from my leg and taking my IV stand with me to the bathroom.  All those fluides. Which was A LOT of times throughout the day.  A LOT.

3rd is Carboplatin. Started 4:45pm, infusion 30 minutes.  Side effects nausea. They will want to check my kidneys periodically. After that, they will flush with saline and run an anti-clogging medicine. Then home. I'm the last patient here.  All the nurses are gone but two.  Nice and quiet ~

From My Viewpoint

Dad & Marge stopped by to wish me luck.  Dad also gave a gift for hats, scarves.  Mom is making dinner for us tonight. I'm so very thankful!


Everyone has been very kind here.  I think I will see what Stewart's Place is all about since everyone keeps talking about it. 

I really need to do a better job in drinking water and eating better.  I don't eat junk, but I don't eat much of nothing else either.  Plus, EXERCISE!

Doesn't look like I will be able to get the stitches out today as the nurses in Radiology will be gone by the time I get out of here.  Hmmmm.....

We got home around 6:00pm.  Dinner, resting.  Tired, but no side effects (yet) from Chemo.

Thanks for walking thru my day with me ~