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