My first dance with the “Red Devil” – Doxorubicin

I have Stage 3 Hormone Receptor Positive – Invasive Ductile Cancer….or something like that.  Cancer in the left breast which started in a duct and has grown outside and into the surrounding tissue, nearing the outer skin.

I have been treated with Faslodex, which is a set of chemotherapy shots to target the Estrogen hormone in my body which feeds the breast cancer.  I had three treatments of Faslodex.  My doctors were concerned that this treatment was not working in the manner they had hoped for.

Today – October 12, 2016 – is my very first IV Chemotherapy treatment.  What am I feeling?

  • A bit scared
  • Heard way too many horror stories of chemotherapy in the past
  • Feeling a bit separate from my own body….not quite out of body but like a different personality is taking over….One that is calm
  • A bit worried about excessive pain, vomiting, and a lot of discomfort

I was instructed, several days ago, to take one of the anti-nausea pills several hours before the chemotherapy treatment.  Take one of my $250 pills at 7:00 a.m. before we leave for my 8:30 appointment with my Oncologist.

Anti-Nausea Meds

Anti-Nausea Meds

On our way out to join the craziness of interstate commuters at rush hour going into Oklahoma City….we were greeted by a beautiful sky with the morning sun reflecting off building clouds.

Morning cloud cover

Morning cloud cover

After seeing my Oncologist’s Physician Assistant, who is amazing by the way, I was ready to begin this journey.  I had to call the Chemo Desk to let them know I would be late for my 9:00 appointment this morning.  I was just down on the second floor for my 8:30…..look everyone is doing their best to get me seen and cared for.

It is my responsibility to alert the next appointment when there are delays.  Most people don’t see it that way.  “Hey, it’s not my problem.  I was early to my appointment.”  Who knows if, or when, someone can call my next appointment….even one floor up.  I can do it myself and know that it has been done.

Okay.  I have to be totally honest here.  When I arrived for my Chemotherapy appointment, weighed in, was asked to choose a place to be seated throughout the treatment, and informed of all the beverage and snack options available to me….I was beginning to feel a bit of TMI going on.  Once the Clinical Nurse Specialist – an AMAZING WOMAN – came to tell me about the various drugs I would be getting this morning and their side effects….She asked me if I understood what she had just told me.  Ya.  Uhm.  Okay.  Actually this is what was going on.

Information Overload

Information Overload

Doxorubicin (doks oh ROO bi sin) is a generic name for Adriamycin.  This stuff is SO TOXIC that 550 mg is my LIFETIME dose!  For the rest of my life I can’t have one more drop of this stuff.  EVER!

The favored name of this drug is “Red Devil” or “Red Death”.  Do you feel comforted by this information?!  I think that is when the train wreck happened.  I did a lot of nodding from this point on while I most likely had a glazed over blank stare.

This drug is preferred to be administered through a Chemo Port (of which I have one).  The nurse who will be giving me the drug needs to make sure they actually SEE blood coming back into the line as they go from one dose to the next.  This is to insure the drug is in the vein and not out in tissue.

Are you ready for this?!  If this drug gets out into the tissue it will EAT IT!  This drug is a “Vesicant” – a chemical that causes extensive tissue damage and blistering if it escapes from the vein.

Doxorubicin - Red Devil

Doxorubicin – Red Devil

Just so I know that they have the "Big Guns" going...I guess

Just so I know that they have the “Big Guns” going…I guess

The most common side effects (30% of patients) of “Red Devil” is pain along the site where the medication was given.  Nausea and vomiting.  Low blood counts.  Both white and red blood cells have to be monitored.

This drug has long term possible side effects as well.  Heart damage, and Leukemia are two of the major possible side effects.  Another one is Tumor Lysis Syndrome where the tumor dies so quickly the kidneys can’t cope with the amount of dead cancer cells pouring through my system and into my kidneys.  This can be the cause of kidney failure.

The first five to eight days after Doxorubicin treatment – I and my bodily fluids are TOXIC WASTE!

  • Flush the toilet twice, with lid closed, after each use.  Wipe toilet seat, lid, under seat, porcelain rim and sides.  After each use.
  • My clothes are to be washed separate from Joe’s clothing and/or other household laundry.
  • Bed clothes laundered twice.  One cycle of regular soap and heat temp.  Second round water only to flush out the toxic night sweats.
  • No kissing Joe – my mouth can have sores and some bleeding.
  • Wash hands constantly, or use hand sanitizer…constantly.  Optimally do both.

Within 10 to 14 days my hair will fall out.  ALL OF MY HAIR.  From the top of my head to my toes.  Yes.  Possibly eyebrows, eyelashes, PRAISE THE LORD MY OLD LADY BEARD WILL BE GONE!, arm pits, pubes, legs, and any other hair that I don’t even know about will be shedding itself.

Tomorrow – October 13, 2016 – Joe and I are going to a hair salon that will donate my  hair to Pantene Beautiful Lengths – I have 8 inches of hair to whack off.  Some of it is gray or graying but a large portion of it is brown.  So, don’t be alarmed when you next see me with very short hair!

Pantene Beautiful Lengths provides human hair to wig makers for cancer patients that need wigs.  I had originally intended to donate my  hair (and have done this in the past) to Locks of Love.  This organization is for young girls and women who suffer from permanent hair loss at a young age.  Alopecia Areata is permanent medical hair loss which has devastating effects on young girls.

Why am I giving my hair to Pantene Beautiful Lenghts instead of Locks of Love?  Because I am actually going through this process myself and wish to help someone that is traveling along my path.  Someone that is not comfortable with the physical effects of cancer treatment.  I know that I can ease one person’s fears and concerns and I am up for that.

Cyclophosphamide-(Cytoxan trademarked name) is the second chemo drug in my cocktail.  This drug is delivered via IV drip.  I have to drink 64 ounces of water and/or decaffeinated beverages DAILY, with instructions to “Empty bladder frequently – Don’t hold it”.

30% of patients experience:

  • Low blood count – white and red cells
  • Increased risk for infection, anemia, and/or bleeding
  • Temporary hair loss 10 to 14 days into treatment
  • Nausea and vomiting, usually beginning six to 10 hours after therapy
  • Poor appetite
  • Discoloration of skin or nails.  Dark nail beds.  For some patients, nails will fall off on both hands and feet.
  • Diarrhea
  • Mouth sores
  • Bladder infection and bleeding.
  • Rinse mouth after each meal with 1 teaspoon of baking soda mixed with 8 ounces of warm water.
  • Use of an electric razor is recommended for any shaving – men or women

My Chemotherapy Nurse would be with me throughout the entire process.  This would take four hours from start to finish, not all of it constant supervision.

She came wheeling a cart of supplies to get this party started.

Cart of supplies

Cart of supplies

Now she is getting serious!!

Getting down to serious work

Getting down to serious work

When I saw my surgeon the day before, I asked him about the Lidocaine ointment I was supposed to put on the Port thing to ease any pain of the needle being inserted.  His response “Not necessary.  Children have a worse time of it and it is essential to be used then.  Adults don’t even notice it.”

Can you guess what my Chemo Nurse had to say about that when I walked in without my port covered in plastic wrap?  The Lidocaine ointment has to be administered 30 minutes prior to puncture.  The Port must be covered with plastic wrap during the 30 minutes time.

Even with her counting to THREE before pushing the needle in….YIKES it was uncomfortable!  Survived It!  YAY.

Port in use

Port in use

The first hour or more was spent having the standard drugs run through.  Saline drip, an anti-nausea drip, some kind of steroid for something else.  All while waiting for my TOXIC SOUP to arrive from the hospital pharmacy.

While I’m waiting and feel good I’m going to keep my hands busy.  I brought a small packet of pre-cut and pre-scored items to make my little 3 x 3 note card gift totes.  Joe took this photo to share with our kids.  Each person that comes to take care of me today will be given one of my “Thank You” totes.

Passing the time

Passing the time

Creating the little totes

Creating the little totes

Joe spent quite a bit of time enjoying the aquarium next to him watching a clown fish and a clam or oyster shell open and close.  Each time he got a bit closer to the glass the shell closed, he had to patiently wait for it to reopen.  Joe’s big question…”Where are they eyes of the clam?”  How did it know he was getting closer?  Love that man of mine! 😀

I love this man of mine!

I love this man of mine!

I asked my Chemo Nurse how long she had been doing this work and why she enjoyed working with cancer patients.  Her answer made me wonder at how life’s perspectives get tipped over one their head.

She has been a Chemo Nurse for 21 of her 25 years in nursing.  Coming to Chemo she found that the patient’s attitudes are so different from the general patient population.  “On a regular floor” she said “if a patient needs pain meds they push the call buttons and call out frequently.”  She continued “When we arrive at their room they demand pain meds immediately!”  Those memories are still quite troublesome to her and I could hear it in her voice and see it in her hands as she gave me the Doxorubicin.  I mean, I had her undivided attention for at least 30 minutes, I just had to be a Nosey Parker.  “The Chemo patients say”, my nurse continued, “When you get a chance I will need a bit of something for the pain.  No hurry.”

Someone in the hospital for a bad appendix, gall bladder, hip or knee replacement, or any other kind of surgical procedure is bound to have a lot of pain.  Is there a difference in attitude between general hospital population and the Chemotherapy population?  There are people in both arenas that are terrified of dying and of the “Big C”.

I’m wondering if the difference is the quantitative care one gets in Chemotherapy over a regular hospital floor.  The Chemotherapy floor is wide open and circling the Nurses Station.  Special reclining chairs with arm rests are everywhere.  IV poles and machines are next to each chair.  The Chemo patients see the bee hive of activity by the nurses as they move about tending to their jobs.  In a regular hospital room you don’t see the nurses until they come around for vital signs or to do a spot check.

The last drug I have is a timed one.  24 hours after my Chemo treatment this little device will inject Neulasta into my system to cause my bone marrow to create more white blood cells to fight this cancer and treatment.

Neulasta - at home in my pj's

Neulasta – at home in my pj’s

My Chemo Nurse said, about 15 minutes after she placed this busy little packet on my stomach, there will be a sound like a rubber band snapping and I will feel a pinch as a “Canella” will be inserted under the skin.  There is a flashing green light counting down the timer to injection.  Which will be at about 4:30 the next afternoon – October 13th.

Joe was getting ready to take a video of the thing shooting into me.  He was so excited to see me jump and yelp.  He wanted to have this documented forever, my startled exclamations and all.  Uhm…..he missed the whole show.  He DID MISS IT!  Sitting right there in front of me, cell phone camera pointed and ready.  I yelped and jumped and startled HIM!  He had not had the video button pushed at all.  ROTFLMAO!  😀

The most common side effects – 30% of patients.

  • Bone pain.
  • Pain in shoulder blades, sternum, long bones
  • Achy and sore feeling.  Kind of like the flu
  • Tenderness at the site of injection

For the remainder of the day I felt pretty great.  Sweaty at times but not bad.  This morning (10/13) I woke feeling energetic and ready for the day.  Joe fixed me breakfast.  Listen people this was his very FIRST attempt at making an omelet and I think he did FABULOUS!

Joe's omelet skills

Joe’s omelet skills

Making of the omelet

Making of the omelet

Okay, it is time for me to go do some things I need to take care of for this week.  While I feel like I am able to do things.  My energy level is depleting hourly now (October 13th) so I better get busy.

Leslie

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Going Old School to meet a need

Using a letter stencil

Using a letter stencil

There are many YouTube videos on using word dies on card fronts.  Boy, some cards are so awesome in their design and the creator of the cards are unbelievably talented.  I’ve wanted to make a card featuring the cut out word or phrase but I don’t have the proper dies.

I have letter stencils!

Letter stencils

Letter stencils

The trick is….turn the patterned paper  you wish to use over to the back side.  Also do the same with the letter stencil, turn it over so it is backwards.  The letter tracing will be from the RIGHT to the LEFT instead of how we normally read – Left to Right.

Backward stencil and back side of paper

Backward stencil and back side of paper

Carefully cut out the traced areas.  Make sure to go slow.  You can use the cut out parts on another card.

Use the positive and the negative

Use the positive and the negative

I was going to use my Tombow glue to attach these pieces but it didn’t want to come out.  I had to use Glossy Accents.  Worked fabulous on the large cut out piece, but got pretty messy on the cut away letters.

Glossy Accents

Glossy Accents

A bit messy from Glossy Accents

A bit messy from Glossy Accents

I have not used my little Xyron Sticker Maker in a long time.  Since I’ve already messed up the front of the letter piece with glue showing I might as well make it really shiny 😀

Xyron Sticker Maker

Xyron Sticker Maker

Glitter

Glitter

As a newby card maker or even a scrapbook layout person, don’t get yourself all boxed into the belief that you “HAVE TO HAVE” specific machines and tools to do what you want to do.  There is, ALWAYS, a way to do what you want.

I had my Chemo Port implanted yesterday while my tutorial video was going up.  Joe is out of town and will be home Sunday.  My neighbor was very kind to take me to the hospital and come and get me when the procedure was done.  What you see here is one drugged up woman 😀

Chemo Port implant

Chemo Port implant

Hope you all have a wonderful weekend.  Those of you that have been in the path of Michael my prayers have been for your safety and comfort.  Many people will be displaced for a time, electricity will be off in some areas, scary times for everyone.

I’ve had to be peeled off the ceiling. Freaking Out Here!

I was in my craft room preparing for my video this Friday.  Do you have the word dies?  They are all the rage right now.

Image result for word dies

123Stitch.com sells these dies.  I’ve seen several tutorials on YouTube using these dies on card fronts.

I don’t have any.  If I don’t have any, I am sure I am not the only one.

Anyway, back to the reason for this post.  I was working away with my letter templates when I got a phone call from the OU Hospital where I am getting my breast cancer treated.

I don’t have a precise schedule for the surgery to implant the “Port” this Friday that will be used to deliver the chemo drugs next week.  I had been called on Monday and told someone would call me on Thursday to schedule the surgery and let me know where to go to have it done.  Then the following Wednesday would be my first Chemo treatment.

Back on track Leslie!  So I am working away in my craft space when I get a call from the Scheduling Department at OU.  The woman whom I spoke with told me I needed to have a $2,000 deposit on the day of my surgery.

WHAT?!  I don’t have insurance.  We can’t afford insurance coverage for me.  We have never been able to afford the extra coverage.  Joe is on Social Security and Medicare so his medical issues are handled that way.

I was so stunned by the call that I didn’t know what I was going to do.  I guess I just won’t be going on Friday for the Port surgery and I won’t be going to the chemo treatment next week either.

I told the woman I did not have the requested money.  She told me to get hold of the financial people at the hospital to work out some kind of arrangement.

Honestly, my brain had shut down after being told I needed $2000 before I had the surgery.  I hung up the phone and FREAKED OUT!

Throughout this breast cancer journey I have been able to give this to God and trust the doctors and the process.  Today….well let’s just say that I had a “Moment”.  Boy did I ever!

What am I going to do?!  Where am I going to get the money?!  I have less than two days!!  This means I will not be getting the treatment!!

Lord, I keep telling you I am leaving this in your hands.  I keep saying that this is yours to deal with because I have no control over this right now.  Then something like this happens and I take the problem back from  your hands and try to deal with it myself.

I called Joe and told him what happened.  GREAT!  FABULOUS!  That was the CORRECT thing to do.  I’m all freaked out so the best course of action is to freak my husband out while he is dealing with problems in Sylmar, California and Phoenix, Arizona.  Yes.  Add to his growing worry and problems.

So, Leslie.  How did that work for you?  Heavy sarcasm.

Joe didn’t have an answer either.  I had accomplished one thing though.  Now BOTH Joe and I are freaking out and clinging to the ceiling!  Way to go girl!

Back in my craft room I went.  Working on a couple cards to demonstrate on Friday I had my odd chat with God.  I don’t know how a person is supposed to pray.  Properly pray.  I just blab.  Nothing flowery or special.  Frankly what flits around in my brain comes out of my mouth.

Lord, I know I am supposed to leave this to you.  You are working to get the proper people lined up to help me in my cancer treatment.  You have the financial things under control.  I don’t believe this way of thinking, and you know it.  You know that I do whatever I can to take on the problem and solve it as best as I can.  You know that I have a lottery ticket worth $3.  I can take that to the store and buy another ticket for the $80 Million drawing soon.  I also know that is not going to work.  Putting my faith and trust, ALL OF IT, out into the ozone is not how I deal with life.

Okay.  I’m putting this problem back in your hands.  I will come and take it back about 10 times today.  I am going to believe that this whole thing is under control and I have to trust the process.

As I worked on the cards trying to distract myself from this major problem I thought about calling the Financial Advisor I am dealing with at the Stephenson Cancer Center.  Call her and find out what my options are.

Over the following 30 minutes I had my answer.  To my financial problem and to my prayer.  I make sure I show up for the surgery on Friday when it is scheduled.  There are forms for me to fill out that can  help with the surgical costs.  I have 14 days from the day of the surgery to get an answer to my filing of the form.  If I am disqualified I will owe the $2000 then and can make payments.

In short.  I don’t need to have the $2000 the morning of my surgery.

Is this God working in my life?  Or is this standard procedure at hospitals?  I am going to say that the answer to this is BOTH God and the hospital are working in my life.  I have a large group of people that are getting me through this journey.  Some hold my hand.  Some talk me down from my lofty  heights.  All of them ease my fears and get me thinking straight again.

I believe that God whispers and it is up to me to listen.  Make the phone call and get things started.  Get my answers.  Just listen, and believe as much as I can.

I had to share this with you.  You may not believe in God.  That is of no concern to me.  I wanted to share my eventful morning and early afternoon.

Don’t FREAK OUT when you are met with a seemingly closed door.  Find out who has the key or where there is another door.  People work at hospitals every day of the week, month, and year.  They deal with all financial situations.  Insured and non-insured.  I was even told today that some insurance companies don’t cover the Port surgery because it is an “Out Patient” procedure.  Anyone can be met with this kind of a problem.  Make some phone calls and find out what your options are.

Leslie

Love in my mailbox

I am so blessed.  Checking my mailbox to find it stuffed.  Jammed full I tell you.  With the normal junk and bills….WAIT…there is something else in there!

Love in my mailbox

Love in my mailbox

From Lidia Vasquez aka Kitty Kard Kreations came a card.

From Lidia Vasquez

From Lidia Vasquez

aka Kitty Kard Kreations

aka Kitty Kard Kreations

A box from Karen Melton all the way from Florida.

Karen Melton

Karen Melton

All the way from Florida

All the way from Florida

A thick envelope came from Michelle Birdsong.  She lives in North Carolina.

Michelle Birdsong

Michelle Birdsong

From North Carolina

From North Carolina

I even received a note from one of my Medical Wizards!

Kristen Squires

Kristen Squires

OU Medical Center

OU Medical Center

What is that?  You want to know what is in each of the packets?  Well……you’ll have to watch my video 😀

This is me signing off by saying “I AM SO BLESSED!”

Questions about embossing powder, envelopes, and clear stamps

I asked for questions about crafting…any questions.  You responded.

Becky Bitting asked:

Make my own envelopes or purchase them?

Make my own envelopes or purchase them?

Sophie’s Choice asked:

HELP!  Embossing powders.

HELP! Embossing powders.

Karen Woolsey asked:

Clear stamp storage

Clear stamp storage

I had a couple birds help me with today’s video.  Thank you, Maureen Criss Mathis, for the long ago gift of the birds.  😀

Becky Bitting asked if I made my own envelopes.  My answer, in the video, is not really but I do.  I have the WeRMemory Keepers Envelope Punch board.  I have used it to make envelopes and the gift tote, for the 3 x 3 note cards I have been giving out to the medical staff helping me through my breast cancer.

Envelope punch board

Envelope punch board

Note cards with tote

Note cards with tote

Sophie’s Choice asked me about embossing powders.  She is considering these products to be her next purchase and wanted some advice.

Black embossing powder

Black embossing powder

My stash of embossing powders

My stash of embossing powders

Karen Woolsey asked me about my clear stamp storage.  There are a MILLION videos (well….that might be a slight exaggeration) on YouTube featuring various ways to store clear stamps.  Well, let’s just say that my method is not so original.

Clear stamp storage

Clear stamp storage

I don’t have many stamp sets.  Why, you may ask?  I am a terrible, horrible, absolutely worst ever stamper and I don’t enjoy the process.

While I was clearing out old files on my computer I found a photo you might be interested in seeing.  My craft room November 2003.  13 years ago next month.

November 2003

November 2003

September 2016

September 2016

Here is today’s video 😀