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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6 Comments (+add yours?)

  1. Marianne Grimbly
    Oct 13, 2016 @ 14:28:50

    I had to laugh out loud at your lady beard comment. I’m just about at the stage where the circus will be calling so I understand completely. LOL Leslie you are such an angel, here you are about to lose your own hair but you’re making lemonade out of the lemons to donate it to someone else who needs it, As if that’s not enough, you’re sitting there making cards for your caregivers! All I can say is that I sincerely hope that you wont have too rough of a time going through this chemo stuff. I hope that before you know it, it will all be over with. Prayers for you everyday sending big hugs! Marianne

    Reply

  2. Gayle Enouen
    Oct 13, 2016 @ 19:05:13

    You are a warrior, Leslie! Love how you found the one humorous and beneficial place of hair falling out. You will be beautiful no matter how much or how little hair you have a month from now. I’m still praying for you…and also for Joe. I know many people are.
    Lots of hugs,
    Gayle

    Reply

  3. pearl
    Oct 13, 2016 @ 20:26:25

    well i feel like crying watching another friend or family member going through this. you will be fine with that other calm person taking over.i always think it is amazing that person has come with me to surgeries every time. treasure her she is your guardian angel and she will see you through. it is wonderful that you have hair to donate and selfless that you are not using it for yourself. my friend Sandra and many other ladies have found that when their hair grows back it is curly so you will have to think of a new style. hee hee. Joe did a wonderful job on the omelette. he has a difficult job watching you have your treatment. i just know you will beat this bast… thing. tons and tons of hugs and healing love to you both. xxxxxxxxxx

    Reply

  4. Jeanne Casella
    Oct 14, 2016 @ 20:55:12

    Leslie, you rock! Thank you for being so open and honest about this. Your story has encouraged me to see a dermatologist about some marks; waiting for my 1st appointment.
    Your ending to the old adage, “when life hands you lemons…” is “I throw them back.” Good luck.

    Reply

  5. Jack Flacco
    Oct 17, 2016 @ 06:42:38

    I’m sorry for all this that is happening to you, Leslie. I don’t know what else to say. Let me know if you need anything…

    Reply

  6. laurab4961
    Oct 24, 2016 @ 15:30:27

    A few things I found on my journey: Nice to have someone cook for you. For me it was my sister. She made me protein shakes for between small meals. Even though puddings were recommended by the nutritionist, I found sugar turned my appetite completely off so the shakes helped me get in fluid as well as protein.

    . Nice that you have the new Neulasta thingy, have seen it on TV. I had to inject myself . keeping up with fluids, food and nausea meds is important.

    I wore a wig once, quite hot so wore caps after that. Great you were able to donate that long hair. I am sure it was appreciated.

    I never bothered with the numbing stuff either…just takes more time. The nurses had me take a breath before they stuck me and I think that helped. or maybe it just gave me something else to think about. 🙂

    sending hugs and prayers. just be kind to yourself.

    Reply

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