Western education 2013

Monday, July 8, 2013

.... a long day and lots of administration......

..... in order to get my medications filled and paid for by the insurance companies and the Victory Program.  The Victory program is a charitable organization set up to support patients requiring financial assistance to help pay for the medication produced by AMGEN.  This medication, Neulasta  used to jump start the immune system 24-48 hours after chemo and costs approximately $2,600 per injection.  I will require 6 such injections, one after each chemo.  I had taken out student insurance for my family and I when I started at Western this past year and they, in conjunction with the Victory program,  have covered the costs 100%.  If I did not have any insurance at all, The Victory Program would contact Trillium, an Ontario government insurance through OHIP to cover the cost of Neupogen which is essentially the same thing but administered every day after chemo for 7 days.  It is a good thing I remembered all of this because I was making all the arrangements with the Victory Program and doing an Urgent Rush on the insurance company.... just in time for today.  The doctor wrote the script today when I was waiting for it to be filled at the pharmacy.  That pharmacy is the most efficiently run pharmacy I have ever seen.  I have my shot covered and when I got home, I faxed the letter sent to me by the insurance company.  Whew.... only took 2 hours to get all this done..... normally, everything is in place but because I was and urgent case, there was little time to get everything done and in time.  Normally I go to pharmacy and everything is ready to go for me to pick up.

CCAC (Community Care Access Center) is contacted through the nursing staff at LRCP (London Regional Cancer Unit) in order for me to receive nursing care to administer this life saving inoculation and to see if everything is OK with me in general.  I have contacted a friend of mine who is a diabetic to help me just in case.  Mark gave me an inoculation during my fourth chemo treatment because the nurse forgot?!  If I have to take the Neuprogena, I will have to give it to myself because I will be at work during the last three treatments.

....... Chemo Day July 8, 2013.......

I didn't sleep well last night and kept waking up.... sometime in the middle of the night, I remembered a few days prior at my 'Lost Locks' party that I was standing in the kitchen doing something and turned to see who was standing to the right of me.... I thought I saw something move and then it was gone.... almost a shadow of a person.  I believe in guardian angels and I think I might have just perchance caught a glimpse of mine.  While a lot of people might not believe in this, it has given me hope that I am being looked over.  In my first journey, I was drawn to the Sylvia Brown books and read one after another..... some of what I read rang true to me.  I have heard many stories of people since who have seen the 'other side' just before passing.  My friend Ruth, at the age of 80 saw a door open, light shining into her room and silhouettes standing where there should have only been the corner of the room.  Her partner must have heard her speaking out because when he opened the bedroom door, they and the light disappeared.  Ruth did not want to go and felt she had so much living to do..... she would cross through the door a week later.  I miss Ruth but I know she is dancing in her new home and is pain free now.  I love you Ruth.  My Grandmother saw the other side soon before her passing and she waited long enough for my mother to make it into German air space before passing away.  My father flat-lined last June and although he has advanced Alzheimer's, he was able to describe to me about touching the ceiling in the emerge department after he was abruptly returned to his earthly confines.  For a few days after his return to the home, he kept trying to reach the ceiling.  I love watching Theresa Caputo, the 'Long Island Medium' for the amazing work she does.....but I digress.... that is not where I am at in my life's journey... just a sideline into my very private life.  I am intuitive and spiritual, not religious.... it is about being human and in touch with the soul side of our being.....  at any rate, I forced myself to stay in bed until 7 am and got up to take a shower and grab a coffee.  Ah coffee and my Keurig... do mornings get any better than this?

I can feel the anxiety rise and the toast I made tastes like cardboard as I attempt to wash it down with the coffee.  I should have added Bailey's but we ran out yesterday.  I rarely imbibe when I am on chemo, so I would have just taken the cream anyway.  I debate on whether to wear head gear to go out to the hospital and Max decides that I need to wear the Hard Rock Cafe one we bought in the states.  So here we are, both wearing matching head scarves and hairdo's!!!  I also brought my new big pink scarf for the chemo suite because it is always cold there and I use it for head and neck to stop the drafts.  We find ourselves sitting along the wall just outside of the chemo suite and chat with a man who is also going through his second journey.   I am so tired and leave him to be the chatty one.  I need a coffee and I ask Max to grab me a Tim's on the floor below.  The gentleman next to him points out the coffee cart is across the way and he heads off only to return minutes later smiling.  He has found the cookie basket beside the coffee decanter and he sinks his teeth into a Peek Freen.  He gives me a package and then asks me if he can have it when I do not eat it immediately.  I smile at him and put it in my purse..... which comes in handy later when the administration duties takes over 2 hours to complete.  I am too tired to talk much and resort to playing games on my iPad and reading the paper on my daily download.

The pager goes off and we head into the suite to meet Tanya who will be caring for me today.  The suite is filled with comfy recliners, automated drip dispensers on roll a way T-bars and beds.  We choose a chair next to the windows and Max grabs a visitor chair to sit across from me.  I pulled my head scarf off in the waiting room earlier.  The humidity is thick in the air and the air conditioner is keeping up but it still feels too warm with it on.  The suite itself is cold and I pull out my new large pink scarf to cover my head and neck from the cooling breeze.  Tanya will need to find a vein and I figure she would choose the one that everyone else does - right in the crook of my elbow.  She applies a hot compress to my arm to bring the veins to the surface and make it easier to insert the IV tube.  Tanya gives me two steroid pills and an anti-nausea pill before beginning treatments.  Chemo is very toxic and will damage the veins so she will start a saline IV to 'rinse' the veins for 5 minutes before and after the chemo is administered.  She will begin with the first two chemo using a click lock insertion device installed in the IV line for the large click lock syringes that she will use to manually inject into my arm while the drip is still going - Cyclophosphamide and Epirubicin.  After that, she will run the lightly colored yellow 5-FU (5-Fluorouracil) IV drip that can sometimes cause the shock of pain you get with a cold ice-cream.  I do not get that but I do feel the sinuses begin to slightly swell and a light headache later after the chemo is done.  From start to finish is just over an hour.... some patients will be there from 9 am - 5 pm on a series of drips.  There are many different cancer drugs available and cocktail mixes and methods of deployment.  Everyone is different.  Some will keep their hair, while others, like me, will not.  I am grateful for the ladies who carefully buzzed my hair.  I cannot shave or do anything that can open the skin and allow a possible infection to occur.  There are many things to remember about chemo and your personal care and hygiene.  I have a first aid kit in my purse in the event that I injure myself.  It contains a first aid anti-bacterial spray (melaleuca), triple antibiotic cream, bandages and all my medications.  I have asked for a reflux medication to help with the extreme reflux experienced with this chemo. Nausea and vomiting are not an issue as this is dealt with by taking medications for the first few days after chemo.

Max and I are finally ready to go home after getting the medications - all paid for!!!  Thank goodness I took out the extended health care for us from Western!!  We are both super hungry despite the fact that Max was served more cookies in the chemo suite by the lovely volunteers.  For volunteers in the chemo suite.... they will see all of us on our very best day. We head out of the parking lot - I use my credit card instead of obtaining a ticket - easier to use and it works well.  Insert when you enter the lot instead of printing a ticket and inserting it on exit where you will receive a receipt.  Each visit works out to about 7-12 dollars..... yup, expensive.

We head out to the MacDonald's on our way home.  I am going bald and the humid wind blowing over my head feels really weird... and liberating.  We have to go to the pool store on our way and I help choose out a new pool brush and filter nets.  Yes, I am being stared at but in a very polite way.  It's not every day you see a woman with a shaved head.  We get home and I am on the phone with the Victory program to make sure that I can fax the paperwork from my insurance company to them.  I have rigged up one of our phone lines to a fax machine at home and it is sent out immediately.  A call to CCAC and the nurses ensures that I will have medical assistance at home.  I am fighting drowsiness as I am blogging this entry.  I have a headache and the sky is ominous with intermittent torrential downpours.  Max and Paul joke that they are filling up the pool and the pond.  I can hear voices in the kitchen and all the neighbor guys come into the living room to say hi and to see my new doo..... I think they actually admired my dome!!!  Secretly, they looked jealous....LOL!!  They just want to make sure I am OK.  I miss Brenda M. she is not feeling well at all and I haven't seen her in days.  Sending out lots of hugs and kisses that you feel better soon.

William and Paul will stay the night to look out for me tomorrow when Max goes to work!!  I am now really exhausted and my body is begging me to go to bed now that I have taken tonight's meds with dinner.

Rule #11 - if you offend or hurt someone's feelings, whether intentional or not..... do not start with 'I am sorry you feel that way, but'  it is another way of saying that the person you offended is wrong to be offended by your remarks.  Start with 'I am really sorry, I had no idea I was hurting your feelings......'  It is human to err, own what you say, apologize and be real with people.... they will appreciate and understand it comes from the heart...... xoxoxo

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