Phases & Stages

October 30, 2012

Yes, I am still here…

Has it been worth it?  “…absolutely YES!”

As I enter into week 33 of treatment and review what has occurred during these past 7 months I feel a sense of encouragement … “things are going to be more than okay”.  I have made it over a few life changing hurdles that have reminded me of how resilient I can be.

The hair loss, rashes, soars, allergic reactions, chemical-like burns, facial swelling, vomiting, bleeding, adverse drug interactions, severe fatigue, weakness, fevers, headaches, lack of sleep, upper and lower abdominal pain, lower back pain, muscle contractions, and limited concentration have at times proven to be difficult to endure. Has it been worth it? If the virus is undetectable and does not return … absolutely YES!

Outside of the challenges directly related to stage-4 cirrhosis and HCV treatment the trials that occasionally come with life have added their own sting to this mix. During this process I have received news of my stepfather passing away, then my birth father, followed by my sister. I hadn’t fully mourned the loss of one when news of the next passing arrived.  I fell into a depression for a few weeks.

I contacted a couple of trusted friends who listened and patiently supported me while I talked through it. They kept in contact with me every day for a few weeks and helped me work through what I needed to.  My children proved to be an enormous support as well.  In time I started to feel myself breathing from a healthy place again and I was smiling.

“Things are going to be more than okay.”

It seemed like I just got my breath back when I received a call from my boss.  She informed me that I was no longer employed by the educational institute I had worked for over the past 5 ½ years.  As she spoke on the other end of the telephone my internal dialog kept repeating, “Who does this to an employee while they are on medical leave and part way through a treatment?”

 

Whether a person is able or willing to return to their place of employment once treatment has completed is one thing.  But to implement a decision like this mid-way through an employee’s treatment while they are fighting for their life, in my opinion, is a cruel and unusual practice.  There are alternative options that would not produce such damaging consequences.  I felt like a fool for placing my trust in this person’s word when I was assured before I left on sick leave that this wouldn’t happen.

Days after initially receiving the news of my dismissal I would learn the extent of how this turn of events would affect my medical insurance.  By the end of the month I would no longer have coverage for my medical needs outside of the HCV treatment drugs and even this coverage will cease within 6 months.

  

Although I was relieved and grateful that I would be okay re: the HCV treatment coverage, I also needed to consider how I was going to continue covering the costs for the acromegaly treatment and other drugs being prescribed.  And then there is the dental work needed once treatment is completed. I am in serious trouble. “How can I possibly cover thousands of dollars per month in pharmaceutical bills?” “How will I possibly cover the monthly premium of a new insurance policy?” 

It took me awhile to move past the shock.  When I snapped out of it, I went right into damage control.  I needed to be as quick and aggressive as this treatment.  People rallied together on my behalf and worked with me.  I couldn’t have made it through without them.

The Pegassist Drug Program also stepped in to lend a hand.  They have proven to be an irreplaceable support through all of this.  They also took care of the application to Trillium requesting full coverage (not just the previous 15%) for the acromegaly treatment and other prescribed drugs.



 

“Treatment does not afford its patients the energy needed to fight these avoidable battles.”

One fire out and in no time another popped up. News came in from the pharmacy that the status of my medical insurance coverage was coming up in the computer as 'discontinued'. “How could this be? I was told I had coverage until the end of the month for the acromegaly treatment and other prescription drugs.” 


After using up a great deal of energy and resources, along with some creative thinking with the pharmacist, phone calls and a meeting - an administration error between my former place of employment and the insurance company was uncovered.  With the cooperation of both parties involved the mistake was eventually corrected.  The domino effect this kind of slip-up creates is preventable.  Treatment does not afford its patients the energy needed to fight these avoidable battles.


 

Each day I remind myself, “I will get through this and things will be more than okay. Nothing is permanent.”

Regardless of whether the news is the loss of someone we love, a career ending, or a relationship changing – life goes on and death will remain a fundamental part of it…and then again so will rebirth.

Note: Please refer to November 7th, 2012 posting for updates.


Respectfully,

Deborah