Getting Through the Hard Part of Hepatitis C Treatment

The Uphill Part of the Journey

A weekly injection.  12 10 pills taken on a daily basis.  A treatment I give to myself in the comfort of my home.

Hepatitis C treatment might look easy on paper, but make no mistake, this is a real-life home version of chemotherapy.  Yes, I said chemotherapy, as in cancer treatment.  And yes, I am correctly using this word per the broader definition of chemotherapy that most people have forgotten about:

treatment of an ailment by chemicals, especially by killing micro-organisms.

In addition, my home Hep C chemotherapy causes some of the same side effect that cancer treatment does, like: suppression of red and white blood cells production, increased susceptibility to infections, fatigue, weakness, changes in taste and smell, changes in appetite, nausea, vomiting and diarrhea, fever and chills and hair thinning.  (For the complete list of side effect, head over the the HCV Advocate website.)

Ribavirin: The Red Blood Cell Destroyer

Truth is, I have been experiencing, at one time or another, all of the side effects I have mentioned in the paragraph above.  Thankfully, they have mostly been mild to moderate and manageable.  That is until I was confronted by the red demon anemia...

My pink "girl power" ribavirin pills are a powerful but non-specific antiviral drug.  This drug also suppresses bone marrow production of red blood cells; one of its most common side effects is something called hemolytic anemia.  Ribavirin destroys existing red blood cells and impairs the production of new red blood cells in the bone marrow to take their place.

Unfortunately for me, this kind of anemia cannot be treated by taking iron supplements or eating iron-rich foods, since the problem is not my body's ability to make red blood cells due to a lack of the necessary building blocks.

In three weeks, my hemoglobin, the protein molecule in red blood cells that carries oxygen to the cells in my body, has dropped from 13.5 to 8.5 gm/dl, a 37% decrease.  As a result, I have been experiencing shortness of breath, cold hands and feet, increased heart palpitations and devastating amounts of fatigue.  Because the drop in my hemoglobin has occurred rather rapidly, I have experienced significant anemia-related symptoms quite quickly.

More than anything else, the resulting decrease in my blood volume has made my Postural Orthostatic Tachycardia Syndrome (POTS) symptoms horribly worse.  I have been closer to passing out when I go from sitting to standing than I ever have been prior to Hep C treatment.  My pulse rate averages between 100 to 110 range at rest, my blood pressure has dropped as low as 100/66 and there are whole stretches of time where I feel so unwell I can barely move around the house.  Sometimes crawling seems like a better option than walking! 

But I was prepared for this to happen.  I called my neurologist at the Mayo Clinic and he told me that anemia and the resulting drop in blood volume would make my POTS worse.  He prescribed a steroid medication called Florinef to counteract the effects of the anemia, a medication that my liver specialist finally agreed to letting me take on March 12th when we learned my hemoglobin dropped from 13.5 to 10.5 gm/dl during the first two weeks of treatment.

Taking this medication isn't without some risk, especially if I get an infection and my immune system is compromised (more about this next week when I write about Interferon: The White Blood Cell Destroyer.)  It isn't a prefect solution, but it does make it easier to move around the house and attend a medical appointment...

Getting Serious About Side Effect Management

So I was faced with my first serious conversation about treating serious treatment-related complications this past Monday.  The topic of the day was all about anemia.

Some of the first words out of the nurse practitioner's mouth were "blood transfusion" followed by cancer clinic, which happens to be where Hep C patients are sent for outpatient blood transfusions.  And the cancer clinic she mentioned?  Why it was the same exact one where I was seen 24 years ago and diagnosed with leukemia.

However after the doctor entered the room, "dose reduction" of the ribavirin from six to four pills a day was the course of action prescribed.  Luckily for me, I had already read about ribavirin dose reduction and how researchers have discovered that Hep C treatment-related anemia actually predicted a better response to treatment. So when my doctor suggested it, I was prepared to hear and accept his recommendation.

Beside dose reduction and blood transfusions, a third option is using an inject-able drug called erythropoietin to stimulate my bone marrow to make more red blood cells.  There is some controversy about using this drug because of black box warning issued by the FDA in 2007.  Frankly, I feel better about the dose reduction option over the use of erythropoietin, but would use this new medication if faced with the discontinuation of Hep C treatment because of anemia.

I left my appointment on Monday with a follow-up lab slip to check on the status of my anemia over this weekend.  I began the dose reduction of the ribavirin right away too--as soon as I got out of my appointment it was time to take my 3 PM medications.

Because of the anemia, going to my doctor's appointment felt like running the Los Angeles Marathon--literally!  I was so completely exhausted that I slept for 3 hours once I got home just to recover.  Thank goodness my husband drives me to my appointments, because I am so debilitated right now that there is no way I could get anywhere on my own.


While my body says the does reduction is helping, the truth is I am not out of the woods just yet.  My blood counts need to be closely monitored and further refinements to my treatment may be in order, including any of the three anemia treatment options I have mentioned above.

Trudging Through the Hard Part

So you see, the uphill part of my journey has begun.  This is the part where when the going gets tough, the tough (a.k.a. me) get going.  This is also where I hope the footprints on the beach go from two pairs to one, as someone sees I need some extra help, reaches over and carries me for a little while.

PS  This is also where I need you, more than ever, to support me anyway you can.

Want to be a member of Team Selena? 
Support me during the remaining 168 138 days
of my Hepatitis C treatment!  

Learn how here.

The Girl Behind All That Lemonade

Dale Carnegie said: "When fate hands you lemons, make lemonade."

Sure, there are a bazillion other versions of this quote.  The most memorable one that comes to my mind at the moment is: "When life gives you lemons, hand them back and ask for chocolate instead."

But let's not kid ourselves here: the lemons life sticks us with are not exchangeable or returnable.  Period.

And we might all get them, but certainly not in any sort of equitable distribution.  Which probably accounts for the mountains of them that have shown up on my doorstep so far in my lifetime.

So what do I do with all those lemons?  I have made lemonade of course: lots and lots of delicious lemonade.

I've learned to cope, adapt and change.  I've learned to smile through my pain and hide my tears when life feels more like a punishment than a blessing. To deal with all those lemons, I've transformed myself into the ultimate super trooper.  Heck I've even adopted the motto "Life is not in having and getting, but in being and becoming." (Matthew Arnold)

This is all fine and dandy, but it also begs the question, 'Who is that girl behind all that lemonade?'  I mean, I don't walk around 24/7/365 with moonbeams sparkling in my eyes, rainbows shooting out of my ears and a glass of lemonade in my hand.  I'm not always smiling and putting a on happy face...and some of those lemons do wind up smashed on the kitchen floor (among other places.)

So let me get real.  Here is a peek behind the lemonade stand at three of the more grittier themes that are also a part of my life.

Disappointed

If I am going to be really honest, one the first things I need to admit is that I feel disappointed.  I'm not living the life of my dreams and that is quite a letdown.

At the moment, I've kind of put dreaming on hold because it brings me even more disappointment, and who needs that, right?  I'm strictly living life one day at a time, because it sometimes gets too overwhelming to think about life with chronic illness in bigger chunks that that.

Sure, life disappoints all of us on some level.  But my main concern is that I am not going to be the one things I always wanted to be--a mom.  Between infertility and chronic illness, life really has made this next to impossible (despite all the spam comments to the contrary every time I write about this painful subject.)

I'm at the point where disappointment is turning into regret...

Sad

When you have a lot of bad things happen to you, you can't help but feel the loss, disappointment and unfairness of it all.  It hurts like crazy!  And who wants to have to feel like that, right?

Sure, you can ignore it, distract yourself from it, even try to deny it.  But sooner or later it catches up to you.  Then you must decide if you will allow it to take you down into a black, bottomless abyss or chose to face it, feel it and figure out a way to keep living your life anyway.

When I say I am sad, what I am really feeling is sorrow.  Sorrow is a feeling of deep distress caused by loss, disappointment, or misfortune.  Sorrow has become part of who I am fundamentally.  It's all those scars while I've been living my life anyway.

By the way, just because sorrow is a part of my life doesn't mean I don't also feel joy too. In fact, philosophically speaking, one might say that to experience true joy one must also experience sorrow.  Either way, being sad is not the same as being clinically depressed, which by definition means you can't feel joy.

So don't send me referrals to shrinks or leave me recommendations for antidepressant medications.  Well, at least not yet... 

Unfulfilled

I haven't worked in seven years and, wow, that is a really long time.  Boy do I miss it too.

When I was working I felt like I was on a path filled with accomplishments.  I had a career mission, complete with all kinds of objectives and goals.  I was getting things done every day, week, month and year and I had something that was tangible proof of it too: my resume. 

In the last seven years I really don't feel like I have accomplished much.  Sure, I have been taking care of myself day in and day out.  I've developed some expertise in the self-help techniques I use to do just that too.  But it's been an exercise in repeating the same goals and objectives over and over again.  Sounds pretty boring to me.  Plus I'd be hard pressed to create a resume with that kind of experience.

Most of all, I feel like I am floundering.  Or maybe it's more accurate to say I currently feel like I'm squandering my time here on Earth.  I mean, I believe that we all have some kind of purpose here and I am definitely feeling like my mission has run into some serious health-related roadblocks that are preventing me from fulfilling mine, whatever exactly that is.

Which leads me to my next point--I'm not sure what my purpose is anymore.  Or perhaps I just haven't been able to figure it out because I have been so darn busy just trying to take care of myself.  Talk about the daily grind...

Some Final Thoughts

Another truth is that I have been living with serious illness and its aftermath since 1988.  That's 23 years.  That's a lot of time...

Some of this time was spent sitting in therapists' offices talking (and talking and talking) about all the crap that has happened to me.  I've had a lot of time to process these issues.  Along the way I have been in denial, angry, freaked out, livid, heartbroken, anxiety-ridden, enraged, devastated and, yes, even clinically depressed. 

Yes, I've had a lot of time to get down to the root of what bothers me the most and I think that disappointment, sadness and feeling unfulfilled pretty much sum it up.  They also, ironically, are the things that motivate me to keep moving on.  I haven't given up yet on creating a life that resembles some of my reality-tempered aspirations, contains a balance of joys and sorrows and helps me discover my true purpose and ways to fulfill it. 

Funny how life works, isn't it?

I'm A Warrior, Fighting For Survival

Image by A23H via Flickr

Don't you know we got to stand up and fight. So onward Christian soldiers, onward Christian warriors. Onward Christian soldiers, onward Christian warriors. Fighting for survival, your fighting against this ya rival. Fighting for survival, starting a revival!
~Christafari Warriors

After writing my post Health: My Life-Long StruggleMonday, I picked up my copy of Life on the Other Side:: A Psychic's Tour of the Afterlife and started reviewing the appendix with the 49 life themes. After further review I feel I have identified the primary and secondary themes of my life which are respectively warrior and survival. Allow me to explain:

A warrior is described as a person who anonymously steps up and goes where they are needed to face the challenge at hand. Examples of warriors include firefighters, paramedics, police officers, explorers, teachers, researchers, soldiers and social workers. Sinply stated, my mission as a clinical social worker embodied bringing hope, resources and healing to disenfranchised members of the community.

I identified with this theme because since I was small, I wanted to help other people. For many years I thought that a career as a doctor was the best fit for this purpose. However, after my cancer experience, I discovered the field of social work and realized it was a better fit for me. As a social worker, I was able to spend time getting to know clients and developing a working relationship with them that allowed me to personalize and customize the services I provided them. Initially, I was drawn to working with people living with HIV/AIDS; from there I branched out to working with people who were homeless, severely and persistently mentally ill and drug addicted.

Though I am no longer able to pursue my career as a clinical social worker at this time, I continue to hear the call of the warrior. It has opened my eyes to the needs of other people who need whatever small help I can provide. Now I am focused on being an advocate for long-term cancer survivors experiencing late and long term effects from their cancer treatments. I strive to do the same for people living with invisible chronic illnesses, like I do, through this blog. I hope that using some of my precious yet sparse energy to create, maintain and promote this blog serves to shed light on the day-to-day struggles experienced by people living with chronic illnesses.

As I explained in my post on Monday, the secondary theme provides a conflict that must be overcome in order for one to fulfill their primary theme. The theme that best describe my conflict is the theme of survival, in which a person views their lifetime as one long endurance test. While it is true that my health problems contribute to the survival theme of my life, they are not the only crises, challenges and threats I have faced in my life. I credit learning to overcome this source of conflict with fostering my good sense of humor in the face of adversity as well as helping to redirect my energy into living my life instead of just trying to make it to tomorrow. I'd like to think that if God paid me a visit today, just to check in and see how I was doing, I'd hear the remark, "Yes, Selena, life is a series of tests and you my dear are doing remarkably well."

As to whether I have indeed identified the major themes of my life, I guess I'll have to wait for my answer until I'm back on The Other Side.

Health: My Life-Long Struggle

Image by heal and inspire via Flickr

I read the book Life on the Other Side: A Psychic's Guide to the Afterlife by Sylvia Browne several years ago. I picked it up on the discounted book table because I was intrigued by the title. I don't know if I really believe everything she has to say, but some of the concepts she presents in explaining her view of life, death and the afterlife are both appealing and comforting.

What resonated with me is the idea that we plan our lives on the Other Side before we get to life on planet Earth. In the process, we choose a primary theme and a secondary theme. The primary theme is the goal of our life and answers the question: what is my purpose in life? The secondary theme is the conflict we must overcome to fulfill our purpose. In the book, she provides a list of 49 common themes that people plan their lives around including: patience, justice, leader, healer, loner, catalyst, analyzer, poverty, survival and warrior. So, for example, your purpose might be to be a catalyst for change, but you need to learn patience in order to achieve your purpose.

To be honest, I am not sure what themes I chose for this lifetime, but I do know with absolute certainty which Option Line I chose. The Option Line is sort of like the major your picked when you went to college. The idea behind the option line is that, throughout your life, you struggle to gain mastery over this area. There are seven Option Lines: family, spirituality, health, love, social life, finance, career and family and I definitely think my Option Line is health.

I've lived several decades now and my health problems have been my constant companion. In fact, my health problems seems to have multiplied over time: one big life-threatening one in my 20s, one manageable in my 30s and a generous helping of several chronic ones in my 40s. Sylvia Browne says that knowing that your Option Line doesn't make the life-long struggle go away. The real challenge is learning how to counteract your Option Line so it will not prevent you from achieving your purpose in life (primary theme) or tackling the conflict (secondary theme) that makes achieving your purpose more meaningful and rewarding.

So learning how to live my best life despite my health problems sums up my lifelong struggle, my Option Line, in a nutshell.

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