Saturday, June 16, 2012

11 weeks, 7 days - How Else Do You Expect Me to Act?

There is a recurring theme happening in my life lately. Let me share the script...

Caring and understanding people: Shellie, you're not acting like yourself. I've never known tiredness or fatigue to slow you down. 
Me: Yeah, well, I'm on drugs. So I'm not myself. And I probably won't be for a while. 
Caring and understanding people: Why not?  I mean, the virus is gone, right?

Me: Even though the virus is undetectable and my liver enzymes are normal, doesn't mean I feel well. I don't feel well. I feel like crap. I'm tired all the time. I cannot recuperate with rest. What rest I do get is not enough, even when I look or may sound "good" to you.
Caring and understanding people: But you're OK right?

Those aren't the exact words I hear from others but it feels that way.  It's been emotionally difficult dealing with and accepting my new limitations and the dependency this treatment brings. But more so, it's been both difficult and awkward interacting with others - at times.

Because I'm not bald, jaundiced, bed-ridden, physically handicapped, vomiting, or "anorexic" looking, it appears as if nothing is wrong with me.*  I just look tired.  So often, even friends "forget" and don't seem to understand why I'm tired. Or they presume they can relate by equating it with routine fatigue, or the hot weather, or even pregnancy. I've experienced all of those things and I can definitively say: I appreciate their love, care, support and effort to relate to my pain. And... this is not the same.
* I'm not being inconsiderate or insensitive by my choice of descriptive adjectives. I've lived them - 25 years ago.

Then the awkwardness comes in when I don't (or can't) match their energy level.  "This is not the Shellie I know," they say.  Well, quite frankly, I'm not the Shellie you "know."  I'm the Shellie on chemotherapy - harsh treatments designed to kill a harsh virus trying to kill me.  So in order to kill the harsh virus, the drugs have to be harsh, which means they are harsh enough to kill me.  So, no, you may not recognize me, depending on the day.  After all, I'm on drugs. And drugs kill. (I'm cracking up as I write this.  There's that feisty-ness that's been missed lately!  Just so you know...)

I'm learning it's healthy for me to be as I am. I'm not pressuring myself to put forth the effort to become how others are accustomed to me being.  Now don't get all dramatic on me: I'm not behaving badly, y'all.  You know that.  I'm not clinically depressed or flat out mean or anything dramatic like that.  I'm just tired beyond tired and I have "hard" days. "Hard" days are days that are normally manageable but because of the unpredictability of my symptoms - or daily response to the meds and their side effects - this day or that day may be significantly difficult to live through. Often, it looks like a day I should be able to handle, even though I move slower through it. 

When my day is "hard," I get short of breath from simply talking, I get rest but still need rest, I don't recuperate even after a full night's sleep, I may be dizzy or slow of speech or thought, I may be sensitive or irritable to light and sound. On a "not-so-hard" day, I'd be able to run an errand or even an extra one. On a "hard" day, the only appealing thought is a pillow with my head on it, in a quiet room, with the lights off, and no movement.  This reprieve doesn't happen very often. Lately, I've had to steal those movements.  That's a "hard" day.

The experience of "I'm having a good day today" has been less frequent these last 4 weeks than the first 8.

Anyway, I thought it was a good idea to share the impact my change of demeanor may have on others.

Fellow patients: be prepared that caring people - even understanding people - may not "get" you, or may not know how to respond to you when you don't "look" sick or "sound" like you're in treatment. 

Just be accurate and honest with your feelings and don't sugar coat just to pacify them.  I need to focus on my healing, not others' responses or expectations of me.  I simply don't have the energy to manage that.  And, therefore, the healthy choice is - to not.  Duh.  Caring and understanding people may feel awkward about the "different" me.  And...they'll be fine.  Hopefully, they'll accept me as I am on a given day, because that's what they're gonna get.

Honestly, this is easier to write than to put into practice.  I, too, miss her: the cheerful-energetic-hospitable-feisty-sharp-take charge-witty Shellie.  So I can relate to the caring and understanding people in that way. She'll be back - in a little while.

Living in fear is working hard not to lose in the end. Living by faith is knowing I will win in the end. A faithful life is a free one. A fearful life is a defeated one. - Me


  1. Shell I love your transparency and I bet for you it easier for you to write this down thanb to put into practice but keep trying to put in practice. Thank you for sharing and giving me a little more insight on what is going on with you!! I love you!!!

  2. Faith is the substance of things hoped for evidence of things not seen Hebrews 11:1 Amen!!!! You Are A Walking Testimony!!! Amen!!! For God Is Able!!!! When I see you I see a Warrior!! Amen I Pray Your Healing!!! And Your Strength!!! Thank You Shellie For Always!!! Being You!!! You have my Love and Prayers Smoochies:-* Gods Continued Blessings : )

  3. Hey. I wanted to post my “thank you” to you for creating this blog. You are a very brave person. It makes a difference in someone’s life. People do not get to hear details about the “side effects.” It is a buzzword with no meaning. Flu-like symptoms- what does it mean? They say the same thing about heroin the detox- feels like flu. Chemotherapy must feel like flu as well. Thank you for sharing this information. Reading this, someone may think, “Ok, I know what to expect. I think I can do it.” Or, “Hell, no, I am not dealing with all this.” And this will be informed decision. Hope you find the way to live with it for the next 40 weeks. I cannot wait to hear the blog about the benefits you gained from the treatment. I hope you will feel better than before the treatment and fatigue will go away. Along with the Flu. :) Best wishes.

  4. You have demonstrated extraordinary courage in dealing with this treatment and you show an even greater sense of courage to share "you" on this blog and the "side effects" of your treatment. This posting serves notice to all of us who have friends and family going through situations, we can be one of the "side effects." Believing that GOD will continue to Keep You, Bertrand and the Children In His Care.

    1. Marilyn,

      Bless you for your perspective! Never thought of people as "side effects," but I get it! Your kind and understanding words are soothing to the soul.


  5. I check on your blog every now and then to see how you're doing on treatment. I'm Gotahorse on Daily Strength forum. We miss you there. We have a post called "Friday night shot club" for all that are on tx. Forum's been great lately. Everyone there would love an update from you.

    Linda in Buckeye, AZ

    1. Hey Linda!! Life has been crazy busy with school being out. It's challenging just to keep this blog updated. I miss you all at DS too! I think about you often and send up prayers. I will be back soon! Thanks for checking in on me! How are you?