Post Treatment Realities

EOT, Post Treatment, "when I'm done with treatment.." While we are in the midst of treatment these phrases dangle before us like a piece of candy on a string, just out of reach but promising sweetness. I really didn't know what to expect for myself after treatment. I have read other peoples' experiences. I have read the materials provided by the pharmaceutical companies and medical professionals, which I have come to realize are Pollyannishly optimistic. My general experience throughout this process is that we all experience treatment a little differently although there are many many similarities.  In the support groups I follow often one person will ask about a befuddling symptom, certain that they are manifesting bizarre and unusual reaction, only to have a half a dozen others respond with similar stories.
To be honest I hadn't looked into the post treatment stories very thoroughly. I figured I'd cross that bridge when I got to it since life on treatment was basically best lived one day at a time. I knew I wouldn't immediately "bounce back", that it would take time to rid my body of the poison I'd been ingesting and injecting  for the past 48 weeks. I knew it would take time  to renew my body from the strain that it had endured, the anemia, the weight loss and  the compromised  immune system but beyond that I didn't have much of an idea of what to expect.
Here I am 10 days after my last shot, still not knowing what to expect from one day to the next. My energy level is improving slowly, I tend to overdo it and wipe myself out by capitalizing on the newfound ambition. My appetite is back and making up for lost time and although my mouth is still a little sensitive to certain foods, I'm finding my taste for variety is coming back. My mood has improved greatly...well until yesterday, that is.
 I had been developing pain and goo in my ear for a few days. I put off going to the doctor because I knew I'd be over there on Friday for blood work, and also because that's what I do, I procrastinate. I put off those visits to the doctor until I'm really miserable. By Friday my ear was visibly swollen and incredible painful, my neck jaw and head all hurt as well.
This occurrence  took some of the air out of my sails and seriously dampened my mood. "Haven't I suffered enough in the last 11 months?" and "Can't I just start feeling better?" "waah wahhh"
 I realized that treatment doesn't really end when you stop taking the meds. There's going to be a transitional period while I detoxify and regain my strength and hopefully my sanity. Like most things in life we hope treatment will be linear, predictable and finite; and like most things in life it is none of those.
And like all other things in life, we take it one day at a time, we do our best and we do it better with the support of others.


© 2011 Jennifer Hazard

Guest post by Anna

Hi All,
Here I am done with treatment, although still feelings the effects of Thursdays shot, looking forward to see what the future brings. I'm feeling optimistic, knowing I can't feel worse than I have for the past 48 weeks, ha ha!
 I wanted to share the link to this post by Annmarou at Heppy Countdown.  First of all she has a delightfully wry sense of humor that is valuable for anyone on treatment or puzzling with this disease. Most importantly, however, is Anna's Strength and Courage when questioning and confronting her doctor. Anna's story is a shining example of assertive self advocacy. It's so important that we remember that this is our health were dealing with and we are required to make choices that can be life altering. If our medical providers fail to provide us with adequate information, choices and emotional support, it is our right to ask for what we need.
One more note, I know it's not always easy to be assertive, to speak up for ourselves, I wasn't very good at it until I hit a certain age; in that case it may be an option to have a trusted friend, family member or professional advocate (if your community has them) accompany you to your appointments to ensure you are receiving the care that is your right.
Peace,
Jenny

© 2010 Jennifer Hazard

Eeeeee OOOhhhhh Teeeeeee

This title violates all the blogging rules of making your tile "searchable" and "drawing in the readers interest", unless of course you have experience with treatment and you know that it means...END OF TREATMENT!
Can you tell I'm just a little bit happy?
I was thinking back to when I first started out on this long bumpy fog covered road, with only bits and pieces of a road map, like something a pirate would bury, hiding its elusive treasure.  I found support systems online, The Hep C Nomads, Hepatitis Advocacy, The Liver Foundation, Facebook groups and more. I read posts from people who were where I am now, finally, blessedly at the end of the road and slowly coming out of the fog. I felt happy for them, and proud for them that they had made it through 48 weeks of basically being a stranger in your own body. But I found it nearly impossible to picture myself at that point, emerging from the place I was in, a place that felt out of time, out of sync with the rest of the world; a strange kind of limbo where nothing feels real. I could not see the end from "in there"
I read the words of encouragement from others who had made it through to the other side and even though it seemed so far away I was glad for the voices from the other side, the hope and strength they offered. I will always be grateful for everyone who has been with me on this journey. People in other countries who I have never met in "real life" who have given so much of themselves when they were so sick it was hard to even sit at the computer long enough to post. This is an amazing community and I intend to stick around to give back what I've been given, not out of obligation but of gratitude and great respect for everyone who travels this journey together holding hands through the fog.
I think I'm going to go shed a few tears now :)
Thank You all so much, words cannot describe what your support has meant to me.
Peace and Love to you all!
Jenny



© 2010 Jennifer Hazard

My walk to the store as a metaphor

Wind chill minus 9, snow piled 3 to 4 feet high in some areas and I’m out of food and cigarettes. This means a walk to the store is inevitable. Here in the final weeks of treatment and have so little left to give, physically. I become exhausted and achy after the most routine activity, doing dishes, cleaning up around the house, taking the dog out. Needless to say I’m not thrilled about the thought of this walk. I postpone for an hour then realize the sun is heading west. It will only be colder after dark, and the patches of ice will be undetectable. So I “buck up”, eat some Cheerios with ensure and bundle up warmly. My son and his dog accompany my as we set out on our arctic journey. The dog, Mitzy, is half husky and tolerates the cold, my little dog; a Shih-tsu/terrier mix stays home. When I first step out into the frigid air my muscles tighten, I brace myself. A block from the house, I’m short of breath and want to sit down. Since I know that’s not an option, I take a deep belly breath and pace my steps. My muscles start to relax. I can feel my blood flowing I start to adjust to the cold (as much as anyone can at that temperature). The corner store is only 4 blocks away but on some treatment days it feels like miles. By the time we’re halfway there I’ve got a decent pace going, my son and I are talking and laughing, Mitzy is happily trotting along picking up scents to see who’s been around.

I hang in there quite well and although the sun is sailing toward the horizon it is bright and feels warming. The corner store is a fairly typical urban corner store. Narrow aisles are lined with cluttered shelves containing products arranged in no particular order. If you can find it, you can fulfill most of your basic needs whatever they may be. Along with milk, bread and basic family needs like diaper, toilet paper, 7 day candles and mouse traps you can find herbal “all night long” potion, rolling papers, whatever clever novelty gift is being used to make crack pipes and pretty much any kind of liquor you can imagine. It’s always an adventure in cultural irony.

By the time we get home I’m tired, but it’s a good tired. The kind of tired you feel when you’ve accomplished something, not the kind of tired you feel when you’ve been lying around the house with no motivation or interest. I know that kind of tired all too well lately. I realize I enjoy the other kind of tired. I appreciate it.

I know a four block round trip walk isn’t exactly Olympian, hell I used to walk miles a day no matter what the weather; but everything is relative. Today overcoming my resistance “bucking up”, doing what I had to do and enjoying it felt like a Gold Medal achievement.

© 2010 Jennifer Hazard