the fog just got a little thicker

In my last post I talked about the difficulty in seeing the light at he end of the tunnel, the longed for EOT (end of treatment) date. I thought that date, for me, was in early February. Throughout my treatment I have avoided keeping close track of the timing. I know myself well enough to know that would lead me into familiar old patterns of obsession, frustration and the lovely bind of self indulgence;  picking at the wounds and wallowing in self pity for the scar that was created. So knowing this about myself, my penchant for teenage like angst, I decided to take the high road and simply get through this without minding the calendar.
Until recently that is... I'm really ready to be done with this. The physical and emotional toll is like being under a pile of rocks which each day has one more rock added to the pile. So at my last visit for my procrit shot I asked the my nurse for the actual EOT date. We had both thought it was sometime in February, but the news that it's actually one full month later was, well like having a couple of wheelbarrows of rocks heaped on the pile all at once.
To get through this, I bargain with myself, and I've been telling myself, Self, it's only a little over a month, we can do this. That day in the nurses office that part of myself I coddle and and bribe and cajole along pretty much collapsed into a pile of tears like a little kid. You know how they do it, as if their bones suddenly dissolved and their tear ducts have an automatic "drama alarm" which sets off an instant prolific flow. Meanwhile, Grown Up me ignores the kid having a fit in the corner, puts on her Mommy "everything is going to be ok face" and drags the snot faced boneless Little Jenny home.
Fast forward a couple of days and as is the course of nature the inevitable push and pull between Little Jenny and Mom Jenny gives rise to Angsty Adolescent Jenny! Ta Da!
My Therapist once described me as The Eternal Teenager. I was not offended at all, and not because of our youth oriented, plastic surgery obsessed culture. I admire teenagers, I've spent most of my life working with them. I love them for their defiance, their mistakes, their question authority attitude and their fierce quest to find themselves. Individuation, they call it, and it drives parents crazy.
One of the things that gets teenagers into trouble is they have a limited capacity to see the future, they live in the  moment, be it good or crappy. Sound familiar? Remember that fog that has been obscuring the "after treatment" possibilities? Well on that day in the nurses office the fog just rolled in a little thicker as Angsty Teenage Jenny took  over.
That's where I've been the past couple of days. Pissed off at the world. I watch the news and not only am I pissed at what I see, but I'm pissed at the way it's reported. I try to watch some videos of some of my favorite music and I realize two thirds of the musicians are dead...overdoses, car accidents you know the life.
I think I need to let go of the angst and just let that little kid cry and cry, but I'm afraid it won't stop.
I know this will pass, it always does, but for today I'm going to indulge my misery for a bit...I haven't decided how, but I don't have it in me to watch pretty little Marc Bolan and remember how his life was cut short by a car smashing into a tree. He didn't even drive.
xo
Jenny
© 2010 Jennifer Hazard

may cause, fatigue, weight loss and Existential Angst

I had my 6 month follow up with the Gastroentologist yesterday. I usually try to arrive prepared with what ever questions have been buzzing around my head recently.  I had asked ahead of time for them to count how many weeks I've put behind me and how many left to go.
When I arrived at my appointment I must have looked as vacant and vulnerable as I felt, because the nurses were especially compassionate. They  are always very caring and thorough, but they went the extra mile this time.  I've been having a few really difficult days, headaches, emotional turmoil, no appetite and financial concerns, so I was already dragging.  To add to my pre-existing frumpiness, all my jeans hang off me like some Urban teenage boy, only without the cool and swagger; quite a different view on on 51 year old white lady. Naturally first part of the visit was to get weighed, I lost five more pounds. Ironic, I've always been conscious about my weight, nearly to the point of anorexia in my younger years; but in the last year or two I've come to appreciate my middle aged body and even gave away my "skinny jeans" (thus reinforcing my pathological obsession with hanging on to nearly everything 'in case someone needs it someday') The next bit of news was that although my hemoglobin had gotten to a reasonable level, 10, after a few weeks of  'the-shots I-can-never-remember-the-name-of', it was now back down around 8. I had suspected this because I've found myself becoming more easily winded again.
So here I am at week 28 (if I was geno 2 or 3 I'd be home by now) instead my eta is sometime in January, I could figure the exact date but I'm not going to just yet.
Whatever it is it's not soon enough. My Doctor, who I do enjoy, spent about a good half hour giving me a pep talk..."more than halfway through".."you'll clear this forever"...you'll return to the old you within days of stopping treatment" with all due respect to, and belief in, the power of positive thinking....I'm well aware that there's somewhere between 30 and 50% chance the virus will return within a year or two, if not sooner and most of the people I know who have been through treatment report that it took months to feel better. Somewhere between Pollyannaish optimism and complete nihilism there exists an entire web of possibility. I usually believe in some combination of destiny and self-determination, but lately I often feel too tired, too vacant to throw my cards on the cosmic blackjack table of self determination  vs. Destiny, aka, the Dealer. For today anyway, I''m paying my respects and giving homage to Lady Luck to play a few hands for me.
© 2010 Jennifer Hazard
image courtesy of 'TheGraphics Fairy", graphicsfairy.blogspot.com/

Not The Hair!

As those of you on treatment or familiar with treatment know, hair loss can be one of the side effects. according to the Department of Veteran's Affairs, 1 in 3 people will experience hair loss or thinning while on treatment. Unlike chemotherapy the thinning is gradual and generally does not involve complete hair loss.
Fortunately I had decided before going on treatment I thought I might want to try a shorter hair cut. Unfortunately I had also just dyed my hair to a color I really liked, which involved stripping the naturally dark brown to as blond as it gets which is kind of like an unripe pumpkin. Now that the "favorite color" dye is washing out and fading I'm left with a rather tacky, brassy reddish color and dark roots. Tacky. So ended up getting it cut short, hoping the lighter parts would look like highlights or tips or whatever but I realized I'd have to go way too short to pull that off. It's not THAT bad really, and I'm glad I did cut it because my hair is quite fine to begin with and it has thinned somewhat. Other than occasionally dying my hair, I usually am pretty low maintenance. I rarely use hairspray or "Products" I rarely even blow dry it unless it's winter and I have to be somewhere, so following the hair loss prevention guidelines has been pretty easy. The cut that I have and the fine texture of my hair is such that I seldom need to comb or brush it, I can just run my fingers through it and go. Now the big dilemma is, since I've been so "good" to my hair so far can I rationalize dying it? I've recently been experiencing some self image issues along with the other emotional side effects.  I've come to realize how I feel about myself impacts the way I look and vice verse. As with my hair, I'm not what you call high maintenance girl. I do, however, have my own distinct style (earrings, scarves and unusual jackets are kind of my trademark) and I realized recently that I have really let myself go. Since that epiphany, I've been trying a little harder to be mindful of my appearance, to wear clothes that I really enjoy and that are colorful and expressive, at the very least get out of my pajamas because there are plenty of days that hasn't happened. It has helped, on certain days, but there are other days it still doesn't feel worth the effort, then I feel depressed and the cycle begins again. Blah. One thing that won't require a daily effort is my hair, I'm going to go ahead and throw caution to the winds and dye it; and hope it doesn't fall out. And if it does I  do have lots of beautiful scarves!

Hair Care Tips:
Wear caps or scarves.
Use a wide-toothed comb.
Don't pull on your hair or comb it a lot.
Don't blow-dry, dye, perm, braid, or cornrow your hair

Victorian hair oil image courtesy of 'The Graphics Fairy" graphicsfairy.blogspot.com/
For more information on managing side effects and Hep C in general you can visit the Department of Vetrans Affairshttp://www.hepatitis.va.gov/vahep?page=treat-09-01
© 2010 Jennifer Hazard

No cure for the summertime blues

It's HOT, too hot. I found out the hard way that when my nurse told me that staying hydrated will make all the difference in how I feel, she really meant it. Back in the beginning of this heat wave a few weeks ago, I had a particularly busy day, errands to run a doctors appointment, etc. I don't have a car so I alternate between walking and riding the city bus and sometimes it's necessary to walk several blocks between transfer points. I felt pretty good starting out the day, more energy than usual, and made ambitious plans. At the grocery store I proudly filled my cart with all sorts of healthy fresh foods,thinking how I am doing such a fantastic job of taking care of myself through this treatment. Yay me! What a good girl!

I don't know if it was having been in the air conditioning that made outside feel like a giant open faced pizza oven or if the temperature had really risen that much but when I stepped outside I was blasted in face with what felt like an inferno. Because of my super self care shopping spree I had two large canvas bags stuffed to the top with groceries. Ok so it's two blocks to the bus stop, no problem. That two blocks felt like walking uphill dragging a steam engine pumping heat at me. Ribavirin tends to make you feel short of breath, even without the heat and the load I was carrying. After two blocks my heart was pumping like the aforementioned steam engine, and I started to feel dizzy. The bus finally came and took me to the next transfer point where I helplessly watched my next bus pull off. Ok 20 minutes until the next bus. By now my brain must've been addled by lack of oxygen because I decided I might as well start walking until the bus came along. Somehow at the time it made sense to me that it was better to keep moving. "Nothing bad can happen if you keep moving" a desperate refrain from my younger days when my lifestyle was lived in a state of fight or flight. I walked a few blocks, occasionally stopping to rest, and finally surrendered at the bus stop, the one with a bench. By this point I could feel that my face was beet red, I was sticky with sweat, and my tongue was pretty much stuck to the roof of my mouth. I dug in the bag for something to drink, but of course, I hadn't actually bought anything cold. I settled for a warm ensure, which never before or since has tasted so good. Now I was actually starting to feel chills, despite being hot, and my head was pounding.
I finally made it home, grabbed a huge jug of ice water and some ibuprofen and fell into bed and asleep. I slept for about 12 hours before waking up to realize I was still sick. It took several days, close to a week actually, before I started feeling "normal", as normal as one can feel on treatment. I think the most difficult part of treatment for me has been accepting the limitations I now have.

The Moral of this story is, like it or not, many of us on treatment can't do the things we are accustomed to doing. We have limited physical and, based on my poor judgment, mental capacities. One thing I have learned over the years of misadventure and return to sanity is that acceptance is the key to any hardship. Once we surrender to the way things are we become much more able to make adjustments, changes and accommodations which make life much less miserable. So now I'm sitting home in front of my fan, a HUGE bottle of water next to me. I've learned to limit my activities, especially in the heat...and I make my son do the grocery shopping with me. Maybe there is a cure for the summertime blues, if the livin is easy. :) © 2010 Jennifer Hazard