Category Archives: HCV

Hell-O Again!

(May 25, 2014) Almost two years later I shudder when I look back at my blog posts from The Great Chemo Days In The Desert 2001. It’s like someone else took over my mind and wrote those words. It’s like someone else took over my body and lived that life. Something deep within erupted. I’m still reeling a little from the fall-out. Likely, it was the “Riba Rage”, so common with the chemo drug Ribavirin – a sort of angsty truth serum. But the last entry punched me in the gut with its profundity. It’s the point where I remain stuck. When I wrote it I still had four weeks of chemo to go, but felt more hope and conviction than I do now. Or was it Ribavirin false bravado?

There have been many starts and stops since chemo ended on October 30, 2011. Mile-markers whiz by me as I continue going through the motions of restarting my life. A year later, still weak from chemo but “high” on Ribavirin, I moved to a new city. (Yes! Those chemo drugs stick around for a long time!) Once here, it was an unraveling of health issues, adding new alphabet to my already thick and chunky soup. There was the IBS (Irritable Bowel Syndrome). Then came the ISC/PBS (Interstitial Cystitis/Painful Bladder Syndrome). It was obvious my nerves were haywire. And then it was one step forward and three hobbles back with three back-to-back foot surgeries. It’s been almost a year since the first one and I’m still recovering from the last one, which healing still has months to go. On the plus side, I’ve made up for a lot of lost time both inside and outside my new home in these past two months with sub-par but adequate mobility and energy. How sweet it is!

But mentally, those mile-markers were merely illusions, as I have seemingly failed to move forward in that arena. The roller-coaster ride that is my marriage recently went off track and is now free-falling into an abyss. Within a month the Master of Mixed Messages abruptly went radio silent, cutting me off completely. With a little detective work, I find that it’s been a busy month and he’s rapidly moving on with his life with a new woman, “honeymooning” in Hawaii, cashing out his family’s trust in Utah and house-hunting in Colorado. Problem is, we’re still married — tied together by assets he’s done nothing towards liquidating because his priority is him and his next adrenaline rush. He hasn’t bothered to tell me what his plans are — or that he’s even got a replacement — but he’s shirking his current obligations, that’s for sure. He missed the past two alimony payments and paid only because I had to email him twice to remind him. He was out of cell range, he said. Yeah, Hawaii is far but not Third World. And now he’s missed this last one which is shooting red flags out of a canon right about now. I fear that all the muff diving and pillow talk has choked his sense of reason and he may yet walk away from his responsibilities to me, his “old” obligation, because he’s got the new one to hide behind. Anything is possible because the game has changed completely!

But I needed that big cosmic wake-up call. It’s clear now where I stand, all doubts shattered. My Karmic lesson is painful and has come back to bite me in the heart. I’ll never again fall for the sad story of the unhappily married man who sleeps on the couch because his ogre wife is a cold fish and it’s zapping his life of all meaning and he feels dead inside … except when he’s with me. Etc. etc. etc. It’s come full circle, that Karma. But in it I see a pattern emerging and I pity the new one. Hers will be a similar life played out, same as mine, when it stops being fun or she falls ill or is severely injured.

A segment in a true crime TV show grabbed my attention last weekend and momentarily pulled my thoughts out of its spin cycle. A man meets a new woman but has an “old” one but it doesn’t stop him from running off with the new one. After three years marriage he wants out because he’s bored and met yet another new woman. So he kills the “old” new one to be with the new new one. The criminal psychologist said that people who move from one relationship to another like this man are compulsive people. “… He’s easily bored, always seeks excitement … and treats people like objects.” A parasite must have a back-up host waiting in the wings before completely finishing off the current host. Yes, it’s a veritable scum pond out there in the dating and relationship world.

All in all, it was a necessary opening of the skies above and the earth beneath me. I’ll close my eyes, release my fears and plunge into the abyss. With any luck, I can ferociously flap my dusty, weary wings and rise like the Phoenix. It must be done. Thus the blog.

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Filed under #HCV, awakening, compulsiveness, divorce, dysfunction, failed marriage, growth, HCV, hepatitis c, human nature, life, marriage, narcissism, psychology, relationships

Love Me, Love My Dysfunction … Not! When Bad People Happen To Good People.

(August 2, 2011) I’m finally ready to release the ties that bind me. It’s got to happen! Change forces itself upon me like a wrecking ball. I realize now that it smacks of insanity to continue living as I’ve lived the first half of my life. Oh, but what a force I must reckon with. Like that tightly wound ball of rubber bands people build to amuse themselves, the layers are deep and made up of many parts, colors and textures. Peeling away at them seems endless. An occasional *snap* of a resistant layer of the bouncy ball sends me yowling in retreat. I get knocked down. I get up again.

At 18 I was out of the nest, escaping the responsibility my family thrust upon me after the death of my first stepfather when I was 13. As the rational thinker of the brood, I had an uncanny knack for finding solutions to problems. However, my attempts at rationality were fruitless. I got chided and criticized instead. I watched my family get caught in the web of dysfunction that haunts them to this day. Back then, I bought into it a little. Why me? Why was life so cruel to me?

Though I lived in fear of someone pulling the rug out from beneath me while out on my own, deep down I knew I was responsible for creating my reality. (I attribute it to all that Nietzsche I read at the end of high school.) Granted, I wasn’t happy with the cards life dealt me. When I was a child I was at the mercy of the actions of others. I didn’t have that “solid” foundation that others grew up with. I acted out. I saw life as pointless. Always an uphill battle. Little did I realize then is that this sort of dysfunction is more commonplace than not. Some of us are better at building illusions than others. We’re all living lies to some degree.

In counseling a few years ago, where I was given the task of “fixing” myself to save my marriage, the therapist told me that a lot of my behavior was “learned”. There was insecurity, leading to jealousy. There was victimization, leading to a self-imposed loss of control. And then there was guilt — anger turned inward — for what, I don’t know. Was it because I failed the impossible expectations? Was it my inability to save everyone from their harsh realities? Was it because I wasn’t the perfect little child, whatever that was? Over the past decades I mulled these thoughts in my mind countless times but never wanted to take pause to look at the truths they revealed. It’s not like I want to blame the parents. You only glean so much mileage out of that one. It’s up to me and me alone to realize, deal, make right and move on. I had to quit playing the martyr, reject responsibility for situations not of my doing and stand on my own two feet. This means for some harsh words, thoughts and analyses — harsh only because the truth hurts.

I have to undo all the silly expectations I had in life. There will never appear a knight in shining armor who will swoop me up and save me from all of this. There’ll be no big hand from the sky that reaches down to pat me on the shoulders and say, “There there. You’ve been through a lot. None of it was of your doing. With one fail swoop, I’ll make all the bad disappear now.” And really, I can only gain so much playing the victim. As a life plan, it’s a dead-end. A line from Naomi Judd’s “Breakthroughs” book, she says, “You’re allowed to be the victim only once. After that you’re considered a volunteer! Making better choices can make you a victor.” (Thanks to my friend LP for sending it to me! Take a peek at Naomi’s book on Amazon!)

In fact, many of the old clichés pop into my head during my downtime. We’ve heard them over and over throughout life but the words have no meaning until we’re forced to ponder their depths. “To thine own self be true.” Yes, I must love myself. I can’t be a good friend or lover until I accept myself, warts and all. “You can lead a horse to water but you can’t make him drink it.” No, I’m not responsible for any family member who repeats a cycle of dysfunction over and over. Whether an addict or another “helpless” victim, they make their own beds and must lie in them, just as I do. I love them. I wish them well. I pray they find it within themselves to take responsibility for their own actions and decisions. I help in whatever small way I can. But frankly, I’ve got a lot on my plate these days. I get no help. I ask for none. I expect none. I gave up on being rescued decades ago.

But tell me, why must we wait until we’re 50 and made a shambles of our lives before we figure it out? Why must we be put down by a disease before we slow down and see the truth? Why must we have a big tragedy, loss of life, home, loved ones before we see life for what it is — a series of decisions made by us and mainly us? I should’ve taken heed to this wisdom 20 years ago. But things come when they’re meant to come. The first half of my life I found it easier to drown my sorrows than deal with my reality. I see now that how I respond or not respond to what’s before me is a true indicator of what drives me. Am I a quitter? A victim? No! I know a complete 180 in my thoughts and actions is what’s needed now. Why, though, do rational thinkers get written off as cold and callous? Simply because people like their illusions. They’re used to them. They don’t like it when you tell them (a line from a recent Sears commercial): “I hope you brought your umbrella, ’cause it’s raining cold, hard facts up in here.”

Medical Update: Mom is recovering at home after a week in the hospital from her laparotomy. Prognosis is good. After researching my condition of dropping HGBs (hemoglobins) and RBCs (red blood cells), I found that national protocol requires a blood transfusion if your HGB level drops to seven (7). My gastroenterologist may have a protocol for what becomes dire and needs some sort of intervention, like, say, a HGB level of nine (9). I won’t find this out until I see him on August 26. The doctor who is supposed to cover his patient load was going to make me drive two-and-a-half hours to see him for 10 minutes to tell me this. Oh, yes, and I will complain on the 26th when I see my regular doctor. In the meantime, I have a blood draw on Monday, August 8. I’ll do what I did last time and have the results released to me from the lab itself. I also found in my research that my elevated Mean Corpuscular Value (MCV) indicates a Vitamin B-12 deficiency (eHow’s MCV signs, symptoms, remedies page.). I now have liquid B-Complex and liquid B-12 to hopefully counteract that. Unfortunately we must be proactive in our own care because of our insufficient wealthcare system.

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Helpless In Hell: People Who Need People Who Are In Need Themselves Aren’t The Luckiest People In The World!

(July 27, 2011) Can I help but feel a bit overloaded when life piles one too many crises on my plate at one time? Monday night, alone again (naturally), I was readying myself for the weekly chemo shot (number 11 out of 24) when I got a rapid fire of 2 phone calls and a text from my mother’s friend and her daughter, respectively. The text read, “Call your mom’s cell ASAP!” I called and her friend answered and said she was in the hospital with my mom who’d gone in earlier that day to her Kaiser® facility complaining of severe pain in her abdomen and awaiting a CAT scan. She’d went alone, thinking she’d be in and out in a couple of hours and instead wound up being admitted to the hospital for further look-sees. After two days of hurrying through financial assistance and other insurance authorizations, the result was an emergency laparotomy. They were able to remove her gall bladder (because of a giant stone) and release the adhesions (scar tissue) that were obstructing her intestines. The nurse told me that major surgery was possible to remove obstructions but they’d hoped all could be remedied with the smallest incision of the exploratory laparotomy. The risk is that my mom suffers from rheumatoid arthritis (RA), an autoimmune disease, and healing is slow to impossible for autoimmune people so major surgery is a last resort. The drugs she takes – methotrexate (Methotrexate Wikipedia Page) and prednisone (Predinose Wikipedia Page) — are brutal and toxic for her liver. She tells me it’s the difference between taking pills and being able to move and live life or not taking pills and lying in bed in pain.

I relayed updates of my mom’s condition via text to my cousin in Europe, who then passed the word to her mom, who then passed it on to the rest of my aunts and uncle. She’s been able to talk to one of her sisters a couple of times already and that’s got to help her frame of mind a little. I talked to my brother in the island state. I talked to mom’s friends. And I talked to nurses. The female surgeon called me at 10:30 last night, post-surgery, to inform me of my mom’s good prognosis. I was able to sleep well after the news. What a relief! My mom had told me pre-op that she was deeply terrified. Secretly I was too. The last time, just a few years ago, a family member went in for a hernia-type surgery and died post-op. That was her husband, my step-dad.

My hands tied, my mind and body went numb. I couldn’t just get in the car and drive the three-plus hours to see her. I felt helpless and useless. I’d just read a line in Naomi Judd’s book, “Breakthrough Guide” that “emergency = ’emerge’ and ‘see’.” What is it that I’m supposed to emerge and see? That I am truly helpless now? Alone? Yeah, I got that one. It’s ruthlessly been driven into me for the past few years. I barely keep my sanity and well-being together here, married to a man whose abandonment in my greatest time of need brings home an ugly and unbearable truth: It can’t go on like this. It’s going to eat me up from the inside out. It’ll only get worse as time and age progress. I’ll remedy the situation when I am strong enough to do so. Hopefully by then time will bring clarity, solutions. I get lost in trying to figure out the riddles.

All this came down as I awaited news about my own declining health conditions on chemo. I’m getting no answers. At last week’s Month 2 visit to the gastroenterologist’s office, I’d gotten news of my past two blood panels and it wasn’t stellar. On July 11 my red blood cell count (RBC) was pushing at the low number of the “within normal limits” (WNL) range. The specialist ordered an immediate test to see if my numbers were still dropping. If so, we’d have a problem on our hands. We talked more in-depth about the mental and physical side effects I was experiencing. After scribbling notes, he asked in his Russian accent, “Can you handle it? I know it’s rough. You are a strong person. You’re doing good! I don’t want to give you anymore pills [for the mental stuff]. … They are bad for the liver.” We both mouthed those last six words together. Then he said it was unfortunate I wasn’t getting the integrated care part of the treatment because I needed it badly. “That’s all they deal with is hepatitis C!” He shook his head and threw his hands up and let them crash-land on his lap.

What went unspoken is that he’s overloaded with patients and can’t give me the individual care he’d like to. This was the first I’d heard of the denied referral. I’d wondered why the integrated care people gave me the impression that they’d have my back through the treatment process when showing me how to give myself chemo injections on my first and only visit. It was such a warm experience I’d expected a call the next day to see how I’d managed my first injection. Nothing. Week one passed into week two and still nothing. I thought, “Wow! They really suck! Where’s the love?” I felt abandoned, yet again. When I finally called them to ask about the timing of the blood draws, I detected the slight rejection. It’s that tone and vibe I can feel even over the phone. A person’s whole chemistry and demeanor changes when they want to let you down easy. The awkward quiver in a person’s voice is that of pity and annoyance as they awkwardly let you go.They want to seem compassionate but at the same time say, “I can’t talk to you. Your insurance isn’t paying for this. Time is money. Blame the system. Good luck!”

On a local level, my general practitioner’s office won’t return my calls. I called Friday to warn them of Monday’s impending blood draw to test for possible severe anemia and wanted to know if they were following my treatment and aware of my declining blood values. I wondered also if they were following my care and progress. I got no reply. I called again Monday afternoon to see if my early morning blood results were in and to find out if I was indeed clinically anemic. No reply. At 8 a.m. I left a message with the specialist’s office. The medical records person there called me back, got the phone number of the blood lab, got the report faxed and then called again to tell me my specialist was out for a month and another doctor would call me back to discuss the results. I asked her if the RBC number had gone below the range. She couldn’t tell me. Only the doctor could. Two days later, I have yet to hear back from them. Apparently, what keeps me from getting a simple “yes” or “no” answer over the phone is a sort of insurance tug-of-war game — my health be damned!

UPDATE (July 28): Old-school faxes save the day! I called the blood lab who referred me to medical records who faxed me a release of information form that allowed them to fax my July 25 blood results. All values have plunged and I’m now officially anemic. The specialists office just called me back and another doctor wants to see me. They won’t tell me why. I have to figure out who can drive me the two-plus hours to see him. Once again, the ball is in my court and I haven’t a leg to stand on.

I’m finding out more about my mom’s situation. She’d gone into Kaiser® in extreme pain. They gave her pain pills, took an x-ray and said, “We see nothing. Is there someone who can take you home?” Something inside her caused was forceful where she is usually passive and docile. She said, “No! I’m not going home with this pain! Something’s not right! I need help!” Her insistence forced the CAT scan that saved her life! Now her hemoglobin count is points below my lows and they are talking blood transfusion.

And somewhere out there, that apathetic husband of mine is proving his physical prowess by leading his coworker and brother and niece down a class 3-4 river, oblivious to the falling apart of the home life he wants nothing to do with anyway. I’ll update when I know more.

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Chemo & The Places Your Mind Will Blow: Beer & Loathing On A Front Porch In Desolation Desert.

(July 18, 2011) Ten weeks into chemo and not even half way through it yet, the accumulative ill effects I’ve heard about are becoming apparent. The pressure builds like that of a volcano just looking for that hole to blast through. All problems magnify like the annoying buzz of a flashing neon sign: Open All Day and All Night. My jaws clench and my ears ring much of the time. The top of my head feels as if it wants to blast off my head and splay brain matter all over the place. Throw in a sad existence in a dead marriage where I’m left to cope with the surges of chemo-induced anxiety attacks alone, I begin to see where one might be driven to that major red-flagged side effect of this treatment: suicidal tendencies.

As bad as this sounds, I’m not going anywhere! I have no intention of ending my life. Yes, at times I’m frustrated and in despair. I have no concept of my reality and what my future holds. My dreams seem overly ambitious and I feel that I’ll return to my sad pre-illness existence and all struggles will be for naught. I am nothing near suicidal. Quite the opposite. I have a pressing new conviction to finally live my life on my terms. It’s a concept not quite within my reach just yet.

The building pressure that each new Monday night injection brings ups the ante against my sanity. I have no outlet, no place to go to feel a part of the bigger picture. No, not here. The vibe is dead and the place culturally devoid. This is where lost souls come to die. Once people experience the undeniable brutality of the people in this unforgiving desert hamlet many become alcoholics, tweekers or mother’s little helper addicts. Yes, even the do-gooder cheerleader moms aren’t spared unless they brainwashed by their small-minded churches.

I felt like busting loose Saturday. Though my balance was a little iffy, my head abuzz and my ears a-ringing, I had to get out. I go days or a couple of weeks without seeing nor speaking to another human being. There are days that I must audibly eke out a word just to make sure my voice still works. My intention that day was to go to my usual family run old hardware franchise that sells Science Diet® cat food and then drop into my friend’s thrift store to visit and look at more stuff I didn’t need. Some of it was about getting things done and some of it was about mixing with the public. The experience in the hardware store parking lot was a foreshadowing of the surreal day I was about to have.

I recognized a customer while in the store but couldn’t remember from where. It was while I was packing away my purchases that I’d figured out where I’d seen the man who was my age: on a movie set a decade ago. When he came outside I said, “Hey! You’re such-n-such, aren’t you?” His obvious but nonchalant stares in the store weren’t imagined because once I opened the door to conversation he was all over it. He asked if I was still married to the fireman. I said, “Well, yeah, but it’s a mess. It’s all a mess now. There’s a lot of uncertainty.” Wrong thing to say though this truth-serum chemo brain now tires of pretending. The man saw a window of opportunity and attempted to enter further. Before long I had his phone number and address. If I’d stuck around another 15 minutes I’d have had some afternoon delight and his house key too.

I told him I was going through chemo for HCV because I thought, certainly, he must see that I have the buzz-cut hair of a marine, though I must have looked pretty stylish in my hat and scarf ensemble. I could see the wheels in his head clicking. His attempts at slyness was underestimating my ability to cut to the chase of most interactions. He asked how contagious HCV was, how it’s spread and if it was something that required a condom when having sex. Yes, I told him. Probably so. I’m not sure what happens when I’m in remission but while it’s active, yes. I thought it odd and switched back to less invasive personal talk. Besides, it wasn’t sex without love that I wanted or needed. Empty sex was easy to get in this town. If I were so inclined I could go to any bar in town and have sex. No. It isn’t sex I need now. Besides, there is no one in this town I want.

When the conversation was winding down because the heat was beginning to make us sweat, he said, “Call me.”

“Oh, I don’t know. I doubt I will,” I said. “I am still a married woman.”

He persisted. “Well, it’s an offer, you know, if you need someone to talk to. I’m there with my nice house on 2.5 acres — just me and my two big dogs — if you ever need a quiet place to hang out.” Ahem. I have a quiet place to hang out, I thought.

Some middle-aged divorced men almost hover too much like a wet blanket as they seek every day to fill the void left by the woman they’d spent their young years with. Their divorces are nasty. Some are left bitter and almost destitute. Many cruise internet social networks and adult chats and single friends networks and troll. I’ve never done any of those things. I know people both male and female whose social network and/or dating profile pages are complete opposite representations of the people they really are. Why let more bullshit into my life? I’m done living the lie of being pigeonholed into someone else’s idea of life. I’m done dealing with jealous ex-wives and their resentful children. I’m done trying to fit in where I don’t belong.

My friend wasn’t at her thrift store shop and texted me that she was running late and would be there soon. “Soon” was too relative a term. My energy level was fading fast and my window for the day would disappear. I texted back, “OK, I’m going to the cig store”. While there I battled the urge to buy beer and lost. I walked out of the store with two quarts of Sierra Nevada Torpedos. Bombs away, indeed. The pressures of our lives unleashed with the “Pffft!” of the beer cap. We did what any sensitive and seeing angsty girl at the dysfunction junction of desolation desert would do — we scared away door-to-door proselytizers as we smoked cigarettes and drank beer at noon on her front porch.

I justified the stupid decision by saying to myself, “Well, if I’m going to feel like shit everyday I may as well have a reason.” But my mental health and body’s physiology can’t take it. When I choose booze, I lose. I’m allergic to the stuff and now with compromised health and a weakened immune system the stuff was particularly dangerous. In the throes of our boozy good time, I wasn’t seeing that. Here we were: one 20-something single mom with a military ex-husband who abandoned his daughter without looking back; a 30-something neighbor girl fighting a beater ex-husband who’s immune to small-town “Boss Hog” laws; and me, the barely-50 girl with a lot of bones to pick about their situations, which I could relate to, and those of my own. One beer led to more. Eventually the 30-something girl bowed out. Us remaining two talked and talked, more loudly as the stuff hit us hard in the desert heat. I released, that’s for sure. It felt like I was getting stuff off my chest but the reality was that I was bringing in new stuff. The marathon finally ended by 10 p.m. after a couple of hours pool-side at my house.

The next morning I woke up feeling racked and regretful … and really stupid. My voice was hoarse. I thought, OK. Do I need anymore verification as to why I should avoid alcohol and why it’s counterproductive to my mental stability — not to mention physical health? It’s not hard for me to avoid booze when I set my mind to it. It’s even easier when I live in a place where there is life, springing eternal, even if my life seems temporarily dry and empty. But what about release? How do I release the mental ties that bind while in this place and still save face? How can I hang on to hope when there is no sight of it, not even a glimmer? The alternative has got to be real for me. It has to have substance. Sticking my head in a new age bubble is as pointless as sticking my face in a beer bottle. But the bottle brought it all to the forefront. I need to find the answer. I’ll never stop looking for the answer. I wish just once the universe would go easy on me and throw me a bone of clarity rather than the usual bones of contention. I guess that’s what growth and enlightenment is all about.

Doctor Update: Wednesday is my “Month 2” visit with the gasteroenterologist. This will be an important visit since there are two recent blood draws to compare with the first — one being the special full blood chemistry and HCV viral load count he ordered between the two regular monthly draws. I’m curious what he will say about my angst issues. If he has to prescribe a pill, it should be a light does of an old school tranquilizer, like Valium®. I can’t take any of those frightening newfangled psychotropics. My reaction to them is almost worse than a night of boozing. If that’s my only alternative, they may as well just shoot me right there in the office.

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Of Mice And Me: Who Cut The Cheese And Left The Stink Behind?

(July 12, 2011) The feedback I received from friends in private and on the comments here about the last blog entry I’ve taken to heart. It’s not like the harshness of my last “riba rage” hadn’t already weighed heavily on my conscience. HCV chemo treatment is chaotic mentally and physiologically and bothersome things in life become magnified. It’s almost as if I have verbal turrets. Or maybe it’s what growth and enlightenment and processing the old skeletons in the closet feels like. Chemo treatment is a sort of freaky truth serum that leaves me feeling like I just got ambushed at a surprise party when all I wanted to do was hide and lay low.

Ever since I watched my stepfather die in front of me at age 13, I observed human behavior and formed opinions early on. After his death (RIP, my man) the upheaval in the home was a bit much. No rest for us weary and traumatized remaining family members. It was a dramatic death. Everyone within a mile radius knew something was going down when they heard the Flight for Life® helicopter land in the neighborhood at 5 a.m. (I have other issues that sprang from that day but that’s an entirely different blog). When my mother and her friends returned from the emergency room hours later with a bag of his bloody clothing, I needed no words to know attempts to resuscitate him had failed and he was gone. I fell to the ground and got no peace for sometime after that — possibly years. People came out of the woodwork, ringing the doorbell and chatting with my crying mother and leaving flowers and baskets of food. Stunned but appreciative, our realities altered, we almost forgot to fulfill our basic needs. Yet, the whole scenario was a psychological overload. Some of these people I’d never seen before. I was in shock and trying to console my mother and people kept coming. I’d asked her, “Who are these people? Are they from daddy’s work? Are they neighbors?” Most were neighbors. Silent neighbors. Mysterious neighbors.

The chaos got to my mom. She was having to live the experience over and over, retelling the story to strangers. She finally said to me one evening as we fell exhausted on the couch and stared at the door and waited for the familiar key noise of my step-dad returning home from work as we did every night for quite some time, “Why can’t people be concerned for you and come around and be kind when you’re alive? Why come after the fact to leave flowers on the grave?” The statement stuck like glue in my wounded mind. It reminds me now of the hundreds of live news broadcasts set in front of flash-mob novena candle memorials left at the site of some person’s tragic death. When I see those I always hope the neighbors treated the family decently before the tragedy.

It always to me that humans were a failed experiment because of their propensity to run from others when things got bad. Multifaceted and deep-seated as this condition is, I never stopped trying to analyze the whys behind it. There are those who fear another fellow’s illness will rub off on them. There are those who don’t want to feel obligated to help out a weaker fellow. There are those who stick their heads in the sand when things get ugly because they like their new-agey denial bubble. But I wondered if went even deeper, like animalistic limbic-brained stuff that drove people to cast out the weak among them. This is what I hoped was not the case for my being cast aside because my weakness is only temporary but my memory is not.

The subject of abandonment brings to mind Abraham Maslow’s intriguing 1943 theory, the human Hierarchy of Needs, represented in simple form as a triangle. (A visual of Maslow’s Triangle) To me, the sad part about Maslow’s pyramid is that the general populace, for one reason or another, seem stuck in the 2nd or 3rd tier of the climb to self-actualization. It’s like we’ve created a selfish, empty society of users and consumers. On a grand and worldly scale this is a human fail. Looking out for number one. If you think my assertions are hogwash, consider that “60 Minutes” just days ago reported that there are currently 9,000 homeless Iraq and Afghanistan war veterans. They suffer unimaginable mental and physical damage and have been cast out to fend for themselves, abandoned by a society who doesn’t like “broken” things.
(CBS News: 60 Minutes. Air date: 7/10/11). If that wasn’t enough ugly, I also caught this PBS weekend news special a couple of weeks ago explaining the stigma and discrimination against our returned war veterans (KCET SoCal Connected “Vets For Hire”, originally aired 11/10/10). One man’s “flag-waving mentality” comment took me aback, as I’ve uttered the same sentiment almost verbatim. I live in a town where the main industry is creating weapons of mass destruction — where jet noise is “the sound of freedom” (yes, these words have actually been uttered in our city council meetings) and military might reigns supreme.

Animals live in the limbic (reptilian brain) mode, seeking food and shelter on a daily basis to stay alive. I don’t hold that against them. They harbor no malice or hatred. When I was entering my 20s I hung with a crowd of small-time scammers whose mantra was “It’s a dog-eat-dog world. You gotta take it or it’ll be taken from you!” I told them I didn’t buy into that mentality. I told them it was crap. But for every one of those from my old “gang” who utter the words there are tens or hundreds of thousands more who currently believe the same. The sentiment is heartbreaking and seems more like a cop-out — a way not to take responsibility for your actions.

I meant only to shake people up with that last blog entry and perhaps force them look inside themselves. Not just for me, mind you. It’s not about me. Stop and take a look at how we treat others on a daily basis and do it for the sake of our family, friends, neighbors and all life-forms on our planet. We’ve been given a brain supposedly greater than our mammalian brothers and sisters with a supposed capacity for greater empathy and compassion. It never ceases to blow my mind that people don’t strive toward this in the truest form. Going to church and patting the ones on the back who believe as you do or putting yourselves in a new age bubble where one doesn’t allow that energy to enter one’s realm doesn’t seem like the proper way to rise above and think outside the triangle. My apologies to those I may have offended.

More on Maslow’s Hierarchy of Needs

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When The Going Gets Rough Everyone Skitters Away Like Mice

(July 7, 2011) The responses — or worse, nonresponses — I’ve received from people both in real life and on the interwebs about my disclosure of HCV stuns me, quite frankly. Really? You want to avoid me now? You even go as far as to unfollow me on Twitter? You have nothing to say? No curiosity? Not even a “Oh, that sucks! How are you doing?” I can’t imagine reacting this way to a real-life friend or a cyber-friend. It’s just not in my mental makeup to kick people when they’re down.

I thought I’d made it clear in my introduction page that I didn’t seek sympathy and that I don’t derive pleasure as one of those who thrives on the whole woe-is-me attention surrounding illnesses. Anyone who’s had any dealings with me since I’ve disclosed my HCV diagnosis and remained on speaking terms knows there’s a plethora of stuff I like to talk about. After the initial, “Hey, how are you feeling today?” “Blah. I feel like crap! I’m very drained and tired. Thanks for asking.”, our conversations drift toward the places they had before HCV — our families, hot guys, social observations, politics, travel dreams and world woes.

I wonder if the people I know in real life are banging their heads against the wall trying to recall if I’d ever bled on them or if they’d ever sipped from my water bottle. There is an undeniable stigma associated with blood-borne diseases and there is an undeniable propensity to lump all blood-borne diseases with sexually transmitted diseases. People fear the unknown. The unknown becomes understood with education! But it’s not easy changing social stigmas. People embrace their ignorance because it’s easier to do so.

HCV, the “silent epidemic”. Named so because those infected with the virus may not know for decades that they have it. But I think there’s another reason it’s silent. People who have it are silent because they don’t want to find out who their true friends are or aren’t. People who have it don’t want the pigeon-hole into an ugly social stigma. People who have it just aren’t up for having people visibly step away from them. Folks, you won’t catch HCV by talking to an infected person. You won’t catch it by even touching an infected person — unless there’s blood and you come in contact with it.

So I wondered, how can I educate people? How can I convey that it’s not just a disease that junkies living in Needle Park catch. Far be it. At the clinic where they showed me the ropes on injecting the lovely chemo stuff, the nurse told me that one of the district attorneys in that big city had just begun treatment. But that’s not enough to sway people’s opinions. I decided to put it into terms understood by the general populace and googled “famous people with HCV” and learned a few things myself. Natalie Cole? Really? Jack Kevorkian (RIP pioneer man)? You don’t say?! Mickey Mantel (RIP)? Get out! Evel Knievel (RIP)? Slap me silly! (Incidentally, the dead ones died as a result of their untreated HCV.) The list is surprising in some cases. Some contracted the disease rather innocently. Some contracted it through the means that most people think all sufferers contracted it — by being “bad” people. (Is experiencing life a “bad” thing if you don’t harm others?)

I discussed my experience of people’s reactions with a friend and she wondered if people just didn’t know how to take the news or how to respond to it. She said some of the blog entries were difficult to swallow. It’s possible. For that, I’m sorry. I know it’s a buzz-kill. But abandonment is not the right response either. Remember the Golden Rule. Is that the response you want from others if it were you? HCV disclosure laws apply to medical professionals on a need to know basis. If someone didn’t tell you they had HCV you’d most likely never know they had it. It’s not leprosy. Anti-discrimination laws protect HCV sufferers on the job. Hopefully anti-bullying laws are enough to protect a person suffering HCV stigma at the workplace. There aren’t really a lot of instances where we cross paths with another person’s blood. We need to move past the old “toilet seat” and “door knob” ignorance of the olden days. And really, we need to find those rare lost things in today’s society called compassion and empathy. It goes beyond HCV.

Famous people with HCV:

Wikipedia List Of People With HCV

NATAP’s List of Famous People With HCV

HCV New Drug Research: “Celebrities w/ Hepatitis – Judd Opens Up About Being DIagnosed”

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Go Bare If You Dare, But Unfortunately You Are What You Hair!

(June 30, 2011) It’s been a while since I’ve posted anything and for this I apologize to my three dedicated readers. I’m in week seven of the bumpy ride that is HCV chemo treatment. My life is not really mine right now. I can only go in one- to two-hour increments. I can promise nothing. I don’t even know myself what I can and can’t do from one moment to the next.

It’s panning out that Thursdays are the big mindfuck days. It’s a delayed reaction to my Monday night peginterferon injections. The mind goes to dark places so I pace around and try to keep busy lest I let those crazy runaway thoughts overtake me. I’m grateful for the few high quality friends who check in on me regularly, send me cards and care packages, give shout-out tweets to me, laugh at my silly almost hallucinatory “Riba Rage” ramblings via DMs and text messages and see that the real me is just besides myself for the time being.

Two Thursdays ago (June 16, my husband’s birthday in which he was away on a river somewhere) I finally had enough with my hair. Treatment does things to my body that resemble crystal meth use. (Bah! People pay money to feel this way?!). I break into sweats where I actually feel beads of moisture ooze from my head. It made my hair unmanageable, dirty and unkempt looking despite all my efforts and barrettes and bows. On top of that, the pretreatment color was growing out and my ‘do was looking confused as well as dirty. To add to overall discomfort the temperatures here are pushing 115F. Any piece of hair that touched my shoulders or neck drove me absolutely bananas! And it was raining hair at my house! Because the hair falls out so easily during these chemo treatments, frequent washing — much less a cut and color — aren’t recommended. Besides, I couldn’t see committing myself to the chair for two hours. I can’t commit to anything for two hours. My hair had become a frustrating lose-lose situation. So I went about attempting a self-trim.

My hair isn’t easy for the pros to cut, as it is very thick and curly and grows like a weed. It’s a blessing and a curse! The last super-duper ‘do my stranger of a stylist gave me was a cute, short, stylish cut with highlights — a huge change from my usual long ‘do. To make the style work she had to thin my hair out and upon completion marveled out loud to the other stylists at the two big piles of my hair she had to sweep up. (I call her a stranger because even in healthy times I can’t bear to sit for two hours in a chair of a shop with all those chemical smells.) So my attempt to trim my hair was disastrous, but not as disastrous as my boiling frustration level. After I reviewed my hack job with a mirror to the mirror, I decided I had to do what I’d been threatening to do for about a month now: I had to shave my head to save it.

There’s nothing like looking at the real you in the mirror with all out in the open and no hair to hide the furrows on the forehead or the chicken pox or other battle-wound scars. My peach fuzz ‘do was a shocker but felt good to my head. And luckily, I have a nicely shaped head! It took a couple of days of getting used to. It struck me how big and blue my eyes are and I wondered why I hid them behind bangs for so long. It struck me how superficial our culture had become because of the judgments we place on people about their hair. Bad people with good ‘dos are misconstrued as decent people. Good people get passed by because they don’t sport the right color or highlights. And grey hair? God forbid a woman under 65 be caught dead with it! What the heck does maturity look like these days anyway? If we buy into the advertiser’s version, it’s all about the mannequin modality. While I was visiting my cousin in Europe a few years ago she’d said she couldn’t wait until she started to show “some grey hairs. It shows wisdom and distinction.”

I had to laugh hard at my cousin’s assertion, it seemed so child-like. I asked if this was really acceptable in Europe because, I told her, “If you were in the USA and you saw your first grey hair you’d be running to WalMart for a bottle of hair color because grey hair is like the kiss of death for US women! It is OK for the men, but the women are basically put out to pasture if they let their hair go natural.” Men can grow old gracefully, but can’t let their own age and mortality be seen with a wife who is grey. Yes, even two smart girls couldn’t make sense of this one but it was the truth nonetheless.

I give kudos to Sinead O’Connor for poo-pooing convention and having the balls to show her beauty minus hair. When people see bald women they immediately assume “cancer patient”. But now I see why guys like to shave it off. It’s low maintenance. It helps keep the head cool in hot weather. And it feels damned good to the head and hand to rub it. I’ve made few public appearances but cleverly disguise my head in hats and scarves, cheap-chic bohemian style maven that I am. I’m past the point of paranoia about my no-hair appearance. And I really wanted to know what my hair looked like after 30 years of chemical treatments.

It’s grown about half an inch by now. Wiping out the last 30 years and starting anew was liberating. (They say that through DNA analysis one strand of hair can reveal every drug you’ve taken and every illness you’ve endured in the past 20-30 years). I’m curious to see how my hair will grow out. Who knows what I’ll do with it when I’m able to mess with it again. If it grows too fast in the coming months as the temperatures here approach 120F, I’ll probably shave it down again. By Thanksgiving I should have a “presentable”, feminine ‘do once again. Because, after all the hair thing is temporary like all else in life — including this illness (hopefully) and this treatment.

1-MONTH DR. VISIT NOTE: On June 24 I saw my gastroenterologist for the first time since treatment. He said my RBC & WBC values weren’t below normal although they are pushing toward it. He said he was worried about my thyroid but didn’t elaborate. He said his preference is to check the viral load at the 3rd month stage of treatment.

When I recounted my last month with him, telling him about the short-term memory loss and lack of concentration among all the other crazy ups and downs, he said, “You’re doing good! You have to stick with it! Many people can’t do it and they quit the treatment.” I told him that I didn’t see how people held down jobs because I just couldn’t see myself doing it. I have no follow-through. I can’t remember if I’d thought about doing something or actually did it and was recapping it in my mind! I’d told him that in the crazy, surreal timing of my life, the college had called the previous day to offer me my old fitness teaching job. The doctor said, “Don’t worry about that. You just worry about getting better!”

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