It would be kind of nice if the day to day occurrences were a little less arbitrary and a little more predictable or consistent. That is a luxury I do not have, however, I can't tell the drug how to treat my body. Well, I can, but I don't think it can hear me. These days, I might get 6 good days out of a week (rarely), I might get 1 good day in a week, or anything in between. If I averaged it out, I would guess that 3 really good days and 2 super crappy days are my statistical averages, but the problem is, I'm not a statistic.
I'm offering the standard caveat before I write this next statement. I'm going to try to make it the last time I say it, because I feel like I'm sounding like a broken record, and being redundant doesn't make what I say more true, it's just annoying, so here goes:
I am not writing this to get a pity party, to grouse for no good reason or to elicit sympathy. There, that is the last time I will type that. I hope.
This last Sunday was week 21. There are 35 more to go, but who's counting? As of late, this is what Interferon and Ribavirin have been doing to me:
My white count has dropped dangerously low a couple of times. I started taking Neupogen (an injection, self-administered) once a week by Week 8. Then at week 16 it tanked again, so now it's Neupogen twice a week, plus getting my counts checked every 4 weeks. That can go up to daily if necessary (it won't), but for now, it's my Wednesday and Saturday injection. Neupogen is a genetically engineered version of a naturally-occuring hormone that stimulates the bone marrow to produce more white cells. There is also a drug called epogen, and it stimulates the marrow to make more red blood cells. I may end up on that as well, since my anemia is right on the borderline. They aren't bad, not nearly as butt-kicking as the Interferon and Ribavirin. For me, I get bone pain, mostly in the hip (the hip bones have more marrow than any other part of the body, so that makes sense), which is kind of a buzzkill, plus I sometimes get a low-grade fever the next day. It's also expensive as hell, like everything I'm taking.
Right now, I'm costing the insurance company (calculated at what they are getting billed by the MD's, hospitals and pharmacies) probably $10,000.00 a month at minimum. If I didn't have insurance or I just had crappy insurance, I can't imagine what I would do. Basically, I would probably be screwed. I can see how long-term illness can bankrupt families and force senior citizens to move into their children's basements. Then there is the time that a lot of people spend fighting their insurance companies, appealing denials of life saving therapies and at the same time, fighing serious illnesses. I've been very fortunate, I have good insurance. I've had them require my doctors to submit pre-approvals for expensive drugs or procedures before they will pay for them, but to date, I've not had one drug or test or procedure that my doctor has ordered denied by Blue Cross. I am doubly lucky, because I also have Medicare, and Medicare isn't perfect, but it's about the most seamless and effortless health insurance you can get in America. Except for the crappy prescription drug coverage, I think they're about the best health insurance an American can get. For all the talk about the evils of socialized medicine, ask these rabid Republicans, their mouthpieces on Fox News and the teabaggers that they've been riling up if they think Medicare should be abolished. The real true hardcore conservatives may say yes, but most of them will say no, either because they are already getting it and they know personally how well it works, or if they are a politician, they know that senior citizens get out and vote, and they know that if they even think about discussing dismantling Medicare, they would be run out of Washington on a rail. Now the funny thing is, Medicare is socialized medicine, and though flawed in many ways, it's the best insurance in the country, unless you're a member of Congress, and theirs is even better.
Ask physicians if they would rather bill Medicare or private insurance companies, and 100% of them will tell you Medicare. Ask why and they will tell you that they rarely if ever get denials for therapies that are standard of care therapies, they don't have to get pre-approvals and the billing is 10 times easier. You take care of your patient, you bill Medicare, and they pay you back. Payment is based on rates of reimbursement that the government sets, but nine times out of ten, Medicare reimbursements are equal to or better than private insurance. In fact, most private insurance companies take the Medicare reimbursements, chop a little off so they get a little more dough, and then reimburse doctors, hospitals and pharmacies the same or less, require more paperwork and busy work, and in the end, still deny reimbursement for a lot of therapies. I don't want to spend a lot of time on the health insurance debate soap box, but I can tell you from personal experience: the government actually does know how to administer health insurance, and they can do it more quickly and efficiently than private insurance companies. The reason is, they're not setting up loopholes, smoke screens and labyrinthine bureaucracies so that they can squander away as much cash as possible and pay out as little as possible. Medicare wants to make sure that senior citizens and disabled people have health care, that doctors get paid for their work, and that they can spend the least amount of money and time possible administering the plan. The government keeps their costs down by streamlining their administration of payment and reimbursement and investigating and preventing fraud so that more money can actually go into caring for sick people. Private insurance companies keep their costs down by denying care, committing either fraudulent or questionable fiscal practices, and oh, by raising premiums. OK, back to me, because this is about me, at least this story.
If the Interferon/Ribavirin therapy wasn't working so well, I would say "Interferon sucks" and "screw this" in the blink of an eye. It is working though, and I'm trying to not invite in the bad mojo, so I'll just say it's not fun. As of late, these have been the most frequent and pronounced adverse reactions:
1) Alopecia. My hair is falling out, thank God it is evenly distributed and not fast, like with radiation or chemotherapy. However, the hair that is growing back in its place is fine and wispy. If I have my hair in a ponytail, I look like I just stuck a fork in an electrical outlet. The static electricity that is so bad in the colder months makes all the little whispies stand straight out. I can't stand it, so most of the time I'm tying my hair back into a bandana. I look like a Berkeley hippie kid, but whatever.
2) Crabbiness. I'm still having to wrestle with that. I can handle it most of the time, plus I've set things up so that I minimize the people that are around me so that I don't shoot them down. Brian has gotten a lot of it, and it makes sense. You always hurt the one you love, right? I've just encouraged him to stay away most of the time until this is over. We're big boys, we can cool our heels and stay away from each other if we need to. I don't take it personally when he doesn't want to be around me, and I don't think that he takes it personally when I shoo him away. But it is an insidious kind of bad temper; it comes out of nowhere, and it makes a big entrance when it does. It is the uninvited house guest that I can't always get to go away.
3) Depression. Honestly, this is currently under pretty good control. When I feel it I understand where it comes from and I don't get a helpless feeling when it hits. I have a good self-check mechanism. I've been able to feel it coming and mitigate its damage. It's really just a lot of inner dialog, reminding me where it is coming from, and also that it won't be around that long.
4) Shortness of breath. It takes nothing for me to get winded, no exaggeration there either. At first I thought it was only from the anemia, but I've done some research and that can be part of it, but Interferon can also do it all by itself. It is annoying and inconvenient, but it just means that I have to pace myself.
5) Nausea and anorexia. It kills your appetite. I'm eating, and I haven't lost more than 2 or 3 pounds since I started it, but a lot of times I have to force myself to eat. I also have to be really vigilant and make sure that I am not missing meals. That is really easy to do when food doesn't sound good. When a nice little bowl of ice cream doesn't even sound good, I know I'm anorexic. Ice cream is my heroin. I can make myself eat though, at least most of the time. I am also consistently eating really healthy high-quality food. I am so glad that I had the foresight to make and freeze complete meals before I started therapy. It has made my life much easier than it would otherwise be; I am certain of that. The nausea sucks. Weed helps a little, but I don't like doing weed. If I smoke weed I can't do anything. I have to write off the rest of the day.
5) Fevers, sweats and flu-like symptoms. I've had low-grade fevers and nightsweats for years. Have HIV for 26 years, survive a couple of scary opportunistic infections, fry your bone marrow and then tell me that you don't have fevers and nightsweats on a regular basis, it's pretty much a given for a long-termer like me. Now that said, the fevers from this hit me like a freight train. It is sudden, it is hot, I sweat like a whore in church and it makes me totally worthless for the rest of the day. Tylenol helps a bit, but it is still sucky. I feel like I have a touch of the flu; wiped out, body aches and low-grade fevers.
6) Rashes and itching. This sucks, and it took me awhile to figure out that it was the Big I. I am kind of itchy all the time anyway. Again, because I've had HIV so long, I chronically have candidiasis (a yeast infection) in my hair follicles, and all over my body. If you've ever heard of thrush, which was one of the early indicators of HIV infection back in the beginning, well thrush is candidiasis in the mouth. In addition to people with advanced HIV, people on chemotherapy that have had their immune system temporarily wiped out often get it too. It can coat your tongue, palate and cheeks in a carpet of white, and can be painful as well. I can control the candidiasis somewhat, it somewhat, but it is always there to some degree. I won't take systemic antifungal drugs long-term, they are hard on the liver, and they make me nauseous. When I was younger and healthier, itching was one of the most unbearable feelings in the world, like torture, but it's amazing what you can come to tolerate. But what I'm getting with the drugs now is itching that is sometimes so bad I want to rip my skin off when it's at its worst. The rash is mostly on my scalp. I feel it more than I see it. I've noticed the bumpier that it is, the more hair that I lose that day.
7) Fatigue and malaise. Fatigue and malaise are my constant companions. When I started Interferon/Ribavirin, and I saw that fatigue and malaise were the most commonly reported adverse events, I thought to myself "well geez, it can't be any worse than it already is, can it? After all, I have chronic fatigue syndrome already" A word to the wise: don't ever ask yourself a question like that unless you're ready to hear the answer. I've been a zombie, a couch potato and a sloth. Some mornings, it's all I can do to get out of bed, and if I didn't have dogs that needed to go to the bathroom and eat, then I might sleep away even more of the days than I already do.
8) Impaired healing. If I get the tiniest scratch, within a couple of days it ends up looking like I got mauled by a tiger. I have to be careful about breaking my skin, it's kind of a big deal if it happens.
9) Mouth sores. I've gone over that at length already as well. Look back to earlier essays.
Now, what is going well. It really is important to remember these things.
1) It's working. As of 4 weeks ago, my hep C viral load is still undetectable. Fingers crossed that it stays that way.
2) Reflection. I've had a lot of time to think a lot of things over, and I've taken advantage of that. I've really learned a lot about myself. What you find out about yourself isn't always an easy pill to swallow, but it is what makes me stronger. More importantly, it's what makes me a better person.
3) My relationship with God. I've covered this a lot, I don't need to say anything more right now, save one: in the face of all this adversity, I am feeling a deep and and abiding sense of inner peace. It makes everything easier, every day, in every way.
It's really kind of a "duh" thing to say, but in every possible scenario that I could have imagined happening over these last 3 years, absolutely none of the monumental events I've experienced would have even been within the realm of what I would have imagined happening. It's a good lesson in the importance of not trying to plan out every next step in your life. You never know for certain what is going to happen next, and what actually does happen can change your game plan completely.
I've always found it easy to say how I think it's best to just let things happen organically, avoid trying to map out every inch of your journey before you atart and also to avoid trying to plan preemptively. It's easy to say, but not as easily done. What has changed that has made it easier for me to live this philosophy is being forced to slow down physically. As such, it's made it much easier to slow my mind down. When I'm more deliberate in my thought process, I find that it is much easier to just tell myself to sit back and relax and see what happens and then go from there. This might sound like a reactionary strategy at first, but in reality, it's really not at all how you might think it sounds. If I over-think, try to guess too often about what might happen next or over-think a situation and an action plan, I'll often make the wrong call about what to do next. Then I'm forced to stop whether I want to or not, make a 180, and then make a decision with a lot less time to think out if I'm doing the right thing. Have you ever pre-planned an entire argument with your boyfriend, girlfriend, spouse, co-worker or boss? You have everything you want to say planned out in your head, in outline form, with bullet points. You think you know what their responses to your concerns (or attacks, really) will be, and you have rebuttals planned out for those as well. Have you ever had this argument play out in the manner that you had anticipated and planned for? As of recently, I have found that if I slow down, wait and see what happens and then decide how to proceed, it is not just less stressful, it is actually more pleasant. For me, that is something kind of new; not feeling stressed about having to make a decision.
Right now, though the body may not be very willing, thankfully the mind still is, at least for the most part. I'm definitely more fuzzy, actually noticeably so. On a bad Interferon day, my brain can absolutely refuse to work. The simplest task, like washing a dish, becomes overwhelming. The me of 3 years ago could not have handled that, I guarantee it. But now, I'm usually able to just step back, take a deep breath and take it in stride. In those situations, forcing an issue only makes me more disorganized. Just surrendering to the situation is usually the best way to stop the free fall.
Aging, in many ways, sucks. Because of everything I've got happening right now, I feel like I'm getting a free preview of coming attractions. An aging body slows you down, whether you want it to or not. You can slow down the march to the finish line, but you can't stop the game. Bodies are, unfortunately, impermanent vessels that have a shelf life. Not everybody's body deteriorates at the same speed, but eventually, if you live long enough, the body dies, whether the mind is willing to let it go or not. They are subject to the wear and tear of the environment, our health habits, our diet, and many other factors, some of which are intangibles. For example, the effects of attitude on the speed of aging are well-documented, but we don't really for sure know why on a physiological and biochemical level. Having a negative attitude will speed the decline almost every time, but think: how many of you have ever known a nasty, miserable and angry elderly person?
Pretty much everybody has somebody in their family or close circle that they can say "is too mean to die". I've had friends say that about my actually, including my best friend. I'll say that I'm just too stubborn to die; I refuse to see it as a reasonable option. But nonetheless, almost all of us know somebody that fits that bill. I had a neighbor like that when I was a kid. She was probably about 95 at the time, and she was absolutely miserable. Every cloud had a black lining, and everyone was out to screw her over. My grandmother was another person of sort of that personality type. She was stern, a task master, had a very serious countenance. She was impatient, a no-excuses kind of person and just in general, kind of a bitch. I loved her a lot, but she really was not that fond of children in her later years (interesting, since she bore 8 of her own. I guess 8 was enough). Because of that, me and my siblings always felt like we were walking on eggshells in her home. There was another factor as well; my Mom was not the favorite child, Grandma was pretty obviously partial to her sons. Her sons and their children could do no wrong (and they did, trust me). Oftentimes, I felt that me and my siblings could do no right, and I'm sure that my Mom felt that she got the same treatment from her mother for most of her life.
She lived to be 95 or 96, unfortunately though, her last 8 or so years were spent in a nursing home, as her memory and mobility had declined to the point that she could not live alone (she had outlived 2 husbands). But I will say this about my grandmother: she didn't say "I love you" a lot (sound familiar?). She really wasn't comfortable with displays of affection in general. If you hugged her, you would feel her body stiffen up a little. She was a stoic, strong British lady (born in the UK) with a thick coat of armor. But in spite of all of this, she never ignored me or talked to me like I was a child, even when I still was one. She never made me feel that I couldn't learn or do something, and I learned a lot of my homemaking skills from her and her daughter. Even if it was something that I wasn't ready to do safely (like work with a big pot of hot frying oil), she would encourage me to watch if I wanted to, and she would explain what she was doing. She taught me how to fish and how to smoke meats (she had a real smokehouse on her property) and how to hand-feed the squirrels on her property. What I didn't learn about baking, canning, gardening and cleaning from my mother, I learned from her. Her love was shown to me (and felt by me) by the attention and genuine interest that she exhibited to me. Her love may have not been expressed with words, but words can be cheap. Her actions spoke volumes, as actions usually do. To her, I wasn't a kid or a child, I was a young person, and a bright one (her statement, not mine) that was inquisitive and a quick learner. I wouldn't describe her as a jolly or upbeat person. She was serious and strict, but consistent in her expectations most of the time. She was taciturn and could often come off as somewhat cold or unfeeling. Because of all these traits, she often could be absolutely impossible to be around. But there was a lot more to her, and I'm glad I was able to see that, even as a child. It was what seemed normal to me, so I didn't find her necessarily unusual. Interestingly, my paternal grandmother, another stoic British lady, was her polar opposite: loving, demonstrative, complimentary, and patient. The only thing that Gram had in common with Grandma was that they shared the same heritage and they were both strong hardy farmer's wives who came from good healthy stock.
In adulthood, I was really able to finally appreciate where my Mom's issues came from. Grandma wouldn't tell you that you did a good job, but she would tell you when you had failed and why. I think because of that, my feelings are not as easily hurt as the average person. She made you tough. I can maybe remember her telling me 1 or 2 times that she loved me, and that was toward the end of her life. I don't spite her for it. She didn't have the easiest life, but she never gave up (sound familiar?). She was, in many ways, too mean to die. That didn't however, make her a bad person. Interestingly, of all the children (save for maybe my late brother Curly), I am most like my mom and Grandma, and the rest of my siblings (the ones that are still alive) are more like my Dad and Gram. For me it makes perfect sense, I'm the youngest, and was 4 when my parents divorced. Until the day he died, my Dad was more of a casual acquaintance than a parent. I really did not know him, other than in at best, a cordial but not intimate way.
I am, in many ways, my Grandmother's creation. I'm not really comfortable with emotional situations. I'm not really good with the warm fuzzies, I'm more of a facts and figures type. I'm not a bliss ninny or a process queen. I get a curve ball, I deal with it and I move on; I don't want to talk about how it makes me feel. I don't want to dissect every emotion. Other than my therapist and sometimes my best friend, I really don't talk about my feelings at all, and I don't want to either; it makes me very uncomfortable. I'm not heartless, but I'm also a bit more austere romantically. I don't like public displays of affection, I've never even been that keen on holding hands in public. It's not contrived, it's what I am, and it's not that I'm ashamed of being gay, PDA's just make me uncomfortable. I've said it many times. In my home growing up, there wasn't a lot of yelling or fighting. There also wasn't a lot of hugging and kissing and crying or talking about our feelings. Things were discussed, solved and we moved on. My Mom was trying to raise 4 children on her own, no spousal or child support, and on the salary of a waitress. We really didn't have the time or the inclination for a lot of process or opening up. Actually, in the last 20 or so years, I've seen my mother open up a lot more than she did when I was younger. She is more demonstrative now. She gets more excited about things she loves to do and about things that interest her intellectually. She is very personally engaging to be around, and socially, she always has been. She has more friends that anybody I know. I cannot go a single day in my hometown of over 60,000 people and not meet at least one person that knows my Mom. These days the other thing that is really obviously different is she looks like she is having a good time, and I'm talking about in private, when she will let her facade down and show the real Viv. I think she is just more relaxed, and let's face it, you don't make it to 86, still be as healthy as she is and inside be a bundle of nerves. Also, I think that all my health issues scared the crap out of her and really did bring home how fragile life is and how quickly you can lose people. I have to remind myself sometimes that she has already buried a son and a grandson; life has taught her some very painful and difficult lessons. I think she wants to make sure every day that I know that I'm important to her. Even if I don't talk to her, I feel her energy every day. She still worries too much, but she also has found ways to be able to let it go.
I've been thinking a lot about aging this year. I know that it's partly because I'll be 50 in a few months, but that isn't even close to a major reason. I've never really had an issue with my age; it is what it is. I think it has more to do with the precipitous physical decline that started toward the end of last year. It was far more disconcerting when I didn't know why it was happening, but even knowing that now, I still see a lot of what I'm going through as a window into the future. I can accept it, fight it, or resign myself to it. I'm halfway between accepting and fighting right now. I think both are good survival tools, used in moderation, as long as you find a balance between them that works for you. I don't think that resigning myself to decline does anything constructive; to me that is kind of the precursor to giving up. Giving up isn't and never has been in my vocabulary or play book. I do, however, have to be a realist and accept the fact that things have changed. That means I'll have to change as well, but I know I can do it. I'm still here because I've found ways to adapt to my situation; I need to just keep reminding myself of that.
I also need to remind myself of what is on the first page of my play book of life: there is always a Plan B. And a Plan C, D, and E if necessary. I am never really backed into a corner unless I think I am. There is always a way out, and things are never really that bad. Really. It's something I have to remember now as well, with everything that is going on. There is an end in sight, I just need to stay the course. I need to keep my chin up, my eyes on the road, and by all means, don't feed the beast by having a pity party. Deal with it. It won't always be this way.
Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.
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