Let's take a quick journey through this time first: On June 14, 2009 at around 9:00 pm I injected my first dose of Interferon. About a month prior to this, I started really getting some serious food religion. I expected that it was very likely that the Interferon was going to really take a whack at my appetite, and I wanted to make sure that if I wasn't going to able to eat enough food, that at least what I ate would be the most nutritious, healthy and fresh food, and that I would also be eating a balanced diet. So starting in early May, I started going to the Pleasant Hill farmer's market, which is only about 3 miles from my house, if even that far. I canned, froze and pickled myself into oblivion. I put up enough food, including almost 100 fully prepared and then frozen meals; enough to make a Mormon wife proud. I seriously cut down on my intake of highly-processed, junk and fast food. I read In Defense of Food, and took it on as a religion. I continue to see the rewards of that decision: Do I feel healthy and strong and vibrant? No. But do I think this last year could have easily been a lot worse if my nutritional needs had not been met so well. Absolutely yes.
I lost my 16 year old Basenji, Kaelii, when she fell into the koi pond on a warm summer afternoon and drowned. I finished up the dealing with the will contest brought by Ken's family and saw it through to resolution. I started to take my writing seriously and see if it could be turned into my craft; the jury is still out on that one. I cut off my hair, that over the prior 3 years had grown to a length that had it about 1/3 of the way down my back. I ended an almost 3 year relationship with Brian. Though it was the right thing to do, it still didn't make the process any easier. Ending a relationship is never easy, and it's not just the cost that it exacts upon you, there is another person involved, and their feelings need to be given as much weight as yours. I spent the month and a half prior to Christmas baking, cooking and canning my way into oblivion, because I decided that the few Christmas presents that I did give were going to be gift baskets of homemade food. I said the few presents because as much as I love Christmas, which I do, the present giving and receiving part is really not that meaningful to me. If you're ever going to give me a present and you want it to be meaningful to me, don't give it to necessarily mark an occasion or a holiday, do it because you want to give me something. That tends to be how I gift most of the time.
Early this spring, I started taking my first few tentative steps into the dating world - we can tackle that subject another time. As part of my new food religion I decided that I was going to do a vegetable garden, so I've spent the last 4 months basically redoing my gardens; everything from changing out a lot of was was previously planted, putting in a bunch of fruit trees, redoing the irrigation to make it more efficient and less water-consumptive (and screwing up the job a few times in the process, but I tend to learn best from my failures). Right now I'm just starting to eat the first fruits of my labors. I've also learned a number of lessons in the gardening school of hard knocks. I've figured out what grows well in my area and what doesn't. I've learned that when you over-water your garden; you tend to make a lot of your plants susceptible to disease, most specifically fungal diseases, which then makes the plants more susceptible to pest damage. I learned that squirrels really like tulip bulbs. It's the squirrel version of potato chips, and if one wants to grow them in squirrel country, one must be very clever and put in a lot of extra work to make the bulbs inaccessible to the squirrels.
Then, 2 months ago, the one dog of mine that has become my most beloved dog in all the years that I've lived with them nearly died because of my negligence. He has recovered, I've mostly figured out a way to stop beating myself up about it, and well, that brings us up to now. This was a quick review, and I'm relying on a frequently faulty memory, but that is the stuff that sticks out in my memory. There is one more fairly big thing that happened this last year, but it wasn't one specific thing that happened at one specific point in time; this is really more of a process. This process deserves a name, I think, so I'm going to call it:
Things a Year on Interferon Taught Me
- I don't scare easily. You can tell me that I have yet another horrible disease, that the only treatment is a year long, that the drugs are very toxic and will wreak havoc on my body, and still, that at the end of the day, I've statistically got at best a 30% chance that it will work. Not only can I digest all of that, but I will still say "OK, let's do this thing."
- You can throw 10 or 15 things at me all at the same time; not fun things either, and somehow I will manage to find a way to handle it all and still maintain at least a modicum of my sanity. Now granted, dealing with all of it might mean that I put off half of it, but I still know it's there and I just tell myself that I'll get to it eventually. Now that eventually might be a while; I've still not hung the vast majority of my artwork, finished painting a bathroom, all the trim in the house, and finishing up the touch-up painting everywhere else in the house, and I've been in the house for 2 1/2 years now, but I know that it's still there waiting for me (the work, that is). I also know what my limitations are, having lived with chronic disease for more than half of my life, so I know that all in all, the stuff that I don't get done really doesn't matter in the long run, so I can fret and worry, or I can triage my list, and get the work done in the order of importance, and just let go of what I can't do.
- I've always thought that I'm way too scatter-brained. After this last year, with having my brains pharmaceutically scrambled, and as a result having to slow things down enough to process all of the information coming at me, I've realized this: Maybe I'm not that scatter-brained, maybe I just have an inordinate amount of information coming at me constantly, and that even in the best of circumstances it's more than I can handle. Maybe the problem isn't so much that I'm absent-minded as it is that I don't know my limits and continue to try to manage more than I really can or should handle. Or maybe not.
- Don't ever let yourself feel any false sense of security. Just when you think you have a problem licked, when you might just get a very rude awakening. When you think you finally have the tiger caged, you might look a little more closely and see that you really have the tiger by the tail. A couple of months ago, my barrage of adverse reactions to the Interferon didn't go away, but they did seem to be getting less severe, and nothing new and weird seemed to be happening. As such, I started to think "hmm, maybe the worst is over." The second that I had that thought I should have slapped myself. About that time, the mouth sores, which had been at bay for months, came back with a vengeance. 3-4 days after every injection, I would have a day where from the moment I woke up, I felt like I had the worst flu ever. This week it happened on Thursday. I could barely get myself out of bed, take care of the dogs and the cat, try unsuccessfully to eat something and then to fall onto the sofa, from which I could barely get up for the rest of the day. I had chills and a fever of between 101.5 and 102, severe muscle aches, lethargy, and just a general malaise. The next morning, it was gone, and other than feeling a little residual fatigue, it was as if nothing ever happened. A fever from Interferon is common, but usually happens early on in the therapy, becoming less severe as one gets further into the treatment cycle. It almost always occurs within 10 hours of injection. But I am me, and my body never seems to do anything the way that it is supposed to, so I ought not be surprised. These are just examples of what has been happening lately, but there were many others. I just don't need or want to go through an entire laundry list to make a point.
- This is kind of an offshoot of number 2, but I still think it bears discussion as something discrete: I have found out that I can watch a lot of shit hit the fan all around me, and keep my composure, even if the fan never gets turned off. I've developed an ability to be able to just say "oh well" when what is happening around me is out of my control, rather than trying fix things that I can't fix, and even more, to be able to do this without getting an ulcer. Loved ones die, pets die, people get sick, sometimes with more than one thing at at time and relationships fail. Those are just the facts of life. Accept that or go crazy trying to avoid the inevitable
- My idea of normal is a bit skewed. When I say that I'm feeling good, what is good for me is very likely pretty crappy for most people. That is what living with a chronic disease does to you - you adjust your sense of what is normal to the circumstances that you have. So when I think that things are going great, if you looked at the situation, you might think I was either crazy or in denial. But I know what my limitations are and I don't have unrealistic expectations, so for me, when I think things are going well, for me, relatively, they are.
Then there is one last thing that I've asked myself: If I had known from the outset how really crappy this entire experience would have been, would I still have done it, even factoring in knowing how statistically unlikely having a good therapeutic response was going to be? Yes, absolutely. It was worth the risk, and in my opinion, I really had nothing to lose. I wasn't going to get better by doing nothing, so what were my options?
So here we are, 13 months later, and after a little trip down memory lane, I have to say, it's been an interesting time. But I can pretty much say that about all my life, especially my life since February, 1983, when on my first visit to San Francisco I made a very poor judgment call. I'm just lucky that I've survived the consequences of that decision, and rather than blaming the rest of my life on it, I used it to grow. Allegedly.
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.
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