Worst.blogger.ever. Okay, probably not. But, sometimes I worry that my posts are as entertaining as “Bob in the Basement”** who writes things like “I’m Bob. I like sitting in my basement and looking at stamps. I had spaghetti for dinner. It came from a can.” Good times. But, I remind myself that I usually have something marginally interesting to say about stuff that other people may find useful. (It’s almost like I’m a saint. Watch out, Mother Teresa, I’m comin’ for you…”) And then life happens, as life inevitably does (and should!) and all of a sudden it’s been months since I posted anything. One thing to note about me: I have terrible follow-through. Just ask my roller blades, still in the package from my 12th birthday. Or the time I decided I really wanted to learn how to bake…I still don’t know how to make those delicious boxed cupcakes with the rainbow bits in them (and I’m fairly certain all you have to do is add water and some kind of heat source). However, I digress…welcome back to the world of CrapBag, dear readers. Some things have changed for the better, some things for the worse and some things I have yet to decide on…
So, the big news (besides the other big news), is that I am back at work. Nothing permanent for right now, but it’s kind of perfect because it’s letting me ease back into a routine. I am not gonna lie: the first week was sort of like being a hamster: spinning, spinning, spinning in that habitrail just to end up in the same place. But, it was almost kind of nice because it was difficult and tiring and just a little tedious– it has been so long since I was legitimately tired and not just tired because my liver, pancreas and gallbladder were angry with me. And the routine is nice, along with being out in the world and actually seeing people. And not just any people – but people who don’t know me as “sick girl”, which is really gratifying. With the hair grown back (mostly), and my weight stabilized I look sort of like a girlish version of Peter Pan (not the Hook version because even at my worst I did not look like Robin Williams). A healthy Peter Pan. But, God sometimes I just want to yell: “go get it yourself, you lazy bastards! Do you have any idea what I’ve been through?!” And then, I think: “no, no they don’t.” So I take a deep breath and then go do it myself. And there’s a freedom in that which I doubt I will ever take for granted again.
So, CrapBag is back at work (for the moment) and working on my Master’s paper even though I doubt I will ever actually be able to put MA beside my name. It continues to feel like a perma- albatross around my neck that I will never, ever be rid of. I find myself in the midst of yet another academic petition, trying to get York to stop charging me tuition for time I was too sick to attend seminar.***And I am living on my own for the first time in almost four years, which is lovely. But, not all in life is wonder and roses… every time I manage to convince myself that I am healthy and all of this PSC nonsense is all a mistake, I meet up with Sir Gideon at Toronto Western and am reminded all over again about the joys of living with chronic illness. Sort of like the city of San Francisco: all you can do is go about your life and business, but you know sooner or later the earth is going to fracture beneath your feet.
I had an appointment about a week ago for an ultrasound to check on the progress of my sinister and suspicious strictures and my general health. I get down there and report a little bit early to ultrasound – where the lady informs me that my appointment was changed. And I said: “to later in the day?” And she says, “no, to three weeks from now.” And I, stupidly, replied: “But I’m here now.”… And she just looked at me like I was an idiot and called “Next!” Suffice it to say: I was pissed. No one had called me about re-scheduling anything. And I felt with six months between check-ins, that there was sufficient warning time for someone to pick up the damn telephone. However, I used the power of my bitch-on and yelled, cajoled and guilted my way into them “sneaking” me in for an ultrasound without an appointment and fitting me in with my doctor (the great and powerful Gideon!). I have never really been able to talk myself into anything/anywhere, so here is the magic combo of what seemed to work:
- Exaggerate. I lied and said I had driven in from Ottawa the night before specifically for the appointment. However, I would have had to do so to come back for the re-scheduled appointment so it wasn’t beyond the realm of possibility. Also, I didn’t feel bad at all about it, so I suppose that’s something. (Or says something about how defunct my moral compass is. Whichever works.)
- Look pathetic. This was not that difficult to do because I was literally shivering and freezing in front of their eyes. I think my general air of pathetic-ness sped things along nicely.
- Try to be charming. It was the male ultrasound tech who volunteered to move his lunch around to do my ad hoc ultrasound. And then he talked to me the entire time about how cool my scars are before chatting my ear off about Buffy the Vampire Slayer.
- Develop a good relationship with your doctor – he knew my name enough to consent to squeezing me in when he certainly didn’t have to.
So, I got my ultrasound and got in to see Dr. Hirschfield before my scheduled appointment time was even upon us, so all in all I think it worked out pretty well. We first talked about how exceptional my case was (not in a good way, like “you’re exceptional” but rather like “we don’t know quite what to make of you or your disease). I suppose it’s something that I’m not boring! Most PSC cases involve scarring in the hundreds of little ducts inside the liver. Because these ducts are so small and fryable (fragile and prone to bleeding because of their proximity to the liver), there is no ERCP or stenting to be done to keep them open. The little ones just kind of gradually shut down and there’s nothing to be done. Not so with Captain CrapBag! My disease manifests itself outside of the liver in the one duct that is there. You may have heard of it: the common bile duct. It’s kind of a big deal. Anyway, so the good news is that as the Cholangitis causes scarring, I have been able to treat it with stents to keep the scars open until they literally scar partially open and are able to keep the bile flowing. The bad news, then, is that once the common bile duct shuts down, that’s pretty much all she wrote in the story of “Ang’s original liver.” Once that becomes cirrhotic, that’s pretty much transplant time. But, hopefully we can put that off by stenting and ERCPs as needed.
Which brings me to my current predicament. The ultrasound shows that my ducts have become more prominent (a medical term which apparently means that the scarring in the cbd is getting worse and the bile is laboring more to move in and out of the liver. All of this extra work makes the ducts swell and become more… prominent. Think: the Little Engine that Could). The Hirsch couldn’t get an accurate picture of the stricture (for the record still classified as suspicious and not sinister****) with the Ultrasound. So, I am waiting to hear about the timing of an MRI which will hopefully show whether a stent (aka another ERCP with Dr. May) is necessary at this point. Apparently, doing ERCP’s on people who are generally otherwise healthy (haha, remember when I was what passed for healthy these days?) tends to lead to deterioration. It’s one of those weird “X factor” moments that they can’t explain but have noticed time and again in Cholangitis patients. So, Dr. Hirschfield is reticent to recommend an ERCP at this point until we’re sure the stricture requires one. He is afraid it will end up doing more harm than good. And since ERCP’s aren’t my favourite thing in the whole world (needles, not being quite asleep, the rat poison-tasting numbing spray, and the whole shoving a giant tube down your throat), I am all for waiting. Apparently the only thing worse than doing the next round of ERCPs pre-emptively is waiting until I get all jaundiced and itchy because than the puts a lot of stress on the liver.
Anyway, despite the fact that this weirdly operatic balancing act is going on inside of me, I’ll leave it to the docs to worry about. I’ll wait to see what the MRI shows and decide from there. In other liver-related news, I have joined Dr. Hirschfield’s PSC gene/cell line study. 100 patients from Toronto Western (including myself) and 1500 patients from around the US are being coordinated through the Mayo Clinic (and how cool is that?!) to study the genetic make-up of Cholangitis. I gave a couple of litres of blood and signed about a thousand consent forms (I am fairly certain I gave a doctor in Venezuela permission to harvest my toenails should I ever die as a Zombie) and then took home a questionnaire. Now I feel this is a generous title for what is actually a novel regarding my health, my environment and my practices (smoking, drinking, etc). All of these I expected. Then they asked about my maternal and paternal grandparents, my parents, my sister, my blood-related aunts and uncles (on both sides) and eighteen of my blood-related first cousins in chronological age from the oldest. So, now people I haven’t spoken to on the telephone ever are going to get a phone call from me that I assume will go something like this: “Hi, it’s Ang. Remember me…? I’m Hoppy’s youngest? Great. Uh, so have you ever had Hepatitis? Sickle-cell Anemia? Ever worked with heavy metals? Been diagnosed with Primary Biliary Cirrhosis or Primary Sclerosing Cholangitis? Had an STD? What year exactly were you born? How would you rate your overall energy levels and health? Great. Uh, my love to the kids. Bye!” (read: Awwwkward.)
But, in the grand scheme of things I like to think my blood and tissue (gross) may help find a cure or something to help stave off the onset of PSC and all its pain-in-the-assness. And even if it doesn’t happen in my lifetime, maybe one day, somewhere, it will lead to a breakthrough. Or, perhaps they will simply learn how to re-grow me a liver by letting it gestate on my shin for a few weeks. Baggy pants and being careful with car doors doesn’t seem like too rough a deal for a presto-changeo new liver with no fear of rejection…
And now, the piece de resistance! Dr. Hirschfield actually had the biological clock discussion with me! At my (semi)young age. *gulp* Anyway, in short, he asked if I planned on reproducing. He said that there was no reason that I couldn’t have kids, should I want that. There was little to no evidence that it adds extra strain to your liver, although it does seem typical that PSC patients experience jaundice-like itching for the whole nine months (to which I say a heartfelt: f*ck that!) Anyway, he gave me some stuff to think about, the crux of it being that people with chronic illness tend to have more difficulty conceiving. He also cautioned against waiting until later in life to try: risks go up markedly the later in the 30s you go, and once I hit 40 he cautioned against trying. So, more stuff to think about. I have to admit that I never really wanted kids of my own – I always liked kids well enough, but I don’t have a burning desire to spread my genetics (especially now that I know my genes are like a perfect storm of shit). The only reason I would want to have my own children would be to make sure that parts of the people that I come from will have a place in future generations. But, like my friends say: there is always surrogacy. Or adoption. Or getting my own pony, and instead spending ridiculous amounts of money on other people’s children and bribing them to like me. Like I said, lots to think about…
*Ah, My Cousin Vinny. Such a classic, classic film. I recommend it – just not in the first four weeks after an open colectomy… stretching/tearing out staples whilst laughing uncontrollably is not something I advocate unless you like to cry. (For T: “his shoes are made of wicker!”)
**Not a real blog, at least I don’t think. I am heading to the patent office right now, though, so I can soon develop my alter ego. The internet is going to be riveted by my innermost thoughts about leprechauns and if the insulation in my crawl space is giving me esbestos-related black lung. Stay tuned…
***This topic will be explored in more depth shortly as I want to dedicate some time to the idea of balancing illness with academia. Stay tuned…
**** See entry entitled “Suspicious and Sinister Polar Bears.”
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