Beyond the Horizon

When I started taking maintenance chemotherapy (an intricate waltz of pills and doctors' visits on ever-changing schedules) I never thought the end would come. I honestly dug in for the long haul. It is with no little wonder that I can announce to you that we're past the first hurdle. I have stopped taking all the rest of the pills. After I stopped taking ATRA, I really felt like this ordeal might end. Now I can envision a new age to my life: one in which I am not defined by my disease.

To everyone who has read this, thank you! Updates will likely be even more sporadic than they have been the last year. I will still be going to the hematologist to make sure the blood looks good, and I'll let you know how it goes.

The biggest thanks of all, however, are reserved for Teddy. We all who have benefited from his devotion owe him a huge debt of gratitude. For my own part, I fear I will never repay that debt; I can only spend all the rest of my life annoying him in my attempts. Thank you, Teddy. Without you, the world would be a much darker place.

The End is In Sight

I can't believe it, but this coming weekend I'll be starting the last round of ATRA I'll ever do. In just 3 months I can stop taking anywhere from 2 to 24 pills per day. I still haven't taken much time to reflect on my lot, but I'm very lucky to be here, and even luckier to be worrying about so many little things, instead of so many big things. I have it very good. I don't wish Acute Promyelocytic Leukemia on anyone, but in a lot of ways it's been good for me.

When I went to see Dr. Robin today, I had more questions than I've had in a long time. Mostly my appointments are very routine, and I am usually the one who conducts it. I remember my dosages, treatment schedules, and how to spell the names of my pills better than Dr. Robin does. That might make him sound like a hack, but consider: he took my appointment when a better-qualified doctor was going to deny me that first time I switched away from Dr. Larson. It was the day before my appointment, this other doctor decided she wouldn't take my case, and he said yeah, sure, I'll see what I can do. So we've learned a lot from eachother, and from other doctors. I'll always be grateful to him. Anyhow, today I talked about the end-game: where we go from here. I had to make sure that 24 months from the beginning of maintenance therapy was the correct end time (it is), and wondered if I'll have to repeat a bone marrow biopsy (I will). I think I knew both of those things, but once upon a time I said, "That sounds like a problem for Future-Melissa!" and promptly worried about something else. I'll do appointments every 3 months from here, still repeating blood work to make sure I look good after stopping all the pills.

Stopping all the pills. Gosh. I've known, intellectually, it was coming for a long time. I've joked and planned a drinking binge for whichever day I decide I've had enough. But today it's become real: I won't be taking pills anymore on my birthday this year. I'll turn 29 and not take a single cytotoxic chemical. Will I feel better than I've ever felt? It's academic to wonder how long the leukemia had been brewing in my bones, making me sick and weak (well... as sick and weak as I ever have been, which isn't very), but I suspect I'll feel stronger than I have felt in a long time once the poison pills are out of my system. I guess we'll find out. Eventually I'll be able to donate blood.

That's right. Me. Donate blood. Yes, I'm getting the heebie-jeebies just thinking about it, but once I'm able to, I plan to do it as often as they'll let me. I don't even know how often that is; I've only done it once. (Funny story; I walked a mile in the hot sun afterwards, shaking with leftover fear, and nearly collapsed when I got home.) I feel I owe it to so many people -- I literally cannot count how many people have saved my life. Hell, if you live in the area and have donated positive-type blood, you probably gave a little to me. I needed that much. So I'm going to start giving back, if they'll let me. I feel a sense of responsibility to anyone who needs as much help as I did. Did: past tense; I've long since kicked the blood habit.

It's been a long and winding road, difficult at times, occasionally unpaved, but never lonely. Thanks, everyone, for your continued support. I'll keep you up to date with the changes my body undergoes as I stop taking medicine, hopefully all for the better. I'm strong like that.

Is this thing still on?

Ahem. *tap tap* Hello?

I know I have been, uhh, lax doesn't cover it. I'm a terrible blogger. So here's the update:

There are no updates. My maintenance therapy is working beautifully. My numbers are consistently good. I'm tolerating the increased dosage of medicine fairly well - better than expected, actually. There is one embarrassing side-effect that I'm no fan of: acne. I've never had more than a touch of it my entire life, and it's annoying. It's really no more than a few whiteheads, so I guess I'll live. In fact, it's so mild the doctor didn't even want to do anything about it. But still... Phooey.

The count-down is on until I can get off this crazy thing and make that last step into a cancer-free life: giving up the pill-box. August 2011 - put it on your calendars! I guess it'll be nice to have the liberty to indulge in more than one or two drinks at a time - that's all I'll have in a week, normally - but for all intents and purposes I'm just about done. Woot!!

Thanks for your support, everyone. And hey, how cool is it that a facebook post covers all you need to know about my doctor's visit these days?

Addendum!

I'm on a writing spree! Two in two days! So Dr. Robin got more information on why I'm taking so much medicine, and it turns out that there IS an excellent answer. It's part of an experimental treatment that seems to be bearing out a rather shocking hypothesis:

More medicine works better than less.

I can't believe it, either. Good to know, though, that not only did I receive cutting-edge treatment at Rush, I am also getting smart, compassionate care here at Dr. Robin's office.

The Hard and The Easy

It's nice to have Teddy around. I say that first-off because it's so important. He gently helps me remember, when I'm worked up about something, that I'm lucky to have the luxury of being upset about the small things. And it's true! All-in-all, it's a good day for me.

As I hinted, I was upset today. I've been working since my last update in January to get an appointment with a new hematologist due to switching from my COBRA coverage to Teddy's United Health Crap. Hopefully, this will all soon be obsolete! But in the mean time, the appointment that I've had put off again and again what with one thing and another was this afternoon. This morning I got a phone call from the new doctor's office and I assumed it was a confirmation of my appointment - albeit a little late in the game. No, in fact, it was the receptionist (a lovely woman) giving me good and bad news:

Bad news: The hematologist that Dr. Larson recommended to me doesn't see leukemia patients. . . . Once again, the doctor that I've been working with to make an appointment won't even see me. Head, meet desk.

Good news: Some other random guy in the office will, on short notice, at the same time as my appointment was supposed to be. Whew, dodged a bullet there, right...?

...Right?

Dr. Erwin Robin isn't a fun man to talk with. He speaks quickly and aggressively, uses medical jargon and Latin interchangeably with English, and has a generally domineering personality. However, he also admits when he isn't sure, goes to someone who IS sure, and then gets more opinions when it still doesn't sound right to him. He's sharp, thorough, and he clearly cares, even though he is hard to talk to -- even though my Med-Speak is up to snuff, it's just as important that Teddy understands every word he says. And after all, he took me on short notice and he did it with alacrity.

So, onto the appointment itself. The offices are cozy and personalized, in sharp contrast with airy, sterilized Rush. The lab is one room, with one guy named Bob who had my Complete Blood Count finished while I held the gauze on my GAPING STAB WOUND (I kid... mostly). And Dr. Robin was impressed with my blood levels and how well I'm tolerating chemo doses that are, apparently, six times higher than normal for my diagnosis. That was what was puzzling him - why am I taking so much medicine? It's abnormal, even for someone who is high-risk (I am) and didn't get enough intra-thecal chemo (I didn't). He conferred with Dr. Venugopal, the head of hematology at Rush and a long-time friend of his, and Dr. Venu wants me to continue what I'm doing, but Dr. Robin is still not certain it's in my long-term best interest. This causes me a small amount of anxiety, but it's good to know that I have a doctor who is worried about me and who is taking every measure to ensure I'm getting what I need and no more.

For now, things continue as usual. I am as healthy as a horse, except for that pesky cancer. I'll update you if Dr. Robin updates me! And, as Teddy so aptly reminded me, we should all remember that I'm in the home-stretch now.

Latest Appointment

Well my appointment today went just swimmingly. Once again, my blood work is holding strong. My more specialized blood test looking for leukemia markers came up negative, and we wrapped everything up with Dr. Larson. I feel the whole thing went very well. She said that, since we're coming up on one year since my diagnosis, I can soon start going only every other month. Woo!

One year since my diagnosis. I can hardly believe that. I'm almost back to where I started - cancer-free, able to do most things, working, and simply enjoying life. Looking back, soon this will only be a blip on the radar - a short but alarming blip.

Insurance is a sonofabitch, but things are worked out and I have some meaningful recommendations from Dr. Larson. From here, it's just a matter of taking the dive and picking someone new. At least it's a 10-minute jaunt from home instead of an hour-long ordeal each way!

So, as always, things are looking up. Teddy and I have all kinds of fun stuff planned for the coming months, and in general, life is settling back into something close to normal. In fact, things have scarcely ever looked better.

Ahhh, Insurance!

I recently switched to Teddy's insurance plan to save some money and some hassle (my former employer are utter nitwits concerning COBRA) and I half expected this, but I'm having to switch doctors. This is a real blow to me, as a very much like my current haematologist, Dr. Larson.

The list of providers is just names, addresses, phone numbers... none of it means anything to me. I'm totally lost as for where to turn. I've tried asking for a recommendation from Dr. Larson's office, but surprisingly no one is answering me.

I know I'll get this worked out, and I'd like to make my appointment this month and just pay the out-of-network fees to get things all wrapped up and make sure I have a copy of my chart for the next doctor. I'm just a little lost at the moment.