Leuk, I am your father

Beyond the Horizon

2011-08-15T10:04:00.002-05:00

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

2011-05-17T21:39:00.004-05:00

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?

2010-11-15T22:15:00.003-06:00

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!

2010-03-23T16:03:00.002-05:00

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

2010-03-22T22:51:00.003-05:00

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

2010-01-21T01:02:00.002-06:00

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!

2010-01-13T13:28:00.002-06:00

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.

Fun Side-Effects

2009-11-09T20:57:00.001-06:00

I like to drink. I truly, truly enjoy a good craft beer, a lucious bottle of wine, or smooth spirits. I crave a nice cocktail, even. I'm not a drunkard, just appreciate an excellent drink. So it was a bit of a blow when I read that my 6-Mercaptopurine (Meerkat Top Urine? Metaporcupine?) can cause undue liver damage when combined with alcohol. I guess I am embarking, unwillingly, on a sabattical from spirits; a break from booze; a furlough from firewater; a holiday from the hard stuff? In all likelihood, it's until August 2011, which will be the end of my maintenance therapy. It looks like I'll be aging those bottles a little longer than intended. 2007 Dark Lord ought to be an outright rarity by '11, but here's hoping it tastes all the sweeter for the wait.

...Anyone in the market for a designated driver?

Happy Sandwich Day!

2009-11-03T18:29:00.002-06:00

It was another uneventful visit to Dr. Larson on Monday! And I can tell you, it's fantastic to be able to say that. My numbers look good, the pills I'm taking now aren't affecting my blood counts like they occasionally do for some people, and I'm starting another pill entirely next week. It's called 6-Mercaptopurine (these names just get wackier and wackier, don't they?) and once again, it's a mild immunosuppressant and side effects are mainly stomach-related. This is a daily pill, and it completes my trifecta of maintenance therapy that won't end until August 2011.

I'm doing so well, all things considered! Still looking for a job, but I'm hopeful. The holidays are approaching fast and I'm feeling festive! It starts with Thanksgiving, then Teddy's Birthday on the 28th, Erin and Lanie's birthdays, and then I'll start thinking about Christmas. Even getting dark at 5pm, I do love this time of year.

Lew Zealand's Amazing Boomerang Fish!

2009-09-26T23:44:00.002-05:00

Why yes, I have been watching the Muppets. Why do you ask?

So I had a doctor's appointment on Friday. As usual, everything went swimmingly. My numbers were all good - I'm not even anemic any longer! Good enough, in fact, that I am able to start my second of the three pills that will make up my two-year maintenance therapy. The first was the ATRA, and this second is called Metho...trexo... something. I take eight pills of this once a week on an empty stomach and, from what I hear, then I try really hard not to be sick. I'm starting Monday (because who likes Mondays anyway?) so I'll let you know how things go. Although this pill is a chemo drug, it won't affect me as badly as IV chemo did. No appetite loss, no hair loss, just a little stomach illness.

Speaking of hair, mine is coming back thick, wavy, and blondy! I could upload pictures, or you could all come see for yourself next week when I'm in Auburn at my parents'! I hope to see a lot of friends and family whom I've been missing (and not calling nearly often enough...). Teddy will be in town from October 3rd through 10th, but I'll be staying through the 15th. Hope everyone gets to meet Teddy - as anyone who reads this blog undoubtedly knows, he's a fantastic guy.

Love,
Melissa

Dear Northwesterners;

2009-08-27T21:11:00.002-05:00

Teddy and I will see you at the beginning of October! :)

Love,

Melissa

Lookit That Fuzz!

2009-08-24T22:28:00.001-05:00

Finally, a Health Update

2009-08-17T22:42:00.001-05:00

I hear a few people have been waiting rather impatiently for this update! Well Dr. Larson and I had a chat today about my progress and the path I am heading down. Let me say first that my blood numbers are all coming up nicely - although I am slightly anemic she is not concerned and I'm still well within an acceptable range for my point in the leukemia journey. Outside of some dry skin I haven't had any health issues during the intervening month or so since my last visit. Tomorrow I start on ATRA, which I have taken before with few side effects other than (ugh) more dry skin. In a month I'll start another more serious chemo pill, and a month or two after that I'll start yet another. The idea is this: monitor a specific marker in my blood for signs that the leukemia is returning, because some of the drugs I will be taking further down the road sometimes cause blood numbers to drop. The moral of the story is, I'm in the best kind of remission but I'm still taking pills to make extra sure that this crap isn't coming back.

In short: it's aaaaall good.

Check Out the Stubble!

2009-07-30T16:34:00.003-05:00

Hooray Surgery!

2009-07-08T14:18:00.000-05:00

Cross-posted from... oh forget it; you know where my blog is. -Melissa

As you may recall, my line was removed yesterday. I was a bit worried about it, as the last time they removed an intravenous catheter it was rather uncomfortable and I got no pity (nor anaesthetic) from the surgeons who removed it. Well, it was still uncomfortable, but I dealt - and they did give me some lidocaine to numb, which is a mixed blessing as I hate getting shots. There's only so comfortable they can make you when they yank something out of both a great big vein in your neck and down towards your heart. I got to experience stitches without anaesthesia once again, but it's less horrible than you might think - a choice between getting more lidocaine to numb, which actually stings and burns for about 30 seconds, or a couple sharp sticks and some pulling, which hurts for maybe a second. I expected quite a lot of bleeding, considering the position of the catheter, but so far I've experienced none. Woot! All in all, easy peasy. In fact, with my line out, in a week I'll be able to shower without taping plastic wrap over a perpetually open wound! With that out of the way I'll probably be down to 5-minute showers. Showers hold no allure these days, however, as I can't experience hot water running through my hair; it was the only thing I liked about showering, to be perfectly honest, and now it's the only thing I don't like about being bald.

In less-awesome news, my headaches have been unbearable starting sunday evening and going into tuesday. Bad enough that I took the dilaudid that I swore I would never need outside of the hospital... As a matter of fact I called my doctor and left a message because the headaches had gotten worse and not better; of course, she never called me back. But today things seem to have turned around, finally. All things considered I'm feeling awesome today, and havent taken any narcotics. In fact, I think I can get by from here on with just Tylenol if things stay as good as they are today.

Speaking of things that aren't awesome, I've been waiting for, oh, five hours for my landlord-slash-Teddy's-uncle's lackeys to buy a door to replace ours, which has had a massive hole in the back side since before we moved in. They measured it around 9:30 am and went out seeming quite efficient to buy a door to measurements. Hours later, my poor kittens are still locked up in the spare bedroom (to keep them from escaping while the guys have the door off) and I'm prevented from napping or mailing out a package to my momsy. What is this, cable installation?

But let's not dwell on the bad. Like I said somewhere in the middle of my rant, all things considered I'm feeling awesome. Every day is a new day and things are only getting better.

For Amy.

2009-07-06T12:47:00.003-05:00

Amy made me promise to post pictures of Melissa's hair and eyelashes as they're regrowing. So, here goes.

In Which Melissa Rants

2009-07-03T12:39:00.001-05:00

This post has been removed for personal reasons. I'll be happy to discuss the contents, which dealt with losing my job, on an individual basis.

Woohoooooooo!

2009-06-30T10:32:00.002-05:00

This, and most of the posts from me, is cross-posted from my Livejournal.

Suffice it to say the doctor's appointment yesterday went well. How well?

I've been moved from a weekly to a monthly appointment schedule and taken off all daily medications, allowed to go out into public with no mask, and told that in a month I can be relieved of dietary restrictions! That's right, people - one month to sushi!! YAY! Also, I'm having my Hickman catheter (basically a tube with three IV sites permanently implanted in my chest to make it easy to draw blood and give medications) removed next week - which means they anticipate not having to draw my blood or give me meds as often. YAY! The doctor accepted that I am never getting intrathecal chemo again. YAY!! She also said that I probably won't need any more bone marrow biopsies because I'm in molecular remission. YAY!!!

And the biggest news of all? I can go back to work! The doctor is sending me a note and I've decided two weeks is an appropriate time line. I was going to shoot for next week, but then I got the surgery scheduled so I'm holding off. I think I'll start going to the gym to get some stamina back. Even sitting at a desk for 8 hours a day is hard work when you're used to laying around...

This all sounds like great news, but it's not 100% rosy. I'm still going to be on what's called maintenance therapy starting next month. It's pill chemo for two years, and though it's not as strong as IV chemo, it will take something out of me. It also has the possibility of messing with my blood numbers, and for that reason some people choose not to do it. Because I'm in the best kind of remission the doctor went right out and said that she would be understanding if I took that option, but she wants to try it first. So we'll see how it affects me, and if it's intolerable I can just decline. Sounds good to me!

All in all, a great hospital visit.

So my mom went home yesterday. We got her to the airport for her early-morning flight and it was all I could do not to cry. I will really, really miss her. Although it was for a terrible reason, getting to spend so much time with my mom has been so good for me - and you need to be able to pull something good out of a situation like this. I realized how close Mom and I are, and we had so many great times. More than just having someone to help me, I am going to miss having someone to be with me though I'm happy that she gets to resume her life. So it's bittersweet that she finally gets to go home.

Teddy took today and yesterday off work and we've been hanging out. Hooray for getting to spend time as a couple! I have to admit, I have missed that a LOT, as much as I liked having my mom around. We spent yesterday hanging out, and today looks like more of the same. Ahhhhhh, life is good.

The 'Roids

2009-06-25T07:06:00.000-05:00

I'm having trouble sleeping lately, and I'm blaming it on the steroids they're giving me to keep my headaches in check. Yes, I'm still getting headaches from a lumbar puncture ages ago - I'm a modern freakin' marvel of medicine if you ask my doctor, pretty average if you ask a lot of ladies who've had lumbar punctures before. As the steroids are being tapered off (one of those things you don't just up and quit, I guess) my ravenous appetite and sleeplessness are kinda getting better, but still bothersome at odd times. The thing is, all the sleep I've lost, Teddy seems to have found! He goes to bed at 7:30 these days if he can - no lies. I want to invent a brain-machine that will channel at least some of his sleep to me... ROAR!

In other news, my mom will finally be going home soon. That doesn't sound the way I intended it... You see, the saint of a woman has been here since my diagnosis in February. Living with us. Away from her husband, job, income, responsibilities, and essentially her life. Oh my god, how do I deserve such a mother's love? I am so happy for her that she finally gets to go home, which I can tell she desperately misses, but I'm also so sad. The bonding we've had in these months has been phenomenal and I'm just not ready to give up getting up and having Malt O Meal with Mom every morning like when I was a kid... I'm also not sure I'm totally ready to live on my own again, doing the grocery shopping, laundry, garbage, and things like that that require carrying things up and down steep stairs that, I admit, I still have trouble making up under my own power without huffing and puffing. I'm getting better, though, and I need to get better faster. Lately we've been spending hours a day just playing Rock Band; it's been a hoot! We've done some cooking, but not as much as we've wanted to due to the heat. So Monday we take Mom to the airport, then doodle around for a few hours before my doctor's appointment.

Which takes me to my next point: where am I going from here? When can I go back to work? I feel almost ready, and I definitely feel ready to replace that lost income! We're not drowning, but we're also not sipping margaritas on the poolside, kiddies. Luckily my insurance coverage continues to be excellent, and I am getting reduced COBRA rates (don't look that up if you don't have to; it's insurance continuation and a pain in the ass). I plan on this appointment being a quiz of the doctor as to how soon I can get back along with life. I won't say that I want to go back to work (I've been pampered and praised for 4 months... would you? ;) but I want to go back to working, if that makes sense. Contributing. I feel lazy. I also would like to hear that some time soon I can go out in crowded places without a face mask and can eat sushi again and even take out the cat litter. My immune system is getting back to normal finally, and I want to take advantage of this fact! So after my Monday appointment I promise to let you all know the prognosis for the rest of my summer, if not life.

Heavy thoughts for the middle of the night. Perhaps I should go back to reading my mom's cat-themed murder mystery fluff. Sadly it is all I have left in the house that I haven't read or attempted to read.

To market, to market...

2009-06-18T17:13:00.001-05:00

Home from the hospital!

Melissa's feeling lots better and the doctors sent her home! Looks like it might be a nice, relaxing weekend.

Too tired to write a creative blog post title

2009-06-16T13:33:00.003-05:00

Yesterday was not as good as the day before. Today is turning out to be a little better.

Melissa's headaches got a lot worse yesterday morning so they started giving her dilaudid for the pain. It knocked her out at first, but she's feeling much better today. She still doesn't feel 100%, but she's needed less pain medicine. They took her downstairs for a CT scan last night, to maybe see what's causing the headaches, but we haven't heard any results yet.

On the bright side, her mouth sores are continuing to heal and her blood counts are starting to rise. Good things!

Movin' on up.

2009-06-15T15:35:00.000-05:00

This post has been sitting in the drafts folder of my email for a couple days now. I guess I pressed "save" instead of "send". Whoops.

Around 7 or so Friday night they finally got a room for Melissa on the good old 10th floor. The difference between the two sections of the hospital are striking. If I didn't mention before, we were on a general floor. It was noisy and kind of dirty. The 10th, by contrast, is clean and quiet. It's like they're in different hospitals. Amy says that we're spoiled - in a way, I agree. The other floor is nicer than most of the general floors I've ever seen, but it's still a Super 8 motel in comparison. (I'm not saying this is the Four Seasons. Maybe a Best Western or Holiday Inn Express, though.)

(Here starts the part of the post I added today.)

They found a slight bacterial infection in Melissa's blood culture on Saturday. By Sunday, though, it was gone. The antibiotics they have been giving her must have done their magic. Her headches have mostly dissapeared, except for a couple bad relapses. The mouth sores are getting better, and they're doing a good job of managing the pain.

Hopefully, they'll be sending her home soon. But we don't really know when.

Oh bother.

2009-06-11T16:00:00.000-05:00

The doctors have decided to admit Melissa to the hospital again. She has gotten some mouth sores (pretty common with some of the chemo) but she had a slight fever this morning and that always spooks them, especially when her blood counts are so low.

The doctor said she'll probably be out by Sunday, at the latest. I'll keep you posted with any news.

Cat Scan

2009-06-09T18:45:00.000-05:00

This isn't leukemia related at all, but it's REALLY CUTE.

Ziggy sat on the scanner.

Link to larger size.

Lah dee dah, update!

2009-06-09T18:43:00.000-05:00

From Melissa, cross-posted from Livejournal.

You guys have got to be sick of hearing about my sick ass by now, huh? That's all I ever talk about! But here's the latest.

Last week (6/1 - 6/5) I was in the hospital for my last round of chemo. The Wednesday before that I got a bone marrow biopsy. Now everyone I've talked to said that my biopsy came back clean on the most sensitive level (molecular - that's right, I don't even have cancer in my molecules) except if you ask my actual doctor who insists the results aren't back yet. O.o I guess it's possible that everyone else was looking at a different test... but it's a strange thing. So I guess I'm waiting until I talk to her in person on 6/19 to get the real truth on that.

Speaking of squeezing the truth out of Dr. Larson, once again they decided to spring intra-thecal chemo on me at the last minute. In case you need a recap, that's where they do a lumbar puncture, remove some spinal fluid, and replace it with chemo drugs to decrease the risk that I have a nervous system relapse. The problem with this (bwahahaha - one problem anyway) is that chemo drugs make my brain angry. And by angry I mean intensely painful unless I lay flat on my back. Coming back to the original intent of this paragraph, I spoke with the good doctor after I had this intense headache for two weeks last time they did this and she agreed that the risks may outweigh the benefits. Which is why it irked me that instead of calling or visiting my room to speak to me about having doubts in that decision, she sent some other doctor to hardball me. The phrase "Well you're going to need it anyway so you might as well get it now" was thrown about. Sooomeone just lost some professionalism points. The thing is, last time she said she was afraid it had caused chemical meningitis and was unsure she wanted to do any more of this on me. *Massive eye roll*

Anyway, I'm home now. I'm sick to my stomach a decent amount of the time and I have a bad headache, but I went to clinic today and my numbers were good. I'm getting by, and I'm definitely medicated (so don't you worry there, darlings!). I'm thinking about going back to work. Not just now - just thinking. Maybe in July. I think I'll need more IT chemo, but if indeed I'm in molecular remission my chances of relasping are insanely low... so maybe I'll get back in the swing of things again soon.

Woah!

2009-06-08T11:21:00.003-05:00

Melissa just texted me and said that they're giving her some IV caffeine for her headaches.

I've joked about such a thing existing before, but never thought it actually did! Where do I sign up for one?

Then again, you'd miss out on the sweet, sweet taste of coffee. Hmmm.

Home again, home again - Jiggity jig

2009-06-08T10:47:00.002-05:00

I forgot to post on the day due to sleepiness & excitement, but Melissa came home from the hospital on Friday afternoon. Like usual, they let her out just in time for rush hour.

The doctors decided that she needed another dose of Intrathecal chemo (IT Chemo, they like to call it) which they gave her the morning before she went home. The procedure went fine, but the side effects are starting to show. Hopefully, they won't be as bad as last time.

She's at the clinic now for her bi-weekly blood draw. Should be just routine.

Last night we made sushi with Amy. It was her first time and she really seemed to have fun. Melissa is, of course, not allowed to have raw fish, so we used our favourite homemade sushi ingredients: roasted garlic, crumbled bacon, tempura avocado & sweet potato, cucumber, and fake crab. I should have taken a picture.

Molecules and stuff

2009-06-03T17:15:00.001-05:00

Melissa's biopsy came back. According to the molecular test, she's leukemia free!

Pretty sweet, eh?

Once more, with feeling.

2009-06-01T16:52:00.001-05:00

I think I've used that title line before.

We're back in the hospital for Melissa's (hopefully) last round of chemo. She's in room 1007 Kellogg, if you'd like to send cards or anything. Still no fresh fruit or flowers, please. She should only be here a week, so it's probably still a better idea to send stuff to our apartment.

Melissa would like me to leave you with the following words, "Choco-Choco Milk, Y'all!"

It's been a while...

2009-05-27T21:33:00.000-05:00

From Melissa, cross-posted from Livejournal.

And yet I'm still just posting leukemia-related chatter! Here's the scoop. You may or may not know that today I had another bone marrow biopsy. If their fancy tests determine that I am in complete molecular remission (yes, not even a trace of cancer in my molecules) then it will have been my last. You'll be glad to know that it was as easy as the last one was difficult. Just one stick and a fantastic nurse doing it!

Also important, I'll be going into the hospital again on Monday for my last round of chemo. The idea is that I will be released on Friday and get to deal with all the side effects at home, under the care of my wonderful fiance and mother. I'll have my cell phone as per usual if you feel like calling. I'll be sure to let you know if, as usual, they decide to keep me longer for whatever reason.

Today has been a good day. Sure, biopsies hurt, but I'm a little more OK with them since I agreed to give a butt-load of bone goo to a research study each time I have it drawn for my own purposes. Maybe 20 years down the road someone is going to look back at the barbaric things I've had to go through and sudder. Maybe 5 syringes of bone aspirate per draw from me will help that along somehow. It makes my mind easier, anyway.

On a side note, after the procedure and a quick pit-stop to get a hug from Teddy at his office despite his busy workday, Mom and I went out for Thai. I haven't had much of an appetite lately, but I ate my entire plate of glass noodles, veggies, and shrimp in a delicate sweet sauce. It looks like an utter dive here on 41 in Highland, but sometimes they really hit the mark. It was delicious!

Box of crayons

2009-05-27T19:15:00.001-05:00

Melissa's bone marrow biopsy went off without a hitch today. They had booked the Hematology Clinic's Head of Nursing to do the procedure. She's the same one who did her first biopsy at Rush. A big, burly, irish woman named Sharon. After the last mucked-up biopsy, we made sure to get someone with fantastic forearm strength - and Sharon did not disappoint. I'm afraid I don't know any more of the details; today was the first day of our "Creative Summit" at work and I had a presentation scheduled for the exact time of Melissa's procedure. So, I'm typing this on the train after 13 hours at work.

Melissa stopped by to see me after she was done at the hospital and had nothing but good things to say. Said it hurt a bit more than before but it was worth it to get it done in one try. She was also pretty drugged up when she stopped by, so she didn't say much else. It was fantastic to see her, though - it was hard not to be by her side the whole time. That really calmed my nerves for the rest of the day.

She's scheduled to go in to the hospital on Monday for her final round of consolidation chemo. Hopefully, she'll be getting out on Friday.

Back in Black

2009-05-11T18:19:00.002-05:00

Modern medicine is a hell of a thing. It seems that everything that makes you better causes problems somewhere else - and then you need something else to get rid of the bloody side-effects.

Chemotherapy is the most obvious example, but there are so many more. It seems like every drug you take has the potential to make you sicker than the disease you're treating. This is, of course, where the countless amounts of clinical trials and case studies come in, with a med-school training that helps you learn the balance of treating disease.

In the end, we do a heck of a job making sick people better. But the more we learn, the more we must realize that we barely know how the human body works. Sure, we can fill volumes on how the Lymphatic system works - but there are so many more things that we haven't even scratched the surface on. Western Medicine is only now starting to accept some of the thoughts crafted over a couple thousand years by Eastern Medicine. Why must they be exclusive?

I'm not sure where I was going with all of this, but I'll give you a little update before I go.

Melissa is doing well. She's having some bad headaches, but is feeling good otherwise. It's so good to have her home. The cats are loving it.

Erin & Elaine visited for a week and we had a fantastic time. Nothing too exciting - we just hung out, played Rock Band, ate a lot.

Melissa and I made butterscotch caramels for our moms on Mother's day and they turned out pretty darn good. I had never made caramels before (though I have watched Melissa and people on Food Network make them) so I was really worried that they wouldn't turn out. I guess my nervousness manifested in paying extra attention to everything so that I didn't screw up!

I wish I could do more for Amy. She has been a godsend these past few months. I'm pretty sure that I would be sitting in a padded room somewhere if it wasn't for her being here. She's been supportive, caring, helpful, good humored, and generally wonderful (though if she asks, tell her that I said she's a meany-head). I hope she knows how fantastic it's been to have her here.

My mom, also, has done so much for us. From small stuff, like picking up my laundry - to big stuff, like listening to my endless ramblings when I just need to talk but haven't had enough sleep and don't have the good sense to just shut-up and go to bed (which is about how I bet any of you still reading this are feeling). I took her out for lunch yesterday, and it was just nice to sit and spend time with her for a while.

Okay, this post is threatening to go on forever if I don't stop now. Stop sitting in front of a computer screen and go enjoy this lovely evening.

Frabjous Day 2.0

2009-05-06T15:33:00.000-05:00

Melissa's coming home tonight!

Ups and downs

2009-05-02T19:55:00.001-05:00

I just got back from picking Erin & Elaine up from the airport. They're here for the whole week, which is fantastic.

Melissa was feeling lots better today, but it looks like she has an infection in her intertines, so more antibiotics and a few more days before we can go home.

It's been 3 weeks. I'm not sure if it feels like the time has passed quickly or has dragged on slowly. Both, I guess. Sometimes the hours last for days, but the days pass in a wink of the eye. Every few days, the doctors tell us, "just a few more days."

Calm seas

2009-04-28T14:21:00.001-05:00

The procedure went smoothly this morning. Melissa's taking a nap now.

Almost there, almost.

2009-04-28T00:12:00.003-05:00

A little after 5pm central today, Melissa finished her second round of chemo. (Woo!)

She'll still be here a couple more days. The doctors are waiting for the infection on her side to get a little bit better (It's loads better already, but still has a little ways to go before being 100%.) Also, they're going to give her an intrathecal dose of chemo before she goes home. Basically, it's a small amount of one of the chemotherapy drugs injected into her spine.

Sounds scary, I know. But from what the doctors & nurses tell me, and from everything I've read, it's pretty simple and routine. Still though, scary.

Her treatment schedule is a little different from the model for Acute Promyelocytic Leukemia because her white blood cell count was so high when she was first diagnosed, at least, this is what the doctors tell us. Usually, patients only recieve 3 days of Idarubicin (or Daunorubicin) given for 15-30 minutes a day. Melissa has gotten those 3 days as well as 5 days (overlapping) of Cytarabine, which is given constantly over 24 hours. The next (and final) round of chemo will only be 4 days. I'm not sure about which drugs will be used though.

I'm including this technical info because I've found a couple blogs of people's stories of their fight with this type of cancer and I hope that someday, someone might stumble across this and it will help them in some way. A boy can dream.

Ha HA!

2009-04-21T16:01:00.002-05:00

Posty posty post. This is Melissa. Teddy's tried to get me rights to post on my own for some time now, but it seems my gmail eats the confirmation email every time. Anyway, I'm doing well. Wiped out from chemo already, but up and about nonetheless. <3 I'll hand the reins back to the more competant bloggers now.

Little Good Things

2009-04-21T13:48:00.004-05:00

There are a lot of doctors here. A LOT. Between residents, fellows, attendings, floor doctors, and specialists, there are a lot of people who may stop and poke their head in to Melissa's room during the day. Her main doctor, however, is Dr. Melissa Larson. She's one of the professors of Hematology here & happens to be my absolute favourite.

All morning, doctors and nurses have been butting in while Melissa's been trying to nap. As a result, there hasn't been much napping. Dr. Larson just stopped by a couple minutes ago, but she saw Melissa napping & came over to talk to me in the lobby instead because she didn't want to wake her. It may seem like a little thing, but it's so rare that it's amazing when it actually happens.

Most everyone here is very friendly & competent, though. One of the Nurse Assistants (they call them Patient Care Technicians here) knew she was going to have Melissa today so she made sure to wear her Hello Kitty scrubs and socks.

Like I said, it's the little things.

Pizza, etc.

2009-04-20T19:52:00.000-05:00

We were able to move back upstairs on Friday. I had the post typed up but forgot to send it in, apparantly.

The docs were talking about sending Melissa home for a few days to rest before they started Chemo, but they went ahead and started it. Better to get it over and done with. Her infection is clearing up nicely - the other day after one of the doctors remarked that the fluid was clear, and that was a good thing, Melissa restrained from replying with, "My juices are running clear? Does that mean I'm done? Shouldn't you check to see if my wing joint is loose?"

She cracks herself up.

Other than that, things are going generally without incident. Just a lot of sitting around & waiting. Right now I'm sitting in the lobby waiting for Pizza.

We've been keeping busy with watching Monty Python's Flying Circus (on loan from our friend, Ryan) and whatever Netflix sends us. I've been pretty busy at work, too, which helps fill the day.

The pizza should be getting here soon. I'll check in with you later.

le Grr

2009-04-16T12:25:00.001-05:00

Melissa was released to be moved back upstairs yesterday, but they don't have any rooms available yet.

Boo. Hiss.

Hopefully soon.

2009-04-15T08:49:00.003-05:00

Melissa was sleeping when I stopped by to drop off her breakfast (croissants and conchas, breakfast of champions) but her nurse said that her vitals were holding steady all night and she'll probably be able to move back to the 10th floor today. Cue: huge sigh of relief.

Before we moved downstairs yesterday, we tried to sweet-talk a nurse on 10 into wrangling one of the bigger rooms (with a couch!) for Melissa. We'll see how that goes. It'll be her 10th room since this all started.

Moving again

2009-04-14T16:06:00.000-05:00

Melissa's blood pressure is a little low because the infection under her arm is a little worse than they thought earlier. As a result, they've moved her down to the ICU to keep a closer eye on her. It looks like they're going to try to make a bigger hole and drain it a bit faster.

She's feeling pretty good, though - no pain or anything, so that's good. Looks like they're probably going to hold off Chemo until this is all done.

Once more, with feeling.

2009-04-13T17:36:00.000-05:00

Saturday evening we found ourselves in the ER at Rush. Melissa had an abscess on her side that had ruptured (turns out that's what was causing that rash thing.) The hemotology/oncology clinic isn't open on the weekend so they told us to just hop down to the ER and get it checked out. We had meant to go Saturday morning, but Melissa and I somehow... mistakenly... ended up taking a 4 hour nap.

But it was no big deal, they gave her some tasty drugs, lanced the thingy, and sent her upstairs to trusty ol' floor ten. (She was scheduled to come in Monday anyways.) Of course, it took 6 or 7 hours for all of that to happen,but that's what you expect with the ER.

We spent Easter here, which wasn't too bad as it mostly consisted of eating candy & then passing out in a candy coma. We brought Melissa some Easter ham & kielbasa and my parents brought her even more candy.

She starts chemo tomorrow, only one day behind schedule - so not too bad overall.

Woo hoo!

2009-04-06T15:33:00.001-05:00

We just heard from to doctor that Melissa is in complete remission! She goes back into the hospital in a week (monday 4-13) for 7 days for consolidation chemo.

Picture Post

2009-04-06T10:00:00.006-05:00

Here are some pictures that I've been promising to post.

First a picture of Hungry, the monster from recent Weight Watchers commercials. I don't care much for WW, but the little monster is adorable. I made this little plush fellow for Melissa for Valentine's day.

These are the crocheted flowers that my sisters and both of our moms helped make for Melissa while she was in the hospital and not allowed flowers. They're really fantastic.

Our friend, Michelle, also heard that Melissa wasn't allowed real flowers...

...And so she crocheted some too! Here's Melissa getting a little sniff.

The Latest

2009-03-30T11:45:00.001-05:00

From Melissa, cross-posted from Livejournal.

So I've been at home a week, today. I'm getting stronger as time goes by but it's still a rough road. I'm not done with treatment yet, either. I have two more rounds of consolidation chemotherapy, one lasting a week and the second four days. I should expect them to be considerably easier than the first, because I'm starting them considerably healthier. On Monday I have my second (third, if you count the first failed attempt) bone marrow biopsy. Those aren't fun by a long shot, but they're not as bad as you might think. They numb you up pretty well and it's just... uncomfortable. Not really painful. Of course, it's hard to get around afterwards for a couple days as I recall. But I wasn't in much of a position to move about last time, either. I'll let you know how it goes, but I'm not terribly worried. Well, except for the bruise that was JUST starting to fade... I'm of half a mind to post a picture this time, you have NEVER seen such a bruise as the one I have on my ass. Hehehe!

Anyway, that's the update! I'll try to keep you up with everything going on after this and when I'll be back in the hospital for extended stays. What's everyone else been doing?

Catching-up

2009-03-27T11:32:00.003-05:00

I haven't updated in a week. Whoops! Mainly because things have calmed down, for the most part.

Melissa went to the doctor on Monday for a little post-exit checkup. The doctor was very happy with everything and, to our surprise, had us schedule her next appointment for 2 weeks from that day. We had been told earlier that Melissa would have to see the doctor twice a week for a while, so that was a tremendous relief.

Unfortunately, we also were told earlier that she might be able to do her follow-up chemo treatments out-patient, but it seems that she'll have to actually stay the whole time. The first round will start in a week or two, and she'll be in the hospital for only 5 days. The second will be a few weeks after that, and will require only a few days in hospital ( I think).

Even so, the outlook is pretty sunny! Melissa is feeling great and getting her strength back. Our friend, Vanessa, stopped by for a couple days & we all went out to dinner last night, and then out for ice cream. Mostly, we've just been taking it easy - which is what we really need.

O Frabjous Day!

2009-03-20T10:19:00.000-05:00

Melissa's coming home today!

A light?

2009-03-19T16:31:00.000-05:00

From Melissa, cross-posted from Livejournal.

Is there a big bright light at the end of the tunnel? They're talking about sending me home... as soon as tomorrow or this weekend. I'm not sure I can actually get my hopes up. It's just so big.

I'm feeling great, other than these nervous butterflies of hope.

The Waiting Game

2009-03-16T20:48:00.000-05:00

From Melissa, cross-posted from Livejournal.

Right now it's all about waiting for side-effects and potential infections to clear before I can go home. Specifically, there is a large lump under my right armpit that is not availing itself to diagnosis; this one is driving me crazy just from not knowing. Anyway, I feel pretty great and most of the really unpleasant stuff seems to be going away. Day by day I am a bit restless but having fun with Teddy and Mom.

Insurance seems to be taking care of me well, so far. I don't have all the info yet, of course, but it looks like most of everything is covered. That was a real concern to me, of course. I know health insurance can get... picky. But I feel better about it looking at my claim status.

What's new with you guys? Anything fun going on out in the real world? Hospitals are only so interesting.

Reindeer Flotilla

2009-03-13T08:45:00.004-05:00

At the risk of renaming this blog "I'd Like To Buy a Bowel," the following will be one more, and hopefully the last, update on Melissa's tummy issues. The message is as follows:
It's getting better! Woo!

End of Line.

Okay, actually, things are going pretty well. As I said, Melissa's tummy has decided that being possessed by Satan is no longer a good idea. She finally got a good night's sleep last night, which always helps, it seems.

She got tired of her hair falling out and had it shaved. As promised, I have pictures!
Here are the lovely wigs that Zoe, Erin, Elaine and I picked out a couple weeks ago.

Click on the images to links to full-sized. I'll put more photos, as always, on our Flickr page.

The last picture is of Melissa, head freshly shorn, and Mary, the LPN who shaved it for her. Wednesday night, we gave Mary some of the pizza we ordered and so yesterday she brought us some Harold's Chicken. (A local, south-side chain that Melissa had never had before.) Melissa has finally had a good appetite, so I let her eat most of it - so I think I might be stopping by Harold's for lunch today.

Quick Edit: I almost forgot to mention, the lovely scarf that she's wearing is from our friends in Florida, Michelle and Eric.

a thousand years with robots

2009-03-11T21:44:00.000-05:00

Sorry that I haven't updated in a while, it's been a busy couple of days.

Melissa is still in the hospital. She had some stomach troubles & they discovered that she has a little infection so they're getting that cleared up before letting her out. So she's getting some antibiotics, which doesn't make her stomach troubles much better.

She has had an appetite today for the first time in days, so we capitalized on that and brought in lots of yummy food. We ordered pizza from Renatti's for dinner and Melissa ate a good bit of it! (it was delicious too!)

She's finally starting to lose her golden locks of hair, which doesn't seem to phase her much. She even finds the aspect of shedding like a cat to be humorous. Although I have a feeling it's because she's always wanted to shave her head, and now she has a reason.

TO almost even Rhymes with Buffalo

2009-03-09T09:52:00.002-05:00

Melissa might be released from the hospital today, but more likely some time in the next few days. She is done with what I like to call the "scorch and burn" phase of chemotherapy. Next, they send in the infantry to clean up the stragglers. From what the doctors say, she'll be going in twice a week to check blood-counts and to receive these "touch-up" chemo treatments. After that, I think it's just pills for a couple years. Have I made this analogy before? I'm too tired to go back and check.

Melissa has been experiencing some, let's say, intestinal discomfort. Other than that, she's in pretty good spirits. She's excited to get home and see the cats, and generally to get the heck out of the hospital. I plan on spoiling her with anything she feels like eating for the next few weeks. (read: asparagus and cheeseburgers, 24/7)

You'll all be glad to know that we bought Melissa some pajamas and she has been wearing pants for the past few days. This has done worlds to improve her hospital cred.

Wheeee

2009-03-06T05:47:00.000-06:00

From Melissa, cross-posted from Livejournal.

So sitting around the hospital isn't great fun, but I'm taking it in stride I think. All the friends and family support really makes it easier - thanks, everyone!! I'm on my last few hours of chemo, so hopefully it's all downhill from here. Just watching for infections, then waiting for my body to recover from the cure.

I've gotten a few tubes removed from various parts of my body, and I'm moving around way better. The most irksome thing about this, possibly, is that they're accusing me of not eating because I have lost some weight from the treatment. ARE YOU KIDDING ME? I eat like a horse - I have people bring me food all damned day! GRAAAAHHH!! Of all the stupid things to accuse me of. Surliness? Sure. Abusing visiting hours and guest limits? Ok. Being too damned cute? Well duh! But not eating...? The nutritionists strategically stop by at mealtimes now. Grrrr.

In the long run, though, I'm doing better than can be expected. I said it before but I'll say it again - it's because of all your warm wishes and support. Thank you all for everything.

2009-03-04T22:05:00.001-06:00

After watching an episode of Stargate SG-1, I took a walk downstairs to grab a couple sodas. As I walk back into the hospital room, I see Melissa curled up on her side, snoring softly into her pillow. Of course, I am now wide awake and couldn't fall asleep if you paid me. I've been tired so early on nights I sleep at home, but if I stay the night here, I can easily stay up all night.

Melissa got her "good friend" taken out today. The difference in her movement these past few days is remarkable. It's refreshing to see her up and about.

The nurse just hooked up her last bag of chemo. In 24 hours, she should be done. Then we just have to wait to make sure it all worked.

Berry Pickin' Time

2009-03-03T09:34:00.002-06:00

Ever since the doctors installed the central catheter in Melissa's chest, we've been trying to get them to take out the Quentin catheter in her femoral vein. They were afraid of bleeding and so wanted to leave it in until they felt a little safer about it. Yesterday, they finally took it out.

Melissa should be able to get up & walk around a little more easily now. She has been moving about & sitting in her chair for a few days, but it wasn't the easiest or most comfortable thing to do. Now, they just need to remover her "good friend Foley," as she likes to call her Foley catheter, and she'll be dancing.

She's been getting a lot of cards and gifts from friends and family & loves when I stop in before work with the pile of mail.

I should get back to work. Just wanted to update.

Happy Casimir Pulaski Day

2009-03-02T08:46:00.002-06:00

No new news yet today. I stopped in around 7:30 and Melissa and Amy were sleeping so I dropped off a thermos of coffee, kissed Melissa’s forehead, and walked to work.

Today is my first day back since this whole thing started. It’s a little odd. I won’t be able to grill the doctors on any little thing that pops into my head. I won’t be able to annoy Melissa constantly with “Are you sure there’s nothing I can get you?” I won’t be the first line, like I’ve grown accustomed to.

I suppose I feel much like many of you do, receiving secondhand information and feeling a little helpless.

But really, it’s not so bad. The hospital is about 2 miles away from my office building. I can hop on a train or jump in a cab and be there in a few minutes. I’ll be spending the evenings with her, and might spend the night a couple times.

And I know that Melissa is in good hands. Her mom, Erin, and Zoe are taking good care of her. I am so thankful for all the support they have given to Melissa, and to me. And continue to give.

There's a kind of hush...

2009-03-01T12:06:00.000-06:00

We had a pretty full day yesterday. In the morning, our friends Tim & Kim stopped by the hospital to visit. They brought Melissa all kinds of fun Hello Kitty things. She also got a package from Eric & Michelle in Florida, full of stickers, colouring books, crayons, fun scarves... and bridal magazines (you can't see it, but I'm rolling my eyes right now, Michelle.) Other friends, Brian & Vanessa, spent the rest of the day visiting. It was good to see & hear from friends; I think it really helped Melissa's spirits.

She's been getting up a little each day and has been in much less pain lately. Her mom says that she had a really good sleep last night, and she's taking a little nap right now.

I'm out of vacation time, so I think I'll be headed back to work tomorrow. Luckily, I work about two miles from the hospital, so I should be able to come here right after work each day. I wish I was able to stay with her all the time, but I know that Zoe, Erin, and her mom will take good care of her while I can't be here.

The difference between a cow and a bean...

2009-02-27T17:00:00.000-06:00

On the trek to the hospital today, Zoe, Erin, Elaine, and I stopped at Sonic Drive-in to bring Melissa a bite to eat. We, of course, had a few bites for ourselves as well. I cannot express the elation I felt a few months ago, a year after I found out that I was diabetic, to discover that Sonic has a low-sugar cherry limeade. It was an instant reaffirmation of my will to live.

Melissa is feeling pretty darn good today, all things considered. She hasn't felt any real nausea yet from the chemo, just a little tiredness. They wheeled her downstairs for a couple CT scans today, just to check things out. And then a leg ultrasound to make sure her recent leg pain isn't due to a blood clot. We're pretty certain they're just sore from walking around a bit yesterday.

I bought her season 3 of The Muppet Show, and I think she and her mom have really been enjoying watching them. We're still trying to find season 2, but my sister might pick that up today.

Still here

2009-02-27T09:04:00.002-06:00

From Melissa, cross-posted from Livejournal.

So that's a hideously inappropriate title, but it's a fact. Leukemia hasn't kicked my ass quite yet. I'm not having a lot of fun hanging around the hospital all the time, but I'm here and in good spirits.

I understand Teddy's been keeping most of you updated, but here are the fast facts:

*95% chance one round of chemo will send this shit into permanent remission.
*I'm starting chemo today.
*Hospital food is pretty gross.
*I'm not wearing underpants RIGHT NOW. awwwh yeah.

I don't know how it happened, but it's pretty much the weakest leukemia ever. So hang in there; I am. And I'll try to keep you updated.

Blood work

2009-02-26T06:44:00.001-06:00

Well, there wasn't much sleep to be had last night. Melissa's nurse kept her (and me) busy with pumping in some plasma, platelets, etc. And then checking her vitals at intervals that seemed like she was in the room more often than out.

Melissa's platelets are up to 93, though. That's the highest they've been! For reference, she was at 21 when she first checked in and the doctors wanted her to be at a minimum of 50. (I believe the numbers are in thousands)

I know I've said this before, but she's supposed to start chemotherapy today. Here's hoping. Not that I want her to have to go through it at all, but better to get it done and over with as soon as possible.

As a final note, as much as Melissa would appreciate them, they do not allow live flowers on this floor. They deal with most of the blood cancers here and so the people are at a higher risk of infection or reaction or something. I've had to remove all the lovely flowers she has been sent so far (thanks Brian & Vanessa, Cheryl, and Erin & Elaine!) which stinks, but is understandable... I guess.

New room, again

2009-02-25T22:18:00.000-06:00

Melissa has been moved to room 1009. I'm going to try and sleep.

2009-02-25T19:49:00.000-06:00

Around 3pm, Melissa finally had the main line put in. She has been in a bit of pain all day from her swollen jaw, sore hip, and legs that are achey from too much walking around yesterday.

While she was downstairs, Erin, Elaine, Zoe and I went wig shopping. We found a nice pink and black wig with flippy ends & a big pink bouffant. I'll post pictures later.

The nurses are letting me stay the night, which is nice. Sadly, the doctor wants to move her room again. It's only down a floor - from the 'oncology' floor to the 'hematology' floor. The nurse says the floors are basically the same. She paged the doctor to ask why we're bothering with the move but the doctor hasn't called back in a couple hours. Melissa is, of course, frustrated at having to move again. This will be our 7th room in 8 days. It would be nice to ask the doctor about it, but I don't suppose I'll hear from her tonight.

2009-02-24T19:30:00.000-06:00

Melissa is out of the ICU and onto a regular floor!

2009-02-24T13:33:00.001-06:00

One of the doctors just called - they finally got the results from the blood test ('fish' test, they called it?)

They confimed the diagnosis of Acute Promyelocytic Leukemia (type m3) which should be easily cured with a little chemotherapy.

2009-02-24T12:27:00.001-06:00

During the bone marrow biopsy yesterday, I told Melissa that as soon as it was over, she could have some of the spaghetti that her mom made according to her Grandpa Carl's recipe. She told the nurse that she felt like Bill Murray in 'Little Shop of Horrors' waiting for a candy bar after he got his teeth drilled.

"If I'm good, I get a candy bar! CAAAANDYYYY BAAAARRRR!"

The nurses were cracking up. Melissa says it was the Morphine talking.

She's feeling great today and will move upstairs as soon as they have the room ready. They won't put the Main Line in until tomorrow, which is good, as I think she needs a day to eat.

2009-02-23T21:35:00.002-06:00

After hours of hungrily waiting for the doctors to perform her bone marrow biopsy, Melissa had it done around 3 pm. She was cracking jokes and in good spirits during the entire procedure. She's still in the ICU, but will hopefully be moving upstairs soon. Her platelets are coming up nicely & her bruises are slowly fading away. Tomorrow is probably her first round of chemotherapy.

Our daytime nurse, Abbie, gave me a tube of lotion today and so, right before I left for the night, I rubbed Melissa's hands & feet. Her skin has been really dry, so she felt much better afterward. Sometimes it's the little things.

Speaking of Abbie, she has been a truly fantastic nurse. From answering any dumb question that I send her way to making sure that Melissa is comfortable at any given moment, she is really helping all of us with this rough time. If I can't be there at any given moment, I feel better knowing that Abbie is there, looking out for Melissa. Honestly, I'm just glad that she puts up with my bullshit. Someone has to!

2009-02-23T13:12:00.000-06:00

Melissa should be getting a bone marrow biopsy today. She wanted to participate in a study where they take a little extra marrow and use it in their research, so they'll be doing that. They took her to get a 'muga' scan now, which is a fancy heart scan.

She might be starting chemotherapy as early as tonight.

2009-02-23T09:14:00.002-06:00

I'm headed up to the hospital. She should be getting a bone marrow biopsy today or tomorrow. We're hoping she'll be moved out of the mICU today, too.

2009-02-22T23:59:00.000-06:00

Okay, so, here's the latest.

Melissa's doctor's are pretty sure that she has Acute Leukemia. She wasn't responding to treatment as they hoped and so they did some more tests and attempted a bone marrow biopsy. The blood tests indicated Leukemia, but her bone was too hard to get through to get the marrow.

On a lighter note, after her biopsy, Melissa refused morphine so that she could propose to me when she got back to the room. We're engaged now.

She has been moved to Rush Medical in Chicago. They're going to attempt another Bone Marrow biopsy tomorrow or Tuesday to make sure completely that it's Leukemia before they start chemotherapy. The doctors think that it's type "m3" which is, they tell me, the easiest type to cure.

I'd write more, but Melissa's mom is glaring at me with contempt because I'm typing and not eating the spaghetti that she cooked.

2009-02-20T04:21:00.000-06:00

If I haven't told you yet, Melissa has been in the hospital for a few days.

Tuesday afternoon, Melissa was admitted to the hospital. For the past month, she has been bruising without apparent cause (she's self-admittedly clumsy at times, so she didn't think too much of it) and getting really bad nosebleeds, sometimes lasting up to an hour. We made a doctor's appointment for the first available time (in two weeks, of course )

The night before her doctor's appointment, she fainted. She told me she felt light-headed and, though she's never fainted before, felt like she might. I caught her and lowered her down to the ground as she blacked out. After a few seconds she was conscious again. We decided, with the help of my sister (who is a nurse), to wait until the next day and go to her appointment instead of heading to the ER.

The next day, talking to a nurse while signing in at the Doctor's office, we were told to go across the street to "Urgent Care" because that's all the doctor would tell us to do after he heard she had fainted. Urgent Care seems to be like an ER-lite. They got her in pretty fast, checked her out and took some blood. We waited around for an hour to get the blood work back and found out she was severely anemic. (which is what we expected) As we were headed out of Urgent Care on our way to the hospital, Melissa fainted again. She was already sitting, but this time it took a little while longer for her to regain consciousness. The doctor's and I moved her to the bed and they called an ambulance to move her to the hospital (which is, again, right across the street)

In the hospital they took more blood, ran more tests, and started her on a blood transfusion and iron supplements. The hematologist came and told us that it thought it might be ITP (Idiopathic thrombocytopenic purpura) which is a big, long word that means she's bruising, has a low blood platelet count, and they don't know why. Commonly, it's immune related, so her own body might be eating up the platelets that it's making. They started her on an IVIG drip (Intravenous immunoglobulin) and Prednisone (a steroid) to suppress her immune system. They also gave her a couple units of platelets through an IV, to try and boost hers.

This morning, she was feeling a lot better. She was sitting up while eating, and not feeling dizzy. She ever walked around the floor, which is about 100 times farther than she was able to walk the previous day. Strangely, her platelet count wasn't rising from the treatment as it should have, so they think it might be a similar, but different thing called TTP (Thrombotic thrombocytopenic purpura) - and they wanted to do a bone marrow biopsy for diagnostic purposes and start her on Plasmapheresis, which is basically taking out her blood and putting it through a sort-of dialysis machine to take out the plasma & mix the rest of the blood with fresh, clean plasma before putting it back in her. They didn't have the big machine to do the Plasmapheresis at this hospital (They're a pretty small, but very nice hospital) so in the afternoon they moved her down the road to a bigger hospital.

Right before I left, at the end of visiting hours, they were re-doing the blood screening (I guess they can't take the other hospital's word that she's O positive - they have to find out for themselves) and as soon as they got the results from that, they would start the first round of Plasmapheresis.

The funny thing about these disorders is that the only way you can tell which one you have is by what treatment they respond to. There's no test that says "okay, you have this." So it's a little maddening, just waiting around and trying to figure out what's wrong.

Melissa is generally in good spirits. She's really being a pretty good sport in light of all the needle-poking, and bitchy nurses (that's a WHOLE other story.) Her mom and one of her sisters are flying in from Seattle (actually, they just landed at O'Hare) to be with her. I took off of work and have been with her as much as the nurses have let me.

2009-02-19T09:13:00.000-06:00

I'm starting this blog with a few backdated posts from my personal blog.