Long-Overdue Update

I'm so, so sorry that I haven't updated in ages. I've just been so beyond exhausted that I haven't been able to put it together to tell the story.

Seven weeks ago today, Michael got up and was so weak that he couldn't stand. He basically slipped off a chair and onto the floor, and couldn't get up, wasn't making any sense, etc. I called the ambulance and took him to the hospital. When he was first admitted, they seemed to think that it was just a medication adjustment, not probably a big deal though not good.

Two days later, they told me that his heart was working so poorly that his other organs were shutting down, and that there was a 50% chance that he would die, and that if he didn't die, it was probably still only a matter of time, even if they pulled him through this one. And they took him to ICU, and I was terrified.

And then, two days later, everything started improving. His kidneys started working again, they did another echocardiogram and his heart was working as well as it had been a year ago, and everyone perked up and stopped talking about him dying. But he was terribly weak and completely delirious for weeks. After two weeks, he started really getting better... they moved him out of ICU and to the cardiac ward... and he was there for another two weeks.

A lot of other stuff happened in the middle, but there are two important things... the most important is that when they were trying to figure out what was wrong in the ICU, they did a lot of body scanning, and they found some unexplained masses in his lower abdomen. After a biopsy and much waiting and testing, it turns out that he has lymphoma. T-cell-rich large B-cell lymphoma, to be precise. This is treatable but scary. And he will be starting chemotherapy relatively soon, and I am... well, happy that they found this, because if the other things hadn't happened, I don't think that they ever would have caught it, not until it really was too late, because no one was looking. But scared. I have been through too much chemo and cancer and death with people I loved over the last seven years.

The other thing is that he has been in bed for the last seven weeks, and so he is terribly deconditioned. They finally released him to rehab two days ago, so he can relearn to walk. So he can get strong enough to do the chemo.

It's been a long, long haul. I hope we're on the downhill part, now, but it's still going to be a long road.

Awfulness, Part I

So... when last I posted, we were in the midst of trying to figure out why Michael was getting these spells of feeling terrible, plus trying to get him well enough for the hernia/stomach surgery that was scheduled for the end of July.

Leaving out a good part of the middle bit... two weeks ago, he went in for his annual echocardiogram, and they discovered that his heart was pumping at 15% of capacity (normal, FYI, is about 60%). They immediately put him in the hospital and diagnosed congestive heart failure. And we've spent the last two weeks in the hospital... I say, "we" because I stayed with him the whole time.

The good news... I guess, if there is really any great news here... is that they put him on a whole lot of drugs, which he seems to be relatively ok with, and that the prognosis seems... well, ok I guess. He is relatively young. He's lost a lot of weight (and they said, for whatever it's worth, that if he had not, he would probably be dead by now). CHF is rarely completely reversable, but it can get a lot, lot better. And this explains a lot of the weird symptoms that he's had for so long, although no one has at all explained why it has been so cyclical. There's a lot of hope that maybe he'll really start feeling better.

The not-so-good-news... well, the condition in general. And of course, the surgery has to be postponed for some time until cardio clears him. And he's on a ton of medications which slow his heart rate (good) but lower his blood pressure (bad, because it wasn't high to begin with, and very low blood pressure makes you dizzy and confused). I don't know... it's hard to get any perspective about this right now.

I am worried and scared and overloaded and exhausted... so is he. But his weight is the lowest ever (378), and we are home, and we can rebuild.

Sunday again

Updating...

A thank you to everyone who has been so encouraging about the calorie thing... my plan, which I've been doing in sort of a half-hearted way this week, is to keep a rough count on the applet on my iTouch (have I mentioned how much I love, love, love, love this iTouch? Useful in ways that I never imagined.). This has been going pretty well so far, to the extent that I've been doing it. It's not ideal in some ways, but the ways in which it's not ideal kind of keep me from getting as insane about it as I would be likely to do with a more sophisticated program. I used to use... well, I've tried FitDay (not crazy about it but a lot of people really like it), MyFoodDiary (best of the online programs, if you ask me, but still not fast), SparkPeople (not my cup of tea but again, great for a lot of people), and then ultimately I bought the software for DietPower, which I think is a really excellent program if you want to track every possible nutrient, and you have the ability to do this without spending all your life obsessing about it. (In other words, if you are not me. You don't even want to hear about the Great Selenium Debate of 2008.)

Anyway, this little iTouch applet is great, it was free (Lose It, for anyone curious), it's really fast, and you can easily track the three things I care about, calories, carbs, and protein. And the days that I have kept track, I have lost small amounts of weight. And the days that I have not kept track... you guessed it, I haven't. So you would think that someone with half a brain (and I'd like to count myself in for at least half...) would put this all together and actually do that. Which is my goal for this coming week.

In all fairness, the day that I really didn't track... yesterday... was kind of a Epic Fail sort of day anyway. Michael's been having another incidence of these mysterious symptoms he gets... afternoon fever, edema, extreme fatigue, nausea... and he feels like death, and he's depressed as hell. Part of the trouble is that he gets up in the morning and feels relatively ok, but in a few hours, he's awful again. Anyway, yesterday, I took him for a drive, just to get him out of the house, and it just was one of those ideas that seems good and turned out just bad bad bad bad... he was uncomfortable and miserable, I was miserable because my happy plans had not turned out that way, he was more exhausted than he would have been otherwise... and we didn't exactly eat properly, either, although "not eating properly" for us these days isn't exactly an extreme thing.

The trouble is that I seriously have no idea what the right thing to do about this problem is. We go back to the doctor time and time again; he does tests, and he doesn't find anything. I don't think that he has a clue where to go with this next, and I also don't think that he takes it that seriously... he doesn't see the extent to which Michael is incapacitated; he doesn't see what it's doing to him psychologically, either. I just don't know where to go with it. I'd like to have someone else see him... but who? My sister keeps suggesting that we go somewhere like Johns Hopkins or the Mayo Clinic for a complete workup, but I have no idea if my insurance would pay for it, and the other problem is, doctors take one look at him and they think that it's all about weight, and they want him to have surgery. Yes, he's still over 400 lbs. But he has lost over 200 lbs., and he feels worse. If he were not losing weight, we would consider surgery. But as long as he is... and he is, when this stuff is not going on... that doesn't seem to me to be the right choice at this time. I need for someone to see past the weight and try to get to the bottom of what causes this fatigue, the fevers, the edema.

So I will call the doctor on Monday, for lack of anything else to do, and I will try to get him in to see him, although I have a hideous schedule next week, and doing this will be very difficult.

We will get through all of this. I know that. It just would be nice to be able to see the road ahead a little more clearly.

200

As of today, Michael has lost just slightly more than 200 lbs.

Which is amazing enough that I can't think of anything else to say about it right now.

Mostly Happy Updates...

Somehow the last week or so has gone by in a mad blur. No idea how exactly. But the grades are done, and the tree is up if not completely decorated, and some small parts of the house are sort of clean-ish. I'd be happier if it was about a week until Christmas rather than a couple of days, but that's always the way...

I'd be a LOT happier if the frigid weather + loads of snow + daytime sunshine wasn't causing huge ice dams on my roof. Which in turn drips inside the house by some magical and horrible process, soaking the bedroom carpet, soaking the mudroom, making me really irritated especially since this happened two years ago, so, yeah, I should have done something about it. Hopefully it will warm up later in the week, get rid of the snow, and we'll have a change to do something preventative.

But the great news is that Michael is actually feeling better. I have no idea why, but he's been almost his old self the last couple of days. Which makes me mega-happy... and his weight has gone down 30+ over the last 10 days as the edema in his stomach and legs has reduced (which kind of makes me jealous). He's now at his lowest weight ever. (Well, not EVER, as he keeps reminding me, but in this weight cycle. We'll start posting weight again in the new year.)

My father comes in tomorrow night... it will be a sad Christmas for all of us, with Mom gone, but we're trying. So now I just have to wrap everything plus finish putting together the most complicated practical joke Christmas present that I've ever given anyone... impossible even to explain... and hope that nothing goes awry. Fortunately, my father won't even notice if the house is filthy....

Sort of Better News....

On the brighter side... it seems like Michael is feeling a bit better. He's still not doing much, but that's partly because his knees are still unbelievably painful from the Sleep Study Experience From Hell. (I am thinking that he should probably have x-rays, actually, although it's unlikely that there's anything big going on... we see the doctor next week, so we can find out then.) But he seems better. More alert. More himself. A little happier, although impatient as anything and easily discouraged.

One of the worst bits for him is that during all of this, he acquired a huge amount of edema... fluid gain in the abdomen and legs. He's lost so much weight in general that he has a tremendous amount of loose skin on his abdomen, and when all this started, zoom.... it all filled up with fluid. He gained about 30 lbs. in about 2 weeks (while eating almost nothing, I should add). And every doctor has looked at it and gone, hmmmmm, but no one has seemed particularly interested or bothered. But for him, this is a Huge Big Deal. I mean, think about it... overnight you get 30 lbs. just hanging off the bottom of your stomach. Makes it hard and painful to move, and if you're a guy, makes it pretty hard to pee, too, which is probably too much information. But it's this huge catch-22... you have to get rid of the fluid somehow, and that's basically how you have to do it.... but it's a little tricky. And painful and irritating to your skin.

Anyway, 10 of those surplus pounds disappeared in 2 days, and another 2 today! So this is a really good sign. Of course, I've been feeding him all sorts of herbal diuretics and so forth, which is helping, but one way or the other, just seeing that go down is lifting spirits. And his heart rate has been ok, if still a bit high.

So here's hoping that when we see the doctor next week, his iron levels are still up, and maybe he'll actually agree to try the other heart medication.... and things will keep looking up. If the edema keeps going down, he can do some lower-body exercise, which will further help it decrease... so, fingers crossed!