MrbLOB9000

I’ve been doing well.  It’s odd finding out what normal is again.  I had been worse than normal/average to varying degrees since at least early 07!  Worse as time went on basically. I had a super persistant cough since late 07, went to the doctor about it in Jan 08 because it wouldn’t go away and had my first lump on my neck mid 08.  But anyway, even doing chemo I felt better than I did before chemo after a hand full of treatments but even after the direct effects of the chemo were gone (until the next one), I still wasn’t feeling actually good, just better than the terrible I felt before I started chemo basically.  Plus you can’t get any kind of rhythm going when 5 days of every two weeks suck (and not even specifically predictably suck, which day was the worst and actually how bad it was was fairly random).  Still trying to straight out my sleep schedule, going to bed early enough sucks but I’m doing it decently enough, it’s the getting up in the morning that sucks.  I feel slightly like an ass for complaining that I have to get up at like 8:30am or 9am, that’s sleeping in to many people, but I haven’t consistently gotten up at that time in at least a year and a half probably. 🙂  It also somehow sucks slightly more to live at home when you have to go to bed early and wake up early, I think it’s because there’s little to no time when there’s no one around.

damn it, was supposed to get my port flushed today, I forgot it was today. 🙁 luckily getting my port flushed isn’t a huge deal for them, so I don’t think it hosed anyone out of time or a chair for someone else or whatever (they just kinda put me anywhere that’s open for a few mins since it doesn’t take long).

For now I still have my port in, was going to wait at a minimum until my insurance kicked in (should be real soon), because I didn’t want to have to use clinic funding for them to have to put another one in if I needed chemo again. But ya, going to wait at least until after the first scan (so 6 months from when I was done with chemo). We’ll see what I decide, but for now it’s staying even though it’s kind of annoying.

Well, had an appointment with Dr. Dragon earlier today, went well.  Basically just felt for lumps, even though their pretty much isn’t any and none show on the PET or CT scans and then just talked some.  I’m basically officially in remission, and while their’s a low reoccurred or whatever still have to keep an eye on it to make sure.  I’m going to have an appointment with him every three months and have a CT and PET scan every six months (so every other visit) for a while he said.  I have to go in every month and a half to get my port flushed and to put some more heprin in (which I think is anti-coagulant) so it doesn’t clot in the tube.

That’s pretty much it.  So happy to be done with this shit, needless to say.

As the subject line says, just got the results of the CT scan and he said it was ‘totally normal’!  So I should be good to go and no more chemo!  Needless to say I’m pretty psyched.  I have an appointment on Wednesday, not super sure what that’s for but to reiterate the results and I guess to go over what I have to do going forward.  I’m also not sure just how out of the woods I am, I think I’m currently free of it, but how likely it is to come back and in what period of time or whatever, no idea.  I’ll let you know how it goes on Wednesday.

Well, Thursday was my last chemo, at least with this set of drugs and also total as long as these ones worked.  This weekend was one of the ones that suck a little less than others, so that was cool, was happy it didn’t end with a bang.  I had a PET scan today which I already got the results of, Dr. Dragon said they were totally normal.  So far so good, I have a CT scan tomorrow (well, technically today, since it’s past midnight but I haven’t slept and it’s dark, so that means it’s yesterday still… you get what I mean 🙂 ).

for a CT scan you have to take oral preporation meds and I forgot to pick them up Thursday and then forgot today all about them until about 8:30pm…  The oncology department closes promptly at 5pm, thought I was hosed.  I called (more…)

Had a chemo treatment last Thursday, now I’ve only got one remaining.  The chemo a few weeks ago was kinda like the last few before it, not as bad as some others.  This last one I wasn’t so lucky, it wasn’t the worst one I’ve had but it definitely sucked more than the last few.  Saturday sucked the most, slept until like 2pm, felt like shit and was tired of being awake so went to bed at like 6pm or 7pm and slept until like 12am and watched some TV and stuff until like 2:30am went back to bed, got up saturday at like 1:30pm feeling shitty but better than I did on Saturday.  Still not feeling that good, but decently better than Saturday and Sunday.

Only have one chemo left, which is awesome but still sucks because I do have to go and do this one more time.  A little less than a month after the last chemo I have to go and get another CT scan and PET scan both to see where we’re at and if I’m good to go.  I should be because the last PET scan was negative but don’t want to expect it 100%, becuase their is the chance something could be found.  If it’s negative then I have to go in every three months for a checkup with Dr. Dragon to make sure I’m still good to go.  I ask about my immune system, how long it’ll be messed up, he said he wants me to stay on the antibiotics and antiviral pills for three months, and then I guess we’ll see.  As for taking out my port, I can leave it in for a year and see what happens (go in once a month to flush it) or I can take it out any time after we’re done as long as I’m good to go.  It’s pretty annoying to have, so I’m probably not going to leave it in for a year, but I may leave it in for a little while, don’t know yet.  I’ll see what I decide later, not sure how big of a deal it is to take out, I think he said Bona, one of his nurses could take it out.

Last chemo was about the same as the one before, still sucked but more mild than some of the other times.  I drank another 7+ liters of liquid Thursday and Friday combined, so that’s definitely part of it I’d say.

My hair on my head is still thinning but still have a decent amount and it’s not gotten to the point where it’s patchy or anything.  It’s weird that it seems some grows back, less grows back than what fells out each time but some seems to (once I’ve let it grow for a little while, if I put my finger past the longest hair I can feel shorter hair prickling my finger, so that’s what makes me think some grows back).  The other odd thing is my armpit hair and pubes are mostly gone but my stomach and chest hair are barely less than normal.  Seems random.  A buddy pointed out that’s where lymph nodes would be (armpit, groin and neck seem to be the big spots for lymph nodes) but that’s probably just a coincidence.  My eyebrows haven’t changed so far, hoping they stay pretty much the same.  No eye brows isn’t a good look. 😛  But ya, whatever, not THAT worried about, if they fall out, so be it.  Nothing I can do.  I’ll trade eye brows in the short term for not dying. 😛

Oh, and on a totally unrelated note, the new BBQ Pulled Pork Slider at White Castle is quite good, check it out.  😛

The result of last chemo was less bad than some, I went into it feeling pretty good and Thursday and Friday combined I drank over 7.5 liters of liquid… which is over 255 ounces of liquid… all water except like a 24 ounce cup and a half of diet soda… so ya, slight amount of water. 🙂  As I think I’ve probably already said, they say I’m supposed to drink a lot of water to help push the chemo drugs through my kidneys and liver and whatnot.  But ya, it still sucked but was more mild than some of the times.  It doesn’t appear to be having a cumulative effect on how much it sucks for me like it does for some people, so that’s definitely good.

For about a week after my chemo I kind of have a bad taste in my mouth.  Not that bad but weird and kinda bad and is there much of the time.  I also realized that diet soda seems to make it worse especially if I drink it without a meal.  Juice or regular soda doesn’t have that effect.  Thought that was interesting and odd.

If I haven’t said on here how glad I am that I have chemo every other week, let me do that now… well I guess I just did, anyway, how it usually plays out is I go in for chemo on thursday and thursday and friday kinda suck, Saturday and Sunday usually blow pretty bad, one of the two worse than the other and monday is much better but still like slightly worse or about the same as Friday.  Tuesday is decently better but not 100% but good enough to go to work.  Some time between Wednesday and like Friday I’m feeling pretty decent and can eat mostly whatever I want and whatnot.  Well, if I had it once a week the cycle would basically restarted as I was starting to feel almost decent… I don’t envy people with harsher/not ‘well tolerated” chemo treatments, let alone ones that are once a week or more! Damn.

Going in for treatment is starting to become kind of a grind… I have 2 months left (4 treatments) and it kind of feels more daunting than when I started or even a few months in… I’m not sure what the differance is.  I don’t know if it’s coincidance or what, but it seemed to start feeling like more of a grind soon after I heard that the PET scan was negative.  Like I said don’t know if it’s actually related, but it’s possible, like somehow knowing that I’m probably actually doing better makes my subconcious think the rest of the treatments aren’t needed or something.  I don’t know, doesn’t make good sense but either way I kinda started dredding the next chemo the Tuesday after, basically as soon as my mind wasn’t pre-ocupied by the last Chemo.  And I just spelled dread like Judge Dredd… haha, anyway, ya, sucks but at least this didn’t set in on the inverse, 2 months in vs. 2 months left.  It’s not like it’s always on my mind though.

I’ve been taking it one day at a time, rolling with the punches and dealing with the now and trying not to worry about what’s to come and I think I’ll be able to stick with that for the remainder as well.

Last chemo kinda sucked but mostly wasn’t too bad, only Saturday sucked extra but I ended up sleeping the vast majority of the day.  I went to bed on Friday at like 1am or 2am or something and then woke up at like 1pm, after waking up once or twice and taking a piss and going back to bed a couple times while it was light (if I feel shitty often times the fix is to just sleep more), I felt better than I did the other times I woke up but still felt shitty, ate dinner at like 5 or 5:30 and still felt like shit, ended up going to bed at like 7:30pm and then woke up at like 12am feeling better than I had earlier but still not great, watched some TV until like 2 or 2:30 and then went to bed again and slept until like 12pm or 1pm.  It was pretty crazy!

But ya, other than that, it was about normal.  Nothing else really to report, been doing alright.

Good news first, I got a PET scan last week.  I think the PET scan was to check if the remaining few lumps I’ve got are cancerous, Dr. Dragon said that the lymph nodes may not go back to normal size because of scar tissue (but have gotten way smaller anyway), so even though I have a slight amount of bulkiness and a few lumps left they may not be cancerous.  We got the results back and it was negative.  So that’s great news.  Dr. Dragon also said that my progress was “exceptional” or was it “excellent”?  It was something that meant great and started with an ‘e’. 🙂  Either way I still have to finish out the rest of my chemo, but ya, it’s good to know it’s working.

Anyway, about the PET scan, it was a little weird.  They put you in a room and inject you with some radioative stuff.  It’s kinda weird when the stuff getting injected into you is in a lead pipe thing with (more…)