Saturday, July 31, 2004

Saturday

Blech again!

Yeah, the effects are definatly cummulative. Anyway, just a post to say Hi, I'm alive and chemo sucks! The past day or two has been sleep, eat, pee, sleep. And thats what I expect tommorow to be like too. I'm kind of achy, and really, really tired. A wee bit cranky too.

Kyle is finishing up the drywall work for the bathroom today. In theory, I will have a toilet downstairs tonight. woo hoo!

Thursday, July 29, 2004

More thoughts for today

Today's treatment isn't sitting as well with me. I already feel Blah and Blech! Usually Blah waiting until Friday night and Blech until Saturday. I feel feverish, but I'm not (98.2).

But, while I was sitting in the infusion room today making idle chit-chat with the others, I got a great reminder of how it could be so much worse. The nice lady across from me (the one with the rugs), mentioned how she asked the doctor for a prognosis, and he said "14-18 months." Whereas mine is "80-90% chance of cure, and a long, normal life afterward."

So at least I got that :)

Chemo #3

Treatment #3, also known as Cycle #2, infusion #1, also known as the likley halfway point.

Went it at 9am, got done around 12:30. It took forever today! It was a full house too, with 2 nurses and 6 patients. Busy busy.

I also met a nice lady who imports rugs. She says she buys her rugs from the same place Kuristan does on Belgium. Kuristan sells them for $1k and she sells them for $200. So I have her card. :)

Anyway, I'm just sleepy right now. Time for napping!

Tuesday, July 27, 2004

Everything looks good for Thursday

My white counts are up around 16 again. YAY!! The nuelasta stuff really works.

Strangly, my red counts are up too. Red blood count, hemoglobin, and hemocrit - all up. This is a good thing, but odd. Chemo kills off all the blood cells, and I'm not on Procrit, so no clue how these went up. But I'm not complaining. They aren't up massivly or anything. For example, hemoglobin whent from 13 to 14.1. Both well within the normal range.

I am so, so tired. I could nap right now. I think I could pull a Kyle and nap all evening. Last night I fell alseep on the couch twice, at 5-ish and again at 7:30-ish. Both were about 30 mins. Then I was still dozing, so I went to bed about 10. Wouldn't you know it, I lay awake until 11:30. And it wasn't from the naps, b/c I was still exhausted.

Oh, have I mentioned I still have hair? I'm rather impressed. Its falling out, but not all gone. Whenever I brush it, or wash it, or even run my finger through it, a big wad comes out. But, its coming out evenly, so really, you can't tell. I can tell, but its not that obvious.

One last thing. I had originally planned on updating this daily. But really, there isn't that much to say. "chemo sucks" "I'm tired" "yup, still have cancer" "yup, chemo is still on Thursday" etc So, now I'm just going to update it when I actually have something to say. That is, things are going well, things are going bad, test results come back, etc etc. So, don't freak if there isn't a daily post. :)

Alrighty then, that enough babbling. Lunch break is almost over.

Saturday, July 24, 2004

Long time no post

Sorry its been so long. I've been busy and actually, *gasp* not around the computer. The good news is I am feeling much better. I spent most of my 30th b-day in bed napping, but since waking up around 3pm on Thursday I've been pretty darn good. Right now, I am over at Claire's house celbrating my 30th birthday with a bunch of friends. And hey, its 10pm and I am still awake. My parents are in town, so that is cool. Plus, thanks to my dad, mr Schneider, and Kyle, my half bath is almost done. After the concrete hardens tonight, we put in the toliet and sink, and then we will have a functioning bathroom downstairs. WOO HOO!!! No more trips up and down the stairs in the middle of movies and such. Anyway, the party calls.

Michelle says Hi!

Wednesday, July 21, 2004

Today, not so good

Blech!

This is probably TMI for some of you, but I feel like bitching. My entire food processing tract is messed up. No puking, but honestly, at this point at least things would be leaving. I've had horrible heart burn since about 1pm, and of course, I left my tums at home. I probably should have figured out a way to make a CVS run at work, but its not that close. And, err, I have an entirly new respect for being "regular." Never once in my 30 years have I expierenced the issues I am now. I'm "producing" just enough so the docs aren't seriously worried, but not enough to make me comfortable.

Now on a happier note, I turn 30 tommorow. WOO HOO!! And my folks are coming up for a few days! And I get the best birthday present ever - a second bathroom downstairs!! My dad & Schneider ROCK!

Now, I think its about bed time. I did not get enough sleep last night.

Tuesday, July 20, 2004

Good day

Today was a relitively good day. I think I have bounced back faster this time than the first time. I attribute that to having my white counts at 16 before chemo. Granted, I'm still pretty tired and such, but overall I'm feeling pretty good. Looking forward to a full day of work tommorow! Well, as forward as anyone looks to a full day of work - LOL.

Apparently I am leaving piles of hair everywhere. I hadn't noticed, but Kyle, the clean freak, did. Opps! Its still not visiably thinning, but if you touch it you can tell. I think the vacuum is going to get a workout tommorow night. I'd do it tonight, but Kyle is napping on the couch downstairs. So I'll give him a break and let him sleep. (Kyle, are you reading? I would clean but I don't want to wake you! I sware!)

So far I've lost about 8 pounds. I'm perfectly OK with that, especially since I'm not watching my food intake at all. Unfortunatly, my doc won't be so happy. He told me to keep my weight up. I figure I had an extra 30 pounds anyway. I tell ya, the oncologist is the first doctor every to say "you are at a nice healthy weight."

other random thoughts for the day...
- Kyle is an excellent napper
- DEET and plants don't get along. I think I killed one of my periwinkle spraying Off.
- I think I am shedding more than the cats
- I turn 30 in 2 days
- I miss Meegan!
- Someone asked about Locks of Love. I donated 12" of hair to them in June of last year. I was close to donating again when I chopped it all off, but I only had 7" to chop, and they need a minimum of 10". Its a great cause though! I have several friends that have donated too.
- Something messed up my side border. Now all the stuff on the side is way at the bottom. I wonder what happened. Might be the quote in Saturday's post. Thats very annoying.

Monday, July 19, 2004

Monday Lunchtime Update

Apparently, it freaks people out if I don't post daily. Sorry for anyone who was worried yesterday.

I'm doing alright today. I've decided that Sundays is the worst post-treatment day. Yesterday consisted of my laying on the couch or the bed and being cranky. There was a minor not-so-plesant moment mid-afternoon with sweating and feeling like I was about to pass out. Not sure what that was, and it eventually went away. There is a possibility that it was a hot flash - yeah, like a menopause type hot flash due to the way chemo effects hormones and stuff. Or it could have been my hypothalymus pitching a fit b/c it doesn't like chemo either. Or it could have been my body wanting to be sick but the anti-sick meds keeping that from happening. Whatever it was, it sucked, but it passed. And that was probably the worst part of the treatment so far. So thats why I didn't post, I was too cranky to sit up and type on the computer.

My hair is thinning. It started about 24 hours after treatment. Its not noticiable or anything. Just if I run my fingers through my hair a bunch comes out. But its not falling out in chunks or anything. You can't tell by looking. You probably can tell my watching the trail of hair following me around the house.

I'nm working today (but I still get a lunch break!). Telecommuting rocks! I can work without getting extra tired from the commute. However, I could use an afternoon nap right about now. Last treatment I was off on Monday (and napped all afternoon), then only worked half a day Tuesday (again, napped all afternoon). So I'm thinking I might only have half days in me for the first work day or two after treatment. We'll see if I make it through the afternoon.

Thats it for now.

Saturday, July 17, 2004

Blech!

Last time, on Saturday I posted:
 
One word: Blech! Just feel run down and wanting to nap. But I'm bored and cranky and I already napped too much. The anti-puke meds work miricles. Yay for that! But anyway, today I just feel puny and cruddy.

 
Today I just want to say
 

Friday, July 16, 2004

Day 2

So today's Day 2 is better than the first Day 2.  I'm tired, but over all not sore, no heartburn, generally less bad.  So thats a good thing.
 
I got my neurolast shot today to keep my white counts up.  And I talked to the financial lady about the fact my insurance company has managed to deny every single claim they have processed.  She told me "Don't worry a thing about it until you get an actual bill, and STOP CHECKING ONLINE!  Just wait until you get it in the mail." 
 
But its only day 2.
 
Day 3 and 4 were worst last time.
 
On that note, I am off to nap 




Thursday, July 15, 2004

Chemo #2

Its over with. 
 
I got there around 1:15, left a little after 4, just in time for I-395 rush hour.  Joy!  Anyway, so far I am feeling fine.  Yay!  I did a little shopping on my way home.  Needed to run a couple errands, and this weekend I will likely feel like poo.  So I figured I take car of it now.
 
Kyle's fixing me dinner, then we are going grocery shopping.  Oh wait, he says "Whats this WE stuff?!"  So I will correct that to say "I will make a list of stuff I want, and he will go buy it."  *giggle*  He takes such good care of me!
 
I had a new nurse today.  Nurse Bitch was out this week, so they brough another nurse in from one of the other offices in the practice (they have 6 offices around NoVA).  She was really nice.  I wish they would transfer her permanently.  She was a year or two younger than Kyle, so it was nice to have someone about my age.  And how do I know she is a year or so younger than Kyle?  She is from Huntsville, AL and went to Randolf for a few years.  Her father was the French teacher there during the 80s.  So, we got to talking and determined that she was probably at Randolf with Kyle, but a year younger, so they didn't know each other.  How weird is that?!  Small world, eh?

Tuesday, July 13, 2004

1000 Visitors



Wow, I can't believe it. In less than a month, this blog has had over 1000 visiors. I would like for congratulate the 1000th visitor. This visitor was reading my webpage at about 9pm last night and using Adelphia as an ISP. AH HA! You thought you were anonymous when you were browsing didn't you? Little did you know. That's ok, I have no idea *who* uses Adelphia as an ISP. I know some folks who use comcast, but not Adelphia. Maybe someone down in Blacksburg? Anyway, it amazes me that there are that many folks out there keeping up with me. Even though its 1000 visitors, they aren't all unique visitors. I'm sure most of you all visit on a regular basis. But, I'm averaging about 25-30 visits a day. So I'm guessing there are at least 30 folks keeping up with me :)

Speaking of not knowing who people are - who keeps signing their messages hicup?!?! I've figured out just about everyone else, including Donly (as in Mr Donly Honly). But I can't figure out hicup. *grumble* So Hicup... feel free to drop me an email and end my pondering. :)

I had my first Reiki session last night. Reiki is an ancient healing thing. Supposably Reiki "healers" can focus enegery on various body parts, which helps the body heal itself. It really reminds of me a D&D Cleric with the ability to "Lay on Hands." I could really feel the lady's hands get very warm during the session, and they started out ice cold. Other than that, it was just very relaxing.

Had my blood work this morning. My white count is 16.2. Normal minimum is 2. So I am not only good for chemo Thursday, I am WAY good! Joy... I'm annoyed b/c I don't want to do it again. But I gotta do it, so I might as well get it over with, right? Yeah.. uh huh.

Last, but not least for today. I discovered that receiving bleomycin means I'll never be able to scuba dive. Not that I can scuba dive now, but its one of those things I've always wanted to learn.

Bleomycin and scuba diving: to dive or not to dive?
G. Huls, D. ten Bokkel Huinink 50
Netherlands Journal of Medicine
A B S T R A C T
Bleomycin is to treat patients with testicular cancer and lymphoma. Bleomycin can bind to DNA and chelate iron. The resulting complex can form an intermediate capable of interacting with oxygen to produce reactive oxygen species, particularly superoxide. Administrating high-inspired oxygen concentrations (e.g. during anaesthesia or acute illness) has been reported to exacerbate pulmonary injury. The duration of risk after bleomycin chemotherapy is unknown. Here we discuss our advice to a young male patient, who was successfully treated with bleomycin for testicular cancer, concerning the safety to return to scuba diving. Since scuba divers are exposed to high partial oxygen pressures (depending on the depth of the dive) we discouraged this patient from resuming scuba diving.

Sunday, July 11, 2004

One short post

A lot of folks seem shocked, surprised, or amazed that I have been chipper and smiling through this whole thing so far.

First - I fake it well. I've learned over the years that if you fake a good attitude, it will eventually sink in give you a good attitude.

Second - I stumbled on this story today. I think Jerry was able to sum up the attitude I try to take. Granted, I can't do it 100% every day, but its so true. I choose not to let this get me down. Compared to what some folks go through, this Hodgkin's thing is nothing - especially since I'm going to beat it the first time! Anyway, go read the link :)

Fun times yesterday!

Kyle and I decided to get out of the house and away for a bit, so we made a day trip to Charles Town Racetrack to hit the slots and watch the horses. The slots there appear to have a terrible payout. In Atlantic City its easy to at least break even on slots, but Kyle and I lost everything, and quickly. Very, very annoying. It would have at least been tollerable if we got to play for awhile, but no... oh well.

The horse racing was really cool, even though we had not a clue what we were doing. At first we tried to read the program and figure out what everything meant, we figured out some of it, but I ended up putting money on horses cause I liked the jockey's name or the colors. It worked somewhat. I bet on 5 horses, $5 to show on each. I won 2 of them. This would have been decently cool if we could figure out how the payout worked. From reading the scoreboard "payoff" column for a show bet, I should have walked out with $35 ($10 more than the $25 I put in... not too bad). But, for some reason they gave me exactly half - $17.50. Kyle's one win payed exactly half of what we exepcted too. Being so new, and in shocked, it didn't even occur to us to ask at the window. But then later we thought we should have. Oh well. The best I can figure is that the state kept half?

So even though we did pretty poorly financially, it was a fun afternoon and evening. Watching the horses was really cool, we were outside, right next to the track, and it was a very nice evening. Kyle and I were amazed at the people there. The stereotype of horsetracks is that they draw a sketchy shady crowd. But there were families there. Seriously, tons of kids running around. And lots of well dressed folks too. Not the West Virginia rednecks I was expecting (although they were there, but the minority of the crowd).

I was very good and used my antibacterial hand gel after the slots :-) I didn't get tired until the very end when we were walking around and then out to the car. My calf cramped up again *sigh*

Friday, July 09, 2004

I feel normal!

YAY!!!!!

I was about to post that I was so happy with my insurance company b/c I just got the letter saying I would be allowed 8 no-puke pills every 28 days.

Then I logged onto my insurance website.

They have already denied over $4k in claims.

Out of 12 claims in the queue, they have processed 3, and denied all 3.

$18.00 was denied with the following code:743 THE CLAIM IS DENIED BECAUSE HANDLING FEE AND/OR VENIPUNCTURE IS NOT PAYABLE. MEMBER MAY NOT BE BILLED.

$4,360.00 was denied with the following code: 256 SERVICES MUST BE PERFORMED BY A PARTICIPATING PROVIDER. CLAIM IS DENIED. MEMBER MAY BE BILLED.



I'm really pissed, b/c those are the charges from the bone marrow biopsy (I think, based on what I can tell). I had the referal to my oncologist, he is a participanting provider, they fucked up and sent it to the wrong lab.

Thursday, July 08, 2004

Bah humbug!!

I'm annoyed... I should be feeling better by now, but every day its something new. Today, the side effects of the neutrogen shot - achy hips and sterum. Plus, my calves are still all cramped up, and I still have problems sleeping through the night. Arg!!!

Now here is something that about 50% of the folks reading this are going to beat me up for, but I was walking down the hall at work today, with my hip bones aching and my calves cramped up, and I thought to myself "is this what it feels like when you are old?" So I have a new respect for my folks moving a bit slower than they use to. :)

Anyway, its 8:45 and I want to go to bed. Sleep tight everyone!

Wednesday, July 07, 2004

Radiology Oncologist appointment

I had my consultation with the radiology oncologist this morning. She was AWSOME!!! I was promised by a friend that she was cool, and man, this lady was quite awsome. She exaplined a lot, went over the PET scans and discussed a lot of stuff with me. It turned into about a 2 hour appointment talking about all the options, plus she explained a lot of stuff too. Turns out, "nodular sclorosing" gets its name from the scars it leaves behind. Apparently, there aren't that many actually Hodgkin's infected cells, but they make a mess and leave behind these "sclorosing" (or scaring) areas. Interesting :) She also explained to me what the PET scan showed, and staged me at IIA. So thats good. First, b/c now I know, and second, cause II is still in the "really easily treated" bit. In fact, there are really only 4 lymph nodes involved, two on each side of my neck. So thats all good news.

Turns out, the "PET/CT Fusion" scan I had is really good for staging, but doesn't provide the details the radiology oncologist needs for her stuff. Something about it not having enough anatomical detail to aim the radiology stuff. Anyway, what that meant is that I needed to have a real CT scan, and because I had already started chemo, I needed it now while they could still see it. So, at 9:45am they called over to the hospital and got me squeezed in. Then I had to drink two quart sized things of nasty barium liquid. It was the consistency of milk, but tasted HORRIBLE!! I was about gagging on it. Then I had to sit for 2 hours. Then I checked in, but radiology was running late, so I had to wait another 30 minutes or so. Finally they took me in. Then they had to inject some iodine stuff into me, which almost made me ill. Apparently, that is normal. The technician explained to me that you body detects something in the blood it doesn't like, so it naturally assumes it came in through your stomach. If your body figures out that there isn't anything scary in your stomach before you puke, you are lucky. I was lucky.

Anyway, by the time I finished everything, it was 1:30. My office is about 45 minutes away from the hospital. Work 2:15-4:30 or nap? Tough choice.

on that note, my comfy bed calls.

Tuesday, July 06, 2004

Back at work

So I went back to work today. I started feeling a bit more like myself last night. Not 100% or anything, but a bit better. Less cranky at least. We went for about a 20 minute walk last night. Ug! It was too hot at humid even at 9pm, but hey, at least I got out of the house.

Anyway, lingering side effects seem to be: nasty food taste, sore throat, cramping in my calves, and a general feverish feeling. I'm not running a fever, I've checked, but its just that sweaty/cold feeling where you feel lke you can't regulate your body temp. Blech!

Monday, July 05, 2004

Happy 5th of July!!

I missed it yesterday. Opps!

Nothing new to report. Just more general fluy-feeling and fatigue. Too tired to do anything, but too rested to sleep. Blech! Anyway, last night, to get out of the house, we went for ice cream and fireworks. Found a little country club nearby that had a pretty decent show. About 20 minutes long, and as least as good as our hometown fireworks. We thought that was odd, but then, when you think about it, it doesn't surprise me at all that a fancy country club in NoVA would have more money that Oak Ridge, TN. LOL

My throat hurts this morning. Not sure what that is about. Maybe those "mouth sores" I keep hearing about in my throat?

Saturday, July 03, 2004

Saturday

One word: Blech! Just feel run down and wanting to nap. But I'm bored and cranky and I already napped too much. The anti-puke meds work miricles. Yay for that! But anyway, today I just feel puny and cruddy.

Friday, July 02, 2004

Side effects

So far, these are my side effects:

achy knees (bleomycin)
funky taste in my mouth (bleomycin)
can't sleep (streiods)
headache (caffiene withdrawl, or the chemo)
heartburn (probably everything)
very cranky (nicotine withdrawl)

Overall, not too bad at all. Heck, I was out and about twice today, both times to the doctor b/c they wouldn't give me my PET films the first time, so I had to make another trip after I pitched a fit.

Anyway, I have now popped something that will make me sleepy (anti nausea pill, but side effect is no heavy machinery - and I need sleep). So I am going to take a nice nap.

From what I have heard, the majority of the fatigue sets in on day 3. Not sure if today is day 1 or 2, so I'm expecting the fatigure to hit this weekend. But, I've already had my shot to boost the white blood count. YAY!! Also, I got it fixed so I can have 8 anti-nausea pills per month.

Anyway, I'm not really up to leaving the house anymore today. I did it, it was fine, I could do it again if needed, but I think I will prefer to stick to the couch. However, visitors are welcome. :)

Lesson for today

If you don't like what the first nurse tells you, try another nurse.

Yesterday, I was told no diet coke. ever. again. This morning, after my shot, the nurse asked me if I wanted something to drink. I said "Well, I'd like diet coke, but you won't give it to me." She said "Why not?" And I explained the other nurse told me I couldn't have it, then, said other nurse came running over to try to stop my from having my diet coke. I then got a lecture from her about how I will have to drink extra water to counteract the caffeiene, yada yada yada. After all that effort, it tasted like shit b/c of the funky taste in my mouth.

Yesterday, I tried to ask for staging, got nothing. So then I mentioned that I need to get copies of the pathology reports & PET films to take for the radiology oncologist consult. The nurse told me I had to call all the other doctors and go visit all their offices and pick it all up, b/c they didn't have my pathologies and such. I thought that was odd, why would they NOT have my path results?! Then, she told me when I got my path results, it would have the stage on it. I said "Thats odd, cause I've seen the biospy reports, and it didn't have anything." And she insisted it would be there. Funny... that biopsy was done before any staging.

Today, I noticed something from my ENT when the nurse was flipping through my chart. I mentioned to her that I needed copies of the path reports and it would save me a trip if she could just give them to me. So she pulled them out and made copies. Hereto refered to as bitchy nurse, came running over to stop nice nurse, b/c "She doesn't know her stanging, she doesn't know anything, we can't give her that stuff unless the doctor has discussed it with her, yada yada yada." I shot back that this stuff is 3 weeks old and it HAS been discussed with me. Nice nurse went to check with the doc, just in case, but gave the stuff to me.

is with these people?!? Doesn't HIPAA say I'm entitled to anything in my chart whenever I ask?! And why so much secrecy anyway?! I can't believe I started chemo and they haven't given me a stage, and want me to wait until August. Apparently, I'm not supposed to care about the results they keep getting back.

Oh, the one thing I did find out new - my bone marrow biopsy was officially negative. Shh! Don't tell bitchy nurse that "hadn't been discussed with me yet."

Thursday, July 01, 2004

WOO HOO!!!

First one down!

And really, at least the treatment itself wasn't so bad.

No naseua whatsoever. YAY!!

In fact, I would say the funny taste in my mouth is about the only side effect so far.

Of course, the fatugue will apparently set in eventually.

But for now, no problems. And most of all NO PUKING!!!!!

Oh, I should add, no, I don't know the stage yet. I am very annoyed with that. The nurse said the doc would go over that with me when I see him - in AUGUST. I seriously asked about 5 times. My doctor did stick his head in for a minute, so I asked him about it. He didn't have my films in from of him, but he said "It looked like it was all above the diaphram, one suspicious part down here [pointing toward his left side], but I don't think so." So I said "What does that mean? Stage II?" and he said "Yeah, I or II." But, next week I have an appointment with another oncologist, so hopefully she will be able to tell me more. *sigh* She come highly recommended, so that should be good.

Pre-first chemo

I have talked to loads of people who have been through chemo (work folks and online folks), and from what I hear its just like a bad flu. Achy, fevery, and general feeling like poo. But they all say its not that I'll need a full time caretaker or anything. Chemo isn't what it use to be, and the anti-puke meds apparently work wonders. Yeah, I'm probably going to feel like shit. But at this point, I have no idea what side effects I'll get. Yes, I'm nervous. Yes, I'm scared. But right now, everything is unknown. It would be different if I was very sick to begin with, or if I was 80 years old. But I'm 30, and ignoring the obvious, I feel fine, I'm strong, and I have a lovely boyfriend who lives here and is willing to do whatever I need.

I keep telling everyone, when you feel like shit you don't want tons of people around and you don't want to go out and do stuff. I have half of folks trying to convince me to get out of the house, and half telling me they will come over and cater to my every wish. And none of them will take "no" or even "we'll see how I feel after" for an answer. Its really making me want to scream "let ME figure out what I want and stop pressuring me to commit!!" :-) Or that could be the nicotine withdrawl talking. LOL

I know its just everyone's way of showing their support. Please know I do understand that you care. :) And I appriciate it, I really do.

Anyway... I'm scheduled for 1. Should be home by 4. I'll post and update when I get home. Worst case, I'll have Kyle post one.