Wednesday, June 30, 2004

Nothing new

Absolutly nothing new to report.

So, to entertain you, I give you this link which details all the fun side effects of ABVD chemo. Side effects vary by person, and pretty much the only one they can guarentee is loosing my hair. Please keep "no puking" vibes for me tommorow and hope that the anti-puke meds work their wonders.

Well, one tid bit. I was rather excited to pick up my prescriptions for CVS and they only came to 50-odd dollars. I had this horrid fear that my insurance would call them all non-formulary and charge me $35 each. But only one was $35, the rest were under $10. YAY!

Tuesday, June 29, 2004

T-minus 2 days

Had to retake my pft today. Not sure exactly why, just the the doc didn't like the results and wanted it retaken at the hospital. I don't know if that means I failed, or he just didn't trust the results from an office he wasn't familar with. Oh well.

Was supposed to get a call from the nurse today about the PET scan. I didn't. I'm guessing the office didn't get the results in today like they expected, or the doc didn't have a chance to review them yet. So no, I still have no clue what stage I'm at.

Work was work. The rumor mill is starting to work and people are finding out without me having to tell them. I don't like actually having to tell folks. I tried to tell an old friend of mine, but I just sent him the link here. A) he didn't read it at all or B) he read it and had no clue what to say, b/c the email I got back didn't even acknowledge anything. Oh well.

K brought home this big new monitor, but its too tall. It hurts my neck to look at it, so we need to lower it about 2 inches. The table is fully adjustable, but I can't lift the monitor so I can't do it.

Thats about it for today. Nothing new really, but I wanted to make my daily post :)

Monday, June 28, 2004

Warning - Radioactive Ruby

I'm radioactive! Well, at least for a wee bit longer. Don't remember what they said the half life was. Anyway, I had the PET scan this morning (no Dad, I don't have any results yet - they have to send them back to my doctor). The worst part was they wouldn't let me read while the stuff was in me, so I had to lay there for 45 minutes, but I couldn't fall asleep, no matter how much I wanted to. I was just wide awake. Then, when I was actually in the scanning tube, I almost fell asleep. Figures.

Sunday, June 27, 2004

Farenheit 9/11

In an attempt prove I can and do talk about other things and just to generate more comments to my blog, I am now going to discuss the finer points of Michael Moore's new movie Farenheit 9/11.

Just joking ;) But we did go see it today, and I think everyone should see it, even if you won't agree with a single thing in it, just so you can get fired up. :) I love political debates, and anything to get more people to take an interest in politics. Even if you don't agree with this unabashed liberal ACLU supported. :) We saw it at the Hoffman, where it was playing on two THX certified screens. We got the big theater! The 2:30 show was sold out, and some folks never found seats, standing in the doorway the entire 2 hours. One lady brought Kerry bumperstickers and buttons and was handing them out. She didn't bring enough. LOL

After the movie, we went for sushi and my favorite sushi place RUINED my favorite maki roll (ok, so "maki roll" is techically redundent). The last two time I ordered it, it was asparagus and shrimp tempura. This time, it was asparagus, shrimp tempura, and MAYONAISE?!?!?! What idiot ruins a good sushi roll with something as horrid as MAYONAISE?!?!?!

As far as the real reason you are reading this every day... no new developments. The swelling, bruising, and pain from the port have gone almost completely away. Actually, after the percocet wore off yesterday, I was fine with Alleve. And we did make it to the party.

The PET scan is tommorow at 8:30am. Joy! Then I am off to work. Chemo starts Thursday.

Saturday, June 26, 2004

Advil or Tylonol

Yeah right!! I woke up this morning and could hardly move. My back hurt from being on my back all night, and the surgery site hurt like hell. I must learn that just b/c its a "simple, same day procedure" does not mean its painless and you will be back to normal the next day. Anyway, after laying there for about 30 minutes trying to get up the nerve to sit up, I made myself a bagel with cream cheese (yum!!) and went rumbling through the medicine cabinet. Advil, tylonol, excedrin, percocet, asprin... PERCOCET!! So what if its two years old, its gotta be better than asprin! LOL 30 minutes later I had a nice warm fuzzy feeling and coule actually move. YAY!!! I had been told that the port installation was relitively easy, and just a little sore. I think the reason I'm a bit more than a "little sore" is the guy that told me that didn't exactly have an extra 5 pounds hanging off his chest pulling the skin down. I'm, err, hand carrying myself around.

We're supposed to go to a birthday party party tonight. I suppose we will still go, but I only promise to stay as long as the percocet works :)

Friday, June 25, 2004

I have a port

Got my port installed today. That was like real surgery in a real operating room. They told me it would be moderate sedation, and I'd probably just sleep, but I could be awake. Well, they started slicing in to me before I was full sedated or with not enough lidocain or something, b/c I started bitching about it hurting, so they put more stuff in my IV, and then I went to sleep for some really funky dreams. Apparently they did know what they were doing though, b/c I started waking back up right as they were taping the dressing on. I asked if they were about done, and they were. Kind of cool. It was supposed to be about an hour to an hour and a half, mine was closer to an hour and 45 mins, but since I was out, I didn't notice.

I feel like I'm back to where I was 2 weeks ago though. Can't turn my head very far, only its the other side now. LOL But it doesn't hurt nearly as bad. Hurts kind of like a pulled muscle. They didn't even give me good pain meds. When it all heals up, I'll have this little disk sticking up under my skin. It will be easy to see, but only if you are looking under my shirt, which 99.9% of the folks reading this won't be doing.

The weird part, they don't want me to change the dressing for a few days. But yet, some blood has already oozed through the gauze pad. They said its fine, and not to change it until sunday or monday. Whatever. And no showers for a week b/c it can't get wet at all. Blech! Guess someone needs to give the tub a good scrubbing.

We got home about 3, and I napped uptil about 5:30. I think I'll probably nap more though, but I wanted to post an update.

Thursday, June 24, 2004

Alrighty - we have a game plan

Remember the lady I mentioned who handles insurance stuff for the oncologist's office, and how I was glad she was on my side? Well, after going around in circles with the PET place, visiting them in person today, and them telling me they needed to verify my insurance and the earliest I could get in was Wednesday or Thursday of next week, I talked to my nurse and explained what was happening. She got the awsome lady right on it. 10 minutes later the nurse called me back and told me I had an appointment for 8:30am on Monday. YAY!

I'm scheduled to start chemo a week from today. 4 weeks after my first Dr visit, and 1 week after getting the official word. This assumes there are no surprised in the PET. K is taking off work tommorow for the port installation and next Thursday for the chemo. After that, plan A is that I get to drive myself after the first. Plan B is scheduling it for afternoon, and then he could just be dropped off after work and drive my car home.

4th of July is my favorite holiday - so everybody else better have a damn good time for me! Drink some beer, catch some fish or crabs, generally chill by whatever body of water is nearest, and shoot off the bigest fireworks you can find! (i.e. go to PA or TN - not these wussy VA "fireworks")

As to mental state - the whole thing is starting to sink in now. Feels like I have been on autopilot for the past week, getting appointments set up and insurance crap straight. I think it was when I was laying there during the MUGA this morning, looking at all this expensive equiptment running these high tech tests - I realized that they only do these tests when something serious is wrong with ya. I have no fears about conquoring the disease, mostly fears about the treatment. But the whole thing is a bit overwhelming. Well, more than a bit. Eh.. lets just say I'm having a pity party day. But, as G says, I'll sit around and feel sorry for myself for a day or two, then I'll bounce back :) So, no worries!

I personally know three other folks who have had Hodgkin's, and both are doing great! One is someone from my hometown - she was a couple grade under me, but I coached her Jr High Flag Corps. Another is my rockin' boss. And the last is my aunt. :) Everyone is alove and well! Odd thing, the risk is 3 in 100,000 folks. I don't know 100,000 folks!! I guess thats per year, and we didn't all get it in one year. But still, its supposed to be relitively rare, yeah I personally know so many folks. And apparently my step-sister knows someone too. Craziness!

I turn 30 next month - 30 years ago Hodgkin's was pretty much a death sentence*. Its amazing what medicine has done in my lifetime. Which is why I'm so confident of a quick, relitively easy, and wonderful outcome!

On that note... I'm done talking for the evening (yeah right!). The next time I post, I'll have a spiffy cool port inside me!

p.s. this @!#$^@ needs a spell checker. We all know I suck with typeing and spelling!

* addendum - I've have since been reminded that my aunt also had Hodgkin's, and it was close to 20-25 years ago. So, that stat could be wrong. I read it on a web page. But 50 years ago they couldn't treat it.

Muga, muga, bo, buga

That was a weird test. And the IV lady wasn't too good. After two tries she said "if I don't get it this time, I'll go find someone how knows how to do it." Oh these people make me feel so confident sometimes. But anyway, they inject your with radioactive stuff, then you lay on this skinny table with no arm rests (and an IV still in your arm!) and they take pictures of your heart. I could see some of the still pictures, but I couldn't see the screen where it was actually beating. Bummer! Still, it was kind of cool. Except they were concerned that the couldn't make it any bigger on the screen, then some higher up came over and said "oh, she's just got a little heart." LOL I'm a small hearted chick!

I think I made a little progress in getting the PET. The official word Tuesday was my insurance would pay, so to wait for them to call, but if I hadn't heard by Thursday, to call them. Seeing as how I was in the same building this morning, I went down in person, with my doc's PET request, and tried to stand there until they gave me an appointment. I failed. They PROMISED to call me tommorow after they verified my insurance coverage. Dudette! They did all that on Monday. But apparently, that didn't count, she had to do it. *roll eyes*

Oh, and the dentist gave me a clean bill of health. WOO HOO!! Once again, I have great teeth. He always teases me about how I'm a bad patient b/c I don't let him make any money off me, so we joked that he was happy that one of his fellow medical collegues was about to make a ton from my insurance company. LOL

On a more crappy note, the stupid lump thing seems to be going up my neck now, and is tender. I'm not too happy about this. Secretly, there was part of me that was thinking one of these days they would call me up and say "Opps! We looked at the wrong bioposy." This doesn't seem to bode well for that happening.

Wednesday, June 23, 2004

Something I've been meaning to say

I'm such a slacker. I keep forgetting.

I want to thank everyone for the kind words and well wishes, both in comments and in emails. It really means a lot to me. :) I may not reply to everyone personally (again, slacker), but I do read them all and think about you! Its so nice to see that I have so many lines of support, both local, long distance, and the Spa girls I've never met. You all mean the world to me. Its nice to have so many friends and people thinking about you.

So, thats my cheesy post for the day. You probably know I'm not much for cheesy and fussing, but it occured to me I needed to say thanks. :)

Today's lunchtime research

So I've been pretty bummed about the whole chemo thing. Just all the bad things I've heard over the years. All the images in my head of bald folks puking their brains out and such. Just sounds so not fun. So I had been hoping for radiation treatment alone.

I'm begginning to become pursuaded that the doc is right and this is the best way to go, no matter the staging results.

First, chemo side effects are so much more manageable now (so I hear). The new anti-nausea drugs work wonders. They have stuff to boost your white AND red blood cell counts if those go to low. And a good friend of mine is promising me that a certain shampoo may help me loose less hair. Heck - at this point I'll try it :-) I just read a message from a girl about my age on the Hodgkin's listserv that said she is only out of it for about 2 days after treatment, and my boss said his was about 4 days.

But this article is what I think convinced me. A short summary is ABVD doesn't make you infertile (through not a huge concern of mine) and doesn't cause cancer later. But radiation drastically increases your risk of breast or other cancers. Something like a 1% risk of developing a new cancer each year. Yeah, that sounds fun. Every birthday roll a d100 to determine if you get a new cancer this year. I got a lot of years left!!

So fine... I'll do chemo. I'll even go all 6 cycles of it if I have to. *pout* I don't have to like it, but I guess if its better in the long run.

On a different note - I need a plumber, and fast. Like, this weekend. I'm thinking the bathroom on the ground floor is gonna be a nessicity rather than a niceity. Running up and down the stairs is tiring. And I need my wireless internet setup. I think I need a router b/c I was stupid and bought a wireless access port instead of a wireless router. MUST HAVE LAPTOP ON THE COUCH!!!

Tuesday, June 22, 2004

Hair chopping day

So the pulmonary function test was a breeze. In and out in under 30 minutes.

Then I went and got my hair all chopped off. Its really short. Shorter than its been in years (since the infamous night in the dorms where I chopped it, shaved the back, and dyed it red). A says it looks great. K says I'm still sexy, but he's supposed to say that. LOL I realized something while I was sitting in the salon this afternoon - Almost exactly one year ago (6/13/03) I had 12" of hair cut off and donated it to Locks of Love. They make wigs for children with cancer or other types of alopecia. Funny how life works out. Think they'll give me my hair back in wig form?

Nothing else much to add today.

Oh! I did figure out how to put pictures in here. Hope no one is reading on dialup. LOL

My biopsy scar (and my hair before):

My new haircut:

K being such a good boy and helping around the house (truth be told, he always did this more than me anyway LOL, but I did all that beautiful painting)

Also, check out the cool fountain he is building:

Monday, June 21, 2004

Navigating the insurance maze

So "they" say if you are young, healthy, single, no kids, etc then HMO/PPO plans make the most financial sense for you. Until something major happens and you have to call your primary care doctor's office 15 times a day to get the right referal and argue with people over why you can have a PET Scan and a CT Scan, but you can have a combo PET/CT Scan.

On that note, after spending half the morning talking to folks, I've managed to make 2 of the important appointments, and 2 not so important ones.
Tuesday 3:30 pm: baseline pulmonary function test
Tuesday 5pm: Bye bye long hair
Thursday 7am: MUGA test (still don't know what that is)
Thursday 9:45am: Dentist (cause you can't go while on chemo, and "they" say its better to get them cleaned before you start)
Friday 10am: Chemo port "installation" No food after midnight. Only clear liquids before 9am. Apparently coffee and tea are "clear" but diet coke isn't.

Now that I have that done, the doc's office is supposed to call me back to schedule the port installation (I'm hoping for Friday). And I'm still so confused as to how/when/where I'm getting this PET/CT thing.

Oh, the REALLY good news - the nurse said they would work with me to still go to Alaska in Sept!!!!!! I just have to make sure I am accessible to medical care. But she seemed to think that within a 2 hour drive of Anchorage would be good enough. A cruise would have been bad though.

Sunday, June 20, 2004

How I'm doing


So this evening Kyle and I were able to nail down what I can and can't talk about. Ask me any of the technical details - the test coming up, when I'm aiming to start chemo, how long it will last, my hair, the meds, the tests so far, the results, etc - I'm cool. I'll answer those no problem. I can even tell you the funniest parts of the "Chemo and You" book ("don't forget to wipe after you use the toilet" - like people need to be reminded?!?!)

Ask me how I am doing and thats another story. It must be the ENGINEER in the Engineering Psychologist. Technical stuff is fine. I'm just not to keen on talking about the mental aspects. Especially since I feel perfectly fine, and I'm not someone who likes to be fussed over. Please don't fuss over me. :)

But I think I can type it fine. :)

So - How am I doing? I'm fine, really. Its been an emotional weekend, just dealing and processing everything. But, I'm about as good as can be expected from someone who isn't going to let this get her down. I get tired a bit easier than I use to. Like when I'm shopping, I can't walk around at my normal pace or my legs cramp up and I get exhausted. I must admit, this has been coming on for a couple months - and its good to finally know its at least partially to blame on something other then me being fat and lazy! LOL So yeah, things wear me out easier. That is counteracted by bouts of insomnia (hence the midnight posting when I have to work tommorow). But really, other than that I'm fine :) Physcially I was much worse last week b/c of the biopsy stitches and soreness there. Mentally I'm just coping as best I can. So, now that I answered that question - ya don't need to ask :)

I've read enough stats to know that I'm a classic case, with a classic presentation of the most treatable subtype of the most treatable cancer. So, I'm not freaked out about dying or anything. So no body else better be! Thats an order! Listen to me or suffer the Wrath of Hopie!!! Now because of that, my biggest concerns (in order) are a) my hair b) my planned and paid for dream vacation to Alaska c) puking

Also, don't forget K. He has been so awesome. And I think he is taking it all pretty well. Hopefully he won't mind me saying this, but I think he is a little more angry and "why is this happening?!" than me, but he is coping pretty well as best I can tell. But, you can talk to him yourself. Just don't want folks to forget than this isn't such an easy time for him either.

One last bit - then I will try sleep again. I think I calculated out that if I get all my tests and port installed this week, and start chemo the week after (which my doc wants to do) - I could, theorectically, if nothing goes wrong, have my last chemo session the week before we are scheduled to leave for Alaska. So once I figured that there was a remote possibility we could still go, I am bound and determined to keep everything on track and not let any side effects of the chemo delay anything. There has got to be some sort of mental role. And then I just have to convince the doc to let me fly to Alaska a week after finishing chemo. You can tell where my priorities lie. :) I have a sneaking suspicion boss man is going to tell me its a pipe dream, but let me have my pipe dream for at least tonight :)

Saturday, June 19, 2004

Good day!

Today was probably the best day in the past two weeks. WOO HOO!! The first week was freaking, the second was freaking and pain. Now today, I just have a little soreness from the bone marrow test, but other than that I'm great! I went shopping today. Spent too much money. I bought this crazy hawaian shirt. Its loud and obnioxious. The kind that makes you laugh just looking at it. Of course, I bought it for a depressing reason - its gonna be my chemo shirt. But seriously, its the kind of shirt you can't help but laugh at - which was the point.

And then, I went and hung out with some friends. We had a girly night. I got my eyebrows done. G has been harping on me to do something about them for awhile. So I'm girly now. One girl asked it it was painful. I have discovered I have a whole knew defintion of pain. Dude - I had a needle the size of a meat thermometer stuck into my hip bone yesterday... eyebrow tweezing ain't NOTHING!

Well anyway, this was just a short update (although I'm never shortwinded). Just wanted to say that it was a good day :) The type of day where if you didn't know better, you would have no clue that I had that ugly C-word.

Friday, June 18, 2004

My first oncologist appointment


Actually, 90% of it wasn't that bad. My doctor talks just like Dr Kovich from ER. Not quite as hot as Dr Kovich, but for some reason, the accent was a bit reassuring. Stupid as it sounds, but yeah, hearing the same voice I'm use to on ER was reassuring. :-)

It was mostly just talking about where we go from here. First, staging, which they did some today and some next week. They took about 5 vials of blood. And then they talked about chemo and radiation. The doc seems pretty convinced its going to turn up stage I or II because he couldn't feel any other lymph nodes at all. So thats good. Won't know for sure until I get a PET and CT scan (next week), plus a pulmonary function test and cardiac test. Those last two are to make sure my body can handles the chemo drugs. The scans are to locate any other spots. So, the plan, as of now, is 3 cycles of chemo followed by raditation. Apparently, they have found the a short round of chemo followed by radition has the best sucess rate for no reoccurance (as opposed to chemo or raditiona alone). I need to get a radition oncologist consultation to make sure radiation is a good option for me - something about long term side effects and stuff. If they don't want me to have radiation, it will be at least 6 cycles of chemo. Don't ask me what a cycle of chemo is - I'm sure they told me, but it didn't stick. Its probably in the huge stack of papers I have. The selfish news is that, from what I read, you don't really loose your hair until about the 3rd round of chemo, so if I only have 3, I'll probably keep most of it. :)

Now the 10% that sucked big hairy balls was the bone marrow bioposy. I was really hoping they wouldn't do that. But no, they did. And despite my begging and pleading, they wouldn't give me anything other than the local lidocane. And it took him 4 tries to hit a spot where he could get some out. Lidocane doesn't numb the bone. So he punched 4 holes in my hip bone. I was on my stomach, and apparently that was a good thing, b/c I had enough trouble as it was. Poor Kyle stayed and watched the whole thing, including the 6'4" doctor leaning and pushing with all his might to get the needle through my bone. On the 4th try, I screamed out "HOLY BLEEPING BLEEP" (without the bleeps, my parents have this link now - LOL), and the doc was like "Sounds like I found it." Yup, the really painful part meant he finally got the right spot.

The final part was when the insurance lady came and talked to me. She was pretty cool. Just her attitude, the way she talked, and everything made me think "I'm glad she is on MY side b/c I don't want to be on the other side." She's the one that fights with the insurance company when they refuse to pay. She said her job was to make sure they paid what they were supposed to, and I didn't have to. For example, that PET scan thing is about $3000. They have a new combo scan where they do the PET and CT together. My insurance company doesn't like new technology until its proven, so they won't pay for the PET/CT Fusion scan. They'll pay for a PET, and they'll pay for a CT, but not the PET/CT. So, she is going to figure out how to make it so I can get the PET/CT Fusion. Good, cause I don't want to pay $3000!

So anyway, thats a summary of my day. I got home about 2:30 and look a nice nap on the couch. I have a bunch of paperwork to read, probably some online research to do, and all that stuff. But honestly, today, I'm not in the mood. I have all weekend. I'll call the other places Monday and start making appointments.

And now, Kyle has promised me a prime rib from Outback. So I think its dinner time!

Thursday, June 17, 2004


Most of you know Kyle and I are headed to Alaska in September. So, a couple weeks back I asked my friend that works at the Alaska Sea Life Center if he could get me in to pet the seals and otters. He said he doubted it. I'd have to tell them I had cancer or something. Looks like I won't have to lie! I get to pet the otters!!!!!

It's offical

Alrighty then. I ignored this for a couple days thinking it would all just go away. I was wrong. Blech!

The doctor just called me at work. He said he didn't normally like to do it over the phone, but for a couple reasons, which I heard mostly as a Charlie Brown "wa waa wa waa wa waaa", he wanted to go ahead at let me know.

Nodular Sclerosing Hodgkin's Lymphoma


I go it at 9am tommorow to get my stitches out from last week's biopsy. Then at 10:45 I'm off to Fairfax Northern Virginia Hematology/Oncology. No clue what goes on from there. Kyle is taking tommorow off work, because he rocks! So he will be there with me.

So, in my 15 minutes of research, I've learned:

The 4 types of classical Hodgkin's lymphoma are
* Nodular sclerosing
* Mixed cellularity
* Lymphocyte depleted
* Lymphocyte rich
Nodular sclerosing type is the commonest of all types of Hodgkin's lymphoma. About half of all diagnosed cases are this type. Nodular sclerosis is commonest in women in their 20’s and 30’s. It is usually picked up at an early stage from enlarged lymph nodes in the neck

I really like the sound of that "early stage" stuff, especially since hey - I'm in my 20
s/30s (29 and 11 months), female, and it was an enlarged lymph node in my neck. Early stage is good. Early stage could mean no chemo. Early stage could just be radition. Keep your fingers crossed.

So anyway, I really don't know much of anything right now, other that having a name for the big ol' lump in my neck. Hopefully I'll know more tommorow.

So now, this blog will be public, as opposed to the 4 or 5 of you that knew of it before. My goal is to keep it updated so that anyone who cares and wants to know what is going on can check, without me having to answer the same questions over and over again. Please don't take that wrong. :-) The other thing, its is a heck of a lot easier for me to type it all out, see it in print, etc than it is for me to verbally say it to anyone. Right now, if you were to call me, I'd probably break down into a sobbing mess. I'd really prefer not to do that. So anyway, pass it around, leave comments (click on the comment link right below the post). And remember, all in all, if you had to pick one, its one of the better ones.

Tuesday, June 15, 2004

Tonight: Complete denial.

I've decided that its not happening, can't be happening, and its all in my head. It was the valium that made me here the doc say "The good news is it looks like its only lymphoma." Yup... He must have emphasized "nothing" more than I remember. I'm sure of it now.

Never mind that my temp is up over 100, and I've been on antibiotics for over 10 days now. Thats just coincidence. Its still just an infection. Yup. I'm sure of it!


Didn't make it through the night last night. *grumble* Luckily, my boss ROCKS. He told me I could telecommute until I was ready to drive, so I didn't feel too terrible guilty about taking the pain meds at 5:30am. I think rush hour traffic would be much happier if I was not out there while on opiate based pain meds. But overall, I'm much better than I was this weekend.

Monday, June 14, 2004

Happy Monday!

I slept through the night last night without waking up for more pain meds. Woo hoo! Looks like Wendy was right, and the first 48 hours are the worst. Glad to be working from home today, so I don't have to deal with the whole driving thing. But I am more confident I'll be able to drive in tommorow. Yay!

Four more days! Still hoping to hear its nothing, and I am flipping out for no reason. Keep your fingers crossed!

Sunday, June 13, 2004

Day 2 post op

Pretty much a repeat of day 1. I did successfully take a shower today, so I am feeling much cleaner and less smelly. Always a good thing. And, I think I am going to pretend to return to the world of the living in about an hour. I'm headed out to have some girly social time, with Kyle driving. No driving for me on pain meds.

The good news is I telecommute tommorow. I'm pretty sure I can work, but I can't drive yet. Tuesday I have to go into the office. I'm not so sure how this driving thing is going to work. Can't take the pain pills to drive. Currently, I can't turn my head without them. So, I may just risk my life and drive in without ever once checking a blind spot.

Saturday, June 12, 2004

Day 1 post op

Wake up, take pain meds, eat, drink, surf, get wuzzy from pain meds, lay down, watch tv, doze in and out of sleep. Repeat.

Tommorow I hope to be able to shower and get out of the house for a bit of girly social time tommorow afternoon.

Kyle just helped me change the dressing, and I saw the wound for the first time. Its about 2 1/2 to 3 inches long with a total of 10 stiches!

My doctor says its either "nothing or lymphoma, probably Hodgkin's." As I mentioned, he seemed relieved when he took it out and it looked like a lymphoma. I am currently operating under the assuption that on Friday I will be officially diagnosed with Hodkin's Lymphoma. Kyle, however, prefers to go with denial and thinks its going to come back as nothing. I like Kyle's thinking, but I'm trying to be realistic without being overly paranoid. They took a rather large, lumpy, lymph node out of me, and the first biopsy has already come back "inconclusive malignency" but with several suspicios cells. Not enough to diagnos, but enough suspicious cells to be concerned.

So why am I assuming Hodgkin's?
1) From what I have read, if you had to pick a cancer, Hodgkin's is one of the best ones. Its easy to treat, with very high cure rates. So, in a way I am being positive. Its most likely something, and Hodgkin's is much better than the scary sarcomas my doctor first suspected.
2) My symptoms are: an enlarged, painless lymph node and a very low grade fever (99.5-100). As much as I would have appriciated a sudden, unexpected weight loss, I didn't have it. Nor do I have nightsweats. I do itch, but I don't know if its any worse than normal since I have always had dry skin.
3) I had mono in 1993. Esptein-Barr is associated with Hodgkin's. 40-50% of Hodgkin's patients test postive for the Esptein-Barr virus.
4) I'm 29. Hodgkin's is common in two age groups: early adulthood (age 15-40, usually 25-30) and late adulthood (after age 55).

Now I am going to provide some links to information about Hodgkin's because if you are reading this a) you probably know me pretty well and b) you might be a bit worried and want to know more. So, I encourage you to read these links. Short story: its not going to be a cake walk, but it could be so much worse.

Yahoo Health on Hodgkin's.
National Cancer Institute's Hodgkin's Guidebook
Natioanl Institutes of Health's Medline page on Hodgkin's

Friday, June 11, 2004

The Biopsy

The following is my update to my message board girls that I posted about an hour after I got home.

So that was much better than last week. Valium makes all the difference. I was awake and fully concious through the whole surgery, but I didn't feel a thing, nor did I care what was going on. Warning, the valium hasn't quite worn off yet, so this might seem disconnected.

So I talked to the doctor, asked him a lot more questions than last time, and got some answers for him. I snuck a peak at the full pathology report from the first biopsy. "Inconclusive malignecy" some cells indicating cancer, but not enough for a definitive diagnosis. Its definatly not an infection - we know that much for sure by now. Turns out, the reason he wanted to do the biopsy so quickly last week was he was afarid I had something really scary. Can't remember the names, but he listed off 2 or 3 things that ended with sarcoma. He thought I had an asymptomatic sarcoma in the lower half of my body (ovaries, stomach, or bladder) that had matasticized into my upper lymph nodes. From my research last week, I have learned that crossing the diaphram is a bad sign in matasticizing cancer. But, he said now that he had it out and has seen it, he thinks its probably "either nothing or hodgkin's." So, here's hopeing for nothing, but realitically - he pulled a tumor the size of a pingpong ball out of me, and he only got half. Realistically that probably isn't "nothing."

So.. in a way, Hodgkin's isn't too bad. I mean, its 95% curable in stage I, and 80% in stage II and III. And I'm asymptomatic, which makes it better too. And I do feel better knowing the options rather than not knowing anything. But its kind of funny when the doc says he is releaved that its "probably only Hodgkin's." One thing that really made me feel better is when he said that he wanted to be aggressive b/c of the worst case (the metastisized shit), b/c if it was Hodgkin's we could have sat on it for a month or so with no problem. I guess some folks would have tried antibiotics only for a few weeks to see if it was an infection. So, if he had gone that route, and it was Hodgkin's, it wouldn't have been a problem. But if it was something worse, then that time could have been critical.

This biopsy is going to take another week. I will go back next Friday. We aren't sure what time b/c he didn't have any appointments avaiable, so the scheduling girl is going to talk to him to see if she should squeeze me in somewhere on Friday or what.

Oh, the reason he old took half out was b/c it was about twice the size he thought it was, and the whole thing was too big to take out under local in the office. At one point, he said to me that given its size, he probably should have sent me in and done it under general, but a) he wasn't expecting it to be that big and b) he needed the practice. Oh lordy.. things you don't want to hear from your during surgery.

And my scar is about 4 inches long, with about 6 stiches I think (I didn't count, but it was more than I expected). But he said it going to be right in the folds of my neck, so after a year, you won't even be able to see it.

I made him show it to me, but only after he was all done. He offered right after he cut it out, but I asked to see it after he did the sutchering. I didn't want to open my eyes and see the intruments until it was all over. Plus, since during it he kept saying how big it was, I thought I might freak if I saw it and then he had to go back in to sew it up. It was a little smaller than a pingpong ball, and about the consistency of ground beef.

Thursday, June 10, 2004

Not so great news

I just got off the phone with the nurse from the ENT's office. She called around 7:30pm, because I was scheduled to go back at 11am tommorow morning and they wanted to change things. Turns out, they got the biopsy results back and now they want to take out the lymph node. She wanted to see if I could come in at 2pm instead of 11am, and to make sure I had someone available to drive me. Luckily, Kyle already was taking off tommorow, so that is good. At this point, all I really know is I am having surgery tommorow, in the office, under local, but they promised me good drugs. Given I passed out with a needle biopsy, they are going to load me up good on some valium. Unfortunatly, the nurse wouldn't give me much information about the biopsy report, just that it was inconclusive and they wanted to take the lymph node out for a full biopsy.

Friday, June 04, 2004

Lets start at the very beggining

On May 15th, G and L came down to visit for the evening, then we went over to S's house for a party. When G and L left, I walked them to their car. I felt a mosquito on my neck, so I reached up to swat it. But when I did, I noticed this strange lump just above my collar bone. Hmm, thats odd. I had G feel it to make sure it wasn't in my head, and she agreed, yes there was a small lump, but notihng to worry about. It was about an inch to inch an a half long and maybe half and inch wide. Kind of egg shaped. Went back to the party and started making joke about my lump. We all just dismissed it as a fatty tumor (a lipoma, nothing to worry about). A week later (5/21), I was at my laser hair treatment lady, who works for an otolaryngolgist, and I showed her. She said lipoma seemed like a good guess, but to get it checked out. I felt perfectly fine, so I wasn't too worried about it.

A couple weeks later, just after Memorial Day, I decided I wanted to see my Primary Care Physciain for a couple things, needed my birth control renewed, some alregy medicine to deal with mosquitos, follow up from a couple other things, and look at the lump too. There are two doctors in my primary care office, I had seen Dr N once and Dr T multiple times. Dr T never really seemed to listen to me when I saw him - I felt like he thought I was a hypochrondriac, just dismissing my complaints. Since I had liked Dr N the time I saw him, so I made an appointment for the morning of June 4th with Dr N. I think switching to Dr N for that visit was the smartest thing I have ever done.

Dr N said he did not know what the lump was, but he was fairly concerened about it. He said it couldn't be a lipoma because it showed up pretty large virtually overnight. He didn't think it was a lymph node because no other ones were swollen, it was kind of hard and lumpy, and it wasn't tender. So he decided the best course of action was to send me to an ear, nose, and throat doctor to check it out.

Here is where I start to think this is a bigger deal than I first though. Dr N said he was going to have his staff call various ENTs until he found someone that could fit me in that day. He was very adament that I had to get it checked out right away. I still wasn't that concered. It wasn't until after I left the office, referal in hand for a 2:30 appointment that I realized it was kind of odd for a doc to try so hard to get you into a specialist the same day.

So 2:30 rolls around, and I show up at the ENT. The next hour is a strange blur. The doctor didn't keep me very well informed of what was going on. I had a camera up my nose and down my throat. That was an very, very unplesant expirence. Next, I had a fine needle aspiration biopsy of my lymph node. This was the first I heard it was a lymph node. The biopsy was a miserable expirence. I've never had a problem with needles before, heck - I can watch them stick the needle in me for blood. That said, something about a needle going into my neck, even with the numbing cream and local - it sucked. The doc tried to get me talking about other things, but it didn't work. My body went into "Fight or Flight" and decided to "Flight" by passing out. Blech! I came too all light headed, nausous, and covered in cold, clammy sweat. Anyway, the appointment ended with the doc telling me the results will be back in a week, and he has no clue what it could possibly be. I have antibiotics for the next week, just in case it is an infection. I'm a little freaked out because of the urgency the doctors seemed to have today, but I'm keeping my fingers crossed for infection. In the mean time, its off to watch, wait, worry, and research other options. I think I would rather find out my worst case - then the rest is good news.