Things I Hate...

Well, I am potentially halfway done with chemotherapy as of today. I am getting a CT scan on December 23rd, and depending on those results Dr Hodson will decide to do a total of 6 or 8 cycles. If she goes with the 6 cycles, then today was the halfway point, yay (6 treatments in, 6 to go!).

At this point in the treatment, I feel entitled to do some complaining, so I have compiled a list of things I hate. For a cheerier update, I'm going to post a note on Facebook, so if you don't feel like reading my whining, check there.

Things I Hate:
1. Dexamethasone. I hate the way it makes me feel weak and dizzy and I hate the after taste in my mouth and how it makes me gain weight and I hate how it contributes to my...
2. ...inability to sleep. Can't fall asleep, and can't stay asleep. Which doesn't help the...
3. ...fatigue. Emma (aka emaclrkschnfdt) can attest to the fact that I am no stranger to sleep deprivation.... (as Laura put it once, "give up, it's hopeless!"), but this is fatigue on a level that sleep can't really significantly help. Bone deep fatigue that can hit any time, anywhere. Speaking of bones....
4. ...Neulasta shots and the associated bone pain. I know that the Neulasta helps me keep a normal level of white blood cells (I was dangerously neutropenic after the first treatment), but damn, it makes my back hurt for four or five days. And it gives me back spasms.
5. I hate that I can smell the chemo on me for days and days afterwards. It makes me feel sick.
6. Saline flushes. It's just salt water that they use to flush out the port before and after each drug is administered, but it tastes GROSS (after it's injected, I can taste it in my mouth immediatly). Strangely, it doesn't taste salty, it tastes chemically and metallic. Until this week, I just thought it was kind of gross, but today I had a really bad reaction and nearly threw up. How pathetic would it be if the only drug in this whole process that make me puke was the freaking salt water???
7. My port. I have a love/hate relationship with the thing. Three of the chemo drugs I"m on are so toxic that they can't be administered through anything but a port, and the port makes it so the nurses don't have to search for a vein, but today they couldn't get the port accessed right because it had turned itself on its side in my chest. It took them six needles to get it accessed.
8. In this vein (har har), I also hate having the nurses search for veins in my arms. It took them four tries yesterday. Apparently I have hard-to-find veins.
9. I hate ABVD. I hate how it makes my heart race (weirdest feeling ever), and I hate how I can smell it everywhere, and I hate the fevers and the dizziness and the disorientation and the lack of ability to focus and the sleeplessness and the way it affects my taste buds and my appetite and my hair...
10. ...which is not falling out as quickly as I would like. It fell out very very very very quickly while it was still shoulder-length, but as soon as I buzzed it down it's coming out slowly. I'd like for it to be just GONE, already.
11. Finally, I am sick of the line, "If you're going to have a cancer, Hodgkins is the one to have!" i know that most people with cancer have worse experiences than me, and I know that I have a cancer with a roughly 84% cure rate, but that's still not a line I want to hear. "If you're going to get crushed by a car, you might as well get crushed by a BMW." "If you're going to get hit in the head by a large falling object, meteorites are the way to go because they're awesome!" Doesn't work that way, people.


OK, I'm done complaining. I just felt entitled, as I've tried to keep the complaining to a minimum before today.

Happy Thanksgiving!

So I know it's been a long time since I updated... about a month. For some reason I never updated after the last treatment... Oops.

I had a CT scan on Monday, which gave us some good news: All bulky masses in my neck and chest are showing "marked and significant decrease" in size. This means that the chemo is working, hurrah.

I am definitely at the point where the effects of the drugs are taking longer and longer to wear off. I get tired a lot more easily and things perpetually taste off, instead of just in the first three or four days. This could be because the last three weeks I have been fighting a minor pneumonia infection. I am at the tail end of it now, which is good.

I have decided to attempt full time, plus assistantship, for next semester. Full time for BSU grad students is 9 credits, so I registered for two real 3 credit classes (Graduate level Hydrology and Graduate Level GIS) and three 1-credit seminars (regular graduate seminar and two geophysics graduate seminars). The nice thing about the seminars is basically all I have to do is show up. The problem with having that many seminars is I can't count all of them towards my credit total for graduation, and I'm almost certainly not going to be able to make much (or any) progress on my thesis next semester. This means that I am almost definitely going to have to stay a semester longer than anticipated. As far as the assistantship goes, they think that they are going to need a TA for an online 100-level historical geology class. TAing an online course means that I wouldn't have to actually show up for any classes in person; all I'd have to do would be answer emails and do a bunch of online grading, but grading is OK since I can pick when and where I want to do it. Besides, if I didn't have to do all that grading, I'd miss out on all of the really entertaining answers that people write down (Eric would concur, I believe!) :).

Happy Thanksgiving, everyone... eat some tofurkey.

25% of the way done with chemo...!

So, now that I am one treatment into cycle 2, I am officially 25% of the way done with chemo (6 cycles, with 2 treatments each). This makes me very happy. This means I should be done with chemo by early March (if it stays on schedule), which means I'll probably start radiation in early April, and be done by early May. Hurrah!

This of course means that I have to decide what's happening next semester for me. I keep getting conflicting advice. My doctor suggests that I drop down to part time, but a lot of things I've read in message boards online from people with nearly identical diagnoses/courses of treatment suggest that I can probably stay in school full time if I select my courses carefully. The minimum number of credits to be considered full time in grad school here is 9, which is about three classes, and if I was careful, I could probably swing that. ESPECIALLY if the department let me have a lighter assistantship... like TAing one of the upper level courses where I don't have to sit around in three labs a week. That would be nice!! I would really like to not lose the assistantship since that gives me some income and covers all of my tuition costs. AND I wouldn't have to delay graduation.

In less cool news, I apparently have to get that stupid Neulasta shot every two weeks to stimulate white blood cell production. I hate that shot. It hurts and it give me back spasms for five or six days afterwards. I also really hate the stupid steroids I take for several days after the treatments, and I am resentful of the crazy expensive Emend pills I take for three days with every treatment (crazy expensive= more than $100 per pill).

First cycle of chemo done!

So, the two treatments in the first round of chemo are officially done! Only five more cycles (ten treatments) left to go, then a month off, then a month of radiation five days a week, then presumably done, done, done.

This time around was a little rougher than the first time around, but I guess that's to be expected. My white blood cell count was super low, so I had to get a shot to boost white blood cell production. I also have to be super careful about the foods I eat and stuff like that. Erin and Kim came and kept me company at chemo this time around, which was much appreciated!

Also, the hair-cutting and dying and wig buying is now officially chronicled on facebook (have you vorn vigs? ahhahaha that's never gonna get old, Emma [E.]!). Too many Emmas. Henceforth, Emma W is Emma and Emma E is Thingy. I am very grateful for the influx of notecards and well-wishes and trinkets that are coming in from people everywhere. Thanks guys! I was especially happy to get a note card from my fellow Pathfinders 08 and a super cool photo frame from Emma.

Alright, time for me to head to bed. The Ativan is kicking in!

Update!

So last Thursday I had a sort of follow-up appointment with my primary oncologist, just to go over how the first week after chemo went, and what we can do differently this week. I got some OK news and some not so OK news. The OK news is that I am officially Stage II-A-X. The "II" means all cancer is either above or below the diaphragm (above in my case) and it hasn't spread to any other systems, which is a good thing. The "A" means that I have no secondary symptoms, which is also good. The "X", however, means that mine is classified as "bulky," meaning that at least one of the masses is at least 10 cm long. In my case, there are three that are "bulky": the one in my neck that made me go to the doctor in the first place, one in the upper mediastinum and one in the mid-mediastinum. Studies on how the "bulky" designation affect overall survival rates vary; some suggest that it doesn't impact the five year survival rate (which is between 85 and 95% for stage 2 non bulky, a very very good survival rate!), and some suggest it lowers it by 5-10%. Most importantly, it means I will probably have to get another month or two of chemo, and will almost certainly have to get radiation therapy which makes me unhappy :(

In other news, I have a new haircut! It's short, and kind of alarming to me sometimes, but I am told it looks decent. I'm going in on Thursday for Round #1, Treatment #2 of chemo, so we'll see if that affects my hair status at all!

Feeling OK...

The side effects have been very manageable today. I'm not feeling great, or even good, or even OK, really, but I'm not feeling particularly BAD, either. Just kind of "bleh." I'm quite tired, and food tastes/smells/looks really weird or really gross, but I'm keeping it down, with some effort! Water has tasted like chalk all day long. The anti-nausea pills work, but they make me dizzy. The dizziness has been the worst part, but it only really hits when my eyes are closed, strangely enough. Last night I had a really hard time going to sleep because of the dizziness.

Next week will be the first full week of classes I'll have gone to in about three weeks. It will be kind of good, but kind of lame at the same time. Sigh.

First day of chemo

I had the first day of chemo today, and I am on the ABVD regimen, as expected. Each of the four medications has a different set of side effects associated with it, but basically the "A" is the big hair loss one, so the hair-loss is a go. Apparently it can take anywhere from a few days to a few months for it to come out, but average is about two weeks after the first treatment. The plan right now: Dye it sometime next week (Thursday evening, Kim Dave and Erin?) and chop it off next weekend, in a series of progressively more and more interesting haircuts. If I can get the insurance company to pay for it, the wig is a go, but I expect many days I'll be too lazy to use it. Besides, head scarves come in lots of interesting colors, and I have made a promise to Greg that I'll buy a neon green one.

Right now, I am basically feeling just kind of generally punky. I've definitely felt better in my life, but I've also felt much worse, so I guess it's not too bad! I am quite dizzy and light headed, and I don't think I could even begin to focus on homework right now. I am queasy and the thought of food is really really really unappealing, but I think I could keep food down, if I absolutely had to. So, I guess that's good. I also am really tired but also jittery. I experienced this weird feeling of vertigo earlier, where when my eyes were closed and I was on my back in bed, I felt like I was kind of bobbing up and down in place, and my arms and legs and head were not connected to anything, and that my arms and legs were shrinking and my head was expanding. Weirdest feeling in the world! Tomorrow is supposed to be worse, in terms of nausea and whatnot, so I have a bunch of meds on hand, if I need them.

Also, a note for my friends who I will be seeing regularly: I am supposed to encourage each of you to WASH YOUR HANDS all the time, and use anti-bacterial hand sanitizer if I'm going to hang around you, because after treatment (especially 6-8 days after) I will be super, super, super vulnerable to sicknesses and I'd really rather not be hospitalized for something stupid like a cold. So, if I nag you to wash your hands, don't take it personally!

In other news, they haven't yet staged it, but they are almost 100% certain it isn't Stage III or IV, which means I will almost certainly not have to do radiation therapy, hurrah!

I also wanted to say thanks for all of the notes, cards, emails, etc that I've gotten from you all. I've started a collection, and it cheers me up every day. A particularly enthusiastic "thank you" goes out to ALISON, who I am assuming was the one responsible for the card from the WU EPSc department, and ANNE, who gave me something diverting and not too cerebral to read. I liked the long paragraph from Jill and the single line from Ray on the EPSc card... so typical, it made me smile. Aww, I miss the EPSc department. Thanks, guys!

Hope you are all well... to my non-Boise friends, what have you all been up to? Haven't talked to some of you in awhile.

Tests, scans, preliminary appointments: DONE!

Great news! I am all done with my CT scans, PET scans, three biopsies, surgery to put in the port, heart scan, pulmonary function test... everything! From here on out it's just the routine appointments, if everything goes according to plan :-D

So yesterday I had the biggest of my appointments: the surgery to take a small amount of tissue for a third biopsy, and the operation to put in the port-a-cath. I guess the port will be good since yesterday I went through the whole poke-the-arm-three-times-before-we-find-a-vein thing again. I don't know what it is about my arms, I just have bad veins, I guess. Or really deep veins. Or something. Maybe I am a robot. Apparently it is routine to give all female patients of a certain age a pregnancy test at the hospital as well. I was in the pre-op room laying in a bed for like 45 minutes before the operation. Just before leaving the pre-op room, they gave me a really mild sedative... not anywhere near enough to put me to sleep, just enough to calm me down. I was told that the general anasthesia would be administered in the OR, and that they'd talk me through it, so I assume I was awake for the administering of that, but I have no recollection of even making it to the OR. The last thing I remember was being wheeled in my bed from the pre-op room to the OR, and kind of enjoying it. I am disappointed because I wanted to see the OR. So either I fainted on my way there (which seems unlikely) or those drugs they give you are so powerful you get amnesia for the past ten minutes. So, the next thing I remember is waking up in the recovery room. Getting dressed was difficult, because they had cut into my right lymph node, and the port was put into the upper left part of my chest, so moving my left arm is difficult. I was super super super thirsty, too. And whatever they gave me as an anasthesia made my throat hurt. Other than some fairly acute soreness on the left, however, I'm feeling OK. Not great, but OK.

This morning I had a pulmonary function test, which was basically me blowing into a tube. They have you breathe normally, and then you inhale really large amounts of air, then you pant into the tube, then they have you inhale some carbon monoxide. Good news: I have normal lungs.

OK, off for a nap! The pain killers I have are opiates so they make me feel weird. Urgh. Vote in my poll on the right!

Bone marrow!

I had the bone marrow biopsy Friday morning, and it wasn't quite as horrible as expected, thank goodness. The worst part by far was preparing for it. The nurse had a really difficult time finding my veins. She went in through the underside of my forearm, instead of in the crook of the elbow. Going in through the forearm hurts worse than the crook of the elbow! She went in twice before calling someone else to do it. I guess this is why having the port-a-cath will be good.

I got a fairly high dose of morphine to calm me down, and a shot in my hip to numb the skin. Of course, they can't really numb the bone, so not much could be done there! After numbing the skin, they make a small incision in the skin down to the bone, because the needle they use is fairly thick. They then used something that was like a cross between an apple corer and a corkscrew to drill about an inch and a half into my pelvis (it took about 90 seconds of pushing). Let me tell you, feeling something grind through your bone is a very weird sensation, and not at all pleasant. Strangely enough, it sends a really really sharp pain shooting up and down your leg. LUCKILY, they got enough material the first time they went in. Apparently, they often have to drill two or three times to get enough material. They showed the bit of bone marrow to me, and it was a little over an inch long and maybe one or two millimeters thick. Not much material for so much fuss!

The morphine left me feeling really dizzy and out of it. I had to lay down, completely horizontally, for about fifteen minutes, and then sit in a semi-reclined position for another fifteen, before I could stand, and even then I had to move really slowly because the room was spinning. Mom drove me home and I collapsed onto the couch and slept for about five hours. I missed the quiz I was supposed to make up that afternoon, since I'd missed it on Wednesday for the heart scan and CT scan. I feel bad, because I've missed like four consecutive classes for Digital Signals Processing, and I'm missing on Monday, because Monday I'm going in for another biopsy and to have the port-a-cath put in, which is basically a full day at the hospital. Luckily, I don't have to stay over night! It'll just be an outpatient procedure, but I am going to be asleep for it. Unfortunately, my classes on Tuesday are going to be really hard to make up, because it's labs and stuff, so I'm going to make every effort to be in bright and early at 7:30 Tuesday morning for my first class.... and unfortunately, there till 9:30 PM for my last lab. Grar.

After that, I'm NEARLY done with my many appointments. I have a short appointment for a pulmonary functions test, and then chemo starts up Thursday :( I'll be there from 10:30-5, so anyone who is in town Thursday afternoon and isn't working is more than welcome to come sit with me and distract me... they welcome and encourage visitors (KIM, this means YOU).

More tests...

So far this week I have had so many doctors' appointments, it isn't even funny... :(

Wednesday I had a heart scan and a full body CT. I am glad they did them in the same appointment because that allowed me to minimize the needle pokes I got. Apparently I have hard-to-find veins. They just gave me an IV so I didn't have to get poked more than twice while I was there. Heart scans, for the record, are quite boring. I was just laying there and nothing was moving or beeping or whirring or anything. I think the machine was broken or something. However, the 30 minutes of boredom for the heart scan PALE in comparison to the 2 hours of boredom that was the PET scan this morning...

First of all, it was at 7 AM out in freaking MERIDIAN, which meant we left at 6:30 AM. They gave me a bunch of shots, including one shot of radioactive sugar. I then had to sit, alone, in the dark for an hour. Then I was wrapped up really tight in a blanket, with my arms at my sides, like a mummy (or a nutcase in a straightjacket!). Then I was put onto a very narrow table and shoved into a small tube and left there for 55 minutes, and not allowed to move for the entirety of that. I kind of snoozed while I was in there, because what else was there to do? If I twitched much I would have fallen right off the table, four feet down to the tile floor, and with my arms all bound up at my sides, that would have hurt a bit. Next time I get a PET scan, I'm bringing my iPod so I can have something to distract me for the hour of waiting for the dye to spread, though there's nothing I can do about the 55 minutes in the tube.

Tomorrow morning, I go in for the bone marrow biopsy. I am not looking forward to this, because many people say it hurts like hell. On the other hand, a lot of people say it only hurts a bit more than a shot. So I guess we'll see. Apparently some people react badly to the anaesthesia so I have to have mom drive me there and back. Hopefully I'll be back on my feet by 1:30, because I have to take a quiz then! Digital Signal Processing, bleh.

Monday I go in for the biopsy on the right swelling and having the portacath put in. I actually get to be asleep for this one so it'll be an all day procedure (I check in at 10 AM, and will be discharged around 4 or 5). Fun, fun. Presumably I'll be on my feet again in time for my 7:40 AM class the next day. Bah.

In other news, I saw the cinecast of the final Rent performance on Broadway, and it was fantastic, except I was continuously distracted by the actor who plays Roger because he had really freaky pale blue eyes, with creepy eyeliner, and then in the last scene when he's singing his not-so-great song, he's wearing a horrible purple shirt. I think that scene just isn't meant to be put onto film, because it was creepy in the movie, and it was stupid in the cinecast. Other than THAT, though, I thoroughly enjoyed myself.

Oncologist's visit #1

Today I had my first visit with Dr Stephenie Hodson, who works out at the Cancer Care Center at St. Al's. I didn't learn much that I didn't already know, except now I have a better idea of what to expect. This week, or early next, I have to get a bunch of tests done. I'm getting a full CT scan so they can see lower than my neck, a PET scan to measure cell metabolic activity, an excisional biopsy of the larger tumor on the right, having a port-a-cath put in, and getting a bone marrow biopsy. The excisional biopsy and the port-a-cath thing are going to kind of suck, because they're the type of things where you're asleep for the procedure and they do a lot of cutting. I am also getting a heart test and a lung test to evaluate the strength of my heart and lungs. Apparently there is a small chance of having heart failure due to chemo, and it can be really hard on the lungs. I am not really sure what they do for those tests. I am also REALLY not looking forward to the bone marrow thing, which is going to be Friday morning. The results of this test are going to determine what kind of treatment I'll be getting... it'd be REALLY not good if they found something wrong with the bone marrow.

It's looking more and more like I'll be able to mostly manage my schedule this semester. She wants to start me up on chemo as soon as next week, probably Thursdays. Apparently, each chemo treatment takes 4-5 hours, and then you're basically completely out of commission for the next 36 hours, possibly more. I was glad to hear that they usually do a very nice job of controlling nausea. I have this nifty book that lists how to eat when you have cancer, and I'm not too worried, but it's looking like I might have to add fish back into my diet (Sorry, Emma!). The chemo might start up as soon as next week, depending on what they find with the additional tests. It'll probably be two times a month, which isn't too bad. If I go in after class Thursday morning, I can have Thursday evening and Friday to recuperate, though I'll have to figure out how I'm going to miss my one class on Friday. However, Mondays through Wednesdays are much busier than Thursdays and Fridays, so I think this is the best option. I am really hoping to avoid radiation therapy because that increases your chance of getting leukemia and breast cancer later in life.

More information to come, as I get it!

Diploma to lymphoma...

... Thanks to Brian for the tacky-yet-kind-of-hilarious title.

So, I decided to make this blog, even though I've never pictured myself as a blogger, because the majority of my friends don't live anywhere near me, and as much as I like you all, I can't talk to each and every one of you personally every week. I also realize that some of my friends might want to keep tabs on my progress (or at least, I like to think so!)... ergo, a blog!

Basically, here's what's been happening in the last few months for me:

Finally graduated from Wash U, which is sad, because I'll miss my WUStL friends and I'll miss the EPSc department... BUT, I do have an "in" on the EPSc department in the form of Alison!

I started grad school here at BSU in the geosciences department, and I like it a lot so far. The choice of grad school basically came down to Boise State, Rice University, and St Louis U. Rice was by far the best choice, academically, but it didn't really feel right for me. So, I decided to come home. Being a TA is more entertaining and more irritating than I thought it would be and the classes thus far are pretty difficult. I like the people I share my office with, I like my fellow first-year-grad-students a lot, and so far I like the faculty and my advisor (though he can be tricky to track down, sometimes).

Here is the more significant news, which the majority of you know already: In June I found a weird lump on the right side of my neck, just above my collar bone. I ignored it because lymph nodes swell up and stuff on their own all the time, so I figured it would go away. However, it seemed to get larger, and firmer, so finally I reluctantly dragged myself into the Student Health and Wellness center here on campus. After having a registered nurse, a physician's assistant, and an MD prod at me, I was referred away to a surgeon, who prodded at me some more and then made me get a CT scan. The CT scan only covered my upper chest and neck, but it revealed that not only was the lymph node at the base of the right side of my neck really swollen, but one on the left side, a bunch in the base of the neck, and a bunch in my upper chest were swollen as well.

From here, the next step was a needle biopsy. This was done Wednesday Sep 17th. I got to the hospital way early for that, had some confusion at check in, and then was sent up to the ultrasound department. They took an ultrasound of the area, so they'd know where to stick the needles. Ultrasound gel feels like someone took Jell-O that hasn't quite set, and heated it up and rubbed it around on you. I got a local anasthetic which basically did nothing, and then it took them four needles to get enough tissue for a sample. The sample-collecting-needles make this really weird snapping noise, and it's kind of startling. I got this big old nifty ice pack to strap to my neck, which was kind of amusing. The pathologist told me that it'd take 24-48 hours, and if I hadn't heard anything from Dr. Henson by Friday morning, give him a call. I waited till Thursday afternoon, got impatient, called, got an answering machine, suffered through Thursday evening and Friday morning, got really impatient, called two more times, called another time, called a FOURTH time, finally got a person who said that it would actually be 3-5 days, and then I was just depressed because it seriously SUCKS waiting that long for results from a biopsy. And then, surprise, Dr. Henson calls with the results: Hodgkin's lymphoma, just as he suspected.

So, that is basically all the information I have right now. I am being referred away, again, to a lymphoma specialist who will probably order a bunch of tests to stage it. I expect it'll come out being stage 2A, but obviously, I'm no oncologist. Right now, mostly I'm just fretting about the possibility that they might want to take a bone marrow sample which is extraordinarily painful, apparently. Hopefully I'll get the first meeting with the new oncologist this week, and hopefully soon I'll be able to get more information to all of you! For what it's worth, I am feeling fairly healthy and optimistic about my prognosis.