Tuesday, December 6, 2011

Longest Chemo Appointment Ever

   Today I started Taxol and Herceptin. My appointment was at 9:15, but I had to take Kyle to work of course, so I was already up and just left early to run some errands. I definitely need to avoid the Family Dollar near the hospital because the same guy is always there when I go, and he's super creepy and I'm pretty sure he's on drugs.
   I got to the hospital at exactly 9:15, and they hooked up my port and put me in a room right away. They're switching everything over to some new system, so I heard Dr. C in the other room yelling about things not getting authorized in time. I was worried he was talking about me, because he said they would have to delay the start of Taxol until next week, but thankfully he wasn't or they got it straightened out.
   He said the Taxol's usually easier on the blood counts than the previous chemos, but knowing me, that might not be true. And the major side effect to look out for is neuropathy in my fingertips. I can't remember what he said they do to prevent it from becoming permanent. Stop or shorten treatments I guess? I kind of need my fingers, especially if I'm working with computers all the time...
   With the Herceptin, the side effect they're most concerned about is weakening heart muscles. My first MUGA test had a score of 65, and the one I had last week was 55, so the Adriamycin did weaken my heart a little, but Dr. C said the numbers can be somewhat off. I have to get a MUGA scan every three months while I'm taking the Herceptin to make sure it's not doing any damage, and they'd have to postpone some treatments if the score goes below 50. But since Herceptin's not actually chemo, I shouldn't have any other major side effects.
   My blood counts were good (I didn't get the specifics), so I was sent back to wait for treatment. I got a bed this time "in case of an allergic reaction." That was reassuring. The nurse got me started on an anti-nausea med and a steroid, which took about 30 minutes, which I spent reading a book on my (now hacked and even more awesome) Nook ebook reader. But then she came to give me Benadryl through my IV, and from previous experience I knew I was gonna pass out after that. About 10 minutes later, the words on my ebook reader starting jumping around, so I gave up and tried to go to sleep. Unfortunately, the steroids were fighting with the Benadryl, so I was super dizzy and tired, but I couldn't actually sleep. She started the Taxol a little while later, and I got up to pee (for like the 5th time, sooo many fluids), and by the time I got back to the bed, I was past the typical amount when people usually have the bad reactions. So that was good. The nurse told me to let her know if I felt like I was having breathing problems or stabbing pains in my back. I just dozed off again.
   The Taxol took at least an hour, but I don't really remember. The Herceptin was over the course of 90 minutes. They like to do both of them slow the first time "just in case." Next time, I'll just be given a pill for the Benadryl (still gonna knock me out), and they'll do the Taxol and Herceptin faster. I did get a decent nap in somewhere in there, and was woken up by the nurse telling me I was done. She asked if I needed to call someone for a ride. Ha. Yea, my husband still can't drive so that wasn't happening. But I felt perfectly fine after that nap (just had to pee AGAIN). It was 3:50 when I finally left the hospital. Six-and-a half-hour appointment. The next 11 appointments should be shorter..
   The side effects from the previous chemo didn't really kick in until a day or two afterward, so I'll see what I feel like tomorrow. No more Neulasta shots though! We hope. And my fuzzy hair might hang around through Taxol, but we'll have to wait and see.
   Today was also the last day of classes for the Fall semester. Two of my classes didn't have finals and I took their last two tests Thursday and Saturday, and even recorded a narrated powerpoint for a project I had to "present". I got As in both Networking and Databases. My final for Programming Concepts is the 14th, as long as I pass I don't really care about the grade. Those As will balance it out anyway. It's so nice having all this free time after a brutal semester of schoolwork and chemo.

Tuesday, November 22, 2011

Finally, an Update!

** Sorry about not updating the blog! The past month's been kind of crazy. I made this post into sections for an easier read, because it is VERY long. If you can actually make it to the end, props to you!

SC Visit
   That weekend after the second Cytoxan treatment, Kyle and I went down to SC for nine days to visit family and friends, and pick up the rest of my crap (how do I have so much stuff in another state??). We drove down to Charleston Saturday for my early birthday party, which was a lot of fun and thanks to everyone who made it. It was so nice to see all my friends again.
   I checked out Monday morning, and ran some errands in Charleston. I went to the local bank to get a new card with my current name on it, and while I was making transfers, the teller checked my ID, and said either I got my hair cut really short, or I've managed to hide it all under my hat. Lucky for her, she seemed nice, so instead of slapping her, I laughed and told her "I wish". And then she went on to tell me that she "sees a lot of stuff at the bank, and if anything happened" to me, my husband might not have immediate access to my money, or the state could even end up getting it, since he's not listed on my account. Wow. While that's good information to know and I do appreciate her letting me know, I don't know how I feel about a bank teller assuming I'm gonna drop dead tomorrow, leaving my husband without any money. Regardless, we promptly added Kyle's name to my account.
   I went back to Myrtle Beach for the week and left Kyle with his friend in Charleston. You know, the one who's the reason we postponed having a real wedding because he's deploying for a year in December. It was a much-needed break for the two of us though, since we're together basically all the time.
   I also got to hang out with my beautiful (original) puppy, even though my friend prefers the term "sewer rat" to describe his unique appearance. I took him to get his shots and got him groomed/trimmed, which I knew Ron would not like. It's just hair, it grows back (unless you're on chemo)! Check out his new look:
Man, I miss that little guy... My mother's house, on the other hand, has more animals than should be legal. It's like a zoo over there now that my sister (and her dog and her cat and her turtle) moved in.
   I also visited my temporarily-disabled friend who was home for a while due to an embarrassing story that I'll wait til the holidays to share. And I finally met my other friend's cousin's five-month-old twin babies who I've been stalking on Facebook. She uploads tons of pictures, but even the cutest ones don't come close to how cute they are in person! Unfortunately, she knew beforehand my plot to steal one of them (she has TWO), so she kept a careful eye on me. But I got to hold them and feed the boy. (Don't mind that I look like death in the picture below, the babies didn't seem to care).
It's amazing to see something so perfect in such a tiny package, and now I want one. I don't know how I'm going to get one yet, but I have time to figure it out. Until then, my "babies" are two stinky 90-pound balls of jet black hair.

Dogs
   We went back home the next Saturday. Kyle's friend had been dog-sitting our dogs, and I was worried about the state of our house. We came home to this:
Zeus also took the liberty to destroy every possible piece of cardboard in the living room. And he ate some decorative/organizational baskets I bought at the thrift store (I'm bummed). And he developed an annoying habit of sneaking up on the couch, when he knows he's not allowed on the furniture (I also found him standing on our bed the other day, rubbing his slobbery face all over Kyle's pillow, gross):
But besides that, the house was surprisingly clean! It had even been vacuumed and all the poop was picked up! 

Cytoxan #3
   I didn't have much time to enjoy the clean house because I was leaving for Portland that Tuesday. I went Monday, Nov. 7th to get the third round of Cytoxan. My counts were decent (I don't remember the specifics), so they hooked me up. I managed to stay awake during the second Cytoxan, but that third one knocked me out for some reason. On the way home, I was fighting to stay awake and alert and ended up getting stuck in some strange funeral procession on the main two-lane road going back to my house. Except none of the following cars had any identifying markings. So when five cars ran a red light to get into my lane and then proceeded to drive about 30 mph in a 50, I was not pleased. Especially since I was so drugged up from the chemo and just wanted to sleep. 

Portland/GHC Trip
   I got my Neulasta shot Tuesday, ran a bunch of errands, and Kyle drove me to the airport. I was very surprised with the Newark airport, which seems massive, and yet I was only in the security line for less than 10 minutes. I didn't even see any naked-imaging radiation scanners or any violating patdowns by the TSA agents. And when I asked the agent if I needed to take off my hat, she just gave me a look of pity, and let me go through the xray. Sweet! And then I sat for 6 hours on a direct flight to Portland, watching more episodes of Friends than I care to admit. 
   Portland was pretty cool. They have a great public transportation system! Or at least I thought so considering the places I've lived. The MAX rail took me right to my hotel from the airport, and the convention center for the conference was across the street. I roomed with another CS major from my school who I've known since freshman year and who encouraged me to apply for the scholarship in the first place (thanks Brittany!). 
   I didn't go to as many of the sessions as I should have, and I forgot to bring copies of my resume for the career fair/booths they had set up, but I definitely enjoyed the food and the free swag and the experience of Portland itself. Now's just not a good time for me to be focusing on a future career or grad school. When I said I wasn't sure about grad school yet in a discussion group, some woman basically yelled at me saying I needed to make up my mind right away and go take the GRE. I just told her now's a bad time for me, and she turned to harass the other girls instead. I'm pretty sure grad school, or even a job, can wait. We're getting by just fine on Kyle's income and my refunded scholarship money for now. 
   The conference was kind of depressing in some senses, because I can't just pick up and move anywhere to start a career since I'm married now, and it made me realize how much I've had to put my life "on hold" because of cancer at my age. I was too tired and nauseous to hit up most of the sessions, but we made sure we visited downtown Portland Friday. The MAX rail is free all over the downtown area, so we hopped on. First stop was Chinatown, found some homeless camps set up in the area (wished we'd brought some of the free food from the conference!), found a mall a few blocks over (in the middle of downtown??), realized there was no sales tax on anything, got some fancy hot chocolate, had to buy some gloves (colder than I expected), literally got lost inside Powell's City of Books (it covers a full city block!), and then got soaked in the rain waiting for the MAX rail going back because it's Portland and that's what it does. Overall, we had a fun day, and ended it with the big, final celebration of the conference before hopping on an overnight flight back home. 
   The trip home was much less forgiving. At the PDX airport, I asked about my hat, and the agent asked if I was able to take it off? No, I've glued it to my head! I took it off, and then tried to joke with the other agent that I obviously wasn't hiding anything under there. They also had the radiation machines, so I'm convinced that a naked image of my bald self is now floating around the internet. Then when I was coming out of the bathroom stall before waiting at the gate for my flight, I ran into one of my professors who had also attended the conference and who also happened to be leaving Friday night. What were the chances of that... 

Continental Airlines Sucks
   I was exhausted by the time I landed at Newark, and had a codeshare part of my Continental trip through Amtrak because it was cheaper than stopping in Newark (how??) and would take me closer to home. I went to check in at the Amtrak kiosk. No information found? Amtrak agents weren't going to arrive until 9, and it was 6 in the morning and I was trying to catch an 8:27 train. So I called Amtrak, the guy said no big deal, call Continental, they can instantly send over the right info. So I called Continental, and oh geez. I ended up talking to THREE different agents and still had no luck. The first one insisted there was no 8:27 train to Philadelphia. I checked the times on the board, it said 8:28. I kept having to repeat to her that I was at the Newark Airport station, not Newark's Amtrak station. She said there was no 8:27 OR 8:28. Yet another guy had just come in, called Amtrak, had his reservation of 8:27 switched to an earlier train, which I wanted to do too. I told her to send me over to someone else, but still no luck. I didn't understand how Continental could be that stupid at booking flights and train tickets. Then FOUR other guys showed up, and they ALL had the same problem. We were both on the phone with Continental, yet they couldn't find any of the appropriate information. None of us were happy. 
   The agent finally told me I'd just have to buy a ticket myself out of pocket and call Continental later to get reimbursed for it. I was pissed. I'd ALREADY paid for my ticket, it was part of my flight! They even told me I couldn't get my money back for the whole trip because it was connected with this (nonexistent?) train trip. I stayed on the phone arguing with these idiots for a little while more, and the other guys let me know that the Amtrak tickets they were forced to buy cost $70 each. Wow. Instead I hopped on a NJTransit train to Trenton because it was only $17, and I only needed to go to Trenton anyway. The whole situation did not make me happy, especially being sleep-derived at 7 in the morning yelling at dumb people who can't even run a computer system. 

SC DMV Really Sucks
   I did make it home though. Except I had to pick up the Nissan from Kyle's work first. Tuesday morning when I was in Portland, I got a phone call from a NJ number around 3 AM. I answered it and it's some Sergeant. So of course my first thought is something terrible happened to Kyle, but then I was trying to figure out why Kyle was out at this hour, and then I finally remembered the three hour time difference and that Kyle was on his way to work. Well he got pulled over for "speeding", but when the cop ran his license, its status came back as suspended. Um, what? The cop ignored me and kept talking, saying I needed to come pick up my car and that Kyle needs to go down to this building and file these papers and blah blah blah. I was like "um, I'm in PORTLAND right now," which I had to repeat a few times! Kyle had even told him before he called me that I was in Oregon. But the cop just kept telling me I needed to come get my car. I tried to explain to him that his license was suspended TWO YEARS AGO, but that he paid the fine and retook all the tests, but this guy was obviously an asshole and wasn't going to cut him any slack. Kyle showed me where he was "caught" going 38 in a 25, and the distance makes it impossible. I know the Nissan's got a V6 engine and it's so easy to accidentally start speeding in it, but there's no way it could get up that fast in such a small space, and the cop wasn't even close enough to see the area properly. He also didn't seem to realize that Kyle's building is right around the corner, so to me it sounds like he'd gotten some other car and went after Kyle instead. Go figure. 
   Kyle called the SC DMV later and it turns out it's another case of dumb people not knowing how to run a computer system. Their records show that he came into the DMV three or four times after his suspension, but that's it. He paid the reinstatement fee in cash, so no receipts, and he retook both the written test and the road test, but they have no proof. Even if he had receipts, who would have saved them for TWO years?? So he's screwed as usual. This will probably take months to get fixed, and he has to do some paperwork to get a NJ license and surrender his SC license, and then he has to do more paperwork stuff because it happened on the base. For now, I get to play chauffeur and drive Kyle back and forth to work every day, 7 AM and 7 PM. We're going to the DMV tomorrow to hopefully get the process started. 
   Funny things about this whole situation: We also got pulled over on the way to SC in some dinky little town where the speed limit had suddenly dropped to 25 and we didn't notice, but the cop was super nice and didn't bother with a ticket AND I told Kyle to go get his license renewed while we were in SC since it expires next month, but he forgot. If either of those situations had been different, we could've gotten this problem fixed way more easily. But no, the universe likes to screw us over. How to make this all a little better? Try to convince my mom to go have a "poop accident" in the DMV lobby. 

Classes Update
   On to more a more positive note: I have successfully wrangled some more professors into offering me remote versions of their courses for next semester. I don't know why it took me this long to figure out, but instead of paying 400$ to take the final history class I need from the local college, I can just take 9 credit hours at CofC and get back another whopping scholarship reimbursement. I'm eligible for my full-time disability status for a few more semesters, so I might as well take advantage of the situation. I'm taking history and two 100-level Computer Science electives, which should make for a much easier courseload than the torture I put myself through this semester. Plus, with the amount of money I'll be getting back into my pocket, anyone would be able to see the justification. 
   Only a week left of this semester!

Cytoxan #4
   The Cytoxan alone has not been nearly as bad as the Adriamycin, which is one of the reasons I'm feeling up to taking another semester of classes. I got the final round of it yesterday morning (Monday), and get hopefully my last Neulasta shot tomorrow. I also have an appointment with the genetics counselor, who called me while I out shopping at the mall in SC to let me know my genetic test results. Thankfully they were good! I tested negative for the rest of the p53 stuff, so still no genetic mutations have been found. I'm meeting with her today to just wrap things up. She has no suggestions for any further testing, but wants to make sure my family members will be getting the proper screenings just in case. 
   I also have to get another heart MUGA test (I think) before I start the final part of chemo: 12 weeks of Taxol and the Herceptin (not chemo). Apparently the Herceptin can weaken the heart muscle (like the Adriamycin), so my heart has to be checked again beforehand. My blood counts were decent again today, my hemoglobin was up to 10ish and my platelets were 101. I'll start getting hit with the nausea and muscle aches Wednesday and Thursday, just in time for Thanksgiving! 

Tricare Sucks (but only sometimes)
   I got a new anti-nausea medicine before we left for SC. Hopefully it should help for the Thanksgiving feast. It took days for the prescription itself to go through because of, again, dumb people not knowing how to run a computer system. They said my name wasn't in their system, when CVS is nationwide and I used to go all the time in Charleston, where I updated my name and insurance info right after I got married. When we went to pick the prescription up, they tried to say I had two insurances, and that it couldn't be processed. My stepdad called the day after I got married to let his insurance company know to drop me, and I have never even mentioned my old insurance to Tricare. And I've picked up prescriptions up here before without a problem, so I didn't understand why it suddenly had problems. 
   So I called Tricare, but they had no record of a second insurance company, and told me to call a different number for the pharmacy program. I called the pharmacy program, and they just had to run something through saying I only have Tricare. These calls somehow took about an hour altogether and I just wanted to throw up all over CVS's floor the whole time. Apparently CVS had been double billing BOTH insurance companies (for the past seven months??). I've never had any problems anywhere else thankfully, and shouldn't have any future problems now. I'm so thankful Kyle's health insurance covers everything, but wow it can be a pain in the butt to navigate sometimes. 

Hospital's Parking Lot Sucks (most of the time)
   Before my last trip to the hospital, they added gates to their parking lot. It's always overcrowded and if you don't come before 9 AM, you probably won't get a spot. So to fix this, you need a token from the front desk to get through the exit gate. The last time I was there, I asked if this was supposed to help with the parking situation, and they said the staff sometimes park there when they're not supposed to, so this should stop them. That's pretty inconsiderate of the staff to take the closer parking spots meant for sick patients. 
   I really don't enjoy the fact that this hospital makes me interact with the front desk people not just once, but twice now, once when I enter, and once when I leave. You have to tell them why you're there and pick up a slip of paper with "Visitor's Pass" on it. I usually want to hit the receptionist when I tell her "Oncology" and she asks if I know where to go. I'm BALD. Who do you think made me bald?? The very fact that I'm bald should be a dead giveaway that I'm going to the cancer ward. Then again, since it's colder now, I don't look nearly as silly wearing a fleece hat as I did in the summer. But still, it's just annoying having to deal with these people sometimes and I'm going to be doing it a lot more on the Taxol.
   So anyway, now when you leave, you have to return your Visitor's Pass, which at this point has been shoved in a bag and crumpled up, and ask for a token. So today, I got my token and went to leave. Another building shares the parking lot, and I noticed a white car parked out front in their dropoff section with an old lady in it. The exit gate is right next to it, and is stupidly wide enough for two cars. I put my token in the machine and the gate goes up, and I drive forward, and out of nowhere the white car WHIZZES past me through the open gate, not even stopping for the stop sign outside of it! I'm in disbelief and still moving forward, until I realize OH CRAP the gate's coming down because it sensed a car went through. Luckily I backed up in time, but I was pissed. I had to park in a fire lane, walk back across the street to the hospital, and get another stupid token. I explained it to the receptionists at the desk, who I was sure would recognize I was just in there, and they passed over another token right away, but you could tell they were in disbelief too. Next time I go in, I think I'm going to suggest they add a barrier to the exit gate to prevent two cars from fitting, because that was crazy. 

I Have Hair Again! (sort of...)
   I finally got my reimbursement check for my wig though. They didn't include the tax, but I'm too tired at this point to fight for $18. I don't even wear the stupid thing. But, I might not even need hats pretty soon! My hair started growing back in about two weeks ago, with this crazy platinum blond and brown color combination and peach fuzz texture. It's getting darker and closer to normal now. Dr. C said that sometimes happens, but that the Taxol may or may not wipe it out again. So we'll just have to wait and see. But it's kind of exciting not being that creepy "chemo bald" anymore. It's a shame about the armpits though. Had to break down and shave them last night. I still can't feel the right one, which sucks. But I will gladly shave my armpits everyday if it means having some decent hair on my head!
   When we visited in SC, my eyebrows were still mostly gone (accidentally rubbed off the penciled-in ones the night of my party, oops). I pointed out the patches to my mom, who got sad and said I had had beautiful eyebrows ("you mean 'eyeBROW'"), and related them to "Brooke Shields eyebrows". Ouch... I definitely don't take that as a compliment! But I will also gladly pluck those pesky hairs in the middle if it means having any eyebrows (and eyelashes) at all!

But No Sleep!
   This post was made possible by the fact that I have been completely wired for the past five days. I literally haven't gotten a proper's night sleep in about a week, and before this I was sleeping at least 10-12 hours every night. I think I was up for over 36 hours straight the other day with only a 2 hour nap. Most nights I've only gotten 3 or 4 straight hours of sleep since I have to get up to take the husband to work. I've gotten so much homework done though, which is definitely needed since it's almost the end of the semester. But I haven't really felt "tired". I should've mentioned this to my doctor, but I figure this week's chemo will have me back on my old schedule in no time. But man have I been productive! The "chemo brain" seems to be easing up and I'm so thankful to be able to think clearly again!

Guess what??
   This incredibly long post is finally over and you can go back to much more important things in your life now! Thanks for hanging in there!

Tuesday, October 25, 2011

Starting the Cytoxan (Again)

   Finally got some chemo yesterday, the second round of Cytoxan, but the first time with just it alone. I got there at 8:00 (Dr. C caught me in the elevator on his way up from the cafeteria), and didn't leave until 12:45. They even checked my blood counts before the other patients because they were worried I'd need a transfusion (and be there even longer...). My counts were decent though, my hemoglobin went up to 9, but my platelets were only 78. My blood pressure's still low (86/50), which means I get it taken twice by two different nurses every time.
   Getting the chemo itself was uneventful. I even managed to get some homework done. I started getting a slight headache near the end, which they had mentioned could happen if they infuse it too fast, but it went away pretty quickly. As soon as I left the hospital (and was mopping up the blood oozing out of their tiny bandaids, remind me to bring my own next time), I started feeling really nauseous and tired. I made it home and took a nap. Hopefully yesterday was the worst of it? I couldn't sleep at all last night either, and the FIVE times I got up to pee, I was really dizzy, which I'll let the nurses know today when I go for my shot. But I'm feeling better today, I just hope it doesn't get worse later in the week like with the Adriamycin.
   If there's anything else I'm supposed to update about, I definitely can't remember right now, thanks chemobrain!

Monday, October 17, 2011

Just Kidding?

   No chemo today (again). I was supposed to start Cytoxan today, which I have three more treatments left (and then the Taxol). But my hemoglobin was only 7 something and my platelets were 50. Dr. C said he'd do a transfusion if it hits 6. But this is definitely contributing to my extreme tiredness all the time. My blood pressure's still abnormally low at 86/50. But this puts my schedule for vacation time right on track. I'll go in for chemo next Monday and then go back November 7th before I leave for Portland.
   The genetics counselor called this morning too. Apparently they only got the test results for one test (which was negative), and we're still waiting for the second one. So I could still be positive the p53 gene mutation. Great.. We'll find out next week.

Friday, October 14, 2011

Still No Mutations

   The genetics counselor called me this morning to tell me the results of the P53 genetic test they did: No mutations found! Which is good, but she's going to see if there are any other tests we can do. It'd be nice to have an answer, just not a bad one.
   I also got a scary bill from the doctor's office today. From August 8th (two months to process?). I called up Tricare and the woman was so nice, she checked all the other claims to make sure they went through properly and even looked into my wig reimbursement. Apparently they denied the claim for a lot of reasons, but someone over there messed up in the filing process. And the receipt I sent had gotten folded over when they imaged it, so it said $45 instead of $450! She told me everything I needed to do to make sure it's taken care of, and now I need to resend everything. She even informed me of how many referral visits I have for oncology and transferred me to the Referral people to see if I could get more. Unfortunately, that's when my phone decided to cut out. So I called Tmobile after that. They can only offer me two new phones for my warranty exchange now since my current one is almost a year old, so I'm going to research my options. It's really frustrating trying to make all these important phone calls when I don't get service inside the house and the wifi-calling on my phone is messed up.
   It's technically my Fall Break until Wednesday. My midterm grades were pretty good considering I haven't been to a single class and how chemo makes my brain feel fuzzy. I'll either be getting chemo this Monday or next Monday depending on how my counts are doing and/or if I can talk the doctor into working around my vacation schedule. We're leaving Friday, October 29th to go to Myrtle Beach/Charleston, and won't be back until November 5th or 6th. But then I'm supposed to leave November 8th for Grace Hopper, so we might have to work chemo into Monday, Nov. 7th instead. I might not be going anywhere if I don't hear back from the physical therapist first. My hand's still swollen and hurts and doing things like folding clothes or scrubbing the bathtub does NOT help at all. Hopefully they can get me in for an appointment as soon as possible.
    My cousin Lindsey's coming up for the weekend and is going to help me landscape our "back yard" for the dogs. It's all dirt and dead plants and poop right now so it definitely needs some work. I also went ahead and ordered the FURminator after seeing some pictures and videos of the magic it can do. It should be arriving very soon. I'm so tired of eating dog hair with every meal.

Wednesday, October 12, 2011

Plastic Surgeon

   I saw a plastic surgeon yesterday (now conveniently located at Dr. K's office). All these older women were there waiting, so excited about having their new boobs installed. It kind of creeped me out. And I've kind of already decided to not have reconstruction done the same time as my mastectomy, especially since I'm only two months into chemo and I have another four to go. I don't want to deal with anything "extra" by the time I get to surgery. Not to mention the five weeks of radiation to follow. But I figured it wouldn't hurt to see the plastic surgeon to see what my options are.
   Since we're planning to do radiation, he said I'm not a candidate for an implant, at least not on the right side. I don't really like the idea of having a foreign object in my body for the rest of my life anyway, especially if it can cause extra complications. The tissue on that side won't heal very well after radiation, so it can't be expanded for an implant. He then squeezed the fat on my stomach (awesome), but said even though there's "some" fat there (thanks), it wouldn't be enough to do both boobs. So they start salvaging other parts of your body. In my case, he said he could use tissue from my back. Four large incisions in three different areas of my body all at once?? No thanks! Plus they'd be taking muscle from my back too. I can't really see the justification of sacrificing (any) muscle on my body for a boob. I'm already so weak from the chemo and the lymphedema in my dominant arm, I'd rather not make it any worse in the long run. Plus I googled some pictures of the stomach scar (pretty sure it's the DIEP flap procedure he was talking about), and it does not look like a fun recovery time.
   I mentioned that if I did get reconstruction, I wouldn't want the same size. Whenever I say that, people always seem to assume I want bigger boobs for some reason. I'm five feet tall, I'd like, for the first time in my life, to have boobs that are appropriately sized for my body. So smaller. Much smaller. It's a nightmare finding bras to fit, and that 32 band size? Pretty sure it should be a 30 but they don't make those. I don't think the doctor took me seriously though, because he kept saying "for the same size" when he was mentioning all the parts he'd have to scrape together from the rest of me.
   He said insurance should cover reconstruction, no matter when I have it done, so that shouldn't be an issue. However, for the best looking results, I should do it the same time as the mastectomy. After another four months of chemo, I can't imagine I'm going to feel well enough to change my mind about it. Plus there's that more important question of why get reconstruction at all? Maybe so clothes fit a little better, or so people don't mistake me for a 10-year-old year girl, or worse, a 10-year-old boy. My husband said he just wants me alive either way. Plus, I'd never be able to feel them. The numbness in my arm still feels weird, and the mastectomy scars should be numb too, I don't want extra tissue hanging off me that I can't even feel. Why pretend to make it seem normal?
    He also kept mentioning how important it is to get back to a good "quality of life". Maybe I'm just a little dazed from chemo brain, but the way he kept saying it made it seem like I would never have a decent quality of life if I didn't get new boobs. If anything, not having extra, unnecessary surgery right now will give me a better quality of life, considering I'll be able to return to normal activities much sooner. I asked if I could just wait until my stomach inevitably gets fatter and THEN have them rip it out to make new boobs. He said that's fine, but geez, he kept trying to emphasize how much better they'll look if I do it right away. Boobs have never been that important to me. If anything, they've caused me a lot of extra stress in my short lifetime and now I'd like for them and any semblance of them to go away for a while.

Tuesday, October 4, 2011

Final Round of Adriamycin! Mmm... Back to Nausea...

    I saw the radiation oncologist again Friday to find out what she wants to do. She said she talked with 3 other radiation oncologists and they all agreed that I should get radiation, but Dr. B herself is still kind of hesitant. Here's a link to the study she was looking at trying to determine what'd be best in my case. She ran through a bunch of numbers and statistics that made me wish I hadn't slept through that statistics class freshmen year, but overall, she said considering my age and the SLIGHT improvement they've seen in patients with the small number of positive nodes and size of the tumor, that we should plan on going ahead with it. I told her they're testing me for the p53 gene and we'll get the results in 3 weeks, which might affect her decision. I'll meet with her again after chemo is over to figure out all the details.
    I finally got that last round of the Adriamycin yesterday. My hemoglobin went up to 9.4 and my platelets were 96. My blood pressure's still pretty low. Dr. C is out for the week, so I saw his assistant Phyllis again. I asked her about the pain in my right hand and arm, and she looked at it and noticed it's starting to swell. Yay for lymphedema. Here's a link for some info on it. She said she'd send me to a physical therapist specializing in lymphedema treatment "when [I'm] ready"? I guess she meant when I'm not getting my ass kicked so much by all this chemo. When I went back today for my Neulasta shot, I ran into her again and asked if I could get a referral sooner since I'm going to be flying across the country in a month. I'll need a compression sleeve before I go on that trip since it's such a long flight.
   I also asked her about possibly rescheduling one of my upcoming chemo sessions so I can go down to SC to visit friends and family October 28th through November 5th. She said to come in for my next appointment as usual and we'll see how my counts are doing. (Knowing me, they'll be low anyway.) And then plan on getting chemo November 7th regardless since I'm going out of town the week before and that week itself. Tight schedule... But it's good to know they'll try to work with me on it. I'll probably be miserable during my Portland trip thanks to chemo.
   Since I'd gone in so late in the day, I guess Phyllis had some free time to chat. She said the fatigue I'm experiencing so much lately probably isn't going to get much better since I'm going into month THREE of chemo and won't be done til FEBRUARY. I also told her I'm thinking about skipping reconstruction altogether or at least delaying it since I'm definitely going to be wiped out by the time I have my mastectomy surgery. She said that's probably a good idea since I'm going to have radiation, and that radiated skin doesn't heal as well as normal skin. So much fun stuff going on...
   On to ACTUAL fun stuff: my mom suggested a birthday party since I'm going to be home for my birthday. But most of my friends are still in Charleston, so we're going to try to have the party down there October 29th. I'm looking into renting a house or something and having my mom cook dinner. It'd be nice to have a post-chemo/pre-mastectomy party too in February or March. Lots of time left to plan for that one though.

Monday, September 26, 2011

Chemo Delayed Again

   As much as I didn't want to get chemo today, I'd rather have just gotten it over with. But my counts were too low again, so I should be getting the last Adriamycin round next Monday instead. They drew the extra bloodwork to send off for the genetic testing. I saw the genetics counselor last Tuesday, and she explained what the results of the P53 gene testing will mean. It's called Li-Fraunemi Syndrome, which basically means the tumor suppressor gene in the body's cells doesn't work right, and that I'd be more prone to multiple cancers in my lifetime. So if I have it, no radiation and more annual screenings hoping to catch stuff early. However, it wouldn't explain Aplastic Anemia. I asked her what happens if this test comes back negative, and she said then they've just hit a wall with what to look for and they'd stop testing me altogether. But we got all the bloodwork and paperwork together and sent it off today, so we'll get those results back in four weeks.
   Two different nurses took my blood pressure today because it was so low (88/60), but Dr. C said he wasn't concerned considering how small I am. I also lost a few pounds, but it's kind of hard to eat much when everything tastes so bad. I asked him about the black line on my nail and he said that's from chemo. He did a physical exam to check the tumor, but it's basically gone now. Which is good, the chemo's working (can I stop now?). I told him how nauseous I was last week, and he said if it happens again to come in and they can shoot something into my port to help.
   I got a copy of my blood counts since he told me they were low, and my hemoglobin was 8.1 and my platelets were only 66, which explains the bruises on my feet from the dogs stepping on them. I just hope my counts come back up at all considering my past medical problems...
   My new chemo schedule might interfere with our travel plans, but hopefully they can do a Friday chemo or something instead of a Monday if needed. But Dr. C OKed air travel, so I get to go to Portland November 9-12 for the Grace Hopper Celebration of Women in Computing. I applied for a scholarship back in April and found out in August that I didn't qualify, but was on a waiting list instead. Someone from the Anita Borg Institute called me last week to ask me if I was going since I hadn't registered yet and the deadline was that night. Turns out I did get the scholarship, but not the second email informing me that I'd gotten the scholarship. But I'm registered now and just need to buy the plane tickets (to be reimbursed later). It's nice having something to look forward to that isn't cancer-related.

Monday, September 19, 2011

Terrible, Terrible Week

   I've spent most of this past week passed out on the couch. I managed to go to my radiation oncology consultation appointment Tuesday and get my Neupogen shot afterwards. The radiation oncologist, Dr. B., doesn't know whether to give me radiation or not. She said if patients have 4 or more cancer-positive lymph nodes removed, they get radiation. But I only had 3. But she's worried about my age. But then she's also worried that my genes are screwed up so radiating me might cause more tumors down the road, but not doing radiation might not cure this bout of cancer.  Great. So she's undecided and is going to check with some other specialists first. I'm going back next Friday, September 30th, to find out what they say. I'm tired of being a medical anomaly...
   I had a test in one class after I got home that day. I somehow got an 82, 10 points above the class average! Not bad for the day after chemo. I had a quiz in another class Wednesday and got an 84. Chemo brain is definitely kicking in, along with the exhaustion, nausea, severe chest pain, a low-grade fever all week, and this terrible taste in my mouth. Usually the side effects lessen by the weekend, but it's now Monday and things are still kicking. I'm miserable.  But I still have three chapters to read in Networking, two homework assignments due for Databases, and a program due Thursday. Of course, these are just the assignments I know about, since I miss a lot of stuff by not actually going to class. But on a brighter note, even if I get D's in all three of these classes, I can still graduate with a 3.5 GPA. Good thing I worked my ass off the last three years so now I can sleep through this one.

Monday, September 12, 2011

A Post About Crap (Literally)

   The nausea's starting to kick in. My appointment was only about two hours this morning since it's only the first part of the chemo. My platelets were 100, which is still pretty low. I only have one more round of the Adriamycin, but the other two parts should be easier on my blood counts (and hopefully the rest of me too). Dr. C checked the tumor and says it feels smaller and flatter and less defined. I asked him about my constantly running nose and he said that's from the chemo. That's the only new side effect I've been noticing, except for the rest of my stubble falling out.
   I stopped by Walgreens after the hospital and found some SeaBands, which are dorky-looking wristbands that use pressure at special points on your wrists to help alleviate nausea. I'm desperate to avoid another week straight of feeling sick, so hopefully they'll work. I also stopped at McDonalds on the way home (bad idea, I know) and got a sweet tea. I could feel the taste get progressively worse over the 20-minute drive home. Water's back to its crappy taste too.
   Another thing going to crap is my brain. I feel like I'm forgetting things all the time and it's SO hard to concentrate, especially when it tastes like there's a dirty sock in my mouth and my stomach hurts and I just want to sleep, sleep, sleep, and then sleep some more. I'll go out to the store and then forget what I came for, and of course I'll have left the list at home. I have a test in one class tomorrow, I just hope I can remember enough to pass it.
   It's way easier to just clean and play with the dogs than to sit down and study or do homework. I got a nice little patio set for the backyard for $32, so the dogs and I can hang out outside (with the mosquitoes). And I bought a really cool pooper scooper, Our Pets Skoop-N-Pak, because there is NO way I'm picking up warm, squishy dog poop when I'm already this nauseous.

   Some pictures of our babies can be found on this Facebook album.

Monday, August 29, 2011

Change of Plans

   We went for round two of chemo today, but my platelets were only at 91. Dr. C said the one study shows that it's most effective to give the A/C chemo combination every 2 weeks, but that there were two other arms that it followed. One was just to do the combo every 3 weeks, though slightly less effective. And the other was to split the A and the C parts, and do them separately every 2 weeks, which is more effective than the three weeks schedule. So we're going to try that, since we kind of don't have many other options. I had my second round of (only) the Adriamycin today (along with anti-nausea meds and steroids). This'll just prolong my chemo, and estimated surgery date, but the side effects should decrease. I'm still starting to feel nauseous though, and my legs hurt, and I'm tired, and that really gross taste in my mouth is coming back. But other than that I'm fine. I'm going in tomorrow to get the single Neulasta shot instead of the 10 individual shots. And then we're going to hopefully do the 3rd round of the Adriamycin two weeks from now.
 
Updates from last week that I missed:

  • We had an earthquake Tuesday. The house shook and scared the crap out of me, but there wasn't any serious damage.
  • Hurricane Irene hit Saturday night/Sunday morning. The power went out around 2 AM and didn't come back on until today around 2 PM. It was terrible.
  • The in-laws are visiting in two weeks and bringing Kyle's super fat dogs. 
  • I had a post-surgery follow-up with Dr. K Thursday. Everything looks fine, and I made appointments with radiation oncology to see if I need radiation after chemo and with their new in-house plastic surgeon, Dr. P, to find out about getting new boobs later. 
  • Kyle and I shaved each other's heads Thursday night. My hair started coming out in clumps Tuesday and was getting EVERYWHERE, so we kind of needed to do it. Walmart finally brought out winter hats though so I stocked up, because my head feels cold all the time now. But it's nice and round (thanks Mommy!), and I keep thinking of that episode of Roseanne where Jackie's rolling the baby to keep his head from getting a flat spot.


Monday, August 22, 2011

No Chemo Today

   I was supposed to get round two of chemo today, but the doctor saw my lab results and said no chemo today. My platelets are 50, and she wants them at least 100 before doing more chemo. My hemoglobin dropped from 12 to 10.2, but my white count is good (6.2), so the shots worked.
   She told me to come back next Monday and they'll check my blood again. They used to give people chemo every 3 weeks instead of every 2 weeks anyway, so she said not to worry about it.
    Not much to do this week then, except start work for my classes.

Sunday, August 14, 2011

And Now I'm Hungry

   I'm feeling much better. I was a little nauseous and tired yesterday, but we managed to go out shopping for new sheets, even though Kyle wanted to whine the whole time. I ended up buying the mattress on my wishlist Friday night, and it got here Saturday afternoon (thanks Amazon Prime!). We've only slept on it one night so far, but I can finally sleep on my side again without it hurting so I think it was worth it. It's much quieter than our other one too, which is good for when I get up to pee five times in the middle of the night.
   The shots are going okay I guess, except for the nasty bruise Kyle left on my leg. My neck and shoulders still hurt from them. And my chest has been hurting since yesterday morning when I breathe in too deep. I'm going to call tomorrow and let them know (what were they going to tell me to do on the weekend besides go to the ER?). I've been checking my temperature and it's been normal, so that's good. I definitely want to switch to the one-time shot instead of 30 more, especially since I'm not having any bone pain. I'll ask about it during my next round.
   My scars look like they're healing okay, the creepy twine stuff finally came off. I'll admit I've been slack on my arm stretches, but I make sure I stretch it out somewhat every day, and it's definitely improving since the surgery. Kyle pointed out the extra piece of skin in my armpit now though. Eww. But I think the feeling's starting to come back.
   I'm glad the nausea's gone at least (for now), but now I have a different problem: It seems like I'm hungry all the time. Food's getting its normal taste back too. It's good to know the week between chemo might not be so bad after all. But it sucks that I have 3 more rounds of this crap, and then some.

Thursday, August 11, 2011

Chemo is Kicking My Ass

    I've spent most of the last two days sleeping... We went back to the hospital yesterday to get the shot situation straightened out. The nurse gave us a huge bag of syringes, an awesome reminder of just how many shots I have to look forward to. The pharmacy called yesterday too and let me know they had another 10 vials ready for me by mistake. We also went wig shopping, which is way harder than deciding on a regular haircut, since this is permanent, and a lot more expensive. I need to make sure I have all the insurance stuff in order first before I spend $450 on some nylon hair. Apparently I still need some "Certification of Medical Necessity" for Tricare to cover it, even though the doctor gave me a prescription for a wig, with the reason for needing one written on it. So I guess I'll ask at my next appointment.
    The anti-nausea medication makes me dizzy and drowsy, but I'm hoping the nausea will start to get better. Everything still tastes like crap. The shots aren't giving me any bone pain, yet, thankfully, but my shoulder and back muscles are really sore. And I've been really shaky, which didn't start until after the first Neupogen shot yesterday.
   
    I can't believe classes start in two weeks...

Tuesday, August 9, 2011

Day After Chemo: I'm Still Alive!

   Today was aggravating. I've been feeling a little nauseous, my ears were ringing last night (Dr. C said it might be from the steroids , and most of the stuff I eat tastes like crap. I spent most of the morning calling Financial Aid at CofC trying not to yell at dumb people. Someone from Disability Services ended up walking my forms over to their office to make sure they had everything in order. I have to call back Financial Aid tomorrow since no one picked up when I tried to call back later. Dr. C called this morning too, to check up on me. He said if I haven't gotten sick and vomited already that I probably won't at all. Oh good.
    Kyle and I went grocery shopping when he got off work, and that was exhausting. I did order some new glasses online really cheap though. Walmart wanted over $120 just to replace my lenses in old frames, but I used Goggles4u and got two pairs of glasses for $55 total. One pair's even tinted and both pairs have fancy coatings on the lenses. There are a bunch of coupons online too if anyone's looking for new glasses. Hopefully nothing will go wrong with them.
    Kyle was supposed to give me my first Neupogen shot today, which we picked up from the pharmacy earlier. Unfortunately, I didn't think to check them there, so when I pulled them out at 9:00, it turns out we only have vials of medication. The nurse told us we'd be getting prefilled syringes, with safety caps. I called the doctor's office and gave the nurse my number to have the on-call doctor call me back. A few minutes later, I had a voicemail on my phone, but it hadn't rung at all. The doctor said he'd called about 3 or 4 times, and that if was urgent, patients usually pick up their phone. Uhhh.. Thanks T-Mobile for my in-home dead zone. Gotta get that taken care of. I called back the nurse and gave her Kyle's number. The doctor says I should be fine for tonight, but to call first thing in the morning to see about getting some syringes.
   I also just added a wishlist to the blog if anyone noticed. I really want a brand-new memory foam mattress before my next surgery because the one we have now is murderous on my new wounds. Christmas would be good timing, hint hint.

Monday, August 8, 2011

First Chemo Session

   We hit up the oncologist this morning for my first round of chemo. They hooked up my port and Kyle kept calling me a cyborg. The nurse pointed out that this one is a newer model and has the three raised spots so it's easy to find. It's right under the incision, but she was able to go around it. We chatted with Dr. C first. He said the bone scan was fine. I got a prescription for a wig, just to have one if I want it later. Arienne came up to visit last week and we went hat shopping, so I have a nice selection right now.
   They took us to the chemo room and we waited around, reading Calvin & Hobbes comics on the awesome Nook Simple Touch ereader Kyle bought for me (already on Harry Potter book four!). They finally hooked me up to some anti-nausea medications and steroids. Then a flush, and then a second round of anti-nausea medications and another flush. A nurse brought out the A part of the A/C, Adriamycin, in 3 bright red syringes. She sat there and injected them slowly through my port. Another flush, and then she brought out the Cytoxan, which looked like normal saline.  I got up to use the bathroom in the middle of this and my pee had a nice bright pink tinge from the Adriamycin. The Cytoxan took over an hour to administer, but didn't give me a headache, otherwise they'd have to spread it out over a longer period of time. Kyle and I kept busy chatting with the nurses getting my prescriptions organized and with the talkative woman next to us, whose hair was starting to come back in. She's on the same schedule as me so I'll see her again. On the other side, an older woman's IV popped out and she started gushing blood everywhere. Lovely.
   Before that fiasco, the nurse was showing Kyle how to give me the Neupogen shots once a day for the next 10 days. It took many phone calls to make sure the pharmacy had them and all the information since they're a "high dollar drug," and I'm going to pick them up tomorrow. If the bone pain gets too bad, I'll stop them altogether and see how that goes. Otherwise, I'm hoping it'll be okay and I can switch to the single injection that releases the medicine over 10 days instead of running from Kyle trying to stab me every night (Hey, Mommy managed to give them just fine the last time, even after a couple of beers...).
   The nurse finally undid my machinery and trimmed some of the twine-like stitches popping out and irritating me. Dr. C stopped by to check on people, saw the nurse snipping away at my chest, and took off. Apparently blood and needles creep him out, and he's an oncologist...
   They let us leave after that (four hours later). I felt fine, except maybe a little nauseous from watching that poor woman bleed all over the floor, and heavy because they pumped so much crap in me. I came home and had to make some angry phone calls because the receptionist said I was out of visits for referrals, when I've only been 3 times and I had 6 allowed visits. I called the McGuire clinic, who told me the doctor has to call that in to Tricare. So I called the doctor's office who said they don't do that. She ended up putting it in and told me it'd probably be denied. So I called Tricare and told them I didn't really know what the heck I needed. As long as I still have visits (which I know I do), it should be fine, and since the doctor called it in, it should be approved. Tricare said doctors' offices just don't feel like doing it sometimes, but that it shouldn't be denied. It may be a pain in the ass to navigate Tricare, but I will admit once you get past that, they are awesome. I think I've paid $13 total for prescriptions just because I went to CVS instead of on base. So far, they've covered over $80,000 worth of treatment, and that was before chemo started. They did, however, deny the genetics counselor's request to test me for the P53 gene, but she's going to try to get Dr. C to order it instead.
   I called up the school's financial aid department after that to make sure my scholarships are going to go through. Some idiot part-time student-worker basically laughed as he read off all my scholarships that I would lose if I'm not a full-time student, even if I applied for a reduced courseload. He finally transferred me to someone more important, but she wasn't very nice either. She said what he said was true, UNLESS I was approved through Disability Services and she received notification. Well duh, that's what I've been doing... I called back Disability Services and they hadn't sent my paperwork out yet, which explains everything. So I will check again tomorrow to make sure it's all in order. And it better be, because I don't have a spare $4,000 sitting around.
   When I finally finished yelling at people over the phone, Kyle and I took a much needed nap on our comfy couch. I popped ANOTHER anti-nausea medication, Compazine, before our nap because I was definitely feeling bleh, and still am (even after THREE anti-nausea meds?). I did eat, and refilled my water bottle hoping to make the water taste better. Turns out it wasn't the chemo acting up, but just some really nasty hospital water. I'm still kind of nausea and drowsy, and my stomach hurts, but then I realized I recognized a familiar pain: menstrual cramps! Yea, it's about that time... That's all I need right now.

Friday, July 29, 2011

Bone Scan

   I had a bone scan today. They did the radioactive injection first and then we had to find something to do for two hours until the scan, so we stuffed ourselves at a NJ diner. The scan was pretty short using the same open-sided machine as my heart test, but the tech person strapped my arms down and put a rubberband around my feet so I wouldn't move. She said I didn't need any extra x-rays, which I'm guessing is a good thing because she let us leave after that and gave me a copy of the images (below).
   The home nurse also came by to do my discharge papers since the drain's out. She seemed surprised that I'm planning to get a mastectomy, and that I wanted smaller boobs instead. She said mine were a "good size for [my] height and weight." Uhh? No, I will definitely get a smaller, less problematic set that won't try to kill me.

   One of the web comics that I regularly read had an oddly appropriate, but very depressing comic today: http://xkcd.com/931. I'm sure Grandma's book of Russian obscenities has other ideas of what we'd all like to do to cancer...

Thursday, July 28, 2011

Yay I Can Shower Again!

   Finally got my drain taken out today. Dr. K ripped all the tape off from my other bandages first, so I barely noticed when she pulled the drain out of my side. The hole will "leak" a little for a few days, but should heal up fine. She showed me some exercises to do to keep my arm and shoulder flexible. (I also pointed out my double jointed elbows, and she told me to let the genetics counselor know.) I'm scheduled to see Dr. K again August 25th to make sure my exercises or working or else I'll go see a physical therapist. I'm also penciled in for January 10th or 17th for the bilateral mastectomy, which means I have to get in touch with the plastic surgeon before then to find out about reconstruction. Dr. K said the results of the lymph node surgery showed that 3 of the 10 she removed were cancerous. Good thing they're gone.
   Now I'm going to go take my first shower in 9 days. Goodbye armpit odors!

Update post-shower:
   I don't know what was scarier: seeing the four inch incision under my arm for the first time, or the small forest that has taken root in my armpit. Omg.

Wednesday, July 27, 2011

First Bone Marrow Biopsy Awake

   I had my bone marrow biopsy this morning. Awake. They gave me Ativan first though which made the room start spinning. I was much more exposed for this one than the previous ones, but they gave me a sheet to cover up my butt. Dr. C started poking my back bone to show where he was going to do it, and that was probably the most painful part of it all. He numbed my back and the medication hurt going in, but that was it. Watching Kyle's face as he watched him do the procedure was the worst part. Dr. C was having trouble getting into my "21-year-old bones" and was cranking away with a needle back there. Luckily I couldn't feel any of it, I was just trying to not get pushed off the table. It hurt for like a second when he sucked out the marrow. And my leg started to hurt when he broke off part of the bone for the biopsy. But that went away after a few seconds, and they were done. They showed us the two capsules of marrow fluids and the pieces of bone they got. Ouch.
   Then I passed out for a few hours. (Why didn't they wait until the Ativan knocked me out first?) Now my back is sore like usual. I'm looking forward to getting the drain out tomorrow so I can shower (8 days). Aunt Janie and Grandma came up to visit, so hopefully I can go in earlier to have the doctor remove it. And Aunt Janie bought me a fancy blender so we can make smoothies now, since the chemo's probably going to wipe out my appetite.
   Dr. C didn't have any updates for me, the lymph node tests aren't back yet. My heart's fine, as I heard yesterday. The genetics counselor wants to see me again next week to get more tests done.
   My arm pain's getting better, but now it just feels like I'm getting punched in the armpit, repeatedly. The vicodin acts like speed when I'm trying to fall asleep, so I've just been taking extra strength Tylenol. My right arm also won't bend out as far anymore, which might be a good thing, since the double jointedness in my elbows creeps everyone out so much. Everything else is just itchy, itchy, itchy, including the back of my arm, which is numb so I can't scratch it.

Tuesday, July 26, 2011

No Cavities!

   I had the MUGA heart test this morning. They injected some kind of radioactive dye into me, waited 15 minutes, and then took fancy pictures of my heart. Afterwards, I asked the tech woman how long would it take for the results to come back, and she said a few days, but she said my heart looked normal even though she wasn't supposed to tell me the results (my number was 60-something, and normal is 50). She even showed me the images. Yay, something's not broken on me for once.
   The home nurse came by today again too. Since my drain has less in it each night we empty it, she's pretty sure it'll be taken out Thursday. It's down to 12 mL now and yellowish/light-red. Still can't shower though.
   I had a dentist appointment today to make sure my teeth are okay for the next 6 months since I'll be on chemo. I didn't have any cavities, so he said, and my teeth looked fine. But he also recommended I get my wisdom teeth removed, "maybe sometime between your treatments?" Major surgery during chemo? I don't think I'll be going back to him... I asked about dental implants too for when my bridges fall off, but he told me to just get bridges again since they look so good (thanks Dr. Pournaras). There's definitely got to be something wrong with him if he's trying to talk me out of expensive non-insurance-covered procedures. But oh well, at least I don't have any cavities for now.
   As for school, I got in touch with my other professor today. I need four classes to graduate, one required for my major, two electives for my major, and pre-modern history. I've already been approved to take the two electives remotely, and was waiting for the last one to get approved. She said we would work something out, and if not this semester, the equivalent graduate level course is offered in the Spring. I got a note from my oncologist recommending I only take 9 credit hours this semester, and sent it to disability services at the college. If it's approved, I can take my 3 classes and maintain full-time status, which means keeping all my scholarships!  I'm hoping to take an online history class in the Spring at the local college and graduate on time in June. We'll see how far my plans get this time.

Friday, July 22, 2011

Chemo Info Session

   We saw the oncologist today. I'm starting chemo August 8th. Since my cancer is lymph node positive, Dr. C said they have to use an aggressive treatment, since the cancer cells have shown they can spread to other parts of the body. I'm getting a bone scan next Friday to make sure it hasn't gotten into my bones (they already checked my lungs with a chest xray and my liver from bloodwork). I'm also getting a heart test done Tuesday to make sure my heart muscle can handle all the crap they're about to pump into it. And to add to all the fun, he wants a bone marrow biopsy to see how robust my bone marrow is after all my aplastic anemia treatments. Unfortunately, I have to be conscious for it since they don't have the proper equipment nearby for anesthesia. They said they'll give me something to sedate me and I really hope it's something good.
   The chemo's going to be in two phases. The first one is Adriamycin and Cytoxan by IV once every 2 weeks for a total of four treatments. The day after each treatment I'm supposed to get an "antidote" (yea they're definitely poisoning me) of Neulasta which will stimulate my white blood cells so I'll be well enough in two weeks for the next round. The problem is I've had shots from the aplastic anemia treatment (Neupogen) that did the same thing and gave me really bad bone pain. Since the Neulasta is given once and lasts two weeks, Dr. C suggested I get the shots individually instead so at least if my bones start hurting, we can stop it right away. We just have to see if the insurance will cover it.
   Phase II is Taxol by IV once a week for 12 weeks. Dr. C says this drug is much easier to tolerate than the first two, but will still keep my hair from growing (I'll be bald about 2 1/2 weeks after the A/C treatment in Phase I). I'll also start Herceptin at the same time, by IV once a week for 12 weeks. After those twelve weeks, I'll get it every 3 weeks for 9 months. Since the cancer is HER 2 positive (15-25% of breast cancers are), the Herceptin works as an antibody (?).
   Once I'm done with the poison sessions, I'll start Tamoxifen, a small pill once a day for 5 years. Since my cancer's estrogen-receptor positive and progesterone-receptor positive (66% of breast cancers), the anti-estrogen is supposed to help stop feeding it hormones, but it could put me at risk for premature menopause (at 21? Seriously...?). I will also have my surgery after the chemo, with the choice of a bilateral mastectomy (take them both off) or lumpectomy (just take out what's left of the tumor). Dr. C did say that by keeping my breasts, I would have a slightly higher chance of either the original cancer coming back as a local recurrence or a new breast cancer showing up, since breast tissue would still remain. Considering my luck already, I really think it'd be better to have the bilateral mastectomy. At least I'd get new boobs out of this mess. And maybe I could avoid having my left lymph nodes ripped out because the right side still really hurts.  Either way, I still need radiation after surgery because my lymph nodes were positive. That'll be for 5 1/2 weeks Monday through Friday.
   I'm still getting the drain taken out next Thursday. A nurse came by yesterday and today to check it and the dressing. She said everything looks good, no swelling or bruising surprisingly. I'm too creeped out to look. The stuff coming out is starting to turn yellow, which is good. Only six more days til I can shower! Eww..

Wednesday, July 20, 2011

Day After Surgery

   They doped me up on a bunch of pain killers last night but it didn't help me sleep at all. When I finally fell asleep around 6, the nurses came in to wake up the old lady next to me, who was wearing a hearing aid. Dr. K's assistant, Donna, came in pretty early to check on me and get my discharge paperwork ready. She told me they did the axillary lymph node dissection because when they checked the sentinel node, they couldn't get clear results whether it was cancerous or not. I asked if that was normal, but she said that it rarely happens (go figure). She said it was just kind of a grey area of what to do and they discussed it with the oncologist during surgery, so they just decided to take everything out that was there. I'm getting the drain out next Thursday and a nurse is coming out to my house tomorrow to check on me again.
   I got home around 1 after fighting with a missing date on my controlled substance prescription (thanks Doc...), but we went to the grocery store and I was feeling fine. I'm supposed to be taking Vicodin every 3 hours. It's making me incredibly nauseous, but it stops the sudden sharp/burning/stabbing pains in the back of my arm. I spent most of the day knocked out on our fancy new reclining couch (very good idea Kyle), while Mommy yelled at the little brats screaming their heads off in our front yard. Maybe I'll go throw up on them next time... But for now, I think the milk of magnesia is finally kicking in! Yes!

Tuesday, July 19, 2011

First Surgery Today

Surgery was scheduled for 10 AM this morning, so Mommy and I got to spend 3 hours waiting in an ice box. Dr. K put a fancy new port in on my left side, with a new scar since the old one's been cut open too many times already. I requested she sew it on extra tight so it doesn't come loose like the last one. No problems so far, it's only a little sore.
She also did the biopsy on the mysterious lump the MRI found in the left breast and got the results right away. If it had been cancerous, she would've done a sentinel biospy on that side too. Luckily it wasn't!
The right side wasn't so lucky apparently and Dr. K ended up taking out more than the sentinel node. I now have a really gross/bloody drain coming out of that side and a very painful armpit. A nurse just emptied it and measured 20 mL. She said it's better that the stuff comes out, otherwise it could cause an infection. I'm also on antibiotics just in case (and Vicodin mmm).
The doctor's going to talk to me in the morning to go over everything she did and what I need to do now. I have an appointment to discuss chemo this Friday, but I also have a dentist appointment next week which I need to get done before they screw over my immune system (I actually go to the dentist unlike some members of my family...). So I don't know when chemo starts yet, but will keep posted.
Now I get to spend the night in the hospital next to Miss Virginia and her pee pads. Oh and my own pee is blue for the next 24 to 48 hours.