Delayed Radiation

   Slacking off on the updates again. But most of you probably saw me last week in Charleston so I'm obviously still alive. Our vacation was barely a vacation but I got all my errands done and I finally graduated from college (with honors thanks to my 3.875 GPA, which I'm allowed to brag about).
   I had a job interview the day after we got back, but I don't think I got the job. The guy I was supposed to see had some kind of emergency, but the other guy I talked to said my technical skills weren't where he wanted them, but that my attitude was right. Oh well, it's probably better to wait until after radiation to work anyway.
   I went to the emergency room later that day too. This incision problem has just gotten worse. The doctor there said it looked like an ulcer, but again, not infected. They gave me some antibiotics anyway. And some non-stick bandages that won't irritate it more.
   I saw the radiation oncologist Friday to take some "pictures". I got Dr. B to look at my incision first since I was supposed to start radiation yesterday (Monday). She gave me some Silvadene cream to put on it until I saw my surgeon. I have an appointment to see Dr. B again May 29th, and will probably start radiation then instead. The "pictures" that they kept talking about involved me pretending to get radiated, lying half-naked on a tiny wooden board five feet in the air with this huge scary machine shooting laser beams across my chest. The elaborate tree picture on the ceiling was a nice touch and all but the machine blocks it completely, and instead I had to stare at a reflection of my flat, scarred chest for 30 minutes. Thankfully when I actually get radiated, it won't take so long, because my arms were starting to go numb.
   I finally saw Dr. K Monday. That gross red gooey spot on my incision? Just my skin coming apart. The scar tissue is so thin and weak, it's just splitting open. Apparently the moisturizing cream I've been using wasn't enough, so she told me to go buy ointment and make sure it stays moist. All the time. She said the other side might do the same thing. Great. But I can go ahead and start radiation because there's nothing I can really do about it. The radiation might make it better or worse, so I guess we'll see.
  I'm getting the Herceptin again tomorrow. And I'll find out Thursday about starting physical therapy.

Fat Pads, Radiation Tattoos, and an Oozing Incision

Oops, I can't believe it's been a whole month since an update.
   I had another MUGA heart scan the day after my radiation appointment, and everything's okay, so I've been getting the Herceptin every three weeks as planned (only seven more months!).
   I had another radiation appointment for the planning stuff. They gave me three tiny tattoos, one on each side of my chest and one in the front on the right side. These are to make sure I'm lined up correctly everyday when I get treatment. She had to redo the tattoos three times to make sure they were visible enough (which was fine with me because I want to make sure they're radiating the right spot!). It just felt like she was digging holes in my skin. And then I bled all over my shirt.
   I go back for another prep appointment Friday, May 18th, before I start the treatments. My appointment time is 11:30 everyday and it should only take about 15 minutes each time. I'll see Dr. B once a week for bloodwork and a checkup to make sure my skin hasn't fallen off I guess. I tried to fill my prescription for the cream that's supposed to help, but the clinic pharmacy could barely read the handwriting. I saw three pharmacists in the back on their smartphones trying to figure out what "Prutect" was while we waited for 30 minutes. They thought it was over-the-counter and had no clue what it was for, even after I told them. We finally just left and one of them ended up calling me to say they had to order it and it'd be a few days (this was 2 weeks ago?). This is why I go to CVS and just pay the copay, at least they get you in and out in 15 minutes!
   I also went to visit Dr. K. Twice. Without an appointment. I noticed the left side near my armpit looks swollen, so I called and she told me to come in. She did an ultrasound to make sure there's no fluid and said it's just fat. Normally, breast tissue weighs down the fat in that area so we don't notice it, but since I'm so little, it looks more obvious. She said she can thin it out when I get my port taken out, and she'll fix up the old port scar. She'll have to do it as outpatient surgery, but I wasn't looking forward to having the port taken out in the office while awake anyway.
   I must have missed her, so I went to see her again a few weeks later. The right incision was starting to ooze near my armpit. She looked at it and said it wasn't infected, but that the bandages I was using were tearing up my skin. So she gave me some waterproof ones that I can change less often. But it's STILL oozing. Dr. C looked at it today and said it's not infected, and that an infection would be very obvious. So he stocked me up with some more bandages, and I just need to wait it out. He explained how the incision is very taunt in that area and how every time I move my arm, it's putting more pressure on it. So it's basically the incision trying to split open. He did mention that they might not start radiation on schedule if I'm still oozing. So hopefully it'll start healing properly so I can get all this crap over with. It's really hard to NOT use my right arm so with my luck this is going to take a while. I was reaching up for something earlier and suddenly felt shooting pains all down my arm. Gotta love lymph node dissections...
   I finally went to the dentist for a checkup and cleaning (unlike certain other members of my family!). I found a new dentist in Mt. Holly and they were much better than the last one. Nobody sprayed my face with water this time. I had two cavities, one of them was next to the bonding from my fake tooth. I didn't realize that could happen. But the dentist was great and smoothed down both sides for me so it'll be less likely to develop more cavities. They do the Maryland bridges too so when these pop off, I have somewhere to go to fix them.
   Besides that, I've been feeling fine. My energy level has definitely improved, even though radiation is going to make me tired again. But I'm done with classes and college! Graduation is May 12th, and it seems like EVERYONE in my family is going. But afterward, I get to relax a little and spend my summer applying/praying for jobs.

Radiation Bummer

   We saw Dr. B today. The nurse who took my vital signs asked what my real age was, because she didn't believe I was only 22. At least someone thought I was older and not younger this time, especially with this new flat chest.
   I was really hoping with the reduction in the tumor size from chemo and the clean margins and the low grade that I would be able to skip radiation. But since the cancer was still there after chemo, there could be other cells in that area. And since chemo got delayed/reduced so much because of all the side effects, even Dr. C recommends I get radiation. So Dr. B has a definite decision now, and I'm going to get 28 treatments or 5 and a half weeks.
   She said she's not going to radiate the lymph nodes in my armpit, since they were all removed, but she's going to do the whole breast area and the lymph nodes above my collarbone. Some possible side effects: skin thickening, a permanently darkened/reddened area, greater propensity to rib fractures, some minimal lung damage, and, rarely, secondary cancers. And the hair might not grow back in that area, which is the only good thing I see about all this. With the costochondritis at least, she said that the patients who develop it during treatment usually get better after treatments end, and that if it is an inflammatory issue, the radiation might actually make it better by killing off the white blood cells in that area.
   She says if I don't get radiation I might not even be around later to worry about a local recurrence. And if all of my doctors are recommending I do it, surely it's for my benefit. We're waiting until after my graduation at least, and I'll start Monday, May 21st, after we get back.
I'm really bummed out, but this is just cancer being crappy as usual.

Skipped Herceptin

   Now that I only have regular appointments every three weeks, I'm probably going to be lazy and update a lot less. I had a MUGA scan last week, but Dr. C called the next day to tell me the number was lower than he wanted, so I didn't get the Herceptin today. It was only 52, and my first two were 65 and 55. He said it's still normal, but I'm at a certain threshold where they want to wait and see if it gets better before giving me any more Herceptin. I have another MUGA scan scheduled for April 4th and see the doctor again April 11th.  I asked for a copy of my counts as I was leaving and apparently they still had me in the system as male. My hemoglobin was 8.7, my platelets went down to 112, but my white counts are good. Hopefully that won't mess up my surgery date next Tuesday. I'm also supposed to start the Tamoxifen when I get home from the hospital. The hot flashes stopped a few weeks ago thankfully, but this medication will probably start them up again. And I'm supposed to be on it for the next five years. Oh what fun. Besides the typical menopausal symptoms, it also has rare side effects of blood clots and uterine cancer (just can't win).

   My chest still hurts (four weeks now?). He said it's a good thing that it hurts when I push on my ribs because it sounds like a cartilage issue and not something to order a bone scan for. He even said it sounded like costochondritis, which I thought I had told him before? But either way, at least he's familiar with it. I realized I've been dealing with this on and off for almost seven years now. The only thing I can do for it is pop ibuprofen and slap a heating pad on my chest. I just hope it gets better before surgery next week.

   I saw Dr. K for a pre-op appointment last Thursday for the list of questions I've been making. She said the surgery might make my chest pain worse because it'll feel tight, but that it's fine to keep taking the ibuprofen, as long as I don't drink anything the night before surgery. And yes that crazy thing in my chest IS a power port, that's all they use apparently. I was supposed to get a booklet and a card when I was in the hospital, but she's going to try to get me another one. I should only be in the hospital for one night and the surgery should take less than three hours. I asked her not to leave any extra skin, and she said it'll be completely flat with the scars slanted with the way the muscles underneath naturally stretch. I'll have drains again, but I won't have that terrible nerve pain since they're not messing with any more lymph nodes. She said I could drive once the drains are out and I'm not drugged up on painkillers. 

   I tried to make an appointment with the radiation oncologist, but they told me to call back after my surgery. Dr. K said they can start radiation two to four weeks after surgery, but that seems too soon and I don't see how my skin would have time to heal before then? We're going to SC for a week in May so they're going to have to work around that anyway. I'm more concerned about what the heck radiation is going to do to my chest in the long run, especially with this ongoing chest pain and my swollen arm. The radiation oncologist was unsure at first whether to do it or not (September and October entries). Maybe whatever they find during surgery will influence it. Either way I'm screwed.

Skipped Taxol #11

    Treatments 7-10 of Taxol were pretty boring, just the usual tiredness and some numbness in my fingers. But last week sucked. I started to get some chest pains Saturday. No worries because it only hurt if I breathed or moved, not that I need to do those things on a regular basis. I popped some Tylenol and ibuprofen which is what the doctor told me to do when I had chest pain from the Neulasta shots. It helped a little, but it got a lot worse the next day, so I started taking Vicodin leftover from my surgery. Apparently Vicodin and Benadryl are two drugs that no longer help me sleep.
    I called the doctor Monday, since it had only gotten worse and the Vicodin was just making me feel sick. They ordered some kind of CT scan on my chest for later that day. When we got there, the nurses asked if there were any chance I could be pregnant. Doesn't anyone watch "I Didn't Know I was Pregnant"? Even though I had a whole list of evidence of why I SHOULDN'T be pregnant, they got really worried when I said I couldn't remember the date of my last period (thanks chemo!), so worried in fact that they almost wouldn't let me do the chest scan. Really? They were more concerned about a nonexistent fetus with a chemo-induced tail than the fact that I was having severe chest pains and needed a scan to make sure I didn't have a life-threatening problem with my lungs that would have killed the fetus anyway? Good to know the medical community's priorities when it comes to women of childbearing age.
    When I FINALLY convinced them that NO I'm not pregnant, they gave me an IV to insert the dye for the scan. I asked if they could use my port, but they said it had to be a "Power Port" and I had to have a card identifying it. Funny because when I asked about the three little alien bumps coming out of my skin above the port, they said it was like that so other facilities could use it too (easily identifiable). I'll ask the doctor about it next week. Instead, the nurses had to do an IV in my arm, and she so kindly told me, since the dye goes in really fast, they have to use a larger needle. Sweet. But even better when was they put the dye in later, and they warned me that it'll make me feel really warm and like I've peed my pants. "Warm" was an understatement, but it was a really strange feeling. Luckily, the scan itself only took a few minutes. They sent the results to Dr. C and sent me back out to the waiting room. Then they came back out to tell us to go home, everything was normal on the scan. Ok, but my chest still hurt?
    So I toughed it out that night and the next morning. Then I had a really bad wave of nausea and dizziness and heat hit me on the way to the hospital for my appointment. That combined with the severe pain in my chest and not being able to breathe was super fun. Thankfully the doctor has some sense and wasn't going to try to give me chemo that day, but I think it was more due to the numbness in my fingers than the chest pain. But I would've flipped out if he had tried. I think my body has maxed out on chemo at this point. He has no idea what's going on with my chest pain, because everything seemed normal. I think the chest pain's just the same thing I've had multiple times before (costochondritis) and the stress of six months of chemo made it worse. I asked the doctor if it is the same problem as before, won't radiation make it worse? He said it's just a "necessary evil" and that I'll basically just have to deal with it. Then again, he's not in charge of radiation, so I'll discuss it with the radiation oncologist before they start zapping me. For now, he told me to take some ibuprofen and see if that helps. It's definitely helping more than the Vicodin did.
    Besides the crappy week from the chest pain, my fingers and toes have just gotten worse. I noticed within the last week that when I start walking sometimes, both my feet will hurt and tingle a little. And when I dried my hands on a towel, I noticed my palms really tickled, but not in a good way. My fingertips feel really dry and puffy and it's way more noticeable all the time now instead of just when I use them. So I might be done with chemo. We'll see next week if the numbness is any better and if I can get the last treatment. I asked if the chemo'll be any less effective by stopping early, but since I've had 10 out of 12 treatments, Dr. C says it should be fine at this point. Plus, I'm kind of sick of chemo. I just got the Herceptin yesterday. We were out of there within 45 minutes of seeing the doctor. Good thing, because having an appointment after 9 means they run out of seats. Even though the Herceptin alone should be nothing compared to chemo, my lower legs and the top of my feet really hurt last night, so I guess muscle aches are still a problem.
    I also told the doctor I think I'm having hot flashes, and he said it's likely the chemo's put me in menopause and my ovaries have stopped functioning (even though my mother didn't believe that we both could be having hot flashes). That would explain the missing period. I noticed a few weeks ago I'd randomly get really hot at night, but I thought it was just because our second-floor bedroom is a furnace. But then it started happening in the middle of the day too. For someone who's usually cold ALL THE TIME, random waves of heat are kind of alarming, and then afterward, I'm even colder.
    On my To Do list: I'll need to have another MUGA scan to make sure the Herceptin isn't ruining my heart, call Dr. K to reschedule my surgery to an earlier date, call Tricare to fix their stuff as usual, pass the first round of tests coming up in my freshman-level classes, and buy some 100% cotton sheets.

Not So Boring Update

   I got Taxol #5 today. I'm supposed to have 7 left, but since my fingers are getting worse, I might not be able to finish all 12 treatments. If they're still worse next week, Dr. C says we're going to stop the Taxol altogether and switch the Herceptin to every 3 weeks instead of weekly. This would also bump up my potential surgery date to February instead of the end of March. I have an appointment with the surgeon January 19th, but they might call me if something sooner opens up. AND this would mean I could potentially finish radiation before  graduation (May 12th) instead of trying to schedule around it. I really wouldn't mind finishing chemo "early" because it generally makes me feel like crap, but I also need to make sure I do as much as I can this time to prevent this from happening again. Dr. C says it's about balance, and the numbness in my fingers might never get better so we don't want it to get any worse. So we'll see what happens next week.

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!

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.

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.

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.

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.

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..