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.