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.
Showing posts with label college. Show all posts
Showing posts with label college. Show all posts
Tuesday, May 22, 2012
Thursday, May 3, 2012
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.
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.
Wednesday, January 18, 2012
Five Weeks Left of Chemo
Taxol #6 was last week. For some reason, my fingers suddenly stopped feeling all tingly, and the numbness seemed to have leveled off, so I might end up doing all/most of the Taxol treatments after all. My platelets were pretty low last week though, around 60, so Dr. C was a little worried about that.
I met with the breast surgeon for a pre-op appointment last Wednesday. All she wanted me to do was sign a paper basically. She went over all my options again. I told her the plastic surgeon said I couldn't get an implant on the right side since I'll be doing radiation, but she says that's not true. Okay? ...But the plastic surgeon she referred me to, who shares her office, refuses to do it. She also said that moving the fat alone from my stomach into boobs wouldn't work because you need the blood supply provided by a muscle. Otherwise you just have "dead fat" hanging there. Good mental image. Either way, I told her I don't like the ideas of sacrificing muscles for boobs, having foreign objects in my chest for the rest of my life, or, more importantly, extra and unnecessary surgeries at this point. She pointed out that having a mastectomy on the left side could be considered "unnecessary". Except let's remember that my breast tissue is potentially deadly and leaving any of it attached to my body does not seem like a good idea. And that's really the best argument she could come up with to try to convince me to get immediate reconstruction? I can personally live with my decision (and will probably live longer because of it), it's the rest of the society that seems to have a problem with me going boobless. As of now, my surgery's scheduled for April 10th if everything goes according to plan (ha).
I had Taxol #7 yesterday. My platelets and hemoglobin are looking better. Dr. C said he can't even feel the tumor at this point, just some "thickening" from the biopsy. He asked if the breast surgeon examined me and was surprised she didn't. So I took the opportunity to ask him if my ribs would be sticking out once my boobs are gone. Apparently they won't because they leave the muscle intact in today's modified radical mastectomy. Good to know. Kind of wish the surgeon had gone over some of this, except I was at a blank when she asked if I had any questions.
My mom came up to visit last week and cleaned the house for us (thanks Mommy!), even though she might have been trying to kill the dogs by using toxic chemicals to scrub the floors. I almost killed them myself earlier when they escaped out the front door, which was the fault of the HVAC guys who just stood there like idiots with the door wide open as the dogs took off. Luckily Kyle came home for lunch right as Zeus was taking a dump in the neighbor's yard and snatched him up mid-poop. When the guys were leaving, I asked what we could do to make the downstairs warmer, and they gave me another stupid look and asked if I'd gotten a letter from housing saying when the maintenance guys were coming. I thought THEY were the maintenance guys! I have no clue who these men were that I let into my house and the real maintenance people never even showed up. And I'm pretty sure the heat's broken now because the house is freezing.
Very frustrating day. And to top it off, the numbness/tingling in my fingers seems to be coming back, making it painful and irritating to do schoolwork. And the new hair that's been growing on my head since I finished the Cytoxan is starting to fall out. It's about an inch long all over, so this is pretty depressing. I should've seen this coming though since my eyebrows are still pretty sparse and I mysteriously haven't needed to shave my armpits for weeks. Thankfully only five more weeks of chemo.
I met with the breast surgeon for a pre-op appointment last Wednesday. All she wanted me to do was sign a paper basically. She went over all my options again. I told her the plastic surgeon said I couldn't get an implant on the right side since I'll be doing radiation, but she says that's not true. Okay? ...But the plastic surgeon she referred me to, who shares her office, refuses to do it. She also said that moving the fat alone from my stomach into boobs wouldn't work because you need the blood supply provided by a muscle. Otherwise you just have "dead fat" hanging there. Good mental image. Either way, I told her I don't like the ideas of sacrificing muscles for boobs, having foreign objects in my chest for the rest of my life, or, more importantly, extra and unnecessary surgeries at this point. She pointed out that having a mastectomy on the left side could be considered "unnecessary". Except let's remember that my breast tissue is potentially deadly and leaving any of it attached to my body does not seem like a good idea. And that's really the best argument she could come up with to try to convince me to get immediate reconstruction? I can personally live with my decision (and will probably live longer because of it), it's the rest of the society that seems to have a problem with me going boobless. As of now, my surgery's scheduled for April 10th if everything goes according to plan (ha).
I had Taxol #7 yesterday. My platelets and hemoglobin are looking better. Dr. C said he can't even feel the tumor at this point, just some "thickening" from the biopsy. He asked if the breast surgeon examined me and was surprised she didn't. So I took the opportunity to ask him if my ribs would be sticking out once my boobs are gone. Apparently they won't because they leave the muscle intact in today's modified radical mastectomy. Good to know. Kind of wish the surgeon had gone over some of this, except I was at a blank when she asked if I had any questions.
My mom came up to visit last week and cleaned the house for us (thanks Mommy!), even though she might have been trying to kill the dogs by using toxic chemicals to scrub the floors. I almost killed them myself earlier when they escaped out the front door, which was the fault of the HVAC guys who just stood there like idiots with the door wide open as the dogs took off. Luckily Kyle came home for lunch right as Zeus was taking a dump in the neighbor's yard and snatched him up mid-poop. When the guys were leaving, I asked what we could do to make the downstairs warmer, and they gave me another stupid look and asked if I'd gotten a letter from housing saying when the maintenance guys were coming. I thought THEY were the maintenance guys! I have no clue who these men were that I let into my house and the real maintenance people never even showed up. And I'm pretty sure the heat's broken now because the house is freezing.
Very frustrating day. And to top it off, the numbness/tingling in my fingers seems to be coming back, making it painful and irritating to do schoolwork. And the new hair that's been growing on my head since I finished the Cytoxan is starting to fall out. It's about an inch long all over, so this is pretty depressing. I should've seen this coming though since my eyebrows are still pretty sparse and I mysteriously haven't needed to shave my armpits for weeks. Thankfully only five more weeks of chemo.
Sunday, January 1, 2012
Boring Update...
Not much has been going on with this chemo. I go Tuesday or Wednesday each week and hang out for 4 or 5 hours getting the Taxol and then the Herceptin. They only give me a pill of Benadryl, so it's not as bad as the IV version, but I still end up taking a nap while I'm there.
Four down, eight to go. And then surgery. And then radiation. And Herceptin for another nine months. And Tamoxifen for five years. Fun fun.
For now, I've just been lounging around since I'm on winter break for school. Classes start again next Monday, but they should be more "fun" this semester. Of course anything's more fun than trying to finish my last few major classes while going through the worst part of chemo (got all As by the way, but I'm pretty sure the professors felt sorry for me, and didn't want to go to hell for giving the cancer student bad grades). My head has definitely cleared up on this chemo, so I can actually multitask again. I only get nauseous for about a day now, but it's not nearly as bad as before, more of a general "bleh" feeling. They don't normally tell me my blood counts unless I ask, but they've been high enough to give me chemo. I have been pretty tired, but it's manageable. My biggest problem right now is that my nose keeps getting clogged up with some bloody clots (ew gross I know) and my fingers and toes are definitely starting to go numb from the Taxol.
As least my hair's growing back in (for now).
Four down, eight to go. And then surgery. And then radiation. And Herceptin for another nine months. And Tamoxifen for five years. Fun fun.
For now, I've just been lounging around since I'm on winter break for school. Classes start again next Monday, but they should be more "fun" this semester. Of course anything's more fun than trying to finish my last few major classes while going through the worst part of chemo (got all As by the way, but I'm pretty sure the professors felt sorry for me, and didn't want to go to hell for giving the cancer student bad grades). My head has definitely cleared up on this chemo, so I can actually multitask again. I only get nauseous for about a day now, but it's not nearly as bad as before, more of a general "bleh" feeling. They don't normally tell me my blood counts unless I ask, but they've been high enough to give me chemo. I have been pretty tired, but it's manageable. My biggest problem right now is that my nose keeps getting clogged up with some bloody clots (ew gross I know) and my fingers and toes are definitely starting to go numb from the Taxol.
As least my hair's growing back in (for now).
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.
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):
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:
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).
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:
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!
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.
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.
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.
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.
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 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.
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.
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...
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.
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.
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.
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.
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.
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