Tuesday, July 17, 2012
Wednesday, July 4, 2012
Radiation Almost Over (And Tricare Sucks)
Sorry about the lack of updates again, but these last five weeks have been frustrating. I finally started radiation May 29th, and I finish this Friday. The open incision started to close up once I put Aquaphor ointment on it. It's closed all the way now but the scar's a lot wider in that area.
Radiation was uneventful the first few weeks, which is good. I've just been kind of tired. The last few weeks my skin has turned an unnatural shade of reddish-brown, and it's itchy. I'm using prescription Biafine cream on it, and some other anti-itch stuff. I started getting these weird little bumps all over my skin BEFORE I started radiation, and they've just gotten worse, especially in the radiated area. My armpit is basically an open wound right now and hurts like a bitch. I cleaned the bathroom the other night and put some shelves together and then I had terrible stabbing pains for the rest of the night. I saw the doctor the next day and she prescribed Percocet since I'm so close to finishing treatments. I just want to get it over with at this point. She gave me a referral to a dermatologist, so I have an appointment July 13th. These bumps have spread all over my stomach and sometimes show up on my arms and legs. But the armpit area is definitely the worst.
I was supposed to get my blood counts checked every two weeks during radiation, even though I had warned Dr. B that my counts have a tendency to drop. When I got my blood checked the second week, she decided to switch it to weekly (surprise surprise). The first time, I asked where I was supposed to go to get blood drawn, and they said there were two outside labs. As in, I was supposed to drive another 20 minutes to go get labwork done, when the hospital has the facilities right there. I started to throw a fit, and then they realized I could use the hospital's lab since my insurance is okay with it. I had even gone upstairs to ask Dr. C's staff if I could just get bloodwork done there, but apparently every time I see a nurse there it would count as an office visit. But it gets better... My port? The one that's physically installed under my skin and is meant to reduce having to use my only good arm for needles? According to some insurance nonsense, only the doctor who ordered it in can use it! Even the nurses there thought that was ridiculous. I'm sure if I continued to throw a fit, I could get it approved somehow, but I'm so tired of dealing with the insurance company. It's more exhausting than the treatments themselves. It also doesn't help that the surgeon said the manufacturer had lost all the information about my port when she called to get it. I'm going to call her again to see what they can do. This is my THIRD port, I probably won't even qualify for another one in the future, so I just need to hang on to this one. Everyone just needs to get their crap together.
I also started physical therapy earlier last month. Remember how I had tried to get an appointment back in OCTOBER because my arm hurt? And they said they'd call me back? Never happened. So I called them again, gave them all my information again, and was told once again that they'd get back in touch with me. A week later, still nothing. So I had to do some Googling and find a different physical therapist. But they have to specialize in lymphedema, and that's pretty rare. The one I found is 45 minutes away, but they actually pick up their phone. I originally called their closer office, but the lymphedema specialist is at their other office. They were really nice and got me an appointment right away, but then I had to deal with Tricare. I was able to renew my referral from October in the system, but the first physical therapist said they wouldn't take a referral that old, so I had the surgeon write me a new one, but she didn't actually write lymphedema on the referral, so that wasn't going to work. She also didn't think I have lymphedema. Oh ok, because I was told by a different doctor I did? Dr. C ended up writing me the same exact referral he'd written back in October so there wouldn't be an issue. I called Tricare to change the provider on the referral, but when I gave them the address, I realized afterward that it wasn't the right provider. There's another physical therapist at the same address apparently. I called the PT place back and asked if they went under that name and they said no. So I had to call Tricare again to change it. But this provider was not showing up at all in their system, even though the other office does. So I called the PT place again, and THEY called Tricare. They finally figured out that they only bill out of the one office. Ok, no problem, I called Tricare AGAIN. However, this place is listed as "Physical Rehabilitation" and not "Physical Therapy" so they told me they couldn't change the provider because it wasn't for the same service as the original referral. I had to call the PT place again and tell them, but they didn't believe this nonsense. So I called Tricare one last time and asked the guy what the difference is between physical rehabilitation and physical therapy, and he said "um, there is no difference?" and he was able to change the referral. Two hours later. Tricare sucks. The PT people were great though.
I finally got an appointment to go in and Marcy went over all the options for treating lymphedema. Some of them are not fun. I asked her why they even take out lymph nodes if it causes all these problems in the long run? She said that I'm better off without them, especially since some of them were cancerous. Apparently that is the first place they'd metastasize from, so it's better if they're gone. That helps a little I guess, to hear someone give me a decent explanation. She also said all her patients come in with the same story, that the surgeon or whoever insists they don't have lymphedema even when it's obvious they do. I have slight swelling, but it's the shooting and stabbing pains all up and down my arm that bother me the most. The treatment includes massages, compression garments, and/or bandaging. The bandaging would have involved wrapping my arm everyday for like 3 to 6 weeks, and having to drive to her office everyday to get it re-wrapped. The bandages can't get wet and don't really allow your arm to move, and they're usually from your hand up past your elbow. That wasn't definitely something I didn't want to do, especially if my case is so mild. The only way you can tell I have lymphedema is the slight swelling in my hand, and that's only if it's next to my other hand for comparison. She said that's fine. If it gets worse later, I can always do it then. Instead I came in for arm massages three days a week for about two weeks, to try to get the fluid flowing from my arm to the rest of my body. And she showed me some stretches and exercises that should help. These are the only appointments I've liked since I'm actively doing something to improve stuff instead of just being pumped up with meds or zapped with radiation. I go back again next Monday for one last appointment. I haven't been doing the exercises since my armpit boiled over since it's just severe pain all the time now, but I'm sure she'll understand, especially once she sees it. She took measurements before she started the massages and did it again for the compression sleeve and nothing changed. At least it's not getting worse. She ordered me a custom Elvarex sleeve and gauntlet and said I should wear it most of the time. Of course, getting that ordered with Tricare was yet another issue. I had to call Tricare and give them the billing code to make sure they'd cover it. They should cover two a year (and they're listed as compression "garments", not compression "sleeves" since Tricare is super anal about wording). It's supposed to be shipped to my house this week.
I had an appointment with the gynecologist earlier last month too. I wanted to get an IUD put in since I can't use any kind of hormonal birth control. The creepy male doctor examined me and then we went to his office to discuss it. He said he doesn't feel comfortable putting one in and that I'd be at risk for infection because of the aplastic anemia. I bet he has no clue what aplastic anemia even is. My white counts have been fine. If anything, I'd be at risk for other complications and then bleeding to death. He probably just believes women shouldn't have rights to their own bodies, especially since I'm a military wife. I'm supposed to just sit at home and pop out babies all day! However, he did give me a referral to another doctor for a second opinion. So I thought that was nice of him. I ended up switching the provider on that referral too though. I wanted to go to a place with more options just in case they said no too. I had that appointment yesterday. The doctor said he had no problem giving me an IUD and went over all the information with me. And then he was like "But here's the thing...". More Tricare crap! Tricare pays for IUDs but doesn't pay the full amount, so if the doctor's office orders one for a Tricare patient, they're losing money. And there's no way they can just charge the patient for the difference. He gave me a rough estimate of $700-800. BUT if I get it done at the base clinic, there's no problem. So he gave me a prescription for the IUD and told me to take it to the clinic and see if they could do ANYTHING at all about this situation. He said if I could get ahold of one, he'd put it in for me. So I left and took the prescription to the base pharmacy (high hopes). I explained the whole mess to them and they took down my information so they could call me later. They actually did call later and said there was no way they could give me one, and they'd even called Rite-Aid to ask them. They even asked the base doctor who saw me if there's anyway he'd put one in since I had a second opinion, and he still refused. So I have absolutely no way of getting an IUD. At least not anywhere around here. Maybe I'd have better luck at a Planned Parenthood, or in another state? I'm just pissed about the whole situation. So now I'm looking into my options for a permanent procedure (which hopefully will cost Tricare even MORE money because they're jerks). There's something called "Essure" which involves putting coils in your tubes and letting the scar tissue build up around them until those pesky eggs can no longer escape. Finding a doctor who does that AND takes Tricare is not easy. I have to check names and numbers on the Essure website, and then check those names on HealthNet, but none of the numbers match up. The gynecologist I went to yesterday said the earliest I could get in for a consultation would be August. I called another place that said they take "Tricare North and Tricare Standard" but didn't know what "Tricare Prime" was. Holy crap. Another place wouldn't even pick up. Finally I got through at a different doctor, and the receptionist was actually nice, even when my phone battery died in the middle of taking down my information. I have an appointment for a consultation July 19th, and she said they usually schedule the procedure within a couple weeks if the consult goes well. AND it's a female doctor finally. Now I just need to get yet another referral for this doctor. But I see Dr. C tomorrow so I'm sure he'll write me one.
I had a MUGA heart scan last week, and the tech told me the number looked fine. But Dr. C called Kyle the other day to tell him the activity seemed a little low and that he might not give me the Herceptin tomorrow. I've tried changing my primary phone number twice at his office, but Kyle's number still keeps showing up, and the receptionists don't always seem to know what they're doing. Then again, they also had me in their system as male for 6 months so...
I finally switched my phone carrier. I now get 3.5G in my house, but just having any kind of signal is amazing. I can actually make all these phone calls now to yell at people without having the calls drop. Of course, Tmobile tried to charge Ron $200 instead of $100 for the early termination fee, so I used my new awesome service to call and yell at them too. We're going down to visit Ron in his new house in Florida the first week of August. It'll mostly be dogsitting Benjamin, but it'll be a much needed vacation. Dr. B said it's okay to go in saltwater and private pools, so I'll be able to enjoy his fancy inground pool. But I'll just have to wear lots of sunblock. For the rest of my life.
Radiation was uneventful the first few weeks, which is good. I've just been kind of tired. The last few weeks my skin has turned an unnatural shade of reddish-brown, and it's itchy. I'm using prescription Biafine cream on it, and some other anti-itch stuff. I started getting these weird little bumps all over my skin BEFORE I started radiation, and they've just gotten worse, especially in the radiated area. My armpit is basically an open wound right now and hurts like a bitch. I cleaned the bathroom the other night and put some shelves together and then I had terrible stabbing pains for the rest of the night. I saw the doctor the next day and she prescribed Percocet since I'm so close to finishing treatments. I just want to get it over with at this point. She gave me a referral to a dermatologist, so I have an appointment July 13th. These bumps have spread all over my stomach and sometimes show up on my arms and legs. But the armpit area is definitely the worst.
I was supposed to get my blood counts checked every two weeks during radiation, even though I had warned Dr. B that my counts have a tendency to drop. When I got my blood checked the second week, she decided to switch it to weekly (surprise surprise). The first time, I asked where I was supposed to go to get blood drawn, and they said there were two outside labs. As in, I was supposed to drive another 20 minutes to go get labwork done, when the hospital has the facilities right there. I started to throw a fit, and then they realized I could use the hospital's lab since my insurance is okay with it. I had even gone upstairs to ask Dr. C's staff if I could just get bloodwork done there, but apparently every time I see a nurse there it would count as an office visit. But it gets better... My port? The one that's physically installed under my skin and is meant to reduce having to use my only good arm for needles? According to some insurance nonsense, only the doctor who ordered it in can use it! Even the nurses there thought that was ridiculous. I'm sure if I continued to throw a fit, I could get it approved somehow, but I'm so tired of dealing with the insurance company. It's more exhausting than the treatments themselves. It also doesn't help that the surgeon said the manufacturer had lost all the information about my port when she called to get it. I'm going to call her again to see what they can do. This is my THIRD port, I probably won't even qualify for another one in the future, so I just need to hang on to this one. Everyone just needs to get their crap together.
I also started physical therapy earlier last month. Remember how I had tried to get an appointment back in OCTOBER because my arm hurt? And they said they'd call me back? Never happened. So I called them again, gave them all my information again, and was told once again that they'd get back in touch with me. A week later, still nothing. So I had to do some Googling and find a different physical therapist. But they have to specialize in lymphedema, and that's pretty rare. The one I found is 45 minutes away, but they actually pick up their phone. I originally called their closer office, but the lymphedema specialist is at their other office. They were really nice and got me an appointment right away, but then I had to deal with Tricare. I was able to renew my referral from October in the system, but the first physical therapist said they wouldn't take a referral that old, so I had the surgeon write me a new one, but she didn't actually write lymphedema on the referral, so that wasn't going to work. She also didn't think I have lymphedema. Oh ok, because I was told by a different doctor I did? Dr. C ended up writing me the same exact referral he'd written back in October so there wouldn't be an issue. I called Tricare to change the provider on the referral, but when I gave them the address, I realized afterward that it wasn't the right provider. There's another physical therapist at the same address apparently. I called the PT place back and asked if they went under that name and they said no. So I had to call Tricare again to change it. But this provider was not showing up at all in their system, even though the other office does. So I called the PT place again, and THEY called Tricare. They finally figured out that they only bill out of the one office. Ok, no problem, I called Tricare AGAIN. However, this place is listed as "Physical Rehabilitation" and not "Physical Therapy" so they told me they couldn't change the provider because it wasn't for the same service as the original referral. I had to call the PT place again and tell them, but they didn't believe this nonsense. So I called Tricare one last time and asked the guy what the difference is between physical rehabilitation and physical therapy, and he said "um, there is no difference?" and he was able to change the referral. Two hours later. Tricare sucks. The PT people were great though.
I finally got an appointment to go in and Marcy went over all the options for treating lymphedema. Some of them are not fun. I asked her why they even take out lymph nodes if it causes all these problems in the long run? She said that I'm better off without them, especially since some of them were cancerous. Apparently that is the first place they'd metastasize from, so it's better if they're gone. That helps a little I guess, to hear someone give me a decent explanation. She also said all her patients come in with the same story, that the surgeon or whoever insists they don't have lymphedema even when it's obvious they do. I have slight swelling, but it's the shooting and stabbing pains all up and down my arm that bother me the most. The treatment includes massages, compression garments, and/or bandaging. The bandaging would have involved wrapping my arm everyday for like 3 to 6 weeks, and having to drive to her office everyday to get it re-wrapped. The bandages can't get wet and don't really allow your arm to move, and they're usually from your hand up past your elbow. That wasn't definitely something I didn't want to do, especially if my case is so mild. The only way you can tell I have lymphedema is the slight swelling in my hand, and that's only if it's next to my other hand for comparison. She said that's fine. If it gets worse later, I can always do it then. Instead I came in for arm massages three days a week for about two weeks, to try to get the fluid flowing from my arm to the rest of my body. And she showed me some stretches and exercises that should help. These are the only appointments I've liked since I'm actively doing something to improve stuff instead of just being pumped up with meds or zapped with radiation. I go back again next Monday for one last appointment. I haven't been doing the exercises since my armpit boiled over since it's just severe pain all the time now, but I'm sure she'll understand, especially once she sees it. She took measurements before she started the massages and did it again for the compression sleeve and nothing changed. At least it's not getting worse. She ordered me a custom Elvarex sleeve and gauntlet and said I should wear it most of the time. Of course, getting that ordered with Tricare was yet another issue. I had to call Tricare and give them the billing code to make sure they'd cover it. They should cover two a year (and they're listed as compression "garments", not compression "sleeves" since Tricare is super anal about wording). It's supposed to be shipped to my house this week.
I had an appointment with the gynecologist earlier last month too. I wanted to get an IUD put in since I can't use any kind of hormonal birth control. The creepy male doctor examined me and then we went to his office to discuss it. He said he doesn't feel comfortable putting one in and that I'd be at risk for infection because of the aplastic anemia. I bet he has no clue what aplastic anemia even is. My white counts have been fine. If anything, I'd be at risk for other complications and then bleeding to death. He probably just believes women shouldn't have rights to their own bodies, especially since I'm a military wife. I'm supposed to just sit at home and pop out babies all day! However, he did give me a referral to another doctor for a second opinion. So I thought that was nice of him. I ended up switching the provider on that referral too though. I wanted to go to a place with more options just in case they said no too. I had that appointment yesterday. The doctor said he had no problem giving me an IUD and went over all the information with me. And then he was like "But here's the thing...". More Tricare crap! Tricare pays for IUDs but doesn't pay the full amount, so if the doctor's office orders one for a Tricare patient, they're losing money. And there's no way they can just charge the patient for the difference. He gave me a rough estimate of $700-800. BUT if I get it done at the base clinic, there's no problem. So he gave me a prescription for the IUD and told me to take it to the clinic and see if they could do ANYTHING at all about this situation. He said if I could get ahold of one, he'd put it in for me. So I left and took the prescription to the base pharmacy (high hopes). I explained the whole mess to them and they took down my information so they could call me later. They actually did call later and said there was no way they could give me one, and they'd even called Rite-Aid to ask them. They even asked the base doctor who saw me if there's anyway he'd put one in since I had a second opinion, and he still refused. So I have absolutely no way of getting an IUD. At least not anywhere around here. Maybe I'd have better luck at a Planned Parenthood, or in another state? I'm just pissed about the whole situation. So now I'm looking into my options for a permanent procedure (which hopefully will cost Tricare even MORE money because they're jerks). There's something called "Essure" which involves putting coils in your tubes and letting the scar tissue build up around them until those pesky eggs can no longer escape. Finding a doctor who does that AND takes Tricare is not easy. I have to check names and numbers on the Essure website, and then check those names on HealthNet, but none of the numbers match up. The gynecologist I went to yesterday said the earliest I could get in for a consultation would be August. I called another place that said they take "Tricare North and Tricare Standard" but didn't know what "Tricare Prime" was. Holy crap. Another place wouldn't even pick up. Finally I got through at a different doctor, and the receptionist was actually nice, even when my phone battery died in the middle of taking down my information. I have an appointment for a consultation July 19th, and she said they usually schedule the procedure within a couple weeks if the consult goes well. AND it's a female doctor finally. Now I just need to get yet another referral for this doctor. But I see Dr. C tomorrow so I'm sure he'll write me one.
I had a MUGA heart scan last week, and the tech told me the number looked fine. But Dr. C called Kyle the other day to tell him the activity seemed a little low and that he might not give me the Herceptin tomorrow. I've tried changing my primary phone number twice at his office, but Kyle's number still keeps showing up, and the receptionists don't always seem to know what they're doing. Then again, they also had me in their system as male for 6 months so...
I finally switched my phone carrier. I now get 3.5G in my house, but just having any kind of signal is amazing. I can actually make all these phone calls now to yell at people without having the calls drop. Of course, Tmobile tried to charge Ron $200 instead of $100 for the early termination fee, so I used my new awesome service to call and yell at them too. We're going down to visit Ron in his new house in Florida the first week of August. It'll mostly be dogsitting Benjamin, but it'll be a much needed vacation. Dr. B said it's okay to go in saltwater and private pools, so I'll be able to enjoy his fancy inground pool. But I'll just have to wear lots of sunblock. For the rest of my life.
Tuesday, May 22, 2012
Delayed Radiation
Slacking off on the updates again. But most of you probably saw me last week in Charleston so I'm obviously still alive. Our vacation was barely a vacation but I got all my errands done and I finally graduated from college (with honors thanks to my 3.875 GPA, which I'm allowed to brag about).
I had a job interview the day after we got back, but I don't think I got the job. The guy I was supposed to see had some kind of emergency, but the other guy I talked to said my technical skills weren't where he wanted them, but that my attitude was right. Oh well, it's probably better to wait until after radiation to work anyway.
I went to the emergency room later that day too. This incision problem has just gotten worse. The doctor there said it looked like an ulcer, but again, not infected. They gave me some antibiotics anyway. And some non-stick bandages that won't irritate it more.
I saw the radiation oncologist Friday to take some "pictures". I got Dr. B to look at my incision first since I was supposed to start radiation yesterday (Monday). She gave me some Silvadene cream to put on it until I saw my surgeon. I have an appointment to see Dr. B again May 29th, and will probably start radiation then instead. The "pictures" that they kept talking about involved me pretending to get radiated, lying half-naked on a tiny wooden board five feet in the air with this huge scary machine shooting laser beams across my chest. The elaborate tree picture on the ceiling was a nice touch and all but the machine blocks it completely, and instead I had to stare at a reflection of my flat, scarred chest for 30 minutes. Thankfully when I actually get radiated, it won't take so long, because my arms were starting to go numb.
I finally saw Dr. K Monday. That gross red gooey spot on my incision? Just my skin coming apart. The scar tissue is so thin and weak, it's just splitting open. Apparently the moisturizing cream I've been using wasn't enough, so she told me to go buy ointment and make sure it stays moist. All the time. She said the other side might do the same thing. Great. But I can go ahead and start radiation because there's nothing I can really do about it. The radiation might make it better or worse, so I guess we'll see.
I'm getting the Herceptin again tomorrow. And I'll find out Thursday about starting physical therapy.
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.
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.
Tuesday, April 3, 2012
Radiation Bummer
We saw Dr. B today. The nurse who took my vital signs asked what my real age was, because she didn't believe I was only 22. At least someone thought I was older and not younger this time, especially with this new flat chest.
I was really hoping with the reduction in the tumor size from chemo and the clean margins and the low grade that I would be able to skip radiation. But since the cancer was still there after chemo, there could be other cells in that area. And since chemo got delayed/reduced so much because of all the side effects, even Dr. C recommends I get radiation. So Dr. B has a definite decision now, and I'm going to get 28 treatments or 5 and a half weeks.
She said she's not going to radiate the lymph nodes in my armpit, since they were all removed, but she's going to do the whole breast area and the lymph nodes above my collarbone. Some possible side effects: skin thickening, a permanently darkened/reddened area, greater propensity to rib fractures, some minimal lung damage, and, rarely, secondary cancers. And the hair might not grow back in that area, which is the only good thing I see about all this. With the costochondritis at least, she said that the patients who develop it during treatment usually get better after treatments end, and that if it is an inflammatory issue, the radiation might actually make it better by killing off the white blood cells in that area.
She says if I don't get radiation I might not even be around later to worry about a local recurrence. And if all of my doctors are recommending I do it, surely it's for my benefit. We're waiting until after my graduation at least, and I'll start Monday, May 21st, after we get back.
I'm really bummed out, but this is just cancer being crappy as usual.
I was really hoping with the reduction in the tumor size from chemo and the clean margins and the low grade that I would be able to skip radiation. But since the cancer was still there after chemo, there could be other cells in that area. And since chemo got delayed/reduced so much because of all the side effects, even Dr. C recommends I get radiation. So Dr. B has a definite decision now, and I'm going to get 28 treatments or 5 and a half weeks.
She said she's not going to radiate the lymph nodes in my armpit, since they were all removed, but she's going to do the whole breast area and the lymph nodes above my collarbone. Some possible side effects: skin thickening, a permanently darkened/reddened area, greater propensity to rib fractures, some minimal lung damage, and, rarely, secondary cancers. And the hair might not grow back in that area, which is the only good thing I see about all this. With the costochondritis at least, she said that the patients who develop it during treatment usually get better after treatments end, and that if it is an inflammatory issue, the radiation might actually make it better by killing off the white blood cells in that area.
She says if I don't get radiation I might not even be around later to worry about a local recurrence. And if all of my doctors are recommending I do it, surely it's for my benefit. We're waiting until after my graduation at least, and I'll start Monday, May 21st, after we get back.
I'm really bummed out, but this is just cancer being crappy as usual.
Monday, April 2, 2012
Flat-Chested
It's almost been two weeks since my surgery, and I'm feeling a lot better. I haven't needed any painkillers the past few days (even for the chest pain!). The surgery went well and I got out of the hospital Wednesday afternoon. There was some strange swelling on the left side, so I saw the doctor Friday to get it checked out, but they said it was just the tubing inside from the drain (gross). I saw the doctor again Wednesday to get the two drains taken out. Everything's kind of numb in my chest area, and I didn't have those terrible shooting pains from the lymph node surgery this time, so the drains were much easier to manage, but I was still glad to have them out. I ditched the uncomfortable hospital/surgical bra as soon as I could and I've been wearing the As Seen On TV Genie Bra because they had an extra-small that actually fits. It's almost just as hard to find bras now. I'm somewhere between the little girls and the juniors, but most of them come built-in pockets with padding. Our society's obsession with big boobs and oversexualization of pre-teens are working in my favor. Walmart even has $5 "water pads" next to the Buty Pant butt-enhancing panties. While I opted to skip the padded underwear, those cheap bra pads are good enough to make me look a little less like a flat-chested twelve year old.
I saw Dr. K today for a follow-up. She ripped the steri-strips off both sides, but thankfully I couldn't really feel it. That swelling never really went away, so she just sucked it out with a syringe. Again, happily still numb! It's definitely flatter now, but I forgot to ask about the other swollen part at the top. Hopefully that's not just leftover skin... Everything else looks really good, completely flat and the incisions are very thin, even though each one goes from the middle of my chest up into my armpit. I think she did a great job.
She gave me a copy of the pathology report, and said everything was fine with the surgery. The chemo obviously worked because the tumor went down from 2 cm to 0.6 cm. When I got home and looked over the report, I realized I don't know what any of it means, but Wikipedia's super helpful. Overall, I had a grade of 1 which is the lowest (and best). Tubular differentiation had a score of 3, which isn't good, but nuclear pleomorphism was only 1 and mitotic count was only 1. Nothing was found on the left side, except that fibroadenoma. While Kyle jokingly said it was a waste of a good boob, I feel better knowing I have almost no breast tissue left to form new cancer cells. Plus, they're a pair anyway; I'd rather be flat-chested on both sides than lopsided.
Dr. K also went over some massages for my arm when I asked for a new referral for a lymphedema physical therapist. I mentioned the arm pain to the oncologist a few months ago, and they said it was lymphedema, which is why I thought it was a lymphedema... And my right hand is noticeably swollen compared to my left. She said lymphedema doesn't hurt though, it's just the swelling. She thinks it's just the muscles in my arm and I must've overused or underused that arm after the first surgery. She said to keep it elevated above my heart whenever I have a chance, and showed me the massages for both the lymphedema and for my muscle aches. If I'm still having issues in two weeks and want to see a physical therapist, she said to call. Otherwise, I'll see her in six weeks to make sure everything's doing okay. She also asked when I wanted to get the port out, but considering this is my THIRD one now, I'm going to hold onto it for as long as possible. Once I'm done with treatments with the oncologist, it'll need to be flushed every three months to keep it functional. She said they could take it right out in their office instead of dealing with all the hospital stuff. Very different from the last two ports...
I have an appointment with Dr. B from radiation oncology tomorrow for another consultation. My chest pain finally went away (after seven weeks), but I really don't want to get radiation if it's going to aggravate it in the future. I guess we'll see what she says tomorrow.
As for the official weight for my boobs: the right one was 439 grams and the left was 427 grams. Less than a pound each! I was expecting heavier.
I saw Dr. K today for a follow-up. She ripped the steri-strips off both sides, but thankfully I couldn't really feel it. That swelling never really went away, so she just sucked it out with a syringe. Again, happily still numb! It's definitely flatter now, but I forgot to ask about the other swollen part at the top. Hopefully that's not just leftover skin... Everything else looks really good, completely flat and the incisions are very thin, even though each one goes from the middle of my chest up into my armpit. I think she did a great job.
She gave me a copy of the pathology report, and said everything was fine with the surgery. The chemo obviously worked because the tumor went down from 2 cm to 0.6 cm. When I got home and looked over the report, I realized I don't know what any of it means, but Wikipedia's super helpful. Overall, I had a grade of 1 which is the lowest (and best). Tubular differentiation had a score of 3, which isn't good, but nuclear pleomorphism was only 1 and mitotic count was only 1. Nothing was found on the left side, except that fibroadenoma. While Kyle jokingly said it was a waste of a good boob, I feel better knowing I have almost no breast tissue left to form new cancer cells. Plus, they're a pair anyway; I'd rather be flat-chested on both sides than lopsided.
Dr. K also went over some massages for my arm when I asked for a new referral for a lymphedema physical therapist. I mentioned the arm pain to the oncologist a few months ago, and they said it was lymphedema, which is why I thought it was a lymphedema... And my right hand is noticeably swollen compared to my left. She said lymphedema doesn't hurt though, it's just the swelling. She thinks it's just the muscles in my arm and I must've overused or underused that arm after the first surgery. She said to keep it elevated above my heart whenever I have a chance, and showed me the massages for both the lymphedema and for my muscle aches. If I'm still having issues in two weeks and want to see a physical therapist, she said to call. Otherwise, I'll see her in six weeks to make sure everything's doing okay. She also asked when I wanted to get the port out, but considering this is my THIRD one now, I'm going to hold onto it for as long as possible. Once I'm done with treatments with the oncologist, it'll need to be flushed every three months to keep it functional. She said they could take it right out in their office instead of dealing with all the hospital stuff. Very different from the last two ports...
I have an appointment with Dr. B from radiation oncology tomorrow for another consultation. My chest pain finally went away (after seven weeks), but I really don't want to get radiation if it's going to aggravate it in the future. I guess we'll see what she says tomorrow.
As for the official weight for my boobs: the right one was 439 grams and the left was 427 grams. Less than a pound each! I was expecting heavier.
Wednesday, March 14, 2012
Skipped Herceptin
Now that I only have regular appointments every three weeks, I'm probably going to be lazy and update a lot less. I had a MUGA scan last week, but Dr. C called the next day to tell me the number was lower than he wanted, so I didn't get the Herceptin today. It was only 52, and my first two were 65 and 55. He said it's still normal, but I'm at a certain threshold where they want to wait and see if it gets better before giving me any more Herceptin. I have another MUGA scan scheduled for April 4th and see the doctor again April 11th. I asked for a copy of my counts as I was leaving and apparently they still had me in the system as male. My hemoglobin was 8.7, my platelets went down to 112, but my white counts are good. Hopefully that won't mess up my surgery date next Tuesday. I'm also supposed to start the Tamoxifen when I get home from the hospital. The hot flashes stopped a few weeks ago thankfully, but this medication will probably start them up again. And I'm supposed to be on it for the next five years. Oh what fun. Besides the typical menopausal symptoms, it also has rare side effects of blood clots and uterine cancer (just can't win).
My chest still hurts (four weeks now?). He said it's a good thing that it hurts when I push on my ribs because it sounds like a cartilage issue and not something to order a bone scan for. He even said it sounded like costochondritis, which I thought I had told him before? But either way, at least he's familiar with it. I realized I've been dealing with this on and off for almost seven years now. The only thing I can do for it is pop ibuprofen and slap a heating pad on my chest. I just hope it gets better before surgery next week.
I saw Dr. K for a pre-op appointment last Thursday for the list of questions I've been making. She said the surgery might make my chest pain worse because it'll feel tight, but that it's fine to keep taking the ibuprofen, as long as I don't drink anything the night before surgery. And yes that crazy thing in my chest IS a power port, that's all they use apparently. I was supposed to get a booklet and a card when I was in the hospital, but she's going to try to get me another one. I should only be in the hospital for one night and the surgery should take less than three hours. I asked her not to leave any extra skin, and she said it'll be completely flat with the scars slanted with the way the muscles underneath naturally stretch. I'll have drains again, but I won't have that terrible nerve pain since they're not messing with any more lymph nodes. She said I could drive once the drains are out and I'm not drugged up on painkillers.
I tried to make an appointment with the radiation oncologist, but they told me to call back after my surgery. Dr. K said they can start radiation two to four weeks after surgery, but that seems too soon and I don't see how my skin would have time to heal before then? We're going to SC for a week in May so they're going to have to work around that anyway. I'm more concerned about what the heck radiation is going to do to my chest in the long run, especially with this ongoing chest pain and my swollen arm. The radiation oncologist was unsure at first whether to do it or not (September and October entries). Maybe whatever they find during surgery will influence it. Either way I'm screwed.
Thursday, February 23, 2012
Done!
...with chemo at least.
No Taxol #12 this week. The numbness has stayed about the same, but he kept asking if I was having pains in my fingers, as if that was going to determine whether or not I had the last treatment. Then again, for the last 6 weeks, he kept asking if I was still able to button buttons and tie shoelaces without problems (two completely avoidable tasks) as if THAT would determine whether to continue treatments. He did acknowledge the issues I've been having typing on my phone or a keyboard for the past few weeks (much more important!).
Thankfully, he let me stop so I'm officially done with chemo! And I'm two weeks out from the last treatment, so I've been feeling much better. I even got on my exercise bike last night, since my legs were already sore (thanks to a combination of six months of not moving, some leftover Taxol side effects, and those flu-like symptoms associated with Herceptin). But after about 20 minutes, my feet went numb. So I'm really glad we didn't push those last two Taxols. Hopefully all this numbness and tingling will start to go away, along with these other crappy side effects. My skin's started cracking and peeling because it's so dry. I'm still waiting for my constantly runny/bloody nose to get better. The hair on my head's definitely grown out at least an inch, but it's mostly on the top and in the back. My forehead looks huge now because most of the hair in the front has thinned or fallen out. I still haven't shaved my armpits or my legs in weeks, which is nice and all, but my eyebrows are disappearing too, so I could use some hair growth. My chest pain mostly went away last week, but in the last few days, my shoulder starting hurting again, but this time on the left side. I've been popping ibuprofen and that seems to help.
The nurses printed off a copy of my blood counts (since I actually remembered this time), and they're slowly going back up. My hemoglobin was 9.7 and platelets went up to 127 (almost normal). But then I noticed the "Gender" on the printout says "Male". I know I don't have as many female hormones running through my body anymore and I'm about to get my boobs cut off, but seriously? They fixed it right away, but I wonder how long it's been like that and if it's affected anything...
I also called Dr. K's office last week to reschedule my surgery. It's now for Tuesday, March 20, and I have a pre-op appointment in two weeks for any last-minute questions. I really don't think it'll be that bad, since they aren't ripping out any lymph nodes this time, and especially in comparison to six months of chemo hell (most of which is a blur thankfully). I'm just ready to be done with all this.
I'm still getting the Herceptin, but now it's every three weeks, so my next appointment isn't for a while. My next MUGA heart scan is scheduled for February 6th. Speaking of never-ending appointments, we had to reschedule the one for the dogs, but Zeus hasn't been chewing on his feet lately, and instead has been getting into the trash and tearing everything up to occupy himself. Guess that's a trade-off?
And Skye's still fat.
No Taxol #12 this week. The numbness has stayed about the same, but he kept asking if I was having pains in my fingers, as if that was going to determine whether or not I had the last treatment. Then again, for the last 6 weeks, he kept asking if I was still able to button buttons and tie shoelaces without problems (two completely avoidable tasks) as if THAT would determine whether to continue treatments. He did acknowledge the issues I've been having typing on my phone or a keyboard for the past few weeks (much more important!).
Thankfully, he let me stop so I'm officially done with chemo! And I'm two weeks out from the last treatment, so I've been feeling much better. I even got on my exercise bike last night, since my legs were already sore (thanks to a combination of six months of not moving, some leftover Taxol side effects, and those flu-like symptoms associated with Herceptin). But after about 20 minutes, my feet went numb. So I'm really glad we didn't push those last two Taxols. Hopefully all this numbness and tingling will start to go away, along with these other crappy side effects. My skin's started cracking and peeling because it's so dry. I'm still waiting for my constantly runny/bloody nose to get better. The hair on my head's definitely grown out at least an inch, but it's mostly on the top and in the back. My forehead looks huge now because most of the hair in the front has thinned or fallen out. I still haven't shaved my armpits or my legs in weeks, which is nice and all, but my eyebrows are disappearing too, so I could use some hair growth. My chest pain mostly went away last week, but in the last few days, my shoulder starting hurting again, but this time on the left side. I've been popping ibuprofen and that seems to help.
The nurses printed off a copy of my blood counts (since I actually remembered this time), and they're slowly going back up. My hemoglobin was 9.7 and platelets went up to 127 (almost normal). But then I noticed the "Gender" on the printout says "Male". I know I don't have as many female hormones running through my body anymore and I'm about to get my boobs cut off, but seriously? They fixed it right away, but I wonder how long it's been like that and if it's affected anything...
I also called Dr. K's office last week to reschedule my surgery. It's now for Tuesday, March 20, and I have a pre-op appointment in two weeks for any last-minute questions. I really don't think it'll be that bad, since they aren't ripping out any lymph nodes this time, and especially in comparison to six months of chemo hell (most of which is a blur thankfully). I'm just ready to be done with all this.
I'm still getting the Herceptin, but now it's every three weeks, so my next appointment isn't for a while. My next MUGA heart scan is scheduled for February 6th. Speaking of never-ending appointments, we had to reschedule the one for the dogs, but Zeus hasn't been chewing on his feet lately, and instead has been getting into the trash and tearing everything up to occupy himself. Guess that's a trade-off?
And Skye's still fat.
Wednesday, February 15, 2012
Skipped Taxol #11
Treatments 7-10 of Taxol were pretty boring, just the usual tiredness and some numbness in my fingers. But last week sucked. I started to get some chest pains Saturday. No worries because it only hurt if I breathed or moved, not that I need to do those things on a regular basis. I popped some Tylenol and ibuprofen which is what the doctor told me to do when I had chest pain from the Neulasta shots. It helped a little, but it got a lot worse the next day, so I started taking Vicodin leftover from my surgery. Apparently Vicodin and Benadryl are two drugs that no longer help me sleep.
I called the doctor Monday, since it had only gotten worse and the Vicodin was just making me feel sick. They ordered some kind of CT scan on my chest for later that day. When we got there, the nurses asked if there were any chance I could be pregnant. Doesn't anyone watch "I Didn't Know I was Pregnant"? Even though I had a whole list of evidence of why I SHOULDN'T be pregnant, they got really worried when I said I couldn't remember the date of my last period (thanks chemo!), so worried in fact that they almost wouldn't let me do the chest scan. Really? They were more concerned about a nonexistent fetus with a chemo-induced tail than the fact that I was having severe chest pains and needed a scan to make sure I didn't have a life-threatening problem with my lungs that would have killed the fetus anyway? Good to know the medical community's priorities when it comes to women of childbearing age.
When I FINALLY convinced them that NO I'm not pregnant, they gave me an IV to insert the dye for the scan. I asked if they could use my port, but they said it had to be a "Power Port" and I had to have a card identifying it. Funny because when I asked about the three little alien bumps coming out of my skin above the port, they said it was like that so other facilities could use it too (easily identifiable). I'll ask the doctor about it next week. Instead, the nurses had to do an IV in my arm, and she so kindly told me, since the dye goes in really fast, they have to use a larger needle. Sweet. But even better when was they put the dye in later, and they warned me that it'll make me feel really warm and like I've peed my pants. "Warm" was an understatement, but it was a really strange feeling. Luckily, the scan itself only took a few minutes. They sent the results to Dr. C and sent me back out to the waiting room. Then they came back out to tell us to go home, everything was normal on the scan. Ok, but my chest still hurt?
So I toughed it out that night and the next morning. Then I had a really bad wave of nausea and dizziness and heat hit me on the way to the hospital for my appointment. That combined with the severe pain in my chest and not being able to breathe was super fun. Thankfully the doctor has some sense and wasn't going to try to give me chemo that day, but I think it was more due to the numbness in my fingers than the chest pain. But I would've flipped out if he had tried. I think my body has maxed out on chemo at this point. He has no idea what's going on with my chest pain, because everything seemed normal. I think the chest pain's just the same thing I've had multiple times before (costochondritis) and the stress of six months of chemo made it worse. I asked the doctor if it is the same problem as before, won't radiation make it worse? He said it's just a "necessary evil" and that I'll basically just have to deal with it. Then again, he's not in charge of radiation, so I'll discuss it with the radiation oncologist before they start zapping me. For now, he told me to take some ibuprofen and see if that helps. It's definitely helping more than the Vicodin did.
Besides the crappy week from the chest pain, my fingers and toes have just gotten worse. I noticed within the last week that when I start walking sometimes, both my feet will hurt and tingle a little. And when I dried my hands on a towel, I noticed my palms really tickled, but not in a good way. My fingertips feel really dry and puffy and it's way more noticeable all the time now instead of just when I use them. So I might be done with chemo. We'll see next week if the numbness is any better and if I can get the last treatment. I asked if the chemo'll be any less effective by stopping early, but since I've had 10 out of 12 treatments, Dr. C says it should be fine at this point. Plus, I'm kind of sick of chemo. I just got the Herceptin yesterday. We were out of there within 45 minutes of seeing the doctor. Good thing, because having an appointment after 9 means they run out of seats. Even though the Herceptin alone should be nothing compared to chemo, my lower legs and the top of my feet really hurt last night, so I guess muscle aches are still a problem.
I also told the doctor I think I'm having hot flashes, and he said it's likely the chemo's put me in menopause and my ovaries have stopped functioning (even though my mother didn't believe that we both could be having hot flashes). That would explain the missing period. I noticed a few weeks ago I'd randomly get really hot at night, but I thought it was just because our second-floor bedroom is a furnace. But then it started happening in the middle of the day too. For someone who's usually cold ALL THE TIME, random waves of heat are kind of alarming, and then afterward, I'm even colder.
On my To Do list: I'll need to have another MUGA scan to make sure the Herceptin isn't ruining my heart, call Dr. K to reschedule my surgery to an earlier date, call Tricare to fix their stuff as usual, pass the first round of tests coming up in my freshman-level classes, and buy some 100% cotton sheets.
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.
Tuesday, January 3, 2012
Not So Boring Update
I got Taxol #5 today. I'm supposed to have 7 left, but since my fingers are getting worse, I might not be able to finish all 12 treatments. If they're still worse next week, Dr. C says we're going to stop the Taxol altogether and switch the Herceptin to every 3 weeks instead of weekly. This would also bump up my potential surgery date to February instead of the end of March. I have an appointment with the surgeon January 19th, but they might call me if something sooner opens up. AND this would mean I could potentially finish radiation before graduation (May 12th) instead of trying to schedule around it. I really wouldn't mind finishing chemo "early" because it generally makes me feel like crap, but I also need to make sure I do as much as I can this time to prevent this from happening again. Dr. C says it's about balance, and the numbness in my fingers might never get better so we don't want it to get any worse. So we'll see what happens next week.
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).
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