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.
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