Finally got some chemo yesterday, the second round of Cytoxan, but the first time with just it alone. I got there at 8:00 (Dr. C caught me in the elevator on his way up from the cafeteria), and didn't leave until 12:45. They even checked my blood counts before the other patients because they were worried I'd need a transfusion (and be there even longer...). My counts were decent though, my hemoglobin went up to 9, but my platelets were only 78. My blood pressure's still low (86/50), which means I get it taken twice by two different nurses every time.
Getting the chemo itself was uneventful. I even managed to get some homework done. I started getting a slight headache near the end, which they had mentioned could happen if they infuse it too fast, but it went away pretty quickly. As soon as I left the hospital (and was mopping up the blood oozing out of their tiny bandaids, remind me to bring my own next time), I started feeling really nauseous and tired. I made it home and took a nap. Hopefully yesterday was the worst of it? I couldn't sleep at all last night either, and the FIVE times I got up to pee, I was really dizzy, which I'll let the nurses know today when I go for my shot. But I'm feeling better today, I just hope it doesn't get worse later in the week like with the Adriamycin.
If there's anything else I'm supposed to update about, I definitely can't remember right now, thanks chemobrain!
Tuesday, October 25, 2011
Monday, October 17, 2011
Just Kidding?
No chemo today (again). I was supposed to start Cytoxan today, which I have three more treatments left (and then the Taxol). But my hemoglobin was only 7 something and my platelets were 50. Dr. C said he'd do a transfusion if it hits 6. But this is definitely contributing to my extreme tiredness all the time. My blood pressure's still abnormally low at 86/50. But this puts my schedule for vacation time right on track. I'll go in for chemo next Monday and then go back November 7th before I leave for Portland.
The genetics counselor called this morning too. Apparently they only got the test results for one test (which was negative), and we're still waiting for the second one. So I could still be positive the p53 gene mutation. Great.. We'll find out next week.
The genetics counselor called this morning too. Apparently they only got the test results for one test (which was negative), and we're still waiting for the second one. So I could still be positive the p53 gene mutation. Great.. We'll find out next week.
Friday, October 14, 2011
Still No Mutations
The genetics counselor called me this morning to tell me the results of the P53 genetic test they did: No mutations found! Which is good, but she's going to see if there are any other tests we can do. It'd be nice to have an answer, just not a bad one.
I also got a scary bill from the doctor's office today. From August 8th (two months to process?). I called up Tricare and the woman was so nice, she checked all the other claims to make sure they went through properly and even looked into my wig reimbursement. Apparently they denied the claim for a lot of reasons, but someone over there messed up in the filing process. And the receipt I sent had gotten folded over when they imaged it, so it said $45 instead of $450! She told me everything I needed to do to make sure it's taken care of, and now I need to resend everything. She even informed me of how many referral visits I have for oncology and transferred me to the Referral people to see if I could get more. Unfortunately, that's when my phone decided to cut out. So I called Tmobile after that. They can only offer me two new phones for my warranty exchange now since my current one is almost a year old, so I'm going to research my options. It's really frustrating trying to make all these important phone calls when I don't get service inside the house and the wifi-calling on my phone is messed up.
It's technically my Fall Break until Wednesday. My midterm grades were pretty good considering I haven't been to a single class and how chemo makes my brain feel fuzzy. I'll either be getting chemo this Monday or next Monday depending on how my counts are doing and/or if I can talk the doctor into working around my vacation schedule. We're leaving Friday, October 29th to go to Myrtle Beach/Charleston, and won't be back until November 5th or 6th. But then I'm supposed to leave November 8th for Grace Hopper, so we might have to work chemo into Monday, Nov. 7th instead. I might not be going anywhere if I don't hear back from the physical therapist first. My hand's still swollen and hurts and doing things like folding clothes or scrubbing the bathtub does NOT help at all. Hopefully they can get me in for an appointment as soon as possible.
My cousin Lindsey's coming up for the weekend and is going to help me landscape our "back yard" for the dogs. It's all dirt and dead plants and poop right now so it definitely needs some work. I also went ahead and ordered the FURminator after seeing some pictures and videos of the magic it can do. It should be arriving very soon. I'm so tired of eating dog hair with every meal.
I also got a scary bill from the doctor's office today. From August 8th (two months to process?). I called up Tricare and the woman was so nice, she checked all the other claims to make sure they went through properly and even looked into my wig reimbursement. Apparently they denied the claim for a lot of reasons, but someone over there messed up in the filing process. And the receipt I sent had gotten folded over when they imaged it, so it said $45 instead of $450! She told me everything I needed to do to make sure it's taken care of, and now I need to resend everything. She even informed me of how many referral visits I have for oncology and transferred me to the Referral people to see if I could get more. Unfortunately, that's when my phone decided to cut out. So I called Tmobile after that. They can only offer me two new phones for my warranty exchange now since my current one is almost a year old, so I'm going to research my options. It's really frustrating trying to make all these important phone calls when I don't get service inside the house and the wifi-calling on my phone is messed up.
It's technically my Fall Break until Wednesday. My midterm grades were pretty good considering I haven't been to a single class and how chemo makes my brain feel fuzzy. I'll either be getting chemo this Monday or next Monday depending on how my counts are doing and/or if I can talk the doctor into working around my vacation schedule. We're leaving Friday, October 29th to go to Myrtle Beach/Charleston, and won't be back until November 5th or 6th. But then I'm supposed to leave November 8th for Grace Hopper, so we might have to work chemo into Monday, Nov. 7th instead. I might not be going anywhere if I don't hear back from the physical therapist first. My hand's still swollen and hurts and doing things like folding clothes or scrubbing the bathtub does NOT help at all. Hopefully they can get me in for an appointment as soon as possible.
My cousin Lindsey's coming up for the weekend and is going to help me landscape our "back yard" for the dogs. It's all dirt and dead plants and poop right now so it definitely needs some work. I also went ahead and ordered the FURminator after seeing some pictures and videos of the magic it can do. It should be arriving very soon. I'm so tired of eating dog hair with every meal.
Wednesday, October 12, 2011
Plastic Surgeon
I saw a plastic surgeon yesterday (now conveniently located at Dr. K's office). All these older women were there waiting, so excited about having their new boobs installed. It kind of creeped me out. And I've kind of already decided to not have reconstruction done the same time as my mastectomy, especially since I'm only two months into chemo and I have another four to go. I don't want to deal with anything "extra" by the time I get to surgery. Not to mention the five weeks of radiation to follow. But I figured it wouldn't hurt to see the plastic surgeon to see what my options are.
Since we're planning to do radiation, he said I'm not a candidate for an implant, at least not on the right side. I don't really like the idea of having a foreign object in my body for the rest of my life anyway, especially if it can cause extra complications. The tissue on that side won't heal very well after radiation, so it can't be expanded for an implant. He then squeezed the fat on my stomach (awesome), but said even though there's "some" fat there (thanks), it wouldn't be enough to do both boobs. So they start salvaging other parts of your body. In my case, he said he could use tissue from my back. Four large incisions in three different areas of my body all at once?? No thanks! Plus they'd be taking muscle from my back too. I can't really see the justification of sacrificing (any) muscle on my body for a boob. I'm already so weak from the chemo and the lymphedema in my dominant arm, I'd rather not make it any worse in the long run. Plus I googled some pictures of the stomach scar (pretty sure it's the DIEP flap procedure he was talking about), and it does not look like a fun recovery time.
I mentioned that if I did get reconstruction, I wouldn't want the same size. Whenever I say that, people always seem to assume I want bigger boobs for some reason. I'm five feet tall, I'd like, for the first time in my life, to have boobs that are appropriately sized for my body. So smaller. Much smaller. It's a nightmare finding bras to fit, and that 32 band size? Pretty sure it should be a 30 but they don't make those. I don't think the doctor took me seriously though, because he kept saying "for the same size" when he was mentioning all the parts he'd have to scrape together from the rest of me.
He said insurance should cover reconstruction, no matter when I have it done, so that shouldn't be an issue. However, for the best looking results, I should do it the same time as the mastectomy. After another four months of chemo, I can't imagine I'm going to feel well enough to change my mind about it. Plus there's that more important question of why get reconstruction at all? Maybe so clothes fit a little better, or so people don't mistake me for a 10-year-old year girl, or worse, a 10-year-old boy. My husband said he just wants me alive either way. Plus, I'd never be able to feel them. The numbness in my arm still feels weird, and the mastectomy scars should be numb too, I don't want extra tissue hanging off me that I can't even feel. Why pretend to make it seem normal?
He also kept mentioning how important it is to get back to a good "quality of life". Maybe I'm just a little dazed from chemo brain, but the way he kept saying it made it seem like I would never have a decent quality of life if I didn't get new boobs. If anything, not having extra, unnecessary surgery right now will give me a better quality of life, considering I'll be able to return to normal activities much sooner. I asked if I could just wait until my stomach inevitably gets fatter and THEN have them rip it out to make new boobs. He said that's fine, but geez, he kept trying to emphasize how much better they'll look if I do it right away. Boobs have never been that important to me. If anything, they've caused me a lot of extra stress in my short lifetime and now I'd like for them and any semblance of them to go away for a while.
Since we're planning to do radiation, he said I'm not a candidate for an implant, at least not on the right side. I don't really like the idea of having a foreign object in my body for the rest of my life anyway, especially if it can cause extra complications. The tissue on that side won't heal very well after radiation, so it can't be expanded for an implant. He then squeezed the fat on my stomach (awesome), but said even though there's "some" fat there (thanks), it wouldn't be enough to do both boobs. So they start salvaging other parts of your body. In my case, he said he could use tissue from my back. Four large incisions in three different areas of my body all at once?? No thanks! Plus they'd be taking muscle from my back too. I can't really see the justification of sacrificing (any) muscle on my body for a boob. I'm already so weak from the chemo and the lymphedema in my dominant arm, I'd rather not make it any worse in the long run. Plus I googled some pictures of the stomach scar (pretty sure it's the DIEP flap procedure he was talking about), and it does not look like a fun recovery time.
I mentioned that if I did get reconstruction, I wouldn't want the same size. Whenever I say that, people always seem to assume I want bigger boobs for some reason. I'm five feet tall, I'd like, for the first time in my life, to have boobs that are appropriately sized for my body. So smaller. Much smaller. It's a nightmare finding bras to fit, and that 32 band size? Pretty sure it should be a 30 but they don't make those. I don't think the doctor took me seriously though, because he kept saying "for the same size" when he was mentioning all the parts he'd have to scrape together from the rest of me.
He said insurance should cover reconstruction, no matter when I have it done, so that shouldn't be an issue. However, for the best looking results, I should do it the same time as the mastectomy. After another four months of chemo, I can't imagine I'm going to feel well enough to change my mind about it. Plus there's that more important question of why get reconstruction at all? Maybe so clothes fit a little better, or so people don't mistake me for a 10-year-old year girl, or worse, a 10-year-old boy. My husband said he just wants me alive either way. Plus, I'd never be able to feel them. The numbness in my arm still feels weird, and the mastectomy scars should be numb too, I don't want extra tissue hanging off me that I can't even feel. Why pretend to make it seem normal?
He also kept mentioning how important it is to get back to a good "quality of life". Maybe I'm just a little dazed from chemo brain, but the way he kept saying it made it seem like I would never have a decent quality of life if I didn't get new boobs. If anything, not having extra, unnecessary surgery right now will give me a better quality of life, considering I'll be able to return to normal activities much sooner. I asked if I could just wait until my stomach inevitably gets fatter and THEN have them rip it out to make new boobs. He said that's fine, but geez, he kept trying to emphasize how much better they'll look if I do it right away. Boobs have never been that important to me. If anything, they've caused me a lot of extra stress in my short lifetime and now I'd like for them and any semblance of them to go away for a while.
Tuesday, October 4, 2011
Final Round of Adriamycin! Mmm... Back to Nausea...
I saw the radiation oncologist again Friday to find out what she wants to do. She said she talked with 3 other radiation oncologists and they all agreed that I should get radiation, but Dr. B herself is still kind of hesitant. Here's a link to the study she was looking at trying to determine what'd be best in my case. She ran through a bunch of numbers and statistics that made me wish I hadn't slept through that statistics class freshmen year, but overall, she said considering my age and the SLIGHT improvement they've seen in patients with the small number of positive nodes and size of the tumor, that we should plan on going ahead with it. I told her they're testing me for the p53 gene and we'll get the results in 3 weeks, which might affect her decision. I'll meet with her again after chemo is over to figure out all the details.
I finally got that last round of the Adriamycin yesterday. My hemoglobin went up to 9.4 and my platelets were 96. My blood pressure's still pretty low. Dr. C is out for the week, so I saw his assistant Phyllis again. I asked her about the pain in my right hand and arm, and she looked at it and noticed it's starting to swell. Yay for lymphedema. Here's a link for some info on it. She said she'd send me to a physical therapist specializing in lymphedema treatment "when [I'm] ready"? I guess she meant when I'm not getting my ass kicked so much by all this chemo. When I went back today for my Neulasta shot, I ran into her again and asked if I could get a referral sooner since I'm going to be flying across the country in a month. I'll need a compression sleeve before I go on that trip since it's such a long flight.
I also asked her about possibly rescheduling one of my upcoming chemo sessions so I can go down to SC to visit friends and family October 28th through November 5th. She said to come in for my next appointment as usual and we'll see how my counts are doing. (Knowing me, they'll be low anyway.) And then plan on getting chemo November 7th regardless since I'm going out of town the week before and that week itself. Tight schedule... But it's good to know they'll try to work with me on it. I'll probably be miserable during my Portland trip thanks to chemo.
Since I'd gone in so late in the day, I guess Phyllis had some free time to chat. She said the fatigue I'm experiencing so much lately probably isn't going to get much better since I'm going into month THREE of chemo and won't be done til FEBRUARY. I also told her I'm thinking about skipping reconstruction altogether or at least delaying it since I'm definitely going to be wiped out by the time I have my mastectomy surgery. She said that's probably a good idea since I'm going to have radiation, and that radiated skin doesn't heal as well as normal skin. So much fun stuff going on...
On to ACTUAL fun stuff: my mom suggested a birthday party since I'm going to be home for my birthday. But most of my friends are still in Charleston, so we're going to try to have the party down there October 29th. I'm looking into renting a house or something and having my mom cook dinner. It'd be nice to have a post-chemo/pre-mastectomy party too in February or March. Lots of time left to plan for that one though.
I finally got that last round of the Adriamycin yesterday. My hemoglobin went up to 9.4 and my platelets were 96. My blood pressure's still pretty low. Dr. C is out for the week, so I saw his assistant Phyllis again. I asked her about the pain in my right hand and arm, and she looked at it and noticed it's starting to swell. Yay for lymphedema. Here's a link for some info on it. She said she'd send me to a physical therapist specializing in lymphedema treatment "when [I'm] ready"? I guess she meant when I'm not getting my ass kicked so much by all this chemo. When I went back today for my Neulasta shot, I ran into her again and asked if I could get a referral sooner since I'm going to be flying across the country in a month. I'll need a compression sleeve before I go on that trip since it's such a long flight.
I also asked her about possibly rescheduling one of my upcoming chemo sessions so I can go down to SC to visit friends and family October 28th through November 5th. She said to come in for my next appointment as usual and we'll see how my counts are doing. (Knowing me, they'll be low anyway.) And then plan on getting chemo November 7th regardless since I'm going out of town the week before and that week itself. Tight schedule... But it's good to know they'll try to work with me on it. I'll probably be miserable during my Portland trip thanks to chemo.
Since I'd gone in so late in the day, I guess Phyllis had some free time to chat. She said the fatigue I'm experiencing so much lately probably isn't going to get much better since I'm going into month THREE of chemo and won't be done til FEBRUARY. I also told her I'm thinking about skipping reconstruction altogether or at least delaying it since I'm definitely going to be wiped out by the time I have my mastectomy surgery. She said that's probably a good idea since I'm going to have radiation, and that radiated skin doesn't heal as well as normal skin. So much fun stuff going on...
On to ACTUAL fun stuff: my mom suggested a birthday party since I'm going to be home for my birthday. But most of my friends are still in Charleston, so we're going to try to have the party down there October 29th. I'm looking into renting a house or something and having my mom cook dinner. It'd be nice to have a post-chemo/pre-mastectomy party too in February or March. Lots of time left to plan for that one though.
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