My mom's surgery goes remarkably well. There are no complications and from what the doctors could tell at the time of surgery, there was no cancer. Phew. I go to see her in the recovery room. She looks amazing. Her face is full of color and she's pretty alert considering she's just undergone a 5 hour operation. The narcotics haven't worn off yet and she repeatedly tells me that she can't stop talking and that I look beautiful. If she's going to repeat herself, I'm glad it's going to be complimenting me. Her plastic surgeon, Susan Downey, used an anesthesia pack not used at Cedars and my mom swears it's a miracle. She tells me over and over again that she has no pain in her stomach and only a tiny bit in her breast (in addition to a mastectomy and reconstruction she had the muscle and mesh in her stomach that weakened from her TRAM flap 10 years ago tightened). She also tells me over and over that I need to use the pack for my C-section and mastectomies.
Hours later when I'm leaving the hospital, I decide to see if my buzz cut and big belly can still get me free (or almost free) parking. I've parked in the South Tower lot of Cedars clearly marked for Admissions. I go to the front desk and ask the clerk to validate my parking ticket. He asks me what I'm here for. I tell him that I dropped my mother off for surgery. "When?" he asks. "Early this morning," I tell him (it's currently 1000pm). "Have you been here all day?" he wants to know. "I haven't," I respond. He validates me anyway. The validation means I only have to pay $4 instead of $15. Whoo hoo! When I show my ticket to the clerk at the parking lot exit, he smiles and waives me through. Maybe he thought I was sick or possibly returning from my tour in Iraq, but regardless, I leave without paying a dime, which makes me smile.
I don't know if it's the pack that's a miracle or my mom, but she gets the okay to go home 24 hours later. She had been told to expect 3-5 days in the hospital. She's thrilled and we are, too. The other thrilling news for me is that her doctors think it's a great sign for me that she's been cancer free for so long while having the BRCA1 gene. Even though my numbers suck, they tell her that those numbers are culled from a large genetic pool. She and I share the same mutation and similar genes, so most likely that's good news for me. Another phew. But 4 days later, Dr. Funk calls my mom to tell her that she definitely made the right decision by choosing to undergo the prophylactic mastectomy because the final pathology report revealed precancerous cells. Those cells would have become cancer in the next few years. So I guess that's 1 good thing about my cancer. It (and I) spared my mom from having to suffer through cancer again. I'm nervous that maybe her pathology report means something bad for me, but Boris reminds me that those cells were not a recurrence of her original cancer 25 years ago. They were the beginning of a new, primary cancer, which isn't that surprising given the BRCA1 gene and its statistics. He reminds me (and Dr. Funk confirms) that by removing both breasts, I'm reducing my chance of a new, primary cancer to almost nothing. Rude that it isn't nothing, but it's the best I can do. It still doesn't help my crappy numbers in terms of recurrence and death, but that's where my mom's genes come in (I hope I hope I hope).
So finally...some good news. My mom is doing great, isn't getting cancer again, and hopefully I will follow in her footsteps.
The other bit of news (I think it's good) is that I've changed my mind about plastic surgeons....again. My mom had such a great experience with Dr. Downey and Dr. Funk was very impressed with her work so I'm going to use her. When I met with her and explained my hatred of implants, she showed me several pictures of women who had some slope in the shape of their breasts which is what I'm hoping for (as opposed to the coconut shells on the hula girl shape). I know that Dr. Slate's work is amazing and reliable, but I'm hoping that maybe I can get a more natural look. So now I really have made all of my decisions (although I certainly reserve my right to change my mind for the 89736349th time). I have a new surgeon and plastic surgeon ready to go in June.
Now I just have to get through the next 6 months with a newborn and chemo and crazy surgery and radiation. I feel a second withdrawal coming on soon.
Wednesday, January 28, 2009
Wednesday, January 21, 2009
Happy New Year?
I've often found that when someone is making up an excuse, they tend to lay it on so thick that it makes the lie that much more obvious. Instead of just saying "sorry I'm late, I should have left more time for traffic," he or she might say, "sorry I'm late, I lost my keys, got rear ended, the freeways were a parking lot and then I had to rescue a busload of orphans." When I think about how to describe the first month of this year, I can't help but feel that people will think I'm adjusting the plot for dramatic effect. I'm not saying that 2009 is worse than 2008, but let's just say we're not off to the best start. So much for leaving all the really bad shit behind with last year. Of course I knew that along with starting out the new year with a new baby, I'd also be starting it out with cancer and more treatment. But I didn't know that along with treatment I'd be starting off the new year with a lot of unexpected, and to put it bluntly, fucked up, drama. If it wasn't actually happening to me, I don't think I'd believe it.
First, my mom had an irregular mammogram of her remaining breast. Whatever it was, it was too small to biopsy and according to her follow up tests, isn't cancer. But, we did get confirmation that she is a gene carrier (she and I not surprisingly have the same mutation). She's to be monitored more closely. Dr. Funk suggested a prophylactic mastectomy given the incredibly high chance of my mom developing a new cancer in her breast (87% by the time she's 70) but my mom didn't want to hear it given everything I'm going through. Worst timing ever. But, I told her that she has to have the surgery tomorrow because I'm going to need her when Miracle Warrior is born. It's never going to be a good time and at least I'm doing well at the moment. After his arrival, it's going to be chaos and chemo. I remind her that as much as she hates surgery and lord knows she's had enough for a lifetime, in case she's forgotten, cancer and especially chemo are worse. So, she's scheduled to have a mastectomy and reconstruction next week. Because it's not enough for 1 family member to have to go through this at a time.
As if that's not enough, in a random IM chat with my mom (my cancer has catapulted my mom into the 21st century and she now emails and IMs with me regularly) she mentions that Dr. Funk is pregnant with triplets who are due in June. What!? Not to be totally selfish, but my surgery is scheduled for June so what does this mean for me!? I email Dr. Funk and of course congratulate her but ask if I need to find a new surgeon. I'm not sure why I ask because I already know the answer. Even if she wasn't delivering in June but anytime near June I wouldn't use her. I've been a new mom and only to 1 child and my brain definitely didn't function normally. So there's no way I'm letting a new mother of 3 perform an incredibly complex, lengthy surgery on me. Dr. Funk asks me to find out if I can wait 4-6 weeks to have my surgery and if not, she recommends a few surgeons for me to meet. I don't want to wait 5 minutes to finish this hellish process, so there's no way I'm waiting a month (and Dr. McAndrew says absolutely no way), plus we have the whole new mom of triplets doing my surgery issue (I hope that's not sexist of me - I was a Women's Studies major and basically have an all female medical team but....), so I have to find a new surgeon. I tell Dr. Funk that I love her and want her to be my BFF, but I have to end this chapter of my life so I'm going to find someone else. So much for being done with all of my decisions. Thankfully there are other great surgeons to choose from although I kindof want to cry that I have to start all over again with someone else. Dr. Funk responds "well BFF, TTYL." Love her.
And if that's not enough, I had to give Norman away. He peed around the house so many times that I just couldn't take another drop. In the last 2 weeks he peed on the couch 3 times (once with me on it and quite honestly I was in such shock that I couldn't even move and didn't know where to begin the cleaning process. Me? The couch? Just shoot me.), knocked over my favorite vase because he prefers to drink water out of freshly cut flowers in expensive home decor and left poop bits scattered around the house, shoes, etc. (sometimes by accident, other times, we suspect not). I have no immune system and am not supposed to clean the litter box let alone mop urine and feces up several times a week. My new hero, Dana, is very involved with a cat sanctuary that she swears is amazing (and I trust her completely). She says they will take such good care of Norman and maybe even find him a new home. She took him to the sanctuary on Saturday. I cried my eyes out as I said goodbye to Norman and apologized to him, explaining that I just didn't know what else to do. 2 days later, Dana sends me the following email from the head of the sanctuary:
Norman is doing terrible here - he is extremely stressed and actually very violent. I'm sure in time he'll calm down, that's not the kind of cat he is, it's just a very hard transition. They've had to skip some of the shots - nobody can handle him without risking going to the ER.
And Dana tells me that he hasn't eaten anything at all. So now I feel even worse. I just cry and cry. We decide the best thing is for Norman to spend a few days at my parents' house. Even though he'll mostly be alone in a room upstairs, it won't be nearly as stressful as the sanctuary. Then the most amazing thing happens. A colleague of a dear friend's mom offers to adopt Norman - urine, diabetes and all! She and her husband are saints. They have a 20 year old cat and a 2 year old dog, but no kids to terrorize him. Norman is apparently hanging in there. He's not thrilled, but is eating a little even though he's hissing at everyone. He's even taken over the dog's bed which is a great sign. Even better though, the couple is committed to making Norman part of their family and I'm so relieved. Now I just have to deal with Mattie losing her best, although sometimes abusive friend of 12 years. Boris amazingly agreed to let her sleep with us as long as she didn't wake us or Miles up, but that sadly only lasted for 2 nights. So now Mattie has to sleep downstairs by herself which also makes me want to cry, but not as much as listening to her clean herself (one of the most irritating noises ever) at 3 in the morning.
But why should I expect things to go well? Not 2 days later, I get a call from the saints informing me that Norman has stopped eating and is incredibly lethargic and barely moving. They're going to take him to the vet. The vet calls me Monday evening to tell me that Norman needs food, hydration, insulin therapy and will have to spend several days in the hospital at the cost of $1200 a day. Holy shit. I ask if what they're doing will jump start his appetite or is the problem that Norman is never going to be okay with anyone else but me (even though I don't think he was very happy here, hence the intentional urination on me and my things). There's no way for the vet to know that, but he does tell me that even though Norman needs medical attention stat!, he's hissing and violent and really is his own worst enemy. Fucking great. My options are to spend a fortune on a 13 year old cat who is likely to be back in the hospital days later from his hunger strike, or put him to sleep (why do we call it that when really, my option is to kill him). I'm so stressed out and don't know what to do. I can't believe I have to make this decision in like, 3 minutes. I tell the vet not to do anything and I'm coming to see Norman.
Boris and I get to vet's office just as they're closing. The saints are there and they couldn't be nicer and sorrier that things went south. I pick Norman up and hold him for a few minutes. He just lays there. So not Norman. Even though I am the only person who he loves, he never, never, never lets me hold him. He's no longer himself. He's sick. And old. And I want to die. I'm pretty hysterical but decide that I have to put myself first for once. I've put my health at risk to clean his urine and feces and give him shots that I wasn't supposed to and I can't do it anymore. In 4 weeks I'm going to add a newborn to the mix and know that I just can't do it all. I tell the vet that I'm going to put him to sleep but that I want to hold him and be there with him. The vet explains that they will have to put an i.v. in Norman and sedate him first because they can't risk any harm to me. Fine. They take Norman to put the i.v. in. It seems to take an eternity and through my sobs I ask Boris to find out what the hell is going on. I want Norman back. Now! Boris returns with the vet and with Norman. They've already sedated him and I'm suicidal. This is not the way it was supposed to go. The vet seriously asks me 20 times if I have any questions at this time. I'm sure it's protocol , but I wish he'd shut the fuck up. What questions could I possibly have and I've already said no 20 times. Why ask again? He administers the shots and within seconds, Norman is gone. I hold him sobbing for a while. But it's for me, not for him and it was supposed to be the other way around. I wanted to hold him during the stressful parts for him, like the i.v. and sedation. But I guess asking a vet to let an 8.5 month pregnant person with cancer (I showed up with my G.I. Jane buzz cut) hold a violent cat while getting an i.v. is a bit much?
So on top of pregnancy and cancer and my mom having surgery, I just killed my cat who I loved tremendously for 13 years. I'm a fucking wreck. I'm wondering what else can come my way and how much more I can take.
And just in case that's not enough, we received a second letter from the I.R.S. asking for our tax return from another year. When Boris called about the first letter, he was told that the I.R.S. needed our return for their investigation of another tax payer. But now this? Whatever. At least it doesn't require anything physically painful or death.
And speaking of physically painful, I have a new unbelievably torturous pain in my pelvis. It feels like someone (I'm assuming Miracle Warrior) is pulling my bones apart. Actually, it's more like he's pulling them down into the ground and somehow I hope holding up my vagina will help the pain when I walk. It doesn't. I just look like a giant asshole and Boris keeps asking me what the hell I'm doing and can he help. I realize it doesn't sound like it, but I'm not complaining, just sharing. I'm still so glad to be pregnant that I don't care how painful it gets, but it's just something to throw into the mix.
So there's my lengthy, piled on set of issues. It's just sadly all true. Happy fucking new year to me.
So far 2009 is off to a great start. At least it's not uneventful. And despite the drama and pain and death it's not all bad. I'm feeling much better. Just exhausted, but not poisoned or on drugs, so that's good. And at my most recent blood draw at Tower, I talk to Angela and learn some news about my second round of chemo that makes me feel better about it. She tells me that if I choose the weekly chemo regimen, I'm not likely to feel like death all the time. Just for a day or two. Plus she says that in her opinion, the regimen I just completed is much more toxic with far worse side effects and I did so well with it that maybe I'll have a repeat performance. Plus, she says I won't need the really horrible steroid that will cause all my bones to hurt. If my counts get too low, I will need to boost them up, but she'll use a different, less painful steroid and a smaller dose of it. And I won't get it automatically. We'll just have to see how I do. Sad that that is good news, but it is.
Plus, there's the overwhelming daily joy I get from Miles. He just gets more amazing by the second and makes me laugh and smile all the time. Boris tells me that although this is undoubtedly the most challenging and saddest time in his life, it's also the happiest. He and I have a weekly date night and despite the intense stress we're living under, we still love each other fiercely and are doing the best we can. Miles brings him endless joy and he's so excited to meet Miracle Warrior. Me too.
And speaking of the miraculous warrior, I just had my last appointment with Dr. Silverman before I see him the day before my scheduled C-section to ensure Miracle Warrior's lung maturity. Miracle Warrior is perfect. Perfect! Dr. Silverman actually says "this kid looks great and I am really really happy." If he's happy I am ecstatic. And Miracle Warrior is still big for his age. He's just under 5 pounds at the moment so he should be about 7 pounds when he's born. Had I carried him to term, he'd be 9 pounds, just like his perfectly healthy and amazing brother. Dr. Silverman tells me how great it is that I had no growth restriction at all. "Since the placenta consists of rapidly dividing cells and the chemo is attacking rapidly dividing cells, it's a risk," he says. It is great news, but I ask him if that means the chemo didn't work. Of course I have to take good news and find something alarming about it. But it is a little scary, right? He tells me that chemo affects everyone differently and that we could take 5 women staged exactly the same and give them the same chemo regimen and they will all react differently.
I'm karmically due for some good news and good times so hopefully my newly sprouted hair and large, healthy baby are signs of good things to come - not my treatment failing. One of my closest friends told me that Miracle Warrior wasn't affected by my treatment because he was meant to be. I think she's right.
First, my mom had an irregular mammogram of her remaining breast. Whatever it was, it was too small to biopsy and according to her follow up tests, isn't cancer. But, we did get confirmation that she is a gene carrier (she and I not surprisingly have the same mutation). She's to be monitored more closely. Dr. Funk suggested a prophylactic mastectomy given the incredibly high chance of my mom developing a new cancer in her breast (87% by the time she's 70) but my mom didn't want to hear it given everything I'm going through. Worst timing ever. But, I told her that she has to have the surgery tomorrow because I'm going to need her when Miracle Warrior is born. It's never going to be a good time and at least I'm doing well at the moment. After his arrival, it's going to be chaos and chemo. I remind her that as much as she hates surgery and lord knows she's had enough for a lifetime, in case she's forgotten, cancer and especially chemo are worse. So, she's scheduled to have a mastectomy and reconstruction next week. Because it's not enough for 1 family member to have to go through this at a time.
As if that's not enough, in a random IM chat with my mom (my cancer has catapulted my mom into the 21st century and she now emails and IMs with me regularly) she mentions that Dr. Funk is pregnant with triplets who are due in June. What!? Not to be totally selfish, but my surgery is scheduled for June so what does this mean for me!? I email Dr. Funk and of course congratulate her but ask if I need to find a new surgeon. I'm not sure why I ask because I already know the answer. Even if she wasn't delivering in June but anytime near June I wouldn't use her. I've been a new mom and only to 1 child and my brain definitely didn't function normally. So there's no way I'm letting a new mother of 3 perform an incredibly complex, lengthy surgery on me. Dr. Funk asks me to find out if I can wait 4-6 weeks to have my surgery and if not, she recommends a few surgeons for me to meet. I don't want to wait 5 minutes to finish this hellish process, so there's no way I'm waiting a month (and Dr. McAndrew says absolutely no way), plus we have the whole new mom of triplets doing my surgery issue (I hope that's not sexist of me - I was a Women's Studies major and basically have an all female medical team but....), so I have to find a new surgeon. I tell Dr. Funk that I love her and want her to be my BFF, but I have to end this chapter of my life so I'm going to find someone else. So much for being done with all of my decisions. Thankfully there are other great surgeons to choose from although I kindof want to cry that I have to start all over again with someone else. Dr. Funk responds "well BFF, TTYL." Love her.
And if that's not enough, I had to give Norman away. He peed around the house so many times that I just couldn't take another drop. In the last 2 weeks he peed on the couch 3 times (once with me on it and quite honestly I was in such shock that I couldn't even move and didn't know where to begin the cleaning process. Me? The couch? Just shoot me.), knocked over my favorite vase because he prefers to drink water out of freshly cut flowers in expensive home decor and left poop bits scattered around the house, shoes, etc. (sometimes by accident, other times, we suspect not). I have no immune system and am not supposed to clean the litter box let alone mop urine and feces up several times a week. My new hero, Dana, is very involved with a cat sanctuary that she swears is amazing (and I trust her completely). She says they will take such good care of Norman and maybe even find him a new home. She took him to the sanctuary on Saturday. I cried my eyes out as I said goodbye to Norman and apologized to him, explaining that I just didn't know what else to do. 2 days later, Dana sends me the following email from the head of the sanctuary:
Norman is doing terrible here - he is extremely stressed and actually very violent. I'm sure in time he'll calm down, that's not the kind of cat he is, it's just a very hard transition. They've had to skip some of the shots - nobody can handle him without risking going to the ER.
And Dana tells me that he hasn't eaten anything at all. So now I feel even worse. I just cry and cry. We decide the best thing is for Norman to spend a few days at my parents' house. Even though he'll mostly be alone in a room upstairs, it won't be nearly as stressful as the sanctuary. Then the most amazing thing happens. A colleague of a dear friend's mom offers to adopt Norman - urine, diabetes and all! She and her husband are saints. They have a 20 year old cat and a 2 year old dog, but no kids to terrorize him. Norman is apparently hanging in there. He's not thrilled, but is eating a little even though he's hissing at everyone. He's even taken over the dog's bed which is a great sign. Even better though, the couple is committed to making Norman part of their family and I'm so relieved. Now I just have to deal with Mattie losing her best, although sometimes abusive friend of 12 years. Boris amazingly agreed to let her sleep with us as long as she didn't wake us or Miles up, but that sadly only lasted for 2 nights. So now Mattie has to sleep downstairs by herself which also makes me want to cry, but not as much as listening to her clean herself (one of the most irritating noises ever) at 3 in the morning.
But why should I expect things to go well? Not 2 days later, I get a call from the saints informing me that Norman has stopped eating and is incredibly lethargic and barely moving. They're going to take him to the vet. The vet calls me Monday evening to tell me that Norman needs food, hydration, insulin therapy and will have to spend several days in the hospital at the cost of $1200 a day. Holy shit. I ask if what they're doing will jump start his appetite or is the problem that Norman is never going to be okay with anyone else but me (even though I don't think he was very happy here, hence the intentional urination on me and my things). There's no way for the vet to know that, but he does tell me that even though Norman needs medical attention stat!, he's hissing and violent and really is his own worst enemy. Fucking great. My options are to spend a fortune on a 13 year old cat who is likely to be back in the hospital days later from his hunger strike, or put him to sleep (why do we call it that when really, my option is to kill him). I'm so stressed out and don't know what to do. I can't believe I have to make this decision in like, 3 minutes. I tell the vet not to do anything and I'm coming to see Norman.
Boris and I get to vet's office just as they're closing. The saints are there and they couldn't be nicer and sorrier that things went south. I pick Norman up and hold him for a few minutes. He just lays there. So not Norman. Even though I am the only person who he loves, he never, never, never lets me hold him. He's no longer himself. He's sick. And old. And I want to die. I'm pretty hysterical but decide that I have to put myself first for once. I've put my health at risk to clean his urine and feces and give him shots that I wasn't supposed to and I can't do it anymore. In 4 weeks I'm going to add a newborn to the mix and know that I just can't do it all. I tell the vet that I'm going to put him to sleep but that I want to hold him and be there with him. The vet explains that they will have to put an i.v. in Norman and sedate him first because they can't risk any harm to me. Fine. They take Norman to put the i.v. in. It seems to take an eternity and through my sobs I ask Boris to find out what the hell is going on. I want Norman back. Now! Boris returns with the vet and with Norman. They've already sedated him and I'm suicidal. This is not the way it was supposed to go. The vet seriously asks me 20 times if I have any questions at this time. I'm sure it's protocol , but I wish he'd shut the fuck up. What questions could I possibly have and I've already said no 20 times. Why ask again? He administers the shots and within seconds, Norman is gone. I hold him sobbing for a while. But it's for me, not for him and it was supposed to be the other way around. I wanted to hold him during the stressful parts for him, like the i.v. and sedation. But I guess asking a vet to let an 8.5 month pregnant person with cancer (I showed up with my G.I. Jane buzz cut) hold a violent cat while getting an i.v. is a bit much?
So on top of pregnancy and cancer and my mom having surgery, I just killed my cat who I loved tremendously for 13 years. I'm a fucking wreck. I'm wondering what else can come my way and how much more I can take.
And just in case that's not enough, we received a second letter from the I.R.S. asking for our tax return from another year. When Boris called about the first letter, he was told that the I.R.S. needed our return for their investigation of another tax payer. But now this? Whatever. At least it doesn't require anything physically painful or death.
And speaking of physically painful, I have a new unbelievably torturous pain in my pelvis. It feels like someone (I'm assuming Miracle Warrior) is pulling my bones apart. Actually, it's more like he's pulling them down into the ground and somehow I hope holding up my vagina will help the pain when I walk. It doesn't. I just look like a giant asshole and Boris keeps asking me what the hell I'm doing and can he help. I realize it doesn't sound like it, but I'm not complaining, just sharing. I'm still so glad to be pregnant that I don't care how painful it gets, but it's just something to throw into the mix.
So there's my lengthy, piled on set of issues. It's just sadly all true. Happy fucking new year to me.
So far 2009 is off to a great start. At least it's not uneventful. And despite the drama and pain and death it's not all bad. I'm feeling much better. Just exhausted, but not poisoned or on drugs, so that's good. And at my most recent blood draw at Tower, I talk to Angela and learn some news about my second round of chemo that makes me feel better about it. She tells me that if I choose the weekly chemo regimen, I'm not likely to feel like death all the time. Just for a day or two. Plus she says that in her opinion, the regimen I just completed is much more toxic with far worse side effects and I did so well with it that maybe I'll have a repeat performance. Plus, she says I won't need the really horrible steroid that will cause all my bones to hurt. If my counts get too low, I will need to boost them up, but she'll use a different, less painful steroid and a smaller dose of it. And I won't get it automatically. We'll just have to see how I do. Sad that that is good news, but it is.
Plus, there's the overwhelming daily joy I get from Miles. He just gets more amazing by the second and makes me laugh and smile all the time. Boris tells me that although this is undoubtedly the most challenging and saddest time in his life, it's also the happiest. He and I have a weekly date night and despite the intense stress we're living under, we still love each other fiercely and are doing the best we can. Miles brings him endless joy and he's so excited to meet Miracle Warrior. Me too.
And speaking of the miraculous warrior, I just had my last appointment with Dr. Silverman before I see him the day before my scheduled C-section to ensure Miracle Warrior's lung maturity. Miracle Warrior is perfect. Perfect! Dr. Silverman actually says "this kid looks great and I am really really happy." If he's happy I am ecstatic. And Miracle Warrior is still big for his age. He's just under 5 pounds at the moment so he should be about 7 pounds when he's born. Had I carried him to term, he'd be 9 pounds, just like his perfectly healthy and amazing brother. Dr. Silverman tells me how great it is that I had no growth restriction at all. "Since the placenta consists of rapidly dividing cells and the chemo is attacking rapidly dividing cells, it's a risk," he says. It is great news, but I ask him if that means the chemo didn't work. Of course I have to take good news and find something alarming about it. But it is a little scary, right? He tells me that chemo affects everyone differently and that we could take 5 women staged exactly the same and give them the same chemo regimen and they will all react differently.
I'm karmically due for some good news and good times so hopefully my newly sprouted hair and large, healthy baby are signs of good things to come - not my treatment failing. One of my closest friends told me that Miracle Warrior wasn't affected by my treatment because he was meant to be. I think she's right.
Saturday, January 10, 2009
The End of the Beginning
The day after round 6 I don't feel nearly as terrible as expected. Round 5 was way worse. I couldn't really eat my new year's eve dinner and needed to get air several times to quell the nausea, but we did venture out with friends and I was awake (although not so pleased about it) at midnight. The next few days weren't the best, but not the worst either, so it could have been worse. The doctors' appointments have started tapering off too, which is scary and a relief all at the same time.
I meet with Dr. McAndrew 1 week after round 6 and have to wait forever. I thought cancer had taught me patience for doctors, but I am impatient and annoyed. She's pleased with my blood results and says that she doesn't need to see me again until I'm about to deliver. "What?," I ask her. "Don't I need to be monitored? What if the cancer comes back? Don't you want to take some blood or something?" She smiles and tells me that my white blood counts are higher than most people's are normally, and I'm in my low immunity week, so it's not necessary. And sadly, there's really no way to know whether my cancer has come back or has metastasized until I can have my scans, which I can't do until I deliver. She tells me that we can set my scans up now though and again tells me how much better I'll feel once I have them. I guess I'll feel better if they come back clear, but not so much if they don't. The only reason I need to come back to Tower over the next 7 weeks is to have my port flushed out. So scary. And so nice.
We spend a long time discussing my next chemo regimen and the options I have. I can either have smaller, weekly doses that I am more likely to tolerate well, larger doses every 3 weeks if I don't want to come to the office every week, and larger doses every 2 weeks that I probably won't tolerate well at all, but I'd be finished with treatment in 2 months instead of 3. Dr. McAndrew warns that this condensed "dose dense" treatment is particularly brutal because the body really needs 3 weeks to recuperate. She says that no studies indicate a difference in the results of the treatments and that we can discuss as we get closer to March, but that the decision is mine. I email my friend who is a fellow at U.C.I to see if Dr.Mehta , who I met with before beginning treatment, has any insight into which course of treatment is best prognostically. I wonder if it's better to feel pretty crappy for 3 months or incredibly crappy for 2. Boris and I will discuss.
Now that I only have 1 or 2 doctors' appointments a week instead of daily appointments, I decide to cut back on acupuncture to take advantage of my time off. The fewer appointments the better. For some reason, even though I'm super anal and so good about taking medications, I can't seem to remember to take all of my herbs. Each time I see Dr. Dao he asks me if I need more and usually I don't. He asks me how I'm feeling and about my appetite. I tell him I'm feeling pretty good, just tired, and my appetite is fine. He asks me what I've been eating. "Macaroni and cheese," I tell him. He looks up at me with a quizzical look and smiles. "Sharon, you know that's all fat, right?" "Yes," I tell him. "And it's delicious. I'm going to have to eat the saddest most un-delicious food for the rest of my life, so please don't make me feel bad about my macaroni!" He laughs and says I can eat anything I want but warns me that after I've completed chemo, he's putting me on a strict diet. Hurray. He also tells me that I should drink freshly made vegetable juice daily. "Nothing sweet," he says. "Greens, celery, cabbage, ginger, carrot tops." I can include a beet for flavor. I promptly order a juicer. The juice is one of the most disgusting concoctions ever. It takes me 1/2 a day to drink 1 glass. Now I cheat and add a carrot and a pear and it's much more tolerable. So tolerable that Miles will occasionally take a sip (although he usually ends up letting it dribble out of his mouth all over my clothes or floor).
I also use my time off to meet Susan, a woman I was introduced to when I was first diagnosed. Like me, she was diagnosed with a triple negative tumor during her first trimester, and like me, she opted to keep her baby while battling the disease. Unlike me her cancer didn't spread to her lymph nodes. She has been a source of strength, inspiration and information to me. When I first spoke to her she told me that after going through this, I will be superwoman and there won't be anything I can't do, there won't be anything that's overwhelming or daunting (except beating cancer). It is so wonderful to put a face to her voice and emails and best of all, I meet her gorgeous, perfectly healthy, happy little girl who just turned 6 months old. Susan and I could talk for hours about our experiences so far, our fear of the cancer returning, our babies. She shows me pictures of what she looked like pre-cancer. Her now dark brown, wavy short hair used to be straight and blond. I wonder what I'll look like when my new hair returns (which, thankfully, it has started to do! I look like G.I. Jane again. My hair is dark but too short to tell whether it's straight or curly. I can only tell that it's not as thick as before, although I've been told that will change.).
We spend a long time talking about how different our second pregnancies were/are from our first. With Miles, I knew his exact gestational age every day of my pregnancy. I knew how he was developing every day of my pregnancy. I knew when his bones were developing and when he was getting eyelashes, nails and hair. I thought about being pregnant every day. This time....not so much. I've had to ask Dr. Ottavi several times how far along I am in my pregnancy. I have no idea what Miracle Warrior is doing, I just know that he's busy and miraculous and kicking ass (often mine) every day. That's really all I care about. Miles' room was in perfect order a month before his due date. Miracle Warrior's room looks like a bomb of baby clothes exploded all over it. He has no furniture. And he probably won't until after he's born. And as much as I want to nest, and swear that our lives might come to an end if I don't have a chair for his room prior to his arrival, I know that he doesn't need furniture. He just needs me and Boris and some diapers.
I'm also using my time off to obsess about important things like new end tables for the bedroom, more pillows for my couches and art to hang on the bare walls of the house we've been living in for over a year. I'm driving Boris nuts with my daily emails and questions about decorating. I'm trying to convince him to let me buy an amazing orange leather chair that I "need." He swears it will go on sale and I explain to him that things I want never go on sale. A wise friend recently told me that if you have taste, what you want doesn't go on sale. So true. And so sad. I thought we were in an economic crisis but the stores that I want to buy things at apparently aren't suffering. At least not enough to discount the items I want. Sigh. Even though I can't buy anything I want at the moment, I'm enjoying browsing Elle Decor and Cisco Brothers instead of medical journals and cancer websites. It just feels so much better wondering which chair I should buy than which surgeon, chemo regimen, reconstruction technique, and the million other surreal choices I've made in the last few months.
I meet with Dr. McAndrew 1 week after round 6 and have to wait forever. I thought cancer had taught me patience for doctors, but I am impatient and annoyed. She's pleased with my blood results and says that she doesn't need to see me again until I'm about to deliver. "What?," I ask her. "Don't I need to be monitored? What if the cancer comes back? Don't you want to take some blood or something?" She smiles and tells me that my white blood counts are higher than most people's are normally, and I'm in my low immunity week, so it's not necessary. And sadly, there's really no way to know whether my cancer has come back or has metastasized until I can have my scans, which I can't do until I deliver. She tells me that we can set my scans up now though and again tells me how much better I'll feel once I have them. I guess I'll feel better if they come back clear, but not so much if they don't. The only reason I need to come back to Tower over the next 7 weeks is to have my port flushed out. So scary. And so nice.
We spend a long time discussing my next chemo regimen and the options I have. I can either have smaller, weekly doses that I am more likely to tolerate well, larger doses every 3 weeks if I don't want to come to the office every week, and larger doses every 2 weeks that I probably won't tolerate well at all, but I'd be finished with treatment in 2 months instead of 3. Dr. McAndrew warns that this condensed "dose dense" treatment is particularly brutal because the body really needs 3 weeks to recuperate. She says that no studies indicate a difference in the results of the treatments and that we can discuss as we get closer to March, but that the decision is mine. I email my friend who is a fellow at U.C.I to see if Dr.Mehta , who I met with before beginning treatment, has any insight into which course of treatment is best prognostically. I wonder if it's better to feel pretty crappy for 3 months or incredibly crappy for 2. Boris and I will discuss.
Now that I only have 1 or 2 doctors' appointments a week instead of daily appointments, I decide to cut back on acupuncture to take advantage of my time off. The fewer appointments the better. For some reason, even though I'm super anal and so good about taking medications, I can't seem to remember to take all of my herbs. Each time I see Dr. Dao he asks me if I need more and usually I don't. He asks me how I'm feeling and about my appetite. I tell him I'm feeling pretty good, just tired, and my appetite is fine. He asks me what I've been eating. "Macaroni and cheese," I tell him. He looks up at me with a quizzical look and smiles. "Sharon, you know that's all fat, right?" "Yes," I tell him. "And it's delicious. I'm going to have to eat the saddest most un-delicious food for the rest of my life, so please don't make me feel bad about my macaroni!" He laughs and says I can eat anything I want but warns me that after I've completed chemo, he's putting me on a strict diet. Hurray. He also tells me that I should drink freshly made vegetable juice daily. "Nothing sweet," he says. "Greens, celery, cabbage, ginger, carrot tops." I can include a beet for flavor. I promptly order a juicer. The juice is one of the most disgusting concoctions ever. It takes me 1/2 a day to drink 1 glass. Now I cheat and add a carrot and a pear and it's much more tolerable. So tolerable that Miles will occasionally take a sip (although he usually ends up letting it dribble out of his mouth all over my clothes or floor).
I also use my time off to meet Susan, a woman I was introduced to when I was first diagnosed. Like me, she was diagnosed with a triple negative tumor during her first trimester, and like me, she opted to keep her baby while battling the disease. Unlike me her cancer didn't spread to her lymph nodes. She has been a source of strength, inspiration and information to me. When I first spoke to her she told me that after going through this, I will be superwoman and there won't be anything I can't do, there won't be anything that's overwhelming or daunting (except beating cancer). It is so wonderful to put a face to her voice and emails and best of all, I meet her gorgeous, perfectly healthy, happy little girl who just turned 6 months old. Susan and I could talk for hours about our experiences so far, our fear of the cancer returning, our babies. She shows me pictures of what she looked like pre-cancer. Her now dark brown, wavy short hair used to be straight and blond. I wonder what I'll look like when my new hair returns (which, thankfully, it has started to do! I look like G.I. Jane again. My hair is dark but too short to tell whether it's straight or curly. I can only tell that it's not as thick as before, although I've been told that will change.).
We spend a long time talking about how different our second pregnancies were/are from our first. With Miles, I knew his exact gestational age every day of my pregnancy. I knew how he was developing every day of my pregnancy. I knew when his bones were developing and when he was getting eyelashes, nails and hair. I thought about being pregnant every day. This time....not so much. I've had to ask Dr. Ottavi several times how far along I am in my pregnancy. I have no idea what Miracle Warrior is doing, I just know that he's busy and miraculous and kicking ass (often mine) every day. That's really all I care about. Miles' room was in perfect order a month before his due date. Miracle Warrior's room looks like a bomb of baby clothes exploded all over it. He has no furniture. And he probably won't until after he's born. And as much as I want to nest, and swear that our lives might come to an end if I don't have a chair for his room prior to his arrival, I know that he doesn't need furniture. He just needs me and Boris and some diapers.
I'm also using my time off to obsess about important things like new end tables for the bedroom, more pillows for my couches and art to hang on the bare walls of the house we've been living in for over a year. I'm driving Boris nuts with my daily emails and questions about decorating. I'm trying to convince him to let me buy an amazing orange leather chair that I "need." He swears it will go on sale and I explain to him that things I want never go on sale. A wise friend recently told me that if you have taste, what you want doesn't go on sale. So true. And so sad. I thought we were in an economic crisis but the stores that I want to buy things at apparently aren't suffering. At least not enough to discount the items I want. Sigh. Even though I can't buy anything I want at the moment, I'm enjoying browsing Elle Decor and Cisco Brothers instead of medical journals and cancer websites. It just feels so much better wondering which chair I should buy than which surgeon, chemo regimen, reconstruction technique, and the million other surreal choices I've made in the last few months.
Saturday, January 3, 2009
The Plastics
Let me begin by stating that I don't like implants. Neither does Boris. Actually, we hate them. Hate hate hate. Sorry if I'm offending anyone out there but I just don't get them. Boris and I are often horrified at what women do to their faces and bodies and don't understand how anyone finds it attractive. Urth Caffe is one of our favorite sightseeing venues. Women with lips the size of my head and breasts that defy the time/space continuum strut by and Boris and I just stare. We call them our girlfriends, and less frequently boyfriends. We sing it under our breath to each other "your girlfriend or your boyfriend," and as they walk by with their plasticky, taut faces, and basketball boobs, Boris and I only have to hum the tune to know what we're saying. I recently forced Boris to watch Desperate Housewives with me. In one scene, Nicolette Sheridan was wearing an incredibly revealing dress with a plunging neckline that revealed two perfectly hard, round balloon breasts with a huge space in the middle. "Oh my god. What if I look like that, Boris," I lament.
Friends trying to find some optimism about my situation often say things like "you're going to have the tatas of a 20 year old," or "you're going to have the perkiest boobs ever," or "when we're 50 and my breasts are in my belly button, yours will be perfect," etc. etc. etc. My boobs are already perky and yet they're still subject to gravity, which is just the way I like them. So it's with great sadness and trepidation that I start my research on reconstruction and my quest for a plastic surgeon.
After meeting with 8 plastic surgeons, yes 8, and reading everything I can find online (which I don't suggest because the web is full of horror stories and pictures), this is the world of reconstruction as I understand it. There are 2 main types of breast reconstruction: implants and flaps. Implants are, well, implants. There are 2 procedures that can be done: 1) expanders are placed under the chest muscle and slowly filled up with air until the chest muscle is sufficiently stretched, then the expanders are switched out for final implants or 2) the final implant can be placed on top of the chest muscle and covered with an acellular skin (skin culled from cadavers then washed until no cells remain). The latter is far easier and less painful, although there is no consensus as to which holds up better (no pun intended). Flaps are muscles taken from either the back (a latissimus flap), tummy, butt or inner thighs. All are complicated and lengthy surgeries and will require longer recoveries. Flaps created from the tummy risk loss of muscle use and flaps from the butt take almost 20 hours of surgery. The latissimus flap is the most common flap surgery for women who don't have enough stomach fat for 2 breasts, but the muscle isn't big enough to create a medium sized breast, so an implant is still needed. The theory is that the implant will tolerate radiation better because it will be placed underneath a larger, healthy muscle (as compared to the chest muscle which isn't very large). But all the risks of implants with radiation still apply.
All 8 plastic surgeons recommended something different for me. Of course. Why should this decision be any easier than any other I've had to make? They all agree though that I am too small for a tummy flap (which I promptly inform Boris of after each appointment) and that the butt/inner thigh flaps are probably far more complicated surgeries than I want. Plus, none of them actually do very many of them so I'd have to go to New Orleans to have the best doctors. I haven't been to New Orleans yet, but am not so interested in going to have multiple surgeries. Interestingly, the recommendations regarding implants versus a latissimus flap are split depending on the sex of the doctor, except for Dr. Slate. He is the only man who recommends the expander/implant surgery. All the others recommend the latissimus flap, the reason being that radiation and implants don't mix well. When an implant is radiated or inserted into radiated tissue, the chances of scar tissue contracting around the implant are incredibly high. The contracture can cause pain, asymmetry (the tissue becomes firmer and the implant rises up and becomes more round) and the breast to feel more firm (um, as if implants aren't firm enough already). I had never felt one before and cried when I did. These surgeons said that the latissimus flap is far more natural looking than an implant alone (although the procedure would still require an implant) and that I don't really need that particular back muscle. They all say that unless I'm a professional athlete, I won't miss it all and all minimize the giant scar the surgery will leave on my back by saying the scar is where my bra line is. But since they all tell me that I won't wear bras anymore, I'm not sure why that matters.
The women surgeons all tell me that in their business, it's just a matter of time before you think you are going to get breast cancer and if they had to have reconstruction, they would want the easiest procedure regardless of aesthetic. They all have families and children and think they need as many body parts as possible. So do I. One surgeon who I loved told me that when she goes to the beach, she doesn't want to worry about giant scars on her back (she wonders why the male plastic surgeons all say that the scars will be hidden by a bra or bikini when bras won't be necessary and most women who get breast cancer are past the bikini wearing age) and instead would like to focus on things normal women worry about, like fat thighs. Plus, while she may not be a professional athlete, she enjoys swimming and tennis with her friends and would be incredibly sad if she lost range of motion to do these things.
When I first learned that I had cancer and would lose both my breasts I wasn't going to meet with any plastic surgeons but Dr. Slate. His reputation is unbelievable and every doctor and woman I know recommended him. But when I learned I needed radiation, I decided I needed to meet with other doctors to see what my options were. Implants are bad enough when they look good but perfectly round, possibly asymmetrical grapefruits on my chest is more than I can handle. Or so I thought. My first few consultations were so depressing. The first doctor was a wealth of information and was very honest about all the risks each procedure entails. He showed me endless photos - good and bad - of his work and I cried as he flipped through the pages. He also brought me into one of the examination rooms to meet a woman who had a latissimus flap procedure over a year ago and just had her nipples put on. Her back scars were gnarly and her nipples were terrifying. They looked 12 feet long. Like little penises on her breasts. Seriously. I didn't want to be rude and start sobbing in front of her so I smiled and thanked her for letting me see her breasts, left the room and became hysterical. The doctor was so nice and explained that the nipples shrink by about 90% and reminded me that fresh surgery is never pretty. But holy fucking shit. He recommended a latissimus flap for me and said that he would place a slightly expanded expander in me at the time of the mastectomy, I would have radiation, then he would do the flap and replace the expander with an implant.
The second doctor couldn't stop talking. Although I told him I was aware of all of my options and only wanted to hear what he would recommend for me, he felt it necessary to give a lecture on the history of breast reconstruction. I was there for hours and wanted to slit my wrists. He discussed all of the trials and tribulations of implants and their history with the FDA. His conclusion: since the FDA says they're safe, they are. I had to tell him that I realize I have few options, but the FDA has a pretty fucked up history when it comes to womens' health, so their blessing means shit to me. He recommended that I have my mastectomies, radiate the chest wall totally flat (what!? - as if a double mastectomy isn't traumatic enough, he wants me to go from a D-cup to totally flat and stay flat for months!?) wait a few months, then do the latissimus flap procedure. Just in case the consultation wasn't annoying enough, on my way out, his receptionist looked at me and asked if it was "okay" for me to be pregnant and have cancer. Instead of saying "no bitch, it's not okay but I am and I do," I tell her that I'm not a doctor, but if she'd like more information from my oncologist, I'm happy to give her the number. I totally get that very few people know you can be pregnant and go through chemo and that if I'm going to be the poster child for pregnant women with cancer I need to be ready to dole out information, but do you have to ask the question in the dumbest way possible?
The third surgeon was brief and to the point. He would do the latissimus flap procedure at the time of my mastectomy. That means I would radiate healthy muscle and tissue which seems crazy to me. I am not a doctor, but why would I do that? What happens if it goes badly? I only have 1 latissimus muscle on each side, so I would have no other options. I vote no.
I decide to meet with Dr. Slate because I can't take all the flap recommendations. Plus, he's who I wanted to use initially and recently I have met several young women who used him even though they were having radiation. They are all really pleased and 2 have completed radiation and the tatas still look fantastic. Dr. Slate is prompt and wonderful. He tells me that he's going to grab my file and then we can talk for as long as we need. He means it because we talk for almost 3 hours. I ask him 98798733 questions which he answers happily and doesn't seem irritated in the least. He explains that he does flap procedures but only when the expander/implant procedure fails. He explains to me that his practice has sadly gotten younger and younger and that as active women with families, why would we remove body parts as a first option? "I know lots of excellent surgeons who recommend flaps when radiation is needed," he says, "but in my opinion they are very cavalier about the recovery and the necessity of the muscles they are removing. If you are unhappy with the implant procedure after radiation, you can always have a flap procedure. But I would make it a last resort, not a first." I agree. He also tells me that of his patients who have radiation, the vast majority aren't unhappy enough with the reconstruction results to change anything. I ask him about the cost of the procedure even though I already know he's a fortune. In total, it will cost me $25,000. He doesn't take insurance. None of the good plastic surgeons do. We hug as I leave and I'm convinced that I'm done with my search. I still have 1 more consultation set up, but my mind is already made up. I'll end up where I started - with Dr. Slate.
Of course I should never think I've made up my mind because something always changes. The next surgeon I meet with is the person who told me about the implant procedure that doesn't use expanders. She's also wonderful and concise and tells me that if she were me, this is what she would do. She would put in final implants at the time of the mastectomies. Part of the implant is covered with the acellular skin and part with the pectoral muscle. Then I would radiate the final implant. This spares me the pain of expanders and multiple surgeries. Sounds good to me. She explains that it's a not procedure routinely performed mostly because it hasn't been the standard of care and because there is a higher chance of infection. I will have to be "watched like a hawk" in the first few weeks after the surgery to make sure the incisions are clean. So now I'm thinking I will use her and do the final implant procedure. Before I leave, I meet with her patient care coordinator who gives me the price of surgery. $8,000. Hmmm..... Is she K-Mart? Her coordinator also tells me that given her experience with Blue Shield (my insurance provider) I will get $750-$1,500 from them. I think that has to be illegal. $750? The parts have to be more than that. I can't imagine any doctor in California doing the procedure for that amount of money. At least I know why no good surgeon takes insurance. It's tragic that women either have to go bankrupt trying to get decent boobs after battling cancer or have a dentist who accepts insurance and does plastic surgery on the side for $750 perform their surgery.
I call Dr. Funk and tell her that I'm confused. I tell her about my most recent consultation and ask her what her thoughts are about the surgeon and the final implant procedure. She tells me she thinks the procedure is a good one, although it's risky with radiation. But, she tells me that she can't let me use the surgeon because her work is inconsistent. I love her for being so honest. She tells me that I should meet with other plastic surgeons who might perform the final implant surgery. She recommends several plastic surgeons who primarily work out of St. John's who have great reputations, but she has no firsthand experience with them. Fuck. One of them is the surgeon who my mom used a million years ago when the tummy flap was first introduced. The quest continues.
So do the mixed opinions. I meet with 3 more plastic surgeons and speak to 2 more on the phone. Only 1 recommends the final implant surgery. The rest recommend expanders/implants. Some believe using the acellular skin is risky and offers little benefit unless my skin/chest muscle is thin while others tell me that it will help create a more natural looking breast, even in the expander/implant procedure. The last surgeon I meet with hasn't performed any reconstructive surgery since his training in medical school. I had spoken with his assistant and made it clear what procedure I was interested in and that I was especially interested in seeing pictures of women who had received the final implant surgery with radiation. I have no idea why she let me make the appointment. I'm totally over this. He did mention that he makes nipples from scar tissue as opposed to skin from the labia which many plastic surgeons use. What!? I almost vomit. My vajajay is painin' just from the thought. No one except Boris is going near the vajajay. Holy shit. I call Dr. Slate and the surgeon who my mom used - the 2 surgeons I'm deciding between and ask how they make nipples. Scar tissue for both. Phew.
I email a past client who is a plastic surgery fellow in Texas. He's been a wealth of information and referrals throughout my cancer experience. I ask him his opinion about my options and surgeons. He sends me an incredibly detailed and helpful email. It ends with the following paragraph:
Smart man.
But I can't go boobless for that long and I want to hope that I'll be satisfied with the easiest procedure. Since I know so many women who have used Dr. Slate, I decide to go with him. I have seen his work firsthand. He didn't introduce me to any of the women so I'm not only seeing the patients or pictures that he wants me to see. They are all happy. Even those who have had radiation (although it can take up to 2 years for the side effects of radiation to materialize). Plus, I loved him.
So 8 consultations and way too many hours, weeks, months, later...I arrive at my decision. That was the last big one I had to make. Finally.
After meeting with 8 plastic surgeons, yes 8, and reading everything I can find online (which I don't suggest because the web is full of horror stories and pictures), this is the world of reconstruction as I understand it. There are 2 main types of breast reconstruction: implants and flaps. Implants are, well, implants. There are 2 procedures that can be done: 1) expanders are placed under the chest muscle and slowly filled up with air until the chest muscle is sufficiently stretched, then the expanders are switched out for final implants or 2) the final implant can be placed on top of the chest muscle and covered with an acellular skin (skin culled from cadavers then washed until no cells remain). The latter is far easier and less painful, although there is no consensus as to which holds up better (no pun intended). Flaps are muscles taken from either the back (a latissimus flap), tummy, butt or inner thighs. All are complicated and lengthy surgeries and will require longer recoveries. Flaps created from the tummy risk loss of muscle use and flaps from the butt take almost 20 hours of surgery. The latissimus flap is the most common flap surgery for women who don't have enough stomach fat for 2 breasts, but the muscle isn't big enough to create a medium sized breast, so an implant is still needed. The theory is that the implant will tolerate radiation better because it will be placed underneath a larger, healthy muscle (as compared to the chest muscle which isn't very large). But all the risks of implants with radiation still apply.
All 8 plastic surgeons recommended something different for me. Of course. Why should this decision be any easier than any other I've had to make? They all agree though that I am too small for a tummy flap (which I promptly inform Boris of after each appointment) and that the butt/inner thigh flaps are probably far more complicated surgeries than I want. Plus, none of them actually do very many of them so I'd have to go to New Orleans to have the best doctors. I haven't been to New Orleans yet, but am not so interested in going to have multiple surgeries. Interestingly, the recommendations regarding implants versus a latissimus flap are split depending on the sex of the doctor, except for Dr. Slate. He is the only man who recommends the expander/implant surgery. All the others recommend the latissimus flap, the reason being that radiation and implants don't mix well. When an implant is radiated or inserted into radiated tissue, the chances of scar tissue contracting around the implant are incredibly high. The contracture can cause pain, asymmetry (the tissue becomes firmer and the implant rises up and becomes more round) and the breast to feel more firm (um, as if implants aren't firm enough already). I had never felt one before and cried when I did. These surgeons said that the latissimus flap is far more natural looking than an implant alone (although the procedure would still require an implant) and that I don't really need that particular back muscle. They all say that unless I'm a professional athlete, I won't miss it all and all minimize the giant scar the surgery will leave on my back by saying the scar is where my bra line is. But since they all tell me that I won't wear bras anymore, I'm not sure why that matters.
The women surgeons all tell me that in their business, it's just a matter of time before you think you are going to get breast cancer and if they had to have reconstruction, they would want the easiest procedure regardless of aesthetic. They all have families and children and think they need as many body parts as possible. So do I. One surgeon who I loved told me that when she goes to the beach, she doesn't want to worry about giant scars on her back (she wonders why the male plastic surgeons all say that the scars will be hidden by a bra or bikini when bras won't be necessary and most women who get breast cancer are past the bikini wearing age) and instead would like to focus on things normal women worry about, like fat thighs. Plus, while she may not be a professional athlete, she enjoys swimming and tennis with her friends and would be incredibly sad if she lost range of motion to do these things.
When I first learned that I had cancer and would lose both my breasts I wasn't going to meet with any plastic surgeons but Dr. Slate. His reputation is unbelievable and every doctor and woman I know recommended him. But when I learned I needed radiation, I decided I needed to meet with other doctors to see what my options were. Implants are bad enough when they look good but perfectly round, possibly asymmetrical grapefruits on my chest is more than I can handle. Or so I thought. My first few consultations were so depressing. The first doctor was a wealth of information and was very honest about all the risks each procedure entails. He showed me endless photos - good and bad - of his work and I cried as he flipped through the pages. He also brought me into one of the examination rooms to meet a woman who had a latissimus flap procedure over a year ago and just had her nipples put on. Her back scars were gnarly and her nipples were terrifying. They looked 12 feet long. Like little penises on her breasts. Seriously. I didn't want to be rude and start sobbing in front of her so I smiled and thanked her for letting me see her breasts, left the room and became hysterical. The doctor was so nice and explained that the nipples shrink by about 90% and reminded me that fresh surgery is never pretty. But holy fucking shit. He recommended a latissimus flap for me and said that he would place a slightly expanded expander in me at the time of the mastectomy, I would have radiation, then he would do the flap and replace the expander with an implant.
The second doctor couldn't stop talking. Although I told him I was aware of all of my options and only wanted to hear what he would recommend for me, he felt it necessary to give a lecture on the history of breast reconstruction. I was there for hours and wanted to slit my wrists. He discussed all of the trials and tribulations of implants and their history with the FDA. His conclusion: since the FDA says they're safe, they are. I had to tell him that I realize I have few options, but the FDA has a pretty fucked up history when it comes to womens' health, so their blessing means shit to me. He recommended that I have my mastectomies, radiate the chest wall totally flat (what!? - as if a double mastectomy isn't traumatic enough, he wants me to go from a D-cup to totally flat and stay flat for months!?) wait a few months, then do the latissimus flap procedure. Just in case the consultation wasn't annoying enough, on my way out, his receptionist looked at me and asked if it was "okay" for me to be pregnant and have cancer. Instead of saying "no bitch, it's not okay but I am and I do," I tell her that I'm not a doctor, but if she'd like more information from my oncologist, I'm happy to give her the number. I totally get that very few people know you can be pregnant and go through chemo and that if I'm going to be the poster child for pregnant women with cancer I need to be ready to dole out information, but do you have to ask the question in the dumbest way possible?
The third surgeon was brief and to the point. He would do the latissimus flap procedure at the time of my mastectomy. That means I would radiate healthy muscle and tissue which seems crazy to me. I am not a doctor, but why would I do that? What happens if it goes badly? I only have 1 latissimus muscle on each side, so I would have no other options. I vote no.
I decide to meet with Dr. Slate because I can't take all the flap recommendations. Plus, he's who I wanted to use initially and recently I have met several young women who used him even though they were having radiation. They are all really pleased and 2 have completed radiation and the tatas still look fantastic. Dr. Slate is prompt and wonderful. He tells me that he's going to grab my file and then we can talk for as long as we need. He means it because we talk for almost 3 hours. I ask him 98798733 questions which he answers happily and doesn't seem irritated in the least. He explains that he does flap procedures but only when the expander/implant procedure fails. He explains to me that his practice has sadly gotten younger and younger and that as active women with families, why would we remove body parts as a first option? "I know lots of excellent surgeons who recommend flaps when radiation is needed," he says, "but in my opinion they are very cavalier about the recovery and the necessity of the muscles they are removing. If you are unhappy with the implant procedure after radiation, you can always have a flap procedure. But I would make it a last resort, not a first." I agree. He also tells me that of his patients who have radiation, the vast majority aren't unhappy enough with the reconstruction results to change anything. I ask him about the cost of the procedure even though I already know he's a fortune. In total, it will cost me $25,000. He doesn't take insurance. None of the good plastic surgeons do. We hug as I leave and I'm convinced that I'm done with my search. I still have 1 more consultation set up, but my mind is already made up. I'll end up where I started - with Dr. Slate.
Of course I should never think I've made up my mind because something always changes. The next surgeon I meet with is the person who told me about the implant procedure that doesn't use expanders. She's also wonderful and concise and tells me that if she were me, this is what she would do. She would put in final implants at the time of the mastectomies. Part of the implant is covered with the acellular skin and part with the pectoral muscle. Then I would radiate the final implant. This spares me the pain of expanders and multiple surgeries. Sounds good to me. She explains that it's a not procedure routinely performed mostly because it hasn't been the standard of care and because there is a higher chance of infection. I will have to be "watched like a hawk" in the first few weeks after the surgery to make sure the incisions are clean. So now I'm thinking I will use her and do the final implant procedure. Before I leave, I meet with her patient care coordinator who gives me the price of surgery. $8,000. Hmmm..... Is she K-Mart? Her coordinator also tells me that given her experience with Blue Shield (my insurance provider) I will get $750-$1,500 from them. I think that has to be illegal. $750? The parts have to be more than that. I can't imagine any doctor in California doing the procedure for that amount of money. At least I know why no good surgeon takes insurance. It's tragic that women either have to go bankrupt trying to get decent boobs after battling cancer or have a dentist who accepts insurance and does plastic surgery on the side for $750 perform their surgery.
I call Dr. Funk and tell her that I'm confused. I tell her about my most recent consultation and ask her what her thoughts are about the surgeon and the final implant procedure. She tells me she thinks the procedure is a good one, although it's risky with radiation. But, she tells me that she can't let me use the surgeon because her work is inconsistent. I love her for being so honest. She tells me that I should meet with other plastic surgeons who might perform the final implant surgery. She recommends several plastic surgeons who primarily work out of St. John's who have great reputations, but she has no firsthand experience with them. Fuck. One of them is the surgeon who my mom used a million years ago when the tummy flap was first introduced. The quest continues.
So do the mixed opinions. I meet with 3 more plastic surgeons and speak to 2 more on the phone. Only 1 recommends the final implant surgery. The rest recommend expanders/implants. Some believe using the acellular skin is risky and offers little benefit unless my skin/chest muscle is thin while others tell me that it will help create a more natural looking breast, even in the expander/implant procedure. The last surgeon I meet with hasn't performed any reconstructive surgery since his training in medical school. I had spoken with his assistant and made it clear what procedure I was interested in and that I was especially interested in seeing pictures of women who had received the final implant surgery with radiation. I have no idea why she let me make the appointment. I'm totally over this. He did mention that he makes nipples from scar tissue as opposed to skin from the labia which many plastic surgeons use. What!? I almost vomit. My vajajay is painin' just from the thought. No one except Boris is going near the vajajay. Holy shit. I call Dr. Slate and the surgeon who my mom used - the 2 surgeons I'm deciding between and ask how they make nipples. Scar tissue for both. Phew.
I email a past client who is a plastic surgery fellow in Texas. He's been a wealth of information and referrals throughout my cancer experience. I ask him his opinion about my options and surgeons. He sends me an incredibly detailed and helpful email. It ends with the following paragraph:
If you were my patient I'd tell you to stop worrying about good boobies and concentrate on the fact that the most important thing is to rid yourself of the cancer and minimize the chances of recurrence. You can always buy yourself good boobies later. I would tell you to get the mastectomies and not have immediate reconstruction. Go through the radiation, and see what happens. In the interim, wear a prosthesis when going out in public. Then at a later date I'd book you for bilateral latissimus flap reconstruction. You'd pay only for that operation and the minor nipple reconstruction/tattooing to follow. But this is only the opinion of a first year Fellow in plastic surgery. I may change my tune as I gain more experience! I'm only proceeding in terms of the standard of care with regard to what I've seen/read so far, and the data that's been presented at meetings. Most important thing to remember is that the foremost issue is the oncologic one. The reconstruction can always wait. Concentrate on taking care of babies first!
Smart man.
But I can't go boobless for that long and I want to hope that I'll be satisfied with the easiest procedure. Since I know so many women who have used Dr. Slate, I decide to go with him. I have seen his work firsthand. He didn't introduce me to any of the women so I'm not only seeing the patients or pictures that he wants me to see. They are all happy. Even those who have had radiation (although it can take up to 2 years for the side effects of radiation to materialize). Plus, I loved him.
So 8 consultations and way too many hours, weeks, months, later...I arrive at my decision. That was the last big one I had to make. Finally.
Subscribe to:
Posts (Atom)