The twins will be here tomorrow!
Tomorrow morning I have my tissue expander/implant exchange... as well as my oophorectomy. I am so excited for this surgery. This afternoon I had my last meal. I just finished taking the magnesium citrate which will help me clear my system out (hint... go for the flavored stuff. The cherry wasn't bad.). For the next 6 hours or so, I will be on a liquid diet. Luckily I gorged on Taco Bell! Yummy. If I am not going to be able to eat for awhile, I want it to be full of calories and not good for me. Hee hee!
Tonight in order to prep for my surgery, I have to shower with the soap that surgeons use to disinfect their hands. In addition, I have to shower with the same stuff tomorrow morning. My wake up call... around 4a. I have to be at the hospital at 5.30. Am I nervous? At times I am. But I am excited... new forever-perky-boobs and permanent birth control. Can't beat that, right?
Dr. Thakar is going to use new implants. The implants are called cohesive silicone implants. They are nicknamed "gummy bear" implants. Europe has been using the implants for awhile now. However, they were just approved in the last few years here in the U.S. CLICK HERE for more information on the implants. Dr. T is going to put them in me and see how they look. If they look good, there they will stay. If they don't look right, we'll go to the original silicone implants. The cohesive ones are great because they feel like breast tissue. There's no liquid inside the implant to move around. She says that it looks better on women who are think like me. There's less "rippling." They also last longer. The only bad thing: she'll put in a drain if she uses the cohesive implants. So I hope that I come out of surgery with drains. :)
After my surgery, I will wake up with nothing around me... meaning I won't be bandaged up and I won't have a bra on. Nice.
Nothing else to report really. I just can't wait to feel a little more comfortable. I am looking forward to having the tissue expanders out of me. Until next time...
Showing posts with label reconstruction. Show all posts
Showing posts with label reconstruction. Show all posts
Thursday, May 23, 2013
Monday, February 11, 2013
Grrr.... lymphedema
Grrr... I am so mad. I thought that maybe God would throw me a bone. But instead He teased me with it. Now I've been diagnosed with lymphedema by my primary physician. I've been referred to a lymphedema specialist. I am now waiting for them to call me. I'm upset. I am mad. I am pissed. I don't know why. It's not my fault that I have swelling in my hand. I guess I am mad because I didn't catch the cancer early enough. If I had caught it months earlier, then maybe it wouldn't have travelled to my lymph nodes and I wouldn't have had an axillary dissection. Grrr, still I'm mad. This is going to be chronic. I was being so careful too. But my hand is swollen. I try and kid myself that it isn't, but it is. You can see it mostly around my knuckles.
I won't die from lymphedema, but it can be uncomfortable. I'll have to most likely wear compression sleeves when I fly and do exercises... I think that I have caught it early enough. I just hope that I can get in sooner rather than later so it can be reversed. :)
My doctor is going to call my oncologist to see if it could be a blood clot. He says that sometimes it could be a clot. So I may have to get an u/s of my veins. I doubt that I have a blood clot. There's no pain or shortness of breath. Hmmm...
Other than that... not much to report. I will be calling for my reconstruction appointment in March. Dr. Thakar had me down for a March surgery. I told the scheduler that I was going on vacation and didn't want to do it until afterwards. So the April schedule opens in March. Plus I need to find a new gynoc for the oophorectomy since I want to do both of them at the same time. So things are moving foward....
I won't die from lymphedema, but it can be uncomfortable. I'll have to most likely wear compression sleeves when I fly and do exercises... I think that I have caught it early enough. I just hope that I can get in sooner rather than later so it can be reversed. :)
My doctor is going to call my oncologist to see if it could be a blood clot. He says that sometimes it could be a clot. So I may have to get an u/s of my veins. I doubt that I have a blood clot. There's no pain or shortness of breath. Hmmm...
Other than that... not much to report. I will be calling for my reconstruction appointment in March. Dr. Thakar had me down for a March surgery. I told the scheduler that I was going on vacation and didn't want to do it until afterwards. So the April schedule opens in March. Plus I need to find a new gynoc for the oophorectomy since I want to do both of them at the same time. So things are moving foward....
Friday, November 9, 2012
Day 301 - I understand
Sorry for my last post. I was a bit upset and irritated at my situation for the first time since I learned of my diagnosis. I really wanted to get my whole ordeal over and done with this year. First for the sake of chalking off 2012 and starting 2013 fresh and new and second so I don't have to go through a new deductible and out of pocket max for insurance. So when I learned that it wouldn't be until March of 2013, I was a bit pissed. I had high hopes for this year.
So it looks like I will be getting my reconstruction surgery in March or April. I was also upset because my cruise is in March and I was hoping it would all be done and over by then. So now I am wondering if it would be good to get my surgery sometime in February or just wait until I get back. Either way, I'm getting boobs! LOL.
I was also a little irritated because the medical assistant also works with me at Xerox. She doesn't like me... and we had a little kerfluffel. In any case, she said that she won't say anything about my appointment outside of the office. I said "okay". Well, no, she can't say anything. That would be SOO WRONG. In any case, I was ticked that she felt that she had to say something like that. Whatever. I'm over it. And I saw her today. In fact she was sitting right behind me.
On Wednesday I had my follow up with Dr. Marquez, my radiation oncologist. She is the one who shed light on why they are waiting for the next surgery. First off, they want my skin to be normal color. Right now it looks like I have a tan. Next they want to make sure that the elasticity of my skin remains good. They want pliable skin. I understand now. Dr. Marquez said I wouldn't be ready until next year. And since I know what they're looking for, I am okay with it. Really I am. It just took me a night to stew over it. She also suggested that I do the oophorectomy at the same time. I agree.
Dr. Thakar, the plastic surgeon, gave me a prescription for some lotion to rub on my boob and under arm. I took it to the pharmacy. My insurance didn't cover it... $93. I said, no thanks. They finally got it to $30. I said I'll try it for $30. It's 5.4 ounces... and get this... it's a skin bleacher. Ha. I wonder if Michael Jackson used it all over his body.
On an unrelated note... it's open enrollment at work. In order to get a discount for my medical benefits (up to $600/year), I have to have bloodwork done. So yesterday I went in to Quest Diagnostics to get my blood drawn. After three pokes they said that they were unable to get my blood. I told them that I had small veins, pointed to a few places they could poke me... but they never listened. Irritating. So then I called my doctor's office and got an appointment with my physician for today. I went in... and it took two pokes and two different people to get my blood. They told me that instead of using the vacuum syringe thing, it's better for me to just use a regular syringe to extract the blood. The vacuum has such a strong suction that it blows out the vein. Aha! So they got my blood they needed, I got my flu shot and got to see my doctor. It's the first time that I have seen him since January. I've seen his wife more than him. So we chatted a bit. He said that he wished he knew me better because I told him that this year has gone by soo incredibly fast. He said that's good because it's all dependent on attitude. I also got my flu shot! Yay!
Oh yes, and how could I fail to forget... I got to see Dan on Wednesday. He gave me a great big hug and asked how I was doing. He said that we need to go out and have drinks. I told him I want a ride in his boat. He said no problem. In any case... he had to run and work on a patient, so I didn't get too much time to chat with him. He did say he'd be upset if I didn't stop and say hi. :)
So it looks like I will be getting my reconstruction surgery in March or April. I was also upset because my cruise is in March and I was hoping it would all be done and over by then. So now I am wondering if it would be good to get my surgery sometime in February or just wait until I get back. Either way, I'm getting boobs! LOL.
I was also a little irritated because the medical assistant also works with me at Xerox. She doesn't like me... and we had a little kerfluffel. In any case, she said that she won't say anything about my appointment outside of the office. I said "okay". Well, no, she can't say anything. That would be SOO WRONG. In any case, I was ticked that she felt that she had to say something like that. Whatever. I'm over it. And I saw her today. In fact she was sitting right behind me.
On Wednesday I had my follow up with Dr. Marquez, my radiation oncologist. She is the one who shed light on why they are waiting for the next surgery. First off, they want my skin to be normal color. Right now it looks like I have a tan. Next they want to make sure that the elasticity of my skin remains good. They want pliable skin. I understand now. Dr. Marquez said I wouldn't be ready until next year. And since I know what they're looking for, I am okay with it. Really I am. It just took me a night to stew over it. She also suggested that I do the oophorectomy at the same time. I agree.
Dr. Thakar, the plastic surgeon, gave me a prescription for some lotion to rub on my boob and under arm. I took it to the pharmacy. My insurance didn't cover it... $93. I said, no thanks. They finally got it to $30. I said I'll try it for $30. It's 5.4 ounces... and get this... it's a skin bleacher. Ha. I wonder if Michael Jackson used it all over his body.
On an unrelated note... it's open enrollment at work. In order to get a discount for my medical benefits (up to $600/year), I have to have bloodwork done. So yesterday I went in to Quest Diagnostics to get my blood drawn. After three pokes they said that they were unable to get my blood. I told them that I had small veins, pointed to a few places they could poke me... but they never listened. Irritating. So then I called my doctor's office and got an appointment with my physician for today. I went in... and it took two pokes and two different people to get my blood. They told me that instead of using the vacuum syringe thing, it's better for me to just use a regular syringe to extract the blood. The vacuum has such a strong suction that it blows out the vein. Aha! So they got my blood they needed, I got my flu shot and got to see my doctor. It's the first time that I have seen him since January. I've seen his wife more than him. So we chatted a bit. He said that he wished he knew me better because I told him that this year has gone by soo incredibly fast. He said that's good because it's all dependent on attitude. I also got my flu shot! Yay!
Oh yes, and how could I fail to forget... I got to see Dan on Wednesday. He gave me a great big hug and asked how I was doing. He said that we need to go out and have drinks. I told him I want a ride in his boat. He said no problem. In any case... he had to run and work on a patient, so I didn't get too much time to chat with him. He did say he'd be upset if I didn't stop and say hi. :)
Tuesday, July 24, 2012
Day 192 - How much does a double mastectomy cost?
I really don't have too much to post today... rather, there's no agenda. I've got dinner all made. I made an easy bake lasagne... where one does NOT have to cook the noodles before hand. :) Simplicity is key. As of right now, the girls are quiet and playing in the living room, which is also called the playroom. The house is quiet and there's no crying, screaming or yelling. Kind of nice!
Oh, I thought up of an agenda or a subject for this post... how about... how much it costs for a mastectomy? I've got most of the bills for my bilateral mastectomy. The numbers are mind blowing. I am just happy that I don't have to pay a cent of it. So here goes...
Pre-op appointment for Dr. Naik - $341.00
Pre-op appoitment for Dr. Thaker - $254.00
Labs and x-rays before surgery - $1165.00
Radiologist to read the x-rays - $27.00
Pre-anesthesia work-up - $436.00
Dr. Naik for bilateral mastectomy - $9195.75
Pathology - $1140.00
Dr. Thakar for reconstruction - $6921.00
Tissue expanders - $1296.00
Anesthesia - $2281.50
That's a total of $23,057.55! And that total doesn't even include the hospital stay which was 3.5 days... but I am sure they are going to charge 4 days worth. I am hoping that each day they called Cigna to make sure I was covered.
Another interesting fact is that my PET/CT scan cost $8721.00. Normally (under my plan) a secondary scan is not covered. And at first my plan denied the secondary scan and sent me a pamphlet of why it wasn't covered. However, in the paperwork, it stated that a secondary scan can be done if surgery was not an option to figure out restaging following treatment. That was me all the way because some of my cancer was considered non-surgerical (supraclavicular node). So a secondary letter was sent to me stating that my PET/CT scan was covered. All the hoops that one needs to jump through. Makes your mind go numb.
Here's another break down:
January - $20,910.31
February - $29,072.41
March - $30,749.39
April - $24,831.75
May - $19,133.86
I have been billed approximately $147,160 since the start of this cancer thing (through June). Interesting, huh... how the bills just continue to add up. That would pay off a nice portion of my mortgage. Ha! Thank goodness, I don't have to pay that much. I would be bankrupt if I had to.
Well that's making my head spin.
Oh, here's the recipe to the easy lasagne:
1lb of ground beef
26oz of your favorite spaghetti sauce
15oz ricotta cheese
2cups shredded mozzerella cheese
9 UNCOOKED lasagne noodles
2/3 cup of water
Cook the meat until brown (season if you wish, but the sauce should have seasoning. Sometimes I add more garlic, parsley and oregano). Add 20oz of sauce to the meat and stir. Put a few spoonfuls down in a rectangular baking dish (7"x11") so it covers the bottom. Put 3 uncooked lasagne noodles on top. Spread half of the ricotta cheese on the noodles. Top with 3/4 cup of shredded cheese. Add half of meat sauce mixture. Repeat - 3 uncooked noodles, rest of ricotta cheese, 3/4 shredded cheese and rest of meat sauce. Layer once more with last 3 uncooked noodles. With remaining 6oz of sauce, pour over noodles. Add about 2/3 cup of water to the baking dish, carefully pouring on the side of the dish (not over the actual lasagne). Cover tightly with aluminum foil. Bake 375 for 45 minutes. Remove foil, add on last of the cheese and bake for 10 more minutes. Let stand about 5-10 minutes (so the lasagne won't fall apart). Cut and serve... Makes about 6 good portions.
Oh, I thought up of an agenda or a subject for this post... how about... how much it costs for a mastectomy? I've got most of the bills for my bilateral mastectomy. The numbers are mind blowing. I am just happy that I don't have to pay a cent of it. So here goes...
Pre-op appointment for Dr. Naik - $341.00
Pre-op appoitment for Dr. Thaker - $254.00
Labs and x-rays before surgery - $1165.00
Radiologist to read the x-rays - $27.00
Pre-anesthesia work-up - $436.00
Dr. Naik for bilateral mastectomy - $9195.75
Pathology - $1140.00
Dr. Thakar for reconstruction - $6921.00
Tissue expanders - $1296.00
Anesthesia - $2281.50
That's a total of $23,057.55! And that total doesn't even include the hospital stay which was 3.5 days... but I am sure they are going to charge 4 days worth. I am hoping that each day they called Cigna to make sure I was covered.
Another interesting fact is that my PET/CT scan cost $8721.00. Normally (under my plan) a secondary scan is not covered. And at first my plan denied the secondary scan and sent me a pamphlet of why it wasn't covered. However, in the paperwork, it stated that a secondary scan can be done if surgery was not an option to figure out restaging following treatment. That was me all the way because some of my cancer was considered non-surgerical (supraclavicular node). So a secondary letter was sent to me stating that my PET/CT scan was covered. All the hoops that one needs to jump through. Makes your mind go numb.
Here's another break down:
January - $20,910.31
February - $29,072.41
March - $30,749.39
April - $24,831.75
May - $19,133.86
I have been billed approximately $147,160 since the start of this cancer thing (through June). Interesting, huh... how the bills just continue to add up. That would pay off a nice portion of my mortgage. Ha! Thank goodness, I don't have to pay that much. I would be bankrupt if I had to.
Well that's making my head spin.
Oh, here's the recipe to the easy lasagne:
1lb of ground beef
26oz of your favorite spaghetti sauce
15oz ricotta cheese
2cups shredded mozzerella cheese
9 UNCOOKED lasagne noodles
2/3 cup of water
Cook the meat until brown (season if you wish, but the sauce should have seasoning. Sometimes I add more garlic, parsley and oregano). Add 20oz of sauce to the meat and stir. Put a few spoonfuls down in a rectangular baking dish (7"x11") so it covers the bottom. Put 3 uncooked lasagne noodles on top. Spread half of the ricotta cheese on the noodles. Top with 3/4 cup of shredded cheese. Add half of meat sauce mixture. Repeat - 3 uncooked noodles, rest of ricotta cheese, 3/4 shredded cheese and rest of meat sauce. Layer once more with last 3 uncooked noodles. With remaining 6oz of sauce, pour over noodles. Add about 2/3 cup of water to the baking dish, carefully pouring on the side of the dish (not over the actual lasagne). Cover tightly with aluminum foil. Bake 375 for 45 minutes. Remove foil, add on last of the cheese and bake for 10 more minutes. Let stand about 5-10 minutes (so the lasagne won't fall apart). Cut and serve... Makes about 6 good portions.
Sunday, June 3, 2012
Day 141 - Back to the beginning... sigh
It's back to the beginning. I got a call from the social worker at OHSU on Thursday delivering some bad news for oncology patients... or at least some of them. I was delivered the message that my oncologist was leaving the OHSU practice. That means Dr. Luoh is no longer my doctor! I am so bummed. Turns out he's not going far. In fact he's moving back to the Veteran's Hospital. I know that he's been "moonlighting" over there. So on Friday, I received a letter in the mail stating that Dr. Luoh was leaving effective July 1. It also states that Dr. Luoh was on "loan" to OHSU and will now be going back to the VA hospital full time. When I was talking with the social worker on the phone the previous day, she said that his nurse was in shock. I told her that while I knew his heart belonged to the VA, I was soooo happy that this didn't happen during my chemo sucky treatments. It would have devastated me to have to change doctors in mid process. I sure don't envy anyone going through chemo now and having to also change doctors. While I was supposed to pick up with him in September for hormone therapy, it's not as intense as the chemo part. The letter included a statement from the head of the department and then a letter from Dr. Luoh. His part went:
My Dear Patients:
It has been my great honor to work with you at the Oregon Health & Science University Breast Clinic at the Center for Health and Healing. Thank you for the trust that you hae placed in me and my staff at the Knight Cancer Institute. I am a faculty member at OHSU. Few of you know that I am actually a full time Medical Oncologist at the Portland VA Medical Center. I have been offering you my care as an exchange of service between OHSU and the VA. As of July 1, 2012 my work at the outpatient breast clinic at the Center for Health and Healing will end and I will shift my full time responsibility back to the VA Medical Center.
I am grateful for the opportunities to work with you. A group of respected medical oncologists have been assembled to take over your care. They will continue the journey that you and I charted together. You are in my thoughts and I will cheer you on in your fight against breast cancer.
Makes me want to enlist and then get out so I can be a patient at the VA! Ha! It was a nice little note he put in and goes to show he's a great doct. or. So now I have to pick a new doctor. - so it's like I am starting all over again. Fun times.
Tomorrow I have some pre-op tests and I have my pre-op appointment with Dr. Thaker, the reconstructive surgeon. I can't believe in less that two weeks I'll have my surgery and then I'll be rid of this ridiculous cancer. Well, I hope so... meaning that the chemo-sucky got all the other "floating" matter circulating in my body. It's surgery time... then recovery time and then radiation time.
While I am not looking forward to the surgery, I am looking forward to it. I want to be healthy again... but I wish it didn't have to come to a surgery taking away my breasts. I'm not upset or anything... but it just sucks. But in the end I will be cancer-free and I will have bigger boobs. I was trying on some bras this morning and thinking... I won't need these anymore in less than 14 days! Ha!
My Dear Patients:
It has been my great honor to work with you at the Oregon Health & Science University Breast Clinic at the Center for Health and Healing. Thank you for the trust that you hae placed in me and my staff at the Knight Cancer Institute. I am a faculty member at OHSU. Few of you know that I am actually a full time Medical Oncologist at the Portland VA Medical Center. I have been offering you my care as an exchange of service between OHSU and the VA. As of July 1, 2012 my work at the outpatient breast clinic at the Center for Health and Healing will end and I will shift my full time responsibility back to the VA Medical Center.
I am grateful for the opportunities to work with you. A group of respected medical oncologists have been assembled to take over your care. They will continue the journey that you and I charted together. You are in my thoughts and I will cheer you on in your fight against breast cancer.
Makes me want to enlist and then get out so I can be a patient at the VA! Ha! It was a nice little note he put in and goes to show he's a great doct. or. So now I have to pick a new doctor. - so it's like I am starting all over again. Fun times.
Tomorrow I have some pre-op tests and I have my pre-op appointment with Dr. Thaker, the reconstructive surgeon. I can't believe in less that two weeks I'll have my surgery and then I'll be rid of this ridiculous cancer. Well, I hope so... meaning that the chemo-sucky got all the other "floating" matter circulating in my body. It's surgery time... then recovery time and then radiation time.
While I am not looking forward to the surgery, I am looking forward to it. I want to be healthy again... but I wish it didn't have to come to a surgery taking away my breasts. I'm not upset or anything... but it just sucks. But in the end I will be cancer-free and I will have bigger boobs. I was trying on some bras this morning and thinking... I won't need these anymore in less than 14 days! Ha!
Sunday, May 20, 2012
Day 127 - Oophorectomy Surgery, Breast Surgery & Breast Reconstruction Surgery
Sorry that I haven't been posting as frequently. I have been busy at work, getting over a cold and just busy when I get home to get to the computer to really post. Most of you may be wondering what happened at my three appointments on Thursday. Well, two out of three of them went well...
First appointment was with the Gynecologist Oncologist or gynoc. The appointment started off well enough. I went in and we started discussing the oophorectomy. Somewhere during our discussion the appointment went from a consultation to a pre-op appointment. The doctor left and told me she wanted to examine me and to get undressed. Then she came back in and looked at me and did a pap test and more. Then she left and said we'll discuss more of the surgery when she returned. But before she returned, her nurse came in with a tray full of blood. I said what are those tests for? She said she didn't know and said she could go and ask. I said yes because I didn't want to give blood without knowing. She left and then came back in. Turns out she was getting blood for pre-op stuff. I said, no. I didn't want to give any blood through my port because I was going to be talking to my other surgeons and they might want some other tests done and I didn't want my port accessed twice in one day. Hell no. Then I just broke down in tears because it was happening all so fast and the doctor didn't even tell me what the hell was going on. She had disappeared and said she'd be back to talk about the surgery. I figured we'd talk more about what went on and ask more questions. At that time the doctor came back in and I asked her what was going on. I said I came in for a consultation and where did this turn into something else? She replied that "You seemed certain that you wanted the surgery so I went ahead and made this into a pre-op appointment." I said, "Where did that change?" I told her I was a planner and I don't like surprises and I feel like I am being surprised right now and it doesn't feel good. It was at that time that she actually took time to discuss with me the procedure and what sort of other tests are she's going to need... blood, ultrasound and something else. I refused to give blood, so they set it up that after I meet with the other surgeons, I can get my blood drawn. We also talked about if I should get my mastectomy with immediate reconstruction and the oophorectomy done at the same time. I hadn't decided because I hadn't talked to the other surgeons yet. So after that discussion, we went through the pre-op stuff, like the risks and what not. She does laproscopic surgery. She'll make up to 6 incisions in my abdomen to snip and drag out the fallopian tubes and the ovaries. Once they are taken out, they are sent to the lab to be "staged" - to see if there were any microscopic cancer cells/tumors. In about two weeks the results come back. Now normally if I wasn't BRCA positive, they would stage in the operating room. But they want to be certain that everything is okay. The surgery takes about 2 hours and if I was doing this as a stand alone surgery, I would go home the same day. I asked Brad if I was overreacting about the whole appointment. He said no, because he thought that this was going to be a consulation appointment and not a preoperative appointment. He noticed that it changed its course with no warning. I am not sure if I want to go with her. I may talk with Brooke or Christine about her because I am not sure if I want to go with her because of her bedside manner.
Following that disasterous appointment, Brad and I walked to the Old Spaghetti Factory for lunch. That was a nice walk... it's about a mile away if that. We had a nice lunch and then walked back to OHSU's Center for Health and Healing for our next two appointments. We meandered our way back because we had about an hour to kill.
We got to our appointment about 20 minutes early and then were led back into a room about 2.30p. On our way there, I saw Maureen one of the CNA who works with Dr. Luoh. Then I passed the nurses station with the schedulers and Brooke was there. She ran out to give me a big hug. We talked for just a moment before we went to the our room. To make a really long wait short... I wandered out of the room and up to the nurse's desk to talk to Brooke. I told her about the disasterous Gynoc appointment. She and the scheduler, Sierra, were happy that I stood up for myself and said No and stopped all procedures from happening. They said that many patients don't advocate for themselves and just go with it. I always try to be in the know and so that way I am prepared. In any case, I saw Dr. Pommier, the surgeon who put in my port while I was chatting with the ladies. He called me out and asked, "How's it going Mrs. Rake?" I laughed. Finally after 3p, I finally got in to see Dr. Naik. She was finishing up with a patient. She looked at my boobs and was impressed that I responded so well to treatment. We talked about surgery and the whole appointment was driven by me and Brad asking questions. My first question after she examined me was "Would you suggest that I be a candidate for a lumpectomy now - IF I wasn't BRCA positive?" She said yes. That's all I wanted to know. I don't want a lumpectomy, I just wanted to know if I responded well enough to the treatment where a lumpectomy was a possibility. I'm still getting a double mastectomy. I asked how long the surgery takes... normally 4-5 hours. We discussed whether we should do an oophorectomy at the same time. She said that some patients do, but recovery time is longer. She suggested that I not do it at the same time. The oophorectomy will have to be done after her surgery, so that would mean I would be under anesthesia for 6 hours at the minimum and that's too long. Good to know. We talked about drains (a question she deferred to Dr. Thaker), good clothes to wear afterwards, pain protocol (narcotics, she uses IV pain, then changes to pill form as soon as the patient can handle pills), port removal (she's going to take out the port during the surgery - hooray!), is surgery scheduled for morning or afternoon (morning). I also asked what kind of lymph node dissection she will do. She said she would do an axillary dissection. She will take out 10-20 nodes depending on how many are there. Each person has different amounts of nodes in their body. She said that she will take out the cluster that was affected under my arm... and that may be anywhere between 10-20. I asked about the different levels of node dissection. She said that they normally do Level 1 and 2. Level 3 is where it's deep in the body and she normally doesn't do those unless she has to. Brad asked if the incision would be bigger or smaller now that the tumor has shrunk. She said that it would be a bit smaller. I asked how many nights I can expect to be in the hospital. Dr. Naik said anywhere from 1-2. I will have the drains in my body 10-14 days. I will be sore for a couple of weeks. My next course is another pre-op meeting where we go over the nitty gritty information and get waivers of consent. I will need an EKG and blood work. We asked her about blood work... which she wants about a week before the surgery. She said that since my last treatment was a week ago, my blood counts will be out of whack. It won't be a true representation. (Um, then why did the gynoc want my blood today? She should know that right after chemo, my blood counts won't be a true representaton) We said cool. I can't wait for the next step. Dr. Naik said that I look good and she can't believe that time has passed so quickly. I so believe it!
Next we waited for the last surgeon... Dr. Thaker. She came in and was so upbeat, energetic and I really like her. She said that I look great! She remembered the first meeting and she said that I look so much better than that meeting. Um, yea. :) Her first question was if I wanted to stay the same size or if I wanted to go bigger. I said, after all this, I want to be bigger. She laughed. She said that we will go with our original plan to do the tissue expanders and then after radiation, we'll switch out the expanders with the implants. Hooray! This appointmet was again driven by Brad and I. We had questions... the surgery will last about 1-3 hours. If all goes according to plan, as soon as Dr. Naik is done with the first breast, she will be called in and she will place the tissue expander under the pectoral muscle. She says usually when she's done with that, Dr. Naik is done with the second breast... so it's sort of a tag team. Wonderful. Less time under. She also uses a product called AlloDerm. AlloDerm is used because the pectoral muscle will not cover the whole expander and it creates sort of a sling. It's made of collogen, so blood flow and cells will begin to take over it. She calls AlloDerm as an empty apartment, and my body just needs to move in! I like her - did I mention that? After the expanders are in place, she will put in some saline so at least I will have little boobs after surgery. She doesn't want to fill them too big because she doesn't want to stretch out the skin and cause bad healing. Apparently when Dr. Naik goes in to do the mastectomy, she takes away a lot of the blood flow, so my skin needs to find new ways to deliver blood to other areas of the skin. I didn't know that. That's interesting. After about two weeks, I will see Dr. Thaker and the injecting the saline in the expanders. She'll start off small and then increase (100mL max). She said that it usually takes about 3 appointments until the desired size or about 4 weeks. Hooray! It's going to be cool because she said that I will be taking my new boobs out for a test drive. I don't have to guess. All I have to do is say "stop" and that will be it! So when I reach my desired size she'll put a little more in to for some "padding" and that will be it. Then I go to radiation and do that. Following that, she waits 3 months to make sure the skin has healed. If my skin does well, then it's on to the implant switch. That surgery will take about 2-3 hours. It is at that time that I think I will do the oophorectomy. Dr. Thaker said that would be fine. I asked about nipple reconstruction. That can be an office procedure at a later date... and tattooing would be done in office as well. I told her that I will be flying in September and since the expanders have metal in them, what happens. She said that she can write a letter stating I have expanders. She said that if I go to some remote area, then they may not take the letter... but she does write letters and says that normally security doesn't ask, nor does it cause problems. She said that when she was going through security at LAX, the security person asked if she had implants. She said, "No, but I have a lot of patients who do. Thanks for asking." I laughed. She said that I will have several drains... the breast and I may have one in the lymph nodes. They will be taken out in the office and held in by a stitch. As for pain management she puts in a pain pump which is a tube that that goes into the breast and numbs it, similar to novicain at the dentists office. It usually lasts about 3-5 days depending on how much I use it. When it's done, I can pull it out at home! Oh yes, she said that Brad can administer the saline into the tissue expander... um, no. She also said that when I am expanding, she will give me some pain medication to take before going to bed. She said that it's more uncomfortable and most people have the pain when they're going to bed and trying to relax. Our next appointment will be a week or so before surgery for the consent form and to go over the actual surgery. Fantastic. She'll also show me what the expanders look like. Oh yes, at a later date, she may take some fat from another part of my body and insert it onto my chest to make the breast look more natural - rather than two cantalopes. Ha. She then showed me pictures of breasts before, tissue expanders and then implants. Looks good! I can't wait.
First appointment was with the Gynecologist Oncologist or gynoc. The appointment started off well enough. I went in and we started discussing the oophorectomy. Somewhere during our discussion the appointment went from a consultation to a pre-op appointment. The doctor left and told me she wanted to examine me and to get undressed. Then she came back in and looked at me and did a pap test and more. Then she left and said we'll discuss more of the surgery when she returned. But before she returned, her nurse came in with a tray full of blood. I said what are those tests for? She said she didn't know and said she could go and ask. I said yes because I didn't want to give blood without knowing. She left and then came back in. Turns out she was getting blood for pre-op stuff. I said, no. I didn't want to give any blood through my port because I was going to be talking to my other surgeons and they might want some other tests done and I didn't want my port accessed twice in one day. Hell no. Then I just broke down in tears because it was happening all so fast and the doctor didn't even tell me what the hell was going on. She had disappeared and said she'd be back to talk about the surgery. I figured we'd talk more about what went on and ask more questions. At that time the doctor came back in and I asked her what was going on. I said I came in for a consultation and where did this turn into something else? She replied that "You seemed certain that you wanted the surgery so I went ahead and made this into a pre-op appointment." I said, "Where did that change?" I told her I was a planner and I don't like surprises and I feel like I am being surprised right now and it doesn't feel good. It was at that time that she actually took time to discuss with me the procedure and what sort of other tests are she's going to need... blood, ultrasound and something else. I refused to give blood, so they set it up that after I meet with the other surgeons, I can get my blood drawn. We also talked about if I should get my mastectomy with immediate reconstruction and the oophorectomy done at the same time. I hadn't decided because I hadn't talked to the other surgeons yet. So after that discussion, we went through the pre-op stuff, like the risks and what not. She does laproscopic surgery. She'll make up to 6 incisions in my abdomen to snip and drag out the fallopian tubes and the ovaries. Once they are taken out, they are sent to the lab to be "staged" - to see if there were any microscopic cancer cells/tumors. In about two weeks the results come back. Now normally if I wasn't BRCA positive, they would stage in the operating room. But they want to be certain that everything is okay. The surgery takes about 2 hours and if I was doing this as a stand alone surgery, I would go home the same day. I asked Brad if I was overreacting about the whole appointment. He said no, because he thought that this was going to be a consulation appointment and not a preoperative appointment. He noticed that it changed its course with no warning. I am not sure if I want to go with her. I may talk with Brooke or Christine about her because I am not sure if I want to go with her because of her bedside manner.
Following that disasterous appointment, Brad and I walked to the Old Spaghetti Factory for lunch. That was a nice walk... it's about a mile away if that. We had a nice lunch and then walked back to OHSU's Center for Health and Healing for our next two appointments. We meandered our way back because we had about an hour to kill.
We got to our appointment about 20 minutes early and then were led back into a room about 2.30p. On our way there, I saw Maureen one of the CNA who works with Dr. Luoh. Then I passed the nurses station with the schedulers and Brooke was there. She ran out to give me a big hug. We talked for just a moment before we went to the our room. To make a really long wait short... I wandered out of the room and up to the nurse's desk to talk to Brooke. I told her about the disasterous Gynoc appointment. She and the scheduler, Sierra, were happy that I stood up for myself and said No and stopped all procedures from happening. They said that many patients don't advocate for themselves and just go with it. I always try to be in the know and so that way I am prepared. In any case, I saw Dr. Pommier, the surgeon who put in my port while I was chatting with the ladies. He called me out and asked, "How's it going Mrs. Rake?" I laughed. Finally after 3p, I finally got in to see Dr. Naik. She was finishing up with a patient. She looked at my boobs and was impressed that I responded so well to treatment. We talked about surgery and the whole appointment was driven by me and Brad asking questions. My first question after she examined me was "Would you suggest that I be a candidate for a lumpectomy now - IF I wasn't BRCA positive?" She said yes. That's all I wanted to know. I don't want a lumpectomy, I just wanted to know if I responded well enough to the treatment where a lumpectomy was a possibility. I'm still getting a double mastectomy. I asked how long the surgery takes... normally 4-5 hours. We discussed whether we should do an oophorectomy at the same time. She said that some patients do, but recovery time is longer. She suggested that I not do it at the same time. The oophorectomy will have to be done after her surgery, so that would mean I would be under anesthesia for 6 hours at the minimum and that's too long. Good to know. We talked about drains (a question she deferred to Dr. Thaker), good clothes to wear afterwards, pain protocol (narcotics, she uses IV pain, then changes to pill form as soon as the patient can handle pills), port removal (she's going to take out the port during the surgery - hooray!), is surgery scheduled for morning or afternoon (morning). I also asked what kind of lymph node dissection she will do. She said she would do an axillary dissection. She will take out 10-20 nodes depending on how many are there. Each person has different amounts of nodes in their body. She said that she will take out the cluster that was affected under my arm... and that may be anywhere between 10-20. I asked about the different levels of node dissection. She said that they normally do Level 1 and 2. Level 3 is where it's deep in the body and she normally doesn't do those unless she has to. Brad asked if the incision would be bigger or smaller now that the tumor has shrunk. She said that it would be a bit smaller. I asked how many nights I can expect to be in the hospital. Dr. Naik said anywhere from 1-2. I will have the drains in my body 10-14 days. I will be sore for a couple of weeks. My next course is another pre-op meeting where we go over the nitty gritty information and get waivers of consent. I will need an EKG and blood work. We asked her about blood work... which she wants about a week before the surgery. She said that since my last treatment was a week ago, my blood counts will be out of whack. It won't be a true representation. (Um, then why did the gynoc want my blood today? She should know that right after chemo, my blood counts won't be a true representaton) We said cool. I can't wait for the next step. Dr. Naik said that I look good and she can't believe that time has passed so quickly. I so believe it!
Next we waited for the last surgeon... Dr. Thaker. She came in and was so upbeat, energetic and I really like her. She said that I look great! She remembered the first meeting and she said that I look so much better than that meeting. Um, yea. :) Her first question was if I wanted to stay the same size or if I wanted to go bigger. I said, after all this, I want to be bigger. She laughed. She said that we will go with our original plan to do the tissue expanders and then after radiation, we'll switch out the expanders with the implants. Hooray! This appointmet was again driven by Brad and I. We had questions... the surgery will last about 1-3 hours. If all goes according to plan, as soon as Dr. Naik is done with the first breast, she will be called in and she will place the tissue expander under the pectoral muscle. She says usually when she's done with that, Dr. Naik is done with the second breast... so it's sort of a tag team. Wonderful. Less time under. She also uses a product called AlloDerm. AlloDerm is used because the pectoral muscle will not cover the whole expander and it creates sort of a sling. It's made of collogen, so blood flow and cells will begin to take over it. She calls AlloDerm as an empty apartment, and my body just needs to move in! I like her - did I mention that? After the expanders are in place, she will put in some saline so at least I will have little boobs after surgery. She doesn't want to fill them too big because she doesn't want to stretch out the skin and cause bad healing. Apparently when Dr. Naik goes in to do the mastectomy, she takes away a lot of the blood flow, so my skin needs to find new ways to deliver blood to other areas of the skin. I didn't know that. That's interesting. After about two weeks, I will see Dr. Thaker and the injecting the saline in the expanders. She'll start off small and then increase (100mL max). She said that it usually takes about 3 appointments until the desired size or about 4 weeks. Hooray! It's going to be cool because she said that I will be taking my new boobs out for a test drive. I don't have to guess. All I have to do is say "stop" and that will be it! So when I reach my desired size she'll put a little more in to for some "padding" and that will be it. Then I go to radiation and do that. Following that, she waits 3 months to make sure the skin has healed. If my skin does well, then it's on to the implant switch. That surgery will take about 2-3 hours. It is at that time that I think I will do the oophorectomy. Dr. Thaker said that would be fine. I asked about nipple reconstruction. That can be an office procedure at a later date... and tattooing would be done in office as well. I told her that I will be flying in September and since the expanders have metal in them, what happens. She said that she can write a letter stating I have expanders. She said that if I go to some remote area, then they may not take the letter... but she does write letters and says that normally security doesn't ask, nor does it cause problems. She said that when she was going through security at LAX, the security person asked if she had implants. She said, "No, but I have a lot of patients who do. Thanks for asking." I laughed. She said that I will have several drains... the breast and I may have one in the lymph nodes. They will be taken out in the office and held in by a stitch. As for pain management she puts in a pain pump which is a tube that that goes into the breast and numbs it, similar to novicain at the dentists office. It usually lasts about 3-5 days depending on how much I use it. When it's done, I can pull it out at home! Oh yes, she said that Brad can administer the saline into the tissue expander... um, no. She also said that when I am expanding, she will give me some pain medication to take before going to bed. She said that it's more uncomfortable and most people have the pain when they're going to bed and trying to relax. Our next appointment will be a week or so before surgery for the consent form and to go over the actual surgery. Fantastic. She'll also show me what the expanders look like. Oh yes, at a later date, she may take some fat from another part of my body and insert it onto my chest to make the breast look more natural - rather than two cantalopes. Ha. She then showed me pictures of breasts before, tissue expanders and then implants. Looks good! I can't wait.
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