Surgery Complete!

Here I am sitting at home in bed. My final surgery to this long ordeal is finally complete. Yesterday I underwent a tissue expander to implant exchange and also an oophorectomy. Today I have managed to get around. This surgery recovery is by far much easier than the double mastectomy. I can't say that I am pleased with the results yet, as there is still lots of swelling in the chest area. But the boobs are much softer and I am thankful for that.

Surgery check in time yesterday was at 10. I got into pre-op around 10.35. I had to scrub down and take off all of my clothes and don a lovely hospital gown. Then it was a waiting game. My surgery was scheduled to begin at 12.15. Um... they were more than hour behind schedule. I got a scopolamine patch to put behind my ear to help with nausea. They tried to get a line in my. They poked once. Then I told them to get an ultrasound. The anesthesia doctor put a line in my arm using the u/s. However, just before they were going to take me into that room, the vein collapsed or something. All of a sudden my arm started to hurt, and hurt bad. The tried to get some blood return but didn't. They stopped the IV. Then the nurse anesthesia started one in my hand. That felt so much better. Then she gave me sleepy medicine. I said goodbye to Brad and I was off. I made it to the OR feeling good. I even moved from the gurney to the table. I was talking with the people in the room, making friends. The last thing I remember is having an oxygen mask placed over my nose and mouth. I was gone.

Dr. Munro was the first to do the surgery. Hers was the faster one. Dr. Thaker wanted to go last because she wanted to take her time with my boobies and make sure they looked okay. So apparently the surgery took longer than expected. Dr. Munro got my ovaries and fallopian tubes out okay. She didn't find any abnormalities in that area, so she didn't touch my lymph nodes. Then there was a period of time that no one was doing surgery on me. They had to redress me with the curtains and drapes. I'm led to believe the second surgery took about 3 hours. I woke up in recovery around 710p. I was in and out during that time. I finally came out of it around 730. At around 8, my recovery nurse, Linda, called Brad and he came down to see me. We hung out for about 2 hours in recovery. I had apple juice to drink as well as saltines. After successfully going pee, I was discharged. I wanted to come home to rest.

I have JP drains, which means I got the highly cohesive silicone implants. I am happy that I got these. Today I am sore in my chest (down my cleavage) and in my abdomen. But I have pain pills and I am taking it easy. I wish I could do more, but I want to heal. Well, I am a bit tired, so I am going to go.

Day 366 - ONE YEAR!

One year today I was at the Oregon Zoo with my family enjoying the day. In just a few short hours, my life would forever change with one phone call.

Today marks one year since my breast cancer diagnosis. One of my friends sent me a shirt during treatment that read "I will fight and I will win." Well, at this pivotal mark in my life, I can say that I have won. I have won my short term goal of getting all the cancer out of my body. I have won the right to see and enjoy another day. I continue to fight cancer every day by taking my tamoxifen. Each day, though, I am coming out victorious and I plan to continue on this streak. I am going to be undefeated.

Reflecting over the past year... I've had lots of ups, downs and in betweens. I can't stress enough - if I didn't have the love and support from my friends and family - this victory would not have been easy. The first few days were filled with uncertainty, followed by anger and then with the will to survive. I have learned a lot about myself - my limitations over the year. I have also learned a lot about breast cancer and the treatment itself. All this I believe I have shared with you over the course of the journey.

Following my last radiation treatment - almost four months ago - you may have noticed that my blogging has been sporadic. I have rejoined gotten back in the fast lane of life. I never exited life's freeway, just merely merged over to the slow lane during treatment... only to merge in and out of the slow lane and center lane. But I can now say that I am back in the fast lane moving with time and enjoying life. And that is why I am not blogging as much. I'm enjoying life. Spending time with my family and friends and trying to leave as much of cancer behind me as possible.

Cancer survivors often say that there will be a time when you don't think about cancer. I admit that I do have my days where I don't remember the past year and then there are days where I remember. I stretch a certain way or the kids push on my chest - they are all reminders. I get out of the shower and look at my chest and I don't cringe (never did). I just look and think what beautiful skin I have and that I've finally got the big boobs I always wanted. I look ahead at what is to come instead of dwelling in the past.

Cancer will always be a part of my life. I accept that. But I will not let it rule my life.

And with that... I've got 62 more days until I go on my celebratory cruise. When I return, I'll have my tissue expander and oophorectomy surgery and I will be done.

If you don't mind, will you please respond to my poll to the right of the blog. Some of you have told me I should publish my blog. I want to know if you think I should.

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.

Day 103 - Round 7!

I know I am late posting this... but I've been busy. :)

Round 7... means I only have one more treatment to go! I'm almost there!

On Thursday we met with Dr. Luoh and went over the test results of the ultrasound. He's very happy that everything is going down and that I am still responding to treatments. We are going to keep on the same regimine. He was also pleased that I didn't get as sick as I had been getting. So he ordered another hydration of a liter of saline for Friday and then 4mg of Neulasta to follow. I do think that is making a difference. We also discussed my BRCA2 positive result. He said that will most likely change some of the post treatment. I was going to go on tamoxifen for five years, but since I tested positive, he says that I will most likely get an oophorectomy and then be on tamoxifen for about 1-2 years and then I will be put on a different hormone suppressor. We want to get rid of the estrogen in my body. He said if I don't want to do the oophorectomy, they have drugs to put my ovaries to sleep. In any case, either way, estrogen will drop about 92% in my body. There are other organs that would provide the other 8% of estrogen, so I would never quite be free of estrogen. But a 92% decrease is good. I like Dr. Luoh. He is so thorough. I also asked him after my chemo-sucky treatments will there be more cancer in my body. He said yes, and that's what the hormone therapy and stuff is for. We are going to starve the cancer by getting rid of the estrogen receptors. Makes sense. He said that there may still be some "floating" around in my body... most likely from where my tumor is. But he's confident I will be fine. I trust him. Oh yes, and then he told me that he wanted me to have an ultrasound done on my left leg. He was worried about me having deep vein thrombosis (DVT)... or  blood clot in my leg after last week and my spleen issue. So after my chemo-sucky treatment, I was to go downstairs to the third floor to get an u/s. Fun times.

Next on the list of things to do was to talk to the genetic counselors. That was fast and easy. I had many of my questions answered when Kelly called me to give me the results. So there was nothing new there. They just suggest that I get out the parts before I am 40. Most likely I will get them out sometime this year, either during the double mastectomy or reconstruction. Everything seems to be going as scheduled.

Following my chemo-sucky, I went downstairs for my ultrasound. They found nothing. But it was cool looking at my veins and arteries in my leg. I am learning so much stuff about my anatomy.

Day 101 - I'm shrinking! I'm shrinking!

I went in today for my ultrasound. I had a different sonographer who took the pictures and measurements. When she was done she said she was going to talk to the doctor. I asked her if Dr. Chan was in. She said yes. I said good because he is the one who has been following me. So Dr. Chan came in a few minutes later with a Dr. Yow (I think??) who was an OB/GYN resident. I told him that I was BRCA2+. He said that's the reason why I got breast cancer so early. Yup. Then I said that I will most likely now have to get an oopherectomy. The other doctor nodded yes. Anyway, Dr. Chan wanted to look at my breast again. I like him. He said that the tumor was shrinking. It measured 2.2 x 1.8 x 1.6 cm compared with a previous measurement of 3.6 x 3.3 x 2.0 cm. Then he moved to the axillary nodes (under my arm). He found two nodes and said that they are kidney shaped and they don't appear as thick. The largest measured 1.0 x 0.9 x 0.3 cm compared with a previous measurement of 1.4 x 1.0 x 0.7 cm. Then he measured the node in my neck. It measured 1.2 x 1.1 x 0.5 cm compared with 1.5 x 1.4 x 0.6 cm prior. So he was happy with everything and said the treatment is doing what it's supposed to do. The last time I had any measurements was just before my third AC treatment. So I've gone through 4 more treatments. I wish it had gone down even more... but we are moving in the right direction. You'll have to remember that the axillary nodes when I first got to OHSU were "clumpy" and they could find no clear node. So now that they can find the nodes again is awesome. In fact, he was having trouble finding one of the lymph nodes under my arm. So this is good.

Now I get to look forward to two more treatments. And I seriously mean that I get to look forward to two - not 8 a few months back. Let's hope that I don't get sick again. I want to feel good this weekend. That will mean that maybe I will feel good on Mother's Day!

Oh, when I was doing some research online about BRCA, I read that being BRCA1 positive (I'm BRCA2) can actually hinder the chances of conceiving. Interesting. Something about the gene and how it affects the eggs. Just in an interesting thing I found. I wonder if that will be part of a test for those undergoing fertility issues...

Day 100 - I know what caused the cancer!

Honestly... give a girl a break.

Got the genetic testing back. Instead of testing negative for BRCA 1 or 2, I tested postive for BRCA 2. That's the genetic mutation in the 13th chromosome. So for me they suggest a double mastectomy (was going to do that) and an oopherectomy or the removal of the ovaries and fallopian tubes. Doing a double mastectomy reduces the chances of me have a new breast cancer by 95%, so there's a 5% chance I may get another cancer in my breast (not caused by the initial cancer that I have now). I will have an breast exam twice a year for the rest of my life. That may be just a physical exam, or it could entail a mammogram. They suggest a surgeon who specializes in the breast because I will be getting reconstruction. If I don't get a double mastectomy, I increase the chances of me getting a new cancer in my breasts. In addition, I would have to get a twice yearly exam where I would get a mammogram done one month, then six months later a breast MRI (uh, no!). So for the ovarian cancer, I have a 27% chance of getting ovarian cancer. If I get an oopherectomy, I reduce my chances of getting an abdomen cancer (same cells found in the ovaries/fallopian tubes) to 2-5%. Taking tamoxifen (which is an estrogen blocker) for five years reduces the chance of me getting breast cancer again by 50%.

I will meet with the genetic counselor on Thursday. But I told the lady that I had to ask these questions now otherwise I will not be able to sleep. She understood and said she'd do the same. I asked her which is more common... BRCA 1 OR 2. She says the more common genetic default is those with BRCA1. However, they are more commonly known to be triple negative where they test negative for estrogen, progesterone and HER2 neu receptors and is a little more difficult to treat. They are also at a 45% risk of getting ovarian cancer. So I guess being BRCA2 is better? But I don't come without risks. I have a a 7% chance of getting pancreatic cancer. And I am at a higher risk for melanoma (thank goodness I am not a sun worshipper). The melanoma is screened by skin exams. As for the pancreatic cancer... I will have to find out about that. I do know that a surgeon will screen for that... however, I don't know if there is a blood cancer marker that they test for.

If I don't do an oopherectomy, I can keep screening for a cancer marker via a blood test. However, ovarian cancer is very hard to detect until it is farther along in its cancer making ways. Honestly, I was thinking about doing an oopherectomy anyway. Figuring that the ovaries are the providers of the hormone estrogen. It just sucks that I have to make the choice. I'll let you know what I decide.

So I am here thinking about my news. It's not a death sentence. It's just not what I really want to hear. I'd rather have heard... good news... you test negative. But now I do know why I got breast cancer at such an early age. It just sucks to have to do all these things so early in life. I feel deflated. I love my life and I will do anything to extend it... but to lose my boobs, then to think that I am going to lose my ovaries and fallopian tubes. I might as well do a hysterectomy because then I won't have periods anymore! Oooh there's an idea. I guess what's most troubling for me is that Amelia and Elaina have a 50/50 chance of being positive for the genetic mutation. I feel a bit guilty to burden them with the idea that some day they may get breast cancer. They may choose to get tested, or they may not choose. We shall see. Maybe by the time they turn 18 (when they can make that decision themselves) we will have found a positive cure for breast cancer. But I guess I am feeling most blue because of what their lives will entail, their uncertainty, or their decision they will have to make... to know if they are a carrier. It just sucks. And I am bummed.

By the way... I had nothing to write on... so I wrote all the information down about the test results on the back of our voter pamphlet guide! hahaha!

Tomorrow I have an appointment to see if my mass shrunk. It's another ultrasound. Will let you know!