OK, so my last surgery was a plane crash. A fiery inferno that landed on my chest with extra scars and a flat chest, but I still walked out of the wreckage. Let's just say, I decided not to fly that airline anymore. After December's surgery I decided to put on my medical student hat again and learn everything there is to know about breast reconstruction after mastectomy. I did this kind of research with my oncology, chemo, choice of surgery, and I did not do this for my plastic surgery and reconstruction. I really have no regrets about this though. I know if the same situation presented itself again, but I have the knowledge I do now, I might not have made any different choices. At the time I had to decide about my reconstruction, I just wanted the cancer out. So I focused on getting the cancer out with the right general surgeon and keeping it out with the right treatment and oncology plan, but I did not do my research on what I really wanted and more importantly, what I could get or was reasonable to expect from my reconstruction. I don't beat myself up about this, I just chalk it up as lesson learned and hope that by sharing what I have learned with other women (like the women on my favorite Breast cancer site, or my online support group) that I can help prevent them experiencing some of the same disappointment I had.
I could write a whole blog on what I learned not to do through the reconstruction process, and I will in the future, but for now I will share with you my personal process that I have arrived at in the last few months.
After December's surgery I decided to research the literature and cancer sites to find out who was the best of the best in terms of breast reconstruction. There are some who specialize in different types of reconstruction, so I was looking for the Dr. who was the best at breast reconstruction from implants. All of my research and looking at who authored some major studies on the subject, kept leading me back to one man, Dr. Scott Spear in Georgetown, DC at Georgetown Hospital. I called for an appointment and had one scheduled for the weekend I was going to be in town anyway for a breast cancer conference with Young Survival Coalition. Last weekend, we had this conference (an amazing weekend for me) -- more on that later. Monday morning Jeff and I braved the 6 inches of snow they got in the DC area the day before and met with Dr. Spear.
You can tell when you have entered the office of someone in high demand because we had to go through several "layers" of staff and interviews before he would see us. I was told to sit in a very specific chair (Jeff and I had to switch places) and they had very specific methods for doing things. I had been warned that Dr. Spear was all about business and not a small talk kind of guy. I was totally OK with this. He doesn't have to be my friend as long as he is great with a scalpel. I imagine if I was earlier in this process or had just been diagnosed, this might be more of an issue, but it wasn't for me.
My prayer for the last few weeks has been that I would walk in there and he would say, "We can absolutely get you the breasts you want" with no hesitation. Several people have asked me what exactly is wrong with my breasts now, is it just that they are too small? The answer to this question is No, its more than that. (Warning: Boobie details coming)....I was told I would never be able to have breasts as large as I had before cancer (a full C cup) because the implant was behind the muscle you could only go so large. I have since learned this in not the case, it just requires different techniques in getting the implant in there. So I would like to be as close (or maybe a little bigger, wink, wink) to that previous size I was before. Dr. Spear said, No problem. Second, my breasts are VERY far apart right now, at least 6 inches apart. The edge of my implant is actually under my armpit. I was told that I could not get them any closer without damaging the pectoral muscle or keeping them behind the muscle. I have also since learned that this is not the case. I want cleavage again. Dr. Spear said, No problem. Third, I have some "hills and valleys" on the overall breast shape (one huge valley on the left side) that need to be rounded out to look more breast shaped, Dr. Spear said No, problem. In fact, he said in the final surgery he sometimes uses body fat from other parts of the body to fill in any of these type of imperfections. (So you mean I might get a small liposuction out of the deal? SIGN ME UP!) Lastly, I had two more large scars on my chest from my second surgery. I had understood that I was going to have additional scars, but I I thought they would be small inch long incisions, instead they are 3 inch incisions and quite large. I have since learned that going through the original incision is the common practice for final implant placement and has been proven to have little or no affect on infection or incision healing. Unfortunately, there is nothing Dr. Spear can do to get rid of these additional scars, but he can do all my procedures from here forward through my original mastectomy scars and perhaps clean them up a little along the way. Three out of four requests is not bad. I realize there are some people reading this blog who may want to know what my breasts look like now for the sake of your own reconstruction journey or perhaps to share with someone you know going through this journey. If that is the case, you may email me and I will be happy to show you pictures of my current chest. I will admit it is something I am embarrassed by, but I think is important to share with others on this journey, because I wish I had seen the good with the bad when I started on my own journey.
How will he do this? I guess cancer is a lot of "one step forward, two steps back" at times. He gave me the option of having one more surgery where he puts in a larger implant, but admitted I would not likely have the cosmetic results I would desire. He is 5 hours away from me, so logistically this presents additional issues in terms of future surgeries and follow-up appointments, but I know now that it is worth taking some additional time to get things right. I have learned one thing very clearly through cancer. It is much easier to live a life of patient decisions then of distant regrets. With that being said, we decided to go back to tissue expanders. Goodbye, nice soft implants, here comes large rocks on my chest again. Then after several more large (and likely quite painful) expansions I will have enough stretch of my muscle and skin to get the best situation for Dr. Spear to work with.
So where does that leave me? I decided Dr. Spear was "Dr. Right" and his DETAILED measurements of my chest and outlining my plan from this point forward showed me that he really knows his stuff and was creating the best plan for me. He normally has a 2-3 month waiting list for non-emergency surgeries of this type, so I went out to meet with receptionist and get on "the list". THIS IS HOW I KNOW OUR GOD IS A PERSONAL GOD WHO CARES ABOUT THE LITTLE THINGS....His receptionist told me he had a cancellation for THIS Friday, March 9th, would I like the slot? I jumped at the opportunity, and signed up. So, this Friday, we will travel back up to NoVA and I will go under the knife for surgery number 5 in this cancer journey. He will remove my current implants, and replace them with wider, larger tissue expanders. He will also create a bigger cavity and bring the expanders closer together so I can have my cleavage again. Look out Pamela Anderson, I am going to give you a run for your money.
So how I am feeling about all this? Let's just say, I am cautiously optimistic. The thing about cancer is that it sucks the hope out of you every chance it gets. Cancer is not just a malformation of cells, it kind of malforms your hope and spirit sometimes too. I want to be excited, but I feel like I just can't let myself get my hopes up again at this stage of the game. It doesn't mean God is any less a God, or that he can't do this thing to make me feel whole again, but I often wonder if maybe he just doesn't want to. So for now I sort through what it means to be "in process" from a physical and spiritual stand point. I imagine this is what a lot of people must confront when facing down serious physical changes, and I must continue to glean from this process what the Lord wants me to write on my heart through all this.
I wonder if this is why he chose diseases like leprosy in the Bible to teach us so much about his healing power. It is such an outward disease that ravages the body, but once his healing comes down, we can see such power in the transformation.
As for my conference this past weekend. It was for Young Survival Coalition (YSC) it is a breast cancer organization dedicated to women with BC under 40. It has been my free therapy for the last 10 months (wow, has it been 10 months already?) and I have corresponded with a core group of women online that have going through this same journey at the same time I have. I got to meet about 25 of these women for the first time in person on this weekend and it was like a family reunion. One woman in particular, Teresa, has become like a sister to me as she was diagnosed at the same time I was, did a double mastectomy like me, went through chemo with me, and is going through the reconstruction process too. Our personalities have clicked on line and I had wondered if that would translate to real life. We met up at the conference and within minutes you would have thought we were long lost sisters reuniting. This time strengthened our friendship and cemented the fact that I will have a friend for life that has been through this journey alongside me. Also at this conference, were doctors and scientists sharing about where we are in the fight against BC, what is on the horizon, and what we still need to figure out. This was awesome to hear what they are learning, but disappointing to hear that very little of it applies to my type of cancer. Its just the nature of the beast that I developed. Being "triple negative" (hormone negative and HER2 protein negative) means that I cannot make use of future therapies that address hormone levels or HER2 levels, because it has nothing to do with my type of breast cancer.
For the record, some of you may have heard about a Norwalk virus outbreak at a Breast Cancer conference in DC last weekend, unfortunately, that was our conference. I was not personally affected at all but about 100 of my fellow conference attendees were. Since there were some women there still in treatment, this is a scary thought.
So that is the latest stop on the cancer train, I will update you all after my surgery this weekend. Please pray for this new surgery, my recovery, my doctor, and the balance of how often to go to NoVA, when to pull Bethany out of school for all this and the concept of getting back to normal again.
Kat
On a spiritual level it made me realize how much life there is in the midst of the chaos and danger of the world. Boy, I thought my life was stressful, no wonder why she is so upset everytime we drive in and out. I wonder how many of us have cars driving over the top of us when we are just trying to be quiet and raise our families.
