All along the first part of our cancer journey, I have felt like we really didn't have to make any decisions. I mean, decisions in my treatment were definitely being made. But, I felt like the direction we should take was made so clear that we didn't really even need to think about it. But, my upcoming surgery has offered some new options and potential directions and we are actively seeking God's direction for these next steps in my journey.
Our previous appointment on 1/8/13 with my breast surgeon (Dr. M.) didn't go too well. I mentioned in a previous post that we left there with many questions and felt like when we did ask a question, she seemed inconvenienced by having to answer it. We left the appointment not even knowing what to expect with surgery or what exactly she would be doing in the operating room, besides the fact that it would be some sort of left breast mastectomy. We also felt she didn't seem as excited at the results of the ultrasound she performed, which showed significant improvement, as we did. We had heard her bedside manner wasn't the greatest, but we had never experienced that prior to that appointment. We thought perhaps it was because we had to bring Abbey to the appointment and she was distracted by her, 0r perhaps she was just having a bad day. So, we decided we would definitely be prepared at the next appointment (pre-op appointment) with a list of questions to ask her so that we felt comfortable with the upcoming surgery and give the doctor another chance. I was told the scheduler would be contacting me to schedule the upcoming surgery.
Between now and then, my surgery has been scheduled for four different dates and times. Originally, it was for the early morning of 2/11/13 (today). Then, the scheduler called to let me know she needed to move the appointment to later that day. That didn't bother me and I told her that wasn't a problem. My mom and dad, who own an embroidery business (and are the only employees there), made plans to come down for the first week of my surgery. They had planned to close their business for the weekdays they were planning on being away. However, my sister's sweet mother-in-law who lives in Iowa offered to take vacation from her job to travel to Oklahoma to watch my sister's girls during that week so my sister (Holly) could work at my parent's embroidery business. This is SUCH a huge blessing to all of us. My parents won't have a loss of income for a week and don't have to feel the burden of having a closed business for a week. This again is a picture of sacrificial love on the part of Holly's mother-in-law, Susan, Holly, and my parents. It was all set and I felt peace about everything. Then, about two weeks ago, the scheduler called me again and said, "I have some bad news." She told me she had to move the surgery again. But this time she had to change the date--to 2/13. Apparently, the original surgical facility she scheduled me at is out of network for our insurance, so it needed to be scheduled at a different facility. That was sort of a pain, because I will have less time with my parents' help, but at least it was still that same week. Then, last week, the same scheduler called once again and said she had to move my surgery date again. Upset by this news, I explained to her how everyone had to arrange their schedules around this date, which had already been changed three times. She explained that Dr. M. is going out of town the following day and needs to be available in case of complications from my surgery--definitely understandable. The next closest date that was available was 2/27. This is nearly four weeks from my last chemo. Also, it is only 5 days from my follow-up MD Anderson appointment, which was scheduled 3 months ago. I'm not sure I will feel like traveling for several hours in a vehicle just 5 days post surgery. I had no choice but to book the surgery so that it didn't go to another patient.
In the meantime, I searched the web for other breast surgeons in town. I read reviews and found one with some excellent reviews and recommendations (Dr. Nelson). I contacted her office and was delighted by how friendly everyone was. I explained my situation and they immediately booked me for an appointment (scheduled for this Wednesday, 2/13) and even blocked off a couple of surgery dates and times for the following week. This was service! My current surgeon's office is not this service-oriented and even acts like it is such a chore to answer my questions or accept my phone call. This surgery is a big deal, and something about which I know nothing. So, I feel like my surgeon's office should be more kind and accommodating. When I met with my oncologist, Dr. H., on this past Friday morning (2/8), I explained everything to her. I asked her opinion on the two different surgeons and the surgery date of 2/27 with Dr. M. She wasn't concerned with the surgery date of 2/27 and thought it would be fine. Also, she thought both surgeons are terrific from a technical standpoint. However, she was most comfortable with me staying with my current surgeon, Dr. M., because she knows my history, my complications, my journey through chemo, etc. This made sense to us. So, we thought we would keep this in mind as we attended my pre-operative appointment with Dr. M. that afternoon.
On Friday afternoon, we attended my pre-operative appointment with Dr. M. We began the appointment with some pre-appointment stuff with the nurse (the same one who has contacted me numerous times to change the surgery date). She again seemed agitated anytime I asked a question or tried to talk about the scheduling nightmare. She even said, "well, most of our non-cancer patients don't really care as much about their surgery dates/times whereas the cancer patients all seem to want to just get it over with." I explained it was important that we know the definite date/time because we have several schedules to coordinate since we have folks coming from out of town and vacation time to be planned, etc. Then, we met with Dr. M. We had our list of questions, and it seemed to be going much better than the last time--at least initially. However, she then asked what type of surgery I would be having--unilateral, or bilateral mastectomy. We had already discussed this before--I would be having a unilateral mastectomy. She even asked if I had already had a lymph node biopsy to confirm cancer there. It seemed as if she knew nothing about me. Now I was feeling like Dr. H.'s biggest reason for me to stick with Dr. M. had gone out the window. (Remember, Dr. H. liked that Dr. M. knew my history and everything about me and for that reason recommended I stay with her.) But, I felt I had to start completely over with Dr. M. at that appointment. I explained my history and then that I had originally thought we were going to be doing an expander during the mastectomy, but that my radiation oncologist said that she was told there would be no expander after discussing it with Dr. M. and my plastic surgeon. Dr. M. stated that they all discussed it and decided since I had trouble with chemo and my cancer was advanced, they were going to keep things as simple as possible for my surgery. This meant no expander and a unilateral, modified radical mastectomy. That made sense to me. Then, she asked what kind of reconstruction I planned on having. I let her know that I was told implants were not an option for me due to the radiation I would be having and that the DIEP Flap would be my best option. (DIEP flap is where they take your abdominal tissue and use it to construct breasts). She then asked me to pull up my shirt and showed Drew that there was no way to make two breasts out of my "extra" abdominal tissue. She said I was too thin for the flap surgery. This is what I thought as well based on what I was told previously by others. But, once you have radiation, it is difficult to reconstruct the breast with implants due to the changes it makes to the skin over that breast. She said that she had never seen post-radiation implant reconstruction be successful. I was so confused. So now she was recommending expanders during the mastectomy surgery and prior to radiation (to preserve some space, since radiation tightens and damages the skin) and implants (after radiation). She gave me the name of a different plastic surgeon in town who could perform the surgery for the expanders alongside her following the mastectomy. She said he would probably recommend a double mastectomy with expanders. She asked if I would be getting my port out during surgery. I explained that I may be getting more chemo--based on the pathology results of surgery. Based on that, I can only have a unilateral mastectomy, since the expander on the right side could interfere with the port. As you can see, things got very complicated. Now, I needed to try to see another plastic surgeon and possibly coordinate the surgery date so they can both be in the same room at the same time for my surgery. In the meantime, I am going to keep my appointment with the other breast surgeon, Dr. Nelson. Perhaps that is the reason all of this is happening--to show me that this other surgeon is the right one.
I found out that the new plastic surgeon does have some times available for the dates that both breast surgeons are available. So, that is a relief. I have an appointment with the new plastic surgeon on Monday (2/18). I am going to get his opinion on all of this. I have read contradictory articles about implants and radiation. Apparently, there can be quite a few complications with expanders and implants and radiation. I have also seen that MD Anderson recommends completely delayed reconstruction for patients with advanced cancers receiving radiation. So, I am a little leery of having an expander put in. I also know having the expander placed would delay my radiation treatment, as there will be several procedures between the surgery and radiation to "expand" the implant (expander) to create some space for the implants following radiation. I would have to wait until this is complete and I am completely healed before radiation can take place. So, the simplest route to take would just be a left modified mastectomy with completely delayed reconstruction. But, if I do want reconstruction in the future with that breast, I could have some issues.
Now you can understand why I haven't updated this blog with surgery dates/times or other news. There has been so much up in the air. But, because I have received many questions about my surgery date, etc. lately, I thought it was important to document this part of my journey here. There is a reason for all of this. I know I will read this post later and it will be so clear what God was doing. I will continue to pray about the decisions we have to make about reconstruction, which surgeon we will use, and ask for God's direction. Would you pray along with us that God makes the direction so clear, as he continues to do with this journey? We have felt at such peace with everything and are expecting the same as we go through this next week of appointments.