Ninth One’s a Doozy

A week from tomorrow, I will face my ninth surgery. You’d think I’d have this down by now, but this one is going to be a doozy. I’ve had almost two years to consider many options. I put a lot of thought into deciding which surgery would best repair the damage done by cancer, surgeries, infection, radiation, and lymphedema. I consulted three plastic surgeons (and Dr. Google). The main motivator in this decision has been the lymphedema. It has been increasingly difficult to control the swelling in my arm despite all my efforts. I have to try to slow the progression of this incurable condition in my dominant (read-Throttle) arm.

Because of the lymphedema, I have decided to work with Dr. Chang at the University of Chicago. He was an early pioneer of Lymph Node Transfer procedures in the US. I had a consultation with Dr Chang in May. At that time, he told me that my best chances for successfully controlling the lymphedema would be to undergo a DIEP Flap breast reconstruction with lymph node transfer. This option will also require a second surgery, which will fine-tune the reconstruction and possibly require a lymphaticovenular bypass surgery in my arm, which will re-route blocked lymph vessels into veins where the blood flow will carry trapped fluid out of my arm.

Here’s how Wikipedia defines it, “DIEP Flap surgery is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy.” In layman’s terms, they will cut me hip to hip along the “bikini” line (though my bikini days are best left in the 90s) and use that tissue to make a boob. The added bonus is that, while my abdomen is flayed open, Dr. Chang can harvest the underutilized lymph nodes that he locates in my abdomen and transfer them into my armpit where I lost lymph nodes to cancer, causing the lymphedema. The goal is that the transplanted nodes will start to function in their new location to help filter lymphatic fluid out of my arm. It’s pretty fascinating stuff. I am thrilled at the chance to repair the damage.

They say a picture’s worth a thousand words, but I thought I’d spare you the gore and let you get a visual from this lovely graphic. If you want to seek out the gore on your own, I encourage you to google “DIEP Flap.”

diep-flap

I am scheduled for surgery on January 6th. I had originally tried to get scheduled for November so I could be well on the way to recovery (and my new career-more on that later!) by the New Year. But, by the time I called to schedule in August, Dr. Chang was already fully booked for 2016. I can’t say that I’m surprised. He is one of the first doctors in the US to do lymph node transfer, and the only one in the midwest. It’s probably for the best anyway. The timing worked out alright because I had every excuse to eat everything in sight over the holidays. My motto became, “I’m growing a boob”, as I worked to gain belly fat. How often does one get the chance to want to gain belly fat, after all?!!

So, I’m fattened up and trying to mentally prepare myself for the difficult recovery I will face in January and February. Andy booked a condo a couple of blocks from the hospital in Chicago for just over a week on VRBO (vacation rentals by owner.) With a name like that, I jokingly tease him that this can be our ‘second honeymoon.’ Our One Year Wedding Anniversary is on January 1st!!! Our first honeymoon included dragging my kids along as we traipsed around North America. He believes that I still owe him a honeymoon. For some reason, though, he feels that renting a condo in Chicago in January for recovery from surgery is also less than romantic. Huh? I guess I’ll just have to keep trying every year until I get the honeymoon thing right. My goal=perpetual honeymoon….

I keep recalling the quote that “it takes a village.” So, here I am, calling on my village. I am going to face 12 hours or more on the operating table, 5 nights in the hospital, another 3 nights in our “vacation rental” so that I will be in Chicago for my one week follow-up appointment, and a solid 6-8 weeks to recover. I am going to need help. Mainly, I am going to need help with my kids. I’m calling on my village to check in on my kids while I am out of town. I’m calling on my village to help me back on my feet. I’m calling on my village, people. (I just like saying that-it conjures up a mental image of the Village People, and I’m not even on pain pills yet.)

 

Foob Decision

Foob indecision, I should say. My thoughts on the topic of breast reconstruction change daily. Some days, I feel like I’m done with all things related to breast cancer. Other days, though, I feel the need to finish this journey, and face reconstruction. It’s a difficult decision. I do not feel “incomplete” in any way. I feel strong and healthy, and I’m at a very happy point in my life. As I’ve said all along, I’m not a vain individual, so my physical appearance isn’t dictating what I do next. How I feel will dictate my next move. Deep down, I would like to complete the process.

Two years ago, I had a double mastectomy. One year ago, I had one implant removed due to infection. I am now living, lopsided, with one implant and one flat chest wall. Though I feel whole, the journey feels somehow incomplete. Every day, I have pain and tightness in my chest and ribs from scar tissue and radiation damage. The swelling in my arm from lymphedema is also a struggle. Inevitably, each time I see my doctors, they gesture at my partial reconstruction and the question comes up, “what are you going to do about that?”

To reconstruct or not to reconstruct, that is the question.

Honestly, I do not know the answer to that question. Like everything else along the way, I face several options, each with their own pros and cons. One, do nothing and live with one “foob” and one “not-foob”, swapping the prosthetic between bras and swimsuits as needed, or skipping it and going awkwardly foob-less. Two, remove the remaining implant and go flat and fabulous. Three, face additional reconstructive surgeries.

Avoiding surgery sounds nice, but would mean accepting a lifetime with a prosthesis, which, frankly, is a bit of a pain in the ass, and quite uncomfortable. It is awkward dealing with the prosthesis in the locker room or when I sleep at someone else’s house. I occasionally feel that my desire to avoid surgery is a cop-out based on fear of facing something difficult. Removing the current implant would be a relief. I do not like it. It feels uncomfortable, gets cold, and does not look very boob-like. Getting rid of it and going flat crosses my mind often, though then I may be stuck fumbling around with two prostheses, because I am not comfortable enough to go out in public without “something” there. Doing the surgeries to complete the reconstructive process does hold some appeal for me.

At this point in my life, I had wanted to be done with surgery. Between 2012-2015, I have had six surgeries . My kids were only 7 and 9 when they witnessed my first surgery. They have been there to help me recover from all six surgeries. I do not want their childhood memories dominated by pain, weakness, and their mom’s inability to keep up with them. We have already faced a lifetime of “I can’t do that.” How can I teach my children that they can do anything if I am constantly unable? I am also trying to teach my children to face fears and do difficult things to achieve the things that they want out of life. Can I encourage that if I’m avoiding this next step in my journey?

Do I want to have a normal appearance? Of course. But realistically, I lost that two years ago when I had the mastectomies. “Normal” will never be fully regained. Reconstruction can go a long way to give me a decent appearance while fully clothed, but that is not the same as getting my body back. My body will never be the same again. I am growing stronger, but I still have limitations from multiple surgeries, radiation and the effects of lymphedema. My priority is the ability to do activities with my children. If the surgery I am facing can relieve the lymphedema and restore strength I lost, then it may be worth facing that adversity.

Again, like art, I am a work in progress.