(Cold but smiling at the start of what I thought was my last appointment.)
Today is supposed to be my (for real, again) FINAL doctor’s appointment related to my mastectomy and reconstruction. It’s been 5 weeks since the appointment I THOUGHT was going to be my final one. I think I’m finally starting to be okay with how that one went, even though I’m tearing up even as I write this (I still haven’t got my hormone replacement pills yet, so please excuse the menopause-level emotions.) How am I really doing? Friends have asked, and I’m ready to answer. It’s complicated, but at the same time it’s not, so here’s an update with all the details I’m ready to share with anyone who’s been wondering…
First, it was unexpected to hear that the reconstruction didn’t go as well as they’d originally thought. I’m not going to go into details here because I’m more private than that when it comes to my body, but I will say I’m never going to look as good as I did before, even though I was already a post-nursing mother of three. Some skin tissue died and will never be the same. My surgery and reconstruction were nothing like a breast enhancement. This was about saving me from getting breast cancer. They literally carved out my insides and then did their best to replace that space with a flexible implant that sinks into whatever crevice on the inside there is, and our insides have MANY pockets. This means the outside shows some of that.
Plus, the body is organic, meaning different parts heal different ways and at different speeds. It’s not likely that two asymmetrical spaces that had two differing irregular areas of tissue removed and then reconstructed, are going to look perfectly symmetrical after the first surgery. Even though the incisions had been made at the same spots on either side of me, one side healed with the skin pulling upward, while on the other side it healed with the skin pulling downward. In other words, on one side it looked like Captain Hook had cut me across the ribs. It wasn’t a nice scar hidden under my breast like I had been told to expect. I didn’t feel like myself or look like myself.
Even after a month, swelling was still subsiding, tissue was settling, and my body was reacting to the addition of these implants behind the muscle. In other words, I felt (and still feel) like I had prosthetic parts. Severed nerve ends made my torso and armpits feel like pins and needles were sticking into them without any warning, hurting and tingling. I learned patients and doctors call these “zingers.” Other times, I had something pushing against my chest and I couldn’t even tell- like when I carried 3 gallons of ice cream stacked on top of each other and leaned them on my body to balance them and I couldn’t even feel the cold! That made me laugh a little and sigh too. Sheesh. My body was unexpectedly different. No matter how much they prep you, they can’t prep you for every scenario, so each new moment of discovery can stop you in your tracks. Life is not going to be the same. It can still be good, but it will be different.
My doctor said to come back in 5 weeks to see how I looked then. There were other surgeries we could consider to get my breasts looking more natural. No guarantees because I was never going to look perfect, but it could look better if I wanted to explore those options. He just wanted to be thorough and make sure I was happy. I smiled and nodded but broke down inside. I was so excited before the appointment started to wrap this whole long ordeal up. My kids needed their mom back. My husband needed me. I NEEDED ME! But, although the doctor was hoping my healing would improve in another month, he still wanted to check and talk about further reconstruction surgeries. So I scheduled another visit. Then I went home, trying to keep smiling and be positive for my kids, but crying inside.
I wasn’t expecting any of this. At all. I was told originally that 10 days after this last surgery I would be jumping back to work and regular life. I would be back to normal, moving around, lifting things, and feeling great. This was outpatient surgery, supposedly much easier than the mastectomy. But a month later, I was still in a lot of pain and feeling just as limited as I did after the first surgery.
Since these procedures started back in July, I was SOOOOOO lookin’ forward to my last one and final phase of recovery. My husband and kids were too. Now I didn’t know what the future would bring.
You can’t imagine how much drearier January looked when I learned my much-anticipated last surgery was going to require more down-time for recovery, that my body looked and felt so alien, and that I was going to need ANOTHER follow-up doctor’s appointment. Even though my new doctor (I had to change midway due to surgery dates) said the pain I was still feeling was normal, I thought it was much more than what it should be based on earlier conversations with other medical staff. It was the surprise of the continued pain, unexpected physical outcome, and continued limitations that was starting to wear me out. I hadn’t planned on this. Six weeks post outpatient surgery and I was still in pain while trying to do the most basic chores. I hadn’t saved stamina to endure longer.
So, how have I been dealing with it?
Since my energy to adjust to setbacks was low, I learned to expect less of myself. I hoped my family and friends would understand. I slowed down and did the most important things. I tried to take time to read, rest, and watch movies with my kids. When I had to go somewhere I used that reservoir of energy to make the most of it. Then I would get back home and recuperate. My kids, along with my husband and mom, were troopers at doing the most essential chores so we had clean clothes to wear and clean dishes to eat from. But I let the rest of the mess pile up and chose not to worry about it too much. I’d have time for it when I was healed.
I took a break from social media, even though I still took pictures for my own enjoyment. I just didn’t share them as much so could focus on taking care of my family and myself while I allowed my body, heart, and mind time to heal.
I gave myself permission to cry when I wanted to and not do things that hurt when I could avoid them. It’s only been in the last two weeks that I’ve done my first load of dishes and laundry. Wearing a bra hurts. Sleeping on my side is still painful (which is hard to handle emotionally because it’s when I’m the most tired), as are most tasks that require any extension of my arms. I fake it well, but this recovery period is going to be a lot longer than I anticipated. For a homeschooling, dance-loving, hardworking wife, and mom of 3, that’s HARD!
I’m not trying to complain. I’m just being honest and real. I still feel very lucky to have had this option, even though there have been moments I’ve regretted it. There have been nights I’ve cried and told my husband, “Why did I do this to myself?” My family. That’s why. And even though the mom-guilt is high sometimes because they still can’t hug me without being cautious, I have to keep the faith that things will get better. I have to keep my hope. Most of all, I need to be happy about everything I still have.
But I’ve also had to process the shock. I had already been mourning the loss of parts of me after having a hysterotomy and mastectomy. Post-reconstruction, January and February also brought a new sense of mourning at the loss of feeling normal—even after the implants were in. I thought this surgery would fix me. It turns out “fixing” me wasn’t going to happen physically. It was going to have to happen mentally.
Little by little, I think it is. I don’t check my incisions daily anymore or the shape of the implants, like I was at first. I don’t completely force myself to avoid looking at them either. There was a season of that too. Some days it was just too hard, so I learned to only let myself see what I could handle. That was my way of dealing with it, and it was the best I could do. That’s okay. I needed that time.
I had to learn to trust my doctor, to give my body the time it needs to heal, move, adjust, and relearn how it moves and feels. Some parts will go back to how they were. Other parts won’t. It’s hard to be in limbo and not know how I’ll be in the end, but at the same time, it isn’t. I know I did what I felt prompted to do. And even though there are moments I doubt that, when I’m calm and have clarity I know it’s true. Just because it’s still hard now, doesn’t mean it was the wrong decision. Just because God told me to do it didn’t mean it was going to be smooth and without its challenges. It just means this hard road is the one I was meant to take, to give me the experiences I needed. I also think it’s smoother than any other path I could have chosen.
None of us is guaranteed anything from this life except the opportunity for joy, and that is ours to receive and create. For some, life it is unbearably long. For others, too short. Some walk during all of it, while others never walk at all. I know I took my health, flexibility, and mobility for granted. I know I wasn’t more grateful for my ability to dance or run. I wish I could swing my arms up like I used to and swing them around. I miss moving freely. There are so many days I didn’t exercise, and I could have. But I made excuses. I STILL DO! I’m still too scared to push myself because of the pain and discomfort, because trying to move reminds me of how different my body is now. But I’m working on it. I’m trying every day to receive the joy that surrounds me and create more.
So how am I doing? Really? As you can see, it’s complicated. But it also isn’t. I’m doing great. I’m here. I’m alive. I can’t do everything I used to be able to do, but I can do enough. So really, I am wonderful! I am blessed. I am grateful. I am happy. I am beautiful.
I am who my Heavenly Father needs me to be—scarred, healing, and stretching herself. When I see myself through His eyes, I don’t see the extra weight I’ve put on over the last six months or my misshapen parts, I don’t even mind the pain I feel just sitting up while I write this. I see a daughter of God doing her best to give her will over to Him as she fulfills her duties as a wife, mother, and disciple. It’s taken some time and perspective, but that’s where I am now. They might have taken away my body’s ability to have kids and feed them, but my body is still doing all it’s meant to do today. I’m strengthening myself and others through my experiences, words, and photos. In other words, even with everything I’ve lost—my ovaries, my breasts, my range of motion—I’m okay and that’s enough.
In fact, I’m going to call and cancel my last follow-up appointment right now. I don’t need more surgeries. I don’t need more reconstruction. My body is perfect for what it needs to do just the way it is.
P.S. Here are some photos from that last appointment…me with my favorite bonus about these visits- pellet ice!! And the silly-time with my spouse. Without him these appointments would have been unbearable, but with him at least some moments were entertaining. (Yes, that’s my scarf.)