Evidence of Acceptance

It feels like optimistic progress. No more Aquaphor. No more ABD pads taped to my skin covering my disfigured right chest. A deeper acceptance seems to be developing as I now look at and touch the edges left by the scalpel; look at and touch the reddish purple shiny skin graft that a 5" x 9" ABD pad just barely covers. "It's looking very good," Dr. Fairweather said at my 3-month follow-up appointment yesterday. It is. I know it is.

There is a sense within me of optimistic progress emotionally too. Perhaps my grief journey is transitioning to acceptance. It doesn't escape me that this is answered prayer; my prayers, and the prayers of others as they ask how they can pray for me. "The physical healing is good but emotionally, well, not so much. Please pray that I will be able to embrace and accept what is physically healing," I say each time.

At the Dana Farber there is a boutique catering to women in need of wigs, compression garments, and breast prostheses--it is called Friend's Place. Reading through the benefits of having a breast prosthesis is educational. Who would have thought a well-fitted breast prosthesis helps prevent muscle-skeletal issues. Without one, problems can develop like back, shoulder and neck discomfort from the body not being properly aligned. It will protect the surgical site and provide warmth. Once Dr. Agarwal writes a prescription, I can get an appointment to be fitted and then it takes 6-8 weeks to complete the process. It's good news to read that Medicare covers the cost of special bras and prostheses since it is considered medically necessary.

My immediate inclination is to send a message to Dr. Agarwal, ask for the prescription, and make an appointment. But he told me no prosthesis for six months. It's too early to start the process with Friend's Place. Luckily it's still early spring. Layering with a lightweight jacket helps hide the deflated look of my right chest. 

Surprisingly there is a website that comes up from searching for breast inserts. There are pictures of what they describe as "a lightweight alternative to your breast prosthesis." Perhaps this will be an option until Dr. Agarwal writes that prescription. For $12, it's a no brainer. Turns out the largest size does not match my left breast but a couple of ABD pads under it works well enough for the occasional trip to the store for sure. 

Every optimistic step is evidence of acceptance. My heart overflows with gratitude.

Two Steps Forward …

Two steps forward, then back one. Isn’t that the way it goes sometimes? Uncovering my surgical site to air felt so good, like progress. Then a few days ago, as Caroline greased my chest with Aquaphor, she pushed her glasses up and looked closely at the tender redness all around the incision. “I don’t like this, Mom. It doesn’t look right. There’s like little white spots.” She took a couple of photos and uploaded them to my Brigham & Women’s portal. We expected a call the following morning since it was sitting in my portal for them to review early in the day. 

As the day progressed, discomfort increased. Concern increased. The reply to my message said someone would call me that afternoon. When 4 o’clock rolled around and no call I was so disappointed. Another night to endure with no answer. Of course, by that point I was in the self-diagnosis mode. Suspicious of a yeast infection, Google confirmed yeast infections can happen after surgery. Now I was even more desperate to begin treating it. I sent another message that evening with an urgent tone, “we are very concerned, please call me.”

The following day, I waited and waited. Discomfort intensified. I couldn’t escape the smelly feet odor emanating from under my shirt. It seemed more potent as the day wore on. Worry was unavoidable. By 2 o’clock I called the office. “They are in clinic today but I’m sure you will get a call. I will let them know you are anxious to talk with them,” the compassionate voice on the other end said. At 4 o’clock I was becoming unhinged. “I can’t go another night without treating this,” I said to Caroline. I called the office again. Of course, the answering machine and the dreaded our-office-is-closed-if-this-is-an-emergency message played in my ear.

In my desperation, my only choice was to page the on-call plastic surgery resident. Surely someone could call in a prescription for an anti-fungal ointment! By the time the resident called, I couldn’t hold back tears nor disguise my frustration. As I spilled out my sob story, my phone beeped. I had another call coming from a 617 number. The resident said she would call back and make sure I had been helped. 

Finally after two full days of trying to get their attention, we had prescriptions for oral medication and ointment to treat the infection. That night, I was back to Caroline taping ABD pads to cover the surgical site once again. So much for two steps forward!

Oh, and the resident, true to her word, called me an hour later. I apologized for being so emotional and thanked her for caring enough to follow up with me.

First Touch

I couldn’t stop thinking about what sleeping was going to be like now that I am bandage-less and bra-less. As I stood in front of the bathroom mirror for my nighttime routine, I glanced in the mirror. The slightly inflamed top corner of the surgical site jumped out at me, exposed from under my button-front pajama top. I audibly gasped at the unexpected sight. Tears flowed once again. Staring at me was the truth that this is my body now, for the rest of my life. There’s no running away from it.

I cried as I brushed my teeth, choking back sobs. I cried as I sloshed mouthwash and spit it out. I cried as I pulled the covers down, and as I crawled into bed. I cried out to Jesus, to God, “I need your help. I can’t do this on my own.”

Thoughts of how God’s heart was sorrowful at the sight of my predicament seemed like the release of a time-released capsule that gave me comfort. It occurred to me how hard it was to use words to pray through this, but my groans of despair reach the throne of grace. “The Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans.” (Romans 8:26) The promises are true, I’m not alone. The Holy Spirit is with me making sure my pitiful attempts to cry out to God reach God’s ears and express exactly what I am at a loss for words.

This morning I woke up thinking about taking a shower. There was no bandaging to remove, just turn on the hot water and step in. It was true that the transplanted skin on my chest would need Aquaphor before getting dressed. It was also true that Caroline would not be up that early. I would have no choice but apply the Aquaphor myself.  

That’s exactly what I did. God gave me the courage to explore what is left from the surgeons’ radical procedure that saved my life. Courage to look. Courage to touch. Courage to massage Aquaphor onto the transplanted skin. Clearly answered prayer.

These warm days tease—spring weather is fast approaching. I long to go for walks. Build up my stamina and strength again. Yet it’s not time yet. The flesh wounds are still healing. All in good time. I’m making progress every day and so thankful.

58 Days Later

Today is a milestone to commemorate. After 58 days of chest ABD pad changes and irritated skin from paper tape, I now must uncover and expose the ugly surgical area to the air. Oh, it’s definitely a positive on this road to recovery yet somehow I liked that it was covered. It has been 5 or 6 hours now, no stretchy front closure bra under my sweatshirt. No itchy tape on my neck. Only one breast and the remnants of incisions and the discolored surface of skin that used to be on my right thigh. 

One would think it would feel good. However, now the sense of a plate of armor where my right breast used to be seems pronounced. I think the uncomfortableness of the paper tape pulling on my skin distracted me from what is actually left behind after this radical mastectomy. I don’t like it. I still don’t want to see it. It’s inevitable now. There’s no ignoring it. 

It will happen. I will eventually take care of it myself, cleanse the area, slather it with Aquaphor. No, I will. For now, Caroline is patient with me. She will continue to gently apply Aquaphor. She will continue to see it, touch it, take care of it. “When you’re ready, Mom,” she says.

Fifty-eight days after surgery, I can go a day without shedding tears, and I am pain-free and very thankful. Somehow an optimism is creeping into my thinking. Optimism that a day will come when I will be adjusted to this new body, that I will make peace with what is left in place of my right breast. 

Sunday Morning Musings

Friday night I went to bed with a plan. Since Caroline lightly covers my leg wound for sleeping, I planned to leave it on when I woke up Saturday morning, get dressed and for the first time in seven weeks, get in my car and go for a drive. My hopes of an early adventure were dashed when I discovered my son-in-law had parked his new truck in front of my garage and was still in bed. Even though I had to wait, by 9:30 I was backing out of my garage and on my way.

A sense of independence washed over me. Finally, here I was once again out of the house, on my own. First stop was the bank. There had been no cash in my wallet for over two months. Not that I needed any. It felt like one more confirmation I was on my way to getting my life back. The radio was off. I drove in silence with prayer on my lips. “Thank you God for all the little ways you have provided for this journey of suffering.”

In those moments driving through downtown Derry, an awareness of optimism emerged. I thought, “Maybe I can do this. One day, I will fully accept what the radical mastectomy left behind. I will be okay! I will resurface in my life physically healed and spiritually changed.”  

I have searched out and listened to sermons on suffering. My favorite by far is Tim Keller. He said the sufferings in life change us. Weakness turns to strength. Without weakness, there will never be strength. “We become a diamond under pressure,” he said. The Apostle Paul wrote that we glory “in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” (Romans 5:3-5)

The success of my Saturday morning adventure gave me confidence to return to church. Despite the growing discomfort of my leg, I basked in the love of my church family’s greetings and hugs. I sat in the worship service with an awareness that serving my creator will perhaps look different in what life I have left—in the months and years ahead. I silently prayed that I would have a keen awareness of God’s voice. I once heard someone say, “God speaks in the wilderness, there’s no distractions there.” 

One Glimpse

A little over two weeks has passed. I sit here imprisoned on my living room couch, right leg propped up on the ottoman finding relief from the sunburn-like pain that screams at every movement, even from flexing my thigh muscle. Moments ago I caved and downed an oxycodone with a zofran chaser. Just a few hour’s relief will hopefully be worth taking these drugs that I resist.

The thing is, my leg wound, the graft donor site, continues to be raw, red, and still has little spots where it bleeds when I cleanse with saline wound wash. I now keep it exposed 24/7 as much as possible which means I wear shorts all day and crank up the heat to 70 to make life just a little more comfortable. Dr. Fairweather told me the leg wound would be far more painful than the mastectomy site. He was right. Somehow I didn’t envision being almost 8 weeks post surgery and dealing with this raw skin. 

Caroline slathers it with Aquaphor after the evening chest dressing change and each morning I gently wash the area with saline solution-soaked gauze and more Aquaphor. On Sunday, the area seemed to me to  show signs of an infection brewing. I uploaded photos to my portal and got in touch with the plastic surgery intern on call. She was very responsive, looked at the photos, consulted with colleagues and reassured me everything looked normal, no concerns. Dr. Argarwal himself called me yesterday morning and reiterated that the photos look good, the wound looks normal for 7-1/2 weeks post surgery. So I trust the professionals and tend the wound, endure the discomfort.

In the evening of February 14th, after my last post, I gather the courage to take a shower and decide it is time to look in the mirror. The process of showering makes me cringe as water cascades over the empty, skin-grafted space and stings my thigh. My chest feels stiff, like a plate of armor has been installed where my breast used to be. I bend my head down and suds up the shampoo in my hair, my eyes closed, avoiding any chance I’ll see it in my peripheral vision. “I will look at it when I get out. Today is the day,” I resolve.

I wrap my hair in a towel and hold a bath towel around my shoulders. I stand in front of the mirror. All the logic swirls in my thoughts, “You have to see it, Donna. This is your reality. You can’t ignore what is, forever.” I resist, then slowly move the towel away. In a momentary glance I see a dark, purplish-red concave rectangle of flesh and I am horrified. I just wail at the sight, “Oh my God! It looks so horrible, Caroline!” She waits for me on the other side of the bathroom door. I cry like a baby, boohooing. I let it all out and realize this is the first time I truly feel the mournful truth of my predicament. I cry as Caroline puts new dressings on my chest and leg. I cry as I pull on my comfy pants and button my flannel shirt. 

In fact, I cry off and on for the rest of the day whenever that image flashes in my mind’s eye. Even now, as I write about this memory, I am in tears again. I’m not sure, but I think I may have had a couple of days in which I have not shed one tear, but only a couple. That horrifying glimpse was 17 days ago. I can’t bring myself to look at it again. Not yet.

Since that glimpse, I have had a follow-up visit with a nurse practitioner in Dr. Argarwal’s office. She exclaimed at how well it is healing. She debried the edges of the surgical wound. We no longer have to apply sheets of treated zero-form gauze on the chest graft, just liberally apply Aquaphor and cover it once a day. 

Caroline continues to amaze me with her ability to see and touch what I cannot bear to even glimpse. She is so gentle, caring, empathetic. Almost every time I recline on the couch and she proceeds to care for and change the dressing, I shed tears. “You’re doing so good, Mom. I know it’s hard. I’m so sorry you have to go through this,” she says. 

Still Avoiding the Mirror

The sun glimmers onto my bathroom vanity, deceptively giving a sense of warmth despite the windchill of eleven degrees outside the window. It seems a metaphor for my present condition. There is a sense of warmth that I can radiate to others even though deep in my soul a relentless storm swirls. Just as this windchill hurts exposed skin, the reality of my situation hurts my sense of well being.

Oh the physical pain is now only annoying discomfort after 4 weeks of recuperation, however, the emotional impact has me in tears nearly every day. I am tormented by the truth that I have to make peace with the empty space where my right breast used to be. The day is inevitable when I will have to finally stand in front of the mirror and allow my eyes to focus on what is left. This resistance is crippling. I am delaying independence. If I could remove the dressing myself (which I could certainly do but won’t because I don’t want to see it), I would have the freedom to take a shower on my own. 

When I contemplate what is behind this utter reluctance to stand in front of the mirror, this paralyzing fear, I know it is not rational. This is reality. Not seeing it doesn’t mean it’s not there. It is. I know it is. Somehow refusing to look at it postpones the inescapable truth that I will live the rest of my life with no right breast. 

Caroline says, “It looks really good, Mom. I think you’d be surprised that it’s not at all like you probably imagine.” I know she’s right. Yet, I can’t bring myself.

This week I am listening to a lot of Tim Keller sermons at the suggestion of my friend, Deb. As I’ve made my way through his series on Ephesians, I find encouragement. One titled “A Foretaste of the Future” is really a sermon about suffering. It is so inspiring, I listen again for a third time. My sense of gratitude for God’s loving provision overflows. Every step of the way, little things come my way that meet me where I am.

Reassurance wells up, “All will be well.”