Technicolor Hormones

After a bilateral mastectomy removed the cancerous tumors and precancerous tissue. After four cycles of chemotherapy and bone marrow infusions to kill any other remaining cancerous cells and to kick start menopause. To improve my chances staying in remission, I need to subject my body to hormone suppression and hormone blockers. A couple weeks ago, my eyes had some flaring. In conjunction with increasingly blurry vision and extremely deprecated night vision, I felt it necessary to talk to my oncologist. She sent me to my ophthalmologist right away. Not only did my prescription change, I have cataracts and extremely dry eyes. This is my first tangible chemo scar since the hair loss. This also forced my oncologist to change direction with hormone treatment.   

These past few months of no treatment have been intense. I’m grateful for having the physical break so my mind and heart could start catching up. I am painstakingly processing a tremendous amount of information at every angle in life. It’s a lot. There are days I am hanging by a thread. Yet, I don’t cry. My brain feels like someone opened the window and the table full of my handwritten manuscript, blew everywhere. I’m sitting at the table and staring at my entire life in total disorder. 

When I first met her, my oncologist had an entire treatment plan. She respectfully and politely explained the common course of treatment for my markers. The courses of action were explained, and the physical side effects described. After our first meeting, I knew endocrine therapy would be the last stop, five years from now. 

I have carefully done my homework. I've spent a lot of time reading medical journals, dictionaries, and medical textbooks. Anytime it got too heavy or scary, I stopped. I tried to relax and not stress about the pending treatment, but all the while in the back of my mind was this giant elephant. 

When I was 18, I went on the trendy birth control shot, Depo Provera. I was on that regimen for a year. The sweet spot for long-term side effects. The only reason I ended use was because it turned out I was allergic to it. The reaction I had could have potentially killed me. I refused to take any kind of birth control after that.

When I was 24, I was diagnosed with PCOS. This was my first introduction to endocrine treatments. I was prescribed a series of Clomid to help with trying to get pregnant. It didn't work. I gained 20 pounds, had chronic migraines, dealt with some depression, and a few other minor irritations. I wasn't on it long enough to really see major impacts, but it was enough to entertain for the situation. Through natural methods, I was able to have three more children.

Not long after I had Ben, we had to medically manipulate my hormones again. This time because I had an influx of ovarian cysts populate in my uterus. Over the course of the year after he was born, I didn't have an active and intense period for about two months. Ten months of a period. The doctor wanted to put me on birth control to help regulate. We had a significant debate.

Through compromise, I agreed to entertain an IUD with a low dose of progesterone. We elected to use Mirena. Vainly, I was vehemently against the mere idea of gaining weight. Dealing with the side effects from the Mirena were weighed against the side effects of my cyst filled uterus. He asked me to give him 6 weeks with the IUD to evaluate. We scheduled the IUD placement and the follow-up visit. Six weeks later, we were taking it out. I gained 15 pounds and there was no change.

Ultimately, I opted for a non-surgical procedure to take care of the problem. I didn't want to undergo any type of hysterectomy, so the uterine ablation made the most sense. The ablation would give me relief from the cysts for at least 5 years (there's a theme with that timeframe). If the situation returned, I would be faced with the decision for partial hysterectomy. Today, I still have my uterus!

Needless to say, I don't have a strong track record with hormone manipulation. When breast cancer showed up and pathology indicated my breast cancer loves hormones, the irony was not lost on me. To keep the cancer from growing again, the treatment plan calls for killing estrogen and progesterone production in my body. With my body's history of not playing nice with endocrine therapy, I am extremely uncomfortable.

If you aren't familiar with the way your hormones impact your day to day, I strongly encourage you to get that way. Not only does estrogen get produced in your ovaries (ladies), but it is also created in your adrenal glands and fat! My ignorance thought it was all coming from one spot! While the chemo did the job of starting menopause, the hormone suppression/blockers will take care of the rest of the localities. It's said that menopause takes five years. The plan is to block hormones and suppress hormones for that duration.

Side effects of doing this are:
Nausea, bone loss, headaches, weight gain/loss, mood swings, hot flashes, brain fog, sleep disruption, joint pain, cramping, brain function, cataracts, eye damage, skin changes, loss of libido, dry everything, blah, blah, blah, blah.

By the time I was sitting in front of my oncologist again, I had a lot of opinions and questions. We discussed my cataracts, and she identified that one of the drugs she planned on using would exacerbate that condition. Thus, she scheduled the Lupron (hormone suppressant) injection. The Lupron has more severe long-term impacts. Bone density loss, heart issues, severe depression, and metabolic syndrome. We talked about those. I expressed heavily the dependency I have on brain function and if doing this treatment plan would deprecate that, we would need to talk about other options. This led us to discuss the compromise.

I asked how quickly I would start to see/feel side effects after I started the injection. Since I would know how it would make me feel within a couple of weeks, that would give me enough time to decide continuing the therapy or not. The length of time I would need to take the daily pill would still be the five years. Depending on what my levels looks like in my bloodwork, I could potentially not need the hormone suppression. Before surgery and chemotherapy, I was already premenopausal. I left that appointment with an injection date scheduled and the oral medication ordered.

Lab results came back AFTER I got my first hormone suppression injection and indicate that I am in fact POST MENOPAUSE! The oncologist called me last night and let me know that I won't need to keep doing the injections. She's going to have me do one, possibly two more injections and then I'll start the daily medication on the first of January.

At this point, everything I’m doing is to add as many years as possible to my life without fighting cancer again. The trade I have had to make is shitty. Doing the endocrine therapy will improve my time without cancer by about 15%. I’m following their direction to achieve the same goals! I’m now in the next phase of seeing how I tolerate things. It’s my hope that this will be minimally impactful. The pile of daily symptoms I’m now accepting as part of my new normal will evolve and I’m coming to terms with it.

I am so happy that the Lupron is going to be short-lived. That one had me the most distressed. Fingers are crossed tightly that the side effects from the daily pill aren’t too much to handle. But in all honesty, I am intimidated by the way this body is going to feel without estrogen. Learning the role estrogen plays has only increased my sadness and trepidation. The grieving continues. The acceptance continues.

The table has the pages of my life all over it and out of order. The story is still there. I’m putting it all back together, but the plot has shifted. The days will keep challenging me and forcing me to figure things out. I will. I always do. The next few months will give me new information to introduce to the chaos! I need a vacation.

Part Three: I Can Do Hard Things

My strength comes from necessity. At every point I have chosen the combative path instead of relenting. This hasn’t always resulted in optimal outcomes, but I believe I have learned each bout. As long as I can remember, I have been somewhat tenacious. That’s not a brag. I have a load of experience in how this has actively worked against progress. But even when you exercise wrong, you still build muscle.

I’m not sure which stage of treatment I was in where I recognized out loud that I was doing the damn thing. I was able to immediately recognize the dissociation I was actively engaged in. It felt like I was watching myself cope through all of this. As those layers of understanding became more refined, I recognized the dance I was having with reason and emotion. I was performing for my final evaluation.

As plans to support going forward with surgery and subsequent treatment came together so smoothly, I was nervous. I got scared that something very bad was going to happen because of how easy things were going. Stepping a few steps back, I was able to have the perspective to recognize I was doing what I have learned to do. It was coming together with ease because I was prepared to handle it.

I’ve spent so many years faking it until I make it, I lost sight of recognizing it when I got to the making part. It’s not until now that I see it. Feeling any sense of security was scary. Shit, any sense of security still terrifies me. I am skeptical of any rationality I can conclude in my own head. Making as many decisions as I just did without a partner has really validated my independence. My daughter was my perfect voice of reason and listened whenever I needed it. As overwhelming as it all was, it all made sense.

This is another instance of not taking away any shine from past moments of clarity. I keep seeing the upgrades in how I see things. Finally, believing my own bullshit that I can handle hard things feels incredibly mature. This is the most organized my chaos has ever been. The bigger picture of self-awareness has really healed the peace breast cancer held hostage. It’s my deepest hope that I continue to embrace all these changes.

When my emotions unloaded their essays of sentiment after my last surgery, I sat for hours dumbstruck by reality. I was nervous I wasn’t going to recover quickly from this surgery because I was now post-chemotherapy. When I was up and moving within two days, I felt the relief of capability. I was doing it and it wasn’t beating me. This sucks, but I don’t feel ganged up on anymore.

Knowing what I have coming by way of treatment is going to leave these evolutionary shifts open-ended. Because of the way these past 10 months have progressed and the village I have, there will be hard days I know I’ll be able to endure. There are more very hard things coming. The only way to get more out of my life is to live it. I’m not done growing from this diagnosis. I’m grateful for the confidence (false or authentic) to feel capable. As I continue to protect my perspectives and use these newly enhanced coping skills, I am hoping to further improve my inner peace.

Please note: what I write comes from hours of reflection and thought. I meditate and journal my way through these experiences. What I present to you is a summary of sometimes very painful education. I would hate for anyone to read these things and interpret them in a way that demeans your own experience and processes. I hope you’re able to find relatability in a way that helps. Airing out my processes is part of how I cope. I’m very much a walking disaster!

Part Two: Understanding Acceptance (Emma’s Version)

Themes rang like bells throughout the year. Being an intimate partner with Grief, acceptance is no stranger. Each time I have come to terms with loss, I learn a deeper meaning. I have absolutely experienced grieving my identity. This time I had no one I could redirect blame. This time it felt very different. It continues to amaze me how this universe insists on specific lessons. In addition to feeling wildly inconvenienced by cancer, I immediately began wondering what the purpose of this was. At this stage of my journey, I believe acceptance is the center.

From day one, the speed at which I accepted the new nuances of being a cancer patient determined how quickly I was able to find any fragments of peace. This approach isn’t totally different than what I would usually do in crisis. What was different this time was each layer of acceptance was embracing my total deconstruction. I have spent a tremendous amount of time in the warmth of depression disguised as defeat. Every doctor’s visit introduced new elements of truth beyond my control to change.

As anger held control for a bit, I numbly signed paperwork. The tangible evidence of reality stared me in the face. The severity thickening as I drove away from my boys. The weakness in my stability to play with my granddaughters. The unpredictability of reliance frustrated me as my daughter and son-in-law prepared for big changes of their own. My passive dependence on my daughter. Her presence was instrumental in showing me the way to accepting things healthily. Seeing the evolution of our relationship allowed me to understand the big picture. I got knocked down from my tower quickly.

I have accepted the truth in the way self-control has fed my self-awareness. In no way does this equate to mastery. But it feels really interesting to understand the reasons why I’m this way. It’s interesting in the way that I don’t feel my previous feelings of confidence have become invalid. I have learned to accept that some of the coping skills I use are rooted in trauma. This doesn’t make them any less powerful. Understanding where they come from makes me feel a finer visual on why I am triggered. I feel like understanding why I do things makes it easier for me to recognize how to remove triggers more effectively. If not permanently.

I understand the role I play in my own growth. I am learning that simply surviving a crisis doesn’t equate to growth. Everything hard I have gone through before this, pales in comparison to the difficulty level. Accepting the root cause of Emma has opened new neural pathways. This helps me identify areas I can improve with more structure instead of anxiety inducing criticality. There hasn’t been a single day that I haven’t felt compelled to write something in my journal. I’m taking note of constant discovery.

There are months yet for me to live through before I will feel like I have fully accepted my new body.  Just because my brain has found the way to get through this doesn’t mean it’s going to be a cake walk. This is absolutely kicking my face inside out. The way accepting the reality of a bilateral mastectomy meant embracing body dysmorphia. The sooner I accepted chemotherapy was happening, the sooner I was able to accept my bald head. I get to choose how long I want to stay angry, sad, or anything non-progressive. It’s up to me when I want to see what it feels like when I’ve accepted it. This is a daily effort right now.

Accepting the entirety of what cancer has taken from me is a lesson in patience. The details of this are revealed in very weird ways. The usual ways to be physically validated have been removed from the list of acceptable forms. I am having a very real struggle with feeling pretty. This is just one feature of my insecurity. It’s going to take time. Being insecure isn’t new. I’ve spent years hating something about myself. My ego is extremely weak these days.

I need to accept the new version of my role as a mother. This will only take time, too. This cancer took the air out of a balloon I spent years inflating. The carelessness in my complacency left me in a state of shock over the absence of my children far more piercing than the cancer diagnosis. I am still learning how to be a long-distance parent. There will be mistakes learning this one. There is comfort in how things have gone so far. It’s not perfect, but it’s working.

If you would have told my younger self that I would battle cancer as a single mother, I would have wondered what I did in my life! At the start, that sentiment was absolutely going through my mind. There was a lot of crying in loneliness. The support and love I receive through calls, texts, cards, gifts, visits, etc. is a lifeline. As I advanced through treatment, it was the exactly perfect amount I needed. The acceptance of needing to be alone has been a really beautiful experience. Having the openness in my heart during this year has made so many things manageable. I am now able to recognize the need my spirit had for the quiet time. I was provided with the perfect amount of support in all its forms.

I would have preferred getting to this kind of understanding didn’t require such upheaval, but I’ve reached a point of accepting the truth in obtaining wisdom requires breakdowns of versions. I feel like my operating system has just gotten a giant upgrade with new levels and features. It’s up to me with how quickly I move through these coming phases.

Part One: Perspective

At this stage in life, I am much faster at getting over the ‘why me’ phase of a crisis. With the cancer diagnosis, my guttural laughter and maniacal voice screaming, “Of course I have cancer,” drowned most of the would-be pity party. My brain so quickly went into business mode. Years of experience stepped up and took lead. I didn’t have time for cancer. I had even less time for sadness. I left novels worth of emotions wanting for months. It doesn’t seem like a long span of time, but for two months I was intensely involved in each second of my world. The vice grip of that many major muscle movements in my life compressing my soul is still slowly loosening. When I finally was able to exhale after ten months of pressure and changes, the first things I noticed was how much my view of my world was altered.

One by one, I watched my coping mechanisms dwindle into obscurity. They were pulled away from my hands as I screamed like a toddler. Within a few weeks of diagnosis, I discovered that my usual tools used to survive catastrophe were no longer effective or I couldn’t do it because of the cancer or therapy. This forced me into an awakening I wasn’t prepared for. Honestly, I have been somewhat arrogant in thinking I have things enough figured out that I can handle anything. My arrogance hadn’t considered removal of these skills I’ve spent years cultivating. Here I was in a battle with Goliath armed only with my substance.

I felt blind for months. Honestly, the vision is blurry even today. Since everything I was comfortable in was removed, I have had to look at everything differently. I felt stripped. Metaphorically and physically. The haze came in the second I felt a surgeon’s marker on my skin. My body was no longer mine. My soul hovered over my body and watched in disbelief. When my body was done being mauled, my soul rejoined. No longer disconnected, but now everything is strange. Familiar like distant cousins.

I’ve written about the curiosity I have with getting to know the version of myself after cancer treatment. Living in those exact moments as I write this, feels a way I could not have even come close to have predicted. The discovery of who I really am, has been fascinating, exhausting, thorough, and dense with humility. One of the first new perspectives I have gained is experience in being both caretaker and patient. I want to hold my younger self tightly. I feel more connected to the memories I have with my father. They’ve evolved.

One of my favorite coping mechanisms is my instant ability to make the best of a situation. The gift of trauma. Flipping into business mode saves my emotional sanity. This is the root of my independence. The beating, breathing core of how I maneuver.  When those elements became harder and harder to manufacture, the depression came creeping out like a wolf to sleeping sheep. Vulnerability invaded like a vicious wave. Fight or flight kicked in and I reclused. I didn’t want to be a burden on anyone. I pushed through emotional torment alone and terrified.

The aftermath of such positing has revealed consequence by introducing me to a new version of me. It didn’t kill me. It has been hard to evaluate so much information about myself. With so much time in bed with my thoughts I didn’t have much of a choice. These days the norms I used to enjoy don’t quite scratch the itch anymore.

There were many surprises when it comes to how I found comfort. My bed was my cozy spot. The cuddle space with my kiddos. Crawling into the fluffy bedding has been where I got to feel best at the end of a long day. That space has been corrupted now. It slowly became a confinement and lost its luster. Many times, I found myself wandering around my house just looking for something to replace that feeling. How do you explain that to someone?  I was constantly worried that I was complaining too much. This just heightened my independence to figure out new ways to self soothe. Even if it meant weeks suffering.

I felt like I was fumbling through the entire process. Everything felt so disjointed and awkward. Typical of me to seek the center of attention, these were not conditions I felt comfortable having eyes on me. Not knowing what to do is awful by itself, let alone doing it with an audience. My boys were used to seeing me have all the answers and plans. Being unable to sustain that expectation, I hid. At the peak of this frustration, the boys were with me, so I created places to hide. There were many days I felt toxic to be around.

The boys displayed so much grace when I was disappointing in delivering activities that required more than I could muster. I beat the hell out of myself when I couldn’t do so much as go for a walk with them. Coping through crisis by going on little adventures with the boys wasn’t an option. We had to find new ways to enjoy time together cooped up. We had struggle moments, but we survived. Idle time introduced me to better communication with my kids. Cancer put a different perspective on my relationship with them. They see me more than I realized they did. I also see them with so much more intention in removing my biases. I feel like I see them better than I ever have.

I wonder now how much of this is relatable with my father. I imagine he did have similar internal battles going on that he felt much better isolating in and not sharing in them. I hope he saw me doing my best and didn’t fault my ignorance. This is all in my own head, but being so like him, I can’t help but feel that he did mental gymnastics just like me. Going from the one who took care of everything to near total dependence had to of taken a severe toll on him. While his cancer story is completely different than mine, I’m certain we would exchange a great deal of solidarity.

Things are simpler now. Simple in understanding, not simple in nature. Putting the world back into focus is taking me some time, but this is an exercise in patience not acceptance. I see the world with far less scrutiny. My opinions have altered so substantially that I can’t really be bothered with mundane. Small talk doesn’t interest me in the slightest. It feels interesting to find patterns in behavior. I see them quicker. This has made me somewhat petulant. I’m working on that.

I have found fascination in the relationship I’ve gained in survivorship. This one I’m only just now getting acquainted. If I’ve learned anything about myself this year, it’s my need to settle into acceptance as efficiently as possible. I feel empowered to be able to say I beat cancer. It’s mixed intricately with humility in ways I’m discovering daily. In the pursuit of being understood, survivorship puts me in a very specific box. It’s made introduction back into social settings a challenge.

Now I’m the girl at the party with cancer. Cancer is becoming a part of my identity. I’m figuring out how to have a healthy relationship with this reality. It’s going to take time for this to be part of my story instead of The Story. The teeter totter of living with a cancer diagnosis is a tether right now. I’m learning to accept this reality and thread it through my life instead. This is way easier said than done. People are lovely and I have been met with nothing but generosity and love. Without them, I would be telling a very different story right now. Finding comfort in being understood has become trickier than ever before.

Perception is reality. Never have these words been truer. My coping skill of finding the best in things got a major level up. It was deconstructed and instead of letting the emotions replace reality with delusion, I have found a new control in shaping what I permit to influence my view. My emotions and logic have found harmony. My coping skills are returning to me all grown up. The journey continues to be extremely independent and therefore making it a challenge to be supported. I don’t know what I need. I’m working through this new view on life and translating what I once knew into what is real now. I haven’t lost who I was before cancer. I am however, not the same.

“You never know what a person is going through, regardless of how much money they make or however great a life you think they're living.” – Terrell Owens

 

October 2024

Survivor. I’m a survivor. Never did I expect to be a Pink Survivor. Ever get so many things in your brain at once that the only solution is silence? For months the silence has been violent. It has been very frustrating to come to terms with this new me. A river of fast flowing emotions has eroded new perspectives. Some decent and some cynical. At the beginning of this, I was most afraid of who I was going to be left with when it was over. Perhaps it’s the fact that I’m now at the end and I’m so overwhelmed with it all that I can’t exactly find the words to describe how I’m doing now. The silence is numbing.

I’ve been waiting for some magnificent exclamation to notate the conclusion of this episode of Cancer. My doctors seem to be more thrilled about this than I am. I’m overwhelmed and can’t seem to find the actual point. Spoiler alert, there wasn’t one. I guess that’s why I’m unable to locate any celebratory emotions. I’m still looking at this situation like WTF? It still blows my mind to pieces to say out loud, “I had cancer.”

During these months of solitude, thinking is something I have had ample time to pursue. I’ve conversed with fellow survivors, read medical journals, watched vlogs, interacted with others going through the same thing at the same time, and a myriad of other vehicles of thought. One message that hung around is her perspective on her approach. She said, “I don’t have to, I get to.” Instantly I understood the mantra. There is absolutely a choice in whether one fights cancer. That is such a shiny way to attack chemotherapy, radiation, surgeries, etc. I’ve written about my own tendencies to find the silver lining in all things.

My life was exactly where I wanted it. The boys were just beginning their spring season on baseball teams. I was ecstatic to spend those three-four months at the ball fields with my kiddos and getting to make more friends for them and for us. Work was going full throttle, but in a mostly good way. I had just really settled into our house. My life was showing every ounce of blood, sweat, and tears. Crisis cares not for timing or convenience. Today, the boys are staying with their dad full time, work has slowed down so I can heal, and my house is full of evidence that more than just myself live here. In the matter of one doctor’s appointment, everything was gone. By the end of March, I slept alone in my house without truly knowing what the conditions were going to be when the kids came back.

My heart broke when I had to send the boys away. I have zero regrets of that decision. There is no way I could have successfully completed the treatment I have and maintained the levels of parenthood they need. There isn’t a time of the day that I am not weighted down by immense guilt. I know I did the right thing. It’s a real challenge to tell yourself to think a different way when the past 25 years of my life has revolved around the kiddos. Now that I have time to be selfish, I feel bad about doing anything without them. I feel guilty for missing every detail of their day right now. This one is going to continue to pain me for a while yet.

Guilt. Let’s talk about that a little bit. I feel guilty for not having a harder time dealing with cancer. The nightmares that I’ve known dear friends and family have gone through, I feel awful sharing anything about my lack of real nightmares. I tolerated chemotherapy very well. Was I tired and weak? Yes. Honestly, that’s the extent of most of it. The preparations I went through anticipating the side effects leave me feeling embarrassed at this point. I have unopened packages of supplies that I never needed. I’m beyond grateful that it wasn't harder. Please don’t mistake this as arrogance. The guilt has found a way to minimize my experience. Like, I don’t feel appropriate complaining about anything because so many have had it wildly worse.

For years I have had the ideology that idle hands are the devil’s playthings. Being unengaged in something productive has truly intimidated me into action. While I have had many days and weeks where I have done nothing, the guilt is its most vigilant. If I have time to be this “lazy,” I have time to be doing something to better myself or my situation. Well, here’s the shit of cancer treatment: there is a LOT of idle time. It’s been hurry up and wait since February. Since my last infusion, I have been battling frustration with wanting and ability being at odds. I have plans. But I’m just not quite able to commit yet. I’m still healing. Yet, I feel guilty for needing a day or three to be spent laying down and resting. It’s rude.

Today I am done with the hurrying up. Surgeries have successfully been completed. I have my new pair of boobs that I’m waiting patiently to heal. The surgery on Tuesday last week was quick and I have been recovering very well. I went to my post op appointment today and they’re very happy with how the healing is looking so far. The swelling is still significant and I’m uncomfortable, but I’m way better than I was with those god-awful expanders in. The liposuction they did for shaping and contouring my new boobies was a surprise! But someone recently told me there’s not much you complain about in this life. Extra liposuction isn’t one of them.

My hair is growing back and it’s super soft. I was hoping that my hair would come back all white. So far, it looks like it’ll be the same color it was before. The texture is the next adventure I’m waiting for. These days I’m just tickled that I can shape the hair with pomade!  I’m more and more comfortable not wearing a cap anymore. Just in time for beanie season!

I’ve lost all the weight I gained during chemo. It was about 15 pounds from the steroids. Right before this past surgery, I was actually wearing jeans again! I should be able to get back into fitted clothes again by next month. I plan on getting into the gym again. Gotta get this body looking better to match my new boobs!

This first Breast Cancer Awareness month as a survivor, I get to tell you you’re capable. It’s hard. Life is. It’s unfair and uncalculated. Cancer is unique to each of us. Yours is not mine. Mine is not yours. What worked for me may not work for you. What was easy for me, may not be for you. What I know for certain is cancer will level you. Cancer took away a giant piece of my peace. What cancer didn’t take away was my life. I get to keep living albeit under new conditions. What my next challenge is figuring out how to incorporate those conditions into what peace feels like now.

If you’ve been putting off a mammogram, schedule it. Now. If I hadn’t caught this early, this story would be very different. 

Happy Accident

The few months of having no kids in the house provided me the time and space to get some things done that I’ve wanted to. By the end of a workday and then doing mom duties immediately following, any home improvements outside of a little purchase don’t exactly get done. Then there’s the added reality that when they’re actively here, expenses aren’t spent on home stuff like that. Today, I walk through nearly every inch of my home and say in my mind, “I love it here.”

The little changes I’ve made and aesthetic choices I’ve made are feeding years of longing in my soul. I’ve given into the whimsy I hide. I like flowers and candles. No. I love flowers and candles. I want them everywhere. I want the entire house to feel like you’ve slipped into a fantasy novel. I’ve noticed that I’ve been slowly giving into that little girl that wants it, still. It’s been a lot of fun to say ‘Yes’ to these childish little wants.

Is it possibly tacky? Of course. That’s the spirit of it all! I have this cancer journey to blame to finally allowing my inner pink lover to explode all over my home office. Complete with pink rugs and pillows. My sweet friend threw up sparkly pink all over me and I LOVE it! My office now has been designed to look not far off from what a 17-year-old designing an office would do. Pink everything. Hard stop on anything fluffy though. Because while there is a sweet and pink little delight inside, there is also my inner Wednesday Addams. So, the office is pink and black. With spooky season coming up, I’m letting the touches start coming out now. Let’s just say I found pink chenille pillows with spooky white smiling ghosts.

The self-discovery that continues to unfold is less overwhelming and more welcoming. Less “Oh shit,” moments and more, “ya, I get that.” Embracing the ever-moving world is less traumatizing though, no less absolutely irritating and enraging. I’m less surprised. Not gonna lie, it may feel a little more cynical than usual, but it’s not negative. I’ll allow it. I think I’m allowed some cynicism at this stage. This sit down forced on me has been violently enlightening. I have zero choice but to accept who I am or go insane. Or address what I can with the wisdom I have to admit to having. Oof, sometimes responsibility is a jerk.

I came across a Tik Tok of a woman making fun of herself over the fact she still needs to talk about her cancer journey, though it has passed. “If I don’t talk about it, I suffered for nothing.” Instant poke to my chest. Relevance is something we really need. Whether its fed externally or internally, we need to feel relevant. If we can’t reconcile with bullshit internally, we naturally seek it out! At the risk of giving far too much credence to this newfound cynicism, sometimes shit just happens and it sucks.

At the end of the day, I have cancer and I’ll be dealing with this is some form or fashion for the remainder of my life. Whether it’s testing, treating, or cutting, I will need to worry about a shoe dropping for this, until I die. I have long since come to this understanding. Still working on the acceptance, but I’m getting there. In the meantime, I am finding more solace in discovering my home aesthetic and feel. In the meantime, I’m going to have this shitty thing happen while I color with pretty markers. I’m going to turn this accident into something that makes me happy with how I handle crisis. I didn’t choose to have cancer. But I can certainly choose how it effects who I am.

 

 

Chemo Begins

I am now in my first 24 hours of being on chemotherapy. I am starting to come off the wave of steroids they pumped me full of and the nausea isn’t horrible. Thank goodness, I have kicked my habit into full gear of taking medicine to say ahead of it. So far, knock on wood, so good. There is an additional therapy I get 27 hours after chemo infusion to help boost the white blood cell counts in my system. It’s pretty wild what this treatment is doing. For 24 hours, the poison hits it all. Then the catheter device they attached to my arm triggers to replace the damage.

The series of symptoms I must be mindful of is daunting. I have a humidifier in my room. I have mouthwash to keep my mouth from getting dehydrated. Every time I wash my hands, I swish. I am drinking more water than I have in months. Not a bad thing. But good grief. Making sure I actually eat is proving to be more of a challenge than I expected. Mostly because I’m terrified of being nauseated and throwing up anything. I’m super hopeful I am able to keep the nausea controlled and not have to worry about it too much. But the underlying fear is there.

During the first infusion, I had my daughter with me (she’s the rock of my world right now!) and I’m so glad I wasn’t alone. I had nervousness about all of it. I didn’t watch the arm the nurse manipulated to get the IV set up and then began the chemo. Tears filled up in my eyes as I felt the cold liquid enter my veins. This is real life. Dammit. Two hours-ish later, I as done and headed back home. The anti-nausea medicine kicked in and wow did I feel tired instantly. I discovered that if I push through it, I only feel tired for about 20 minutes then I’m all good to go. That is nice to know. It means I should be able to handle work without too much issue. Again, knock on wood. It’s still very early and this is only the first infusion. It’s going to definitely get worse.

The boys are coming to spend most of the month of July with me. It’s going to be an experience for us all. Ben has been very honest with his opinions so far. Alex is showing me his strong man front (adorable). They are prepared for me to be tired and needing their patience on activities and energy. I am doing my best to keep the information real but reasonable. They don’t need to know every gory detail, but enough to keep them realistic in expectations. I hate this for them. I hate this for all of us.

This is the most fragile I have ever been. The ease with which tears develop in my eyes is frustrating. I want the full-blown meltdown, but alas, that damn optimistic person keeps it all at bay. The truth is crying won’t change a thing. This is my new reality for a while and accepting it is easier than wallowing.

Metamorphosis hurts. I imagine there is severe discomfort for the caterpillar. The metaphor of the butterfly is not lost on me. However, this is the first time I have put the metaphor into physical context. I am physically going through a wild and radical change. A sweet friend told me the person I am on the other side of this will be unrecognizable and trying to picture it now is not fair to my psyche.

The boys will witness the chemo doing its next level of work. They’re going to watch the hardest parts unfold of this metamorphosis. We’re going to learn some stuff together. I hope and pray this is a bonding experience and not a trauma that is difficult to overcome. Teaching strength is difficult to articulate, but best exhibited. They’re about to see their mom be a beast unlike they ever witnessed. What is even wilder about this idea is they won’t really know what they’re seeing until they’re adults.

The layers of acceptance continue to manifest. In truth, I feel like it’s gotten a little easier each time a new blow comes to pass. It’s funny what happens when you just throw your hands in the air and relent. The amount of “fuck it” I have running through my bones right now is fun and scary at the same time. Ironically my buzz cut grew a newfound level of that very attitude. I’m certain when the patchy balding starts I am going to have a relapse. I have my caps ready to cover it up and I’m considering having fun with wigs. We’ll see.

I have been documenting this experience on TikTok as well as here. If you’re interested in seeing the video posts, here’s the link:

Emma Stange (@emmastange6) | TikTok

Tantrum

It’s funny how we reconcile the shit life throws at us. We have this magic ability to adjust perspective to cope with whatever stupidity we’re faced with. Delusion takes center stage in the name of self-preservation. As a self-proclaimed optimist, I have made delusion an art. The knack I have at this stage in my life to find the sunny side of anything is truly concerning sometimes. These past couple of months, my brain has been processing so much input that I have a hard time nailing down any specific emotion to identify long enough to feel something solid. So, everything flies through my head like a drunk fly.

When I came out of surgery, the doctor was confident they were able to get all the cancer out of me. The lymph nodes came back clear. No radiation therapy required. I was told that chemotherapy didn’t look to be necessary. Shame on me for taking that and running to Australia with it! I did err on the side of caution because I have a severe tendency to get my hopes so high for something that the disappointment when it doesn’t come together, the crash is equally severe. I absolutely held my breath! Surely, I wouldn’t have to go through more trauma with this. The exhale I released when my oncologist told me I would need to start chemo came out as a scream.

The mastectomy was a very easy decision. By ‘easy’ I mean not difficult to make. There was absolutely nothing easy about the consequences of that decision. It’s sort of depressing how many friends over the years have shared the same sentiment on this choice as well. I’ve had countless conversations where the actual statement fell out of lips so easily it now causes me to truly break. “They’re only breasts.” The rest of that context includes other statements like, ‘breasts don’t make me a woman,’ ‘I’ll get me a perky new pair,’ etc.

Today, I was talking with a co-worker about the pending chemo and the words, “It’s just hair,” came out of my mouth. At the exact moment I realized what I had just said, I also truly felt my heart crack. My pesky optimism stepped in so fast that I wasn’t even permitted to let that feeling set. “My hair doesn’t define my personality!” Good fucking grief. Get pissed dammit! Before you continue reading, please consider what you’ve just read. In fact, reread it and allow yourself to understand how you truly feel about the notion of a mastectomy and/or chemotherapy’s side effects.

I absolutely hate my body right now. I actively avoid my reflection. There are mental preparation exercises I go through to truly look at myself. I close my eyes and allow my hands to get a connection to this change so that my own body doesn’t feel like it isn’t mine. Not feeling energy for quite some time has put weight on that I have worked my ass to keep off for the past 10 years. My hair was so pretty and full before. It has gotten flat, retextured, thinning, falling out, and just disagreeable.

That’s a lot of self-loathing right there. But it’s currently a portion of my perspective. Truthfully, it’s the smallest portion of everything right now. The ability to find the sunny side continues to prevail. Artfully, my brain manufactures such a curated perspective that it makes it nearly impossible to be pessimistic. I am noticing however, the little, loud voice of anger is manifesting in other ways. If I am mildly inconvenienced, I can feel my heart rate skyrocketing. Anger and Optimism tangle until either impasse or external input defuses it. Because of this, I have been extremely quiet. Never have I been this introverted. Deep thoughts brew in my silence that when I speak aloud, I’m truly uncertain of its contents. My tact is locked in a corner somewhere.

After I was scheduled for my first infusion, I was truly burdened with the timing of shaving my head. The hair loss is inevitable. I worried about what everyone would think. My kids. The grandbabies. How comfortable would everyone be with my new looks? Do I want to see chunks of my hair come out at random? Would I prefer to get a head start on how it feels? Thoughts, thoughts, thoughts. STOP. The argument was moot. This decision was also made long ago along with the mastectomy. Tears immediately streaming. It needed to happen right now. I called my daughter.

I sobbed the entire time. I recorded it for myself. The vibration on my head was oddly soothing. As the frame of my face became more and more defined, I recognized my family members. I saw my siblings and my aunt. I saw my father almost instantly.

That introduced a different layer to the tears. The hair tickling my neck and ears stopped feeling depressing and sank into catharsis. This isn’t so bad. Hello, Optimism! Welcome back. I cried some more. Dammit, I really am ok and handling this like a fucking rock star and this hair is going to reflect that. My precious daughter told me to stop justifying things I want to do to cope through this. She’s a remarkable human being.

As super strange as it is for me to not really want to be around people, it is my truest truth. The amount of people that I want to interact with, we do. I feel like I have the exact amount of human interaction I need right now. So, tell me why I am violently lonely? That’s been a super fun introspection to fumble through. Not sure I will be able to figure that one out though. It’s quite the mental pickle. My people bucket overflows with the couple of hours every few nights with my daughter and her entertaining family. Rolling around on the floor with those two cherub babies infuses my soul so intensely I get a headache.

Next week I start injecting my body with chemotherapy medicines to reduce the chance of there being a sneaky bad cell running loose, kill my insides so nothing feeds any possible sneaky cells, and put many more years to my lifeline. I am not happy about it. I in no way want to do this. Every fiber of my essence is throwing feral tantrums. The doctor and nurses insist they are going to do everything they can to ease discomfort. We will be in fairly constant contact to validate my statuses. Four rounds that end in the middle of August.

Bittersweet is going to be the reunion of me with the boys. We are so excited to spend time together. They will be exposed to some hard things. These sweet young men are excited to be able to help take care of me. As absolutely awful as this has been, the clear visibility I have to the loves in my life keeps that very angry portion of this journey at a healthy distance.

We women are so gentle with bad things. We are incredible at elevating hardship. I am amazed that we are so determined to nurture and we forget to be honest when the time is right. We should talk about the shitty things a little more honestly. I think we may find more and more in common with each other than we give credit. They're NOT JUST BREASTS! IT'S NOT JUST HAIR! These are connected components that reflect our insides, out! We buy swimsuits around our breasts. We buy necklaces to draw attention to them. They are absolutely a piece of my personality! I feel similarly about my hair. Nothing more than my hair truly shows you who you're going to meet at first glance. It's ok to let yourself be angry and grieve these resurrections.

 

 

 

 

Good Grief

There is no way I could have prepared for how this cancer experience was going to feel. The thoughts I had at the beginning are still relevant, which is interesting. I don’t feel like I’m necessarily at the end of this just yet. I do feel like I’ve gotten past the hardest part. Reading back on the post talking about this diagnosis, the three things that hit me hard are different now. Well, they’re at least unpacked.

The idea of being strong is entirely subjective. This is something I’ve come to understand better these past few months. Being told that I’m strong has had a different impact. At the end of the day, I honestly have no idea what anyone truly thinks of me or sees when they look at me. I know what I see and what I feel. What I’ve learned lately, is that we all see each other in ways we could never see ourselves. Isn’t that kind of rude? Our lives are spent torturing ourselves blind, seeking validation that can only truly come from inside. It’s cruel; the cliches surrounding us mocking our reality.

“We are a villain in someone’s story.”

“Beauty is in the eye of the beholder.”

“One man’s trash is another man’s treasure.”

“Perception is reality.”

We all have our different ideas of characteristics that make up the definition of a strong person. It is an honor that anyone sees me in a way that meets that idea. The way I’ve seen myself up until lately is more of a survivor who got strong out of necessity. What has come into focus lately is that I don’t give myself enough credit and perhaps I give into the imposter syndrome beast a little too often. I have not struggled much in finding enough water to fill the cup past half full. This chapter has been the epitome of opportunity and preparation meeting with a bang. All the trials before this has prepared me and I’m seeing it now. I think I have handled this all pretty well.

Having the boys with their dad has made this house very quiet. My sweet dog, Toby took a journey over the rainbow bridge this week. Which has made the house even quieter. I haven’t had this much quiet in my house in over four years. I can hear Toby’s foot tappies at night still. I can hear the kids walking around the house. But no one is here. This is the kind of quiet that can do one of two things. Drive a person to madness or drive a person to create. I am ironically going through this cancer journey quietly. But in a totally different way. I’m still processing this aspect of solitude. Being still and quiet with sanity intact is a state of being that I am not fully accustomed to but looking forward to growing to be. This experience hasn’t exactly required a shouting from the rooftop kind of meltdown. I’ve required the quiet to hear my thoughts and feelings with clarity.

The fear of dying like my mother is still something I’m working through. In all realness, this one has opened up into different layers lately. My normal is still reshaping. Grief if so wild. I continue to have a more meaningful relationship with people who are dead than I did when they were here. I feel like I understand my mother more today than ever. As I continue to process this new dichotomy with my mother, I will likely need to write a fully dedicated essay to that portion.

Each day, I am growing more and more acquainted with my new anatomy. If I’m being fully honest, I hate the way I look. I have undergone two expansion sessions with my reconstructive process. While I have the sensation of having breasts again, they are wildly different. Not having nipples is INSANE to look at. Instead of seeing fun piercings I had before, I look dead center at two lines across the center of my breasts. Like closed eyes. The incisions will fade, and the look of the scarring so far leads me to believe this will soften in the near future and not be so abrasive. However, I must get to that part first. In the interim, I’m looking at my reflection and convincing myself that this is the best thing I could have done for myself. They were literally trying to kill me. But, damn.

There are so many things that don’t get said out loud. Women tend to minimize strife. We don’t like to make too much of a fuss about the hard things. Seeming weak or incapable is tough for women like me to exhibit. I’ll go ahead and say the quiet parts out loud.

Being a single woman going through a fully bilateral mastectomy, I didn’t have the advantage of external perspectives or opinions to appease. Only my own. “They’re just breasts. They don’t make you a woman.” While that is absolute, I had a big relationship with them. I grew them to support life. They gave me curves that gave me confidence. They weren’t too big and weren’t too small. Just right. I loved them. It’s going to be a very long time before I feel like I will be comfortable being naked in front of anyone again. This part is really hard for me to wrap my head around. Maybe it won’t be so bad once I have the full reconstruction completed. Right now, I hate them. They’re weird.

Watching them go from nothing to something has been even more sobering. I can feel the ghosts of what was there. I can feel the sensations of nerves searching for what was removed. They went from being filled with little bits of air to saline.  I still get emotional when I touch them. I do just lay in bed and hold my chest and cry.

About two weeks after the surgery, I had the overwhelming impression the surgery was successful. I felt so much better. My color improved. My energy improved. My appetite got better and back to normal. I told my daughter that I thought the cancer was gone. I still feel that way. The healing part is still on-going, but I can tell the difference between the cancer ick and the healing discomfort. I am ready to get back to my life and put things back together again. That part is going to be the hardest part of this entire journey. On the other side of this cancer is an entirely new existence that I have never known. In all truth, I am immensely excited about it but dammit if it isn’t saying goodbye to something I have intimately known.

The crying I am doing these days is totally different. I’m so very tired of grieving. This is healthy grief. That’s what I have to keep reminding myself. This all had to happen. I have asked for it. Maybe not the exact way it unfolded, but I did ask for this. I am so in love with a song by a sweet song writer called Marielle Kraft called Good Grief.

Good grief
How many days have I been in this room
How many pages have I gone through
‘Cause I’m on my third pen trying to make it make sense
I’ve been lighter since I let it go
I got tired under the heavy hope
So I’m laying to rest the very last shred

This is goodbye to a bad thing
This is goodnight to a bad dream
Losing something I wasn’t meant to keep
This is better but it feels worse
This is healthy but it still hurts
Becoming who I’m supposed to be
I’m losing everything but me
This is good grief

Good Grief
I’m on the sweet side of bittеr
I’m on the green side of winter
I can see thе way out and I’m headed there now

Pathology

There are so many words that come to mind when thinking about the behaviors of those battling cancer. Having had a front row seat to my father’s cancer, I’m familiar with some of the details that are involved with such an event. The approach to cancer obviously varies depending on the type of cancer being treated, but overall, there are specific words typically associated with the patient. Fighter. Survivor. When cancer was said to me, those were the farthest words from my mind.

Waiting. Deciding. Waiting again.

The surgery went well. The pathology report was said to take up to two weeks to publish. It was two weeks to the day. I got the report on Friday the 19^th of April. I read through it and from the mild comprehension I have reading medical reports, it didn’t take but a few minutes to recognize the importance of some of the words used. The biggest question I wanted out of the report was the condition of my lymph nodes. Those were the details that presented the necessity for chemotherapy or not.

When I read the first three lines of the report stating, Negative, I was instantly relieved. The lymph nodes were not removed but sampled. There was no indication of disease in the lymph nodes. The cells sampled from the newer tumors were in fact diseased. All that tissue was removed successfully and with clean margins. No need for radiation! What came next in the report was more surprising.

I elected to have a bilateral mastectomy. I had both breasts removed of their breast tissue. The left side was the malignant side. The right was not indicating any issue. No lumps or suspicious tissue. However, they biopsied all the tissue removed, including the non-cancerous right breast tissue. The choice to have a bilateral mastectomy was not encouraged by the doctors initially but today I was validated in spades. The right breast was on its way to being a problem. They removed a lot of precancerous tissue that had over a 25% chance of putting me through this all over again.

There are still appointments set over the next few weeks. I have an appointment with the oncologist in a couple weeks to make the next decisions regarding systematic treatment and whether it’s recommended or not. She is still working on the Oncotype of the tumors. This is a process that helps her figure out what kind of therapy to use to treat it. The oncology surgeon today told me he doesn’t believe there is a need for chemotherapy but likely hormone blocking therapy. More on that part in a later post (I’m not sure if I will take that path yet or not.).

The surgeon doesn’t feel like he needs to see me for six months from now to follow up and do some scans. I said to him that this was the fastest treatment of cancer ever! One major surgery and I’m on my merry way. He agreed with me and believed that we are in fact looking at that scenario. I’m not ready to say it until I have my appointment in two weeks, but to say I’m very optimistic would be an understatement. Gotta hold on to the real potential of a shoe dropping, because I am still Emma Stange.

The reconstruction side of this journey has barely begun. The new normal for the next few months is here and I’m adjusting to the way it feels. The expanders that I have for this process are NOT comfortable at all. The swelling has pretty much receded and now I’m looking at a very mutilated chest. If I didn’t know that this is temporary, the sight would bother me more than it does. It’s not causing me to flinch anymore, so that’s nice. The next appointment with the plastic surgery team will be nice. I should hear from them this week to schedule my first visit to expanding these things to help prepare for the final surgery.

There are not enough ways to express the complete gratitude I have for my family and friends. I had three separate friends and family come to my aide without asking. The first three weeks after surgery have been a rebirth of the most chaotic nature. I’m still in shock. I have said this all along, if there was a convenient time to go through a cancer battle, it was now. The people, the time, the emotional state, the monetary position, the spiritual foundation, the love, and the peace in my being are all components that continue to provide me breath. I have started writing thank you notes which will take me a bit to complete with my arms being weak. But I can’t wait to mail them out. Without the encouraging calls, texts, cards, and physical visits, this story would not sound like this.

Because I have a few more months of inconvenient steps to get me back to good, the boys are best set for success with their dad. This part has been the hardest. For the past couple of years, I have had them full time except for school breaks. It’s been me and them. I miss them so much it hurts. However, I know that I am not able to be who they need just yet. Giving me this time to heal and recover has forced me to change my attitude. Initially, it felt like a punishment to have to send them away. I have been working through that sentiment and will continue to do so until it doesn’t put a lump in my throat. They are happy and doing well. They are safe and loved. It’s not forever. Thank God for video calling.

My attitude is good. I’m off all the pain medication except for a muscle relaxer, which I’m nearing the end of that bottle. The pain is not as bad as I thought it was going to be. Don’t get me wrong, this shit doesn’t tickle. It’s not kicking me down as heavily as I anticipated. The next few months are going to be unpleasant, but I’ll take these over months of chemo and/or radiation any day. At the end of this journey is a long weekend vacation in Key West with my name all over it. For those of you who said, “Cancer picked the wrong one,” you were right.

Aguish

It’s been one full week since the surgery. On paper, everything is exactly as expected. The incisions are healing properly, and my pain is adequately managed. My first post operation appointment went well, and I should have the drains taken out this coming week. I’m still anxiously awaiting the results from pathology to determine what, if any, treatment is necessary. I’ve been doing as best I can to take it easy. I’ll be honest, sitting still like this is not easy.

Today, while scrolling the vast internet, I came across a piece of art entitled, “Anguish.” It depicted the image of a woman on her knees, with her face bent over close to the ground. Her hands are on either side of her face. She is sobbing into a reflection of a pool of her own tears. It struck me like a knife. If you’re uncomfortable reading the raw and gory details of a woman post op from a bilateral mastectomy, please don’t read further. I tend to deal with the gnarly nature of life through the art of dark humor and unfiltered honesty.

The first exposure to my reflection was nothing short of alarming. Sure, I’ve seen photographs of what a woman’s chest looks like after this kind of surgery. There is only so much preparation one can conduct until the images are your own. I knew what to expect, physically. Emotionally? Absolutely not. My incredible daughter and loving best friend/sister were so encouraging and supportive. They were nothing but loving and gave words of praise. Inside my head, a full-blown assault of shock shook through my body. I have never seen such violence on my own body. It’s graphic. I’m slashed across the chest. My nipples are gone. The boxy shape of the expanders replaces where my breasts once were. The only thing recognizable in my reflection is my tattoo in between the two boxy shapes.

These past days have been up and down. I have good days and not so good days. I’ve had a couple of really bad ones. The pain of recovery is thrice over. First, the pain of the surgery itself. Second, the pain of the expanders. Finally, the pain of emotional overload. There are days I am so intensely overwhelmed with so many thoughts and feelings that it feels like I may explode. The mania of all of this has caused me to start anti-anxiety medication. I feel zero remorse in that decision. If I continued to try to do this on my own, I was going to lose my mind. So far, it seems to be helping a lot.

The other night, I took a shower. As I was leaning over and drying my legs, I caught a very different view of my new chest. The skin dangled in distorted ways. I hurried to complete the process of drying and then promptly sat down and sobbed uncontrollably. Anguish. My vocal cords rang notes I had not sung. Guttural groans and intense wails echoed the bathroom and through the house. Rage pulsed through my body and turned my face red and made my ears ring. I am deformed. I am amputated. The severed nerves pulsed through my chest searching for what was once present. I made full eye contact with my reflection and watched as I grieved.

Cancer. I have cancer. Cancer caused this. Could I have taken a less aggressive approach? Yes. The doctors strongly encouraged me to do a lumpectomy and radiation. They encouraged me to take hormone blocking therapy for five years post lumpectomy and radiation. They encouraged me to take a longer, yet optimistic, course to treat this cancer. Years ago, I had already made the decision to have a bilateral mastectomy given the circumstances. I have no regrets. But shit, this is hard. I wanted to get rid of the cancer as quickly as possible.

I am currently experiencing a very personalized version of hell. There is very little control I have in my life right now. I’m dependent on doctors to heal me. I’m dependent on treatment to work. I’m dependent on my family and friends to help me recover. I’ve had to make the painful choice to send my boys to their father to protect them from this. I’ve had to take a timeout from the career I have worked very hard to build. I can’t drive. I can’t use any of the vices I typically use to cope through stress. I’m raw dogging this experience and it’s rough.

One of my biggest fears prior to surgery was the very real potential of having to work through body dysmorphia on a level I’ve never experienced. I’ve had body image issues my entire life. I’ve been called fat. I’ve been told I shouldn’t wear certain things because it didn’t fit my body type. I’ve been told I’m too skinny. I’ve been compared to bodies I could never emulate. Long story short, I have spent the better part of the last ten years trying to be not only ok with the body I have but love it. Having reached a space of peace with my life so recently, only to have it completely altered, has been infuriating.

I will adjust to this. I have no doubt that I will be able to get over this and get to a new space of acceptance. But this just might be the hardest road yet. Because for the first time, I will be battling just Emma. Every time I see my reflection, I try to take my time and take in the optical illusion that is my new chest. It doesn’t feel real, but it is so very real at the same time. I fight against the intrusive thoughts with the silver linings I have found since diagnosis. This is temporary. These slices across my chest will eventually drift below the reconstructed breasts. The scars will eventually become a faded line under tattoo ink I plan to use to cover them. In the meantime, I see violence and mashed tissue resembling that of a Ziploc bag.

Phantom static electricity vibrates through my skin where nipples once were. I can feel the tips of them, though they are not there. I want to relieve the tension of the pulsating nerves with touch, but I’m numb. I look down at my body and can see straight to my lap without obstruction. I’m flat. There is some air in the expanders that gives some kind of shape resembling a breast, but it’s a far cry from the bust I once bore. This doesn’t feel like my body. Working through the acceptance is going to take a long time.

I’ve been through some ridiculous trials in my life. Some of it of my own making. Some of it is not. Nevertheless, this current chapter of my life is proving to be on the same level of challenge as losing my sweet Connor. While there is nothing remotely similar in physical impact, the emotional toll is. The biggest difference today is time and experience between these two events. I feel much more equipped to handle this. However, I am feeling such loss that is unseen to anyone. Sure, you can physically see that my body has changed, but there is a graphic experience happening in my head.

Throughout this journey thus far, I have felt more love than I ever have. People have really shown up for me without asking. How in the hell I ever thought I could do this alone is beyond me. There’s truly no way I could have. Having my daughter literally around the corner from me has been a God send. I am so grateful this happened now when she’s been able to help me out. She’s been instrumental in my sanity. She’s made the absolute best recommendations and has provided me emotional and comical relief. The first week after surgery, I had my chosen sister staying with me and her compassion wrapped me up like the warmest, tightest hug. My brother is here with me now and it makes me tear up just thinking about how amazing it is that he is here. Next week my best friend will be here to help me out as well. Love. I am loved and I feel it.

I have been blessed with the gift of friendship both long distance and local. An old friend from junior high lives here and we have become closer friends through this. I am so grateful for her. There are a few who check in on me daily and let me rant until I am done. There are so many blessings already received through this trauma. I see them. I feel them. I need every single one of them.

In all honesty, I don’t know how to get through challenges anymore without focusing on the outcome and the benefit. I’m grateful for that state of mind. It is certainly a tool I require to keep me from succumbing to the depression banging at the door. I’m a mere inconvenience away from curling into a ball and just losing it. At the same time, there is space to be given to the negative emotions I am truly entitled to express. My entire world was flipped upside down. It’s going to take me a little while to regain my balance and put everything back where it belongs. For now, I’m allowing some time to feel this anguish. This depression is warranted and deserves a stage. I’m confident in my ability to rein it in when it’s time.

Recovering from this has merely begun. There are still months of this ahead. Even without potential chemotherapy, the reconstruction of my breasts is going to take a few months. If you’re wondering if I’m ok, I’m not. But I will be. Everything just changed and there’s still so much more going on than what I’ve shared. What no one tells you about dealing with cancer is how isolating it is and how much of the battle is waged in your own head. This is hard. Very hard.

 

Anticipation Anxiety

December 2023, a tornado swept through Clarksville, TN. Over 100 structures were damaged or destroyed. My phone alerted me that morning to tornado warnings, which put my attention directly on the radars and online storm chasers. I’m not sure why, but I wasn’t terrified. I was calm and collected. I told the boys where we would go if it hit us and to stay calm. We looked out the windows. We tensed when we heard the sirens go off. We listened and the wind violently pushed the trees around in swirling directions. They were nervous. I was not.

The power went out. We gathered blankets and brought them downstairs and ran around the house looking for candles. It took a while, but it got cold in the house. Thus began a new level of anxiety. I was not in any way prepared for that kind of event. There was absolutely no reason for me to be calm. Yet, I was. Maybe my intuition knew we were going to be fine. Or perhaps the exposure to a monumental ignorance shut me down.

The following four days were uneventful. We sustained no damage to the house. We lost all the contents of our refrigerator, but I was able to make at least one meal on my gas grill. We ate out a few times. Honestly, it was extremely cheap from the grander perspective. Families lost everything that day. My youngest son lost a fellow student from his school. We were fully intact. We had family discussions frequently about the understanding of true gratitude. Every time one of them complained, they were reminded this was a little bummer and not a big bummer.

While they fretted over no television or internet, I was frantically making lists in my head of the things I wish I had been prepared to execute. There is no excuse for me to not have excellent disaster preparedness skills and tools. I have oodles of camping gear. Not one single battery charged lantern was juiced. Not one flashlight was easy to find. All my alternative lighting was aesthetic and not functional, but at least it smelled great while we were cold!

I come from a whole existence of preparing. My parents were food storage hoarders, and my dad was borderline a “prepper.” I know that every family should have a 72-hour kit for each member. Thank goodness we never lost water! It wasn’t easy to be creative for four days. We spent a lot of time in the car with the garage cracked so we could sit in the heat, charge our devices, and watch a show. Considering this now, that’s probably why I just had to recently replace the battery. Oops! My parents were in my ear the whole time chastising my laziness and arrogance.

This era of my life, I would say that I’m fairly skilled at managing a dynamic situation. Something clicks in my brain and maps out the path to mission completion. My brain starts categorizing efforts, strategies, resources, and assets all to shape the plan. It doesn’t take me long and I account for bumps and pivots along the way. But, it comes easily. I’m seeing the adjustments I need to make to accommodate my family more efficiently in the next event now, in technicolor. Which has come in very handy with my current event.

April 5, 2024, I will be undergoing a bilateral mastectomy with reconstruction. Within the next two weeks I will have another biopsy on the axillary lymph node. The MRI showed more tumors behind the first larger mass, that appear to be disease. It additionally showed abnormalities in the lymph node. As of this past Wednesday, the surgical plan is set. The pathology on the lymph node will be something that will be addressed likely through post operation therapies. The lymph nodes may be removed as well. That is to be determined. There is potential for both radiation and chemotherapy. The necessity of radiation will delay reconstruction with the use of implant expanders. I have requested skin saving and nipple saving incisions. The locality and severity of the cancer will play a role in the successful outcome of that endeavor.

The warning alerts are blaring. The storm is coming. The project is shaped. My brain is engaged.

Emotionally, I am a total basket case. My nerves are shot. My mood is erratic. I can cry or scream at the most minor of inconvenience. I’m unreasonable. I am not myself. The past couple of days I have spent relatively quiet. My journal is getting filled. Sometimes multiple times a day. My friends and family have been incredibly loving. It has been that support that has kept me focused on the important matters.

The hardest pill I’m currently working down my throat is the decision to send the boys to be with their dad. It is absolutely the right decision. Each day of working on that acceptance has been the bitterest and delectable taste I’ve ever experienced. Looking at their faces every day, I’m seeing different layers I hadn’t seen before. I’m being introduced to a sweetness they haven’t exposed me to. They’re upset to leave but understand why. We talked about it as a family.

When it started to set in, I looked at them. My chest tightened as I realized these little faces are going to look so different the next time I’m holding them. In that moment, I told them not to change. Don’t forget how happy we are. Don’t go backwards. Keep being amazing. Protect each other. Don’t forget who you are. This is the most painful part.

There is no fear of not beating this. I have many experiences this body was designed to have. There are daily awakenings that are good. My anxiety however, has never been this taxed. Having such a quick ability to formalize an expectation of this situation has been Olympic level gymnastics. My logical processes are cracked out and eating sugar. My emotional organization is beginning to splinter. I haven’t felt this fragile since learning of Connor’s pending arrival. It’s a lot. It’s the most. It’s terrifying I haven’t absolutely crumbled to the point of exhaustion. This anticipated anxiety is bar none my summit.

For My Next Act...

I wouldn’t be me if I didn’t write about the shitty stuff. Truth be told, I do this more for me than anything. I wasn’t sure when I would be willing to share this, but I’d rather be up front and let you share in the mania with me! If there is anything true in this world, it’s the reality that complacency is the breeding place for challenge. Can’t be caught too comfortable. At least, that’s what I’ve come to expect. Recognizing the cynical pessimism, it’s appropriate.

A few months ago, I noticed a change. That change started impacting a broader range of normal things. I’ve been a lot more tired than usual. My diet has dramatically changed. I made a doctor’s appointment to start hammering out the cause of things. When I was in there, I requested a mammogram. With my age, I was preparing for the dreaded “menopause” diagnosis. I had blood drawn, requested an endoscopy, and have my heart checked out.

Blood work came back in fairly great condition! Little high on the cholesterol, but meh. Then I had the endoscopy which showed a developing ulcer. Then the mammogram.

I was immediately scheduled for a biopsy, which was done last Wednesday. If you’re anything like me, waiting for information is the equivalence of torture. Late Friday afternoon, I got the lab results. I have been diagnosed with ductal carcinoma in situ (DCIS). Currently, I am waiting on the scheduler to set the appointment with the surgeon and oncologist. Yipee, I've got breast cancer!

The next actions will likely be an MRI to take a closer look at where things are. Fingers are white knuckle crossed waiting for this to get done quickly. Getting myself familiarized with new words and expectations has been a borderline obsession since Friday. I’ve read entirely too much, but it’s the only way for my brain to avoid emotions taking over. This one is a little trickier to manage emotionally. This time I'm not in a support role, it's me.

What has me in a chokehold is what I’m emotional about. I’m not scared of dying. There isn’t much to indicate that this can’t be kicked and go on with a lot more years. I’m furious. Like raging pissed. It’s interesting to me how much saying things out loud impacts the body. It wasn’t until I spoke certain things aloud that the violence of tears and hyperventilation took over. My sweet brother is a saint for being there for me while I had an emotional exorcism. I sounded nothing less than manic. My dark sense of humor is a petulant child with micro-outbursts.

This part is the wild part. Crisis is never convenient. It doesn’t care how happy you are. It doesn’t care how chaotic you are. It doesn’t matter if you’re healed and whole. It doesn’t matter if you have the time to figure it out. It doesn’t care if you are even capable to handle it. It just is.

A few things came out of my mouth when I flipped. They even scared me a little when they became real words attached to real emotions. In the spirit of oversharing, which I embrace fully, here are the major points that my emotional words identified:

1.      I am tired of being “strong.”

2.      Here’s yet another thing to go through quietly because I don't want to scare my kids.

3.      I don’t want to die like my mother did.

Those are areas I will be unpacking to get them healthy. It’s super awesome to know that people think I’m strong. Which, I won’t take that away from me. I do, however, call it something else. I call it survival. I haven’t chosen to be strong; it’s been a requirement. But the weight on my shoulders to just lay down for a while has been heavy.

The other two points I will work through privately. My journal is about to get worked out with thoughts. But, to those who go through hard things quietly, I see you. Keeping my children informed of this without scaring them is an artform. So far, I have successfully shared with the boys what’s going on. I felt it was better to tell them with a heavy air of nonchalance surrounding it. I say it frequently, “If I’m not freaking out, you’re not freaking out.” I’ll just freak out in the bathtub with the music playing a little louder than usual.

The part about my mom, that's the heaviest one to work through.

There is a lot more information yet to be shared or gathered on what will be the next actions. Surgery is obviously the first step. The extent is not solid. However, I have mostly made up my mind on what I want. That part isn’t super exciting to experience, but I don’t want to have to do this more than I absolutely must. I’m anxious as hell to talk to the people who are going to walk through this with me so I can get some logistics figured out. I need the plan to really be at more ease.

I am immensely grateful to have my daughter close with me for this. She has the same warped sense of humor that I do, and it’s nice to have that language to talk through some of this. Family is everything and now is the time for me to embrace them. I’m not nearly as intimidated by this as I could be if I didn’t have my kids here to hold me down. I am a very blessed mom.