Grief After Recovery

I hiked up a small mountain a week and a half ago, just three weeks after my double mastectomy. It felt good to do something that makes me feel like me. After I paused on top to enjoy the view and eat an apple, I started down, and it hit me that this part of the hike I was on mirrored the part of my healing process I'm in. I reached the goal. Climbing up was like chemo and surgery... single point focus, clinging to the earth... but this moment is exactly like hiking back down to the safety of my car, one foot on mud and the other on ice, the sense that both feet could slide out from under me at any moment and I would fall into the great abyss of sky which should hold nothing but possibilities now that I'm officially cancer free. It feels precarious at best. No one writes books about great descents. No one seems to talk about them either. I know this has to be normal. I mean, let's count the things I lost: 1. My sense of invincibility; 2. My gorgeous, long, red hair that used to make me feel like Botticelli's "The Birth of Venus" painting and will take four years to grow back, if it even grows back red again; 3. My boobs; 4. What remained of my youth or at least my pre-menopausal era of my life. I'm 48. I hadn't planned on going through menopause for another seven years. 5. The sense that I have any control over my life at all, because eating organic, using natural beauty and cleaning products, all the things you're supposed to do to avoid breast cancer bought me a metric ton of jack squat. 6. My femininity; 7. My sense of being beautiful and desirable. If dating was hard with boobs and hair, ugh! Fortunately, I'm grateful not to have to be tolerant of another person or to feel sexual pressures and expectations even if they are ones I impose on myself in a relationship. At some point in the future, I'll crave companionship and I hope intimacy, but even if I meet a wonderful man, what will that be like? An erogenous zone has been removed and now I have this body that tells this really traumatic story. These are big losses, and it strikes me as normal to grieve them. It feels just like grief... The first few weeks waking up and realizing right away that the parameters of my reality have changed and are not changing back... And now this time where if I'm pain-free and distracted teaching middle school or having an exceptionally great visit with someone, I forget sometimes for maybe even a half-hour at a time that all of this has happened. Then I remember and the horror of it all washes over me again. Yesterday, as I drove home from work, I found myself screaming in my mind, "OH MY GOD! MY BOOBS HAVE BEEN CUT OFF! OH MY GOD!", which I sometimes want to scream in staff meetings or in the lunchroom at work or at a family gathering. I managed to stop it and replace that thought with, "I am breathing. I am healing. I am breathing. I am healing." This is a moment for unwavering mental discipline, I know. When I put oil on my incisions, I say, "I love my body. I love my body. Heal, heal, heal," a few times. And yeah, waking up in the morning all cold and damp from hot flashing all night reminds me that hormonal balance is likely a piece of this emotional state. But, man, I feel traumatized-- completely traumatized. No one warned me that when it was all over, I wouldn't just revel in this jubilant victory, but that it would be more like a country that won a war, but still had its cities bombed... looking at the rubble and wondering how to clear it, how to rebuild. In the last couple of days, I found two strands of my old hair, and both times my eyes welled up and spilled over. I miss everything I lost. I just miss it so much and I want it back. I suppose it's reasonable to expect to grieve for as long as I do when I lose someone close to me, but I'm hoping I bounce back faster than that. I know I have reason to feel so much gratitude for having my life saved, and I do. It just feels like parts of my life were wrecked in order to save it. I'm weary. A couple days ago, as I walked through the parking lot to the grocery store, I just thought, "I don't feel like being a bald woman in the grocery store anymore." It's been less than two months since my last chemo. It's been four weeks and two days since my mastectomy. Since I'm BRCA 2 positive, I still have one more surgery to go, probably sometime in early May, a full hysterectomy. I know my definition of success at this point should simply be, "Did I continue to walk through it today? Yes? Than that is success," but I want so much more out of life than just surviving. It's coming. I know it's coming. I will accept my changed body. I will grow my hair back and feel more feminine and more beautiful. I will heal and regain my strength and my ability to do the things I love like kayak, bicycle, and ski. I have a six-day canoe trip with my soul sisters through Canyonlands National Park in July. I know life will be more fun again and my vitality will increase. The intensity of grief passes. But oh, this moment. This prolonged, seemingly ever-lasting moment. Sometimes I find myself thinking that if I could just immerse myself in the Hoh Rainforest, I would be okay... just bathing in the green light and the energy of life, cradled in the softest mosses, held in the arms of giant cedar grandmothers... I'll make that happen, too. Nature and beauty has always pulled me back from the edge before, and I'm thinking it will again. What works for you, people? What soothes your soul through this intense time of sifting through the wreckage? What thoughts? What practices? What places? And if you've been cancer free for a few years, well, how long did it take for you to feel solidly sane with just the occasional blue day? Because man, I thought this was pretty close to the finish line and it turns out that it's nothing of the sort.

kayaksbikehike, you are singing my song, climbing my mountain. It's been nearly two years out for me, and I still sometimes look at my chest (single mastectomy) and feel like, "What happened?" The shock of all of this takes a long time to process, and I'm not sure it ever really goes away. It's life altering. I mean: you/we have looked death in the eye. We've crossed a threshold, and most people don't get it, can't get the trauma of the diagnosis, the surgeries, the treatment, and, more long-lasting, the struggles of survivorship. I hear you, voice to voice over the hills.

Things that have helped me include letting myself grieve. Let the sadness come and go. I go to therapy and have been part of a support group for cancer survivors. I run 3 times a week and read a lot. I hike, go outdoors. Also, oddly, the process of gardening is something I find very fulfilling. There's something about planting a seed and watching it slowly grow that is very healing. I make plans to meet friends for dinner or the (occasional) mojito. I also ask for help, and state my own limitations.

Most important is self-compassion. There's no roadmap for your feelings right now: the only way out is through. Keep hiking, both metaphorically and literally, and reaching out as you have. Those are the healing parts of you that, even now, are growing roots. May they continue.

Jojobird

Thank you, all three of you, for your responses. Your understanding is balm. I was doing better each day and then had a setback four days ago. The day started off well. I had caught my bare-chested reflection in a friend's mirror and it surprised me because I guess I didn't expect to see it there, but this time instead of screaming in my head that someone had cut off my boobs, I laughed at myself for being surprised. When I went for a presurgical consultation for my preventative full hysterectomy, the new doctor read me my medical history and I just started sobbing. I had to give a blood draw like I used to before chemo. During an interview with an anesthesiologist's nurse, I had to sit in the same kind of chair I sat in when I got chemo and answer the same questions for the zillionth time. The whole appointment took hours longer than I thought it would and it left me with the feeling that my life was being consumed with this new development in my life. Yesterday, I had to get an ultrasound on my southern lady parts and was doing all right until the ultrasound switched to the colors and it reminded me of that moment in my breast cancer diagnosis and I started crying. Then, the sonogram tech found a mass in my uterus and for awhile there, I thought I might have uterine cancer. It turned out to be three fibroids. But that is the level of paranoia and that is how easily triggered I am back into trauma. The oncological OBGYN said that the vaginal walls of women on aromatase inhibitors are much thinner than regular postmenopausal women and that really freaked me out. I'm on Tamoxifen now but my oncologist intends to switch me to Aromasin when I've healed from this next surgery. I lie awake thinking about whether or not hormone therapy is the way I want to live. I started thinking about having a tissue paper vagina, achy joints, and broken bones, and I'm afraid to take this medicine, but I'm also afraid not to take it. I think about this time in my life when I had a hostile and delusional neighbor who threatened me and I felt the need to carry a handgun when I went running for a few months, but then a day came when I just didn't want to live like that anymore-- when I just didn't want to be fear-driven and carry that gun. Sometimes these hormone blockers feel like that to me... like I just want to not take them and try to forget that I ever had cancer... like I just want to let my body and mind find some kind of homeostasis. But taking all the action I can to prevent breast cancer from returning is what should give me that peace of mind. Sometimes I get so frustrated with the math of it all-- trying to figure out an equation that will prove I won't be one who gets cancer again. This is an interesting moment where there are decisions to be made about how best to go forward. Am I willing to sacrifice longevity for quality? Am I willing to sacrifice quality for longevity? In the meantime, I did find some peace talking with a Vedic astrologer that breaks down a lifetime into different periods and subperiods where certain things are supposed to happen. I'm in a double whammy time of chaos and things of a toxic nature and so I can tell myself a story where I won't ever be here again because I won't ever be in a double Rahu time in my life again. I figure healing myths are told in every culture, and it doesn't matter whether they are true as much as it matters whether they are healing. I know the intensity of this all will simmer down. It has to. Grief does. A couple months ago, I put a plan in motion to start a rowing crew of breast cancer survivors here in Wenatchee, WA, and got the rowing club and the Wellness Place on board to work with me. I have to heal from this next surgery before I can get that going. I wish it had already been in place for me to find peace on the water, exercise, and camaraderie with other survivors without necessarily retelling our cancer stories... just letting a lot of that common past be unspoken as we go forward together. Right now, I find myself not looking forward to it as much as I was... I suppose because I'm not feeling strong enough to lift anyone else up at the moment... but I'm hopeful that I will come back around by mid-June. My dad measured my hair. It's 4/10" long now. Sometimes when I think I'm not doing so well, I look at my very short hair and see it as a time line, like well, I am only 4/10 of an inch away from the experience of cancer-- not very far yet at all... so cutting myself all kinds of slack is what's needed right now. Did I walk through it today? Yes? Then today was a success. My next surgery is April 20. I thought when it was over, this experience would be over, but now I'm realizing that this experience doesn't seem to end. Or maybe for some it does. Maybe it has to or we go crazy. I mean, the truth is that every single one of us is going to die but most people don't spend their days thinking about it, so somehow we've got to redirect our attention before we ruin our beautiful second-chance lives. Anyway, thank you, sister spirits, for your understanding.

kayakskibike, that was so nice to read. Thank you! Very coherent and so true

I am only about a month into this maybe two. I refuse to look at the dates on the calendar. I think it is in some way of making it not real. i am scheduled for a BMX on May 30th. I have stage 2a IDC left side. I do not want radiation and so made the choice of cutting both off so they were even. I feel everything is surreal. Tomorrow we finalize my adoption of a 16 year old boy who moved with my husband and I a year and half ago when the people who were raising him died due to lack of complying with doctor's orders. It all seem so unfair to him to now have a new mom that is going to be sick so I refuse to think about it. But it is all I can think about. AS someone said on another post. CANCER SUCKS!!