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Mother’s Day

Sharing my thoughts about Mother’s Day on Father’s Day. I am doing my final revisions a month later, with a toddler sleeping in my lap, at midnight. That is motherhood, folks.

This post has been challenging to write. I have come back to it several times over the last month and it keeps expanding and evolving. I wanted to make it more positive, but Motherhood is complicated and difficult, and so is life in the outskirts of Cancerland. I am struggling with my role as a mother lately. It is hard to admit, but I don’t really like it and I am not doing the best job. I seem to have lost some of my maternal instincts despite currently raising a 1.5 year old and a 3.5 year old. I will take credit for all the care I have put forth as a mother, nonetheless. IMG_0237I have committed more time and energy to them in a few years than anyone or anything else in my lifetime. But cancer has transformed my love for my daughters to something fierce and distant. I don’t have time, patience, and energy for smothering sweet and gentle anymore. It is an often thankless 24/7 commitment and I do not do it alone. The designated day to honor us mothers is a spotlight that feels both too bright and not bright enough. We are doing the basic and ordinary, but we are raising up the next generation of human beings! Bear with me through this drawn-out entry.

I am both more aware of, and less concerned with holidays since cancer. They help me measure time and my experience, reflect and remember what I have been through, and be grateful that I am still here. I care less and less about what I am supposed to do on these days, and more and more about what I want to do. What is it really about for me and my family? Gifts are nice, but I don’t need flowers or candy to feel loved on a prescribed day.  I prefer an opportunity to spend time with the people I love or have an experience that I enjoy. Considering my life revolves around these 2 small people, I have to prioritize myself more in order to be a better mother to them. I have to take care of myself in order to take care of them. I now often choose time and space, without pressure or expectation, to decide what feels right in the moment. Sometimes that is rallying for a family adventure or a meal out on the town, and other times it is being alone to tackle everyday stuff without distractions.

I want to focus on the positive, to celebrate every occasion possible, because life feels more precious and fleeting in Cancerland. After being at my absolute low after surgery a year ago, I appreciate how far I have come, yet I am still not where I want to be. I am caring for my children largely on my own these days. I am living a seemingly “normal” life, but my body and mind are damaged. And I don’t like the obligation to be grateful for every little thing, every minute and hour and day. Sometimes I want to complain and yell and hide. I want to blow it all off. Sometimes I want to be lighter. I want to skim along the surface and not feel jaded or anxious or limited. Cancer is heavy, especially in the company of other younger women diagnosed with babies/young children. Last month cancer killed a few moms in my online support group. One had been struggling with aggressive metastatic disease from the beginning. Another with intense pain through a recurrence for (only) a few months, despite new lines of treatment. And the other was gone in half that time, before they could even start to address her recurrence. To witness Mothers suffering through debilitating treatment and then still being taken from their children before they can walk or talk is a simultaneous punch to the gut and heart.

So, for Mother’s Day this year I did a lot of reflecting. I felt grateful to still be here with my family, but also a bit guilty. Like why do I deserve to still be living and they don’t?!? Like I am doing a shitty job in this role and they probably appreciated it all more than I do. I thought of these mothers torn from their young children, still in diapers. Of how their families must be feeling and the logistics of them carrying on. Of what it would be like for my children and husband. Who would step into my role? Would my girls remember me? These are not pleasant thoughts, but also necessary. That is the reality I live in now. Plenty of serious things to think about that you don’t really want to think about. I am well aware that people die all the time, especially in Cancerland, but that doesn’t make it easier. That doesn’t make it fair. Would it feel better if they were in their 40’s, 50’s, 60’s? Probably not. But it seems less cruel to have that much more time. My father died from cancer when he was 44, so with his day nearly upon us, I wonder if I will make it 7 more years to that age? On one hand that sounds great, and on the other, a super lame deal. What would it take to negotiate 20 more years, minimum?

My struggles with this disease have weighed me down, and so they have weighed down my mothering. To the point that I don’t feel like celebrating at all. My goal is neutral and realistic, to minimize the damage. The best I can do much of the time is live in the distance I have put between myself and my children. In the midst of major treatment, it was a physical limitation, but since diagnosis my emotional distance has continually increased. I have become a frustrated, impatient and angry person where I used to be adventurous and easy-going. The motherhood part is where my guilt creeps in. I love my kids, and I want them to feel safe, supported, and cared for, but my girls drive me crazy. I often find myself stuck in a loop of “I can’t handle it!” and “Give me some space!” Like I can’t wait for their father to come home. Rotating between saying NO all the time, or Yes, just eat ALL the cookies and watch ALL the Octonauts. I hear myself yelling and I don’t like it, but there I am.

It is easy to get stuck in the muck. To hold onto the negative, the shortcomings. I know I am being hard on myself, but I also want to do better. I love my kids and they have a comfortable life, but I want to be remembered as loving and kind, not grumpy and impatient. I apologize to them when I make a mistake and explain my frustrations, I just wish there was less of that. We spend plenty of time playing and cuddling, yet I want to increase our positive interactions. I want to do more and be more for them, even if it will make it harder when I’m gone.

Last year, for my first Mother’s Day with two children, I was most definitely stoned. A ghost of a parent. While I was feeling better than I had anticipated, a couple of weeks out from my mastectomy, it was not easy or fun or pretty. I was certainly not responsible for anyone other than myself, and not even that. It was a haze of lingering discomfort like I had never experienced before, except maybe childbirth, and then only vaguely. I had only used pot a handful of times previously (it is legal in my state, FYI), but recovery from major surgery seemed the right moment to really give it a try. I wanted to minimize the use of prescription painkillers because, side effects. I didn’t want to take drugs with my drugs just so I could eat or use the toilet. But then, medicinal marijuana can have its own drawbacks. Like, I passed out through my third Mother’s Day. I remember laying in bed with my girls in the morning and lots of giggling. Then feeling self-conscious about what I was saying and tingly all over. That’s it, done, whole day gone. 

For my fourth Mother’s Day this year, I was glad to sleep in and wake up to an empty house. I have spent the better part of the year between the two holidays recovering my motherhood. As I completed treatment and recovered physically, it was a serious effort to make my way back to being the primary parent again. This Mother’s Day was my first feeling like I could own my part as a full-time mother to my two young kids, and with that, acknowledge I needed a break. There was no one I needed to care for and vice versa. I enjoyed doing chores and working on my ceramics in peace. Finishing a cup of coffee while it was still warm. Preparing some food for myself first, and eating sitting down. It was lovely to relax into a little piece of normal adult life that is often lost in motherhood and now even more cherished in Cancerland. And while I appreciate breakfast in bed or a gift certificate, what I need most these days is time and space to remember who I am. The whole me. The person I was for 33 years before I became a mother, and the 35 years I lived without cancer. To find balance between my life before and after both.

Motherhood is amazing and fulfilling, but it is so hard sometimes. Even harder than cancer. The physical and emotional work of parenting is consuming under the best of circumstances, then Cancerland makes it much more intense. With “No Evidence of Disease” I have a cushion, but it could be pulled out from under me at any time. While I am dramatically more capable than I was a year ago, I still don’t have full range of motion in my left arm or shoulder. I have persistent swelling under my left armpit that is often uncomfortable. My rib cage on that side is tender and sore. I am menopausal and take medication daily that make me stiff and moody. Recurrence is a real and regular worry. I worry about being sick, about having to be back in treatment, about dying, and more so of the toll that will take on my family, my children. Then again, Cancerland has enabled me to make and take time for myself, and to let go of a lot. I am going out with friends and running errands alone. I am not worrying so much about the small stuff, like apologizing for dropping my kid off late to preschool or letting her eat cookies for breakfast. I am not ashamed to have unwashed hair, the same outfit for days or that I wanted to spend Mother’s Day away from my kids. 

No matter the daily challenges of life with kids after cancer, it goes on. I continue trying to celebrate everyday in some way. Sending love, patience, gratitude and strength to all the mothers out there feeling inadequate or struggling while doing the best they can. You are not alone.

 

 

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One year as a Uniboober

When you have breast cancer it is hard not to think about breasts all the time. It is hard not to become both highly sensitized and de-sensitized to them. They get all this attention, meanwhile they are trying to kill you. It is a common topic of discussion in my support groups and I think it warrants more discussion in the wider world. Breasts, boobs, tatas, tits, the ladies-whatever you call them, they are a special feature that all of us female human mammals develop and carry around for all of our adult lives. Some women love and embrace them, some feel self-conscious about them. Some feel empowered by them, some feel limited by them. My feelings about my breasts have been all over the place. Cancer threw me from a very good relationship to a terrible one, and now I am settled into neutral territory.

My relationship with my boobs shifted first years ago when I became a mother. Once they settled into their role as milk dispensers, I became much less socially conscious about them. They were finally doing their job, being all useful feeding my baby and that was amazing. They were definitely more of an annoyance than anything else during my young adult life, trying to keep them comfortably wrangled during a variety of sporting activities. And now, after having a baby and nursing for 18 months, plus all my cancer treatment, my breast(s) have been examined and fondled so much that modesty is second place to practicality, comfort and ease. Meaning I don’t really care if you see my breast/nipple and mostly I can’t be bothered to wear a bra or a prosthetic because it is annoying. Honestly, it is one more thing I have to do, when I already struggle to change my clothes daily. So I have been dressing as if I don’t have breasts for a year now and it has been refreshing. But then, I do still have one.

I have been thinking a lot about my first year as a uni-boober; the ups and downs of my lonely udder. I am lopsided, and it doesn’t normally bother me, yet it is still kind of strange. A part of me, that defined me as a woman and mother, was amputated. And every day when I get dressed or change my clothes, every time I take a shower or hold one of my kids, I am reminded of cancer and that it took a part of me. Then I have moments where I wish I was just flat. I am paranoid when I do my self-exams that any little anything out of the ordinary is more disease, even though what I really have to worry about is the cancer spreading to other parts of my body. Metastatic or stage 4 cancer, likely to go to my bones and/or organs is what will kill me. Still, I have a negative association of breast=cancer, so the one I have left is often shunned, rather than appreciated. But my doctor recommended a unilateral, rather than bilateral mastectomy, so that is what I did. It was an easier surgery, a quicker recovery, and I still had a good side to hold and care for my infant. And with my IBC diagnosis, reconstruction is delayed at least one year, which I feel confident that even then, I don’t want to do it. No additional unnecessary surgery for me. As much as I have adjusted to being a medical patient, one major surgery is more than I care to endure.  I am open to changing my mind once I pass the 5 year milestone with No Evidence of Disease (my less promising version of remission), whether that means removing the other breast or having reconstruction, but for now I am rocking it with righty. I admit that I feel like an outlier, though, as I don’t fit in with the flatties or the foobies.

My toddler at least knows what a breast looks like, and she has become interested in my remaining nipple lately. And her big sister recently asked where my other boob went. It is bittersweet, considering I breastfed my first daughter for 18 months and my second completely missed out on the experience. Even though we have been around other nursing moms during her infancy, my second child has never drank milk from a breast. She was born just after I started treatment and did benefit from donor breast milk for 6 months, but it is crazy to think her sister rarely drank a bottle and she lived off of them. After over a year she has just started pointing out, touching and name my nipple regularly, giggling as she does. I wonder if or how her development has been affected by it all. Sometimes I still get upset about not having the chance to bond through a breastfeeding relationship with her, even though I know it is taxing and not always easy. I admit I harbor some resentment towards moms who opt to not even try, because that choice was taken from me. While I had the positive and empowering experience of nursing her sister, I am glad that Daphne’s papa, and many others, could take on the responsibility of feeding her, with all that was going on during her infancy. I am glad to have one udder remaining, even if it will never function that way again, but what happened to the other one?

My 3 year old had never asked about my missing breast until recently. It had been 10 months since my mastectomy and it had never come up before. We were at a party and I was holding her while talking to a very pregnant friend. She reached down into the top of my shirt and put her hand on my flat side, posing the question without hesitation, as young children do. I didn’t know what to say initially, other than “I don’t know.” I then explained that my breast was sick and it could make the rest of my body sick, so the doctor had to take it away. She asked if it hurt, and I said yes, but it was all healed up and felt better (mostly). And that was the end of it. Except I kept thinking about it. Like literally, where did it go? Where do all the breasts go when they are cut off? I began to imagine giant trash cans full of body parts. Sorry, not sorry, that is the truth. And then the extreme scale of medical waste, in general, but also just for myself over the course of my treatment. All the disposable containers, wrappers, gloves, needles, gauze, tape, bandages, swabs, vials of medication, pill bottles, paper covering the exam tables and on and on. Needless to say, my mind goes down these kinds of rabbit holes regularly, partially because of who I am and then largely because Cancerland messes with your head.

Speaking of breasts and big ideas, I need mainstream media and popular culture to stop telling women what relationship they should have with their breasts. I respect that every woman’s body is her own and her breasts play a unique role in her life, from intimacy, sexuality and femininity, to their mammary transformation in motherhood. Some women prioritize modesty and privacy, while others like to flaunt them or just don’t care. I wish women didn’t feel pressured to do anything that doesn’t feel right to them. Wear a bra, don’t wear a bra. Nurse covered up, in private, or wherever, whenever and however. Have reconstruction or don’t. They are just breasts. They are just nipples. They are a special part of you but they are just a part of you. When raising awareness and supporting people with breast cancer, please help shift the dialogue and focus away from the breasts and onto the whole person. We don’t need to save the tatas or just get a new set of boobs, we need to save the people and cure the disease.

Even before cancer I didn’t like wearing a bra. My once large breast(s) and I found them progressively uncomfortable and ill-fitting throughout my adult life. Plus, they are often expensive, at least the few I did find to fit me well. Especially when pregnant, then nursing, a tank with a shelf bra worked much better for me (when I really needed containment and leakage control). By the time I had my second baby and started treatment at 35, I just stopped wearing them altogether, and wish I had done it sooner. In fact my whole wardrobe has shifted to prioritize what I feel comfortable in. Like pajamas are clothes and clothes are pajamas, people. I have prioritized my energy and resources on other things, like my children. Until last week, when I finally ordered myself 2 new special breast cancer bras. They are super soft and have pockets for padding/fake boobs. I tried them on. I tried stuffing the other side. It was frustrating and awkward and not at all balanced with my other side. I took the padding out. It felt just as strange having a bra on with just one breast and an empty space. I took it off.
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I haven’t worn it since. I haven’t given up completely, but it seems my udder prefers to just hang. Like all the other mammals.

Happy Birthday/Chemoversary to Me!

img_3948When you have cancer, it feels like you have to celebrate EVERY milestone. Last year, days before I turned 36, I took my 12th weekly ferry ride to the neighboring island hospital for my  final Taxol infusion. Before that we commuted to Seattle for 4 rounds of dose-dense A/C chemo every few weeks. Five months devoted to injecting my body with poison, done. The first stage of tri-modal treatment, done. The first few months of life with 2 kids, done! The first half of my thrities, done!

One year ago, at the last minute, I invited a few friends and family along to my last chemo, because, well, why not! It had become normal part of life for me, and it felt important to share some of that experience and acknowledge the milestone in some way. After the three hour infusion process, the nurses presented me with a few tokens and my mom, husband, 2 daughters, a couple friends and their babies all rushed off to catch the ferry. We missed it. We pulled up to the landing just as the boat was pulling away, so the celebration was extended for a few more hours. We did some nap time driving around San Juan island until the next boat. Such is life in the islands, life with small children, and in treatment. Lots of getting there and back. So much hurry up and wait. Endless amounts of getting through it.

And then we went on a birthday vacation to Utah. It felt necessary to celebrate another year of life in an extra special way, with a trip to a mountain ranch where a good friend was working. It was a rendezvous with a handful of my sisters and a visit to Zion National Park, in a totally different landscape and climate than where we lived. A true getaway. I don’t like airports and it was an ordeal, but the flight to Las Vegas was just a couple hours and that seemed doable with 2 little people and a suitcase full of frozen breastmilk (and some dry ice). Baby Daphne was 4 months old and already traveling! It was hot and sunny and a welcome distraction from the thick of cancer treatment. We took walks, visited with the animals, had a dinner out. I made it to another birthday, fatigued and damaged from chemo, but not as sick as I could’ve been.

Maybe it was the Turkey Tail supplement I was taking, my age, or my typically strong immune system that kept me from getting totally knocked down. Maybe it was the physical support and the ample time to rest, or the distraction of my children. It was probably all of these things. If only it had worked.

Sometimes I think I would’ve rather been really sick for 5 months if that meant the drugs would’ve done their job and killed off my cancer. Sometimes I regret not stopping or switching chemo sooner when the mass in my breast did not shrink, but instead seemed to grow. But hindsight is always 20/20 and hopefully it did something to kill off the cancer that was circulating in my system. There is just no way to really know, no one right or wrong answer with this cancer business. Even oncologists are limited in their understanding and experience, and they can vary significantly in their (recommended) treatment. I discovered this through my personal experience after I transferred care in the midst of it and even more so after joining online support groups (unfortunately after chemo) and learning about the experience of many others. Even with a similar diagnosis, some women were prescribed one drug instead of another, and/or treatment in a different order. With a rare and aggressive diagnosis, getting to know a new oncologist, especially at a small rural hospital (they only attend once a week), is a process and a challenge. My second doctor had obviously not examined me before I started treatment and had not been able to see how my breast and symptoms had changed. I only saw her a few times and felt like she was just getting familiar with my case by the time I finished chemo. And surgery was definitely happening back in Seattle anyway.

There are times I regret prioritizing convenience over consistency and level of care. But the value of reducing our 4 hour commute to 1 felt worth it at the time, mostly because of my newborn and toddler. I wish, at least, I had reached out for the support of others in my situation sooner (during chemo), because that might have encouraged me to speak up or ask more/the right questions. Maybe it would’ve changed my treatment plan or outcomes. Maybe not. It was all just so overwhelming, in every way, at the time. I was just trying to survive.

It is kind of a bummer that my birthday is now tied to my chemoversary. I am still not sure what I will end up doing to celebrate this year, but I am passionate, more than ever, about celebrating at least as many days as you are old. So I think my solo trip to California and the YSC Summit a couple weeks ago counts as a beginning to my month-long birthday party. And we just planned a trip back east to see family in Buffalo in another month, so that can be the drawn-out end. Meanwhile, spring is upon us and the daylight and new growth is inspiring. Maybe it is time to get back in the garden and on an exercise routine? Maybe weekly massages? I just went to my first ceramics class since before I had kids, so I will say that is part of my self-celebration too. Here’s to my 37th trip around the sun and all of you that have been part of my journey over the last year.

While completing the first phase of treatment one year ago feels like an accomplishment, I did end up taking a another chemo orally during radiation. Like the rest of cancer treatment, for me, it wasn’t a fight or a battle, but something I unhappily endured. I hope I will live long enough that these two milestones can one day be separated in my mind again. I hope my luck will carry me past the enduring impacts of chemo. Regardless, I will continue to celebrate as many milestones as I can, in whatever way I can, with gratitude that I can. I am here. And I own a lot more hats now.

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Young Survivor’s Summit

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A loaded Meyer lemon tree in my sister’s yard in Oakland. These lemons are more fragrant and sweet than their common cousins. So good! So beautiful!
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Good times with my California sisters. It was nice to be able to spend some quality time without the kid tornado.

I have been debating what to share about my experience at the YSC Summit in Oakland, CA since I returned home a week ago. I have responded to everyone’s questions with “I am still processing my experience.” Overall, it was a pleasant getaway for me, being on my own in the abnormally warm and sunny Bay area, connecting with the breast cancer community and spending time with my sisters. I have listed some of my insights from the conference below.

1. It was empowering being in the company of so many other women who understand, without saying anything, at least some of what I have been through. It was informative and engaging, listening to actual live speakers about topics and issues relevant to the breast cancer experience. It was also overwhelming and a bit sad. Being in a giant conference room filled with hundreds of women brought together by disease and struggle. Trying to connect in limited moments over heavy and complicated cancer challenges. Trying to absorb more information about treatment and cause.

2. Every room should have a window. Every session should have an ice-breaker and more question and answer time. I would’ve appreciated more time between speakers to rest and chat and get some fresh air and sunshine. It didn’t help that it was so nice outside and the whole thing took place in rooms that were varying sizes of dark cave.

3. Breast cancer is an industry of sorts. There were loads of non-profits and companies with tables sharing products and programs and information, from fake nipples to support programs, to the latest in genetic testing. It was a strange element that I didn’t have mental space to really participate in. The networking breaks built in to peruse it all were better spent for me sitting outside or chatting with a new friend.

4. Of the 650ish people attending, I was happy to connect with a handful of women, some that I had met virtually in an online support group, and a couple strangers that I happened to cross paths with. It sort of felt like being in college, the first days of a new semester, filled with both anxiety and excitement. There just wasn’t enough time and energy to navigate it all in a couple days. Just as I felt like I was settling into it, it was over.

5. Factoring in my long journey to get there, being away from my children/on vacation, and also spending time with my sisters in the area, it was a strange but worthwhile experience. Maybe better in some ways if I had stayed at the hotel and went to more of the events? Maybe better if I had just sat out some of the sessions? I don’t know if I will go again, but I am grateful to have participated.

6. Some of the speakers/presentations I enjoyed: Dr. Susan Love, Jeanne Rizzo RN, Laura Holmes Haddad (author and IBCer), Fear of Recurrence, Creative Finances, Lymphedema and Oncology Massage, Nutrition and Exercise.

A spontaneous porch haircut and a personal “Know your Lemons” photo shoot, inspired by my sister, awkward mullet chemo regrow, and the heat.

 

Time Out

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Since Cancer and having a second child, I have taken lots of time outs. Way more than my 3 year old, in fact. Well, we call it “taking space,” and it is more for her benefit than mine. You see, patience is very lacking in my parenting and my life these days. So I encourage her to take space (mostly from me, but sometimes from her sister), to prevent my overly dramatic reaction to her normal preschool antics. More often, I put myself in time out, hiding in the bathroom with the door locked and the fan on, to find some peace or to try and hold onto it. More often than not I am trying to keep my emotions to myself. Trying to stay cold. It has been a coping mechanism from the beginning. Surprisingly, in the year and a half since I was diagnosed, my tears have not come easily or often. I am a very emotional person in general, but under these circumstances, what used to be sadness has been replaced with frustration and anger. It is not my preference or even my choice, especially for my children’s sake, but it is just how I am getting through it. I could blame the side effects of all the medications and procedures, my hormones, or lack thereof. I could blame the volatile combination of motherhood and cancer. Or two needy little people and a needy parent. Maybe because the sadness is more overwhelming and harder to recover from. Maybe because my tears bring tears from my children, and it just snowballs. But every once in a while, sparked by something innocent, the tears start flowing behind a closed door. In between sobs and snot and feeling sorry for myself, I find some relief. The release is calming but disconcerting. Whether frustration or tears, I often feel like I have regressed to the emotional maturity of a child. Like I am holding it together as well as my toddler at the end of a napless day.

I should be able to cry about this more, right? Maybe I would’ve moved on by now, although I think the reality is that I never will. Tears seems warranted, justified, even necessary through all this. For me, it feels strange when I do cry because it makes me realize how little I have. Maybe my extensive use of time outs has served me well enough. I have the luxury of helping hands that enable me to just walk away and close a door. To be with my body and my thoughts. And then, I consider my regular bouts of sleepless nights to be really long episodes of taking space. There is the physical aspect of insomnia (a side-effect of many parts of treatment) and then the mental need to have less waking hours that overlap with the majority of people. It means less interactions, responsibilities and energy expended with the rest of the regular world. These marathon time outs have decreased in frequency, but still seem to remain necessary here and there as I process and reset from new phases of treatment. The dark and quiet of night is my time to write and participate in my online support groups. It is when I can get lost in a television show and get my mind to let go for a while. It is also when I should be sleeping.

It is all still so heavy. I am still trying to get out from underneath it. I am trying to sort it out. And speaking of that, I spent my Saturday night organizing all my medical paperwork. Punching holes, sorting into categories and swapping out for a much bigger binder.  My recent life is summed up in hundreds of pages of clinical notes, appointment and treatment schedules, lab work, diagnostic and pathology reports, and plenty of reference materials. My older daughter excitedly wrote notes on piles of discarded paper, incorporating this into her doctor game, which involves lots of check ups, shots and medicine on the regular. This project refreshed my memory and understanding of all that has happened to me in Cancerland. As I flipped through my cancer book with my husband, there was some light-hearted commentary and even some chuckles. It is easier to do this now that I am on the other side of the poison, cut and burn (I hope). Now that it feels like there is space to step back and breathe. All these pages represent time, experiences and connections lost. Normal life I wasn’t living and isolation gained. It still seems like it happened to someone else, written in a foreign language. No matter how many times I read my own name on the pages, this was not my doing, but something I endured. This is the story of an extra long time out, yet just a snapshot in the big picture of my life. More and more I am realizing what I need most is more time IN. More time taking walks, cooking and sharing meals, having adventures with my girls, playing games, crafting, going out with friends, or maybe even my husband.

Here’s to the truth of this journey. Here’s to sharing and supporting each other through our time outs, or whatever gets you through the hard stuff. Here’s to more smiles and sleep, and most importantly to improving and increasing time IN.

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Spending some quality time at Moran State Park, Cascade Lake playground.

Club Complicated

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Extra complicated: A big family trip/rendezvous in Utah, between chemo and surgery, with an infant and donated breastmilk. This was a peaceful moment, on a sunset hike in Zion NP.

No matter who you are, or the state of your life before cancer, this disease makes things complicated. Of course this is relative, and the experience of treatment can be less involved for some and much harder to tolerate for others, but the basic implications of a diagnosis are that you have been initiated into an exclusive club. There are lots of spoken and unspoken rules, unpleasant requirements, frequent meetings and steep dues, all revolving around survival. And while you don’t have anyone you need to impress, by nature of your initiation, you want your oncologist to like you, to know you, to be rooting for you, whatever your prognosis. It is tricky to sort through it all, to acclimate and to balance your membership with the rest of your life.

While it is not competitive and each person’s experience is unique and valid, my specific chapter of the club is an especially selective and demanding one. Think lots of hazing and few promising benefits. Inflammatory Breast Cancer is rare and aggressive, and especially because I had residual disease after chemo, my prognosis was/is not great. But I continue to choose not to focus on that. I choose instead to remain as easy going as possible and focus on life, the day-to-day, with as-needed adjustments for all that the club requires. Treatment and recovery is ongoing, even over a year after diagnosis and 3 different sets of chemo, mastectomy and radiation. It has tapered off to a daily pill to prevent recurrence, some lymphedema and inconsistent physical therapy. I am slowly reclaiming the simple life I have worked towards for a good part of my adulthood.

Settling on a small island and having a child were the biggest jumps to becoming truly low maintenance, but it started with moving around, traveling, and finding joy in spending my time and money on experiences instead of stuff.  I reached a point where I was prioritizing quality over quantity, across the board. I would rather be eating, sleeping, or adventuring than doing my hair or make up. Some people can pull off both, but I am not that organized or successful at managing my time. While life is slow and quiet on Orcas by nature, staying home with my baby and losing my income made our budget very tight and our life that much simpler. Our daughter became the focus of our lives and our big outings were a run to the grocery store or an afternoon stroll to the beach. She didn’t care if I was in pajamas or hadn’t washed my hair, and neither did I. And then I got pregnant again.

Even though routine prenatal care put me and my baby in a dull sort of spotlight, it was nothing that could even begin to compare to the high beam of cancer. My diagnosis shifted the attention to me. Lots and lots of attention and care. Well, me and my cancer. All of a sudden we were caught up in a whirlwind of medical jargon and life or death decisions. All of a sudden I needed so much, and being pregnant made it that much more involved. A perinatologist (OB specialist) teamed up with my midwife and my oncologist, nurse coordinator and social worker were all in the club. Although the attention was mostly aimed at my physical body and from a very medical perspective, the emotional impact couldn’t be ignored. And while I still haven’t seen a therapist, there have been all sorts of supports in place as I maneuver through treatment and the fall out. This meant asking for and accepting all sorts of help, physical, edible, and financial. People to help with the kids, the house, the meals, and the regular overnight stays away from home. This meant I could justify taking time to myself and purchases to make life easier, like lots of new pillows, comfy clothes and whatever food seemed appealing at the time. A smart phone and even a new computer made their way into my possession, because, well, life is short and I could use them now. I wish it didn’t take a health crisis to force me to make some decisions and do what I want, the complications of cancer made this relatively easy.

After all the time I spent settling into second place behind my first child, this new club felt selfish.  It turns out my standards had become fairly low, as my meals were usually eaten standing up or after a child, my clothes worn for days on end, and my showers even less frequent. I can still remember a time when I spent tens of minutes on my appearance on a daily basis, but that feels like a lifetime ago. Shaving and make-up have long been a thing of the past, partly because I would rather sleep and partly because I just got more comfortable in my own skin, just as it was. I actually found over time that the less products I used, the better off my skin was. Deodorant included! Call me a stinky hippy, but I definitely have clearer skin and smell less now than when I was showering all the time and using all sorts of stuff on my body. Return from the tangent.

Part of me wishes I had kept a tally of every appointment, every exam, every blood draw, every blood pressure and weight check. Every minute or hour spent traveling and waiting and looking for parking and riding in elevators. Every conversation with a nurse and doctor and a nurse again. Every question and debate and set of tears shed over every major treatment decision. Every time I had an infusion, in pre-op, surgery and recovery, and on the radiation table. Every time I changed into an awkward oversized gown, again and again, and waited in a cold room behind a curtain. Every phone call from a nurse or a scheduler trying to coordinate it all, considering the ferry schedule and nap times. And it all had to line up or one thing relied on another. So many moving parts and so much time and energy spent focused on me, or around me. My cancer is demanding.

How am I doing? Alright. How is it going? Shitty, but fine. Do I need anything? Everything and nothing. Do I have any questions? So many, but none I can articulate in this moment. It is all a blur, I tell you. And a rollercoaster. The stakes are so high and the feelings so intense as you muddle through the ups and downs of club life and normal life and that big gray area where they overlap. I have been mostly living in the gray. And at a certain point early on, I just needed space, to zone out and be distracted, to try not to talk or think about myself. Seriously, my cancer is high maintenance, but I am not.

At least I can thank my cancer for showing me the love, care and generosity of others, and that self care is a necessity. Self-care is hard when you are already receiving regular medical care, but even more important. Sometimes that meant getting a massage or eating a bag of gummy bears. Sometimes that meant days on end in bed, binge watching some Netflix. Often times that meant some fresh air and a walk. Sometimes it was in the company of my kids, but more often it was alone time, and not just a few minutes behind the bathroom door. I needed space to just be and breathe, without any attention. Living a quiet life in the country made this easier, but having a new baby and traveling a long distance for treatment made it harder. For a while I transferred care closer to home, and it was certainly nicer and easier, but my treatment suffered without consistency. We are all better served by doctors we feel good about, doctors who feel like our advocates, who we can talk to, and who know us and our histories well. Sometimes you can’t find that close by. Silly me, thinking I could cut corners or have it all. Every oncologist and cancer center is their own, just as my case is unique and yes, complicated.

Chemo barely touched it. A mastectomy, just enough to get out what we know about. Radiation, well I had to get zapped but also let’s throw in another round of chemo with that because it might work better. Hormone therapy? Why yes, let’s even double up the doses because my body won’t cooperate. Scratch that, let’s do another surgery, get those ovaries and tubes out. Menopause, guaranteed. And still, if you want a solid chance that it won’t come back, its 5 years of an Aromatase Inhibitor drug. I am gonna take a pill for over 1500 days because I need to learn some discipline. My cancer is persistent and uncompromising and I realize it could be much worse, all of it.

Somehow I feel like I have held onto simple, despite the demands of the club. Maybe because being the patient is more straightforward than being the patient’s family and friends. Maybe because all these things have happened to me and sometimes that is easier than watching it happen to someone you love. Maybe because I was already lazy and that has been enhanced with fatigue. Maybe because of all the help, I have managed to remain sane and mostly calm through it all. I have the luxury of just being who I am from moment to moment and day to day because others have picked up my slack and my kids are only just now beginning to judge me. Maybe because I have gotten better at letting go, being honest and not apologizing for who I am or what I am going through. It is often a mess. I am often a mess. But this club is only part of my life and I am busy reclaiming the dullness of the rest. To all the patients and survivors looking like nothing is going on, all put together, documents in order, club lingo down, attending to their kids and jobs with patience and kindness, doing housework (HA!), exercising (HaHa)-I am in awe of you. You are amazing  and I am still learning.

“Ooph”

I had a Bilateral Salpingo Oophorectomy on 1/9/17. Some ladies have this surgery on a different timeframe, some not at all, depending on their specific diagnosis and treatment plan. I decided to do it now because my body was not responding to the hormone suppressing Lupron shots. After 4 months and increased dosage, I was still not in menopause. So, after trying to induce it medically, we resorted to inducing it surgically, which was necessary to start the next phase of treatment. Having my ovaries and tubes removed wasn’t that complicated, but I realize that has a lot to do with how much I have been through already. Relatively speaking, it was a minor, outpatient, laparoscopic surgery with a much easier recovery than the last one. Actually, the experience falls somewhere between mastectomy and port placement/removal.

It took a bit more than 2 hours for the procedure itself, but they put me under and the whole process was much longer. I checked in around 10 a.m., surgery at noon, in post-op recovery until 4 p.m. There were 3 small incisions and I was woozy and flushed from the anesthesia. My body was pumped full of air so I had lots of bloating and painful gas in my torso and was sore for a week or so. Sleep was tricky during this time, mostly because I couldn’t get comfortable. I used ibuprofen for the first few days, but otherwise was fine without meds. The steri strips stayed on for almost 2 weeks before the residue started to bother me and I worked them off with a little oil and witch hazel.

Photos: The day after/a few days after surgery and one week post-op

 

I couldn’t wear the baby carrier (or normal pants) for a couple of weeks because the hip strap went right over my wounds, but I wasn’t supposed to be carrying over 10 pounds for that long anyway. Ha! I only made it 5 days, even with my mom and husband home to help. How do you deny an upset toddler with arms outstretched? I tried to redirect her, but was not always successful. Sometimes I needed the endorphins from her too. I am lucky my side effects were minimal. No dramatic onset of hot flashes or night sweats, as I was anticipating.

I have since followed up with a NP at the surgeon’s office (which included a brief pelvic exam), and my oncologist on 1/26. Everything looks good, except I already have osteopenia in my hips and this will get worse now that I am menopausal. I started my Aromatase Inhibitor drug a few days ago, which I will take for 5 years to help prevent recurrence. I am taking a calcium citrate and vitamin D supplement along with it, as well as melatonin to help me sleep (the surgery threw me off any kind of regular schedule I had).  This is the beginning of tapering off regular visits to Seattle and my oncologist. We have been going every month, on average, for over a year and my next appointment is not for 3 months!!! It is exciting and also a bit anxiety inducing. I always seem to have strange pains the day after I see my doctor. I am regularly reminded they are just a phone call away.