I'm pissed off. Why does my family have to go through this? They're not as strong as I am. And yet, they have the hardest part. They have to watch as I go through treatments and get run down and feel sick. They have to go on without me if the miracle of healing doesn't come. They're not equipped for this. I've said it before and I mean it when I say that I would rather be on this side of cancer than on their side. It makes me feel selfish to say it. I do know my side isn't easy, but I can't imagine watching one of them go through what I am. I am strong. I've had practice in being strong. God has prepared me for this.
So, how do we prepare my family? Communication is not a strong suit here in our household, especially with the men. Mama is the conduit, the go-between, the glue that keeps it together. The enabler, unfortunately, as well - I'm working on that. As I look back over the years, there are things I could have done differently/better in my marriage and as a mom. But, I know I did the best I could with the knowledge and experience I had. Nineteen is awfully young to be a wife and 21 is awfully young to be a mama. I wouldn't change those decisions for anything. It was right for me. But, I was naïve. I would like to think I've learned from my mistakes and have begun to apply those learnings. I have no regrets; living with regret is futile. I'm just rambling here, trying to get down in writing the way I'm feeling this morning. Pray for my family. Pray that we are able to communicate about the hard things and also about the mundane, everyday things. That we are able to show our unconditional love in ways that are felt and understood. That we don't hide our feelings. That we are able to kick and scream and cry and hug and kiss and love. That we are each able to take responsibility for our role in this family and in the journey that we're on. Thank you, friends.
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In the quiet, I am still
In the quiet, I listen In the quiet, I pray In the quiet, I listen In the quiet, I plan In the quiet, I listen In the quiet, I read In the quiet, I listen In the quiet, I write In the quiet, I listen In the quiet, I give thanks In the quiet, listen In the quiet, I weep In the quiet, I listen In the quiet, I ask for miracles In the quiet, I listen In the quiet, He speaks In the quiet, I hear 'Rest in Me' In the quiet, I hear 'I am in control' In the quiet, I hear 'It will be ok' In the quiet, I hear 'I will take care of them' In the quiet, I find peace In the quiet, I surrender In the quiet, I experience miracles Diets just don't work. For those of you who don't know, I'm a Registered Dietitian. I have a Master of Science in Nutrition & Dietetics. I did 5 years of undergrad and 2 years of grad school, with a Dietetic Internship and I have recently learned that diets don't work. I was a hard sell.
I grew up eating such good food. My mom and my grandmas and all my aunts were and are wonderful cooks. We had family dinners on the table every night of the week - a protein, starch, veg, salad, dessert. It was always delicious (except the rare times we had liver). I never gave it much thought. I knew we were different than other families I saw who would have instant, boxed dinners or even have bags of fast food delivered by a parent to an upstairs bedroom. But I never realized how lucky I was to not only have the deliciousness of it all, but also to have those traditions instilled in me. I also never really gave much thought to nutrition or to my weight I naturally maintained a 'normal/acceptable' weight. Sure I heard comments others made about fat people and heard comments made to me when I ate out of the ice cream carton after school, "you won't always be able to do that". I remember rolling my eyes and thinking, 'whatever'. As I think back on it, I think that the first time I ever really felt as though I needed to monitor my weight was after my first child was born. It was the first time I remember being dissatisfied with how my body looked. When that sweet boy was just 5 months old, this mama was preggers again. I vividly remember one experience during that pregnancy. I was due in January and this happened at a family Christmas gathering. I was standing beside another pregnant woman, who was due at the same time I was. A man who I had never met before was at this family gathering. He looked at the two of us pregnant women, standing side-by-side and said, "Are you having twins?" I just looked at him and said, "Who are you talking to?" He said, "You. The big one." Yes, he was an ass. That was over 27 years ago. Why did it hurt so much? I was bigger. So what? I'm still trying to deal with the 'so what'. So, I gave birth to my precious baby girl and then I started trying to figure out how to lose the weight I'd put on in back-to-back pregnancies. This was in the early 90's and the low-fat craze was huge. I remember making a list of foods that I ate regularly and how many fat grams they contained. I set a limit of some sort and counted fat grams all day long. It worked, kind of, at first. Now mind you, I had never gone on a diet before, so seeing my body respond was quite something. I bought books about diet and nutrition and was just absolutely fascinated by it all. I soon realized that this was something I wanted to make a career. I had gotten married at 19, had two babes by the time I was 23 and was looking for some sort of fulfillment in my life as I faced the thought of my kids both being in school soon. So, in the fall of 1997, mama started school too. I took one nutrition class that first semester and I was hooked. I absolutely loved it. I continued to enjoy learning about nutrition over the next 7 years it took to get through the whole program. The anatomy and physiology of the body is truly miraculous and I was and am in awe of how it all works together. The last 2 years of the program was grad school, plus dietetic internship. The internship placed me in various rotations throughout northeast Ohio, helping me to gain experience in a variety of nutrition arenas. I worked in school foodservice, in a hotel, in a dialysis center, in a nursing home, in a private counseling practice, in a hospital clinical setting, and more. With the exception of outpatient counseling, I hated it. Here I was at the end of 7 years of school, thousands of dollars spent, time away from my family, and I had no idea what I was going to do. I won't go into the boring details, but I did a few jobs as they popped up and then I finally got the job I currently have, in the food manufacturing industry. It's the type of job that was never mentioned during my education and I didn't even realize it existed. Anyway, I have been blessed with this job. I use my education and knowledge in ways that I enjoy, with co-corkers that I love. So, that's some background. All throughout this time, I dieted on and off, losing weight and gaining, losing and gaining. I was never really fat, but I was unsatisfied. This world we live in tells us that our value is placed on what we look like. And I bought into it. But now, I call bullshit. Right here, right now. In 2012, I started another diet. I started slowly, with very realistic goals, no weight loss goal, but 'healthy eating' goals. That resulted in some weight loss, so I kicked it up. I restricted more and I also started running. The weight came off. People noticed. They thought I was something special. They complimented me and it gave me a high. I had never been a runner. I was fast, and had run sprints in school, but distance was hard. I had made a goal in 2012 to run a 5K, and I did it. I did several. That feeling of setting a goal that is difficult, but manageable was another high for me. I fell in love with running and with setting loftier and loftier goals: more 5Ks, 10Ks, half marathons and eventually even a full marathon. The weight stayed off for a year or so, but then for no known reason, it started creeping up. I was still eating the same way I had been, I was running regularly and also doing strength training regularly. Still the weight crept up. It was the first time I realized how little control we really have over our bodies. Today, I am fat. Yep, I said it. I'm a fatty. But, that does not define me at all. If someone were to call me fat to my face, it would hurt, but it really is just a description that says nothing about me as a person. I'm also 5'3", have size 7 feet, have short grey hair and red nail polish. There's no judgment in those things. Why do I feel judged because I'm fat? I was introduced to Intuitive Eating and Health at Every Size in 2016, initially through a podcast called Food Psych, hosted by Christy Harrison (shoutout to my friend Loreen who told me about it). I heard things that blew my mind and challenged what I felt to be truth. The first one I listened to was in April 2016 and the guest was Simi Botic (episode #59). Simi talked about why weight loss won't make you happy. I started listening to the podcast regularly, which led to other podcasts and books. I've listed some of my favorites below. They are eye-opening and if you're interested, take a listen or a read and decide for yourself what you think. Another great podcast to start with is the Food Psych episode interviewing Linda Bacon (episode #42). Just a heads-up - the podcasts listed and others you may find on this topic are created by passionate women with passionate opinions and they aren't afraid to let the profanity fly at times. I would like to make the disclaimer that I am not an expert in the area of Intuitive Eating or Heath at Every Size. And I don't want what I am saying to be misconstrued into thinking that health doesn't matter. Of course it does. But when the goal of a 'healthy' diet is weight loss, look deeper. I wish I had learned these lessons years ago, but I wasn't ready years ago. Today I know that I am more than what is visible to the eye. And so are you. In this world of judgment and condemnation, how about a little compassion? The only way this world will change is if we look inside ourselves and become the change we want to see (someone said that - just looked it up - Gandhi). So, if you find yourself looking at someone and judging them on their appearance, stop and ask yourself what you are telling yourself about them and why. Is it true? Do you have any way of knowing whether or not it's true? Or are you believing the lie? Compassion - I deserve it and so do you. Books Intuitive Eating, Evelyn Tribole and Elyse Resch Health at Every Size, Linda Bacon Body Positivity, Rebecca Scritchfield These podcasts are all hosted by Registered Dietitians Food Psych Podcast with Christy Harrison Body Kindness with Rebecca Scritchfield Love, Food with Julie Duffy Dillon The Mindful Dietitian with Fiona Sutherland The Bodylove Project Podcast with Jessi Haggerty A few weeks ago at chemo, my nurse asked about my tattoo. I think her words were, "What do you hope for?" Moments before, she had held my hand with tears in her eyes as I explained the reason I was back in treatment, so I was a bit emotional and her question caught me off guard. I didn't answer the way I would have liked to. So, I've been rehashing it in my mind ever since.
She first asked a general question about the tattoo and I told her that my sister had also had breast cancer and that after my treatment had been completed, we got matching tattoos. And that's when she asked the question: "What do you hope for?" and I blubbered, "Well, we hoped that it wouldn't come back." But that's not really it at all. Sure, we hoped and prayed that our cancer wouldn't return, but there is so much more than that. Several years ago, I found a poem by Emily Dickinson that said, in part: Hope is the thing with feathers That perches in the soul And sings the tune without the words And never stops at all. It spoke to me very deeply. I have faced a lot of heartache in my life. When I find quotes that speak to me, I save them; cling to them; call them my own. Hope. Never stops at all. The inspiration for the tattoo. I have hope in so many things. I have hope in my family's love for me. I have hope that all the prayers being said on our behalf are being heard. I have hope that God is in control. I have hope that when tough decisions need to be made about my health, we will face them and will know the next right thing to do. I have hope that we will get through the hard days. I have hope that there are a lot of good days still to come. I have hope that this life of mine is making a difference in the world. I have hope that God will continue to walk hand-in-hand with me on this journey, just as He has been every step of the way. I have hope that my children will find their purpose and joy in life. I have hope that my husband will love again. I have hope that I will see my Dad again. I have hope that my family and friends will use the pain that they experience through my illness and turn it to some sort of good; that the pain won't be wasted. Another definition of hope, this one from my Bible concordance, is this: Confident trust, with the expectation of fulfillment. Confident trust. With the expectation of fulfillment. Yes. All of these things I hope for are possible through my faith in a loving God, my source of all hope. I have hope in an everlasting life. This time on earth is just a blip in time. The best is yet to come. One of the books I'm currently reading (one of at least six) is Braving the Wilderness by Brené Brown. I'm not very far into it, but reading it this morning made me think of another one of her books, The Gifts of Imperfection, which I've read three times. I think that the ideas in it are simple, but not easy (hence reading and re-reading). The tagline for the book is Let Go of Who You Think You're Supposed to Be and Embrace Who You Are. That's a hard assignment, right there :) It is also what drew me to the book in the first place.
I went back and browsed through the book a bit just now and found this quote that Brown shares from E.E. Cummings: "To be nobody-but-yourself in a world which is doing its best, night and day, to make you everybody but yourself-means to fight the hardest battle which any human being can fight-and never stop fighting." Do you ever feel like you are just trying to be who everyone wants you to be and that you change based on the situation? You're one person at work, another at home, another with your friends and yet another with a different group of friends? Or do you ever just feel like you're not good enough - like you're trying to fit into what the world tells you to be or do? It's different for all of us, but some common things we hear from the world around us, most of which I've struggled with, are:
Sound familiar? Maybe it's different for you, but those are the things that popped into my mind. Brown believes that "our unexpressed ideas, opinions and contributions don't just go away. They are likely to fester and eat away at our worthiness." So, if we are listening to outside opinions on what we should think and do and as a result we stifle our authentic thoughts and desires, we are only hurting ourselves, which I think hurts those we love as well. She goes on to say that she believes that we should be born with a warning label, similar to those on cigarette packages: "Caution: if you trade your authenticity for safety, you may experience the following: anxiety, depression, eating disorders, addiction, rage, blame, resentment and inexplicable grief." I have no advice to give, other than to maybe give this some thought. Do you even know what the real you thinks and desires, or are you letting others make that decision for you rather than risk being vulnerable? Just some food for thought on this cold Ohio hump day. Blessings. Several people have reached out to me recently asking for an update on how I'm doing. I've been thinking for awhile about writing a blog and these inquiries have helped me decide to go for it. I had actually written a few blog posts 'just in case' and have shared one of those (and decided against the others).
I'm doing well overall. I've had three chemo treatments so far and one Gamma Knife Radiosurgery treatment. I have the second (and last) radiosurgery on Monday 1/15. I have chemo the next day - I'm starting the week with a bang! Overall, the side effects from chemo are not too bad. Not as bad as the chemo drugs I had the last time around. I feel nauseous for a day or two after, but I have meds that help with that. Otherwise, fatigue is my constant companion. And sleep doesn't come easy. I found out just before Christmas that the cancer is also in my bones, specifically, in my left arm. That is probably the most annoying symptom I am having. I'm left-handed and the pain is causing me to use my right hand for certain things. It also wakes me at night. I am feeling better than when I wrote the last post, which was on 12/23. My fogginess is better and I feel more like myself. I'd like to think that means that the radiosurgery is working and the brain tumor is shrinking. I've also returned to work. I started back after the first of the year. I am working as I am able to in between treatments and I'm also working shorter days. It's hard to work intermittently. I haven't been able to get into a good flow yet, but it hasn't been very long either. I'm realizing that this is a very depressing post. Yes, this sucks. It really, really sucks. But, I am thankful for each day. I am trying my best to focus on the positive and I have a lot of positives in my life. My husband. My kids. The rest of my family. My friends and co-workers. My job. Access to great medical care. Just to name a few. I have received so many cards, gifts and messages. I am so very grateful for each one of them. Thank you. Thank you. Thank you. I'll try to make the next post a little more upbeat :) Although I'm just now posting this, I wrote it on 12/23/17 I've heard a lot about mindfulness over the past few years. In books, TV (OWN - uh, hello), Instagram, yoga classes, podcasts and the like. And I get it. Focus on what you are doing in the moment. Slow down. Enjoy, savor, be grateful. Wash those dishes and feel the soap slide down your hands as you rinse the plates. Ok. I've tried it, and with some success. I have a practice of starting every morning in my special chair, with a cup of coffee and my daily reading books. I sit, read, pray and prepare for the day. I'm lucky in that I have flexible work hours. As long as I show up somewhere between 7 and 9, it's good, unless there is a morning meeting scheduled. So, as long as I get up early enough to allow myself the luxury of taking my time, I generally don't feel rushed in the morning. For me, that means getting up by 5:45 if I want to be at work by 8:45-9:00. So, I've improved in this area of mindfulness over the past 5 or so years. But now that cancer is back in my life, mindfulness has become almost a given, without even making the effort. My brain is a bit foggy, groggy and slow most of the time. I feel like I am moving in slow motion. I have to think things through and not move too fast, for fear of …for fear of something that I haven't figured out just yet. I haven't been to work in 3 weeks. So, I don't have that stress and mind-jumble going on. I have had a lot of Dr appts and treatments, but when I'm at home, I make my way through the day, reading, journaling, praying, Facebooking (it's old already), Netflixing and hanging out with my daughter who's home for the month. I also do little bits of work, when it feels right - some laundry here and there, some cleaning and cooking here and there. I do it slowly. And linearly. Not a whole lot of multi-tasking going on these days. And it's great. It takes concentration for me to even wash and style my hair (so I don't usually style it, unless I have an appt, and even then, hats are wonderful friends). I am a list-maker. It makes me feel organized and productive, just to make a list. So, after a few days of just winging it, I started making lists. That has helped me too. Most of the items on my list are pretty basic, but it gives me a sense of purpose and at the end of the day, a sense of pride. No, I didn't go to work today. I didn't organize the pile of papers that need to be filed. I didn't make supper. But, I did make the bed. I did write 4 thank you notes. I did heat up some supper for my husband when he got home from work (a freezer meal that a kind soul made for us). I've slowed way down. I've heard people say that they are thankful for cancer because of the perspective it brought to their lives. Nope. Not there. Not me. But, I do think I can honestly say that I am thankful for the slowness of my days. I don't know how long this easy slowness will last. On the one hand, things may pick up speed if I go back to work. At this point, I don't know if I will be going back to work after the first of the year or not. I'm trying not to think about it. I know that I will know what is right when the time comes. On the other hand, I also don't know when the almost numbing mindfulness may turn to just numbness or painfulness. I don't know. But, that's ok. I don't have to know. As for now, I'm taking it one day at a time, and one thing at a time. |
6 Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; 7 and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus. Archives |