September – 8 things cancer has given me

It’s September. It’s thyroid cancer awareness month. Many of my thyroid cancer friends are using social media to put the word out about thyroid cancer. To tell people to check their necks, that it’s not the good cancer like we are told, and that there are more body parts that get cancer than boobs. I have done this myself for many years. Shared my story, tried to help others. This year, I just can’t seem to work up to it. I am not in the right place “in my recovery” right now. I still want to participate in the support groups I am in, I still want to help the people I mentor, talk with my cancer friends. In fact, I am going to meet 2 of them next month in real life and am really excited about it. But I just can’t post about neck checking and radiation awareness and …. and all things thyroid cancer …… not right now for some reason.

So I decided to talk about what cancer has given me. Cancer takes a lot. Sometimes it takes your life. Some times it takes your quality of life. It almost always takes your time and well-being at least for a while.

But in my case I am at the point where I can look back and see what cancer has given me. Don’t get me wrong. I’m not one of those “sunshine and lollipop” girls. I don’t go around trying to find the good in every situation. In fact, I very often do the opposite. But I do know that cancer has given me some things.

1. A new perspective.  The summer before I was diagnosed with cancer I got a haircut. I hated this haircut. I could see that I hated it before I even left the salon. It was exactly the haircut I asked the girl not to give me. I remember this very well because I was “home” for the week and I went to my dad’s office and cried. I mean cried. Now, in my defense, I was like 6 months pregnant and had undiagnosed thyroid cancer, so I was a ball of horrible hormones. And I felt giant and puffy and not attractive at all, so having my beautiful hair ruined made me feel worse. But still. I cried about my hair cut. In front of people. My SIL tried to help me figure out how to style it and I got over it. I got a new haircut a few weeks later. 8 years later I have noticeably thinning, greasy hair. I mean really greasy. I can’t go 14 hours without it turning to grease. It’s one of the side effects of synthetic thyroid hormones and my body not processing stuff right. Thin, greasy hair. Nice side effect. I hate my hair. Even though I have a stylist I love now, I never ever like my hair much. I used to truly love my long, thick, soft hair. Now I hate it. You get the drift. BUT, guess what is the last worry on my mind almost every day of my life? My hair. I do it, I let it go. I don’t worry about it. It’s hair. I watch it fall out, I watch it get greasy. I take 2 showers on days we are going somewhere important at night. That’s it. Hair.

I use this perspective as much as I can. It helps. A lot. Things don’t go your way one day? Everything goes wrong? Life just seems to suck this week? It’s not cancer. You aren’t dying. Move on.

2. Inner strength. Nothing makes you feel strong like surviving a disease that kills so many people. People say “fight the good fight”, “you are a survivor”, “kick cancer’s ass.” That makes you feel pretty strong inside. But those moments when you don’t know if you can go on, those moments when you don’t want to go on, but you do…. those are the times that really let you know what you are made of.

3. Knowing how to take care of myself. Look, I was never good at this. I was a mess for the beginning of my adulthood. I didn’t know how to “function well.” I didn’t do the things I needed to do for me. Now I do. Now if I need to rest, I rest. If I need to meditate, I meditate. If I need to eat better, I try to eat better (work in progress here.) I do my PT stretches very day. I gave in to my migraine doc and I started taking pills to help me sleep when I need to. I say no to things I don’t have the energy for. I don’t hang out with people who make me unhappy or don’t add to my life in someway. I don’t do things that don’t benefit me or my family or make me happy in some way. I focus my energy on things I really value. I don’t party late or drink much or go out with my friends on the town. I miss that sometimes, but I also know it makes me feel badly for days. I take my meds at the same time every day. I don’t miss any. I see my docs when I need to. I get injections in my head and face and sternum and neck to help with my pain. Every 3 months for all 3 procedures. I get pedicures once in a while. I write. I read. I watch a tv show with my hubby most nights and we visit a little. I try to catch moments with my son and freeze them in my memory. I try to breathe him in. I like those times. I don’t beat myself up if I am not running around with a butterfly net trying to catch those times, either. I breathe. I love. I see the people who I love when I can. I try not to fight against or about things I can’t change. I try to change things I can. I work at staying in touch.

4. Being able to ask for and accept help. I went a long time without accepting help from anyone. I didn’t want it. I wanted to do things my way. I didn’t want to owe anyone or to let anyone have power over me. I accepted help from my parents (again, I was a mess a lot of the time) but I hated it because then I felt like they were in control of me somehow. And accepting help was a difficult as taking care of myself. Not a pretty place to be. Then I got sick. I got married, I got pregnant, I got sick with a newborn. Suddenly I couldn’t do anything. I couldn’t get out of bed, I couldn’t wash our clothes. I couldn’t get dinner on the table. I couldn’t do anything I needed to do. I accepted help from perfect strangers my parents conjured up, old friends of theirs, family members of friends of mine. I asked for help from friends. My parents became parents again – the kind of parents that get up in the night and feed your baby, the kind of parents that get up in the night and make you take your meds, the kind of parents who go to bed at night bone tired and wash your clothes and feed you. I accepted help from my sister-in-law. I accepted help from people in my parent’s church who I hadn’t seen in years, from my aunts, from cousins, from my brother, from my grandma, from my husband, from everyone in my life, it seemed. I got really good at sending thank you notes. This went on for over 3 years on and off. And even after the surgeries and treatments were over and the healing was beginning, I still needed a whole lot of help. I learned something about asking for help during this time. I learned it’s ok. It doesn’t hurt you. It doesn’t demean you. We have lost the ability to ask for and accept help in our culture and it’s a shame. Because asking for and accepting help – it doesn’t just benefit you. It benefits the helper as well. it benefits the people who help you, and their families. It “fills their cup” if you will. And now when I can help, I do. Because my cup needs filled as well.

5. Learning to live with change. I am not good with change. I never have been. That’s the way my world is. I like it this way and not that way. I want everyone to kind of stay the same and go along their merry way, doing what they have always done in the places they have always done them. But they don’t. And neither do I. We can’t. In 2006 I got married, I got pregnant, I stopped working, I had a baby, and I had my first thyroid cancer surgery. Those events are entwined in my psyche. I can’t think of one without the other. That year my whole life changed. And a few years later it happened again. And again. And again. Not just with cancer. With many other pieces of my life. I still don’t like change. But I am learning to live with it with some sort of peace. I am learning to try to stay in the eye of the storm instead of running headlong into the winds.

6. Learning that time is relative. 5 hours in excruciating pain seems like an eternity. Imagine months of it. Moments become days. Time drags on so slowly it feels like you are in one of those movies where the second hand on the clock takes 2 minutes to move. The secret is, it works the other way too. 5 hours meeting up with your cousin and best friend on the last day of your vacation can also feel like a long time. If you let it. If you slow down and appreciate it. If you stop stressing about where you have to be and why your kid is acting like a fool and what your in-laws are saying. If you slow down, you can slow down those great moments too. 3 days in ICU sucks pretty bad. 3 days in the mountains with most of your extended family you only see once every few years? That can be pretty darn cool. But you have to allow it to be cool. Pain takes you to the point where all you can focus on is the pain. That is why time slows down. In order to enjoy the good moments, you have to consciously focus on what you are doing right now. Focus on the good, focus on what your friend is saying. You only get to eat dinner with her twice a year, if that, slow down, listen, enjoy the sound of her voice. Drink in her words. Look at her eyes. Focus. Put down your phone, let your kid run all over the park and get dirty, ignore the distractions, slow down and listen. We don’t do that enough anymore, and we need to. I believe our minds and our bodies crave it. It’s a choice, and I try to make it.

7. Kindness. Sometimes I don’t chose to be kind. Sometimes I think it’s more important to be right, or to prove a point, or to tell someone “how it is”. That hurts everyone. Kindness matters. The other day one of my friends posted a little article on facebook with her opinion on it. I completely disagreed with her. As I clicked to comment and express my disagreement, I paused. I knew it had been a long week for my friend. I knew that if I commented there would be a whole long line of comments after mine either agreeing with her or I. I knew that it would cause unneeded stress for her. Probably for me too. For some reason I had latched on to this particular article and it was hard for me to stop thinking about it. I do that sometimes. My friend wasn’t hurting anyone, or ruining the world, or even hurting anyone’s feelings. It wasn’t really a big deal. So several times I told my self “kindness matters.” Several times I stopped hovering over the “comments” box and I told myself to stop. It’s a simple, simple example. But that’s what we have the opportunity to chose every single day. Yes, if you are hurting someone else, I am going to speak up. Other than that, I have decided that it’s more important to be kind when I can. Imagine a world where we all choose to be kind whenever possible. Imagine a world where people don’t flip you off in traffic, or shake their head at you as you cross the street, or sigh really loudly behind you in the grocery line. Imagine a world where we all treated EVERYONE else with kindness. Kindness matters.

8. Love. This one is more difficult to express. But love has been an important part of my journey. I used to close off my heart a lot. I am very empathetic and I love too much and too hard. I used to protect myself by keeping people at an arm’s length as much as I could. I tried to pre-perceive any pain that person might cause me and keep them just far enough away from me that I wouldn’t hurt so much when we said goodbye. I also made some bad decisions about whom I hung out with, and some of that arm’s length was justified.
And now? Now I find that if you love someone, that love will only multiply. You will receive so much more love if you give love. Yes, sometimes you love people who will hurt you. Sometimes they will hurt you really badly. Sometimes things in a relationship get really uncomfortable and weird and you just want to back away and run. Sometimes you meet someone whom you really just don’t like all that much and you don’t want to let them into your inner circle. And those things are all ok, too – in fact, sometimes those feelings are a protective reaction – that gut feeling that you should just stay away. Like when you see a snake or spider. Like when you pull your hand away from something hot. It’s natural. It’s good to listen to.

(Disclaimer: This part is not about people who hurt you physically, or people who hurt you intentionally over and over. This part is not about abuse or assault or people who take advantage of you. That kind of hurt is not useful and we all need to protect ourselves from it.)

(extra space, because here comes the important part)

What is not ok is to not love other people because of the one person who hurt you or made you feel weird. Or the 10 people who hurt you or made you feel weird. What is not ok is to stop allowing love in your life. What is not ok is to deprive yourself of love from other people and of loving other people because you might get hurt. Guess what? You get hurt. People hurt you. That’s life. Your siblings and your parents and your husband and wife and boyfriends and best friends and most frequently your children – they will all hurt you at some time. They will, most likely. And then what? What do you do? Do you stop loving them? No. You breathe deep. You work through it. You talk to them. Or you don’t and you find a way to let it go. You realize that they are different from you, they didn’t know they were hurting you, they didn’t know you were upset, or they were in a bad place. You move on. You move forward. Don’t, for the love of man, stop making new friends and loving new people. Don’t deprive yourself of that. You deserve love. You deserve people around you who make you smile, who make you want to be your best self. Who make you want to make time for them. Find those people. Love them. Make time for the people in your life you really need – like oxygen – and see them, or talk to them, or email them, or facebook them, or google hang out with them… there are many options. But do it. It may be inconvenient, it may take time or money. Make it happen when you can.

There are other things that cancer has taught me or given me. But these are my top 8.

I look back on my journey (which may not be over yet, but right here and now things look good, so we are taking that and running with it) …. I look back on my journey now and I don’t think “geez, I wouldn’t trade that for the world. Cancer gave me so much more than it took.” There are moments, hours, days, weeks, months that I would gladly give up in this journey. But, I do say, “I wouldn’t trade learning all those things, spending all that time with my boy, having all that time with my family, seeing the world through new eyes… I wouldn’t trade that part of it for the world.”

 

 

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Trauma and Hope – My Messy Beautiful

We collect tragedies and traumas, don’t we?

String them together like shiny, sharp beads on a cord to wear around our necks.

They glint and reflect the sunshine – showing themselves to all who see us.

This one is for the day I woke up long past time to get up for school and knew something was wrong because I had slept in – the day I woke up and found out my grandmother had died. My first real loss. This one is for the chest surgery I had 2,552 days ago – and all the rest of the surgeries and treatments and pain my cancer brought me. This one is for not being what my mother needed when she needed me most; even though she was always, always what I needed. This one is for the day I signed the papers for my son to enter special ed. This one is for one of the days I woke up not able to function in life, killing my pain with addictive substances and pushing out all the good people I knew. There are so many more. Some are bigger and sharper than others, but they are all there, shiny and sharp and making up my life.

I define myself, really, by these “bad events” in my life. I always have. If you ask me who I am, my mind goes to the days that hurt the most – because somewhere in my mind I think they shaped me the most. And they did shape me, both the tragedy and the relief and release and beauty that came from them all.

But, did they shape me the most?

What would happen if, instead of letting those beads define me, I made a necklace of good things that have happened in my life? What would happen if I let those sharp painful beads rest in my dresser drawer, underneath the socks and underwear for a while?

The new necklace would be full of bright colors and soft curves. Also shiny and also seen by all who know me.

This one is for the days I played in the park as a child, unafraid of the world – climbing trees and laying in the soft grass and hiding in a “clubhouse” of evergreen clusters with my friends and brothers. This one is for the horse riding at the cattle camp with my grandpa and uncles and cousins and dad. This one is for graduation with all my family there to see and all of my friends happy and smiling. This one is for the day I realized it wasn’t all horrible – that life is beautiful and kind and lovely as well. This one is for getting to know my brothers as adults and truly enjoying their company. This one is for the day my husband met his son, standing in the airport after a 15 hour plane ride, holding his 3 week old son and smiling. This one is for the first day I heard “Mama” and this one is for the snuggling and hair twirling and little kisses on my face. This one is for the day I signed papers for my son to enter special ed, but also realized that he is wonderful and beautiful no matter what – and that my job is just to help him, not to “fix” him. One for every family member and friend. Again, there are so many more, all different sizes and shapes. Also making up my life.

But that necklace, as beautiful as it is, doesn’t show my whole life either. It doesn’t shape me in the same way, it doesn’t let me learn from my mistakes and the pain and the sorrow. It doesn’t define me either.

So now, day to day, I am learning and trying to live in a way that allows me to have both. To put those beads side by side. The shiny sharp ones and the colorful curvy ones. I am learning to open my heart to it all, as painful as both the beauty and the sorrow can be.

We are not only our tragedy and trauma, and we are not only our hopeful and happy. We are messy and beautiful all at once.

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life

Life is hard. It is. It’s hard. And it’s lovely. Both. One of my favorite bloggers (Glennon Melton at Momastery) says that life is brutiful. Brutal and beautiful at the same time. I agree. But here is the secret: you can’t know one without the other. When I was young I was somewhat obsessed with quotes. Especially the inspirational kind. I would type them up (yes TYPE on a typewriter) and cut them out into little strips of paper and put them on my wall. One of those quotes was “you can’t enjoy the sunshine without the rain.” I have no idea who first said it or if we even know. It seemed to strike a chord with me. I didn’t know that I would one day learn (as perhaps we all do) how true that saying is. You can’t know happiness unless you know sadness. You can’t know peace if you haven’t experienced turmoil. Our understanding of emotion is based on how we interpret our lives. Sometimes things have to be difficult. Sometimes things have to hurt a little. It is only then that we have a comparison for the good things. That’s how life goes.

I have several friends struggling lately. I worry for them. One of the common themes I find in all people who are going through a hard time is the “I just can’t wait until this part is over” thinking. I do it too. Maybe it helps us get through that part of life. Maybe it’s a defense mechanism – it makes us think about how things will be different, better, later on. It gives us a point to focus on and push toward. It’s like running long distance and finally seeing the finish line. I think. I don’t run, but if I did I can totally imagine me seeing that finish line and it giving me a little extra nudge to get there. If that’s how it helps us, I don’t think it’s a bad thing.

I have always been a “runner”. Not the racing kind, but the “I can’t get out of here fast enough” kind. It’s like my default way of dealing with stuff. I would run away from problems. Either by moving or by quitting or by using a variety of “chemicals” to help me forget. Sometimes I just used sleep and tv. Sometimes food. In the past few years I have experienced some things I can’t run away from. Things that you have to face head on or be broken by them. I believe those lessons have made me a better person. I want to share some of what I have learned. Maybe one day it will help someone. Maybe one of my struggling friends will find comfort from it.

1. Pain is inevitable.

Pain is part of life and you can not escape it all. No one can. When I was younger, trying to find myself, I took some meditation classes from a Buddhist center where I lived. It was a lovely place filled with lovely people. They gave meditation classes to the public every Sunday night. I enjoyed what I learned there. We had lovely lessons and even lovelier guided group meditations. One of the things that struck me was a set of phrases they used. They told us that if you feel pain while doing your meditation (say your back hurts from sitting too long, or your leg falls asleep, or your foot itches), don’t move, don’t try to wiggle it out. They said that life is full of pain. Trying to run away from it or change it does not help you. Instead they told us that if we experienced pain during our meditation the best thing to do was to accept it, breathe into it, acknowledge it and just be in the moment. That the pain would pass. Pain can be physical, emotional, and mental in the way I am using it here, and trust me, they all hurt. I believe this ties into the “you can’t experience the sunshine without the rain” thought process. If you don’t allow yourself to experience the bad, how will you know the good? I actually used the “breathe into it, acknowledge it” part a lot in years to come when I had painful surgeries, when my son was born, or when my chronic pain tortured me. But let’s analyse this in a real life situation, because let’s be honest, most pain doesn’t come when you are sitting in the Lotus position and breathing deeply with a calm mind. Let me use an example. When my mom was sick it was very painful for me. (for her more, but we are selfish beings) I worried about it. I stressed over it. I felt unable to help, and unable to fix things and unable to even be there the way she needed. Those are very difficult emotions for me. They caused a lot of emotional pain for me. I always fix stuff. But I couldn’t’ fix this. When I would quiet my mind and meditate and breathe into the pain, it helped me calm myself back down and find a more centered spot. It didn’t last long, but it did help me center myself again for a while. When my mom died it had been a really hard 6 months for our family. I can tell you almost all of the moments during a 5-6 day period of time with my family during the time of her death and funeral. I can remember all of the love, all of the pain, all of the breathing, all of the faces, all of the kindnesses. Because there was nothing I could do but sit, breathe, acknowledge the pain. Roll around in it. Wrap myself up in it. When time slows down like this, you know – you know you are in a life changing moment, and I am thankful I was able to accept it in this way. That’s not to say I didn’t have pain anymore. Or I still don’t. But I did my best to treat it like a part of life. A moment to learn from. When my Grandfather died I was not in a good place. I was using alcohol and drugs to calm my mind. I was hiding out from my family – not keeping in contact. I was losing jobs left and right. I was living in a dirty apartment. I was unable to process my feelings about his death at the time. Because I ran. I am happy I was able to learn that lesson later. Not all people meditate (though I recommend it to everyone because it’s awesome), but that doesn’t mean you can’t learn from the hard parts of life. Attempting to push the lessons you may be needing to learn away, trying to stop things from happening, trying to shelter yourself or others, does not help anyone. It causes more pain because your stress builds up. Your worry intensifies. You do not learn the lessons you are meant to learn. You do not progress.

It is the same way with our children. We want to protect them, stop the bad things from happening, keep them from being hurt. Some of these things are wise and good – like keeping your child from playing in dangerous chemicals, or keeping your baby from putting things in the electrical socket. But some things need to be experienced by our children – it’s how they learn. When my son was a baby I read that the way a baby learns to stand and walk is by falling down. Falling down and standing back up develop muscles babies need to be able to stand longer and one day walk. Falling down also helps them learn how they are oriented in space, cause and effect, how to control their bodies, and many more things. If we keep our toddlers from falling down, we rob them of the chance to learn. If you have read very many of my other blog posts, you know that my son struggles from time to time in different ways. One thing he struggles with is social aspects of life. He is loud, persistent, expectant, demanding. He knows what he wants and he WILL get it. Sometimes other kids don’t like these qualities – they call him bossy or mean or tell him to leave them alone. When this first started happening my instinct was to run to help. I was the mama bear just wanting to keep him from getting his feelings hurt, and to protect other kids too. Because he would throw big fits, I got into the habit of kind of hovering. I would always go with the kids so I could intervene at any moment. I would try to protect him from other kids AND himself. It wasn’t until he stopped the fit throwing most of the time that he started to really learn what other people expected of him socially. I realized that was because I was finally stepping back and letting him learn it on his own. I was finally giving him space to get hurt a little, or mess up a little, or even lose a friend so he could learn how to act in a socially acceptable way. I was protecting him too much. You can explain to a person HOW to ride a bike all you want. Until they actually do it for themselves they can not learn it. Now, sometimes he still needs social cues, and I try to give them if I am there and able to hear what is going on. But I also let him work things out on his own. If he asks what to do, or gets upset, I will give him advice or hints. But I let him fall down sometimes so he can learn. There is a time for everything, including being in pain. There is a time to sit and breathe in the moment and just accept the pain and let it roll around you. Robbing my child of his chance to have those moments didn’t do him any services. Like a toddler who’s parents don’t allow them to stand up on their own some, he would never learn to walk if I didn’t allow him to get hurt some.

2. This moment will never happen again.

This lesson brought to you by the words Cancer, Parenthood, Alzheimer’s, Death, and Love. Actually this lesson was brought to ME by those words. Life is fleeting. It really is. When you are 5 years old, each moment can last all day. When you are 35 you turn around and your son is in Preschool and you don’t know how it happened so fast. You can never get this moment back. And thank goodness for that for some of them, right? Like the ones where you are elbow deep in child poo and can’t reach the wipes that fell on the floor. Or when you son comes up to you with his hands full of something smelly and brown and says “Mom, I think there is poo on the playground.” (thanks to a friend for this example) Or when you are at the store and your son throws a fit because he wants something and you end up having to haul him out of the store kicking and screaming while everyone watches you and (in your mind) judges you as a bad mom. (hm, that’s a lot more potty talk than I am usually prone to. sorry for those mental images) Thank goodness some of THESE moments are fleeting. But some, some you do need to absorb. To slow down and look around you and make a mental photograph. To remember the exact way his smile turns up. To remember the laughter at your silly faces. To remember your husband and son holding each other, trusting each other, loving each other. To remember your mom walking with your son, holding hands, telling him the names of flowers, pointing to beautiful things for him to see. Things you did not see yourself. If you are constantly in a rush, how do you absorb and remember these? If you can’t slow down and stop pushing forward, stop forging the way, how do you remember the lovely lovely moments in life? How do you let them into your heart? When I was at my sickest from cancer – when I was at my mom and dad’s house with my baby – my husband 500 miles away – trying to prepare for another surgery – when I couldn’t lift my son – I sat and looked at him. I watched him. I touched his hand, stroked his toes, kissed his head. I handed him the soft ball he liked to hold, or held a toy up for him to reach for. I tried to absorb all of the moments I could. I had nothing to do but sit. Sit and rest and let my body be strong again. And so I did. I sat and I paid attention to those things in my life I needed to remember. When they wheeled my down to surgery, doped up on Versed, all 4 times, I had one beautiful thought in my head. I remember consciously choosing to drift off into never-land with the image of my son yawning in my head. The first time was spontaneous, but it calmed me so much I made it the routine. From the beginning he did the funniest cute little pucker of his lips at the beginning of his yawn. I loved it with all my heart – that moment of pucker, that second of adorableness – and I clung to that image. I let that image be my life raft, bringing me back to him when the surgery was over. I couldn’t help but think that this is what it must feel like when we die. Flashes of the most precious things in our life. A look, a touch, a kiss on a forehead, a pucker. Slow down. Slow down and see these moments. When you are bent over a pile of paperwork, or trying to get the dishes done so you can help with homework and get the kids in the bath, or counting the minutes until bedtime…. stop. Listen for a second. Look around for a second. Capture a moment instead of pushing them away.

3. No one can live like this all the time.

When I was at my sickest, as I mentioned in #2, I was at my Mom’s house. She watched Grey’s Anatomy every week at that time. I was off my thyroid meds and couldn’t follow 5 minutes of anything, so I just sat and watched with her. One of the episodes had a scene – and this scene is branded onto my mind – involving “enjoying every single moment.” One of the women characters (Izzy maybe) had had a near death experience of some sort, and had been going around all week telling everyone to enjoy every moment, pointing out the beauty in every single thing. Telling people to just be thankful they were alive and stop bickering, thrusting her amazement at the beauty of the world onto everyone else. One of the other women characters (Meredith perhaps) told her to knock it off. She said she was glad that her friend had this experience, and that it helped her see the beauty in every moment, but that most people just can’t live like that all the time. Most people are just trying to get through the moment. ** That hit me as well. It was true. While I was sitting, getting stronger, absorbing every minute I was able to stay awake, my family was bustling around me. Arranging child care help, feeding us, cleaning up after us, helping me with showers, getting up in the night with my baby. I doubt they were able to absorb much of anything, honestly. And I realized that sometimes it isn’t the “season” for absorbing and loving and seeing the beauty. Sometimes it the season for pushing ahead, getting up and going forward a few more steps, pushing yourself to keep going. Like a child learning to ride a bike, if you fall down and just sit there and wallow in the hurt and think about how scary it felt to fall, you will never get on again. If you don’t pick yourself up and try again, you won’t learn to ride. Sometimes it’s the season of getting up and trying again.

4. Life is easier with those you love.

Find strength in those whom you love. In those who love you. Find happiness and peace and a place to be safe in your friends and family (whatever your definition of family is). Give to them as they give to you and everyone’s load will be lighter. I could go on all day about this one. Just know that in every hard moment, and in every good one, the people you love will make it better. And remember not to only call them when life is hard. Definitely call when life is hard, but also when life is normal or happy. Share all the times, not just the bad ones. My husband’s family is better at this than I am. They make time to get together, they drop by each other’s houses for coffee and tea. They see each other all the time. I have been trying to work on this more – getting together with people who make me happy, and children who make my son happy. We all need that in life.

I know that none of this is easy. Again, life isn’t easy. It’s messy and it hurts and it brings you to your knees sometimes. But it’s also beautiful and full of love and beauty as well. Life is brutiful. Live it accordingly.

** You’ll forgive my lack of knowledge about this episode of Grey’s Anatomy, I hope. I never was a devoted follower and I was so sick I didn’t know what was going on around me. In a thyroidless induced walking coma. If any devoted fans know this episode I would love to watch it again. It may or may not have been around the time of the “red mist” episode in which there is a bomb in the hospital – I remember watching that episode in the weeks I was there as well.

Fat, Fit, Free

There has been a large amount of press this last few weeks about weight, and fat shaming, and people not feeling good about themselves – or about people feeling good about themselves despite living in a culture that tells them they shouldn’t. Or about people who work really hard/hurt themselves/go to extremes to feel good about their body.

A friend of mine posted about it today and I loved her post because it wasn’t just about the societal issues. It was also about health. It inspired me to talk about my own story.

My opinion on this comes from a different point of view and I feel it is a valuable opinion that might help others out there.

First, a little background.

Most of the women I grew up around were a healthy weight. I remember them talking all the time about needing to lose weight though. My mom was proud of the fact that she was 98 lbs until after her second baby – she was also short so it wasn’t an unhealthy weight for her. After that she was always talking about the 5-15 lbs she wanted to lose, though I never saw why she needed to. Some of the other women in my family had closets full of different sized clothing because they were constantly trying to lose weight and went up and down the scale. Most of the women in my life, however, were a healthy weight and they were not super active, but busy with family and work and such.

As an elementary school child I was skinny – much more skinny than most of my friends. I remember being teased about it a little. Not much. I was never athletic – I was clumsy and didn’t enjoy running or sports or PE. In middle school and high school I was healthy – definitely not over weight but not super skinny. I still didn’t enjoy sports or exercise, except weight lifting. I had injured my ankle twice and had to do physical therapy after surgery. Part of that included going to the gym and I liked feeling strong and healthy when I could lift weights. When I was sixteen I went through some situational depression. I lost weight and the doctor had my mom give me carnation instant breakfasts in addition to anything she could get me to eat. That was the last time in my life I was underweight. When I went to college I put on a few pounds – the freshman 15 – because I was eating top ramen and noodles and cheesecake. I did exercise at the field house though and enjoyed that, especially with a friend.

During college I was put on a bunch of medicines for “psychological issues” and many of those had a side effect of gaining weight. After that I perpetually went up and down on the scale. Dieting, exercising, losing weight, then gaining it back again, being sedentary, eating poorly.  Most of the time I was a little overweight. Sometimes I was a lot overweight. That’s hard to say. But it’s true.

When I was 24 I had my gall bladder out. I found out that gall stones are often a result of extreme weight loss, which I had recently experienced. I had been dieting in a very unhealthy way and lost a bunch of weight and my body created gall stones and by the time they took it out it was gangrenous. I had a horrible recovery, staying in the hospital for 28 days and numerous drains placed to try and stop the abscess in my gut. I was so weak and sick when I got out I couldn’t walk around my apartment. Little by little I gained back my strength, but I don’t feel like I ever really got back to the health I had before that. I was also putting a lot of partying miles on my body. I’m sure that didn’t help.

I look back now and I wish I had realized the wonderful thing it is to have a healthy body. I wish I had realized that having a body that could run and jump and exercise and take a walk without asthma acting up or my vocal chord collapsing was a wonderful thing. I went through periods where I was more active and physical – running and eating well and going to exercise at the gym. I went through times in my life when I was less active – rather sedentary – and didn’t use my body at all. I went through times when the fuel I put into my body made me feel healthy and clear. And times when it muddled my brain and other body parts. I went through times where the work I did was very physical and I enjoyed being strong. I went through times where my work was very sedentary. But through it all, one thing never changed. I didn’t know how wonderful it was to have a body that worked well and allowed me to use it in strong, healthy ways.

Wait, let me say that again. I didn’t know how wonderful it was to have a body that worked well and allowed me to use it in strong, healthy ways.

And then cancer came into our lives. And my body forever changed. I won’t list all the ways it has changed, but there are a few that are important to this discussion. First – I have asthma. AND a paralyzed vocal chord. Sometimes breathing is difficult. Especially when I am exercising. Protip: Ya gots ta breathe to exercise. I have several parts of my body that are permanently damaged in ways that cause me extreme constant pain. I have limits to what my body can lift. I can no longer lift weights with anything but my legs. I can’t lift my body in any way – no push ups or pull ups or burpees or whathaveyous. I can’t lift my son. I can’t even do many of the household/gardening type activities I used to do – my pain flares and I am down for days. Carrying groceries is a monumental task. I no longer have a thyroid and no matter what they tell us, a synthetic pill just doesn’t completely replace the natural chemicals your body makes. I have fatigue issues. Many thyroid patients do. I have found ways to deal with the pain, with the help of some awesome doctors. But I have yet to find ways to deal with the fatigue. Still hoping to find that part of the puzzle. I get sick extremely easily. It seems we are sick every month and when that happens, I am in bed unable to complete daily necessities, much less exercise.

And now – now I see what a wonderful thing it was to have a healthy body. To have a body that worked the way it is supposed to. I see what I shouldn’t have taken advantage of. But… that is the way of health. You never really know what you have until it’s gone. You don’t truly appreciate being healthy until you aren’t. You don’t truly appreciate having a strong body until you don’t.

When I read these articles about “losing weight and being healthy and crossfit and boot camp and if I can do it you can too”… it makes me angry. It makes me angry that I can no longer do those things – because I think if I could again I would. I would never stop running and lifting weights and doing crazy crossfit workouts. If I could feel strong again I would never want to let that go. It also makes me angry when others don’t realize that not everyone is like them. Not everyone CAN do those things. That “if I can do it you can too” attitude isn’t the truth. I want to scream: “There are plenty of people out there who literally CAN’T do what you do. So stop shaming others and go enjoy your healthy body.” I love that they are encouraging others to use their bodies in a healthy way. If you encourage in a certain way, then it WILL help. But shaming others into feeling fat and “not the way they could/should/ought to be” is wrong.

Could I do more? Yes. I could. I should. I work towards that. But my body will never be the same. I will never do what I did 7 years ago. I will never be strong and healthy and full of energy again. I will never feel like I once did. I honestly think about whether I will live another 20 years and what I will feel like at that age a lot. The other day I said “blah blah blah in 20 years…” to my husband. He said “do you think you will live to be that old?” He was teasing. And he wasn’t. I don’t want 20 more years of pain and exhaustion. I don’t want to live in a body that often feels like a prison.

What’s the point of this post? The point is this: I encourage everyone I know who has a relatively healthy and strong body to use it. Use it in ways that make you feel good and alive and happy to be here. Use it in ways that make you feel like you are the king or queen of the world. Jump and dance and run around with your kids. Ride a mountain bike. Climb a tree. Go on a zipline. Run up a mountain. Feel the sun on your face. Backpack with your friends. Go to the school jogging club in the mornings with your kids. Take martial arts with your friend, or boxing, or ballet. Go rafting and ice skating and slide down slides. Go to concerts and dance until you want to pass out. Do all of this for those of us who can’t anymore. And do it for your family. And do it for you. Don’t do it because you want to see a certain person in the mirror. Don’t do it because you feel like you have to weigh a certain amount of pounds. Do it because it feels damn good. Do it because you are alive and you want to FEEL alive. Don’t put pressure on yourself to weigh in or measure up or have a certain body type. ENJOY your body. That’s the magic of the human body. It can be enjoyed. And the more you enjoy it, the better you feel. And the better you feel, the more you enjoy your body. It’s a wonderful “mysterious” cycle.

Use that cycle – love your healthy body – allow yourself to realize that all that really matters is if it works well. And if it doesn’t, well, you and I have a lot in common – and we still find ways to be happy and love life. That’s the big secret. Love life. If you do that, the rest is just gravy.

The Good Cancer

I have had 3 conversations in the last 3 weeks with people about thyroid cancer and it being the “good one”. One of my support groups also lost a lovely, young, vibrant lady to thyroid cancer this week. So, I decided I need to write another post about it.

(Please don’t feel offended, people I had these conversations with. I feel like if I don’t use the experiences I have had to help others, then it is all in vain. I participate in several support groups because I have a lot of advice to give. I try to educate about different parts of thyroid cancer. I just want to get the word out and I’m not upset or anything.)

When most people get diagnosed with thyroid cancer the doctor says “BUT, if you have to get cancer, this is the one to get.”

Totally true. That’s exactly what my doctor said and what numerous doctors and nurses and lab techs and radiology techs have said since.

Now, I know that doesn’t sound so bad. I know that it is meant to be encouraging. In fact, I felt encouraged by it at first. But I feel it does more damage than good. The following are the reasons I feel that way.

When my doctor (whom I love) diagnosed me he said “well, you have thyroid cancer. that’s the bad news. BUT if you have to get cancer, this is the one to get. We just take it out, you do a pill form of radiation, and you take a pill for the rest of your life and you are back to normal.”

First of all, even if I had had a straight forward, simple case, this isn’t actually what happens to most of us. I know over 500 thyroid cancer survivors and none of them had that experience. ALL of them have several long term lasting effects. I compare that to the 50 breast cancer survivors I was in an IRL women’s cancer support group with, only about 50% of them had any kind of long term effects. They were all surprised by my stories of what I felt like after and how my body reacted to not having a thyroid and such. Yes, some had neuropathy from chemo, some had lymphadema, some had burns from beam radiation. All had permanent changes in their actual breasts of course. But most were able to go back to their normal life after their surgery and treatment were over. (I am not saying breast cancer is easier or better. Just comparing my experience with the long term effects.)

Here is a small list of the side effects my thyroid cancer friends experience (I will be posting again with a more in depth look at this later): Fatigue, heat sensitivity, cold sensitivity, night sweats, hormone imbalance, early menopause, hair loss, skin changes (greasy, dry, infections, breakouts), lymphadema, sleeplessness, memory loss, short term memory problems, confusion or foggy brain, joint pain, muscle pain. Hypocalcemia, hypo vitamin D (both very serious problems). Problems with digestion. The RAI (radioactive iodine) almost all of us take causes it’s own long term problems: salivary gland damage which leads to dry mouth, tooth decay, bone loss, kidney or intestinal tract scarring and complications. One woman I know had her pancreas scarred by it and has had the absolute worst digestive problems that have required surgery and more. Dry eyes, tear duct damage, infertility. Once you take a treatment dose of RAI you can’t get pregnant or nurse for a year or it can harm the baby. Just the treatment itself is torture because you have to go off your medicine to become extremely hypothyroid (I was to the point that I couldn’t walk on my own or hold my newborn) and you have to go on a low iodine diet for 2 weeks. That is difficult when you are so sick from being off your medicine because you have to cook everything yourself. But the worst part to me is being isolated after it. We are told to stay away from adults for a full 5 days and small children or pregnant women for 7. In some other countries the times are much longer. Up to a month. When my friends who had chemo or radiation went to treatments they had someone take them and hold their hand and help them home. I had to go alone (no one can be in the car with you after) and swallow a radioactive pill and then go straight home and lock myself up away from everyone else for a week. My baby (5 mos) had to go stay with my parents for a week. It was torture for me to not have that human contact with anyone. And I got incredibly ill from the dose – I threw up for days. Imagine – you just had cancer surgery, you have been sick and emotional for weeks, and now you swallow a scary radiation pill that they bring out in a lead lined box and then they rush you out the back door and tell you to go straight home. You are sick and alone and extremely emotional (that’s what being off your meds does). And you are all alone. The radioactive iodine also gives you a higher chance of getting breast, uterine, ovarian, testicular, colon and other types of cancer. The most common side effect from the surgeries alone is vocal chord paralysis (which isn’t pretty, trust me) and parathyroid damage, nerve damage, and muscle damage.

So, let’s get beyond the side effects (this is by no means an all inclusive list) and lets look at thyroid cancer itself. Thyroid cancer DOES have one of the highest survival rates. Because we have the radioactive iodine we have good success with being cancer free one day. Thyroid cancer also has one of the highest recurrence rates. If my doctor ever classifies me as cancer free, I will still have to continue following it for the rest of my life because it is likely to come back at some point. Let’s put this in perspective: one friend of mine said “well, it’s not like pancreatic cancer that is most often a death sentence.” No. It’s not. Some people die from thyroid cancer, but it’s most often from a more aggressive form of it. The most common form is papillary and we have a good treatment rate with that. If you get thyroid cancer your chances of having it treated and taken care of are pretty high. If it has metastasized outside the neck the chances of being cancer free drop considerably – just like any other cancer. If it is a more aggressive variant (like mine) it changes your prognosis. Some thyroid cancers don’t respond well to RAI and they have to be treated with other meds or just surgically removed, or sometimes beam radiation can be used. Some thyroid cancers (like mine) mutate and stop responding to RAI. These thyroid cancers become much harder to treat as well.

One of the ways we treat our cancer is to take a “suppression dose” of thyroid meds for at least several years after surgery. I have had a lot of people assume this means I will have lots of energy and loose weight. That’s not how it works unfortunately. Being on a dose that constantly keeps your TSH in the hyper range can cause you a great deal of daily discomfort. It’s like running a car engine too hot and too fast for hours. What happens to it? It burns out or has to be shut off for a while. The same happens with us – we crash daily. We learn to dole out our energy carefully. Not spending too much energy on one thing when we know we will need it later. For me this has become a delicate balancing act. I take breaks during the day to just lie down for a good 15-20 min. If I don’t I will be exhausted by dinner time. If I know I am planning an outing with my son for example, I don’t get up and take a long hot shower and cook a big breakfast and do laundry and pick up the house before we leave. I do the least I have to and go early with my son so that by the time I have used up all my energy we can be headed home. Then I have to rest at home before attending to the normal daily things. Thyroid medications are not the same as your natural thyroid hormone. They don’t act in your body exactly the same way your natural hormone does and they have their own side effects or effects on the body – especially at the high doses we take. Mood swings, irritability, depression, anxiety, sleeplessness, digestion problems, skin problems, hair loss, memory problems, heat intolerance and more. Heart problems are one of the scariest side effects. Being on this high dose gives many of us palpitations or tachycardia. I have the latter and take a daily medicine for that. I take a daily medicine to help combat the effects of the other daily medicine I take…. JUST taking the medicine we have to take every day – especially when we have to take the higher doses – changes our life dramatically. Without the medicine we would get very sick, lapse into a coma one day, and eventually die. We literally can’t live without it.

To me, the worst part of health professionals telling me that my thyroid cancer is the good one to get is the attitude that pervades the medical community about it. First of all, I had ANYTHING but a normal case. I had great treatment once we found it and I have had the best doctors. Without them I would be dead. My first surgeon spent 5 extra hours because one tumor was wrapped around the nerves that control my mouth. He really wanted to get it out without damaging them. He was actually worried I wouldn’t be able to talk when I woke up. But I could. He did a great job. My body hasn’t reacted to the surgeries the way most people’s do and I have several permanent disabilities from them. I had 4 surgeries in 3 years and several treatments. Not to mention all the blood tests, ultrasounds, PET/CT scans and more. I am thankful that I am here to spend my life with my son and other family, but my life has changed in hundreds of small ways, and I don’t think it will ever go back. To tell people newly diagnosed with cancer – any cancer – that their road will be simple or easy does them a disservice. Do I think they should scare us, do I think they should tell us horror stories? No. But I do think they should prepare us. Prepare us that this IS cancer. This MAY change your life.

As far as the medical community’s view on thyroid cancer goes, that in itself upsets me. No one knows what to do with a thyroid cancer patient who is off their meds and comes to the ER with a very high fever. (this happened to me) Very few doctors know what is best to do in a thyroid storm or a calcium crash. In many parts of the US we don’t see an oncologist. I tried to go to the major cancer center here and they told me to go back to my endocrinologist. My endocrinologist follows my cancer and she is a good doctor. But I don’t understand why a cancer center excludes a cancer patient of any kind. I missed out on all the things a cancer center offers – financial help, social workers, psych help, family counseling, etc. because I had “the easy cancer”. When I talk to my other doctors about my health issues I have to explain TO THEM why we keep my synthroid high, why I HAVE to take vit d and calcium. I have to tell THEM why I can’t take extra dietary fiber because it affects my synthroid absorption  I have to tell THEM why birth control pills will affect my dose of medicine. It is a sad state of affairs when the medical community sees your disease as easy and nothing to worry about to the point that they have litte education about it at all unless it’s their specialty. It makes it difficult for us to get the care we need.

I want to talk about one more thing. Most of us have a PTSD reaction to doctors and testing and hospitals now. Most of the gals I know that went through the surgeries and the treatments and the trying to figure out what was wrong in the first place and the biopsies and the scans all have a very difficult time with doctors now. If the medical community (and lets face it – the world) tells us that our cancer is the easy cancer and doesn’t listen to our concerns, what are we supposed to feel? Surgery and treatments and tests alone make many people scared or anxious or affected in some ways long term. Couple that with the frustration of no one knowing what to do with us, and everyone telling us we got lucky when we got OUR cancer and it’s a recipe for disaster. Many of us had a hard time figuring out what was wrong and many of us have a hard time getting the kind of treatment we need long term. There are so many different “standard procedures” thyroid doctors follow in these cases that we don’t even know if we are getting the “normal” treatment or not. Even the isolation instructions vary from hospital to hospital after RAI. We don’t know how to judge whether our treatment is going well or not. How are we supposed to feel about doctors? Because at this point most thyca survivors I know have a hard time trusting medical professionals in general and have PTSD type reactions to even getting a regular physical.

This was a long post, and it doesn’t even cover all of what I find offensive about labeling thyroid cancer as a good cancer. It’s CANCER for the love of man, can’t we all at least agree that cancer isn’t good – no cancer is good? Please.

So, if you are a medical professional or know one, here is my advice. Simply change the dialogue. Say something along the lines of “Well, thyroid cancer IS normally one of the most treatable cancers out there, so I am happy for that for you. Still, I know, no cancer is easy or good and I’m sorry you have to go through this.” I believe it would go a long way toward helping out thyroid cancer patients.

What not to say to cancer patients.

My dear dear friend was just informed (over the phone by a nurse – ugh) that her cancer is back. After 8 LONG years of being in remission she has to fight this jerk again.

It is very difficult for me to just sit when something like this happens. However my friend lives far away and there isn’t a lot I can do this minute.

So….. I decided to write a post about things that are unhelpful to say to a cancer patient. (yes, this is just my opinion. Some people may disagree. That’s fine – they are allowed.)

1. “What doesn’t kill you makes you stronger.” First of all, this has as the first part of the statement the admission that the thing you are battling could kill you. Seriously? That’s what you want a cancer patient to focus on? Second of all, sometimes when you are going through cancer – going through the surgeries or the treatments or the tests or the waiting – you don’t feel strong. Not at all. You feel weak and vulnerable and in need of some strength from others. Or possibly in need of a day or two in bed – with no responsibilities and some funny movies and some tissues. Maybe some tuna noodle casserole. Some days you don’t want to be expected to be strong. Third of all, for me, this statement makes me want to tell “being strong” to screw off and head back to bed. Just because I’m a rebel.

2. Don’t talk about your uncle’s cousin’s brother who died from the same cancer. Or your friend who had to have chemo and was SO SO sick. Or how everyone in your family has had cancer. And died. Really, just don’t talk about death unless they bring it up. And then just listen for the most part.

3. “I’m sure you will be just fine! You are a fighter!” Thanks for the encouragement. What if I’m not sure I have any fight left? What if I’m not sure I will be fine. It feels like an empty statement. Don’t try to be overly positive. (“Well at least you won’t have to shave your legs when you have chemo.”) What would be more helpful is for someone to say “Wow. I have no idea how you must be feeling (even if you think you do). But please know am here for you to talk to. Or to get out of the house. Whatever you need.” AND THEN be there for them when they call. Listen.

4. “Let me know if I can do anything.” Cause honestly, we don’t have the energy to go around asking for help and telling you what we need. We are exhausted. We can’t begin to tell you what we need. We can’t even make ourselves a list of what we need. The best things you can do to help is this: “I am going to bring by dinner tomorrow night around 6. What sounds good?” “The gang at the office want to make some freezer meals for you. Is there anything your family doesn’t like or can’t eat?” (make sure to include some healthy foods in this – often foods brought over are fatty, carb loaded and heavy. Cancer patients need good nutrition. Add some veggies, a salad, or a nice fruit bowl for dessert.) “I can help babysit on Thursdays and Saturdays at these times. For several weeks. Could I take your kids to the park so you can rest?” or “When you have your surgery, I can watch the kids, also, the next few days so your support team can take care of you instead of feeling frazzled. Here is my number.”

5. When someone tells you that they have cancer, don’t say “My kid has had the flu all week. And you know how I hate vomit.” (yes, that really happened) “I had an ovarian cyst that put me in the hospital once. I totally know how you feel.” I would think this would speak for itself, but apparently it doesn’t. When someone tells you that they have cancer a lot of people don’t know what to say. Try not to fumble for words and just listen. Say “I’m so sorry.” Say “How are you feeling today? Do you want to talk? What is the plan from here forward? Can I go to your doctor’s visits with you?” Etc. Don’t compare, don’t assume you get it.

6. “Wow. That sucks.” Really? Cause I know it sucks. Thanks for the reminder.

7. “God doesn’t give us more than we can handle.” Really? Cause right now I feel like I have a hell of a lot more than I can handle. Not only that, but if I DID believe in the kind of God you are talking about, I wouldn’t believe he/she was sitting somewhere watching me, measuring just exactly how strong I am and giving me JUST the right amount of crap in my life. JUST THE RIGHT amount of hell I can personally handle. Letting me feel just the right amount like I have been abandoned by all of the good in the universe and that I can barely BARELY get through the day laying in bed, much less do anything else. That he knows EXACTLY where my breaking point is, and even though I think it was 2 surgeries and 2 years ago, apparently I was wrong. That image – it doesn’t help.

8. “Everything will be just fine.” Maybe it won’t. And not only that, it’s ok for people to be scared. Say “I know you are scared. I can’t imagine how you feel. I am scared for you. Do you want to talk? Hold hands? Hug? Do you want your Ipod with your “soothing music” playlist? The movie “Footloose?”

9. “My aunt has a natural treatment that CURED her cancer. No, she wasn’t ever actually diagnosed. It’s made out of dirt, dust mites and spring water. It’s only available in Italy – but it totally CURED her.” I am just going to leave it at that.

10. Don’t try to push treatments, different doctors, surgeries, different hospitals, etc. If your friend asks, tell them “this is what I think helped my cancer the most…” “this is the doctor my doctor recommended.” Right now their treatment plan is the only thing they have control over, and they need to feel confident in their decision making. I had a doctor (who I love) send me to a new surgeon. I had another doctor (who I also love) ask me to please go to a different surgeon just for a second opinion. When I said I didn’t want to, she respected that. Turns out I really should have gone to the second doctor. I saw him for the next surgery and he did the one thing that truly turned my course of treatment around. She never said “I told you so” or “You should have listened.”

11. “Oh, I heard that’s the best cancer.” or “Oh, you don’t have to do chemo? You are so lucky.” or “Well, at least it’s not _______ cancer. I know three people who died of that.” There is no best cancer. There is no best cancer treatment. (yes chemo sucks. big. so does radiation, radioactive iodine, surgery, bone marrow transplants, etc.) Everyone’s cancer journey is different, and most of us feel like our road is pretty much sucksville.

12. Don’t ask if they will loose their hair, what their new boobs will feel like, if they will have a lot of scars, etc. Honestly – they don’t know and you don’t need to.

If you DO happen to do any of these things, or worse, just stare at them in horror and avoid them for a week, the harm is not irreparable. But don’t pretend it never happened. Say “I’m sorry I acted like a moron. Can I try again? I’d like to be there for you. I was shocked, but I’d like to show you I can be there.”

The things that are helpful:

ACTION. My mom is my best example of this. If you were having a kid she packed a bag. If you were having surgery, she packed a bag. I ended up in the hospital for a week with sepsis, she packed a bag. I had a cousin who needed surgery and my aunt had something that prevented her from helping. Mom packed a bag. She didn’t ask, she didn’t hesitate. She came to my baby shower one weekend. The very next day after she left I was told I had to go on bedrest. Guess what? She packed a bag, got her work stuff to bring down, and came right back. The next day.

I’m not suggesting you move into your friend’s house or head across the country for someone you haven’t seen in 10 years (unless they ask and you can). But take over dinner. Send a pizza gift certificate. Take a funny movie. Take them out to a movie or dinner if they can go, or take it over to their house if they can’t. Send a card. Make a phone call. Plant some flowers in their planter. Do some laundry. Tell them you know a great housekeeper and you are sending her over on your dime for a couple months. (I wish I could do this for all my cancer friends.) DO something.

Listen.

Hug.

Smile.

Cry.

Follow their cues.

 

Edit: I wanted to mention one other thing. My mom was a great nursemaid. She helped me get dressed, prepared sitz baths, helped me learn to nurse, helped me dress wounds, helped me put on a bra when I couldn’t, propped me up in bed when it hurt to lay down, took care of my son and my husband, emptied drains, helped me pull out stitches that had become abscesses (with my dr’s direction). My aunt also came to help me for a week after one surgery and she has always doubted whether or not she helped me. She did. She cleaned my closets, she entertained and exercised my son, she re-potted my plant, she fed us, did laundry, took me to the store, helped me walk down the block, made sure my house was spotless before she left so I didn’t have to worry about that part of things. She made me laugh. She was kind. She was just what I needed. A breath of fresh air and lots of good energy. Everyone can help in their own ways and according to their own personalities. Never doubt that there is something you can do do help someone who needs it. What you can do might be just what they need.

Thyroid Cancer Awareness

I have decided that thyroid cancer needs some awareness. Since September is Thyroid Cancer Awareness Month, I thought I should write a little about it.

Most people know all about breast self exams, mammograms, pap smears, prostate exams, colonoscopies, and more. We know that there are preventative things that doctors can do to try and find cancer in it’s early stages.

Do you know about a neck self check? Do you know to ask your doctor to check your neck?

http://www.thyroidcancercanada.org/userfiles/files/Thyroid_Neck_Check.pdf

This is the best, most well explained info I have found on how to do a neck self check. Also, when you go in for a regular well check, or a well woman’s check, your doctor should be feeling your neck, telling you to turn your head and swallow, and feeling your neck for any nodules or inflammation of your thyroid.

There are plenty of things you can do to help prevent cancer as well. None of them are sure fire, of course. But there are things you can do. http://www.mayoclinic.com/health/cancer-prevention/CA00024

The number one thing I would say to any patient is this: if you feel like something is wrong with you, don’t give up trying to figure out what it is. I went in to my doctors for 3-5 years before my diagnosis with complaints. They were varied complaints that honestly could have been many things. I had strange menstrual issues, I was exhausted all the time, I had skin infections, I wasn’t healing like I used to if I got some sore or cut, I was bruising, I wasn’t sleeping well, I felt my hormones were off, I was gaining weight, I was generally not feeling like myself, I was heat sensitive. Several times, and during my pregnancy too, we thought it might be thyroid related. My blood results always came back normal. I believe if we had done more than a simple TSH (done a free T3 and free T4 test) we may have had a better idea that the thyroid was off, but I don’t know for sure because I didn’t even know to ask that. When I had a lump the size of a ping pong on my neck during my pregnancy I talked to 3 different doctors a total of 7 times about it. Finally in the 8th month of pregnancy my allergist decided to ultrasound it. But I went into early labor and we had to reschedule for the week after my son was born. If I hadn’t pushed and asked and asked and asked, we would have never found it. Yes, it was frustrating for doctor after doctor to tell me I was fine and I just needed to loose weight, eat better, sleep less, work less, sleep more, eat less, exercise more…. over and over again. But eventually we found the problem. If we had been able to catch it earlier it would have been easier on me for sure. But my thyroid never had any nodules, the cancer that was in it was very small, it had just spread a really long way. (you can read more about my cancer journey here: https://fishjello.wordpress.com/2012/04/23/did-they-have-to-take-out-your-heart/)

Doctors believe that the recent rise in thyroid cancer can partly be blamed on radiation. We have much more radiation in our environment than we did 200 years ago. We have all sorts of electronics, cell phones, airplanes (an airplane ride apparently has a lot of radiation), microwaves, x rays and metal detectors, and more diagnostic radiology than we have ever seen before.

Let’s talk about diagnostic radiology for a minute. These are things like x-rays, mammograms, CT scans, PET scans, medical radiology like people get for cancer, and more. I have learned that my thyroid cancer most likely came from a set of CT scans I had when I was very sick with an abcess in my belly following a gall bladder surgery. I had 12-15 CT scans in one month (the insurance and hospital have differing records on how many I had.) The doctors were trying to save my life. And they did. But that is a whole lot of radiation. A nuclear physicist figured it out for me that it was approximately 65 years of background radiation. (that is how they measure it – they compare it to normal back ground radiation and how long it would take you to accumulate that much radiation.) I have also had many many dental x-rays, many x-rays, and many other CT scans for things like kidney stones and migraines besides those 12-15.

I have also learned that sometimes you have to stand up for yourself in your own health care. The first thing you can do to help diminish the effects of this type of radiation exposure is to ask for a thyroid shield when you are getting a test done. Some tests don’t have thyroid shields, some tests can’t use a thyroid shield (for example, if it’s an x-ray of your neck you can’t use one because it will interfere with the picture). I have started ALWAYS asking for a thyroid shield. If they can’t use one, or there isn’t one for that machine, the tech is experienced enough to tell you, and to get you one if there is one. I have run across plenty of techs that don’t use them on a regular basis, so I always ask. I especially ask for my son. He was getting an x-ray of a broken foot done. When I asked the tech to put a thyroid shield on him the tech lectured me about how the dose is very low and the beam would be far away from his neck. I said very politely that I had gone through 3 years of hell because of thyroid cancer and to please get my son a thyroid shield and not lecture me. Then he took an x-ray of my son’s foot – with my son sitting up, leaning forward to get the proper angle, and the machine directly over his head. I am not saying the tech didn’t know his business, but his neck wasn’t as far away from the beam as he initially indicated.

Do not be afraid to ask questions and do not be afraid to stand up for yourself or your family. Another thing I think people need to be educated about when it comes to diagnostic tests is to ask whether something is necessary or not. Is this CT of my head really necessary? What are we looking for? Does this test give us more information as to what my condition is, or is it just precautionary? Will your course of treatment be affected by the outcome of this test? For example – you are having sudden onset of migraines that are so severe they are impacting your life. You have never had migraines before and you are missing work and personal activities because of it. A CT scan might be prescribed by your doctor to see if there is something physically causing your migraines, and it might be important in ruling out things like tumors. I would probably get one if my doctor suggested it. On the other hand, a friend who is pregnant and has thyroid cancer just recently broke 2 fingers. The doctor wanted to do an x-ray to see whether they were actually broken. She asked what it would change. Would it change the course of treatment? Would it change what they did to make her better? The answer was no. Whether it was broken or sprained, they would splint it and have her apply ice and use other comfort remedies. She decided not to get an x-ray. It is just a little bit of radiation – but to an unborn baby it is more, and to a cancer patient trying to limit her exposure to radiation, it is worth asking and thinking about. I always have frank conversations with my doctors. Does this kidney stone feel different than the others? Are we worried about an infection or blockage with it? Why do we really need this CT scan.

Be your own advocate. Be an advocate for your family. Ask questions. The most dangerous thing a patient can do is blindly follow their doctor’s advice without knowing what their condition is, what it means, what needs to be done for it, and why your doctor is suggesting the plan they are suggesting. Educate yourself on what the tests mean, what the “normal” course of treatment is for any ailment you have. Educate yourself on the things that you should be doing at home to help. For example, a nurse told me that after surgery eating a very high protein diet can help speed healing. Very high carbs and fats can slow healing. There are things you can do at home to help your healing if you ask or read about it. Yes, your doctor went to school so they know more about most medical things than you do. But that doesn’t mean they know everything. It also doesn’t mean you should blindly follow them. Be a partner in your care. Don’t “google self diagnose”. Do figure out what questions you have and ask them. Write them down and ask them.

Check your neck. Ask for a thyroid shield. If you don’t feel well, keep trying to get to the bottom of it. If you get cancer, fight like hell. Thank your family or friends for all they do to help (thank you family and friends.) And most importantly, spread the word to others. Cancer of any kind is most easily treated if caught early, so get ALL of your preventative tests done.

Dear Cancer:

There is a funny thing that happens to you when you survive cancer. (all of us are survivors from the time we are diagnosed until the time we die – even if we are still fighting) Cancer starts to define your world. Suddenly you see cancer license plates and t shirts everywhere. You see women with chemo head and ports tucked under pale people’s shirts. You see children who have chest scars like yours and you see people who are obviously loosing the fight if not to cancer, then to another terrible disease that mimics it. I was in Walmart one day and a young teenage girl stopped dead in her tracks looking at my scar. She slowly unwound a scarf from her neck and I saw a fresh thyroid scar. I seriously teared up. We had an instant bond, and it hurt me to see what she had gone through at such a young age.

Perhaps this happens with all major diseases, I can only speak to cancer.

Another funny thing seems to happen. Some nameless, faceless, bodyless thing becomes your enemy. You rail against it, you hate it, you curse it, you hope against it, you talk about it, you want to tell people what to do to “try not to get it”, you answer questions in a grocery shopping line or the museum check in area. When the lady behind you sighs and takes a step closer because she can’t believe you are taking up her valuable time by talking to the cashier about cancer, you shoot her a withering look as if to say “I am talking about CANCER here, lady – step back and wait your turn, cause this stuff matters!!!”

I found out today that a person I knew growing up died of Kidney cancer. He was the father of several girls in my age range. Last week the mother in law of a cousin died of cancer. She had fought it far too long.

I feel like I am personally being attacked when this happens. When someone I know, or know of, is diagnosed with or dies of cancer, or has it return… I honestly feel like it’s a personal attack. I don’t know why this happens, or where it comes from. I do know that I’m not alone. Many of my “thyroid cancer sisters” I’ve met over the internet feel the same way.

I may not know where it comes from, but I can put into words EXACTLY how I feel, because they run through my mind every single time.

“Hey cancer, fuck you! We have had enough of you in my corner of the universe. You need to get out because I dealt with you long enough that no one I ever know or even know peripherally should ever have to deal with you again.”

I truly feel this way, in my core.

Yet that’s not the way it works. I have had several friends contact me to say their parents or other relatives have cancer. Most of us have a friend or two that go through cancer in their lives. My grandmother died of lung cancer, my other grandmother had to go through treatments for breast cancer (luckily caught early), my father had prostate cancer. It doesn’t matter how long you fight it, or how hard your battle is, it doesn’t exclude you or your “clan” from having to deal with it again. THAT is why cancer is a ruthless, evil, downright ugly piece of no good garbage.

I wish that my experience could save my son from this fate. I hope he never has to see another person he ever knows go through this. But the chances are not only that someone else he loves will go through this, but also the chances of HIM getting it are higher, because he has it on both sides of his family.

Cancer sucks. It sucks big time, and I hope one day to see better treatments and better preventative medicine in this field.

Until then I suppose I will just keep fighting it in my life, and hating it in other people’s lives.

Sleep Issues

I have had sleep issues since my late teens – started having insomnia. I didn’t have a hard time falling asleep, it was the waking up at 3 am and not being able to get back to sleep that was the problem. I do remember having terrible vivid nightmares at a young age and having to go to my parent’s bedroom if I could even get out of bed. Sometimes I was just frozen with fear. I still have nightmares off and on, but having a son has helped my insomnia – I sleep much better now, because he wears me out.

It seems my son has inherited my sleep issues. (I know it’s not from his father – he sleeps like a log any time any where.)

When my son was a baby he had terrible night terrors – it started about 8 months. He also could never put himself to sleep. We tried all sorts of “methods” but he just couldn’t do it. Now looking back I think everything was “too loud, or too scratchy, or too tight, or too loose, or too hot, etc” – that’s how he is now, but of course back then he couldn’t tell us. So, when I was at my sickest and needed my rest, we brought the baby into our bed. He had to sleep, we had to sleep. It seemed the best solution.

We moved to a new house when he was a little over a year old. He did not like the upstairs in that house. I was never sure why. He wouldn’t play in his room, he couldn’t sleep in his own bed, he cried in our bed. My husband started sleeping with him on a blanket bed on the living room floor. Yep, you read that right… That was the only place he would sleep. And my husband got up at 4 am to go to work, at which time I went to the living room floor to sleep with him. It was really ridiculous. We were still trying unsuccessfully to get him to sleep alone. He needed to touch someone when he was sleeping. He would put his feet on us and push against us. He would push his head against us.

We moved into a new bigger house and we tried to get him to sleep in his own room. To no avail. He was just over 2 years old at this point. I had another surgery and my husband tried to sleep with him in his room on a futon bed. We put a toddler bed in our room and he would sleep there part of the night and then move to our bed in the night.

He still had night terrors – woke up screaming, shaking, crying real serious sobbing tears. He woke up so upset from them he couldn’t go back to sleep. When he was old enough to tell us what they were about, sometimes they sounded terrifying “I fell into the big water and couldn’t breathe.” And sometimes we didn’t understand why they were so scary to him. Once he had the worst dream that his dad stole his cookies. His dad couldn’t come in the room without him throwing stuff and screaming at him.

At this point he was coming to our bed some, I was going to his bed some. Neither of us were really sleeping.

It wasn’t until he was 4 years old that he stopped waking up all night and started staying in his own bed in his own room for most of the night, most nights.

I decided it must be a comfort problem. I got him the most comfortable types of pajamas I could find. He liked the all cotton ones that were tight – like long johns but not textured. I bought them. (they are expensive from a specialty store) I finally decided we had to buy him a better bed. We bought a double bed with a good mattress (I mean, not a sleep number, but not a cheap one), we bought him very nice soft sheets that fit the mattress well. We bought him new pillows and rearranged his room.

All this time I had been doing the bedtime routine and the quiet time before bed and all the things the experts say to do.

Finally, finally he started sleeping through the night for real. And finally I started getting him to go to sleep on his own. It was hard work, I still had to check on him several times when he was falling asleep. But he did it.

He hasn’t had as many bad dreams and rarely wakes up at night. He has had a few big bad dreams, but for the most part he is ok.

Every time we take a vacation or something it throws off his sleeping. I try to stick to the schedule and if possible have him sleep in a bed separately from me. I try to keep him on track.

I was gone helping my mom for a week last month. His grandparents here refused to make him go to bed, so he didn’t get to bed until after 10 most nights – way later than his usual. My husband let him sleep in bed with him. I got home and felt like I was back to square one. I guess with a kid like him 7 days is just too many to let him be off schedule.

It has been 4 weeks. He is still telling me he can’t sleep alone and refuses to go to sleep on his own. It takes so much out of me and so much out of our evening.

In a couple weeks we are also going on vacation, so I know I shouldn’t push it. We will just have to go back to the way things were when we get home….

Sigh.

Broken

There is a beautiful ancient Japanese method of repairing broken porcelain. It is called “kintsugi.”

The legend is: “A Japanese shogun broke his favorite Chinese tea bowl, and sent it back to the same artisans who made it for repair. The bowl came back properly repaired with glue and metal staples. The shogun could not believe his eyes: ugly staples connecting delicate pieces of porcelain – surely that was not the right way to do it. In response Japanese artisans invented kintsugi: a technique of repairing broken pottery with special gold-containing lacquer resin. Pieces repaired in that way became even more beautiful and valuable than when they were whole.” Apparently the stories say that rich people in Japan would purposely break their favorite tea bowl in order to get it repaired using this technique. Many museums now have these beautiful pieces of art.

Image

I feel broken a lot. My body is broken in a lot of ways, and I feel broken inside some days too. Not to the point that I did as a young adult – unable to function at times – but still, broken, sometimes worthless, sometimes unhappy with how my life has turned out.

I try not to complain about my circumstances. I know many people who have it worse off than I, and I know there are many more out there who suffer in ways I can’t imagine. I try to remind myself of this a lot. I actually have a very good life and lots of love and kindness in it.

So, on the days I feel especially broken, I look at some of the pictures of these lovely bowls – you can google “kintsugi” and find dozens of pictures – and I feel better. Sometimes being broken doesn’t mean the end of things. It can mean the beginning of new things. IF you are willing to let yourself be stronger and more beautiful with your broken pieces.