Thriving after cancer is hard work, May I please take a nap?

Let me start by saying that I am grateful to be alive. Even more I intend to live everyday I get in some way that is consciously more involved and aware than the day before.  However, there is a real trend developing with high expectations about what survivorship looks like. With survivorship on an upswing (thank goodness), more than ever we are starting to look at survivors with a "what's next" attitude.  I think it's really a fantastic thing that we have this problem. More survivors is always a good thing, second only to less cases to begin with. There is this idea that after you face your death head on and live, there must be some greater purpose. As a survivor there can be a lot of pressure to do something profound. There is this idea that you need to find a deeper meaning and purpose in your life. I agree, when faced with something like this it is a great idea to re-evaluate your life and choices. Let me tell you what I went through though, as well as, many people I have known.

SO. As I have been telling you my story this is jumping ahead a little but its been on my heart after several people I know have really experienced major episodes of depression, of heartache, even in one case a lovely person who talked about feeling like a failure for not doing more.  When I questioned this my sweet friend explained that she was getting a lot of comments that she should be talking to people or advocating, or something more to give back. My heart was in a vise. I have been there. Feeling run ragged trying to keep up when I wasn't even whole yet, on a plane more than the ground because I didn't want other women to ever find themselves in my shoes. Not because of a lack of information. So I stumped my way across the country. I do not regret it. not one second. That said, I would love to talk to that woman who worked like her feet were on fire and tell her what I know now. Well This is what I would say.

Sit down. Take time to breath. Read a book. Sleep. These things are just as vital to survival as chemo, radiation, surgery and the like. There will be time to talk. There will be plenty of opportunities to "give back", and to use your voice. Its hard to rest when you feel like you have something to say. When you feel like you have a cause, a passion, a mission, you want to power through. Cancer picked a fight with me and I was fighting back. I wouldn't sit for it. Not for even a moment. Sounds great, a survivor full of passion, full of fire fighting against the bully. Unfortunately, I had not really taken the time to rest. I had no intention of allowing myself to wallow in the dispare I felt.  I cant really explain why I found this so hard, it was like I was a failure if I let myself grieve for all I had lost. Well I was very wrong.

I know now that the universe has a  way of putting you in your chair and taking a time out. My body needed time to rest and become as whole as it would ever be again. why didn't I listen. When women have children they tell you it will take your body almost a year to really return to its original pre-maternal condition. So why did I not realize that when my body was dissected, pulled apart that it might take some time before it was normal. Add to that, the mental and emotional side effects that come after cancer and its treatment. I keep a sense of humor about it but its not all fun and games. At the end of the day I am still here fighting healing and learning to thrive.

You want me to put my feet where???

When I was first diagnosed did not comprehend the indignities that my body and soul were about to go through. These things happen to so many people I wonder if we as a collective take the journey for granted. Cancer is so common and "we" are bombarded with cancer awareness and treatment, including commercials, billboards posters pamphlets I worry about our expectations. I'm not saying this is a bad thing, it's so wonderful that as a whole we are willing to hear and share so much information. It is one reason survival is so much more prevalent. However, until you live through something you can not truly understand it. It's the difference in empathy and sympathy. So how does a cancer patient, how do I, help people understand the quirkiness, anxiety and fear they or I feel?

First of all, I had three highly invasive surgeries, during which, my cancer was cut out of my body ripped apart and then rebuilt. The first surgery was several procedures in one. A very comman practice which makes it all too easy to minimize what is lost. At least it was for me. I had a radical hysterectomy which is the removal of the full uterus, cervix  and in my case a portion of my vagina. I had a bi lateral salpingo oopherectomy (bye bye to both overies and fallopian tubes)  and to add insult to injury I had a lymphnode dissection and then removal of other nodes. During the course of that first surgery a nerve was damaged, leaving serious neuropathy. I had a top rate surgeon, but when cancer is involved sometimes a nicked nerve is much better than letting cancer set up camp. I Had some issues waking up from the anesthesia which is normal for me, but otherwise that was uneventful in medical terms. Emotionally, the damage didnt show up to the party, for quite some time.

Only a few months later, I had the second surgery. It was invasive and painful, and I was determined not to let it affect me either. Unfortunately, I chose to have the surgery in the a.m. and then continue about my day and try to pretend it didnt happen. I say that because not allowing my self time to heal in between has caused my recovery to be slower and less successful. It also doesnt allow muc time for grieving what you lose each time. It all comes out in the wash as they say and in hindsight I should have taken the time. It was m decision and mine alone. If a regret is to be had, this is it.  Follow that with a ton of testing and genetic counceling, and soon it was time for surgery number three.

The third surgery was a reconstruction and repair surgery hoping to eleviate pain, and functionality. I've spent so much time with my feet in stirrups I'm starting to think I am a cowboy! I now pick out my wardrobe based on what socks to wear and what would cover me the best without pants.  I Think alot about how humiliating some of the things have been . How many strangers have seen me naked? I tried to count once and felt sick at over a hundred.

Here I was a thirty six year old, no longer able to have children, though I have a wonderful son from BC. Before Cancer. I found the man I was married to for over seventeen years has decided this is the best time to start a new life with other women. He moved out of our room on the day of my surgery and never moved back in. Add heartbreak to the devastation and humilation to boot. The humiliation I felt having my husband walk out so publicly and for another woman. Of course I know I am better of now. But tell me, how many of you want that sort of thing to be what everyone is talking about? So in front of everyone, and while I was sick and fighting for life, my son and I were thrown like tops on a floor spinning out of control. I tried to fix the marrage but nothing ever really worked. I was on my own with my son. Trying to build a man out of the clay as you do when raising boys is hard when you have become a puddle of mud. But God knew. He knew my needs, He knew my beautiful sons needs. He made a way. The divorce is something I will talk about later, but it deserved mentioning since it added yet again to my humiliation in the moment.

In those early days, I would wonder what else would I endure. How much more could I take? Then I decided, I can handle this. God is with me and if I trust in Him then I trust His plan is perfect. Besides, what was I going to do? Walk around crying all the time. I'm not built that way. Ok my Mom could have done with alot less of my "humor", but that's kind of how I deal. Well that and staying busy. unfortunately as I learned you cant outrun what life is throwing at you. You have to pull yourself up by the bootstraps and keep on moving. I no longer get frustrated when I hear alot of "this too shall pass" and "God wont give you more than you can handle", as I used to. I just remember that first, of course it will pass. The world doesnt stop turning. So if I am breathing I am living, Second, Of course God will give me more than I can handel, but He will never give me more than He can handle. So I turn it over to him and trust. I do all I can and stay in prayer, then having done all else, I stand on faith. Of course I do pray that my health care team is full of people with alot of patience, strength, wisdom and if you know me at all I pray for God and a little chocolate.

Its been a while now, four years since the first of those surgeries and other than one year of peace, have been fighting illness unrelenting. I have also been fighting to find me again. sometimes it's easier than others.  There is alot left for me to do but that's ok. Thats the stuff of life. I am bolder now than ever before. I am stronger now than any other time. I am braver now, than I ever thought I could be. As for my beautiful boy. He is thriving, and about to be a senior in high school. A little treat, one of the next posts will be written by him from his point of view. So we have that to look forward to. In the mean time, I will continue to work on my book, and getting healthy. Moving on...

Support isnt always supportive...

Hello there!

I have been spending the last few weeks recovering from a serious case of bronchitis and pleurisy. not fun.

So lets catch up.

In my second to last post I talked about how it felt to go through the first days of diagnosis, and there are a few things I need to mention. I have an amazing Doctor. He is caring and compassionate, and I believe, he is the tool God used to save my life multiple times. I am not an easy patient, I get nervous and frightened and at times my fear overrides my ability to reason, and take action. In those times he is able to pull out of me how I feel about my treatment plan. So, when I second guess my decision later I am able to rationally look back and find renewed confidence in the treatments we use. I am blessed that I have a great support system now. I have also empowered myself with knowledge. The bad days aren't as bad as they used to be. When I am sick I am reminded of all the people who were there for me and helped me avoid the mine field of "destructive support" verses "real support".

Today has been a long day for me, not feeling well and recovering from a prolonged infection it feels like it did being stuck in a hospital bed for so many months. These are the times where I feel most confident that if I can help even one person to understand treatment options and early detection and screening it will be worth it. every shallow breath, every tear, every scar. In those early days, women were there for me while I was at the clinic. Women who had been where I was, where I am. But finding support must be done with caution. We are hearing more and more about a small group of survivors, and those caregivers who are left behind, who for whatever reason want to tell the scariest  and most upsetting stories to current patients. I call this 'destructive support"

Why is this scary to me? There are many patients who are terrified of treatment and recovery because of horror stories they hear from others. I have had the same experience. When I'm out, wearing a scarf or with my head exposed, people want to talk to me. They tell me there stories, sometimes very tearfully. Sometimes it's wonderful and I am glad that they felt comfortable talking to me. I feel like we both leave a little lighter than we were. When they approach me, they talk about lost love ones and the upset they have endured. I wonder sometimes, if they received the "real support" they needed during a time of intense strain or grief. Sometimes though it's uglier. When new patients begin the process of treatment and recovery, they need lifted up, and so do their families. The last thing they need or want is to hear horror stories.  "My aunt died from that, she was in so much pain we just had to let her go". To many times they reach out for support only to feel trapped in a group with people who have an arsenal filled with scary stories. Support groups are out there, for patients and caregivers, but if you attend and find yourself on the end of everyone else's horror stories, feel free to excuse yourself and find a support group that focuses on "support".  Take time to empower yourself in the midst of your own nightmare.

Where in the world is this blog going?

Well.

This last week I have been thinking a lot about what direction to take this blog, and by extension my book. I was deciding whether this, my story, is better fitted to generic informative or emotional narrative. Much of what I have talked about over the last four years has been how my life can be used as a warning for other people. Men and women alike.I talk about little lessons I learned from cancer, my body, and what I did wrong and how I hope others do better. Here's the thing though, I have learned more about life, love, parenting, being a friend, a child, a patient and so much more. Almost always I hear, "Wow, you're so young", but the thing is, I wish I had learned all of this twenty years ago.

At least, in terms of this little journey I'm on, I think there has been much more to learn than just how to survive cancer. How to Survive cancer is there, but also how to survive mental health issues, going through a divorce during the midst of a hurricane, parenting a child who has already been through far more than any child should go through, and I think, how to lose it all and still come out on top!  Knowing at the end of the day, that whatever I say or whatever I write will be out there forever.  My son will one day read this and know about all the turmoil but how it made me stronger. Also how it made him stronger too. But I also want him to know that it took it's toll on us. I define Us as my whole family flinging around inside the hurricane with he and I as close to the eye as you can be without being in the calm. I have spent a lot of time during this last week brainstorming what will this be, a memoir? something more educational in value, and what I came up with is rather simplistic.

I'm just going to tell my story, with all the emotion that comes with it and the knowledge I have gained. Take from it what you like. Life has a funny way of changing us. Like when I was decorating the house that Christmas four years ago I never imagined I would spend the entire day of Christmas laying on my house all alone while my ex (then current) husband took our son to the neighbors house. I refused to say how much it bothered me or that I thought he was being terribly selfish. Now I would speak up and say how hurt I am, how alone I feel and how it would stay with me for years that feeling of being alone. Since then, irony, which set up shop in my life many years ago, would show that I  have become much stronger as a result of that day. So that when I got sick again in the years that followed, It didn't hurt as much, being alone while being given bad news time after time. I was much more equipped for the ugliness of life.

SO over the coming weeks, and months, I will be writing about the past, present and future all in a predefined space. So lets buckle up and enjoy the ride. who knows maybe we will all learn something in the process.