Dating and being crazy...

I was asked out on a few dates recently. For crying out loud stop laughing, it's possible. Dating in my situation is slightly challenging and I'll tell you why. First of all I am forty years old and have only a little hair, (but rocking wigs!). Alright fine, no hair. The hair will grow back but with the cancer and all that that implies, it can be difficult. Second, I have a mild form of bipolar disorder called hypo mania, if the cancer doesn't send them running for the hills that usually does it. And third, I am menopausal, (Thanks cancer!), and have been since I was thirty six. So I have to figure out what time and how do you spring any of this on a man. I believe in being upfront and honest. Sometimes it works out well and others...well lets just say I have seen people run as fast as the road runner, and yes the cloud of dust is visible. OK now I am cracking me up, so let's all smile and enjoy the ride. Today I just laugh at how people react to my situation. It wasn't always that way.

After my initial diagnosis the shock of cancer left me largly unable to think about all the consequences. "let me live, let me live".  that's all I cared about. So, at first losing my fertility wasn't a shock. In the hospital, though, I was suddenly became very aware that I would not be having anymore children. My life long dream to have a house full of children was gone in a moment. God has blessed with me with a few "adopted kids" so I am a grateful mother. However, I forgot who I was and didn't ask questions. My Oncologist said, " so what are we gonna do?" I responded get it out! You're the Dr. why are you asking me? Seriously folks, I am an intelligent woman but when panic set in my brain turned off. I was genuinely traumatized more than one might expect for the situation. Some days I still am. Before I knew it I woke up post op and was so grateful to be alive that I pushed everything else to the back of my head and hoped for the best. Lets just say at this point if you are a mother and have ever had to bath a dog to get peanut butter of his back from a child deciding to frost him, you know about compartmentalization. I am an all American pro at it!! But I have to tell men and friends about the cancer, rarely, do I tell them how deeply it affected me. That can come later right? I'll let you know what I find out.

And then there was bi polar disorder, and PTSD, Post traumatic stress disorder. yea! I am treated and well managed. My form of bi polar is called hypo mania. Very common for these types of disorders to float to the service when a serious trauma  is happening. See I listen to the therapist, and Psychiatrist. OK I call them shrinkydinks , no insult intended really. They have helped me through some of the most trying times. now what I go through is simple, I get extreme energy and can't turn my brain off. I'm not wearing aluminum foil hats or anything extreme. My house gets really clean in the middle of the night. A councelor once told me it is about perspective. The best time to clean out a refrigerator. None the less you say bi polar and some folks ( not all by any means) get spooked. I get it, really.

Third, I am menopausal, I think this needs no further explanation. except to say can some please for all that is good and Holy turn the air conditioner down. It's hot in here!!

My point is that it is going to take a special kind of man do accept and deal with all these things. I remain hopeful. and until I meet him, I will make sure I have cab fare, and money to pay the check just in case "the Date" bolts on me. I love my life and you know what, I wouldn't change one day, one minute, one second. It is what has built me to be stronger, braver, and smarter than I ever was before! Would I refer some things hadn't happened? Of course, it just is not the life I was given. So get out there and love someone, your wife or husband, a friend who needs a hug, your children, just love someone, Even if they cant find a spot in their heart for you, remember, loving isn't for keeping it's for sharing, even if my teenage son refuses to clean his room and is on his phone all day, Like all other things in my life it's been worth every moment.

God and Chocolate

This week has forced me to face a few emotional trials in my life.  Like I almost always do when I am feeling unsure or concerned even let down and depressed, I pray. I pray , then I crank up the Christian music, and the hunt begins.  Tonight it actually involved several people and finally a great friend came to my aid. During these breakdowns, which are rare, I need Chocolate. I mean I NEED Chocolate. ( BTW thanks Jen for saving me tonight!) The problem is I am trying very hard to keep sweets out of the house, so in my time of need, there was something of a hunt. After it all settled and I had my music and chocolate I had one of those memories. The ones where the smells and sounds take you back to another place and time. Into the wilderness, where the darkness first found you, For me I smell the hand sanitizer and alcohol, mixed with mascara and the dust from Kleenex.

The day I was told about the cancer I went straight to my WOW CD, a box of Kleenex, and chocolate. I didn't want to talk to people, or be touched. I just wanted to get through these first hours and those are the smells. For the record, I am unable to sit next to a box of Kleenex without feeling that day all over. That Monday. Sitting in the office, the blackness, then a moment in the van on the way home, like snippets of time. They are not fluid memories, Being forced to tell neighbors long before I was prepared, Snippets of time. minutes inside of moments. I didn't want to tell people because then it would be real.

But my then husband, seeking his own comfort, immediately climbed out of the car and made a beeline for a neighbor. In all honestly that was the first time in my journey I felt so completely betrayed. I know he needed comfort though. Next rushing to tell my son, Again feeling betrayed. I needed a moment. The world spinning out of control. Feeling like I was tilted on my axis. But there is was on the coffee table in the little Walgreen's bag. God and Chocolate. I had purchased some of the elixir all women know well, and a book of daily devotionals. I had to get out of my head and this was how I would do it. The music fit perfectly, some gave me strength and some made me cry. Some of the devotional did the same thing. But I allowed myself to go there privately. Not in public, though, never in public. I allowed my son see me to grieve so he knew it was OK to feel bad, but only to a point. I shut down.

Everyone seemed to know, I got endless pity. Oh the pity. If you ever want to feel utterly useless and without value, get a dose of pity. Why did the cashier need to know that I had cancer? The woman at the Dress shop? Everyone. I never had a choice, I just wanted to be invisible. I started walking and then running,on the treadmill music blasting, all the while eating my chocolate. It was a strange little peace I got. For those moments I was the toughest chick in town. I could handle anything. Seriously try it one day. God and Chocolate.

Which brings me back to tonight. I can still not sit around a box of Kleenex, I can still smell the dust! The music is fading the milk duds have seen their last, and I am feeling strong. My prayers as always have been ever heard. The well is never really dry is it? With prayer and and faith, some loud worship music, and here I am A warrior continuing her fight. A single mother who was feeling alone in the world. Crying over something  I wont remember next month. In some ways alone , but in many others I am surrounded by friends and family.  Oh , and don't forget , a little God and Chocolate.

It's not about me...

This Post is Inspired by a Dear friend undergoing her own fight for life. She is a hero to so many and a true light in this world. I will not use her name right now without her permission, but I hope to introduce her to you one day. To her, All my love this morning, Sweet Friend!

This Morning I was sitting here in my big overstuffed comfy chair that I bought at the height of my illness so I could curl up in comfort and be around my family without being jarred or bumped on accident. Just being touched was more than I could bear. The very things I loved most about my family life, I retreated from. I have always loved the small spaces in a home. The spots where you squeeze past one another and constantly find yourself crowded. One of my favorite songs even after all these years is Love Grows Best in Little Houses , by Doug Stone. I am claustrophobic but still enjoy the coziness of small spaces. Just not closed in spaces. Not the point...

So when I  felt myself pulling into the safety of my own" little house" and the comfort of my inviting chair I had to give some thought to what brought me here.  Here, being the time I spend traveling as an advocate and now a writer. Am I writing as a way to heal my body and soul? Not really. It may help though. I hold things very close to my heart and recount with some distance my experiences, so I don't have to think about it. I remember back to days where I was speaking in front of large crowds and telling my story in both small groups and also huge venues. Telling in intimate detail about my cancer and all that it robbed me of.  I am much better in front of a large group.

It was always because I never wanted any other girl, to be "that girl" you know the one, she avoided screenings out of fear, she lived in extreme pain and breathed through it because that's what a woman does. You know her, the one we whisper about at family reunions,
     "shh, let's not bring up so and so's pregnancy, you know she can't have babies... if only she had gone to the Doctor. " or " she was so young , why didn't she just get checked, I guess we'll never know..."  I was telling my story, jumping up and down, shouting  to anyone who would listen. For a privae person, a whole lot of people know about my vagina.

It just wasn't about me, it never was. It was about my son, about my parents, and my brothers. It was about the other mothers who would have to call her children and parents and tell them those words...I have cancer. I say I a lot, normally a bad thing, but in this case I am willing to be the before and the after. The example of what not to do. but in order to do that I need to tell my whole story. The good the bad and the ugly. I just never want another woman to lose all that she holds dear, or a man lose his reproductive or sexual function because a Dr. walks in and walks out. or more likely, because they never went.  I'm told all the time how brave or strong or tough I am. But you see, it's not about me. This fight was never about me. It was really about you, reading this blog.

Voiceless Agony

I remember once,  before cancer, lying on a bed in an ER where I had been brought for some extreme symptoms including intense pain. I will not at anytime during my writings share things that some may find hard to swallow due to personal sensitivity.  So I will use terms like extreme symptoms in their place. Anyway, as I lay there writhing in pain and refusing the pain medication so they wouldn't write me off asa whiner or drug shopper, (I lived at the time in Florida where this is a real problem) a woman came in the room. It was a moment that I will not forget as long as I live. She was in her all too peppy scrubs and so was not right away identified as the Dr. she purported herself to be. She assured me that all of my symptoms stemmed from one simple cause. I was Fat. I was overweight, no argument, but that had nothing to do with my symptoms at that moment.

I was becoming frustrated because nothing I did would stop the gaining of weight, including refusing to eat. She did the most brutal exam I had experienced to date (or even since). She was a snobbish woman and treated me as though I was no better than an animal. She never ordered an ultrasound, never did testing beyond my blood sugar, even when I challenged her. At that time my son was just eleven years old. I worried about anything that could take me away from him. I still am. I knew it was more than being fat or, as she insinuated, absolutely gluttonous. I knew it in my gut. But I sat silently. I was so off put that after she shot down my challenging questions I went quiet. It is worth noting at this point that based on the growth and development of my cancer and its cell type I already had cancer for some time. A simple examination and ultrasound would have diagnosed my cancer with in a few days. The type of cancer that I have commonly exists with a normal pap smear. It isn't and HPV based cancer, so that wouldn't have helped me. I have learned that protocol would have been to do an ultrasound. I could be bitter. I could be angry. It wouldn't change anything and would only hurt me. By the time I learned exactly how many opportunities were missed for diagnosis, my heart did break a little. None the less, I clammed up.
                                                                       
The problem was, I was so hurt and upset after having been told that the only medication I needed was help to put a fork down. Her words. I never fought back. In fact I ate almost nothing and could barely move. Stairs proved impossible.  I understood that I was diagnosed with MS ( as I have said before incorrectly)but the she wasn't interested in the treatment I was or was not getting. Simply that I was fat and she believed I was diabetic. Did she listen to me? No. Instead, she did raise her voice about my refusal to accept the obvious. I would not be diagnosed as a diabetic until about 3 years later after my cancer was into treatment, After I had gained even more weight and became even more immobile.  I was moo-ed at in public and humiliated at each turn in reaching out for help. Which helped slow down my diagnosis another year. I found it hard to trust the medical community. I came to them for help and instead was reprimanded and chided. I am easily cooperative and do my best to keep accurate medical records and a complete family history at my Primary Care Doctors' office. Her cruelty very nearly killed me.

I am not saying that to get your sympathy, this just happens to be my story. I want to say that throughout the ordeal that went on so long, I was in the fight, no matter how often the people who could have helped me tried to push me out. Lesson number one- God gave you a voice, use it! He gave us instincts, so we need to listen to them. Trust our guts and then seek the advice of people who should know better, but don't be afraid to ask more questions, get second opinions, and fight for our bodies, for our lives. The Doctor on the other side of that stethoscope is human, All humans have bad days and make mistakes. One life has any more or less value than another. What is done with the life maybe, but not the life. If only...

The little moral of today's entry is this. That day in the hospital, while I was being called fat and told I ate too much and my blood sugar was to blame...my A1C which monitors the average blood sugars was a well in the normal range as it had been for months and months. I had early stage renal failure and they assumed it was diabetic related. It was not. It was related to the medications that I had been kept on for years to keep other symptoms at bay. I knew this in my bones. I Spoke to friends and family about it, but never argued with the Doctor about it after that first day,not once. Instead,  I waited until they left the room and cried. It very nearly cost me my life, and it did cost me my fertility.

 

To end on a high note or irony at the very least, my uncle, who upon reading this will know exactly to whom I am referring, used to call me ratchetjaw...ask around if you don't know what that means...its pretty funny. ( This picture is me during the ratchet jaw years, lol)

In the beggining...

     On December 7, 2008 I had my own little day that would live in infamy. My worst fears were realized and a substantial tumor presented itself. The ER docs did the best they could to hide their knowing expressions, but I saw the looks and I knew in my heart it was cancer. I don't know how except that It was in my heart. I waited for my Dr. to call me with the results and on a Friday she said come on in. its no big deal just a follow up. So I went. it was 8 days after the er visit. I was sitting in a chair when she walked in to the unusually stark white room. I was shaking already. My body knew. My heart knew. She started her sentence with something like you have adenocarcinoma of unknown origin.
Cancer. Fantastic! For this post, I'm going to skeleton version of events leading t this day of mine. but i will expand in the future.

     This is where I need to take you back for a little while in my world to 12 almost 13 years prior. I lived in another state at the time and had ongoing health problems starting slightly before my pregnancy but escalating from then on. I was tested and prodded and poked and was treated for a number of ailments. I was diagnosed by one Dr. as having Epstein Barr's Syndrome, only to find out during a second opinion that no that couldn't be it. I was sent to clinic after clinic and hospital after hospital. Where I was diagnosed and began being treated for Multiple Sclerosis. I underwent the treatment and "episodes" for about 5 years I believe. Maybe 6 but none the less far too long. I asked for a Ct scan and was denied, I went to and endocrinologist who immediately had me start seeing a gynecologist oncologist, who found the Atypical Hyperplasia.(precancerous nearing a cancerous state) he followed me regularly removing these cells and telling me to make decisions about future children, since I might need to move on to a more serious procedure. So I shut my mouth. WHAT WAS I THINKING? Hindsight is 20/20 and now I understand I should have demanded more information more test. Endometrial Cancer is one cancer that doest show up in normal testing until its too late to really preserve fertility, even life.

     Back to diagnosis, I now know that all the treatments I underwent in fact slowed the growth of my cancer but there it had been the whole time, like a time bomb in my uterus waiting to go off. slowly spreading and growing. So how can I be mad. How can I be frustrated, but here I was filled with anger and resentment. What I was dealing with was Endometriod Adenocarcenoma. A disease that usually presents between the ages of 54 and 63. A menopausal cancer. I was 36 at my diagnosis. I had been trying to have more children since my son was just a year old. Now that dream was gone. I still kept my mouth shut and let the the  Gynecologic oncologist take the lead, I don't think i spoke a word during the first consult with Oy GYNONC. I was shaking too hard. He is a wonderful Dr. and looking back it would not matter for me , however, I think of all those women who would have benefited from asking more questions or looking into other treatment options. this would roll around in my head constantly while I started researching to find out where I went wrong.

     Now I was determined to find out the unknown of my story and to help other women to find the truth of theirs. To have the strength to ask questions and demand options, to be brave and save their lives on their terms. So I began a new chapter of my live. Advocate, Lobbyist, public speaker, and a friend to both men and women who suffered from reproductive cancers. It has been four years since I started this long and winding road from actual diagnosis, to remission. As I move forward I will talk about the pre-cancerous days and how they affect my life now, and where I go from here. I hope you will stay with me through this journey, learn and share the information and know that the biggest part of recovery, is on occasion, opening your mouth and demanding better.