It's all in how you say it

There are a few things that stick out in my mind leading up to my surgery date and two of those things are in the wording.


The first: I was readying to head to do some grocery shopping so there would be easy meals to prepare--things my husband and son could do with ease and that I would like to eat. At this point, I was not sure if anyone would be helping us out. So, off I go and DH asks where I am going. So, I told him that I was going to get a few things that would be easy for him and DS to fix for the next couple weeks and he looks at me, in all seriousness and says "don't worry about us, we can do for ourselves." 


Now I know I had to have had the blankest stare on my face. I was trying really hard not to just look at him and say "What about me? I would like to eat something the next couple weeks!!"


So, I went shopping. This trip also included picking up a few things I would most likely need for my recovery period. A couple body pillows, pillow cases for those pillows, stool softener--having a bowel movement after having had my muscles cut didn't sound like fun, a few treats, panty-liners for the spotting I was told I would have, female wipes.


I also made a trip to the KY section of the store. I knew from my research that I would not have any more natural lubrication. The extent of no natural lubrication did not hit until we were together the first time after my recovery period. I know am the proud owner of a few different types of KY. More on those later.


One of the harder purchases I had to make was antibacterial soap. I was told at my surgical consultation I would need to shower in antibacterial soap the morning of my surgery. Taking a shower with antibacterial soap did not sound like fun, I guess it's not meant to be. So, I decided that if I had to use it, why not smell good?! I went to Bath and Body Works and purchased Caribbean Adventure. Sounds like a little thing, huh? There were lots of little things.


The second, it's all in how you say it was this line my DH said the same weekend--"I am just going to stay up all night on Sunday before your surgery so that when they are working on you I can just sleep."


HUH?! Working on me?! I am NOT a car going in for a tire rotation and oil change. They are taking very vital parts out of me that tell my body I am female, that make me wet when I am turned on, that keep my PH level in balance.


Once again, for whatever reason, I was able to keep my mouth shut. That is, until I called my sister in law. I told her I could not believe what her brother had said~~"while they work on me!!" I know it's a "man" thing, the way they word things, but still, it's MAJOR surgery, not an oil change!!! After my call to her, I was feeling better, but still, to this day, I will never forget what he said. I try not to hold it against him, as a matter of fact, I can look back on it with a smile.


Now we are down to the week prior to surgery. Only five more days of work, one more weekend where I will be "normal". A weeks worth of showers where I won't have scars. A weeks worth of dinners before I am not "me", where I will be "different". I spent a lot of time mad this week and it manifested itself on Tuesday prior to surgery and unfortunately, it's all in how you say was on me this time.

Uncertainty and anxiety

Well, I had the next couple months to mull over what I was going to do. In the mean time, we had to ready for the next couple IHRA Nitro Jam events, I had the usual work to do, life went on as usual, much to my chagrin.


I had my ups and downs, lots of downs. When you are facing a future without hormones, without all the parts you came into the world with, it leaves you with lots of questions.


I could find all sorts of physical questions answered, but the emotional ones were the ones I could not find the answers to, at least the emotional questions I had. 


Yeah, there have been lots of women who have had hysterectomies and oophorectomies, but I was doing this out of a choice, not because of something I already had. My own mother had been through menopause, had a total hysterectomy/oophorectomy, but when it's YOUR body, your women parts, your ovaries, your fallopian tubes, it's all very different.


I remember in January, at Palm Beach Nitro Jam I had horrible PMS and the race car did not perform as it should have, the whole body came off the chassis~~at least this time it was in one piece~~unlike the time in Richmond the prior October when it was in 100 pieces~~I had fans wanting to talk to me in Palm Beach~~I really wanted nothing to do with them. Other friends racing with us wanted to reach out to me and ask if I was o.k. after seeing my husband blow his car to kingdom come again and I was short with them. At least I had enough courage to tell them I didn't want to talk at the moment, that I would talk to them later, I had the courage to go back to them and apologize to them for being short with them. I tried to be calm and collected with the fans and failed, miserably. I was short with not only my husband, but the crew. At one point my husband tried to come into our trailer to reassure me and all I could do was to tell him he had better leave~~which he did. 


Much to the credit of the crew~~Josh, Jim, and my husband John, they did not mention what had happened until I brought it up the next day on the way home.


I didn't want my family being on egg shells because of me, but I couldn't help myself. I was on edge myself and it boiled over and had an effect on my whole life.


Off to Baton Rouge in February, still blowing up, but only the burse panels this time. 


The beginning of March rolls around and I have my last period. Ironically, the daughter of a friend started her period the same week. Cycle of life. It still continues no matter what.


March 1 I decided to go really public about what I had decided. I sent out a mass email, I posted on Facebook, I started telling my customers that I would be having surgery and why I chose instant menopause. I told them to ask away if they had any questions. I had a greater than 60% chance of developing ovarian cancer, plain and simple.


People posted their support, sent back messages, some didn't do either one. Some surprised me by their lack of support, but whatever, it wasn't their problem, it's mine. Sometimes when they hear the word "cancer" they think the worse. 


I live in a small town with a huge rumor mill. I didn't want to be on my deathbed. I wanted to get out the word that there is a way to prevent this, that when a woman goes to have her yearly exam, all they are screening for is cervical cancer. That unless you have a family history or symptoms, you will never be screened for ovarian cancer. A lot and I mean a LOT of women don't realize this. You have to ASK to have the transvaginal ultrasound and the CA-125 test. It's not part of a normal exam procedure.


Two weeks to go. Last period. Last couple weekends that I will still have all my parts that came into the world with. You keep track of all the "last" things  you are doing. You count down the showers you take, the dishes you do, the meals you cook, the days at work.


Talk about anxiety and uncertainty.


Will I still be "me"? Will I feel "hollow"? Will I feel "different"? 


Facing the future at this point was very uncertain, at least in my mind. I knew I had a future, that was a great thing. I knew I would have many more birthdays, get to see my grandson, get to see another sunset, get to see another sunrise. Facing the future without hormones, that was different. How would it affect me, my family? How would I cope? 


Renee told me a good thing that got me through some of the tougher moments, she said that these emotions are like a donkey, you can let that donkey ride you and be in control or you can ride the donkey and take control of those emotions, the choice was mine. 


Unfortunately, for me and my family, I spent a lot of time being pissed off--if I was mad, I felt, I would not cry about it. They had to walk on egg shells a lot. I tried to be in control, but felt my whole world was careening out of control. 


I have never been mad at my mom or grandmother for giving me these genes. Yeah, it's crossed my mind more than once and I know my mom feels responsible, but it's the luck of the draw, I could very well have gotten things from the other side of my family, could very well be prone to heart disease still, but for now, I know I have the genetic mutation for HBOC. 


A little less uncertainty, I know I most likely won't get ovarian cancer. Still have about a 25% chance of getting breast cancer. Those are odds I can live with, for now.

Opinions, solicited and otherwise

O.k., so I have been poked and prodded and in various states of undress for a day. I got lunch out of it with my husband~~this was the highlight of the day.

The surgeon my oncologist recommended is about half an hour from my home. I was given a couple options for appointment times, got that scheduled, then the Dr.'s office calls to do any preliminary paper work, once again. Not a problem until the nurse asks for symptoms. Once again, I have to go through the explanation I don't have symptoms, this is preventative.

I got to the OBGYN surgeon and immediately liked her. Her bedside manner is nice enough, she had a firm handshake, got immediately to the point without being abrupt. Thank God I did not have to undergo any exam at this point!!!

She gave me my options, told me what she suggested, what she would do. We chatted about it and decided the bilateral salpingo oophorectomy was the way to go. She had the lab results, the family history, what other conclusion was there? I agreed to just the oophorectomy. She suggested looking at a bilateral mastectomy. For now, I can live with the risk of breast cancer. I am very built, a 40DD. Surgery and reconstruction would be massive, not just physically, but mentally. I already agreed to let her put me into menopause, there was no way she was going to take the ta-ta's too!!!

Now to set a date. Now, you have to keep in mind we begin our racing season at the end of January. My appointment was mid-January. 

Her first suggestion, Feb. 14!! No way on God's green earth was I going to associate that holiday, even a "Hallmark" holiday like that one with having this surgery. A surgery, that for all intents and purposes, at least in my mind, would take out my "woman parts". March 14 became my surgery date.

Now, opinions differ. Among doctors, family, friends, you name it. Through all this, my mom was ramming--or so I felt--her opinion down my throat. I know she meant well, but still, it was a decision to be made between my husband and myself. She wanted me to see a specialist. A gynecological oncologist. And, on top of it all, the one she wanted me to see was probably just about four hours north of me. So, going to see him--which I wanted a female surgeon--was not all that feasible for me. It would have meant early days, late nights, and possibly even overnight to get up there and back. I was perfectly comfortable with my choices. Finally, when she talked with her Dr. about my surgery and I got the paper work telling me about this surgeon, just a print out of his practice, what he does, where he was located--general information--I had finally had it. I had to call her and tell her that what she was doing was making me really pissed off. That she had to back off and let us make our own decisions. That if I had cancer, I would probably look into see a g.o., but for now, I don't so let me make my own decision. It sound so nice here in black and white--it was much harder actually telling her. 

So, I leave the surgeon's office loaded with paperwork, insurance information I have to work on from home, phone numbers, stuff I have to do the day of surgery, all sorts of information. Still, it hasn't really sunk in what menopause will be, what it will be like, will I wake up feeling the same, will I feel hollow, will I still be "me".

You can do all sorts of research on line, but until it's you, it's all different, it's someone else's body, not yours. 

I spent a lot of time looking up BSO, menopause, sexual problems, vaginal dryness, mood changes, hormone replacement, no hormone replacement, hot flashes, night sweats.........the list seemed like doomsday some times. Trying to be informed, some times even being overwhelmed by opinions--they are just like ass-holes~~everyone has one!!!

Coming to terms

It's a hard thing to do: come to terms with the fact you test positive for a BRCA gene, but all things are possible.

It was July of 2010 when I received the test results. For whatever reason, probably just putting things off, life in general~~it was September before I went back to the oncologist. 

She scheduled me for a breast MRI and a transvaginal ultrasound. You have to go through so much before you can actually commit to surgery. What I didn't know was that I was scheduled for these things, especially the transvaginal ultrasound.

I had both of those done September 2010. 

The imaging office called to confirm my appointment~~huh? My appointment? No one told me about an appointment. Complete surprise to me. So after some talking with the nurse who called me, it got straightened out. All she wanted to do was some preliminary paper work, let me know how long I might be there, anything that could be done in advance. 




I called my oncologist just to confirm what was going on. Her usual nurse had quit and the transition had not exactly gone great and my name and what was going on had just gotten shuffled around.


One thing the nurse had a hard time understanding was that I had no symptoms, no inflammatory disease, no cancer; all I was doing was being a pre-vivor~~is that a word? Is now...


Off to the imaging office my husband and I go. I had a vague idea of what an MRI involved, but not the transvaginal ultrasound. When I get there, the receptionist says "you were supposed to be here a half hour ago" HUH? No one told me that. All I knew at that point was that I was to have a breast MRI, then I got the great *eyeball roll here* news that I was to have a transvaginal ultrasound.


In an MRI they put you on a bed, slide you into a tube that has lots of noises, give you a panic button, ear plugs, and try to put you at ease. In a breast MRI you get to lay on your stomach, they try to make you as comfortable as possible, then they pull your breasts through a couple holes~~no easy way to do that~~then you lay there for 45 minutes listening to all these clicks and clacks and pings and lots of other noises.


After a while they shoot some dye into the IV, you feel it going in and get a funky feeling everywhere and I mean everywhere!! You keep hearing the techs asking you if you are o.k., not much you can do lying there, your boobs hanging out for what you think is all the world to see, although I am sure all the tech sees are objects, nothing more.


After 45 minutes, you get up as gracefully as possible, especially with a gown that opens in the front and you go to another room. At this point, I think I was told to empty my bladder. No biggy, I can pee as great as the next person.


Off to have the ultrasound. Now, not knowing I was going to have this, I hadn't done any research about it, not talked with my mom about it. But, you lay on the bed and are handed a wand and asked to insert it into your vagina. Looks like a dildo if you ask me, but you know this one does not give any pleasure. Once again, I have to explain to the tech that I don't have any symptoms. All she is doing is preliminary work to make sure there are no signs of cancer. You have on your gown, that's it. It didn't take very long, as I remember. Just uncomfortable.


Test results will be either phoned to you, you Dr. will call you, you will get something in the mail. Probably all three, but that was last September, i don't remember for sure what it was.


When you have all this done, been in varying states of undress, been poked, prodded, scanned and a what feels like a multitude of things, you really begin to think this is for real.


Until now, it's just been checking, making sure the plumbing is working o.k., but once you get all examined, thoroughly examined, you have to come to terms with being diagnosed BRCA, HBOC predisposed to getting this cancer. 


I don't know that you ever come to terms with it, ever accept it, but you realize that surgery & menopause are much better alternatives to cancer, chemotherapy, radiation, putting your family, possibly, through months of treatments, and all the side effects that go along with it.

A gift wrapped in trash

It began, quite simply. My mother wanted me to get the BRCA testing and I did it just to shut her up and leave me alone. You guessed it, she went on about it more than once. 


You can't just walk into your Dr.'s office and say "I want the BRCA testing." I had to first make an appointment with my primary care physician~~when I went I took my mother's results with me~~to show the risk I already had. 


My primary care then referred me to an oncologist. She then requested the test to be done. 


I was thinking I would probably have to go to the University of Illinois Medical department to have this done. Fortunately for me, I was able to have the blood drawn at my local hospital. 


There are a couple BRCA genes and right now, I don't even remember which one or comprehensive or whatever I was tested for.


Fill out a little paperwork, draw your blood, send it off, wait for the results.


So, I waited.


Don't remember it taking all that long for the results to come back.


The day after I got the results, we were headed to Grand Bend, Ontario Canada to race with IHRA Nitro Jam~~hence the name nitrogypsy I have.


Imagine if you will~~you have to inventory your whole rig~~top to bottom, side to side; the dog has to have her paperwork, you have to have your paperwork, your meat has to say "product of USA"; you don't know if your rig will be inspected once you get to Canada; you make sure your crew has all their paperwork~~it's your first time into Canada. And then on top of it, you get these positive results that say you are at high risk for ovarian and breast cancer. HBOC~~hereditary breast/ovarian cancer. 


Needless to say, it was a STRESSFUL weekend!!!!


Once there, I tried to immerse myself in the usual things~making sure my crew had food, making sure the dog was walked, making sure guys on other crews were fed, making sure the car was working o.k., the list can go on.......


That didn't work too well. 


Thank goodness God Speed Ministry was put in my path!! Renee has been a savior!!! She has let me cry on her shoulder, listened to me rant, rave, moan, groan and never once has she told me to put on my big girl panties!!


One morning while there, I walked past her service, it was just ending, and so I talked with her at length. This was the first time she let me cry on her shoulder. She just let me let it all out. 


She said something that I have told over and over "it was a gift wrapped in trash." Boy, did she ever hit the nail on the head with that one!! Just because it was crappy news, just because there was something I could do, just because  the medical community had the knowledge to administer this test~~didn't make it any easier to hear. Good new wrapped in trash.


Medical knowledge has come so far~~it's great that we can find a way to predict what might happen. In my case, it wasn't if it was going to happen, it was when. I could not go through what my grandmother and my mother went through. 


Everyone seems to think I am a strong person. I have news for them, I just like to be in control of things, that does not make me strong, it just makes me controlling. I am trying to be better at letting things go. 

Backstory, pt. 2

I guess now it's time to meet my mom, Claudia. 


She and I have had our ups and downs, as any other mother/daughter relationship has down through history. 


She has been my ally, confidante, enemy, friend, and many more things through our 45 years together.


She is the one who brought me to my decision to have a BSO.


Honestly, I did it all to shut her up.


She was on the frontlines watching her mother die of this horrible disease. She knows firsthand what it's like to watch someone die. For this reason, she is one of the strongest people I know.


For some reason, I have never told her this~~I guess it's way over due.


We all moved from Maryland to Illinois between my freshman and sophomore years of high school. Personally, I am torn between it being the worst decision my parents ever made to maybe one of the best.


It wasn't know at the time that my mom was having an affair. Yep, an affair. I said it. It took me from the time she left in 1983 to a visit to her home in 1991 to finally ask her why she did this to us, our family. Some of it was her, some of it was my dad, none of it was me. And for some reason, I never felt it was my fault. I was 17 when my parents divorced and I stayed with my dad, there was never any question as to it.


She married the man she had the affair with. Still, to this day, I will never understand why she chose someone with five, yes 5 kids, who ranged in age from grade school to high school when she had one kid that was already in high school. 


She help raise these five kids, is still married to the man and I still don't like him and he knows it. I tried, believe me, I tried to like him over the years. But he is a very controlling person. I don't think he has ever been physical with her, but he sure is emotionally controlling. 


But, thanks to him, and I will never admit it to anyone, she is still alive. Granted, I feel it's only for narcissistic reasons that he nursed her through her cancer, but she is still alive. If she died, there would be no one to care for him. He is a very needy person.


When she called me to tell me she had O.C., I really can't honestly tell you what I felt. It's been over three years now since her diagnosis and chemo treatments and in the years since, she has also had breast cancer. Fighter!!


She had already gone through menopause naturally. In her surgery, they took out everything they could--fallopian tubes, ovaries, appendix and everything else she didn't need. They didn't know how far the cancer cells had grown. She was stage 3c. What that means, in general terms, is that the cancer has spread to outside the ovaries, into the stomach lining, maybe the liver, into the lymph nodes. Five year survival rate is between 20%-50%. Not really great odds if you ask me.


Now I know why every time she gets her CA125 blood test, it's a party!!! 


CA125 is an enzyme that is a marker. You can't detect O.C. just from the blood test, you need to have transvaginal ultrasounds in addition.


A woman's yearly exam does not screen for O.C., only cervical. 


My mom is a mom, grandmother, wife and many more things. In my journey here, you will get to hear much more about her.

Some backstory, pt. 1

The first entry was why I made this decision, now maybe I need to do some backstory on my life.


My grandmother, Zelda, was diagnosed with ovarian cancer when I was still very young, around seven years old. She lived about 18 months after her diagnosis. 


I don't remember being told she had cancer. I don't even remember being told she was sick. I knew she was going to see a lot of doctors and was very sick, but  I don't have any memory at all of being told she was sick and how sick she was.


She lived in Glen Daniel, West Virginia all her life, as far as I know. She was a school teacher at Fairdale Elementary School, teaching second grade, at least from my memory it was second grade. 


We lived in Maryland, very near John's Hopkins Hospital. I remember her and my grandfather visiting what seemed like very often, but you have to keep in mind I was seven, now I am 45 and looking back and sometimes our memories say one thing when it was really another.


I remember visiting her once in the hospital there. I have a vague memory of what seemed like a lot of people in a small, what was probably a visitor's room. I think she had an i.v. and a hospital gown. I don't know what I felt, but this is the vision that I have carried with me as I have grown older.


I remember later on, after the disease had ravaged her body, of her being at home to die. We would take the train from the station in Baltimore to the station in Prince, WV. I don't remember anything eventful on these train rides, but I remember taking the train. My uncle Tony, my dad's side, would pick us up or drop us off, probably another family member would share in this, but he is the one I remember. One morning, we were going back home and the train was very late, Uncle Tony stayed with my mom and I until the train came. I remember seeing the creek and not ever realized there was one until that morning~~I guess we always got on the train in the dark.


I remember her in the hospital bed with a green oxygen tank next to her; I remember it being early spring and taking daffodils to her that I had cut from the hillside where they lived. 


I don't know how many of these trips we made or even how many trips my grandmother and grandfather made from WV to MD, but I remember them. 


I remember being at my paternal grandmother's house when the call came in that my grandmother Worley had passed away. I am sure I was very upset, she was my grandmother and I loved her dearly. 


I have lots of great memories of being at her home, going with her to her school and being in her class, going to Coal Marsh Baptist Church, going to Lake Stephens every summer. 


This year marks the 100th anniversary of her birth. Wish I could remember in what month she was born, will have to get with my mother on that one. 


What I am leading up to, in a very round about way, is that I have these memories and I didn't think they made much of an impact on my life, that is until I had to confront my own diagnosis of BRCA positive and my mom getting O.C. 


Family history, our memories, what we perceive as our memories, all have an impact on what we choose, why we choose what we choose, even if we don't realize it.

Why I chose what I chose

Seems funny I would choose to name my blog Teal Ribbon and use a purple background~~fact is, I like purple better, simple and plain. 


Teal ribbon is for ovarian cancer. My grandmother had it and made it only 18 months~~give or take~~my mom had it and three years later we cheer every time her test results come back and they show negative results. I have not had cancer~~ovarian or any other for that matter. 


Last summer, summer of 2010, I had the BRCA testing and was found to be positive for the BRCA gene, right now I don't remember which one~~there are two~~but suffice it to say that the risk of cancer, both ovarian and breast was so great that I decided to have surgery. 


For my family, the decision was a "no brainer"~~we weighed the pros and cons of menopause VS. cancer and menopause won out. My surgeon told me about two surgeries I could have: the surgery I had was a prophylactic bilateral salpingo oophorectomy. The surgeon took out both of my ovaries and fallopian tubes. INSTANT menopause!! I opted not to have the second surgery she asked me about:  prophylactic bilateral mastectomy--that would have involved removing both breasts and reconstruction surgery. Prophylactic, for those who don't know, just means preventative.


Doing just the BSO took my risk of ovarian cancer down to almost something like 2%--I don't have the organs that would cause the cancer. It took my breast cancer risk down to almost 25%--a percentage I can live with, for now. 


It's kind of odd to tell people about this surgery. They tend to think hysterectomy. Well, it's kind of like a hysterectomy in reverse--the surgeons take the uterus and cervix in a hysterectomy and leave the ovaries and fallopian tubes if they can; in my case the surgeon left my uterus and cervix and took the ovaries and fallopian tubes.


Menopause.....what can I say? 


It's what I have to deal with now.


But, thankfully, not cancer.