Taking a look back

Looking back at the last couple posts, I was on a surgery post, then I had to get mad at my unique position. I guess I should finish the surgical post. 


It was amazing at how many people were at the hospital to have out patient surgery. It was so stream lined. Get in line. Wait. Move to the appointed spot. Wait for the person at the desk. Answer a few questions. Stick out your arm for your arm band. Have a seat. Wait for your name to be called. Excruciating migraine. 


Every person I encountered asked me my name and what I was there for. Security procedure. Don't want to have the wrong surgery. Would the wrong one have been so bad? That thought did cross my mind a time or two. Wonder what wrong surgery I could have had that day? Maybe just my appendix? Maybe it would have been something worse than my original surgery.


The first thing I have to do is take off all, yes all, of my clothes. Given some gray socks to put back on and a gown. Yay. Insert eyeball roll here. Get in the bed, cover my head with the sheet and blanket. 




So, into the pre-op arena. Yes, it was like an arena. It was horse shoe shaped, at the opening of the horse shoe is the lab area. Everyone has to have blood work done. Each patient is separated from the other by curtains, just like in a regular room. Each little cubicle has its own lights, monitoring equipment, bed, chair and so on. My nurse, a male, came in and I was laying there with the covers over my head to block out the light. He asks my name and I tell him, my husband tells him I have a sever migraine. The nurse commiserates with me, he gets them, too. As soon as my blood work is done, he promises me that I will have meds to make it go away. 


When was my last menstrual cycle? Did you take anything for the migraine? Have you had anything to drink? To eat? I can't list all the questions, but it seemed endless. 


The anesthesiologist seemed sort of peeved that I had a migraine. Was it my choice to have the damned thing? Hell no!! No, I did not take anything! It was the first one I had had in a long time. No allergies.


The doctor comes in. Nice to meet my husband.  I tell her I would rather not have seen her again this way. She understands, but my decision is for the best. We agree. The next time she sees me it will be in the operating room.


I am hooked up to a heart monitor by another nurse, this one a female. Beeps and buzzers and all sorts of noises, not just from me but from the others around me.


When can I have meds to make the migraine go away? As soon as all my blood work is back. I can hear the first nurse asking the lab if my blood work is done, she is in pain, get it done. He does this more than once. The needle and med, versed, is waiting for me at the end of my bed on the tray. My blood pressure is sky high. No wonder, I am stressed, dehydrated, and in pain. Not to worry, it's understandable. 


Finally, blood work is done and here comes the first nurse. I have an i.v. needle inserted in my wrist, probably my left, I don't remember for sure. This was done shortly after I went into the pre op staging area. He lifts the needle off the table and says I will feel better quickly. All I really remember is my head swimming around. My husband tells me I asked the nurse if it was o.k. that my head was swimming, but I don't really remember doing this. 


I have a vague memory of being taken to the operating room. Also another vague memory of being there and being transferred from one bed to the other, but even shortly after surgery I wasn't sure if I really remembered it it "placed" the memory there--I was told what would happen once I was in the operating room, so I am not sure if I really remember what happened or not. 


The next thing I know is that I am uncomfortable, there is a nurse around me, I ask the following three questions: Am I done, what time is it, and when can I go home?


I remember being really thirsty and what am I given? Lorna Doone cookies, saltines, and graham crackers. You have got to be fucking kidding me! Here I am, have not had a drop of hydration since the night prior and you are giving me that shit! All I wanted and asked for was lots of water, which I was promptly brought. Skip the damned crackers and cookies! Not sure now much I drank, though. 


My husband is there now. Not really sure what he said, it's been over a year now. He probably asked how I felt. I remember trying to sit up--that didn't work out too well. I remember trying to get dressed, had to have help, of course. Stupid elastic waist pants, a shirt, why in the world did I choose to take shoes that needed tied? Very particular about how tight or loose my shoes are tied. 


Anyway, the nurse told me it was 9:30, yes, I was done, and I could go home any time I felt up to it. Believe you me, I was wanting to be out of there as soon as I could. Oh wait, I also wanted to make it to McDonald's before breakfast was over. I failed to make it, only by a few minutes, though. 


Headed to Target to get my prescription pain killer, Vicodin. Had my husband bring out the electric cart--damn thing was almost dead. Went to the bathroom. For the life of me, I did not want to go to the bathroom in the hospital, just wanted the hell out of there. I remember it being particularly funny that I was having to be helped to the bathroom, in the bathroom, getting my stupid elastic waist pants back up, headed back  out to the Vue. He brought out my prescription. 


Honestly, I don't remember much of the ride home. I do remember, however, pulling into the County Market parking lot and all I wanted was tapioca pudding and propel. Most of my co workers asked him how I was doing. It seemed like it took him a while to get what I wanted. 


Came home and tried to eat a bowl of soup. Drank the propel. Ate the pudding. Fortunately, I was told that it would be hard to eat most anything after surgery due to the fact that some of the drugs that get used during surgery make it difficult to produce saliva for a while. Damned if that wasn't what happened. I had a bowl of Italian Wedding soup with mini meatballs. All I could manage to get down was the broth. The rest of it seemed to stick in my throat. Thank goodness for tapioca pudding!!

Happy Anniversary *eyeball roll*

It all started about two years ago, my journey into menopause.

Well, I guess technically, it all started with my grandmother, back in the '70's when she got her diagnosis, but my personal journey started two years ago.

I originally got the BRCA testing to make my mom shut up, to make her quit harping on me to find out if I had a predisposition to ovarian cancer. I never gave a thought or much of a thought to what I would do with the results. Do the tests, find out, have it taken care of, go on with my life.

Um, did I mention this involves major surgery? That you go into instant menopause? That you have all the "wonderful" things associated with menopause? *insert eyeball roll here*

I had my testing, go the results back the week we were heading to Canada for the very first time with our drag car.

I do all the shopping for food, fixing all the food, loading the trailer with all our personal clothes, all the food....the list seems to go on..... and on... and on.....and not only that, I have to deal with finding out how to cross the border into and out of Canada, what items we can have, how much of these items, can I take the dog, what papers does she have to have, what kind of food I can take or not take--did you  know you cannot take root vegetables into Canada from the U.S.? I do! Did you know you have to have a manifest of all your items? I do.

There are all sorts of rules and regulations going into and out of Canada from the States.

Doing this trip, however, is easier in some ways than regular events in the States. At least going into Canada everything I take has to either be in original containers or labeled with USDA stamps--product of USA.
So, most of what I take is already prepared--BBQ from Sam's Club, heat and eat type things, salads in sealed containers from the grocery stores, veggies already chopped in sealed containers, and so on. I don't fix anything ahead of time, just shop, load and go.

Oh, and on the Tuesday or Wednesday before we leave, I get this nice letter in the mail, in a nutshell, it tells me I am BRCA 2  positive. I can't stop to decipher what this means beyond I am at very high risk for ovarian cancer. Time to leave for Canada, gotta go, the semi waits for no one.

I tell my step daughter by text message, who else am I going to tell? I don't even remember telling my mom that week. I can't tell the guys--my husband knows, but his mind is on racing--can't tell either of my sons or the crew member that is with us--I text my step daughter. I had to spill my guts to someone.

Canada crossing goes fine, worried for nothing.

With our racing association, they always have a minister, her name is Renee. I am walking back from my shower or pee break or whatever the reason and I stop to talk to her, I spill my guts and bawl my eyes out. She was a great comfort and gave me some wise words to hold in my heart, she tells me that the diagnosis is a "gift wrapped in trash". It's great that I have the scientific knowledge to find out what the future holds for me, but it's trash that I have the diagnosis. What am I going to do? Well, Renee, I guess I am going to have my ovaries removed to hopefully prevent this disease from taking over my life.

July 2010 was my news, it takes me until January to have an appointment with a surgeon, March 2011 to have surgery. I had a breast MRI in November, maybe December of 2010, along with a pelvic ultrasound and trans vaginal ultrasound. I have touched on those in a previous post, no need to go into it here.

It's hard to believe it's been two years since my original BRCA diagnosis. I didn't even realize it until we were not heading to Canada this year and some of our other racing friends are. Sort of a bittersweet anniversary--two years from my original diagnosis and on top of that we are not racing this coming weekend and friend are. Sweet I have control over my life, over what fate has handed me.

I know some of this is a repeat of what I have already written down, I needed to write it again, for my sanity. I need to relive some of this to keep clear in my mind what has been done, what I have done, what my life was like "before" and what my life is like "after". I don't want my journey to be in vain, I want others to learn from this, that they have to take control over their lives, ask questions, take the initiative in their health care.

Am I home free from a cancer diagnosis? Hell no! Do I have to be pro active in my care? Hell yes!!

So, happy BRCA 2 anniversary to me *eyeball roll here*

Happy rest of my life, I sure as hell hope so!!

Out of order

Yeah, I know I was posting about surgery, but today I just don't feel like facing it. 


I don't know what it is~~is it the fact I am almost at my 25th wedding anniversary, is it the fact I have to pack lube in my carry on bags, is it the fact that some days I really hate the fact o.c. runs in my family? The list could go on, but today it's just weighing heavily on my mind. 


The fact that what I thought I was going to save on feminine supplies and now I have to spend that money on waxing, depilatories, and moisturizers and I mean moisturizers for everything!! You can read all the books you want, but until it is your body and everything needs moisturized, you just really stick your head in the sand and say "not me". Well, I am here to tell you, "yes, you."
And yes, it sucks!!


Am I angry? You bet your bottom dollar I am!! Angry at the fact o.c. took my grandmother, tried to take my mom, that I am high risk, angry I had to enter menopause at 45, angry that now what does not grow on my legs now grows on my face!! 


This is not my fate, it is my journey. Don't get me wrong, I would make this same decision again. I can't exactly put it into words~~let me say this~~I am in a unique group of people who can call themselves "Previvors" We are definitely a unique group of people. We have not been through chemo or radiation, we have not heard the doctors tell us we have cancer. What we have heard is the doctors tell us we are high risk for certain cancers. That gives us our own unique problems. What do we do with the test results? Who do we have to chat with and share our problems with? Can we chat with survivors and then feel guilty that we are o.k., that we didn't have to go through chemo or a cancer diagnosis.


Take for example just a simple call to the doctor~~I need to make an appointment for a transvaginal ultrasound~~you have to explain not only to the person with whom you make your appointment that you don't have a "diagnosis" that your diagnosis is "high risk for o.c.", then you explain to the tech that you don't have cancer, that  you are high risk. You just feel like pinning a post it to your forehead saying: "I do not have a cancer diagnosis, I am high risk, but still have to take all the same precautions." 


People tell me I am brave for doing what I did--and I think I addressed this in another post--I am not brave, just scared that I would get o.c. I am still at risk for developing it and breast cancer. 


Hell, yes, I am still angry and for some reason it's weighing heavily on my mind today, I don't have a support group, I need to make one for myself. I guess Facebook here I come to create my own page for o.c. previvor. 

Surgery

I can still tell, over a year later, what all happened on the day of surgery, even the night before. Can't tell you what I had to eat, not the small details, but my over all feelings. One of impending doom, fright, wonder what it will be like to not be "whole" any more.

Morning of surgery, impending doom and hopelessness. Oh, and the excruciating migraine and the need to also shit my brains out. Did I mention I had to shower with anti bacterial soap? 

It's amazing what our minds will focus on to keep from dealing with reality. Other than the need to sit on the toilet and leave a giant crap in the toilet and the need to hurl, my mind was focusing on the fact I had to shower with anti bacterial soap. 

I had gone to my local Bath and Body Works and got some sort of Bahama Breeze or something similarly named~~if I had to do this, the least I was going to do was at least smell good. 

Standing in the shower, all I could do was cry and it was not from the pain of the migraine, it was the fact I had to use anti bacterial soap. Not the fact I was forever going to change my life, not the fact I was headed into unknown territory, not the fact menopause would start in just a few short hours~~it was the fact I had to use that damn anti bacterial soap!! I knew I was a clean person, didn't the staff know I was? The water works would not end, no matter how I tried. Was there some mourning because of what I was losing, I am sure there was, but the more I showered, the worse I cried. Even now, thinking back, writing it, putting it in black and white, the screen is hard to see through the misty eyes.

Shower, done. Sitting on the toilet, taking yet another shit, barfing again.....ugh, can my self esteem get any lower? Oh, my husband knocks at the door....."are you o.k.?" "NO, you cannot come in!!" 

Finally, the tears wiped away, the shit cleaned off, the barf cleaned off, washed down the sink, tried brushing my teeth to get the disgusting taste washed out--I head to get dressed. I don't remember what I wore, pants of some sort, a shirt, tennis shoes. 

Start to head out the door, dry heaves at this point--back to the bathroom. Head to the car, silence, what is there to say?  "If I tell you to stop the car, you will need to do it quickly."

Uh oh, "stop the car!!" yet again, dry heaves, excruciating pain of the migraine.

Hospital parking lot, find the out patient offices. 

It's all stream lined. Check in at the desk, they have your chart, your i.d. ready, answer a few questions, give them your insurance card, you're all set. Hardly took any time at all, maybe 15 minutes tops.

"Mrs. Dunn, this way, please." 

Did I say it's only just around 6:45 when the staff takes my husband and I to the out patient staging room?

Yep, it's all in what you say & how you say it

Tuesday before surgery, my mind is doing nothing but keeping itself busy~~all the "what if's, why'" and whatever else I would let it do.

I went to work, just like another normal day, although the countdown in my mind was telling me differently. I had been telling certain customers what would be going on. That I would be gone from work for four weeks. Some got the full blown explanation, some got just a short "family time".

So, I had been telling one of my co-workers that all I wanted to do was go home and put on jammies and do nothing all night long.

Later on in the day the mother of my oldest son's girlfriend comes in and we chat and at the end of the conversation she mentions that she guesses she will see me later for dinner at his house. HHMM, news to me. Now, if I hadn't mentioned it prior to now, I am not one for surprises, I have been told I need to be more flexible, that I like to have control over things. Now, in this instance I think having control is a good thing because it's the little things I can keep under control since my body and its genes are not something I can control.

I guess I got "loud" according to her and that ruined dinner plans. Huh? I am the one having surgery in  less than a week, I want to go home and do nothing but be in my jammies...... you tell me I am  having dinner at someone else's house? You know what, I do have a voice that carries, I speak my mind~~most of the time. I have lots of opinions~~stick around long enough you will hear them whether you want to or not.

So, I told her that I had fish already thawed that needed to be cooked. I guess I told her this more than once and was "loud".  I found this out after I called my husband to find out what was going on for dinner. According to him, I had ruined dinner by being "loud" with the mom. Whatever.......I really didn't appreciate being told I was having dinner somewhere else when what I really wanted was to stay at my own home. All I could do was count down the days, hours, minutes, time at work, showers I had left when I would still be "whole".

Well, the shit really hit the fan when I got home. Not only did my husband and I have it out, but I had it out with my youngest son. Yes, even after all these months, I can tell you pretty much what I said to both of them.
I won't get into it here, but suffice it to say I was out of control. In tears, fixed the dinner I had planned, didn't eat anything, laid on the couch after it was all said and done and stayed there the whole night, in my clothes, didn't ever get up, don't think I ever moved.

I really don't think my husband really had any idea how much I would change with this surgery. I finally told him the following: "imagine the surgeon cutting off your testicles, the hormones they produce you will never ever have again and those same hormones are the ones that tell your body you are a man."

Well, it did't go over as I had hoped. All he told me was that even after my surgery people would still look at me and be able to tell I am a woman. That is NOT what I was trying to tell him. I was trying to get the point across that the hormones that tell my body to become wet when I am turned on won't be there, that the hormones that protect my heart won't be there, that the hormones that keep me from getting hot flashes won't be there.

What I finally did do is send him an email with links to various sites on line that explained what menopause is, how it has an effect on  your body, what the hormones do, what estrogen tells your body to do. One even had a short video on what my surgery would be like. He is squeemash, so it didn't go over well with him. But, he did finally get the point~~that while on the outside I would be the same, the inside wouldn't be. That it's not a lube and oil change~~that it's a whole other way of living, it's a whole other way of taking care of yourself, that it's a whole new person. Well, maybe not to that extreme, but you get the point~~you just never feel the same again.

It's been 10 months and I can still tell you what I felt the week leading up to my surgery. That hardly a day goes by that I don't think about menopause, about what the choices I made then have an effect on my life now. That every six months I have a CA-125 blood test, that once a year I have a mammogram, that once a year I have a breast MRI, that every few days I have to use an artificial moisturizer in my vagina so I don't have an odor, that I need that artificial lube so that I can even walk without it being uncomfortable,  that each and every time I get intimate with my husband we have to use lubricant, that my risk for heart attacks has increased, but, in the long run, my risk for both ovarian and breast cancer have decreased. These are things you read about, but never really think about it being "you".

Would I do it over again? Most likely. Am I 100% sure? I don't know. What I do know is that having cancer would have been worse than menopause. This I can live with, cancer can kill.

So, yes, it's all in how you say it and what you say~~be careful how you choose your words, how you say them, how "loud" you might say them, and to whom you say them.

I can't go back and change things, I would not want to do that. I learned from that experience. I probably created a distance between my son and I and for that I am profoundly sorry, I tried to explain to him why I was out of control. I don't think he understood or ever will. Am I sorry for being "loud" with the mom? No. Never was, never will be. If she and others cannot understand that I needed to be in control at that moment in time, then they don't need to be included in any explanations.

So, the rest of the week was pretty uneventful after that night. I am sure there was more that went on and if I had started this then, I would have had more to say about it. Maybe I just wasn't ready to accept what I was doing, what was going to be done to me. Hell, it's taken me, what, three, four months just to get this one night down in black and white.