Why I am getting a Gardasil Vaccination…

At 8:30 this morning I was getting a colposcopy.   This is something I have to have done several times a year to check for VIN and biospys any new areas that may have appeared.  I was fortunate today, no biopsies were necessary.  I have two areas affected by VIN I near the vaginal entrance, but they have not grown or gotten worse since the last checkup.  We check again in six months.

So far HPV has cost me my cervix and the majority of my minor labia.  I was 24 when they removed my cervix and uterus, 46 when they removed the minor labia.  So, why am I getting a Gardasil vaccination if I am already infected with HPV?

In a previous post I mentioned a Yahoo group I am part of called Gyn-Gals.  Some of the Gyn-Gals occasionally post interesting studies and research taking place all over the world.  We have all been following some research on a possible vaccine in the Netherlands, it is showing promise in clearing the virus, but it will not be available for some time yet.  Some of the information coming in pertains to Gardasil.  Gardasil is not meant to “cure” the HPV virii it protects against, but in some cases it does.  The boost to the immune system is allowing some to fight off the virus.

Andrew and I have discussed this many times over the last year.  It is an expensive drug, around $400, and probably not covered by our extended medical  Today I asked the gynecologist about both Cervarix and Gardasil vaccinations for someone like me.  He recommended I get the Gardasil vaccination.  Although I am almost 49 and past the age ranges usually prescribed the drug, he believes it may be effective in helping me fight the virus.  I think that if it will prevent me from facing further mutilation to my genitals, it is worth the financial cost.  Andrew agrees.

So, Monday morning at 9:30am I go see my family doctor to get the vaccine.  Hopefully I am one of the lucky ones.


You mean I could have had a puppy?

The older I get the more quirks I find out about the body I was born with.   I share some of my issues, such as Ehlers-Danlos with the rest of my family, some however are uniquely my own.

When I was 14 I had a tobogganing accident that required an ambulance, a spinal x-ray, and a few days hospital stay.  When they did the x-ray they discovered a fresh crack in a vertebrae (thus the hospital stay), a few healed cracks, and something called spinal bifida occulta affecting my fifth lumbar vertebrae.  This put a halt to my further tobogganing adventures.

At the time the spina bifida occulta was a curiosity.  In the grand scheme of things the fact that I kept dislocating knees, spraining ankles, etcetera was more important.  The spina bifida occulta did cause some interesting issues when I had to have spinal anesthetic a few years ago.  Apparently that is the preferred spot, after the anesthesiologist tried three times he complained he couldn’t get it in.  When I asked where he was trying and explained the problem he got a little pissy.  How the hell was I supposed to know where they put it?  I now know to warn them.  Anyways, it never seemed like a big deal.

What does this have to do with puppies?  I am getting there.

I also have another little spinal defect, something called a “sacral dimple”   Mine is located in the “natal cleft” also known as the top of the crack of your ass.  Some people with sacral dimples have a problem with occasional abscesses, I am one of them.  I have dealt with them every year or two for as long as I can remember.  I was never too concerned about them, just allowed them to run their course and took lots of hot baths.  In the last three months however, I have had two of them.   So I figured it was time to get it checked.   The conversation with the doctor went something like this.

Doc: ” You have a pilonidal cyst in your sacral dimple, by the way, what is the surgical scar from”

Me: ” What surgical scar?  I haven’t had surgery there that I can remember.”

Doc: “Hmmm, interesting.  It looks like a surgical scar.  Anyways, if the cysts keep occuring we are going to have to operate on it.”

Me: “Í’ll ask my mother about the scar, as for surgery I would rather not.  It sounds painful and with all my drug intolerance’s I would rather avoid it.”

So, I went home and sent my mother a text message.  She is currently in Vancouver with my grandmother.

Me: “The doctor says I have a surgical scar on my tailbone.  Weird huh?”

Mom: “That is weird.  Your grandmother is driving me crazy.”

So later I talked to her on the phone and asked her if she remembered anything.  She vaguely remembered something about a cyst or tumour being removed when I was a baby.  Keep in mind that my mother was only 17 at the time, dealing with my 18 month old brother, and a newborn me, in a time when young unwed mothers were frowned on.

So then we get to my doctor’s appointment today.

Me: “So I asked my mother about the scar.  She said they removed a cyst or a tumour from there when I was a baby.”

Doc: “Really? Did you have it when you were born?”

Me: “She can’t remember.  Just that I was very young.”

Doc: “Were you the first child?”

Me: “Nope, second, and she was only 17 when she had me.”

Doc: “I was a second child too.  There are hardly any pictures of me, the first one is the one they remember.  Give me a minute.”

He disappeared for a few minutes.  I was beginning to wonder if he forgot about me and was curled up in a corner reliving childhood trauma.

Doc: “So, I checked your medical records, you had a tail.”

Me: “I what?”

Doc: “You had a tail.  It was just tissue, no bone or anything.  They are rare, and they usually remove them for testing.”

Me: “So they cut off my tail?  I didn’t even get any say?  Why didn’t my mother know?”

Doc: “I dunno, maybe they didn’t explain it clearly.”

Me: “Does this have anything to do with the spina bifida occulta?”

Doc: “Possibley, hard to say.  The tail, spina bifida and sacral dimple are all spinal defects.”

Me: “My body hates me.”

Doc: “No it doesn’t.  You just are one of my more interesting patients.”

So, there you have it.  I had a tail and they cut it off shortly after I was born.  So then of course I had to call my mother and tell her.

Me: “So remember that cyst or tumour they removed?  It was a tail, a vestigial tail.”

Mom: “Really? Wow, I wonder why they never told me?  Hold it, you mean I could have had a puppy?”

Me: “…….”

Mom: “Well that explains why you crawled until you were almost two.”

Me: “I think that had more to do with the hip defect from the Ehlers-Danlos”

Mom: “Well, maybe.  Still that is pretty cool.”

So, I had a tail, my mother wanted a puppy, and both of us got screwed out of it by the medical establishment.  I would show you a picture, but it’s my ass.







I’m really a mermaid

My family is affected by a genetic disorder called Ehlers-Danlos Syndrome, or EDS for short. The part of my body most affected has always been my hips, knees, and feet. When I was younger I had flat, wide feet and age has just made them more so. Unfortunately, as they get wider and flatter, they also hurt. I have often told Andrew that I feel like the little mermaid from the original story, not the Disney version. One day as I was surfing blogs by other people that have EDS I came across an entry where another woman talked about feeling like the little mermaid, and dreading getting out of bed in the morning because it would hurt. I showed the entry to Andrew and this is the conversation that ensued.

Me: See, this woman feels the same way as me. Walking on knives, just like the little mermaid.

Andrew: You don’t hurt as much in water either. Didn’t you say it doesn’t hurt as much when we go to the pool?

Me:. Yes, the water makes me hurt less. Supports my weight more I guess.

Andrew. You know, I don’t think what you have is Ehlers-Danlos at all.

Me: Oh really??? What is it then?

Andrew: You actually have Adaptive Mermaid Syndrome. Your family must have once been mermaids. Now that you are on land your body has trouble adapting.

Me: So, I am actually a mermaid then?

Andrew: Yep, and you have AMS, not EDS.

So there you have it. Once upon a time my family lived in the ocean as mermaids. Apparently I need to get back to my roots…

Cancer Support

I am writing this post because of a conversation Andrew and I had.  He was telling me that he was at a meeting where one of the discussions was about supporting cancer patients.  He mentioned my own struggle to find support and the wealth of information available online, if you know where to look.  None of them had heard of sites like Cancer Buddies Network or Gyn-Gals.  Most, in fact, hadn’t even considered that the Internet might be a good source of, not just information, but support for someone dealing with medical issues. I found both groups helpful, but due to the rarity of my specific type of cancer Gyn-Gals became a major resource for me.  It still is.

In February of 2009 I went to Vancouver to have a prolapse repair done.  Due to the fact I have Ehlers-Danlos Syndrome, and the extent of the prolapse, I opted to have the surgery performed in Vancouver by a urogynecologist.

While doing the surgery Dr. Wilkie noticed lesions on my minor labia and biopsied a section. A week after having my prolapse repair done I found out I had HPV related VIN III. VIN III is also called “squamous cell carcinoma in situ”. I had cancer of the vulva. I was devastated and desperate for information. The BC Cancer Agency was amazing and sent me everthything they could find on vulvar cancer,but none of the information I was finding told me what I needed to know. What was going to happen when they removed the affected area? Was I still going to be able to have sex? Would I still be desireable? How painful would it be? Then I found Gyn-Gals.

Gyn-Gals is a Yahoo Group for women who have had, or are suffering from a variety of gynecological conditions. Every woman on the list is affected in some way. There have a wealth of information on what to expect, after care, helpful products, everything you might need. Most importantly, they also provide understanding and support.

As I continue my own journey with HPV related VIN they are always there for me. I know that whether I need to have a pity party, or find out the latest treatments and possible cures, that I have a group of woment that will support me. So if you are dealing with a gynecological cancer or condition, or know someone who is, please keep them in mind. If you are dealing with cancer of any type you might want to check out Cancer Buddies Network.

You don’t have to go through it alone.

1 Percenter

So, you might be wondering why I called myself a 1 percenter in the Highway of Deers post, or not. Either way you are about to find out. 🙂

– I can’t use hormone based birth control or hormone replace. It makes me very ill, among other things. Apparently only 1 percent of women can’t use hormone based birth control.

– I have a problem with opioid pain killers. I don’t metabolize them properly. The last time I had an opioid I went into respiratory arrest. Apparently this is a problem for about 1 percent of people. Hmmm

– The type of cancer I deal with, vulvar, accounts for about 1 percent of female cancers.

– I cannot eat citrus fruit, again about 1 percent of the population.

It is getting to the point when a doctor says, “Well, only 1 percent of the population…” I go “fuck”. I am a 1 percenter.

Highway of Deers

No, that isn’t a typo.  Last night Andrew and I drove to Valemount for an “All Candidates Forum”.  (Andrew is running for Schoolboard Trustee in the upcoming civic electiona).   Apparently there are a lot of suicidal deer between here and McBride.

There was a light scattering of snow when we left Prince George and the roads were nice and clear.  Halfway there the road conditions changed drastically, a lot of snow coming down in big fluffy flakes.   Suddenly we both spotted a deer as it bolted into the oncoming lane, headed for our side. This is the conversation that ensued.

Andrew: Deer!!!!!! Begins to brake and practice evasive maneuvers.

Me: Oh crap! Braces for impact as it appears the deer is going to run into the side of the car.

Andrew successfully evades the suicidal deer and we both wait for the adrenalin rush to dissipate.

Me: Damn that was close.

Andrew: No kidding, however statistically what are the odds of almost hitting another one?  We should be fine after this.

Me: Well…..if I was to express it in percentages I would probably say one percent, however, since I am a one percenter that means the chances are actually pretty good.

Andrew:  Yes dear laughs

Me:  Just keep an eye out.

We continue driving down the road as it continues to snow heavily.  About twenty minutes later there it is, another deer, standing right in the middle of the road.  Fortunately we aren’t going all that fast and can easily avoid it.

Me: See? One percenter.

We saw a few more deer after that, but they were sticking to the ditch.

Later, as we were driving home, I saw a sign at the side of the road. “Caution Deer Next 15 Km”.

Me: We are supposed to caution the deer for the next 15 kilometres.  What do you want to caution them about?

Andrew: Unprotected sex and sti’s.  How bout you?  Can you tell he works in the public health sector?

Me: To look both ways before they cross the highway.

Andrew: Good one!

All the other deer we saw after that were off the road.  I am assuming someone else already cautioned them.




and a lone shepherdess..