"If the surgery doesn't go well, I have everything done so I don't have to worry about the holiday feast meals and stuff. If the surgery is uneventful it just means I am on vacation till January!"

That is a quote of what I said yesterday before my surgery.

Today I get to tell you : "I am on vacation till January!"

My surgery was uneventful for the most part. I had one complication that delayed me coming home- so I didn't arrive back home until after 8PM yesterday.

I arrived at the hospital at 11AM and my surgery was booked for 12:30PM. I was taken to the OR at 1PM. I was given a spinal (like an epidural) anesthetic so I was awake for the surgery. I was completely frozen from the diaphragm down. I could not sense hot or cold, motion, pain, touch....nothing.

I was not given any valium or a tranquilizer so I was alert for the whole procedure.

The anesthesiologist was a visiting anesthesiologist from Montreal. Apparently it is quite common for Dr.'s to use some of their vacation time to go try things out at other hospitals. They can use hospital fellowship to try out a new town to see if the hospital or town meshes with their lifestyle: for relocation, or they can go to a hospital that has rare equipment so they get to try it out, or he might want to work with a specific specialist who does some complicated surgeries so they do a vacation placement.

The surgeon and the two nurses and the anesthesiologist got along very well. Once they realized I was a cheery person they joked around a lot. They asked permission to tell some really raunchy gynecological jokes, and we were all just howling with laughter in the operating room. In the end it turned into a girls against the boys pissing match and the nurses think we (the girls) won!

We discussed our families and hobbies and our education and work pasts. One of the nurses was 38 yrs in OR and 32 at Southlake Hospital!

In the end the Dr. asked if I thought I could needle felt a Samoyed Husky for his wife....LOL
It is so typical for an Etsy seller to turn every conversation back to their love of Etsy and crafting........So look! I have a challenge for my vacation :)

The surgery was uncomplicated which surprised the Surgeon. Everyone was prepared for anything. I was referred to as: "The neurological disease patient", and apparently neuro patients are a challenge because absolutely anything can go wrong and will go... and they cannot even predict how it will go wrong. I ended up a miracle with really nothing happening.

I spent about an hour in the recovery room. I got to watch all sorts of folks wake up from their surgery. I really saw how difficult it is to be a recovery nurse. First of all I want to tell you that at Southlake Hospital in Newmarket, ON the recovery nurses are kind and cheery. They are instictual with their monitoring of the patients. There is usually one nurse for every patient and then once you begin to respond well they can add another patient so the nurse has no more- then two patients at a time. Children get two nurses per patient. Everyone who woke up from surgery except for the patients who had their noses operated on was combative and confused for a few minutes while they were waking up-after the tubes are removed from their throat. Everyone tried to move or touch their surgical area and had to be safely restrained by the nurses while they came around. This restraining is not with a tool but by having the nurses hold the patients wrists and keep them away from the body and then talk to them in a gentle manner so they begin to understand what has happened. They would try NOT to grab the patients' wrists hard yet still hold them, so it meant the nurse would become a rigid post so the patient was blocked from their own face or body. These women are all small. This has to be hard to do. I was absolutely amazed. They have to be so tough and speak so kindly and gently to the patient at the same time.

I could never do that. I would forget and say something snappy.

Once the patient comes around they finally listen to the nurse instead of panic and they stop trying to touch themselves and peace sets over the patient and they just relax and let their oxygen and meds kick in.

The nurse manager never sat down the whole time I was there. She had a walkie talkie and would get paged on it when the OR was ready to bring in another patient and she would tell them which bay was available for the bed.

I also noticed that there is a special relationship between the Dr's and the Recovery nurses. The Drs tell the recovery nurses everything. It is like they are their mothers. They tell the recovery nurses all their news and ask advice. It seems the Dr.'s hang out in recovery between OR times and write their reports cuz it is usually fairly quiet in there. There is time to talk when you are checking out stats and examining the patient when they are asleep. It is very obvious that the Surgeons would be lost without their OR and Recovery nurses. It is like they are all best buddies.

The step down unit has a different dynamic. It is busier. Everyone is awake there and basically two things happen there. The patient finishes their protocol in that room and is medicated, and then they are discharged/or admitted.

It seems there is one nurse for every 3 patients and when one is ready to discharge, and is waiting for the Dr. to sign them out they can take a 4th, and this is when there are no complications. Complications require one and one care. If complications arise and there are not enough nurses for the protocol- the nurses from OR recovery will float in as their patient numbers lessen.

Step down has rules for patients that cannot be broken. Most of the patients have a time rule. The surgeon sets the number of hours the patient must be in recovery and step down and there are no exceptions on the minimum amount of time the patient must stay.

I had a different rule. I was told that spinal patients cannot be timed as there is no way to know how long it will take before the patient can walk, and the patient must be able to stand and walk with aid. The big rule for me was I could not leave unless I pee'd.

All day that is what I was told. I waited to thaw out and the nurses reminded me constantly that I had to pee. They gave me tons of IV fluids and had me drinking ginger ale, water, and tea over and over again. Finally I began to feel hot and cold. I could move my hips but I could not bend my knees or flex my feet yet, but I could wiggle. I also felt like my bladder was full but it didn't feel urgent. So I was feeling pretty confident I would be able to pee.

It seems that often the bladder and urethra forget how to work after the spinal and they have to be woke up. Some folks get a full bladder and cannot pee. Then they end up having to be catheterized to empty the bladder, then they have to let the bladder fill again and try to pee. So you can imagine a frustrating and time consuming event. Not too fun for the patient or the nurses.

So here I am hoping to avoid that embarrassment and uncomfortable procedure, and quite hopeful that I won't be one of the statistics.

Oh I wasn't a statistic when it came to the peeing. No...not at all. Not in that category anyhow... I just ended up creating an unique category to begin a statistic on!

I lived up to my "Weird" patient reputation.
Thus I fulfilled the dreams of yet two more Dr.'s who aspire to be a real-life "HOUSE"(referring to the TV character DR)

Once I could feel hot and cold I told the nurses that I felt like something was wrong.
I lifted up the sheets to look down at my legs as they felt wet.
To my horror I was sitting in a puddle of cold wet urine. (collective EEEEEWWWWWWWWW!)
Yet my bladder was full. I cold feel it.
Nurse panic set in. The OH SHIT looked came over 4 nurses and they were on me like flies on honey.
They were in the middle of trickle closing the unit and lots of the nurses were trickling out to end shift and team was suddenly crazy trying to figure out what to do.

Leaking is not normal.
Of course they have to interrogate me to make sure I didn't have a secret incontinence problem I never told them about..... (and at that time I found out if once-in-a-while you sneeze and squirt does not count as incontinence BTW)

Once they realized I did not arrive at the hospital with such an issue, they had to decide how to deal with me. It was then looking like I was being admitted. But as the Dr's and Nurses spoke to me about the problem it seemed they were trying to determine if I was bleeding into my bladder and pushing the urine out, or if the valve was just leaking because it was overly frozen still. The odds leaned toward a bladder fistula and not towards a frozen valve. and there was no way to be certain what was the truth and someone had to make a call on whether I had to go back into surgery or would be given a chance to thaw a bit more and see what happens.

Time passed and the unit emptied out except for myself and another patient who was extremely ill. Once there was no one around, and just before the second last phase of nurses left I negotiated with them to try one thing. I told them that my bladder felt full and that my legs felt like I could walk so now the other patients were gone and we would not freak everyone else out if I leaked all the way to the bathroom, could I try to void and see what happens? The Nurse flipped me back up on the bed and grabbed a portable ultra sound and determined there was 700cc of urine in my bladder which was really full. So the nurses said they would try it, eventhough we could potentially slip. The Dr. gave permission and we tried it. I went really slow so no one would step in wet. I got to the toilet and sat down and they just left me to relax there a bit to see what would happen......

At first it was like a leak. I could not really feel anything there. Then the trickle became a stream and I tried to stop the stream and I was successful! I then keggled my way through it all and emptied my bladder. Yeah!
The nurses were so excited!
Then they had to try to get the Dr. back out of the OR to sign me out.

Around 8 PM on Wed I got signed out. I had successfully voided three times with complete control and was no longer a leaky sieve.
It was decided by the Dr. that my bladder was still frozen by anesthetic and was so full it leaked.
They said my bladder is the size of a child's and 700cc is over full for a child.
Peeing if you sneeze is called stress incontinence and it doesn't count as a concern for Drs.

I have lots and lots of dissolving stitches from two surgical procedures done at once. I had a vulvectomy removal of the labia right side to excise VIN3, plus the marsupialization of a Bartholin Gland cyst( they turn the gland inside out and leave it to the body to take care of it)

Now the Bartholin Gland issue is probably related the glandular cysts caused by my Sjogrens disease(which is a connective tissue arthritis that kills glands in the whole body and connective tissue). Also the susceptibility to VIN3 mutations is caused by a combo of genetics and the Sjogrens tissue disorder. The Dr said even though it took almost 20 years for this cancer to return on me, the chances of reoccurrence is more likely now, but the nature of this cancer is that is best to just use due diligence to eyeball the area rather than to put a patient through chemo and radiation as a preventative. He said that they litterally know so little about this "old women's" cancer, because it is fairly rare, that they cannot even determine if women get these mutations often and seek no help because they have no symptoms and it is possible their cells die off before they become malignant- thus taking care of themselves before anyone even knows it happens/OR/....This is surmized by the Dr's because they cannot explain the low 1st occurrance rate of this cancer any other way except to predict it could have two directions it goes - one: that takes care of itself and folks are none-the-wiser and two: the kind that begins to flourish and becomes a problem and symptomatic, and then it spreads fast and it's too late....

So I was a weird interesting surgery that a Dr. might not get to see too often.....apparently...and the anesthesiologist got to see the fancy part of the procedure right along side the surgeon.
I guess folks don't get to be a viewing guest on this surgery much because it is usually embarrassed old ladies going through it, and a surgeon could not make a spectacle of an old lady.
Us middle aged women have no pride once we had to deliver our babies.LOL And we still remember what it is like to have someone interested in our crotch (blushing LOL and a giggle)

I just told the surgeon that if he was going to dig for buried treasure down there I wanted 20% of the booty!

So I am home. I had a comfortable night. I slept well and didn't pee the bed! :)
I am a little stiff in the lower back from the spinal and I am feeling a bit of rubbing on the stitches but otherwise I am good.
I had to put Poloysporin cream on the stitches and there are I think like 30 and 20 stitches.... on the two sites. It feels like I had fancy plastic surgery down there. So I think that once it heals it will look normal and feel normal.

I feel like I am rambling on a bit when I talk. Al told me I texted him last night and I actually texted slurred LOL. I remember sitting in the bathroom texting him. So today I looked at the text....LOL It was hilarious!
Here it is....and I quote: " Al sorry i didnt call you back,forgot. Pain pills kicked in If u happen to b awake text m and you can cAll cuz ev awakw here othrwz cal when u get a chance tmrrow"

I stayed on the top floor of the house today. I thought it would be stupid to try the stairs. I feel like I am under the influence still, so I will just chill.......

Overall it was a positive experience. I would recommend to anyone to take a spinal for any surgery you can possibly do awake. It is much safer all around and you feel really good after. There is no sudden pain issue with it either which make me think the sudden awareness causes sudden pain as a symptom of the sudden part of the experience. You also get a real appreciation for the folks working in recovery when you are that aware......

So I will definitely be having a cystascope on my bladder in the new year now. They will do it to scan the bladder and urethra for VIN3 patches and to see if there is a mechanical valve issue to deal with.

I think I need to make a big deal out of New Years this year. I think I need to really boot 2009 on its ass and out the door and welcome 2010 with Whoot(tee hee) and a holler!
I want this surgery to be the turning point. I refuse to have two years like 2009! I absolutely refuse!

https://motivated-motion.blogspot.com/2009/12/if-surgery-doesnt-go-well-i-have.html

I Took a Chance To Tell The Story And 5 young people Wrote Me To Tell Me They Were Going To Go Get Checked Out

I have to thank everyone who responded to my blog post. Some heard about it through the RSS, some heard about it through Twitter and Some through Facebook.

I received over a dozen notes from friends and family over the last two weeks when I basically disclosed the cancer in one sentence on Facebook.
Then when I decided to go public with the type of Cancer I got some of the most emotional notes I have ever heard.
Folks reached out to me from all over the world.

The most important notes were from 5 women under 25 who said that they were going to get checked out.......
If I can get 5 women to go get pap smears and think about their woo woo in a different light, I think I have accomplished more than I could ask for.

I know women over 25 wrote me that they were getting checked out too.....and I am glad for it. I just did not think I would effect younger women in the same way, and I am grateful that so many are thinking about their woo woo more.

And a note to the guys. You can think of our woo woo in a different light too. If you are so inclined to check out the area with your good eye (LOL not THAT EYE) then have a look down there on your loved one's package and make sure it all looks like the inside of your lip and if it does not..... make sure you tell your lady please.......Pink is right White plus brown or black is bad .

I had a crazy day.
That dumb shoulder problem that has slowed down my jewelry making has now stopped it for a bit. I have tendonitis of the bicep.
(Please....just roll your eyes now....because I am)
Now I will be doing extensive physio to get it mostly healed up before my surgery. Hopefully my shoulder will recover quick, so I will be able to brace myself better when moving around after the surgery.

Friday I go to the surgeon and he books my surgery. He felt that it would be within the next 8wks.
I will let you know what I find out Friday....

https://motivated-motion.blogspot.com/2009/10/i-took-chance-to-tell-story-and-5-young.html

Carcinoma in Situ
(photograph taken by euthman found on Flickr)
The Biopsy results are in.....
Cancer locked within a cell membrane.
This is what I have.

VIN 3 non HPV related cancer.(Vulvar Intraepithelial Neoplasia, grade 3)

The more technical term of having cancer of the woo woo years after a hysterectomy.

I toiled about whether to spell it all out or not. I thought about it being Breast Cancer awareness month and all- I felt that perhaps if you are not embarrassed too much by having to read about my bird cancer then you might learn something you didn't know.....and perhaps it will help you know what to be worried about if you are over 40 and under 100 if your woo woo changes...

Yes of course I am being funny about it! Because it sounds a lot better being funny calling it woo woo cancer than Vulvar Cancer of the Labia Minor (blech)

Geography lesson: the labia minor is a small flap of skin on the edge of the vagina, and labia major is the larger flap of skin on the other side. The Vulva is the outside visible area of the woo woo (LOL)
This cancer was caught because of an unrelated examination of cyst, and the dark mark was noticed by the gynecologist when he was checking out the cyst right below it.

Mine is a black dot with a white rough edge. When vinegar is placed on the spot the white raises up and looks wet. That is the first test. The second test is a surgical biopsy using a core punch device that takes about a 3cm cylinder of tissue from the spot. Then a couple of stitches.... If the dot and white rough edge is lumpy like cauliflower then it would be HPV infaltrated as well. Mine is flat. The flat stuff eventually becomes a flake (mine is not a flake yet) then it becomes Lichens disease. Very similar to what skin cancer looks like.
If you have ever seen a tanned person with white flakes on the back of their hands or arms or ears or lip, this is Lichens in the external form. On a mucosal membrane it is then categorized as a Vulvar cancer and not caused by the sun, but effecting the cells in the same way as squamous cell cancer on the rest of the body.

In latter stages VIN becomes insanely itchy. Then is spreads fast and can take over the whole of the vulva and clitoris and all of the vagina and even the bladder. Apparently that looks like little white bumps like razor burn bumps or clusters of larger lumps.
It is easy to mistake the bumps for razor burn or yeast infection or a pimple.
Once it becomes malignant it can spread to the lymph nodes, and rectom.

I had no symptoms. My mark is isolated and small. Mine is level 3 which means the next level worse and it is malignant. So you can see if you see some thing there or feel itchy it already could be greater than level 3.
If you are a teen and sexually active this is why you need to get a PAP smear every year. If you are an adult you definitely need to have a PAP smear.

Even if you have had a hysterectomy you need to have a partial PAP smear. They do it every 2-3 yrs after a hysterectomy, and it is a swab of the vagina and the hysterectomy scar in the vagina. I have mine done every 2 yrs.

If you get a lump, or a dark mark with uneven edges or white edges, or insane itching you have to go to a gynecologist. The early stages of this cancer (like what I have had twice now) is easy to cut out, but if left un attended or detected ,with this cancer, a woman could be severely disfigured from the excision and have to have multiple corrective cosmetic surgeries to look normal again.

A hysterectomy is nothing compared to the Vulvar surgery if it has to be invasive. They will dig deep into the pelvis to get out all of the cancer and you may not have use of your bladder or bowels again ever and losing lymph nodes means chemo and radiation.
Radiation and lymph removal make a person susceptible to lymphedema which is the pooling of lymphatic fluid in the legs and/or arms that is irreversible causing symptoms that look like elephantitis( swelling of the limbs as to create thick club-like limbs looking the size of elephant's legs)which is disfiguring and painful.

Girls that get HPV related cancers could get this cancer I have in a more aggressive form, plus have the terrible pollips to deal with. 6 out of 10 VIN cancers are HPV related. If you are young or you have daughters consider getting them HPV tested and get the HPV vaccination because I could not imagine how horrible it would be for a teen to get this and risk never being able to have a relationship or family ever because of being so disfigured.

HPV (Human Papilloma Virus) is a STD. It is caused by having too many sexual partners. From what I understand it is really common in teens today. I recall something like 75% of sexually active teens will have HPV.

Where I did not have HPV, if I did, my prognosis would not be as positive as mine is today......

So how does one get VIN? Well VIN means the cells are mutating. They are Neoplastic. They go from being normal cells to mutating and if the cell changes blast through the membrane then they become a malignancy.
Trauma can stimulate a cell to mutate. Trauma can mean almost anything. It can be trauma because of an injury (like falling on the bike crossbar) or having a tough vaginal birth delivery, or it can be because of trauma from a virus like HPV.
In my case it is trauma from another underlying condition that attacks my membranes.
The trauma could also be long ago, and the scarred cells can begin to change if the person is under severe stress which lowers immunity.


It all started with something completely unrelated..... a lump. More specifically a Bartholin cyst. A gland that makes that area moist got blocked. This can happen at any time and is easy to deal with a micro catheter. I have a gland disease so I have to have it checked out.

I was diagnosed with Sjogrens disease in 1995. It is an arthritis of every gland in the body that excretes. I have no saliva or tears, and problems with my pancreas, kidneys, and all mucus membranes. I have chipmunk cheeks from the saliva gland cysts, and similar problems in my esophagus. My Sjogrens is called secondary Sjogrens. It is secondary to another autoimmune disease, or in my case three other, so I have Osteo Arthritis, and Rheumatoid Raynods, and the third is the illusive tag of Lupus. It is a deadly combination for those with this multiple identification are super high risk for Sclaroderma, Diabetes, Cancer, and PolyCystic Lung Disease, and PolyCystic Kidney Disease. Basically my body is rejecting its organs.

This arthritis causes extreme distress to tissues making them break down. So the inside of my body is aging at an alarming rate. While the outside usually looks quite younger than my age. This combo distressed the tissue making me susceptible to Cancers. The arthritis made me susceptable to Shingles of the Brain which I got in 2005 (which also usually occurrs in folks over 60yrs of age)

It already made me a diabetic and caused me to have numerous surgeries before the age of 35. Now begins another cycle. I now get a cancer that only 70-80yr olds get....and I am 46.

So this year alone I had to add severe degenerative Osteo Arthritis, transitioning type 2 to type 1 Diabetes and Cancer to my list of new health issues.

I am usually cheery and positive almost all of the time.
I take it all in stride and accept my roll as: the human experiment for all of my specialists trying to figure out how they can write papers tying all my diseases together.
My Pain Specialist has admitted to me that me being so abnormal in my medical pathology really upgrades each Specialists' experience in medicine to know me....they all feel like HOUSE. LOL

I will admit whole heartedly that me the bubbley, and cheery and the positive high-spirited persona cracked a bit in the last two weeks. The health strikes this year had worn away at me, and my mood could not stay positive when they sprung a cancer diagnosis on me again.
I really began to worry for my family this time. I could see this diagnosis on top of all of the other medical problems this year was more than everyone could bear and we were all showing signs of strain after such a tough summer for my health.
I have had a lot of strange pain since February, so I just could not stay positive about this diagnosis, and I was really worried that I would present with some weird genetic cancer like Pagets and that the arthritis in my x-rays would have been bone cancer in that case.
In retrospect it is just a coincidence, but when you have serious pain then you get something else it is hard to ignore the pain from the diagnosis.
It is impossible to be cheery all the time in this situation.

I once again had to address my own death. I am 46 for pitty sake! I have had to seriously think about death being imanent.......again! I have had to do this 5 times in my adult life! And I don't mean a thought like, "oh I might die". I mean the kind of thing where you have to tell people where your will is and where your insurance papers are and your banking passwords etc.....I have had to do that 5 times already. I don't think normal folks have to do that! This can be extremely frustrating to face over and over.

So yes...I can be vulnerable eventhough I have this great zest for life.
I just wanted you to know that - yes- I can get down about stuff sometimes too, even if I don't
dwell on it for long.

I do have to do some medical maintenance now though. Today I go to the family Dr. to discuss getting a Urologist to do a cystascope to check the bladder for the same VIN....just as a precaution. If I had not already had a colonoscopy I would have had to book that too - to check for the VIN there too. PLus I will see if the diagnosis will up me in the protocol list for the MRI on my back and pelvis.

So I am back to myself, a bit tired but no longer under the influence of worrying if this is the one that will kill me.
I am now preparing for surgery.
Friday the surgeon and I plan the surgery.
Friday afternoon I get on with the rest of my life :)

https://motivated-motion.blogspot.com/2009/10/carcinoma-in-situ-photograph-taken-by.html