Rough Times And Another Surgery For Me

Those who have been following along on Facebook have seen some status updates that have indicated something was really wrong with me this last month and a half.

Through weeks of diagnostics and conferences between my Dr's and Specialists, and through endless evaluations of every kind, there seemed to be no answer to why I was so tired that I could not lift my head from the pillow some days.

The symptoms were so extreme, that if my Dr had not had such amazing cardiac test results for me in his hand, and great blood work in his hand, he would have thought that I was experiencing some sort of cardiac failure.

Then this weekend everything changed again. A lump rose up just under the scar from my vulvectomy site and it grew very fast.

Today the Surgeon didn't bother with an O.R. , he just expanded upon an in-house biopsy, and basically did another vulvectomy under local anesthetic, taking a super large site encompassing the whole of the lump plus surrounding tissue to test for malignancy.

I have a strange lump on my right leg-in the quadricep muscle(the tech called it a ropey mass), and the inguinal lymph node is tender, so they did an ultra sound on both those sites this afternoon, and they have booked a pelvic ultra sound and an abdominal ultrasound for Sunday morning. Plus I had a chest xray on Monday.

The Dr's have covered all the bases, just in case this is not just stage 3 VIN3 as before, and it has advanced to a malignancy. The Surgeon is optomistic that he got it all, but he reminded me this cancer returns over and over again, and getting it early will keep me healthy. It is rough news to know I didn't make it 6 months from the last surgery, and I didn't make it 1 yr from the first vulvectomy.

I hope this was the culprit to me feeling so physically bad, but just in case it is not, the Dr's are continuing the investigation to the mystery why I have taken so ill, so suddenly.

I didn't want to tell everyone until I really knew what the Dr's were going to do for me. Now the surgery has already happened, I at least have something concrete to explain to everyone.

Thanks for all of your concerns. Thanks to those who were patient and did not probe me too much when I said I would have something to tell today- and they were willing to wait.

Thanks to everyone who sensed something was really wrong and sent strong messages of support even though they had no clue what was happening....they just knew that I was not able to be me, and it was scaring them.

My Dr's have been so good. They have all been talking and have not left me just hanging out there with no support. I have had so much support it has exhausted me going to do all the stuff they suggested we try to get to the bottom of the mystery.

In two weeks the pathology results will come back, and I hope they will come back with no malignancy so I don't have to think about Christmas Chemo or Radiation.

I am scaling back my life for a bit.
I will be only releasing the Christmas stuff I have for the shop, and I will not be working or designing anything new until well into the new year. I have the shop closed on vacation until the end of the week, and I will open up again and publicize some Etsy Team events, and then I will close up the shop on Sabbatical, just before Christmas.

I will be only focusing on one thing this winter. I have a paper to write and present in 2011, plus I am just finishing up a workbook I am writing, and a novel. I figure even if I am stuck in bed I can still write. So I will be concentrating on my academic endeavors, instead of my artistic endeavors. I just don't have the energy to do both right now, and I have to learn how to create some boundaries, so I can stay well and not get into the pickle I have been in this past month.

http://motivated-motion.blogspot.com/2010/11/rough-times-and-another-surgery-for-me.html

Let Us See If I Can Write Something....

This ole blog has been quiet for a while.
After my surgery my shoulder felt improved and less frozen and loose.
Unfortunately this also means the injury is now not protected by the frozen muscles, so it is way more painful now even though I have improved range of motion.
I can lift my arm up 45 degrees which is quite improved from "nothing".

My surgery was not a success.
Sorry I am giving you bad news.
The pathology said there is one edge that is not clean.
Plus something more serious has happened to my bladder. It is leaking some how. I guess the stitches moved old scar tissue and it is messing with my valve.
And when they MRI'd my back they found an ovarian cyst by accident.
So things have become quite complicated.
Now I need a bladder scope (Feb 11) to check for VIN3 in bladder as it can go anywhere....
Plus more excision surgery for the VIN3.....and...........now remove an ovary...........and.........repair my bladder.

I had to fight for everything I got above.
I had to make my case to prove I was worthy of proper surgery rather than just watching and see what happens.
I had to remind the Dr. that estrogen fed cancer killed my grandmother, and bowel cancer killed my other grandmother and my mom had the VIN and it went malignant. I don't need to be reminded.

I also clued him in to the idea that what happened to me was a freaky coincidental mimic to the horror that was my Grandmother's cancer. She too had frozen shoulder and was being treated for it when her arm broke because the cancer had metastasized to her bone in her arm and ate right through! Me getting a VIN3 diagnosis at the same time as getting frozen shoulder almost put my parents around the bend with PTSD!

In 1993 I had to fight to get my surgery and in 2010 it is no different.... But weird enough it doesn't feel like a problem with the system..... It seems to be with perception and outlook instead. I don't like to say this because I am really not too much of a women's lib-er. But it really feels like Women's sexual organs/reproductive organs/gyne health is still stuck in an age where MEN seem to have all the say.
I would take all of my organs out and have my breasts taken off if I had to- to keep a strong body instead of a weak one. To be HERE parenting and interacting with my friends and family.
I am not and never will be defined by my crotch or my breasts.
If I have to risk heart attack and stroke for surgery then I would rather risk it early in the problem while I am strong and might live through it, rather than take a wait and see approach which could render me a stroke or heart attack while I am weak and on chemo and or radiation with no hope of surviving!
Question of the day. If a man had a significant cyst in his right nut sack and every time he moved he got a burning twindge in his schlong that would drop him to the ground.....Would The male Dr's take the Wait and See attitude and let him wait 5 more months into the second year of his pain?

HA HA

http://motivated-motion.blogspot.com/2010/02/let-us-see-if-i-can-write-something.html

"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!

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