Brand Spankin' New Ostomate! - Post APR surgery and Recovery. Pt 1

Alright it is time to introduce to the world a new member of our family. Colin! (Colin the Colon! Geddit?)

I was kind of against naming my stoma initially. Apparently it's a common thing for ostomates (someone who has an ostomy) to do this. After the surgery I can see why. I mean there you are, in the hospital wearing more tubes than the London Underground, high as a kite... what else are you going to do? Give in, cry from the pain, moan how much things suck? Or give yourself a giggle and name your stoma?

I am thankful for the folks who visited me while I was in the hospital - it made my 4 day stay that much bearable. Left alone I could see how easy it would be to stay in your own head and worry your nails off. After the operation the surgeon came in and told my husband how lovely to see my family there in the waiting room in support. Often times she comes to the waiting room and she finds no one there waiting for patient. So sad.

So the journey began at 6am. I went into admittance and they gave me a plastic hospital bracelet. I prefer Tiffany's but no matter. I was then led to the patient waiting area where I took everything off and given a beautiful gown of orient blue fabric. The opening was fashionably at the back. I was given an inflatable heating blanket that hooked up to a machine to keep my warm. It was loud! I didn't see the other patients get a blanket. Obviously I was given VIP treatment. The nurse inserted an IV into my left hand but apparently the vein didn't like a needle jabbed into it so she had to remove it and do it all over again in my OTHER hand.. gaaah!
"Such a shame too - it was such a good vein!" the nurse lamented.

My poor mom had to lug my winter boots and winter jacket AND my hospital bag all by herself all the way to the waiting room in another wing - I felt so bad. Luckily my godmother came and could help her. The moment of truth came and an orderly came to take me away. I will tell you the truth. The past few weeks I went out of my way to see friends and family before my operation date. I felt like it was a farewell tour. I didn't know if I would see anyone on this side of the fence again. I even took a picture of me and my mom for one last time before they took me away. I SUCK at positive thinking!!!

They wheeled me to the operation floor. A gaggle of nurses were waiting at the nursing station. I guess they were waiting for their surgeon's arrival. There were 8 operation rooms in one long row down the hall. Every so often a surgeon would arrive, get kitted out and disappear into their assigned room with their nurses in tow.  I chatted with a few nurses while the orderly confirmed my arrival. I made jokes that I wanted to eat this trophy they had on their desk. It looked like it was made of chocolate though it was made of wood. I told them I was sooo hungry I'd eat anything!!! That cracked them up. The orderly wished me well and left me parked outside the operation room. Room 2. So I laid there waiting, watching nurses and doctors pass by. No one passing wanted to make eye contact with me, but then again why was I insisting they look at me? I must of looked like I was on the edge of panic. Wouldn't be far from the truth.

I suddenly had to urge to pee. I waved a nurse down and she directed me to the nearest washroom. So there I was. Making a break for it in a thin blue gown and a blanket but otherwise butt naked under it all. How long would it take before they found out I left? I shook my head and did my business. Walking back to my stretcher was hard because I knew that ever step I took was my choice, my will. No - we are going to do this - eye on the prize Jene - eye on the prize.

So I hopped into my bed on wheels and that's when my surgeon made her appearance.

X Marks the Spot

I went to my pre operative assessment yesterday. (Thank goodness it wasn't today while we are getting pounded with 10-15cm of snow!) and the nurses asked me a million and one questions and the pharmacist checked out my health supplements, another nurse took some blood and the ostomy nurse marked an X on my belly to tell the doctor where to place my stoma. A rather pleasant if loooong hospital visit.

So in the end I finally made my decision in regards the type of surgery I wanted for my cancer treatment.

Originally while speaking with my surgeon (a hugely pregnant woman btw...Yes, I KNOW! With my preggo nose I couldn't even stand the smell of chicken and yet she still manages to be a surgeon!) I opted for the local excision which is to say they cut around the original tumour site and take a bit of healthy tissue to make sure that all cancer cells are removed. It's not invasive. The recovery is very quick.

However they do not take out your lymph nodes. They do not even look at your lymph nodes. So they stay in there all happy as clams but there is a 10% chance they will have cancer. Over all there is a 3-19% chance I will get cancer again. If I do get cancer it will most likely be in the first 3 years. By then it may be aggressive enough that it may have spread (liver, lungs, brain etc) and there is a 40% chance that they will not be able to do salvage surgery. If I get the cancer again I will be doing radiation, chemo, more surgery, medication, getting side effects from the treatment and / or complications.

Well that kinda sucks don't it?

I decided on the last option - to get a colostomy. ie a bag.

Yes, permanently.

And yes, it was a hard decision. But really the only logical decision.

The procedure will be a hard and long recovery. 6-8 weeks. Possibly longer if there are any complications such as the wounds not healing, abscesses, fistulas, adhesions. And of course I will have to deal with a new appliance attached to my stomach! However the prize at the end of the tunnel is 1% chance of recurrence and the earlier staged cancer I have the less likely I will have a recurrence.

Some are at a loss as to why I would do this extreme surgery. Some people even told the surgeon that they would rather die than get a colostomy, to which the surgeon scoffed and said "That's so stupid!"

I know that Farrah Fawcett died from rectal cancer. She didn't opt for a colostomy. She went to Germany for some alternative treatment. It still didn't save her. I don't know the real situation of course but I wonder if she opted for the colostomy in the first place would she still be here?

So my sole reason for doing this: My family. My kids are still small. They need their mommy. Also I want to be a granny with fashionable grey hair! My husband already lost a sister to breast cancer. And I don't want to put him through that again. I am my mother's only child. No parent should bury their child. ever.

My bag will be my badge of honour, my guarantee that I will continue to be a mother, wife and daughter and eventually a granny.

So if I have to gamble with my life then I will go with the winning horse and ride that pony into the sunset while laughing maniacally at cancer's loss. Screw you cancer!!!

(Btw that isn't my lily white, flat belly - I wish!)

Cancer - How It All Came About - part 2

Needless to say I had a very sleepless night post diagnosis.

I didn't know that when I walked into the doctor's office I was enjoying the last few moments of freedom as a normal health(ish) woman. Walking out I knew I had this alien invader that was taking over my body.

Sounds a lot like a case of the Body Snatchers really.

A lot of cancer survivors seem to share the same experiences after their diagnosis.
Worry, Anxiety, Panic attacks, Anger, Frustration, Grief, Fatalism.

There were a lot of crying, a lot of questions of "Why me?!" then "How did this happen?!", a lot of self and genetic blaming.

That first week I had what I can only describe as panic attacks - Rapid breathing, sweating, stomach churning - total fight or flight response. I just wanted to run run RUN away from the cancer. (Illogical, captain!)

If my husband wasn't there to hold me, comfort me, work through my anxiety I don't know what I would have done. (Thank you honey.)

So. After a lot of personal introspection we still needed to take care of business.

Business Item #1 - Appointments.

Ohhhhh the appointments. I was referred (wahey!) for a second opinion at Sunnybrook hospital (A top research hospital in Toronto.)
"I know you already did a CT scan but they will like to do their own scan at their hospital" confided the general surgeon.

Apparently there is a bit of a hospital bias towards their own hospitals. Doctors want scans done at their hospital with staff that they know and trust. The CT scan done at my local hospital apparently "wasn't that great" according to my oncologist so she ordered another CT scan. Sure doctor, I'd love to take another radioactive oral / IV dose for you!!!
I guess I rather they had a clear picture than one they had to guesstamate. "Um,...that looks like a liver...or spleen?"

To give you and idea of the appointments I have had so far:
September     -Annual Physical
October 3      - First Colonoscopy
October 21    - CT scan (They found an ovarian cyst!)
November 1  - Second Colonoscopy
November 5  - Ovarian ultrasound (Cyst is 1.7cm and not 3cm as noted in CT scan)
November 12 - Office appointment about ovarian cyst
November 14 - Office appointment - Diagnosis
November 28 - MRI and blood work
November 29 - Sigmoidoscopy - I wasn't asleep! There's a camera up my butt!!!
December 3   - Clinic appointment with oncologist - she wants another CT scan and ultrasound!
December 13 - Pelvic ultrasound
December 17 - CT scan
January 7       - Clinic apt with onco - Found something on my adrenal glands - wants another scan! (sob)
January 14     - Ostomy nurse
January 28     - CT scan (no IV dose! woohoo!)
February 18   - Clinic apt with onco - Adrenal gland is good.
Marchish       - Surgery

So far that's 17 appointments in total - not including the appointments for Naturopathic doctors, acupuncturists and massage therapy.... Thank goodness I'm not working because I don't know how I would have managed all the appointments and still kept a job....

Business Item #2 - Research

Internet time! Perhaps it is just me but I don't like being kept in the dark about things. I rather know all about cancer, rectal cancer, prevention, treatments, statistics, survival rates, operations etc etc. I want to go to my appointments armed with educated questions and not be coddled into believing everything my doctor tells me.

The general surgeon said I looked like I was Stage 1. My polyp looked moderately to highly differentiated. The cancer looks to have only gone through to the submucosal layer. WHAT DOES THIS ALL MEAN DAMMIT?!?

Some of the medical jargon was familiar because I had been studying for a medical office administrator certificate. Some I had to look up.

Moderately to Well differentiated polyp:
Differentiation is the grade of the cancer and it is based on how abnormal the cancer cells look under the microscope. Cancers that are poorly differentiated tend to be more aggressive – to grow and spread more quickly. [cancer.org]

Polyp to Submucosal Layer:
In stage I, cancer has formed in the mucosa (innermost layer) of the rectum wall and has spread to the submucosa (layer of tissue under the mucosa). Cancer may have spread to the muscle layer of the rectum wall. [cancer.gov]

I checked the statistics for cancer recurrence and cancer survival rates for Stage 1. It seems 80-90% over a 5 year period. Recurrence if it happens will happen in the first 3 years. Recurrence depends on the treatment and stage you are at.
For me chance of recurrence is 9-20% for a local excision (The site of the cancer is cut out along with a border of healthy tissue.) For a APR (Abdominoperineal resection) where they remove rectum and part of the sigmoid colon and they place a permanent colostomy the chance of recurrence is 1%.

Interesting fact: I found out that no MRI, CT scan or ultrasound can tell you that your lymph nodes are 100% clear. The scans are only 85% accurate. So really if you have a early stage cancer it's all a guessing game.

Frustration much?

I need as much information as possible in order to make an informed decision as possible. If I don't have 100% facts then I have to guess. But this is my LIFE and my decision impacts my children and my family - I really shouldn't have to guess about something so important!!!!!

Cancer - How It All Came About....part 1

Hair loss.

It all began with losing my hair.

For a latina who has had thick THICK hair the moment she was born this was definitely disconcerting. In early 2012 I was losing hair at the front of my head and I could see my scalp under certain lights.

[SPOILER!]
The following becomes a bit TMI so don't continue reading if you are grossed out about bodily functions!!!

In Sept 2012  I went to the doctor who sent me for a blood test - my iron levels were "borderline" (normal ferritin levels is 12 - I was 11) Referral time! So I went to a dermatologist and he said that I needed my iron level to be at least 40 to produce hair follicles. He said I should go back to my regular doctor for more help.
Mistake #1 - I put off going to the doctor.

Being mindful of my steak intake I finally go in Sept 2013 to get my (somewhat) annual check up. The blood test comes back. Iron/Ferritin levels are now at 4.
"But some labs use different values so it may not be that bad." the doctor said airily.
Either way I am officially anemic. Now we have to figure out where I am losing blood. 

"Women your age (41) tend to have heavier periods so sometimes this makes them anemic."
This is true. My sister was diagnosed anemic and she's in her 40s as well. She took supplements and seems to be fine.

I almost accepted this and would have left the office just at that moment until I remembered that I had occasional bleeding "down there" and this had been going on since I was 15. The doctor back then said I didn't have hemorrhoids so the occasional bleeding should clear up. It never did, in recently got worse and I never brought it up with the doctor again until today.
Mistake #2 - Should of talked to my doctors more!

She said that was very odd and unusual to have bleeding going on for such a long time. Referral time again!!! I went to see the gastroenterologist for a colonoscopy. By the way prepping for a colonoscopy is NOT fun - you have to drink a giant jug of solution and fast the day before. Wish there was an easier way to do that but hey, has to be done! On arriving at the clinic I must of been nervous because I was babbling like a maniac (ie Oh your name is Dr Salter?! My husband is a Salter too.. maybe you are related...blah blah blah!) the doctor mentioned that normally the procedure goes fine and if I don't see him when I wake up then everything went well. If I did him then they found something.

Guess which scenario played out?

I let out a big "OH CRAP!" when I saw him by my bed - folks in the recovery room peeked around their curtains to see what the hell was going on. He told me that they had found a polyp and it was close to the "exit" so I was going to be referred to a general surgeon. REFERRAL TIMEEEEE!!!
"But it's nothing to worry about, it doesn't seem cancerous!"
Mistake #3 - Don't believe everything your doctor says until you get the facts!

Colonoscopy number 2 and this time it's at the hospital. The surgeon said at first he wasn't entirely sure they could remove the polyp but they would have a "look and see".
In recovery I wake up.
"Good news! We got it all!" He seemed pleased with himself. Even took pictures. I got to keep one.
"I have been doing this for 30 years and it doesn't look cancerous!"
Please see mistake #3!!!!

Made an appointment to get the result of the polyp they removed. On Tuesday the doctor's secretary calls.
"Can you come in Thursday instead of next week?" she politely asks.
The bottom of my stomach falls out. It's cancer. I know it. You don't bring forward an appointment just for fun. I hope that the doctor has plans to go golfing or something.
I go to the doctor's and I hear the words I don't want to hear. While he's explaining the next steps for treatment I somehow don't completely break down. I walk out of the room and see my mother in the waiting room and I don't break down. I get in the car and clutch the steering wheel and I don't break down. I make it home. I sit in the living room and I tell my husband and my mother that I have cancer.

I break down.

"You Can't Always Get What You Want - But If You Try Sometimes You Get What You Need"

This song was playing on the radio when I came back from doing my adrenal gland CT scan.

Kind of reminds me of the saying "The Lord will not give you anything you can not shoulder yourself." I told myself that saying a lot when Aidan at 3 months was diagnosed with multiple food allergies. It was a very stressful year!

This is my third CT scan and for the last two times I have had to drink an oral contrast and then get an IV of the fun stuff. They lie you on a board and slide you through a donut shaped machine while a robotic voice loudly and bossily tells you to "Breathe in... HOLD YOUR BREATH....Breathe.." The first time I did the scan I felt like hyperventilating. With all the breathing in and holding - I was uber conscious of my breathing and it was all over the place. The second time I knew what to expect and I was more relaxed. The last time was the same but they told me that I may not need the IV, the technician will check the images first to see if everything was visible. He came into the room after a time and said "Good news! No IV!" I was pleased and replied "It must of been me drinking that contrast every 15 minutes!" At that the tech glowered and muttered mostly to himself, "I do not know why they make you drink that stuff, but I do not write the policies or procedures..." !!!!
What does THAT mean? I don't really need to drink this chemicaly drink!?!?! Gee, thanks!!!

Every Journey Begins With One Step...

When I was told I had cancer I thought it was the end. Nothing would be the same and it was all downhill from there. But weeks later after reading the internet from end to end on all things cancer I came across someone who said that they consider the day they were diagnosed as the day they became a cancer survivor. Not the day they had their surgery. Not the day they had their last chemo session. My darkest day was their most optimistic day.
After a while I understood. The fact that it was diagnosed AT ALL was the miracle. The fact that their journey to heal began that day was to be celebrated. It goes to show you that we can let something break us or we can learn from it.


I will not let this break me.