surgery June 1st

I am looking forward to the surgery on June 1st.  my tumour has burst through my skin.
It is time to get this thing out of me.

Warning... yucky photo...

It looks gross

Yes it is painful

Only 3 days to go

Celiac

This is a different topic today.  One of the other parts of my life is I was diagnosed with Celiac disease back in August of 2015.  I put together this letter for restaurants as I find that the Chef's and staff don't really know what gluten is and I keep having reactions after eating out.  If you have Celiac please feel free to copy and paste and use yourself.

Dear Chef, I have Celiac disease which is an autoimmune disease that is an allergy to Gluten.

The following are foods that contain Gluten that I am allergic to. Gluten can be found in sauces, spices, salad dressings, soy sauce, ingredient list of pre-packaged foods:

• wheat starch
• wheat bran
• wheat germ
• wheatberries
• KAMUT® khorasan wheat
• couscous
• cracked wheat
• durum
• einkorn
• emmer
• farina
• faro
• fu (common in Asian foods)
• gliadin
• graham flour
• kamut
• matzo
• semolina
• spelt
• barley
• bulgur
• oats (Avenin present in oats is toxic for celiac people )
• rye
• seitan
• triticale and Mir (a cross between wheat and rye)
• malt
• Brewers yeast

Please check your ingredient list and inform me what on the menu (which is not fish) that I can eat that does not have any of the above ingredients within the menu choice.

Thank you. Its not easy to eat out, and the help you provide me today is greatly appreciated

Enthusiasm

One of the side effects of my sarcoma journey is a huge boost in enthusiasm and optimism.  I have so much happy energy these days.  I see the good side of everything.  Like I have rose coloured glasses on, and everything is beautiful.

Now my enthusiasm is not currently matching my physical stamina.  I still nap a lot, and by 6pm I am "cooked" physically.  In my mind though I have so much energy and want to take on the world

I am so looking forward to getting Mr. Lump out of my leg so I can get on with my enthusiasm physically.

One of the discoveries has been how much I love myself just the way I am.  I don't need to diet, or change, or be different for self approval.  Very odd.  I find I am letting go of old feelings.  Even people who have "annoyed" me in the past, I feel warm feelings towards.

This is an interesting inner journey, that is very peaceful and a happy place.  (Not that I don't have some anxiety attacks).  Overall Life is good and I am so grateful for everybody who has sent me notes, helped out, gave out good vibrations my way.

Now, I wish I could have figured some of this inner peace stuff out without getting cancer, but hey, I had to make my life more adventurism.  I am taking the opportunity to smell the roses and prioritize people and relationships in my life.

So this is my sappy post at 4:19am on a Wednesday morning.  Hope everybody has a fantastic day....it's hump day!

Current personal anthem

I Believe I can fly

R. Kelly

 This is my current personal anthem.  When I hear this song, I don't hear R. Kelly's voice, I hear my friend Emilio's voice.  He is a person who walks into a room and the room lights up.  He exhudes love, compassion, kindness and understanding.  His voice is beautiful, and his rendition of I Believe I can fly is incredible.

The words tell me what I can do

If I believe it - I can do it - I believe I can fly

I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true love
I'm leaning on the everlasting arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day (Night and day)
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly hoo

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, ho oh

If I can see it hoo, then I can be it 
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
Oh, I believe I can fly hoo

Hey, cause I believe in me, oh

If I can see it hoo, then I can do it
If I just believe it, there's nothing to it hey

I believe I can fly hoo
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly (I can fly)
I believe I can fly (I can fly)
I believe I can fly (I can fly) hey

If I just spread my wings (I can fly)
I can fly (I can fly)
I can fly (I can fly)
I can fly, (I can fly) hey
If I just spread my wings (I can fly)
I can fly (I can fly)
(I can fly)
(I can fly)

Songwriters: KELLY, ROBERT S.

Medical Update

Yesterday was the doctor appointment day.

Friday April 15th is my last radiation treatment, then I go home on Saturday after cleaning up the condo with my husband Chris.

Here is what I learned

• There are only 440 people in Canada (a population of 36 million) who have sarcomas, that's how rare it is.
• They are still researching the cause.
• My radiation treatment did not shrink the tumour  - that happens with sarcomas
• The radiation did sterilize the area so when they take out the tumour if any microscopic piece is missed, it should be dead tissue and not create a new tumour.
• Radiation burns don't stop progressing after the radiation stops (bummer).  For two to three weeks after the radiation burns on my thigh get worse. (all for a good cause)
• That is why they wait for the radiation to heal before they do surgery.  Usually 4 to 6 week healing before surgery.
• If they do the surgery before the radiation heals I have a high chance of infection.
• The doctor said my surgery will be scheduled the end of May.  He told me not to worry, I won't hear until mid May as to the date.
• The biggest part of recovery is the open wound healing.  They are taking tissue the size of a large cantaloupe out of me.  I will be coming home with probably drainage tubes and home nursing wound care visiting me.
• I am in the hospital 5 to 7 days.  To get out, I have to be able to walk with a walker, use the washroom unassisted, be able to control pain through oral pain medication
• I have a 30% to 50% chance of wound healing collateral damage (basically infection)
• The doctor hopes to save 60% of my quad muscles 
• I will get a preoperative appointment with the anesthesiologist sometime in May and another MRI at Princess Margaret before the surgery at Mount Sinai
• I can do the physiotherapy in my hometown (once the wound heals)
•   For my mental goal, my  goal is to be back at work last week in August (Ideally) to first week in September.  I have a desk job, so I can hobble my way around work and do physiotherapy at the same time.  My brain still works lol.
• I am in a study (as sarcomas are so rare).  They will analyse all my tissues and I will get to do lots of questionnaires over the next 10 years.  I do believe I can help others with my experience.  
• Here is the 10 year plan:  for the next 2 years I get to go to Princess Margaret every 3 months for testing and examination.  From 3-5 years I go every 4 to 6 months.  From 5-10 years it will be once a year.  I am discharged after 10 years.

so that's the update

The doctor said the most frustrating thing in the short term is waiting for the surgery date, as they really book it just before the surgery, so I could only have a couple of days notice.  Guess that beats worrying until the date :)

For visual my tumour is in the Vastus Medialis which I find interesting.

Deleted Uber - went from "like" to "dislike"

Hello all

My 5 week radiation journey is nearly complete.  I have 4 more sessions left then I am out of here!

In the meantime, while in Toronto I have been testing Uber vs Taxi.

At first I was in LOVE with Uber.  I was preaching Uber.  It was easy, there was an app, everything was charged to my Visa, receipts emailed to me, which makes it easy later for my taxes.  I had great drivers.  Slowly though things changed.  I found that the drivers were so reliant on their GPS that they couldn't find addresses and GPS is not always accurate, you need to use some common sense too.  I am using a cane and they kept waiting on the street instead of pulling up the parking lot and up to the condo front door.

I started getting nervous drivers.  Very nervous drivers who have no business driving on downtown Toronto streets.  One time my Uber almost got hit by an idiot (the guy ran the red light almost hit the uber car and a father with two kids crossing the road).  I got the impression that the Uber guy may not have had the full insurance if an accident had happened.

At Princess Margaret Hospital the patient pick up is at the back of the hospital on Murray Street.  There is no GSP address.  I had to call the drivers, text the drivers.  They could not figure out the instructions  I repeated Daily:

 "Directly across from 60 Murray where the building overhangs the road, its a drive through which says Princess Margaret patient pick up and drop off".  

Uber  couldn't figure it out.  Most of them did circles around and around.  I  had to hobble with my cane out onto the street and look for them while we talked back and forth on cell phones.  Frustrating!

Now there are articles about women and Uber and that some men are driving Uber to scout out their next sexual assault victim.  Needless to say I deleted my account.

I signed up for Beck Taxi app.  Just like Uber you can order through your phone, you can message beck specific instructions and they email you the receipt to your email address with a pre-set up Visa account so you don't have to carry money or deal with little pieces of paper.  Easy for future tax returns.

• Beck Taxi has always picked me up at the door
• Beck Taxi has never misunderstood where the Princess Margaret patient pick up is.
• They have all the insurance.
• They are all good drivers in downtown Toronto traffic
• They know the streets, are confident
• They are okay with not talking to me.  

Beck taxi has a passenger pledge which states that they won't force me into conversation.  After radiation, and feeling nauseous and ill, I really am not up to talking (yes that's a miracle I know as I am a talker).  Uber drivers tell you there life story, how hard life is, and don't shut up!

In the end I did not feel safe with Uber.  They were very poor drivers, I questioned if some had the proper insurance, and they could not find me most of the time making me walk in circles looking for them.

I also think after doing some research it is unfair to the taxi industry.  Beck taxi has the same app, and same service as Uber.  Their taxis have to be 3 years old, inspected.  The taxi driver has to do a safety circle check  on their vehicle each day and fill out a CVOR.  They have commercial insurance.  They have a code of conduct, and they are good drivers (even the aggressive ones I felt safe with).  The city inspects them.  There are full police checks that are done by the company and confirmed by the city (not just emailed into Uber - these could be forgerized)

They should have the same rules for insurance, and police checks, and vehicle safety.  They should also be confident drivers.

So that is my rant for today.  I am now onto the Taxi side of the debate.

Journey continues

As this journey continues I have learned not to push myself too hard. I went grocery shopping earlier this week.  Sounds like a simple task.  It ended up feeling like I climbed Mount Everest,  Took 2 days to recover.

My spirits are good.  I feel happy, positive.

My body is doing weird things.  I am nauseous most of the time and can't face solid food except for my friend Dan's home made gluten free cheese bread.  Otherwise I am having Ensure and shakes made in the Bullet blender.  As someone whose vice in life has been food, not wanting to eat is an unusual experience.

My body likes to nap at unusual times.  Almost fell asleep in the uber taxi after treatment.

My mouth has a metallic taste so I also brush my teeth a lot.  My dentist would be proud.

I find that having access to cable T.V. Here has not improved my opinion of it.  I do have to say that the Property brothers are cute, so they are nice to watch.

I am kinda like my 86 year old Dad where I can all of a sudden nod off in front of the tv without any warning.  I am a crazy party girl now.

The radiation treatments are fine.  They don't hurt or anything.  Just the side effect of exhaustion.  Just like when you have a new born baby.

My hands shake as I type so please excuse any errors.

I don't find that I am too bored.  Lots and of reflection  time .  I fall asleep to my nightly meditation each night.

I am in the regent park area, every driver I have had has told me not to go out at night.  The streets are actually pretty quiet with little traffic noise in the evenings,

My thigh hurts.  Pain meds are good.

I have some emotional moments but overall I am keeping it together.  The emotion is either triggered by pain or worrying about my kids.  I think every Mom in this situation worries about her kids.  So I have a good cry now and again.  As the saying goes....better out than in.

I have many people checking in on me through Facebook and texting and email.  It is great to get so much support.  

I love being here in the condo as it gives me my own quiet retreat and reflective place where I don't have to worry about a schedule beyond my Radiation appointments.

I have had visitors too which is nice.  Everybody has been good with me having to lye down durning visits.

It's all good