"Uh OH! ... that's not good"

My good friend Simon vowed to shave his head in a show of support for what I am going through ... I couldn't resist helping him achieve it!  :)   ~photos by his son 5 yr old Sam Orrell.  

"Uh OH! ... that's not good" ... as quoted by 2.5 yr old Max Orrell upon seeing his dad, Simon, sporting a new shaved down look.  :)  

Are you SURE you want me to do this??

OMG!  I can't believe he let me do this!  I guess there is no turning back now. :)

It feels like velvet!

"how does  it look?' ... ahhhhhhhhhhhhhhhhh!!!!

Sam - the amazing photographer!

Thank you so much Simon - What a friend!!

OMG!  That was funny but stressful ... I NEED wine!  :)

Jan 28th Update: What a week!

Thanks to everyone for your notes and well wishes.  It’s very odd to be in a position of being sick and wanting to tough it out on my own ... but knowing that the power of sharing it with others can be so amazingly positive.   I truly appreciate that I can share this with you.  

That said, I don’t know what you guys are doing ... but PLEASE keep doing it!  It’s working! 
Paula and Ted - thanks so much for the "margi's in the mail" I couldn't have asked for a better surprise - at a better time! :)

I’ve never been a strong believer in the thinking that “things are meant to be”, “things happen for a reason” and other trivial platitudes and cliches used to justify a bad situation, but today I’m a bit of a "new" believer.  

I digress ... but will come back to that. 

This week I met with the oncologists to discuss my final treatment plan and the new results from additional tests.  After bouncing my thoughts off Lin on the weekend, I spent the evening before this meeting discussing my questions with my former doctor/friend Brian and got solid on both my frame of mind and how to structure my questions.  (Have I mentioned that I’m the luckiest person in the world because of the people who grace my life??)  

The medical oncologist (Dr Wong) spent 1.5 hrs with Tammy & I and entertained even all of my silliest questions (I’ll bet I’m the only person in the world who has had a discussion with an oncologist that resulted in his suggesting I eat a marshmallow!).   The only really important thing in a doctor is his/her experience with your specific problem and their personal outcomes or success ratio.  Many people want bedside manner to be the ultimate skill of a doctor but I frankly just care about how good they are.   I was warned that Dr Wong could be a little cold and impersonal and I was prepared for that ... but I found him to be anything but that!  He was thorough, helpful, warm and engaging.   Maybe it’s because I’ve researched this thing to death and, the Lori that is me, tends to over-analyze things and dig into the minutia of a problem so I can back it all out and then solve it at a higher level.   What can I say? Old habits die very hard!  :) 

So, Dr Wong.  I asked him how much experience he has had with this specific cancer.   This is a rare cancer and most docs will have never seen a case of it in their careers.   He shocked me when he said “over 150 cases in the past 25 yrs”.  He has typically seen 6 – 7 cases for each of the past 25 yrs.  Most specialists in this cancer won’t have seen 6 – 7 cases ever!   How on earth did I manage to get a rare cancer and have the leading specialist for it practicing 10 mins from my house ... and I was diagnosed 3 days before moving to Peru???   Add to that the catastrophe in Peru right now (as a friend said “I think ass cancer might have saved your ASS!”.

Ok, I’ll admit it ... maybe some things are “just meant to be”.  :)

There was lots of good news on this day.   

• Dr Wong was able to secure my needed supply of the chemo drug that is in worldwide shortage.   This means that I will get the standard protocol for this with a fairly good prognosis.   (there is an >60% 5-yr survival but a 40+% chance it will recur in the next 2 yrs ... but that means a 60% chance that it won’t!)  Those are the global stats for this cancer but his rates are much better than that – this is the real benefit of having an expert in your disease – the intuitive knowledge that leads to much better outcomes.         
• My latest MRI results show that the cancer has not yet spread to the lymph nodes!   
• I was officially downgraded to a Grade 2 (T2N0M0).  This doesn’t change the treatment but it certainly changes the prognosis.         
• The area they thought was local spread of the tumour was simply inflammation from the surgery!  Yippee!   This means that surgery effectively made me cancer-free and the treatments, while absolutely necessary, are just really insurance to make sure the cancer is eradicated at the microscopic level. 

This means Graffiti was right!  (see details in the sidebar). 

Chemo and radiation are going to be a BEAR!  ... but with help and support from you - my friends -  it’s going to be bearable.  :D  (sorry bad jokes prevail!). 

I have built my project plan to beat this (you should see the “war room” in my office!) and I am focusing on the little bits of happiness that happen each day.    Check back on the sidebar of the blog to see them daily ... 

In the words of Dr. Wong, “talk to your body – don’t let your body talk to you!”   That’s easy ... if I’d been listening to my body over the years, I would NEVER be where I am today.  :)  This is just like hiking a mountain ... it can get really tough physically but your mind can always over-rule your body and you can always reach the top!   Look out TOP – we’re having a party when I get there!   Who’s bringing the wine?? 

See you at the TOP!  

~ Lori

Jan 18th Update - the journey into the unknown begins ...

I’ve been busy with doctor’s appointments, tests, a quick R&R trip to Palm Springs (to recharge my batteries and get some friend hugs!) and then my mother and sister-in-law flew over for a surprise visit this past weekend (my first family visitors!) so I haven’t really kept up with anyone for a few weeks.   I’m sorry but I am doing ok for now.  I am trying to do as much fun stuff while I'm still able to and trying my best to enjoy each day.  :)

Finally, I am getting some news and a treatment plan.  It’s been a stressful few weeks since surgery and I would highly recommend against getting cancer at Christmas!   I seem to have fallen into a perfect storm of how, and when, not to get cancer.   Leave it to me!  Oy.   (especially since I was only a few days away from moving to South America when I had the surgery and had to backtrack on all of my plans). 

Lots of diagnostic MRI’s, CT scans and other tests have determined that my cancer is a late Stage 2/T3 - this means it’s a large tumor but only locally invasive (it has spread locally and they cannot remove it all with surgery)– it doesn’t appear to have metastasized to anywhere else.  But as much as it is a rather rare cancer, it does have a standard, rather successful treatment protocol.   Sadly, one of the drugs for the chemotherapy (Mitomycin-C) is in worldwide, production shortage status and I am trying to find a supply to secure for my own use but not sure if this will be doable and my oncologist is searching for alternatives.

Last week, they made a foam cast (mold) of my body ... I think this is so they can simply pour a new Lori if the need arises (Seinfeld had "Fusilli Jerry" and I have “Foam Lori”!) but they assure me it is so I will be in the exact same position for radiation every day.  They also tattoo’d me so they can pinpoint the exact location.   The tattoos are 3 simple dots (nothing exciting) but they are in the shape of the “therefore” symbol ... so if Prince can change his name to the male/female symbol, then I want to forever be known as the “therefore” symbol! I am Therefore - therefore, I AM!  :)

The planning and scheduling of 6 weeks of daily, concurrent chemo and radiation is taking some time (especially with the drug shortage) but I have a final planning meeting with my 2 oncologists on jan26 and treatment should start on Feb2.  Ground Hog Day.  How appropriate!  LOL ... both from the movie perspective but also from the point that I will have 6 more weeks of “winter” before the spring of my life can begin again.  

I’ve been told (by my mom) that I joke around too much about this and that my situation is very serious but people won’t realize that if I continually joke about it that I am really in the fight for my life and that I really do need my friends and family to think about me and keep in contact.   My main defense mechanism in life is humour and if I can laugh in the face of adversity, I will.  But honestly, right now, I really do need to know that people care ... so I thank you for staying in touch and helping me through the dark days ahead.  

My biggest fear is managing to keep my weight and energy levels up so, I have ordered a food service and other friends are cooking and freezing dinners for me (thanks Simon and Naomi!).   Thus, I think that piece is solved.   My other fear is to lose my level of fitness and to feel housebound and lazy.   I had a friend bring me over some exercise equipment the other day and other friends who live close by have offered to get me out to interact with others and simply to get some “human contact”.   My friends are scattered around the world, so it’s easy to feel isolated and alone but my group of local friends has really helped and I am getting a new found respect/perspective of Calgary.  My friends around the world keep my spirits up with calls, emails, prayers, good wishes and cards.  Thank you!  (thank you also for keeping this off facebook as I have many friends/business colleagues on there who are unaware of my situation. )

Graffiti is getting back to his health and he’s a tremendous comfort to have around. He really is a good boy and seems to have an insight into my illness that is rather uncanny. 

So, that is about all for now until the big meeting on Jan 26^th ... until then, thank you all for your caring and concern. I really appreciate it!

~love Lori

The New Journey (my new mountain to climb)

Well, my plans to spend the next 6 months back in Peru have been thwarted by a bit of bad luck.

On Dec 10, 2009 I had surgery to remove a mass from my colon and the biopsy confirmed the worst ...  invasive Squamous Cell Carcinoma.  This is a relatively rare cancer and I am doing all I can to learn about it ... and beat it.  Kick ass cancer in the ass!

You can now follow me on this new journey that will take me to some exotic places ... but far different from the wilds of Peru!  I will try to update this as often as possible 1) to keep people updated on my progress but 2) and more importantly, to keep myself sane and get my thoughts out in a constructive, cathartic way.  

To all of my friends and family who are so supportive of me through this - I can't thank you enough!

~love Lori

PS: you can read some of my adventures in Peru from April 2009 below
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