In the Right Place

I was in the ENT Specialist office (ears, nose & throat) today for yet another opinion of why I have enlarged lymphatic tissue in my upper airway, a raspy voice, tremendous difficulty swallowing and a rawness when I breathe.  6 specialists share the reception and waiting area.

Sitting there, texting away, awaiting my appointment with the Otolaryngology – Neurotology Specialist (what child ever says "when I grow up I want to be an Otolaryngologist??? LOL  Well? ... wait.  When I was about 7 I decided I was going to be an Ornithologist ... until I learned it was a bird watcher - but it was a cool thing to say when I was 7).  I digress ...  I overheard the receptionist for the hearing Specialist gently ask an elderly gentleman "good morning Sir, are you here for your hearing test?".  The gentleman stood up, leaned in towards her and said "pardon?".   The receptionist replied "SIR. ARE. YOU. HERE. FOR. YOUR. HEARING. TEST?".  The man stood a little taller, cocked his head to one side, and said "WHAT?".   The receptionist reached for his elbow to guide him and said "right this way, Sir".   I think he was most definitely in the right place.  :)

So, here I am, I'm in another specialist office - for someone who has never been sick in my life, I sure have made up for it lately!  So far I've seen the head and neck cancer Oncologist, the speech pathologist, my own Radiation Oncologist, and now the Otolaryngology/Neurotogy Specialist (ENT for short!) about the nasal, and swallowing issues I have.  The BIG question is "are we dealing with a 2nd cancer here? or something else?".  No one seems to be able to definitively answer that question but they all seem to take great pleasure in guiding a lighted scope up my nose and down my throat ... and making me say strange sounds and swallow things!

The 2 oncologists say the same thing "yes, there is something wrong with the lymphatic tissue but it doesn't look like a cancer".  The speech pathologist says that my vocal cords are slightly impaired by the lymphatic enlargement in my throat.  The ENT specialist says "yes, there is strange enlargement of the lymphatic tissues but also can't see a cancer of the upper airway." So ... what next?  Well, now it's time for another CT scan of my sinuses to ensure there is no cancer there and to see if there is any info there to help answer the questions.

The most common thinking is that this is most likely a combination of old injuries (when my face was crushed by a drunk driver and then reconstructed) and allergies.   The ENT specialist thinks that because I'm allergic to antibiotics that I'm also allergic to mold and most likely dust mites, too and that the dry climate of Calgary may be drying out my nasal function.   Air-born allergies. This would account for why I can't breathe and I cough constantly back East in the humidity and why I'm so dried out in Calgary.   AIR.  That's my problem.  So, it seems like all I have to do now is to find a planet to live on where there is no air!! Any suggestions?   :)

Next stop - Allergy specialist.

I don't know how things work elsewhere, but I'm amazed with the Canadian Cancer Society and the Canadian Healthcare system because once you are diagnosed with cancer, you seem to automatically get immediate attention for any other issues.   I saw this with my mother and her breast cancer a dozen years ago and now with myself.   They all bend over backwards to seek answers for me and to get me the tests and specialists I need - the most time I've waited to see a specialist is about 10 days ... and they apologize for the "wait".   Such amazing people. 

Again, I'm pretty confident that there is no additional cancer but it's very reassuring to get all possible tests and opinions to be absolutely certain.   Kind of like the elderly man and hearing test ...  I'm in exactly the right place (if only I could find some "non air" to breathe!).   :)

Things I've Learned that I Never Knew I Needed to Know

 This journey has been fast and furious but I really have learned a lot along the way ...  

• Daytime TV really sucks!   (Please let me get better soon so I don't ever have to be subjected to this drivel again!). Pretty please.  :(
• Ice cream is good - if it's the only food that you can digest.  And I could well be the ONLY person in the history of cacner treatment to not lose a %$#@$ ounce of weight during treatment.  Dammit!  I gained 5 lbs to go into this thing and NOW, on top of everything else, I have to lose these 5 lbs.  LOL  Isn't it ironic??  ;)
• A person can survive without vegetables (and wine!) - but certainly NOT happily. :(
• I can, in fact, choke down a bowl of oatmeal everyday - but only if it's heaped with brown sugar.  
• Just because popcorn (at the movie theater) smells good doesn't make it a good idea to actually eat it. 
• Dogs are incredible therapy ... even if they hog the bed! :)
• That I can blog from the bathtub - but you probably didn't want to know that!
• That it is possible to spend 3 hrs per day in the bathtub and not get wrinkly. (how can that be??).  And the Kindle is great for reading in the tub ... no pages to get wet. 
• That Shaelen (my beloved, borrowed daughter and university student extraordinaire!) CAN, in fact, cook! (but only with Gordon Ramsey (me!) to gently(?) guide her.  ;)
• I learned that I have enough self-restraint and good sense (huh?? me??! no way!) to NOT jump on the trampoline with a bunch of kids at a birthday party ...  that's just for now!  Next time I'll be in the thick of it all.  :) 
• I can survive the lethal combination of being both blonde and having chemo brain (at least I think I've survived!)  But it does give me 2 great excuses for being ditsy now.  :)
• One of the most important things I have learned is that it's ok to be selfish every once in a while ("now" turned out to be a good time to practice!) -- and it's not my responsibility to solve other people's issues - especially when I am sick.  
• That the "Big C" is horribly scary and very lonely - but it doesn't have to be the death sentence we all fear. Hope, tenacity and shear will power can get you through it ... with a healthy dose of wacky humour thrown in for good measure.   :)
• That healthcare workers are some of the MOST special people in the world.  Truly unsung heros.  So, now I shall sing for them ... close your ears! 
• That so much of stress and worry are manufactured by us - and are such incredibly unhealthy states for us to live in.   I vow to continue to shed stress from my life and to live a little more in the beauty of "now" and a little less in the stress of now - for the hopes of tomorrow.  
• That it is possible to get through the worst things in your life ... when you have such incredible friends in your life to help you see that life is truly worth living!  Thank you - to all of my friends who have believed in, and supported me, through this horrible ordeal.   I owe so much of the success of this to YOU!  

I never intended to share my illness with so many but I'm glad that I did.  I KNOW I derived a lot of positive energy from my friends and I hope you gained some insights and optimism into the path to beating cancer.   Sadly, nearly 50% of us will be struck by this disease in our lifetimes ...  together we can get through it.  I KNOW we can!   Post-cancer Lori "knows" it.  :)  

The View from the Top

Well, I've reached the summit of this climb - thanks to all of my friends and sherpas helping me, and coaching me, along the way!  :)    It's time to part company with my alter-ego "Foam Lori" but it's also time to rest here at the top for awhile before getting the "all clear" on the path ahead.  

It's wild to think about how quickly the past few months have gone by and it's anguishing to stop and realize how much I've gone through during that time.  The upside to all of this is the realization of how wonderful life is and how many amazing people there are in this world - and how many of those have touched my life.  I am truly blessed. 

I can't thank my friend Jorinda enough for coming with me to my final day of treatment.  It's funny  - they (my medical team) continued to tell me that I'd be in a lot of pain and not able to transport myself to treatment in the final weeks so I organized a few friends to be on "stand by" for those days I wasn't able to get myself to treatment and they were a little disappointed that I never called them in to action.  How wonderful is that??    But I was so thankful to not go to my last treatment alone. :) 

This is my radiation team extraordinaire -  Lisa, Diane (in back) and Mark.   All of the people at the Tom Baker Cancer Centre have been utterly amazing and all so generous with their support, kindness and help.  I am truly impressed and so grateful for their kindness and expertise.  (I don't think I look like someone who has just had 6 weeks of massive pelvic radiation & chemo, do I??  :)  )

Foam Lori - her final day of employment.  From here she was taken back to the "simulation" room to be repurposed and reshaped into another body.  It was a tearful good-bye as they wheeled her away.   :(

Now I just have to battle the exhaustion, radiation burns and GI issues for the next few weeks and then full-fledged recovery begins.  April 22nd is the first of the "look see" appointments with my surgeon and oncologist to make sure the cancer is gone and hasn't spread.  THEN the beginning of the "rest of my life" powers up into full force! 

I've been too tired to write much in the past few days but I will get back to writing more about this in the coming weeks but I truly can't find words to express my thanks to all of you who continue to support, encourage and believe in me.  Friends truly are the best!  

Hooray for Allergies!!

Last week was a whirlwind!  Very stressful - but I made it though. 

Meetings with my oncologists, and more throat studies - it now looks like my throat issues are more generalized that a cancerous mass and is more likely to be caused by some autoimmune issue (such as allergies, or other).  But my Oncologist reassured me that while there is certainly an issue with the whole lymphatic area in my neck and throat, she felt that is was highly unlikely to be a cancer.

More tests with the ENT surgeon and pulmonary functions in the next few weeks and we'll watch it closely but ... yippee!  No more cancer. Whew!!  What a tremendous relief.  :)




Thanks for the positive thoughts and tremendous power everyone is sending my way.  It's working!

Saying "good bye" to cancer treatments forever!

My Second Last Day: 

One of the last few times to snuggle with "Foam Lori".    The past 6 weeks have flown by and I will truly miss the RT team:  (regulars)  Lisa, Mark, Shannon, Diane, Karen and all of the other people in the dept who have had such a positive affect on my life recently.  Thanks to you all! 

Saying Good bye to 'Foam Lori" ... she leaves from here to find some altered state to help someone else beat cancer in the future.   Go "Foam Lori"! 

Victory!  I'm still wearing skinny jeans at the end - when they told me I'd have to wear Muu-muu's. Ha!  No way.  ;) 

PS:  Foam Lori has a fat ass, a square head and ... she's taller than me.  It's really time for her to GO!  :)

Treatments and Tribulations

They tell me that the majority of patients get bad side-effects simply because they believe they are going to get them.   Shannon (radiation therapist) said "and then there's the less than 1% like you, who are so strong willed (who me??) that they refuse to get most of the side effects".   First, who ever said I was strong willed??!   (D'oh, busted!) and secondly, who said this was easy on me?  Sleeping is so difficult when every time you move skin rips off.  I have so much skin peeling off in the radiation zone right now that I'm tempted to keep it all and make a pair of shoes ... or maybe a belt.  ;)   

My friend Deb just pointed out that "Hey, rich ol' broads pay big bucks to have a peel done on their faces.  Too bad yours is on your ass where no one can see it when it heals with all that nice, new, smooth skin!!!!!"  thanks Deb!  I LOVE friends like you.  :)

Here are some photos from my radiation treatment.  (Mark has promised me some more detailed descriptions but I'll update with those later.) 

The Radiation Machine:  Lisa (she shaves her head for her patients) and Karen are getting me (and "foam Lori") positioned perfectly for radiation. It almost takes longer to get the positioning set up perfectly than the treatment itself takes.  Apparently, radiation has eaten my eyes out!

 

The Control Room:  2 CCTV monitors (to see if I freak out or something on the table and try to escape!), images of my pelvic skeleton (to ensure perfect alignment for each treatment), the radiation field images and the dose input screens (as defined for each of the 14 radiation dose "fractions").

 

A close up of one of the radiation fields.  The IMRT technology allows for the highest doses of radiation to be applied directly to the target zone, without allowing too much "scatter" damage to other areas.

An image of how the radiation field overlays on my pelvic region.   It looks like my hips are "excellent" !

It's not all Sunshine and Roses (or mountains) ..

Sadly, the victory party might be on hold for awhile.  Late breaking news ...   more tests are required to make sure there isn't a 2nd related cancer.   Tests this week gave some good(ish) news but also sparked some additional follow up tests to rule things out completely.   Stay tuned - and send LOTS of positive thoughts.  They help so much!    ~ Thanks

I'd kill for a plate of sauteed vegetables!

Week #5 is OVER!!

It's been a very long week and I've been bottling up as much energy as possible to reward myself with a trip to the Mountains with Rhonda and some friends.  Success!!  I wasn't able to do a full-fledged hike but we did get to the mountains and had a great trek across Lake Minnewanka - in glorious weather.  :)  It was a great day to be alive!

 Laura, me, Rhonda, Elissa - Lake Minnewanka, Banff, AB

My goal for the week became "rest up enough and store enough energy to go to the mountains on Saturday".  This was a daunting task when on Monday, I was barely able to muster up enough energy to get to radiation treatment and then come home to sleep again - how on earth would I get to the mountains and do a hike by Saturday??   But I've learned that shear determination will bring you whatever results you truly desire.

First, about the week just passed ...

This was the week the exhaustion arrived.   It hit me like a brick wall.   One minute I was accepting a lunch invitation for sushi and the next I was flat on the floor and barely able to get up.   I was a long distance runner in high school and university and I had hit my "wall" many times but this one has sent me flying (or failing!) in a way that I had never expected.  I desperately wanted to go out and "do" things - but where the mind was willing, the body was weak.   The weather has been stunningly wonderful and it's been a shame to have to be inside "resting".  Ugh.  Being sick SUCKS!

I live up on top of an escarpment, in a lovely, older, wooded subdivision of Calgary.   I'm next to a very large riverside park and trail system and huge off-leash dog area.  It's a very quiet neighbourhood and, for the 6 weeks of the year that the leaves are on the trees, it's very pretty.

Shae has decided that I should be in a wheelchair.  How sweet and caring of her!  Of course, I'd be flattered if she said that because she was looking out for my well-being  - but NOoooo ... she said she thinks it would just be a lot of FUN to push me around and then let me GO down the hills of that escarpment. :D   (wow, she acts likes she's my real daughter and not just a borrowed one). 

They continue to tell me that the bad weeks lay ahead.   I continue to tell them that side-effects are for other people.  ;)   But I now fully understand that vegetables are NOT my friend and the consumption of such shall result in immediate and severe repercussions!  As someone who has lived more on vegetables than any other foods my entire life - this is SO hard!  I would kill for a plate of lightly sauteed, el dente, vegetables - served on a bed of wilted spinach (ahhh, the memories!) - but I know they would surely kill me first!!  :(  Until then, I survive on oatmeal (blecch), ice cream and white rice.  How lovely.  LOL

"Forget Injuries, Never Forget Kindnesses." ~ Confucious

First, let me apologise for the graphic nature of the last post.   I truly found it shocking that some people took my stoicism as meaning both my illness and my treatment were no big deal.   It was a bit of a rant from me but far better to let that stuff out and move on, than it is to keep it in and have it negatively impact my health.   Thanks for bearing with me.

I'm a little behind on a lot of things as I seem to have an overwhelming central focus on my own life at the moment, but know that once I'm past all of this, I will be back ... with a vengeance!!  I promise.   :)   (in a good way, of course!) ;)

Thank you to everyone who keeps in touch and keeps me in your thoughts and prayers.  It all really helps!  I'm overwhelmed by your cards, emails, phone calls and comments.  (PS:  it's ok to comment on the blog if you wish)  - you are amazing and I SO appreciate it!   Your words, thoughts and acts of kindnesses will be in my heart forever and are helping me survive and grow through this time.

Some of the wonderful, random acts of kindness: 

Hugs from Deb!

Special words and thoughts from MaryAnn and Kaye!

"card of the day" award goes to Sarah! But I've never met this guy in any of my hospital visits! :(

Cards, cards, cards ....

Cards! ...

and MORE cards!  :)