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Having Cancer is like having a car.

I originally posted this to the Wellspring Blog, decided to repost again to my own… lazy maybe but whatever, its my words so I figure it belongs on my personal blog. I have altered it slightly to reflect the difference in the time since my original post.

Funny how the mind works in life and what you think about and when. I am by no means any sort of writer – but like most people, I guess I think I am clever with words from time to time. So here is my first foray into writing something that I think I would like to share with all of you.

I have breast cancer, I was diagnosed just under 2 years ago with a rarer, aggressive type (HER+, ER/PR-, IBC) but we caught it in time at Stage 3 and I went thru a solid year of fairly heavy treatment commencing with neoadjuvant chemotherapy, surgery and radiation and a targeted therapy. I had great results and I was hopeful that this was a one & done cancer experience. But, as it turns out, that was not to be my path.

My journey is now continuing with a tumor showing up in my brain… and now a full 3 weeks post brain surgery (unreal to even consider) I am just still collecting my thoughts and feelings and obviously resting to prep for the new battle ahead, to quote Shawn Mendez – it isn’t in my blood to give up.

So, when I talk with people that maybe don’t have any experience with cancer and they find out you have cancer, sometimes you get the person that says their polite I am so sorry, that must be so hard… etc. I think we know the general words. Let me be clear, I am not at all judging, I have been one of those people prior to my diagnosis – I get it. Its a super uncomfortable topic and what the heck do you really say to someone facing a life altering illness??

The other half of people that you share this news with, maybe some have limited or arms reach experience, what I mean is that they have someone they are close to but are not the primary caregiver nor have had cancer themselves. I find often with these people -and I know they are doing their best to be encouraging – their answers always seem to be along the variety of them trying to tell you how their cancer person is fine and therefore you will also beat this…

Me answering in my mind: “Greaaaat, that is amazing but not really what I have going on, thanks so much for your prognosis… “

Me outloud: “yes, they have made amazing advances in Cancer treatment. Thank you”

This version of answer happens more often than not, and again I am not judging at all but I also try to find humor in everything, even if it is only the wry humor.

At my daughters last band concert , I literally had a lovely lady tell me that her brother had exactly what I am going thru right now…EXACTLY the same thing. I am thinking “oh really, he had breast cancer 2 years ago and now they suspect it has spread a metastatic tumor to his brain. hmmmm…. Isn’t that interesting!” She is very educated gal, warm & kind and I have nothing but respect for her… most importantly she plays an important role in my daughter’s life and I know she was trying to be encouraging – I really do see that.

But, I am also pretty positive that if I had asked even 1 specific question (and I am just spit ballin here because brain cancer is all new to me!)  like “is it primary or secondary brain tumor?” – the blank look and confusion would have instantly washed over her face.

If I had to explain the disease of cancer to someone right now I would say having cancer is like having a car.  Let’s look at this, there are many cars on this planet. If I was asked to stand up and talk about myself and instead of cancer I was to say I have a car – no one would be satisfied with that answer because the simple word of “car” is such a vague description in the context of the world of vehicles. Details would be needed, what kind of car, is it an SUV, A truck, a compact, gas, electric, hybrid?  How big is it, which brand and which model… hopefully my little musing over this comparison is starting to spark some interest as you see where I am coming from.

I haven’t even brought up the age of the car, or how well was is maintained? Where are your driving this car – do we have a Lamborghini driving in rural Alberta on grid roads? Or do we possible have a motor bike in wintertime in K country.

That is cancer – even the same type of cancer is never the same, and unless you have been on this journey in an intimate way, it is so hard to even start to explain how complex it is to have and be treated for cancer. So I have decided that the next time I have to enter into one of those conversations, I think I am just going to begin with, I have cancer and I also have a car… both/either is so incredibly similar that if you want to know more, please think about all of cars in this world and let me know if you want to hear about my cancer diagnosis.

I choose to live well

As I was getting ready to head out to a Drs appt the today I had Spotify playing one of the many suggested playlists. I usually just have it play Taylor Swift since I am a little obsessed with her music right now… but I decided to walk on the wild side and set it to a country hits list. The first song was a Luke Bryant tune… and I like me some Luke B country and I got into the shower shakin’ it like a cowgirl, after-all, I am from Calgary 😉

However, when I got out of the shower Tim McGraws “Live like you were dying” was playing and for the first time, I actually absorbed the lyrics.

“He said
“I was in my early forties
With a lot of life before me
And a moment came that stopped me on a dime
I spent most of the next days
Looking at the x-rays
Talkin’ ’bout the options
And talkin’ ’bout sweet time”
I asked him
“When it sank in
That this might really be the real end
How’s it hit you
When you get that kind of news?
Man, what’d you do?”He said
“I went skydiving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named Fumanchu
And I loved deeper
And I spoke sweeter
And I gave forgiveness I’d been denying”
And he said
“Someday I hope you get the chance
To live like you were dying” ”

  • performed by Tim McGraw, Written by Tim Nichols and Craig Wiseman

Now, I am not sure if I am quite ready to go Sky Diving or ride anything other than a mechanical bull (on a super easy setting) but loving deeper, speaking sweeter and forgiveness. This song is right on the money.

I confess I was a busy – a – holic until I got sick; there is not a time I can remember in the past 20 years where I was not going a mile a minute trying to cram as much into a day as possible. I had pride that I could accomplish a ton of tasks, usually doing it on very little sleep – seriously though – how can you sleep when you have to worry about craming the next days tasks in??

I no longer have my super woman abilities to go a 100 miles/hour through each day… I am off the race track and in the playground zone. Sometimes I am frustrated with my lack of energy, when you spend most of your life being able to function at a certain pace, it is hard to adjust. Having said that, living in the playground zone has given me a whole new view. Maybe that is the wrong thing to say, really, the view has always been there, I just was never going slow enough to actually see it, and even if I did cacth a glimpse, I certainly never was still long enough to actually take it in as I was always too busy looking past the view into the horizon, worried about things and the what ifs in life.

Today I had the news that although my doctor was happy with how the left over tumor from my frontal lobe surgery had responded to Stereotactic radiosurgery, there is a new spot that has popped up which is likely another tumor starting to grow. Looks like I will likely have another brain surgery or SRS treatment in the near future.

It was hard to hear that news, honestly I was hoping to have a break in the cancer action. Not gonna lie, I spilled tears today and felt discouraged and tired.

After a soy latte, a good meal and some conversation with a great friend I feel better. I honestly do not know how much more time I have on this earth as I can’t control that…. I can control how I choose to spend my time though and I do plan to live my life well and fully. I owe it to my family, friends and most importantly, I owe it to myself.

So I plan to stay in the playground zone and enjoy the view for as long as I can.

Treena

Just keep swimmin!

I enjoy taking a Beach Break… and once I get the new beach shelter set up (need an engineering degree to do this) and set up my chair, all I really need to do is sit back and relax the afternoon away.

I am not a sun worshiper but I love the beach. The sounds, smells and light breeze are the perfect combination for relaxation. I like to dig my toes in the sand and just do nothing other than sit and enjoy the smell of the lake and feel the soft air on my face.

On my most recent beach day, there was a mom and 3 of her ducklings swimming along the shoreline right where the last wave breaks on the sand. The waves didn’t effect mom too much but the 3 little guys kept on getting swept into the breakpoint and would have to work hard to swim back over the breaking wave to stay behind mom and not get lost or left behind.

Life is like those waves, sometimes you just need to ride them and sometimes swim like crazy to stay on track. Most importantly to keep on track, don’t panic (or try not to) and don’t give up. Just keep swimmin!

Hotel California

Sorry it has been so long since my last post. I simply didn’t have it in me to write, I was tired physically, mentally and emotionally. It left me witless…

You would think that brain surgery would be a harder recovery than targeted brain radiation but apparently not in my case! I was cruising along thinking “I totally got this.”

Then I met the wall… the giant wall of radiation fatigue!

Besides sleeping for 3 days (my cats were so happy), my brain decided to take a little vacation from thinking and has been a little slow to get back on track: words, thoughts and sustained focus have been in short supply along with patience and humor! I am slowly coming around though!

One of the more frustrating elements of my cancer journey has been this stop and start, back and fourth business. Just when I think I am going to get into a new groove, something happens and I am back on the treadmill going absolutely nowhere or worse yet, doing the moonwalk… I may look like I am moving forward but in reality, I am going backwards.

My situation made me think of the lyrics to one of my favorite Eagles tunes, Hotel California… “you can check out any time you like, but you can never leave.”

Am I being a little mellow dramatic… maybe.

Feeling sorry for myself right now… perhaps.

Tired of not feeling at all like I used to before cancer rudely intruded into my life… hell ya.

I am usually a half glass full kinda gal! This rut has been a little harder for me to get out of but I am ready for the pity party to end… many people are in this cancer hotel with me. In fact, I think it’s over booked! The free breakfast is always running low and I can’t ever find a lounge chair by the pool!

Its summer, the sun is shining, flowers are blooming and the air smells fresh!

And, most importantly…

I am alive.

I am grateful.

Treena

Miracles &Heros

This post is probably one of the easiest and hardest to write. It is easy to write in the sense that reflection on this topic only makes me smile and maybe shed some happy tears. But what makes this post so hard is that as powerful as words can be, I am not sure if I can ever capture the extent of my feelings with mere grouping of letters on a computer screen but I am going to try…

When you are faced with an illness like Metastatic Breast Cancer, you realize that at the end of the day, friends and family are your riches. Throughout my journey, I have had what I like to call my GOD miracles:

1 – my cancer responding to the Chemo Therapy as well as it did

2 – getting the fabulous Dr A as my medical oncologist, she is the best

3 – finding the Wellspring program guide at Agape Hospice, it has been pivotal in my healing

4 – only having 1 Tumor in my brain and that it was a surgical candidate

5 – having no tumors in my body, and although I have told a few people this story already… it is worth writing:

When we were in the ER department already, the ER doctor had told us about my brain tumor and I was in an ER bed because we didn’t know if Medical oncology or Neuro Surgery was going to admit me. It was going to depend on the MRI which I was scheduled for, but had not yet had plus the CT results of my body scan. If the MRI confirmed that the tumor was too large to operate (which was how it looked on the CT scan), or if I had tumors anywhere else in my body, I would be admitted to Medical oncology as I would not be a candidate for surgery. Both Gerry and my mom were worried about the body CT scan and I was not… I had an overwhelming sense come over my entire body and mind and I KNEW, like to my core I KNEW that my body was going to come back clear. I said to to both of them ” I am not worried, GODS got this, it will come back clear.” and I passed my hand down over my body.

Those big miracles are nothing short of amazing and I am so grateful for them but these big miracles are not the ones that I consider the best and most important.

Miracles are abundant in our ordinary lives, I see them in the people who show up for you and your family in your time of need, both in words and deeds. My time in the hospital was rich with miracles: friends, family, business friends, nurses from TBCC and my doctors that all reached out to me, and my family in our time of need with love and support. I think these miracles have always been present; for me it took having Cancer to actually see them for what they are.

We have had many of these miracles from so many people over the past 2 years of this journey, it is so amazing to me how so many people have come again and again to help us out during the many times we needed the extra hand with prepared food, driving Reese, taking Reese for the night (or sometimes nights) for sleepovers, flowers, games, books, visits and just kindness. I am a huge fan of the whole marvel franchise but the heroes in the comics and movies pale in comparison to the heroes we have in our life and I have many heroes in mine.

My first and best Hero is my husband Gerry. He has always given me love, support and been my best friend… but in the face of this illness, he has also been an unwavering pillar of strength for me to lean on when I needed it most.

I know it might sound crazy to you but I am actually grateful to my Cancer, it has awakened me. More importantly, I have profound gratefulness for everyone I have been blessed with in my life. Thank you for showing me what Miracles and True Heroes look like.

Treena

Top 10 signs you might have a brain tumor in your frontal lobe.

I am paying a bit of homage to the late night great, Mr David Letterman. One of my favorite bits he did was his top 10 lists – they were always so full of wit and wry humor, which is my favorite kind of funny. Here is my list.

10 – you have a slight headache (but its spring so I usually have headaches)

9 – you start to make more typos in text and email (I am all thumbs and that damn autocorrect)

8 – you start to trip more and you have a nagging shoulder and arm injury that despite R.I.C.E. is getting worse (I am getting old)

7 – you can no longer drive in the cool position with only 1 hand on the steering wheel… you have to drive with both hands at 10 and 2 or you drift to the left (damn that shoulder injury)

6- you come to a full and complete stop at EVERY SINGLE green light despite that fact that you are telling yourself the whole time – “its green, keep driving, its green keep driving…” (my 13 year old will tell anyone who will listen what a terrible driver I was)

5 – despite full concentration and best efforts, you cannot walk through an open doorway without “THUMP” running into the wall and frame on the left side (ouch!)

4 – you find yourself laying on your kitchen floor wondering how you got there in the first place and musing to yourself that laying on a tile floor is not very comfortable on the back! (and when you get up you realize you have a goose egg & a black eye and you have bitten the hell out of your tounge… )

3 – your “injured” left leg that was causing you to trip slightly is now really weak and causes you to wipe out at Costco while grabbing cans of tuna because it longer seems to do what you want it to do, like pivot (this was the final straw for Gerry and he took me to the hospital)

2 – you go on a rant about how brutal some sports parents can be to deal with as a coach… in front of parents on a team you are currently coaching as well as one of your players (how embarassing)

1 – you actively engage in a twitter arguement with people who you do not know and mean nothing to you over a post that you would normaly read and move on… (clearly I should have gone that day and demanded a CT scan)

Seriously though, it is amazing to me now that I am able to reflect back on the weeks leading upto going into the hospital and recognize all of the little things I dismissed (and maybe even some big things) I now realize were symptoms of having a brain tumor.

From Cancer.net:

General symptoms include:

  • Headaches, which may be severe and worsen with activity or in the early morning
  • Seizures. People may experience different types of seizures. Certain drugs can help prevent or control them. Motor seizures, also called convulsions, are sudden involuntary movements of a person’s muscles. The different types of seizures and what they look like are listed below:
    • Myclonic
      • Single or multiple muscle twitches, jerks, spasms
    • Tonic-Clonic (Grand Mal)
      • Loss of consciousness and body tone, followed by twitching and relaxing muscles that are called contractions
      • Loss of control of body functions, such as loss of bladder control
      • May be a short 30-second period of no breathing and a person’s skin may turn a shade of blue, purple, gray, white, or green
      • After this type of seizure, a person may be sleepy and experience a headache, confusion, weakness, numbness, and sore muscles.
    • Sensory
      • Change in sensation, vision, smell, and/or hearing without losing consciousness
    • Complex partial
      • May cause a loss of awareness or a partial or total loss of consciousness
      • May be associated with repetitive, unintentional movements, such as twitching
  • Personality or memory changes
  • Nausea or vomiting
  • Fatigue
  • Drowsiness
  • Sleep problems
  • Memory problems
  • Changes in ability to walk or perform daily activities

Let me introduce myself…

Hello and welcome to my blog, my name is Treena and this is my blog. I am not a professional writer by any means! I am just a 46 year old woman, wife, mother, coach, friend, daughter, niece and sister. AND I am also a breast cancer patient, survivor, thriver and battler.

I am blogging to share my story with you, honestly I am not sure who, if anyone will read this, but I have decided to still write for myself first. I feel like my life story needs to be told, especially my last 2 years. Expect me to share my ups and downs, my musings which I usually find quite clever 😉

I will probably also share books I love, some art, and a bit about Wellspring, a cancer support centre here is Calgary where I spend a lot of time working on healing by body, mind and spirit.

I hope you find something in here of interest, help or even just amusing!

Cheers!

Treena