Our Angel 

image       Denise passed peacefully in her sleep early this morning surrounded by many of her family and close friends after a protracted battle with an aggressive strain of breast cancer resulting in multiple metastases. Please say a prayer that she finds comfort in being our newest Angel.
In preparation for her Celebration of Life to acknowledge the love and inspiration the she has spread throughout her life, and since many of her friends are far and wide across the globe, we will be accepting short videos (up to 3 minutes long). These can be shout-outs, anecdotes, spiritual readings, memories, kind words, short stories, etc. that we can share with family and friends at the event. Please submit them via email to ariana-macdonald@live.com.
More details regarding the Celebration of Life will follow once arrangements have made.
Thank you all for your continued love and support, let us all breathe a sigh of relief that she is no longer suffering.
Rest in Paradise, our beautiful angel.
Kirk, Ariana, Melissa, Travis, Nathan & Family

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Bonus Days

Bonus DaysI was told this week that these days I have at home are my ‘bonus days’, to which I was somewhat appalled. Is that really what it comes down to now? Bonus days? Perhaps I’m wrong in my thinking, but in looking on the positive side of things, there are many people who defy the odds and live another ten years and more! I have to admit, there are days when I say “just shoot me now”, but most days I would never consider thinking these are ‘bonus days’.

That being said, it is a busy household during these ‘bonus days’. They often start with the help of a Personal Support Worker (PSW). You can add into that, visits from: the Occupational Therapist (OT), the Physical Therapist (PT), Hospice, my Nurse, my Doctor, house-keeping and friends & family! Needless to say it is a busy place!

Our home now sports a new bed in the front room of the main floor (for convenient viewing), two walkers and a wheelchair (with interchangeable seat cushions) to help me get around and get into trouble again and three shiny commodes for luxurious bathroom living ;-).

As one can see, this is a little different than my previous, map-trodding days, but it IS better than living in the palliative care unit of the hospital, where it seems that everyone around me was ‘having the last of their bonus days’. I get to sit outside on the back deck and bask in the sunshine, take in the view of the garden flowers, listen to the birds sing to me (yes, they are singing just to me!), enjoy the new barbecue and truly delicious food once again and even have undisrupted sleeps.

Walk-in visitors have dissipated, which is good, as it has allowed me to schedule all of the workers coming into the house, as well as my visitors. Thus, that is the newest chapter in my life. I truly cherish each and every comment that you make on my posts, as they do provide a great deal of encouragement, love and strength. Thank you!

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Bustin’ Loose!

Time to get out of the hospital!

Time to get out of the hospital!

After 7 weeks of being admitted into  the hospital for what I thought was a badly pinched sciatica, I was released to go home.

Up to this point, I have surpassed all the medical experts’ expectations. I’m walking with a walker when the doctors didn’t even expect  me to move my feet. This was a result of radiation.

So tonight we are celebrating at home, enjoying the comforts of familiarity. It is 8pm and we are still awaiting delivery of my hospital bed, walker and other necessary equipment and I am hoping it will arrive soon – cuz I’m crashing already lol – big day for me!

Enjoy every moment in your life, as each one is special!

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The Real Question 

Guess I got the 'Boobie Prize

Guess I got the ‘Boobie Prize”!

The question that has not left my mind in the past month is this: How could this C have gone undetected for all this time?
The day before I received the last of eight rounds of the ‘dose-dense’ chemo,  I was told that I didn’t have to return for a check up for  six months. The oncologist stated that the cancer was considered to be “gone” and they only do further testing if there are symptoms – they don’t do the tests as a means of ‘checking’.

When I returned six months later, on April 9th, 2015, I was simply given a blood test and a manual breast exam, to which they said “all is good, we will see you in a year”. My response was somewhat disbelief, as I asked whether there were not more precise tests to confirm this ‘good news’. The oncologist responded by explaining that further tests were dependent upon the feeling of symptoms, that IF and WHEN I felt any abnormal symptoms, they would be happy to investigate further. There are no tests if there are no symptoms. Yippee!! Back to Panama I went to enjoy the sunshine.

When I felt a pinch in my back, and pains down my legs, the last thing I thought it would be was the big C! It was almost an exact month after that check-up appointment- on May 7th, that I had no use of my legs. Dr.Levy, (Coronado’s favourite doctor) as well as the Orthopedic Specialist that he works with, were both convinced it was a pinched sciatica. But since it didn’t appear to be getting better, back to Canada I went – just in case.

An ambulance picked me up from our house (in Peterborough, ON, CAN) in the wee hours of the morning on the 8th of May and from there the next step in my journey began.

I’m usually pretty good at finding the answers to questions. Yet I haven’t received an answer that makes logical to this one yet. Perhaps it is because I don’t have a ‘medical mind’, I’m not sure.

How can it be that you gave me a clean bill of health not just once, but twice – without having ANY tests done (other than a blood test). I was told I have a very aggressive type of cancer yet nothing was followed up with ANY tests.

The other nagging question is that I’ve had is how this C could continue to grow in spite of me undergoing ‘dose-dense’ chemo. Essentially I’ve been told that the current C that is in my lungs, etc. escaped the chemo. How does that happen? Why did the chemotherapy not kill the C?

It seems to me that this 50 year old woman may have had a better chance of at least dancing with the odds, if the scans had done as soon as I finished the chemotherapy and mastectomy surgery. Then another scan at 6 months and again at 1 year.

To me it seems like I won the boobie prize (YES punn intended!).

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Defying the Odds

Dorm Bath :-)

Has it really been a month since this surreal ‘dream’ started?  Tell me again that this is JUST a pinched sciatica nerve and that it WILL go away in just a few short days, like so many people assured me…… No, huh?

I received my diagnosis of Leptomeningeal Carcinomatosis (LC) on May 20th, 2015 – exactly ONE YEAR to the date that I had my double mastectomy surgery. How ironic is that? At the time of my return from Panama (May 18th), I had absolutely no use of my lower body and could not even wiggle my toes. I needed assistance for absolutely everything, but most especially going to the bathroom, moving myself even just a few inches on my bed – and pretty much most things that involved moving in any way. The first few nights that I woke up in the middle of the night after my diagnosis I went into full panic mode, as the echo of the doctor’s words reverberated in my head. 

Unlike a year ago, when I was diagnosed with Triple Negative Breast Cancer and I went research-crazy on the Internet, I haven’t googled LC more than a few times, as it appears that it all leads to the same path – a very unhopeful and short one. After about the fourth night of waking up, replaying my diagnosis in my mind, I decided to shut down those panic attacks, take the fear, and turn it into strength.  Now what I am doing is believing that I WILL be the one who will defy the odds

They told me right away that radiation was my only hope for potentially regaining any movement in my lower extremities, so I agreed to it right away. They explained there was about a 48-hour window for success and that they would be surprised, given the time that had already passed, if we would see much improvement . My first of five radiation treatments began the very next day from when it was recommended – on May 21st, with the final treatment being completed on the 27th. The purpose of the radiation treatments was to potentially shrink the tumours that have attached to and gotten within the membrane of the spinal cord. Within a very short period of time, radiation has surpassed what the doctors ever believed it would do to help me.

About two weeks ago, the radiation oncologist was shocked that could wiggle some toes slightly. Yesterday, I walked all the way around the hall using only my walker without stopping (yes I was accused of being just a little stubborn for refusing to rest part way)! My legs and lower extremities are getting stronger and stronger each day, although my feet are still prickly and ‘sleepy’ –  so I am constantly wiggling and rubbing them! Needless to say, the doctors are blown away with my newfound movement and abilities.

Today I had an amazing bath in the big soaker tub. The Turkish Bath Maid appeared to have sadly missed her shift, but my awesome student nurse, Emily was a pretty awesome stand-in. Photo credit above 😁. I have to say, it was an awesome experience and I’m feeling very spoiled with the amazing care I am receiving here!

I also got to have a hall pass today to go to my parents’ house to celebrate Father’s Day with my family, my sweet husband and a couple of great friends. Although I needed a couple of ‘naps on the spot’ it was awesome to escape the dorm room for the afternoon and experience more moments of ‘normal’.

I’ve been reminded by doctors that just because I’m regaining movement, it doesn’t mean the cancer is disappearing (they prefer to keep it real and I understand that). However what they don’t understand is that I’m not the kind of person who just listens and does what she’s told. I like to WIN. I like to be the one to defy the odds. 

I am not just sitting here waiting for it all to come crashing down around me. I am pushing hard with physiotherapy, trying alternative methods to kick this C and make it go away and intending to defy the odds which appear to be stacked quite high against me! Look out world – I’m not finished here yet!

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Finally I’m a Rotarian :-)!

Rotary Induction with Brenda Booth (left) Liz Lewis Woosey (right) & Teresa Cosentina (back) of the Peterborough-Kawartha Rotary Club.

Rotary Induction with Brenda Booth (left) Liz Lewis Woosey (right) & Teresa Cosentina (back) of the Peterborough-Kawartha Rotary Club.

Today was a very exciting day for me, as I became an Honorary Member of the Rotary Club of Playa Coronado :-), thanks to fellow rotarians in Peterborough, (Ontario, Canada).

I’ve been dancing around Rotary for a number of years now, having been to many meetings as a guest and even attending an international Rotary conference in Spain at one point. Now I am an official Rotarian and am very proud of that fact!

Having started a very unofficial little volunteer group in Panama called Volunteers in Panama about three and a half years ago, I began a wheelchair project with Sharina Jones, who was visiting Panama to see how to raise awareness for wheelchairs in the country. Cat Mandell had become friends with Sharina and her husband Grover and recognized the need for us to connect, and boy oh boy did we! However, the wheelchair project quickly became a large one and we were at a crossroads as to how to help it move forward.

Meanwhile, Jackie Kendziorek was talking about starting a Rotary Club in Coronado, Panama and I told her briefly about our project. Then came the big C diagnosis a year ago and I was then swept off my feet onto this new ‘journey’ and this different direction than I had planned for. When my girlfriends asked what they could do for me, I said “please help to bring this project to fruition and make it happen – get the wheelchairs to the people of Panama who need them”….and they did :-). They shared the details with Jackie, the Rotary Club of Playa Coronado was born and the Wheelchair Project was their first project. Wow, do they know how to get things done! Over 300 wheelchairs have been delivered to Panama and I was there to help distribute some of them – what an amazing and fulfilling feeling that was!

This morning we gathered in my hospital room: Brenda Booth, Teresa Cosentino, Liz Lewis Woosey all of the Rotary Club of Peterborough-Kawartha and my husband, Kirk Johnson. I was inducted as the first and only Honorary Member of the Rotary Club of Playa Coronado, given a pin for ‘Women in Rotary’ and a pin from the international conference in Sydney. We WhatsApp’d with Jackie, as she read me an emotional dedication that truly brought me to tears. It was beautiful – the whole thing.

Tomorrow will be the ONE YEAR birthday for the Rotary Club of Playa Coronado and I am so grateful and proud to say that I am now a member of this awesome club! The universe works in very interesting ways, as is it not amazing that I am now having to use a wheelchair to get around? I can only imagine the gratitude each recipient of those wheelchairs is feeling. The freedom it gives not only the user of the wheelchair, but the caregivers as well.

I am truly blessed. Thank you Jackie, Brenda, Liz, Teresa and everyone who made this happen!

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Paying it Forward – Make it Better for the NEXT Person!

Me receiving IV-Vitamin C last year from my naturopath, Brenda Tapp.

Me receiving IV-Vitamin C last year from my naturopath, Brenda Tapp.

During my ‘C journey’, which has essentially been the past year, there has definitely been a journey of varying sized ‘lumps’ (YES, Punn intended, lol) which have been encountered. It is these bumps in life, however, that are there for us to learn from. We must find a path past them and then go back and try to fix them in order to make it better for the next person. When I reflect back over these past fourteen months, I’m just thrilled with how the people around me have stepped in to help make things better for the next person who comes across ‘bumps’ like mine!

Last year, for example, when I realized how many women locally could not afford a wig, mastectomy bra, or other necessities after a breast cancer diagnosis, I mentioned this to my family. My sister Janet and her husband Rick stepped up and organized an amazing charity golf tournament. The proceeds from this tournament have already helped many grateful recipients and the tournament will be now be held annually. Stay tuned to hear about details soon!

Also last year, my sweet Dad witnessed the sad little wire semblance of a stand that he saw which came with my wig from the store and decided it was just not ‘cutting it’. So he handmade one for me on his lathe and I couldn’t believe how perfect it was! He took the idea back to his local Woodturning Guild and they declared it a local community charity project. Since then, they have proceeded over the past year to donate these gorgeous wig stands to My Left Breast as well as to the Canadian Cancer Society’s local Peterborough branch. This past week they did a news story on this project, which made me so incredibly proud! My Dad has taken this difficult event in life, to one where he can pay it forward to others in need:

One of the more recent of those next ‘lumps’ on this journey was the discovery that the ambulance gurney would not fit in the elevator of the condo where I was living in Panama! What an experience that was, being tightly strapped to a hard, flat board and tipped on an angle so that I would fit in the elevator. It was not exactly an experience that I would wish upon anyone! It has since become clearly apparent that this is not just an issue in Panama – it is worldwide! SINCE THEN, I’m thrilled to announce that Rob Brown of Neighbors Helping Neighbors in Panama, has ordered a Stryker 6252 Chair for one of the ambulances in Coronado. This way, if there is someone with a spinal cord ‘injury’ similar to mine, or for whom it is extremely painful for them to lay down for the initial transfer down the elevator, they could say they are in need of this. Needless to say I’m ECSTATIC about this and how quickly Rob jumped into action – way to go Rob and a HUGE thank you!

The most recent obstacle was here in the hospital in Peterborough. The discovery that the Green Stork can only transfer me from my bed to the gurney, but not always further, was a sad awakening. The gurney would then transport me from my room to where I need to go. In this case, I needed to go to the Radiation Bunker, which is directly across the hall from me. I quickly dubbed it the Torture Chamber  – not because the radiation itself hurt, but because of the pain it caused me from being moved the way I was.

Each time I went for radiation (five times),  it entailed using a ‘slider board’. WIth a slider board, they would slide me using a sheet and move me from the gurney to the slider board – which is a VERY HARD transfer board. Then I would be slid again from there across to the radiation table. These moves would trigger pain that lasted for hours. In addition, there is a ‘no lift policy’ in place within the Radiation unit, so no employee was allowed to lift a patient. Thus, my sister Brenda Warner lead the campaign and said, “well I am not under that policy and I can and WILL lift. This is my SISTER!” By the third treatment, some of Brenda’s nursing colleagues came over and bonded together to do the same 🙂 – help lift, rather than slide me from one table to another. This alleviated the main initial pain that would shoot down my back, spine, and legs for hours and days afterwards.Some colleagues joined her, and by my 5th radiation session, I had a group of protectors to make my transfers painless :-). The treatments themselves were painless, yet the tears streamed down my face due to the painful way I had to be transferred and how still, FLAT and hard the board was.

As a result of these transitions, and my sister and her colleagues standing up for ME, the hospital is looking into alternative ways to set patients up for radiation, patients who have spinal tumours such as mine, which cause so much pain when being moved.

Knowing that changes like the ones that have taken place locally, in Panama and anywhere really are being made for the better, just makes me know that we are doing awesome things – we are paying it forward! :-).  As the message on the wall in the photo states: Be the Change You Wish to See in the World!

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