November 26, 2018

Sometimes it is hard to believe its been a year.  Zoey and I spent Monday in Canmore watching the sunrise and hiking Heing's walk.  I continue to work on my startup, advocating for lung cancer and changes to our healthcare. I spent the first few months of the year visiting friends and family across the country and having a bit of an adventure too. I was driving to Steinbach, MB when the transmission broke down on Heing's protege near Swift Current, SK...that is the middle of nowhere! I was able to drive to my friends parents house in Moose Jaw (Thanks SS). Sadly, I gave the car to the auto wreckers. That car was a vehicle for great memories. I spent the Fall, attending or presenting at healthcare conferences including the World conference on Lung Cancer. I met others going through the same experience. I felt connected, they understood.

 Here's some life lessons that have meaning for me. The full list is here: blog

Life is short. Live like you mean it.

Chasing After The Highest Paid Position is Pointless. Service to Others Is The Highest Calling

Take A Sabbatical. Rediscover the Real You.

Ignore the Naysayers. Its Your Life to Live.

See Each Setback as a Gift.

Don’t Compare Yourself To Others.

Meditate on Your Mortality.

Mentorship is Absolutely Essential to Make the World A Better Place. Become a Mentor.

 Sunrise in Canmore, AB

Celebration of Life, April 28/29 2018

Dear friends and family:

Last weekend we made space to celebrate Heing’s time with us. Spring did arrive in Calgary and we had a great walk in Canmore on Saturday. We walked along the Bow river, a path Heing , Zoey and I often did. Family in Windsor and Michigan went on a walk in her honour too.

On Sunday we had a gathering at a friends place. Her paintings, “Heing made” cards, photos and crochet items made for littles were were on display. Food was an assortment of dishes from around the world to reflect her love to travel.  Thank you all for making this happen celebration beautiful.

I read one of Heing’s last journal entries:

..I know that someday I will see you all again, when it's time. Reassure them that I lived a full life. I am who I am because of my family, you and my friends. Thank you to infinity and beyond. I will be watching over you all.

The celebration moves me and others closure to closure. Her preference was a celebration of life and to welcome everyone.  One of her wishes was to contribute to lung cancer research through the Glans-Look Lung Cancer research program in Calgary; Lung Cancer Canada or a charity of your choice.  Friends and family raised $4,223 toward the Glans-Look lung cancer program. The research focuses on precision-oncology and targeted drugs. Of the four lines of treatments, the two targeted drugs worked the best for Heing. It allowed us to travel, gave her energy to be with friends and enjoy what most important to her in life. I am honoured to speak at the Glans-Look research Day next week on a caregiver perspective to precision-oncology.

Friends and I will continue her calling to raise awareness of lung cancer and the need for research. Melissa, Sidd, Chris and I are cycling for The Ride to Conquer Cancer, a 200km, 2day cycle. Our team: Hanging onto Hope is in memory of Heing. My training starts tomorrow :)


With love and gratitude,
Shaneel

  

Mountain view from our walk

Some of the family and friends on the walk in Calgary

Family on a walk in celebration

Louie and Brother

HT made her presence around the wold. See the red dots.

  

 

Quotes of inspiration on World Cancer day, February 4th, 2018

For those who have cancer, caring for someone with cancer or know someone with cancer, I like to give you H's inspirational quotes. May these quotes make you present and fill your heart with gratitude.

“Find what it is you want to do, and do it. Always trust yourself” (Coffee & Kung Fu)

“Every life is shaped by unforeseen incidents and chance encounters”

(David Eskerly , The Lost Evening)

“The use of time is fate”

(David Eskerly)

“When you worry, you’re wishing for things you don’t want”

“Somewhere I read of a study that identified not optimism or happiness or serenity or sociability as physiological traits most predictive of longevity; but a more homespun one, conscientiousness”

(David Eskerly) 

“The nearness of death exalts life”

(Italian saying as per Marilyn Brant)

“In the presence of nature, a wild delight runs through the man, in spite of real sorrows”

(Ralph Waldo Emerson)

“The scars I have remind me that I am a survivor”

(Heing Taing)

Heing, 1976-2017

I have mixed feeling since Heing passed away on November 26th. I am filled sadness, relief, emptiness, freedom.  She died at Foothills Medical Centre, in Calgary. She was supported by wonderful staff, family and friends. 

Cancer is a game of chess. Sometimes you don't know your move was the best. Other times, you are riding high.   We played this dance for over 4 years and had a good run. During her last days, she said she had a good life, grateful that we could travel, live near mountains, visit family and friends and see our puppy grow. Now, all she asked was to be in solitude with me.

I continued to swab her mouth with a sponge soaked in club soda , dropped ice pellets in her mouth to keep her moist, kept a cold cloth on her forehead to keep her cool, wiped her feet with a moist towel. I learned the pattern of steroid withdrawal but this time it was different. We stopped Tagrisso, a drug that worked so well for 14 months but also the last possible variable for the sudden platelet drop.  Cancer vs. body. Her soul was strong;  her mind rich in wisdom, awareness and gratitude but her vehicle weak.

The O2 air was dry and the winter air in Calgary didn't help. At times, she would wake up gasping for air, I would call the nurse and ask for a breakthrough of fentanyl. Heing would glance at me, lean over and rest her head on my chest.  No need for that now, as the IV of drugs would trickle in and  keep her comfortable. A fine balance of comfort vs. nausea,  hydration vs. fluid build up in her lungs.  There was no need for her to speak, my intuition was strong. Her body talked to me, I understood her.
 
I put her meditation music on repeat, sat cross legged and was present. I saw her breathing become more shallow as the night descended on us.  The nurses and I would reposition her quiet body to prevent discomfort. Her face grimaced and a rush of emotion came over me.  I became protective and short with the nurses only to ground myself with her words - everyone is trying their best. Her bent leg was straight, slouched chest opened, expression of comfort returned. I apologized and thanked them.

 She asked to be in comfort for her last days, in solitude with me there. The palliative doctors and nurses on Unit 47 of Foothills medical center were wonderful. Coaching us, ensuring an empowered, self determined girl remains so until the end. She heard her family express their love but she lay silent, free of pain. 

As the sun rose, the warm glow reflected off her. I whispered my gratitude, thanked her for journey,  asked for her forgiveness for the hurt I caused in this and past lifetimes and forgave her for the hurt she caused me. The door opened and Dr. D walked in. The universe new the support I needed when I needed it. Dr. D checked her vitals , nurse G double checked. Dr. D and I looked at each other. She didn't have to say anything. I knew, peace is upon her. She did everything she could with what she was given.

I end with these words of wisdom. 

Suffering makes you preset. 

Being present makes you aware. 

Awareness gives you gratitude. 

Heing had gratitude for the life she lived. 

Let us honor her for living authentically and believe her energy is still here, just in a different form. 

With gratitude,
her loving husband,

Shaneel

Back in the Hospital

So here I am again. Here's a quick update.

After I completed 8 rounds of radiation treatments, I got more and more short of breath and fatigued. They found out my red blood cells had dropped enough that I could get a blood transfusion. At this point, I had to be wheelchaired everywhere. I easily became short of breath doing the simplest things. I went into coughing fits in the middle of the night just trying to catch my breath. All this concerned the oncologist. When I arrived for the prearranged blood transfusion, the nurse immediately put me on oxygen. What a relief! I breathed so much more comfortably then. Unfortunately, the blood transfusion gave me more energy but did not make my breathing easier. We reviewed the latest CT scan with the oncologist. The news was devastating :(. I have indeed progressed extensively in both my lungs. There's evidence of emboli in my kidneys and inferior vena cava, which made everyone nervous of blood clots.  I was admitted into the hospital immediately because it was too risky to go home. 

I've been here 4 days now and they don't know when I can go home. They started anticoagulation treatment only to find out my platelets are now also tanking. So now we wait. I may need a platelet transfusion. If the platelets come back up they will start me on prophylactic anticoagulants. If platelets come up even further, we can finally move on to the next treatment. Whatever that will be? We are researching options as we wait for platelets to recover. Thank goodness I have a great caregiver (hubby) and very helpful brother to support me. Thanks to everyone to have offered to help. Thanks to visitors who have distracted me from the darkness that sometimes descends on me. I hope I have better news next time. 

Moving On

The pains started in mid July, although I noticed something was different in June. Despite that, I was in the midst of enjoying a fun and active month with family and friends. A long weekend in Montana with friends, a week in Essex County with family, another week in Steinbach with my second family. Thank you for the great memories! When our travels were done, SP and I decided it was time to sell the house and move into a condo. As we packed and prepared for the move, I noticed I was less and less comfortable walking, even just for a few minutes. A huge thank you to everyone who helped us pack, clean, clear, move, take care of Zoey, unpack and assemble! We really couldn't have done it without you. Much love and gratitude to you all for your time and generosity. 

July and September's scans were reassuring. Stable brain MRI and nothing to worry about on CT. None of it explained why my right leg was aching. A rheumatology consult (essentially) ruled out autoimmune causes, although I still have my suspicions. When the aches turned into searing pain and numbness, the oncologist arranged for an urgent spine MRI.  That's where they found it. Progression. There are lesions growing on the epidura of my lower spinal cord. It was compressing my nerves, which corresponds to the areas of pain and numbness. No matter how many times I experience this or know it is to be expected, finding out that I've progressed on another line of treatment is always devastating.  Maybe more so now because I was mostly healthy for a long stretch of time, to the point where I almost forgot what I was living with. It was good while it lasted.

I was immediately started on steroids to reduce inflammation around the spinal cord, and reduce the pains associated. I am currently undergoing radiation to my lower spine, in hopes of stopping the progression, and prevent further nerve damage, maybe even recover nerve function. Eight low dose radiation treatments altogether. I've undergone 5/8. Side effects this time around, extreme fatigue and nausea.  Of course, I stay on Tagrisso because it continues to work on my brain and the rest of my body. Let's hope radiation works so I can continue on the status quo, for now. Thanks in advance for any positive healing vibes, thoughts and prayers coming my way :). 

P.S. Friends and family, if we've forgotten to forward you our new address, please message us. 

Two Springs and Second Opinions

Our lovely, fragrant cherry blossoms (as seen through Prisma) before the winds blew them, and Spring, away.

Spring is my favourite season. It's a time for nature's renewal of life when buds form, flowers bloom and the rains wash away the memory of a bitter winter. It's invigorating. Having spent most of the winter in Victoria (minus one month back in Calgary in February for my brother's beautiful Banff wedding), I got to experience two Springs this year. Victoria's Spring began in February while Calgary's seem to have just come and gone. Double the cherry blossoms, double the tulips, double the enjoyment :). 

I am once again overdue in relaying the status of my health. First of all, I feel great! While snowbirding in Victoria, I got stronger, more energetic and... heavier (thanks to my indulgence of glutenous chocolate raspberry French turnovers;). However, February's scan results did not all reflect how I was feeling. The CT scan was stable (awesome!), but we were surprised and saddened by the radiologist's report on my brain MRI. He noted progression, albeit small. Thinking I would need another Gammaknife treatment, we sent the images to Dr. H (my neurosurgeon in Chicago). We were ecstatic to hear that those lesions were actually pseudo progression, caused by late radiation changes and were inconsequential. I've had two more brain MRIs since then and the same thing happens. Radiologist reports more progression, neurosurgeon reports just more radiation changes. I trust my neurosurgeon, because he actually knows me, rather than a random radiologist who I've never met, does not know my history nor bothered to see how I am feeling (no offence to radiologists). Getting the second opinions from Dr. H has saved me so much grief from being taken off an effective treatment too early, from having to undergo unnecessary and potentially harmful or ineffective treatment(s), not to mention the emotional distress that comes with a change in therapy. Can you imagine how differently this would have turned out for me if we had not asked for a Dr. H's opinion?? ... And THAT is why second opinions matter! 

Other than that fiasco, we are keeping an eye on a couple of things which may or may not have any significance. But I am still, indeed, feeling awesome and, mostly, normal so I'll just keep taking advantage of my good health, my good fortune, and the good life. Summer's heat, long days, festivals, fresh fruits, and social gatherings are just around the corner! Wishing you all a happy, safe and memorable summer! 

A New Year

Happy New Year everyone! I hope the holidays and the start of this new year has been good to you.  I have been enjoying my new found life so much that I've neglected my blogging! No apologies. S, Zoey and I are "vacationing" in Victoria, BC. We were here for much of December and returned, after a busy holiday schedule back home, in January for at least another month! While the rest of Canada was freezing, Victoria, although colder than previous years, had much more tolerable weather. Winter has been awesome!

Before I tell you what we've been up to, I should update you on my health. Throughout the ordeal in the hospitals in late summer, as I started then stopped then restarted Tagrisso, I continued to have routine brain MRIs and chest CTs. Tagrisso is working miraculously! My first scans and scans eversince (my most recent being early January) have shown massive  decreases in tumour burden in all parts. There are now only two tiny lesions in my brain and one small nodule in my lungs. My bones have all healed nicely and I feel 100% better! Tagrisso has proven to be very tolerable. I honestly think Tagrisso had very little to do with my hospital stays. Thank you AstraZeneca. Thank you everyone for all your prayers, words of encouragement, and support. I am thoroughly enjoying this renewed life with an abundance of gratitude! 

I thought I could just show you what we've been up to on Vancouver Island. A friend of mine introduced me to a new app called Prisma. It can take mediocre photos and turn them into art! Being artsy myself, thanks to a very talented high school art teacher (thanks Mr. G!), I have been busy collecting "art pieces" to share with you (most of which are from our weekend trip to beautiful Tofino/Ucluelet)! On top of that, we discovered Russell Books in Victoria and I have steadily been devouring novels. There are also great walking trails, parks, restaurants and villages to explore here. Today, we stumbled upon Victoria's Women's March and happily joined in on the rally! I am healthy and happy. I hope you are too:).

Along the Lighthouse Trail, off the Wild Pacific Trail, in Ucluelet.

Lighthouse Trail, Ucluelet

Zoey on Chesterman Beach at sunset, Pacific Rim National Park

Long Beach, Pacific Rim National Park

Little Qualicum Falls, lower falls

Peacocks at Beacon Hill Park, Victoria