December 3, 2017

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

November 13, 2017

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. 

October 30, 2017

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. 

June 9, 2017

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! 

January 21, 2017

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


November 10, 2016

LCAM 2016

It's Lung Cancer Awareness Month! I know it's not a well known event but I wanted to do my part to remind you that the simplest thing you can do to help is talk about it. Lung cancer has an unshakable stigma. We need to talk about it to change the general public's views of lung cancer and their lack of compassion. I wrote a rant about how invisible lung cancer is and how it's going to be near impossible to change perception of this disease, but there's too much negativity in this world as it is so, despite it being therapeutic for me to write the rant, I omitted it. Happy Lung Cancer Awareness Month! Go for a hike, go for a swim, talk incessantly, use those lungs and appreciate what you have :).

October 28, 2016

Tagrisso, Round 3

Since I last updated you, I spent another week in the hospital, in the cancer ward. Other than nurses waking me up frequently to check my vitals or change my iv treatment/infusion and getting poked daily at 6am by phlebotomists, I had a pleasant stay. I learned to give up on hospital food so S brought in takeout often... I actually put on weight this time!  

While I was in the hospital, my platelets remained low, even went as low as "zero" one day. The hematologist diagnosed me with ITP (idiopathic thrombocytopenic purpura--my immune system was attacking platelets!). They started treatment with IVIG (iv immunoglobulins), which was supposed to overwhelm my immune system enough to shut it down. After two infusions over two days, they realized it wasn't working. Fortunately, even with only "2" platelets (actually 2000 platelets per microliter) my bloody nose finally clotted after almost a week and the hematologist felt it was safe to send me home with a 4 day course of "mega" steroids, again to attempt to suppress my crazy immune system. This was great timing! I was discharged from the hospital the night before a close friend's wedding. I warned her beforehand that I may be psychotic (one expected steroid side effect) but the only side effects I got were high energy, no pain and an insatiable appetite, which was perfect for this special occasion:). The withdrawal symptoms are another story.

It was a perfect, warm autumn day in the Rocky Mountains. We made it just in time (don't ask) for the beautiful outdoor ceremony, where many of my other close friends were also in attendance. This was exactly what I needed. I forgot about only having "2" platelets, among other health issues. All day and night, we laughed, talked and gossiped, and I embarrassed the bride with our stories :). Thank you A & T !!! (and dex). 

Shortly after I began the steroid treatment, my platelet count started to rise. I was allowed to restart Tagrisso (round 3) with careful monitoring. More friends came to visit. And, as soon as it was safe to fly, I went to visit my childhood best friend and her family, who managed to fatten me up some more. This was a much needed escape: quiet, peaceful, carefree and gluttonous :). Love and gratitude to my Manitoba family! And all of my wonderful friends! 

As soon as I arrived back home, I enjoyed a week long celebration of my milestone birthday.  Zoey came back to us, in time for my birthday! Tagrisso is still working its magic (albeit at a lower dose) and the platelets are currently in a safe zone, although weekly monitoring continues. I feel "normal" again, socializing, cooking and cleaning, and talking about mundane everyday things. Life is good :).
 

September 19, 2016

Here We Go Again...

I am blogging from a hospital bed again. For a different reason. Before I tell you about this week's ordeal, a huge thank you to everyone for your prayers, positive thoughts, healing energy, etc. Please keep them coming! 

After my first week back on Tagrisso, I anxiously got blood tests to see how my liver was doing. The good news was that almost all of the liver enzymes were within normal limits or close, and the tumour markers continue to decline...Yay! Unfortunately, my neutrophils, hemoglobin and, especially, platelets were dropping to dangerous territory. The platelet drop was concerning enough that a repeat CBC was needed to make sure it wasn't going to lead to serious complications. Two days later, my oncologist called to tell us that my platelets had now dropped to 5!!! The normal range for platelets is 150-400! In fact, I had been dealing with a bloody nose for about 7h by then. I was taken off Tagrisso again :( and I was to go straight to the ER for a platelet transfusion since a risk for internal and/or cerebral hemorrhaging was high. How do I keep getting into these dangerous situations? In the ER, I got 2 doses (bags) of platelets and a rhino rocket (i.e. nose plug). A huge thank you to the 10 donors for your platelets. Yes, it takes 5 people to make one dose of platelets. Please consider donating blood if you can as there is a huge shortage. In fact, we waited an extra 3h for my second bag because it had to be sourced from another hospital.  I was sent home but I was asked to return Sunday to remove the rhino rocket. 

Sunday evening, we returned to the hospital to get the rocket removed. Unfortunately, my nose continued to bleed so another CBC was done. Now, my platelets were 4 (from 37 after the transfusion!) after only 2 days, but my hemoglobin and neutrophils had improved. The ER doc was perplexed as to what was going on. After consulting with on-call oncology, another 2 bags of platelets were transfused. Another CBC was done. This time, the platelet count only improved to 11 (it should have been closer to 40). Something is eating up my platelets!!! A hematologist was consulted and 2 more bags of platelets were transfused. That's 6 bags now total, or 30 people I owe my life to. Thank you so much for donating your blood!!!

And now we wait. My oncologist and a hematologist have been consulted. I will eventually be transferred and admitted to the hospital connected to my cancer centre for better care. In the meantime, more tests are being done to try to find out what is destroying my platelets so rapidly. 

Word of advice to other EGFR+ lung cancer patients: DO NOT try nivolumab unless it's absolutely necessary. I truly believe it messed up my immune system and causing my body to attack itself. I have also read over and over that it's ineffective for EGFR+ people. Please be careful with immunotherapy.

I wish I had better news to share but it looks like more challenges have come my way. What doesn't kill you can only make you stronger, right? Let's hope it makes me stronger... And that the food and sleeping at the other hospital is better. I would also like to get off this ridiculous roller coaster ride...