Monday, 4 May 2015

May The Fourth Be With You!

The Star Wars reference of my title is inspired by my geeky kids. I wouldn't really realise the significance of the date if it weren't for them, so thank you kids.
May the 4th 2015 marks the second year of my lung cancer diagnosis. I came home from the hospital on May 4, 2013 having spent 4 gruelling days of diagnostics and testing. I wrote about this shift on my first post.
As I look back and rewind in my mind the events that unfolded in the past two years I can't help but gasp. Wow! What a ride! And I'm still on it!
A mere two months was what I was given, it's been two years, thank you very much! I was staged 4 Adenocarcinoma of the Lung, ALK wild type with a very rare exon 20 insertion mutation. The best case prognosis for exon 20 is 16 months, I've passed that too. I'm now Stage 3B, still late stage. I was told I will never be off oxygen, it seemed like it then, having dependant on it for 8 months. I rarely take my wheelchair now, planning trips so I'm saving steps and not going beyond the 4 blocks max that I can manage now without getting breathless. I've just used the tube again on my own.
Sometimes when I watch the news I would say "I would have missed that" or I tell my husband "I wonder if you would be watching this same show at this time if I was not around" or if I see something beautiful I go "I'm glad I stuck around to see that".
The first year was the most difficult, the pressure of deciding what to do and where to go, which treatment. It was suffocating, I didn't have time on my side. I was the weakest during the first round of chemotherapy. I was mostly in bed as I couldn't even get up the stairs. I had two hospital confinement two months apart spending 8 days each time, and each time in critical condition. They gave me three days to live in Spain. I endured the brutality of chemo for more than a year, longer than most can take. I have to say I did quite well considering the nasty side effects it usually brings.
On my first post I mentioned the book I randomly slid in my bag when I went for my X-ray, it's Bruce Lipton's Biology of Belief, for 4 days I was stuck with nothing but this and the view( the hospital centre court) from my isolation room as my entertainment. Epigenetics, we are above our genes, we can change who we are at the cellular level, in a gist, that's the message, and this is the ethos I've taken on in this journey, that we can heal if we change our perception. I'm Undiagnosed OCD and used to be expert multi-tasker like most moms, and being forced to stay in bed for months because you're physically unable to do anything else is torture. Life had to go on for everyone else so I was alone a lot but it is in this solitude, and in my stillness that I found myself, I know it's cliche, but give me a break, I've got cancer! Bruce Lipton made sense, so did Jon Kabat-Zinn. I was mindful! I knew even as the odds were all against me going past 2 months I had the one powerful thing even cancer couldn't take away - my state of mind. The mind that had evolved - arising from a renaissance of sorts if I may be dramatic, this was the one thing that is not ill, the one thing I know for sure I still have, it's that resolve to be, to hold on, and stay. It is in the profound quietness and non-doing that I was able to tune in. I've been trying to do so much but it is in doing nothing that I've accomplished more. My mind was the healthiest part of me and I knew I could harness that power to urge every other sick cell to heal. So now I may be sounding like a loonie but check out those two men I mentioned, it will blow your mind. I struggled and still am struggling with my diet, my treatments are on and off, it took some time to get the supplements and my routine right, but I still made it through the toughest times of the chemo. My journey wasn't just finding out how to regain my physical self but taking my mind beyond what IT thought to be impossible. This in itself was a journey for me, I went through turmoil in my heart and soul, and then in the moments of forced silence, I got an enlightening far deeper than I thought I was capable of. Does anybody hear Wayne Dyer chanting in the background :). For the first time my father in law, author of Psychegnosis books, made sense when he comes in and preaches "you are not who you think you are".
Let's not forget that the definition of health is the complete mental, physical, emotional, and social well being of a person and not merely the absence of disease or infirmity. So it may be that the imbalance is manifested physically but in reality, it's somewhere else, like in one of the chakras perhaps. It's been quite a journey, I haven't achieved NED ( no evidence of disease) yet, don't know if I will. I still have a long long long way to go, this is far from over. The physical right now is still a challenge, as expected, lung cancer certainly tops all as one of the the hardest to beat and manage. I'm starting to get back into my normal routine but still with limits. Though I managed to wean myself off oxygen when I was told I will need it for as long as I need to breathe, I still put it on once in a while when I feel like I need a boost. Life still throws major challenges, that doesn't necessarily stop when you get cancer. I still cry when things get tough. My recent scans showed a little progression and I hope my efforts to keep it stable will work in time, I know I need to do way more. I don't know which way the cancer is going to go but I will be okay regardless. My mind is already there, I'm in a good place, hopefully that's all I need, and if that's not enough, two years is still a bonus. Honestly, given the hurdles I've had to face and still facing, if my mind is not in the right place, I wouldn't have handled it. It gets tiring. You have to keep on top of it and not lose your threshold because if you do, it's a slippery slope and you fall deep. Heres to 2 years and counting.........

Thank you to my Oncologist and his team who patiently answers all my queries, my Acupuncturist and Tui Na practitioner who not only tunes in to my median points, but genuinely cares what stresses I put into my body on a weekly basis, his synergistic technique boosted my energy. To my herbalist who's become a confidante of sorts, thank you for listening and teaching me what my body needs. To the countless authors of the countless books, journals, magazines, pamphlets, websites, forums, etc, which guided me into mapping my own treatments. The team and nurses at Chelwest, for really looking after me and making my hospital stays as pleasant and as comfortable. My friends at the hospice for their support.
To my sweet Kirby who's sometimes a better listener than anyone, my perfect earthing companion.
I've met and counselled cancer patients seeking information on the treatments I do. I met a special couple, sometimes you just know you've found friends, and that's always a blessing. Reiner is not with us anymore, but I will continue this battle for him. I gained a friend, his wife Geetha, you are full of love, thank you.
To my husband, dear family, and friends who stood by me and is still with me in this journey.
To my two precious kids who I know suffer in silence, waiting for Mom to get well again, you are my strongest ally and provide my biggest purpose to keep going sometimes despite insurmountable circumstances.
My school mates from high school, university, and my friends and colleagues in animation, you've organised prayer brigades for me, sent well wishes, some of you came to visit after all these years, it was so good to reconnect, thank you.
To the cancer warriors before me who have contributed to research by participating in clinical trials, thank you I'm sure your efforts made it easier for me, I don't know if I'll be as brave.
Thank you to everyone who's been praying for me and wishing me well, keep them coming, your energies drive my strength ! Much love xx