Radical Remission - surviving cancer against all odds

 I've been reading this book Radical Remission over the past several weeks and I wanted to share some of the insights from it as I think it makes alot of sense.

The book talks about 9 key factors that can make a real difference for those of us with cancer.

1) radically changing your diet

this is really around the eat to live philosophy that i've read about before and partly why i changed my diet to alot of plant based foods during my first diagnosis.  there's definitely ways to be more strict - eg: no sugar at all, zero alcohol - things to consider going forward.  Also really restricting any processed foods and focusing on whole foods in your diet. 

2) taking control of your health

this talked about more than just physical health - of course exercise is key, however healing also could including things like going to a naturopath doctor, going to a psychotherapist, going to an energy healer, even things like massage and acupuncture.   mental, emotional and spiritual health is important too. 

3) following your intuition

this was interesting - it was about quieting your mind through things like medication and guided imagery and then charting a course for yourself to heal based on your intuition.  journalling can help too. it's about discovering what will help you heal from a holistic perspective.  it could be something like a gratitude practice that you begin.  or it could be other concrete actions too.  it talked about how cancer is built up or blocked energy, that can be released. 

4) using herbs and supplements

this section spoke about various herbs and supplements people have taken to help heal their cancer.  something as simple as a probiotic to anti fungals and liver detoxifiers (eg: garlic, oil of oregano) and also immune system boosters - 12, vitamin C and D, tumeric, Green Tea etc.   I could see the guidance of a naturopath being helpful here. Or - even pursuing chinese herbs/medicine.

5) releasing suppressed emotions

the next few sections I found super interesting!  this section talked about how releasing stress actually builds your immune system.  the key is to find a place a peace.  at peace with dying and at peace with living.  not an easy task but if you bring your body into neutrality it can be in rest and repair mode.  so I need to let go of fear and uncertainty, and stay peacefully centred in the present moment - then my body has the ability to heal.

journalling can release emotions! you can even write something out and burn it (more on that later :))

also practice daily forgiveness of myself and others.

therapy is also very beneficial here :)

6) increasing positive emotions

this is pretty self explanatory but some ideas to do this were:

start and end day with gratitude!

find ways to smile and laugh each day - boost your immune system with comedy! and also surround yourself with people that energize you

also get active - get out in nature, dance, do meditation, call a friend

7) embracing social support

thing like wellspring, support groups, and ways to connect with others are so important and helpful for healing!  i'm doing the healing journey class with wellspring right now and it's awesome.

8) deepening your spiritual connection

this section went into things like deep breathing, walking outside in nature, doing guided meditation and following guided imagery practices, as well as looking at things like daily prayer and spiritual groups.

9) having strong reasons for living

i loved this section.  there are a few exercises suggested that I will do.

Write down how many years you want to live

Write down your ideal obituary of how you want to be remembered and what you have accomplished

Make a list of all your current reasons for living and enjoying life!

Think about what you'd change in your life - and make your remaining time on this planet as enjoyable as possible. - eg: career, relationships, hobbies, spirit

Have strong dreams and a desire to be well.

Think about what you'd regret not doing if you have 2 years to live?

Why do you want to stay alive?

What activities bring you energy and joy?

Great thought provoking questions that I will be journalling about :)

Some other quotes/insights:

be grateful for every day and do what you can to make a lot of good days happen!!!

What I am taking away from this is there is much more than just traditional treatment for cancer that can help you heal.  Lots to think about and put into practice here for total healing.

The forgotten patient

I’m feeling frustrated today with my care at mount sinai and this is unusual as I’ve always felt I’m in the best hands.

It was suggested I do a more fulsome genetics panel this time as last time I was only tested for brca1 and 2. It was initiated in July and was supposed to take 2-3 weeks. I followed up last week to ask about it and it turns out the lab didn’t do it. I’m frustrated that as the patient I’m the one tracking this as it could inform my treatment plan - eg more surgery. Where are my two oncologists and the genetics contact??

it’s now been expedited but it certainly makes my care feel less personal. Like I’m a number and not a h human with a life to get back to. 

I want to know my full treatment plan!!

It’s a marathon!

I’ve had a few people acknowledge that they didn’t realize how long treatment takes and they are surprised at how long even chemo goes on for.

It’s not something I forgot that’s for sure. I know this part would be tedious, tenuous and drawn out. It’s a hard place to sit in sometimes.

This is where the patience really comes into play. as well as the emotional and mental resilience in addition to trying to survive the physical blows of chemo.

To some extend life is on hold and that part is certainly frustrating.

I have fomo for some things for sure.

But I also want to be careful in my activities as it can wear me out, or I can be more susceptible to illness which I really don’t want. As much as I hate chemo, I want to keep this train going and not derail the schedule. 

So the priority remains trying to stay as healthy as I can and rebound safely and well after each session.

Fingers crossed for 4 more successful rounds.

33 percent done chemo

I had my second chemo on August 29th - 33 percent done!

Side effects were very similar to round one but I am going to flag some concerns because I feel the peripheral neuropathy quite a bit in my feet still. If they are willing to lower the dose I may ask.

The Lapelga white blood cell shot also still sucked. I may see about changing to Neulasta which I had in 2016. 

My hair is really shedding quite a bit :( 

It’s hard to watch but I want to stick this cold cap process out as at the very least my follicles are being protected for faster regrowth after this is over.

Hats are my friend right now.

I’ve been getting some hot flashes this round too so I guess I’m in chemo induced menopause - fun fun!

For this second round I used an electric blanket that Marie and Erin got me and it made a huge difference!!

So cozy. 

On Sept 19 I will do chemo 3. 

Chemo #1

I had my first chemo on August 8. It was a long day! I had to get my pic line placed which took awhile and I’m also doing cold calling before during and after the infusions so it adds time to the day. Next time should be better and faster I hope!

Jeff was with me the whole time :)

the side effects of this protocol - carboplatin and paclitaxol - were a lot of fatigue, nausea and GI issue, dry mouth. I also had some insomnia from the steroids and leg pain from the white blood cell shot. It was not the most fun week or so.

I’m doing ok in the off weeks although still have some bouts of tiredness. I have been able to do some light workouts though so I am happy about that! I’m doing light weights and yoga and walking the dogs. It does a lot for my mental health to be able to move despite the pic line and side effects.

It’s breast cancer

Well, as much as I’d hoped that surgery could be enough - the pathology from surgery showed a new breast cancer.

Dr Gladdy gave me the news - the good thing is surgery was successful with clean margins, and the cancer is out!!! But she had arranged for Dr. Watson to see me immediately after - he will be my medical oncologist this time.  I will be moving ahead with chemo in August. 

I liked Dr. Watson right away and I know he wants to help me. He called this another “bump in the road” and that he wants to get me through this and have it be in my rear view mirror again as soon as possible. I like that attitude! 

There is a new protocol option available now that I plan to try and I also have the option to try a cold cap. Which means I may keep some hair or at the very least it will protect my follicles for faster regrowth and less thinning.

It’s good and bad that I’ve done chemo before. In a sense I feel more prepared. I got my eyebrows microbladed so at the very least I don’t need to draw those one which is a big deal. I also know how tough it was. Not just the side effects. Which at times were really tough. it’s the isolation and loneliness that comes with having cancer. 

I know it’s 4 months of a hard road. I will pull up my big girl pants and get through.

I feel a lot of love and support which is overwhelming and I am so grateful for it.

I am grateful also for a strong medical team that has my back and will do what they can for me. I know I’m in the best place for the best care. 

Surgery complete and processing it all

On Friday June 21st, I had surgery at mount sinai to remove the tumor in my left breast.

Based on the initial biospy, the tumor was NOT triple negative breast cancer - they believe it is a type of sarcoma.  So I was referred to Dr. Gladdy who specializes in this rare type of cancer, and she was my surgeon last week.  Another excellent doctor at Mount Sinai - I'm so thankful for their fast and considerate care of me.

Now we wait for the pathology to confirm the type of cancer and any further treatment needed.  If it is the sarcoma they believe - I may not need chemo or radiation.  And if she got clean margins, no more surgery either. this would be the best case scenario and the one I am praying for!

It's been a whirlwind this whole situation.  I am now trying to process everything and deal with the mental and emotional journey, as well as rest and recuperate from surgery.

I'm grateful for so much - for my mammogram being expedited, for seeing the doctors so quickly, for a fast MRI and ct scan, and for a very quick surgery taking place.  This shit is out of me and that's a huge mental load off me!

However I am processing how and why this came to be and all kinds of feelings are here to be addressed.  Shame, guilt, fear, sadness, frustration.    Cancer made me crash into the wall once again, and life was halted to deal with it.

I'm frustrated because I was in a great groove, in a new role at work and gearing up for summer.  

you make plans and god laughs!!

My head went to the darkest places too - thinking the same cancer was back and all over my body and literally time was going to be up.  until I was told otherwise - and of course I am so thankful and relieved for this.

I'm still a bit pissed off though.  there's always the why me in there.  what's the lesson this time?  I already have faced these lessons before.

what is out of balance that i need to address?

On the positive side, i very much feel the love from friends, family, colleagues, my boss.  I know I am loved and I am so supported this time.  It's overwhelming at times, how much love I do feel.

And I think for me - that's what I need to focus on and hold on to.  

Even if it had limited time left - heck any of us might - how would I want to live? what are my values?

I want to have joy and be content in life.

I want to be around people and things that bring me peace.

I want to continue to have special experiences and make the most out of this life.

I want to share love and share kindness and share hope with people.

I want to live with courage and resilience and optimism.

I want to leave a legacy that reflects these values. :)