Rob's Chiang Mai Brain Cancer Journey Page

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THIS IS AN 2020 FIRST QUARTER UPDATE TO MY GO FUND ME ACCOUNT AND TO ROB’S CHIANGMAI CANCER JOURNEY FACEBOOK PAGE...

GENERAL UPDATE:

My energy level has dropped to about 7% of what I remember as normal..

Therefore we will not be attempting a USA trip as originally planned for May.

I will now focus on Present Moment awareness and quality of Life in some of the following ways: good but healthy food, conserving energy for friends that visit, enjoying our lovely home and garden, spending time with old friends that are flying in from outside of Thailand as well as the friends locally. (my normal ‘visiting hours’ are now Mondays & Thursdays but other times/days are available upon request.

I will not be considering any new treatment methods. Thank you for respecting my wishes. And thank you to the many who have have shown such support kindness and support in so many ways already!

Due to some of these changes, I’ve lowered the GoFundMe total to about $18,000...(542,000 baht) much has already been paid for too :)

THANK YOU! [below is mainly the original post from 3 months ago..]

Dear all, sorry for the long delay.
It has been about a month from my initial sudden brain tumor surgery and finally we have managed to collect and sort many things in order to embrace a way forward from this sudden news.

Here's an update of the latest biopsy report that I warn you in advance is quite hardcore.
The brain tumors I have are aggressive and are confirmed as glioblastoma multiforme (GBM).They have even grown back some since my surgery of only 4 weeks ago.
According to my oncologist, the average prognosis is 12 months for someone like me, which means 50 percent of the people who suffered glioblastoma multiforme (the type of cancer that the biopsy reports I have) do not live past 12 months. There are some people who live a couple of years later, but also some who pass earlier.

This is the graph that summarizes it but please affirm with me that I am not simply a statistic of some random past medical trials! I am a Divine purpose with a specific time and place in this world to co-create and contribute to it in my own unique way. The so-called 'facts' in this update are merely meant to give you some context to what I've been dealing with. They do NOT define or limit me.

Other news that we received from a top pathologist based in Bangkok is that the type of cancer that I have is unmethylated or, to use a common tongue, it's so aggressive that chemotherapy doesn't really do anything worthwhile and therefore radiation so far is the only treatment option. Statistically speaking, the best chemotherapy would only give me another month, and the physical, quality of life and financial cost isn’t worth that. There's another type of therapy that is called Gama ray but it's not available except at some top military hospitals in Bangkok.

I have come to a decision to put my recovery and healing focus at my home in Chiang Mai, where I have a support network. It is hard for me to travel, Mahel doesn’t have the ability to move around the globe I enjoy (he’s obviously my central person and caregiver) and I don’t have the financial resources to cover high US medical expenses, nor do I have the mind set to keep 'searching' for 'solutions'. Therefore, I am focusing on my own process and going deeply within for the next 6-8 weeks so that I am not swayed by precedent or other appearances that float.

I'm going to begin 6-7 weeks of radiation therapy today Tuesday, Sept. 17. I am required to undergo the therapy for five days a week. I have been told that I'll be losing more and more energy and capacity since the radiation is targeting the larger, growing tumor on top of my head, they say in the “executive functioning part” (think numbers, complicated decisions, etc) as well as two smaller ones inside my brain that are too far deep to be surgically removed. I’ll obviously lose more hair too.

They aren't expecting any major side effects from radiation, but I am preparing my life to just relax, have all my affairs in order and focus on my own process for healing in those 6-7 weeks.

Here is what it will look like:
I'll have to take a taxi to Chiang Mai Ram Hospital and arrive there at 3.30 PM, where they will take me to the Chiang Mai University Hospital (Maharaj), which is a teaching hospital that has the equipment for this type of treatment. I won't have an appointment because it is first-come, first-serve, public facility starting at 4 pm each day.

Later in the treatment, I could likely get disoriented and will need someone to be with me at all times to make sure I get to the treatment on time, eat and take my medication, get home safely with all my comfort bags and pillows, etc. A is going with me today and then we will know what the real 'drill' will look like. I’m confident that we will find others to help me in this process over the next 6-7 weeks.

We’ve also had a number of high, unexpected expenses associated with the brain cancer operation and resulting exams and other doctors, not to mention, loss of income for Amahl as he needs to turn down some online work to help get things organized for this next major phase of my/his life.

I AM SO PROUD OF HIM!

We also have to switch my education visa to a medical visa (to allow me to stay in Thailand) and are also applying for a US Tourist Visa for Amahl so he hopefully can go along with me when I am stable enough to fly. I had to cancel flights to China and many other projects that just were about to go on-line so this took a long time to get to a clear and grounding baseline from which to move into this next phase.

We are also needing caregiver hours and to make sure the house is well stocked with food and items for the 7-week path ahead. We’ve set up a gofundme.com site you can contribute to at https://www.gofundme.com/robert-applegate if you would like.

In summary this is a sense of my immediate expenses:
Hospital, emergency surgery to remove as much of the tumor as possible: Fully paid for and successful, at $26,000 but the doctor claims it has grown since the initial surgery.

Going forward in 2020...

Biopsies: $ 4,500 USD PAID

Radiology for 6-7 weeks Total $9,217.87 USD PAID

Caregiver/housekeeper $100 a week for 16 weeks? $1,600

MRI’s Cat Scan’s so far and before starting Radiology and on ending at the end of 6 weeks: $2,500 USD

Flights back to the US if needed in April? 2x $1,200 each (and I may need more than economy class) CANCELLED

Convert my Thai Education Visa to a Medical Visa to stay in Thailand: $400; converted once, but still needs at least one more more extension in 2020....

* Hospital bed $500 (to be donated after I no longer require it)

Plus apply for a USA Tourist visa for Amahl: $855 on time
charge, good for 5 years if it is accepted. CANCELLED

Medication: On going and not completely clear, but estimate at $425month USD

$200/month for good basic nutrition, vitamins, etc. We hope to do a fund raiser here at the Open-Heart Venue in Chiang Mai AFTER the initial 6 weeks. We might even have a Commitment Ceremony...
😉 WE DID!

However, if you add this up it’s looking like we’ll need something like $24,000 USD over the next few months and that’s without adding normal living expenses like transport, food, rent, etc.

I am lowering this total amount slightly to $18,000 (542,000 Baht) due to some changes mentioned in this update...[most of this has already been received!]

We are blessed though and all is fine, including with a wonderful 3-bedroom, 3 bath home, but please be mindful if you want to visit. Many have already booked time to visit and support us through end of February. Know I am fine, I am not in pain, I am fully supported by my new community here in CM plus visitors from outside of Thailand. We have finally sorted out so many of the logistics for moving forward: medical, visas, in-home care, etc. It feels so much more peaceful to arrive at this steady and supporting space - a gift.
I really look forward to just sinking into it.

Here is the revised Gofundme.com site https://www.gofundme.com/robert-applegate

Bottom line, my Source is the Universe, this is not a plea for help. I am in as good a place as I could ever be.
Love –
Robert & Amahl

3rd Official Update, December 6th... LONG POST

Do sit down and get your cup of tea ready.

1. Medical Summary:

This is the 3rd official update for my Chiangmai Cancer Journey.

* First diagnosed with brain tumors on August 20th
* Operation on August 27th to partially remove the main tumor that is located on the top of the brain; the other 2 small masses are not in a position to be safely operated on.
* Started daily radiation sessions on September 24th for remaining tumors.
* Ended radiation sessions on October 30th
* Rest and recovery...lowering of steroids intake every other week
* Due to some adverse reactions, we moved up the MRI originally scheduled for the end of the year to December 2nd and discovered that although the original 3 tumors had shrunk a bit and the edema/swelling was less, there were two other small tumors that have sprung up.

This is the nature of my type of brain cancer...
glioblastoma multiforme
Glioblastoma is the more common name for a type of brain tumor called a grade 4 astrocytoma. Glioblastoma are 'diffuse', meaning they have threadlike tendrils that extend into other parts of the brain. They are fast-growing and likely to spread. You may also hear them called glioblastoma multiforme, GBM or GBM4.

Because this type of brain cancer moves so quickly and there aren't many alternatives for treatment I have decided to stop pursuing other treatments and focus on the quality of life. It is estimated I have between 3-6 months life of physical life left. I might start getting more symptoms of the tumors pressing on important motor functions much earlier than that.
Currently, I am not in pain and can type and think clearly most of the time. However, I have very little energy. The radiation and steroids took away most of my muscle mass and added pockets of fat that make me fatigued and hinder my movement.

For example, I can't get out of bed or stand up from a chair or go outside to water the garden very easily. We have lowered my steroid doses to as low as possible, but it will still take a long time for any energy to return due to the loss of muscle mass and fat deposits.

2. LOGISTICS
* Amahl and I love our home and the Chiangmai community. Other than a possible trip to the beach, we have decided to stay here for an extended time period.

* Due to my energy level, I rarely go out for anything other than doctor appointments. But I welcome visitors!

* I am finally open to receiving phone calls and visits with prior appointments. I am best in the morning time (evening for North America), I have a toll-free number or else we can use Facebook, or WhatsApp.

* We have a guest bedroom if someone wants to come to visit (please rsvp in advance, several friends are visiting already in December)

* Almost all of my end-of-life issues are taken care of. I urge everyone in Thailand to check out the resources found on this website to prepare of the unexpected: http://www.lannacarenet.org/useful-information/ Thank you for the loan of the wheelchair LannaCares!

3. MY OUTLOOK
* I am so grateful for the support Amahl and I received for our Commitment Ceremony on November 24th. We have wanted to have some kind of public celebration for some time. Thank you! Photos on Facebook: Amahl and Robert's Public Commitment to Love

* I also remain grateful for the vulnerability this challenge has allowed me to take on. I am discovering a whole new world of Being instead of Doing. I've known this academically for some time but now I get the opportunity to live it and connect with people on a much deeper level.

* I am also humbled and grateful for the several fundraisers that some people have started on our behalf. Since I haven't been able to do much of anything other than focus on the medical these past 3 months, the donations have been VERY useful. Such generosity!

* We want to give back to the community by offering our venue Open Heart Home for community organizations that need a venue (workshops, fundraisers, training, etc.) Please see our page and contact us: Open Heart Home

* I have set aside time and energy to offer (FREE) spiritual counseling again. It is something I really enjoy doing so please take advantage of it. https://csl-chiangmai.com/spiritual-counseling/

* I am also offering a once a week informal on-line meeting for a small group of individuals who want to focus on finding/polishing/thriving in their "NOBLE PURPOSE". This is not so much a class as it is a support group for people who have exhibited READINESS to drop old habits of thinking/acting. Please contact me for a conversation about possibly being in the group= some people are joining from Shanghai as well as Chiangmai.) See for more infohttps://www.noblepurpose.com/: [While the material can be useful from a career. scientific or academic perspective, we will be using spiritual practices to bring our Inner Divine out into the world]

Rev. Robert Applegate
Spiritual Director
Centre for Spiritual Living - Chiang Mai
www.CSL-Chiangmai.com
Cell: +66 930414767
Facebook, Whats App, Line
Toll-free from the USA: 619/376-2058

The mask used during my radiation treatments is now artwork transformed by Wai Wai who is also doing our styling for the Commitment Ceremony happening today in about 4 hours😁

What an unusual experience! Amahl helped me go to Makro today for the first time since my brain surgery almost 3 months. We used a wheel chair and took a GRAB taxi. Just before I strained to get out of the taxi and into the wheel chair the driver asked me if I was Super Man?

Yes, she clearly asked me if I was Super Man!

I laughed since I obviously don't feel like Super Man these days. However,I used to be called that on the street in the mid 80's since I had a square jaw and wore big 80's glasses like Clark Kent.

Anyway, now that I'm home and drained from that shopping experience I realize that she didn't think I looked like Christopher Reeves in the movies! She must have been thinking of Christopher Reeves after his horse riding accident.

I still don't think I look like Christopher Reeve after his accident. Do you?

Anyway, after looking up more info on him, I see that he really was a power house after his accident in both film and medical research.

Here is one point...

Of Christopher Reeve, UC Irvine said, "in the years following his injury, Christopher did more to promote research on spinal cord injury and other neurological disorders than any other person before or since".

It reminds me there are many ways to use one's POWER. It doesn't need to look or feel like the 80's :)

To be fully honest, I still need to process this much more than I have here...Dancing to 80's music comes to mind, but even the ability to get into /out of a taxi without effort is something I need to be patient with and not expect it to show up a week after my radiation ended.

Here is an old German saying Yolanda Vom Hagen just told me yesterday when I said I was being impatient in my recovery post radiation: Die Pferde ruhig halten.

I have been self accumulating and revealing much of this over the last few weeks.
How exciting to hear this legendary author/speaker so clearly articulate it for all of us.

Caroline Myss: Choices That Can Change Your Life at TEDxFindhornSalon : the Youtube link: https://www.youtube.com/watch?v=-KysuBl2m_w

What we are used to doing is believing that a big choice is an obvious one: buying a house, getting married. Getting divorced. In fact, those are your small choices. The choices that actually matter when it comes to your health, when it comes to healing, when it comes to positioning yourself, empowering yourself are the tiny ones that — that are the choices I should say that you think have the least power that you make in the privacy of your own company. That perhaps you think have the most — they’re the most insignificant — I have found repeatedly repeatedly, are the most powerful choices of your life, the most powerful, that have the most powerful impact on your biology, on your inner — on your soul, on your sense of who you are, on your well-being, on your whole life map.

today was a 'ferocious' abundance day for great food showing up at my door. Alain dropped off a Morrocan Chicken Tureen. and that was soon followed by Steve dropping off homemade Okra pickles, red pepper hummus, and black bean dip...plus Katherine had given me some delicious grapes on Sunday so the meal perfectly coordinated in taste yet not in deliberate logistics. Half my head lost hair the last few days so I just evened it out all over and pondering what my Halloween costume will be this year. My last Radiation Session is currently on Oct 31st :)

From time to time an old friend (David Macrory)
in San Diego sends me music videos of blinding Beauty. This is is a great example.

https://www.youtube.com/watch?v=FZe3mXlnfNc

Spiegel im Spiegel (lit. 'mirror(s) in the mirror') is a composition by Arvo Pärt written in 1978, just before his departure from Estonia.

Some background:

"Spiegel im Spiegel" in German literally can mean both "mirror in the mirror" as well as "mirrors in the mirror", referring to an infinity mirror, which produces an infinity of images reflected by parallel plane mirrors: the tonic triads are endlessly repeated with small variations as if reflected back and forth. The structure of melody is made by couple of phrases characterized by the alternation between ascending and descending movement with the fulcrum on the note A. This, with also the overturning of the final intervals between adjacent phrases (for example, ascending sixth in the question – descending sixth in the answer), contribute to give the impression of a figure reflecting on a mirror and walking back and towards it.

``````````

My new awareness that came to me as I listened for the # time. Notice how still and present all the people are on the stage...Everyone is being VERY centered. The awareness that I can walk /reach out & touch the past, the present and even the future by being so centered. It's all here now and not ever going to be any different even if the human form is somehow different.

COMPLETE DIVINE ACTIVITY IS MY BIRTHRIGHT NOW AND ALWAYS

A closing prayer from my dear colleague Rev Trish Hall
I now immerse myself in the clarity, simplicity and directness of this statement. I contemplate and absorb this guidance. In total conviction that the divine pattern, which is perfect, is equally present everywhere, I focus this prayer on the clearing of consciousness – the clearing of all discord from the whole mental life, both conscious and subjective, so that all are automatically healed. This I know … God is all there is. God is perfect. God is omniscient and omnipotent. God is expressing Itself into and as all creation. I am one with and inseparable from God – in me, as me. I rest in this awareness. From this conviction, I declare the Truth that “God includes humans. Spiritual humans are divine beings, as complete and perfect in essence as is God. When in thought, in contemplation, in imagination, in inward feelings, we consciously return to the Source of our being, the divine pattern which already exists springs forth into newness of manifestation.” I know that nothing unlike this Truth can coexist in its present. I know that all discord is now vanishing back into the nothingness from which it came. All that remains is the Divine Truth of the Perfection of God and of God in expression. Peace is restored. Compassion blossoms. Love prevails. I am immeasurably grateful for knowing the power of prayer, for knowing that the fulfillment of this prayer already exists in Mind, for being alive to celebrate the removal of all seeming obstacles the experiences of Peace, Compassion and Love, and the opportunity to share this knowing far and wide. I release my word with conviction. I know its fulfillment is now being experienced. It is complete. And So It Is! In Love and Gratitude

After nearly 20 years of eating 'healthy' breakfasts of mainly oatmeal (no milk, no toppings, simple fuel for the body) I have decided it is time to add quality and more sensation to my food. Life is too short for inferior butter!

DEEP breath everyone!

I am going to try to make a short video tomorrow with a more personal update.

To be honest, I accidently opened the to door to this new room just a couple of days ago when I read a poem by Mary Oliver. I expanded it during a phone call to an old friend back in the USA, then tested it out face to face last night last when a friend dropped by. I won't be easy to have this conversation, but it is necessary.

Here is the poem...
(sorry to non-native English speakers; my video will not be difficult to understand)

"The Oak Tree at the Entrance to Blackwater Pond"

Every day

on my way to the pond

I pass the lightning-felled,

chesty,

hundred-fingered, black oak

which, summers ago,

swam forward when the storm

·

laid one lean yellow wand against it, smoking it open

to its rosy heart.

It dropped down

in a veil of rain,

in a cloud of sap and fire,

and became what it has been ever since—

a black boat

floating

in the tossing leaves of summer,

·

like the coffin of Osiris

descending

upon the cloudy Nile.

But, listen, I’m tired of that brazen promise:

death and resurrection.

I’m tired of hearing how the nitrogens will return

to the earth again,

through the hinterland of patience—

how the mushrooms and the yeasts

will arrive in the wind—

how they’ll anchor the pearls of their bodies and begin

to gnaw through the darkness,

like wolves at bones—

·

what I loved, I mean, was that tree—

tree of the moment—tree of my own sad, mortal heart—

and I don’t want to sing anymore of the way

·

Osiris came home at last, on a clean

and powerful ship, over

the dangerous sea, as a tall

and beautiful stranger.

—Mary Oliver

Rob's Chiang Mai Brain Cancer Journey Page If you'd like to keep up to date with my Chiangmai Cancer recovery journey, please like this page. I

SECOND UPDATE for Rob's Chiangmai Cancer Recover page. Please like the page for occasional updates about every 2 weeks?

It seems like a long time ago when the first Facebook update on my brain cancer diagnosis was created. I am so grateful for those who jumped in quickly to help me sort out all the tumbling muddle of issues that needed to be identified and addressed. At that point - post surgery, I couldn't even type or dress myself.

One of the many issues that had to be addressed was financial. I am grateful that the initial surgery and hospital costs were all fully sorted and paid The next issue was what kind of follow up treatment plan to embrace.

OK, now for the medical so-called facts in review:
* My medical diagnosis is an aggressive type of brain cancer and my particular version of this kind of cancer has limited options for post surgery treatments. I am taking this as a blessing! At this point I will probably only focus on radiation therapy for 6 weeks M-F and then take a month to let my body rest and then see what the MRI shows.
* Chemotherapy which can be so debilitating and miserable for many is not medically indicated in my case.
* I am completely confident with the doctors I have supporting me here in Chiangmai.
* I will NOT be seeking other options until November 12th at the very earliest. Please, please do not suggest anything until I am ready to emerge from my own deep dive of remembering my Wholeness concurrent with the radiation sessions.

My own internal process for RECOVERY and WHOLENESS
:* I can't explain fully yet what a blessing this time has been and continues to be..
* There was a lot to sort out and change in my life right after surgery but 99% of that is now fully handled/organized. I now have the opportunity to simply let go and create new rituals and meaning for my life. My well oiled habits didn't surrender very quickly but now I'm more 'there' than I ever thought I'd be in my life. In short, my new life is working fabulously!

MORE DETAILS
* I am not in any pain and just love, love being home in a still meaningful way.
* As I said before I feel very supported by my medical team here and I'm simply allowing them to do what they do best.
* I can imagine that many of you want to have more medical facts and statistics to allow the human mind to crunch the situation. Sorry, I'm not going to do that here. I have done plenty of that overy the last month. Now it is time to focus on my own Power and Wholeness.
* I have plenty of experiences already to confirm that this is PERFECT for me and the Divine Activity that is my Life. (I'll give examples later. It is more important for me to BE now than to explain or convince anyone of anything.
* I am being physically supported by a very committed and loving community here in Chiangmai plus some who have flown in from China and elsewhere. (Daily radiation visits, shopping, food prep, etc.)

HUGE GRATITUDE:
* for my long time NYC friend Ross for getting to Chiangmai days after my emergency surgery and being the Field Marshal of so many complicated things.* blinding love for my husbro, Amahl for allowing our life to change so quickly. He has managed to continue to work full time AND be responsible (especially in the early weeks for all things financial, food, doctor visits, and day to day home coordination/upkeep. (I'll give plenty of amazing examples of how he has accomplished this later.)

FRESH NEWS!
* We are having a commitment ceremony here in Chiangmai! Your'e invited! Tentative date is Sunday late afternoon November 24th. We have been wanting to do something like this for years now, and feel this is the perfect time to create this new threshold in our life. We are so excited to share it with you! Final confirming details should be ready in about a week.
* We are producing a community Gratitude music video! The community participation of this will also be in late November. Stay tuned for details.
* We have also engaged a lawyer to help Amahl obtain a US tourist visa so that we can possible visit North America in the Spring of next year. We will not be traveling for any reason until late March at the very earliest. This is a time for putting down a deep tap root here in Chiangmai despite any so-called issues that appear to be contrary to our vision of creating a purposeful life here. (again, I have plenty of examples of how this is already happening but won't go into it here)

COMMUNICATION:
* I am choosing to be very selective when and what I communicate and to whom the next 6 or so weeks. After that, I'm looking forward to catching up in a meaningful way.

* Please, please do not ask Amahl for information or suggest much of anything. We both have a lot to 'do' and be.
* In terms of the Commitment Ceremony and community music video, we will have a designated coordinator to help you attend if that is possible for your life. It's going to be so awesome!* We have had a lot of visitors already and there are some still in the pipeline, but if you're not already on the house guest list, please don't expect anything until late November at the earliest.
* If there is an important question that needs attention, please pass it by Ross and he will alert me: [email protected]
Go Fund Me Account:
* We feel very supported and secure in our life path at the moment. Thank you all for what you're doing/being and especially thank you to those who have donated to the GoFundMe Account that Ross set up. Here is the link again if that is something that calls to you: https://www.gofundme.com/robert-applegate

HAPPY NEW YEAR!
* as Marianne Williamson, US Presidential candidate reminded me yesterday, this is the start of the Jewish New Year (Rosh Hashanah) and the first 10 days are dedicated to noticing and appreciating the Awe we call Life. Please join me in this practice and I look forward to seeing or communicating with you again soon, ie come to the ceremony in November!

Click here to support Robert Applegate organized by Ross Moonie Ross Moonie Robert Applegate I was diagnosed with three GBM brian tumors on August 14 in Chiang Mai Thailand where we've lived for a year. Prior we were in Sh