Dear Wonderful Friends – really you are my family – and as such, I want to share something profound that is happening.
We can decide that new, even challenging experiences, can be used to empower what we teach (thoughts matter, beliefs matter, actions matter, prayers matter, LOVE matters) and rise to a higher and more wondrous level of ourselves. Something unanticipated has happened and, I believe, all of you are a very meaningful part of this “adventure.”
This might just tickle your imagination (wow, it does mine) and allow you to dream bigger than you have ever dreamed before. This may also inspire you to want everything in spite of the evidence (like the Son-Rise Program moms and dads who have defied the prognoses of doctors and experts by working with their children… or the folks challenging trauma with the Option Process and then finding clarity and peace, even as others were so skeptical and unsupportive).
We had asked Wendy Edwards (an Option Board member, a Son-Rise Program mom, a Wide-Awake Master Class student and doctor in her day-to-day life) to help us interpret and decipher the information we have been given from my medical files (there is tons of data, CAT scans, MRIs, etc. and biopsies and prognoses). When she studied all the medical data and read the letter below, she wrote the following to me. “Bears, I am so pumped!!! You are Mr. Miracle Walking!”
Well, I am smiling… I am still upright (yes, walking now) even though when I came home from the hospital, I could not stand, and the pain was intense. However, when Samahria and I were met by the folks from Hospice, we smiled, loved them and expressed gratitude for their help. Nevertheless, I have been very determined and energetically working my “butt” off to regain strength (still in process) – and the Hospice folks (now called palliative care support team) said (in so many words), I was not acting like a person who had been given 5 days to 5 weeks to live.
The letter below comes directly from my key doctor at Massachusetts General Hospital in Boston, Dr. Leslie Fang, who is a highly accomplished and respected physician who has consulted with a team of top medical and experts. I want to share this letter and summary he catalogued about my life (and the doctors’ investigation) over the past (almost) two months. He has been wonderful (actually, for decades) in supporting me (and some members of my family) with his sincere caring and high-level expertise.
-Letter from Dr. Leslie Fang-
Leslie S.T. Fang, MD PhD
John R. Gallagher III and Katherine A. Gallagher
Clinical Excellence in Nephrology
Firm Chief, Walter Bauer Firm,
Massachusetts General Hospital
Harvard Medical School
-June 15, 2022
This letter serves as an update to a very confusing 2 months for all of us regarding the history of your illness.
You initially presented to an outside hospital with symptomatic hypercalcemia with calcium level as high as 19 (normally below 10).
You were transferred to Norwalk Hospital for continuing care.
During the Norwalk hospitalization, you had:
- Persistently elevated calcium necessitating aggressive therapy
- Acute kidney failure related to the high calcium
- Confusion and delirium related to the high calcium
- Finding of multiple lytic lesions in the vertebrae, ribs and pelvis
- Abnormalities in the liver on imaging studies
- Abnormalities in a brain MRI worrisome for a stroke
Bone biopsy done at Norwalk was non-diagnostic
You were discharged with the diagnosis of:
- Altered mental status
- Bone metastases
- Liver metastases
- Mediastinal mass
- Paroxysmal atrial fibrillation
- Acute ischemic stroke
- Acute hypernatremia
- Acute renal failure
At the time of your discharge, it was assumed that the entire scenario is most compatible with hypercalcemia due to widely metastatic disease to bone, liver and mediastinum. You were given a guarded prognosis and encouraged to seek palliative care support. You were told that your life expectancy is anywhere from 5 days to 5 weeks and that no therapy can be given in view of the renal insufficiency, even if they can identify the source of the metastatic disease.
The good news is that you have definitely defied their prognostication.
Since your discharge:
- Calcium has stayed in the normal range
- Kidney function has normalized
- You are 100% back to your old self mentally and getting physically stronger every day
Review of the images taken at the Massachusetts General Hospital confirmed:
- Widespread bone metastases
- Liver metastases
- The mediastinal mass may be thymus and not cancer
- The brain imaging studies are of such quality that we cannot ascertain that you have had a stroke
- The unique and challenging news is that we still do not have a diagnosis:
We have repeated the bone biopsy but found only necrotic tissue and no evidence of cancer.
We have done a liver biopsy and have found evidence of healing without evidence of cancer.
Lengthy discussions with innumerable consultants specializing in calcium disorders, bone pathology and liver disease have yielded no answers, with many indicating that this is the strangest case they have seen. More importantly, no one has a suggestion of how we can get a diagnosis considering the fact that we have good biopsy specimens of both the bone and the liver.
We continue to be concerned that we may be dealing with widespread metastatic cancer but, with the control of your metabolic derangements, we are in a much better place. We would like to see you continue to get stronger, continue to do what you love to do. We believe that we would have a better idea of how best to arrive at a diagnosis as things develop.
We will be monitoring your blood chemistries closely and will be repeating the scans periodically.
Regardless of what we may eventually find, getting you stronger will put us in a better place to deal with what we may need to deal with.
Wishing you progressive improvement,
Leslie S.T. Fang, MD, PhD”
Three biopsies, including the liver biopsy, and “no cancer found.” Yet, comments on the CAT and MRI scans referenced beliefs about metastatic multiple myeloma or lymphoma. Next, the finding that the liver is “healing.” And then the commentary that this is the “strangest case they have ever seen” because none of those seasoned medical experts attending the liver conference could explain what they saw in that liver biopsy.
What could we (Samahria and I) choose to believe about this unfolding reality? We continue to choose optimism and gratitude and love – big time. But we also believe that all of you are part of what is still unfolding. Thousands of messages and prayers have been sent to me from different continents, at all hours of the day and night (via email, Facebook posts, actual letters). 24/7 support from all of you who chose to visualize and pray. THANK YOU. THANK YOU. THANK YOU. This is currently not only my story… but it is yours, too.
And yes… does your expressed love and prayers matter? To me (and Samahria) personally – of course, beyond measure – but maybe even more than that. Yes, yes, maybe to the universe! I believe the love and support you have sent to me has moved the toe of God. Every single one of you has a played a vitally important part in this “strangest case”. You have made something amazing, something astonishing, something beautiful come to fruition. My gratitude to you all is boundless.
I am still alive today (again, outliving suggested prognoses). My mind is on fire… thoughtful, lucid, self-reflective, inspired…so filled with a magical sense of gratitude/gratitude/gratitude – for all of you. My body still has much healing to do. Will I be here tomorrow or next week or month? Right now – I am alive… and celebratory. And I am open to embracing my present and my future… and open to believing that something rather “miraculous” is happening today, in this moment… and all we have is this moment.