Annual monitoring schedule 2015

Annual monitoring schedule

Labs – Every 6 months to include:  CBC/PLT/DIFF; Chemo Panel (HEME/ONC); CRP Cardiac High Sensitivity currently high at 5.2 norm is 0-3.0;  ALC currently at 5.9 high which is pretty good, norm is 4.5-5.6; ALK Phos is 184 high; Calcitonin is normal, Chrom A is normal

Annual - Chest, Abdomen, Pelvis CT scans were done on 10/30/13 and 2/21/14; to reduce radiation exposure will change this to 1) Galium 68 full body scan possibly at Stanford by 4/30/15, or another US clinical trial by summer 2015 or 2) a tri-phase MRI or 3) an Octreotide full body scan. We need to see the areas with known metastases like the lungs to be able to measure for tumor growth and to look for any new metastases.

Annual - Bone scan will be done annually and does involve radiation. Last one done 5/8/14 will schedule for 2015. Last one showed bone mets in left iliac crest (hip) and lumbar spine 3,4,5 and 6.

Annual - Liver CT scan was done 4/2013 and 1/2015 showing no tumor growth. In the future will request a tri-phase MRI annually to reduce radiation.

Annual – Ultrasound (US) of the thyroid will be done annually to monitor for tumor growth. Several US were done at OHSU in 2013 and 2014 showing tumor reduction. Medullary thyroid cancer was deemed unlikely due to normal calcitonin levels.

Annual - 5HIAA 24 hour urine collection was done in 2013 and again in February 2015. Norm is 6 and below my rate was 0.6 indicating a very low proliferation rate for tumors consistent with the recent liver CT scan showing no tumor growth for almost 2 years from April 2013 to January 2015.

 

 

Now that I'm doing really well I'll probably reduce the amount of writing I'm doing in the blog. I'll still post major mile stones around these biomarkers and scans. If I get into a clinical trial I'll share that as well. For now I'll go to my interview at Stanford in 2 weeks on March 13 and see if I can get accepted there to have the Galium 68 scan.

Thanks so much for your continued prayers and love. As I mentioned in my last post I am really happy! Everything that all of us are doing is certainly working!

All is well - very happy

A friend let me know that the article on death could be interpreted as concerning for those not in regular contact with me. Sorry about that, I am very well and happy.
It is amazing that my 5-HIAA 24 hour urine collection test came back at a 0.6 when the norm is under 6.0. This is the proliferation rate of the existing tumors and this is an excellent result showing no growth. The last liver CT scan also showed no growth with a comparison from all the way back to April 2013.
I don't even have the diarrhea I once had possibly due to getting the Octreotide injection every 21 instead of 28 days now.  I also don't have the flushing or night sweats very often. I have fallen down a bit on the discipline around my diet and have been enjoying some deserts and treats a bit more frequently than I was. I'm still eating very well and have not been loosing weight as I'd hoped I would. I'm getting slightly more comfortable with being 30 pounds heavier than when I was diagnosed in October 2012. Oncologists still suggest I do not try to lose weight since this weight is also a good sign that the disease is not active.

I'm loving my daily exercise routines though. I'm now going to Lotus Yoga in Columbia City 3 times per week. I've discontinued Pilates which I was doing twice a week until this week. I'm doing water exercise at the new Rainier Beach pool once a week and plan on making that 2-3 times per week starting next week. I'm doing the 2.5 mile walk around the Seward Park Loop 3-5 times per week and hope to add Wednesday night Zumba at Columbia City Fitness and Salsa dancing weekly with Peter next week. The Central Area Senior Center has a line dancing class and Chicago Style Stepping class that I hope to check out just for fun. I do love dancing. My son has a monthly art show and African dancing event and I get to dance at that to live drumming.

I always remind myself to count gardening, which I've already begun with this beautiful weather we've had and babysitting as exercise. On Wednesday I still watch the 2 granddaughters all day. These first cousins are just 5 month apart and both of them walking and talking now. It is truly entertaining and rewarding to be a part of their lives. My friend Louise still helps me make it possible to have the grandchildren with her support and love for them as well.  But carrying them up and down stairs, in and out of strollers and highchairs is exercise. On Friday's I have Paityn the youngest and her cousin Kimani the oldest and almost 5. They are a joy to have together too. Kimani is so great with both his sister and cousin. What a smart guy and a sweetheart. I totally adore all 3 grandchildren with their unique and wonderful personalities and spirits.

Off I go to see another movie. We're celebrating the Oscars by trying to see almost all the main movies nominated. Selma is my favorite and I hope everyone goes to see it. I probably won't go see the Sniper movie but tonight it may be Whiplash.

Lastly, travel - I'm already plotting my next Hawaii trip even though we just went to Maui in January. We get to go to Stanford for the Clinical Trial interview in March and to Peter's youngest sisters 50th birthday celebration in California in May. For my birthday in May we take the boat up to Desolation Sound.

My husband, parents, kids and friends continue to help make my quality of life extremely high at this point. I am very happy and satisfied with my life. It is a great feeling to be having so much fun and so many people I love in my life.

Be well everyone!

Interesting post by Ram Das on dying

Dying is Absolutely Safe

Posted March 1, 2010

There is a tombstone in Ashby, Massachusetts that reads, “Remember friend, as you pass by, as you are now, so once was I. As I am now, so you must be. Prepare yourself to follow me.”
Something has happened to me as a result of meandering through many realms of consciousness over the past fifty years that has changed my attitude toward death. A lot of the fear about death has gone from me. I am someone who actually delights in being with people as they are dying. It is such incredible grace for me. In the morning, if I know I am going to be with such a person, I get absolutely thrilled because I know I am going to have an opportunity to be in the presence of Truth.
It is now becoming acceptable in our culture for people to die. For many decades, death was kept behind closed doors. But now we are allowing it to come out into the open. Having grown up in this culture, the first few months I spent in India in the 1960’s were quite an experience. There, when someone dies, the body is placed on a pallet, wrapped in a sheet, and carried through the streets to the burning grounds while a mantra is chanted. Death is out in the open for everyone to see. The body is right there. It isn’t in a box. It isn’t hidden. And because India is a culture of extended families, most people are dying at home. So most people, as they grow up, have been in the presence of someone dying. They haven’t walked away from it and hidden from it as we have in the West.
I was certainly one of the people in this culture who hid from death. But over the past few decades I have changed dramatically. The initial change came as a result of my experiences with psychedelic chemicals. I came into contact with a part of my being that I had not identified with in my adult life. I was a Western psychologist, a professor at Harvard, and a philosophical materialist. What I experienced through psycheldelics was extremely confusing, because there was nothing in my background that prepared me to deal with another component of my being. Once I started to experience myself as a “Being of Consciousness” – rather than as a psychologist, or as a conglomerate of social roles, the experience profoundly changed the nature of my life. It changed who I thought I was.
Prior to my first experience with psychedelics, I had identified with that which dies – the ego. The ego is who I think I am. Now, I identify much more with who I really am – the Soul. As long as you identify with that which dies, there is always fear of death. What our ego fears is the cessation of its own existence. Although I didn’t know what form it would take after death – I realized that the essence of my Being – and the essence of my awareness – is beyond death.
The interesting thing to me at the time was that my first experience with psychedelics was absolutely indescribable. I had no concepts to apply to what I was finding in my own being. Aldous Huxley gave me a copy of The Tibetan Book of the Dead. As I read it, I was amazed to find myself reading lucid, clearly articulated descriptions of the very experiences I was having with psychedelics. It was immensely confusing to me because The Tibetan Book of the Dead is 2500 years old. I had thought, in 1961,that I was at the leading edge of of the unknown. But here was an ancient text which revealed that Tibetan Buddhists already knew – 2500 years ago – everything I had just learned.
The Tibetan Book of the Dead was used by Tibetan Buddhist lamas to read to fellow lamas as they were dying, and for forty-nine days after their death. Tim Leary, Ralph Metzner, and I began to see the Book in metaphorical terms as the story of psychological death and rebirth, even though it was originally intended as a guide through the process of physical death and rebirth. I now think that the idea of dying and being born into truth, or wisdom, or spirit is really what our business is when we talk about death. When you extricate yourself from the solid identification with your body, you begin to have the spaciousness to allow for the possibility that death is a part of the process of life – rather than the end of life. I feel this very deeply.
People ask, “Do you believe that there is continuity after death?” And I say, “I don’t believe it. It just is.” That offends my scientific friends no end. But belief is something you hold on to with your intellect. My faith in the continuity of life has gone way beyond the intellect. Belief is a problem because it is rooted in the mind, and in the process of death, the mind crumbles. Faith, consciousness, and awareness all exist beyond the thinking mind.
I have a friend named, Emmanuel. Some of you have met him through his books. He is a spook, a being of Light that has dropped his body. Emmanuel shares a lot of great wisdom. He is like an uncle to me. I once said to him, “Emmanuel, I often deal with the fear of death in this culture. What should I tell people about dying?”And Emmanuel said, “Tell them it’s absolutely SAFE!” He said, “It’s like taking off a tight shoe.”
In the past, what I endeavored to do in partnership with Stephen and Ondrea Levine, Dale Borglum, and Bodhi Be (Sufi friend of mine) is to create spaciousness around death. We had different programs like the Dying Hot Line on which people could call and have a kind of pillow talk with people who would help them stay conscious through the process of dying. We also – back in the early Eighties – had a Dying Center in New Mexico. My model was that I knew being with people who were dying would help me deal with my own fear of death in this lifetime.
In the Theravadan Buddhist traditions, they send monks out to spend the night in the cemetery, where the bodies are thrown out uncovered for the birds to eat. So the monks sit with the bloated, fly-infested corpses, and the skeletons, and they get an opportunity to be fully aware of all of the processes of nature. They have the opportunity to watch their own digust and loathing, and their fear. They have a chance to see the horrible Truth of what “as I am now so you must be” really means. Seeing the way the body decays, and meditating on the decay opens you to the awareness that there is a place in you that has nothing to do with the body – or the decay.
That combination led me, as early as 1963, to start to work with dying people and to be available to them. I am not a medical doctor. I’m not a nurse. I’m not a lawyer. I’m not an ordained priest. But what I can offer to another human being is the presence of a sacred, spacious environment. And I can offer them love. In that loving spaciousness they have the opportunity to die as they need to die. I have no moral right to define how another person should die. Each individual has his or her own karma – their own stuff to work out. It is not my job to say, “You should die beautifully,” or “you should die this way or that way.” I have no idea how another person should die.
When my biological mother was dying back in a hospital in Boston back in 1966, I would watch all the people come into her room. All of the doctors and relatives would say, “You are looking better, you are doing well.” And then they would go out of the room and say, “She won’t last a week.” I thought how bizarre it was that a human being could be going through one of the most profound transitions in their life, and have everyone they know, and love, and trust lying to them.
Can you hear the pain of that? No one could be straight with my mother because everyone was too frightened. Even the rabbi. Everyone. She and I talked about it and she said, “What do you think death is?” And I said, “I don’t know, Mother. But I look at you and you are my friend, and it looks like you are in a building that is burning down, but you are still here. I suspect when the building burns entirely, it will be gone, but you will still be here.” So my mother and I just met in that space.
With Phyllis, my stepmother, I was more open, and she could ask whatever she wanted to ask. I didn’t say, “Now let me instruct you about dying,” because she would not have accepted that. But then came the moment when she gave up, and she surrendered, and it was like watching an egg breaking and seeing a radiantly beautiful being emerge, and she was clear, and present, and joyful. It was a Beingness that she always at some level had known herself to be. But she had been too busy all her adult life to recognize it. Now she opened to this beautiful Being in the core of who she was, and she just basked in its radiance.
At that moment, she went into another plane of consciousness, where she and I were completely together, just Being. The whole process of dying was just moments of phenomena that were occurring. But when she surrendered, she was no longer busy dying, she was just being . . . and dying was happening.
Right at the last moment, she said, “Richard, sit me up.” So I sat her up and put her legs over the edge of the bed. Her body was falling forward, so I put my hand on her chest and her body fell back. So I put my other hand on her back. Her head was lolling around, so I put my head against her head. We were just sitting there together. She took three breaths, three really deep breaths, and she left. Now, if you read The Tibetan Book of the Dead, you will see that the way conscious lamas leave their bodies is to sit up, take three deep breaths, and then leave.
So who was my step-mother? How did she know how to do that?
Ramana Maharshi was a great Indian saint. When he was dying of cancer, his devotees said, “Let’s treat it.” And Ramana Maharshi said, “No, it is time to drop this body.” His devotees started to cry. They begged him, “Bhagwan, don’t leave us, don’t leave us!” And he looked and them with confusion and said, “Don’t be silly. Where could I possibly go?” You know, it’s almost like he was saying, “Don’t make such a fuss. I’m just selling the old family car.”
These bodies we live in, and the ego that identifies with it, are just like the old family car. They are functional entities in which our Soul travels through our incarnation. But when they are used up, they die. The most graceful thing to do is to just allow them to die peacefully and naturally – to “let go lightly.” Through it all, who we are is Soul . . . and when the body and the ego are gone, the Soul will live on, because the Soul is eternal. Eventually, in some incarnation, when we’ve finished our work, our Soul can merge back into the One . . . back into God . . . back into the Infinite. In the meantime, our Soul is using bodies, egos, and personalities to work through the karma of each incarnation.