Continuing Remission

I repeat my opening sentence from two years ago: The drugs are working and I’ve never felt better. They have been working for the past two years, as confirmed during the quarterly examination I had yesterday. My PSA has been “unmeasurable” (less than 0.02%) throughout the two years indicating, I believe, that the prostate cancer is being held in remission and is not continuing to metastasize into my bones and elsewhere.

Also good news is that I have learned to live with the side effects of the drugs: hot flashes and increasing fatigue. The hot flashes come a few times each day, last for about two minutes and are easy to tolerate, particularly if I can get under one of the ceiling fans in our cottage. The fatigue may be caused as much by aging as by the drugs, and it does hamper the youthful life style I would prefer to be able to maintain. I need a daily nap, which takes an hour out of each day. And I’m sure to fall fast asleep watching TV in the evening unless the program is particularly captivating. Less acceptable is my increasing inability to be on my feet for over one or two hours without running out of energy and needing to rest. But hey, I’m 88, and need to acclimate to the realities of being a senior.

It’s getting easier to acclimate to life as a senior because my life is so good. Kate and I love to entertain our many close friends and local neighbors, and are both very active here at Friends House. I am pursuing two major projects that will provide challenges for all the days I have left, and Kate is deep into enjoying the many opportunities she has here to express her love of gardening. Plus, we are both also involved in the community.

While we spent two and a half weeks in Hawaii earlier this year celebrating Kate’s 80th. birthday, we’re cutting way back on travel; planning, packing, schlepping through airports, all to deadlines, is becoming just too much for our aging bodies and minds. We’re thinking of a couple more trips, one last trip to our time share in Mazatlán, Mexico and one to Glacier National Park, but that most likely will be it. We’re looking forward to our annual week with a house full of old friends in Rehoboth Beach, DE next month, but this will probably be the last year for that joy also; our old friends are getting older, as are we, and it’s getting harder for Kate to pull it all together. So we anticipate retreating into the glorious memories of our many previous trips and continuing to maintain a full and joyous life here at Friends House for as long we can. I’m working hard to assist the drugs in keeping the cancer in remission and my body and mind in good shape so who knows, the remission may continue for years.

Say Halleluiah!

The drugs are working and I’ve never felt better. My PSA is down from 57 on the 17th of July to 8 on the 17th of August! That drop is after I have been on the drugs for two weeks. My oncologist said they are doing what they should be doing: getting the cancer into remission. And I have felt none of the side effects, some of which can seriously impact life style. If the side-effects haven’t showed up during my first two weeks on the drugs, my oncologist says, they most like will not show up. So I proceed with joy continuing the life-style of proper eating, proper thinking, and exercise that seems to be serving me so well.

A bright day.

I started the Xtandi Monday evening and the Lupron (shot of 3-months’ supply) yesterday, and couldn’t feel better after a sound night’s sleep.  The reason: I have new confidence that the treatment plan may buy me at least a few more years and that any side-effects I get may be tolerable.  This from reading up on the androgen deprivation therapy (ADT) that I am getting plus reviewing some posts of Xtandi users on a chat board.  Some of the users are into their fifth year or more!

The ADT guide book recommends all the life-style practices that I have been following for years: healthy diet, regular exercise, right thinking — practices that I believe have kept me fit and healthy .  So, I may have a leg up on minimizing side-effects.  I intend to maintain those practices with a newfound vigor and we’ll see what happens.

Right now, I feel on top of my life, embracing the new reality that I am taking powerful drugs to keep the cancer at bay and buy me time while I do all I can to minimize their side-effects.  I am clearly into the mode of “continually fight the cancer while keeping my life-style as acceptable and contributing as possible.”  I can do it!      

This time it’s real!

Back last December I believed I had metastatic bone cancer and began confronting the potential of leaving my life sooner than I had assumed I would. But that was a false alarm. There was no cancer in my bones then; the breaks in my pelvic bones that oncologists thought were caused by metastatic cancer were caused by the intense radiation treatments I received back in 2012 to treat the prostate cancer.

But a new scan last month, prompted by rapidly rising PSA, showed that the cancer has subsequently metastasized to a bone in my pelvis and to a lymph node. While there is no cure, I will start hormone therapy this week in an attempt to buy time.

The posts from December express well how I think and feel about being in the final stages of my life. The overriding question to me now is how my body will react to the hormone treatment. I’ll start tonight a drug called Xtandi and will receive a shot of the hormone drug on Wed. that will last three months. Both drugs can cause miserable side-effects. I’m trying hard to keep my mind in the moment and not conjure up what effects I might get. I’ll wait and see what actual effects I get and deal with them when I have them.

I will periodically post how I am feeling, what I am thinking, and any significant changes.

A “New Life”

January 11, 2020 9:30 AM

After believing for two weeks that cancer had metastasized to and broken bones in my pelvis, the results of two subsequent scans, a nuclear bone scan and a CT scan of my chest, revealed that the only cancer in my body is the prostate cancer I have been treating ever since Cyberknife radiation failed to kill it in 2011. My oncologist conveyed this news together with the opinion that my low PSA readings make it unlikely that the prostate cancer has metastasized. So what fractured the bones? We examined the scan and observed that the high intensity radiation from the cyberknife could have passed through the bones on its way to my prostate. The likelihood now is that the breaks are radiation induced and not likely to shorten my remaining life as metastatic cancer in my bones would have.

I give thanks for this. And I also give thanks that I did not let the belief I held throughout the holidays that the cancer was likely to shorten my remaining life, possibly to less than a year, interfere with my enjoyment of the holidays. I continued to live in the moment, not allowing the dark thoughts to reduce my joy in the present reality. I also give thanks for the insights and support I have received over the years that have lead me to the beliefs and meditative practices that make this possible.

This experience of confronting and gaining peace with my mortality has elevated me, I believe, into a new phase of my life, one in which I can focus on the challenges of the present free from any thoughts or concerns about my ultimate demise. Not that I had dwelled on such thoughts but, at 85, I did occasionally ponder how much time I have left and how I will die. For two weeks I thought I had the answers and accepted them as OK. Now, I doubt that such thoughts will reappear; I am too focused on living my life. And new insights are flowing into my consciousness, I feel that I am living more “in the light” than ever.

I feel healthier than I have in months. For the past few weeks there has been no pain and few sensations from the fractured bones as there had been, on and off, since last February, when I believe they broke. While I am seeking professional opinions on any changes I should make in my exercise routine and life-style to accommodate the reality of the broken bones and any potential that others might break, I am welcoming 2020 and the challenges it brings me with a new confidence.

I am confident that, as I strive to live “in the light” for the balance of my life, I will complete whatever contributions I am meant to deliver while enjoying each day and my relationships with others.

Broken Bones

December 23, 2019.  5:00 PM

The oncologist wasted no time pulling up on his computer the CT scan that brought me to his office, and zeroing in on two fractured bones in my hip.  Both are “superior pubic ramus” bones; the right bone shows a crack and the right a clear gap.  It was easy to see that they are the cause of the discomfort and occasional pain I feel in my legs. 

The breaks were caused by cancer in the bone, but the doctor explained that more scans are needed, and possibly a biopsy, to determine where the cancer originated.  He thinks that my PSA of 11.1 is not high enough to assume that it is from my prostate.  So I have two additional scans scheduled for next week to search for other possibilities, a nuclear bone scan and a CT chest scan.  I will see the doctor again next Friday to get the results.  Hopefully, we’ll know then where the cancer is coming from and if it is present in other bones.  I’m hoping that we can also discuss treatment options.

For now, I have been advised to accept that I’m carrying weak bones around, bones that can break easily, so I need to be very cautious and use a cane when I walk.  Cancelled is my joining Kate in a trip to a beautiful sea-side resort in Cabo, Mexico for the first week in January.  The doctor said, “Absolutely not.”

So, I embark upon adopting a more sedentary lifestyle while pursuing my legacy project with more vigor.  I do so with the mindset that this is a new adventure, a new challenge in my life, and I have loved adventures and challenges throughout my life. 

A big day after a great weekend

December 23, 2019, 8:00 AM

I am anticipating that Kate and I will return from my appointment at 2 this afternoon with Dr. Reilly with much to contemplate and plan for.  I await his judgement on my condition and his recommendations with interest but not dread; I need his judgments and recommendations if I am to make the ultimate decisions that chart the balance of my life, that define the pathway I will take to my demise.  And I am grateful that my lack of fear of death permits me to approach that task with a clear mind and tranquility.

The beautiful weekend with my family in CT reinforced that tranquility with the power of love.  I loved every minute of being with my son, daughter-in-law, grandsons, and their brides to be (in 2020), daughter and her husband.  I loved relaxing and chasing joyous memories in the home that so reflects my son’s and daughter-in-law’s love of antique tools and bottles, which are displayed so attractively throughout.  How fortunate I am to have these loved ones in my life and to be able to, on occasion, connect with them physically.  This was a joyous visit, with no interference from concern about what I might hear from the oncologist this afternoon.         

A week later

Friday, Dec. 20, 2019

So I have now been living a week with the reality that I have metastatic bone cancer which will most likely shorten my life, perhaps to a year or so. I will continue to have to wait for answers to the many questions this raises until Monday, when I meet with an oncologist. Hopefully, he will tell me what treatment options are available, their side effects, and the estimate of life expectancy for each; how soon I may lose the use of my leg, and how my lifestyle may be affected as the disease progresses; how the disease may eventually take my life; whether we should test for possible spread of the cancer to additional organs; etc., etc., etc.

I feel blessed to report that such questions, while they enter my consciousness at times, do not become attached emotionally; they do not pull me down. They would if I made up answers and let myself become entrapped in fear generating hypothesis. But I practice living in the moment, so find it easy to dismiss such questions because they have no reality in the moment. They may next Monday, when I discuss them with the oncologist, but I refuse to let them affect my life until then. Stay tuned.

This has truly been a magnificent week for me. I feel raised up to a higher plateau of living and contributing than ever before. My love for Life, mine as well as all life, is with me throughout each day; my sense of mission is stronger than ever as is my confidence that I will succeed in achieving the goals that Life intends me to achieve; the silly demons of doubt and fear that occasionally held me back from doing my best have retreated to their caves; I find joy in just about every moment. In short, I feel well equipped to proceed down the new pathway that life abruptly placed me on last week. And I look forward to chronicling my journey here.

The day after I heard

Saturday, Dec. 14, 2019

I have been a sound sleeper for all of my life (except for the nighttime toilet visits that come with advancing age) but awoke at 4 am this morning. Naturally, my mind was focused on what I had heard yesterday: that I have an incurable cancer that will hasten my demise. Specifically, my thinking was focused on the big question of how do I integrate this reality into living my life and reaching the life goals to which I am passionately attached but have not yet achieved?

For many years I have started my days with coffee and meditation ( I have been either retired or working out of my home since 1995, so can afford the time). The meditation continues to have an extraordinarily profound effect on my life, but that’s for another blog. Today, I sought guidance in how to adapt my life to the new realities (I have believed strongly throughout my life in a Universal Higher Power, but that also is for another blog). Then, as I frequently do, I summarized the insights I received into my journal. I present that entry here, for insights into the directions my “new” life is taking.

Dec. 14.  Big New Chapter . . . in my life – most likely the final chapter!  I learned yesterday that the pain in my right leg/thigh is not caused by Lyme disease as I had thought, but by cancer in the bone that has metastasized from my prostate.  A quick Web search for potential prognosis was not encouraging: the only cure is to stop the prostate cancer from metastasizing, and the dreaded hormone therapy plus chemo therapy and radiation may be the only way to attempt to achieve that; a 2018 study found that 6% of patients with bone cancer live five years. 
     So . . . I am truly confronted with my mortality for the first time in my life.  I most likely will not live well into my 90’s as I had thought possible until I got the call yesterday.  I may not even see 88, the target that has been in my mind most of my earlier life.  This leads me to focus my thinking on:

  1. How can I best live what time I have left to learn and exemplify life lessons in how to leave life?  I believe that my philosophy on how to best life life, gleaned from years of searching, is real and sound, as I am attempting to prove by living it.  Now it is time to learn and exemplify how to best leave a good life.
         I cannot just turn decisions that would affect the quality of my remaining life over to doctors, not out of fear of pain and suffering, but out of the belief that an extended downhill slide is not how a beautiful life should end unless that life remains beautiful to the end. I may reject hormone or chemo therapy if they are recommended.
  2. How can I best spend the time I have remaining documenting the philosophy of life that I hold most dear, transferring from my mind and copious notes the theories and practices that may have value to others, like A Course in Caring?
         Initial thoughts are to update my Web with my philosophy and to use my blog to convey key points and techniques.  But this will, most likely, be second in priority to developing my vision for a major movement to discover and celebrate human spirituality.  I have much to do before I die, which may influence my decisions on what I accept from the doctors and what I reject.

     Then there are immediate, practical decisions that must be made, like how best to advise my loved ones about this reality.  My thinking now is to:

  • Hold any “announcement” until after the holidays, for two reasons: 1) to not impact the joy of the holidays, and 2) to see what the oncologist and I come up with for next steps and the prognosis that comes with them.
  • Ensure that this change in my life does not deter from my ability to do my job and fully support Kate as we continue preparations for moving to Friends House.

     The good news is that I feel very peaceful and aligned with the Life Force that guides me, confident, as I have been for most of my life, that “. . . goodness and mercy shall follow me all the days of my life . . .”  I also feel the joy of facing new challenges, new opportunities to apply my philosophy to how to best live the final chapter in my life.

The day I learned that I have an incurable cancer

Friday, Dec. 13, 2019.

I was awakened from my afternoon nap by Kate with a telephone. Dr. Jackson, my GP, was calling with the results of the CT scan taken of my hip the day before. I had seen her the previous week because the pain in my right leg had been persisting for a month. I had ascribed it to the Lyme disease bacteria that resides in my body and comes out of remission from time to time and attacks some weaker part of my body, like muscles in a leg. But now I felt it was time to see if there may be other causes for the pain.

“It looks like metastatic bone cancer from your prostate,” she pronounced, then advised that I see a medical oncologist as soon as possible.

I knew that this was not good and dug into research on the Net to see how bad it might be. The results: it’s incurable, it can bring considerable pain, and my chances of living 5 more years one study places at 6%.

O.K. Now my life pathway has shifted dramatically from believing that my lung and prostate cancers are under control, that the infrequent Lyme disease episodes are tolerable, and that I may live well into my 90’s, at least another ten years. My new pathway is set in the reality that I will be living the balance of my life with an incurable cancer that may take me within a year or so.

My initial reaction was “What must I do to adapt to this new reality (I have always loved challenges and problems to solve, and that drive kicked right in)?” I realized that I needed more facts, more questions answered, like what stage is the cancer now, what are the treatment options and the longevity projections? So I made an appointment with the oncologist Dr. Jackson recommended for a week from this coming Monday. I will have to live with many unanswered questions until then. My thinking turned to “How will I keep from falling into a whirlpool of worry, fear, anger, and self-pity?”

The initial answer came as I recalled three fundamental beliefs that have been strengthened as I age.

The first is feeling extraordinarily grateful for the 85 years I have lived so far. I have lived a full, most satisfying and rewarding life, and know that I could die tomorrow with no regrets. So I learned today that I have a limited number of tomorrows left. That just brings me the challenge of how best to use those tomorrows and, hopefully, make my life even more satisfying and rewarding.

Second, I concluded years ago that I do not fear death. I believe (as did Socrates) that death is either a sleep from which I will never awaken or that my soul will continue to exist, possibly as part of a cosmic consciousness.  I see no other possibilities.  So if one of these must be true I see nothing to fear.

Third, I have believed throughout most of my life that life is good and merciful — because it has been for me. It has been mostly good, but the few times it has been less than good it has been merciful. How powerful this belief is in helping me cope with what I learned today.

So I went to sleep easily and at peace, confident that guidance will be forthcoming in how to best traverse this new, final pathway in my life.