Monthly Archives: November 2014

Nov 27, 2014: Intracranial Radiation Done

Well … it has certainly been an eventful week.  As mentioned in my last blog entry (Nov 23, 2014: “The Plot Thickens”), after the enlarging dura lesion was seen on a brain MRI on Nov 18th, I was advised to undergo three high-dose stereotactic radiation treatments to try to shrink it down and hopefully eradicate it completely.   This kind of radiation procedure is a true wonder of modern medical technology, but not easy to prepare for or undergo.

My radiation and medical oncology teams moved heaven and earth to make it possible for me to get this done quickly, and I’m profoundly grateful for their efforts and work on my behalf — particularly given the extremely serious nature and location of this lesion.  It feels like a miracle to have been able to get this done during the Thanksgiving holiday week.  I’m glad to report that the treatments were completed yesterday as planned, and went well.  Although it is too soon to say what the ultimate results will be, I am already noticing what seems to be signs of an early response. I had developed a slight anomaly in my left eye, which the doctors thought was related to the dura lesion slightly pressing on the visual cortex in the back of the brain. Fortunately, the visual anomaly seems to be a bit better, and the headaches seem to be better too, which are hopeful signs.

It is hard to adequatley describe my experience with the deep physical and emotional vulnerability that has arisen in dealing with cancer.  But I feel over today to share a few additional thoughts.

One of the great paradoxes of life is that we are all, in my experience, a mysterious blend of being extremely powerful, and at the same time, ultimately vulnerable and powerless in so many ways. We are capable of thinking, planning, envisioning, creating, and accomplishing such great things in life.  Even beyond that, I believe we are eternal beings, intimately and inseparably connected with the Divine, and to what I — and so many others — believe is the most powerful force in the world: love.  At the very same time, we are also mortal, and ultimately, completely exposed and vulnerable to forces and events that lie far beyond our control.  These events, as we all know, can occur both in the outer world … and within our own physical bodies.  Illness and infirmity — not to mention so many of the utterly distressing events happening in the world around us — make our vulnerability abundantly clear.

Part of what makes the confrontation with deep vulnerability even more difficult is the extreme emphasis that our culture and world places on of “doing” versus “being.”  As I think we would all agree, our world honors action, accomplishment, and achievement … and tends to shun weakness or vulnerability.  There is an almost overwhelming pressure to be healthy, strong, happy, and successful.  We tend not to feel comfortable making space for the stillness, silence, and the simplicity of pure being.  Even more, we do almost anything to avoid the dark and more difficult aspects of life, including fear, pain, suffering, illness, depression and vulnerability … and least of all, our mortality.

Without a doubt, my own ordeal with cancer, and all that has been consumed in my life as a result, has made these issues of vulnerability and loss of control more personal and real than I could have ever imagined.  Being stripped of the ability to engage in the deeply meaningful work that I loved so much, to plan and control my schedule, to be more connected with family and friends, and to do so many other things that I loved, has been very painful.  Before being diagnosed with cancer, I was blessed with incredible physical health and stamina.  I worked for years with barely a cold or flu, and was so blessed to be able to help and support so many others on their cancer journeys and to be a source of love, comfort, compassion, and support for them and their families.  It’s not that I was ever immune to great personal suffering and loss in my life; like so many of us, I experienced a great deal of pain, loss, and heartbreak.  But I was also very fortunate to have a powerful and inspiring vision and purpose for my life, and a profound spiritual path, all of which I followed with my whole heart and soul.  So much of my life, and my identity, was as a “doer” and “helper.”  The cancer journey has forced me into the underworld of human existence: where pain, suffering, sadness, loss, vulnerability, uncertainty — and the need to be open to surrender, and receive — reside.  Now, I so much more intimately know and understand what countless people throughout the world are experiencing deep on the inside when their health and the illusion of control have been stripped way.  As painful as this process has been for me, the deeper compassion, understanding and connection with these more difficult dimensions of life has been a profound gift.

There is so much more that I can and want to share about all this, but I will finish for today with two final thoughts.

First, many of you have shared with me the pain of feeling at a loss about how to help me more as I traverse this rocky terrain.  I understand, and wish there was more as well!  I will reach out when something I see something tangible you can do.

In the meantime, however, please know that your thoughts, prayers, and expressions of love and caring are profoundly healing and meaningful in and of themselves, and mean the world to me. The comments you have shared on this blog in particular have been and continue to be a great comfort for my heart and soul.  They help me to feel more connected, which was one of my intentions in creating the blog.  So, it is working its magic.  Thank you for taking the time to sure in this way, and please continue to stay in touch as you feel called and inspired.  It is a great gift.

Wishing you all a joyous and wonderful day of Thanksgiving …

Nov 23, 2014: The Plot Thickens

The past number of days have been another extremely intense period of time.  In fact, they have been among the most intense of my cancer journey so far.  The plot has really thickened with my health situation, although there are also some important, and hopeful, silver linings in the midst of what is happening.

The headaches I’d been having, which I mentioned in my last blog post on November 18th, unfortunately, persisted.  In response, my medical oncologist (Dr. John Fleagle) ordered another MRI scan of the brain, which I’d been hoping to avoid.  We already knew that there was small — but abnormal, and worrisome — lesion involving the thick membrane (called the “dura”) which surrounds the brain beneath the skull.  Much to our dismay, the repeat MRI scan this week showed that the dura lesion has increased significantly in size compared with the last MRI on October 2nd.  This is a very scary development because of the risk that it could penetrate through the dura and into the brain.  If so, this would be an incredibly serious — even life-threatening — development.  On the positive side, there does not appear to be any evidence of actual brain involvement at this time.

After an intense schedule of additional scans and treatment planning activities over the past few days, the lesion was deemed to be treatable with high-dose stereotactic (focused) radiation.  I’m scheduled to receive three radiation treatments, one per day, beginning on Monday, November 24th.  It took a lot of hard work on the part of my radiation oncologist (Dr. Marie Klish), her terrific team, and my medical oncologist as well, to get everything organized so quickly.  I am very grateful for their amazing help and efforts on my behalf.

In advance of the radiation treatments, on the evening of November 21st, I also underwent a follow up MRI scan of my cervical and thoracic spine.  This was to assess what is happening with the numerous spine lesions we’ve been treating for the past many months.  I was able to review the MRI images with the radiologist and was relieved to see that, compared with the last spine MRI scan (also on October 2nd), the vast majority of the spine lesions appear to be stable in size.  One very worrisome lesion in particular, involving the T3 vertebral body — which was noted to be pressing on my spinal canal on October 2nd — has shrunk significantly and is no longer pressing on the spinal canal.  This was a huge relief.

These findings suggest that the spine lesions have responded well to the 2 cycles of Doxil chemotherapy I have already received.  I feel strongly that the numerous other healing modalities I’ve been pursuing have had a very important and positive impact as well, even though, of course, I have no proof for this.

I am looking forward very much to having the upcoming radiation treatments completed.  I’ve already received similar radiation treatments to six separate bone lesions since September 2013. These treatments are not easy to go through, and can be physically as well as emotionally exhausting.  When radiating a spine lesion that encroaches within millimeters of the actual spinal cord — or, in this case, when radiating the skull and underlying dura — the treatments require patients to be tightly immobilized on the radiation table with a hard, moulded plastic mask that covers the face and neck.  It is a surreal experience that I call “Start Trek Meets the Game of Thrones,” because of its application of some of the most sophisticated technology available in all of medicine … while being strapped to a hard, cold table, in an almost barbaric, medieval way, unable to move, while the whole procedure is carried out.

I am praying hard that this set of treatments will go smoothly, and will be successful.

After the radiation treatments are completed, I will have a two-week period of time to recover before most likely continuing on with more chemotherapy.

Confronting this enlarging intracranial lesion this past week was very traumatic — especially as someone who understands how dangerous and threatening intracranial tumors in particular can be.  There are also potentially very serious risks involved with the radiation itself.  I never imagined I would develop an intracranial lesion, let alone need to undergo radiation to my head.  This lesion has definitely increased the seriousness of what I am facing, and forced me into an even deeper confrontation with mortality … and the ongoing reality of living in the unknown each day.  There are parts of me that are quite worried and scared by this whole turn of events.

At the same time, I continue to feel a deep hope and conviction that I will respond well to these upcoming treatments, and be able to continue to receive, and tolerate, additional systemic treatment … and continue to live.  My heart is filled with love and appreciation for the absolute beauty and preciousness of this life — even with its enormous sorrows, mysteries, paradoxes, insanities, and injustices.  I remain deeply inspired by so many things I hope to be able to experience and contribute in this life.

Throughout it all, Kristina has continued to be such an amazing beloved support, ally, and love.  I am so blessed by her presence in my life.  I hope to share a special blog about her soon.

Meanwhile, I want to say “Thank You” again to so many of you who have reached out and sent me such incredibly beautiful, warm, and heartfelt expressions of love — especially in your comments and replies on this blog.  I am very grateful and touched.

Nov 18, 2014: Medical Update

The last months of my cancer journey have been a wild, bumpy, and extremly challenging time.  I’ve now been continuously receiving different chemotherapy and/or radiation treatments since March 2014, to try to stop the progression of bone metastases noted in multiple sites, including in the spine, pelvis, and hips.

Here is a “high-level” overview, just to give a sense of what I’ve been through in this time:

In March 2014, I received high-dose stereotactic (focused) radiation treatments to two separate, painful bone lesions.  The treatments were effective in alleviating pretty severe pain in these areas, but were extremely exhausting and debilitating.

In March, April, and May 2014, I also received three months of treatment with an oral “targeted” therapy for metastatic soft-tissue sarcoma, called pazopanib.  This drug proved to be not only very toxic for me, but ineffective as well.

In June 2014, I received high-dose stereotactic radiation treatments to three additional bone lesions.  The treatments were also helpful in alleviating the associated bone pain, but were in some ways even more difficult to go through.

Extensive restaging scans in late June showed further disease progression.  In July and August 2014, I then received 6 cycles of chemotherapy with two intravenous chemo drugs, gemcitabine and taxotere.  These chemo treatments were also rough going, but scans in early September suggested that the drugs were working.

On this basis, I began an additional cycle of treatment on September 9th.  Unfortunately, I developed a severe and unexpected adverse reaction to the chemo, which landed me in the hospital for three days.  The reaction precluded me from receiving any more gemcitabine/taxotere, despite their apparent benefit.  This was a painful fork in the road.  It took about a month to recover from the adverse reaction and get back on my feet.

In early October, I underwent another set of restaging scans, which, unfortunately, showed further progression of the bone metastases during the time I was off treatment (from early September).  Another painful fork in the road.  Because of this, on October 9th, I began treatment with third line chemotherapy; this time with a drug called Doxil, which I am currently still taking.  Doxil has definitely been easier to tolerate than gemcitabine/taxotere overall, but it, too, has some significant side effects, including pretty severe headaches, fatigue, and deep malaise.

In the midst of this (also in October), I underwent an emergency upper endoscopy procedure to address symptoms of a separate medical condition — known as achalasia — that was diagnosed at the time of my initial cancer surgery, in November 2011.  The procedure was traumatic, but necessary for me to be able to adequately swallow food.

On November 4th, I received cycle 2 Doxil.  I was hoping that this second cycle would not be as difficult as the first, but I’ve once again had a very hard time with headaches and fatigue.

Unfortunately, it is clear that my body has a particularly hard time with drugs and medications.

Throughout this entire time, I have been followed weekly by my oncologist in Boulder, Dr. John Fleagle — who is incredibly kind and caring, and has been an important ally and guide for me throughout this entire journey.  The ongoing headaches are confusing and worrisome — for me and Dr. Fleagle — in part because an MRI scan of my brain in early October revealed skull metastases and enhancement of the dura in one small area inside the skull, near a skull metastasis, of unclear significance.  Thankfully, no evidence of brain metastases was seen.

If the headaches don’t resolve soon, I will likely need to undergo another MRI scan of the brain to rule out the possibility of brain metastases, or some other area of disease progression in the head.  This is obviously very stressful and concerning.  On a positive note, the Doxil does seem to be helping to relieve the considerable bone pain I’ve had for quite some time related to bone metastases in other sites.

For now, I am taking things one day, and one week, at a time.  If things remain stable, if the headaches improve, and if I don’t develop any new or worrisome symptoms, the tentative plan will be for me to receive a third cycle of Doxil in early December.  On the other hand, if things progress in any way before then, I will likely undergo another set of restaging scans to evaluate what is happening more thoroughly.

It is hard to express what it is like to live in the midst of so much uncertainty, physical pain, and fatigue.  Despite fairly discouraging statistical odds, I am choosing to live each day — as best as I can — with faith that I will somehow find a way back to health and life that has meaning and purpose beyond battling cancer.  Even in the face of all the difficulties, I continue to feel a deep, fierce desire to live, and to heal, as fully as possible.

I think it is important to mention that along with conventional cancer treatment I — like so many other cancer patients — have been actively pursuing many different forms of complementary and alternative therapies that have been a vital part of my healing path and process.  I hope to share more about these another time.

Going through all this has brought me to a depth of vulnerability that I have never imagined, let alone experienced, before.  This experience of extreme vulnerability has changed me in profound ways. In such a deep time, the love and connection with others I have in my life — especially my beloved sweetheart Kristina Holmes — have transformed a journey that could otherwise have felt unbearable, into something that I have somehow been able to endure, through what feels like Grace.  There is no doubt that along with great pain and loss, my cancer journey has also been filled with many unexpected and remarkable blessings.   I am incredibly grateful for those blessings, and for the continued, unmistakable presence of Spirit in my life, at every step along the way.