Monthly Archives: March 2015

Mar 27, 2015: Hospitalized

I am writing with another update; this time, from the University of Colorado Hospital, in Denver, where I was admitted on March 18th.

It is very strange to be writing from a chair next to my hospital bed, but it somehow feels important and helpful for me to share a bit of what has been going on.

These have been very difficult and critical days.

On Sunday morning, March 15th — after struggling for a number of days with worsening bone pain that had become increasingly impossible to control, along with increasing generalized weakness, a feeling of shortness of breath when lying down, and episodes of severe nausea and vomiting — I went to the ER at Boulder Community Hospital, in Boulder, CO.  Low and behold, I was found to be quite sick with pneumonia, dehydration, and anemia. I had also, quite clearly, become intolerant to the increasingly large doses of narcotic medications I had been taking for so long to manage the bone pain I’ve been struggling with for so many months.  The pain was now very severe.  After being admitted to the hospital, it was a huge relief to finally be able to collapse into the care offered by the doctors and nurses who were caring for me.

It soon became evident, however, that I was going to need even more expert and intensive treatment for the bone pain.  So — to my great fortune — on Wednesday, March 18th, I was transferred to the Acute Pain Management Service at the University of Colorado Hospital, in Denver.  This group is one of the few in the region that offers a fairly new and radical approach to treating intractable pain and opiate intolerance with a three- to five-day infusion of IV ketamine.  Ketamine is a powerful anesthetic and pain medication that can reset one’s opiate receptors when used in this way, and — for many patients — allow re-introduction of a simpler and more effective pain management regimen.  The technique is fairly new, and somewhat controversial.  It requires constant, careful monitoring of the patients’ cardiac and respiration functions.  But it is slowly gaining acceptance throughout the country as more and more studies show its potential and effectiveness.

The infusion started late in the evening of my my arrival on March 18th, and in my case, it ended up being a five-day infusion.  One of the hallmark features of ketamine can be a dissociative experience of feeling separated in some way from the extreme, painful drama going on in the body, and being able to observe one’s pain from a more objective perspective.  At the same time, it can deeply soften the normal psychological boundaries and defense mechanisms that arise in many situations in life, but especially in a serious, or life-threatening, circumstance.  In this context, the medication can promote a powerful relaxation of those ego boundaries and defense mechanisms.  Deep emotional lability and intense feelings of loss of control can surface.  Buried memories, visions, emotions, and insights can come flooding out.  And the process continues 24/7 … for five days.

This is certainly what happened to me.  The five-day infusion was as emotionally cathartic as it was helpful from a pain management perspective.  But is was not an easy journey to take.

After the ketamine infusion was completed on Monday, March 23rd, I was transferred to the oncology floor, where I am still residing.  We are now in the post-ketamine phase of the treatment. I’ve been started on methadone and IV dilaudid for breakthrough pain. It seems to be working, as the bone pain is under much better — but still not complete — control.  I am hoping that things will continue to improve and I will be able to go home sometime next week.

Meanwhile, in the midst of all this, I had a number of other serious medical issues that required attention.  I’ve been receiving IV antibiotics and supplemental oxygen for the pneumonia, which is also slowly resolving.  I’ve needed numerous IV sticks for continuous IV access and, after multiple painful attempts to start IV’s in my arms, I finally had a PICC line placed on March 24th for reliable IV access — another invasive procedure which I had hoped to avoid.  I was also suffering from increased pain with swallowing related to my underlying achalasia and the recent (February 9th) lower esophageal surgery I underwent. This pain was now exacerbated by the recent episodes of nausea and vomiting I’d had, caused by narcotic overload.

Very significantly, on March 11th — just a few days before coming into the hospital — I also began taking the daily oral targeted therapy vismodegib, which was recommended by multiple physicians to try and gain control of the cancer.  So far, I seem to be tolerating it fairly well, which is a huge blessing and relief.  We shall see in time if the drug is effective, or not.  But at least for now, it doesn’t seem to be hurting me.

The ordeal of these hospitalizations, and the intensity of the issues I’ve been dealing with, have been profoundly exhausting, painful, and scary.  They have brought the reality of my mortality, deep vulnerability, and lack of control — and the very real possibility of death from this cancer — more fully into my conscious awareness than ever before, by far.  All I can do is continue to walk the path each day, as best as I can, and see where it leads, trusting that I am somehow, and unmistakably, being guided in every step.   I know this is the deepest truth, even when I feel my heart breaking from the ordeal I have obviously, somehow, been destined to undergo at this time in my life.  I have been pushed to my limits, and beyond, over and over again — especially in this most recent process of dealing with these multiple problems, in the setting of such abundantly clear uncertainty and the unknown.

Kristina has been with me — as usual — every step the way.  She has been spending much of every day with me in the hospital, and staying at a nearby hotel in the evenings so she can get some rest.  We have both been exhausted by this process, and look forward so much to the possibility that things will, indeed, become stable enough so I will be able to safely, and confidently, return home sometime next week.  I am so blessed by her love and presence in my life.

I also want to acknowledge and honor the remarkably kind, caring, expert care and attention I have received from so many doctors and nurses at Boulder Community Hospital and the University of Colorado Hospital over the past two weeks.

If some of you have felt how even more out of touch I’ve been during this time in particular, I hope this blog post helps explain how utterly impossible it has been for me to stay in touch.  As always, this is doubly painful to me, because I treasure our contact so much.   It helps me to heal — especially when the night is darkest, as it has been recently.

So, until we can be in direct contact again, I send my love and gratitude for your continued love, prayers, caring, and good wishes.

 

 

Mar 8, 2015: Difficult Choices

This is a difficult blog post to write and share.

On February 23rd, I underwent CT scans of my chest, abdomen, and pelvis, as scheduled.  Compared with my previous scans in late January 2015, the new scans showed mild further progression of the many bone lesions I have been dealing with now for nearly two years.  The chest CT scan also showed a small (0.5 cm) lesion in the right lower lobe that is worrisome for a possible lung metastasis.  This was obviously disappointing to see.

On March 3rd, I returned to the University of Pittsburgh Hillman Cancer Center for a follow-up consultation with Dr. Tawbi, the wonderful oncologist who I originally met on February 3rd.  We reviewed everything in great detail.   There are three basic treatment paths I could pursue at this point.

The first path would involve treatment with one of the emerging immune-based therapies that have received so much promising attention in the oncology world over the past couple of years.  These drugs are not FDA-approved for treatment of sarcoma.  There is one trial that would be very relevant for me.  Unfortunately, however, as it turns out I am not eligible to participate because I do not meet the trial eligibility requirements.

The second option would involve trying one of two “targeted” drugs that have shown activity against cancers that have a gene-mutation that was discovered in the genome sequencing assay performed on my tumor about a year ago.  One of the drugs is available only in a Phase 1 clinical trial — which I am eligible for, but do not feel I can participate in because the logistics involved are overwhelming (for example, I would have to either move to Pittsburgh for two-three months, or travel there weekly for the first nine weeks — which I am just not strong enough to take on.)  The second drug is available off-trial, and has shown promise for patients with the gene mutation I have.

The third approach would be to pursue more conventional chemotherapy treatments, of which I have already received 11 cycles of two different chemo regimens (after three months of a different targeted drug, in the spring of last year). The chemo drugs did show evidence of improvement … but were accompanied by very difficult side effects.

Dr. Tawbi, and several other specialists I have consulted, have encouraged me to go ahead try the targeted therapy that is available to me right now.  Of course — as with any anti-cancer medication — there are very likely going to be more toxicities and side-effects.  This is no small matter, because I continue to struggle mightily every day with severe bone pain, requiring very high doses of pain (and other) medications, and fatigue.  I am also still healing from the achalasia surgery I underwent last month.  In addition, even though this drug is targeted against my particular gene mutation, it is unclear how well it will work.  Furthermore, taking this drug now (or any other anti-cancer drug, for that matter) will likely make me ineligible for a variety of potential clinical trials in the future, because it will be my fourth line of systemic treatment.  Most clinical trials require that patients have only received three prior lines of systemic treatment.

I acknowledge that the past number of weeks have been qualitatively more difficult than perhaps at any other time in my journey so far. The pain and fatigue that I have been experiencing have reached a new level.  The clinical data for any of the drugs available to me is also limited and uncertain.  Enduring this level of pain while also trying to make a decision between several less than optimal treatment choices has been extremely hard.  At times, I have questioned whether I even want to continue with treatment at all.

Nonetheless, after agonizing over these very difficult choices, I am inclined to go ahead and give this new targeted drug a chance.  Despite the challenges, I feel compelled to continue to try to find a way — at the very least — to stop the progression of my cancer.  This drug (that targets the genetic mutation I have) offers that chance, and even the possibility of a very meaningful response.  But it is unlikely to be an easy path.

I will be meeting again with my local oncologist early next week, and expect to start the new treatment soon thereafter.

Meanwhile, I want to say “Thank You” again for your continued love, prayers, and good wishes.  There is so much that Kristina and I have had to deal with in all of this.  Walking the cancer journey consumes so much time and energy, and has been exhausting.  This continues to make it extremely hard to stay in touch with family, friends, and colleagues more directly, which is very painful for me.  It is a great blessing to be in touch through this blog, and to receive your expressions of love, encouragement, and support.  Thank you again for reaching out, as you are able.  It means a great deal to me.