Monthly Archives: February 2015

Feb 21, 2015: Post-surgery update, and next steps

A lot has happened since my last update on February 6th, and there is a lot coming up in the next two weeks.  I’m writing with another brief update.

To begin, I underwent the “POEM” achalasia surgery on February 9th, as planned.  This was undertaken to relieve the hallmark symptom of achalasia, which is difficulty swallowing due to constriction of the sphincter between the esophagus and stomach.  The surgery itself went well, but it was exhausting and the recovery has been more difficult and longer than expected.  I am still regaining my strength.  The swallowing symptoms — while definitely improved — are taking time to resolve as well.

Since coming out of the surgery, I’ve also had some very difficult, recurrent bone pain, particularly in several distinct skeletal sites (especially the lumbosacral area) which has puzzled me and my physicians.  It may represent tumor progression in these particular areas, or an unusual interaction with the general anesthesia, a combination of both, or something as of yet undetermined.  It is disturbing not to know.  However, I am very blessed to have the guidance of a wonderful palliative care/pain medicine specialist — Dr. Beth Mazzola — and she has been a God-send in helping me get the bone pain under control.   This is finally happening.   It has required taking very high doses of narcotics — which have their own unique array of unpleasant side effects — but there has definitely been improvement in the past few days.

In the midst of this, there has been one extremely positive development.  This past Tuesday (February 18th), I had a follow up MRI of my brain.  This was done to assess the effects of the stereotactic radiation I received this past November, as treatment for the very scary intracranial lesion involving the skull and underlying dura that was originally discovered last October.  Remarkably, the dura lesion was essentially completely resolved.  There are also no new lesions noted anywhere in the brain.  It is hard to overstate how positive and important this result is.  At the least, it opens the doorway for me to continue pursuing additional treatment options for the cancer as a whole.

As I’ve mentioned before, the treatment options available to me at this point are, unfortunately, limited — and it is not clear at all which one will be the best and most accessible next choice for me.  As a next step in trying to determine this, this coming Monday (February 23rd), I will undergo CT scans of the head, chest, abdomen and pelvis.  These scans will give a high-level overview of what is happening with the disease throughout my body, including whether or not there might be a bony site that needs radiation treatment.  The scans will also be important in determining my eligibility for potential enrollment in several clinical trials that my consulting physician at the University of Pittsburgh Hillman Cancer Center — Dr. Hussein Tawbi — is encouraging me to consider.

The trials he is proposing are complex and involve cutting-edge targeted therapies.   One involves a drug that can unleash the body’s immune system to more actively fight the disease.   The other two trials involve different drugs that specifically target an unusual gene mutation which was found to be present in my own cancer genome sequencing, performed in November 2013.  Each of these different trials have stringent eligibility criteria and unique logistical requirements, and each of the drugs involved have their own spectrum of side effects.  My eligibility for the trials is still uncertain, and I am not sure about which I would choose — if offered.

I will learn more about all of this when I return to see Dr. Tawbi in Pittsburgh on Tuesday, March 3rd — if I am strong enough by then to make the trip.   If I cannot participate in any of the trials, or feel that they are just not right for me — for whatever reason — I will have to make a decision about whether or not to continue on with more conventional chemotherapy treatments.   These choices are also not easy or clear at all.  I will just have to cross those bridges when I get to them.

In the meantime, my plate remains very full with continuing to heal and recover from the recent surgery; continuing to manage the bone pain I am experiencing; going through with the CT scans scheduled for Monday (February 23rd); and preparing for the trip back to Pittsburgh.  I also continue to do everything else I can to help myself get well, as much and as often as I can in the midst of this whirlwind.

As always, the loving presence and support of my beloved Kristina makes all the difference in the world.  It is hard to imagine walking this difficult path without her love and support.  It is also wonderful to have her mom, Jeanne Holmes-Buttner, visiting us for four days from her home in Florida.

The kind and incredibly beautiful comments and posts from so many of you also remain a great blessing for me.  Managing everything required to walk this path (and there is so much more I could say about it all ….) is not only exhausting, but extremely time consuming as well.  Staying in touch via the blog means a great deal.  Thank you again for taking the time to read the blog, and for staying connected as you are able.

With much love,


Feb 6, 2015: Trip to Pittsburgh and Upcoming “POEM” Surgery

Kristina and I had a busy and eventful week.  I’m writing to give you a brief update.

We flew to Pittsburgh on Monday, February 2nd, and made it safe and sound despite a big storm in the Northeast that day.   On Tuesday morning, February 3rd, we had a very meaningful consultation with Dr. Hussein Tawbi, the director of the sarcoma program at the University of Pittsburgh’s Hillman Cancer Center.

Dr. Tawbi was wonderful.  He is an extremely bright, caring oncologist — and very knowledgable about and experienced in dealing with rare and challenging sarcomas like mine.

He had a lot to share. Of note, he carefully reviewed the results of a gene sequencing assay that was performed on my original tumor specimen about a year ago, which actually revealed three specific gene mutations.  Dr. Tawbi feels strongly that one the of the three mutations in particular is a potentially viable candidate for treatment with one of two new “targeted therapy” drugs. One of these drugs is FDA-approved (although for a different kind of cancer than I have), but could nonetheless potentially work for me.  The second drug is being studied in a clinical trial that is available in his program.  He asked me to return to see him in a month, after undergoing another series of MRI and CT scans.  Right now, I am very inclined to go.

Dr. Tawbi felt that — given how severely exhausted I am from my last cycles of chemotherapy — it would be reasonable for me to take this time as a break off treatment.

We returned home Tuesday evening, feeling very tired but glad that we had made the trip, and gratified to have Dr. Tawbi on our team.

Also of note, Dr. Tawbi recommended — as have several other of my doctors —  that I go ahead with the surgical procedure mentioned in my last blog post, to try and relieve the difficult swallowing/achalasia symptoms I’ve been struggling with for many weeks, before proceeding with any further systemic cancer treatment.  I’ve decided to go ahead with this procedure  — called a “POEM” procedure (which stands for “Per-Oral Endoscopic Myotomy”) — this coming Monday, Feb 9th.  This will be done by a terrific gastroenterologist at the University of Colorado, in Denver, Dr. Norio Fukami, who I saw for a consultation on January 22nd.

I admit that I am daunted about undergoing yet another surgery at this time, for a variety of reasons.  First, I still feel quite weak and exhausted from the last cycles of chemotherapy.  The procedure also requires general anesthesia, which I have found from significant personal experiences takes a toll on my system.  There are also risks involved — as with any surgical procedure.  I’m also not looking forward to a post-op recovery time that requires a liquid diet for a minimum of two before the surgery, and four days after the surgery — and it is unclear how long it will really take to fully heal from this and eat normally again.   Nonetheless, I am convinced that this procedure is the best option I have available right now.  And I feel certain it is important to try.  I want to keep doing all I can to keep moving forward, and being able to get adequate nutrition is essential.

The surgery will happen on Monday morning, in Denver, and I will be kept in the hospital overnight.  If all goes well, I’ll be discharged on Tuesday and return home to Boulder.

There is a lot more I could say about all that is going on — but these are the most pertinent details for now.  I wanted you to have a sense of the highlights.

Thanks as always for your love and support…