It’s been another very intense two weeks on the cancer journey.
I had followup MRI scans of the spine on Monday and Tuesday, Jan 26th and 27th, as planned. The scan results are somewhat complex and hard to interpret — which can happen in oncology more frequently than one might expect. On the positive side, most of the bone lesions are stable in size after the last two cycles of chemotherapy, and there are no new lesions noted. This was really encouraging. On the other hand, several of the existing lesions increased in size, and, unfortunately, the scans showed signs of recurrence of the worrisome problem involving the T3 vertebral body lesion that I’ve been following and treating for many months. It is now, once again, coming close to the spinal cord. This is scary and unsettling.
On Wednesday, Jan 28th, I reviewed the findings with my medical oncologist, Dr. John Fleagle. Given the complex findings — and the types and extent of treatments I’ve already received almost non-stop over the past 16 months — he agreed that the next steps forward are not clear.
Yesterday, Jan 29th — which was Kristina’s 35th birthday — we went to see a radiation oncologist in Denver whom I’ve seen before, Dr. Dennis Carter, to hear his thoughts and opinions about whether or not the T3 lesion needs to be radiated again, and if so, how urgently. He acknowledged that treating it now could be helpful, but felt that I have some time to make a final decision.
On Monday, Feb 2nd, Kristina and I are flying to Pittsburgh, PA, for a consultation on Feb 3rd with Dr. Hussein Tawbi, a medical oncologist who is the director of the sarcoma program at the University of Pittsburgh Hillman Cancer Center. He is also the principal investigator of a number of clinical trials that could potentially be meaningful options for me at this critical juncture. Hopefully, he will have other helpful insights and recommendations about how to proceed in this situation. I am eager to see how that visit goes, and what he recommends. We’ll be flying back home to Colorado on the evening of Feb 3rd.
In the midst of all this, I have unfortunately also been experiencing continued toxicity from the last cycle of Doxil (#4), that I received on Jan 8th. For some reason, this cycle really wore me out. I’ve been exhausted, and have had generalized stomach aches, nausea, and very low appetite. Usually by this time after a cycle of chemotherapy, I have recovered and am feeling generally well. But not this time. It has been very discouraging.
If all this weren’t enough, in these last number of weeks I’ve also continued to struggle with recurrent symptoms of difficulty swallowing solid food. This is caused by the rare achalasia syndrome that I was diagnosed with in 2011, at the time I was also diagnosed with sarcoma, and which I have mentioned briefly in previous blog posts. Over the past three years, I’ve been treated four different times with endoscopic procedure that includes dilating the lower esophageal sphincter with a balloon, and injecting botox into the sphincter muscle to allow it to open more easily. Initially, the treatment worked very well. But a year ago the symptoms recurred, and then again they recurred this past fall.
Last week, I saw a gastroenterologist at the University of Denver, who specializes in a relatively new endoscopic surgical procedure, called the “POEM” procedure (which stands for “peroral endoscopic myotomy”). The procedure has a high chance of relieving the symptoms, but there are risks and potential complications associated with it as well. It requires anesthesia, at least day in the hospital, and a recovery period of a week to ten days. He has recommended that I go through with the procedure, and I am strongly considering it.
So, that is a brief overview of the current landscape. It is an understatement to say that our plates have been very, very full. As always, Kristina and I are doing our best to sort through all these issues and challenges as thoughtfully and carefully as we can. For now, more chemo or further interventions of any kind are on hold — at least until we return from Pittsburgh. I feel that my body and soul need a period of rest, and some time to recover and heal. Kristina and I continue to move through all of this one day at a time, with as much surrender, wisdom, focused action and intention — and as much heart — as possible.
I will keep you posted as things continue to unfold.
Meanwhile, I want to thank you as always for your love, prayers, and good wishes. They continue to move and inspire me, and are a great source of comfort and encouragement. As always, I would so much like to be able to respond and be in touch directly with each of you, but with so many things swirling around right now, both inside and out, it is just not possible. I hope you understand.