Ellis Health Update - 170702

The last update was on 170613 following a 170606 office visit and after I had arranged a trip to Houston to consult with Dr Sugarbaker at the Mesothelioma Treatment Center at Baylor College of Medicine.

I underwent chemotherapy on 13 June (my birthday). Dr. Lindquist noted that it was my birthday and offered to shift the date. However, I told her that I would prefer to go ahead as scheduled.

The next day, 14 June, I felt good enough that I repeated and wrote an updated report for my 2.5-mile Neighborhood Walk. On 15 June, the second day after chemotherapy, still feeling good, I completed my 4.7-mile Big Block walk and wrote a report describing that walk.

The 16^th of June was the third day after chemotherapy. This is a day that is normally totally lost because I feel so bad. Day four is usually a little better and then I am back to normal (or as normal as it gets while undergoing chemo) on day five. The doctor had prescribed sleeping medication for the three-day period surrounding chemo, the period when I take steroids, and I had hoped that the ability to sleep those three nights would alleviate the post-chemotherapy effects for days three and four. Alas, that was not to be.

I felt much better on 18 June; this was to be expected as it was day five after a chemotherapy session. The temperature outside was well over 100 degrees F, too hot to walk outside, so I decided to do a few indoor laps at the Recreation Center. According to a posted sign 19 laps equals one mile and, barring a miscount, that is what I did.

The next day I again visited the recreation center, this time carrying my GPS so I wouldn't have to count laps; I walked 2.5 miles this day and repeated that routine for the next two days.

On 22 June I underwent a PET Scan at the Verde Valley Medical Center. The scan was ordered by Dr. Lindquist at AZ Oncology where I have been undergoing chemotherapy. However, it would also substitute for the same procedure required at Baylor the next week. I just had to take a CD of the results with me to Houston.

The next day was taken up with collecting medical records to take with me to Baylor. Packed and organized for the trip to Houston. Dr Lindquist's Assistant, Victoria, called to tell me that the results of yesterday's PET Scan were good.

We traveled to Phoenix and stayed overnight at the Holiday Inn Express on 24 June and then took an American Airlines flight to Houston (George Bush International Airport) on 25 June.

The 26^th of June was taken up with a series of tests at Baylor. These included the following: an ECHO (Echocardiogram), a Stress Test, an EKG (electrocardiogram), LABS (blood testing), a Chest MRI (Magnetic Resonance Imaging) and a PFT/6 Minute Walk (Pulmonary Function Test) and an Initial visit with clinic staff.

This was followed the next day by a group meeting. The purpose of this meeting was to introduce members of the treatment team. Among the individuals introduced were: Dr. Sugarbaker (Director, The Lung Institute), a Dietitian, a Social Worker, a Chaplain, a Patient Affairs Specialist and others. As explained, they are prepared to provide guidance on where to stay while undergoing treatment, how to navigate the scheduling system, what to eat in preparation for surgery and after surgery, transportation arrangements and, if all else fails, a chaplain to console the troubled soul.

After all the test results were available, including the PET Scan from VVMC, we met with Dr. Sugarbaker to discuss the findings and options. Dr. Sugarbaker tentatively scheduled me for Staging Treatment surgery or Surgical Staging* (surgical examination of the lymph nodes and intestinal area to determine whether the cancer has spread to those areas) on a specific date during the first part of July but also referred me to Dr. Diez for evaluation due to an anomaly noted during the stress test. I saw Dr. Diez that afternoon and was scheduled for a Cardiac Catheterization the next morning.

* Surgical Staging is described in a Mesothelomia Treatment Center handout as follows: "Three surgical sights may be explored as part of the staging of MPM (Malignant Pleural Mesothelomia). These are the thorax (chest), the anterior mediastinum (the space just anterior to the main airway) and the peritoneum (abdominal cavity). These spaces are explored using minimally invasive surgical techniques."

I underwent Cardiac Catheterization on 29 June and was cleared for the already-scheduled Staging Treatment surgery. Dr. Diez was very good, explaining the procedure very clearly in advance with drawings and in plain English. The other staff members were also friendly and efficient. However, the scheduling department at that hospital (CHI St Luke's) could use some attention. I arrived before 0715 and was rapidly checked in; I then remained in pre-op until after 1200. A 93-year-old gentleman, awaiting an operation to replace a heart valve, already in pre-op when I was wheeled in, was still waiting when I was wheeled out for my procedure.

On the 30^th of June Rosemary and Julia checked out accommodations for future trips and decided that we should continue to use the Holiday Inn where we had stayed for this visit. This visit had worked out well, they provide shuttle service to and from the clinic as well as to other nearby locations, and they agreed to give us an additional discount if we returned for the major surgery, tentatively scheduled for a few weeks after the Staging Treatment surgery.

We traveled back home on 1 July, leaving Houston from nearby Hobby Airport at 0850 (a Southwest nonstop flight to Phoenix) and arrived back home before 1400. We switched to Southwest because they fly out of Hobby Airport which is closer to the medical center. They have several direct daily flights between Houston and Phoenix. This is important because, assuming everything goes well, I will need to make several followup visits to the clinic after the major surgery.

I am now scheduled to return to the clinic in early July for the Staging Treatment surgery mentioned above. This will tentatively be followed by major surgery a few weeks later to remove all of the cancer that, in Baylor Clinic terminology, "is visible to the naked eye." The plan is to then follow up with "chemotherapy and/or radiation therapy to kill any remaining cells."

This approach sometimes involves removal of a lung; however, Dr. Sugarbaker thinks, based on what he has seen so far, that he will be able to avoid that. If not, living with one lung is better than the alternative and I did meet a very lively and active patient who had one lung removed as part of his treatment. He was back at the clinic for a follow up visit.