Ellis Health Update - 170728

On 20 July, I visited Doctor Brenda Howland, my primary physician, as recommended by Baylor clinic for a followup to the “staging” surgery performed there on 10 July. This was because of the bleeding caused by insertion of a urinary catheter during the surgery. Meanwhile the bleeding has long since stopped and I am feeling no ill effects from the catheterization. She suggested that I remind them of the problem when I return for the next round of surgery so that they can perhaps use a smaller tube.

The next day, Friday, 21 July 2017, I saw Doctor Lindquist at the Arizona Oncology Center in Sedona. She had a fresh blood test drawn and, after checking the results, called for another B12 shot and a Zoledronic acid Q28D infusion (a bone strengthener or, as one doctor termed it, “bone cement”). Immediately on returning home, I went online and attached the blood test results along with the report of the shot and infusion to my file at the Baylor Clinic. They responded shortly saying that Doctor Sugarbaker had reviewed my biopsy results (from the 10 July procedures) and that he “recommends to proceed with scheduling the bigger surgery - pleurectomy and possible extrapleural pneumonectomy.”

Basically, as I understand the terms, that means they will first try to address the problem by removing the diseased lining of my lung along with any other tumors in my chest. This is called a pleurectomy.

If it turns out that a pleurectomy will not adequately address the issue, they will then proceed to remove my diseased lung, part of my pericardium, (membrane covering the heart), part of my diaphragm (muscle between the lungs and the abdomen), and part of my parietal pleura (membrane lining the chest). This is called an extrapleural pneumonectomy. Diana sent me a narrated step-by-step video demonstration of this procedure. Watch it if you have the guts:

http://www.annalscts.com/article/view/1067/1595.

Doctor Sugarbaker said that, based on what he had seen so far, he thought he would be able to avoid removing the lung.

On 24 July I received a date for the “bigger” surgery. I am to be in Houston three days before the date of the surgery for a Nuclear Lung Scan, an Ultrasound of my lower extremities and an office visit with Doctor Sugarbaker. I don't know how long I will be in hospital following the surgery, but I am told that I can expect to spend about a week in ICU. We are tentatively planning to be in Houston for a full 30 days.

Part of the prescribed pre-surgery regimen is a 20 minute walk,”preferably outdoors, each day. I am satisfying this requirement with a short daily walk around the neighborhood; yesterday I did one mile, today, 24 July, I walked about 1.4 miles. By August 26 I was up to 2.5 miles. I had walked 2.5 miles at the recreation center a few days ago, but that was in an air-conditioned space. Outdoor walks are much more difficult in this hot, muggy (for Arizona at least) weather.

Rosemary snapped a photograph of me (right) all decked out for my daily walk. Note the GPS (in case I decide to deviate from my normal route) in my pocket and the dog whistle (for retaliation against the occasional dog who insists on raising the alarm while I am walking past of the street) strung around my neck. Most of the dogs on my normal walk have long since learned about the whistle and now let me pass in peace.

This will likely be my last health update posting until I am sufficiently recovered from surgery to care about such things: expect to hear from me again from the other side of the surgical gulf sometime in late August.

TREKABOUT WALKS - August 2017

Walks are graded on a 1-4 scale (with 4 being the most difficult)

Meet Every Tuesday - hikes starting at 7:00AM (subject to change)

HIKING SHOES RECOMMENDED/CARRY WATER/DOGS MUST BE ON LEASH

To join TrekAbout Walking Club, please email at jen.mabery@yavapai.us

Or call: 928-634-6877.

Get up and get moving! And it’s free 

Tuesday, August 1st

“Airport Mesa Loop Trail” – What a beautiful 3.5 mile loop trail! There are views all the way around the loop. There is a short slick rock ledge at the start of the trail. NOTE: Red Rock Pass

Level 2.5-3

Directions: From Cottonwood, Enter Sedona and turn right when get to Airport Rd Traffic light. About half way up road (.2 tenths of a mile) pull out parking on the left.

Tuesday, August 8th

“Mingus Mountain” (Don’t know the real name) – I would say about 3-4 miles out and back. Go through some pines along the way to a very nice outlook view. Nothing too strenuous.

Level 2.5

Directions: From Cottonwood, Head up to Jerome, continue 4.2 miles beyond Jerome. You will then see a large pull out on the right that also has a big brown Prescott National Forest sign.

Tuesday, August 15th

“Baldwin Trail” –

Another great loop hike about 3 miles long, this hike provides wonderful views of Cathedral Rock. It will take us down towards red rock crossing to enjoy some sounds of the creek.

Level 2.5

Directions: From Cottonwood: Go through Cornville to beaver head flat road to village of Oak creek. Then turn left at the Verde Valley School Rd round about. Follow all the way out till road turns to dirt, then about a mile in look for trail head lot on the left.

Tuesday, August 22

“Wilson Canyon Trail” -The going is very easy and there'is quite a bit of shade. This route goes into a box canyon alongside a wooded stream, then, if you choose, a scramble up to a big viewpoint. P.S. we can also combine a nice water feature after this main hike that goes underneath the bridge! Splash around a bit.

Level 2.0-2.5

Directions: From Cottonwood: Drive to Sedona, stay on 89A like you are going up Oak Creek Canyon. Park in the Midgely Bridge Parking Area.

Tuesday, August 29^th

“Arizona Cypress” – 3.0 mile loop trail. I admit, I haven’t done this one yet but it looks great on the map. Intersects with Girdner, snake, and anaconda trails.

I’ll call it a level 3 because I’m not sure (Adventure Time!)

Directions: From Cottonwood: Head to Sedona via 89A, Turn left on Dry Creek Road. Just before the first “T” there is a left hand dirt road turn (right before the little bridge) left. Follow to trail head.

Remember: Choose the best hike for you! (Call 928-301-6143 or email: jen.mabery@yavapai.us with any questions), Carry plenty of water, Bring a snack, use sun protection, consider walking stick(s), leave what you find, and most importantly...HAVE A GOOD TIME!

Hike to the B-24 Crash Site on Humphreys

It was 28 September 2013, fall had arrived, and we were beginning to feel a distinct morning chill in the Verde Valley. A visit to the B-24 crash site on the western slope of Mount Humphreys was on our to-do list and now, while the weather was still moderate in the high country, was the time for it. None of us wanted to hike in snow or be exposed to the coming winter winds that could be expected on the relatively bare slope of Mount Humphreys at the tree line.

Seven of us left from Cottonwood at 0700, picked up two additional hikers from Sedona at the Hwy 179/I-17 interchange and drove directly to Snowbowl, where we parked in the lower lot. Humphreys Trail begins there and we would follow it for 2.9 miles (my GPS) before turning off to follow one of many very indistinct trails for another half-mile across the rock fields to the crash site. The following photograph was taken from the trailhead.

Left to right: Jerry Helfrich, Lila Wright, the author, Frank Lombardo, George 

Everman, Bill Woolard, Kwi Johnson and Connie Woolard 

– photograph by Name Withheld

The trail runs across an open meadow for a little over a quarter of a mile, passing under the Snowbowl ski lift (photograph below) to enter an aspen forest.

The start of Humphreys Trail, looking from the trailhead to the aspen forest

After entering the forest, the trail soon starts to ascend, at first rather gently, but then becoming steeper and rockier. About a mile from the trailhead, at a sharp turn to the left it enters the Kachina wilderness Area. This is the second of seven switchbacks encountered on the Humphreys Trail between the trailhead and the turnoff to the crash site. The turnoff is actually located exactly at the seventh of these. But that was still 1.9 miles away.

By the time we entered the Kachina wilderness, the aspens had largely given way to conifers, which predominated for the remainder of the hike. Previously we had found a wide variety of mushrooms along this trail; none were visible now. Flowers were also sparse, with only a single scraggly example (right) along the trail.

We had been moderately concerned about ice and snow and we did find some shaded stretches of trail where footing was pretty precarious. But we managed to avoid any major falls and eventually found ourselves approaching the turnoff to the crash site. It turned out to be relatively easy to spot, located precisely at a sharp bend to the right. One just steps across the log located to the left of the trail onto a much fainter trail, starting between two close set trees, leading north along the mountain slope. Note the arrow pointing out the trail in the below photograph.

Turnoff to the B-24 Crash Site marked by an arrow

This relatively short trail (I should say trails because there are a variety of them all leading to the same site) is rough in places, leading through short stretches of wooded area, interspersed by rough climbs over rock fields. We had turned off Humphreys Trail at an elevation of 11,041 feet according to my GPS and climbed about another 250 feet to the crash site itself. Almost all of the climbing seemed to be as we crossed the rock fields. We stopped for lunch just after turning off the trail. In the upper right quadrant of the below photograph, a lone hiker can be seen walking on Humphreys Trail. The bright red object seen bottom right is a hikers backpack.

Skyliner hikers eating lunch (bottom) and lone hiker walking on Humphreys 

Trail (upper right quadrant)

It took us some time to make our way over the rock fields, as we traveled slowly and carefully; we also stopped frequently to rest. As a matter of fact, we probably spent more time eating lunch, resting and just admiring the unobstructed views from high on the slope of Mount Humpreys during the short trip from Humphreys Trail to the crash site than we did hiking and climbing.

After a final sharp climb over the rocky slope we came to the edge of the crash debris field. The first major bit of wreckage we saw was a bucket seat we think was designed to protect a machine gunner from bullets and shrapnel. Lila and Kwi are shown below posing in the seat.

Lila in machine gunner's seat

Kwi in machine gunner's seat

The plane that crashed here at 0330 on 15 September 1944 was a B-24J Liberator. It was flying on a training mission from Bakersfield, CA to Albuquerque, NM with a crew of eight. The plane's specifications and serial number are listed below:

Designation: B-24J

Serial Number: 50890

Wingspan: 110 feet

Height: 18 feet

Length: 67 feet, 7 5/8 inches

Weight (empty): 36,500 lbs

Weight (fully loaded): 65,000 lbs

Engines: Four, 1200 hp, Pratt and Whitney, R-1830-65

Performance: Max Speed: 290 mph, Service Ceiling: 28,000 feet, Range: 3,000 miles

Armament: Ten 50 caliber machine guns

Crew: 10.

Debris from the crash is scattered over an area of several acres, some in wooded areas and some on the rock field. As a result any waypoint for the crash site is somewhat arbitrary. I used one from a previous visitor to the site and one found on Google Earth. Either of the two would have taken me to the crash site, just different spots in the debris field.

Continuing across the rock field from where we found the machine gunner's seat, we came upon widely-scattered bits of the plane, still lying where they were flung by the impact.

Aileron or piece of a wing flap

Large section of a wing

Widely scattered wreckage – showing only a small section of the debris field

Standing upright like an ever-alert sentinel, was a part of the landing gear (left).

We gathered back at the spot we had first entered the debris field and paused for a moment of silence in honor of our eight fallen comrades who gave their lives at this spot in defense of our country. They included a pilot instructor along with four student pilots, two engineers and a radioman Their names were Warren Crowther, Ray Shipley, Clyce McClevey, Charles McDonald, Patrick Pertuset, James Hartzog, John Franke and Hugh Brown.¹

After a last look across the crash site we headed back down the trail.

A final look across the crash site before heading back

When we reached Humphreys Trail we were relieved to see that most of the ice we had encountered on the way up had now melted. The worst patches were now either completely melted away or had at least been reduced to a soft slush (right).

When we reached the tree line at the edge of the aspen forest, just a short distance from the end of our hike, we encountered a group of young men from Scottsdale, AZ who were returning from a trip to Humphreys Peak. I walked ahead with one of the group as we crossed the meadow to the trailhead and we discussed their trip to the peak. He told me that at one point in the hike they thought one of their group wouldn't be able to complete the hike on his own, so they stopped to discuss their options. How would they transport him back? They finally decided that they would cut a sturdy pole and tie him to it, hand and foot, like a bagged deer. The rest of the group would then take turns on the ends of the pole to carry him out. Fortunately, by the time they had perfected their plan, he was found to have made a miraculous recovery and managed to complete the hike on his own. They would never know for sure whether his rapid recovery was due to the thought of being carted out like a bagged deer. Of course, considering that the elevation difference between Scottsdale and Humphreys Peak is over 10,000 feet, he probably just had a touch of altitude sickness and needed a few minutes to recover.

My GPS track shows that we hiked for 4 hours and 14 minutes and stopped along the way for 3 hours and 37 minutes, for a total time of 7 hours and 51 minutes. The total round trip hike distance was recorded as 6.9 miles with an elevation gain of 2012 feet and a highest elevation of 11,299 feet. Our GPS track is shown on the included map (below).

1Arizona Daily Sun, 4 September 2004

Ellis Health Update - 170719

On 3 July I Walked 2.5 miles at the recreation center and did 5 minutes at level 7 on a stationary bike. I then rescheduled Arizona Oncology appointments, canceling a scheduled chemotherapy treatment (now superseded by treatment at the Mesothelioma Treatment Center at Baylor).

The remainder of that day was spent on the telephone with the VA. I have submitted a claim with the VA and they wanted me to make an appointment to see a doctor at the VA Hospital in Prescott, AZ. The claim had been referred to Prescott from the Phoenix VA Hospital. Prescott wanted me to see their doctor on 8 August, a time when I will most likely still be in the hospital at Baylor recovering from surgery. I asked for an alternate date but was told that they were already booked up until 8 August and could not schedule more than 30 days in advance. I thought that was rather odd, as 8 August was already more than 30 days from the current date. I told them that was a catch 22 and asked them to send my record back to Phoenix. I then talked to a representative at Phoenix who agreed to put my file on hold until my current round of surgery is resolved.

As an aside, the way it was explained to me, the only reason I need to see a doctor at the VA is to do a breathing test, a test already performed during my present course of treatment. No wonder the VA is so far behind.

On the 4^th, I again visited the recreation center where I walked 2.5 miles and did 10 minutes at level 7 on a stationary bike.

I met with our attorney on the 5^th and then spent the next two days giving a legal deposition. That was the third and fourth day of a 4-day deposition.

On Saturday, 8 July, we traveled to Phoenix and then continued on to Houston on Sunday for surgery scheduled for the next day.

On Monday, 10 July, I underwent what is called Surgical Staging (surgical examination of the lymph nodes and intestinal area to determine whether the cancer has spread to those areas). After the operation, I was informed that there were no visible signs that the cancer had spread to these areas. This will be confirmed by biopsies taken during the procedure, results of which will be available next Monday or Tuesday. However, I was anesthetized for the procedure and a catheter was installed. The installation was very difficult due to an enlarged prostate and I am told it took three tries to insert it properly. This resulted in some damage that caused leaking (bleeding) around the catheter. As a result I was held for two days in the hospital before it was decided to remove the catheter and send me back home with a referral to my local doctor for followup.

We did make our already-scheduled flight back to Phoenix on Thursday, 13 July, but I was traveling in a wheelchair and not allowed to lift more than 10 pounds, actually I think they might have specified no more than 2 pounds for the first couple of days. Rosemary pushed me but I could tell that it was quite difficult by the way she grunted. If we return from the next surgery under the same conditions, I will insist that she wait for an attendant to push the wheelchair. In addition to being prohibited from lifting more than 10 pounds, I am currently unable to drive because of the medications I am taking.

I felt pretty drab for the next few days but finally managed a short walk in the neighborhood accompanied by Rosemary on the 17^th and a one-mile walk by myself the next day.

Today, Wednesday, 19 July, I was notified that the “cervical mediastinoscopy and lymph node biopsies”, from the 10 July surgery were negative. Dr Sugarbaker still has to review my file and set a date for the major surgery, described as surgery to remove all cancerous cells that are visible to the naked eye. I am told that I will hear from the doctor no later than next Monday.

I celebrated the negative biopsy news by walking 2.7 miles at the recreation center. They have a short track; it takes 19 laps to do one mile, but you've gotta love the air-conditioning on these 100+ degree days.

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.