Ellis Health Update - 170613

Background

I am undergoing treatment for Stage 4 Mesothelioma Lung Cancer. The problem started with chest pains on 2 January 2017 after I returned from my workout at the gym. A trip to the emergency room resulted in a CT (computed tomography) scan that revealed a mass in my right lung. A later biopsy indicated it was mesothelioma; a sample was sent to the Mayo Clinic for a second opinion; Mayo concurred in that diagnosis and I was sent for a PET (positron emission tomography) scan at the Verde Valley Medical Center clinic in Sedona, the nearest facility with a PET machine. Following the PET scan I was referred to the Arizona Oncology Center Sedona facility in the same building. I saw Dr Anthony at the oncology center who discussed treatment options and recommended chemotherapy consisting of the following two drugs: Pemetrexed and Carboplatin, treatment which I am now undergoing.

Previous posts touch on this subject are shown at:

https://ellisfprice.blogspot.com/search?q=neighborhood+walk

and

https://ellisfprice.blogspot.com/2017/05/ellis-health-update-170512.html

and

https://ellisfprice.blogspot.com/2017/05/ellis-health-update-170522.html

Current Status

On 6 June we went to Sedona and saw Dr Lindquist (Dr Anthony has accepted a research position at an institute in California) for a scheduled chemotherapy visit; however my platelet count was too low and she rescheduled it for next Tuesday, 13 June (my 85^th birthday; she noted that and offered another date but I declined because I like the Tuesday schedule). She also changed me from a three-week schedule to a 4-week schedule and scheduled a PET Scan for 22 June. Dr Lindquist prescribed temazepam to help me sleep while taking dexamethasone (steroid) tablets for the three-day period surrounding each chemo treatment. It seems to work as I slept for almost 8 hours the 0n 12 June, the night before today's chemotherapy session. I usually have a couple of down days following chemo. Perhaps some of that has been caused by sleeplessness.

Additionally, she referred me “to Dr David Sugarbaker at Baylor College of Medicine for an opinion on surgery for mesothelioma.” I fly to Houston on 25 June and expect to return home on 1 July. At my advanced age, I am an unlikely candidate for surgery, but if there is a chance that surgery could be performed, possibly resulting in remission, I am willing to consider it. After all, the chemo treatment I am now undergoing is only intended to keep the cancer under control, possibly prolonging my life for another couple of years and I suspect that my quality of life would deteriorate significantly over that time.

Meanwhile I am still holding up quite well. I did my usual 2.5-mile walk yesterday and would have aimed for the 4.7 mile “big block” walk today had not the chemo treatment interfered. I will see how I feel tomorrow and perhaps go for a walk after Julia leaves for the airport. She has been a very welcome and most helpful visitor for the past ten days.

Both she and Diana will meet us in Houston for the evaluation with Dr Sugarbaker's team. Hopefully, Julia's husband, Rick, will also be able to come. I have not seen him for some time.

My next update will likely be sometime in early July

Ellis Health Update - 170522

Background

I am undergoing treatment for Stage 4 Mesothelomia Lung Cancer. The problem started with chest pains on 2 January 2017 after I returned from my workout at the gym. A trip to the emergency room resulted in a CT (computed tomography) scan that revealed a mass in my right lung. A later biopsy indicated it was mesothelioma; a sample was sent to the Mayo Clinic for a second opinion; Mayo concurred in that diagnosis and I was sent for a PET (positron emission tomography) scan at the Verde Valley Medical Center clinic in Sedona, the nearest facility with a PET machine. Following the PET scan I was referred to the Arizona Oncology Center Sedona facility in the same building. I saw Dr Anthony at the oncology center who discussed treatment options and recommended chemotherapy consisting of the following two drugs: Pemetrexed and Carboplatin, treatment I am now undergoing.

Two previous posts touch on this subject they are shown at:

https://ellisfprice.blogspot.com/search?q=neighborhood+walk

and

https://ellisfprice.blogspot.com/2017/05/ellis-health-update-170512.html

Current Status

I underwent my fifth chemotherapy session on 17 May 2017. The doctor was happy with the associated lab results.

The laboratory results are meaningless to me. However, the most pertinent in my case (based on the doctor's emphasis) seems to be my Hemoglobin level, so I looked that up online at the Mayo Clinic website. Low hemoglobin results in anemia, a condition which is somewhat normal for me.

The specific parts of the test he seems most interested in are the HGB (Hemoglobin, the oxygen-carrying component within the red blood cells) and the HCT (volume of red blood cells in a specific volume of blood).

The lower HGB level for continuing the treatment I am undergoing is 7 g/dl.

On the 21 April test, my HGB reading was 9.9 g/dl, so I increased my intake of blackstrap molasses (for iron) and Potato chips (for sodium) and the 15 May test results showed an HGB level of 10.4 g/dl.

With the chemotherapy port in place (installed at the time of the last treatment), the treatment on 17 May went smoothly.

I have been having a problem with my eyes watering recently. The doctor called it “easy lacrimation” and suggested an antihistamine such as Benadryl. He said that should also help me to sleep during the three-day period surrounding chemotherapy treatments during which I take a steroid (Dexamethasone).

I normally have a couple of down days following chemo sessions, days on which I really don't have any pain, but just feel listless. These listless days are usually the second and third after treatment. This time was no exception. The first day after treatment, I went for a 2.5-mile walk and still felt good. The second day, still feeling good in the morning, I walked 4.7 miles and that may have been a bit too much: because by early afternoon I was really dragging. My listlessness continued through another day.

This morning, 22 May, the doctor's office called to tell me to start taking two iron tablets each day. Hopefully that will help with the anemia. Later in the morning, I got out and walked about a mile before spending most of the rest of the day watching pre-recorded TV shows with daughter Diana who is visiting for the week. I think that I am now ready for some more substantial activity and Diana and I have a 2.5-mile walk scheduled for tomorrow morning.

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.

Ellis Health Update - 201020

Finding that the 0ne-mile walk was wearing me out and leaving me listless the next day, I did just half a mile on 13 October. I also found that using the yucca pole for support was causing some residual pain in my right. On the 14^th I walked eight-tenths of a mile and carried my pole mostly in my left hand.

Apparently prompted by the description of my first post-operation walk in my last update, daughter Julia sent me some pictures she took of the event. The photograph shown here (right) was taken on 23 August, just two days after surgery.

The rat's nest of tubing seen at lower left are the drain tubes from my chest to the four receptacles now mounted just out of sight on the walker. In the photograph, I have located the brakes and am now ready to go. With the monstrous walking machine, the rolling stalk that carried my feeding and medication tubes and measuring instruments and three attendants who accompanied us we pretty much took up the entire hallway.

But back to the present. On the 15^th, 16^th and 17^th I walked a mile each day, although I must admit that I was very tired at the end of the walks. On the 18^th I stopped taking Gabapentin, a pill that is supposed to help with nerve pain. It comes with the warning that it may cause dizziness and I had been feeling pretty dizzy. In any case, I really don't know how to distinguish nerve pain from other sorts of pain and the present regimen of one Tramadol at night followed by three Acetaminophen (taken six hours apart) works well to control the pain.

Most of the pain I feel is concentrated in my right chest around the rib cage and just below my right shoulder blade. It comes after I sleep in a position that puts a strain on that area or forget and use my walking pole in my right hand for a prolonged period. I estimate the level of pain using a scale (below) provided by a nurse at the Baylor Clinic. Usually I am pain free or the level does not exceed level 2; occasionally it reaches level three but never for long.

Wong-Baker Pain Scale

I didn't walk on the 18^th because I felt too dizzy and didn't want to chance falling in front of a car.

On the 19^th, I was preparing for the normal one-mile walk when I found that Rosemary was leaving for a book sale at the Clarkdale Library. She asked that I take an easier walk as she would not be at home to come to the rescue should I fall. I could hardly argue as the main reason for the trip to the book sale was to buy books for me to read during the forthcoming trip to Houston. However, the “easier” walk I chose actually turned out to be 1.4 miles long when I later measured it.

I am still watching the slow march of fall colors as they spread through the neighborhood. The predominant color is the bright yellow of turning cottonwood foliage. There are only a few houses that have fall flowers planted. The most striking of these are a house along Brook Hollow with an assortment a Chrysanthemums, our own dwelling with the still-blooming yellow and red Lantana beds and a gorgeous Pyracantha (left) growing at the intersection of Brook Hollow and Arroya Vista Drive.

We are off to Houston for my follow-up appointment with Doctor Sugarbaker next week. Depending on what he finds we hope to return home by Friday.

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.

Ellis Health Update - 171218

Saturday, 2 December 2017. I finished a day-and-a-half legal deposition this morning and then managed to get in a very slow walk this afternoon. The walk left me completely exhausted and I slept for an hour and a half afterward. This was the first walk I have managed for several days. Thursday was taken up by a visit to the dentist and an attorney's meeting, and Friday and Saturday were consumed by the deposition. I did finally resume walking on Sunday.

It is now Monday, 18 December and we are preparing for the kids arrival for a Christmas visit later this week. I had a few bad days recently but am now back to my regular one-mile walk most days. The weather has been cooperating and it has been sunny most of the time. We haven't actually had any rain for several months now, but sometimes it is cloudy and rather dreary. I do like the sun.

For my regular mile-long walks, I choose between two separate routes. One is a straightforward route to the end of a street, returning the same way. The other utilizes several different streets in a sort of loop and is a bit more interesting. Each route has a resting spot at about the mid-point of the walk, a very welcome fixture. The out-and-back walk resting spot is a conveniently-parked trailer (right) that I have seen moved only once in all the months I have walked this way; it is usually bathed by the sun when I arrive and is thus a nice place to stop on a winter day. 

The loop walk resting spot is an upended rock (left) in the edge of Bill the Boatman's yard. (the owner's name is Bill and I call him the Boatman because he has several boats parked on his property and does repairs for others).

Ellis Health Update 180220

[Written by his wife Rosemary and daughter Julia, then radically edited by his other daughter Diana.]

Ellis' pain had subsided during the fall after the summer surgery in Houston, but it began to return at the end of the year. The kids came for Christmas, so that took his mind off the pain considerably.

Diana, Julia and Rick (Julia's husband and Ellis' Marine hero) were all here, and Julia and Rick surprised Ellis with a new television for his office, which made him very happy. Diana got to accompany Ellis on one of his regular neighborhood walks. She borrowed his extra cowboy hat and walking stick so they would look alike.

On 9 January 2018, Ellis returned to Houston for a checkup with Dr. David Sugarbaker. A CT scan of the chest and a PT scan were performed. The tests revealed a tumor “the size of a billiard ball”. Ellis felt discouraged after we got the results. When we returned to Cottonwood, we anxiously awaited a visit with the oncologist, Dr. Deborah Lindquist, to try a new treatment: Opdivo (nivolumab).

The Opdivo treatment had many side effects including a high white blood cell count, low electrolytes, and a persistent high fever. On Sunday, 4 February 2018, paramedics took him by ambulance to Verde Valley Medical Center. On Monday, he aspirated fluid into his lungs and was rushed to ICU where he was put on oxygen, antibiotics and steroids. Then he had several episodes of A-fib, so heart medications were added. On Saturday night, 10 February 2018, he received two units of blood.

Diana came to Arizona on Monday, 5 February 2018 and Julia arrived the following Sunday. Once both of his kids were here, Ellis declared that he was ready to go. We shared favorite memories. The doctor didn't agree that it was time for him to go and talked him out of it. So we spent another week of testing, poking and prodding.

(Note from Diana: During Dad's illness, we learned that Julie should have been a geriatric nurse. She anticipated his needs and seemed to do everything at one time. He was so relieved when she arrived. I did my best but mostly just told him he was cute then pressed the call button or said “Julie!”. Julie also seemed to know what all the machines and numbers and beeps were about.)

It was finally determined that the infection was in his port that was placed for chemo. The nurses could no longer get access to his veins, so Ellis decided it was time to give up and go home so he could get some rest. He's spending time with the kids and is being cared for by Rosemary and Maggie's Hospice.

Ellis Health Update - 171127

I Did a one-mile walk on 18 Nov, about 0.75 plus a visit with Angel on 19 Nov and a mile again on 20 Nov.

I am still getting by almost pain free with three Tylenols per day, bedtime, around mid-morning (when needed) and about 1600. I usually only feel pain when I put significant pressure on my rib cage. I have no pain when I breath deeply and I can raise my arms above my head without any significant amount of pain.

On the 21^st, I worked on the truck, trying to charge the battery with a new charger until I tired myself out and did not walk at all. The next day I walked in the morning and then worked on the truck with George Everman in the afternoon, cleaning a corroded terminal and attempting to jump-start it. We finally called AARP Motoring for assistance. They showed up about 40 minutes later, started the truck and told us part of the problem was a loose gear shift mechanism that interrupted the circuit. While the truck was running we delivered it to the dealer and left it to be serviced next week.

It is now Monday, the 27^th of November and I have walked a mile each day since the 21^st, varying my route part of the time to climb a slightly more difficult hill. The walks leave me exhausted and I always take a long nap afterward. Oh, for the days only last year when I could hike 10 to 15 miles and then rough out my report before retiring.

At least the days have been sunny for my walks and I have paused along the way to enjoy the fall colors, or at least what passes for fall colors in our neighborhood. The below photograph shows local color at about its best.

 Fall colors in the neighborhood

At times the scrub oaks and the maples, nestled in the folds of Mingus Mountain, shown in the background of the above photograph, display some delightful colors. The photograph shown below, taken from the top of Mingus during an October 2013 hike, is an example.

Taken while hiking South Mingus Tadpole Loop (9 miles;2493 foot ascent)

Shortly after today's post-walk nap the repair shop called to tell me that my truck would be ready tomorrow. They had to replace the battery and do some work on the brakes. Since I am still not allowed to drive, they will deliver the truck when it is ready.

Ellis Health Update - 171005

I kept an appointment with Dr Howland (my primary physician) on 28 September. The appointment was made for me by the Baylor Clinic. The purpose was to insure that I was seen by a medical professional soon after flying home to Arizona and to coordinate care. My favorite walker is too heavy for Rosemary to load into the trunk of her car, so I took the lightweight aluminum walker that she had used when she had knee surgery. My walker has wheels while the lightweight one does not and thus must be lifted for each step. I find that “lift and move the walker forward and step to it” very, very awkward. After a few steps I wind up just lifting the walker and carrying it clear of the floor. That way it is readily available in case I need it and walking is unencumbered. That is the way I left the doctor's waiting room when called me to the examining room. I noted that the nurse was doing her best to suppress a laugh and couldn't imagine what that was about. As it turned out she thought it hilarious that I was striding down the hall to the examining room carrying a walker that never touched the floor.

After the visit to Dr Howland I did my 0.5-mile stroll with the wheeled walker (left). But that night I had trouble sleeping and was dizzy the next day. This lack of sufficient sleep at night and dizziness during the day continued for a couple of days. I even resorted to using the walker again around the house for a day. However, I did get a good nights sleep last night and feel better today, 1 October 2017. In fact I did a 0.04-mile walk at noon. I changed the route a bit because I was not sure that I was ready to resume the half-mile marathon yet. However, as about half of the new route was uphill, it would actually have been easier to just do the standard half-mile walk. By the 2^nd of October, although still a bit dizzy, I felt well enough for a trip to the barbershop. The next day I again did the 0.5-mile walk.

I saw Dr Lindquist, the local Oncologist, again on 4 October. This was a visit recommended by Baylor Clinic for the purpose of coordinating treatment. Dr Lindquist prescribed another B12 injection and another infusion of Zometa, the bone-building medication (called bone cement by one doctor) I have been receiving. periodically since the start of chemotherapy.

My next scheduled appointment is with Dr Sugarbaker in Houston on 24 October.

Ellis Health Update - 171116

It is Tuesday, 14 November and I am beginning to think I was too sanguine about the speed of recovery from surgery. I basically stopped taking my pain medications on a regular basis about three weeks ago and for several days I did just fine. However, I am now having trouble sleeping at night. Although I have no significant pain while sitting still, my right rib cage is very tender and it is quite painful when I turn the wrong way in bed, I cannot find a comfortable sleeping position and have slept little for the last several nights. I haven't been for a walk since last Saturday and don't feel up to doing one today.

It is now Thursday 16 November and I am feeling better. I restarted taking Gabapentin for nerve pain and, for the last two nights, Rosemary has rubbed my back and chest with Aspercreme at bedtime. I am also taking a Tylenol before going to bed. I saw Doctor Howland today and she said that I am still recovering nicely. I don't know whether it was because of the changes in medication or the encouraging words from the doctor, but I am now feeling much better; I even went for a one-mile walk this afternoon.

Ellis Health Update – 171012

After my Wednesday, 4 October visit with Dr Lindquist, we stopped to eat at the Black Bear Restaurant on the way home. The trip wore me out and I barely managed to keep my eyes open until 2100, my now normal bedtime. I still felt very tired the next day and took two long naps, one in the morning and one in the afternoon. However, on Friday I was well-enough recovered to resume my half-mile stroll around the neighborhood.

Because there is still some scab on a small part of my surgical incision, I have not yet been cleared to soak in the bathtub, a luxury that is especially alluring when forbidden. I am making do by having Rosemary wash my back gently with a soapy washcloth. The rest I can handle myself, using the same washcloth. Recently, while undergoing this routine, Rosemary snapped a photograph of my surgical scar (right). The three brown spots near the upper end of the scar are globs of adhesive which are supposed to wear off naturally. More adhesive can be seen at the lower end of the scar, specifically a brown line at the very end of the scar and running perpendicularly to it. The short scar located just below the bottom end of the major incision is where the four separate drain tubes inserted into my chest exited.

Each of the four drain tubes led to a separate container which had to be loaded onto a walker when an attendant took me for a walk around the corridor. Of course these four tubes were in addition to the normal feeding and medication tubes and measuring instruments associated with any major surgery. These were attached to my body and mounted on a rolling stalk. The first walk I did while still in the ICU included me pushing a walker on which the chest-drain containers were mounted, a physical therapist holding my arm in case I stumbled, a trainee pushing the rolling stalk and a second trainee going ahead to clear the way. We were quite a sight I am sure.

But that is reminiscing in the past. I did my now-normal half-mile stroll with the rolling walker on 8 October and then the next day, today, left the training wheels at home in favor of my trusty yucca-pole stick (left). Walking without having to push the walker along was a lot easier and, upon measuring my track when I returned home, I found that I had walked a full mile.

After today's walk I felt better than I have any day since surgery. Also, I am now feeling better about the follow-up visit to Houston. We plan to leave home around 1000 on the 23^rd and arrive at our hotel in Houston at about 2145. It will feel good to fly without having to be pushed through the airport in a wheelchair.

On the afternoon of my one-mile yucca-pole walk I was very tired and slept for almost three hours. As a result I didn't sleep quite as well as normal that night and didn't feel like another mile-long walk the next day. I did, however, manage to do a half-mile, again without the training wheels. I was still very weak the next day and didn't walk at all except around the house and to eat lunch at a local restaurant. However, by the following day, 12 October, I felt up to another one-mile hike, although I must admit to taking a short break along the way.

I am beginning to see some fall color now, just a few small, scattered cottonwoods that have turned yellow and, strangely, one large cottonwood that is showing scattered clumps of yellow leaves. We have not had a frost yet and the yellow leaves seem to be associated with particular branches. Perhaps those branches have been infested by some insect.

I have corresponded with the Baylor Clinic concerning my upcoming followup visit asking them to make that visit as short as possible because of Rosemary's asthma problem. The high humidity in the Houston area is particularly difficult for her. So far, the only tests scheduled are routine blood tests and an x-ray planned to immediately precede a visit with Doctor Sugarbaker. Depending on the results of those tests and the office visit, the doctor might call for additional procedures. We are hopeful that will not be the case.

Ellis Health Update - 171028

I did another one-mile walk on Saturday, 21 October. I then rested up on Sunday in preparation for Monday's tiring trip to Houston. I think I will be able to navigate the airport without assistance on this trip. I will have only my laptop computer, medications, a book and a few other light items in my carry-on bag.

Rosemary reminded me last night that there are possible side effects associated with taking Acetaminophen for an extended period of time and the single Tramadol pill I have been taking contains an opioid, so I decided to do a test run to see what my pain level might be without taking either. It is now almost noon the next day, Saturday and I have not taken any pain medication since a Tramadol at 2000 yesterday. So far my pain level has not increased significantly, to about level 4 at most and that only sporadically and associated with certain movements or body positions. For the most part I am unaware of any pain at all.

We traveled to Houston on 23 October. The shuttle trip to Phoenix was difficult. The shuttle's shock absorbers were long since worn out and we felt every bump in the road. The Ace Express shuttle is convenient in that they will pick you up and deliver you to your door; however, some of their vans are in pretty bad shape when it comes to comfort. They apparently do give adequate attention to repairs necessary to keeping vehicles running but comfort is not on their check list.

As already noted I planned to make the trip without resorting to the use of a wheelchair in the airport. I did manage to get through the Phoenix Airport without assistance; however, that was my limit: we asked for a wheelchair on arrival at Hobby Airport in Houston.

I saw Doctor Sugarbaker on 24 October. My visits to Doctor Sugarbaker are always preceded by an X-ray and a blood test. After being called to the examining room I undergo breathing tests administered by the nurse along with a six-minute walk, including a climb up and down a staircase, during which time my oxygen level is monitored and recorded. The PA who works with the doctor then examines me and gathers the X-ray reports, blood test results and other tests performed and reviews them with the doctor.

While this is taking place I am usually visited by the chaplain, the social worker and the dietitian. We have used the services of all of these individuals and found them to be very helpful. Teri, the social worker, provided guidance when we needed a place to stay and when we needed to purchase a walker for my release from the hospital; Cheryl, the Dietitian, spent a lot of time making sure we understood the options for making sure my special dietary requirements for a speedy recovery were met; Tony, the chaplain, patiently listened to our myriad complaints about such things as the tiring trip, the weather and other frustrations before offering sympathy and a word of cheer.

By the time Doctor Sugarbaker arrived for the 24 October appointment, all test results had been collected and reviewed so his questions and comments were brief and to the point. Basically, things still look good. My recovery from surgery is better than expected. When I remarked that my daily one-mile walk left me exhausted, I was told that a one-mile walk was more than had been expected at this point.

The bottom line is that I am to return to the clinic for a CAT Scan, more blood work and another visit with Doctor Sugarbaker on 9 January. Eventually he will discuss my progress with Doctor Lindquist, the Arizona Oncologist, and decide on additional chemotherapy to be performed in Arizona, likely four or five sessions.

We returned home as scheduled on 27 October. This time we made sure to arrange in advance for wheelchair transportation at the airport and I also took a Tramadol while waiting to board the plane in Houston. The pilot had to return to the gate to unload an unruly passenger, so we were about an hour late taking off. However, the Ace Express shuttle was waiting for us when we landed in Phoenix and we were home by mid afternoon. I guess the wheelchair transportation and the Tramadol must have done the trick because I was in much better shape when we arrived home than after the flight to Houston.

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 - 170512

At the Tuesday, 25 April visit with the oncologist we reviewed the results of the CAT scan taken last Monday along with the lab tests from the last blood draw (Friday, 21 April).  The blood tests all showed my white cell count to be OK but that I am still anemic as usual.  The doctor didn't seem worried about the anemia, but maybe I will increase my intake of salty potato chips and blackstrap molasses just in case.  The really good news is that the tumor is shrinking and in anticipation of that, based on results of the previous blood tests (the last previous to this Mondays tests), he had added something (he called it bone cement) to fill in the defects left in my rib as the cancer retreats .  Based on these results he recommended continuing the tri-weekly chemo for another nine weeks.  My next office visit and chemo is set for 17 May at 0930.

A  chemo session was originally scheduled to immediately follow the Tuesday, 25 April doctor visit; however, my blood vessels absolutely refused to cooperate.  The nurses successfully inserted needles in five different locations (pretty much without pain, I might add), but my body had apparently learned that they were trying to insert a foreign substance and just refused to accept it. That meant that the installation of a port to facilitate injections would be necessary.  The nurses said that if we could get a port installed the next day at the hospital in Cottonwood and still get to the Oncology Center in Sedona by 1400 they would do the chemo the same day.  That was important to me because I must take a steroid (dexamethasone) twice a day -- the day before, day of, and day following each chemo session.  I get little or no sleep on the days that I take the steroid and by delaying the chemo only one day, I could just continue the steroids for one more day rather than start a new three-day regimen of sleepless nights.

The surgeon at cottonwood saw me late in the day on the 25th (the day for which the chemo session was originally scheduled) and got us scheduled for surgery to install the port (Bard Power Port on right chest with a lead to an artery near the heart) early in the morning of 26 April. When he installed the port he left it ready for chemo and we were in Sedona early enough that the treatment was completed and we were home a little before 1400 on the 26th.

On arrival back home, we were faced with a sprinkler leak where I had apparently damaged the system while planting flowers the day before. That took about 45 minutes and when finished I was feeling spry enough that I finished clipping the already-bloomed irises except for the few alongside the backyard steps/walkway that were still in bloom. The exercise did me good after being confined to hospital beds, wheelchairs, car seats and chemo-treatment chairs for almost eight hours.  The only good part of that confinement was that I knew nothing from the time they wheeled me into surgery until they were ready to take me out again and that I managed to get in a couple of quick naps while undergoing chemo. With the port in place, the chemo went very smoothly.

The few days following the port installation and chemo session, were pretty rough. I had diarrhea for two days and, a severe reaction to the anesthesia used during the surgery to install the port. I did not feel up to resuming my daily walks for several days. After that I recovered nicely and even went for a 3.2-mile walk to Tavasci Marsh with the Skyliners Wednesday walking group on 10 May. I blame most of the problem on an adverse reaction to anesthesia and expect the chemo session scheduled for next week to go smoothly.

Before completing and posting this report, I waited for the doctor's visit report. Arizona Oncology has a website that should make such information available. However the website provides nothing resembling office visit reports. They do complete the reports in a timely fashion and I thought that I had requested that they mail me a copy as soon as it was completed. However, I apparently failed to make clear what I wanted and, after waiting a week, I called to find that they had not understood what I wanted. To make matters even worse, they really did not understand what I was calling about and I had to call again the next week. Finally, after talking directly to the doctor's assistant, I received the report in the mail today, just five days before my next scheduled visit.

Ellis Health Update - 170929

At the time of the doctor's visit on 12 September I was very weak, prone to collapse whenever I tried to stand. In fact I had to resort to a wheelchair for the trip from the hotel van to the doctor's office. We at first thought that my weakness was caused by the increased pain medication and reduced it accordingly, alternating between Tramadol and Tylenol on a three-to five-hour frequency. That did not significantly affect my pain level which, by the way was now quite tolerable. However, further investigation indicated that the weakness was caused by a drop in blood pressure when I stood and I was given a new prescription for my low blood pressure.

I returned for another doctor visit today (14 September) and found that things seemed to be working well. I had a new chest x-ray, a blood test and walking test (apparently standard tests for doctor visits at Baylor Clinic) The doctor made a few further adjustments to my medication, mainly stopping one of my blood pressure medications (Amlodipine) and scheduled me for a return visit on 19 September. I was also told that I may be allowed to return home to Arizona late next week. However, I will need to fly back to Houston after about a month for further testing.

After today's visit to the clinic, I slept deeply for almost two hours and then went to the Olive Garden for an “eat one, take one home” special. We now have several days worth of food tucked away in the refrigerator.

On 19 September, Doctor Sugarbaker was detained out of town with a family emergency and I saw his PA. She found things to be looking good but asked that I return on 21 September to meet with Dr Sugarbaker before being released.

The 21 September doctor visit was scheduled for late in the morning and we would need to take the 1000 shuttle to the Clinic. We informed the motel that we would need to stay another day or two. Rosemary had informed them earlier that we might need to extend our stay. However, despite verbal assurances that an extension would not be a problem, we now found that they had already booked our room and were full up; so we were required to move to another motel. We thus had to pack all of our gear and place it in a locker before catching the shuttle. We barely made it. I was given the tentative OK to travel back home; however I was referred to a cardiac specialist to make sure my weakness was not related to a heart problem and the release was contingent on his findings. After an EKG and an examination, the doctor declared my heart to be “absolutely normal.” He did suggest that I wear support hose, especially during the flight back to Phoenix, to alleviate the sudden changes in blood pressure I have experienced when standing up. Luckily, they were able to schedule for later that same day. The down side of this is that we were on the go from early in the morning until about 1700.

We spent the night at the Holiday Inn and caught the airport shuttle, took a morning flight to Phoenix on Southwest and then the Ace Express to Cottonwood. The flight to Phoenix followed by a 2.5-hour shuttle trip to Cottonwood was exhausting and left me feeling very lethargic for the next couple of days. However, I am now steadily improving: My appetite is better (meals are no longer just a duty to be performed), I walked about 0.4 miles along neighborhood streets yesterday (I used the walker on the street but have managed to do without its assistance within the house)and I have no significant pain so long as I hold to my pain medication regimen (0200: 1 Tylenol, 0800: 1 Tylenol, 1400: 1 Tylenol, 2000: 1 Tramadol).

Day before yesterday, I did feel some nerve pain and resumed taking Gabapentin (presently taking one a day which seems to work well). Although essentially pain free with the medication I am taking, I am still very weak and need a lot of rest. I usually go to bed about 2100 and sleep for around 10 hours, interrupted by a few bathroom breaks. After breakfast, I normally do a little clerical work, catching up on the six-week stack that piled up while we were in Houston. If I still have enough energy after that, I add a few words to this document. Otherwise I take a 1.5- to 2-hour nap, eat lunch and do my daily walk around the neighborhood. Yesterday (27 September) I stretched the walk a bit to make it an even half-mile. Today I saw Doctor Howland, my primary care physician, in the morning and reviewed the medications I am taking.

Keeping up with medications has become quite a chore while being treated by Doctor Sugarbaker at the Baylor Clinic, Doctor Howland at Northern Arizona Healthcare and Doctor Lindquist at Arizona Oncology. Daughter Diana got me organized initially with a spreadsheet before she left Houston. Even with that it was taxing my abilities to make sure I took everything I was supposed to and at the proper time. Just when it all started to make sense, I would be overtaken by fatigue and have to stop for a nap. Luckily Rosemary was there with her orderly mind. She took Diana's spreadsheet and all of my pill bottles and soon had everything organized. I do keep track of my pain medications; otherwise, I just take he pills placed in front of me.

Ellis Health Update - 170909

My operation was performed on 21 August 2017. When I awakened after the operation, the doctor informed me that he was able to remove “all of the cancer visible to the naked eye without removing the lung.” The actual surgery was followed by a heated chemotherapy treatment. When I first became aware enough of my surroundings to remember anything, a nurse was explaining that the breathing tube in my throat would likely be removed the next day. The tube of course made talking impossible. But then I don't remember having anything to say. Likewise, it was not possible to swallow anything; however, I was being fed intravenously so didn't need to swallow.

The nurses and doctors in the Intensive Care Unit were without exception terrific in their attention to patient welfare. Considering that Hurricane Harvey chose my period of residency in ICU to wreak its wrath on Houston and that the staff that could even get to the hospital were working on a near around-the-clock basis with only infrequent sleep breaks, I was amazed at the never-failing friendly, courteous care they provided. For instance, I noted that my night nurse often used a flashlight at night when she needed to check a machine. She thus avoided turning on those blinding overhead lights seeming designed to wake the dead.

My night-shift nurse in ICU for all but one night of my stay was a friendly, efficient bundle of energy named Rina. She came on shift one night with the breezy announcement that we were taking a trip through time and space for tests the doctor had ordered. She then, in a reverse Cinderella's coach move, declared my hospital bed to be a spaceship, appointed herself Captain, recruited two additional staff members (I think they were called called Oz and Laughing Man) as crew, hung all of the assorted machines and devices I was hooked up to on an instrument tree and and/or my bed itself and guided us out of the room and into the passageway. There she entered zoom mode (spaceship lingo for warp speed I assume) by uttering the command “Enter Zoom.” The ships computer then acknowledged her command by saying “Entering Zoom Mode” and we were off down the passageway to the elevators. (Note. I was never sure whether the spaceship's tinny sounding command response was coming from a speaker or a crewmember.)

Traveling at warp speed, we arrived at the elevators in short order, shifted out of zoom mode for the elevator ride and then back into zoom for another short trip to the back entrance to the Emergency Room where a technician was waiting to perform a PET scan. Somehow the crew managed to transfer me along with all of my attached tubing and sensors to the movable bed of the PET machine. After the scan was completed, I was moved, along with all of my attached paraphernalia, was moved back to the “spaceship” and we returned to the ICU Unit.

I really do not remember for sure just when I was moved from the Intensive Care Unit. By then Julia had returned home to resume her duties as a teacher at Diamond High School in Diamond, MO. Diana had managed to take a few more days off work in order to stay with her mother until I was out of the hospital. Julia and husband Rick Allison who had driven from their home in Joplin, MO managed to get back home before the hurricane struck. Diana and Rosemary hunkered down at the hotel to wait Hurricane Harvey out. I was safely ensconced at the hospital and they were snug enough at the Staybridge Hotel. Although hospital visitation was impossible we could console ourselves with the knowledge that we were all safe and comfortable in our isolated domiciles.

I spent a very short time in the Intermediate Care Unit before having the last of my four chest drain tubes removed and being cleared for release on 30 August. The photograph shown here (right), although it may look like the first awakening of Frankenstein's Monster, actually shows me on the day I left the hospital.

However, I had steadfastly answered the social worker's questions as to what equipment we had at home based on what was located at our home in Cottonwood, never considering the fact that I would need to remain in Houston for an extended time for post surgical care. As a result, procuring a walker, something absolutely essential before being released from the hospital, turned out to be a mad scramble. With the help of the social worker we finally located one with a seat in case I suddenly needed to sit down and easily-applied brakes to hold the unit in place while I did so.

The supplier would deliver the walker that day but could not provide a specific delivery time. We finally decided to change the delivery location from the hospital to our hotel, take a hospital wheelchair to the shuttle van and use a hotel wheelchair from the van to our room. As luck would have it we met the walker delivery man just as I was wheeled out of my room, so we took delivery and Rosemary rolled the walker along with us.

I had a lot of pain and trouble sleeping for a few days after leaving thr hospital. We returned on Tuesday, 5 September for a follow-up office visit and a couple of tests. The doctor adjusted my medications, doubling my bedtime dosage of tramadol (two pills instead of one), doubled the amount of Tylenol I was taking, added Advil and adjusted my schedule to make sure I was taking something for pain once every three hours. Hr also had us buy a pain patch to apply to my back. Rosemary then took charge of all my medications, a chore that had proved too much for me. The next few days went much better: the change in medications took care of the pain and I slept much better, getting my normal nine hours on 7 September.

Other than having frequent fainting spells (thank goodness for the seat in my walker), I was normal but feeble by 7 September and we went to the Olive Garden for dinner.

My next followup visit is scheduled for 12 September and I hope to get a better feel for when we can leave Houston then.