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.