This post is for my own analysis of the unimaginable journey my family has been on since early December. These are observations of events from my point of view, recounting how things happened, when they happened, and where we are now. My father is currently a patient at the John L. McClellan Memorial Veterans Hospital in Little Rock, Arkansas.
Note: In an effort to keep things more observational I refer to family members as my dad, my mom rather than Daddy, Mama, etc or by name…I know most of those reading this will know to whom I am referring. When I write “we” I really mean my parents, although our entire family including my brother and I and our families have been involved in this process.
My dad starting having problems with fatigue, loss of appetite and weight loss in 2019. I don’t know the exact date that he began noticing the issues but in reviewing his medical records, I do know that he had quite a bit of bloodwork in June that showed normal levels of most everything they tested for when there were some labs run for Lyme Disease and Rocky Mountain Spotted Fever. He just knew something wasn’t “right”.
Fast forward to December. My dad had been to his doctor with the VA in Conway several times pursuing an answer to some of the symptoms he had been having but was – for lack of a better word – brushed off by his primary care physician. While we were having our annual “tree decorating day” on December 1st, my mother mentioned that he had a chest CT scheduled for December 9th, both because of a persistent cough and to monitor the status of some nodules that his doctors felt were benign. Around the same time began to push for an endoscopy/EGD – he wasn’t having issues swallowing, just had a “full feeling” as well as the loss of appetite and weight loss that had been plaguing him.
He received a phone call that week that the VA was able to work him in for an EGD on Wednesday, December 4th. We weren’t really anticipating anything being seriously wrong but thought that the test might show a hernia or other issue that could be resolved and treated. My mother called me after the appointment and told me that a large polyp was removed from his esophagus to be biopsied. Because the words “polyp” and “nodule” were used rather than “mass”, even I, the master of the worst case scenario, didn’t think it would be cancerous.
They were told the pathology results would take some time to come back; in the meantime, that next week on Monday, December 9th, he had the chest CT scan. Now as a former cancer patient who still receives follow up scans, I have scanxiety for both myself and others but we didn’t really feel this particular test would show anything nefarious. I was on pins and needles waiting for the results of the biopsy though. Every day that passed was another day of not knowing and I know that my mom and I both felt that we wanted to get the results so we could quit worrying about it and get on with the Christmas season.
On Tuesday, December 10th, I left work on an errand for my boss, to take a laptop to Best Buy for repair. While waiting at the counter, I received a brief text from my mom that read something along the lines of “bad news, call when you can.” I vividly recall that sinking feeling of fear, the sensation that your blood has turned to ice in your veins as I abruptly told the store employee that I had to go make a call and walked the few steps back to the parking lot, sat down in my vehicle and dialed her number.
I could tell she had been crying as she told me that it was cancer. But that was not the worst of the bad news. The calls that he received regarding the results of the esophageal biopsy and the chest CT came within moments of each other. Although his lung nodules were stable, there was an incidental view of the liver caught on the CT which indicated there were “numerous” lesions in his liver that were suspicious for metastasis.
I have lost enough friends to cancer that I know what a diagnosis of liver metastasis entails. So I took this news as pretty much a worst case scenario. We still held out hope that maybe the lesions were benign or scarring – we had no information on the size or characteristics – or that maybe they were treatable. The rest of that afternoon passed in a blur as I went back to the office and told my coworker (who I had already called) and had to break the news to my oldest daughter. I sat in the floor in her office and we talked, cried, and researched.
There was some delay in the “what’s next?” arena as we were dealing with two different departments – the gastroenterologist regarding the EGD and the primary care doctor for the chest CT. Although both tests showed concern, neither were initially aware of the others results. A diagnosis of esophageal cancer usually warrants a referral to a surgeon. When the cancer is caught early, and there is no metastasis, a surgery called an Ivor Lewis esophagectomy can be performed that removes the tumor and cancerous section of the esophagus and reconnects the remaining esophagus to the stomach. It is a risky, invasive surgery with a long recovery period but it is presented as the only “curative” option. Surgery however, with any cancer, is usually not a treatment option when there are other organs or nodes involved so additional diagnostic testing is always done before meeting with a surgeon. That is why my dad was set up for a PET scan the next week and an abdominal CT with contrast was ordered as well – the CT he had had was for his chest and only showed part of the liver.
That night of the phone calls confirming the cancer diagnosis was also the night of the high school band’s Christmas concert. As my parents have been present for every concert, performance, and play ever for their grandchildren their not going was not an option. All of us agreed to tell the “younger kids” – my younger daughter and my nieces and nephew about their Papa’s diagnosis until after the concert. When we finally did tell our younger daughter in the car on the way home, the tears and the questions without answers, flowed.
Over the course of the next week, life went on; work, school, and holiday activities continued for us and everyone around us. I began to realize that the “if…then” philosophy I tend to rely on was not going to work for this new reality we were facing. We were not going to have a resolution to this issue anytime soon and even when we did, that resolution was likely not going to be what we hoped. That weekend was our extended family’s Christmas party. My dad has four living brothers and sisters and we still gather each year on a Saturday before Christmas. There were sympathetic looks and hugs, everyone burdened with the knowledge that the youngest among them was facing a dire diagnosis. We went through the motions of a holiday celebration, the emotions bubbling beneath the surface as we tried our best to pretend everything was normal.
Monday, December 16th was the scheduled CT scan w/contrast and the PET scan was also set up for that Wednesday. A CT with contrast would supply an up close and personal view of the liver and other organs in the abdomen and pelvis, while the PET would provide a view from “eyes to thighs” and any cancer would present as “hot spots.” We weren’t sure when we would get results – with my scans, I often have them first thing in the morning so that I can get the results at an afternoon oncology visit, but this was a different facility with its own rules and timing. One thing I had requested was that my brother and myself be added to my dad’s contacts to share medical information. I often know “just enough to be dangerous” when it comes to medical results, but I did feel like having access to that information could be helpful throughout the difficult diagnosis process.
Which is how on Tuesday, December 17th, after a conversation with my mom asking if they had heard any results, I came to contact the nurse practitioner at the gastroenterology clinic. She was their point of communication because of the primary cancer being in the esophagus and the biopsy results would go back to them. I went into the conference room at work, got on my phone and called, hoping the results would be in. I don’t recall the exact words that he APN, said but “it looks bad” were among them as she then proceeded to read the radiology report to me. I won’t recite the entire thing but “innumerable peripherally enhancing lesions throughout the liver with the largest being …. ” was the way the report began. There was no doubt that the liver lesions were metastatic cancer from the primary tumor in the esophagus. And his liver was consumed with tumors, with large tumors in both lobes. The APN tried to give me some kind of encouragement for treatment, saying that chemo was an option, but I was already thinking ahead to the next conversation I had to have. I first called my sister-in-law to ask her what I should do but I knew I had to call my mom and tell her. I could not bear the burden of being in possession of this knowledge without them knowing.
That call was among one of the most difficult that I have ever had to make and I don’t recall what words were said. I do recall saying something banal along the lines of “it will be ok” and then thinking nothing will ever be okay ever again. After my mom told my dad the news, they then called the APN back themselves to get the report. There was little time to dwell on the pathology report though because the previously scheduled PET scan was later that day; after some coordination, we decided that my brother and I would go with them to the appointment. I drove to their house and walked in to my dad sitting on the couch and my mom rushing around getting ready to go. I didn’t want to upset anyone with tears so I just tried to keep things light until the elephant in the room made its presence known. I crossed the room quickly, sobs breaking as I flung myself down on the couch next to my father and he comforted ME as I sobbed.
The day after the PET, my dad was referred to an oncologist for a consultation. Due to the extent of the liver involvement, the chemotherapy and any other treatments would be palliative rather than curative. The definition is of palliative is “relieving pain without dealing with the cause of the condition”. As a brief aside, cancer is never cured. That is a misnomer. The best case scenario is for one to be, as I am, considered NED – no evidence of disease. There is no CURE for cancer. But with certain cancers across the spectrum, the cancer can be either removed surgically, destroyed with radiation, and/or stray cancer cells killed through chemotherapy and a level of “cure” can be achieved in which no evidence of cancer remains in the body. With my dad’s situation, this would never be the case.
We left that appointment without a definite start date for chemo, just being told that the oncologist would consult with her team and let us know. We went about our lives that weekend and my parents received a call on Sunday night to come in on Monday to start treatment. I think that everyone breathed a sigh of relief knowing that a plan was being put into action. We knew that the side effects were potentially serious but it was better than just sitting around waiting.
That Monday, December 23rd was the first day in a series of disappointing setbacks. Before chemotherapy will be administered, bloodwork must first be done to ascertain that the person’s body is functioning well enough to process the chemo. When this bloodwork was done, it was found that certain levels which reflect kidney function were elevated. With this information, the doctor decided not to proceed with treatment and to simply give him fluids and recheck his labs the next day – which would be Christmas Eve.
Traditionally Christmas Eve is the night that we have our family’s Christmas celebration. When we found out that my dad would have to be returning to the VA for possible treatment the next day, my mom made the decision that we would have our Christmas celebration that evening. Phone calls were made and texts were sent for – as the kids coined it – “surprise Christmas.” I went home to finish up a few things and my sister-in-law came through with the majority of the food and we managed to pull it off.
I would be lying if I said that Christmas was joyous and celebratory. We all put on a brave face, but the reality is that the undercurrent of sadness and uncertainty colored everything that evening. You only have to go back and look at the pictures to see that. We ate the food, we opened the gifts, but the uninvited guests of fear, trepidation and melancholy tinged our holiday.
Christmas Eve – unfortunately – was a repeat of the day before. His creatinine had fallen some, but it was still far too high to do chemo. He received for fluids and was told to hydrate as much as possible and return to attempt treatment the following Tuesday. On Christmas proper, we stayed home and the following days aren’t monumental in my memory. It was all very much a matter of waiting and seeing what would happen next.
Tuesday rolled around…December 31st…New Year’s Eve and my parent’s 49th wedding anniversary. His creatinine had dropped to 1.5 so after a round of fluids, the go ahead was given for the infusions – carboplatin and plactitaxil. They both have a myriad of side effects, as all chemotherapies do, but we had no idea how bad they would be. The day passed slowly as my mom and I sat in the waiting room and would periodically get updates from the infusion room. I stayed for the “education” from the chemo nurse before I left for the evening and they spent their wedding anniversary at home waiting for the other shoe to drop.
And drop it did…on Thursday, my dad began having sore throat pain and general discomfort but nothing that warranted a follow up with the doctor. On the way home from a visit to my father in law’s home on Saturday, I received a phone call from my mom saying that my dad’s fever had gone up above 100.4, the threshold for an ER visit. As luck (?) would have it, we were leaving Little Rock as they were leaving Greenbrier, so we were able to meet them in Conway and I took over driving and went with them back down the ER.
Blessedly, the ER was empty when we arrived around 8 p.m. and we were seen relatively quickly. Our nurse was excellent, caring, and attentive but we weren’t overly impressed with the doctor we saw. My dad’s temperature had gone down to 99 something by the time we were seen and the doctor only took a cursory glance at his throat, diagnosed pharyngitis and gave him fluids, a round of antibiotics, and sent us on our way.
I slept until around noon the next day and it was pretty uneventful until that evening when I got another phone call from my mom around 6:00 that evening telling me that they were headed back to the ER. He had a fever up above 101 and the pain in his throat had not abated. That visit led to an early morning admission to the hospital on the hematology oncology ward and the beginning of another leg of this journey.
The first few days, the treatment dealt with the most critical issues of his neutropenia – his white blood count was dangerously low at 0.5 – and his mucositis. Mucositis is “the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as a result of chemotherapy and radiotherapy for cancer”. Imagine the worse “ulcer” you have ever had and multiply that exponentially down your mouth and throat….it was hell for him. In addition, he had patches of thrush and still had fever that rose each day. Complicating matters was the fact that his kidney function was continuing to worsen. A variety of specialists were consulted over the next week, including oncology, infectious disease, and nephrology.
We have had few to no complaints about the care he has received at the VA hospital….at the time he was admitted, he was put in a double room with no roommate and my mom was able to use the other bed as she has stayed by his side 24/7, leaving only a handful of times to go to their home 45 minutes away to change, do some laundry, and have a brief respite. Perhaps respite is the wrong word; these trips home are more emotional and traumatic for her than restorative. Throughout that first week, they saw various teams of doctors several times a day. The mucositis, which had rendered even drinking incredibly painful and eating damn near impossible, was being treated but we were told it would require time to heal. He was in excruciating pain and finally consented to painkillers to try and dull the edges so that he could swallow minimally. His white count began to respond to injections of a cell stimulating medication administered in his abdomen daily. The week and weekend progressed. Unfortunately, his kidney function continued to deteriorate.
Because the treatment was truly proving worse than “the cure” the oncology team could not in good conscience recommend any more chemotherapy rounds and honestly even if it had been offered, my dad would not have accepted it. However, there was still hope to try and resolve the AKI – acute kidney injury – in the hopes that he might at least return to where he was before the chemo started. At the same time, the ammonia in his blood was rising – a probable result of the liver not filtering out toxins. This was leading to excessive sleepiness and tiredness. We had several difficult conversations with both him and the oncology team and all realized that we were not dealing with a great amount of time, even if his kidneys did recover somewhat.
On Tuesday, January 14th, a test was done to evaluate kidney function using the diuretic Lasix…although we thought we had a good result from the “challenge” as it was called, when labs were drawn the next day, we were told by the APN on the oncology team, that it did not appear that any treatment he was receiving was going to resolve the damage that had occurred. She had been the lone holdout who was optimistic that his condition would improve and when she made the recommendation to transition totally to palliative care, we all agreed.
Wednesday afternoon, January 15th, my mom and I had a conversation with one of the APNs from the palliative care team; although he had been undergoing what was considered “treatment” during the hospital stay, he had also been seeing a few members of the palliative care unit. She told us that she felt with the labwork and symptoms we were seeing that the timeline of life was down to “days”. We had planned to stay in the unit of the hospital we were in as long as possible but on Wednesday night, a room opened up and my dad was moved to the palliative care wing down the hall. I left the hospital as they were making the transition, which was one of the first times we had a real issue with how matters were handled. There was a lack of communication on the part of everyone and they were moved in a rush, with little to no preparation time. Some of the doctors orders were “lost in translation” so to speak and he didn’t receive all of his regular medication that evening that was allowed under the care protocol. My mom spent a rough and stressful night in a chair in the tiny room they were moved into. It was, and remains, totally understandable that once he was not in active treatment, he needed to be moved to the other wing so that the room – and two beds – they were occupying could be available for patients that needed them. The “way it went down” just left a lot to be desired.
Fortunately, they were moved to yet another room on Thursday, January 16th which is where they are now. It’s a very spacious room with two beds – one she can use – a couple of recliners, a private bathroom. And there is a family room right next door. There is a lovely view of downtown Little Rock and as hospital rooms go, it’s really nice. He has had a continual stream of visitors, from his brothers and sisters and other family, to old friends, to many members of the Patriot Guard, the motorcycle group he is a member of. The nurses and CNAs have all been excellent and the care he has received has been outstanding.
Throughout the day Thursday, the medication orders were all corrected and they were able to meet with more doctors on the palliative care team. Although he doesn’t received treatment for the cancer, he receives his usual medications for blood pressure, acid reflux, allergies, and pain medication upon request. But there are no labs drawn, no IV fluids or other artificial nourishment administered, and no resuscitation or other orders are on file in the event of a cardiac or breathing event. He is still cognizant and has capacity as we in the legal world like to say, talks with his visitors when he can and even jokes with the nurses from time to time.
It is now Thursday, January 23rd, a full week since we were told he only had “days”. But his kidneys appear to be functioning somewhat better than they were, he is still eating a few bites of various foods at each mealtime, drinking ensure, and drinking soda and juice regularly. He spends most of his time asleep, sometimes dropping off in mid conversation or when he is trying to drink or eat. Mobility is an issue and he is at great risk for falling. Although we are thankful he is still with us, this has presented a bit of a problem with his care. The unit he is on is for short term care…once a patient is stable and does not require extensive medical attention or monitoring, they no longer qualify to be a patient on the floor. He isn’t receiving active treatment so there is no real need for him to be hospitalized.
These facts led to the second issue we had with the communication with the doctors and hospital on this past Tuesday. After assuming that he would be able to stay here at the VA hospital, my mom was told that preparations were being made to send him home! This is a hot button issue with us and there are a lot of emotions involved in whether he is hospitalized or at home at the end. That is a subject for another time and I will address it later. In the meantime, we had to begin to think of making arrangements with a home hospice agency to transition him to care at home for the immediate future. My mom and I truly feel that my dad is presenting his “best self” when doctors and nurses are present and what we see when they aren’t there is the reality we are dealing with. Very little talking or eating, mostly sleeping, getting out of bed very little. No interest in any activities such as watching television or reading. But again as before, we are taking space in a room that should be available for a patient that needs it. When asked if he WANTS to go home, my dad has said since we arrived that he didn’t and he preferred being there in the facility with the nurses available for assistance in care. Is that the way he truly feels or is he worried about being a burden for his family caring for him at home? That is a question we are not likely to get an answer to so we have to do the best we can by him for the remainder of the time we have. We are currently in the process of contacting a hospice organization for a meeting and looking at the beginning of next week as a discharge date.
We don’t have a timeline or timetable. He has made most all of his final arrangements for “after” and we have worked to fill in the gaps for what will take place. Visitors have come daily – we have all been touched by the outpouring of love and support from both our family and his “Patriot Guard” family. This is not an experience I could have imagined we would be having right now….he is only 69 years old. But that is where we are….and where we go remains to be seen. But wherever this journey leads, we will go together.
-Karri Temple Brackett
January 23, 2019
Please continue to keep my father, Harry Temple, my mother Shirley Temple, and all of our family in your thoughts and prayers as we go through these difficult days ahead.