Chapter Two – Minimal Residual Disease (January – May 2018)
March 01, 2020- 15 min read
The Great Cancer Adventure
Chapter Two – Minimal Residual Disease
For New Year's Eve, Betty and I met her brother Mike for dinner, and when I went to the toilet afterward, plodding along on my walker, I felt what turned out to be little screws in the hip brace come out and fall down the inside of my pants leg and into my shoes. Good thing for that, or otherwise these screws being so small, might not ever have been found. The three of us went home, and they tried to put the screws back into place while I lay supine and still, as I wasn't supposed to move much without the brace. (The ER Doc at the hospital in Houston failed twice to pop in my hip, and following protocol, tried to discharge me from the hospital, but I refused to go, so it was left to the Ortho Doc on call to admit me and try again, as he had a better bag of tricks. Even so, it took three tries, which likely has taken its toll.) Finally, Betty and Mike got the screws all back in place, no mean feat.
Got an appointment with my STL Ortho Doc, who was able to have his tech guy make certain those little screws were where they needed to be; they were, thanks to Betty and Mike. I’m going to be doing 4-6 weeks of PT to build up my hip and leg, resulting from the artificial hip dislocation. The Ortho Doc desperately wants to avoid surgery, as he says there’s not a good alternative, so I do too. Consequently, I’ll work hard on the PT. The Great Cancer Adventure continues.
Essentially all my chores and other matters have fallen on Betty. I tell anyone who offers to help me/us, to ask her what she needs or wants. I cannot imagine doing this alone. She truly is The Champ.
Next week's a crossroad (not to put too fine a point on it) in that there's a PT scan on early Tuesday, with PT and labs later that day, followed by a meeting with the Oncology Doc first thing Wednesday morning, where he'll give me the news, good, bad or otherwise about my current assessment and possible treatment options. I am hopeful of course, and yet at the same time working to manage expectations, so am expecting to hear further treatment of some sort is indicated; he told me at the beginning esophageal cancer is hard to treat, and I do have some pesky lymph node involvement at that same site, so we'll see. To further complicate matters, there is this business of the dislocated artificial hip, apparently exacerbated by recent chemo. Always something, right?
Grateful my son, Peter, can be with Betty and me for all this. He's a stand-up guy; she's The Champ, and I am a lucky man.
During this Great Cancer Adventure, I don’t know where I would be we’re it not for The Babe, The Champ, Betty Ann O’Dea.
I will not be having a PT Scan tomorrow after all, as my new insurance company (my employer changed companies this year) wants a different, cheaper test first. Consequently, likely this will mean the appointment with the Oncology Doc on Wednesday will also need to be postponed; I just called them for verification. All of which is to say, while it looked like I would know my future health outlook by Wednesday, there's uncertainty instead. And so it goes.
After having a PT scan denied at the last minute by the new health insurance company earlier this week, the oncologist's office held a peer-to-peer conference call with them and got it re-approved. I've called the hospital pre-certification staff to schedule it but so far haven't connected; once that's scheduled, I'll see that Doc again for the next steps. All this'll hopefully fall neatly into place in a few days so that not so much time will have been lost. Or so it seems. One of the reasons this fell into place was Betty's insistence the insurance company does its job. Both Peter and I, who were with her when she called the insurance company, were rather caught off guard and impressed, but really we shouldn’t have been surprised and maybe we even weren’t, that she can be fierce.
Part of why Betty was successful with the insurance company is because she was taught the secret handshake by someone who used to work in that world, someone who overheard our conversation about all this while waiting for my last PT appointment and simply inserted himself in the discussion. Once again, I am a most fortunate man.
After many sessions of physical therapy from someone who not only was schooled in Orthopedic PT but also in Oncology PT, and work on my own, the orthopedic Hip Doc let me out of the brace, though he did suggest I keep it nearby and still sleep with it at night to help ensure I follow the proper precautions, something to which I readily agreed, in as much as we have come too far and have too much at stake to have this go wrong. I’m still on the cane. The PT scan originally scheduled weeks and weeks ago for this past Tuesday was rescheduled for this morning (insurance company snafu noted earlier, or perhaps really just a cost-cutting tactic, aka a stall, on their part), after being resolved in my favor in no small measure due to Betty's insistence. In any event, I don't meet with the oncologist until this afternoon, rather than this past Tuesday as originally scheduled.
Well worth the wait, however, as the news could hardly have been much better. While I am NOT “in remission” per se, per the Oncology Doc, the test showed “minimum residual disease”, which is welcome news indeed and about as good as it gets. So good to have Peter with The Champ and me when we first heard that phrase.
My next test is in mid-April, which should provide ample time to recover from the dislocated artificial hip injury (6-12 weeks in a hip brace) followed by an appointment with the oncologist to see what’s next.
After a rough few months, we’ve had a couple of weeks of very welcome news. I am a most fortunate man. Wow!
I guess I need to run as a Democrat for the US House of Representatives in the Missouri 2nd District.
I did run for the Democratic nomination for the United States Congress, something I felt a calling to do. My campaign consisted of attending pretty much every function to which I was invited and making Social Media posts (rants, of course!) against the Republican incumbent but never disparaging any Democrat. Being accurately described as “a pure protest candidate”, when asked “If nominated, what would you do first?”, I responded, "Demand a recount!". I have it on good authority (though no one confronted me with this) that some of the Party leadership wished I would simply go away, but I didn't. I hung in there until the end and, while I came in sixth in a five-way race, likely I brought a few voters to the polls who otherwise might not have exercised their franchise, ending up with some 4-5,000 votes in my favor. More than I thought I would get. I met some amazing and wonderful people along the way, some of whom I am still in touch with.
As reported previously, I no longer have to wear the hip brace during the day but still, need to wear it at night and otherwise take it easy with this injury. I am still on a cane, but I am back to driving, short distances during daylight anyway. Very light workouts at the gym aren't far behind. Follow up with that doctor is in three months. Met with the Radiation Oncology Doc Wednesday morning and so far anyway no residual effects from the radiation which ended a couple of months ago, so I don't need to see him for six months.
Tests to see if I still show "minimal residual disease" three months after the PET scan established that a couple of weeks ago, are scheduled for mid-April. I am a most fortunate man. I’ve survived cancer, at least for now, and have enjoyed the embrace of family and friends. Wow!
This morning, I went to the gym for the first time in months. Light workout of course, and in fact, I was in my street clothes, including a tie, but I did go back and did a little something. Yesterday, I went to Starbuck's, all by myself, me and my cane!
Zen calendar thought for the day for Monday, March 12, courtesy of the Dalai Lama: "If you want others to be happy, practice compassion. If you want to be happy, practice compassion."
Zen calendar thought for the day for Tuesday, March 13, attributed to Rumi: "I learned that every mortal will taste death. But only some will taste life."
Following the wise counsel of some of the members of Writers Under the Arch, or WUTA, the writers group I co-founded here in St. Louis, “to include feelings as well as facts”, this is as good a time as any for me to note that over three decades ago I found a spiritual path which works for me and includes daily prayer and meditation. Before then, I believed in God, went to church (religiously?), and never prayed; now I don’t believe in God, don’t go to church, and pray twice a day. The meditation, just another form of action to my mind, includes brief passages coming from eight different sources, including the Bible, which I’ve read cover to cover over four times to date (when I finish, I simply start over again the next day), as well as a daily Zen calendar, among others.
While I don't "officially" retire until May 31, today's my last day at the office being involved in the organization's day-to-day activities. As you might imagine, after almost 26 years here, this is a bittersweet moment. It has been my honor to have been affiliated with the American Association of Orthodontists Foundation for all this time. I have met some wonderful people and feel like I've contributed to Civil Society here and throughout my 40+ year career in non-profit management and resource development. Typically, I try to keep my work life and my personal life separate, but since I am leaving....
In January, I had a PET scan which showed there was "minimal residual disease", something that is, of course, great, good news. On Tuesday, some three months later, I had a CT Scan, which showed there was "…near complete response to radiation and chemotherapy. Subtle FDG uptake still identified with and (sic) a single posterior mediastinal lymph node."
All of which is to say, the esophagus looks to be fine, with some thickening (which I can live with, as I can still swallow OK), resulting from the radiation way back in the fall, but there’s still some question about one of those original four pesky lymph nodes. The oncologist seems to think this could merely be the result of some persistent inflammation (my Pet Cough mentioned in December of last year), or it could be the result of residual cancer, so I’m to have another endoscopy, with biopsies in a couple of places in that vicinity.
There’s at least a 50/50 chance this will result in good news (and frankly, my chances might even be better than that, as there’s essentially no clinical change from the first and the second tests), but if it there’s still cancer, then surgery is indicated, not what I was expecting, frankly, having been advised by the appropriate surgeon way back in the fall that this is something I would want to avoid if possible as it’s 1.) a serious procedure (hospitalization is 9 days, give or take), and 2.) a life-changing event (I’d be left with the effective use of only about one-third of my stomach.) I am of course hoping (expecting?) the best but preparing myself for the worst. None of us get out of this life alive, now do we?
Should the news from the endoscopy be good, then quarterly I will, alternately, have a PET and a CT scan and an annual endoscopy, and be considered “in remission”. Interestingly, I am "clinically" in remission now, in that nothing shows cancer in the tests and there's no change from the PET to the CT, but this needs to be confirmed "pathologically" with the biopsies from the endoscopy.
Heard from the oncologist a moment ago who told me the pathology report came back positive for "recurrent, persistent adenocarcinoma." Making an appointment to see a surgeon next week to see what he thinks. The Great Cancer Adventure Continues, damn it!
Unfortunately, we don't have a resolution for an action plan. Short version is when we met with the thoracic surgeon today, he informed us the procedure in mind requires not only him but another surgeon, a general surgeon, and this one will be much more concerned with the mesh in my abdomen (from a perforated bowel and temporary colostomy from years ago) than is the first one, so I need to see him, too, as it turns out. (Apparently, if this were a more routine case, the first surgeon would speak for them both, but it isn’t, so he can’t.) I see surgeon #2 next Thursday, and we’ll go from there.
This surgery (to cut out part of my esophagus) is a major undertaking, with a recovery period of several weeks, even without any complication. I'm leaning toward the surgery, but I want to hear more about the mesh complication, so the surgery might not make sense, ultimately, depending on the circumstances. Surgery is the only "cure" at this point, but there are other treatments possible, e.g., more chemo. I'll decide after next week. Of course, this step to "cure" my cancer (remove the tumor) assumes there is no disease elsewhere, and, while there were no signs of cancer elsewhere, scans can only read down so far. I could have the disease even after the surgery, and have my overall health be left dramatically compromised.
Surgery is likely a couple of weeks away, at least at this point, so it looks like I will be going to DC after all (last business trip before "official" retirement on May 31st), but even that’s not certain just now. Disappointed there isn’t more clarity, but there you are.
Curiously, Betty and I are discussing life and death matters (and make no mistake!), but I'm more worked up about St. Vincent de Paul NOT hauling away our old sofa when we have a new one being delivered tomorrow. (We got that sorted out all right, but not surprisingly the feeling of being out of control over a couch, was what was eating me up and not cancer. Metaphorically speaking anyway.)
I have a decision to make.
The PET Scan in January showed "minimal residual disease", which was, of course, great, good news. The CT Scan in early April showed essentially the same thing, so a biopsy, via an endoscope, was indicated to see if there was any cancer present, something I had about a month ago. Since then, we have been in discussion with my oncologist, who recommended a life-changing surgery, which offers the chance of a cure (i.e., cut out all existing cancer, which unfortunately is still there), rather than additional chemotherapy, which is not curative but can prolong life. The surgery involves both a thoracic surgeon and a general surgeon and has potential complications of not only those associated with any surgery but also for this particular one; typically requires a 9 day (or so) hospital stay; and is further complicated by my surgery history, i.e., I have mesh in the abdomen due to diverticulitis and a perforated bowel resulting in a temporary colostomy.
We’ve met separately with the oncologist and both surgeons at Mercy, all of which took some time, and we’ve reached out to an oncologist and the thoracic surgeon at a different hospital for a second opinion from both, which also takes additional time. This morning, I have another PET Scan, Monday we meet with the second opinion oncologist at Barnes Jewish for the second time (to discuss if a clinical trial is an option), and Wednesday we meet with the second opinion thoracic surgeon for the first time. To date, we don’t have an appointment with a second opinion general surgeon and need to find out if this seems indicated. After that, I have to decide.
There's just not enough information now to make a decision, perhaps not even a tentative one. Even so, due to various factors, I'm leaning against the surgery, although this may very well be the ultimate choice. I am fortunate enough to have loved ones to help me look at all sides and take, to the greatest extent possible, the emotion out of the equation. This includes Betty of course, who is with me on a day-to-day basis, but also daughter, son-in-law, son, and daughter-in-law, all of whom have been encouraged to offer their advice and counsel, which I value; indeed, I am a lucky man to have such resources, and everyone has been helpful. I have a form of cancer that's "difficult to treat and likes to come back", so even if surgery were to get all of it now, it doesn't mean this would settle the matter. The surgery would mean a difficult couple of months and some substantial life changes similar to bariatric surgery rather than some discomfort and fatigue from chemo (i.e., the next regimen would be an infusion every two weeks for several months at least), but which doesn’t offer a cure. Yes, indeed miracles happen, and one should be open to the miraculous, but one can’t count on Divine Intervention. Hope is not a strategy.
Since no decision is also a decision, I'm setting a deadline (curious choice of words!) of the end of the month at the latest, and perhaps by this time next week.
Getting a second opinion (which led to more testing that might not otherwise have been approved by the insurance company) at Barnes resulted in learning there is now (or perhaps still!) some lymph node involvement, which means the surgical option is effectively off the table anyway, eve had I found it more appealing. So we are back to chemotherapy of the three treatment options, i.e., do nothing and last 6-12 months, surgery perhaps followed by chemo, and chemo perhaps continuously or until I just can’t take it anymore.
It looks like I can get into a chemotherapy clinical trial through Barnes/Siteman Cancer Center and in fact, they have a couple of options. One involves immunotherapy, which I'm leaning toward, even though it's in the medical center which would mean a half-day each time. The other option is at a Barnes location which is much more convenient and efficient, but, as much as I like convenience and efficiency, I'm interested in the immunotherapy, so likely that will be the way I'll go, even if this means I'd have to interact with hospital support staff who seem more interested in their conversations with coworkers and their comfort than in taking care of patients. Like at the Barnes location in the Medical Center, where the focus certainly seems to be other than on the patients. For example, while having lunch in their cafeteria once, I almost got run over by one of the hospital techs who wanted to get to some morsel before it was gone! Which led me to wonder if the Back of the House isn't up to standards, does this mean the Front of the House isn't either? Their (Barnes) reputation, on the one hand, is they do good work, but on the other hand, it's that some of their Docs are more interested in signing up patients for clinical trials to further their careers than they are in providing good care. Mercy, a suburban hospital chain, perhaps provides better care, but they don't have the clinical trials. Does the choice have to be between good medicine and cutting edge science
We see the Second Opinion Oncologist at Barnes on Monday and go over the options with him then. I do want to get going on something which makes sense since I haven't had any treatment for five months. Not good news that the disease has spread or powered through the initial radiation and chemo. Even so, I had reservations about this surgery for many reasons, one of which is it's often followed by chemo anyway, and I didn't want to have to go through chemo, which is nobody's friend, after having a difficult and life-changing procedure. And, if after a round or two of chemo, if there's no lymph involvement, then surgery would once again be an option, at which time I might look at this differently, but for now, I’m leaning towards chemo.
In reflecting on all this, I'm reminded I took advantage of the kids, Betty and I all being in the same place at the same time (Washington DC for the very last business trip of my career), where we went to dinner one evening at a fine dining restaurant. There, I laid out the decision I needed to make regarding whether or not to have the surgery. Often, simply asking the question out loud results in an obvious answer, and while I was already leaning strongly in favor of having additional chemo rather than surgery, it was worthwhile to blow a bundle on dinner and have my family focus group offer their thoughts over cordials and dessert. While acknowledging that the final decision was mine and stating that they had each understood the question I'd raised, the consensus seemed to be that my inclination to forgo the surgery made the most sense. They were, however, understandable quick to agree with me that, my having the final decision, whatever happened would be on me, the outcome come what may. Indeed, I listened, but since this is my life, this was also my call. Period.