Chapter Four - Fighting Back (January – May 2019)

March 01, 2020

The Great Cancer Adventure

Chapter Four - Fighting Back (January – May 2019)

1/8/2019

Mercy Hospital here in St. Louis, which I no longer use for treating my cancer, contends that I owe them for something I paid in February of last year. The story goes, they're quick to turn to a collection agency, so I may need an attorney soon. Any suggestions? If so, please message me.

1/9/2019

(Here's a duplicate of the letter I just sent to Mercy Hospital here in St. Louis about their insistence that I owe them money for something they also show I have paid. Being convinced that they are about to hand this over to a collection agency, I really want to make their lives interesting. Not the people who provide the care, but the people who sit in the back rooms and churn spurious paper.)

I received yet another statement via the MyMercy.net patient portal, which essentially says what has been said previously, i.e., that I owe $2,888 for a Pet Scan on January 19, 2018, almost one year ago (see attached). What this statement does not reflect, however, just as the previous ones did not, is that I paid for this in February 2018, something you note, however, on my payment record (also see attached). Absolutely, I will not pay for this twice, and I have repeatedly drawn this to the attention of your business office. Still, your hospital apparently intends to set the stage for this to be sent to a collections agency, as I received a second bill for this (the first being in December, almost a year after the scan, which is a travesty in itself!) in this same patient portal billing message.

As much as I was grateful for the care provided there for my Stage IV esophageal cancer in the fall of 2017, after completing the chemotherapy and radiation regiments, I decided to undergo immunotherapy elsewhere. I certainly hope this is not the case, but I simply cannot help but wonder if this shoddy treatment by your business office, coinciding with that decision, isn’t somehow punishment for my having decided to go elsewhere for treatment.

Since you continue to bill me for something that you continue to show that I have paid, I request that this matter be resolved in my favor and that I receive a zero balance bill for these charges.

1/17/2019

(Something I just mailed to the president of Mercy Hospital here in St. Louis.)

Regarding your most recent statement on my account, I took the effort to review all insurance Explanation of Benefits, my American Express statements, and my checking account checks paid since January 1, 2018, and it would appear that I do indeed owe you something. It may even approximate or even match the amount of the latest invoice you sent on January 9th of this year. However, and not for the first time, I must point out that the $2,888 you say I owe you is NOT for a service in February 2018, which both you and I agree was paid in March 2018, but for subsequent charges in April 2018. And you have not provided me with a detailed statement of those charges, even though this has been repeatedly promised me since mid-December 2018, at which time you sent the very first invoice on this matter.

Even though I no longer use your hospital for my cancer treatment, I do want to do the right thing, and I do want to put this behind us. However, I will NOT pay you that amount, until you demonstrate in writing, the amount that I owe you and why. I may not have been born in Missouri, but I have lived here for 30 years, so you will have to “show me”. No phone calls please, including offers to read me a statement over the telephone, and no more robot calls asking me to call you, something that has transpired twice. Put it in writing or write it off!

You give me a detailed statement, and as long as this makes sense to me and matches the information I have (which includes refunds from you for overpayments, something that continues to baffle me!!!), then I will begin to make monthly payments.

I have made several disparaging remarks on social media about the way that Mercy does business and will continue to do so until you do your part to make this right. You may be interested to know that there are many out there who are as perplexed as I am about how you do business. Some of them, apparently even sicker than me (I have Stage IV esophageal cancer), are so overwhelmed that they have simply given up. I will not.

2/2/2019

Having had more than a little trouble swallowing here of late (which is always problematic but perhaps especially so with esophageal cancer), rather than wait another three weeks before doing any more testing (the original plan), I ended up having a C-Scan, rather than an additional immunotherapy infusion, followed by an endoscopy.

The scan results are in, and there is NO good news there. After the first round of Keytruda, all of my various bits had gotten smaller, but now not only have they NOT gotten smaller after this second round, they all seem to have gotten bigger and I have more of such bits than I used to have. Plainly, or so it would seem, Keytruda is not working for me anymore, which is, of course, the bad news, since I had good results at first, but the good news is that there are other options to be pursued in this arena.

The primary tumor, the adenocarcinoma in the esophagus, might be treated separately, depending on what the Endo Doc finds in the endoscopy; that is, if the location of the tumor looks like it might respond to cryotherapy, then he'll do that, so I might have two treatment plans or paths. One for immunotherapy or chemotherapy that might pick up where Keytruda left off and the other would be to be a part of this cryotherapy study by one of the foremost authorities in this field. After the tests, these two docs are to put their heads together and come up with options going forward that would address all these nasties. I should know more about the middle of next week.

At Cancer Treatment Centers of America (CTCA), I feel like I am in good hands. It's not my job to decide a specific treatment plan(s), but rather to communicate what the situation is and make strategic decisions. I did decide, for example, to go out of town to have options other than the more generic ones seemingly only available to me locally. I did also decide to opt for immunotherapy, as that seemed like a good idea at the time, just as it does now, and I have no regrets in that regard.

But Betty and I are both disappointed that Keytruda worked for me, but only for a while.

2/15/2019

While at CTCA for treatment The Babe and I had a wonderful Valentine's Day, complete with back messages (both), pedicures (both), manicure (her) and yoga class (her), followed by seeing a Rom-Com and eating bad movie theater food, but holding hands in between bites, topped off by a barely legible romantic short poem constructed from candied hearts. Great Date Night.

2/17/2019

In summary, the immunotherapy that seemed to be doing wonders for me, stopped working, and in fact, it's as if cancer clawed back all the gains that had been made, leaving me in worse shape than I was months and months ago. So we're off in a new direction.

I'm receiving chemotherapy, Folfox, which requires that I be hooked up to a pump for 46 hours. This treatment, which is at once a standard of care and commonplace, is something I should be able to get, really, anywhere. This is something that's given every two weeks, and so I'm looking for someone locally who can collaborate with my out-of-town oncologist, so that we do not spend all our time in the car, i.e., it's one thing to go out of town for several days once a month and yet quite another to go out of town for several days every fortnight. This kind of collaboration is not all that uncommon, but it's a matter of finding someone who will do this. Already have a referral, and am chasing that down, so we'll see.

2/26/2019

I vow to do my bit to disparage the reputation of Barnes Jewish/Wash U/Siteman Cancer Center for the shoddy manner in which they have recently treated me, as likely they have treated others in much this same shameful manner which is not something that can be allowed to stand.

I have been looking for the past couple of weeks for someone locally in STL who would "co-manage" my current cancer chemotherapy, as it calls for me otherwise to go to CTCA (Cancer Treatment Centers of America) once every two weeks for several days. CTCA co-manages patients from all around the country to good effect and I had assumed that Barnes/WASH U/Siteman, which prides itself on being one of the foremost cancer centers in the world, would be cooperative and collegial. Alas, no. Instead, they have been mean, small and incompetent.

Having a referral for an oncologist there from someone in CTCA, I tried to make an appointment with her, but the facility would not have any part of that, since I had, almost a year ago, seen a different oncologist and consequently was told, even though I asked the appointment desk in oncology to confirm this astonishing statement, that I had to see him or no one else there, no exceptions. While I did not care to be treated as if I had called someone up for insurance (assigned for life a certain representative, whether he/she was competent) I ignored that and made an appointment with him.

At that time and during all follow-up, I insisted over and over again that I was not interested in transferring treatment neither solely to him nor for a second opinion, but co-treatment only and would he do that? Admittedly, I was never promised that he would, but I was certainly told that this was up to him and was a distinct possibility. He, of course, wanted all medical records from the time I saw him, almost a year ago, and so CTCA faxed him at my request all those medical records of every sort, which amounted to 75 pages, and mailed him this information as well on a CD to the address provided. I had it verified with CTCA that they had sent all of this the day it was requested, which was over a week ago, and so I made an appointment to see him and to begin co-treatment.

The office of the Barnes/WASH U/Siteman oncologist called today wanting to know where the records were, and I informed them. I asked them to double-check on their end and in an ensuing discussion I was informed that the oncologist in question did not, repeat DID NOT, co-treat, but would see me for a second opinion or as his transfer patient. Whereupon I canceled the appointment and stated that I was disappointed at the shoddy treatment and would do whatever I could to make certain my little world knew about how I had been “misinformed”, manipulated, and mistreated. If the back of the house does not have their act together, no matter how good the front of the house looks, they don’t either.

I called MO Baptist Oncology and asked if they might have someone who co-managed cancer treatment and was told most emphatically yes, in fact, many of their docs do. I have an appointment with one of them soon. CTCA will send my records to them tomorrow, and Mercy, where I was treated originally, will send them mine tomorrow too.
I fervently hope that Barnes/Wash U/Siteman bills Medicaid for an appointment that I canceled, for I would dearly love to report them for Medicare fraud. I wonder how many times they have tried to get away with that?

3/17/2019

Having had the third of six Folfox treatments, I'm halfway through this cycle, which will be followed by some sort of scan to see how well it is working. Indeed, it's powerful stuff and requires me to be on a pump for 46 hours, which is not bad, but at the end of that period, I'm exhausted. Previously, we had stayed at Cancer Treatment Centers of America (CTCA) north of Chicago for this period, which meant that, including driving up and back, the entire process of seeing doctors, taking tests, receiving the pump infusion, etc., took five days. Now, however, Betty's been taught how to disengage my port needle at home, and so the trip is much shorter, which is a blessing, i.e., we can leave right after I'm hooked up, and she unhooks me at home two days later. And, while I will find out for certain early next week, it looks like, after three failed attempts, there might be someone here locally who will "co-treat", which means that we only have to go to CTCA every four weeks. I'm still interested in what CTCA might have to offer after this next assessment but I will be grateful if we don't have to make that trip quite so often.

Being seriously ill is a strange sensation, even if my major complaints are side effects to treatment and having to travel so much. Hard not to be mindful of the situation, even though I do not want to become my disease, and we both want to have a "real life" as much as possible. For example, Betty treated one of her brothers, Mike, to the recent Monkeys concert for his birthday, while I gladly rested at home. Sure, I’m the one who’s sick, but this is hard on her too, and make no mistake. I am mindful, also, that I want to finish strong, no matter when that is, and while I am not in any hurry to leave the party, I do need to take the occasional (daily!) nap. I’m pacing myself in what would appear to be the home stretch, no matter how long that is, and Betty’s taking care of herself too.

Another observation is that, with this chemo treatment, we're not to share any body fluids during the 46-hour treatment and three days afterward, which means that we cannot even kiss one another on the lips for five of fourteen days, over a third of each treatment cycle. Remembering to be deliberate here, as opposed to remembering to be deliberate in expressing affection, results in our being more distant from one another when we have spent two decades working to be open to one another. This cannot be helped, but we are both trying to be mindful that we want to go back to who we are as soon as the calendar says we can. This is easier said than done, but that's just another challenge. It feels weird to turn on and off the affection switch.

On another subject, some of our friends here in STL have arranged for a private, by invitation only showing of "Illusions of Cyn”, the film for which I wrote the screenplay. This is an incredibly generous and kind gesture, for which we are both most grateful.

I know I use "we" often as if I could speak for Betty, which I cannot, but we are both in this together, so it’s hard not to include her in pretty much anything I write.

3/21/2019

Last week at CTCA north of Chicago, I saw one of the Oncology PA's, rather than my oncologist, who was talking about how well I am doing, not only concerning the blood work but also for various symptoms, etc., etc....until he listened to my heart…which showed an irregular heartbeat. A short version of all this is that I am to see a cardiologist here in St. Louis. I have an appointment with one Monday morning, the earliest I could get one.

An irregular heartbeat does not necessarily mean problems, but on top of an Afib episode after one of the cryotherapy procedures at CTCA, seeing someone sooner rather than later is indicated. I will know more on Monday, but everyone wants this looked at ASAP, which is further reason you jump on this. I'm still going to the gym and checking my blood pressure and heart rate every day after exercise, and it’s always good, typically 120 or less over 80 or less, with a heart rate of 90 or less, so I am not worried especially on the one hand, but, on the other, feel like another negative variable has been added to the mix.

I'm going back to Mercy here in STL, which means that I have to deal with their business office, which is operated by a bunch of idiots who like to play games with numbers at the detriment of the patient; they effectively transfer payments from bills paid to later bills sent, which messes up the accounting, when they offer refunds, which they are obliged to do. I recognize, for example, that I owe them about $2,900 (and I checked my records to verify that figure), but I first told them, after a lot of back and forth with their business office and the office of the president of their hospital (they did not like it that I corresponded with him directly…which only offered encouragement to continue that practice), that if they could not send me an "honest" bill, rather than reconstructing their movement of numbers around like a con man's shell man, they could write it off. I haven't heard from them since, but likely will again soon.

I do not quarrel with the care I've received at Mercy, except perhaps that they offer "generic" treatments that one could get pretty much anywhere, but I'm not reluctant to have a go again with their business office, and look forward to doing so. I still have that much fight in me and knowing that there are plenty of cancer patients who are just beaten down to a bloody pulp and do not have anything to spare, I feel that I have a duty to do so. The sons-a-bitches.

4/10/2019

While this might at first seem like a rant against Mercy Hospital here in STL, every utterance of which they deserve and more, this is more about "Patient Focus".

For reasons of my own I have decided to pay off the $2,888 that Mercy Hospital here in St. Louis says I owe them, but for which they have not (cannot?) sent me an honest bill explaining how they came to this figures, which approximate mine, despite my repeatedly asking for one. On-Line, therefore, I have arranged for a payment of $175 a month, which is more than the minimum amount suggested, so, frankly, I do not understand why one of their robotic minions placed a call to me asking me to return their call.

I do not wish to speak with one of their representatives under any circumstance, preferring instead to keep them at arm's length lest they will do something further to make the situation worse. Like, for example, as was done recently online, state that I owe them an additional $175 (curious that this is the same, exact amount as my monthly payment plan) for a recent visit for which it is apparent they have not billed Medicare and my Med Sup, hinting none too subtly that if I did not pay this additional “vig”, the payment plan might not be honored. Which would be OK with me, as I find fighting with them energizing.

In response to this, I wrote their CEO (and followed up by fax several days later, so that the CEO might have my letter on his desk before someone intercepted it; they do not like me communicating directly with him!), stating that I will not respond to any automated telephone calls from Customer Service; that, if someone there wishes to speak with me for whatever reason, they can call my telephone number, which they have done, and speak with me. Not call and leave a message for me to climb a telephone tree, but call until they reach me.

But again, this rant is about "Patient Focus" and not Mercy Hospital's "Customer Service", something their Business Office seems to lack.

I'm being treated for Stage Four Esophageal Adenocarcinoma at the Greater Chicago location of Cancer Treatment Centers of America (CTCA), where everything is focused on the patient, including any and all dealings with their Patient Accounts (notice how even the terminology show more patient focus!). Never have I got a telephone tree when calling, and almost always I can get through to a person the first try, some of whom, my Care Team, in particular, call me themselves to see how I am doing. No one at Mercy ever did that for me, and there was no Care Team at Mercy, at least not one that cared enough to call. Before knowing first hand that patient relations can be "high tech and high touch", I would have thought this was beyond even the best of American Medicine. There is no justifiable reason why what seems to be unique to CTCA, or at least extremely rare, cannot happen every day with every patient at every cancer treatment location or indeed every hospital. But it does not. It happens at CTCA because the founders wanted it to happen and made it happen. And their vision endures.

I do not know how this adventure will end, but I do know that as long as I am being treated here, their focus will be on my care and not on the facility or its staff. They even give us vouchers for our meals.

4/12/2019

Following my 4-10-19 Facebook posting (pasted below the close of this message for reference), I was approached by a good friend of ours who offered to post my dissatisfaction with the way that Mercy Hospital here in St Louis had handled disputed billings for over a year, by referencing the subject on her Twitter page with hashtags for those who do Social Media for the hospital. Not only is she a cabaret singer of some renown, she knows how to make things happen, for late the following morning (which is impressive, since she had posted to Twitter about 10:00 p.m. the night before!), I received a telephone call from a senior executive from Mercy who not only apologized for how I had been treated but also said that all matters addressed in the 4-10 posting had been resolved in my favor, along with another one that I didn't know about. Which speaks even more in her favor, from our conversation it's obvious that she dug into these details, rather than merely glossing them over, and all on short notice. Very impressive all the way around.

Sure, the cynic and skeptic in me suspect the motives, but as John LaCarre said several times through his brilliant character, George Smiley, "There is never a single motive." Certainly, the hospital wants to "enjoy" a good reputation, and they have every right to take steps in that direction, but, following Mr. Smiley, I find their recent efforts commendable and honorable, and I applaud them for it, as they "deserve" a good reputation for how this was handled within the past 48 hours. Furthermore, it's difficult not to accept such an amends of this nature, first by telephone and then by a follow-up e-mail; that is, they put their amends in writing! Also, while one might be tempted to gloat, I am reminded that someone once said, in a sports context, "Act like you've been there before," so there will be no End Zone Dance on my part. Just relief and gratitude that these matters have been resolved. Gratitude to our friend Katie and gratitude to the Mercy Exec, who encouraged me to go on their patient portal web site this morning to make certain this had all been resolved, as she said it would be. I did and it has been. She looked into things thoroughly and then got things done; she accomplished something in only a few hours, something I had been trying to do for over a year. Yeah, she’s got the juice, but she also took the action, too.

As an aside and curiously enough, I received yesterday's telephone call late that morning while sitting in the Infusion Lab at CTCS where I had just begun a four-hour infusion, before being hooked up for an additional 46 hours. This includes Benadryl and steroids, a standard of care, so I was already on an emotional roller coaster ride when the Mercy Exec telephoned.

Consequently, it might have been my imagination which told me that she said as soon as I answered the telephone, "I am calling on behalf of Marcy Hospital, but please don't hang up!" Or maybe that truly happened.

Also, for those who are interested in this level of detail, the chemotherapy I'm currently on is called Folfox, which includes among the ingredients in this cocktail, something called 5FU, which is a great name, standing for “Cancer, FU five ways!”

In a month or so, I’ll get some more testing to see if this actually works for me and also how the primary tumor in my esophagus is behaving itself. So far, anyway, I'm handling the side effects well, but am pretty wiped out and spacy during the 2-day infusion and for a day or so after. Betty's been taught how to remove the port needle and dispose of the needle (sharps container) and treatment remains (tubing and empty lines), so at least we are home for my fortnightly convalescing. I drive about halfway on the way up for this six-hour trip but am in no condition to do much driving on the way back, so most of the driving each time falls on Betty, who is not only The Babe but also The Champ.

5/13/2019

We're back from CTCA with some good news. The CT scan showed the absence of, or the reduction of, various suspicious bits, and the Endoscopy, followed by cryotherapy for the top third of the esophagus, went without complication or incident, which is promising, so I should be able to swallow without difficulty for some while yet. I am to continue with the Folfox (which contains a chemotherapy called Five FU, which is just a great name!) for another round of six treatments, one every two weeks, to be followed by another scan, and then another endoscopy in two months, with this visit to be coordinated with my oncologist.

I'm losing my oncologist, as his wife has a medical residency in Atlanta, so he is moving on. His replacement has already been determined, and I will meet her in early June. He speaks highly of her, and the vetting process there at CTCA, with their patient-focused approach, suggests that she will know her stuff, as he does, and be a good fit. Being a good fit with their overall philosophy is important there. Even the woman who works in the nail salon had a half dozen interviews before she was offered the job.

Strangely, I'm disturbed with the good news, however, in that the Endo guy suggested that I might not be Stage IV now. While recognizing that I am what I am, like Popeye, I like the idea of being obliged to live on the edge, which causes me to look at the world in a certain sort of way. Even so, I am reminded of what the first oncologist said over a year and a half ago, which was that the kind of cancer I have, is hard to treat and likes to come back, so it does not matter how they stage it, and giving me a lower number does not mean that I will have a longer life. I am grateful for the good news, but no one is talking cure or remission, so it means very little. I will continue to consider myself as someone living on the edge.

5/15/2019

This morning, when I was telling some folks about my recent good news in the ongoing Great Cancer Adventure, one of them remarked (trying to bait me perhaps) that this is because I live in the USA which has the very best medical care in the world.

I didn't think until well after this encounter that this is true in my case primarily because I have Medicare (and a Medicare Supplement as well as Drug coverage, which I can afford while so many of us cannot let's be frank) and consequently don't have to make difficult, life-and-death-decisions about my health every day and sometimes every hour. And a system that does not deliver for everyone simply does not deliver.

We’ve been through a lot, Betty, the kids, and me. Nevertheless, albeit, broken and badly beaten down, I’m still here after almost two years, and I'm not ready to quit, at least not today. Eventually, I'll have to leave the party, I know, as everyone must, and while I won't say I will never surrender to the seemingly inevitable, I'm just not ready to do so yet. So, for now, I'll play this out until the very last moment, until the very last breath, no matter when that occurs. We'll see about later on when it gets here.

The name of this piece, The Great Cancer Adventure, comes from a photo their mother, Paulette, took of Elizabeth, Peter and me when they were young. Elizabeth’s skipping through the grass by my side, holding a doll, and Peter’s being carried on my back, enjoying the ride. I’m shown pushing up my glasses, about to pivot and move us all out of frame. Betty was the one who, when she first saw this photo, said it looks like we were off on a great adventure. She’s joined us, and we are.

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