5/9/2018

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 the 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 about a 10-14 day 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. 

We’ve met with the oncologist and both surgeons, 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 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 do not have an appointment with a second opinion general surgeon and need to find out if this seems indicted.  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.  That 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, that 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 regiment would be an IV treatment once every two weeks for a couple of months), but which does not offer a cure.  Yes, indeed miracles happen, and one should be sufficiently optimistic to expect miracles, but one cannot count on them.

Since no decision is also a decision, I’m setting a deadline (curious choice of words, that!) of the end of the month at the latest, and perhaps by this time next week.

It’s important for me not to keep secrets.  Right now, at any rate, I am still in the race and expect to continue up to and perhaps beyond August 7th, the date of the Primaries.  Certainly, I hope that those of you who are still with me up to this point, will continue to be with me, but I would understand if you feel it necessary look to other candidates. 

As long as they are Democrats!    

1/23/2018

After sessions of physical therapy, from someone who not only was schooled in orthopedic PT but also oncological PT, and work on my own, the orthopod let me out of the brace, though he did suggest I still sleep with it at night to help ensure that 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 Pet Scan originally scheduled weeks and weeks ago for this past Tuesday was re-scheduled for this morning (insurance snafu), and so I do not meet with the oncologist until just 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 doc the test showed, “minimum residual disease”, which is welcome news indeed and about as good as it gets.

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 that. 

After a rough few months, we’ve had a couple of weeks of very welcome, good 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. 

Got some good news on Tuesday from the orthopedic surgeon in that I do not any longer need to wear the hip brace (dislocated artificial hip, exacerbated by chemotherapy) during the day, after having been in it for a little over six weeks. I 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 are not far behind.  Follow up with that doctor is in three months.

Also, met with the radiation oncologist Wednesday morning and so far anyway no residual effects from the radiation that 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! 
 

12/13/2017

The film was just great.  Everyone involved did a great job, and it was wonderful to see them again, some for only a very few moments, and others, such as June Griffin Garcia, who plays the lead character, for a little longer than that.

On the way home, however, and just when it looked like there might be some respite, while boarding the airplane, I dislocated my artificial right hip.  After two unsuccessful attempts while in the ER, the orthopedic surgeon there was able to put it back into place; put me in a hip brace, which I am to wear for 6-12 weeks; and sent me on my way back home to St. Louis.  

Back in STL, I met with my orthopedic surgeon the very next day and, while he might have mentioned that I was less than prudent when it came to hip precautions, he did indicated that among the side effects of cancer chemotherapy was changes to connective tissue, which might have caused or at least exacerbated the hip dislocation.   With that in mind, he informed me that I simply must make this re-location work, as surgery, at least in the short term, is simply not an option. 

I’m on a walker now, with a tripod cane on order.
 

11/21/2017

Here in the hospital via the ER at the suggestion of the oncology nurse, due to bowel concerns. Tests done & after two bags of fluids (for low sodium) and a BM, we’ll be on our way home tomorrow. Indelicate yes perhaps but all a part of the treatment and its effects.

As noted previously, I finished 28 Radiation sessions on Friday 11/10 and six Chemo sessions (this round, anyway) on Wednesday 11/8, and have now had two weeks in which to recovery, which frankly has been the most difficult part; again, Betty and I are so very grateful that we were warned this is a grind and that treatment continues to wear even after it’s completed. 

Much of these last two weeks has been spent in managing side effects, of which, according to the American Cancer Society, there are 18 for Chemo, and I’ve had the vast majority of them. Spent a day or so in the hospital last week, for example, but apparently I am moving forward at least to some considerable extent, although I’m incredibly weak, having lost some twenty pounds. My appetite is returning, which is a good sign, and my digestive system is more or less back to where it had been before all this started. Even when I am back to my old self, all that means is that I survived treatment. It does not mean that treatment worked. Having been warned that the kind of cancer I have is difficult to treat, I’m fully expecting that there will be a second round of something, but that’s to be determined in mid-January after more testing. Outcomes are out of my hand, but means is up to me, and I must do my part to get as strong as possible for the next round, should there be one. 

My great good thanks to my immediate family, namely Betty of course, who has been with me very step of the way; Elizabeth, Sam & Ramona; and Peter & Nicole, along with brother-in-law Mike O’Dea, who’s kept in close touch and who invited us for Thanksgiving Breakfast at Uncle Bill’s Pancake House & Diner, and many, many others. 

In a couple of weeks or so, Betty and I are headed to Houston for a Cast/Crew showing of “Illusions of Cyn”, the script for which I wrote. There, we’ll meet up with Elizabeth, Peter, and our friend Steve, along with the cast of the film and many of those working on it, whom Betty and I had met before. These are all independent film people, mostly from Houston, and the director seems happy with the results, so I am really, really looking forward to this. 

Life goes on. The adventure continues.
 

11/9/2017

My last Chemo was Wednesday, at least for this round, and my last Radiation is scheduled for tomorrow, and apparently no matter what’s next, Radiation has run its course, which is OK with me. The infusion center has this bell that we’re encouraged to ring once Chemo is completed, and I rang it then. All the nurses came around and gave me a round of applause, which was a nice gesture not only for my benefit but also for the benefit of those in chairs, wondering what the future had in store for them. I thought about not doing this, because it’s loud, and many of the other cancer patients were sleeping, but my nurse encouraged me to ring the bell. I was back there today and am scheduled for tomorrow as well for a Blood Cell booster shot, but was told today that I did not cheat, because Chemo is indeed over. 

This past Tuesday evening, I received a telephone call from the office of the GI Surgeon, saying that my biopsy results came back negative. For a second, I had a Twilight Zone moment, but then realized that this was a courtesy call, coming a bit late perhaps, to let me know that the colonoscopy results were negative, something I had already known, but appreciated the call nevertheless. Still, a little weird. 

Of the people to whom I am most closely related by blood (two parents, four grandparents, four siblings), I would not have said that cancer runs in my family. This is not to discount my maternal grandmother, who developed breast cancer late in life, nor one of my sisters who’s had three brushes with cancer, but instead to note, by way of contrast, that what really runs in my family is heart disease. My maternal grandfather succumbed to that, as did my father among many other ailments. My mother has heart disease of one sort or another, and so does one of my brothers, and I have high blood pressure, which fortunately is under control through diet, exercise and medication. All of which is to say, that when asked “does cancer run in your family?” I answered no, with the provisos noted above. My children, however, will have a different response. This is not what I had most intended to pass along to them, but there it is. 

I look forward to my appetite and energy level returning which cannot come too soon for me. My mouth and throat seems lined with dust, a common sensation I’m told from the radiation, and very little is appetizing. Boost is not only something I can tolerate, it actually tastes good. 

A friend brought us dinner last night (Bison burgers, mashed potatoes and some home-made healthy salad), none of which was on my plate for long, so there does seem to be a light at the end of this tunnel. I also hope to return to the gym in a week or so, something I’ve missed as well, and that’s not like me either. I am coming back, though, as I seem to feel my strength returning. All of which leads me to wonder if indeed I didn’t have some sort of bug just when treatment began, as I am in the very toughest stretch, but actually feel better, for minutes and sometimes hours at a time, than I have for some good while. Or maybe it’s really nothing more than seeing the finish line, for this particular race anyway. 

Next steps, after tomorrow, are 1.) Labs and Oncologist on Friday the 17th, to see if an additional Blood Cell Booster is indicated and also to schedule testing in two months and 2.) Radiation Oncologist follow up on Wednesday the 22nd, to make certain I am swallowing OK, just in case; both Radiation and Chemo are still working after treatment ends, which means that side effects are still possible for a while yet, too. Oh goodie! 

This has been a difficult journey to date, and it’s not over yet, as there may need to be a second round of something, but we’ll know more in a couple of months, after that testing. In the meantime, I apparently need to make arrangements to have my port flushed ever four-six weeks, to make certain it works since the plan is to keep that in my chest and neck for two years. Coming full circle, the Oncologist said that if I make the two-year mark, prognosis is good for five or more, and that’s the intermediate goal for now. Two-years. Better than the alternative, which again is 6-12 months. 

This uncertainty might change some retirement plans, such as travel with Betty and the kids, but I think I can adjust. Priorities change.
 

11/4/2017

Today, I was discharged by the radiation oncologist, who I see on Mondays, even though I still have four more treatments scheduled. I have a follow up appointment in two weeks, just to make certain that my body has begun to adjust from the 28 radiation treatments. My last chemo is this Wednesday, and already I’ve been told by that oncologist that I’ll see him in a couple of months for more tests and then, if indicated, next steps. Indeed, that this was discovered so early, would suggest a happy outcome, but not only were we warned that treatment is a grind, we were also warned that far more often than not, a second round is indicated, because this cancer, adeno cancer of the esophagus, is especially difficult to treat. (My urologist was looking for something that wasn’t there, but noticed something suspicious elsewhere; I was able to get an endoscopy done within a few days, as I already had a routine colonoscopy scheduled the next week, which also was benign, thus shaving off a month or so.) 

In referring to the American Cancer Society’s list of common chemo side effects, of which there are 18, I’ve experienced the vast majority of them, the latest being held captive by my digestive system over the weekend. It’s a relief to see diarrhea listed a common side-effect; to know that this can be ameliorated with a common over-the-counter medication; and to realize that “tourista” comes along on the Great Cancer Adventure. I really do not have much appetite (another side effect) and haven’t had much for a couple of weeks or so. Fortunately, I do not mind at all the taste of Boost and consume a couple of these a day. I have no taste for vegetables, fruit, sweets, coffee (which is astounding, for as much as I enjoy coffee) or much of anything else, but I’m still interested in meat, such as bacon and pork steaks. 

Also, I wonder if I’m still feeling the lingering effects of some sort of bug that doesn’t have anything to do with cancer, for, even though I am in the final days of chemo/radiation, the toughest part, I feel a little better than I have in a while. For brief periods of time, anyway.
 

11/3/2017

Betty and I met yesterday with the Oncologist who is managing the various elements of my Chemo (his bailiwick) and Radiation and everything else involved. Since I have been coughing a lot (apparently there is such a thing as Radiation Cough), he ordered a chest x-ray, I thought to double check to make certain I did not have pneumonia (which I’ve had on occasion), but really to make certain that the esophageal cancer had not spread to my lungs; it had not, so that news is good, and no pneumonia either, which is also good. Having had 5 of 6 prescribed Chemo Treatments, and 22 of the 28 prescribed 28 Radiation Treatments, I am at once in the home stretch and also heading into the very toughest part of this regiment, as the last week or so can be especially tough; once again, I am so very grateful that we had been warned that this would be a grind. Sort of like in a marathon (of which I have run/walked 6 to Betty’s 47, but who’s counting, right?!?) when you hit the wall. It’s Left/Right/Left until you grind through those last several miles. 

Apparently, the Chemo is meant to boost the Radiation, which does a number of the sternum, a prime location for the production of blood cells, and my WBC, RBC and Platelet counts are all low, and thus I got a WBC booster shot this morning with another one scheduled for tomorrow. Just before the Infusion Nurse pushed in the needle, she said this would make my bones ache. Ah, something else to look forward to!!!
 

10/26/2017

Except for the time that Betty and I climbed Mt. Kilimanjaro, where altitude diminished my appetite, no one has ever told me that I should eat more. Until now. Now, thanks to Cancer Treatment, I am officially on a High Protein/High Calorie diet, after having lost ten pounds in only a couple of weeks. I am able to swallow with relative ease, as these things go, so that’s not the problem, but I’m hardly ever actually hungry. After having been introduced to “Boost” which actually does taste like a milk shake, more or less, my appetite has returned at least to some extent.

As of yesterday, I have received four of the six Chemo Treatment and as of this morning, 17 of the 28 scheduled Radiation Treatments. My oncologist says I am doing well, which is of course good news. This is indeed a grind, as we have been warned it would be, and I am so glad, for while today I have more energy than in a while, this does wear you out. I typically take an afternoon nap, if possible, even if only for a few minutes at my desk here at work (where I am “officially” on break during that time) and typically go to bed around 7/8 p.m. and frankly, sometimes, before then. Both Betty and I think it’s important for couples to go to bed together, but that’s way too early for her (under other circumstances it would be too early for me, too!), so she tucks me in and then joins me a little later. I’m still up at 5:00 a.m., though, to begin my day and have kept up with my daily activities, including light workouts at the gym three days a week, but all lower limb and all low and slow. 

After this course of treatment is done (11/10), I’ll have some more tests in mid-January, and then, because this one is difficult to treat, the fun, in whatever form that presents itself, will likely begin again.
 

Wedding Anniversary

Yesterday was Chemo Treatment # 3 of 6, and today's Radiation Treatment was #12 of 28, so I am, more or less, half way through this. Prior to Chemo yesterday, Betty and I (and she's with me every step of the way!) met with the oncologist, who is "the quarterback of the team", and he said that I am doing very well. That's encouraging of course, but he's referring to my tolerating the treatment and not having too many side effects, but this does not address the outcomes, which is of course the crux of the matter: is this working?

About ten weeks or so after the end of this treatment regiment, they'll do some more testing to see what has/not been accomplished and then, if necessary (and apparently it is necessary more often than not), determine next steps. Surgery is out, as far as I am concerned and it has NOT been recommended, as the procedure itself is life-changing and offers essentially no benefit, so why would I opt for that? Radiation is out as well, since I will have had my 28 treatments. There are more Chemo options, and we'll cross that bridge when we come to it, if necessary. 

I'm managing my expectations and pacing myself, while doing what I can to live my normal life. For example, I have gone back to the gym three times a week, but only doing lower body and that low and slow. I have a port in my upper chest with tubing into my neck, so I will need to be mindful of that before doing any strenuous upper body workouts; the port is usually kept, I'm told, a couple of years, which I can handle. Again, I'm doing everything I can to have a happy outcome and leaving the outcome to Divine Providence.

I’m still in awe with the team approach at Mercy Hospital here in STL, but there are so many links in the chain that weak ones stand out, especially when there is so much excellence elsewhere. One of the young women in the lab (I have blood work done weekly) yesterday called me "Dear", so I called her "Sweetheart", which she didn't much care for, but maybe she'll think twice before condescending. Sure, likely there are many of her patients who might welcome such informal address, but Baby Cakes, I am not one of them.

Also, just to make certain, we had a second opinion appointment at Sitemann Cancer Center, and the oncologist there said that they would suggest the same treatment, and good on Mercy for having found this so quickly.
 

10/3/2017 - 10/6/2017

Back from having a port installed in my chest to make the chemo go more smoothly. A little sore but that’s to be expected I’m told. I can handle the discomfort no matter how much there is as long as everything is as it should be. Chemo, which is once a week, and radiation, which is every weekday, begins tomorrow.

I just completed my first week of treatment.  Chemo and Radiation began Wednesday, with Chemo being Wednesdays and Radiation being every week day. I'm dragging from lack of sleep, I think, but should be able to recover over the weekend. I can only imagine at this rate what I'll feel like next Friday, but we'll see. No one said this would be easy, and in fact everyone we've talked to talked about how difficult this would be, so we've been forewarned. Still have great confidence that I am in good treatment hands, and Betty of course is The Champ.
 

9/20/2017

Elizabeth, Sam, Ramona, Peter & Nicole are all scheduled to arrive this afternoon/evening, and they are staying until Monday afternoon/evening. During that time, I have an MRI scheduled for tomorrow morning and an appointment with the Radiology Oncologist at noon. Nothing on Friday or Monday, but on Tuesday I have an appointment with the Oncologist managing my case in the morning and an appointment with the Cardiologist at noon. I'm in contact with the Nurse Navigators at the Mercy Hospital, my Cancer Sponsors, who can answer some of my questions in general.

9/18/2017

Here’s the executive summary from our appointment today with the oncologist. 1.) The news is even worse that we thought, in that I have Stage 3B Cancer. I have cancer in my esophagus, where it leads into the stomach, some cancerous lymph nodes and perhaps some cancerous cells in my liver. 2.) They want to do an MRI and an Endoscopy Ultra Sound EUS) to determine if there is cancer in the liver; if there is, then this complicates the preliminary treatment plan. 3.) The preliminary treatment plan is that I will receive chemo once a week and radiation once a day for about six weeks, beginning ASAP, which means by around the first of October as a practical matter. There will be testing all through this period to ascertain whatever supplemental treatment is indicated, if any, and to gauge my progress. 4.) I’m scheduled with four different doctors ASAP in addition to the oncologist, i.e., a cardiologist, a GI doc to do the EUS, a radiology oncologist, and another one for a stint, which I will need for the chemo. 5.) The oncologist is impressed that I can still swallow and suggest that there might be a time when I might not be able to eat solid food and in fact I might even need a feeding tube, since the radiation will effectively be burning away the cancer inside my esophagus. 6.) The whole process will take 6 weeks or so, assuming it works, and if it does then I have a better than average chance of living five years or so, but make no mistake almost certainly this will shorten my life span. And if it does not work, then I should have six months to a year. 7.) It looks like I will be able to see the kids (grown now, with families of their own) prior to the beginning of chemo, and Betty and I will make a trip down to see my mother by then as well. The initial GI doc warned us that we were in for a rough road over the next few weeks and months, and so it would seem the more we get into the details, the more this is born out. 8.) Diet soda and anything else with bubbles is out, but I can still have coffee, so the news isn’t all bad

We’re off on a new adventure!

We’re off on a new adventure!

As a result of routine health maintenance, I’ve recently discovered that I have Adeno Carcinoma. This kind of cancer is apparently on the rise among Caucasians of my age, plus or minus, and while this is not good news, it looks like it was detected early, really by accident. My urologist wanted to rule out a kidney problem, and so he ordered a CT Scan that showed nothing there, but they also looked at my upper GI since they were already in the neighborhood and saw an "abnormality". I already had a colonoscopy scheduled a week later, and my GI Doc agreed to scope me on both ends, and there we are. BTW, the urologist also took a look inside my bladder, looking for anything suspicious, but there's nothing suspicious in either the kidney or the bladder. I had only relatively minor symptoms. Oh yes, I have a small hiatal hernia, which might have been causing the occasional heartburn, and burping, etc. which started a month or so ago, but nothing more, really, than that. 

I have a Pet Scan (sounds like the title of a Beach Boys album, doesn’t it?) tomorrow morning, which will determine next steps, and we’ll (my wife, Betty O’Dea, is with me in this journey, along with other family and friends) have an appointment Monday morning to discuss options. If it's isolated, as it looks like it might be, then surgery is indicated along perhaps with chemo and radiation, depending; however, if the P/S shows that it's in my liver and/or lungs, which cannot be good news, then surgery is no longer an option, and we're back to radiation and chemo. A thoracic esophageal surgeon is waiting in the wings, if surgery is indicated. We should know the action plan within the next few days, but no matter what’s indicated, the GI doc told us to expect a rough couple of months.