Recent Developments -- This Page Published on Monday, July 11, 2004 

Swallowing Test

Blocked Feeding Tube

Karl Note:  You might guess that I am a very keen observer as to whatever happens to and with Bonnie.  This may be far more detail than you are interested in, but I publish it here because, first, I wanted to write the letters I did write, below.

Next, I feel some need to record my observations because someone else may benefit, and I may, someday, want to revisit these events for details maybe then forgotten.

I have placed some further "conclusions" here.

Karl

1831 North Bel Aire Drive

Burbank, California  91504

 (818) 558-1799

FAX (818) 558-7299

July 8, 2004

Re:  Bonnie J. Troescher

Dr. Benowitcz, 

Dear Irwin 

I’m looking forward to this office visit, and want to present some thoughts that might lead to Bonnie being relieved from some considerable discomfort.

Bonnie is not able to swallow even a tiny bit of her own saliva, or any water.  The pain she had when she entered Hospice seems all gone – although that may be the result of the drug patches she is wearing.

The swallowing problem is not much different from what it was several weeks ago (although the gagging has disappeared --- perhaps because of the ear patch), but then the radiation doctor was saying that it was “normal” to develop these swallowing problems because of radiation and that they would go away for sure, in about two weeks after treatment stopped – that Bonnie would be easily able to eat after about three weeks following the end of treatment.

Bonnie accepted this prognosis as a necessary adjunct to the curative effort with radiation. Bonnie was off both chemo and radiation for more than three weeks when the swallowing problem was still there.   After another week or soo “off radiation and chemo) both the radiation doctor and the oncologist, separately, sent her for several tests to determine the possible cause. Bonnie was still hopeful that this problem would be handled.

Neither the tests ordered by the radiation doctor, nor by the Oncologist, provided any insight of cause.  One doctor at the hospital “guessed” that the pain Bonnie was experiencing (for which they also could find no explanation) might be caused by a infection and prescribed an antibiotic.  But, no one had any clue as to the reason for the swallowing problem.  One of the tests, a CAT scan, showed “at least a 30% shrinkage” in the cancer, so it would appear that a “growing cancer” could not be the cause of blockage that would cause swallowing problems.

Bonnie entered the Hospice when her last hope for cure, even for palliative care, was dashed by the surgeon who told her that she was not a candidate for removal of the mass, that if he did do it, it would be an 11 hour surgery, then 30 days in ICU and would result in only a 5% chance of survival. 

The pain she had did not diminish during the course of her 10 days on the antibiotic, but did reduce and go away when the Hospice-supplied pain control was used.  Since Bonnie has been on those pain patches all during this time we don’t know if the original pain is gone, or being handled by the drug.  I suspect that the pain is no longer there – that is Bonnie’s sense of it.

Now that the swallowing problem is no longer a part of normal recovery from radiation, it becomes a different type of discomfort.  The discomfort may have been acceptable when it was predicted as a part of a “curative treatment” but when the discomfort extends well beyond any predicted period of curative treatment there seems need of some palliative handling.

Clearly the disease which brought Bonnie to the Hospice was cancer.  It seems unlikely that cancer is the direct cause of the swallowing problem, and even if the cancer is part of the reason, the Hospice purpose would seem to cover whatever palliative treatment of the swallowing problem might be effective.

Even though the radiation doctor never mentioned it, I found in just a few minutes search on the web many references to the fact that cancer treatment often includes radiation-caused scar tissue.  One of these references was on the web of the National Cancer Institute.  The mechanics of how scar tissue could be formed in the case of esophagus cancer are well covered on the web, I found.  I also found references to handling such a swallowing problem, including endoscopy (presumably following tests such as CAT or PET), laproscopy and even surgery.

My opinion is that Bonnie’s current largest problem is likely caused by something which the regular team of cancer care doctors hardly checked at all.  She is now proclaiming that she is not willing to continue living with the discomfort of the swallowing problem, and no hope for relief.

I remarked to the Hospice nurse during a visit that it was “OK” if Bonnie died of cancer and she was prepared for that cause of death. But, it didn’t seem “right” that she should die because of complications of the treatment, including what might be complications of poor treatment.  In particular I think the surgeon probably exaggerated the dangers of his surgery because he just didn’t want to do it.

Dr. Arzoo, oncologist, as much as came to a similar conclusion when he implied that Dr. Renner (surgeon) was not giving a good opinion and that we should get a second opinion.  His idea of a “second opinion,” however, was tied to Bonnie agreeing to “take a rest, recover, and return for more chemo and radiation in a couple weeks, or a month.”

Bonnie has firmly decided she would rather die than have any more chemo or radiation.

Bonnie has now seen a chiropractor for three treatments to give her palliative care.  Dr. Michael Pangelinan, DC, had several years doing research at the National Cancer Institute before he decided to become a chiropractor.  He has specifically declined to predict that his treatments could lead to any change in the swallowing problem, and certainly not any effect on any underlying cancer.

He and the Medical Director at his clinic, however, were very strong on urging us to get a “second opinion” on the swallowing problem, and to seek the initial consultation services of Dr. Minana Dolebal, (?) at UCLA.

From my own research on the web it would seem to me that the following services should lead to the palliative, not curative, treatment that could relieve the discomfort from Bonnie’s not being able to swallow.

·        The “percentage of shrinkage” of the mass has always been described to us as important.  The most recent CAT scan was not done at the same facility as the one before and we only learned afterwords that no accurate comparison could be done because of two different CAT scan facilities.  The only description we got was “more than 30% shrinkage” when the oncologist told us at the beginning that a “50% shrinkage” was hoped for.  If the real shrinkage is 50% or more, perhaps the surgeon would have had a different prognosis?  Perhaps anyone who is going to want to suggest palliative treatment for the swallowing would need this type of information?  In any event, another CAT scan may well be appropriate, done at the same facility as the one when the cancer had not yet been treated.

·        A PET scan may be necessary to assure that some part of whatever may be obstructing is not cancer.  I’ve learned on the web that a PET scan can easily differentiate between scar tissue and cancer.

·        Possibly Endoscopy – Bonnie was not very happy with the two different doctors who did the others.  Either a balloon, or a stent, or some other mechanical procedure may open the esophagus and relieve the swallowing.

·        Possibly Laproscopy – Bonnie would not accept the doctor who did the last one.  I’ve read of conflicting reports on the value of using surgery to remove scar tissue, but some accounts suggest that laproscopy could be used to remove scar tissue and allow swallowing.

·        Possibly surgery (palliative, not curative) but obviously by a different doctor than already told Bonnie the grim news.

We would like to get help from the Hospice to pursue this, but I am ready to pay privately for a consultation with the doctor at UCLA if this cannot be covered by either Hospice or Lakeside.

I thank Tisha at Hospice very much for getting the approval for the removal of the Porta Cat, and point out that it might be possible to combine some or all of the possible palliative tests or procedures under one doctor, or place.

Sincerely,

Loren C. Troescher

1831 North Bel Aire Drive

Burbank, California  91504

July 11, 2004

11:00 AM

Re:  Bonnie J. Troescher

Urgent

Tisha and Lisa

Hospice Cheer

Dear Tisha, and Lisa

Bonnie’s feeding tube has presented a blockage so that at this moment she is unable to receive either water or food through the J Tube despite several different attempts to handle the situation.

It is important to me that I provide you with full written details so that everything that has happened can be taken into account in the needed handling.

Background:

Bonnie woke up at about 1:30 AM, Sunday morning, as she often does.  The food feeding had been working OK since a sleeping pill and sleep at about 10 PM.  She set the pump to 70 ml per hour – 10 ml more than she had used for some days, but still under the 80 ml she had used some weeks ago.

Bonnie had noticed that the formula had seemed more thick in the tube, and in the bag, than ever before, but that did not seem to stop the flow.  We continue to have problems with the non-standard “connector” for the J Tube, accumulating caked formula – it cleans out fairly easily with a cotton swab, but we must do this after every usage for food.

She went back to sleep and woke at about 3:30 AM, no apparent trouble with the feeding tube.  As we do every night we both went out on our patio to sit and talk.  That time was about one hour – with Bonnie off the tube.  At about 4:30 AM I did a “push” (2 ounces) of the same stuff I do every time.  I detected no particular resistance to that push.  She then went back on the food feeding tube.  We both went back to sleep. 

She woke at about 7:15 AM because the pump was beeping – generally meaning an “occlusion.”  It was the same feeding tube, with the same contents that she had started with the night before – our normal procedure.

We did not think of that as serious and did not look to resolve that then.  Bonnie stayed off the tube, then, for some time while we did some morning stuff. 

But, at about 8 AM I decided to change the bag and put a new clean bag of formula in place.  I noticed that the old bag did not empty as has always otherwise been the case. There were traces of the strawberry colored formula in the bag.  They did not appear coagulated, but they did not “rinse” out with my normal “washing of the bag” preparatory to discard.  Those traces DID disappear when I filled the bag with hot water and manually massaged the bag, at the point of “trace” to move it.  Those traces moved easily enough – I did not think of “coagulation” as a descriptor, but only “thick.”

The only thing I can think of that was different is that I normally add distilled water to the formula – as the instructions suggest.  But, Saturday afternoon when I was adding two cans of formula, I used tap water to add to the bag – I don’t recall ever using tap water before, although at St. Joes they told me that, “tap water is fine.”  I used tap water there for lack of any distilled water.

Bonnie decided to go on the water tube and we hooked up the same tube and contents that had been working the evening before.  She set the pump at 70 ml per hour.  Within a short time it started beeping and the “cone” pushed out of the connector – generally meaning enough “back pressure” to push the cone out of that connector.

I then started various handlings.

Handlings:

The first effort was to repeat the water feeding, just making sure the buffer was working, no kinks, and the normal stuff.

No flow.  I could see strawberry colored material in the end of the J Tube, and in the tubing itself. I then got a straightened bobby pin and scraped inside the J Tube and tube.  The material there was easy to push inward, but it did not “break up.”  It pushed in fairly easily.  I continued this as far as the bobby pin would reach – almost to the entry site.

This clearing did not change the flow result.

I then got the buffer out of the pump and applied the manual priming action while the tube was connected to the J Tube.  This gives much more pressure on the contents in the tube than the pump – thinking to dislodge whatever might be obstructing the tube.  That attempt caused the cone to pop out quickly.  I then held the cone in, very firmly, and primed the tube.  No flow, and I could observe either the contents, or a bubble, as it “pushed into the tube” and then “bounced back.”  It was clear that my priming action (which met strong resistance) was pushing something in, a bit, but then it pushed right back out.

I then tried a push of flat Coke Cola – thinking that this might dissolve some of the food blocking the tube.  That push would not go in.  It either leaked or popped out, or would not push with a fairly strong pressure.

We tried setting the pump at a low drip rate – thinking this might allow water to seep in, slowly, and dissolve the blockage – no flow.

Finally a nurse friend suggested we “palpitate” the area around the J Tube site, and near.  She said that the end of the tubing might have lodged against the wall of the intestine so that nothing could get out of the end of that tube.  She suggested “firm” palpitation.  Bonnie did that, then back on the water tube, with 30 ml pump setting. In a short time the pump beeped and the cone popped out of the J Tube.

We resolved to call the Hospice line and ask for a FAX number to send this report.

More Thoughts

This J Tube was inserted by Dr. Renner.  Bonnie is unwilling to have Dr. Renner give her any service for reasons already reported, but repeated here:

·        The J Tube was installed with a non-standard fitting.  We found that out early on, tried to get replacement parts and have not yet been able to get such.  When we met with Dr. Renner and suggested this was a non-standard J Tube, he got angry and denied that.  He insisted in that denial.  He said it was standard at St. Joes.  He even went so far as to have his nurse call St. Joes to get proof of this.  The nurse came back into report that what he had used was available ONLY in the operating room, never for a “replacement part” to use if needed.  They would not give him or us any replacement parts.  He then promised to “swipe” a set and give it to us.  He never did that. Even the Hospice staff have tried to get an extra connector and tip and not been able to get those.  The danger here is that if the connector gets dropped in the toilet, or becomes unusable, we have nothing to put in its place.  The obvious danger is that, suddenly, Bonnie could be without any method of taking food or water into her body.

·        Dr. Renner is the same surgeon who inserted the Porta Cat.  When the Oncologist first tried to use the Porta Cat he was not able to draw blood through it – which, apparently, they usually do.  This suggested that the Porta Cat might not be properly positioned.  They sent Bonnie for an X-Ray to picture the positioning of the Porta Cat tube. The X-Ray report I heard was that the end of the tube was in the proper position, but that there were “coils” of unnecessary tubing in place – possibly clogged and not allowing the drawing of blood despite heparin flush attempts.  The Oncologist determined that it would be safe to try delivering drugs through that Porta Cat, and did so successfully.  Thus, this Porta Cat was not inserted standardly.

·        When we mentioned this to Dr. Renner, much later, his only comment was, “Well it’s working for your drugs.”  I thought that was callous.

·        This same surgeon, Dr. Renner, before any cancer treatment was started told Bonnie and me (I recall clearly) that it is sometimes possible to do surgery BEFORE chemo and radiation, and sometimes after – depends on reports such as a CAT scan.  Later he denied saying this.

·        After Bonnie had reached the end of her willingness to receive any further chemo or radiation, and the Oncologist’s only suggestion was to “take a month, recover, and come back for more chemo” we went to see Dr. Renner to ask about surgery now.  We had understood that surgery could be done, at the discretion of the surgeon, if the standard treatment resulted in about a 50% shrinkage.  The CAT scan was not done at a facility that would allow for an accurate measure of shrinkage, but the Oncologist reported that there was shrinkage of at least 30%.  Bonnie had hope that the surgeon would be willing to do the surgery.  (She would still be willing to have that surgery now – but not from Dr. Renner and no more chemo or radiation.)

·        When we met with Dr. Renner, his first comment was something like, “you are not a candidate for surgery.”  I think this was a wrong opinion, and the Oncologist later even suggested we get a second opinion.

·        Dr. Renner’s next comment was that, “If I do the surgery, it would be 11 hours, very complicated. Then Bonnie would have to spend 30 days in ICU and would have a 5% chance of survival.”  I now think this was a medically unsound opinion – which Dr. Renner just didn’t want to face that type of surgery and wanted to discourage Bonnie.  I suspect it also false information.  It was the information that made Bonnie give up hope.  I think this one claim by Dr. Renner should open him up to discipline by some proper authority.

·        Finally, Dr. Renner told us, in that meeting, that it was NOT up to him as to whether or not to do surgery – but up to the Oncologist. This was directly contrary to what he had told us a few months earlier and certainly contrary to what seems logical to me.  Surly only the surgeon, himself, can decide as to whether surgery is called for.

·        It may be unfair, but Dr. Quilici had been the Oncologist’s first choice of surgeon, but Dr. Quilici turned out to be very arrogant, refused to even keep our family physician “in the information loop” and dismissed Bonnie as a patient when I requested that we be given a day, at least, to consult our family physician before he did a surgical procedure in the office, with no prior notice to us.  The Oncologist, Dr. Arzoo, told me several times that I was very wrong for complaining about Dr. Quilici, that he was the “best” surgeon.  Dr. Arzoo implied that I might be responsible for Bonnie’s death because the only other surgeon, Dr. Renner, was so inferior.

·        I have renounced my right to sue for mal-practice, and hold to that position.  But, I do not renounce my right to make a formal written complaint.  I think Dr. Renner is not a suitable person to have anything further to do with Bonnie’s care, specifically including any possible surgical or other handling for the current J Tube problem.  I think he should be told this.

I am going to call the Hospice, ask for a FAX number and then FAX this report in today, Sunday, about 11 AM.

I would assume that some qualified nurse should come quickly and confirm all my findings about the J Tube.  If nothing can be resolved with such remedies, then this J Tube obstruction becomes a life-threatening danger – a danger quite certainly not caused by cancer, but very likely by mal-practice or medical neglect.

If Bonnie is to be admitted to any hospital for any correction of the J Tube, I want to be sure that she does NOT have to spend any night without me in the room.  Bonnie has twice been admitted to St. Joes, where she went onto the Cancer Ward, all private rooms, and I spent one night sleeping there.

At this time we do not want to be separated because she is in a hospital that won’t allow me to be in the room.

Sincerely,

Loren C. Troescher

PS Written After FAX to Office

After writing the above, and FAXing a copy to the Hospice Office, I’ve had these further thoughts.

The nurse, Margo, called me back and told me that Roslyn would be calling for directions.  Margo called me at 11:30 AM.  Roslyn had not called by 12:30 PM.

Bonnie went to sleep about 11 AM, and was awakened about 12:00 noon, with a “feeling” in her stomach.  She does not describe this as “pain” but rather as a full feeling and a feeling like she would like to vomit – but she cannot.  It seems to me that this, first-time, feeling is related to the mal-function of the feeding system, and increases the severity of the problem.

This additional data suggests a greater possibility of immediate hospital admittance and I want to be sure the data in this letter is fully taken into account.

We hope that this blockage can be resolved without surgery.

However, if surgery is called for, then for sure we don’t want Dr. Renner to do the surgery.  The reasons above seem sufficient to me.

Next, we don’t know if there is still live cancer cells anywhere, nor do we know whether there has been any metastasis – although there was none before treatment started.  We are not asking for any curative treatment of cancer, but we sure don’t want some type of treatment that increases the spread of cancer either without knowing the risks.  In other words, if some palliative treatment causes a risk for cancer spread, and we know the full facts on that, Bonnie is competent to make a decision on that.

I am not a doctor, but I am an informed layman and very interested in my wife’s treatment.

If I were a surgeon called on to replace a J Tube, in this situation, I would surely want a PET scan to assure me that I would not be cutting into  cancerous material which, because of the cutting, starts to metastasize.  We have a previous PET scan of “no metastasis.”

If we are to move ahead with a surgical action, I would expect to ask the surgeon specifically about this, “Can you assure me, without a PET scan, that your surgery will not involve cancerous tissues and cause possible metastasis that has not otherwise occurred?”

Since any surgery can cause scar tissue, and scar tissue could be a cause of swallowing blockage, I would also want to know more about that blockage and feel confident that the surgery for the J Tube does not add to the swallowing problem.  I would ask any surgeon about this.

I understand that the J Tube was probably fixed by a suture, but that by now the suture may have been resorbed and it is the scar tissue which holds the J Tube in place.  I have to trust the skill of any medical professional, but I’ve seen enough in these past few months to insist that this possible scar tissue issue be addressed and that we be informed of the risks involved with such scar tissue and re-insertion. 

Since any surgery can be stressful, I also ask if THIS J Tube surgery couldn’t be combined with “some other surgery” to reduce the NUMBER of surgeries Bonnie may need.  For instance, it seems palliative to me to do surgery to reduce or remove blockage, presuming that it is not cancerous tissue that is causing that blockage (again, CAT or PET scans seem to be indicated).

I understand that standard protocol might call for a “swallow test” to be done, then possibly a endoscopy, or somewhere a PET can, I would very much hope that the “standard protocol” doesn’t result in long delays for insurance approval, or appointments.  In this situation, if surgical intervention is needed for the J Tube, then surely these other possible surgical actions could be done at the same time, to minimize surgical stress.

We have, as of now, only an expectation of approval of a visit with someone who could get the swallowing test done – not yet a firm date when it is actually done, nor any other data on what further actions could be done or when any such might be approved and scheduled.  The swallowing test seems useful in this process, but it is not likely to resolve the swallowing.  I would like to know, even if not firmly predicted, what are the possible outcomes of reports leading to what type of resolution of the swallowing problem, with dates.

LCT

Notes:

Phone 626 799-2727 at 10:57 AM, 11 July 2004

Press zero, got live operator, gave two of my phone numbers

FAX number at Hospice office would not be seen now.

Nurse Margo will call me; she would have a home FAX number

Margo had not called by 11:20 AM

FAXed copy of this to office, notwithstanding likely non-readership, since no phone reply yet

FAXed to 626 403-3265, Hospice Office

Margo called at 11:30 AM

Will call local nurse Roslyn, who will call and want directions

No apparent interest in a FAXed report

Roslyn had not called by 12:30 PM

I recalled Hospice at 12:35 PM and asked for Margo to call,

Roslyn called before Margo called back. Roslyn said she would be here in 5 minutes, did that.

Roslyn was very calming === said that the blockage was very common and that she would handle it – she did handle with warm water and a much higher pressure of push on the manual push tube than I have used.  It did resolve in a few minutes – Bonnie got back on the water drip, now more than 20 minutes, with no beeping and no obstruction.

I asked what if the warm water did not help?  Roslyn said it would only be a “day visit” at the hospital – not an overnight stay to replace the J Tube.

We are both very much relieved.

LCT

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