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Letter To Radiation and Oncology Doctors
1831 North Bel Aire Drive
June 15, 2004, 9:30 AM
Dear Dr. Radiation and Dr. Oncology, by hand,
When Bonnie started this process of cancer treatment we had the advice of our long-time family physician that many doctors prefer to NOT have letters from patients – being so busy, usually, and also in no small part because letters may be used as “matters of record” used in lawsuits.
I am very aware of the terrible damage done to health care by tort lawyers and would like to eliminate that concern from our relationship.
Both Bonnie and I renounce any right to sue any of the medical personnel connected in any way with Bonnie’s treatments over these past few months. I would be quite willing to sign a more formal statement to this effect – and urge you to allow me to do that – just to remove that concern, no matter how tiny it may be.
When Bonnie started this treatment process we consulted Dr. Family, our family physician, about “treatment.” His advice included that Bonnie should undergo whatever treatment was considered “standard” by our team of physicians. Dr. Family 2 has taken over in regards to any “family” advice we might seek.
I have not given Dr. Family 2 any notice of this letter in advance, but I’m sending her a copy.
I talked to Dr. Radiation on Monday, June 14th. He told me that the cardiologist had reported to him that Bonnie was medically OK for further radiation treatments. Dr. Radiation advised me that it was important for Bonnie to get back on her radiation treatments promptly. I promised to bring her in today, Tuesday, June 15th, at 10 AM, prior to her usual radiation appointment at 10:50 AM.
Her symptoms today, and recently, suggest to me that there may be a “medical reason” why she should not resume treatments today. She is certainly not ruling out resuming any treatments, even today or tomorrow, or any day, but I want to recount the symptoms and experiences of the past few days, and then we seek your medical opinion on what Bonnie should do.
Bonnie has followed a routine of going to sleep with the feeding tube working, and often awakes at 2 AM, or so, and “wants a change of space.” She typically goes downstairs, without the feeding tube, and watches TV for a while.
She did that this last early morning.
She came back to bed about 6 AM with the following symptoms:
· She got cold while sitting downstairs – even though she had her usual warmer clothing with her. This was not a “shivering cold.”
· She was somewhat tired as soon as she got up to go downstairs, but
· The later climb back up the stairs caused an extreme feeling of fatigue and also very rapid “shortness of breath.”
· As far as she could perceive there was no rapid heart beat and no change in temperature
· There is a “feeling” of discomfort that eludes any simple physical explanation I can offer.
Bonnie got back on the feeding tube, with the electric blanket on, and some gentle back-rubs from me. Within a very short time she was breathing comfortably and feeling relaxed.
She actually was soon fast asleep.
Now, let me recount the good news:
· This morning, about 6 AM, when Bonnie came back to bed, her weight was up about one pound from yesterday – by our scale at 118½.
· For the first time during this entire cancer treatment where Bonnie was relying on the JTube for nutrition, she was willing and able to tolerate the fifth can of formula. Most periods of 24 hours have been marked by three cans, sometimes less. I don’t recall a single day when she has consumed four cans during any 24 hour period. She finished the fourth can by about 7 AM today and I’ve added the fifth can which may well be consumed within the 24 hours that I’m measuring.
· I also have a bag of water hanging on the IV stand and Bonnie has willingly gotten connected to the water -- for additional liquid intake. (The formula instructions call for adding water – I did that for many weeks. Lately I do not add water to the formula, but provide water in the separate bag. So, the total intake of liquid – food and water – has increased significantly in the past 10 days.
· Bonnie has been increasingly eager to drink water, even very recently eager to chew on a cherry, for instance, and spit out the mass – taking ice cubes, usually, to suck on almost constantly. She often expresses her desire for liquid, even food – this had not been true earlier.
· I keep a cup of “shaved ice” with water by the bedside and keep it refilled constantly.
· Only in the past several days has Bonnie begun to realize that SOME water is trickling down her throat. At first this was so subtle as to be questionable. Now it is clear that she is able to swallow some water. Dr. Radiation has acknowledged that this SHOULD happen since Bonnie has now been off radiation for more than two weeks, and off chemotherapy for about three weeks, for various medical reasons.
· A large part of Bonnie’s life, over the past six weeks, or so, has been what she calls “gagging.”
· As this problem became more acute we got this or that new drug to handle that symptom – these drugs generally have been helpful.
· But, the action of gagging has been ongoing for these several weeks.
· It got to the worst point, probably over Memorial Day weekend. If Bonnie just swallowed a bit of saliva it seemed to cause almost immediate gagging. This gagging was violent – I held my hand on her back during some of these episodes and there was a powerful spasm that I could feel, seeming to come through the back, but from the stomach area. These gaggings would continue for more than a minute – a repeated gagging, with time out only for breathing. During these gaggings, often nothing would be expelled.
· However, when there was some expulsion it was a very thick, very sticky, whitish foam phlegm-type substance. Because this discharge was so foamy it was hard to compare its volume with whatever liquid Bonnie may have swallowed – either saliva or a sip of water. My best estimate has been that the volume of this discharge was considerably larger than the volume of intake. In other words my non-medical opinion was that there was some “material” originating in the throat, or esophagus, coming up in addition to whatever saliva or water may have been taken. (To me this could be “dead white blood cells – the natural action of macrophages.)
· The violence, discomfort and pain connected with these gaggings seemed to be reduced with the drugs, but probably more change came with time.
· Gradually the gaggings became much less violent, not particularly painful, and less frequent.
· It actually got to the point where Bonnie was quite willing to swallow a sip of water, knowing that she would soon then gag, and preferring the sensation of the water even though she knew she would soon gag.
· Bonnie and I figured that this increased desire for water, and the decreased discomfort from gagging suggested that in due course she would probably start experiencing that some water actually got swallowed “all the way.” This has happened, and is now prevelant enough to be confident that it is happening.
· This is, by no means, any large volume of liquid being accepted, but the change is very obvious to her.
· She is now often asking for Coke, even sips of coffee and has gone back to trying to suck on candy.
· We understood from the doctors that Bonnie would start feeling better and better after treatment stopped. There was even a prediction that after about 2 weeks of no treatments Bonnie might well be able to eat. That has not yet happened, but the above changes in swallowing are within the predictions we’ve had.
· Bonnie has had a slight temperature from time to time, but as best we can sense it there has been no rise in temperature during the past several weeks.
· The few times she has had her blood pressure taken the readings seemed lower than usual for her – in the range of 120/80 once or twice. She continues to take her BP pill, through the J Tube, daily.
· She has discontinued almost all the drugs, but uses the “anti-smasmodic” pill prescribed by Dr. Radiation, also the Coumadin, and the Belladonna drug whenever she feels the need for help in sleeping.
· Bonnie gave her usual blood sample Monday, June 14th, and there could well be some explanation for her symptoms in that report.
Since the shortness of breath is the same symptom Bonnie presented to Dr. Radiation, and for which he could find no explanation from the chemo or radiation, the failure of the X-Ray for pneumonia and the stress test and tomography of her heart suggest that there might be “some other explanation.”
I do not try to have any “medical opinions” but from all that I have reported above it seems to me that Bonnie should not get radiation later this morning, without some medical review of the report I’m now writing.
Consequently I’m hand-delivering this to Dr. Radiation’s and Dr. Oncology’s office this Tuesday morning.
Bonnie is willing to come in for radiation today if, after review of this new data, some doctor can suggest that she should.
I also appreciate that a CAT scan was originally intended some 10 days to 14 days after treatment stopped -- the wait was to allow tissues swollen by radiation to return more to normal and allow a more accurate assessment of any shrinkage of the cancer.
My non-medical suggestion is that an urgent CAT scan might be called for in looking for an explanation of Bonnie’s symptoms. We would, of course, be very interested in any measurement of shrinkage.
Finally, and I appreciate this is a long letter, I want to comment that Bonnie’s spiritual beliefs give her certain “opinions” that are outside the traditional medical treatment protocols. Nonetheless, these beliefs are quite real to Bonnie (and me) and even though we make no effort to convince any doctor of their validity, let me describe some of that opinion now.
Bonnie entered this treatment process with the advice of her family physician that “debulking” of the cancer could only be done by traditional treatment. I think Bonnie has been a willing participant to this treatment.
But, at some point we believe that the debulking may be “enough” so that other, less medically oriented procedures might be effective.
In this regard I have mentioned to you, a few times, my opinion that the body can come to a point where it is ready to “expel” the cancer, presuming at this point the cancer is dead or mostly dead. We believe that this expulsion can be dramatic – as an eruption through the skin if the cancer is close to that area, or in Bonnie’s case, more likely an expulsion through coughing it up, or expelling it as a bowel movement.
I don’t recall the exact date when it started, but about two weeks ago Bonnie had the first “semi-solid” stool during this treatment period. She continues to have semi-solid stool, conducive with breakdown and metabalizing of the cancer – with expulsion through that route.
I have fully expected, and been ready for, some choking episode that might see some “mass” being expelled. As long as the esophagus has been blocked, this would not be very likely.
Now, however, as the esophagus is apparently opening slightly, last Saturday Bonnie coughed up something “strange.”
The material coughed up has always been “whitish” with no colored material and no “solid” material in it.
Saturday there was a “piece” of “tissue” in the “spit.” This was firm, not liquid. It was about ¼ inch, triangular shape, with a distinct fairly bright red dot in two of the corners of the triangle, and a faint red dot in the third corner. I examined it in bright light to get an accurate description.
On several other occasions Bonnie’s spit has contained something I can only call reddish brown or brown material.
Whether these are pieces of cancer breaking up and exiting through the now opening esophagus, or not, I do not know.
I do know that the white blood cells, particularly the macrophages, are an important part of any “natural” elimination of any foreign (dead) material in the body – and would welcome any further Neupogen shots if they are medically called for. It is real to Bonnie and me that our spiritual activities can have an influence on improving the immune system, or even white blood cells.
In summation, Bonnie is ready, even today, to resume radiation if that seems like the medically sound thing to do. Bonnie is hesitant, today, to agree with more chemotherapy without further consultation with Dr. Oncology, appointment scheduled for Wednesday.
Bonnie looks forward to talking with Dr. Radiation today and with Dr. Oncology (who will soon have the report on Bonnie’s Blood).
On October 31, 2006, this page was scheduled for the November 1, 2006 newsletter, called The Wednesday Letter. That Letter invited subscribers to click and arrive at this page. The main point of this whole newsletter is ON THIS NEXT PAGE. It is a "pop up" page. That is, it will pop up with images of Bonnie about two years after the event described on this page. The next page, the pop-up page, shows a true miracle -- and this next page should not be missed -- it is the wonder of it all!
This web site is a breath of fresh air in a world of pollution.
This web site is Copyright © 2004 by Karl Loren. Permission is granted to download, copy, distribute and use as long as the copyright notice remains attached to such use and the intended meaning is not altered.