Situation on June 21, 2004

1831 North Bel Aire Drive
Burbank, California 91504
(818) 558-1799
FAX (818) 558-7299

June 21, 2004

Dr. Oncologist
By Hand Delivery

Dear Dr.

I am hand delivering this on Monday, June 21, 2004, as I come to your office for the authorization for Bonnie giving a blood sample at UniLabs today.

We have an appointment with you for Wednesday, June 23^rd, but if it is possible to move that up to Tuesday, we would appreciate that. I will call your office later on Monday, looking for that possibility. If you feel the need for the results of the blood sample, perhaps you could hurry that along?

I want to repeat and reconfirm my earlier statement that both I and Bonnie renounce any legal rights we may have to pursue any lawsuit in any way related to Bonnie’s cancer treatments over these past several months. I write this because I believe it to be “morally right” but also because we are entering into what is possibly a “final phase” of Bonnie’s life – she is entering this phase causatively and willingly.

I am adding this portion in a different type style. All the other parts of this letter are still valid representations of our thoughts, but on Monday morning we had a discussion with a good friend, formerly RN, to whom the general information in this letter was conveyed.

She gave us some “medical hope” that we had not had, and I want to insert that data here, again indicating that all the remainder of the original letter is still applicable.

Bonnie left the hospital last Thursday with no particular awareness of pain in the abdomen. However, by Friday morning she had a sharp, small, hard knot of pain near the entrance site of the J Tube. There is also more redness around the site, and in a “horizontal line” from that site – more than I recall seeing just a few days ago. She is extremely sensitive to any touch in that area now – not so a few days ago.

I had switched Bonnie to the new feeding formula in the hospital, and continued with another can that Thursday night.

Seeing the new pain in the abdomen all I could think of as a possible cause was the new formula – so I immediately reverted to the same old formula that we had been using for some months.

That pain, however, changed and I did not realize the significance of those changes. The pain had been a small, very hard, knot near the entrance of the J tube. However, it gradually changed to being diffused, “larger” and more pain in general. We have not measured for change in temperature. My nurse friend pointed out that “nurses know” that this type of change is likely to be caused by an antiobiotic working. I regard this as good news. But it is bad pain.

Also, Bonnie has been using cold packs on her stomach for several weeks – in the hospital and at home. Our nurse friend told us that if the pain represented an infection then a hot pack rather than a cold pack was better – to draw more blood TO the area and help remove infection. It was 11 AM this morning before I got that started.

Our nurse friend also suggested that Bonnie’s feeling of “no hope” seemed very much related to “no swallowing” (as further described below). She suggested the use of “Hydroseptic” (?) to numb the throat; reduce the sensitivity of any nerve endings (in the esophagus) which might be triggering the muscle spasm causing the gagging. This is an OTC remedy and I’ve sent someone to buy some – and will be using it before Bonnie comes in to give a blood sample.

She also told me that, years ago, it was very common to use a blood sample to culture for what type of infection might be there – I’m wondering if the blood samples Bonnie has already been given can be checked that way, or whether the new blood sample (today: when and if) could have that as an added test.

It also occurred to us, during this conversation, that fungal infections are not likely to be affected by an antibiotic – and since Bonnie apparently had a fungal infection some weeks ago, perhaps that source of things is here again?

Shortness of breath, esophagal blockage and gagging relate to the same area of the spine. I know that Dr. Hoffman mentioned that the radiation could possibly harm the spine. I’d appreciate any comments on that.

Finally Bonnie was so very uncomfortable this morning, and in pain, that I decided to give her the belladonna/bibiturate elixir about 10:30 AM to let her get some sleep – I want her to have some relief from this pain and discomfort. Before she was ready to sleep she mentioned that she didn’t really feel like going out to give a blood sample. So, as of now I’ve decided to bring this letter to your office, get the blood sample authorization, and return home to get Bonnie up, or not, to give the sample.

We may have some chance to talk when I visit? Or, by phone? Or I’ll call later today.

Bonnie has “decided” that she prefers death to what seems to be happening to her body just now.

We have some very specific questions, mostly mentioned in this letter, and she would like to have answers to those questions before she makes a final decision regarding further treatments of any type and regarding death.

Both of us feel, as part of our religion, that each being “decides” whether to live or die. Bonnie is quite ready to make that decision. That decision is not yet finalized, but she expects to finalize that decision on the basis of what further information she can get from you.

As I’ve written before, Bonnie does not fear death. She is, however, uncertain about the process of dieing. It was a comfort to both of us to complete and provide you with a copy of her living will. I would repeat, even though unnecessary, that Bonnie has the right to refuse to be placed on a feeding tube, or even a hydration process, and that I have the same right to refuse such treatment if I deem that refusal to be in accordance with her wishes.

Bonnie’s only “method” of dieing, proactively, seems to be to gradually accept less and less food and water – she does NOT want to be admitted to any hospital or “place” other than home when and as this might happen. We seek your advice on how this can be best accomplished, within the laws and within your medical practice.

Bonnie has informed some of our close friends, including some of our children, of all of the above.

Now, the specifics.

Bonnie has expressed a strong desire to “cut it out,” thinking that surgery, whether with a hope for “clean resection” or as a “palliative” would give her some prompt relief from the symptoms that so upset her.

Dr. Lewis, doctor in charge on the Oncology unit, spoke to Bonnie and me a couple times during her recent stay there. When we expressed this interest in the surgery he mentioned that because the cancer had “invaded locally” it would be practically impossible to perform surgery without also cutting into and taking some of the esophagus and that would call for some “reconstruction” of the esophagus.

I knew about this type of reconstructive surgery, but thought (apparently mistakenly) that some form of surgery might be possible that would not have any significant impact on the esophagus.

Bonnie would like to get very clear and specific information on any possible surgical procedure – even if we do not wait for Dr. Renner to have all the information which he may need to give such advice. Bonnie does not feel that she wants to wait, or schedule an appointment with Dr. Renner, to get what we hope is a “generic” answer to this question. Bonnie is likely to reject another appointment beyond whatever she can learn from you on this one.

What chance is there that Bonnie could have surgery, very immediately, that would provide very quick relief, and some prediction of days or weeks of comfort, even if to not include any lengthy prediction of life? Bonnie would probably not reject any surgery that seemed to require a colostomy bag, for instance, but would still want to know the likely prognosis following such surgery.

To repeat, Bonnie experiences certain symptoms right now – is very familiar with them, and wants to experience as little as possible of any further such symptoms. It is not that “they should not worsen.” What she wants is for them “not to continue.” Early on Sunday I asked and Bonnie said, “If I could lie down, go to sleep and not wake up I would want to do that right now!” There are various people telling her, “you have to live,” but I am not in that group. It is her decision.

Second subject:

Bonnie understood, mostly from Dr. Hoffman, and some from you, that about two weeks after the full course of treatments ended she should start feeling better and probably be able to eat after about three weeks off treatments.

Of course it is clear that the intended full range of treatments has not yet taken place – for various reasons.

Yet, Bonnie rather hoped and expected that because she has been off both chemo and radiation for three weeks, she would be feeling much better, and specifically would be able to swallow.

In fact her inability to swallow was apparently one of the reasons for her admittance to the hospital, last Wednesday, and yet several tests showed no explanation for this symptom.

Bonnie continues with almost no ability to swallow anything. There has been a tiny change of improvement, but any change has been very slight. There was, initially, a very slight improvement in her shortness of breath, but sd pg 9 PM, Sunday night, the shortness of breath was extreme. If anything she is much more fatigued than she had been just a few days ago.

I am faced with an “opinion” that if I were to take her to Emergency, they would disregard any Living Will and force her to accept treatments – I need to get this cleared up urgently. As of now I cannot imagine taking her to the Emergency ward and seeing them do exactly the procedures which she has said she did not want done.

She spends full time in bed. Today, Monday, I assume I can move her in a wheel chair for her blood sample.

Bonnie had been very willing to accept the feeding tube, and her weight has remained fairly close to the same amount for several days. But, probably starting Saturday, June 19, she began to think more about “ending it,” and had less interest in the feeding tube. She does think about keeping up her feeding so that she will be able to have the appointment with you.

She and I have had extensive discussions about this – with no hesitation to touch on any and every aspect of this.

So, the summary of the above is that Bonnie expected to be better and has gotten worse. She cannot imagine how more chemo or radiation, at this point, would make her feel better – she already feels bad enough to end it now.

Finally, if there is some reasonable prediction that the swallowing problem will suddenly diminish, with or without some further treatment, Bonnie would like to know that possibility.

There may be other questions she will have.

She feels that it is appropriate for you to get these same thoughts from her, personally, in addition to a letter from me – so she is quite ready to meet you for discussion of the above.

Finally, on an administrative note, both Bonnie and I are members of the Neptune Society. I called them yesterday, with Bonnie joining the conversation, just to refresh myself on the procedures.

Bonnie does NOT want to approach death anywhere except in her own home.

If this death appears near, I expect to respect her wishes for no intervention, and would like to be able to give her whatever legal pain killers you can suggest, but to allow her to go her own way, peacefully.

At that time I have the option of either calling the Neptune Society, or local 911. If I call the Neptune Society, they would call 911. The 911 call would mean that a paramedic is expected to pronounce death and do nothing else. If the paramedics consider that an autopsy is necessary, they would take the body, apparently.

Alternatively, if there is a physician who could arrange to visit, or a nurse, to pronounce death, and lack of suspicious circumstances, Neptune would “remove the body” without further reference to an ambulance or hospital. That is Bonnie’s wish. I am an ordained minister and would conduct the memorial service.

So, we would like to know who/how I could call, at whatever time, to request a visit from a doctor or nurse who could pronounce death, clearing the way for a calm departure.

If it is appropriate Bonnie could be administratively admitted into a Hospice where, I understand, the mechanical procedure for handling death is more peaceful. Bonnie is willing to enter into that category, but not willing to physically enter such a facility. No hospice or hospital can give her the care that she wants better than I can, at home.

I have read this letter to Bonnie and she approves of it and my giving it to you.

Sincerely,

Karl Loren
Loren C. Troescher

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