February 26, 2001
Practical Advice from a Son
The doctor walked into the waiting room and blankly stared at my mother and I, confidently proclaiming, "Your husband has a terminal lung cancer affecting the lining of the lung. It is called Mesothelioma, and he has one year to live".
After several seconds, we asked the surgeon if we might ask a few questions. He stated that he had no time now, but perhaps we might run into him later. He then exited the waiting room.
It was determined that he contracted Mesothelioma this 2 years prior to the actual diagnosis. The disease lay latent in his body for 50 years or more, following a two year period of exposure to asbestos in his early twenties.
The motto on our family crest is Courage. Our father always reminded us of this credo, and in the end, proved it. He lived three additional years, during which time, he was able to continue bicycling, playing tennis matches, and most of his other activities.
I want to stress, that every patient's account is different. Personality, lifestyle, mood, needs, and self-esteem must be weighed frequently during the course of their illness.
This is not a time to cause or allow undue stress to the patient. It is a time for proper and knowledgeable treatment, second opinions, and decisions carefully weighed.
I am not a doctor, but I can confidently express my opinions based on first hand involvement with medical professionals involved in clinical trials that might offer hope, cure, or longevity.
I hope what I offer may affect even one individual, family, or medical professional. A significant number of points put forth in this article could apply to any fatal disease.
Avoid being complacent or taking any one person's word as your only source of information and guidance as it relates to the patient. Seek opinions from accredited cancer hospitals recommended by the American Cancer Society, American Heart and Lung Association, and similar organizations.
Do not seek treatment from a local hospital solely due to its convenience to your residence, even when you think highly of their services, friendly manner and rates. You deserve a facility and staff conversant with the disease. They must be empathetic, candid, professional, and respectful, They should take time for your questions, and consider alternative treatments if any exist.
Depending on the age of the patient and the progression of the disease, it might be better that treatment plan consists of a blank piece of paper. Yes, nothing!! The toll that chemotherapy, radiation and the like can have on a patient can be devastating. Weigh this decision carefully. My personal rule of thumb was to proceed with surgery, if there was sufficient pain, or such treatment was approved by 2 medical institutions or practicing oncologists.
Any procedures to reduce fluid build-up will provide great comfort to the patient. X-rays will immediately indicate how much fluid is present in the lungs. Still, at times procedures to remove the fluid are uncomfortable, and require a hospital stay. It is very important to keep watch on the re-accumulation of fluid. This may be signalled perhaps by weight gain, shortness of breath, clothes fitting tightly, swelling and other factors.
X-ray early and often. Establish a schedule as to when the next X-rays should be taken. Several month increments are not enough. X-rays frequently to determine the fluid build-up, and any affect the fluid and cancer has on vital organs. Draining the fluid will not destroy the tumors, but it may provide significant pain relief and ease the ability to breathe freely. The doctor may be able to suggest ways to drain the fluid in a more comfortable manner. Each drainage will become more difficult, leaving fluid in the body that cannot be released, fluid will accumulate in other areas of the body.
Ensure that the patient is kept active, happy under the circumstances, and to reiterate, obtain X-rays frequently to determine the fluid build-up, and any affect the fluid and cancer has on vital organs. Draining the fluid will not destroy the tumors, but it may provide significant pain relief and ease the ability to breathe freely.
There is no reason why a patient, like my father, could not return to a limited range of normal activities with doctors approval. The patient may be apprehensive at first and shaky at best, but the joy achieved will outweigh all else.
It may take frequent positive encouragement to motivate the patient. My father resumed tennis several months after diagnosis, and multiple procedures to reduce fluid. He had a collapsed lung. but had his picture in a local newspaper after winning a senior amateur tennis tournament. The caption quote? "And I beat them all with one lung!".
My father was fortunate to have little pain. Yes, he did have discomfort as a result of the initial fluid drainage, decreased mobility, lack of lung capacity necessitating oxygen supplements.
In some cases the disease progresses at a very rapid pace. In my father's instance, it took years. There are no hard and fast rules.
At some point the fluid may not be drainable endangering the heart. The doctors may recommend insertion of a "heart window": a wall of material inserted near one side of the heart to ensure that the fluid does not press against the heart and impair its beating. Make sure that the surgeon has performed such sugery before preferably more than once or twice.
It is no sin to go in search of a more experienced doctor/surgeon. Our local hospital (not a cancer institute) had a very good surgeon, who had performed this procedure three times.
On the day he was about to perform the heart window surgery, the cancer institute returned our phone call, and informed us to cancel the operation.due to lack of experience. My father was transferred to another hospital, where such a procedures are routine.
- Lessons to learn
- - Ask plenty of questions -- there are never too many. You deserve specific and complete answers that you feel you understand.
- Second opinions are critical. How knowledgeable and skilled is any doctor in this frustrating unpredictable disease?
- Is the patient at the best possible facility for treatment? The best facility may be an hour or a state away. It may require you to stay at a motel while the patient is at the hospital. If this is the answer, it is time to book your motel reservations. In some instances the hospital might allow a close relative (husband/wife) to stay in the same room with the patient.
- If the doctor will not answer your questions, - it is time to cut the cord and move on. We are dealing with human life, not the routine repair of your car. We have been raised as children to put so much trust in doctors that we accept their diagnosis and brevity at face value. Think about that. It is probably true that we ask more questions about our cars, parts, alternatives -- seek a second or third opinion regarding a piece of metal or plasti. The inner workings of our bodies do not come with a manual Some states require a car to be inspected annually. Do you have a physical each year?
- Do not let the doctor's lack of knowledge, behavior or attitude get you down. I recall two weeks when my family would not speak to me because of the ruckus I stirred. Why? Because I challenged authority. Let me state this simply: a doctor is a person, and is doing a difficult job for which they usually garner a great deal of money, and respect. However, they put their pants on one leg at a time.
- I thoroughly read the medical chart outside my father's room. I compared what was documented in my fathers medical file with my own research, talking to others with the disease via the Internet, and conversing with doctors who were in charge of clinical trials. Why? Because my father was dying, I wanted to know everything I could about the disease, treatments, medicines, and practices.
- Best Practices is a term I use to refer to the approach the doctors and medical staff take; their personality, empathy, and of time
- - Do not be afraid to ask for references-other families you might speak with that have dealt with this hospital and staff. If you were hiring an individual for a job, you would check their references. Well my friends, you are hiring a hospital, doctor, and staff for a more important job that has dire consequences. Without this best practice - you will not obtain a sufficient comfort level.
- I reviewed the medical file to look at vital signs, procedures, notes, and whether medicines administered coincided with my book research, conversations, with other patients, discussions with those involved in clinical trials. At one point I asked the doctor if had sprayed the lungs with an agent to help reduce fluid build-up. He stated he had not. But that he could spray a myacin derivative in the lungs. I asked, "why not use talc"? His response was that he preferred the myacin derivative. I informed him that my readings indicated that a myacin derivative was approximately 65% effective in reducing fluid build-up, while talc was 85% effective. There was no response as he walked out of the room.
- The medical file informed me whether the nurses were performing various tests and readings on a strict schedule. A patient requires a consistent schedule in order to determine how they are progressing or responding. Taking a measurement once every three, six or twelve hours is acceptable assuming the staff are uniformly trained and perform the measurement in the SAME manner each time.
Be Aware. Observe. Question. Snoop, if necessary. I found a discrepancy in the medical file that related to an inadequate schedule, lack of training, and a doctor who accepted what was written. I kept checking the numbers in the medical file that denoted the amount of fluid draining from my father's chest tubes. This fluid accumulated, in the drainage container at the foot of the hospital bed. It's similar to adding a random amount of water to a measuring cup every hour, and then taking note every three hours of how much more in the cup. One day our surgeon read the chart outside, walked in, and pronounced, "It appears that your condition, based on drainage, is three times worse than two days ago. This is not a good sign. Your drainage should be decreasing! I have heard of new math but this was ridiculous. My father was doing two to three times better
I was incensed. Anger, stress and other emotions can be positive motivation when well channeled. Not only were we dealing with human frailty, we were also dealing with inaccurate information. I firmly said without a tremor to my voice. "Doctor, I believe you are completely incorrect. The surgeon and my family stared at me. He asked me to repeat myself, common response when we hear something that just does not seem to register. I went on to explain that the chart was incorrect, due to the fact that the nurses were not on a strict schedule in writing down readings from the drainage reservoir, and that they also were not counting correctly. I was taking a big chance, because, although I had noted that the readings I took differed from what the nurses wrote down.I had not asked the nurses their method of counting the fluid from my father's lungs. The doctor did not believe me. I asked him to bring in the nurses and ask them how they counted the output in the collection reservoir. He complied; and some counted by 5's, and others by 10's. The doctor gave me a look that was indescribable andasked the nurses to come outside where he could speak with them privately. An apology from the doctor, or the nurses for inaccurate information which upset my family would have been a happy ending to this encounter. Nonetheless, I thanked the nurses for their time.
- You have a right to ask questions, and to be persistent. Obtain complete answers, to your satisfaction. To be fair, a lot of medical professionals know their limitations and will admit them and seek counsel with others. In my opinion, a good doctor is candid, empathetic, takes time, comforts, explains, explains, explains. He ensures his staff is trained, makes frequent appearances, keeps you apprised, admits mistakes, apologizes, is not offended if you seek a second opinion or challenge them.
- Do NOT be shy. Ask your doctor about statistics and percentages of survival, how many patients have they treated with this disease, how will the disease progress, what is the range of life expectancy.
- If the doctor remains aloof or uncooperative, or you feel ill at ease with the support you are receiving. Tomorrow may be another day for you but will it be another day for your loved one? I think a good many doctors open up a dusty old medical textbook, look up the word Mesothelioma (or any fatal cancer) and see the adjective incurable next to it and act accordingly in their treatment and interactions with the patient and family.
- If the person who has a fatal disease runs the household affairs (food, cooking, etc.), ensure that the survivor has some companionship or someone to help them after the person passes on. If the person who has terminal cancer runs the finances, they should teach the other person or relative how to manage the affairs. You might employ a lawyer, place accounts in various trusts, and assign trusted third parties as signators on accounts where appropriate.
- My father was concerned that my mother would not have reliable transportation. Therefore he replaced the 3 year old car with a new one before he died. My father had a goal to simplify the finances so that my mother and myself could take them over. He even went so far as to address envelopes and place postage stamps on them for periodic mailings of payments. I believe that these small tasks kept him busy and added purpose and longevity.
- Cancer patients, can receive great satisfaction out of completing everyday tasks -- and leaving no unfinished business. There is no reason, except pain or doctors orders that the patient cannot go to a movie, dinner, visit friends, etc. - Sometimes doctors, or even hospice care (which I highly recommend when needed) err on the side of allowing the patient to simply lie in bed. I encouraged my father to rise. After 1 month of being sequestered on the second floor, he proceeded down stairs. It was difficult for him, nearly a minute per step. My mother and I were by his side and in front of him for safety but he made it without any actual assistance. After that, my father went up and down stairs on his own -- and soon, and soon he had resumed his life instead of waiting,
Hospice is wonderful, with very giving people. Use them when necessary. The goal of Hospice is to make the patient comfortable in the final stages... I recall the Hospice nurse advising me (after I had asked) that it was not a good idea for my father to go downstairs and walk about. I asked why. She stated that my father seemed comfortable where he was-upstairs, lying in bed. Hospice is there to make the patient comfortable. The intentions were good, but in this case, a change of scenery (downstairs) for my father proved better. Each patient will vary. Hospice can detect things you may not.
- Exercise is good. The most progressed terminal cancer patient should still be given something to do. It might not be much more than movement, and simple breathing, but life requires purpose.
- Showering: It may be hard for a weakened patient to stand in a shower. Hire someone reputable, to install handicap bars. If you have a shower (which my father preferred), put a small stool in the shower for the person to sit on. Get an extendable shower head on a hose. You are restoring normal daily activity to the patient. End-result: patient self-sufficiency to a small degree, increased self-esteem, and increased confidence to attempt other tasks.
- And while we are in the bathroom, get bars around your toilet if you can. If you can not purchase two port-a-potty's. They have a lid and a pail. Most are quite strong. Keep one by the bed so that the patient can just roll out of bed and on to it. (Even walking ten feet to the bathroom can seem like a mile in the later stages.) Take the other port a potty, remove the pail and place it over the regular toilet.
- If there are any issues that need to be dealt with, like estranged children, brothers, sisters, etc., get these out in the open. It will assist the family during and after the ordeal. Try to discourage the patient and family members from holding grudges. Whomsoever needs to step forward should, regardless of fault. The result, few regrets.
- It is very important that family members, friends, husband, wife, children realize the toll a disease can take on the caregiver. You may ask "Why would the disease that my loved one has, take a great toll on me? I love this person, they are my life and I would do anything for them." The answer is simple. Your love and feelings for them are strong indeed. But, it can be mentally and physically exhausting to see your loved one slip into a terminal disease. You put on a happy face for the afflicted and your friends, but beneath it all your heart, spirituality, strength, and memories will be stretched in every unimaginable direction. You may become depressed, you may neglect your basic needs for food, exercise, independence, outings, friends, rest. You MUST also let a doctor and/or counselor treat you as needed. Life will go on for all. And to quote Hugh Prather from his book (out of print) Notes on Love and Courage, "Love the Magician, knows this little trick where two people can walk in different directions yet always remain side by side".
There are questions if other agents than asbestos can cause Mesothelioma. There is also a question as to it is hereditary.
If any member of the family regularly brought asbestos home due to its embedding itself in (for example) clothes, the small particles can be ingested through the air by other members of the family. This is quite rare however, and the exposure probably would need to be almost continual. If this is of concern, seek an expert
For this specific disease, there is the potential for compensation as part of a class action suit regarding asbestos exposure. Seek a lawyer who will explain the contract, fees, where a case can be filed, what similar cases have settled for, and burden of proof.
I dedicate this article to my entire family, those that tried to help, friends, Hospice, and my Higher Power. However I want to single out my mother, now in her 80's, still a beautiful woman inside and out. It is an added bonus to think of this person as a lifelong friend.
There are continuing clinical trials that you may apprised of by calling the American Cancer Society or the Heart and Lung Association. Inquire about clinical trials and use PDQ (Physician Data Query) for the specific disease.
I suggest utilizing the Internet also available at most libraries.
Good luck my friends.