Mother on Hospice

When my mother was discharged from the hospital a few weeks ago, the doctor didn't give her six months to live. Last week, my sister who has basically been living with mother for a month, took him up on that and sighed mother up on Hospice. It is beginning to look very grim for her survival and basically, she has lost the will to live. Her illness caused her to loose so much muscle mass and her appetite is so poor, she is not able to recover. I suppose I said my last good by to her today. If she is with us two more weeks, I will see her alive again when we go to relieve my sister again. Hospice has given her a very nice hospital bed which makes it much easier to make her as comfortable as possible. When a person has lost the majority of their fat and muscle, it is extremely difficult to be anything but in pain when awake. She sleeps about twenty hours a day.

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Mother

In addition to all the other numerous quality of life issues created by Revlimid/Decadron therapy over the last nine months, most of these were taken in stride and life went on as usual for the most part. However, now that the monoclonal protein number has come down to a reasonable range and appears for now to be on a plateau, this may be my best opportunity to get some quality of life back for a few months -- and I will need it because this is fast becoming a busy time of year.

It seems a lot of opportunities and events which require travel and energy (which was sapped by Rev/dex) are beginning to come together. I made a trip to Plymouth, NC and met a colleague so we could install a new radio system. That was week before last. This week, my wife and I are on the road to Hot Springs, AR to relieve my sister from caregiver responsibilities for a few days so she can drive three hours south and attend to some of the essential details at her home. My 89 year old mother's illness over the last three months, her unwillingness to go to a doctor for diagnosis and treatment, and her stay in the hospital over the last two weeks have begun to tug tightly at our resources.

After learning her PET scan results yesterday, I am sure the coming months will pull at us even more. So far, it has brought us closer than we have been in a while. I began researching "pancreatic cancer" on the internet last night. It is another one of those cancers which almost never display symptoms until it is so far gone it is almost impossible to treat. Therefore, about ninety percent of pancreatic cancer patients die within five months of diagnosis because the cancer has spread to other parts of their body, they are too old and/or frail to survive treatment, and they suffer from other complications which make recovery virtually impossible. My mother falls in all these categories in addition to having a basic apathy toward life.

I can identify with that because I became septic with pneumonia several years ago and almost died. During the course of my recovery, I discovered the apathy that develops with sever illness. It is almost like quick sand that sucks you under so slowly until you become more accustomed to dying than living. It is scary to look back on but consoling to understand a part of the dying process. Take note, our bodies were CREATED to do physical work. When we get to the point where all we can do and all we want to do is lay in a bed twenty or more hours a day, our bodies will respond in kind by using sugar stored for energy in muscle (thus removing the muscle) until we can no longer get up and move about like our bodies were designed to do. Our appetite and internal processes of digestion and metabolism diminish in response to minimal physical activity to the point where we are not capable of rising out of the mire we become lodged in -- a viscous circle if ever there was one. Sitting in a chair all day is not too far separated from laying in bed as far as the atrophy process is concerned especially if you are eighty or more years old.

SPEP March Test Results

Again, the March results were essentially the same as previous three months -- in the .2 something mg/dl territory. One has to ask, what would cause the monoclonal protein level to fall so dramatically over the initial five months then essentially hover at this low level for the following four months? I am sure I could come up with various theoretical explanations but the only way to prove this out is to either continue on the present course of drug therapy and see what happens or stop the drugs and see what happens. In terms of quality of life, stopping the drugs is most preferable. I have chosen to stop the drug therapy to see if the numbers stay essentially the same from month to month or if they begin to rise sharply. You have to realize that even if the monoclonal protein goes to zero, that does not mean I am cured or that that number will not rise up out of oblivion to create more havoc. It just means current detection devices can't detect what is left over inside the bone marrow in terms of plasma cell activity.

Therefore, the question becomes, has the drug therapy I have been on for the last nine months produced a stable plateau sourced by ten fold fewer plasma cells which are content to just sit it out for a while and take it easy or are the drugs holding back an army of angry but sleepy avengers who only need a brief intermission as a wake up call to resume production of their potentially deadly monoclonal protein toxins? What I am about to say is based on numerous accounts I have read from multiple myeloma patients who have been down this road before. Most MM patients who get in a similar situation as mine opt to stop the drug therapy for as long as possible and monitor the disease monthly. Some of these accounts include advice from highly respected doctors who have a great deal of expertise with myeloma making this suggestion to their patients. Essentially we do not know what will happen on an individual basis so we just have to stop the medication, check it once a month with a SPEP test, see what will happen, and hope for the best which is a long remission if you want to call it that -- most refer to it as a plateau.