My prognosis of cancer is, in part, based on statistical probabilities and, in part, how well  I react to  treatment.  As my disease progresses, I find myself being all consumed with these statistical probabilities.

I took Statistics 101,  my one and only statistics course in college some 30 years ago. I remember thinking "oh what a fun course" when I signed up.  That was before the first day of class. By the end of the second week, I realized that Statistics  101 was not going to be the picnic I thought it would be. I suffered through the course ending up with a "C".  I now find myself racking my brain trying to remember the differences between the mean, median, and mode, standard deviations, measures of variations and measures of coefficient and how they all apply to me and my cancer prognosis.

My oncologist recently explained the statistics involved in determining the success ratio of a particular control group.  He is amazingly patient with me, understanding just how important this information is to me.  I ask questions such as what percentage of patients  fall on either side of median, what percentage of cancer patients die from the side effects of the multiple drugs they take,  based on my current condition how much time do I have left, and how does switching my current chemo medicines effect my time line?  The good news is that I am responding to treatment very well, better than most.  The bad news is that terminal still means terminal, no matter how well my body tolerates this treatment, or any treatment, the end result will be the same.

I have researched first line treatment of chemo drugs vs. second and third line treatment, the success levels of all, and the statistical probabilities of survival of all.  By definition, first line chemo drugs give the best chance of prolonging one's life. There is a precipitous decline between first line and second line chemo drugs, and an even more precipitous decline between second line and third line of chemo drugs. My goal is to stay on the first line of chemo drugs, regardless of the side effects.

I have found that terminal cancer patients fall into two basic categories, those who want to know nothing about their disease and those who want to know everything. I fall into the latter group. Not that I am all consumed with the medicine itself, that I leave to my doctors, but I am very interested in my medicines.   There are 11 taken every day.  How they affect my body, how those 11 medicines affect my "time line" and, most importantly, how much time I have left are the pressing questions. I have noticed a marked difference in my health, a marked decline, over the last six months.  Knowing it is all downhill from here and that right now is as good as it is going to get is truly frightening.

The knowledge that one is  a medical statistic, a number in a control group study is uncomfortable.  The knowledge that eventually one will be a medical footnote, perhaps with an asterisk, is even disquieting to say the least.

For those diagnosed with terminal cancer, after a period of months or years, one develops a sense of being side-lined from regular life. This feeling exists no matter how engaged one is in their regular life. As the cancer envelops the body, a person becomes unable to do the simple things they used to, or become unable to do them as well. As the aches and pains increase, as one’s body starts to succumb to the disease, the sense of inevitability of the cancer becomes a reality; as one feels a sense of being marginalized. 

Friends lives continue, their careers blossom or fail, they or their wives have babies, their children grow, their futures are bright and filled with hope and joy. I sit and watch, rejoicing in all of their successes, all the time harboring a certain amount of jealousy. 

I realize that the entire purpose of my treatment is to exact an extra month at a time. The whole purpose is to focus on the small gains, with each new drug pushing the envelope, thereby giving me additional time. 

I recently saw a new set of new doctors, a cardiologist and a pulmonologist, as well as a cardio- pulmonologist. The cardio pulmonologist happens to be the ‘best of the best’, brought in only when other doctors are left scratching their heads, unable to accurately diagnosis a set of symptoms. I do have every faith in the world in Dr. H., as she has narrowed down the potential symptoms. This week I have a series of three minimally invasive tests; after these tests, I  should hopefully know exactly what is causing my health to falter.  Unfortunately, neither of the two possibilities are encouraging. During the course of our first meeting, Dr. H matter-of-factly said that after the tests she would most likely add a new drug for me to take, bringing the total number of drugs I take each day to 10. I winced at the mention of an additional drug—fortunately, she missed the look of displeasure on my face.

 I am beginning to feel like an old car-- held together by drugs, rather than parts. I still hope that these drugs will work, giving little, or perhaps not enough thought to the cumulative, and possibly negative, effects of these drugs. Each new additional drug seems to bring a new set of maladies. 

 My new job is to manage my health-- something which, being in my 50s, I had not planned on doing for another 20 years or so. I often find myself spending 20+ hours a week either in a doctor’s office; in transit back and forth; waiting for a doctor; or in some way spending time with a doctor. 

When I was originally diagnosed with terminal cancer, I was sure that is what I would die from. Now, as my body falters, my greatest concern is that my organs may not respond as they should. My fear is that I will succumb to the side effects of the multiple drugs I am taking, or some form of organ failure.

 One close friend, in an attempt to console me, suggested that dying of organ failure might be preferable to end-stage cancer-- however true the comment, it failed to buoy my spirits.

The happiest people do not necessarily have the best things, they simply appreciate the things they have- Warren Buffett

Whether you are ill or you are healthy, these words really resonate with me. I have many friends who, by all standards, are healthy and well off but are miserable. Some I have known since childhood and even as children, they were never happy with what they had, always wanting more They felt entitled to more. They were miserable as children and now they are both miserable and insufferable as adults.

True happiness does not come from accumulation of wealth, but it comes from the ability to truly appreciate what one has. This includes not only the largest and most luxurious items, but also the small gifts life has to offer.  It is being thankful and not expecting more. One of my most prized possessions is a gift from an old and dear friend, a statue of sorts. The actual cost in dollars is relatively small, it's true value, to me, is immeasurable.  It truly is priceless.

It is important to focus on what you have, whether it be your health, your friends, what ever it is that makes you the happiest. It is very easy to get caught up in trying to get ahead, rushing through life.  This is especially true in this ever fast paced life. Take a breath, be thankful for all life has given you and rejoice. You never know what the next turn in your life may bring. Tragedy very often comes with no notice. One day you may be fine and not so the next. It is easy to get caught up in the obsession of accumulating "stuff" whether it is needed or not. The more you have, the more you want, it is human nature.  But ever forget it is often the simplest, the most inexpensive things things in life that are the most precious.

There is great truth and wisdom in the statement: "A fool knows the price of everything but the value of nothing".

When I was young, 19 to be exact, I moved back to Boston, my birthplace. One of my first jobs was working for an antique furniture restorer, a job that really was my first love and my true passion. The job did not pay well, the days were long, the work was hard- I truly lived pay check to pay check. I was poor by anyone's standards. Yet those days were some of my happiest. I loved what I did, I had enough money to secure a roof over my head and put food in my belly with very little left over for the niceties of life, but I was happy. I can remember walking walking through the BackBay section of Boston on a beautiful Friday evening, just having been paid. My rent paid, my weekly food shopping done walking for a bite to eat with the little money that was left over.It was dusk, the city alive, I was young, not rich, but happy.... I was the luckiest young man alive. Over 35 years later, I  recall that moment and remember what true happiness is.

My greatest joy now comes from spending time and sharing memories with my oldest and dearest friends, my family and those I love.  The best things in life may not be totally free but they don't cost a lot either. A bottle of wine (or two) good friends and good conversation is all I need. Truth be told, I don't even need the wine.

It was not until I reached the age of 50 or so that I really gained any true perspective. The ability to put things in context, what really matters and what doesn't. At 20, there is  no perspective, no real life experience. At 56, one has perspective.

In Warren Buffet's words- learn to appreciate what you have. You will be richer for it, as will all those whose lives you touch.

   

     

Health Care Proxy Health Care Agent

    Having a health care proxy and health care agent in place is not only wise, but prudent. This is, perhaps, even more true if you are healthy rather than to wait until you become ill. Very often, tragedy strikes with no notice. Having a health care proxy and health care agent in place prior to any tragedy makes the most sense. Making these arrangements prior to falling ill allows you to discuss and make these decisions in the least emotional and rational way possible. It causes the least amount of duress for all concerned.

A health care proxy is a legally binding document that outlines your medical wishes should you become incapacitated and unable to speak for yourself. A health care agent is the person or persons designated to make sure your wishes are executed. I strongly suggest that you have two health care agents, a primary and a secondary health care agent- just in case the primary health care agent is unavailable at short notice. Both parties should be aware of each other and mirror your medical wishes. This document needs to be in the hands of your primary doctor, as well in the hands of any health care agent you designate. The document must be signed and dated by all parties concerned as well as witnessed by two separate individuals. The laws regarding health care proxies and health care agents vary from state to state and country to country. Contact the hospital where you are being treated or visit the two sites listed below to get more information regarding the laws in the municipality in which you live.

A medical proxy should include, but not be limited, to artificial respiration, artificial nutrition and hydration, surgical procedures, CPR, a MOLST, ( Medical Orders for Life Sustaining Treatment) & AND, ( Allow Natural Death ), as well as tissue and organ donation. A health care agents duties expire upon your death so any decisions regarding tissue and organ donation must be specifically written into the health care proxy. If you are not hospitalized and have a DNR it must be updated every 90 days, something your doctor can do.

The most difficult step in this process may be the first. Broaching the subject of a health care proxy and discussing your wishes in the event you become incapacitated is challenging. It is important to overcome this ill ease and have this conversation. Having a health care proxy in place also takes the decision making out of the hands of your friends and family and eliminates the possibility of conflict amongst the surviving relatives. At the time of your death, or near death, it is important that your remaining relatives rally and come together. The last thing you want to do is cause turmoil and strife.

Final thoughts:
"Death is an ending as surely as birth is the beginning. Your birth was likely a time of great joy for your parents and siblings, but you had no control over it. Your death will cause sadness, but you can have some control over it. For it to be the kind of end you envision, you must plan ahead.

Being prepared gives you and your family control over some very important things. The end of life is sad and the time together is precious. Planning ahead allows you and your family the freedom to enjoy every moment"

The above was borrowed from a pamphlet distributed Sloan Kettering Cancer Center. The exact author is unknown to me.

Additional resources:

www.caringinfo.org

www.compassionandsupport.org