BLOG Existing With Cancer
Existing With Cancer
CHRISTOPHER YALLOURAKIS BECK’S BLOG:
MONDAY, JUNE 25, 2012
This is my last blog post. When I started to write, I did so in part for therapeutic reasons, in part to help those less capable of coping with cancer than I, in part to be informative, and last but not least, in order to keep my friends informed about my health. I hope I have not disappointed my readers. I have decided to keep the balance of my journey private. To my dearest and closest friends and to those with whom I have been in regular or semi-regular contact, thank you for your friendship. I promise you that I shall stay in touch. To all others who have read my blog and who may wish to contact me, I may be reached at: firstname.lastname@example.org
With best wishes
Tuesday, May 29, 2012
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.
Thursday, May 17, 2012
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.
Thursday, May 10, 2012
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 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.
Tuesday, May 1, 2012
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 agent’s 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.
"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 at Sloan Kettering Cancer Center. The exact author is unknown to me.
Tuesday, April 24, 2012
The side effects of cancer drugs are as numerous as the many
different types of cancer.
side effects of cancer drugs are as numerous as the many different types of
cancer. Some of the side effects of these cancer drugs run the gammut from
being relatively benign to "life threatening". If you have not
already had a conversation with your oncologist about every drug you are
taking, I strongly suggest you do. Ask about both the short term as well as
long term side effects.
The often heard statement " it wasn't the cancer that killed, it was the chemotherapy" is not uncommon or without foundation. Often, it is not only the side effects of the chemo medicine, but the other medicines to counter balance the chemo medication, that not only can throw your body "out of whack", but can have long term devastating and life threatening side effects.
I am fortunate to be treated at one of the best cancer hospitals in the world and I trust my team of doctors implicitly. If they say "do this" or "take this", I do. However, I do ask what are both the short term side effects of each and every drug. Never do anything blindly.
I know I am a patient first and foremost to my doctors, but I am not foolish enough not to realize that I am also a "case study". During one of my consultations my oncologist mentioned gleefully that one of the doctors was considering writing a paper based on the positive results I experienced with a certain chemo drug. Not that I mind the fact my oncologist was considering writing a paper based on his findings, but it is one thing being a guinea pig and being reminded that you are a guinea pig. I understand that each morsel of data collected helps my doctors help me as well as those that are yet to be diagnosed. There is, however, something disquieting in being a piece of data in a bigger puzzle. If that seems selfish - so be it, if there ever was a time for me to be selfish it is now.
Anyone undergoing treatment for cancer understands the "cocktail" of drugs that are used to combat the disease. It is not that I am hesitant to tell my oncologist about a new symptom, a new side effect, a new pain, I do believe in full disclosure but I do worry he will say "oh we have a drug for that" and it will just add to the ever increasing list of drugs I am currently taking. Mind you, I always tell him of everything that is going on, but often with a certain degree of trepidation.
Before writing this piece I did a very specific Google search on "side effects of cancer related drugs". The number of "hits" was 1,240. You may be thinking, well "that number isn't that big", and perhaps it isn't, until you become a cancer patient- then it seems enormous.
I will often wake up in the morning with an ache or a pain, often in the weirdest part of my body. If it happens once and only lasts a matter of minutes or hours I don't give it a second thought, if the pain reoccurs and or becomes chronic I begin to question it.
My current "cocktail" of drugs is nine drugs per day, every day -and counting. Only one of them is an actual chemo drug, three of them I was on previous to being diagnosed, but the other five are all new and are designed to battle the ever increasing side effects of my treatment.
Knowing that the cancer and the cocktail of drugs is causing me to be less of a man than I was a year ago is disquieting. Knowing that I will be even less of my former self in 6 months is more disquieting.
Monday, April 16, 2012
Only those who have been sat down and told "you have cancer" can fully appreciate the devastation and turmoil, the total and utter disruption of one's life that such news brings.
those indirectly touched by cancer, the emotions can be devastating as
well, but to fully understand the full impact of those words, one has to be the
actual patient. This is not meant to minimize the impact on those once or
twice removed from the disease. Before I was diagnosed myself, I knew a handful
of people, both diagnosed with cancer and those that succumbed to the disease,
but nothing prepared me for my own diagnosis and prognosis.
To wake up every morning knowing there is this "thing" in your body that is slowly but surely eating away at your very existence is truly frightening. The thought never really ever leaves you. Keeping busy, getting on with your life as best you can, allows you to get a temporary respite, but it is the quiet moments when you are alone and you reflect on your life... the good things, but more importantly the missteps. Before I became ill, I would from time to time reflect how my life might be different if only I had " done this and not that".... if only "I had not done that".... the proverbial path not taken. Now those thoughts are all consuming.
For those of you who are reading this across the world, those directly afflicted with the disease my heart aches for you. I know how you feel and I know you know how I feel. Never before have I ever felt such a connection to complete strangers, people reading this both young and old, from all walks of life, all with one communality - the misfortune of being diagnosed with cancer. This blog truly is for you.
When I first started to write my blog I did so, partly as therapy, in part to keep busy and, in part, with the hopes of eventually commercializing my blog. As I wrote and my readership grew and grew and spread across the globe, each posting seems to bring a reader or sets of readers from a different part of the world- and my reason for writing has changed. Now whether I ever make any money from my blog is of no consequence, my sole motivation is to lend comfort and support to those afflicted with cancer, especially to those whose coping mechanisms are not a finely developed as mine. It is for those that truly need this the most, it is for those that I truly write, it is to those that my heart truly goes out.
The fact that 99.9% of the feedback I get is positive is very rewarding. Those who know me best, myself included, for me to get a 99.9% approval rating in anything is a miracle in itself.
To my oldest and dearest friends, the one's that continually check up on me, to make sure I am "ok".... it is you who provide me my strength, my ability to cope. You are never far from my thoughts and I will forever be thankful for your friendship and continued support.
To that one very special woman who recently entered my life, the one who gives me support and encouragement each and every day- you mean the world to me. No words will ever show just how much you mean to me. I love you.
Wednesday, April 11, 2012
Gilda's Club- Cancer Support Group
Many afflicted with cancer become overwhelmed by the disease and need support, help, and guidance in dealing with the array of emotions they encounter. This is true whether you yourself have cancer, or a loved one does, or if you are a caretaker for one with cancer. For some, the need for help may be short lived, while others may require more extensive, more comprehensive help. There is no shame in admitting " I need help"; we all need "help" at one point or another in our lives.
For those afflicted with cancer there is the most wonderful cancer support group called Gilda's Club. Look under the resource guide for the link to Gilda's Club. If you are reading this and questioning yourself “do I really need help?", the answer is probably yes. Click on the link, pick up the phone and call them.
Gilda’s Club is named after actress/comedienne Gilda Ratner of Saturday Night Live fame, who died of ovarian cancer. Gilda's Club was founded by her then husband, the late Gene Wilder. There are many cancer support groups, but this one, in my opinion, is the best. In addition to the support groups, which are not only for patients with cancer, but also for those caring for those with cancer, a group for family members who share in the disease, and a separate bereavement group, for those who lost someone to cancer.
In addition to the cancer support groups, Gilda's Club offers a wide array of classes and activities, everything from yoga to art therapy, special comedy nights, and much, much more. Their calendar is full, with events offered virtually each day or evening (see their calendar for monthly events).
Gilda's Club Is headquartered in New York City, with offices and chapters throughout the country. Gilda's Club is listed to the right of the screen under the resource guide section- for more information click on the link to find the closest Gilda's Club nearest you. Call them, it will be the best phone call you ever made.
Within two weeks of my diagnosis, I started to attend Gilda's Club. I knew I was not going to be able to cope on my own. I knew that it would take more than I was able to muster internally to get through my issues- it would take a "village", and a very large village at that.
Each group is small, with no group consisting of more than 15 people. Most of the groups are much smaller; my group had between 8-10 people attending any one session. It truly is an oasis for those diagnosed with cancer. I actively attended group for 13 months, and I am still a member- just not an active one.
Due to the nature of the disease, people often don't attend if they have had a chemo or radiation therapy session that day, were tired, etc. In order to attend a group, Gilda’s Club’s only requirement is that you make a commitment to attend 12 consecutive sessions. This is so that there is continuity within the group; that time is spent wisely on dealing with group issues; and that the group does not have a revolving door.
Each group has a facilitator, a licensed therapist/counselor. My counselor was a wonderful woman by the name of Bridgette. Bridgette's approach was unique; a facilitator of sorts, she allowed and encouraged each member to share, allowing each person who wanted to speak adequate time; and was at no time overbearing. She allowed conversations to flow freely, always ensuring that conversations never got off track. I do and will forever remember her with great fondness. For me Gilda's Club was exactly what I needed when I needed it the most. I am -- and forever will be-- beholding to them.
I started attending meetings in February 2010 and was active in the group until April 2011. I believe all therapy should have a start date and end date, and that one should attend for a specific purpose, fulfill that purpose, and move on. For some this takes more or less time; but I say to you -- never lose track of the desired end result-- to get better --if not physically, emotionally.