Wednesday, August 8, 2012

I'm sad to report that Chris has passed away.
 Although we are all aware of how sick Chris was, it still was very sudden and unexpected. When Funeral arrangements are made I will update this Blog. I think i speak for everyone who followed Chris's Blog that he will be missed.

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:  cpb12569@yahoo.com
 
With best wishes
Christopher
 

Tuesday, May 29, 2012


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.

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 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 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

Tuesday, April 24, 2012


The side effects of cancer drugs are as numerous as the many different types of cancer.

 The 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 devistating 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 ginuea pig and being reminded that you are a ginuea 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 make be think 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.
 For 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 Feburary 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.

Tuesday, April 3, 2012

The Top 10 Things Not to Say To Cancer Patients:


The below is not my original writing, rather something I found on the web. Some of them are pee in your pants funny and I thought really worth sharing. The comments below each of the 10 are written by a therapist of unknown origin

1) My uncle Joe  had that cancer and he made it for 3 years. He's a real fighter.

As opposed to me, thought my friend when she heard this one. I must be a real surrender. Implying that surviving cancer is only a matter of  "fight" and will power actually somehow puts the blame for doing poorly squarely in her lap. Needless to say, this is a poor choice.

2) Is it that bad?

A patient's personal favorite. She loves to respond, "The Worst. The absolute worst". When faced with the diagnosis, people tend to feel it's "bad"-- they are not playing games of "relatively speaking". Let them come to terms with it's gravity without pushing your ignorance to the forefront.

3)It'll all be just fine. It's all going to work out just fine, you'll see.

You have no ability to make this situation "just fine" and both you and your friend know it. Promising him there will be no problems is not only patently absurd-- it is crazy making.

4) The Unfairness of Life Approach: Man, life is so unfair.

This statement is not only not helpful and supportive-- it may not even be true in your friend's worldview. It has nothing to offer-- no comfort, profundity, no valid or dignified response, ( should we be thinking, "yes, if it was fair, "x" would have gotten it"). Skip it completely.

5) The Lance Armstrong  Approach:
Look at all the people who have survived cancer. Hey- look at Lance Armstrong alone.

I have a handful of patients who are almost ready to murder dear Lance for his recovery and comeback. It's made their lives miserable. Accept that both Armstrong himself and his cancer are different from your friend and hers-- and don't play a game of comparing her to the best known cancer survivor.

6) Totally Oblivious

Oh no. My friend's father had that treatment and they think it was the treatment that killed him, not the cancer.

What can I say about this one? Your friend will already be filled with fear and dread about her treatments. Might I suggest that a comment such as this is well, somewhat less than helpful?

7) The All Knowing Approach- I know exactly how you feel.

Nothing could be further from the truth.  Unless you yourself have undergone the same process, you know so very little about what your friend is dealing with right now, a comment such as this is patronizing, wrong, and can leave your friend feeling more alone and afraid than before.

8) The Death Sentence: Oh God. My mother died of that.

People probably blurt out things such as this because they haven't thought it through, but it shouldn't take me, or any expert to make it that this is not a helpful statement. It makes the top 10 list with ease.

9) The God Factor: God only tests people He loves.

Best to lose this one altogether. Your  friend may not buy into this belief at all- - in fact, she may not be buying into the God thing right now, and that is her prerogative. Don't make her take a role in some theological demonstration; let her come to her own terms with God in her life.

10) Unsolicited advice: You really need to see Dr. X...try a macrobiotic diet... Try healing touch... find a support group... read this book about...

You really need to restrain yourself from offering unsolicited advice, something your friend is being deluged by. You may ask if she would like to hear about the latest research on hypnosis if she shows an interest. The best you can do is support her in the decisions she herself chooses.

Personal observation:

If you have lost the ability to laugh, especially at yourself and your misfortune you may as well be dead already.

To my good friend who used one of the above on me- I promise you I was not offended, your heart is and was in the right place. I will forever be thankful that we are friends.

I promise an original post next week.

Friday, March 30, 2012


CT Scans- Cancer
Anyone who has gone through chemotherapy knows that one of the most stressful times is just prior to the CT Scans. The CT Scans are taken and read to determine the rate of growth of the tumors.

During my time at Gilda's Club, a cancer support group based in NYC, much conversation was given to the reading of these scans.  The stress, the anxiety and the anger over them was truly palpable. For some reason, I was able to take them in stride.  They were what they were and no matter of worrying on my part was going to change the results.

I have a CT Scan on Monday and for the first time I am seriously anxiety riddled. These tests really represent a turning point in my treatment and the progression (or lack of it) of my cancer. The type of drug I am on is called an inhibitor.  As with all chemo drugs, it is meant to slow the growth of the cancer. By suppressing certain areas of the cancer cells, these types of drugs can work very effectively for a period of time. Cancer cells are like cockroaches, very, very hard to kill and amazingly resilient.  They find a way of morphing and adapting to continue to grow. The fact that I have done as well on this particular drug has been to the delight and surprise of my doctor and myself, but I have been waiting for the other shoe to fall- the day the drug stops working. For months, my oncologist has warned me that this day was coming. During  my last visit, he almost switched me to a new and different drug but decided to wait two more rounds of the current chemo and then make a final determination. Sunday marks the end of my chemo and the CT Scan is Monday.  My follow up meeting with my oncologist is Thursday.

When I started my chemotherapy, my then oncologist, different from the one I have now, did not explain the long term side effects of chemo.  He did not explain the secondary and tertiary side effects of the drug. I don't blame him at all.  Dr. Becker is an amazing oncologist with an even more amazing bedside manner, making his patients feel very much at ease and I trusted him and still do implicitly. His job was to prolong my life for as long as possible, not scare me to death with the possible and often inevitable side effects of the drugs. Nor did I have the sense of mind to ask. Some patients want to know everything, some want to know nothing. I often feel I drive my current oncologist to the point of distraction asking him every minute question I think of. He does have the patience of Job, answering all of my questions and spending the time with me to make sure I fully understand the answers fully and the implications of the answers.

Whether I would have explored other options based on what I know now is highly doubtful.  It is my best option but I would have cared to be better informed before the treatment started. It was only due to an accidental meeting that I learned of some of the long term side effects of the chemotherapy drug I am on. When I mentioned them to my oncologist, his response was "oh yes, that is right".  He did not gloss over them but he was quick to point out, and he is correct, my current course of treatment gives me my best chance for prolonging my life. He is also very quick to point out that this is the whole purpose of the exercise.

The left side of my brain understands this, it is the right side of my brain that still has difficulty accepting it and the stress and anxiety still exist.

Wednesday, March 28, 2012


Grieving:

The grieving process does not necessarily begin at the time of death but very often at the time of diagnosis. The realization that one may or will lose a loved one takes a toll on all involved.

It is important to realize that everyone grieves in different ways.  There is no right way, or wrong way, just different ways. Some choose to ignore the inevitable, some embrace the opportunity to share and be supportive and others may seem indifferent. Over the last month I know three people who have lost loved ones to cancer. How each one reacted was very different, and how their extended families have reacted was even more different. Losing a loved is probably the most stressful time in a person's life. It is critically important for those left behind to find a common ground and a way for them, as family or close friends, to unite or to reunite.

The larger the family, the more personalities involved and the more complex the issues become. Whether you are the youngest in the family or the eldest, the relationship you had with the deceased all impact the feelings once the person is gone and effect the emotions between the remaining loved ones.

If there ever was a time for a family to unite or to find a way of uniting it is after the diagnosis, prognosis, or death of the person. If there ever was a time to rejoice and to reminisce over the past, it is between the time of diagnosis and death. Over the last two years I have spoken with many afflicted with cancer and the singular common theme is the guilt they feel in leaving their loved ones, the effect death will have on those left behind. The "patient" has enough to deal with, the possibility of death, the certainty of death, the pain, the nausea, the loss of dignity, etc., that the last thing they need is the added anxiety and stress knowing that their demise will cause a rift within the family.

It is just as important, if not more important, for the one afflicted with cancer to respect and find a means of navigating the feelings of the family members. The remaining family members are the ones that have to pick up the pieces of their lives and move on. When family members are diametrically opposed to your wishes, or to each others wishes, it becomes even more difficult. There are no right or wrong ways of handling the issues but it is important to make your best effort.

I realize my last post was not very uplifting and inspiring, for that I apologize. It was honest. For those of you who commented on my lack of inspiration, I apologize. 

Friday, March 23, 2012


The new normal:

When I was initially diagnosed with cancer, it was surreal. With the exception of a small, walnut-shaped nodule on the left side of my neck, I felt fine. The news that I was terminal was difficult to comprehend. Over the last 25 months my health has declined, more recently more precipitously.  The new normal is a much more fragile body.

25 months ago I would have one, perhaps two doctors appointments a month, generally check-ups to monitor how I was doing. There was no pain nor I did not have to modify my daily life.  Now the pain is chronic and the side effects of the multiple drugs have caused me to rearrange my life considerably.

Before cancer, when I was well and working, my life consisted of work, business meetings, and more work. Now, my life is punctuated by doctors’ appointments, trips to the emergency room and an ever increasing number of medical specialists. Originally, I only had an internist, followed by an oncologist, followed by a surgeon, followed by psychologist, followed by a cardiologist, followed by pulmenologist. The good news is that I am running out of organs for doctors to monitor. The bad news is that my general health is deteriorating. What once was an imperceptible decline in my health is now highly noticeable. Although many of my friends still say I look great, very often I feel as though it is an illusion.

I recently went for a stress test to determine the wellbeing of my heart. Before the test, they took a sonogram to get a base line of your normal heart activity. During the sonogram, they found that the right side of my heart was significantly enlarged, cancelled the stress test, sent me to the emergency room where I was immediately admitted. The true seriousness of my condition did not really sink in until I was being transferred from the emergency room to my room and they insisted on bringing a portable difribulator. The possibility of my heart actually stopping never crossed my mind, not until then.  Additionally I was handed the health care proxy form, "what do you want us to do in case of an emergency". It is during those moments when you really realize what "terminal" means.

Last week I had six doctor appointments, this week, I had three and a visit to the emergency room as well as an overnight stay.

What is most distressing is that my cardiologist is not sure why my heart suddenly became enlarged.  The initial thinking was that I had a blood clot in my lung but after a series of tests that was ruled out. The fact is the best doctors in the best cancer center in the world are not sure how to fix me.  That is disquieting.

Cancer, terminal cancer is by definition a degenerative disease - one gets worse over time, whether it is suddenly or slowly it is degenerative. The drugs that are administered, whether they are chemotherapy drugs or others, over a period of time they have a negative impact on the body and cause malfunctions in other organs, other body parts. Thinking about these things in the abstract, knowing that things will get worse in the future is one thing, when the future looms even closer and closer those are the "oh shit" moments.

Tuesday, March 20, 2012


 You are your own best Doctor:

There comes a point in ones life when one can distinguish what is serious and what is not.  When a pain or ache is real or not. I am not sure exactly when it happened with me, but I am my own best Doctor. This is not to say that I can say with any medical certainty exactly what "it" is, I just know when "it" is something serious and when it is not.

 Trust your instincts and never waiver.

I cannot tell you the number of times I have been misdiagnosed.  There is at least one person reading this who is saying, "oh no he didn't".  She in fact counseled me against writing this particular post- sorry.

  Time after time I have gone to the emergency room, a specialist, or my internist and been misdiagnosed.  I'm not referring to my current internist, he is wonderful. One time several years ago, I went into the emergency room.  It was over July 4th weekend and I had woken up with an incredible pain in my lower right calf. I called my doctor but he was away on vacation and his office said go to the emergency room. After less than a five minute examination, the doctor’s informed me I had tendentious.  He wrote me a prescription for 400MG Motrin and told me to stay off of my feet for three weeks and I would be fine. I told the doctor that I was not sure what was wrong but it was not tendentious, and asked him to run further tests. The doctor actually had the chutzpah to ask me where I went to medical school- knowing of course I had not. I shut up, swore underneath my breath, took the prescription and went home and did as he said. After a week of not feeling better, I called my own doctor and he saw me the very same afternoon.  He ran a series of tests and informed me I had in fact a DVT- Deep Vein Thrombosis, a series of blood clots, and that if I had moved it could have killed me in seconds. I was tempted to go back to the hospital, find the original doctor and rip him a new one. I didn't, but to this day it still bothers me. There have been two more recent instances where I have been misdiagnosed and, after the fact, been able to confront the doctors in question.  Their responses were "oops, we were wrong"- nothing more. No apology- nothing. What I find upsetting is the extreme cavalier posture they take when be delivered the news of their errors. There is no "sorry for damn near killing you". There should be a course in medical school in humility
 The fact that I have been misdiagnosed, more often than I have been properly diagnosed, is not lost on me. The fact I could flip a coin and mathematically do better than some doctors is not lost on me either.
If you believe your doctors are incorrect in their assessment of your health, speak up and speak up vociferously. It is your body. It is your life. 

 
 For all of you that either called or e-mailed me asking why I did not post last week, thank-you for your concern. I am well, or rather as well as I am going to get. Last week was an amazingly busy week, six separate doctors appointments, a ton of reading, ( I was recently hired on as a consultant for a computer storage company ) and I had nothing positive, nor inspirational, nor important to say. When I started my blog, I determined not to have this be my personal on line diary, but more of a resource guide and a means to help others, allow them to learn from my mistakes, and offer advice and encouragement. Last week there were no words of inspiration.

I promise to post on Thursday too.
  

Thursday, March 8, 2012


Hope-Cancer

Hope is, in part, the knowledge that life can get better, not that it will, but the possibility. It is the cornerstone to sound mental health and it is essential to ones well being, whether one is healthy or ill. Hope is what gets us all out of bed to make our way through our long, and often arduous and stressful days.

Hope is what any immigrant hold on to as he makes the sometimes  treacherous journey from his home to America. A better tomorrow, a better life, a better quality of life is the desire of all hope.

Even if one is terminal, it is critical to find those victories, however small or short lived, to make ones life better.

If one lives long enough, there will come a point where one will need to reinvent ones self and redefine onespurpose. Whether it be the loss of a job, the loss of a spouse, or the loss of a parent, one thing is certain--loss is part of life.  How one deals with it is a personal choice. Give up? Fight? Just cope with the loss and move on?  How we weather these storms defines us as individuals and our ability to adjust and measures our inner strength. There are those who find a way to pick up the pieces of their lives and move on. Even during times of adversity one has choices.

God helps those who help themselves. Even though I am not religious, the idea has great meaning and personally resonates with me. Resilience is like a muscle, the more you use it the stronger and easier it is to cope.  The less you use it, it atrophies and withers away to nothing.

My blog is not only way of fighting back, it is my way of keeping busy and moving forward in the face of adversity.  It is also a very small way of giving back. Since the start of the blog, my life has taken a turn for the better- not my health, but my life. I have been blessed with finding a job, a job that has real potential to turn into something more, provided I do my job well and - providing my health holds out.  Regardless, it gives me purpose.  People are depending on me to do my job. I have also have been blessed with meeting the most wonderful woman, who for the first time in over two years, truly makes me happy and alive.  I could not be happier, my life once again has purpose, meaning, and direction. Hope, it truly is a wonderful thing. None of this would be possible had I given up hope and tried to make my life better.

For those of you who are ill and are reading this, you too can do the same thing.  My success may not be yours- yours may be better or  may fall short, but it is better to have tried and failed than never to have tried at all. Even if you are too tired to work (something I fully appreciate) you can still make small but positive steps in your life-volunteer at a hospital, cancer center, whatever it is. The life you enrich will not only be yours but those lives you touch.

Tuesday, March 6, 2012


 In Memory of Nyla Pavlish

I first met Nyla in the late Spring of 2010 at Gilda's Club, a cancer support group here in NYC.  When Nyla joined, she informed the group that she was diagnosed with stage 4 Leomyosarcoma, a very aggressive form of cancer and it had spread and she was terminal.  That hit all to close to home for me.
 
 Nyla was a statuesque beauty, whose outward beauty was only rivaled by her inner beauty, her grace, her graciousness and her charm.  She was born and raised in Nebraska and it showed. Even though she had spent over twenty years in NYC, she never lost her Midwest values. When she spoke, either in group or just between us,  she did so openly and warmly, with great affection and love, of her family and her life growing up as a child in Nebraska.

Nyla truly was a breath of fresh air, a very welcome change from the jaded New Yorkers.  Nyla was one of those rare individuals that not only fit into any situation, any group of people, she also made people feel comfortable, no matter how she felt. I know that I am richer for having known her and I and all of those who had the pleasure of knowing Nyla are worse off for her passing.

Even though Nyla was terminally ill she lived her life to the fullest.  She was a member of a local skiing and sailing club. Nyla knew she was dying but her illness not going to deter her from living life to the fullest while she was with us.  She was a true inspiration. The fall before she passed she went sailing in the Bahamas, the winter before she passed she went skiing, the spring before she passed she went sailing off the Italian coast.

In the early spring, it was obvious that Nyla had taken a serious turn for the worse.  I would call every few weeks to see if there was anything I could do for her, go food shopping etc. Nyla, always the stoic one, politely said no, but we would chat on the phone for 15 minutes or so, until she got too tired. This went on into late summer.

The morning the east coast was expecting a hurricane, I called Nyla to see if I could be of help.  The forecast was for very nasty weather and I wanted to make sure she had everything she needed. Nyla informed me that she was packing and planned on taking a flight back to Nebraska late that afternoon, before the storm hit. She had seen her oncologist only days before and was told to go home immediately, giving her less than a week to pack up a life of twenty years in NYC. As I hung up the phone, I had a very sick and uncomfortable feeling I would never hear her voice again.

Cancer is very personal, who knows and how much, but there were two of Nyla's very close friends from Gildas Club that I had to call and say "call Nyla now". Part of me feels that I betrayed her trust, but I knew they would want to hear her voice, and I was sure she too would want to hear theirs.

Waiting 10 days, allowing Nyla time to settle in back home, I sent her an e-mail.  Not hearing from her after 5 days, I sent her another email.  Nothing. Finally, after another 5 days, I called Nyla, only to have her brother answer her phone.  He informed me that Nyla passed away the day before. Neal, her brother, and I chatted for a bit and he told me that there would be a service in NYC for all of Nyla's NYC friends in the months to come.

In mid October, there was a very wonderful memorial for Nyla in midtown Manhattan.   I got to meet the other people, the other friends, members of both the ski and sailing club- all those people whose Nyla's life touched and enriched. There were tears, laughter, and stories of Nyla from her childhood.  Nyla would have been touched at the overwhelming support and unconditional love and deep affection that was shown for her.

I still have Nyla's phone number programmed in my cell phone- it is one number I will never delete.  I can't call her, but every time I see it, I smile.  I think of her and am reminded of just how truly blessed I am for having known her- even for just a short time.

From all of us who knew you, from all of us whose life you enriched, we miss you dearly.

Wednesday, February 29, 2012


As much as my cancer has taken away, it has also given.

Those diagnosed with cancer, whether they survive or not, they are never the same. Life really is the penultimate gift, a gift that we all too often take for granted. The shock of potentially losing one's life, or the realization that you will lose your life, that truly puts things in perspective. What once seemed critically important, now seems trivial and what was once trivial now seems exceedingly important. Spending time with my friends and letting them know how much I value their friendship has taken presidence. Not that work and everything else has taken a back seat, it is just that my priorities have changed.

For those of you who are healthy, I suggest you hug your loved ones, tell them and show them each and every day just how important they are. Those afflicited with cancer, whether terminal or not, do the same. It will give you, and them, a huge sense of peace. For you, there will be no unfinished business. For them, there will be the knowledge that the months, weeks or days with you were positive and reaffirming. You will be a better person for it.

I have not only the chance, but an overwhelming desire, to right all the wrongs that I have done in my life. Not that I am worried about meeting my maker.  I am, for better or worse, an athiest.  Lack of belief in God does not mean that I do not believe that there are certain "tenants" that we should all live by whether Christian, Muslim or Hindu or Druid.  Violations of those tenants diminishes those we hurt, but, even more, it diminishes us as human beings. Thou shall not steal, thou shall not murder, thou shall not bear false witness, etc. are not the sole property of the Christian religion.  If you need to go to church to learn these lessons, you have far greater problems than you know or are willing to recognize.

Not that I am looking to find the girl in my 3rd grade class whose pig tails I used to pull- I am not. I am sure by now she has not given me a thought in nearly 50 years, but there are greater wrongs.....

It saddens me that it took a life altering, life afflicting illness to come to this realization but it is better to come to the realization later in life than to go to one's grave oblivious.

I look at new relationships, both business and personal, as an opportunity  to right those past wrongs.  Perhaps people will say "well he finally got it". I am, in the end, a better human being. However, being a better human being is not easy.  It requires work and effort- perhaps one of the reasons I was not as good as I should have been. Looking for, finding, and taking the short-cuts in life is rarely the wisest of choices.  In the end, the only person you short change is yourself. In the past,  I have always believed the mantra " it is better to ask for forgiveness than permission", and in business I still do, but never in my personal life.

Those who know me best have seen a change in me, albeit a subtle one. I am different.  I believe that not only I, but all those with whom I come in contact, are richer for it.

During the past two years, since my diagnosis, I have meet some amazingly warm, kind and generous people.  Health care workers and those afflicted with cancer whom I never would have met had I not gotten cancer. Would I rather not have the disease and have not met them?  Without a doubt, but I am still richer for knowing them. I am eternally grateful for their friendship, kindness, support and understanding

Tuesday, February 28, 2012


Cancer and Anger:

It is virtually impossible to be affiliated with cancer and not have some sort of anger issues. I am not angry with the cancer.  I don't say why me and I don't say I don't deserve to have cancer.
Those who know me best, myself being first, know that I have an incredibly short and hair trigger temper. I always have and most likely always will.  However, the older I get, the less noticeable it is - just slightly.
I could use the cancer as an excuse.  "Well I have cancer I'm supposed to be angry" or it is acceptable to be somewhat angry. That is an excuse that I refuse to embrace. The fact that I have cancer forces me to take a greater responsibility for myself and others around me to keep my anger in check.  It is my problem, not theirs. Why should my illness adversely affect others?  Additionally, I am trying to grow my circle of friends,  not dwindle it. Several counselors suggested deep breathing exercises or yoga. Those who know me best would find me doing yoga or deep breathing exercises laughable. It was not until a very dear friend of mine suggested deep breathing exercises, that I actually took the idea seriously.  Surprisingly enough, it works and quite well too.
During a cancer support group session, one of the participants in the group turned to me and said, "Chris you seem very angry".  The counselor of the group, whose job it is to keep things on track and civil, sat there stone faced and silent.  Not that I blame her, I don't, but it was a cold reminder that I really did have anger issues. Unfortunately, I never got the chance to thank the woman for making the comment and the counselor for having the good sense to keep quiet.  It was a life altering moments.  It made me face the fact that I did have anger issues. Her comment was not really a surprise, for one cannot be angry and unaware, but it did make me face and address the issue.

Self realization of a deficiency is always the first step to self improvement. Over the last year, I have concentrated on keeping my anger in check, questioning if a situation warrants getting angry.  Most often the answer is no.  Occasionally my anger still gets the better of me, just ask the man at the check out register at Duane Reade who tried to talk me into signing up for a Duane Reade's discount card. Suffice to say the dialog is unprintable.

Having a little anger and expressing it is a healthy thing.  Keeping it all bottled up lends itself to a whole host of different problems. Being able to express your anger allows people to understand your frustration and never have people misinterpret your desires, a problem I seldom have.

Needless to say, self improvement is an ongoing process.  One is never finished and realizing one has a problem is always the first step. My only regret that is that I did not realize this sooner.

Thursday, February 23, 2012


Cancer- Depression & Anxiety

It is a given that those suffering with cancer also suffer from some form of anxiety and depression at some point. The depth and duration of the bouts of anxiety and depression can depend on a host of variables. Those suffering terminal cancer the effects can be even more debilitating.

Anyone who has ever suffered from either anxiety or depression knows that they often wash over you like a wave, enveloping you completely even to the point of suffocation. For some this can be chronic and very debilitating.

For any of you wondering , "is Chris suffering from anxiety or depression and is this his way of letting me know?". Rest assured I am fine, I am not depressed, although the anxiety never really leaves. Through modern chemistry, I am able to manage. I am also fortunate enough to have an extensive group of very good friends, many of which date back over 25 years, that not only support me, but are proactive in their support.

For me the anxiety and depression are a result from losing life as I once knew it, a career, a purpose in life, but most importantly a hope of a better future. To lose hope is to lose all. To know that one is biding one's time, waiting for the inevitable.... if depression was not an inadvertent side effect, I would worry. With the help of my therapist and anti anxiety drugs, I am able to manage. Anti depression drugs have a slew of side effects that make life even worse, if i was not depressed before taking them I surely would be after. Every time I become overly anxious or depressed I ask myself would I react in the same manner if I were not ill. Most often the answer is no, and I know it is me that is being irrational. It is my way of maintaining a check and balance in my life and making sure I never stray too far off.

Weather plays a major factor in my depression.  Last winter was especially rough and the depression was much worse. There were days I would not leave my house, sometimes for up to five days at a time, not even answering the phone or returning calls. This winter has been exceptionally mild which has made this year much better. Also I am now able to recognize the the first signs of anxiety and depression and proactively address them.

The more one has of anything, the less importance one places on any given item. The less one has, each remaining item becomes that much more important. If one has a career, a wife, a pet, a girlfriend and all the accouterments of life, losing one of them may seem meaningless, however to see them each slip away, each remaining article becomes vastly more important.  Hence the feeling of both anxiety and depression. Keeping busy, finding purpose in life, staying as active as possible are all essential in keeping the depression at bay.

I am happy to announce that my blog is being read and hopefully enjoyed on 6 of the 7 continents. The only continent missing is Antartica. Thank-you, one and all

Tuesday, February 21, 2012


Cancer & The 7 Stages of Grief:

A very dear and close friend recently asked me why I haven't exhibited any of the normal 7 stages of grief. For those unfamiliar with them they are, "Shock and Denial", Pain and Guilt", "Anger and Bargaining", "Depression,"Reflection and Lonliness", "The Upward Turn", " Reconstruction and Working Through", and "Acceptance and Hope".

Below is how I explained my beliefs to her, they are simple and intuitive.

Shock and Denial: I was in shock for some time. The initial shock wore off after about 48 hours, but it took about another 48 hours for it to sink in completely. Denial did not seem to make any sense. Not having gone to medical school, not having any idea of what was going on, and knowing my doctors had no reason to lie to me, I accepted what they said.  Denying what was obvious to my docotors seemed beyond foolish.

Pain and Guilt: There was no physical pain at that time, emotionally it is painful, but the human body, the human psyche is amazingly resilient.  I am not religious therefore I do not believe that it is God that does not gives us more than we are able to handle, but rathher, we as humans, have the ability to adapt to adversity.  Perhaps I am fortunate and have a greater ability to adapt and cope with adversity. For me there is no guilt, not that there are not things that I regret, but I have made peace with all those I have offended, or at least to all of those that matter to me.   I am at peace with my life.

Anger and Bargaining: Those who know me best will admit, and so will I, that I have some "anger issues", but that is a topic for another post.  However, I am not angry at the disease. I have often heard people with cancer saying "why me". I have never fully understood those feelings. I am no better, nor worse, than anyone else.  My reply is "why not me?", not that I am happy that I have cancer, but if it was not me it would be someone else, perhaps someone with less ability than I to cope. Bargaining seems silly.  The last time I bargained,  I was 16. From the age of 7 to the age of 16, I attempted to "bargain" at least a dozen times, essentially every time I got myself in a major "jam". It never worked before, it seemed hardly likely that it would work now. I am reminded of the saying, "when I was a child I played with childish things, when I became an adult I put away childish things". For me bargaining is one of those childish things and it is an exercise in futility.

Depression, Reflection and Loneliness: The depression is something that never really goes away.  I do have time to reflect, often I have too much time to reflect.  I am reminded of the mistakes in my life and the fact that I have a limited amount of time to correct the errors of my ways. Because of my cancer, I am often alone but I seldom have feelings of loneliness. I am truly blessed, perhaps more blessed than I deserve.  In the end, it is the friendships we have made that carry us through the very end and I have some very, very good friends.

The Upward Turn: This refers to the point where one accepts ones fate and makes the most of ones life.  It is difficult for me to really think of this as a true upward turn, but I have accepted my fate and am trying to regain as much of my life as I am able.

Reconstruction and Working Through: This is an extension of the Upward Turn, it is a continuing and ongoing process, one that hopefully gets better and better. I am a true work in progress.

Acceptance and Hope: I have come to accept my fate, not happily, but not fighting it either. There is always a modicum of hope, however limited.

Wednesday, February 15, 2012


Anyone diagnosed with cancer and who has  undergone chemo, either oral or intravenous, knows that the cure can often be worse than the cancer. For those lucky enough to have a chance of going into remission, it is as small but painful price to pay. For those unlucky enough to be undergoing palliative chemo, it is a very different case. Palliative chemo is usually ongoing, one is on it from the time of diagnosis until the end.

The side affects of the chemo vary from drug to drug and patient to patient. Two people taking the same drug may have vastly different side affects. Some are able to weather the side affects better than others, but even those with minimal side affects have unpleasant results.  It is just a matter of degrees. In my case,  the Sutent has a host of side affects; being extremely tired, pain, nausea, vomiting, diarrhea, tenderness of the skin on the bottom of ones feet and palm of ones hands, loss of appetite, weight loss, shortness of breath, depression and anxiety, and hair loss- that being the least of my concerns. I suffer from seven side affects. On a very good day, there are no side affects.  A bad day has all seven.

Oral Sutent is administered for 28 days with a two week break and then the cycle repeats. The deeper into the chemo regime, the more pronounced the side affects become. Week one and two are manageable, week three and four are much less so. Week five, as the chemo exits the body, the effects lessen and week six is the best of all. Out of six weeks, there are three that are manageable.  Every day is an adventure, a surprise, waking up in the morning one never knows which of the side effects will manifest themselves that day. Will it be none, one, or all seven? There are days that I am physically unable to leave the house. It is on those days I wonder which is worse, the cancer or the chemo?

There are drugs to combat the side affects of the chemo, but those drugs also have side effects.  It is always a balancing act, take too little of the drugs and they are ineffective, take too much and it causes a new and different issue. Even after being on Sutent for a year, I have been unable to accurately determine the precise dosage of medicines to combat the side effects.

My Oncologist is very pleased, with not only my treatment,  but with my ability to cope with the side affects of the Sutent. Personally, I am less pleased with my ability to weather the side affects but I have no base line to measure them against. Over the last 18 months, I have been forced to modify my entire life to accommodate the disease.

The problem with Sutent is that, after a period of time, the drugs lose their effectiveness.  Essentially the body, the cancer cells figure out what the drugs are doing and figure out how work around them. At that point they are rendered inaffective and the tumors start to grow at their normal rate, in some cases at an accelerated rate. When that happens, one is forced to go to Plan B. For my type of cancer there are essentially four different type of drugs. Unfortunatley Plan B doesn't work as effectively as Plan A, Plan C not as well as Plan B and that assumes that one's body will not have an adverse reaction to any of the drugs, an anaphylactic reaction.  If they do,  then one may be forced to jump from Plan A to Plan C.

I first started taking the Sutent, I was told that it would work for perhaps 6-9 cycles. The fact that I have done as well with Sutent is a blessing. Unfortunately during my last visit with my oncologist, he said the drug was becoming less effective that some of the smaller tumors were growing at a much more rapid rate. After my next full round of chemo, he is going to be forced to switch to Plan B, to switch me to a different chemo medicine. I currently have the balance of my current treatment, 10 days, then a 14 day break then another 28 days of chemo before I learn my fate. Although I don't feel any worse than I did last week, there is an obvious shift in my overall health in addition to a greater level of anxiety.....

More on this after my next visit with my oncologist

This will be my only post this week. Next week I will revert back to posting twice a week, on Tuesday and Thursday.

Thursday, February 9, 2012


The scariest thing about having terminal cancer is never  knowing the exact path one's cancer might take. My oncologist, Dr. Darren Feldman, is a world class oncologist, working at a world class institution, Memorial Sloan Kettering Hospital.  He is completely trustworthy.  Dr. Feldman's knowledge is based on years and years of education, seeing hundreds if not thousands of patients, and a compilation of studies based on past cancer patients. Some patients are alive but many are dead, a fact that  is rather disquieting in itself. He is giving me his best estimate. I fully appreciate the limitations of my doctors and their inability to provide me with a medical certainty.  If we were talking about anything other than my life, I would smile and shrug it off. But we aren't, it is my life.  The fact that we are dealing with my very existence demands certainy, it insists on exact, precise, medical certainty.

Not that I want to know the exact date I am going to die, although if I did I could make sure my apartment was spotless, not a dish in the sink, etc.,  and I could say my proper good-byes and make sure that all of my affairs were in order.

The thought that my days are numbered always rattles around in my head, it is impossible to shake off completely. Sometimes it is deeper in the recesses of my mind, other times it slips in the forefront. Often I will be walking down Broadway in upper Manhattan and see a parent with an infant and it hits me- by the time that infant is in kindergarten, I will be dead. It is a thought that I can never completely evade.  The reminder is constant since Manhattan is filled with young families.

February 8th marks the 2nd anniversary of my diagnosis and my anxiety level is much higher.  The changes of the seasons use to be loved and welcomed, now they are but a reminder that another three months have slipped away.

I lost a friend last September to cancer, she too had stage 4 cancer and was deemed terminal.  The really scary thing is how quickly she went down hill. A year before she died, she was skiing in Vermont.  In the spring she was sailing in Bermuda and off the coast of Italy.  Six months later she was dead. To see her amazingly quick demise at times shakes me to the core and I often wonder when it will be my time to see a more serious decline in my health. I will be writing a separate detailed posting on Nyla, dedicating the posting to her within the next 60 days.

In my last post I mentioned that this post was going to be short .  Time has been spent adding to the "Resource Guide".  There are additional hospitals, a list of Clinical Trials, as well as links to The Cancer Center Resource Guide.  Additional links on both Nutrition and Alternative Medicine will follow in the coming weeks.  

Tuesday, February 7, 2012


 Shortly after writing my first two postings, I received phone calls from close friends commenting that my writing was dispassionate. One person mentioned that she felt it wasn't personal enough, she wanted to read more about me.  Having been diagnosed with this disease for almost two years, my approach to telling my story is very different than it was in the first few months. But more importantly, although it is my story, it is not solely my disease. The focus should not be on me or my personal daily battle, but rather people should  focus on the disease.  Consider me merely the means to deliver a story, one that afflicts millions of people world wide and touches millions more.  But not just a story,  I also want it to be a world class resource guide. For those afflicted with cancer and their families, the last thing they need to do is to sort through a myriad of cancer organizations.

When I was first diagnosed, there were only three people, other than myself, that knew I was ill, the British girl (who exited my life more quickly then she entered), my older brother and my nephew.  My mother was unaware. At the time, my mother was out of the country. My brother and I both decided that this was news to be delivered in person, not via a trans Atlantic phone call. Not only did I worry about her health at hearing such news, but there was nothing she could do.  Not telling her was agonizing as I have a very close relationship with my mom and I hated to lie to her, even by omission. Mom was not due back for 12 weeks and  they were  long and difficult. The fact that she was out of the country was both a curse and a blessing. A curse because I was unable to tell her, a blessing because I needed to get over the shock and absorb the news myself. When mom finally returned in the spring,  it was a Friday.  Late Saturday morning I was on her doorstep. After giving and receiving a huge hug, the first question out of my mothers mouth was " so, how is your health"...... a very easy segue into explaining what was really happening. During the preceding weeks, I had been cautioned to break the news slowly, giving mom a bit of information, let her digest it and let her ask another question, rather than inundating her with all of the information at once.

Breaking the news to my close friends took time, over a period of weeks, as I felt more and more comfortable explaining my situation. I still remember vividly the first phone call, to one of my oldest friends. Although we are close, we didn't chat regularly.  She is one of those friends that whether we talk once a week or every six months, our friendship will remain the same, it never really skips a beat.  She is and will remain a friend for life. We had spoken a mere two months before and I remember her quizzical sound in her voice when she answered the phone.

Forming the words " I have cancer and its terminal" for the very first time was exceedingly difficult. I remember her asking  "so, what's new?"  I just hemmed and hawed, then hemmed and hawed some more, unable to even get out a single syllable. Even before I uttered a single word she knew, no matter what the news, it was not going to be good. What should have been a 15 minute conversation took 45 minutes. Finally,  I finished my story.  Her kindness,  understanding,  compassion, and empathy still touch me to this day. For the first 18 months she would e-mail me at least every two weeks and call at least once a month.  It is heart warming. We still stay in touch much more than we did before, that in itself is a huge blessing.  I know in the very end she will be with me, if not in person, then in spirit.  She is my "Rosebud".

Over the next weeks and months I started telling my closest friends.  Each telling of the story became a little easier. Most were amazingly sympathetic and supportive.   To those friends, I thank you from the bottom of my heart.  It is your friendship that gives me the strength to cope. Then there are some friends, whom I assumed were close, that heard through the grapevine that I was ill and never returned my calls.

I have come to realize that everyone grieves differently,  copes differently.  The fact that some friends have not responded the way I hoped is disappointing but I understand.  Many people are not comfortable with death,  and rather than get directly involved choose to stay on the sidelines. They are missed.  I wish they felt differently, but, in the end, it is their decision.  We are all worse off for their decision.

For all of those people who have tried to become a member and follow my blog and been unable, I apologize. If you still want to become a follower- member on the home page, on the banner line, there are options "follow", share etc. Click on the "follow" your name should automatically be added as a member and future postings should be sent to your in-box.  I emphasize "should" because, on occasion, the software does not work as expected.

To all of the people whom I don't know personally who read my blog, specifically those in Russia, Romania, Ireland, India, New Zealand, Canada, Germany and Australia, the U.K. and those in the United States I thank you. Knowing that you find my story interesting enough to read is heart warming. I encourage you to sign up as a follower and feel free to send me a message either here or to cpb12569@gmail.com

This Thursday's posting will be a shorter one due to the fact I am concentrating on adding additions to the resource guide on the right hand side of the page. Additions will include additional hospitals, a link to Cancer Clinical Trials, Nutrition, Alternative Medicine and hopefully the Cancer Patient Resource Guide.