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.

 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.

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.

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.

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. 

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.

 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.