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.

  

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.

 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.