The Paradoxical Emotions Of A Fatal Diagnosis

As mentioned in a previous post, I was diagnosed, this summer, with a metastatic cancer. My chances of survival, statistically, are about 10%. I suspect this could be looked at as a 'death sentence', yet my emotions tell me otherwise.

Elizabeth Kubler Ross, M.D. in her now classic 1969 book On Death and Dying described the five stages of emotions that a dying person will encounter. They are simply; Denial, Anger, Bargaining, Depression and Acceptance. Every medical student, nursing student and psychology student learns of these phases. What is not often said is that they come intermittently and in no particular order. In addition many other emotions come to the surface many of which are simultaneous and paradoxical in nature.

The first emotion that came to me, the day of my diagnosis, was a surprising sense of freedom. I expected to be depressed, but instead I realized that I could now stop traveling around the world with my work. The paradox here is that I love my work and in many ways am defined by it, but the desire to be irresponsible and 'blow off' the work I didn't want to do led to a sense of freedom. I was now in charge of the choices I make with the perfect excuse; I could pull the "cancer card" as an excuse for almost anything (now referred to by my family as the C card").

This also led to the "Ben and Jerry's" emotion. I was a chubby teen and have spent my life on rigorously watching my weight and exercise, to the point of making a career out of teaching healthy lifestyle. On the day of my diagnosis, all bets were off, no more dieting. I knew that I would be losing weight regardless, so Ben, Jerry, it's so nice to see you again! While I know that this may not enhance my survival, the "C card" trumps the wise and thoughtful card by a mile.

The next agenda item of that day was breaking the news to my wife of 26 years (Kathy), the women I love, who is truly my best friend. This one was, as you can imagine, not easy. Frankly, this and telling our kids have been the most disturbing parts of this process. When she got home, I asked her to sit in bed with me to talk and I told her the news. She began to cry and I held her. I wanted to be honest with her and told her that I was OK with whatever happened (I actually was). She, knowing the Kubler Ross model said, "You can't go right to acceptance!" I knew it would take time to gain some degree of acceptance. Between the two of us, she has become the fighter and I am thankful for this on days when I have no fight left in me.

The next decision for us was not to tell our children for the next few days. Our son is now a college freshman in southern California. The day after my diagnosis we were scheduled to go on a 'guys' trip to his school orientation and have fun in Los Angeles for a few days. Kathy and I decided that we wanted him to enjoy this trip and the excitement of his impending college career for at least these 4 days, without worrying about my health. I still feel that this was a wise choice, but led to the most difficult 4 days of my life. As we drove south together, we talked about music, school and life. We listened to comedy, rap and rock and had a great time, but every so often I would get choked up and turn away to suppress my tears.

During the orientation I had floods of emotions, some positive and some negative, many paradoxical in nature. I knew that it was statistically unlikely that I would see him graduate. While this was difficult, even more difficult was the awareness that my illness would taint his first year of college in ways that I was struggling to accept. Our son Will is an amazing person; an athlete, a student, a romantic, emotionally intelligent and just a good guy. I so wanted him to dive into college with all his skills, joys and excitement yet I knew that having me getting sicker and maybe dying, seven hours away would be difficult for him. This has been the hardest part for me to face in this whole process.

Yet there were paradoxical emotions. I was delighted for him and all that he had accomplished. I was proud to know that he has the skills, cognitive and emotional, to do well, even if I were to die. I was so grateful for the 18 years we have enjoyed together with a great relationship. We have had so many great times at ball games, rock shows and just sitting on the couch together laughing. I knew how lucky I was to have this, even if it were now to be shorter than I would have hoped for. All these emotions were real, present and in flux. I just had to 'be' with them and acknowledge them all.

On our trip home, Kathy let me know that our daughter Cheryl (a 25 year old teacher) knew something was amiss. I gave Kathy permission to share the news with Cheryl, but to let her know that I didn't want Will to know until after we returned home.

The next day, we were able to talk to them both. Cheryl and I joked about my funeral, throwing a chemo shower where I could try different wigs and talked about life in general. I was delighted that this 25-year-old could joke with me when I needed to feel light. Our daughter is wise beyond her years and playful to boot. Will just got quiet with the news went to his room and then out to spend time with a friend. He too knew something was up all along, but was too distracted by the fun of college orientation to ask.

Three days later we were off to the UK for a long planned, two-week family trip where we played, drank, ate and laughed. We were blessed to stay with old friends and with the presence of Cheryl's boyfriend Lee (yes same as my name) who we have come to love. This was the perfect preparation for my impending months of chemotherapy and radiation treatment.

So within two weeks, joy, sadness, delight, laughter, play anxiety, tears and Ben and Jerry's and the freedom of the C card. A lot of emotion and a lot of paradox in a short period. Death and dying is not just five stages, it is a plethora of mixed emotions all at once.

More to come...

Comments

[PAPappas]

Dear Lee,
I read your beautiful post, and needed to sit with it for awhile before responding. I am very sad that you are in a position to write about this situation, and yet who else but you would share in such a way? Your telling of the sense of freedom you felt (feel?) is profound for me. I am glad this feeling has come for you, despite all that accompanies it. I am glad you appreciate your ability be loving and persistent. I know both of these characteristics about you. I hope you will ignore any of these people who try to give you advice without knowing you, and keep living your own way. Thank you for sharing your journey with us, and for being the dear friend that you are.
With love,
Pam

[Kalama8]

My daughter was born with a major heart defect and cancer, neuroblastoma. We were told that her chances of survival were very slim, as the chemo used affects the heart, which was already compromised. I am so glad that we chose NOT to listen to this MD. Instead, we sought all the help available back in 1988 and 89. We chose to integrate alternative healing AND traditional therapies. And despite all odds, with lots of prayer and help from others around the world, she lived. Today, at 21, she is coping with the latent side effects of that traditional treatment and if I knew then, what I know now, I would have pursued, to the fullest extent allowed, the alternative treatments that are available and that work. As a health coach and consultant, an MSW, energy medicine teacher, and adjunct faculty at the University of Arizona Center of Integrative Medicine, I regularly share information with those who need to know more about the treatments available. For instance, a low dose naltrexone (LDN) is now being successfully used for pancreatic (and other) cancers by Dr. Burt Berkson of NM. He recently gave a report at the National Institute of Health (NIH) on this topic. Or about the Life Vessel, which has successfully helped others with cancer and other chronic health concerns. www.lifevesselarizona.comm). If you want to live, there are many many avenues for you to try, but following the traditional therapies alone, probably isn't one of them.

[jillian222]

Oh, Dear Lee,

What a beautiful string of adjectives- love and persistence. I suspect humility could be added to your list as well. I am standing by my assessment of courage.

Please continue to let us know how you are faring.

Blessings,
Jillian

[ddanimal]

Chemo and radiation are not going to help. In the likely event that they dont kill the cancer first , they will damage your body to the point that no other treatments will be able to succeed.

Before you take risky chemo etc, read "The Cancer Industry" by Ralph Moss.

If I was in your shoes, I would follow the Gerson protocol of raw vegetable and liver juices instead, and vitamin supplements (vitamins D, K, C, coenzyme Q10 etc).

[Kim Stagliano - Huffpost Blogger]

Facing death can't be easy - perhaps that's the derivation of the phrase "ignorance is bliss." Do we really want to know what's coming? I wish you and your family well.

I have a somewhat difference situation. I am not afraid of dying. However, with three daughters with autism I am terrfied of leaving them alone in this world. I've talked to my priest about it. I will never find peace in heaven (should I get there) while my girls may be tormented here on earth. It's not possible. I blogged it here at HuffPo last year (note to self, never write your own obituary because when your own mother reads it, it freaks her out.) Parents of special needs kids agreed - it's not our own lives we dread giving up - it's what will happen to our kids.

Again, I wish you well.

Kim

[sistersuperior]

Dr. Lee, thank you for your inspiring piece. Your story and mine are similar. I was diagnosed with an incurable cancer of the bone marrow just as my youngest child was off to her freshman year in college. I had made a late career change to teaching middle school two years prior to the diagnosis. I am still hanging in there, although I wouldn't describe myself as robust. Anyway, I agree with your overall sentiments about having cancer. It is not overwhelmingly scary or depressing. Death obviously looms closer for us than for most others. However, the adventurer in me finds something uplifting about it. Crazy sounding but true.

[Lee Lipsenthal]

Thanks - I was very surprised by all the positive emotions - I never would have expected that.

Lee

[OtayPanky]

Though I love bacon (REAL bacon, not turkey bacon or tofu bacon), I don't eat it these days for health reasons.

But if I got a terminal diagnosis, I would. Sort of like the Zen guy enjoying that last delicious red, ripe strawberry before the branch breaks.

Best wishes to you - and I hope you enjoy some Ben and Jerry's while you can. I'm partial to New York Super Fudge Chunk and Cherry Garcia, myself.

[larry278]

The good Doctor writes of a different diagnosis & situation that I faced in 1960 when I was told that I had a chronic, progressive, incurable, disease. I've learned to live with the pain my disease gives me 24/7 & the limitations I have because of my disease, ankylosing spondylitis. A fused spine can be a nuisance but I was able to work till 1987. I've developed some other annoying conditions related to ankylosing spondylitis. These conditions forced me to deal with my body decompensating before I was 45. I'm experienced at growing attitudes which allow me to go on living with decreasing abilities. One of the more precious things that I've learned is that I have no right to try to make others miserable because I'm in pain. I've learned to deal with my situation by using the suggestions of my care givers. Life continues to be a joy for me. There is a possibility that I will die a happy man. Life has been an unending adventure for me. I continue to learn new ways to accomplish the tasks of daily living. I never have a dull day for I keep learning so I can survive in the least restrictive way possible. That is an adventure.
I'd like HP's "Living" section deal with coping with a chronic, incurable, progressive, disease. A number of HP's users also deal with learning to adapt to changing conditions as I do.

[macey18]

I read this entry and the comments & couldn't help but wonder why it was so focused on "the end.." I'm first thrown off by your use of statistics at the opening. I'm in a long-term relationship with my boyfriend who was diagnosed with a cancer rare in nature, and his also spread beyond where the cancer originated. I get the feeling after reading this that the focus isn't really all that hopeful. You're reassured by the reactions of your family, but in general when it comes to your diagnosis you bring up a DIRE statistic and focus on sadness. I understand emotionally it's a shocking thing - I think that I wouldn't want anyone I know diagnosed reading this b/c it doesn't emphasize the many positive hopeful cancer research advances, nor does it put statistics in perspective. Instead it focuses on the diagnosis & statistics which doesn't do much good for anyone fighting cancer. Cancer in many ways is treated similar like a chronic condition. Everyday around the word huge things are being discovered. Coming from a family that is fighting cancer and has endured coutless chemo sessions fighting a cancer that hardly anything is known about and all doing it before 30 years old I'd have hoped your message would be more hopeful. Be the change. I think if you're dealt a particular hand of cards you find a way to win, even if it means you are the first person who has done something for a disease...

[Idytme]

This reply is to you and not the good doctor. I had a good friend, a naturalist, organic food eating, healthy diet promoting (especially for dogs, she was a breeder with seven generations of her dogs eating a natural diet, so committed she came out with her own food line, started a search and rescue certification for the breed, even "captured" a wild hive of bees from the forest to start her own hives and get honey....) was diagnosed in her late forties with glioblastoma multiform, the worst grade. And I was sure that because of who she was, the life that she had lived, the deep herbal knowledge she had, how close to nature she was, her young children..­. all of that, that she would be in the 5% that somehow made it. I spent hours and hours every day looking up treatments, finding studies she could join, finding anything I could find, and she didn't make it. I took her death incredibly hard because I didn't think someone like *her* could get a cancer like *that* and being who she was, she could beat it. That was my journey, not hers. As the cancer took over her brain, so many things went wrong with her body. While she was alive, even knowing the stats I never got to "acceptanc­e"., she and her family did. At some point, and only each person knows when, sometimes that is a good thing. It is just so personal.

[ZumaBlue]

You writing is as thoughtful as it is elegant and it is a joy to read. I was wondering, since you are an expert in holistic health and I presume diet - has this diagnosis changed in any meaningful way your thoughts on how to live a healthier life? Are there any past decisions you've made about your health that you would change or modify? Does your background in healing prompt you to choose alternative medicine for your treatment or do you have a greater faith in the conventional modes? Or a combination of both? Going through this time as not only a physician but a patient puts you in a very unique position of sharing and learning! I so appreciate your gift of writing about these deep and transforming moments. I also wonder if you have a faith in life - religion, spirituality - that you feel gave you this immediate sense of peace - ? Thank you for opening your journey to all of us!

[Lee Lipsenthal]

It's funny - Intellectually, I know the benefits of healthy eating and extreme diets and have even studied and researched them, but my intellect does not always win the internal discussion. My diet has always been reasonably healthy, with occasional indulgences. I was also a vegetarian for 10 years (I did miss barbeque though). Now - it's smaller volumes of mostly healthy foods.

My intuition tells me to focus on the love in my life. I have also done research and writing in this area and I see it as far more important than anything else at this time.

[ZumaBlue]

When looking at the Blue Zones, living a life of love and value, finding joy and being actively involved in the earth seems to be the swing vote! I really love the research they are doing and what they are discovering about the areas on earth where humans do live the longest and with the most vibrant health!

Have you read about it? http://www.bluezones.com/

Our intuition is here for a reason! Thank you, I find you a very inspiring fellow traveler!

[PlaceboStudman]

Reading your commentary, hearing your first sense of emotion was a sense of freedom, it brought to mind the classic Janis Joplin line "freedom's just another word for nothing left to lose". This is, of course, completely untrue. When you are diagnosed with terminal illness, you literally have everything to lose, and this dichotomy between feeling like you have nothing left to lose on the one hand, and knowing you have everything left to lose on the other hand can make for some serious cognitive dissidence (sp?). The key, I think, is the recognition, in yourself, and hopefully by others that what is being lost is your Self. Your identity. You begin to suddenly look back at all the mistakes you made in your life, all the regrets you may have, and balance them against the fact that you don't have much time left to atone for those mistakes in this world, and you begin to question what's the point of it all. And of course, that leads to the "why me?" question, and a myriad of other questions, none of which have an answer, and the lack of answers frustrates and angers you and you end up being cynical and grouchy when all you really want to know in the long run is, what am I losing by dying?

[robbyJ]

“Nobody gets out of here alive”

Jim Morrison

[Arithrianos]

I never have had anything at all, to lose or to keep, everything is borrowed from the elements, none of it is "mine", that is just a lie that many people believe. My body is not mine, my life is not mine, my next breath is not mine, what IS mine? The ability to be aware and to respond. Freedom is recognizing that all of this is a passing show, not "real" not "mine" and not at all built to last. But of course you can still claim ownership and so create loss and suffering, that is a valid choice, it is all up to you, but that still dosn't change the reality that there is nothing to lose.

[Cranbot]

We all die. We all have to face it albeit at differing times. We all deal with it differently. One of my favorite Tshirts is Eat Right, Exercise, Die Anyway. Just a reminder to myself that all the health food, all the exercise, all the plastic surgery in the world cannot stave off the inevitable.

[jillian222]

A friend of mine, who is an accomplished nurse, jokes from time to time that "we are all terminal". Our banter about death usually rises from serious medical issues that touches our immediate lives. These conversations tend to end in comedic tones. The release of darker emotions with laughter or evoking the macabre, helps us move through troubling moments whether it is grief and our own fragility.

It seems that with the coming of age- this interesting place called the 50's- I have already lost two beloved friends. My girlfriend of decades died two weeks ago at the age of 54. I have reached the acceptance stage but the sadness still lingers. I know several people in the last year, all gentle Boomer's, who have been diagnosed with some form of cancer. One died within 6 months of her diagnosis, leaving behind a remarkable husband and 3 young daughters.

Dr. Lipsenthal, I send you every wish for a beautiful journey. Your inspiring words make me admire a man who has the courage to live and love with grace and appreciation.

[Lee Lipsenthal]

I am not sure I am courageous, but I am loving and persistent.

Thanks

Lee

[progressivegreg]

My sympathies on your diagnosis. A dear friend of mine, 67 years old, non smoker, non drinker, kept himself in pretty good shape, was diagnosed with Pancreatic cancer that had spread to his liver and spots were found on his lungs. This was back in March. He asked his doctor what could be done and was told chemo could help for pain control but Not for extending his life. He was quiet for a few days and then started to make decisions. He decided to forgo the chemo and opted for Hospice when the time would approach. He went through a lot of different emotions in the ensuing months and wrote his own obituary. If I may quote a line from it....pass­ed away at peace and happy on Sept. 1, 2009. May you and your family find peace, good luck, I still very much miss my friend!

[Cranbot]

A childhood friend's father is going through much the same thing tonight only faster. A month ago he was diagnosed with a blood clot in his leg and then they thought it moved to his lung. Upon further examination he was diagnosed with end stage pancreatic cancer. He was moved to hospice today and is in a coma tonight. He is 72. He never complained of any symptoms. He looked well.
None of us know what the next instant will bring.