The Art of Dying

Last week, I underwent my first CT scan since stopping chemotherapy in March 2018. It would have been surprising for the tumors in my lungs and spleen to remain unchanged in size during this period. Nonetheless, I admit to secretly hoping that there was little or no growth.

Instead, all of my existing tumors roughly doubled in size. In my lungs, several nodules that measured one centimeter in diameter are now two centimeters. Cancer in my spleen grew from two centimeters to four centimeters.

A few new spots also appeared. In particular, in the mediastinum and thoracic nodes near the heart, thymus gland, windpipe, and large blood vessels.

In other words, cancer resumed its growth in the absence of chemotherapy.

However, with a taste of life without the toxic effects of chemo – I don’t want to go back. A point that I made in the recent Forbes article and video The Art of Dying.

In keeping with that theme, I’ve decided to remain off treatment. The obvious result is that cancer will continue to grow unabated. It wasn’t an easy decision, and it wasn’t made in a vacuum.

During today’s appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, we discussed a lot of topics: How quickly will my disease progress? When will my quality of life diminish? How long until I die?

All valid questions, but each very difficult to answer. I already witnessed the perils of making such predictions last summer when I didn’t expect to see my 49th birthday. And yet, here I am – having just enjoyed the best several months since first being diagnosed in late 2015.

When my treatment changed from curative to palliative intent, I knew that cancer would likely claim my life. It didn’t stop me from living. In fact, in many ways it made me appreciate life even more.

Some readers will offer battle/combat analogies. “You can still beat this.” “Keep fighting.” “Don’t give up.”

Fighting words may help some people, but I prefer to embrace acceptance. My patient advocacy efforts, such as raising awareness for the human papillomavirus (HPV) and various cancers it can cause (including mine…), are not made more or less successful based on my disease outcome.

Throughout my life, I did things my way (cue Frank Sinatra). And I don’t plan on changing that now. I feel good and plan on enjoying it for as long as it lasts. Quality, not quantity, of life, is what matters most to me now.

Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.

46 thoughts on “The Art of Dying

  1. Not what any of us wanted to hear…..God how i hate this fucking disease. But you have and continue to handle it with grace and class. We know I understand the decisions you have to make and how Lorie and the girls feel through it all. But you have helped us to understand and continue to always hope for tomorrow. There are no words Michael to tell you and the girls and Lorie how I feel…you all know. From my heart to all of yours …I love you.

  2. Michael, You have faced your cancer with so much courage and now with so much grace. During the last 2 1/2 years your advocacy has been remarkable and added to the list of your life’s accomplishments. My heart goes out to you, Lorie, Rosie, and Meg, but your journey isn’t over yet. One day at a time…

    • Many thanks, Jeanette! I greatly appreciate all the kind words. And like you said, one day at a time…

  3. What a powerful video. Your courage is unbelievable. Congratulations on all you have accomplished. You are one in a million.

    My prayers will continue everyday for you, Lorie, Rosie and Meg. Sending our love to you.

    • Thanks Carolyn! Glad you liked the Forbes video too. Appreciate all the prayers. Love to you and the family!!

  4. What a courageous human being. This is incredibly sad, as Michael is clearly an empathic, caring and soulful person. He thinks of others before himself, and the impact his death will have on others. The world will be much worse off without you, Michael. Thank you for sharing your journey.

  5. In the heart of man there are fears and expectations, in nearly all cases we have to rise to meet them, it really appears that this is so. Blessings

  6. Hi Michael, you don’t know me, but I stumbled across your blog (thanks to Google) many months ago as I was researching HPV and the potential long term effects it can have. I am one of the growing population of HPV victims, not entirely sure of where/whom I picked it up from. I have a high-risk strain and it has already caused enough havoc that at the age of 37, I underwent a hysterectomy. Although not a cure, it eliminates one major tissue in my body where it can potentially cause cancer (and I was done having children). I want you to know that reading through your blog, starting back at the beginning, and through some of the speeches and research you’ve shared, it has opened my eyes to how this virus can not only affect my body, but my husband’s as well. With that knowledge, he and I discussed and stopped some of our bedroom activities…hoping it’s not too late. Time will tell. Thank you for taking your diagnosis and using it for good – to educate others about the potential risks and serious threat that is HPV. I hope your research and your story will continue to pop-up in Google searches, like mine, for many years to come. Godspeed.

    • Sorry to hear about your experience with HPV, Melissa. Thank you for sharing. I’m glad you came across my blog and hope some of the information was helpful. Thoughts and prayers for good health to you both going forward!

  7. Death is unfortunately something we all have to accept. This was not the news we were hoping for, but we are all here, accepting it with you. I’ve said it before and I’ll keep saying it… your courage is incredible. The way you have chosen to educate others and document your story is inspiring. Oh Michael, we all love you so much. Sending good energy and strength to you and your lovely family. Thank you for coming to see me last month… it really meant the world to me. I’d like to see you again. <3

    • Melissa – thanks for the note. Not the news we wanted to hear either. Appreciate all of your kind words and good energy! Hope we can get together again too!

  8. Dear , have always looked forward to your posts & really appreciate how U have undertaken Ur journey. My thoughts r with you and your family members. Live as U it and enjoy the moments with your family members.
    Keep posting

  9. We should all keep your closing words in mind, every single day: Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.

  10. Oh, how I wish things were different for you. This is not the news any of us had hoped for, but despite being faced with almost impossible decisions, you remain an example to all of us in how to face these decisions thoughtfully, and with grace. Thinking of you and your family. I’m wishing you peace and quality of life.

  11. Michael,
    I very much understand your post and interview. I can only say that I hope you have very special moments with your family in the days and weeks ahead. You and your family are so very fortunate to be together through this. You have created an environment to add beauty, strength , and courage as your legacy to the girls. As a father, that is something for you to be incredibly proud to be able to provide for them.

    My best to all of you,
    Ilene

    • Ilene – so nice to hear from you! Thank you for the note. I have been very fortunate to have Lorie by my side since diagnosis. And as a father, I’ve tried to lead by example for Rosie and Meg. Best wishes for good health to you and yours!

  12. Thinking of you and your family (including your sweet doggies), Michael. Thank you for sharing your journey. You have helped me understand HPV and the trials/tribulations of cancer much more than 20 to 30 books could ever have done. I wish cancer was in a historical notation….it will be someday. Sending you peace, love, joy, and warmth. I too choose quality over quantity.

    • Thank you, Brenda! Glad that I was able to help educate through my blog and book. Appreciate the thoughts and raise a glass to “quality” over “quantity”

  13. I am honored to call you what is one of the most important words in the Englsih language – FRIEND. That you will always be! I share all the thoughts in the amazing comments made above to this current post. Let me know when we can have a call.

    Your FRIEND – Jordan

    • Jordan, it has been an honor being your friend going way back to the early days of the annual dinner meeting at BioNJ. Thanks for the note and let’s do a lunch again soon.

  14. Cancer is heartbreaking and to see someone as talented as you taken from us is just terrible. The decision to go with quality over quantity is something I also wrestle with, and like you, I’ve decided on the quality side of the equation.

    You may not have led that lifesaving drug to market but you have educated and inspired many. May you and your family have some time to savor life.

    Pat Wetzel

    • Thank you, Pat! Appreciate all of your kind words. Best wishes to you for good health going forward!

  15. After reading your post, I thought of this exchange between band members in the film “This Is Spinal Tap”: Nigel: “It really puts perspective on things…” David: “Too much, there’s too much fucking perspective now.” I had hoped you would report better scan results. As someone who is between scans after treatment for HPV-caused oropharyngeal cancer, I could face a similar situation down the road. I hope I would handle matters as gracefully as you have. God bless you and your family. I keep you in my thoughts and prayers. Carry on just like you plan! I am grateful for your sharing. I will keep reading and getting the education — even when the learning is tough to take.

    • John, since you’re a fellow Spinal Tap fan – I’ll put this in relatable terms. In the amplifier of life, mine goes to 11. Is that better than most? As Nigel would say, “Well, it’s one louder, isn’t it? It’s not ten.” Keep the faith, as the vast majority of HPV cancer patients are cured. The treatment sucks, but you’re cured in the end. I am, unfortunately, the exception. But don’t feel bad, I’ve been at 11. 🙂 Thanks!

  16. Hello Michael. I had prostate cancer but, thankfully, seem OK now. Sorry to hear that the cancer seems to be getting worse. It is your decision whether to stop chemo or not. You are still relatively young and, except for the cancer, in relatively good shape. However, if you have decided to let nature take its course and enjoy whatever time is granted to you, so be it. I emailed you my thoughts regarding a possible link between HPV and prostate cancer – not a new idea, but one that is not widely accepted (yet).

    • Dear Ralph – thank you for the note and recent email. The HPV link to prostate cancer is interesting. I found the following abstract on the topic below. I haven’t had any prostate issues, but will be curious to see if further research establishes a link:

      Aging Male. 2018 Mar 23:1-7. doi: 10.1080/13685538.2018.1455178

      Human papillomavirus and risk of prostate cancer: a systematic review and meta-analysis.

      Russo GI, Calogero AE, Condorelli RA, Scalia G, Morgia G, La Vignera S.

      Abstract
      BACKGROUND:
      There is growing evidence showing a putative association between high-risk human papillomavirus (HR-HPV) infection and an increased risk of PCa.
      OBJECTIVE:
      The aim of the current meta-analysis was to evaluate the association between HPV infection and PCa risk.
      METHODS:
      This analysis was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-analysis guidelines. We included all studies on HPV DNA or antibodies detected in biopsy tissues or sera. Available data were extracted from the article, including means and standard deviations in all case-control groups.
      RESULTS:
      Thirty studies that investigated the link between HPV-16 and -18 were identified as eligible for this systematic review and meta-analysis, including a total of 6321 participants. The pooled OR showed increased risk of PCa (OR =1.37; p < .01) in men positive for HPV-16. There were seven studies with 2391 PCa cases and 4059 controls investigating the association between HPV-18 infection and PCa risk. Significant heterogeneity between study was found in the pooled analyzes. The pooled OR did not show increased risk of PCa (OR =0.80; p = .49) in men positive for HPV-18. CONCLUSIONS: This meta-analysis suggests that HPV-16 infection could represent a risk factor for PCa, whereas we found no such association for HPV-18. Further well-conducted studies could be useful to confirm this conclusion.

  17. Very informed decision Michael. I am a current 3 year survivor of pancreatic cancer. I had the whipple surgery after 6-8 weeks of gruelling chemo followed by straight on body radiation to get tumor to become operable. That is when I had the whipple. Then had a stent travel and hang out in liver before removal. I had a total pancreectomy and spleelectomy Sept 17. Now am a type 3C diabetic that will have to take insulin & digestive enzymes the rest of my life. Survival can be a relative term when it depends on expensive meds and the hopes an endocrinologist understands how diabetes of one without a pancreas actually works. The pain, nausea, and sick inside feeling has yet to go away. Could take up to 2 years if ever. So your comment regarding Kim’s story being one of seldom has been my experience as well.

    Enjoy your life and family to the fullest in the best physical shape you can muster.

    • Vicky – Sorry to learn of your prior pancreatic cancer diagnosis, but very happy to hear that you have been free of disease for 3 years. That is great! Of course, as you point out – quality of life can be challenging. Best wishes for clean scans and good health going forward!

  18. my father was 68 years old when they discovered that he had nasal pharyngeal cancer. He went to many doctors and they gave him many different diagnosis. We took him to the Mayo Clinic in Florida and on the third day they told him what he had. We could only find one doctor that would operate on him since it was such a high risk surgery. He was at Vanderbilt University Hospital in Nashville, Tenn. Mayo Clinic wouldn’t do it and neither would M.D. Anderson…..as the old saying goes, the operation was a success but the patient died anyway. There were many reasons why but its not important now. He was the best father in the world. Sharon Green

  19. Michael…I am so very sorry to hear of the disease progression and truly hope that its recent growth is as far as it will go for some time.

    I want you to know that even though you don’t know me, you have been and will continue to be a source of great inspiration to me. We have shared the same disease and although mine seems to have been put to rest for now, my thought and feelings throughout my own cancer journey have been quite similar to yours.

    I hope that you will continue this blog and continue to share your journey with your readers. You have chosen life and this so inspires me. I wish you much joy and contentment as you move forward!

    (As an aside, I work in in biotech as well…for a CRO, and specialize in cancer clinical trials. I am in data management, and, oddly, was assigned a head & neck study right before being diagnosed with my own disease in summer of ’16…how creepy-strange is that?).

  20. Hi Michael,
    Your disease progression is certainly not what we had hoped for. To say that you have faced this illness with grace and courage is a gross understatement. Given the inevitability of death for all of us, I thank you for being an exemplar of the art of living. We continue to hold you and your family in our prayers.

    – Rich

  21. Michael:

    My name is John I’m 51 years old. It was like looking in a mirror reading your blog today. I was looking for trials and came across an article that referenced your blog. I was diagnosed with stage 4 cancer in March of 2016. I started losing my voice in October of 15.
    Cancer was on my glotis HPV positive. I have had an eerily similar path to follow as you. I thought I was on the other side of cancer then in December 2017 my scan was bad. I had surgery in March of this year to remove three spots that had spread to my lung, In June I had a pet scan that showed three spots on my hilum lymph nodes. I had previously sought a second opinion with Dr. Pfister. My Oncologist said to take the summer off some new studies coming out in the fall and then to determine what to do. I have been struggling with what to do next as I feel great right now and so don’t want to have chemo again the thought of having a port put back in is so unappealing to Me. I struggle internally with wanting to enjoy what time I have left versus doing anything and everything that may help. Some days I feel so grateful for the day and I have to remind myself of that. I have two great sons one 14 and one 20 and a great wife great friends etc. Some days I struggle with staying in the present and feel pressure to do all I can to heal. I’ve changed my diet to vegan no alcohol etc. I just want you to know your not alone and that although I cant claim to know what it is like to walk in your shoes, I know what it is like to walk the path that you are on. I was at an acupuncturist office recently on the wall it said yesterday is history tomorrow is unknown and today is a gift, I try to live by that although I struggle some days. I wish you the very best and hope that you can find happiness and be at peace as often as possible. John N from CT.

  22. Michael, my brother had a great PET scan in December and has just had some bad news from a CT Scan with new spots in that medi…area. The doctors said they were surprised. I feel so mad that he has to go through this.They are talking about chemo/immunotherapy. If you have words of wisdom as we face an upcoming biopsy, and if insurance approves, a new PET scan, let me know. I’m out of words. I do a lot of listening and loving. I totally get your decision as this is truly the most frustrating situation ever. His was diagnosed as HPV positive, with no tumor of origin found. Out of nowhere. We are all in this together. Much love to you.

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