PAIN, LEMONS, AND LEMONADE

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This post is the first of a series of blogs which will be heartbreaking, educational (for patients and clinicians), emotional, sad, happy, and hopefully inspirational. Rather than using actual dates, I’m using Star Trek stardates to reflect the unknown celestial spaces where no Jeff has gone, and where together we may go.

Flashback: 1982 was the year I started as a young clinical oncology/hematology pharmacist at the Stratton VA Medical Center in Upstate NY, specifically Albany. I was tasked with integrating direct pharmacist patient care services into the Heme-Onc team, a very unique opportunity in the 80’s to prescribe chemotherapy, antiemetics (nausea meds), supportive medications, and yes, opioids and other analgesics.  Basically, all the comfort care meds were written by me which was an incredible learning opportunity for pharmacy and medical interns/residents. Most importantly, patients received the best therapeutic regimens that were preferably scientifically based, but in some cases based on experience with consideration to pharmacology, pharmacokinetics, drug interactions, deprescribing for palliative care patients, and much more. In short, it was an exciting time, especially in my mid-twenties when most pharmacists were practicing in the community setting. There were some unfortunate bumps in the road – a story for another day. But if you like horror stories, see Abuses Endangered Veterans in Cancer Drug Experiments., which eventually resulted in my professional migration to exclusively pain management.

Today, “stardate” 1622.1 is my first day of chemotherapy.  Newsflash to those that have not heard, on stardate 1422.0, I had an initial CT scan of my abdomen after experiencing severe cramping in my left lower abdominal quadrant. Four days later I met with a colorectal surgeon (still unknown if it was a tumor, and no pathology), then a week later was an unsuccessful colonoscopy. Unsuccessful how?  Many of you dread that Miralax/Dulcolax/oceans of fluid, and toilet time, right? Well, I did that – no response in three hours.  I was instructed to do it again – I did half of it and looked nine months pregnant. By this time, my lovely wife Robin called the doctor on call because with a possible tumor, at least in my mind, I was afraid I’d perforate my bowel, an outcome potentially worse than the alleged cancer itself. So, into the hospital I went (by ambulance), and the colonoscopy was switched to a sigmoidoscopy, because this newly discovered tumor was blocking me at the proximal rectum, a fancy way of saying where the descending colon meets the top of the rectum, or furthest from the anus. Next news, the sigmoidoscopy didn’t allow for much tumor or colonic lumen viewing because that ¾ inch tumor was blocking the scope.  Then I woke up in a bit of a drug stupor when I was told, “you’re on your way back to surgery so we can place a stent” – thank you Robin for making that decision.  That’s basically a small cage that is embedded into the colorectal wall that essentially pushes the tumor out of the way and opens the colorectal lumen for fecal matter to pass through. I’m like, okay, shoot me up with some more meds and let’s get this done.

Stardate 1518.0 thru 1524.0, 5-days of intense but targeted radiation treatment, in an attempt, to shrink the tumor prior to surgically removing it and the adjacent lymph nodes outside the colon wall.  Thankfully, all the multiple scans obtained while in the hospital showed no distal metastasis to the lungs or liver, both of which are the most common sites for colorectal cancer. How did I know?  Remember, my previous life was an oncology pharmacist until about stardate 0601.0 (June 2000).

Almost 40-years ago I had daily conversations with patients and their families about the advantages and disadvantages of chemo, what to consider in terms of opting in or out of treatment, defining confusing terms and statistics for them regarding benefits versus risks, percent survival, what they were giving up in terms of months to years of life, and what the trade off was if they chose chemo or investigational drugs versus no chemo with potential expanded life expectancy, and perhaps most importantly, their quality of life with or without treatments, side effects, combined radiation, diminished blood counts, etc, etc.

On stardate 1608.0, I was scheduled for surgery.  The intent was to first look in my peritoneal space (basically lower right abdominal quadrant), look around, create a temporary way to poop (aka ileostomy, basically create an opening just above the large intestine), then go after that nasty colorectal tumor and lymph nodes, get them the hell out of there, by cutting the colon, and reconnecting it.  The ileostomy would create a temporary “plumbing” diversion for the colon to heal, with a plan for reversal back to normal plumbing.  But that surgery abruptly ended when the surgeon saw a peritoneum filled with tumors.  What we all thought (or were hoping) was early stage 3 cancer, now became non-curative stage 4 cancer. So, when I woke up, no ileostomy bag (although I was “half in the bag”), but as I raised my hand upward, I felt a central line catheter, the road to your large capacity venous access for administering chemotherapy.  Before the surgeon came in, I was hoping it was the drugs, that this was all a dream, and that my new fate did not go from 90% cure to palliative chemo. I was unfortunately wrong about a bad dream. Truth be told, to this day I wake up hoping it is all a bad dream, and so do so many people I love.

So back to today, stardate 1622.1, here I sit on the first day of chemo in my cozy recliner surrounded by many others (socially distant of course), all who have their own stories and fate, different cancers, variable family/friend support systems, different financial access, and different outcomes in terms of cure versus palliation.

Why am I sharing this with all of you?  That’s a good question. It’s because in some ways my life has come full circle (a young, eventually middle-aged oncology pharmacist to a patient on the other side) and I feel that many of my experiences and feelings over the last few weeks will help younger and older clinicians reflect on their lives and how they care for their patients. I also believe I can help patients by my anticipated series of posts, especially since I can speak from the other side (no, not my grave!). I can share perspective from someone who has a catastrophic illness, and who although has limited pain at the moment by simply using OTC drugs, more likely than not I will eventually require opioids – HOW IRONIC. More to come in later posts.

Over the last 8 weeks as all this unraveled, I have seen all of my 4 children who live various places around the US (except one is nearby) and their spouses for incredible amounts of time. All of them have put their lives on hold to support daddy, papa, life partner in good and bad times, sickness and health, just like the vows I made with my wife about 40 years ago. They flew and/or drove multiple times into Albany.  My neighbors, friends (really my extended family), professional colleagues (also extended family) have called, texted, just showed up, sent cards, jokes, and all kinds of encouragement, and for that I am eternally (possibly a bit shorter these days) grateful. The outpouring from people I haven’t heard from in decades was equally endearing and heartwarming, both to me and to my wife. As a patient, I am so grateful. And considering the circumstances, I do consider myself one of the luckiest men in the world that got dealt one really bad hand of cards. As a professional I feel badly for my patients that may not have this support, and as clinicians we all have to be better at understanding their misfortune, listening intently, and referring them to behavioral health and clergy experts that can help soften that void.

Pain, Lemons, and Lemonade:
I intend to write another blog that explains my title choice. But for now, please know, I plan to stick around for a while because there are too many people I love, those I want to mentor, and a lot of unturned stones I want to shove off the cliff.
I’m not bitter;
I’m not depressed;
I’m not angry;
I’m less frustrated about the small stuff than I was 8 weeks ago.

But I will eventually share the emotions I do feel, which mostly revolve around love, appreciation, and pain. That pain includes emotions and thoughts that do fly around in my head and how I’ve dealt with them.  I’ll write about the stress, the tears, excitement and the planning for those I must eventually leave behind.

So in closing today, just know that future “lemonade” blogs will be focusing on my progress and what I’ve learned as a patient, what clinicians that care for patients can never know unless they are a patient, and how it can help you help them. As the weeks and months move forward, there will be emphasis on emotional and physical pain and how they are intertwined and equally important.  If I eventually end up on opioids, these writings will be a testament to all of you chronic non-cancer and cancer pain sufferers that do in fact require long-term opioid therapy and who can function mentally and physically while properly monitored. Seriously, could I write these things if I were narcotized?

And finally, it is with love and compassion that I thank all my wonderful family, cling on to every moment with my wife, children, grandchildren, father, in-laws, brother, sister, and all family members, colleagues, and friends.  Together you are all the Earth heating my energy within the fiery core of our planet. As you can see, I am still working, which many of my colleagues well know. This horrible situation is not unlike my mantra in life; when life throws you lemons, get off your ass and make lemonade, especially if you have a chance to help others that complete you!

Feel free to share stories and comments! Cheers, Dr. Jeff Fudin 

 

 

50 thoughts on “PAIN, LEMONS, AND LEMONADE

  1. Jeff, I’ve been in denial about this and avoided the blog until now. Childish, I know, but now that I’ve read it, I cherish your positivity that is so you! From the first day I trained with you, it was that positivity and enthusiasm that made me fall in love with pain management and want to invest more of myself to be like you. Thank you for taking the time to continue to teach us as you move through this dark chapter.

  2. Jeff
    Thanks for sharing your thoughts. Carol shared this with me. Sending blessings, prayers and peace for you and your family.

  3. I always remember your kindness and incredible willingness to share your knowledge. You have been a true pioneer in the field of pharmacological management of pain, highly respected and admired. I send you a big flash of positive energy from the West Palm Beach VA where you left your mark with your teachings. Stay positive my friend!

  4. Thinking of you and am so grateful that you are writing from both sides, as a chemo expert and pain specialist and as a patient. What you are doing takes courage and is so very necessary though I wish this was not happening to you. As a caretaker for parents who passed from cancer and with a loved one who is battling addiction, I have so much to learn from your experience and wisdom. Thank you Jeff.

  5. Jeff,
    You’re an inspiration! Working with you was really great… your knowledge and expertise were invaluable to pt care, your work ethic and your kindness to others second to none. Our thoughts and prayers are with you.
    Lorilyn and Doug

    1. 🙂 Thank you both. Always a joy to catch up with you. I’m still working for now and think of our patient and “political” conversations often. Enjoy the 4th!

  6. Jeff,
    As a colleague who has watched and admired your career throughout the years, I am praying for you and your family during this terribly difficult time. Your spirit, optimism, spirituality and positive outlook (as expressed in your blog and life’s work) will Shepard you through. B”H. You are a major thought leader in our field and your compassionate and thoughtful contributions to your patients and scholarly endeavors have enhanced the lives of many. Wishing you the best. — mark

  7. What a powerful story!
    You have shared an import journey that so many of us take but so few will understand. It is amazing that our prospective on life can change as our life is flooded with lemons. It is this type of journey that makes us stop and appreciate how fragile life can be. Yet you found the joy that so many will never take time to see; the love of family and friends. All the best to you on your travels through one of life’s most difficult journeys. Know you are not alone!

  8. Hi Jeff, just a note to say my prayers and thoughts are with you. We all had great times watching our girls grow up playing sports. You have raised a great family to be around you at this time. Keep up the good fight. Davie

  9. Jeff,
    As always, you amaze me. I’m sorry this cancer has touched you, such an amazing individual and soul. I will continue to pray for you and your family on your journey. I continue to be amazed that you can turn this into yet another educational experience for others. Something that you excel at and we here at Albany would not be where we are today without having had you with us. Thank you for all you have done (I know I’ve said that before), and thank you for all your smiles and laughter that you brought with you along that journey….

  10. Beautifully written, Dr. Fudin. This post alone was “heartbreaking, educational, emotional, sad, happy, and DEFINITELY inspirational.” Thinking about you and your family. Thank you for sharing.

  11. I’m so sorry you are on this journey! Thank you for sharing your experiences and thoughts with your familiar humor. You and your family are in my prayers.

  12. So very sad to learn of your situation and the challenges you have ahead. You have been a great source of information, education, and even prior to reading this latest blog, an inspiration. It is very hard to ascertain the character of one you have never met personally but in your case I’ve always felt you were all about compassion and integrity. It took courage to write this blog and I’m happy you chose to do so. I hope you find peace and solace in writing about this latest life experience. You have touched so many lives in a very positive way. I look forward to future blogs, especially those expressing a “lemons to lemonade” perspective as this is how I’ve come to know your attitude. Take it one round at a time adjusting along the way while winning as many as you can throughout this fight. Keep on keeping on.

  13. Jeff,

    That post is beautifully, evocatively written. Thanks for putting it out there to share. I’ve had a number of medical problems in the past 2 years, it is humbling and instructive to see things from the other side. Good luck on your journey.

  14. Jeff, I have admired you, your family and neighborhood for years! I always love seeing you walking your dogs or riding your bike around town, always with a smile on your face. Sending good vibes your way ❤️

  15. Your continued willingness to share and contribute to the medical field makes you the “you” that we all love, admire, and respect, and now, most of all, support!

  16. Thank you for sharing and for reminding us what is truly the most important part of life- relationships, family and supporting others. Thank you.

  17. Hello Jeff. This is your ” old” neighbor and one of the many friends who joined you in Friday night driveway cocktail hours, as our children played in the neighborhood. You were always a wonderful neighbor , sharing great big smiles as we passed by walking our dogs, However, I wanted to share a memory that makes me eternally grateful for you ” being you”. I am sure you recall establishing a jazz band while our boys were quite young. For most of the boys, this was a fun gathering. But for my son John, it was much more. As you know Jeff, his Dad had recently passed. Like all children , they never want to be different than the rest of their friends and this horrible circumstance certailly made my boys stand out. However , that adorable jazz band made John feel ” cool” again and a chance to just be one of the guys. For giving John that peace, you will always hold a special place in my heart. So when possible, enjoy each day my friend, continue to share that infectious smile and savor the love that surrounds you, for none of us know what tomorrow brings.

    1. Hope, That’s a beautiful post. Please reach out to Becky who I believe has some pics of that band. I’d love to include it on here, my next post, or somewhere on the series of blogs. If you don’t have her contact number, please DM me. xoxo

  18. So sorry to hear about your news. I do understand that the roller coaster ride is real.

    I read this morning and my reply was missing. I am sitting here this morning on the second day post op from my prostate cancer surgery. I was blown away by the story. My Foley inconveniences were suddenly not important. Pleural effusion a nuisance.

    My kids were home for Father’s Day and appreciated the time together.
    I look forward to hearing about a turn for the best from you. I have loved you sharing your pictures and greatest gift from Jeff the father and grandfather.

    I do understand that the body is temporary and the gift of sharing is one we have with each other every day.

    I love the impact you have made on my life and so many people.

  19. If anybody can beat this cancer it’s my little brother Jeffrey. He is the sweetest, kindest, and gentlest person I know and he has a heart of gold. He is very smart too!

  20. Why am I not surprised by your willingness to share you journey as you have shared so much with family, friends, patients and colleagues all these years. You have always been available and shared so much of yourself professionally, and socially and now you are sharing something so personal, so visceral.
    I know the strength and love of your family, friends and colleagues
    I know that as a community of Fudin Fans we will imbibe your lemonade and all be better people .

  21. Beautifully written Jeff. You are in our thoughts and prayers. I look forward to future large glasses of lemonade!

  22. Jeff,
    Ever since I met you in that coffee shop to review the slides, I knew this guy smart, classy, energetic, and somebody to admire.

  23. Dear Jeff,

    Wow, what a moving story of what is happening in your life. I will be praying for you and your family. I recently discovered a website called Chris Beats Cancer who has a similar story to yours. If you are so inclined check him out. You will be amazed.

    Best Wishes to You and Your family.

  24. Great Blog Dr. Jeff ! While I’m very sorry for the diagnoses, I just know that you will have an outcome which will allow you to have QOL. And might I also say that was a wonderful Presentation you gave to the FDA on June 7th ! I followed it perfectly and I think those just learning the truth were a little taken aback. You explained everything to the letter. I wish there could be more Drs like you.

  25. We’re broken-hearted for you, Robin and your wonderful children. Larry and I send our love and prayers.

  26. Jeff- you are a remarkable person. We can all learn from your grace and humor and your ability to focus on the here and now despite the hand you’ve been dealt. The lives of your friends and family are richer for it. What a gift you give them. Hugs to you and Robin. May each new day bring you strength and the chance to know how very much you are loved.
    Sue (Hanretta)

  27. Thank you for sharing your experiences with us all. I look up to you for all your advocacy. I hope your life is long because a cure is found. You certainly have the attitude and support to make it.

  28. Classic Jeff, still working! I’ve never met anyone who works so much! A lifelong role model, who makes everyone in his orbit a better person for it. Thanks for continuing to be such a great role model and sharing what you’re thinking with the rest of us.

  29. I’m sad to learn of this news and of your diagnosis, but thankful your are open to share your journey. 12 years ago, I was beside my fiance who battled the same diagnosis at 36 years old. Please continue to keep positive, be open to alternative treatments, and keep living your life to its fullest (and then some)!
    -Francine

  30. Positive thoughts are truly with you Jeff, and Robin and your whole family…your journey is one that I will plan to read about and to both silently and in written words, encourage your fighting spirit and to keep your crazy sense of humor through it all…blessings and just general good stuff always!!

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