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