LEMONADE, PAIN, PERSEVERATION, AND PERSISTENCE

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Today’s post will include updates for the week, sprinkled with lessons for patients and clinicians. I had originally planned to post two weeks from the last post, but too much has happened and I’m afraid the next one will be too long.

PAIN: It’s been an eventful week since my last post. Let’s start with PAIN. I’ve treated pain patients for almost four decades.  There are all sorts of validated tools, many of which were studied and written by very close friends of mine (all of whom have been in constant contact with me – love you all!!!). Notwithstanding, there is no blood marker that separates emotional pain from physical pain, and both of them together make the other worse. I don’t have horrible physical pain, but I do find myself having to take a non-steroidal anti-inflammatory and/or acetaminophen regularly for belly pain – not sure if it’s from tumors, the minor surgery (that never really happened beyond looking around), the radiation, breakdown of tumor from chemo, or whatever.

PERSEVERATION: “Perseveration is defined as the tendency of an idea to stick in your mind or recur, or getting stuck on something mentally and not being able to shift gears” For me the emotional pain is worse at night when I first go to bed. This is because I’m less occupied and think about the sadness of my situation, and equally important, how taxing it has been to my family and all the people I know and love – that is emotionally very hurtful, and crying with belly pain doesn’t help, especially since I try to take my NSAID or acetaminophen (APAP) as close to bedtime as possible (more on that below).  Awakening in the morning is good and bad; good because I’m here for another day, bad because I look around the room and gaze at “good time” photos of my wife Robin, my children pre and early teens (Jason playing saxophone duets with me at a BBQ, Hannah playing the drums, various activities with Sarah and Shirah, all their spouses, my grandchildren, and the dogs. I get tearful thinking that I may not be here to enjoy these same things a second time around with the grandchildren (school concerts, sports activities, etc.) together with my wife, or to watch them grow into teens and adults.  It hurts – it hurts more than physical pain, and all the NSAIDs in the world won’t make that go away. But, the last few days I have successfully been able to flip this a bit and be grateful that in my 62 years of life so far, I really am the luckiest man in the world – I have four successful and financially stable children, I love all of their spouses, I have a four beautiful healthy grandchildren and at least one (maybe more) in the oven. And it comforts me to know all of them are happy and will have great and successful productive lives with or without me. Dwelling over what I may miss is a waste of energy and tears (but I realize it’s okay), however, it won’t change anything. For nighttime now, I try to read all the wonderful comments, notes, emails, etc. people keep sending me, and although it can be emotional, it’s all great stuff!

Lesson: Many of my patients have told me over the years that they prefer short-acting pain NSAIDs rather than long-acting because they like to know how the pain is when the medication wears off.  I’ve often told them it isn’t worth suffering or decreased activity when we can use something that lasts 12 or 24 hours. I heard them, but maybe didn’t listen or understand.  Now I do! I want to know if the pain in my belly is getting better, and I can’t know that until at least the end of a dosing cycle – now I get it. The other thing that healthcare providers must consider, especially for cancer patients that have a central IV catheter, is that chronic around the clock dosing of NSAIDs or acetaminophen will blunt the fever curve which could possibly result in missing a serious infection until its too far out of control. Sometimes I take ibuprofen and reduce the dose because its activity can be synergized by adding acetaminophen – that is rational polypharmacy.  In fact, there is an Advil Dual Action product that contains both ibuprofen and acetaminophen. 

6/24: I spoke to my Nurse Practitioner (NP) who informed me that my bloodwork showed my hemoglobin and iron are low.  No wonder I’m tired sometimes – I mean really, anybody that knows me also knows that sleep and Jeff Fudin are never included in the same sentence. We spoke about options, one of which is oral iron tablets. I asked her about IV iron, although years ago when I did heme/onc, that was quite a lengthy ordeal.  She told me about a newer IV iron option which I think could be a great option. We also spoke about possible blood transfusion. Her day off was “tomorrow”.

Lesson: The NP and I discussed my concern that oral iron is constipating. I learned something about newer formulations of IV iron. I could have looked it up (and I will), but it was nice to hear it from her and learn.  I’m already on Miralax to keep stools soft because of the implanted rectal stent. She suggested ferrous gluconate which is generally better on the stomach.  I discussed with her the option of oral ferrous fumarate which is often even less challenging for the stomach and better absorbed. In either case, we discussed it, she heard me, she listened, she was respectful, and we will discuss options after next blood draw. 

6/25: I called the oncology office about various issues. Some included (1) cause for bloating and a (2) possible ultrasound, (3) possibility of coming in for IV hydration because I felt dehydrated (hard to drink fluids when you feel 9 months pregnant, and others.  Now I’m not saying I was any different when working in my own clinic, but here’s how it goes.  Jeff calls the receptionist, receptionist contacts the nurse, the nurse calls Jeff, the nurse then says she’ll speak with the doctor, the nurse calls back and says the doctor on call says to take senna and docusate for the bloating and if pain gets worse during the weekend, go to the ER. I reminded her that I’m pooping fine, and none of the other issues were even discussed. Not a single issue was addressed.

Lessons: Listen to the patient. Think about the impracticality of multiple phone calls. Respect the patient’s input and think about if you would want to sit 6-8 hours in an ER for nonspecific symptoms that wouldn’t likely be addressed in an ER anyway, except for the hydration (that’s a money maker for the ER!). A timely response was in order because in a few days I need my IV port replaced and I wanted to be sure to get hydration, or if needed, IV iron or a blood transfusion prior to that.
Think about this from a patient perspective (I’m a pharmacist, so it is a bit different). I’m on chemo (oxaliplatin causes constipation, 5-FU causes diarrhea); iron causes constipation; I’m on Miralax (an osmotic diuretic) to prevent constipation; I was just told to take senna (a stimulant laxative) and docusate (a stool softener). Imagine a patient at home getting these mixed messages, the frustration and misdirection, all an impossible situation for someone who has already been beaten down physically and emotionally. As providers we need to be coaches, educators, and advocates for our patients!

6/28: My neighbor came over and brought me Lourdes Holy Water. I was brought up Jewish and all of my children were Bar/Bat Mitzvahed.  I feel blessed to have friends/family from all faiths praying for me and I was happy that (BG) placed the Holy Water on me, both in a cross and a star of David. Then there’s all my other friends, some of whom are Hindu, Muslim, and Mormon.  Listen, we are all family and every religion preaches the same thing when you get right down to it. I’m thrilled to have this spiritual support from everyone!

6/29: Today was my scheduled central venous IV port replacement (aka Port-a-cath) that I discussed in a previous post.  This is the IV access device that is implanted just beneath the skin and dumps IV medications directly into the heart atrium (an IV drug users dream really, but fortunately that has not made my expanding medical problem list). I decided to type this paragraph first before even writing this blog post for this week. Why? Well, I just got out of surgery under “conscious sedation”. During that procedure, I received IV fentanyl and midazolam at proper doses to keep me comfortable but awake. I spoke with the team the entire time, and crazy as it sounds, it was quite enjoyable, as we exchanged stories from medical cases and common colleagues over the years. The procedure involved removing the old port from my left clavicle area and putting a new one on the right side. The wonderful nurse practitioner heard what I said and listened. I knew I was pretty dehydrated (as noted above when I informed my oncology group – hmmm, they heard but didn’t listen). The plan was to access my vein peripherally (in the arm), which I was not in favor of because the last time I was dehydrated just prior to surgery it took three nurses and 7 sticks.  My suggestion was that since the current port worked fine for infusions and saline flushed INTO my body, but was sluggish when drawing blood OUT, why not give me a liter of fluid thru the old port (no arm dart board needed), place the new port on the opposite side (which was the plan anyway), then disconnect the infusion and run it thru the new port, and then remove the old port.  Bingo!
Lesson: She heard, she listened, and she wholeheartedly agreed.  What a gem! I’m sensing a pattern here.  NP’s seem to hear and to listen. And, guess what, people can put together cognitive thoughts while on opioids – this surprised me, because I’m not opioid tolerant and there wasn’t one typo.  Imagine how productive a chronic pain patient requiring long-term opioid therapy could be if they were slowly escalated and tolerant to opioids?

Special calls:

I received a call from a friend/colleague (CH) from the Midwest that I’ve known for decades. He and two other close colleagues (JR, LK) that I’ve known over the same timespan (also in the Midwest) want to come visit, just to hang out. Also there was some discussion about a very exciting dedication (more to come later). One of them toasted me earlier in the week with vodka lemonade – thank you for providing me a picture for today’s post.

My second graduate resident wants to come from California, and others from throughout the US want to come too from every corner of the US (see you soon JG, MS, KZ, and others).

I spoke with a fraternity brother (actually, my Phi delta Chi “big brother” from pharmacy school) who I’ve not spoken to in years, although we do send holiday cards and stay updated somewhat via social media. I’m reminded of our fraternity credo which is applicable here – I’ll share that in my conclusions.

My brother from another mother, Dr. Jeff GUDIN together with Practical Pain Management interviewed me today and we discussed what it’s like being on the other side (No, not dead.  The other side like a patient! If I find a way to communicate on the other side, you’ll hear from me – remember Fudin doesn’t sleep much.) You can listen to that Podcast HERE.

Literally five minutes ago I heard back from my local oncology office to discuss findings of my ultrasound – NO CHANGES from last imaging, and could be tumor necrosis from radiation and chemo (that’s good). Then just one minute ago the same provider called back and said “I just spoke with the oncologist and she insisted I call back to double check you aren’t having pain and to go to the ER if you have any medical problems or bowel issues during the weekend!

PERSISTENCE and Lesson: These messages were delivered by the Physician Assistant after speaking with the oncologist. I’m loving these physician extenders!

Conclusion: My neighbors have been wonderful – visiting, meals, all kinds of support and love!  Thank you! I am stunned by the number of messages received from people who have reminded me of something I said or did 20 or more years ago (luckily they were all good things) that impacted their lives. These notes often bring tears to my eyes because I had no idea of the impact certain things I said or did had on them.

Lesson: For all my readers, tell people what they said or did that inspired you or that something had a negative impact on your life.  There is no point in reminiscing at a funeral 20 years from now, and saying “I wish I had told…”. So this is another lucky thing for me – I get to hear these things. Tell people you love them, they inspired you, they were hurtful, and you will have an actionable impact on their life, and you will feel better too.

One of my colleagues this week (thank you Pam) reminded me of the old adage, it’s not the amount of days in your life but the amount of life in your days. As my fraternity credo goes, “alterum alterius auxilio eget”, each needs the help of the other.  That could never ring truer for me. You have all been there to help me, and for that too I am the luckiest man in the world. I’ll keep drinking lemonade and hope for many more years of life. I’ll be back soon! Happy 4th of July!

Comments as always are welcomed with enthusiasm!

21 thoughts on “LEMONADE, PAIN, PERSEVERATION, AND PERSISTENCE

  1. Can’t wait to see you next week. You’ve always been an inspiration to me, as well as a dearest friend. The way that you’re sharing this journey brings me simultaneous tears and laughter. To be discussed soon. Love you, buddy.

  2. Jeff,
    Very inspiring! As you are 62 years old, does this ( what sounds like sudden) presentation of Stage 4 cancer change your perspective of colon cancer screening practices? Of course I have no idea of your past screenings ( type or frequency) nor if there were milder symptoms prior to the severe cramping…..wondering if you had optimal screening and if that didn’t work out , was the first thing that came to my mind as I read your blog – I apologize if this was discussed elsewhere and I missed it

    1. Jeanette, This is a fair question. I had no previous symptoms. My last screen, four years ago, I opted for Cologuard because of the convenience and because I had no risk factors and was a picture of health. Does it change my perspective? Hell yes!!! I have no way of knowing whether this would have been detected with a traditional colonoscopy, but if I had to do it all over again, I would have a colonoscopy. If this whole ordeal saves the lives of my children and grandchildren by early colonoscopy, then I’m glad it happened to me.

      1. Jeffrey,
        I am a NP/ Pain Specialist and your articles have been (mandatory) reading for close to 20 years. Thank you for answering (Jeanette’s) question,I may need to re-evaluate my screening history now! Past Colonoscopy (54) but then opted for Cologuard about 3 yrs ago (age 60, “convenience!”. All good. but, familial history of colon cancer maternal (grandfather) and mother with Ovarian, which happened to be diagnosed when she was having her (routine) Colonoscopy. I think I may call PCP and have colonoscopy scheduled!
        (Hasidic Prayer) which I love; “I know the Lord will help – but help me, Lord, until You help”.

        1. Thank you for your message Maripat! GET THE COLONOSCOPY! I don’t know if it would have mattered for me, but I had no risk factors and I’ll wonder for the rest of my days whether it would have prevented all this. Good news, all of my children and grandchildren will be getting theirs early and frequently. First up, my son at 35! 🙂

  3. The best part of reading these is that in some wild way, I’m hearing it in your voice in my head. It’s as if you are reading it to me. Your ability to share your journey with us will likely have impact in ways we don’t even realize at this moment. Keep the faith, keep the strength, keep the spirit that is truly Fudin.

  4. Jeff, I believe that blessed Holy Water is working. Your presence is felt every day in our lives and will continue. Keep the faith in your heart, your soul, your head. in all that you do and with every step you take.

    Have a beautiful weekend with your family. ❤️
    Becky

  5. Good to see that things are going “OK”, not perfect, but not harrowing either. When I read about your hydration problem I thought of my friend whose husband, Joe, has Huntington’s Chorea. First a little back ground on him, years ago he had a horrible back pain issue; and during surgery they nicked a nerve to the bladder – consequence: catheter. When he developed HC, he was in his mid 60’s, had an identical twin brother, and other siblings. No one in his family was diagnosed with HC. His identical twin, Jack, ended up dying of *they thought) complications from radiation for lymphoma in his mid twenties. They thought his thinking problems were a result of carotid arteries being fried from the radiation and he ultimately passed away. In the meantime Joe started developing symptoms similar to Jack’s. He had a problem with a dropped foot from the back surgery and when he visited a doctor about this issue she suggested he needed to see a neurologist at Oregon Health and Science University (OHSU), which he did and that is when he got his HC diagnosis (he has two children a girl and a boy and both of them have the gene). Meanwhile Joe ends up in the hospital because of an infection which turned into sepsis which resulted in Joe’s colon being removed. Somehow, by the grace of God, he made it out of the hospital and home to Linda. Now he has both a catheter and a bag. He is now 77. Linda worked in a dermatology clinic for 40+ years, did all of the microscope work, assisted in surgeries, and was very much like a PA. Joe got one urinary infection after the other which meant transport to ER. She discussed this with Joe’s doctor and suggested they put him on a low dose antibiotic, which they did and he does pretty well with this idea. Other problems led to Joe being dehydrated frequently, which led him back to the hospital. So Linda got her own saline and administered it to Joe at home – stopped the dehydration issue, until they changed insurances. Medicare will not pay for those supplies and the saline bag costs $35 a day a $1000 month. So, she orders just a few and keeps them available, but on other days Joe drinks two quarts of Gator Ade and can get by for several days before she gives him the IV. So, number 1, you could get supplies and administer your own hydration; 2. you could fill in with Gator Ade. This information may not help at all, but I just wanted you to know about Linda’s solution. Might come in handy some day.

    Hope your week-end is filled with celebration. Good for the soul.

    Rae

  6. Jeff Your message is so powerful I share it with Both Rhea and Toby as Larry’s illness and death impacted the directions their lives have taken They see your insight expressing what he was unable to and so very powerful lessons to providers
    I’m going to be in Albany the week of July 12 staying with Marge and Dave I hope you will be up for a visit
    C

    1. Thank you Cheri. It’s heartwarming to know your “children” have benefited. Lots of visitors that week but we do have one day unspoken for. Would love to see you. Just text or call and we’ll nail it down.

  7. Jeff – thank you for continuing to share your journey and the wisdom you have gained along the way. Praying for you daily and sending love from Chicago!

  8. Jeff –your stories are so inspiring. Thanks for telling your story. Hang in there and continue to share. Enjoy your life too! love Linda (ron’s sister)

  9. As someone in the health care field I LOVE reading these posts as I am learning to be a better provider for my patients. As someone who is the mother of one of your daughter’s close friends I regret not getting to know you all of these years. My loss. But looking forward to many many more lessons from you.

  10. Wow,what can I say.You make me laugh and cry at the same time.There will only be one saxyjman on this earth.I am just glad I had a little to do with it and I hope these messages and blogs never end because mankind needs more Jeffrey’s around to explain to them the right way and some wrong ways that are going on.

  11. I love reading your journey. You are very blessed to have received the Loudes Holy water. I only sent a Mass card.
    I was speaking to some colleagues at lunch today about you. I forgot that my friend Lois Worthmanns daughter Lindsey Worthmann had you as a professor at WNEC. Lindsey said to relay her thoughts and best wishes and prayers to you. See it is a small world!!
    Sounds like you are going to be quite busy with visitors! You have a great support circle ! I should get the old man up to Albany to see you also but don’t want to be too intrusive. Will be donating money for our local relay for life in your honor. I think it’s virtual this year too. Keep your positive attitude going. We are all rooting for you!
    Love, Ann and Steve

  12. Thank you so much for the update! I have been thinking a lot about you and your family. You have made such a difference in the lives of so many health care providers and their patients! I am sending lots of good thoughts and wishes to Delmar!

  13. Live life in the moment. Do what you’re doing and move through the stages of grief and loss. Makes the pain less painful, the enjoyable moments more enjoyable. I’m trying not to live my life through my eyelids. And remember I love you as I move into year four of my journey.

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