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?
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!