Today I’m back in the saddle (the chemo infusion lounge chair) which is my typical day every other week for writing lemonade posts of my journey. These last two weeks without a doubt have been the most fulfilling, optimistic, encouraging, and full of life and love than anything I’ve experienced since the start of COVID-19, and perhaps longer. You’re probably thinking, what?!?!, the guy has one foot in the grave and one on a banana peel “why is he partying?” – think again! I’m betting on life, and in this post, you’ll see why these were two great weeks and of course, as usual, there will be lessons for all! Because so much has happened since my last post and I have so much to share, I am including far more hyperlinks herein for you to see for yourself why it’s important to live for ONE more day, ONE more month, ONE year, or a decade! So please click on these and smile with me! You will see that rather than dwelling on death, it’s better to spend time living life, laugh every day, and experience the nirvana of nature and love all around. There is also another lesson buried there – if you have estranged family or friends, GET PAST IT, mend your differences, agree to disagree, and figure it out now when you’re healthy and of sound mind (thank you Ben and Amy).
It was mid-May that my journey really started to unfold pretty much in a downward swirl into the abyss. It was then that family and friends sprung into action and visited Robin (my wife) and I with meals, compassion, company, chores, etc. When people asked, “is there anything I can do” and you say, “we’re good for now” and then they ignore you and do it anyway, that is what I call love and compassion! It was around Mother’s Day when all my kids and grandchildren dropped their lives and came to town with their spouses all of whom I’m claiming as my own (sorry in-laws, you have to share your kids with me cause I’m playing the “C-card” on their attention and love these days). They wanted to do something, and I hadn’t totally let the cat out of the bag yet in terms of sharing my situation with the world. It was obvious to me then that palliative chemo was not a decision for me alone, but one that affects all persons I love and cherish, that it could extend time with family and friends (let’s not be selfish – I learned from a smart Nurse Practitioner [MB] many years ago that “it’s not about me”, and so I’m going to bet on life (more on that below). With my wife and kids surrounding me, I decided, no pity party. Instead, we put our heads together and decided on a CELEBRATION OF LIFE PARTY (album linked towards the end – don’t want to distract you yet)! The kids took over and did everything, including bring Dinosaur BBQ to us, arranging beverages, set-up, clean-up, and more. And that is how this blog post will unfold. Chemo started on June 22 and my first blog post reflects my thoughts and various lessons for patients and healthcare providers at the time.
So, let’s start with my last chemo treatment 2-weeks ago beginning on Tuesday. My best day following chemo is usually day 2 when I’m home with my lemon infuser containing 5-fluorouricil (5-FU). You’ll recall in fact that on day 2, my wife and I usually do yard work and cut the lawn together. On my previous chemo day 2, true to form, I took to the lawn, but instead of a self-propelled push mower, I sported the cowboy hat and lawn tractor. Why you ask? Well, it seems that some people just couldn’t handle that Dead Man Walking post with the fanny pack bulge in my shorts (maybe they prescribed the wrong type of steroid – see below), so I decided to go the lawn tractor route and a cowboy hat to keep my infuser concealed from the elements. This may also be contentious because there are those that “think my tractor’s sexy”, as the Kenny Chesney song goes.
July 21 was chemo cycle 3, day 2, and I was finally scheduled to receive IV Fe tomorrow on day 3. At 7:30PM I could hardly move. I call it “manemia”, anemia after mania from dexamethasone (a lesson on steroids below) received on day 1, followed by lots of work in an anemic state on day 2 equals crash on day three. Thank you, Robin for getting me to bed early.
Days 3 and 4, Zzzzz. Hopefully iron will kick in, but it’s still incredibly difficult to eat because of extreme belly bloating (lessons below).
ON TO FUN and LIVING LIFE!
We planned a family week at my daughter/husband’s beach home in Bay Head NJ. I was a bit anxious about the trip because I was still having problems eating, had to rest for 1-2 hours after lunch and dinner from bloating, was still anemic with low Hgb (hemoglobin), Hct (hematocrit), and iron (Fe), and had difficulty walking for more than a few blocks due to fatigue and breathing. Because of these issues, I felt the need to prepare and nip it in the bud. So, at my last meeting with Dr. Onc, I asked to be placed on dexamethasone, a steroid often used for palliation of various symptoms including inflammatory pain, energy, and a general feeling of wellbeing. Admittedly, there are risks and benefits. Dr. Onc seemed a bit reluctant, but agreed to a 4-day supply. Now I’m thinking, WHAT!?!?, just four days? I’m going to the beach and want to play with my grandchildren, eat, drink (not alcohol – well maybe a few sips), and be the happy papa without having to be so careful about small bits of foods and rests after each bite of a shrimp. But I’m like, okay stay cool, accept the 4-day RX and figure it out. The standard dose prescribed was dexamethasone 4mg PO BID (that’s medical talk for orally twice daily). I hadn’t started it yet, but the IV Fe supplement was on board and did improve my energy level and breathlessness when walking. Also, perhaps the chemo at this point was starting to show benefit. So, on 7/24 on to Bay Head NJ, and I actually hit some whiffle balls with Andrew (my daughter Sarah’s husband, and master of music playlist creation for upcoming life celebration party, and zoning out here to the music with finger snaps) and his brother Mike. First real exercise in 3 months other than some walks. I climbed a kids mountain tower, and kissed four grandchildren goodnight. That is what palliative chemo is about.
And by the way, my Hgb and Hct were both very much improved with today’s bloodwork and I received another IV Fe infusion today following chemo. So, I think I’m headed in the right direction (up instead of 6-feet under).
I still had two days until I was willing to start the dexamethasone because the family was headed north to our upstate NY home for the big life celebration party on Saturday. I was pacing myself for the “good feeling” from dexamethasone and wanted a couple of days for dose finding based on weight, tolerability, and efficacy – the plan was to be totally engaged by next Saturday but to be pretty functional up to and including Thursday if possible.
That afternoon prior to arrival of my Utah daughter and her husband Kris, we headed to Point Pleasant Amusement Park. I had so much fun on rides with the grandchildren and of course their parents. If there’s any doubt in your mind whether palliative chemo is worth it, just look at the photo above and the three generations of us dudes on the boardwalk. Maybe it wasn’t the best move to carry Aria all the way back to the car on my shoulders (totally wiped out this deconditioned cancer dude), but I want to be sure these sweeties remember me as a fun happy papa – totally worth that last ounce of energy for the night. And let’s not forget Penny below, who is looking up to Papa – shhh, I whispered in her ear while fighting back some tears, Penny, always look up to Papa and I’ll be watching even if you can’t see me someday.
It’s now Wednesday 7/28, one day left until I start the limited supply of dexamethasone (calm down, lesson on the way). Meanwhile, Fe seems to have given me a little kick start, and I took a 3.5 mile bike ride with my daughter Shirah in the morning, snuck back to the amusement park with my son Jason and my best little grandson buddy Jonah, while anticipating a rendezvous at the airport where my daughter Hannah and her husband Kris were flying in from Utah and meeting my Dad (will be 90 in two weeks) and his “wife” from Florida (Delta strain central). Don’t worry, all are vaccinated and we have a case of KN95’s. When we retuned from our sneak park visit, we got a pic of my Dad with the four generations Fudin dudes.
On Thursday, 7/29, I still had lots of bloating. Starting dexamethasone today in hopes it will significantly help with belly inflammation and energy for our “Thanksgiving in July” at the Fudin home with our usual family, plus some close neighbors.
LESSONS LEARNED: Prior to the dexamethasone, I would often have to lie down for 1-2 hours after meals, even with small portions. I ended up taking less dexamethasone at a dose of 3-4mg daily after the first two days because I was feeling great but a bit “manic”. My belly girth in less than a week has been reduced to about a third of the size, almost no feeling of bloating, can eat full meals and take in more fluids and actually felt excellent on 3-4mg each morning. Also, I have had several formed bowel movements per day and it seems to me that perhaps I had a lot of built up stool either from inflammation or another reason. That of course just means I was full of sh**.
There are benefits and risks to taking steroids both long and short term. The likelihood for me getting long-term risks are pretty low, although I am betting on life, so the longer I live, the higher the likelihood of long-term risks. Very generally, short term, risks are immunosuppression (not particularly desirable when receiving immunosuppressive chemo), elevated sugar and blood pressure, fluid retention (but not with dex), and increased risk of gastrointestinal bleed. Other than immunosuppression, it is my opinion that the other short-term toxicities are low. Long term, we’re talking about osteoporosis and Cushing’s Syndrome.
LESSONS: There are several kinds of steroids. They are classified into five groups which include glucocorticoids, mineralocorticoids, androgens, estrogens and progestogens. The latter three are not in the picture here because those involve various sex-related hormones. The other two types are grouped into two classes known as corticosteroids (produced in the adrenal cortex, hence cortico-). The sex steroids are produced in the gonads or placenta (a lot of these in my future- more to come- hint, hint).
When considering the corticosteroids, they are broken down further based on their activities relevant to glucocorticoid or mineralocorticoid. You will see from the chart below that dexamethasone is very potent (requires less dose for the same effect) and has ZERO mineralocorticoid activity, so compared to prednisone for example, no fluid retention or electrolyte problems. Perhaps some of my readers are more familiar with methylprednisolone, aka Medrol Dosepak, which has similar properties to prednisone. A direct link / reference to this chart is at https://www.timeofcare.com/steroid-conversion/. So the lesson here is that dexamethasone can help without some of the bothersome side effects we see with mineralocorticoid activity, and, I can stop taking around-the-clock acetaminophen and/or ibuprofen, both of which could be problematic in their own right. Acetaminophen is toxic to the liver, and with the boatload of chemo, I’d like to give my liver some rest. Ibuprofen of course has a risk of gastrointestinal bleed and kidney toxicity, the latter of which could also be problematic with certain chemo. Always good to have a pharmacist in your back pocket – my family is full of them, but when I need one, I just turn myself inside out. Anyway, maybe it’s becoming a little clearer why I wanted dexamethasone in NJ and before the family gathering in Upstate NY, as it has very potent anti-inflammatory activity compared to the others, and I’m thinking belly bloating, pain, and maybe a lot of it is poop that can’t move down due to inflammation (more to come – no, I mean the lesson, not the poop). Both my oncologists agree that perhaps short-term bursts for special occasions could be okay, but neither feels that dexamethasone should continue. I’m okay with that because they also feel that although dexamethasone played a major role in the “feel good” days, that the chemo is softening the tumors and that should sustain the wellness over time. For the record, and another learning point, if glucocorticoids are ever needed chronically for any condition, it’s safer to take them early in the morning and do one day on and one day off – this allows the adrenal glands to kick in on the off day and to produce cortisol.
|Steroid Agent||Equivalent Dose (mg)||Anti-inflammatory Potency||Mineralocorticoid Potency
|Duration of action (hours)|
|Hydrocortisone (cortisol)||20||1||1||8 to 12|
|Cortisone||25||0.8||0.8||8 to 12|
|Prednisone||5||4||0.6||12 to 36|
|Prednisolone||5||4||0.6||12 to 36|
|Methylprednisolone||4||5||0.25||12 to 36|
|Triamcinolone||4||5||0||12 to 36|
|Betamethasone||0.6||30||0||36 to 72|
|Dexamethasone||0.75||30||0||36 to 72|
|Fludrocortisone||–||0||125||12 to 36|
EXCITING NEWS FOR NJ
As of today I have four grandchildren. The oldest is Jonah my sweet little buddy. The other three little girl angels dancing in the sunshine are all two years old and within 7 months of each other in age. This family weekend my wife Robin and I learned that we have not one, but three more on the way that will be within 5 months of each other. Since I’m sworn to secrecy, I can’t say if 3 of my three daughters plus daughter-in-law (well really my fourth daughter if I’m being honest) are having one; or if one is having twins and another is having a single; or if all four are having 0.75 babies each. For certain, Sarah is not having triplets. Since I’ve confused you enough, I don’t think I gave away any secrets. But what this does say is that I seem to have more reasons each week to avoid this papa from the final pop off. The thought of having another 0.75 grandchildren per daughter makes me focus more on surviving than “earth diving”. Seriously, more reasons for “Stayin Alive”. These kids are “killing me”. Whoops, didn’t mean to say that, but with each pregnancy announcement I feel like I’m back working in a pharmacy rotating the stock – in this case it’s because I have to keep moving up my expiration date!
My wife and “daughter 4” Lindsey left the shore on Thursday, one day before me. So, I did a bedroom switcheroo and gave Kris and Hannah the larger room – Kris is a big boy and could use the larger bed! It was my first day of dexamethasone in the morning and a repeat dose in the afternoon. I woke up in the middle of the night feeling GREAT – no pain, no bloating, a sense of wellbeing, and I looked up, only to see the underside of the bunk bed in which I was now resting. For a split second, I thought, whoa, so relaxed, did it happen? Is this my coffin? But, it actually was comical in a morbid sort of way.
Earlier in the day a few adult saints showed up to our Upstate home. It seems that daughter Lindsey and wife Robin pitched in too. They were there, get this, to put up a 20’ x 20’ tent for the Celebration of Life party (Album linked below). It was brought by daughter and her spouse of my lifetime bestie since ninth grade – thanks Ron for sticking by me all these years! But before these saints put up the tent, they first cut the lawn and weed-whacked. You guys rock! And by the way, I caught you all on our webcam!
BETTING ON LIFE
My son Jason texts me each morning with his activity for the day and how much weight he has lost (he’s a wee bit overweight as the Scott’s would put it). I’m more than a wee bit underweight, so he gets a text back from me of my eating and activities and how much I gained. It seems to be working for both of us. Hopefully this bet will keep us both alive longer.
Then there’s the contest/bet with my soon to be 90 year old father (seen here with “wife” and Andrew). He is sharp as a tack and still gets around great. My contest with him is that I will not die before him, so the longer he lives, the longer I live. It’s incentivizes both of us to be around without dwelling on the ultimate outcome.
Then there’s the fourth generation little 4-year old Fudin buddy Jonah, Jason and Lindsey’s son (plus Penny). He keeps telling me, “I love you forever Papa”. He just loves to have fun with me. I can’t leave this little guy. I bet that pretty soon I’ll be able to constrain my emotions long enough to record audio for this self-reading book given to me by is mum, so that Jonah and Penny can hear me reading to them once I am watching them from the heavens.
And then there’s Anna. She’s so darn smart and remembers everything! She gives such great hugs! If only I could hold on for several years, I’m pretty sure she’d come up with a cure if I could convince her to go into medicine.
But let’s not forget “little Jeff” and Shirah’s daughter Aria. She’s the only one that lives local, so I get to see her all the time. Such a cutie and has smile that makes you melt, and an attitude that will sometimes make you run.
And our neighbors at the Celebration of Life party (FINALLY, THE PARTY PICS!) – what can I say. I can’t possibly hyperlink in all of these wonderful neighbors separately, so here’s my gift to you in an album. Thank you Bobby C for your photography skills! And another call out to Andrew for slipping “In the Mood” into the mix because he knew I couldn’t resist that dance seen here with Hannah. To be fair, it was my first dance with Sarah at her wedding, but she is a little too pregnant these days for flipping and twisting.
Another shout out goes to Joe and Deb C for bringing tequila (Patron) to the party. Here, my son Jason is toasting me with the crowd. The lessons learned here are that if you’re anemic and receiving chemo, and potentially dehydrated, it’s not a good idea to drink alcohol. Don’t worry though, my shot was 40 U.S. minims (I’ll let all you non-pharmacists figure out the volume). And also, never let a good Patron bottle go to waste – here’s the memorialization in a lamp.
How about a special callout to my “brother from another mother” Dr. Jeff GUDIN (here pictured are the three Jeffs including my son-in-law, all of us whom specialize in pain management), who “happened” to be in town and texted me that he was coming over. You may recognize Dr. Gudin from the Solonpas commercials on your TV. I’ve been telling my family about him for years. It’s sort of like that movie Big Fish, where this guy tells his family about all purported tall tales of people he met throughout his life. Although nobody believed these stories of various people, they all showed up at his funeral – get ready folks, GUDIN is just the start. My stories will come alive when I’m gone.
I finished my cycle 4, day 1 of chemo today. So far throughout the cycles I have had no nausea or vomiting, still have my hair, and have tolerated it well overall. I did get mild neuropathies mostly in my hands and fingers, and little in my feet. This usually only lasts a few hours following the chemo. Cold sensitivity is a weird but expected side effect. This time around, just taking a bagel from the fridge and touching it with one finger caused numbness in my hands – it will pass in an hour or so and there will be no issues after 1-3 days. But here’s another lesson, partially carried over from my previous blog. My insurance company wasn’t fooled by an $18,000 + bill for three days of chemo. They paid $10,000 less – here’s the breakdown. Imagine an unsuspecting patient with poor or no health insurance having to sell everything they own to get chemo – we have a problem in this country! And one more lesson; I started my chemo on Thursday this week instead of the usual Tues – Thursday. When checking out (no, not for good), I learned it would be a problem for the insurance company if I moved back to a Tuesday start date because they won’t want to pay for two days earlier. I told the clerk that I will not have the insurance company dictating my care, and that I have a LIFE and have scheduled lectures, travel, and family time around this. True enough, you do need to be careful about normalized blood cell counts if moving backwards, but 1-2 days shouldn’t matter for my particular chemo regimen. Presumably problem is solved and Dr. Onc will gladly obtain a prior authorization. But seriously!?! Everyone needs a patient advocate for even the smallest things.
So what did we learn this week? Although terminal disease is a death sentence nobody knows when their time will come even in the best of health, terminal disease should not define life, especially when you are a husband, father, papa, friend, mentor, and still breathing air with those that love you as much as you love them. Sure it’s hard. It’s great watching all the cousins play, laughing at the amusement park, jump in ocean waves, biking with your daughter, taking pics of four Fudin generations, etc. It’s not so easy to observe all the activities and commotion surrounding you in fleeing moments with intruding thoughts of all their life milestones and achievements you will miss (concerts, sports, graduations, weddings, great grandchildren- I have a lucky Dad in that regard, as he will soon have eight of them) or that they will miss having your proud face doting over them and/or participating – that’s the hardest of all.
Thank God for my wife Robin. She is a heaven on earth taking care of me each day – she has just the right mix of compassion and tough love. And a special call out to Becky and Barry who have been here for us every day, and to their sons Zach and Shane who flew in from southern CA and Reno NV. Other honorable mentions go to nephew David and niece Genna who flew in from CA and Danny who flew in from Austin TX. It’s the good thing it was a beautiful day outside and everyone was vaccinated, although we did have a no hug policy.
HOW DO YOU DO IT?
This is a question I am asked daily. Here’s the thing – after reading this post, it should be obvious that each new memory and moment are clear in my mind. The silver lining in this cloud is that memories I eventually bring with me will be close to my heart, and recent rather than 20 years old or more and faded. Being with family and friends, watching my sweet grandchildren, my own children, and eventually departing here with these fresh memories is a good thing. Yes, I’d like to be here into my 90’s and to see them grow, but instead I’m going to embrace their innocence and love here and now. One thing I’ve learned throughout this ordeal is that you should not go through life without stopping to enjoy it with those that are most dear to you.
I’ll plan to keep balancing those lemons on my head and making sweet lemonade, which by the way goes nicely with tequila. Hats off to betting on life!
As always, comments are welcome!