Hello lemonade followers. This week I’m rounding cycle 9 of chemo and thus far tolerating it quite well. As I reflect back on cycle 1, and the various bumps in the road that necessitated my personal / professional interventions, I feel like it’s more accurate to say that the chemo (and my providers) have tolerated me.
Each two weeks at about day 10 after beginning chemo, I think, hmmm, there’s not too much material to write about this time. But it seems that just before the next chemo cycle, something happens. Last post was a perfect example, when “Dee” took one for the team and flew herself down a staircase, so I’d have something to write about. Thank you, Dee! But seriously, she is back in Florida with my Dad, and they are both doing fine.
This post will be unusual. There have been no medical or medication mishaps and I’m feeling great. So, I decided to let you all know what’s been going on peripherally (no pharmacy nerds, not a peripheral vein versus central IV access) so that those battling their own chronic illness understand why I’m really still here and why they should embrace their own peripheral “teammates”.
Let’s start in reverse chronological order. This past weekend was an amazing wedding between two lovely “family” members, Melissa and Adam. This wedding has been postponed 2-years due to the pandemic and the day finally arrived. I might add that all attendees were required to have been vaccinated. For you antivaxxers, this would otherwise have been a lifetime event this guy would’ve missed. Think about others before yourself!
My wife Robin grew up as a child with Melissa’s parents Bobby and Jill. The three of them are like siblings. Our families have known each other for all the years leading up to our marriage and beyond.
At this wedding, as I do at every major family celebration, I had an opportunity to once again be the SAXiest man at the party. This of course is consistent with the title that includes “fortitude, flamboyance”. Thank you to the band members who I hadn’t met previously that trusted me to just jump in. This post will not be about me, but I am going to share this VIDEO CLIP of me improvising (stay “tuned” on that) so that you understand the importance of those around you.
One thing I must mention about the wedding is that I’ve never seen so many forks coming and going for a meal. This reminded me of all the forks in one’s road during life and the decisions we make along the way. Bobby came up to me to thank me after I played and he told me that people were so enamored by the performance that many cried. He doesn’t know this, but I had to leave the room for a bit because I had to cry tears of sadness that this could be my last opportunity to play with a band, but also far more tears of joy to know I could actually pull it off, since I could barely walk a block 8 weeks earlier. Remember, cherish the moments you do have because everybody is terminal from the time of birth!
Now that you’ve seen this clip, as I used to do with my own band members, I’m going to introduce you to the band members that have worked in harmony to keep me alive and functional, often improvising in tune and in sync as my personal song changed from beautiful harmony to dissonant chords, key signature changes, to a CODA where I am now. Why a CODA, well because I get to repeat good moments over and over with some new improvs along the way – how fun! While the CODA most often comes at the end of a song, it gives various opportunities for going back in the music score and living life. It may conclude a song or it can be used as an entire new section of improvs and living in the moment. In a way, I am “in the zone” of an infinite CODA for now.
Introducing the band (family)
As with the chronological scale, I’m going to do this in birth order, and I’ll save my wife Robin for last – let’s call her the “second ending”, even though she came first. Music is funny like that because depending on how it’s written, the first part can come later. The band members will be my kids, although I do have something special planned for their spouses in an upcoming blog post. Kids, if I get any of this wrong, please comment here and correct me.
On saxophone, doubling on clarinet, we have Jason. Since the beginning of my ordeal last May, he has been a rock (band), leading the ensemble with stoic and unwavering command of the music score. Although running his business, see Whyhotel (and family) keep him extremely busy, he dropped his entire world last May to conduct an orchestra of siblings. Jason is not a medical person, but he’s a sponge when it comes to learning. Between reading, questioning me, and presenting challenging and relevant questions to my doctors, and regularly updating his siblings, he has been more of a conductor. Thank you Jason for carrying the baton and never showing fear – I know, like me, those stoic moments of fighting back tears and panic were equally matched privately with real tears and panic.
On flute we have Sarah. As Sarah was growing up, she always thought she’d own first chair (aka favorite daughter) in the Fudin ensemble. That was true for her first 11 months of life, maybe even 12 or 13, as Robin and I navigated caring for our third band member born with a 3-week birthday overlap to Sarah (no again pharmacy nerds; I did not miss the birth control lectures in college). I believe that since my diagnosis, I am on her mind constantly, maybe because I’m her “favorite father”. She is the type of person that wears her heart on her sleeve privately but leaves everything on the field with an unflappable face when anticipating a win regardless of the odds. Sarah is busy with her family, her work, and hobby Shore Dye, but knows how to help me win this battle. A fierce lacrosse defender in college, she knows my odds and knows how to rally the team for a win. Just check out her personal Instagram posts on Shore Dye (labeled Dad) that are dedicated to these lemonade posts, where she literally continues to rally a team of inspirers for me. She rarely read my blogs previously (mostly medical), and if she did, understandably had little reason to share them on social media. But alas, Sarah has a very important role here in strategizing so that my music goes on for a very long time.
Let’s hear it for Hannah on clarinet, doubling cautiously on alto sax. For most of her life, Hannah has marched to the beat of another drummer, but somehow still plays well with the ensemble. She is probably the most compassionate person I know as witnessed by her many international and domestic travels to help poor communities or those facing travesty (think Biloxi after hurricane Katrina). She hiked all 46 Adirondack peaks in one summer while dealing with brutal body wide mosquito bites and asthma! Hannah is my only child that pursued a career in the medical field with a PharmD and back-to-back residencies. Sarah (above) feels that first chair started to slip away with Hannah going to pharmacy school, and then her youngest sister, who is the only one living locally, married a PharmD. Sarah – it doesn’t work like that and since you now have two children, you’ll learn this lesson quickly. Hannah’s role in my rollercoaster journey has been with the other drummer. She knows the odds better than anyone and she has treated patients with terminal illness. Notwithstanding, Hannah just matter of fact(ly) knows it’s a win for me and that cancer can’t possibly rule my life now or long-term life expectancy. She just knows it! For that, I am happy she hears that beat from another drummer, marches out of step, and refused to march with the band of assemblyline medicine which ignores patient individuality. She is with us on the east coast for a month, and for that we are grateful and inspired.
And last but not least, is Shirah on vocals! Shirah refused to “waste time” learning a musical instrument as a child. But make no mistake, she has perfect pitch and can sing like a bird, although you’d never know it unless you catch her off guard. And as life would have it, “Shirah” is Hebrew for “song” or “sing”. Shirah’s role in all this is bolstered by the fact that she lives just 20-minutes away. She just smirks at the cancer and although deep down she harnesses sadness and fear, she is somehow able to compartmentalize that and go on with life as though nothing is wrong. I will say this – she visited me every day in the hospital and although she isn’t generally one to do that (she hates hospitals and germs), she was there, which really gives me comfort for the future if things go south. Shirah generally is not one to volunteer with various tasks, but she certainly has risen to the occasion. If I ask her to do something or she knows I need help these days, she is all over it (or she sends her husband). Being so close to her husband and daughter has really been a Godsend. I really enjoy the way she goes on with life, business as usual, irrespective of the hidden thoughts beneath her hard exterior shell. She is an absolute delight to have around.
Then there’s Robin. We usually don’t announce the “manager” or “roadie”. Robin would be the person coordinating set-up, making sure all the wires are taped down and each person has a microphone, that things happen on time, and that everything is organized so that when the band members arrive, everyone is good to go! Robin has been a rock through all this. From my end, she’d make sure I have all the instruments I need for the gig (various horns, all polished), clarinet, maybe flute, that the pads are all dry, and the reeds are in good shape and moist. Okay, no judgement here on checkups for my horns, moisture, or pads. I know that Robin has avoided processing the whole cancer ordeal in the moment, but we have worked together on various important preparatory activities (electronic bills both personal and business, secured everchanging password access to same, house repairs and use of certain tools, and upgrade from gasoline to battery powered garden tools). The truth is, Robin could easily hire out for these things, but we probably both agree that a slow transition and command of certain self-sufficient repairs and maintenance are “Robin-centric”. All aside, Robin has been an amazing host to all our visitors and is the person that has overseen the revolving door from week to week. We’ve actually started a new house policy – all are welcome, but if you sleep over, you are responsible for stripping the bed and remaking it with clean linens. That has worked out very well.
The title of this blog includes “forks”, and I mentioned the many forks at the wedding last weekend. We have come to many forks in the road since mid-May as my diagnosis was unravelling. I had many copilots to navigate variable forks in the roads from all those listed above and many of my professional peers, and friends. For that I am forever grateful!
What’s the overarching lesson in this blog post?
If you have a catastrophic illness, embrace your family, friends, and any support system available – it will help your health, your attitude, and zest for life!
Over the last several weeks, a number of cancer patients, or friends and family of cancer patients have reached out to me for guidance on palliative needs including medication adjustments/options, inspiration, and treatment / prevention of neuropathy. I am happy to provide medication advice with the caveat that all discussions are reviewed with the patient’s medical provider and/or pharmacist when applicable, both of whom have a clearer picture of their medical history.
To those of you that may have cancer and are following these lemonade posts, I can’t promise you’ll miraculously flip a switch and be able to hike, bike, or have a normal psych. But, I’m here to help you navigate your journey if you have questions. Perhaps a few medication or inspirational tweaks will help YOU embrace life and even extend it. Because I wish to spend some time to help others, and because I am feeling quite healthy, I may take a break from the lemonade blogs for a few weeks. However, I can’t predict the next road fork, so I may be back sooner, even if it’s to share other patient’s strategies on their personal journeys.
As always, comments are enthusiastically welcome, especially right here on this blog platform!