As we round the corner to winter, I sit in my usual chemo lounge chair typing as I enter cycle-12 of chemotherapy. This fall has been amazing with adventures, the colorful leaves, and visits with lots of friends and family. Commensurate with the fall, I have successfully harvested a tree full of lemons and embraced the harvest moon which aptly has been symbolic of a new beginning. For me, that beginning comes in may ways. I continue to feel well, my cell counts and blood chemistries are all within normal limits, no disease progression or visible tumors as outlined in the last blog, I was able to easily do all the fall leaf and other outdoor winter prep, and overall, LIFE IS GOOD.
These last couple of weeks seemed pretty normal, almost like there’s no cancer. Robin and I spent several days in New York City helping out with our grandchildren while their Daddy was out of town on business. We enjoyed time with Anna (aka Silbie) and Emily (aka Boom-bah) and did tons of walking and taking in the holiday sites, including the legendary Times Square Christmas tree. Last week, I was “back in the game”, doing some consultant work for a pharmaceutical company in Chicago – seems like normal, right? Shhhhh, let’s just go with normalcy for now and be thankful!
Topics today include:
- Elephant in the room
- Commercial Breaks and Cancer Screening
- Update on self-care for port flushes, concern for aseptic technique of nursing staff, self-administered IV port flushes
- Reader feedback please!
For our visit to NYC, we did have a moment where the proverbial elephant crawled into the room for a short dance. I learned that many weeks ago I was spotted on the floor with baby Boom-bah. I was not aware until almost three months later that unbeknownst to me, I was observed having both joy and sadness in my eyes that day on the floor. I guess you can’t hide certain things from your kids. It’s true. I cherish every second with my grandchildren, but deep inside, the emotional pain of not being around to watch them grow up is greater than any physical pain cancer might bring. Don’t misunderstand – I remain thankful for everyday I’m alive and grateful for every moment I’ve spent with my wife, my children, their spouses, but especially the grandchildren. I also feel blessed that I will likely be alive and healthy enough to meet two more grandchildren in February and spend quality time with them for several months (hopefully years). But yeah, I’ll be over the moon in joy when they arrive while holding back tears of sadness inside knowing I won’t likely be around to watch these cousins play, dance, sing, and grow into young adults. That just eats me up inside more than any cancer. Thankfully most people don’t need to deal with this, but I pray that my experience will help others to realize how important every moment is, even if you’re just watching your family enjoy life from a sofa, across a field, on the playground, at a concert or a wedding, or whatever. The alternative of course is watching from a very far place, and if there’s a way to be there, I will. But there is that shining glimmer of hope cultivated by the harvest moon that maybe I can beat this disease.
As our children became young adults, something special happened. All their professional careers somehow intersected with mine in some small way or in some cases, larger ways. Some decisions along their life paths were discussed with both Robin and me. In some cases, they’d maybe lean towards one or the other looking for an answer they favored, but they are smart enough to scrutinize both opinions. I want to watch this unfold between my children and their children – what a thrill that will be. Here’s to hoping I’m around for this little delight.
Commercial Breaks and Cancer Screening
And now for a commercial break…
If I see one more Cologuard commercial, I think I’ll throw a brick at the TV, or at the very least I’ll imagine cutting that sucker up with box cutters for the recycle bin. Please pay close attention to that commercial. It touts a 92% effectiveness in testing for colon cancer such that 8% are false negatives. That means that if 100 of you readers do this instead of a colonoscopy, 8 of you might end of with undetected cancer that will be less treatable. Extrapolating, that means 80 persons for each 1000 readers or 800 for each 10,000 readers. IT’S NOT WORTH IT! A colonoscopy is close to 100% in detecting early cancer.
This leads to my next commercial break. I owe a thank you to all the readers here for sharing the lemonade blog post links. Readership from my original professional posts (which will resume soon) have gone from about 6000 thousand per month to 15.4 thousand readers per month. WOW – let’s extrapolate that. If all 15.4 thousand readers here were to opt for Cologuard, 1232 of you may go undetected, progress to end stage colon cancer, and may not survive beyond two years. Think about that and encourage your loved ones to have a colonoscopy and go for age-appropriate / risk-appropriate colonoscopies. And, let’s not forget about other screenings such as mammographies.
Update on self-care for port flushes
For those of you that have been following my posts regularly, you know by now that we don’t have a perfect healthcare system, especially for those with catastrophic illnesses such as cancer. A compelling calamity in this country is multifactorial and instigated by a profit-driven system that overwhelms clinicians thereby reducing safety, perhaps reducing efficacy (do to mandates from insurers), high copays, and more. Many of these issues are covered in my last post, DOCing at the Port versus Strong Waves of Resistance in a Sea of Lemonade.
Update on concern for aseptic technique of nursing staff
Let’s start with the positive. I made it crystal clear to more than one administrator at the oncology clinic that I was concerned over the “sloppy” aseptic technique among about 50% of the nurses when accessing my central IV line, manipulating various of my IV medications in the clinic, and/or disconnecting me and flushing the line on day three when I am disconnected from the ambulatory lemon infuser. This complaint seemed to be taken very seriously at the time. I’m happy to report that my two visits since that complaint were vastly improved. My last disconnect seemed flawless in terms of sterile technique and today, it seems we are in line (pun intended) for a safe and sterile visit. I’m guessing there was some serious inservice education and warning to staff between my complaint and today’s visit. GOOD for the patients, and kudos to the oncology practice.
Update on Self-administered IV port flushes
Not so much kudos here. If you recall from the last blog post, there was some hope that I’d be allowed to disconnect my lemon infuser at home on day-3, flush my own central IV line, pull out the needle, and cover the port area with an adhesive dressing. My discussion with the administration and my doctor was positive (at that time). Recall that the first homecare company would not take my case because it wasn’t profitable for them. [Side note: You could be sure that if I was in the UK, it would be both allowed and encouraged because it’s less expensive to “the system” and best for the patient.] I’m guessing the administration anticipated a rejection from the homecare company and was therefore willing to throw me a bone. What they didn’t expect is that I wouldn’t drop it and that I would seek out a compassionate agency that would help. Well, guess what – I did just that. A local homecare agency affiliated with a major hospital system agreed to do two visits, to document my competency, and share that documentation with the oncology practice to protect their sacred “concern” of culpability. My oncologist graciously agreed to submit the second consult.
The very next day I received a call from another administrator with the oncology group. The rules now shifted. I was told this time that if the oncology group starts my disposable lemon infusion pump, they need to disconnect it, otherwise they will not allow this unless the homecare agency is willing to give the chemo. I’m like, seriously?!?!? What’s the logic in that? I know darn well that insurance won’t approve home chemo because I’m not homebound – the onc group knows that too, that’s why they offered this. There actually is no realistic clinical or legal logic except the money paid for disconnection at the clinic. They’re claiming it’s a legal risk. I told them I spend most of my days doing legal work as an expert clinician and now that my concerns have been documented about their staff, if my port did get infected, they can claim it was me instead of them, which diminishes their culpability instead of increasing it. And really, who cares? It’s a risk just like surgery and there’s probably limited culpability anyway. I requested to speak with the medical director, but so far that has fallen on deaf ears. My oncologist is willing to change my 5-FU to oral capecitabine, but why would I want to do that when I’m responding well without side effects. And although capecitabine has similar efficacy, it has a higher incidence of GI symptoms and hand/foot syndrome.
An interesting fact is that I was originally told they would not allow a self-disconnect because there was no internal policy. Yet, they seem to be making policies as they go – like “we don’t allow it” and “if you are connected here, you have to be disconnected here”. Well then, is there a policy, is there not a policy, are you being dishonest, are you being stubborn, are you really concerned about my safety, is it about profit, do you not treat patients as individuals which is clearly outlined in your policy, …?
Reader feedback please!
I would love feedback on this! Please select one of the choices here or make your own and respond on this site as to how, in your opinion, I should proceed.
- Suck it up and drop the option for self-disconnect. You should be happy you’re doing so well irrespective of losing four days a month and being forced to stay in town rather that working, vacationing, or spending it with family.
- Keep the discussion going at the oncology group and ramp up the pressure to allow self-disconnect.
- Change to oral capecitabine and take the risk of side effects. Maybe you won’t have any additional side effects.
- Other, please explain.
Until next time, stay healthy and enjoy the holiday season. I’ll be back just before the New Year, or soon after. You know what they say, It’s not the destination, it’s the journey! (Ralph Waldo Emerson) The lemon harvest is tucked away for lemonade over the coming year, and the journey continues irrespective of the final destiny.
Comments are enthusiastically welcomed. I love receiving comments of various social media sites (Facebook, Linkedin, Twitter), but please also paste those comments on here if you have time! Many thanks for being one of the 15.4K readers here!
18 thoughts on “Harvest of Lemons, Moon, and the Journey”
1-Suck it up and drop the option for self-disconnect. You should be happy you’re doing so well irrespective of losing four days a month and being forced to stay in town rather that working, vacationing, or spending it with family.
2-Keep the discussion going at the oncology group and ramp up the pressure to allow self-disconnect.
3-Change to oral capecitabine and take the risk of side effects. Maybe you won’t have any additional side effects.
4-Other, please explain…..
We’ll seek out others to see if self
Connect is doable… if it’s not to stressful seek other angles in proceeding… is there any possibility of doing the disconnect at another facility? Kind of like a person on dialysis migh do if on vacation- ie dialysis in the vacation location? Perhaps this could be a “thing” in the future?♀️
2- if it doesn’t wear you out or stress you out keep up the pressure… maybe seek an attorney’s advice on this becoming a reality?( legally)
3- what’s the study info say of both means of taking capacitebine? How quickly could you switch back to the original method, and maybe you could try a switch when distracted by something fun?♀️ It sounds scary to try the oral method and maybe the original way of taking it bypasses your stomach hence no nausea?♀️
4- breathe… get a magic 8 ball , lol jk… but trust your gut and keep positive… as you are an amazing, inspirational and awesome guy dealing the shitty hand you’ve been dealt with grace and humility and honesty ( don’t judge the run ons etc ) long story short as doctor Ruth would say” if it feels good, do it!”❤️
Happy, healthy new year!!!! ✌❤️
Hi! I vote for option #4. Find a different oncology practitioner or small group. I would hope that there are other local experts who would value your expertise, opinions and wishes, and be able to coordinate care while treating you as a valuable asset in your care and not someone to resist. I have said to you that the energy you are spending on this battle could be directed in a more productive, health-promoting manner.
I wouldn’t advocate for changing meds that are tolerable and working.
Keep doing all the things you love, keep laughing, and keep making plans.
Of course, I will support whatever you choose!
I remember a time that the fight was the only choice. Battle makes us weary and the energy you spend fighting will be subtracted from all the moments you have left. Choose wisely my friend. With much love and respect Cathy
I continue to be inspired by your writings and courage. I have a Cologuard story for you. Had my first colonoscopy at 50, exactly 1 week after my mother had her first at age 75. She had colon cancer, had an ileostomy and passed about 6 yrs later. I had two small non-adematous polyps removed. Colonoscopies at age 55 and 60 were negative and due to Covid and moving to Florida I am about a year overdue. At my Medicare Wellness visit last week, I asked the new PCP for a gastroenterologist or colon-rectal recommendation for a colonoscopy. I explained my history as above and he suggested Cologuard now instead and do the colonoscopy at age 70. It sounded OK so he ordered it. I have 2 retired docs in my new neighborhood, one a GI guy and the other an internist. They both said to forget the Cologuard and do the colonoscopy. The GI guy was adamant! I received the Cologuard via UPS about 30 minutes ago. I called them up and expressed my hesitation and they were as nice as could be and told me to dispose of it and not to worry. No pushback whatsoever.
Many years ago, after helping our parents and a couple neighbors navigate the healthcare system I came to the conclusion (and now totally reinforced to the moon because of your experiences) that if one is not knowledgeable or have someone advocate on your behalf, God only knows what will happen.
You are helping many people with your blogs. Keep up the good work. I will continue to pray for you and your family and keep you in my thoughts.
Definitely option 2!!! We encourage families to disconnect home hydration/continuous medications at home as long as the family is taught how in clinic and competent to do so. We send scripts for flushes, sterile gloves etc to the home care companies and call it a day! As someone who hopes to work up here in the next few years it’s sad to see how many steps backwards the hospital system is from where it could be. I’m happy to see if we have any written policies on flushing the mediport at home that could help your team create an internal one.
Thanks Leslie. If you could share those policies, it would be awesome. Please send to firstname.lastname@example.org.
Jeff… You touch me again with your perspective…. Somehow my eyes leak sometimes when I read your posts…. I opt for #2 because in all the years I Have known you, you have never backed down from a good fight when you are in the right…. Continue on soldier (and I give you that distinction for the battle you currently fight and all the years you supported us Veterans)!
The concept of proper healthcare should have the highest and best focus on the patient. It must recognize that each patient’s needs, skills and outcomes will vary by circumstance. No physician (nor any other entity) can “save” us from death — only do their utmost to provide each individual with the highest quality of life for the longest amount time possible.
Continue to fight for the recognition that your needs as the patient supersede “their” needs to follow a process. Ultimately, it is the patient that must live with the results of all actions for their care — if, for you, the rewards of removing your port outweigh the risks (certainly an informed position in this instance), then the healthcare providers should support your decision.
It is not the years you live that are as important as the life that is lived in your years.
keep going Jeff! Hoping you’ll win very soon! Health care policies can be so contradicting to what they say their mission is
I enjoy your posts. Thank heavens you can advocate for yourself. Many are not so fortunate.
Thanks for sharing your experiences, Jeff. I have an opinion, but I think your perspective is the one that counts. It strikes me as the height of irony that you’re having to run the gauntlet with docs, administrators, nurses – the system is designed to benefit the system – when the goal of cancer care and even the clinic policy is to be patient-centered. I wonder what patient-centered means to them?
Why not try the Xeloda for a cycle or two and if the side effects are troubling go back to the 5-FU and push harder on getting approval to self disconnect.
Most of my xeloda patients successfully prevent hand foot syndrome with some urea based moisturizer BID and those with diarrhea respond well to immodium. Seems like there isn’t much to lose by giving it a shot!
Keep fighting, Jeff! If this is your wish, it should be honored…we are both aware (as is Robin), that agencies say that they want the care to be”patient driven”, but patients are told that if the professionals disagree with them, it is mostly for litigious reasons….so how is it patient driven? It’s legally driven!
Good luck and I hope you all have a wonderful holiday together! Love and friendship to you and Robin!❤️
jeff…thinking back to our college days…I remember you being a friendly guy with an easy smile…your selflessness though was lost on me then…it is glowing now…thank you for sharing your journey…I love the threads of gold contained in your narrative…and the really good positive thoughts…you are respected and loved my friend…prayers for all good things for you and yours…God Bless you…xo
This post in particular was wonderful and heart wrenching to read. I’m so glad you’re doing well, but saddened at your worry about being here to see your grand babies grow. It just breaks my heart. I’m frustrated for you that you aren’t being allowed to disconnect and flush your port yourself. You are clearly more than capable and qualified. I have to agree that it appears to be about the money… which is sad and disgraceful. Continued prayers for you, Robin and your whole family. You really are so inspirational. Lots of love to everyone❤️
My advice would be to drop the option for self-disconnect. I’m more than that happy you’re doing so well irrespective of losing two days a month and being forced to stay in town rather that working, vacationing, or spending it with family. Additionally, sometimes eyes-on is a good thing.
As always, what a human post! Stay Fudin!
Okay, Bro-Bro – This is your dear friend and Medical Ethics Professor opining on the onc group’s behavior. Clearly unethical, not illegal….so they’ll keep doing it as long as they can. I’m guessing that you’ve reached your out-of-pocket maximum for the year (and will likely do so next year, as well. Assuming I am correct, don’t piss off the onc group that is instrumental in helping you into your amazing recovery. Let the insurance company fight with the onc group if they’d like. Don’t stress yourself about ethical issues at this point, as you don’t need the tsuris.
Miss you and love you!
Thank you Michael. It’s not about insurance covering. I passed that hurdle and would pay out of pocket if necessary. It’s the fact that the oncology group won’t allow it because, either they are being shortsighted or because they will
lose a visit, or both.