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!