Great news – the lymph nodes are confirmed as clear as of 2018-09-11. Hallelujah! Thanks to each of you for the expressions of caring in varied ways, especially the strength and support you shared with those thoughts and prayers!
For those who were receiving Herbie updates, it seemed worth letting you know about a recent melanoma diagnosis. Those details, should you be interested, are HERE: http://www.stevelong.longmemories.info/herbie-medical-updates/
Today was hopefully my last day at Anderson Mercy Hospital as a patient for a long, long time. We were skillfully registered by Jillian; ushered to and cared for in “my SSU room” by Glenda and Angie; wheeled up to the CT Scan by Ronda and Ashley (without hitting the walls or other obstacles!); CT Scanned by Tracey and then cared for well over an hour in the Radiology/x-ray room by Ronda, Ashley and Dr. Charles Young (with guest appearance by Erin.)
I mention the names above to provide you a glimpse of the number of folks involved with my care each week. I’ve written about Mercy Anderson as a precious gem in the Anderson Township jewelry box and it’s the people more than the building structure that I reference. These people have made the hospital experience wonderful in spite of the medical nuisances. Please do me a favor and hug someone you know in the medical profession the next time you think of it. Should they ask, tell them “it’s for all the Steves they deal with so effectively and lovingly.”
On to the Herbie news. The third sclerose agent, betadine, seems to have successfully finished the task of deflating Herbie to a fraction of his original size. Most of my last several days have involved no drainage which was a priority before completing treatment. So, today we performed one last betadine sclerose and took Herbie’s tailpipe out. That little 12 inch piece of pipe/hose is a welcome removal. We now count on Herbie to stay entombed with no further awakening. Herbie RIP!!!
How can we fully thank you for your part in making this journey so successful? We can’t. What we can do is share our thanks in these words plus hugs, words, smiles and other future expressions of appreciation. Here’s a video expressing a little of my thanks for your love, support, thoughts, prayers, notes, cards… https://youtu.be/hVPCZe_k4Ec
Many thanks for all you’ve done to lift me up as though on eagles’ wings. While doing some reading this morning, this Krista Tippett quote resonated with me:
“The intention to walk through the world practicing love across relationships and encounters feels like a great frontier.”
Thanks for navigating this great frontier with me, practicing love on me. I’ve felt it “big time!!!!!” I love you!!!!
Well, Herbie was not one to be capped. Within 24 hours we were seeing evidence that capping was not a solution so last Friday afternoon we went back to the ‘ol tube & bulb to release that pressure.
This morning we went in for a treatment with the third and final sclerosing agent (we kept the agent in for an hour so Herbie got a full dose.) On 4/12 we will be doing a CT Scan to see if we’ve reached as much “Herbie hardening” as we might ever expect. If so, that will be the day we pull out the drain and then will play the “wait and see” game – will Herbie become a mostly-hardened cyst that never causes another symptom or is likely surgery on the horizon…
Kim has been a great source of support on this journey and that continues to this day. We’ll continue to be inquiring, prayerful and persistent. We are both EXTREMELY thankful for all the blessings you all have showered down upon us in so many forms: prayers, cards, calls, other acts of kindness and much, much more. Many thanks, one and all.
With love, prayers and thanksgiving,
While trying to balance my mindset in association with all that’s going on with Herbie and his side-effects, this quote really caught my attention:
“The soul is not simply within the body, hidden somewhere within its recesses. The truth is rather the converse. Your body is in the soul. And the soul suffuses you completely.” ~ John O’Donohue (1956-2008), Irish poet and priest in Anam Cara: A Book of Celtic Wisdom, 48-49.
[Should you have interest in reading some other favorite spiritual/religious quotes, amassed over a lifetime, they’re HERE]
As anticipated, this morning showed no improvement. Our radiologists decided after trying two sclerosing agents it’s time to see if we’ve hardened Herbie up enough that he won’t cause any more trouble. The tailpipe (drain) is now capped.**
- We hold our breath and hope that Herbie doesn’t try to re-inflate. At 28 cc, he’s less than 10% of his original capacity and shows no inclination to get smaller. We’ll hope he doesn’t try to enlarge now that fluid has nowhere to go.
- CT scan on April 12th to see if Herbie stays small or if he expands once capped. If there’s no expansion, we’ll take out the tailpipe and hope that he never causes problems (possibly even dissipating into my body over time?)
This decision is welcome in multiple ways:
- For the first time in over two months there is no extension tube and bulb, making clothes more comfortable and simplifying several daily activities
- There’s some hope that we’ve collapsed Herbie enough that he’ll give up
- Though we appreciate their smiling faces and personalities, it’ll be nice to skip a week of visiting our acquaintances at Anderson Mercy Hospital
We won’t get our hopes up TOO much, but it’s nice to assess and then proceed as warranted.
Many thanks for the continuing thoughts and prayers. We hope and pray for a joyous Easter time for you and those you love!
** the drain is staying in since Herbie is deep in the body and of smaller size now, making connecting another tailpipe more difficult (and likely painful?)
High hopes, we have, high hopes … and then nuthin’, for this week.
Looks like Herbie has had enough of the fizzy drink – no progress (same size opening as a week ago.) We’re giving ‘ol fizzy one more try just in case, but we’re figuring that next Thursday we’ll move to the final type of sclerosing agent***. With that day being Opening Day for the Reds, maybe it can be closing time for Herbie (with the allowable few days to clear out his things?) We’ll keep those high hopes for sclerosing to complete the task!
Thanks for the continuing kind thoughts and prayers for me, Kim, our family and the medical staff** working with us. Enjoy the day, with a smile on your face [and with knowledge that I’m smiling at the blessings of this day, and every day!]
** This week’s staff member focus is on Dr. Charles (Charlie) Young. Dr. Young is a kind soul – gentle eyes, friendly manner, confident approach, similar hairstyle to mine…and a burly beard! 🙂 He reminds Kim and me of our good friend and former MWPC church member, Brian Hill (for those who don’t know Brian, he is a kind, bright, gentle, passionate soul.) Dr. Young remains confident that Herbie can be hardened and left to disintegrate in me rather than requiring surgery. May it be so…
*** our understanding is that this sclerosing agent will be “introduced” twice daily by us using the drainage tube. Maybe my next career will involve going back to school for nurse’s training? NAH!
The first line of this song likely gives the update away … Simon & Garfunkle remind us that slowing down isn’t always so bad. Wish Herbie didn’t heed them so well (another drop of 10-20% from the previous week’s size, so slow and steady continues.)
Despite that slowness, I’m “feeling groovy” (at least 99% of the time!) Next treatment is on 3/22 and one week after that I intend to be watching the Reds play some opening day baseball!
Have a great week ahead and thanks again for all the kind thoughts and prayers – they’re assisting me in keeping the “groovular feeling!” 🙂
Herbie is at about 10% less capacity than a week ago. Progress is slow, a little like this humorous sloth clip from Zootopia. We’ll just enjoy the scenery along the way, including my first 2018 trip outside the tri-state (headed north to see our parents!) Next procedure is on 3/16. In honor of March Madness maybe we’ll shoot for a double-digit decline in cc’s of Herbie capacity for that procedure?
Person of the week is Ali. She greets us at the registration desk just inside the front door on most mornings when we arrive for the Herbie-cide** procedure. On some days she already has my paperwork printed and my “bracelet” ready to put on my wrist so we can almost do a walk-by on our way to the SSU (same-day surgical unit.) While we don’t get a lot of time to talk, Ali has a smile and willingness to help. What a blessing as the “first face” – or nearly first face – for many folks registering at Anderson Mercy Hospital!
** thanks to brother Andy, for the pesty-cide naming!
Just like in that fable, I’m feeling the urge to race forward to the finish line. Sclerosing is not a speedy process though. Our medical team says that slow and steady can win the race and that’s our objective.
The good news? Herbie is down 10-20% versus last week’s size and we’ve*** re-positioned the drainage bandaging with an apparent side-benefit (based on a couple hours experience) of more comfort!
The bad news? No driving to warm weather climes this year for extended time to see family and enjoy baseball spring training games. Home base (pun intended) allows too many of my necessities right now, including proximity for my weekly radiologist procedures. We’ll miss the family time, for sure!
Next sclerose procedure is 3/6 at 8 AM. We’ll hope the fizzy drink continues its shrinking ways on the back of a slightly faster tortoise?
Continuing thanks for all the thoughts and prayers, especially those focused on patience. This hare feels the support of those “big time!”
Sending love your way along with a link to a really good “Love Train” video HERE if you have a few minutes to hear good music and see some beautiful images of love…
*** Nurse Ronda in radiology has been a constant virtually from the start of the QR&D process. She is friendly and collaborative. Today we changed Herbie’s tailpipe placement for better drainage. She and the team help make my 20 minute rotation “twirling” go quickly with conversation on any number of topics: Valentine’s Day philosophies, Olympics, families… What a blessing to have compassionate professionals working with us!
We had a very uplifting, productive session today. The usual friendliness of the staff certainly helped, coupled with Angie** batting 1.000 on IV sticks (she’s 4 for 4!)
The good news continued during the x-ray and injection process – – Herbie has decreased substantially (probably 25-30%!) We installed a new tailpipe and while Herbie ordered alcohol “neat” (given his previous love of that,) we chose the fizzy drink again instead. Next treatment is Tuesday at 8 AM with hopes for continued shrinkage and minimal drainage.
Many thanks for the thoughts and prayers – please keep ’em coming. My energy levels are increasing and this past week I’ve been able to resume lots of activities including singing at the hospice in-patient unit and re-connecting with my wonderful friends and colleagues there. Such efforts re-charge me all the more!
Have a great week ahead and we’ll hopefully be sharing positive news again this upcoming Tuesday….
** Angie is an upbeat presence in the SSU – – she’s nicknamed me “clammy hands Steve.” In addition to being a great “contact hitter” on the IV front, she is a wife, mom and is nearly ready to graduate with her next degree (she just completed an ethics paper and scored 95 out of 100 on it and is now readying for a 30 minute presentation.)