Kickin' Barrett's ***

We've lost count, but we think this is surgery #10 for the Hubs since he was diagnosed with "Barrett's Esophagus with High Dysplasia" a few years ago, coded as "carcinoma in situ". Fun times. Through all this though, we are thankful. Thankful the Barrett's was diagnosed vs. moving forward as a silent killer, thankful the leader in treating this was just up the road at VCU, and thankful that something is working.

We returned to VCU earlier than planned since the Hubs was having some flare ups/complications and his surgeon wanted to figure out what was going on. We arrived to our FAVORITE pre-op nurse, Emily, who makes the day brighter and much easier- she was excited to see us as well (and gave me a tip on 1/2 price Danskos :) It is definitely a comfort to know a friendly face.

The time in surgery was longer than expected, but went well. The Hubs was injected with dye that fluoresces and allows for micro-cell examination while M was under. He did not have RFA (Radio Frequency Ablation) today but rather multiple biopsies. Here is what we learned (beyond the fact that he's going to have neon urine for 24 hours):

M failed as a RFA (Radio Frequency Ablation) candidate because it did not eradicate the dysplastic cells, HOWEVER he was included in the clinical
trial for "cryo"- freezing the cells and that did seem to have had the intended effect over the last two visits. VCU is still one of the only centers in the nation to use cryo for Barrett's. While this was surprising news, it was good to know something appeared to be working.

What's next? This is the FIRST time we've left the hospital with papers that did NOT state "carcinoma in situ"! M's doc is cautiously optimistic. What we are hoping to hear is no dysplasia, no carcinoma. We know he still has Barrett's and that will require close monitoring and medication the rest of M's life. However, if it's come down from dysplasia, that is a big victory!

M's doc thinks the flare up and issues may just mean an adjustment in his proton pump inhibitor meds, which he adjusted today. IF clear pathology reports come back next week, M wins a whole year before he has to return! We're hoping and praying for clear reports next week.

We are so thankful for the support and care of our friends. Your calls, texts, and emails were greatly appreciated throughout the day, as were your prayers and positivity. We are blessed beyond measure, and a shout out to my parents for helping with Fudge and getting him to soccer.

M won't let me post a hospital pic of himself (wouldn't even let me push him in the wheelchair), so I've included a pic of his awesome surgeon, Dr. Z... who recently had a wing of the hospital named after him- love this guy and his bow ties. We're home, M is sleeping, I'm exhausted. Good night all!

Barrett's Esophagus- We Like GOOD News

The Hubs recently went in for Barrett's surgery #8...or is it #9? Really, we've both lost count. We actually had a really smooth day at the hospital- no waiting like usual and the nurse I think is fantastic was there watching out for us. Even traffic was good! It's like everything was smiling down us until the Hubs came out of surgery and we learned two unexpected growths were found and removed for pathology.

Well, the fantastic news came today- NED (no evidence of disease/cancer). That's always great news! We are so thankful. Additionally, the Hubs went from a diagnosis of high dysplasia down to no dysplasia (also a really good thing). The Barrett's is still present and there's still the diagnosis of carcinoma in situ, but this is some of the best Barrett's news we've heard to date. Thank you to all of you for your prayers and support.

The next step is the Hubs gets to let 5 whole months pass until his next surgery! That may not sound too exciting, but when you are on a 6-8 week rotation, 5 months is golden.

Post-Surgery Update on M

Surgery #7 is crossed off the list and MANY, MANY thanks go out to our awesome family and friends that have supported us with the blessing of prayer, kind words, and positive thoughts. We are humbled by having such a fantastic support network- thank you from the bottom of our hearts. The technical update is that M was in surgery a little over two hours yesterday. A long segment of Barrett's remains (not the news we really wanted) but it was a smooth enough of a segment that it could be treated with radio frequency ablation (RFA), versus cryo. In regular terms, they used a wand to zap off the bad cells, instead of freezing them off. M had two rounds of RFA during yesterday's surgery and he will need at least 1-2 more surgeries to continue to treat the high dysplastic (bad) cells, then another surgery to biopsy. Yes, we are on the frequent flyer plan at this hospital. After some time in the recovery room, a very groggy M was too tired and sore to eat dinner and he's up and around today, but still very sore. Despite requests to see M in his lovely and fashionable hospital gown (can't imagine why he refused those requests), I hope you got a chuckle out of the cartoon I found.

We did A LOT of waiting yesterday...but now instead of feeling like we are waiting with a bunch of strangers, we have folks coming by to say hello, check on us, ask if we brought pictures of "that cute little curly headed babe," and to ask how M has been faring. I like that it is the same support team and that they make you feel at home, in a place you probably don't want to consider anything like home. M and I both jest that we really should have platinum level frequent stay cards by now, and shouldn't there be some perks to go with that, beyond the free ginger ale and sneaking me back into pre-op and recovery?

The downside to tertiary care at a teaching hospital is that it can seem very disorganized and frightening at times. I will never forget M coming to after his first surgery last year, opening his eyes and asking me "WHAT DID YOU DO?" I turned around to see two armed guards in the recovery bay five feet across from us, with their prisoner. Nice. M, of course, thought I raised some kind of ruckus re: waiting and waiting and waiting some more and that security was called. We have to call REPEATEDLY to get appointments scheduled, typically with no callback, and it takes me emailing the surgeon directly (thank goodness for university email search) to ask what it takes to get a surgery scheduled that he mandated? I'm confident the admin team has my photo on a dart board somewhere- so be it. We've learned you have to be an advocate for the care you are prescribed; no one is going to do it for you. M's local GI specialist called the other day to tell me he still has no records, after 12 months of treatment with this hospital, so the poor GI intern got to take that down in his pre-op notes when I explained that I really didn't know what else we could do beyond the multiple requests and releases that have been provided. *sigh* At times, yes, managing a medical condition in this care space feels at minimum like a part-time job.

M and I had a "we are getting old" moment yesterday when the intern for anesthesiology came in. The attending we'd met a few minutes prior was what we expected, the intern, however, looked like he was about 14 years old. And 14 is being generous. Wow, did we feel O-L-D to cross that threshold into our caregivers are now younger than us. In Doogie Howser's defense, he did an excellent job answering my barrage of questions and even gave M a shot of lidocaine before inserting the IV. Where was he when I was being prepped for my c-section? Our next young one to arrive was the GI intern who would be performing the surgery, with the attending at his side. This one looked like he just gave up the tricycle for the two-wheeler, so it is a bit unnerving. All went well, and I am sure they are very talented young men, it just throws you for a loop to think, is this kid old enough to have a beer, let alone perform major surgery?

And just like the trusty specials menu at your favorite restaurant, we're thinking Mondays must be prison day at this hospital. We had the added bonus of two prisoners in our four person bay area, with three armed guards. Yes, prisoners need care too, but preach to me when the guy is five feet away from you and you wonder what he's doing time for. Makes you wonder when you are packing your hospital bag if you need to start adding "personal protection" to your list. Frightening.

In closing, I assume the admin team is tired of me calling for the following surgery the doctor always prescribes, so this time they pre-empted me and sent a note to recovery with M's next surgery appointment. Sweet- and really, about time. We'll be back in early December for surgery #8, and #9 will likely be in February 2011, be it for additional treatment or for biopsies. On a positive note, we are blessed that this condition was not quickly discovered in M. Had his Barrett's been diagnosed just 3-5 years ago, the treatment was radical (removal of esophagus). Despite all of the little annoyances, we are thankful to use new technology to treat this condition, in the hands of the world's best pioneers with it...we're just ready to get things "fixed" and get on with our next adventure. As always, thank you for your concern, care and support- it's priceless.

Lucky #7

Yep, that's right...we're hoping the 7th time is the charm! M has surgery #7 tomorrow, for treatment of his Barrett's with high dysplasia. Not much else to update at this point- it's been a busy couple of weeks and we know the routine when it comes to tomorrow...make the drive to the university hospital, get settled in, and wait...and wait...and wait some more. For our prayer warrior friends, please keep M and his physicians in your prayers. Our hope is this is one of the final surgical treatments he will need to undergo for Barrett's. We should know more after surgery tomorrow. Since the nursing staff is sweet enough to allow me back in pre-op, walking with M to the OR, then hanging out in recovery, I've had to swear holy not to turn on my cell phone. Assuming all goes as planned, I'll update here Monday night.

The fact that we are on #7 makes my head spin. For those wondering how we got to seven:

1. Emergency surgery/impaction/initial biopsies and diagnosis
2. Follow-up/additional biopsies- referred to tertiary care at research hospital
3. New hospital- additional biopsies for high dysplasia
4. Mapping for treatment
5. Failed session (reaction to anesthesia)
6. Cryosurgery
7. Radiofrequency Ablation or Cryosurgery (they make the decision once they see current state of the esophagus)

For those just catching up on all of this, some of the backstory is here. We are often asked, how did you guys even find out M has this condition? And really, the story is humorous to hear M tell it. The short answer is, "my mother-in-law tried to kill me at Sunday dinner." We were all eating pot roast and M started to choke, and choke, and choke. Of course, being stubborn and unable to speak, he's still trying to insist that he's not really choking, but maybe a piece of food went down wrong. My dad finally put his foot down and inisted M go with me to the local outpatient center, or we were calling 911 from the house. He got in the car, we arrived at the outpatient center, and they ended up calling 911 almost immediately. That won him a trip in the ambulance from the county's finest, to the ER, to the OR. When the surgeon went in to remove what he thought would be a food impaction, he quickly discovered the impaction was caused by a narrowing of the esophagus (stricture), which is caused by Barrett's, which is caused by severe and chronic acid reflux. So, there you go, my mom tried to choke him. ;)

Post-Surgery Update on Mark

First, thank you for all of your prayers, well wishes, and offers of help. We are blessed to have such a caring network of friends surrounding us. It's 4:30 Thursday afternoon and I sit here in the recovery area with Mark, listening to all of the monitors ping...ping...ping...

Today's surgery was considered a success; what an answered prayer that is on a long journey to date. They were unable to use the HALO method as planned (burning off the bad cells), as you need a relatively smooth area to apply to. In his case, and with the amount of damage in place, it made more sense to freeze off the cells (cryo). We knew from pre-op that they would not make a decision until they actually saw the current state of Mark's esophagus. The good news is that they believe they got the majority of the Barrett's column.

Right now, Mark is VERY groggy and sore as he recovers from the procedure and the anesthesia. Specifically, he has a very sore throat from the procedure. He's ready to go home and sleep this off. He's also looking forward to having some food since it's been almost 24 hours.

So, we should be discharged soon and should be on the road. Our big watch item right now is for chest pain and any signs of perforation. We get to repeat this process in about 2 months; thank you again for your thoughts and prayers.

Update on M

Update for family and friends; thanks for all of your thoughts and prayers.

If you are new to M's diagnosis, backstory is here. The quick summary is he was diagnosed with a pre-cancerous condition of the esophagus last March. One minute we were having Sunday dinner at my parents' house, and the next, we'd won a trip to the ER from our county's finest paramedics. After emergency surgery, we learned of M's diagnosis. We've not lost our sense of humor though; we all still joke that M's mother-in-law/my mom may have been trying to knock him off with the pot roast.

Today was surgery #4 and we're not much further ahead than when we started. #1 was the emergency last March, #2 was last October that confirmed high-dysplasia Barrett's, which won us a referral to a univerity medical center. Thankfully, one of the top docs for this condition is within a 1.5 hour drive, so we feel blessed we're not traveling beyond that. We met with this team in November and surgery #3 was in January. That surgery was supposed to be the first radiofrequency ablation of the dysplastic cells, but they did not use the BARRX HALO that day. Due to the high level of dysplasia, they ended up re-mapping the esophagus during that surgery, setting us up for surgery #4. M was a bit frustrated when he came to after #3, to learn that treatment had not begun.

So, today was the BIG day, surgery #4 and the first round of BARRX...and today we hit another barrier. While these are surgical procedures, they are done under very heavy sedation instead of general anesthesia. Even with the maximum "drug cocktail" today, and permission to go sligtly beyond the max, they could not get M sedated enough to complete the procedure. In technical terms it was, "M became combative and we finally had to abort the procedure." Simply put, though heavily sedated on quite the drug cocktail, M ended up trying to remove the scope and block the procedure. He, of course, has no memory of it thanks to a little thing called Versed®. Note to self: if ever shooting him with a tranq. dart, he's not going down easily. See, we still have a sense of humor around here. And he's quite funny when he comes to in the recovery room, always asking for the car keys and today I even got to hear, "He doesn't even have his license Lisa. Gimme da keys!" in perfect Weird Science pitch. You never know what he is going to come up with.

Now M's won a trip to the preoperative anesthesia center, to be cleared for general anesthesia and all future surgeries will be under general. This appointment should take place in the next 2-3 weeks, and surgery within the next 4 weeks. They are eager to get the first surgery down, as the longer the pre-cancerous cells remain untreated, the longer the greater threat remains and grows. We are thankful for such skilled care being nearby, but it makes for an exhausting day full of travel, navigating the downtown area, navigating the hospital system, and just waiting...waiting for surgical prep, procedure, recovery, discharge. I've learned I'm not a very good "waiter." We were both spent by the time we got home, and so thankful my parents offered to watch C a little later. M and I came home and crashed- he woke up for dinner and is back to resting comfortably.

Thank you for all of the prayers and well wishes! More to come over the next 2-4 weeks.

On the Edge...

We must be on to something big, something wonderful, and something just beyond our grasp, because it has all-out sucked around here lately. Better is in store, right?

Update on M:

Went in for radiofrequency ablation surgery on 1/27 for Barrett's...only the doc ended up not doing the ablation while Mark was under, but re-mapped the entire esophagus and took more biopsies. Results due this week, still no word. As a side note, nothing like driving around a very urban area for almost an hour, with closed streets, one-way, and under construction, to find a parking place. And the two armed guards in the recovery area? Nice touch. Then, this week, his left eye (completely unrelated to Barrett's) completely swelled up...saw an eye specialist and he has an ulcer in his iris...so now he is having to put drops and steriods in every hour. Really, we need a break here.

Work has been super, crazy, all-out-chaotic busy. So much so, that I don't want to think about it, write about it, etc. But I will say, something isn't kosher when I've got to spend an entire workday, and evening, on the phone to India to try to fix my work laptop. Note to Fortune 500s- outsourcing your tech support to Asia b/c it is cheaper does not mean it is better.

C- he's an enigma lately. I cannot believe he's turning 5 soon and how rebellious he's become in the past couple of weeks. I now understand why some animals eat their young.

Sadly, our 14 year-old-nephew passed away tragically and unexpectedly on 1/17- there are no words.

So, we're on the edge, but hopefully the good is headed back our way soon. Even in the midst of these trials, I am thankful my husband has one of the top docs in the world treating his condition, I'm thankful we both have jobs in this economy (although, I'd much rather be a SAHM)- it keeps the mortgage paid and the cupboards stocked, and C, well, you know I just love him to pieces, even when he's acting like a nut.

Barrett's Esophagus Treatment Plan

We headed to the major university medical center that we have selected for treatment of M's condition and we were thrilled with the team that will be caring for him. In order to treat the high dysplasia/carcinoma in situ, M will have radiofrequency ablation therapy to eradicate the dysplastic cells. In basic terms, they are going to burn off the bad cells and look for healthy cells to regenerate.

The process is not simple, but thankfully, this new technology has a high success rate. The first surgery is scheduled for January 27th. M will require 3-4 surgeries total, as he has 9cm of damage, and the surgeries will be about 6 weeks apart. While he's not exactly looking forward to that, it sure beats the way Barrett's was treated only 5 years ago- removing a portion of, or all of, the esophagus. While this is a new technology, the selected medical center has been using this approach for 3 years with stellar results.

Outside of the technical information, I was so very pleased with the team that will care for M. They proved to be compassionate and experts in their field, ranked nationally as top docs for this need. What impressed me was the amount of time they took to focus on M, talk through the situation, and ask him what he understands. Wow- we spent 1.5 hours chatting with the team- unheard of in today's "hurry-up-and-on-to-the-next-appointment" culture.

Please continue to keep him, and his healing, in your prayers over the coming weeks and months!