Recovery Day 1 Evening Update

Tonight was UIL Region band competition for our girls and TWHS Band. I am so grateful to our band framily for their support of the girls, Alan and I! Tonight for competition some other framily joined to love on the girls. Thank you ladies for coming and watching with me. 

Always thinking of others, true to his core, Alan insisted that cancer would not take anything else from our girls and that I would still attend every competition. So tonight I left him, watched the best HS Band on the planet and came home to actually sleep. 

Dr. Wise One came by and said he isn't surprised at the small struggles Alan has had today. He said he expects tomorrow to be similar if not worse. Coming off of the anesthesia and with the epidural, Alan's blood pressure plagued us for most of the day. He was running low already and then when he would stand to try to walk, it would bottom  out and cause lightheaded was making it impossible to stay standing or to walk. 

After multiple attempts, they tried tapering back some on the epidural, reducing it by a third. This did in fact help enough that Alan was able to have two small walks this afternoon. He is in no way ready to run a marathon but I am sure in no time, he will be! His attitude has continued to be awesome. 

The other side effect of the anesthesia and pain meds (not to mention having gone through such MASSIVE surgery) is that his body is exhausted. Conversations of any length take a toll on him. He struggled today to keep his eyes open during interactions even as short as 5 minutes. This too got a little better with the reduced epidural meds. 

So right now we are figuring out that fine line on how to keep his pain reduced and to stay awake to do the things he needs to in order to get better and break out of MDA eventually. 

He did do super well with his breathing exercises! He also sat in the chair all day! Super job and stood roughly every two hours to either try to walk or to walk! So he met 3 of the 5 goals for the day! Tomorrow we will be shooting for the same goals.

I will update in the morning if anything overnight to note. Otherwise I may just update at the end of the day. 

Thank you all for the texts and calls. Please understand if I don't respond right away, I will eventually. Alan may not be up to communication with the outside world until Friday. We will just have to see! We take things day by day and based on how he feels at the moment.

- Mel 

Recovery Day 1

Alan has been moved to the Transitional PACU. This is like a step above a regular floor but a step below ICU. Dr. Wise One (Fournier) sends his patients here for 3-4 days because they have specific protocols for dealing with HIPEC patients that are more than a normal floor can handle. 

There are five patients in our unit, with three nurses. Two of the patients are Dr. Wise One! Another I would ask you to work for patient J who had his second craniotomy for metastatic melanoma. I had the pleasure of speaking with his daughter yesterday in the waiting area and now we are here in the TPACU together!

The goals for today: 

• Standing 5 times
• Walking a few steps 5 times
• Sitting up in the chair most of the day (doesn't have to be awake)
• Breathing exercises - two things 10 times an hour each!
• Pain management

He's been in the chair since about 6:30! He's doing awesome! He's stood twice, once to get in the chair and once since! So fabulous progress. 

Please continue to keep the above in your prayers as well as no complications, like infections at the drain sites or incision. 

I'll try to update once or twice a day. 

- Mel

Almost Done!

6 pm update:

They started the shake portion of the shake and bake around 4:30. It is a 90 minute process. So when they finish that they will transition him off that, which is "a big transition" to begin the ostomy. 

8 pm update:

Dr. F came by. There was a 2.5 cm mass in the omentum on the left side. Pinprick spots on the small intestine that were able to be scraped off. His spleen had an implant of some kind so it was taken completely. His liver had ONLY a cyst that was removed. Nothing on the gallbladder, pancreas, or kidneys!  The left peritoneum had suspicious spots and had been location of Marvin and K so he removed it completely. And his belly button had a small hard spot behind it that might be cancer so it is gone too! The PCI score to determine if the heated chemo was needed was at max an 11 but maybe less once pathology is back. After removal, they score based on what is left, 0 to 3. 3 being 2.5 cm worth left, 0 being nothing visible left. Dr. F rates Alan as a 0. The shake n bake went well. He tolerated it very well. 

Nurse called to update. Dr. Padilla is working on closing him. It's complicated and involves moving his abdominal muscles. He is still doing well. If Dr. P doesn't finish before 10, someone else will call and update me. 

Midway update? Maybe

It's about midway through... maybe. 

They took him back right at 7 am. We were here at 5 am. No traffic but a nice bit of rain on the way down. 

Surgery "began" at 7:56 according to my text alerts. And the nurse said Dr. You (Big Sis) got started at 8:37. All was good at the 10 am update. 

The 12:30 update was that Dr. Fournier (Wise One) had sent four sites off to pathology. One was the spleen (expected), one in the left paracolic gutter (one of the recurrent tumors were previously there), one in the "lower quadrant," and the omentum (again expected).  

I was surprised to hear that they had his surgery slated to go until 10 pm from the nurse, but she emphasized that it might not be that late. 

Everything has been going as expected and his vitals are strong. Thank you all for the prayers. I will try to update again when done. But seeing as I have been up since 3, it kind of depends on how late surgery runs if I will have the energy.

Prayer Requests

I'm sure this is not an exhaustive list, so please pray as the Lord leads. But in case you want our specific requests. 

• We will be a witness to everyone we encounter. 
• Doctors' hands to be precise. 
• Wisdom for the doctors as they are making decisions. 
• All cancer to be removed. 
• No surprises in surgery. 
• No complications in surgery. 
• Girls minds to stay occupied and not to worry while going about their day. 
• Girls to stay safe and not be distracted in driving or in band (esp. with props). 
• Peace for those that are unable to be present due to visitor restrictions. 
• Calm in midst of busy week with homecoming and band competition. 
• Travel mercies driving to and from med center. 
• Wisdom for Melanie on physically where to be when and what help to request and when. 

Cold Brew Shake 'N Bake MOAS

Conversation went like this:

Dr. Friend: I did a couple of your surgeries in residency. We called it a Shake 'N Bake!

Alan, laughing: So wait, mine is a Cold Brew Shake & Bake! Ya know, since they lower my body temp to 38 degrees.

Dr. Friend: hahaha, yeah sounds about right!

Me: just sitting there shaking my head at them. 

So now the MOAS has a second name, Cold Brew Shake 'N Bake!

Yesterday and today have been full of appointments, while last week and Monday were full on insurance and MDA finance details. 

So last week we discovered that our insurance is a grandfathered plan and doesn't allow for the "standard of care" items the trial needed covered by insurance to be covered. In fact NOTHING associated with clinical trials or experimental drugs is covered. But in order to get on the trial, Alan had to be enrolled prior to surgery which meant financial clearance had to be achieved first via insurance or cash pay. So we have spent several days working out details on that. I am so grateful to The Lord for His provision of options. Most don't have the options I do since I still own a business. For the moment we have agreed to cash pay (not that we can really afford it long term) and put down a deposit, but will be making some insurance changes come Jan 1 for Alan. Again at this point I am just grateful we have options. 

My heart breaks for those that don't and for those on my current insurance plan. Cancer treatment is and will continue to need trials in order to eradicate it. Any plan that excludes standard of care during a trial is short-sighted and sentencing people like Alan to just wait around to die. This is wrong! 

Sorry, off my soapbox. Yesterday was a full day of appointments. We consulted with the ostomy nurse gaining knowledge on ileostomy and colostomy. We don't know for sure yet if Alan will have to temporarily have one nor do we know which one if he does. So everything we learned is just theoretical at the moment. Next Monday night, while he is probably still be out of it, I will learn more and start figuring out what needs to be done. 

After more blood work, we waited (Alan slept) on our appointment with Kevin, the anesthesia PA. Once back, it was quick and easy. We did talk more about the resection when the bag goes away (if he has to have a bag). That discussion left us with more questions for Dr. Big Sis. 

With every appointment, the reality of how major this is hits. From side effects, to complications, to recovery facts, to surgery details, all show just how serious this is. Last night as we were going to bed, Alan said, had I known, I still would have done it, since treatment isn't working. But dang, if treatment was working, uh no way! 

This morning's appointment was with Plastics. He will be the one to close Alan up and oversee any wounds or infections at the incision site. He explained how it is possible that with a "Shake 'N Bake" that bloating or expansion of the organs could occur and that he would be watching for that. It was funny today to hear the words Shake 'N Bake from one of the doctors on his team. He proceeded to praise Dr. Wise One and Dr. Big Sis, saying he has the easy job. He laughed when Alan said it was going to be a party in the OR. 

So my burning question after meeting with Dr. Padilla. The plastics doctors on TV always have good hair. Is that a requirement in Med School? In order to go into Plastics, you must have good hair? While Dr. Padilla is obviously still young, he shall be Dr. Good Hair from this point forward. 

Then as we walked away to get a snack before Dr. Big Sis's preOp, Alan had one of his wise takeaways from Dr. Good Hair. Post Op he will have "More Drains than Brains." And I joked that I am going to have to label each drain with a doctor's initial to know who to call if we have issues. His markings from radiation are now gone. His markings for the ostomy are set. So what's a little more sharpie on the body! Sorry, but if you've followed our journey at all, you know we have to find things to laugh about. 

Dr. You (Big Sis) had a long day. I don't know what her morning was like but she was 3 hours late for our noon appointment. After a quick in office procedure, we went over a lot of details regarding the removal of the tumor and resection. There are so many moving parts. We have plans A, B and C based on contingencies on how surgery goes. Everything depends on the blood supply to his remaining colon. We also discussed the potential timing for the second surgery to undo the temporary bag should he require it. 

We also discussed my idea of labeling the drains after she told us he would have a drain from her as well. She said she asks the interns to do that but "their interns" and often don't. She said it would be very smart and then we all joked Octopus Drain Boy! 

Friday brings his Covid test and virtual meeting with the coordinator for everything. Prep for surgery on Sunday and then SURGERY DAY. 

Please pray for his colon to have good blood supply and be save-able in surgery. Please also pray for the precious next 4 days - that we will have great family time and get done all we need to before surgery.

Thank you all for walking this journey with us. It's been a long year; heck, 5 plus years. Thank you for loving on us and caring. Thank you for the texts, prayers, and well EVERYTHING. 

- Mel

MOAS - "Mother Of All Surgeries"

Yesterday was a LONG day at MDA. Appt with Dr. Ludmir (Phineas!!) was quick. He basically said Alan will hate him next week, but this week shouldn't be too bad. So we are mentally trying to prep for that. His radiation dosage is pretty high since it is such a short course. 

We had fun discussing "good music" - Journey, Aerosmith, any rock prior to 1990! He then told Alan that we are basically going old school on his treatment plan with the radiation and then surgery quickly after. So while he will be cursing Dr. Phineas at the end of next week, surgery will happen so soon that he will quickly switch to cursing Dr. You (big sis) and Dr. Fournier (nickname to come)!

Radiation was super fast and no problem. Loved that we ran into Roy when heading to see the doctor. His spirit uplifted us so much! Some people just have a joy that is contagious! He has to be majorly blessing people at MDA like he blessed us that many moons ago at 21 Waterway! (See Alan's independent Facebook post about Roy!)

Next up was Dr. Fournier - peritoneal surgeon - he's the wise professor we all had who has probably saved more lives than anyone would ever know but if the more down to earth humble guy! He and Karen, his PA, outlined so much. The time with them was so good. We learned more than we imagined and came away with great hope in the results of the MOAS - Mother Of All Surgeries!

While Dr. Big Sis will concentrate on removing Mooney and Mooney's twin and resecting the area impacted by them, Dr. Wise One will focus on everything else. He will remove the omentum (the tumor sponge as he called it). Then he will scour every surface in Alan's abdomen and remove any peritoneal tumors. He showed us multiple concerning spots on the scan that haven't been called a tumor by the radiologist but in Dr. Wise One's experience will be. He emphasized that CT Scans are notorious for underestimating the number of peritoneal implants. For example, due to a previously noted "cyst," Alan's spleen is very likely to be removed. 

This MOAS is technically called a HIPEC surgery. HIPEC - Hyperthermic intraperitoneal chemotherapy! They remove every visible spot of cancer and then before closing him back up, they lower his body temp to 38 degrees and then fill his abdomen with chemo heated to 104 degrees. They then spend about 1.5 hours - sloshing it around in him - rocking his body back and forth to make sure it gets every nook and cranny! 

The side effects can be pretty harsh and recovery will likely take 8-12 weeks with an average hospital stay of 10-11 days instead of the 4-7 days with his original onset surgery. 50% of patients experience some complications, but most are very minor. 

To put it in perspective, Dr. Wise One emphasized how he doesn't do this surgery on 50% of cases presented to him because it just isn't effective in cases with implants everywhere. There is a grading system and under 20 is likely to have good outcomes. Most cases have a laparoscopy first, not really time in our case. In that laparoscopy, an additional 20% of cases become ineligible due to the PCI score being over 20. He believes Alan fits that criteria even with any underestimation from the CT. Plus Alan has so much GOOD going for him, age, general health and physical fitness! 

Now for the incredible hope, yesterday left us with! He has 2 patients that are still cancer free and unable to qualify for the trial right now, 1 year post op! Without the vaccine trial (see previous posts for info), the average life expectancy is 62 months from the date of surgery with his longest patients making it 9-10 years. That's a lot of time for other treatments! 

We have called this plan, everything including the kitchen sink, the Hail Mary play, and today old school! New hotness (insert Men in Black flashback) treatments have not worked YET. So we are going to kick it with old and busted (Tommy Lee Jones style - again MIB reference)! Old school will hopefully give us more time for New Hotness to be created and work, killing the Alien growing inside my husband! 

Prayer Needs: 

• Entire list from Monday's post
• Girls - hearts, fears, connection within the family, anxiety
• Alan - better than expected recovery, minimal to no side effects, no depression with slow healing process and longer hospital stay with extremely limited visitors, patience with recovery 
• Doctors - wisdom, steady hands and God given talent
• Mel - peace, management of time, schedules, work, appointments, feelings, everything...

Thank you all again for your love and support. 

- Mel