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

The Race...

... To surgery!

This journey has been a marathon and a sprint depending on the day, the phase, the view. Overall it is a marathon, but we are in that phase where you are sprinting, hopefully towards the finish line. 

Today Alan began radiation down at the Med Center! As for how he's tolerating it, it's way too soon to tell. The calendar rapidly changed as appointments started populating on MyChart last week. Anyone who has ever been a patient or caregiver with MDA can attest, it can be a whirlwind and overwhelming as they start scheduling things. Even having walked this journey for just shy of 6 years, last week's flurry of dings of more and more appointments caught me off guard. 

Tomorrow we are down there together to handle a check in with his radiation oncologist, radiation and then the consultation with the peritoneal surgeon. The last one is the one I dread. Surgeons are different from what we've dealt with so far. They seem to be more worst case minded and doom and gloom. Oncologists (or at least ours) seem to be super optimistic and rainbows, hearts and flowers! Okay maybe not as overtly fluffy as I make it sound. But you definitely see and feel the difference. 

The rest of the week is "just" daily radiation until his MRI on Saturday. Next week is fairly full with appointments Tuesday, Wednesday, and Friday. Then a weekend of rest prior to the big day! 

Sitting here in my war room, I am wondering why I am posting. I think it's more about me working out my feelings. Emotions are a great passenger, but they aren't allowed to drive is a quote I love but have probably said too much lately. I still don't think I've even begun to process my emotions since the scan results. I've been in manager mode. Heck in some ways, I've been living in that mode since February's scans. And definitely since March 7th when the results of his biopsy came in. 

I'm scared, like down to my bones, scared. I know all the spiritual things. I know God's in control. And He works all things together for good. I know He's a good, kind, loving, gracious God. And not only do I know these things, I believe them. Like deep, deep belief in them. I've written in the past how God is big enough for us to yell, scream and be mad at Him. He gets you right where you are. No matter what your circumstances. 

So please don't preach to me in response to this post. I promise my relationship with God is still good because He's meeting me exactly where I am. 

And that is scared, isolated, hurt, angry, impatient, grateful and hopeful all in one.

I am scared of the impacts of surgery. I am scared for his recovery. I am scared for what "normal" looks like after the surgery - not that we've known normal since Jan 30, 2017 - but even with cancer, you settle into a cancer version of normal. I am scared that surgery won't get it all. I am scared the trial will take too long to start. I am scared the trial won't work. I am scared I will lose my husband. 

I am isolated. I am the parent they get angry at because they don't want to get angry at him. I am isolated because there isn't really anyone that has walked our specific journey. I am isolated because of not feeling like I can truly share all the challenges with very many. I am generally an open book, and I feel like I must protect the three of them keep some things only to me. 

I am hurt and angry that we are STILL fighting this long battle! I am also grateful and hopeful that we are STILL fighting this long battle! I am hurt and angry that my children are scarred by cancer. I am hurt and angry that I am scarred by cancer. I am hurt and angry that my already surgery scarred husband has to go through another more difficult surgery. I am hurt and angry that the most incredibly awesome man of Faith is still fighting this battle.

I am impatient for his healing, for his miracle.

I am grateful and hopeful for the new trial. I am grateful and hopeful for surgery. I am grateful and hopeful for all God is doing around us. I am grateful Alan is younger and in good health (except for that pesky cancer thing). I am hopeful because he is younger and in good health. I am grateful for some of the most world class doctors! And for the most INCREDIBLE medical facility right here in Houston! I am hopeful that those amazing brains at the awesome facility are able to heal Alan. I am grateful that my children have a deeper appreciation for their faith, others' trauma and for their self-awareness. I am hopeful that my children will grow into amazing, empathic adults with an incredible passion for whatever they do with their lives. I am hopeful my children will love deeper and appreciate every moment God gives us on this earth.

Lord, thank you for being a God of the details, a God of the emotions, and a God of TRUTH. Lord, thank you for going before us in the coming weeks and for carrying us through it. Lord, thank you for being right here with me through my fear, isolation, hurt, anger, impatience, gratitude and hope. Lord, be with our girls. Lord, heal Alan. Lord, thank you again for loving us each exactly where we are!

- Mel