Phase 2 - Procedure Day!

 So much has happened since October 11th. Starting around October 18th, Alan began getting a mild fever in the evenings. his days were fine but around 5 to 7, he would start feeling run down and come down with a fever in the 99 degree range. After a hectic 10 days, Alan went to Urgent Care and was diagnosed with a mild UTI. He started Cipro and we messaged Dr. You's team. We both felt like the fluid pocket in his abdomen had to be infected again. It is the only other time he had an UTI was last December when he had to have a drain placed again.

Cipro worked for a few days with no fever! And then it came back. Dr. You put Alan on high dosage Augmentin on the 4th. The fever went away around the 6th. We got an appointment to go speak with her on the 8th. There we came up with a plan to get Alan through Band Grand Nationals and hopefully Thanksgiving. 

Phase 1 was to continue the heavy duty Augmentin since it was effective in knocking out the fever until after Thanksgiving or whenever it came back. Thankfully, the Augmentin kept his fever at bay through the end of Thanksgiving. On Friday it came roaring back! We were heading back to our VRBO when he started feeling off. By the time we got back to the house, he was running around 100.5. With the nearest hospital over an hour away and not the best for his specific needs, we made the decision to pack up and head back a day early, just in case. Rebekah and I stayed up packing what we could. Alan's fever broke overnight and we were packed and on the road before 10!

Saturday's trip home was long, but mostly uneventful. Rebekah was an amazing help with getting the four of us, our stuff and two trucks. Saturday, his fever maintained around 100.2 range in the evening. Sunday, it came up early, around 1:30 but never got into the 100s! 

Today was Phase 2 Day! We placed a temporary drain in the cavity. Dr. You was wonderful as always. She placed the drain in a different location than last year. She had originally planned to send the fluid sample off to pathology, but today she felt that it was completely unnecessary! The fluid was obviously infected. While there she also found a superficial fissure that she assisted with that will require some nurse skills over the next couple of weeks. We will also follow up with her in 10 to 14 days.

The good news was she hopeful that the cavity might actually collapse on itself with this larger drain in place. The goal is to completely clear out any infection and remaining fluid. IF the cavity does collapse, then Phase 3 will not be needed! SO this is where we need our prayer warriers! We covet your prayers for the cavity to collapse. 

Phase 3 would be a surgery to move some gluteus muscle into the cavity to fill it and hopefully solve this fluid collection issue in the future. 

Right now, we wait on the drainage to either clear it all out and pray the pocket collapses. Pray for good sleep and quick healing of the fissure. Pray that Alan and I continue to be in sync on taking care of his drain and healing.

Grateful

Today was a good, good day!

As Alan posted on Facebook yesterday, 1 year anniversaries don't have a good track record for his journey. The only other time Alan has been "Cancer Free or No Evidence of Disease" was after his original onset in 2017. 

At the one year (April 2018) scan, cancer was back and has been with him up until the MOAS on 10/17/22. So this scan had way more anxiety than any other scan. The girls had been feeling it. We were trying not to worry. And even though our faith is strong and we know God will have glory no matter the results - We wanted good news. 

Well good news, it was! Alan is still cancer free. So we can go into the anniversary of surgery next week with assurance that he is good! 

Alan will stay on a quarterly scan schedule for now. The danger zone of recurrence is still high until after the 3 year mark. He is in such a small group of patients with his type of MSI High mucinous colon cancer that had metastasized to his peritoneum that we are very much in no data land! Because of this, regular monitoring will continue probably until the 7 year post surgery mark.

7 years post surgery... that we even dared to discuss that was incredible. Now we continue into Bandtober with joy.

- Mel 

Before The Real Win

 

“You prepare a fest for me in the presence of my enemies.

You honor me by anointing my head with oil.

My cup overflows with blessings”

 

-Psalms 23:5 NLT

 

God blesses us with good things. He’s the God of feasts, of anointings, of overflowing cups. But don’t miss where King David sang that God blesses us.

 

God does that “in the presence of [our] enemies.” 

 

Right in their face. When our enemies have ambushed and surrounded us, God puts on a feast. We sit and eat in peace with our Heavenly Father – our enemies stumped.

 

You see, God doesn’t always take our enemies out of the picture. Not on this side of Heaven. He gives us life and peace despite them!

 

You know your enemies. You can feel them breathing down your neck. But if you’ll worship God with your life, God will bless you.

 

How true that is for me. God didn’t decide for my cancer treatment to work. Instead, he chose a different path. Over eleven months ago, I had what my doctors called the “Mother of All  Surgeries.”

 

The surgery came by its name honestly. Recovery lived up to it.

 

Good news, bad news. Good news: I’m cancer free for the first time in over five years! A second scan has now confirmed it. I can also do nearly everything I once did. Bad news: I can’t do as quite much as I used to. I get fatigued faster. For the rest of my life, I’ll also wear an ostomy bag.

 

Cancer, my old enemy, still makes its presence known. Vegas odds are that my cancer will come back, maybe sooner rather than later. Any treatment at that point will be experimental, so my odds in the fight would be unknown.

 

Yes I live, but I keep on looking over my shoulder for my old enemy. Even if cancer isn’t demonstrably inside my body now, it’s still part of my life.

 

But still, God keeps on blessing me.

 

My girls’ wounds from the cancer fight are just starting to heal, although the process will probably take years. Melanie has hit her stride in renewing herself. Rebekah has launched to Texas A&M to become a new woman, focused on excellence and God-centered relationships. Audrey continues our family’s legacy in The Woodlands High School’s marching band, loving on the younger students. 

 

We have built memories. My marriage has grown. I am truly blessed.

 

All in the “presence of my enemy.” 

 

Paul knew all about it. At one point, Paul’s enemies had him “severely beaten” and tossed into the “inner dungeon.” His feet lay clamped in stocks. Darkness surrounded Paul near midnight – and in that dark moment, God set the table.

 

The Lord of Heaven’s Armies thundered into the darkness and gave Paul the joy to worship. And Paul expanded his battered chest to belt out praise to the King. 

 

It’s all in Acts 16:16-25

 

Some of my darkest hours, like Paul, have fallen overnight. Nights at MD Anderson shackled by fresh, extensive surgical trauma and more tubes than I’d like to count. Sleep wouldn’t come to me, but the Lord did! God’s peace broke through the discomfort and the fear that my cancer still lived inside me, and He brought unexplainable peace. He also brought worship.

 

My circumstances couldn’t hold back the King. Neither can yours.

 

Paul knew that real joy has never been about circumstances. Are you comfortable? Are you secure? Those don’t bring joy; living in Christ does. Paul wrote:

 

I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do all things with Christ, who gives me strength.

 

-Philippians 4:12-13

 

Paul got it. No matter what the table sitting in front of him looked like, Paul knew that the Lord would set it for feast in the presence of his enemies. Paul trusted that God would give him the “strength” for it. 

 

We, too, can take God at His word. 

 

Bright-Eyed in The Presence of The Enemy,

-Alan

2 AM - God never sleeps!

Here it is - it's anniversary time! Trauma comes back as a reaction. And it is. Saturday was 1 year since the MOAS plan began forming. And a month and a day later the surgery and recovery we could have never anticipated. 

I haven't written since April. Truthfully because I haven't wanted to face the trauma last year has left. God has been reclaiming me and our family.

But I placed parts of last year in a box deep in my heart and have chosen to ignore it. Because if I face all the fear, all the pain of last year, I'm not sure I can take it. It may shatter the box I've put myself. 

So I'm sitting here on my closet floor at 2 am, nauseated trying to write the words I know God wants me to write. 

My one kid is learning to fly from a short distance away. She has come so far since last year. But our bodies all feel the anxiety. Even not in the house, she asked about scans on Saturday because her body knows it's time. Scans are mid-October. 

My other kid is still trying to survive the joys and pains of high school! Which let's be honest we all have some level of anxiety looking back. Homecoming is now less than two weeks (a stressful time on all) and yet in our house it will probably forever be associated with the MOAS. Alan missed homecoming last year because he was 5 days post-op. So here goes another HUGE trigger. 

Audrey struggles more than she will ever let on to anyone. She's my tough kid. She takes on everyone else's fears as her own. Her empathy for others is awesome, far greater than mine. But now, this moment, right now, she struggles. Her body reacts to the anniversaries and the triggers from last year, possibly without her full recognition of it. That's a HECKUVA depth of emotion and trauma for one 15 year old.

Alan is in the mode of trying to do everything -and I mean everything - he missed last year. Because he epitomizes living life not knowing if tomorrow will happen. So he exhausts all of us, trying to do all things and be all things he wasn't last year, never knowing what next year will look like. 

Society takes tomorrow for granted. They assume it's coming. We have all four learned that there are no guarantees. And it's scary as hell that we could face that future again. And the triggers are almost too numerous to list at this point. So many dates of significance in a 6.5 year battle. It use to just be Spring dates with a couple of fall or summer ones. But because of last year, we can't flip the calendar without hitting a trigger. 

So why am I sitting on my closet floor nauseous and crying? Because isn't that normal?

Nope just another side effect of cancer in our lives. 

Lord, as we cope with this fall and all the triggers associated, please draw each of us closer to you. Help Alan to realize he doesn't have to be super human. He's here and that's the best gift we could ever ask for. Thank you for the joy Rebekah is allowing herself to experience in this new life phase. Help her to continue the growth visible to all in her. Lord, heal Audrey. Out of all of us, she has the most anger at cancer and the most trauma. Living life with the fears, the treatment realities (most of the lingering ones we don't discuss with others), and the pain she has since 8 is hard on a teenage girl. NONE of your peers get you. LITERALLY NONE. And it's not like 15 is easy without all this. Heal her heart, heal her back (totally different topic) and help her be closer to a "normal 15 year old" and not a "kid of a cancer patient 15 year old." 

Lord for me... okay, I give. I've avoided it for months. I'll take last year out of the box piece by piece and start to deal with what You want me to process through. It will suck! And it will hurt! But okay, I give. I'll let You actually Reclaim Me, all of me, even the parts I have been avoiding!

And that includes posting the blog post he gave me a month ago - tomorrow as I really should sleep...

Recovery Day 191

BEST DAY EVER! Yep! Hands down it was the most awesome Date Day at the MDA! 

CT Scans: Scans show NO EVIDENCE of DISEASE! Scans look so good! No concerns, no areas to watch! Seriously, the best scan in 6 years and 3 months. 

Blood tests: okay so this is trickier. Basically, they are GREAT! BUT the catch, they have literally ALWAYS been great. The entire recurrence has never shown any signs of cancer in his blood! Now that's great news as it isn't traveling through his vascular system to other organs and areas. With his tumors' mucinous nature, it makes it more unlikely to shed cancer DNA into the blood stream. His tumors traveled through the peritoneum. The plan is to keep watching these but with the caveat of knowing they have been false throughout his cancer history. 

Plan forward: Repeat CT and blood work every 3 months for 2 years. If still clear after 2 years, it will decrease to every 4 months for a while. 

His glucose is something we are going to test again in a month. It appears that the immunotherapy may have cause some slight issues with his pancreas. We are going to see if his glucose is still higher than preferred in a month before taking any further action. 

Other than those two things, Alan will continue to be monitored by Dr. You for all previvor scans and tests for other original onset Lynch cancers. We want to avoid any other original cancers and keep this one from coming back for Battle 4. 

Thank you all for the prayers. Now we focus on Rebekah's graduation in 24 short days. So grateful he's here to enjoy this precious time. 5 years ago, we were terrified this wouldn't be the case. BUT GOD!

Recovery Day 159

So Wednesday was a date day at MDA! All in all it was a great visit on some lingering side effects. Have another visit on Tuesday for a different doc and set of side effects. While downtown we tried to see Dr. Morris about the CT DNA Test results and trial! Unfortunately we didn't get to see him but we did end up getting a call this week.

So two key things for all of us to remember. As of this moment all cancer was removed with his MOAS on 10/17. Second, we have no reason to think he has active cancer. 

Dr. Morris, AKA Dr. Dude, has been Alan's oncologist since we first got to MDA in 2017 and has been fighting for Alan the whole time. A wonderful suggestion from our dear friend, Linda Nelson, Dr. Morris reminds us of Doogie Howser, he looks about 15 years younger than he probably is!

In 2018, Alan was kicked out of the immunotherapy trial because of a MDA error that perforated his bowel and Morris fought to get him back in and let the head of the trial know exactly his thoughts on the matter when he ran into her on the elevator. Also in 2018, when others on the GI Team of geniuses wanted to stop treatment due to massive pseudo growth, Morris fought to keep him on treatment! That fight allowed him to keep on the drugs and the results to show that treatment was in fact working. 

Dr. Morris has consistently been the most positive and encouraging doctor of Alan's entire team over these 6 years. While Dr You (Big Sis) is a badass and Dr. Fournier (Wise One) is probably the best and most humble surgeon I've ever known, Dr. Morris always finds a way to give us hope. 

Being transparent, I have to share. I struggle to believe his optimism anymore. He wants the best for Alan and for us. So in May 2017, when he said it probably wouldn't come back but if it did it would be between years 2 and 5, I believed him. In Oct 2020, when he said the remaining tumor was probably all scar tissue and if it came back, we would just hit it with the immunotherapy again to finish it off, I believed him. In Mar 2022, when he said that the low dosage immunotherapy (nivolumab) should work, I believed him. In July 2022, when he said that adding the high dosage immunotherapy (ipilumumab) should knock it out, I believed him. In Sept 2022, when we agreed it wasn't working and a resection surgery with a HIPEC (MOAS) was the way to go, I believed him. 

Right now I still believe him. BUT not because of Dr. Morris. You can see from the above paragraph that he is a mere man! He is a doctor, trying his damnedest to save my husband's life. Time and time again, he is doing everything he can from cutting edge meds to the surgery to end all surgeries. He wants the best for Alan and for me and for our girls. BUT he is a mere man. And sometimes science doesn't always work. Science is simply the act of testing theories time and time again. 

I believe the MOAS was the right thing because I believe in the ONE TRUE GOD. And our Lord led us through these last 6 plus years of cancer. And He isn't done with Alan or our story. The Lord isn't done using this story to bring Him glory. 

So back to the call. The therapeutic vaccine trial is no longer an option for Alan. The lab involved in the trial can't seem to get the tests to run well enough on Alan's mucinous tumor. MDA can but the lab officially involved in the trial can't. So Dr. Dude has been fighting (once again!) for the last couple of months to get the lab more sample and then fighting to get results from MDA's lab allowed. All to NO avail. The additional samples failed. And it will potentially compromise this phase 1 trial to have data from another lab. So Alan is out. 

Dr. Dude will continue to run the same testing protocol through MDA to keep a closer eye on Alan. To find any mutated tumor cells in the blood stream before we can even see a visible tumor on a scan. He will continue to scan and run these tests on a 3 month rotation. 

BUT we aren't without hope without the trial because remember what I said we have to keep in mind. As of this moment we know all cancer was removed with his MOAS on 10/17. Second, we have no reason to think he has active cancer. 

So we continue to operate as if he is cancer free. We will not discuss other potential treatment options (not that there are many). Because right now that would be living like it's back. And RIGHT NOW, it's not. We will explore those options IF we need them in the future as who knows when we might need them and if any available now will be the same IF that time comes. 

It's taken us some time to get to the point of saying that. And I ain't gonna lie, I am scared. Fear is very real and hard to push out of my head. So I cling to what is and not the what if scenarios that Satan keeps bringing to mind. 

We covet your prayers to keep cancer from returning. We covet your prayers to keep our minds focused on THE TRUTH of God and not on the lies of Satan. 

We should know more sometime in April. In the meantime, we ask for your prayers that the side effects go away and he is able to no longer deal with them but be his whole, new normal self. 

-Mel

Recovery Day 147

Sorry for the lack of update. There really hasn't been anything to update. For the most part, Alan's recovery is slow and steady. He is at a "new" normal. He is back working full time with a couple of days remote. He's going to the gym some to rebuild his strength. Losing 35 lbs, most of which was muscle has left him on a mission to regain that strength!

Right now we are navigating follow up appts on some lingering side effects of the surgery and the HIPEC. They happen over the next few weeks. 

Besides that, we just make allowances for the fatigue from long days or weeks. We have learned that when he has an especially long day or week, he needs more rest in the evenings or downtime on the weekend. While that is challenging with two active teens and their activities, they are wonderfully helpful and understanding. 

Dr. Morris and the trial team are trying to figure out what is going on with the CT DNA test. We were suppose to have results at the beginning of the year, but still do not. From what we have gathered from the messages with them, Alan's mucinous tumor is providing major challenges for the trial team. We are hoping they get the issues resolved soon and take a new blood sample since the blood sample they have is from 11/18, almost 4 months ago. At this point the results from that sample would be outdated. Please pray with us for clear answers soon. 

For those of you that don't remember, the trial takes his tumor and spins it up to separate out all the mutations and then they spin up and compare his blood samples to see if they have any of the same mutations. If not, yay - no cancer currently! If so, they begin the process of developing a therapeutic vaccine tailored to him specific mutations. This will take 4-6 months to create. Then they give him the vaccine in conjunction with some immunotherapy and other drugs. 

The waiting game to see if he really is cancer free is frustrating. While we wait, my hair continues to have blue for colon cancer awareness.

-Mel

Recovery Day 103

Whelp! We crested 100 days post surgery! I am so proud of Alan. His attitude has stayed amazing! He has dealt with the ups and downs of this journey far better than ANYONE would. And he will not hesitate to tell you where it comes from. His joy comes from The Lord. From his daily walk with Him. From his constant reliance on God's strength and not his own. 

Thank you all for the prayers! On Tuesday Alan had another CT to see the state of things. In this it was found that there is in fact still a collection up high in his front. Two weeks ago, the IR doc said it wasn't there. But three weeks ago had been 5.4 cm by 3.5 cm and this week it is 2.8 cm by 1.8 cm. So the IR doc was just in the wrong spot, like I suspected. Not commenting on my full thoughts!

The pelvic collection that drain was in went from 4.6 cm by 4 cm to 4.6 cm by 2.7 cm. Dr. You came up to The Woodlands yesterday for our appointment. We love it when her appointments are up here!

She had spoken with Dr. Wise One (Fournier) and he told her that now that Alan is fever free and infection free, he would leave the fluid pockets alone. 

The wonderful Dr. You who we adore REMOVED the drain herself in the exam room yesterday!!! It was such a glorious day. Seriously I cried. It's been so long and so hard emotionally, physically. I know most people don't understand that at all. And I will probably write more some day about the actual day to day challenges but right now we are going to simply celebrate. 

After all was done with the drain, we got to  talking about Alan's trip next week with Rebekah to the University of Alabama. That started a discussion about Rebekah wanting to be a genetic counselor, Lynch Syndrome, and her turning 18 and getting tested before too long. 

I loved her desire to help our whole family. The Lord truly gave us an incredible team at MD Anderson. As we walked out, Alan skipped a couple of times with pure joy!

3 Months

Thank you Lord, surgery was 3 months ago today! A whole quarter of the year post surgery is behind us! Thank you Lord that means he is a quarter of a year closer to being back to full strength! Thank you Lord this also means a quarter of a year closer to our new normal - whatever that will be! 

God showed off late last week and I am delinquent in telling of His praises!

Monday we had a plan. Thursday God prompted rapid action. Alan got a call late afternoon asking him if he could do the drain procedure Friday around 1:30 and blood at 12:30. No hesitation in his yes. 

We scrambled to get Audrey covered for her appointment (which again God worked out as the provider had to cancel due to illness)! And changed around our Friday!

Friday God showed off the MOSTEST! I know, I know, but I had to!

First they got us in even earlier which is good since he can't eat on procedure days! Then I ended up getting Dr. You on the phone with the IR Doc. I just didn't believe him. I couldn't see how. I mean I know how, but I didn't think God had done what the guy (Dr. Matswalli) was telling us! Neither did she until she was looking at the images on her computer while talking to us all!

The drain didn't need moved! The pocket was smaller and had shifted to where the drain was in the dead middle! Also, when he inserted dye, there was no evidence of any problems! 

The front pocket, where he needed a new drain was practically GONE! This pocket had been much larger than the pelvic one a week prior! Enough so that we were all super concerned on Monday. BUT no, God had taken care of it. Matswalli was able to needle aspirate 6 ml, leaving 1-2 ml. But felt very strongly that a drain was unnecessary!

Yay God! What an awesome, incredible God! So Alan doesn't have more drains than brains again! 

Since Friday we have been busy with senior stuff or family commitments, plus I haven't been feeling well for a couple of weeks now and Sunday was particularly not great! So I apologize for the late update. By Sunday night, I decided that an update at the 3 month mark was better anyway!

Prayer Requests

• The last drain has to go before 2/2 when Alan and Rebekah drive to visit one of her top two colleges again. 
• Continued healing for Alan
• Clear answers on my weird medical symptoms
• Anxiety triggers for girls
• Stress management for Melanie
• Our hearts as we continue to wait on the CT DNA test results

- Mel

Recovery Day 84

This is the song that never ends! It just goes on and on my friend! Some people started singing it, not knowing what it was. And they'll continue singing it forever. just because... This is the song that never ends!

That sums up the last 12 weeks. Yup, 12 weeks. 12 long weeks since surgery. 

I have updated in a while because there just hasn't been much to update. After our meeting with Karen, we have just continued to flush and measure the drain twice a day and doctored/monitored the new wound in the incision. 

Early last week, Alan sent two emails! The first was a long detailed email to Dr. You. He outlined the output from the drain, the continued fever, and any other symptoms. This resulted in a CT Scan Friday afternoon and appointment with Dr. You today. 

Dr. You had become by far our favorite of the team. She is just as frustrated as we are. Wednesday will be 4 weeks since this drain was inserted. CT showed that half of the pelvis fluid pool is emptied. BUT the drain is needing to be moved. It's now past the remaining fluid. So they need to adjust it. 

Additionally a second and larger pocket of fluid has presented itself. It is the source of the wound in the incision. So while Interventional Radiology is shifting the current drain, they will place a second drain in the current wound to drain that pocket. 

After the pockets are more drained, she wants to do a retrograde study. That means to insert contrast into the drains and let it lead to the origin of the fluid. She is just as baffled by what is going on as we are. She is convinced there is a source somewhere. So we, three, are determined to find answers to this infection. 

We shared many laughs with her! My favorite was when I said that we would need to come by whenever we see IR for the new drain to get the suction bulb. She responded with, no we will just give you the bulb; you know what to do! 

So that's the plan forward for the infection! 

The second email sent last week was to Dr. Morris. The CT DNA results aren't back and we were wondering why. The first tumor sample sent had inadequate cellularity. So they are having to redo the tumor analysis and then the blood analysis. So who knows when we get those results now! 

In general, today we had hoped to have a plan for drain removal and instead he is back to "more drains than brains!"

Prayers Requests:

1. Quick IR Appt for drain insertion and drain move
2. Quick fluid removal
3. Clear picture of where the fluid originates. 
4. Patience
5. Patience
6. Patience
7. Patience
8. Patience
9. Patience
10. Life stuff

-Mel