4 Month Scan Results

Here we are. Another January, approaching the 30th. Cancer sucks the life out of everything. We celebrated the removal of Bo; we celebrated the end of chemo. We waited through every check that first year with baited breathe, but everything was good. Then April 4, 2018 came and cancer sucked the life out of the small room we were in on the 7th floor of the main building of MD Anderson in the Med Center.

The last 21 months have had major downs, some ups. Yesterday, Alan had his first CT Scan at MDA in The Woodlands. It’s so nice to have the full center up and running here. So today was date day down at MDA to meet in one of those small rooms with Dr. Dude (Dr. Morris) and get the news.

For the first time, we both slept peacefully. The drive down was uneventful. The waiting room was packed. We both went into the appointment feeling strong, feeling good about where he is. The minute we went into that small little room, all my nerves came flooding to the forefront.

Jocelyn, Dr. Dude’s PA came in, apologizing for the wait and explaining that most of the GI docs are headed to a conference next week. So if we were okay with it, she was going to go over the wonderful results with us.

Today was a MAJOR UP! The tears keep welling up with joy. Jocelyn made it clear that all the tumors shrank. As Alan and Jocelyn continued to discuss the side effects he is having, I poured over paper with the scan results. Only two tumors had measurements listed, which was confusing. When there was a moment, I asked where the measurements of K was. After pouring over the scans from October and yesterday, the conclusion was reached that while K is still there, it is small enough that the radiologist didn’t even pick up on it.

HUGE NEWS! Marvin (left paracolic gutter tumor) shrank 28.9%. K (hemipelvis tumor) is so tiny that it is “insignificant” now! Mooney (lower abdomen tumor) shrank by 9.7%.

From the highest point Marvin and Mooney have shrank by 85% and 60% respectively! But the most impressive to me is the next set of stats. K was non-existent at the onset of recurrence and is practically the same now. Marvin is 40% smaller than when discovered April 2018, while Mooney is 30% smaller!

Friends, treatment is not just working! It’s not suppose to do this. Treatment is exceeding all expectations. Treatment is healing my husband!

We’ve had a dear friend who has texted us literally every single day for this recurrence (over 21 months)! Every Saturday he tells us that we are “Another week closer to cancer free.” Being truthful, these texts have hurt some weeks - on the weeks were it seemed hopeless.

Today when we shared the news, he texted, “I truly believe one day you will hear ‘The cancer is gone!’”

I finally believe this!

It’s easy now to put on a brave face for the girls, for Alan, for everyone who asks. But in the quiet between God and I, the struggles have continued... continued to doubt... continued to fear. We still live scan to scan, writing our plans in pencil. With every good scan, which we have had consistently for a year now, my struggle has lessened, my fears decreased. My faith and trust has been restored a little more. Today, God showed me that He is using this treatment to save my husband. Alan is being a unicorn not only in his cancer and all the other things over the last three years, but also in his response to treatment!

In majority of cases similar to Alan’s the tumors just stall out. BUT God! Only God! Only God could do this! Only God could make it continue to shrink and EVEN start to disappear!!

Thank you Lord! Thank you for this news! Thank you for restoring my faith! Thank you for healing my unicorn!

Unicorn Rides Again

So for those of you who know Alan's cancer story, you know that I have called him a "Unicorn" since this recurrence began 18 months ago today.

Today, today, GOD used his "Unicornness," in Alan's favor.

So at this point in this immunotherapy protocol, the tumors stay stable. There are working theories that the tumors remain stable because the cancer is all gone, but scan tissue remains and basically the masses are just "smoking craters," to coin an Alan-ism.

Well Alan, being a Unicorn, surprised Dr. Dude with not just stability BUT some significant shrinkage. YES, SHRINKAGE!! 15 months in on treatment, and we are still seeing this cancer DIE. Not just hold steady. No, SHRINK!!

As we sat waiting on treatment this afternoon, it was all we could do to hold back the tears of joy, tears of gratitude to Our Lord!

Thank you Father for continuing to work in my husband's body and KILL this cancer. Thank you Lord for this blessing.

Also, Dr. Dude increased the time between scans. Next scan will be in 4 months instead of 3 months! Thank you again Lord for this blessing.

Marvin (left paracolic tumor) decreased by roughly 40%!
K. (left hemipelvis tumor) decreased by roughly 16%!
Mooney (midline pelvic tumor) decreased by roughly 40%!

Marvin K. Mooney, WILL YOU PLEASE GO NOW?!

I remember

Life can suck. My story could be evidence of this. I remember being your normal kid. With normal friendships. I remember having normal experiences. With normal problems. I remember having a completely normal family. But sometimes everything in our own little world changes, and we have no control. We are left trying to fit all the broken pieces together.

I remember my dad saying “I’m fine”. I now know that was a lie. My dad was diagnosed with colon cancer when I was twelve. I remember that I didn’t understand that this moment in my life changed my own little world. I thought that in a few short months my dad would be healthy. So I watched. And waited. I watched a once strong man now pale and sick after every chemo. I waited for the next scan. I watched as he now couldn't get anything from the fridge because with chemo it hurt too much. ‘Like pens and needles’ he told me once. I waited because I knew there was nothing I could do. Chemo was done. My dad beat it. We beat cancer together as a family. This was probably the first time where I had peace. 

Until…. round two. We found more after a routine checkup scan and the cancer had adapted, so chemo wouldn’t work this time. But a new treatment might. Immunotherapy. This thirteen lettered words sounded like magic to me. The medicine would strengthen the immune system to go and fight the disease. The only problem is we couldn’t pay for the treatment and insurance wouldn’t help. Three months waiting to start treatment. By some miracle the company that made the medicine gave it to us anyways. We got started immediately.

My dad’s immunotherapy didn’t hurt him like chemo. He is doing everything and more to be healthy since before cancer. But living on such uncertainty is rough. Words can’t describe it. My dad is doing better and it looks like treatment is working, but I still lay awake at night wondering all the ‘what if…’ or ‘why can’t I ….’. But the worst question of all is ‘What did I do to deserve this?’. ‘Why me and my family?’ Those were the questions that ate me up.  

When the second round cancer started, I began to lose hope in ever being normal again. I lost so many friends because I felt like they couldn’t get me with my problems, if their biggest issue was a bus ride. I felt alone and it wasn’t anyone’s fault but mine for not letting others get close enough to see how broken I really was. I felt like me and my problems were too much of a burden for anyone to help, especially with my family. I felt like they need me to be strong. I don’t know when I realized or if I knew all along that this person in the mirror wasn’t me. I was so much more the shell of a person I had become.

I remember in my science class one day we somehow got off topic, and the teacher was telling us about how waves from phones cause cancer. I don’t think I could ever forget this response: ‘Oh sorry guys I just got a text. Looks like we will all get cancer’. I couldn’t think clearly. Do you not get that cancer isn’t only caused by food you eat or waves but can be caused just by genetics? Are you so insensitive not to think that someone in the room has been affected by cancer if not me? Do you not realize that cancer isn’t a joke it is a disease that kills thousands every year? Do you really think that joking about things you don’t get makes you cool or something because it doesn’t? I always have to calm myself down. Remind myself that they will never get it and it is wrong to wish they could understand me. Then they would have to walk through everything that has happened to me and I would never wish that on anyone. I remember other times when it was someone who knows about my situation and they joke about cancer. That I will never understand.

Life can suck. My life could be evidence of this. I remember when I was “normal,” but I have decided to a new definition of normal. Normal is something we hope for until we realize that are more than everything we think defines us. I am the daughter of a cancer patient as much I am a normal kid.
-Rebekah

The Knot

Today has been a struggle. On Wednesday our oldest starts High School and our youngest 6^th grade. Today the oldest needed to walk her schedule one more time to feel comfortable before the BIG day. However, this left Mom feeling anything but fine. It is the tug of war that is my heart. 

 

Last year, the first day of school was rough. We were only two treatments in on immunotherapy, and I was scared. After a rough bus pick up for Audrey (whole different story), I ended up in my best friend’s driveway a total mess. Bawling like a baby. You see the odds were stacked against Alan. With this treatment, things look good, but we still don’t have long term data. So last year, I was facing a giant unknown. My world was crushing down on me. Truthfully, I was scared that it was the last Back to School we would all have together. A year ago I didn’t know, if he would still be here today.

 

So today, watching and waiting on my high school freshman walk around the hallowed halls of the 9^thgrade campus, my knot of FAITH and FEAR was having a huge tug of war over my heart and my emotions.

 

FAITH would tug and overwhelm me with GRATITUDE. Alan is here. Alan is doing really well right now. Treatment continues to hold these tumors stable or even shrink them slightly more. Gratitude that our lives seem completely normal. Alan is working, I am working, the girls are starting back to school – a normal American family. Gratitude that my girls don’t seem to have the same fears that they did last year at this time. Gratitude that we have continued to get even closer as a family. Gratitude that God is ALWAYS faithful and is WAY bigger than all of our unknowns.

 

FEAR would tug and overwhelm me with WORRY. The WHAT IF’s that no one likes to vocalize would come rushing to the forefront. What if the next scan isn’t good? What if he isn’t here next year? What if another cancer shows up? What if side effects get bad? What if when the youngest starts here he isn’t here? What if… What if… What if “what if” becomes “what is?”

 

Then faith would tug, then fear, then faith, and then fear. I sit here tonight still struggling with this. And I am leaning in to God as much as I can, I am grateful for the moments of peace He grants me in the struggle. But this is my emotional struggle. It may be other caregiver’s struggle too. I don’t know. Maybe patients struggle with this too. Every single “major” moment in the girls’ lives, in his life, in my life, causes this struggle.

 

Most people would have no clue this is what I deal with sometimes daily. As a mom, we push our emotions aside to take care of our kids (the girls have no clue that I held back tears on campus today). As a caregiver, we focus on what we can control to help them heal. As a wife, we focus on loving them with every fiber in us. As a daughter, sister, granddaughter, niece, cousin, etc., we focus making sure all of our family knows how much we love them. As the leader of a team, we focus on making sure they have what they need from us to do their jobs well, on making sure they have the resources they need, and on delivering what we promise to those we serve. As an elected servant, we focus on delivering what we said we would before being in office, on being available to the tax payers, and on doing the absolute best we can with the resources we have.

 

Majority of the time it is easy to shove the knot of FAITH and FEAR back into its dark recesses of my being and to simply focus on the hats I wear or the multitude of laundry or whatever fire is in front of me.

 

Today… today was not so easy. Tomorrow may not be either. And I can almost guarantee Wednesday will definitely not be!

 

So when you see a person in similar shoes to mine, pray for them. Pray for PEACE. Pray for COMFORT. Pray for FEAR to GET the HECK OUTTA THEIR MIND! Pray. Offer a hug, if they are the hugging type. Offer an ear and just listen. Be there. No matter how strong they appear on the outside, there is still the knot of FAITH and FEAR on the inside. No matter how good everything looks at the moment, the What If’s are still lingering in their head. So pray. Pray for them. Prayer helps. Knowing people are praying helps.

 

Here’s to FAITH having already won the battle over FEAR!

Great Great God!!!

Our Lord is sooo good. Alan has had some anxiety over this scan, while I have had peace.  A total flip from our normal state's pre-scan!

We are so grateful for today's news!

All three tumors shrank some. Not majorly but some! What joyous news! We continue to get great news. The immunotherapy continues to work!

Marvin (left parocolic tumor) decreased by 12.5%!

K (hemipelvis tumor) decreased by 3.8%!

Mooney (rectum tumor) decreased by 8.5%!

Marvin K Mooney is working on going NOW!!!

Peaceful Prayers

It's a Scan Week... we can hardly believe it's been 3 months.

For the first time, EVER, in this journey, I am optimistic about this scan. I'm more than optimistic... I'm actually hopeful! 

Thanks be to God for the peace He has given. Thank you Lord for being a Healing God. Thank you Father for loving us even when we are unloveable. Thank you God for being a God of hope, grace and mercy. Thank you Christ for saving us!

We are walking into this week with 3 positive scans behind us. I am fully expecting a STABLE scan. 

A year ago yesterday, Alan had his first treatment, and we received the devastating news that a third tumor had grown during the three months that we had waited for treatment to get started. A year ago to be very blunt, we weren't sure Alan would be here today. 

Today he is here, feeling better than I could have imagined. He is leading our family well. Immunotherapy has been such a blessing from God. It's so different from chemo. The effects have been incredibly mild. And the results have been remarkable. And had it not be for God's hand in our situation, he would not have been on this treatment, and this post would be much different. 

So as we head into Thursday's scan and Friday's results, we covet your prayers for complete healing. We ask for continued peace as we walk through this week. And we praise Him for the positive results He has already given prior to this upcoming scan. We praise Him for what He is continuing to do in our family through this journey. 

Update to come after we get results. 

Thank you for your prayers!

-Mel

Peace

Sitting out on my back patio, watching the rain, just enjoying the peace.

Peace - not in circumstances, not in situations. Peace with life. Peace with each other. Peace with God.

I can honestly say, sitting here over two years after the start of this journey, we have peace.

Alan and I have stretched and grown in ways I never thought possible. The girls have grown in ways most kids there age have never even thought of.

Almost two weeks ago, we received fabulous news. All three tumors are stable. This is his third good scan in a row: shrinkage, stable, and stable again!

We met with the genetic doctor for Lynch Syndrome. We walked away feeling better informed. We have a proactive plan to start a couple of new screenings to catch a few other cancers that Lynch patients are more likely to get. With the girls, we have a great plan for checking them for Lynch after they are adults!

Where we are today - Alan is continuing to get his immunotherapy treatments every other week and will have another scan in mid to late July.

At some point Alan will probably be diagnosed with another Lynch-based cancer, but for the moment, he is probably in the best place medically he's been in the past few years. Ya know, no grapefruit sized mass growing in his colon unknowingly to us.

So we are seizing this moment and enjoying the peace. No matter what the future brings. No matter how God uses this journey. No matter the outcome of our journey.

God is in full control. So we have peace!! We trust Him to guide us and take care of us. Granting us peace. Thank you Lord for peace!