Newtons Never Fight Alone

 It has been almost a year since our last blog post. Who would have thought our world would change so much in that time? A lot has changed in Cliff’s cancer journey as well. As many of you know, at last post we were anxiously waiting for the clinical trial to take place.  During that time, we felt strongly that we should sell our home in Fruit Heights. With our kids married, our house was more than we needed.  We found a place in Layton in a 55 and older community that felt like the perfect fit.  We put money down and began the process of building.  No sooner had we started down the building road that Utah had an earthquake, Covid hit, and because of Cliff’s cancer we were pretty much in lock down. To put salt on the wound, the clinical trial was put on hold. 

In May, we put our house up for sale and sold it two weeks later.  We moved out the middle of June and moved in with Cliff’s mom, who has been so good to us while we have been here. She has shared her love of movies with us while we have taught her how to play a few card games.  

 

In July, Cliff was offered the clinical trial again.  Because of Covid, they would not let me be in the hospital with him.  We were both uncomfortable with that and declined participation until they could lift those restrictions.

 

In September, we received another call asking if we could come in December.  This time they agreed to let me be in the hospital with him. We were thrilled and ready to take the next steps to prepare for the trial.

 

The hospital covers the trial itself but they ask your insurance to cover charges that are typically covered such as CT scans, labs, etc.  Our insurance denied coverage because the charges were attached to a clinical trial. We sent an appeal specifying that these were services that they routinely pay for and that if they didn’t cover them, then Cliff would have to go back on chemo and they would be covering them anyway. Unfortunately, it was denied again. 

 

As always, we had many earthly angels in the form of family and friends step up to the plate to offer help and to even set up a Go Fund Me. This was going to be a substantial financial undertaking and we felt that we needed to consult with Cliff’s oncologist.  He shared with us that results were not as promising as he had hoped and that he would be hesitant to recommend the trial when paying for it with no insurance participation. 

 

It has taken us a couple of days to process our disappointment but we are looking ahead and are ready to continue the fight. I am always amazed at the sheer determination that Cliff displays with this cancer journey. He is brave, positive, faithful and full of hope. It is one of the things I love about him. We will continue to look for trials as it is the only way to find a cure and we need to find one. Not only for Cliff, but for all. 

 

As many of you know, our family motto is “Newtons Never Fight Alone”.  This motto could not be more true as evident with the many phone calls, prayers, words of encouragement, and postcards sent to us the last few months. We want to express our love and gratitude to our family and friends. We consider you our greatest treasures. Happy Holidays! May you find joy and peace in the new year. 

IT’S A TRIAL

Another trip to Houston is in the books….

If you read our last blog post, you may remember that Cliff was offered a clinical trial in Houston, at MD Anderson. On December 27, Cliff received an email from his oncologist saying that the trial was being put on hold. Although on hold, his doctor still wanted him to come to Houston so he could see how the new chemo was working and to talk to us about the trial.  We try not to put all of our eggs in a basket when it comes to Cliff’s treatments, but we had with this trial and we were so disappointed.  

We spend hours in waiting rooms hoping to hear someone call out Cliff’s name. It is imperative to bring along large amounts of Diet Coke, a fully charged phone and for me, a blanket.  Everyone in the room is waiting to hear what their next journey in life is going to be.  Doing well, not doing well, cured, not cured, terminal. You might be surprised to know that Cliff is considered terminal. We don’t put much weight into that word.  I mean, look at the guy, not much has slowed him down.  And by the way, we believe in miracles and that prayers are answered.  

So what did we learn while in Houston?  GOOD NEWS this time.  In three chemo treatments, all the cancer spots have reduced in size, some significantly.  But the best news of all… The trial is back on and Cliff will be the next patient.  We are cautiously excited! We will leave for Houston the end of February, first of March (dates have not been confirmed yet). He will meet with the surgeon the day we get there and have the surgery to remove his largest tumor in his right lung the next day.  At that point they will remove all the good fighter cells, also known as tumor infiltrating lymphocytes, from the tumor and will start growing tens of millions more.  We will come home while those are growing. Two weeks later we will be back in Texas, as the doctor will need to do some base line checks on his health. Two weeks later Cliff will be admitted into the hospital to reintroduce the new fighter cells into his body.  This process will take about 3-4 weeks.  He will be immune compromised, so I will be the only person allowed in his hospital room.  

We will have several trips back and forth to Houston but feel that this trial is worth it.  In the words of Cliff’s oncologist, “this is not a cure, but I believe that the gun is now pointing in the right direction for that to happen.”  

You may be asking yourself, “if it’s not a cure, why do it”?  Cliff has always wanted to be a part of the science to find a cure.  And even if it’s not a cure, but stops the cancer from growing for a time, it is worth it to us.  Oh, and don’t forget, we believe in miracles. Who knows, this may be a cure for him. This Thursday, Cliff will receive his 40th chemo treatment. On Saturday, January 18 he has been fighting cancer for 4 years.  

A friend of ours asked us the other day how we stay positive? Family, friends and God.  We will continue the fight and know that no one fights alone. Thank you for being there for us. 

Roller Coaster Ride

Life is like a roller coaster ride!  The ride starts out slow, you feel secure in your seat, and you are excited to see what lies ahead.  The coaster chugs up the first hill, you can’t wait to get to the top.  You look at your partner and say, “Isn’t this the best? I’m so glad it’s you that is sitting next to me.  You make me feel secure, happy and comfortable in my life.  You are my best friend”. You arrive at the top and the thrill of the view is beyond amazing.  It’s at this point you realize, what goes up must come down, and down you go.  And now you must climb again to get to the top of the ride so that you can once again enjoy the view and thrill that you experienced.  This time, the top is higher up, the coaster chugs along, and you start to wonder if you will ever arrive at the top. Like life, sometimes getting back to the top gets a little harder.  The one thing I can say, without reservation, is that whatever it takes to get to the top again, IT IS WORTH IT!

Below is a letter we sent to our family after Cliff met with his oncologist at MD Anderson in Houston on Friday, November 8.

Arvonne and I are in Houston and saw my oncologist at MD Anderson today.  My cancer is growing in my right lung - two nodules in particular.  It isn't alarming but needs attention.  The largest is now about 3 by 2.5 cm.  We had scaled back my chemo, eliminating Avastin because it perforated my septum, but we will be adding that back as well as another chemo drug named irinotecan. This is intended to beat it back, but only time will tell how well it works.

Dr Kopetz then talked to us about an immunotherapy clinical trial.  He thinks I am a good candidate and MDA is just now introducing it to colorectal patients.  They have had decent success with cervical cancer and melanoma, and they now have their first colorectal patient in the initial stages.  Her results are not yet known.

In this trial, they excise a cancerous tumor, then harvest the cancer fighting cells inside that tumor, then they work some magic to convert them into millions of Tumor Infiltrating Lymphocytes.  This takes 4-6 weeks.  They introduce those back into the blood stream with the intent that they seek out and KILL the cancer cells.  The intended result is a CURE, or at least a period of time where you are cancer free.

The treatment period, after the surgery, is 3-4 weeks.  They would administer five treatments of Interleukin-2, which would drain my body of white blood cells and wipe out my immune system.  I would be in the hospital the whole time, closely monitored for heart issues and any other signs of trouble. 

Several weeks afterwards, they would do another CT scan to see what has happened.  The hope of course is that the cancer has shrunk or has been eliminated.  If the trial fails, I would be eligible to go back to the maintenance drugs I have been on.

If we proceed, I will have to pass several stress tests and meet some other requirements to qualify.  We would basically move to Houston for the time it takes to complete the trial.  Timing will be determined during our visit in January.  At the moment it seems it would be in the March to May timeframe.

The coaster ride continues. It’s a bit bumpy and scary at times but I still look over and say, “I’m glad it is you sitting next to me in this crazy ride we call life. 

Go Fight Win!!!!

Not Typical

It is Thursday, August 15, and we are at MD Anderson.  I’m sitting here watching people drinking their barium in preparation for their CT scan. So many long faces, whispering here and there, but eerily quiet.  There are so many thoughts that flow in and out of my head. Today as I sit next to a heavily textured window, I see that people are walking by, their bodies appearing as moving silhouettes. My mind wanders off as I watch them walk by. A thought pops into my head.  What is life going to be like when we leave this earth? Will the halls of heaven be bustling with people like they are here? Maybe. In my heart, I believe they will. Some days, dying scares me to my very core, but today as I watch the images pass by my window my heart is comforted. Cliff is doing well, I think. We will find out tomorrow when our oncologist reveals what he sees in the CT scan. In the meantime, I am learning to enjoy our life and all the ups and downs it brings. It has taught me that this is really what life is all about and that it is up to us to find happiness in the chaos.  

Friday, August 16.  Appointment with Dr Kopetz....

Have you ever been told that you are “NOT TYPICAL”? That’s what Cliff’s oncologist told him today after Cliff asked him if he thought his journey was typical of metastatic colon cancer.  Dr Kopetz told him that his cancer seems to be indolent and that it reacts very well to chemo.  I really like NOT TYPICAL. Cliff still has cancer in his lungs, but we are seeing some shrinkage and cavitation (the center of the tumor is dying). I think the only disappointment we may have experienced was when I asked the oncologist if he ever thought we could be friends with “NED”.  He gave me a strange look and said, “who’s Ned”?  “NO EVIDENCE OF DISEASE”, I replied.  He chuckled and said, “probably not”.  We knew the odds were against us on that, but one can always hope.  And to be completely truthful, I believe in miracles. So there! 

We have many questions to sort out about the future, but it seems that a path is being laid out in front of us.  For that we are grateful.  "Trust in the Lord with all your heart and lean not unto thine own understanding.  In all thy ways acknowledge Him, and He shall direct thy paths."  

Our next trip to Houston will be sometime in November.  Until then, we will continue on this beautiful journey we call life.  As always, GO FIGHT WIN!

It's a Marathon!

It has been quite some time since we have updated the blog so we will try to summarize what has happened in the meantime.  From October to January, Cliff continued chemo treatments, completing 17 treatments over the past 12 months.  During 2018 we had two changes in our Huntsman oncologist, from Gilcrease to Whisenant to Garrido.  As you might imagine, this has made us all the more determined to follow orders from Dr Kopetz at MD Anderson in Houston.

At our January visit with Dr Kopetz, Cliff was allowed to go on "chemo vacation".  This is because the lung spots had remained relatively unchanged for the last two CT scans.  The plan for follow up was to see Dr Garrido in March, then Dr Kopetz in May.  At the March visit, the CT scan showed that the lung spots were relatively unchanged, but that a lymph node outside the lungs had doubled in size.  Though Dr Garrido pressed for more chemo, we asked that he consult with Kopetz and they decided to hold off until May.

We arrived at our hotel in Houston at 1:00 am Thursday morning (5/16).  We were tired and full of anxiety.  The CT scan later that day indicates the lung spots are showing signs of growth again, as well as the lymph node (possibly two).  Dr Kopetz explained it this way, "We have basically frozen the cancer and now it is thawing out - the machinery is starting up and beginning to produce cells."  We were not surprised to hear the recommendation to resume treatment.

Here is a little info about chemo. Think of a cancer journey as a marathon that you don’t want to finish. You need to pace yourself.  The slower the better.  You only have so many types or "lines" of chemo that you can try before you run out of options. The longer your cancer responds to the first “line”, the better.  We don’t know how many lines or different types of chemo are an option for Cliff, but we do know it is not many and that as you progress through the lines, it typically gets harder on your body. Some of the side effects are just downright nasty. 

Having two oncologists is sometimes tricky.  We have Garrido, who wants to go to "second line" chemo, and we have Kopetz, who wants to stay on "first line".  We consider Kopetz our main doctor.  He is one of the foremost in his field and we think he is a rock star. We trust him and feel like his plan for Cliff is right on the mark.  He is all for stretching our run time on the marathon.

Looking at things on the positive side... Cliff's level of disease is still fairly low.  High enough to get back on treatment, but still at the point where first line chemotherapy, will hopefully keep it in check for a long time to come.

As always, we will continue the fight.  We plan on coming in last in this race.

Cliff and Arvonne

It has been a while!

Looking at the blog, it is apparent we did not post an update after our July visit to MD Anderson.  Now here we are in early October with another visit under our belts.  So, here is an update...

Results of CT scans in both July and October showed no disease progression, meaning the tumors in both of my lungs have not grown, nor have any new ones become evident.  The cancer, in fact, is responding to the chemotherapy.  We are now counting around 6-8 visible tumors, all of which have either shrunk in size or have cavitated.  Cavitation means the tumor is coming apart on the inside - not necessarily going away, but losing viability.  When you look at a cavitated tumor on a scan, it looks like a ring - you can see the round edge but the center is empty.

Our doctor in Houston is great.  He is always 1-2 hours late, but it is obviously because he spends whatever time a patient needs.  He took the time to pull up four sets of images, from CT scans dating back to 2017 to the the most recent one, and took the time to show us the progression of each of several tumors.

So what does this mean for the longer haul?  I could stay on treatment, perhaps for a long time, but we are intent on exploring other options.  One that we discussed with our oncologist is cryoablation, where they insert a large needle, locate the tumors, then "ablate" (freeze) them.  There are other possible options that we will be researching

Our oncologist wants to go another three months on chemo to see if the cancer stays in its current state.  If that becomes the case, then he feels that cryoablation is a viable treatment.  Once performed, I would go off chemo treatment but continue quarterly scans to monitor and see if any other tumors manifest.  This isn't expected to be a cure, but patients have been known to go for years without any additional treatment.  Should spots begin to appear again, I would go back on treatment.

As always, we wish to thank everyone for the great support we have received.  We hope in some small way that our cancer journey has positively affected someone along the way.  We have certainly learned to live life a little differently, understanding how fragile it can be.

With October being breast cancer awareness month, I am grateful to still have Arvonne by my side, fighting along with me, after her fight with breast cancer.  She keeps me going!  She has been a great inspiration, a patient caregiver, and a very understanding partner in my chemo brain moments.

Remember, if you haven't been checked, get checked. I know we say this often but we are in the trenches of this disease and would hate to see anyone go through this journey.  Did you know that diagnoses of colon cancer in people 50 and older has gone down, but for people under the age of 50 it has gone up, substantially. We know of two young girls, one 17 that just lost her battle to colon cancer and another who is 11 and battling stage 4 colon cancer.  Arvonne had a colonoscopy two and a half years ago and another about a month ago.  She had two polyps that were pre-cancerous.  Enough said.  As always, GO FIGHT WIN.

Cliff

May You Find Joy

Another trip to Houston is in the books, and we are on our way back home!  My Mom (Mikell here), was gracious enough to take on a few days of babysitting duty, and let me come with my Dad to his appointment this time around.  My Dad will be visiting MD Anderson Cancer Center every 3 months for follow up CT scans, and doctors visits.  It was nice to be able to see where he will be spending some of his time, and meet his oncology team.  We were lucky enough to stumble upon an amazing, and very informative colon cancer community on Facebook called Colontown, which in turn led us to find Dr. Scott Kopetz, my Dad’s oncologist.  I was beyond impressed with the whole team, and feel that we have made a very wise decision choosing to involve him in my Dad’s care, as does my Dad, which is most important!  It takes a village, and we feel very fortunate to have all of you on our team as well!  I personally, could never thank all of you enough, on behalf of my family, for all the wonderful and kind things you have done throughout my Dad’s cancer journey. 

Today, the day after scan day, we met with Dr. Kopetz to go over the results of his CT scan.  “Scanxiety” is a word used quite frequently in the cancer community when it comes time for these appointments, and oh is it so real!  Perhaps this should really be considered a temporary medical diagnosis when a cancer patient enters the office of his or her oncologist.  My Dad’s blood pressure before he received his results was 157/74.  His nurse replied, “Well, it’s high, but not uncommon around these parts.”  Just a week ago, his blood pressure was 110/70.  Scan results this time around were GOOD!  For those of you that don’t know, my Dad started back up on chemo again in January, due to a recurrence/ growth of tumors in his lungs.  There are multiple, enough to not count/follow them all, so basically the radiologist picks a few of the largest/most measurable, and decides to follow those as a means to see how he is responding to treatment.  One has become hard to see (almost gone), and another is showing signs of cavitation (think of the tumor as a donut) and is starting to die from the center out!  It’s a great day when your cancer team can tell you that some of your tumors are basically dying!  Yes!  Overall, there are fewer “spots” on my Dad’s lungs compared to his prior CT. 

As of now, the general consensus is to continue with the current treatment plan…chemo infusions every 3 weeks, since we are seeing a positive response.  The hope (unless something better comes along) is for the current chemo (Folfox + Avastin) to work as long as possible!  More and more stories of promising immunotherapies are coming to surface, some of which were discussed today with Dr. Kopetz.  We hope that one day, my Dad as well as many others, will be fortunate enough to be a part of a successful trial, or even better, a cure!  It is truly amazing to see (literally just the surface) all the advancements and research going on in the cancer community.  You can’t help but wonder, when you walk into a place like MD Anderson, what is everyone’s story.  You see people of all walks of life.  From incredibly young, to old, and anything and everything in between.  Cancer knows no one face.  Sometimes you can sense one’s triumph, and another’s defeat.  Sometimes you would have no way of knowing, if it weren’t for all the little white bands around each patient’s wrist.  It reminds me, that cancer or not, at one point, likely multiple times in our lives, we will be fighting a battle whether it be our own, or someone that we love.  It reminds me to be kind, to be patient with others, to listen and to help each other!  Some of the things I saw at the hospital make me wish I could make everything better for that one person, someone I don’t even know.  I need to remember that simple acts of kindness can be carried out in my daily life, and are so important to not only my own well-being but to others!  Although cancer can be very depressing and defeating some days, it is you and so many others that help carry us through the peaks and valleys of this journey.  Today we are so happy to be able to celebrate a “VICTORY”!  I came across a quote today while anxiously scrolling through Instagram, waiting for my Dad to get called back…

“You find joy.  Sometimes you have to search under the rug and in the closet, but there’s something to be happy about every day.”  -Bonnie Lloyd aka Mrs. Clean, multiple myeloma patient.

Thanks for following our story, we love you all!  GO FIGHT WIN!!!

Also, Public Service Announcement.  

As we near the end of March, which is Colorectal Cancer awareness month…  We want to remind you that if you are 50 or older, are experiencing GI symptoms out of the norm, or have a family history of Colorectal disease, please consider scheduling a colonoscopy with your local GI doc.  It could save your life!  Have a wonderful and happy Easter weekend!