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