Open Letter

An open letter to my fellow cancer warriors…

Because my story is online, in this blog, people tend to find me and contact me from time to time. Usually they contact me because they are searching on colon cancer because of a recent diagnosis.

I decided to collect the bits from various Facebook messages I have sent to different people and to organize them into this letter.

This letter is to you, if you are battling cancer!

I am so sorry that you have this diagnosis. It is a serious disease and the battle can be hard. Moreover, you can win this battle, Deo volente! No matter what the prognosis, winning is something you can do. And winning may not mean surviving. You can still win, no matter what happens.

So what do I mean by “winning?”

I personally know cancer (even stage IV) can be beat, with God’s grace, and I know many others diagnosed with Stage IV colon cancer that are experiencing long-term remission as well. So, yes, surviving is sometimes part of winning. However, winning is more than just surviving in this world.

One thing I learned as I went through this battle is that we cannot control everything that happens to us. We will face turmoil in this life and many of these situations will be completely out of our control; however, one thing we are ALWAYS in control of is our response to the situation. We are always in control of this, although many do not seem to realize this. You always have a choice. You can choose to do nothing and drift about, letting the waves take you to wherever. Or you can choose to be positive about the outcome, to fight hard, and to pray a lot. So winning also includes this realization, that we always have a choice, that should be consciously and carefully exercised.

Facing this disease seemed to force me to think about my mortality. The reality is that we will all die someday. We know this but do not really seem to reflect on this reality much. I think it is easier for us to ignore this reality. Instead, we like to live our lives as if we will live forever. Thinking about our death can be difficult to do.

So, how do we do this? How do we think about dying in a productive way?

This is also something I grappled with throughout my battle.  I read the books and yes, I went through anger, denial, acceptance, etc… And acceptance for me was easier to do because of my faith in God. I have a strong belief that our good Lord is always in control. I believe that He can heal us in the blink of an eye. However, I also know that He has a plan, and whether we are healed or not, His plan is always the best plan!

I mentioned that I did pray a lot during my battle. However, I did not simply pray “God please heal me.” I may have started that way, but somewhere along the way I realized that God’s plan is not really about me. And I realized that whatever the outcome of my battle, it was most important that God’s plan prevail.

If sparing me from an early death was His will; so be it. If it was time for me to be called home, so be it. Whatever His plan, it was much more important for me to pray that God give me the wisdom to understand His will, that He give me the courage to chose to do His will, and that He give me the strength to carry out His will.

No matter how much time I may have left in this world, the most important thing I can do is to be God’s servant.

That doesn’t mean I did not pray for God to give me more time. I did. I prayed that He give me time to continue serving him as a husband, father, grandfather, brother, son, worker, friend. That He allow me whatever time to be a faithful servant for Him.

I came to accept that whatever the Lord’s will; that it would be the best plan for me and my family. You might say I came to COMPLETELY SURRENDER to Jesus. Surrender my entire life, being, all “my” resources , my relationships with others, everything (although these things are not truly mine, they are Blessings from our Lord)!

Surrendering to Jesus left me with great peace. I can sleep at night no matter what I faced during the day. Pacing myself through the highs and lows is much easier to do with Jesus as my strength. This is a big part of winning this battle!

Another bit of advice I like to give those who are going through this battle is that they need to be comfortable with their doctor. I am a trained analyst; which means I need to learn new things all the time. I’m pretty good at learning. However, I realized that no matter how much learning I could do, I could NEVER learn more than what my doctor knew. In addition to surrendering to God, I also had to surrender my outcome to my doctor. I had to trust him and his medical team and trust that God was going to work through their care to reveal His will.

Another goldmine of support that I found along this journey is an online community of people going through the same (or similar) battles. I found that I could ask this community anything. And they always responded with wisdom, experience, and care. I also found that they truly understood what I was going through. They provided a lot of encouragement and support in managing through side effects of cancer treatment.

This community was the Cancer Survivor Network, Colorectal Forum. You can access this forum (and I strongly suggest you do this) via https://csn.cancer.org/csnhome.

Someone on this network once told me that a cancer battle was like a marathon. You need to settle into this mindset, that this was going to be a long battle. Similar to how pace is an important part of running a marathon, pace is also very important strategy for a cancer battle. You need to pace yourself. Try not to get too low or too high. Pace your way through the battle and through the highs and lows. And never stop going forward. Keep on fighting!  One of the quotes that stuck with me is “We fight because that is what we do!”

Reading the bible was very therapeutic for me. I was always a religious person; however, I never really read the Bible in depth until I faced this battle. I found the online YouVersion Bible and this quickly became an important part of every morning and every evening and sometimes in the middle of the day as well. The reading plans shared on this bible were truly inspiring. I strongly recommend reading the “Tim Timmons” reading plans for cancer patients (search for his name in the reading plans section of YouVersion Bible). He is a cancer survivor and has a lot of insight into battling cancer as well. And He is an inspiring writer and singer. Here is a link (click here) to one of his reading plans.

To me, finding the wisdom in the bible and following this to Jesus is really how we win a cancer battle!

I will share some additional things. I will condition this by saying that I believed my doctor when he told me “every cancer case is unique, as unique as we all are as people.” While we may experience similar things, some medications will work differently on person A than person B. Therefore, what worked in my case may not work in yours. And what didn’t work in my case may actually be very effective in yours.

In my case, I believed in surgery. I embraced surgeries as a way of removing the cancer. I also embraced chemotherapy as well; but believed the truly curative chance would come through surgery.

I ended up going through six surgeries for the colorectal cancer (2 colon resections, 3 liver resections, and 1 lung resection). I also had a right orchiectomy just before being treatment for colon cancer. Yes, I was first diagnosed with testicular cancer, had a orchiectomy the day after being told I had this, and ended up being diagnosed with colon cancer a month after completing the radiation for the testicular cancer. It was a crazy time!

I went through 53 treatments of chemotherapy. A few lessons from this part of my battle are as follows:

1. Oxaliplatin was a tough treatment for me. In the end this drug did not seem to help in my case (remember, it surely does help a lot for others). The cancer grew throughout these treatments and I now have permanent neuropathy in my feet from this drug.
2. Erbitux (cetuximab) was the drug that seemed to have the greatest impact on my cancer. Because of my KRAS test I was determined to be a candidate for the Erbitux treatment. This drug seemed to hammer the tumors in my case. And my oncologist followed up my last surgery with a year of Erbitux treatment. The one downside of this drug was a bad acne like rash side effect. I blogged many times on dealing with this side effect. And, in my case, NOTHING seemed to help alleviate the rash. One grace was that the longer I received treatment the less the rash occurred.

A note about scans (CT Scans, MRIs, and PET Scans) and CEA testing…

I had all these scans along the way. What I came to believe is that none of these scan technologies are perfect. They each produce an image that helps the doctor detect if and where tumors may be formed (or forming) in our bodies. Unfortunately, they may all fail to detect tumors. In my case, a PET scan detected some cancer recurrence in my colon, near the incision from the first colon resection. Had I not had the PET scan this tumor would have surely grown without detection? MRIs were the only scan that found tumors in my liver. Neither the PET scan nor the CT scan detected the tumors in my liver. The CT Scan seemed to only detect the nodule in my lung.

In some cases, as in mine, CEA proves to be a good marker for cancer growth. CEA was something we came to rely on as a key indicator for whether the chemo was working or not. I personally believe that the CEA was only a good marker on cancer in the liver. When CEA sored up, we found tumors in my liver (via an MRI scan). Very important note: I also experienced cases where CEA test came back high but later CEA test showed normal. The importance of this is to KNOW that you just might have a false positive in this testing. Even though I knew this, these false positives still caused a lot of stress in our lives.

Vitamin D:  My oncologist prescribed vitamin D for me and told me the data is coming in and showing a strong correlation between vitamin D deficiency and colon cancer (and other cancers)! Take vitamin D. I tell my whole family to do so.

My prayer for you is that you win this battle! That you find Jesus and accept him as your savior. And that Love abound in your life, that it keep you anchored and safe, and that it provides you healing and strength.

God Bless!

Phil