My 15 truths about cancer -- Cells Behaving Badly

“And ye shall know the truth, and the truth shall make you free.”

(John 8:32)

So it is one of the worst days of your life. You have been diagnosed with the big “C” or someone you love has been diagnosed with cancer. These are my 15 truths (with a lowercase “t”) about what I have learned in my journey with leukemia. I hope it gives you a new paradigm shift.

First let me clarify what I mean by TRUTH. What is the difference between the truth (with a lowercase “t”) and the Truth (with a capital “T”)? The truth with a lowercase “t” is according to man. It is relative. It is subjective. The Truth with a capital “T” is according to God. It is absolute. It is unchanging and true in all situations.

My 15 truths:

1. Cancer will dramatically change your life for the worst or for the better (and sometimes both) depending on your perspective. There is a transformative effect of suffering from an illness at a time when everyone else is pursuing happiness that seems so unfair. Only you have the control of your attitude. Do not let cancer steal whatever life you have left.

2. Each person's journey is different. Most people carry precancerous cells in their body. These cells often do not grow into cancer, because they are kept in control by a number of mechanisms that keep them playing nicely with other cells. If the precancerous cells are so damaged that they cannot cooperate, they usually repair themselves or atrophy and die.

     It just takes one bad boy. It can happen to anyone. The miracle is that it does not happen more often. The cell that decides to become anti-social develops a pattern of bad behavior. He divides whenever he pleases instead of waiting for signals from other cells. Other cells become crowded out.  The bad boys move to places they should not be, develop their own mutations, and stop listening to signals that they must die.

     Each cancer is different depending upon a patient’s individual genome (body chemistry). That is why there are different responses to the same cancer treatment for the same cancer diagnosis.

3. You will reassess your priorities. A cancer diagnosis will make you realize what is really important in this life. For me it is the relationships in my life (both spiritual and personal), creating my art, my writing, and my small contribution to making the world a better place. Think about all the stuff (material and financial) you have been collecting all these years. You can’t take it with you.

4. You will see your own mortality. A cancer diagnosis will make you stare at God at close range. Having a diagnosis of cancer makes the reality of death more clear. This is inevitable. The reality is that our physical bodies are all going to die at some point. This is not something to be feared. We will just walk into another room. I believe our spirit lives on forever.

5. Learn to live in the here and now. It is amazing how it takes being diagnosed with cancer to make us embrace the beauty of today. We can clutch the past so tightly that we leave no room for today. Or we can live in the future of what ifs -- not realizing that tomorrow does not exist yet.

6. Family and friends that connect with you do it out of love and caring. These people become your support and the joys of your life. You will find out who really cares. Do not constantly barrage them with your illness. Do not let the cancer define you. It will wear them out. Remember that they have a life that deserves to be discussed and lived.

7. Do not surround yourself with toxic or selfish people. Avoid family members and friends like the plague who make you feel worse than you did before you communicated with them. Also understand that family members and friends who disconnect with you do it out of fear of their own mortality or because you are no longer useful to them. Forgive them and move on.

8. It is important to be a proactive patient and educate yourself. Research. Find support groups. Ask questions. Take control of your life! You will come to realize that physicians often have to rely on educated guesses because they do not know all the answers. We are just at the cusp of understanding cytogenetics and DNA.

9. GET A SECOND OPINION or third or fourth. Surround yourself with experts, not just generalists. Explore your options. What is the standard therapy? Is there a clinical trial you could participate in? What other possibilities are available for you?

10. Do not let statistics freak you out! When you read about statistics please understand that it is a mathematical science based on the number crunching of data. It does not mean YOU.  In order to have the numerical results, there is often the presence of outliers that do not fit into the sample mean. You may be an outlier.

11. Your body will change during treatment. You may have cognitive impairment from the treatment. You may have fatigue, pain, or limitations in your daily life. Take care of your body. Adjust to a new normal with no guilt.

12. Prepare to have psychological and social stressors that you should not ignore. Even if you are a well-grounded person you will have your moments. Your psychological wellness affects the health of your body. Be kind to yourself. Understand that the dark cloud may quietly hover over your head, even when you are in remission, because of the fear of the return of those bad boys.

13. Financial stress may become an unfortunate part of your life, which may include fighting with insurance companies or experiencing reduced employment or no income. Take care of your energy level so that you have enough energy left over to live as well as you can with the diagnosis.

14. Laugh when the spirit moves you. Laughter improves our well-being. Don’t take yourself or life too seriously. Remind yourself of funny moments in your life. Hang around people who make you laugh. Go to the Improv or to see comedies. Try to find humor in bad situations. I understand that sometimes life just sucks. But it helps me to find demented humor in the soap opera of life. LOL.

15. Wake up every morning full of love and gratitude. Meditate, pray, and count your blessings. Surround yourself with people and activities that make your life a joyful one. Don’t overlook the simple things in life that give you happiness – like a beautiful sunrise or a grandchild’s laughter or a puppy sitting on your feet.

So there you have it – my 15 truths about cancer. This is how I personally have been able to not only survive on my journey, but also joyfully live.

Fair Access to Cancer Treatment (FACT) Act (HB2078) becomes law in Arizona

The signing of the Fair Access to Cancer Treatment Act

 Pat Elliott, Governor Jan Brewer, Dr. La Verne

Jim Brewer (LLS), Pat Elliott, Dr. La Verne, Sen. Anna Tovar

July 1, 2014 the Arizona House Bill 2078, known as the Fair Access to Cancer Treatment (FACT) Act, was signed into law at a ceremonial signing at Virginia G. Piper Cancer Center at Scottsdale Healthcare Shea Medical Center. The bill passed by unanimous vote within one year. My only disappointment is that I wanted it to be effective January 1, 2015. The law becomes effective January 1, 2016.

There were no oral cancer treatments 14 years ago, so the law needed to be updated to fit today’s innovative medical treatments. Drugs administered orally for cancer treatment should be covered by insurance the same as drugs administered intravenously. HB2078 offers fair and equal coverage for patients with orally-administered cancer treatments for patients in Arizona who are covered by health care insurance entities, such as disability insurers, health care services organizations, and hospital, medical, optometric service corporations (HMDO). For some patients the oral cancer treatment is their only option and not having access because of the high out-of-pocket costs means they will not survive.

Gratitude goes to the Fair Access to Cancer Treatment Coalition of 21 organizations consisting of nonprofits, cancer centers, professional organizations, etc.) spearheaded by the Arizona Chapter of the Leukemia & Lymphoma Society (LLS). Thank you Jim Brewer, Executive Director of LLS, and Shayna Diamond, patient access and education manager. Gratitude also goes to Rep. Heather Carter (District 15) who sponsored the bill after it was passed to her by Senator Adam Driggs (District 28). Gratitude goes to Senator Anna Tovar (District 19) for her role on the LLS Board and the State Legislature. And lots of love and gratitude to the patient advocates who joined me in giving testimony to the Legislature, as well as those who used social media to expose the inequity (i.e. Pat Elliott).

Thank you Governor Jan Brewer for signing this bill into law.  Regardless of what your political beliefs may be, this is one of the most life-changing Arizona bills that was signed by Governor Brewer for cancer patients.

Professor Matthew H. Hils, my blood brother

Professor Matthew H. Hils teaching botany at Hiram College.

Professor Matthew H. Hils, George St. Clair, and I are the three musketeers. We started the ibrutinib clinical trial at NIH at the same time. We decided we were eternally bonded as blood siblings. Dr. Matt was a botany professor. George was a retired counselor. I was a computer graphics technology professor. We kept tabs on each other.

Matt and I were diagnosed with 17p deletion, but our bodies responded to the experimental drug differently. Within months of taking ibrutinib (a.k.a. PCI-32765 and Imbruvica) Matt was in full remission. I just remember his favorite saying: "I'm about as happy as a pig in slop." We couldn't stop laughing. George and I called him our poster child.

I -- on the other hand -- have not reached remission in almost two years. When I voiced concern a year ago he said to me, “I am the hare and you are the tortoise. But don’t forget who won the race.”

CLL/SLL is not a stupid cancer like CML. I wish it were. CLL is a sneaky little devil and has a tendency to find another pathway, especially in high-risk patients. That is why researchers use the experimental oral cancer treatments to block the leukemia in different parts of the pathway.

Ibrutinib stopped working for Matt in the fall of 2013 and he was sent to The Ohio State University for another clinical trial with IPI-145, another oral kinase inhibitor. In April 2014 IPI-145 stopped working for him. Matt continuously reported his symptoms and his vitals to George and I so that we would have a record.

He was scheduled to fill the one slot in May for ABT-199, another inhibitor, which has been very successful in clinical trials so far. The drug manufacturer for ABT-199 did not give The Ohio State University a slot for May, so that option was closed for Matt.

He had to move forward to another plan – either a stem cell transplant (umbilical cord) or another clinical trial. Both required completion of a chemotherapy regiment, which would take him to July or August. A weeklong course of chemotherapy called R-EPOCH was administered beginning, Monday May 12, 2014.

Matt was to be released from the hospital at the end of the week and return for the next round on Monday, June 9^th through 13^th. Then he would either have the transplant or enter another clinical trial. He reported that this plan did not work out. He said he was having trouble with his strength and stamina and could not walk around the nurse’s station without panting. Fluid in his lungs prevented him from breathing deeply. Abdominal pain and some bleeding he said was probably because of a low platelet episode.

The next news I got was that Matt was being released to Hospice on June 3, 2014. He was supposed to email us to let us know how he was doing.

Tuesday afternoon, June 10^th I could not figure out why I could not stop the tears from flowing. That evening I received the following email from his daughter:

Friends and family: 

This evening, just before 7:00 PM, my dad passed away peacefully in his home, his "tree house," surrounded by his children, family, his "Gorgeous" Gloria, and friends. We were talking happily around him, discussing his storming the Castle of all castles, and storming the gates of Heaven. (I trust we all know Dad's love and fondness of Billy Crystal's line in The Princess Bride: "Bye bye! Have fun stormin' the castle!") Just seconds after this, we realized his pain and discomfort had come to an end and that he was at peace.

Shawn and I cannot thank you enough for all of the love and positivity you provided our dad with during these last three years, and all the additional years of laughs and love you gave him as his friends and family. I don't think I'm alone in saying that my dad handled his cancer and treatments with a kind of quiet grace and bravery that was truly something to behold. Just yesterday, he was smiling at us, sneaking kisses on cheeks, and laughing at our very bad jokes. Not to be competitive, but I think he has set a high, golden standard for what an incredible person and father can become. 

He was a father to Shawn and I, and also to our friends and his students. He was a brother to Kathy, Linda, Sandy, Mary, Beth, and Dave, and also to all of his friends and colleagues. Dad was happily, blissfully in love with his partner Gloria. While we so wish that he had had many more years with all of us, Shawn and I know that my dad was happier in these last three years than we have ever seen him before. That is due in large part to all of the beautiful people and relationships in his life. He always saw teaching as his passion; being a father as his greatest pride and joy; and being a selfless, loving friend and brother as his honor.

We are all better for knowing my dad, Prof. Matthew H. Hils (November 27,1955-June 10,2014).

My heart is heavy, but I know Matt is all right. His spirit is alive and well. :-) I am dancing the Florin dance with tears in my eyes celebrating my blood brother Matt's life.

Florin dance https://www.youtube.com/watch?v=PNgI026JDGU