The Will of God

The thoughts in this posting are my personal beliefs about the will of God. Read them with an open mind or don’t read them at all. It is your choice. I do not wish to get into a religious or philosophical debate. I respect that other people may have different beliefs and that is fine. I only wish to express my feelings. I am writing about this topic because it has helped me in my journey as a cancer patient and I am hoping this will help others.

When I meet a new group of people, I like to wait as long as possible before the topic of leukemia comes up in the discussion. I like people to know who I am first, before they label me as “the cancer lady.” Yes, I have cancer, but cancer does not define me.

God did not give me cancer. I was not a bad person and given cancer as a punishment. It just happened. It is a consequence of one crazy cell in my body that went array with DNA damage and did not repair itself or die like a normal cell. Instead this cancer cell continued to grow out of control and form new and abnormal cells. With the trillions of cells in the human body, it is more of a surprise that this does not happen more often. According to the American Cancer Society, half of all men and one-third of all women in the United States will be diagnosed with cancer in their lifetime.

When someone in your family develops cancer or dies, I often hear the words “That is the will of God.” I am sorry my friend, but that is NOT the will of God. I know it may comfort some to hear that it is the will of God, but I personally get no comfort from a lie. I want the truth. The intentional will of God is for perfect health and goodness.

The battle against cancer is the will of God. I give so much gratitude and love to those wonderful researchers and physicians who have made it their life purpose to find a cure for cancer.

Getting back to the topic of when bad things happen:

What happens is that either the free will of man (or woman) or the natural laws of the universe lead to consequences. Let’s say that a person with a gun makes the decision to shoot another person. That is free will. The bullet penetrates a part of the body that is required to sustain human life and the person dies. That is natural law. God did not will this act.

Here’s another example: A soldier is exposed to Agent Orange fighting for his country. Later he develops cancer. God did not will this. This is natural law.

There is a mystery about why things happen. The longer I live, the more questions I have unanswered. I have come to understand that is because I am not all-knowing. As a human being I do not have all the answers. I just have to have faith and trust that some day in my afterlife I will come to understand.

What I do know is that it is important to take the circumstances in which you have found yourself (either by your own free will or the laws of nature) and make something good out of it. God can use a healthy person more effectively than a person with cancer; however, if you have the right attitude toward your circumstances, you can do as much good or more than a healthy person. That is where the spirit comes in.

“In the end, only three things matter:

how much you loved,

how gently you lived,

and how gracefully you let go of things not meant for you.”

- - Buddha

Fair Access to Cancer Treatment (FACT) Act

Today I am going to discuss oral cancer treatment insurance coverage and what we do and do not know about Ibruvica (formerly ibrutinib, formerly PCI-32765).

The Fair Access to Cancer Treatment (FACT) Act addresses outdated insurance company benefits that have not kept up with the times. Cancer treatment is cancer treatment – whether it is given intravenously or orally. Physicians and patients should be given the choice of cancer therapy based upon their best chance of survival. Today patients are forced to choose a less appropriate treatment option because of insurance coverage.

The Leukemia and Lymphoma Society is working to communicate this message to state legislators. I am asking those who understand the benefits of drugs like Ibruvica and Gleevac (which was FDA-approved years ago for CML patients) to call their representatives and senators to educate them on the FACT initiative.

As you recall, I began the clinical trial with Ibruvica 18 months ago at the National Institutes of Health. I was untreated, 17p deleted, chemo-resistant, symptomatic, and having less than 1% chance of finding a bone marrow donor. The risks of taking the drug outweighed any other cancer treatment for me personally. What are the long-term risks? How long before the drug stops working? What then? These are questions in which we have some answers based on educated guesses and scientific knowledge, and no definitive answers for others.

This is what we do know:

1.    1.  Ibruvica is a kinase inhibition drug that permanently and irreversibly blocks Bruton’s Tyosine Kinase (BTK) and Interleukin 2 Inducible T-cell Kinase (ITK) for specific cells daily. Translation: BTK is hijacked and T-cells are altered. Kinases are used in the normal cell functioning. The cancer cell that won’t die gets the message to die, regardless of prognostic markers (17p, 13p, trisomy 12, 11q).

2.     2. The drug begins to shrink lymph nodes within 24 hours.

3.     3.  Frontline patients on Ibruvica fare better than frontline patients on chemotherapy, because healthy B-cells are not destroyed in the treatment.

4.     4. The drug must be taken on a daily basis in order to work.

5.     5.  Ibruvica will probably cost over $100,000 per year.

6.     6. Insurance companies provide less coverage (if any at all) for cancer treatment drugs administered by mouth than they do for cancer treatment administered intravenously.

7.     7. Ibruvica is not a cure, but after four and a half years of clinical trials, many frontline patients have received partial remission. A few have received complete remissions, but there is not 100 percent progression free survival (PFS).

8.     8. The good news: There are several new oral drugs in the clinical trial pipeline that will offer options for patients who relapse.

What we don’t know:

1.     1. We do not know how this drug affects one’s ability to make novel antibodies to new health threats or what it does to one’s adaptive immune system on a long-term basis.

2.     2. We do not know how long the drug will continue to work before the cancer finds a new path.

3.     3. We don’t know what the health insurance companies will do with the payment of this drug.

In summary, taking a cancer treatment by mouth or intravenously are both viable options. So let’s offer access to cancer patients.