The Importance of Social Support for Invisible Cancer Patients

Well, I peaked your interest with the term “invisible cancer patients;” didn’t I? Well-meaning friends and family often say to me, “You don’t look sick. In fact, you look really good!” SURPRISE! I really do have cancer. People are judged by what others see in them. If you look good, people have such high expectations, as opposed to someone who is using assistive devices or who is visibly sick. Today there are many targeted cancer therapies (like Imbruvica, a.k.a. ibrutinib, a.k.a. PCI-32765) that don’t cause many of the visible signs of cancer treatment, but it is cancer treatment non-the less.

Many of us with cancer are living with an invisible disease. It could be your neighbor, an old friend from college, or the woman you ran into at the grocery store. They look like healthy normal people, but they are fighting an ongoing illness and living with fatigue, pain, cognitive impairments, dizziness, and other limitations, such as having limited ability to cope with stress.

The invisible cancer patient is left with the residuals of having cancer – both physical and psychological. Cancer support groups and one-on-one counseling can help a cancer patient get through the psychological stress of coping. In today’s blog I am addressing the importance of social support from family and friends for the invisible cancer patient like me.

Usually when someone thinks of a cancer patient, they are remembering the visible effects of chemotherapy with the hair and weight loss. A person standing next to you in the checkout line may have a brain tumor, but it is not until he is treated with chemotherapy that you notice he looks ill.

Cancer changes your life. Along with the physical changes, having a cancer diagnosis changes your relationships, your activities, your career, your role in life, and comes with psychological stress. I have always been the “EverReady Bunny” full of energy. It is difficult for me to admit that I am not the same person. It is frustrating that I cannot do all the things I used to be able to do… that I need help. I used to be the master multi-tasker. Now I have to be realistic and remember that I can schedule one or two things per day before I get really fatigued. The problem is that I don’t look sick to others, so they often forget. And I often forget.

Many of us with invisible cancer are often walking around with a dark cloud over our heads asking ourselves “When will the other shoe fall?” Others find comfort in intermittent ostrich moments of wanting to forget we have cancer at all. On good days we are joyful and then we remember… “Man, I have cancer! This IS a big deal!” Other days we just want to crawl back in bed and dream about our life B.C. (before cancer), because having cancer sucks. We get sick of it and want our old lives back again. I have always been one of those “healthy as a horse” kind of people… B.C. Some days it feels like someone stole something very important from me. Some days tears may fall.

Herein lies the frustration. Because I have always been such an independent woman my entire life, it is difficult for me to admit that life has changed. I do not want to be treated differently, but some days I have no choice. I have a new normal.

Some times it is delightful when a friend forgets I have cancer, because then I know she is treating me like a normal person. Yes, I have cancer, but it does not own me. It does not define me. So those moments are precious to me.

Scientific research has found that there is a direct correlation between a cancer patient’s wellbeing and the social support the person receives (Usta, 2012). If you are family or friends of a cancer patient, know that reaching out leads to positive emotional adjustment to cancer. It lessens the high psychological stress of having the disease.

The National Cancer Institute (NCI) states that cancer patients who are able to cope with stress have a better quality of life. Having a positive attitude does not make a cancer patient live longer, according to NCI. It makes the journey more palatable for everyone. However, I can tell you that the psychological stress (i.e. fighting the insurance company’s drug coverage and benefits, wondering if there is a treatment that will work, leaving a lucrative career before you can collect retirement benefits) takes it’s toll, even on the person who has successfully managed a demanding career. The National Cancer Institute also states that psychological stress alone has not been found to cause cancer, but continued exposure to long-term stress has a direct correlation on health and ability to cope with cancer.

So what can you do to offer social support to your friend or sister or mother who has cancer?

• Let her live as normal a life as possible. Please do not feel sorry for her or be overprotective. It really isn’t helpful.

• If she acts differently at times – maybe a little needy or sensitive, please be patient with her. It soon will pass.

• Understand that especially during medical testing she may be anxious or fearful. This is usually short-lived, so please overlook her stressful attitude and be prepared to be forgiving and understanding. Try not to react emotionally by arguing with her. It makes matters worse.

• Family and friends, you do not have to feel pressured into keeping a positive attitude at all times, because it is just plain unrealistic. When people have major life changes, it is normal to feel some sadness, fear, anxiety, depression or guilt in order to learn to cope with the diagnosis. It’s okay.

• Please do not blame yourself or blame her. Try not to feel guilty, but if you do and feel the need to explain your regrets to her, go ahead. Then just move on with her.

• Please do not always talk about the past, unless it is something that will make all of you chuckle. She needs to live in the here and now. She also needs hope that she has a future.

• Most importantly, listen to your heart. When she talks about cancer, do not change the subject. Please listen to her. Do not be silent and worry that you may say the wrong thing. Knowing that she is not alone and that you care is what is really important to her. When she doesn’t want to talk about it, offer to talk about it at another time.

I am blessed and filled with love and gratitude, but that does not always stop the blue funk from coming my direction. Remember that showing you care is good medicine. Remember, I need you more than ever. Do not wait for me to reach out to you. Sometimes the simplest thing just makes my day.

Fair Access to Cancer Treatment bill (or FACT Act) gets a vote in Arizona

Wednesday, Feb. 12, 2014

Reference title: Cancer treatment medications; equivalent cost-sharing

This afternoon at 2 p.m. the Arizona State Senate, 51^st Legislature, Committee on Finance met for the second regular session in Room 3 to discuss the SB 1247, the Fair Access to Cancer Treatment bill (or FACT Act). The hearing was live-streamed and introduced by Senators Driggs, Tovar; Representatives Brophy McGee, Campbell, Carter, Gonzales, Gowan, Meyer, Townsend; Senator Barto; Representatives Boyer, Steele.

The current Arizona state law, enacted in 2010, allows insurance plans to charge cancer patients treated with oral cancer drugs much higher co-pay rates than those treated with other forms of chemotherapy. This has resulted in higher mortality rates than in other countries that have health systems with easier access to oral cancer treatments, according to Pat Elliott, e-patient advocate. “Cancer treatment medications” means prescription drugs and biologics that are used "to kill, slow or prevent the growth of cancerous cells.”

The vote was seven for and zero against. There were testimonies from two committee members on the difficulty for patients getting through cancer treatment. One spokesperson said that being against this bill is similar to saying that dentists should use hand drills on teeth, because electric drills have the extra utility expense.

Bill’s text: http://www.azleg.gov/legtext/51leg/2r/bills/sb1247p.pdf

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.

The Miracle of How a Book Wrote Itself

 I just wrote a book titled Idea Engineering: Creative Thinking and Innovation. Yes, you are probably just as surprised as I am. The real surprise is not that I wrote a book, but how the book got written.

Because of the research I had done as a professor, I was approached by a publishing company in New York to write a book about creative thinking and innovation for engineers and technologists. They wanted me to organize some of my prior research on the topic and said the book could practically write itself. LOL. That would be a fairly easy feat B.C. (before cancer).

I paused. One of the things that happens when faced with the Grim Reaper poking at you is that you think about your bucket list and your legacy and what you will leave behind. Will anyone remember you? Will your life have counted for something good in this world? I decided to take the chance.

I said that I was not interested unless I could put my own spin on it. I wanted to add personal anecdotes so that the book could be read by people outside of the academic realm. I wanted to add some of “life according to Dr. La Verne” moments.

Privately I explained to the editor that I had been diagnosed with cancer and had entered a clinical trial. I was dealing with some side effects, but I believed that the process would be a wonderful diversion from thinking about leukemia. He was willing to take a chance.

I gathered my research and then started organizing it and rewriting it. I thank God every day that I could write this book at my pace and my way. Some days I could not do anything. I was fatigued. Some days were good and then I would have to pay for it later. Some days I could only sit for short amounts of time on the computer, because of my spinal stenosis. So some days I worked on the computer, then got up and walked around the room. Then I was horizontal in bed and read a little, then sat back down at the computer, then took a nap. The entire process was exhausting.

The interesting parts of the journey were the times I began to get the symptoms of chemo brain (Refer to my past posting). I couldn’t remember what I had done or not done on the manuscript. I know this must sound horrific to most people, but because my demented sense of humor saves me, I found it quite amusing. I would reread parts of the manuscript and say to myself, “ Wow! This is great! Did I actually write this?” Then there were days I would read what I had written and say, “This is crap! What on earth was I thinking? This doesn’t even make any sense at all!” Then I would trash it.

On a few occasions I couldn’t remember where I put my handwritten notes. “Well, you old senile bat,” I would say to myself, “Time to do something else.” Then I would meditate for a while, do something else on my list, and try again another day.

The process continued throughout all the feedback from my reviewers and the copy editors. I wish I had a fast-speed version of me. It would have made great entertainment on YouTube.com.

So now the book is being printed. It is available from Amazon.com, as well as the publisher’s website momentumpress.net. It truly is a miracle that the book got finished. Somehow it must have written itself.