RELATIONSHIP EXPECTATIONS = What you expect from others in your personal life when you are diagnosed with cancer

“If you can’t change the circumstances, change your perspective.” ~Unknown

When you are diagnosed with cancer and you are dealing with the fears, the struggles, the disappointments, and the confusion, you feel pretty vulnerable. A good friend or family member is often the best medicine. But what happens when those friends and family members do not give you what you expect? Relationships change when a crisis happens. Some people gravitate closer. Some disappear from your life.

I believe it is especially difficult when a cancer patient is dealing with years of struggling with cancer. You are not the only one who gets tired of it.

According to psychologists, you teach others how to treat you. That makes sense, but I am still personally working on this. It’s important for me to treat others with the kindness, attention, love, and respect I would want for myself, but I am still a work in progress. I know that healthy expectations include being respected and being treated well. When these expectations are broken, we naturally feel angry, sad, used, and hurt.

What I have learned in my life is that if you expect others to act a certain way, assume anything, or force change on the behavior of other adults who are stuck in their own quagmire, plan on being disappointed. You cannot expect out of others what they are unable to give. You cannot expect others to treat you in the same manner you would treat them, because they own their own emotions, behaviors, and worldview. Just because you would not behave a certain way, does not mean they will not. They alone are responsible for what they do.

I have had people in my life who have unfortunately revealed their true colors to me in this journey of cancer. Rejection is probably one of the most difficult things to come to terms with. When we think we have a relationship with someone, and we care about the person, it is easy to assume the person cares too, and would respond as we would.

When the person turns his back and walks away, that is in the least … very disappointing. This situation has a direct affect on the state of your body and your emotional wellbeing. It hurts. Your attitude shift needs to happen immediately for your own sanity. What you are left with is the control of your own attitude.

This is what you have to do:

• Change your perception of hope … to being open to the reality of the situation.

• “Let it go,” as Ana and Elsa sing in the movie Frozen.

• Live in the present, not in the past or a fantasy world of what could be.

• Look at them not with resentment, but with compassion. They cannot give you what they are incapable of giving.

• Reach out to cancer support groups. It is amazing how strangers can become friends.

• Be grateful for those friends or family members that are able to give you parts of what you need. Some people are good at spending time with you and going to the doctor with you, others cannot handle that and would prefer to take you out for a fun time. Be thankful for that.

• Look around you at the people who make you feel loved, and worthy. Focus your attention on those angels in your life.

• Forget about being validated or approved. It will only make you feel empty when people do not act the way you hoped. Remember, you cannot change others. It is up to them to change.

• Give yourself what you need.

• Walk away from the toxic situation, if it is best for your health. As my friend Addie says, “Not my circus. Not my monkeys.” It’s a Polish idiom.

Live your life in gratitude and love. Wake up each morning and count your blessings.

-- Dr. La Verne

Fear Busting

Being diagnosed with cancer has a way of making us vulnerable to our own mortality. It brings about the fear factor. Many of our fears in this journey are valid and many are unfounded and cause a lot of misery in life. Today I thought I would tell you what I have learned about being faced with a fearful situation.

If we are faced with a potentially dangerous situation – emotionally or physically – fear kicks in. This response is the way we as humans protect ourselves from life-or-death situations -- real threats. The key words are “real threats.” But many times FEAR is “False Evidence Appearing Real” (Garcy, P.D., 2013).

Regardless whether fear is real or imagined, it still has the same effect on your body and your mind. To some, fear is emotionally and physically paralyzing, and the ability to rationally process information is lost. To others, personal demons and patterns of habitual thinking trigger responses that result in unnecessary anxiety and a series of “What ifs?” Others who hide their fear often go on the attack.

I personally avoid making potentially life-changing decisions if I am in this state of mind. I focus on calming myself. I breathe through my nostrils and into my belly and out through my mouth. I meditate and pray. I focus on the here and now, not on any future event that may or may not occur. I tell myself, “STOP!” and I focus to prevent my imagination from going wild. I calm myself.

Then I ask myself, “Do I have any control as to the outcome of the situation?” If no, then I have to let it go.

Then I ask myself:  “What are the facts?” “What is the worst-case scenario?” “What is my plan?”  “Who can help me?” There is always a plan to be made and always resources to be found. The best time to make this plan is when you are calm on the inside and thinking rationally. Even not doing anything is a decision. I make at least two options: Plan A and Plan B. In my life, there is often a Plan C. When I am faced with a stressful situation, I have plans in place. If Plan A does not work, I go on to Plan B. The best option is to be proactive and have these plans in place before a crisis occurs. Yes, I know… in a perfect world.

It helps me to find even the smallest increment of the situation that I can face without anxiety. I say to myself, “I can do that!”

After I take care of that small piece of fear, I ask myself, “What other small step can I do to work my way through this dilemma? I find that for me it is achievable to work my way through a situation in small pieces. That way it does not become emotionally overwhelming.

Many times when people are anxious they avoid doing tasks that appear to be challenging, because of fear of failure. Again, take baby steps. Stand tall and confident. Make your body control your mind. The thoughts that enter your mind have a direct effect on turning around the fear factor.

I wake up every morning and count my blessings. I am so grateful that I have the honor of this day. I am not going to waste it being afraid of everything that comes my way.

Another breakthrough therapy for CLL patients

Good news for the 17p deleted CLL/SLL folks. Today it was announced that venetoclax (ABT-199) is designated as a breakthrough cancer treatment for 17p deleted CLL/SLL patients who have been previously treated and relapsed or who have become refractory. This drug is another kinase inhibitor that is an oral cancer treatment.

I was diagnosed August 2009 with 17p deletion and p53 mutational status. Patients initially diagnosed with 17p deletion are given a poor prognosis. In 2010 the median life expectancy for CLL patients with 17p deletion is less than 2-3 years (Stilgenbaur & Zenz, 2010). Medical science and technology research has given us options and extended our lives. I have been taking IMBRUVICA (aka ibrutinib, PCI-32765) since July 2012, and now I have another option if I become resistant to it.

http://abbvie.mediaroom.com/2015-05-06-Investigational-Medicine-Venetoclax-Receives-Breakthrough-Therapy-Designation-in-Relapsed-or-Refractory-Chronic-Lymphocytic-Leukemia-in-Previously-Treated-Patients-with-the-17p-Deletion-Genetic-Mutation

Tiffany, my angel

I try to live every day of my life journey in gratitude and love. I am especially grateful for special people in my life who are wise beyond their years and have sometimes unexpectedly taught me valuable life lessons. I am grateful for those who have made my life worth living, and those who make my life easier and more joyful. I like to think of these special people as the angels in my life.

One of my angels is Tiffany. She is the cousin of my daughter-in-law Elizabeth. This wise and witty young woman had a liver transplant when she was 18 and then less than a decade later her liver started failing her. She underwent numerous bouts of unsuccessful chemotherapy and medical treatments for several years.

At our family Thanksgiving holiday in Corpus Christy, Texas, she announced that she “had enough of being picked at and prodded and infused with chemicals.” She said she had done all that she could do and had resigned herself to THE reality. In her witty manner Tiffany explained that she had directed her doctor to give her plenty of morphine when the time was right to take her to “Marguarita-Land.” She also announced that she was in the middle of planning a “bad-ass” celebration party of life and all things good that was taking place at the beginning of January. We were all going to eat and dance ourselves silly. We all started chanting, “Party! Party! Party!” Tiffany burst out laughing! To most families this might sound inappropriate, but we loved her dearly and we knew that each of us surrounding her at the table would also not be leaving this earth alive. We also knew that being inappropriate was sometimes appropriate.

I had just been diagnosed with leukemia three months before and was given a poor prognosis…

About 3 a.m., hours after everyone had gone to sleep, Tiffany and I tiptoed into the kitchen to sneak a piece of pie and surprised each other. We talked well into the morning. I was 57 when I was diagnosed. I had lived a great life. I was married to a man who was not only my husband since I was 19, but also my best friend and someone I was still crazy about. I had children, grandchildren, and several careers. I was working my way through the reality of accepting was is and accepting what is not.

Tiffany was only 28. My heart ached for her.

She said that she had lost some friends along her journey with cancer and some friends unexpectedly surfaced. She said that she now understands that when her friends stress about petty nonsense, it wasn’t petty nonsense to them. It was their life and it was okay. Tiffany came to a place where she realized the rest of the world did not revolve around her illness. She was not afraid, but she was thankful for modern medicine and morphine to eliminate the suffering. She helped me immensely that night – my wise and courageous little angel.

Tiffany passed before Christmas that year. She was surrounded by most of her family. Everyone was crying at her bedside, when she suddenly woke up. Apparently, she had not been given enough morphine. She saw everyone crying and proclaimed, “Why are you crying? I ain’t dead yet!” The room filled with laughter. And then quietly she passed smiling. Having the last word was always her thing.

We had the party in January, as she instructed, and ate, danced, hugged each other and laughed. We celebrated Tiffany. It was good.

She has been with me my entire journey. I carry her in my heart. Thank you MaMa BeBe for your daughter. She gives me great comfort.

Patient Advocacy

Well, it has been a busy patient advocacy time for me lately. I was on a panel with two researchers/physicians for the private screening of the PBS documentary "The Emperor of All Maladies" sponsored by the Leukemia & Lymphoma Society.

Adrienne Briggs, MD, Arizona Oncology; Raoul Tibes, MD, PhD, Mayo Clinic; 

La Verne Abe Harris, PhD, patient advocate

I also participated in a panel discussion on living well at the Tempe (AZ) Town Hall Meeting for CLL/SLL patients and caregivers. Here is my interview (10 minutes) with Andrew Schorr of Patients Power.
http://www.patientpower.info/video/dr-la-verne-abe-harris-i-live-in-the-here-and-now/?autoplay=1&utm_source=health-topic-alert&utm_medium=email&utm_campaign=CLL-2015-0014-02&utm_content=efc19eaf01

I recently returned from a trip to the National Institutes of Health. Good news! I am still in clinical complete remission. My white blood count is now a little over 7,000, which is in the normal range. I am enjoying this beautiful moment.

Living Life

I have been busy living life. That’s a good thing. I don’t know how much time I have in remission, so I am taking advantage of every minute and living my life in gratitude.

“Man.
Because he sacrifices his health in order to make money.
Then he sacrifices money to recuperate his health.
And then he is so anxious about the future that he does not enjoy the present;
the result being that he does not live in the present or the future;
he lives as if he is never going to die, and then dies having never really lived.”

-- Daliai Lama

Here is my gift to you. It is an on-going list of 50 things to live your life to the fullest:

1)    Be mindful.

2)    Be kind.

3)    Do something each day that inspires you or makes you smile.

4)    Do what you love.

5)    Check out the sunset at least once a week.

6)    Check out the sunrise at least once a week.

7)    Look around you and make a note of the beauty in this world.

8)    Surround yourself with people who love you just as you are.

9)    Spend some quiet time with yourself in meditation or prayer.

10) Contact someone you have not been in touch with for a long time.

11) Try something you have not tried before.

12) Listen to music.

13) Go for a walk.

14) Laugh.

15) Dance.

16) Grow a garden.

17)Stop taking yourself so seriously.

18) Stop taking life so seriously.

19) Forgive others.

20) Be compassionate.

21) Organize your closet and your living space.

22) Eat slower.

23) Have a glass of red wine.

24) Simplify your life.

25) Keep your promises.

26) Sleep well.

27) Slow down and stop driving like you are in a race.

28) Learn to say “No.”

29) Eat one meal a day with someone.

30) Continue to learn and be curious.

31) Be a child.

32) Stop wasting time on non-essential tasks.

33) Mistakes get made. Learn from them and move on.

34) Challenge yourself.

35) Go outside and enjoy nature.

36) Listen to others.

37) Stop complaining. Do something about it or ignore it.

38) Celebrate the success of others.

39) Don’t be afraid to fail.

40) Don’t gossip.

41) Take care of your body.

42) Take care of your mind.

43) Improve your posture.

44) Cherish your parents.

45) Stop trying to please everyone.

46) Work on improving yourself.

47) Accept constructive criticism.

48) Stop blaming others.

49) Make someone’s life easier.

50) Live in gratitude.