My Journey of Hope

2-5Years

Margot Larson on April 23, 2011

I was Diagnosed with:

Stage IV NSC Lung Cancer

Employment Status:

Consultant -recently retired

Gender/Age:

Female/64

Type and Description of Treatments:

In the last couple of years, I have faced the return of my cancer, in the fluid of my lungs which was treated with Alimta. The next time it returned, they installed a pleural drain and we drained the fluid anywhere between 4 to 7 times a week at home for 4 months. Now I am on a Pfizer clinical trial using Crizotinib. Because I have an ALK mutation and my tissue was a match, this drug appears to suppress the formation of new cancer cells. This trial is to monitor dosage and side effects. While undergoing the screening for the clinical trial in March 2010, we discovered metastasis to the brain. I was initially treated with Gamma Knife in 2010 and then underwent brain surgery as well as Gamma Knife again in March 2011 when I began to experience cognitive symptoms. In early summer 2010, I contracted a myco bacteria in my bad lung which initially required hospitalization in order to treat with antibiotic infusions. My dosage was lowered to 4500 mgs per day of antibiotics which required a daily morning infusion at the local hospital followed by a second dosage at home for a period of 7 months. In between all of this, the prednizone I took resulted in Avascular Necrosis which cause my left hip to collapse requiring a total hip replacement in June 2009.

How do you feel today?

I feel great. I'm not as strong as I used to be nor do I have the stamina. Most people who meet me have no clue that I have advanced cancer.

Since the diagnosis, what has changed in your life?

I have learned to manage my energy and as a result I do enjoy and cherish the quality of life I have.
I try to pamper myself, and live in the moment. I may not be as frugal as I used to be because enjoyment of life during the good times is a priority.

I manage my nutrition and my stress and I maintain a positive attitude.
I do not expect cancer to go away. I accept that I am living with cancer - not dying of cancer.

What is going well for you right now?

I feel good; I look good; I enjoy life and don't allow all these appointments, tests and challenges to get to me. Although, I will say that I had a GREAT deal of apprehension before brain surgery in March 2010.

What is not going well for you right now?

The downside of the clinical trial is that I have a cycle which requires me to be evaluated every 3 weeks in order to continue the meds. Then every 6 weeks, I have a CT scan and brain MRI.
I spend a lot of time at the cancer hospital and it limits my ability to travel.
The doctors are overbooked with patients and so what should be a 90 minute appointment becomes a 3-4 hour visit.

Crizotinib causes my white count and ANC readings to drop and sometimes I have to go off the meds for a few days and then retest. This requires more commuting and changes in my schedule.

What has been the most challenging thing about having cancer?

Accepting the new me - the changes and limitations in my lifestyle. Keeping focused on HOPE and not allowing the challenges to get me down.

When difficulties overwhelm you, where do you go for support?

My husband has been a great support.
I have a broad network of friends who support me emotionally and family who pray for me.

How have your long-term goals or life goals changed since diagnosis?

I have learned to enjoy retirement and not look back.
I don't want whatever savings I have to outlive me.
I live in the moment and count the blessings I do have.
I try to help others to climb out of the dark side of cancer.

What is your work arrangement right now? What are your hours?

As a consultant, I have flexibility with my hours.
This January 2011, I took on an assignment for the first time in 3 years and regret it.
I realize I do not need the stress.
I continue to work with my business partners, managing the books and advising them.
I look forward to being fully retired and to dedicate my time to the pleasures of life and my hobby, writing.

Since the diagnosis, what has changed in your work life?

I gave up active work in order to focus on my health.

What advice do you have for others trying to work through treatment?

Focus on HOPE.
Don't expect your cancer to disappear. Believe that your daily life will improve.
Accept that you are LIVING with cancer - not dying of cancer

Manage your treatment; Manage your health.
Stay out of the public when your white counts are down; don't socialize with people with colds and infections.

You may borrow my mantra: cancer may attack my body but it will not kill my spirit.

How have you dealt with any side effects of treatment?

I use massage, acupuncture, tai chi.
I vary my nutrition to fit the challenge.
I convince myself that it is temporary and I'll get through this.

I'm competitive by nature - I focus on winning the challenge.
And then I forget about how bad it was. I do not like to relive or revisit the past.
I focus on the present and how it can affect the future.

If "today's you" could give advice to "day-of-diagnosis you," what would you say?

If you are given statistics (I refused to hear them at diagnosis) remember:
They are "mean" numbers. 50% of patients do better; 50% do worse.
I have always focused on doing better than the norm.

Many people with stage 4 cancer have lived for years, far beyond predictions.
New treatments are continuously introduced. There has been a tremendous change towards targeted treatment since my diagnosis in 2007.

Build your relationships within the clinical community, at your hospital of choice; it will serve you well when you need it.

Reach out and accept help from close friends,family and neighbors - don't shut them out.