Category Archives: survivor

Reminiscing … The Day My World Shattered

My six-year cancerversary is upon us so I guess it has me thinking about the journey I’ve been on. I might have chemo brain that robs many of my memories, but I surely remember hearing the words, “You have cancer.”

Cancer … But What Kind?

While I already suspected that I was getting a cancer diagnosis because my primary care doctor (PCP) had ordered a PET scan, I didn’t know what kind of cancer. I was hoping against all hope that it was going to be thyroid cancer. After all, it was weight gain that had sent me to see her in the first place. It would make some sense that my thyroid had a malignancy.

While I waited for my diagnosis, I reasoned that we could just go in, take out the offending thyroid, prescribe some pills to replace the missing hormone, and all would be well. Cancer gone. Life restored. Carry on.

I hoped against all hope that I wasn’t going to hear that I had lung cancer. I had no reason to think that would be the case. I had quit smoking years before, I was more active than I’d ever been, I felt great. Really, the only problem I had was the unexplained and seemingly uncontrollable weight gain. Surely, I wasn’t going to be told I had lung cancer.

“The” Call…

My husband and I had just pulled up into the parking lot of an Asian barbeque restaurant when my PCP called me to finally tell me the results of the PET scan. My husband and I had been waiting not so patiently to learn the results of the scan I had undergone about a week earlier. So, I was happy … and scared … when my doctor’s name showed up on the caller ID.

The call didn’t last very long. My doctor told me that I had lung cancer. My heart sank like a ton of bricks. I had watched my dad die of lung cancer back in the 1970s. I knew enough to realize this was not a diagnosis anyone wants to hear. There was a (very) tiny sense of relief when she told me it was non-small cell lung cancer. I’d read that small cell was even more difficult to treat than non-small cell.

My husband was sitting in the driver’s seat of his truck, looking at me with questions in his eyes. Whatever my diagnosis was, it would affect many more lives than just mine, especially his. I wrote “lung cancer” on a scrap of paper and showed it to him.

I remember my doctor telling me that she’d set me up with an appointment the following day to see an oncologist. I was so grateful that (1) she had handled finding me a cancer doctor and (2) that I wasn’t going to have to wait except overnight to go see him.

Keeping Up Appearances

After I hung up, my husband and I sat in his truck and discussed the call for a couple of minutes. I shed a few tears. Then, we went inside to eat so that I could get back to work. I was really happy the call had come while I was away from the office. Processing the news away from prying eyes was definitely easier.

I remember sitting at that small table in the crowded restaurant, looking around, and wondering what secrets the other patrons had that no one else knew. Outwardly, no one would suspect that I had just taken a call that shattered my world. It was surreal to be sitting there, eating a meal as if we had not a care in the world.

And, So It Began…

And, so began the journey that has taken me to places I would have never guessed I would go. What an adventure it has been.

What’s your story? Will you share it with us?

AICR – What Role Do Exercise and Diet Have on Cancer?

Have you heard about the American Institute for Cancer Research (AICR)? It is a foundation that is dedicated to exploring the role diet and exercise have on cancer. They believe that as much as 40% of cancer in the United States can be prevented. The foundation also believes that “every individual has the power to reduce his or her cancer risk.”1

I am a bit cynical about whether we can prevent nearly half of all cases of cancer in the United States simply by controlling our diets and exercise, but that’s just me. The AICR does include weight control and smoking among the risk factors that are under our control but correctly notes that many thousands of smokers never develop lung cancer and that many Americans who are overweight also do not develop cancer.

The exact percentage of cancers that might be preventable notwithstanding, it makes sense to pay attention to diet and exercise while we are fighting the disease. Lifestyle definitely affects how well we are able to boost our immune systems and, perhaps, counteract some of the side effects of treatment.

While the report says that as much as 90% of lung cancer cases among men and 89% of cases among women throughout the world have a direct relationship with smoking, it includes two other potential causes:

  1. drinking water that contains arsenic and
  2. taking high-dose beta-carotene supplements if you smoke or have ever smoked.

In addition, researchers believe processed meats, red meat, and alcoholic drinks may increase our chances of developing lung cancer. I can easily give up most processed meats (you bacon lovers, don’t forget it is considered processed meat) and alcoholic beverages, but I do love to eat red meat occasionally. I thought that pork was considered a “white” meat, but I heard recently that it is also considered red meat.

Fortunately for those like me who haven’t given up their red meats, AICR does state in its latest report, “The evidence suggesting that consumption of red meat increases the risk of lung cancer is limited.”2 I’m going to go with that! Please note that the same report also says, “The evidence suggesting that consumption of alcoholic drinks increases the risk of lung cancer is limited.”2

If you are interested, you can download a free, 71-page PDF document from AICR called, “Diet, Nutrition, Physical Activity, and Lung Cancer.” The document is part of the Continuous Update Project (CUP) of the World Cancer Research Fund’s ongoing program to analyze cancer prevention and survival research and was updated in 2018.

 

1American Institute for Cancer Research. “About American Institute for Cancer Research.”  http://www.aicr.org/about/about_cancer_research.html. Accessed 9/30/2018.

2World Cancer Research Fund/American Institute for Cancer Research. Continuous Update Project Expert Report 2018. Diet, nutrition, physical activity and lung cancer. Available at dietandcancerreport.org. Page 39. Accessed 9/30/2018.

 

 

 

 

Dare We Say the “C” Word at the Same Time as Lung Cancer?

When I was diagnosed with lung cancer, the chances that a late-stage lung cancer patient would live five years was merely 4%. In fact, the American Lung Association, even today, gives the following survival rates:

“The five-year survival rate for lung cancer is 55 percent for cases detected when the disease is still localized (within the lungs). However, only 16 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4 percent.”1

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My Friend or Loved One Has Cancer. What Can I Do to Help?

Not so long ago, the question about what a friend could do for a loved one who had been diagnosed with cancer came up on a forum where I participate. I thought some of the responses from patients might help those who want to do something, but don’t have any ideas as to what to do.

A Bag Full of Goodies

When I was first diagnosed, my officemates took up a collection and bought a big bag that they filled up. They included beeswax lip balm, ginger candy (great for nausea), tissues, water, a small blanket, a journal and pen, a word search puzzle book, fuzzy socks, lotion, hand sanitizer and more. Additionally, they gave me a couple of pairs of comfortable lounging pajamas that I could wear when I got my treatments.

I still use the bag when I go out of town and often when I go for my treatments. I never use it that I do not think of my friends and feel grateful for them.

Another person posted that her sister gave her a diaper bag filled with many of the same kinds of things. Using a diaper bag is a great idea – they are usually pretty light-weight, have lots of nooks and crannies, can often be washed, and are roomy.

Gas Cards, Parking Passes, Restaurant Gift Cards

Cancer treatments often zap a person’s finances. It is sometimes difficult to afford the gasoline just to get to life-saving treatments. Several people on the forum mentioned how much they appreciated getting gas cards.

Similarly, many hospitals and clinics are located where you have to pay to park. At my facility, you have to use valet parking. It is $5 plus tip every time you go. If treatments are frequent, this adds up in a hurry. Giving the gift of parking passes is a huge relief for over-burdened pocketbooks.

Thinking about cooking after being in treatment all day is the last thing most cancer patients want to do. Having a gift card to a local restaurant would be a lovely way to end a long day.

Never Underestimate the Value of a Card or Phone Call

Unfortunately, cancer is often a lonely disease. Too often, it seems like people think it is contagious or something. So, just when you need it most, your support falls by the wayside. I think part of it is “out of sight out of mind” more than an overt action by friends and acquaintances but the result is the same.

It is uplifting to get an unexpected “I’m Thinking of You” card in the mail. Even better is a brief phone call, just to check in. If you’re like me and not much of a telephoner, a text message is also a way to get in touch. The point is not so much the vehicle used as it is to let your friend know you haven’t forgotten them.

When I was first diagnosed with cancer and was suffering from the terrible fatigue that accompanies many chemo treatments, I began sitting in my backyard photographing birds. I would then post the pictures on Facebook. One day, I received an unexpected package. A friend had sent me a bird identification book. It was such a thoughtful gift and meant the world to me.

Other Ideas

I will end with a list of more ideas that might be just perfect to show your friend or loved one how much you care:

  • Give a ride to treatment, the grocery store, or the park.
  • Bring over a meal. Even if the patient is too sick to eat, the family still needs nourishment.
  • A soft hat for those who have lost their hair may be appreciated.
  • A cozy blanket will surround the patient with love and warmth.
  • If they have a port, a port pillow can be a lifesaver.
  • Clean their house or mow their yard or do their laundry. These chores don’t go away just because someone has cancer.

What kinds of things have you gotten that meant the world to you? Sometimes, the smallest things, given from the heart, mean the most.

 

 

Deciding on Radiation Treatments

“Your tumor is growing. I am sorry, but I am pulling you out of your clinical trial,” my oncologist said. And, with that, my world came crashing down all around me.

I was in the trial for four years. I loved it. I felt comfortable in the trial. I didn’t want to leave it. But, it wasn’t my decision. And, honestly, it made no sense to remain in it if at least one tumor was no longer responding to the treatment.

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I had to retire. Now what do I do?

Way too many of us find that we can no longer continue to work at an 8-5 job after we are diagnosed with cancer. Besides the challenges of having to miss work all of the time to go to doctor’s appointments and to have regular scans and infusions, many of us simply no longer feel good enough to be able to go to work every day.

Retirement setbacks

For me, deciding to quit working was difficult. I didn’t have quite enough time in to receive my full social security benefits and I didn’t have quite enough time in to get my full teacher retirement benefits either. So, when I quit working, our income took a major hit.

No money meant a real lifestyle change. I know I am not the only person who has faced this particular challenge.

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Medical Marijuana – An Idea Whose Time Has Come?

I attended a LUNGevity Lunch and Learn meeting yesterday. During the Survivor Stories session, a man I will call Jack began telling his story. He was diagnosed with advanced small cell lung cancer a year or two ago. His oncologist told him that he would likely live for 2 to 4 months if he did no treatments and that he would likely live 6 to 8 months if he underwent treatment.

Jack’s testimony

Jack is a relatively young man, likely in his 50s, and wasn’t quite ready to throw in the towel on life. While undergoing traditional treatments, he began researching the use of medical marijuana. He wanted to find a cure for his cancer more than he wanted to find a way to control his side effects, the use we hear of most frequently in relation to medical marijuana.

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If You Toss Enough Seeds, Maybe One will Land on Fertile Ground

I am dumbfounded right now. I just finished writing a blog post that is highly critical of my Representative in Congress. I now have to retract what I wrote (it was never published) and tell a slightly different story. I am delighted to have to make the change.

Here’s the story

I went to Washington, DC last week. I joined about 150 others who were at the Lung Cancer Alliance 10th Annual Summit. The purpose of our meeting was to lobby our Congressional leaders to (1) cosponsor the Women and Lung Cancer Research and Preventive Services Act of 2018 (S. 2358 / H.R. 4897) and (2) restore $6 million in funding to the Lung Cancer Research Program within the Congressional Directed Medical Research Program administered by the Department of Defense (DOD).

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FCR: A New Mental Condition

Do you have FCR…Fear of Cancer Recurrence? FCR has been defined as “fear, worry, or concern relating to the possibility that cancer will come back or progress.”1

Now that we have a definition, we need a study about it, right? Well, luckily, there is just such a thing. This study, being conducted at the University of Illinois in Chicago, examines the lack of knowledge around the prevalence of FCR.

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