Janet

Diagnosed in 2011

Janet has Stage IV lung cancer and is heavily involved in patient advocacy. She lives in the Pacific Northwest and loves the outdoors, travel and science fiction.

Remember that hope does not mean you have to ignore every bit of reality that's coming at you. Hope is living well with your disease in any way that you can.

These are the experiences, ideas and views of each individual person featured here. Your own situation may be different and these ideas may not work for you.

Janet's Journey With Cancer

  • Diagnosed with Stage IIIa non-small cell adenocarcinoma in 2011, now Stage IV
  • Multiple rounds of chemotherapy
  • Multiple radiation treatments
  • Targeted therapy for ROS1
  • Over two years NED (No evidence of disease)

At the time of diagnosis

I was stunned by my diagnosis. I really didn't know what to do except to follow what my doctor was instructing me to do. I didn't know about finding a second opinion, or that not all hospitals are as familiar with the most current lung cancer treatment options or technologies. My treatment had started before I figured out any of that.

Resources

One of the most useful resources was cancergrace.org, which is a website that covers several cancers, including lung cancer. Doctors - who are lung cancer specialists - blog about lung cancer treatments and new research.

They also participate in a moderated forum where patients can discuss lung cancer topics and ask the doctors questions. It's a good place to learn about your best options for treatment.

Searching Twitter using the hashtags #LCSM (lung cancer social media) or #lungcancer will pull up posts about new research, findings and clinical trials.

There are several forums where patients and caregivers can talk about their lung cancer experience and receive support from others who have been there, such as Smart Patients, Inspire, Lung Cancer Survivors Support Community, LUNGevity.org and the American Lung Association.

Some Facebook groups also provide support, such as Lung Cancer Awareness. In these forums you can talk to other patients - patients who have exactly the same type of lung cancer you have, or are receiving the same type of treatment - and discuss what worked for them and what didn't.

I do suggest caution when joining an online forum. Lung cancer is a very difficult disease, and people can get very emotional. Sometimes you will find posts that are discouraging. Just don't read those - go find ones that address your concerns and provide the support you need. Also, be careful of posting anything online that you might not want others to know. While these forums are intended to be private, you cannot guarantee privacy online.

Emotions

There were bad days. I tend to try and be positive, but there were days that I just simply could not be positive.

For me, writing down my feelings helps me to feel better. Blogging has been a good outlet for me - both writing my own blog posts, and reading the posts of other lung cancer patients and caregivers.

I appreciated being able to go to an online forum with other patients and say, "Hey I'm just having one of those days, and I need to talk about the bad stuff."

If I've developed a relationship with someone on the forum, I can have a private conversation with them rather than being in the open forum if I don't want to share my negative emotions with everyone.

A little bit of exercise (like pedaling slowly on a stationary bike, or gentle yoga), or cooking a simple but healthy food, gave me a sense that I could do something about my disease. Those activities helped me feel better.

Perhaps the biggest problem for lung cancer patients is the loss of control of our lives. Cancer makes me realize that I really don't have any control over my life, much as I would like to think I do. For me, researching and learning about my disease, and writing about it, gives me the sense that I'm doing something positive about my disease.

Friends & Family

Some friends came to see me. Other friends, who in some cases were dealing with cancer or a serious illness in their own family, apparently found it was too stressful for them to be around somebody who was really sick. Some people had difficulty understanding that if I don't look sick, I'm still having difficulties with things.

Sometimes when I was with groups of friends, they would have a look on their faces that conveyed, "Oh I'm so sorry." I got tired of seeing that after a while. I know their concern was genuine and they really cared about me, but sometimes I just wanted to have a normal life and not think about cancer.

Health & Fitness

I'm trying to make sure that I get exercise every single day, whether it's gentle yoga, walking on the treadmill while watching TV with my son, or going out for a walk with my family to a nice place.

When exercising, I used a device called a pulse oximeter to track my blood oxygen saturation. When my oxygen saturation dropped too low, I knew I needed to slow down or exercise more gently. This technique helped me rebuild some of my stamina and lung capacity after lung cancer treatment.

Diet & Nutrition

A really great book I bought early on was "The Cancer-Fighting Kitchen." It focused on whole foods that were pretty simple to prepare.

It has a great section at the beginning of the book that says, "If you are having this side effect from cancer treatment, try that recipe."

After weight gain from a year of steroids, I'm trying to watch my diet and get my weight in a reasonable range without reducing calories. I keep a lot of protein in my diet because of some cancer treatments tend to lower my blood protein level.

Hobbies & Leisure

I love reading, writing and watching science fiction.

When I was first diagnosed and I didn't know how to handle it, I watched a lot of comedies - in some cases really ridiculous comedies.

I needed to laugh, and the laughter was good for me. When I felt well enough, I went to science fiction conventions so I could talk about things that I enjoy with people who understand and catch my nerd humor.

Humor makes a huge difference. I think it makes my disease more accessible for other people. It can help put people at ease. It certainly helps me relax a little more, which is sometimes tough to do when undergoing treatment.

Travel

Now that I'm on targeted therapy and I've been NED (no evidence of disease) for a couple of years, and I'm feeling healthy, I'm getting brave enough for international travel again.

Last December we went to Cancún, Mexico. I pretty much sat out on the balcony or on the beach and listened to the waves. It was wonderful.

All of a sudden I realized that there was a little piece of normal back in my life. That makes a big difference. It was so nice to do something that everybody else does.

Now I'm feeling brave enough that we've actually got a trip scheduled to go to Europe.

Pulse oximeter

I take a portable pulse oximeter with me that not only checks your pulse but also your concentration of blood oxygen. I can see if my oxygen is dropping too low and I need to use supplemental oxygen, or just slow down a bit.

Oxygen on a flight

I did take portable oxygen on a flight with me once. I knew that I had to tell the airline in advance that I would be bringing portable oxygen on board, I had to get a certificate from my doctor, and the portable equipment had to be FAA certified. What I didn't know is that it matters where I sat on the plane.

I had made a reservation for an aisle seat. When I got there and the gate attendant saw that I intended to use an oxygen compressor during the flight, I had to change to a window seat. The airline doesn't want you hooked up to a cable that's going to block other people from getting out in an emergency.

Travel insurance

There are a lot more travel insurance restrictions when you have advanced lung cancer - some policies won't cover me. Some policies require that I declare I have lung cancer as soon as I make the reservation. I also have to buy my travel insurance within a week of making the reservation, or the insurance company won't cover the pre-existing conditions.

I have talked to other lung cancer patients who do a lot of traveling. Metastatic patients don't stop living just because they have lung cancer.

Work

I have always been a writer. I wrote as a part of my engineering work, and I wrote for fun, but I just started getting short fiction and science articles published in the year or two before I was diagnosed.

I found it difficult to write while dealing with chemo and radiation - I couldn't think clearly or focus well. I had "chemo brain" and had trouble organizing my thoughts. It's a loss to not be able to perform as well as I'm used to doing. It took a while to find what I could do with my post-treatment brain.

I still have trouble with word finding and short-term memory (the nice thing about writing is, I can edit). However, once I started to feel better, my writing muse came back. Now my writing mostly relates to my lung cancer experience, advocacy, and translating science for other patients.

Having a purpose makes a difference. When I wasn't able to write, I spent a lot of time in the online lung cancer forums communicating with other lung cancer patients, sharing bits of my experience and encouraging other people. That was something that I could do that didn't require me to get out of the house when I wasn't feeling well during treatment.

Finances

Travel is not covered by my health insurance and often isn't covered by clinical trials. However, there are resources available to help with travel expenses. For instance, the American Cancer Society has Hope Lodge locations where you can stay for free near major cancer centers (requires advance reservations), or may help with hotel costs.

Some organizations will provide rides to get to and from the airport or to treatment centers. Some services like Cleaning for a Reason will clean your house for free. Others like Patient Access Network Foundation will help with co-pays for prescription drugs. Some pharmaceutical companies will provide targeted therapy drugs at a substantial discount to those who do not have adequate insurance coverage.

These services can be incredibly useful. Unfortunately there's no one place at the moment where you can go to look them all up. You still have to do a lot of legwork yourself.

Janet's Perspective

Go get a second opinion at an academic cancer center that's in the National Comprehensive Cancer Network.

I'm learning to live for today. That doesn't mean that I live with abandon and trash anything that might possibly be good for my future, it just means that I try and find some joy in today and enjoy what it is that I'm able to do.

If all I can do on this particular day is to sit and look out the window at a tree, I can enjoy the amazing tree.

I find something that I can do for myself for that day, and try and do something that contributes to the welfare of others. That helps me feel like I'm a part of everything.

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