Janet Freeman-Daily is a writer, speaker, science geek and epatient with metastatic lung cancer. She uses her systems engineering background to translate the experience and science of lung cancer treatment and research into language other patients can understand. She comoderates the Lung Cancer Social Media (#LSCM) Chat on Twitter and blogs at www.grayconnections.wordpress.com.

Janet Freeman-Daily

Life has an odd way of reinforcing its lessons.

Due to my own lung cancer journey, I've learned a lot about the uncertainties of cancer diagnostic procedures and treatment. I've learned that cancer is sneaky; sometimes it doesn't announce itself until it is in advanced stages, doesn't behave as expected, doesn't present a clear diagnosis with a "best" treatment option. And I've learned the value of making treatment choices that allow the patient to do what matters most to them, rather than prolonging life at any cost. For many patients, qualify of life is more important than quantity of days.

Recently, life gave me the opportunity to apply my hard-won wisdom to my beloved 14-year-old cat, General Nuisance.

General is a fluffy, snuggly ball of love. He has been MY cat since the moment we adopted him. Rescued as a feral kitten, he gradually overcame his extreme skittishness and allowed my husband and son to give him attention, but I'm always his first choice among humans. Though he is a favorite with the techs and doctors at the vet (the focus of doting attention), he always cowers when he's there, and never really adapts to his posh kitty condo when he boards with them. His greatest joy is to be with me, and he expresses it with a resonant purr that can be heard across a room.

General also has long-term gut and anxiety issues. Last week, the gut symptoms took a turn for the worse. His anti-nausea medication was losing its effectiveness, and he was clearly feeling unwell despite his inborn feline tendency to hide his infirmities. I took him to the vet for X-rays and an ultrasound.

The X-rays revealed a walnut-size tumor in one lung, as well as a large abdominal mass which was not visible on X-rays five months ago. The ultrasound showed the gut mass was a combination of a thickening in his gut wall (characteristic of inflammatory bowel disease, or IBD) and enlarged lymph nodes in several places. Since lung tumors in kitties tend to be metastases from elsewhere, and the lymph nodes were enlarged, General likely has metastatic lymphoma, or some other kind of metastatic cancer, as well as IBD and his long-known progressive kidney failure.

I cried a lot as I waited in the small exam room for his test results.

I was responsible for making the best possible decision for General. Fortunately, the lung tumor is not yet impeding his breathing, but given that metastatic cancer is not curable in humans, I asked what we could do for General if he did have cancer. The vet said that because General's enlarged lymph nodes are widespread, surgery would probably not be an option. Chemo would be a possibility, but is not often effective in his suspected type of cancer (lymphoma) and might be hard on his already failing kidneys. I asked if chemo for metastatic cancer is as difficult for cats as it is for humans. The vet said it would be rough. He explained that typical cat life expectancy for metastatic cancer might be six months with chemo, but giving an accurate prognosis for a cat was difficult and complicated by General's gut and kidney issues. My kitty might have less than two months, or as much as two years. I would need to consult a veterinary oncologist for more specific information.

I asked how we could confirm that he had cancer. Similar to humans, the only ways to get a definitive cancer diagnosis on a cat is to get a biopsy sample of a tumor using a fine needle pushed in from outside the body, or surgery. The fine needle biopsy would be uncomfortable at best, and might or might not obtain tumor tissue from the tiny lymph nodes (as I know from the failure of one of my own biopsies). Surgery would weaken him more and be painful.

I thought of the fear that this anxious kitty would experience during weekly vet visits for intravenous chemo. I thought of my own physical discomfort during chemo, and how my kitty would not understand why he was feeling so lousy. I thought of his age (he's an old guy in cat years), and IBD, and the impact of chemo on his kidney disease. Then I thought of General's joy at being home with his humans.

I decided then that I was not going to make General take chemo. For this nervous kitty, in his current state of health, chemo would not provide his best quality of life for however many months he has left. In light of this choice, I chose not to subject General to the discomfort of a biopsy. While I would like to know his diagnosis with certainty, the results of the biopsy (whether definitive or unrevealing) would not make a difference in his treatment.

After further discussion, General's care team decided to tweak his medications and add a steroid to treat his IBD. The steroid should reduce inflammation, ease any breathing issues and boost his energy; if it's going to help, we'll know in the next five to seven days. I will keep an eye on his symptoms, and the vet will take a look at him again in a week (or sooner, if needed).

Though our fur babies bring much light and joy into our lives, they are with us for only a short while. We are responsible for their well-being while they are in our care. No matter what we do, all pets eventually die. I'm already grieving General's impending loss, yet I need to stay in the moment. For as long as possible, I aim to shower my fluffy, devoted orange boy with love and attention in his most familiar and comfortable setting, so that he might feel the greatest possible joy in whatever time he has left.

When I can no longer keep him comfortable, I'll let him go. I hope we'll meet again at the Rainbow Bridge.

If my metastatic cancer progresses to the point that I am unable to make choices for myself, I trust my family will give quality of life first priority for me. 

Articles

When my feline companion developed cancer, quality of life became more important than quantity of days.

Cancer Choices: Quality of Life Versus Quantity

Janet Freeman-Daily, patient advocate and CURE contributor, discusses some key points that patients should know about enrolling in clinical trials.

Freeman-Daily says that clinical trials are especially important for patients like her who have metastatic lung cancer, for which there is currently no cure but a number of options and clinical trials that may benefit patients.

Before joining a clinical trial, patients should know their risk and understand the difference between each of the three phases of clinical trials. Also, patients should never think that they may not be treated in a clinical trial. Even if randomized to placebo, they will always get the best standard of care.

Videos

Janet Freeman-Daily, patient advocate and CURE contributor, discusses some key points that patients should know about enrolling in clinical trials.
 

Patient-to-Patient: What to Expect in a Clinical Trial

This year, I was among the advocates for patients with cancer who applied for and were selected to participate in the 

. As part of the program, I attended the 

The program consisted of an orientation day, including an excellent “Cancer 101” briefing by Dr. Carolyn Compton; SSP-only sessions in which advocates met with top researchers to discuss specific topics such as immunotherapy and FDA policies; presentation of an original poster during an AACR poster session; a group project in which a scientific advisor and an experienced SSP mentor helped us explore a major aspect of cancer research; evening networking events; and, of course, attending the Annual Meeting with cancer researchers.

Posters created by advocates talked about a variety of subjects, including cancer journeys, advocacy organization outreach and even personal research projects. 

 discussed the benefits of the Lung Cancer Social Media (#LCSM) community on Twitter. Thank you to my fellow #LCSM Chat Core Members for their valuable suggestions and feedback!

I didn't understand every presentation in the actual AACR meeting -- in at least one presentation I didn't understand ANYTHING (gene editing is very technical) -- but I did come away with a better understanding of the scope of cancer research, some of the issues impeding progress and a list of topics I wanted to explore further. I loved listening to researchers explain cutting-edge work that might lead to better cancer treatments.

Some of the fascinating sessions I attended discussed:

		Understanding how a cell's microenvironment might promote or inhibit cancer tumors and responses to therapies

		Insights into cancer cell metabolism and evolution

		Methods for detecting driving mutations in cancer cells

		Using epigenetics to block cancer-causing pathways in cells

		Engineering the immune system to personalize treatment

		The "value in cancer care" debate from the patient, researcher and regulatory perspectives.

Of course it was impossible to see everything. Some of the fascinating posters and sessions that I missed touched on using viruses to prime immune responses, improving effectiveness of therapies through combination such as immunotherapy and radiation, inhibiting DNA repair in cancer cells and using big data to inform cancer trials.

Aspects of the SSP experience that stood out for me:

		Meeting and networking with patients, survivors and advocates across a wide-range of cancer types

		Being greeted, by name, in the hallway by a researcher who thanked me for my live tweets during the opening plenary session

		Sitting in the front row as Vice President Joe Biden talked about the Cancer Moonshot

		Attending a plenary session about cancer evolution and targeted therapies with my friend and fellow lung cancer advocate Linnea Olson, and seeing a scan of her lungs appear on the big screen

		Having Dr. Jean Cui (a lead chemist on the Pfizer team that developed my current oral cancer therapy, Xalkori (crizotinib)) personally explain her poster about the newest drug she developed to treat my ROS1-rearranged cancer (as well as ALK- and NTRK1-rearranged cancer)

I highly recommend any cancer patient advocate who is interested in research to apply for the program! Thank you to the Bonnie J. Addario Lung Cancer Foundation for supporting my application to the AACR Scientist-Survivor Program.

You can view my poster "Online Collaboration & Support in the Lung Cancer Social Media (#LCSM) Community" 

The AACR Scientist-Survivor Program lets cancer advocates network with the scientists who are driving cancer research. 

Advocacy and the Science of Cancer Research: The AACR Scientist-Survivor Program

 with about 20 other science fiction writers. The resort where we stayed is on the southeast tip of Lake Quinault, adjacent to the southern border of the Olympic National Park in Washington State. It was quiet, beautiful, and slow-paced—the perfect place to take a break from everything and focus on my writing.

After lunch the first day, I decided to take a meditation walk along the lakeshore in hopes of absorbing some of the abundant tranquility. When I walked this same path 14 months ago, Washington was experiencing a drought. This year, we’d had our wettest winter ever, and the level of the lake reflected the additional rainfall. Tree roots normally anchored on the mossy bank now stood in a couple of feet in water.

The first hours of the retreat were graced with several downpours, but for the moment, the rain had stopped. I took deliberate steps along the soggy pathway, carefully placing my feet to avoid adding 

 to my medical file. I concentrated on taking slow, deep breaths. Gradually my thoughts came to rest in the moment. I smelled the surrounding evergreens, felt the moist rainforest air, heard the enthusiastic creek swollen with runoff, saw a raven stepping carefully on puddled lawn.

I meandered past deserted trailer slots and a closed bathhouse to the end of the campground, where stood the 

. There I encountered a couple of other writers who were also taking a break from their labors. We imagined the tree was lonely and had called for company. Eventually, the others wandered off, leaving me alone with the tree and my thoughts.

Despite hundreds of droughts and downpours, the 10,000-year-old giant before me stood firmly anchored in the earth, continually adding rings to its impressive girth. The diameter of its trunk exceeded twice my armspan, and the massive roots spread at least twice again as far.

Standing under its broad arms, dwarfed by its great size and age, I was struck by both the difference and the similarity between us. It had outlived its contemporaries by decades, even centuries. I likely would not reach the average life span for my species. Yet neither of us knew for certain how much longer we would live on this earth. All we truly had was the here and now.

I felt drawn to its strength and broad grounding. I extended one arm towards the giant, one arm back towards my life, and positioned my legs to form the “

I’d learned in yoga class last year. I felt the earth solidly beneath my feet, and drew deeply on the rainforest air. In that moment, I was an old growth tree, extending my branches over my wide root base, absorbing the goodness of the earth and clean mountain water, cleansing my system, in harmony with my environment. The rain clouds parted, and sun streamed through the evergreen canopy, highlighting our bond.

The moment passed, and I returned to my own body that was sustained by anticancer drugs. Yet, as I walked away from the ancient tree, I felt I had gained stature and substance. Regardless of how much time I had remaining, I would seek balance and grounding while raising my face to the sun.

Back at my cabin, I started writing, conscious of the lake, evergreens and bits of light from the sinking sun.

Nature offers many role models for coping with cancer's challenges.

Janet Freeman-Daily

Cancer Choices: Quality of Life Versus Quantity

Patient-to-Patient: What to Expect in a Clinical Trial

Advocacy and the Science of Cancer Research: The AACR Scientist-Survivor Program

Communing With a Giant on Cancer, Life

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