I’m grateful to be here. Actually, I’m grateful to be anywhere. I’m grateful to be alive. The fact that I’m alive is a modern-day medical miracle.
In May of 2011, after a few months of a persistent cough, I was diagnosed with pneumonia caused by advanced lung cancer. No, I never smoked anything except a salmon. Five months after diagnosis, despite chemo and radiation, the cancer spread outside my chest and I was given at most two years to live. A year later, after more treatment and another recurrence, I learned my cancer had a rare mutation. Last October, I found a clinical trial that could treat that mutation with an experimental pill, and I flew to Denver to get it. In January, I achieved the dream of all metastatic cancer patients: No Evidence of Disease. My cancer is no longer detectable.
I am overwhelmingly grateful for everything and everyone that has brought me to this state of grace: medical science that discovered new ways to treat my condition, insurance that paid for most of my care, family and friends who supported me, a knowledgeable online lung cancer community, and all the prayers and good wishes lifting me up throughout my cancer journey. Thank you. I am truly blessed.
I am not cured. The trial drug only suppresses my cancer, and I have some permanent side effects. I’ll be in treatment for the rest of my days. Clinical trials will hopefully keep me feeling comfortable and capable for many months – even years. I am satisfied with living however long I might have.
Being given a second chance at life tends to give one a different perspective. Colors are brighter. A warm breeze rustling the trees makes the whole day worthwhile. Time spent with family and friends becomes precious.
A second chance at life also makes one introspective. Why was I spared when others died? Why does my mutation have an effective treatment when others don’t? Why am I able to see one of the best lung cancer doctors in the world when many patients can’t afford proper treatment?
Why am I still here? What purpose does the universe have for me?
Part of the answer to why I’m still here is, I am blessed with gifts that help me survive my cancer journey. I’m able to understand the medical science and my treatment. I’m able to explain what I’ve learned. And I’m able to advocate for myself with healthcare providers.
Yet I am just a steward of these gifts that were bestowed on me. Understanding my gifts has led me to a new purpose: I am here to help other lung cancer patients. I strongly feel this is my calling in the time I have left.
Lung cancer has a stigma attached to it. Few people know that 80% of those newly diagnosed with lung cancer are nonsmokers or never smokers. There is more to lung cancer than just smoking. Yet we are the lepers of the cancer community.
For this reason, some are ashamed to admit they have lung cancer. Most don’t know about the new treatments like the one I’m taking–even some doctors don’t know. Patients don’t know where to turn for answers.
Lung cancer patients need more than compassion. They need information. They need HOPE.
After considerable thought, I decided the best way to use my gifts was to go public about my lung cancer. At first, I only shared my story online with friends and lung cancer communities. Eventually I started blogging (which is essentially a journal open to the world on the Internet) and began speaking publicly about my cancer.
Going public with my lung cancer experience has already had an impact. As I’d hoped, it shows patients that people can live with metastatic lung cancer, and encourages them to ask questions about their treatment.
But going public has also brought completely unexpected benefits. It helps families understand what their loved ones who have lung cancer are experiencing. It gives hospital chaplains insight into their patients’ needs and feelings. It demonstrates to doctors that patients can be partners in their own care. It reveals to researchers how their work makes a difference in the lives of real patients.
In addition, I’ve realized a personal health benefit in sharing the gifts I was given to steward. Having a purpose gets me through the tougher parts of cancer treatment. It won’t heal my cancer, but it does help me live a healthier, happier life.
And it all started with being grateful that I’m alive.
i am very very grateful that you are alive too. keep on speaking out about this. warmest regards,
Thank you, g.
A wonderful post Janet. There is no doubt in my mind that indeed you have a purpose. It is the Canadian Thanksgiving this week end so I found your post very timely. Keep on going the way you are Janet, Diane
Thanks for your continuing encouragement, Diane.
Thank you so much, this is really something I needed to hear for my husband who has lung cancer too.
I’m glad you find it helpful, Liz.
Janet, thank you for such a beautiful message from the fiancée of a man that has Stage IV Lung Cancer.
I’m glad you liked it, Renee.
Thank you, Z.
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Thank you sincerely, Janet, for your advocacy, bringing lung cancer into the light of day and out of the closet. Lung cancer patients feel so alone. Thank you, Thank you.
You’re welcome! And thank you for your kind comments.
I am truly grateful to have such an inspiring friend as you. Against the odds, I am thankful you are still with us and providing some hop to others in the lung cancer community.
Thank you, Crystal.
Congratulations Janet! The beginning of your story is much like mine…where it takes a twist is you were able to get help. Although I have Insurance…it does me little good. After living with the diagnosis of Stage IV Non Small Cell Lung Cancer since April of this year, I realized my Insurance people were not going to help me. I was either to old, the Cancer had spread to the bone or I needed to be sent on to another doctor within the system. There was always a reason or another stall. After 3 months and 10 CT scans, a Pet/Ct scan, 4 chest x-rays, mammogram and a lung biopsy it dawned on me that I was totally on my own. I am so happy for you. I have several friends trying to help me but Cancer is an expensive sport to play with and it all comes down to an Insurance company that refuses to offer a treatment or refer out and Medicare that refuses to help me with out my Medical Insurance approval. I gain strength from stories like yours…Good Luck and may you thrive to continue telling our story.
I’m so sorry you’re having such trouble getting treatment for your lung cancer. I’ve had to fight my insurance company too (see my post on “Insuring the Terminal Patient”). I hope you can find a knowledgeable and compassionate doctor who’s willing to do whatever he can to help you AND get insurance to pay.
I was diagnosed in March with non small cell adenocarcinoma (stage IV).
I have never smoked. What a shock! I had 4 rounds of chemo, liver and lung surgery to remove the tumors, and 5 weeks of radiation. I will have first 3 month scans in December. I am hopeful but petrified at the same time. I feel blessed to be a patient to a great team of doctors at MD Anderson Cancer Center in Houston. My tumor was found incidentally during a chest X-ray for another reason. I had no symptoms. I have great support from my husband of 34 years and from the rest of my family and friends. I just wish lung cancer received the same attention that breast cancer does. Thank you for your blog.
Thank you for reading my blog. I’m glad you have a great medical team supporting you in you lung cancer journey. I hope your December scan and all future scans are clean, and you’re dancing with NED (No Evidence of Disease) for a long time to come.
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