While I Wait For Answers...

Waiting. When we are first diagnosed, doesn't it seem that all we do is wait? I was diagnosed almost six years ago but have reached a period in my treatment that side effects are causing me to need to find something else. So we begin with the initial CT scans, MRI's, X-rays, etc. I was on Opdivo for four years and it worked so well, that it shrunk all my lung tumors to less than 5 mm in size. Not big enough for another biopsy but not "gone" so we can ignore it.

Playing the waiting game

I haven't been in treatment for months now and I had my CT scan in October so now I wait until January for the next one to see if the tumors are waking up again. It is so hard on my nerves to not be on my treatment of any kind for that long. It reminds me of when I was first diagnosed. It took from January to May to get a definitive answer and confirmation that I had lung cancer. It may have been years ago but I remember it like it was yesterday.

I scoured the internet for information and what I found was so much more. I found several organizations that impressed me so much that I now align myself with them and attempt to advocate for newly diagnosed patients and help them navigate this thing we call cancer.

We have more options today than before

Cancer is NOT the death sentence that it once was. Research and subsequently new treatments have enabled patients to live for years with active cancer in their bodies. Unfortunately, the one place we fail in is the initial diagnosis stage. Many times I meet people who have been fighting symptoms for months even years being told they had asthma, pneumonia, etc., only to find out they had lung cancer. The diagnostic procedures have taken so long that it is now stage IV. But, don't panic yet -- there are still many options for stage IV patients.

Surround yourself with people who support you

While waiting, whether in the beginning or years down the road like me, make sure you surround yourself with the best and most supportive team you can.  Family, friends, primary care physician, oncologist, palliative care team, and anyone else you can find. Ask yourself a few questions about each professional member of your team:

• Do I feel this person listens to me? Listens to my caregiver?
• Answers my questions in terminology I can understand?
• Do I feel comfortable "questioning" everything they tell me -- not because you disagree but to make sure you understand?
• Does this person get frustrated with the number of questions I ask?

Take care of yourself

Remember, you cannot fight the good fight without all the information so arm yourself with as much info as you can. Make sure during your downtime and waiting that you put it to good use. Waiting can be a daunting task that can raise your anxiety so keep yourself busy. Rely on family and friends at this time.

Editor’s Note: We are extremely saddened to say that on January 28, 2020, Jennifer Toth passed away. Jennifer was a passionate advocate for the Lung Cancer community. She will be deeply missed.