Expiration Dates

When I was first diagnosed with stage IV metastatic breast cancer (MBC) in 2015, my husband and I had many, many questions for my new medical oncologist, Dr. K. At the top of the list was “how long can I expect to live with this disease?” I found that was an easier question to write down than it was to actually ask. Fortunately, Tim asked it for me.

And it was clearly a question Dr. K has had to grapple with on a regular basis. His explanation of the basics of how MBC works was well practiced; his answer to the life expectancy question was something to the effect of “we don’t know for certain, but here’s what the research says” He explained what the statistics are, how every person is different, and how every MBC has its own unique characteristics. On the positive side, HER2+ cancers, like mine, have a number of treatment options so if the first one fails, there are other options you can follow up with. On the negative side, HER2+ cancers were more likely to spread to the brain than other types, decreasing survival rates in those patients. We had been trying to process and put a face to this new horror in our lives. But we learned that there isn’t a single face of stage IV MBC.

One phrase I hear frequently in the MBC community is “no one has an expiration date.”  I agree in the sense that I know I am not a carton of milk (although I look at myself and see I’ve turned chunky and somewhat sour since my diagnosis).

But while this phrase is usually meant to encourage metastatic patients to not give up – to try that next treatment or find a new doctor or stop worrying about statistics and focus on living life – I now find myself rolling my eyes up in exasperation when I hear or read it. I’m the sort of person that plans ahead and thrives on clarity, not wishy-washy platitudes. Right now I want to know, within reason, how much time I have left on this earth. And if I exceed that expectation, more power to me.

When I had the crainiotomy back in May, Tim took our neurosurgeon, Dr. Chiang, aside and asked her what she thought about our planned trip to London in July. She said “go ahead and have a good time!” That was the answer we wanted to hear. Then he asked her if she thought I’d still be okay (translation: alive) for Cas and Jasper’s graduations next year. She wasn’t as enthusiastic about that possibility.

I was 20 feet away in my room, head covered in gauze, so I wasn’t a part of the conversation, but Tim told me a few days later that Dr. Chiang felt 6 months to a year was a reasonable expectation for me to still be on this earth. Of course, that doesn’t fit into my plans. I want at least a year to see my “babies” cross those stages and get their hard-earned diplomas. I know that the doctor doesn’t have a crystal ball and is just making an educated guess, but it did rock my world a bit to hear that answer. It’s also, strangely, given me a renewed sense of purpose. My goals haven’t changed, so I’ll just have to do what I can to make sure the medical timeline aligns with the goals.

 

11 thoughts on “Expiration Dates

  1. If my time as a hospital chaplain intern 18 years ago taught me nothing else, it taught me the power of human will. I was honored to be a part of some of those moments in the lives of strangers. I’m convinced my grandmother — who had told me my entire life that while she didn’t expect to see my brother grow up and have a family, she had always prayed to at least see me do so – purposely waited to meet my 5-month-old son before she departed. She couldn’t verbally communicate with me in the end, but eyes spoke volumes. If anyone has that kind of willpower, especially one buoyed by all the people with equal amounts of sheer determination, it is indeed you. You are going to see your babies take their respective walks because that is what you want. I’m going to stand in agreement with you for that and make that part of my prayers for you.

    Liked by 1 person

  2. Oh Paula
    You keep those positive thoughts and good vibes
    You will see Cas & Jasper walk across that stage
    You keep that courage going
    You are the strongest woman we know
    Love you
    Biggest hugs coming your way
    ❤️😘

    Liked by 1 person

  3. Pingback: This Year’s Lisa Award Recipient. Only One and the Only One Awarded Twice….Here’s Why. | Diabetes Dad

  4. I say you will push those limits and make it to the stage to see them crossing. You have blown me away with the strength you have shown throughout the last 3 years. Why not be the one to see them graduate? If anyone can do it, it’s you. Keep your cape on , you are super human and I am pushing for you. You’re one of my favorite people, favorite woman, and mother. MBC can f@*k off. I love you!!
    Karen

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s