Tag: metastatic breast cancer

Practically Positive?

~ I believe it is very important to stay positive.

~ I believe no one should tell someone else who is hurting to “stay positive.”

~ I have told people to “stay positive” in the past and I sincerely apologize to each one of you.

My definition of positive looks different than other people’s definition. I take my definition of positive from my favorite book of the Bible, The Psalms.

Psalm 13:1-2 is wonderfully uplifting: How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I take counsel in my soul and have sorrow in my heart all the day? How long shall my enemy be exalted over me?

One of my favorite hymns cheerily begins with the lines from Psalm 130: Out of the depths I cry to you, O Lord! O Lord, hear my voice! Let your ears be attentive to the voice of my pleas for mercy!

Psalm 88:14-15 is really upbeat: O Lord, why do you cast my soul away? Why do you hide you face from me? Afflicted and close to death from my youth up, I suffer your terror; I am helpless.

My oncologist told me in the fall of 2019 that I had somewhere between 2 and 30 years left to live. When I told people that, several remarked that most people my age could say that. (Not helpful or true!) After we learned the cancer had spread to my brain, my oncologist would not give me an update in years, but did tell me I should switch to working no more than half time so that I could spend time with family. (Yikes and no, half time at my company is not an option. I am a department of one. ) I have researched this and have learned that oncologists are trained to take the true predicted life expectancy and multiply by 3 to get the top number and divide by 4 to get the bottom number. Ten times 3 is thirty and ten divided by four is two and change. Since the median life expectancy for all MBC patients is 2.5 years, I really didn’t learn anything from asking my oncologist this, and I don’t believe it is a question that has an answer. Through online groups I know many people who have endured MBC more than a decade. At Barnes (pre-Covid) I met 3 volunteers who have had MBC 13, 15, and 17 years. Sadly, I also know many in my online groups who don’t make that 3 year mark. If you are keeping score at home, it has been 19 months since my diagnosis.

My definition of positive doesn’t allow me to poke my head in the sand and continue life without changes. My definition of positive does not allow me to wallow constantly in misery. I intend to only die once – meaning I need to focus on living so that death only gets its one moment with me. My bucket list has changed. I’ve already hit the first, my oldest child’s college graduation. (Darn you, Covid, for making an actual ceremony impossible.) The remaining items (so far) are: my youngest child’s high school graduation, my middle child’s college graduation, and my youngest child’s college graduation. My youngest is thinking of med school so I better stay focused on my treatments and taking care of myself! The final entry is to enjoy my remaining years with my husband and kids. Are there other things I’d like to experience? You betcha. Those are the things God and I talk about late at night.

So what does positive look like for me? Positive means I am working to support my family. It means that I have a bucket list that looks several years in the future, well past my median life expectancy. Positive means I am making journals and writing letters to my kids in case I don’t hit those milestones. It means I have travel plans with friends in upcoming years and we talk about them and they bring me joy. Positive also means that milestone days and holidays devastate me because I wonder if it is my last. Positive means that my husband and I have planned many little trips. Positive also means my husband is changing his work schedule to ensure we have more time together now. Positive means that sometimes I am so happy I cry. It also means some days I am so depressed that I cry.

God does not expect me to be happy all the time. People who tell you to not worry because God is in charge are either ignorant or mean. “How long, O Lord? I am helpless.” God understands our humanity. We need to allow ourselves and our neighbors to be human, too.

Where is the Instruction Manual?

My main goal in life for over 20 years has been to be the best mom I can be for my kids. I visit about this goal with God every night. My oncologist knows how important they are to me and she always asks me about my kids. At my appointment last week, I think we talked about my kids more than my cancer. My Nurse Care Coordinator through my insurance company asked me to set a goal for myself when she met me. My instant response was to be as healthy as I can in order to enjoy life with my family. That goal has never changed. She has me repeat that goal at the end of every phone call and it energizes me.

The world is full of advice on how to raise kids of all ages. It is pretty simple to find advice on how to tell kids you have cancer. There aren’t many suggestions on how to keep parenting when you have stage 4 cancer. My kids were 21, 18 and 16 when I was diagnosed 19 months ago. They are absolutely incredible and are well past the stage of needing discipline, but they are dealing with huge life changes and decisions to make —- college, major, job, living away from home, etc. There is a lot of pressure on them anyway and now they also have to deal with my illness. I despise what cancer has done to them.

Cancer makes me less of a mom. I have physical limitations now so I cannot walk long distances or do much climbing. Nineteen months of treatments have made a mess of my digestive system so I cannot be far from a bathroom. My energy level is much less than it used to be. I battle anxiety and depression. My immune system is compromised so I wear a mask in public and haven’t been able to go anywhere with them in a long time due to COVID. All three of them are so helpful to me and simply wonderful human beings. They deserve to not be weighed down by a mom with a terminal illness and I would give ANYTHING to remove this burden from them. I’m still looking for that particular how-to parenting book.