Leptomeningeal carcinomatosis

I didn’t know what those words meant until I started doing research in January.

Those words mean a grim prognosis for a person who has already been fighting cancer.

In layman’s terms – my mom’s breast cancer has spread to the membrane (meninges) that covers her brain and spine. It was already in her skull, so it doesn’t come as a great surprise that the cancer made it further than that. We don’t have confirmation if it has also made it past the membrane and into the brain itself.

They attempted to confirm this in January, after a concerning MRI, with a lumbar puncture (spinal tap) but did not find cancer cells in the fluid. What I didn’t know until recently – they almost never find cancer cells on the first pull. If I  had known this back in January I would have asked the oncologist back then what she would think of treating it.

Fast forward to April, and after another MRI – but not another lumbar puncture – they are certain my mom has LC. My gut tells me she had it back in January, but I don’t think it pays to even ask about that now. She doesn’t have all of the symptoms – thank goodness! But they have started palliative radiation on the brain and spine.

Stage IV breast cancer is frightening, but LC takes that fear up a notch.

I don’t want my mom to suffer. I would really like her cancer to go dormant, but that seems less and less likely.

How is your mom?

Simple question, right?

And I know the question is genuine and comes from a place of love and caring. But how do you answer it when answer is…. my mom is dying.

I am an honest person, and sometimes I am too literal. (I do NOT work in marketing.)

I am fighting my instinct to be honest, and give this wishy-washy answer instead: she is still fighting.

Which is an honest answer also because she hasn’t given up. Her oncologist is not recommending more chemo, and will not even consider it unless her platelet count nearly triples. But if mom really wants to do a round of chemo after she finishes radiation then the oncologist says she will agree to it.

I can’t even begin to put myself in mom’s shoes, but I selfishly do not want her sick from the effects of chemo during her last weeks.

How do you answer the question… how is <insert name of terminal loved one>?

Holley Kitchen

Holley is a woman from Texas who passed away in January 2016. She will always be remembered for this video, intended to educate people about metastatic disease. Please share.

4 / 8 / 2016

A Date Which Will Live in Infamy…for my family.

Today is the day we found out that mom might have about six months until her journey on earth is over.

The breast cancer journey started in September 2011, as a result of a lump found during a routine mammogram. The metastatic breast cancer diagnosis came in September 2014, after mom began having pain in her back. The cancer had come back in her spine.

The news on April 1, 2016 was that the disease has progressed, and spread to the meninges of the brain and spine. Radiation to the brain started on April 6.

This is a new blog for me. Intended to help me cope as well as document what I am afraid I won’t remember later.