Friday, August 12, 2016


I've had this post in draft mode for a long time because I'm not sure if I wanted to tell this story. It is not one I really want to participate in but I have no choice in the matter. I have always found writing about my life cathartic. Perhaps it helps me make peace with the world around me or perhaps it just allows me to make sense of things. With this story in particular, I hope it will help me get through the grief process in a way that is healthy for me. Fortunately, I hope to have a number of years to write all of it.

In short, my mom has brain cancer and although treatable, it isn't curable. But let me go back to the beginning first.

My mom was at home working when she began experiencing stroke-like symptoms. Having been a former Medical First Responder, she knew the signs immediately and went to get my father working outside. Having had a SCAD heart attack history, it wasn't outside the realm of possibility even if the doctors have said that her internal veins are in pristine condition for someone her age. My dad took her to the closest hospital about 30 miles away and they soon gave her a clot buster as routine stroke medicine and arranged for her to be life flighted to the nearest trauma center another 100 miles down the road.

The weather conditions were horrible and so a helicopter couldn't go safely and she was put in an ambulance instead. She made it another 30 miles down the road and had a full blown seizure. One of the side effects of getting a clot buster which thins out bloods is getting brain bleeds and everyone thought that this is what had happened but when they stopped at the next hospital along the way for a MRI, she was cleared. She continued on eventually to the regional trauma center where I met her having recently arrived from  my aborted vacation.

I was much relieved to find my mom in the ER with four working limbs and talking although in a slightly slurred voice. The next two days would be full of tests for my mom and conferences with the doctors before she was told that she didn't have a stroke and instead had a mass in her head that had caused the stroke-like symptoms and the seizure. All the tests showed that it was either benign or a low grade tumor that could easily be dealt with. Fully recovered from the incident that started this whole affair, she stayed in the hospital an extra couple days while they got all these tests ordered just to speed things up and sent her home for a week before they would open her head up and do a biopsy.

A week later, my mom returned for her biopsy and after over five hours in the operating room, the doctors told us that they had removed all the mass that they could see. What? It went from getting a sample to removing the entire thing but I guess none of us (except my wife) worried about it. The doctors still said it looked low grade and was really slow growing. They told her it was most likely Diffuse Astrocytoma but they wouldn't know for sure until the results of the biopsy came back in a week to ten days.

Only when I got home and googled diffuse astrocytoma did I fully understand the gravity of the situation. The key word in the diagnosis is diffuse which means that like water, the cancer seeps into healthy tissues in the brain and has no clear boundaries. So while they removed most of the mass, they definitely couldn't get it all as they led us to believe. It also meant that it would keep coming back and eventually turn into a high grade or aggressively growing cancer and kill her. Although it varies greatly between patients and a multitude of factors, on average, people diagnosed with diffuse astrocytoma lived 7 to 10 years. What they mean in my language, is 50% of the people diagnosed with it will die in 7 to 10 years. Reading deeper, only 25% will live to see another 15 years.

It hit me that my mom was mortal and that most likely, she would no longer die of old age as I fully expected, as we all probably expect of our parents. My mom wouldn't live to reach the average life expectancy for a woman living in the heartland of America, but she would get within spitting distance and I guess I clutched to that as hope.

It was my understanding that the tests results we were waiting on were merely tests to see how the mass responded to various possible treatments that would help preserve my mom's quality of life as long as possible which we still thought was a long way away. So I wasn't expecting when I downloaded the report for my mom who was without internet at the time, to find that they had upgraded it from type II diffuse to type III anaplastic astrocytoma. From my previous research, I knew that anaplastic meant is was a high grade or aggressively growing cancer.

My wife and I drove down to the farm that night to break the news to my parents and it was perhaps one of the hardest drives down there I have ever had to do. I didn't have to break the news but I wanted to my mom to hear it from family and not from a doctor she has only met a few minutes after her brain surgery. We all had a good cry and promised that would be the last but I know it won't be.

As I said before, the prognosis for someone with brain cancer depends on so many things. In my mom's case, the caught it early, caught it still small sized and removed almost all of it, all things that help. However, age is against her though as an avid health nut who bicycles across the country regularly for fun, I'm guessing her body age is much younger than that of her driver's license. Also, the field of cancer is undergoing such a revolution, that even studies on longevity five years old are way out of date. Saying that, on average for someone with anaplastic astrocytoma, 50% will die within 2 to 3 years and only 25% will live to see 5 years. Statistics that I'm not sure I really can cope with these numbers just yet. I don't know if my mom knows any of this yet but she has been told by her regular doctor that this will absolutely eventually kill her.

So that's my story thus far. It takes six weeks for a brain to heal from surgery so my mom isn't eligible for treatment until the end of this month. She will meet with an oncologist at that time who might be able to give her a better time frame on life and also discuss treatment options. Treatments really don't improve your time frame for living but do increase your time frame for being symptom free, i.e. having quality of life. I do know though that every second I spend with my mom now is the most precious thing to me and I plan to take advantage of that.


Vince said...

Oh you have my sympathy Ed. And your Mom my best wishes.

ErinFromIowa said...

This is very sad. Your mom has a good support system with all of you. Sending positive thoughts. <3

kymber said...

i'm so sorry to read this, Ed. we'll be keeping your mom, you and your family in our prayers.

sending much, much love! your friend,

Bob said...

So sorry, Ed. I know you read a lot of non-fiction and I would commend for your reading a book called "Being Mortal." It's written by a doc and it's about end-of-life issues w the elderly, infirm and terminally ill. It's extremely well written, enlightening and educational.

I have lost both of my parents and I think of them every day. My mother had cancer and my dad simply closed his eyes one day.

Don't hesitate to cry when you feel like it. It's an emotion we are created with and there's a reason for it.

Thoughts and prayers are with you and your family.

kymber said...

+1,000 to Bob on his book recommendation and for the crying recommendation. also - start thinking now about how you will allow yourself to grieve. and remember, you have your family and friends for support...but you also have a bunch of blogging buddies. much love Ed.

Ed said...

Thanks everyone for the prayers and good thoughts. Like I said, I am mainly writing this to have a record that I can reflect upon and perhaps use it in the grief process. I still have my moments but fortunately, time is still on our side. It has also been a kick in the pants to gets some real bonding done with my mom these last handful of weeks. I have a couple more posts on this already written and I'm sure I will write more as time progresses. It helps me tremendously to be able to write these things down and it doesn't hurt to have a few friends out there also on my side.

Bob - Thanks for the book recommendation. I actually read that book not too long ago and watched the documentary based upon the book a year ago or so. When we found out all this dreadful news, I went out and purchased a copy that I've given to my mom to read. It is an excellent book and I will talk more about it in the next post.

Kelly said...

I am truly sorry, Ed, and will pray for your mom and all your family.

Death is never easy at any time. I lost both of my parents to cancer many years ago, but my sister's death in February still has me feeling very raw and emotional. As for crying - whatever works best for you. I haven't cried about anything in years, but I know something will happen at some point and the dam will break open. It's never a sign of weakness.

Another book you might want to take a look at is 'Chasing Daylight' by Eugene O'Kelly. I reviewed it on my blog in March of last year, if you want to get an idea of what it's about. Its timeliness for your situation might or might not appeal to you.

Ed said...

Kelly - Thanks for the suggestion. I checked it out and ended up ordering. I should have it shortly.

Leigh said...

Oh Ed, what devastating news. I'm so sorry. It's a blessing you are close by. I don't live near my parents, which makes illnesses more worrisome. I know I don't need to tell you to cherish every moment.