What do we say to the god of death?

Not today. In case you're wondering, that's what we say - not today, according to George R.R. Martin and me lately. 

Over the summer I had the opportunity to meet up with a dear friend. Having experienced significant illness and challenges herself she asked me an interesting question. "Do you relate to the term "survivor" as it connects to cancer? Does that feel a bit militant to you?" At first, I didn't really know how to answer - mostly because I didn't yet see myself as a survivor. 

So, what am I waiting for? Someone's permission to be a survivor? Isn't the connotation of the word survivor connected to a struggle? Overcoming in a fight? 

It's taken a bit of time, a bit of processing, but I have an answer now. I'm a survivor, and I've embraced the fight. This cancer crept into my life, quietly, lethally and it damn well tried to kill me. So, yes, I fought back and continue to do so, against anxiety and fear, against seeing the future as dark and fearful. I look it straight in the eye and scream into the void. Not today! 

When it took me a day's worth of energy just to have a shower on my own, I fought by having one. 

When I was first diagnosed I walked around the hospital, but walking was nearly impossible.

I laughed, I visited with friends, I spent time with my kids, I went out with my husband. I fought for the life that was in danger of being stolen. 


I don't know what's going to happen, but make no mistake. I'm going to fight for life, for love, and for all that I hold dear - no matter what my results say. It's ok to fight, it's ok to be militant, and it's important to accept being a survivor. 

So, what do we say to the god of death? Not today. Not today. Not today. 

90 Days

My last set of test results were not what I wanted. They weren't bad results, thank God, just really not what I wanted. 

I'm not a great wait-er. I'm the one who goes and buys my kids Christmas gifts, and I can barely wait until Christmas to give them. I want to charge in the house with the Amazon boxes (God Bless Amazon), and let the kids rip into them right there. But - I know - then there would be nothing for Christmas, and Christmas is special - and the waiting is just as important as Christmas morning itself. 

So, when the Dr. said - the tumor has shrunk, but we still see activity and we'll have to wait three months to confirm what it is with another scan...my first thought was, hell. I'm going to be living in a special kind of cancer purgatory. The scan in 90 days can go two ways, one is for the tumor to either shrink further, or stay the same size.  If that's the case, I'm on Remission Road, and I can maybe start building a "new" normal - whatever that is, it will likely require counselling. But, if there is growth, we start what could be a long road that ultimately ends in further treatments, more waiting, several procedures, and a stark recognition that things are somewhat more serious. My Dr. did say to me that in the majority of the cases he has seen, the tumors usually don't grow. Which was nice of him to say - but I've found that things aren't necessarily easier. 

I'm about in the middle of the 90 days. So far it has been both better and worse than I expected. Some days I am a strong, hopeful survivor where nothing is going to get to me, and others I am quiet, serious, withdrawn and sad - searching for something, anything that will tell me, you're going to be alright. For example, there's a medical paper posted online that talks about PET scans, Deauville Scores, and SUVs. I've read it probably 172 times. Why? Because it gives me a bit of hope? Because I'm crazy? The jury's still out. 

So, what to do in the waiting? Well...I'm trying out a few things. I try to put the medical paper's down, try to put my phone away, and try to go out side to sit in the sunshine. I try to kiss my kids (when I can catch them), and give out hugs and treats as often as possible. I putter around, drive places and pretend that everything is "normal". I try to laugh and listen, to read and think. To cry when it comes, and accept joy as a part of the little things. To remember that the waiting is important, even when I can't control the outcome, when I don't know the outcome. 

To wait. To hope. Always to hope.

When Death Looks You Bang In The Eye

I'm in a strange place. I finished my six cycles of chemo in March, after which I had a PET scan and my Dr. told me I had a "complete response" - which I was later told is like going into remission. After that, I participated in an eight week drug trial. Tomorrow I will be having another PET scan, and hearing results on Wednesday. After that I'm...done? free? all of this on track to be a distant memory, yet I find myself conflicted, frightened, and a bit emotionally unstable. Weird right? 

Shouldn't I be celebrating finally being free of anything cancer related? Shouldn't I be eager to rush ahead and grab life and just forget it all? Yet, over the last 8 months, looking back, I find myself inextricably altered. My life will never be the same. Of course, there are positives...I look at life, and living without a disease holding me back, as so precious. I am overwhelmed by a sense that each moment really is something unique and important, something that I'll never get back, except tucked away as memory. I have to figure out how to harness it all, and it builds to an energy, an excitement for life, and a private vow that I will live differently, in love, generosity and grace.

But then, there is fear. Tucked away a constant niggling doubt. It's one that knows the statistics, the numbers, the odds, the chances. Being exposed to cancer, and people with cancer also exposes you to those whose treatment isn't successful. It looms as something that might "come back" in the future. It sprinkles a bit of grief into every happy moment, a choke in the back of the throat when something special happens, a sense of "unfair" in looking when seeing my chances being wrapped up in two years, five years, ten years. 

So, where am I? Well...it has occurred to me that there is no single one of us, whether the stats are obvious or not, that has a "future" beyond our next breath. It's sobering, gut wrenching, but...freeing also? I may not be able to escape these next words sounding like a cliche, but I need to live every moment. To not take things for granted. To treasure each moment by moment. To live in the light of life and death - this precious walk, step by step. 

Bald Faced Beauty

Do you want to know what my first thought was after it finally settled in that I had cancer? I said, (I hope not out loud, but I can't be sure) So, I'm going to be one of those women - those bald women, and the thought of it sank my stomach like a stone. Now, I'm not known in any way for my hair, but that mess of weird, fine, directionally challenged, daily exercise in frustration on my head was mine - and in my opinion it hid a multitude of flaws. It was almost like I feared losing my hair more than the cancer itself.

At first, knowing it would start coming out - I cut it and cried, then in anger I hacked off a bunch more, and when the inevitable fist fulls began pulling out I gritted my teeth, threw up my fist at the question "What is beauty?" and I shaved it off. That was several months ago now, and though it took a while, avoiding mirrors initially, then finally allowing myself to be surprised by my own reflection for days at a time - something strange has happened. I've come to the place where I don't mind my bald head (even if I still sometimes roll my eyes at it), and I can actually appreciate how my head helps cool me off, it's not a weird shape, I can laugh at myself when I have the automatic thought gee, it's been a while since you had a haircut and even in the right light it's kind of pretty.

So, what is beauty? Haha - I don't know. But I know that us bald headed girls are strong, that we don't let a roomful of perfect hair pull us over with envy, that we can be generous in the face of the awkward overwhelming compassion that comes in the eyes of our sisters with hair, and that we can define a place in society, in love and in beauty that means something more, something just a bit deeper.

What Makes Brave?

When I was little, one of our favorite things to do was watch movies. Old, new, it didn't matter - and my favorite, of course, were the heroes. The characters facing all manner of trials, who had to be brave and strong and who would inevitably overcome whatever it was they were facing - and emerge triumphant by the time the credits had a chance to roll. I thought I had a pretty good idea of what classified people as "brave," an individual who looked terror, anger, injustice in the face, and with a certainty felt to their core, were able to be triumphant. 

Bravery though, seems to be a little more elusive. I've often thought before that people going through difficult circumstances must also magically become brave, and maybe they do - but the reality is, I've found that I have not. It's more the case that given any other option than face it, the Lymphoma, the chemo, the sick days, and on and on, make no mistake - I likely would have chosen anything else. 

So, what is bravery? Is it acceptance? Perhaps. Day by day I accept a little more of where I am, and what I'm going through and it gives me hope that I will be able to see things through to a good place. 

Is it circumstantial? Definitely. Though when I think back on all the moments in my life that required bravery, all were situations that really had only one way out, and the type of bravery required was very situation specific. Under the knife in the delivery room, standing up for what I thought was right - and losing my job, being a Mama, and now cancer are only a few examples. But, in each one there isn't an "out", there isn't an easier path, the only way through it is to look it bang in the eye. 

Is it "living it" scared? That may well be. I can attest to the truth there. Lymphoma is known to have good outcomes...and I'm still afraid. In that fear I have no choice but to move forward. To trust that God holds my outcome, my life - beginning and end, no matter what the doctors say. That today, tomorrow, and the future don't belong to me - but to God's good purposes.     

Is it defined by the people around me? Yes. It's here I know for certain where bravery lives and breathes and is grown. It's in the hugs, and the shared tears, the text messages and cards, the phone calls and the emails. It's people reminding me, "you're strong", "you're brave", and "I'm praying for you" that really, truly tip the balance in the favor of brave. 

So, thank you. All of you.

You make me brave. 

Everyday Miracles

Miracles don't always look like we expect them to look. Of course, I'm not going to stand here and claim that God doesn't send instant, life changing miracles our way - because I would be flooded with examples otherwise, but I think more my argument is - that God is really working miracles all the time, well before we know that we need them - sending them in ways we don't expect.

For example - During chemo I am given a drug called Doxorubicin. Contained in this drug is organic material, a bacteria that is found predominately in soil and decaying vegetation and is delivered using plant virus nano particles. This creates a part of my chemotherapy regimen, is bright red, and is administered by a carefully trained nurse, by hand. The reason it is administered in this way is for my protection. The nurse was telling Brad and I on Friday that if this particular chemical in any way spilled onto my skin, or into surrounding tissues, not only would it immediately kill those tissues but, before it did, would transfer to other cells and kill those as well making it very difficult to stop. The nurse ensures that this drug is administered to my vein only - where it does not kill the vein cells but instead finds and kills the cancer cells.

As I was listening to my nurse describe this process, I was absolutely blown away. It is a MIRACLE. Somewhere along the line, whether this person recognized it or not, I believe that God gave them the idea, ability and smarts in order to not only understand how all of these complicated processes work, but also to get them to work not only on my behalf, but for any person who has lymphoma, effectively working to save lives. Yet, I think - me, and in particular people of faith - tend to get discouraged when we don't "get" a miracle that looks like we think it should look.

Have I prayed for God to heal this lymphoma immediately? Of course. So far though, it hasn't happened like that. In response God said - trust me. Follow me. Let me lead you step by step. It is that image of me taking his hand, and letting him lead me that has informed me in my decisions to work exclusively with the information and recommendations of my Oncologist. In essence God has put Dr. Chua and his team in my life to work as healers. To me this is no less miraculous than God working an immediate miracle in my body. In that, the journey becomes all the more precious. God is still, my strength, my comfort, my song, and my healer - but I get to walk with people, build relationships with people, and ultimately face some fears in my life.

I never took the time to imagine a cancer chemo infusion room. That was far too terrifying for me. But, what I have found is nothing short of the presence of a loving savior walking amongst the chairs and beds in that room. Each time, I see people in all stages of cancer, I was scared that the chemo room would be a place of desperation and sadness, and though it sometimes is - instead I have found a place of light, positivity and hope. A collective of people banded together to fight the same evil disease bravely, with laughter, joy, peace, questions and generosity. A deep concern not for strangers, but for fellow humanity walking the same steps, fighting the same fight. A place where love and life, fear and death all culminate, and as each cancer warrior faces it head on, a place where miracles happen each and every day, and the enduring hope that a miracle will happen for each person there.

For my scientific friends - please forgive my clunky explanation of Doxorubicin. For sources and more info: 

- https://www.ncbi.nlm.nih.gov/pubmed/28952882
- https://en.wikipedia.org/wiki/Streptomyces
- https://en.wikipedia.org/wiki/Doxorubicin#Biosynthesis

Someone To Blame...

Have you ever wanted to blame someone for something? To say - the reason I am going through all this pain and agony is because of YOU, or even ME. At least I can point the finger, narrow it down and say THIS, this is what caused all of this and now i'm going to avoid it. 

Just recently I have met a young lady who miraculously has gone through exactly what I am going through right now. It's a blessing for a few reasons, the first because 10 in 100,000 people in my age category are diagnosed with this disease every year. Second because she loves Jesus too, and not only does she get exactly what I'm going through, but she asks really good questions, and makes strong points. 

We were talking about the temptation to blame. The temptation to demand an answer to WHY? Especially why ME? When I'm sitting, and reflecting I can't help but thinking - ok, if there is this huge mass on my chest of cancer how did I not notice? The inevitable answer comes back with hindsight being 20/20. I hear something like you knew. You saw the strange signs, and symptoms. You were just scared to deal with it. Maybe that's true. Can I list my symptoms? Yes, but so can any website talking about Lymphoma. In all honesty - I was feeling off, I thought I had a cold which was affecting my ability to swallow, and something weird going on with the lymph nodes in my thigh - but my doctor assured me they were nothing to be concerned about. So, I can't really blame myself - can I blame someone else? 

I suppose I could blame my doctor, or even both doctors I saw before I was diagnosed who brushed off the symptoms as something less - but it's not really their fault either. I tend to be a hypochondriac, my doctor's first instinct with me is always "calm down Jana"  and she's usually right. 

I could look to blame something I ate, or something I didn't eat. I could blame not getting enough exercise, or maybe getting too much. I could blame my job for being stressful, for relationships that over the past year have fallen apart, failures I've had in dealing with my kids, my sometimes crushing awkwardness in social situations, my quick bite and lashing out in anger in the privacy of my van. Sure - I suppose it could be any of those things - or none of them.

I mean at least we can look at a heavy smoker with lung cancer and say really clever, helpful things like "Well what did you expect?" I mean, that always makes US feel better, or safe or something. 

If I can't find something to blame for this cancer - what am I going to point others toward blaming? 

So, when I'm out and I've forgotten that my hair is gone, and when someone stares at me with a mixture of horror and painful compassion I can almost hear what they are thinking...

"Dear God, what did she do to end up where she is??" I know - I'm not claiming I'm clairvoyant - it's what I was arrogant enough to think to myself. It's then I realize I'm not so different...

And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind? Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him while it is day; night is coming, when no one can work. As long as I am in the world, I am the light of the world. Having said these things; he spit on the ground and made mud with the saliva. Then he anointed ht man’s eyes with mud and said to him, “Go, wash in the pool of Siloam.” (Which means sent). So he went and washed and came back seeing.”

John 9: 2 – 8

There it is. There's nothing to blame, no one to blame - not even me. There's no silver bullet, there's no quick cure. This is just the journey my feet are walking, and the very best part is, I'm not alone. I can walk, my hand in the very hand of God (though sometimes I feel like I'm just hanging on to his robes from behind) and trust him to lead me. Past, present and in to the future. To take off blame, and leave it where it is. There's no point taking it with me.