Wednesday, November 4, 2015


Well when you ask if your brain MRI report is in and your nurse pulls up the chair- your heart stops a little.

There is a small growth in the tumor in my cerebellum. About 1mm in each direction. Before radiation, it measured 18x14 mm. It shrank, stayed stable, Now it's around 11x13mm. I'm used to dealing with tumors in the cm range so millimeters is new for me. But then again we are talking about my brain so the less we have taking up residence there- the better.

My nurse shrugged and said eh- it could be the difference in one slice. My friend pointed out that it could be that we used a different machine. Either way, my onc looked it over and will discuss it with the radiation oncologist to see if we want to re-blast it now or wait and see. Regardless, we are going to wait and see what my PET scan reveals in 2 weeks. That way if we have other stuff to deal with we can make a well rounded plan. Phil tells me to hurry up and take our chemo selfie before I forget. We smile, because this is what we do. We could cry. I know I feel like it a lot, but I am going to focus on the positive. It wasn't stable as hoped, but it could be worse. We follow closely so we can keep on top of it. We go by how I feel .

I have been feeling pretty good. I am still running the kids around like crazy- not taking enough down time and actually sleeping. Phil's work is stressful and it's already taking a physical toll on him. Not that having a wife with stage IV cancer, 4 mutant children -2 with managed health conditions and general life was enough to do that already. But we are living the dream. Ok that was only partially sarcastic.

The Pentatonix released a version of Shai's If I Ever Fall in Love. It is one of "our" songs. The summer I was in Honduras- it was a huge part of my soundtrack.  I have these moments a lot that so much remind me of another time. The girls in the van, singing along to one of our songs- harmonizing- is enough to send me to a simpler time- a time when I was 16 and fearless in a third world country in Central America.  6 weeks made a huge impact on who I am. It gave me an appreciation for another culture, simple living(which is HARD WORK), cement floors,  windows, running water, not having to catch your dinner. It also taught me that experience isn't always a matter of length of time- but quality of time. I learned that watching my brother fight cancer and I knew that- but the lesson was always in the cancer context.  Being able to take lessons and apply them in completely different situations- this is where I learned a lot about me and how to cope. I observe people and I feel their feelings. In another life I might have been a great writer- capturing these observations in a great patchwork of fictional characters to tell stories and teach morals.

I am in several support groups and was recently chewed out for "blowing sunshine up people's ass" and also reprimanded at the same time for not believing in a cancer "cure". This of you who know me know- I don't blow sunshine- I don't kiss ass- I tell it how it is. If it is sunshiney well that's because it's sunshine.  I know that anger is a real emotion and those of us living with chronic conditions have a lot of it. It can overtake you if you let it. Some days I have to remind myself that today I am still busy and get to hug my kids and be there to tell them to stop being assholes to each other. Because humans are messy and they have LOTS of emotions. They are not always rational or pretty. The happy, fight, we can do it cancer advertising doesn't sit well with me. It's not happy, it's not pretty, and we can't always DO it. You know this if you've ever lost someone. To cancer, to drugs, to mental illness, to disease, to life. When someone says "I wanted it bad enough and so I fought and now I am in remission- you can too" It's a slap in the face to those of us who have lost loved ones. It just is. I know my brother wanted to win and I KNOW he fought hard. He did everything the medical community recommended. He still died. In any world where children die of diseases that nothing can be "done" for- well I refuse to believe there is a cure. To me cure means- gone-eradicated- no threat of returning. But then I look back at how much has changed from then until now. There is the hope of CURE. But mostly there is better CARE.

Anyone who has had a disease that has been "cured" could tell you there is ALWAYS the nagging worry that it MIGHT come back. See- to me- CURE means there should be no worry. With cancer, there are no guarantees. Having LFS means even if you knock out one cancer- there is a higher chance you will get another cancer- so cure is even more elusive.  I hope it doesn't seem jaded, I do have hope. Because there are no guarantees- it also means you do not have to adhere to the path of poor prognosis. You can just ignore that and chart your own path.  I also wonder if my somewhat dismal attitude towards "cure" is also the reason I am on this path.  Every day I look at Lily and think- she is the statistical anomaly. She is not supposed to be here. The yin and yang of it also means that if she is here,then the universe seeks balance. Many of you know that is a bargain I made with God/The Devil/who ever was listening as I snuggled my sick 3 year old over 7 years ago and prayed that the cancer leave her little body- I would do anything, ANYTHING to take it from her. But I am no different than any other mom in that situation and I have no more or less desire or power over that outcome than anyone else does.   I mean realistically- I know I have LFS- it was only a matter of time- BUT your mind and heart play tricks on you when faced with the impossible. They try to align in a way that you see- anything IS possible. There is ALWAYs a chance, there is always hope. Everything does happen for a reason. And if that phrase does not sit well for you- it is because you are in that hard dark place right now where none of it makes any sense and there could never be a good reason for any of it. But the reason is YOU.

Keep up the good fight. Well I have realigned the way I view it- and I view it as a dance, not a fight. Fighting implies a win/lose situation. But there are options. A bargain. Because although I made an agreement- the terms were vague.  There is cancer in my body but I need it to behave- sometimes it will require chemo assistance- sometimes it will be dormant on it's own. I respect that it wants to survive- after all- I want the same thing. I have an unhealthy roommate that I can't kick to the curb- so I have to learn how to keep her sedated. I can live with her- it's not ideal- but it can be done. The difference between cure and care is just one letter.

1 comment:

  1. I believe you are a great writer in THIS life...hugs to you :)


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)