Don’t tell us not to worry and don’t tell us it will be fine. Don’t tell us “you just know it will be ok” and don’t tell us not to stress out. Please don’t confuse our anxiety right now with desperation. Our anxiety appreciates your support over your pity.
We’ve been down this road, running this fucking MRI marathon, for more times than I can keep track of now. Counting them at this point only serves to give more teeth to the weighty beast on our shoulders.
So, yes, please ask questions. Yes, please tell us how you feel but don’t tell us what you think we want to hear. Be honest with us and be real. Tell us that you don’t know what to say and please, please, please, don’t tell us you understand unless you really do.
I have not been blunt with you. I have not been entirely honest with you. I have not come right out and told you what goes through our minds and what we re-live and re-examine every so many months, over and over again. We kept it to ourselves. Maybe some would have better understood if we had been more transparent.
Our nerves are frayed, anxiety is creeping in and I think it’s time to just lay it out and be blunt about what exactly this process looks like for us.
There are two scenarios. The one we have been blessed with so far, which is a stable piece of shit and the second which is that the piece of shit has grown. That it is a very naughty piece of shit that no amount of time spent in the time-out chair will fix.
There are so many variables with this second scenario that it’s nearly impossible to go into each scan with any semblance of clarity as to what and how we will respond if that bell is rung.
So, we are left to wonder…
How big? Where did it spread?
What will our options be? Will there be surgery first and then radiation? Will there just be radiation? Will there be chemo too?
How quickly will I have to begin all this?
Will I have seizures from the radiation treatments or surgery?
Will the anti-seizure meds make me feel as crappy as they did last time? How much will I be able to limit the steroid levels and how quickly will they let me wean off of them?
As vain as it may be, I wonder how much weight the steroids will cause me to gain. Will my face on steroids respond like a blow fish again and will my hair fall out from them as it did last time?
Will I be able to drive? Will the anti-seizure meds make me feel off-balance?
If I can’t drive, who will take my children to and from school? What friends will be able to help? How will we keep our children’s lives as intact and normal as they deserve them to be?
Who will help me with Harper if I can’t count on myself 100%?
Paul has to work. We need his income and we most certainly need access to health insurance. We need for him to return to work and be productive. We can’t afford, literally and figuratively, for our life to upend his professional livelihood.
We wonder if we would have to hire a nanny or an Au-Pair and we wonder how we would afford that. We wonder where we would house a nanny or Au-Pair if they had to live with us. We wonder if we would have to finish off our basement and we wonder how we would afford that too. We wonder if this need for help would be short-term or long-term. We wonder.
We wonder if after surgery I would come out the other side as strong as I am today. We wonder what OT and PT will be required. We wonder how long it will take us to re-discover and re-establish our normal. We cling onto hope and we cling onto reality. We wonder.
We process these thoughts among others every time we prepare for my MRI’s. It’s complicated and it’s overwhelming. It’s emotionally exhausting and it’s stressful. We may be accustom to it and it may be routine, but it’s nevertheless challenging. Our nerves are exposed and we are raw. This process will never get easier and we do not expect it to.
So, I hope you’ll understand as we respectfully say, please don’t tell us not to worry and don’t tell us it will be fine. Don’t tell us “you just know it will be ok” and don’t tell us not to stress out. It’s ok to feel uncomfortable and it is ok to not know what to say. It’s ok to be worried and it’s ok to feel stress with us. It’s ok to laugh and it’s ok to joke. It’s ok to be honest and it’s ok to open a dialogue.
Walk with us and engage in this experience with us with transparency and honesty about how this journey impacts all of us. We are stronger together than we are alone and our hearts and souls are stronger when we are honest and real. Nobody said that the best medicine tastes good or the best remedy is the most beautiful.
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’