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.’
Jen, you are amazingly strong, brave, and genuine for sharing your life with us! Please stay that way! Hope can be the best medicine! Love, Carrie
Thanks Carrie, I appreciate your kind words. I hope you are doing well and enjoying stability on your end as well!
Can I tell you that I think you are amazing? ((((((Big hugs))))))
Thank you Kristy, I appreciate your support and kind words.
I have written a comment and erased a few times because I do not have the right words nor do I even know what those are. So please let me just say, “thank you”. Thank you Kenner for being open and transparent and real and genuine and authentic. Thank you for letting us in to this private world and sharing it with us. Thank you. I do not understand. I am here and available for anything, anytime if there is something I could do for you, your family or any of my precious friends dealing with this Scanxiety and all the things that come with it. Thank you Kenner for all your words today because they are powerful and honest.
Keener, I’ve said before and I will say it again: We are HERE for you. Not just in the “it’s a nice thing to say, so I think I will say it” way, I mean in the “We are all hoping and praying REALLY hard that things stay stable, but if they don’t, you can count on us to help take care of the shitty details.” I’ve been thinking about this since I saw you and our discussion. Again, I say that I am YELLING at this god damn tumor to stay away, but if it doesn’t, you have a team of HYPER OCD organization freaks who are VERY good at logistics. Team Get Sh*t Done. Count on it.
*my point: you would NOT, for example, have to worry about how the kids get to school. We would find a way to get that done. Ok, so maybe it would be the Oscar Meyer Hot Dog Mobile or a clown car, but it would get taken care of. (We would also set up a separate pay pal account to fund all the therapy they would need from being driven to and from school in said vehicles, but let’s focus on one thing at a time…) Love you!!
One Day at Time has always worked for me. When my anxiety spirals out of control, I create a chart of possible outcomes and what life would look like in each. Ultimately, I often find that not much changes as long as I have friends that love me, and family that supports me. For some reason, looking at it on paper dispels the myth of “what might be” and makes it all seem a little less scary… sending you love and light to guide you.
Thank you for sharing and I appreciate the support Anonymous. We do our level best to operate on a One Day at A Time schedule too and we simply hope that we can stay on the stable side of the equation for as long as possible. Thank you.
Not anon – but January…
Ah! Thank you January!
God I’m hoping you get good news. That’s it. Keep your ‘electronic village’ in the loop….we worry.
Thank you Jennifer. I will certainly keep all of you in my electronic village in the loop and appreciate the support!
All I can say is that no matter what the outcome, we will be here to provide whatever support we can to you and your family and to celebrate when that is what is called for. I cant help but feel that my situation and our conversation this week has contributed to even more anxiety this time. I wish it were different but that is the reality of our situation. It is unbelievably challenging and overwhelming and we can only make it by taking it one day at a time. We will deal with ‘that’ Bell when it rings.
We will be praying that the piece of Shit is stable. God will know what we are talking about and wont be confused by our request.
Peter, Please know our conversation has not contributed to this at all. I am just finally putting out there what the process is like and what our thought process is. You support is amazing as is your friendship. Thank you.
I can’t even imagine the thoughts running through your head as these dates approach. Who on earth expects you to “calm down”? I can’t stand those sunshine-y folk. They mean well, but their words are not at all helpful.
Thinking about you and your piece of shit. Here’s to hoping he’s been beaten down by all the cuteness and love around you.
Thanks Tracy! Here’s hoping the Piece of Shit has been beaten down too!
Jen, I find myself at a loss for words and sending a huge hug your way.
I appreciate your comment Anonymous. That is saying plenty.
Wow…I am so sorry, Jen. I send you love, prayers, and positive energy….and just know you are in my thoughts as you (again) travel this incredibly difficult road.
Love to you Suzanne and we appreciate your love and support.
You so perfectly put into words how we feel every 3 months when my husband has a MRI. Thank you for sharing, being vulnerable and transparent. Prayers!
Thank you and I means a great deal to know you can identify with what I wrote. Prayers are with you too.