Sometimes its easier to play things down. But honestly you don't know what's being played down til after the fact. I don't feel like I play things down, but a few friends say otherwise. I mostly like to talk in circles so only the dedicated ones hang on. Gotta weed out the fluff.
It's the "HOLIDAYS". There are a lot of social events during the "HOLIDAYS".
It's difficult on many levels. Energy wise. It takes planning. Usually I start to fizzle out after about 7:30. It used to be 8:30, then 8. Which on a day to day basis is sort of the time Phil gets home from work.
The social stuff. Absolutely draining. Part of it is the super shallow stupid stuff- like finding something to wear. Since being on steroids I've gained a lot of weight. And steroid weight gain is a fun thing- they call it moon face. Because your face explodes in chubby juiciness in every direction. And the belly roundness. Which is stupid right? I'm here- I'm alive and I feel horrible in my own skin. I don't know whats worse- the 3 year old telling me how fat I am repeatedly or the acquaintance tripping over themselves to tell me how good I look(please still tell me I look good- I appreciate it even if you are lying). I am reminded of my own damn posts about being present and being IN the pictures but when I see the pictures the PTSD sets in- the old familiar- someone is on high dose steroids for long enough- because well there is something wrong. I don't recognize the face looking back.
At my last treatment, surgery was plopped on the table. Now, it has been ON the table for months- I just keep batting it away. I don't want to die from a tumor. But let's face it- that is the trajectory I am on and have been on for YEARS. The treatment could kill me, the treatment could fail me and the result will be the same and really where is the blame? Does blame help? I also don't want to not be me. I watched my brother not be him. I watched my dad not be him. As my mom gently reminded me- had we caught their tumors early at the non symptomatic stage- we might have had more valuable time with them. I think of my so many dear friends with loved ones suffering from dementia or Alzheimer's and the years and years of added time with loved ones who bit by bit lose pieces of themselves. It is not an easy road. I don't want my kids to remember that. I don't want to be a burden. Surgery alone presents a burden of scheduling and help needed. This is not something we will be able to do without help.
Tomorrow we meet with the new neurosurgeon. My onc warned me. It's time for surgery. Everyone is in agreement, except me. As I wrap presents and drive kids to activities and try to go for walks(enjoyment is now limited by plantar fasciitis- heel pain due to aforementioned heinous weight gain) and make dinner and type, I think these are all things that will be put on hold. We will hope for the best. But I've had a series of friends go in for seemingly simple procedures that ended up with huge complications recently. Its a huge reminder of how big this is. I am tired. I've been on treatment for years. My body is not as strong as it was for other surgeries. It's overwhelming and quite frankly I can't think about it without crying and a bit of panic. Because I am just not ready. I am not ready to stop- the slowing down has been so beyond frustrating. I don't want to feel shitty for weeks on end and sleep away precious days. It could be fine. I don't want to rely on friends and family to take care of my kids and do all the things I do. I know there are so many happy to help. As I make mental notes of all the things I do that will have to be covered, I am alternately impressed and pissed. It's a lot.
If one more person mentions being merely here and alive for my kids is important I might have a throat punch waiting. Coordination or not - pre or post surgery- I will find you. If you have never loved someone who is no longer themselves- due to depression, anxiety, dementia, alzheimers, brain tumors or any condition that requires someone to have full time care- please do not presume to tell me what is important. You get to make your quality of life decisions and I mine. Yes I want to be here with all my heart and being. I want to BE here. I remember laying with Lily so sick, so many unknowns, wishing it were me instead. I wish it worked that way- I would gladly do all this and then some if there were any guarantees to protect them. I wish I could save them from the aches, the realities. So I lead by example I guess- I try and do what's best for us. And as my husband has been told before- yes I realize that we at less than 50% potential are probably still better than some of the blobs out there posing as humans. But we are us because well just cause you can slack doesn't mean you should. I will rise to the challenge. We will make the best decision. It just still sucks. I am feeling the suckiness of it more these days. It isn't easy sharing- but Phil is bearing the brunt of my negativity and that is not healthy for either one of us, as he is my biggest support.
So tomorrow, Thursday it is- decision time. We will meet, we will process, then we will plan. We will call in our reserves. Remember years ago when I said I'd save the asking for help for a time when we will need it. That time is coming. It makes me a bit nauseous actually so I have to go do something else right now. Tick Tock. Could be a bomb, could be a clock.
Messages for the Mallorys
8 years ago