Meh

So after my last post I got a lot of messages and texts checking in. My post was very representative of the place I was (am) in and I remain committed to trying to keep this process more transparent for the sake of global education.

Also, I like to whine to a lot of people at once.

As the weekend has passed and I’ve watched Andy just get stronger and stronger each day, the acute sense of anxiety has passed. I’m still so, so deep in planning. There are so many plates I’m spinning and I’m just tired all the time. When people are taking care of Ronan for me, I find I have little energy for more than just scrolling Facebook. I’m not ashamed to say I rely heavily on long drives with the kiddo in the car seat so I can get a break from the pressure of the house, which has so many things that need to be addressed and is in a new state of upheaval.

Our bathroom is really hard for me to walk into.

We had to remove a bunch of things from shelves because toddler. But now we have new shelves that house stoma supplies and are at a good height for emptying a stoma bag. The wedge pillow for Andy lives on the couch and the leftover dishes from delivered dinners linger.

I’m reminded everywhere of the state of deep transition we are in.

I’m trying to do a lot right now.

I’m still trying to secure clients, apply to jobs, write regularly for our family, communicate with everyone, update calendars, track all the pieces, and still do some self-care. I get angry and sad when I think about how much more of this we have ahead of ourselves and how I desperately need a self-care routine to solidify and actually work.

I added exercise back into the mix. We went to the YMCA yesterday and I did a really straightforward 30 minutes on the elliptical. Nothing fancy, just pushed myself cardiovascularly so I can start to get my endurance back. I think we’ll go tomorrow morning so I can lift some weights. My arms are still like steel cords thanks to baby bench presses, but I can feel my back and core and pelvic floor slackening as even long walks have become difficult to work in.

I’m inundated with the sheer number of people who are constantly asking me questions. Some of them are good like, “Can I include olives in the meal I’m delivering next week?” Good question. (The answer is yes.)

But  have like 3 too many people asking for personalized updates that I just don’t have the bandwidth for right now. As I told Andy, a surprising number of people feel entitled to these sorts of updates. I appreciate the notes of encouragement, the cards in the mail, the texts that say “I’m thinking of you,” but I just can’t tell this story one more time to one more person when I have several outlets to collect this information.

Let’s face it, I’m tired.

I’m anxious about my ability to keep up with everything if I should eventually be a single parent. I’m doing research and asking questions about how to set us up for that (“us” includes Andy who is rightfully worried about it). Some people have told me not to think like that. SOME PEOPLE.

It relieves me to know that if I need house projects done that I have friends who have already committed to it. It relieves me to know that Andy is writing a house calendar for me of all the things he does around the house to keep it functional so I can follow it if he’s not around to direct that work. It relives me to know who exactly has my back right now, even if it all changes.

It abates my anxiety to do this ultimate Willhelm Planning. This whole supporting a family through the hard times is a contact sport. This is why we asked those present at our wedding to take a vow themselves to support us in times like this. Though I had always envisioned our marriage being tested because of boredom or something, not through an illness this serious.

His mortality scares me. Andy was always invincible to me. I knew that someday I would live without him, but I didn’t expect to have to reckon with that for another 20 years at least. We know so little at this point about what we can expect with regard to that, but the idea of being a widow in my 30s, losing My Person when we are just getting going…it’s unfair that we have to do this.

And yet, I think about moms who have to do this when they are sick themselves with kids and no family. Or people who go through this with literally no one. We are so lucky to be as supported and resourced as we are.

And yet, I don’t care. I want the guarantee that I (and Ronan) have more time with him.

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Will someone clean up this word vomit please?

You know most Thanksgivings I can come up with a substantial list of things I am grateful for. Everyday I can come up with at least 10. I live a pretty beautiful life.

But yesterday I was incapable of looking for things I am grateful for. Yesterday I was mad and scared and sad. Everyday I go through many cycles of grief. I come around to acceptance several times until I am faced with yet a new reality of this whole situation that requires a new cycle of grief.

Some examples:

Listening to Moana in the morning and thinking back on our trip to Maui in 2015 and how we likely won’t be able to explore all the Hawaiian islands together.

Watching Ronan dance to Moana and wondering if there will be a point where I won’t be able to listen to the music, not because my toddler has worn it out, but because of the other thing.

Watching Andy hold his niece at dinner, seeing how her beautiful red plaid taffeta dress spreads over his lap and thinking how, despite feeling like we achieved perfection the first time around and won’t have another kid, he will likely never be a father to a daughter. Or father in law to a daughter in law (or son in law).

How many more Thanksgivings do we have? I have a part of me that thinks someone has this answer, but isn’t giving it to me.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

The grief is triggering. I spend most of the day managing my anxiety about abandonment, unsteady attachment figures, a need to be more competent, more intelligent, more charming to get what I want, which is my husband whole, healthy, happy.

But, my full planner and overworked to do lists are not good coping mechanisms. In this time, I think I need coping mechanisms that balance the need to be ordered and the need to feel. I feel like I’m spinning 12 plates at once, but what I really need is a good workout or an orgasm.

Also, I need people to stop suggesting more things for me to do. I’m not going to seek out more doctors right now. I’m not going to suggest Andy try on essential oils or new diet. I do not want your suggestions unless you are someone who deals with cancer patients or have been part of the inner circle of someone battling cancer. Stop projecting your shit onto me.

I also need coffee shops to stop playing moody music. And I need a little break from movies where people who love each other lose each other.

I definitely would not be able to watch the opening scene of Up right now.

This time reminds me of when I was a new mom and I lacked the words to adequately describe just how fucking hard it was. Except now instead of balancing the feelings and work of welcoming a very wanted family member into the fold, we are trying to figure out how to keep one who is already in the family happy and healthy.

Health is so fickle, right? I hear a lot of language about how if people are just trying to be healthy then they can be whatever size they want and that’s the price of admission to being part of our society. But Andy went from presenting the healthiest he’s felt in the last 15 years to fucking Stage IV cancer. If that doesn’t highlight the reason why heath-ism is bullshit, I don’t know what will.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Also, I’ve lost God.

I mean, we were never really tight to begin with. I sort of believed in the Universe or a collective unconscious. Last year I started playing with the idea of reclaiming some version of a Christian God.

Now, I can’t reconcile a lot of the language Christian religions use to describe God and God’s role in everything with what is happening.

Did God give Andy cancer? Does God really think we need to be tested this way? Are we less blessed because of this? Were we blessed to begin with? What is achieved by shortening Andy’s already shortened lifespan? How does this help me or Ronan or any of the other people who are clearly deeply affected by this?

God works in mysterious ways.

He sounds vindictive to me if this is how he chooses to be mysterious. Like the coworker who keeps using your half and half you’ve clearly labelled in the fridge as yours.

What if he’s the variety of God who stopped meddling? What if this is just a product of what he put into motion early on and we have to live with the outcomes? Then praying seems useless.

I’ve stopped praying. To a God anyway. I will sometimes have parts of me who will need to say out loud, “Please just let this all be ok.” I recognize these are parts of me who are young children afraid of losing the most protective, loving person they have had in their lives.

I don’t feel reliable. To myself, to my husband, to my son. If this all blows up, can I keep it together? I’m barely keeping it together. People keep commenting on how we seem to be handling this well. For sure I can present a version of myself that needs to be informative and accurate. I’m aware that there are over two hundred other people in the world watching all of this go down. (I didn’t even realize I knew that many people.)

I am aware of how many people want a silver lining in this.

Is it wrong if I can’t find a silver lining? I can’t find hope right now. I think in the whole large arc of the grief, I’m in Depression right now. (Denial, Anger, Bargaining, Depression, Acceptance–not necessarily in that order or with finality in any of the stages. Grief is not linear. Acceptance is not permanent.)

Ok, enough of this for now.

 

Just some thoughts I’ve been having

To say a lot has happened since my last post would be a serious understatement. Right now we’re 2 days out from a very sudden surgery for my husband, which is part of the treatment he is now receiving for colorectal cancer. The news, meeting doctors, coming up with a plan, arranging the surgery, all came on very fast. You can read about it on our CaringBridge site, but basically from first blush to surgery scheduled was all of 3 weeks.

Now I am sitting in my office, overwhelmed with things to do. But actually there is nothing to do. I have done everything I need to do in reality. My son’s care is accounted for for the next week, I have a lengthy list of caretakers if something happens to one of them, meals are planned and ready to go, all the final bills and mail and chores that have to get done are done. Now we are just waiting.

I am reminded that when I was in high school I had a habit of writing in all my homework very diligently in my planner. I was in an intensive international baccalaureate program and there was a lot of homework always. The closest TV experience to the one I had was Rory in Gilmore Girls. Except instead of writing for a paper, it was singing in my school chorus and every elite chorus I could audition for.

At the same time, my dad was at rock bottom in his journey with alcoholism so I spent a lot of time alone in my room, trying to deal with all the feelings of school pressure and my family being a source of constant, overwhelming tension.

To cope, I would write and rewrite to do lists and spend time looking in my planner at all the things I had to do without actually doing any of it. It’s like the act of making lists would soothe the part of me that couldn’t handle all the disorganization.

I’m feeling that very intensely these days. I write the same to do list in 4 places, often adding and removing things that have nothing to do with what is happening. Or creating lists upon lists that don’t really need to be figured out yet.

I feel the need to write in my journal when there’s really nothing else to say. I stare at blank pages thinking something has to come out because I feel such pressure right now, but I’m just tapped out.

But also, I’m not sleeping well. I’m exhausted every day, but I wake up early and find that I have to lay down partway through the day while my son naps just so I won’t get a migraine. I’m constantly on the verge of a migraine, which is kind of unacceptable right now.

People are worried about me in a way that feels equivalent to the way they are worried about Andy and that is a problem. I get worried that somehow I am coming across as weak, in need of help, unable to cope. Do these people who are worried about me think I need more help because I am not handling this well?

They likely see that care taking a sick person is a difficulty in and of itself, but I feel remarkably selfish being the center of this kind of attention when it is my husband who is ultimately dealing with the mutilation of his body and the lost time with his son. He’s on a lifting restriction for 6 weeks after the surgery and I just can’t imagine my life where I can’t hold my son. I’m trying to brainstorm ways to make this easier for Andy, but I’m stuck.

And then I get mad. I’m mad at the fucking cancer. I’m mad at a healthcare system that doesn’t just support people in these times. (Btw, in the middle of all this we got the notice for the premium increase for mine and Ronan’s health insurance. It went up 50% for 2018. What the hell are we even doing anymore?) I’m mad that we had a moment of gratitude that this was happening at the end of the year and his out of pocket max had already been reached, so we’re effectively getting free surgery. I’m mad that instead of spending time with him and Ronan, I’m freaking out about money. Andy will be missing a huge tech so the normal pay bump we get during the time won’t be happening. We have a GoFundMe to cover some of those expenses, but I’m pissed that I live in the richest country in the world and have to worry about paying our mortgage.

I’m mad that out of all the things I can do, all the skills I can offer, all the experiences I have, I can’t seem to make this less uncomfortable. Andy will still have to have major abdominal surgery. Ronan still won’t be able to be picked up by his Papa for over a month, and I still have to hold all the strings together when I don’t feel remotely qualified or prepared for this. (False, says a voice in me, you are the most qualified and prepared for this.)

When the surgeon gave us a worst case scenario of the cancer having already spread and said that the cancer might be “incurable” and it “would be more about prolonging your life,” I almost died right in that moment. The blood all rushed to my head and I felt the room spin.

How can I have found this man who loves me so much, a man who I could spend almost every waking moment with and not get tired of him, a man who makes me feel special and loved and appreciated and beautiful in all the ways that matter, and have him ultimately taken from me in this way?

We have a long way to go before we know if this is even a thing, but I’m already mourning his loss. I watch him at night when he turns away from me to turn off the light before bed and think, how will I survive without him? I don’t want to be a single mom. I don’t want to have this giant bed all to myself. I don’t want another person, I want him.

And then I bargain. Right? Because there is always bargaining. What do I have to do? If I keep all the details perfect, will it go away? If I promise to stay on top of the housework and find a job and stop running my own business, will this be the magical equation the universe needs to keep him alive?

And we aren’t even sure if this is the thing yet. But I’m already going through the 5 stages of grief with this.

And now I’m back to thinking how selfish I am that I even have grief over this. I’m not the one with the cancer. How can I think of myself at a time like this? How? How? How?

…just some thoughts I’ve been having.