Not Ok. Waiting for Rebirth of OK.

On the scale of fine to not ok. NOT OK. 

Not REMOTELY OK.

I KNOW NO ONE IS OK right now. 

It doesn't help to compare, compete, or criticize in this stage of the quarantine. or cancering. or living.

Medical long story short: Still getting some sort of treatment every Wednesday. Joint pain getting worse, shortness of breath, GI issues, mouth sore still hasn't healed. My onc retired and we are breaking in a new onc- who so far has gotten the memo on the complicated high maintenance patient I am. We've dose reduced abraxane and avastin again, I have appointments with rheumatology, GI, oral something, and working our way up to scoping of invasive kinds to figure something/ anything out- which I will do only when I feel the environment is safe and my body has some ability to heal. I'm fatigued, chemo brainy and shakey. Not my best advocate right now and a shitty time not to be able to have my best advocate with me. My memory is mom brain meets chemo brain meets over tired on crack. I just keep telling myself- it's not a toomah. hopefully. I am so grateful for the help I had getting through the really rough past 6 months. From friends' care pre quarantine, during quarantine- to smiling faces singing outside from the sidewalk to driveby waves and dinner drop offs. I got so excited to see my friend Angel at Tripler- I ran( and by run I mean waddle weirdly) up to her and hugged her. The look of shock on her face was precious- both of us always worried about the other more. My sweet Ano looked so much better. I look forward to hugging Alyssa on chemo days- she gets the kids out of the house and makes sure things are picked up and has soup waiting. I never feel like talking, yet somehow our visits are now one of my favorite lifelines. 

When both cars decide to give you grief. 

Stream of conscious update inspired by Digable Planets: Rebirth of Slick (Cool like dat.)

So I get up each day, stretch out the kinks, grab a coffee and banana sit out back and take the must take first meds. By the end of the coffee- Phil is ready for work- one of the many things I am grateful for despite it making life stressful- life without income housing and healthcare right now would be more stressful. Quarantine just be like dat.

My morning view.

He cooks me an egg for round 2 of meds and on cool days I stay out side until med dose 3- watering plants-which is to say trying to save them from imminent death which honestly feels kinda like ALL I do these days: try to stave off death of all sorts. Sometimes he eats with me, sometimes he takes Dobby for a walk, sometimes he has to go right into work. We like to keep it cool like dat.

After work, work call.

I head inside to my corner in my room- a view of the rooftops and sky, Dobby tucked next to my left thigh. Sometimes I digital Scrapbook, write out cards, catch up with nonprofit stuff, text friends, or stare at the wall and cry. I don't know why I sit and cry, perhaps I'll die. I like to keep it quarantine like dat. 

You wanna sit here?

Phillip is at home, not working, not schooling, just quarantining. We send him on errands, he drives us around. None of which he ever wanted

One of our drives.

We love him to death. He's smart and kind and will figure it out. In a world of hate and idiocy, intelligence and kindness are qualities we value. I want him to find happiness, which is in very short supply right now. We talk in bits, he helps run errands and sometimes cooks. He still works out- making those gains. There are talks of his going back to work, we balance the benefits and risks to our health. So we wait and guide and hope and don't talk about it in polite society, because well we don't go out in polite society in quarantine like dat.

Kiera after months alone in a dorm, rocked her way through her first year of college in Denver. I am beyond proud of her independence and remember acutely feeling the need to be independent. We are grateful to so many kind friends who kept in touch and brightened not only her birthday in isolation, but so many days! I remember overscheduling(what me?) and see her doing it and am so grateful she knows when to call in help and my mom is only a short way away. She made her way to Ohio and is staying with my cousin who graciously and fearlessly adopted our hospitality major for the summer and can put her to work at her hotel. Family rolls quarantine like dat.

excuse crappy editing...

Lily finished school and bounced right into summer school- ironically enough PE. Which is lead by a morning person, so 8 am is pretty lively. If I am near her room, the only thing that comes to mind is:what is that zumba? She spends most of her time painting gifts for friends and art to sell for St. Baldrick's which will be in September. She has some beautiful pieces. She also is my favorite at home nurse. She has the best hugs and I need them a lot. She keeps me fed and watered and medicated and tissued. She has this great menu she prepares weekly for Phil's Costco runs and we try to divvy up who cooks. Lily is just da quarantine bomb like dat.

Look out Bob Ross.

Bella started a Save Gary the Fish campaign in April. She squeezes in minecraft, playing piano, odd musical instruments and summer school Algebra prep in between nursing him. We've also learned Bella likes to help me in the yard- seems like we are matched in the trying to keep things alive area. Gary is a red betta fish that was returned to our local pet shop. I think she and Phil misinterpreted my disenfranchisement with Amazon - we need to shop local more- declaration to heart. Gary the fish has issues, so he fits right in here. By week two we were trying to figure out dropsy and fin rot in his tropical SpongeBob habitat. He was obsessed with bubbles- bubbles bubbles my bubbles. He actually interacts with us. I knew we were fooked. So round 4 or 5 of Gary side up, really gray around the gills- we discussed palliative care or possibly hospice. We made funeral arrangements- Gary will be given a backyard viking funeral involving a kid pool, some sort of fire flinging and a popsicle stick raft.  We switched things up. Meaning Phil upgraded the living situation. Gary made a remarkable recovery, until this morning. Much panic, fear, tears. He's hanging in, but my friends it doesn't look good. But then then again he may not. Bella won't let Gary go down in quarantine like dat. 

Gary's inpatient room. 

I've gotten quite a few messages asking how Phil is handling "things". In my mode of not comparing, competing or criticizing, I simply explain- as a privileged white woman, I don't feel qualified to weigh in on the absurdity of the hate in a time like this, that like much of the US and World,

he is struggling. He is struggling to make sense of the senseless. He is feeling intense sadness, grief over the events happening. He spends a lot of time explaining or trying to civilly point out the blind spots and that phrases like 'separate but equal'  should not be used jokingly or otherwise in today's society.  He spends a lot of time guiding, leading others to make the right choice only to feel helpless when it does not seem to impact the outcome. Yet in true Mallory style, we persist on the off chance that if we can improve or impact on even a small scale, it is worth it. You know life, exacerbated by pandemics and stupidity and racism and cancer. The pandemic sucks. The stupidity sucks. The cancer sucks. The racism sucks. None are new, just nonproductive to civilized society for so many reasons.  If you can't do anything, be kind. If only more could be chill like dat.