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. 

Cancer in the time of Covid-19

Do you think Corona Beer Co- after all publicity is good publicity found the line of - yeah except THIS publicity....dang now that's OVER the line. Although sales did go down- I think mutant purchase of Corona went up mega fold- cuz that's how we roll. Have you washed your hands lately?

How it feels.

This article inspired me to update:

Why people with cancer are my guides during a global pandemic.

KEEP PERSPECTIVE-EVEN IF IT IS DELERIOUSLY INAPPROPRIATE. MAYBE JUST KEEP IT TO YOURSELF. 

I've lived with cancer in my body for over 8 years. I've lived with cancer, the clear and ever present danger for almost 35 years. I've gathered a few survival tidbits from experience and also the grievous realization that sometimes you can do everything right and it doesn't help and someone can do everything wrong and survive.  One reason, "right" is in the eye of the beholder. Another is that there are a lot of factors- like luck. I'm pretty sure luck may hinge on handwashing. I'm either the luckiest or unluckiest lady in the world. Depends on how you look at it. I see lucky. I feel unlucky a lot- but I look for the lucky. I can control that part.

DON'T DIE IF YOU CAN HELP IT

Before Christmas- I was pretty sure I was fastracked for the deathmobile. Six feet under, worm meat(I do want to be cremated for the record- no plot of earth needs the toxins that are in my cells, even after handwashing.) By Valentine's(our wedding anniversary) we had begun the long climb back up the ladder to marginal health when an abscess shoved me down again. And then there was CORONA. duh duh donnnn. Oh hell I just wanted to make it through birthday season- please don't let me f#@! up anyone's birthday by dying. Back to crowny viruses from hell. 

HAVING A TARGET ON YOUR BACK SUCKS- GO LIVE ANYWAYS

It seems to affect elderly and at risk most severely. RUFKM? That's like my entire circle. Family, friends- the lot.  I have a daughter away at college(a compulsive handwasher, fortunately), 2 at risk offspring at home and a husband with a very essential job. Which could mean...he's never home during yet another crisis- orrrrr he has income and healthcare during a pandemic.(perspective) Let's now consider my health status...not exactly lungalicious, despite making HUGE strides with the new chemo. BIG. I meant to share- because it's HEEEEEWGe. 

February 27- "yesterday" is Feb 26.  Does this scan make me look fat?

Feb. 26- Jacqui taps me an the shoulder in the chemo bay, my a$$ barely hit the chair- she's shuffling patients, my paperwork and what looks like possibly breakfast- Dr. K is already out the door halfway to the office. They are women on a mission. I HATE the scan results. I hate this. If I could move faster I would -just to get it over with. Jacqui handles shit- like a pro- when it hits the fan- for some reason it tends to hit the fan with me- she jumps in. She's on the exam table, Dr. K is pulling up the results. They are both dang near in tears. Oh Fuck. I knew this was bad. Soap will not wash my hands of this.

I try to process the images. The November image is on the right, the current image on the left on the screen. My brain wants desperately to process this. But there's so few spots on the left- surely that's an older older scan, I must be wrong. I go by how I feel- I feel like HELL. Jacqui laughs and hugs me-I think she's in shock. They were expecting a grand reaction and I let them down. Dr. K nods knowingly, she doesn't believe it. I want to. I really do. I kinda wanna go wash my hands. I look to Phil and back. I am speechless. 

I am far from No Evidence of Disease, but this response is phenomfuckingtastic. We have issues- more so than emotional. We have to stablize the progress without killing the rest of me- which is a delicate balance( mind you covid was a blip on our radar at this point)  and the delicate balance was crashing.  My spleen is EWWWWge. Yeah- that's a bi product of mono as a kid and the glamorous chemo lifestyle I've become accustomed to. Not due to lack of handwashing. My liver is enlarged and showing signs of cirrhosis. Well hell- if I knew that was gonna be on the table I definitely would have had those few extra drinks. The shortness of breath- not fixed by the pleural drain- can partially be attributed to my organs fighting for real estate. So I was treated to a double whammy prescription of waterpills. For about 2 weeks- I literally went to the bathroom every 7 minutes. I timed it. I did not want to be caught mid flight o stair  or sneeze at minute 6.   25 pounds of water weight - right down the toilet(see what I did there- that was a good thing- traditionally down the toilet is bad...) 

DON'T HOARD SHIT. IT'S JUST NOT COOL. IF YOU TAKE ONLY WHAT YOU NEED OTHERS WON'T FRICKING DECIDE FOR YOU WHAT YOU NEED.

We heard Corona was to be called COVID-19- annoying but understandable kinda like in mutnt land- p53 is the protein, TP53 is the gene. I was already vectoring how to get Kiera home from Denver- because mommy mode means I want to gather my family close. I'm considering taking the girls out of the public petri dish. No amount of handwashing can get that off. Phil tells me to hang in there. I was overreacting. I order toilet paper and make Kiera a care package of hand sanitizers, electronics, wipes, masks, gloves, and amazon the other nonshippables. Phil thinks I have completely gollumed.

Phil's experiences with impending disaster to the island revolves around jet ops. He watches me prepare with a mix of mysticism and ridicule. It's an ISLAND people! Yet I am so discouraged by the hoarding. I know so many big families, families with medical needs who could/can not get essentials.  Commodities are TOILET PAPER? I can see it when you are peeing every 7 effing minutes, yet we did not hoard and I told the kids to use paper products like they cared about the environment -now go wash your hands. The rate slowed, but still. I ordered wet bags and baby washcloths. After our trip to Europe, Phil installed a bidet upstairs- during chemo it's been a godsend. TMI- learn from the cancer people and the Europeans- HEEEWWWWWGGG takeways during this time. There are many ways to wipe- my cancer, military, nature friends know this. And when countries are dying from a virus- act people. Don't wait for it to reach your shores- because newsflash, it is already THERE. You can still make a difference.

ACCEPT THE GOOD LUCK, ROLL WITH THE BAD. 

I had no energy to clean or fight the kids to do it. Fortunately, I have help. Phil is an amazing leader, despite all the forces that be conspiring AGAINST allowing him to do what he's decided is best for his people. (I never said that) He has the balance of academy training, Guard time and living with the genetic fallout of what is my cess pool of heredity. He's also rational while I'm hopped up on anti-anxiety and pain meds. Hand washing. Our PACK families brought us meals and kept Lily healthy during rehearsals and performances. My Monica came and after quarantining herself for 2 weeks- is here making sure we eat, clean and don't die. The kids call her momica.  That's why I see luck. I am extraordinarily lucky in love and friendship. If you are reading this- YOU are one a coveted member of this elite yet notorious group. Thank you.

HELP IS A TWO WAY STREET. LOOK BEFORE YOU CROSS. 

 I had self isolated for months. The trick is isolating together. All these years of us being oddly not pro social are paying off. I get texts to see what we need- usually from friends whose needs way surpass ours and aren't getting met. My friend Angel stops by with med supplies and reminds me she has a respirator if shit gets real. She's spent almost 2 decades of living despite phenomenal medical hardships with her daughters. Friends from all around the world rally with cards and gifts for Kiera whose spending her first birthday away from home quarantined(WHY she is not home is another story...) after I suffered a near mommy meltdown- all I had to do was ask. Another friend gloriously ships me 3 masks, with a note: Finally something I can do to help. Wash hands. The coveted kind- immediately pushing aside any desire to sell them on the black market to pay for college. I would never- it's why I am unlucky in business. I'd give them away in a heartbeat. Monica and Phil ensure I won't and that I wear it to clinic. But how can I in good conscience wear this fancy mask when my staff and Phil's group and so many simply do NOT have the protection they need? And my mom reminds me: Please keep safe for you and your family. You are needed.  You are too.

PRETTY MUCH ALL OF YOUR SYMPTOMS CAN BE ATTRIBUTED TO COVID-19 OR CANCER. IT'S PROBABLY A COLD BUT GET THAT SHIT CHECKED OUT. AND WEAR THE EFFING MASK- THERE ARE PEOPLE DYING FOR YOUR RIGHT NOT TO. 

Ok. the mask will not save you. it's only good for 15 minutes. If it gets wet- it's done. Reuseable masks have to be worn and cleaned properly. This is a new concept for the self centered- the mask is actually to protect those around you. Handwashing. Is a surgeon worried about getting a taste of the intestine he just unearthed? They sure don't want to- but the mask is partially to prevent them from drooling into the cavity- or sneezing... Do women wear feminine hygiene products because we don't want blood all over? Hell that ship sailed during first menstruation- it's a social convention to not bleed all over and well- hygiene matters. Wash your hands. Sing while doing it. or not. Wear the mask in public. Be a good Heeeeewwwwman. 

Me: I am still weekly to clinic for treatment until things get so bad it's "too much" of a risk. I  hate statistics and effing risk v benefit is part of the 5w's. I'm down 35 pounds and wear leggings in public. Trick comment there- I don't GO in public- except to clinic- so there. I'm not on oxygen. I feel ok. It depends on the day. I love reconnecting with friends online- that is the biggest ray of sunshine in this pandemic. Weaned round the clock pain meds and finding the balance of comfort energy and stress. We are about 2-3 weeks behind the mainland surge- which puts our surge starting soon. I am slated to get my pleural drain out tomorrow(Friday) before I think he goes to the front lines. If I wasn't married to my soulmate, love of my life- McBreathey would have a TRO against me- I'm old enough to be one of his older sister's friends. mwahahaha. Kidding- I know my place- right behind the basin- scrubbing my hands while singing any song I want.  May the luck be with us all.

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