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.

check out snarkycancer.com for all kinds of t's and snark. 

The Meaning of Mutant.

I am a MUTANT. But guess what? So are YOU! neener neener neener.

mu·tant  ˈmyo͞otnt/

dictionary.com

adjective

1. 1.
resulting from or showing the effect of mutation.

noun

1. 1.
a mutant form.

Merriam Webster Dictionary

NOUN

: of, relating to, or produced by mutation

OXFORD Dictionary

ADJECTIVE

Resulting from or showing the effect of mutation.
‘a mutant gene’

NOUN

A mutant form.
‘frequently only a small percentage of the offspring of mutants resemble their parents’

Cambridge Dictionary

NOUN

an organism that is different from others of its type because of a permanent change in its genes:

These mutants lack a vital protein which gives them immunity to the disease.

This mutant gene is thought to cause cancer.

figurative humorous I'm convinced he's a mutant - he's not at all like the rest of our family!

disapproving an unpleasant and frightening thing:

The result of these experiments will be a nightmarish world filled with two-headed monsters and other mutants.

So. Well those are the definitions of mutant from, you know, reliable sources. Because I'm just Jen. Me. The culmination of my experiences(many "highly associated" with my mutation in the TP53 tumor suppressor gene). AKA- LFS- Li-Fraumeni Syndrome. 

My family deals with hardship through laughter. Dark. Morbid. Hysterical. It's an acquired taste. It took Phil awhile. Many of my close girlfriends are forever scarred(remember scars are BEAUTIFUL- they show the battles you've won) by interacting with my extended family. Those who choose to keep me around- well are now family. Friends are family you choose. My mutant family is my collection of weirdos who happen to share the same mutation and snarky need to swear, I mean live life to the fullest. 

Words are precious. A single word can change the meaning of a sentence, the light in someone's dreams, how you perceive the world. Words like: cancer, scars, mutant. 

You have: CANCER. Your scars are HORRIBLE. I AM A MUTANT!

Newsflash- we are all mutants. Our DNA mutates over time to adapt to changes. Not all mutations are BAD. SO declaring I AM MUTANT, HEAR ME ROAR- is kinda like saying- hey check it out, the sky is blue. When your precious offspring toddles over and asks you WHY the sky is blue- well that's where shit gets real. My kids are not offended by the word, but I am also kinda shocked by what does or doesn't offend kids these days. Get off my lawn???

There are many many many mutations. Caused by many many many things. Not all are bad. Some are very very bad and contraindicated for this whole living thing we seem to enjoy- mostly. There are so so so many p53 mutations. There are so so so many OTHER mutations. We cannot predict the pattern of cancer or if these superior(in my opinion) mutants, will get cancer at all. The data pretty much says we will. I used to crave data. Now I say fuck it- I am not a number. BUT- do not interpret this to mean data collection is not important- because it IS. Research is so very important. Yet so many times, the researchers find solutions in the rare- the zebras, the unicorns. We are the rare of cancers. Half of all cancers have p53 mutations. We just happen to have one of these mutations in ALL of our cells. We are the key to solving over HALF of the cancer riddle. If we can LIVE long enough to get there. We are living LFS. 

There has been some dissent over the use of MUTANT. Someone compared it to using the N-word. As the less spectacular and whiter half of an interracial relationship providing interracial offspring- I cannot even go there. Because guess what- when I type- N-word, you know what word I mean. Now if I call a human that word- well that's rude and awful and despicable and sets decency back decades. Now if Oprah, Jay-Z, or Kevin Hart use the N word, well that is up to them. I can't get my kids to do dishes- I cannot possibly solve an issue like this in my blog. BUT that being said- no comparison- a lively band of mutants to generations of oppression. It's a word. You can or cannot use it to identify yourself if you feel it may or may not identify you. I've found that the merry band of mutants who identify with this M- word are my tribe. Their approach to cancering and life in general are very similar to mine. 

So- I polled my mutant friends and non p53 mutant friends on their associations of the word MUTANT. Mind you- I am an acquired taste and this is completely absolutely and totally biased. These are my people. And this is their voice. Words are what they mean to you. If they are empowering, embrace them. If they offend some, respect that. But always, always, always BE YOU. Mutations and all. 

What does the word MUTANT mean to you? 

-   Super awesome

• PURE FUCKING AWESOME BADASSNESS!!!!
• A family that I love and adore
• Not wild type
• Containing novel genetic information not inherited from parents
• The X-men  x 10
• someone who has a mutation
• Pure love
• Baddest form of badassery ever. 
• I am of course familiar with the word (Teenager Mutant Ninja Turtles!!). I guess I would say it is a being (animal, human) that has developed abnormally as a result of an external influence. But I don't think I have ever used the word. It seems like a very 80s word used in fiction.
• I am in a family of mutants so family reunion to me.
• Love
• Before i used to think X Men 😂... now I think mutant means some of the kindest, most compassionate, loving, admirable people I’ve ever met! Beautiful souls that’s what it means ❤️
• Inner Strength, resilience, friendship and understanding
• Dont want to crush into your positive vibes. Anyway...most time being a mutant means separation for me, and loneliness. The 10 Minutes a day virtually in Facebook for sure make a difference! But in real life, it makes me feel very lonely...
• Teenage Mutant Ninja Turtles
• I kind of think of "mutant" as normal, but the word tends to shock people. It's more acceptable to discuss genetic abnormalities by saying, "I have this mutation," rather than to say, "I am a mutant." Maybe it just sounds kind of aggressive or attention-seeking - something people say for the shock or laugh value? Mutation happens all the time, and I would guess that most people have at least some form of genetic mutation. I know I do... #ProthrombinGeneMutation
• Courageous badass super hero
• The key to the future of humanity 
• Friendship, connections, scans, fear, love, science, hopefully awesome super powers!
• A tribe trying to withstand this p53 mutation shit storm through love, friendship and a little humor.

Just Part of It- the Giving side of Cancer

As a cancer family, we have lots of organizations that have helped us as a family. Some with very tangible gifts, the Hawaii Children's Cancer Foundation that helped us with some unexpected bills when Lily was first diagnosed or the Make A Wish Foundation, who sent our entire family to Disney World after Lily finished treatment. Other groups like HUGS here in Hawaii, offered respites, surf outings and fun with other families going through tough times.  They also helped us celebrate the lives of some of our dear friends in their annual Celebration of Life ceremonies and we could always look forward to wonderful Christmas Parties. It is humbling to be on the receiving end of charity. But it is also an important thing for families to be a part of it. For years I volunteered in many different ways, we always raised money for St. Jude's in grade school, I helped run a Christmas card campaign at the Children's Hospital in Denver when I wasn't spending time wiping down the play room, delivering books to patients or doing arts and crafts.

Hawaii doesn't have as many resources as some other states, but the ones they do have are very special. Somehow we seem to miss out on the sibling camp and cancer kid camp every year. I think it would help my kids, but then part of me is truly grateful we are not in clinic enough to be aware of or recommended for these resources and too busy with normal activities. As I've learned, adult cancering is very different than kid cancering. As it should be. Kids shouldn't get cancer. I've always walked the fine line between awareness and normalcy. I've known adult survivors of childhood cancer who let cancer be the very foundation of who they were. You can not go through something like cancer and not have it BE part of you, but I want more for my kids, I want them to have moments of normal in the world of LFS. It's a balance. I shy away from letting my kids be the spokesperson or poster child for events. I didn't want them to be known as the kid who has cancer, to be labelled. Yet let's face it- it is a big part of who we are. So this year, Lily is old enough to understand more about cancer, more about the organizations we support and why we do it. I gave her the guidance and let her make decisions. She loved being up on the stage and shaving her head for St. Baldrick's. Part of me wonders is it because of me, am I influencing her in some way. Which is silly- OF COURSE I am influencing her. By my actions, my guidance every day I influence her and her siblings. And this is one of those times when she took the reigns and I have to say I'm extremely proud of what she's learned, the awareness she took to school and how honestly happy it made her to be a part of the St. Baldrick's family.

A couple weeks ago they called and talked with us for a blog post. I was tentative but also decided that it helps me immensely to hear positive stories. Lily is a positive story. The 5 year survival for her tumor was poor. Throw Li-Fraumeni in there and well the odds are kinda stacked. BUT we make our odds. By making the best of our time and efforts. I am extremely proud of our family. It's not an easy balance and they all are doing amazing and cancer is just a part of it.

St. Baldrick's Blog- Lily's Story

Day 3 of 21. Work Wednesday.

I have not "worked" in years. I am a professional volunteer and a wife and mom. That IS enough. There were years in between becoming a mom and now that I wondered IF it was enough. I'm pretty independent, it would be nice to bring some $ to the table. I am lucky that I do not need to have a job for us to get by. Especially here in Hawaii. Yikes.  I used to cook, clean, transport, help and the "savings" was equivalent to a full time job.

Wednesdays are "short" days at school. The kids get out early for some silly antiquated reason. I usually spend my mornings picking up and taking care of business. Sometimes I go and hang out with my sister in law and her boys. Business is mostly work I do for the nonprofit Living LFS.  It's work I'm proud of and happy to do and it is important. Li Fraumeni Syndrome will never be a worldwide epidemic since less than 5% of all cancers are linked to hereditary causes, but it is absolutely a worldwide disease. The internet gives those of us with these rare conditions a chance to connect and support each other. It is pretty amazing.  I moderate the support group, run the Facebook page and try to keep things rolling smoothly. In an organization that is for people facing cancer after cancer, run by people facing cancer after cancer- this is pretty tricky. But these people are amazing and I have help from some wonderful mutants. There are ups and downs in the mutant universe. Sometimes all we can do is just be there when good friends are faced with impossible situations.

 I rest up of for the after school routine. I pick the girls up- come home, they do homework for an hour and we are off to voice lessons. After voice lessons I run home, swap the 2 singers for the soccer player and take her to soccer practice. This Wednesday, my SIL made us dinner, which was fabulous- and no small feat. It also means one less night of fast food- because with Phil's schedule lately we tend to just grab. Not ideal but we do what we can.

Soccer practice is at my least favorite field. I've spent much time there, baseball, archery, flag football, soccer. There are about 10 other teams practicing at any given time. Parking sucks, the bathrooms are gross and coach requests we sit near where they practice- which means not in the car. On chemo week- lugging the chair from the parking lot out to the soccer field- feels like a lot. Today I'm lucky- a couple teams aren't practicing and I score a parking spot nearish the field.

 I appreciate that the coach is a volunteer and old Jen would jump in and help. Right now Jen is tired and would really like her youngest to play soccer because she loves soccer and the activity is good for her. But if coach keeps annoying Jen, Jen will pull child from this team and pay for lessons at the Kroc center. I need to look into that again. It's bad when the third person comes out. I want to scream- I am not THAT parent. I am engaged. I am present. That is all I can be right now is present- and it IS enough. Coach yells questions to parents. I purposely yell wrong answers. Perhaps he will be deterred by sheer ignorance and incompetence. Apparently not.

The girls are rewarded for their efforts with a grass fight. The field was finally mowed and there are huge piles of grass everywhere. We don't have fall per se, so this is as close as they get to mounds of leaves. I start to itch just watching them. But the sky fills with burnt orange and pinks and the sun ducks down behind the trees and the girls are giggling and I think, it isn't so bad.

Day 1 of 21. Chemo Monday. A Day in the Life of Metastatic Breast Cancer.

My feed is already alive with Breast Cancer Awareness. We haven't even completed Childhood Cancer Awareness month yet and I am not the only one dreading Pinktober. The awareness of pink. Pink 5 hour energy, vitamins laced with carcinogens, donating about 5 cents per bottle to a breast cancer charity. We call that a self licking ice cream cone. Pink NFL, just ugh.

About 30% of breast cancers metastasize- spread to other parts of the body. There are certain places the obnoxious yet determined breast cancer cells like to get stuck- lungs, bones, liver, brain, but they can go ANYWHERE. Skin, yep. Bottom of a foot, sure why not? One of my kids explained to someone that I had lung cancer.  I have tumors in my lungs- but they are breast cancer tumors. I have brain tumors, but also breast cancer cells- well we think- we didn't actually biopsy them (THAT IS THE ONLY WAY TO KNOW FOR SURE) and well the whole brain surgery thing is pretty intense and knowing for sure didn't change this specific treatment(sometime it does) so we didn't do it.

Living Beyond Breast Cancer is a great org.  www.LBBC.org
Making changes for those living with mets. 

Like childhood cancer, very little funds go towards metastatic breast cancer. Most funds go toward pink campaigns and finding out how to treat these early stage cancers. Not nearly enough goes towards finding out why some metastasize and some don't. Almost all women with metastatic breast cancer DIE from breast cancer or treatment related effects. And it is usually in less than 5 years. I'm in a wonderful group on Facebook that has long term survivors in it and that is amazingly helpful. It is important to know it is possible and kinda how others managed to balance cancering and living.  This is important for how my day went.

So Every 21 days I have chemo. I live in 3 week cycles. I plan things around when I know I will feel ok and try to limit activities on chemo week. Generally I just try to make sure I keep the status quo rolling. Unfortunately I never know when I will feel bad- so sometimes I just have to roll with the punches or sit back and realize- I feel pretty good. I'm gonna try something new this cycle- time allowing. I'm gonna take you along on the 3 week journey. I'm gonna try to post daily about kinda what I feel like- some may be mundane(please, please lets hope for mundane- we LIKE mundane- not nearly enough of that- it's highly underrated. )

A week and a half ago, from Atlanta, the husband texts me- is Monday chemo? He had been gone for 3 weeks(the entire last cycle) home for a week then gone for a week. I wanted normal- and I appreciate Murphy taking the time to jam it down my throat. But for those quick ones counting along at home- that's 5 weeks. Which was kinda a relief because those chemo Mondays sneak up pretty quick. Like every 21 days. I had one more week before I was due back at the pink palace.

That week goes fast. Sunday nights before are a mix of dread and snap yourself out of it kid- enjoy what time you have. This past Sunday we took the boy child out to dinner for his birthday because well- weeknights are hectic. He actually invited 3 friends. To come out to dinner. With us. It also gave Phil and I a chance to visit with his brother and sister and law and their boys- it was a great big family dinner. It was the perfect distraction with my favorite people.

I have issues with insomnia. Whether it's anxiety or chemo or hormone changes or cancer, I don't know. I'm learning my way around it. It's the constant battle of- if I don't get sleep, I'm going to feel worse and then I stress and can't get to sleep because my brain is on, so I read or listen to music until my brain is tired enough to try sleeping again.  So some mornings are difficult. Which is weird because I have always been a morning person. This Monday, I rolled over and it was 6:37. Which is 7 minutes past when we are supposed to be on the road. We try to open up the clinic or else it becomes a day long affair and I have to call in favors to have the girls picked up from school.

I shower, grab a banana, a huge flask of water, and my Phil and we are out the door. Lily's teacher lives down the street and is kind enough to grab the littles on her way to school for me. Kiera helps wrangle the girls. Phillip does not speak unless spoken to in the morning. He inherited that from his dad. The bigs are then on their own for getting to school. We sit in traffic. For an hour. Sometimes more. Sometimes less. but not usually less. If we take the HOV lane- we exit this way to Tripler...

We usually valet, when we are this early though we don't need to. Sometimes we bring Phillip with us for his appointments- we did not have him this past Monday.

We walk inside, to the left and go to Medical Specialties Clinic. It is right next to OB GYN. Which is sometimes hard. But also a reminder of new life. The waiting room is shared with the GI clinic and Infectious Diseases. Whoever decided Hematology/Oncology should share anything with Infectious Disease is not my favorite person. I love the weird window mural. I have no idea what's on the other side, I'm pretty sure it's a wall.  We check in at the desk and wait for Brenda to call me for Vitals. Sometimes Brenda isn't there and Un Suk takes vitals. Brenda and I have a better rapport. I actually look forward to seeing her.

If we are early enough, after the dreaded weighing in and vitals, we mosey down the hall to the chemo bay. When we are lucky we get the corner chair. We are lucky a lot. Early bird gets the corner chair. The corner chair is red. The surrounding walls have handprints from all the chemosabes who have finished chemo. Many sign their names and write thank yous or inspiration. I'm not sure how they handle forever chemo patients like me. I've never asked. It seem unlucky and presumptuous to ask.

Nurse Jacqui or Nurse Cindy then come over and access my port. They are awesome. It rarely hurts anymore. They draw blood from my port and hook me up to a saline drip while we wait for the lab to run my blood. It takes forever.  I apparently have alien blood. One time they actually called and said it came back as non human. We had to draw again. I suddenly became human. I've tried problem solving this- going in early to get blood draws, going to a local lab. It never is more efficient. So we just go and wait. I take a book, we play scrabble, if the signal is ok, I play on the inter webs. Phil usually kisses me and goes to get us coffee, or tea, or whatever sounds good. Pumpkin spice sounded good this time. There was no pumpkin spice. That was sad. But I will live. 

While Phil is procuring coffee, my oncologist usually walks by and stops to chat. There is NO privacy in the Bay, none. Everyone knows everyone's business. Some people pretend to look away, turn up their tvs or sleep. It is what it is. I'm not overly social, but I get very distracted by all the comings and goings. My onc wants to know how I've been. I tell him I'm not sleeping well and it freaks me out and the anxiety is pretty bad. See October is kind of ground zero for these latest adventures. October is 2 years since I've been on chemo. 2 years is also about the average life expectancy of someone with mets. No stress trying to beat that number or anything. So I mention I'm taking more ativan than I like. Oh and I need a new Physical therapy referral- shit now I look totally ADD.  My onc is mellow- which I love.  He asks if I'm seeing anyone - mental health wise. I must look offended because he back pedals and says- I only say this because they might be able to prescribe something more appropriate than I could. It's what they do. He gets me. I don't like taking stuff and I sure as hell don't need to add any appointments to my life, but well I also kinda like sleep and sometimes a healthy means to an end is a good plan. We make a plan for a referral. 

Phil is back with coffee. He also scheduled October appointments. Nurse Cindy checks on me- I ask about a notice I got (EOB-Explanation of Benefits) about generic Kadcyla vs Brand- according to the $$ there is a huge difference and I want to know if she's seen that. She was pretty sure there is no generic Kadcyla but checks for me. She hangs a second bag of fluid while we wait. When I get dehydrated, I feel icky and the chemo dehydrates me.  The chemo I'm on is not cheap. About $9500 per dose. I am worth it. Not sure Tricare thinks so. But I am. We hang out and my onc brings in a new patient. She has the shell shocked look you tend to get when you are told you have cancer. One of the long timers- who is in purple checked matching button down and shorts hugs her on his way in. Nurse Jacqui sits with her- but chemo bay is buzzing- machines are going off- they are perpetually short staffed.  The new patient doesn't know where to look. I get up and go sit next to her. We talk.  She doesn't know if she should call her husband, she didn't expect this, she was just a little tired, but not this.  Call him. Just call him, you aren't alone and he needs to be given the opportunity to help. But the kids, how do I tell the kids and the family...they will worry. But they will also help I tell her and take my advice- accept the help even if you don't want to. We chat, onc comes back- I shimmy back to my seat and give her a modicum of non existent privacy. 

A young man finishes his last chemo. He started a few months ago. He hugs everyone and is out the door. I feel that twinge again. I won't have that moment. New lady waves as she leaves. I feel for her and the whirlwind her life is about to become. One of the old timers rolls in. He predates me by A LOT. He doesn't look well. Well no shit- everyone there is not well- but that's the thing about cancer- it's sneaky. His face is gaunt. He does not feel well. You can tell. And I think I am not there either. And it makes me sad for him and way more introspective than I like to get in the chemo bay so I am relieved when Cindy brings by my magic meds. I really want them to keep working- generic or not. 

My bloodwork is always fine. It's 11:20. We've been here for over 3 hours. That's part of the frustration. BUT it is important to monitor it and we are really lucky to be by Tripler. I don't have to fight over insurance, usually. I don't get bills, usually. And I get good care. There are not a lot of perks of fancy cancer centers, but I'm banking on the perks I so far have been given- good competent care. This bag takes only a half an hour to run. I get two shots after that- one to keep my bones from breaking down and a B12- because I like it.  We pack up and head to the car. 

We usually grab a salad, enjoy a "date lunch" at the kitchen table before Phil runs off to begin the after school drill. I usually nap. Hospitals wear me out. I throw together 20 breakfast burritos for the kids this week so I don't have to hear every morning- what's for breakfast. Or if I do- there is an answer. Phil calls- the girls have student council, we forgot, he's early. Dang. I lay down for just a minute.   I hear the kids tiptoeing around with their complete lack of ability to be quiet. Phil is making dinner.  I get lots of hugs from the kids. That part is great.  Kids kind of drift in and out for dinner. It works out- we get a little time with all of them.  Even though I feel kinda ick, these moments are some of my favorite. The are my no rainbow without the rain kind of moments. 

We watch football and new shows. I am so tired but I know the second I get into bed, the insomnia hits. At 10, we call it good and go to bed. At 10:30 I am back downstairs reading, as to not disturb Phil. He comes and checks on me. I never know when he's flying so I just got in the habit of trying not to disturb him. Plus I get a little achey. Finally I feel sleepy and give sleep another try. This time I sleep. 

PET Scan Results- the Adventure continues!

I got THE call.  The call you don't want after your PET scan. No news is good news. There is news.

The first thought.

DAMN. 

Second thought. 

GDMFCSSOB.

I cut to the chase- How bad is it?  

It's not horrible but we have progression and we need to discuss options. I can tell you right now what I'll recommend. 

Yes Please. 

So what we know... the short story is I have some new growth and we have to switch up our chemo to get the cancer to knock off it's nonsense. Metastatic Breast Cancer is a chasing game. We treat, we hope it works, we rescan and hope it's still working. Most chemos for mets last for a short time before the crazy cancer misbehaves and works it's way out of time-out. Our job is to be attentive and keep it in time out for as long as possible. My cancer needs to be put back in time out. 

15 months ago I had lots of round spots in my lungs, bones(femur, iliac, spine, arm). In March- most of those spots had disappeared(major yay!)- except for a shadow on my femur. That is called complete response- all those misbehaving cancer patches- had the chemo and went into time out. So we continued because it worked. 

My cough is back, which is a daily reminder that I am not as healthy as I pretend to be. I do feel pretty ok. Which I am really grateful for. Although there is still activity in my lungs of cancer cells- the old spots are pretty stable. That is good news. Unfortunately there is a new spot in my hilum(middle of the chest- part of the lungs) that's bigger than I'd like, a bunch of new bone spots-in new locations- and the right femur spot of old is pretty angry. On top of that there is a little adrenal spot- which adds yet another organ affected- not good- but also reminds me of Lily kayda's adrenocortical carcinoma and freaks me out. Breast cancer can metastasize to the adrenals- but it could also be new tumor. So that is something we will have to watch carefully and evaluate. For now we treat it like a met- because it is small. 

When new spots grow- there has to be a change in plan. If what you are on is working- there should be no new spots. Mind you the stress of the past month's brain mets- physically and emotionally- probably are weighing heavily on my body. But we have options. We hoped for stable- but we deal with what we have. 

We need to throw some more at the hormoniness of these tumors- they are hormone positive meaning they love estrogen and progesterone -which women's bodies make. I got rid of the organs this summer- but the amazing body has many ways to do things- like creating estrogen from other molecules. There are pills that I can take daily that will stop this conversion- to make sure we have less estrogen feeding the cancer cells. Of course the down side to this is some crummy side effects and bone weakness- which is already a problem due to the mets. But looking at alternatives- you have to get rid of the biggest threats. So I will be starting an Aromatase Inhibitor(AI) called Arimidex.  It's a pretty standard hormonal treatment for breast cancer after the ovaries are shut off(post menopausal).  SO plus side- no extra trips for infusions with this med. 

Since I have new bone issues and will be adding the AI- I keep taking the Xgeva- which helps my bones hold on to calcium and prevent breaks from the weak spots. That is a shot and will still be every 3 weeks. 

Then we have to address the new growths. We will be trying a chemo called Kadcyla(TDM-1- which Phil has taken to calling Touchdown Molecule 1). It is a drug we seriously considered doing first- but  recommended that we keep it in our back pocket and give the other chemo a chance. It's a buying time proposition and we try and eek out each step. We got 15 months out of my cocktail- I would have liked a bit more but am so grateful for this past year- ups and downs and seeing new milestones for my kids and the together time and reconnecting with family and friends. There was a time years ago where there were not these options. I hope for my children's sake and all other fighters out there- there will be even more down the road. 

Kadcyla is essentially Herceptin- with the chemo attached to it that finds the Her2 receptors and latches on to the cancer cells. It is very directed chemo and they have seen good results. It will probably have a similar side effect profile to what I was on before- but we will see.  My doc called it the iPhone 7 of herceptin- kinda wished he had shot for iPhone 8- the 6 was released much too soon. But it will be an infusion every 3 weeks- very similar to what we have been doing. The nurse ordered it today- so we will wait to see if it comes in on time for me to keep on my Monday schedule. 

So the take away is that we have continued hurdles- but I remember how bad it felt to see all those tumors light up over a year ago and here we are today.  We take it a day at a time and live our best life and try to find as much love, comfort and fun along the way. I am very thankful for all the positive energy, love, words, juju, prayers and offers.  It truly makes a difference, for all of us here. I also want to say- if you feel like calling -call- or text or drop a message or a card.  Please don't be afraid to  reach out. I know it's hard to know the right thing to say- because sometimes there isn't anything that can help- but I can tell you how much it means to just even hear I'm thinking about you- and it gives me a chance to respond and let you know that I'm thinking about you too. 

And a HUGE HUGE Thank you for the Team Mallory Support- my friend Gina was kind enough to start the fund up again for a 3rd SALE!  If you are interested in grabbing this fantastically designed Tee by Hope Friedman - it will be up until February 8. There's a new ladies fit too! We've been using the proceeds to have the housecleaned every 2 weeks and tip the Valet guys at Tripler generously. Oh the difference it makes!! I still am completely in awe that we have a t-shirt- but adore seeing pictures of all of our friends sporting Team Mallory. I'm hoping to get to tell you about the gamma knife experience soon- I'm still waiting on my superpower to show up...as my good friend Trish says- I wish my super power wasn't sprouting tumors! 

TEAM Mallory Until FEB. 8

Mut-landia

We just wrapped up the girls' production of Little Mermaid Jr. It was fabulous- and since it is my favorite of all time- I could have watched it over and over and over- but all good things must come to an end.  Kiera played Carlotta, a jellyfish and a lilypad. Lily was Arista, a mersister and a lagoon creature and Bella was a sailor, an unfortunate soul, and a butterfly.

They all had an amazing time with this production and with the cast and crew. Other moms would come and tell me how sweet they were( I try to avoid back stage- it is far to chaotic for me- which says a lot since our day to day livelihood is anchored in chaos.) One mom said Bella would rally the other sailors for a group cheer before each performance.

So on the Sunday evening after the last performance, Bella curled up in my lap and sobbed and sobbed and sobbed. Now Bella is just discovering her dramatic side so part of me wondered if this was overacting or actual heartbreak. Either way- I was glad it had been such a good experience for her that she would miss it.  Yet the next day I woke up with a headache and her nose was stuffy. Bella gets weirdly emotional before she gets sick. The little petri dish had snot bombed all over me! And here I was with 3 days to get everything together for a mutant meeting in Portland.

I chugged OJ. I took extra vitamin c and zinc. I rested and drank stress tea.  And I knew Monday when my head throbbed and my throat tickled that the petri dish had done it again. On Tuesday, I got the kids off to school and climbed back into bed. Somewhere around noon, I felt a hand on my head.  Phil grabs the thermometer and I try to yell no, but that would require energy I just don't have. 102.3. GDMFCSSOB. Not only have I lost a day of prep for the mutant meeting, I now am getting carted into clinic for a fever work up.  The up- side is that Lily has her endo appointment at 2, so somehow Phil is getting a 2 for 1 Tripler deal.

As I am trying to pull clothes over my hot shaky mess of a body- I get a text from my mom. Her mom radar is spot on- again. I text back yet in the fever haze- never hit send.  By the time I get to the hospital I hear my phone pinging and buzzing- apparently she appealed to the mutants to see what was up and they are now rallying in force. The nurses draw blood from several locations and plop me in a wheelchair to send me down for a chest Xray. Phil and Lily finish up with her appointment and come find me shivering in the frosty annals of radiology. Finally they call me back and the tech apologizes for the wait- she's the only woman around and didn't want to subject me to the boys.  She helps me out of my shirt and points out that I am seriously feverish. Yep hot mess- that's me. We finish and head back to clinic. I just.want.to.sleep. My counts look good, my onc comes in to talk with me.

We agree that it's probably just a virus, we do a strep swab just to be sure. He wants to know about this trip- THE TRIP- Mutants take Portland- Mutant mixer- Hugging mutants-Mutlandia and I can tell he is not keen on me flying. I ask him what his worry is- he says well- it makes them look bad to put a sick cancer patient on a plane. I laugh- OH I though you were worried they would freak out and think I had Ebola or something. His eyes get wide- I didn't even THINK about THAT. Oh great. Not to give him another reason to keep me locked down. He does not think I should go.  One of the team comes in and helps problem solve. We all decide that the decision doesn't need to be made right now- I still had 24 hours to miraculously lose a fever and open some airways. Lily finally gets to check out the chemo bay- and is pretty impressed with the little tvs.  We finally get a few scripts and head home.

By Wednesday the fever is gone and the congestion is trying to break. I lay under my neighbor's steam machine slathered in vicks.  Mutants are checking in at regular intervals. I can breathe out of one nostril- that seems good enough to fly in my world. Phil keeps asking me what I think, I keep asking him what he thinks-I am getting concerned texts from family and mutants alike.  My neighbor pops in and out and it hasn't even occurred to her that I might stay-plus she knows me- you'll get more rest on a plane and in a hotel room than you will here with 4 kids she says. Especially with the storm coming.  And that's true- my husband in his constant efforts to make me comfortable had gotten us first class tickets. Wait, what? Storm? Yeah- there is a hurricane heading towards Hawaii.

These two days were supposed to be dedicated to final meeting prep- and as somehow seems to happen with LFS and life in general, those days were pulled out from under me. My heart hurts so severely at the thought of missing my friends, I can barely breathe- but that may just be a virus.  One of my very dear mutant friends will not be joining us at the meeting because shortly after she filed some of our incorporation paperwork she was schwacked with a cancer diagnosis. As she lays recovering from major surgery- she texts me comfort- when she is personally feeling the loss of not getting to hang out with all of us after being the driving force behind bringing us together.

My cousin - who has been an advisor, a friend and an inspiration during some of my roughest times- chimes in that there is no stress- I can cancel at the eleventh hour. But I don't want to cancel. I may not be much use for a couple of days- but I'm pretty sure Phil needs this as much as I do. SO I throw a few items in a bag taking more time to make sure all my medications are packed than toiletries. And we head for Portland. Because this is what it's like Living with cancer, Living with LFS and just LIVING. I could not do it without the support system I am lucky enough to have around me- and sometimes the best medicine is just Living.

What to Expect when you are Expecting Cancer

About 1.6 million people will be diagnosed with a new cancer this year. According to the American Cancer Society, that number doesn't even count basal and squamous cell skin cancers. 577,000 people are expected to die of cancer. That is one person a minute. Many of those cancers can be prevented by not overusing alcohol or tobacco. For some people, those who have family histories of cancer or mutations that are known to result in cancers- the preventative measures are bleak. What is abundant are the questions, the worries, the risks, and the unknowns.

Will I get cancer?
When will I get Cancer?
Is there anything I can do?

For those with known mutations, like in the p53 tumor suppressor gene-also called Li Fraumeni Syndrome, these questions can often lead to an overwhelming sense of futility. I've heard of ladies being told they have merely months to live- so they cash out their life insurance policy, run up all available credit cards and live it up for months- travelling, partying, living. Yet when those months turn into years, suddenly they are faced with a new prospect- Living on borrowed time, and a bunch of debt. Also what many non mutants call, life.

Everyone at some point faces a life altering, spirit moving moment. A moment that forever changes the path they were on due to a change in the expectations for the future. That moment came for me when my daughter was diagnosed with adrenal cancer. I spent most of my life knowing that cancer followed me like an unwanted shadow- sometimes leaping in front of me- a reminder of the darkness that envelops when you are consumed by it. I never pretended that it wouldn't touch me- I just chose to live the moments I could until it did and not waste those moments worrying that it would.

But then there were these big green eyes asking me- why? And her brothers and sisters wanted to know why too. As often as I told them it wasn't there fault- the little voice inside my head screamed- of course it's not- it's yours. The gene after all came from me. A gene that had a 50/50 chance of hitting them. I would never point a gun at my head or theirs with those odds- why was I cavalier about these?  Because there are no certainties. I was in my 20's and perfectly healthy. I had seen many incredible places and experienced many of life's wonderful treasures- one of which was falling completely and totally in love with my best friend and becoming a mother. Like the hopeless romantic- I believe that love conquers all and that I would definitely choose to love and have lost than not love at all. That is the same choice each person makes for themselves. There is no right answer, just truth. I look at my children as opportunities to love, not endless opportunities for loss. When your child is severely hurt or diagnosed with a major illness- your mind goes to the possibility of the endless abyss that is losing a child. You are then faced with a choice- to live life with the shadow of loss- or live life with the potential for greatness.

Facing a future with cancer is no different. There are days when the shadow of the abyss creeps closer- the days that are filled with scans and preventative screens. Those days are when the rattle and hum of magnetic imaging machines are silenced by the internal whispers of worry. Days where lumps or bumps or fevers pop up that are nagging darkness threatening a storm. You could ignore these steps, but everything and everyone tells you the storm is coming- your best bet is to catch it early and wait it out. Sometimes it is nothing. There is celebration. Sometimes it is definitely not nothing. It is impossible to not feel the weight of the finality of cancer. It is impossible to deny the pain, emotional and physical and the scars are permanent. But so are the lessons. So is the reaffirmation of life. We get warning bells when others are silently taken. The path is not easy- but it is what we make it. If we make it what we expect- that may be cancer- if we are open to receiving the gifts that are unexpected- we may get much more. And sometimes you have to be careful how hard you look for something- because you may find something you didn't want to. If you are expecting cancer- sooner or later- you might find you have cancer. If you expect to live- sooner or later you might find forever is shorter than you thought and sometimes when you expect to die you might just discover an amazing will to live. That is what you can expect, when you are expecting cancer.

Li Fraumeni Syndrome Support Group

Li Fraumeni Syndrome is caused by a mutation to a tumor suppressor gene. In even the best case scenario- a mutation here is not a good thing.  p53 has been called the "guardian of the genome" and plays a HUGE role in making sure cancer doesn't go haywire. It makes sure DNA damage gets noticed and repaired,it makes sure the cell isn't reproducing like a bunny while damaged, and if it can't get a cell repaired- it makes sure the cell dies. It's a pretty cool thing. Except when you don't have it. Then you have p53 envy, you find you have a huge risk of getting cancer- and not just one cancer- many cancers over your lifetime. Kids who have the p53 mutation get more cancers than those who don't and I'm not the first to say- nor will I be the last to say- Kids should never, ever get cancer. It's just not right. That fact, especially when the tumors are brain or adrenal,  is actually one of the BIG flags to doctors that a family might have a mutation like the p53.

I learned about Li Fraumeni Syndrome in the late 80's, early 90's. My brother had just been diagnosed with a brain tumor, months after my cousin had been diagnosed with a brain tumor. An aunt and an uncle were also diagnosed with cancer during these months. Our first thought was- stop drinking the flipping water- but then an amazing article hit the newsstands about these doctors in Boston who were studying family cancers- especially brain tumors. My grandfather died of a brain tumor- so my mom grabbed the phone and started making calls. She talked with a young doctor named Frederick Li who sympathized with our situation, but my brother passed too quickly to be helpful to their studies- there was no biological material. It was mentioned that if my dad were to get a brain tumor- that would be an interesting case study and please let them know. 3 years later, my mother had to make that call. My father was tested, he had the mutation. There were many sleepless nights spent discussing the implications for me and being tested. They let me have the choice. In true 17 year old fashion- I said- um No, thanks, can I go out with my friends? I didn't want to know. I wanted to live, I didn't want to be shackled with the burden of knowing that I was going to die of some rare painful cancer. From what I saw with my dad and brother- knowing vs. not knowing didn't change the outcome one darn bit. That harsh reality came crashing down around me in 2008 when my 3 year old was diagnosed with adrenal cancer. I thought for sure she had a brain tumor. I had gotten a degree in molcular biology, I studied genetics- we talked about Li Fraumeni Syndrome- I never processed that adrenocortical cancers were one of the main syndrome cancers. I had done my research. Before it was Li Fraumeni Syndrome, it was called SBLA- but not in any circles that I was in. It was a wikipedia article that I stumbled on when I was looking up adrenal hyperplasia that brought that to light. It happened to be the day before my son's surgeon called with a referral to an endocrinologist for his pancreas injury-I asked her about my daughter's symptoms and told her our family cancer history and she gave Lily a referral to endocrinology too. This after 2 pediatricians told me not to worry about precocious puberty in a 3 year old- it could happen.

So I called the doctors that studied my family in the 90's and I asked what to do for my other kids, I wanted to know the benefits of testing them. They were supportive and helpful and I also learned about an upcoming conference the following year. It had been decades, but my assumption was this was so rare- there weren't very many other families out there. I wanted to be there. I wanted to meet the others. I wanted to see if they learned to laugh through the tears like my family does- because sometimes laughter is the only medicine.  I wanted to see what progress had been made and where things stood. I wanted hope that my children wouldn't have to watch me die from cancer and I sure as heck don't want to see any of them go through it over and over. At this conference I met others who wanted, like me- to help support each other and work together to find better treatments, screening and ultimately a cure. We are tired of watching our families suffer. We want to help bring together all the different facets of knowledge, research, and experience with this syndrome. We want to be the link the connects the disease to the cure. We are that link. It will take time, and sometimes more time than those with LFS are given. I was so saddened to hear that a lady I met at the conference recently passed. It was agonizing to lose a friend in December who I met because of this disease. But these were two amazing, strong women. 2 women who brought so much love and light to those around them and who both had so much more living to do, but couldn't because of LFS. Since we started in 2009, we have hit lots of bumps and several new cancers in our group. That is the nature of the beast. But through people with Li Fraumeni Syndrome is a better understanding of cancer and through this understanding will be a cure!  If you are interested in donating time to a great cause- check out our support groups at Facebook- we welcome help with open arms. There is one for those with LFS and one for Friends and Family.  But most of all I have to thank my monkeys and my husband who have dealt with a pretty messy house and a scattered mom- but do so gracefully so that I can try to help create something that will do so much good.

https://www.facebook.com/groups/90503981891/