Friday Night Special

This is what I call John. I know it’s not appropriate to poke fun. He has been going to the hospital every weekend for a new symptom and then we come home with two new prescriptions.

He got home Monday and we had the visiting nurse come. She came last night and this morning and said he was doing fine. No fever, good coloring and lungs were clear….today he was fine but started to get nauseated and then vomiting phlegm. His sister came and we called Tufts. We told them we would take him to the local hospital to get checked out. They gave us the ok.

Izzy heard this and started to cry. She is understanding more and more about what is going on. I have to tell the girls this weekend. She wants to spend the weekend with him. She wants her father.

His sister said they will be transporting him to Tufts because his lungs are 1/3 filled with liquid. She said by the time she got to the ER, which is 10 minutes away, his lungs sounded like they were rattling. Can he ever catch a break? How does this happen so quickly? What does this mean?

I am hoping he will improve and be home soon….only time will tell I guess.

Izzy has tomorrow off from school as well as Monday so there will be juggling and wondering what to do in terms of going to the hospital.

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Hello? is there anyone out there?

Anyone?
Is there a woman out there who’s husband has cancer?
Is there a woman out there with two small kids?

Is there a woman out there who is struggling to keep it all together, who suddenly lives moment to moment and glimpses of growing old with her husband is fading?

Is there a woman out there that holds her oldest child who can’t stop crying and you don’t stop it because you are crying too? You try to soothe your child but how can you when you don’t have the words?

Is there a woman out there who is so tired and runs on automatic?

I want to have someone close by who is going through this so I can lean on this person and she can lean on me. I want to drink coffee with her and watch our kids play. I want to call her in my darkest time and cry and she won’t have to say anything because she knows-she did the same with me and I understood. I want to have someone close by who will drop everything to help me out and she knows I would do the same.

Loneliness is new to me. It’s very rare I get lonely. The first time I felt it after John was diagnosed, it paralyzed me and I couldn’t breathe for a few minutes and I had to sit down. It’s so raw.

So we became THAT family

You know, the family with the husband/father with cancer?

Have you ever taken a friend to see your old neighborhood? Did you drive by your house and point to the houses of where all your childhood friends lived? Was there one where you pointed to and said “So and So lived here, his mother died.” John did. I saw THAT house and wondered what happened to THAT family.

I was also THAT family too. My father died when I was 12. My sister was 16 and my brother 20. I think our blow was different because his death was fast and my parents were divorced for 10 years. We lived in San Francisco while my father and our stepfamily lived in San Diego. My friends only saw him once, briefly but he was never present to them so they didn’t treat us any different.

We live in a condo community. We really weighed our options on where to settle down. It took a lot of thought but we did it. We wanted our children to grow up in a secure neighborhood with lots of children to play with. We moved in 2 days after Christmas last year. We worked hard to create a community here. We had an Easter Egg hunt and a Memorial Day cookout. Summer was filled with kids playing outside with each other everyday from morning to night. We would all chip in to give them dinner so we didn’t have to pull them away from each other. There would be lunch served sometimes, snacks would appear from some house and popsicles were never ending. We would have themed dinners and order pizzas. Toys here are shared. Parents would gather with wine and we would drink and talk and snack and laugh. We started planning our Halloween party. How did we get this lucky?

When John was in the hospital the first time, I didn’t say anything. KitKat’s 4th birthday  was celebrated with a cake and the neighborhood kids gathered around singing to her. No one noticed. The second time John was in the hospital, It was Izzy’s 7th birthday and some neighbors knew but again, a birthday cake was made and we celebrated with Izzy’s gaining a year but losing her first front tooth.

The third time, I tried to keep up  a normalcy for us but It really sucks to be THAT family.  I have pretty much stopped going out and talking to our neighbors because, although I know they mean well and they are very concerned,  I am tired of the head tilt, the understanding nod and the uncomfortable eye contact. I can’t have people come up and ask “How’s John?” in front of the children and then having my children stop and watch because more often than not, I cry. It’s not fair for them to want to run around and then have to worry about me.

When John is home, I see neighbors looking at him at the corner of their eye. THAT look. THAT sideways glance. They won’t go up and talk to him. I understand and they don’t have too.

Just this weekend, the kids were over at a neighbor’s house and I got THAT question with all eyes on me. Do I really have to quit with the eye contact too??

Oh how I wanted a last blast Summer cookout with tons of food and drink! How I want to plan this Halloween party with trips to the store to buy scary decorations, how I want to meet up with the moms and discuss the latest pinterest finds and do Autumn projects with all the children here…but then I think…if I do all these things, then what kind of wife and mother am I to “forget”? What kind of person does that make me, to get excited about these things while my husband is dying?

So I stay in the house and avoid my neighbors. I feel like I can’t win.

So when you drive by my house and you point. Yes, we are THAT family. Don’t forget though, that we are a family that loves to play board games, eat pancakes every Saturday morning, mimic eachother until we explode with laughter and love to be with one another. We jinx eachother, tease eachother and fight with eachother.

We love eachother.

We’re still us.

It was twenty years ago today

20 years ago today, I was in my apartment listening to my roommate beg to go to Ryles Jazz Club to see a band. She was under age but they had a 19 and up night and she wanted to go. I had been living in Boston for a few months and was actually ready to move back to California, so I was all done trying to meet people or go out. An hour and a half later, she told me she would buy me a beer and that pretty much sealed the deal. I remember I wore a pumpkin colored sweater, jeans and earrings that matched my sweater. I remember brushing my hair and doing my make up because for some reason, I knew it would matter.

When I walked in, I paid the cover fee and as I waited for my roommate to pay her way, I looked at the drummer and everything stopped for a moment and I said “Oh my god, there’s my husband”.  We sat down to listen and 30 minutes later they took a break. I figured he would just go to the bar or go outside but instead this drummer came over to me straight away with his hand up for me to shake. He told me his name was John and that is how we met.
I think about how we met a lot-even more so because we are marking an important anniversary. It was such a magical and fun night. Our first year was really amazing. I wish I could say that our whole life together was wonderful but really, it’s been quite a journey. I feel like we were finally in a good place these past three years and even then there have been so many bumps and twists and turns.
What I can say is this-I have two amazing children. They are the most fascinating people I have ever met. They are people that will change this world and are already making it better and I don’t say that lightly…so how could I think about if I never went out that night? How can I think about the first time we broke up, that was it? I just wish I could erase all those awful arguments, silent treatments and angry moments-those ones you think don’t count…but they do.

How do I love thee?

Let me count the ways
I love thee to change your fentanyl patch every 3 days
Zofran, Dilauded, chlorpromazine
For the ends of Ferrous sulfate, thorazine,
I love thee to the new pills of everydays
Most quiet need, by bathing you and using a syringe
I love thee freely, as you use Lasix to pee
I love thee purely, as the stool softeners work surely
I love thee with the prescriptions put to use
In your new briefs, and yet another pill
I love thee even with your mind you seem to sometime lose
With all my lost sleep. I love thee still,
Smiles, tears, of all my life; and even with with questions unanswered
I shall but hope we will win this awful fight with cancer
Ode to Poet’s Day which was yesterday and I couldn’t post because John had to go back to the hospital to get hydrated and get ready for a new PICC line.

Once upon a time

there were two princesses.

One is seven. She loves pink and sparkly things. She eats loads of chocolate, vanilla bean scones and popsicles. She is so outgoing and loves to play that she makes friends easily. Her smile lights up a room and she has the most beautiful blue eyes or ocean eyes as her mother calls them (which she corrects and says beach eyes because of the brown around her pupils). She is sensitive, so much so that she cries when she sees others cry but that doesn’t make her weak, it makes her powerful.

The other is four. She loves purple. She wears her purple tutu dresses everyday. She loves popcorn, cereal and most things salty. She is independent but cuddly and very precise. She is sure of herself and says she will always win. She has the most beautiful chocolate eyes. She loves strongly and is so fierce. She is funny and loves to make people laugh. Her mother learns so much from her strength.

Then their father was diagnosed with cancer.

What they don’t know just yet is this is hereditary. What they don’t know is that there is a team of doctors that are going to work on a screening for them so they will be monitored for the rest of their lives. What they don’t know is that their mother is behind this and will make sure that this screening happens soon so they can live long and she can watch them become amazing women. What they don’t know is that they aren’t just princesses anymore. They are princess warriors.

October 29, 2014 my 46 year old husband died of Peritoneal Mesothelioma which we found out is genetic. We have two daughters. Bear with me as I write my rants, raves and thoughts.