Shortly before Christmas, the funk came to Hawaii. The only kind of cold we get here- cold viruses. You'll remember Lily and the burn/puking episode? Lily and Bella like to puke as colds come on. I think it's because they sniffle and who's stomach likes that junk inside? Yuck. Well Phillip has perpetual sniffles- which we have come to realize is part and parcel of wrestling. I really try not to think about the mats and dirty bodies and MRSA- we just shoo him into the shower as fast as humanly possible. Then Kiera gets it. Kiera rarely gets sick- so we are going to blame it on the crazy flora and fauna of high school. She has a hand washing issue- meaning OCD- lots and lots of hand washing. She scrubs in before she preps food or eats. It's one of those habits I can't really discourage. But we do talk about the feelings behind it-part worrying she will get me sick- or others who are immunocompromised and part just really not liking germs. Right around Christmas Phil got it. That left me and Bella.
Running ragged around Christmas is normal. I knew it was a matter of time. Then of course we make it through break and a full week of back to school(thankfully- it was a chemo week and I was hit particularly hard this go around with side effects- nothing unbearable-but lay in bed and hope it gets better kinda thing.) Lily wakes me up around midnight and tells me Bella is going to be sick. I get Bella and emphasize that she is old enough to find her way to the bathroom if she is going to be sick. Bella is a pretty bad puker- you could be holding a bucket up to her mouth and she's find a way around it. I "got spoiled" with Lily and chemo- talk about a crash course in puking etiquette. The other girls- fortunately don't puke much but when they do- they like to make a production of it.
I go to bleach down the toilet- as I do with any impending puke sesh. Nothing like hovering over a filthy toilet to speed things along or compound matters. The toilet is clogged. Um- yeah Lily tells me- it's been like that. Bella is a funny shade of green. I grab the emesis basis we keep stock of and sit her on the floor- make it IN the bucket - and tend to the clog. With a colorful flora of words just escaping from my mouth. I'm tired of cancer and being sick and sickness and sickness all around me and not enough energy to do a damn thing about it. Phil is so exhausted from his ridiculously ridiculous work schedule, his snoring pattern hasn't changed despite the flurry of activity less than 15 feet from him. Which only intensifies my anger. Which immediately triggers the remnants of Catholic Guilt. Help! Help. Sure Jen accept help. Be better at accepting help. Unfortunately, I have done this living with cancer a few times- the living with grief thing- the life thing, to know that people get tired of your loss, your sickness, your grief. Everything gets back to normal and you have to settle back in. Everyone has their battles. You are not special. And some need to feel more special during it than others. You see celebrities day in and day out with cancer, dying of cancer, with illness- doing it on their terms, doing it gracefully- doing it quietly because the only thing worse than pity sometimes is when people get tired of your pain or that they might see and feel your pain. For every one celebrity there are thousands without millions of followers and well wishers, just trying to get through. Gracefully. Anonymously. Watching the world go on around you. Watching the parties and the celebrations. Feeling like they are buried in sickness. In that moment I felt buried in sickness.
I realize I am falling down tired tired and on this bizarre sick night autopilot and I am unfortunately ranting. Out. Loud. After my tantrum flushes away the negative feelings- its time to put on the big girl panties and do my job. Bella is mid puke and there are splashes on the carpet and the wall. Really kid? Lily interjects- she did get it in the bucket- it just splashed out. And I see she is trying to help and in her 10 year old way observing me and I was just a horrible horrible example. It was not the wake up call I needed. But it was real. I don't want to be the bitter mean person. It's hard not to let that gut reaction take over. I get Bella cleaned up and tackle the carpet and wall. Sometimes people crack.
I explain that I was just really tired and that I am not mad at them- just that sometimes I get tired of sickness. It's not their fault, people get sick and then you just have to deal with it. Nobody wants to be sick. It's your body's way of getting your attention. I tell them tomorrow- we are all going to lay on the couch and just rest. And we did. I washed my hands- a lot. I sanitized common surfaces.
I get Bella back to school the next day- no fever, no puking- just the stupid cough that everyone else has had for a month. I am so over the hacking. I feed them mucinex like tic tacs and worry its something more. I worry that I will get it. I worry that I won't get it- because lord knows my immune system is not top notch right now- it's a weird feeling to think not getting sick would be an indication of something not good. And then I spend an entire day doubled over with nausea. And then my head starts pounding. I try not to feel bitter. I try not to feel entitled. But every now and again enough is a flipping enough. SO I take a day and I go sit at the beach. I watch the waves and remind myself that as they beat against the rocks- the rocks get worn into sand. The sand ebbs and flows with the waves. Changes with the environment as the environment changes it. That night the coughing starts.
I've been really really down lately. Overwhelmed. It's not about having someone fix it for me- its not about business as usual or this is life. Somehow we did a complete 180 and are where we were before cancer and the problem is I have cancer. Phil's work is so obnoxious I can't even. Yet that same work provides me with the healthcare that keeps me alive. SO we adjust to the pounding of the waves. I triage activities left and right. Unable to spare the time or energy and when you do that - you lose friends. It just happens. It makes me sad. And then someone will check in on me. And I am reminded that I have lots of friends and lots of people who care. Some of those people are little and live in my house. Kiera goes out of her way to hang with me. I'm not the sort of person who thinks parents and non adult kids should be friends- but I like her. I really like her. Except for about a week out of the month. And then all bets are off. Although they drive me crazy with their age appropriate nonsense- I like my kids. Despite all that we have going on- we are doing ok. And just like a cold reminds you to take better care of yourself- sometimes sadness reminds you to take better care of your heart. And sometimes your partner in crime wraps themselves around you because they see the cracks and they are currently holding so many cracked surfaces together they missed the beginning of this- but you- you are their priority in that minute. For those lonely dark hours they even if in their sleep know that you need them to hold the pieces together and they do. And you are so unbelievably grateful you wouldn't trade that for any of the notoriety, riches and in those times there is no bitter cold.
In October 2008, 3 year old Lily was diagnosed with 2 types of Cancer. In 2012 her mom was diagnosed with 2 types of cancer. Here are the current updates on Lily's family, their tumors, treatment and living with Li Fraumeni Syndrome.
Wednesday, January 20, 2016
Monday, January 18, 2016
Putting Away Christmas .
I just put Christmas away. Usually by Jan 1, I am ready, ready to free up space and declutter and putting away the Christmas decorations creates that illusion in our small space. Last year Phil put away most of the decorations, I struggled with vertigo. As I went through this year- I noticed things not stored the way I would have or in the order I would have. Yet the decorations were fine. The memories were preserved. The biggest "crisis" came in the form of a singular red ornament I noticed on the tree.
A couple years ago, my mom gave me the last remaining ornament from our original batch as a family. A red glass ornament. It was packaged carefully in tissue paper in a very special decorative box. The ornament didn't get put on the tree. It sat on my desk with a picture of our family by the tree at my grandma's, the last Christmas before the Connolly side was ravaged by cancers. Last year a pewter ornament with my grandma's picture, rounded out the display. As I work, I can sit back and they look down and remind me what I am fighting for.
This year, the kids did great with the tree. Our new couch freed up enough space for it to be in the living room. I was so excited to be able to lay on the couch each night with Phil and have the tree there. Kiera took special pride in passing along how the ornaments needed to be balanced and carefully shifting them. Bella danced around with the tree skirt on as an actual skirt. Usual tradition is that they hang ornaments, we reminisce where each on came from and then when they get bored with the tree- or in the next couple of days- I put on the finishing touches. Beads, ribbons, ornaments that unify the eclectic conglomeration of memories dangling from branches. I admire decorated trees, unique themes and matching everything- but I adore our mishmash of ornaments. It is us.
Each year we consult the historical documents(last years christmas photos) to determine whose turn it is to hang the topper. The choice of topper determines the tree's theme- we have a snowman which usually goes with blue ribbons and silver snowflakes. We have an angel that usually goes with creme and gold accents. Phillip has been asking for a star for years and I found one this year that matched some gold ribbon I found last year. The lights were white, which created a problems- there are strict tree rules- Phil likes multicolor lights on the tree. Since he has very little say otherwise- I don't mess with that. The historical documents showed that it was Kiera's turn to hang the topper. She loved the gold star and chose gold and teal accents. SO before we could hang the ornaments- we had to find a way to make the star work. I knew Phil had about 25 other things that needed his attention, but he sat with us trying bulb after bulb, getting the star up to snuff.
I spend an inordinate amount of time "fluffing" the tree to make the branches all lay the way they should after being cooped up for a year in the rafters. Of course there are 2 strands of lights (prelit my A$$) that are not functioning and due to time constraints- we just throw a few more strands in the mix. We finally call in the troops- the entire living room dusted in various colors of glitter. You know it's Christmas when it looks like an angel farted all over everything. Phil carefully unwraps ornaments, I set up the ornament ER- glue, ribbons and extra hangers for whatever crisis might unfold. There is copious ingestion of egg nog. The kids are comparing personal ornaments. I just watch, mostly loving how they interact and share memories. I am saving energy for the "finishing".
But as I look at the tree- I don't want to fix it- I think it's pretty hysterical how Phillip clumped all of his superhero ornaments together. He takes great pride in carefully placing the baby Jesus he made in kindergarten right below the star- his place of honor. Kiera carefully spaces her barbie ornaments. Splashes of purple around the tree are by Lily- dora, barbies, jasmine. The tripler ornament the year she lit the tree. The alex's lemonade stand ornament. Bella is willy nilly. She has the fewest ornaments in her personal box, mostly because she breaks things , but she tells Lily its because she is so much younger, her collection will grow. Someday they will take their ornaments and have their own tree. They ask one by one if its ok to hang my special ornaments. I let them, reserving a few of my favorites.
As Kiera and I finish the tree- light turquoise beads and gold ribbons and snowflakes. I see the red ball hanging there. One of the ornaments I used to lay under the tree and make faces into. Phil freezes. Where is the box?? The special box? He has packed up most of the boxes and moved them back to the garage. He grabs a nearby box and a sharpie writing on it: Jen's last family ornament and carefully lays it inside and puts it up on the cabinet. I am mumbling about the box and it's place of honor and I want to display it. The things that ornament has witnessed. A happy family in Ohio. Kids growing. A move to Colorado, several Christmases. Hanging precariously from a 10 foot tree as a crazy cat clawed it's way to the top, toppling the tree. Many of it's brethren were lost that year. The loss. The move to the apartment, a smaller tree. Being left in the box, the sadness too great. A move back to Ohio and a great journey to Hawaii. Part of me feels bad for not letting it hang on the tree. That's what it is supposed to do- but mostly I want to protect it and the memories it holds. And then I realize the memories are mine. Unless I share the stories, they will only be mine. It is time.
SO yesterday. Kiera helped me pack up Christmas. We found the box for the ornament and I shared with her the story. Just like when we took the ornaments out- we took the time to carefully pack them away with a story. How that ornament came to be part of our family. Some of the things it's seen and now it's ours. And as we put away Christmas, I felt better knowing the memory was mine to share.
A couple years ago, my mom gave me the last remaining ornament from our original batch as a family. A red glass ornament. It was packaged carefully in tissue paper in a very special decorative box. The ornament didn't get put on the tree. It sat on my desk with a picture of our family by the tree at my grandma's, the last Christmas before the Connolly side was ravaged by cancers. Last year a pewter ornament with my grandma's picture, rounded out the display. As I work, I can sit back and they look down and remind me what I am fighting for.
This year, the kids did great with the tree. Our new couch freed up enough space for it to be in the living room. I was so excited to be able to lay on the couch each night with Phil and have the tree there. Kiera took special pride in passing along how the ornaments needed to be balanced and carefully shifting them. Bella danced around with the tree skirt on as an actual skirt. Usual tradition is that they hang ornaments, we reminisce where each on came from and then when they get bored with the tree- or in the next couple of days- I put on the finishing touches. Beads, ribbons, ornaments that unify the eclectic conglomeration of memories dangling from branches. I admire decorated trees, unique themes and matching everything- but I adore our mishmash of ornaments. It is us.
Each year we consult the historical documents(last years christmas photos) to determine whose turn it is to hang the topper. The choice of topper determines the tree's theme- we have a snowman which usually goes with blue ribbons and silver snowflakes. We have an angel that usually goes with creme and gold accents. Phillip has been asking for a star for years and I found one this year that matched some gold ribbon I found last year. The lights were white, which created a problems- there are strict tree rules- Phil likes multicolor lights on the tree. Since he has very little say otherwise- I don't mess with that. The historical documents showed that it was Kiera's turn to hang the topper. She loved the gold star and chose gold and teal accents. SO before we could hang the ornaments- we had to find a way to make the star work. I knew Phil had about 25 other things that needed his attention, but he sat with us trying bulb after bulb, getting the star up to snuff.
I spend an inordinate amount of time "fluffing" the tree to make the branches all lay the way they should after being cooped up for a year in the rafters. Of course there are 2 strands of lights (prelit my A$$) that are not functioning and due to time constraints- we just throw a few more strands in the mix. We finally call in the troops- the entire living room dusted in various colors of glitter. You know it's Christmas when it looks like an angel farted all over everything. Phil carefully unwraps ornaments, I set up the ornament ER- glue, ribbons and extra hangers for whatever crisis might unfold. There is copious ingestion of egg nog. The kids are comparing personal ornaments. I just watch, mostly loving how they interact and share memories. I am saving energy for the "finishing".
But as I look at the tree- I don't want to fix it- I think it's pretty hysterical how Phillip clumped all of his superhero ornaments together. He takes great pride in carefully placing the baby Jesus he made in kindergarten right below the star- his place of honor. Kiera carefully spaces her barbie ornaments. Splashes of purple around the tree are by Lily- dora, barbies, jasmine. The tripler ornament the year she lit the tree. The alex's lemonade stand ornament. Bella is willy nilly. She has the fewest ornaments in her personal box, mostly because she breaks things , but she tells Lily its because she is so much younger, her collection will grow. Someday they will take their ornaments and have their own tree. They ask one by one if its ok to hang my special ornaments. I let them, reserving a few of my favorites.
As Kiera and I finish the tree- light turquoise beads and gold ribbons and snowflakes. I see the red ball hanging there. One of the ornaments I used to lay under the tree and make faces into. Phil freezes. Where is the box?? The special box? He has packed up most of the boxes and moved them back to the garage. He grabs a nearby box and a sharpie writing on it: Jen's last family ornament and carefully lays it inside and puts it up on the cabinet. I am mumbling about the box and it's place of honor and I want to display it. The things that ornament has witnessed. A happy family in Ohio. Kids growing. A move to Colorado, several Christmases. Hanging precariously from a 10 foot tree as a crazy cat clawed it's way to the top, toppling the tree. Many of it's brethren were lost that year. The loss. The move to the apartment, a smaller tree. Being left in the box, the sadness too great. A move back to Ohio and a great journey to Hawaii. Part of me feels bad for not letting it hang on the tree. That's what it is supposed to do- but mostly I want to protect it and the memories it holds. And then I realize the memories are mine. Unless I share the stories, they will only be mine. It is time.
SO yesterday. Kiera helped me pack up Christmas. We found the box for the ornament and I shared with her the story. Just like when we took the ornaments out- we took the time to carefully pack them away with a story. How that ornament came to be part of our family. Some of the things it's seen and now it's ours. And as we put away Christmas, I felt better knowing the memory was mine to share.