Monday, December 30, 2013

Believing in Memories

Today is my last chemo of the year. I'm going into my fourth chemo and unsure how many treatments next year might hold. I heard from friends that the 3rd is usually the worst, so I was dreading it and planned on feeling down and out for the holidays. I definitely felt more tired, but the holidays were upon us- I can't say I was any worse off than anyone else. For me the 3rd round was the toughest so far emotionally. I can definitely attribute that to the holidays and to the chemo.

It's exhausting. The waiting, the hoping, the wanting. I'm not talking about presents. The gift I wanted most could not be wrapped and put under the tree.  Yet it is also a time for reflection. I remembered the years Bob and Dad were sick and tried to think back to what gifts were given and received and I could only think of one. The last Christmas with dad I gave him a copy of the Polar Express. We sat and read it. It was ultimately a gift for me. A gift that I cherished, the gift of a memory. After losing Bob, I knew there was nothing I could give dad that would really matter. Things are things. They can make us more comfortable and bring us smiles, but many times this can be accomplished in non expensive ways. It was my way of saying that I believed. That I believed in Christmas, that I believed in hope and that I believed in him.

I spend a lot of time believing with all my heart these days. Believing I can try and make a difference. Believing that chemo is going to work. Believing I am on the path I am meant to be on and it is not finished quite yet.

It has been a year of loss. My mom's health has not been great and she's had to make some tough choices this year. Some choices were out of her control- as many end up being for us. Sometimes it's hard not to get bitter when this happens, yet sometimes it makes the path clearer.  My mom is at a point in her life where she needs to be around family- both emotionally and physically. And we, being the bulk of her family are on a pricey island in the middle of the pacific. On paper it seems like a perfect retirement- yet rationally - living in paradise comes at many costs.  The other option for her was to move near her brothers, which put her further from us- but nearer support. And then just weeks away from her big move- we find out that my aunt has pancreatic cancer and that my cancer has metastasized.  There is nothing like cancer to put your life in perspective.

Just like that, there is nothing more important than family and yet neither one of us is in any position to help or care for the other. These are the times when tough calls are made and you just have to get through. So I stopped in Denver to see her, so she could see that I was Ok. So I could see that she was Ok. I can't imagine the sense of loss she has been feeling for so long.  I can't believe where we are. It wasn't supposed to be like this.  Yet here it is and this is what it is. So you pick up the pieces that mean the most and you move on. Sometimes all you can carry with you are memories.

This Christmas was hard, knowing she was going through so many changes and I couldn't help. Stupid cancer. This was the year we talked about going home for the holidays. Yet suddenly we were in no position to make that happen. Then it hit me, home wasn't really there anymore. And yet I had my littlest elves looking for reindeer in the sky and surrounding me in belief. I have to believe we are all on this path for a reason and everything will work out. They were there reminding me of my purpose. I remember when we moved to Colorado- how we hated it at first. We had known no home but Ohio. And then Colorado became the only home we could imagine. And to think it's been 15 years since I've lived there, but I still think of it as home. And I think what makes it home are the memories.  And so when my kids asked what I wanted for Christmas- that is what I wanted. I didn't want them to remember it as the year mom was sick. I wanted to give them happy Memories. Memories for them. Memories for me- so when the road gets rough- they can believe it will be Ok because they will remember- it was OK. I think we succeeded. We went to the Nutcracker, and to see Elf and did the Jingle Rock run through the town lights. I watched the girls perform Christmas songs and sing with residents of a retirement community.  I helped my son give to the Angel Tree. We made cookies and visited with friends but most importantly we made memories. 

Tuesday, December 24, 2013

A Grinchy Cancer Kinda Christmas

My cousin recently talked about how much she dislikes all things Christmas and at first I was stunned. But then I sat back and thought about it. All she's ever know were cancer kinds of Christmases. For most of us, Christmas spirit is driven by magical memories dusted throughout our past. We would have Christmas Eve at Grandma Connolly's- opening presents in rooms filled with raucous laughter and cheer, tables lined with food-oh how we'd feast, feast, feast. Drafty cold sneaking in under the front door as we laid on the floor full and happy, trying out our new goods. The TV or radio blaring- elevating the volume of the entire festivity. Oh the Noise noise noise.

The first cancer Christmas- was long before I was born. My dad was only 8- and his family celebrated just months after losing their patriarch. My first cancer Christmas- you could feel the change in the atmosphere- the adults talked in hushed whispers about whether or not they should take my aunt to the hospital against her wishes. I was 10. She sat in the recliner, a shadow of her animated personality. She was always the first to play with us- emptying the cabinets, upending chairs so we could play grocery store. She always made the onion dip. And hated to waste food. She knew social convention dictated that no one take the last piece of food so she would cut the last piece in half and when someone would take it- she would cut the last piece in half until the remaining piece was a crumb much too small for other who's mouses. But as a child- the magic still swirled for I did not know that would be our last Christmas together.

It was shortly after that my cousin lost her Christmas magic- I think she was much too young to even remember it. I always loved Christmas- liked it a whole lot- but my poor cousin she did not like Christmas no, she did not. Her Christmas memories tainted with being shuffled from house to house while her brother or mother were in the hospital and late nights on the couch- trying to find the magic with a brother who felt like a seasick crocodile. Those are Cancer kinda Christmases- knowing nothing material could ever take the place of those memories and yet those memories are like a house full of unwashed socks, those memories are full of gunk. Cancer Kind of Christmases- stink, stank, stunk.

And yet you never know if that Christmas will be the last, so somehow you muddle through. A few years later- I was the the one shuffling from house to house- my brother the one feeling all grinchy. The cold tends to surround you- it comes from within. Not knowing what gift to give when the only gift you want is more time. We used to lay under the tree and watch the lights twinkle off the ornaments. We'd bundle up and drive around looking at Christmas lights. We decorated cookies- had Christmas programs. Yet somewhere between that first cancer Christmas and this one- you learn to forget. You choose the happy memories and stuff the rest up the chimbley. And you puzzle and puzzle til your puzzler is sore at how those memories used to be so much more.

The year my dad was sick came as a shock. We had done this drill before. I knew where that train was heading and I did not like it one little bit. Yet my dad would smile and make some crazy joke and get some awful, wonderful idea and we'd end up hours away looking for a tree in some forest. It had to be the biggest. It had to be the best. And when we found it- I would sit in the back of the van, making sure the emblem of our Christmas spirit did not end up dumped on the road somewhere. And somehow it survived and spent the next 2 weeks being attacked repeatedly by our cat. Nightly we would hear the  jingle of ornaments and moments later the crash of the tree. And we would ask her- why are you attacking our christmas tree, why? I think dad finally anchored the thing to the wall. That was the Christmas I knew the gift we all wanted could not be wrapped with ribbons or labeled with tags. The gift we wished for could not be packaged, or boxed, or bagged.

The next Christmas had more holes than we could fill. Yet somehow we went through the motions.  Sometimes you have to pull out the snoof and the fuzzles, the tringlers and trappings! We changed some of the traditions. Sometimes in order to honor a memory- you just have to leave it. You hope that some Christmas your heart won't feel so tight and you wait patiently for the bright morning light. For me that bright morning light was Christmas with my little whos.

When your little who has the grinchies for Christmas- its hard to compare to the years before when you realize you had not a care. I remember just praying that Lily would be home for Christmas and being so exhausted that the thought of buying or wrapping presents would drive me to tears. Yet I did not want them to wake up and to cry boo hoo and I was grateful just to have her in her own bed that night.

It seems every year we adopt a new tradition. I was having a particularly Grinchy day- we had an hour between dropping the girls at a performance and meeting friends for dinner so I asked Bella and Phillip what they wanted to do. Bella wanted to ride the train at the mall with me and Phillip wanted to pick out gifts for a child on the Angel Tree. In my rush to get everyone every where- I had forgotten that we do the Angel Tree every year. It was in that moment that I felt the spirit of giving from my child and I think my heart grew 3 sizes.

Of course this year the Grinch is watching our who family closely with a sour grinchy frown.  I smile and spend time driving all over town. And they sing sing sing sing. These memories are the ones I want them to cherish, for they are magic to me. For this year we have hands to grasp. So I will get up at 3am with Lily and watch Once Upon a Christmas because she is so excited she just can't wait. And I will stop for a second and let Bella measure my wrist for the 30th time for a Christmas present she is trying to make. And I will let Kiera help wrap- which normally drives me insane- but she does a good job even if it's all left handed. And we will make the teenager watch movies with us- because although he hates it now- I know he will appreciate it later. And I know Christmas will come whether I find the right package or present because the present is now and we are all in it.

Thursday, December 5, 2013

Season of Gifts

It's not that I don't have a lot to say, it's just that there is so much more to do and so little energy left at the end of the day. Or dinner time. Sometimes by noon. Or 7 am. Sometimes at 6 am I go back to bed. Somedays I feel good. And by good- I mean I extend my radius away from a bathroom by many yards. Then on these days I tend to overdo it. The following days are tough. But I can not complain. I expected so much worse and I know how bad it can get so I am choosing to enjoy the not so awfulness of it.

People say the damnedest things to you. I know there are books and blogs and lists devoted entirely to the subject of stupid sh!$ people say to you when you have cancer. I have had the honor of  hearing some doozies lately and continue to let it roll off my slightly stubbled bald head.  I think I will make a checklist and send it out to my friends and family- maybe a bingo card. Perhaps the prize will be an extra hour of hydration at the chemo bay or an extra dose of zofran. If you impress me- maybe some ativan. The past week was filled with running around and thankfully feeling ok to do it. Not only preparing for Thanksgiving, Phil's birthday but Christmas as well because I never know when my feeling ok luck will run out.

My mailman honks when he has a package to drop off. I have been doing a lot of online shopping.  A couple days ago was the first time I ventured out to grab the package. I don't wear wigs or hats or anything around the house. More often than not I forget them when I go out. If it's sunny, I try to remember- it would be my luck to get skin cancer on my cranium. The mailman looks at me agape- Did you cut your hair for a reason? Now mind you- I love our mailman- he is a sweet man who generally walks packages to the back door if I don't answer the honk. SO I tell him, I cut it because I am going through chemo and it was falling out. So you're in remission then? No I am in chemo. PEOPLE!! REMISSION means no evidence of disease. It's gone, they don't see it-nada, zilch, zero. It means all signs and symptoms of cancer have disappeared. Remission is a feely buzz word that people want to use with cancer because cancer is scary and means pain and suffering. When someone is standing before you bald- they are not in remission. People who have actually had or lived with cancer fear the word remission - it may as well be called the condition that must not be named for letting it part your lips may bait the nasty cancer gods to spite you.

Later that afternoon- I run to Safeway to get items needed for upcoming feast of Thanksgiving. A woman literally is chasing after me- which is quite amusing considering my pace is snailish at best. What treatment are you on? She asks as she steps in front of my cart. Herceptin, Pertuzumab and Abraxane I tell her. Because apparently a bald head is like a pregnant Belly- your biology becomes fair game for chit chat. No. what NUMBER? she chides me. I sigh. Two. I've only had two. Oh don't worry, it will grow back in! She cheers and starts running her fingers through her short red hair- mine came in gray though. Because that was what I was worried about- not how I'm going to find the effort to make thanksgiving side dishes while piecing together tutus for a drama fundraiser, while wondering what I could possibly get my better but not balder other half for his birthday while online shopping to make sure Christmas is merry and jolly here. Oh Don't worry- it should normalize- I cheer back- My daughter's came back in platinum after her chemo when she was 3, but its dark brown now. That's what my doctor said too and she bolts for the wine aisle. That reminds me- I need wine. But I'll come back for it.

Thanksgiving was amazing with many thanks to my sister and brother in law. I think we are all relishing in the availability and choas of family. It's a luxury we don't often have and really we are so grateful. I made 3 side dishes for dinner and it took me as long as the entire dinner usually does. The best way I can describe it it my brain seems to be wrapped in bubble wrap. I'm a little spacey, a little foggy and my memory is crap. Add on the shakes and minor peripheral neuropathy(when your nerves go on strike due to chemo) - cooking presents a few new challenges. The other night for Phil's birthday we had trebuchet gorgonzola stuffed mushrooms. I prepared everything without even until taking them out of the oven when they became steaming little missiles due to an inapporopriately timed muscle weakeness something or other episode. Fortunately no chemo patients or children were harmed in the making of the birthday dinner or dessert. But for the record- when trying to recreate a yummy butterscotch pudding- egg nog is not a good substitute for whole milk.

Priorities have shifted in this house again. And we lead a pretty centered existence. We don't take each other or time for granted and we do let the occasional little thing get our goat- but all in all we try to do our best. Usually I wait to put up Xmas decorations until after Phil's birthday. Yet on his birthday, he wakes up and says- lets do the tree today. And I say- our tree is puny and all of our glamorous mounds of ornaments won't fit. So he says to throw on clothes- we'll go get a tree. And we stop at Kmart because sometimes I luck out there- because everyone goes to Target or Walmart.  They had trees 50% off.  Our luck isn't always so good- so we snatched that tree and brought her home. And that is how amazing my guy is. For his birthday- he wanted me to be happy. And really what can you give a wookie when he already has a comb? Football and Beer. And a wife who smiles everytime she sees the shiny new tree, with room for this year's new ornaments. He is right- when mom is happy, everyone is happy.

Weekends are packed from now until Christmas with work, performances and obligations and a smattering of fun. Every year I say I'm going to take the girls to the Nutcracker and fortunately this year, one of our drama friends is in a production at her school. Check. We have yet to make it down town for the Christmas lights- so when a friend started a group to do the Jingle Rock Run to benefit Make a Wish- yep I signed us up.  Because a week after chemo #3 sounds like a good time as any to do a 5k. It's now or never. I'm not running. Unless there's a fire downtown in the middle of the Jingle Rock Run or immediate child endangerment, but hopefully we will see the lights while giving back to one of our favorite organizations. So check. And check it out if you are interested!! You can Pledge any one of our Mallory clan...we'll all be there! Jingle Rock Run 2013
Lily Mallory Jingle Rock Run Pledge Page
Jen Mallory Jingle Rock Run Pledge Page

Another friend is in a performance of Elf downtown- can.not. miss that!  Holy theatre fun. I have to say I'm enjoying it- and other than the driving to town and potential crowds of people- sitting and watching performances is just my speed. The activity of that alone wipes me out.  Phil keeps asking me what I want for Christmas. What I want can't be wrapped unless it's those arms around me for a long long time. It seems ridiculous to ask for things. All I want is memories and to share them with my monkeys for a long time to come, so far we are making good progress on that!

Monday the 9th is Round 3 of Chemo. It is time to talk scans to see if it's working. I'm hopeful. I feel good, my cough has gone away and the aches and pains have decreased.  We talked about 6 rounds of chemo, yet it seems to be that if it's working there could be more. An infinite number. It's not appealing yet at the same time so much more appealing than the alternative. It's all about perspective. I'm trying to keep mine. And with the hustle and bustle of the season- I have constant reminders of the gifts I have been given- the gifts that I want and the gifts I hope to share for years to come.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)