imageWell it’s been a strange two weeks. I always approach the “holiday” season with trepidation. All that ho, ho, hoeing and merriment can ring a little hollow for me. I know many see it as the season of hope but I worry it is the season of disappointment for so many. Ironically it is Tim’s favorite season and I have to work hard not to crush his joy when he starts in with the Christmas music on Thanksgiving day, sigh. He suggested I title my blog today with my favorite Christmas song to try to move me a little out of my seasonal melancholy. I haven’t always been this way. In fact I have some funny memories of working as a teenager at Grover Cronin’s department store on  the day before Christmas. Now before you judge, remember that it was a long time ago in a very different world in the early 70’s. The store buyers in each department would put booze in the stock rooms as a “gift” to the underlings. We would sneak back for a shot of brandy or what ever concoction was back there between waiting on the last-minute customers that forgot it was Christmas and desperately needed to purchase something before the 5:30 closing. One disastrous Christmas I was in gift wrap–that was not good. So not good. More often I was assigned to the “notions” department where all hands were needed on deck–of course in between nips in the back room. It was hilarious, kind of like the movie “Bad Santa”.

My favorite Christmas was freshman year of college when my parents gave me a pair  of shiny new Hyde ice skates. Being the youngest of 5 kids I seldom had anything “new,” especially not ice skates or winter coats. My mom made a lot of my clothes herself. To me it was epic.

But over the years my sense of merriment was tempered by the crass commercialism and cheesy crap that was being pedaled.  A few weeks ago I stopped off at TJ Maxx—-I walked around the store and felt bluer and bluer. Tacky candy and chocolates, cheap and gaudy decorations made in  China, ugly sweaters–yuck!! I left without purchasing anything.

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You might think this has something to do with my mom dying on Christmas morning 4 years ago. That was the one time I thought it pretty awesome that this most religious lady bowed out on the birthday of her redeemer. The Church looked beautiful, full of red Poinsettias and little white lights and a simple crèche. My mom would have loved that.

This season is also a little harder because the head coconut has been diagnosed with Lupus and has been down for the count for 3 weeks. It is so hard to be sick yourself and have to helplessly watch someone you love more that anything also be sick and suffering. It escapes me why this dark cloud is following us but we will make the best of it and she will get better, with time, no matter what. Just remember that when you ask me how I am, and I say fine, it is to make you feel better. Faking being well is way harder than faking being sick. Just sayin.

Anyway, the holiday season has brought lots of time to socialize and be with friends and family and find happiness in the spaces between the bad stuff. I had a fabulous lunch with my old work-mates, Brunnie, Lori and Bob and got to catch up on all the gossip and remember the old days. Dick phoned in to make sure Bob picked up the tab (he did). It was very fun. Santa and Mrs. Claus checked in too. image

 

 

Next we celebrated Carla’s birthday in the Seaport with Walter and Betsy to round out the year of birthday celebrations together. New Year’s is next.image

 

 

 

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See, people still invite me places despite my grumpiness!

 

As for the latest on my cancer–I am having a liver biopsy on Tuesday. This is to look more closely at my hormone receptor status because cancer can mutate and change–from being estrogen positive to negative. This would affect choice of treatment. Also it will allow for some of the tumor tissue to be banked going forward as we look at different clinical trials. Lastly, they will run a genome panel that looks at the tumor cells and tests for 50 genes that could affect tumor growth and maybe identify specific treatment options directed against the genetic mutation. Research has been focused on creating drugs that can target specific genetic mutations and shut down their ability to keep the tumor alive and growing. Of course there is still no cure in sight, for me. We need much more research for Metastatic Breast Cancer.

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Obviously I have lots of anxiety and no evidence yet that the chemo I am currently taking is working. Dr. Rachel offered to scan me at the 2 month interval rather than wait for 3 months since my tumor markers climbed last week for the first time. So that will occur a few days after Christmas and hopefully give us some answers. If this one isn’t working it will be time to break up and find a new date. A fellow blogger, Jess Tardy couldn’t have said it better:”Bear with me when I get a little weaker and a little more fed up each day of my treatment. Be patient when I don’t snap back to normal as soon as it’s over. Make peace with the fact that as long as I’m above ground, it’s never totally over. Embrace my new goal of just being okay, because whatever normal is I’ll never be it again.”

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Now on to the really fun stuff–our Michigan family arrived for the weekend (minus Gina/Ross and the twins). This really motivated me and Tim to get the holiday decorations up early and get our act together. So it was the Christmas before Christmas. Bridget blew us off the first night because she apparently had somewhere else she needed to be, sniff, Nick Jonas and Liz. image

 

We visited the MFA to check out the Vermeer exhibit–turns out it was the Dutch painters in the “age” of Vermeer so not so much Vermeer!! Must read the fine print. Next up was a visit to see the Boston skyline at sunset from Dorchester Hill and then drinks and dinner with the coconuts in Southie. Turns out the family was so impressed that I was named Bad Ass Chick of the Week that they wanted to form a club and had tee shirts made proclaiming the Badass Chick Club. The shirts are green because I am Irish, and features a fierce-looking cat, well duh. Cathy says she will be happy to tell you how to get one and join the club, no dues! Of course I had to drop my I Phone in the toilet at that particular moment—-bye, bye, sigh.

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Next up was an unseasonably warm day in Newport that included the Cliff Walk, Ocean Drive, drinks outside at my very favorite place, Castle Hill, a tour of The Breakers and dinner at the Cooke House. It was splendid, even without my I Phone. image

 

Lastly I want to leave you with words written by a women my age with terminal cancer that wrote a beautiful article on “The Time I Have Left” in the LA Times named Melinda Welsh: “I have turned my attention to the question How do I best spend the time I have left?

My answer is writing, family and friends, the pleasures of small things.

In her famous essay “Illness as Metaphor,” Susan Sontag wrote about “the night side of life,” a kind of parallel universe that opens up when a person moves from the kingdom of the well into that of the sick. I didn’t know it right away, but I immigrated to that new place the moment I was diagnosed with cancer.

I crossed the boundary into hospitals, clinics, chemo infusion rooms, scanning stations and radiation lobbies. I met my fellow travelers……..the solidarity I feel with the other cancer patients is almost overwhelming. Like me, they probably weren’t aware this “night side” even existed until they arrived in it.

Still, my basic trajectory is unswerving.

I sometimes worry about my ability to exit life with grace and humor. What if I’m bad at suffering?

I understand that my infinitesimally tiny piece in all this is coming to a close. Letting go will be difficult, but death has its own clock. So I will take solace in the idea that, once gone, I may come to occupy a small space in the hearts of the people who loved me most. And perhaps from there, I will be a source of a few simple reminders: Time is limited. Life is miraculous. And we are beautiful.”

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Could not say it any better. Wishing you and your family all the wondrous parts of the season and none of the hollowness. My song is a gorgeous rendition of an old British folk carol “The Holly and The Ivy,”sung by Natalie Cole.

Love,

Barbara and Tim

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

7 comments

  1. Well, being as I am the co-creator of “The Badass Chick Club”, and I just spent 3.5 days with the Badass Chick, let me say that you people who live near her in Boston, and are her friends: you are great people, and as Tim’s sister, I am so appreciative that you are all there for her, as well as for Tim. Being a caregiver can be hard, and although Barb is doing well now, and hopefully will continue to do well, the anxiety of worrying about what comes next can be overwhelming. Thanks for taking good care of both of them.
    If any of you want to be part of the club, those T-shirts are still available!! Just email me at cathycapogna@gmail.com and I will give you the info!! Merry Christmas to everyone, and may we please all just get along, and find peace on Earth!

    Liked by 1 person

  2. I enjoyed reading this, and especially from Eeyore to the end. My husband says I am an Eeyore, and as a metavivor, I also identified with the descriptions of our “other world”, our fear of facing suffering, and using the time we have left to focus on those things which are meaningful to us. All the best this Christmas season. Barbara

    Liked by 1 person

  3. I just don’t know how to put it all in words like you do. Thanks for your honesty, poetry and insight. So sorry about Kelsey. She also seems to have a lot of love around her. I hope this helps to lift her up and keep her strong. Please let her know we are there as apart of the outer circle! All I can say is I love you and Tim and look forward to spending time over the holidays together.🎄❤️🎄

    Liked by 1 person

  4. hey there! hope all is as best as can be and that your holiday season is going really well. Im sorry to hear about the Lupus and I know your family is strong and she will make it through this. My love to her. All is well with me as can be…life is stressful and can suck…ALOTTTT…but im still here kicking and finding my way through the sludge to find my peace and happiness. It has been a while and it was nice to read this particular blog. Hearing your thoughts on the holiday blues and hearing you be strong for Tim because he loves it was nice. I like the holiday but it seems every year the meaning of it gets less and less. Should be about giving to those you love and be about familys getting together but ends up being about going into debt and stressing for no reason…but it will repeat year after year. Merry Christmas to you and yours and I hope you enjoy the beautiful weather we are supposed to be having. I will get to take my motorcycle out and it will be awesome. There is nothing like being on the road on a bike…its freeing. As always stay strong and you all are in my thoughts. Love Mario.

    Liked by 1 person

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