imageHello Peeps, its been a while. Happy Labor Day or as I like to call it “No Work Day”. Some bumps in the road, nothing major, lots of little adjustments.

First, I read a lot of blogs written by women like me. It helps ground my perspective and gauge if I am being overly sensitive or not. I also learn things and get reminded to spend time with people who want to be with me despite the hard stuff. I will only go where I am wanted.

imageWhat I circle back to the most in my thoughts is the kindness and love and support and laughter I receive daily from all corners of the universe. My BELOVED co-workers who continue to send me a fresh bouquet of flowers every week all summer long to remind me they are there. (This is a photo of two orchids I received that I call my “babies”). They are always checking in and asking me how I am feeling. It means something.  To me.image

The reconnecting with old friends and the making of new ones. People who  care and are interested in my circus. College buddies reaching out to me with texts and calls, Brunnie coming for lunch, the lake dock at sunset with Jack and Sid, boating and sitting around the fire pit with Bill and Carla, cookouts with Sharon and John, lunch with Arleen and Elizabeth, every time I am with the coconuts—-it makes a life for me between the otherwise dark spaces. I choose to focus on that life. It does not mean that the window does not open occasionally, despite the tender mercies and memory making, to reveal the scary stuff. I glimpse a photo and I think you look too happy–it’s not real, you are faking it because you know no matter what you are dying. I slam that window shut and run away. How else could I cope? Sometimes I am in a room full of people and feel acutely aware I am not like them at all. I am going to leave them behind. The spiral starts and I have to pull it together, get back on the horse, ride the wave away from beach. And mostly I remind myself to be awesome. There’s always that too.

Tim and I have started to touch the edges of the painful conversations we must have with each other and our inner circle whose job is mostly to make me laugh and poke fun of my situation, the scariness of it. I remind myself we are not there yet, we have time. I am a metavivor–someone full of cancer tumors who lives in 12 week increments, from scan to scan. I am on a radical new CDK 4/6 inhibitor and hormonal blockade that should slow the cancer’s progression, on average, for 20.2 months, up from the previous 10.2 months. I am 6 months into treatment–let’s hope I get those next 14.2 months or longer. I will be in treatment until I am dead. Onward, upward we go.

Before I forget–Bridget went to Dana Farber with me to see my breast cancer surgeon and everything in her world is A-OK. I won’t have to resort to murder after all.

My cleaning ladies crack me up since I have seen more of them this summer. They coo and fuss over me and tell me that God and Love will heal me. I almost believe them because they are so cheerful and sincere. I have been cleaning out closets lately and giving clothes to them to send to family back in Cape Verde including two dresses I bought last summer with the tags still on them. Bridget said, at the time, “you look like you are joining the Abnegation faction in Divergent or going Amish” and that was the end of that. The cleaners liked them. Moving on.

The little coconut has decided to join me at work. Yup, she is the new high school ABA Tech and I get to see her daily–how awesome is that? The other coconut is settling in just fine in the ER at Mass General. She has a nice guy. They are good.

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Speaking of work, how awful is it for summer to be over when the weather is decidedly not cooperating and screams summer all day long? I do not have air conditioning in my office so I can’t avoid the heat. I can’t imagine taking off my flip-flops and wearing actual shoes. Tim Blanket bought me a refrigerator for my office–to keep cold drinks and snacks close at hand. Yup, the nausea is constant and I have been vomiting on a nearly daily basis, a good day when I do not. The chemo is cumulative despite 3 weeks on, 1 week off. The poison is slowly building up in my system to try to keep those ugly suckers at bay so now there is no ebb and flow to side effects. It just co-exists in me uneasily. The first day the students returned to school I had to run to the nurse’s office by 9:00 to throw up—-Hi Nurse Lynn, nice to see you, did you have a great summer? She patted my back and murmured till it was over.  I need cold drinks, carbonation, Cheezits, Zofran….The change in my schedule and the forced eating to be on a schedule is not working. I will figure it out. We are already learning the foods that have to be eliminated–tomatoes, fish, most fruits…..some of it is trial and error but once I get a rhythm going it will work out. Thank god the kids were too busy visiting with friends they hadn’t seen all summer to bother the nurse on the first day.image

And my advisory kids are now juniors (I am with them all 4 years of high school)—-the boys have grown in leaps and bounds! I bribed them with Tootsie Roll pops to gather on the half wall in the cafeteria for our annual first day of school picture. Surprisingly cooperative crew. And so it begins…the kid rushing in at 7:15 AM shouting “I have so much to tell you!” …The boys who forgot to bring their schedules and need them printed out right away….The running full tilt to the first class…. The scared freshmen who can’t locate the gym.

There have been a lot of administrative changes this year (outside of my building) so my fellow psychologists around the district have decided to adopt the mantra “Not my monkey, not my circus”. Maybe we will get tee shirts made.

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My song? “Summertime Sadness”–Lana Del Rey

Think I’ll miss you forever

Like the stars miss the sun in the morning sky

Later’s better than never

Even if you’re gone I’m gonna drive

I got that summertime, summertime sadness

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Thank you to everyone for the laughter and love,

Barb and the circus

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Written by barbigelow

Wife, mother, school psychologist, cat lover

12 comments

  1. Your fortitude is amazing. Not to mention tolerating screeching teenagers, I did not even like my own! Come visit Narragansett..it is summer until Columbus weekend.

    Liked by 1 person

  2. Hi Barbara,
    I appreciate your words. It is nice to imagine you are sitting across from me speaking these words. That’s how it feels. I miss my friends at OA more than you know. Your words are such an honest expression of your experience…..Cheezits and Zofran…Im glad to hear that the school nurse is taking good care of you. Your FB posts are filled with such joyful memories and blessed present moments. While I don’t always comment, I read them all. The pictures of Highland
    Lake brought me back to my own childhood. I learned to water ski on that lake. It was like flying over glass!!!

    As you know, only those walking your difficult path can understand the dark spaces. Those of us on the sidelines
    ( an appropriate location seeing as they freed Brady) try our best to balance hope with the stats. We tell ourselves that surely the cure is around the corner….like literally in some back closet, especially at the Mecca of cancer treatment. My sister has primary central nervous system lymphoma. She is being treated at Dana Farber in a clinical trial. She had a recent relapse after an 8 month remission. Her hair had just grown back all curly like mine. She’s back in the chemo saddle….trying to move forward with grace, courage and a kick butt attitude. And she is scared. And I have to be careful not to try to talk her out of that. That is our instinct when we are experiencing our own fears….I ask myself are we fighting or fleeing when hearing the fears of those we love? Presence and listening and loving are my lessons. I believe that God is Love and to steal some words from a spiritual soul…..Love shows up.

    Your coconuts are so beautiful and they sound like they are nicely settling into their grown up lives. I see both of their faces in your smiling face in those pictures you posted. I can’t imagine working in the ER at MGH these days. I trained there and worked there for 3 years after I graduated! Never a dull moment. Having Bridget at OA must be fun. I wonder if she still does art?

    I simply wanted to tell you Barbara that I am thinking about you and your family daily and sending you blessings of Love and Peace. 🙏 Joyce

    Liked by 1 person

  3. Thanks for the heartfelt update. I hate to hear you are vomiting. I don’t know what I thought would happen but I just hate that. Thought of you and Tim and the girls today. We brought Jackson to NEU and went to Legal Seafood rooftop on the Seaport. That’s the place to have those “life is good” moments that I think you are so good at. Remember “these are the moments we dream about when shoveling”! I’m rambling but wanted to say I miss you!

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  4. You have some real guts to work through this phase of chemo, and yes, I know sometimes one has to and sometimes one wants to. You are pulling your load fully, and it sounds like you are having a positive impact on students at your school. Wishing you a flexible administration, lots of opportunities to dial in your preferences, and swift resolution of side effects. Keep the entries coming when you can, I appreciate your efforts.

    Liked by 1 person

  5. Hey Barb, thanks for the update. These are hard to read, but not as hard as having to write them, I’m sure. Glad you and brother/blanket Tim had such a nice summer. It is great for us Michiganders to be able to be part of your life through your pics.
    Marietta and I are hoping to get out there to visit sometime when it’s convenient for you. We will have to talk soon. ☺️❤️🙏

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  6. I have a love/hate relationship with this blog. I love the way you write yet abhor the disease behind it. Screw the ghosts. You have so many great friends–I know you are aware of this, but I would find it difficult not to be pissed off as well. I’m glad you like the orchids. I thought of you immediately when I saw them. As difficult as it is for me to say goodbye to summer, I am happy to walk by your office and see you at OA. Congratulations and welcome to the OA family Bridget! XO Jen

    Liked by 1 person

  7. I will always be grateful to you for something you probably don’t even remember. My first day back at GISW after losing both of my parents in a 5 month span to cancer- you were there. You listened as we chatted and worked out. You understood what I was going through- and that was just what I needed so desperately that day. Your wisdom and humor helped me so very much!

    You continue to impress me with your honesty, wisdom, humor and selflessness while you share this journey with all of us. You are one incredible woman- who has been dealt a very difficult set of cards. I’m sure you hear this every day- but if ever you need anything- I would love to return the favor. A laugh, a tear, a cup of tea, a walk, a workout.

    You are one special lady! Lisa McKenna

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