I read an article this morning about new research that indicated that women can exhibit the cognitive deficits commonly ascribed to the effects of chemotherapy before they actually receive chemotherapy. The study suggests that the distractibility and deficits in executive functioning skills are actually the result of post traumatic stress caused by learning they have been diagnosed with an incurable, lethal disease. Yup. They did a study on that. Why didn’t they just ask me? For weeks now bouquets of beautiful flowers have been arriving every week in my office–flowers of all shapes and types. I thought it was lovely but not once did I question it until one day when Lisa said “Hey Barb, who do you think is sending you all the flowers?”  I guess I was a little too distracted and tired to question this awesome new trend. Go figure. Cancer Brain–it’s a real thing. Thank you co-workers!

So my kids decided to move (at last). The weekend was a whirl wind of activity and mostly boxes–boxes everywhere, and shoes, lots of shoes. Monday came (finally) and Tim took the day to U-Haul them to their beautiful new apartment in South Boston two blocks from the beach. Did I mention the roof deck and view of the Kennedy Library? Yeah. After my work day they picked me up to join them in unpacking the kitchen, fussing with everything and anything and then time for dinner at a terrific restaurant around the corner–life is good for the coconuts.

Tuesday I wake up to a weirdly quiet house, minus the boxes. Pouring rain outside and cold. My cat does not want to get up either and burrows under my arm pit. Gotta admit it is kinda lonely without the coconuts but very peaceful too. The plan today was for Kelsey to accompany me to my second visit to Dana Farber. Unfortunately the new bed and bureau delivery did not wish to cooperate with that plan and she is marooned at home to wait it out. No one to drive Miss Daisy so off to my new home at DFCI by myself. I have to acclimate and learn to navigate this complex new world on my own sooner or later, so why not today?

Yeah. It was like traveling to a foreign country and not being able to speak the language. So many new rules. I GPS myself there via streets I have never been on in my life.  Once in the parking garage I circle 4 levels below sea level before spying a spot. As I pull in a sign says “reserved for patient use only” so I quickly back out (not so easy in a big ass Jeep Commandeer) and continue the hunt. Wait a minute–every space is marked “reserved for patient use.” What? I AM a patient. What other kind of idiots would be parking at a cancer center?

Upstairs the nice people-guides direct me to the lab—-all these sick people wearing surgical masks lolling about. I sit quietly until the second or third time the nice lady says “Barbara Bee” and I ask her if she is talking to me? They apparently don’t use last names in cancer world. Next, the nice phlebotomist asks where I drove from.  “North Easton” I respond and she looks at me like I am from Mars. Then she tells me she is from Brockton. What?! Apparently the “north” part eludes her.

Back in the lobby a young man is playing classical music on the baby grand piano and more nice people are dispensing refreshments. Feels more like a hotel than a hospital. I wander through the serenity garden before landing on the 9th floor with all the other cancer ladies. Everything kinda whooshes and murmurs, very quiet, but not, at the same time. I park myself on a comfy couch in the corner to play with my new fitness wrist thingy that is telling me electronically that my sleep patterns really suck but my daily number of steps is awesome.  A young man in a blue vest approaches me and wants to know how I am enjoying my visit today and if there is anything he can do for me. Do for me? Yes, get me out of this Stepford-Wife Cancer House and back to my real life where I understand everything that is happening around me and I do not have cancer anymore. “No thank you” I murmur.

The clinical assistant comes out looking for someone named “Barbara Dee”—I think that’s me. Daley I ask? Yup. He weighs and measures and blood pressures me—Do they really think I am still growing at my age? Nope, still 5’4″.

Next I am checked into the examining room and my dog tag tracker thingy is activated to let whoever wants to know that I have arrived. I meet the NP on my team –yup, I have a team. Doc Rachel arrives shortly thereafter. I tell her about my blurry vision and that I have made an appointment with an ophthalmologist—I don’t think the nice optometrist at Costco is enough for me anymore and Rachel agrees. We talk about the unexplained black bruises all over my abdomen but she thinks my platelets are good. She tells me that they got my tissue samples from Beth Israel and reanalyzed them at the path lab at Brigham and Women’s and there is a difference in opinion. What? They think the  tumor under my right kidney is not as estrogen positive as Beth Israel thought and that could have changed my treatment plan (since they are always trying to out run the cancer’s ability to become estrogen resistant and stop responding to chemo). The Letrozole I am taking is an anti-estrogen but she feels there are enough signs that the Pablocyclib is working that she does not want to change things.  In fact she wants me to go right back on after the 7 day break, take a break from weekly lab work, stay on course and she will scan me in 4 weeks to see if it’s working. Okay…..Pet Scan (due to the risk of kidney damage from the contrast dye that they use in Cat Scans)–June 30. Petrified.

I take a deep breath and launch into how I always plan summer vacation over Christmas break and well, we did not know I was sick and we chose Belize. I have barely finished the sentence and she says “that is wonderful, so happy for you.” The NP says “ya, I’ve been to Belize, you’ll love it.” What? What is happening here? They actually think this is a good idea? Yup, they do. They want to support me in living my life to the fullest. If I were going to do any thing potentially harmful they will let me know. Okay then, Belize it is. It is a shocking new world in Cancer House. She also tells me that it takes time to adjust to the medication regime and I may feel better as time goes on but if I don’t, she will decrease the dose because she does not want me to feel sick all of the time. Yup, new world over here.

After my appointment I try to find my way out. Apparently the cafeteria closes at 5:00 so I miss the opportunity for pizza. The elevators only go down so far but not to the parking lot 4 levels below. I ask a nice person in a white lab coat how to get my ticket validated and how to get there. She jumps up and shows me to a new set of elevators and says parking today is free all day. I ask if it is a special day in my honor and she says no, the new 2 million dollar computer system they just installed on Monday is down so no one has to pay. I get on the elevator with other cancer types and ask them if they had their tickets validated. They are adamant that I must do this and to go back upstairs to floor 1. I do this and get stamped, get on another elevator but there is no button for my parking level. I really am Alice in Wonderland. Another person takes me in hand and delivers me to a different set of elevators and down the rabbit hole I go and I am free.

Mario, wherever you are I hope you are having a fabulous time.

My song this week: White Rabbit, Jefferson Airplane of course!

Love,

Alice and gang xoxo

 

 

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Written by barbigelow

Wife, mother, school psychologist, cat lover

6 comments

  1. Barbara, you are too much! Only you could make it all funny and REALLY informative at the same time! You’ve always been great with detail and I see that hasn’t changed on chemo brain. Glad you are now with the NICE team in the NICE hospital. And that you can go to Belize! Sounds like an exhausting day. Hope you and the cat are relaxing in the quiet and cleaner house… (And Tim too)

    Liked by 1 person

  2. So happy the weekly flowers are being delivered to you. I though it sounded like a wonderful idea when Shannon emailed everyone. Sounds like Dana Farber is a bit confusing to get used to but what an amazing facility it is and glad you are being followed there. Start planning your Belize trip 🙂

    Liked by 1 person

  3. 🙂 i got to the end of this episode and the shout out for me made me feel good…thanks! Or fourse im reading it now but still made my heart flutter. As i said before i had am amzing time! Boy i guess you were alive in wonderland but you did it and am prpud to hear it!! All these big words being used is amazing…some i can pronounce and others i have to pretend to know how to say and move on lol…

    Liked by 1 person

  4. Wow, so evocative of that special Dana Farber experience! It took us half an hour to figure out that parking was DOWN, not up. I mean, really! Hope that your care there continues to be supportive and effective.

    Liked by 1 person

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