Tilted

Captain’s Log: Day 130 of the Pandemic

I know it’s been a while but did you really think I wouldn’t comment about all the recent doings at Casa Bigelow? When things are going well I don’t have much to say but when they go south, I have plenty of commentary. Just sayin…….

We were enjoying the summer and warm weather. We love being outside; reading, walking, kayaking, beaching. These activities are very doable in a pandemic since it doesn’t necessarily involve others. I have really taken to cooking, go figure. We have found a farmer’s market that we love and visit weekly–how do you say tomato? Of course we have been sheltering with the kids and dogs all along. They are very much the social entertainment around here and let’s face it, they love the beach too. Pregnant mama/head coconut has been motoring along despite nausea and making lots of pies. She and her husband bought a beautiful new house to be nearer to us and the beach and moved at the end of June. Little coconut has been killing it at work. We share a profound love of all things Hamilton and have been watching/listening to it on repeat. All was good until last week when I began my usual anxiety about scans and upcoming Moh’s surgery. Tim reassured me as best he could. We celebrated Evan’s birthday with family on Saturday, a great day. Until it wasn’t’.

Tim woke me up very early Sunday complaining of stomach pain. By 8:30 I had dropped him off at the ER of our local hospital. He never complains so this was serious. Yup, it was appendicitis in the middle of a pandemic when he had to go it alone. I spent anxious hours by the phone until the doctor was out of surgery. Little coconut came to bring me dinner, stay the night and bring me to Faulkner Hospital for Moh’s surgery that I had been waiting over a month for. Tim’s surgery the night before went well and I arranged for Kelsey to pick him up on discharge and bring him home while I was off in Boston. Yup, it was skin cancer and deeper than expected–this resulted in the need for reconstruction of my nose. I was not mentally prepared for that. After a long process I left with skin from my cheek cut out and attached to my nose in an open flap, heavily bandaged. Two more appointments will happen to complete the process and I should look ok in about 6 months!? What? Yup. Not pleasant. Stay out of the sun kids and wear sun block every day.

I huddled with Tim when I got home and that night and Tuesday were a blur. He is uncomfortable and in pain still. Definitely not bouncing back. The decision was made that he would not be accompanying me to Cancerland on Wednesday for the first time in six months (I had been doing telehealth calls with my oncologist). Once again, Bridget to the rescue. She dropped me at the door of Dana Farber and it was like entering a whole new world.

 

Boston was a cross between a war zone and the apocalypse. Everyone and I mean everyone, had a mask on. Floors and doors were marked, my usual path rerouted through a screening process. Security was everywhere and strictly enforced. I passed go and got my sticker to enter the building. The usually packed elevators were restricted to 5 people. I can see why Massachusetts is flattening the curve. This is serious business and no one is protesting that they have to wear a mask for god almighty sake. Every time I see a protestor screaming about their right to freedom I want to scream obscenities (well, I kinda do). Just wear a mask and shut up. Not everything is about YOU.

Once I got my injection of the radioactive tracer for my Pet Scan, the lab nurse arrived for my blood work to save me a trip to the lab. It was afternoon and after fasting from the night before, I was spacy and out of it. I think I fell asleep in the machine. Next, I headed outside to walk to Brigham and Women’s to get a sandwich. I gotta say I am not used to navigating anything solo at this point in my life. I found my way to the door and was greeted by an officious young woman who demanded my cell phone and made me down load an app and enter my info in order to gain entrance. I was rerouted again, got another sticker (so colorful, I feel 10), and found my way to Au Bon Pain which was like entering a giant wrapped cellophane package. Crikey.

Iced coffee and a sandwich later, I revived enough to return to Cancer land and up to the lady cancer floor. No one was there. It was a ghost town with chairs oddly lashed together and spaced out. More hand sanitizer and another tracking device, more vital measurements to see if I have shrunken, and finally I got to the room where it happens (see, Hamilton humor there).  Dr. Rachel whooshed in, Tim face timed and we were in business. My Pet Scan was Great!!!!! Still no evidence of active cancer despite noting I had broken my 11th rib (huh?), my adrenal glands had gotten smaller and my kidney functions were elevated by all the Tylenol I have been taking for my face pain. I know more about the inside of my body than most people learn in a lifetime! Yet, I almost couldn’t embrace this good news fully after all the events leading up to  it and not having Blanket with me. It never gets easier after all this time. I have had cancer for over 18 years, 5 of them metastatic. It still is beyond hard on every level.

On another note, I wanted to mention the passing of one of the very best people I have ever met. My young friend, Erin died of MBC at age 35 and left three children under 11. She was one in a million and someone you could never forget. I will always miss her and her infectious personality.

Lots of doings at Metavivor where editing their blog has kept me busy all winter. More news about that later.

So……we have been licking our wounds and sulking plenty. My face hurts and Tim’s energy is zapped. We gotta get out of this funk. We should be happier but meh. I finally got Tim out for a walk yesterday, the kids will be around on the weekend. The sun will be out.  We will find our groove. Today I am de-tagging baby clothes and washing them in Dreft for baby mama. Tim is watching old Hitchcock movies. He will be back to railing against baby orange soon.

Remember to get out there and live life to the fullest, or in our case, on full tilt.  It gets better. Baby Jack will be headlining here soon.

Love from the circus

 

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