Lyme Diaries – It Might Not Be Lyme

As I sit here in my living room, lots of little birds are chirping out the back French doors, heralding another day, and the morning traffic hums from the road. I don’t mind the traffic, just the engine brakes of the trucks that barrel down a few times a day; our driveway is at the bottom of two hills, and they really go for the brake noise if they are going too fast. Almost everyone is going too fast.

Yesterday I went to the hospital for a CT scan of my abdomen, which had been ordered by my doctor when she said, on Friday, that she “officially did not like this” – this being my set of symptoms that include: whole leg edema, stomach pain, and radiating back pain. I thought I had pancreatitis, thanks to Google. Yesterday I met the amazing radiology tech, James, and he walked me through my first CT scan. My friend Nicole, who also is a radiology tech, walked me through the steps a few days earlier. I was anticipating something that was alot worse than it was. It was quick and almost painless, although the feeling of the contrast going through your body is a weird one; hot, moving, liquid-y , with a spicy taste in your mouth. After the CT scan, I stood awkwardly in the front of our small, rural hospital, trying to decide if I wanted to go to the ER or not. Nieve, gatekeeper of MDI Hospital, asked me if I had another appointment. I told her the source of my quandary. She said, “only you can make that decision. But if you want to, I will call them to come up and get you”. I nodded and started to cry, and soon after, a young nurse assistant named Zabet appeared in the elevator. Zabet is an EMT and a part-time massage therapist, and she wears a mask all the time, as if we are still in COVID times. I suppose we are.

I went to the small ER, a cluster of comfortable purple recliners in a small room divided by green and white curtains. A funny nurse named Dustin with whacky disheveled hair came over and took notes on two sides of a post-it and made me laugh. He sent Dan, the doctor, all of maybe 25 years old, seasonal doctor from U Penn, over, and we talked. Dan somehow managed to be serious without being officious: he was serious, but he listened, and he was kind. We moved into a room and I laid down on the bed. My pain was starting to creep in as I hadn’t taken anything since early in the morning, and it was now noon.

Hot Tip – if you get a CT scan and then immediately to go to the ER, they read your CT scan in about 5 minutes! Dan came into my room and said some words that were a little bit ominous but mostly supportive, “there is something wrong with you, and you aren’t crazy”. He then told me that the scan showed “a lot” of enlarged and inflamed lymph nodes, indicative of something called Lymphadenopathy. Then he said that this indicates the possibility of lymphoma.

In that moment, I time traveled to three-ish years ago, when I went to Texas Oncology with Mary Ann to see her doctor, who she loved, the doctor who always wore tall high heels and power suits even when she came to see you in the hospital at 5am. She was supposed to get chemo that day, but we had a meeting with her doctor first. It was the day when her doctor said that chemo was no longer working, which we sort of knew because her belly was very swollen and she was jaundiced. We at least knew something was off. I reached out to her to hold her hand and she slapped me, not hard. She looked at me in fear and acceptance, and said, “I can accept this”. Yesterday, I heard her speak and in my mind I also said, “I can accept this”.

There was a bright yellow chair next to my hospital bed; the yellow was the same yellow as a pair of her funny Birkenstock clogs that she used to line up in a neat row outside the door of her apartment. I said, “I wish Mary Ann was here”. My mom, who was with me in the room, said, “because of her experiences?”. I said, “No! Because she would make me laugh!”

A few hours later, I was shot full of pain medicine and had had a chest x-ray and was scheduled for another CT scan the next day. I love the radiology tech, so thought it was a great opportunity to hang with him again, and he said the same thing when he came to check in on me. We went home at around 3, and I slept for a lot of the rest of the day. They prescribed oxycodone and laxatives (what a combo!). They work for pain but they make my stomach hurt. They told me to keep taking advil and tylenol, every 6 hours (I have to take them every 4 and am hoping I am not wrecking something in the process). My doctor called at 730 and said she had shown my paperwork to her superiors, and they were elevating my case and referring me to Dana Farber, the creme-de-la-creme cancer institute in Boston. She asked if that was all right, I said, of course! And then I cried.

When I went to the ER yesterday, I didn’t even think that this was a possibility. But here we are. My poor husband is so worried, I stayed eerily calm until 24 hours had passed and then I spent a lot of the next day crying, but that is ok. My trusty steed, Oscar, never leaves my side and all the friends who I have talked with tell me how loved I am and how I am not alone. I haven’t been able to go to the gallery all week due to a combination of exhaustion, edema, and pain. I want to go to work, and I am hoping we can get some symptom management down so that I can. I miss it.

I miss not having a stomachache, and I miss my appetite. I miss red wine in the evenings, and rose in the afternoons. I miss walking at a fast pace, listening to my heart rate increase. I miss feeling like my life force is strong. When I get these things back, I swear I will never take them for granted again.

Today I go to the doctor again, and on Tuesday I get to meet a random doctor who will read the results of my scans. I hope he is as nice as everyone else has been so far. Let’s put that out there.

Love, Patience

Time Capsules

cowboy boots

I have been many things in my short life. I have been a camp counselor for young students at the Museum of Natural History in Houston, as well as a genetics lab research assistant (I mostly did what I was told and spent a lot of time inside a giant freezer cataloguing little vials). I have been a bead- and oddities-seller in Austin, as well as a middle school science teacher. I have been a gallery girl in central Mexico, as well as a governess who conducted class on the brick patio of a beautiful hotel. I have been a gardener in New York City, as well as the personal assistant and later business manager of an art dealer. I have been a cross-country-traveling event planner. I have been a middle school teacher in Philadelphia. I have been a gallery girl in Maine, and now a jeweler, seamstress, drawing model, dog- and house-sitter, tutor, teacher, and writer.

ice melting 3

The ice is melting: winter is slowly coming to an end. Water is seeping and sometimes rushing out into the landscape. Little Long Pond, scene of so many early morning ice skates, is now covered with sheets of ice and water all around the edges. Gone is the deep cold, replaced by mud and water, by slush and a landscape that seems to spit up onto your clothes, your car, your everything. There were no deafening cracks or booms as the ice cracked and melted, as I had hoped, just a slow process of light returning, the path of sunlight expanding onto our landscape as if the beam of light was being pulled back, further away, its path widening as each day passed. The sunlight breathed life back into the wilderness, as if finally, after many months, the land began to exhale and inhale again, no longer holding its breath, steeling itself against winter.

grandpa

I received quite a gift today.

In my bedroom for as long as I can remember, I have hung a picture embroidered by my great Grandmother. It depicts two owls, one smiling sweetly at the other, in the tops of grapefruit trees. The colours are green and yellow and brown, and it is something that makes my bedroom feel complete: without it, something is missing. When I moved to Maine last June, the glass in the picture broke due to the overwhelming amount of stuff I had packed into my VW station wagon. My mom took it to the frame shop a few weeks ago to replace the glass, and hidden inside the frame was a note written to me by my Grandpa, for my 1st birthday:

“Canvas done by Mrs McDowell (Grandmother’s mother) between 1940 1942 during the air raids on Liverpool. For P.M. Blythe With Love 1st Birthday” (Also inscribed is 1981 and his name, to the right)

Neither I nor my mother knew this note was hidden inside the frame, and had the glass never broken, we would have never known. Discovering time capsules, like this one, is a bittersweet gift that comes around not often. My Grandpa died in 1994, when I was in 7th grade, the year my parents lost all their money and our family life significantly changed. I remember being a latch-key kid for the first time that year; our front door had a terrible stained glass design of a duck flying through cattails on it. The entryway was linoleum, beige in colour, and the rest of the house was carpeted in drab brown. I remember, when Grandpa died, when we all couldn’t go to England because we couldn’t afford it, and I think were probably limping along quite a bit in those days, being so sad because he was one of my favorite people in the world, if not the favorite. I hadn’t seen him, at that time, in four or five years, and had missed the ending of his life. Those days were hard days for many reasons, and I remember sitting on the linoleum floor by the front door, after school, alone in the house as my brother was outside playing, crying desperately with the knowledge that I would never see him again.

salisbury cove

Once, when my grandparents visited, we went to Galveston as a family and walked around The Strand. I think that my Grandpa really liked the States; he always found humour in our culture here no matter where we took him. After he died, my mom and brother and I went to Galveston one day, and I was walking around my favorite store there: a junk and antique shop full of curiousities. I looked up and saw an old man with bright white hair, a button down shirt and glasses, with a camera around his neck. It was him! I turned to tell my mom, couldn’t find her, turned back around, and of course, he was gone.

ice melting 2

Later, I had a dream that we were all together at the church yard where he is buried, where also my grandparents were married. It is a tiny church, built of old mossy stone, with a yard of graves around three sides. In my dream, our whole family was together: grandma, aunt, cousins, parents, children. We were walking through a churchyard and Grandpa appeared to us, only he was very young: as he was in photos of him during the war. He was smiling and happy, with his strong jaw and bright eyes. We spent time together: the time you can only spend in dreams, when you are not exactly sure how much time has passed, whether it is mere moments, or days, or months. We were all so happy just to be together: my Grandma especially (he died months before their 50th wedding anniversary). Then, suddenly, an array of white stones, set out in the pattern of an English cross, the St George’s cross with its even arms, began to hop up and down, tapping onto the flagstones but keeping their arrangement. He turned to us all and told us he loved us, but that he had to go. We all said goodbye. I haven’t seen him since, haven’t heard from him either.

That is, until yesterday. Love survives: I shall never doubt that again.

breakfast with grandpaBreakfast with Grandpa in 1987 in Formby, Liverpool, England…I would sneak downstairs to have breakfast with him before anyone else was awake.