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

Daily Promise

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It has been several days since I have written, and I now realize that it is a massive oversight. So much is changing, every day, sometimes every hour, that this situation almost requires documentation. So, I heretofore commit to writing at least a little bit, every day.

I post the statistics at the bottom of every post but suffice it to say: living through a pandemic is eerie and off-putting in the strangeness of how everything feels the same, except that you can’t go to work and you are not supposed to see your friends or go shopping for anything non-essential. Today, Drs Birx and Fauci presented some very interesting projection modelsof where we go from here. Without any intervention, 2,000,000 deaths. With interventions, our best-case scenario is about 200,000. Dr. Birx always says we need to do better, and I appreciate that about her. She also has an amazing scarf collection and wears them tied in interesting ways every day. Her scarf affinity reminds me of Madeline Albright’s pins; I love good accessorizing.

I am not trying to be glib. In fact, I am very worried. I mostly worry because I think only a very small percentage of people are taking the pandemic as seriously as they need to; it seems that people think it can’t really happen. But I think something at least will happen, and I am scared about what it will be.

Meanwhile, I have to come up with meaningful online lessons (that is no problem) and hope that most of the students do them (that is more of a problem), and I have to wrap my head around staying home for at least one more month. Two weeks has felt like forever: I wonder what I will be saying come May 5th. School is cancelled till May 4th per government order. Wild times.

I am going to teach lessons around COVID-19 in computer science class and think about meaningful communication and stress management and future-casting in college and career readiness. I am going to plan for next year’s switch to full-time computer science and moving to the high school. I am going to edit my book, which is 1200 pages and is sitting beside me on the table, grinning and glowing in its glory. I am so excited. I am going to sew, and garden, and paint, and organize the scary closet. I am going to write.

I have been listening to lots of podcasts about this pandemic: maybe you have, too. I am fascinated to talk to my friend and mentor, Derry, about the science going on behind the scenes of media frenzy and public panic. He says that they are studying why certain people die and why certain people barely get sick. They are trying to figure out why the immune system over-reacts to it sometimes, killing its own alveoli (lung) cells, and what impact the disease has on the heart. They are looking at using Immuno-suppressant therapy, perhaps, and trying to sequence the genotype of all people with the disease so that they can find the commonalities that cause people to die, and some people to spread the disease without knowing they are sick. Mysteries, right? Living through a pandemic, an event “never seen before in modern medical science” as Derry says, is a crazy, wild rollercoaster of a ride.

The backdrop of this ride is the beauty of Texas spring, with all of its birds and bugs and flowers. My bees don’t care that there is a human pandemic, and the starlings that gather in their murmurs aren’t affected. The rain falls with regularity, the sun sets, and it rises. My love for people grows each day, as before, but perhaps with a bit more purpose, intent and fervour. I worry a lot and try to remember that control is an illusion. I remember this best when I am outside with plants and trees. I remember it, also, when I am reading and sewing, or just sitting on the patio.

When this is over, whenever that will be, I wonder what we will remember? That is why I commit to writing every day. Otherwise, I will forget.

 

Date: 31 March 2020

Cases: 855,007

Deaths: 42,032

Mortality Rate: 4.916%