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

Lyme Diaries – The Only Thing to Fear is Fear Itself

Kathleen Bowman is a person who lives in our small community up here in Downeast Maine, and a few years ago, she saved my life.

A few weeks ago, she and her husband came into the gallery with some friends who were staying with them. I didn’t say hi at first as I was talking to one of the friends who was gazing out the back of the gallery at the garden; there is a beautiful, luscious garden of hostas and rhododendrons and a small pond out the back of the gallery, and it is mesmerizing. He said, “do you know my friend Kathleen?” I said and smiled, “Kathleen saved my life”. He looked at me, quizzically, and we walked to go and say hi.

Since Wednesday of last week, I have been experiencing crazy edema in my legs and an increasing sense of pain in my back and abdomen, coupled with digestive troubles. It feels as if my whole system has become locked up and like it is stopped. It is a disconcerting and painful feeling. The swelling of my legs is scarier still, and makes walking uncomfortable. It also reminds me of a very scary time in my life when this happened before, when I was 18 years old, during my senior year of high school. At the time, for months, I hid the edema under the baggie pants that were customary in the late 90s. I loosened the shoelaces in my Vans to accommodate swollen feet. In Creative Writing class, I sat on the couch under the classroom’s tiny windows. I loved that class, obviously. One day, my teacher crouched down near me to help me and friends with something, and she noticed my swollen ankles under my pants and she asked me about them and how long they had been like that. I said I didn’t know and she asked a friend to walk me to the nurse. The nurse asked me the same question, and I said a few months. (Why? I was asked a lot during that time. I was afraid I was dying, and I was a sad and lonely child, and thought maybe it was better if I just did that, quietly). My mom came to get me and I went to the doctor and they admitted me to the hospital with a blood count of 1.7 (normal is 7). I spent the next two or three days in the hospital, and it was one of the most lonely times of my whole life.

I know my mom dropped me off at the hospital; she must have. But I was alone at night, and the doctors were assholes because I was (probably) a teenage asshole to them. I watched “Boogie Nights” and didn’t sleep and wondered if I was going to die in there by myself. I was on oxygen, which was great because I could actually breathe for the first time in a while, but thought to myself, over and over, “this isn’t good”. Some friends came, but the best ones didn’t, as it was too scary. It was too scary.

When the edema showed up last week, immediately I became scared; scared of what was happening, scared of the lack of answers, scared of the fact that this entire month I have just progressed into feeling worse rather than better, and scared of having to go to the hospital. My doctor told me on Friday that she wants me to go to Bangor Hospital and not MDI because it is bigger and has more resources. Immediately I was sent into an emotional tailspin that lasted until tonight, when I caught the truth on the wind and spotted the rise of a crescent moon that I could wish upon. I wished for it to help me alleviate my own suffering; my fear of being alone in a hospital at night. At the moment when I realized it, I realized how scared my younger self was all the time, and I remembered when Kathleen saved my life.

Kathleen is an energy worker of a sort; I can’t really tell you what she does exactly. She “tunes in”, she says, and then pictures show up in your head and she asks you to describe them. Sometimes you lie on her massage table and she does something Reiki-like that isn’t Reiki, moving her hands above your body. Over time, I began to trust Kathleen, and then one day it all came clear; the young version of myself, trapped in a cold cave that was made of stone. After a while, she was coaxed to come out of the cave, and the older version of myself was standing there, tall as anything, with a cloak or wings on, or both, and wrapped her in a hug and told her she was safe and could stay out. Tonight, on the driveway, under the moon rise, I remembered that moment, and sighed and cried at my littler self, the one who was so scared and alone a lot of the time. She didn’t deserve it, and she was just a child, and also, she doesn’t need to drive the bus anymore.

All of a sudden, I knew I would be ok and I just have to figure out how to be. I smiled at the moon and thanked her for always being there, right where I need her to be. I felt relief and that a 100-lb weight had been lifted. Now, my stomach is still killing me and my legs are still swollen, but I know I won’t be swallowed up in fear.

I have been in family therapy for the last few months with my mother and brother, and I have learned to appreciate my mom a lot more than I ever have done, but I have also learned that things were more messed up than maybe I realized. I was, after all, only seeing it from my perspective. Now I see things from my brother’s and my mom’s perspective, too. So even though I felt alone and scared so much as a child, I don’t think it was anything intentional on the part of my parents. My dad was actively seeking to maintain a series of delusional stories that covered up hard truths, and my mom was running around behind him, cleaning up. Tonight our therapist asked her why she did that for so long, and my mom said she was in survival mode until she started her career as a realtor. Our therapist asked, then, a harder question, which was “do you think you were really in survival mode the whole time, up until the point when he died?”. Hard truths. How can you parent your children when you are just trying to survive yourself?

Deep thoughts on a dark night. Everyone has told me that Lyme teaches you lessons, and that part of the disease is figuring that out. I learned tonight that I don’t need to be afraid of being alone in a hospital, breathing oxygen, watching bad tv, and being afraid of dying. When we all took care of Mary Ann, we never left her alone. We watched stupid tv and put on makeup and played with Instagram filters and listened to Tupac at 5am when the morning nurses came in. We took copious notes about treatment and laughed as much as we could and made the couch look like a hospital bed so we could be close together and giggle. That’s how my hospital stay will be, if there is one. If I am to die, and we all will, I won’t be alone. I will be surrounded by people who I love and who love me.

What a gift, what lightness. Let’s not stress when there is so much beauty in the world.

Lyme Diaries – Hot Showers & Tummy Aches

I started having symptoms of what I thought was anaplasmosis on Tuesday, June 24th: my half birthday, no less. Turns out it was anaplasmosis and Lyme disease, and I have had a stomachache since that day, every day, without fail. It is becoming frustrating and demoralizing. A monthlong stomachache!

In good news, I followed my doctor’s advice and started to use heat to help with pain and have been taking very, very hot showers. Almost immediately they stop the nerve pain, as if my body gets distracted by the heat from the pain and all the attention goes to it observing, “wow it is hot and that feels good!”.

I woke up at 4am this morning with a stomachache. I also have edema, as of two days ago, which either means the bacteria is causing it, or one of the medicines I am on is causing it. I tried and failed to not take any pain medicine last night, even though I have to say that the pain is much better than it has been.

This is a journey, and a difficult one at that. No one seems to know much and every time I ask they all say, “everyone is different?” and while logically, biologically, I understand that, it is a very annoying thing to say to someone who is just looking for answers as to why her stomach has hurt every day for a month, and why now her legs are swelling so much that squatting down is uncomfortable and feels like I am wearing a pair of tight pants.

My doctor also told me to keep a positive attitude so here goes:

  1. Super thankful for Cody cooking dinner last night. We made polish sausage and cabbage and I wonder if the cabbage has made my tummy upset. But it was so delicious and our first cabbage from the garden!
  2. Super thankful for my devoted doggo, Oscar. He never leaves my side.
  3. Super thankful for my cute and sweet and not stressful job. I could not teach and go through this at the same time, no way.
  4. Maine summer and the garden, even though I can’t go in the sun.
  5. Flowers! Stars! Winds of change! All of the natural processes that go on around me while I wonder when this will feel better.

It is now 5:58 and I am wondering if it is worth it to try to go back to bed, but my stomach says no. I hope you’re well out there and helping me ideate a tiny bazooka for all the ticks.

Taking Care of a Dying Person

I remember when I first met MawMaw, she told me to keep Cody on the straight and narrow. To be honest, she kind of scared me: this tiny, old person with a perm was clearly no woman to challenge. Over the years, though, I learned that tough exterior covered an extremely sweet person who felt herself to be much worse than ever could be a reality. She has given me and Cody so much, and so, when the time was right, we moved her in to our tiny, old house, and here she remains, in the slow and strange process of leaving the planet.

Last week was hard; it started with conversations with her dead sister Tootsie about Steve (her also dead husband) going out to the chicken coop in Bossier City only to discover a snake, would you imagine? We advanced to an admission of being afraid and a night of nightmares and everyone being awake trying to coax MawMaw back to our reality from one of her own. She sleeps with a little boy but doesn’t know who he is because she has never seen him. But, the last two days have been clear and almost normal. Her “symptoms” if you can call them that follow the pattern written out in the hospice folder. Perhaps we are within days, or weeks, perhaps not. No one seems to know anything specific about this mystery we call dying.

Taking care of a dying woman who cannot walk and who is bedridden while teaching 8th graders and trying to complete my first semester of grad school is very hard, and everything is suffering. I try to not take it all so personally: I feel defeated and grumpy all the time. I feel overwhelmed and sad and worried and anxious; I have a short temper with my students. I hope that will change, for their sake and mine. It is not their fault, after all, that they are teenagers.

She tells me funny stories sometimes, and sometimes I do nice things like give her a facial with lovely oils to soothe her “onion-skin” as her nurse calls it; paper-thin, almost translucent, and apt to dry out and tear if we aren’t careful. She still has her sense of humor and she winks at me when she is being wicked. I appreciate that very much. When she gets upset I ask her to tell me things about her children when they were little and about Bill (her husband) and when they got married, and how he built their house for $6000. Many times now, she doesn’t remember the details.

I have been watching her sleep and she reminds me of a puppy right now: moving, twitching, frowning and smiling as she remembers…something. I feel she is reckoning with her life at the moment, when both awake and asleep. She said the other day she wished she had been a better mother.

This process is slow, and it is also fast. Sometimes it feels like longer than 4 months, and then I realize how short 4 months actually is. So much has changed for us; our marriage is better for this experience as we actually have learned both to communicate and to take care of/appreciate the other one. We say “thank you” more and give each other breaks when things are hard: walk away even, or just kiss one another or hold each other’s hand rather than trying to prove something. These are good things.

As I type this, the north wind is blowing around the house, as it likes to do on some winter nights. I wonder how much longer she is with us, and if the wind will take her away one evening. I know the wind is a woman, and she a harbinger of change, especially in winter. We all talked about death the other day; we are all on the same page. We will be all right when it happens. Like she says, she has to get to heaven to be with her mama again, and her sisters, her brother, and her husband.

Such a mystery this life.

Do not stand at my grave and weep,
I am not there, I do not sleep.
I am in a thousand winds that blow,
I am the softly falling snow.
I am the gentle showers of rain,
I am the fields of ripening grain.
I am in the morning hush,
I am in the graceful rush
Of beautiful birds in circling flight,
I am the starshine of the night.
I am in the flowers that bloom,
I am in a quiet room.
I am in the birds that sing,
I am in each lovely thing.
Do not stand at my grave and cry,
I am not there. I do not die.

– Mary Elizabeth Frye