Early Morning Pain Diary

It is 3:37am and I am overthinking pain and I am sitting in my sewing room and writing here, hoping it will dissipate and I can go back to sleep. It is my niece’s 15th birthday tomorrow and I am hoping to go to her celebratory breakfast. On the table beside me is a pill bottle with Oxycodone in it, the pill that works but that I don’t like; I feel it makes me edgy and nervous, and I am already edgy and nervous now.

I found something on the internet last night that said to write when one is overthinking. I find it helps, if only to track the racing thoughts and feelings of pain so that I can reflect on them later. This pain is wild: it starts in my back just below my shoulder blades and goes down near my kidneys then wraps around to the soft parts of my belly, which are swollen. I don’t think I am digesting food well: it feels stuck. I miss enjoying eating and drinking things, and I miss not being in pain every moment of every day. My legs and feet are so swollen with edema, and the swelling stretches all the way into my mid-belly now, misshaping my hips and my tummy and making me feel like I am sloshing around with extra water, 17 pounds of it at the last check. It all feels insane. How has this happened and why is it happening?

It is impossible to feel comfortable almost anywhere. It feels like my body is rebelling against me and I don’t know what it is trying to tell me except that many of its systems are angry, riled up, inflamed, shrieking! I had to leave work earlier today because my legs were so swollen and my back was hurting so much that I couldn’t concentrate and I was worried about being able to drive safely in my mental state. I hustled out the door in tears, apologizing for something that I cannot explain.

I just took one Oxycodone 5mg: I guess we are getting a play-by-play this morning. I keep wondering what this experience is supposed to teach me. I am so confused and clouded by the symptoms of pain and physical discomfort, that the only thing I can pay attention to is how much my friends love me and communicate with me and wish to help. It is so wonderful: I feel like I am in this pink cloud of love, made of all these people who love me and want me to feel better. I can’t believe there was ever a time when I worried about being alone. I have been reflecting on my post from last week when I wrote about my experience in the hospital when I was in high school. Something in my body knew something was up: I was in the ER the next day and now upon this journey which appears to be just beginning.

I worry about how I am going to pay for things now that I am not working very much. Do I call the credit card company and tell them what is happening and ask them to pause for me for a month? What about the student loan company? It seems worth a try as there is no way around how this feels: debilitating. I wish pain pills helped instantaneously and I wish they didn’t mess up my stomach. I can’t figure out if all of these medicines are helping at all. They must be? It is so confusing.

One of the other things I am able to focus on reflecting upon is how many things about health that I took for granted: walking long distances at a fast pace, munching on delicious food that made me feel good inside, sleeping through the night now that I have an Estrogen patch, and drinking a glass of rose with friends on a beautiful afternoon. All of those things are on pause. My work is on pause, and by that I mean my creative work, as I can’t focus on it and have no follow through and not much strength to do anything. It feels scary, it feels lonely, and I cannot get comfortable. My sweet husband has been doing everything, and I feel bad about that, too.

My doctor tells me I have to let go of all of those feelings and be willing to accept help. I am, I think. I mostly feel guilty about Cody having to do everything. But so far, at least to me, he is willing and not too exhausted. Right now, as I sit here typing, I am moving my body back and forth in the chair in a vain attempt to alleviate pain, to stretch something that is taught, to do anything to help. No luck.

Dear Universe, please help me move beyond this pain state, and may the surgery being done Friday be safe and go well and remove some samples that can help us understand what is going on so that my body can heal itself. This is hard, y’all. Love.

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