I Think It’s Getting Better?

Just a few days ago I wrote to y’all about my anxiety, my frustration and my helplessness. Since I began therapy a year ago, I’ve been trying to not compartmentalize my emotions as much and instead attempt to actually feel them and deal with them at the moment they happen. Well that turned out to be a mess! As I told a friend today, it’s like I’m trying to stop a waterfall with my hands. Every feeling and thought overwhelms me until I feel like I’m drowning.

So I began my extra anti-anxiety/depressant med a few days ago. I truly felt like a zombie the next day and ate a lot of sugar and salt throughout the day just to function (and comfort). But Thursday was a little better. I got to talk with my sister and a few friends and it was doable.

And today? Today was pretty ok. I didn’t go to work but had a meeting via Zoom. I got to laugh with some of my colleagues, ask questions, offer a little assistance, and generally felt good when it was over. I felt…worthy, competent, maybe appreciated in a weird way? Then I had to race to my appointments at the hospital, tests to have done before my distal pancreatectomy in June. The tests were not horribly unpleasant, but I wasn’t able to drink coffee or eat until 3pm, so I was a little fuzzy. It did remind me of what it feels like to have pancreatitis again, though, and not being able to eat or drink coffee and having your brain be foggy and just wanting to eat absolutely anything. I started to think about the upcoming surgery (and knowing I won’t be able to eat for several days then) and decided I just couldn’t. Back to stuffing shit into my brain boxes so I don’t have to deal with it!

As soon as my CT scan was done, I decided to go directly to the hospital cafeteria for coffee and a gluten-free blueberry muffin (which are especially delicious when you haven’t eaten in 20 hours). Normally I immediately leave the hospital after any kind of appointment. I’ve been there so much in the past few years for myself and my family that I don’t like to linger. I always have this feeling like if I stay for a bit, Fate will think I should stick around and something will happen to someone I love. I know. That makes no sense but my brain often doesn’t.

But…Dad died in this hospital. I’ve been thinking of him so much this past week, missing him SO much, desperately wanting to talk to him and be hugged by him again. I needed him. He’s not here. The last time I heard his voice and said he loved me was in this hospital. So today….today I lingered. I got my coffee and muffin and sat down in the eating area. I didn’t read my book or look at my phone. I just tore my muffin into bits, popped them into my mouth and washed it all down with Snickerdoodle coffee. I didn’t think of anything in particular. I didn’t think about the fact that this hospital was the last place I had a conversation with my brother, the last place I saw and touched my father, but also the place where my son was born and the place that saved my husband’s life. There is so much grief and joy for me associated with this hospital that it’s difficult to even know what I’m feeling.

So instead of trying to identify what I was feeling or thinking, I just sat. I watched a few people, but mostly I enjoyed what I was eating and drinking and concentrated on the tastes and textures. I lived in the moment. It’s something I wish I could do more.

There’s always tomorrow I suppose.

Here’s wishing all of you more times of living in the moment. ❤ Hugs to you, friends.

Running Through My Head

Picture this: You’re running through the quiet streets of rural Maine. You can hear the occasional bird chattering in the distance, a snowmobile driving through a nearby field, your footfalls on the pavement or splashing in the slush and puddles. Now picture your neighbor out puttering in their yard or shoveling their walkway as they hear snippets of “Mein Herr” from Cabaret or Pink telling them to “Raise Your Glass” or maybe even Rihanna & Eminem talking about the monsters and voices in their heads. Then they see this giant bumblebee of a woman running by, possibly smiling, possibly gasping, with that music emitting from her body. It’s a glorious image, isn’t it? 😉

Saturday was very warm for central Maine–in the low 50s on a February morning. The sun wasn’t shining throughout my 10K run, but it still felt like spring. I was able to wear my orange running shoes instead of my trail runners I have to wear on the snow and ice-covered roads, and I felt so light with those beauties on my feet. Yesterday it was either bare road or mud puddles, and I loved them both.

During the first few miles of my run, I just enjoyed each moment. My music made me smile, there was little traffic, I felt strong and swift. My thoughts started to drift towards home, towards my son who was getting ready for his first date as I pounded the pavement. He was nervous but excited. My husband was having a good morning with no body pain. It was a good morning.

I started to think about my therapy appointment from the day before. How overwhelmed I’ve felt this week. My need to prioritize my workload, yet how stuck I’ve felt all week. I got the call on Monday that I’ll need to have a distal pancreatectomy–removal of the tail of my pancreas. The cysts that are present are precancerous, so it’s time to take care of them. I’ve done so much of my own research that I feel like I know what’s ahead of me, yet I feel like I am completely clueless all at the same time. I meet with the surgeon in a few weeks with my long list of questions (thank you friends!) and I think I’ll feel better at that point. Or I’ll feel worse.

I know for a fact that the recovery will be awful. Hell, the removal of an internal organ or part of one is no easy thing for your body to heal from. It’ll take time. There’ll be a lot of pain and fatigue and who knows what else? Probably loss of weight, which normally I’d say “Alright!” Maybe I can look at the weight loss as a positive?

Yeah…maybe not. That’s my eating disorders and poor body image talking.

These thoughts flitted in and out as I kept running. The Beatles’ “All Together Now” came up on my playlist and I focused on the song and nodded along. I thought of my brother who introduced me to this song. I thought about the library and my work and how long would I need to be out for this operation and recovery? I love what I do but I also feel a lot of pressure to continually justify the library’s existence. We do great work and we provide MANY services to our patrons and residents, but sometimes it feels like too much, especially with just a handful of staff.

I had to push all of that out of my head and keep running, placing one foot in front of the other. Jon Batiste’s “I Need You” started to play and I could feel my face light up with that happy, fun music–just like my friend, Denise–this is her song and I love it! It makes me want to dance or run faster, which I did. It helped push me up a small hill and past the cemetery where my Grammy is buried. I blew her a kiss like I do most days and couldn’t help but think of Mom. If she were here, she’d be sick with worry about my upcoming operation. And Dad would reassure me that all would be well but worry as soon as I left the room.

As I neared home, I thought about what will happen during my recovery. What will I be able to do at home? I’m fortunate that my son is a teen and could do nearly anything we need him to. I worry that my husband will not be well enough, but currently he’s ok. And like many women I know, I currently do WAY too much of the work at my house. That will all have to change.

And I’m going to have to let some things go. I absolutely hate losing control over anything, and this all feels like a damned tornado ripping through every aspect of my life. Yet if I don’t go through with it? Pancreatic cancer will surely rear its ugly head at some point in my future.

So….yeah. I think I’ll take my chances with the tornado.

When I arrived at my house and tiptoed up my icy driveway, I was still in the same good mood I was in when I left. Actually, much more so. Even with all of my worries unraveling, I didn’t need to deal with them right then and there. I just finished running 6.2 miles at a much faster pace than I had run in weeks and with my body still feeling decent. I was smiling as I started to stretch on my front steps, and I asked my husband to take my picture. I wanted a record of how I looked, while I felt as good as I did.

I looked good. Happy. Satisfied.

It was a good day.

The future is uncertain, but isn’t it for all of us? Let’s just try to celebrate those good moments and good days right now.

Tomorrow I’ll work on my plans on how to control the universe.

In Limbo

Two weeks ago, I underwent exploratory surgery to identify why I continually get pancreatitis. The first time I had it was 7 years ago, at a time when I was running more than I am now, was thinner and rarely drank alcohol. I was hospitalized for it then, and again two years later. The third time was in March of 2020. I refused to go to the hospital because I knew what was wrong with me, COVID had just hit the U.S. and my husband had just been released from the hospital after being in a coma and on a ventilator. There was no way in hell I was going to leave my family. I sipped broth and Gatorade and water for 2 weeks, had blood drawn nearly every day during that time until my doctor said I could eat a smidgen.

But since then, I’ve had minor bouts of pancreatitis. I could feel the pain coming on and then I’d stop eating for a few days and eventually it would go away. I was tired of living that way, so my doc referred me to the Portland Gastroenterology Center. There are a few specialists there, surgeons in particular, who are kick-ass and are the only ones in the state who do a few things they do. After blood tests and scans, they decided I should have an endoscopic ultrasound where they can get a better look (and sample) of the cysts I have on the tail of my pancreas.

And that’s what they did on January 3rd. It was an outpatient procedure, no biggie, and I went home a few hours afterwards. They did say that 10% of patients develop pancreatitis afterwards, and I joked that I needed to lose 5 pounds anyway, so no worries!

If only I could have eaten those words. I did, indeed, contract pancreatitis, and lost 7 pounds. I finally started to feel better nearly 10 days after the procedure and was able to eat regular meals…for 2 days. Then one night I became tremendously ill for an hour, slept, and was in pain for another few days and ate little. I *think* I’m back on track as of today. I even went for a run on my treadmill, the first run since New Year’s Day. It was very slow and a bit painful, but I felt a huge sense of accomplishment.

Throughout these past two weeks, I started to get my test results. Do you know of MyChart? Many hospitals use it as an online portal and patients have access to all of the notes from the nurses and doctors, as well as the test results. If you read all of what is available to you, you’re getting your results before your doctor interprets them for you. This, my friends, can be dangerous for your mental health.

I read all of my results and, of course, did my own research of what everything meant. Thankfully, the first thing I read was NO CANCER. Yay! Then I read bits about my cysts probably being mucinous cysts and what does that mean? I sent one of the reports that my PCP didn’t get to him and asked him to explain some of it. I already had my interpretation–the cysts can cause pancreatic cancer if not taken care of. Maybe not now, but within the next decade. My PCP admitted that this was not his specialty, but he had the same interpretation. Then he told me to NOT panic and bug the shit out of my gastro doctors.

And I did.

My surgeon, Dr. Rolshud, seems to be a lovely person. We played phone tag one day and finally he explained that he was waiting for one more test to see if I was a high-risk individual for getting pancreatic cancer. (We won’t get those results for at least another week or two.) He did say, though, that because of my history of pancreatitis at such a young age (see what I said about him being lovely?!?), I am more than likely high-risk.

What does all of this mean? It means that if my results come back high-risk, he will remove the tail of my pancreas (distal pancreatectomy). He says there is no question about the surgery if that’s what the test results show. If it comes back low-risk, we have a discussion and figure out what’s best.

I have questions. My first instinct is to remove the tail of the pancreas. My grandfather died from pancreatic cancer, as did some of dearest friends’ parents. I know what happens and it’s certainly not my first choice of how to die. (Although I suppose we don’t usually get a choice, do we?) But will I still be able to get cancer in the rest of my pancreas? And my research showed that more than likely they’ll have to remove my spleen–which is a whole other ball of wax! I have a friend and colleague that doesn’t have a spleen and she has to be extremely careful about everything because she’s immunocompromised. (Your spleen is a huge part of your immune system, but you can live without it.)

What about running? I started to do more research today and some people stop running because it’s not good for their pancreas–yet others do fine. And the recovery? Oy. It’s a 6-8 week recovery process. Sometimes people develop diabetes because the rest of their pancreas doesn’t produce enough insulin. Others have to take enzymes (like supplements) forever because they continuously have diarrhea otherwise. After surgery, sometimes you can have stomach leakage.

Oh. My. God.

But…I don’t want to have cancer. I realize this doesn’t stop it from other areas of my body, but maybe we could stop it in one place? I also don’t want to have pancreatitis episodes for the rest of my life. The pain is exhausting and draining and infuriating. Typically, I don’t know what triggered it and then I beat myself up because I figure it’s my fault somehow. After surgery, I’m sure I’ll have to live on a low-fat diet forever and possibly give up any kind of alcohol, but that’s ok. I’ll whine about it plenty, but you’re used to that, aren’t you? 😉

For now, I wait. I try to eat healthy, small meals, and hopefully I can keep up my running routine. I’ll try to throw in more yoga and try to be good to myself. Since the procedure, I’ve definitely become a bit more needy for hugs and love, and long for comfort from both of my parents. Although in this type of situation, I can imagine the worry on both of their faces, then hear their reassurance that all would be well. ❤

Here’s hoping 2022 will look brighter in the upcoming months. Now go eat some ice cream for me!