pancreatitis

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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.

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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!

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This Sucks

For just a moment, I want to take a break from COVID-19 and tell you what my life has been like since my last blog post. If we’re friends on Facebook, more than likely you know much of this story.

On Groundhog Day, I took my husband to the ER where he was diagnosed with pneumonia and Influenza A. By the next night, Monday night, he could no longer breathe on his own. He didn’t want to have a breathing tube put in and put on a ventilator (he’s severely claustrophobic) but his only other choice was to die. I sat with him, holding his hand, and he said to me, “It’s so hard to breathe. I can’t do this much longer.” As scared as he was, I was afraid he would choose to die. But at only 52, and having me and our 12-year-old boy, there was too much life to live still. So he chose to live.

The next 2 weeks were hell. Once they intubated my husband, they nearly lost him several times that night. As the doctor said, “We gave him all our ‘Hail Marys’ at the beginning.” That was the only way to keep him alive. I spent much of that Wednesday in the hospital, holding his hand and crying. He was in a medically induced coma at this time. My son and I went to get tested that day and surprise! I had the flu, too. (My son got it the next week.) I was no longer allowed to visit my husband in the ICU until the following Tuesday. I was so angry at the universe and I sobbed and I just couldn’t believe all of this was happening.

Then each day his numbers got a little better. By that Saturday, they thought they might be able to take the tubes out and get him breathing on his own. But they couldn’t wake him up. They ended up doing a cat scan of his brain because he was just flailing and eyes rolling and he couldn’t respond in any way at all. Fortunately his brain was fine, he just couldn’t wake up.

The first day I was allowed to visit him, I stayed the entire day and played music to him and read and talked with him, held his hand, massaged his legs. I kissed him and got mad at him and loved him. It was a really long day. The next morning our son woke up crying. He just wanted to sleep and not go to school and not deal with this fucking nightmare anymore. And I completely understood, but explained we both had a job to do that day. He go to school, I go to work, Papa gets better. And you know what? That day my husband did wake up. Only for a moment, but enough to answer the nurse’s questions. (I called my boy’s school and the principal told him in person that his father had finally woken up. I truly love his school.)

Friday, Valentine’s Day, my husband’s breathing tube was removed and he was able to speak for the first time in 11 days. We had never gone more than two days without speaking to each other in nearly 25 years, so this was a pretty special day.

The next week and a half in the hospital was tough–he was really loopy for a few days and didn’t make much sense. But as he slowly started to get better, it was just difficult to see him so fragile and weak. He lost 40 pounds in four weeks, so his body was just ravaged. But then on February 24th, he finally came home. Those first 2 weeks home were a bit rough, too. He needed more help getting around than I realized and seeing my husband use a walker was really hard for all of us to see.

But now, three weeks later, he can walk for at least 3 minutes at a time with no assistance, can walk a flight of stairs, showers and dresses by himself–these are all huge accomplishments compared to last month. So he’s finally coming back to us.

And then COVID-19 happened. I know we’re all dealing with it–people are sick or dying, schools closed, some folks working from home, our area still in flux. My library is still open but that could change this week. My husband had planned to go to the store this week with our brother-in-law but I have told him he will no longer be allowed out except to the doctor’s office. He laughed out loud but then looked at my face. “Ok. I get it.” His immune system has been compromised and after the nightmare we just went through, I’m not losing the big lug now.

Oh, and did I tell you I have pancreatitis? I’m on Day 9 with no real food–water, jello, chicken broth and bullion and the occasional sip of Gatorade. I just need to keep out of the hospital because my husband still can’t drive and I need to be here. But my numbers are slowly getting better (my doctor is aware and I’m having blood drawn every few days to track this). The pound a day weight loss is nice but I am really freakin’ hungry. But if I can’t yet eat by Friday, the 2-week mark, then I may just have to go to the hospital. Here’s hoping I can beat this on my own!

So now for just a minute, I want to talk about COVID-19 and the effect it’s having on myself and my family. Besides being scared and desperately wanting to escape this dystopian novel, are you angry? I have been so, so angry at the whole situation. Not any person in particular–yes there were plenty of fuck-ups along the way but I’m not mad at a person. I am just feeling so battered and bruised and oh jesus what will happen next?!? We already cancelled our cruise with the help of doctor’s notes and a load of paperwork (I am so thankful for travel insurance and will never go without it again) and who the heck knows about our trip to Florida in April–yet I’m ok with that. If we can’t go, we’ll try again later.

I just want there to be a later. Right?

My family out to see Jim Gaffigan a few years ago.

That picture? That event? To be able to go to a large stadium or arena and listen to music or a comedian or see a play—that is what I want again. I am sure that someday we’ll be there, but I’m also sure our lives have changed forever. I know that after my husband’s hospitalization, my family’s life has changed forever. We have really enjoyed our time together since hubby has been home. He can still drive me crazy, but we no longer take each other for granted. And maybe this virus will do something similar. Maybe we’ll appreciate what we have a little bit more.

Or maybe we’ll go back to our old ways and be jerks to each other.

But I hope not. I hope we can get through this together–but 6 feet apart.

Stay healthy, y’all.

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Stress is a Killer

Let me begin by thanking all of you readers and your thoughtful comments and suggestions when it came to my mom and her care. As of 5 days ago, she is finally in a safe place. Unfortunately, it was after an incident where “Jack” had to be asked, by the police, to leave Mom’s house.  This was followed by two weeks of me stopping by every other day, checking on Mom, giving her meds, watching to make sure she ate, and horrible conversations with her about moving somewhere where she could be safe and taken care of.  You can imagine how those went, right? Not good.

After talking with Mom’s nurse and social worker, and having them tell me that it was really ok to lie to Mom and tell her she had an appointment when, in fact, she was moving, I ended up doing just that. The facility Mom has moved to also knew what was happening and they’ve had to do this type of thing before. The move is for the safety of the person. My emotional health was irrelevant but Mom’s safety was the most important thing I had to keep focusing on. And I did.

Once we were inside the facility and the director told Mom she was staying there for a while, Mom first got angry and headed for the door. Eventually she followed us to her room, sat on a bed, put her head in her hands and sobbed.

It was absolutely fucking awful.

In many ways this was worse than in January, when Mom moved to a different facility. Maybe because I was by myself this time? But in other ways I knew in my heart and soul that this was the best we could do. She would be safe from herself and at least one other. She would be eating 3 meals and 2 snacks a day. She would have other people around to talk with and to. And she’s only 25 minutes from where I live and much closer to other members of the family.

After driving back to her home that day and getting many of her things, then visiting a bit with her after placing family photos around her room, I left her in a good space. She was listening to music with other residents and was enjoying herself.  Then on the ride home, I had a sudden pain in my pancreas.

I’ve had pancreatitis twice now and I know what it feels like. I wondered if last year’s bout was stress-induced, and now, I really think it was and is. I didn’t think I internalized my stress. I talk about it, commiserate with those in similar situations, and attempt to exercise most days to relieve my stress. Obviously I’m doing something awful to my body and I have no idea how to handle my stress. So, to avoid going into the hospital, I’ve drastically reduced my food intake. I’ve lost 4 pounds in 4 days. As much as I’d like to lose a little weight, this isn’t the way I wanted to do it.  But it’s worked so far in keeping me out of the hospital. (I really think this might be some bad karma coming into play. I’ve tried to keep my weight down for my entire adulthood, obsessed over it for too many days to count, and now, here I am, losing weight and not really wanting to. It’s like the Gypsy from Stephen King’s Thinner is after me!) Not sure I can keep up with it for many more days, so I’m slowly increasing my food and testing how I feel. This doesn’t mean I’ll stay out of the hospital, but I have hope. I’m also running a mile a day thanks to Runner’s World “Summer Run Streak” challenge and my friend, Sonya. It might not be the wisest thing to do on such little food, but it gets me outside and out of my head for those few minutes. (Make that 12 minutes since I am definitely running slowly.) I’ve also attempted meditating (that helps get me to sleep) and have tried to take LOTS of deep breaths.

 

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Stressed much?

One of the most difficult things about Mom being where she is are the phone calls. Yesterday Mom had such a great day and told me she was “happy” to be there. That was pretty amazing and something I never heard when she was at the other place. And yet at 8:30 this morning I got a phone call from Mom, asking me to pick her up. I told her she needed to stay there. When she asked why, I told her because of her dementia. She then denied she had it. I should have known better. I never should have brought that up and just said she needed to stay for her health for a few days. Today I learned that this is called a “fiblet”. It is a “necessary white lie to redirect loved ones or discourage them from detrimental behavior.” The term “geriatric fiblet” was created at the 2000 World Alzheimer’s Conference. Who knew?

I went back to see Mom this afternoon since she asked me to visit during that awful phone call. I said I would. My husband told me I didn’t need to go. We had already had an eventful day, going to Mom’s house and taking care of a few things there, as well as dealing with the stress of having to meet “Jack” and hand over the cat. But since Mom is only 25 minutes away, I decided that I needed to do it for me. So I did and it was a brief but lovely visit. So tonight I can sleep well (barring no pancreas pain) and not worry.

That is the hope anyway.

 

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The Good, The Bad and the Exhausted

It’s been a rough few months for my family. My mother’s health and mind are declining faster than I’m able to cope with. My father’s memory is fading, too. My brother was in the hospital for a month and I ended up in the hospital for four days for pancreatitis. We were all feeling helpless and at times, hopeless.

But within those two months of ickiness, there was Mother’s Day, my dad’s birthday, and my birthday. My son finished fourth grade, his baseball season ended (hopefully his last season ever) and he grew another half inch.  I lost 5 pounds (although I don’t recommend pancreatitis as a way to lose weight). My husband, son and I all read a bunch of great books during this time, had several amazing sushi dinners at our favorite restaurantsocks, Ichiban, and we finally saw the movie, Wonder Woman.

When the shit started to hit the fan in May, I was finally running more after this long winter. I was up to 8 mile runs on Sundays. It was a great stress reliever, but it was also nice to have mileage goals in mind again. I had hoped to be at 12 miles by now, but my body had other plans for me. So this morning, after my first full cup of coffee in a month, I put on my favorite socks and went for my first run in three weeks.

I’m not gonna lie. It was really difficult. The first half wasn’t bad, but I started to lose energy just after mile one. Had to take walking breaks on the way back and finished the 5K with nothing left in me. Just thinking about the power of my sock capes flying behind me was the only thing that pushed me through that last quarter mile. The heat and humidity were a factor, too, I’m sure.  I nearly passed out twice after I got home (saw spots, light headed) and my energy didn’t really return until the evening.

I don’t know about you, but I’m not very good at treating myself well. But I really need to. I need to learn to be good to myself. I need to learn to let things go, to not stress over situations that I cannot control right now, or possibly ever. I need to listen to my body. I need to admit that it’s ok I don’t run as much as I want to and it’s ok I can’t eat whatever I want right now. It’s sucky, but it’s really ok.

Now that summer has finally arrived here in Maine, I’m trying to have a more positive outlook on at least the next few months. If I can’t run as much, I’m hoping to take more walks in the sunshine and try a little more weight lifting. If I can’t eat ice cream every day (which is a crime), I’ll try to find yummy but healthier options. I’ll try to spend more time with all of my family, bring out photos to remind all of us of good times in the past and continue to plan good times for our future.

I will try to live in the moment. I will try to not wish away the weeks, wanting the painful bits to hurry up then go away. I know the pain will pass and I can get to the other side eventually. I just need to live through it, learn through it and move on. As my dad always says, “You can’t live more than one day at a time, right?”

Right.

So here’s to you and me, living in the moment during this summer of hope. Let the good times roll!