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!

Just Run

It’s been a wacky few weeks at work and home. There seems to be a lot of anger and fear drifting from place to place and person to person. Tension is high yet I don’t feel stressed until the evening, when my chest feels tight and I realize I haven’t taken a deep breath for much of the day.

Except when I run.

The anniversary of my mother’s death was a few days ago and the days leading up to it, I didn’t think much about it. I tried to push my emotions down deep and the memories away.

And then I ran.

During a typical 5k weekday morning run, I kept feeling this odd pressure one inch above my right wrist. It felt just like my mother wrapping her fingers around my arm, like when we would compare how skinny our wrists were. We could both easily wrap our fingers around each others forearms with our fingers touching because we both had (and have) bird arms. I ran down the road and kept glancing at my right arm. I started to laugh out loud until a sob escaped my lips.

But I kept running.

Tonight, after seeing Facebook memories of my mother keep popping up on my phone, I decided I had too much energy to burn off and went for an early evening run at 5pm. It was another weird day filled with putting out fires and forgetting my wallet and going to dentist appointments and a failed attempt to get my son a flu shot. So a run sounded good, even though I usually despise afternoon or evening runs. My body and mind are typically too tired during that time of day, but today I thought I could handle it.

The first mile and a half were lovely. The light streaming through the colorful leaves at that time of day were gorgeous. Then as I was passing this swamp:

Something made a HUGE splash and scared the shit out of me. I actually screamed. No idea if something fell from a tree, if it was a bullfrog, or just the Swamp Thing. Whatever it was, it completely threw me off. My usual turn-off is just up the hill from here and I made it there but I immediately ran out of gas. I started to trudge along for a few minutes, then walked for a minute. My breathing was off and I thought I might have to call home. I started to think about what I ate today and realized it wasn’t much. I felt depleted because I didn’t have any fuel left. Or so I thought.

I took it easy for the next mile, ran fairly slowly, watched five chickens hanging out in a field. Then for my last half mile, my second wind gusted through me and I flew home. I felt so light and free and fierce. The feeling was fleeting, but I tried to capture it:

I expect life to be busy and somewhat stressful for the next few months. I hope things will get better, but I will also try to remember that I don’t have control over everything. I will try to find that inner ferocity that I forget I have but something my mother exuded. Although I’m not good at letting shit go, I’ll do my best.

And sometimes I’ll say “fuck it all” and just run.

366 days

A year ago tonight, my husband was hooked to a ventilator to try and save his life.

Just over a year ago, my husband had been home sick for a week, thinking it might be the flu. By the weekend, there was crackling in his chest. I kept asking him to let me take him to the hospital, until finally on a Sunday afternoon, he said ok. Wal was so fatigued and weak that he barely made it down our 5 steps into the car. Our son, 12 years old at the time, hovered behind him, willing to help if needed. By the end of that night, we knew Wal had the flu and pneumonia. They checked him into the hospital and the boy and I went home.

The next afternoon, I drove to the hospital and I found my husband on oxygen but still gasping for breath. A respiratory therapist came in to explain what was happening and that without being intubated, he would die. Being the claustrophobic man he is, he refused to be intubated. After the therapist left, I raced to my husband’s bedside with what I’m sure was a scared, shocked and confused look on my face. We discussed the living wills we had just written 3 months before and I reminded him that he had said then that he would be willing to go on a ventilator if he’d be ok and wouldn’t be on it forever. But after watching my brother and parents die so recently, I had to ask: “Do you want to go?” He said no, but said it was getting so hard to breathe and didn’t know how much longer he could hold out. Thankfully, that’s when the doctor came in and we got the process rolling. He didn’t want me to stay and told me to go to our son because he needed me more right then.

It was so hard to leave him that night. I’ve never seen my husband so scared but also so weak and helpless and *needing* help from a procedure that he was afraid of. The next morning I waited to call the hospital from work to see how his night went. I knew they had to put him in a medically-induced coma while on the ventilator, so I’d have to talk to the nurses and doctors. The nurse I spoke to told me he had an extremely rough night and that “his numbers kept crashing” whenever they moved him. She asked if I was coming in but I hadn’t intended to until the next day. I asked if I should come in. Actually…I’m not sure I asked that. I was so afraid they were going to tell me to come in now because he might not make it…I didn’t even want to know.

Isn’t that horrible? I did NOT want to know the truth if the truth was that my husband was going to die—4 months after my mother, 11 months after my father and 2 1/2 years after my brother. No. I didn’t want to know. I don’t remember all of her exact words, but I do remember hanging up after the conversation, laying my head on my desk and crying. I was sitting in the exact same place when the nurse called from my mother’s bedside to tell me my mom was actively dying.

I couldn’t do this. I could NOT go through this right now. What would happen to our son? After all the damn loss we had been through, how was he going to make it to the other side of this?

But…Wal survived that night. And the next. And the next. He was touch and go for that whole week. I wasn’t allowed to see him after the third day because I had the flu and couldn’t come into the ICU. I called each day instead and talked with doctors and nurses, some days they thought his kidneys would fail and we went through one horrific day when they thought he had brain damage and did scans to find out for sure. Then things started to get better. They started to ease up on the medication so he would start to wake up.

Then he didn’t wake up. And didn’t wake up. And didn’t wake up. The day I was allowed to come back and see him, I held his hand for most of the day and read aloud to him and played music for him and just kissed his face when I could find a spot through the tubes and tape and kissed his hand and rubbed his arms. And cried some more.

My dear friend, Tiffany, came to my house one night to bring dinner and she sat with me. We talked while folding laundry and I had a pair of pants that had a long cord to tie in the front. But one side was stuck and I started to lose it because Wally always did it for me. But Tiff took it from me and worked on it and said it was ok. When I said that if he dies, there are so many things I didn’t know how to do in the house, like clean the heat pumps. “Don’t worry,” she said. “You can Google that.” It’s what I needed to hear right then. I’d be ok. No matter what.

And then, on Valentine’s Day, Wal woke up. It was a Friday and I got to talk with him in the afternoon, before the boy and I drove up to see him. Wal was a mess–he actually threw up on me–yet I didn’t care. He was alive. He would have problems, although we didn’t realize that then. His lungs have been irreparably damaged from the infection he ended up getting as well as from the ventilator. We found out this week he may also have had a mild heart attack while in the hospital or there was an anomaly while undergoing the stress test last week. We’re trying to stay positive so we’re going with the anomaly. 😉 But…he’s alive and working and managing. He needs to work on his health more, but I can only bitch at him so much, right?

A high school classmate of mine lost her husband last month. He was 50. They had been married for 25 years, just 2 years more than my husband and I. He was also in a medically-induced coma at the end. I’ve thought of this classmate every day since I heard. I only have an inkling of what she’s going through. I’m living what she had hoped would happen. And she’s living what I feared.

I’m telling you all of this, not only because it’s the anniversary of that horrible time, but also because my husband made me so mad tonight that I went outside and “angry shoveled” for a while. He snapped at me a few times and I was so damn proud for staying calm, so I took all the yelling I would do and put it into thrashing the snow around. I sometimes have to remind myself that I nearly lost the old man last year, and as frustrated he makes me sometimes regarding a wide range of topics, I still don’t want to live without him. Maybe a day or two….but not a lifetime.

Hug the ones you can tonight, talk to the ones you can’t, and remember the ones you wish were still here. ❤

Oh and yes, he did apologize. AFTER I shoveled part of the driveway.

How Can I Help You?

If you run or walk outside a lot in rural areas, you know there’s danger–people not seeing you or purposely trying to hit you with their cars, biting dogs, bears, you get the idea. I’ve had the misfortune to face all of those things. But tonight, as I took a pre-dinner walk to clear my head, I saw a truck pull over on the side of the road up ahead of me. First thought? This guy is going to try and hurt me. But I’ve got my phone, I’m not far from home and I can run. Then I hear a car coming up behind me on the other side and realize this guy is being incredibly courteous and kind. Once the car passes, the truck pulls back on the road and the driver gives me a big smile and wave. I yell, “Thank you!” because seriously, that shit never happens.

I continue my walk and can feel my eyes prickle with tears because I just want to sit down and cry all because of this kind gesture by a neighbor. But why is that? I don’t think people have been horrible to me lately, although there’s certainly judgments thrown around constantly and many by me. When I’m out with a mask, some people look at me oddly or with that frown. If I see you without a mask I know I look at you with that same frown. And it’s all just exhausting, isn’t it? I never thought of myself as being so judgmental before (although maybe I was?), but now I’m just….I’m really awful.

I’ve always had anger issues, but no one knew about them because I ate that anger. Just in the past decade have I been able to scream my anger out or sometimes run it out and occasionally breathe it out. I can (mostly) deal with it. But now? I feel so much anger and disgust and sometimes hatred towards people I never felt anything at all for before. Why do I care? Is it because their actions can hurt me or my family or my friends? Or maybe because they already have?

I read many of my friends’ social media posts and I feel so fucking helpless. I don’t know how to help them. Many of my friends are teachers and when I read how scared and frustrated they are, I just want to hug them and tell them this will work itself out and be ok, but I can’t. I physically am not allowed or able to hug any of them and this will definitely not work itself out. This will not “just go away” any time soon. Especially since no one can talk to one another if they have differing opinions on how to solve this mess. (Although it would be nice if we could all agree that facts are FACTS and not opinions.)

My friends who are parents, especially with little ones, are struggling just as much with all of this. Their posts and shared articles are just as fucking heartbreaking. I hear my friends that have adult children say how grateful they are to not have to deal with the education piece or having to stay at home and care for their child because they just don’t know how they could do it and still work.

Exactly.

How do you do it? Friends have cut their work hours, some have upped their anti-anxiety and anti-depressant meds or have finally begun taking them. Some are drinking more, eating more, crying more. (And I’ve done a little bit of all of these things as well as let my kid spend way too many hours in front of a computer.)

So what the hell are we going to do?

I don’t know. I wish I had some amazing piece of wisdom right here, but I don’t. I have sent wine to a few friends, cards to others, and messages or emails to some. If you own a business and want me to buy something, I’ll do my best to do that to help you keep afloat. If you need any of my librarian skills like pointing you in the right direction for forms you need to fill out or reading material to help you relax or what movie will help you cry then I can do that, too. But mostly I just listen. I don’t know what else I can do, but listen to you and truly hear you. I will respond if you want me to, or just nod my head in agreement and virtually hug you.

I do hope that some day, when the world is different but maybe feels a bit safer, I still like the person I’ve become. Right now I’m not so sure. I think at this moment I’m too selfish, self-centered and judgmental to really like who I am. Or maybe that’s the person I’ve become due to all the losses in my life. Either way, this pandemic has become a pivotal moment in our lives and it would be impossible to not be affected by it. I just hope that when all is said and done, I and you, too, will not have regrets about our words and actions towards others, and that we’ll be ok.

Let’s just be ok.

Doing ok?

I seem to ask that question a lot these days. I ask it of my family, my staff, my friends. I am asked the same question nearly every day, too. I think we’re all just trying to hold on and keep connected and check in to see if others are feeling as bad as you are.

How I feel most days…

Like you, there are good days and bad days, or rather good moments and bad days. Last week seemed particularly bad, at least at the end of the week. My son had a meltdown on Friday night, my husband snapped at me and his mother (over the phone) multiple times. (I had my screaming fits the week before so it was their turn.) Many folks here in Maine at least, seemed to have a similar reaction. It’s like we reached some breaking point of too many Zoom meetings or too much time alone or too much time with our families. Or maybe it’s because there’s talk of the “Stay at Home” order being lifted and we’re scared and we think it’s too soon.

I feel lost with little to no guidance. Nobody has definitive answers about much of anything. At my work there needs to be so many things put into place. Even if we can do some things like curbside service for library patrons, we are not ready to do so on May 1st. I feel like we put our pandemic plan into place in minutes, but we will not re-open as quickly. There are not enough supplies around to make us safe–masks, gloves, cleaning supplies–and then there’s the marking up of the library to stay 6 feet apart or counting people as they come in to make sure we’re not over the limit and do we install plexiglass or plastic sheeting at the desks? It’s all overwhelming and scary yet also seems necessary if we are ever to reopen.

And then there’s home. After being disabled, my husband is due to go back to work in a week. He’s already been warned that he may be furloughed. We already know our son will not be going back to school, so the online classes continue and the arguments getting him to do some of his work continue. Of course, then there’s just the uncertainty of it all. What will the future hold? What will our lives look like? Will the kids even be able to go back to school in the fall? Will the library be able to hold any kind of event this year? Will we all still have our jobs?

I try to not think of those last questions. I can’t. It’s a day by day world now, and I try so hard to live like that. As I’ve said many times, I’m not great at it, but my dad always tried to teach me to be patient. It’s ok to have plans, but know that they could all be shot to hell in an instant.


And just a little question for y’all. Have you gained any weight recently? I certainly have. At the beginning of March, I had pancreatitis for over 2 weeks and lost 11 pounds. (That was part of the 20 I gained last year and was trying to lose.) The day we closed the library was the first day I could start eating again. By the next week I had wholeheartedly begun stress eating. Fortunately I’m now running 4 times a week but the 11 pounds came right back anyway. And it’s kind of ok. I’ll continue to wear my fat clothes and occasionally munch on baby carrots, but a cookie or two a day is currently a must. The binging has finally stopped, but a little treat each day is my medicine–along with my antidepressant. 🙂

Stay as well as you can, everyone. Still looking forward to the days when I can hug you tight. ❤