distal pancreatectomy

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How I Am. Really.

As many of you know, recovering from any kind of surgery takes time. It’s typically not pleasant. There are wounds to care for, pain to manage, and a wide variety of little issues you may have never had and now have no idea if it’s “normal” or if something is wrong. For instance, my chest hurt quite a bit while I was in the hospital having the tail of my pancreas removed (distal pancreatectomy). When I asked one of my doctors about it, she informed me that my pain was legitimate since they were up in my ribcage at one point and she could see where my heart was beating. 😳

It’s been 2 1/2 weeks since the surgery and I’ve really been recovering well. I did feel awful after getting home and I was frustrated and angry and sad. My husband was sick with some kind of infection, and he did not have the capacity to take care of me. I’m not gonna lie–that was heartbreaking for me. I needed him and he just couldn’t deliver. Our son helped me tremendously though and one of my dearest friends in the world visited me with treats and conversation and it gave me a great boost. All in all I didn’t think I was doing that badly. And then I took a survey the surgeons sent me. And when I finished, they told me to call the doctor. It was because I wasn’t moving much, I was in pain and trying to go by what they did in the hospital, and I was honest about my depressed state. But I was grateful for the survey because it made me look at what I was doing and feeling, and I had to change.

Instead of calling the surgeon, I got up and moved every hour, took mini walks with my son, changed my pain meds to make sure something was always in my system (only Tylenol and ibuprofren). But I started to feel a bit better, or at least more in control. (And I wish I could tell you more about what I can eat and can’t eat, because it’s still a crap shoot.)

The next day, 8 days post-op, I went to see my PCP like you’re supposed to. I think I’ve talked about Dr. Lauer here before. He’s a great guy, my age, and has become like a family friend. I have his personal cell phone number and I text him with concerns and he actually responds. (We should all have doctors like this!) When he walked into the exam room, he first told me how great I looked. “Umm…you look 7 weeks post-op, not 1 week.” See why I love him? 😉

He did an exam, we talked about the surgery, what I was doing, etc. He asked me to not run or train for anything for 12 weeks, and for the first time in my running years, I was happy to say yes. The thought of running right now is painful. We talked about my spleen, and the hope that the few blood vessels going to it now can keep it healthy. We discussed the possibility of diabetes and having to take enzymes, but right now we just see how I heal and go from there.

Then he went over the pathology report with me. When Dr. MacGillivray removed the tail of my pancreas, he sent it to the lab for them to dissect it and see what’s what. Dr. Lauer was reading it out loud and then stopped. At this point, I’m still lying on the table after the exam because I’m tired and didn’t want to get up yet. I looked over at him as he’s reading and I said, “I’m not sure what that means.” He repeated part of the report and said, “You just sidestepped pancreatic cancer.” If I had put my surgery off, which is what the great doctors at Portland Gastro told me to NOT do (they said to please get it done within a year, but preferably before fall), then I might be talking about chemo in this post instead. I knew the lesions on the tail were precancerous but having my doctor (and then my surgeon) say that I was able to avoid pancreatic cancer, at least for now, was a bit mind-blowing.

Dr. Lauer then went on to give me this lovely philosophical speech about letting go of people or situations in my life that I’ve been fretting over. “This is a new path forward,” he said. He had a few medical situations in his own life recently and it’s made him look at his life and everything around him a little differently.

As he was giving me this talk, I got very teary of course. Not just because I was feeling grateful and proud that I took charge of my health and that my doctor listened to me when I had problems, but also because I was sitting in my doctor’s office at the age of 49 and being told that I had a new lease on life. But my beautiful, funny, big-hearted brother never got this speech. Instead, he was being told at 49 that he had to choose to either stay on those machines to keep him alive or die.

To say I was feeling a huge mixed bag of emotions is an understatement.

But…I was and am grateful.

I hugged my doctor before I left, then told my son who was in the waiting room the news and he smiled a big smile and hugged me. My husband had a delayed reaction, but there have been lots of “I can’t live without you” moments. Plus we’ve agreed that he has to die first so there’s that. 😉

My appointment with my surgeon the following week was not so joyful. The physician’s assistant was awesome, and she told me how fabulous I looked and was happy with my numbers. The surgeon, Dr MacGillivray, doesn’t have the best personality. He knows his shit, which is what matters, but he did tell me that it’s possible the rest of my pancreas could still become cancerous, and we have to scan it each year to check on it, as well as my spleen to make sure that it doesn’t die. I asked, “Since I had precancer in my pancreas, what about the rest of my body?” But he couldn’t answer that, and it left me feeling bereft.

When I left that office, I ended up going to Holy Donut and eating a gorgeous gluten-free donut while walking around a park in Portland. At first, I was like, “Ok, Holly, just enjoy this delicious treat and the sunshine and the beautiful space.” And I did. And then I ended up angry eating the last half of it. I should have thrown part of it to the ducks, but I said, “Fuck it” and ate it. (These are delicious and large and expensive, so the thought of throwing away any of it seemed insane.)

Later that day I cried and cried with a dear friend about the whole situation. We talked about it and I had to just let all of that news settle. I had been on high, thinking I had dodged this big bullet, which I did, but then the surgeon was waiting for more rounds to shoot my way.

So what did I do? I texted Dr. Lauer. He reminded me of the major scans I had done in the spring that showed no cancer anywhere else and I didn’t have symptoms of other cancers. He told me that he’d let me know when to worry, but now wasn’t the time. 🙂

And so I’ve taken his advice. My job now is to heal. I have definitely been doing way too much–I was walking up to 2 miles at a time, and that would have been fine if I didn’t try and do other things during the day. But I did and this past weekend I was really sick. Naps helped but overall, I felt awful. Today, though, I started my day with a half mile walk, then went to work for a few hours. Came home to rest and worked some more but am able to take more breaks than I could at work. I’ll keep pecking away at it and do my best to get stronger.

I’m not sure what I’ll do with my newfound lease on life or wake-up call or tremendous gift. I don’t want to squander it, you know? Maybe it just means I keep going down the path I started before the surgery–doing more activities that make me happy and making my voice heard about issues that matter to me like LGBTQ+ rights and being pro-abortion and that I want to fight for a longer bereavement leave for people in this country. (Having a 3-day bereavement leave that most organizations “allow” is a slap in the face to every human being that has lost another human being.) Maybe it means cutting more people out of my life, or maybe it means letting even more in.

Whatever my “path forward” will be, I hope some of you will join me. Or who knows? Maybe I’ll join you instead. ❤

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Home

Hi, everyone. After 4 days and 3 nights in the hospital, I was able to go home yesterday after my distal pancreatectomy…and I still have my spleen!

*insert party noises here*

Does this mean I’ll always get to keep it? No. It doesn’t. When the surgeon took the tail of my pancreas, he had to cut off the main blood supply to the spleen. BUT, there are 3 smaller blood vessels still traveling to the spleen, so the hope is that they’ll be good enough. *fingers crossed*

The 3 squiggly lines are the good blood vessels and that potato thing on the right is the spleen. The dark mark that aligns the penis-looking organ is the main blood vessel. The penis-looking thing is the tail of the pancreas that is no longer in my body but in a lab somewhere being dissected and searching for what I hope is a lack of cancerous cells.

Now it’s time to heal and to understand what each weird pain I feel means. I’m still incredibly bloated from the surgery which is very uncomfortable. I have some pretty major wounds on my belly and a hole in my side that I have to keep changing bandages on…or for? I swear I’m not on any narcotics anymore, but I’m still pretty fuzzy and weak. The pain is all controlled with Tylenol and ibuprofren now. Or mostly controlled. I’m able to eat a little every few hours, but this body needs to discharge, you know what I mean?

Thank you again, for the many well wishes, prayers and good thoughts. Now we’ll just wait and see what the future brings. I raise my cup of water to all of you in gratitude and hope and good health. Cheers to you, my friends!

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Thanks, Y’all

Tomorrow morning at 8:40am, a surgeon in Portland, Maine will be removing the tail of my pancreas along with those nasty precancerous tumors that are attached to it. He may also be removing my spleen, but we’ll keep our fingers crossed that won’t happen.

Having a distal pancreatectomy has been frightening to think about, but I’ve felt quite calm about it since yesterday. There’s nothing more I can do now, right? I have my workplace as settled as I can, I finished the password book for my family, and yesterday I ran my last 5K in what I expect to be at least 3 months.

Pretty happy to get the run in.

So as they’re prepping me tomorrow, I will pretend I’m back in that sensory deprivation tank I tried out a few weeks ago at Float 207. It was really lovely. I chose the purple light and I’m so glad I did.

But after imagining this calm space, I know I’ll be thinking of my boy, my family, my friends and all the incredibly kind words and thoughts you’ve sent my way. Thank you.

I’ll see you on the other side. ❤

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Prep Time

My distal pancreatectomy is in two weeks. In the past month I’ve had scans and blood work and so many phone calls about anesthesia and what to do the night before and the morning of. But I’m also prepping my staff and my family and trying to do everything I can to make this absence be as smooth as possible. I’ve ordered extra supplies for work and have made a crazy-ass schedule with part-time staff and substitutes galore and volunteers. I’m training some of those people next week, but like I’ve said before, I do have confidence in everyone. I’m just trying not to stress anyone out more than absolutely necessary. Except myself, of course.

It’s been hard to focus on one thing lately. As I typed that last paragraph? I actually stopped and emailed one of the new subs to update them on their schedule. Why? Because I’m afraid if I don’t do things as soon as I think of them, they’ll be gone from my brain and by the time I remember, it’ll be too late.

Here at home I’ve also been prepping, but more like prepping for my death. I pay the bills in this family and although we have a password notebook anyone can consult to pay said bills, it’s kind of a mess. I know most of the passwords by heart, but if my husband would have to pay a bill, he’d have no idea where to pay or how. We do have a budget and bill payment schedule on our refrigerator, but he doesn’t know which things are automatically paid and which you have to pay online or that one thing we actually have to send a check to or pay in person. So I’m in the process of re-writing our password notebook and have re-done the budget with AUTOMATIC written on certain things. I’ve added all of our passwords to various streaming services to the notebook along with bank info that he probably doesn’t know. I’ve dug out my living will to bring to the hospital and to send a copy to a friend because I want to make sure several folks have it.

When I started doing this a few weeks ago, it made me feel good. I like to be prepared. Remember that post about preparing myself and my home if my husband were to die tomorrow? That shit just helps me cope. But this week? Oi. So not good.

The stress at work felt insurmountable yesterday. Like a child, I actually closed my eyes and put my hands over my ears at one point and told a co-worker to please stop talking. I could feel a full-fledged anxiety attack coming on and I just couldn’t answer one more question. It scared me. Their questions were valid and they should be asking them, but I just COULD NOT deal with them at that moment. I took a few minutes to breathe and we talked and then I was able to answer them again. But that anxiety lingered into the evening and I ended up eating three brownies trying to make myself feel better. Instead I nearly hyperventilated when it came time to go to bed. I put my head between my knees and tried to breathe. I was finally able to lay down, but it took effort to not think. (One of my cats snuggled in on my shoulder and purred away, so that helped.)

Today was a bit more of the same, but not at that same level. I still don’t feel like I’m breathing normally, but I am able to take a deep breath. There’s definitely this level of worry and concern of the unknown–as in how my surgery will go and what my recovery will be like–but also anxiety of the incomplete tasks that still need to be done.

And did I tell you I’m turning 49 next week? The same age of my brother when he died? And that he died at the hospital I’m having my surgery at?

Yeah. I’m freaked. I’m scared and sad and angry and worried and all the damn things.

So…I told my husband last week that I want a session at a local sensory deprivation tank. I have been doing all the things I can to try and relieve stress. First I did the bad things–drink alcohol (which I can’t do anymore until sometime after my surgery or never again) and eat junk food or just eat non-stop. Then I did my usual schtick–run, read with mellow music or nature sounds, walk near the woods (there are so many ticks right now that walking in the woods stresses me out), take my usual anti-anxiety med, chat with friends. But sometimes all of the good things are just not enough.

My husband is the worst gift giver in the world, even when I tell him exactly what I want. And trust me when I say I don’t ask for a lot. I don’t have particularly expensive tastes, and I’m not into jewelry or flowers. Yet typically, even after 25 years of marriage, the old man sometimes just doesn’t quite get it. But this time? This time he came through.

In a few days I’m going to give this thing a try. I’ll float in a tub of water with 1200 pounds of salt. I may have lights and music, or I’ll skip all of that and just be. I have no idea how this will make me feel, but I’m looking forward to giving it a shot, to trying something new, to try and find a little peace.

May you find your own bit of peace this weekend, too. ❤ Hugs to you, my friends.

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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.

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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!