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. ❤

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.