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. ❤

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!