It’s been 5 years since I wrote my family’s annual holiday letter. Since my brother, Phil, died on July 23, 2017, I’ve had no desire to write a happy holiday letter, or any holiday letter at all. My favorite time of year became the time of year I dreaded.
I no longer dread Christmastime, but I also don’t look forward to it like I used to. I enjoy the music, the lights, the gift giving and receiving, the stories, and the movies (I’m an absolute sucker for holiday romance films). Yet all of those things blend with loss and longing for the people that are no longer here.
I’m currently in my kitchen typing this with cookies cooling on the counter and George Michael crooning a Christmas tune about heartbreak. This is my element, folks. Yet my stomach and chest are tight from all the withheld tears I just refuse to shed today.
Phil should be here right now. I should be slapping his hand as he tries to steal a cookie. We should be drinking tea at this very kitchen counter, gossiping about one of his friends or editing his latest erotica story. Instead, I keep looking beside me, just fucking wishing for him to appear.
I do understand why I’m feeling this grief so intensely this week. Besides it being Thanksgiving (which my brother came over to my house every Thanksgiving), I stumbled across a bunch of photos from the last Christmas we had with Phil. At first, I was just in awe and was enjoying seeing his face. Then I became across this photo:
This is my then 9-year-old son, leaning over to kiss my brother on the cheek. They were both enthralled with the new Yoda my son received, and honestly, they both just loved each other fiercely. When I saw this photo, I gasped because I forgot its existence. Then I sobbed. And sobbed. I rocked my body and just sat in that feeling of immense, overwhelming grief.
I took a long break from looking at any photos, then I dove in once again last night. This time, I came across a few short videos of my son as a toddler and my brother’s voice or laughter is in them. There’s one video in particular that my entire family knows and we’ve all watched it probably countless times just to hear Phil’s voice and laughter. He’s reading to my toddler and it’s sweet and funny and wonderful. My now 15-year-old son came over to me as I started to go through the videos, and he asked to watch and listen to that one video a couple of times. “I haven’t heard his voice in years, Mom. But it’s like my chest lit up when I heard him!” This kiddo of mine then thanked me and asked for a hug. ❤ I’m a really lucky mom.
So….that letter? I really thought this was the year, but I guess it’s not. I’m realizing now that I may not be able to write it again. Each year I did a bit of a recap of what was happening in all of our lives, and although we’ve made some wonderful memories in the past 5 years, we’ve also suffered so much loss that it’s difficult to do an annual letter without talking about who or what we no longer have.
Maybe a January letter about what we hope to accomplish in the new year? Maybe.
Until then, enjoy these pics of my dear big brother. If you watch the video, I hope you can see why I miss him so much. (And you can see what an annoying mom I can be.) Phil brought us so much joy and I am certainly grateful we have at least this video to refer to so we can see and hear him whenever we want. Obviously, it’s not the same as having him here with us, but it’s something.
For the past few weeks, my work has taken over my life–something I’m always telling other librarians NOT to do. But in this case, I was fighting for the library I work in and for the community it serves. It was a battle worth fighting and it looks like things might be ok. In another month the town’s budget will be voted on, and we’ll see how things turn out. The community has spoken and have shown their support for the library, its services and its staff. It was an amazing thing to see the community come together and show their love for this institution and for the work we do.
After this long, exhilarating yet exhausting week, I was looking forward to a weekend at home, reading a few books and getting some cleaning done. Yesterday morning I decided it was time to change things up. We have a sectional couch in our living room, and half of it has had some issues for some time. It was time to get rid of it.
As I pulled the cushions from the couch, I listened to Anderson Cooper’s podcast, All There Is. (Thanks, Anne.) Cooper begins the first episode of the podcast with cleaning out his mother’s apartment after she has died. This included finding some of his father’s and brother’s things. His father died of a heart condition when Anderson was 10, and his brother died from suicide when Anderson was 21. Most of the episodes talk to other famous people who have faced tremendous loss in their lives.
I had my earbuds in, listening to Anderson’s voice break when he discussed his dad, sometimes cry when he talked about either of his parents or brother. While I listened, I found myself really getting into tearing apart this couch. I took a sledgehammer to part of the wooden frame, I cut the fabric in places and other times I tore at it with my bare hands. At one point I found myself crying on the floor, thinking about my brother sitting on this very couch with me. How we would sit side by side and watch a movie and drink coffee together or talk about our latest read. I thought about my mom’s last Thanksgiving and how my son sat between us on that couch as we watched a Christmas movie together.
I was angry that my brother wasn’t there with me, helping me tear that fucking couch apart. I was angry that my mom wasn’t truly my mom for so many years before she died and devastated again that she had to die in a god damned nursing home.
And then….I wasn’t angry. Just achingly lonely. Although I have my family and my friends, sometimes the people I want are no longer here and I just feel so lonely without their presence, without their conversation and laughter and love.
Yet, what could I do at the moment? I could pound the shit out of that couch. So, I did.
This morning, though, as I drove my son to school, he turned to me and said, “You know what I realized this weekend? Right after I left work, my first job, I realized that I couldn’t share that first with Uncle or Grammy.” I nodded my head and sighed, “Yeah,” then rubbed his arm. We sat in silence the rest of the ride and told each other that we loved one another as he left the car.
As a parent, I celebrate so many of these firsts my son experiences–his first steps, first word (“no” by the way), his first ice cream cone, his first plane ride–and now I celebrate and grieve each of his firsts, and I have since my brother died 5 years ago. I just never realized that my bright, beautiful boy did, too.
When my brother, Phil, died, I was not available to my son. I thought I was to a point, but when I think about it now, and the fact that I didn’t realize that my kid would be missing his family just as much as me, I realize that I fucked up.
Yet I know I couldn’t have done anything different. During those dark days, there was a time when I was ready to die myself. I didn’t know how to live in this existence without Phil being here, too. To help my son was pretty much impossible at that time. I know I did try to listen to him and spend time with him, but once my mom moved in a few months later, my kid couldn’t count on me.
I truly hope that I’ve done better by my son since then. The amount of grief he’s had to experience would be insurmountable for some adults. He’s had to see me go through this loss while going through it himself, and literally having to pick me up off the floor. (I fainted after my mother’s funeral while he and I were home alone.)
I’ll do my best to keep the memory of my family in the present. We’ll keep acknowledging all of those firsts and talk about how proud the family would be, or what hilarious jokes my brother would tell. And I’ll keep taking my child and myself to therapy so we can continue to heal or at least function.
After all, we only have so much furniture we can tear apart.
As I continue my hospice volunteer training, my knowledge about both the dying process and ways to make those that are dying comfortable, seems to grow exponentially. For instance, the pain and suffering that some people go through as they die actually anchor them to this world. Yes, they will still die eventually, but with good symptom and pain management, you can lift that anchor and help them sail on to wherever they need to go. Of course, I will not be helping in the pain management portion. As a volunteer, I’m there to listen, give comfort in my presence (I hope) or maybe even help around the house. If I can do anything at all to provide assistance to someone in their last days, or to the families that are dealing with their grief, then I’m right where I’m supposed to be.
My training and my husband’s health has prompted some overdue conversations. My husband and I talked a lot about the heavy hearts we’ve all been carrying lately. Our son and I are always on alert when we walk into our home, wondering if we’ll find my husband dead. Although my husband doesn’t want to die, he’s not afraid to. He has his faith, so what worries him more is the journey in-between life and death, the pain and suffering that often accompanies that. I talked to him about what I learned, and hospice care is all about helping with that journey, to make a person dying more comfortable and to improve their quality of life while they are still here.
Of course, we hope he still has years left, but we never know, do we? We’ve talked about having to apply for disability because we’re not sure how much longer he can work. He’s never fully recovered from his ventilator/coma horror show in 2020, but after last year’s heart attack he’s much worse. BUT he does have good days, and today was one of them. We’re in a good space today, so we’ll take it.
Besides my hospice knowledge increasing, do you know what else has grown incredibly? My bucket list!! Wait, no, my “Life To Do List.” If you have a better name, please tell me. I’m not loving the list names I’ve found so far. I chose this name though because my list isn’t all adventures or traveling. I have things like: Learn CPR and First Aid, Take Swimming Lessons, Make Homemade Pasta. But also, of course, I have: See the Grand Canyon, Go to NYC at Christmastime, Walk the Berlin Wall Trail. And within some of my activities or adventures, I have the people I want to see or spend time with. I LOVE spending time with myself, but some of these things would be so much better with people I enjoy being with. Because ultimately? Those people are what really make my life joyful. Vacationing on an island would be rad, but what would really make it spectacular is to do it with my girlfriends. Seeing the Boston Red Sox play is an experience I only want to do with my sister, and I can wear our father’s Red Sox cap and eat a hot dog in his name.
Will I get to do everything on my list? I doubt it. Even if I have the opportunity to get really old, I’ll never have the funds to do it all. Also, I have “Run a Marathon” on my list. Yeah, that shit might not ever happen. Since my distal pancreatectomy surgery, I still can’t run over 4 miles. Yet I also haven’t been training as much so….who knows, right?
Look how damn happy I am when I run or walk! This is a genuine smile. Maybe I can do the Jeff Galloway run/walk method for a marathon? I don’t know. We’ll see. In the meantime, I’ll keep on adding to that list. And I’d love to hear what’s on your “Life’s To Do List.” If Visit Maine is on your list, I have a couch to sleep on or a tent to sleep in. I got you. ❤
I woke up thinking about my mom this morning. Actually…I woke up thinking about everything I did wrong with Mom during the last two years of her life.
I just began training to be a hospice volunteer. Much of our homework is reading about dying and watching videos about hospice care as well as the dying process. In just two weeks I’ve learned a lot about what actively dying looks like (which I witnessed with Mom) as well as what all of the signs actually mean. For instance, when someone seems agitated as they are going through the dying process, the person could have a full bladder, could be in pain, or maybe the music being played in the room reminds them of a particularly bad time in their lives.
I was with both of my parents as they lay dying. Much of the literature and information I’m consuming reflect my own experiences. Stories of people dying who talk to a dead loved one or reach out to something that you can’t see. (Dad saw his grandfather.) Stories of people dying after their spouse leaves the room or once their adult child finally made it to the hospital after they flew across the country to see them one more time. (Mom died less than 5 minutes after I left the room. My sister said it was because she was trying to protect me one last time.) As I work through the coursework, I feel like this is all in my wheelhouse–bereavement, dying, extensive grief, hospice care–these actions and feelings have defined my life for the past five years. I feel like I’m ready to listen to others now and be present for those families that are suffering and for that person in hospice care. And to be honest? Although I’ve set some boundaries in my life, I know at some point I may need to be my husband’s caregiver as he continues his congestive heart failure journey. That journey may end in hospice care. I want to be prepared and help him prepare for what that involves.
This morning, I started to doubt my hospice volunteer readiness. I watched two hours of videos yesterday about the dying process and Mom’s birthday is in two days, so of course she’s on my mind. But I felt sick thinking about Mom being in the memory care unit of the nursing home. I know she had many, many good days there, and I know I was not able to take care of her. (I tried but was not successful.) But what about once she went into hospice care? Why didn’t I bring her home? Could I have taken a leave of absence and taken care of her here? Would she still have died just three weeks after she went into hospice care, or maybe she would have lived longer?
I’ve been doing exactly what I tell people not to do. I have no idea how things could have been. She could have died sooner, or what if she lived even longer? Could I really have afforded to take a leave of absence? (I already know the answer is “no.” And if you’re one of those people who say, “If that was my mother, I would have stayed home with her,” then congratulations to you for not living paycheck to paycheck.)
Don’t second guess yourself, I tell people. I want to say I did the best I could with what I had, but I’m not sure that’s true. Tomorrow I may feel differently. I may be ok with how it all went down.
Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.
What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?
What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?
In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”
I’ve discovered that there is indeed a time when I will say these sentences and that time is now.
After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.
Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.
Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.
Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.
I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”
These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.
“So long as you write what you wish to write, that is all that matters; and whether it matters for ages or only for hours, nobody can say.” ― Virginia Woolf, A Room of One’s Own
I love to write. I love to write what I want to write. This might be poetry, letters, even the occasional library report can bring me joy. And I most certainly love to blog, to share my life, my running, and my adventures or lack of, with you. It helps me align my feelings, my thoughts, and my mental health in a way that allows me to keep functioning. I’ve always called it my therapy, but it’s really more than that. I tell my therapist many more intimate details of my life than I could ever share here, but I hope that in some ways I can help with this little blog–help myself, assist you with whatever is troubling you (often my brutal honesty allows you to tell me things you wouldn’t tell others), and for you to help me.
In my last post, I discussed trying to find ways to feel contentment and to explore new ways to enjoy this life of mine. I applied for my passport like I said I would, and I’ve started to create a space of my own in my basement. I want room to not only do my volunteer work, but I really, really want a place to write. In all honesty, I want a space where I won’t be asked questions or see the dirty dishes waiting for me or hear the hum of the refrigerator calling me and convincing me I need a snack. I just want to be present, with my laptop and my words and my thoughts.
Sometimes, though, I just want to be by myself and maybe a podcast or an audiobook. I don’t always need to write down my own thoughts but listening to others can be just as therapeutic. I also want and need to move my body and sweat and feel the sun on my face. (I’ve been told that I’m a bit cranky when I don’t exercise.) Running still isn’t in the cards for me, but walking is still a relief. Being outside also can feel like “a room of one’s own.”
I walked over 5 miles this morning, and as I looked around me, I couldn’t help but smile and take deep breaths and just be in awe of the beauty of where I live. Although this isn’t truly my own space, it can feel like it and it allows me to be in the presence of greatness.
Then there are times like tonight, when all I want is to be with my thoughts and my laptop. That’s when I escape to the basement. The space I’ve created is…odd. I’m using a borrowed table (which I really need to return), a borrowed office chair (which hurts my back after a bit), a small bookcase, a lamp, and a heater for later in the year. My son says it’s homey, with my rocking chair and grandmother’s knitted afghan off to the side. I have two candles in large stands and a few throw rugs under the table and in front of the rocking chair. On the wall is a bunch of Trevor Project info and this:
A friend made this poster for me for my birthday. It was first said in a text, but then I asked for it to be in a larger form because it was something I didn’t want to forget. It’s poetic and beautiful and not something I’ve ever thought about myself. For someone to see this bravery in me that I never recognized, gave me hope. It made me think that I could in fact be the person I’ve always wanted to be: a good human, one with many flaws, but a person that listens and empathizes and cares about others.
I am, most definitely, not always that person. Often, I don’t want to listen to anyone else, I don’t care about anyone else, I just want to go back to my home and crawl into bed. I have many days when it takes all my energy to put a smile on my face, place one foot in front of the other, and get through the day. But I think we all have those days, don’t we?
Although my friend sees bravery in me that’s difficult for me to see, I do want to be brave. I want to stop always doing things I’m expected to do or being who I’m expected to be. I want to take risks, but I’m frightened to do so. I suppose that’s where the bravery should come in. 😉
Is there something or someone you want to be, but don’t think you are? Is there a place you want to be in your life, but not sure how to get there?
Let’s try and figure these things out together. I’m willing to try and figure out who I am or want to be if you are. As my friend Johnny just said to me recently, “Take the leap! You won’t regret it.” Will you join me?
I’ve always enjoyed Mary Oliver’s poetry, and “Wild Geese” is one of her most popular ones for good reason. But it’s been a while since I read it, and earlier this week, I saw the first line of the poem, “You do not have to be good” in someone’s email signature. It stopped me from moving past the email, from doing much of anything really, except crying. What was it about that line that got to me?
I found the poem and like nearly every other time I’ve read it, I got stuck on the line “Meanwhile the world goes on.” I never hated that phrase until my brother died. The world was supposed to stop that day. I wanted what W.H. Auden wanted in his “Funeral Blues” poem, to “stop all the clocks, cut off the telephone.” How could the people on the planet be so cruel as to keep on living while my brother could not?
And now here it is, five years later today. This shit hole of a world didn’t stop. It’s certainly gotten worse, but it hasn’t stopped.
So, I went back to “Wild Geese” by Mary Oliver and read the poem again. I stopped at my usual line, then finally pushed on. I had never understood the poem, really, because I could never finish it. My anger and grief built a wall tall enough for me not to see or hear anything further after “the world goes on.” Now I finally see what the fuss is about.
“Wild Geese” is about living. It hasn’t been easy for me to really do that these past five years. I tried but have often failed. I did start learning to appreciate the little things in life that make me laugh or bring me joy–just watching dragonflies flit around my head made me so happy that I logged it in my brain to remember later. I have tried to cement a few friendships and relationships that I never, ever want to lose. But I also cut a few people loose that were not good for me. I want to and need to do more of that in the future.
I’m not much of a risk taker, so I won’t be skydiving or jumping off cliffs to swim with sharks. I won’t be traveling the world, only because I don’t have the financial means to do so. But I’ll at least get my passport so if a windfall of cash comes my way, I might finally be able to go to Europe or even see my lovely friend and soul sister, Becky in Mexico. But what else?
Knowing I was a step away from pancreatic cancer and also knowing that my big brother never got this second chance that I have now, I don’t want to piss it away. But unfortunately, bills still have to be paid and responsibilities still have to be tended to. Is there a way to fit in this new vigor for life into my current life?
I’ve recently begun training to be a volunteer for The Trevor Project. This will require one 3-hour shift per week and the training is 10 weeks long. It’s quite a process and I love it. I’m learning so much and honestly, it’s really difficult. But I’m so, so happy to do it. Watching my son and his friends try to live their lives and seeing how much pain some of them have gone through specifically from being part of the LGBTQ+ community, has given me the push to help more young people like them. And hopefully I can.
I’ve also signed up to train as a hospice volunteer. Training starts with that in the fall, with a 2-hour shift requirement per week. This has been a passion of mine for a while now, especially after talking and working with Mom’s hospice nurse. I’d like to be able to help patients and/or their families in any way I am able.
So…back to the “You do not have to be good” line. There is SO much in that line to unpack. First, I saw the sentence in a hospice worker’s email, and I think it’s one reason why it caught me off guard. I had forgotten the line and maybe when I read it before it just didn’t mean much to me then. But now it means everything. I think I cried because I immediately thought of my brother. Much of his life, especially his adult life, he lived with no excuses and no regrets. You didn’t like how he lived his life? “Fuck you,” he’d say and sometimes with a smile. To me he always lived as large a life as he could with what he had. He was loyal to his friends and family and loved us fiercely. He was a voracious reader and wrote humor, horror, romance and erotica, and sometimes all in the same story. He was known for his morbid and often perverted sense of humor that often had you shaking your head but also holding your belly from laughing so hard. He was a giant of a man with a giant heart.
But again, why did “you do not have to be good” resonate? Because Phil was like that. He wasn’t always “good” and certainly didn’t get on his knees to repent (he got on his knees for other activities), but he loved what he loved and loved whom he loved. And he lived. For those few 49 years and 33 days, he fucking lived. No excuses. No regrets.
I’m trying to be like my big brother. I want to fucking live, too. Volunteering at these two places is one way I can live more like I want to. It may seem like this isn’t me jumping out of an airplane, but it sort of is. This is me putting my heart out there and seeing people when they are at their most vulnerable–asking for help because they don’t feel heard or understood or loved and just want to die, and those that are actively dying or watching their loved ones go through that process. I suppose I’m trying to save lives with one position and help those die with dignity with the other.
Will these activities make me happier? Eh, I don’t even like that word right now. That’s a blog post for another time. But I think the work will help me feel fulfilled. Being a librarian was always what did that for me but being a library director is not the same. I’m fortunate to work in a small, rural library so I still get to know and help people, but nothing like what I did before. Now there’s too much of the bureaucratic bullshit and that part sucks. Right now, though, it’s where I need to be.
There are other things I need to do to make my life a better one: getting rid of more “stuff,” finding my own space in my home, eliminating more debt, writing and reading more poetry, keeping up those forever friendships and relationships, and having more new experiences. Will I have time or energy to do it all?
Probably not, but I have to try, right?
Not just for me, but for Phil. At 49 years and 39 days old, I am officially older than my big brother. It’s time for me to try and live, to prove to him and to myself, that I don’t waste this “one wild and precious life.” (Seriously, Mary Oliver was kick ass, so check her stuff out.) Sometimes that might mean I take a walk to observe the leaves dancing in the trees or to see that momma turkey and her adolescents wander the field instead of finishing a book I was supposed to read for work. Or it might mean giving up an evening of relaxing to talk with a friend who needs a shoulder to lean on. Or it could mean that I make some bigger changes in my life and figure out who Holly is.
Thanks for coming on this journey with me. I wish Phil were here, too. I know he’d have a lot to say about it, and it would probably be a bit sarcastic and/or hilarious, and also said with love.
If you ever met my brother, I hope you think of him today. I won’t let him be forgotten, so even if you didn’t know him, think of him anyway. Just know that you probably would have liked him. I certainly did.
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. ❤
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*
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!
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.
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.