Keep the Faith

HEALTH UPDATE: The surgery was a success! I’m still healing and it hasn’t been easy, but it’s going better than I could have ever imagined. There will be follow up appointments and scans but I think it’s safe to say that at this point, I’m done!

Ramblings….

What does one do when they have defied all the odds and survived a killer disease like pancreatic cancer? Well. I guess I get to find out!! Seriously. I am really having a difficult time trying to wrap my head around this. In the past few weeks as I’ve let my body rest and recover, it’s been one bumbled thought after another. Not knowing what to think. Is this real?

As the days go by, I feel myself getting excited to live this fairytale life. My thoughts and ideas of next stages ramp up as my energy has. Right now though, my thoughts are in the lead, leaving my tired body lagging behind trying to do all that my mind is ready for. I know it will catch up, but I’m not one to like waiting.

I never in my wildest dreams ever imagined that my life would change so much in a few short years. I went from death bed to get out of bed! There is so much to do. There is so much I have learned. I intend to make the most of this generous second chance that I’ve been given. There will be no pressure to do this. It will be done because I want to.

One of the greatest lessons I’ve learned is realizing what things in life truly mean the most to me. It isn’t a big bank account and it isn’t “things”. It isn’t following social norms. It isn’t pretending to be someone I’m not. It isn’t about pleasing people when being stared down to do so or feeling guilty to say no. It’s about peace. Peace in my heart and how I treat others. Reaching out to people in pain. Congratulating people for their happiness. Letting little annoyances in life go. It’s about nature. The sky, the trees, the wind! It’s about family and friends. It’s about me. My mental and physical health. Taking time to make sure I’m ok. Taking time to make sure my body will be ok. My body has been through a lot.

Yes. The tumor monster is dead. There is still much work to do. I have maintenance to take seriously. I’ve never been one to succumb to guilt. Exercise! Eat right! Do this. Don’t do that. Right now I’m very motivated to do the right things. I believe my surgeon when he says I need to cut out added sugars in my diet, among other things. I need to do this or it will shorten my life. What? What life? I have pancreatic canc…..oh wait. What? Oh. Yes, that’s right. It’s gone. Gone.

I would think it would be easy to flip that switch and move from dying to the beautiful prospect of living. Living for years! It hasn’t been easy at all. It has been a cluster of emotions and confusion. The mind is so powerful. I think mine has been short circuited. Maybe I just need to go in for repairs. Until then, the coming months should bring some pretty interesting things. I feel like I’m starting my life over. I will use the things I’ve learned as my guide. The craving I’ve always had for balance in my life will not be overlooked. Maybe I can do work, family, fun and self love all in the same life. I won’t lie. I’m confident. Nothing after cancer seems too hard.

HEALTH UPDATE: Open Distal Pancreatectomy and Splenectomy scheduled for February 12, 2024.

Ramblings…

This feels so unusual. Something I used to do so often and so quickly. So easily. Writing and sharing has become a distant friend to me. I still love the friend and for every additional word that is written, it feels more and more like no time has passed at all but I cannot explain the disconnect. What has changed?

The year 2023 went by so fast. There are different categories in my life. Family, friends, events. One category that has barged it’s way to the forefront. The health category. Isn’t this what my life has become all about? Health? I’ve never had the luxury of not thinking about my health, being a self diagnosed hypochondriac and all. But this new realm of hyper focus on my health is growing to be ridiculous and beyond all consuming.

As I sit here on the first snow day of 2024, it’s time to dissect what the actual fuck is going on inside my head. Maybe it will help me to reunite myself with writing. I know in the past, writing has been my greatest release. My answer to all things unsettling and misunderstood. I know that it was my therapy. What happened? I almost think that I’ve been too far gone to even concentrate long enough to figure it out. I needed a push and that happened this morning.

I’ve lived under a security blanket of scans, blood tests, my miracle concoction treatments and constant follow up since the beginning. I lie here shivering as my blanket is gone for now. My list of future appointments has never been so small. It’s SO WEIRD. Tomorrow would have been my surgery date. I could have made it this long. From my last treatment, until now. No problem. It’s logical for me to dismiss any possibility of something inside me going wildly wrong in a matter of weeks. But now. Covid, you suck ass. But now. I need to wait another month for surgery.

There is a feeling under my rib. Left side. It’s alive. A pain in my leg. They are weak like it used to be when I just started my recovery. It’s spread. I’m not hungry. Something is wrong. My tummy is so bloated. Ascites? Again? Old symptoms are returning. Are they? Is this all in my mind? I’m telling you. The mind fuckery is like nothing I’ve ever experienced. All it takes are pains and a snow day. It’s a perfect storm that offers time to reflect just how paranoid I am about my health.

My visitation to this therapy has not let me down. I think I know what I need to do. I need to remember that it could be much worse. I need to focus on the now and that I am OK in this moment. While the snow storm has me currently trapped inside, like the thoughts of cancer raging within, I need to break free! That can only mean one thing. I’m going for a walk. A Little House on the Prairie style walk. The episode where Miss Beadle let the kids leave school early because it was Christmas and they got caught in a blizzard. The Ingall girls made it home but they had a tough walk. Wind, snow, cold. I need that. A slap in the face, of cold pelting snow. Wake up! You are still here! Fuck this cancer! It does not own me!

Time to face the pain of the cold to warm my heart and soothe my fears.

HEALTH UPDATE: I experienced my first ct scan that was not stable back in June. Multiple liver lesions. The only information I know about these lesions for sure is that they are not neuroendocrine in nature. Tests and scans are ongoing. If you guessed that I am mentally unstable due to this cloud, then you are correct. Other than that, my health overall remains mostly the same. Labs are wonky here and there. I have days of relentless fatigue but I am still here!

Ramblings:

I insist that I am not a “writer” yet I have had this feeling over the past several months and I can only describe it as “writers block”. I haven’t wanted to write. Share. Face things. There has been a feeling inside that just said to me, I don’t want to. I feel nothing. Or, I don’t know how to describe this time in my life. So I haven’t. I tried writing a few time, blurting out frustrations and fears…but for my eyes only. It didn’t have the same affect that my writing has in the past. I was left feeling uncured. Still with jumbled feelings inside. Not knowing what the hell was going on. My go to “therapy” isn’t working anymore. Until today. Here I am. The keyboard is on fire and I have so much to let go.

The summer has been amazing and total hell, all at the same time. Willow had her first day of third grade yesterday. When we got home from dropping her off at school, I felt a fatigue like no other. It was time to exhale. It was time to start recovery from the summer months. I will miss Willow at home. I also have missed my time to regenerate. It’s like a life cycle of perfection. Get exhausted, then regenerate. Over and over. Isn’t that why we sleep at night? This exhale is like sleeping but on a much larger scale. Energy regeneration on an epic scale, if you will.

This summer was filled with many celebrations. I enjoyed planning a few parties for some majorly favorite family members. We celebrated my beautiful Mom’s 80th birthday in July. The party was amazing in so many way. I loved to see all the love for my mom and also the teamwork from my siblings. All having the same goals to make mom feel special. It was the best feeling. Of course there was the logistical side of things. The venue, decorations, cake! The cake! I will freely admit I went absolutely bonkers with planning. It’s what I do. I have to admit, it was beautiful.

Willow’s birthday party was in August. What a time we had! A little backstory. I was calling around to the local bouncy places that are very easy to hold a celebration. Just write the check. They do the rest. That doesn’t work for us. I was alarmed at the cost and for food that wasn’t allergy safe. It got me thinking. I’d rather hand out money to people that I know! So we did! Willow had 9 girls come by and we gave them an allowance and headed to Target! Afterwards, we celebrated with tacos and chocolate chip cookie cake. A fun time was had by all!

The parties were a big part of my summer spent planning and such. We filled in the cracks of time with adventures to the pool for swimming lessons, Camp Heussner in August, playing with friends, parks, movies and a trip to the local amusement park in Marshall, WI. Little Amerika. Wow, what a place. Tom hasn’t been the same since going on the Scrambler ride with Willow. We do our best. The fun stuff was really fun!

When times got tough, my dad had a saying that wasn’t meant to be funny but it was. He’d call a rough deal a “shit sandwich”. Do you know where I’m going with this? Yep. Summer is all about picnics and my picnics had their share of shit sandwich servings.

I’m still on active treatment. I’m still on the same miracle concoction. The trial of immunotherapy that has saved my life. This trial also includes ct scans every 9 weeks. They have been a breeze for over 3 years. Stable, stable, stable. I felt confident going in for my scan in June. Why wouldn’t I? I’ve come to almost joke about “scanxiety”. I’m a miracle! Nothing bad can happen to me now!

I clicked on the results. Did you know I can read results without even reading all the words? I’ve been doing this for so long that I know there should be just a sentence or maybe two. I’m not trying to brag, but I know what I’m looking for! S#! f&*@ D!%*! The results in June was not what I was looking for, nor what I was expecting. I see the haze of words. Much larger than a sentence or two. I hold my breath and read. “Multiple liver lesions identified”…”These are suspicious for metastatic disease”.

I immediately proceeded to get physically ill.

More tests were needed. MRI to get a better look. These lesions are tricky to see. I’ve named them. Tumor monster had a name, these guys need one too. Little fuckers. Of course when you need an MRI for little fuckers, there isn’t an appointment available the next day or the next week. There is waiting involved. Pain staking waiting. I was lucky and it got moved up earlier than originally scheduled. Results. Yep. You’ve got some little fuckers in your liver. Let’s get to it and complete a biopsy. Finally! Drugs! Good drugs. I’m excited about this. The biopsy failed and there would be no relaxing, feel good drugs that day. The little fuckers are hiding. They are not easy to see with an ultrasound. The biopsy is scrapped.

What do we know? We know that the tumor monster (acinar cell carcinoma) has appeared to be dead or sleeping for a while now. We tested for tumor monster dna in my blood. Negative. What could these little fuckers be? Oh wait! Remember back in February 2020 when Dr. Evans described the possibility of a “collision tumor”? Two different types of cancer in one tumor? Yes! I’m remembering that now. We did a specialty scan, called a “dototate” scan that can pick up a rare type of tumor called a “neuroendocrine” tumor. It’s all coming back to me. Back in 2020, this scan did indeed show a glow in the tumor monster indicating that I did have a suspicion for both acinar cell carcinoma AND neuroendocrine tumor activity. My PET scan this spring (2023) did not glow at all indicating that perhaps the little fuckers in my liver are the neuroendocrine tumors reaching out from my pancreas to say hi and I’d like to visit other organs now?! Could it be?

Well shit. I’m trying to remember how I could have forgotten to address the second type of tumor I had. I honestly think we’ve been all in a haze over my survival that it was literally forgotten. I’m afraid to ask so I don’t. It isn’t something that shows up on a regular pet scan. Since the tumor monster has shrunk, the suspected neuroendocrine tumors are even measurable and have been for quite some time. There are two and have not changed in size. They are just there. To think they could have spread to my liver now is the biggest face palm moment of my life. What the HELL!? Thankfully, I do not need to answer that question. My first dotatate scan since the original one in 2020 was completed and my liver did not glow. This means the little fuckers are not neuroendocrine. The two original areas that glowed in 2020 are STILL glowing. I am assuming this means I still have two neuroendocrine tumors that the immunotherapy has not killed. I am still waiting for an answer on wtf is going on with these two tumors on my pancreas.

The weeks are flying by. There are no answers. There is no plan. I’m left with my thoughts. Inside, I’m losing my shit if I sit still long enough to think about this situation. Cancer. The gift that never stops giving. Pure torture best describes not knowing what is happening to your body. Again. This is reminding me of when it took so long to get diagnosed in the first place. PTSD is real.

Look at the calendar! It’s time for my regularly scheduled 9 week ct scan (August 22nd). Let’s wait and see what things look like. I’m cringing inside. Utterly terrified. The results are not bad. The radiologist describes the previously noted little fuckers now as “occult” on this scan. Huh? Not there? Can’t see? Ghostly? Well, they are not worse (if at all) so let’s do a MRI in September and compare again. If they are bigger we will do a ct guided biopsy. If they are the same maybe we will just “watch”. Huh? Ok. One step at a time. My MRI is scheduled for October 5th.

But hey, what about those two suspected neuroendocrine tumors that are still glowing on my pancreas? What are we going to do about those? Why haven’t we talked about these blasts from the past until now? Did we really forget about them in the midst of my miraculous survival? Personally, I’d like to get them the F out of my body. I’m still waiting for answers. I’ve been busy. It makes it easier for me to push this out of my mind. I know I should be doing more to get answers but I’m so tired. As the weeks continue to fly by, I am scheduled again for treatment next week already. I’ll hope again for answers.

I’m no stranger to my inner chatter. It has ramped up again. Not since my original diagnosis and pending death (or so I thought) have I had such hard conversations with myself. It’s been hard not to tell myself, “I told you not to get excited about surviving!!”! I know things are so different now. I’m stronger. It has taken me so long to start to move on with my life. Gingerly accepting the beautiful fact that I’m still here and not all statistics are accurate. It’s been hard to accept this and being afraid of it all being taken away has been too much of a burden to even comprehend. I was getting to the point where I was starting to believe I could beat this for the long haul, but this summer has tested me greatly.

So for now, I will exhale. I will pray for strength. I will pray for answers. I will accept the fact that cancer is not a sprint. There will be times when I take a step back, whether mentally or physically, instead of forward. I’m still here and I’m going to KEEP GOING!

F Cancer!

Health Update: Are you ready for this update? WOW! I’m still cancer stable as of my last scans in May, 2023. There are lots of weirdo things popping up in my labs and I am following up on each of them with my trusted team. My broken esophagus is still in play. I eat small portions to keep trouble at bay but when it is bad, it’s kind of bad with lots of vomit but oh well. I roll with it. Not much can be done as it just doesn’t squeeze right to get food to my stomach. My glucose has suddenly decided to completely freak out and is pretty high for me. Although I’m not on diabetic medication, I’m pretty sure I could be headed in that direction. I’m sure my pancreas, my insulin creator, is tired. It’s been through so much and still has a 5.9 cm tumor monster clinging to it for dear life (but I have a lot of reasons to think it is dead). I’ve had a recent brain MRI which turned out great, no issues there! SO THANKFUL! Thankful for being stable. Overall, I’m doing great physically. I always feel guilty to complain given my history but aging is real, cancer is real and weird labs…are real! One day at a time! I’m still standing!!!

Ramblings…

This feels so weird!!! It’s been SO LONG! My very trusted method of therapy has been abandoned. Not because I do not need therapy. OMG, I need it almost more than ever. There is so much to share! I honestly don’t know where to begin.

Since my last post in February, I feel like I’ve been so busy. Like mostly everyone, life is just a whirlwind filled with parenting, family, playing, cooking, cleaning, doctor appointments and…working! Yes! Working! I sold my first house in 3 years. It was like I never stopped. It was exciting and amazing. I was nervous like the first day of school as a child. So far, so good. I’ve been dabbling with other showings and dealings since. There is something inside me that still says to take it slow. I’m terrified. Absolutely terrified to go back to my lifestyle before cancer. I cannot let that happen. My inner peace is priority, at all costs. It has become abundantly clear to me how much stress free living is a key component to my survival and well being. I will continue my ease back into my beloved career one day at a time, one deal at a time. Call 608-206-LIST with any questions! LOL, shameless plug. Ha ha.

Mental turmoil seems to be my largest challenge at the time. Although I’ve been stable for so long now, the inner cancer beast has never left. I do pretty well until it’s time to go to another treatment. Every three weeks. It’s nearly the same experience each time. I’m sensing the anxiety is not really coming from the required lab results. I’ve gone a few treatments without even looking! I’m not as quick to consult DR. Google for every blip in my results. The anxiety is not coming from the treatment itself. I sit in a chair with tubes coming out of my chest. Everyone is so very kind and it is painless. I read or sleep and it’s so easy. The anxiety is from the memories of how this all started.

I met a wonderful cancer friend named Lindsay and she finally put a word to what I would call this phase of life that I am so luck to be experiencing. “Survivorship”. Survivorship! It sounds so wonderful! It is so wonderful! But it’s hard. I think anytime someone experiences trauma, surviving can be hard, just as it can be beautiful. That’s where I’m at.

I try every single day to train my brain to do what I need to do to keep it together. To NOT fall into the doom and gloom trap and let my memories haunt me. I am constantly reminding myself. It’s over! I’m over that phase of being told I was going to die! I’m still here! KEEP GOING! It takes a lot of work. Since it is my priority, it takes away from other things that I’d like to be doing. Mental health is no joke. I feel such gratitude to know when I’m slipping and I know when I need to swivel. Even if it is for just a few moments, 15 minutes, an hour, a day, a week.

I love this blog. I’ve missed it. Once again, I’ve just answered my own questions by clearing my mind!!! I keep asking myself why do my projects take me so long? Why does a day go by so quickly and I feel as though I’ve accomplished nothing? Why have I started 12 projects and have 12 more I’d like to start but they remain unfinished? Priorities. That’s why.

Life has been otherwise incredible. Never easy, but incredible. Too busy to realize the grass is greener and the flowers are more vibrant as they were in the first months of my survival, but I remember well how blissful that time was and how blissful those things are. I’m just busier now, moving on with daily life instead of just literally staring into the sky, pondering what my future held and thinking about nature for hours on end and the beauty of it all. I may not focus on that as much anymore, but I will never forget the gift of appreciation that I have for all of it!

Amen!

HEALTH UPDATE: CT last week shows no change in the tumor monster. Still hanging around at about 6×5 cm. Not bad considering it started at 22x16x18! Much of the same these days although I’ve been experiencing more severe fatigue. My hemoglobin is low. The red flags are flying in my mind. I’m working on each and every issue I have to eliminate the biggest fears. I’ve got esophagus issues as well. I’m pretty much fucked on that one. It’s broken, so I throw up here and there (figuratively, not literally). I’ll just have to deal with that. PET scan is scheduled March 2nd! That’s the one that will glow if and where there is active cancer! Pretty exciting, huh?

Ramblings…

It’s time to reflect. I’m coming up on the 3 year anniversary of my first treatment of immunotherapy. My life saving, miracle concoction. Is this so unreal? If I sat too long to try and wrap my head around this fact, I think I would pass out! I think though, that it is healthy to never forget. I don’t want to dwell on things, but remembering that horrible time keeps me grounded. It reminds me of the uncertainty of life. It reminds me to let the little things go. It reminds me to KEEP GOING!

So much has happened in the past three years. The phases are undeniable to me now. I see no need to revisit my diagnosis and the horror it brought. The early days of chemotherapy and wondering how long I would have lived had my miracle not come true. It was a horrific time. The details are left in the past. However, it was the basis for the phases. It was the bottom of the barrel of my life, so far.

What came after that all time low is best described as complete shock. Imagine completing a scary task. You didn’t want to do the task. You didn’t have a choice. It was your fate. You complete the task and all you can do is pinch your arm. Am I here? Am I really still alive? Did that really happen? It’s hard to believe, but it’s true. You are indeed alive and starting to do well.

From there, everything turns into magic. It’s like there is no pain in the world, most certainly not my world. It’s like heaven on Earth. There is nothing that can happen that could be as bad as what I experienced for the past year. Nothing. I’m tip toeing through the tulips, savoring every breath and every ray of sunshine. This phase lasts for quite some time. I’m not even bothered by the fact I have no expectation that this bliss will last for months. For years! I still think I have just months to live! Yet I’m happy. The gnarly symptoms are under control now. It’s a new ballgame. Until I hit the slump.

My slump isn’t the worst of all slumps. Maybe I’m just confused. I discover that it is really hard to live day to day not know what this cancer will do. Wondering if the miracle concoction will continue to save me or perhaps, since it is an experimental drug, it will kill me? Over the course of the many months on this trial, I have signed a few new disclosures in regards to other participants not making it. There are no disclosures as to why. I don’t expect to know. Why should I be told? I can only speculate and I have to ask myself, was it because of ab122? It could be anything. Don’t go there. But of course I do, because I’m a self-diagnosed hypochondriac with one of the deadliest cancers with no explanations or answers to what my fate holds! This leads me to another disease with no reports, no facts, just me. The experiment. I call this disease, “mind fuckery” disease.

The mind can take you anywhere you want to go. Good places, bad places and everywhere in between! For a while after the glow of survival started to change, I found myself swirling into the darkness. I would like to think it wasn’t completely obvious if you looked at me. I would never want anyone to judge me for not living life to the fullest! After all, I survived! I should be on top of the world! Even though I was feeling the darkness, there was no denying (to myself, anyways) that I felt an obligation to be happy. I had been given the chance of a lifetime that 90% of people with my disease never get to experience. Life. I knew how I “should have” felt. I just didn’t.

There were new pressures that came along with survival. I think that fear of the cancer killing me has held me back for a long time. Held me back from thinking about a future! How could I possibly think of a future if I didn’t know I had one or not? I could compare this to relationships. You don’t just dive into a relationship. You take your time and give more of yourself as you feel more confident the relationship is going somewhere. I’m not giving myself and my feelings just to be rejected. Such is life. I’ve been so afraid to think about the future. How can I plan and almost function as though I have a future?

Time is proving to heal this dilemma. As time has gone on, I’ve grown more and more confident to move ahead with life. Projects. Work. It’s taken a lot of self coaching and patience but I’m feeling emotionally stronger. Do I still have bad days? Days of insecurity? Absolutely yes. But I keep going. I think of cancer less and less. It’s still on my radar as I am still on active treatment. It’s hard to put cancer in the rear view mirror completely when you still have a port in your chest. When you still have a full day of labs, doctor visit and an infusion every three weeks. When you have CT scans every 9 weeks. When you have genetic mutations that have you screening yourself like crazy for any other possible types of cancer because you are now deemed “high risk”. See how incredibly fast things can get dark? Commence self talk. Self coaching. The setbacks are smaller and take less of a bite out of me but I still get nibbled on once in a while.

All in all, I wouldn’t change this life for anything. I have taken what I’ve been given and I’ve tried to get through it all the best that I can. The most awful things are obvious. The most beautiful things are things I never would have imagined had I not gone through this cancer experience. My heart has grown. I have a new love and appreciation for human kind. My heart goes out to everyone touched by cancer. I truly want to hold the hands of anyone going through this garbage. I pray for the day research can cure everyone. There are so many other things I know can be over said. Live your best life! Appreciate the little things! Don’t take things for granted! It’s all true and then some.

To make this three year story short. How it started? It started in the ER when the tumor monster was discovered. How is it going? It’s going pretty damn good.

HEALTH UPDATE: Doing well. Meeting with a surgeon about my esophagus issues this week. Scanxiety sets in for my 9 week scan next week. Insomnia is common these days. Constantly emotional about, well, everything. I’m okay.

Ramblings…

Dear Tumor Monster,

First of all, fuck you. You came into my life uninvited, you total piece of shit. I think back to the day I found out what you were made of. Acinar Cell Carcinoma. A cancer beyond evil. Little is known about you other than you are a killer. You are rare and you are enormous at 22 cm at the longest measure. You do not belong in my body, yet you found the space…squishing, pushing and torturing what was naturally meant to be in my body. You caused pain, fevers and confusion. Once we found out who you were, we set out to kill you. Chemo stopped you. Immunotherapy has decimated you.

All the while that I’ve hated you, I’ve also respected you. You are not one to mess with. You seek to destroy. So do I. I’ve had the best of the best in my corner to stop you. In case you didn’t get the memo, science is not your friend. Doctors, nurses….they are not your friend either. You’ve made some pretty determined enemies. They have used my body as a bomb to blow you up. I could not be more proud to do this. See, it’s not just a matter of survival. It is also about the future. What can we learn by you? We now know that you can be vulnerable. I will do everything in my power to share these results so that people in the future can find their tumor vulnerabilities too. It will take time but it will be worth it.

I’m not usually the threatening kind, but I think you should know…we are on to you. We are coming after you. I’m just the start. Brilliant researchers are catching up to you. So tell all your asshole friends that it won’t be long until cancer will be stopped. For good.

Adios, fuck face!

HEALTH UPDATE: Some days I’m great. Some days I say out loud, “I feel like I am a cancer patient”. I have had increasing neuropathy lately. My feet are consistently tingly and I’m used to that. Some days, my legs are like jello. I’ve had several viruses, shared by my beautiful daughter and her peers at school. I pray it’s the reason for some more intense fatigue. My hemoglobin has been on the low side, just below normal, for a few months. Overall, nothing earth shattering. Unless, of course, you are completely insecure and a traumatized cancer patient that is easily triggered by the slightest tingle of health abnormality. But I digress. Today is spa day. We shall see what the labs reveal.

RAMBLINGS…..

Thanksgiving! It’s that time of year! Thank you cancer for teaching me to slow the fuck down. Thank you for showing me that things will get done when they get done. Yes. I’m still running full throttle at times. When I run out of gas though, I stop. I have worked hard to overlook the things that in the past, would drive me absolutely nuts. The house isn’t spotless the day before thanksgiving?! No?!!! Oh my gawd!! So what. The list of things to do goes on. Tom is being a super hero trying to close the gap and help out with the list. I tried to assure him when I left for treatment this morning that it can all wait. The laundry, the pumpkin cheesecake, the cleaning. Take care of our girl. That’s all that matters.

It’s a full house today at the cancer clinic. My heart sinks. This bothersome trend of so many people with cancer gives me pause. There are a few wise crackers in the crowd. My pager was sounding sicker than anyone in the room and I could tell we all thought the same thing. Smiles abounds. The man beside me in the lab, when asked his name, proudly declared he didn’t have one! Loud laughter corner to corner of this wide open lab room. Stories of thanksgiving plans and traditions circulated around the lab as we all were poked and tested for this and that. Then! An anonymous donor had gifts for patients! I do not know what the gift was but it was in a handsome bag with tissue. I kindly declined. My gift is really to know that someone not as lucky as me could have the gift. For the first time that I can remember, the entire scene was one of laughter with a craving for normalcy. It was mostly heartwarming with just a touch of sadness. Only because we all know there is nothing normal about why we are there. F cancer.

I’m finished meeting with my doctor. It went well. My labs results are acceptable for treatment #48!!! Forty Eight. Wow. It’s incredible and horrifying all at the same time. I recently saw someone on tik tok talking about cancer patient titles. Are you a survivor? A fighter? Warrior? Lifer?! I think all can apply but at the end of the day, I’m a lifer. I’m guessing I’ll have some kind of maintenance for the rest of my life. It’s just a guess. Honestly? I don’t mind at this point. If it’s not broke, don’t fix it. I’ve been trying to think of an alternative to ringing the bell for us lifers. I suppose the prize of life is more than any of us lifers could ever want.

The wait for my treatment today is long. There are so many people here waiting. I’m praying for everyone and hoping they have a relaxing and meaningful thanksgiving. I wonder if they will go through the same things I go through during the holidays. The combination of bliss and never wanting the holidays to end. Praying it just can’t be the last one. Some may say that’s pretty deep. They would be right. It’s deep and it’s real. It’s a good reason to make it count!

Happy thanksgiving everyone!

HEALTH UPDATE: Scan week! I really need to count how many I’ve had. I’ve been blessed with the word “stable” for months on end. Will tomorrow continue the trend? Followed by my 46th, or is it 47th? immunotherapy miracle concoction infusion on Wednesday. Who’s counting anyways? I’ve had pretty consistent challenges, which in perspective are all mild in nature. Mentally, it’s a different story.

Ramblings…

As with my stable condition, I feel like my draw to this blog, my outlet, is pretty consistent. I reach a plateau of emotions and I must just get it out. It’s been some time since I’ve written and I have so much to share. I’ve been a social experiment as well as medical. As time goes on, there is a pattern to see. There are answers to questions that months ago seemed impossible to answer. There are just observations as well.

I’ll start with the questions. Why does my heart sink when my birthday approaches? It’s a total mind fuck. Yay! I’m still here! But wait, will it be my last? I’d rather just let the day slip on by with no hurray. I’d rather take the birthday excitement and sprinkle it out evenly over all the other days of the year.

Why can’t I put my finger on my unsettling feeling to the common statement “We are all going to die someday”? It’s totally true! We are! How do I possibly explain why it feels different for me? I’ve had two dear friends die since my diagnosis. Without notice and forever, they are gone. My first thoughts, why not me? I finally figured it out. My friends had no warning. I have an alarm bell living rent free in my head every day. Cancer. For me, it’s a slow and lingering vision of my future. I could still get hit by a bus. It would be fast and unexpected…but cancer….it plays out over and over in my mind.

I have become quite attached to many content creators on social media in the cancer community. They are so brave as they post their struggles and also their wins! Like me, but in a different format, they let it all out. The good, the bad and the ugly. It’s sometimes so relatable. They are just people, looking to live another day. Sadly, some do not make it. A recent friend was fine a few months ago. The cancer returned and within weeks she’s gone. It’s reality. It’s what patients and families go through every single day. Fuck cancer! I really hate you! Like, REALLY! RIP Berkley.

This could possibly be the most dreaded and depressing post I’ve done. But hey, I keep it real, right? This brings me to my observation after nearly three years of riding this roller coaster. If I were to describe this experience it would look something like this. Sick and confused. Diagnosis and walking through the valley with tears and flowers while 100% accepting that I will be going home to my Lord soon. Unexpected recovery and pure bliss. Who cares about anything? I’m alive! Hey wait, how long is this going to last? That’s ok, I’ll just live day to day! Oh but now there are realities in life like paying bills and working. What do I do? Who am I anymore? I’m crippled with doubt and how to live like a normal person. I’ve been coasting for months. So busy but with what? Feeling pressure to make every day count! OMG! I won’t lie. I’ve even asked myself, what would have happened if I just had died when I was supposed to? That is hard to write but it’s the truth. Life is hard.

Well, there are some good signs I’m pulling out of this latest phase. It’s taken lots of time but I’m prioritizing things better and even feeling motivated to move forward with some new adventures and goal setting. GOALS! I’ve never set goals! But I’m a different person now than I once was. I’m incredibly grateful for this life, for friends past, present and future and for the beautiful world of science that has kept me alive. Cheers to you, cheers to me. Cheers to discovery of answers and piecing together this crazy thing we call life! In the end, it will all work out. This I know for sure.

HEALTH UPDATE: I’m itchy. It’s always hard to know where my symptoms are coming from. Treatment 4? Today. The beat goes on.

Ramblings…

I should be used to this by now. Used to this place. Used to the sick people and their brave companions that face this hell with their person. Used to constantly wondering how long this stable phase will last. For some reason I have that pit of doom in my throat. The one that is both physical and emotional. I can feel that lump! I want to jump on my bed, face down into my pillow, and cry it out. Bawl it out! Bend the knee and slam my foot into my comforter. Kick that foot on that comforter like I’m releasing every particle of dust trapped inside. I remember doing this as a child. It was my way to let out frustrations and emotions. I’m not able to do it now as I’m in the waiting room. I’m in line to see my beautiful oncologist. She is beautiful. I think I’ve only seen her unmasked once, that dreaded day when she told me of my dire prognosis. I’ve learned since then, that her beauty is more than skin deep. She has dedicated so much of herself to saving people like me. A warrior saving warriors.

I have been struggling in surviver purgatory. What to do. What happens next? Live life!! Don’t get cocky. It could be taken away. Quickly. In recent months I’ve found peace in decisions I’m making about my future. I’m excited to take work seriously again. Focus on reality. Move on from what has happened. Call me crazy but these visits set me back. Too soon to tell, but I think it might just be a notch or two. I will recover quickly, yet it’s real. Next time I’ll prepare myself. Install into my self warning system: you will be experiencing an expected emotional setback upon arrival and participation in your life saving tests, doctor visit and infusion. Accept this. Rejoice that this is an option for you. It’s okay to not be okay.

I will breath deeply and remind myself of the miraculous gift I’ve been given. Thank you, God.

HEALTH UPDATE: I’m mostly boring now with little change. My 20 something-ish CT scan yesterday showed no change from the scan before and no cancer spread. The tumor monster has dwindled from the size of a small football to a round-ish egg size. Truly and incredibly amazing. A medical miracle, if you will. My legs are so much stronger. I recently was able to sit on my garage step (low low low) to put on my shoes and I actually was able to get up!! Big win! I’ve had 4 negative tumor dna tests which means there doesn’t seem to be any of my tumor dna floating around in my blood. As I write this, I’m waiting to see my doctor before administration of my 43rd immunotherapy infusion. Next week I’m having an esophogram procedure. Before we decimated the tumor monster, it caused a hiatal hernia. I’ve been having digestive issues for 4 years now and as long as I’m still alive I decided to take this issue off the back burner and see what options there are to remedy my symptoms. Basically, imagine your bathroom sink with a huge hairy clog in the pipe and your toothpaste spit & water won’t go down. That’s how my esophagus feels. It doesn’t matter what kind of food or if it’s solid food or water. If it’s acting up, it won’t go down. It’s gross! Not to mention a recent endoscopy and biopsy showed some weird cells (not cancer). I’ve also got a skin issue on my face. All things that are tiny compared to cancer but as long as I’m still here, might as well check it out!!

Ramblings….

I had a cocktail! I actually had a COCKTAIL!!! I tried my first love, Miller Lite. Nope, nope, nope. Carbonation is just not doable with my messed up esophagus. While enjoying my amazing nephew Nolan perform in his band SALT, I ordered my first drink at a bar in years!! I went old school with a Malibu rum and pineapple juice. HA!!! It was delicious. It was really hot out. I think the alcohol evaporated because the only buzz I had was on life and being in complete awe of Nolan. What a star!!! So proud!!

I think of how cocktails can be like life. To say my life has been shaken is a bit of an understatement. I’ve been shaken to my core. I just keep shaking! I’m not sure how to eloquently describe it! Diagnosis. Death sentence. Survival. Uncertainty. Back to reality.

I was relatively quick to accept my grim prognosis. I credit my self diagnosis of hypochondria as a helpful tool to understand what was happening as I had already convinced myself that cancer is real and it could happen to me. When my recovery began to take shape I would call this the “kittens and rainbows” phase. It was at this time my life expectancy and life expectations were low. It was the most blissful I’ve been in years. Strike that. Change to EVER! The flowers smelled better. Chocolate was sweeter. The sky was bluer and the sun shined so much brighter. I will not commit to denial that these thoughts still exist. They do. But it’s different.

One word. Reality. I would have never guessed that survival could be so complicated. I find myself unsettled. When I thought I was going to die, I only allowed myself to live in the present. There were few worries of a future that I was no longer going to be a part of. I took care of as many things that I could control for the future as fast as I could as I assumed my sand was slipping through the hour glass. As I transition yet again, I’m facing the realities of life. Work. Finances. Health maintenance. Work. Weight. Covid. Drama. Work. Tripled life insurance premiums. Health insurance. Work. You know, stuff like that. Is the dying honeymoon over?

How twisted does this sound? Am I really complaining about being part of the 5% that survive pancreatic cancer in the first year? Maybe. Maybe I am. Life is hard. I read stories of people who have had near death experiences. They share all sorts of experiences. Bright lights. Beautiful calm feelings. Being outside of their own bodies and looking down not wanting to go back to their life. On a much smaller scale, I can’t help but to compare this to my experience. My heart has not stopped though. It’s only been cracked. I’m changed forever. Mostly for better. Some things are worse. I am grateful that fate has kept me here. I trust my God and I will keep on going!