Keep the Faith

HEALTH UPDATE: Still in remission! Wonky labs. Iron transfusion today.

This place! I’m here at Carbone today. The worst place. The best place. It brings me so many emotions!! I start at the lab. I notice they no longer have pagers. Masks are still mandatory. I get sucked in to all the memories of this place. The waiting room. How many accumulative hours have I been in the waiting room for the lab? Going all the way back to 2007 when I waited with my Dad to get his blood drawn, the vibe has not changed. At all.

I watch the people. Their eyes. Groups of two. Which person is the patient? Why do I wonder? I do not know. Maybe I want to see if they look like me. I want to know if they feel like me. How is their cancer journey going? Are they scared? I wish I could give them hope.

Some people are easy to spot as the patient. They might look like they are in pain. Maybe they are in a wheelchair, have oxygen or are bald. It’s not fair to make assumptions, but this is what is going through my head as I sit in this room.

Who is the caregiver? The support. The love. The hardest job ever. One man stuck out. Undeniable eyes of concern along with his long hand embracing his persons entire forearm as they waited for her name to be called. They both look so tired. Not just sleepy. Cancer tired. Tired of the fear, the worry. Please hang in there. I’m rooting for you!

I’ve been away from this place for some time now. My life has continued to sail. It’s incredible to me what an awakening coming back can bring. While I may not be fighting cancer now, I will forever fight for hope, love and comfort to be felt for all facing this harsh reality of cancer.

I was 38 years old when I was diagnosed with PCOS. Polycystic ovarian syndrome. This condition explained a bunch of symptoms I had experienced for many years, such as acne, weight gain, painful periods. I thought all of these things were so not cool but I had no idea that the worst was yet to come. My ovaries sucked. They did not easily produce viable eggs. Eggs needed to create a human being.

So it began. Tests and pokes. More tests. We would need medical assistance to start our family. We couldn’t start fast enough. So into the world of infertility we went. We started where they recommended we start. Tom was not the problem. I recall the nurses stating that he appeared to be “showing off”. The problem was me. Me and my shitty ovaries.

We started with medication to give my ovaries a boost. It was so exciting the first few cycles. Hyper focus on each day of my cycle, taking oral medication and having vaginal ultra sounds to track the activity on my ovaries. While my ovaries were able to produce a few viable eggs, there were never more than a few to three on one or both ovaries. When the time came, there was a sperm transfer made. Not in the romantic setting one would hope to experience when creating a family with your spouse, but in my fertility doctor’s office. With my husband in the chair across the room, while I grasped the crisp sheet on the clinic table. Granted, the place was NICE. I’ve been to beautiful spas that remind me of my fertility doctor’s office. Peaceful, dim lighting, tender care.

The setting was easy to overlook. We’d do anything to create our child.

After several failed attempts we took another step to improve our dismal odds of conceiving. We knew I had a benign fibroid tumor. It was time to get it out. I consulted with a doctor for the removal. She set the date. Moments prior to the procedure, when I confirmed that the fibroid would be removed, she looked at me like I was insane with a sharp “we can’t take that out today! You will likely need a hysterectomy to get that removed!”. Wait, what? I was in shock. How did she misinterpret our first meeting when I told her, “I need this fibroid removed, can you help me?”? How? I went forward with the hysteroscopy that day and there were a few polyps that were removed but the fibroid remained. Everything else looked good.

Future fertility treatments were on hold until I was fully healed from the procedure. I won’t lie. It was nice to take a break. At the same time, we could not wait to keep going. The months are flying by and my age is also not on our side. I needed one more period and we could start the next cycle of treatments once the cycle clock started to tick. It was the period that never came.

I was pregnant. Naturally!

I can’t explain the feeling. Mostly disbelief! I’ve always heard that it will happen when you stop trying! It was true! Jubilation and thanks to God above! I called the doctor right away. By the time I had my appointment, just a few days later, I was experiencing light bleeding. The nurse assured me that it could be a number of things and arranged for an ultra sound the next day. They estimated, by my blood test, that I was 8 weeks pregnant. They sent me home with books and folders about being a mom. All of our prayers were answered but I could not stop the sinking feeling I had.

The next day, the bleeding did not stop. It got worse and worse. Huge clots. Gushing blood everywhere. I knew this was not normal. By the time I made it to my appointment for the ultrasound, I could barely walk due to blood loss and cramping. It was gruesome, emotional and left me literally speechless. The shock and horror of this situation was indescribable. Although the pregnancy was confirmed by blood testing, the ultrasound confirmed that there was no baby to be found. I gasped for air to cry. I was in shock.

Days later, the doctor called to tell me that the benign fibroid tumor that I had asked her to remove that she didn’t, had gone from the size of a grape to a grapefruit and that I should probably get in touch with a surgeon to remove it. So, I did just that. The surgeon ended up closing me back up with the fibroid intact because it was connected to a very tricky spot. It was likely the reason our baby did not survive. With the skillful hands of one of our fertility doctors, a second attempt was made to remove this fibroid from hell. It was a success. All we had to do now is wait for me to heal up and we are back to fertility treatments.

I started with pills to boost my ovaries. Next level was injections. At $5000 a month out of pocket, we didn’t question it. Not that we had a money tree, but because we would do anything to keep going. Injections, vaginal ultrasounds, transfers. I can’t remember how many cycles of the injections we did. Failure after failure. By this point, we are sick and fucking tired. Emotionally and financially devasted. Every cycle. Praying it’s the one that works. Please God. No period. I can’t take it. I can’t take it! It crushed my soul. We were beyond defeated. We are running out of time! Please God, I pray! PLEASE! I couldn’t do it anymore. But we had one more option to consider. IVF with donor eggs. Fuck it. Let’s do it.

We picked a donor after carefully reviewing profiles. We chose our donor and she created the eggs that I could not. We ended up with enough embryos (with Tom’s sperm) to try two transfers of the embryos to me. Both failed.

As with most of my life experiences, I learned a lot. While at a doctor visit, my history was on the screen. There it was. “Abortion”. What in the absolute fuck is that? I nearly jumped out of my chair. I DIDN’T HAVE AN ABORTION! Tom! They called it an abortion! Why would they call it an abortion??!! I would never abort our baby! I obviously did not know that “abortion” was used as a medical term for loss of pregnancy. It took me a while to accept that yes, I had an abortion. But it wasn’t at all what my perception of an abortion was.

My pregnancy was naturally extracted from my body. There was no further needed procedure to complete the abortion. This is not the case for so many women! My heart goes out to every woman and family that goes through this beyond awful experience.

As I revisit these memories, my heart is still as heavy as it was back then. It was the most heartbreaking time of my life and far worse than being told I had months to live.

My abortion was a medical emergency that if I had any control over, would never have happened. I cannot imagine being in my situation and not having medical choices for my own body. When I think of my daughter’s future, I panic. To deny choice is cruel and inhumane. I will never understand this.

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!