Thank you, God!

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.

Shaken, not stirred…with a twist of fate.

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!

Hurry Up

HEALTH UPDATE: I think I’m ok?! Plugging away. Still having immunotherapy transfusions every three weeks. Labs are good with a few things off but not enough to be of concern. Hint: I’m always concerned. Lol. Next scan is in August!

Ramblings…

Life is insane. I’m in this weird limbo. I decided it was just time to “move on” from cancer. Test results are good. Feeling pretty good. Why not just put it in the past. It can’t be good to think about cancer all the time. To think about the friends I’ve made that are dropping like flies to this dreaded disease. Keep going. Forget about it.

I took a break from the podcast. How can I move forward if I keep talking about cancer every week? Willow is home for summer. Spend every moment with her! That will take me back to my old life. And it has! Full throttle, baby! Going here, there, everywhere!!!

I’m creating ideas for my future. A future I thought was extinct. What should I be doing? Working my past job is out of the question. I can never again commit to that lifestyle. But I love real estate! A new real estate podcast, hosted by yours truly, is in the works. I’m very excited to share what I’ve learned over the years and have some fun doing it. Almost makes me feel like myself again, just thinking about it.

Almost. The truth of the matter, and what I’m figuring out? I will never, ever be the same again. Ever. My life is forever changed. For better. For worse. I can’t pretend I have not loved, learned and mourned during this chapter of my life. So while I’ve learned cancer isn’t something I can forget, it will be a big part of my exciting future. Key word, “future”. I still don’t know how long my future will last but I now know it can be yanked in an instant. I better hurry up.

take time

HEALTH UPDATE: It’s treatment day! My 40th treatment of immunotherapy! Still kicking ass. F you cancer! I had a colonoscopy and endoscopy a few weeks ago. My colon is free of any polyps or concerns, yay! My endoscopy lead to a new diagnosis of Barrett’s esophagus. I have yet to be consulted as to what this means exactly although the nurse told me it is not cancer. According to doctor googles, my best guess is that my hiatal hernia that still causes me to 🤮 has now caused cells from my intestines to now also be in my esophagus, where they don’t belong. It’s funny how a new diagnosis is like, meh…no big deal.

Ramblings…

I’m at my 3 week appointment! I’m waiting for my room so I can get my miracle concoction. Turns out my miracle concoction is creating miracles for others as well! There has been an article floating around by CBS about a small trial of people with rectal cancer. They have all had their tumors disappear! This very exciting drug is like mine but through a different company. My oncologist compared it to being like Coke and Pepsi! Isn’t that something? They all have many mutations, like me! I’m still the only one with the crazy, practically unheard of disease though. Yeah. I think I’m liking being the odd ball. Lol.

While I’m thrilled that these new drugs offer so much hope and are literally saving my life and the lives of others, I can’t help but feel my heart breaking. For all my cancer friends without mutations, the alarm bells and the headlines won’t likely help you. Too many cancer warriors are left behind. I see you. I feel your disappointment. Why was I chosen to be with the lucky crowd that gets to celebrate?

I’m sitting here at UW Carbone, waiting for care. My cancer friends and their incredible caretakers sit with me. It’s the same each time. So many sad eyes. Sick eyes. Concerned eyes. There are still no faces as covid just won’t die. Every time I’m here, I want to sit by each person and hold their hand with both of mine. I want to hug them with my eyes and silently communicate to them to hang on! You are not alone! But that would be weird.

Instead, I invite people come to me. I offer my voice on my Hello Cancer Friends podcast. It makes me feel good inside I invite everyone to reach out, if they like. I’ve met many incredible people and have made friends to last a lifetime. To say this is my passion would be correct.

A few days ago I participated in a rainy 5k walk to support UW Carbone Cancer Race for Research. Like the hills on the fresh cut grass trails, the walk was full of ups and downs for me. I did this one solo. Not without assuring my bff sister Melanie, over several days, that it would be OKAY if she did not come this time. She wanted to go. She always wants to be there with me. A part of me needed to go alone. I needed to process. I needed to be one with nature. I wanted to feel every ounce of appreciation for my miraculous second chance. This event did not disappoint! To be surrounded by so many people, all walking and running in the rain, to raise funds for this incredible cause was exhilarating. It’s so moving and I was proud to be a part of it.

While walking, I let my inner chatter go wild. No interruptions or talking myself out of sad or negative thoughts. My purpose was healing. I’ve realized that although I’m mostly joyful, there is deep seeded trauma that has come with my cancer experience. I cried tears of joy and sadness. I remembered where I started and how far I’ve come. I really lost it when the special song that I dedicated to my Dad randomly played. I know it was his sign to me that he was with me. It hurt but it felt good too. The whole experience was like a cleansing. It was so much more than a walk to me.

Another lesson learned. Take time. Take time to sort things out! Take time to feel your best. Emotionally and physically. Take time!

Keep Treading

HEALTH UPDATE: All good news. I had a biopsy of the tumor monster last week. I spoke with my oncologist about the results and there was NO CANCER in the tissue that was taken out. HOWEVER, there is no way to know if I am, as a whole, “cancer free”, unless the entire tumor is removed and tested. That would include the gunk in my arteries which cannot possibly be removed as it is too dangerous and remains inoperable. The rest of the tumor monster could be removed and tested. It’s a tough decision. It could turn out that it’s all dead cells in which case I’ve removed half my pancreas and my entire spleen for nothing. It could be that there are active cancer cells remaining in which case it would be very good to have them removed…but there could still be active cells in the arteries even if I had the bulk of it removed. As usual, not an easy choice but for now I’m going to hold steady, continue immunotherapy and pray I remain stable. To get to this point is beyond amazing. It is something I don’t think anyone had any realistic hope of happening. NO Cancer in a biopsy? NO tumor dna floating around in my blood? A 22 cm tumor monster decimated down to 6.5 cm? It’s quite a situation. Yay for me and YAY for science!

Ramblings…

I won’t lie. The past several weeks have been dramatic. I’m having a hard time processing a lot of different things in my life. First and foremost, that I still have a life! Let’s tackle this extraordinary cancer situation. Is it just me or is this just unbelievable? My emotions are all over the place. Seriously! Look at my past two blog post titles. “The beat goes on” and then, “When survival isn’t enough”! My ups and downs are extreme!

I am nearly speechless when it comes to my latest test results. I really am starting to believe I could be here for a while! I haven’t been given a new prognosis. I know there really isn’t an answer for me. I’ve accepted that my case is too rare for a scientific answer and there is no crystal ball. Living day to day makes it hard to plan a future. Mostly the emotional side of things. I’d love to go for the gold and assume I’ll be fine and just deal with bad health news if and when it comes but I’m pretty sure I’ve been traumatized by all of this. I have a pretty tough protection bubble that I’ve created in my mind. It’s holding me back a bit. It’s incredible that cancer can leave a body, but can it ever leave ones mind?

If this beautiful life of mine is to continue, I’d love for it not to revolve around everything cancer. I can see that now! I can comprehend the possibility of cancer not dictating my life but it’s been hard to fully embrace this thought.

Imagine ascending from a deep dive. You can see the sun shining brightly into the water. Fingertips extended towards the light. Feet gently paddling, your body stretched long. You surface, taking in a huge breath of refreshing air. There are smiles and relief as you wait for the boat to pick you up. Treading water. It’s doable. It’s not hard but after a while you get tired. You can see the boat that you need to take you to shore, you just can’t get on it. It is not too far away but too far to swim to right now. So you keep treading. You know sharks are in the water. Will one come for you? Keep treading. Keep treading! It’s beautiful being in the water. It feels so good to be moving and to be strong with the suns warmth on your face. Cramps happen. Fears happen. You know so many fish in this water that are being harmed and killed by the shark. The feeling of helplessness and heartbreak can be overwhelming. You keep treading. You can’t pray for all the fish if you don’t keep treading. Try to make it into the boat. Don’t give up.

Keep treading!

When survival isn’t enough

HEALTH UPDATE: By the Glory of God, I remain stable. I will have a biopsy on Wednesday to see what’s going on with the tumor monster. Please pray for no complications.

Ramblings…

Happy Easter! A blessed day of praising Jesus and how he died for us and has risen. My heart is full. In between the jelly beans and hidden eggs, the true meaning of Easter offers me inner peace, warmth and love.

I hate to bring this all up on the most glorious day, but it’s kind of the reason why. Why is surviving sometimes not enough? Of all days! It’s a beautiful day. My favorite. Springtime, Jesus has Risen and I’m blessed beyond measure. The truth of it all though, is that cancer doesn’t seem to stop. It doesn’t go away. It can be stable but will it ever be gone? Even if my miracle continues with a cure, is it enough? Why is it that I still have this sinking feeling?

I’m invested now. I know too much. I can’t, and do not want, to rewind the past few years. I’m coming to the realization that for me, survival isn’t enough. There is still sadness. The automatic happiness for just surviving is wearing thin. My eyes have been opened to the pure evil, that is cancer. Not just my own. Hardly my own! The people I’ve met, the stories I’ve read. It’s moved me. It’s made me feel helpless. My friends are dying, experiencing recurrence and being newly diagnosed. It’s unending. Ironically, with my latest round of good results of my own, I’m feeling as though I’m getting sucked into that black tornado in the floor. It’s a dark place where all control is lost. The force is strong but I’m stronger. I have come this far. I cannot let it suck me in.

Wall of protection, activate!! I need to regroup. I need to share what focus I have left with living. I need to redirect. Perhaps pretend, even for a little while, that cancer isn’t part of my life. I try not to deny pain, in general. Reality cannot hide. But maybe if I put it all on the back burner, just for a while, I can energize.

This post is dedicated to my friend Patrick who sadly passed yesterday. We never met in person but we’ve spent the past two years sharing and comparing our journeys with pancreatic cancer. May you Rest In Peace Patrick! you will not be forgotten. I will miss you!! F CANCER!

The Beat Goes On

HEALTH UPDATE: My miracle life continues. My Ct scan was stable. The new DNA tumor test is negative which means there appears to be no cancer dna from my tumor floating around in my blood, trying to spread. A year of negative results is more conclusive but still an astounding result. My PET scan from last month looked good too. I’ve decided not to rush into surgery. The main reason is that it is not possible to remove the involvement in my veins. I could go through removal of half my pancreas and all of my spleen only to find out there was no live cancer. There is a possibility I will do a needle biopsy. This will give us more info and is a lot less invasive.

Ramblings…

I’m waiting for accusations of this entire story being a complete lie. A scam. How could it possibly be true? It’s so unbelievable. If someone confronted me they would not be greeted with defiance. I’d shrug my shoulders! Right?! I know! How many people defy the staggering odds of survival of pancreatic cancer? So far, I have. The beat goes on.

This experience is surreal. It’s every range of emotion. I find myself with a new emotion of not understanding emotions! Lol! I’m so incredibly grateful, yet there remains uncertainty and heartbreak. I have been exposed. Exposed to the relentless cruelty of cancer. I’ve made so many new friends from diving into the local and social media cancer community. Beautiful people living with ugly circumstances. Each story has touched me deeply. My heart will forever go out to all that have been touched by cancer. The beat goes on!

It’s spa day today. I just finished meeting with my oncologist. Things are looking good. We have a plan. I can exhale. For the first time since this all began, I feel like I can start to move on. Just a little bit. Accepting the fact that I have entertained moving on blows my mind. Thinking of living, even for an undetermined amount of time, instead of dying is exhilarating! Proof in this life that anything can happen. I’ve already achieved the unthinkable but there is still so much yet to do. This story, thankfully, is not over yet. The beat goes on!

Nine Years

HEALTH UPDATE: I have met with a very kind surgeon who went over options. The only way to know for sure if there are active cancer cells in the tumor monster is to remove and study under a microscope. The problem is that there are areas that cannot be removed. The vascular areas are off limits as it could damage the blood flow. I obtained a second opinion from the amazing Dr. Evans in Milwaukee. He has concerns of complications after surgery. Ascites. The build up of fluids in the abdomen. I’ve had ascites. I had four liters of fluid drained from my belly when I was at my worst. Dr. Evans said the surgery could do more harm than good.

I have not yet made a final decision. I have treatment and a meeting with my oncologist tomorrow and a follow up with the surgeon next week. If this surgery isn’t certain to extend my life, I don’t see how I can take the risk of complications. Time will tell!

Ramblings…

Nine years ago. The weather was similar as it is today. Sunny and cool. The dreams of spring, soon to become a reality. I packed up my car and headed to Johnson Creek for an important visit. I stopped in Lake Mills on the way. I needed some healthy food. The place I was going had a table filled with cakes, cookies, bars and candy. I think we all needed something different. I went to the Sentry store and bought some fruit, but as this purchase was a last minute idea, I still needed a bowl to put it all in. There weren’t any options at Sentry so I traveled down the road to the dollar store. I found the display of plastic bowls. An array of colors to choose from. I’ll take the blue one. My Dad’s favorite color.

I’m getting myself and my new huge blue bowl into the car and my phone rings. I clumsily struggle to find the phone and get the bowl into the car at the same time. I look a mess with fruit, bags, bowls, purse and coffee littering my entire front seat. “Hello?”. It’s sister Melanie. “It’s time, come as soon as you can. The nurses are seeing signs.”. My heart sinks. I knew this moment was inevitable. We all knew. “I’m on my way. I have fruit.”.

I can’t get there fast enough. I’m anxious. Wait for me Dad. Please don’t go yet. I pull into the parking lot. The building is set back into a beautiful setting. I’ve arrived at Rainbow Hospice. It’s only been a week since we brought Dad here. I rode in the ambulance with him and have never cried as hard as I did during that ride. Trying to stay strong but knowing I couldn’t hold it in much longer. I let it out that night. Now it’s a week later. The tears are replaced with adrenalin.

I arrive and he’s alive. He’s still and sleeping. He looks comfortable and I’m relieved. My sister and I hug like we’ve never hugged before. This is hard. We need to make calls. Mom has someone bringing her. Aunts and Uncles have been notified. Siblings are coming. It’s heartwarming to see everyone. Your whole life, when you see your entire family, it’s for a special occasion…so the feelings are confusing when you are actually there for the death of the man that created you.

The day goes on. The “signs” of death continue. We pray. We pace. We visit in the large and welcoming social room. Unlimited Coffee. Brother Ben brings beer. Oh Ben, that looks really good. What the hell. It’s five o’clock somewhere and I’m really freaked out right now. I pop my first one and it is delicious. I have a few more and my near breakdown turns into an awkward display of coping. I follow through with the urge to tell my Dad every last secret I’ve kept from him before he’s gone forever. I tell him that time in high school when I didn’t come home all night? I was not having sex with a boy. I know by your interrogation when I finally got home that morning, that is what you thought. But I swear to you! It’s not true! It was important to me that he believed me. So I told him. I look back at this and I’m not sure what is more embarrassing. Catching a buzz at hospice or my priority of death bed confessions.

The hours go on. He is so stubborn! Dad’s priest finally arrives. It’s dark outside now. There is a large group at his bedside. I am at his left side, holding his hand. It’s been a long journey. Fuck cancer ALL TO HELL! Why did he have to go through this? Why did we ALL have to go through this? How did we get here? I can’t believe it is almost over. His fight is almost over. We pray. Father gives last rights and prays over Dad. As he finishes, dad stops breathing. He was waiting.

I’m not surprised that he waited one bit. He was dedicated to God. So when he told me two weeks before he died he was angry with God, I could not believe my ears. We had both changed completely at that moment. The girl too busy to focus on God and the man dedicated to God had switched roles. I understand how it can be easy to be angry about living in hell with cancer but I saw God’s role in a completely different way. I was reaching out to God to get me through my Dad’s illness. He was pushing God away. After he had expressed his anger to me, I asked him how he could turn his back on God now? When he needed him most? To see him pass on to eternity after waiting for final blessings was a huge relief to me that he wasn’t angry anymore. His love for his God was strong.

Nine years ago we lost him. Nine years ago he was embraced by the arms of our Lord. Such a bitter sweet feeling. I do miss him dearly and wonder what our conversations would be like if he were here today. I think he would be consoling me. I think he would be proud of me. I think he would be absolutely head over heals in love with Willow. The selfish side of me wishes so much that he was still here. My heart reminds me that he is in the kingdom of ever lasting peace. That’s comforting.

Just Wow

HEALTH UPDATE: It’s true. Surgery is now a possibility.

Without getting into too many details, there is an opportunity to get out the portion of the pancreas and my entire spleen where the tumor was in hopes that if any cells remaining are active, they would then be removed. They might already be dead and the surgery would be for nothing but at least we would know. There could also be active cancer still in the vessels leading to my liver but we cannot remove those…but we can test a vein leading to the vessels to see if we get a clean margin. This is not the complicated whipple surgery. This is a big surgery but not like that one. Risks are leaking, bleeding, infection. Recovery would be 5 days in the hospital, one month out. I called it one hell of a biopsy and the dr agreed. LOL. I am getting a second opinion, mostly for clarity. No decisions need to be made right this minute but the surgeon thought if I’m gonna do it, now is a good time. The PET scan is not conclusive, so this is really the only way to know for sure the status of live cancer cells.

Ramblings….

Wow! I didn’t quite expect this option. I’ve been told all along, no surgery. This isn’t the remove it all type of surgery we had hoped for upon diagnosis but to be talking about surgery at all blows my mind. The way I look at it, assuming the surgery goes ok…the worst case scenario is that there is still active cancer in the tumor and into the vessels. Best case, it is ALL DEAD. Do I really think I can live not knowing this answer? Can you imagine if it is all dead? What an incredible leap for science! This drug has already proven to be incredible but think of what it would mean if it decimated an entire 22 cm pancreatic tumor? I think I need to know. It’s like being on let’s make a deal and choosing the big deal but you can’t see what it is. That is just simply not going to work.

I’m making a list of questions as I let this sink in. I think I need a day at a real spa to really think this through.

Thank you

HEALTH UPDATE: I’ve said it before. I’m a miracle. The Pet scan has revealed little to no activity in the tumor monster. My case was presented to the tumor board and they think it would be advantageous to remove what they can. I will be meeting with a surgeon in the next week or so for details. !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Ramblings:

I’m sort of speechless right now. I’m sitting here at Carbone, waiting for my miracle concoction. I’m replaying the conversation with my oncologist. It was about an hour ago now. Still processing. Did she say what I think she said? Have we slayed the tumor monster? I know we’ve kicked it’s ass at a minimum. WHAT THE FUCK?!!!!! I’m sorry Mom. It slipped!!

Leading up to this appointment has been hard. I’ve done nothing for two days waiting for what seemed an eternity for an explanation of this scan. I feel absolutely crazy and now realize how fragile my mind actually has been the past few years. It all came back in a rush.

I’m excited to meet with the surgeon. I understand this is not a sprint. There will be much to consider. I have so many questions. I have the luxury of time to gather information, assess and decide. I have learned today that my trial is not a hard stop. I can continue on with my miracle concoction until decisions are made. I will lean heavily on those who know me best to make decisions. I’ve learned so much. I know now, how much I need support and help.

So today I will exhale. I will recover from the anguish of the unknown and celebrate my big win. I can’t stop thinking if all who have helped me along the way. Thank you. THANK YOU! Thank you. From the bottom of my heart. THANK YOU!