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!

Dr. Google

HEALTH UPDATE: I tried. I really tried! I could not interpret my PET scan results (lol). Dr.Google let me down. I requested a quick multiple choice answer from my oncologist to keep my mind occupied until we meet on Wednesday, with the choices being good, bad or same. The reply? Nothing new/worrisome. Ok! So that’s a start. Hopefully more info to come next week.

My View

HEALTH UPDATE: Still Stable (Crazy) after allllll these years…. LOL. Yes, I remain stable as of my last CT scan about a week and a half ago. I have recovered this week from the side affects of my Covid booster shot. Dang! Those symptoms I get remind me so much of my sickest of days. I’m thrilled to look behind and leave that in the dust. The mother of all scans has been scheduled. The scan I’ve been waiting for. The PET scan. It will take place on February 18th at 7:30 a.m.

Ramblings…

Oh, my view is so amazing. My kitchen window overlooks my back yard and into the forest that edges up to natures finest wetland. Cattails, tall green plants in the summer, brown in the winter. Animals and birds abounds. We’ve seen many deer families over the years. One doe succumbed to injuries or illness on the side of our yard once. It’s carcass revealed after the spring thaw. It was gruesome. As is life on occasion. We’ve seen fox, cats, owls, birds, hawks, bunnies and so many squirrels. The birds are amazing. It’s a beautiful view. The sights, sounds and smells are so familiar. So comforting. I’ve had the same view from my kitchen window for 23 years. It’s our first home and most likely my last. I don’t think I’d want it any other way.

I was doing my daily stuff at my kitchen sink this morning. You know, filling the Keurig. Filling the humidifier. Cleaning up dishes. Making Willow breakfast. I get to see the sunrise every morning from this view of mine. It’s stunning through the trees, especially this time of year when the sun has no leaves to hide behind. It’s mostly clear today and the colors are dull yet stunning. The contrast of the orange glow, the blue sky and white snow is something to behold. I am blessed. All I need to do is look at my view for this constant reminder.

The view on the inside of the house isn’t bad either. My small but mighty family is tight. We are the three amigos. We do everything together and always have. There isn’t a day that goes by that we are not together. It’s a miracle that we don’t strangle each other! But we don’t. We need each other. Deeply. It’s the gas that I need to keep driving.

While I cherish these days, there is always the twinge of fear that I will be missing at some point. It was believed and certain upon my diagnosis. Now it is just a floating thought. Will I? Won’t I? Statistics say I have a less than 10% chance of a 5 year survival. I’m different though. My story is nothing short of miraculous. I take this to mean that anything can happen. Anything! I could make it for years and years or I could die suddenly of a clot. I gasp at the thought but I need to be realistic. So, while on occasion I can let these thoughts take over, I remember how grateful I am. I am here with my view on borrowed time that many with my same disease are not rewarded. I pray for my fellow warriors. May peace be with you, always.

#34

HEALTH UPDATE: God is so good. Ct scan remains stable, labs are good. I am writing from the infusion chair today at Carbone. Pet scan is ordered and will be scheduled in the next several weeks. There is also a new test on the horizon for me! I’m just learning of it today so I’m not sure of the details but generally, the test will compare the dna from my original biopsy to my blood to determine if there is active cancer in my body! It can be used as a tool down the road to keep an eye out for the cancer getting out of control, instead of waiting months for scans. I’m super excited and looking forward to learning more! It sounds incredible!! I love science!!

Ramblings….

This old dog keeps learning new tricks. I have been having a hard time. This shit is hard!! Duh! What did I expect? I know my feelings are valid. It’s not like they are not warranted. However! It’s about how I handle these feelings. How do I process? When will I trust myself enough to know I will pull through? I think the hard times are a reminder of how good things really are.

As I sit here in the infusion chair, waiting for my miracle concoction, I am reminded how much my outlook has changed. My heart is wanting to hug everyone around me, especially the rookie next door. We are separated by a fabric curtain. I can hear everything. First, someone is describing to the patient what will be infused into his body. Side affects are discussed and which pills to take. Don’t wait to feel nauseous, just take a pill. Awkward jokes are made with a nervous voice. The timer is set, the toxic chemo flows and then there is silence. I really want to pull the curtain and pop my head in. You ok?

Earlier in my visit, I had a few notable occurrences. I was late. I had my whiskey (she takes the edge off), Rachel, draw all my good blood. It’s always so nice to see her. Everyone is amazing. After labs, I proceed to the waiting room for my appointment with my oncologist. My eyes gravitate to a young couple. I can feel the pain on their masked faces. What are they doing here? They are so young? Oh yeah. Cancer does not discriminate. I want to squeeze their hands and tell them it will be ok.

My appointment goes well. We talk more about my future. I’ll be having the pet scan soon and also a new type of blood test. It might just give us an idea of how active my cancer is. It will take about a month to see results. They will be extracting dna from my biopsy! The science is incredible. God bless researchers and doctors.

I’m feeling grateful. I’m feeling compassion for those around me. It amazes me how this experience moves me. I’m so lucky.