Keep the Faith

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!

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.

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.

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!

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.

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.

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.

HEALTH UPDATE: Doing ok. My 9 week Ct scan will be on Tuesday, followed by labs and treatment on Wednesday. The outcome will be of discussion as we decide what to do next as my two year anniversary of immunotherapy quickly approaches in March.

Ramblings…

I’ve struggled in the past few weeks more than I’d like to admit. A fresh reminder that my life, in some ways, is no longer my life. It is now controlled by the tumor monster. I’m not one to normally cave to the monster. I’m the ruler of my castle! Not this unwanted and uninvited intruder! From what I’ve been told though, it will remain the rest of my days. There is no cure. Most days I’m flexible. I can live with this and compromise. This compromise is mandatory as in exchange, I am given life. A life that I love! This love of life grounds me, but the struggle is real. It’s a daily grind of moving past the things I cannot change.

My heart has been heavy. I’m missing my old life.

I want to erase the knowledge of cancer in my body. I want it to be like the good old days of paranoia, not fact. Oh to remember back to all the times I just worried. How easy it was to snap out of it, like waking from a dream. When awoke, it was not truth, just worries. Now I know. The cancer is there. It’s real.

I want my career back. I miss real estate. It was hard. It was challenging and exhausting. Dedication was a must. A good realtor cannot work only when convenient. It is a commitment. One that I can no longer promise. This breaks my heart. Truly. I’m very proud of my work ethic and all I have accomplished. It’s gone now. It’s brought on a feeling of failure for me. I think about it over and over again. How can I make it work? I end up in the same circle of endless frustration that I am not the same person anymore. Just face it! FACE IT! Why does acceptance have to be so hard? Processing, 1-2-3.

With this comes feelings of financial failures. I’ve been perfectly content living on love these past few years. This is somewhat concerning and on my ick list but while I’m prioritizing memories over money, I also struggle with feelings of being irresponsible. I guess it’s all about priorities now. We used to talk about a ranch in the country. Tom was finally on board with the style, I was finally on board with the country. Dreams are fun and this one happens to be very expensive and out of reach now. While cancer hasn’t killed me yet, it has killed some dreams of the future. But has it?

I’m living in cancer purgatory. I don’t know which way this is going and I’m thinking I’ll never know. One day at a time. It’s one of the most difficult things to deal with but mostly with one aspect of my life. My sweet girl. I never imagined I’d see her so big. She’s over 4 feet tall now! We were just talking about training bras! I tend to drop little “mom-daughter” bombs on her now and again. I know she’s young for these talks but I want her to hear it from me so I’ll plant the seeds now, just in case. This little girl grounds me. She continuously brings me back to earth. Over and over again. She is the answer to my questions. My heart is filled with love like no other and I can accept and do ANYTHING!

I love you Willow! Thank you, sweet girl!

HEALTH UPDATE: My apologies. I had many comments about my scan happening today. To clarify, we were only going to TALK about it today. That’s how excited I am! Lol. I’m at Carbone right now getting my life saving concoction. My labs are good. I will have my next CT scan on February 1st, like normal. Once we see how that looks we will likely schedule the pet scan and maybe even a biopsy or two! The anticipation of regrouping is exciting but also brings up chilling memories of the diagnostic process. Cancer really can mess with your mind.

HEALTH UPDATE: Doing well. Same issues of fatigue and weakness in the legs but I can deal with that. Next treatment is in a few days. I think it is #32?

Ramblings…

I’ve got writers block. I’ve wanted to blog for a long while now. I don’t know what to say. I mean seriously, what the hell? I’ve got spaghetti brain. It’s been difficult to try and sort through my life these days. My thoughts and feelings are all tangled up and swirling together like a big ole plate of pasta. I’ll just go with the random thoughts on my mind these days. Here we go.

It’s been more than two years now since my diagnosis. I am grateful and blessed beyond measure. I can’t tell you what it means to look into my daughters eyes and soul and just APPRECIATE that I am still here to see her grow. Her changes are plenty in these past two years. We laugh and we struggle. We cry and snuggle. It’s a dream for me, really. I’ve always wanted to be a mom and here I am, momming like a maniac! Here is the shitty thing about cancer. I’ll be having these tender moments or even moments of pain and then I remember. I’m not supposed to be here.

Live in the now! That’s what is suggested and oh do I ever live in the now. But on a daily basis the past and future chase me. I’m convinced I’ll never get away from them completely so I need to figure out a way to handle these haunting thoughts. Suddenly, as I write this, I’m remembering my own advice from posts past. Embrace! Embrace these fears in order to accept them and make them feel more like a buzzing fly than the sky is falling. This is a tall order. I mean thinking constantly that you don’t know when the cancer will rage again is something I don’t know if I can ever wave away. It’s not a fly. It’s my life. It’s the lives of my family. But for now I’m here and it is beautiful.

I have a huge scan coming up. March 13th will mark two years since my first dose of my miracle concoction of immunotherapy. My oncologist says that the trial lasts two years. We have talked a few words about what happens after that. I suspiciously wonder how many people have actually made it two years on a trial drug. She said once that she had a lung patient remain stable for two years. One patient. She didn’t mention lots of patients being stable for two years. She made a specific comment about ONE patient making it two years. Over thinking, commence! This confirms for me how lucky I am. My future will be a hot topic at my appointment on Wednesday. For months my appointments have become more of a social event. We go over symptoms and nearly flawless labs and we talk about our lives. I’m happy to be able to give my doctors a smooth visit. I can only imagine what their workload is like. This week will be different. We will talk about scheduling a pet scan. This scan will be of my entire body and I will glow in places where cells are multiplying quickly, indicating active cancer. We will all be on pins and needles to see how this two year trial ends. Is there live cancer? Is it all scar tissue? Did we kill the tumor monster? Is it sleeping? Did it spread it’s nasty claws anywhere else in my body? Honestly, I feel like grabbing some popcorn. I seriously am outside of my body watching a suspense movie. Personally, I think there is a 10% chance the cancer is completely gone. I think there is a 30% chance it has spread. It would have to be in my head or limbs because everywhere else has been scanned regularly. I think there is a 95% chance that nothing will surprise me. I’m thankful that I don’t really have scanxiety. I am just beyond curious! How can any news be scarier than being told you have months to live? I’m STILL WINNING NO MATTER WHAT! (Yes, I’m yelling, lol). Stay tuned for scan updates. Once we see the scan we will assess where things are at. Exciting, isn’t it?

Besides the chatter inside my head and the future scan, I’m finding myself back to living full throttle but in different ways. I’m forever grateful for being well enough to be functional. This cancer experience still inspires me every day. I have found my passion and my purpose. My podcast has brought me so much joy. I love meeting new people. I love getting the word out that nobody has to be alone through all of this. For once in my life I am not trying to beat last years numbers. I don’t need to be a top producer. I don’t need to make x amount of money. I just need to live and be human. I am living the emotional side of a human being’s life now. I am thriving off human interaction and trying to comfort while being comforted in the most amazing way. It feels wonderful until the chatter brings me back to the worry of it all crashing down. This is why the chatter is also telling me to keep going as long as I can. Just calm the negative chatter and keep the scale tipped in the direction of hope.