Keep the Faith

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.

Health Update: Scan was completed November 30th, 2021 and remains stable! Many times the report does not list specific dimensions of the tumor monster. This one did. Comparing it to last year in November, it has actually continued to shrink around a cm or so. Immunotherapy treatment #31 completed December 1, 2021.

Ramblings….

Today is a day of reflection. To even be here to reflect blows my mind. Some days I need to focus on being. Just for a moment. Being. Being here. Is it real? I don’t know what death looks like. Maybe it’s like life and you think you are on earth but you are not. With much certainty, I’ve determined that I’m still here. Lol.

It was two years ago today that my world turned upside down. I was sitting in a pedicure chair, desperate to calm myself from the grueling wait for my biopsy results. I knew it was nearly certain to be cancer but I did not expect the results. These were the last moments of my prior life. A good life. A life I cherished but now know I did not fully understand. While my feet soaked, my doctor called to notify me of my death sentence. My mind and body was devastated from the inside out. Heavy tears. It must be a misunderstanding. Not that kind. Not Pancreatic cancer. No. No. No. But it was.

And so it began. In the beginning, the news continued to worsen. The best chance for survival was surgery. Surgery was not an option back then and is still not today. I was given a grim prognosis that I’ve replayed in my mind more times that I should. Months, not years. Well TODAY!!! TODAY!!! Today surpasses years. Technically speaking. Yesterday was one year and 364 days from diagnosis. Today is two years! YEARS!!YEARS, meaning multiple, more than one. Glorious years. I’m still here. I’m so lucky.

To explain my emotions of these past two years it would be easiest to explain it as including every emotion known to humankind. Naming a few: fear, doubt, despair, sadness, concern. love, hope, encouragement, disbelief, determination, gratefulness and appreciation! I seriously would not be here without my support system. How do you thank so many people? Thank you. Thank you God.

I think of how much has changed in these two glorious years. Changes are no stranger to so many. Covid has changed so much of how we live! From home schooling to wearing masks, limited socializing and so much cooking at home!! Solo appointments. I’m lucky I had no issues going by myself for my appointments. My sickest times, when I needed emotional and physical support the most, was just months before covid hit the fan. It was in the waiting rooms, watching eyes, where I was inspired to start my podcast.

I cannot adequately express how it feels to reach out to people on my podcast. Just to be there. To listen if someone wants to talk. I love to have guests with a their own stories of experiences and expertise. My own blabbing has always been satisfying for me too. Lol. Depending on the day, I’m either goofing around or I’m talking straight from the heart. I care. I hate what cancer does to people. To families. It’s rough. For the tough times, there are gentle times on the podcast. There is zero pressure. No pressure on me. No pressure on my family and friends to listen. It’s there. That’s it.

I meet many of my guests on social media. It’s pretty amazing and I had no idea that there really is a cancer community out there! I’ve met and followed people around the world! We all poop! We all can get cancer! We all know people we love that can get cancer! We all have hearts! The outpouring of support given and taken on a daily basis online is incredible and inspiring. All of these things that I’ve learned about living with cancer has made my heart full.

I have lived quite a bit in the past two glorious years. From homeschooling and backyard camp outs to rappelling off the 14 story Hilton, it’s been a wild ride! I still have organizing to do and I’ve decided to change my funeral plans completely. I continue to mother and smother my sweet girl. She’s 7 now! She’s lost teeth and is talking and acting like a pre-teen! I’m so grateful to be here for her. I think of all I should have missed and it’s a really strange feeling. The time spent with family. Willow’s first day of real school. Little things. I also think of Walter. I think of Wild Connie. Both so dear to my heart and both taken without warning. I was supposed to die, not them. They both inspire me to live my best life.

My heart and mind overflow as I look back at my very different life that started two years ago to this date. A new life that has certainly had its dark times but has opened my heart wide open to a beautiful, bright and hopeful outlook full of love and appreciation. ❤️

HEALTH UPDATE: Same except broken toe is a little sore, red and swollen. There is a black spot near the nail. Must be melanoma. Kidding not kidding.

Ramblings…

I was not going to write today. Life has been too hectic. I wanted some time to be still. Time to be quiet. Peace. Spa day in almost every sense. Nope. The people have inspired me to write. So many people. “University of Wisconsin Comprehensive Cancer Center” labels the space I’m in. It is packed. It takes 9 minutes just to get to the check in desk. A man with his mask down below his nose stops right in front of me to read his papers he received from the desk. I’m instantly annoyed. Get your naked nose out of my space! I make a snarky move to distance myself. I’m waiting in line. Ooh. He’s so not happy. He barges in on the kind lady at the desk, slapping the paper down on the desk. “This isn’t my doctor”!!! Not minding one bit that the kind lady has already started to help another patient. He stands there anyways, waiting for immediate satisfaction to his concern, still with a naked nose. I’m wanting to set him straight. No. Silence! The issue is eventually solved. It’s my turn and all of a sudden I’m the only one at the desk.

I’m protective of the kind lady. She is my friend. She is one of many that takes care of me here. I don’t feel like a patient. It feels like being a senior in high school. I’ve been coming here for a long time. I know my way around. I actually just overheard an employee giving a patient the wrong directions to radiology! True story. She’s saying “first floor”! What? No it’s not. It’s 3rd floor. I’ve had enough ct scans to know where radiology is. They scan the directory by the elevator. Yep. Third floor. I wonder if the grumpy man with the naked nose is new here. I think it would be understandable to be grumpy as a newcomer. New diagnosis and not knowing how kind the people here will be. Yeah. I’m going with that.

I’m waiting to see my oncologist after a lovely time at the lab. My whiskey (takes the edge off), Rachel, handled my blood draw like a feather floating in the air. Smooth, peaceful and hopefully she found only the good blood. Next stop is the first floor to see my oncologist. Everyone seems to be behind schedule today. After checking in on my email I start to stalk mychart for my lab results. Who do I hear? Mr. naked nose!! I didn’t think it was relevant to mention in my original rant that he named my doctor as his “correct” doctor and that his appointment was NINE AM!! (He was kind of yelling). It’s 9:30 and he just got called back. I know my doctor can handle any anger, should issues arise. Back to results. Stable, stable, stable!

It’s my turn to see my oncologist. We laugh about my toe and that I caught a very mild sniffle from Willow. I mean seriously! I’m visiting her for my stage 3 inoperable pancreatic cancer and my main complaint is my TOE. Is this life of mine for real? How can I possibly be so incredibly lucky? Something has to be happening here that I haven’t yet figured out. I’m beginning to question if I’ve ever had cancer at all! Well, I have to answer that one. Yes, indeed I have cancer. How else could I have ever lost so much weight and have been brought to my knees in such an incredibly sick fashion? Not to mention the pretty pictures of my enormous tumor. The tumor monster. It’s just one of those days, like many, to be extra thankful. Don’t ask why. Just be thankful.

New family photos below! I’ll try to change the cover of this blog too but I always seem to mess it up. Photo credit goes to Amy Albrecht Photography out of Oregon, WI. Just a hop skip and a jump from Madison. These photos speak for themselves and I highly recommend Amy. THANK YOU Amy for helping us to preserve the memories of this amazing life.

Visit Amy at:

https://amyalbrechtphotography.com/