Keep the Faith

HEALTH UPDATE: SAME! Sore as hell but better than being dead. I’m waiting for my suite at UW Carbone Cancer clinic for my treatment today. Labs are looking fabulous! Yessssssssss!!!!!

Ramblings……

I’m so relieved. Everything is looking good here at my immunotherapy appointment. After the last one, I wasn’t going to get all upset and worried without knowing the actual outcome. I did really good! That is, until I sat in that tiny room waiting for my doctor to share my results with me. My self diagnosed hypochondria got the best of me again. It crossed my mind to pull a “Karen” and start bustin heads to get her in quicker. The foot was wagging. Knee bouncing. Mask fidgeting. Click, click, click….footsteps. I know those shoes. Flats. Clickity click flats. My oncologist is beautiful. She dresses very nicely and almost always wears flats. Now I know her shoe sound as she comes to see me. Knock knock….

How are you? No bike accidents? Haaaaa haaaaa, I hang my head in embarrassment. Nope! I tell her I feel like I was just there to see her five minutes ago. She agrees. As she logs in to my information she says the most beautiful words. Your labs look great! Let’s call in the drugs.

I’m settling in nicely to this routine. I’ve heard people talk about “the good years” or the “best times” of their lives. What was your best time? High school? Probably not. For me, I won’t lie. I had a great time in high school. One word, FUN. Okay, two words. PARTY! Lol. Childhood was good for the most part. Yeah…I wasn’t one that likes to be told what to do but I’m glad my parents did and I have many cool memories that mean a lot to me. 20’s? 30’s? Very fun time. Wayyyy too much drinking. Way too much working. I don’t regret either. My 40’s seemed to be when the real drama started. We lost Tom’s dad Lou, Tom’s brother Michael and my dad Carl. We lost our fur baby, john “Cougar” melloncat. Our miscarriage and fertility journey was also beyond heartbreaking . The market crashed, so did my business…no worries, it was temporary. We survived and thrived starting our family with the most amazing little human.

This little human. My girl. She has helped me turn the worst time to the best time! My 50’s!! Cancer does NOT automatically mean it puts your particular century in the loser category. Seriously. I can honestly say my life, right now, is the best time! Despite the cancer. Despite the pandemic and all the worldly problems. Ok, there is a catch. I’ll be honest. If I think about terminal cancer, it becomes “not” the best time…especially when I remember that is what I have.

Lately I’ve been thinking though….so WHAT if my cancer cannot be cured? I mean yeah, it isn’t great but I’m feeling pretty good. I feel better than I have in a long time. It really gives some credibility to doctors and modern medicine. How many pancreatic cancer patients have you heard of that are on a diet? I am! That’s pretty cool although I have ceased ordering oreos for a while. Thoughts and prayers, please? Lol. Another major mind shift in recent weeks for me. Surgery. Who needs it? Upon diagnosis it was my only option. Get rid of it. Save yourself!!! I was paralyzed with fear the day they told me I could not have surgery. It’s amazing how things can change. I’m so grateful. I actually feel that living with a smaller tumor monster would be best for me as long as my labs are good and I’m feeling good. Surgery would be very hard. They will remove a lot of stuff. A lot of stuff!!! Recovery is never guaranteed. I will, of course, rely on what my doctor says is best but at this time, I’d be perfectly fine to carry on just like this. Nothing good is easy though. Time will tell.

For now, I’m in the chair. Waiting for my miracle concoction to arrive so my wonderful nurse can hook it up to my jugular. Life is good!

HEALTH UPDATE: I’m so sore. My joint and muscle aches are bad. I’ll pull through! I’m still here! I was notified yesterday that I will not have a scan in a few weeks as previously reported. Now that I’ve been on the study for a while I will have a scan every 9 weeks instead of every six weeks. Okay by me! I guess. Actually, it’s always a mystery. Wondering what is going on inside of me. It’s haunting to know. It’s haunting not to know. I guess i will just need to keep my mind occupied on other things. Now that won’t be difficult!

Ramblings….

Here we go….my mind is full and it’s going to burst. So much to say. Cancer related. Not cancer related….although cancer seems to have crept into not only my body but also into my thoughts and my soul. It has changed how I look at the world. This crazy world!

Life before covid was so different. I was just minding my own business. Working hard, trying to be the best wife and mom, getting diagnosed with terminal cancer. You know. Life. Willow came home from school with a few cold viruses in January and February. I was in the thick of it. Chemo. Tired. Sick, sick, sick. We could not handle colds on top of it. We always have kept her home from school with even the slightest fever. Nothing is more important than comforting a child when sick and also not spreading it to her friends and teachers! I caught her stuff and we made it through. She ended up sick for a few weeks. We were trying to decide what to do and bam! Covid 19. Schools were closed and Willow was never to return. We miss our friends from school dearly and sincerely. They will always be family to us.

Fast forward to current time. Kindergarten! Choices. Decisions. Big ones. I went into the process with an open mind. I wanted to hear what our school was going to do to protect my sweet girl. I should have known it would ultimately never ever be close to being enough. It is at no fault of the school. I am so very impressed with the steps and the thoughtful process they are enduring to do the best that they can for our children and teachers. It’s me, not them. I don’t take chances. I just don’t. It is the same with Willow’s food allergies. Why take a chance if there is a way we don’t have to? I should actually say, why not minimize the risk if we can? She’s staying home!

We have been working very hard (okay, Tom has been working harder) on creating a school space in our home. I’m really getting into it. We will be doing virtual school starting September 1st. We have Lisa and Walter next door ready to help us with a fun video recording of her first day. We will load her up in the car and drive her to school and everything. Like we’ve been doing since the beginning of covid, we will try and have the most fun as possible while staying at our home. We want her memories to be good! Can you imagine how she will look back on her childhood? She doesn’t complain often. She misses friends and sometimes gets bored but mostly we just have fun. She doesn’t let on that she knows how screwed up everything is. I often tell her that these are unusual times. She shrugs her shoulders and asks for another snack. I realize that she reacts the way Tom and I do. It’s important to act like an adult but we all break at times. I explain that to her. We are going through a lot but it doesn’t mean we can’t have some fun! Hence the water balloon fight at dinner time last night. Not an ideal time of the day but we make it happen for our sanity. That kid is a fighter. Her goal is to make us wet. No dry spots anywhere. Tom plays along and loves to take the brunt of the torture. Freezing cold, right from the hose water balloons. He loves it. I love him….and my girl.

What will life be like for her when she’s older? When I’m gone? It terrifies me. I hope I’m here for a long time. I just don’t know. She’s strong. I need to keep building this foundation for her. I’m writing her a book. I concluded in March when my situation was quite dire. It is hello. It is goodbye. It is a book of advice and what her life means to me. I have so much to tell her. A lifetime of things! Things that she isn’t ready for right now. It struck me a few months ago that this book is not yet complete. There is so much more to tell. Even in just the past several months! I want her to know what this time in our lives has meant. I don’t know if I trust the story to be told by other sources not within our circle. Who knows how they will decide to tell the story of our history in this time period? This is a nation divided! So I will continue to document our history in real time. I pray this book becomes an endless amount of pages. I also forgot to throw in some stuff about periods and boobs. You know, stuff like that. In case I’m not here. I’ve got your back, Tom!

I love Tom. He’s a really good guy. He takes care of me. He also drives me nuts, just like I drive him nuts. Not all days. Not most days. Once in a while, I guess. None of this has been easy for him but we somehow manage to get through it all. We’ve been connected at the hip since meeting almost 26 years ago. About 15, maybe 20 years ago we started to work together. I don’t know many couples that can do this or would want to do this. It’s pretty crazy. i can’t imagine it any other way. I wish I could make this cancer stuff easier for him. It seems like an eternity ago but after being diagnosed back in December I was crazed with the thought of him having to take care of Willow, work, grieve and plan a funeral on top of all of that! So guess what i did? ***Trigger alert*** Funeral planning, death discussion ahead….

I planned my own funeral. It gave me a sense of accomplishment. It’s weird but I enjoyed it a little. It wasn’t sad for me. I cried once when referring to Willow. Most of it was deep and satisfying. Did you know you can have a “green” burial? There is a place out near Mount Horeb. A different kind of cemetery. You can be buried without a casket. Without anything! Become one with the earth! That idea was really appealing to me! Whaaat? Yeah, I thought it sounded trendy and different. I liked the idea of a mummy like cloth covering my body. So yeah, I eventually changed my mind. LOL!

I found it hilariously ironic that all of my planning will likely be for nothing due to covid. Ha! Well hopefully I will be around long enough for my wishes to be fully carried out after covid is long gone. I planned a beautiful visitation and mass at my church. I have picked everything. Readings, music, flowers, casket and even bought a dress that doesn’t fit anymore! Gah! Hopefully I’ll slim down again because the dress is beautiful. My forever dress! Ha ha. By the way, how many people do you know with stage 3 pancreatic cancer that is on a diet? I am! A true testament of how well I’m doing. Tumor monster has apparently stopped eating my calories. I won’t lie. I don’t like that part of this but if it mean it’s dying than so be it! I’ll take the calories! Ok…so back to the funeral.

Hopefully everyone will be able to attend. I would like a lovely lunch with all the fixings. Ham sandwiches, baked beans and pickles. Traditional, right? I would prefer an upbeat situation. A celebration. Even the worst case scenario deserves celebration. I’m winning! I have already overcome so many obstacles! Cellllebrate good time, C’mon!!! I’m not sure why I get almost giddy when discussing my funeral. Anyways. i also have purchased a plot at a cemetery in Madison. I didn’t even tell Tom. I just did it. He knows now but it took me a while to tell him. It was a hot spot that someone had just returned to the the city cemetery. If there is one thing I know a lot about it is real estate. You gotta be quick and jump on the hot properties! I bought it quickly and made a dear friend in the process. It seems I ramble just about everywhere I go. Even at the cemetery. I met a wonderful lady that helped me with this purchase. She is so kind to me and she just sent both Willow and myself cards just last week! So thoughtful and loving. Thank you friend, you spoil us with your kindness!

I have a few loose ends to finish up but I’m almost free of my earthly obligations that I’ve often meant to complete should I have to leave. I’m going to keep writing that book to Willow. As long as I can. Forever would be nice. I want to be here for her milestones. I’m almost there for kindergarten. I should make it to that one, no problem. I was just able to share the loss of her first tooth! That was WAY more exciting than I ever thought it could be. She was so brave! Mom! My tooth! It fell out! Awww, baby!!!!! So proud of her. I have to keep this train going. I just have to. Life is so good. God is better. Thank you for this gift of life even through the worst time in our recent history. Thank you for teaching me what is important and giving me the gift of appreciation beyond words. I pray I can continue to come up with the words to teach my daughter about life and mankind about my life and how a death sentence can actually mean a better life! I’ve always been a quality, not quantity type of person. Who knows, maybe I’ll have both!

I love you all!

HEALTH UPDATE: Doing well! As I write this, my good friends at UWCarbone Cancer Clinic have me all set up for treatment and the miracle concoction is dripping. Fire in the hole! It will take an hour and then another half hour for observation. My labs are good. We are holding steady. Steady is absolutely wonderful news for me. I am blessed.

Ramblings…..

God is so good! I am feeling an incredible and an explosive feeling of gratitude today. I’ve been nervous. I’ve been feeling different leading up to this appointment. I’ve been extra tired. I discovered a leg bump. Not just any kind of bump. One of those bumps that not one doctor could provide an explanation about in the past. Sister Beth found the explanation. The bumps are caused by high lipase levels. These levels also have coincided with tumor monster activity. I was once at over 9,500 when the normal level is around 8-60. Immunotherapy quickly brought my lipase level down to normal. When I felt the bump pain again, I panicked. Quickly…add up the symptoms. Tired, leg bump=high lipase, tumor monster with only a slight decrease in size last scan. Here we go again. The bitch is back. It’s growing. My miracle concoction, ab122, is no longer working. My rare cancer is outsmarting my immune system on crack.

My inner voice of panic is familiar. Distant but familiar. I’ve been here before so many times. The self diagnosing. Insecurity. Why do I deserve to win? My family snaps me out of it. Willow is an avid camper now. She’s loving the tent in the back yard. I’ve slept in the tent with her for two nights now. I tried to scare her out of it with stories of bugs and animals coming out in the night. Nope. Not scared. She’s tough. She kicked my butt actually. My bruised ribs from my latest bike accident didn’t fare well with the leaky air mattress on night #1. I convinced her to go back in the house around two am at her first noticeable squirm. It didn’t take long for her to wake enough to realize she wasn’t in the tent any longer. Screams. Begging. Pleading. I need to sleeeep in myyyyy teeeeeeennnnttt!!!! Deep breath. Make it work. We headed back out. Made a make shift bed with a few comforters. She was so happy. So appreciative! Thank you so much mommy! I ask myself, how can I be so selfish to take this away from her?! It all worked out. Last night we had the brand new 18” high mega air mattress. More memories made, camping out in the yard.

It’s times like these that remind me of how lucky I am. Calm down. If it stops working we move on to the next plan. More importantly, it helps me to remember how it’s very possible I may have not made it to experience bike accidents, bruised ribs and agonizing “sleep” on the cold earth’s floor without God’s grace and ab122. Good or bad, I am here! I am HERE! I am here. These tears today are different. I am here and my worries were for nothing. My lipase is now 7. Too low. How ironic and also not a concern.

I love my friends and my family. Thank you for your continued prayers and thoughts. I wish the same to you during this time of turbulence. Speaking of wishes…happy birthday today to my wonderful brother Bill! I’m so proud of you and my heart screams love when I think of you and how you have never left my side during my “journey”.. thank you and HAPPY BIRTHDAY!

Also, a very special young man celebrated his 22nd birthday a few days ago. Happy birthday Ben Keegstra! I’m so proud of you! You are brave and amazing! Always thinking of you even though I’m always late sending you a card. I love you.

Wishing you all happiness beyond measure!

THE END.

HEALTH UPDATE: Well…I fell off my bike again. I had my helmet on! Bruised ribs this time. I’m in a bit of pain. The good news is that the bike injuries have been worse than my side effects. Ha! I was riding and needed to slam on my breaks to avoid a crash. Fell over on my side in the grass. Landed on my side and punched the snot out of tumor monster from the outside. Weird. Maybe it was meant to be that I fell and punch that loser tumor. I had x-rays. Nothing broken. Other than that, I now have allergies. I’m still coughing and stuffy. I am also still experiencing body aches and joint pain. It’s in my hands. Otherwise good to go. I’m active. I’m having one helluva summer!

Ramblings…

It seems that I’m now on a regular routine of treatment. It could last for a while and I hope that it does! It’s an easy routine and I’m blessed beyond measure. Please pray for me that it continues. I mean, it would be fine if the immunotherapy shrunk the tumor monster small enough to have surgery so I could be rid of it all together, however, I’m not sure how that would look. It would be a major surgery and I’m sure has the potential for complications. Of course my mind is fast forwarding again. Trying to predict my future. Just stop. This is day by day. Beautiful day by beautiful day.

Our summer has been nothing less than extraordinary. Under the circumstances, we’ve made the best of our time quarantined together. Willow is a gift. Just watching her grow and develop has been magical. I know how lucky I am to witness this first hand. We have water balloon fights, lots of chalk art projects on the sidewalk, break out the pool once in a while and wave to the neighbors as they walk by. We just got a giant jenga game too. We used to all ride our bikes but I’m sitting that one out until further notice. LOL! Who says you can’t have fun staying at home for months on end?

In between the playtime there is rest. There is healing. There is a lot of reflecting. I sit in my chair in the driveway and often my focus leads to the leaves on the trees. I’ve never had time to think too much about leaves. I look at them so differently now. I look at them and wonder how many times I will see them change. How many seasons will I be here? Will I miss the seasons when I’m gone? I most certainly will. It’s a gift from God to have a new change around the corner as every season comes around. New seasons bring old memories for me. Summer takes me to my childhood in the country. Kool-aid, macaroni and cheese, eating rhubarb pulled fresh from the dirt and grass forts. Fall takes me to my adult life. Happiness, football, pumpkin spice everything and the smell of a campfire. When I think of winter I think of Christmas with my family, sledding with Willow in our backyard and snow storms! Praise Jesus for spring. By the time it comes around I’m grateful the cold wet snow is over. Newness is everywhere. Thunderstorms. New year, new flowers, new hope. So much to be grateful for!

I try not to let cancer change me. But it has. I feel like I’ve always appreciated the little things but now it’s severely fine tuned and extreme. I’m so happy and in awe I really don’t want to leave. I live in limbo. It’s the strangest thing. I would say the most consistent thing throughout my experience has been how much I’m amazed that I still cannot sort my feelings. I’m usually black and white. I make a decision and stick with it. The thoughts about life are so scattered and so extremely different from moment to moment. I can be watching Willow sing and dance. She’s so beautiful and theatrical. I’m so proud and so happy and in an instant, I remember. Oh no. What will she be like when she’s older? Will she pursue this interest of hers? Will I be witness? Maybe. Maybe not. I suppose this is something we all have to consider. Especially with a pandemic in progress. So then I go full on “live in the moment”! Carry on! Wow. This is a true and solid ramble. I don’t even know what I’m trying to say…but this is what my blog is about. Random thoughts from a cancer fighter who is unsure of her own mortality.

I would like to give a big shout out to my favorite Mom in the whole wide world. My Mom, Priscilla Evelyn! She is celebrating a birthday tomorrow. She is so sweet. She’s so talented with the most beautiful art that makes so many people happy. She is so strong. She is kind and never complains even though she has plenty to complain about. Her courage and strength she has shown throughout the years battling MS has been nothing short of inspirational. I’m so proud of you. Thank you for always being there for me Mom. Happy Birthday! I love you!

HEALTH UPDATE: Wow, I’m so freaking lucky. Blessed. Fortunate. I’m blown away at how something so incredibly evil could turn into many blessings!! I’m at uw hospital at this very moment waiting for my miracle concoction to be prepared and administered. More good news today. Although my scan revealed that tumor monster has not shrunk but just a bit since last time, it is stable. It’s possible that it is dying from the inside now. I had the pleasure of meeting the Doctor leading the trial I am participating in. What a wonderful human!! He was very happy with my progress. I found out that there are only a handful of participants in this study. It stopped when covid hit. I’m doing very well compared to the others, due to the large number of mutations in my tumor. We will be continuing on and hoping for the best to continue!!

Ramblings…..

It’s been a week. I had my ct scan Monday and waiting for results sucked. It’s never fun but this time around I let myself get all worked up. What if, what if?? I’m so extreme! I’m mostly enjoying life and feeling good. Then I remember. Oh yes. Pancreatic cancer. Gasp! I get gasps every time I tell someone I have pancreatic cancer. Gasp!!! Oh no, not that one! Buh bye! So sorry. But no! I have the rare one that’s still deadly but not AS deadly! I find myself talking them down. It’s okay because I think I’m cured! Have you heard of immunotherapy? I know I’m not cured. I just feel like I am! Once again, the mind can play many tricks.

Seriously. I am so lucky. I look back at the most turbulent times of my life and timing has always been on my side. This cancer gig is no exception. The trial started in September. I was diagnosed in December. Started the trial March 13th. The trial stopped when covid hit. What. The. Heck. I got in just in the nick of time! Isn’t it crazy?

Today I am more thankful than ever. I’m hopeful and I’m looking forward to all the little things that life has to offer. I pray for all of us, that we remain safe from covid and that we all can experience something good every single day.

HEALTH UPDATE: Happy to report that my health has been uneventful! I’m well. I have good energy, I’m active. I still am experiencing lots of muscle and joint pain. It’s a small price to pay for life. Last week Wednesday I had another immunotherapy treatment. With each trip to the hospital for this incredible miracle drug, I have several blood tests. I am absolutely amazed at the results. My hemoglobin was NORMAL for the first time in nearly 2 years. I am no longer anemic. Blood transfusions were unsuccessful in the past! I’ve gone two shopping online orders without my beloved oreos. My glucose was 112 which is good for me. Liver and kidney functions are good. They are closely related to my disease so we keep a close eye on those. I really can’t get over what a miracle this all has been. I hope and pray that it lasts. The thought of how many people this drug can help in the future is thrilling. I can only imagine how rewarding it is to be a researcher. A life saver. Someone that really changes lives! I wish I could meet them. Shake their hands. Pretend there is no COVID 19. Hug them! I really pray that ab122 will help others as it has helped me and that it goes ALL THE WAY, BABY! and becomes an approved treatment.

Next treatment for me will be on July 15th. I will have a CT scan on July 13th. My oncologist will be out of the office so I will meet the doctor that is in charge of the study that I am in. It will be nice to meet him and thank him personally. So exciting!! Thank you for your continued prayers!

Ramblings….

Here comes another tornado reference. I’ve got a tornado in my soul! It’s swirling like crazy! Like hot and cold air masses coming together, my feelings are so extremely happy yet so sad and anxious! I’m comfortable at home. I feel safe. I feel like if I leave I will get the virus. The stakes are high. I’m doing all I can to make it fun for Willow and for us. It’s working. We are making a lot of memories! I also need to get OUT! I need to see my family! I need to see my friends! I love and miss them dearly. I need hugs. I need normal! I know a lot of people are out and about. I just can’t do it. Yet.

We had planned a wonderful social distance outing today at my Mom’s house. I couldn’t do it. Too many questions. Are we all safe? Could someone be a carrier and not know it? Willow had a fever last week. She tested negative for covid but is it reliable? More waiting. Waiting to see if the cancer will ever be gone. Waiting to see if covid 19 spreads like wildfire in our area. Waiting and praying my family and friends stay safe. I’m so disappointed our family gathering is on hold but I feel so good about taking the safe route. All of our lives are just too precious! Yet another good reason to fight, fight, fight! Fight for the day we can all be together again!!

The good news is that we have so much to do while we wait! It’s a big week at the Hannes household. Week of TOM! Many years ago, Tom celebrated a birthday of mine the entire week. Week of (insert birthday person’s name here) was born! Every day he gave me a gift to represent all my senses. So adorable! We’ve drifted from the daily gifts but in general, my birthday guy will have his choice of meals, activities and personal space this week! We will….wait for it….be hanging out in the driveway! Feel free to stop by to honk and say hi!!

Happy birthday to my Tom! We’ve had our ups and lots of downs but at the end of the day, you will always forever be my true love! WEEK OF TOM! Welcome to the 50 club. Time to get your colonoscopy dear! Womp, womp, lol. I love you!

Many blessings and lots of love to you all!

HEALTH UPDATE: Living the dream! I have pains and things here and there. Paranoia is kicking in but overall I’m really good. I’m active. I’m living. I rest when I’m tired. This week I will have immunotherapy treatment #6 on Wednesday.

Ramblings….

My Dad. Carl Edward Heussner. He was tall and thin. His nickname as a young man was Barley. He had a very serious voice. I’d be lying if I said he didn’t scare the crap out of me when I was little when he was angry. I didn’t understand why he would be angry. Now I do. He had 5 kids by the time he was 32! Why?? And thank you! Dad and Mom built us a playhouse. It was a real house, made of wood. It had a ladder that went to the top floor that was open to the sky. My Mom painted hippy flowers all over the exterior of our playhouse. It was really cool.

Dad was a hard worker. He rarely sat still. He provided for all seven of us. The house where we lived when I was born was out in the country on a few acres. Dad had a huge garden. He would have us kids plant, weed and harvest the garden with him. Mom would can the vegetables. I remember going to the garden and plucking tomatoes and cucumbers out of the dirt, wiping them off a bit before gobbling them down. I remember family bike rides out in the country. We didn’t have helmets back then. We went camping a lot. Dad could make just about anything. He made a “camping kitchen”. It was a big wooden box. One side had hinges and came down for a table. Inside, there were cubicles for all our kitchen stuff. Plates, stove, pans, lantern, utensils, salt n pepper, table cloth. Each item had a place in the camping kitchen. It was built to perfection. We would load up into the family van and away we would go. Loved that van. NOT. I named her big Bertha. She was a two tone brown Chevy van, three on the tree. I was expected to learn how to drive Bertha but refused. I would ride my bike in the rain before being seen in Big Bertha. I was a snot. A real brat. I had expectations of a cool ride. I gave my Dad a hard time. He provided for me but it wasn’t good enough. I look back feeling embarrassed and ashamed. It wasn’t just Bertha. It was a lot of things. His authority was a big one. I just wouldn’t have it.

We certainly had our issues throughout my teen years. He pushed me. I pushed him. I was just as stubborn as he was. One fight was particularly bad and ended with harsh words from my Dad that I’m sure I deserved. “When I die, it will be your fault”. My interior melted but I could never let him see my exterior crack. I understood as our relationship became close during my adult years that I was just as much to blame. I wanted so many times to bring it up and say how sorry I was…but I let it rest. He wouldn’t even know what I was talking about. We were on very good terms. I loved to be with him and my mom. Even though he never was one to say “I love you”, I knew that he did. Not with words but with his actions.

Then it happened. Cancer happened. My Dad had cancer! I was shocked, sad and so scared! He was our family’s sense of reason. He took care of my Mom! He took care of us! How could this happen? I had never been as close to someone with cancer. What does it mean? Will he die? The worry was painful. Something kicked in. I needed to be there. I was. I sat in on many appointments. I tried to help as much as I could. I realized cancer doesn’t always mean you will die. Dad did well with treatment for his bladder cancer. There was a new normal and he adjusted well, on the outside anyways.

Then it happened again. Dad has cancer again? A different kind? Multiple myeloma, cancer of the plasma cells in the bone marrow. What kind of sick joke is this? Here we go again. Well Dad is tough as nails so lets do this. But this time was different. This cancer was a beast. We had many serious talks, Dad and I. We often looked at each other after the appointments that brought bad news and would shrug our shoulders in agreement. What happens will happen. He will continue to fight, that’s all he can do. I could tell though that his faith was wavering. He was not happy with God. I was the opposite. I felt that God was the only one that could save us no matter what the end result! It changed me. My faith that I had ignored over the years was renewed.

I’ve written before, not long ago, about the drive to the hospital. Just me and my Dad. He was in bad shape. After tests and scans it was determined it was his time. They estimated he would be gone in a week. What?! So soon?! I’m not ready! It’s not like I didn’t know it was coming. It was still devastating. We made arrangements to go to hospice in Johnson Creek.

I’m one of five children. I never had an overflow of one on one time with either of my parents. The day leading up to Dad’s transfer to hospice was different. I had time all to myself. Just me and Dad. I had arrived early that morning to his hospital room. It was just the evening before that he was told he wouldn’t survive much longer. I sat down. My eyes trashed from crying for hours on end prior to my arrival. We held hands. Like never saying “I love you”, we looked at each other in silence. I didn’t need to hear any words. Our shrugs played back in my mind. What happens happens. Let’s pray? I got a feisty “why!!??” in reply. Dad! Don’t give up on your faith that you’ve believed in! Especially when you need it the most! He grumbled. I respected his wish. Sister Melanie joined us. We laughed a lot as we reminisced. Dad was quiet. He rolled over, his back to us. Maybe this was too much. The next thing I know, he said something that I never imagined I would hear. “Cathy. It’s not your fault.”. I jumped up. “He remembered!!!!”

I had one more opportunity to be all alone with my Dad. The ambulance ride to hospice. I cried my eyes out. He passed away a week later but not before a final blessing from his priest. He waited for that prayer. I knew he wouldn’t give up on God.

Happy Father’s Day In heaven Dad! Thank you for the tough love and life lessons. I love the life you gave me and many of my strongest traits are ones you instilled in me. I wish I realized how special you were when I was younger. I’m sorry I was a shit!

xoxo!!!!

Well actually, it is pretty funny but only because I’m okay. I FELL OFF MY BIKE! I’m OKAY! Technically I wasn’t even on my bike. I was trying to get on my bike and fell backwards and my head hit the concrete. HARD. It was a real shit show. Willow, my sweet hero, went and got daddy. I was a bit woozy so didn’t want to get up. Hero Tom called 911 to see if I should go in and the next thing we know…..sirens. I walked to the ambulance myself. Had a nice ride. Found out that because I’m taking blood thinners I was officially a TRAUMA patient. Oh my! I had an entire team. They cut off my shirt! I got a free paper one to wear home. There was an iv, x ray and ct scan. All were good. Very good service at UW emergency room, once again. I even ran into amazing Ray the nurse who assisted me with a high fever visit. He is SO NICE!! I’m counting my lucky stars once again. I will never go on a bike (or try to go on a bike, lol) ever again without a helmet….no matter what the excuse. Not if I’m just riding it to the house next door. Not if I’m reminiscing about my childhood and how good it feels to let your hair blow in the wind. Not on a day when my hair is clean and looks good and I don’t want to squish it. Nope. I will always wear a helmet.

Love and hugs to you all!

HEALTH UPDATE: Immunotherapy treatment #5 completed June 3rd. It’s been a peaceful week. Pain remains in my legs. I feel a little “off” but overall feeling very well. It’s truly amazing and I thank GOD for this chance to LIVE!! Next visit to UWHC is on the books for June 24th.

Ramblings…

I’m gaining weight. It’s freaking me out. I’m so happy that I’m better and things are headed in the right direction. It’s what we all have hoped for. I’m alive! I’ve read that weight gain can be a side effect. I do not have a definitive answer from the doctor about that. I will say that I’ve mostly maintained my current weight once I stopped the “all you can eat” sweets buffet and switched from spaghetti o’s with meatballs for a delicious spinach salad with cucumber, tomato, feta, craisins and a drizzle of balsamic vinaigrette for lunch. My stomach also seems to now allow much larger portion sizes. Well if the door opens, I’m going to walk right in. So now I need to watch how much I’m eating. My free for all was fun while it lasted but now it is over.

I’m disappointed in myself for prioritizing a smaller body for being healthy and continuing to live longer. How shallow am I? It was so easy to lose weight before. That has never happened to me. I didn’t do a damn thing except feel incredibly awful for over a year. So easy! So easy compared to the guilt of every thing that goes into my mouth, feeling bad about what I’m looking at in the mirror every day and just that overall feeling of hatred for myself for not maintaining a healthy weight. I’m realizing just how much I’ve tortured myself throughout my adult life because of my weight.

Those days are OVER! I’m stronger now. I’ve been given another chance, no matter how short or long it will be! I need to fire up for the next round of misgivings. If tumor monster wants to pull a fast one and start getting all big on me, I need to be ready. If there is a major surgery in my future, I need to be ready. I need to be even stronger for me, for my family and for my friends. I’ll need your prayers. I’m not perfect. I have the brains to do this but not the will at times. Okay, hardly ever. LOL!

I dug out the bike today. It was AWESOME! It felt so good until I got off and had sore rubber legs, lol. Willow had an absolute blast watching me race down the street. She is a wonderful motivator. Her smile and giggles were heartwarming! Tom got his bike out too. What started for me as, better start exercising, can’t use the cancer excuse forever (lol) turned out to be fun for the whole family. While we continue our quarantine at the Hannes home, we continue to live, laugh and love together. We get grumpy too, don’t get me wrong. Including bikes to our happenings today added much more than I expected. It was a great day!

Peace and love to all!

Cathy

HEALTH UPDATE: Tumor monster has shrunk an additional 22%. I saw the scans. It’s incredible. Labs are just as amazing. Of all the tests, only 5 are wonky. I think when I was first diagnosed only 5 were normal. Ha ha. Just kidding but sure seemed like it. Next treatment is in 3 weeks and another treatment 3 weeks after that. We will also likely do a scan 6 weeks from now.

As I suspected, my oncologist is not exactly sure what to expect given the rare circumstances. My prognosis is unknown but acknowledged that it is better than when I was first diagnosed. She isn’t sure if the immunotherapy could knock the whole thing out or if it will ever come back in the future should I be lucky enough to slay this monster. I am certainly rare. With that comes few answers. Time to coast for 3 weeks until my next visit to UW Carbone Cancer Clinic.

Ramblings….

SO. MANY. EMOTIONS. My day started good. Woke up, got ready, drank coffee, ate my oreos. The drive in was pretty. Sunny sky, beautiful scenery down John Nolen Drive. My favorite street. Capitol and lake views. Life is but a breeze. I’m calm and ready for this appointment. This appointment that will give more insight to what my future holds. It can get so deep if I let it. Today I let it. I let it get deep because today that is just the way I am. I’m opening the door to all the different feelings I’ve experienced in the past 6 months. Opened the sun roof and just let it out! Wahoooooo!!!!!

A very familiar song begins to play. You never know what you will hear when you put it on shuffle. I went from White Snake to Josh Groban, Ave Maria. My Dad song. I love and miss my Dad! We picked this song to be played at Dad’s funeral. It’s my #1 played song of all times. It connects me to my Dad’s last days so I don’t forget. I don’t want to ever forget! When I hear the song I go back to that time. He was eating breakfast and could hardly sit up. Brother Ben was there and made an incredible breakfast. Scrambled eggs with mushrooms, onions, green peppers and cheese. Bacon. The whole works. I was to take him to chemo that morning. We went to the ER instead. Just me and Dad. He was alert one minute and gone to a different zone the next. He was a fighter. Man, did he fight. He was admitted. The news was not good. It was close to his time. I rode in the ambulance with him to Hospice. Just me and Dad. He was brave. While alert, he pretended like he didn’t know what was going on. He was always the protector. One week later I was by his side along with our family. Father came for a final blessing and just seconds after he blessed my Dad and we said a prayer he died. He was gone. As hard as it is to go back to that time I will cherish it forever. Words were spoken and glances were given when the words couldn’t come out. We knew that all of our differences were long gone. Our hearts were broken but at the same time healed. Being together for his unfortunate cancer journey is something that I’ll never forget. So yeah…that song….it reminds me of that time. Reminds me of my Dad.

Wonder why I’m emotional today, right? I get to the hospital. I get my labs drawn. I go back to drop off my other sample and I have a gentle touch on my elbow. It’s a beautiful nurse. She sounds familiar as I know she’s poked me before. Her eyes are so caring. We all have masks so it’s much easier to focus on her eyes and on her voice. She hands me a t-shirt that says “I am loved. Carbone Strong”. It’s a beautiful gesture and I am so touched. She refers me to an article of the origination of this gift and it really goes to show how caring nurses really are. I knew that already. With the covid epidemic patients are not allowed to bring a support person. The nurses have fallen into the caretaker role beautifully in this absence. These shirts are their reminder to us that we are loved! We don’t have to go through this alone! Someone! Give me a tissue! So sweet. So appreciated!

Next up, my oncologist. I’ve been unfair to her. I didn’t like her message at our first meeting. How do you tell someone they are pretty much doomed? Looking back I should not have been so critical. From a professional and knowledgeable standpoint she’s been spot on. I’ve been anxious about this appointment. By now I’m a ball of emotions. It’s good to see her. One on one. We haven’t been able to have this luxury since the covid 19 outbreak. She is smiling. I can’t see her mouth but her eyes are squinting. Smile squint. She confirms what the coordinator leaked out to me on the phone. The tumor monster has shrunk again! 22%! On top of that, my labs are looking very solid. We will stay the course. We will continue treatments and see what happens. Might even chat with the surgeons after the next scan.

I asked if I could have a drink. She did not answer for several long seconds. With no response I added, “just a couple drinks, no big deal”… We negotiated. She said one drink was okay. That’s fine with me. I’ll probably chicken out anyways. Lol. We continued to discuss my situation. She said my scan was “awesome”. My other symptoms seem so minimal that all systems are a go. In other words, this is all soooooo CRAZY!

I’m trying to wrap my head around how lucky I am. This is a freaking miracle. Against all odds I am having these incredible results. I looked at my doctor and told her I thought I was in trouble before we started the immunotherapy. I was so sick. She looked at me and said, “you were”. I was! I knew I was! Wow. So now I’m feeling amazing. All of these miraculous things are happening. What did I do to deserve this? How can I be so low and so full of hopelessness one day and so full of hope the next day? I think I have survivor guilt and I’m not even out of the woods yet! But here is the thing. So many people don’t get this chance. They suffer and they fight to no avail. I pray for them.

Do you believe in miracles? I do. I’m living it. Never give up and fight, fight, fight!

Nothing but love for all!!

Cathy