Week of me

HEALTH UPDATE: I’m stable and very much alive. Treatment went off without a hitch on Wednesday. I had one slightly elevated lab result that stood out because it has not been elevated since before I started immunotherapy. They say it’s ok and I’m ok but we know better. It will bother me until it goes back to normal. Otherwise, mental and physical health are much improved.

Ramblings…

I will be honest. My prior post was somewhat of a desperate time. So much worry. So many emotions. I needed time to process a lot of issues. Once again, time is on my side and I’m able to see more brightness than dark. Damn, that’s a good feeling.

My heart is filled with hope as I enter the week of me. I have a birthday coming up. Many years ago, Tom came up with a gift for me for each day during the week prior to my birthday. He covered all my senses with candles, my favorite foods and I can’t remember what else. Hey, it was probably 20 years ago, lol. The “week of me” was born. It’s the best family tradition ever because whoever has the birthday celebrates the week of them! After me, it will be “The week of NOLAN!!”, my nephew! It’s just fun. This world needs more fun!!

I’m actually not one to celebrate my birthday. I’m not sure why. I internalize my excitement. Completely!! I’m not overly excited but I know that on my birthday I will take a break from any and all pressure. It will be a day I let everything go. I’m going to eat the cake and love it. I don’t need the hoopla of going out on the town. A day of snuggles suits me fine. A small gathering with my family is more than I could ever dream of.

I reminisce birthdays past. Denise B is a friend from elementary school. Her birthday was right before mine. She had one of the best, most memorable birthday parties that I can remember. Why? Tacos. They served the best tacos I had ever had. I think I was in 4th grade give or take a few years. I remember that day. I was so happy! The leaves were everywhere. It was raining. The smells and feels if autumn were incredible. A few days later it was my birthday.

A few others stick out in no particular order. 10-10-10. How cool is it to have a birthday on 10-10-2010! I wasted no time to make a big deal out of it. I had a great party and raised some money for some wonderful charities. Oh, the love!!

Last year was very special. Sister Melanie and I had a very amazing party for two. She spared no expense. It was a hard year. We had been through so much together. The birthday really was worth celebrating as I had come so close to not having another birthday just months prior. I was emotionally overwhelmed. It was an amazing day.

Growing up in a large family, there were always chores to do. Not on your birthday!! Wahoooo! Sitting back and watching my siblings doing all the dishes was the best of all gifts! I won’t lie! We always got to pick our favorite dinner. Mine was spaghetti with Prego sauce out of the JAR!!! Lol! I was fascinated with it after growing up with homemade sauce from canned tomatoes from our garden. For the record, I’m back to the homemade sauce with straight up tomatoes and spices. Thanks mom!

Ahh. Another birthday that was not supposed to be. How do I comprehend thoughts about this? It’s pretty incredible. It’s all going too fast! The feeling of gratefulness is so overwhelming it instills the belief that every day is truly a gift. My focus will continue to be living life each and every day. There is no time to waste.

Nap Time

HEALTH UPDATE: Stable with a continuing case of itchy bumps and a new diagnosis of a broken toe. Scan #??? is stable and labs have been drawn. I’m so lucky.

Ramblings….

Hello world, it’s me. Cathy. I have been wildly busy with life. I’m sailing along in this sea of cancer with tears, fears and also many cheers. I am still in a state of shock that I am still here. It’s hard to wrap my head around it, to this day! I’m really needing to live in the now. Don’t look back. Definitely do not look too far into the future. But that’s not me. I will always be paranoid. It’s getting worse in many ways. I’ve now convinced myself that it will not be cancer than ends my life. It could be heart problems from the medication I’m on. It could be covid. It could be a car accident. I just can’t believe I can still be stable. It feels like it could last forever. Why must I always then think of another likely demise? WHY? I have a new therapist and so far I’m wildly impressed. First thing is to get past this paranoia and live in the now.

The now is wonderful. I’m so in love. Almost everything is absolutely beautiful. For the ugly things, I am still able to almost always find something good to say. I have mastered the negotiations of being at peace when everything most certainly can never be perfect. I’m good with that! I’ve accepted that the best life for me now is a life with peace based choices. But I also know that people with my disease do not usually live too many months, let alone years. As I near the two year anniversary of my diagnosis, I can’t help but think about not only how lucky I am but also….how long can this last? Really? Realistically? How long?

I read my scan results at 2:00 am this morning. I woke up and my first thought. Results! Zing. Login. Like I’ve been up for hours. How fast can I read? It’s stable. Tumor monster is stable. Just hanging out to torture me. There were a few new words in the details to Google. More of a learning experience than anything. Oh! That’s a fancy word for clot. Yeah. That clot is still ruining my chance for surgery someday. It’s ok for now. I’m stable. I tried to calm down and fall back asleep. I woke to “Mom! You’re snoring!”. Oh my.

It wasn’t until later in the morning. I couldn’t stop the tears. Wait?! I’m supposed to be elated. I have more time. I thank God above for allowing me time . Precious time. Time to realize what God means to me. Time to spend with family and friends. My negotiations with myself commence. What are you bawling about? I think I made a mistake. I think that no matter how much I tell myself it’s all ok and no matter how much I tell myself I’m sick and tired of allowing scanxiety to ruin me….it is most obviously unavoidable to suppress those feelings of fear and anxiety. It’s too big. There is too much on the line. For now anyways. Maybe I’m just extra sensitive right now.

Tom and I are moving our office things to our home offices. As I go through the token banker boxes of personal items and supplies I’m reminded of the only life I knew for so many years. The working life. It was a life that I also loved. I was so proud. I was so exhausted at times. Bathroom breaks were a luxury. I rarely ate lunch for 20 years. I loved the thrill of it all. The expectations to be available to my clients 24/7 were accepted and appreciated. My life is no longer that way. Not physically. Not mentally. So many good things have come from cancer. This one makes me sad and sentimental but it won’t take away my love for real estate. I’ll keep my license and pay my dues. I’ll always be available to chat to anyone about the bat shit crazy market. Not the same but I’ll take it.

My labs are good. I’m now in the chair at the chemo clinic waiting for my juice. The chair is broken. I like it more upright. Maybe a sign I need a nap. On another note, no matter how good it sounds, do not get the taco salad when you know you need to wear a n95 mask for the next several hours and you are a GI patient prone to burps. It’s the salad that keeps giving.

If I were to take a nap, I would want to dream about a cancer free world. A world where the lesson of living life like there is no tomorrow would be a choice “just because”. Enjoying each day to the fullest wouldn’t have to come because you suddenly realize your tomorrows are not a given. Expectations for monetary gain and materialistic things are low. What a dream it would be. This is just my dream. Everyone has different dreams and goals. I’m so happy for the people who achieve them. It’s hard to get everything you want out of life. It makes it that much sweeter when it happens.

Sweating

HEALTH UPDATE: Covid vaccine shot #3. You are such a bitch. The side affects are so gross! I’ve gone through two rounds of teeth chattering, followed by a mound of blankets, followed by profuse sweating. Let this be it and let’s hope it’s all worth it. Otherwise, coasting and feeling ok.

Ramblings…

Fevers. They take me back. Back to the time before immunotherapy fixed me. So many memories and feelings of the beginning of what I thought was the end. I fell into the black hole swirling in the floor yesterday. I don’t like to go there but it was inevitable. Fevers remind me of how real this is.

I hate the reality of it all. I work so hard to look at the bright side. Enjoy each day! Make memories. Good ones. Be kind. Do good things. Crazy things! I’m so lucky these positive affirmations have gotten me through the past 22 months. A fever can erase it all. Temporarily.

My reaction to the jab yesterday changed our plans. Tasks were moved to a different day. Tom took over. He took care of me. Took care of Willow. Just like he did back at the beginning of all of this.

My family was concerned. Willow asked, are you ok mommy? It was awesome to be able to reassure her that this was temporary. I would be well again in the next day or so. I wept in private. What happens when I won’t be able to make that promise? What happens when the drugs stop working? I can’t let her go through this!

The hole in my heart got a little bigger today. It’s so incredible how a fever can just take me back to all the old dreadful feelings. I’m excited to be rid of this fever so I can get back to my happiness!

Still

HEALTH UPDATE: Holding steady!!! Labs are good. PT is really helping my knee to just be grumpy and not so angry. Weakness in the legs persists but that’s ok. I’m so lucky.

Ramblings….

Oh where do I start! If you follow me on social media, you likely know by now that I completed the rappel 14 stories off the Hilton Hotel in Madison. It was every word that is spectacular. From the support to the excitement of doing it! From my fierce cheering section to the $3,620 collected! I thank you!!

Next up. More living. It’s more important than ever. I need to squeeze more in. This week I started with preparations for school. My sweet girl will be attending a beautiful new school just a few minutes down the road. I’m so excited I can hardly stand it. Of course I’d prefer if she stayed right by my side as she’s done for so many months, however, the time has come. She needs friends. She needs a teacher who is not her mom or dad. It’s time. Please covid, don’t screw this up for her!! The preparations seem endless. Online registration. Past health records. New epi pens. Doctor forms for epi pens. Plans made with school nurses. They are absolutely wonderful. I won’t lie. Willow’s allergies have crippled me with fear in the past. The wonderful nurses I spoke to have calmed me. Thank you nurses. I love you and will be forever grateful. Clothes. Tennis shoes. She needs everything. School supplies! It’s all so fun! This is an experience I’ve always wanted to have. I’m so grateful to be here. SO GRATEFUL!!

I’m at the Carbone Cancer Center right now. I’m waiting for a room. Spa day. I love spa day. It’s so busy here today! I can feel the nervous energy of the delta variant. Everyone is getting back into the groove. Today I had the pleasure of meeting with the fabulous Dr. B. He heads up the trial that I am on. I really enjoy his smile and positivity. Like, really!!!! He asked how I was and I felt strongly that words just were not in order. I whipped out my phone and showed him my rappelling video!! You did this Dr. B!!! Your trial is saving me so I could do this!!! I think he was thrilled and amazed. I could be wrong. He’s a nice guy. He would have been excited if I had shown him a picture of a garbage can! Lol. I was proud to show him and I hope he’s proud of what he is doing to help people like me.

Now it’s time to get down to business. I’m thrilled with my current condition but I’m antsy. What is going on inside of me? Is the tumor monster dead or alive? My expectations are low, but a part of me is wanting to be free of this disease! Can I become the ultimate miracle? I’m already a miracle but how far can I go? I’m not looking for proof today. I know the status of my disease can only be determined by biopsies and scans. I want Dr. B’s opinion. I understand my case is rare. I understand he has no science to make a determination. I know acinar cell carcinoma is so rare there is little to zero research, especially a tumor with so many mutations! The short answer is that I am doing SO WELL. It’s incredible. Living life and positivity is where it’s at!! The long answer? I still have tumors. He thinks there could be cancer cells that are smarter than my immune system lurking. These little f’ers coukd be lurking and trying to figure out how to grow. Blood results can be normal during this lurking phase. A pt scan may or may not detect this activity. I found that so helpful. Now I can get that scan out of my head. I’ll wait until March when the trial has me scheduled for the scan. I asked about the clot in my vein that is deleting my option for surgery. He thinks it might be scar tissue. Never to be removed. Not ever being able to have surgery may sound alarming to some. Not me. I’m not going to worry about that until it’s the only thing left. I’ve just read so many testimonials of people that have gone through it only to lose quality of life and have recurrence just months later! Good thing it’s a non issue right now.

I asked about the side affects that others have experienced. Like death. Two people in the same trial that I am part of have not made it. Yes, there is the possibility of myocarditis (heart) and now a lung issue…but the risks are low enough that the positives outweigh these risks.

Overall, I’m still doing great. I’m still stable. I still have no idea how long I will be stable. I still have no idea what my future holds. I still know how lucky I am and the most important thing? I’m still determined to live my best life!!

Over the Edge

HEALTH UPDATE: I’m doing well. I have no new symptoms. I have started another round of physical therapy as my legs get very weak and my knee hates me. I’m still looking for a therapist as the emotions of all of this can be a challenge. I have my 27th immunotherapy treatment scheduled for next week on August 18th.

Ramblings…

It’s been so long. I feel like my blog has been pushed off to the side. Today I really need this. I cannot stop crying. I’m over the edge. Mostly with grief for my friend Walter who passed away very suddenly from a heart attack. He meant everything to us. He lived next door and was our every day happiness. I’m really not sure of anyone else in this world that we all, in unison, would yell his name every time we saw him! Well, I take that back. We yell his love Lisa’s name too. Callie as well, their sweet dog and Willow’s BFF. He has been gone for a little over two weeks. It’s getting harder. And harder. Tomorrow is his celebration of life. What a celebration it will be. I’m guessing grief is like this. Celebrate one minute, crumble the next.

I’ll also be going over the edge tomorrow for Gilda’s club. Like literally rappelling off a 14 story building. I’m still not nervous. I don’t know why. I’m glad I’m not nervous. I feel excited and proud to do this. I’ve raised $3,055 and I’m so very happy it will go towards such a fine organization that helps people touched by cancer. I have an idea in my head of what it will be like. My goal is just to take it all in. I have decorated my shoes and also my socks to give me strength. The one thing that just struck me though…what if a freak accident happens? Is this really selfish of me to do this and put Willow through worry? Up until this time I was thinking it would show her strength. Not physical strength because honestly, I’m really hoping this isn’t too hard to do physically! LOL! Emotional strength! Don’t let cancer kick you in the ass! You gotta kick cancers ass! Don’t let it stop you from what you want to do!

I’ve been wanting to write Willow a very special letter and have been putting it off. A letter that is only to be opened upon my demise. Although I’m sure this event will not be the cause, it gave me enough pause to write the letter. It was difficult and beautiful all at the same time. I feel good knowing I have shared with her my feelings for her should the worse happen and would be elated if the letter can give her comfort and hope for her future without me. I know she can do it! She is a truly amazing human. I cannot put into words what she means to me.

There is more. I got a phone call yesterday from the research folks that are running the trial I am on. There is another disclosure/consent form to sign. Another person on the same drug as I am has passed away. They cannot share too much so I don’t know if it is the drug that caused this death. It leads me to question my mortality yet again. Am I killing myself taking this drug or is it saving my life? It could actually be both! I do not want to spend too much time thinking about this because I will never have the answer. All I have is the NOW. NOW!!!!!

I’m going to take this day, wipe my tears and live the CRAP OUT OF IT! Then! I’m going to wake up tomorrow and live the crap out of that day too! And so on and so forth. LIVE, LIVE, LIVE! I love this blog. It’s like the insecurities just keep building. I turn on the puter and type type type! I’m telling you! The answers to my issues are within! They come out when I express my inner feelings! It’s the best and most economical healer I’ve ever known.

As always, I’m lucky and blessed beyond belief. My heart is so full. Thank you God, thank you family and friends!

Footwear for the rappel.
My mom always makes me feel strong.
We drew hearts on Lisa and Walter’s driveway.

Scanxiety! Be GONE!

HEALTH UPDATE: Holding steady! Bum knee (injury, I believe), Shit for brains (menopause), tired and achy. So in other words, absolutely fabulous and SILL HERE!

Ramblings…

It’s scan day! I go in at 3:00 p.m. It’s a weird time of day for a scan. Usually I’m in bright and early. I am instructed to not eat or drink for four hours prior to the scan. It’s so easy in the morning. Yes! I miss my coffee dearly! But I really don’t usually eat early in the day so it’s a breeze. Today I flubbed up. I warmed up some bacon for Willow. We had BLTs last night with tomatoes from our garden! It was so incredibly incredible! My appreciation for the small, warm and bright red fruit was immense. We grew it all on our own! Imagine that! Can you? I sliced them up and like a mouse snitching a cheese crumb off the floor, I catch Willow behind the counter top snitching tomato slices! It was so cute but left our supply dangerously low! I had to put the remaining slices out of reach which is actually not easy to accomplish. She’s growing into such a big young lady! So anyways, I warmed up leftover bacon for Willow for lunch. I spotted a juicy crumb the size of a pea. Bam! In my mouth. Bacon! It. Was. Bacon. Oh shit! I’m not supposed to eat. Too late. So now I have my excuse if there is a new sighting in my results. It must be the bacon! Certainly not a chunk of deadly cancer!!! LOL!

I’m approaching this scan differently. I’m so incredibly tired of carrying my burden of worry. This time, I’m not worried. I’m a little mad! I’m mad about being worried time after time. I’m not going to do it this time. I’m tired of the process and I’m tired of the paralyzing fear of cancer gone wild. The scan and the results will not change my today. It will not change my tomorrow. It will not change my amazing family get together coming up the first week of August and it certainly will not change my over the edge experience on August 15th as I rappel over a 14 story to raise money for Gilda’s Club. Scanxiety! Be GONE! You lose today. I win!

Stay tuned for the real story. For now, this is what I’m going with.

24

HEALTH UPDATE: Colds are worse than cancer. Lol. I’ve been a big baby sick with a cold but I’m on the mend. I tested negative for covid earlier this week and now I’m about to find out how my blood is doing these days. Overall, I’ve been weak and sore but that could be my body fighting cancer and a cold. I really can’t complain.

Ramblings….

I made it in the door to the hospital!! The questions process has always been a breeze. No symptoms. No nothing. Not this time! I’ve had a ton of crud in the past week. I’m mostly better now. Ive got my negative covid test results a fingertip away and also my vaccine card in my purse. I must get inside to receive my life saving concoction. I thought about lying. It would be so easy to physically say the word “no”. No symptoms. No nothing. That would not be possible for me emotionally. These are my people. If I’m deemed not safe, I’m not going in.

I’m masked and in the waiting room at the lab. It’s crowded. There is a man two seats away. I can smell stale cigarette smoke. A woman is two seats from him and directly across from me. I notice her eyes scan the room for an alternate seat immediately after the smelly man sits down. It’s a toss up. Is he too close? Is it the smell? She stays put. As do I. Before my vaccination I wouldn’t even be in this room waiting. I’d be outside by the elevators. Germs!!!!! Lol. The lab is way behind. It’s busy.

I see a new face today. She’s so nice! My port sucks. Blood rushes out and then stops. My new friend states that ports are going to drive her nuts today. Well that’s not cool! I’m glad I have insurance and have met my deductible. She is using a ton of syringes to make that blood flow freely again. Swoosh. There it goes. Back in the game. Samples drawn. I forgot to tell her to find the good blood. Fingers crossed. I’ve already negotiated with myself. If any of my results are off, it must certainly be because of my cold. OMG!!! What is that noise?! I’m in a different waiting room now. I’m waiting to see my doctor. Its almost empty so whoever is eating something crunchy, it sounds as loud as a gong. My eyes gravitate to the desk. I see her mask going up and down as she chews. Aww. This pandemic!! Mask snacking. When will it end??!!!

It’s been a whirlwind. I didn’t even have time to stalk my labs. It was old school “hold your breath while doctor reviews on computer screen and try to determine if their reaction is horrified or elated”…. Labs look great! Exhale. Of course they do. I wasn’t worried!!!! Who me??!! Worry??!!Lol!!! I also proudly signed up for a study. Some kind of a molecular tumor type of study. What’s mine is yours my friends! Please figure out how I have so many mutations. If everyone could just get some, maybe they could respond favorably to immunotherapy too!!

I’m waiting again. This time at the chemo treatment area. I’m out by the elevators. The actual waiting room is packed. Too many cancer patients. Too many!!! F cancer!!! I hate this. I was just forcefully seated on the roller coaster. I’m so happy for me. I’m so sick for everyone not as lucky as me. UGH!!!!! Make. It. Stop.

Next up. Treatment. Long wait today but who cares? Amazing people watching! Eyes of sadness. Eyes of hope. Busy eyes. Happy eyes!! I’ve recently started watching Grey’s Anatomy from the beginning. I had never watched it once in my life. I picked it because I thought Melanie told me she was watching it. Turns out she’s watching ER. OOPS. Lol. I knew it was one of the two! Anyways….I saw Dr. Dreamy today here at UW Hospital! Same hair, face and classic shirt collar! Too funny!!

I’m all hooked up now. The miracle concoction is flowing through my port into my body. I can’t feel a thing except for an enormous gratitude for this opportunity to be saved. Today is my 24th treatment. Cheers to 24….thousand….more. Lol.

Sisters Gone Wild

HEALTH UPDATE: Although my usually perfect labs were not perfect today, my wonderful oncologist says I’m good. Waiting for my juice right now. Yessssss!!!

Ramblings….

Spa Day reunion! If anyone can make cancer treatments fun, sister Melanie can! It felt SO good to have her by my side today. Much more than I could ever have imagined. I was on edge as I usually am. She was the distraction I needed. Before I knew it, the buzzer went off and the last few drips of miracle concoction were met with an AWWWWWW because it was almost time to leave! Seriously! Is this life real?

If cancer wasn’t so hideous and out to kill people, I’d wish it on everyone! I’m a broken record but I’m replaying this song again! This day. This time. It was incredible! Time with my sister. Time. Just time being here!! Time that she took to be with me and take the top down on her Jeep for a joy ride on the way home! I’ve lived in this town for 35 years but the Capitol has never looked so freaking exciting and fun as it did today! I was woo hooing out loud out the windows! I’m ALIVE!! My appreciation for these simple things continue to swell.

LAUGH, LOVE, LIVE!

Today we got the band back together!
Sisters Gone WILD!!!!
My beautiful city!

Ramble of all rambles

HEALTH UPDATE: Same. Treatment next week.

Ramblings….

I’ve got spaghetti brain. I cannot pinpoint the topic of this ramble. I’m thinking it will consist of many different topics. It could turn into the ramble of all rambles. I never quite know when I start writing how long it will be. I almost always know the topic I’m reaching for. The situation that inspires me. Today though, I’m going with an inner drive without clear explanation. Let me begin.

I miss my blogging. I know it’s dropped off considerably. My life has just been so ordinary! Although the world today has been anything but ordinary, I’ve adapted quite well. Now that Tom and I are vaccinated we are venturing out a bit more. We still play it safe. One of the happiest changes we’ve made is taking Willow to parks again. Her face. Her smile!! It melts me. So much has changed in the last year and a half. SO MUCH.

I recall quite clearly that when I was so physically sick, the feelings of doom were overwhelming at times. There was nowhere to hide. I’ve had some new minor physical symptoms lately. They are minor and can be explained as things everyone goes through. Things that certainly don’t mean you have cancer! But I already have cancer!! What does this mean for me? It’s spread? It’s growing again? Like my Dad would say, doom and gloom! Lol!! I just had a scan. It was stable. Was it? Is something being missed?

My expectations have been low. I mean seriously low. Since the day I was told I had months, not years, any extra moment on earth would be a bonus. Extra time didn’t need to be perfect. I don’t need details either. Just keep me alive! The summary of my scans are just fine. At what point do I get my head in the game of survival? When do I pay more attention to the fine print on the reports? What have I learned?

I’ve learned that I need to ask questions. Things can be missed. Listen to my body. It’s hard to ask questions though. If they think I’m just simply stable then so be it! But what if I’m not.

I’m fairly certain that all of this paranoia can be understood when referring to my history of self diagnosed hypochondria. There is another component that shouldn’t be overlooked. Time. School is done. Slide one worry away and another is happy to take its place. I know what I need to do. Acceptance. It is my friend. Why can’t I accept that this is the way it is now? Ding ding ding.

This is SO WEIRD! Nearly every single time I write, I experience some type of epiphany. Almost. Every. Time. I know this will sound crazy to most, but for me, I’m yet again learning to understand what the hell is going on in my mind. Up until this moment, I thought my hypochondriac ways were over. I came to the final stage! I was diagnosed with what I feared most! What else would there be? It was a sense of relief to finally get past the constant fear of finding out I have cancer. No more worries about worrying.

Well I’ll be damned! It’s back! Isn’t it ironic? So let me break it down. It started with numbing fear of getting cancer. I get cancer so there is no longer need to worry anymore. One less thing to worry about. I survive. The cycle starts all over. I worry I will no longer be stable.

This is not as dyer as it may sound. Am I concerned for my life? Yes. Do I get scanxiety? Yes! Horribly! BUT. I have been through this before. at least I know now what is on the line. It’s my life. All the same positive thoughts apply and they are: Trust God’s plan. What is meant to be, will be. Fight like hell. Never ever give up.

This ramble was helpful to me. I never know how it will come out, but it does. It’s pretty neat. Once again I feel so lucky to have found a way to figure things out. It’s so consistent!! I’m also realizing that I do need to start therapy again. Lol.