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?
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.
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.
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:
HEALTH UPDATE: Pretty incredible. Broken toe is healed. Condition is stable. I completed my 29th immunotherapy treatment last week. Time flies when you’re having fun!
Holy cow. As my two year anniversary of my cancer diagnosis approaches, I continue to be amazed. I am completely flabbergasted at my life. The changes are plenty. How am I still here to tell this story? It’s like I’m living a dual life. In one, it’s life as a self diagnosed hypochondriac as usual. Total paranoia of death at every turn. I imagine medical drama at least once a day. Worrying but thinking I’m ok. In my reality, the diagnosis is real. As soon as the comfort of good health enters my thoughts, it is interrupted by the recurring scans and treatments. I won’t lie it’s so hard.
If I were to reflect, I would first consider all that I am now compared to who I used to be. I’ve always felt good in my own skin. I’ve not lived a perfect life but I’ve lived it on my own terms. I take responsibility for mistakes along the way. I’m proud of accomplishments and have experienced heartache and love that I never knew could exist. It all prepared me for the worst that cancer has to offer. Nothing could have prepared me for all the good. It sounds ludicrous to place a deadly cancer diagnosis in the best life experiences category, right? I look at my life though, and it has changed me, almost completely.
We recently trucked it out to the woods for a family photo shoot. Capturing the growth of our angel girl has always been important to me. Putting her on stage, viewing her beauty and worth is something I can’t put into words. My own own worth, as a mom, is amplified when I think of all we’ve been through together. Looking at these photos is a big deal to me. This year, a pause. A pause between husband and wife in a field while our angel played with a long lost friend, our photographers daughter. We embraced for a photo but it felt like so much more. My husband. My one and only. We’ve lived a life together with so much pain at times. It’s been hard. We haven’t seen eye to eye on almost everything for a long time. But now, in this moment, I’m feeling our love. It’s the same love that I felt on our wedding day but stronger. We won. We are here, together. I don’t want to ever leave this embrace. This feeling. Ever.
This is where everything becomes complicated. The happier I am in this life, the more I never want to leave. Please Lord, please! I can’t leave!
The struggle is real. I’m stretched between the absolute best times and my mind pulling me towards my mortality. It really makes for one bat shit crazy argument inside my head. Enjoy! Live in the now! But when will it end? What is around the corner? How long do I have? They said “months”. It’s almost been two years. Take what you get. Appreciate. It’s hell not knowing. The longer I’m enjoying, the less time I have left. Right? No? We don’t know. Does anyone know? No.
I have a response for both beliefs. Back and forth. Over and over. Every day. Inside my head. Most days the positive thoughts are in the lead. Ironically, the really good days are when the doubts creep in. The good days are so good, I never want it to end. I’ve had a lot of really good days recently. I need to take it for what it’s worth, enjoying each breath. Pray for me as I struggle to stay in the now.
The now is such a beautiful thing.
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.
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.
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.
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.
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.
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!
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.
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!!
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.
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!