It's Been Rough

Hi everyone! It’s been a bit since I posted but honestly, it’s been a rough 2022 and the energy is just not what it used to be. I started that new chemo back in February. I believe that was the last blog post. Turns out it didn’t work so I start a new chemo on Monday. I am hopeful. 

To say I was disappointed that we haven’t found a treatment that stabilizes and stops the spread of this cancer is an understatement. However, I am hopeful that this new chemo will be the one that sticks. The past few weeks have been rough. Between work, the hospital and realizing that I need to start a new chemo has been a lot. I legit believed that even though the scans showed some growth and new lesions in the liver that we’d be sticking with the plan. The cancer coaster is full of loops and turns. You just need to hold on and roll with the flow. I had Gamma Knife Surgery this week. I had it in 2020 but this time was different. I’m unsure why, but it was. I went in for the prep brain scan Monday so my team could figure out the game plan. Tuesday was my procedure. The sweet nurses made my mask. I just laid there thinking, “Here we go again.” It’s a tight, fitted green mask they bolt you to the table with. The mask ensures you don’t move and protects you from the radiation zapping the lesions. Once the mask was made it was time. It was 3 hours (I think). It was awful. I just kept thinking “Breathe. You Got this. Zap! Zap! Zap! those lesions away.” I just felt suffocated. My mouth was dry like the Sahara. The mask hurt. It felt like it was crushing my face and nose. My head was pounding like I had a migraine. I had to ring for help. I usually power through scans and procedures but I couldn’t this time. They pulled me out for a quick break. One nurse gave me some water while another put a hot towel around my neck. After 5 minutes the nurse asked, “Are you ready to resume?” I took a deep breath and nodded as I laid back down and they bolted my head in. The one positive is that I didn’t cough once! Don’t get me started on my debilitating cough fits. However, it was a big concern for me with this procedure and a goal of mine was not to cough during it. I remember the second half of the treatment I buzzed to see how much time was left at last three times. I just wanted out. I was just miserable but just kept saying “You got this! We’re zapping those lesions like in an Atari video game. Just breathe.” I can’t remember the rest of the night but do remember my parents saying I looked like crap and was out of it. I was wheeled out of the hospital and into the car. Grateful that it was over. Grateful that I had my parents there. Grateful that I was able to have the Gamma Knife Surgery. Grateful to be going home. My mom said the mask had made imprinted holes on my face it was that tight. I put on my PJs and logged onto my Portal and noticed there was a Day 2 of Gamma Knife Surgery for Wednesday. I was a mess. Even though I knew this was a possibility I just couldn’t believe it wasn't over. I had to to go back. They had to split the procedure into two days. I cried and pulled myself together and said, “Well it can’t get any worse.”

Wednesday came and I mentally prepared myself. I did some meditation, showered and was ready. Day 2 was better… minus the fact I was hallucinating. Maybe I wasn't. Who knows? I’m unsure if it was the anxiety meds or what. While the mask wasn’t killing me… I was now seeing dead relatives. My grandma Madeline held my hand. Some other relatives stopped by. Someone put some purple beads arounds my “casket.” I think all of these appearances were meant to comfort me and remind me I’m not alone... that I have angels looking out for me. It freaked me out a bit. I sobbed under my mask, which in turn had my back spasming on the cold, metal table. I was just like “Get me out of here!” I wasn’t wheeled out to the car this time but I was clearly shaken. I was crying and just frustrated. It was over though. I had survived. Now it was time to try and rest and recover. I just couldn’t though. I’m on steroids on top of all the other meds I take for my cancer side effects. The steroids are to control any swelling of the brain. I dozed off for hours but was too weak to move off the couch to go into bed. Not good. I was, and still am, emotionally and physically drained. 

Saturday rolled around and acupuncture was a much needed treatment. I laid on the table grateful for some TLC. I listened to the calming music during treatment and reminded myself, “You did it! Thank you body! Look at what you did.” I came home feeling good and then, hours later, I just didn’t. The nausea, dizziness and headaches kicked in. It was just frustrating. Today is Mother’s Day. I still feel the same. Still dozing off. Still fatigued. Still nauseous. Still dizzy. I was able to celebrate Mother’s Day though. Tomorrow, Monday,  I start my new chemo. It’s going to be a long day. I don’t know how my body will react but I’m hopeful. The cancer coaster rolls on. I know that one day a treatment will work. I just keep going grateful for a new option. Grateful for the support around me. Grateful for being alive. So, I'm okay. I just am having a rough time. There's nothing wrong with that. Accepting how I feel and trying to be kind to myself is something I'm working on. "Just keep going Jess," I tell myself. "You got this. You're buckled in ready for the next loop. Just hang in there." I am! 

It's Okay. It's Alright.

It’s the New Year and I do apologize for not writing or updating. 2022 has been a challenge to say the least. The new chemo (Two weeks on one week off) was kinda like a jack-in-the-box or a see-saw. One day you’re up… the next you’re down. One hour you’re up… the next you’re down. One weekend I got vertigo unexpectedly. I had been feeling fine after a rough couple of days of not much eating and not functioning. I had done laundry, some light cleaning and then boom! The room began to drop like a see-saw and spin like a top. The woman who cleans my apartment knocked on my door and I just burst into tears. It’s the first time she saw me crying. She was my angel that day. 

January was my Birthday month and I found it a struggle to just get into the mood. It was just a rough month as my body tried to figure out the new chemo and schedule. February hasn’t been any easier. I took scans to see if the chemo was working. It wasn’t. My once clear brain scan was lit up again. The positive is that the 7 lesions are teeny tiny! They’re so tiny my neuro oncologist is like let’s wait and see and in the meantime focus on your lungs and the rest of your body. 

The cancer in my bones are stable but the rest of my body is not. Scans showed small increases in the lesions in my breasts, lymph nodes and lung.The cough I have… no comment. It’s awful. It’s random. It’s me gasping for air at times. It’s me coughing so hard I gag. It’s not covid. It’s not viral. It’s not pneumonia. It’s likely the cancer but they don’t know. I’ve tried three different prescription cough meds, two inhalers, Claritin, lozenges and tesla pearls. I see my pulmonologist this upcoming week. 

This past week is over! Thank goodness. It was hard but victorious. Hard because it was a lot of hospital time. Hard because the unstable scans meant changing chemo… again. It’s my sixth chemo in less then two years. I am grateful because there are still options and because six is my lucky number. I am grateful because they were able to get insurance approval that same day. It meant I could continue to fight with no break. It was a rollercoaster Monday. My dad and I sat in the oncologist’s office as he showed us my images. It showed the mystery in my lung... the lit up spots of white we are trying to dim... the temple this cancer is trying to burn down. This new chemo cocktail is weekly. There is no break. There is hope. One thing I do hope is that I don’t have the crazy side effect I experienced post infusion. Luckily I was still in the chair. However, it really really was painful and sucked. The side effect means I get to say “Hello” again to my old friend dexamethasone. It’s not my favorited steroid. It keeps me up and hot flashing for 24 hours. However, if it prevents that awful side effect from coming back… I’ll take it. 

I called this week victorious too. I worked more days then I thought I’d be able to. I also was able to eat more. I saw the goodness in so many people. I mentioned my cleaning lady and how she cared for me. There are so many of you who reach out and just check in… brightening my day and offering support, food and serving up lots of love. There was the nurse who saw me waiting in a cold hallway and randomly offered me a warm blanket and pillow. She told me to just leave them on the chair when I left. I left a “Thank You” note. It touched her. I saw her later and she gave me a big hug. You never know what small thing you do will change a person’s day or mental well-being. 

Speaking of which… I’m doing my hardest to be more open about how I’m feeling. I’m one of those people who is like, “I got this!” and slap a smile on my face to the outside world. I’m learning it’s okay to have those days where you just tell people, “I’m not okay. Today sucks but I know tomorrow is a new day.” It’s also okay to cry. I often hold back my tears and just breathe threw the sadness I’m feeling. Why though? Cry therapy is good! Cry away! I used to apologize for crying… knowing it made others feel uncomfortable or sad. People don’t cry because they are weak. Some may feel it’s a sign of weakness. It’s not. People cry because they have been strong too long.The dam broke and the tears flow… releasing the pressure of feeling the need to be “ok.” As I posted on social media earlier this week, “Realize if you didn’t get everything done or right it’s ok. It’s alright. You’re doing your best.” That's all we can ask no matter where we are on this journey in life. To do our best. To keep going. Sending love and light to you all.

New Year. New Chapter.

 It’s 6am on the Sunday after Christmas. I’m listening to a remaining Christmas “Yule Log” channel. What used to be, at least six channels, is now down to a few. Where did December go? I mean this month flew by. Right? There’s only week left in 2021! I have my “To Do” list for today but taking a moment to reflect on this past year. It’s been a rough one for many of us… but together… we made it through! 

My 2021 list:

Work

Hospitalized

Scans

Whole Brain Radiation

New Chemo

Bronchoscopy

Lung Biopsy

New Chemo

New Chemo

Holiday Cards

Baked

Snuck in a little fun

Did laundry

Blogged

Worked out… mildly

As I look back at all I’ve been though… 2021 brought it. I brought it too though! I still managed to work. I still got my holiday cards out. I still sent smiles. I still blogged. When I look back… I went through a lot and I did a lot. I sometimes beat myself up for what I’m not able to do. The days I’m unable to work (which, thankfully, aren’t too many) riddle me with guilt. The days I can’t move from the bed or couch shock me. I miss frolicking with friends… the boozy brunches full of bloodies… the travel with friends or to see friends. I miss the daily grind. I need to remind myself those times will return to some extent. That’s what I fight for every day. My “new normal” is ever-evolving. We all are navigating an ever-evolving new normal. The pandemic takes us on a rollercoaster every month. Remember, we are all on the ride together. We are buckled up. Speaking of buckling up and rollercoasters… buckle up for this quick health update. 

I had scans this month. It was my first set of scans with the new chemo. I was hopeful. My brain scan had come back great! I wasn’t feeling that bad. Nothing crazy going on. So, my fingers and toes were crossed! Nope. Scans came back. The chemo wasn’t working. So, I started a new more aggressive chemo this past Christmas week. It’s two weeks on/one week off. Previously, it was infusion every three weeks. This new schedule is new for me but I am hopeful. I am grateful there are still options. I am grateful.

I often talk about gratitude. I’m grateful for all of you. I’m grateful for my friends and family… especially my parents who are the unsung heroes of my journey. Every text, card, message, gift and prayer are all things I am grateful for. Those are all gifts to me. They give me hope during moments I feel hopeless. They bring me light in moments of darkness. They are everything to me. 

As we begin our final week of 2021 I want you to grab a glass/mug of whatever you want. I’m grabbing my coffee. Let’s toast to 2022! My wish for you is a happy, hopeful and healthy New Year! Do what brings you joy. Don’t sweat the small stuff. Spread joy where you can. Do your best. Know and accept that that is enough. I toast to your health. I wish for you love and peace. May every night end… and may every day start… with a grateful prayer and a hopeful heart. Take a moment to look around you. You are alive! The gifts that you see.The gifts you can’t see. Don’t let them slip away in the hustle of a busy day. Breathe it all in. Don’t focus on what others are doing. It matters what you are doing. So here’s to 2022 and all you hope to do. 

77/23

 .77 miles and 23 minutes. That may not mean much to you but to me it means the world. Why? This once very active girl hit the gym for the first time since leaving NYC! I hit the treadmill… at a really…. slow… pace. As I listened to my songs on shuffle I looked around and teared up for a hot second. I may not be the woman running quickly on the treadmill in the corner in front of me. I may not be the guy on the Peloton cycling to the beat. I may not be the old me who would be on the elliptical doing an Aaptive workout. What I am is the new me. An ever changing me that ebbs and flows with how my body feels. A new me that is sometimes hard to accept. I don’t know what inspired me to hit the gym. I was avoiding it due to the Coronavirus. That’s the last thing I need to get. However, it’s getting cold in the Windy City and the whipping wind outside whispered, “Do it Jess! Go to the gym and get a piece of you back.” You know what? That’s exactly what I did. As I walked to “30/90” from “Tick, Tick… BOOM!” I reclaimed a piece of me that’s been missing on this cancer journey. A physically active me. A Jess at the gym! For a brief moment I felt a little like my old self mixed in with the new me. It wasn’t the miles that mattered but the moment and the movement forward that did. I took a step forward for those who aren’t physically able to. I took a step forward for the future me. I took a step forward and reminded myself to keep going. 

77/23. Maybe, one day, someone can write a song about those numbers and turn it into a Broadway musical. 

A Day of Thanks

It’s Thanksgiving and I just want to wish you all a happy and healthy holiday. I haven’t written a blog as there’s not much to update you on… yet. The end of this month and December is stuffed with chemo, scans and appointments. Today, I am focused on gobbling up food and making new memories.

I am working and I am grateful for that. The co-workers, family and friends who have supported me via texts, gifts and messages. I am grateful for all of you. Every Facebook comment, card, delivered meal and “check-in” text are all things I cherish and am thankful for. Every… single… one. Every... single... day.

I am just grateful to be here today. Alive! God has granted me another Thanksgiving. I am not in the hospital. I am not puking into a toilet. I am not bedridden. I am just grateful. I’m looking forward to spending part of the day with my parents. Without them and their never-ending love and support I’d be nothing. They visit me daily. They drive me to appointments (my vision still stinks). They feed me and shop for me. They are unsung heroes on this journey. 

This journey is one you all make bearable. I wish you and your loved ones a Happy Thanksgiving! I’m sending love and light to those who are missing loved ones today. I know the holidays can be tough. Be grateful for the memories of those angels watching us today. They’re smiling down upon us and here in spirit.

Day 31: "Dear MBC"

 October 31, 2021

Dear MBC,

It’s Halloween! That means my month of writing to you is over. It’s been a good day… but right now you have my stomach in knots and my head hurting. I’m making myself some “Love” tea. I haven’t had it in forever! Tea always makes everything better. Ok, I just took a sip and my teeth hurt. #Weird. 

For those of you who have been reading my diary… I hope it has given you a small glimpse into what living with metastatic breast cancer is like. Some days are good. Some days are bad. Some days are up-and-down. MBC teaches you to roll with the punches. To cut yourself some slack. To listen to your body even when you don’t want to. MBC teaches you to be grateful for the little things and celebrate even the smallest victories. It teaches you to embrace the sucky moments and cry it out… but to keep moving forward. Accept. Adapt. Appreciate.

I hope you’ve recognized some of yourselves in my posts. I hope they’ve brought you light in the darkness… even through the fog. I hope they’ve given you a different perspective from whatever bench, sofa or chair you’re sitting on. That you realize you have a choice in what you see in life. Do you choose to see the joy or do you just see the bad? Accept. Adapt. Appreciate… and keep going knowing that you matter. That your story matters. That you are still growing and learning.

I’ve learned “God gives his toughest battles to his strongest soldiers,” so the saying goes. Well give me my helmet, my bat and my Cancer Crusher jersey. I’m ready for battle. I may get wounded and sidelined but this soldier will always dust herself off and march on.

Till tomorrow MBC.

Sincerely,

Jessica

P.S. The “Love” tea is helping a little. So take that! 

Day 30: "Dear MBC"

 October 30, 2021

Dear MBC,

It’s been a few days. I went to my parents for some self-care appointments. I worked… minus one day where the Wi-Fi decided not to work. I tried though! It’s always nice to escape the city and venture to the burbs. I saw some cute little ghosts and goblins trick-or-treating today! 

I was feeling pretty spooktacular Wednesday and Thursday. I was just really fatigued. Friday was not a treat. You played a trick on me MBC! I felt fine all morning. Around 11:30 I was in pain. You did this to me once before. I feel fine and then move and am in this crazy constant pain. It’s like if you put a thick rubber band around my chest and upper back and then take a knife and stab me… kinda like a voodoo doll. I mean it’s not fun. The pain makes breathing hard. It just hurts. I swear it’s skeletal pain but I’m no doctor. Maybe I should be a skeleton for Halloween! LOL Anyway, I took two extra strength Tylenol and after a few hours I felt better. Thank goodness!

I feel much better today. It’s now Saturday night. I’m back at my place. I tried eating three different meals for dinner. They all tasted awful. I had an Ensure. It was ghoul-licious. Ghostbusters “Walk The Moon” is playing on Pandora. I watched some reality tv. All is good.

MBC... you’re kinda like a ghost. You’re always hovering about. Sometimes you are friendly and don’t bug me too much. Sometimes you're like “BOO!” and sneak some crazy symptom on me… like yesterday! I try to be like,“I ain’t afraid a no ghost,” but sometimes you do scare me. Don’t worry, I just do the monster mash on you and squash the symptom you throw at me the best I can. 

Have a wicked good night! 

Sincerely,

Jessica