Time for a Changeup

Get ready team!  There’s a changeup. First off, I hope this finds you all well. I know the weather has been wacky. It’s kinda representative of my past couple weeks and today. 

But first, grab your popcorn and sit in the stands cause this changeup on the field includes a new team member. Cancer Crushers now has a new radiation oncologist! Yes, you heard right. Radiation is now part of my treatment… and not just radiation to one spot… to my whole brain! Womp! Womp!

Let’s back track a bit to catch you up. I completed cycle two of my chemo cocktail and wasn’t feeling great. I still have some side effects and no appetite and not much taste. I alerted my oncology nurse who set me up for an IV infusion of fluids. I am not a fan of going to oncology triage. It usually means I’ll be admitted. However, I knew I was not feeling good and needed fluids. Listen to your body. Always listen to your body and be your own advocate… even if you don’t want to. Good news! I wasn’t admitted and the IV infusion helped. However, I had severe anxiety during the whole few hour process and that is never very fun. My oncology team took me off my chemo cocktail. I’m still not feeling great but they wanted my GI system to recover. So did I. It was a mess.

Last week I had a brain MRI… a follow up to my gamma knife procedure back in September. It was a mixed bag of news. The good news is the original tumor stayed the same and the tiny other 2 original lesions couldn’t be seen. Yay! The bad news is that the 7 existing ones got a tiny larger and there were at least 8 more NEW small lesions. Good grief! Not the best news but not the worst. So that brings me to today… where I’m getting ready to start whole brain radiation. My mask is made and my scan is ready for mapping. To say I’m not freaked out would be a lie. I am. I mean who wouldn’t be. I have to take Alzheimer’s meds while undergoing the radiation! I mean who thinks about memory loss and dementia at 45?! Not very many people I hope. I am hopeful the meds will delay or prevent any cognitive issues. I’m ready to pick up the bat and start swinging again. Round another base and get waved onto the next base.

That brings me to this upcoming week. I have four hours of scans for the rest of my body. Chemo will be changing and these scans will show if there’s any progression or if things are stable. Whatever the results reveal can alter your path in a monumental way. Just know that I will keep swinging and round the bases till I make it home.

When Taste Buds Turn into Taste Duds

Food. It’s something we all eat. Some of us structure our meals around work. Others of us cook weekly meals or use Blue Apron. It’s gives us fuel and sometimes joy… but what if you weren’t able to taste those delicious meals. I’m one of hundreds, if not thousands, of people battling cancer who have lost their ability to taste. It happened in 2016 but not like this. This time around it’s just gone… and has been since September. I watch as my parents eat and enjoy lunch and see them watch me with worry as I nibble, like a mouse, on what’s on my plate. “Eat toast and rice,” people suggest. It tastes like wet sand and is hard to swallow! Most of the food I eat tastes like cardboard or just bad. I guess I do taste… something. LOL Smoothies I’m just too tired to make right now. I’m more of an open the bottle and drink kinda gal. 

I’ve lost a good amount of weight and eating and drinking fluids is important. It’s just a struggle bus for me. I have no appetite and that doesn’t help either. It’s just hard to do what comes so naturally for most people… eat. Tomato soup is forever ruined for me. I threw it up a few weeks ago and just can’t imagine eating it again. The lack of taste has just gotten worse with this new, every single day, chemo cocktail. Hopefully, once we figure out adjustments I’ll do better with food. Who knows. That’s what the cancer coaster is like. One day you can feel a bit “normal” and the next like an alien who fell out of his space ship.

I guess the moral of this little blog entry is to enjoy your food. You never know when your taste buds will turn into taste duds.

The Gifts

 

Happy 2021 everyone! It’s been a bit… and there’s a reason for that. I’ve been in the hospital a good portion of January. It truly sucked. As my oncologist bluntly put it, “You look like crap and feel like crap.” He then admitted me to the hospital for the second time this year. The good news is that I am feeling better and recovering from the infection that landed me there. It’s an infection I wouldn’t wish on anyone. Yuck!

 

I haven’t been on my chemo cocktail due to the infection and will learn what is next this week. Will we switch chemo? Will we just lessen the dose of the daily chemo I’d completed one cycle of? I feel it'll be the lesser dose. I’ll keep you posted. The cancer coaster continues. I'm buckled in.

 

Speaking of this week… it’s my Birthday week (1/27)! What a 44^th year it has been! I am grateful though. Everyone keeps asking, “What do you want for your Birthday?” I keep responding, “Nothing. I just want my health.” Truly though, my gifts this year are all of you. Yes. You. Many of you have reached out via Messenger, text, Facebook and via mail. Y’all know I love my snail mail! You are all my gifts. Every message brightens my day. The “check-ins” and random acts of kindness illuminate my dark days. I am grateful. Thank you. I’m truly grateful for my parents who have been amazing during this journey. It hasn’t been easy on them and they are truly the unsung heroes of this battle. The battle is far from over. I’m getting my body ready for the next part. Cancer may kick my butt sometimes but it has nothing on me.

Goodbye 2020!

Goodbye 2020! What a year it has been for all of us. We made it though! We are almost there. Congratulations! Let’s give each other virtual high-fives.

We are probably all wondering if the hardships of this year will spill into the new year. 2020 has been filled with a lot of uncertainty and darkness. Many questions are still unanswered for us. Will we achieve our goals? Will we ever return to some kind of “normal?” What will happen to this planet and its’ people? Is the future as dark as what it has been? I say… there is light. 

Whenever you fall into the darkness don’t ever forget what you are capable of. We are all survivors. We are all examples of light to one another. If we can’t support one another and inspire each other to be better people… to choose hope instead of giving into hopelessness… then we’ve lost sight of the light. I am guilty of that. We can each be a source of hope and commit to keeping the flame lit. We can be an example to others who've given up and turned away from the light and are in the dark. 

The new year comes with a new brightness. Hold onto it. Fill yourselves with the possibility of a future that's full of love, light and kindness. 2021 is full of possibility. A new year.  A new chance. A new beginning that so many people won’t get to see due to the Coronavirus. Help illuminate 2021 in honor of those who light up the night sky as the stars they now are… shining their spirits upon the world. 

So, raise your coffee… water… cocktail… or whatever you may be drinking at this very moment. Cheers yourself! Cheers to a New Year! Cheers to the light!

New Week. New Cocktail.

Happy December y’all! Can you believe ’tis the holiday season and it’s nearly over? I hope you are finding the brightness among the darkness of the changes due to the Coronavirus.

I know I’m trying to find the light after what’s been a coo coo for cocoa puffs week. As I sit here in bed… typing this… I am thankful to be in my home and having tea with some candles lit. It’s the first time I’ve been “still” all week. As you know, I was rounding the bases in terms of chemo. My October scans came back “good.” They showed mostly shrinkage and containment. I’d been excited and hopeful to add on cycles 7/8 of chemo and say goodbye to chemo and its’ craptastic side effects. Fast forward to December 11th and this past week. The days have been full of some work… but many emails, phone calls and trips to the hospital for tests. Long story short is that my scan results of my brain and body are back. To say the results were shocking would be an understatement. They still haven’t really set in yet.

You all have been cheering me on from the stands as I’ve been rounding the bases of treatment. Well, I am being held on third base. It looks like home base will have to wait. 

The good news is no cancer in my bone! Yay! More good news is the gamma knife worked and my brain tumor shrank! Yay! The bad news… I have 8 new and tiny lesions that are too small to do anything with in terms of gamma knife. In terms of lymph nodes, breast and lungs… I’ll just say it was a complete 360. The scan showed progression. Boo! In other words, some new spots and growth. This was no what anyone expected. I always knew this was a possibility. However, I just didn’t think this first line of defense would fail so fast. 

I’m starting my second line of defense this week. I’ll continue with one of my targeted therapy infusions. It’s still every three weeks at the hospital. However, I’ll be dumping the first kind of chemo and the other targeted therapy infusion for …. drum roll…. two other treatments. Both are pills and one is chemo. Chemo will be 6 pills daily for 14 days then seven days off. The other is a daily pill that is a new targeted therapy.  My heart sank when hearing this. I thought my chemo days were nearly done. To say I was overwhelmed with this news is an understatement. The idea of monitoring my side effects more closely and timing out pills and meals is just “meh.” Also, starting a new chemo cocktail is always scary. You don’t know how you'll react and what side effects you'll get. You can read all the comments on support groups you want, etc… but everyone reacts differently. I’m also still coming off my original chemo cocktail. I’m not giving myself a break. I just want to keep doing my best to crush this cancer.

At the end of this not great week… I am thankful though. I’m grateful for my health insurance. I am grateful for my parents who have been on this emotional roller coaster with me. I am grateful for all of you cheering me on and showing your support. Team Cancer Crushers rock! I’m holding at third base right now but will slide into home base at some point. For now I’m taking off my helmet and going back to the amusement park. Gotta stop for some popcorn before I see what kind of roller coaster this new cocktail puts me on. Maybe the new cocktail will just put me on the Tilt-A-Whirl… but first popcorn. 

Dear Warriors and Thrivers...

Dear fellow Warriors and Thrivers,

It’s okay. It’s okay to mourn the life you had before cancer. 

Cancer sucks in general… but cancer during COVID really sucks.

Before moving back to Chicago I was excited to return home, start an exciting new job, reconnect with childhood friends, go up to Wisconsin to reunite with other friends and make new ones. I was also looking forward to Door County in the Autumn. COVID took my experiences, and yours, away… for now. We will reclaim our lives bit by bit. It may take longer then expected, but every day let's vow to do something to reclaim a bit of “normal.” For me, this particular day, it was a short stroll.

I went for a walk and scowled at people not wearing masks. I yelled internally, “Don’t you know how hard it is for me to get out for a walk! You’re taking your life, and others, for granted you selfish humans!” It’s hard for people who haven’t gone through chemo to truly understand what it feels like to have this poison run through your veins. You love it and you hate it. It’s going “Pew! Pew! Pew!” to your tumors so you cheer it on. However, it’s legit burning your body… healthy cells as well. The 10 minute walk took a lot of effort and I was in pain after.

My message to all you Thrivers and Warriors is simple. Keep going! It’s hard to keep living life when someone’s lack of respect for your own is always weighing on you. Health is the number one gift. I realized that when I first fought cancer in 2016. People take their health for granted. I’ve been guilty of that too. You’d think COVID would awaken the world to how precious good health is. I think some people are still asleep. While things won’t ever be the same due to the Coronavirus… we all have to adjust to the new “normal.”

To all of you who have your health this next message is for you. Please hear me. I understand you’re finding it difficult to accept your new “normal” too. Thanksgiving is upon us. It is my favorite holiday. No matter how much my extended family and I would love to get together… we are not. Pictures of packed airports and stories of people planning traditional, large, Thanksgiving gatherings are popping up on social media. Let’s all do what we can this holiday season so we can have large gatherings next year. Stay at home. Zoom together. Yes, I know your new normal sucks too! I am sorry for that. However, how much more will it suck if we have to do this again next year. How much will it suck if your Thanksgiving plans get you sick, your loved ones sick or complete strangers sick… or worse cause their death. It will suck. So let’s just suck it up and stay home. 

Sincerely,

Jessica

Find the Fantastic

Happy November everyone! It’s National Gratitude Month! You can thank “Alexa” for that little tidbit.

It’s been a few weeks since I last checked in. I do apologize. I just haven’t been feeling fab. At last check… it was scan time and I was going in for imaging to see if the chemo cocktail is working. They test after Cycle 3. I legit had scanxiety and drove my team coo coo for cocoa puffs checking in for results. I really wanted them before Cycle 4 and before the weekend. Pretty much 48 hours. So something to be grateful for during this National Gratitude Month… scans came back good! Nodules, lymph nodes and tumor either remained the same or shrunk a tiny bit (brain tumor scan is in December). No further cancer had spread! I burst into tears as I read the results out loud to my parents. It had been a stressful week. Besides the scans, I had been extremely irritable. I had started acupuncture in hopes of finding a new way to deal with the side effects of chemo. I had come back from a session just very irritable. If you know me, you know I’m not easily irritable. However, between the chemo and steroids… lack of taste and impending scans… I was a bit of a grouch. I’ve been a bit more stable, in terms of emotions, since then. Cycle 5 is around the corner. After Cycle 6 I’ll have more scans and possibly more chemo. 

In the meantime, I’ve been working from home when I can. Speaking of which… I realized it’ll be the second consecutive Presidential election I’ll be undergoing cancer treatment during. In 2016 I voted before chemo. Weird, huh?! I’m also a bit sad I’ll be missing another Presidential election at work. Cancer kinda crushed that experience. However, there ARE things to be grateful for. 

1. Zen Time I’ve been trying to zen out in the morning before starting my day and getting out of bed. I’m grateful for the influencers on YouTube that start my day off in a “cozy and quiet” way.
2. My Cozy Bed I am grateful I’m in my bed and not a hospital bed. While I may not be healthy, I am mobile and Coronavirus free.
3. My Family and Friends for which are always there for me and cheering me on. You are part of this journey and I am grateful for all of you… especially my parents.
4. Work Thousands are unemployed right now or furloughed. While I may not be there physically, I am grateful for my job and my work family. They have allowed me to both focus on my health and be a contributive part of the team.
5. Good Scans I am grateful for the scans to come back as good as possible. I know I have many, many more scans ahead of me. They may not always come back “good.” So, I am grateful that my treatment remains the same and nothing has spread. 

I’m sure there are things things you are grateful for as well. It’s been a challenging year for us all. Take a moment to think of one thing you are thankful for in your life… at this very moment. Carry that with you throughout the day/night. While things are uncertain, that one thing you’ve thought of IS certain. Every leaf is a flower. Every storm has a rainbow. You may not see it but it is there. Find the fantastic.