Day 26: "Dear MBC"

 October 26, 2021

Dear MBC,

It’s Tuesday but it feels like Thursday. I’m not sure why. I’m a bit fatigued MBC. I exude a lot of energy but I’m really just tired. I’m still not sleeping too well at night. I’m still waking up in hot sweats. I worked this morning and treated myself to a nutella latte AFTER I had my own coffee at home. I also picked up some medication and had an appointment. 

Meantime, all the food I’ve tried to eat tastes not great but not awful. The butternut squash soup I loved the other day was nastified today. Same goes with my hummus and veggies and Eggos. The egg salad I loved over the weekend… not so good today. Nothing tastes normal.

What was normal today? For a brief moment I felt like my old self. I felt like my pre-cancer self. It was a fleeting moment. I had my nutella latte in my hand was walking to get my prescription. I felt good! I felt energized. I felt normal. It was really weird! Then it was gone. It’s a moment I’m grateful for today. I keep trying to figure out what sparked that feeling. I just don’t know. Maybe it was because for the first time in a year I wasn’t wearing sneakers. I had put on my knee high black boots! I was excited they fit because I’ve lost so much weight. I didn’t know if my feet had shrunk too! LOL The boots fit though and maybe that’s what made me feel normal. 

Speaking of my weight… don’t worry I am eating. I am currently munching on the veggies and hummus that taste weird. I also have some cheese handy. Oh wait… it’s been 10 minutes and I’m having some BarkThins. See! I’m eating.

I’m finding if I sit with my legs crossed my joints are really sore. That’s just a random thing I’ve noticed today. 

That’s all I have for now. You’ve been pretty decent to me MBC so far this week. I can’t really complain. Till tomorrow.

Sincerely,

Jessica

Day 24: "Dear MBC"

 October 24, 2021

Dear MBC,

We always have the choice—to complain or to count our blessings. A fellow thriver once said that. Yesterday, as I Raced for the Cure I counted my blessings and my steps. Each step represented a step forward. A step towards finding a cure. A step towards more research. A step into the future. 

I could have chosen to complain about the map I created for my walk. It was a virtual walk. It took me onto Michigan Avenue and through the hospital campus. I didn’t complain. Instead, with each step, I chose to count my blessings. Let me take those of you reading this with me. So many of you cheered me on!

Lace up your sneakers. We're going for a walk. 

The walk.

I pass a McDonald’s and thank Ronald for the milkshakes he served me when they were all that I could eat. Vanilla. I turn left and continue forward. I pass hospital staff probably returning to their cars after their shifts. I smile at them. They could be coming from Prentice Women’s Hospital. I purposely stop there and take a picture. It’s where my oncology team is and where I get my chemo. I silently thank my team for always walking besides me on this journey. Sometimes, they’re one step ahead. They never walk behind me. I continue on. As I walk towards Michigan Avenue I pause. I’m listening to music. I forgot to tell y’all that! I’ve listened to songs such as “Fight Song,” “You’ll Be Back,” “Go West,” and “Mi Gente.” My steps are speedy. I slow down. I turn left towards the fancy Reserve Starbucks that always baffles me with its’ long line. I don’t want to wait in the cold so I cross back over Michigan Avenue to stop at a regular Starbucks. Also, my neuropathy is kicking in and I’m a bit chilly. I figure the impromptu pit stop will help. In hindsight… that Starbucks is right next to the building where I had whole brain radiation and gamma knife surgery. I leave Starbucks with my hot chocolate. Fitting, as a Christmas song pops up on my playlist. It’s “Jingle Bell Rock” by The Brian Setzer Orchestra. As I walk down the block… drinking my cocoa… I think about when I saw the band perform in Palm Springs. I had produced the 6pm news that day. I remembered my drive to the concert and how much fun I had that warm desert night. As I reminisce a burst of cold wind hits my face and jerks me out of the warm past and into the chilly present. I’m standing in front of the Emergency Room. There are pillars outside the ER. Each pillar has a pink ribbon on it. I pause and snap a picture. I think, “Why are there just pink ribbons on these pillars?” You are missing MBC. The metastatic breast cancer ribbon is not represented. “Are we forgotten,” I question? I think of the tri-colored ribbon I have on my shirt and look at the emergency room sign. MBC… you brought me here multiple times. Each time I was a shell of a person. You had me feeling like crap! One time I had to be wheeled in. I could barely walk… but the wheelchair moved me forward into the ER and into the hospital. Always forward. Today, I stand in front of those doors grateful for that care and grateful that I survived. Not everyone leaves the hospital. I look up to the sky at the angels I can’t see but know are there. I take some sips of my cocoa and continue forward. I want to walk more but my body is starting to tell me it’s time to go home. My neuropathy is getting worse and now my lower back hurts. I have to listen to you MBC. I know if I don’t I’ll regret it. So… with each step to my apartment I count my blessings. My parents, my friends, my medical team, my ability to be mobile, my work…. my life. Those are all blessings. It’s a blessing that I’m able to do the virtual Walk for the Cure. As I enter my building and ride the elevator up I give myself a silent round of applause. I step off the elevator and into my apartment… moving forward. Always forward. #KeepGoing

Today, I’m resting. I’m sleeping. I’m stretching. Just because I’m resting doesn’t mean I’ve stop moving forward. Tomorrow I’ll take more strides. Until then… good night MBC.

Sincerely,

Jessica

Day 22: "Dear MBC"

 October 22, 2021

Dear MBC,

It’s Friyay!!!!! Thank goodness. You just make me sooooo fatigued MBC. I’m not sleeping well and when I do sleep I don’t feel rested after. I woke up not feeling great but pushed myself to work anyway. Acupuncture was good but my head just hurts, my eyes just blurry/tired and my body fatigued. I have the virtual Walk for the Cure tomorrow and while opening ceremonies are at 9am I plan to start walking earlier. My goal … a one mile walk. I was going to walk by the lakefront but it’s supposed to be a bit chilly tomorrow and the wind may be bad. I’m concocting a walk map in my mind. I think I may do a rectangle that includes the Northwestern Hospital campus and maybe the Riverwalk. We will see how I’m feeling. I don’t have much else to say today except I am just fatigued and can’t wait to snuggle under my covers. 

Till tomorrow MBC.

Sincerely,

Jessica

Day 21: "Dear MBC"

October 21, 2021

Dear MBC,

I didn’t have much to say yesterday so I gave myself the night off. I didn’t feel guilty about it. In the past I might have. I do what I'm able and that’s fine by me. Fatigue and constipation is really starting to hit me. You haven’t knocked me out. You just have me moving like a blurry-eyed sloth. I’ve been working. I’ve been eating a little. I’ve been moving around the apartment. I’m still standing MBC! Honestly though… the fatigue is just annoying. My eyes are half shut as I type this. I have NewsNation on but reading the banners and scroll is difficult. I used my eye drops but they’re not helping too much. These are Rx drops too! They cost $100. That’s another thing MBC… you are expensive. I honestly don’t know how those who can’t afford health insurance, or don’t have access to it, handle the added financial stress. It can be financially stressful with insurance. 

You are relentless MBC. Fellow MBC thrivers I follow on social media are struggling as a few learned their scans show progression… their treatment failing them. Some are switching to a new chemo and others are re-starting. While we all want to find new treatments to prolong our lives and improve our quality of life… ultimately it’s a cure to crush you we all pray and hope for. From extra weight to lost lb’s… from foul tasting food…to migraines. From fatigue to bone pain… to vomiting and nausea… you try to take over our bodies. Sometimes you instill fear in us but we will always continue to fight. 

Till tomorrow MBC.

Sincerely,

Jessica

Day 19: "Dear MBC"

October 19, 2021

Dear MBC,

I’m feeling a bit better today, so thank you. I crashed in bed last night after I wrote to you. I was up early for work and felt good enough to work. I then had to deal with health insurance and was off to acupuncture. I went for a short walk and did eat a tiny bit! Yay! However, now I feel really sick and vomity so maybe I ate too much? I just had some veggies and hummus and some dip and chips. Both tasted decently and not like cardboard so that was good! I fear that crazier side effects may hit Thursday and Friday like my previous chemo. Maybe not though?  Overall a much better day, so thank you MBC. I’m proud that I was able to accomplish all the things I did today but now need to rest. Why? My fatigue is getting worse. I’m watching “Maid” and currently re-watching “Madam Secretary” on Netflix. Oh! I see a new season of “The Babysitter’s Club” is available on Netflix too! I grew up reading those books! That series… along with “Satin Slippers” and “Sweet Valley High” were among the books I read growing up. Also, “The Cricket in Times Square” and that set of books had me hooked during my years at Middleton Elementary School. 

Till tomorrow. First, some tea.

Sincerely,

Jessica

Day 18: "Dear MBC"

 October 18, 2021

Dear MBC,

This is going to be short. I was up earlier than usual to get some work in before having to leave bright n’ early for the hospital. I didn’t sleep too great last night but it wasn’t too bad! However, I went to make coffee this morning and sprinkled paprika into my coffee instead of cinnamon! Oy vey! LOL I met with my oncologist. I honestly didn’t have much to say. I knew the nurses would go over the new chemo with me. He asked about my eating and I told him about the pain I had last week. It was a very routine visit… in my opinion… despite the fact I was changing to a new chemo. This chemo is similar to my last one. It has a couple different restrictions and some new possible side effects on top of the usual ones. The top one… fatigue. As you know that’s a new one, MBC. However, it’s supposed to be pretty bad with this chemo. Really? Like how can it be any worse?! Never mind. It can be so I take that back! 

Usually, when I get home from chemo I can eat and have some energy and feel pretty good. It’s usually not until the later part of the week when I start to feel crappy. Today was different. Today I was completely wiped out. My parents and I ordered food. I wasn’t able to eat any. I went to sleep on the couch and was there for a long time. That has never happened with any of the prior chemos I had. I’m curious how I’ll feel tomorrow. I did eat a little something. Veggies and hummus! I also had a few marshmallows. I know! I know! I put them away. LOL Sometimes you just want a fluffy cloud of sugar. I’m going to go wash the hospital off of me and drink water.The nurses were all like hydrate, hydrate, hydrate, hydrate and hydrate more. 

Till tomorrow MBC. 

Sincerely,

Jess

Day 17: "Dear MBC"

October 17, 2021

Dear MBC,

It’s been a beautiful weekend here in Chicago. The rain moved out and the sun and cold came in! The sky was blue and the air crisp. Perfect for an outing and one this girl desperately needed. MBC, you keep me inside a lot. Between work, side effects and appointments I’m either home, at the hospital or on an acupuncture table. I get my short walks in… but the one thing that you gift me is fatigue. That’s what I want to talk to you about today. The beautiful weather had me off to the zoo yesterday. It’s something I’d been wanting to do all year. I start a new chemo tomorrow. It’s the end of week three post infusion. It’s when I’m usually feeling my most “normal.” However, I’m not feeling too normal today. Why? Dumb fatigue, MBC! Now, for those of you reading my diary you know tired. Everyone's been tired more than a time or two. So, when cancer patients talk about fatigue caused by treatment and cancer, people might think they can empathize. But this kinda fatigue is not like anything else.

The lethargy I experience with treatment is no surprise. It happened in 2016 as well but not like this. I’m going about my business and then BOOM it zaps what little energy I have. I could just be sitting and it hits. It's like a faithful companion that never leaves my side. It’s concurrent with extreme physical weakness sometimes. Hence, not being able to type this blog last night.

So let’s get back to yesterday. My dad and I get to the zoo. It’s so fun! We walk all over and see the animals. Less than two hours later we’re back at my place. I am dead. Not just fatigued but just … empty. It’s just so frustrating that something so simple is so draining for those with chronic illnesses like you, MBC. I think back to my days of going to the gym and running daily. Will I ever be able to do that again? Less of two hours of walking just laid me up. I checked my Pacer app and it said we walked three miles. I think back to my days fighting cancer in 2016. I was in NYC … which is a walking city. I remember walking in Central Park and still going to spin classes! I’m just unable to do that this time.The fatigue is always there. I take naps but I just don’t wake up refreshed anymore. Hopefully, this new chemo will do its job and I can try to rebuild my strength a bit. 

Every three weeks, the round of chemo robs me of strength and alters my day to day life. Even attempting the tiniest of tasks, like brushing my teeth, showering or making coffee … my body just doesn’t always support me. Not only is fatigue physical but it has emotional side effects as well. When daily objectives revolve around what needs to be done over what doesn’t… well… it just isn’t too exciting. Maybe that’s something I need to work on internally. Flipping the switch to include a bit more fun and normalcy into a non-normal life. I mean it’s not normal to be in pajamas at 5pm on a Sunday but I am. It's not normal to have your eyes closing as you type. I don’t feel bad about it. It is what it is and I’m quite comfy. LOL! I’m just fatigued. My eyes can barely stay open. I am still on “E” for empty. I’m unsure how to refuel but plan to finish my liter of water, try to eat a little something more, have some tea and hit the hay. I have an early and long day tomorrow. You get to meet my new weapon against you, MBC. The new chemo. Pew! Pew! Pew! 

For now… I gotta get off this computer. Till tomorrow.

Sincerely,

Jess