That Cancer Girl

As I am currently in the middle of yet another treatment, I would like to take a moment to reflect…

Reading what I post and interacting with me offline, you may think that this cancer journey has been an “easy” one for me. Well, it hasn’t. I just choose not to share the negative aspects on social media or in conversations with others. Instead, I focus on the “positives” – because let’s be honest… who really wants to hear about the bad or difficult times?

So, I don’t.

I don’t share how anxious and nervous I get before every doctor’s appointment, even just regular check ups and blood work appointments.

I don’t share how terrified I am that I may not ever be cured of or from what should be and is known as being a curable disease.

And I especially don’t share how self conscious i’ve become about my looks and appearance with and after every treatment that I get, knowing full well that I am becoming less “picture perfect” than my pre-cancer picture perfect self.

I am well aware that I may be minimizing the daily struggles I and many other young adult cancer surthrivers like me face by not sharing about them. Maybe I should share more. But if I did, would anyone take the time to listen or read, though? Would they even care? Or would they just click the “X” or “Close this browser” while thinking, “oh great, not that cancer girl again”?

The World Needs to Act Like a VHS

… or at least like a CD or DVD.

What I mean is that I think that what really needs to happen right now is for everyone to just push the “pause” button and take a beat – even just a day, 24 hours, to collectively do absolutely nothing – don’t go to work, to school, the store, the doctors – nowhere. Don’t even think. Everything just shut down. And then hit the “reset” button and finish out the rest of 2020 with a renewed energy – refreshed and renewed, healthy (mentally and physically) with a collective agreement to finish out the rest of the year with everyone being intentional about being the best possible versions of themselves and making smart, logical, rational choices.

I myself don’t protest because i’m not entirely convinced that it’s the most effective way to bring about long term change. I of course don’t mean to say this to dis or disrespect anyone who does; but I know of a number of social change and social justice non-profits and organizations, there are probably hundreds, that are always looking for volunteers and members throughout the year that will join them to continue the fight for fairness and equality and that are being able to have or get a seat at the table with community, regional, and national leadership to fight for the cause and be heard and create change. These organizations are always looking for passionate people because there is strength in numbers; and the more people you have lessens the chance of burnout of the members who are already in there and out there on the frontlines. So my thinking is that if ALL of the people who are out there protesting in the streets will commit to joining at least 1 of these groups then that might be the key to getting that prime seat at the table with someone who has the power to actually do something thus implementing real, long lasting reform and change.

It really feels like nothing is safe right now – not your health, your livelihood, your state of mind, your wellbeing.

I would say that this coronavirus pandemic has certainly not helped matters either – at all.

And I know that asking the billions of people on this Earth to act like a VHS tape for 24 hours is asking for too much – but it’s a thought. The best one I got at the moment.

So I guess until that day when everyone will decide to give up – give up always having to be right, give up needing to be seen, give up selfish behavior, give up purposefully being unfair and unkind – I will just be sitting up in my room, praying and waiting to exhale…

… not really tho’ because the odds of that happening is slim to none and i’ve been down too long over these past 12 years that i’m tired of being in the cage and ready to get busy living! So for now I will just be the black female version of Where’s Waldo – you might see me, you might not, I might blend in with the crowd, I might stand out – but what I will be doing for sure is wearing a mask.

Delayed But Not Denied

[What I had started out my post for April with…]

So hello again world! Guess who has a j-o-b?! Me!

*insert burst of confetti*

But guess who has to wait 30+ days before she can begin because of the virus??

That’s right – it’s me again!

It’s alright though. I figure that since i’ve been waiting this long, what’s another 30+ days, right? The main thing is that i’m locked in and there’s a date to look forward to again. Hopefully this one won’t get changed again though – which in turn would mean that the virus is deflating.

Meanwhile my parents are driving me nuts being home all the time. I love them and know they mean well, but i’m used to having solitude for at least 7-8 hours a day and this covid has totally destroyed that and leaving me hanging on with just bits of my sanity left. Pre-quarantine, I think that the house is a pretty good size for the amount of people living here and now it definitely seems not big enough.

[Present day in May…]

Clearly the above was not posted in April because I forgot (lol) – so I have failed at 1 of my New Year’s resolutions – not even 6 months into the year!

*insert tune from The Price is Right when you lose*

It’s okay though because I was working remotely part time and scouting out apartments! I am still working remotely, but have been boosted to full time status!

It has been very interesting and quite challenging starting a new job at a new place of employment virtually. I feel like i’m treading water and/or doggie-paddling through most days – barely keeping my head above water. Not because the work or job itself is hard, but is difficult for me to learn how things are done at a new place without physically being there and shadowing someone. But thankfully everyone has been nice and kind and patient with me, so that’s been helpful. And working, even remotely, has put me one step closer to moving out – so ultimately I am at a place of thanks and gratefulness.

This coronavirus tho’ is straight up, flat out annoying and needs to hurry up and crawl back in the hole it came out of, never to be seen or heard from again. Ever!

Don’t Panic

I wonder why whenever someone says “don’t panic” or “don’t worry,” you – and i’m including myself here – will immediately start to panic or worry about whatever it is, even if you or I wasn’t even thinking about it before! Well welcome to the state of the world and America today! This coronavirus has everyone on edge and preparing for and acting like it’s doomsday or the end of the world or the apocalypse. I’m actually a bit happy that everyone is being so proactive and cautionary because over the years, I have noticed that people have progressively become UN-hygenic – – not properly washing their hands, not covering their noses or mouths when they cough or sneeze, not giving you proper personal space… now people are going out of their way not to be in public or be near you – – so as a cancer surthriver I am overjoyed that people are finally behaving, acting, and doing the things that they should’ve been doing from the start, pre-virus; and hopefully will continue doing once the virus has dissipated.

Surprisingly i’m not freaking out about the virus – maybe because i’ve had cancer. Maybe I should be more concerned than I am by me being immune-suppressed and having a compromised immune system; but I surprisingly feel a peace about it. I’ve had experience with self-quarantines… circa 2013 when I couldn’t go out for 180 days post stem cell transplant and then had to stay away from crowds for an additional 3-6 months after that! I kinda really feel like people are going overboard about all of this though. What the general public is failing to recognize is that it is possible to take precautions and recognize the seriousness without freaking out and buying everything at the nearest Walmart or Sam’s Club.

So fellow readers I ask of you to just be smart about it; and leave you with these verses of Scripture… Psalm 121:7-8: “The Lord will keep you from all harm. He will watch over your life; the Lord will watch over your coming and going both now and forevermore.”

February the 14th

So I was given a suggestion to write a post about Valentine’s Day for February…

There’s really not too much that I have to say about that.

I’ve never stayed in a relationship long enough to experience a “true” or “real” V’Day. I either ended the relationship in January or started dating someone in March that didn’t last until the next Valentine’s Day. I admit and will agree with you that that is a terrible track record that I do genuinely hope to break one day; but I am definitely not one to stay in a relationship just for the sake of being in a relationship if there’s no connection and/or when I don’t see it going anywhere.

I do have hopes, dreams, and aspirations to get married one day. A preacher had actually prayed over me my Sophomore or Junior year in undergrad that whoever this guy is, that once we locked eyes we both would just know that we were meant for each other. So right now i’m just really waiting for him – whoever he is – to just show up one day with an “I’m the One” shirt on so that I know that it’s him and we proceed from there. Until then I will just continue to call Valentine’s Day by its date; and my February the 14ths will be filled with self care and self given teddy bears, chocolate covered strawberries, movies, faux flowers, and fake booze.

That’s all I really have to say about that.

Anyway, since it is February I will say “Happy Black History Month!” If you haven’t made it to the National Museum of African American History and Culture in DC, make plans to! It is life changing! And it will teach you WAY more than you have ever seen or been taught about black history in your entire life. If the museum ever decided to teach a course(s) about black history just from the information in the museum alone, I would be the first to sign up because i’m sure that I missed and didn’t completely digest most of what I saw while I was there simply because there’s just so much. And everything is so detailed.

So that is my Black History Month Public Service Announcement – get to the National Museum of African American History and Culture if you haven’t already; and if anyone starts a petition or request for the museum to at least do online courses about black history please let me know.

Endnote: fake booze = mocktails, sparkling cider, sparkling grape juice, church homecoming punch

Time Is Filled With Swift Transition

Funny how attending a funeral, or even hearing of someone close to you or that you looked up to passing away, has a way of getting you to think about your own mortality moreso than going through your own near death experience, like cancer. Mostly, when I think about death – which BTW isn’t often so no need to jump off of here to go run and tell my mama or authorities, i’m just sayin’ – i’m sad because what i’ved realized is that I love being alive. I have a desire to survive.

There’s so much violence and hatred in the world; and then when something unexpected and tragic happens, the world seems to stop for a minute to digest and try to make sense of the moment then make empty promises to do better and be better before returning back to however or whatever they were doing before.

The life cycle of the human condition.

When you fail or fall, you put on a band-aid (figuratively or literally); and when you think the wound is healed, you rip off the band-aid and go on like nothing ever happened. Keywords: when you think the wound is healed.

Since we’re being honest here, I guess that’s kinda been my approach along this whole cancer journey… that when I think i’m over it, over cancer, that I just proceed forward acting like the life sucking experience I just had didn’t happen. Probably not the best approach, but seems like the logical next step, at least in the moment.

With that being said, life is filled with so many choices and decisions that have to be made. I struggle with good, better, best… yes it would be good if I could simply just get a job; it would be better I could get a job that pays well; and it would be best if I got a job that pays well and that I actually enjoy… Yes it’s good if I am kind to and patient with others; it is better if I am kind to and patient with others which in turn causes them to be kind and patient with me; but it would be best if I am kind and patient with others, they reciprocate that to me, and I in turn am kind and patient with myself as well.

So, what’s next? What is the answer?

Well the title of this blog post is actually a line in the hymn “Hold to God’s Unchanging Hand” – so since I don’t know and don’t have the answer, and honestly may never will, I will do as the song says and simply just try to hold to His hand, God’s unchanging hand; and go forth with a goal of moving forward focusing on God and the things that bring me joy, peace, and happyness – spending quality time with people that fill my heart and make me smile, giving, finding and getting a job that I won’t dread going to everyday, becoming more involved with the AYA cancer movement, awaiting the love of my life finding me *ha*, eating more Ling Ling tonkotsu chicken ramen, and drinking more Luzianne green teas with honey 🙂

To all who may or may not be reading this I challenge you to go find your happy!

YouTube: Alfred Street Baptist Church – Hold to God’s Unchanging Hand https://www.youtube.com/watch?v=navP_n3mtH0

 

Plea Deal

Dear Employers,

I am sorry that the gaps in my employment bother you. To be honest, it bothers me too. I can honestly say that if it were up to me there wouldn’t be any. But there’s a thing that i’m sure you’re familiar with called “life” that some times, often most times, gets in the way of your, especially my, plans.

See life decided to interject a thing called cancer into my world RIGHT after I had graduated from college; thus giving me NO time to establish a credible foundational work history that would make me look more appealing to you. Not only that, life saw fit to interject that C word into my world 3 more times since then just to make you take more 2nd and 3rd thoughts when you review my application for your open positions. But if you took the time to really look over and properly consider my application you would see that in every instance of a diagnosis or recurrence, every gap, I didn’t quit. I didn’t give up. I sprinted back into the workforce, even volunteering, just as soon as I was able; and remained in the positions until life decided to hand me yet another blow. And if you were to ask the employers of those jobs about me, you would see that I never let my health or history interfere with my work. I left those positions when I knew that I would not be able to efficiently or effectively continue to handle the duties and responsibilities of what I was hired to do.

So dear employers, I ask of you not to just simply toss my application to the side when you see those gaps ESPECIALLY when you can clearly see that I am qualified – even with the gaps in my employment. I ask of you to just simply take another look. There is a story behind those lines and a person behind the print that is desperately trying to regain some sense of normalcy in the unnormalness of her world.

I leave you with this… https://www.youtube.com/watch?v=oCrKy03-9Tg

Sincerely,

You know my name

#stupidcancer

 

Hello 34

Since 2008 -> 1st recurrence in 2012 -> 2nd recurrence in 2014 -> 3.5th recurrence in 2018 I’ve been waiting until my birthdays to exhale before I subconsciously start holding my breath again. Seeing new and old friends pass away each year does something to you and makes you think about and reminds you of your own mortality.

I’ve unintentionally made 2019 my “gap” year since I never had even a chance for or to do one post college – undergrad. Except for unlike Malia Obama, I have been occurring debt for the trips that I’ve decided to take so far this year. But in the end, I would say that the added debt has been worth it. It would be even more worth it if I could teleport back to those times and those trips when the weight of the world gets heavy on my shoulders.

What will 34 bring I wonder?

Hopefully maybe Married at First Sight. A job that proves to be the right fit for both me and them (the company). More travel?

So far it’s brought me mixed signals – with regards to my health, relationships, and career/professions. And bug bites.

I can honestly say i’m feeling more lost and in limbo than I’ve ever felt on this cancer journey; and I don’t know what to think about it or how I feel or am supposed to feel about it. It’s an uncommon and unfamiliar space for me.

You know those people who complain about their birthday or the thought of getting older every year? Just like fellow Cancer Bae Kacy, I can’t relate. I love getting older! Because it’s a reminder of the blessing of life that God has given me. I fought and still continue to fight really hard to be here; so I will embrace this year with open arms! – or at least intentionally try to

 

Jesus Must Love Me An AWFUL Lot

No, seriously. He must about to make me be His honorary 13th Disciple – or 71st, according to some biblical scholars.

[Insert what has drawn me to this conclusion]

I mean, really. Never have I ever heard of anyone going through as much as I have and are currently experiencing at my age. I will spare you the lengthy details, but am happy-ish to share if asked. Granted, I am totally aware that there are plenty of people my age who are going through as much as me or maybe even more, but in this moment I would have to say zero, at least within a 5-10 mile radius of where I live.

[Insert context as to what has drawn me to the title, hypothesis, and conclusion presented in the first sentence of this post]

James 1:2-3:  2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.

1 Peter 1:6-7: In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.

1 Peter 4:12-13: 12 Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you.13 But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

[Insert more context to prove my hypothesis and conclusion]

I feel like I deserve an honorary doctorate just on or about Life in general. This week alone I went from having stellar health news to inconclusive and questionable health news/results. Went from seeing 2 jobs that seemed to be “dream jobs” within a 1-2 hour radius from me being taken down as quickly as they were posted up. Went from feeling secure about pretty much everything to not so sure about anything.

I mean, geez. Geez to the louise man. Geez.

One thing I know for sure that cancer gives is uncertainty.

However…

One thing I know for sure that Jesus gives is hope.

Psalm 34:19: 19 The righteous person may have many troubles, but the Lord delivers him from them all

[Insert praise break]

Until next time America!

[Yup, quoted Maury Povich]

[Yup, still a work in progress]

 

The Saga Continues

So the rantings and ravings of a cautiously optimistic, 33 year old, introverted extrovert cancer surthriver carry’s on.

My 2018-19 Holiday got cut short by a clinical trial that I did not want to do, had ZERO interest in, but ultimately might’ve saved my life. I had to go to NC 2 days after Christmas and stay through mid-February to do a car T cell therapy clinical trial. It actually went way better than I had imagined and thought that it would be. Go figure. I just don’t like the phrase or term “clinical trial” – to me it sounds so unsure, so insecure – if a term can even sound insecure or unstable. BUT I survived it! And now I realize that clinical trials are not so scary after all. They’re more or less no different than any other treatment, just the verbiage is different.

Made it back to CancerCon in April and had the time of my life! I knew that I wanted to go, but being there made me realize that I actually needed to be there. I felt normal, free to be me. I got to volunteer, made some great connections – not to mention acquired a ton of free swag! At the end of the conference I left Denver with my heart feeling so full and so grateful for the chance to just live and be there and take full advantage of the opportunity given to me. I was even able to see and hang with 1 of the Cancer Baes and meet new sorority sisters! It was the best 4 days to date! I wish I could have more experiences like that on a regular basis.

Sidenote: CancerCon is an annual conference put on by the Stupid Cancer organization for young adult cancer patients/survivors ages 18-40 where we can learn about resources for our population, how to deal with life as a YA cancer patient/survivor, and to just be around others like us who just “get it.”

Since then I have been on a quest to just get busy living and max life out! – in part because I left the conference feeling so reenergized and empowered and also due to the fact that my docs now want me to consider going ahead and doing a 2nd stem cell transplant, something that I don’t want to do – especially since the car T cells seem to be working. It is a current internal ongoing debate for me of doing what the docs (and fam) want me to do – doing the 2nd transplant sooner rather than later – and what I want to do – waiting and seeing what these car T cells are going to do before jumping into another treatment.

We shall see what happens I guess and who will win in the end. In the mean time in between time I have decided that I am going to attempt – and I say attempt because life has a way of interrupting my plans – to spend the rest of this year “doing me.” Taking monthly trips (as much as my bank account and credit card allows), volunteering, and being more mindful and purposeful about exercising and eating healthier.

Will she, meaning me, do it?

Can I pull it off?

Will I be successful?

Dr. Seuss, Bob the Builder, and Barack Obama – in my mind – all seem to think so. So, Si Puedo! Yes I can! – Hopefully (lol)