Life & Health

Contemplating Chemotherapy: Day 2 – The New “Normal”

September 2, 2016

Winston as the New “Normal”

Everyone: meet “Winston.” Winston is the new “normal” for me during the first 72 hours of each of my 6 rounds of chemo. Winston is a satchel of sorts, designed to carry my chemo cocktail and infusion pump with me everywhere I go, that way I don’t have to just sit in the hospital all day to get my chemo infused. So I like Winston. We are good friends. I have named him “Winston” because it sounds like the perfect name for a proper British butler. He never leaves my side, and as long as I let him do his job and don’t interfere by leaving him on a table somewhere or getting him caught on a door handle, he doesn’t make much of bother. He is sort of chatty, in a routine kind of way – but it’s never bothersome since he is very polite and soft spoken. He only interrupts me when there are dangerous circumstances (like “Low Battery!” or “High Pressure!”).

Meet Winston

Many of y’all saw the above photo on my Facebook wall quasi-poll about how I should wear Winston. The top two positions were the most popular options, with the “Where Murse Meets Messenger” style (top left) coming out on to, and the “Bring Back the Fanny-Pack” (top right) taking a close second (thanks for voting!  – but this is a dictatorship, not a democracy… I kid…). Personally, I have found that the Murse is the most professional for work and when I want to be out and about – although the attitude of the Fanny-Pack really has its times that it can shine if I can just get up the guts to rock it in public. I actually use the lower left option (“Underarm Baby-Cradle” or “don’t snatch my purse”) a lot while around the house because I can set it down somewhere and it turns into some sort of “Human-Leash on a Table” which I dare not forget about when I move for fear of ripping out my port in my chest and spewing toxic chemicals about myself and everything around me.

As far as the physical side of Day 2 of Chemotherapy has gone, not much has changed in my normal routines. I haven’t felt too bad – the only side effects I’ve noticed are a little bit of fog in my head at times, some low-level fatigue (mostly in the evenings), and then my mouth gets dry a lot faster so I rinse my mouth with a Benetene mouthwash that people who have been through this chemo before swear by to protect from mouth sores. Other than that, I just have to remember that it takes me a little longer to do normal things since Winston and I are attached for good for 72-hours (bathing was the hardest, since I can’t get my port wet yet, and Winston hates water – so I had to saran wrap him to my chest and leave him outside the bath on a long leash so I could gain some manner of cleanliness).

For those interested, here is a photo of the inner workings of Winston:

Winston

Pretty simple – just a bag of my light red “Chemo-Cocktail” (or “Kemo Kool-Aid” for those underage in the audience), then an infusion pump that the pharmacists program for me every day when I go in for a new concoction (which takes about 30-60 minutes).

IMG_3014

I also have this sweet “Chemo Spill Kit” which is practically a total-body blue hazmat suit that I have to don immediately if my line gets cut or Winston starts leaking anything. Basically, any of this stuff getting out means I need to call the CIA, FAA, FDA, NRSA, NASA, KGB, PETA, NBA, WWF, and then the local police (in exactly that order) to make sure I don’t accidentally start a global act of bioterrorism in any public place. Part of me sort of thinks that’d be a fun to see those groups meet up and interact, but that would definitely make it difficult for things to return to normal since they’d probably quarantine me for life – so I’ll try to avoid it.

The New “Normal” in Public

As much as I like Winston as a companion, he won’t be a constant companion for me during my 18 weeks of chemo. For those who do not know, the way it will work for me is that I have 6 “rounds” or “cycles” of 3 weeks each for my treatment. What that means is that for the first 72 hours of each round I’ll be getting a constant infusion of my chemo cocktail. Once that time is up, they say I’ll feel the effects of chemo the worst from Day 4-7 as the chemo goes through my system. Then the next week my blood counts (white blood cells, red blood cells, and platelets) will continue to drop until they reach their lowest around Day 14. After that, the idea is to give me a full week for my body and blood counts to recover so that I can start a new round after Day 21.

So I will only have Winston for a total of 18 days during my 18-week treatment, and the rest of the time I will be unattached and free – as far as most people can tell I will look “normal” (except when I start losing my hair around 10-14 days into my first round – but let’s talk about that later).

But the truth is that, with or without Winston, this week has started a “New Normal” for me for the next 18 weeks, and perhaps beyond. I’ve been thinking about what that looks like, and as I’ve searched my fears and anticipations for this new normal, I think there are about three different places that I’m nervous about experiencing it right now… And in the future… Or have already experienced it.

At Work

Unfortunately, since I work at an airport and do mostly ground handling, much of my work is pretty physical – which I really like – but it doesn’t go so well with multiple surgeries and chemo and Winston by my side. Thankfully, my coworkers and employer have been great about letting me work a modified “light-duty” during my shifts. Since I can’t lift anything more than 5lbs for a week after getting my port placed in my chest, that means I can’t do 90% of my job that involves lifting bags (or practically anything at an airport besides scanners and wands). Luckily we’ve had new hires, so I’ve pretty much just been trying my best to train them and help them learn the ropes (read: tell them what to do and what to pick up, because I can’t do it). So that helps me feel a little more useful.

My coworkers have been great – even the new hires who don’t know me. But the hardest part about this new normal at work is probably letting go of my pride and realizing my limitations. I actually really enjoy my job, and having been there for about three years I’ve gotten pretty good at the flow out on the tarmac with the planes coming in and out – so I can see what needs to be done pretty easily. The tough thing is – most of what I see, I can’t do myself, and I really hate when I feel like I’m not helping at all because I want our operation to run smoothly and I want our passengers to be treated well. So when I pull up the jetbridge to the aircraft, and people are waiting for their valet bags to be unloaded and handed to them, I hate that I have to wait for my coworker to come bring bags to customers while I stand there looking like a lazy jerk who doesn’t want to work, or who has no idea what is going on. And it only gets worse when the captain or first officer starts helping with bags while I just keep standing there twiddling my thumbs and watching.

Ultimately, this is just an issue of sucking up my pride and recognizing that right now the best thing for me is to not try to lift a 30lb valet bag and put myself out of commission for weeks against my doctor’s orders because I’m concerned about what a passenger thinks of my work ethic. My coworkers all know my limitations, and will even get mad at me if I try to lift more than they know I can – so they have been great about letting me know that I’m not useless or lazy, and they really care about my health and don’t see me as being lazy or useless. It’s just in my mind that I need to make an announcement to everyone whenever I’m not lifting bags, like: “I’m not being lazy, people! I had major surgery and am on doctor’s orders not to lift more than 5lbs right now. Please stop giving me the stink-eye and silently judging me with your smug face while you wait for your bag. That is all. Carry on.”

At the Cancer Center

The new normal at the cancer center is that I have yet to see a younger patient than myself – actually, I have yet to see a younger person than myself there (except for the nurses or staff). The closest in age I have seen is a guy in is mid-to-late-thirties. Other than him, I stick out like a sore thumb – which as an introvert, I hate. I want to blend in. I want so badly to just be normal, and this is something I can’t hide very well at all. Every time the nurse brings me a new IV medication or my chemo cocktail and asks for my date of birth so that they make sure I’m the right person, I feel like all the other patients’ ears perk up to catch my birth year to see just how young this new kid is. So I try to say it really fast or quietly because I just hate the idea of standing out. Or when I sit in the waiting room before going in, I can’t bear to make too much eye contact with the others waiting there. I’m not totally sure why this bothers me so much, but I guess I don’t want to be pitied because I am young and dealing with cancer and chemo. I just want to be a regular 30-year-old who has bills to pay, a job to work, and typical 30-year-old health problems: like gaining weight in new areas or finding out my body is finally past its prime and things are starting to get sore if I don’t stretch regularly. Why couldn’t I just start getting a beer gut and be labeled as “that guy” instead of “that poor young cancer patient.” Again, this may all just be in my head and based on my own fears, but that’s part of why I dread going to the cancer center.

At Church

I have not yet been to church since starting chemo and letting everyone know about my diagnosis, but this is probably one of the places I’m most nervous about going to experience the “new normal.” I hate that this is the case, but it is honestly how I feel. Now I should preface this by saying that I love my church and the people in my church – I’ve known lots of them for most of my life, and I really do know that people ultimately care about me and my family in deep and profound ways. I have been absolutely blown away by the support I’ve had during this difficult year, and am constantly reminded by how many people are praying for me daily. That is all so beautiful, and it moves me to see the church acting like the body of Christ in situations like this – that is what makes me want to dedicate my life to pastoral ministry, honestly. However, as we all know, church can also be a very awkward place for honesty and not being “normal.” That is what makes me so nervous.

I’m not worried about my close friends who have been calling and texting and visiting me – who know that this is not normal and are here to bear my burden. What I’m nervous about is that somehow now that people know that I have cancer they all feel like the Christian thing to do is encourage me when they see me at church. This automatically makes me try to avoid eye contact with people when I enter the church doors because that initiates this deep need they feel in their bowels to “say the right thing.” Now, I know that no one generally has bad intentions when initiating these conversations or thinking of things to say – they really all mean well – but it just so often comes across all wrong. I have a lot of things to say about these situations, so perhaps this will become a blog post of its own in the future, but for now let me just give you a few words of advice for this upcoming Sunday from my own experience when trying to encourage someone going through something difficult like a death or a life-threatening illness:

  • First, recognize that everyone is different and thus we are encouraged in different ways – please don’t take this as a universal guide to encouraging people in hard times. I’ve seen how differently I’ve grieved my dad’s death as opposed to how I grieved my sister’s death, and now how I am working through this illness – so even a single person can respond very differently to encouragement at different occasions.
  • Second, it is okay to not know the “right thing to say,” because generally whatever you’ve concocted is probably not perfect and will never be. Trust me, you’ll eventually put your foot in your mouth, but you’ll probably be more embarrassed for yourself than I will be embarrassed about what you said. One of the best things to say is something like, “I’m so sorry to hear about this. You’re in my prayers.” Short, sweet, and to the point.
  • Third, I personally appreciate hugs and presence – but I recognize that not everyone does. But I’m still an introvert, so when you hug me don’t then stand around and follow me to “be present” with me the whole morning. I still want to be normal and not just pitied. Hug me, say you’re sorry that I’m going through this and you’re praying for me, then move on. I don’t need a posse of people being present with me, especially as an introvert that prefers some personal space after a good hug.
  •  Fourth, it is okay to talk about things other than my cancer and chemo. It’s been an emotional two weeks for me, and sometimes I don’t want to have to go through that rollercoaster with every person at church each week. Sometimes, I do want to talk about it – but the church lobby isn’t always the best spot for that. But I want to be normal too, so we can talk about the sermon or Sunday school class, or the football game or board game that you just discovered. That’s okay, that’s not ignoring the elephant in the room – it’s treating me like a person who is doing more than just fighting cancer and going through chemo.

And finally, I’m realizing I have so much more to say about this, but this post is already too long and I can’t even begin to put all the nuance I want into it. So I’m just going to stop here and keep my other thoughts for a later post about how to interact with someone in a difficult time. Hopefully, I’ll be able to give examples of things that were helpful to me, and examples of things not to say that were not helpful. But right now I think I need some rest before work.

Sorry: chemo brain already.


More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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6 Comments

  • Reply Eric September 3, 2016 at 5:41 pm

    I love that your bag is the Wolfpack

    • Reply Lyndsay September 3, 2016 at 8:27 pm

      Yes! Jason totally neglected to mention that very important fact, where is the “Wolf pack” pose?

      • Reply Jason Custer September 6, 2016 at 10:10 am

        I’m not exactly sure what a “wolf pack” pose looks like?

    • Reply Jason Custer September 6, 2016 at 10:11 am

      It is fitting.

  • Reply Amy September 3, 2016 at 6:17 pm

    Been praying jason and thanks so much for the update. You may be 30 years old but you’re more like 50 maturity wise

    • Reply Jason Custer September 6, 2016 at 10:11 am

      Thanks, Amy.

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