Refocusing After Cancer, 3 Months into My Son’s Diagnosis

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My son has cancer. I’ve been refocusing after the cancer diagnosis. Priorities shift. But, you know it’s been a bit too long since you accessed your blog when you forgot your password.

What can I say, there’s been a lot going on.

I’m not going to have a lot of profound things to say (I think). I should give an update of how things have been going since my (now) 3 year old son was diagnosed with cancer right after Christmas 2018.

(Addendum, I lied, I can’t help but have a psychology couch session with myself when I write, so read on!).

It’s been… life shattering. Ego shaking. I just feel like life is so profoundly different now than it was in December.

I went from being a highly goal oriented, meticulous planner to someone who mostly doesn’t plan more than a week in advance.

Luckily for me and my family, we’ve been smart about how we do things and saved well. That means much of our “normal” life has transitioned relatively easily to being put on the back burner, stopping, or going on autopilot. More like, we have so few commitments that it wasn’t that noticeable when we disappeared.

A quick summary of life

I feel like I’m pulled in 40 directions at once. I have not checked the voicemail on our home phone since 12/23/18 and I figure anything there must not be very important.

We get a mail delivery about once a month. There’s very little that’s really important enough that you have to deal with it RIGHT away.

I never answer my cell phone anymore. Fully expect to go to voicemail. I may or may not check my voicemails.

I’ve found more work opportunity than I can (or should?) be taking on perhaps. It’s good to have something to focus on, but I worry of letting people down. It’s still just a little in the grand scheme of things, but, cancer is the full time job, everything else is just extra.

Apparently I’m quite inspirational to people and when they ask how I’m doing I really don’t know how to respond except, ok, I guess? I try to focus on the good, take advantage of opportunities that present themself and so on.

I’ve got plenty of distractions. But, sometimes, I’m just not in the mood or too exhausted to deal with a distraction.

When I sit still, when I rest, that’s when I get sad. That’s when I have time to let myself think on just how fucked up this all is and how incomprehensible my life is to most people, even those who try to inquire with the best of intentions.

A bit more about the cancer diagnosis

Cancer is never easy.  Life with cancer is not easy for adults, not for children, not for families.  And, not to make us sound like a particularly hard luck case, but when it comes to childhood cancers, neuroblastoma, which my son has, in the high risk genetic amplified category is particularly rough.

Don’t get me wrong, there are worse cancers to have, like DIPG, with virtually no survival.

At least we have odds, at about 50/50 for five year survival.

But (gleaned from talking to other families online and so on), the course of treatment for this version of this cancer is long and hard and basically all encompassing.  For the first month or so, we still thought that life would return to some sort of normal.

New “Normal”

And, in a way it has, but..it’s not a normal “normal”.  It’s more like, that when life calls for it and you just have to DO, people can be remarkably adaptable and resilient.  At least I’ve found that I seem to be.

Why not normal-normal?  Well, my husband has been home TWICE since 12/24/18 (a sum total of about 5 days), and my son and I  have been home ONCE, for about 48 hours (which culminated in a trip to an emergency room en route to Portland for the developing fever- we narrowly escaped an ambulance ride to Portland and got to drive ourselves the rest of the way to the hospital).  There’s just so much shit going on and so many moving parts, it is nothing short of a full time job dealing with this!

I should have an honorary nursing license after this, at the very least a CNA. We flush central lines daily and are now adept in nasogastric tube feedings and so on.

SNAFU

Even with our best efforts, it’s an ongoing exercise of SNAFU.  For example, one of the chemotherapies that my son must get causes hearing loss.  We were under the impression that he would get a baseline hearing test (had) and then a hearing evaluation after each round with that particular chemo.  So, before getting it again this week, we had been asking about it for the last 2-3 weeks as it was never scheduled.

Multiple people told us that he didn’t need it because he had had the baseline.  Suddenly, I get a call at 3pm on Friday that we have to get in on Monday (before chemo again on Tuesday) to get the hearing test. There went half my day… Even with the best education, advocacy and planning on my part “emergencies” come up all the time.

On a regular basis, we have outpatient appointments at least twice a week that take about 2 hours minimum, though, at any time, when he needs a blood product, could easily take 6 hours.

Due to planned chemotherapies, surprise emergency medical procedures and that fever, we’ve spent 3-4 nights out of each of the last 4 weeks in the hospital.

Keep on Keepin’ On

What’s funny is, something that seems like a huge deal to a lot of people is quickly just becoming our a way of life.  As long as we don’t plan too much else and are ready to quickly cancel our plans at any given moment.

It’s been a strange process for a planner like myself.  It’s also been quite strange for me to admit that it’s ok to not be fully reliable right now. It’s not that I’m ok with it, but, I guess, I know other people would understand.

I say that, as, I had already been really good about only planning things to the extent that I was sure I was able in our previous life. Already, I had made a point to not overextend myself, meaning I wasn’t in the habit of having to back out of things.

So many learning experiences here.  One thing is for sure – I’ll come out of this a stronger person.

Personal Growth in the Hardest of Times

Trite as it is, there is something to be said for the old adage, “what doesn’t kill you makes you stronger.”

It’s doesn’t mean you won’t come out of it with new baggage. But, if by some means you can find a way to cope to some degree, how could it not? That, or you will let it destroy you.

Of course, this is easy to say for me right now, as we are still early on into this journey. Talk to me again if I end up being someone who loses a child.

Focusing Nervous Energy

I am learning to give myself a little grace, but also strangely focused.  I have more interest in creative projects than ever, and feel like I’m doing a pretty good job of juggling a whole heck of a lot of stuff.

On top of ongoing struggles to figure out my per diem job, through which we have our insurance, I’ve taken up a part time job with a local pharmacy.  More on that perhaps in another post. But, it seems like a nice place to work and a somewhat non-traditional role. I was honest in my personal situation right now and they chose me anyway, even offering that it can be extremely flexible to my personal needs and time constraints right now.

I’ll admit that my blog isn’t that big of a focus.  In part it’s because there’s a lot of technical things that go in to this point of my blog growth. Deep dives for hours at a time aren’t really in the cards right now. So.. the blog is on autopilot for the time being.

There’s lots of things I’d like to look into more – podcasting, being on podcasts, youtube etc. But time constraints don’t really allow for that. The in person time plus the back end time with editing etc make it prohibitive. I stick to writing because I can write relatively quickly (when I want to) and easily step away and come back as time allows.

I’ve been working on some things in the pharmacist world.  Honestly, I really would not have the time to pursue all the opportunities that have come up just with some of my pharmacist contacts.  And, not all of them make me much or any money. But it’s interesting and I’m meeting more people.

Which leads me back to another point and focus – my community and my network.

Community, Genuineness

I know I alluded to that in my previous post.  But, one of the things I am making a point of trying to focus on is being more available and open to the people around me.  I’ve been so used to doing things on my own that this is a new skill to build. But one I need.

If I want to take my life, professional and creative pursuits to the next level, I need to allow people in (and allow myself to give back to those people as well).

I fully recognize that right now, I’m more of a giver than a taker. But, trying to be there, be me and be genuine is enough right now. People are still getting to know me.

Since allowing myself to be a “taker” and not do it all on my own is a skill in and of itself I’m cultivating, it’s still an upward trend.

Being Me

And, I’m more comfortable being me. I just don’t have the time or energy to be anyone else.

For example, I shaved my head (in part so my son would feel better about losing his hair). I have wanted to shave my head for years and years. I’m so glad I did it, and I think I’ll keep doing it.

As a teen and in pharmacy school even, I had crazy hairstyles and colors. Now, I know in many settings these things are much more acceptable than they were when I was doing it. But pharmacy is still a pretty conservative group. Ok, when it comes to colored hair I’m also too lazy and don’t really care because it’s so common it’s not special to me anymore.

In regards to shaving my head, I’d been so worried about projecting the wrong image for so long. To an extent I tried to display the image that I thought was expected of me to go where I needed to go in my career. Now, I kind of don’t care. New focuses and priorities have made me sure that I will always find a way to at least get by. I may not be as rich with money as I hoped to be at one point, but I’m hoping to be richer in my friends and that is hopefully enough.

Releasing Expectations

I guess what I’m trying to get at here is, the more I give in to being myself and to being genuine the more connections I seem to make. Even if I’m still hella awkward in person – I find more genuine people to collect and call close to me.

It’s somewhat freeing to be in a position to just ride the wave and see where it takes you. To admit you may not reach the goals you once had. To be confident that in releasing expectations… things will turn out ok.

Few expectations, few let downs has often been my parenting mantra. I’ve loved the journey of being a parent. Aside from the obvious of cancer, I’ve never worried about my son, or milestones. We take things easy and enjoy life. I don’t know why it took this to let me release my expectations for my future and try to appreciate life more as it comes.

Vague Goals for Life

In planning for the future, in some strange way, and guilty as it makes me feel to recognize it, in part, I think I am recognizing that I need to build a wider support network for myself than my small family can provide.  

That doesn’t just mean if things go bad with my son.  But just, when life returns to a normal of not living in hospitals.  This is a traumatic experience for the whole family. Though my son is young enough that he may recover from much of this without much memory, it’s different for the parents.

There’s an active component of what is likely PTSD (does it count as PTSD if it’s still going on?).  So, when things settle down, how will I cope without the hyperactivity? How will I focus the hypervigilant energy?

As much as I yearn for normal and to do nothing, I’m aware of the fact that it will take some time to “come down” and be able to enjoy the quiet again.  My brain will not be able to rest as easy as my body.

So, developing new friends, building my community, giving back to others and showing my value, I hope (when I sit down and dissect myself), will all hopefully give me the outlets I need to transition back to normal life.

And, as I’ve said before, I don’t expect normal life to ever look quite like what normal life looked like before.

I had already been seeking to provide a life that would allow time to be with my family and time to travel and follow creative pursuits.  That all stands now – but with greater urgency. Except, there is an added need now to make the connections and find ways to express the things I’ve learned and discovered on my journey.

Giving Back, Advocacy By Necessity:

This may sound selfish, but, it’s not even a desire to give back (yet).  Perhaps it is selfish – there are things I have been through that others will go through that I feel the need to speak on and improve.  Injustices, inadequacies, so many places where things fall short that the perspective of someone who has been through things and is vocal enough could seek to improve.

Conversely, I don’t want cancer to be what our life is about moving forward.  Not for me and not for my son. I want to get through this and make it just a small part of our story.  

While the fire is lit, I’m hoping to build the connections that can help me to grow. Find those to help me act as an outspoken, often educated, knowing advocate.  I enjoying helping to change and shape things, when life, time and energy allow. But, again, much of that is about the network you build and finding the outlets where your efforts can be best used.

What I’d want to do? What area to focus on?  That’s a bit more schizophrenic. There are so many pieces to me and my life.  I have no idea where I will go.

A normal life was never in the cards…

But, the “normal” of “normal people”, I just don’t feel is in the cards.  It never was… but the reminders of how short and precious life are, and that we need to live fully and love fully and find our place to thrive in the world… strangely enough, a cancer diagnosis has reinvigorated me.

That may sound strange, and indeed, I’m oft times exhausted, but sometimes the worst of situations inspire you to be your best.

So, that’s where I’m at.  I’m still searching. But I’m open.  And, I’m more open to failure on my search for that full life.  

I’m more open to asking for help. I’m more open to the fact that sometimes you have to flounder a bit to fall into the right net.


For the first post after my Son’s cancer diagnosis check here. To see the page dedicated to his cancer journey and ways to support our family, go HERE.

5 comments

  1. Why does it have to take a cancer scare, death in the family, or other similar event to make us appreciate the things that are really important in life? I struggle with this question often.

    I’m so glad that you have the opportunity to be with Uriah as much as possible. Truly genuine quality time with loved ones is what life is all about.

    I was having a bad day earlier in the week but when I saw your report about Uriah’s tumor shrinking it seriously changed my whole perspective on my day for the better. I know the little man has a lot of fighting to do still, but I can tell he’s up for the challenge.

    Much love from my family to yours.

    1. We all have our struggles. Perspectives don’t shift without a cause.

      That’s been an interesting thing to navigate as I’ve gone through phases of grief around this change in our lives. At first, I was downright irritated hearing people around me complain about the most mundane of irritants, are acting as if a trip to the ER for antibiotics for their winter cold and being stuck in the ER for 5 hours was the worst thing that had ever happened.

      One of those was my first day at work, within two weeks of the diagnosis. I’m a pharmacist, and I’m supposed to be empathetic, but, all I could do was keep a straight face and try not to roll my eyes when customers made big deals of nothing.

      Moving on, I’m more understanding of that people have no way to get it. And, I bite my tongue and refrain from reminding them of how good their bad is.

      I don’t expect to really make people understand our situation, and I certainly don’t expect to inspire people to stop their complaining and trivial things. We’ve all got something bad to deal with… and lets just hope that the worst part of someones year is when they spent 5 hours in the emergency room.

      What I DO hope is to remind people to live to the fullest and appreciate… so, I’m glad I’m helping you there. Thanks for stopping by.

  2. Thanks for sharing your story. I can relate as my 2 year old got leukemia when my premature newborn twins were born. She survived. I could never understand it either when people would “stress” over such unimportant daily things when my world was upside-down.
    You will have a different perspective than most people for the rest of your life – it changes us as people.
    I believe ptsd is a real factor definitely! About 5 years after all my kids were married was a great “crying” period for me. Funny how that is such a delayed effect. We always think we will deal with it later and just carry on/be “strong” while it is happening.

    I admire your ability to write about it so clearly. I am also glad you can spend so much precious time with your beautiful son. Many best wishes for your family,
    Robin

    1. Wow. That sounds unimaginably hard. It’s difficult enough for me with one child.. you were dealing with 3 sick babies at once and trying to care for yourself.

      But, here you are today and you got through it. Thanks for sharing.

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