Young Adult Cancer is very unique.
And Young Adult Cancer sucks really bad.
Think about it.
The age or stage in your life when you are diagnosed with cancer or any other awful disease, will affect people differently, cause more problems, make certain situations easier depending on how old you are and what you’re going through. If this is not making sense to you soon, it will…
I asked my oncologist the other day, “So, random question Dr. B,” I said, “do you have a list of patients who are like your ‘headaches’? Or that you’re always struggling with?”
“Oh you made that list a long time ago,” he laughed. “I definitely didn’t see you having to overcome this much,” he added.
I smiled and nodded… “me either.”
And it’s the truth, I’m a pretty rare case compared to the majority of his patients (who are mostly 60s and up.
Medical Issues Since Cancer Diagnosis
- I was only 27 years old and 29 weeks pregnant when I found out I had cancer. (I’d never thought a young adult who is pregnant could get cancer. Cancer and pregnancy? They never crossed my mind or I’d never heard of it. Such a shocker there too.
- I had my baby all natural—no drugs—at 30 weeks pregnant so I could start treatment as soon as possible.
- I had a very strong mutation (FLT3) that’s very aggressive and many who have this mutation see relapse time and time again.
- Four days after giving birth—and dealing with all my lady parts trying to heal and breast milk I was trying to get out before chemo–I started treatment in a building across where my preemie baby boy was.
- Baby Bex in the NICU and I couldn’t see or hold him because I was sick.
- Reached remission after first treatment.
- Completed rounds 2,3, and 4.
- Discovered my sister was a complete mismatch and had to use an anonymous donor.
- Started final chemo before stem cell transplant in April 2015.
- In hospital for 30+ days.
- Four days later (after being home), gallbladder attack sends me to hospital—and it’s removed.
- I get pneumonia several times.
- I get GVHD of the gut.
- I developed a Blood clot in port makes me swell like a balloon. Seriously, y’all. Check out the pictures, especially if you’re having a bad day. It will make your day feel “not-so-bad.”
- Had a brutal sinus surgery.
- Broke tailbone while in the hospital.
- Experienced extreme depression. Read about, “Why I Wanted To Kill Myself” here.
- Developed SVC syndrome in 2016
- A blood clot near the heart was discovered in the second largest vein that pumps blood to and fro heart to upper extremities.
- No photopheresis could be done after discovering clot.
- Get Pneumonia again for the, uh, well… I can’t even remember how many times I’ve had it.
- GVHD of muscles flares up.
And that’s just what I can remember off the top of my head. So, medically, you could definitely say I am a rare and special case.
This Is Where Young Adult Cancer Gets Unique
This is the chapter of our lives that I think most would call the “middle part of our story.” But really, it is still part of the beginning. Perhaps it’s the end of the beginning chapter. And during this time, most young adults are going to college, working full-time, getting married, having children, traveling, deciding if you want to have more children, partying, discovering their career-directions and actions, etc. And they aren’t having to worry about young adult cancer.
I still wanted a career. I still wanted the option to have another child if we wanted to. I still wanted to be the active mom who gets down on the floor playing and wrestling with her kids. I still wanted to be the mom in the stands hollering and cheering for her child who is wishing I’d just shut up. I still want those things, but those were ripped from me, taken away by some funky, stupid mutation of cells in my marrow.
So now, my life as a young adult, my time as a mother to young kids will be forever glued to the time I had cancer and to the most difficult part of my life—after cancer. It will be attached to words I dislike but in all realness describe my life currently—disconnected, tired, moody, full of anxiety, frustration, pain, negative, stressful, hopeless.
Immunosuppressed Patients/Survivors Have To Use Extreme Caution
When it comes to a “typical” AML patient, transplant patient (of any kind), or immunosuppressed patient, extreme caution is advised. We, people who are immunosuppressed, do not have a normal defense system that will fight off the germs that make us sick.
Immunosuppressed patients have to look out for many things and be aware of our surroundings.
At one point my doctor was like don’t be around anyone who sneezes. WTF?, I thought.
“If they sneeze, you need to go. Could be allergies or a cold, but you may end up in the hospital,” he warned.
It was the same with someone has a cold sore on their lip, or being around cats or kitty litter.
“Stay AWAY!” They’d caution.
But I didn’t know one thing. I didn’t know that I’d have to be away from my kids because of my immune-suppression.
Of course, I knew if they were sick or feverish, I needed to steer clear as much as possible, but I had no clue about staying away when they get their vaccinations, especially if they are live vaccines.
When you receive a stem cell transplant, the chemo completely wipes out your immune system—which is why I had to be in the hospital so long (for my induction chemo), because it’s a more controlled environment and I could remain in isolation.
The whole “terminating my original immune system thing” also meant it erases the vaccinations I’d received as a child as well.
So, I have to get all the shots again—just like my kids are getting from newborn and up.
The Sitch Young Adult Cancer Survivors/Patients Have To Be Cautious About If They Have Or Are Around Kids A Lot
My oldest son, Brody, turned five this February, which means kindergarten is just in a few weeks. They grow too fast!
We had to find a time when I could be away from the kids (like out of the house away) so they could get caught up on their vaccines and Brody could officially be enrolled in school.
First, my docs were like you’ll have to be away from them for about a month or so. Say what?
Then it changed to 2-3 weeks, then it became a week, then it was like you’ll be OK “just don’t let them touch you.” Well, I have a 2-year-old and I’m pretty sure he won’t understand that (he was getting his shots too).
Then they said maybe a week or just a few days.
Obviously, I’m not their “usual” case because I’m a young adult with cancer. They weren’t exactly sure how cautious they needed to be with this. They normally don’t have to worry about young children being around elderly folk as much.
So, this means every time someone has a baby, I’m having to ask about their recent shots. I need to know when they last had shots and what they were to see if I can be around them safely–all because I’m a young adult cancer survivor. And, that makes me feel shitty as a person. It’s like saying: “I really want to see your baby, hand over his shot records first.” I’ve never really asked for shot records but that’s what it feels like I’m doing.
Two weekends ago, Klay finally took the boys to get their shots on a Friday. I went to my mom’s for the weekend and came back to be with them Monday morning.
Beckham needed three shots (one even kind of bent when they put it in, Klay said). He cried a little, and Klay picked him up and he was fine.
Brody, my drama king, needed just one shot (I think it was a mix of two shots in one syringe) and bawled until they got out to the car. Klay said he acted like his leg was going to fall off.
That’s about right; my five-year-old is definitely the dramatic one. I don’t know who he gets that from!? 🙂
Some Funny Stats About My Kids
My preemie, Bex, is in the 85% in his height, and Brody is in the 7th percentile.
Bex’s head was also in the 80’s percentage for his head size.
Both of my kids have big noggins. They’ve run into things over the years, I am surprised they don’t have any brain damage. Well, the jury could still be out on that one with the way they act sometimes.
So it sucks having cancer, then having varying health issues after “beating” cancer, but it’s even more shitty when it screws with your time with your family, especially with the kids.
They had a great time with their dad of course! Klay took them to eat and bowling. But I could tell they missed mama when I came home too.
Young Adult Cancer Really Does Suck
Needless to say, young adult cancer is much different than having cancer as a child or when you’re old and gray. I’m not saying those situations aren’t difficult or are less difficult than my sitch. Every situation has its own unique problems related to the stage in life when they’re diagnosed and/or receive treatment.
What I’ve learned from young adult cancer is that life weighs heavy on me emotionally because I’m still in my 20’s. So, I’m still young enough to want to do fun things—but my GVHD of my muscles restricts me from doing normal physical things a 29-year-old would be doing. I’m still young enough to have a career if I want one. But I can’t work anywhere because I can’t drive. I can’t exercise or go for a jog like I used to just a few years ago. I can’t do most things young adults can and should be doing.
How Young Adult Cancer Changed Me As A Mom & Wife
On top of all that, I’m still a mother–another difficult aspect of young adult cancer. I can’t do any motherly things anymore like other moms my age can. For example, I can’t just take Brody school shopping, go on an impromptu grocery shopping trip, put Beckham in bed (cause I can’t pick him up), cook, clean, do the laundry, etc.
And I can’t be the wife and partner I want to be for Klay. I wish I could but I can’t. He’s doing everything for me and the boys. I want to help ease his stress. I want to bring in some income. I want to do anything and everything to keep him happy and take things off his shoulders.
Young adult cancer sucks. Cancer sucks.
When will it get better?
This young adult cancer survivor needs someone to cut her some slack,