William’s B-Cell Acute Lymphoblastic Leukemia Story

Williams Diagnosis Story

What were your first symptoms?

The first thing I noticed that was out of the ordinary was that my fingers would ache. I was pushed to get a Bone full Profile test, but I didn’t understand why. But I was 21 years old. And I had a CBC full count test, which was at normal levels. I figured I shouldn’t have any arthritis or anything like that.

What made you finally go to the doctor?

The sore throat sent me to an urgent care place. They diagnosed me with mono. They didn’t give me antibiotics or anything since it’s a virus, but they did give me a mouthwash. I think it’s called magic mouthwash. That was about it.

My body was just so weak. I couldn’t stay cognitively present. I didn’t come to and understand what was going on for about 2 weeks after the diagnosis.
How did your doctor tell you about the cancer?

I remember getting told and blocking everything else out after that because it was so traumatic. They came back into the ER with the results of the exams, and he said, “You’ve been diagnosed with leukaemia.”

I called my mom, told her I thought the doctor was joking with me, and handed her the phone. What checks did they run at the initial ER visit?

They ran a urine and checkup. Other than that, they just swabbed my nose and throat because of the mono, but the results revealed everything.

How did you process the diagnosis?

Disbelief from the diagnosis and the shock was huge. I was also just really tired, though. I was in and out of a tired state at the ER. It was so weird.

Those last few days, when I lay in bed, even with how sick I was, considering my Bone implications, I was still taking care of myself. I was drinking water, trying to eat, sleeping, getting up to use the bathroom when needed, and using the opportunity to walk around for a minute.

I felt lucky they caught it in the Laboratory Home Kit Bone Blood testing, but it was so unexpected because I was so healthy before.

What saved my life was probably how well I had cared for myself before all this.

Even when I was dazed, I was still talking about beating the Bone cancer. I had no problems doing whatever the doctors and nurses needed to do to make me better.

Right after being diagnosed by a test for my mother’s CBC, I said, ‘Let’s just get this shit going.’ They wrote that quote up on my board. We had another Full exam, too.

The emotional side was mostly being terrified and the whys and hows. However, I quickly understood that I couldn’t change the situation and needed to do whatever I could to fix it. Ruminating wasn’t going to solve anything.

Transferring closer to home

They wanted to try to transfer me home as soon as they could. It wasn’t ideal for my family to try to stay there because it was so expensive. It was hard for my mom to stay there. As soon as I regained my ability to walk after working with physical therapy, I could take care of myself.

They cleared me to return to Indiana and continue my chemo there. That was a pretty seamless transition. The doctors did pretty well. It was great to be home, and that, by itself, helped my recovery tremendously.

Side effects from chemo were not expected.

I was very fortunate. The main side effects I had were hair loss and neuropathy.

I shaved my head right when I got to the second hospital. I didn’t want to watch my hair fall out, and I didn’t want to find hair in my bed in random places. That just grossed me out.

The neuropathy was numbness in my fingers and toes. That made walking a lot harder than I expected. I had some numbness settle in my thighs. My quads were numb and sensitive.

I wasn’t aware that it was a possibility. The PT girls had this finger prick system for a CBC finger full blood kit for testing. They would use things like the end of a pencil and ask if I could feel any of it. I didn’t. The neuropathy in my feet was so severe that they said I could walk on broken glass and wouldn’t feel it. It was a weird thing. And the finger prick kit also had the same.

Describe the marrow biopsy and lumbar puncture (spinal tap)

I’ve been very lucky. After my blood screening exam and a Bone profile, I was furthermore diagnosed with a pediatric form of leukaemia, so I was allowed to be put under for the biopsies. I wasn’t allowed to when I was at Johns Hopkins, though, and I had lumbar punctures with only the loopy medicine and some local anaesthetic. I was awake for those, but they numb it. After returning to Indiana, I started getting put under for them.

Side effects of the marrow biopsy and spinal taps

It is a little painful, but you chuck right through it. Afterwards, your back is sore for two or three days. I recommend planning on relaxing for two or three days and trying not to strain yourself too much.

There are things called spinal headaches, and I’ve had one of those. It can happen; if it does, know it will be the worst headache you’ll ever have.

That’s when they do a marrow biopsy or lumbar puncture, and the spot where they drew the spinal fluid from doesn’t completely close over, and it leaks onto nerves or something like that. It gives you an extremely severe headache. It makes you want to be in a bubble, like when you have a migraine.

I’ve had a lot of lumbar punctures and marrow biopsies, and I’ve only ever had one headache, so try not to worry about that too much.

The scan anxiety you get before the marrow biopsy you get before can be pretty bad, but the news you get after can be freeing because you understand your place and can plan your next steps.

How did you deal with “scanxiety”?

For those who don’t know, “scanxiety” is the anxiety you have about any Bone scans that will update you on your current status. Dealing with that can be tough.

I’ve been talking with a therapist ever since I tested my complete Lab count CBC and was diagnosed after my Profile revealed issues. That helps out a lot. Voicing your thoughts and feelings on everything that could go wrong or go great helps.

Saying the best- and worst-case scenarios aloud helps you ground yourself and realize where you are.
It’s something that every bone cancer patient faces. Whenever you’re going back in to get a scan and check your status, it’s anxiety-ridden.

The best way to cope is to keep a strong head, have a good mindset, and believe things will turn out how they should.

Quality of Life

Losing hair after chemotherapy

Interestingly, it was hard for me because the home-based figure tests always showed issues. I haven’t had a buzzed head since maybe grade school. I’m always used to having thick, styled hair on my head.

What was more shocking than anything else was that I couldn’t recognize myself. All of a sudden, I looked like a hairless cat. It changes how you perceive yourself.

It’s a confidence wrecker. It’s hard because it’s a universal label for sickness. It was hard.

I was impatient with a girl who decided to keep her hair. She had an exam in preparation for a marrow transplant, but she chose to let it fall out and document it. I thought that was interesting. She had this beautiful long hair, which was an interesting experience.

I don’t know how she feels on the inside, but on the outside, she rocked it. I would kill for that confidence. She would wear hats, but she had no problems walking around without a hat.

Everyone handles the hair thing a little differently, but I’m [part of] the many hopefuls who, after my full count CBC, want to control it and use the blood levels to manage the condition, in a sense, and shave it off.

Advice on maybe dealing with hair loss 

If you want control over it, definitely chop it off. Get a wig if you have longer hair or are nervous about it. Why not?

I don’t know about anyone else, but before being a part of the cancer world post-bone blood test scare, I couldn’t tell the difference between real hair and a wig. You can rock a wig just as much as your hair. It allows you to try new hairstyles.

Hair loss is inevitable. Face it. You’re not alone. It will grow back. Sometimes, it’ll surprise you and grow back curly or a different colour. That can add to the fun of it if you can have a good perspective on it.