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How I live life with low neutrophils

Hey everyone, my name is Blair!

First, I want to give a disclaimer that what I’m about to write about should not be taken as any kind of advice. It’s solely how I’ve gone about doing things and you should always talk to your doctor about what they think is safe or not.

In 2016, when I was 21, I was diagnosed with a blood cancer called Myelodysplastic Syndrome (MDS). For those of you who don’t know, MDS is very similar to Acute Myeloid Leukemia (AML), and in some people, MDS progresses into AML. I was one of those unlucky people but that’s a story for another time. After six months of being in and out of the hospital, long periods of waiting, and a bone marrow transplant in January 2017, I was cancer free. Unfortunately, eight months later I was told my MDS had come back.

Before my bone marrow transplant, I had given up on trying to live life. I felt extremely nauseated all the time, I stopped eating and drinking because I felt so sick, and I spent all day in bed. Doing this would make me even more sick and I would end up back in the hospital. They would get me back to feeling alright and I would go home and crash again.

In October 2017, two days after my 23rd birthday, when I was told “Blair, your cancer is back,” I refused to live the life I had before my transplant. I thought if the new treatment did not work and my time was going to be limited I am going to live the best life I could!

I have gotten a chemo called Azacitidine every six weeks for five days straight for over two years now. Aza is a very light chemo and I am able to recover from it fairly quickly and go back to living a good life. Fortunately, the Aza has done an amazing job at keeping the MDS under control. Unfortunately, it also does an amazing job at killing my blood cells — especially my neutrophils. I’ve had to figure out how to live the best life I can with my neutrophils being low while also keeping myself safe.

Neutrophils are blood cells that help fight infection. A healthy person’s neutrophil counts are 2.0 and above. If you have counts from 1.9-0.6 you’re at a much higher risk of getting an infection, and infections like a cold or flu can become severe and result in hospitalization. If your neutrophils are 0.5 and below, they are deemed critical, and not only are you at an extreme risk for getting an external infection, but you are also at a very high risk for developing an opportunistic infection. That’s when your body’s natural bacteria causes an infection and they can be very severe. That’s the way my doctors explained to me. Over the last two years, my body has gotten used to my chemo and my neutrophil counts range from 0.2-1.5, depending on how long it’s been since my last chemo dose. However, for a really long time, my counts were always below 0.5 which was in contradiction with how I still wanted to live my life. I didn’t want to put myself in a safety bubble.

The first thing I try my best to overcome is the constant fear of getting an infection. When my counts are below 0.5, I am always worried about my body turning on itself and giving me a severe infection. Every ache and pain, every slightly sore throat, and every time I feel a bit warm causes intense worry of having an infection somewhere in my body. I’ve had to learn to deal with this fear and do things to calm myself down. One of the things I do is take my temperature. When I see that I have a normal temperature, it does a lot to relax me. I also try my best to actively distract myself. I do this by getting out of the house and doing something fun or playing a video game that distracts my mind from the negative thoughts. Finally, when my anxiety is severe, I take a dose of marijuana CBD oil which works wonders and does a great job of controlling my anxiety. I cannot recommend it enough.

The second thing I’ve had to learn to do is balancing risks versus rewards when it comes to leaving the house. This mostly comes into play when I want to do things in places where there are a lot of potentially sick people. A current example — with it being the Christmas season — is when I want to go to the mall to get my family presents. I considered going on Saturday, but I had to figure out the risks and rewards of doing that. The reward would be I have all of my family’s presents, but the risk is going to a packed mall with thousands of potentially sick people. In this case, the risk far outweighed the reward and I decided not to go and wait for a week day when the mall would be less busy.

Another situation that happened recently was when I went to the Teddy Bear Toss with my girlfriend. The Teddy Bear Toss is an event run by the Calgary Hitmen hockey team at the major arena in Calgary. People bring teddy bears, and after the Hitmen score their first goal, everyone throws their bears onto the ice. The bears will be donated to Calgary kids organizations around the city. My girlfriend had tickets from work and I had to decide if I wanted to go. The risk was I would be packed into a relatively small area with 17,000 other people who could be carrying all kinds of infections. The reward was that I would have a lot of fun and have an experience that I would remember for a long time. I decided to go because the reward of having an amazing memory with my girlfriend outweighed the risk by a lot.

I’ve also had to learn how to say no to people when I don’t think the risk is worth the reward. It’s really hard to do, but if someone gets upset with you because you don’t feel safe doing it, they are not the kind of people you want in your life.

The third thing I’ve had to learn is managing the risk and how to keep myself safe in a risky situation. The main way I do this is by using what I fondly refer to as my pocket hand sanitizer. If I am out of the house, I will always have a bottle of hand sanitizer in my pocket or in my backpack, which I also always have on me. Anytime I need to eat or scratch my face, I always use hand sanitizer first.

Another major risk I had to take recently was flying to Toronto for YACCtivist training. Before my flight, I read that you are significantly more likely to catch a cold on a flight than most other places. This was a major concern for me so I did some research, consulted the YACC community, and decided to buy a heavy-duty hospital mask to wear the whole flight. I also learned that you can bring Lysol wipes and let the flight attendants know you need to board the flight with accessibility boarding to clean your seat area. They are more than happy to accommodate. A disclaimer: I am definitely still learning how to handle having constantly low neutrophils. I am finding I have started to fixate on the cleanliness of certain things around me and I have started taking being clean to extremes. I need to learn the balance of what’s an acceptable level of dirtiness.

The final and hardest thing I’ve had to learn is that there is nothing I can do to control my neutrophils. When you have low red blood cells and platelets you can receive a transfusion of them and it will boost your levels (for a short time, at least). With neutrophils, there is only an injection and my doctor recommended we don’t do them unless I get a severe infection so my body does not get used to it. I have had to come to accept there is nothing I can do about my neutrophils and I don’t need to worry about them all the time. One of my favourite quotes is, “worrying means you suffer twice” by Newt Scamander, Fantastic Beasts And Where To Find Them. This quote has followed me throughout my entire cancer journey and I make sure to recite it to myself whenever my anxiety starts to get out of control.

Thank you for taking the time to read my blog! I would love to know if any of you have constantly low neutrophils and how you go about managing risks. Also, if any of you have found ways to help your surviving neutrophils out, I would love to hear how you do it!

[EDITOR’S NOTE: If you would like to connect directly with Blair, please email [email protected] and we will forward your message!]

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