Updated FAQs

How am I feeling?

Physically: Thankfully we found the tumour SO early that I have not had any serious symptoms such as loss of movement or seizures. But I get tired very easily, my thoughts at times are scattered, and I often feel spent. Anytime there is any swelling in the brain, tiredness can be expected.

I also have been put on a regimen of high-dose iron as my latest blood work showed my iron and haemoglobin are low, which is not what you want for surgery, especially for someone with a bleeding disorder. These pills make me feel SUPER sick and have an upset stomach daily, this has been such a challenge.

Emotionally: I am working through many emotions in therapy and am surrounded by a lot of love and support from the very few people in my inner circle; I am so grateful for them. There is also the financial stress of it all, I’m self-employed, and time off = no income; so this will be a big financial burden on our family. I am trying not to stress about this and focus on my health only, but that’s easier said than done.

How is Ananiah?

She is doing as well as can be expected. She has her good moments and bad moments, she feels scared and worried but she is also trying to focus on having a good school year. She’s been in therapy for months and has been working through her feelings. Telling her was one of the most heartbreaking moments of my life and I am grateful for the resource of having a great paediatric therapist and can’t stress enough how helpful she has been to this whole process.

How is Trevor?

He is also doing as well as can be expected. He is in full-blown protection mode with me, I would love to say this is the first time he’s had to be this way, but alas there have been a few times in our life he has assumed this role. He is being so strong for me and for Ananiah but his eyes give him away, he’s scared and anxious for this to be over. He also has a great therapist so I’m grateful for him to have that outlet.

How long will I be in the hospital?

They expect me to be in the ICU for a minimum of 5 days and then depending on how I’m doing I’ll be discharged to recover at home. I cannot stress this enough: I will not be accepting visitors at the hospital. Although people have great intentions: Impact is always greater than intentions; no matter how good intentions may be the impact will always matter more. And the impact of someone not respecting these wishes will be grave for me.

What will your recovery be like?

I have been told I’ll be off work and basically daily life for a minimum a month. I can expect to have headaches, some loss of the use of my right side (which will slowly come back), and extreme exhaustion. Not all of these may happen, but this is what I’ve been told to expect.

How invasive is the surgery?

Unfortunately, they can’t access my tumour through my nose as they can with some people, so I’ll be having a craniotomy which is highly intensive, has risks and is considered a serious surgery (all of which terrifies me; but it is what it is). I am super sad they will be shaving a section of my head, I know that in the grand scheme of it all this shouldn’t upset me, but it does and I am allowing myself to feel that.

After they remove it, you’ll be good right?

I wish. The reality is clean margins don’t really exist for brain tumours, you can remove extra tissue around a tumour say in your breast, but with the brain, they can’t do this. Cutting anything more than the tumour is going into needed brain tissue with the risk of permanent damage. My reality is: that this will likely grow back and I’ll be facing another surgery down the road. What we are hoping for is that the tumour doesn’t require chemo or radiation at this time so that the next time we have those at our disposal (radiation is a one-time thing, who knew?)

How long do you have to be on this new chemo drug?

Forever. If I ever come off of it, it will be because it is no longer keeping the tumour stable and then my team will have a different game plan (ie: another surgery or radiation + a different type of chemo). We won’t know for a few months if this medication stabilizes my tumour, but it is our daily hope and prayer that it does.

Are you seizure free?

Unfortunately not. My seizures are “controlled” meaning that I do not lose consciousness and I’m aware of what’s happening as they are happening. The combination of the two seizure medications I am on has them so “controlled” that they are contained to my right hand and arm. I lose control of my entire arm including my hand during, but the shaking is not violent in nature. They vary in severity at the nerve level and so sometimes they leave me sore for days and sometimes they do not; they always leave me mentally tired. I don’t ever know when they’re going to happen. They do have some common triggers for example: if I’m extremely tired or I’ve had a very long week, or something acutely stresses me or causes me anxiety, or something overwhelms/overstimulates me. But there’s been times where I’ve had a great day, and I’m well rested and calm, and they still happen. I’m averaging about one seizure every two weeks, sometimes they cluster meaning I have them multiple times in one week and then I’ll go 2 to 3 weeks without having one and sometimes I’ll just have one and then a few weeks later have another.

I’ve worked very, very, very hard to not let the fear of these happening stop me from living my life. It has not been an easy journey. I cannot stress this enough. The amount of cognitive daily therapy I’ve had to do has been like a full time job, just to get me to accept and surrender to not being in control of when they happen. They also mean I cannot drive and so that’s been a huge blow to my independence, and if you know me I am anything but dependant on people. I’ve always come and gone as I please, have always been a busy and self sufficient person, and now I have to rely on others to take me anywhere. I’ve had to work VERY hard to not let myself become resentful and bitter about this. I practice a lot of gratitude for the people in my life that I rely on, but I’m human (and a Latina) and sometimes I just want to smash stuff out of anger and frustration (kidding, but not really kidding at all).

The seizures are what they are, and I want to just live my life as full as I can. I am cautious and try to minimize the things that trigger them, but otherwise I’m out there: doing my daily housework, going to my meetings, taking Ananiah to the pool, going on walks, going to restaurants, etc.

Are you back to work?

Unfortunately, no. Because of the seizures and the roller coaster of trying to figure out the right medication for them, coupled with the fact that I thought I was going to have to do radiation and chemo combined, I decided not to put more stress on myself and return to work. However, it is my hope and my goal that this fall I will be back. A large component of my job has me on the road driving though which presents a problem, while I am self employed, the company that I do all my work for will accommodate something for me once I’m ready to return.

How is Ananiah?

She’s doing great! This has been a huge roller coaster for her and we have had many hard times and heartbreaking conversations. But she feeds off of my determination to not let this trial ruin this big beautiful life that we live and with the help of her therapist she has just blossomed in ways I could have never imagined. She had a fantastic school year, both academically and socially. She joined clubs that brought her joy and was a favourite amongst all the teachers who oversaw those clubs. I would like to think that she saw that keeping busy helped me, while also not pushing aside the emotions we need to deal with. So I know that she has had an outlet with her therapist as well as she would express to us constantly what her inner feelings were and she just sat with those feelings as needed. So I was very happy to see her so busy knowing that she wasn’t doing it to suppress what was going on. She was also at the pool once a week, trying for the third time to pass a very difficult level for her age group and I am happy to report that she passed! We both cried tears of joy while we hugged when she found out she passed. I think we both in that moment understood how much perseverance it took through such a difficult time for her to accomplish this. It is a moment I will never forget.

One incredible quote from her that I will never forget was when she said “Mommy I had failed the timing twice and he (her instructor) said he would give me one more shot. I started to swim and I thought ‘I can’t do this’ and then I told myself: ‘Ananiah get out of your head and into your body!’ and my limbs just started moving like I wasn’t controlling them. I wasn’t thinking about it. I was just doing it.” Well her mentality paid off because when she stopped her timed swim, she had shaved 20 seconds off her time and passed! I remain in constant awe of her.

How’s Trevor doing?

He has been our constant calm force this entire time. A lot has fallen on him that I can’t help with mainly driving me everywhere and walking Griffey. However, he doesn’t complain and he’s always let me heal (physically and mentally) at my own pace. We have a pretty good routine now I’ve been feeling well for months and I am back to being able to clean our house every day on a schedule plus I run all of our household’s admin work, while he’s working away at his computer. We sometimes get our ‘lunch breaks’ together, not often, but I am grateful for him being around and his calm energy. He also works under an amazing management team who have been an answer to many of my personal prayers, making sure he’s not overworked and making accommodations for him so he hasn’t had to miss any important medical appointments I have.