Fast Forward

 

June 4th, 2023 was the last time I’ve written anything. I got lucky. I didn’t need the chemo IV infusions. I was able to take the pill for the following 6 months, however the dose was concentrated and much higher, going up again at the 3 month mark. Each month, for 5 consecutive days, I would take the chemo pill. It knocked me down pretty hard. I would just start to rebound after my dose, weeks later, and have to get ready to start the next round of chemo. By the time my dose was upped again in October, there was no comeback before starting the next dose. Permanently exhausted and not always with it, I struggled bad. 

The summer was long and hot and the sun wanted to kill me. I felt like I was always surviving in the level of Super Mario where the sun chases you. The humidity and heat waves in general made me physically and violently sick. I turned to marijuana to get me through everything and that was the only time I would go outside during the summer, unless the sun was down and I could breathe. I definitely missed out this year and it saddens me still.

But I think what has been the hardest for me is that this disease is so isolating and lonely. We’ve had a tremendous amount of community support and family support, however, I often found myself without my friends and even close family members. Those who promised to spend as much time with me as possible, had their lives to live too. Unfortunately this is something I was told by those closest to me, but I had to stop myself and remind myself that they have their own lives too. And I know my situation can be very depressing. I’ve had to learn to have patience and understanding. I struggled with negative feelings about this for a while. And it took some time and reminding from my husband. When I started this journey, my mantra became “peace, love and positivity”. I no longer have these negative feelings because I recognize that everyone’s lives keep moving too.

Once the kids went back to school, and Jacob finally went back to work, my days got even lonelier. I became obsessive over my bead art. It was all I did during treatment. I didn’t have much energy to do any amount of housework so I chose one chore daily which was cooking supper, and if I was able to do more I would, but otherwise, I sat and put beads on pegs. Jacob and I had talked about getting another puppy, even went so far as to check out a breeder for pugs, but we both decided that the new year would be best as I would likely be feeling better by then. So I went back to beading. I had two craft shows coming up.

Introducing, the one and only Rona, or Covid if you will. There went my first craft show. And let me say, when I said I was obsessive with the beading projects, I mean that we have 3 rooms in this house that either house current projects, finished projects or packaged products and supplies. Losing out on the biggest of my two craft shows was devastating. It was the show I had anticipated to be the most successful and I was crushed and defeated. I put my focus into getting ready for Christmas instead. I was depressed from missing the show and needed some joy and Christmas brings joy. 

I had everything bought and in our home before December. By December 5th I had everything wrapped. Christmas was completely ready. The halls were decked and there was nothing left to do. My husband put the focus on wanting to make sure the house was perfect so I spent the following days doing some extra cleaning as I could. I was on my last round of chemo. I was scheduled to take my last dose on December 9th. 

December 8th, everyone was hanging out downstairs. And we have teenagers so that was weird in itself. Jacob was home from work for the weekend. I saw lights in our driveway from a truck that I didn’t recognize. Jacob told me to answer the door, which I honestly not something I usually do anymore so I had no idea what was going on. Confused and a little suspicious, I opened the door.

There was a lady standing there, and I knew I had seen her somewhere but I just couldn’t place it. She asked if she had the right addressed and then she asked me if I was Riley. I said yes and she stood aside. I was looking at a little boy who was holding out a pug puppy. Not just any pug puppy, but the exact one that I had fallen in love with from the breeder we had looked at. I didn’t even ask her, I just jumped on her and hugged her and cried. One of my biggest dreams had come true. Green boy was mine.

A little back story. I love pugs. I have for a very long time. I never did much for sports as a kid. I was a music festival kid. I loved the arts. There was one music festival when I was in middle school. I believe I was in 8th grade. The adjudicator was awesome but the best part was her pug that sat in her purse on her lap the whole time. From that instance I became obsessed. Their squishy faces and snorts brought me so much laughter that I would cry. And this was just from watching videos of them online! Jacob has known since we got together, how much I wanted to have my own pug. It was just never feasible for us as a couple or as a family once we had kids. But now that we were in our situation, with me at home on disability, by myself, this made it the perfect time.

The kids were just as surprised and excited as I was. Natalie cried as well. Jacob started bringing things in for the puppy as we were all loving the new puppy. I was the happiest I had been since this shit show started. His first night he only got up twice. The next day, I had settled on the name Toby. That was the name the kids liked the most. And to be fair, he looks like a Toby. However, had I known he was such a potato, I would have called him Spud. He is honestly the best thing that my husband could’ve ever done for me. He will never be able to top this Christmas. Unless he gets me another one, of course.

I spent over a week sleeping on the couch so I could kennel train him. He was fine in there during the day, but at night time, even with the lights from the tree and the tv playing, he could not stand to be away from me. He had taken a complete shine to me. He knew who mama was. After 9 nights, the last 3 of which were completely exhausting, I gave up and took him to bed with me.  As long as I have him out to pee around 11pm, we make it through the night with no accidents.

We had all the plans made for Christmas. One evening with the in-laws and cousin time with a pot luck dinner and gingerbread house decorating, followed by looking at lights. Christmas Eve we had an open door policy for anyone wanting to stop in, and we had a bunch of snack foods and played a game with the kids. They opened their matching Elf jammies and Jacob ad I opened our gifts. My main present was Toby, of course, but I had gotten Jacob some pretty neat stuff, including a smoker. He’s wanted one for a long time so I feel like I made the right choice. 

Christmas morning was really chill. With both sets of grandparents here to watch them open presents, this was the first year it wasn’t complete chaos; Must be because of how old they are now. We followed up with dinner with my family at my parent’s house. Boxing Day was quiet aside from a visit with Jake’s grandparents.

New Years Eve was spent differently for us. We usually spend it at home with tons of food and the kids and playing board games and watching movies. This year we spent it with friends of ours who live down the road. In our 18 years together, this was the first time Jacob and I didn’t spend New Years at work or at home. We had a great time and are looking forward to spending time with their family again.

2023 was easily the worst year of my life. We found out I had a brain tumour. I had to leave my job. I lost my grandmother, my last living grandparent. The day after her funeral we found out I had inoperable brain cancer which needed treatments. I had a spinal tap, which ended up being the most traumatizing thing I have ever gone through. I started steroids, radiation, chemo. I lost my hair. I felt the worst I ever had. I lost my sense of self. I lost me.

2024, I’m coming back. I have my new fur baby. My next MRI is in 9 days. I see the chemo doctor the following week. I’ve been told that I should be rewarded with a break. So instead of making “resolutions” this year, I’m just going to focus on the things that make me happy and the things that make my husband and kids happy as well. I am so blessed to have made it through this last year without any complications on top of my situation. 

For anyone who has been here for me during my journey, thank you from the bottom of my heart. Even if you only visited once in a blue moon, you still had my back so thank you. I will continue this blog for this journey, but will be starting another to follow the things in life that bring me joy. And writing is one of them. Thanks for following along so far guys! I couldn’t have gotten through this last year without you. Peace and love,

Riley Alexander

Bipolar with Brain Cancer