Overwhelmed

So, here we are again. The beginning of a new month, you awaiting to read what I have to say of my “adventures” from the past 30 days and me sitting here at my tablet unsure of how to start. There has definitely been a lot to say the least, I’m going to try and inform you on as much as I can remember, but just be patient as you are all aware I do have a little injury to my noggin. I’ve been trying to knock out one of these for a little while now but it just hasn’t made any sense to me, and for those of you who’ve read my blogs before you know my words have a way of flowing together fairly well, but whenever I’ve made a draft trying to write, the words didn’t flow together nicely at all so it didn’t seem like the right or proper time to post. That being said I apologize if this ends up being quite long, like the title suggests it’s been quite the month let me tell you (Which I will, ’tis but why you are here 😉) So yeah, an interesting, busy, and overwhelming month. Let’s dive right in shall we?

To start off, at the end of March we took a trip down to Banff to watch my baby sister play her last and finally minor hockey game, I cried; but who are we kidding I cry at everything now so nothing out of the ordinary there. After that I went home with my mom for about two weeks, on our drive back we stopped and picked up my little sister’s grad dress, to my surprise this time I did not cry. However on our way out of the mall I got a phone call from the Kelowna Cancer Center regarding a few appointments, we were super happy to hear that I had finally been put into the system so I could get a treatment plan put in place. The two weeks I was back were really good, I got to see lots of family as well as my very best friend, I’m not going to lie though those two weeks kicked my ass, I was utterly EXHAUSTED when I got home. Some good news as well, I didn’t have any seizures while I was over in Alberta either! Thankfully, since I was a little nervous considering the last time I was there we didn’t even know about my little hitchhiker friend and how he made my symptoms ten times worse; but it went swell until I got home and I guess came down from all of the excitement and since I was back in my familiar environment I had one, not bad of course as they normally aren’t for me. That being said however I have monthly video meetings with my neurologist and he checks in on me and my seizure activity and how my medications work for me, if I continue on with seizing I up my dose on the meds I already take or get prescribed another… Needless to say I got prescribed another, which makes that a total of 3 anti seizure medications now.

Right as I flew back home though I only had the weekend to chill out and recoup before Monday was FINALLY the time for my first appointment at the cancer clinic. Now I always am prepared, I have my notebook with my questions, my hospital paperwork (just in case of course) as well as all of the information they gave me, but I still didn’t feel like I was prepared enough; even though coincidentally I knew exactly what to expect out of this first appointment. Now I met with my Radiation Oncologist first, very nice man, very attentive, very informative, and I feel very comfortable with him as I do with everyone else who has been apart of my team. I had a bunch of questions for him but he answered most of them in the briefing before I even got a chance to ask them, the only question I had left for him was a very important question for me, others may disagree but for me, very important; “Am I still able to get a tattoo while undergoing my radiation treatment or is that taboo until afterwards like an MRI?” He kind of laughed slightly as I could hear my mother rolling her eyes over the phone but kindly said it is no problem and won’t have an effect, I was pretty happy considering I would like to get it this month and May being brain cancer awareness month I was planning on getting a Grey ribbon on my shoulder, and nobody can get mad at this tattoo because it is for everyone who has/ has gone through brain cancer like myself, and let’s be honest is someone really going to get mad at a cancer tattoo? Especially if it’s for yourself. Kind of a great excuse for a new one I would say!

Anyways! SQUIRREL! My bad, remember when I said you’d need some patients with me, now would be that time to bring it out if you haven’t already. So back to the cancer clinic, I was told I’d be doing 30 rounds of radiation which is 6 weeks straight Monday to Friday, not sure what time each day however I do know that the amount of radiation I will be getting each session is only 3 minutes worth, which according to the radiologist is quite a bit; but in order to tackle this pesky little thing in my noggin that is what they figure best and they are the specialists right so obvi they know what to do. I will be starting the first week of June so at least I’ll have something to do to fill my time this summer, at least I get my weekends. I’ve been told, as well as I’ve heard from others who’ve done radiation I shouldn’t feel any effects until the last few sessions when my body is trying to heal, then I will be plagued with more of what they describe as FATIGUE. Thankfully however with starting in June, I am able to attend my baby sisters grad and not have to worry about taking away from her day too much. Sadly though, and I’ve already expressed this to my sister I really don’t want to take away from her day in any way but she said either way people are going to ask me how I am and talk to me about how I’m doing and my treatment plan because they all care and that is just what comes with being sick, but if it were possible for me to start earlier she encouraged me to do it because the best thing I can do for her is get better and that is what she wants for me; talk about reversed roles, I’m the big sister so if anyone should be looking out for anyone it should be switched around. The positive thing though is that I am able to be there for her, and I’ll be there for her on many more significant days to come.

About a week after my appointment with my radiation oncologist I was back at the cancer center for an appointment with my medical oncologist, who is essentially my chemotherapy oncologist. Now I was a little less prepared for this appointment because I didn’t really know what to ask, my other oncologist already explained to me slightly that I would be doing my radiation then a months rest and then I would go on with the chemo once a month for 6 months (not quite the case) I thought I had a pretty good general idea of what to expect, but I felt totally unprepared and honestly overwhelmed, it was a lot to go through, a lot of information to process, and my poor little brain had already had a hard go. Nether the less the medical oncologist was the sweetest, most soft spoken, compassionate lady; she has a very small presence to her but somehow that is comforting to me, maybe because she reminds me of my great grandma, yup totally what it is, so for my Johnson clan picture grandma J as a sweet little compassionate oncologist. Anyways! She told me that after my 6 weeks of radiation and 4 weeks rest I am due for a 12 cycle chemotherapy treatment plan, which is just a fancy way of saying I’m in for a years worth of chemo my first go, but! I will be taking a pill (provided by the clinic’s pharmacy) for 5 nights straight out of one month, not bad. I take it at bed time only and then for the rest of the month I guess I just see how I feel, I will be given an anti nausea pill if needed and will of course have to go for regular blood work. With this type of chemo I will not experience any hair loss, so if I want to try and grow it out after radiation (if it will) I can, but I do kind of like how I look with a buzz; even though sometimes I get sad when I look back on old photos of myself with my long beautiful burgundy hair.

Something I really really struggled with this month though was having to make a super difficult decision that goes hand in hand with moving forward with my treatment. I had to decide on whether or not I was going to have a back up plan for my future regarding my eggs, now as a young woman who might want kids in the future it’s definitely a huge thing to take into consideration since this specific chemotherapy I will be on does in fact target the eggs and could very well cause me to be infertile. For everyone who knows me knows this is something that would put me through the ringer because I do in fact want children in my future and I love kids, I’m really good with kids and I have that motherly side to me so obviously why shouldn’t I right, plus I’m always the mom friend making sure everyone is looked after and safe, I think I’d make a really good mom one day. Having to make a decision like this was killer, and if you haven’t already put the pieces together I didn’t go through with a back up plan, it was too much money, not enough time, and frankly not worth it enough so my gut told me to say “fuck it and risk it” and that’s exactly what I’m doing, I’m taking a chance and risking it, now time will only tell if I am able to have children on my own; but if I’m not that’s okay, there are plenty of more options out there, this will just have to be another bump in life I will overcome, and I think by then I will be a pro at overcoming these stupid bumps.

Well I think that pretty much covers it, maybe it wasn’t too much but boy did it seem like a long month. For the time being now I guess I’ll just be getting some prep work done for my radiation, maybe getting a new tattoo, seeing a few of you at my sister’s grad, buzzing my hair again (by the way, surprise, did it again!) or who knows what I’ll be up to, it varies from day to day. Some days I get the motivation to bake, some days I only get the want to do basic chores, some days I clean the whole house! Some days I feel so sick I don’t get out of bed, or if I do manage to get to the living room I end up migrating to the floor cause that feels like the only comfortable spot and at that point I’ve given up, there’s no coming back once you’ve gone to the floor. Despite all that I am doing okay though, I’m always in good spirits and there is always something in a day to make it good. These next few months might be a bit more dull but I’m going to try my best to still keep myself in the highest of spirits that I can, after all that’s who I am, an optimist who is always smiling no matter what life has to throw at her.