The Leukemia Diaries, Part 7 – On Adjusting
DISCLAIMER: I am sharing my experiences not because I believe I’m going through anything “super special” but because I have friends and family who are curious about what goes on during treatment, beyond the technical/medical aspect. I know that my case is just one in hundreds of thousands of others, but if my experience helps anyone – whether a curious creature or a newly-diagnosed AML patient or their worried parents – to understand that some things can be expected to happen during the course of treatment, then I have accomplished my goal in sharing these things.
My journey has been about plenty of adjusting. Instead of seeing it as an inconvenience, I like to think of it more as one big improvisation rehearsal of sorts. Don’t take it too seriously, but do learn from the first time something happens, because it’s highly likely it won’t be the last time it’ll happen during the treatment.
In the first round, I experienced many things for the first time. I faced one of my fears and underwent surgery to have a catheter implanted in my jugular to facilitate my meds. I DID NOT REGRET IT, and I would recommend the internal jugular (IJ) catheter if your doctor mentions it as an option. It allows for three access lines, one of which was exclusively for blood extractions, and it made my life so much easier. I’m not afraid of needles, but I do dislike the inconvenience of bruising at the extraction sites. The other lines were used for my medicines, transfusions, and IV nutrition when I needed it.
The catheter did come with its share of minor downsides. I found it ridiculously scary when the IV lines were tugged on even slightly, since my catheter and the lines were anchored to my neck. If you tend to roll around in your sleep, you’ll have to practically order your body to stay put. I learned to get comfortable in a number of positions that I felt were safe for both myself and my lines, and had to develop the discipline of moving slowly. When you’re feeling really sick and weak, this is easy to do. Once you’ve begun to regain your strength, it takes a little more self-control.
I recall one time that a nurse gave me medicine through my IV line while I was asleep. That was a bad idea, because I woke up gasping for air. In a split second, I’d felt like all the blood in my chest area receded right to my heart and it felt cold. That was legit terror on my end, and I think I scared my nurse, and my dad who was there at the time. This was at the beginning of my stay in my regular room, so she was around for the rest of my first round. She was always careful after that happened, and made sure I was at least half-awake and aware that I was receiving medicine. On my part, I became more alert of the times that my nurses would come in so I could somewhat wake myself up and be aware of when the meds were being given. I don’t think this kind of insane “chest-shrinking” sensation will happen to everybody, but I’m sharing this experience because it’s a possible reaction. A few seconds of deep breathing had me back to feeling normal.
I think the“skill” I really developed during the first round was learning to shake myself even half-awake and be aware of when needles were going into my IV lines or under my skin. Someone once came in in the middle of the night saying they had to take blood from two different sites for a blood test, and they weren’t authorized (I think) to take it from my IV line. They went through the usual extraction from the crook of my elbow, then proceeded to go to my foot. I’m glad I was awake enough for that, because if he’d done that while I was asleep, I’m sure I would’ve kicked hard and gotten myself hurt in the process.
The Changes In Other People
I used to complain about not getting to spend enough time with my parents, and although these aren’t the ideal circumstances, they’ve been spending more time with me now. <3 I’m definitely happy about that. It still feels weird, but it’s a good kind of weird.
Friends who I thought I lost along the way, and people who I don’t get to hang out with as much, have been coming out of the woodwork as well. Many of them came to donate blood (or attempt to), and signal boosted my dad’s post when I needed donations more than ever. I am eternally grateful, and I wish I could do something for them as well!
Unfortunately, not everyone has been kind. People with abrasive, abusive attitudes have also resurfaced. Their words and general treatment towards me tend to make it sound like I got cancer on purpose just for the attention. No one gets cancer just for fun. To anyone who has AML or any form of cancer and is enjoying the rekindled friendships and relationships with their loved ones, pay these hurtful people no mind. You deserve to be happy, do not let abusive people take your happiness away from you simply because they cannot seem to find their own.They will make you feel bad for getting attention from people who care for you. Do not let their words get to you. I’m not saying you should demand “delicate snowflake” treatment (please don’t do that), but you deserve to be treated like a human being, with or without the life-threatening disease.
Rest Week Adjustments
During the first round, the doctors had advised me to keep exercising my legs and arms to make sure my muscles didn’t atrophy from lack of use. I preferred dangling my feet over the side of my bed and doing stretches. When I was able to, I started standing up and wandering over to the extra bed for my guardians, which was about four feet away. I was frequently dizzy during these little walks (more like shuffling, actually) but it was exercise that my legs badly needed. Towards the end of the first round, after my IV lines had been removed, the first thing I did was walk all the way to the bathroom by myself. I was so proud of myself, even though I was walking like a drunk person. My balance was shot and my legs were weak, but that was already a little victory.
BUT all that wasn’t quite up to snuff. During my rest week, I had to walk distances greater than 10 feet to get to anywhere in my house, and I also had to climb stairs. The first few days, walking was an absolute chore. If I walked too long, my hips would start to hurt because they weren’t used to bearing the load of my upper body for that long. Around this time, my dog was also a bit sick and weak, so we would climb the stairs together SLOWLY. No one else was allowed to be on the stairs at the same time we were, simply because we’d just delay each other. XD I still got tired easily (climbing the stairs and walking around was already a workout for me) and frequently laid in bed or fell asleep, which was frustrating because I didn’t want to waste my rest week doing absolutely nothing.
I also had to get used to wearing a thick, tight N95 mask around other people and always bringing an air purifier with me if I leave the house. I wasn’t allowed to go to malls because my immune system still wasn’t at 100% and if it was up to my dad, all my online shopping purchases’ parcels would be doused with disinfectant before being handed to me.
As the week progressed, I regained my strength. Walking around wasn’t too tiring anymore, though any form of lifting would exhaust me. My legs still seemed to have a speed limit when ascending stairs, but it wasn’t as challenging as it was at the beginning. I still had moments when my balance was iffy, but I’m proud to say that I didn’t topple over at all. I was beginning to feel more confident about my limbs’ strength, even though I knew I could still do much better. I didn’t want to push myself too hard and land in the hospital any earlier than I had to.
Beginning of Round 2
This is where I am at the moment. I walked into the hospital like a normal person, not a patient. I carried a small bag and didn’t look sickly. The rest week had done wonders for my energy level and my appetite, so I’d managed to gain back a little weight that’s guaranteed to be lost over the course of treatment. I honestly thought I was strong enough not to feel weak anytime soon, but I was wrong. XD My first two days of confinement went alright, since I just settled into my room and had my port-a-cath implanted.
Right before my chemo meds were introduced, I was given preparation medicines: paracetamol and an antihistamine, to pre-empt the common reactions. The funny thing is, my immediate reaction to the antihistamine was OMG EXTREME ITCHING, and not in the usual places that my allergic reactions start. The itching went away in about a minute because duh, it’s medicine that’s meant to eliminate itching, but that was definitely an unusual reaction. We dismissed it as a psychological reaction even though I wasn’t completely aware of what medicines were being given to me beforehand (because fancy specific names began to confuse me after the second week of round 1), and just laughed it off. I had to receive pre-meds again for the second dose of chemo meds, the same stuff, and I had the same reaction. This time around, I resisted the urge to scratch immediately, and took deep breaths instead. Since this is going to keep happening, but only for about a minute each time, I may as well take it calmly. XD little adjustments go a long way, I think.
The real blow to my ego was when I was going about my business and my hand/arm suddenly wasn’t strong enough to accomplish a task that it could’ve done just fine a few minutes ago. I tried it with my other hand and got the same result. I then attempted to stand up and noticed my legs were shaking involuntarily. I resigned myself to the fact that I would have to stay in bed for a while, though I did keep trying to pick things up with my hands and kept stretching my legs. I found that my phone was the heaviest thing I could pick up without straining myself, and that it was still tiring to hold up. My legs trembled as I stretched them, so I decided to give it a rest. I hadn’t meant to, but I ended up sleeping for hours. Right about the time I woke up, a nurse came in and I asked her if these were expected reactions to the chemo meds that had been introduced to my system that morning, because I legitimately didn’t know. I was in the ICU when I started my first round and couldn’t tell what medicines were for which disease at the time. The nurse reassured me that these were normal reactions. It’s frustrating, since it messed with my sleep cycle again. The weakness was persistent for a few hours, but eventually wore off, though I don’t completely trust my legs now. XD
I feel like the key to getting through treatment without going insane is to keep a positive mindset, and to adjust as necessary. Suddenly have Jell-O arms? The meds are working – and maybe you should stop texting for a while. Keep getting knocked out? At least you’re getting plenty of beauty sleep. Plenty of your friends would love to get that much sleep. XD Try not to let things stress you out. :)
Photography by JR Madrasto