Hi friends! Thank you for being so gracious and supportive as I took a few days off from blogging. Most days I’m really happy to have blogging as a hobby and a way to keep me busy and sharp while on sick leave. However, on days when I actually do feel really, really sick, it’s hard to find the energy to post. As chemo drags on and I feel progressively worse, don’t be surprised if I take more days off here and there.
Even though I still feel shitty today, I wanted to give an update as to what is going on with me and this cancer thing. Last you heard, my temperature was a little high on Monday and I was experiencing a dry cough. Well, as the day went on, I started to get short of breath. Thankfully, I was scheduled to see my oncologist anyway on Tuesday, and he got right on it.
After a chest x-ray, pulmonary function test, and a detailed CT scan of my lungs, my oncologist was able to find that I’m experiencing decreased lung function and inflammation on my lungs. In other words, I’m positive for drug induced lung toxicity. It’s no joke.
One of my chemo drugs, Bleomycin, which is the “B” in my ABVD Hodgkins cocktail, is known for basically poisoning the lungs. It can cause inflammation and scarring on the lungs that reduces the amount of air I take in and oxygen I absorb. It happens to about 18% of people taking my chemo cocktail, and can be fatal if not addressed right away.
Thankfully my oncologist says it looks like we caught it early. The damage can be permanent, but he has high hopes mine will be reversible. I’m starting on Prednisone (steroids) right away to help reduce the inflammation and the coughing. I didn’t end up getting chemo this week, but will likely not be taking the Bleomycin with my chemo next week. From what I’ve read, Bleomycin is the most effective in the first three months of treatment anyways, so hopefully taking me off of it won’t affect how successful the chemo is at killing the cancer. I’ll also be seeing a respiratory therapist once a week.
I am pretty bummed about this new development. For one, I can’t get off the couch without gasping for air. I wake up in the middle of the night with coughing fits that just won’t end. Even though it’s been two weeks since my last chemo, I’m still exhausted because my body isn’t taking in enough oxygen. Don’t get me started on having to take Prednisone. I’m guaranteed a 20 lb weight gain as a side effect of that one. My moods will change, and it will put my bones at risk of breaking.
I’m at least secretly happy that I have this extra week of being chemo-free to allow my body to recover more before I tackle my next six treatments. I thought hitting the halfway mark would be a great milestone, but it’s definitely more of a reminder of just how long and gruelling this experience is. I knew I would hit bumps along the way, but that still doesn’t make the bumps any easier. I just have to buckle down, sharpen my focus, and know that there is a light at the end of this tunnel.
When I was first diagnosed with cancer, I felt very alone. It was a time when literally hundreds of people showed love and support towards me, and yet I had a hard time finding those who truly understood. I was in the oncology ward with people 2-3 times my age. My family was learning how to deal with the fact that the baby of the family (me) could be the first to go. If there is one word to sum it up, it would be “shock.” From me and everyone around me.
It’s with this that I turned to books and the internet. Not obsessively researching my disease, but rather looking for stories like mine. I stumbled across Young Adult Cancer Canada in my search, and proceeded to read every single one of their survivor profiles. Finally, people like me. People who went through the horror of cancer in the same stage of their lives and lived to tell the tale.
It’s that same organization that sent me, along with other young adult cancer patients and survivors from across Canada, to see the movie 50/50 last night. I’ve been anxiously waiting to see this movie since I heard about it the first week I was admitted to hospital. Finally, I could see my story play out on the big screen.
I’m not going to sit here and give you a critical review of the film, and I’ll try not to reveal any information beyond what’s shown in the trailer. Needless to say, seeing my story on the big screen stirred up a lot of emotions!
First and foremost, I loved that they injected a lot of humour into the film. Cancer is not depressing all the time. In fact, a lot of it is spent laughing at the absurdity of the situation. There were moments in the film where I found myself laughing way louder than anyone else around me. I am definitely one of those people who can find humour in the strangest of situations, and I think anyone in their 20s who finds themselves taking fun drugs for free at the hospital would be able to do the same.
What I thought the film really got right was that getting cancer in your 20s is not all about finding yourself, but more managing the emotions of the people around you. I’ve always wondered if it’s sometimes easier to be the sick one and not the one watching someone you love go through hell. Even though I know everything everyone does is because they love me, it is hard to be selfish when there are so many people around me who need to hear I’m okay. People say they can handle it, but really, they can’t (to no fault of their own).
While I overall enjoyed the movie, there is no way it could have summed up the cancer experience. It hit a lot of the high points but there are SO many points throughout the process, there’s just no way to get them all. On the other hand, it was hard to watch at some points because of how real it was. I think it’s the first time I’ve ever seen someone get chemotherapy in a movie. Although I’ve never been offered pot macaroons in the chair, it wasn’t far off from what I go through every other week.
The hardest part however is the surgery scene at the end. My mom, sister, and I were all crying. I think it’s because we are not all that far removed yet from my own surgery three months ago that led to my diagnosis. They removed a lymph node that day, but the back-up plan was to remove a piece of the cancer from around my heart. A much more serious procedure that had my family anxiously waiting while the surgeons worked on me behind the door.
There is no doubt that being the one on the operating table is easier than the one waiting to hear the news. I was so doped up at the time that I couldn’t really understand the emotions around what was going on. So seeing that onscreen struck a bit of a nerve.
Since my diagnosis, I have found tons of young adults with cancer to connect with. Some survivors, others going through treatment like me right now. We talk a lot about how we manage the day-to-day of feeling crappy all the time. The activities we miss. How we deal with our families. I don’t feel as alone, which can sometimes be the hardest part of being so sick at such a young age. The life I was busy living and planning is suddenly put on hold, and the many, many decades I have ahead of me are now filled with a giant question mark. It’s impossible for 50/50 to reflect the whole experience of having cancer in your 20s. But I’m happy that it is showing big audiences that is does happen, that not all of us die, and a lot of us get through it laughing.
It occurred to me that while I briefly went over the side effects I’d be experiencing when I first started chemo, I never really went in depth with what it feels like. So today I thought I’d list out all the fun things that come with chemo to create a better understanding of it. Keep in mind, this is just for my Hodgkin’s ABVD treatments. Some people experience additional side effects or don’t get any of the ones I’m listing at all. Concentration of dose, length of treatment, and of course individual reaction to the drugs all play large factors in it too!
1. Nausea. I have actually not experienced a lot of nausea thanks to my team of anti-nausea meds on the side – zofran, decadron, and maxeran. If anything, I sometimes feel like I do after a long road trip. A little gross and weak, but nothing like the bad hangover I expected it to be. The room never spins, I don’t fall into walls, and I don’t get beer goggles that make me hit on unattractive men.
2. Breaking down of the stomach lining. As you know, chemotherapy kills fast growing cells. That includes the cancerous cells and the healthy cells. The lining of our stomachs is made up of fast growing cells. This is actually what causes the nausea, but I find I get different side effects from this. Sometimes stomach pains when I eat certain foods, eat too quickly, or go too long without eating at all. The worst is when I get a burning sensation from my tummy to my throat. I don’t know what this is, but it’s the only time I ever feel like I’m going to throw up.
3. Hair loss. Okay, so everyone knows chemo kills the hair on a person’s head because it’s made up of fast growing cells as well. That hair is usually first to go, but what a lot of people don’t realize (or I didn’t anyway) is that chemo can kill the hair all over the body. From the forearms to down under. Losing the hair on my head sucks, not needing to shave or wax is at least slight bonus.
4. Mouth sores. The lining of your mouth is made up of fast growing cells too! I’ve been lucky that I haven’t had any mouth sores yet. But I do get extra pain from all four of my wisdom teeth growing in. They’re growing in normally, thank goodness, but I’m not allowed to go to a dentist on chemo. Cuts in the mouth don’t close up as quickly as other places, and being in the mouth makes them much more susceptible to getting infected.
5. Cold sores. I haven’t gotten these yet either, and let’s hope I don’t get them at all! I think the weakened immune system has something to do with an increase of cold sores with chemo patients. Speaking of which…
6. Fever/Neutropenia - I’ve talked about my weakened immune system a lot. It’s different with every chemo regimen, but mine in particular zaps my white blood cells, which are essential for fighting off sickness. My immune system is consistently around 1/10th of a normal person’s. Because of this I have to take my temperature every day. If it goes up to 101F, I have to go to the hospital as it could be a sign of infection. Simple illnesses can blow up into very big ones on chemo because my body does not have the resources to keep it under control. I actually have a piece of paper that will let me jump the line in the emergency room and get admitted right away. This is currently my worst fear as I absolutely do not want to be an inpatient again – especially in an isolation room.
7. Numbness – I don’t get this a whole lot, but sometimes my fingers and toes will get a little numb or tingly. I’ve heard of this being really bad with other patients though.
8. Fatigue – This has been one of the worst side effects for me, and many other people. The kind of fatigue you get on chemo is nowhere near the kind of fatigue you would get in every day life. It’s not like I feel tired and it will go away with a nap or a good night’s sleep. It the kind of fatigue that can be completely debilitating. Often times I will lay completely still and feel like I don’t even have the energy to move an arm. Instead of being hit by a mack truck, I feel like it has run back and forth over my eyelids. Doing something like bringing the laundry to the basement is enough to tire me out for the following hour. It’s intense!
9. Diarrhea/Constipation – I debated mentioning this because it’s TMI. I don’t want to read about poop on other blogs, let alone write about it on my own blog. But it’s kind of a big deal to those who suffer from it. I usually only experience the latter, and let me tell you, it SUCKS. Big time. I never gave much thought to those who complained of constipation before, but it is really no way to live. I have to take laxatives every day, and eating veggies and exercise helps too.
10. Chemo fog – In other words, I’m losing my mind. For years, people thought chemo fog was a result of the stress of chemo. But newer research is showing that it’s a very real thing. In fact, my ABVD drugs can actually sneak up through the vessels that protect my brain from the rest of my body. It’s made me forgetful, I can’t remember where I put things, my appointments, what I did yesterday, or think of words mid-sentence. I have a hard time reading and retaining information. Lord knows how many e-mails I’ve forgotten to respond to. Basically, my Nana is smarter than me now.
11. Food restrictions – I finally met with the oncology nutritionist and learned a little more about what I should and shouldn’t be eating! Surprisingly, nothing with a strong concentration of anti-oxidants or it could mess with what the chemo is doing to my red blood cells. That includes no green tea! Because of my low immune system, I can’t eat foods that may contain bacteria. So certain fruits and veggies are iffy, or need to be washed really well. No sushi or shellfish, sliced meats, etc. Nothing too crunchy that could cut my mouth, and nothing citrus-y because it makes my mouth hurt. I also have to double my calcium and take in extra protein to protect my bones and muscles from the chemicals in the chemo.
12. Dry skin – This hasn’t been *too* bad for me yet, but I do find my skin has become a lot more sensitive on the chemo. I’ve been getting skin reactions to things I never did before and breaking out into a rash after touching something is quite common for me now.
13. Burn easily – On that note, chemo makes your skin more sensitive to the sun too. I never got any burns this summer despite spending a fair bit of time out in the sun, but I also slathered on the sunscreen religiously.
14. Weight gain - Before starting chemo, I was scared I’d turn into this rail thin sickly person because that’s what I associated chemo with. Truth is, because of the anti-nausea meds these days, most people keep their appetites while getting treatment. Pair that with a decrease in activity and a slew of steroids that retain fluids, and you get weight gain. Fabulous.
15. Bone pain – This is not a side effect caused by the chemo, but rather a side effect of a drug used to treat the side effect of low white blood cells. Gotta love how that works. The additional drugs I’m taking on top of the chemo have side effects too, but I’m including this one because it’s by far one of the worst. Because neupogen stimulates cell grown within my bones, it causes a pain deep inside my skeleton. Mostly my pelvis, spine, thighs, and shoulders. Some days it’s quite manageable, other days it leaves me in bed writhing in pain and resorting to pain killers. To me, there’s few kinds of pain worse than that which happens in your bones.
And with that, I am off to bed! I am feeling particularly sucky after chemo #6 yesterday. After looking at this list, it’s no surprise why!