Dear Jack,
I had been relatively healthy – and I only say relatively because I have ulcerative colitis and haven’t stepped foot in a gym a day in my life – the first twenty-two years of my life. Imagine my shock when I found out that what I thought was the flu ended up being an incredibly rare and aggressive form of T-Cell Lymphoma, brought on as a side effect from my ulcerative colitis medication.
Miraculously, though, after three rounds of chemo and a bone marrow transplant, the cancer and chances of relapsing were gone, and I was back at work eleven months after my original diagnosis.
Being diagnosed with cancer in my early-twenties was incredibly scary to say the least – and even more so, because it there are so few of us out there to tell our stories. So while doctors can talk about treatment, there’s nothing coming from personal experience. And while your “peers” in the hospital can give you pointers on what to expect, the majority of cancer patients in your adult ward will be at least fifty years your senior, so there may not be much common ground.
I’ve written about my personal experience with cancer before, so I thought I’d try something different here, and give you my top twenty-two tips, tricks, and pieces of advice from one AYA cancer patient to another.
1. Do not research your own disease: This was probably the most crucial advice that I received, which really set the scene for my year as a cancer patient. Cancer sucks no matter what you specifically have, but it’s your doctors’ and caretakers’ jobs to take care of you and make these decisions, not your own. So much of the online literature is incredibly alarming, overwhelming, and highlights worst-case scenarios. You don’t need that in your life right now, and your doctors will tell you everything you need to know.
At the time of my diagnosis, I knew that my incredibly rare Hepatosplenic T-Cell Lymphoma was aggressive, but I also knew that my doctors surveyed their fellow T-Cell experts, and all unanimously agreed on my course of treatment and all remained positive and supportive throughout the process. Several months after my transplant, I found out that Wikipedia referred to my disease as a “rare and generally incurable type of Lymphoma”, while the first scholarly article that popped up after Googling the subject discussed a study of the disease from the 1990’s where around four out of nearly-fifty patients with the disease survived. In the past five years there had been, thank goodness, many medical innovations and changes in courses of treatment that weren’t online, so imagine what my yearlong state-of-mind would have been like if I had read all of that…
2. Youth is on your side: While going through the long treatment process, the term FOMO takes an entirely new meaning once you start hearing about your friends beginning their adult lives while you’re transported back to the lack of independence and constant supervision of your toddler years. But even so, your youth is on your side. You may feel like you’re missing out, but youth translates into shaving months off the regular treatment course and a much greater likelihood of remission and resuming your normal life. So while the FOMO may be real, being young means this process will be much quicker, so you can go back to your pre-diagnosis life in no time, with a new appreciation and a new outlook on life.
3. Support systems are everything: There is no way I could’ve recovered this quickly and maintained such a positive attitude had it not have been for my parents, my sisters, and my friends. It’s hard to feel helpless, lose your independence, and remain under constant supervision, but that’s what your support system is there for; they’re there to take care of you, so let them.
4. Getting the word out: Cancer patients and their families can have openness all across the spectrum: some patients will take to Facebook and social media right away or start a blog, while others may keep it to themselves, and none of these ways are right or wrong.
I fell somewhere in the middle of spectrum. I didn’t take to Facebook until after my bone marrow transplant, but I believed that it was incredibly important that all of my friends and acquaintances knew what was going on. It’s incredibly difficult and heartbreaking to tell people about your diagnosis yourself, so I was lucky that my sister was able to contact all of my friends that she knew to tell them the awful news. Because she didn’t know all of my friends, I made sure to reach out to one person from each walk of my life (work friends, internship friends, etc.) and asked them to relay the news to everyone else. This way, everyone I cared about knew what was going on, but I didn’t have to deal with the stress of getting the word out and having the same conversation hundreds of times, while I should have been taking it easy and focusing on my health.
5. Everyone handles things differently: Once your circle of friends and acquaintances learn of your diagnosis, you’ll realize that everyone handles the news differently. While it feels great when certain friends really step up and old friends reconnect to check in, there will be some people who don’t really know how to handle it. Don’t be upset about it, and don’t hold it against them. Everyone deals with horrible news differently, and some react much better than others.
6. Chemo is not as horrible as it sounds: Don’t get me wrong, chemo is awful, but it’s not even half as horrible as I could’ve imagined. It’s incredibly anticlimactic. There’s absolutely no pain involved and you can’t even feel it. From my second round and onwards – I had three rounds of five-day-in-patient chemo – I would spend my hospitalized days sitting in the common room having friends visit or reading music blogs. It got to the point that when I would describe the bone marrow transplant process, I would refer to chemo segment as “just six days of chemo”.
7. Tell your doctors EVERYTHING: Because chemo weakens your immune system, the side effects are limitless, as you’re now susceptible to all sorts of viruses and infections. This is why you must tell your doctor everything that may even be slightly out of the ordinary. Besides the fact that they’ll be able to treat any discomfort with a medication cocktail, there’s always the miniscule chance that smallest of discomforts could be the start of something serious, so let your doctor know!
After my bone marrow transplant I had every infection imaginable, but everything was easily treated, because I kept my doctors in the loop about everything going. I had a UTI, one-of-twenty cases of Listeria in Manhattan, C-Diff, some sort of infection that manifested itself as a tennis ball-sized bump on my elbow, and a lung infection, all of which was ridden pretty quickly, because I was so open with my doctors.
8. If your doctor recommends a PICC line, get one!: More often than not, if you’re getting in-patient chemo or a bone marrow transplant your doctors will recommend getting a PICC line or central line; a tube inserted through your arm or chest respectively that snakes through to your heart as a way to transport any chemo or infusions, as well as a way to administer blood draws. It may sound scary, but you don’t feel a thing when they put it in, and it’ll save you any pain from many blood tests and IV’s. It took a week before my doctors allowed me to have a PICC line, and when the time came for the tiny procedure, I was ecstatic, as my arms and hands were covered in bruises after a mere week of being poked and prodded several times a day, which is, as expected, no fun.
9. Ask about pre-meds before blood transfusions: Just like chemo, hospital stays, and medication can all become fairly routine, so do blood transfusions. Like chemo, the actual transfusion process is anti-climatic, but unlike with chemo, it’s fairly common to get a fever a few hours later, as a reaction to having products from someone else’s body begin to settle into your own. These fevers are extremely uncomfortable (I would always get the worst shakes), but thankfully they’re easily avoidable with “pre-meds”, what nurses refer to as taking some Advil and Tylenol some thirty minutes to an hour before receiving any blood products. It’s that easy!
Note: As weird as this may sound, blood transfusions are the best. Sure, one pint of blood becomes a two-hour infusion, but trust me here, it’s worth it. As your hemoglobin levels rise by two or three per pint, your energy level gets back to pre-cancer normalcy for about a week. I would always go on long walks the day after any transfusions, as it was always so exciting to feel back to my normal self, even if it was for a short period.
10. Hospital-wear: Everyone’s chemo regimen is different, but if you end up getting chemo in-patient, it’s good to come prepared – and there’s absolutely no need to wear those hospital gowns!
- Short-sleeve t-shirts: if you have a PICC line, this is most definitely the move. This way all you have to do when getting blood drawn or a transfusion is push up your sleeve!
- Button-down shirts: if you have a central line (a port, Broviac, etc.), you should 1000% invest in a few sets of button-down pajama shirts. Central lines are located on one side of your chest, so your shirt will pull up if your connected to your IV pole (not comfortable) and in order to even access the lumen, your nurse will either have to snake the tube through your sleeve (super annoying) or you’ll have to just fully lift up your shirt and expose yourself – which is even more annoying, but definitely easier when you’re awoken at 6am for your morning blood draw. Thankfully while I was at the hospital a friend of mind sent me some button-down pajamas, which turned out to be the best! This way, all you have to do is stick the lumen in between the buttons, and voila! Easy access, and no need to flash your nurses five times a day anymore.
- Slippers: For in-patient stays, most hospitals will freely give out some pretty amazing warm no-slip socks (which my mom always liked stocking up on), but you might as well bring a pair of slippers, too. The worst thing right now would be to cut your foot on something, to slip, or to have dirty feet (germs!).
- Blankets: It’s pretty normal to get cold easily when you’re sick, so blankets are a must. If you’re getting out-patient chemo, the nurses tend to keep blankets on-hand. And if you’re outpatient, bring some warm blankets (and your own pillow) to make things more comfortable.
11. Biotene: Seriously a lifesaver! Chemo attacks fast-splitting cells, which include your hair cells (why your hair falls out) and mouth cells, the latter of which makes it very easy to get painful mouth sores. The hospital will tell you this, but I just want to stress how keeping a bottle of Biotene in your bathroom and rinsing your mouth every time you’re in there will work wonders. Otherwise you’ll go through the horror stories of having sores so uncomfortable that it’ll hurt anytime you eat or speak.
12. Think of it as a new normal: It’s easy to think of your treatment process as a long pause in your life; either dwelling on the long road ahead with the end of treatment nowhere near in view, or the uncertainty of it all. It’s impossible to maintain a positive attitude with this sort of view, so it’s important to accept that this may take a while. Find a way to get into a routine and try and surround yourself by normalcies.
13. Eat: Different people will have different side effects, but even if you lose your appetite, like many do, it’s super important to eat as consistently as you can, while also adhering to the food guidelines from your doctors, as eating tuna sushi is definitely not worth risking your health for. Eat a lot of protein, let your parents spoil you with treats, and make sure to keep drinking, as it’s important to flush out of all the chemicals from your body to ensure your kidneys stay healthy. Some people get a metallic taste from water after chemo, so try seltzer or ginger ale while you’re waiting for your taste buds to return to normal. And if you get nauseous from chemo, it’s probably best to stay away from your favorite foods during treatment, as they may begin to associate with the nausea.
I was lucky enough to keep my appetite, and my parents spoiled me with well-done steak and all of the desserts I would want. My mom brought a blender to the hospital for my month-long stay, so she could make smoothies, chock full of protein powder and peanut butter to ensure I got enough nutrients when my appetite wasn’t in full-force.
14. Shave it: It takes about two weeks after the start of your first round of chemo for your hair to begin falling out, and it’s a slow, elongated process. When you do begin to lose your hair, it’s alarming, as you’ll start seeing strands and clumps of hair all over your pillow and shower drain, which tend to fall out any time you even touch your head. The hair-losing process is, in complete honesty, much harder than being bald, as at that point, you’re already going through so much else, that it tends to be an afterthought.
I’ve had long hair my whole life, and so the thought of losing it was horrifying, and I was way too scared to just shave it, so I did the next best thing: I got a huge haircut. I wasn’t ready to take the plunge, but after my haircut, the shorter hairs that fell out were much less noticeable and didn’t even feel like they were mine anymore. Also, hair grows back pretty quickly. You can’t even imagine the amount of people who didn’t know of my diagnosis and commented on my “new haircut”.
Note: everyone’s bodies react differently to chemo, which also depends on the strength of the medication. Losing your eyebrows is the worst, but they only take a couple of weeks to return. Also, good news for you ladies-you end up losing all of the hair throughout your body. That means no need for shaving your legs or armpits for quite some time!
15. Popsicle Day: If you’re on your way to getting a bone marrow transplant or have just gotten one, you’ll know what I’m talking about. As I mentioned, while chemo can really damage your mouth, it’s the pre-transplant chemo that can really do damage. My final day of chemo was a mere thirty-minute treatment, but this chemo is so strong and toxic (thus why you only need it for a half-hour!) that it can completely destroy your GI tract and mouth. Because of this, your nurses will encourage spending a certain amount of hours with a frozen mouth, following this chemo.
While ice-chips are always mentioned, anything frozen really does the trick! For my popsicle day, my friend came to visit, and brought along some homemade, bite-sized popsicles (fruit juices frozen in an ice tray), while my mom went out and bought an array of ice pops, ice cream, and smoothies, which I had to consume for seven hours that day. And you’ll bet that the thought of frozen treats still doesn’t appeal to me nearly a year later.
16. Keep busy: One of the hardest parts of going through the treatment process is the boredom and the waiting. The hours and hours of chemo and infusions, the long hospital stays, and the endless time spent in waiting rooms. Chemo lessens your focus, so reading books may be difficult, but here are a few good ways to pass the time:
- Video games: The greatest time-waster of them all! My mom had the brilliant idea of ordering me a Gameboy Color and Pokemon Red game on eBay (circa the 1990’s), which, after an intense cleaning, ended up being the perfect distraction during my endless out-patient transfusions. And for in-patient: don’t forget that there are TVs in the room. If you’re into those sorts of video games, be sure to double-check to see if they could connect to the hospital TVs.
- Amazon Fire stick: Similarly, the recommendation to purchase an Amazon Fire stick for my month-long hospital stay was the best advice I’d gotten. Yes, you can watch Netflix on your computer or cable TV, but what’s better than an endless supply of TV and movies from the comfort of your bed with your friends and family? Tip: as mentioned, you tend to lose focus more easily after chemo, so it’s good to watch something light or fast-paced. I ended up re-watching all nine seasons(!!) of 24. Not only did the fast-moving action show keep my attention, but because I had seen it years ago, it was easy to follow along.
- Art projects: Like with the Gameboy Color, I transported myself back to my youth with an endless amount of art projects, from adult coloring books to projects suited for elementary school children. They were the perfect mindless activities that helped pass the time, and became the go-to projects to do with any visitors. I was lucky enough to have my sisters in town, who would visit me every day to paint plates, paint sun catchers for my window, make bracelets, etc.
- Magazines and graphic novels: As I mentioned, it’s pretty difficult to focus on reading a book, so if you still want to stimulate your brain with some reading, find a graphic novel or magazine. I brought an endless supply of old issues of the music magazine The FADER, which helped exercise my mind without ruining my focus.
17. Therapy Dogs: I think therapy dogs deserve their own number on this list, because getting visits from those cute little puppies really made my day, countless times. If you’re a dog-lover, too, definitely let your nurses know that you’d love to have these four-legged visitors, so anytime they’re spotted walking around your floor, the nurses will make sure they head to your room.
18. Stay active!: My biggest mistake was most definitely not staying active while hospitalized for the month of my bone marrow transplant, and because of this, it took me months to walk even three Manhattan blocks without needing a rest. Between low hemoglobin levels, being required to take enough immune-suppressants to be considered a meal, and spending your days in a hospital bed, you’re going to have some leg atrophy no matter what happens. But get a head start, and take as many walks as possible around your hospital wing to be sure that you won’t lose too much of your leg muscle. The more you walk around, the faster you’ll heal, too.
19. Listen to your body: While it’s important to stay active and keep busy, your hemoglobin will begin to dip around a week after the start of chemo, making you exhausted. It’s so great to remain social during this process, whether it’s making plans while you’re off-cycle during chemo or inviting friends to hang out at the hospital, but if you’re feeling exhausted, don’t push yourself. Finding the right balance between remaining active and social with getting enough rest is incredibly important to the healing process.
20. Caffeine: During treatment, it’s wise to avoid caffeine, as medication and chemicals can give you a sensitive stomach and alter your bathroom habits. But after treatment is a whole other story. The hardest part of the cancer process is the aftermath; the period where you’re just waiting for your counts to go back up and for your energy to return. It’s very easy to get depressed during this period – especially if you’re recovering from a bone marrow transplant, which takes months – but here’s a secret: caffeine is the best natural anti-depressant. Once I came home from the hospital, I began drinking coffee again and felt, emotionally, back to my normal self. And to make matters even more exciting, I made sure to take a walk to the coffee shop around the corner every single day with my mom, to change things up from just sitting around the house watching TV all hours of the day.
21. Don’t be afraid to ask for favors: Recovery is bo-ring. Even when you’re doing really well and in remission, post-chemo and especially post-transplant recovery can take a while. Don’t be afraid to ask for favors to make your days go by more quickly!
Before I was diagnosed, I would go to concerts more often than not, but of course, while going through treatment, my low white count made it impossible, as crowds and germs would surely send me back to the hospital in a minute. Thankfully, though, when my immune system was getting a little bit better and I had the energy, I asked friends in the music industry to help me get VIP passes and backstage tickets to ensure that I could stand as far removed from the crowd as possible. It had been the longest I’d spent without going to a concert, but thankfully friends, acquaintances, and even people I didn’t know, made sure I could come to shows and have a good time, while also remaining germ-free and healthy. This was really important for my attitude and emotional health.
22. “Cancer friends”: And last but certainly not least, I would definitely encourage having “cancer friends”. You know how you have high school friends, college friends, family friends, etc.? Well, you can also have cancer friends. One of the hardest parts of having cancer as an adolescent or young adult is the fact that it’s really hard to find anyone who can relate to what you’re going through. As I mentioned earlier, sure your doctors can tell you about chemo and bone marrow transplants, but it’s so different from actually going through it; actually knowing what it feels like, and all the little physical and emotional nuances that come with it.
When you spend time regularly in the hospital, whether it’s during the endless hours in outpatient waiting room or in the in-patient halls and lounges, you start coming across many familiar faces. And while they may be at completely different stages of their lives, you’re going through something few ever go through. Similarly, I found it great when friends connected me with other friends who are going through or have gone through something similar. It’s so easy to feel alone and isolated throughout this entire process, so I found it incredibly helpful talking and getting advice from people who have gone or are going through something similar.
Sincerely,
Missy
AYA Cancer Survivor