Subject: Things I wish I had known about cancer…

I thought I should write this post before I forget all of about it in the summer. There are a bunch of sites out there about what it’s like to have cancer and blah blah, but I didn’t really find them useful…unless what you’re looking for is scientific data, etc. Some of this stuff is repetitive, since I most likely mentioned it earlier in my posts…but here’s all the info comprehensively, so in case if you should ever need it (and I PRAY that you won’t), here’s what should be known about cancer (from a cancer patient’s view):

Having cancer:

• It generally sucks.
• The side effects vary; nausea is the most common complaint, but some people are lucky and seem to escape this. It’s normal for nails to turn black, your tongue to turn white, to have a numb tingling sensation in your fingers and/or toes (due to nerve damage. However, I heard that vitamin E helps), and your digestive system won’t work well. You’ll probably vomit a lot, feel tired most of the time, and get lots of headaches. You’ll feel sore around your hips, your shoulders, and your jaw because your bone marrow will be busy producing red blood cells. Your hair will most likely fall out, and that could include your eyebrows and your eyelashes and hair elsewhere (I’ll leave it to your imagination…)
• You’ll need to take blood tests at least every week in case your counts are down. Normal counts (of a person w/o cancer) is 14-16; with cancer, your counts are usually <10. Below 8, you might need a blood transfusion. Also, if it’s below 8, you’ll generally start to feel dizzy and light-headed (there’s also the increased chance of passing out suddenly; that happened to me once)
• You’ll need to watch your white blood cell count. If you’re neutropneumic (not enough neutrophils), you’ll need to be rushed to the hospital asap since a simple fever could kill you within a few hours. A fever above 101.3 Fahrenheit warrants a trip to the ER. 
• Avoid cutting things or brushing your teeth too vigorously. Your platelets will also be affected by chemo; make sure you have enough or you could bleed to death with a paper cut.
• Chemo doesn’t hurt - they inject it into you through a portable catheter (installed into you before chemo starts; mine is just a little below my left shoulder), a pickline, or if you have nice big veins….through your arms. Although I don’t really recommend it going through your veins, since chemo is literally poison…and I would imagine it to be rather painful. And I met a woman who can’t really move her left arm much because she got chemo injected there…
• Chemo injection usually takes < 1 hour, unless they give you several doses in one day, in which case it can take several hours. A nurse will either “push” it (inject it manually) or program it on the IV. However, they usually hydrate you before chemo; you get fluids from the IV for at least 4-6 hours. They might also hydrate you for a few hours after chemo, although it depends on what type of drug you’re getting. Some people are inpatients when they get chemo (they stay in the hospital overnight; hospital stays can vary from one night to however many nights it takes…). Others can go home the very same day (as outpatients).
• Chemo takes place every 2-3 weeks. I think breast cancer patients generally get chemo every 3 weeks, while sarcoma-based cancers usually get every 2 weeks. However, the schedule isn’t predictable because you can only go in once your blood counts are at an acceptable level (platelets have to be above 50,000 and white blood cells have to be at an 8, 9, or 10? anyways, blood transfusions can’t give you white blood cells, so you have to wait until your body makes enough before you can go in for chemo) Hence, sometimes people may come in 3 weeks after their last chemo, even though they were scheduled to come in every 2 weeks.
• Radiation doesn’t hurt; it might be my favorite part of this whole treatment because it’s painless and it’s quick (10-15 minutes). Setting up takes longest; the first time they do it, it can take up to 2 hours for them to get you into the right position. And they give you three tiny tattoos (dots actually) to mark how you’re going to be positioned. The only annoying part about radiation is that it occurs every day (5 times a week, weekends excluded) and that you have to moisturize yourself (with a fragrance-free lotion) 3 times each day to minimize effects and “sunburns.” Sunburns typically show up after 2 weeks. You can get chemo and radiation at the same time, although they might take several drugs out of your usual chemo cocktail because they have an adverse effect on radiation.
• Surgery usually takes place after several cycles of chemo (6 for me). They give you 2-4 weeks of rest (to boost your blood count). Afterwards, they may give you some recovery time…I got 2 weeks, but my surgeon mentioned that some (unfortunate) people just go straight back to chemo the day after surgery.
• Some people are lucky and don’t lose their hair. Don’t count on it though. I lost mine after 1-2 cycles of chemo and my eyebrows/eyelashes after 5-6 cycles. It’s a good idea to get a shorter hairstyle right before chemo, so that way…once it starts falling out, it won’t be as horrifying to watch. However, in terms of hair recovery news, my hair started growing back (during my surgery break) in a month and grew about an inch or so in the 1.5 months of the surgery+recovery time. My eyelashes and eyebrows grew even quicker; in less than 2 months, my eyelashes almost grew back to its usual length. It also came back fuller and thicker too. (Also, most cancer survivors find that they have more hair than before; sometimes it comes in curly too). Guess you can count ditching the mascara and curling iron as the perks of having cancer…

What cancer patients usually find useful:

• Some women like wearing hats (I did for a while), but I think scarves are an even better option. You can just take a large square scarf, fold it in half like a triangle, wrap it around your head, and fasten it with a scrunchie at the back of your head (and let the ends hang loose or you can loop it and fasten it with the scrunchie). OR, there’s this site (recommended to me by my friend Myndi) that sells these scarves: http://www.4women.com/about.php
• For wigs, I recommend this company for their high-quality, albeit expensive ones (but they only sell to retail…so you might have to ask your hairstylist/hair salon to help you order one): http://cnsfashions.com/index.php
• Get a natural-looking matte red lipstick (or any shade that looks good on you); wear it when you’re at clinic if you want to fool the doctor into believing that you look and feel well. You could also pinch your cheeks to get a “blush.”
• I’ve found that acupressure does wonders. Acupressure (NOT acupuncture) is basically a massage, but it’s a concept from Eastern medicine with amazing healing results. Acupressure basically alleviates my nausea and helps boost my blood count (that’s how I’ve been able to keep on schedule). I don’t think I would have been able to last this long or be able to continue my treatment without getting weekly acupressure treatments. It’s basically my best kept cancer secret (I haven’t really told anyone because I don’t want my doctor’s appointment book to suddenly be booked out.) But for others’ sake, I’m including my doctor’s (Dr. Wang) website in case if anyone is interested (and I highly recommend it!): http://acupuncture-wang.com/
• Bring earplugs. A MUST because the sounds that the IV’s make are exceptionally annoying and nauseating, especially when you want to sleep.
• Bring earphones+Ipod to listen to music; music is a good way to distract and pass the time. (Ex: I prefer classical or pop because for some reason, I just get more jumpy and hypersensitive when I listen to rock during chemo.)
• Don’t eat anything with an intense flavor the day you’re due for chemo. Also, this rule applies for 1-2 days after you’re released from chemo. Trust me on this one - my appetite for various varieties of food have been ruined because I didn’t follow this; the taste WILL linger for days and make you nauseous.
• If you want to eat during chemo, it’s a good idea to stick with bland foods like bread and crackers (or fruit like apples). Also during chemo, you probably don’t really want to eat either, so it doesn’t matter much anyways. Don’t force yourself to eat since it will only come up later…
• If you want to vomit during chemo, DON’T. You may think that it will make you feel better, but it definitely won’t. You’ll just feel terrible, and even worse…it may start a never-ending cycle of vomiting. Try to take deep breaths and think about other things.
• Buy different varieties of mildly fragrant soaps. The hospital soaps usually smell like alcohol, and you’ll get sick of it in < 1 hour. Bring a different soap with you each time because chemo will give you supersensitive olfactory senses…and I doubt you’ll want to smell the same thing each time, especially after that scent has been associated with chemo.  
• Bring your own sheets, pillow, and blankets if you can to the hospital. It just feels more comfortable.
• Some people buy aromatherapy to help them feel less nauseous. Mint and lavender works pretty well. Also, I’ve found that citrus scents work well too (Ex: cut a lemon in half).
• Get a Netflix subscription. You’re really going to want to kill time while at the hospital. Netflix has a bunch of instant play movies, so you’ll always have something to watch.
• If you have a port, it’s a good idea to buy Press’n seal wrap to cover the Emla cream (the numbing cream you use 30 min - 1.5 hours before they stick a 3/4 inch or 1 inch needle into your port). It sticks pretty well and is easy to use/cut.
• Buy a bunch of button-up shirts so that way it’ll be easier for the nurse to access the port (it’s also easier to change, especially if you have an IV attached to you).
• Don’t do anything intensive and try not to lift heavy things; if you have a low red blood cell count, you can faint without warning.
• Just eat whatever you want. Screw your diet. You’re not going to want to eat during chemo, and that’ll warrant a few dropped pounds at least. Nutrients don’t matter much anymore. Calories are what you’re looking for.

What cancer patients DO and DO NOT want to hear (at least from my POV):

• Don’t say things like, “It’ll get better!”  or “Don’t worry!” —> Cancer is unpredictable, and it will always be something you’ll have to worry about for the rest of your life. You may have a greater chance of survivorship if you come up clean for 5 years, but it’s never for sure. Cancer is UNLIKE vaccines - even after treatment, you’re still not immune to it.
• Don’t say anything like, “It could get worse” —> Cancer is already considered a rock-bottom in most people’s lives. Please don’t rub it in our faces.
• Don’t say anything like, “Stop being so negative, be more optimistic!” —> This perhaps irks me the most, because like I said, cancer is just unpredictable. It’s really a flip of the coin. You’re either lucky, or you’re not. No one knows if they’ll live. Having cancer is depressing, so just let the person wallow in unhappiness for a while. Their feelings are legitimate and they need the process to grieve so that they can move on (and hopefully feel happier as time passes by).
• DO acknowledge how much cancer sucks —> People try to avoid talking about cancer with cancer patients, but in fact, I think most cancer patients WANT to talk about having cancer. Just make sure your questions are worded respectfully.
• DO let them know of your well wishes —> It’ll definitely cheer them up, and make them feel much more loved and supported. Fighting cancer can be pretty lonely, and knowing that people are rooting for you can motivate you to keep fighting on.
• DO keep in contact with them —> It’s nice to hear from people from time to time, although you don’t necessarily have to do it on a consistent basis. Cancer patients LIVE to hear about what’s going on in other people’s lives because they are restricted from a lot of normal activities (due to lower immunity and fatigue, etc.)

If you have more questions or comments about having cancer, you can reach me at laurice.shern@gmail.com