What I Wish I Could Tell Every Newly Diagnosed Cancer Patient (Post #33)

 

My MAR; the only reason I'm able to keep track of my medications. 

(Thank you to my daughter who created my first version.)

"You have cancer." Oh, 💩. (Insert bad word *here*) This is the one time in your life I won't make you contribute to a swear jar, suck on a lemon, or wash your mouth out with soap, because...cancer sucks. (Although, in retrospect, I didn't actually use a bad word, and I still don't swear so...🤷‍♀️) As someone halfway-ish through the battle, I'm here to tell you that while this might be the most challenging fight of your life, there is still joy to be found in this season. Don't allow cancer to steal any more than it already has; this is a time to fight with everything you and your team have. Oh, you say you don't have a team? Yes, you do. You may have seen the slogan "No one fights alone." It's true. Cancer sucks, but the "cancer family" is awesome. (Anyone who isn't gets turfed pretty quickly; don't worry, you have to be very odious to get turfed.) You have joined a club you probably never, ever thought you'd join, and certainly one to which you do not want to belong, but this club is comprised of warriors, and when we've won our own battles, we stick around to help others fight their's. So, here's the lowdown on what I wish someone had told me when I began my fight.

Yes, it's tough, but so are you. People will come through for you in ways you can't imagine right now, and the identity of some of these "pillars of strength" may surprise you. Prepare yourself for new friendships! Others may disappear from your life; let them go. Not everyone can handle the battle before you, and that's okay. 

Be willing to accept help. The time will come again when you will be in a position to provide support, so take note of what was most helpful to you and make a pledge to give back when you're able. 

Take someone with you to every. single. appointment. What you remember is going to be different from what they remember. Take copious notes, ask the medical staff to repeat anything you missed and question anything you don't understand. Prepare for every. single. appointment. Keep a running list of questions to ask your surgeon/oncologist/radiation staff on your phone so you have access to it whenever something pops into your mind. (Don't expect to remember. Bahahaha, oh, that's funny. 😂 You won't. 😑) Do not leave the appointment with questions left unasked, but acknowledge that there may not be answers to all of your questions...or you may not like the answers. There is an app that allows you to record your appointment if you're comfortable with that. (Being married to a physician means I'm not, but that's a me-problem. 😁) Doing at least a bit of research before your appointments will allow you to understand your particular cancer better. This will also help you feel more in control of your treatment. I know that it's depressing to read recurrence stats and stories of treatments gone wrong; avoid those if possible. The province has several booklets that are great. Just fold over the palliative care page on itself, so you don't stumble across it repeatedly! 

Stand up for yourself, whether that's with medical staff, (they are there to help and are usually absolutely amazing) or with people who think it's helpful to share unhelpful stories with you. 🙄 It's fine if the stories are positive and encouraging, but feel free to shut them down if they start sharing stories of how their friend had the same cancer and was dead in 3 months. 😏 Seriously? You don't need this. Ditto for people who try to convince you to try a different treatment plan than the one you've decided upon. 

Now for the practical:

Prepare for your surgery by doing everything you know will tempt you to overdo things during your recovery. Make meals ahead of time, or fill the freezer/fridge with easy-to-prepare food. Plan out where you will spend most of your time recovering and make sure there are no to-do projects staring you in the face. (Trust me, this is super annoying.) Create a list of activities that you can do while recuperating, whether that's putting together a puzzle, taking up watercolors, knitting a hat, painting a birdhouse, etc. Taking up scuba or sky diving is frowned upon by most oncologists, in case you were thinking of these activities. 😊

Allow yourself time to recuperate. You just had surgery! Cut yourself some slack, but don't become such a slacker that you jeopardize your recovery. Do the recommended exercises/activities and don't forget to move. This is not the time to develop an unhealthy relationship with your sofa! 😊

Chemo is hard, but it doesn't last forever, even if it feels that way at times. Here are a few tips that I wish I'd known before commencing chemotherapy:

• Make sure you understand the anticipated side effects of your particular chemo cocktail, INCLUDING the random, less common reactions. Remember that, to quote Dr. Zhu, "No one gets every side effect, but everyone gets some." Also, the side effects will change depending on the day of the round. For example, I'll start with nausea and incredible brain fog, move on to nausea and sensitive skin, then mouth sores, then a runny nose, then something else. It's exciting to wake up each morning to something new! Or not. 🙈 Realize that everyone reacts to chemo differently, even if they're receiving the same "cocktail." Just for fun, here's a quick rundown of what I've experienced, though never all at once and with varying levels of acuity. 
• dizziness
• nausea
• vomiting
• brain fog
• night sweats
• chills
• constipation
• diarrhea
• tearing/watery eyes
• runny nose
• sensitive and super dry skin
• peeling lips
• nose sores
• nose bleeds
• throat sores
• mouth sores
• sensitive/bleeding gums
• cheilitis (sores at the corners of your mouth) 
• loss of all hair including body hair
• Taxane Syndrome
• bone pain
• flaking/brittle/peeling/discolored nails
• altered sense of taste
• impaired memory and memory loss

• If you can handle it, cut your hair short before beginning therapy. Prepare to shave your head (using the closest guide to avoid nicking your skin) about 10-15 days after your first infusion, which is usually when it starts to fall out for real. This reduces the trauma of having handfuls of hair fall out, though this may still happen on a smaller scale. 

• Over hydrate for the 24 hours prior to chemo, double hydrate the day of chemo and for the day following. This not only ensures an easy IV insertion, as your veins are plump, but it helps combat the onset of side effects. My nurses were always delighted to see my veins! 

• Take your medications when prescribed, ie, Dexamethasone, Ondansetron, etc. These meds all serve different purposes and it's critical that you take them when told to do so. It is much, much harder to "catch up" to pain and/or nausea, rather than just staying ahead of it. 

• You may need more medications than initially prescribed. You will be given a phone number to call if your side effects are onerous. Onerous means anything that is impacting your quality of life. Vomiting is awful, but being so nauseated that you can't eat or drink isn't great either. Be sure to write down all your side effects which will allow your medical team to help you combat them. I began this journey taking a handful of meds and am now up to 12. These medications allow me to have an almost normal quality of life, other than "Hell Week," of course. 

• Take your medications around the clock if necessary. Yes, that means waking at night to take meds, something not generally recommended. However, if you'll be waking up at night due to pain, you may as well wake up before that happens and pop some meds. In order to do this with a chemo brain you may need to set alarms on your watch/phone, or have someone take over the administration of your meds for you. I found it easiest to have my meds ready to go in empty pill bottles. I know that the 3 regular yellow containers hold my 11:00, 3:00, and 7:00 meds. My 4:00 meds are in a shallow flat pill  container that's easily accessed. I barely need to wake up! Also, remember to take any meds along with you, including pain meds, etc. wherever you go. (Men: "murses" are actually a pretty fantastic idea. Start wearing a beautiful scarf folded nicely, and people will just think you're European!)

• You may need to give yourself injections called GSFs, (granulocyte stimulating factor) to increase the production of white blood cells. I take Lapelga which is pegfilgrastim. It needs to be refrigerated (but not frozen!) at all times prior to use and hurts like a murder hornet sting when injected...or so I imagine. Can you tell I dislike pain? UPDATE: Allow the medication to come to room temperature before injecting (it won't go bad in an hour on your counter) and it doesn't hurt at all! WHY DID NO ONE TELL ME THIS!! Treat this stuff like gold, as it's a wee bit pricey: $1878.73 for 0.6ml. Yeah. You read that right. There are 4 digits before the decimal. 😳 (And you thought your Coach bag was expensive!! I get 6 of these shots!) Thankfully, most insurance plans cover it and if you don't have insurance there are other ways.  At the Cross, instead of buying group gifts, they pool their money to cover uninsured patients' drug costs. I may have sprung a leak upon hearing this. You may take something similar which is injected daily from days 2-6. (If so, I'm very, very sorry...😥 I'm not exactly needle-phobic, but I am pain-phobic!) There are usually teaching sessions to help you with these injections, or you can do what I did and get a nurse to do it.  A nurse who thankfully lives with me.  (My daughter!) Here's a hint: belly = drips and dribbles. I find it less painful and easier to have her inject my upper thigh. No worries, there is plenty of Speck (bacon) there! 

• I have created a MAR (medical administration record) to assist me in taking medications because...I'll be honest, there's no way I would be able to keep them all straight without it. On my MAR I also have spots for my daily temperature (your medical team will ask you if you take it regularly, trust me) and for the side effects of that particular day.

• Make friends with your pharmacist. (Or better yet, just happen to have the best pharmacist ever as your BIL.) They may have more insight/experience to offer than even your medical staff. Mine gave me probiotics which have made a HUGE difference to the whole bowel/gastritis side effect rollercoaster. (Don't ask - you'll know soon enough, but buy Imodium and toilet paper if you see some on sale...😖) He also found an iron supplement I can tolerate. (I couldn't even take Materna when I was pregnant!) 

• Be willing to take meds you would normally avoid. I'm taking morphine. Yikes. I take it as little as possible, which is around the clock for about 10 days, so not exactly a little, but it makes the pain bearable. (Oh yeah, chemo can result in pain, not just fatigue, nausea, and baldness.) I've also taken Ativan one evening when I thought I was losing my mind. 

• Which reminds me...there is a psychological component to chemo as well. 😕 It's hard, you're worried you're not strong enough and yet you're determined to power through, but you're not sure you can do this X more times and you certainly didn't realize you could feel this awful and still live...you get the picture. Reach out for the support you need, whether that's medications, therapy, or just someone to encourage you. 

• Audiobooks may be your sanity saver. During that first week when you need distraction but have the attention span of a squirrel on speed, listening to an audiobook might be a good idea. 

• Line a large container with a garbage bag to make keep clean up easy if you don't make it to the "Great White Telephone." 🚽 Keep gloves and paper towels within easy reach of where you might need them. (Remember that you're toxic during this period and clean-up should be done with more caution than the Exxon Valdez.) I've discovered the weirdest warning signal that occurs every time I'm about to vomit; I begin to salivate like crazy! As in, Jacek Chocolate just popped up in my Instagram stories kind of salivating. I actually appreciate this, as it allows me to make it to the bathroom on time.

• Stock the fridge with easy-to-digest foods that have a high nutrient value. I have discovered a new love for tapioca pudding and Cream of Wheat! Also, realize that you may suddenly become lactose intolerant - there are meds for that!

• If you're like me, prepare to be more exhausted than ever before...and I've traveled to Australia. 😊 (24-hour flight!) Not only will you be more tired, but as you advance through your chemo rounds, some side effects including this one are cumulative, meaning that you will be more tired with each round. Also, just because you feel fine one day and are able to "work as before," be prepared to play catch up with multiple naps the next day. I experienced that today, after having a "busy" afternoon yesterday. (Busy...as in I hung out at Ken's office for a while, visited Salisbury Greenhouse, and picked up a curbside order at Canadian Tire. Exhausting right? Not really. 😐) I liken my energy to the battery in my aging laptop; I function better when plugged in and need just a wee bit longer to fully charge.  

• Realize that if Carboplatin is part of your "cocktail," you will not be playing chef while undergoing chemo. Your tastebuds will change from day to day, sometimes even hour to hour. Oh, and textures may suddenly become an issue. I've been craving garlic sausage. (My husband is such a lucky man...😁) I picked some up today and guess what? It's like chewing gravel, though no one else complained, so it's obviously a chemo thing. Be patient with yourself and remember that now is not the time to lose weight. You can force yourself to eat, even if it's a couple of bites every hour. UPDATE: Then again, sometimes you can't eat anything! In that case, make up for it in week 3 when you can eat again...think poutine and banana splits! Eat whatever you feel like eating, whenever you feel like eating if you find yourself losing weight. For me that meant Doritos. (Trust me, it's not as wonderful as it sounds. 😑)

• If Docetaxel (Taxotere or Taxol) is part of your "cocktail" 
• You may find yourself with what I've begun calling "tissue paper flower skin." Even scratching or rubbing on spot too vigorously may result in damaged skin which must be handled with care. I've used more Polysporin and Band-Aids in the past couple of months than in the previous several years! Oh, and those wonderful percussive massagers? Not so wonderful during this time. (Whoopsie...😬) Prepare to have the driest skin of your life. Investing in good lotions/lip balms for sensitive skin is a must. (Aveeno, CeraVe, and La Roche-Posay are all good brands to try.) Oh and good ole' Vaseline may just become your new best friend. 

• Taxane Syndrome is real. It's basically a pain syndrome that affects any muscle you may have...so yeah, your whole body. It can include achiness, tenderness, and spasms. Thankfully, there are good meds to control the worst of this! (And watching your muscles spasm IS entertaining!)

• Your inner tissues may also become sensitive. I mean anything from the inside of your mouth, (there's a numbing mouthwash called Dr. Akabutu's Mouthwash that works wonderfully for this) to a super sensitive nose that may develop sores on the inside, to an inflamed stomach lining, which may cause diarrhea. Your throat may feel sore and swallowing may be uncomfortable and your gums may become sensitive and bleed easily. Provided you're not bleeding unduly (a little bleeding from your nose and gums is expected) carry on doing what is comfortable, just don't blow your nose too vigorously! (Make sure your toothbrush is super soft and now is NOT the time to begin flossing!!) TMI WARNING: Just make sure that you're not excreting blood out of your lower plumbing. That's bad. (Google photos if you're curious - I'm not about to post any of those! 😁) 

• Icing your hands and feet during the actual infusion helps lower the possibility of suffering neuropathy or losing your finger and toenails. I have several nails with a purplish tinge to them, along with the expected flaking/peeling, but I can't say that I've noticed much more damage other than that. Having said that, I faithfully ice my hands and feet for 15 minutes prior to the infusion to 15 minutes post-infusion. The first 5-10 minutes are miserable. You start to question your sanity, but then you get used to it (this is from someone who is never without slippers in winter...🥶) and as long as you're distracted, it's amazing what you can ignore. I usually watch a show/movie during this time, as your hands are kinda busy. 

These are the products I purchased from Amazon. They all work, 

though differently, and I switch halfway through to obtain the best results. 

Yes, I carry a cooler to my infusion appointments! 

Maybe this isn't an issue for you, but when I told people that I had cancer, almost without fail, they told me that I was strong and would make it. That's great! You'll want and need cheerleaders, but I was worried that I wouldn't be strong enough; I was worried that the battle would overwhelm my ability to cope. Every time I heard the phrase "you're strong" I felt as though someone had placed a heavy cloak made of lead onto my shoulders, kinda like the x-ray aprons they use at the dentist. The burden of "being strong" was more than a bit intimidating. However, having been through 4 infusions, I no longer feel that way, because, guess what? I am strong!! Well, sort of. As a woman of faith, I know that whatever strength I've found, the source is God. Trust me, I reached the end of mine, (which, incidentally, didn't take much - I was right to fear not being strong enough 😞) but the power in the name of Jesus picked right up where my strength failed and now I know that whatever life throws at me, I can take it, provided God is with me. There's a song by Lauren Talley called "My Life Is In Your Hands" that has become my theme song. Enjoy!

You don't have to worry

And don't you be afraid

Joy comes in the morning

Troubles, they don't last always

For there's a friend in Jesus

Who will wipe your tears away

And if your heart is broken

Just lift your hands and say

Oh, I know that I can make it

I know that I can stand

No matter what may come my way

My life is in your hands

With Jesus, I can take it

With Him, I know I can stand

No matter what may come my way

My life is in your hands

So when your tests and trials

They seem to get you down

And all your friends and loved ones

Are nowhere to be found

Remember there's a friend in Jesus

Who will wipe your tears away

And if your heart is broken

Just lift your hands and say

Oh, I know that I can make it

I know that I can stand

No matter what may come my way

My life is in your hands

With Jesus, I can take it

With Him, I know I can stand

No matter what may come my way

My life is in your hands