In May of 2018, six months post diagnosis, if you had asked me where I thought I would be in my recovery, I would have said, ‘preparing for my return to work’. I would have told you that I brilliantly and practically, planned to have one of my daughters, Victoria, home with me through out the summer and it was the perfect way for she and I to reconnect after a challenging number of months since my diagnosis of Acute Promyelocytic Leukemia. I would have told you, ‘Heck ya I have the energy to keep up, and I am in great spirits and we will laugh and play so much in the summer sun’. That is NOT how the summer went.
In fact, I’ve had a hard time motivating myself to write this article because I’ve been pretty down. I am still incredibly sun sensitive and just finishing my next round of ATRA which has dried my body out and renew my fear of the sun. My lungs have not been able to withstand the humidity that has completely robbed me of outside time, and my energy is still fleeting making parenting exhausting and emotionally draining for my whole family and I. I may even be willing to admit at this point that I’m battling depression. This is not a cry for help. Instead, it is an admission that I am not Superwoman. An extremely tough reality for me to face. You see, in my opinion, I’ve always been like titanium…or the Energizer bunny. Both analogies entertain me to no end. The thing is, recovering from cancer is not the same as recovering from the flu. And I am not titanium. Most people get the flu and it really sucks for a few days, maybe a week or even two to fully bounce back…but you know you’re going to bounce back. Life is going to move on and eventually, you will have forgotten that you even had the flu. That isn’t how cancer and cancer treatment work. I will never live without fear of the sun. I spent most of my life basking in the sun. Tanning was one of the most relaxing things to do in the summer. It was like a warm hug. Now, I’m afraid of it. I’m also afraid of the sunscreen I need to use to protect myself from it. I am also bitter about the restrictions I now face because of it. I will never be the same and I now have to admit that harsh reality, and the harsh reality that it is going to take more time than this summer to achieve my ‘new normal’. Mind you, that doesn’t mean that new normal can’t be fabulous! After all, check out this new hair!
I can honestly say that I feel that I’ve been luckier than many as it relates to how my body has coped with treatment…or maybe it’s my ability to mentally compartmentalize and separate my emotion from my physical challenges to date. Regardless, I thought it might be helpful to put together a list of side effects, some common and some not so common, as well as some of the tricks to manage them. Please note, the following is based on my personal experience only and you should always consult your medical team to find out what is the best option for you. I hope this helps.
This can certainly be an unpleasantry that we have to deal with during an already unpleasant time. When I was diagnosed and landed in the hospital same day, I thought I would fill my body with fresh fruits and vegetables and went to town on raw carrots night one. Well, I’ve not felt acid reflux like that since I ate peanut butter in the middle of the night at 7 months pregnant. It was extremely uncomfortable and even made it hard for me to breathe laying down. Needless to say, I didn’t eat anymore raw carrots. Firstly, raw fruits and vegetables are advised against for those who are neutropenic, which I did not know at the time. Secondly, for whatever reason, your body may have a hard time digesting them during treatment. That said, there are lots of options to help manage this. I took a number of steps to help myself including eating small meals, drink lots of water, I would sleep sitting up just a little bit as I found sleeping flat on my back very uncomfortable. When these simple things weren’t cutting it, I opted for medication to help. As always, I would recommend being vocal with your medical team about how you’re feeling and discuss the option(s) best for you.
I found bone pain to be the worst in the first round of treatment. I used Dilaudid to help manage the pain. This is possibly a long term challenge. If the bone pain is a result of losing bone density, many long term complications can occur. Make sure your health care team is aware.
This was a new term for me. During the first round of treatment, my heart rate dropped to 38 beats per minute. I will never forget the feeling of laying my head down at night and not being able to feel my heart beat. It was terrifying. Bradycardia is a term referring to a below average heart beat. As a result, I wore a heart monitor for a couple of weeks until my heart beat returned to normal. It took some time for that to happen. I can distinctly remember waking up in the middle of the night and feeling like I had woken up in the middle of a marathon race. My heart had only risen to 60 beats per minute, still pretty low on the average scale, but after hovering around 40-50 bpm for 2 weeks, it was painful for it to pick up like that in the middle of the night. Though, I was thankful for it. Probably best to avoid hot showers with a low heart rate as the hot water can make you heart rate drop. Also, listen to your body. If you feel tired, dizzy, faint, lightheaded, don’t push yourself. This is not the time to be a super hero.
CHEMO BRAIN/CHEMO FOG
I’ve always been a forgetful person so I felt partially prepared for this one. Written lists, calendars and phone reminders are life!!! If it works for you, keep a journal close to you. The worst part of chemo brain for me is, I forget conversations and events. I feel most people are understanding of my forgetfulness but writing down important details helps me manage my home, kids and self MUCH better. If writing isn’t an option, maybe you could ask your health care provider whether you can use an audio recorder at your appointments so you have the details handy. Most phones have one installed at purchase.
My experience has been that chemo brain improves over time. For some, it seems to be quicker than others, so again, don’t be to hard of yourself if it takes longer than you hope.
This is one of the more common side effects of chemotherapy. For those of you who have had a baby, you know fatigue. Chemotherapy fatigue is unlike anything I’ve ever experienced. While there were days, especially in the beginning of my daughters new life, I thought I would pass out, I never actually did. You just do what has to be done because it’s just what has to be done. I can remember being home after the first round of treatment at the hospital and deciding to reinstate my long standing morning routine; turn soca music on, shower, brush teeth, face cream, hair (what’s left of it), makeup, all while dancing away. So, I got up in the morning and accomplished all 6 activities. I was a little gun shy about dancing. Low and behold one of my favorite songs came on and there I went…for 30 seconds…before I started blacking out. Fatigue of this variety will stop you in your tracks whether you like it or not. Your body is busy fighting for life. Give your body the time and as much energy as you can to help save you.
If you’ve seen any of my pre-how do you do pictures, you may suspect that this was a particularly devastating side effect for me. Almost all my life my hair was half way down my back and I’ll (not so modestly) say, it was gorgeous. It’s no surprise that I am not alone in feeling this way. Hair is something that defines many women. It’s something that makes us feel feminine, pretty, sexy, powerful. I started losing my hair on Christmas Eve. It would come out in clumps. I was in awe of how quickly it happened and how messy it was. On Christmas Day, after being proposed to (I said YES!), my fiancé cut my hair for me. We didn’t cut it all off. We shaved most of it with a trimmer and left the top in a cute bob. It lasted for about 7 days before I bit the bullet and he shaved it all off. I cried more that day than I cried any day. I felt vulnerable. For the first time, I felt like a sick person. It was awful. Furthermore, my scalp was sensitive and it made sleeping difficult.
While I had never heard of it until it was too late, there is a technique called cold capping that may help keep hair where it belongs. Essentially, you apply very cold gel to your head under a helmet to narrow the blood vessels in your scalp. This is said to help the hair follicles from letting go of the hair. Click on the link above for more information.
There are a number of organizations that make wigs, either from synthetic hair or real human hair that you may be interested in trying. I’ve heard the synthetic wigs can be itchy and hot. The quality of the wigs may vary so check your sources before you pay up. Just Google ‘wigs for cancer’ and several options will come up. Additionally, you could check out ‘Community Support‘ on the home page menu for organizations like Pink Pearl that can help.
Hats/Head Scarves and Covers are the options I went with in the first couple of months after my hair fell out and during my transition to being bald. It was the middle of winter so the timing worked well for me. As treatment progressed, I found my body temperature increased significantly. For this reason, I had to stop wearing a hat while I was indoors. I felt embarrassed at first. After a while, I came to terms with it and showed my bald head. There were a number of times I was approached in the hospital by people who felt inspired and encouraged to do the same. I didn’t realize that would be a by-product of my decision to embrace it and that made me feel happy.
After the hair on my head fell out, and 3 weeks before my eyebrows and eyelashes fell out, I started using a lash serum by Revitalash, intended to thicken eye lashes. I was very relieved to discover it works! While probably about half of my brows and lashes fell out, I already had enough new growth to prevent them from looking bare! With a little bit of eyebrow pencil and mascara, it was unnoticeable that I had lost any at all! While there are a number of different brands that do the same thing, I would caution you to do your research on this as some may discolor your skin.
One of the less mentioned hair woes is the loss of nose hair. This will happen. My nose hair fell out before the hair on my head fell out even! While it doesn’t sound like much, expect to have Kleenex close at all times. Since there won’t be any hair there to stop nasal drip, you will need them!
Most medical teams will advise against shaving of any kind during the period that you are anemic and/or neutropenic. One of the benefits of hair loss during treatment is you won’t have to worry about cutting yourself shaving.
It took about 2 1/2 months for my hair to start growing back. When it does, it’s not thick like when it fell out. It’s fine and may be lighter in color, like baby hair. It’s been 7 months since my hair started growing back and I must say, I love my short hair. I’ve been having a lot of fun with it. I can’t honestly say I would ever grow it all back!
Headaches have been a major problem for me during treatment. One of the medications I take increases cranial pressure which can lead to extreme migraines. I did my best to manage them at home by drinking 2 – 2.5L of water a day, avoiding screens, light and sound but ended up in the fetal position bawling despite my efforts. Acetazolamide was prescribed to help reduce the pressure in my head. This coupled with Dilaudid helps take the edge off. As mentioned, my headaches were caused from pressure from medication. This may not be the reason for your headaches so speak with your health care team for the option best for you.
The only hearing changes I have experienced is prior to diagnosis. I noticed a sound in my ears, sort of like rushing water, which resolved itself once my bleeding came under control. However, I have heard of people experiencing hearing and sight changes during treatment. Some causes may be quite severe and should be noted with your medical team as soon as possible.
INFERTILITY AND SEXUAL CHANGES
Unfortunately, one of the common side effects people face during treatment is infertility. Women may find they stop having a menstrual cycle. It may come back or treatment may cause early menopause. If you have some time between diagnosis and when you begin treatment, speak with your family doctor or gynecologist immediately about your options. For the ladies out there, maybe freezing your eggs is an option. For men, possibly freezing sperm. You may want to do some research regarding what, if any procedures are covered by OHIP or your insurance company.
Sexuality will undoubtedly change during treatment also. The fact is, you will have no energy, you will be cytotoxic and your confidence may have taken a hit as a result of other side effects. Don’t put too much pressure on yourself on this front. Your fight is for your life and your confidence will improve as will your libido. When it does, there are some challenges you may face such as changes in self producing lubrication and muscular changes also. It’s possible that psychological challenges may cause challenges also. My best advise is to be open and honest with your partner. You may need to get creative, at least for the short term. Speak with your medical team or gynecologist about how to manage these challenges.
LOSS OF APPETITE/TASTE CHANGES
This is another tough side effect for many people. If it isn’t bad enough that you feel like absolute crap, you may not be able to taste your food either. Anyone who knows me will tell you that I’ve been a peanut butter addict my whole life. That is, with the brief exception of the first couple months of chemo. My beloved peanut butter had no taste. It was gross and I was sad! While this was an absolute disappointment, I was still able to taste enough good food to eat healthy. Appetite was never an issue for me either until I started methotrexate. Now I find once in a while, I have to remind myself to eat. Using the MyFitnessPal app to keep track of my daily intake is a good reminder for me to eat small meals often.
I wish I could provide more content here. If you have any, please do let me know what worked for you and I would be happy to add!
Strap in for this one folks!!! This is the hardest topic for me to address. It is no surprise that this is a topic near and dear to my heart. I’ve written a number of articles on my emotional journey already. If you’d like to check them out, they can be found here: 7 Tips for Coping with Emotions During & After Cancer Treatment, Survivors Guilt: The Precipice of Self-Sabotage and How Cancer Healed my Relationship.
To oversimplify a very complicated topic, this is one of the hardest emotional rollercoasters you will likely ever encounter in your life. There will be ups and there will be downs. Some of them wwaaayyyyy down. Deciding how to manage through these is a highly personal choice. You may find you need to try a couple of things before you figure out what is right for you and you may need to try different things at different times depending on the source of the stress. Being mindful that some of your mood changes may be medication related is also important.
In my circumstance, I didn’t have much prep time prior to being admitted to the hospital for immediate treatment. I decided what my focus would be while I was there and I quickly chose a mantra, and that was ‘My family needs me’. This is what gave me the strength to get through the first couple of months. While this mantra continues to be important in my recovery, I’ve had to figure out different strategies to deal with the barrage of feelings since. Since my bone marrow was so packed with leukemia cells, we had to blast my system quickly and hard. This leads to a concern of differentiation syndrome which means a build up of dead cells in your lungs, which can be life threatening. To avoid this complication, steroids are given to help rid the body of the dead cells. Steroids are well known for causing mood changes. Knowing this, there wasn’t much I could do to control the frequent bouts of crying in the hospital. I had to just accept that this was part of the deal. I was fortunate enough to have kind nurses who would give me a hug or a backrub while I rode out the overwhelming feelings.
I was also very particular about who I spent time with during the most ominous months of my treatment. I found people with anxious or negative energy were not helpful to me. I limited contact with them until I felt I could better protect myself from that energy. I think there are some people who may not be as fortunate as I was to have a family who put aside personal grudges and came together to help get me through this. If that’s the case for you, be your biggest advocate and verbalize what you need from your support system and when you need it. If they aren’t willing to comply, see if there are public resources that can help. The last thing you need to deal with is a family fighting over whose going to be your primary caregiver.
At times, I find I’ve needed to talk and the more I feel my audience shies away from the topic of cancer, the more I feel the need to talk about it. We’ve become a dispassionate society and more than ever compassion is what people need to show and receive. I also strongly believe there isn’t enough awareness about cancer types, causes, treatment, support, etc. and I feel obligated to help people get comfortable with this. Others may like to use the social workers found in the hospitals for someone to talk to. There are also a number of organizations listed on the ‘Community Support‘ menu on the home page that provide patient support and access to counselors, psychotherapists, massage therapists, acupuncturists, etc.
What I have found to be one of the most empowering outlets which helps me feel both mentally and physically stronger is walking. There were days that 100 steps was all I could do. But I did it and it made me feel like I had a little more control of my life. It made, and continues to make, me feel happy.
Whatever you need to manage through this journey, make it your priority to get it, do it, write it, say it, cry it, scream it, distract yourself…whatever you need. Everyone will understand. And those that don’t, don’t deserve to have an opinion.
While I was in the hospital receiving my 4 infusions of Idarubicin, ‘The Red Devil’, I developed a pretty nasty case of mucositis. I had two strips of lesions running along both sides of my tongue, one down the middle of my tongue and one big one in the back of my throat. As you can imagine, it was pretty tough to eat at all during this time. My medical team at the hospital offered me a couple things to help with this. Tozellis is a ‘magic mouthwash’ given to me during my stay in the hospital. It was also prescribed to take home when I was discharged. It was yellow, it tasted AWFUL and I made the unfortunate decision not to use it until it was too late.
Usually, mouthwashes to manage oral complications due to chemotherapy (and radiation) can be treated by mixing at least 3 of the following ingredients:
- An antibiotic
- An antihistamine
- An antifugal
- A corticosteriod
- An antacid
Within a few days of starting to use this mouthwash, my mouth sores started clearing up.
Pink Lady is usually a drug concoction of antacid and lidocaine. The antacid helps coat the inside of the mouth and throat and the lidocaine numbs everything for a little bit. Possibly long enough to get some food into your system.
During the time I dealt with mucositis, I was unable to eat or drink without Pink Lady. The pain was so intense at times, I couldn’t even swallow saliva for fear of scraping the scabs on my tongue.
While this side effect makes complete sense, I certainly never thought about it or heard about it until I experienced it. During induction, the chemotherapy was so strong that it caused an excess amount of dead cells to leave my body. Well, it just makes sense that your nails would be one of those outlets. For a time, my nails were quite thick and strong…which was AWESOME! Until they started growing again. Then I noticed that they started peeling along the ridge that was thick. For months I worried that my nails would peel off midway and hurt. To avoid this, I polished my nails religiously with nail hardener every 3 or 4 days. It helped them look better, and helped them stay strong enough until they were able to grow out. Most of my nails didn’t crack until they were completely out.
My only warning with this is, there are studies that suggest nail polish and nail polish remover are linked to carcinogens and endocrine disruptors. So, my advice is to do your homework and understand the risk you are taking by using nail polish/remover and any other product for that matter!
I have been blessed with a stomach of steel. As a result, I have not had the unfortunate side effect of vomiting, and have experienced very little nausea. While there are medications that can be prescribed to help manage this side effect, I was easily able to manage this with Gravol.
Vomiting is never fun for anyone but it can be toxic to your loved ones. If you do experience vomiting, it is very important that your loved ones do not clean up after you. Your body is cytotoxic and contact with your bodily fluids may put them at risk. If at all possible, have a nurse do it. If a nurse is not present, keep a bucket close to you for easy clean up.
This is a less spoken about side effect which many people experience to some degree. Neuropathy is a result of damage to your peripheral nerves, often causing weakness, numbness and/or pain, usually experienced in the hands and feet. It may be temporary or permanent. In severe cases, your treatment may even be temporarily stopped until the pain/numbness reduces. Unfortunately, there isn’t a lot more than can be done with it. There are medications that some experience relief using. Some believe orthotics help, others believe it’s better to walk or exercise the extremities causing you grief. Whatever you do, make sure if it’s in your feet, you are conscious of your balance and make sure you talk to your doctor!
Almost immediately after starting treatment, I started experiencing night sweats. While there was an increase in my overall body temperature during treatment, it was the worst at night. Many nights, I would wake up in the middle of the night and have to change clothes, maybe even pillow cases and sheets. The very unfortunate thing is, there isn’t much that can be done about it. I found wearing fewer clothes and fewer blankets helped to regulate my temperature a bit better but the reality is, I just had to deal with it. It is very important that you check your temperature regularly. If you have night sweats, it might be hard to tell if you have a fever or not. Of course, fever during chemotherapy can be life threatening and needs to be addressed immediately if it occurs.
Keeping your skin moisturized and undamaged during treatment is crucial to avoid complications. Our dermis is our largest organ, thus making it’s damage a major concern during treatment. That said, keeping our skin healthy during treatment is really tough to do. Especially for those of us taking ATRA. Challenges I experienced were chapped, peeling and cracked lips. In fact, my lips peeled daily during the first round of treatment. Other possible skin issues include dry, cracked nipples, lady parts and rectum. The rectal cracking is of particular concern because treatment can also cause diarrhea and if your body is not able to fight infection, or even it’s own bacteria, cracked skin during diarrhea leaves you very susceptible. Remedies I used to help was Blistex for lips several times a day. I used an extra strength moisturizer as well as coconut oil several times per day. It is recommended to use scentless moisturizer for sensitive skin. I opted for St.Ives moisturizer with vitamin E and aloe. It worked well for me. Other options are Utter Butter for cracked nipples, water based lubricant for sore lady parts and hemorrhoid cream for sore bum.
Swelling may be due to a number of reasons, some of them quite serious so make sure your health care teams knows right away if you are experiencing any. It could be fluid increase from treatment, it could be poorly functioning kidneys, it could be blood clots from a Hickman or PICC. It could even be getting back to regular activities when you start feeling better. There is medication that can help you pee if your kidneys are having a hard time, you may need ultrasounds to check for blood clots too. If it’s related to getting back to regular activities, which has been a big problem for me, it’s possible you may need to pace yourself. Pacing isn’t something I’ve historically been good at so using ice packs and elevating my feet has been a big help.
I gained 10 lbs in the first 3 days of treatment. Thirty days later, I had lost 20 lbs. Weight gain/loss is a really tough side effect for many, both physically and emotionally. The fact is, at a time you’re trying to cope with fighting for your life, losing your hair, being completely dependent on others, the last thing you want to feel insecure about is being heavier or thinner than you like, or is healthy for you. The fact is, this is just one of those things that is going to happen, especially for those taking steroids and unable to eat.
Your weight is very important to monitor as the quantity of medication is often based on your weight. So big ups and big downs can mean adjustments to doses.
I didn’t focus too much on how much I weighed through treatment but I did focus on what I ate and the exercise I was getting. Keeping in mind that we aren’t talking about a typical time period of life and cooking 3 square meals each day is not realistic, having help cooking healthy meals, eating lots of whole foods, eating small meals and planning around my medication cycles was important. As an outpatient, instead of eating hospital cafeteria food, most days my support packed healthy snacks for me to munch on at the hospital. Family and friends also pulled together to cook for my family.
Every day I made sure to assess how much energy I had. When I had enough, I walked. While fitness apps and such suggest a minimum of 10,000 steps a day, I felt accomplished if I walked 100 steps a day. It helped with my confidence and helped keep my body active while being pumped full of toxins. Not only that, it was a good opportunity for me to make some new friends!
Once I finished IV treatment at the hospital, I started focusing attention on what I was eating. My diet hadn’t been the worst before, but it certainly wasn’t the best either so I started researching a healthier diet, learning how to prep easy and nutrition packed meals and I also started using an app called MyFitnessPal. Using the app allowed me to see where I was taking in useless calories that weren’t giving me the nutritional content I need. For instance, eating a piece of bread is worth approximately 100 calories but provides no, or next to no, vitamin a, c, iron, calcium or protein. I’d rather use those calories for something that is going to help my body recover.
URINATION/KIDNEY & BOWEL FUNCTION
Either as a result of failing organs or as a result of medications, you may experience kidneys and bowels that don’t function well. Even with the 6 or so litres of fluid I received in a day, my body wouldn’t pee on it’s own. There are medications that can help manage both kidney and bowel function so make sure they are aware of any changes. In addition, diarrhea can be a sign of c-difficile, which is a deadly bacterial infection commonly picked up in hospitals. No one likes talking about poop (except my Grandmother), but it could save your life or the life of those around you!
If you have any other side effects you think would be helpful to add, please write me and I’d be happy to review.
That’s it for now. Take care of yourself. You got this!