As I began the fourth and final phase of my treatment today (called continuation ~1.5 years long) I wanted to reflect on the past 9 months. The farther along I get the more I seem to forget about what I went through in the beginning of all of this and I thought it would be good to document it.
My protocol is called the Dana Farber protocol and consists of four phases and lasts a little over two years.
Phase 1 - Induction Phase (1 month in hospital)
This was certainly the most intense part of my treatment. Not only are you and your family grappling with the diagnosis but the drugs and experience are very hard on your body and mind.
Side effects during the induction phase consisted of (but were not limited to):
- Could barely walk - I had to be wheeled around in a wheelchair everywhere for most of my stay. I slowly started going for walks (forced by my family) but would just shuffle at the slowest pace anyone has ever walked from one end of the hallway to the other while attached to my IV pole
- Very, very, very low energy
- One very, very severe “electric” headache
- Fevers (and intense chills a few times where I asked my siblings to literally cover me in warm blankets and basically lay on top of me to help the shivering be less intense because it hurt my broken ribs to move like that)
- Taste buds changed - things tasted very different. I wanted nothing sweet (I still don’t really want any desserts or sweet stuff most of the time - even fruit!) and hated the taste of water for a while
- Smells changed - hated certain smells, especially hand sanitizer! This went away after the phase ended
- Loss of appetite
- Loss of fine motor skills (writing and drawing was very difficult and messy!)
- Numb/tingling fingers and toes and some stabbing pains in my feet and legs (called neuropathy). The numbness and tingling has still not gone away.
- “Bad” veins that make taking blood or getting IVs very difficult and means having to be poked many extra times
- Hair loss
- Nausea and vomiting
- Changes in skin
- Weight loss (muscle loss)
- Weakening of fine motor skills
- Mood swings from steroids
- Not able to sleep because of steroids
- Mouth sores which made it very painful to eat
- Stomach aches
- Heart fluttering/racing
- General discomfort
- Flu-like symptoms (aches, pains, headaches, fatigue)
- Mental health was obviously effected
While in the hospital you have to get your vitals (blood pressure, temperature, oxygen levels) taken every four hours - even at 4am when you’re asleep. I got two bone marrow biopsies (a needle in your hipbone to collect bone marrow samples - the worst). I took prednisone - a strong steroid that made me very emotional, make it difficult to sleep, and made me very hungry (even for hospital food!). This was the end of July and mostly August so it was basically a heatwave with no AC on the eighth floor which just seemed to intensify many of the side effects and discomfort. In the hospital you cannot shower or drink the water (yes- for one month!!!) You had to use bottled water to do anything like brush your teeth. You get woken up every morning between 6 and 7 to get blood taken. I had to get X-rays, ultrasounds, CT scans, etc. Once they were trying to be nice- it was close to midnight and I needed an X-ray - but they didn’t want to make me get out of bed and go to another floor since it was so late so they brought a portable X-ray machine which was super cool.
I also had to measure and record all ins and outs (how much you drink and how much you lose when you go to the bathroom) which included having to have a weird apparatus in your toilet which just seemed SO overwhelming when it was hard enough to get up, get my flip flops on, unplug the IV pole from the wall (actually quite difficult in my weakened state), walk to the bathroom, and fit in the tiny bathroom with the IV pole (you had to kind of maneuver your way in backwards) in the first place. I often had to ask my family to record the data because I was too tired.
I received several different blood products through blood infusions and although it didn’t bother me it seemed a bit creepy. Obviously life saving and necessary so go donate blood if you can to help people like me!
There were several other side effects I had to deal with that are probably TMI for the average reader 😂
In this phase we tracked my ANC (absolute neutrophil count) which counts a type of white blood cell. A nurse would come write the number on the calendar each day after they got the results from my morning bloodwork. Normal counts are 1500 - 8000. If these counts drop under 1000 it means your immune system is weak. At one point this number reached 0! This is supposed to happen and is because the chemotherapy and steroids are killing all of the bad “blast” cells but are also killing many of your good cells at the same time which I guess is why it’s so hard on your body. This is also why it’s so important not to be around anyone who is sick and for you and everyone around you to be very careful about bacteria by washing and sanitizing their hands. They even had to use a different bathroom than me in the hospital. I often wear a mask when I am going to get bloodwork done or if I’m around anyone sick (which I avoid as much as possible) and even have a bottle of hand sanitizer in my front entry for people to use now.
Hospital Food - This could probably have its own blog post. The food was pretty rough. Not only did they have a lot of unappetizing things (I’m picky but not THAT picky) the system does not lend itself to patient schedules. Sometimes you would go downstairs for X-rays or other procedures and by the time you got back your food had been delivered who knows when and was already cold. You also have to order your food two days in advance so you don’t remember what you’re getting each day or if you even feel like eating that food anymore. I read that they’re changing the food program (maybe to be more like the program at the IWK which I’ve heard is better). I stuck mostly to spaghetti, mac and cheese, salad, and muffins. The lady that often brought me my food asked if I wanted to get the “rehab” menu which I guess consisted of things that not every patient is allowed to eat. It was basically just one option added to the lunch menu each day but sometimes it was something fun like chicken fingers and fries or pizza (definitely was not something I would label pizza, but was edible at least).
I lost at least 20 lbs the first month in the hospital (It did give me a nice jawline and cheekbone definition that kind of suited the buzz cut. But don’t worry, I’ve gained most of it back at this point 😑🙄). This wasn’t totally due to the food - a lot of it was muscle loss from the treatment and lying in bed for a month, however, the food certainly didn’t help. I couldn’t even think about macaroni and cheese long after I left the hospital. One of the first days I remember I ordered a turkey sandwich and it was literally a piece of dry turkey meat in between two slices of white bread. No cheese, no mayo, no lettuce or veggies. The staff was sweet and helpful (the menu and program obviously had nothing to do with them) but the amount of food waste was crazy and when you want to help people maintain their weight and get stronger you’re probably going to want to create a more nutritious and tasty menu. I remember when I started getting a little better towards the end of my stay people brought me a lot more home made meals because I just couldn’t eat a lot of the hospital food anymore. I remember I craved Subway for weeks (couldn’t eat much of anything with mouth sores) so when I finally got to eat it Otmane brought me a sandwich and I was so excited and finished it in about one minute. I had lots of cravings during this time and couldn’t wait to be able to eat it. I would even send messages to my mom in the middle of the night telling her how much I wanted instant noodles, her chicken and rice casserole, Japanese curry, and a variety of other random meals.
There were some positive things - the nurses and staff were so caring and amazing. There was an entire team of nurses, oncologists, pharmacists, residents, etc. taking care of me and following my progress. Everyday several people (normally family members) would visit me so I was never lonely. I didn’t want to talk a lot of times but it was just nice that people were in the room. Even if it didn’t seem like it was helping me based on my overall demeanour it was comforting to have people around. For the first few days after my diagnosis people even slept overnight in a little cot beside me. I got many thoughtful messages, cards, and care packages that definitely brought a tear to my eye and when I look at them or think about them they still do! Otmane, his mom, and my mom each got me fun PJs as that’s all I wore for 1 month. My family gave me leg and foot massages every day in the hospital. When I still had hair the nurses or the CTA would wash my hair for me since I couldn’t shower and I could almost imagine I was at the spa for a second. My family doctor called me several times to see how I was doing (even when he was at his cottage on vacation!) and even came into the hospital once to see me and another one of his patients.
A random story from induction phase:
The hospital beds are able to be adjusted and controlled by buttons on a panel on the side of the bed. One day the bed developed a mind of its own and began tilting backwards while I was getting my hair washed by some nurses until my feet were up in the air and my head was close to the ground. It happened again a few hours later and started folding up on me. Luckily I am a younger patient and was able to jump out of the bed before it folded me in half, but I wouldn’t want to see that happen to the majority of patients who are much older and wouldn’t be able to move as quickly. I got a new bed later that day.
Phase 2 - CNS (Central Nervous System) phase (2 weeks at home)
Leaving the hospital was a little scary - I had become accustomed to having access to nurses and other resources 24/7. I remember packing up all of my stuff with my mom and sister and getting instructions from the charge nurse. Then I drove home with my sister (during this phase and for a couple months afterwards I always needed a pillow and to lay down in the car). When I got home it was very surreal. I actually forgot I hadn't taken stairs in one month and when I got to the few steps leading to my door I tried walking up at the speed I normally would, only for my legs to seize up after about two steps. For the next several months I had to put both feet on each step and taking it very slowly, holding on to the railing for dear life. I was very tired and had no energy. I could barely walk around. My family had to come cook for me or bring me food. It was hard to sit up for long periods of time and I mostly napped or went on my phone or just got lost in thought. I stayed in my PJs on my TV room couch all day and really had no motivation to take care of myself at all. During this time I had many spinal taps/lumbar punctures to ensure there were no immature cells in my central nervous system.
This phase also consisted of 8 rounds of brain radiation which definitely sounded scary. It’s lucky I’m not claustrophobic because you wear a very tight mask that has been specifically made to fit your face, then it gets bolted to the table you lay on making it even tighter. It has no mouth or eye holes so you just breathe through your nose. It’s so tight you can’t even move your lips to talk or open your eyes. They play music to make the process bearable and more relaxing. A couple song highlights that I can remember were the Rankins “Mull River Shuffle” and something by the Tragically Hip (can’t remember which song now). The technicians watch you on a camera to make sure you’re ok since you can’t talk and announce to you over a speaker when they’re going to begin. The machine has a green laser that seems to mark your head, making sure it’s properly aligned. Then when the procedure begins it moves around your head making noises. Like in all parts of the treatment, everyone experiences different things and side effects. During the last minute of radiation I would see a bright blue light, hear a high pitched buzzing noise, and then smell a really gross chemical smell. After the first round I learned to hold my breath once I saw the blue light. When the technicians came in after the radiation was finished the first day I asked them what the blue light had been to which they responded, “What blue light?”. Everything I was experiencing was due to the different parts of my brain they were “touching” with the laser I guess. It was kind of like in that Heritage Minutes commercial when they touch different parts of the woman’s brain and she senses different things that aren’t actually “real” (like burnt toast!)
I took medication to avoid nausea so I didn’t have too many side effects from the radiation besides hair loss though the list of side effects (immediate, future, and long term) that they had to tell you about before you agreed to the procedure was a bit scary. I was still very weak at this time so it was difficult for me to sit up in the waiting room for long periods of time without becoming exhausted and/or getting a headache. It’s crazy how just sitting up in a chair could be so tiring!
Phase 3 - Intensification (30 weeks at home)
Intensification seemed daunting at the beginning because it would be so long and it included a needle each week in what they call the “hip” but is actually your butt. I had gotten this same needle once in the leg in the first phase and had been very painful so I was anxious about having to get it 30 times. Beginning each phase is nerve wracking as you never really understand what it entails and how your body is going to react. It turned out that the needle wasn’t bad at all (just a little pinch). Each week I had to get bloodwork done, then the next day I would get the needle, and throughout the whole phase I had to take lots of medication at home. Some days I had to take as many as 29 pills. Every third week I had an appointment with my oncologist, IV chemotherapy, and had to start taking the steroids. I also got a different injection every 30 days from my family doctor. Every 16 weeks I got a spinal tap/lumbar puncture.
I also got a flu shot which I had never done before but now totally understand why everyone should get them - people like me, babies, and the elderly are at serious risk if they get sick and by getting the flu shot you are helping to protect them. I have to be very careful about germs and bacteria. My food has to be very well cooked, I can’t eat certain things like sushi, sprouts, unpasteurized products, deli meat, etc. I also can’t be around anyone who is sick, even with something as simple as a cold. If I get a fever I have to immediately rush to emerg. in case it is being caused by an infection and I will probably get admitted to the hospital. During phase three this happened twice. I had to stay about a week each time which meant back to being poked and prodded constantly, hospital food, no showers, being woken up at all hours, measuring ins and outs, being seen by the infectious disease doctors, etc. Luckily I was a bit stronger at this point and could do more walking, make my own breakfast in the shared kitchen, and go to the family room (there was a TV which was good because I wanted to watch Ellie compete at the gymnastics World Cup in Doha).
*Side note - if you were born between something like 1975 and 1991 you may not have gotten a second MMR vaccine as they were sometimes only giving one during that time. Check with your doctor to see if you need it to help protect the people around you that have weakened immune systems! Be like my brother who can’t stand needles but got both the flu shot and the MMR vaccine just for me 😇
Additional side effects during this phase:
- A much longer phase, which was difficult because the chemo accumulates in your body and sometimes cause some very difficult side effects
- The most difficult side effect was the bone/joint pain which was severe at times. This was due to the withdrawal from steroids every 3 weeks
- Weak, peeling nails that are constantly ripping off halfway down and horizontal indentations on the nails that mark the cycles of chemotherapy
- Changes in skin
- Bloating/swelling (many parts of my body, but mainly face and stomach)
- Weird ringing/noises in ears sometimes
- Chemo brain/fog
- Sensitivity to the sun
- Sensitive teeth
- Sensitive to hot and cold temperatures
- A lot of tension all over and teeth clenching (from stress, I guess)
- Dizziness, shortness of breath, and feeling faint after baths or showers (for the first few months)
- Having to rest while running errands or shopping (for the first few months)
- Very strange dreams (caused by steroids)
- The sensation that my tongue was huge (caused by steroids)
- The sensation that the room I was in was suddenly growing or was gigantic (caused by steroids)
- I have labeled myself a potato as that is what my face and body remind me of at this time
The first couple of months I didn’t want to watch anything, read anything, or do anything. I just continued laying on my couch in my PJs all day every day. Masters courses helped me avoid “chemo brain/fog” to an extent I think as it forced me to use my brain, though I still got mixed up and forgot things sometimes. I was still quite weak for the first half of this phase (couldn’t even squat down and get back up).
Some positive things during this phase were having “VIP” no wait status at the blood collection clinic, getting to know the blood technicians at the clinic who can deal with my crappy veins and help make me less anxious (I really hate needles), getting much stronger and starting to feel normal again during the last few months, continuing my masters, being able to start cooking and tidying, starting to read and watch movies and shows, knitting, having my hair start to grow back, getting strong enough to do some simple exercises and to go for walks, going to a Look Good, Feel Better workshop, and having an amazing, funny, caring team of nurses at Medical Day Unit that administer my chemotherapy.
I also had many kind people in the community bring meals at the beginning when I couldn’t cook for myself (try cooking when you can barely stand or walk or lift the pots and pans) which was very helpful and sweet. It was also Thanksgiving, Christmas, Easter, and many people’s birthdays in my family during this phase which was nice, though these celebrations always seemed to fall during steroid withdrawal or on days that I had to get bloodwork done. All in all this phase was very difficult, but easier than I predicted most days.
During my last steroid withdrawal a couple weeks ago I had the worst joint/bone pain (mostly in my knees) I’ve had so far which involved waking up one day at 5am in pain, taking Tylenol, and using heating pads to try to help it go away, the pain not going away and ending up bawling all morning, my mom coming over to massage my legs to help me relax and feel a bit better, having to go into the hospital (could barely walk) for chemo and crying there too because they couldn’t get the IV in a vein and I had to be poked extra times, coming home and having a 3 hour online class, then the severe pain coming back and having to call my mom to come back over. Then Otmane came home from soccer with a sprained ankle and my mom called my dad to bring him some ice packs. I certainly never pictured having my mom and dad sitting on my bed massaging my legs and feet as an almost 28 year old. I'm sure the four of us were quite the sight!
Some good news about the last 3 week cycle was that my APC (similar to ANC) was up to over 6000! Also, I did not have to get another bone marrow biopsy like I thought I would!
As I reflected upon the past months I also wondered what it was like for others and what I seemed like during the first couple of phases. I asked those who saw me during that time for their perspective and here is some feedback I got:
“I remember how weak you were the first time walking - like an elderly person”
“I think you were a bit more quiet and reserved the few months which is natural seeing as how much you were going through. That’s how I would be too.”
“It seemed like you were separated from your own experience at the start. As if you were seeing all the things happening to you, happening to somebody else. It seems like it took time for the reality to sink in, which isn’t necessarily surprising, just...it seemed hard, I guess. I think I noticed all of this because you have always been so grounded in your identity, but it seemed like getting sick was such a seismic shift that maybe you just didn’t feel like you for a while.”
“When you told us in the group chat that you had something to tell us, I figured it was either going to be super good (ie preggo) or super the opposite. Turns out it was the opposite! I remember before you told us I was showering & I just had this moment of pure dread, like what if she’s going to tell us some really hard news? That was followed by the most intense real dread I’ve ever experienced. Shower thoughts, right?
Anyway, I don’t want to characterize your experience for you but I was scared. This was the worst, actual really bad thing that had happened so far in my life. How could it be happening?? We were all together in NY literally days before!! Wtf. Anyway, Then when I called you post-dx I figured you’d have to manage everyone else’s feelings & shock so I tried to be cool but I was internally freaking out & after we hung up I sat on the curb & bawled & everyone walking by probably thought that my boyfriend had just dumped me or something, & kept rolling their eyes, looking uncomfortably at me & I just wanted to yell at them like my cousin who is the sweetest, cutest girl has cancer you f***heads!!! I’m going to cry if I want to!!!
Anyway, I was very concerned when I came home & you were in the VG & seemingly were in low spirits & didn’t want to do anything. That was quite scary, but also understandable; I figured you were processing (as I would be) & also you were past the point of managing other people’s feelings. Things continue to improve, but the early days were a real trip, I tell you.”
“First few days/weeks, even that month in hospital you were obviously very sick, weak and in a lot of pain. Especially with your broken ribs and breathing was painful with your ribs and collapsed lung. Even still, you tried not to show it as much as you could. You tried to be tough in front of everyone. You definitely felt most comfortable with Dave and Amy by your side. They did everything they could to step up and be your person, and continue to do so. I know it was and still is so hard on your mom, and I think that those first few weeks were critical for the rest of us to step up, as she processed everything.
You were very quiet most days and just wanted company in the room, even if nothing was said. I'm sure you were processing everything that was happening. I was happy to come in and be that body of comfort. I know I wasn't the same as one of your immediate family members, but I hoped it would help you and them to get some rest and feel comfort.
When the nurses came in, you were always so pleasant, and I'm positive you were their favourite patient. I was so impressed with the knowledge you had on treatment, drugs, etc. You seriously could be an oncologist at this point! You were so tired in the beginning, but were determined to get a handle on everything that was happening. I think you maybe felt like learning about what was happening and blood levels, pills, treatments was something you could control in a situation that was very much out of your control.
You were so sensitive to smells and tastes in the beginning. I remember how hot your first room was, and when we would use the hand sanitizer, the smell would waft over to you from the fan. It made you feel sick. You could not drink water because it started to taste bad. Amy and I went to Sobeys and must have bought every flavour shot, tea, sports drink, so that you would drink something. We were determined, even though you didn't want anything to do with it.
When you came home from the hospital, we were all so happy, but scared. A world of germs and a higher risk of infection. You were still so tired, sleeping so much and didn't have any energy to do much.
Looking back now, you have become so strong mentally from this and you are the most determined, driven person I know. Not only are you kicking cancer's ass, but you are doing it while cooking up a storm, remembering all of the billions of pills you need to take each day, doing your masters courses, weekly appointments at the hospital and dealing with pain and side effects that I wouldn't wish upon my worst enemy.
You have always been strong and determined, but I'd like to think that some positives have come out of your diagnosis. You are definitely stronger mentally, it has brought your family closer together, I think especially Dave and Amy and you and Amy. It has reminded us all that life can change in a heart beat, so not to take anything for granted. We love you and will do anything for you.”
I’M NOT CRYING, YOU’RE CRYING
I will leave you with these memes that I found funny. Until next time!
I love You.