Dancing with the Devil

Going into the second round of chemo, my GPO advised me that I would be getting a double dose of anti-nausea medication moving forward to help alleviate the nausea that I experienced through the first treatment. This seemed to help a lot as I was able to eat when I got home and hold a conversation with my husband unlike two weeks prior. The only drawback though was that the medication in higher doses had side effects such as constipation and insomnia, both of which I experienced. I was so tired after chemo and felt like I could sleep all day but once I hit the pillow, I just laid there wide awake for hours. Not even a sleeping pill could help as my body was so flooded with all of the different drugs in my system.

After the second round of treatment, I noticed myself starting to associate certain words and items with chemo. Two things in particular were popsicles and ice. I had to suck on either a popsicle or ice chips while receiving the “red devil” treatment to avoid getting mouth sores (thankfully I only got one mild mouth sore in my throat the entire time which went away quickly with a prescribed mouthwash). Once I went through the third round of chemo, I couldn’t even think, look, or talk about popsicles and ice without gagging. My mind was playing games with me and I couldn’t get it out of my head. It was driving me insane. I decided I needed to do something about it because I still had more treatments coming up and I didn’t know how was I going to get through them like this.

Through my work, there’s an Employee and Family Assistance program which offers short-term counselling services for free. I contacted the program and got set up with a counsellor the following week to try and work through some of the anxiety I was experiencing around chemo. The counsellor emphasized just focusing on the present moment and to associate chemo with something positive. My mind has always been one to wander and think about a million things at once so it was hard to slow it down and focus on the present. I had to train myself to stop thinking so far ahead to the next treatment (and those darn popsicles). I also started reminding myself again that the chemo was doing good for my body and killing all of the bad cancer cells. This was a little easier said than done when I felt the side effects cumulate after each treatment.

As the treatments went on, my energy level became worse and I had this constant off feeling. It was like a touch of nausea coupled with fatigue. The oncologist said that exercise could help lessen the side effects so I pushed myself to get out for walks almost everyday, even if it was just around the block. At first, this seemed to help and I felt better when I was moving around more than when I was resting. The difficult part was getting the energy to push myself out the door but I reminded myself every time of the reward of feeling better afterwards. By the time my fourth treatment was finished though, it didn’t matter whether I was resting or moving around…nothing could shake off how I was feeling. It just lingered and only time seemed to make it fade away.

One thing that seemed to thrive though during my treatments was my appetite. I could not eat enough in a day and was eating twice as much as I normally would. Yet, even though I ate so much, I never felt full and couldn’t keep the weight on. It was like a competition with the chemo to see how much I could eat and how much weight I could gain back before the next round. But I always seemed to fall a bit short. I wasn’t losing a lot of weight but enough that I knew I needed to keep eating so that I didn’t eventually become underweight and unhealthy. My GPO later explained to me that the chemo was killing off all of the rapidly diving cells in my body, including the cells in my digestive tract. As a result, my body didn’t have the ability to uptake the nutrients I was putting in my body like it normally would and instead was going straight through me.

By the time I went into my last treatment of the “red devil”, I was worn down both physically and emotionally. At the beginning of chemo, I was usually able to recover enough to start getting out and about after a week or so of treatment. The last round though left me with this slight feeling of nausea and fatigue for the entire two weeks until my next treatment. It was starting to drag me down emotionally not being able to go out and enjoy things on any given day without worrying about how I was feeling. I couldn’t go to the store alone without getting anxiety and feeling overwhelmed. It was difficult to even drive because I felt like I was in a constant haze. The days seemed long because I didn’t have the energy to do anything and I looked forward to my husband coming home or having visitors over to get my mind off things. I just kept telling myself that this would all be over soon.

After four challenging chemo treatments, I would now be switching over to a different chemo drug called Paclitaxel for the last half of my treatment which had less harsh side effects. No more nausea and no more taking pills all the time. I couldn’t wait to move on and kick the red devil to the curb.

Bye bye red devil!

No More Bad Hair Days

Losing my hair was an inevitable part of my treatment. It was a horrible feeling but I knew it was something I would eventually have to face. I wanted to buy a wig before my hair started falling out so that I didn’t feel self conscious about going out bald and having people look at me like I was “sick”. I found out I had coverage through my extended health benefits plan to purchase a wig so I went out shopping to find something that I would be comfortable wearing. There are so many wigs to choose from nowadays depending on the style, colour, length, and thickness and whether you want real or synthetic hair. The good thing about a real hair wig is that it can be styled just like normal hair would but they can also be very expensive. The synthetic wigs are cheaper and generally are not heat proof; however, they have come a long way and now offer some heat protective ones. Going in I thought I would try a different hairstyle while I had the opportunity, but once I started trying a few on, I realized I didn’t feel comfortable going too outside the box because it would be so obvious that it wasn’t my own hair. The wig I decided on was a bit thicker and lighter in colour than my own hair but about the same length.

My hair had been holding strong through the first cycle of chemo, but going into the second round I noticed I was shedding a bit more than usual. The following day after chemo #2, I went to brush my hair and a lot of it was now starting to come out in my brush. Not just 5 or 6 strands like usual, but 20-30 strands. I knew this day would come but it was hard to know when to make the decision to get rid of it. Do I wait and let more fall out or will that just be more devastating? I looked on some forums online to see what others had done but it all came down to personal choice and what I was most comfortable with. Some felt better cutting their hair short first, while others took the plunge and buzzed it off all at once. I decided I would wait until the next day to see if the hair loss was getting any worse.

I continued to shed the next day and was worried that if I left it too long, I may wake up the next day with a big bald patch on my head. I was still struggling with making a decision on when to finally shave it so I decided to take a shower and see how strong my hair was holding up afterwards. When I took one stroke of the brush through my hair, it came back full. I knew at that point it was time. The owner of the shop where I purchased my wig had offered to shave my head when the time came so I gave her a call. We arranged for me to come in later around closing time so that we could have some privacy and I brought my friend with me for support. I didn’t know how I was going to react through it all, but I was so nervous leading up to going in.

My hair was put into a bunch of little pig tails to cut off first as it was easier than trying to get the buzzer through the whole thing at once. It felt better doing it that way too as I got to see what my hair looked like short before going all the way which wasn't as shocking and gave me an idea of what it would look like growing back. Once the pigtails were gone, it was time to shave the rest off. I don’t know that I was ever “ready” to shave my head but I knew it was something that I needed to face eventually. I managed to hold it together and at the end was surprised how empowered I felt. It was freeing in a way to not have any hair. I had no idea what I was going to look like without any hair but it wasn’t as bad as I imagined. Looking back, I’m so glad that I made the personal choice to get my head shaved rather than the chemo taking that choice away. I think I would have been more devastated had I waited and let my hair fall away in pieces in front of me.

I left the store that evening with my wig on and went back home to show my husband. He couldn’t bring himself to watch me get my head shaved as this whole diagnosis had been really hard on him so far. When I did the big reveal later on and took off my wig, he was incredibly supportive and told me how beautiful I was. We had a bit of a laugh too because we now looked like twins with matching bald heads. No hair products needed in this house! The next day, I went for lunch with a friend and wore my wig for the first time out in public. It felt a bit awkward and I struggled with whether to wear one or not. Part of me wanted to just rip the wig off and say this is me...take it or leave it! But I wasn’t at that point yet where I felt comfortable enough to do so. When I went for lunch with my sister the following day though, I decided spur of the moment that I didn't need to hide behind the wig. It was a big step for me and to be honest, felt really uncomfortable at first, but once I got out I found myself gaining more confidence. I was worried that people would stare but they didn’t really bat much of an eye at it. That is until I did the full monty and shaved my head completely bald a couple weeks later….

The little hairs left on my head had been falling out and my pillowcase and everything my head touched was covered in them. The lady who shaved my head had recommended that I go to a barber shop and get a straight razor cut once the time had come. I had never imagined getting a straight razor cut before and the barber had never shaved a woman's head before so it was an experience for both of us. It was pretty cool to get my head pampered in a way with the hot towels and everything. It's a little nerve wracking having a straight razor blade run across your head but he did a fantastic job and got rid of every last little hair. My head looked so white though once he was done as it had never seen the light of day all these years. When I went to pick up my prescriptions later at the pharmacy, I started noticing all the stares. It’s one thing to shave your head, but another to have absolutely nothing there anymore and even more so as a woman. My confidence wavered and it took some time to regain it back, but once I did, I owned it. Besides, I was still me. My hair was a part of my style, my personality, but I'm still the same person no matter what. Just stronger and more confident than I've ever been.

My hair doesn't define me. My strength does. 

Genetic Testing

Roughly two weeks after the referral was sent in by my oncologist, I had an hour long telephone appointment regarding genetic testing with one of the genetic counsellors at the Hereditary Cancer Program. She asked me if I understood what genetic testing entailed and the possible outcomes if I tested positive for one of the gene mutations. My oncologist had already explained to me that if I tested positive, recommendations for risk-reducing surgery would likely be put in place which may include a bilateral mastectomy (removal of both breasts) and oopherectomy (removal of the ovaries). It was a scary thought but at the same time was relieving knowing I had options out there to possibly prevent recurrence or development of other cancers.

The genetic counsellor then went into my family history of cancer. We spoke first about my dad’s side of the family which didn't cause much concern in terms of having a hereditary risk. My great uncle had passed away from brain cancer in his 80s and my aunt had passed away from lung cancer in her 40s. My mom’s side of the family was where the red flags went up though. There was a lot of cancer, including multiples of particular types, and a few of us had also been diagnosed at a fairly young age. My great grandmother had passed away from pancreatic cancer in her 70s, my grandmother had passed away from breast cancer which metastasized to her bones later on in her 70s, my uncle had battled leukemia in his 40s and later passed away from another primary cancer in his 50s, and my cousin was currently battling pancreatic cancer which had spread to her liver in her late 30s. I was diagnosed with breast cancer at age 34.

There are certain referral criteria that must be met in order to qualify for genetic testing. These include having multiples of hereditary cancers such as breast, ovarian and colon cancers in close relatives, or being diagnosed with a hereditary cancer at a young age. Being under 35 and diagnosed with breast cancer, I was eligible to get tested for the 14 gene mutation panel, including the BRCA1, BRCA2, and TP53 gene mutations. Women with a BRCA1 or BRCA2 gene mutation have a 60% chance of developing breast cancer in their lifetime and also have a heightened risk of developing ovarian cancer. Whereas, a TP53 mutation increases a person's risk of developing multiple cancers including leukemia, breast, ovarian, pancreatic, bone, and brain cancers. This mutation is a lot rarer to find in people than the BRCA1 + 2 but it was worth testing for given the extensive history of cancer in my family. 

In order to get tested, all I needed to do was provide a quick blood sample at the hospital which would then be expedited over to the Hereditary Cancer Program in Vancouver to determine whether I carried the gene mutation. The testing could take up to 8 weeks in total. If a mutation was found, then recommendations would be put in place for risk-reducing surgery and increased surveillance and my family would need to be tested as well as they would have a 50% chance of carrying the gene mutation. If no mutation was found, that was considered a good thing as I wouldn't be at as high of a risk of recurrence or developing particular cancers; however, I may still have a gene mutation that just hasn't been discovered yet and may not be for some years. I thought given my family history that there must be a gene mutation somewhere which would provide me with an answer in a way as to why it was so prevalent on my mom's side. As much as I was anxious to get the results though, I had to get it out of my head for awhile as I had other things to focus on, primarily getting through chemo. 

First Round of Chemo Cocktails

After meeting with the oncologists in Victoria, I went to the Nanaimo Cancer Clinic to meet with the GP Oncologist who I would be checking in with on a biweekly basis while going through chemo.  A nurse brought me in first to take my weight and blood pressure as a starting marker. The GPO then came in to talk to me about the treatment I would be going through. The first 4 cycles I would be treated with was a harsh combo of chemo drugs, Doxorubicin and Cyclophosphamide, which had side effects such as hair loss, nausea, fatigue, and mouth sores. The second half of my treatment I would be given a less harsh chemo drug called Paclitaxel with side effects including possible allergic reactions, bone and muscle pain, and neuropathy (tingling of the finger and toes). The GPO also checked my breast as it had recently swollen up due to a hematoma (a buildup of fluid which my body should reabsorb). She then checked the lymph nodes and was concerned as a couple felt enlarged. My arm had been bothering me over the last few days but I had just waived it off thinking it was just part of the healing process. I was set up with an ultrasound appointment before my chemo on Friday to see if there was any cause for concern.

The following day, I went in for my heart function test to determine whether my heart muscle was strong enough to handle the chemo drug I would be taking. A radioactive dye was injected into me to help highlight the heart cells and tissues and then it was time to sit and wait about 45 minutes to let the dye work through my system. Once I was brought in for the test, I had small pads put on my chest to detect my heart beat and then the machine was lowered to about an inch from my chest to get close enough for the images. The test took about an hour and they let me know that if I didn’t hear anything from the doctor, that my heart was good to go for chemo in a couple days.

Next up was bloodwork which I would need to get done the afternoon before treatment every 2 weeks to determine whether my blood counts were high enough to handle the next course of treatment. If the counts were too low, there was the possibility of treatment being delayed which was the last thing I wanted. I wanted to get this chemo done and over with as quickly as possible. Thankfully I am not afraid of needles, but I was starting to look like a bit of a pin cushion at this point and was over being poked so many times!

The night before my first chemo appointment, I could not sleep. I was excited in a way to get things moving and to kill whatever cancerous cells were left in my body, but I also felt nervous about how my body would react to the treatment. This wasn’t going to be an easy part of the journey. A couple hours prior to chemo, I went in for the ultrasound of my breast and lymph nodes that my GPO had ordered. The ultrasound tech seemed concerned about the fluid buildup in my breast but I let her know that I was told it was a hematoma and was normal to get after surgery. She spoke with the radiologist briefly and came back to let me know that my doctor would receive the results soon. All seemed well at that point so I left to head down to my first treatment in the cancer clinic.

One of the nurses brought my husband and I into one of the side rooms to give us a quick chemo teach session which included contact information in case I needed to get in touch with one of the nurses or oncologists, information on getting through chemo in terms of eating and staying active, and information on some of the side effects I may experience. There was a piece of paper I now needed to carry along with me at all times which had a list of the chemo drugs I was on in case I ended up in the emergency department at some point. Certain drugs could counteract with chemo so there were certain medications I may not be able to take, such as Ibuprofen. My body would also be at an increased risk of infection as my immune system would be compromised throughout treatment with my blood counts being so low.

I was then shown into the chemo room which had about 10 big recliner chairs in it for patients. I picked one of the chairs at the far side and got settled in. The nurse came over to give me my first dose of anti-nausea medication and then got me started on an IV of saline for a few minutes. Once I was a bit hydrated, I was ready for my first dose of my Doxorubicin aka the “Red Devil”. This stuff is the bad stuff. The nurses have to fully suit up while administering the chemo medication as it is highly toxic. It's bright red and is given by slowly injecting it into the IV port over a course of 20 minutes. While the drug was injected into my system, I had to suck on a popsicle and ice chips to help constrict the blood vessels in my mouth to help ward off getting mouth sores. The nurse advised me not to be alarmed when I went to the bathroom later on as the drug would turn my pee bright red for a few hours.

Once I was done with the Red Devil, I was started on a drip of the other chemo drug, Cyclophosphamide, which took about an hour and then I was free to go home. Other than feeling a bit foggy, I felt otherwise pretty good and thought, “Ha! I’ve got this!” That is until I got home. By the time we reached our house, I had to drag myself to the couch and lay down. I felt nauseous. I was tired. I couldn’t talk or move. I just felt all around awful. My husband tried to get me to eat but I couldn’t do anything. All I wanted to do was to sleep this bad stuff off and wake up feeling better.

The following day, I woke up feeling not a lot better but managed to get a small amount of food in me. I had to take a combination of three anti-nausea medications in the morning with food and then another pill at night to ward off the nausea for the first three days after treatment. I already hate taking pills, and the last thing I wanted to do when I was feeling sick was to try and take a bunch of pills. I would also be starting my Neupogen injections the following day for seven days in total to help get my white blood cell count back up. My husband would be learning how to do the injections so that he could give them to me at home since I would be getting them after every treatment cycle.

A couple of days after chemo, I got up early to for the MRI of my liver and abdomen. I was dreading being stuck in a machine for up to an hour as I had felt so awful the last two days. When we got to the hospital, I had an IV put in so that they could inject a dye into me for the MRI. The MRI took about 45 minutes and I had to lay there very still while they took images of my abdomen, all the while the machine buzzing and moving around me. Once finished, the technician told me the results could take a few days. I wanted so badly to know right then what the scan showed and if everything was okay.

Two days later, I had a bit of a set back. My lumpectomy site opened up and started oozing out. I dropped everything I was doing and went to the urgent care centre immediately. The doctor on-call looked at it and let me know that it was infected and he would be putting me on a course of antibiotics. I was so bummed. I thought the site was almost healed, but now instead I had a big whole where the lump had been taken out. I would need to get set up with Home and Community Care to clean, pack and dress the wound until it was healed. The site needed to heal from the inside out so that the skin didn’t grow over the top with an empty pocket inside as bacteria could continue to grow inside and become infected again.

My family doctor needed to set up a referral to home and community care so while I was there, I asked if anything had come back from the ultrasound a few days before. She left the room to check and when she returned I knew the news wasn’t good. The breast was clear; however, two lymph nodes were identified as being enlarged, suspicious, and possibly cancerous. Although I knew there was the possibility of more lymph nodes being affected, it still hit me hard and was disheartening and felt like another step back. I had hoped that everything cancerous was removed, but it just confirmed to me that I still had a fight ahead of me.

Feeling a bit defeated and having a bit of a pity party the next day, I got a call from the oncologist at the Cancer Agency with some good news, the MRI came back all clear. The hugest weight felt like it was lifted off my shoulders and I cried tears of joy. One scan was checked off, now one more to go! I just hoped for the same good news with the bone scan. A few days later, I showed up to the hospital to have another radioactive dye injected into me and then returned four hours later once it had circulated through my system. The bone scan itself took about an hour with images taken of each section of my body from head to toe. The hardest part was waiting for the results. Test anxiety rears its head and gets the best of you at these times. It’s all I could think about and I hoped that everything would be okay but kept reminding myself too that I didn’t have control of what came back, whether it was positive or negative. When I seen the GPO the following week, I asked for the results and she let me know that it all came back clear as well. The last bit of weight was lifted off my shoulders and I finally felt like I could tackle this thing head on.

One down, 7 more to go!