Living with Cancer

Know your body! Don’t ignore the warning signs if your body is trying to tell you something. About a year prior to BC diagnosis, I started getting cold sores around my nose that would not go away.  I’m not allergic to anything but at the time, I was thinking maybe I was developing allergies. My brother became allergic to peanuts later in his life, so that was my rationale concluding that it was too insignificant to go see a doctor. In addition, I developed some red bumps in my armpit. Again, being a woman and using a raiser each morning, my explanation made sense at the time that it was caused from shaving.  Later it turned out that my lymph nodes were already swollen from invasion of cancer cells.

The anticipation of having to explain to my 8 and 6 year old kids about cancer when we try to protect them from any pain at this innocent age, takes a whole new dimension. I was fearing how to best share the news. Questions such as how they will react, will they be scared, how will they see me when I lose my hair and get scars on my body were flooding my mind.  Will they be scared to hug me, ashamed when I pick them up from school? And how much do they really need to know at that age? 

Surprisingly, the kids at that age are so self-centered.  Their main concerns were who is going to make their lunches and do their hair.  My kids actually thought I looked funny without my hair and had fun playing with my wigs pretending they were someone else.  They even joked that I looked more like my brother…

The kids are really resilient, so my worrying how to deliver them the news was excessive.  I learned my lesson to be direct, honest adn try to keep it simple giving them time to process, ask questions and see what they already have heard about cancer.  You may be pleasantly surprised and relieved how smart they are making light of the disease.

Knowing what’s to come ahead as part of my cancer treatment, I wasn’t sure how much my job will be impacted. I wasn’t sure how much ability I would have to work while undergoing treatments and who at work should know my circumstances besides my boss and the team that I was leading. I figured people will find out eventually when they see me looking differently but I didn’t want to explain. Going into my boss’s office, I took a big breath fighting my tears back thinking I will have to be brief.  I was just going to tell him what’s going on and ask him to keep it private. I think anyone who hears the terrible news from someone, does not always know what the right thing is to say but I was so appreciative when my manager told me “do what you need to do to take care of your health, don’t worry about work.” I just hope that everyone’s boss is uderstanding and flexible because in the grand scheme of things, the job no longer becomes important when you are fighting for your health back.

Working from home during my treatments was my mental escape because it let me focus on something else other than cancer and its symptoms. I kept my mind busy, continued to contribute and make decisions where applicable, talked to my team often to stay engaged and still feel part of the team. Even my team stepped up to ensure that I didn’t have to worry about deadlines or urgent matters. They felt more empowered to make decisions on their own and it helped me feel less guilty having to delegate and rely more on them. We actually became closer more than ever. We met for lunches when I felt better, which allowed me to catch up on office gossip and  anything else I was missing from being out of the office.  During and post surgery, I was not able to work at all for a couple of months due to limited arm motions.  I had to be on short term disability in order to heal but my team continued to check on me, send me flowers, encouring cards and texts. They became my support network.

I was prescribed 8 rounds of chemo every two weeks starting with AC first (Adriamycin & Cytocan) which is bright red color and sometimes referred as “red devil”. Just the sound of this name gave me chills and fear.  I was worried about the things I read (that it is the worst kind of chemo drug but the most effective in shrinking fast growing tumors and essential for my survival). My perception of chemo was not just about losing the hair but also sucking the life out of my body. The list of side effects is overwhleming. Of course, my mind was thinking of the worst possible scenarios, complications, not being able to get out of the bed and missing on life…Now after being through this, believe me, it is not like that. I got pretty sick from chemo injections and was experiencing different side effects after each treatment but the steroids, the anti-allergy and anti-nausea meds helped me stay out of the bathroom.  It’s not an easy drug; it impacts bone marrow (blood cells) and heart, and its side effects have to be treated with other meds to make therapy more manageable, so that you could lead somewhat normal life. Don’t automatically assume that your treatment or side effects will be the same. Know the possible side effects, how to cope and treat them, so that you can continue living your life.  My medical care team was amazing in helping me manage the side effects and were available 24/7 to answer any questions. 

Nobody knows how your body will react to the first treatment. For the first 30 min, I received various nausea control injections (Emend, Dexamethasone, Zofran) and also to control possible allergic reaction.  I was nervous about waiting, how my body will react, whether I will feel pain…The A/C chemo drug was injected very slowly and I was watched closely by nurses for any allergic reaction. Just in the first 10min of A/C admisson, I felt tingling in my head. It was non-painful tingling, a weird sensation which I can describe as ants crawling on top and back of my head. In a few hours, I also started experiencing indigestion, sligh stomach pain but forced myself to eat lightly (couscous with veggies). The next 24 hrs after chemo, I felt fine. I was actually able to work and felt good overall. But that was short lived…the next 5 days, I woke up neauseous, gagging, dizzy, blurry vision, heartbeat racing. The steroids helped with the side effects but fatigue set in immediately. Luckily, my treatments were scheduled every 2 weeks which allowed me room to breath, and 5-7 days after each chemo, I felt my normal self again.  Although, the side effects accumulated, nausea and fatigue became more intense, but the pattern of how long the side effects lasted became more predictable.  I felt much better the 2nd week after the treatment which allowed me to plan visits with friends, go out to dinner or go camping.

Losing my hair to chemo was just a matter of time. My hair started coming out in lumps after the 2nd round of chemo. As a woman having long hair, this was very hard to accept…I admired the bravery of other women on social media showing their bold heads, but I could not bring myself to that.  I also decided not to shave my head but instead cut it short and try a pixie hair style for a little bit (always wanted to try it but never took a risk) which actually made the waiting period of losing hair somewhat less despairing. My wonderful friends took me to a local wig salon. We made it a fun activity, trying various wigs and hats having a good time.  My generous friends bought me my first wig and a hat.  I also found a few hats online, on Etsy and bought a few different color and length wigs to make the hair loss experience a little fun. At the beginning, I was uneasy about my kids seeing me without hair or my husband still finding me attractive, but these insecurities were all in my head.  Chemo took my hair away but it didn’t take my style or elegance.  It gave me an opportunity to try organic beauty products, test different wig styles and hats, and even have fun doing it with my loved ones.  As much as I was freaking out about losing my hair, once it was gone, I made peace and embraced it. My husband even joked that he was with a different girlfriend when I changed my wigs, and my kids thought it was fun to play with the wigs as well. After all, I had to remind myself that this was temporary.

Nausea and fatigue were the most prevailing chemo side effects and probably most common for everyone. Although steroids helped nausea to subside, it never really seemed to go away and stayed in the back of my throat at all times. Eating pretzels, crackers, drinking lemon and ginger water, aromatherapy (candles and oils) seemed to help a little. I forced myself to work out every day to gain more energy (walks, lifting weights, vacuming the house, anything that increased my steps and movement). This was the only time besides being pregnant, when I took naps during the day. After a few chemo treatments, I developed mouth sores.  I don’t like the artificial flavoring of ice pops, so I sucked on ice cubes during chemo, but I still had a few mouth sores.  I ate soft and non-acidic foods to help the sores heal faster (oatmeal, bananas, soups). My taste buds changed and I had bone pain too which felt more like muscle ache similar to flu symptoms but the worst bone pain I had ever experienced was after my 5th chemo treatment when I had to switch from A/C to Taxol injections.  I was told by my doctor that A/C typically is the worst in terms of the side effects and that I should actually feel some relief when transitioning to Taxol. To the contrary, I had so much bone pain and abdominal pain that I could not sleep, sit or stand still, it was non stop pain for 32hrs.  I had an earache, sore throat, numbness in my feet, head pressure, I even got a delayed reaction and developed a rash all over my body and my feet itched so bad.  I took Tramadol, Advil, Benedryl and nothing helped.  When my fever started rising, I had to go to ER.  After a few tests, nothing was found.  It was thought to be viral. I continued to have low fever for about 4 days and eventually it went away but to my surprise Claritin helped with the bone pain. This experience just shows how differently we react to meds.  Taxol was supposed to be easier on my body than A/C. It is important to talk to your oncology doctor because they can make adjustments to your treatment plan, doses and strengths, prescribe different medications to help deal with the side effects.  One lesson I learned early on that I didnt want to get my chemo treatments on Thursdays or Fridays because my worst days were always over the weekend. I need that re-assurance that I could call my doctor when something was wrong rather than going to ER over the weekend.