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Chapter 7: I had some dark days…
Imagine moving from a place of ‘normal’ to being told you have breast cancer and having to process that.
Now, imagine being told that the lump can be removed, but not before an MRI is done to get a better image.
Next, imagine being told that the lump is not the only one that exists and that the second lump is much larger.
Now, imagine being told that the removal process cannot be limited to just the lump, but rather the entire breast, as there would not be enough tissue left if both lumps are removed. A lot, no?
This was my reality between May 16, 2024, and June 11, 2024. During that time, my husband and I decided that a double mastectomy would be the best option. This was due to the aggressive nature of the cancer and my family history of cancer.
That decision was supported by my doctor and was aimed at greater peace of mind in years to come. The potential for recurrence on the remaining breast would be a worry that I would not be able to shake, and that would negatively impact my quality of life.
Having had my surgery on June 11, 2024, the recovery period immediately afterwards was rough, not just for me but for my husband. He supported and assisted in every way possible, but admitted that it was hard seeing me in pain.
My doctor indicated that the surgery was successful and no ‘surprises’ were found. He further advised that it would take about three to four weeks to get back the results from the tissue that was sent to be tested.
That was a long time to wait to know if the cancer had spread to my lymph nodes. If it had, then the course of treatment would be different.
After four weeks, the results confirmed the aggressive nature of the cancer, but also that there was no spread to the lymph nodes—a bit of good news amidst the negatives.
I was referred to an oncologist, who I would later learn was the best in the country and the Caribbean. Another bit of good news.
At our first visit with the oncologist, after a review of all my test results and history, the treatment plan was outlined to us: five months of chemotherapy. Five months.
I was prepared for some degree of chemotherapy, but I had partially convinced myself that the lack of spread to the lymph nodes would make it easier, like oral medication to be taken as opposed to IV.
The treatment plan included two drugs—AC and Taxol. The first was often referred to as the ‘red devil’, not just because it was red in colour, but also because the side effects were extremely unpleasant—everything from fatigue and nausea to hair loss, pain and skin changes. This drug would be administered every two weeks for two months.
My first session was on 2 August 2024. I was anxious, not knowing what to expect and also nervous based on what I had read about the drug and the side effects.
I had packed water, a protein drink, socks, a washcloth, a towel and hair conditioner into a duffel bag. I also packed panty shields as the nurse had said they would need those for my forehead for the cold cap they would use during treatment.
What I did not have was a cooler to take home the injections. I was sure to bring that for the next three sessions. The injections would have to be administered at home for six days after each treatment session, something else I was not prepared for.
I dressed comfortably in leggings, a vest and an oversized hoodie—something easy. I quickly decided that these sessions did not warrant a new outfit each time. I had landed on my set chemo outfit for each session, and I was fine with that. It was not a party. That outfit also made it easy to manoeuvre with an IV in my hand.
Watching the red liquid flow from the IV bag through the tube and into my veins was admittedly something I should not have done, as it made the anxiety worse.
After three hours, the first session was over, and I felt somewhat relieved that I could start the countdown to when it would ALL be over. Three days later, the side effects—nausea, fatigue and dizziness—kicked in. It was rough; I almost fainted in the kitchen one afternoon, and thankfully, my husband was there to catch me…literally.
At the post-treatment check-up, which was one week after the session, they found that my white blood cell count was far lower than was acceptable.
I was given more medication and told to redo the blood tests the next day, a Saturday, to ensure that it was working. I was also told to immediately send the results upon receipt so that I could be further guided.
They also told me to stay away from crowds, as I was very susceptible to infection based on my low levels. I followed those instructions, but not knowing what specific reading I should be looking at with repeated blood tests, I sent them off to both the doctor and the head nurse.
Just before noon, the head nurse called to say that my readings were even lower than the day before and that I should take another dose of the meds and continue to avoid crowds.
I should mention here that the meds I am referring to are the injections I was given to take home. I was given more than six because of my levels. Those injections are administered to the stomach area, but I could not do that myself. My husband helped, thankfully.
Just after 2 pm, the doctor himself called and advised that I proceed, as soon as possible, to a hospital to be admitted. He explained that it would allow me to be in a sterile environment, while being medicated and monitored and that, hopefully, they would be successful in increasing my levels within 24 hours.
Not the hotel stay I was hoping for, but a stay, nonetheless. We arranged with my mother-in-law to keep my daughter overnight as my husband would want to stay in the hospital with me, if possible.
We got there at 5 pm that Saturday, and I was given a private room, which had a cot. That cot turned out to be very uncomfortable, so it was not feasible for my husband to stay overnight.
That evening, into the night, and the next morning, I was given a cocktail of drugs to not ward off infections and increase my WBC count levels. Some meds were given orally, but others were given via IV. Before May 16, 2024, my fear of needles was REAL. Fast forward some months, and I am a bit better. Still hate needles and still can’t look at them, but I’m better with the anxiety of the process.
My levels improved the next day, and I was given the green light to go home around 4 pm. Welcomed news as the hospital bed was uncomfortable, so I had not had a good night’s sleep. This was in addition to not being able to bend my right arm because of the location of the IV access. That 24-hour stay cost $23,000.
At the second session, August 16, 2024, I was advised that they would be reducing my dosage to 75% to prevent a recurrence of what happened after the first session. I was optimistic about that, as hopefully, the side effects would also be reduced, which they did, but not to nil.
It was four days after this session that my hair started falling. Arguably one of, if not THE most challenging developments up to that point. The reduced dosage was maintained for the remaining sessions; however, the final session, which was originally set for September 13, 2024, had to be delayed.
My WBC count levels were too low. This was a tough pill to swallow as I was excited to be done with this drug before my birthday, September 16. In hindsight, I had prayed not to be sick on the day of my birthday and this way, having had no treatment, I would not be.
While that prayer was answered, the emotions that came with having a birthday in the middle of chemotherapy treatment were a lot. I could not celebrate in the ways I would normally celebrate, and that was another tough pill to swallow. I leaned on my support system during that time. My husband got me roses as he knew I was not in the mood to celebrate in a more meaningful way.
The last session was finally completed on September 18, 2024, one day before we were due to head to Tobago for my sister-in-law’s birthday celebration. She was turning 50, and that was a milestone that needed to be celebrated.
Everyone was understanding that I would not be able to participate as I normally would, but I was happy to still be able to go and enjoy the change in scenery for a couple of days.
During this time, I resorted to watching reruns of my favourite sitcoms. This helped take my mind away from the constant feeling of sickness, tiredness and despair, almost.
I read somewhere that people who enjoy watching reruns do it as a response to anxiety. This made perfect sense in my situation.
I faced a great deal of uncertainty and negativity over which I had little to no control, and watching reruns provided the sense of ‘the expected’ that I badly needed.
I knew what was coming in each episode, I knew what to expect, and that gave me a sense of control that my diagnosis had robbed me of.
It helped.
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