My chemo diary: Day 130

Tuesday, 3 March 2020 - On Friday I will be going for my last chemo session. After a double mastectomy in August last year, I underwent preventative chemotherapy since 25 October 2019, weekly, to help lower the risk of my breast cancer returning. 

In combination with chemotherapy, I also receive a drug called Herceptin, every three weeks for 18 months. This drug attempts to block the HER2 protein receptors that cause cancer cells to grow. According to sources, only 1 in 5 breast cancers has this gene variation that produces a surplus of the HER2 protein. 

And, because my cancer also tested positive for hormone receptors, from next month, I will start a 5 to 10-year treatment plan that suppresses my ovaries from producing estrogen. This involves an injection once every three months. In combination with the hormone-blocking therapy, I will also be taking a daily drug (Tamoxifen) that blocks estrogen from attaching to the receptor on the cancer cell. This prevents the cancer cells from getting the hormones they need to grow.

Looking back at the last eight months, I sometimes hope it was all a bad dream. But it is not.

26 June 2019: Annual routine health screening. Good news: according to my bloodwork, echocardiogram (ECG), and pap smear I am in better health than the average 45-year old woman.

8 July 2019: Annual routine mammogram. Bad news: suspicious mass measuring 15mm in my right breast. No lumps, no visible external signs of breast cancer.

11 July 2019: Fine needle aspiration. A test to determine the microanatomy of cells.

23 July 2019: Devastating news: I have breast cancer.

1 August 2019: Hospitalised for a surgical biopsy. Tests will be performed on the tumour to determine the type and stage of cancer.

21 August 2019: I meet my oncologist and decide to have a double mastectomy as the first phase of my treatment. He is vague about my diagnoses.

26 August 2019: After agreeing on the terms of a new contract, and after already meeting the clients and doing work for a PR agency, they cancel my 4-month contract due to my cancer diagnoses.

30 August 2019: Hospitalised for a double mastectomy and reconstructive surgery. The tumour is successfully removed. 

1 September 2019: X-rays of my chest and an ultrasound of my abdomen to determine if there are any other tumours in my organs. Good news: all clear! No cancer in any other part of my body.

10 September 2019: Good news: tests done on the breast tissue that was removed came back. The tumour was successfully removed. Of the nine lymph nodes that were removed, all were negative for cancer. This means the cancer has not spread, and I am in principle cancer-free.

27 September 2019: Hospitalised for debridement of my wounds. I have trouble healing, and some complications are developing. 

3 October 2019: My oncologist is an asshole, so I went for a second opinion. Finally, I have a proper diagnosis: I have Stage II Lobular Pleomorphic breast cancer that is hormone receptor-positive. 

16 October 2019: I shave my hair ahead of chemotherapy.

25 October 2019: I start my 18-week weekly chemotherapy regime. It is a preventative regime to make sure that we kill off circulating tumour cells (CTCs) that may be in my bloodstream.

13 November 2019: Hospitalised to remove the right implant. The trouble with healing resulted in infection.

18 November: My hair falls out in handfuls. Hubby shaves me bald.

29 November 2019: Bad news: my oncologist tells me that test results, that she received late, also shows my cancer is HER2 positive. This means additional treatment with an insanely expensive drug.

2 December: I meet my cardiologist. Chemotherapy can affect the heart muscles. Good news: my heart looks like that of a 24-year old!

20 December 2019: I start my 18-month Herceptin treatment regime to block the HER2 protein receptors.

8 February 2020: Once again, my hair falls out in handfuls. Hubby shaves me bald for a second time since I started chemo.

All of this, so far, costs R425,000. The medical aid paid R370,000 of it.  The crowdfunding campaign my husband started helped to pay the balance of R55,000. And we had to sell one of our cars to pay our bills (remember the PR agency that cancelled a 4-month contract?). From now until the end of July 2020, I have a 20% co-payment on all my treatments because I have reached my annual cancer PMB limit. 

Click here to donate: https://www.backabuddy.co.za/marisa-louw

The chemo side-effects are nothing compared to the financial strain my husband and I are under! But then, who is not under financial pressure these days... It is just that we are experiencing this on top of the financial stress that all households experience in today's economic environment. 

But, back to the side-effects. The most apparent side-effect was hair loss, which started around day 20 of my chemotherapy. Along with the actual chemo drug, my weekly drugs also included cortisone and steriods, that resulted in a weight gain of 10 kg in only four months. I started experiencing water retention, which caused my face, hands, legs, and feet to swell. At times the swelling was so bad that I found it uncomfortable to walk and type. I was given a drug to help with the symptoms. This drug lowered my already low blood pressure. Over time I became more and more tired, and it took more effort and energy to perform simple everyday tasks. It is a kind of fatigue that I cannot describe.

If you've ever had an intravenous drip, you will know that when the fluid enters your vein, it can be cold or it burns a bit. Well, the chemo drug pains! Once again, not a feeling that I can express. It also leaves your hand swollen and your arm painful for a few days after chemo. By week 10, my left hand and arm were permanently swollen, bruised, and throbbing. At times, I could not hold a coffee mug with my left hand. I've become accustomed to my Schedule 5 pain medication. So much so,  that I am a little worried that I may have become just slightly more dependent on it than I should have.

And then there is the cancer-related cognitive impairment or cognitive dysfunction, known as chemo brain. I will forget what I discussed with a client, or I'll be in a conversation with someone and totally lose my train of thought, struggling to remember even everyday words. My concentration is shot, and where I could in the past memorise a shopping list, I now have to write one, and then, when I get in the shop, can't remember what I did with my written list. Before chemo, I started working at 4 am and finished off my day around 5 pm. Now, I cannot concentrate for longer than an hour or two at a time. Anyone who knows me well will notice that I am now unusually disorganised. 

It is my understanding that most of these side-effects will dissipate within a few weeks after my chemotherapy ended. But, I may still experience some side-effects from the Herceptin over the next 15 months, and from the hormone-blocking therapy. I already started experiencing hot flushes. 

Chemotherapy can, at times, cause damage to the ovaries, and I think this may have been the case in my situation because my last menstruation was in December. At least we are entering colder months, and I am hoping that it will be easier to cope with hot flushes in winter. My oncologist warned me about excessive weight gain if I am not careful what I put in my mouth. She said that I should get daily exercise and follow a healthy eating plan. It is also essential to take special care of my vagina because vaginal dryness could cause certain complications. 

What I have learned over the past eight months make it unfathomable that there are people who believe that cancer can be cured with a low-alkaline diet or cannabis. Cancer is a genetic mutation of cells in your body. No matter how much bicarb of soda you drink every day, it is not going to prevent or cure cancer. Neither is drinking lemon juice or dripping cannabis oil on your tongue several times a day. My oncologist uses cannabis for cancer patients who are losing too much weight, or who cannot sleep, or who are in severe pain. I do not need cannabis because I have a healthy appetite, my sleeping patterns are messed up but I still sleep well most of the time, and the pain is manageable with standard scheduled pain killers. 

The emotional strain of my breast cancer diagnoses, the subsequent surgeries, chemotherapy, other drugs, and side-effects have made it challenging to keep a positive mindset. I stopped smoking in December, but my mental health took a steep dive into a deep black hole. Under my husband's guidance, I started smoking again last week. He helps me to control the number of cigarettes I smoke per day, keeping it under four per day. Before, I smoked between 10 and 15 a day. Since I started again, I am more positive and in a much better headspace. 

Although I will have my last chemo session on Friday, my cancer journey is far from over. If the treatment works, I will be classified as 'in remission' when I am 56 years old, 10 years from now. If I am still cancer-free when I turn 60, I will be considered a breast cancer survivor. So, get ready friends. My 60th birthday party is going to be a celebration like you've never seen!