Hopeful for 2021
Happy New Year!!!
Yaiy!!!!! I am baaaack!!! OK, let me hug you virtually and give you a virtual peck on the cheek. Where on earth have I been?!! Hmm, don’t mind me. But I promise to tell you what happened, so you do not think I left you hanging.
You see, there are some things that these oncologists do not tell us when we are going through the initial stages of treatment. They are overworked and more and more cancer cases are on the rise. Sometimes, they want to zip zap zip and be done. Not all of them are experts on Survivorship and Quality of Life for Cancer patients.
Life after cancer chemo, radiation and surgery is vastly different from when you are in the trenches receiving treatment. During the initial stages of chemo and surgery, anyone and everyone who knows your condition is ready to leave what they are doing to help you; prepped meals, house cleaning, transportation to your appointments, prayers, encouragement, etc. As the patient you are overwhelmed and just grateful to have company.
Once they get the impression that you are “okay” (whatever that means in their vocabulary), you are left to navigate life after treatment on your own. Your support network suddenly vanishes like rapture just happened. That can cause a depressive spin. I remember during my radiation therapy treatments; my mum will follow me every day. It was comforting. 5 days to my radiation ending, she had to leave to go be with my dad. I cried for days after she left. I did not tell her but it was not the same not having her. The same thing happened when Dara had to leave me after my chemo treatment. She was family, my kids were like her kids and she had to go. It was tough.
It is going to be 4 years in February that I was diagnosed. I still have people asking me how I am doing health wise. This blog piece is going to answer that question. Survivorship for me has been more of trying to get my mental health in the right space. I was diagnosed with a hormone receptive kind of breast cancer. That means estrogen and progesterone were present in the tumors. To prevent any recurrence, I will have to be on aromatase inhibitors for the next 10 years. In layman’s terms, any sight of estrogen in my body will be nuked and suppressed. I will have to undergo early and chemical menopause. Think of a lady in her 30s with the body of an 80-year-old (including down below). At first it was the combination of Lupron and Tamoxifen. It was rough! The hot flashes were unbearable. Till date, I cannot grow my hair, or wear long braids or even wear thick clothing in winter because, my body becomes a blast furnace. I get edgy, I am angry, I am sweaty, I am miserable. Another side effect is depression.
Estrogen is crucial for women. That hormone, is a wonder hormone in the right portions, doing the right things (like not feeding cancer cells). It helps with hair and nail growth, skin freshness, mood balance, libido, reproductive health, weight balance, among others. God is a master builder! Our endocrine system is created so that these hormones are perfectly balanced, and our minds are not out of whack. Once you begin to mess with any of them, it comes with side effects. Those side effects were in high gear from Oct of 2017 to Dec 2017. By December, I was seeing a psychiatrist and he recommended Effexor to not only help with the hot flashes but also the depression. It helped!! I took a baby dose everyday and I was able to be me; active, running my business, handling my family, those things I love to do. However, I began to have allergic reactions and delayed auto-immune responses to all the cancer treatment (no one told me this). I had to see a dermatologist and use strong steroids to help with the skin reactions. They were bad.
I did not like the skin issues. I took laws into my hands, in conjunction with my psychiatrist and oncology nurse practitioner to take a break from the Effexor and the Lupron. I still stayed on the Tamoxifen. I stopped Lupron October of 2019. I weaned off the Effexor in July 2019.
Let us fast forward to 2020; the year many of us do not want to talk about. Phew! Like most people, life happened to me too. My major source of Cadillac insurance (aka hubby) no longer worked at the company. You can read about my blog on insurance and the financial burden of cancer here. Finding a new insurance that was not too expensive, including the providers that will continue to work with me was an arduous task. I finally found one. I did not find all. I was only able to get a Medical Oncologist. Meanwhile, under the Cadillac insurance, I saw a Rad Oncologist, a Plastic Surgeon, a Med Oncologist, and a slew of specialty care. I “sha” counted my blessings and thanked God I can do my yearly mammogram and see this new oncologist.
I was able to have my files transferred from the Dana to BILH. My first visit with this oncologist felt like doomsday reading. As far as he was concerned, I was not being aggressive enough with the hormone therapy treatment. He wanted me back on the Lupron at twice the dose, he wanted to switch me from Tamoxifen to Letrizole asap. However, I could not take Letrizole alone, it had to be with Lupron. He was also concerned that I was increasing my chances of having endometrial cancer by 0.2% every year I was on Tamoxifen. To cap it, I should not nurse the idea of having another baby because if the cancer comes back, he would not be able to cure me.
“I am trying to make you a grandmother Toyin, let us not mess with that”……
I cried. I was angry. Cancer stole my breast. Cancer is turning me into an old lady. Cancer is forcing me to take medications I have been running away from. Cancer is trying to dictate my quality of life. Oh cancer…In that moment, the glass was half empty. I went home. I was not the same. I shut down. That is the reason why you have not seen or heard from me.
I began Lupron injection again in August, 2020. I started Letrozole in October. I woke up everyday and I had no zest for life. My body was not the same. I had to push myself everyday to do basic things. I had no pleasure to do anything. I was depressed. The isolation from the pandemic did not make it easy either. The political agitation prior to the general election was palpable. The energy was toxic. I had nothing in me to wade that energy. At that point, I knew I needed help before things got bad.
I started therapy in November. Thanks to my therapist, I came to a level of acceptance about the two medications. See, I hate medications. I am not the type that chumps Tylenol at the sight of a slight headache. I will rather hydrate, sleep or schedule an emergency body massage than take Tylenol. I guard my liver jealously. With the help of the therapist, she helped me to see the chronicity of my condition and the need to put medical, physical, mental, and spiritual structures in place so I could live my life. It was a tough call, but it was well worth it. With weekly therapy, a daily dose of Zoloft, a daily dose of calcium, a daily dose of Vitamin D, prayer, exercise, and mindfulness, I am in a much better place. I trust God to continue to improve every day. I have also put structures in place so that people do not think I am a super woman. I am NOT! I also need help and I am not ashamed to ask for or receive it.
I am looking forward to 2021 with renewed hope. 2021 looks like it took some drama from 2020 but I still choose to be hopeful. I am also going to be dabbing into more fictional story telling based on some life experiences. Watch this space. Please subscribe if you have not and pray for me too.
Thank you so much for stopping by. Love you much!