Read time 4 minutes
Q-1) Could you describe your story?
A-1) I was unaware that I had a Cancerous Tumor.
Let me tell you that a tumor is a solid mass of tissue. It forms when abnormal cells group together. A tumor is capable of affecting bones, tissue, glands, skin, and organs. Many tumors are not cancer (but mine was). Cancerous tumors can be life-threatening and need cancer treatment.
The cancer was growing in lymph nodes in the groin and left upper thigh. Five in total. Once the lump was noticed I went for surgery. Two lymph nodes were removed by the procedure of a biopsy.
Unfortunately, they came back as cancer.
The cancer cells looked unusual. So, I decided to go for further testing at a higher cancer facility. It was one of the top-end facilities known to treat cancer.
Cleveland Clinic found cancer to be a rare form of lymphoma. Anaplastic Large T Cell ALK Positive Stage 2. After diagnosis, I went through surgical removal. Inserted for the ease of IV chemotherapy which started shortly after. Till now I have gone under six treatments.
It is one every three weeks, with BV-CHP the chemo regimen is proven to be very effective for my cancer.
Q-2) How has the disease changed your life? Your diet, work, and other activities?
A-2) Since finding the lump this disease has halted and at times completely stopped my life. From recovery from surgeries to recovery from chemo, I find myself often in bed, sleeping.
Some days I am hungry and eat a regular diet. Otherwise, I can barely look at food and have some fruit or anything my stomach can handle. I get sick quite often. My immune system is compromised. Cancer and the chemo treatments have halting new cells – white blood cells to grow.
So, my interactions with others are limited almost like I am undergoing quarantine.
Q-3) How do you keep yourself updated about your disease? Please specify if you are a member of an advocacy group. Also, do you depend on government initiatives or reading about your disease?
A-3) I read up on Lymphomas.
Today there is plenty of information available on the internet. I have also bought myself some college-grade books on the subject.
I must credit some Facebook support communities who helped me to gain information. Websites like yours and some others are doing genuine work of spreading awareness.
I thank such informative work that is published to help patients and their families.
Q-4) Are your treatment options easy to access? Are they expensive? Is there a permanent cure for your disease?
A-4) Treatment has been easy for me to access.
I am under government health care so there are no out-of-pocket costs for me. It is because I am unemployed. Also, because of my cancer, it seems to have worked out for me to receive “free” treatment and have easy and fast access. There is a High “cure” rate of 90% though I’m uncertain if it is ever cured.
Q-5) How did the treatment affect your family’s financial situation? Did you have to take loans or borrow money from friends and family?
A-5) Since I am unemployed, I have government-assisted health care. It covered my treatment in full.
Yet, I still have to maintain a home and car. I am dwindling any savings and starting to become more reliant. I am dependent on family and friends for help with any repairs that need to be done while I’m recovering.
Q-6) Are you trying out any alternate healing techniques?
A-6) To be honest there are times that I spoke while undergoing chemo.
I have changed my perspective on chemo. To me, it is more of a holistic and very healing experience. I try to be grateful for everything and try to maintain a stress-free environment.
Q-7) How did you and your family deal with your changed circumstances?
A-7) My family has been supportive.
The news was shocking for everyone when I got diagnosed with Cancer. Yet, my family assured me that they were always available to help me. I use their help often as I am a single mom of a three-year-old girl. I need help and they are there for me.
Q-8) Please share one aspect of your journey that touched you most.
A-8) I have found myself being very vulnerable even to my family. Somehow, I don’t like the idea of disclosing that I have Cancer.
I might sound silly or weak or humbled by something. Everyone around me voices their amazement and hope for me and I am constantly humbled by the love.
Q-9) Do you have a secret to staying strong? What inspires you to keep fighting?
A-9) The secret to staying strong is not always staying strong. Have your bad days, let others help, and grow stronger with your environment by allowing the help. I continue because I know it is going to be ok regardless of the outcome.
Q-10) What would be your message or advice to patients diagnosed with rare diseases?
A-10) It’s beyond your control so stop trying to control it. Relax.
- We have to face it out. You’re not facing cancer alone.
- Let’s pray for each other. It might only help us as a community.
- If I can be strong. Anyone can.
- Let’s not lose hope.
- Navigating a cancer diagnosis is individualistic. I experienced that Science has progressed a lot.
- Be compassionate to others.
- Let’s encourage knowledge banks that help us find solutions to our problems. They also join us as a community.
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.
