Read time 3 minutes
Q-1) Could you briefly describe your story?
A-1) Unknowingly had CANCEROUS TUMOR growth in lymph nodes in the groin and left upper thigh. Five in total. Once a lump had been noticed I had gone into surgery for the removal of two lymph nodes for biopsy which came back as cancerous. The cancer cells were unusual and went to further testing at a higher (one of the top) cancer treatment facility. Cleveland Clinic found cancer to be a rare form of lymphoma. Anaplastic Large T Cell ALK Positive Stage 2. After diagnosis, I had a port surgically inserted for the ease of iv chemotherapy which started shortly after. Six treatments, 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, in terms of 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 recover from chemo, I find myself often in bed, sleeping. Some days I am hungry and eat a regular diet other I can barely look at food and have some fruit or anything my stomach can handle. I can get sick very easily as my immune system is what has cancer and the chemo treatment is 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; depending on government initiatives or reading about your disease.
A-3) I read up on lymphomas through the internet and bought myself some college-grade books on the subject. I learned most from others who had been going through chemo treatments and who either had YouTube videos or on Facebook support groups.
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. I am under government health care because I am unemployed because of my cancer so 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 fully 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 which is covering my treatment in full. However, I still have to maintain a home and car I am dwindling down any savings and starting to become more reliant 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) honestly, I am smoking or eating marijuana while I’m undergoing chemo and I have changed my perspective on chemo as a more holistic and very healing experience and just trying to be grateful in 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 extremely supportive. Though the news was shocking to have cancer so young, my family has reassured me that they are available to help and 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 vulnerable not just to my family but to strangers letting people know I have cancer and I may feel 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
DISCLAIMER
The views expressed above in this article are the author’s own and do not represent any kind of medical advice.
