Genie D. on April 29, 2015
I was Diagnosed with:
Acute promyelocytic leukemia and Oesteosarcoma
Type and Description of Treatments:
My twin and I were diagnosed with Acute promyelocytic leukemia when we were 16 years old. At first the medical staff didn't know what we had exactly and took many tests and finally gave both of us the bad news. We started out with pills and ended up with chemotherapy. It was very debilitating after each treatment. Worst of all is that we are AB+ and found out that our blood group was rare. Getting healthy marrow donors was going to be hard. We were always sick and thin -how we survived the following years is beyond me. My twin felt getting a career was a pointless exercise and he just decided to enjoy his life and not worry about being ill. He died a week after he got married because we did not have marrow donors even though we had been on the donor list for years. I was not going to allow my Leukemia to rule my life and chose to become an Archaeologist. This way I did not have to put up with employers and others feeling sorry for me. I just needed to make sure that when I was out in the field I was near a hospital just in case. I got married and became pregnant with triplets. My Oncologist told me that I should abort them because the possibility they would not survive was high and it was also making me bleed more. I refused, and he then suggested that my last trimester I be off my feet and that after they were born to have a hysterectomy because another pregnancy could kill me. I agreed and in 1985 I had 3 boys. Unfortunately 2 died within a week of cancer complications and I had a hysterectomy a week later. My son unfortunately was diagnosed with leukemia when he was 10. I then learned that my cancer is hereditary through my mother's side of the family. Most of my uncles and aunts and my grandmother are gone. In 2009 I developed Oesteosarcoma and had to quit being in the field because my knees were not working so well. In the end I lost both and had to have artificial knees put in. Plus my leukemia was becoming a problem. In June 2011 I went in for a dose of chemo and the nurse overdosed me, which resulted with me being in a coma on life support for 10 months. My dad was called in to get the last rights but he refused. I woke up in March of 2012. I had no knowledge of anything. The chemo overdose gave me short term memory loss. I had to have physiotherapy every day to learn to walk again. I had to learn how to dress myself and how to eat with utensils and basically learn from scratch who I was. And who my family were. That took me a long time. Amnesia is not fun and even today years later people will approach me and they know me but for the life of me I have no idea who they are or were in my life. Having the two cancers side by side is not fun. The oesteosarcoma has progressed whereby my bones are brittle and I have to take care more. So far I have lost most of the teeth in my mouth because my bones are receding. I can't afford any dental procedures to give me any fake teeth and wearing a plastic plate has become hard on my gums. When I am at home I just don't wear it. In 2014 after waiting for over 20 years for a marrow donor, I got good news - a perfect match was found for me. I had to fly to the U.S and it took many fundraisers to help make the trip possible. I had been previously informed that if I did not get a donor soon, I was going to die within a few months. So I was placed on top of an International donor list. On 23rd November 2014 I received the donor marrow. I have to wait to see if its taken but so far I feel like the energizer bunny on steroids. It is truly wonderful to have so much energy -more then I have ever had in decades. It's given me a new lease on life. I am unable to thank everyone for this life gift. I cannot go back out into the field anymore -which is sad, but I can teach my favorite subject.
How do you feel today?
I feel okay. But my get-up-and go, got up and went and I am just waiting for it to return. Busy getting over an unexpected migraine I got yesterday. Don't have them very often.
Since the diagnosis, what has changed in your life?
I've learned that life has many pitfalls but to never give up, no matter what is thrown in your pathway. When I was diagnosed with cancer, many of my so-called friends dropped me because they thought cancer was contagious. It was hard to accept the changes about to take place. My brother and I became closer. School was a pain because many times we could not go -we were too sick and we missed many dances etc. Neither of us could play sports. We were frail most of the time. I cried a lot. I wondered why God was punishing us this way. We talked about suicide quite a bit.
What is going well for you right now?
Waking up each morning and knowing I will not be hurting or sick.
What is not going well for you right now?
Having to go for blood tests every 2 weeks to find out if the marrow is taking hold and doing its job. I hate needles.
What has been the most challenging thing about having cancer?
Getting treatment when you need it. There are very few qualified doctors in Africa and even less in Oncology. Treatments are expensive and my parents are not rich. They mortgaged their home to fly me to America last year so that I could get my new marrow. Rotary International also helped with funds -so that I could stay in the US until end of May.
When difficulties overwhelm you, where do you go for support?
I don't have a support group. When things are not looking so rosy, I go sit in church and talk to God.
How have your long-term goals or life goals changed since diagnosis?
My long term goals were that I would greet each day as if it were going to be my last. I would enjoy each day that came along, Walking in nature is good. Working in an interesting field where you are your own boss is better. I knew when I graduated college that very few businesses would ever hire me as I was too much of a risk. Medical Aid would be costly. I have basically made it on my own. I get grants sometimes to continue in the field of Archaeology and have lived and worked in 25 countries over the many decades. Every discovery my team and I make is to the betterment of mankind and I take that very seriously. I haven't been back in the field for 3 years and I miss it. I am hoping I will be able to pick it up again when I go home soon.
What is your work arrangement right now? What are your hours?
I am not working much at all. I lecture at the local college for a few hours on Thursdays and Fridays. It brings very little money in.
Since the diagnosis, what has changed in your work life?
I would love to get a full time job right now instead of a few hours a week. I hate being idle or bored.
What has helped you continue to work the most?
Knowing that each day is precious and to never squander even an hour. Several people have asked me why I am in such a rush to do things. I have just got my life back so stop and smell the roses. None of them understand that before I got my marrow, thats all I was able to do. Everything was in slow motion and that I never knew if the day was going to be my last. I have lived with Leukemia for over 30 years. Some days were so bad I wanted to die and was actually making plans to end it....the pain being unbearable. Even working on ancient monuments sometimes the pain would hit me at the most inconvenient times. I would literally have to stop working for a few days. On 2 occasions I was airlifted out of the field and taken to the nearest hospital for treatment. But because I believe in what I am doing I always return. I just have to believe that no matter the cost to me there is so much ancient artifacts out there that the world needs to see and treasure and that has helped me to continue to work.
What advice do you have for others trying to work through treatment?
Never give up. If you get advice from 1 Oncologist-go see a few more before deciding what's best for you. And find a good support group that know what you are going through.
How have you dealt with any side effects of treatment?
Losing my hair, nails and teeth were not fun. Being sick for 2 days after each treatment either. I find that my memory isn't what it used to be and losing my appetite worse. My Oncologists keep telling me to stay away from sugars and milk-its hard. I love both. Most times I am good about it, but on occasion indulge. Feeling tired for hours and days is debilitating and not being able to sleep a whole night through. I had to have crutches on occasion because I couldn't support my tired legs anymore. Going to the toilet constantly is another headache. Losing bladder control at the most inconvenient times or places is embarrassing. Being thirsty all the time is annoying and still is. Some days even now I get mega thirsty-people keep saying I must have diabetes-I don't -already been tested. The double cancer has unfortunately made me deaf in one ear and blind in my one eye. There isn't anything I can do for either-I just have to live with it.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Don't be afraid to cry and get angry. You have a right to be both. This isn't your fault. It is a genetic inheritance. Learn to accept who you are and that if your friends do not understand, then you do not need their friendship. True friends stand beside you through thick or thin. Use your intelligence -of which you have plenty-to stop dwelling on what is and to fight for your right to live. Push the boundaries you have been put in and seek out the best medical care available. Take a lot of little naps during the day. It helps. There is no word called "can't" - energy comes in spurts, when it does, use it up with walks, cooking, reading or watching a good movie.