A Letter to my Cancer…

“Prof Fong gave me a sense of confidence that made such a difference” – Lisa Aris, Endometrial cancer patient stage 3B

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A Letter to my Cancer…

It may seem like you have control in my life right now, but you really don’t.

Your presence only makes me stronger, braver, kinder, wiser.

I choose how I think, what I speak and how I love.

You will never be able to touch those things. Never!

The fear of your name no longer haunts my soul because I know that my soul belongs to me and Allah SWT.

You may take your claim on this frail outer shell but never on my divine spirit that cries out “I am not my body”.

My soul will run, leap and tower over your attempts to pull me down into despair.

Those who surround me will fight with me to let it be known that we will not surrender.

Our hearts and souls are tight together in a lasting bond that no amount of your impeding growth can break.

You see cancer, you do not own me.

I own myself. And I will survive!

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A cancer diagnosis is the beginning of a personal journey for everyone. Everyone has a unique set of beliefs, values and ways of coping. You will find the way that work best for you.

This is a time when they want to meet others and form close relationships. A cancer diagnosis can interfere with these important parts of life.

Although I had not experienced dramatic symptoms prior to being diagnosed with stage 3-B endometrial cancer, I started to experience some spotting in 2011. I did not think much of it until it became more frequent spotting and pain got more unbearable than ever.

Despite my “normal” Pap smear results in January 2014, I made a few trips to the emergency department due to abnormal bleeding, spotting and excruciatingly pain. I have been having bleeding in between my periods, so it was a little worrisome. I began my own research based on my own medical experiences and read almost all the articles and books that I can get my hands on. I had a feeling that something was not right. I went back to see my doctor in August 2016, who sent me for a vaginal ultrasound and ordered further testing.

In Sep 2016, I discovered the awful truth. I came close to dying of endometrial cancer and it is almost a miracle to be alive today. Everyday life was hectic and stressful for me. As a working mother, I was out of energy all the time. Sometimes, I wanted to close my eyes most of the time with extreme tiredness.

I could feel the outline of something in my abdomen. I was not hurting so much in the beginning stage, so I just kept going. I was always tired.

I was in a mess. But when they got the results back, it was like a sucker punch. All I could think and say was, “How could this happen to me?” When the doctor told me what type of cancer. A biopsy of the lining of my uterus came back positive for endometrial cancer. I did not waste a minute, we immediately decided for a hysterectomy surgery the following week. I went through the appointment and listen to the results without being afraid. “Cancer is such a frightening word but do not be afraid, have faith. I cannot cure you but your God will, together with your fighting spirits”, Prof Fong managed to strike a tone that was both serious and optimistic. He spent so much time with us and answered our long list of questions patiently and thoroughly. Prof Fong gave me a sense of confidence that made such a difference. The cancer that I am having is rare and aggressive.

Prof Fong discussed with the hospital tumour board, we sat and talked about the plan of action. Recommended that I have a complete hysterectomy, which he performed the very following week after my diagnosis. I stayed in the hospital for 3 days. I cannot say enough about how thankful we were. The surgery went well, so we thought everything is going to be alright and what is important “Hey, I am FREE from pain!” Basically, everything was cleaned out. There is an upbeat spirit throughout – which is vitally important for a cancer patient.

When asked about my chances of beating cancer, I would say that odds were against me. I was told that I had 10 months to live. But that was unacceptable! This disease typically goes undiagnosed until it is at an advanced stage and has already spread.

My surgeon performed an extensive debunking surgery – full hysterectomy as well as removal of the omentum and a portion of the bowel, and stripping of the diaphragm. The debunking procedure has proven to increase the survival rates for endometrial cancer patients. We found evidence of tumours in nearby lymph nodes and in the tissue, that lines the bladder and the abdominal wall. He worked on in the same surgical area, my oncologist examined biopsied tissue through a high-resolution microscope. His immediate analysis confirmed the tissue was malignant (cancerous). This surgery has two primary goals: to stage the cancer and to remove as much disease as possible.

It was a rapid-growing cell. Which ordinarily would metastasize, but for whatever reason, my body had contained it. It was such a large tumour, so they decided I better have chemotherapy too. I had chemotherapy for the next half-year or so and then a little teeny bit of radiation at the end.

The downside has been my body hormonally went through this phenomenal transition. Of course, they took my ovaries out, and they took all the lymph nodes out of my stomach. Prof Fong is a very aggressive oncologist, he is worried about it having spread, and he wanted to look at everything. That was a radical physical change for my body to adjust to, so that was part of it.

After I recovered from surgery, my oncologist told me that, although the cancer had spread, his team removed the entire ovarian mass and all visible evidence of tumour. Chemotherapy was the next step in comprehensive care for the disease.

How did I no longer be angry anymore? You are always wondering why, so you are always looking for reasons why. Why you gave yourself this disease, or why the environmental factors plus the substance of what your body is. You cannot help but think there are some other factors that might be contributing. So, what can I do to change those factors? The ones that I have jurisdiction over. I will not use the word control. I started to think I was not being tuned in enough, sympathetic enough with my body. Maybe I was being demanding with it. So, I have more of a conversation with it now. For me, the physical exercise is more of a conversation with my body. I go out, and it feels good to move. When you risk losing your physical form, it makes you appreciate the physical form later.

I did well while undergoing treatment. I rested, ate healthy and took care of myself. Well, yeah only occasionally I will “cheat” but not all the time. I decided not to work full time during chemotherapy, but returned to my job during the maintenance phase of my treatment.

I recuperated nicely, and I returned to work 3 months after. After discussing my follow up treatment options with Prof Fong, which ranged from watchful waiting (or active surveillance) to chemotherapy and vaginal radiation, he opted for a serious of 8 radiation treatments, that turned out to be painless. Taking into consideration of my health, he felt that it would be best to monitor me closely every month.

Every week, I visited the chemotherapy unit, and got to know the nurses and other patients also undergoing treatment. I feel like they are part of a family. Everyone is funny and welcoming. They miss you and want to know what is new.

Recovery is interesting. I am finding out what’s Lisa’s new normal is. But the surgery threw me right into full menopause. I do not have the same energy level I had before, and I hate that. I feel like I must work extra hard but my thoughts must be on being on healthy.

Of course, the chemotherapy was difficult, because all the usual stuff. I lost my hair and I got progressively sicker. I was determined to get all the way through it. My body tolerated the chemotherapy relatively well. I could finish it out. The upside of all that is after the treatment and coming out of it, I have such a thankfulness that my body is capable of tolerating this storm of interference that happens with it. It became much more precious.

My children, my husband and my family, who were my biggest support, have fallen back into just being kids, as if that moment never happened. I am trying to do that myself, but I get emotional now. I think the realization that I was diagnosed with this hits me differently every day. I have refused to talk about this cancer as something I have. I say, “I was diagnosed with” but I do not say I “have” it, ever!

Now is a day-to-day moving forward. I tell myself that baby steps are still steps, and I am applying that thought process to my life as well. I do not have the energy I had, and I am working throughout daily. With goals, I have, I need the energy.

Trust God! He truly is the healer! Get involved with other people. Give because it gets you out of yourself and keeps you focused on others.

I have also learned the value of rest. If your body is tired, rest. But do not give up! Remember that “baby steps are still steps!” Set goals. Live life. Get rid of negative influences. Be that living testimony! I like to let people know that I kicked cancer’s butt! Not now, but soon!

At home, my husband, Rusmanni keep me laughing too. When I was diagnosed, we had been married for 13 years and we probably laughed more after my diagnosis than in all our years together. I believed that every positive attitude makes me feel better and put all the people around me at peace.

And while my oncologist team brings peace to those closest to me, the people I see at the medical centre bring that same feeling to her. I feel like I have the best team working on me. They do it with a lot of empathy and a lot of care. They said “You’ve been through the most difficult time part of treatment and sailed through with flying colours. You have high hopes with a true fighting spirit, and I admire that. I am rooting for you!”

I am married, so my sexuality is confined to my husband. That is still very unfolding. It is interesting with your partner, because they go through this all with you. They are not the primary person it is happening to. I get all the sympathy. Most of the table between us. We talk about it a lot. But it is also hard to progress constantly on every front and be responsible for his evolution as well as my own. At some point, he is responsible for his evolution. He hands in there the best he can. It is just something that is unfolding for me. There are no answers yet. It is different.

I have my children. I was busy trying to protect them initially, which was a mistake. There are just 5 of us, so we have a very close family. They knew this was all going on. My trying to keep the emotional intensity from them were a mistake, because they we going through their own emotional intensity about it and their own fear of losing me. Because everyone was so worried about getting me through it, I think they put their own feelings on hold for a while. About a year-and-a-half into it, I had my collapse. All my children and my husband had steadfastness and certainty that I was going to survive, make it. In moments of great doubt on my part, their steadfastness has been tremendous. It has helped me. Sometimes you hang onto whatever you have there to hand on, to believe that you are going to make it through this thing, and it is going to consume you. It is not going be a sad story or the end of your story. You are going to make it through. I think my husband learned a lot about that through this experience, so that is a gift to him.

I believe you can get the best of health care in the world here, but you must pay for it. I had a good health plan, but now we pay a lot of money for this health plan. I paid a phenomenal amount of money every month for my monthly medicines and therapies. I also think it is sinful how much it costs. If I did not have the background and the resources that I have, I might not have had this kind of care, and I might not be here. I am an advocate for the whole country sitting down at a table and trying to figure out this whole health care issue: how to access if for most people, and how to make it so it is not unreasonable how much it costs.

Live strong means it takes a lot of strength to live. It is a way of feeling like a victim. It is empowering because it means that your body is your friend. Your body is able and capable, and emotionally, you are capable. You can live strong. You can be strong in your life.

I personally live strong by taking care of my body, making it as strong as it can be, considering its age, and what I have done to it and what has been done to it. Emotionally, I try to maintain a very clear light forward. Life is not an easy thing. You must have a lot of strength to live, to survive.

I thank God every day, and I tell everyone I love them so they will always know how I feel. I do not think about when or if the cancer will come back. I think about tomorrow and spending it with my children, my husband, family and friends.

Having cancer makes one very brave. I do not give up hope and to continue to have hope, just as my doctor, husband, family and friends encouraged me.

My name is Rosalisa Aris, and I am stage 3B Endometrial (Uterine) cancer soon-to-be survivor.