Living with cancer is daunting. It’s an unwelcome intruder that sneaks into your being and tries its very best to wreak havoc on your body, mind, and soul.
Unfortunately, it upsets not only your life; it also disrupts the lives of the ones you know and love.
As a person living with chronic myelogenous leukemia (CML), I realize that my diagnosis disrupts the lives of everyone around me. In some ways, it’s easier to be the patient, because I’m doing something; I’m fighting the disease, I’m in it to win it. I understand my role and I actively take part.
But loved ones on the outside looking in often feel helpless and angry. Angry that we are ill, angry that they have to cope without us, angry that they cannot do more, and angry that the future is uncertain. And they’re supposed to tolerate us being short-tempered, aggressive, pensive, sad, depressed, and unreliable as we struggle. At the same time, it frightens them to imagine a world without us.
As cancer patients, we must realize how difficult it is for loved ones observing us battle with our bodies. It is extremely difficult to watch someone suffer, and we must remember that they feel afraid and overwhelmed, too. But while they may feel inadequate, they are willingly taking the cancer journey with us, and that makes all the difference.
My husband has had to endure the brunt of my illness. Leukemia has affected him the most. Our daily lives have changed immeasurably. I am no longer able to perform the daily tasks of running our home in the same manner as I was before diagnosis. He is left to pick up the slack.
He does most of the cooking and shopping, takes care of everything outside of the house, and often waits for his favorite shirt to be washed. He has accepted that the dust may remain longer than we'd like, and that I am often not up to conversation and entertainment.
He understands when I cancel plans and accepts the fact that our social life has been greatly reduced.
He has become my chauffeur, escorting me to doctor visits, testing centers, and pharmacies. He listens to my moans and groans and understands when we are late for appointments because I must make one more trip to the bathroom.
We used to be competitive dancers, teaching dance throughout the country. Since I am not longer able to do so, my husband has kept his activities local, just to mollify me.
Probably one of the most difficult aspects of living with CML has been adjusting to how the disease and its treatment has affected our intimacy. Between leukemia and the side effects from its treatment, my body has gone through significant changes, leaving me physically fatigued and emotionally drained.
There are physical changes in my body that cause pain during intercourse and my desire for sexual intimacy has decreased. Adjusting to this aspect of our life has been difficult, and we have accepted the fact that the lack of sexual desire does not mean that there is a lack of love and respect. On the contrary, I actually love and respect my husband more for his understanding.
How do you tell your children that you have leukemia?
Very carefully, and with all of the facts.
I am very close to my children, so I knew that telling them that I had cancer would be devastating to them. I knew that they would be scared that I was going to die.
Once I told them that my type of leukemia was manageable, they were able to breathe again. However, my daughter sometimes has nightmares of me dying and suffers from anxiety. My boys always show concern but seem to keep their fear well hidden.
They have accepted that I do not have as much energy as I used to, and have adapted to my ups and downs.
I remember I was at my parent's home when I received the phone call informing me that I had leukemia. I lived two hours away yet was told to go straight to the emergency room. When I asked if I could drive myself, I was told “no,” which left me little choice; I had to tell my parents.
This realization hurt my heart. My parents had already lost a child when she was only seven years old, so I knew telling them that I had leukemia would be a blow.
I will never forget the look on my mother’s face; she was trying to be strong, but she was terrified. My father wore a determined mask and filled me with strength on our ride to the hospital. He inspired me to fight fiercely and to always have hope.
Once it was confirmed that my type of leukemia can be managed, and that I would likely live many more years, my parents began to relax.
I believe that we made more of an effort to spend quality time together, although I know that the thought of losing another child was never far from their minds.
I have two younger siblings; one that was alive when my little sister died, and one that was not. Telling them that I had leukemia was rough. I knew that they would be frightened and confused, as they expected that we would all grow old together.
Once it was apparent that I was not dying anytime soon, our lives settled back into a new normal. One that now includes, "How are you?" many more times than in the past. One that never fails to express their concern over my health and never forgets to ask about my latest test results.
I have been blessed with the best friends on the planet! They have stood by me, supported and encouraged me, and are always there to lend an ear.
They are the ones that I’m able to freely express my own fears, doubts, and frustrations with. They are the ones that I feel most comfortable with when removing my mask.
They understand when I have to cancel plans; they accept that I am not a quick as I used to be, and they accept the new me, limitations and all.
They commiserate with me and agree that CML sucks!
I am very fortunate, but not everyone is. Many other people living with CML tell very different stories. Their family and friends aren't always supportive and often accuse them of faking their leukemia, and being melodramatic, while looking for attention. They don’t like having someone with limits and disabilities disrupting their own lives. I believe that they fear cancer may be contagious. This is heartbreaking.
Closer in spite of/because of leukemia
My leukemia has affected my relationships with my husband, family, and friends deeply. However, while it’s been challenging, I think it ultimately has brought us closer. Living with leukemia has lit a fire under our bums to spend more time with each other, as we all now know how quickly life can change.