by I lay here next to him in his room, and he is cuddled right next to me. His hair smells fresh and nice, and he is telling me something that happened at school today. I am trying to focus on the contents of his story, but my mind is drifting in and out.
It has been barely three days since my diagnosis of Stage 4 metastatic cancer has been confirmed. My 9-year-old boy is lying next to me in his bed, and I am staring at the fan in his room. He gets hot easily and loves to have the fan running on high at night. The chain controls have two planets hanging from them. I am sure he can tell me which ones they are along with their special features. They are spinning fast with the air, much like the thoughts in my head.
I am going in to meet the oncologist tomorrow. Tomorrow, my treatment plan will be determined. I am really hoping that I get to keep my hair, not because that is the most important thing to me, but a hairless mommy is just a bit freaky to the kids. Nothing says cancer more than a bald head. I haven’t told him yet.
He has grown up under the shadow of cancer for the last two and a half years. He has seen me sick and he has seen me bald. I haven’t been able to rack up the courage to tell him that my cancer has returned. I really don’t know how to explain to him that his mother was diagnosed with an incurable illness. How do I actually destroy his innocence myself?
How do you explain to an eight-year-old, the concept of death, dying and an incurable illness?
I wish I had let him have a pet. A fish, a hamster, something small. Something small that had died. So I could tell how he handles grief. Something insignificant in his universe that could help me answer some of my questions. The earth rotates and the planets spin. The glow in the dark planet set hangs from the curtain rod as well. Everything in nature is supposed to stay in its place to keep the balance. But what about me and him? Why must I change his orbit?
My gaze catches the telescope that sits on the chest of drawers consistent with the theme of the room. He has been obsessed with planets and the universe since he was three. An early reader, he would bring these little planet books from the library and we would read those to him over and over again. Later for the longest time, his favorite book was the “Atlas of the Universe” and I would get inundated with the universe factoids that I would nod my head to as he rattled them off and followed me to the bathroom to make sure I understood.
His universe is under threat by something that was seen under the microscope four days ago. Those metastatic cells, gang banging through my body, found a new home in my liver. He could tell that something was wrong when I had my liver biopsy. The next day when he came from school, I was still in my pajamas, a very rare sight. That evening, he commented to his dad, “Mommy looks just like she used to look when she had cancer.”
My heart sank, and a psychiatrist who always knows what to say was speechless. I made lame excuses that it is because I am not in my day clothes and lied through my teeth.
The fan is whirring, and my mind continues to spin. How exactly do I sit down with him and what words should I use?
“Mommy’s cancer came back?”
“Mommy needs to start treatment again?”
“Mommy feels not so well these days?”
20 years of medical practice and dealing with complex issues, seeing death with my own eyes and discussing terminal diagnosis with patients, one would think, I would have some ability to break this to my son. But no, all this mother is capable of is his wiping her tears and hiding her face in his planets comforter.
He said to me, “Mommy I think I have figured out what www means?”
I think is the “whole wide world” or something.
I wipe my tears and say “Very close, it’s the world wide web”
He, then, cuddles some more, the whole wide world shrinks in my arms and he dozes off.
The clock keeps ticking. It’s the shape of an iPad, I found it on Zullily and was very pleased with my purchase. His chess trophies stare at me and the Legos stay still. He is gently breathing in his sleep.
His universe is under threat. I think, “Thank God he has a telescope so he can watch mommy when she becomes a star.” My eyes fill up again.
On the wall there is a decal that I thought would be good for him to look at every day,
“Today you are You, that is truer than true. There is no one alive who is Youer than You.”
Let him sleep one more night with his innocence. There is a lifetime ahead of him to learn about death and dying. I am alive today and that is truer than true.
Goodnight my son!
Goodnight stars!
Goodnight moon!
Goodnight to sons everywhere!
Left Boob Gone Rogue 
I am so sorry to hear this. Words are insufficient to tell you how much I hate this. For you. For your son. For everyone whose life has been rudely interrupted by cancer. My kids were 8 and 10 when I was diagnosed, and I understand the sadness (and guilt, perhaps) of knowing that our kids grow up in the shadow of cancer, as you so eloquently put it. Every time the topic of cancer comes up, I wonder if my kids, now 16 and 14, are immediately transported back to my cancer, to the fear and uncertainty.
This I do know for sure: our kids are tougher and more resilient than we realize. Telling your son that your cancer is back will be brutal, but I trust that you will find just the right words. His orbit will be changed, but you will still be the center of it.
Thank you. I so appreciate what you wrote.
I have not lost my hair through 4 1/2 years of treatment for Stage IV. It thinned enough to be noticeable to ME at one point (taxotere and avastin before avastin got black-boxed), but no-one else could tell. Even my oncologist said “You still have all your hair!!!” I pray it stays the same for you!
My son was a 14 year old freshman in high school the first time, and it came back 5 months after his graduation, when he was 18. He’s still scared but won’t talk much about it at all. He does ask about my appointments now, but doesn’t want a whole lot of detail.
There’s no right or wrong way to tell your son. Just like how you do cancer, it’s right for YOU! You know that little guy best, how to tell him, how much to tell him, what not to tell him.
You have a host of men and women in mets-land to walk with you through this. You are not alone.
Love you Andi!
I’m so sorry. You’ll know the right time and you’ll find the right words when needed. You are the expert on your son.
I was known to be metastatic for almost 18 months before my son heard me use the term, “Stage IV.” He was just shy of 13 at that time and he knew what Stage IV meant. I had plenty of time to adjust to my diagnosis before he needed more information. My daughter, 16 months older than him, had asked questions earlier, but was also able to process the information.
I am very open with my teens as it’s important to me that they hear information from me first and not from anything I write or from what others may say.
You’ll know. It won’t be easy, but you will know.
❤️
I dont know you but reading your syory is all too real to me. I was diagnosed metastatic off the bat, at 29, while 6 months pregnant with my son. My liver was covered, and it was in my bones as well, but I am happy to report that I am now NED amd my son is 16 mo. old. But I dread the day, the day I have to explain everything to him, the day it comes back. Just know, hope always, and you’re in my thoughts.
Dear Uzma,
I came across yr post through mutual friends, the first time I read abt you, you had kicked cancer right where it mattered and i was in awe of your courage, it reminded me 9f my father who I had lost to this wretched disease just a few months ago.
It was his first anniversary a week ago, I still can’t use the ‘D’ word. Yr courage continues to remind me of him.
I wish I cld advise you on how to prepare your son or say something philosophical to console you but all I learned is keeping quiet and simply letting the other person know they are in your prayers is just as good. So I pray for your full recovery, for Allah to give you immense strength to kick the disease once again, for good. Ameen
kids are the only ones who keep us protected from the evil, sadness, stress and unimaginable pain…may u live long and healthy…and be your son….the prince who kills the demons…
You are a brave woman and leaving a legacy for your kids to be brave and strong in tough times. They have been with you through this journey and will help you finish this journey together. May God bless you health and strength to go through these hard times
MA you are amazing and so strong .. May you have a long healthy happy life to see your family grow and only give you pleasure and peace .. My sincerest Duas for you!
My heart goes out to you. At times like these one realizes the importance of the real things in life. Everyday we come closer to the grave yet do not notice it. Sometimes I feel that people who are diagnosed with such diseases are the lucky ones. At least they make the most of the time they have with their loved ones. We take life for granted, over and over and over again. Lying down with your son while he drifts into blessed sleep, is one of the most precious experiences of life.
In the words of Kahlil Gibran (please forgive me if I misquote), “Yes, there is a Nirvana. It’s in leading your sheep to green pastures, in putting your child to sleep and in writing the last line of your poem.”
Stay strong Uzma. Remember Allah (swt) says in Surah Alam Nashrah “After every hardship there is ease. Indeed, after every hardship there is ease.”
May Allah grant you complete shifa and may you live a long life and watch your son grow up and achieve all that you have dreamed of, for him. ameen.
I am so very sorry. I don’t have the words or the heart to tell you that kids are resilient, etc. They are still kids, and can hardly comprehend that their parents aren’t eternal. From the little I know about you, i have read the wisdom in your blogs, and I believe that wisdom wll guide you in letting your son know what this illness will mean for him,
Be strong and kick cancers a-s!
Uzma, I have been reading your blog since seeing it on the women in psychiatry FB page. Today I had a partial mastectomy and will be undergoing radiation soon. I am reading this post while my 8 y.o. daughter lies next to me, sleeping. Your thoughts resonate with me deeply and I appreciate you sharing your journey. Thank you.
Be strong…. May Allah give you health and you may live long to see your son’s successes…. Pray to Allah and ask him to pray for you!! Allah will answer the prayer of innocent in sha Allah!
If cancer gives us one thing it is an intense awareness of the preciousness of our lives and families. These moments with your son will give him a strength of character and an ability to deal with life. We don’t want our babies to have to face this cancer journey with us, to be touched in any way by it, but your love will give him strength as his will help you through this. You will know how and when to tell him and your love will protect him and give him strength.
I am so sorry you have to go through this Uzma. My heart is with you in these tough times.
What a beautiful tribute to your son and your love for each other. As a mother, I can’t imagine what it must feel like to have to talk to him about this. I know how I’ve struggled with my toddler and how to explain what was going on with me. But this, of course, is different. Your in my thoughts, Uzma.
I pray with all my heart that you get to see your children grow up and do great things, all in good health. Your writing inspire me and help me get through medical school and make me realize realize why I chose medicine in the first place. This post has a special place in my heart. You’re a worderful mother and I hope you get all the happiness in the world. 🙂
This is very moving. Well written. My heart goes out to you.