My Breast Cancer Journey - Part 3 by Aeliya Jaffar
These blog posts will be a humble attempt on my part to tell my story in order to help other women feel like they are not alone in the terrifying experience that is cancer. I was diagnosed with bilateral invasive ductal carcinoma (IDC) in May of 2021. Every step of the way, from discovery of the lump to testing to diagnosis to treatment, was uniquely challenging and eye-opening. Thank you for following along with my journey.
Read Part 1 and Part 2.
“O Soul that art at rest! Return to your Lord, well-pleased (with him), well-pleasing (Him). So enter among My servants. And enter in My garden.”
- Holy Qur’an-Surah Fajr 89: 27-30
“Cancer makes you realize that your body is just a shell; your real self is your soul.”
- Bilquis Hyder, survivor
Very often, we do not want to talk about the mental and spiritual anguish that we suffer from, along with physical suffering. I think it is absolutely imperative to include a post on both of those perspectives because they are what make and break us as humans, regardless of religious beliefs. Physically, your body will heal and scar (eventually), but if your mind and soul are still broken, is hard to thrive. It is certainly difficult to share, especially publicly, so I will divulge as much as I feel is appropriate in the hope that it once again helps anyone who needs it. My approach was Islam-centered, since that is the religion that I follow. However, I think a lot of religions have similar beliefs and thought processes and we all share the same emotions at the end of the day. I hope this piece can bring comfort to every reader and open a dialogue on the greater meaning behind these struggles.
The irony was too much: the source of nourishment, and therefore life, for my children had transformed into the source of disease and potential death. Had I done something to induce this? What was it? A lack of proper stress management, poor Western diet, genetic mutations, man-made havoc in the environment, or was it something uncontrollable from God, such as a punishment that I deserved because of sins or a test I had earned because of good deeds? What exactly was happening, and how was I supposed to process this; was it meant to be a catastrophe or the pivotal moment of my life where I peak into the best possible person I could ever be? The dichotomy of extreme elevation vs extreme punishment felt confusing. Was it okay to be angry? Did anger at the diagnosis and treatment make me ungrateful? Did crying more than five times a day, the amount we are supposed to pray and at minimum remember God, mean I was a bad Muslim? I felt inadequate in every which way: as a mother, wife, daughter, professional, Muslim and human. One of the worst parts throughout the entire ordeal was the effect on my children and on my ability to parent them. I felt a deep sense of inadequacy as a mother and that I had abandoned my baby especially. My older 2 daughters were able to come and go more frequently at the time of the diagnosis and surgery, and I could interact with them without having to hold them or carry them, but the baby was different. I was unable to care for her for 4-6 weeks post-surgery and for the second half of radiation therapy due to burns. I physically could not pick up more than 5 pounds for a month post-surgery, and it felt like forever until my incisions healed and stopped aching/hurting. It also took time for the nerve pain to get under control post-surgically to where I felt like I could comfortably hold her. When I finally felt better enough to do that, the radiation started and it catapulted me back to what felt like square one during the 5th week when I started to burn. My mind and heart ached at the thought of more separation from my baby, and I wondered what she thought. Is she wondering why her mother abandoned her, doesn’t want to be with her, doesn’t love her enough to take care of her. Would she remember when she was older? Another fear that plagued my mind since the beginning of this process was if I die, who will raise my 3 girls with the same love and care as their mother? Children need both their parents, and daughters definitely need their mothers.
In 2020, I had suffered from postpartum depression (PPD) and anxiety (PPA) after the birth of my youngest. Coupled with the onset of the Covid pandemic, the mental struggles weren’t just a passing phase or baby blues. My OBGYN had diagnosed me during the 6 week postpartum checkup and prescribed an antidepressant, sertraline, which was supposed to be safe with nursing. I filled the prescription but didn’t take it out of fear of side effects for both me and my infant; 2 months after my daughter’s birth, however, I was still struggling with managing my emotions and the intense pressure of a demanding newborn and pandemic parenting for all 3 of my children who were now home indefinitely. I was visiting my parents in June and my dad told me at breakfast matter-of-factly one morning after a particularly rough night, “You need help.” He helped sign me up for counseling with an Islamic scholar who is also a psychologist, Seyed Hadi Yassin. It was my first introduction in life to talk therapy and life coaching. At first, it felt embarrassing and almost invasive to disclose some of my innermost feelings and problems, but soon I realized how helpful it was. It was incredibly validating and empowering to get the support of someone who was learned in both science, especially the brain, and religion. He lives in a different state, so we conducted the sessions via telephone and Skype. I also started taking the antidepressant a month or two later which made a noticeable difference, as well. These two tools proved to be exactly what I needed to face this cancer crisis the following year. If I had not been equipped, I wonder sometimes how things would have played out. Seyed Hadi also did joint/couple sessions for me and my husband in order to involve him in the healing process for postpartum, which were extremely helpful.
Aeliya seeing her daughter for the first time 8-10 days after surgery.
I had stopped doing the counseling around fall 2020, but found myself again one day in late May 2021, sitting hand in hand with my dad after they had arrived to our house post-diagnosis, discussing all the questions above that were plaguing my brain. He again suggested I resume counseling with Seyed Hadi. I agreed it would be good to incorporate counseling with all that was going on, and he again called him for me and set up the sessions. Having a voice of reason like my father’s by my side was so imperative during this time because I was simultaneously in turmoil but also emotionally and physically spent. I didn’t have the bandwidth to initiate this service on my own, and the need for an advocate was essential. In other words, I am not sure that I would have had the strength and courage to get help had my dad had not pushed me in that direction and physically helped me get the ball rolling.
Seyed Hadi’s approach to handling the diagnosis and upcoming treatment was practical and positive. He worked with me to reduce the fear I had surrounding the diagnosis by reviewing steps one at a time that I could take to help myself and my family. His approach to Allah (SWT) (God) is from a positive angle; both during the PPD counseling, as well as during cancer, he reviewed a hadith (tradition) that God created love and reserved 99 parts of it for Himself for His creations; he sent 1 part to Earth and the mother receives 99 parts of that 1 part. That helped me process amount of love God has for my children vs myself; he also said that Allah (SWT) in his Divine Justice would put the love I have for my children in others if something were to happen to me. I did see that in how all of our relatives, as well as community members, showered their love, affection, and mercy on our children throughout last year. He encouraged me to make this threat into an opportunity to get closer to Allah (SWT) (spiritually benefit), come face-to-face with anxiety and learn how to manage it (mental health benefit), value family relationships, and to improve my overall health (physical benefit). His approach to God and what He was trying to tell me was not negative; he taught me that God does not punish brutally like this; he is first and foremost Rahman and Rahim (Beneficent and Merciful). His explanation helped me process several of the questions I posed above. He did review that hardships are a means of spiritual purification, so they can raise a person’s soul by acting as an expatiation of sins or He elevates us to a higher level by causing us to go through the hardship.
I knew I needed to talk to some young Muslim cancer survivors ASAP. The first two people I called were my cousin Shubair Jaffery and a long-time family friend Bilquis Hyder. Both had experienced cancer and been treated at MD Anderson so I wanted their guidance. They are thriving in life, as parents, spouses, professionals, community members, and I hoped to see myself in their shoes in a decade, alive and healthy. Both of them told me to turn toward God and His power of healing, along with following all the treatment protocols set by MDA. Even though we each had different types of cancer, it was their true empathy and continuous support that helped me overcome many hurdles, and I tried to emulate their courage. I also spoke to other breast cancer survivors in my community, which gave me a very specific idea of what to expect. Another friend who had experienced a different illness, lupus, was a huge support and inspiration for me as a sick mother. My friend Sabeen Virani survived a massive lupus attack and coma a decade prior, and I turned to her and Bilquis Apa a lot when it came to grieving my role as a mother to my baby who I could not care for the way I wanted to. Sabeen told me she had to learn how to walk again with her toddler, since she was an infant when she went into the coma, and she lost her ability to even use her arms and legs. I could not imagine the pain and difficulty she endured but seeing her today, no one would even know because she is truly thriving in her role as a mother, wife, professional, and so much more. I pray for the health of all the people listed above; may God continue to restore their health and make them successful in every angle of life.
Right after the surgery, I had to keep repeating “Inna lillahi wa inna ilayhi rajeeoon (Indeed we are from God, and indeed to Him we will return).” It was the only way I could accept it; the loss was too intense, too painful, too jarring. The acceptance that the world is not permanent, our bodies and pain are temporary, healing is still possible, and truly imbibing Bilquis Hyder’s words that the body was simply a shell were what helped me in those moments of hardship. There were drains that needed to be emptied twice a day, and I recall having a panic attack one day while my husband was cleaning them. It felt like a boulder was crushing me, and I could not breathe. Luckily, my surgeon had prescribed a two-week course of anti-anxiety medicine which certainly helped in those initial days. She also referred me for a psychiatrist consult with a doctor at MD Anderson. I did a telephonic visit with her, and she helped me organize and validate my thoughts, do some cognitive behavioral therapy to help reframe anxious feelings, and told me to continue taking the sertraline while going through cancer treatment.
Aeliya's cousin, Insiya, designed this beautiful artwork to support her breast cancer journey and had it printed on t-shirts for the whole family.
My family and in-laws organized Zoom prayer meetings with each respective family prior to the surgery. I felt the solidarity our families were offering for the sake of my health and even from afar, their prayers held me up. My cousin, Ali, and his wife, Eman, are seminary graduates/leaders. Ali gave two speeches in which he highlighted the Quranic quote at the beginning of this post. His explanation on what a peaceful soul who is tranquil was extremely impactful and powerful. He connected it to how we handle hardships and trials in this world, and how the grandson of our Prophet Mohammad, Hussain (peace be upon both of them), is the imbibement of these verses as he and many of his family members were martyred on the plains of Karbala, Iraq, 1400 years ago. Anyone who hears the story of Hussain (peace be upon Him) is shaken by the strength and beauty of his sacrifice for God, and I used to listen to his eulogies every time I drove to MDA because it ultimately brought me the most peace in those moments of fear and dread. Eman wrote me a letter in which she beautifully explained the detachment of the body from soul and a vehicle of getting closer to Allah (SWT). Her words were so soothing and so beautifully expressed; I had to include an excerpt in this post:
“…please give yourself time to both physically, mentally and emotionally recover. It is okay to cry, sob, grieve. It is natural to have an attachment to our bodies. Our souls are associated with them and we have been blessed with a natural love of one’s self which in this world includes our body and soul...this attachment is why we have recommendations to stay with the body of the deceased person for the first night since the soul is still associating with and is close to the body. And with time it fully disassociates.
Our bodies are the means with which we can fully experience and live in this world. But the reality and true self is our souls. So here we should stop for a minute and thank Allah (SWT) for trials in the means and vehicle (ie the body) and not solely in our soul and spiritual stations.”
Certainly, this experience helped me to detach from the world and its pleasures, allure, and charm. I suddenly recognized the temporary nature of everything in it, that nothing is permanent here, and no amount of education, security, or wealth was going to keep things always positive, always charming. There was a much bigger goal, a permanent one. Even though my children felt like my whole world, I could not even create a permanent presence with them, either. My girls were the flowers in my garden, but it took this experience to realize that I am not the gardener-God is and He will see them through every storm.
I used to fear death a lot, but so much of my treatment reminded of the stages and steps leading to death as a Muslim and beyond. I was continuously isolated because of Covid restrictions and no one was allowed to accompany me into the buildings or exam rooms at first, from the biopsies until the last exam done before surgery. I was alone in the pre-op room; my husband could only come to the waiting room and then we had to physically separate. During the mammograms, I remembered the squeezing of the grave. During the MRI, I thought of the claustrophobic feeling we fear in our graves. I thought about how being operated under anesthesia is like losing control over one’s body similar to the time of ghusl (washing of the body) and burial and that we are at the mercy of the people around us to treat us properly and give us our rights. I fear death a lot less now; I would never wish for it prematurely but I accept it as a reality and relinquish that need to completely escape it.
My cousin Butool compiled a book during the time of Eid-ul-Adha which was a month after the mastectomies. I had hit a low point, and this book could not have been gifted at a better time. It had various quotes from the Quran and Prophets and Imams, as well as different prayers, and personal messages from family and friends. The front cover of the book had one of the most famous Quranic quotes: “Verily, with hardship comes ease.” (94:6). I certainly felt the ease in so many directions, from the care given by our families, the constant pouring in of prayers and love from the community and family, the food train Butool set up with many of my family and friends so I wouldn’t have to cook while my mom was out of town, gifts sent for my children to bring up their spirits, gifts sent to me in the form of books, blankets, pajamas, flowers, spa items, radiation treatment help, and so much more. The beauty of everyone’s love is what I remember the most from last year, and I pray that God gives ease to everyone who helped give me and my family ease.
“And We will surely test you with something of fear and hunger and a loss of wealth and lives and fruits, but give good tidings to the patient, who, when disaster strikes them, say Indeed we belong to Allah and indeed to Him we will return.”
- Holy Qur’an-Surah Baqarah, 2:155-156
Read Part 1 and Part 2.
11 comments
Thank you for all your kind and wonderful comments, and I am humbled by my elders’ encouragement-Siraj Dada, Abbas Chacha, Qamber Chacha, and the rest of you wonderful friends and family who took the time to share your love and encouragement. I love and appreciate all of you.
Dearest Aeliya
It is unbelievable that at your young age you had to face so many life threatening situations .And you faced them with such indomitable courage and faith in Allah and masoomeen.I often wonder why Allah puts His purest souls to such terrible trials qqq .Is it to test them or to make them an example for the lesser humans to try to emulate .After all it was He who put his most beloved son Hussain to the most excruciating trial the like of which we will never see.Could it be that His love of you made Him put you through this extreme trial?I think so.
By your exemplary courage and supreme faith in His mercy .you have set an example for generations to come
You and your larger family are always in my prayers .I love your dad as much if not more than my own two sons
Bless you and your wonderful family .Always
SIRAJ DADA
Beautiful Aliya, Your journey brought tears to my eyes, your strength and your faith carried you through this rough journey and of course prayers from all over .Thank you for sharing with us .You are loving and are kindly disposed. May you and your family be protected by 14 Masoomeen.Ameen.
Beautiful Aliya, Your journey brought tears to my eyes, your strength and your faith carried you through this rough journey and of course prayers from all over .Thank you for sharing with us .You are loving and are kindly disposed. May you and your family be protected by 14 Masoomeen.Ameen.
So beautifully written and expressed. Thank you for sharing such raw and vulnerable moments and your entire journey. This is still just a glimpse of what you endured and gained but I am grateful for the glimpse. Praying we can continue to benefit from your experiences and that they serve to be a source of tranquility and support for anyone else in an extremely challenging situation. I am so happy that these more beautiful moments are here.
“Surely with difficulty is ease.” (Holy Quran 94:5)
Love you.
786/202 Excellent write up. Never imagined all the trauma and the strength you have to bravely face the diagnoses at such a young age. Read dua 15 from sahifa kamila with English translation of William chittick if you are able to find. Might be a good write up to print in a book form anonymously for larger audience to share on one of the book sellers
I just had the chance to read your blogs for the first time and it brought tears of joy as to how you’re helping others by sharing your journey. I was open too, about my diagnosis with the intention of informing others, but the details in which you’ve been able to chronicle speaks volumes of your inner strength, physical , mental and particularly at the spiritual level.
Salute to you and Reza for being role models during this difficult journey. Duas as always for continued blessings for Duniya and Akhirah.
I am in awe of your bravery in sharing your story, the grace with which you handled this difficult time in your life, and the inspiration you continue to be in showing the rest of us how to respond to challenges we face in our lives. You are always in my prayers. Sending you so much love and duas.
Cancer survivors like You are real heroes. You could have given up, but you chose to fight. You chose to see the light at the end of life’s darkest tunnel. I am so proud of you my friend, your story is truly inspirational ❤️
So touching and so eye opening. Thank you for sharing this reality of life Aeliya. Prayers for you daily. Love you 💐🙏🏻💝
So touching and so eye opening. Thank you for sharing this reality of life Aeliya. Prayers for you daily. Love you 💐🙏🏻💝
