My husband cried more than I did. He looked at me and said “I’m not ready for you to die.” We told our four children that mommy was sick but it isn’t something they can fully understand. I have 3 girls who are 5 years old, 3 years old, and 4 months old. My son is 2 years old. How could my husband raise four small kids on his own? I’m not ready to leave them. My 5-year-old daughter played a song and as the lyrics played, it struck my husband and I, how can this be real? We cried as it continued to play. The lyrics sang:
“For weeks, I can’t sleep at night. Just tossing and turning. Fearing that someday I'll wake up and you'd be gone”
It breaks my heart knowing this is not an obstacle in life where you can say “Everything is going to be fine.” The statistics are not in my favor. I may not survive the year and if I do, there is only a 30% chance I will live beyond 5 years. Plus, stage 4 melanoma cancer patients have a 90% cancer return rate.
What I wouldn’t give to never have to leave my children to navigate this life without a mother. I’m constantly searching and analyzing what I need to do before I’m gone. How do I prepare my family? How do I plan for them? How do I leave a final and lasting mark in their life so they don’t forget about me? My little ones are so young, one day I'll be a distant memory. How will my husband cope? What will he need and what can I do now to help him and be his partner, even after I’m gone?
I’m dealing with things I never thought about. I need a will, and what about life insurance, is that even possible? Unfortunately, not. It's too late. I find myself working around the clock to get things in place for my family. Thanks to my persistence, I was granted an urgent appointment with immigration to arrange for my children's passport and dual citizenship documents. Giving them the possibility for more opportunities in their future. I am racing against time not knowing when it will run out.
The looming end has me terrified and devastated. But I have to stay strong for my children. I don’t want them to see my fear and sadness. I want them to witness me fighting and doing all I can. Five years of life with my children is not enough. I have to keep fighting and hold on to hope that my treatment works. I pray more options will come my way and somehow the financial piece of all of this can be made possible.
My Story
This is me right before being #diagnosed with stage 4 #Melanoma #cancer sending my life spinning into uncharted territories, August 2022.
What the heck has just happened to me?
I questioned myself and my circumstances. “Did I get cancer because I had multiple pregnancies and a miscarriage all in just five short years? Did I eat too much processed food? Did I neglect myself too much in the name of motherhood, failing my children? Have I not prayed enough? This terminal disease is my fault. It’s my punishment for the failures in my life.” Of course, I know that kind of thinking is ridiculous. I have to maintain positivity and figure out how to beat this. I have to fight to survive. Though the will to survive does not shelter me from the emotional pain. What if I don’t make it? I want to take my kids to Disney World and make memories with them. I want to teach them to see the beautiful things in life and revel in their experiences. I want to be there to wipe their tears away, hear their laughter, and to hold their hands through the ups and downs in life. See them graduate and walk down the aisle. I’m too young for this. I have no time to rest, even though it’s key for my body’s recovery. I have been called “brave,” “strong,” and “an inspiration,” but sometimes I feel defeated. I feel mentally drained and physically exhausted. #4under5 is amazing but difficult enough. I don’t have time to be sick. I need to be a mother. I need to make these memories with them. You always hear, “There’s never enough time”, I’m living proof of this, this is my reality.
My four children, without a doubt, will give me a reason to look forward. My dear friends are stepping up to help, and my mom used to live close enough for regular visits but she went back to America on October 6th 2023. I have a roof over my head and decent health insurance and an extremely supportive husband.
I am a #fighter and I will beat this! I have to…
Me in 2023
I’m scared, I’m sad, I’m angry. But there are increasingly more times when I find myself to be ok. I have found courage and strength.
There is great anxiety and great challenges. Not just about the cancer unknowns, but also about financing cancer. We are accumulating considerable debt. There is no question, cancer is not cheap. But you would do anything to survive, especially with 4 small kids. I have a family and a life. I am not done living. I am trying to be positive and optimistic.
I feel like my body is starting to get used to the treatments. I have been able to leave my home a few times. Even meeting friends for breakfast overlooking the beach, taking the kids to pick vegetables at a farm, and walking a little more each day. I’m starting to feel like I can do this.
The unfortunate part is once I started to feel a little bit better and gain a little bit of strength and wanted to do the things I have always done like making the kids breakfasts and getting them ready for daycare, my mother and mother in law saw me wanting to do things on my own and decided I was better and no longer needed help. I was and still am very weak though and am only able to do a few things before needing to rest to regain my strength.
The fear and anxiety that comes with each appointment, scan, and treatment never gets easier. Every time I go, I have the same reoccurring thought, why can’t this cancer just go away? I wish I could say “I got this'' but I don’t. When we started this journey just 3 months ago, we were in the deepest unknown. We had no idea what would happen, how would I feel, or how much help would I need. This really hasn’t changed. The uncertainty may last an eternity.
At least my treatment right now is straight forward. I have a very strict immunotherapy plan. Immunotherapy works by allowing the body's immune system to recognize, target, and attack cells and melanoma tumors. Even though immunotherapy doesn’t offer a cure for cancer, it does offer a chance at prolonging my life. I am relieved to know that there are different options of immunotherapy and the longer my life is extended, the more chances I will have for advancing medicine to offer solutions. The longer I survive, the more options I may have. Most importantly, the longer my children will still have their mom.
Receiving the treatment is perhaps the easiest part of all of this. Once it’s done, well, that’s a different story. As I sit in the ward, I’m struck with an overwhelming feeling of ‘I don’t belong here.’ I find myself drifting, searching for myself. There isn’t a day that goes by where I don’t think about my health. Will I ever be free? How does someone live once they are cancer free? I imagine living day by day, one checkup at a time, always wondering if the cancer is back. My family doesn’t deserve this, to have a wife or a mom that is sick. But we are in this situation. I will live each day with melanoma and pray it is not a death sentence. Instead, I will see it as an opportunity to learn from our mistakes and to not repeat them, to live better and to appreciate life in full. I have learned so much. To love harder, to be kinder, more compassionate, to use a softer tone and voice.
To be honest I don’t have a big support network. I’m grateful for my husband who is there for me every day. I have had to step down from being the strong independent person I have always been known to be. I have always managed my challenges on my own, never asking for help. Even as a stay-at-home mom to four toddlers, I refused to ask anyone for help no matter how difficult it was for me at times. I now accept any help I can get, even from family members I didn’t exactly have the greatest relationships with. My goals have changed. They have sort of become simplified. They are to live and to fill my children's hearts with love and memories. Setting everything else aside, my ego and pride included, I put everything I have into surviving. Living each day as a sacred blessing. Life is a gift.
I need to heal, I need to survive. I have to get through the treatments and the side effects, to spend time with my family and to make memories while we still can. That is all that really matters now. My core is my family.
The Diagnosis
I’ve always been healthy, with no background of illnesses or surgeries. Since having my first child in March 2018, I have been at home raising my children. I have worked hard to nurture them and give them all of me. I was still breastfeeding my 4-month-old baby girl when my doctors ordered me to stop breastfeeding because cancer treatments had to start right away. I felt lost trying to process how I would get through these treatments and care for my children. I struggled with the immense sadness I felt and for the pain I had for my youngest daughter who never had a bottle before. My natural instincts to breastfeed and to treasure that connection with my baby was ripped away from me. Her siblings were breastfed till 18 months so I had never bottle fed before. I needed to learn how to feed and soothe my baby who struggled so much with the transition. My engorged breasts painfully reminded me of this new reality. I researched ways to train my breasts, to trick my body into thinking my new baby was eating less, begging my body to stop making more milk. I kept reminding myself to be strong and as much as I did that, I couldn't convince myself into believing it was all going to be ok. I began to have self-deprecating thoughts. It was too much all at once.
From the outside, I looked normal except for a round lump bulging out of my neck. It developed during the second half of my last pregnancy. I complained to my doctors, but they didn’t show concern. They said it was from my sinuses and it would go away on its own. It did not.
I went to my family doctor in January 2022. He did blood tests and wrote me a script to make appointments for an ultrasound and to see an ear, nose, throat doctor. I made those appointments but they were months away. I did the ultrasound in July 2022 and the doctor assured me it was not cancer, but a benign tumor. I went to the ENT after that. The doctor acted as if this lump was no big deal. He told me that I could go see another ENT specialist at Assuta Hospital in Ashdod, Israel if I wanted a second opinion.
I called Assuta and the earliest appointment was for December 2022, (It was currently July 2022), and they said there was nothing they could do. I called other hospitals with no success. There were no appointments before December 2022.
So, I waited.
But something just did not seem right.
I went back to the family doctor in August 2022 and demanded I be referred to the ENT specialist at Assuta Hospital as an emergency. At first, he refused to give me a referral to the emergency room because he had no reason to believe it was an emergency. I pushed back, and refused to leave his office without it. He reluctantly gave it to me and I went straight to Assuta’s emergency room where I waited to see a doctor. Once again, I was confronted with doubts, and like the other doctors, they didn’t see any evidence of a life-threatening situation. I refused to stand down and maintained that I had to see the ENT specialist that day. I was told that my doctor was not supposed to refer non-emergency patients to the specialist but they would allow it because of my persistence and obvious concern. I waited until I was finally transferred up to the ENT area where I saw two doctors in training. They were intrigued and confused by the lump on my neck.
They asked me to wait to see the ENT specialist and I waited for almost 3 hours.
When I was finally able to see the specialist, he immediately noticed a suspicious mole just under the lump on my neck and asked about it. I never paid attention to it before. Just by looking at this small mole, he said he was 100% sure I had cancer. He did an immediate biopsy on the mole and the lump.
A few days later, he called and spoke to me directly. He ordered me to come in for emergency surgery to remove the cancerous mole. It was, however, inconclusive as to what the lump on my neck was. During the surgery he took a piece of skin from the lump for another biopsy. I had surgery on August 17th 2022. On August 28, 2022, he had me do an emergency PET CT scan.
He called me back two days later to meet with him as well as a very sought after oncologist. Together they informed me that I had stage 4 melanoma cancer that had started in my neck, and spread through my blood to my liver. He said I had 1 month to live unless I started treatment immediately.
He sent me to Hadassah Hospital in Jerusalem on September 1st 2022 to meet a doctor there. After her examination, she scheduled me to start treatment right away. On September 7, 2022, I started my first treatment where I received two injections called IPI and NIVO (Ipilimumab+nivo).
In October, my doctor informed me that according to the blood tests, I was not showing improvement, especially in my liver. She ordered more blood tests and another CT scan. Finally on November 7, she contacted me to tell me that there did seem to be some improvement and that my body was working to fight the cancer. I was showing a positive response to immunotherapy.
Shortly after however, I was informed that I had a liver toxicity and they needed to hold off on treatment until my liver healed. The prognosis wasn’t good.
By God’s grace, on December 7, 2022, I found out that my liver had miraculously healed itself. I was able to complete my fourth treatment.
I learned that only two-thirds of patients make it to the fourth treatment. I moved into stage two of treatment. My body handled the treatment beautifully according to the doctors.
I will continue receiving one injection every two weeks for three treatment cycles before moving to the next phase which is one injection every month.
If I am cancer free one day, then I will continue the treatment for 6 months. Followed by regular checkups.
Help me pray for my health.
Symptoms since I started treatment:
Weak
No energy
Exhausted
Fatigue
Pains throughout body
Arthritis in my arms (hands, fingers , wrist, elbow, shoulders) and legs (knees)
Vertigo
Diarrhea
Hair loss
Dry skin
Itchy skin
Sensitive to smell
Difficulty eating
Headaches
Unstable mood
Unstable thyroid function
All the symptoms are things that come and go. I never know what I will have, or when, or for how long.
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