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for better or for worse…

In sickness and in health. But, how many other married couples have to sustain their marriage and lives through not one cancer battle, but two? How many families can survive the emotional, financial and career stress of being hit by back to back cancer diagnoses? When we were first married, my husband was diagnosed with stage IV Hodgkins, what we sarcastically refer to now as “the good cancer”. We didn’t have children. We were both working, and my husband had good insurance through Columbia University where he was doing his bachelor degree. It was devastating. Even though his chemo treatment was standard, and he was able to take advantage of a clinical trial in order to prevent any lasting side effects to his heart. It was a difficult treatment and emotionally overwhelming for both of us. We have no family here in the states*. And, we had decided not to tell anyone, so as not to affect his employment opportunities. Completely on our own after a year of brutal treatment, my husband’s cancer was cured.  He completed his degree Magna Cum Laude, and we both continued to work through the entire thing. It took us a few years, but we even paid off our extensive medical debt.
In the meantime, we realized that our window to have a child was closing, between my age and the impact of his treatment. In addition, I was having some health issues that impeded our ability to have a child, (which we only learned 16 years later were the result of a precursor disease to my cancer.) So, I quit working in order for us to focus on trying to have a child and commit myself to the time-consuming and extensive fertility treatment. There were some fairly serious difficulties during that time, which resulted in a ruptured ectopic, me flatlining during surgery and a several weeks stay in ICU. But, after 8 years, we finally were able to have a gorgeous baby girl!
I had hoped, after she was born, we could finally relax, and enjoy watching her grow together! We could pay off yet more medical bills and start building a nest egg for her and our future. At 1.5 while chasing her, I snapped a bone in my foot (another cancer symptom). It was pretty shocking and a huge inconvenience for our new family to have to deal with a mom in a wheelchair for 2 months! But we managed, and I healed and we soldiered on!
By the time she was ready to go to kindergarten, I was eager to get back to work! I had already started taking meetings with colleagues and potential clients, when I was diagnosed with multiple myeloma.
And despite our incredible patience and fortitude. Despite all of our planning, and hard work, and dreams and wishes just to be able to finally, have a family. Despite our simple dream to live our lives without the stress and expense and chaos of disease.  We now not only had cancer, but an incurable, incredibly expensive and debilitating one. Because, when one person gets cancer, the entire family gets cancer. And now, instead of just us two muddling through and making it happen, we have to ensure it doesn’t destroy our child’s life and any stability we can provide her. Especially, when you are only two people with virtually no support system, that can be nearly impossible.
In addition, we have learned, that when you are vulnerable, people often desert or even take advantage of you. We are trying to keep the cancer to ourselves again, because we see how compromised it leaves us to people who want to hurt our daughter or take advantage of our situation. There is so much prejudice against people who are disabled or have a disease.  While it doesn’t bother us, we have already seen it directly and indirectly hurt our child.
We signed up for this. For better or worse. For sickness and health. We just wish our child could see some of the the better, as we have. And not only have to suffer through the sickness part. She has already suffered so much as a result, but she doesn’t realize that’s why. And while so many people say things to me like, “Oh, kids are resilient! Oh! it’ll be great, she seems so well-adjusted.” But this is not the same as not making the soccer team or losing a friend, and I wish people wouldn’t pretend it was. Yeah, my kid is super tough and mature and resilient, and that’s ok sometimes, but I wish she didn’t always have to be that way. They really don’t understand the impact of what something like this does to a family, and specifically to a child and their sense of security and self.

So, that is our vow to her. That despite me being diagnosed so early in her life, hopefully it’s not only the “worse” and the “sickness” and the consequences of that she has to experience,  but that she can experience in her young life some of the stability, happiness, carefree joy and security that should also be part of the deal. I pray everyday we can deliver.

 

 

*ED. clarification, most people already know this who know me, but i wanted to be clear, despite lack of a family unit stateside, I am lucky to have a wonderful, supportive and loving sister who is an amazing aunt to my daughter, but sadly, she lives very far away and has an incredibly demanding career. much like our family in israel, we wish we weren’t forced to live so far. 

3 thoughts on “for better or for worse…

  1. Darling Michelle….I know you keep digging down deep to find more strength. I’m sorry the challenges have been so great. One thing is for certain. ..Elle knows she is deeply loved. Amen.

  2. I can’t begin to think of what you are going through or your life without a family support system. Although we have never met, I feel a closeness to you like you are a virtual sister. You are always in my prayers. Hugs.

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