how your vaccine can save my life

let me start by saying that i believe that every parent has the right to decide what is best for their child. they have the right to prepare them how they see fit for the life they believe they should lead.

i also believe that children have the right to be protected, if not by their parent, by members of the community who care. i believe children have the right to a safe life where their emotional and physical needs are provided. i believe children also have the right to a childhood.

i also have learned as a parent, that once you have a child. you realize, despite any prior anti-social leanings, you are forced to engage with the world. you are forced to live with and deal with other people, people you may have had no interest in. you are also forced to consider how your decisions impact not just yourself, but your child’s generation.

for some parents, like myself. we care very much about all the children in our lives. i wish for them, the same as i wish for my child. i feel as protective of them, as i do my own. for those parents who do not wish to vaccinate their child. i really do understand their concerns and their wishes to provide their child with every opportunity for a safe and healthy life.

but as parents, we are also forced to teach our children, that their rights stop when someone else’s rights are infringed. if you want to spin around, great. if you do so and whack somebody in the head, then somebody else is paying the consequences for your desire to spin around.

some of the most potent ways that we can protect ourselves or our children is by acting not in isolation, but as a community. often, it is those social contracts that ensure our children’s safety the most. but if we begin to disregard those prior agreed to standards in favor of our own individual needs and insistences. as we spin around to the beat of our own drum, we are inviting many consequences.

same holds true for vaccines. vaccines are primarily effective only if a vast majority of us agree to them.  thus far, we have all been in agreement and have kept many preventable diseases at bay. now, however, people are choosing not to vaccinate their children to protect them from what they feel could be potentially harmful side-effects. they want their child to be safe and healthy. they don’t want their child’s life destroyed. they believe vaccines can do that.

well, i know that not using vaccines could destroy my child’s life. not just because she, or her friends are at risk for getting a very serious disease, but also because i could.

i am not immune to the measles. and because my immune system is impaired, i am not able to get a vaccine, because it is potentially life-threatening for me. tragically, of course, the disease is also potentially life-threatening for me. until recently, i could be assured that i would be protected from the measles because of herd immunity. no more.

so, your child is fine. great. but what does that mean for my child, if she brings home measles one day from an un-vaccinated playmate? perhaps a new strain that has mutated and is now untreatable. not only can she get ill herself, but her mother could become fatally ill.

how am i supposed to protect my child from that?


no miracle too small or too massive

it’s a miracle!!! :) just heard back about my bone marrow biopsy. the numbers have only crept up, ever so slightly and my ratio dipped hugely! so now, we are stepping back from treatment and back to watch and wait!!!!! with a whole lot of luck, maybe we’ll even have a whole year before treatment :) but i will be going in every month to check, of course.

anyway, yep, in the same week, we have achieved another miracle! i actually can see the bottom of our laundry hamper!

i know this is not forever, but i am really enjoying celebrating this moment in time! wahoo! miracles do happen and every minute more that we get to enjoy our lives, is very, very precious!

thank you G-d. xo



we’re going to israel!!!

well, it appears that i may be satisfying at least one of the goals from my list! we will be going to israel for a month! woohoo!! i may be able to piggyback a few more of my dreams from the list on that visit too!

i still don’t know what the results of my latest bone marrow biopsy were, or how far away we are from treatment, but whatever it is.. it can wait. at least 4 weeks. i’m so happy that my husband and daughter get some time away from the hamster wheel that is nyc.

don’t take my sunshine away…

Tonight my daughter couldn’t sleep, and when I got to her room, she grabbed me with her pudgy little hands and pulled me close and said. “Mommy! I was afraid of the dark, so I wanted you here. Because when you are here, you light up the room.” She then stroked my cheek and began to sing.

“You are my sunshine, My only sunshine, You make me happy, when skies are gray. You’ll never know dear, how much I love you. Please don’t take my sunshine away.”

I curled in next to her almost weeping. Maybe she was just being manipulative and avoiding bedtime. But at that moment, I couldn’t stop thinking that within a couple weeks, I would have to tell her that I was sick. And worse, I would have to go into the hospital for nearly a month, for a treatment that would include isolation. We have yet to even spend one night apart.

The only reason that I am fighting cancer, and that I will endure and survive this treatment is for my family. So the idea that I have to be without them is devastating. Even worse, the idea that I could lose parts of them forever if I lose memories due to effects of intensive chemo required for my disease.

I know this disease will impact my quality of life, but it’s more important to me how profoundly those changes will impact my family. My 6-year-old will definitely lose me for 3 months, while I am bedridden. Her Daddy and I will be working hard just to keep things together. I won’t be able to play with her outside. I will miss her special events. She won’t have me to orchestrate her once bustling social life. And by all accounts, I won’t be up to par for at least a year post-treatment. It’s fine that an old lady like me has to suffer through this kind of disease. I’ve lived a great life. But it seems horribly unfair that the rest of her life will be marred by this experience at such a young age, and hereafter, by what is a recurring cancer.

I don’t want my baby to ever feel anything can take her sunshine away. I wish I could preserve her innocence. Her childlike comfort in know that everything will be fine, and mommy will always be here to take care of her. I want to be here, and I’m going to do my best for her and her father, who are the loves of my life.

But I hope this illness doesn’t destroy or consume what’s best in their lives. I hope it doesn’t take me away from her whether I’m alive…or not.

But as my girl said to me tonight. “Even when I’m old, I want to be near you Mommy. Even when we pass away. We can be in heaven together.”

Me too, pumpkin. But I’d rather be here.

it’s like the universe wants my daughter’s room to be a disaster…

mid-reorganization, we have been stricken ill with the flu, pneumonia and a fever. and yes, we get all our shots. of course, it happened right at the point when all my daughter’s stuff is sitting in the middle of her room, looking ripe for someone to drop a match and start the pinkest, fluffiest bonfire ever. thank you, now i’m not only a sick, therefore negligent parent, but her room looks like an episode of kindergarten hoarders. *sigh*

i have not had any infections since i was diagnosed and that is a good thing. sadly, i worry that development will change my diagnosis and treatment…..i also didn’t realize that when i get sick i’m supposed to go to a special urgent care at MSK. oh well, ya live ya learn.

they gave us some scrips and said to stay away from people with germs. ..hahaha. have you MET children?


My goal is to get my daughter’s room in some kind of organized state before I have my big appointment in a couple weeks. I really even need some new furniture solutions. She plays in an entirely new way and has outgrown her toys, her furniture and even the way her room is arranged. When I’m done she will finally have the space and access to things she needs to focus on her art and science projects and fairy land. We even went to the Columbia University library today so she can get ideas for how to organize her many, many books.

Of course, it occurs to me that the purging that is required to make space for Elle’s interests in her room, is similar to the purging that needs to be done in one’s life. At this stage in my life, even though I have purged and minimized my possessions and commitments with every priority and valuable resource in mind, I still find myself in a pile of crap every once and a while.  Whether physically sorting through the endless mail that makes its way into our home with the torrent and force of a paper tsunami,  or psychically finding myself treading in a trough of negativity. We all need to reassess from time to time.

Sometimes, like now, it’s not that our setup is so bad. It’s just that our needs and lives have changed.  The big boxes and cubbies were perfect for the giant toys Elle used to play with, but now the microscopic treasures and craft supplies require a completely different organization. My life is changing too. And it will change even more. After listening to stories about how to process disability papers and not being able to remember your own family’s names after endless infusions of chemo, I realize that certain people may not fit in. Just starting to share the news with some people was enough to send them packing. Farethewell fair weather friends, I say. But worse were the ones who felt compelled to be abusive or withdrawn after sharing the news. Thankfully, I’m a tough old broad and very capable of cutting a cord with little fanfare or drama.

For me, creating some clarity in my home is part of preparing my entire family for this major life change.  And purging our lives of things, ideas or people that block us from living our lives fully, is not so difficult when you can imagine what you are making space for. Freedom, peace of mind and the time and energy to enjoy the people and experiences that truly matter.



f**ckit list

First of all, I hope that I have an indefinite amount of time on this planet. But I’m not so sure any of us should be living as though we do. And, as much as having an incurable cancer changes my perspective, so does coming up on 50 and realizing that childhood is such a fleeting time for my little one as well. I don’t regard this as a bucket list, instead (pardon my french) I call it my f**kit list! I am hoping to prioritize things that on a normal day I might put off in lieu of more “practical” concerns. This happens to coincide with my daughter coming of an age where she is much more independent and eager for adventures. So after years of nesting, now that she’s formally of school age, we are both ready to fly a little. There are infinite things I want to do, but I’ve narrowed it down to a top 15 for 2015 here.

1. Do a special project to celebrate the 15th anniversary of my children’s books “Daddy, You’re My Hero!” and “Mommy, You’re My Hero!”  to further bring attention to the children of my community- military brats.

2. Go to the ocean before my stem cell transplant. After your stem cell transplant you aren’t allowed to go to the ocean or a pool for sometime. There are many people I know who after receiving their SCT continue on treatment that prevents them from going in the ocean for the forseeable future. To me, this is the one of the hugest sacrifices I can imagine since the ocean is my solace, and has always been the place where I am at peace. I don’t see how it’s possible to make this happen right now, but I’m still hoping.

3. Live in a little cottage somewhere for at least 2 weeks but in my fantasies.. 6 months :), where Elle can run free and plant in the ground, explore nature, build things with a hammer and scream and sing to her hearts delight without being admonished by any nearby adults. And her Daddy can putter around and and rock in a chair in his natural state of calm. This seems like an impossible dream right now. But it is definitely up there on my wishlist.

4. Visit family in Israel before my SCT. SCT might prevent me from being able to travel internationally for sometime. Even when I am able, I might be limited in what I can do. Especially on such a long flight. Maybe 3 & 4 should be merged together. We all need to see our Saba and Safta and brother Jei and aunts and uncles and 25 cousins, most of all Daddy and Elle, to feel some family love before embarking on this journey.

5. Elle is fascinated with the job Mommy had in the music business before I quit to focus on family. She has a dream that she can be with Mommy backstage at a concert like I used to do. I would love her to have a memory of Mommy in a more vibrant setting before I am in the hospital for weeks.

6. A romantic night with the hubby before our 20th anniversary. We don’t really have the chance for time alone. We don’t have family in NYC. And we are a very family-focused couple, and lord knows, we LOVE our baby. But what I wouldn’t give for a night alone with the hubby before I go into the hospital. This might be my most impossible wish, because it’s one I can’t make happen on my own.

7. Disney World. Yeah. So predictable. But Disney is our happy place and we all love it there so much. It makes the world seem tolerable.

8. Converting my “Rock Hard Times” screenplay into a novel. I really haven’t had the time to look at it since I won that AIVF thing, but I think it would be great as a novel.

9. Putting my photos and videos into some kind of cohesive presentation by my 50th birthday :) That would be the best present ever to myself!

10. Produce the music video I have been thinking about to raise awareness for Multiple Myeloma Research.

11. Do a photo shoot of me and the family before I’m on steroids and chemo everyday for the rest of my life :) Not to mention, before I need to start coloring the gray out of my hair!

12. Find someone who can help me with Elle while I am not well enough to chase around a 6 year old!

13. For my husband to be able to take some time off to spend with us.

14. A big night out with music and friends for my 50th!

15. Plan and participate in my daughter’s batmitzvah!

too much? :)