Silicon Valley Moms Blog

Going Green from a Sicko Healthcare System

I am green today.  Not green with envy, ecological awareness or holiday greetings. I am green with sickness, the nauseating disease that is now called our health care system.  Note the "care" in the compound word health care.  Note the hypocrisy of this word in the United States of Sick America.  How many are not cared for where we live?  Millions?  How many are denied care because they actually need it?  Millions more.  You've heard the speeches.  You know the political health care babble.  So let me cut to the sick thick of my family drama.

I was laid off from my job two months ago.  Our company then filed for bankruptcy, so Cobra was not an option.

Silicon Valley Moms Blog hosting a BONE MARROW DRIVE - April 19th ... Please help us spread the word!

This was originally posted on Silicon Valley Moms Blog on 3/19/08.  We are reposting and asking that you help us spread the word about the Marrow Drive! If you have linked to this post, can you please leave a comment below so we can "thank you" (and please provide a link to your post)!

I have become an expert on Leukemia.  Since my mom was diagnosed with AML in December 2007, I can rattle off all the different types of Leukemia; AML, CML, CLL, ALL ... I can chat about the different subtypes.  I can tell you about induction chemotherapy, consolidation chemotherapy and now bone marrow transplants. Do I get a prize for my three month crash course into this terrible disease?  Actually, I hope that my gift is a healthy mother who will be alive for many years to come.  I pray that she will sail through the next few months of consolidation chemotherapy, and a mini bone marrow transplant.  I pray that she will survive and begin her "new" life..... leukemic free.

These past few months we have been on an emotional roller coaster of chemotherapy and getting Mom into remission.  I must admit, I have felt helpless as we waited day to day to see if her body would show no signs of leukemic blasts in her peripheral blood and marrow.  I stood by helplessly, as another bone marrow biopsy was done.  I stood by the side, as they told us that leukemic cells were still in her marrow or peripheral blood. I stood by as we learned that my Uncle is NOT a bone marrow match. I stood by as they FINALLY said that it "looks like Mom is in remission". But here is the reality: My "being there" made no difference if the chemotherapy worked, or not. For me, this was the hardest... not being able to do anything to make the situation better. My being there did not mean a cure or remission. I just had to sit there, be positive.  Be supportive. 

So now that my mother is FINALLY "in remission" and the doctors believe that a bone marrow donor will be identified, I wanted to do something in Silicon Valley that can make a difference for other families going through the awful diagnosis of leukemia.  To be clear, this will not directly benefit my Mother, who has already been matched with a donor.  However, for many other patients, long term remission (or a cure) will depend on a bone marrow transplant.  So....the only "productive" thing I could think of was to hold a MARROW DRIVE, in honor (NOT MEMORY) of my mother, who will receive a transplant in May 2008.  With the help of many friends (a huge thank you to Enoch Choi), family members and PAMP, I am pleading with the Silicon Valley Community to become a marrow donor by participating in our drive.  Please come out and support our efforts... please allow the National Marrow Donor Program (NMDP) to take a swab of your saliva. (For those of you who are scared, this is NOT a blood test.  No needles are involved that day!) Please agree that if you are ever contacted by the National Marrow Donor Program (NMDP), you will agree to donate a piece of your marrow.  You can help give the gift of life....

• Date:  Saturday, April 19, 2008
• Location:  95 Crescent Drive, Palo Alto, CA  94301 (right near highway 101)
• Time:  9:00am to 3:30pm
• To be eligible to donate, you must be between the ages of 18 to 60.

When I was at Stanford Hospital visiting my mother, I met MANY leukemic patients who were desperately waiting to find a bone marrow match.  Most of these patients were of mixed or minority races, especially Asian, Hispanic, African American, Indian, Asia Pacific and American Indian ethnicities.  So to these groups, I am making an extra plea.... Please help us spread the word......

Respectfully, Jill Asher (Co-Founder of Silicon Valley Moms Blog)

Here is more information about the National Marrow Donor Program:

San Jose colleges have banned discriminatory blood drives

Three San Jose colleges have suspended on-campus blood drives as a stand against the federal ban on allowing gay males to donate blood. According to the SJSU President, the federal ban is in direct conflict with the university’s policy prohibiting discrimination. 

The ban on donation from gay men has been around since 1983, when AIDS first emerged in the United States.  Many campuses have protested the ban on donations from gay men, but this is the first time an administration has taken such a drastic action against it. Of course, students could go elsewhere to donate blood, but campus blood drives can be essential to a community's blood supply. According to some statistics I’ve heard, 16 to 20 percent of blood comes from college-aged donors.

It's important to consider, though, that all donated blood is screened for HIV anyway.  And that the new cases of HIV are on the rise in other groups as well.

RECAP! Coping With Illness While Caring For Family

RECAP!

We are the sandwich generation.  It's not that we have a great affinity for peanut butter and jelly, although our kids do, but we are the generation that will probably be simultaneously caring for our parents and our children.

We were older than our parents were when we started our families.  As a consequence, many of us have small children and parents with health problems.  Some of us may even be coping with health problems of our own.

So how do we balance all of this caretaking with our own personal needs and goals?  How do we retain our identities as women, not just mothers and daughters, when the stresses of a serious or chronic health condition are added to the already overloaded burdens we carry?  The women of the Silicon Valley, Chicago, New York, and D.C. Metro Moms Blogs discussed this very issue.

Silicon Valley Moms Blog

• Coping With Chronic Pain - Two Years And Counting
• Kids With Disorders - Moms In The Closet
• They Won't Be Around Forever......
• Life With Diabetes Age 11, 9 Months
• What We Don't Talk About
• 222 Potential Bone Marrow Donors
• Looking For Zebras
• The Long-Term Legacy Of Illness
• Little Boys To The Rescue

DC Metro Moms Blog

• When Mom Is Sick, Everything Changes
• How Do You Ever Cope When It's Mom?
• I'm Not So Different
• Is A Condition An Illness?

Chicago Moms Blog

• Doctor Recommended Costco
• Coping With The Unknown
• Giving Medicine To A Stubborn Child
• When The Mama Cat Comes Out

New York City Moms Blog

• LAM - A Little Known Disease
• Sandwich Generation

Coping With Chronic Pain - Two Years And Counting...

I finally got to writing this post at the end of our topic day because - well - I spend so much time on various forms of coping, one of which is a deeply ingrained talent for keeping too busy. Actually things are much, much better for me in terms of my health and the chronic pain. (I usually don't repeat adjectives, but really, they're a lot better.) So I can't complain and I'll try not to make this sound like it, but your life changes when you suffer from severe injuries. Gradually, as you realize you may never be the person you once were, your perspective becomes altered.

I count myself lucky I'm not battling cancer or some terminal disease. I feel blessed I'm not paralyzed or an amputee. In fact, most people would never know I'm not in top health. And I try really hard to keep it from them, because that's part of coping. It's a twisted society we live in, in some sense, but many people really don't want to know when you have a long-term health problem because they themselves don't know how to deal with it. So part of coping when you're in the thick of things is actually to come up with ways to help them cope. Which is one reason it's difficult to write about it.

Kids With Disorders - Moms In The Closet

One of the most touching things I have read in the blogosphere has been personal experiences and recommendations for parents coping with kids that have a range of disorders. These brave parents that share their experiences online help others gain strength and inspiration, and not feel so alone. But I feel sad that many parents don't feel comfortable sharing their experiences because of other parents at their schools that "label" kids with disorders.... All I can say to those labeller parents is "grow up!".

Parents of kids with learning disabilities or spectrum disorders cope by forming word of mouth groups to share information within that group. But it may be hard to find these groups in schools - so many parents struggle in isolation. Some may meet up at seminars on related topics, but would never see any information published in a school newsletter. There is a wide range of disorders that may effect children's ability to function in class. Some may be top of the class academically - but struggle to write. Some may be top athletes who can't read. Some may have spectrum disorders or learning disabilities.  And some may have a disorder that leave them being labeled as a quirky, maybe out of control kid but end up being incredibly successful adults. In Silicon Valley they coined it "Geek Syndrome" and this Wired Magazine article had some interesting points to make:

Life with Diabetes Age 11 Years, 9 Months

My younger daughter has Type 1 Diabetes, also known as Juvenile Diabetes.

She's almost 12 now, she was diagnosed when she was 5.  I remember we knew she was sick, but thought it might be something psychological or maybe thyroid-related.  She was thin with a bloated belly, very clingy and cold, thirsty and peeing a lot.  When we went to the pediatrician, we were in the waiting room and she had to go to the bathroom.  I asked the nurse for a cup and she said "why- she's not here for a urinary tract infection, is she".  I just said I had a feeling it would be something they were going to ask for and she relented.  Of course they then knew right away.

What We Don't Talk About

My Dad's side of the family is not what anyone would call quiet, nope - we are not shy, we are loud, we are funny and we do like to have a good time.  We are not a quiet bunch, the family reunions are loud, birthday parties are loud, holidays are louder, heck even our funerals are quite chatty.  And to add insult to injury, there are a lot of us - My father has 5 siblings, there are 11 grandchildren, add the 8 spouses, 13 great grandchildren....that is a lot of talking, a lot of laughing and a lot of noise.  We are spread out all over the country - sadly, we are not all local.  And if you must ask, when we do get together, yes we talk usually talk over each other, we are sarcastic, and we torment and tease each other mercifully.  I am not proud of it, but we have scared a few possible boyfriends away due to our....um extremely loud voices and ability to tease outsiders. 

Now, yes we do like to talk, but there are some topics we tend to shy away from.  We always knew there would come a day when we had to have the talk, this was not a conversation any of us wanted to have.  If we talked about it, we would actually have to acknowledge how bad things had gotten.  The entire family always knew that it was not going to be easy, we emailed each other, we discussed on phone calls across the country and we whispered about this very topic at many a family events.   

222 Potential Bone Marrow Donors

If you would have told me a few years ago that my step mother would be diagnosed with Alzheimer's and that my mother would get AML Leukemia, I would have told you that you were smoking some serious crack.  They are both young.  They are both healthy.  Alzheimers and Leukemia are diseases that would inflict pain on another family, no ours.  Doesn't it always happen to someone else?

I could be bitter about our situation.  Actually, there are days that I think God has played some cruel trick on our family.  My mind wanders and i think that maybe our family was just doomed to have to deal with such sadness, emotional torture and grief.  But then there are other days, like yesterday... when we received some very, VERY good news.  Ah yes, maybe (just maybe) the tides have turned and a sense of hopefulness can surround our family.

The National Marrow Registry has identified 222 potential bone marrow donors for my Mom.  What does this mean?  One of these 222 angels will probably save my moms life, by donating marrow.  So to them, I write this note of gratitude....

Looking for zebras

There’s a phrase in the medical profession (I either read it in a novel or heard it on a TV show, and it stuck in my mind): “when you hear hoofbeats, don’t look for zebras”  That is, most of the time, in medicine, symptoms are caused by the most common illness, not the rare one.

Except in our family. For a while, we were living in zebra territory. And since then, I’m always looking for zebras.

There was my daughter’s Saturday morning stomachache. A really bad stomachache. I took her to the doctor at around 11 a.m. even though my husband, who knows I definitely have a tendency to jump to extreme conclusions, reassured me there was no way she had appendicitis. The doctor agreed with him—stomach virus coming on, she’d probably get diarrhea or some such soon, call, of course, if it gets worse. I took her home. It got worse. An hour later I put her back in the car and went back to the doctor, calling for the appointment