Keep calm and...

Well, it's been over a month now, so I guess that New Year's Resolution didn't last long - mea culpa! Here is the latest update, and then a few words from the heart.

Jenelle finally got her repaired wheelchair back a week ago, and the same abductor is tearing again. She has really kept us on our toes of late with mic-key button replacements and seizures. In fact, the same button we replaced a week and a half ago had to be replaced this morning. I hope this doesn't turn into a new trend. She is happy though, and loves baseball right now.

I'm doing well - had another follow up at UCLA this week. My blood work still shows the effects from chemotherapy 6 months ago, but my energy level is much improved and of course, cancer tests are still clear. The new "less carb" diet is going well and I've officially lost 10 pounds. I re-test my blood work in a few weeks to make sure we're going in the right direction.

So, now it's time for something I rarely do - show my fragile side. Mentally, emotionally ... in all honesty... I'm hanging on by a thread these days. Bear with me...

I'm constantly complimented on my ability to be so up beat and positive. Well, I'm been taking an anti-depressant since February 2009. Shortly after I freaked out in the hospital when I was there with no neutrophils, but feeling "fine". I was depressed, and the pills were a savior. But lately I have to wonder if these happy pills aren't doing me wrong. If they aren't making me feel invincible when really all I need is a good cry. Yet the tears won't come because my happy pills won't let them. I'm sure that opens up a can of worms I really don't care to debate right now, but anyway...

Being honest here, I have to say that these past few months, I've just been going through the motions of daily life. Keeping that stiff upper lip and carrying on with the illusion that the sun will come out tomorrow, and that my life isn't all that bad as it sounds. Never giving up. Things can only get better. Yada, yada, yada. When in reality I want to cry, scream and just say enough is enough. When does it end? When do I get a break in life? When will I win the lottery? When can I be selfish for once and not care for my responsibilities in life?

And as I feel like this, like I've had enough putting up with crap and I think I'm allowed to be human and I'm long overdue for that break down that I deserve; I get an email from a friend from high school - thanking me for my optimism and telling me that I've been an inspiration to her during difficult times. Then an hour later, I get a text from a friend I haven't seen in a while, telling me she thinks and prays for me daily. And then it hits me... I keep it together, because all of you would accept nothing less from me. I'm a survivor, an optimist, an inspiration, but yet so very human.

Three years later, my cancer is still affecting our family. I'm well now, but the worry, the depression, and all the work we still have to do to get back to the way things used to be before the cancer are still present. We still fight it daily, and we are barely surviving.

I know that no one would ever tell me that I haven't made an effort. That with Jenelle, and my cancer, and the recession and recovery that we are all facing - no one would blame me or be surprised if I just gave up and moved on (in life, not as in exiting this world.) The odds have always been against us from the beginning. Most people only face one of these events in their life and/or marriage - surely the fact that we've made it this far means we've done well, right?



I am human. I fear that every day is the day Jenelle begins to regress, or worse, her last. With every bruise and ache or pain, I worry that my cancer has returned. Everyday I check the mail to see if I've been paid, and then I worry if that money will be enough to pay a bill, or the rent. I worry that my happy pills are just blurring my reality just enough to convince me that things are improving when really they aren't. I pray each morning my car will start. This is my reality.

As a Christian, I have faith that God has purpose for me, for my family, and that certainly this has to suffice. I see myself as a modern day citizen of the second Great Depression; that surely I'm not the only one suffering in this day and age because of our economy and the rules of our society. I sometimes wonder if the "end of days" as the Mayans predict in December 2012 wouldn't necessarily be a bad thing. I guess I'm just human... waiting for some miracle, or some extraordinary event to shake things up in my life.

So, that is where I am emotionally. Putting it all out there for the world to see. Letting you know, that I'm no saint. Thank you for letting me vent here. This blog has been so therapeutic, and I know I haven't lost all hope. When I'm feeling so down, I think of all of you. Those who find inspiration in my life experience, and those who reach out to tell me. I'm human too, and sometimes that little reminder that you hesitate to send to me is exactly what I need to survive the day.

Thank you for the continued prayers. I promise, I'll keep you posted.

Wheelchair Repair

Last Thursday, Jenelle's "brand new" wheelchair broke. It's not as bad as it sounds, but she is unable to use it until it gets fixed... thank goodness we still have her old one. OK, let's see who knows what an "abductor" is? Anyone? Well, and abductor is the little strap that is the "fifth point" of a 5 point harness (i.e. between the crotch.)


So, we're talking the strap that keeps Jenelle from sliding out of her seat belt in her chair came apart. Yes, somewhat minor, but important if you know our Jenelle. In all honesty, it didn't look like it was sewn in all that well when I got it, so it didn't surprise me.


Yesterday morning, I met with a repair guy at National Seating and Mobility. He was shocked. In all his years working with Convaid (the makers of Jenelle's wheelchair), he has never had to process a warranty repair. That says a lot for the quality of Convaid; an honestly, her last chair held up longer than we ever imagined, and it was a Convaid too! He took photos, and made a report and spoke to Convaid. It may take a few weeks, but they are going to replace the seat. Luckily, Convaid is headquartered here in Southern California, so we're hoping it won't take too long!


Her bus driver suggested taking it to a shoe repair, because really all it needs is for the abductor strap to be "re-sewn" into her seat. Not a bad suggestion, but of course, that would void the warranty. We'll just stick with Convaid.


Keep up the positive thoughts that we get a repair soon!

Almost made it!

One post per week per my New Year's Resolution. I consider weeks to start Sunday, end Saturday. Well, I almost made it, but I think the "two posts in one week" should grant me some leeway. So, I missed it by two days, we all have faults! ;)

Jenelle had her first seizure of the year on January 14, and another seizure last Tuesday, the 24th. That seizure happened at the end of the school day in her class room. A grand mal lasting 2 minutes, 40 seconds. No need for Diastat, and she slept most of the evening. Hoping this doesn't start a trend.

Jenelle has a new one on one aide at her YMCA after-school program. Last Friday, her former one on one aide came to visit and she was just ecstatic to see her. I love it when Jenelle shows familiarity with people. On Saturday, she and I attended her "year end" party for the Tustin Cobra Challenger Cheer girls. She was just thrilled to see the girls again, and it was fun to watch them do their hair, do their nails and dance to fun music. The cheer leading was such a fantastic experience, and we can't wait to do it again next year!

I'm doing well so far on my new diet to help me lower the triglycerides and lose some weight. The first week was pretty tough; I had headaches I think from sugar withdrawals. However, in that first week, I also lost 3.2 pounds! The second week was much better. The headaches were gone, and I felt like I was fuller at meals, and had more energy. Isn't is amazing that what we eat can affect us so much. The second week I gained back a few ounces, and added some more exercises. Starting into my third week now and I am maintaining a total loss of 2.3 pounds. Pretty good so far, even though I cheated a bit this weekend and ate some candy from the pinata at a birthday party this weekend. :(

That is all for now - we are getting pretty busy with baseball tournaments the next three weeks, and gearing up for Little League. It's beginning to look a lot like Spring! Thanks for continued thoughts and prayers. I'll keep you posted.

Who decides the meaning of "Quality of Life?"

A few days ago, I noticed on Facebook that friends were sharing a blog post about a child with mental and physical disabilities who was being denied a life-saving kidney transplant. Many were "out-raged" because on the surface it reads that a child was denied a transplant solely because she is "mentally retarded". I was busy at the time I saw the post, and didn't bother to read about it beause I thought to myself, "there is always more to the story."

At lunch today I noticed the same story had gained national attention, and was being reported on by ABC News. I read the article and remained unimpressed - there has to be more to the story. So I went to the Mother's blog, and read with teary eyes their story. And when I got to the end of it, I felt there had to be more. I looked briefly for some history on the child, perhaps a personal blog or website where the Mother was disclosing health information, but found nothing. All we are left with is her story of a horrific experience, and medical information and statistics on the child's diagnosis. In her story, the mother eludes to "Hepatits C", and "HIV"; but there is no discussion as to why those words are relavant to the hospital's decision in this matter.

Now, I would be the very first person to stand up and scream and shout that NO ONE - EVER, EVER, EVER, no one should EVER be discriminated against or denied medical treatment because they are "mentally retarded!" Just two days ago, I posted my hope that one day Jenelle be judged on the content of her character, and not by her disability. And I do personally believe that the Special Needs community (which is very vast and inclusive of many different types of disabilities) is probably still one of the most discriminated against communities in the world. Yet, even though I agree strongly with all of that - I find myself feeling sorry for this particular family.

Their daughter is only 3 years old, so this "special needs" way of life is still new to them. They can't possibly know, or understand what the doctors are warning against because they are too emotionally involved. The Mother even quotes the Social Worker and the Doctor's warnings of the dangerous side effects to a normal child, let alone a child with her disabilities. And the many medications she will need along with the long term care and attention. They are trying to make the family understand "quality of life," and all the Mother hears and knows is that her child is "developmentally delayed" and thus entitled to her right to live.

I'm not saying this Mother is wrong, but as with anything, experience tends to make me somewhat jaded. Each Special Needs Child is different, and wonderful, and complicated in so many ways. Each brings joy to the lives of their Mother and Father - there is no questioning that. But just because we have the science and ability to prolong the enivetable for our Special Needs Children, does it mean we should?

It goes back to the definition of "quality of life", and who decides the meaning of it. Yes, I realize I've just opened a big ole can of worms. That I'm the minority. In fact, I realzie I'm being very matter of fact about as decision that is as unique as each indiviual on the planet. However, the issue of "quality of life" has become very personal to me in recent years. I think of Jenelle's quality of life, Brett's quality of life, Jack's quality of life, MY quality of life, my Parents' quality of life, my Niece's quality of life, and it goes on...and yet there are so many different interpretations of the meaning.

So who decides? Who determines "quality of life?" I honestly don't know the answer. It changes with each possibility, and each circumstance, and for each individual person. I do hope that when I have to make that choice for myself or my family that the choice is easy for me. But we can't all be that lucky.

Back to the "discrimination" issue; is this child being discriminated against? I don't think so, because there is always more to the story. Is it sad? Yes. Do I feel horribly for the family? Absolutely. Are the doctors right on this one? Possibly. Again, there is always more to the story.

Jinx...

Jenelle had her first seizure of the year on Saturday night lasting a little under a minute. Oh well, not a bad run for the first 14 days of the year!

All about Mommy!

Second week into the new year, and a second update! I'm on a roll!

First, a report on our little girl:

I type this very, very hesitantly... and am knocking on all wood products I can find ... but I'm pleased to say that Jenelle has not had a seizure since Christmas morning LAST YEAR! Hopefully this is the year we can officially say Jenelle's new year's resolution is to quit having seizures. We can only hope!

Now, it's all about Mommy! I have a few things to report and had a follow up yesterday at UCLA. The good news, as always, I'm still cancer free! Now, the not so fun news... at least not so fun for me.

At the end of December, I saw my general doctor. Because I've been off chemo since August, it was a good time to re-do some routine labs to check my thyroid function, cholesterol levels, etc. We had done this back in June, but because of the chemo drugs, the numbers were quite skewed. So, during the week after Christmas, I had some fasting blood work done and the results were not so fun; apparently my triglycerides are very, very high. My general doctor told me to lay off the carbs and exercise and we'd re-test in 3 months. I took the labs to UCLA yesterday, and they suggested I start medication right away.

If you've known me since at least high school, you will also know that I've never, ever had to diet in my life. I've always had a very high metabolism, and I've always been very thin. Oh yeah, and the exercise part... well I don't get much exercise aside from taking the stairs in the parking garage at work.

My Father has Type Two Diabetes, so I've been worried for a while that I might follow that path. It doesn't help that I love carbs and sugary sweets. However, since my cancer, I have steadily gained weight. Some survivors tell me this is the little know secret they don't tell you about chemo and cancer - that ultimately you gain weight. However, everything I've done hasn't been helping, but I'm tired of see the number on the scale that I saw when I was pregnant with Jack! The signs are all there.

Getting old totally sucks! So does going through cancer.

However, in the last 10 years, I've gained a lot of perspective about taking medications. If your child has seizures - take medication. If your child has ADHD - take medication when necessary (i.e. during school.) If you have cancer - definitely take the medication. If you think you are getting sick - hold off on medication until it's an infection - then take the medication. With all my body has been through and all that I've survived, why just agree to simply "take a pill" when I could try to make a decent effort to change my habits? I really sort of owe it to myself, and my body since I do have this second chance at life thing going for me.

I did a lot of reading and Internet research, and learned that my diet will drastically change. Leaner meats, more fish, no sugars, limited alcohol, lots of greens, whole grains and no carbs. Thank God we have a Trader Joe's just around the corner! I started this new diet on Wednesday, and I still get temped to cheat - especially the sugar (like Sweet Tarts and such.) But I think at the very least before surrendering to medication, I owe this to myself. It's worth a try, so wish me luck!

Thank you all for the continued thoughts, support and prayers. We'll keep you posted!

(Knock Knock Knock on wood!) ;)

A New Year Means New Resolutions and New Habits

Happy New Year!

Being the "A type" personality, obsessive compulsive, superstitious type person that I am, making and trying to keep New Year's Resolutions really appeal to me. Of course, I never really end up keeping them, but sometimes making yourself a promise to change something in your life is never really a bad thing. One of my New Year's Resolutions for 2012 is to update this blog more frequently, even if there is nothing to say. My goal is at least one update a week.

Here are some of my other "resolutions" for 2012:

• Attempt something new each month



• Be more punctual (so far, so good, but this one will fade fast I'm sure)



• Better Proof-reading of drafts (per my boss's request - this one will take for sure! ;)



• Strive for healthier habits and more exercise

Not much, but just some things to strive for to better myself. As for the proof reading, that has always been difficult for me. I'd like to blame it on some sort of disability that makes it impossible for my eye to see errors, but alas the real problem is that I'm convinced that I'm perfect the first time. And sometimes I'm just so busy, I just want to get one thing off my desk so I can start another. And sometimes I just lazy.

Jack announced this morning that he has decided on a Resolution for 2012. He is going to brush his teeth every day! This has been problematic for him since the broken tooth the Saturday after Thanksgiving. Yesterday, the oral surgeon removed JD's brace holding in his broken tooth. The front tooth is dead, and will require root canal, but the other is fine, so no extraction or bridge. Great news. I told Jack that another "Resolution" he could make would be to not throw the Playstation and Wii remotes. Here's hoping he keeps both Resolutions. As for Brett simply wants to be able to say on December 31, 2012 that "This year could not have been better!" And of course, Jenelle wants "no seizures". So far, so good (knock wood!)

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Brett jokes all the time that he should have put a trade mark on the term KCA. Cancer really sucks, and it hits so close to home for me whenever I hear about it. While we all have a good laugh in "Kicking Cancer's Ass", at times it has not been something I want to tell a young child. Sometimes I say KCB, for "Kick Cancer's Butt!", but for me, KCA is the only mantra.

In September, I learned about a 12 year old girl in my area fighting brain cancer. Reading her updates on Facebook always made me smile because I could see that she had the right attitude to beat it. Her motto - NEGU, or "Never Ever Give Up!" Jessie Rees died yesterday after her long fight to "never ever give up" fighting brain cancer. She was a joy and inspiration to so many, and before the day ended she finally met her goal of getting 50,000 Facebook fans. God Bless you Jessie, and thank you for inspiring other children fighting cancer.

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Finally, some photos from Christmas Eve that I promised: