Wednesday, June 20, 2007

Soapbox

I'm mad, disappointed and not surprised. I hemmed and hawed about posting this in my blog because my blog is MOSTLY about knitting and travel but those of you that follow my life, sometimes it veers off into the more personal.

Beware: This entry is a very personal one and it contains my OPINION!

President Bush just vetoed a bill aimed at at promoting stem cell research.

Until a person has walked in the shoes of another, please do not judge.

I know with this post I'm going to be putting myself out there - on a narrow ledge in full view of others and doing so with purposeful intention.

My hope is that with this post, someone will hear this plea.

In general, I'm a very "out there" person. I'm not the type of person to hide things from people or NOT share my life experiences with people. Life is about learning, isn't it? At least this is how I view life.


Some people may stop reading my blog after this but I'm willing to take the chance in hopes that this post may affect people - maybe even motivate some to take action.

In my last post, one of the random things I wrote about was that I was an egg donor with the use of fertility drugs. I made this decision deliberately and with MUCH consideration. I struggled with it. I fought with it and I finally made peace with it.

This will be a long post so please bear with me(that is if you want to read it all).

Where do I start?

It all started with a leukemia diagnosis. My niece, Nicole, was diagnosed with leukemia. A rare type for children. She was 5 years old at the time. Her only *cure* was, and still is, a bone marrow transplant. We held numerous bone marrow drives, we pleaded with TV stations to run her story. It was picked up by national news agencies but people still did not/do not sign up for the bone marrow registry! The sight of the needles were just too much for people. Now they can do the tissue typing with a saliva swab. No more needles.

Every member of our family all got tested to determine whether any of us were bone marrow matches for her. None of us were.

My sister and her husband hooked up with a California geneticist that could determine, after 8 cell splits, whether an embryo would be a match for Nicole. This man, with the help of technology, could assist in bringing a child into the world that would be a perfect tissue typing match for Nicole, a life saving match.

My sister and her husband tried this fertility routine a couple of times. It is very, very costly. The last time they tried was in few days before 911. She was on fertility drugs and the timing of implantation needed to be timed exactly. Any of you that have undergone any type of fertility treatments know that fruition/maturation of the eggs is very important. Right at the time of the 911 disaster, Rob was scheduled to go down to California for his part of the fertility routine. Trish was already down there with her maturing eggs! Because all the flights were grounded and cancelled due to the twin tower disaster, this hampered their efforts. They had to go down to California because the technique of determining if the embryo cells were a match for Nicole was not being done in Seattle. Eventually by working with this geneticist, they were able to do the techniques from Seattle.

So, the story continues. My sister Trish is 3 years older than I am. Through the bone marrow tissue typing we all went through, we discovered that Trish and I were bone marrow matches for each other.

The biggest issue my sister faced was that her eggs were getting old. This was causing problems with getting the embryo to split and many were not developing because of the condition of her eggs(scrambled perhaps? Ok, bad joke).

Being an analytical person I thought - "I wonder....if we are bone marrow matches for each other, maybe she could use my eggs since they are 3 years younger?". In working with many agencies to confirm whether this could work, it was determined my eggs could be used. That means that a child created from my genetics, along with her husbands, could create a child that would be a bone marrow match for Nicole.

Now I had some HUGE issues with going forward with this.

Essentially I would be having a child with my brother-in-law. This was VERY hard for me because I'd always wanted to have children of my own. I had met a wonderful man, my soul mate Greg, who was 14 years older and he was past the point in life of having, and raising, children. Having children of our own was not an option.

I was haunted by this decision because I so wanted to have children. I agreed to marry Greg knowing he did not want children. I had lived enough life to know that having this kind of loving connection with another person is a rare thing. I gave up having children for Greg.

Now with this scenario, how would I deal with seeing a child raised by my sister and brother in law that was half me and not raise it? How would I deal with seeing this child? How much grieving would I experience. How hard, emotionally, would this be for me?

I knew in my heart that if this could save Nicole, I needed to do everything in my own power to save her. If I didn't do this I knew I would regret it for the rest of my life. If she died, I would feel like I was somehow responsible if I didn't try this option.

All of this work in genetics had allowed us to be able to determine after an embryo cell splits 8 times, whether it would be a life saving match for Nicole.

Do you know how hard going through fertility treatment is? You have to get shots in your butt and in your stomach everyday. No, twice a day. Near the end when your eggs are maturing, you have to go in for vaginal ultrasounds EVERYDAY! Everyday I walked up to "pill hill" from work for those ultrasounds, dreading every step, but I just kept thinking that my efforts could save Nicole.

In my early 20's I had to have one ovary removed. I had endometriosis. So I only had 1/2 the number of potential eggs in a cycle than a normal two ovaried person.

Long story short. My eggs were old too.

I was going through all of this right after Greg and I got married. We did it the few months between our wedding day and our honeymoon. We waited a few months after the wedding before going on a honeymoon and this was what we did in-between!

Greg had to deal with this emotional wife caused by all the fertility drugs! He was a saint. Not only did he have to deal with me and my mood swings, he had to give me all the shots! The ones in the stomach were especially painful. He hated giving me the shots because he knew it was hurting me. He did all of this because he knew it could save Nicole's life.

It was a very disappointing result. I only got 8 eggs extracted and some embryos were not even viable. None were matches for Nicole. The odds were 25% of the viable, fertilized eggs would be a match.

I remember walking into the doctor's office after we knew the results were back. Trish had to take fertility drugs also to prepare her body for implanting the fertilized egg. We knew there was bad news when we walked into the office. The nurses would not even look us in the eye.

We cried....and cried and cried some more. One doctor came in and asked us if we wanted some help. I knew he worked in fertility and must have had experience dealing with disappointed wanna-be parents but it sure didn't feel like it. His "bedside manner" left a lot to be desired. It was like he did not understand why were SO upset. We were trying to save Trish's daughter and my niece's life and it was not going to happen. Uh, you think that might be upsetting? DOH! Get a CLUE!

We eventually pulled ourselves together and walked out of the medical building in a daze.

Why am I on a soapbox?

Stem cell research could help cure diseases like leukemia and Bush just vetoed a bill for stem cell research.

I just love these quotes by Bush and his logic.

"America is a nation founded on the principle that all human life is sacred. And our conscience calls us to pursue the possibilities of science in a manner that respects human dignity and upholds our moral values," Bush said.

"Destroying human life in the hopes of saving human life is not ethical. And it is not the only option before us,'' the president said.

By preventing the funding of stem cell research they are basically putting the nail in so many people's coffins. Many of these people are living through debilitating illnesses that may one day be cured based on the research done with stem cells. Is that valuing these people's lives?

There is even new research shows it might be possible to create embryonic stem cells without destroying embryos. Many of the embryos used in research are those that have been discarded by people undergoing in-vitro fertilization. I recall signing a release that the embryo's created but not used for implantation could be used for research. Some of my embryo's might have been used for research.

Embryo's that are created during the fertility process but not used for research are usually destroyed.

So will Bush and his buddies be introducing legislation outlawing fertility treatments because the unused embryo's should not be destroyed? What does he plan on doing with these embryo's that currently are being destroyed? He says the issue is that one life should not be exchanged for another but they are being destroyed now anyway. So where does that logic lead? Nowhere, in my opinion. If he truly disagreed with the destruction of these embryos, he should introduce legislation that prevent the destruction of these embryos. If he did do something crazy like that, what would he do with all of them? Would he use federal funds to keep all those embryo's not used during in-vitro, viable? I guess he hasn't thought about that. Maybe he hasn't continued thinking through that line of reasoning.

Shouldn't these embryos that are now being destoyed be used for something valuable like research on how to cure diseases and save lives?

They KNOW stem cell research will help find cures for diseases.

The spin doctors do not title his action: "Bush vetoes funding for life saving research"

Well basically that is what Bush just did.

6 comments:

Diane said...

I'm sorry for the pain your family has suffered - my aunt died of leukemia as a young mother many years ago. I don't know if there was any hope at the time of doing transplants. She passed away over 20 years ago.

Cancer is an evil, evil stealer of life. My father in law was taken by lung cancer. I don't know of many families who haven't been touched.

I pray that a doner is found for your niece. I also hope that work with adult stem cells moves forward quickly to the point that embryonic stem cell research will no longer need to be pursued.

Gail said...

What a heartbreaking story. I already cried once today, but I'm crying again on reading this. What suffering and loss. And it is all based on lies and public ignorance.

Stem cells are blastocysts: *undifferentiated cell masses capable of evolving into any organ*---which is why they are so valuable for research. They are produced en masse in fertility clinics around the world, and most of them are destroyed. (Why is THAT not being addressed by our President, hmmm?) In the normal course of events, women routinely lose blastocysts without even realizing they carried fertilized eggs. Yet no one is proposing we "save" those lost clumps of undifferentiated cells.

OTOH, an embryo is a product of conception *that has attached to the uterine wall*. It is a misnomer to call this issue "embryonic stem cell research". Don't fall for it! It makes no scientific sense. No one is scraping embryos off of uterine walls for this research! (No wonder freshman biology students the world over fall on the floor laughing every time this issue hits the news.)

What is so disconcerting is that our understanding and ability to think logically is so low in our society that such a fool as our President, in his ignorance and arrogance, can gain so much power, cause so much harm, and crush so much hope.

I hope there is one person out there who reads what you've shared, and pauses to think about the consequences of his/her vote.

A big hug for you and your family, Naomi. Thank you for sharing your pain and loss.

Naomi said...

Gail. I so appreciate your scientific background. Your information is very helpful to me. I had forgotten they are termed blastocysts. As I was writing I was like.."I know they are called something else" but didn't go look it up.

I hope the tears were healing and cleansing for you. I know you are going through your own heartache right now. I feel for you!

The only reason I share on the blog to this level is exactly the sentiment of your comment - for people to consider carefully who they vote for as well as provide a personal viewpoint based on a very personal experience on a societal issue.

The president has wide ranging power to affect so many issues and people- from the environment, to health issues to the safety of people all over the world and so much more. What checkbox you choose should be considered very carefully, indeed.

amy said...

i was disappointed to hear he had vetoed again. with 65% of the country supporting stem cell research it is infuriating that we don't have a president who listens.

my grandmother suffered from alzheimers for nearly 10 years. it was a long and painful journey watching her slip away and one that i will never fully recover from. it is too late for her, but my only hope has been that at some point there will be more we can do to slow the progress of this disease (or even cure it!). with bush's veto he takes that hope away. it is heartbreaking and just so wrong.

Denise said...

Oh, Naomi, I'm so sorry that you and your family are going through this.

I support stem cell research and have been extremely frustrated by the Bush administration's position on this subject (not to mention the emotional and inaccurate spin they keep putting on this issue).

I really appreciate Gail's excellent explanation on the scientific reality. It's an ongoing rant (typically in the direction of the television news and presidential press conferences) here at our house.

I'll be thinking about your family.
take care

Loretta said...

Take heart in the fact that President Bush's veto does not affect the efforts of the private sector in stem cell research and the majority of breakthroughs occur in that area.

I hope things will work out for your niece.