Friday, April 06, 2007

Information and some answers

Over the past months I've received a lot of e-mail. It varies from "I'm praying for you" to detailed advice. I haven't taken the time to reply to all of them, especially the more detailed ones which in turn require a detailed response. It's easy to get tired of explaining things and justifying to family and friends decisions we have made, to be perfectly honest, even though I know the advice and questions come out of a sincere desire to help. So, I've decided to do a "questions and answers" post to address the questions we most commonly receive.

First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.

AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.

The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*

The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.

The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.

I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.

Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.

*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459

20 comments:

jtcosby said...

Thank you for the information. I am an uneducated woman when it comes to cancer and I, for one, appreciate your information. I will be continuing to pray for you and encouraging you to COOK your food!!!! (please know I am not making light of what you are going through!!!! XOXOX)
In Christian Love,
Tamara

Anonymous said...

So many times the attack your body is going through is not thought of in the terms you describe. Thank you for the information, it helps put my understanding more in focus again. I'm sorry we missed seeing you a few weeks ago when we were back in Missouri. I don't want you to feel guilty, it was best you didn't get around all the poeple who attended your Grandfather's funeral. I know most of that group pretty well and even I try to avoid them (just kidding).

It was good that Grandma got to see you last week. I know she really wanted to give you a hug as we all do. Thanks for letting her come see you. I know your Grandpa really appreciated your help through the years as he always told to me about the times you helped him and went with him. His love for you will never end even though he is gone onto glory.

We want you well in the worst way and we lift your name up to our gracious God often. He is a great God, full of mercy and strength. May He send that mercy and strength to you this Easter weekend.

Stay healthy,
Uncle Cliff and Aunt Karen

Anonymous said...

Amy, Brandon, and Gary Lee,

Always good to get your messages and this is no exception. It helps us to understand a bit of what you are fighting against.

Our prayer continues for you as we seek the Lord's direction in the effects of the treatments and healings thereby, or of other means, but all by His Grace.

Hope this Resurrection Sunday will be good for all of you.

Our Love To You All,
Don and Lilan

Dawn said...

This has been very information and helpful in understanding what you are going through. You should be awarded at least a master's degree for all of your knowledge. Blessings during this holy week!

Happi said...

Amy, we continue to pray for you and we wish you and yours a blessed Easter. May God continue to give you all you need during this time.
The Berger Family in IL

Rachel said...

Thanks for the info. I am still praying for you!

Have a blessed Easter!

Pam said...

I hope you all have a wonderful Easter together - the information you posted could not have been said any better. Well said and well taken:)

Linda Gifford said...

We went through the same thing when my Uncle had skin cancer. I think it was a wise idea to educate everyone so completely. You are a great teacher. Maybe you could get some CJ concepts across to my students! I am grateful that your bad tire didn't lead to a serious car crash. I am glad the Mannatech supplments are germ free!

Linda

PEZmama said...

After reading this post, I have an image in my mind of you sitting down at your computer and reading dozens of e-mail messages while you furrow your brow and shake your head... and it occurs to me, as it has many times with others in your kind of situation, that it is often best to simply say "I'm praying for you" and leave it at that.

If we pray, we can trust that God is leading you, your family, and your doctors in accordance with His gracious will. This is how I have been praying for you. I will continue to pray in this way and I will continue to trust that God is able to work mightily on your behalf without my (ill-informed) advice, however well-meaning it might be.

It is clear you are a woman of grace. Know that you honor God. Blessings to you and your family.

Morgan said...

Just want to send our thoughts and prayers. Our family is praying for you! I am so sorry for all that you are going through.

annb said...

I can't imagine going through what you and your family are living every day! Your faith in our Lord is so amazing and I am in awe of your strength shown through your writing! If we all could share your great faith,trust and understanding of God's healing powers what a great world this would be for all of us! I continue to lift you and your family before God in prayer and ask that he continue to carry you through these difficult days!

Lindsey said...

I learned of your blog through someone who posted about your story - I will be praying for you and for your family.
Your sister in Christ,
Lindsey

Jenni Halley said...

Amy, you said it all! With Brian's stage 4 melanoma, I find myself always explaining why we are or aren't doing things. I always want people to understand that we didn't ignore their advice. We know many people who have been to MD Anderson and are in remission, and the majority of them think we are simply crazy to still be at Ellis. What they don't always understand is that we are indeed under the advice of MD Anderson, and that Ellis actually has more to offer in the way of treatment for Brian's specific cancer than MDA would be able to offer. You did a wonderful job of explaining a difficult subject. It is clear in your post how much you appreciate everyone's advice and information, and that you had to take each piece of knowledge and apply it directly to you, Amy Wilhoite, AML patient. My advice to you is to keep learning all you can, and to keep taking precious care of yourself and your family in the best way you know how. May God bless you with good health soon and always.
Jenni Halley

Carrie said...

Thanks for your time in educating us! We continue to pray for you often.
Love,
Carrie

FunkyMonkeyJunk said...

Amy,

I too have struggled with well-intended medical advice from Everyone and His Dog, as I've struggled through my journey of infertility. Unfortunately, I've show much less grace than you have. You have reminded me that the intention IS important and sometimes the best way to accept our "lot" is to smile, say thank you, and educate wherever possible. Your testimony is a strength and encouragement to me. Thank you for that!

Andi

SLB said...

How thoughtful of you to explain in a tactful way. I am pretty much done with my battle with Hodgkins and I appreciate especially your feelings about "advice" from others who were touched by a different kind of cancer- you are right, they are not all the same and your blog has kept me cognizant of the fact that my journey may not be indicative of anyone else's journey. I, too, was told I needed to switch to all-organic diet and got a little flak for doing chemo in the first place. Thank you for helping to educate many people on AML and some thoughts on being supportive of cancer patients (and families) in general. You are amazing- keep fighting!

Melody said...

Thank you for writing this. There are so many of us out there with ailments and diseases that can say a hearty AMEN to the fact that what may be healthy for one can kill another! Even different doctors can have conflicting opinions. My GYN wants me to eat things that would destroy my kidneys because "people my age" need these things. She doesn't know anything about the kidney disease I have, she's never heard of it! All we can do is pray and do what we think God is telling us to do and trust Him to handle the rest of it Himself.

I have been praying for you and baby Ethan Powell for a couple of months now. I didn't realize until today that you both have THE SAME THING! I am looking forward to seeing how God works in both of you.

Sarah's In the Midst of It said...

I've been following your blog for quite a while and have been praying for you, although I usually read without leaving many comments.

This was such a gracious post--it's amazing to me that people offer you advice, when you are the one going through this! I'd think you are more of an expert on this than anybody else, outside of your own doctors :)

Thank you for taking the time to educate us, and hopefully the emails you get from here on out will be encouragement and prayers only!

Anonymous said...

Super job explaining the ins and outs of some of your choices. My best friend and my sister in law both had cancer while I was pregnant with my first child (friend was pregnant too, yikes) and the food thing was a huge factor for both of them. I remember Easter with my sister-in-law when she was neutropenic and neither of us would touch the devilled eggs that year; and she took real pleasure in cooking foods that were safe and healthy for both/all three of us, trying to grow my baby and starve her cancer.
We are still praying and cheering for you here in Pennsylvania. We want so much for you to be and feel well, and appreciate your sharing. Leaving you as always in God's hands!

Joe.Karen said...

we were able to relate to all that you posted in your blog. thank you for your honesty and grace.
love,
karen & joe