Friday, December 14, 2007

Upset

Well, it looks like I might have hit a nerve with someone. I am sorry Shawny, I get as frustrated with the system as you do for many reasons. Most of which, the system can't cure me and allow me to live more than maybe 4 years if I am lucky. At least that is what I was told today. So, I am frustrated too. I did have a connection, but one for Colorectal cancer, and that is partially because I, also, work in the medical field and work with physicians who have many contacts all over the place. Trust me, I had to spread the word far and wide to get the connections I did have. As much as I would love to help each and every person, I unfortunately cannot have my dad call for someone, especially because he doesn't even know the situation. That is why I recommended being persistent, that is what we did and that is how to get through the system, call, call, call! That is how I did it and that is how I think everybody has to do it. I wish her the best of luck, I don't mean ill harm on anyone. Nothing is easy about this!! I make calls almost every day to one doctor or another, I am consistent and persistent in trying to find the best treatment out there for me and monitoring my own care. I have been let down countless times, even today. The doctor basically said the treatment I am on is the best treatment right now until I start to fail with that treatment then there are a few more options. So I guess that is the bright side of it, I still have a few options left to try to keep me alive longer. That is all they can do, try to keep me alive longer. I don't know if that is good or bad. Would I rather pass away now when my daughter won't remember it, or in 4 years after these past several years watching mommy suffer on chemo and when she will know me better and know what is happening? Take your pick! Either way, I am going to break my daughters heart and I can't stand it!!!! I can't believe I am going to do that to my daughter, and I have no control of it! So, please don't add any guilt to my plate, I have enough to last my lifetime! I will keep this girl in my prayers as I do all of you who are suffering with cancer and all of you who help me each day by reading this and supporting me. Thank you. Good night all. I am hoping to wake up to a snowy winter wonderland tomorrow so we can go sledding and build a snowman with my family! Gotta cherish each moment. love, shawndra

29 comments:

Kelley said...

Gosh, I had to go back and read the last posts, I was afraid I had offended you. While I understand the frustration of Shawnys post, I also know where you are coming from. It is a HUGE game, a gamble, and it takes alot of phone calls from anyone that cna help......however, you have your own full plate to deal with, you cna't bear the weight of everyones ills. This in no way means that you don;t care, we all know you are not only praying for you own health daily, but for so many others that have connected with you through this journey. Continue to pray for all, don't let guilt drag you down. You are awesome.

Anonymous said...

Shawndra,
Amen to you girlfriend!!
Keep your positive attitude and your amazing grace and remember you have a whole lot of people praying for you. Stay strong.
Miki

Dinah said...

SHAWNDRA,,,,,,,,

That is a shout....., remember you must do ONLY what is right for you and yours..... You are brave and strong and must not feel guilty, you are the most important thing to all around you and your darling daughter. I know you will stay focused on keeping yourself strong and brave. I will continue to pray for you and your family. Was sad to see the last post from Chris Ireland, wasn't it? You should be proud of your connection to their foundation. Have a great evening and a great week-end. I am hoping for massive snow in the a.m. also. dinah

Anonymous said...

Shawndra,
I commend you for this post. Focus on your family, your health and don't let the guilt get you down...easier said then done right? All you can do is continue to be the wonderful person you are who is using her voice to bring awareness to others and to tell them to be persistent in their healthcare. Your strength amazes me. I will continue to pray for you. I hope you get all the snow you need for a fun day of sledding and snowman making.
Melody

Karen said...

I agree that persistence is key! I've been reading your blog and thing you are amazing! May I suggest that your friend look into the Mayo Clinic? I'm not sure what they offer for her type of cancer, but it might be worth checking. I was able to get an immediate appointment there the first time I called (I called on a Friday and got in the following Monday morning!) and I didn't have any connections to anyone at all. I was just a run-of-the-mill terrified cancer patient.

Stay strong! I have a two-year-old little girl, too, so I relate to everything you say.

Anonymous said...

Oh Shwndra... I feel for you! I am sure Shawny didn't realize the magnatiude of what she was saying. You cannot possibly call on behalf of everyone who comes across your blog and asks for help! You've got yourself and your family to think about. Please don't let those guilty feelings creep in. You are going to win this fight! Much Love!

Anonymous said...

Shawndra, Don't forget Don Piper's message to us. The power of prayer DOES work, and miracles DO happen! Keep on persisting and demanding answers and options, God is leading you in the right direction. I hope you have a wonderful Christmas, you deserve it. You are never far from my thoughts, and always, always in my prayers.
Julie

Anonymous said...

There is another option- the power of God and HIS awesome ability to heal. There is a place in Kansas City called the House of Hope and Healing- it is a ministry of World Revival Church. There are people there that know how to go to war and testimonies of defying Doctor's reports- real live miracles- happen there everyday. The address is 9900 View High Drive. Phone is 816-777-0707. They are open everyday. I challenge you to give them a try- it's worth your time and effort, especially considering the report you've been given. Peace and the God-kind of LIFE to you that can be had and experienced on this side of life.

Kristi said...

Hugs to you Shawndra. I hope that you are enjoying the beautiful snow today. Stay strong!

Anonymous said...

Shawndra,

That post broke my heart...I hope you don't feel any guilt for what you can or can't do for others. You are fighting your own fight, and we all know that you are praying for those in situations like your own. That's all you can do. That's all any of us can do.

I hope you got the snow you wanted this morning, and that you and Ella could go sledding and snowman-building! Here in the Northeast we are getting close to 2 feet of snow...I'd be happy to send some your way!

Stay strong, Shawndra. You are in my thoughts everyday.

Prayers to you, my friend.

Michelle

shawnysmoonbeam said...

Hey guys,
I didnt mean that shawndra has to call on everyone.I am not uset with shawndra ,I know she has herself to take care of.I am mad at the system,period.I didnt mean to make her feel guilty that was not the point.It is very unreasonable for me to expect someone to help everyone,that is impossible and a loosing battle.I am sorry Shawndra if my comment hurt you it really was geared for the horrible medical system that we all have to deal with and it bothers me that people suffer because of it.I know your a wonderful person and mom and will do for others.Like I had said in the comment I probably sounded harsher than what was meant and not aimed at you.
Happy Holidays
Love Shawny

Anonymous said...

Hi Shawndra,

I hope you're enjoying the snow and that we'll get to see some photos of you and Ella playing in the white stuff!

I keep telling you how much I admire your approach to life, but your courage and spirit continue to inspire and amaze me. Our medical system is so difficult to navigate because it's not designed to necessarily save lives; it's designed to create revenue for (mostly) insurance and drug companies. Which is why your advice regarding persistance is absolutely key.

As unfair as it might be to have to fight a medical system while battling a disease, we and our families are own best advocates in medical situations. You have every right to pursue any avenue available to you, period, whether those avenues are available to others or not. You did not create this country's broken healthcare system; all you can do is navigate the system and fight like heck for what you need.

Please, Shawndra, do not, for one second, feel guilty for doing every last thing you can to fight this disease. To not do so, to ignore connections that have perhaps been put in your way by god/the universe/to whom it may concern, would be a travesty. You deserve every chance you get to fight back at this disease; every person in your shoes does, and I doubt anyone can honestly say they wouldn't use any connections they might have if faced with your situation.

You, Doug, Ella and your families are in our prayers. I will pray that you're able to enjoy Christmas, that you and Doug continue to be sources of strength and inspiration for one another, and that you will have many more holidays as a family.

As cheesy as it sounds, you are a bright and rare spirit. You inspire me to be a better person, to live a better life, to hug and love my friends and family more. Thank you for that gift.

There are many hugs and good wishes coming your way from Southern California. (Where, by the way, we think it's "freezing" because it's 65 degrees at noon.)

"Freezing" my tush off,

jg

Anonymous said...

Hi Shawndra,

I hope you're enjoying the snow and that we'll get to see some photos of you and Ella playing in the white stuff!

I keep telling you how much I admire your approach to life, but your courage and spirit continue to inspire and amaze me. Our medical system is so difficult to navigate because it's not designed to necessarily save lives; it's designed to create revenue for (mostly) insurance and drug companies. Which is why your advice regarding persistance is absolutely key.

As unfair as it might be to have to fight a medical system while battling a disease, we and our families are own best advocates in medical situations. You have every right to pursue any avenue available to you, period, whether those avenues are available to others or not. You did not create this country's broken healthcare system; all you can do is navigate the system and fight like heck for what you need.

Please, Shawndra, do not, for one second, feel guilty for doing every last thing you can to fight this disease. To not do so, to ignore connections that have perhaps been put in your way by god/the universe/to whom it may concern, would be a travesty. You deserve every chance you get to fight back at this disease; every person in your shoes does, and I doubt anyone can honestly say they wouldn't use any connections they might have if faced with your situation.

You, Doug, Ella and your families are in our prayers. I will pray that you're able to enjoy Christmas, that you and Doug continue to be sources of strength and inspiration for one another, and that you will have many more holidays as a family.

As cheesy as it sounds, you are a bright and rare spirit. You inspire me to be a better person, to live a better life, to hug and love my friends and family more. Thank you for that gift.

There are many hugs and good wishes coming your way from Southern California. (Where, by the way, we think it's "freezing" because it's 65 degrees at noon.)

"Freezing" my tush off,

jg

Anonymous said...

Shawndra,

I know how discouraged you must feel hearing what the doctors told you. However, please also know that there have been major advances in colon cancer chemo here in the US since 2004. Who knows what treatments may be coming up in the next year or two and one of those might be the one that cures you. So, don't ever think that 4 years is it. People have way outlived time limits given by their docs and, in addition, new treatment plans can come up during that time. I am praying for you and for your cancer to go away and for your CEA levels to drop below 3.0 and for a cancer free life and for you to be here to raise Ella and for you to grow old with your husband. The mind and spirit are powerful tools. Please stay positive and believe that you can beat this - you can and I know you will do everything in your power to do just that. I wish you, Doug and your families peace and hope this holiday season.

N

Anonymous said...

Life is unfair and that is just a sad fact of life. Shawndra is a beautiful woman who has added so much to my life over the past 26 years.
There are pros and cons to everything. I know this is easier said than done, but quit focusing on what you can't do and focus on getting something done. I have had experience with this and I know that Shawndra and her family has worked very hard to find her the very best treatment. The main reason her dad is the one reaching out, is because he can talk the talk better than most and that has been his special contribution to her fight.
I can think of countless times throughout my life that I've called about an appointment, a job, getting a drug approved by my insurance, etc and was turned down. In most of those situations, I called back (on what I thought was a whim) and got what I wanted.
Shawndra has been an important part of my life for most of it. You better believe I spent hours and hours online doing all of the research I could. I even tried "pulling strings," but got no where. I know that this disease is maddening, especially when you feel so helpless.
My plea to all of you out there who read this blog - PLEASE do not add more stress to Shawndra's life. I know she is happy to answer any questions or pass along advice, as she experienced so much. She is GIVING this to all of you. Please accept it as that and use this as motivation to take control of your own lives and to work to help those in your life who might be in need.
PS - I know others who have been treated at MD Anderson without any "strings." Be persistent.

Shawndra - I love you. d

Markdeb said...

Shawndra,

While I was very sad to hear about your bad day, I am glad that you were able to vent your frustrations. It is so important for you to let it out and talk about what you are feeling. We can't fix the problems you are going through, but hopefully can offer support while you fight through this.

As many have expressed, your focus, and that of your family, has to be on your own health and care. Please know you have already done so much by getting the word out that cancer affects people of all ages. You have also gotten the word out that are system is flawed and that we need to work harder to fix it. You have also helped so many people through your blog with prayer requests. Those things alone are impressive for anyone and you should be proud!

I hope you know that every day you live and fight is a day your family, friends and daughter will all treasure. No matter what happens, we will not think of you as a person who was sick, but a person who inspired us all.

We all enjoyed getting to visit with you last week. We look forward to seeing you again on your next visit.

Debby

Anonymous said...

Shawndra, You go girl!!!! Once again you have brought me to tears, joy, sadness, laughter. You have changed my life. No kidding girl. You know my Mom went through this battle and she lost but she did it her way. With me as her advocate, her in Virginia and me here sometimes those phones lines were my only connection to tell whoever I needed to what they had to do. You have to fight for you and yours and then take on others as you can. The one thing I can say is that your battle is so far from over. You NEVER know what the power of prayer and new treatments will do. People are told everyday, they only so long and the defy all odds and make complete recoveries. You keep up your wonderful sweet spirit and know that you have what it takes. You can do this!!!!! At a time when you give thanks, I give thanks to you for being an inspiration. Thank you for sharing your love, venting, sadness, family etc. You make me a better person!!! Melodie Chrisman

Anonymous said...

Hi Shawndra!

I'm not sure if you ever need "blog topics" but how is Ella's potty training coming? : )

sue said...

Shawndra, NO-ONE and I mean NO-ONE knows how long you have to live! Dr's are not God, and they make many WRONG predictions! I have several friends who have given prognosies like you and have out lived their dates by YEARS! Live for today--leave your tomorrows in the hands of God. Please try and be happy with your time now. Oh yes--I am one that has outlived my time....

Anonymous said...

shawndra- one of my biggest fears as a parent is that something might happen to me before my girls are old enough to understand how much i truly love them. never think that by living longer you will break your daughters heart, she will only grow to know and love you more, and have that love to cherish throughout her life, no matter where you are. and, you are not alone in the desire to live another day, we all feel that way but some of us get to use our "good" health as an excuse not to think about it. you have been given something special because you understand how little control we have in life, and how much of it is up to God's plan. i just had to share my thoughts tonight, you last post really touched my heart.
-becca

Christina said...

Shawndra-
I lost my father to cancer when I was very young. Perhaps you will find some comfort from my experience. As I am sure you already know, children are very resilient. They tend to remember the good. Your daughter probably won't remember Mommy being sick, but she will remember Mommy and all of the good times you had together. She will remember the way it felt to have Mommy hold and kiss her, tickle her and tuck her in at night. So, whether you are here for two weeks or twenty years you are leaving behind something that your daughter will remember. Your molding her into the woman she will someday be. Keep up your wonderfully positive attitude. You are an inspiration to everyone, sick or healthy. Please remember that miracles happen every day. I will keep you and your family in my prayers. God Bless
Christina
Olathe

Our Family said...

Give Doug & Ella every moment you can. Miracles happen. We will keep banging on God's gate with prayers. You're so amazing.

Anonymous said...

Shawndra-
I want you to know that I read/check your blog everyday. I found your site along with soo many others through Jennifer Ireland's site. Please disregard the comment that Shawny left you- I have read other blogs where she has left distastefull messages as well. From reading your story I can see that you are a strong woman and have a great family and friends(some you don't even know) there supporting you.
Sending prayers your way

Anonymous said...

Shawndra-

Hugs to you and your family! You continue to be in our thoughts and prayers.

The Mudge's

Anonymous said...

Hi Shawndra. Thanks for being so honest and sweet with your feelings. You are such an amazing person and I grow to love you and your family more and more everyday. Four years is an estimate and I think they are estimating about 60 to 70 years early. I think there is a treatment out there that will work for you. We will just all stick together on this. We will continue to pray together and prayer is the strongest treatment we have. God has a plan for your life and it might just be that you are going through this to bring others closer to Christ. A miracle might happen in your life and one of the people reading this everyday might be the one life that your story changes. I am not going to stop praying for that miracle. I really believe it will happen. Keep on believing!!!!Michelle

Anonymous said...

Shawndra,
Please don't under-estimate the importance of the Love that you are giving to Ella right now.
None of us know what may happen in the next 4 years but I believe that every laugh, smile and hug you share with her now is making her into a confident, loving, HAPPY person.

Jess in Nebraska said...

Shawndra...I read all the time, but haven't posted in awhile. NEVER live your life by a doctor's prediction or statistic. Although I disagree with some of the things Lance Armstrong has done in his life, his biography about his battle with cancer is so inspiring. The doctor's gave him a 20% chance of survival, and then he went on to win the Tour De France over and over...and he's alive and very well years later.It's a great inspiration if you need any reading material.
As someone else mentioned, NONE of us know what is in store the next 4 years, or even 4 days! God is the God of miracles, and I definitely believe there will be one in your life and your testimony will change lives everywhere.
Hope you have a great week, and push out any negative thoughts that come in with prayer or scripture, that always seems to help me.
Continuing to pray for you!

Anonymous said...

I can't imagine the stress you must be going through. It's rough enough to be sick, but to have to be your own advocate sucks (for lack of a better word). Just know that there are alot of people who care for you and send up prayers daily for a miracle.

Nicole M.

Anonymous said...

Shawndra...you hang tough, girl!! 4 is just a number. So much can happen in medical advances during that time, which I know you are well aware. You are doing the right thing....carrying on with your life and your family. I hope you have a wonderful holiday season and a great time skiing!! You are awesome and I appreciate that you are sharing your story with us. You are an inspiration to so many...and so many that you have never met!! What a gift!

Happy Holidays!
Tricia
(a fellow Mercy employee)