CLUB SAMMICH CAFE©: Lymphoma and the Mission.

A Story Close to My Heart !

Sat, 02 Aug 2008 01:11:39 GMT

I read many blogs and spaces daily. It seems at times my list grows. With some really heart warming and inspiring blogs. Tonight once again I have to share Nate and Tricia's Blogspot. Some how I was brought to this story and for ever changed by this young couple faith and fight for survival.
Tricia is a young woman who by all means fits the bill of a fighter. She has lived all her life with cystic fibrosis and now due to a double lung transplant she has a form of Lymphoma which she is now in treatment for. She is an amazing young woman. Who prior to transplant gave birth to a micro premmie. All the while her husband Nate staying close by her side fighting with her. Its an amazing story.

Tricia did one of the same treatments that I did, but it did not work .So her doctors have started her on a new treatment. So she is experiencing many things right now and soon will loose her hair as well.

Today I went to the blog and found something to share. Nath is with all of us fighting this disease called Lymphoma. He has pledged to raise,$3,OOO.
Starting August 1st to August 8th. IF he hits his goal. He will Shave his head in support of his Wife Tricia.

I want to tell all of you who read here something. I went there to read to day and this story proves how many families deal with lymphoma through out families . Not only are Tricia and Nate dealing with a form of Lymphoma. But so is her sister Janet's Husband Jeff. Like me his disease is incurable.

I encourage anyone reading this blog, those who comment and those who just fly in and out . Please make your way over to
CF Husband Goes Bald Check it out. I also want you to click on the link to go to the donation page for one second. I want you to watch the amounts scroll simple because the amounts are what people can afford. One reads $2.25 and others are more. However ever penny on there goes to those fighting these cancers. Its not about the amount every cent counts and is put to use. I want everyone to see what Nate has done in a 8 hour period. Its amazing. This is an amazing young man with a heart of gold out there helping so many. This it how it gets done folks.

Families like us wanting to help each other.

More to come. But take a look . I promise you this a story that will touch all of you. It has my total family as well.
It renews my faith in others fighting similar things as we are as a family and those willing to jump in and help. Its awesome.

I am betting Nate has to shave his head . And he will reach his goal by Monday. Thats how much support is going out to his family.

You know we hear so much garbage and read so much rotten news in a day. I for one what to read real life stories of great faith in times of hardship. I love reading about people who inspire. This is truely one of those stories.

Come on now go read...What do you have to loose??? It will do your heart good....:)

Hugs and prayers always Hope

PS...More to this story. If Nate reaches his goal of $3.000 by 12midnight Monday August 4 . I will buzz my Head. Simply in support of Tricia and Nate and others with lymphoma. If by August 8th, he reaches $5,000 or more I will shave my head then post a picture here and on my other blog.Which I will post the link later. He is well on his way to his goal. I have sent him an email as well. In support what he is doing.

I know some will think I have gone off my rocker. But I know a few who did the same for me. So I am off to check out the buzzer. I got a feeling I am going be having a buzz cut soon. LOL Plus its only hair and it will grow back. I belong to the *Sister Hood Of The Bald is Beautiful* anyways as a survivor. (I know hugs heal as well as support going through the process.) So I know my head looks better then Nate's does.!! :)

So I am posting this so he knows I am up for the challenge! So if you are reading this blog more to come!!

Have a great night everyone...More to come. Always HOPE, Always

Monday already!

Mon, 28 Jul 2008 04:07:55 GMT

Ahh its almost Monday!! We have a few things going in the morning appointments to make with the Surgeon for Hubby . Than as well as a few test appointments of me. So that will be done early.
Then I will be out and about getting help with The Light The Night Walk. We have some ideas out and about there. So just waiting on a few call backs. I am kinda not taking no for an answer. Kinda give me a reason..why! So that said. I feel good about things! At this point.

Was a very low keyed weekend. But that was a good thing. Friday I hit a brick wall fatigue wise that is never a good thing. The only thing that helps is sleeping at that point. I felt upset by it cause it caught me so off guard this time. If I only knew when its going to hit I could do something about it. I still think it has a lot to do with how my immune system handles stress. When I am under it. It always catches me that way. Hitting a brick wall is not a good thing. Its a bone tired that nothing helps but sleep.

So that said. We all kicked back, most of the weekend.

I am off for some rest...Hugs and prayers Hope

Bumping it up

Wed, 16 Jul 2008 20:06:45 GMT

*Write to be understood, speak to be heard, read to grow.*
Lawrence Clark Powell

I think there is much truth in this quote.
When I started this space a few years back I never really thought much about it. It was just a way of journaling my thoughts for the day and sharing my photography with others.
Now its way more then that.
Its an autobiography of my life with lymphoma of sorts.
I hope it ends up more to some then just a cancer blog.
Something people don't just look at and walk away.
Due the stigma that goes with it.
I received two emails today. One that told me thanks for my story and for wanting to make a difference.
Then one from someone who doesn't think cancer should be talked about so openly.
I had to chuckle.
My one reason for the chuckle is.
Cancer, lymphoma are chronic diseases
We live with them on a day to day basis. There is only one way to do that. Accepting it and dealing with it.
IT applies across the board to diseases like MS, ALS, Diabetes, Heart Disease and Thyroid Disease.
All diseases that are chronic...all fit the category
But cancer gets the attention.
CANCER!
That word is eye popping , mind boggling and scary as hell.
Rightly so, But I have what I have and the rest of the secondary stuff comes with it.
Remission means..I am stable thats it. But I deal with it on a daily basis and will for the rest of my life.
So to say not talk about it cause it makes some one uncomfortable. Not happening.

I also don't think I can candy coat my usage or choice of videos.
Here is the reason:
More than 820,000 Americans -men, women and children of all ages-
are battling blood cancers. That's why each year in hundreds of communities across the U.S. and Canada come together for a common purpose:
They Light The Night, raising awareness, raising funds and raising hope for the people touched by Blood Cancer and their families.
I could go on and on and I will.
*Every 5 minutes some new is diagnosed with blood cancer.
Every ten minutes some one loses the fight.*
I know this I lost my best friend to Chronic Lymphocytic Leukemia in Sept 4,2004
*Leukemia causes more deaths than any other cancer among children under the age of 20.*
I can't live with knowing that. Thats why I am talking about it.
The LLS is working towards that.

We need to change these facts.

Think about this for a minute:
20years ago a child had a mere chance of 5% to live.
Today the survival rates have climbed to 80%.
However, the fact remains that leukemia takes more children's lives than any other disease and strikes ten times as many adults than children. Childhood cancers are the leading death of American Children.
For me to read that statement is mind boggling.
Its hard to fathom reading it at times.
Non Hodgkins Lymphoma my form of cancer. Known as NHL. Is one of the most common cancers in the United States ( bet you never knew that) Those numbers are on the rise.
Luckily , everyday there is more information and more treatment options.
NHL affects a certain type of blood cancer cell called the lymphocyte. Lymphocytes help defend the body against infection. Lymphoma cancer can be caused when an abnormality occurs durning lymphocytic development. This ulimantely results in abnormal cell. These abnormal cells can duplicate faster and live longer than normal cells. Like normal lymphocytes, cancerous lymphocytes can grow in many parts of the body, including the lymph nodes, spleen , bone marrow and other organs.
Most have never heard of this cancer . Less it affects your family.
Luckily today there is more information from reliable sources out there.
And more treatment options as well.
I am not doctor. So thats important. But so is this.
The symptoms there are several...that might indicate NHL
Chills, sweats(mostly at night) fevers, lack of energy, unexplained weight loss, or itching that doesn't go away. You may think you have a cold or the flu. The most common way lymphoma occurs is in a painless lymph node under the arm, neck or groin.
Please see a doctor if you have any of these symptoms. That is critical.
I also have listed sites on the left to help you inform yourself.
Current info that is always updated.

What I think is really important cancer makes all of us uncomfortable. Even with having it..I am cause there are so many cancers out there that how could you know everything about them. Knowledge is power and that frees us up for change.
IF we stick to the stigma of not talking about it. Then what have we learned?
Thats what this space is about educating others. Yes its a hard lesson.
But whats worse is sitting back watching it happening to others , not sharing, what I have learned. Its like shoving in under the proverbial carpet and or sticking my head in the sand. That makes it more uglier then it has to be. Oh its ugly believe me but a catalyst for change.
This is 2008 and things just have to change.
There are people out there to help us. Treatments are changing and lives being saved.
I am living proof of that. But we need more Awareness in this country.
Its a challenge but life often is. No one has to be alone with cancer. Support is what keeps me strong on a daily basis.
Sharing my experience here is paying it forward.
In hopes to help others and give them a hand up.
So thats my thoughts for today. I am off to pound the pavement...to make a difference.
I can't sit idly by when I know just how it is .
Go out and make it a great day.
Always Hope.

The Light the Night Walk Thanks LLS. for all you do in my behalf and my family.

Why This Space Came About.

Wed, 25 Jun 2008 18:00:28 GMT

Last night I was thinking about how much time is taken when your sick trying to take care of things and understanding them . One thing I didn't do was spend time being angry or sad. When I think back . Maybe I just didn't allow myself the time to do some but no two people cope the same I guess. I also think back and being angry , then staying there said meant being negative.. Now I realize it was wrong to think that. Those feelings need addressing and are pretty normal in cancer patients .

Then something happens as you work through it. At least with me it has and did. I needed to take a full look at things and move on to make it something positive out of the experience.

One thing has happened with this Space and its a good thing. It gets the word out about this disease. Although not many post. I know the word is getting out when I write about it. I am not afraid to talk about it. Nor do I think keeping quiet and just sitting here not saying a word will help others.

So here is my Mission:

This Space as most know is called Club Sammich Cafe. Why is that? Most don't ask and some just plain don't know. So here it is.

1. Club. We belong to a club that no one ever wants to belong to. The Cancer Club.
2. My favorite Sandwich is a Club Sandwich or as some might say Sammich. lol I know I know Being from Michigan. We took on Club Sammich on as the name.
3. Most do not know when I finished with my first chemo treatment monthly . I went five times a week each month for six months. My Husband decided each time
we were finished that we would celebrate with lunch out. Each time we ended up at this one Mexican Joint....Hence : Cafe. As I have gone through treatment to a better
point being stable. We continue to Talk about Life over lunch.

When I started this Space. It was a place just to talk like a journal and its evolved in to a forum to educate and help others. I never fathomed how many might read it and how many links would come from it.

So many positives came out of my continuing experience with lymphoma and thats a good thing. One thing I know is that you can be negative and not get many results. you can sit and sulk and stay in that place. Or you can get out talk about it and share. The old stigma of cancer for me is gone. One thing I have learned is that yes many die of it. And My heart goes out to those who have lost loved ones. I have and its a tough thing. But if I can save one person that grief then talking about it. Getting out making it known, Is well worth the effort it takes.

I want people to to know that there are those of us out here breathing and walking around living with it daily. Its funny I have had my ups and downs with this damn disease. But all and all there are many who pushed for me to survive it. They still do daily. So this space is really for them as well as for me. There is a big effort to make life better for those with cancer...many positive people working towards better care and cures. It doesn't take much for me to go out and talk amongst them and say thank you for the effort made.

Now the chore is bringing others on board to understand the fight . Thats where I come in as a patient.

So in the future you will be reading about my treatments and how I got to the other side. I really want people to know its worth the fight. I have heard to many say treatment isn't worth it lately. I am here to say . IT IS! ”I want those I sent here recently from a few different chats and forums I go to . To look on the top right and watch the: Survivor Movie.
Then you will understand my thoughts and why I stay positive daily in the fight. Its not to say my journey was easy. Heavens no it wasn't if I said that it would be a lie. But being on the other side...brings positive reinforcement this thing can be put into a stable state even with stage4. I am proof of that.

The other thing I want all of you to know is this. I had a Grandpa with Lymphoma to. He died of lymphoma in October 1985. I never knew what kind of cancer he had. I never was told till I had it the second time. All I knew is that he had cancer. I remember taking him to treatment and how grueling it was. So I can attest to the new treatments out here and how very different they are. Yes chemo stinks and its tough. But when I think of my Grandpa, I got it at good time treatment and things given to help us through it are so much better then years ago. That my friends is due to research and so much going out there to help those with Blood Cancers. Minus Research there is nothing new and nothing to help us. I am here to talk my head off about it. I am here to bring attention to how much its changed. Had my Grandpa been alive now . He might be stable like me. Although thats hard to know for sure. One thing I do know is if it was now. He would of had a better chance now. Just as I do and many.

So this is 2008 and its time to talk about Cancer. Not sit here and shove it under the proverbial carpet. Besides its huge wide elephant anyways that resides with me daily and there isn't a carpet large enough to cover it.

So this Space is of great importance to me, my family and friends with lymphoma. Talking about it brings awareness and if thats my job as a survivor then its a positive one to have.

Cancer does not define at all who I am. But it gives me great purpose to go out and help Kids, Women and Men in the same situation as myself. This is huge guys, If you only knew the half what I will see today at the Kickoff it would blow you away.

More to come.

Hugs and Prayers Always Hope

Kickoff!

Tue, 24 Jun 2008 23:15:10 GMT

Tomorrow is the annual Metro Detroit Kickoff Celebrating for the Light The Night Walk with the Leukemia Lymphoma Society.
I can not wait. Its the one time per year that many get together and work towards the goal of finding a cure for Blood Cancers!
Meeting a goal means fund raising and hitting the streets to talk to others in behalf of many about help for those dealing with these cancers.

This year this is very important to me . As I myself have had to take part in the LLS Copay Assistance Program. Not only locally but in the process of applying Nationally as well.

I don't have to tell anyone the cost of copays and or medications even with prescription coverage. So anything helps.

For those unable to take part in disability this is a great help. So I am committed to get out and fund raise to help others like myself who have the need.

The other thing is there is a cure around the corner. In almost eleven years I have seen a lot of changes in treatments for Blood Cancers. Mainly NHL. This is a very positive thing.
Those of us out there with these cancers are RELENTLESS to find a cure.

Leukemia-Lymphoma Society
Our Mission :To Cure leukemia, lymphoma, Hodgkins's Disease and myeloma, and improve the quality of life of patients and their families. What I want you to know is this a non profit organization that relies on the generosity of corporate and individual contributions to advance its mission.

So that said. I will do everything I can to help those fighting these diseases. Last year I walked in a cast ..IF you all remember. So no matter what I will be there rain or shine this year simply for those who can't walk. Because I can.

More about this later. My Light the Night Walk Site is on the Left. Under the Light The Night Logo. Going to Make some Changes shortly there but look for them.

Gotta Run. Team Meeting...Have a good night. Hugs and Prayers Always Hope

Makings Of A Team.

Mon, 14 Apr 2008 15:57:22 GMT

I love this time of year. People are out and about. Like yesterday some of us set goals to do certain things to help others. This week is about forming my Team for Light the Night. I have chosen the team name as Grandma's Camp. So much fun being a team Captain. Now its getting team members signed in and up. Then its doing the work lol. Anyways last year in a 6 week period it was a rush to get funds raised. For a small team of 4, raised over $948.oo . At appox. $212.oo each.
So not bad for fast work and that short of a time. Just shy of where I wanted to be.

So we are working on that today. Its been a lot of fun and the Walk itself is the crown jewel as a survivor. Its there where you realize just how lucky you are and what a blessing life truly is.

Letters to write and press releases. All things that help bring awareness. More to come.

Its a great sunny day here they highs in the 50's. I was out earlier and it was a bit nippy. I actually took my warm coat and flipped the heat on in the car. I noticed buds on the trees and the grass is getting so green from the weekend slush fest we had. Not snow and not rain.LOL Gotta love Michigan this time of year. Every day is so different in April. Never know what it will be like. But sunshine of any kind I will take it.

I am off. Make it a good day everyone.
Hugs and Prayers Hope

September Awareness

Fri, 14 Sep 2007 03:57:10 GMT

	September Is Leukemia, Lymphoma & Myeloma Awareness Month

	September 12, 2007 (Press Releases) - Contact: Andrea Greif, (914) 941-0237 or andrea.greif@lls.org Tremendous advances have been made to treat blood cancer, but the battle is far from won WHITE PLAINS, NY - Remarkable progress has been made in treating patients with blood cancers. Sixty years ago there were few effective treatments for children or adults with blood cancer and the rate of survival was very low. Today, about 75 percent of children with acute leukemia and nearly 80 percent of children and adults with Hodgkin lymphoma are cured. Improved therapies and stem cell transplantation have dramatically improved survival rates for most blood cancers, and even patients with diseases resistant to treatment, such as myeloma, are benefiting from new drugs that are increasing the rate and duration of remissions. Yet, more than three quarters of a million people in the United States currently have some form of blood cancer. Every ten minutes someone dies from a blood cancer and an estimated 52,310 will die from one this year. The Society is a beacon of help and guidance to those touched by blood cancer and each September the Society observes Leukemia, Lymphoma & Myeloma Awareness Month, to shed light on these diseases and let the public know that there are resources available for blood cancer patients and their families. "Awareness Month is an opportunity to increase the public's understanding of blood cancers and encourage people to support the funding of research to find cures and education programs to help patients have the best possible outcomes throughout their cancer experience," said Dwayne Howell, the Society's president and CEO. Since its inception in 1949, the Society has invested more than $550 million in research to find cures and better therapies, and funded $64.9 million in 2007 alone. The Society supports investigators' efforts to find new molecular targets for treatment and potential immunotherapies, and helps them translate their laboratory findings into more effective therapies for patients. Through its patient services programs, the Society offers a comprehensive array of education and support services to blood cancer patients and their families There are family support groups, patient education workshops featuring health experts, and First Connection - a peer-to-peer support program that matches newly diagnosed patients with trained volunteer survivors. A back-to-school program helps children treated for cancer transition back to school. The Society also provides financial assistance to patients with significant financial need and offers an insurance co-pay assistance program. The Society's Web site - www.LLS.org - is the definitive resource for information about blood cancers, and its Information Resource Center (IRC) is a call center staffed by master's level social workers, nurses and health educators who provide information, support and resources to patients and their families and caregivers. IRC information specialists are available at (800) 955-4572, Monday through Friday, 9 a.m. to 6 p.m. ET. About The Leukemia & Lymphoma Society The Society, headquartered in White Plains, NY, with 68 chapters in the United States and Canada, is the world's largest voluntary health organization dedicated to funding blood cancer research and providing education and patient services. The Society's mission: Cure leukemia, lymphoma, Hodgkin's disease and myeloma, and improve the quality of life of patients and their families. Since its founding in 1949, the Society has invested more than $550 million in research specifically targeting leukemia, lymphoma and myeloma. Last year alone, the Society made 4.2 million contacts with patients, caregivers and healthcare professionals.

Video and thoughts....

Fri, 31 Aug 2007 01:00:57 GMT

I was searching for a video today.
I came across a video from the Uk.
From a group Cuties The Cure.
So its to is about leukemia and lymphoma.
But has a very poignant message.
I have written to those who made the video as they have a myspace as well.
But they are on hiatius so..haven't heard back.
I guess for me why I really want to do Light The Night Walk is
for the Kids.
As I look at my Granddaughter I want this disease cured for her generation.
The Society is working diligently towards this!
Please help me towards my goal.LIGHT THE NIGHT WALK
click on Kerry and it goes directly to my site.
I love this video. Its the meaning of fighting like a champion...believing in ourself.
Always, Hope

I am challenging myself...as well as others.

Fri, 17 Aug 2007 16:09:53 GMT

I am writing this today as a challenge to myself. I come here with my pen name...as Hope. That was given to me far before I had cancer and many say now..when I speak about lymphoma I am their hope and mentor. So that has stuck as I write this blog I countinue to use it.
Today I come clean...My name is Kerry as some of you know..My husbands name is Roy. There are days that with out him I do not know where I would be. Together we are giving you all a challenge. Sept 28, 2007, we have decided in commeration with my 10th anniversary of being dxed with Non Hodgkins Lymphoma. Its our turn to give give back to those who gave us so much. The Leukemia Lymphoma Society, Michigan Chapter.

IT was only 20 years ago that a child was diagnosed with leukemia was given a mere chance of only 5% to live. Today the survival rates have climbed to nearly 80%. However the fact remains that leukemia takes more childrens lives than any other disease and stikes ten times more adults then children. We would love to be a part of changing that and you can help.

My Team and I are asking for the support of family members , friends and business associates to help us reach our goal.( that figure has not yet been determined so futher will be given about) This goal is very important to us as well. These funds will go towards the Society's mission to cure leukemias, lymphomas and myelomas all blood cancers. As well to improve the lifes of patients and their families.

I encourage all of you to support to this great cause. You may visit the Leukemia Lymphoma Society web site. Listed on the left side bar. If you prefer you may visit our Web site:Light the Night Walk

Also if you click on my name on the right, top of the list and it will take you to my personal page.

Together we can make a difference in the lives of patients who suffer from these life threatening diseases.

Thanks you for your support and generosity .

Warm Regards Kerry and Roy.
ALWAYS HOPE!!!

Just a Fyi

Mon, 06 Nov 2006 03:21:28 GMT

*Non-Hodgkin's lymphoma is the sixth most common cancer and sixth leading cause of death among cancer in the Unites States. More than 300,000 Americans suffer from the illness, with 55,000 new cases diagnosed annually. Although the cause of it is unknown, there are some risk factors that may contribute to the development of it. These include exposure to certain chemicals, such as pesticides and herbicides, infection with certain viruses, such as Epstein-Barr virus, and a weakened immune system, including those with HIV or who have received an organ transplant*

I read two articles one stated its the fifth most common cancer in the United States.
Sixth for Men and Fifth when it comes to woman. The estimation of the 300,000 living with this cancer was pretty common through out all the reading I did today.
However the American Cancer Society estimates for 2006 newly diagnoised this year will top over 58,000. The scarey thing is the death rate due to it.

I am really not in to stats...But I put them here to make others out there aware.
Non Hodgkins lymphoma is a branch of diseases about 100 cells which are classified as NHL. So many variables. Hodgkins lymphoma is one cell type only and normally in adolescents under 20
But the really sickening thing is the stats in very young children that are diagniosed.
12,156 is one number I kept coming up with . Far to high in my mind and heart.

Nhl since 1970 has double in cases however since the late 1990s has slown some due to better treatments and more knowledge in the medical community.

I have listed on the left in the my list the Leukemia Lymphoma Society. This a great place to read up and find about about NHL and get some understanding.
I have friend with lung ,breast , prostate , colon and melanoma. All of which are all out there, talked about and thats great.
But I for one want to start a Green Ribbon Campaign. I have a great concern that not enough people are aware that this cancer can affect you, me and our kids.
That to me is scary this one knows no boundries folks age wise.
So that's what I am fighting for in hopes one day there is no trace of this left.

My Grandfather had Nhl as well and my Uncle a cancer related to it.
Then Me. Thats three generations right there. One was in his 80's one in his early 60's and then I was 42 when I was diagnoised..However that was in 97 and my white counts were off for five years prior.. I wouldn't have been treated any differently however then what I was.

So I am just here to say please be AWARE that this cancer is out there and needs to be talked about...Educate yourself with the info I have listed.
I am no doctor but education is power in so many ways.

One year ago I started this space in hopes to just journal my thoughts. Hoping that I could maybe help and possibily educate others as well.
I am truely one of the lucky ones ..even with everything happening.

Have a great night everyone.
alway. Hope

Hmmm

Wed, 16 Aug 2006 13:56:16 GMT

Well interesting thought a while back I think I dicussed terminal and what it means..I suppose because I stated stable..and in remission..There is a misconception that things are all hunky dorey.
Lymphoma's to most are a cancer many no nothing about. To forms one is Hodgkins which is one cell type. And Non Hodgkins which of their are thirty over thirty different forms.
Both of which are blood cancers.
Its all pretty confussing, but there are 4 stages of it. Of which I had a stage 4.
And there are four grades of which when first dxed I was considered Highly aggressive due to
bone marrow involvement. Because it was mixed cell that is a whole new ball game..Kick the butt on the aggressive cell called Mantle and pray the others follow suit. Or bone marrow transplant would be done. Mantle cell always resides in the bone marrow..and aggressive treatment is the only way to kick its behind.
By no means is this a easy feat and by no means am I cured...those of us who are terminal.. are extremely lucky to get Stable and remission. I never have been in a full remission so from 97 to 2001 ..was a rough period. And stable I will take it..But I know after three times it can come back. Due to it being one of the most chronic of all cancers out there.
Stable is a great however..it doesn't go with out issues that need addressing daily. One could hope it would never come back but I can't do it..Its reality I can accept that ..and will deal with it does..But by no means...am I free of the things its left me with or that I will have to deal with in the future. I deal with it daily and what its given to me.
I think anyone who does read here...should read my whole story of my fight. I chose to live life daily..out here in blogsphere...but its not easy most days.
One thing ...In 1997 I was given a gift...I had one lousy doctor..who gave me three months to live..That was surreal and untill some one tells you this...understanding it ..Is a real tough deal..
As for hearing the words terminal..it means is always with you ....always.
But the gift given I had a wonderful new Oncologist ..Dr. OBryan..who was a older man. But a specialist in lymphoma and leukemia diseases...What I am going to say here...changed my life.
He gave me all the info...but after terminal ..he told me lets treat this as the chronic disease it is..and it will be much easier. I kinda looked at h im trying to take this all in..But something about
those words changed my thought pattern about things..And the next thing was And pray for me that God can give me the knowledge that I can help you. With those words I was in the right place.
So this is why I can sit here and have a good outlook even ..when I know I am up shits creek and paddling with my hands..verses the paddle that is missing.
There are very valid concerns about the quality of life that I want to life with it..and its a day to day thing.
I can't spit out the words I had cancer...thats not the case with terminal things.. All I can say is I have cancer it makes its more doable...daily.

STem Cells and the White House

Tue, 18 Jul 2006 14:10:06 GMT

Today I am a bit miffed with the White House . I turned off CNN yesterday cause it made me sick.

These discussions have been going on since 1980. Fundraising discussions in 1993. And the Senator Arlen Spector R_PA.brought together the first Congessional Hearing for Stem Cell Research in 1998.

Stem Cell research to some might mean nothing but to those of us with critical illnesses and diseases it means hope. Hope that some day these nasty diseases might be eradicated and cured. In hopes our children won't ever have to deal with them. Well worth the research to me
We are talking about Cancers, Diabetes, Parkensons,Alzheimers, Huntingtons, and what about Ms and those with Spinal Injuries.

This morning I was taking my stroll around the net per usual reading and what I have to say is this about this issue.

* Those who can help should help ..those of who can or maybe helped by such research in the future to pursue every possible avenue of potential treatments and cures for serious diseases!*

This what the Administration should be thinking right now ..not this reterick that is going on. This about life and those of us fighting for it daily.

Its not about the embyros at all they are dead...and I respect pro life all of this as well. Its not about Religion...Its about helping those in need.

Right now I am so furious..This isn't about that at all.

Stem Cell Reseach is needed in this country..its cutting edge medicine that I believe will help many.

Those of us out here living with cancer..and other things..Know others and there are stories that surface all the time.

I know of one family...Who had a son who had leukemia..a deadly form of it. The parents at this time were also expecting a baby. Doctors told them..lets look at the core blood which is high in stem cells when the Baby is born. There was not donor for their son ..what would you do. The baby was a match for the brother who had no other living donor for transplant Today this boy is a healthy 12yr old boy no signs of cancer.

Stem Cell are already being used..just in different ways. What about people out there saving core blood and spending a great deal of money to do so..Just in case a family member is ill.

I have seen and know to much not know the importance of STem Cell Research. Its vitally important for this Country as a whole.

It inferiates me.. is always about what the Mortality Rates are here in this country to cancer and other diseases. Its always about death..

When it should be about helping us out here who are living. There are many out here living surviving and triving who need the support of this Administration on this Research.

Right now the veto is just outragous . and I belive its polically stupid to debate on the this issue any further.

Just my opinion.

Thats my food for thought for today.

just a foot note.
I have fired off an email to my Senator on this.
Also if your remember the Bush and Kerry debates..where Kerry endorsed Dana and Christoper Reeves both on Research.
Also more info on stem cells can be found at
http://stemcells.nih.gov/info/basic/
All info there is curent info..as to what Stem Cell are and their Potential.. Might Enlighten some who are are not sure what a stem cell is or can do.

Anyone else having trouble with editing or pulling up statistics?

This a new mission of mine.

Wed, 14 Jun 2006 21:09:51 GMT

Okay so I am wondering what the heck supplemental income means. Or when you are told your disabled..Why the persons your living with income matters more then you do.
So this is a huge vent on the behalf of other woman who stay home raise families while in treatment for illness such as cancer and other disabling illnesses.
Over the past nine years ...I was told I was not egiliable for disability..due to not having enough credits in a ten year period and working only part time. In essance staying home and raising my family while ill..Was not the right thing by the states rules.
So as it sits.. I still have a disability cancer and still not working due to the issues brought to me by it.
And I need 11 credits to get it. For full disablity. Which that is the plan now.
So enter in SSI...which is also for disabled people. HUH!
Not for me ..because I am married although considered medically disabled..due to my cancer. I still am considered to have his income..Which is to high..and even if he retired to high.
They state. that it doesn't go by assests which is crap as for the questions I was asked per phone call. It does.
I am really not a happy camper.
So in other words if you have cancer..reguardless you can't get
Disablity at all less you have 40 credits in the state of Michigan. IF you raise your family and don't work Ladies.. you get nothing and have restart gainful employment and work so many credits in a 10 year period
I was basically told to get part time work and to earn my 4 credits per year.to make up the 11 I am missing. Then apply for .SSDisablity when I do this.
As for SSI its out for me..We make to much.
Not me WE!!!
So in other words..a person I use to work with who was a drug addict could get SSI..but I can't.
Where is the justice in that??
So as of right now...I am looking for someone who specializes the laws..that pertain to disabilities such as cancer and things related to it.
I am doing my homework on this one.. I just think something is wrong in this system.
The thing is reguardless of cancer I decided to do my job as a parent ..cancer or not. And in essance as one lawyer said today..Your taking a huge screwing for staying home.
Ironically I was in treatment and that is the reason I stayed home as well which is secondary..
So go figure.
So I got a lot of homework to do on this issue not taking it laying down. and made a call to my congressman.
There are a lot of younger women dealing with these same issues out there.. I am 50 and was 42 when we started to deal with this...The thing is I was never told they SSI exhisited by the Disability People..Now with kids.still home then ,what is up with that? Luckily, I was smart I have oll my old info...from when I applied.
So thats my vent for today..hopefully the week and month.
Its forsure not a dead issue.
Just so you guys know ...I don't see me as disabled but by the states standards my illness is listed as such..
I hate the word disabled...cause it sounds negitive as heck.
But the fact is ... It can do just that.
So I don't know what the they are thinking or maybe they are hoping I will just go away disappear and not stick to it this go around ..
HUH!!
Anyway ..looks like I am not going anywhere at this point!
I am here to stay and fight for whats right here.
Its really not the money here.. Its to make sure the its about the person who has the disability no one else.

Great day here in Michigan...Blue skys and Sunshine..Geesh if everyday could be like this it would be great. I could take it :)

Say a little pray for my Sons girlfriend Jess..Today she has a brain MRI today. Recheck on a surgery a few years ago.
So praying that all goes well to.

Well I need to get off of here and do a few things. I feel swamped today to. But even with that every day is a BONUS!!
So I can't even complain on being swamped.

Hugs all around....always Hope

The importance of getting the word out.

Fri, 26 May 2006 14:37:29 GMT

Today I was working on some advocacy for Non hodgkins lymphoma.
The current statistic of those living with this cancer are staggering.
The words are key here *Living with it.*
Here it is over 500,000 Americans today are living with this disease.
Amazingly in 2006, 58,870 new cases have been reported and 18,840 will die..or more.
So here it is Non hodgkins lymphoma What is it you might say ?
Here it is: There are over 30 subtypes of NHL. Five types are Hodgkins lymphoma . The other 25 sub types are Non hodgkins lymphoma.. Lymphoma is the most common blood cancer in 2006 and the third most common cancer in childhood.
Nhl is not a single disease but rather a group of closely related a cancers which affect the lymphatic system, which is part of the immune system.
The type I have is the most common type B Cell and the better of the two to have. The other is T.cell.
Nhl can start in the lymph nodes...or lymphatic organ such as the speen stomach of intestines. Since lymphocytes *white blood cells.* can circulate through out the whole body through the lymphatic vessles and blood stream, lymphocytes can go anywhere in the body. Which means it can go anywhere at anytime.
While some lymphomas are localized to one area.. most are in other parts of the body at time of diagnoises.
The cause is unknown
Warning signs: and remember most who have these it may not be lymphoma..might be something common..So see a doctor that is important.
Signs: chills , swelling in the lymph nodes that persists,fever , night sweats( aka not hot flashes..but having to get up and change your clothing and beding might qualify you) lack of energy( bone tired..can't regroup with rest) , weight loss and unexplained itching.( with no explanation.)

With this I have to say one other thing..When you have a physical with your doc...Make sure that you talk to them about your blood work. Learn how to read about your CBC:s So you understand what they are and why they do them.
Although many people are watch and wait with lymphomas..and recieve no treatment. So such as myself have had extensive treatment.
I excercise this about the CBC's because Mine white count was low for 6 years prior to my dx. My oncologist informed me that not many primary doctors watch its close enough or take fatigue and lose of energy in younger woman perticually in there 4os as much to worry about. When in fact it should we watched closer.
So guys in essence I was diagnoised in Sept of 1997 had stage 4 and disease that needed treatment. and in 1991 changes were showing for in- active disease.
So its very important to ask about the importance of your blood work up when you have a check up.
My form of lymphoma is not curable but the prognois right now is good. I have met others who have lived 20 years with it and I am half way there.
But it not being curable bugs me...and the rath of it is wicked.
Thats why I want the word out what is and the signs of it..If you get any of them..please get checked out. Ask your doctor to give you a good check up including blood work.
This is my forum to with what I will ..So this is it..My mission to get the word out to ever reads this.

Just a shout out..of Thanks and FYI

Tue, 09 May 2006 14:20:12 GMT

Usually I don't put a lot here about about my Lymphoma experience but one organization who supported me in my fight. Was the Lymphoma Research Foundation. The helped educate me and support me in my needs when first diagnoised in Sept of 97. It was through them I gained so much.
In 1998 I also through my art was able to give back..in having art work published as notecards with three other artists.
It was a pretty neat thing..all funds made going back to the LRF and to help others.
April 29th the Michigan Chapter of LFR held there first Lymphomathon..Though I was unable to participate..My heart was there with the Michgan group and my online support group from Michigan.
This group is taking the Steps for the Cure.
This event was a smashing success.
$36,000.OO was raised.
And funds still coming in.
I know this organization very well..All funding is raised with the mission of erradicating Lymphmoma & serving those touched by this disease..both patients and families as well.
I have it listed here( to the right) because I know the good that has come to be from them.
I am sending a shout out to Milt who is in my book tops..He is the one who did a ton of work to help others..and get this off the ground...
Lots of Kudos go out to the 200 Walkers who took the time to step up to the challege to help.
Just so everyone knows this..Back when I was first dxed..( diagnoised) I was told I needed tradional treatment which was just a mind bender. I called the LRF...who gave me options. I could take back to the doctors so I had a choice in the matter. Although the chemo I took was also grueling and thirty infussions in a six month period ..the big guns are still in reserve when I need them. Also in the research arena. Things have changed so much for those with my form of lymphoma..
That we need LRF around to make sure we know whats new effective treatment wise..This doesn't just mean chemos but newer monoclonal drugs and new treatments out there used in conjuction with or with out chemo therapy.
The things is with any for of cancer its felt we lose control. Lymphoma is no different.
I want others out there to know there are people out there who whole the key to educating us..so we can make some educated choices.
The thing is I have found that when I take info back to my Doc and talk to them, They in turn help me make more informed choices as well.
Education is the key here folks..IT gives us our CONTROL back.
So if you need any help let me know hopefully I can point you in the direction to find it...Check out the list for links.
I have also listed Nhl Cyber Family there for support as well as information put out by this Site.