So, for those of you who are still checking this thing....I had my CT scan today.
All is not well. As I was waiting for Dr. Ahmed, a fellow was taking notes on my last six weeks. We had never met before so I showed her where Fred used to be. As I'm pushing down on the spot...lo and behold I feel Fred. That's right. His corpse has been reanimated and is back to cause more problems.
Fred II: Revenge of Zombie Fred.
Anyway there is a lot of stuff to get through so I'll move quickly. Pay attention and keep your hands and arms inside the blogs.
1. Fred and Bob (the chest hot spot) have both grown significantly in the past six weeks, to such an extent that there was no need for a biopsy. Dr. Ahmed saw the scans and declared Fred resurected.
2. I start Chemo tomorrow. Not CHOP. If one chemo regiment fails to do the job, protocol requires a switch. I will be starting ICE. Combine that with the retuxin and you get RICE. ( I know, funny, yet that is what they call it.)
3. I will go through 4 phases of treatment. Are they actually four different phases...I don't know. It's just how I've broken it down in my head
Phase 1: Chemo : RICE - this is done over three days.
Friday - The R,I, &E from RICE along with several other drugs to counteract sideeffects so that the chemo doesn't kill me.
Monday - The I and E from RICE along with several other drugs......
Wednesday - The C and E from RICE along with several other drugss...... You get the idea.
After the chemo I have seven days of injecting myself with a drug to regrow bone marrow.Then I wait three weeks and repeat the first part of phase 1 over again. In other words, 2 cycles of RICE.
I then wait two weeks and get a PET scan.
I then wait two weeks and get a PET scan.
IF the RICE has done it's job, we move onto phase 2. (If it hasn't we move onto a contingoncy plan that has not yet been devised. )
Phase 2: If the PET scan shows what we hope then I will recieve a bombardment chemo.
That isn't its real name. It is just what I am calling it in my head. They will give me a chemo designed to shut down my bone morrow...sounds bad right...wait for it...wait...only to start it back up again with days upon days of the self done shot that regrows bone marrow. This apperently will dump a whole lot of stem cells into my bloodstream.
That isn't its real name. It is just what I am calling it in my head. They will give me a chemo designed to shut down my bone morrow...sounds bad right...wait for it...wait...only to start it back up again with days upon days of the self done shot that regrows bone marrow. This apperently will dump a whole lot of stem cells into my bloodstream.
In about two weeks time these little stem cells will be ripe for harvest. At which point I go back to the hospital, have another catheter inserted into my neck and then I am off to what I am fondly calling the vampire room where they will suck out my blood, whirl it around, take out the stem cells and shoot the rest back into me. We will do this until they get 2 million stem cells. It might take one day...it might take four. But they want 2 million.
Now I asked why they couldn't just use my port...apparently the injector that puts my blood back is high pressured and has been known to blow plastic ports to pieces. So, I get the catheters, and when the're done drinking my blood I get them removed.
Phase 3: Once again, provided that the previous phase went off with out a hitch, I will be thrown back into the hospital. Once there I will recieve intensive chemo. (Yes...another one for these keeping count this will be three for this course of treatment,...four overall.) I don't remember the name of this one, but I have it written down and I'll let you know. Dr. Ahmed described it as taking four months worth of chemo, and doing it in four days. (That just doesn't sound like fun)When done, they will give me back the stem cells they stole and keep me for two and half weeks. For around a total of 3 weeks in the hospital all in all.
They want to keep me in a sterile environment, make sure my body starts working on its own again, and make sure that my bone morrow starts producing its own cells. Needless to say, for most of phase 2 and all of phase 3 I will have a non-existant immune system.
Phase 4: Ahh, the easy one. Radiation.
So there you have it, the four phases of my new treatment. This should put me done somewhere in february or march. And the entire thing will be riddled with tests and scans. Ok, I'm wiped so I'm going to bed. long day tomorrow and all. Later. - Elizabeth
posted by ejbauerlein @ 9:00 PM
40 comments
40 Comments:
They say that half the battle with diseases like this are in the patient's attitude AND we ALL know you've got some EJ attitude. Keep it!! Be strong! Believe in Dr. Ahmed, and use your faith, and his knowledge to kick this whole CRAPPY thing called cancer! We love you very much and admire your strength and courage!
Good luck today Elizabeth. We love you and continue to be with you through everything; you are not alone. To prove it, I'll even drink grape juice with you tomorrow night!
Kick its butt.
Elizabeth,
Use all your strength, courage, faith, and love -- and kick the crap out of this thing! You can do it and don't settle for anything less!! Love, Josh Tuzman
Elizabeth -
We know that "With God ALL things are possible". Can you imagine not having faith during times of trial? Know that you are in the thoughts and prayers of us all.We are confident that the Great Physician will kick the hell out of Fred - oops, is that being sacreligious?
Love,
Maria H
Elizabeth,
I know you are stronger than "Fred" is and that in the end you will win! Stay strong.
Love Lisa
We all love you Elizabeth. This is another hurdle you have to jump over so keep your strength up! You have tremendous support of family and friends and you will overcome all this crap.
Love always
John
You are in good hands and we are all here for you! I can't even begin to tell you how sucky this makes me feel. But wait... it's all about YOU! That's the way it's going to stay until you kick Bob to the curb! It's all about you, Baby! Time to start the relaxing whirlpools and steams.
Love,
Amy
Hi Liz,
No, Fred is dead, this is just his ugly brother. You will kick his butt just like you did Fred!
And Bob, I think he is like those neighbors who always try and go one-up on anything you do, but are really just wimps anyway and don't amount to much!
You are WOMAN! You will prevail!
Love,
Another member of your cheering section.
Just as an aside, John's aunt also went to Dr. Ahmed an did the same course of treatment. She was stage 4 Non-Hodgekins and has now been in remission for over 5 years. You are strong, it will suck (literally), but you will be even stronger in the end. Remember, Dr. Ahmed knows what he's doing!
Elizabeth, I can't tell you how bad I feel about your news. But what I can tell you is that your beautiful smile and personality make people feel good just seeing you. These also will be your "weapon" against the "foe", as well as all of the prayers of the people who love you.
Carol C.
Hi Elizabeth - You surely know that your church community is with you with our prayers and whatever other support you might need. You've got the best family, the best doctor, the best treatment, the best attitude ... and the best and most loving God. Come Easter, we'll be celebrating Christ's Resurrection and Fred's final demise. Pastor
Elizabeth - we are all numb from the news. Your strong faith and the strength from your family and friends will pull you through this. You and your family are in our thoughts and prayers.
Love,
Kathy, Elinor, and Matthew
Hi Elizabeth,
We'll be praying for you to make a quick and full recovery. Everyone's prayers for healing were answered the first time, and we know they'll be answered again.
Love,
Adam, Debbie & Lucy
Just know that you have many, many people who are thinking of you, who love you and who are sending you all their positive energy and paryers. Me included!! I have even recruited the Captian, and he is ready and waiting to help you celebrate when you defeat this thing!
Alex
Hello, Elizabeth,
Paul and I are so very sorry you have to go through all of this. It is heart renching to think about. We are praying for all of this to pay off with a complete cure. We are also praying that you will be able to take one day at a time...sometimes one hour at a time and hold on to the love of your family, friends and the love of Jesus Christ. You are a special child of God. We are all with you and Paul and I know the power of prayer is, indeed, miraculous. Yours in love, Paul and Lorraine Miller
Keep up the Fight...You will win the battle!!! Fred and Bob haven't got a chance against your strength combined with the prayers of your family and friends. You will beat these ugly monsters and rally back stronger than ever. We are here for you for whatever you need to prevail!!!
Love, The Scherer Family
hi elizabeth
i just read your blog and i am so sorry it came back but with your strenght you will beat this. if there is anything i can do for you and your family just let me know. i know you feel this treatment will seem forever but the time will go fast and you will beat this . you have faith and strength and a lot of love going for you and most loving family and friends and we are all pulling for you
you beat fred once and now we will erase him for good i will be saying prayers for you and your family and with GODS strength you can do anything
god is blessing you
sue h
Here is what MayoClinic.com has to say about ... "Stem-cell transplantation. Lymphomas tend to be sensitive to chemotherapy. However, if lymphoma recurs, higher doses of chemotherapy may be necessary to treat the disease. The amount of chemotherapy that can be given is limited because of the damage chemotherapy does to your bone marrow. In order to avoid this serious side effect, healthy stem cells — those capable of producing new cells — are taken from your blood or bone marrow and frozen. After you undergo very high doses of chemotherapy to kill the lymphoma, the healthy stem cells are thawed and injected back into your body. This treatment is used primarily to treat intermediate- or high-grade lymphomas that relapse after initial, successful treatment."
See http://www.mayoclinic.com/health/non-hodgkins-lymphoma/DS00350/DSECTION=7
Our prayers are with you always.
Chris, Kathie & Samantha de G
P.S. - "Fred" is too nice a name. Perhaps his real name is Mr. Hyde? After all, he is evil and did hide for a while, even from the doctor? Regardless, because now he's gettin' a real Texas whoopin'!
Hey, Liz,
Although we can't believe he would dare return...know that you are in our prayers. You will kick him again...this time your strenth will overpower him...
We love you.
Aunt Mil, SC
Hey EJ --
I know it's unfair, but be positive, positive you will kick Fred's butt! He may not be dead yet, but he will be - imagine that, see it, it will happen!
And do you want white or purple grape juice with Katrina?
Health & blessings,
Susan
I KNOW YOU WILL BEAT THIS AGAIN BECAUSE YOU A STRONG PERSON. AND I WILL BE SAYING LOTS OF PRAYERS.
LOVE
MRS. MILLER
Elizabeth,
I only know you a little while and I can tell you are one strong and fiesty woman. The most important thing you can do is keep faith in God and he will help you get through this ordeal. You have alot of people praying for you and the voice of prayer is strong. Please know you are thought about everyday and prayed for by me. I am here if you need anything at all. God bless you always.
Laura C.
hi elizabeth,
i am rendered speechless with all that you so bravely face. i will tell you that your situation brought back to my mind a 'final 15' that i lead in san antonio and i wanted to share the Bible reference and the thought with you....
Bible reference Luke1:46-48
...in your baptism God says a big grace-filled YES to you in the midst of uncertainty, suffering, problems, and doubt. Close your eyes and imagine God saying to you...'YOU are loved-forever;You are my child-forever;I picked you-and i keep picking you, no matter who you think you are, what you do or haven't done,what others think of you or what you have to contend with. i am the one who made you. i see you through my SON, JESUS, who is good holy, blameless, and gives life. This is truth, always and forever." God says YES to us at the cross of JESUS. This is where God tears down and crosses the borders that create division and conflict within us, between each other and between ourselves and God. This is where we wake up and come to life in God's grace replying to God...'HERE I AM _ YOUR SERVANT...IMPERFECT...UNCERTAIN...and WOUNDED.."
I have felt so many times in recent months that I have been alone. I know people are there for me but I tend to forget that GOD sits next to me...thru it all and has His arm gently around me saying nothing but letting me know i am His. Peace to you my friend. And i pray daily that that arm around you gives you strenth in that knowledge.
Hang in there Elizabeth. You are an admirable person with a wonderful personality and spirit. Fred and Bob will never conquer that. Stay strong and keep up the courage. My prayers are with you.
Jennifer
A well-known local DJ in Rochester, Brother Wease, went through cancer treatment recently and was selling Lance-like bracelets to raise money for the cause. Being the rough-edged guy he was, they couldn't just read something like "Live Strong", they had to say "Kick Cancer's Ass!" You did it once, you know you can do it again! Can't wait for the opening of Fred's Dead the Sequel.
It sounds like it's going to be a long hard road, but you WILL win this battle.
Love & Hugs
Hey Elizabeth,
I f'in hate Fred. I hated him the first time and now I hate him even more. Too bad he didn't realize how strong you are the first time around, so you'll just have to kick his butt again!!!!!! And with the support of all your family and friends I know this will happen. Stay strong, think positive, and you shall overcome.
Love,
Lynda
Hi Liz,
Love from Aunt Mary and Uncle Charlie. WE are on our way home from Florida. Stopped at Aunt Millies and Uncle John's and wanted to let you know that we can't wait to give you a hug!!
Love, Aunt Mary & Uncle Charlie
So let's get a little humor into these comments, PLEASE. Those of you who know Elizabeth well, will appreciate this.... As we're leaving for chemo yesterday, she says "Mom, check out how many people left comments on my blog....All it took was for my CANCER to return". Aw, you gotta love her. And please, all of you, keep me in your thoughts also... Remember how the last go-round, she loved ranking on her mother?
Love you Elizabeth
PS There's nothing they can throw at us now, that we're not going to lick.
Hello Elizabeth,
I just wanted to let you know that even when Fred was dead we were always thinking of you. We will be sure to continue to keep you in our thoughts and prayers. I will tell Juliana she needs to say her prayers a little bit louder.
Love Always
The Viebrock's
You are a very strong young woman with a strong faith and a strong family supporting and loving you. Fred and Bob don't stand a chance. God Bless You Elizabeth.
Dear Elizabeth,
With your kick ass attitude and your family's love and support I have no doubt that you will overcome this. Be strong and keep the positive thoughts and smiles.
We will prayer for you!!!
The Finkelstein Family
Elizabeth,
I pray you keep up the wonderful attitude you have maintained through the previous chapter of Fred. You are a fantastic person, Elizabeth and a great example of strength. love you, Lois
Dear Elizabeth,
Wow, you do stay busy...Wed eve you're playing with a SMARTBoard, getting choir flyers ready, (when is that concert?) and the next, you're ICING it up! Bless you, and damn the cancer.
I will support you however you choose re this semester. You know we can do a medical withdrawl, and finish it all later. You also know we can finish this semester together by the new year, including visiting virtually or in person, etc. This is one effort where "you don't need to be physically present to win!"
Did I tell you that last week I started an online course to design a course to educate teachers how to instruct completely online? Do you know that with you as my inspiration, I now have a lot more to work on, sooner?
Perhaps this is a time where your family and friends can help serve as your translators - you talk, they listen and type...or I listen, and call each project complete with that experience. Please know that your classmates in both courses will help you out however you wish. We'll figure it out. Just let me know whether you prefer we correspond here or within our course (private email) or discussion board.
One day at a time, my friend.
Prof Karli
Dear Elizabeth,
Your attitude is wonderful and it's more than half the battle. We've only met a handful of times, I'm JoAnn Birgler's sister & Richard's sister in law. I'm also a 15 year survivor myself. When I was diagnosed, I met a girl with Non-Hodgkins and she is not only clean all these years, she has a beautiful family of her own! Keep up your spirit and positive attitude!! Knowledge is power and you certainly seem to have all that and more on your side. If your family is any sign of the strength and support you have (which of course they are) you have everything you need to beat this! God will watch over you and give you the power when you feel you need it most...if there is anything you need, or if you want to scream with someone who has been there...anytime, anytime you need it, just call! Gilda Radner said that cancer made her part of club that she rather not belong to...I would agree, but the members you meet in the club, they are kindred spirits...May God bless you Elizabeth and may the challenges you face prove to make you even more appreciative of all the wonderful years you have ahead!
You go girl!
Hey Liz,
I know it is a terrible news. You will get out of it. and now it will be forever. We still think of you and pray for you everyday.
Good luck tomorrow and see you in the morning in the car.
My parents and the whole slovak family is praying for you.
lucia
wow lizzie... look at all this support!!!
An alternative treatment:
Biological therapy
People with certain types of non-Hodgkin's lymphoma may have biological therapy. This type of treatment helps the immune system fight cancer.
Monoclonal antibodies are the type of biological therapy used for lymphoma. They are proteins made in the lab that can bind to cancer cells. They help the immune system kill lymphoma cells. Patients receive this treatment through a vein at the doctor's office, clinic, or hospital.
Flu-like symptoms such as fever, chills, headache, weakness, and nausea may occur. Most side effects are easy to treat. Rarely, a patient may have more serious side effects, such as breathing problems, low blood pressure, or severe skin rashes. Your doctor or nurse can tell you about the side effects that you can expect and how to manage them.
See http://www.medicinenet.com/non-hodgkins_lymphomas/page6.htm
A. Friend
Elizabeth,
It has been many years since I have seen you and you have obviously gone through alot. I can tell from the posts here that you have a great support group and a wonderful attitude.
Since moving away from New York, I have met many friends who have had their own cancer battles. I have also spent alot of time working with a local charity that gives support to cancer patients. All of the survivors I have had the pleasure to befriend have the same characteristicts that I can see in you (even in cyberspace). Great Support from family, friends, and church; Amazing determination; and a great sense of humor about it all.
We are praying for you down in Nashville!
Love
David Rhodes
hey cousin,
You were great today. I was amazed. I learned how to play pocker "or how to spell it" and you won all my money. get some good sleep and I`ll see you on wednesday.you will get through this and kick Freds ass for ever.
Luc
my parents and Robo are saing hello and are praing for you.
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