Good news and juicy marrow.
OK. Phase 1 is complete. My PET scan shows that the cancer has shrunk to the point where it is almost invisible. So, we are on to phase 2, which is really just preparation for phase 3.
Phase 2: Mobilization Chemo
Dr. Ahmed is giving me a nice long break from chemo. My last was on Dec 13,14, and 15. The mobilization chemo will not be until Jan 23,24,25. Why such a long wait? Because he wants my system to completely recover so that my marrow is "nice and juicy". I swear I'm not making that up. His words exactly.
The mobilization chemo is actually a combo of two chemos I had before. Cytoxan (which was the C in CHOP.) and VP-16 (which was the E in ICE. I know...not an E. Chemo is wacky that way.) After hearing that it was only two drugs and that I had had them both before I thought this wouldnt be so bad. I really need to stop jumping to conclusions. He told me I would have to take Mesnex again. (For those of you who don't recall I had to take this so that the I of ICE didn't eat through soft tissue. It is apparently very fond of the bladder.) But knowing that I wasn't getting the chemo that required me to use the mesnex last time I was a little confused. Turns out the mobilization chemo is going to give me the cytoxan and VP-16 in much higher doses than last time. It dawned on me at that moment that this is going to suck. Yup. This is going to absoulutly suck.
Anyway, the point of this chemo is to supress bone marrow, so that when I start to give myself the nupragin injections, it will spit out stem cells instead of red cells, white cells or platlets. Kind of like setting it back to default settings. So, I will give my self nupragin shots for 2 weeks or so, and having my blood tested every few days to see what my counts are like. The rest of the dates I give are best guess. It all depends on how I respond.
We figure that I will have a stem cell collection on Feb 6. Right before this I will have another catheter put in my neck. This time with an in and out line. It could take one to three days to harvest the number of stem cells that I will need later on. But once they are all collected, phase 2 will be complete.
Phase 3: which is the hospitalization and BEAM chemo will most likely happen on Feb 20th. They want to give me another break to make sure my body has recovered sufficently from the Mobilization Chemo. Then I will have 4 day of the BEAM which is (according to Dr. Ahmed) equivalent to 4 months of chemo. THis will destroy my immune system as well as some red blood cells and all the platlets. They will then give me back my stem cells and they will get to work on repairing the damage from the BEAM. And hopefully three weeks later, March 13, I will be out and working on phase 4: radiation.
So, that's pretty much that schedule. Katrina has reminded me to tell you all that even though this sounds horrible, this is good news. I am responding well to the chemo and can now move on the next step of Fred's destruction. Not to mention I get all these lovely breaks in between. So, start thinking of something I can do while on the break before I go into the hospital. (Jules- Brendan has a good idea. Vegas!) That's it for now.
-Elizabeth
21 Comments:
I can't believe I am first twice - wow! Thinking of you. Get that marrow nice and juicy, and get the next step over with. We are with you!
Love to all,
janette
A day at a time!
Hang in there and love from Texas.
#2
Jacque
FOR SOMEONE WHO SUPPOSEDLY HAS CHEMO BRAIN, I THINK YOU DO A DARN GOOD JOB OF PROCESSING AND REMEMBERING WHAT THE DOCTOR TELLS YOU!! DO YOU THINK MARGARITAS MAKE THE MARROW JUICIER?! KARIN S.
Hey Liz,
that is a good news that the chemo worked and you can move to your next steps. I believe you will get through this and become even stronger person. in the spring you`ll be after everything and heading a new life. a better life with hard experiences. but I believe you will get out of this Fred shit for ever and get healthy again. love you Liz. thinking of you. and hey, Vegas is great idea. go for it.
good night
Luc
Dear Elizabeth,
I’m thinking of you every day and I’m happy to hear that it’s getting better ----you are so strong and your family is definitely a big help!!!!
In Germany it’s pretty rainy and already dark----quite boring!!! I have to go to school every day and teach some children (who aren’t in math at all!!!). A couple of weeks ago, I passed my second examination which I need in Germany to be a “real” teacher. That was very exhausting----I have to sleep a lot now...
Just before Christmas, I moved to Hamburg ---- they say Hamburg is “the most beautiful city of the world”. I’m not quite sure about that but I will find out (if it’s certain, you have to visit me here !!!!)
Elizabeth, I wish you and your family the very best for 2007!
Lot’s of love,
Sabine
Happy 2007, Liz!
I love a challenge, and here's a link to a site with info on retreats, many of them FREE:
http://planetcancer.org/html.
One camp we have been to several times, as both a patient family and as volunteers, and fully enjoyed, is Camp Sunshine on Sebago Lake in Maine (5 hour drive). They have several winter sessions; each family suite sleeps 6! Check it out:
Feb 9 - 11 Mixed Diagnosis
Feb 16 - 20 Oncology
Your family could volunteer, and make this happen quickly...believe me volunteering is lots of fun (and you can participate as you wish)...
Contact Laura Bean - tell her Karli sent you - www.campsunshine.org.
I continue to send you good wishes,
and miss you, KW
Yay! My sister is going into the hospital....er...(I don't care what you say, it STILL sounds strange...)
This camp thing sounds interesting, Elizabeth. Check it out and tell us what you think!
One thought, Elizabeth. How are you going to post to your blog when you are in the hospital. Maybe you won't even feel like it. You need to have a sarogate blogger, or a ghost blogger to keep us all up to date. On to the next step! You are closer to remission - Yes!!!
Love,
Amy
I am with Amy. Who will Blog when you are asleep? Deffinatly need a ghost writter.
Love ya
Lisa
hi liz
i just sent this whole page to you and pushed a button and poof it is gone i bet it went to new jersey that is how good i am with this computer oh well
i know you will be over with this soon for good this time. you are amazing you are strong and you have great faith family and friends what else do you need to get rid of fred we will be praying for you as always if you need anything have your mom email me i hope some one will blogg for you so i can keep up with you success god is blessing you
sue h
I have a serious question to ask. Back in October, I think, you said you'd decided to name your tumor Bob. So when did he become Fred once again? Don't get me wrong because I like Fred, Fred the plant and Fred and Ethel. Your Fred is a pain in the neck. Ha
I have a few more questions for you Liz-beth. Can I give you an injection over those two weeks? I think it would be a lot more fun to practice on you than an orange. I could really stick it to ya!
Next question...can you invite Dr. Ahmed to your Fred Is Dead party. I certainly would like to meet the doctor than cured you of your cancer. He must be awesome to put up with you all these months.
Last comment: I'm confused with phase 1, 2 & 3. I read it three times and still haven't gotten it in my head. Until we have the opportunity to walk in another person shoes we only get a small portion of the mental and physical pain that they must endure.I think Dr House from the TV series "House" and you share a commom bond, the pills and the mouth. If you think I'm picking on you, you're right, because if I didn't you might think you were really bad off. Another person in your blog said that by the time Spring arrives this will be behind you and you can get on with you life. Trust in God..you will live a long life and have to cover the gray hair like the rest of us.
Forgive me everyone for writing such a long comment. I don't write often but when I do, I tend to be wordy. Love you all and especially my little choir buddy, Liz.
Nel
That is excellent news about the progress of Phase 1! I agree with the poster who said you do a good job explaining what's going on.
That is excellent news about the progress of Phase 1! I agree with the poster who said you do a good job explaining what's going on.
Mmm. . . .bone marrow (channeling my inner Homer Simpson here). Well, I won't pretend to understand all the medical stuff, but I can say it sounds like you're heading down that long, annoying, filled with unpleasant chemo, but steady and sure road to recovery, remission and the end of Fred. And as for Vegas, having been there in February '04, I can say it's just the place to forget your troubles, have a great time, and put yourself in a bright cheery, neon frame of mind. Go for it!
Love,
Adam, Debbie & Lucy
Hallo Liz,
bitte lass Dir die mail von Katrina übersetzen:
Ich wünsche Dir alles gute bei Deiner Stammzellenentnahme. Luis hat das alles schon geschafft. Er hat mindestens 3.000.000 Stammzellen pro Kilogramm Körpergewicht gebraucht und hat innerhalb von 2 Stunden 12.000.000 Stammzellen pro KG/Körpergewicht gesammelt. Also, wenn so ein kleiner Kerl, soviele Zellen schafft, dann schaffst Du das auch. Ich hatte leider keine Zeit Deinen Blogg zu lesen, da wir sehr viele Untersuchungen haben und vor allem nicht oft zu hause sind. Wir gehen am Dienstag für die nächsten 6 - 7 Wochen ins Krankenhaus und Luis bekommt eine Therapie mit Radioaktivem Jod, dass seinen Tumor von innen heraus verstrahlen soll. Anschließend bekommt er eine hochdosis chemotherapie, die 7 Tage 24 Stunden pro Tag geht. Danach bekommt er seine Stammzellen und dann müssen wir warten, dass sein Knochenmark wieder anfängt zu arbeiten. Ich weiß also in etwa was auf Dich zukommt. Ich drück Dir sooooooooo fest die Daumen und hoffe, dass wir es gemeinsam schaffen. Wir denken alle an Euch und hoffen und beten mit Dir.
Halte durch und wenn Du alles geschafft hast, dann kommst Du uns besuchen und wir machen hier eine riesen Feier für die zwei tapferen Kämpfer, Luis und Dich
Alles Liebe Melanie
Elizabeth,
We (Donna and I and the kids),
have you in our prayers.
It sounds like you have a doctor and medical support team that's on top of what's happening. Stay strong and keep the fighting attitude to help your own cause.
I don't know exactly what "juicy" marrow is but think good thoughts about making tons of it.
All our best.
Bernie & Donna ( yeah, that's right ... your 28 and its OK to use first names.)
hey lady! might i ask where the ugly doll is among all the religious gifts? :-) this whole phase thing sounds so technical. good thing you are confident in understanding what's going on (even if we don't). it's scarier not to understand--the mind can fill in the gaps with some rather wretched thoughts. i wish DC were a more attractive place to go out of my own selfishness to hang with you, but I've stayed at Sebego Lake and it's awesome up there (at least in the summer). Enjoy your vacation!! Lots o' love and smiles to you... -Di
Glad to hear that your chemo is going as well as chemo can go. You're right - the next phases sound like they'll suck BUT they will heal you and in the end, it'll all be worth it. Wherever you decide to go, enjoy!
Sorry for the tardiness in translation...
Translation of Melanie's post
Hello Liz,
Katrina can translate the following for you:
Good luck with the stem cell transplant. Luis is through with that. He needed at least 3,000,000 stem cells per kilogram of body weight, and within 2 hours, he had collected 12,000,000 stem cells per KG of body weight. So if such a small guy can manage so many cells, then you will be able to as well! Unfortunately, I haven't had a lot of time to keep updated on your blog, mostly because we have been busy with so many check-ups and aren't at home very often. For the next 6-7 weeks we'll be going to the hospital on Tuesdays so Luis can get radioactive iodine, which should irradiate his tumor from the inside out. Finally, he will get a high-dosage chemo, which will be 24 hours/day, for 7 days. After that he will get his stem cells back and then we'll have to wait for his bone marrow to begin to work again. There are some similarities between your and Luis' treatments, so I can understand what you will be going through. I'm wishing you lots of luck and hope that we will all get through this together. We're all thinking of you (all) and hope and pray with you.
You can do it! And when you have beaten this, then you'll have to come visit and we'll throw a gigantic party for the two brave fighters, Luis and you.
All our love,
Melanie
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