1 year in remission!!!

Hello all! So as most of you know from facebook, I had my scans March 9th, and it was completely negative, making it a full year in remission. BUT, I had my post Allo vaccinations before I left NYC on Thursday, (5- 3 in one arm, 2 in the other) and I woke up Friday running terribly high fevers (highest got to 102.9), body aches, chills, the works. So, I have been taking Tylenol around the clock, and by last night, the Tylenol wasnt holding my fevers anymore. I thought this was probably just my immune system reacting to the vaccinations, but I took a look at my arm, and there is a red, hard, area about the size of a baseball spot on my arm that was very hot and painful. So, I called the docs on call in NYC and she was suspicious of cellulitis in my arm, since my fevers werent so low grade. So now, Im on antibiotics and it seems to be helping. Some of the redness is going away.

So, now Im completely and totally freaked out. I was planning on getting my feet back in the water and maybe start working again. But I just dont know if its a good idea. Have these vaccines screwed up my immune system? Why was I so suseptible to infection? Is my next scan going to show something because of these vaccines? Have they freaked my system out?

Im just reminded of laying in the hospital bed at Vanderbilt, fever ablazing, and thinking that was the beginning of the end. Fevers scare me to no end, and so does being sick. Ive been well for a year now,and then this happens. I know it seems insignificant to some of you, but I guess its some sort of PTSD. I have gone back and forth as to wether to fill out the application to my old job, or just wait. Wait for a little longer just to make sure everything is ok after this vaccination/cellulitis scare. I dont know. Im afraid of the cancer coming back again, and if I do go back to work, Ill be dropped from disability, and my insurance through the state, what will I do? This is my main concern about going back to work. I have to have money. Disability isnt much, but its something. I would probably have to go back through the same process that takes about 6 months to get your first check. My doctors want me to go back to work. I just dont know that Im ready.

So in the midst of wonderful news, some concern.

REbirthday tomorrow January 20th, #2!

So tomorrow January 20th, marks the 2 anniversary of my stem cell transplant. It was a terribly rough time, and 2 years ago I didnt think Id be typing about it today, and me seeing Skylar turn 3. So here is a photojournal of my transplant, my transformation to Katina 2.0 (my sister)


So we started out Katina receiving Neupogen shots to stimulae her bone marrow to make me some stem cells.

Katina all hooked up and making giving some stem cells!

Katina alittle chilly!

Our "sisters" willow angels.. a small token of thanks from ol' Kara!

There they are! Getting ready to go into their new home in my bone marrow!

Katina holding her cells, she made 6 million, and we only needed 2 million! Go Katina! And my momma in there too.

There they go!

Success!

So there you have it! After that was all downhill of course, having no white blood cell count for almost a week gave me fever spikes, random blood infections, infected access lines, HORRIBLE mouth sores, and terrible fatigue. But, Im here today to talk about it! And it all gets easier, if you take one day at a time.

So here we are today, living it up, after many relapses after transplant thanks to a miracle!

Merry Christmas!

Just wanted to let everyone know I had a clean scan in December! That makes remission about at 10 months now on no drugs at all! Miracle cure? I hope. Praying for continued remission. I also wanted to post this movie quote from Lord of the Rings: The Two Towers because I felt like this is how I felt when I was going through treatment and hard times...

FRODO: I can't do this.

SAM: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories Mr. Frodo. The ones that really mattered. Full of darkness and danger they were. and sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened.

But in the end, its only a passing thing, the shadow. Even darkness must pass. A new day will come. And when the sun shines, it will shine out the clearer.

Those were the stories that stayed with you. That meant something. Even if you were too small to understand why. But, I think Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of coming back only they didn't. They kept going. They were holding on to something.

FRODO: What were they holding on to, Sam?

SAM: That there's some good in this world Mr. Frodo. And its worth fighting for.



Happy New Year to everyone! Heath and happiness to all!

THANK YOU

I just checked my paypal and realized I had been getting donations without getting emails to thank people. I just wanted to say THANK YOU to everyone who has donated to my Lymphoma fund. It really helps with my travels to and from New York City, where I see Dr. O'Connor. God Bless you!

An update on me:
Ill be heading back to NYC tomorrow, to see Dr. O. I was having problems with the Belinostat and was receiving IV fluids everyday here in town, and my kidney function wasnt doing so well so I have been taken off the drug until I speak with the doc tomorrow. I have felt wonderful being off the drug, but unfortunantly, I have to take something or my lymphoma will grow back. I pray there is something else we can try! I just wanted to send a heartfelt thank you to everyone that has supported me through donations. :)

Belinostat so far

So, my scan showed that my tumor had actually shrunk since my last treatment before starting Belinostat, and was still stable and just on my adrenal gland. The Belinostat has been really hard on my GI tract, vomiting, nausea, and tons of diarrhea. Lomotil and Immodium has no effect, so Im just trying to keep some moistness in my body. I feel like crap, and hope this gets better. I may have to have a dose reduction, as now Im taking 2000mg. But hopefully the side effects are just my body reacting to the drug. I was warned before starting this drug that I was be the pooping princess. So no more scans til March to see how the drug is working. So thats all I have right now!

Its back

I guess most of you know from my facebook and webmagic that the lymphoma is back. Crappy diffuse large b cell again. Ill be starting a new drug called Belinostat which is another HDAC inhibitor like SAHA was. I wonder what would happen if you took both of them? Hmm.. That would be an interesting question for Dr. O. Im sure I would have no white count if that happened. I know none of us really know when we are going to leave this earth, but Im getting really tired of having this uncertainty of even walking my daughter to kindergarten on her first day. (Shes 2) What am I going to miss because of this crap? What point in my life did I do whatever I did to make my cells start going psycho? Im having a pity potty day. I mean, how many drugs are there left? I know they come out with drugs every month, but when are they just going to stop working all together? I guess I dont want to know, but I really dont want it to be any time soon. I always thought I would die an old woman with grandchildren, and maybe great grandchildren. But I know, that wont happen. = (

Biopsy tomorrow

For those of you who arent on facebook, I thought Id post an update. My adrenal mass that was found on my previous pet scan 4 weeks ago has grown 6mm. It is a small mass, but I have been taken off my trial drugs until the pathology has come back. The SUV of this lesion was 31.9, so Im pretty sure we are looking at relapse. So, Dr. O hasnt given me a game plan of whats next so we'll see. Im pretty upset that the trial drug has only worked for about 6 months. I think the size of the lesion now is about 2.8cm. I havent been having any other symptoms, except extreme anxiety. So Dr O doesnt know what this is, but he doesnt think its lymphoma, but Ive been told that before. So Im not very trusting. Anyways, I thought Id let you know whats going on in my world... I guess Im just going to have to get used to managing this disease instead of curing it. That pisses me off. I hope everyone else is doing well. Love you guys!