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!

MORE REMISSION!

Whose is still in remission? I AM I AM!!!!

REMISSION

I just wanted to let everyone know that as of the beginning of August, I have been in a complete remission! The trial drugs are working! Just to remind you, I am on Vorinostat and Niacinamide! Im sorry it has taken me a while to update my blog but I have been painting the town red!

Not much news

Everything seems to be going ok with the oral drug Vorinostat that Im taking. I dont know if its working or not, but I sure hope so! Ill have another scan at the beginning of August to see whats going on. The last scan I had showed 2 liver lesions. My lab work has been great. Im just hanging out with Skylar and being a mommy! Please say a prayer for our friends Adrienne and her mom Alison, Adrienne is in the hospital with some pain issues related to some new chemo, and my friend Hillary who has a scary new bump that is feared to be cancerous. So start that prayer train! I can also use some prayers as Ive been having some abdomen pain since starting this new drug. I hope its the tumor dying and not growing. Ill update when I have some new info!

Moving on to Dr. O'Connor

I havent updated in a while, since I thought this was sort of my dealings with transplant. But, unfortunantly, we learned my cancer had come back with avengence, in my spleen, liver, and several lymphnodes. I was told to go home and "get my affairs in order" Since that isnt an option, we went in search of the top doc in the country, if not the world on lymphoma, Dr. Owen O'Connor in NYC. Since my cancer has become resistant to chemo and my remissions are becoming shorter and shorter, its time to think outside the box. Besides cancer, Im otherwise healthy, so Im not going to go home and die.. sorry.. not my style. So I have began a drug trial using the drugs Vorinistat, which is approved by the FDA for Peripheral T cell lymphoma, and high dose Vitamin B12. Ive been on it for about a week and havent really had any side effects. Anyways, Skylar keeps me going, and I plan to dance at her wedding. Sorry for the lack of updates, Ive just been really pissed off my transplant didnt work.

Nearing day 100

well, its almost 100 days since I had my allo transplant with my sister as the donor. I have my PET/CT on Tuesday at 7am, so maybe wont have to wait for results. What will i do if it is positive? Theres always a 2nd transplant, but I dont think i have the strength to do another allo. Im so nervous, and scared that my life could, again, be turned upside down on Tuesday. I need some comforting thoughts. If all is clear, I can go back home to Knoxville.

My double vision is getting better, day by day, its starting to go away and just come when i am tired. I see the eye doctor this week to rule out GvHD of the eye, which is a routine test for exit transplant patient.

My mom has left to go back to Knoxville, and my stepmom Kathy is here and will take me home after I have been cleared. My mom goes back to work on May 1st. Its scary knowing Im going to be with Skylar by myself again with no help! Ive done it before, and I can do it again!!!