Another quick update..

It looks like Ill be going back to NYC for my week long visit on Jan 8th to Columbia/Presbyterian Hospital where my Dr. O is moving back to after a 3 year hiatus at NYU. I will also get my eye chemo right before I go in the hospital for high dose MTX with Leukovorin rescue, and intrathecal Ara C.. looks to be 6-8 doses.. so more treatment for the next 6-8 months to finish out the process, since we do it every 4 weeks. Its not looking like Im going to loose my hair, just maybe some thinning at most.  I feel pretty good! Had a visit with my ONC here in town, and all my blood counts and liver enzymes were all stable. Yay!  So, from now until Ive got to go back and put my boxing gloves back on Im going to eat, rest, and be merry. With my sweet Skylar pie!!!!

UPDATE 12/19

Hello everyone!

Just wanted everyone to know I made it home ok!  After long delay at the airport. Finally, my liver enzymes went back down to an acceptable discharge level.  My kidneys seemed to do well with the high dose methotrexate for the CNS prophylaxis. Got my mediport, I tell Skylar its my "button" I get my medicine through, and that sometimes mommy needs a tune up like a car does. I wasnt expecting to get a major OVERHAUL, while I was up there, but thats ok.

So Im also getting lipsomal Ara-C in my spinal fluid too, that bathes the brain and the spinal cord, again, further preventing any sort of Central Nervous system involvement. I will start eye treatments with Dr. Marr at Sloan Kettering within the next 3 or 4 weeks. Mmm hmm, injections of chemo in the eye! Sounds pleasant huh?  Ugh! 

So as far as most of the docs are concerned this is an isolated relapse, stage 1A. Which is good news, but since its a blood/lymph cancer we have to treat the whole body IE:Methotrexate, Ara C, etc. So I evidently had a few stragglers left behind from previously.  My bone marrow looked great, (they sucked some of that out too) So for the most part my Allo should be still working or Id have alot more disease at present.. is at least the way Im looking at it. 

So for now, Im going to enjoy family, friends, good food, and good times and celebrate our sweet Jesus's birth.

I will follow up with my trusty Dr. Eapen here in Knoxville for some lab work, and neupogen shots, but as far as side effects, the only thing that is bothering me is my back where I had my spinal tap plus chemo, and my bone marrow biopsy site.. but the Ibuprofen seems to be helping with that.  So out I go to go to the grocery store and get some food and other items to start wrapping gifts!

Merry Christmas, and Happy Holidays to all of my special friends!

NYU Langone Medical Center here I am!

Hey friends!

So, Im settled in my room here, and got my 1st and last bag of chemo (high dose Methotrexate) for this visit. Phew.. alittle bit of nausea but nothing too bad. Now we wait for my counts to drop, and then the havoc on my mucosa begins,,, HORRID mouthsores.. but maybe it will be better this time. I also start Leukovorin tonight to rescue my healthy cells for the chemo.. Im not sure the time frame on that.  Feeling well today! Hoping to get my port today, that was supposed to be put in on Friday.. but whatever, its ok. So Chad will be going home on Wednesday, and my sister will be coming up. Thats really all I have to report this morning!  More later!

More on relapse 2011...

Hi again,

I just wanted to give everyone an update on what the deal is. So the official biopsy will not be back until Tuesday, but the plan is to go ahead with treatment starting on Monday. Ill have a new port put in and have high dose Methotrexate for 5 days, and will stay in the hospital until its totally out of my system. I will also be receiving Methotrexate and Rituxan in my eye directly at some point, and maybe radiation to my left eye depending on what dr O, and Dr.Marr think.

So, my eye is feeling ok, just alittle sore and lots of blood still in it. Chad and I went walking around New York City today and had a pretty good time. Im missing my sweet Skylar terribly. I will be staying in NYU Hospital from Monday on, so feel free to send letters, etc. :)

Im feeling pretty depressed and defeated, but Ill get back on my feet here soon and get in fight mode. Just processing all this information is a lot.

Also, I hate to ask, but I must. We are hoping for some of our friends to donate some to the "transfer Kara to NYC Fund" so if you have any spare change, please donate through paypal on the front page of my blog. I know you guys will help :) I will have to come back to NYC for 6 months every 3 weeks for my week long stay in the hospital, and then Im sure Ill have to be up here for eye chemo also. So anything would help! Thank you so much!

I wish I had better news, I know many of you look to my blog for support and hope, but dont you worry, you'll have even more hope after I beat this again. :)

With Love, Kara

Relapse...2011

Hello all..

Im sitting in an NYC hotel healing from my eye biospy yesterday. I started getting blurry vision and floaters about 3 weeks ago, and didnt think anything of it. It wasnt getting any better so I went to the eye doctor and they were concerned it my be a relapse in my left eye. So, I hopped a flight to my doctor Oconnor, and saw Dr.Marr the eye doctor here, and he is 99.9% sure it is some lymphoma cells. I just wanted to update, but I will give a more detailed account and what the treatment will be when my eye stops being sore from having a huge needle stuck in it! Follow me on facebook for more up to date updates.

July 20th 2011 Scan results..

I just wanted to update all of my readers that my July 20th scans in NYC were clear! I have now been in remission for 1 year and 15 months! Rescan in November! Im praising the Lord!

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!