Still kickin'

Hello everyone!  I just wanted to let everyone know that my scans in March came back clear!  Next year I get to hear the elusive word "cure"! Can you believe it?!  My little girl Skylar, is now 6 and beautiful!  Im also ENGAGED! Im so excited and in love. Never give up hope.  HERES TO HOPE!

Long time!

Well, it sure has been a while since I updated! Since my last update I finished 6 cycles of high dose methotrexate, and 6 intraocular injections. My scans have been clean since then. A few days ago on September 26, was my 5 year mark. Of course I havent been in remission five years, but I have been lucky that the cancer has responded each time it has been treated.

Tomorrow is my little Skylar's 5th birthday. Shes my reason for surviving all this mayhem I have been through for sure.

In October, I will be heading back to NYC for scans, and to have my cataract removed, and also have my pupil repaired from damage done by the intraocular injections. Hoping for clean scans, easy surgery and SIGHT back!

Im looking forward to the holidays, and the beginning of a new year.  I hope Im done with cancer. But if Im not, Ill beat it back again. AND looking forward to a cruise to the caribbean in January with my little family!

I hope everyone is having a wonderful fall!

Easter Sunday in hospital

Hello all!

Just wanted to check in and let you know Im in the hospital waiting for my methotrexate levels to be low to go home.. this is the END OF TREATMENT IN THE HOSPITAL! Hopefully forever! I still have 1 eye treatment left, but that takes 5 minutes in the office. All in all, I have exceeded Dr. Os expectations and treatment has been a success (awaiting a confirmation biopsy, but from the looks of my eye, it looks great).

What happens now?  Well, I really dont know yet. Dr. O is still pondering the possibilities on what to put me on next to prevent or be a preemptive strike since I have a high probability of relapse in my central nervous system because of the location. But, I have full confidence that he will pick the right choice for me and everything will be great.

So heres to going home tomorrow and hopefully never being inpatient again! :)

Treatment 4 of 6 next Tuesday

Woohoo! on the home stretch!  Im actually starting to look beyond this irritating treatment!  My hair is also starting to get super thin, and Im wondering if Im going to be a baldy again after these 2 years of relentlessly growing my hair out. (ARGH)

Looks like Dr. O might want to try some additional CNS prophylaxis after treatment. Probably going to go back on SAHA/Niacinamide because it has shown in mice models to cross the blood brain, blood-retinal barrier and reduce cancer in the brain by 62% in one study I read. 

Of course this is assuming all of my scans, biopsies, etc are in the clear after treatment 6. This will be uncharted territory and I hope this is my last encounter with this stupid disease. Its also up in the air if I will get radiation to my eye after treatment ends also.. I believe Dr. Marr and Dr. O'Connor will have to hook up and decide.

But from a eye stand-point he says I am responding beautifully to treatment directly in my eye with MTX/Rituxan.  Still seeing floaters, but he says it takes a long time for those to eventually clear up because of lack of blood/lymph fluid circulation to the eye. (ironic huh) I may end up having to have a vitrectomy, where they suck out all of the fluid behind the eye and the aftermath of debris.

So I continue to be an enigma, a 1 in a million case, but it keeps the docs interested!  Treatment is starting to make me tired, but its more irritating than anything.

Im nervous for all of the end of treatment scans, biopsies...and what the future holds. But make no mistakes Ill do whatever it takes!  (Putting on superwoman cape)

Love,
Kara

Update 2/6/12

Hello all!

Im just writing in because I havent updated in a while.  Treatments 1-3 have been pretty uneventful (thankfully).  Today is going to be jam packed because we are flying out today and I still havent received my ARA-C into my spinal area yet. So that will happen when the attending docs clinic hours are over which is after 12. Our flight leaves at 7:15pm tonight so everybody here knows we gotta go! My head is getting sore, which is usually a sign of impending hair loss... which I have lost a little bit, but just enough for me to notice. I know thats the least of my worries, but it feels better not looking the part. Since my dose was increased by 30% Im expecting some more fallout, but hopefully Ill only be the one to be noticing. Otherwise, Im watching the sun rise over the George Washington bridge over the Hudson river. Hopefully the docs will round here shortly and I can get unhooked from this stupid IV pole I trip over constantly.

In other news, I just wanted to ask everyone to say a prayer for a fellow cancer warrior Hillary St Pierre.  She is in the final stages of liver failure and has only days left.. just pray for her peaceful passage to our heavenly father. She is a devoted catholic, and she knows where she is going :) Love her heart, she has done so much to lobby for affordable healthcare for cancer patients. If you'd like to read her blog it is http://baldiesblog.blogspot.com/  Check her out. She has some great articles.

But for now, Im going to see if I cant pack a few things up without waking up Chad. :)

Love,
Kara

Update 1/11/12

So... Im at Columbia Hospital just hanging out waiting on my MTX to get started.  Intraocular chemo was weird feeling, and made my eye pretty sore. No news really right now, just wanted to let everyone know I got here and am waiting for this party to get started.

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!

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!

MORE REMISSION!

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