Thursday, May 22, 2014
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!
Sunday, September 30, 2012
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!
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!
Sunday, April 8, 2012
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! :)
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! :)
Thursday, February 16, 2012
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
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
Monday, February 6, 2012
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
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
Wednesday, January 11, 2012
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.
Monday, December 19, 2011
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!!!!
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