It's easy to kind of "forget" about Cancer sometimes. Life is busy and meds become regular parts of our days, but sometimes it is still very real!
Bryan has been dealing with the "Tasigna Rash". They have tried a few medications and most recently, had him quit his chemo drugs for 4 weeks trying to get it to go away. (Stressful for the RN in me). The Doctors say that if they can get the rash to go away, it usually stays away. Unfortunately, it improves but is far from gone.
Today, I am at home with sick kids while he is at Moffitt Cancer Center without me. They are finally sending him to a dermatologist that is used to cancer pts and chemo rashes. We'll see what they say. I am having the "my sweetheart really does still have cancer and will have it from now on" - feeling. This is just life now. I want to enjoy each day and never forget how quickly it can all change!!!
I love you, my Bryan!!!!
Monday, December 20, 2010
Tuesday, October 26, 2010
One Year Since Diagnosis
It's the anniversary of Bryan's diagnosis. It still is a very tender subject to me. We have so much to be grateful for, so many blessings have come over this past year, that it seems much longer than a year. Funny, how the hardest times in life, seem to move in slow motion and the lessons to learn are so immense. I know we haven't learned and gained all we there is, because life continues in that slow, crazy, trial-full life pattern. Yet, today is a day to celebrate and remember how far we have come!!!!
* We are never alone, not spiritually and not temporally. We have been carried and loved and strengthened by so many.
*Miracles happen today, just as they have throughout time. We have seen healing miracles of the body and mind. We have witnessed and experienced numerous financial miracles.
* The Lord is acutely aware of all of our needs and has a plan already prepared if we will but place our full and complete trust and faith in Him, He will lead us along.
Bryan is doing well. He has acquired the Tasigna rash (33% of pts get it), but the oncologists are working to get it under control. He is working full time and loving his new job. He continues to experience fatigue, but we focus on all that he can do. He is an amazing husband and fun, loving father. We are blessed. The Cancer commercials of late, that focus on Birthdays, bring tears to my eyes. We have two friends who have lost their fight and two more struggling to hold on, we feel guilty at times that we have "survived", but realize it's the Father's will for us and we just have to do all that we can to fulfill the missions He has for us here in our time.
Thanks again for all the love and support, I know I haven't gotten out all the Thank You cards and couldn't express adequately all the tender feelings we have towards all of those who have helped us over this past year. We love you. Thank you for hearing our calls for help and acting without praise or acknowledgment.
We continue forward.
* We are never alone, not spiritually and not temporally. We have been carried and loved and strengthened by so many.
*Miracles happen today, just as they have throughout time. We have seen healing miracles of the body and mind. We have witnessed and experienced numerous financial miracles.
* The Lord is acutely aware of all of our needs and has a plan already prepared if we will but place our full and complete trust and faith in Him, He will lead us along.
Bryan is doing well. He has acquired the Tasigna rash (33% of pts get it), but the oncologists are working to get it under control. He is working full time and loving his new job. He continues to experience fatigue, but we focus on all that he can do. He is an amazing husband and fun, loving father. We are blessed. The Cancer commercials of late, that focus on Birthdays, bring tears to my eyes. We have two friends who have lost their fight and two more struggling to hold on, we feel guilty at times that we have "survived", but realize it's the Father's will for us and we just have to do all that we can to fulfill the missions He has for us here in our time.
Thanks again for all the love and support, I know I haven't gotten out all the Thank You cards and couldn't express adequately all the tender feelings we have towards all of those who have helped us over this past year. We love you. Thank you for hearing our calls for help and acting without praise or acknowledgment.
We continue forward.
Monday, April 12, 2010
Great News!!!!
We have been a while in writing, but want to give everyone an update on Bryan. We were at Moffitt Cancer Center last week to find out the results of his Bone Marrow Biopsy he had done the end of March. It was Great News. His doctor stopped us in the waiting room to tell us that he is in Complete Cytogenic Response. Here is what that means...There are three stages of improvement with CML.
1 - Hematologic Response = the blood counts have returned to normal
2 - Cytogenic Response = the cells look normal without the mutated chromosome visible
3 - Molecular Response = this is the most sensitive test they have developed to show any DNA changes and is measured by the number of zeroes in a formula 0.000000 is as low as it can detect and when it is all zeroes it is considered in complete remission. This is the point where you just continue on medication to keep it suppressed to undetectable levels.
So, Bryan had achieved complete Hematologic response back in December when his blood was looking normal, or at least his White Blood Cells and Red Blood Cells, for some reason his platelets still remain low. Goal #1, expected by 3-6 months, Bryan achieved in ~6 weeks.
He has now hit the second goal, Complete Cytogenic Response, his counts went from 100% of the cells were cancerous and abnormal to 0%. None were seen. Goal #2 is expected to be achieved by 12 months, Bryan hit it in 5 months, but only 3 months on the medication.
We are in a "Major Molecular Response" his reading is 0.000026. Two more zeroes to go. A Major response isn't even expected until 18 months of therapy, but here again he hit it in 3 months.
The best news is that the faster a person responds to therapy the better prognosis they have. So because Bryan has responded so quickly from such a high risk beginning the doctor said he has pretty much a 100% chance of no progression of the disease or recurrence!!!! His doctor is even using Bryan's case in studies for this new medication, promoting it's use as a first line therapy for newly diagnosed patients.
We were also concerned about him getting another form of cancer later on, and the doctor said that CML unlike other leukemias has zero associations with other types of cancers. His risk is no higher than any other person in getting any other type of cancer.
Overall, we are thrilled and feel so eternally grateful for how blessed he has been. Bryan will post later about his new job and feelings, etc. We just wanted everyone to know the latest. Sorry, I'm so dry in my writing. It is still hard for me to express much more, emotions still run pretty high and I'm trying to process. Thanks again for everyone's prayers and help of all kinds. We have felt so much love and support through this all.
1 - Hematologic Response = the blood counts have returned to normal
2 - Cytogenic Response = the cells look normal without the mutated chromosome visible
3 - Molecular Response = this is the most sensitive test they have developed to show any DNA changes and is measured by the number of zeroes in a formula 0.000000 is as low as it can detect and when it is all zeroes it is considered in complete remission. This is the point where you just continue on medication to keep it suppressed to undetectable levels.
So, Bryan had achieved complete Hematologic response back in December when his blood was looking normal, or at least his White Blood Cells and Red Blood Cells, for some reason his platelets still remain low. Goal #1, expected by 3-6 months, Bryan achieved in ~6 weeks.
He has now hit the second goal, Complete Cytogenic Response, his counts went from 100% of the cells were cancerous and abnormal to 0%. None were seen. Goal #2 is expected to be achieved by 12 months, Bryan hit it in 5 months, but only 3 months on the medication.
We are in a "Major Molecular Response" his reading is 0.000026. Two more zeroes to go. A Major response isn't even expected until 18 months of therapy, but here again he hit it in 3 months.
The best news is that the faster a person responds to therapy the better prognosis they have. So because Bryan has responded so quickly from such a high risk beginning the doctor said he has pretty much a 100% chance of no progression of the disease or recurrence!!!! His doctor is even using Bryan's case in studies for this new medication, promoting it's use as a first line therapy for newly diagnosed patients.
We were also concerned about him getting another form of cancer later on, and the doctor said that CML unlike other leukemias has zero associations with other types of cancers. His risk is no higher than any other person in getting any other type of cancer.
Overall, we are thrilled and feel so eternally grateful for how blessed he has been. Bryan will post later about his new job and feelings, etc. We just wanted everyone to know the latest. Sorry, I'm so dry in my writing. It is still hard for me to express much more, emotions still run pretty high and I'm trying to process. Thanks again for everyone's prayers and help of all kinds. We have felt so much love and support through this all.
Wednesday, February 24, 2010
I'm Not Dead
It has been a while since I updated this blog but its not because I'm dead. But being dead would be a good reason to leave the blog ill attended to. I mean, that would make this thing so hard to maintain! Its hard enough to be alive and get to it. Anyway, I'm alive and slooooooooowly improving so I'm grateful for that and Amanda says she is to.
I don't have time to write much now but a lot has happened in the last month so I plan to write more next time Amanda works. For now I just wanted people to know that I am alive and it looks like that will be the case for a good long while. But, life is still hard right now as I am sure it is for all of us in various ways. My dad once told me that life doesn't get less stressful, but our ability to deal with stress can and does improve. I never really liked the idea that overall my life wasn't going to get easier (and so far it hasn't). But lately I have begun to understand what he meant a little better.
I remember being really stressed about something when I was younger and my dad saying to me simply, "Son, some things matter and some things don't." Learning what matters and what doesn't has everything to do with our ability to cope with the stresses we face and yet be happy. I have found that the more I understand what really matters and what really doesn't, the happier I am regardless of the stress in my life. But ironically, it seems that figuring out what matters and what doesn't can't be done without a little stress. Maybe dad has some things figured out after all.
Thoughts of running away from it all or wallowing in the whys or wishing I didn't have to go through this don't stay in my mind for long, but they do enter from time to time. For this reason, your comments have always been a helpful and cherished part of this blog. If I could put to music how I have often felt through the last few months fighting the cancer bug I would, but I can't. However, the music video below was written by a guy who beat leukemia and this song is about his battle. It means a lot to me because it does describe very very well how I have felt.
I don't have time to write much now but a lot has happened in the last month so I plan to write more next time Amanda works. For now I just wanted people to know that I am alive and it looks like that will be the case for a good long while. But, life is still hard right now as I am sure it is for all of us in various ways. My dad once told me that life doesn't get less stressful, but our ability to deal with stress can and does improve. I never really liked the idea that overall my life wasn't going to get easier (and so far it hasn't). But lately I have begun to understand what he meant a little better.
I remember being really stressed about something when I was younger and my dad saying to me simply, "Son, some things matter and some things don't." Learning what matters and what doesn't has everything to do with our ability to cope with the stresses we face and yet be happy. I have found that the more I understand what really matters and what really doesn't, the happier I am regardless of the stress in my life. But ironically, it seems that figuring out what matters and what doesn't can't be done without a little stress. Maybe dad has some things figured out after all.
Thoughts of running away from it all or wallowing in the whys or wishing I didn't have to go through this don't stay in my mind for long, but they do enter from time to time. For this reason, your comments have always been a helpful and cherished part of this blog. If I could put to music how I have often felt through the last few months fighting the cancer bug I would, but I can't. However, the music video below was written by a guy who beat leukemia and this song is about his battle. It means a lot to me because it does describe very very well how I have felt.
Monday, January 25, 2010
Busy, Busy, Busy
It has been a while since I updated the blog because things have been so crazy for my family lately! Amanda working, me being mom a lot more (I am a great dad but a crappy mom!), not knowing if I will feel great tomorrow or like a wreck or just feel okay or feel weird, etc. It is a full time job just working with insurance companies, the government, different cancer charities, arranging doctors appointments, getting blood sucked out of my arm every other day, ect. Amanda has been the greatest thing ever through all this! For those of you who don't know her or don't know her well, she really is an incredible person by anyones' standard! She truly loves people and gives of herself constantly! We both have days where we fall apart, want to forget everything, or have a nervous breakdown but luckily we are not usually going to pot on the same day.
Life is hard to plan right now! It seems like everyday we are flying by the seat of our pants. Roles in the family are out of whack and change happens constantly! Our family routine is shot most of the time and we still have 4 kids who get the flu, a couple of them still poop in their pants, they go to school, need love & attention and struggle (put nicely) to clean up after themselves! They also know that mom and dad are under a lot of stress which is hard for them sometimes I am sure.
If you see me in public itching like a crackhead, I am not on meth or crack and I didn't sit on a tainted toilet seat. It is just the chemo! I sweat when others are freezing and my skin looks like a teenagers again because I got the blessed rash that 30% of Tasigna patients get! So far it is not nearly as severe as a lot of others have it though.
Over all I am feeling stronger, and better and more able to do things in the day. I just tiled my own living room and personally I think looks absolutely incredible! The rest of the house is next. I am going to try and start working for other people again the second half of February. I have been cautious about tearing up someone else's house and then not being able to perform up to par for them. Poor Brooks Logan had to deal with that just before I got diagnosed. Doing my own tile went well though, so I am ready to get back into what I love again pretty soon.
This post is just a quick ramble but I wanted to post some sort of update for you. Hope it was informative. There are a lot of other things going on that I will post later. But for now, I am going to bed. My poor Amanda will be up all night at the hospital working again. I can't wait till she can stay home with the kids again. She is home with us most of the week but I am hurting to see her life get back to normal again!
Thank you all for your support and prayers and I'll keep you posted as things come about. This week and next will hold a lot of new revelations and we are waiting of a lot of test and things to come back. Hang in there ya'll! I know we will!
Love,
B Russ, Amanda, Makayla, Gavyn, Bryton, and Cayd
Life is hard to plan right now! It seems like everyday we are flying by the seat of our pants. Roles in the family are out of whack and change happens constantly! Our family routine is shot most of the time and we still have 4 kids who get the flu, a couple of them still poop in their pants, they go to school, need love & attention and struggle (put nicely) to clean up after themselves! They also know that mom and dad are under a lot of stress which is hard for them sometimes I am sure.
If you see me in public itching like a crackhead, I am not on meth or crack and I didn't sit on a tainted toilet seat. It is just the chemo! I sweat when others are freezing and my skin looks like a teenagers again because I got the blessed rash that 30% of Tasigna patients get! So far it is not nearly as severe as a lot of others have it though.
Over all I am feeling stronger, and better and more able to do things in the day. I just tiled my own living room and personally I think looks absolutely incredible! The rest of the house is next. I am going to try and start working for other people again the second half of February. I have been cautious about tearing up someone else's house and then not being able to perform up to par for them. Poor Brooks Logan had to deal with that just before I got diagnosed. Doing my own tile went well though, so I am ready to get back into what I love again pretty soon.
This post is just a quick ramble but I wanted to post some sort of update for you. Hope it was informative. There are a lot of other things going on that I will post later. But for now, I am going to bed. My poor Amanda will be up all night at the hospital working again. I can't wait till she can stay home with the kids again. She is home with us most of the week but I am hurting to see her life get back to normal again!
Thank you all for your support and prayers and I'll keep you posted as things come about. This week and next will hold a lot of new revelations and we are waiting of a lot of test and things to come back. Hang in there ya'll! I know we will!
Love,
B Russ, Amanda, Makayla, Gavyn, Bryton, and Cayd
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