Hello friends. It has been awhile since my last post. So much has transpired with my cancer, and I have been down, not having the cognitive ability to stay on top of my blog.
My cancer is taking control of my life and I am hoping that will all change when I visit my specialist tomorrow. My blood is taking over and wreaking havoc on my entire bodily systems. I was recently hospitalized and it was found that I have carotid artery disease. My artery is 1/2 blocked and there is stenosis on my carotid artery bulb. Now, I don't have all the technical lingo, but this is all new findings, meaning my blood is making clotting a major risk factor. I have already suffered two TIA's, which increases my stroke risk, and now this new finding increases it even more. For me, the time is now to tackle this cancer head on. The problem with that is, there is no cure. There are only treatments to try and assist me in regaining my quality of life. My quality of life is poor right now. I want to move in a direction that will change my prognosis. I am at moderate risk of mortality-that is scary. The only thing that is an option to save my life is a stem cell transplant. It is a dangerous procedure and comes with many unknowns; which makes me apprehensive about wanting to take that route. But here is how I am thinking about it...having PV makes me a 45% risk of dying from thrombatic events, such as stroke or clot. My scans indicated that I had a pseudo aneurysm; combined with the other findings, my risk for stroke is high. We have to change all of that, STAT! I can only leave this in God's hands, and tomorrow discuss all of this with the specialist and devise a new plan.
I am still working on my blog posts about families dealing with cancer when Mom is the one who has received the diagnosis of cancer. There is so much to learn, and there is little information for people like me, who have children, one who is still young, to assist us in helping our families and loved ones cope with our illness. Everything changes when Mom has cancer, it really does. As I can, I will post more and talk about our experience as a family, and how it has changed our life.
I am getting excited about Christmas. I am cleaning and organizing, as much as I can, to get the house prepared for this very special time of year. I love Christmas time. Well maybe December in general! LOL! It is also my birthday month, so it has always been a special time of year.
See you soon!
Love always,
Cara
Thursday, November 30, 2017
Thursday, October 5, 2017
So much stuff in my brain....
I want to keep writing and writing and writing to try and get all this stuff, ideas, or things out of my head. I also want to continue the dialogue, When Mom has Cancer. I think it is important for myself, and for others, to learn what it is like to deal with cancer while having a young family. I am learning as I am writing this-taking it all in is overwhelming some days and I do have to disconnect.
One very important part of being a mom with cancer, is spending quality time with my children. While the boys are young men, building their own lives, it is my precious, sweet girl...who I try and lavish much attention and love on. She knows the word cancer, but does she know how that will really effect our family in the distant future? Death is not something that I can truly comprehend, how do I expect her to even have an inkling of the "proper" behavior when dealing with her mother's illness. We just play. We play, we read, we spend time together learning new things, because I want to give her all of me, now. I want to fill her soul with love; love for others, but also love for herself. If I am not around, she is going to need to be tough, and know that she is favored by God, and will stand strong. I want her to make all the "best" decisions she can for her age, with the knowledge that she is stronger than anything that can try and bring her down. I just want to be her mother and snuggle with her as much for as long as I can. She is my world. They all are, no need in explaining that-they know it.
It's days like tomorrow that put a crimp in the emotions; DOCTOR DAY. All results will be in and I am just so apprehensive. What next? Have I morphed enough to qualify for the stem cell? Do I mention it? How will it all go? My foggy brain only remembers key phrases he said two weeks ago, and the look of "get me outta here before she asks too many questions", on his face. Staining the cells, counting the blasts...blah blah...BLASTS!?!? Do I have blasts...I don't remember what he said.
But for today, I am going to end here and try to accomplish a few things. Had some calls and messages from friends to get to. Sadly, at one time I could multi-task...now I have to multi-ask everyone what the hell I was doing!!!!
Enjoy a few photos from our weekend...almost a weekend ago! lmao
One very important part of being a mom with cancer, is spending quality time with my children. While the boys are young men, building their own lives, it is my precious, sweet girl...who I try and lavish much attention and love on. She knows the word cancer, but does she know how that will really effect our family in the distant future? Death is not something that I can truly comprehend, how do I expect her to even have an inkling of the "proper" behavior when dealing with her mother's illness. We just play. We play, we read, we spend time together learning new things, because I want to give her all of me, now. I want to fill her soul with love; love for others, but also love for herself. If I am not around, she is going to need to be tough, and know that she is favored by God, and will stand strong. I want her to make all the "best" decisions she can for her age, with the knowledge that she is stronger than anything that can try and bring her down. I just want to be her mother and snuggle with her as much for as long as I can. She is my world. They all are, no need in explaining that-they know it.
It's days like tomorrow that put a crimp in the emotions; DOCTOR DAY. All results will be in and I am just so apprehensive. What next? Have I morphed enough to qualify for the stem cell? Do I mention it? How will it all go? My foggy brain only remembers key phrases he said two weeks ago, and the look of "get me outta here before she asks too many questions", on his face. Staining the cells, counting the blasts...blah blah...BLASTS!?!? Do I have blasts...I don't remember what he said.
But for today, I am going to end here and try to accomplish a few things. Had some calls and messages from friends to get to. Sadly, at one time I could multi-task...now I have to multi-ask everyone what the hell I was doing!!!!
Enjoy a few photos from our weekend...almost a weekend ago! lmao
Monday, October 2, 2017
Tuesday, September 26, 2017
Mom's got cancer...now what?
For many, the heart of the home is the mother, but it can be any other central figure, who is the "heart" of the home. The one who keeps it all together-who knows all the kid's birthdays, social security numbers-well, at least I know where they are! The person who fixes boo boos, listens to tall tales-literally, and the all around go to, in the family. In this family, that is me. I am called, Mom.
WOW! Mom is a huge undertaking. With my oldest at the ripe young age of 20, and my youngest turning a mere 8, in just a few months. Don't forget the "middle kids"-there are really two middle kids, becoming young men themselves at the ripe young ages of 18 and 17, well almost 17. He and his sister share their birthday; and she is adopted! That is another story for another time-a blessing, not a coincidence.
I was diagnosed just two short years ago; and I say short, because it seems like they flew by. I was beginning to have symptoms that affected my health. After nearly a year of testing, our worst fears became our reality. And I say our, a lot! It is me who has to deal with the physicality of cancer, but it is ALL OF US, who have to deal with the emotional, spiritual, and mental aspects of a family member with cancer. By the way, I haven't found a book yet, or a list of things to employ, that have helped me, help my family deal with my cancer. I will say, humor has helped greatly! Making jokes makes the reality, seem a little less hard to deal with.
So, now what? I have shared that laughter really is the best medicine, it has been for us; while it is the oldest cliché in the book, it has merit. Sadly though, it does not solve all problems, all the time.
For reference, we have been dealing with this cancer diagnosis, like I mentioned, for 2 years. In that time, we have had to adjust to the reality of Mom having 2 TIAs (which are caused by clots breaking free). Lucky me, I have a cluster of clots, explained to me as looking like a "bunch of grapes", at the base of my left anterior brain. Keeping my body in a "hematogically balanced state", is the key to keeping my clots under control. I have had to visit the ER many times for various different organ dysfunctions, and visited many different doctors, for many different reasons. One would think a person with cancer has one doctor to organize the whole mess, but in reality many doctors are needed because cancer, my cancer anyhow, is a systemic disease. Meaning, it effects the entire body in some way. In a nutshell, we have had to deal with the progressive decline of my body and how it functions.
The boys, have all had to take an active part in my daily care, and take me to many of my appointments. This is something that I never dreamed of after becoming their mother. I am the rock, not them. But, I have learned to cherish the time with them, and see that I have no regrets in the way that they were raised, because they are fine, well adjusted young men. They have circled around me in a way that I can only explain as, protecting mama grizzly bear. They make sure my meds are taken, my needs are met, and include me in their daily lives. 2 of the 3 still reside at home-something I am very thankful for-another tribute to myself for being the greatest mother! In all honesty, they could be running out the door with their "coming of age" independence. But I relish in their company and when it is their time to leave the nest, I will be their BIGGEST cheerleader!
I have spoken to dealing with cancer as a family, using laughter. I have also given a glimpse into how we got where we are now-living and surviving with a rare progressive blood cancer. But...it is right now, in the present moment, when we begin to really face how cancer is going to effect our whole family.
Stay tuned....we are going to address the "now what", in the next blog post. Did I mention that my memory is toast, mush, or whatever you want to call a brain that has been subject to strokes, chemo, multiple drugs, and cancer in general. A little bit at a time.....
WOW! Mom is a huge undertaking. With my oldest at the ripe young age of 20, and my youngest turning a mere 8, in just a few months. Don't forget the "middle kids"-there are really two middle kids, becoming young men themselves at the ripe young ages of 18 and 17, well almost 17. He and his sister share their birthday; and she is adopted! That is another story for another time-a blessing, not a coincidence.
I was diagnosed just two short years ago; and I say short, because it seems like they flew by. I was beginning to have symptoms that affected my health. After nearly a year of testing, our worst fears became our reality. And I say our, a lot! It is me who has to deal with the physicality of cancer, but it is ALL OF US, who have to deal with the emotional, spiritual, and mental aspects of a family member with cancer. By the way, I haven't found a book yet, or a list of things to employ, that have helped me, help my family deal with my cancer. I will say, humor has helped greatly! Making jokes makes the reality, seem a little less hard to deal with.
So, now what? I have shared that laughter really is the best medicine, it has been for us; while it is the oldest cliché in the book, it has merit. Sadly though, it does not solve all problems, all the time.
For reference, we have been dealing with this cancer diagnosis, like I mentioned, for 2 years. In that time, we have had to adjust to the reality of Mom having 2 TIAs (which are caused by clots breaking free). Lucky me, I have a cluster of clots, explained to me as looking like a "bunch of grapes", at the base of my left anterior brain. Keeping my body in a "hematogically balanced state", is the key to keeping my clots under control. I have had to visit the ER many times for various different organ dysfunctions, and visited many different doctors, for many different reasons. One would think a person with cancer has one doctor to organize the whole mess, but in reality many doctors are needed because cancer, my cancer anyhow, is a systemic disease. Meaning, it effects the entire body in some way. In a nutshell, we have had to deal with the progressive decline of my body and how it functions.
The boys, have all had to take an active part in my daily care, and take me to many of my appointments. This is something that I never dreamed of after becoming their mother. I am the rock, not them. But, I have learned to cherish the time with them, and see that I have no regrets in the way that they were raised, because they are fine, well adjusted young men. They have circled around me in a way that I can only explain as, protecting mama grizzly bear. They make sure my meds are taken, my needs are met, and include me in their daily lives. 2 of the 3 still reside at home-something I am very thankful for-another tribute to myself for being the greatest mother! In all honesty, they could be running out the door with their "coming of age" independence. But I relish in their company and when it is their time to leave the nest, I will be their BIGGEST cheerleader!
I have spoken to dealing with cancer as a family, using laughter. I have also given a glimpse into how we got where we are now-living and surviving with a rare progressive blood cancer. But...it is right now, in the present moment, when we begin to really face how cancer is going to effect our whole family.
Stay tuned....we are going to address the "now what", in the next blog post. Did I mention that my memory is toast, mush, or whatever you want to call a brain that has been subject to strokes, chemo, multiple drugs, and cancer in general. A little bit at a time.....
New Design & New Photos
Welcome to the new design; simple and elegant. I like to have my words express who I am; and of course, my love of photography!
My photos can be viewed and purchased from the following link: https://www.eyeem.com/u/maelynnlee
If interested in actual print image, please contact me and I will gladly give you pricing and information! Thanks in advance.
My photos can be viewed and purchased from the following link: https://www.eyeem.com/u/maelynnlee
If interested in actual print image, please contact me and I will gladly give you pricing and information! Thanks in advance.
Beauty in Nature
A girl and her cats!
Hurricane Irma 2017
It Is Only Tuesday....ARG!
It's only Tuesday, first of all, I need some new batteries in my keyboard; I need to fix the screen on my IPhone, because that thing is an important part of my life-school, jobs, school, after school programs, blah blah blah...the list goes on. I digress...
Liz is home from school today, which sets me back on my goals a bit; it is hard to focus on the needs of a 7 year old, and be a mom with cancer. Somehow that sentence is going to become a jumping point for a series of blogs, soon as I get organized, again.
For this week, I have a new goal. I am enrolled in a pilot app study for meditation, while using a Fitbit-all for the Doctors at Arizona State University, under the direction of Dr. Reuben Mesa and the Mayo Clinic. So excited. I worn the thing for week one, to assess my baseline activity and sleep patterns. I desperately need help in the sleep category; my sleeping has decreased due to pain and illness. I am hoping to learn a few things about myself, and my daily life-yet also excited to have a purpose. This study will help MPN sufferers in the future, AMEN.
We, like everyone in my house has this disease-are embarking on a new direction in our journey with cancer. So far, palliative medications haven't help for symptomatic burden. I am currently doing a two week trial of steroids, while patiently waiting for all the results to come in from labs and biopsy. While some think I am crazy, duly noted...I have prayed for worst case scenario, because that is the only opportunity that I have for a shot at LIFE. I have to be worst before they will even consider fixing me. And no, stem cell transplant is not without complications, even earlier death-I DON'T CARE. I am a strong persistent woman, who will not give this life up without a fight. I have so much love to give, surely God is just showing me how strong I really am before stepping out in the criminal justice arena. LOL.
I WANT:
to live
to work
to see my children grow
to love
to save innocents
to help spread justice
to see the world experience true peace
Ok for now. I am going to work on my first CALM application. I will then come back and freshen up the blog, ready to attract new readers. Then I will share links and more information about the CALM application! Couldn't we all use a little CALM in our lives? I think so!
believe and you will receive
Liz is home from school today, which sets me back on my goals a bit; it is hard to focus on the needs of a 7 year old, and be a mom with cancer. Somehow that sentence is going to become a jumping point for a series of blogs, soon as I get organized, again.
For this week, I have a new goal. I am enrolled in a pilot app study for meditation, while using a Fitbit-all for the Doctors at Arizona State University, under the direction of Dr. Reuben Mesa and the Mayo Clinic. So excited. I worn the thing for week one, to assess my baseline activity and sleep patterns. I desperately need help in the sleep category; my sleeping has decreased due to pain and illness. I am hoping to learn a few things about myself, and my daily life-yet also excited to have a purpose. This study will help MPN sufferers in the future, AMEN.
We, like everyone in my house has this disease-are embarking on a new direction in our journey with cancer. So far, palliative medications haven't help for symptomatic burden. I am currently doing a two week trial of steroids, while patiently waiting for all the results to come in from labs and biopsy. While some think I am crazy, duly noted...I have prayed for worst case scenario, because that is the only opportunity that I have for a shot at LIFE. I have to be worst before they will even consider fixing me. And no, stem cell transplant is not without complications, even earlier death-I DON'T CARE. I am a strong persistent woman, who will not give this life up without a fight. I have so much love to give, surely God is just showing me how strong I really am before stepping out in the criminal justice arena. LOL.
I WANT:
to live
to work
to see my children grow
to love
to save innocents
to help spread justice
to see the world experience true peace
Ok for now. I am going to work on my first CALM application. I will then come back and freshen up the blog, ready to attract new readers. Then I will share links and more information about the CALM application! Couldn't we all use a little CALM in our lives? I think so!
believe and you will receive
Monday, August 28, 2017
MPN 2017 ATL Conference
So excited to attend the 2017 MPN conference in October! Meet new folks and hear the latest news on MPN's!
http://mpnadvocacy.com/wp-content/uploads/2013/01/Atlanta-Flyer-2.pdf
Friday, June 16, 2017
June Thoughts....
This is a journal entry that was required for my Bachelor's Capstone class to graduate....
Ok, this journal entry is making me look forward to 6 months from
now. It is June 16, 2017, I am in the
battle for my life, while trying to maintain the energy to finish up this
term. Truth. It is really hard to see myself in 6 months
having anything to do with criminal justice.
Truth. My goals included a trip
to the beach with my family (check), to attend my graduation (check)…now the
immediate goal is to finish this term, and check it off the list. Then, I am going to focus all my energy on
getting a stem cell transplant. It has
all been working out, so I anticipate in a couple of weeks, when this term is
over, I can begin the process of healing.
In order to survive, my disease has no cure, I need to undergo a stem
cell transplant, and it is all I have dreamed and hoped for since I found out
that I had no other options. I do take
meds to control the symptomatic aspect of my disease and receive palliative
care, but I am too young, and love my family too much to sit aside and slowly
die. So, on June 30th when I see my
doctor again, I am putting in the request to begin the process. I have to endure another bone marrow biopsy
to determine the progression of my cancer, and then we will be able to go from
there.
I would love to tell you that my dreams in the criminal justice
system will come true, but I cannot. And
to be honest, the journey to get to the end was the most important thing I gained
from my time at Kaplan. Kaplan has been
an amazing blessing in my life in too many ways to count. They have supported me through some very
tough times, and when they made an error, were quick to right their wrong. For that, I am very thankful. Unfortunately, it is my state in life that
puts my dreams of a super investigator,
humanity saver…on hold. Hopefully
just temporarily. I believe in God, so I
know that He has some super things in store for me and if walking through
cancer with dignity and grace is His choice for my life, then I gladly walk
that walk. Dignity and grace are very
hard to perfect when walking the cancer walk, but I try every day to do my best
to love those around me and treat them with respect and dignity. My education at Kaplan has taught me to
become a more versatile individual, to open my mind to learning, and to strive
to be the best I can be, no matter where I am in life.
My goal as a Kaplan alumni, is to make them proud by being the best
version of myself that I can be, in and out of the criminal justice profession.
Oh, as a side note though, my dream, prior to this dumb cancer was to
enroll in Concord Law School. I spoke
with them at graduation and received some materials to review. I am eligible to enroll, of course the only
thing stopping me is this disease, BUT the next class start I could possibly
begin is Jan. 2018. Just remember,
miracles happen…..
Friday, May 26, 2017
I Try!
Sometimes I think, I am going to get on that computer and update the blog; ya know, do something to keep me occupied. The problem with being stuck at the homestead is, I get bored and need things to do. I am a nature person, and it has been raining for days. The sun came out today, but naturally I had an early start for palliative care, and in a rotten mood afterwards.
This palliative care thing, really? I have a doctor that is about 20, thinks my disease is for elderly folks who have no complaints, or even need treatment. So, as he goes about discussing this with my doctor, I continue down the road of frustration. Do you even know how hard it is to have a rare disease, one that no one seems to understand, yet expects you to be positive? It is dragging the life out of me, day after day; so why do I have anxiety?
Our beach trip was a beautiful success. Had a good time. It was cold, and then warmed up. The water is too cold for me but it was refreshing to get away and see my best friend. Ansley is growing up so quickly, so proud of her and the young woman she has become. We have been blessed to be a part of her life.
Next up? GRADUATION! Finally, the time has come. I am excited, but apprehensive because of the travel and feeling so yucky. I have to put my best feet forward and just keep it moving. This disease, cancer...MPN, whatever...I have to just keep fighting it every single day and pursue my dreams. There is nothing else to do but accept it, and keep truckin'! No one else can do this but me, and God has given me the strength, courage, and hope to live this battle with grace and dignity. Even if I have to remind myself daily, or every moment, I know He is with me, and my life is already going as He planned. He knew every hair on my head before I was born, my life is destined to what He has already planned and I have submitted to His Will for my life, a long time ago. Do I fall? Do I fail? Heck yes! Wouldn't be human if I didn't make mistakes along the way. I certainly have no regrets, zip!
This palliative care thing, really? I have a doctor that is about 20, thinks my disease is for elderly folks who have no complaints, or even need treatment. So, as he goes about discussing this with my doctor, I continue down the road of frustration. Do you even know how hard it is to have a rare disease, one that no one seems to understand, yet expects you to be positive? It is dragging the life out of me, day after day; so why do I have anxiety?
Our beach trip was a beautiful success. Had a good time. It was cold, and then warmed up. The water is too cold for me but it was refreshing to get away and see my best friend. Ansley is growing up so quickly, so proud of her and the young woman she has become. We have been blessed to be a part of her life.
Next up? GRADUATION! Finally, the time has come. I am excited, but apprehensive because of the travel and feeling so yucky. I have to put my best feet forward and just keep it moving. This disease, cancer...MPN, whatever...I have to just keep fighting it every single day and pursue my dreams. There is nothing else to do but accept it, and keep truckin'! No one else can do this but me, and God has given me the strength, courage, and hope to live this battle with grace and dignity. Even if I have to remind myself daily, or every moment, I know He is with me, and my life is already going as He planned. He knew every hair on my head before I was born, my life is destined to what He has already planned and I have submitted to His Will for my life, a long time ago. Do I fall? Do I fail? Heck yes! Wouldn't be human if I didn't make mistakes along the way. I certainly have no regrets, zip!
Friday, April 7, 2017
I love to learn!
Here I am supposed to be blogging about the illness, and new advances...I am playing my Township game, that I LOVE! One of my friends speaks Turkish, so I am online learning some new words!
The ability to reach out and touch someone, not literally, in another country is so amazing. My only wish would be that we could all get along. No more killing and destruction, just love.
Someday peace will reign....
Love always.......
The ability to reach out and touch someone, not literally, in another country is so amazing. My only wish would be that we could all get along. No more killing and destruction, just love.
Someday peace will reign....
Love always.......
Thursday, April 6, 2017
Getting Back to It 2017
Updating the blog, been a log! No, been super busy with the return to Kaplan to finish my degree. There is barely time to think, let alone remember to write here too. Journals for my meds and symptoms, and writing for school, leaves me exhausted.
As a matter of fact, school starts in about ten minutes. Put the finishing touches on design, cause I am OCD, and attempt to update my journey.
Love always....
As a matter of fact, school starts in about ten minutes. Put the finishing touches on design, cause I am OCD, and attempt to update my journey.
Love always....
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