Good Evening all!
Well, I've been trying to lay low the past few days to catch up on much needed rest. Today marks one week since surgery and my recovery is already two times faster than the last round. Cognitively I don't feel that I've lost anything and speech did not pick me up as a discipline, so that validates that belief. I woke up from surgery feeling like I had just taken a very long and restful nap. I was fully alert and oriented before we made it into the PACU for recovery. My left hand is still regaining some dexterity as typing with both hands is mildly challenging, but I am beginning to be able to tell where my proprioception is on my left side and so I can type with both hands again even if it is slow. I have definitely atrophied on my left side and it will take a few months to regain my full strength, balance and muscle mass, but thankfully I know a good PT while I wait on my orders to be processed through the hospital system.
Today is a day where I am reflecting on a few things that have come about with this new tumor. Prior to this surgery, I was angry and mean and short tempered. That anger has gone with the removal of the tumor, but the damage it did remains and will likely be permanent. As is the case with these things, I lost some more friends (and one who I considered very near and dear to me and that, generally speaking, I got along with on most things even if we didn't always see eye to eye (I was the "by the book individual and this other person was the laid back care free type). I have always been a prodder, I've even gone so far as to be perceived as a bully a time or two. I have always been the "poke the bull" and "suck it up" type individual if you will; but it was amplified two fold with this new tumor. I was short, uncouth, and flat out mean to people close to me. I knew it, and some days I could control it, but most of the time, it just came out of nowhere and steam rolled me into a level of rage I've never experienced before. I hated this me because I harbored hate in my heart for the first time ever and while I am extremely and deeply passionate about things, I've never felt hate to that degree before. That being said, I made some disrespectful comments to this individual and it was enough for this person to decide they didn't want to tolerate it anymore. I don't blame them, I probably would have done the same if I were in their shoes so I can only accept responsibility for my actions and work to learn from them. I am extremely apologetic to anyone who felt personally victimized by me during the past 6 months. I can't change the past, but I can start fresh. It's my only option. This illness has taken so many friends from me, many of who were just exhausted from the emotional rollercoaster that ensued regularly or just didn't know me well enough to know how to support me. I don't fault them, I empathize with them. There is only so much you can put up with before the exhaustion becomes overwhelming and you have to remove the toxicity from your life (I understand that more than anything). Its somewhat curious to see both sides of the issue. In a sense, it gives you an understanding that might not otherwise be achieved, but it also makes it hard because you can't explain things to those who have only experienced one side of the equation.
In the end, the ones who truly care will see you through thick and thin without question and with unwavering love and compassion (even when you don't deserve it). Those are the people I want by my side to cheer me on during the days when I can't be my own cheerleader.
Laura Davies
Wednesday, March 29, 2017
Friday, March 10, 2017
To my representatives in Congress
As I prepare for surgery number 2 in the coming weeks, I feel compelled to share the letter I wrote to Colorado Senator Cory Gardner in regards, to my current concerns with the attempt to repeal the ACA. Enjoy and feel free to share. They need to hear our stories and hear us, we the people!
Senator Gardner,
I hope you have had an excellent week. Unfortunately, this
letter is taking twice as long to write due to the fact that I have just
learned yesterday that I have a fluid filled cyst on my brain that due to new
tumor growth is now putting pressure on my motor cortex causing weakness on my
left side. I now have to use a cane to walk as a result of weakness, can only
type with one hand and am preparing for my second brain surgery. I am 32 years
old. As you are aware based on my past letters, I was diagnosed with a brain
tumor in 2014. Thankfully, all this can be remedied with surgery, but the new
tumor is more aggressive than the last and there is the possibility of having
to have to do chemo again. On top of that, I will likely have a long and
challenging recovery involving PT, speech and OT for several months, maybe in
an inpatient rehab setting. The cost of all of this is sure to be incredible
and I will likely end up paying a significant amount to cover costs. The good
news is that this surgery will be covered under the provisions of the ACA, but
if the tumor comes back in a year or two, who knows.
I am concerned with the recent release of the GOP proposal
for the replacement plan on the ACA, as it looks to benefit the young, the
wealthy and the insurers but not the elderly, the sick or the poor. I am young,
but I am sick and if this bill is allowed to pass I will likely not be able to
afford coverage under my husbands employer plan. You see, I am now on disability as a result of my deteriorating
situation. I want to go back to work in the future because surviving on my
husband’s income and my meager disability check is not enough to pay the bills
forever. As I’m sure you are aware, this bill does away with large companies
being required to provide their employees with coverage. This is unethical and
a corrupt business practice that puts corporations over people. That means,
when the next tumor pops up in the coming years, ‘I will not be able to afford
the life saving surgery I need to live. I very much want to work to help ensure
my fellow Coloradans do not face the potential for loss of coverage and this
bill will kick millions off their plans. I would love to meet with you and
share my concerns and my story. You have the opportunity to be the new face of
the Republican Party by listening to your constituents concerns and improving
the livelihood of all Coloradans.
Cordially,
Your constituent in 80226
Laura Davies, PT, DPT, COMT
Saturday, February 4, 2017
In the moment
Goodness,
I'm not even sure where to start. So much has happened over the past month, that I'm not sure how to put it into words for this blog. I am still working on my regimen with cannabis oil, but it has turned out to be more challenging than I may have anticipated. The goal for me is to work up to a gram of oil a day, but I have been delayed due to the Department of Health and Environment is delayed on processing applications for red cards (my mmj card). As of this date, I still have not received my red card, so I have not been able to purchase flower from my local dispensary as originally planned to make my own oil. I am hoping that my card comes in the mail this next week so I can start my process of creating my own oil. Currently I am utilizing a high THC strain that is like 60-80% THC (before weed was legal, THC concentrations were 6%, so you can imagine how a tiny bit of my oil will create an overly intense high. I have been supplementing with a high CBD product to help kick the high, but I need to just utilize a high CBD strain to make my own oil. The goal is to consume 60 grams of oil and get as close to 1 gram a day as possible.
Last month, I had the opportunity to participate in my first march for unity and in support of women's rights. It was one for the history books, with over 3 million people participating in marches world wide. We had around 200,000 here in Denver marching together. I am so excited about the opportunity to go down in history as being someone who participated in helping shape the future of out country. There is a saying that I have heard being passed around lately. It states, "Whenever you look back on history and think 'If I was alive then....' well, whatever you are doing now, is what you would have been doing then. I am excited to think I am on the frontline of justice, standing up for those who are unable to stand on their own. Nothing gives me more hope than joining 200,000 peaceful protesters who are walking the streets of our city crying, "We will NOT be silent". The one thing I can say is that it took the election of Donald Trump to bring about unity within our country. 1 in 100 people marched that day across the country.
This morning, I went to the bus stop to head downtown for a protect our muslim neighbors rally. As I was standing on the train platform I encountered a young African American Male who was smiling and watching the people who were headed to the rally. We got to talking and I learned that he was a practicing muslim that had immigrated to the United States over 6 years ago from Africa. He and I talked about the current political climate and right before we were about to board the train, he thanked me for being an ally to him and all muslims who are feeling persecuted in this country. He is currently enrolled in college in the Denver area and I was able to see first hand how immigrants make this country great (after all, this is a country founded by immigrants). I overheard someone say "progress is not a straight line, and that backlash like what we are seeing now comes when progress is swift. There would be no president Trump without President Obama. Well, stay tuned on my progress with the cannabis oil.
I'm not even sure where to start. So much has happened over the past month, that I'm not sure how to put it into words for this blog. I am still working on my regimen with cannabis oil, but it has turned out to be more challenging than I may have anticipated. The goal for me is to work up to a gram of oil a day, but I have been delayed due to the Department of Health and Environment is delayed on processing applications for red cards (my mmj card). As of this date, I still have not received my red card, so I have not been able to purchase flower from my local dispensary as originally planned to make my own oil. I am hoping that my card comes in the mail this next week so I can start my process of creating my own oil. Currently I am utilizing a high THC strain that is like 60-80% THC (before weed was legal, THC concentrations were 6%, so you can imagine how a tiny bit of my oil will create an overly intense high. I have been supplementing with a high CBD product to help kick the high, but I need to just utilize a high CBD strain to make my own oil. The goal is to consume 60 grams of oil and get as close to 1 gram a day as possible.
Last month, I had the opportunity to participate in my first march for unity and in support of women's rights. It was one for the history books, with over 3 million people participating in marches world wide. We had around 200,000 here in Denver marching together. I am so excited about the opportunity to go down in history as being someone who participated in helping shape the future of out country. There is a saying that I have heard being passed around lately. It states, "Whenever you look back on history and think 'If I was alive then....' well, whatever you are doing now, is what you would have been doing then. I am excited to think I am on the frontline of justice, standing up for those who are unable to stand on their own. Nothing gives me more hope than joining 200,000 peaceful protesters who are walking the streets of our city crying, "We will NOT be silent". The one thing I can say is that it took the election of Donald Trump to bring about unity within our country. 1 in 100 people marched that day across the country.
This morning, I went to the bus stop to head downtown for a protect our muslim neighbors rally. As I was standing on the train platform I encountered a young African American Male who was smiling and watching the people who were headed to the rally. We got to talking and I learned that he was a practicing muslim that had immigrated to the United States over 6 years ago from Africa. He and I talked about the current political climate and right before we were about to board the train, he thanked me for being an ally to him and all muslims who are feeling persecuted in this country. He is currently enrolled in college in the Denver area and I was able to see first hand how immigrants make this country great (after all, this is a country founded by immigrants). I overheard someone say "progress is not a straight line, and that backlash like what we are seeing now comes when progress is swift. There would be no president Trump without President Obama. Well, stay tuned on my progress with the cannabis oil.
Sunday, January 8, 2017
Colorful Colorado
Hello everyone!
I have so much information to update you all on so this blog will likely be lengthy. First of all, Happy New Year to everyone out there who has stumbled onto my blog. Jeramy and I have been non-stop since our arrival in Denver.
We arrived in Denver the evening of December 7th, just in time for the snow storm to hit town. Dad drove Jeramy's truck up here and Zach flew down to Austin to drive my car up(since I am not able to drive long distances anymore). We stopped and stayed the night in Lubbock on the 6th and then woke up the next morning to finish the last leg of the trip. Jeramy arrived first with the moving truck and started unloading. Zach and I got in that afternoon after Jeramy and helped unload with Zach's roommate, Rich. Dad did not make it in until much later that evening and was sick as a dog (we found out it was the flu after we put him on a plane home two days later). The next morning, we started the daunting process of unpacking our things and setting up the new house. The unpacking and unloading is still in progress, as weather and travel have slowed our unpacking process a bit.
Over the course of the first week here, we chipped away at the process while equally working to get information and equipment to the DMV so that we could establish residency. It took 3 tries going to the DMV, but we were finally able to get our drivers license's and register to vote. Once I received my Colorado ID, we went down to a local physician's clinic and completed the medical cannabis application (MMJ card). Obviously a brain tumor is a qualifying condition, so it was not challenging getting approved (although the Dept. of Health is backed up and I may not get my actual card before my temporary expires). I will go more into this later, but back to the move...
After we got all the major stuff set up and situated, Jeramy learned that he wouldn't be starting work until after the 1st of January, so we decided we would meet my family in Cincinnati, Ohio to celebrate Christmas (mom was upset that we weren't going because of Jeramy's new job). We drove up on the 16th of December and surprised everyone (except my aunt and uncle who had to know we were coming) and drove back on the 1st of January. We were able to see family we hadn't seen since the 2014 family reunion in Florida, which was fantastic. We also made the decision to get Lasik Eye Surgery from my Uncle at LasikPlus. It was the fastest and easiest surgical recovery I've ever had. That was our Christmas gift to each other this year (well I ended up getting two big gifts, but one was due to an unfortunate accident). I love it. Highly suggest lasik for anyone who normally wears contacts or glasses.
Jeramy started work on the 3rd of January and will be training days for the next 2-3 months before he switches to the night shift and 7 on/7 off daily schedule. This schedule is awesome because I won't be working for a bit while I complete my cannabis treatment and so that means we will be able to travel across the state to places I haven't been in such a long time. Jeramy and I enjoy adventure and this will be such a great opportunity for us to do more things together through travel and activity.
So now we are in the process of developing routine and getting settled. The month of January will not be any less busy for us than December I imagine. The blogging that I do from here on out will shift focus to include education and following me on my path of utilizing medical cannabis in the treatment of my condition(s). I will be utilizing medical cannabis to treat my possible tumor recurrence, seizures, and all other side effects associated with previous conventional treatment.
To start, I will provide an introductory explanation of the process of this treatment. Currently I am utilizing something called CO2 indica hash oil that is about 80% THC and supplementing with CBD oil during the day. Starting in February I will begin making my own oil so that I can utilize a high CBD strain full plant extract for treatment. The protocol that has been suggested to me is a 1:1 ratio of CBD to THC. My goal is to work up to taking a gram a day for a total of 60 grams. They say you should do this over a 90 day period, but I have spoken with quite a few individuals who have struggled to meet this dosage in 90 days, so I may not make it to that level within that time frame. At the present moment, I do not have full plant extract oil, so I am working with my dispensary to supplement the necessary amounts of THC with a high CBD oil. According to the education I have received from other individuals who have treated their own brain tumors, there are certain conditions that are more ideal than others and certain strains that are suggested over others. For Brain Tumors, the 1:1 ratio is ideal (although others have said its better to utilize a high THC strain). Suppository is the suggested means to transmit medicine because it causes the THC to bypass the liver and can deliver what is called Delta-9 THC to the brain (what is believed to be the most efficient way to produce cancer cell apoptosis). The other suggestions include mixing it with tea, rubbing it on gums, or adding it to meals. The problem with this delivery method is that it causes the THC to be broken down in the liver to 11-Hydroxyl THC (which is what delivers the feeling of being "high"). The process is very intensive and I have found that I do not particularly enjoy the feeling of being high. It has the most pronounced effect on my nervous system and causes me to experience mild levels of nausea. This is why I have decided to do the suppository route with my Full Plant Extract. I won't get the intense high, since it will be placed directly into the blood stream instead of broken down in the liver. We will make our own suppositories and then I will combine my dose with a carrier like coconut oil or olive oil to allow for appropriate transmission to the brain.
Phew! That's a lot for a supposedly "short" summary. Since we've been here, I have learned more than I ever thought possible with cannabis options. So, hopefully you will be intrigued enough to follow along with me on this journey. I am incredibly optimistic from the conversations I have been having with others regarding the use of cannabis to treat cancer. I have spoken with a gentlemen who had a rare form of liver cancer who was diagnosed as terminal and sent home to die. I spoke with him at the end of November and he explained to me he had been doing the cannabis protocol (over 90 days) at the request of his children. When I spoke to him in November, he had already surpassed his expiration date and stated he was feeling great and able to travel. As of January 1st, he has been declared cancer free (after they sent him home to die). I am also speaking with another gentleman in the Illinois area, who has a similar brain tumor and has been treating it with cannabis oil. He is almost finished with his treatment and goes in for an MRI next week and I am anxiously awaiting his results of the scans. I have read countless testimonials (especially with brain tumor patients) and spent the past 2+ years reading and talking to individuals who have both experienced the benefits of cannabis, as well as worked with others who have utilized cannabis for treatment of conditions. Within a few months of investigation, I knew this was the best option if the tumor came back.
Please feel free to reach out if you have questions or inquiries. I will do my best to answer what I can, but if you are truly interested, I suggest you look into it yourself. I'd start at www.leafly.com (it's the preferred site for legitimate information on cannabis use and benefits). So welcome to my journey! I hope that I can be a guiding light for other out there that have to face the unexpected and unfairness of being diagnosed with any illness, including cancer.
I have so much information to update you all on so this blog will likely be lengthy. First of all, Happy New Year to everyone out there who has stumbled onto my blog. Jeramy and I have been non-stop since our arrival in Denver.
We arrived in Denver the evening of December 7th, just in time for the snow storm to hit town. Dad drove Jeramy's truck up here and Zach flew down to Austin to drive my car up(since I am not able to drive long distances anymore). We stopped and stayed the night in Lubbock on the 6th and then woke up the next morning to finish the last leg of the trip. Jeramy arrived first with the moving truck and started unloading. Zach and I got in that afternoon after Jeramy and helped unload with Zach's roommate, Rich. Dad did not make it in until much later that evening and was sick as a dog (we found out it was the flu after we put him on a plane home two days later). The next morning, we started the daunting process of unpacking our things and setting up the new house. The unpacking and unloading is still in progress, as weather and travel have slowed our unpacking process a bit.
Over the course of the first week here, we chipped away at the process while equally working to get information and equipment to the DMV so that we could establish residency. It took 3 tries going to the DMV, but we were finally able to get our drivers license's and register to vote. Once I received my Colorado ID, we went down to a local physician's clinic and completed the medical cannabis application (MMJ card). Obviously a brain tumor is a qualifying condition, so it was not challenging getting approved (although the Dept. of Health is backed up and I may not get my actual card before my temporary expires). I will go more into this later, but back to the move...
After we got all the major stuff set up and situated, Jeramy learned that he wouldn't be starting work until after the 1st of January, so we decided we would meet my family in Cincinnati, Ohio to celebrate Christmas (mom was upset that we weren't going because of Jeramy's new job). We drove up on the 16th of December and surprised everyone (except my aunt and uncle who had to know we were coming) and drove back on the 1st of January. We were able to see family we hadn't seen since the 2014 family reunion in Florida, which was fantastic. We also made the decision to get Lasik Eye Surgery from my Uncle at LasikPlus. It was the fastest and easiest surgical recovery I've ever had. That was our Christmas gift to each other this year (well I ended up getting two big gifts, but one was due to an unfortunate accident). I love it. Highly suggest lasik for anyone who normally wears contacts or glasses.
Jeramy started work on the 3rd of January and will be training days for the next 2-3 months before he switches to the night shift and 7 on/7 off daily schedule. This schedule is awesome because I won't be working for a bit while I complete my cannabis treatment and so that means we will be able to travel across the state to places I haven't been in such a long time. Jeramy and I enjoy adventure and this will be such a great opportunity for us to do more things together through travel and activity.
So now we are in the process of developing routine and getting settled. The month of January will not be any less busy for us than December I imagine. The blogging that I do from here on out will shift focus to include education and following me on my path of utilizing medical cannabis in the treatment of my condition(s). I will be utilizing medical cannabis to treat my possible tumor recurrence, seizures, and all other side effects associated with previous conventional treatment.
To start, I will provide an introductory explanation of the process of this treatment. Currently I am utilizing something called CO2 indica hash oil that is about 80% THC and supplementing with CBD oil during the day. Starting in February I will begin making my own oil so that I can utilize a high CBD strain full plant extract for treatment. The protocol that has been suggested to me is a 1:1 ratio of CBD to THC. My goal is to work up to taking a gram a day for a total of 60 grams. They say you should do this over a 90 day period, but I have spoken with quite a few individuals who have struggled to meet this dosage in 90 days, so I may not make it to that level within that time frame. At the present moment, I do not have full plant extract oil, so I am working with my dispensary to supplement the necessary amounts of THC with a high CBD oil. According to the education I have received from other individuals who have treated their own brain tumors, there are certain conditions that are more ideal than others and certain strains that are suggested over others. For Brain Tumors, the 1:1 ratio is ideal (although others have said its better to utilize a high THC strain). Suppository is the suggested means to transmit medicine because it causes the THC to bypass the liver and can deliver what is called Delta-9 THC to the brain (what is believed to be the most efficient way to produce cancer cell apoptosis). The other suggestions include mixing it with tea, rubbing it on gums, or adding it to meals. The problem with this delivery method is that it causes the THC to be broken down in the liver to 11-Hydroxyl THC (which is what delivers the feeling of being "high"). The process is very intensive and I have found that I do not particularly enjoy the feeling of being high. It has the most pronounced effect on my nervous system and causes me to experience mild levels of nausea. This is why I have decided to do the suppository route with my Full Plant Extract. I won't get the intense high, since it will be placed directly into the blood stream instead of broken down in the liver. We will make our own suppositories and then I will combine my dose with a carrier like coconut oil or olive oil to allow for appropriate transmission to the brain.
Phew! That's a lot for a supposedly "short" summary. Since we've been here, I have learned more than I ever thought possible with cannabis options. So, hopefully you will be intrigued enough to follow along with me on this journey. I am incredibly optimistic from the conversations I have been having with others regarding the use of cannabis to treat cancer. I have spoken with a gentlemen who had a rare form of liver cancer who was diagnosed as terminal and sent home to die. I spoke with him at the end of November and he explained to me he had been doing the cannabis protocol (over 90 days) at the request of his children. When I spoke to him in November, he had already surpassed his expiration date and stated he was feeling great and able to travel. As of January 1st, he has been declared cancer free (after they sent him home to die). I am also speaking with another gentleman in the Illinois area, who has a similar brain tumor and has been treating it with cannabis oil. He is almost finished with his treatment and goes in for an MRI next week and I am anxiously awaiting his results of the scans. I have read countless testimonials (especially with brain tumor patients) and spent the past 2+ years reading and talking to individuals who have both experienced the benefits of cannabis, as well as worked with others who have utilized cannabis for treatment of conditions. Within a few months of investigation, I knew this was the best option if the tumor came back.
Please feel free to reach out if you have questions or inquiries. I will do my best to answer what I can, but if you are truly interested, I suggest you look into it yourself. I'd start at www.leafly.com (it's the preferred site for legitimate information on cannabis use and benefits). So welcome to my journey! I hope that I can be a guiding light for other out there that have to face the unexpected and unfairness of being diagnosed with any illness, including cancer.
Thursday, November 17, 2016
Being indifferent about racism and hate does not exempt you from its reality.
Like many, I am still reeling from this election outcome.
There has been so much that has gone down over the past week that has been
saddening and disturbing. On the one hand, Hillary Clinton is on track to
become the candidate who has received the second most votes in a presidential
election (compared to Barack Obama) and still lost. She has now received over 1
million more votes than President-Elect Donald Trump. On the other, hundreds of reports of
racist acts and attacks against immigrants and People of Color have been
flooding news headlines and we now know that Stephen Bannon (known for his Anti-Semitism,
racist and misogynistic remarks) has gained a top position in the white house
next to Donald Trump.
Last night I listened to Hillary’s speech that she made at
the Children’s Defense Fund (her first public appearance since her concession
speech last week). I listened as she spoke about having days where she just wanted
to curl up into a ball and never leave her house again. I listened as she spoke
of a dream involving her mother and how proud she would be that she had come as
far as she had. I listened as she emphasized an important message for her
supporters and those who fight for democracy and the wellbeing of others. Her
message was empathetic and powerful. Never give up.
As I started my day this morning, I began contemplating the
importance of the next 4 years, and what I needed to do to help push the
movement forward. I laughed at the
fact that someone close to me registered me to have subscriptions to the Trump
Campaign; the NRA; Fox News; and the Weld Republican Party in Colorado. This
individual very likely saw a post I placed on my Facebook page about donating
to Planned Parenthood in Mike Pence’s name. Well played my friend, or more than
likely, family member. I, at least, was willing to publicly announce my support
while you chose to hide behind your keyboard. You see, my family raised me to
be proud and speak up for what is right, not hide behind a computer screen
because you don’t want me to know who you are. Alas, I digress. I thought long
and hard about the challenges we will face over the next four years and the
issue of Racism and anti-Semitism immediately came to mind.
You see, whether you are willing to admit it or not, we are
all racists in some sense of the word, especially when we fall into the
Caucasian category. Now before you get angry and curse your at your computer,
hear me out. I am not sitting here saying you are specifically a racist
individual in the traditional sense. I am not saying that you support
segregation, or lynching, or slavery, or Jim Crow, the KKK, or any of the
“traditional” racist sentiment. In fact, up until this recent election, I was
more optimistic that those sects of society had essentially died off. I feel
differently about that now and you should too. I will be the first to admit
that I am racist because I have been indifferent.
Let’s break this down a little further. When you think of racism, you typically
think of the most blatantly obvious forms, so let me clarify that further. I am
not a member of the KKK, or any white supremacy groups. I do not actively
participate in activities condoned by these groups and I do not speak
derogatory terms about people of color in an attempt to establish my
superiority over them. I do not believe in segregation and I certainly would
never allow for anyone to implement Jim Crow laws in this country once again. Racism is very much alive in this
country, and I think that if you continue to deny that existence, you are in
for a huge awakening over the next four years (but that requires you to pay
attention).
The indifference of Racism is something Caucasian
individuals struggle with. You and I, we don’t have to worry about being
targeted by police because of the color of our skin. We don’t have to worry
about access to education and we know we will be able to find work when we
graduate from school, because we have the privilege to attend school in the
first place (many of us with the financial benefit to ensure an excellent
education, myself included). We are privileged to make decisions in this
country that we know will not have any impact on us. Most of us do not live in
poor neighborhoods and typically do not interact with those who do.
Try an experiment. Look around where you spend most of your
time with your family; is there diversity in your neighborhood? How many black
families reside there? How many Latinos? Asians? What about the grocery store?
Are you in a well off area of town? How many times have you walked in to
Wal-Mart and made judgments on people because you are likely better off than
them (we are all guilty here, people of Wal-mart, myself included). When you walk down the street, if you
see a police car, do you get scared? Do you worry for your safety? What about
if you see an older beat up car with expensive rims, what do you think to
yourself or say to others around you? If you say you wouldn’t say anything you
need to pay attention. Even I must admit that when I see someone driving in a
vehicle of that description I think, “that guy is possibly a thug or a drug
dealer”. When you see a homeless
person on the corner, do you think to yourself “get a job you lazy bum”?
Indifference is that I know when I get pulled over; I do not
have to worry about getting shot. Indifference is that I know that when I walk
down the street, I am not viewed as suspicious. Indifference is that I know
when I am shopping in the mall, store employees will not eye me every second to
see if I’m going to steal something.
Indifference is that I know that I can drive a
luxury car around town and people will think I drive it because I earned it.
Indifference
is like putting blinders on racism and I’m here to tell you, LETS ALL TAKE THEM OFF.
Stop being indifferent and start being more involved. Speak up and do not remain silent. If you finish reading this and feel that I am specifically targeting you and that I am a hypocrite. Go back and re-read for your sake. I am calling myself out too. I, like all of you, am just as guilty of these things. I am just choosing to acknowledge the elephant in the room. I want to be better; I want things to be better. If that means I have to be the first to come out and admit my faults, so be it.
I don’t typically post bible passages, because most often
they get thrown at me in a way to tell me to be more Christian, but I can’t
help but think about the book of Matthew Chapter 25:31-40.
We should all do some self-reflection today.
Monday, November 14, 2016
MD Anderson
You want to talk about the epitome of a horrible day?
Imagine you are sitting in the waiting room at MD Anderson in Houston, Texas (where you are looking to get a second opinion on your diagnosis of a recurrence of a past Brain Tumor) and subsequently watching the election results blare across the television with the headline "In his first 100 days: Repealing the Affordable Care Act". For many, understanding the emotion in that type of situation is impossible because, lets face it....You think, "I'm healthy, this won't affect me". You need to hear me out please.
Some of my friends and many people around the country voted for Trump based on this campaign promise because they were frankly, fed up with the rising premiums on their insurance and they didn't feel that Obamacare was working well for them. I get that. Insurance is out of control, and something needs to be done about it. You have a right to be fed up, but you should also take into consideration something else. 20 million people have gained insurance since the initiation of the ACA and it has done away with Insurance companies putting caps on the insured because their care costs too much. It prevents insurance companies from discriminating against people because of pre-existing conditions which, was my saving grace. You see, I will require lifetime follow up care for my medical condition that has left me battling intractable epilepsy and in need of frequent MRIs to catch disease progression. Brain cancer for most, is not a one and done like some cancers. The outlook is often grim and many fellow survivors have battled recurrences 2, 3, 4 sometimes even 5 times during their lifetime.
So, back to sitting in that waiting room watching that television... As the words "Repeal Obamacare" scroll across the screen, you feel the nausea rising and the uncontrollable urge to panic. You see, repealing Obamacare means that millions of individuals out there like you, are at risk of being dropped by their current insurance companies because you are too expensive to insure.
Some have said, just get a new insurance company. It doesn't necessarily work that way (and that's a conversation for another day).
Repealing Obamacare opens me up to a level of insurance discrimination that we haven't seen since the ACA was enacted back in 2010. So naturally, my level of anger and frustration was at an all time high. What's worse? Many of the people I talked to who voted for Trump based on that fact alone, didn't even consider the outcome on people they know and love. I know many of you have or have had a family member who was ill with Cancer, or some other form of debilitating illness that required extensive medical care and follow up. How would you feel knowing that you just opened the path for those people to no longer be able to afford their medical care. Would you be happy? Would you be sad? Would you be angry that you might have to watch your cancer stricken family member suffer endlessly because they can no longer afford treatment? What would you do about it?
Some have told me, Pray. Prayer is important and something easy to do, but if you can tell me you would be willing to place all your chips on the slim chance of a miracle, you would be kidding yourself. I once encountered a man who had broken his leg so severely that the fracture had been displaced causing an obvious deformity. Instead of going to the emergency room where his leg could have been reset and casted and he would have made a full recovery, he chose to pray because he believed Jesus would heal him without intervention. Years later, his leg is permanently disfigured and he is unable to walk and relies on a motorized scooter to navigate his community. I believe in prayer, I pray regularly. I pray for god to give me strength so that I am able to persevere on the hardest days I face. I pray for peace and understanding for myself and for those around me. I do not pray for god to cure me. Instead, I pray for God to guide me to find new ways to address my condition and guide me in educating myself in all possible means of recovery and healing. So when I am facing not only the possibility of having Cancer for a second time and then on top of that, the possibility of losing my insurance? I'm not going to be to keen on suggestions made by others. As a cancer survivor, people say things that are insulting and rude (even when they don't intend for it to be). You get treated differently because of it, and it has resulted in me losing quite a few friendships over the past two years. These are things that I have come to terms with.
Facing a second round of this diagnosis means that I am not denying my emotions or hiding them because frankly, I NEED to grieve, and I NEED to be angry. I NEED to scream this is not fair at the top of my lungs, and I certainly need to feel down.
As I sit here writing this I am convinced that I am winding down the bargaining stage of grief. I am hoping that this man with no political experience who is neither Republican nor Democrat will somehow see the light and have an incredible change of heart. I am hoping that this man is just as big of a Con as I saw him to be on the campaign trail (after all, he ran a brilliant campaign catering to a group of individuals who feel forgotten). I am hoping for empty campaign promises.
The second opinion is inconclusive on tumor recurrence. I am going to be returning to MD Anderson to undergo an MR with spect and profusion to determine if it tumor or tissue necrosis. I am hoping for the latter. If it is tumor, it is likely low-grade and I might be a candidate for something called Laser Interstitial Thermal Therapy (LITT). It is a minimally invasive surgical procedure that involves inserting a catheter into the area involved and slowly heating up the tumor tissue to create cellular apoptosis or programmed cell death. Jeramy and I will still be moving to Denver, Colorado on the 5th of December and I still plan to continue with additional treatment options at that time. I have spoken with quite a few people who have been able to get their seizure activity under control and get off some of their meds using cannabis oil, which has allowed them better quality of life and the ability to work without fear.
Imagine you are sitting in the waiting room at MD Anderson in Houston, Texas (where you are looking to get a second opinion on your diagnosis of a recurrence of a past Brain Tumor) and subsequently watching the election results blare across the television with the headline "In his first 100 days: Repealing the Affordable Care Act". For many, understanding the emotion in that type of situation is impossible because, lets face it....You think, "I'm healthy, this won't affect me". You need to hear me out please.
Some of my friends and many people around the country voted for Trump based on this campaign promise because they were frankly, fed up with the rising premiums on their insurance and they didn't feel that Obamacare was working well for them. I get that. Insurance is out of control, and something needs to be done about it. You have a right to be fed up, but you should also take into consideration something else. 20 million people have gained insurance since the initiation of the ACA and it has done away with Insurance companies putting caps on the insured because their care costs too much. It prevents insurance companies from discriminating against people because of pre-existing conditions which, was my saving grace. You see, I will require lifetime follow up care for my medical condition that has left me battling intractable epilepsy and in need of frequent MRIs to catch disease progression. Brain cancer for most, is not a one and done like some cancers. The outlook is often grim and many fellow survivors have battled recurrences 2, 3, 4 sometimes even 5 times during their lifetime.
So, back to sitting in that waiting room watching that television... As the words "Repeal Obamacare" scroll across the screen, you feel the nausea rising and the uncontrollable urge to panic. You see, repealing Obamacare means that millions of individuals out there like you, are at risk of being dropped by their current insurance companies because you are too expensive to insure.
Some have said, just get a new insurance company. It doesn't necessarily work that way (and that's a conversation for another day).
Repealing Obamacare opens me up to a level of insurance discrimination that we haven't seen since the ACA was enacted back in 2010. So naturally, my level of anger and frustration was at an all time high. What's worse? Many of the people I talked to who voted for Trump based on that fact alone, didn't even consider the outcome on people they know and love. I know many of you have or have had a family member who was ill with Cancer, or some other form of debilitating illness that required extensive medical care and follow up. How would you feel knowing that you just opened the path for those people to no longer be able to afford their medical care. Would you be happy? Would you be sad? Would you be angry that you might have to watch your cancer stricken family member suffer endlessly because they can no longer afford treatment? What would you do about it?
Some have told me, Pray. Prayer is important and something easy to do, but if you can tell me you would be willing to place all your chips on the slim chance of a miracle, you would be kidding yourself. I once encountered a man who had broken his leg so severely that the fracture had been displaced causing an obvious deformity. Instead of going to the emergency room where his leg could have been reset and casted and he would have made a full recovery, he chose to pray because he believed Jesus would heal him without intervention. Years later, his leg is permanently disfigured and he is unable to walk and relies on a motorized scooter to navigate his community. I believe in prayer, I pray regularly. I pray for god to give me strength so that I am able to persevere on the hardest days I face. I pray for peace and understanding for myself and for those around me. I do not pray for god to cure me. Instead, I pray for God to guide me to find new ways to address my condition and guide me in educating myself in all possible means of recovery and healing. So when I am facing not only the possibility of having Cancer for a second time and then on top of that, the possibility of losing my insurance? I'm not going to be to keen on suggestions made by others. As a cancer survivor, people say things that are insulting and rude (even when they don't intend for it to be). You get treated differently because of it, and it has resulted in me losing quite a few friendships over the past two years. These are things that I have come to terms with.
Facing a second round of this diagnosis means that I am not denying my emotions or hiding them because frankly, I NEED to grieve, and I NEED to be angry. I NEED to scream this is not fair at the top of my lungs, and I certainly need to feel down.
As I sit here writing this I am convinced that I am winding down the bargaining stage of grief. I am hoping that this man with no political experience who is neither Republican nor Democrat will somehow see the light and have an incredible change of heart. I am hoping that this man is just as big of a Con as I saw him to be on the campaign trail (after all, he ran a brilliant campaign catering to a group of individuals who feel forgotten). I am hoping for empty campaign promises.
The second opinion is inconclusive on tumor recurrence. I am going to be returning to MD Anderson to undergo an MR with spect and profusion to determine if it tumor or tissue necrosis. I am hoping for the latter. If it is tumor, it is likely low-grade and I might be a candidate for something called Laser Interstitial Thermal Therapy (LITT). It is a minimally invasive surgical procedure that involves inserting a catheter into the area involved and slowly heating up the tumor tissue to create cellular apoptosis or programmed cell death. Jeramy and I will still be moving to Denver, Colorado on the 5th of December and I still plan to continue with additional treatment options at that time. I have spoken with quite a few people who have been able to get their seizure activity under control and get off some of their meds using cannabis oil, which has allowed them better quality of life and the ability to work without fear.
Wednesday, November 2, 2016
We're moving! (again)
I have begun a new journey once again this week.
As some of you are aware, I did not have a good follow up with my oncologist last month regarding my most recent MRI. There were some noticeable changes in my MRI that could not be distinguished between post-treatment effects and/or tumor growth. These changes prompted my oncologist to recommend I look into joining a trial for recurrent anaplastic astrocytoma in people who have previously undergone surgery, temodar, and radiation treatment. The study, is funded by Orbus Therapeutics (A biopharmaceutical company). The STELLAR study, involves the use of an experimental drug called Eflornithine, which is given in conjunction with lomustine to inhibit the growth of certain enzymes within the cancer cells. Now, the fact that he jumped right into this conversation set off a few red flags for me, but I was willing to hear him out. Jeramy and I began with an onslaught of questions almost immediately. The first being, does this involve chemotherapy? The doctor immediately responded, no, and began to explain what specifically Eflornithine was. I asked him to explain everything I could think of, particularly....what is the quality of life of the patient's on this trial? What kind of success rate are we looking at with this treatment IF I receive the experimental drug? Can this cure me (and not in your 5 year survival rate BS term, but in the actual cure that will allow me to live until I'm 80 or 90).
With each question, I became more and more suspicious of this doctor's motivations. I started asking myself, if the growth is too small for me to be a surgical candidate, why are we already jumping into these majorly aggressive treatment techniques? This isn't adding up for me. I began to ask more questions regarding the study, to which, ultimately, the Oncologist did not have any more information about. The information I gained from him regarding the study, is that they weren't looking to reverse tumor growth, just stop it with the experimental drug. Furthermore, the treatment lasts for 1 year and there is only a 50% chance you will receive the experimental drug. Every one in the study, will, however, receive Chemotherapy. The other thing about the study included that the treatment wasn't a cure and that it basically involved me likely having to be on this treatment to control tumor growth for the rest of my life. Also, it did not change survival outcomes in the short term and not enough information was available regarding long term outcomes (which is ultimately what the study aims to analyze). Here is the link to the drug company website if you are interested in reading more about the STELLAR study. http://www.orbustherapeutics.com
When we left the Oncologists office, naturally I was in complete panic mode. My Oncologist knew that I was not interested in participating in chemotherapy if it can be avoided, and I absolutely refuse to do radiation again. Despite these wishes, he chose to push the chemo route anyway. It made me livid. So much so, that I decided to look into the Oncologist a little more. Turns out, he's big into getting his name on research related to Brain Tumors and treatment. Now, don't get me wrong. He's a damn good Doctor. He's had extensive training and has been named one of the top doctors in America according to his site bio. His focus has been on researching treatments for brain tumors specifically, so the guy knows his stuff, no doubt.
Keep in mind that this is the second time I am facing this type of news and that I have already been through treatments that cost upwards of 50-60,000 US. My experience over the past two years has been that conventional medicine has brought me virtually no quality of life, but has actually taken it away. It is not the "gold standard" they hype it to be and I'll be damned if I jump into it again without much thought and consideration for alternatives. Now, I know some of you who have extensive medical backgrounds, and you probably think I'm crazy. My only comment to you, is that I hope you never get Brain Cancer; or any other cancer for that matter...but if you do find yourself with a Brain Tumor, ONLY then can you comment on my choices and decisions. Until that time I ask politely that you keep your mouth shut, because YOU are not the one making these decisions and facing these realities. If that offends you, I encourage you to stop reading my blog because everything I do from here on out, will likely go against everything you believe to be correct.
So, faced with this decision, I have chosen to inquire a second opinion from MD Anderson in Houston and then Jeramy and I will be relocating to the Denver, Colorado area in December to seek out alternative treatment options for this possible recurrence. I say possible, because the MRI report mentions that they can't tell if it is tumor or post-treatment changes and so I want MD Anderson to weigh in. I have spoken with a fellow brain tumor survivor who states that the same thing happened to him and it turned out to be nothing, but did bump his MRI schedule back up to every 3 months. He is currently 2-3 weeks into a 90 day treatment for Brain tumors using a type of Rick Simpson Oil, which is made from the marijuana plant. The treatment involves working up to ingesting 1 gram of a 1:1 ratio of CBD/THC a day over a 90 day time frame, for a total of 60 grams of the mixture. I have read countless testimonials on this. They are mostly using it to treat Glioblastomas, but have seen success in all types of gliomas at this time. They have even discovered that using this in conjunction with chemotherapy helps the chemotherapy better target cancer cells and helps to protect healthy cells. The best thing about it? Less side effects from chemo.
If you would like to know more, I encourage you to research into this yourself and I would be happy to point you in the right direction.
As it stands, I will likely put out another blog post after my visit to MD Anderson on 11/10/2016 with any additional or updated information.
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