Hello everyone out there,
A few weeks ago we held an appreciation gathering for all of those who have shown so much care and support for my family and I during this very emotional time. Unfortunately I was locked out of my account and only now recovered the original posting, so the content of this was originally written a few weeks ago and is now being expanded upon.
At the gathering we had a great time seeing our friends and meeting all of those faces who had been writing their support but still remained faceless. We cooked our world famous Urzua's chili and home-made BBQ sauce from scratch, had lil' smokies and a ton of hot dogs for everyone. We had a great turn out with people beginning to show up around 2 p.m. and filtering in and out until late into the evening. Even though I was a little drained in the afternoon from my Chemo, I was very uplifted by the company and was able to keep up all night, it was fantastic. I miss having gathering like that and sharing with so many new and existing friends alike. I feel incredibly blessed that with all that has been going on and all I have been through, I can still enjoy a carefree day of just sharing company, experiences and good food with really great people and not feel like I have an illness. I mean, there is no denying I have cancer, but no one really looks at me or treats me like an invalid, which is great. I love that people just accept that no matter what, I'm just Joey. Even those who couldn't make it or live too far away dropped in on our Facebook page and left little messages showing that they were here in spirit.
So many people showed up it was amazing, lets see if I can still remember who all came, From K-9 there was Chris, Kevin, Cody, Dan, Mark and a couple more, also Sara, Shayna and a few more of the wives. CPT Hegge showed up, as did COL Edwards and his wife Vanessa with their son Dylan. Ashley Myers, Tamara Richards, Katy Bowden, Thomas Odeen, Jessica Lynn Estebane-Venturino, Mike Kimball, lots of kiddos, Tony and Summer Lozano, Vanessa Asis-Perrigo, Issac and Christina Bliek, Chris and Amanda and Kayla Sansing, Chaplain Tisher, his wife Shannon and their children, my good friend Wayne Grimsrud, plus a whole bunch of children, our yard was packed. If I forgot anyone else, I apologize, please drop me a line and I'll add you in. It was great. Once we get to Texas and get situated, I want to have more gatherings like that. Already have a few visits lined up for some of my friends and family members to come out and see us.
The day really made me appreciate how much people care and how blessed my family and I really are. Since the diagnosis, Susanna has stopped working in order to care for me and make sure I get to my appts. and what not, and while I have done very well with my treatments, I still have days where i am in a lot of pain or am very emotional, especially now that I am being slowly weened off of my steroids in preparation for my MRI in a couple weeks. In addition we are trying to rent out the house before we leave for Texas and have a lot to do in anticipation of that. Unfortunately I am an emotional mess at times and can be a little unbearable. I am glad that Susanna and the kids are so patient with me as I adjust to this. One of the other big adjustments is getting used to supporting the family on my income alone. With everything packed up and gone, we are very limited on clothes and food and going through our resources like crazy, luckily we have some very good friends here who have offered to help out with use of their washer/dryer to clean our stuff. While I strive to remain upbeat and positive throughout my diagnosis and treatment, I must admit I have experienced the occasional bouts of anger and sadness. However, as I have been slowly reduced on my doses of steroids I have noticed the instances are fewer and a little more far between. I am still bloated like you wouldn't believe but am beginning to feel my strength return and am looking forward to be starting to exercise soon. Overall, I am feeling more good than bad and, as always, am grateful for my family, friends and the prayers and support of everyone out there. Thank you all.
Wednesday, November 3, 2010
Tuesday, November 2, 2010
Livin', Laughin'. Lovin', gotta lot to be thankful for.
I finally have a chance to write my blog. Thanks to my 3 year old daughters hacking skills, I was locked out of my account for the past 2 weeks. I finally retrieved my password and am finally able to re-write this. I finished my Radiation and Chemo Therapy on the 22nd of OCT. and have so far been doing really well. I also got a copy of my Orders to Ft. Sam Houston finally and my report date is going to bein Dec, and my household goods were packed and shipped out for us on OCT 29th so a lot has happened in a very short period of time. For those of you wondering what this means, I am still going to remain a SGT and Animal Care Specialist in the U.S. Army. However, I will no longer be a part of the Army Veterinary Command/Public Health Command and am being re-assigned to the Warrior Transition Unit (the Wounded Warrior Program) in San Antonio, TX. That is all the information I can divulge, but I am very fortunate and blessed to have the opportunity to be a part of this unit and to receive care and treatment here.
So far my recovery from the diagnosis of my class 4 Glioblastoma has been amazing and I have so many people to be thankful for. First off I truly believe God has played the biggest role of all in saving my life and bringing about all of the people who have showed so much love and support for me and my family. There are those who I have encountered who have asked me how I can remain so positive in the face of all I have endured and have such faith and devotion, especially when I reveal that I have not always had the strongest of faith or been the most godly or religious of individuals throughout my life. Growing up I did not have the strongest or most nourishing church environment and was often in a dark place spiritually as I tried to make sense of my world and the series of unfortunate events my family experienced. By the time I got to Middle School I had been introduced to a very spiritual family in my neighborhood, the Manuekians, who had helped open my eyes and heart to the possibility of something more spiritual in my life. While I did not immediately find my way socially or spiritually, I did receive a sense of direction that has been working in my life and helping to guide me throughout the years.
One of the things I still am saddened by is when I receive messages or inquiries from people where they display anger, blame, or disbelief in God, especially at my situation. I don't understand how anyone could blame God, or whatever higher power that may influence their life. I mean, the way I interpret things, we were all given free will to live our lives, and while God does have a plan for everyone, what happens in the world is a result of what we as humans do with our time here, our choices and decisions shape our path, and some events occur that are in fact beyond our control. This does not mean that God is making bad things happen to good people and rewarding bad people in their place. It simply means that in the course of human events when bad things do happen to good people, God is there to care for them and provide strength for they and their families when they need it most. I see God in the same light I saw my parents growing up, but in the ultimate capacity. They watched out for me and tried to provide guidance as best they could to protect me, but were unable to protect me from every single contingency. When hurt they nurtured me and bandaged me up until I was old enough to take care of myself, and even then they never stopped worrying and caring for me. While my beliefs may fall somewhere between the Bible and Science, my faith has no doubt that there is a God and that he is watching out for us for better or for worse. If my cancer remains in remission and never returns or if it comes back within a year, he will be there to help me and my family through it and gives us the strength and wisdom accept his plan for us. While my goal with this observation is not to change the minds or hearts of others, it is just to express my opinions and possibly give others an alternate point of view.
There are too many people who have been involved in my recovery and who have touched my life in some way, shape or form for me to thank individually or to do everyone the justice they deserve, but I have been so blessed and whole heartedly wish to thank each and everyone who has wished us well and and been so caring and supportive during this trying time for both myself and my family.
Second to God, I would like to thank my beautiful Wife Susanna for caring for me, standing by me and supporting me during my diagnosis, surgery and initial treatment as well as taking care of our children during times when I was unable to help out due to my condition. The medical staff at the Rapid Regional Hospital who took care of me from diagnosis until my discharge was also wonderful and deserve the highest recognition for their compassion and dedication.
And those who have been responsible for my care from Dr. Salgeskog, the surgeon who removed and identified my tumor, to Dr. Schwartz, the Oncologist who has been providing weekly care and updates for me, and the rest of the Cancer Care Institute staff who cared and supported my treatment.
While was in the hospital still recovering I was also visited by several my co-workers and support elements from Ellsworth AFB, including my Commander, CPT Hegge, the K-9 Handlers from the 28th SFS, The 1st Shirt and Commander from 28th FSS, MSG Platt and LTC Rucker. I also received some spiritual encouragement from LTC Bell and Ms. Hedin. I was unable to use my phone or type very much during this time, but Susanna did check my calls and pass on several messages for me from my family, friends and lots of people from my unit.
We kept my illness quiet at first until we knew what was going on with me, and once I was discharged from the hospital Susanna sent out a mass e-mail letting everyone know what was going on with me and how I was doing after the fact. Once I had found out what my prognosis was, my first conscious request was that "I want to take my girls to Disneyland." So with the help of Susanna, SSG Buyck, my Mother and my sister Roshell, my cousin Stephanie and countless others, a mass message was circulated letting everyone know what my wish was and the response we got was nothing short of inspirational. People I had barely known responded, people I had not heard from in years responded, and people I did not even know responded in addition to those who were already close to me, donating to my families trip to Disneyland before I would begin my Chemo and Radiation treatment. We received letters of encouragement and support from all over. While I was not able to respond to many of them, I did sit with my children and read each and every one with them.
Another group of people who have been of extreme inspiration and assistance were the Key Spouse network here at Ellsworth headed up by Ms. Shayna Sidle who organized and scheduled for people to aid us with child-care, meals and other assistance, despite her times of illness and heavy school and family obligations, she is truly a blessing. For all of those who assisted us in our time of need, thank you.
I have also received a lot of encouragement from Chaplain Parrish, Chaplain Tisher, Chaplain Bell and Rev. Oliver as well as support from my friends and fellow worshippers at the Protestant and IGS services on base.
Through all of my experiences I have been feeling a bit of a calling and may actually be looking into working more with the religious services or possibly re-classing as a Chaplains Assistant once I get to Ft. Sam and get situated.
For now I am just focused on how fortunate and blessed that I have been able to touch the lives of so many people and likewise to have been affected by so many people in turn. I apologize that this blog is soo long and has an unusual flow to it, but I have been attempting to write it for some time and have been experiencing several setbacks in the process, namely Destiny, lol. I tried to be as fair as possible and acknowledge as many people as possible. If I missed anyone left anyone feeling overlooked, please forgive me. Thank you for taking the time to read this and I look forward to hearing your feedback on this.
So far my recovery from the diagnosis of my class 4 Glioblastoma has been amazing and I have so many people to be thankful for. First off I truly believe God has played the biggest role of all in saving my life and bringing about all of the people who have showed so much love and support for me and my family. There are those who I have encountered who have asked me how I can remain so positive in the face of all I have endured and have such faith and devotion, especially when I reveal that I have not always had the strongest of faith or been the most godly or religious of individuals throughout my life. Growing up I did not have the strongest or most nourishing church environment and was often in a dark place spiritually as I tried to make sense of my world and the series of unfortunate events my family experienced. By the time I got to Middle School I had been introduced to a very spiritual family in my neighborhood, the Manuekians, who had helped open my eyes and heart to the possibility of something more spiritual in my life. While I did not immediately find my way socially or spiritually, I did receive a sense of direction that has been working in my life and helping to guide me throughout the years.
One of the things I still am saddened by is when I receive messages or inquiries from people where they display anger, blame, or disbelief in God, especially at my situation. I don't understand how anyone could blame God, or whatever higher power that may influence their life. I mean, the way I interpret things, we were all given free will to live our lives, and while God does have a plan for everyone, what happens in the world is a result of what we as humans do with our time here, our choices and decisions shape our path, and some events occur that are in fact beyond our control. This does not mean that God is making bad things happen to good people and rewarding bad people in their place. It simply means that in the course of human events when bad things do happen to good people, God is there to care for them and provide strength for they and their families when they need it most. I see God in the same light I saw my parents growing up, but in the ultimate capacity. They watched out for me and tried to provide guidance as best they could to protect me, but were unable to protect me from every single contingency. When hurt they nurtured me and bandaged me up until I was old enough to take care of myself, and even then they never stopped worrying and caring for me. While my beliefs may fall somewhere between the Bible and Science, my faith has no doubt that there is a God and that he is watching out for us for better or for worse. If my cancer remains in remission and never returns or if it comes back within a year, he will be there to help me and my family through it and gives us the strength and wisdom accept his plan for us. While my goal with this observation is not to change the minds or hearts of others, it is just to express my opinions and possibly give others an alternate point of view.
There are too many people who have been involved in my recovery and who have touched my life in some way, shape or form for me to thank individually or to do everyone the justice they deserve, but I have been so blessed and whole heartedly wish to thank each and everyone who has wished us well and and been so caring and supportive during this trying time for both myself and my family.
Second to God, I would like to thank my beautiful Wife Susanna for caring for me, standing by me and supporting me during my diagnosis, surgery and initial treatment as well as taking care of our children during times when I was unable to help out due to my condition. The medical staff at the Rapid Regional Hospital who took care of me from diagnosis until my discharge was also wonderful and deserve the highest recognition for their compassion and dedication.
And those who have been responsible for my care from Dr. Salgeskog, the surgeon who removed and identified my tumor, to Dr. Schwartz, the Oncologist who has been providing weekly care and updates for me, and the rest of the Cancer Care Institute staff who cared and supported my treatment.
While was in the hospital still recovering I was also visited by several my co-workers and support elements from Ellsworth AFB, including my Commander, CPT Hegge, the K-9 Handlers from the 28th SFS, The 1st Shirt and Commander from 28th FSS, MSG Platt and LTC Rucker. I also received some spiritual encouragement from LTC Bell and Ms. Hedin. I was unable to use my phone or type very much during this time, but Susanna did check my calls and pass on several messages for me from my family, friends and lots of people from my unit.
We kept my illness quiet at first until we knew what was going on with me, and once I was discharged from the hospital Susanna sent out a mass e-mail letting everyone know what was going on with me and how I was doing after the fact. Once I had found out what my prognosis was, my first conscious request was that "I want to take my girls to Disneyland." So with the help of Susanna, SSG Buyck, my Mother and my sister Roshell, my cousin Stephanie and countless others, a mass message was circulated letting everyone know what my wish was and the response we got was nothing short of inspirational. People I had barely known responded, people I had not heard from in years responded, and people I did not even know responded in addition to those who were already close to me, donating to my families trip to Disneyland before I would begin my Chemo and Radiation treatment. We received letters of encouragement and support from all over. While I was not able to respond to many of them, I did sit with my children and read each and every one with them.
Another group of people who have been of extreme inspiration and assistance were the Key Spouse network here at Ellsworth headed up by Ms. Shayna Sidle who organized and scheduled for people to aid us with child-care, meals and other assistance, despite her times of illness and heavy school and family obligations, she is truly a blessing. For all of those who assisted us in our time of need, thank you.
I have also received a lot of encouragement from Chaplain Parrish, Chaplain Tisher, Chaplain Bell and Rev. Oliver as well as support from my friends and fellow worshippers at the Protestant and IGS services on base.
Through all of my experiences I have been feeling a bit of a calling and may actually be looking into working more with the religious services or possibly re-classing as a Chaplains Assistant once I get to Ft. Sam and get situated.
For now I am just focused on how fortunate and blessed that I have been able to touch the lives of so many people and likewise to have been affected by so many people in turn. I apologize that this blog is soo long and has an unusual flow to it, but I have been attempting to write it for some time and have been experiencing several setbacks in the process, namely Destiny, lol. I tried to be as fair as possible and acknowledge as many people as possible. If I missed anyone left anyone feeling overlooked, please forgive me. Thank you for taking the time to read this and I look forward to hearing your feedback on this.
Saturday, October 9, 2010
What it's like.
Hello again, sorry it's been awhile but have had a lot going on and been trying stay on top of everything. In my last blog I explained what happened and how The Dr.s came to discover my tumor. The second thing I get asked the most is how is my treatment going and what is it like? So I have decided to use this opportunity to address that question. First off, I am on a ton of medications that I seem to be taking around the clock, I have alarms to remind me, and Susanna has alarms to remind me, And we both have alarms to remind us to actually check the alarms. I wake up daily at 0600 and take about 10 pills to help me throughout the day. I take antisiezure medication, Steroids to reduce swelling in my skull, which helps with my headaches immensely, anti-vomiting medication, Anti-depressants, Allergy meds, and several more. Then I usually try to go back to sleep, which is often short lived because Destiny is usually up by 0630 and her first order of business everymnorning is to climb on top of me, tell me she loves me, inform me her diaper needs to be changed, and ask me whats for breakfast because she wants some nummy nummy. Of course, Carol is also up around 6 if she hasn't hit snooze on her alarm too many times so I have to poke my head in and check on her, She usually has the dog fed, her backpack loaded and is ready to catch the school bus by 7. So after a hug, kiss and "Have a good day princess" she is out the door and I am working on Destiny's breakfast. Fortunately she takes after me in that department and is usually good to go with some oatmeal, cereal, yogurt
or chorizo & eggs. Meanwhile, Susanna goes over my schedule for the day to make sure we know when all my appointments are and what time we have to leave to get to them, She takes good care of me.
So once breakfast is done I turn on some "Go Diego Go" and start watching T.V. with Destiny in which we spend a good deal of time arguing over which path is the right path to take, man to they encounter a lot of snakes and crocodiles on that show for a Hispanic kid living in South America. but anyways, then Susanna catches me messing around with the kiddo and embarrasses me into getting my butt in gear. I usually have appts. in the mornings up until 12:30.On Mondays I go to the Chemo unit at around 0900 to have my infusion for the clinical trial of Avastin I am participating is as a volunteer. 2 days a week I go to Occupational therapy in the morning to help me relearn and deal with some of the lingering effects of the trauma and surgery I went through. After the surgery I had a great deal of trouble with remember how to do alot of my job task and basic education task like writing or typing and elementary mathmatics. Plus I had been experiencing stress and anxiety issues as well. Many of my facilities have come back slowly but surely and I am doing much better. I have also begin meeting with a trauma counselor weekly to help me learn to adjust to some of the more extreme moods I have been experiencing in the past couple week. I have spoken to my Oncologist as well as my counselor and have learned that some of these feelings and moods I have been going trhough can be attributed to the steroids I am taking to reduce swelling in my brain.
I take my Chemo pill daily at 10:45 and have Radiation treatment at 11:45 Monday-Friday. A lot of people have asked me what the treatment is like and seem to have a poor understanding of Modern radiation therapy, so I am going to break down what one of my sessions are like.
First of, I would like to say that I am very blessed and fortunate to have such a great team caring for me at the Rapid Regional Cancer Clinic. From my Oncologist, to the treatment nurse, Radiation and Chemo nurses, and the variety of modern equipment that is available. The Clinic actually has a few different types of Linear Accelerators. The more common one is a stationary unit in which the patient is positioned in the center of the room, and then the machine is rotated to different positions around the patient in order to administer the radiation dose to the desired area.
They also have Linear Accelerators mounted on a sled. Basically it is a huge machine with a doughnut shaped appearance (similar to an MRI, but shorter and not as dense) and a table in front of it. inside the apparatus the linear accelerator is mounted on an enclosed sled with the functioning beam facing the center of the ring. I lay down on the table and am positioned on a cradle to keep my head as straight and still as possible. Then a plastic mesh mask which has been molded from my face (yes nose and all) is placed over my face and secured to the table to help keep me still. Definitely not a good situation for someone who is claustrophobic. But I seem to do well. Then they start the machine step out of the room, I am slid into the opening until my head is about 1/3 of the way inside. At this point the Linear Accelerater is rotating around my head in circles and preforming a CT scan, which takes about 4 minutes as I am slowly moved deeper into the machine. This allows the machine to do a more complete scan moving me into it while it performs it's scans. Once it's done the table backs out of the LA and the nurse comes in to set it up for the Radiation, which takes a few seconds. Then I am moved back into the machine only this time it is a bit more noisy as it is emitting radiation. With this type of machine, the beam is more condensed and focused. It makes 15 rotations around me and I can tell when the radiation hits the part of my brain because I have an interesting reaction to it. As the beam zaps the left front portion of my brain, i see a blue flashing light, almost like electricity flashing under my eyelids, and I smell a chlorine like smell. then as gets around to the back of my head it zaps me from the right rear toward the left front. When this happens I see a thick white flash at the edge of vision from my left eye. The entire process is about 8 minutes. They give me a small ring to hold onto so I have something to do with my hands while I'm strapped down, and I usually shake it around in the air like a tambourine, or hold it like a steering wheel and make Wii Mario Cart noises while I pretend to be driving. Hey keep me distracted and entertains the people around me.Then I am moved out of the machine and the nurse unhooks me from the mask and I hop off the table.
On Tuesdays I meet with my oncologist after the Radiation therapy and basically discuss how I have been doing, what has been going with me and how my headaches have been, and that's basically it. I have some random appt in the afternoons on some days, And as I get closer to my move to Texas I am sure I going to get much more busy, but for now I am doing well, have responded to the treatment well and have suffered very minimal adverse affects all things consider. Honestly, it's amazing to me. A little over a month ago I was diagnosed with a lethal brain cancer, now here I am writing, reading, laughing and sharing. If I ever needed proof of miracles, I got it. Hope this wasn't too long or boring for every, and for those who stuck it out to the end, thanks for reading. Until next time, Hasta la bye-bye.
or chorizo & eggs. Meanwhile, Susanna goes over my schedule for the day to make sure we know when all my appointments are and what time we have to leave to get to them, She takes good care of me.
So once breakfast is done I turn on some "Go Diego Go" and start watching T.V. with Destiny in which we spend a good deal of time arguing over which path is the right path to take, man to they encounter a lot of snakes and crocodiles on that show for a Hispanic kid living in South America. but anyways, then Susanna catches me messing around with the kiddo and embarrasses me into getting my butt in gear. I usually have appts. in the mornings up until 12:30.On Mondays I go to the Chemo unit at around 0900 to have my infusion for the clinical trial of Avastin I am participating is as a volunteer. 2 days a week I go to Occupational therapy in the morning to help me relearn and deal with some of the lingering effects of the trauma and surgery I went through. After the surgery I had a great deal of trouble with remember how to do alot of my job task and basic education task like writing or typing and elementary mathmatics. Plus I had been experiencing stress and anxiety issues as well. Many of my facilities have come back slowly but surely and I am doing much better. I have also begin meeting with a trauma counselor weekly to help me learn to adjust to some of the more extreme moods I have been experiencing in the past couple week. I have spoken to my Oncologist as well as my counselor and have learned that some of these feelings and moods I have been going trhough can be attributed to the steroids I am taking to reduce swelling in my brain.
I take my Chemo pill daily at 10:45 and have Radiation treatment at 11:45 Monday-Friday. A lot of people have asked me what the treatment is like and seem to have a poor understanding of Modern radiation therapy, so I am going to break down what one of my sessions are like.
First of, I would like to say that I am very blessed and fortunate to have such a great team caring for me at the Rapid Regional Cancer Clinic. From my Oncologist, to the treatment nurse, Radiation and Chemo nurses, and the variety of modern equipment that is available. The Clinic actually has a few different types of Linear Accelerators. The more common one is a stationary unit in which the patient is positioned in the center of the room, and then the machine is rotated to different positions around the patient in order to administer the radiation dose to the desired area.
They also have Linear Accelerators mounted on a sled. Basically it is a huge machine with a doughnut shaped appearance (similar to an MRI, but shorter and not as dense) and a table in front of it. inside the apparatus the linear accelerator is mounted on an enclosed sled with the functioning beam facing the center of the ring. I lay down on the table and am positioned on a cradle to keep my head as straight and still as possible. Then a plastic mesh mask which has been molded from my face (yes nose and all) is placed over my face and secured to the table to help keep me still. Definitely not a good situation for someone who is claustrophobic. But I seem to do well. Then they start the machine step out of the room, I am slid into the opening until my head is about 1/3 of the way inside. At this point the Linear Accelerater is rotating around my head in circles and preforming a CT scan, which takes about 4 minutes as I am slowly moved deeper into the machine. This allows the machine to do a more complete scan moving me into it while it performs it's scans. Once it's done the table backs out of the LA and the nurse comes in to set it up for the Radiation, which takes a few seconds. Then I am moved back into the machine only this time it is a bit more noisy as it is emitting radiation. With this type of machine, the beam is more condensed and focused. It makes 15 rotations around me and I can tell when the radiation hits the part of my brain because I have an interesting reaction to it. As the beam zaps the left front portion of my brain, i see a blue flashing light, almost like electricity flashing under my eyelids, and I smell a chlorine like smell. then as gets around to the back of my head it zaps me from the right rear toward the left front. When this happens I see a thick white flash at the edge of vision from my left eye. The entire process is about 8 minutes. They give me a small ring to hold onto so I have something to do with my hands while I'm strapped down, and I usually shake it around in the air like a tambourine, or hold it like a steering wheel and make Wii Mario Cart noises while I pretend to be driving. Hey keep me distracted and entertains the people around me.Then I am moved out of the machine and the nurse unhooks me from the mask and I hop off the table.
On Tuesdays I meet with my oncologist after the Radiation therapy and basically discuss how I have been doing, what has been going with me and how my headaches have been, and that's basically it. I have some random appt in the afternoons on some days, And as I get closer to my move to Texas I am sure I going to get much more busy, but for now I am doing well, have responded to the treatment well and have suffered very minimal adverse affects all things consider. Honestly, it's amazing to me. A little over a month ago I was diagnosed with a lethal brain cancer, now here I am writing, reading, laughing and sharing. If I ever needed proof of miracles, I got it. Hope this wasn't too long or boring for every, and for those who stuck it out to the end, thanks for reading. Until next time, Hasta la bye-bye.
Friday, September 24, 2010
The day it Happened..and so on.
All right well wishers, loved ones, friends, and dedicated or future fans. Everyone keeps asking me about my tumor and what happened to me and I have told the story almost 100 times. I have decided to write it out (as best I can recall) and put it out in a blog. So that way I can skip the story telling part and go straight to the criticism about my writing style. :p
The short version is I had a POS Care Provider who diagnosed everything as either Migraines or Allergies for the past 8 months. And no, I do not mean to downplay his training or concern, but For the past 3 months in particular, every time I or my family have been in to see him for ANYTHING it is always allergies and when I even mention trying something different He acts like we are trying to get him to dole out medications from his own personal stash or something. And I am not even talking about anything major, I never ask for quarters and even when offered I decline because I just have too much crap to do and often go into work extremely sick at the duress of my Commander and employees because I know the job needs to get done. And the meds I take for my Migraines are mild seizure meds or Vasodilators. And getting antibiotics for a sick toddler should not be such a freaking chore! Plus to get in for a BASIC appt requires almost an act of congress and takes nearly 2 weeks to be seen, but once I am in it's 3-5 minutes and I am on my way. The disappointing part is I had a lot of respect for my PCM when he first arrived, I had fallen and injured my right shoulder in July of last year trying to rescue Destiny from a skateboarding accident, and he had me in, full Rads shot and sent of to DGMC for analysis within a day, diagnosed me with a type 1 AC separation and issued meds enough to keep me comfortable without overdoing it, and got me into Physical Therapy to help me recover faster. By that November I was taking a PT test, not fully recovered, but functional. And he continued to show that care throughout my recover. But in February, his level of care seemed to diminish greatly. I know workload at the MTF is heavy and there are a lot of people who try to skate or get by on light duty, but you can't assume that everyone is trying to, and that's what it begin to feel like, got to the point I didn't even want to bother with medical at all unless I was dying, because it was useless.
But when I started to experience Headaches that were not the same as my usual Migraines about 3 months ago and they begin to occur almost daily, I knew something was wrong. I saw the PCM about it initially and he said it sounded like allergies. So chronic headaches with which bore no similarities to my traditional migraines and occurred on a near daily basis originating near my frontal lobe did not alarm him in the least. Nor did a 3 day Massive headache that required massive amounts of Butorphanol to keep me sedated enough to sleep it off about 2 months ago. But the clincher happened on 18 AUG, I was working and apparently had a mild seizure due to intracranial swelling, nothing grand mal but I was having trouble remembering passwords, how to operate computers, just major brainfarts that lasted almost half an hour and tinglining in my finger tips. My CPT was preparing to deploy and we were down 2 staffers so I was more concerned about getting work done and did not even think that there was anything seriously wrong. After it wore off I was fine and finished the day. Next day was no problem until the evening was filling out some counseling's before bed and had another episode, but no one was around so didn't realize it, lasted almost an hour. On Friday had Dr. Appt and was told allergies were bad this year and changed my allergy meds, told to give that a shot to see if would help with headaches. I told Dr. about CPT deploying and getting a new reservist while she was gone and not being able to afford having headaches and taking time off for sick call, and asked if he had a plan for alternate care or possibly a neurological consult and he said he feels the allergies will fix it but needs about 3-5 weeks before we see a change. So I said all right. A few hours later I had the brain fart again, only worse. Was filling out counseling's and just froze, spent 10 minutes flipping through applications trying to find one that looked familiar and nothing. So went to fridge to try and see if that would get the wheels turning, nothing, so I knew something was really wrong. I went into the hallway lookingg for help and was so out of it, just stared vacantly, looked right into the Surgery room and no one was there, then left into prep room and saw my NAF Veterinarian and receptionist talking and decided that was where I needed to go because there was people there. I just trudged in and said "I think there is something wrong with me, Something is just not right" and they asked what. I said I don't know, I can't remember things or how to do things, I just don't feel right" And they asked if I was having a stroke. "I don't think so, I can move and talk and I know what's going on right now, but I just can't remember things and am having trouble functioning" so they sat me down and called my wife. after a bit I got a little more coherent and started trying to work again, but was a little difficult still. I could not remember my wife's number so they had to look it up on the recall roster. I had to call the Appt line and try and get back in and they had nothing and were going to make me wait until Monday until I mentioned the tingling fingers and possible neurological signs, then they told me to go to ER, which is about 16 miles away from base. My wife got me and as we got off the freeway, my PCMs nurse called and asked what was going on, I told her what was happening and she tells me it doesn't sound like an emergency but that I was experiencing a type of migraine and I should come back to base to be seen or go to the off post clinic. I told her that I have had migraines since 2003 and nothing like this ever, so she put me on hold to talk to the Dr. 3 minutes later he gets on the phone (by now I am at the ER and in the parking lot waiting on the phone), and he tells me the same thing. By now I am so out of it and tired of phones and people I just want to go home and sleep, so my wife grabs the phone and ask "If we come back in there, what are you going to do for my husband, he's already told you what's wrong with him 3 times." and he said "well, we have pretty much done all that we can, but I just don't see what the ER is going to do that we haven't already done." and she said "we are already here and we have an authorization, can we be seen or not. " and he said "If you really feel its necessary I'll authorize it" and she said "Thank you" and hung up on him. So I was admitted and they pulled labs, everything normal, then a cat scan and they saw some artifacts, so wanted to do MRI just to be safe. Ran MRI with and without contrast and found a small mass with lots of swelling on my left parietal lobe. So I was admitted on the spot to Critical care, and started on Pred, Dex, and Insulin plus all sorts of nausea and pain meds. on Monday the 23 I underwent 3 hours of brain surgery to remove the mass, once it was out the Neurosurgeon immediately identified it as a class 4 glioblastoma, before it was sent out to the lab, but their results confirmed it. From what I have gathered they are the nastiest form of cancer you can get and those who have them usually experience a return with 3months to a year, which by then it is usually fatal.
That being said I am younger than the average patient diagnosed with this (usually people in their 60s) and in very good health. I have been recovering well from the surgery and am responding well to the treatment. I am currently undergoing Chemo therapy (Temadar) daily in conjunction with Radiation treatment Monday through Friday for 6 weeks (started last Friday, so almost 2 weeks down now and so far so good). And I am volunteered to participate in a clinical research for a drug called Avastin and I begin a week from Monday.
So much for the short version, huh? Sorry was so lengthy but had a lot to get out, plus I did suffer a little loss of my mental facilities after the surgery and am getting them back little by little each day, so I am enjoying the fact that I can still write. I begin occupational therapy on Tuesday and hopefully Will be writing much better and more coherently before long. Trust me, a couple weeks ago was all I could do to make a short entry on FB, now I can carry conversations and even text on my own. Yay me! Until next time, hasta la bye-bye.
The short version is I had a POS Care Provider who diagnosed everything as either Migraines or Allergies for the past 8 months. And no, I do not mean to downplay his training or concern, but For the past 3 months in particular, every time I or my family have been in to see him for ANYTHING it is always allergies and when I even mention trying something different He acts like we are trying to get him to dole out medications from his own personal stash or something. And I am not even talking about anything major, I never ask for quarters and even when offered I decline because I just have too much crap to do and often go into work extremely sick at the duress of my Commander and employees because I know the job needs to get done. And the meds I take for my Migraines are mild seizure meds or Vasodilators. And getting antibiotics for a sick toddler should not be such a freaking chore! Plus to get in for a BASIC appt requires almost an act of congress and takes nearly 2 weeks to be seen, but once I am in it's 3-5 minutes and I am on my way. The disappointing part is I had a lot of respect for my PCM when he first arrived, I had fallen and injured my right shoulder in July of last year trying to rescue Destiny from a skateboarding accident, and he had me in, full Rads shot and sent of to DGMC for analysis within a day, diagnosed me with a type 1 AC separation and issued meds enough to keep me comfortable without overdoing it, and got me into Physical Therapy to help me recover faster. By that November I was taking a PT test, not fully recovered, but functional. And he continued to show that care throughout my recover. But in February, his level of care seemed to diminish greatly. I know workload at the MTF is heavy and there are a lot of people who try to skate or get by on light duty, but you can't assume that everyone is trying to, and that's what it begin to feel like, got to the point I didn't even want to bother with medical at all unless I was dying, because it was useless.
But when I started to experience Headaches that were not the same as my usual Migraines about 3 months ago and they begin to occur almost daily, I knew something was wrong. I saw the PCM about it initially and he said it sounded like allergies. So chronic headaches with which bore no similarities to my traditional migraines and occurred on a near daily basis originating near my frontal lobe did not alarm him in the least. Nor did a 3 day Massive headache that required massive amounts of Butorphanol to keep me sedated enough to sleep it off about 2 months ago. But the clincher happened on 18 AUG, I was working and apparently had a mild seizure due to intracranial swelling, nothing grand mal but I was having trouble remembering passwords, how to operate computers, just major brainfarts that lasted almost half an hour and tinglining in my finger tips. My CPT was preparing to deploy and we were down 2 staffers so I was more concerned about getting work done and did not even think that there was anything seriously wrong. After it wore off I was fine and finished the day. Next day was no problem until the evening was filling out some counseling's before bed and had another episode, but no one was around so didn't realize it, lasted almost an hour. On Friday had Dr. Appt and was told allergies were bad this year and changed my allergy meds, told to give that a shot to see if would help with headaches. I told Dr. about CPT deploying and getting a new reservist while she was gone and not being able to afford having headaches and taking time off for sick call, and asked if he had a plan for alternate care or possibly a neurological consult and he said he feels the allergies will fix it but needs about 3-5 weeks before we see a change. So I said all right. A few hours later I had the brain fart again, only worse. Was filling out counseling's and just froze, spent 10 minutes flipping through applications trying to find one that looked familiar and nothing. So went to fridge to try and see if that would get the wheels turning, nothing, so I knew something was really wrong. I went into the hallway lookingg for help and was so out of it, just stared vacantly, looked right into the Surgery room and no one was there, then left into prep room and saw my NAF Veterinarian and receptionist talking and decided that was where I needed to go because there was people there. I just trudged in and said "I think there is something wrong with me, Something is just not right" and they asked what. I said I don't know, I can't remember things or how to do things, I just don't feel right" And they asked if I was having a stroke. "I don't think so, I can move and talk and I know what's going on right now, but I just can't remember things and am having trouble functioning" so they sat me down and called my wife. after a bit I got a little more coherent and started trying to work again, but was a little difficult still. I could not remember my wife's number so they had to look it up on the recall roster. I had to call the Appt line and try and get back in and they had nothing and were going to make me wait until Monday until I mentioned the tingling fingers and possible neurological signs, then they told me to go to ER, which is about 16 miles away from base. My wife got me and as we got off the freeway, my PCMs nurse called and asked what was going on, I told her what was happening and she tells me it doesn't sound like an emergency but that I was experiencing a type of migraine and I should come back to base to be seen or go to the off post clinic. I told her that I have had migraines since 2003 and nothing like this ever, so she put me on hold to talk to the Dr. 3 minutes later he gets on the phone (by now I am at the ER and in the parking lot waiting on the phone), and he tells me the same thing. By now I am so out of it and tired of phones and people I just want to go home and sleep, so my wife grabs the phone and ask "If we come back in there, what are you going to do for my husband, he's already told you what's wrong with him 3 times." and he said "well, we have pretty much done all that we can, but I just don't see what the ER is going to do that we haven't already done." and she said "we are already here and we have an authorization, can we be seen or not. " and he said "If you really feel its necessary I'll authorize it" and she said "Thank you" and hung up on him. So I was admitted and they pulled labs, everything normal, then a cat scan and they saw some artifacts, so wanted to do MRI just to be safe. Ran MRI with and without contrast and found a small mass with lots of swelling on my left parietal lobe. So I was admitted on the spot to Critical care, and started on Pred, Dex, and Insulin plus all sorts of nausea and pain meds. on Monday the 23 I underwent 3 hours of brain surgery to remove the mass, once it was out the Neurosurgeon immediately identified it as a class 4 glioblastoma, before it was sent out to the lab, but their results confirmed it. From what I have gathered they are the nastiest form of cancer you can get and those who have them usually experience a return with 3months to a year, which by then it is usually fatal.
That being said I am younger than the average patient diagnosed with this (usually people in their 60s) and in very good health. I have been recovering well from the surgery and am responding well to the treatment. I am currently undergoing Chemo therapy (Temadar) daily in conjunction with Radiation treatment Monday through Friday for 6 weeks (started last Friday, so almost 2 weeks down now and so far so good). And I am volunteered to participate in a clinical research for a drug called Avastin and I begin a week from Monday.
So much for the short version, huh? Sorry was so lengthy but had a lot to get out, plus I did suffer a little loss of my mental facilities after the surgery and am getting them back little by little each day, so I am enjoying the fact that I can still write. I begin occupational therapy on Tuesday and hopefully Will be writing much better and more coherently before long. Trust me, a couple weeks ago was all I could do to make a short entry on FB, now I can carry conversations and even text on my own. Yay me! Until next time, hasta la bye-bye.
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