Some weeks ago, I signed up for email updates from QualityHealth. I completed a survey about my medical conditions/symptoms. Since then, I have received many emails with useful information tailored to my specific needs.
These newsletters focus on ways to help your symptoms that you can do at home. They also include any news related to your specifics. They include coupons/healthy offers and guidebooks that can be printed for free.
Today as I read through my newsletter, I noticed a section called “Share Your Story”. It reads:
“Become a Health Hero
Have you or a loved one survived a life threatening disease? Are you currently struggling with arthritis or other health conditions? Tell us about it.”
Those of you who are struggling with a life-changing or life-threatening disease, please consider telling your story. You may help someone else by doing so.
Two years ago, my 35 year old brother died of a brain tumor that he battled for almost 4 years. It started as a Stage 2 Astrocytoma. During his initial awake brain surgery, they got most of the tumor-all they could get without compromising his ability to communicate.
His cancer was under control for almost 3 yrs. His MRIs looked good,even the one he had in January 2008.
Then he started to develop symptoms again. Extreme dizziness, odd behavior, and migraine headaches led us all to believe that his tumor may have begun to grow again. This was in April 2008. A call to his doctors at the Preston Robert Tisch Brain Tumor Center resulted in an immediate appointment there.
His new MRI showed that his tumor had completely, aggressively grown back. Dr Friedman scheduled an immediate surgery and biopsy. Alan did well with the second awake brain surgery and we were hopeful once again. However, the biopsy of the tumor revealed Stage 3 and Stage 4 cells. The tumor was now categorized as a Glioblastoma. The average extra years for a Glioblastoma patient was 5yrs.
Alan started an aggressive treatment plan which, at the time, was new. In fact, Duke University’s Robert Preston Tisch had one of the only machines in existence at the time. This state-of-the-art treatment included two different chemotherapies and the use of the aforementioned radiation machine. The treatment was overseen by Dr. John Kirkpatrick and through this video link you can learn more about this exciting development. http://www.dukehealth.org/health_library/video/state_of_the_art_cancer_treatment_novalis_tx_at_duke
Despite radical, aggressive treatment, the tumor returned again and the brain cancer spread to form other tumors in the brain. By the beginning of December, his doctors offered to switch Alan to a comfort/pain management/quality of life treatment program. Essentially, they were preparing us for the inevitable. Alan, unwilling to simply surrender to the cancer, opted to continue chemo and other meds until the very end.
Our last Christmas with Alan was very bittersweet because we knew there would be no more holidays to share. He was sick and felt terrible the whole day. He couldn’t eat and was no longer his jovial self. From that point on, his condition deteriorated a little every day. He reached the point at which he could no longer walk, had to be helped to use a bedpan or urinal container. He had to have a hospital bed. Mom became fearful that he would try to get up during the night and would fall out of the bed, so she laid on the couch at the end of his bed and barely slept.
When he reached the point of not knowing what was going on, I convinced Mom to call in Hospice. He was moved there within 24 hours and died about a week later on February 10, 2009. We were all at his bedside along with the pastor and two of Alan’s best friends. Alan and I were very close. I spent most of the next year deep in grief that would sneak up and engulf me at times.
I still miss him so much and pray that there will be a day when no one else’s family must suffer for this. That is why I try to keep abreast of advances in treatments for brain cancer. It is why I encourage people to know what is available to them or their family in case, God forbid, you should ever need to know.
Due to my illness and disability, I have developed an addiction to television… nightly shows to be exact. I have my DVR programmed to record all of my favorites in case: they conflict with another show, they conflict with a sporting event I want to watch, I happen to be taking a bath when they are on, etc… I have even been known to have two shows recording while I am watching a third show/sport/event on my bedroom tv. I would say that qualifies as addition, wouldn’t you?
Although the shows change with the season, right now these are my must watch. Mondays are for Dancing with the Stars. I have been a fan since Season 4 when I started watching with my late brother. It wasn’t hard to get hooked since I am a self-professed competition junkie. Since I was already watching Dancing on ABC, it wasn’t hard to get hooked on Castle, which follows. Then, CBS added the newly revamped Hawaii Five-O to their 10pm time slot. With all of the pre-season hype, I had to watch, and I am so glad that I did.
Tuesdays? Obviously, Dancing with the Stars elimination show. I mean, how could I not see who leaves the show? No Ordinary Family is an interesting addition to precede Dancing. It is different and so far I have enjoyed the story progression. For many years, NCIS has been one of my favorite shows. Then to my pleasure, NCIS: Los Angeles was conceived and brought to life. I never missed an episode even before DVR. Also, new to the schedule this season, ABC added Detroit 1-8-7 to the 10pm time slot. This is a very genuine feeling cop drama that is really fleshing out the characters very well. I hope it continues to meet the standards it has already established.
On Wednesdays, my favorites include one fantastic returning show and two new additions. New to television this season is the J.J. Abrams drama Undercovers. It has a definite serious side, but it is delivered with a light touch which makes it very enjoyable to watch. I haven’t seen it in a while & hope it hasn’t been cancelled. Also new to the NBC lineup is the new Law & Order: Los Angeles. This addition to the Law & Order legacy brings a different feel with the same great drama for which the franchise is well known. To round out Wednesdays, Criminal Minds returns. YEAH!
Thursdays are for S…! My Dad Says, Grey’s Anatomy, and Private Practice. Thursdays have also included Project Runway. I can’t wait for it to come back.
Fridays? CSI:NY and Blue Bloods. The weekend is a sports bonanza with College sports (and NFL Sundays, PLEASE). Oh, and Sundays also include The Amazing Race when in season and Army Wives. Don’t forget, HGTV provides House Hunters several times a week.
I can admit my addiction, but I don’t want to give it up. The characters I have come to love. For 30 minutes or an hour, they are very real to me. I get involved in their lives and lose myself for a while forgetting my own ills and pains. If this qualifies as addiction, I don’t mind. 🙂
Besides treatments, good friends are the best medicine I have. I’ve found that by simply talking to, and spending time with, my friends leads me to happiness and a desire to push myself toward being the most whole person I can be.
While I realize that many of my “gifts” from Lyme disease will be permanent, I have realized that my state of mind is crucial to living the best life possible for me.
My good friends have shown me that. They have made me want to advocate to help others before they reach the place I am in. Don’t push away your friends because “you don’t want them to see you like this.” For a long time, I did just that. Now that I have overcome the embarrassment of my physical condition (somewhat), I’ve learned that friendship can do almost as much to save me as the medicines to which I owe my life.
At least the government in British Columbia finally gets it.
They now admit that Chronic Lyme disease is real and that Lyme disease is the fastest growing infectious disease in North America.
If only our own government in the US would do the same. There are countless victims here suffering the effects of Chronic Lyme and the associated co-infections. Many of them have no way to pay for costly treatments and continue to get worse while insurance companies refuse to pay.
Most people don’t have a clue about the dangers associated with this terrible disease. Most people don’t realize that it can, and has been, deadly.
More has to be done to educate the public, and most general practitioners, as to the dangers. More has to be done to make our own government see what British Columbia has finally admitted. This threat is real. Citizens of our country are suffering and something must be done.