I’ve been thinking a lot lately about this blog and it’s purpose: why I’m here? I think it began with the idea of reaching out to other survivors to help and inspire but morphed into a way to practice writing about all sorts of topics, essentially it became more selfish and less focused on reaching out to readers. This has manifested itself in how seldom I actually write – waiting for some kind of inspiration instead of writing what the cancer survivor and their caregivers want and need…hope. The only significant reason for someone dealing with cancer to read this blog is to gain the undeniable belief that we can live well with cancer. For whatever reason, when we hear of someone who has died from cancer, we compare ourselves to them rather than looking at those who continue to survive with hope and belief in our own strength. This is ultimately why I am here, to give all those affected by cancer a reason to hope and a belief that they can be in that percentage that survives, because it exists – there is no 100% mortality rate, many people survive, why not you along with me?
This philosophy hit me as I was golfing last week and now I see it applies to so many aspects of life and especially living well with cancer. As it pertains to golf I have finally realized that no matter what the shot, solid contact is equally important as good form and effort. The ball will never go where or as far as you want without hitting it well, no matter how much you try or how hard you swing. It has taken many years since my diagnosis to play decent golf again as my strength, coordination, and focus are all a bit diminished, but I play on anyway. Now with my new found mantra – solid contact, I have a new focus on the course and played my best round in years last week. Of course there must be, in equal parts, solid effort and determination.
This should be fairly obvious to golfers but less so as it pertains to cancer survivorship so hopefully I can make that leap. Just as there is not only one way to swing a golf club, there is not only one way to treat cancer. Whether you choose to go the traditional medical route – as I did, or choose some alternative form of treatment such as immunotherapy or holistic remedies, the same philosophy remains critical. The approach and plan need to be as solid as your belief and determination. In other words, I don’t believe it is enough to simply fight hard if your efforts do not make a solid impact on the cancer. I do believe in the power of our immune system and that it can help fight cancer but all the vitamin C and antioxidants in the world will not help me survive if they don’t kill tumor cells effectively. If whatever treatment or combination of them you choose kills cancer cells and you have the fight and the will to go through them, then living well with cancer is totally possible.
Simply put, if your golf ball doesn’t go far enough, don’t swing harder swing better. If your cancer treatments aren’t working, find one that does and believe in it and follow through. This is my new belief and it will not only keep me alive long enough to become, but will also help me become a better golfer
Life is long – measured in years and decades – we have a lot of time to make our lives what we want, to impact others. It is our days which are short. Minutes and hours easily slip away. Today is over before you know it, did you value it, make someone else’s better or did it just waste away unremarkably?
It takes some effort to make a valuable, memorable day. Even more is required during times of illness or poverty. I have given away numerous days when both money and energy were sparse from fighting cancer. Many, however, have been turned more valuable by knowing that I and many others are surviving this dreaded disease. Every clean MRI, birthday, and anniversary for anyone surviving cancer and their supporters is cause for celebration and reflection on a life well spent. My doctor’s office has been the sight of many hugs and high-fives! This part of my life has been short so far but will be long in the end I know.
Limit the number of days and hours you give away when nothing good happens, although some are inevitable, and your years will last longer and life will not feel short but rather long and memorable. It is when poorly spent days become the norm that life feels like it’s getting short and we’re not accomplishing what we want.
None of us gets through cancer alone, we need help and support from family and friends and the many online sources of informtion and inspiration. Sometimes just knowing other people who have gone through the same thing as you can be huge for your belief in your suvival. One of my favorites, particularly for brain tumors is The American Brain Tumor Association: http://www.abta.org/
Your best place to go for all things cancer, especially research is the American Cancer Society. My sister a few years ago for Christmas gifts made donations in all of our names. I strongly encourge you and your caregivers to go to this site, do your research and find ways to get involved like with the “relay for life”.
I also happen to be a huge fan of and draw enourmous strength from Lance Armstrong. I have worn the same Livestrong yellow bracelet since the day I was first diagnosed 10 years ago. My brother and I particularly enjoy giving gifts of Livestrong gear as the stuff is very cool, I even wear Livestrong Oakley eyeglasses, and 100% of the proceeds after expenses goes to support survivor programs so you can feel good about helping your fellow survivors and look good doing it.
I think my new favorite organization for cancer rsearch is Stand up to Cancer. This is their mission statement, Stand Up To Cancer is a new initiative created to accelerate groundbreaking cancer research that will get new therapies to patients quickly and save lives. SU2C’s goal is to bring together the best and the brightest in the cancer community, encouraging collaboration instead of competition. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort. This is where the end of cancer begins. When we unite in one unstoppable movement and Stand Up To Cancer.
These are all great resources for information and ways to donate for research but just as important we need places to go for inspiration on those dark days when you feel alone or like it’s too much to bear. This makes me cry every single time I hear it, including right now and especially when I heard it live this past summer. Melissa Etheridge ” I Run For Life”
Of course when I really feel like getting emotional and inspired, I revisit the speech by the late great Jim Valvano
“Don’t give up, don’t ever give up” – Jim Valvano.
These are a few of my favorite websites and songs and words that serve as inspiration or just information when needed. I would love to hear from you with any of your favorites that I can check out. We all stand together in this fight.
I never thought I would be my own boss and go to work for myself from home, I thought that working a full-time job in spite of having brain cancer kept some normalcy in my life and hard work was to be admired. This thinking backfired on me as it only kept me away from my family and made me extremely fatigued so that when I was home with family I was often too tired to have quality time.
Then in Arpil an opportunity came along which greatly improved my health, happiness, and income potential. I found a product which could help prevent tumor growth, ” Protandim, a combination of 5 well-studied medicinal plants, was given via dietary administration and significantly decreased tumor incidence and multiplicity by 33% and 57%, respectively. These studies suggest that alterations in antioxidant response may be a novel approach to chemoprevention. This paper focuses on how regulation of antioxidant expression and activity can be modulated in skin disease” – from a study on Protandim and cancer by Louisiana State University.
At this same time I was also able to leave my job and go to work from home as a distributor for Protandim enabling me to be at home spending quality time with family, enjoying holidays and weekends again. The timing in my life was perfect as I believe that my health and happiness were in serious peril which coincided with the timing of the business opportunity with Protandim. Not only is this a chance have a home-based business but also to help people improve their health and finances. I feel better, spend time with my wife and dog, and have time and freedom to exercise, read, and write this blog.
Nobody can tell me what I’m worth and that they need me for 40 hours a week more than my wife does.
The timing and trends in the economy and the world scream home based business ownership and particularly network marketing. This is the opportunity for the average person to make residual income – get paid for the rest of your life on the work you do today! Whether you have the entrepreneur spirit and want you own business or not and you prefer to stay an employee, this supplement is the most important one you can take to potentially increase your longevity. I can help you get wholesale pricing if you only want the product or I can also help you into the business and show you how to succeed.
So if you’re like me, your various treatments and recovery from surgeries can leave you extremely fatigued. Not only did fatigue make it very difficult to keep up a full-time job and have any kind of quality of life, but I also suffer from some cognitive deficits in memory and attention. While I really struggled coming to terms with applying for disability and staying home from work, I quickly realized that others in my situation had been approved and that it was the right time to focus on my health and spending time with family. I also learned of a list called compassionate allowances http://www.ssa.gov/compassionateallowances/which is a list of diagnoses that essentially are fast- tracked for approval without having to hire the lawyers you see from all the ads trying to tell us that we need them to get disability benefits. My diagnosis has progressed to a grade IV astrocytoma or GBM which is on the list so if you are in a similar boat I encourage you to check out that list and just investigate it should you decide to stop working and have a doctor’s approval. The process is long, involved, and frustrating but once I finally trudged through it all, my acceptance time was fairly short.
Medicaid on the other hand has been taking an unbelievably long time to come to a decision. If you do find yourself in my situation of not having health insurance and requiring out of this world expensive treatments, Medicaid is actually quite a good option, however give it plenty of time for your application to get processed and a decision to be made. Hopeffully your state works through the applications faster than mine. I also advise checking in with the department of workforce services about the status of your application even after you think you have provided everything they have asked for. I thought that my application was complete until there was no decision by the time I was expecting so I called and was informed they were waiting for more information from my doctor and I still don’t have a decision.
What motivates a person to start a blog or write anything assuming that other people will care about what you think and write about? I suppose that earning money is often the impetus behind the writing. This is not to disparage such motivation, but others, like me, simply write for the joy of putting down their thoughts through their love of language. I also write in hopes of inspiring those in need of hope of living a good life with cancer. perhaps one of you reading this will think that, if that guy can do it, so can I, the it being whatever you want be it surviving cancer, writing your own blog or novel, or traveling the world. I also write when inspired. On any given day I may hear a song, read a poem, or witness something that starts the flow of words in my mind and I must,underline must, write about the inspiration. Some days it may be a blog post like this one for public consumption, brought to mind by Walt Whitman this morning – a constant source of inspiration as you will come to find. Other times the words will come out in a more poetic form – usually inspired by a song or a movie quote. And now late afternoon nap time calls and my desire to write is no match for the lure of the nap, surely he subject of a future post.
I had always thought that RV camping or truck camping was for sissies and not real camping at all. I’m not sure if it’s the multiple brain surgeries or just getting older that has made me appreciate the comforts of not pitching and sleeping in a tiny backpacker’s tent. Either way, putting a shell on my truck has given me a new-found flexibility and ability to camp on shorter notice and in colder temperatures.
Case in point my wife,dog and I left for the desert after she got off work and arrived well after dark, too late to go to any state park campgrounds, which worked out for the best as we simply pulled off on a dirt road and jumped in the back to sleep for free in complete solitude. As an added bonus, we awoke in the morning surrounded by red rock cliffs ablaze with the rising sun. Oh my God we had no idea when we arrived in the dark what a stunning spot we had lucked into. Yes we are now truck campers along the open roads in the mountains and deserts of this great land.
“Afoot and light-hearted I take to the open road,
Healthy, free, the world before me,
The long brown path before me leading wherever I choose.”
Perhaps I should have looked further when the nuerosurgeon showed up at our consult wearing golf clothes…either just in from the course or itching to get out and play. My oncologist had referred me to him so he was no doubt an excellent surgeon, as I suspect most brain surgeons have to be to stay in business. Unfortunately his personal skills and bedside manner left much to be desired as I would come to find.
This begs the question of how to pick your surgeon? I suppose that the most imortant qualification is the technical skill required to perform a successful operation. The quality of after-care is secondary but a good balance would be ideal. Recovery from my most recent of four surgeries was especially difficult and my surgeon seemed to always want to be somewhere else during our office visits. His answers were short and almost comical at times. I had a hard time dealing with a lot of pressure in my head any time I would cough, sneeze, laugh, or bend over. This was one of the more uncomfortable post-operative side effects and one which I often brought up with my surgeon. His response was always short and generally in the form of, “that’s to be expected” or “try not to do the things that make it worse.” I though it was just a joke where the doctor tells the patient not to do something if it hurts. Never once did I get an explanation or idea of how long this unpleasantness would last. So not only did the doctor disappoint in care during recovery but i also suffered a post-operative stroke and was left with some physical and cognitive deficits, leaving me to wonder if I should have picked different surgeon or rather be thankful that he kept me alive and removed most of my tumor.
My doctors have told me that I am a boring patient, not in personality mind you, but in my ongoing battle with cancer. Every two months I have a brain MRI to check on any potential tumor growth. Every two months I then visit my doctor to go over the boring scans – no change, no active tumor cells, only scarring from surgeries – boring thank God. We then do a neuro check which I have no prolems with and he ask me about any new or worsening symptoms. The only problems I have are mild seizures, maybe one a month, and occasional numbness in my left leg and arm. I walk out the office with my beautiful wife, smiling and thrilled to be stable and boring!
When it comes to cancer – boring is the way to be, after that first clean MRI showing a shrinking or non-existent tumor then no news is good news. I look forward to those two month affirmation of a brain without a tumor, boring medically but so exciting personally and for my family.
mybraincancer 