Sharing Knowledge Gained

Good morning and happy Tuesday to you all! We have been given the gift of another day, and it’s truly a blessing. Tell those you love what they mean to you, and spend your day enjoying your life. Take a moment during your busy day and call someone you care about to tell them how important it is to have them in your life. Life is precious and delicate. Don’t take it for granted. Don’t put the emotional and satisfying items off. Most importantly, don’t expect tomorrow to always be there. Set aside your pride and the tangible items in your life for a moment to express the indescribable, emotional feelings you normally would not share. Selfless acts of kindness are what makes this world a great place to live.

We have been blessed on many different fronts in this journey.  The greatest blessing, by far, is the support group we have gained.  More specifically, the team I am able to bring with me to each consultation, to each hospital stay no matter where in the country, and to do continuous research for my disease while I am under the weather.  I am not speaking of the oncologists or surgeons although they are very important too.  I am referring to my Aunt Jodi (a physician), my mother (a nurse), and my wife (well versed in medical knowledge and hospital workings).  Together, we are a great team of researchers.

I cannot reiterate enough the importance of doing your own research.  The technology, unfortunately, is not sophisticated enough to make all information available in a single spot.  Furthermore, the realm of information, treatments, and paths taken in cancer treatment is changing faster and faster everyday.  Your doctors care about you, but you have to remember how many patients they have to care for.  Being well versed and educated for each appointment and treatment not only aids in your involvement, but may plant a seed in your doctor he/she might not have thought about yet.

This blog is dedicated to some of the research we have come across, and good websites that must be visited by all cancer patients.  If you know somebody with cancer, PLEASE share this information with them.  Please share this on whatever medium you have available.  With cancer, energy spend on researching is energy wasted from recovery.  Not everyone has a doctor and nurse at their side constantly researching and learning on their behalf, and I realize what a wonderful blessing this is.  Therefore, it is my responsibility to share what we have learned and gained so far.

Proton Therapy
Proton therapy is very different than traditional IMRT radiation. It is more precise and far less cholateral damage is expected, if any. There are not many centers available in the US, so they are selective to those only whose condition would greatly benefit from protons. This includes brain, thoracic, neck, and prostate to name a few. It is geared towards younger individuals due to the expected long life and less radiation exposure. They are very well educated doctors and well versed in both IMRT and Proton therapy. They are honest and forthcoming because they know time is of the essence. Best thing to do, at the very least, is call or send an email to see if proton therapy would be right for you. DO NOT just ask your local radiology oncologist. Ours was not informative, and we were very glad to consult with the Proton center.  They are VERY accommodating to every situation, question, and concern.  Please contact me also if you have any questions. 517 242 8146

Proton Therapy Financial Assistance
The ProCure Cancer Foundation is a wonderful organization who is fully committed to making your treatment stress free from a financial viewpoint. Since there are not many proton therapy centers available right now, relocating for 7-8 weeks, at most, would be very difficult. They realize this and offer a lot of help financially with funds for accommodations, food, transportation, etc. If proton therapy is deemed beneficial for you, please don’t look over this foundation! Any questions, feel free to contact me. 517 242 8146

Foundation One Molecular Testing
Foundation One is on the cutting edge of science and cancer treatment. Here is a short synopsis of what they do (Foundation Medicine Fact Sheet)  In the future, genetics is where I believe cancer treatment will be in diagnosing and treating the disease. They are able to take a tissue sample of an excised (surgically removed tumor) and test for specific and all markers. After which, they give you a print out of what was found, match it up to current treatments being used for that marker, current treatments in other cancers with that marker, and any clinical trials ongoing. They do this for each marker found. We received our findings the other day, and it was amazing what can be done in medicine. Furthermore, your findings stay on record and will reflect any new treatments that present themselves. They are very easy to work with! Currently, it costs 5500 to do. At the time I submitted my tissue sample, they had a promotion called “Insight Survey”.  Unfortunately, they are no longer offering this promotion.  However, they have many avenues to help pay for this testing.  Here is a PDF file with billing inquiries and contact information (Foundation Medicine Billing Guidelines)  Your physician may very well not be familiar with this specific organization. Do not let them talk you out of it. Here is a copy of my results from this organization (Ryan Foundation Medicine Results)  The testing revealed my tumor expresses a protein not normally associated with angiosarcoma.  It’s one more treatment we can add into our arsenal.  The company is VERY helpful in answering every question you may have. Again, call me with any questions 517 242 8146

National Institutes of Health – Clinical Trial Database
This website is priceless when it comes to cancer and you and contains a wealth of information. Every clinical trial that receives funding is registered, and every registered clinical trial can be found in a central location. This website is exactly that. It describes, in depth, where and what is being conducted, how far along the trial is, etc. I cannot emphasize enough how important it is to line your pockets with treatment options. They may not all work, and it will be ultimately up to your oncologist to decide, but you never want to run out of options. It is also important, as a side note, it is important to have at least TWO specialists on your cancer to be involved in your care. One will be the primary but will consult with the other. You can never have too many cooks in the kitchen when it comes to cancer, but always have a central person for your care. In other words, they will be making the decision to best suit you after consulting with all your other doctors.  Call me with any questions.  517 242 8146

Angels of Hope – A Family Cancer Foundation
This is a wonderful foundation who is dedicated and committed to helping families deal with the financial aspects of cancer and it’s long treatments. It is for Michigan residents, but I am sure each state has a similar, if not many, organizations such as this. I believe they started out geared towards children, but have since expanded to adults who have been diagnosed and have a family. They are a small, devoted group of individuals who are very good at what they do. They are very nice and extremely helpful. As I write this blog, I am currently in the process of applying for assistance through them. Regardless, they have been most helpful in all of my questions. If you have any question, please don’t hesitate to contact me too. 517 242 8146

Bluebird Cancer Retreats of Mid-Michigan
This is a wonderful organization in West Michigan to help individuals and families cope with the difficulties of cancer. They are very informative and truly care about our well being. The further we go along on this journey, the more we realize how important it is to talk to people in a similar situation about our thoughts, fears, and emotions. It is refreshing to know our feelings are not unique. The retreat allows couples, families, and individuals to learn from each other in a very relaxing environment. It allows everyone to escape reality and refresh their mind, body, and spirit. Since the site is currently down, my point of contact is Renee Denslow and her phone number is 616 847 0839. If finances are an issue, they can and often do sponsor families for the weekend. If you have any questions, please feel free to contact me also. 517 242 8146

Informative Books We Have Enjoyed

I’m Not Lance!:  A Cancer Experience and Survival Guide for Mere Mortals
by Scott P. Alcott
When you have cancer, you get a ton of Lance Armstrong items, but that is okay. He did a remarkable things and beat the odds. However, most of us are not Lance Armstrong. His body is well conditioned and he is in exceptional shape. So what about the rest of us? This book discusses many of the emotions and coping a “normal” person goes through. Like Lance, the author has beaten the odds.

Anticancer, A New Way of Life
by Dr. David Servan-Schreiber
To me, this book is just my style of reading. It can get a little technical at times, but I prefer that. He goes in depth and backs up with research. His suggestions are all common sense, but they are issues we don’t think about often. When you are undergoing cancer treatments, there are many things that can possibly help potentiate the efficacy. A phrase you here often is “if anything else, it cannot do any harm, and it is good for you.” The author did the remarkable and unthinkable feat of defeating an aggressive brain cancer for 20 years! It changes your way of thinking about what we consume. I have gone 100% in dedicating our intake of what we consume to many of the suggestions he makes. It’s a great book, and well worth the read!

 

Again, please take the time to share this information with as many people you know.  It may help no one, a few, or many, but they will not know unless they receive the information.  Knowledge is power.  We are all in this together, and this definitely includes people in a similar situation as our own.  We are one big family.  Thank you for your help!  Without you, this would just be myself talking to myself in a blog!  :)  Have a wonderful day everyone.  We truly love you all!  :)

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2 Responses to Sharing Knowledge Gained

  1. Barb L says:

    Thanks, Ryan. I printed all of this to share with Zach’s family. 😉 Have a great day!!

  2. Kalen Fitch says:

    Ryan,
    I ended up on your page via a prayer chain running around Facebook. I spent about 30 minutes paging through, but likely will need to come back to review more. You are a rock star when it comes to sharing information. I can tell it is important for you to help others, so I wanted to let you know, you absolutely are helping.
    I am part of my little sister’s “team” as you say. She is 26 and dealing with a recent diagnosis. I attend her meetings with oncologists and have done a tremendous amount of research. Even still, I have not run across many of these websites, so I must sincerely say Thank You!
    You and your beautiful family are added to my prayer list now. I love your outlook and will pass your website information on to my sister. I am sure your words will be inspiring!
    With gratitude,
    Kalen

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