cancer fighting notes from rebecca gronotte

February 18, 2014 by  
Filed under Healthy Living

A Good Note by Mark’s sister, Rebecca Gronotte!  We thank God for our dear sister and her God-given gifts in helping us fight this cancer for God’s glory!  We pray we can be a help to anyone on this road of fighting cancer! Great wisdom below!

The Journey to Find Answers in the Fight Against Cancer

I am Mark’s sister and I want to share more with others about the things I have learned since my brother’s brain tumor diagnosis in late December of 2012.  This  year has been a roller coaster to say the least.  Every doctor you see or treatment you read about on the internet can seem viable when you are desperate to save a life.  The process can be daunting to say the least.  It can be time consuming but if you can gain months of quality time with your family, its worth it.  Some may not agree with my advice  and that’s ok because I am still on this journey, learning as I go.  My purpose for writing the things I have learned on this journey are meant to help anyone who may go through a similar fight.

Researching treatments– When Mark was first diagnosed, I became obsessed with helping him find a way to beat this cancer.  From the first moments in the hospital hearing those words “you have a brain tumor” up until last week hearing our doctor say “you have fought so hard until now and I will help you keep fighting”, you realize that doctors don’t always have the answers but they are essential in this fight.  I learned quickly that what doctors tell you and what you read on the internet or at the library don’t always make the solution clearer.  Things are easily muddied with thousands of different treatments available (medicinal and homeopathic) so weeding through the information is very overwhelming.  It becomes a full time job.  However, it is a job I have gladly taken on because I believe that fighting cancer truly is a “fight”.  You have to live it day in and day out and be willing to ask every possible question and seek out every viable treatment.  Having a medical background, I knew that a basic internet search wasn’t sufficient and could very easily overwhelm as well.  I began to search research articles in scientific and medical journals which are available online often (at the very least abstracts/summaries are available and you can subscribe online or go to libraries for full text articles). I read a lot and I read often and every time I searched I would learn about another new intervention option so I just began saving the websites to my computer as bookmarks and started a notebook of any plausible treatment intervention proven effective in clinical trials.  I would come to each doctors visit with a list of questions about each option and take notes.  Now some doctors are very willing to take time to answer questions and fortunately all of our doctors have.  We have seen many doctors so you know that if your doctor won’t take the time to answer your questions, there are plenty out there who will.

Finding a doctor– The doctor we saw at the emergency room when Mark was first diagnosed was very matter-of-fact and indicated with certainty that surgery would be his best option for survival with a prognosis of 6-18 mo. the clock was ticking so I encouraged my brother to seek a second opinion.  In my mind, I think nothing is lost by seeking the opinion of another doctor, especially in the fight against terminal cancer.  We went to another neurosurgeon who decided a biopsy was a critical first step to determine the exact cell type of the tumor to be certain of its aggressiveness.  Once that was performed, he told us he did not feel that surgery was safe.  He said Mark had a high chance of losing his ability to talk and communicate.  This neurosurgeon and the neurooncologist convinced us that chemo and radiation was Mark’s only option, so the treatment began.  I was reading more and more about people with GBM (glioblastoma) and realizing that I could find no stories or research showing people who had survived longer than the 6-18 months by doing chemo and radiation alone so I began researching renowned neurosurgeons and brain tumor hospitals across the country.  I attained Mark’s medical records and sent them to several neurosurgeon’s and God led us to a surgeon in California at UCSF who agreed that Mark needed surgery and sooner rather than later so surgery was scheduled less than a month later.  The task of finding a doctor you can trust is a daunting task.  It requires long hours of research, persistence in asking many questions and diligence to attain the medical records needed to send to the doctors you are requesting.

Supplements– There is some disagreement about the value of supplements in the treatment of cancer.  Through my reading of research articles, books by cancer survivors and holistic medicine literature, I found that supplements do have validity in the treatment of cancer.  However, the use of supplements is supported and the reason most doctors do not advocate their use is because scientifically based clinical trials are funded by major pharmaceutical companies which manufacture drugs.  Supplements on the other hand are natural products that cannot be trademarked.  Therefore, research of supplements alone are not researched often in the treatment of cancer as drugs are nearly always implemented in a treatment plan directed by a oncologist and it would be difficult to ascertain whether the outcome was due to the drugs or the supplements.  I must mention that cancer is a complex disease and supplements alone would not be expected to cure cancer.  However, a multifaceted approach to promote an optimal environment in which the body’s immune system is boosted with foods, supplements, exercise and avoiding harmful substances along with standard cancer treatments truly seems to be the approach that long term survivors have adopted.  *Please talk with a pharmacist or you oncologist about the supplements you may take because they may interfere with chemo and other drugs.

Diet– I was completely overwhelmed by the number of books regarding different diet concepts to prevent and treat cancer.  Like supplements, diet is not typically the only way people treat their cancer so it is difficult to determine if diet helped the person beat cancer when they were likely taking drugs like chemotherapy.  The Gerson Therapy, the China Study and Anticancer are all books that provide support to a particular rigid diet plan.  I also read about the alkaline diet, the paleo diet and even a diet which included daily consumption of cottage cheese and flax oil.   Realizing that my brother would have a very difficult time preparing a lot of food as they have 3 children under the age of 4 at home and he is often very fatigued, I hoped to help him and my sister in law find ways to eat well and be consistent with a diet.  The resounding theme in all of the books centered around avoidance of processed foods (sugar, flour, etc) and consuming massive quantities of vegetables, legumes, fruits, nuts and seeds and little consumption of meat and dairy.  I emailed cancer survivors and read online in chatrooms about diets that people had followed and believed were successful in helping them feel better or cure their cancer.  The analysis of the efficacy of diet in the treatment of cancer is similar to supplements mentioned above.  Medical clinical trials provide the research of cancer treatments funded by pharmaceutical companies so medication is a part of the study and diet cannot be isolated as a treatment.  The diet component may always be a mystery as to how much it plays a role in killing cancer cells but my brother, sister in law and myself all agreed that cutting out processed foods, sugar, and hormone filled meat is a smart choice in this fight.

Support groups– Support is essential during the fight against cancer, not only for the person fighting it and for their family and friends.  YASG is an online support network for young adults surviving glioblastoma.  The Brain Tumor Association is a group that guides people to new and upcoming research, changes in the approval process from the government, etc.  The internet can guide one very easily to online chatrooms with people suffering from the same type of cancer  Read what people write or ask questions and people can respond who are dealing with the same topics.

Asking questions– ASK QUESTIONS!!!  This is the single most important thing in this process.  If we hadn’t asked questions Mark would not be here with us today.  I am by no means saying that you should doubt everything your doctor says but please educate yourself about the options available and attempts to pursue the best treatment options.  Doctors will not always guide you down the right path, not because they want to misguide you, but because they may not know the answers or they may be limited by the restrictions set by their employers.  It is important to understand the different options available and if you are unable to understand it yourself, you NEED to find a doctor who will.  We saw three different oncologists before we found one out of town.  And even recently we returned to an oncologist we had gone to months ago.  Over the course of time, your needs may change and any doctor should be willing to see a patient if that doctor truly wants to help this person (and that’s a doctor you want).  There are doctors out there who do care about your outcome and are willing to listen to your concerns and guide you in the best way possible.

Praying– This last topic is the most important.  Without prayers from others along with my own, I would not have been given the strength to persevere.  This isn’t to say I didn’t have days where I had to step away and take a breather because the topic can consume your life.  God kept me on track and when I would pray in desperation for guidance, it would always be revealed but not always in the timeframe I had hoped or even in the way I had expected.  Always remember you don’t have to bear the burden of your struggles.  God is there to help you in all ways.  God is in control and no matter what the outcome, it is ultimately for his glory.  The search for answers against cancer is an exhausting process but I have found hope along the way.  God has given me the ability to comprehend the medical terms explained in research articles and an assertive personality to press the doctors for answers.  This doesn’t mean that you have to possess these qualities to push ahead in your cancer fight.  It just takes persistence and faith.  If this can help one person, it will all be worth this blog.  My email is coralou502@yahoo.com  Please feel free to contact me with any questions. You will often times feel like you are alone in your battle but know that God is with you.

For I consider that the sufferings of the present time are not worth comparing with the glory that is to be revealed to us. 
Romans 7:21

Peace I leave with you: my peace I give to you.  Not as the world gives do I give to you.  Let not your hearts be troubled, nor let them be afraid.  –John 14:27

Rebecca Gronotte

IMG_6111

(brother & sister)

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