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Find the Cure – Research Makes It Possible!

Dr. Francis Collins (Director National Institute of Health)

The desperation seen on the faces of the patients and their loved ones is one that screams for action. The look says it all. Please tell me that you can save me. Please do something to make my loved one get better. Please take away the pain.

These are the reasons why advocates headed to the Capitol to meet with their state and local leaders to ask for funding of the National Institute of Health (NIH). The advocates included patients, caregivers, research scientists and doctors sharing their stories and expressing the need for a robust and sustained funding for the NIH.

The request is for 2.5 billion dollars.

The Rally for Medical Research meeting included a review of the progress made in cancer. There has been significant strides from 1971 where the recorded number of survivors was 3 million. Due to the research over the years, there are now 16.9 million survivors recorded in 2019. The FDA approved 17 new anti-cancer therapeutics that are effectively treating patients who have been diagnosed with various kinds of cancer. In addition, 10 previously approved anti-cancer therapeutics to treat new kinds of cancer all happened between August 1, 2018 and July 31, 2019.

While there are significant progresses in treating cancer patients, the disparities are still outstanding. Non Hispanic black men with prostate cancer has a mortality rate that has more than doubled that of any other racial or ethnic group. Taking a look within the rural areas in comparison to urban areas, women with ductal carcinoma in situ are 29% less likely to receive radiotherapy after breast conserving surgery.

While listening to the stories that were shared during the meetings on the Hill, a pediatric doctor spoke of a child who came from Oklahoma to New York for a clinical trial treatment that was only possible due to the funding from the NIH. The child is responding well to the treatment which one can only imagine brings hope to the family. Needless to say, the clinical trial treatment will most likely be added to the new methods of treatment – saving or extending other lives.

Another story was shared by a couple who came in from Canada to give thanks and encourage our leaders to fund the NIH as they too have benefited from the prehab and rehab programs. Christine Cosby was diagnosed with breast cancer and had quite a difficult time with the side effects of her treatment. Christine’s husband also shared how beneficial the services were and the need for others to have access to these kinds of discoveries. He was quite emotional as he expressed his gratitude. The couple remains optimistic as they have both benefited emotionally, mentally and physically from the program.

The stories are many and they are all compelling. The call is simply to ask for funding to help the researchers to find the cure. Here’s your chance to call your local and state representative to fund the NIH. The research funding may be the one that saves your loved one or even your own life. Find Your Representative

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Cancer, Depression and Faith

Is it possible to have faith and still be depressed?

Photo by Pixabay on Pexels.com

Savannah is struggling with her recent diagnosis, her doubts and the struggle with her faith. She was a church girl who attended church all of her life and has always had her faith in tact. A few weeks ago, Savannah was diagnosed with breast cancer and recently began chemotherapy. She was optimistic as she tapped into her faith believing that she was going through a phase which was just a setback in her health. Interestingly, Savannah was engaged to her longtime boyfriend Karl and was looking forward to planning their wedding. She had her bridal magazines, her pen and her daily planner, along with her iPad to work on during her chemotherapy treatments. She was all prayed up and was encouraged by the survivor stories that she had heard.

Photo by Ken Ozuna on Pexels.com

The one thing that she was not prepared for was how awful and weak she would feel after treatment. She heard from other survivors who said that they had treatment during work hours (lunch) and continued to work through their treatment. She knew that she would not be able to work, at least not now. She worried that she would not be able to make it through her treatments. Slowly, the doubts began to build up.

Savannah questioned her faith. She prayed, she had prayer warriors praying for her. She believed in the power of prayer but now she with every treatment, she felt weaker and weaker. Her hair began to fall out in clumps, the texture of her skin changed and she no longer answered her phone or respond to the text messages from her family, friends and coworkers. Although she would check in on her social media accounts, she no longer posted or engaged with others. She broke down and cried while looking at the photos of others having a great time. She became emotionally overwhelmed when she saw some photos of her friend Char’s husband celebrating her birthday. It was an extravagant affair, he surprised her and all of their family and friends were there. Savannah was invited and had planned to attend. She RSVP’d well in advance of her cancer diagnosis. Now, here she was watching life go on without her. She wondered whether she would see another birthday. Would she marry her best friend? Will they be able to have a family?

Photo by Skitterphoto on Pexels.com

Karl was there for her reassuring Julia that they will get married. He wanted her to be his wife as she was the love of his life. He believed that she would be healed. He prayed and trusted in his prayers. He noticed that Savannah was not like herself. She was outgoing, ready to hang out with their friends and now she was often in bed, the curtains drawn, watching movies and checking on her friends by looking at their social media posts. She rarely responded to the friendly check in from her friends on her page even though she read them.

Determined to make Savannah feel better, Karl encouraged her to seek counseling. She reluctantly agreed. She began to question whether going to counseling meant that she was not trusting or believing in God. She wondered if she would be judged for her lack of faith. Savannah knew that she was not feeling like herself but wondered if she got back into her social circles, church and getting out more often – she would begin to feel better. However, Karl convinced her that counseling would be great for her. In fact, he offered to go with her and sit in with her whenever she needed him.

Although the counseling helped, the feeling of failing to have faith lingered. Savannah has completed her treatment and is waiting for the results. She hopes that it will be all clear. She is looking forward to moving forward with her life and marrying her best friend – Karl.

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One Bite At A Time

Photo by Adrienn on Pexels.com

One day I noticed that I no longer had an appetite. Shortly after chemo treatments, I noticed that my food did not taste the same. I was no longer hungry. I felt nauseous by the scent of things that never bothered me before. I did not want to eat anymore.

It is difficult to explain. I know it is frustrating to my family and friends who just think that all I have to do is eat something or just take a bite. It is as though they think that I am giving up. What they cannot understand is that I wish I could eat something but I just can’t. I have tried, the food just would not stay down – the vomiting begins.

The doctor gave me steroids which caused me to gain 32 pounds. On the bright side, I was eating once again – taking one bite at a time. My appetite increased and everyone was happy. However, if the depression of the cancer diagnosis was not enough – the weight gain added to my distress.

Now that I have completed my treatment, my appetite has returned. I am working out and monitoring my diet. I am not back into my pre-cancer clothes yet, but I am almost there. I am back to eating my favorite foods – just taking it lightly – one bite at a time.

Joy M. (Uterine Cancer)

Eating Well During Cancer
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Truth Be Told

The Truth Be Told series will highlight the stories of those who are sharing their challenges with cancer. It is a candid look into each person’s journey – from the cancer patient, survivor, caregiver, partner or friend – it will give an insight that many are reluctant to share.

Her Truth!

I am not feeling pretty. I look in the mirror and I see a stranger. I am looking at a woman who once smiled every time she saw her reflection. Today I cried. I looked at myself and I felt pity on the shell of a woman who once was happy, living life on her terms, catching up with friends, traveling and dining, dancing and doing just about anything she wanted to but now she’s a stranger. Living in a world of fear. 

Looking in the mirror I see a shell. I want to look beautiful again. I want to smile again. I am looking for ways to give me some sort of semblance to get a glimpse of who I used to be. Will it be a new lipstick? A wig? A new outfit? 

I need to find something to get me through this state of unfamiliarity – a strange land. I am looking for a makeover. I need to feel like me again.

Sunsyré D

Breast Cancer 

Can you relate? Cancer can take a toll on one’s physical appearance which adds to the stress of the journey for both women and men. It is important to remember – while each journey is unique, we all share a common theme – cancer changes our lives forever ~DawnKA

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Conversations and Coffee

“Sometimes all we need to do is just talk about it; there’s comfort in knowing that you are not alone.”

This Fall we will be kicking off a series of Conversations and Coffee. These sessions will be an hour of sitting with cancer patients, cancer survivors, caregivers and other supporters. We will explore the concerns and catch up on the latest medical breakthroughs, clinical trials, resources and more.

We have heard from many members of the cancer community who have expressed their interest in joining us on our sessions. It is so important to find a supportive environment. We can take a moment to listen, share and sip together. It is an hour of release.

We’re looking forward to our sessions, we are inviting everyone to come and sip with us and you can even bring your own coffee mug.

For more information on our next session, contact Conversations and Coffee

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Five Wishes

If you had one wish, what would it be? Many people are prepared to ask for at least three wishes with hopes to either gain wealth, love and happiness. However, Five Wishes are a part of a patients wishes for their care and how they want things to work out during the final stages of life. It is recognized and honored by the hospital staff.

It was during the end of summer, when I held the booklet in my hand and reviewed it with my brother who was in the hospital after being diagnosed with pancreatic cancer (Stage 4). The diagnosis was a shock to all of us and although I understood the severity of his condition, my brother was standing strong in his faith and was determined to become as he puts it – a testimony to the miracles of God. Needless to say, the task of having any conversation that involves death was difficult.

Here’s the essential part, we were raised in a house that centered around Christian values based on love and compassion complete with having a strong faith in God – knowing that all things are possible, miracles can happen, if you believe. Therefore, it is only natural that he invokes his faith as he listened earnestly to spiritual and inspirational sermons.

There I was sitting in the chair next to his bed, reviewing the pages of Five Wishes. I finally mustered up the courage to discuss the importance of being prepared in the event that he has a set back and could not communicate at any point, and although I was his Health Proxy, I needed to ask him a few questions. I wanted to be sure that I was making the best decisions with a good understanding of his own desires.

We were able to complete the questions and my brother was able to continue on in his faith for healing. I was relieved to know that my brother’s wishes were clearly defined and served as a guide for the staff and everyone else. If you or a family member is interested in completing the Five Wishes please ask a member of your healthcare team.

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With Access to Affordable and Quality Healthcare for All

Speaker Nancy Pelosi addresses the importance of the Affordable Care Act

It seems as though there is often a threat to our efforts to maintain access to quality and affordable healthcare. Cancer patients and survivors are at risk for losing their coverage through the insurance companies who can then deny coverage due to pre-existing conditions, drop a patient or raise their rates due to their diagnosis.

Cancer patients are terrified over the costs of cancer. They are at risk for losing their job due to treatment scheduling and the side effects. There are couples who have lost their homes, cars and sometimes their marriage. There are single mothers who have lost both their jobs and their apartment. The jobs that provides their resources for daily living and also covering their health –

The Affordable Care Act changed the needs of the patient with access to quality healthcare and financial protection for millions. However, as the battle wages on in Washington, DC by the politicians who are determined to repeal and replace the Affordable Care Act – there are many of us who are not going to sit back and see how it goes.

Hill Day meeting with Senator Charles Schumer

The alternative previously presented was the American Health Care Act which would make a tremendous cut to Medicaid leaving over 30 million individuals without insurance. In addition, it will not protect those with pre-existing conditions. The budget that was recently proposed included:

  • cutting over $818 billion from Medicare over 10 years
  • putting a cap on Medicaid and taking away $1.5 trillion over projected spending (10 years)
  • cutting federal health spending by $659 billion (10 years)

There were a number of patient advocates, doctors, medical students, and other professionals who joined alongside the National Coalition for Cancer Survivorship to let our local and state political leaders know the importance of the Affordable Care Act. Advocacy is such an important part of our mission. It is a matter of life or death and we demand access to affordable and quality healthcare for all!

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What else is out there?

Once diagnosed with cancer, the questions can be lost in the mix of uncertainty. Some people are concerned with their life span, wondering how much longer before it all ends. Some are wondering how will they make it through the treatments? How will it affect the family? Job? Social life? Post cancer treatments and survival?

The next thing that most patients want to do is to begin their therapy/ treatment. Naturally, the doctor creates a plan that is considered to be best for the patient. The patient complies as they may feel that this is the way to go – leaving it to the experts. However, there are some patients who ask “What else is there for me to try?” If this treatment plan does not work, what else can I do?

You may want to consider a clinical trial. The National Cancer Institute has a Cancer Therapy Evaluation Program where the National Clinical Trials Network Lists the clinical trials that are actively in progress. You can find the list of specific cancers, hopefully, your cancer is listed there. You can also find NCI Supported Clinical Trials by typing in your cancer, age and zipcode to get the best match for you. In addition, you should discuss with your doctor or contact the National Cancer Institute to learn more on their designated centers and sites.

—> Find A Center <—

NCI Designated Centers

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Alcohol – Is it a yea or nay?

Sometimes when you go out to dinner with friends or with just with the girls, there’s that moment when you look at the drink schedule in every now and again you decide perhaps you will have a glass of wine or a fruity drink like a Bahama mama, sangria, beer and although you are not a heavy drinker – the question is, is it harmful?

The latest findings are based on a study that was conducted over a period of 16 years in 195 countries – no alcohol period. Researchers have declared – None. Nunca, Nada, Nyet, Non!!!

Well, after reading all of the different research studies from the experts in the field of research, who have told us that we could have a glass of wine. In fact, they insist that we have a glass of wine each day as it may be good for our heart – then again it may not be – because it may cause cancer – but then again, if it’s red it’s probably healthy for us. Needless to say, we fall into the confusion of not knowing whether it is or is not really good for us. Therefore, we decide that we will sip on this one drink and pray for the best.

The distinction that should be clear, is that if we drink heavily or binge – it may result in compromising your health and well-being. You may be placing yourself at risk for cancer (breast, colon and rectal, liver, esophagus, the larynx/voice box, pharynx/throat, mouth) pancreatitis and stroke. The truth is that if we have a family history of alcoholism, we should avoid drinking.

This is neither an anti-alcohol or endorsement of alcohol consumption. It is more of an exploration into studies and their findings. Research studies may be lost in translation and in that frustration, it may actually lose its credibility as one may determine that there are too many contradictions.

However, as always, whatever you do decide – do so in moderation. When you complete your health questionnaire, you may be able to select the appropriate response – on occasion.

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Let’s Talk Dirty…

A few days ago, while I was speaking at a conference, I told the attendees that it was time to talk dirty. Cancer disparities remains high, especially within the minority and underserved populations – we have no time to waste. My topic is urgent and I am on a mission to bring cancer awareness to as many people as possible. Therefore, I shared my own journey.

Although I was not 50 years old, I knew that I had to be cautious and diligent as my father had colon cancer. Colon cancer is cancer that is found in the large intestine which is in the lower section of the digestive system. When you hear the term colorectal cancer, it refers to the last few inches of the colon known as the rectal area. Colon cancer on it’s own is mainly found in the upper area of the large intestine. 

I was prompted to have a colonoscopy after moving my bowels and seeing some blood in the toilet. It was a shocking and scary moment. I had never seen anything like that in my entire bowel life. Needless to say, I had to make some calls. Thank God for cell phones, I took pictures and shared them with my Internist and of course my King (husband/best friend/partner in life). The concern here was that by the time one experiences symptoms of colon cancer, it may present a huge problem. 

In preparing for the procedure, I took my prescription of Golytely to the pharmacy. In addition, I purchased a 10 oz. bottle of Magnesium Citrate (Lemon Flavor) and a box of Dulcolax. The instructions to prepare for the procedure begins as early as seven days in advance. It is generally advised that one should stop taking any arthritic pain medications, Advil, Motrin and Coumadin, Plavix and other blood thinners – all of which would be discussed with your personal doctor to see if it applies to in your case when preparing for the colonoscopy. There are foods that you should avoid five days prior to the procedure – celery, corn, peas and tomatoes. The day before, you should not eat milk, ice cream, nuts, seeds or raw vegetables.

The Day Before

I enjoyed a light breakfast and a light lunch. I filled the powder mix of the Golytely bottle with water to the 4 liter mark and shook it like a martini mix. At 4:00PM, I took 4 Dulcolax tablets with water and then at 6:00PM it was time to drink up. This was the point of no return, you could only drink clear liquids and nothing at all after midnight except for the Golytely mix as directed. The rest of the evening was not for the faint at heart, it was a thorough cleansing of the digestive system. 


The Day is Here

Up early, raring and ready to get it done. I arrived ahead of time and before you know it, I was in and out. My King and I went out for lunch and then home. At times all was normal, we laughed and talked but my mind would wander off into the questions of the results. After a colonoscopy, it is advised that one should take it easy in resuming their meals. 

The Results

Off to the doctors two days later for my physical. I was anxious to hear the results of my colonoscopy. Needless to say, I was bracing myself – whatever the results, I will accept it and then I will move accordingly. Here it goes: “The good news is that you were a great read (referring to the colonoscopy), we were able to see everything clearly which is very important. At this statement, I felt myself shifting in the chair, crossing my legs and holding on firmly to the arms of the chair and for some reason, a smile was on my face. I knew there was more to come, seeing that the good news had already been shared. He continued: “We found a polyp, we took it out and sent it to the lab for testing. The results shows that it tested positive for cancer, it was very small and we caught it early.” As it would just happen, I remained calm, my smile still placed on my face as though I felt that all was well. I was alone hearing that I had tested positive for cancer. The smile was my way of soothing myself. My King, my children were all at work. After a thorough review of my results and my health regimen, the physical began. I could not wait to call my King. Should I wait until he gets home? I just couldn’t keep it to myself, I called. I shared the news as calmly and as positive as possible. After all, it was caught early. The King was just as calm and encouraging as expected. Shortly after our conversation, I received an email, it was my King expressing how the news of my results was like a punch. I knew that my children would not be able to handle the news very well but it was important for them to know – family health history is extremely important. This was a NEED to KNOW. My children cried, it’s just unnerving hearing the results. They understood and were relieved to know that it was caught early and now they too have to be on the alert for their own health. Next up calling my siblings.

Background

In many cases there are small polyps that are often benign/noncancerous. In some cases, the polyps develop into colon cancer. There may be few or no symptoms. Fortunately for me, the source of the bleeding was from an internal hemorrhoid. If I could give it a hug and a kiss I would, that hemorrhoid was responsible for the early catch of my cancer. On the other hand, I am still processing the fact that it was positively identified as cancer. Now when I speak on the importance of early detection, I speak from experience.

If you notice any of the following, you may need to call your doctor:
*When you notice a change in your bowel habits such as an incomplete bowel movement, constipation, diarrhea or a change in the consistency of your stool
*Rectal bleeding or blood in your stool
*Persistent abdominal discomfort, such as cramps, gas or pain
*Tired or weak
*Weight loss without trying