Showing posts with label medullary thyroid cancer. Show all posts
Showing posts with label medullary thyroid cancer. Show all posts

Thursday, January 23, 2014

               Becky MacK Goes to Washington

        Every year, in the United States, more than one million people are diagnosed with cancer and every year, more than 500,000 people die of cancer.  That is one big ball of stunning, unbelievable and scary to say the very least.  Those facts shouldn’t just scare you, though; they should catapult you into action.  When I was diagnosed with Medullary thyroid cancer and learned that there was no cure for my disease, suddenly whether or not clinical trials would be funded was important to me.  Suddenly, my priorities consisted of things like making sure that treatments and healthcare would be available when I needed them.  The National Institute of Health, comprehensive cancer centers and new drug developments became my central focus. 
That is why I involved myself with the American Cancer Society Cancer Action Network (ACS CAN).

 ACS CAN works with lawmakers to ensure that cancer is a national priority.  The organization works every single day advocating for public policies in the United States that are helping to put an end to cancer and cancer disparities.    More importantly to me, the organization gives me a loud, powerful and effective voice.  ACS CAN gives me knowledge in the land of cancer legislation keeps me up to date on the latest laws that affect cancer patients across the United States.  ACS CAN gives me options when my cancer tries to take them away.

  On Tuesday, September 10th, 2013, I joined ACS CAN’s staff and volunteers in Washington, D.C.  Together, we covered our capital building in a sea of blue ACS CAN shirts and advocated, educated and told our stories.    A total of 450 volunteers, including 256 cancer survivors attended 463 meetings with lawmakers, demanding that cancer be seen as a national priority.  I was fortunate enough to be a part of this important lobby day and very loudly and proudly represented Florida’s 19th Congressional district.  Together, we asked for lawmakers to consider three things:

First, we asked lawmakers to replace funding for cancer research that was taken away when the sequestration occurred.  Specifically, we asked that funding for the National Institute of Health and the National Cancer Institute to be restored and for continued funding for both cancer prevention and early detection at the Center for Disease Control.  I am living with a type of cancer that does not have a complete, systemic cure and this funding is essential for people like me because we depend heavily on cancer research and clinical trials.  Less funding means less research, less drug development and less hope for my cure.  Less funding means limited access to clinical trials.  Less funding means less lives are saved.  I will not accept that.  It’s time for less cancer and more funding, research and options. 

Second, we asked lawmakers to support legislation that encourages palliative care or quality of life, something that has been proven to decrease healthcare costs and improve the quality and length of life in cancer patients.   When I met with members of Congress, I explained to them that cancer comes with physical pain, nausea, anxiety and emotional distress.  Palliative care involves addressing the needs of the whole patient, not just the disease and, while palliative care does involve things like hospice and end of life care, it doesn’t begin there.  Medical professionals make use of palliative care at the beginning of a patient’s diagnosis and continue with it during treatment.  Every cancer patient has the right to be free of pain and nausea and to have his/her entire self treated.

 I will never forget laying in an MRI scan for over an hour.  I was required to lie completely still the entire time, but all I did was worry and cry.  I knew that the radiologist was looking for tumors and I panicked at the thought.  I couldn’t stay still and as I sobbed, my entire body shook.  Because I was moving so much, we had to repeat the procedure the following week.  This time, the nurse offered to give me something to calm down and rest before the procedure began.  Repeating the procedure unnecessarily cost both me and the hospital more money.  Had someone addressed my emotional needs the first time, it not only would have saved money, it would have helped my anxiety and saved time.  That is palliative care.  Yes, we need to treat the cancer, but we also need to consider every other aspect of a cancer patient’s experience. 

Finally, we requested that Congress increase the federal cigarette tax by 94 cents.  An increase in the federal cigarette tax has been proven to deter youth from smoking and decrease healthcare costs.  I recently learned that for every pack of cigarettes a smoker purchases, it adds $10.47 to the United States economy.  Nothing, and I mean absolutely nothing, good comes from smoking a cigarette or using any type of tobacco product.  

  It isn't just research that is going to help find cures for people like me.  It is also the public policies that allow for the implementation and funding of that research.  Know what’s happening in your community.  Demand that your lawmakers at the local, state and federal levels are paying attention to their constituents, people that are affected by this disease every single day.  Let’s hold them accountable.  I know I will.

Monday, January 28, 2013

Don't Tell Me it's Good

Hypothyroidism, biopsies, scanxiety, hair falling out, tumors, hypocalcemia, medical bills, incurable.  It's cancer.  Don't tell me it's good.




Thursday, August 16, 2012

An Open Letter to Katherine Schwartz

My doctors rock.  Not just because they're experts in my disease and not just because they're some of the smartest people I know who work at one of the very best facilities in the entire world.  They rock because they care.  They're human and they show it.  Recently, my Oncologist's Physician's Assistant, Katherine Schwartz, was nominated for a prestigious award and I had the privilege of writing a letter of recommendation for her.  I was floored and thrilled beyond anything that I was asked and even more excited to let her know how much she meant to me.

I want to share this letter because it's so important to me that the world knows just how much my doctors affect my life.  At times, they give me the kind of news that no one wants to hear and no one wants to deliver.  They do this with kindness and professionalism and sometimes with tears in their eyes.  They hand me the worst of the worst in the most gentle way possible and I can't imagine how it makes them feel to have to have to do this. I love them because they're not just doctors; they're human.   I'll forever appreciate the work that they do.  I'm so fortunate to have the opportunity to be able to tell them on a regular basis and I'm even more fortunate to have been able to put my appreciation in writing  for the fabulous Katherine Schwartz.

Below is the letter that I wrote for Katherine.


Dear Selection Committee:

My name is Becky and I am living with a rare form of thyroid cancer that currently has no systemic cure.   I live in Florida, but I travel to MD Anderson Cancer Center in Houston, TX so I can be treated by an expert that specializes in my disease.  While I definitely don’t look forward to my follow-ups and wish they weren’t a part of my life, I don’t ever mind going to the doctor because I am fortunate enough to receive top of the line care with the most amazing doctors and professionals in the entire world.  One of those professionals is Katherine Schwartz in the department of surgical oncology.  She is an incredible human being.

I met Katherine immediately before my first biopsy and she was one of the first people that I spoke with after that same biopsy reassured me that, yes, I had cancer.  She was a breath of fresh air in the middle of the dreariness of cancerland.

 When I was diagnosed , I felt like my heart was going to beat right out of my chest and my  soul hurt so badly that I didn’t think I would ever breathe normally again. I was scared and feeling like no one in the world could possibly understand the madness that I was experiencing.  It was Katherine who pulled me through that.   Katherine explained things in detail and on my level and with a kindness that only an exceptional individual like her could display.  She personally read every single scan result to me over the phone.  She reviewed every last detail of each finding, test result, poke and prod.  And when I cried, she gave me a million reasons why everything was going to work out.  Katherine doesn’t only treat my medical condition; she treats the ache in my soul when I need it the most.  Katherine makes the tough stuff a little bit easier to swallow.  That to me is invaluable.

I often find myself explaining my situation to doctors over and over again and for the most part, I end up educating them about the ins and outs of my type of cancer.  This is draining and discouraging.   Katherine is better than that.   She is not only incredibly knowledgeable about my disease; she takes the time to get to know Becky the person, rather than just Becky the patient.  She never lets me leave the hospital until she knows I understand everything that has happened and everything that might happen. I leave a conversation with her feeling educated and like I have choices. 

I could write a letter for miles and miles telling you about the fabulous Katherine Schwartz.  I could tell you about my liver scans and how she delivered my news perfectly.  She wasn’t just a medical professional that day.  She was a compassionate human being that cared about my outcome.  I could tell you about the scar on my neck and how Katherine worked extra hard to make sure that I knew how to take good care of it and reassured me that this was just a small detail in the grand scheme of things.  I could tell you about the day I couldn’t stop crying because I thought cancer was going to ruin my life.  Katherine was there then, too and all it took was a conversation with her to help ease my worries.  I could tell you about all of these things and more, but words will never be enough to describe the special qualities Katherine possesses.

 I have to live with cancer and the unknown.  I can’t predict the future and I don’t know what cancer or life is going to throw in my direction.  Knowing that a medical professional like Katherine is by my side makes all of those things a little more tolerable.  Katherine’s job isn’t easy and she doesn’t always get to deliver good news, but I have never seen Katherine without a smile on her face and a way around the cancer obstacles that come in my direction.   I’ll always be appreciative of the care she provides for me because at the end of the day it’s not just medical knowledge that keeps me going, it’s the kindness and authenticity of people like Katherine.

Sincerely,

Rebecca MacKenzie
Cancer survivor and proud patient of Katherine Schwartz

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