Brandy Vargas - 'Survivor'

Today we are thrilled to be back with another amazing ‘Survivor’ sharing her ‘voice’ with the Voices of Survivors Foundation today. Brandy Vargas, an incredible Hodgkin’s Lymphoma Survivor steps in front of the camera and allows Founder/Executive Director: Lynn Lane to take her photo for our Portrait Project! Check out her story and keep looking for more because we are going to be shooting and sharing a lot in 2013! It’s all about ‘Survivorship’!

*Click on her photo to go directly to her ‘voice’

Brandy Vargas - 'Survivor'

Brandy Vargas
Age: 39
Diagnosis: January 2006, Nodular Sclerosis Hodgkin’s Lymphoma
2A. Confirmed remission August 2006. Relapse symptoms April 2007, confirmed relapse July 2007

Treatment: ABVD Chemo x 6, Rads to chest/neck August 2006. August 2007 – ICE+Velcade x 3 (clinical trial), BEAM + Auto-SCT (MDA) October 2007. Complete Remission since September 2007.

Tell us something about yourself, something you really enjoy in life.
After my stem cell transplant I became a runner. I never ran for fun/recreationally in my entire life. But running empowers me, my lungs feel alive and it reminds me that I am healthy. Since 2009, I’ve completed a handful of 10k races, 2 half marathons, and completed a full marathon in 2011.

What does being a ‘Survivor’ mean to you?
I struggled with this question the most because it means so many things. But for me, being a survivor means being a fighter. Being strong even at your weakest point. Fighting through every chemo treatment, fighting through every test and prod, and even fighting through survivorship. Creating your new normal isn’t easy. You want so badly to go back to the way things were, but you’re in a new place now and you can’t. And to be  honest, I wouldn’t want to go back there now. I love the person I have become simply by being a survivor. I am stronger, more appreciative and more grateful for being given this life to live. And I intend to live it to the fullest!

Alma Nelly - Survivor

As many of you know, we are constantly trying to find new ways to share ‘voices’ and to help put a face to this thing we call ‘Survivorship’. We have been wanting to unveil this new idea but wanted the first person to be one person whom has truly inspired us in a huge way for all that she has overcome and her ability to face any challenge head on in her own ‘Survivorship’ and person is Alma Nelly! She’s a long-time ‘Survivor’ of two cancers and when it comes to ‘Survivorship’ she truly gets it! We are going to be profiling various ‘Survivors’ through photography and getting their take on what being a ‘Survivor’ means to them and where they are in their own ‘Survivorship’. Alma is the first of many to come!

* click on her photo to go directly to her ‘voice’

Alma Nelly - Survivor

Alma Nelly
33 years old
Osteosarcoma & Germ Cell Ovarian Cancer

Treatment: 6 rounds of chemotherapy, surgery to remove ovarian masses, and amputation of the right lower leg.

I am 14 years post treatment and will celebrate my 15th “cancerversary” this October.

For fun I like to spend hours out on the running trails in and around Houston. When I’m not on my “cheetah” running, I spend my time out on the roads with Ruby, my road bike. To me, being a survivor means doing what most might think impossible for an amputee. It means getting out there and showing the world that having had lost a leg to cancer is not the end of the world. What could have been perceived as the end of my world was only the beginning of the happiest, most fulfilling life I have ever known. Being a survivor means giving it my all each and every day in hopes that I might inspire someone along the way.

*photograph by: Lynn Lane

Heidi Saum - 'Survivor'

Today we have a woman who will make you stand up and cheer as she opens up in the most honest way possible about her journey into ‘Survivorship’! Heidi Saum was diagnosed in 2001 with an inoperable brain tumor and she didn’t take it sitting down. She is a multi-time ‘Survivor’! She gets it! It’s all about ‘Survivorship’!

*Click on photo to go directly to her ‘voice’!

Heidi Saum - 'Survivor'

My story of survival begins on March 31, 2001. After suffering a seizure I was rushed to Arrowhead Regional Medical Center where I was given the diagnosis: inoperable brain tumor in my left frontal lobe. Scared beyond belief, soon after hearing those words I asked the male nurse if I was going to die. When he replied with the words, “I don’t know”, my heart sank and thus began an 11 year fight. I immediately thought and was told later by doctors that I didn’t have long to live. I was 20 years old and dying an early death.

Depression struck, but the funny thing is that for the first time in my short life I really wanted to live. I had had a long struggle with severe suicidal depression as an adolescent and young adult, but I was not going to let cancer kill me. I had overcome so much and I was determined from the start that I would overcome this too. I knew I had to be stronger than the cancer.

After being diagnosed my symptoms began to get progressively worse and I was spiraling out of control. The frontal lobe is responsible for a number of higher mental functions including the ability to recognize future consequences resulting from current actions, to choose between good and bad actions (or better and best), override and suppress unacceptable social responses, and determine similarities and differences between things or events among other things. I was experiencing grand mal seizures as well as focal seizures regularly and severe headaches as a result of my brain tumor. Fortunately, today and for the past 5 years I have had a team of doctors who understand how the brain functions and I am on all of the medication I need to be on to control these specific symptoms; thus, I am very high functioning for a person with a frontal lobe tumor. However, without the medication I would be susceptible to a range of personality and behavior deficits as well as frequent seizures.

As a result of the worsening symptoms, I was scheduled for surgery six months after my diagnosis. Scheduled for October 18, 2001, the surgery lasted eight hours and was only partially successful. Apparently my tumor has what they call fingers, which are attached to healthy brain tissue and trying to remove them with surgery could be more detrimental than the symptoms they cause. Immediately after the surgery, I woke up (still in the operating room) and thanked the surgeons! I sat up on the gurney and waved high to my friends and family as I was rolled passed the waiting room windows on my way to recovery and the ICU. Just twelve hours after surgery I was walking around the hospital and two days later I was released.

Following my surgery, I received daily radiation therapy for a period of 30 days. Unfortunately, the treatment was not successful. The tumor did not shrink. I did, however, become very fatigued and lose my hair as a result of the treatment.

I can recall being very angry as a result of having endured two unsuccessful treatments. In fact, angry is a nice way of saying it. In actuality I was pissed and believed at this point I was doomed. Another obstacle I faced at this time was the fact that I was not fortunate enough to have health insurance. I believed then as I do today that had I had health insurance I would have received a higher level of care as after the surgery and radiation I was left with no hope, no more options, and hundreds of thousands of dollars in debt. I was not given chemotherapy as an option and even worse, I was not scheduled for periodical brain scans so for the next five years I lived in fear, trying every homeopathic treatment I could find.

In January of 2006, however, I got health insurance through my partner at the time and was scheduled for an MRI and a visit to a neurologist. My MRI showed growth; my tumor had crossed over into the right hemisphere and began to invade more healthy tissue. My symptoms had become unmanageable at this point as well. The neurologist suggested that I ought to see a neuro-oncologist in Los Angeles and begin chemotherapy immediately so this is what I did.

Upon visiting the neuro-oncologist I was told I would begin chemotherapy. I was to take an oral form a chemotherapy called Temodar for a period of one year. The schedule would be 5 days on and 23 days off. I was working as a food server at the time, but after my first chemo I realized I would not be able to continue working. The side effects were almost unbearable. They included among others, constant vomiting and dry heaving, and severe physical pain and fatigue. I went on permanent disability (which I am still on today, although I hope and believe that someday I will be well enough to work a steady job again). After my first year of chemo, the tumor was still as present as it had been before I began treatment so I began a second year. However, during this second year the side effects began to proliferate and I became house-ridden and very very sick and fragile. I was hospitalized at least once a week and sometimes for weeks at a time. I lost ninety pounds and was literally dying; not as a result of my cancer, but as a result of the side effects of chemo. I made the choice to stop chemo after one night of unbearable pain and a visit to the emergency room. I will never forget that night. I was screaming in pain. Even the morphine they were giving me once I arrived at the hospital was not helping.

Since I made that huge choice I have been in better physical and mental health than ever. Although I still have stage 3 brain cancer. I am happier and healthier than I could have ever imagined. I AM A SURVIVOR. I have survived childhood sexual, physical, and mental abuse, rape, suicidal depression as a teenager and young adult, and cancer. I am grateful for each of these things, especially the cancer, because they have made me who I am today. I see the world in a different light than the average person. Because I am alive and have been so close to death I am grateful for every experience, big and small. I can’t emphasize enough how happy I am just to be alive after so much struggle and not just to be alive, but to be thriving. I recently experienced the best day of my life thus far. I graduated with my Master’s degree in Sociology. (After being diagnosed in 2001 I continued my education. The only point at which I was not enrolled in school was during the two years I was on chemotherapy).

To me, being a survivor means many things. Most importantly, however, it means that I am empowered. Most of my life, my power has been taken away from me and today I have that power back and I am in charge of my life. To me, that is priceless.

Rick Linstead - Survivor

Today’s ‘voice’ is one that is filled with power, honesty and truly represents what ‘Survivorship’ is all about! As we move into this weekend, this is a ‘voice’ that will resonate for a very long time for all of us. Rick Linstead, a stage III lung cancer Survivor, opens up in a huge way with the “Voices of Survivors Foundation” today in the ‘Written Word’! He truly gets it! It’s all about ‘Survivorship’!

* Click on Rick’s photo to go directly to his ‘voice’

Rick Linstead - Survivor

My name is Rick, I am 54 years old and I am a lung cancer survivor.  Stage III A small cell carcinoma.  My journey began in June 2011 with a calcium stone in my salivary gland, 2 dentists, ENT and radiologist found nothing, when my tongue was swollen to where I could not swallow or breath I was sent to the ER.  The surgeon found the stone and drained my neck.  Infection from Strep B spread to my shoulder, again another ER visit where a chest X-ray was done.  A small black spot was found in my upper left lobe of my lung.  After surgery to remove the infection and 6 weeks of IV therapy, I met my pulmonologist who told me I more than likely had cancer.  He did a bronchoscopy and said I did not have cancer.  He then ordered a breathing test and a PET scan.  The PET scan indicated I had cancer and I was told Stage 1, remove the one centimeter mass and we would be done.

I met with the surgeon who would remove the lung and he described the procedure and the possibility of removal of the lobe that he would biopsy during surgery and make that decision.  When I woke up in the  ICU I was informed my large upper left lobe had been removed.  I met a nurse navigator in my room, she informed me I had Stage III A lung cancer and 7 of 10 lymph nodes had cancer.  This was a difficult story to hear and I was distraught at best from hearing you have Stage III A  cancer, not Stage I.  I asked her to leave the room immediately.  I did not accept the news.  After much thought, I called the next day and asked her to come back and we talked at length.

I met with my oncologist who described what his treatment plan was going to be, I asked about a second opinion and the hospital did have a team of doctors, surgeons and radiologists who did meet with me for a few hours and discussed their findings and course of action which differed from my oncologist.  After a discussion we were going to follow the panel’s recommendation, he told me it was much harder to go through so we went with his original plan.  4 rounds of chemo, Cisplatin and Alimta every 4 weeks.  I did not suffer many of the side effects that I had read about; the nausea from watching a food commercial surprised me as did the smells of food and the lack of taste.  The first 3 treatments were easy, the 4th one did kick me to the curb.

I posted my journey on Facebook to share with others.  When I initially posted I mentioned Stage 1, did not want to use the cancer word.  I was surprised at the quick response of many friends who were in fact survivors of many forms of cancer, none were lung cancer.  I learned that cancer is much larger than I could imagine and was blessed with a support network of friends and total strangers and the prayer support that I received.  I asked a friend Daphne to attend the second opinion and listen as I was too busy asking questions, she went to all my treatments and drove me to my appointments, and she is a true blessing to my life!  I chose to openly share my story, I am not a victim, and I am a survivor who with a positive attitude decided I want to see my grandsons in grade school graduate from high school and college.  I made the decision to live my life fully and have been told I compress 5 days into 1 and I do, I must accomplish something every day.

Being divorced, I found dating to be a very awkward process; I would mention lung cancer right up front, no secrets, put it in the open.  Some responses were shocking, great smile and personality and you are dieing!  I tell people that lung cancer is not a communicable disease and I am doing fine.  Being an avid photographer of nature, I love to climb and photograph waterfalls on the Blue Ridge Parkway and Pisgah National Forest.  My doctors had told me I would not be able to do that any longer.  2 weekend trips of 4 waterfalls and 6 mile hikes at 4700ft later I did some happy dances and I did hug some trees along the way, but I DID IT!  My oncologist was concerned with how fast I ascended and to what altitude.  My second CT scan shows cysts in my lungs and some are hardening, not sure if that was from the exertion and altitude.  Oncologist said you are cancer free BUT and he could not interpret the 2nd CT report and my endocrinologist read it and had no clue what the Radiologist was stating.  The oncologist and pulmonologist conferred and I was told to see the oncologist in 6 weeks.  Not having an answer is very frustrating.  I always have a smile on my face, I often cry inside, but I have a second chance at life, I am living it and pushing harder than I should.

I have had many calls from my insurance company cancer nurses and a social worker who have tried to help with resources.  For being the most common form of cancer, there does not seem to be much available to inform you about the disease.   My oncologists report said I have 39 months to live, I have challenged him every time we speak.  He said I could live to 90 with my attitude and desire to live.  The local cancer resource center had no materials on lung cancer and when I asked my doctor for patients he might have treated that I could speak with resulted in silence.  The expenses are overwhelming, and missing work for 6 months were hard.  I have been blessed with a network of friends that were concerned and were waiting for my CT results which I share.  I don’t know what the future holds, but I do live for today, tomorrow will get here soon enough, the past is a lesson.  After 2 scans I am cancer free, I have made positive changes in my life and attitude, I want to inspire others to do what you want to do in life.  You have a second chance, take advantage of it!

Cancer has taught me to have Faith in God, Trust, Compassion and that you must become flexible and adaptable in life.  I have been blessed with support, friends known and unknown and I pay it forward and help others and am open and share freely.  I am neither embarrassed nor ashamed for having cancer, it has made me stronger, and I am a SURVIVOR!  Be Positive in your Attitude, it is Power!

Nancy Adkins - 'Survivor'

Today’s ‘voice’ comes to us by way of a stage 4 non-Hodgkins lymphoma and bone marrow transplant ‘Survivor’! Nancy Adkins opens up honestly with the ‘Voices of Survivors Foundation’ in the Written Word and it is a truly powerful story of HOPE and courage. She’s an amazing woman with a very powerful ‘voice’. If you are looking for inspiration today…this is definitely a ‘voice’ that will bring that to you tenfold!

*Click on her photo to go directly to her ‘voice’

Nancy Adkins - 'Survivor'

I wanted to share my story to give HOPE and a voice to Survivors! I had my first child in December 2005 and began having leg pain three weeks later. I was 26 years old and on maternity leave from my social work position. My pain gradually increased and I began going to the doctor and ended up going every week for over a month and was misdiagnosed with arthritis and inflammation. My symptoms progressed to back pain, unable to eat, night sweats, fatigue, weight loss, and much more but I was having blood work each week and getting normal results. A CT scan was order and they found a 4 cm mass on my liver, several on my spleen, and one small one on my pancreas…I was told it was probably a fatty tumor and needed biopsies. The biopsy was scheduled for three months. I started getting sicker faster and could not function within days and couldn’t even hold my baby. I finally started taking the pain meds as I was nursing and didn’t want to before. I was in EXTENSIVE pain and was getting no relief and became bedridden until I went to another facility to an emergency room when I was misdiagnosed again and told I have sciatica nerve pain, gallbladder disease and starting of pancreatitis. I was being prepped for gallbladder surgery when a standard chest x-ray revealed a 10 cm mass on chest wall. The tables turned and I was admitted and seen by an oncologist. I was told to hope for Hodgkins lymphoma. I was transferred to another cancer facility and had every test known to man it seemed..bone marrow biopsy, spinal tap, liver biopsy, scans, labs, etc. I was told two days later the day my baby turned three months old on March 21st 2006 that I had stage 4 Diffuse Large B Cell Non-Hodgkins Lymphoma. I was told a bone marrow transplant was in my future, first chemo and most likely radiation. I was informed the chemo could kill me before the cancer and that i would most likely be infertile after treatment. I immediately started chemotherapy 8 rounds of CHOP-R. After each chemo I was hospitalized in isolation for being neutropenic for about 5 days each visit. I got very very ill with chemo. Seventeen radiation treatments followed and still no remission. RICE chemo followed and then a work up for a stem cell transplant.

God blessed me with two perfect sibling matches. I had my transplant at the Mayo Clinic in Florida. I live in KY and was away from home for three months. All together I lost my hair three different times and developed GVHD, VOD, CMV, and had a code blue. I also developed steroid induced diabetes and had so many problems. My prognosis didn’t look well but I had faith and with prayer, my baby, my brother ( my donor) and a wonderful medical team I walked out of the hospital after almost six weeks and was back to the waiting game and continued in survival and fight mode. Follow up care followed back in KY where was I given wrong lab reports and almost died from toxicity from cyclosporine. I recovered and my journey of fighting continued. God blessed me with my son…the best medicine possible at just the right time, two perfect matches, and a FREE transplant at a top facility because my husbands employer (Wal-Mart) had a specific bone marrow transplant insurance, and an Outstanding brother who was my donor. By the Grace of God I am alive, cancer free, and raising my son. He is 6 years old now and graduating Kindergarten this week and I celebrated my 32nd birthday this year. I will be celebrating my 5th transplant anniversary/birthday May 30th 2012… A few weeks to go! Getting ready to take my fifth Relay For Life Survivor lap this year as well. I have been diagnosed with chemo induced neuropathy as well as fibromyalgia and premature menopause and have a great deal of fatigue, pain, amd weakness. I also have to take meds for nausea and my life is no where near where it was before cancer but is my new normal and i have learned to ask foe help when I need it  and take one day at a time. Despite long-term side affects..I would do it all again in a heartbeat…I was told transplant was my last chance for a cure. It was and is worth to be here alive, cancer free, and watching and enjoying my son grow and to experience his “first” and experience the world in a new light, through his eyes and though a survivor’s eyes. Believe me the view is MUCH different! I have a second chance and I  always say that each breath we take is a gift from God…treasure it and  There is always someone worse off than we are. Songs and scriptures help to get me on track if I let my mind wander in places I didn’t want it to go.There is always HOPE, each patient is different, ask questions and be your own advocate! A positive attitude and faith can take you far. NEVER EVER GIVE UP HOPE!