Battling cancer can be a stressful and scary experience. While the input of family, friends and physicians is important, stories and experiences shared by other cancer patients can provide comfort and hope. The following stories represent Moffitt patients of all cancer diagnoses, ages and ethnic background. Our hope is that their stories can help inspire patients and their families as they undergo treatment.
Fortunately, I don’t remember a lot of the specifics of my journey. This is not a memory loss side effect but completely by choice. I can’t tell you the exact date I found my lump, the day I received my diagnosis, the exact day I started chemo, the day my hair started falling out, the day my fingernails started curving downward, how often I threw up, how many times I went to the ER or how often I cried because to be quite honest, those things don’t matter to me. What matters is that I had breast cancer, I underwent surgery and chemo, it sucked and now I am cancer (and hair) free. For me, my cancer journey was sort of like the pregnancy and birth of my children in the aspects of time and memory. There was much time spent dealing with uncertainty and questioning of myself. I wondered if I would be okay, if my family would be okay and if I had the strength to make it out alive. The fear of the unknown tried to take over sometimes and there were days that I can only describe as a big ‘ole mess. But, for me personally, just like I forgot the pain from childbirth I AM going to forget all of those ugly, sad days. I have chosen to remember the good times and all the laughs I had along the way, and believe me there were many. How can you not laugh when one day you are a woman with looks you have grown to appreciate and the next you’re a woman who resembles a little bald man? I still find myself making faces or flexing my muscles like men do in the mirror just to get a giggle. My kids rub my head like a Buddha when I read them bedtime stories and this makes my heart melt. One of my highlights was getting to tell someone that my children brought home the most awful case of head lice and that’s why I had to shave my head. You should have seen my husbands face when I let that one fly. He didn’t know it was coming so he almost spit his drink all over the poor guy who questioned my reason for shaving my head. It was times like these when I felt I was showing cancer who was boss. Cancer was able to take many things from me but not my spirit, my sense of humor or my determination. I tried to always keep smiling because that was the drug that worked best for me. I knew in order to make it through I had to always look for the silver lining no matter how faded it was. I told myself that my lack of hair would make me more aerodynamic when I was running and that the double mastectomy would help my golf swing since the girls would be out of the way. Neither of those worked out as I hoped. I will keep trying.
Currently I live at Nemours Children’s Hospital with one of my twin 5 year olds who was diagnosed with AML a little over a month ago. She finished her last day of her first round the same day I did my last treatment at Moffitt. I can’t tell you exactly what that date was offhand because I still have my same attitude. The difference with my journey and with Bryton’s is hers has a more “Frozen” theme. Once we are done with things we just “let them go!” We wake up everyday and start fresh. We have encountered many obstacles but God doesn’t give us battles we can’t win.
I still live one day at a time and thank God everyday for showering me with his Grace. I love spending time with my family, playing golf, enjoying a good glass of wine with my girlfriends, cooking in my kitchen and living life to each particular days fullest. My journey with cancer will never be something I completely forget but my mantra is “I ain’t got time for that!!” I have a life to live and this earth to enjoy. Cancer is mean, ugly and rude. It’s not fair. It has taken many beautiful, great and special people way before their time. This is why I say stand up to cancer. Show it who’s boss. Make every minute count and be certain that it rue’s the day it ever decided to enter your body. Give it a run for its money and NEVER stop smiling.
When I was in high school, I always dreamt of being part of the team that ends human trafficking. So when a really cool church trip brought me face to face with the A21 Campaign, an organization out to end trafficking, I knew I belonged. I applied for an internship and after a few Skype interviews, I got it! I was to make the move from Clearwater, Fl to Costa Mesa, CA in April of the next year. I LOVE adventure, new places and new people so this was going to be the best time of my life! Unfortunately, the month before the big move my grandpa was diagnosed with lymphoma and I called off the move. My grandpa, a man who had been a father-figure to me my whole life, wasn't about to do cancer without me. He had an aisle to walk me down one day!! I went to treatments and appointments with him and really learned how hard the cancer life could be. But nothing seemed harder than the day we lost him. His chemo ended up making him more sick than the cancer and his body couldn't handle. He went home in early May. By the grace and strength of God, I gave the eulogy to honor this legacy-leaving man! He was my family's rock.
A little before his passing, I was struggling with some chest pain. I'm one to put things off- prioritizing wasn't always my strong suite:) But after 3 days of this ache, I called my primary who sent me to the ER. They scanned my chest and I'll never forget the doctor walking into our room and showing my parents and I the pictures of the massive tumor in my chest. I went through 2 biopsies that following week. Needless to say, the whole week was surreal. I was 20 years old when I was diagnosed with lymphoma. That wasn't supposed to happen- I'm young. I have plans. I have dreams. But all of those came to a halt when the cancer patient appointments were being made for ME.
I remember one day, it just all hit me. It was the first day I broke down. I walked out of my cancer patient appointment in a hurry to get to Staples to get my grandpa's funeral program printed for his funeral the next day. This was a really dark place to be. Thankfully, (not shoving down anyone's throat), I came to know who Jesus Christ was while I was in high school. I'm a girl who's in love with God and learning new things from the Bible everyday. My relationship with the Light of the world would far outweigh any cancer darkness that tried to come at me. Because of this, I can honestly say there wasn't a day that I feared. There were certainly days that were hard, but never a moment of fear. I knew my God had me from the start and that He would carry me through, peacefully and in His light.
I started treatments at Moffitt about a month after my diagnosis. I would go in for a week of chemo and have two weeks off. This was hard for me because I was so social! I've never understood how to just sit. I don't even have cable, ha ha. These weeks were frustrating. These weeks were painful. The chemo brought out mouth sores that kept me from eating my Chick Fil A. The steroids kept me mentally crazy. And the shot they gave me to put my eggs to sleep put me in menopause. I got hot flashes like an old lady...my mom and I were trading off... :P The worst of it all though, was the day I lost my hair. They definitely pre-warned me that it was coming but there is NOTHING that can prepare you for a morning like that. It was in clumps on my pillow, I sat around a trash can and cried and pulled it out. I was then rescued off of the floor and taken to a hair salon where they buzzed it. But my God didn't let me stay in that uncomfortable place for long. I soon got a text from a high school student I led Bible study for that was filled with verses about our confidence being in Christ, not in elaborate hairstyles or outward adornment. Mind you, she didn't know I lost my hair at this point, no one did.
Anyways, these week long stays at Moffitt continued for 8 treatments. In between my weeks at Moffitt, I always ended up at a hospital close to my apartment because my counts were too low for me to be anywhere but the hospital. They monitored me and wore masks around me, always. Whatta life.
In the beginning of October, I finished chemo!!!! We went in for my scan, obviously hoping for the best, but didn't get the best. The tumor was still there and I had to start radiation immediately. I asked for a break and started radiation mid November. Thankfully, I only had a month of those and went in for another scan in February.
February 5, 2014, I could finally claim remission! I was blessed with less than a year in the war, but wasn't about to leave other fighters to fight alone. February 5, 2015, the Lord used my life to start a non-profit organization called Spark the Way. We exist to bring light to young adults affected by the darkness of cancer. We exist to encourage, love, support & just be there for other high school kids, college students and young adults who are fighters, survivors or caretakers of someone fighting. We exist to spark up the light that outshine any darkness: fear, depression, insecurity, etc. We exist to love!
So this is me :) This is Madison Miller and I am a very excited survivor fully prepared & equipped to stay in battle with other young adults until cancer is gone from the world. Until then, cancer has no limits, and neither does Spark the Way!
When I went to the outpatient center at 34 years old, the furthest idea from my mind was that two hours later I would be leaving with the diagnosis of cancer, but, that is just what happened. For a couple of months I was being treated for minor rectal bleeding. Assuming that the bleeding was from a hemorrhoid, the treatment was conservative, and when the digital exam, after the bleeding returned, yielded nothing, thankfully, my OB/GYN referred me to a GI doctor for an evaluation and colonoscopy. Luckily, we had great insurance and there were no problems getting scheduled.
The day leading up to the colonoscopy was spent discussing our upcoming trip to New York City for St. Patrick’s Day to watch my husband, who is a firefighter, march in the St. Patrick’s Day parade down 5th avenue. We discussed lunch plans, since, I was starving due to the prep. After the exam, my GI doc walked into the room, blurted out, “we found a tumor, its cancer, you better follow up with an oncologist,”, left the room immediately, and the nurse started to cry. That was it! Just like that!
The next couple of days were spent getting every test needed, finding the best GI surgeon, which we found with Dr. Jorge Marcet at Tampa General Hospital, and scheduling a colon resection, hysterectomy, and possible liver surgery due to the metastasis to my liver, which was originally missed in the first CT scan. At 34, this is was what I was planning!
We have been lucky to have found an oncologist that recommended we go to Moffitt. The past six years have been very difficult, from thinking we were done after the initial treatments, to recurrence, clinical trials, countless PET Scans, CEA tests, CT scans. But, through this all we have discovered a support system of friends and family. We have also discovered which friends and family weren’t there for us in our time of need. I know that we could not have been as successful as we have been if it were not for our friends who help out without even asking, our family members, our children, the exemplary staff at Moffitt, and my will to beat this cancer. Of course, to fully give credence to what I have had to endure, I could write a novel. If I was to write a novel, though, a big part of the story would be told about Moffitt Cancer Center and what I have been able to obtain through my oncologist Johnathan Strosberg, his PA Tiffany Valone, and their excellent support staff at the GI clinic.
So, if this is a story, and you enjoyed it, than stick around for the sequel, because I am!
For the past 13 years, I have been the CEO of Heart To Heart Home Care. Advocating and facilitating care for those in need. I never imagined that I would NEED the care for myself. On August 26, 2013, I was diagnosed with Stage III, Large B Cell, Non-Hodgkins Lymphoma. I had 5 inoperable tumors throughout my body, the largest one being about 9 inches in diameter – pressing on my kidney and diaphragm. I immediately underwent R-CHOP Chemotherapy for 8 hours a session (being allergic to one of the five chemicals), every 21 days for 6 treatments. I lost all of my hair on my entire body within 12 days of the first treatment.
In January of 2014, I learned that only 4 of the 5 tumors “responded” to the chemotherapy and the largest one actually grew. I was referred to my life-saving Moffitt Cancer Center Lymphoma Oncology Specialist, Dr. Lubomir Sokol at the Malignant Hematology Clinic. He contacted my local oncologist; and, together, they comprised a new formulation of chemotherapy, known as RICE and formulated an entire Treatment plan, to include subsequent forms of treatment in order to “cure” me. After a few of those horrific treatments, the cancer was gone, according to the PET scan findings. However, I had to return to the Moffitt Cancer Center as an in patient for a Stem Cell Transplant. It was then that I was fortunate enough to be assigned to my life-saving Moffitt Cancer Center Blood & Marrow Transplantation Specialist, Dr. Frederick Locke.
From what I understand, 280 Million stem cells were collected from my bone marrow, the baby cells were separated, removed and frozen. I received the most vile chemotherapy drugs called BEAM to bring my blood counts down to 0 ish. Words cannot properly express the precision, expertise and professional compassion I received from every single doctor, nurse, clinician and support staff during this lengthy process and during my quarantined out-patient process. After I returned home in about 3 months, I underwent 20 radiation treatments directly to the spot where the largest now, non-cancerous tumor (which had shrunk down to about 2 inches) remained. I look forward to returning in April for my 1 year “Re-Birthday” (04/07/15) for another PET scan and consultations with my life saving specialists at the Moffitt.
I thought I had pulled a muscle in my left leg in January 2014, I was feeling discomfort. I spent from January to April going to massage therapy, chiropractor, muscle therapist - each week I would receive enough relief from the pain to think I was improving. Finally the pain had gotten to the point I went to see my primary care doctor in March and was told whatever it was, was not muscle related it was nerve related. I was given pain pills and an MRI was ordered. By then the pain was increasing rapidly to the point of every other day a spike in pain, after two attempts at an MRI I was finally able to lay still and went right from the MRI facility to our local ER due to the pain. I spent 8 days in our local hospital where a large tumor mass in my pelvic area and spine was discovered. A biopsy was performed and confirmed presence of Cancer.
The Oncologist assigned to me at our local hospital told me the tumor was too large and located in an area that was too dangerous to operate. He told me chemotherapy typically does not work for this type of cancer but since he would not operate he wanted to give me chemotherapy. I thought to myself- why would I want to take something that the Dr is already telling me does not work?? I politely and respectfully told the doctor that I wanted a second opinion. I had heard of Moffitt through TV Commercial and exposure of living in the Tampa Bay area.
I received an appointment immediately and after that first appointment I knew I was in the right place for my treatment.
Beginning from the valet staff, my first point of contact I observed the people who work at Moffitt have a happy, "I love my job and I care for the patients attitude." It is very noticeable to an outsider coming to the facility - I remarked several times about this and learned that many people who work at Moffitt have either been a patient or had family/friends treated at Moffitt and were so impressed they wanted to work for Moffitt.
The Oncologist at the prior hospital who was treating me had taken all my options away except for chemo off the table. Dr. Apte was my primary care Oncologist at Moffitt. He quickly told me that he was putting all my options back on the table and he would build a team to treat me and immediately referred me to Dr. Gonzales and Dr. Tran for surgical evaluation. These two gentlemen are rock stars in my eyes. They were not afraid and were willing to operate in what I later comprehended to be a very risky and dangerous surgery. They were very honest and forthcoming about the potential risks I faced with this surgery including potential loss of my leg and even death. These fine surgeons spoke to me in a way I could understand and comprehend what my options were, as well as the risk and the reward. Dr. Tran prepared me mentally for losing some or all the use of my leg.
I later learned that during my surgery both surgeons would come out periodically and update my family. After the procedure, they gave my family a complete and detailed overview of the nearly 9 hour surgery
Cancer does not, will not and will never define who I am. Today, just 5 months after my highly complicated surgery I have made adjustments - I can ride my bicycle I got a special toe clip to keep my foot from falling off the pedal. I go fishing my NEW leg brace allows freedom and provides balance.
I believe no matter how bad the circumstance you can find something positive- going through this cancer journey has shown me that this world is filled with kind, caring, genuine people who want to help you. I am humbled and extremely blessed at the kindness of people when times are tough.
"Cancer does not define who I am."
Fast forward a year later. We had moved in to a beautiful high-rise overlooking the Hillsborough River in Downtown Tampa and had both taken new jobs. Our wedding plans were in full swing. We would be married on December 1st, 2012 on the 10th floor deck of our building, overlooking the Tampa skyline. Two months later our friends and family, and even the photographers, are still talking about the wedding and all saying the same thing; it was a beautiful celebration of love and affection. I couldn't agree more.
We spent six days in Jamaica for our honeymoon and then came home to begin our married life together. Next on the list, my semi-annual check-up at Moffitt. When we met with Dr. Jonathan Strossberg to review my test results, I knew from the moment he entered the room that it might be time to strike the word "routine" from my cancer vocabulary. He informed us that a small lesion on my liver, that had tested "negative" over a year ago in a PET scan, had grown in size. He wanted it biopsied. While I was more concerned with how to fit a biopsy in with my busy work schedule, Linda fell to pieces. "Sweetheart, it's nothing" I tried to reassure her. "It's already tested negative once before. I'm sure it will be fine." The biopsy was scheduled for December 28th.
Our third New Year's Eve together arrived a few days later and we had reservations for a romantic dinner at Charley's Steak House. As we were driving around that day, buying a bottle of champagne for our midnight toast, my phone rang. "Dr. Strossberg" the caller i.d. flashed. "I'm sorry to call you on New Years Eve with this news....."
With that phone call it seemed like my fairy tale life had come crashing down. One day shy of our one month wedding anniversary God decided it was time for a new challenge. Once again, my concern was not for my health, but for my new wife and my sons, parents and family to whom I would have to tell, yet again, I have cancer.
We met with Dr. Strossberg two days later. He said there were several positive factors including the fact that the lesion was still small and slow growing. My treatment plan called for surgery followed by six months of chemotherapy.
The Infusion team at Moffitt International's was amazing. They smoothed the road of this difficult journey with their compassion, care and support. I was even able to make it to a few Rays games during my 6 months of treatment.
It has now been a little over 18 months since I completed chemotherapy. While there's been some minor bumps in the road along the way, I'm happy and healthy and life is good.
On November 30, 2009, I was first diagnosed with stage 1B2 Cervical Cancer, Adenocarcinoma. My fight against cervical cancer began with chemotherapy and aggressive radiation treatments. During this time, I also underwent a series of in vitro fertilization to cryopreserve or “freeze” my eggs in the hopes of one day using a surrogate to start a family. After a long fight, followed by two years of successful PET/CT Scans, my MRI showed no evidence of the disease.
Unfortunately, on September 25, 2012 (my 32nd birthday) I had a biopsy under anesthesia after having similar symptoms from my first diagnosis. Three very long days later, I was officially diagnosed with recurrent cervical cancer. Once my case was examined and reviewed, my cancer treatment team at Moffitt recommended a Pelvic Exenteration. The American Cancer Society defines a pelvic exenteration as, “a major surgery in which the uterus, cervix, ovaries, fallopian tubes, vagina, bladder, urethra, and rectum are removed.” At 32 years old, I would have to endure a radical surgery that would forever change me physically and mentally. This choice was not made without countless hours of education, research, and the decision to empower myself to take control over every minute of my medical care moving forward. I received multiple opinions regarding my treatment plan and met with every single person on my surgical team, asking questions at every turn. I was not going to undergo such a radical and invasive surgery without knowing exactly what I was facing head on. My meetings with my Oncologists would often include a room full of family & friends all armed with notebooks filled with questions.
On November 2, 2012 I underwent the 12.5-hour surgery at Moffitt. I spent the next thirty days in the hospital battling several obstacles in my road to recovery. It has been long and extremely difficult year, but the fight is in me to get better and I could not do it without the support from my army of loved ones & my treatment team at Moffitt. Though I face new challenges every day, I continue to do my best to educate myself and other woman during their fight.
The Teal Recovery Project is a nonprofit organization, which was founded for me by nine close friends who wanted to do something special during such a difficult time in my life. I will continue to live the mission to help raise awareness for cervical cancer through empowering and educating other women affected by this disease. The teal ribbon serves as our anchor, which reminds us to “refuse to sink” and to always stay grounded when seas are the roughest. For more information or how to get involved, please visit www.thetealrecoveryproject.org.
I was originally diagnosed with stage 1B cervical cancer in July 2007 at age 43. I had a successful radical hysterectomy and my prognosis was excellent. All I had the first go around was surgery. No chemo and no radiation. I was shocked to learn five years later at age 48 that the cervical cancer had spread to my lungs. That's when I sought out Moffitt. Upon our first visit, my husband Cliff and I were filled with hope. Dr. Patricia Judson and her team were so positive and encouraging. I did all of my treatment, scans and clinic visits at Moffitt at International Plaza - great place!
Dr. Judson encouraged me to lead my "normal" life while undergoing chemotherapy - modified, of course, based on energy level, exposure to germs, etc. I found that doing routine things helped me feel "normal," or what I like to call a "new normal," and lifted my spirits. I was able to continue my roles as a wife, mother and volunteer. And I was able to stay physically active with my workouts, albeit greatly modified. Getting out and exercising was therapy.
I would tell other cancer patients to stay mentally strong and positive. It's as much a mental battle as a physical battle. I found Isaiah 26:3 helped me, "You will keep in perfect peace him whose mind is steadfast because he trusts in You". My faith kept me strong and hopeful.
Jerry & Trudy
Jerry Mulvey and his wife Trudy have been married for nearly 49 years. One of the biggest challenges during their marriage came just three years ago, when Jerry was diagnosed with stage three multiple myeloma, a blood cancer. Jerry and Trudy decided to fight back and formed “Team Mulvey.” The two-member team promised to support each other through treatment and beyond.
Jerry went through chemotherapy and had a stem cell transplant at Moffitt Cancer Center. Eventually he started to feel better, he says because of the extraordinary support of Trudy, a positive attitude and a good sense of humor. Exercise was also a key part of Jerry’s recovery. Immediately after his transplant, Jerry began exercising again and just eleven months later he biked 180 miles to raise money for charity.
Two years later, he was at it again, this time biking 100 miles to benefit Moffitt’s “Cure on Wheels.” Trudy was involved too, as a ride support volunteer. About a year ago, Team Mulvey began volunteering at Moffitt. Now they share the support they had for each other, with other patients and families who are fighting their own cancer battles.
When Jesse Fritz was diagnosed with cancer, he was a 24 old young man with the freedom to do anything. After his diagnosis, he says his world turned upside down. Jesse says, no one his age thinks they can have cancer. Jesse initially waited to have a bump on his arm checked out because he did not have insurance. Once he did, he found out he had stage 4 rhabomyosarcoma. His treatment has involved several rounds of chemotherapy and radiation, surgery, and he still needs a bone marrow transplant.
During his treatment, Jesse experienced neuropathy, a side effect from his chemo. Neuropathy causes a loss of feeling in the fingers and toes. Jesse deals poker for a living and says until he can go back to work, he will not consider his battle against cancer complete. Jesse says it's tough watching his friends play flag football and basketball knowing he can't join in.
Despite these setbacks, Jesse says, cancer is NOT a death sentence. Jesse believes cancer changes your life in some ways but is not the worst thing in the world. Jesse has these words of wisdom for fellow patients, “Never ask why me? There's no answer for that. It's better to ask why not me? I can give you an answer for that one, because you can beat it and progress from you.”
After an initial diagnosis of Melanoma and surgery I did one year of interferon (a form of chemotherapy used to treat skin cancers). Shortly after that, several doctors agreed that a suspicious spot on my pancreases needed to be addressed and so I had a distal pancreatectomy in July 2010. Thankfully, that spot was benign. Complications (fistula) required debridement surgery in November of 2010. A few months later a couple spots appeared on my lung and in August 2011 I had a lung wedge resection which confirmed metastasis. September 2011 was our first visit to Moffitt for discussion of future management. In February 2012, we returned with multiple spots on the lungs. That is when I started Yervoy. In April 2012, the treatment was stalled to preform radio static surgery for two new spots on my brain. The neurology department at Moffitt confirmed and monitored this procedure and it was incredibly successful. No signs of the tumors were found in subsequent MRIs. I resumed the Yervoy treatments and completed the protocol in 2012. The treatment proved unsuccessful but now I qualified for a new clinical trial for anti-PD1. It began immediately. I am now in my second year of that trial, the maintenance phase, and have remained stable for two years. Unfortunately, I had brain surgery at Moffitt with Dr. Etame in October 2013 for a new lesion on my brain. The surgery proved extremely successful. I recovered very quickly and have now resumed my clinical trial with much success. The two and a half hour trips to Moffitt from Vero Beach are worth every mile because of doctors like Dr. Etame and Dr. Gibney.
No one thought I’d still be here to share this story five years ago, or even two years ago. I’ve been through a couple unsuccessful treatments, but I consider them successful in the sense that they bought me more time. With each day there is new hope. The treatment I am on now is working and it wasn’t even available when I began my cancer journey. There are so many new discoveries out there. So never give up! Being such a great teaching hospital with such cutting edge discoveries and trials has been an incredible blessing in my journey.
After suffering five years of debilitating symptoms resulting in paralysis from a life-threatening benign tumor at the base of my brain, I learned about Moffitt Cancer Center. In the tumor’s critical stage, Dr. Frank Vrionis and his surgical team in Neuro-Oncology were able to successfully remove it in 2005. After only three months of recovery with therapy, I can now focus on living the good life at 77! Since surgery, I have enjoyed 8 years of traveling and doing all the things I’ve done before. My family and friends refer to our experience as “our family miracle at Moffitt.” I pray my story will inspire others to never give up hope and faith because help is available thanks to the very best care, technology and research found at Moffitt Cancer Center.
I was retired and were enjoying life in sunny Punta Gorda, Florida. Then in 2010 I was diagnosed with esophageal cancer. I never had any serious health issues, and thought I was pretty much 'bullet proof'. The best advice I got was to go to Moffitt for a second opinion. After the interview realized I would get the best and latest cutting edge care Moffitt. The doctors, chemo, radiation, and surgery were at one location. I would not have to travel from one end of town to the other for treatments or doctor visits. They even have a guest house available for out of town patients. The other positive experience I noted had to do with the staff at Moffitt. During my entire time at Moffitt I can't recall any technician, nurse, or doctor that acted like they were having a 'bad day'. Very commendable considering the stress in their jobs.
My hair never grew back after chemo. The result, I tell friends, is people no longer confuse me with Tom Selleck, and ask for autograph. (joke). My best advice for others is to have a positive attitude! From the start I told myself "I can beat this thing.” Don't be afraid to talk about it with friends and family. I had friends that had gone through cancer treatments relate their experience. Helped a lot to anticipate various stages of treatment. Since recovery, I have done the same for acquaintances with cancer. If you have a faith, use it. I received enormous amount of strength from my faith and church family.
On Dec. 8, 1998, I was working for a consulting firm, getting paid more than I was accustomed to and I was “on the bench.” In those days, before cell phones were widely used, that meant I was sitting at home, waiting for a phone call to tell me what my next assignment would be, and wondering how much longer I could get paid so much for doing nothing. I got two important phone calls that day. One was from my employer, about a meeting I was to attend the next day, I was getting laid-off. The other call was from my doctor. He didn’t have a nurse or receptionist call me. He did it himself. “Remember that extra blood test you had me include with your physical … The PSA? That is supposed to be under 4.0.” (At my age it really should have been under 2.0.) “Yours is 6.6. You need to see a urologist about prostate cancer.”
The reason why I requested testing for prostate cancer in my annual physical 16 years ago is because my father had prostate cancer. Although he lived many years with it, it was never fully eradicated and his death was related to it.
Although I had a false alarm from falsely elevated PSA test results after my surgery, I’ve never had to have any further treatment such as radiation or chemotherapy.
I hadn’t thought much about Moffitt Cancer Center before that day. But Moffitt has played a big part in my life since then. I was diagnosed with prostate cancer just before my 42nd birthday and came to Moffitt for a second opinion. I was impressed and decided to have my treatment at Moffitt – a prostatectomy.
Facing prostate cancer and unemployment in my early 40s led to a mid-life, with overtones of end-of-life crisis. That led to a determination that my next employment should be someplace where I could be proud of the end product; not just my contribution. Moffitt topped that list.
In early September of 2012, I returned from a trip to Russia where my wife and I help support an orphanage. Two of our grandchildren were adopted from that orphanage. It was my eighth trip to Russia. After the flight I developed a cough which I attributed to the recirculated air in the plane. When the cough did not subside, I saw an ENT physician and the cough was not cured. I then went to my Internist who placed me on antibiotics which were equally ineffective. I then had a chest x-ray which showed Fourth Stage Branchioalveolar Carcinoma. I met with a surgeon here as well as a pulmonologist. There was never a question that I would be treated at Moffitt. The original thought was that I would have surgery, so I met with Dr. Lary Robinson. He indicated at the outset that this was an inoperable case. I immediately went to see Dr. Scott Antonia, with whom I bonded at the first visit and so my treatment began. I was fortunate enough that there was one opening in a clinical trial for which I signed up at that time. I never had any reservations about a clinical trial, as Dr Antonia felt that it was the best course of action. That treatment, along with chemo therapy began in early February 2013.The result of the treatment has been most successful, and I have not had additional chemo since May of 2014. As of November 6, 2014, the cancer remains arrested.
I had never been sick until this time, at age 76. From the time I gave my car to the valet, to the wonderful Margie, and Marty, at reception, I have had an unbelievable experience. As I said, I never knew that such medical care existed. The nurses in CRU are a cut above great. To a person, they are totally competent, and above all, caring. No matter what department I was involved in, the care was outstanding, by staff which is solely focused on the patient.
As this journey continues there are thoughts which come to mind. Do not allow the disease to define who you are. Pay careful attention to your body’s messages. This is most important in my case, as there is no pain to alert me of a problem. Continue your daily life to the greatest extent possible. At Moffitt I have access to the finest in research and treatment.
I am most fortunate to have an outstanding support system, consisting of my family and a few close friends. My personal mental strength would not be possible without them.
I will continue to go forward with an abiding faith in the abilities and caring nature of the Moffitt doctors and staff, for which I will be eternally grateful.
Beginning in the late summer of 2011, I began to lose weight unintentionally. At first, I thought it was the result of better eating habits, but when my 6'5" frame went from carrying 250 pounds down to 230 and then 220, we knew something was wrong. My wife urged me to see a doctor and finally threatened to drag me to the doctor. On Feb. 2, 2012, a CT revealed tumors on my pancreas and our world turned on a dime. The gastro specialist said the only place he recommend we go for treatment was Moffitt. By Feb 16, the cancer was confirmed and we met with the surgeon on four days later. We were grateful for a surgical option, even though is meant a full pancreatectomy and life as a Type I diabetic. Our optimism increased after we met with Dr. Pamela Hodul. She is extraordinary, skilled and compassionate. Our family often says a toast to her! I proudly call my scar the Hodul Shark Bite.
After surgery on Leap Day (Feb 29, 2012), and weeks of recovery, I was scheduled to begin 6 months of chemotherapy in May. The oncologist, Dr. Gregory Springett informed us of a clinical trial for a vaccine. We were woefully naive about trials, but realized an opportunity to fight off any remaining cancer cells was an option to seize. I received chemo once a week for three weeks, then one week off for six months. The vaccine was delivered at the same time in a series of six painful shots. I am an optimistic person by nature and that helped me in many ways during this experience, but it became evident very soon that I underestimated the impact of the surgery and chemo. Not only the physical changes, pain, discomfort, nausea, and new life as a diabetic, but the emotional changes. I truly thought I would be able to go back to work after surgery and have chemo treatment at the same time. Instead it took everything out of me. This was very difficult to admit to myself and others since I had always been a very active and strong man.
My family and I have learned many lessons along this journey. When you are in the midst of the crisis it is not clear what those lessons are as you have little time for reflection--you are simply trying to get through one day at a time. Sometimes, just one hour at a time. Five things I have come to understand with great clarity. First, listen to your body--if something doesn't seem right, have it checked. Second, and this may be harsh, but when doctors tell you, "we think you will tolerate chemo well", readjust your expectations. It is not an easy process. Be kind to yourself and don't batter your mind with thoughts about why you are not handling it better. Third, if you live in the Tampa Bay area and have a pancreatic cancer diagnosis, go to Moffitt--the institution, its doctors, nurses and other staff saved my life. Fourth, and perhaps most importantly, nurture your relationships before crisis hits. I could not have survived without my family and friends. I never went to one doctor appointment or chemo session alone. Everyone needs a support system--even if it is two people you can count on or an army of people who want to help. Let them. Finally, have faith, hold onto hope and optimism and look toward the other side of darkness.
In February 2014, I was diagnosed with bi-lateral breast cancer at the age of 29. I quickly got an appointment at Moffitt which is an hour and a half drive to consult with a breast surgeon I had already consulted with 2 other surgeons prior to the visit at Moffitt but I wanted another opinion. Immediately after meeting with Dr. Catherine Lee, we knew this was the place for me. Dr. Lee was so thorough with her plan of action and conveyed such care. Shortly after, I saw Dr. Ismail-Khan, my oncologist, to set up chemotherapy treatments prior to having surgery. Dr. Khan ordered a few baseline scans prior to having treatment to make sure the cancer had not spread. My lymph nodes were negative when biopsied but they still checked. A few days later, I received a phone call from my doctor saying that I had a large tumor on my left kidney that looks cancerous and a small spot on my left lung that also looks like cancer. They oddly thought that these could be completely separate cancers, which is pretty rare. Fear quickly sank in. Breast cancer had just sunk in and now I had to process possible metastasis or MORE cancers. I had a 1 year old, a husband, a great new job and I was certain there was no room for cancer in my life!
In April 2014, Dr. Wade Sexton, a Moffitt urologist and Dr. Eric Toloza, a Moffitt thoracic surgeon, teamed up to remove my entire left kidney and a portion of my left lower lung using the Divinci Robot. Everyone told me that surgery was very serious and would require long healing time. I can honestly say the surgery was such a breeze! I had 7 small incisions and was up walking around the very next morning after surgery. The pathology on both tumors came back as cancer. However, neither tumor had spread. Both were completely SEPARATE CANCERS from my breast cancer. So I’m telling you, I had FOUR PRIMARY CANCERS in my body at the same time and I didn’t even know it! The kidney and the lung cancers were both removed surgically and required no chemotherapy.
About a month after the kidney and lung surgery, I had 6 rounds of chemotherapy for my breast cancers. Then, in late September 2014, Dr. Lee surgically preformed a bi-lateral mastectomy. That surgery was also a breeze and there were no signs of cancer in my lymph nodes. I will continue to get Herceptin infusions for my breast cancer every 3 weeks until the end of May 2015.
I will say that Moffitt Cancer Center is the BEST place for me. Every visit with a doctor, I feel so loved and cared for. Each doctor always spent so much time talking with my family and me, plus always answered any concerns or questions that we have or had. I was never rushed out of a room or made to feel like I was just a number. The team approach was also very comforting. All of my surgeons; my oncologist, my cardiologist, my geneticist and my nurses communicated about my treatment. Everyone was in the loop when it came to my overall health and well-being which took a lot of stress off of my shoulders because I did not have to constantly bring all of my doctors up to date with my health. As odd as it sounds, my husband and I actually enjoy taking trips down to Moffitt. It’s a place I will frequent for the rest of my life but I’m so grateful I’m alive and get the opportunity! I owe my life to Moffitt! They saved me!
If you have just been recently diagnosed with cancer, I’m sorry. It’s never a word you want to hear. The best advice I can give to you is to live in the moment. Live day by day. No one is guaranteed tomorrow but you’re here today so live your life and stay positive. You have so much to fight for!