People think I’m a COOL GUY.
I’ve hung out with Michael Jordan before college basketball games at North Carolina. I flew jets off aircraft carriers, dodged missiles and never screamed or whimpered once. I’ve done some really cool stuff with Navy SEALs, but I can’t tell ya much about it. And I’ve strummed Bruce Springsteen’s guitar while the E Street Band played “Born to Run”.
But you gotta trust me on this one: there’s nothing cool about cancer.
Believe it or not, as I stand here, I don’t even like to talk about cancer.
Like, Let’s move on, you know? But I’ve found cancer never completely leaves us, and I think bearing witness – here and now before you - is the greatest weapon we have against this cruel disease.
In retrospect I think keeping silent about my cancer was a twisted way to be cool about it. I had been getting regular blood tests to look for prostate cancer. (For the record I never had any other indication I had cancer - it was simply a consistently abnormal number from a blood test. And I’m amazed that lots of men don’t get a PSA test - you know! IT’S ONLY A BLOOD TEST!
Finally, I had a biopsy – and it confirmed that I had Stage 1 prostate cancer. But the doctor reassured me that I had time – that conveniently suited this cool guy’s denial! So rather than going under the knife, I watched and waited, and I indulged in New Age mysticism and Oriental medicine – and the cancer was halted for a while.
I suppose my daily discipline of mediation and tea ceremonies didn’t hurt, but over time my PSA was starting to rise again, so I got another biopsy; this time the cancer had progressed to Stage 2. I almost waited too long. Only dumb luck saved my life. At that moment I realized a few things: I knew no amount of herbs, acupuncture, mediation or crystals were going to heal me. Also, I knew I needed help, so I began to reach out to friends and family and built what I called a “SYMPHONY OF SUPPORT” .
I found that once I put out there, there was a sense of relief in revealing the secret; – and I found a new sense of strength from growing a team of support.
I learned that people generally follow the emotional lead of the person with the illness. I would not believe in naïve happy endings and I would not wallow in chaotic crisis. I was going to fight this methodically; I would be the smart, BRAVE FACE of this battle. But let me clear - I was no saint. I went through the emotional cycles of denial, irritability, anxiety, and depression. But with the support of my symphony, I decided not to fight or hide those emotions;
I allowed those emotions to flow and express themselves.
I tried to be open and explain these feelings to myself, my family, my friends, and my symphony. I found that generally men don’t talk about these things easily so most of my symphony of support was comprised of women. But I must point out there was ONE MAN who generously shared with me his own experience with prostate cancer and some intimate details of his happy, post-treatment life.
And I found a CANCER LIBRARY that provided me information to make informed choices; and there was a humor section! I found there are actually some good jokes about cancer! “Do you know the best way to get gum out of your hair? Chemotherapy.” “What did the cancer cell say to it’s neighbor? Mind if I join you?”
But anyway, what I learned is that sometimes you need to ask for support, for help. We’re human- even men are human and need help sometimes even though its hard to ask for it.
Perhaps the biggest help came when I unexpectedly met a special woman - and I fell in love. After reluctantly telling her about my cancer, her love & support never wavered. She kept my attitude positive, tolerated my mood swings, and painted a vison of a sexy & exciting future together.
Navigating our health care system is hard enough but selecting cancer treatment options is a daunting task. I seriously considered going to Mexico, but their “cash up front” policy gave me pause, so it basically came down to two options, surgery or radiation. Both options have high rates of success but either way, I was looking at impotence and incontinence (either permanently or temporarily) and sterility (which would be forever).
My final treatment selection was based on a conversation with a doctor who thoroughly answered my questions, respected my knowledge, explored all the risks, and satisfied my concerns. In the end I chose to have my prostate surgically removed.
My symphony of support continued to help me through all the major recovery milestones. My parents provided me a place to recover surrounded by love and even allowed my dog Clint to sleep in the guest bed with me. My girlfriend, who is now my fiancé never left my side from day 1. And praise God, follow-ups revealed there are no lingering cancer cells. YES!
However, I did not walk away unscathed. Prostate cancer is especially emasculating. While I no longer depend on Depends, I do cross my knees extra tight when I sneeze and hope for the best!
While my surgeon saved my nerve cells which allowed me to continue enjoying sex… I STILL GOT IT, BABY! We have to plan for it… unfortunately spontaneity is a thing of the past.
While I have my sperm safely stored on ice in a reputable sperm bank, I call and check in on them regularly because I’m so worried someone’s going to accidentally thaw them out or maybe give them to someone else or something like that...
And while the cancer is gone, I worry about its return.
Going forward, there remain unknowns about body image, physical dysfunction, potential complications, insurance market uncertainties, etc, but I cannot control those concerns and will simply have to deal with these issues when or if they come.
I’m not going to pretend my cancer experience compares to the horrors others have endured. But any encounter with cancer will have a profound impact on your life. My past ideas about manhood have been transformed; luckily, I am “woke” enough to see a path forward toward a new definition of manhood.
My passion is more than the sum of any body parts, but it lies in my imagination, my soul, and my love of life itself. Now I actually see how this experience has made me a “better man” – with deeper relationships, self-knowledge, humility, and intimacy.
I continue my daily prayer & meditation practice
I continue placing my faith & trust in God.
I have a higher sense of mission & purpose.
I don’t curse my fate; instead every morning I count my possibilities.
We talk about being a “CANCER SURVIVOR” – as if it’s a past event, a distant battle won - but I now appreciate that we are all “SURVIVING CANCER”. The battle goes on.
I really don’t care what other people think is cool, but I think these new scars of hard-won wisdom are the best part of me.
We set goals in our journey through life, and charge with purpose until we achieve them. In our path we keep adding milestones, brought up by life; that all powerful force that claims we must rise to every challenge. But what happens if we leave that life token aside and dedicate that time just to sit with your inner self and chat. I have told so many mothers as I discharge their NICU graduates to make sure to follow up with their own health needs as “mom needs to be healthy to be able to care for her baby”. I just never said that to myself once I became a mom.I was compliant with my breast screenings as much as any women undergoing treatments for infertility would. All that came to a halt when my beautiful son arrived at 6 months of age, giving me the right to claim the title of the only profession I ever declared as a child – Mom. Since his arrival everything changed, as it should. But by focusing on his needs, I neglected my own. Had it not been for the spending money we would receive from the reimbursement for my cancer screening, I might not be here today. We have not completed that trip to Disneyland but have traveled beyond magical places at the happiest place on Earth.I look back at my life as travel albums. We now keep these images in digital folders, available for access at any time as needed. There are some folders I go into because they remind me of times spent with travel partners. I am grateful for those who have been part of my crew, even more so of those who have stayed aboard. My health journey has been filled with challenges since early in life. This made my mother feel confident that I would beat this just like everything else. I look at the folder that holds the images of the event that led to the Aha moment. The electrochemical discharge that allowed my brain to register my recently acquired qualifier. I am sure that the event has been a pivotal point for many, but the moment I sat in that leather reclining chair, anticipating being hooked up to my chemotherapy infusion was when I processed that image. I had seen that picture many times before, but with me playing a different role. I had provided comfort and support to patients and caretakers in need, including members of my family that belonged to the club I joined in 2013. As a member I was surrounded by fellow patients who shared stories about their diagnosis, treatment, and mundane life events. I entered the room still seeing them as “the other” but the moment that needle pierced my skin I drew the picture for the new entry in my health journey album with the title “I am and forever will be a cancer patient”. Before that day I had overcome the challenges of leaving things aside to complete my diagnostic process, initiated hormonal treatment, and completed the surgical intervention that was expected to be curative in my situation. I had even brushed the border of transition to another form of energy. I remember that rainy day when a friend who was visiting after my post mastectomy drainages where removed. She feared hurting me as she closed the new support bra I needed to contain the hemorrhage that had spontaneously emerged as I was eating a bowl of delicious cinnamon cereal for dinner. She followed me to my room when she saw that the warm fluid, I felt running down my side was too red to be “just fluid”. As a physician I knew I was in danger once the tiny wormy vessel started shooting a high-pressure stream of blood that reached the bathroom vanity as soon as I removed my bra. I remember telling my friend “don’t worry about hurting me, if we don’t put pressure on it I might die”. Since then, we always joke that we are truly blood sisters. I left my “successful recovery” album behind, feeling cold and wet due to the tropical rain that was responsible for her staying late in my home. I remember that once I reached the car, I started telling my husband to make sure my son knew who I was. Surgery had taken cancer away. The small vessel that decided to direct my attention to the fact I was “the patient” almost took my life. I even had issues accepting the patient role during my emergency surgery, a fact my plastic surgeon shared with my husband as I was telling him how much I loved my surgeon. My husband responded that he would not be jealous because he was sure it was the anesthesia talking. Dr. Toro responded that I was only given deep sedation, which allowed me to keep giving him instructions during the procedure. I went over every detail in my mind thinking what I had done wrong. Still my GPS continued re arranging the route around the fact that I would need to fill the box of my new chronic illness in every form moving forward; that undeniable fact did not hit home until the club at the infusion room welcomed me to their conversation.
I made it a point to take charge and responsibility of my health journey, with an excellent team of facilitators to support me in the process. The decision to place me in the infusion room was made jointly between me and my oncologist, based on the evidence provided by the genetic testing performed to the misbehaving tissue once removed. Other storms ensued along the way. At the time and to this day I have been fortunate to have chosen a group of peers that are open and up to the task of bringing their expertise to propose the best route, while willing to re calculate as needed. Specially to accommodate the needs of the one person who will carry the weight of the result of any decision, me. But there is a heavy weight that comes along with being that patient. Taking a principal role in the decision-making process caries the responsibility of being the captain at a time when you might need to allow yourself the space to be vulnerable. At the end of the day, having my vulnerability shine is something I have been known for all my life. As a child my siblings would call me “mantequilla en palito” because I would cry when faced with emotionally charged situations. As an adult I know that having the strength of being transparent about your humanity is different from allowing yourself the grace to be human. And human we are, we make mistakes, we grow, and yes we get sick and learn to be patient. We might even be threatened to be tied with a pashmina to force us to be still if we fail that lesson.
I am Maribel Campos, Mario’s mom, Mrs. Santiago, la nena de Pepito y Puruca, a driven, empath, who has difficulty letting go. I still get anxious when I schedule my medical appointments, fearing what might be found. I try to take care of myself, although that plan is not evident by my agenda. That is a work in progress that made me realize that all my projects would require multiple lifetimes to fulfil, thus comfort in engaging others and enjoy watching them set sail on their journey. And yes, I am a cancer patient that will pardon myself every time I fall and rise stronger every time, enjoy the breeze, the laughs, the snores, and the joy of my health journey.
My name is Elizabeth and I never learned to swim so cancer to me has been like being thrown into the deepest part of a pool and told to learn to swim or drown.
I was born in Mexico. The youngest of 5. When I was three years old my mother migrated to the US and brought only me along. I have lived in TX ever since. San Antonio to be exact. Because of this I was pretty much raised as an only child. For a long time it was just my mom and I.
I have many wonderful memories of my mother. For example every Sunday we would wake up early, enjoy a home cooked breakfast. She was an amazing cook. Afterwards we would get all prettied up and go to church. She was Catholic. Once church was over we would pick a restaurant to go eat at. She favored seafood but we would try different things. As a kid I didn’t care much for seafood but now I love it! When we were done eating we would usually go listen to live music and do some dancing. She loved to sing and dance and I enjoyed dancing myself. We always did something on weekends and were hardly ever home. If it wasn’t listening to music you could find us at a park, a lake, the zoo or simply a friend’s or our own home. One thing about my mother is that she was a very outgoing person and would make friends wherever she went. Language was no barrier as she only spoke Spanish. She understood English but never felt comfortable speaking it. She’d still manage to communicate one way or another. Everytime Fiesta would come to town we would be there almost every day. This however was not only for fun. She would always find a way to make extra money so she made cascarones, flower crowns, necklaces and other fun things to sell during the festivities.
I also have fond memories about the big deal she would make about my birthday. As a kid she would throw me a party at a pizza place or a park. Anywhere I could enjoy some fun, games and food. As an adult the celebration did not stop but now she would cook my favorite food and buy my favorite cake and always managed to give me a gift. She was also adamant about celebrating on the actual day. She’d say your birthday is today not on the weekend! So there we were on a random Tuesday singing “Las Mananitas” the Spanish version of happy birthday. I remember that she always took lots of photos. Not only on birthdays and special occasions but all the time. Especially of her with her plants. She had a green thumb.I am grateful for that now because if my memory of her lovely face starts to fail I have many pictures to remember her by. I think that is why I am the same way now.
My mother was one of the strongest, most resilient women I have ever come across so when she went through ovarian cancer watching this rock of a woman dwindle away was one of the hardest most heartbreaking things I have ever had to endure. Fighting cancer myself included.
Fast forward to me. Now I am a mother to two amazing boys, ages 12 and 21. Two cute kitty cats and a pretty big dog. It is now my turn to go through this. And out of all the places I was referred to the very same cancer center I took my mom to just a few years back. I was diagnosed with breast cancer on April 15,2020 in the midst of a worldwide pandemic because why not. After all they say life only throws at you what you can handle. I am about 10 months into my treatments and still have a long road ahead. My boys and my husband will now experience the same thing I experienced with my mother. My heart breaks again. In my opinion mothers are a huge part of one's life and it is very difficult to go through life without one. I was lucky enough to have mine for thirty years of my life. I feel sad for those who never even get to have one. My husband has refused to find a new one for my kids and pets if he is widowed.
As I mentioned I was diagnosed right when the pandemic started. I’ve had to go to chemo treatments, surgeries,radiations, appointments etc. alone. No one has been allowed to be there with me. It has been difficult especially because I have such an amazing support system. I yearned to have my hand held while I was getting my infusions. A simple conversation to distract me would have been nice. I remember I was there with my mother through it all and wished the same for me. Life did not allow it though. There is a virus and we are all afraid to get it because it is deadly. I understand but still the fact remains. It has been hard to do this alone. However I was able to find comfort in the nurses in the chemo room. They got to know me fairly well. I love to read. Stephen King books are my favorite and one of the nurses gifted me two. Another nurse saw my love for cats and she gave me a calendar and a few other little gifts with cats on them.
We took all the precautions, We stayed home. Wore our masks. Everything that was recommended we did it all. None of it mattered. We still got COVID. My husband, my sons and yes even myself. Now I don’t only have to battle one beast but two! To add to that I lost my two cats while I was going through chemo. They were helping me cope. I found them therapeutic. I love my pets. I consider them my kids. They were a part of our lives for a very long time. My Tigger was 18 years old and my Superman (yes that was his name and he lived up to it) was 16. My husband saw how depressed I was with their loss so he had to act fast as my journey has yet to be over. He remembered me mentioning that I have always wanted a munchkin kitten. He researched that they have a pretty long lifespan. He found a sweet lady in Austin TX that had some available. We took the drive as a family, even my oldest son’s girlfriend came along. We went to get one kitten and ended up with two because cats are like potato chips. You can’t have just one. I am now the proud momma of two precious munchkin kittens. One was six weeks old and the other 8 weeks when we got them. They have certainly helped keep my mind occupied. My other cats will always have a piece of my heart but my husband has always told me that I have a big heart so there’s plenty of room for more.
My journey is ongoing. I have a few surgeries ahead, medicines I have to take and a lifetime of check ups. I am on a road and unsure how to navigate it as I don’t even want to be on it. I am however grateful to still be here. Grateful to have the strength to keep on driving. One of the hardest parts has been seeing my husband and my boys worry about what may happen to me and the thought they might lose me.
You live with cancer long after your treatment is finished. It’s just who you are now whether you want it or not. If I happen to pass from it now or later down the road don’t say that I lost my battle because that would imply that cancer won and beat me. In my opinion treating cancer is not like a fight in a boxing ring or a conflict that you battle on a battlefield. Describing it as such would suggest that success depends on strength and skill which I have neither of. I was just thrown in. I did not train for this. So instead of comparing it to a battle or a fight, it is ok to say that I’m living with cancer or to say that I recovered from it. Perhaps passed away from it. I am learning to swim and I am giving it my all.
Always Forge Ahead with a Purpose
My name is Dan Dry Dock Shockley, retired Navy, Operation Desert Storm; Enduring and Iraqi Freedom veteran and 9 year hereditary colon cancer WARRIOR.
In 2012, I underwent my first and only colonoscopy at 51 years of age, performed by the Pacific Islands Veterans Healthcare System, Hawai'i. The results revealed 100 polyps embedded throughout my colon, rectum and anus. I was immediately referred to the Certified Genetic Counselor, at Tripler Army Medical Center, Hawai'i, for further evaluation to include germline DNA testing. It was thought I had hereditary colon cancer syndrome, familial adenomatous polyposis (FAP). However, the DNA test results would confirm the outcome.
My genetic counselor and colorectal surgeon discussed the mutation they thought I had, type of surgery and life with an ostomy. The DNA test results would take about three weeks to come back. In the meantime I was provided some resources to better understand my condition. As I initiated my personal research journey divided my efforts into three phases, DNA test results; type of surgery and life as an ostomate. I've found in life we have two choices: we can React or Respond. My
choice is to respond, by gathering information it affords me the opportunity to better prepare myself of making
logical and informed decisions.
My research efforts revealed there is limited information on the mutation. My mindset from the onset is I tend not to think of things I'm unable to control, such as medical conditions. What I can control is my positive attitude and after five decades on God's green earth my positive attitude has brought me this far, why change now.
It was at the six week point when the DNA test results arrived. My genetic counselor and colorectal surgeon scheduled a meeting to discuss the findings. It's important to to note my military experiences equipped me to adapt, improvise and overcome. I've faced personal and professional challenges. Maintaining a positive attitude has afforded me the
opportunity of overcoming adversity.
The DNA test results confirmed the diagnosis of attenuated familial adenomatous polyposis (AFAP), an autosomal dominant germline mutation. It's estimated that AFAP impacts less than .03% of the global population. Dr. Henry T. Lynch, the founding father of hereditary cancer research, is credited with discovering AFAP. My genetic counselor and colorectal surgeon were colleagues of Dr. Lynch.
Based on these findings it was in the best practice of medicine to undergo total-proctocolectomy w/ileostomy
surgery. Throughout this process my Certified Genetic Counselor and Colorectal surgeon encouraged me to read about the mutation, type of surgery, life as an ostomate and the routine opthomology examinations
and endoscopic procedures of my stomach and small intestine. Since I've researched my condition and discussed it w/my family and medical team, I was mentally prepared for the surgery.
It's important to note, I didn't have any symptoms or family history. Surgery was performed two weeks after receiving the DNA test results and one of the polyps was an 8cm tumor, Stage 0 cancer, which was successfully removed.
As I prepared for my life w/a hereditary colon cancer syndrome and a permanent ostomy, I adopted the following four words to reflect upon:
Attitude = 100. My positive attitude was vital in my ability to overcome adversity.
FAITH = Full Assurance Influenced Through Hope. An acronym I created after my diagnosis.
ADAPT = Attitude Determines the Ability for a Positive Transformation. An acronym I created after my diagnosis.
Purpose = Educate the world about FAP, continuing the legacy of Dr. Henry T. Lynch, on the importance of early detection in hopes of saving lives.
There seems to be a limited amount of information on hereditary colon cancer syndromes. My hopes are by sharing my journey it will benefit the medical
community in the coming years and decades.
Sharing my journey is important to me, being a source of inspiration and encouragement. By sending out positive thoughts, I receive them back tenfold.
I have a metaphor of LIFE and BASEBALL. What do they both have in common? LIFE and BASEBALL do not have a time limit. When a baseball game goes into extra innings, I think of it as free baseball. As a 9 year hereditary colon cancer WARRIOR, my life is in extra innings and I'm enjoying FREE BASEBALL.
In closing, there's an old cliche we may not be able to change the direction of the wind, what we can do is adjust our sails. After 22 years in the Navy, I'm good at adjusting.
That's my story and I'm sticking to it!
Always Forge Ahead w/a Purpose!
Written in November of the cruel year of 2020
I was diagnosed with Acute Myeloid Leukemia with a FLT-3 mutation on May 17th, 2019. Approximately 270 days and a stem-cell transplant later, I was declared free from that same cancer. And now, about another 270 some-odd days later, I find that can state these facts out loud. I can state them out loud, but I find I have not been able to internalize my experience in a way that leaves me free from cancer’s shadow. I desperately want those close to me to look upon me strongly, not gingerly or cautiously. Yet, I often gaze upon myself gingerly and cautiously. I want to silence the thoughts of relapse. I want the physical experience of my cancer journey to be pulled from my hip flexors, my facia, my neurons, my blood; to be pulled up – into - and through these words and released with a blessing over the waters into cold, night air.
We don't look alike: she's blue-eyed, pale-skinned, and had blonde hair, while I've got dark eyes, skin, and hair - more like my dad. I'm several inches taller, an apparently totally different body type. She has large breasts, and only when I was pregnant with and nursing my daughter did I. We both have longish noses, though - not quite aquiline - and we both wear a lot of thrift store clothes...her thrift store "eyes" are still impeccable. My mother Ruth and I are both hunter-gatherers, collectors of way too much beautiful/weird/objects/textiles...stuff...hers verges on humorous and the human-made - phallic banana and carrot collections in too many media to mention, cats, of course(?), amazing antique (from thrift stores) lace, and, my favorite, a sprawling collection of women- and girl-figures from all parts of the world, flowing from her small fireplace mantle, her "goddesses". My collections veer toward raw nature: broken bird's eggshells, seeds I capture and rarely plant, fantastic found roots and other parts of trees, rocks from every creek I step into, seashells, seaweed, and other extracts from every visit to every seashore, apparently irresistible feathers and bones...
As I stood in front of the audience at the TR Ranch that brisk October evening, I thought about life and how it has a way of surprising you.
If you had told me five years ago that I would be on a stage singing a cancer song, or any song for that matter, I would have said you were crazy.
Dear Friends and Family,
December 2019 marks 10 years since I wrote my last holiday letter. This year I am breaking through my writer’s block and re-establishing this tradition. Here is why I haven’t written. After my last letter in 2009, I was diagnosed with high-grade soft-tissue sarcoma in my left thigh the volume of a softball. I would spend the entire next year fighting myxofibrosarcoma made up of mean pleomorphic cells. I had a 40% chance of surviving past 5 years.
2010 was filled with two surgeries, twenty-five rounds of radiation and six 21-day cycles of chemotherapy. Chemo side effects resulted in three blood transfusions and five trips to the hospital. Kayla was in 7th grade when we received my diagnosis and in 8th grade when we finished chemo.