Archive for the ‘Survivor Spotlights’ Category
Welcome Home Dad – Francis O’Connell
Frankie O’Connell Jr. passed away in April 2004 after a ten month battle with testicular cancer. With his passing he left behind 3 children, Jaclyn, Frankie III and Ryan. Nine years later, as a freshman in college, Frankie III, composed a charcoal drawing that really shows a glimpse into how testicular cancer and the loss of his dad has affected his life.
In Frankie III’s words:
Welcome Home Dad – Francis O’Connell
This piece was a charcoal drawing done for my Drawing II. The prompt was a transgender self portrait, but I pushed that to be more of a metaphorical sense. The hammer and beer bottle symbolize the things I never got to do with my dad for the first time, build or fix things, learn how to construct, and have my first beer with my dad. My dad passed of testicular cancer when I was nine and that what the misshapen and deformed genital area represents. So to fit the transgender guidelines, I feel that I missed out on learning these things that society says makes you a man. This piece is 6 feet tall by about 2 and a half feet.
“The Monster Between My Legs”
I was showering when I noticed that my right testicle had grown in size and had become hard to the touch. It had always felt a little raw and tender when compared to the other one but I never really paid any attention to it. When I noticed the swelling, I went to see my doctor who told me that it could just be an infection (although he was worried when I told him that it did not feel painful). He gave me a course of antibiotics and told me that if the swelling did not recede after ten days I should go and see him.
After eight days there was no improvement so I decided not wait any longer. I went back to see my doctor who told me that I should take an ultrasound and he added that I should go straight away. That last statement took me aback but he still did not mention the ‘c’ word. I went to the clinic, dreading what the outcome will be. After the radiologist performed the ultrasound, he told me that most probably I have seminoma cancer and judging by the size of swelling it had been developing for about three months. He told me that I had to be operated to remove the testicle as soon as possible, within the following two weeks, the sooner the better. I was devastated. A million thoughts were running through my mind, but I was just too numb with shock to stay asking anything.
I went home to break the news to my wife (I had not mentioned anything to her, thinking that this was just something trivial). She went ballistic, most of all because I had never told her anything beforehand. After the first shock passed we tried to get stock of the situation.
We arranged a meeting with the surgeon who was going to perform the operation. He stayed explaining the procedure he was going to perform and then asked us if we had any questions. He was bombarded. Could I have transmitted cancer to my wife when we made love? No was the answer. Was the other testicle affected? No again, the scrotum has a flap, which separated one from the other. Was there any spread? That will be assessed after the operation and the biopsy made. What would be the recovery time? 2-3 weeks. Would the loss of a testicle affect things like voice, testosterone production? One testicle should cope. The questions just kept on coming and he just kept patiently answering. A date was set for the coming week.
It was the longest week of my life, my wife was a pillar of strength and supported me in every way possible. On the day I felt as if my guts were in knots. By the time we arrived to the clinic I was close to loosing my composure, the stress was just unbearable. Not just the thought of the operation was on my mind, but I was worried that the cancer could have spread and that my wife would not see me the same way after the operation. It was a very dark period in my life.
Once the operation was over and done with I came round in a bed with my wife by my side. The first news from the surgeon was positive; there did not seem to have been any spread, the cancer was confined to the testicle and did not break the surface or reach any vessels. For that at least I was thankful.
After I recovered from the operation I had to undergo scans to be sure that no further spread had occurred. The results were that I was clear. It was of little consolation however since I was feeling very depressed after what I went through. My wife was detrimental in helping me come out of it. Her motivation and support were invaluable, I will be in her debt forever.
About five months after the operation I started hearing a voice in my head telling me that I needed to do something about this disease. I just could not stand by and do nothing. In the end I started writing a book, it took me about two years to complete. It’s called ‘The Monster Between My Legs’ and is actually a novel with a humorous theme inspired by what I went through. All the proceeds are going to help local cancer foundations that are doing so much good work. It’s my way of trying to help get some awareness about testicular cancer and get some much-needed funds to these institutions.
My Own Day of Infamy
It was like any other monotonous day on the ship. Wednesday, August 25th, 2010 to be exact. I had just finished my 14 hour shift for the day and my work out in the gym so I was more than ready for a shower. Lucky for me, the water on the George Washington was rather warm that day. Warm water is a big deal at 9pm (2100) being on an aircraft carrier of 4800 sailors. Figuring that 80% of the crew is day shift, like I was at the time, there are about 3800 sailors taking a shower at one time within a four hour window. Anyway, I digress; warm water on the floating city is always something to look forward to. So I’m taking my shower and my time doing it…then ouch. Ouch in the shower can be rare, this time was peculiarly rare solely based on the location of the pain. I carefully went over my left testicle again, more gentile than before. It was extremely painful and very sensitive. Now I realized I should compare and contrast. I softly felt my right, noting that under the skin was smooth, all around. I checked the left, not so much. It felt as though there were multiple calluses encompassing it, and quite tender. Well I did not like that of course. Like any other guy, I endured the pain for a week hoping it would go away, naturally it didn’t. On September 1st, constant pain in the left testicle began to form as though I was just kicked in that region. I went to medical at 3pm that day and was seen by the ship’s Chief Medical Officer (a Captain at that) and the lieutenant surgeon. Both explained to me that the growing mass was very concerning; however they could only observe to an extent by means of exterior feeling. I was told that since we (the ship) were three days off the coast of Manila, Philippines that I would be flown from Clark AFB back to homeport in Yokosuka, Japan for an ultrasound.
On Sunday, September 5th at 0300, while five miles anchored off the coast of Manila would be the last time I would perform the duties I joined and trained for, until arriving on the USS Boxer January 16, 2013. With my sea-bag half full and backpack of electronics, I boarded the liberty boat at 0600 that would take me to the mainland. I was only on the mainland for five hours before the plane took off from Clark AFB for Japan.
The dreadful week began on Tuesday, the 7th consisting of blood tests and an ultrasound, which is cold by the way. The effects of the temperature in that area made it difficult for the technician to retrieve quality images. Once that was complete and I got warm again I headed over to my doctors office to see what she learned. No sooner than five minutes of sitting down did she tell me that I would be going in for surgery in 20 hours for a unilateral orchiectomy (removal of my left testicle) at 0800 the next morning. She didn’t know what the mass growing was, but they would remove it anyway just to be safe. Naturally I was defensive and asked if they couldn’t cut me open and take a sample. The doc said, “That may induce spreading, thus it is safer to remove it now” (Easy for you to say). According to my blood labs my hCG level was 15. The hCG is a hormone mainly produced by females during pregnancy. Male levels range on average 1-5.
I went into surgery 0830 Wednesday morning and didn’t wake up until 2pm in a world of pain. Morphine via IV only does so much. Plus, I felt half the man I use to be, as though I were missing something. I was confided to bed rest in the hospital for 24hrs before I could leave. Once discharged from the hospital, I was allowed 7 days convalescent leave and a big bottle of 800mg Percocet’s (2 every 4hrs). I didn’t see my doctor until Tuesday the 21st for more blood tests and a CT-scan. My hCG level had now risen to 25, while the CT-scan proved signs of spreading through my lymph node system. The lymphnotic system is what makes cancer so deadly. The system runs through all the major areas of your body, giving the cancer a highway to spread. Normal lymph nodes should be 1-2mm in diameter. Mine were 1.2 cm and 2.3cm. I was informed that day that my testicle was sent to Balboa Hospital in San Diego for a biopsy. It was then my doctor quietly broke the news to me and told me I was diagnosed with Embryonic Testicular Cancer. In a way, I was relieved to learn that it was something serious than not, for they already took my testicle as it was. It was good to know I lost it for a reason, not on a whim. So here I am in Japan, 21 years old, after only a year in the Navy, and I get stuck with the rarest of the rarest cancers, which happens to be the fastest spreading. Testicular Cancer alone is the most curable if you look on the bright side. I broke the news to my parents. My father stayed strong as he should. My mother on the other hand was a wreck. Five days later on Sept 26th at 12:07pm I landed in San Diego International and headed for home to surprise my parents. My mother broke down once I stepped foot in the door.
The doctor appointments at Balboa Hospital began the very next day discussing my case to the Urologist and Oncologist. The busy day ended with a blood test and checking into Med-Hold. My hCG level jumped to 37. The following week was filled with check-in paper work, other small appointments and three visits to the Fertility Center of California of San Diego. It was at that time the seriousness of my condition set in. I was only 21 at the time but I knew then someday I would want to be a father. Having cancer was jeopardizing my opportunity to do so. My doctor explained to me that chemotherapy would possibly cause me to be infertile for one year, with a 50% chance of being infertile forever. She recommended that it would be a good idea to make a “deposit” at the “bank”. The interest rate was low but oh well. Let me tell you, never have I done anything so embarrassing before in my life. The first time I went was in my service uniform. I was definitely not dressed for the occasion. Of course, only females worked there except one male doctor. They know what you are doing behind that door, in the leather seat with the sanitation cover, flat screen TV with a DVD or choice of magazines. In the back of my head I think, “Do I rush or take my time? Come out in 5 minutes they may think I’m quick on the draw. Take too long and they may start to worry.” Anyway, I did not enjoy those three visits. However on the plus side, after my last “deposit” a doctor spoke to me about my samples and was pleased to tell me that average sperm count is 20 million parts/ml for the avg. male. However based on my condition I was cranking out 16 million parts/ml. I got me some Navy SEALS. My doctor urged me to quit smoking during chemo. I said “Why? I don’t have lung cancer. I have Testicular Cancer. You should tell me to quit sex with that logic.” She did not find my logic amusing as I did.
The first cycle of chemo did not begin until October 18, 2010- Oct 22, 2010 (hCG level = about 61). Each cycle was five days in a row, four hours long each day. The morning of the 18th began at 0800 as I went into surgery for the placement of what is called a Power Injection Port. It’s a device that sits under the skin just below my right collar bone. It’s about the size of a penny with a gel like top and cord that run to my neck and into my jugular vein. This is so that the chemo may be administered easier and less painful rather than a daily prick of an IV. Once I took my anti-nausea medications (worth over $500) they hooked me up with a 2mm needle that the nurses taped over and I kept it in for the week of the cycle. At the end of the needle is a tube just like a normal IV would be with an end to screw in another line for either 1000/ml saline w/ 0.9% potassium for pre-hydration, 1000/ml of chemo, and another 1000/ml saline with 0.9% potassium for post-hydration. The chemo I was administered was called BEP (bleomycin, etoposide, and cisplatin). All three drugs have different side effects however only bleomycin, etoposide cause infertility. Chemo is a drug that kills fast growing cells. This includes the cancer itself, but also hair and blood cells. The red cells carry oxygen throughout the body, which made me more tired. White blood cells are my immune system, the lesser the easier it is to get sick. The platelets help make scabs and prevent bruising. By the end of the day of chemo I went straight to bed and usually didn’t wake up until midnight or so. I’d make a fast-food run to Jack-in-the-Box and order 10 tacos then head over to 7-Eleven for a double gulp. I still had my appetite God bless me and managed to gain 60 pounds during the course of my year in Med-Hold. Something I am still working to get off. It mother found it hard once my hair began falling out after only the first week of chemo and on her birthday too. Cycle 2 was suppose to begin on November 1st, however my hands broke out and formed hard, painful calluses and blemishes on my wrist that look like scars. Cycle 2 was postponed one week. I also had another blood test to check my hCG level and the results showed that in one cycle I dropped all the way down to level 3. I finished chemotherapy on December 31, 2010.
The January 2011 CT-scans reviled two lymph-nodes 6mm wide in my aorta track and a 5mm one in my lung. Normally lymph-nodes should be 1-2mm and when I still had the tumor back in September they were 1.2cm. So, they were not big enough to create a scare however something had to be done with them. For those who do not know, (I didn’t at first) the aorta is by Wikipedia definition (at times, a credible source) the largest artery in the body, originating from the left ventricle of the heart and extending down to the abdomen, where it branches off into two smaller arteries. After reviewing my CT-scans, my Oncologist said that she was fine with “the observation stage” meaning CT-scans every 2-3 months to track if there was any growth of the swollen lymph-nodes. She would present my case to the Tumor Board for their opinion as well. In the meantime, she recommended I get a second opinion from the Head Urologist and learn what he thinks.
Two weeks later, mid-February, I met with the urologist and his recommendation was to perform a Retroperitoneal Lymph Node Dissection (RPLND) to remove the two lymph-nodes in my aortic track and leave the one in my lung only due to the fact that the surgery to do that is more of a risk than the actual lymph-node itself. His reasoning behind the surgery was that, one, could possibly turn into a teratoma cyst later in life (A teratoma is an encapsulated tumor with tissue or organ components resembling normal derivatives of all three germ layers). Or 2, be benign, or 3 could just be scar tissue. I thanked him for looking at my case and went on my way; right back to my Oncologist. I told her he recommended the surgery and she was quite surprised. She said it’s up to me now, obverse or surgery. I asked her when is the soonest I may have a second CT-scan to see any possible growth and she said two months from the last one. So I had a second CT-scan in mid-March and the results turned out to be the same as the last one. Neither growth nor shrinkage. I took the next weeks researching the surgery, learning the risks involved, talking with friends and family members for their insight on what I should do. I came to the conclusion of going through with the surgery for numerous reasons. One being that it would be a greater toll on my body if I was to wait until age 30 or 40. Being 22 I would heal faster and quicker. Secondly, so that I may end this chapter of my life and press forward with my career which has been on hold since September 5th. So I called it preventative maintenance.
The original surgery date was May 27 at 0600. However do to hungry issues and not eating for 18 hours per doctors orders. I indulged in a Slim-Fast the morning of, thinking liquid was ok. The surgery was postponed until June 9th. This worked out well because my advancement ceremony to E5 was on the 2nd and attending it would have been a painful challenge 6 days after surgery. The morning of the 9th began with checking in a 0900 however not going into the OR until 1pm. It took the doctors a good hour just to get my epidural set up, which also took them two tries. The surgery lasted five hours and I was placed in ICU. It was a complete success. I didn’t fully wake up until about 9:45pm with my girlfriend Nicole at the time (Married November 11, 2011) by my side in the room. Turns out the epidural worked on only the right half of the incision. The incision began one inch below my sternum and extends two inches past my waist totaling 10.5 inches long and 66 staples holding me together. The next day, Friday, the doctors wanted me out of bed and sitting up in a chair for half the day. Then once they moved me to the wardrooms, they insist I walk around as well. Using a walker, my IV machine and catheter bag behind me, two orderlies and Nikki, I made one lap around the desk area at about 2mph. Back in my bed they finally left me a alone for awhile. The worse part of it was the pain meds weren’t working one bit and I was on a “no nothing” diet for the first 2 days. Saturday I was finally allowed 30ml of water/hr, the same as those plastic cups on the top of NyQuil bottles.
According to the doctors I was making great progress and they were very surprised how fast I was healing. I made it to 3 laps around the desk that day. Sunday morning came with a treat, liquid diet stage. Never has Jell-o tasted so good. Everything else was questionable. They removed my catheter around 1pm and told me I must pee 300cc in 6 hours on my own or they would put the catheter back in. So I guess you could say I had some motivation. By 715pm I was only at 250cc and finally by 8pm got up to 500cc. I went another 1400cc in 4 hours. Sunday night I was able to eat “real” hospital food again. Monday I was discharged from the hospital with the doctors pleased to see how quickly I was recovering. For pain, I was given 325mg Tylenol, 5mg and 10mg Oxycontin. None of it worked effectively the first week and a half. I had my staples removed the following Monday and continued to recover in Huntington Beach, CA until July 14, when I had to report back to Active Duty. Five month later after recovering from this major surgery, I received my first PFA failure due to BCA. The doctor claimed that even though I had a rare extensive surgery that required cutting open my abdominal muscles 10.5 inches long and removing my intestines to reach the lymph nodes that needed to be taken out, I should “Just lower my calorie intake.”
After a year had passed since I completed chemotherapy, the fertility clinic wanted me to begin coming in again to test samples and view the affects it had on me. I went in February 2012 for a check-up. Just as my doctor told me before I began chemotherapy 16 months prior, my count was less than 100,000 per/ml. The doctor at the clinic said this was normal. The real test is once two years have passed since my last day of chemotherapy. From there, what every my count is in two years is most likely what my count will be for the rest of my life. A few months later I went back for another check up on July 17, 2012. My count only rose to 2.4 million per/ml. It was not looking hopeful. My fears came true on March 6, 2013, two years and three months since my last chemotherapy treatment. My count was only at a measly 3.2 million per/ml. In the matter of 25 months, my count dropped from 16 million to 3.2 million. My odds of having children have greatly decreased. To further worsen those odds, my wife is currently on dialysis due to kidney failure. There have been no known cases of any woman on dialysis to carry a child to full term. My wife and I now play the waiting game for the next 3-5 years until she can receive a kidney and before we can start a family of our own.
Every day for the rest of my life, if I think I’m having a crappy day, I think of where I came from and what I have to be thankful for. No day is worst than a day of chemo thinking you will never get better. But I did get better. I was given a second chance. I survived and was able to continue my Naval career. This is why I always live on the positive side of life. I am overjoyed and proud to say that 10 months, 2 surgeries, and 20 days of chemotherapy later I have beaten Testicular Cancer.
7 Year Testicular Cancer Survivor
I was diagnosed with TC right after New Years, Jan. 2006. I was 53 at the time. So far, I have been clear of any cancer and happy to be alive! Here is my story…
I had been involved in a martial arts discipline for several years, as well as weight lifting, when I first noticed the symptoms but was unaware of what they were. It started off as groin pain. I went to see my family doctor and after a series of questions regarding my lifestyle, he suspected that it was a pulled muscle in my groin area.
Medication did not help and the pain persisted. About two weeks later, while showering, I noticed that my right testicle was swollen to about the size of a golf ball! I immediately told my wife, who in turn called an emergency room thinking that it was testicular torsion? She had studied to be a nurse and still remains quite interested in the medical field.
Given that it was a Saturday night, we were told to see our family doctor as soon as possible. On Monday morning I called the doctor and was brought in immediately. He took one look and sent me off for an ultrasound and an appointment with an urologist. As I was waiting for the ultrasound results, the urologist was calling asking where I was. My wife and I finally got to the urologist and after looking at my testicles and ultrasound, the doctor said, ”you have cancer”, that was all I heard. I literally blocked everything else out!
My wife told me that I was scheduled for surgery to remove the testicle on Thursday. Surgery was fine, no complications. Later I had a follow up visit with an oncologist and was told that he suspected that the cancer might have spread into my lymph nodes.
I was told that I had two options: first was to have major surgery, a RPLND, to do a biopsy to determine whether or not the cancer spread or second, have monthly medical tests and visits with the oncologist for a year to see if the cancer had spread.
My wife told me that I was going for the surgery! Mind you, this is a serious invasive surgery with the potential for some serious life altering side effects! (My wife still doesn’t understand why I call her ”boss”)
I was in the hospital for 5-6 days, have a zipper scar from my chest bone to below my navel, and I was out of work for 3 months. I had a great surgeon, Dept. Head at U. of Penn Hospital, Philadelphia, PA, and there were no complications.
Well, they told me, ”nope, didn’t find anything, the cancer didn’t spread” and my response was ”gee, thanks for the scar! Always wanted one like this! (Just kidding)”
I eventually returned to my martial arts training about 4 months after surgery, on a limited level and full training a month after that.
I also ride a motorcycle, a large, heavy touring bike. About 5 months after the RPLND surgery I got back on the bike and started riding again, short hops here and there, just to feel normal again. My riding buddies asked if I was okay riding given that I just went through a bout of testicular cancer, never mind the tenderness in the abdominal area from surgery. I told them ”yep, I still ride, but I had to readjust after having lost my right testicle to cancer, found that the bike tended to lean to the left!
It’s been 7 years since having been diagnosed and treated and I am glad to say that everything is fine! My wife, ”the boss” has been very supportive throughout the entire episode of cancer, and a great wife overall. What my wife has done for me during this period was nothing short of pure love! There were some issues/complications during recovery at the hospital and my wife made sure I got the best of care, actually going toe to toe with the hospital staff! At home, there was no need for a visiting nurse, my wife was there taking care of everything! She took time off from work, and when she did return to work, she would come home during lunch to check up on me. I’m happy to say that we are coming up on our 28th anniversary this fall, and I can’t see life without her!
“Memoirs of a 30 Year Cancer Survivor”
We all have a story to tell. A good story has a beginning, middle and an ending. My story has many beginnings and thankfully no ending as yet. My story is of survival, rebirth, finding my voice and finally healing.
Just a few years after Richard Nixon declared war on cancer, I heard those fateful words, “you have cancer”. I was 20 years old and had been married 11 months, 3 weeks and 2 days. I was trying to find my way in the world and looking to start a life with my young bride.
It was June 1975 and I had some nagging groin pain which I attributed to working in construction and a probable hernia. I went to the emergency room to get checked out but they could not find anything and recommended I see an urologist. I for the most part ignored the suggestion as I really did not want to see a doctor but my wife kept pushing me to go. Finally in early August, she made an appointment for me and simply told me to go. That was August 6th 1975 at 3:30 pm. After the usual 20 questions and extremely awkward “drop your pants and let’s have a look”, the doctor looked me in the eye and said “you definitely have a problem Ron”. My heart stopped beating as panic spread through my every fiber.
I was admitted to the hospital the following day and had surgery the next day. A right radical inguinal orchiectomy was performed and later that day I was given the grim news. The diagnosis was “pure embryonal carcinoma with vascular invasion”. I had testicular cancer, a virtual death sentence in those days.
I had not been sick since I was a child and had no idea how to react or deal with the news. The hospital stay was a nightmare as I felt my life slipping away and so totally out of control. I felt like a cornered wild animal scratching and snarling in feeble attempts to regain some level of control of my life and dignity.
I went home after a few days and spent the rest of the week regaining my strength. That week was our first wedding anniversary and for a surprise anniversary gift my wife gave me an 8 track player (yes definitely dating us) and a John Denver tape. I excitedly set up the system and plugged in the tape. The very first song to play on that system was “Lady”. For those of you that are unfamiliar with the song, it says “did you think our time together was all gone” and goes on to say “our time has just begun”. How prophetic that truly was!
After a week, the doctor’s office called and said I needed to come back in and discuss my prognosis and future treatments. I agreed rather expecting it would be “take two of these and call me in the morning”. Apparently my urologist didn’t quite see it the same way. He sat me down and proceeded to tell me I had a 50% chance of living 2 years and a less than 10% chance of seeing my 25th birthday. He told me he knew of ONE patient with my pathology that lived!
Needless to say my head was spinning, I could hardly breath and my short life passed before my eyes. I went home to my wife having no idea what the future would hold or even if there was a future. I don’t think I even told my wife the specifics the doctor had conveyed to me, just that the prognosis was not good and that he wanted me to go to a major cancer center at either Dartmouth or the Mayo Clinic.
Somehow that evening I became a survivor determined to beat the odds. In fact I became so focused on surviving and having a future I never again even considered I would not live! Perhaps it was inner strength or denial or naïve or a combination of all of it, but I somehow found the strength to deal with the coming months of surgery, chemo, poking and prodding and maintain some level of sanity and will to live!
The same focus, determination and denial caused me to shut my story inside. I told no one. I had a dear friend of more than 20 years that did not know my cancer story. Cancer was not something anyone talked about then and especially a young man with a sexual component or connotation! It wasn’t until I faced the 30th anniversary of my diagnosis and my 50th birthday that I finally began to think back about what I had been through all those years ago. I contacted the doctors, oncologist and hospitals and asked for copies of my medical records and proceeded to sit down and read them. It brought back so many emotions I had locked away deep inside. For the first time I really saw the fear, panic, shame, heartache and the pain I locked away. The scars both physical and emotional.
I decided to write my story as a way of working through the emotions, a catharsis of sorts. As I did this I began to realize I had not only locked away the specific emotions related to my illness, I had locked away most of my emotions in total. For so many years I had feared that allowing myself to feel any kind of emotion would open Pandora’s box and allow all the pain and hurt and fear to escape. I had in essence lost myself.
Through this process I began researching all I had endured, the surgeries, the chemo, the statistics and slowly became more aware of the greater cancer community of which I had hidden myself away from. I read about so many other survivors including Lance Armstrong and learned of the first LiveStrong Summit is 2006. I had never interacted with another cancer survivor in the 30+ years since my diagnosis. There were no support groups then. The internet was in its infancy and available only to academia and so I was learning for the first time I was not alone.
I applied to the LAF Summit fully expecting to be declined but low and behold I was accepted. My wife (of over 30 years at that point) told me I needed to go there alone. I needed to face my fears and to once and for all learn I was never alone. Not then, not now.
To say that that experience changed my life is one of those huge understatements in life!
I had been miraculously cured 30+ years before, but it was not until I began to interact with other survivors and to share my story that I finally began to heal………….
Survivorship is not about living or dying. It is not about the physical being. It is a state of mind. An acceptance of one’s situation and a determination to live each day to the fullest extent possible no matter how many or few we have ahead.
Survivorship starts the day of diagnosis and evolves and adapts as our situations change. It may mean one thing the day after diagnosis and yet something else 30+ years later.
It took me over 30 years to heal and make peace with my cancer and that only came when I began share my story.
People have told me I have an inspirational story but honestly I only did what I had to do and what allowed me to get through some of the most horrible days. I believe we all have our crosses to bear and that although my experience was no fun, I also know so many suffer so much more than I ever did!
I also know we have no idea how much we can truly handle until we are forced to do so! The strength of the human spirit is truly remarkable and resilient. I said in the beginning my story had many beginnings as I feel I have been granted so many rebirths in my life. I was reborn when I came out the other side of cancer and yet again when I found my voice and finally began to heal through getting involved with other survivors and advocacy.
I did in fact write my survival story which started strictly as a cathartic process intended only for me to help me finally heal. But at the urging of those few individuals I shared it with, it has now been published as a book, “Memoirs of a 30 Year Cancer Survivor”.
I can honestly say that the “fear of recurrence” never really goes completely away, but we do learn to deal with and manage it. I also know today, that if I ever have to face it again, I know I can endure and have found inner peace.
I can only hope and pray that my sharing my story helps someone to know there is indeed life after cancer. There is hope. You are not alone!!
“One Ball and Two Strikes”
“Ouch…Lynn you can’t jump on my lap like that, I’m telling you it hurts.” That was my reaction that Saturday evening, in late December of 2007, as my wife innocently sat on my lap to put her arm around my neck and give me a kiss. In female language that pain and reaction translated to “You are trying to say that I’m fat, aren’t you?” I still to this day love to hold that over the head of the greatest wife in the world.
That pain proved to be a stage II non-seminoma tumor engulfing my left testicle. The germ cell tumor contained several of the most aggressive types of testicular cancer cells, including choriocarcinoma, embryonal carcinoma and yolk sac cells. According to the pathology report, the testicle and tumor was 99 grams, the size of a large egg and from the time of the ultrasound to the orchiectomy, it had doubled in size in those 6 days. This was clear evidence of how aggressive and serious this cancer can be. Luckily, I studied Health Education at Northern Illinois University and knew how important self-examination was. I was fortunate to catch this extremely early and that was the foundation of my positive thinking.
Having a doctor tell you that you have cancer is one thing but having him tell you that he is going to remove one of your testicles was truly the biggest loss of the day! I could deal with the cancer but to take one of my boys??? “SHIT”…I thought to myself, not me, I was only 27. Now I’m going to be like ESPN analyst John Kruk. Damn, now I’m like 3rd baseman Mike Lowell, the infamous Lance Armstrong or Darren Jackson, a broadcaster of the White Sox. CRAP…. Now I have to think ahead of any situation that might open a window for someone else to make a joke. Which reminds me. Here a few things you must keep in mind when you are around me or another testicular cancer survivor.
1-If you are ever golfing with me and I slice a drive into the rough…Never ask, Hey Hogrefe you know where your ball went?
2-When I hit my second shot on that first hole and lay my 8 iron on the green 10 feet from the hole…Never yell from across the fairway…“ HOGREFE…NICE BALL”
3-When you are sitting at a poker table with me and I’m holding the Ace, King of Hearts and I flop a flush…Never say when the hand is complete… “Hogrefe flopped the nuts”
4-Never when you coach a football game with me…Come into the halftime angry and tell your team to play balls out in the 2nd half….
5-When I am watching a baseball game with you and I ask the count…Don’t be a smartass and reply two strikes and one ball…
All joking aside, this was some serious shit. After that day in January, I had successful surgery to remove the tumor and testicle. The problem was, the two tumor markers in my blood hadn’t fully returned to normal. In other words, somewhere in my body there were still some looming cancer cells. The plan was to monitor the levels for the next 6 weeks to see if the counts would return to normal. I still remember giving blood often on Thursdays for those six weeks and then eagerly calling the office the following Monday to hear the results. Unfortunately, the news on those Mondays was never the news we wanted to hear. Finally, when the 6th week approached, Lynn, the Dr. and I knew it was time to find an Oncologist.
Now it hit me. I was scheduling chemotherapy and looking at the calendar of when to start. My parents had already lost a son to cancer in 1979, the year before I was born, when my 5-year-old brother Jeff lost his battle with Leukemia. I was determined to give my family a victory this time around.
I was excited to get this over with, fight it, beat it and return to normal. And that’s exactly what we did! I underwent 3 rounds of BEP chemotherapy from February-April 2008. As any survivor knows, there were ups and downs during that stretch of time. I have had the opportunity to speak/mentor some other guys that are embarking on the same journey that I traveled. My advice is simple. STAY POSITIVE, roll with the punches, AND FIGHT!
Things slowly began to return to normal that first year. Although my hair came back blonde and curly, it too returned to normal over time! Nearly two years to the day after my last chemo treatment, Lynn and I returned to the same hospital. This time we were welcoming our first daughter Madelyn on April 21st, 2010. PROOF… That all you need is one!
It was on my three year CT scan in April of 2010 that we encountered another hiccup. I was informed that my CT scan showed two enlarged lymph nodes. As it turned out, there was a type of cell in the original testicular cancer that doesn’t respond to chemotherapy. This cell is called teratoma. Now teratomas are good in the sense that they do not metastasize, in other words they stay to themselves. On the other hand, they continue to grow, could turn into other types of cancer and need to be removed. The lymph nodes were located adjacent to my aorta and near my spine and would require obvious invasive surgery to be removed. Lynn and I started the journey to find the right doctor to perform the Retroperitoneal Lymph Node Dissection (RPLND).
Our first trip was to Indiana University. We all as testicular cancer survivors should be proud of the facility that is located there in Bloomington. It was there I was able to meet Doctor Lawrence Einhorn, one of the men responsible for creating the chemo concoction that helped save many of our lives. What a powerful moment it was to say, “thank you” to a man responsible for helping save your life. This was a fantastic place but I chose, however, to have the nerve sparing procedure performed closer to home at the University of Chicago by Doctor Scott Eggener. I can’t say enough about him and the staff there at the University of Chicago. I was not prepared for how painful this surgery proved to be. But like chemotherapy, I attacked it, beat it and returned to normal over time.
There are so many people to give thanks for all the nice gestures over the past 4 years. My loving wife and family, my caring friends, my co-workers and second family at Fremd High school, my doctors and nurses, my instructor at Northern Illinois University who demanded we self-exam, the list goes on and on. The people who I feel deserve the most thanks are those that have donated to research over the years. With the help of these selfless people, our road to recovery was so much easier than those who went through the same thing years before I did. It is that reason that I feel the need to pay it forward. This year, the 4th annual “1 Ball Pub Crawl” will be looking to eclipse $45,000 raised for cancer research and awareness. We always love to have fellow 1 ball survivors and their friends to share in the fun. Mark your calendars for Sat June 23rd 2012 in Chicago IL.
Join the fight, help raise money and raise awareness in the fight of all types of cancer!!!!
“Cancer may take our hair and our balls, but it can’t take our sense of humor or our spirit” -Jason Hogrefe
Third Annual One Ball Pub Crawl 2011
“Looking Back on Testicular Cancer”
In the Spring of 2001 I was a healthy 44 year old racing to keep up with a 2 1/2 year old adopted daughter. When my right testicle became swollen — it happened very fast, in just a few days — I decided that my daughter Chloe must have kicked me in the groin when I was trying to strap her into her carseat.
When my testicle remained swollen after 2 weeks I went to see my doctor who immediately referred me for an ultrasound exam. I could tell by the serious attitude of the ultrasound technician that something was wrong. In a matter of days I was scheduled for an orchiectomy — surgery to remove a testicle — which was performed by a no-nonsense urologist named Dr. Purohit.
Just before I was wheeled into surgery, I was visited by an old friend who had a twisted sense of humor. I looked up from the gurney and said to him “Thanks so much for being here on the day that my right ball is being cut off.” His reply was “I wouldn’t have missed it for anything.”
After surgery, I received a pathology report that told that my testicular tumor of pure seminoma had been removed, and that I had “possible vascular invasion.” In other words, there was a chance that cancer might have made its way through my bloodstream to other areas of my body. Because I am an eternal optimist, I went to my radiation consultation and told the radiologist that I wanted to pursue a path of “Surveillance” and skip radiation treatments. My hope was that cancer cells hadn’t invaded my system.
Choosing surveillance had 2 consequences later down the road. The first was that a cancerous tumor did indeed develop in a groinal lymph node. The second was that when I applied for life insurance some years later I had a black mark on my record. “Patient refused treatment,” is what the doctor had written. I was surprised by that, as surveillance is often a reasonable option after surgery, even though it didn’t work out in my case.
My back began to hurt in the Fall, I avoided seeing the doctor until December, hoping that a sore back was just a sore back. When I did visit the doctor, who really should have been asking me to come in every few months for surveillance exams, he ordered an immediate CT scan. The day after Christmas he called me on my cellphone and told me “You need chemotherapy.” When the call came my wife and I were on the road heading to see relatives in Seattle, but we made a quick return to Southern California.
I was very lucky to have a large bank of sick days available to me at the community college where I teach. When I called my Dean to tell him that I would miss a semester, he was very supportive. I was touched when the President of the college called me at home and told me “Please let me know if there is anything I can do for you.” I also had a good health plan that covered my treatment, and did not suffer financially. As I have learned what so many go through in financial terms when fighting cancer, I realize how tremendously fortunate I was in that respect.
Chemotherapy wasn’t as bad as I might have expected — at first — and I was given some help with nausea control. Still, as the cycles progressed I looked older and felt weaker. Unlike many patients who lose weight and appetite, I decided to go for “comfort eating” and actually put on weight. I had good days and bad days, and coped with the boredom and lack of energy by listening to a lot of music and reading every magazine in sight.
After the second cycle of chemotherapy, there were some very dramatic developments. The most shocking was that my wife of 9 years asked for a divorce. She had decided she needed to return to school and complete her degree, and having a very sick husband was not something she handled well. Here is my perspective looking back: cancer is an earthquake and if anything in your life is shaky, cancer will break it loose. It certainly shook loose a weak marriage.
To those of you who have supportive wives, girlfriends or partners helping you deal with cancer, tell them from me that they are extraordinary.
A few days after my wife left there were 2 more dramatic developments. My doctors told me that I had “remission” and that my cancer was responding beautifully to chemo and was almost entirely gone. On that same day my brother in law Gary was informed of the death of his sister who had been fighting a brain tumor. One of the things that I as a cancer survivor will always be haunted by is the randomness of mortality. Why was I going to live, when another had to die?
During my last 2 cycles of chemo friends and family really came through for me, and I marked off the days on my calendar. Sometimes I felt OK, other times I felt horrible. One day I decided to walk to Carl’s Jr, about 2 blocks from my house, for a milk shake. The walk there went OK, but I sat in the restaurant for 2 hours before attempting to walk home. I had completely exhausted myself just going there.
By my last treatment I was anemic, but cancer free. To celebrate the end of my last cycle my parents took me to Mimi’s Cafe for a nice dinner. I enjoyed the meal, and then raced to the restroom to have one more bout of chemo vomiting. It was so awful that it was actually funny.
Easter 2002: With my daughter Chloe a few weeks after finishing chemo
When my health began to return, I moved from the home I had shared with my wife to an apartment and contemplated my future. While my hair was still growing back in I took a photo of myself and put up a few internet personals. I don’t know why I was so confident or brave, but I did not want to raise Chloe alone, and was ready to move forward with my life.
Within 6 months after finishing chemo, I met Linda, a news editor, and we began to date seriously. Before we married I told her not to expect to have children with me as I was pretty sure that chemo had ruined my fertility. That turned out to be quite wrong. She became pregnant very easily, and we now have 2 wonderful daughters together.
It has been nearly 10 years since my cancer first appeared, and I can honestly tell people who ask that cancer had many positive aspects. “Even the bad days are good days” is a saying I use often, thinking back about the difficulty of chemo, and the fear of illness. I have more empathy for people who are dealing with illness, and am probably a bit more “real” as a person in general.
The message I want to give to those dealing with testicular cancer is this: deal with it, prepare to get through it, and plan on enjoying life tremendously when it is over. You can do it.