Welcome Home Dad – Francis O’Connell
Frankie O’Connell passed away in April 2004 after a two year battle with testicular cancer. With his passing he left behind 3 children, Jaclyn, Frankie and Ryan. Nine years later, as a freshman in college, Frankie Jr., 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 Jr.’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.
#tscsm hashtag TeSticular Cancer Social Media
The use of hashtags continues to grow across many platforms and can even be funny and entertaining at times. However, the use of hashtags for medical conditions, such as testicular cancer, has not been uniformly developed and this provides an opportunity for improvement.
In order to be useful, hashtags should be unique, identifiable and short. Unfortunately, on platforms such as Twitter #testicularcancer is just too many characters and the use of #balls or #nuts is too generic to provide much usefulness for someone searching for testicular cancer information. As a matter of fact, if you are looking for cancer information on Twitter a search for #cancer will result in a plethora of topics and you will end up reading more posts about astrology than you will about clinical or support topics related to cancer.
Earlier this year, realizing these deficiencies, Dr. Matthew Katz proposed a hashtag folksonomy for cancer communities. After some collaboration and refinement they developed a systematic approach for site-specific cancers, based off the #bcsm hashtag that has been used for several years for breast cancer.
We have been communicating with Dr. Katz over the last few months and fully support his ontological system, which is also being accepted by other major institutions such as ASCO, MD Anderson and the American Urological Association. We hope that you will join us in starting to use #tscsm when making posts related to testicular cancer. The hashtag comes from testicular cancer social media (#tscsm) and will allow individuals to quickly locate information about testicular cancer without having to wade through the plethora of other posts that are unrelated.
The cancer tag ontology is also summarized on Symplur and will allow organizations and patients to connect based on the unique tags.
Thanks Dr. Katz, et al. for your hard work to make cancer information more accessible and useful to patients, clinicians and organizations on social media platforms.
#tscsm for Now,
Make Your Holiday Shopping Matter by Shopping for Good.
Well, welcome to Goodshop, an online shopping mall that puts an end to closing times and long lines. By following the links on this blog, every time you make a purchase the Testicular Cancer Society will receive a donation from the participating store. Just click on GoodShop once you reach the main page for onetime purchases or sign up and track your impact throughout the year.
Please help supporting us this Holiday Season and throughout the rest of the year by making your online purchases via GoodShop. The retailers even offer a ton of coupons to help you save a few dollars as well.
Thanks for Your Support,
In 2010 we wrote a blog post titled Cancer Research or Halloween and since then not much has changed.
To get our fright on, it is estimated that Americans will spend between $6.9 billion and $8 billion on Halloween festivities this year. U.S. News and World Report reports that the average participant will spend $80 which is up from the $72 spent on Halloween for 2012.
To put these large numbers into perspective the National Institutes of Health (NIH) is expected to only spend $5.6 billion on cancer research in 2013 via the National Cancer Institute (NCI).
Does that mean that cancer isn’t scary enough so we have to supplement the frights with Halloween spending?
We think it shows the financial power of the public.
The federal government uses our tax dollars to fund the NIH and NCI but the best that they can come up with is $5.6 billion dollars. Note that this is in spite of the Obama-Biden Plan to Combat Cancer in which they promised in September of 2008 to double the funding for cancer research within 5 years. We have yet to find any proof that the budget has doubled.
If all the Americans that participated in Halloween were to give the average of $80 a year to fund cancer research then we would be able to double the funding provided by the NIH. Our point being is that to many people $80 a year or $6.67 a month isn’t an enormous amount of money. In fact, most people would feel that even if they gave $10 a month to cancer research or to a charity that helps reduce the burden of cancer that it wouldn’t amount to much.
In fact, that is not the case. Giving $10 a month and encouraging your ghoulish friends to do the same can add up and make a huge different. Every little bit helps but don’t skip out on the Halloween candy to make a donation towards cancer because we don’t want the American Dental Association to get angry at us for reducing the rate of caries.
Clinical trials are the tools that are used to improve our ability to treat cancer.
Many people think of clinical trials as an all or nothing principle that dates back to the early days of placebo-controlled clinical trials. Before there were effective treatments for a disease they would conduct trials where patients were given a drug or a sugar pill to see if the drug performed.
In today’s age, it is no longer ethical to use placebo controlled trials, especially when we have proven treatments, so there really are no longer any of these sugar pills. Clinical trials are often used to compare new treatments to the best that are currently available. By comparing these promising new treatments we can help improve our current “gold standards.”
In order to find a clinical trial we used to have to rely on the knowledge of our treating physician. Then the National Institute of Health designed a clinical trial registry but this registry was designed more for the clinical trials to have a place for public posting and not really a place for patients to find trials to meet their needs.
Now we have CureLauncher, which was co-founded by two-time testicular cancer survivor David Fuehrer. CureLauncher has “translated” the clinical trials into an easier to understand format. They also use Relationship Managers to ensure that they are there for your first and that they are focusing on finding clinical trials that match your unique needs and goals. Instead of having to rely on which trial is at the large local hospital we now have access to CureLauncher and their list of All clinical trials.
[Note: You may not see Testicular Cancer in the condition selector on their home page but they DO have testicular cancer trials available so simply give them a call at (800) 488-6632]
Thanks for taking a closer look at clinical trials.
Can you speak about sexuality issues associated with being a young adult with cancer?
We have been contacted on behalf of an editor who is composing an eBook for Adolescent and Young Adult (AYA) cancer patients to help address sexuality issues that they face after their cancer diagnosis. Your experience can help pave the road for those future survivors so your input is greatly appreciated.
Papers can be 500-1000 words in length. The format is to identify the problem/issue and provide take-away tips or advice for readers, based on the writer’s personal experience.
- body image (loss of body parts ie. breast, testicle, hair, etc)
- changes to anatomy and the physiology of sexual functioning
- issues specific to LGBT survivors
- strategies for dealing with scars and other visible reminders of cancer (hair loss, weight gain/loss)
- information about meeting potential partners, dating, hooking up, maintaining established relationships
- tips for disclosure about cancer (when and how to disclose to a potential partner)
If you would like to participate, please contact Mike Craycraft in confidence and we will put you in contact with the editor.
Thanks for Your Consideration,
Can I Get Life Insurance After Testicular Cancer Diagnosis?
After being diagnosed with testicular cancer many of us assume that being able to secure life insurance is impossible. We fear that no one will insure us or that it will be too expensive. However, this is not necessarily the case.
The SAMFund just released a incredible new webinar titled The SAMFund: Life Insurance and Cancer Survivors (note that this link goes to a pre-webinar survey and then will redirect to the webinar for viewing). Take time to view this if you are looking for insurance.
Presenter Ted Mageau, from the Main Street Planing Group, details inside knowledge of the life insurance industry. He points out that brokers with multiple carries and experience with cancer survivors may be your bet. He gives simple explanations and a list things to do and not do.
If you need to obtain life insurance after a testicular cancer diagnosis then take the time to watch this webinar. Especially with early stage seminoma, insurance may be available right after treatments.
We all want to protect our families future and life insurance is not impossible to obtain.
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.