Watch Aaron Louison through his 9 weeks of chemotherapy and then read his reaction about his first post chemotherapy scans.
My doctors were pessimistic about my first follow-up scan after 9 weeks of chemo. Because my testicular tumor was not pure carcinoma and teratoma was present, it was quite clear to them that chemotherapy would not be the only solution to my cancer.
The last thing I wanted to do after going through chemo was to have an RPLND (Retroperitoneal lymph node dissection), short for a maximally invasive surgery, which would suck. At least on my worst days of chemo I could walk and I wasn’t in pain. From what I heard post-RPLND, the pain would be so severe that I wouldn’t be able to walk for a few days, I’d be in the hospital for at least a week, I’d be on an drip of pain medication, and I’d have a nasty scar down my stomach. Not that I ever had six pack abs before, but a scar wouldn’t help.
A lot of people would rather have a surgery than chemo. I was the complete opposite. I did not want a surgery. At all. At least the chemo will wear off. After a surgery, I’d have a scar in a not-so-hidden place. All that I had been left with after chemo was a bald head (which will grow back) and two collapsed veins in my arms (which will get better).
I did not want anything permanent to result from this experience. It was going to be a chapter in my life that was kind of crappy, but that would be it. Once it was over, I’d go back to my life like nothing ever changed, just that funny memory of when I was in the hospital for 9 weeks because my balls hated me.
But, if I needed the RPLND, I wouldn’t fight it. I’d ask all the questions I’d need to ask, fully understand what the problem was, why exactly this was the right solution, and get as clear of a picture as to what I would expect before, during, and after the surgery. After all, I’d already gone through so much, what was one more little surgery?
Before I could find out if my abdominal lymph nodes were clear or not, I had to find out if my other testicle would hang around for the long-term. The first ultrasound that detected cancer in my right testicle also found an unknown mass in my left testicle. While they couldn’t clearly say it was cancer, the doctors said that given my circumstances it was enough to be wary. While it is rare to get testicular cancer in the first place, it is even rarer to get it in both testicles. However, they told me that for someone who has had testicular cancer once they have a greater chance of getting it a second time than someone who has never had it at all.
Since they weren’t sure what was going on in my left testicle, the plan was to scan it again after chemo to see if anything had changed.
On the day of the ultrasound, I was met by ultrasound tech Stacey, who didn’t know that the scrotal ultrasound she was performing was being done on my scrotum. No, she wasn’t trying to scan my testicle from my ankle, she just thought the noun for scrotum was “scrotal.” “Please put your scrotal on the towel,” she said. At least she inadvertently got a chuckle out of me before I’d find out if I’d be without balls for the rest of my life.
After she finished her scans, in walked the boss-lady. “The pictures look very good,” she mentioned quietly. Confused, I asked, “Wait, do the pictures look good? Or, what the pictures show looks good? Because there’s a very big difference. You can paint a beautifully accurate picture of a tragedy, and it’s still a terrible image.” Boss-lady responded after thinking for a moment about my question, “Both. Both the picture and what’s in the picture look good.” PHEW.
Boss-lady went on to show me images of the ultrasound which clearly showed no significant markings, masses, or questionable curiosities. “Clean bill of health, at least from me,” she said as I was ushered out of the room.
After an uneventful CT scan I then had to wait two days before meeting with Dr. Pomerantz at Dana Farber for the long-awaited answer to whether my lymph nodes were clear or not.
Depending on the cellular makeup of my lymph nodes, either the chemotherapy would be tremendously successful or it wouldn’t. If too much teratoma were present in my abdomen, the chemo would not be able to clean them out completely. Meaning, RPLND, or “suck” for short.
Months prior, I learned that Dana Farber as an institution airs on the side of caution when it comes to surgery. Their medical theory is that it is only a good idea to operate if it’s abundantly clear that it is necessary. Dr. Pomerantz touted their data to say that if lymph nodes are less than 1 cm in diameter post-chemotherapy, than the likelihood for cancer’s return is very, very low.
So that was the goal. Less than 1 cm in diameter. Before beginning chemotherapy, my lymph nodes measured around 2.5 cm. After a chemo regimen like mine, a pure carcinoma would be wiped out. But since I got to enjoy a mixed germ cell tumor, there was a cellular party going on in my body, and everyone was invited; the fat idiot called “teratoma” and even the boring “yolk sac tumor” got to show up for a bit of fun.
I sat in the doctor’s office waiting with my dad to hear the news from my doctor, good or bad. Before we had too long to think about it, Pomerantz’s oncological fellow came in to deliver the news: “We are pleasantly surprised with where you are, and did not expect this kind of result. You responded much better to the chemotherapy than we thought you would and your lymph nodes have shrunk almost completely. Of the three enlarged lymph nodes that were each around 2.5 cm in diameter, two have vanished completely, and one is around 0.9 cm.”
I had built myself up for the worst, expecting to hear that I needed the suck, and the only response I could muster up was, “so this is good news?” The fellow, with a laugh, answered, “Yes, very good news.” But he went on, “However, since your remaining lymph node is 0.9 cm, it sort of puts us in a medical gray-area. Normally, we operate on any patient whose lymph nodes measure at 1 cm or greater. You’re on the cusp of needing surgery, and in times like this, we leave the option open to you; either we can go ahead with surgery or not, it’s up to you, and either choice is a good one.”
This was not expected. The entire process up until now I hadn’t been given any choices. It was clear cut to every doctor I saw: I had cancer, I needed a testicle removed, and I needed to begin chemotherapy immediately. There were no choices, because it was very clear how to cure me. But now, there was uncertainty. Given this uncertainty, it was my opportunity to take things into my own hands and make my own decision, “No, I don’t want surgery.”
“Okay,” the fellow replied, “However, this doesn’t mean you’re in the clear just yet. Because you are in this medical gray-area, we have to be much more wary than we would on another patient. We’ll have to perform our next CT scan sooner than we normally would. We have to watch very closely, and if anything changes, even a little bit, we’ll have to move ahead with a surgery. If that lymph node grows before the next scan that means there is cancer left and we have to remove it.”
In walked the boss-man, Dr. Pomerantz to offer his concurring opinion and to explain some of the statistics going into this decision. “Based on your situation,” he said, “if we were to open you up in an RPLND there’s a 75% chance that we’d find nothing. That your lymph nodes are enlarged but they are empty. There’s a 25% chance that we’d find something, but only a 5% chance of what we’d find, it being cancer. So really, you’re looking at a 5% chance out of a 25% chance that something is going on in there. Given these odds, we’d rather not go ahead with a surgery. There are some patients, however, who say ‘no matter what I don’t want there to be any chance for cancer so open me up and get it out!’ That’s why we give you the option.”
Knowing this background, I made sure it was even clearer than before that I didn’t want to go ahead with surgery. Since I’m being scanned again in a few months to see if anything had changed, that scan might make it even clearer that I do need surgery, and if that’s the case, why speed that up? Might as well buy myself a few months of recovery post-chemo before actually needing surgery in the future.
Before we left the meeting with boss-man and his fellow I asked, “Why do you think my cancer responded so well to the chemo?”
Boss-man replied, “Beyond the simple answer of the cellular make-up in your body, I think it had a lot to do with your strength. It’s not often we get someone who is as optimistic and positive throughout this process. That has a huge impact.”
A few weeks later I made a donation to Dana Farber in honor of my nurses and doctors. The development staff allowed me to send a personalized card to each doctor with a note. After doing this, I received a call from the medical fellow and he thanked me for the gesture. After we spoke for a few minutes he left me with this, “In medical school, they teach you that one day you’ll have a patient who you’ll never forget. That’s you, Aaron.”
Now it’s early February, two months after getting the good news in December, and a month until my next follow-up scan in March. Mostly everything is back to normal. The hair on my head is growing like a chia pet, and it’s almost as if I never had cancer in the first place. Except for a few reminders. I can still feel the two collapsed veins in my arms, although they are not nearly as hard as they once were. And of course, a prosthetic testicle DOES NOT feel like a real testicle.
Spending the summer of 2014 like every other college student between their Junior and Senior year I was embracing the life of being an intern. I got the opportunity to work for an awesome Health Department near my hometown of Charlotte.
Not too far into my internship (maybe a week and a half in) I felt a weird pain that had decided to make its way into my life and decided I should go get things checked out. I went to my physician, referred to a Urologist and it was confirmed that I had Testicular Cancer.
When I got told this I didn’t know what to do…I have friends, family, fraternity brothers counseling me and telling me that they were in my prayers and if I needed anything they were there for me…for that I couldn’t be more thankful!
Later to find out it was a form of Embryonal Carcinoma, I had a procedure to remove my left testicle where they had deemed the tumor to be growing. After that, I had to play the recovery and the waiting game to get a post-op CT scan to see what we were going to be working with or what was the next course of action.
Once the scars were healed and I was up and moving again I went and proceeded to get my scan. Two days later…more news but not good. It had been long enough for my cancer to spread to a set of lymph nodes in my lower back…my mother was with me which made it worse…I hate to see her cry/upset. The next step was to meet with an Oncologist to discuss options of treatments.
Well by this point I had just accepted the fact that it happened and it was removed and nothing else needed to be done. With that little roadblock blown to smithereens I was facing a very difficult decision to be made: Stay at home, receive treatment or return to school and get treatment up there at an unfamiliar facility. This was an arduous task when talking to my parents and figuring out what to do.
I had already had extra time tacked on to my sentence as a college student and really didn’t want to have any other time added. So with that being said I packed all of my stuff up moved back into my residence hall which I was one of the 5 assigned RAs and the week after that had my port put in.
It was decided that I was going to going through the BEP regimen which consisted of a 3 cycle format. While taking classes, working and being involved I still managed to go for treatments when I needed to. There were three weeks where I was not able to attend class at all but had more than cooperative upper administration and professors that made it easy to keep up with what I had on my plate of a full course load.
Now don’t get me wrong, as any other chemo patient can tell you these times sucked. There were more bad than good times while going through treatments, many nights hugging the toilet from getting sick and losing so much weight due to appetite loss and diet restriction. Somehow I was able to get through it and was blessed with the best support system. I had friends, family and fraternity brothers who helped me and dropped what ever I needed help with whether it was just sitting with me at treatments, getting food or being there for me and my sick nights. One of the biggest moments of this all was when I was walking out of our Student Union and my brothers alongside another fraternity were there shaving their heads as well as any one else who wanted it to raise money for my chemo medical bills (close to $800).
Through all the fire and flames and most of the battle was fought within me, I could not have made it without all of my wonderful family, friends and brothers as well as all the medical professionals at my treatment facility for they were my rock and one of my biggest motivations to get through a dark time. Receiving my last treatment on October 20th ,2014 (my parents 30th wedding anniversary) and November 18th 2014, my cancer free diagnosis visit, as two of the best days of my life.
Here I am a year and a couple months later still cancer free, graduated from college and hoping to start Graduate School in the Fall of 2016 I couldn’t feel better and have a more clearer outlook on life and nothing can stand in my way!
Mother of a testicular cancer survivor
In January 2014 my twenty-four year old son, Alexander, had the world by the tail. He was in his final year of Geology at the University of British Columbia (UBC) with the promise of graduation in May and dreams of a permanent research job in Canada’s oil patch. He had arrived home for Christmas tired and gaunt but as parents, my husband, Ross, and I recognized the combined signs of late nights in the lab and living on your own eating unbalanced meals. He looked the picture of undergraduate health and well-being. I had spent a couple of days with him two months earlier as I headed to Japan to visit our daughter, Victoria, and was pleased to see how well he looked. We had not seen him since the previous Christmas, as he had chosen to stay on campus to participate in a research project during the 2013 summer term.
Ross and I had waved goodbye on January 6th with parental words of encouragement regarding the final push to complete research papers and excited promises to book our flights to Vancouver for May’s graduation ceremonies. Within a day or two of his return to Vancouver, Alex called asking for advice about shortness of breath and chills. Because H1N1 flu was rampaging across western Canada accompanied by the fact that Alex had just been on two five-hour flights with poor air quality, we assumed that is what he had picked up. In true mother-form, I offered the suggestion of chicken soup and getting to bed on time. I called him the next day and, because he was not feeling any better, suggested that he go to see a pharmacist and find an over the counter medication for flu symptoms. Because it was the weekend and Alex has never been one to take medications, he chose instead to sleep and hoped that he’d feel better on Monday.
It was impossible to contact him during the day while he was on campus because Alex did not own a cell phone. We have since remedied this situation. Due to the fact that we had not heard from him since Sunday afternoon, we assumed that he had shaken off whatever had been ailing him and had headed to class. Because both of our children live away from home, every evening before going to bed I check my email to see if either of them has contacted me. Imagine my surprise when I discovered an hour-old text message from Alex telling us that he’d collapsed in class and had just been told that he has cancer. I remember telling Ross that I hoped that one of Alex’s friends had grabbed his iPod and decided that this message was somehow a joke. We both agreed that Alex chose his friends well and that none of them would be drunk or stupid enough to think that we’d find this funny. I replied with a question mark and hoped to receive something from Alex. It was well past midnight before I heard anything from him. By this time, Ross had had to head off to bed because he had a 6am Skype meeting with colleagues in Spain. We had agreed that I’d wake him if needed.
I sat alone crying in my dark kitchen staring at the computer screen willing Alex to let me know what was happening. It is extremely hard knowing that your baby boy is out there somewhere hurt and petrified. All that you want to do is be with him and take the fear and pain away. As I sat waiting, Victoria popped up on Skype. She was sitting at work in Gifu (Japan) and noticed that I was active on Facebook in the middle of the night and she wanted to know if I was all right. Without thinking it through, I blurted out that her brother had cancer and that I was waiting to hear from him. This was the first time in her life she was at a loss for words. It may just have been a result of something akin to shell shock but I found this quite comical and burst out laughing. Unfortunately she had the volume turned up on her computer’s speakers so everyone in her office heard the news and then heard her crazy mother laughing. Thank goodness most of them speak no English but they were able to see the blood drain from Victoria’s face so they knew that she’d received bad news but then were very confused to hear me laugh. Oh well, these are the joys of sending your children to work abroad. Victoria’s first reaction to the news was that she’d come home immediately to which I responded with an emphatic ‘no, stay put.’ This may sound hard hearted but at this point, I had no answers about Alex’s future and I wasn’t in any position to have to deal with Victoria’s questions and concerns. I told her that I’d revisit her offer once I knew what the future held.
Throughout the night, Alex was able to send a couple of text messages letting me know that he had testicular cancer, that a surgical resident had talked to him about removing the testicle immediately, that he wanted me to come to Vancouver asap, and that he was scared. Without a cell phone, Alex was only able to text between blood draws and ultrasounds and only when he could find a WiFi connection. Waiting for the next message was driving me crazy plus Victoria kept Skyping me wanting to know what was going on.
At this point, I knew I needed help from someone on the ground and realized that we know only one couple in Vancouver. Chuck was a childhood friend of Ross’s and we’d met his wife, Dana, only once but I decided to try calling before it got too late. At about midnight, Vancouver time, Dana picked up on the first ring. I introduced myself and told her what had happened. She was wide-awake and ready to help. Because Chuck is a radiologist at VGH, she knew how to bypass the hospital switchboard and was able to track down Alex’s whereabouts to the Emergency Department and get me the name and number of his nurse. Dana then offered to stay awake all night in case I needed her.
As I sat in amazement that an almost complete stranger was willing to forgo a night’s sleep in order to be of assistance, the phone rang shocking me back to reality. It was Alex! A nurse had noticed him fumbling with his iPod trying to send messages and had loaned him her cell phone. When he explained that he was texting his parents in Ottawa and that he didn’t want her to incur long distance charges, she told him that his parents were probably worried about him and that he could talk as long as he wanted. It was wonderful to hear his voice. Even though he was on the verge of crying and I was doing everything in my power not to let him know that I too was battling tears, he was able to give me a synopsis of the day’s events.
He’d awakened that morning still not feeling 100% and got himself to campus. After his first lecture, he went to talk to his prof about an assignment and the next thing he knew, he was lying on the floor looking up at a sea of faces. Once folks realized that he was coherent, the other students went their separate ways but the prof remained by Alex’s side until he could sit up. UBC’s protocol is to call an ambulance but the prof realized that the location of the geology building made it very difficult for a motor vehicle to approach and that UBC Hospital was a three-minute walk from the front door and Alex was mobile. This gentleman stayed with him while he had a blood test and waited for the results. Alex laughed when he related the story of the doctor coming out to the waiting room, scanning the patients, and calling ‘Alex’. Alex raised his hand and the man approached him with the statement, ‘Well, I guess that you’re not pregnant.’ I can only guess that the blood tech had written ‘Alex’ on the vial so the doctor wasn’t sure is this would be a pregnant Alexandra or a cancer riddled Alexander. Alex was then asked if he was a smoker (no) and then, the all-important question, ‘Do you have a lump down there?’ I have since spoken with Alex’s prof and we both wonder what kind of doctor refers to a lump on a young man’s testicle as ‘a lump down there’. Alex admitted that he’d found the lump in August 2013 but had hoped that it would just go away. Alex had to say goodbye to his prof as he was then sent by cab to VGH for further tests. At Emergency, he was sent for an ultrasound and more blood work. A surgical resident talked to him about the immediate need to remove the cancerous testicle. The thought of surgery scared him as he’d never had surgery before but the resident was very persuasive so he signed the permission form. Because Alex had been having problems breathing, he was then sent for a chest x-ray. Once he’d been returned to the Emergency Department to wait for the surgical resident to prep him for the OR, a wonderful nurse loaned him her phone to call home. As we were chatting, Alex told me that he had to go as someone had come to get him. I remember telling him that I’d be in Vancouver as soon as I could get a plane ticket and that we loved him ‘to the moon and back’. Once I hung up and realized that my baby was going into surgery all by himself, irrationally I felt like a failure for not being with him in his time of need even though rationally I knew that I had done nothing wrong.
Because I wasn’t expecting to hear from him during surgery, I spent the remainder of the night booking my flight, catching Victoria and Dana up on the latest news, creating a ‘to-do’ list (contact someone at UBC to let them know that Alex isn’t skipping class; cancel chiropractor appointment; figure out how to tell my mum that her grandson has cancer which caused me to be thankful that his other 3 grandparents were already dead. Seeing this last point in print has made me realize just how my mind was working that night.), and counting the minutes before I thought it was wise to wake Ross and ruin his day. Because I had been operating on adrenaline, fear, and nerves, I had forgotten that our family had one other member that needed to be included in all decisions. We have hosted international students since 1998 and Emma had been living with us since 2012 while she attended high school. The fact that our hosting contract clearly stated that minor female students must not be placed in a home with a single male, only added to my growing laundry list of things to sort. Before Ross and Emma awoke, the phone rang again bringing me once again back to reality. I remember being aghast hearing Alex’s voice. Before I clued into the fact that he was telling me something important, my mind conjured up all sorts of scenarios … the surgery had been postponed; the surgeon had opened him up and immediately closed him because the cancer had spread throughout his body; Alex had changed his mind and refused surgery; or, this was all just a bad dream, Ross would pinch me and I’d wake up. That night, my mind was a wild and wooly place.
Alex explained that the doctor who’d approached him was not the surgical resident but instead, an oncologist from the British Columbia Cancer Agency (BCCA). This gentleman told him that chemo must be started immediately and surgery could wait. Alex had no idea exactly what this meant but if it meant no surgery, he agreed to accompany this gentleman. Alex’s guardian angel came in the form of Dr. Christian Kollmannsberger. A VGH radiologist had read Alex’s chest x-ray and what he saw caused him to contact Dr. Kollmannsberger. The x-ray clearly showed tumours on both lungs and fluid in the chest cavity causing Alex’s shortness of breath. In Dr. Kollmannsberger’s opinion, yes, the testicle did have to be removed but the more pressing issue was to stop the cancer from spreading further. The orchiectomy could wait. Alex seemed to be quite at ease with this turn of events because, in his words, ‘I like Dr. Kollmannsberger, he’s very calm.’ I let Alex know that I’d be arriving in Vancouver the following day and we both hung up feeling serene for the first time in six hours.
Functioning under the impression that Alex was now in good hands (at this point I’d not yet met Dr. K. and I knew nothing about the reputation of the BCCA, I just knew that my son was calm and that was good enough for me) I spent the remainder of the day going through my to-do list but first, I filled Ross in on what had happened and broke the news to Emma. She immediately stated that she wanted to stay with us and not be moved if I had to stay in Vancouver longer than a few days. My plan was to go and fly Alex and his diagnosis home for treatment at our local cancer centre so I asked her to hold off telling her parents until we had a better idea what the future held. Like most huge bureaucracies, it is almost impossible to find a direct contact number for a specific service at UBC. I decided to make a cold call to the Faculty of Science and hope that I’d be sent to the person who could provide answers. Once I’d explained the situation, I was immediately connected with the head of ‘Science Advising’ and was surprised to learn that this gentleman already knew about Alex’s medical situation. It is nice to know that when a student collapses in class, word gets out to the people who need to know. I was told not to worry about his academic situation and that once we knew if he was able to return to his studies, to contact him and we’d discuss how to make up for any lost time. This one call has resulted in Alex’s degree completion being handled by the head of ‘Science Advising’ which has caused Alex to smile many times as this is one of those offices that treats undergrads like cattle. Instead of having an assigned councilor who might remember your file, you take a number and talk to whoever is next available. Alex now understands that there is a silver lining to cancer. He is enjoying being able to walk into this office, bypass the check-in desk, and go straight to see his advisor.
I packed for two weeks and left home the following day. Little did I know that I’d be gone for 346 days.
Upon arrival at the BCCA, I discovered Alex hooked up to IV chemo and in good spirits. I met Dr. Kollmannsberger and was told that Alex had ‘non-seminomatous germ cell tumor with extensive lung metastasis, brain metastasis and primary tumor in situ’. Before I could process this information, I was hit with the following: ‘Despite the extensive metastasis, your son still has a 30-50% chance of being cured. We’re going to avoid bleomycin due to his extensive lung involvement and rather treat him with 4 cycles of ifosfamide, Cisplatin and etoposide. After chemo, the resection of his primary tumor and potential resection of residual lesions will be done. As for his brain metastasis, it depends upon the post chemotherapy staging and could potentially involve cranial radiation or surgery, or just simply surveillance.’ I knew that Alex was sick but hearing that he had only a ‘30-50% chance of being cured’ made me feel like I’d been hit by a locomotive. I was able to collect my thoughts and asked when I could take Alex back to Ottawa for treatment. Dr. K. patiently explained that Alex was so sick that that he possibly wouldn’t survive the plane trip. I figured that my planned two-week stay had now been extended to three months.
I had given little thought as to where I’d stay while in Vancouver. Dana had offered me a chesterfield but Alex’s nurse suggested that I stay with him that first night. The lounge chair in his room made out into a single bed complete with sheets and a blanket. Alex went calmly off to sleep that evening happy in the knowledge that I was there. At 3am, all hell broke loose. Alex woke up screaming that he was drowning. I shot out of my lounge-bed and nurses arrived within seconds. Alex, covered in sweat, his eyes as big as saucers, gasped for breath. One of the nurses added something (possibly a relaxant) to his IV. Within minutes, Alex was noticeably calmer but his breathing was still shallow. It was suggested that we try to get back to sleep, the lights were turned off and Alex was soon asleep. I however, was awake the remainder of the night.
My first full day at BCCA was one of uncertainty. Alex was seen by a respirologist who made comments about inserting a chest tube and draining ‘the fluid’. I asked if the fluid was blood and was told that this information would not be known until they saw what came out. I don’t know why medical people can’t just answer a question rationally instead of hedging their bets. Even I, a person with no medical training, could connect Alex’s dots. His chest x-ray showed tumors on the outside of his lungs; beyond the chest cavity are ribs; lungs expand when inhaling; lungs covered in tumors rub against ribs causing bleeding therefore, the unknown fluid is blood. I’m not sure what other type of fluid the respirologist thought it could be. Alex was not at all pleased with the thought of a chest tube. Every time he’d think about the procedure, he’d panic and hyperventilate causing his blood pressure to skyrocket. It wasn’t until later in the day when he was unable to lie flat and successfully breathe for an MRI that it became medically necessary to suspend chemo and return him to VGH to drain his chest. My job during the tube insertion was to keep him talking so that he wouldn’t dwell on what was happening. This was a bit difficult to do as we both watched the procedure as it was reflected off the doctor’s face shield.
Alex spent 10 days at VGH while 4 litres of blood was drained from his right chest cavity. During this time, it was my job to convince him that his stitches were strong enough that he could get up and walk around. Of course the physiotherapist and his nurses told him that walking was the best exercise, as it would reduce the possibility of blood clots and bedsores. Alex however knew better. He was convinced that if he just lay still, the blood would drain and he’d suffer no complications plus, the tube hurt when it rubbed against his lung and the stitches pulled with every step. At first, I tried gentle persuasion but when that didn’t work, out-right bullying and threatening did the trick. Sometimes being a caregiver means pulling out the big guns. Alex wanted to return to BCCA and restart chemo so that he could see some progress but couldn’t until the blood had drained. I think I finally resorted to telling him that I’d call Dr. K. and tell him to cancel Alex’s chemo because he had decided not to co-operate and get his body moving. He acted just like he did when he was four years old when told that he couldn’t do something because he’d chosen not to complete another task first. He dug in his heals, found his inner strength and walked those halls. During this period, we were also introduced to the fact that he was expected to inject himself daily with a drug designed to boost his immune system for the first ten days following each chemo cycle. Alex had never had a needle phobia but injecting himself was beyond his tolerance. Various nurses tried to teach him but he’d lower the sharp to within a hair’s breadth of his skin and couldn’t complete the injection. I had injected our diabetic cat only a couple of times but it was enough experience that I knew I could do it. What I had not considered was the fact that injecting your cat is very different than injecting your son. As much as I loved my cat, I had 24 years of memories and love tied up in this young man. No parent wants to deliberately cause their child pain but, Alex and I worked out a system where he’d fill the syringe and swab the site. I would then count down from five and inject on zero. We actually became quite good at it however, some days he’d tense his abdomen and that injection would result in a lovely green-yellow bruise. We laugh about it now but neither of us misses this routine.
Since arriving in Vancouver, I’d been camped out on our friends’ chesterfield and as comfortable as I was, I knew that this could not go on forever so I hit the streets looking for accommodations. Alex had been living in what I refer to as ‘student dump housing’. He was renting a moldy, cold, damp room in the basement of a family home. While he was healthy, a little mold and mildew wouldn’t hurt him but now that he was undergoing chemo, he could not return to this dive. Staying in a hotel or at a B&B was financially out of the question and because universities were in session, furnished rental units were at a premium. I also needed a place near BCCA and VGH as well as on a transit link as I had no vehicle. Unknown to me at the time, many homeowners near VGH have turned their homes into ‘Guest Houses’ intended for folks who’ve had to come into Vancouver for medical treatments. The accommodations I chose can best be described as a ‘bed-sit’. It was located a 3 minute walk from the front door of VGH, a 10 minute walk to BCCA, an 10 minute walk to the grocery store, and a 4 minute walk to the laundromat. We had a room with 2 single beds, a TV, a chesterfield and chair, a full kitchen and bathroom plus a balcony. At this time I was still under the impression that we’d be home by Easter.
As the caretaker of a young adult cancer patient, my days were spent keeping Alex’s mind busy. Because his physical strength had been zapped, he did spend many hours sleeping and playing video games. Because Alex had always enjoyed photography, a friend advised me to research photography Meetup groups in Vancouver. I had never heard of ‘Meetup’ before and was thrilled to discover this on-line organization. With a couple of mouse clicks, we became members of ‘Vancouver Photowalks’ (http://www.meetup.com/Vancouver-Photowalks/). This became our major social outing during the two-week breaks between chemo cycles. Members understood and accepted Alex’s limitations as he struggled to keep up with the group and many offered to walk with him so that I could go on ahead and enjoy the company of others. We tried not to miss a single outing. Even though Alex’s stamina waned with each chemo cycle, he was determined to attend all photowalks. This actually made my job a bit easier because he set himself a goal and worked toward it. So that we did not sit in our tiny rooms and drive each other crazy, we’d go for walks, go grocery shopping, and do laundry. We even managed to fit in a short trip to Vancouver Island and Whistler. Of course, these break weeks were not all fun and games. There were always the routine blood tests that often resulted in panicked calls from Dr. K. telling us to return to BCCA for either a blood or blood & platelet transfusion. This meant hours of waiting while Alex’s blood was typed and crossed before the bags of blood or platelets would be sent by taxi from the Red Cross office a half hour’s drive away from BCCA. I once offered to ask our landlord if he’d drive me to the Red Cross and I’d pick up the blood myself. I was told that the protocol of the Red Cross was that an unknown taxi driver was more trustworthy than a patient’s family member. I’m not sure what the Red Cross thought I’d do with these blood products.
During chemo weeks, Alex remained at BCCA as an in-patient. During his stay at VGH, he managed to pick up Vancomycin-resistant Enterococcus (VRE). I’ve been told that this is not unusual during long hospital stays but it does mean that he’ll never be able to take the antibiotic ‘vancomycin’. The upside to this problem was that it meant he had to have a private room at BCCA, as he was now considered ‘contagious’ to those with suppressed immune systems. It also meant that we could now watch ‘Big Bang Theory’ at full volume and laugh as loud as we wished without bothering anyone. I had watched the movie ‘Patch Adams’ and appreciated his belief that laughter is the best medicine. Alex always felt better after a good belly laugh and the comedic genius of Jim Parsons helped him through the worst chemo cycles.
During Alex’s cancer treatment, it occurred to me that very few friends had visited him or even called to see how he was doing. At first I thought it was because they were all in their final year of studies and therefore too busy but I discovered that those of Chinese descent believed that Alex’s cancer was a bad omen. I had never heard such nonsense and was told by one young woman that this was widely believed by her grandparents’ generation but that many young Chinese still held this belief. I figured that I was too busy to re-educate these folks so Alex now has to re-establish these friendships with those he chooses.
In order to keep friends and family in the loop, I spent hours, usually while Alex slept, writing email updates. Of course, I was in daily touch with Ross by phone so he always knew what was happening. Emma, bless her heart, convinced her parents that she wanted to stay with Ross so that she could support him. Because she’d lived with our family since 2012, she felt at home with us and, since this experience, has a special place in our family.
When chemo was complete, we chose to remain in Vancouver for another eight months so that Alex would have a continuum of care, which ultimately involved an orchiectomy and two lung surgeries. I am assuming that most of the readers of this article are Americans. I should explain that the Canadian health care system is not as wonderful as we make it sound. Alex attends university in a province in which we do not live. Because he was too sick to return to Ontario, he received his cancer treatment in British Columbia. Even after chemo, it would not have been as easy as you’d think to return home to Ontario for an orchiectomy and lung surgery so we chose to stay in BC. Because we’d established a relationship with a fantastic oncologist, this paved the way to a top-notch urologist and the best thoracic surgeon in British Columbia. These are contacts that you cannot establish on your own. Socialized medicine dictates that patients are not permitted to choose their own specialist. You are assigned to whichever doctor your general practitioner can get to take your file. Alexander was so very fortunate to be sick in a city where some of Canada’s best specialists practice. I am most thankful to the unknown radiologist at VGH who knew that Alex needed Dr. Kollmannsberger. In Canada, we consider that we’ve won the lottery if we happen to be seen by a world-class specialist and, as I learned since returning home, Dr. K. is one of four world-class testicular cancer specialists working in Canada and the other three are located in Toronto so even if I had been able to return Alex to Ottawa for treatment, there was no guarantee that his outcome would have been the same.
By the end of chemo, Alex’s scans and x-rays showed that the tumors on his lungs had nicely shrunk and the spot on his brain had disappeared. This was something worth rejoicing and we did by going out to dinner at Alex’s favourite restaurant. It always seemed that every dance of joy was followed by warning shots across the bow. Dr. K. warned us that, if after the orchiectomy, the pathology report showed the presence of teratoma Alex would have to undergo lung surgery to determine if it had spread to the lungs. Alex faced the orchiectomy with trepidation because he’d never had a general anesthetic but the surgery went off without a hitch. Within a week Dr. K delivered the bad news. Teratoma was reported in the testicle. I now had to help Alex mentally and physically prepare for at least one lung surgery.
As we waited to see the thoracic surgeon that Dr. Kollmannsberger had told me was the right man for the job and because I had 100% confidence in Dr. K. we’d have waited to the end of time to see Dr. Yee, I made certain that we daily left the apartment even if it was just for a walk through the neighbourhood but, because we had no vehicle, we stayed in Vancouver and thoroughly enjoyed the city wherever local transit could take us. We were fortunate that it took only two months to see Dr. Yee. After receiving excellent scan, x-ray, and blood results from Dr. K., we were both knocked flat when Dr. Yee rushed into the consultation room and pronounced that he didn’t think that he’d be able to remove all of the tumors and as a result, Alex could expect to live only another two years. WOW!!! Dr. K. hadn’t prepared us for this grave news. Alex was given the option of not going through with the surgery and just enjoying his remaining years but he agreed to the first operation. The best that Dr. Yee’s assistant could do was to schedule the operation seven weeks hence. My first thought was: ‘How am I ever going to keep Alex busy for almost two months and his mind off his imminent death?’ We were both crying as we left the office but I was also beyond angry at Dr. K. for not preparing us for this news. We’d placed our faith in this man and he’d failed us. By the time we’d walked back to our bed-sit, the tears had been replaced by shock and we sat for an hour or more in silence staring at each other. Once I’d re-established contact with my faculties, I called Dr. K. to ask why he’d withheld such important information. Nancy, Dr. K’s assistant, reminded me that it was Clinic Day so Dr. K. was unavailable until dinner time but that she’d make certain that he returned my call. I decided that, because we’d agreed to attend a photowalk that evening, we’d still go just so that we’d be in the company of friends. I thought that Alex would not want to go out but he was still so shocked that he would have done anything I suggested.
While on the ferry to North Vancouver, my phone rang. It was Dr. Yee’s assistant telling me that he’d just had a cancellation and that Alex’s surgery could be moved up to the first week in September. I quickly conferred with Alex who agreed to the date change. Alex didn’t take many photos that evening, as I’m sure, his mind was spinning. I chose not to tell anyone our news until I’d heard from Dr. Kollmannsberger in the hope that there was a reasonable explanation for this news. Due to the noise at Lonsdale Quay, I missed Dr. K’s call but his message was a heartfelt apology for what had transpired earlier in the day. His explanation was that Dr. Yee had not been a member of Alex’s cancer team and therefore had, for some reason, not received Alex’s most recent lab results. It seems that Dr. Yee had determined Alex’s future based only on his original diagnosis and CT scan. His message included the fact that, when Nancy told him what had happened, he’d contacted Dr. Yee to discuss this enormous screw-up. He left his personal number so that I could call him that evening but, and perhaps I should have accepted his apology and returned his call so that he could go to bed with a clear conscience, I chose to spend the rest of the evening celebrating with Alex that he indeed had a cancer-free future to look forward to. I did return Dr. K’s call the following morning and smiled inwardly when he picked up on the first ring sounding relieved that I was calling. I cannot tell you how often I was grateful that Alex had the good fortune of being treated by an oncologist who regarded his patients as humans first and jobs second. I was willing to forgive Dr. K. this one hiccup in Alex’s treatment.
Just to add to my stress, the day before Alex’s surgery, my mother passed away. There is never a good time to lose your parent but honestly, she could not have picked a worst time to die. I decided not to share the news with Alex as he already had enough to deal with so, while he played a video game, I went downstairs, sat outside on the porch and cried. Our landlord must have heard me as he came out dreading that we’d received more bad news from Dr. Yee. When I told him what had happened, he went in to the house but returned quickly with two glasses of wine and we toasted my mum.
Alex’s surgery was scheduled to start at 7:30am so we had to be at VGH at 5am. Neither of us knew what to expect but Alex faced the unknown with such bravery that I could not have been prouder of him. We had not seen Dr. Yee since that day in the consulting room but the 10 minutes we spent with him in the OR prep room, made me appreciate that Alex had a very passionate surgeon about to attempt to take out 13 lesions and leave him with enough lung to lead a normal life. Dr. Yee reiterated the hope that none of the lesions would contain teratoma. After kissing Alex and telling him that I’d see him in Recovery, I spent the next seven hours sitting in the cafeteria, receiving condolence messages from friends and family who had heard about my mum’s passing.
After the surgery, Dr. Yee came to let me know how it had gone. He was noticeably excited. I could not imagine someone operating for seven hours being that animated. He explained that one of the tumors had begun growing into the heart muscle but that he had managed ‘to get the bugger out’. It’s nice to see that a challenge can still excite a seasoned surgeon. Perhaps it was because I did not appear to share in his enthusiasm that he quickly hid behind his professional face and told me that Alex was fine. I told him about my mum and, without thinking, he wrapped his arms around me. We sat for about 20 minutes while he asked about my mum and told me a bit about his parents. He apologized that he had to return to the OR but called his resident to take me to see Alex. I don’t think that this young man was too happy being used as an escort but, when your boss tells you to do something, you don’t question his orders. From this point through to the end of Alex’s lung surgeries, we had a very unique relationship with Dr. Yee.
Taking care of someone who has just had lung surgery is very different than taking care of someone going through chemo. During chemo, there was the expected vomiting, exhaustion, constant need to urinate, lack of appetite, boredom, fear, IV site pain, requirement to walk to reduce the formation of blood clots, and stress. BCCA also had enough staff to make certain that no patient was ignored. There was never enough staff at VGH to deal with patients’ needs. Without a family member or friend, patients’ buzzers often went unanswered. During his 16-day stay in hospital, I spent most of the time trying to make him comfortable. This meant changing the sheets on his bed a couple of times daily; giving him sponge baths; washing his hair; helping him to the washroom; trying to relieve his constipation that he developed as a side affect of the anesthetic; convincing him to walk around the 10th floor at least once every two hours; and watching over him while he napped. It was exhausting! By the time I’d leave his room at 9pm, I was ready for bed.
Ross arrived in late September to celebrate Alex’s 25th birthday. It was wonderful seeing him again after almost 10 months. Ross accompanied us to the appointment with Dr. Kollmannsberger where we were given the incredible news that there was no teratoma in any of the 13 wedges. Alex now had to make a decision regarding his second lung surgery. Dr. K. explained that because there was no teratoma in the first lung, he was now pronouncing the second lung also teratoma-free. This meant that Alex could decide not to go through with the second surgery. Alex emphatically stated that he wanted all of the lesions gone. Now that the cancer was gone, he wanted every lesion gone as well. He knew that the second lung would be more torturous than the first because it was the lung on the same side that had to be drained back in January. This meant that the tumors had been more numerous and therefore, Dr. Yee had a larger job to do.
Because it had been decreed that teratoma was not a possibility, Alex was no longer considered an emergency. The earliest Dr. Yee could operate was early December. We were concerned that we might not make it home for Christmas. In hindsight, I’m glad that Alex had those two months to rebuild his physical strength. I discovered a kinesiologist, who specialized in chemo rehab. She was wonderful! She worked with Alex to improve his lung capacity to the point that he could walk three blocks back to our bed-sit without pausing for a rest.
Alex’s second surgery was not as frightening as the first. No one looks forward to lung surgery but Alex is a very rational young man. He’d been through it once and, even though his relationship with Dr. Yee had gotten off to a rocky start, he now had utmost confidence in this man. He was also looking forward to going home when it was all over. He’d learned that Victoria was coming home for Christmas to see him. He had not seen his sister for almost two years so that was a special treat. Dr. Yee decided to take the entire lower lobe out because the blood left in the chest cavity had glued the lung to the chest wall. He decided that there were just too many lesions to take them out individually. Because we knew what to expect, Alex had taken it upon himself to discuss his post-op pain meds with the anesthesiologist prior to the operation. I was amazed watching my son use the proper medical terms when discussing the rules around epidurals with a man who would be responsible for keeping him alive as Dr. Yee poked around in his lung. Alex’s matter-of-fact discussion kept me calm as I realized that he wasn’t as worried as he’d been before his first lung surgery. Of course, this surgery also knocked the wind out of Alex but I do remember him waking out of the anesthetic with a smile on his face. This smile made my heart sing. During his stay at VGH, we were ready for any problem but none presented themselves. Alex knew how to breathe without making the drainage tube rub, he knew that walking would get him home sooner, the anesthesiologist visited him daily to make certain that his pain meds were adequate, and Dr. Yee visited him every couple of hours just to chat. Instead of 16 days in hospital, Alex was released in seven. In consultation with Dr. Yee, it was decided that we’d fly home to Ottawa on December 26th. By that time, it was determined that Alex’s lung could take the change in pressure without doing it damage.
2014 was a year of highs and lows, laughter and tears, exhilaration and discouragement, courage and fear. As the caregiver, I also experienced loneliness because Ross had to remain home due to his job, our pets, and our international student. Yes, we had two friends in Vancouver whom I remain forever in their debt for everything they did for Alex and me but I made many new friends each of whom played an important role in our experience. I am normally not one who asks for help but quickly realized that I needed to learn not only how to ask for help but to graciously accept all offered help even if it made life a bit more complicated than necessary. I discovered that people truly are generous with their time and talents during a crisis. During chemo, I learned that my major job was to listen to Dr. Kollmannsberger, take notes, and make certain that Alex was aware of everything that was said. I spent my days while Alex underwent chemo, attempting to keep his spirits up. While he was with me during his two-week breaks, I’d make certain that he kept as active as possible. This kept his mind off his uncertain future and improved his physical strength that took a beating during chemo weeks. Because we were 5,000kms and 3 time zones away from family and friends, while Alex napped, I’d create mass emails detailing recent events, Alex’s reactions, our activities, and I’d sometimes include my own fears. Before sending these emails, I’d proof read them and more often than not, delete my fears because often, seeing them in print or reading them out loud, made me realize that I could deal with whatever problem presented itself. Even though we now live in a world of instant information, I chose not to Google anything to do with testicular cancer. Ross and my brother-in-law did and some of the ‘answers’ they found scared the living daylights out of them. When I had questions, I called either Dr. K. directly or the BCCA’s patient hotline, which was available 24-7. No question was ever considered too trivial and I never turned in for the night with an unanswered question determined to ruin my sleep.
I do apologize for this blog going on for such a length. It is my hope that my experience may help others just starting on this journey. Caregivers and their needs are often ignored as the patient is considered to be the star of the show. If you find yourself in need of help, reach out and ask for it as your job is far too important to your loved one for you to not be there when they need you the most.
Victoria’s students made Alex 1,000 cranes in hopes of helping him beat cancer. It worked!!
I was diagnosed with testicular cancer three days after returning from my honeymoon.
Worst. Wedding present. Ever.
I remember standing in front of a mirror in a hotel room in Athens, Greece. I had just gotten out of the shower and was drying off, when “it” caught my attention. Hotel mirrors are the worst. They’re always huge and well-lit and show you all the little things you’d rather not see. Usually it’s a fat roll or unsightly body hair, but for me, “it” was a testicle that had swollen significantly in size.
My testicle had been this way for about a month or so. I remember it being an issue the week before my wedding. I didn’t think too much of it at the time. In hindsight, I was probably scared to find out what was actually wrong. I had a wedding quickly approaching and the last thing I needed was any kind of health scare. But looking at myself in that mirror, I finally realized that something was amiss. I walked out of the bathroom and informed my wife that I had a “man problem” (there’s no smooth way to broach the topic of a massive testicle to your wife). I explained to her what was going on and she comforted me as any good spouse would, saying things like “I’m sure it’s nothing.” In the end, we both agreed I should see the doctor when we returned home.
I met with my primary physician a few days later. He poked. He prodded. He examined. He hypothesized that what I had was something called a “hydrocele,” which is basically a fluid build-up around the testicle. He wasn’t certain about this, so he recommended I get an ultrasound and see an urologist.
So the next day I found myself laying uncomfortably atop a cold table, while a woman examined me. She recognized immediately that there was something wrong with the testicle. She asked if I had been kicked or punched in testicles recently. Umm I definitely would remember something like that, lady! She told me she would send the ultrasound results to my urologist. I asked her if she had an opinion. It was then she used the words “a mass” to describe the testicle. A mass? As in “a mass that is cancerous” I thought. Things were getting uncomfortable for me.
Fast forward a few hours later and I was patiently waiting in my urologist’s waiting room, with men who were significantly older than I. I was definitely brining the average age of that room down a decade or so. This can’t be serious I thought. I’m young after all! I’m in fairly good shape. My family has no significant history of cancer. I convinced myself that the diagnosis I was about to receive would be mundane in nature.
The nurse entered the waiting room and called my name. She collected a urine sample (I got pretty good at peeing on command in the urology office!). She collected a blood sample. Finally I saw the doctor. He examined me. He poked. He prodded. He whipped out his handy, mini, cancer-detecting flashlight and tried to shine a light through my testicle. No luck. That ruled out the hydrocele. It took him all of about three minutes to tell me that what he thought I was dealing with was cancer. Was he sure? No. Was he pretty sure? Yes. I held it together emotionally. It didn’t seem real. I sat there as his words echoed in my ears. He explained that surgery was needed immediately. He told me to see the nurse to arrange further testing. At that point, I was still keeping it together, but I was slipping. I joked around with the nurse, but I knew I had to get out of there quickly before I completely lost it. I walked to my car and got inside. I called my wife. Keep in mind that she and I had been married for all of three weeks at this point. I tried to tell her the news, only I couldn’t get the words out. I was scared. I couldn’t comprehend what this meant. Was I dying? Would I need chemotherapy? Would I lose my testicle? Could I ever have kids?
I won’t dwell on the details of my surgeries and subsequent recovery. Shortly after my diagnosis, I had an orchiectomy. A few months later, I underwent a retroperitoneal lymph node dissection (RPLND), which revealed that my cancer was confined to my testicle. I went home. I rested. I recovered. Eventually I went back to work and got on with my life.
Looking back, I was lucky. I was so lucky. I caught my cancer early. I avoided the dreaded chemotherapy. I had two successful surgeries and two amazing doctors. Some are not so lucky. Some face a physical battle that makes my situation look like a walk in the park. My struggle was overwhelmingly mental. From the moment I was told “you have cancer,” the mind games commenced. I assumed the worst. The negativity creeped in.
The nights were the worst. My wife would fall asleep and I would lay beside her, wide awake, with my brain firing on all cylinders. I would think about dying. I would get emotional. I would toss and turn, hoping that my wife wouldn’t wake up and discover that I was far more scared than I was leading her to believe.
After my diagnosis, everyone would say to me “stay positive!” Anyone who has been in a similar situation knows that this is impossible. You cannot stay positive 100% of the time. I’d have good days, where I felt like I could conquer the world. I’d have bad days, where all I wanted to do was stay in bed and feel sorry for myself.
So what do you do? How do you win the mental battle? You surround yourself with positive people. You stay busy. You live your life the best you can. Go to the movies. Go for walks. Hang out with family members and friends. I did all those things.
Maintain an active dialogue with your doctors. Ask them anything and everything you want to know. It’s your cancer, you have the right to know everything about it. Best advice I can give: don’t Google anything about your cancer. Seriously! It’s a bad idea. Once you fall down that rabbit hole, you’ll eventually find misinformation and worst case scenarios and you’ll frighten the crap out of yourself. Slowly, you’ll learn how to live with your cancer shadow following you around. Things will get easier. Your mind will begin to filter out the negative and embrace the positive.
I’m writing about my story for two reasons. For one, I do it because facing those old fears and feelings are good for me. If what doesn’t kill you makes you stronger, then I am undoubtedly stronger now than I was before my diagnosis. Everyday life struggles aren’t so intimidating anymore. I’m not so quick to feel sorry for myself about things that ultimately don’t matter. Having cancer sucks. Finding things out about yourself in the face of cancer doesn’t.
I share this story also to help anyone who is battling testicular cancer. They say males as young as 15 years old can develop the cancer. 15! I can’t fathom being in high school and dealing with the things I dealt with as a 29 year old adult.
Let’s face it. Most of us men aren’t exactly open and communicative in the first place. We play things close to the vest. Compound that with a disease that affects our testicles, our “manhood”, so to speak, and you have a situation most men are afraid to talk about. If I hadn’t confided in my wife in that hotel room in Greece, who knows how long I would have waited before consulting a doctor.
It’s 2016. In case you haven’t noticed, cancer is everywhere. It doesn’t discriminate. It doesn’t wait for your next check-up at the doctor. You have to be proactive and pay attention to your body. Don’t be afraid to check into your health. Don’t assume you know best what’s going on inside of you. If caught early, testicular cancer can be treated effectively.
One day cancer will be beat. I firmly believe that. Too many smart people are working on this problem. Too much money is being thrown at the issue. There will be a major breakthrough one day. Until then, the only effective defense is awareness. Those of us who are survivors should make it our mission to inform and educate. All cancers are worth the conversation. However, considering how common it is for certain men and how soon it can strike, there is no reason why testicular cancer shouldn’t be at the forefront of the conversation.
As of today I am cancer-free. I’m just now getting to the point where I can look back at my journey and understand what it means. I hope thousands of people read this and share this, but that’s probably not realistic. I hope it does some good. Whether it comforts someone battling testicular cancer or inspires another to consult a doctor, then it was worth my time.
My name is Jason Greenspan, and I’m a Stage IIA Non-Seminoma Testicular Cancer survivor.
My story started back in May 2012. I was only 18 and in my senior year of in high school. I already applied to colleges and got accepted to many of them. The one I chose was Shippensburg University. I had just finished planning for my prom. In my friend group, I’m usually the one who plans everything! Planning for this was fun, but also a challenge. I already had the limo reserved, the schedule made, and was ready to have the time of my life; but little did I know that my life was going to change in an instant.
Testicular Cancer is one of the most common cancers in men between the ages of 15 to 35, yet there’s almost no awareness of it.
I was at home, watching television and had a simple itch. That itch ended up being the most important itch of my entire life. I noticed something hard—something I didn’t remember feeling before. Clearly, something wasn’t right. It’s difficult to describe, but I had this gut feeling that it was something horrible. I never had had that feeling before—ever. I went upstairs to my mom and told her. She said to try not to worry too much about it, but she’ll make a doctor’s appointment anyway. Within a day or so, my mom and I went in for my doctor’s appointment. He checked me. Then, he said the words that I never thought I would hear; “YOU HAVE CANCER.” There was so much running through my head. Being diagnosed is something that I never thought would happen to me! I tried my best, but a couple of tears ran down my face anyway. Without knowing about this type of cancer, the first question I remember asking him was, “How long do I have?” I started to remember random events in my life, from when I was a child, up until that moment. I wanted to cherish those memories—I feared there wouldn’t be many more.
After reading more information about Testicular Cancer, I quickly realized that it’s one of the most curable cancers out there. I was lucky in that regard, but sometimes others aren’t.
Now, I had to start thinking about my treatment. After having an ultrasound and taking many blood tests, I met with my urologist, and he told me that I needed to have surgery. I never had had surgery before. I was terrified. I remember dreading that day! Luckily, I was able to come home later that same day. That helped me a little, but not by much.
The morning of my surgery, I went to the hospital, got checked in, and sat in the waiting room. My family was with me as well: my grandparents, mom, uncle, stepdad, and step-brother. It was incredible to have all the support that I had! Luckily, the surgery didn’t take long. I couldn’t wait to get home!
So now, after having my surgery, I thought that everything was okay, and my nightmare was finally over! It turned out that it hadn’t even started. After taking many more tests such as X-rays, CT Scans, and general checkups, it turned out that cancer had spread past my one testicle. At this point, I had to think of further treatment.
I had to meet with many oncologists until I found the one that would be the best fit for me. The one I chose, though, is phenomenal. He told my mom and me what will be happening and how to move further with my treatment. At this point, I needed to have chemo. I couldn’t believe it. The first thing that I think of when I hear the word “chemo” is hair loss. I couldn’t imagine losing my hair. It’s something that had always been very important to me, and everyone who knows me knows that. That was my biggest fear of the entire experience, well, in the beginning at least. I found out that I needed to have nine weeks of chemotherapy.
My first day of chemo was okay. I remember walking in, sitting in the chair, getting hooked up, and asking my mom, “This is it? Chemo won’t be hard!” I later found out that this statement would be far from the truth. Yeah, the first day wasn’t terrible, but that was only the first day.
The entire chemo experience is something that will haunt me forever. I would go into chemo each day during the first week, one day the second week, and one day the third week. That was considered one cycle. My treatment consisted of three cycles. On the first Friday of each cycle, I would throw up. Since I knew this would happen, it at least helped me to prepare by taking medicine, but throwing up was now my biggest fear.
Towards the end of my chemo treatment, I needed to have a lot of pricks from the needle each and every day I was there. I could have up to 6 pricks on a bad day, but it was still usually 2 or 3 pricks even on a good day. Unfortunately, this happened because after having chemo for so long, the nurses were not able to get a straight path with the needle, compared to before. I remember one day when I was sitting in the chair, the nurses were trying to get the needle in my arm for me to receive my treatment, and it was so bad that it must have been at least eight times! All I kept thinking to myself was “Why me?” That day was the only day during the entire nine weeks that I cried, at my treatment facility at least. The only thing on my mind was going home and having this terrible nightmare be over.
All of the nurses at my treatment facility were wonderful! They were very kind and caring people. They were not able to see me much, though. Whenever I went into the chemo room, I would always put my hood from my sweatshirt over my head—far enough so that my entire head would not be visible. By doing this, it helped me so I wouldn’t be able to look around, which got me sick. Every time I would see an IV bag or a person in one of those chemo chairs, my stomach would start to hurt. I joked after the fact, that if I went to visit the nurses after I was feeling better, they probably wouldn’t even remember me because they were never able to see my face!
The entire cancer experience has let me meet many amazing and inspiring people. I was able to meet other cancer survivors, caregivers, and other people who have been affected by cancer in some way.
For men, it’s crucial to perform monthly testicular self-exams. Sometimes there are no present symptoms, and you might not have any pain. If you notice any changes or have any concerns regarding your testicle(s), contact your doctor immediately.
Let’s help cancer patients with just one penny at a time, and STAMP OUT CANCER now!
[Check out Jason’s site Stamp Out Cancer Now]
During Joe Biden’s announcement that he would not be running for president in 2016 he stated,
“And I believe we need a moonshot in this country to cure cancer. It’s personal. But I know we can do this. The president and I have already been working hard on increasing funding for research and development — because there are so many breakthroughs just on the horizon in science and medicine.”
His statements and vigor about increasing cancer research funding during his last 15 months in office were great to hear. However, was this just rhetoric or, based on his past 81 months in office, are his intentions and efforts futile?
In 2008, The Obama-Biden Plan to Combat Cancer promised to double federal funding for cancer research focusing on the National Institutes of Health (NIH) and the National Cancer Institute (NCI). But, this has not occurred, as funding of the NCI has not shown growth since 2003.
In my opinion, funding for cancer research is plain scary. Five years ago, I made a post about how U.S. consumers spend more on Halloween than the NCI does on cancer research. Unfortunately, it appears that the gap is getting worse.
According to the National Retail Federation (NRF), Americans are expected to spend $6.9 billion on Halloween this year. In contrast, the NCI’s budget for fiscal year 2015 was just $4.95 billion.
It is impressive that, as consumers, we spend more on candy and costumes than the NCI does on cancer and cures. The NRF estimates that 157 million Americans will spend an average of $74.34 on Halloween this year.
Perhaps the power of the people’s purse is the approach that is needed to properly fund cancer research.
If President Obama and Vice President Biden have really tried in earnest to double cancer research funding for the NCI for almost 7 years and failed then perhaps our tax and political system have failed us as well.
Why don’t we try a different approach?
What if, as the people, we were given a $100 tax rebate if we can document a $100 donation to the NCI each year?
Now, that would be “an absolute national commitment to end cancer as we know it today” as Mr. Biden mentioned was needed in his announcement.
We the people have paid our taxes and elected our officials based on the promises to increase funding for cancer research and yet our efforts via those avenues have failed. Let us decide to fund cancer research. Let us crowdfund our tax dollars to the right place and put an end to this scariness.
Thanks for Reading,
MyGratefulSelf is an online program designed to enhance well-being and promote positive emotion in young adults with advanced or metastatic cancer.
We are currently seeking volunteers between the ages of 20-39 to help test the program.
The study is entirely online and can be done from anywhere – no travel is required! For more information, head over to the study website: www.mygratefulself.org. There, you can learn about the study in detail and fill out the interest form.
You can also contact the research team directly at email@example.com
My name is Alexis Johnson and I am a doctoral student in the Department of Communication Studies at the University of Nebraska-Lincoln. My research centers on health communication processes, and I am conducting research that I hope will improve our understanding of supportive communication between social networks and family caregivers of patients with cancer. As someone who has provided care to a patient with cancer, I am interested in conducting research that is aimed at better understanding the memorable, supportive messages that are shared with family caregivers in cancer. You may access the survey at the following links:
To participate: Participants in the states of Nebraska and Alabama must be at least 19 years old or older to participate, participants in the state of Mississippi must be at least 21 years old to participate, and participants in all other states must be at least 18 years old to participate. If you meet these requirements, and are a current or former family caregiver of a patient with cancer, and have 20-30 minutes to complete an online survey, you are eligible to participate in this important research.
Alexis Johnson, M.A.
Primary Investigator Secondary Investigator
Alexis Johnson, M.A. Jody Koenig Kellas, Ph.D.
Dept. of Communication Studies Dept. of Communication Studies
University of Nebraska-Lincoln University of Nebraska-Lincoln
Phone: (708) 772-2626 Phone: (402) 472-2079
Thank you so much for your consideration. My goal is to help people cope more effectively. I’ve dedicated my life to helping others who are going through or have had to go through this experience.
A group of researchers at CeRGAS, the Centre for Research on Health and Social Care Management of Bocconi University, Milan, Italy, invite you to participate in the project we have developed together with Helsinn Group: “Mhealth for improving quality of life: enhancing cancer supportive care”.
We would ask you for your cooperation to complete our short survey, which you can find at the following link:
A Family After Testicular Cancer Is Possible
My name is Dennis Kochis. I am 37 years old and a testicular cancer survivor. My diagnosis occurred on April 25, 2012, but to tell the true story I need to back track a little. The year 2012 was starting out amazingly. I was recently promoted, I was engaged to be married to my now wife, and my New York Giants had just beat the Patriots to win the Super Bowl. Also, I was set to head to Boston for my bachelor party with my friends, brothers and father to watch the Yankees take on the Red Sox and some good old fashion guy’s time. Sounds like a story out of a movie doesn’t it? Little did I know what was about to happen when I returned from Boston.
The Monday after my bachelor party I was working from home. I was sitting at my computer when I started to get a blunt pain in my left testicle. It wasn’t uncommon to be sore in that area after long drives, walking or standing a lot, and under normal circumstances I would’ve ignored it as I’d done in the past. But this time was different. Why? Well, a few weeks earlier on Easter night, I was in bed and grazed my testicle to feel a bad pain shoot through it. Like most men, I ignored it, chalked it up to playing with the kids and must’ve gotten hit there. I never considered checking myself. Testicular cancer wasn’t discussed when I was growing up. We weren’t taught in school about it and to check. I heard about it from Lance Armstrong , Tom Greene and John Kruk, but never thought it could happen to me, so to check never crossed my mind. As I sat at my computer that day, I realized this doesn’t seem like a coincidence, so looked up how to check myself. I gave myself a screening and felt what seemed like a large lump on the side of my left testicle. I already had a physical scheduled with my doctor the next day, so I figured I’d tell her and get checked there.
As I sat in my doctor’s office, I had all types of thoughts going through my head, always going to the worst scenario for some reason. Much to my relief, the doctor told me she didn’t think it was serious by where it was and how it felt. She thought it was a harmless fluid sack that could be drained. The doctor ordered an ultra sound and gave me an urologist to visit. I went for the very uncomfortable, cold and embarrassing ultra sound of my testicles and slept soundly that night.
The next morning when I woke up to go to the urologist (which I never even heard of until this btw), I received a call from my doctor saying – it’s amazing I can quote this word for word – “I got the ultra sound results and was expecting to see fluid, but didn’t. Worst case scenario, this is cancer, but it is treatable. Dr. Rosen will tell you more.” My stomach sunk, and I was never so nervous for a doctor’s appointment in my life.
The urologist came in, gave me a quick test (which has become a norm in my life now), sat back in his chair, and uttered those dreaded words, “This type of tumor is cancer.” Cancer. There is that word again, but now it’s reality. I didn’t even know what to say or do. I’m three weeks from my wedding and was just told I have cancer. I asked the doctor to get my fiancé in the waiting room. She came in and I cried. As he went through the next steps of what will happen, my head was spinning. I was about to lose a testicle, I may need chemo or radiation, what if it spread, what if I can’t have kids, am I going to leave my wife a widow right after we are married? It was the scariest and most emotional moment of my life. The emotions continued as I informed family and friends. As hard as it was for me knowing I had cancer, making it harder was the fear in my fiancé and families faces. I was scheduled for surgery the next day. At this point it was still unknown if the cancer spread, but all I kept thinking was I’m a guy about to lose a testicle.
After my surgery, I struggled mentally. The change to my body. The fear of if the cancer spread (a question that wouldn’t be answered until after my wedding). I remember the first time I felt the prosthetic in my body I had a complete meltdown and anxiety attack. But thanks to my wife, family, friends and a great set of doctors I was able to manage through this time. My wedding day came and for the first time cancer wasn’t on my mind. A week later I was back at the doctor. My marker results were in and there were no signs of cancer in my body anymore! The surgery was enough and now it was time for the monitoring phase. I started to see an oncologist whose first words to me I will never forget: “Testicular cancer, when caught early, is not something we hope we can cure, but it’s something we CAN cure.”
As the next year progressed, I was at the doctors constantly for check ins, catscans, and x-rays, which made it difficult for me to mentally get a grip. Each visit was lead with fear of bad news. That was until June 2013. Why? Because that’s when my wife came out of the bathroom and told me she was pregnant! The joy, relief, happiness and emotions I felt at that moment were so overwhelming. I can’t even describe it. A year removed from having my testicle removed, a year of stress both physically and mentally, lifted by the fact that I was going to be a dad!
Today I’m three years removed from my surgery. While I still have my moments of stress, mainly at doctor visit time, I am in a great place. I am 100% cancer free and a husband and a father. In fact, we are expecting our second child as I write this. I am thankful that I had a pain and checked myself; I caught the cancer early, and because of that, surgery was enough to rid the cancer out of my body and allow me to produce a baby naturally and have a second on the way. Every minute I look at my son, I am thankful I gave myself that test and I am thankful for the wonderful doctors and amazing people I have in my life to help me get through this. Early detection is the key. Most men don’t feel pain and testicular cancer can be an embarrassing subject to young men. But I will always make sure my son, my nephews, and my cousins all know to check themselves regularly, and if they find something, get it checked because, like me, if you find it early you can live a long “normal” life.