Off to College with Cancer – Adam

It’s 2011, I’m 19 and planning to head off to college in at the end of summer. Only thing standing in my way was my left testicle. Who would have thought?

At first sign of the lump I just brushed it off. Being a typical 19-year-old guy I didn’t think anything of it. Not like I’m going to bring it up to my parents, who wants to talk about their balls with their mom and dad right? Well I let the summer pass with increasing painfulness in the site. It got to a point where it constantly felt like I had just got hit in the groin a few minutes earlier, so the week before I move away to school I tell my mom about it and we go to an after hours clinic to get it checked out. The doctor there referred us to a urologist in town and we went the next day. After a quick feel, he brought my mom back into the room with us and delivered us the news. It was what we had feared but had been too afraid to mention it.

The earliest I could get in to get it removed was the weekend after I moved away to school. We had hoped all they would have to do was lop it off and I’d heal for a week or so and be back to normal. But of course it’s never that simple. After I woke up from the surgery, they informed me that it had spread and that I’d have to drop out of school and go through chemo. Not the news I wanted to hear.

They let me heal up for a few months and I started the 10 worst weeks of my life just after (Canadian) Thanksgiving. It was a cycle of 1 full week followed by 2 weeks of one treatment per week. There were 3 cycles (+1 week where my platelets were too low to treat me). The hospital was a 3 hour drive so my full weeks were spent at a family friend’s about a 50 minute drive away. I would wake up at 7am to make my appointment with my chair and chemical cocktail at 8. As a guy who likes his sleep, waking up at that time was painful enough.

It wasn’t until about the 6th or 7th week where my hair started to fall out. This was more so humorous than scary as we were expecting it. Instead of cutting it short and letting it fall out, my buddy and I though it would be a good idea to get rid of it all, razor and everything. Bad idea, that hair is still tough even when it’s falling out, and its damn cold in Canada in November. This began my months long stint of toque wearing. At this point of the treatment I was as out of it as I could get. I woke up feeling awful, spent the day feeling awful, and going to bed feeling awful, knowing it was only going to get worse the next day. I had hit a new low. It was all I could do to keep getting up to go get injected with chemicals. But I knew there was going to be an end to it, and that finally came.

That was it, chemo was done, the tumors were gone, I was cancer free. Or so we thought. A few weeks had passed, it was Christmas time, all my friends were back in town and I was starting to seem like my old self again. We took a trip down to the hospital to get the all clear when they told us that that particular type of cancer (Teratoma) hadn’t responded to the chemo. So basically those weeks of utter hell had been pointless. I was livid, I was scared, I was so dejected. That was it, I broke down. If I hadn’t been so damn stubborn at the start and had gotten it looked at earlier this all could have been avoided, I thought to myself. They described the next step to me…they were going to open up my stomach from the sternum to below the belly button and lift all my insides out of me and place them on my chest while they took out a whole bunch of lymph nodes in my back. As you could imagine, this was pretty extensive surgery. The recovery was the most painful thing I had experienced. I basically had a two-foot opening down my front that had to heal, as well as let all my insides recover from the shock of being removed from their host. (The intestines don’t like that). After over a week in the hospital, they finally sent me home to rest, and do nothing for 6 weeks, which turned into 8 weeks, which turned into who knows how many. I got so bored, I was just longing to go outside and do SOMETHING, ANYTHING without it hurting.

After all these weeks passed, I slowly recovered and got back to full health. I kept going for routine CAT scans and X-rays, and they kept coming back clean. Its been 3 years since the start, and I am happy to report that I am still clean and cancer free and will be graduating college in 4 months. It was an incredible experience, and I know that I have truly learned so much from it, about myself, my friends, my family and the compassion of others. I’m a stronger person for going through it and I wouldn’t be the same person I am today.

Joe’s Story

Hello All!

My name is SSgt Joseph Connell, I go by Joe. I have been in the Air Force for over 8 ½ years as an Evaluator Aerial Gunner on the AC-130W gunship. My job requires to care, maintain & load ammunition for the 30MM gun, AGM-176 Griffin missiles and GBU-39 small diameter bombs. I also instruct/evaluate the safety of crewmembers. I have been deployed 8 times (3 to Iraq, 5 to Afghanistan). During my last deployment (August-November 2014) is when I was diagnosed with stage 2A non-seminoma testicular cancer. The tumor actually ended up being 70% carcinoma 30% seminoma.

Towards the end of October, I noticed the left testicle was a bit larger than normal and didn’t think twice about it since I figure I pulled something in the gym or just pushed myself too much. After about a week, it began to become uncomfortable, didn’t hurt just annoying since it was so large. It could fit in the palm of my hand and was hard as a rock. I decided it was time and went to see my doctor. They had diagnosed it as varicose seal, which is a simple inflammation or blockage on the left side. This is very common because the vein that runs from the left side to the kidney makes a weird 90-degree turn and younger guys get this a lot. After 2 weeks of the swelling going back and forth, I went back to the doctor and they said it would take time to heal because of being on my feet and working out but if it doesn’t get better after another 2 weeks they told me to return. After another 2 weeks, it began to hurt in my lower left abdomen so I went back to the doctor and they took me to the ER in Afghanistan where they did an ultrasound.

After the ultrasound was completed, the tech left and came back a few minutes later uttering the famous words, “the doc needs a second opinion.” This was November 16 2014. I had the doc come in and tell me what he was thinking and he said he thinks it was cancer because no normal tissue was visible. Because of this I was sent to Germany to see an urologist who immediately, after just seeing it, diagnosed it as cancer and that night I was omitted into the hospital for surgery. The next day, November 17 2014, I went into surgery to remove the tumor. After arriving back to the states the day before thanksgiving, I have seen an urologist and oncologist where I will begin chemo on January 5th because there was spreading to my abdomen and a small spot on my lungs.

The whole time I have kept a positive attitude because my wife and 2 daughters need me along with my family. Stay strong and keep a positive attitude and I will be glad to help anyone that needs someone to vent to. Please contact me at jd11088@yahoo.com

Paying it Forward – Pete Aguilar

Husband and father of two young girls, 32-year-old Pete Aguilar, knew nothing about testicular cancer until March 7, 2014.

In fact, the first thing he learned about testicular cancer was that he had it. This ambiguity made the initial diagnosis a lot scarier. The first question that crossed his mind was if it was terminal. He automatically thought about his family. The second question was whether or not he would be able to pay for it. Pete and his wife both work full-time and without his income, they would struggle to stay afloat. His diagnosis put him out of work for about 4 months. His treatment became a full-time job. With his mom by his side, Pete spent 6-7 hours Monday thru Friday receiving chemotherapy.

He endured two surgeries because the cancer spread to his liver, luckily though it did not continue further on to his brain. It never occurred to him that the cancer even could spread because the name implies that it is an isolated disease.

During treatment, Pete was overwhelmed by the support of his family and friends. Without his loving wife, co-workers, and core group of high school buddies, treatment would have been much more difficult. His wife, Genell, organized a food calendar so that the pressure was lifted to cook meals for the family throughout the week and the guys from work helped out with their yard work. Often these small tasks are overlooked, but for Pete, they really made the difference. “For a guy,” as he said, “it is difficult because you still feel like you have to take care of your family.” In addition, every text or kind word he received gave him the strength to keep fighting.

It can be tough to discuss testicular cancer with your male friends because guys show their emotions and support in different ways. For this group of friends, hosting a golf tournament to raise money for the medical expenses accrued throughout Pete’s treatment, was their way of showing support. The golf tournament was held in partnership with Sacks of Love at the Druids Glen Golf Course on September 20th, boasting 80 golfers and raising over $9,000 for the Aguilar family.

Pete, “didn’t expect it,” it was somewhat of a surprise for him, seeing so many supportive people playing the sport he loves and ultimately joining him in the fight. This network that grew around Pete is one that he hopes to continue and offer to other testicular cancer fighters. After reaching out to God, Pete truly believes that he was chosen for a reason to endure these hardships, so that he can now “pay it forward.”

Cancer: The Journey – Rob Taylor

While at work in September of 2013 I encountered a young woman wearing a t-shirt with the statement F- -K CANCER. I asked her about her connection to the t-shirt and its profound statement. She said cancer had taken the life of a dear friend of hers. I responded with an apologetic “I’m sorry for your loss” and said that I, and many others could likely relate to her feelings and loss. Little did I know that very evening I would begin my own personal journey with cancer. 

Before drifting off to sleep that evening I noticed an abnormality on my left testicle. It had a hardness similar to a walnut shell, and my mind immediately began racing. I made an appointment to see a doctor the next day, and she in turn referred me for an ultrasound the following day. During the ultrasound I had an overwhelming feeling that something was definitely wrong. The ultrasound technician said it would take one or two days before they’d have results. I drove home and my phone rang within 90 minutes. It was my doctor apologetically saying the ultrasound revealed 3 lumps. Needless to say it was a lot for my wife and I to take in. The doctor said time was of the essence in situations such as this and that I would be seeing a urologist very soon.

Upon the conclusion of the exam the urologist said there was a 5% chance it was benign and a 95% chance it was cancer. While this was difficult to hear and mentally process, he offered encouragement in saying that testicular cancer is very treatable and the survivability rate is very high. The urologist sent me to a lab for a blood draw and two days later I was in surgery undergoing a radical inguinal orchiectomy. Just prior to the surgery the urologist said the lab results from the blood sample revealed an increased level of beta-hCG. This suggested that I had a seminoma type of testicular cancer. The surgery was an outpatient procedure that involved an IV, an incision, and approximately 3 days (in my case) of resting and essentially taking it easy. I’m an avid cyclist and was told to stay off a bicycle for 4-6 weeks. 

The pathology results came back within a few days of the orchiectomy and revealed a stage 1 pure seminoma cancer. I had a CT scan and post-op exam one week after the surgery, and was then referred to the cancer center for oncology. The oncologists presented three options. Option 1 was surveillance, which involved regular CT scans, blood work and monitoring by a physician. Option 2 was radiotherapy (radiation), 17 treatments in my case, and option 3 was chemotherapy. After many weeks of prayer, petition, and thoughtful consideration, I elected to go with radiotherapy.

Upon consenting to radiotherapy I underwent a simulation phase where x-rays and CT scans were taken to identify the locations they would be treating. The radiation technicians marked the various areas, and covered the marks with a clear tab. The oncologist prescribed an anti-nausea medication that was taken prior to each session. Each of the radiotherapy sessions took approximately 10 minutes, a few sessions were slightly longer due to additional x-rays to mark progress. The actual treatment wasn’t painful, but the side effects left me with an overall blah feeling. The side effects included lethargy, stomach cramps, loss of appetite, and constipation. The side effects from the treatment began to dissipate approximately one week after the final treatment. I am now monitored by an oncologist, which consists of an annual CT scan and routine blood work. 

Throughout the treatment and to this day I’m reminded that it could have been so much worse than it was. The urologist said it was likely the cancer had been present for approximately 6 months prior to discovery. I was extremely fortunate that it was caught early on, as I know others who’ve been diagnosed with later stages of cancer, and seen what they’ve endured with multiple rounds of chemotherapy, blood transfusions, spinal taps, etc. 

Cancer & Faith:

For me, cancer has been an eye opening, perspective shifting, faith building, blessing in disguise. To be faced with one’s own potential mortality is a lot for anyone to take in. I initially experienced fear, anxiety, many restless nights, and a flood of emotions & tears as I tried to process and cope with the hurdle (cancer) that laid before me. 

My Faith:
I was raised in a family that attended church. I was God fearing, but did not understand the notion of a personal walk of faith until many years later. Prior to cancer my personal faith was best described as lukewarm. I believed in God, and accepted Him as a co-pilot, but I was ultimately in control (or so I thought). It was extremely frustrating and tiresome because I so badly wanted consistency in life, my faith and walk with God, but I didn’t know how to break the lukewarm cycle I was in. For me, cancer was the vehicle that brought about heart transformation in faith and a newfound life perspective. By relinquishing control and placing complete trust in Him, I’ve begun to experience greater faith, joy, perspective, forgiveness, and grace than I ever could have imagined. 

I’ve also begun to see the beauty in things I never really paid much attention to before. Trivial things in life that once caused frustration, anger or anxiety are now viewed for what they really are, trivial. I’m learning daily that life is about perspective, faith, and hope. 

Thank you for reading.

Sincerely,

Rob Taylor

P.S. If you have any questions or comments, it would be an honor to correspond with you via email: rjtguitars@yahoo.com

The Diagnosis – Tim

No patient likes to hear its cancer yet we see this ambiguous word everywhere. It’s mentioned during smoking P.S.A.’s and scrawled across multi colored ribbons. There may be someone in our lives who had cancer or a tumor or one of the many forms of leukemia. There are so many different kinds of cancer and different stages that we just know it as cancer. So when I was told I had a tumor, I was confused.

Deep down inside I knew it was cancer but I tried to deny it. I still asked all the questions hoping it wasn’t. I was trying to wrap my head around what I heard. I had originally gone to the E.R. at the urging of my general practitioner for my groin pains. After testicular contortion and STD’s were ruled out, they ordered a sonogram. I still had a brave face, cracking jokes, still hoping that it wasn’t cancer but by that point I knew. When the doctor told me they found a tumor on the sonogram I was still optimistic. He didn’t say cancer and I thought tumors were just black lumps that could be removed with surgery. You hear about people having giant tumors removed all the time. I still hadn’t quite understood the gravity of my situation.

I questioned the doctor dancing around the obvious until I finally bluntly asked, “so this tumor is cancer, like the kind that spreads”. “Yes”.

The doctor was nice enough to give me a moment. I lay there silently crying trying to compose myself. The doctor tried going over what the next steps were but I just wanted to get the hell out of there. I would use the same line the doctor used when I called my parents and broke the news to them, that it has a high survival rate. I called my close pals and they came to the hospital to bring me home. I spent almost 8 hours in the hospital to find out I had cancer. I just wanted to go home and I had a long road ahead of me.

The Balls Don’t Make The Man – Aaron Fullerton

You know how on the internet, people tend to have civil, thoughtful conversations that articulately express varying opinions? Oh wait, whoops! I’m not thinking of the internet. I’m thinking of… nowhere. Nowhere is where those conversations happen.

Earlier, I spotted a tweet from a charity organization that focuses on cancer among young adults. It said “Testicular Cancer [Patients]: avoid the horrors of an orchiectomy” and linked to a story about a fish that’s known to nibble on swimmers’ testicles. To really put a hip, millennial spin on the whole thing, they ended it with the hashtag “#ZOMG.” There was no actual information related to cancer or orchiectomies.

I bristled as I read the tweet, and not just because I don’t know what the hell that “Z” in ZOMG stands for. It frustrates me when, of all places, a youth cancer charity reinforces the stigma that an orchiectomy – or the surgical removal of a testicle – is a “horror.” You know what I remember from my orchiectomy? Getting wheeled into the operating room while the anesthesiologist blasted the new Rihanna album. I had two balls. I fell asleep. I woke up about an hour later. I had one ball. I iced my groin and started this very blog. Nothing about it was a horror.

I know, personally, of young testicular cancer patients who are ashamed of their diagnosis. They feel that losing a testicle is a direct blow to their masculinity. They also worry about the pain; when the surgeon describes the process and uses words like “clip” and “slice,” how can you not? About the latter, I’ll say: it’s kinda sore for like six hours. Granted, that’s my experience, but I haven’t talked to anyone who experienced any kind of extreme or lasting pain from his orchiectomy.

About the former, I’ll say this: No one cares about what’s in your ball sack. Clint Eastwood could have one ball and McLovin could have four and we’d never know. Because no one asks. Because no one cares. My singular ball doesn’t make me less of a man. If anything makes me less of a man, it’s the four years I spent watching Felicity.

I wrote an episode of television and watched it air. I proposed to my girlfriend. I can now bench press more than ever before in my life. And I did it all with ONE BALL. We can’t keep enforcing the idea that losing a ball is some deeply painful, emasculating process. That’s no different than telling the cancer it’s winning. An orchiectomy is a simple procedure that saves your life. We – testicular cancer patients and our loved ones – should feel lucky that it’s so easy.

I tried, in 140 characters or less, to express all these thoughts to the person behind the organization’s twitter account. They told me it was just a joke and that I should be able to laugh at myself. I got semi-justifiably defensive. I had to simplify my thoughts so they’d fit in tweets. So did they, I’m sure. Everything was poorly communicated. Stupid internet.

I have no doubt that good-hearted, smart, sensitive people run the organization’s account and I commend them for the good work they do. Removing the stigma from testicular cancer, though, is a topic about which I’m very passionate. Sorry if I came across as testy.

Here is link to Aaron’s full blog of all his experiences and thoughts, we really appreciate him letting us use some of his post to share with all of you. http://aaronlaughswithcancer.tumblr.com