Diana’s Story Block

Ugh, I can still remember the afternoon in 2002 that I first felt the lumpy, hardness of my husband, Bobby’s, right testicle. The discovery was surprising. The realization was terrifying. Obviously, something was not right. Not long after that discovery he had a right inguinal orchiectomy. And for those of us that don’t speak in medical terms, which is most of us, that means the doc removed Bobby’s right ball. It was cancer. Who knew that a guy’s nuts could try to kill him?

I can remember doing as much research on Testicular Cancer (TC) as I could. I read just about anything that popped up in the search results when I Googled “Testicular Cancer”. It was a scary time and I needed to know as much as possible about this type of cancer. I quickly learned that even though it is the leading form of cancer in males between the ages of 15-44 (but can strike at any age) it is also considered a rare cancer. The reason that the “rare” part is important is because some doctors can go their entire career and never see or treat a TC patient. What this meant was I had to find a doctor that had TC experience. Luckily there was a great website for TC that listed some TC experts throughout the United States.

We got the pathology report and it showed that Bobby’s tumor was a non-seminoma mixed malignant germ cell tumor. His tumor consisted of several different types of cancer: seminoma, yolk-sac, embryonal carcinoma, choriocarcinoma, teratoma (both, mature and immature). Bobby had blood work the day of his surgery to check tumor marker levels. They were initially elevated but repeat checks over the following weeks showed his numbers were dropping and returning to normal…which was a great sign that the cancer might have been contained to the testicle that was removed with no further spread. A CT scan of his pelvis, abdomen and chest was normal…no sign of enlarged lymph nodes or further tumors. The local doc was recommending chemo. We didn’t have a lot of faith in him so I got busy and wrote a letter with the details of Bobby’s situation along with the pathology results and faxed it to one of the experts on the list at UCSF. He recommended that I schedule an appointment with a urologic oncologist there at UCSF. So off to San Francisco we went. The doctor we met with at UCSF explained our options. Bobby could undergo two cycles of chemo, a very invasive surgery called an RPLND (retroperitoneal lymph node dissection), or surveillance. There were some other health concerns at the time that were unrelated to the TC so we ended up choosing surveillance.

The years following his TC diagnosis in 2002 were difficult. The emotional scars and anxiety that cancer leaves behind can be damaging. I’m sure I don’t have to describe this in detail for any of you. You’re all here because you get it on some level. I never really thought too much about the emotional affect that having one testicle could have on Bobby. I was just thankful the tumor was out of his body. I didn’t think about how much some guys feel that part of their manhood is defined by the two balls hanging in between their legs. To me Bobby was just as much of a man, if not more, than before his TC diagnosis and removal of ‘ol righty. I’m sure not every guy feels this way but Bobby did. He felt a shame that I wasn’t able to understand or relate to. He felt a loss that wasn’t easy for him to explain to me. In my eyes he had won. He beat it! Yes, I worried quite often and didn’t tell him that I feared a recurrence. He shut down and became distant. I felt we should be thankful that he was still here. He felt I didn’t understand what it meant for him emotionally to lose a testicle. The mind tricks that played out in his head of being half the man that he used to be did a number on him for years. I felt that way of thinking was ridiculous…he was still here to be able to live his life and he was still every bit the man he was before! In hindsight we each didn’t handle it in the best way possible. I’ve thought about it since and feel guilt that I didn’t fully recognize what the loss of that body part meant to him. The importance of it through his eyes. Or how scary it was for him to have his mortality challenged so openly with such an ugly disease like cancer. I know I was scared but I was in “rescue” mode and couldn’t let myself think about his mortality…I always attacked this from a “you will beat this” mentality because the alternative was too much to bear. But, of course, his mind was thinking, ‘Am I going to die? Is this going to kill me?’. My mind was thinking, ‘You are absolutely not going to die’. I think about it now and ponder, ‘How would I feel if I had lost a boob? Would I feel like less of a woman?’ and of course there’s no way to truly know how you’re going to feel about something until it actually happens to you…but, if I’m being honest, my answer would be yes, I do believe I would feel like less of a woman…even though that doesn’t mean I would be. I wish I could have been more understanding of this back then. I wish he could have expressed how he felt to me more effectively. Basically, we both could’ve communicated better…which is not so easy to do when emotions are high. I was just too busy focusing on making sure he got the tests he needed when he needed them and that we followed the surveillance schedule that was given to us. But we persevered and got through that dark part as best we could.

For seven years Bobby was on surveillance. He had labs to monitor tumor markers and CT scans to check for enlarged lymph nodes and/or spread. The tests were done more frequently the first few years and less frequently the last few years of surveillance. In 2009 we were pretty much told surveillance was no longer needed and given an all clear. Bobby was considered cancer FREE!!

We were feeling pretty comfortable at this point, believing he was cured and that TC was in our rear view mirror. Other than occasional reminders from me to perform self-exams each month on his remaining testicle and reassurances from him that he was, we felt fairly confident that his journey with TC was over. Of course, I do feel once you’ve had a cancer diagnosis there’s always that lingering, nagging fear deep inside that never escapes you. For both the survivor and co-survivor.

Now fast forward to 2016. That lingering, nagging fear I described became a reality and we were faced with a TC recurrence. WTF!! Almost 14 years later! A PET scan that Bobby had done for something unrelated to TC revealed an enlarged lymph node that lit up on the scan. Once again local docs didn’t know what they were talking about. A local urologist that has practiced medicine here forever and is well respected took a look at the PET report and handed it back to us and said it was nothing. He told us not to worry about it because Bobby was too far out from his original diagnosis for it to be a recurrence. And we found ourselves, yet again, not trusting the medical advice we were given. We traveled to UCSF for a second opinion. No better luck with that doctor…grrr. He didn’t offer us anything that made us feel like we got clear answers…and neither one of us felt like we trusted this guy to perform the type of surgery that would be needed to remove the lymph nodes (RPLND). So I found myself in research mode again. I joined a TC email list group and a couple of TC Facebook groups and asked lots of questions of the TC community. I got more answers from the amazing people in these groups than we did from any doctors we had met with. And it seemed that the overall consensus was that I needed to get in touch with Dr. Einhorn, a top TC oncologist in the US and a TC expert, at IU in Indianapolis. Dr. Einhorn developed the chemo drug combination cure in the 1970’s for TC, which at the time had an overall 5% survival rate. A TC diagnosis back then carried a mostly fatal prognosis. The survival rate for TC today is over 90%. Dr. Einhorn is a legend, a blessing and has saved too many lives to count. Since it had been almost 14 years since Bobby’s initial diagnosis it was best to get a third opinion from the top TC expert to find out if this was a very late recurrence and treatment options. I emailed Dr. Einhorn with questions including medical history and some records on a late Friday afternoon and was surprised to see an email in my inbox from Dr. Einhorn early the next morning, on a Saturday, when I woke up. Wow! The guy is a legend and is still very busy practicing medicine and emailed me back that quickly…amazing! Dr. Einhorn’s response was that it was an easy decision for him and that Bobby needed to undergo a standard RPLND. Ugh…so many emotions going on! While we were thankful for and completely trusted and intended to follow Dr. Einhorn’s advice, we were also terrified. I had a few more questions and so exchanged some more emails with Dr. Einhorn. Bobby and I quickly began putting a plan together to travel to Indianapolis from California so that he could have the RPLND surgery performed by Dr. Foster, a top surgeon in this field and a colleague of Dr. Einhorn’s. It was a very emotional and anxiety ridden few weeks before the surgery.

I had never flown before. Yup, that’s right. I was 47 years old and had never flown before. I’m actually terrified of heights and have always had a fear of flying. I’m also claustrophobic. The thought of being that high up in the air and in a confined space that I couldn’t get out of if I needed to left me feeling panic-stricken. I knew I had to make myself get on that damn plane but I hadn’t quite figured out how I was going to accomplish, what seemed like such a small thing to most people, felt like a monumental feat to me. My fear over the cancer and the surgery Bobby was going to have surpassed my other fears and I got my ass on that plane…that along with a little pharmaceutical drug called Valium. My sis-in-law came along for moral support. Initially we thought the surgery was going to have to be pushed out and rescheduled because there wasn’t an available hotel room within a 50-mile radius due to the Indy 500…everything was booked solid. I was able to work with a hospital social worker to secure lodging at a local foundation hospitality house and we proceeded with the original surgery date. The founder of the house is amazing and so is the work she does.

We met with Dr. Foster the day before surgery for the pre-op appointment. He went over the surgery and answered our questions. Bobby cracked a few jokes with the doc but also expressed his fear. Dr. Foster said he would be concerned if Bobby wasn’t scared and that it was a normal feeling. Before parting ways with Dr. Foster, Bobby asked him to be sure to watch some YouTube videos on RPLND’s that evening so that he’s ready to perform his surgery the next morning…Dr. Foster had a good sense of humor and assured Bobby he would do that. Phenomenal doctor…and also a legend.  After checking in to the hospital the day of surgery we sat nervously waiting for Bobby’s name to be called. We were taken down stairs to the basement…of all places. I remember Bobby joking with the IU staff that the basement is where the morgue is usually located and this wasn’t looking too good for him. Even with all the stress he still cracked his jokes and tried to keep the mood light. He was prepped for surgery and then the time came to be taken in to surgery. Just typing those words right now brought back how I felt when they took him away. My stomach was in knots. I was scared. I choked back tears as they wheeled my guy away, waiting until he was out of sight before allowing myself a brief moment of tears. The only thing that brought me comfort was knowing he was getting the absolute best care by the best doctor and medical team. My sis-in-law and I were taken to a waiting room and we did just that…we waited.

Dr. Foster came out to talk to me when he was done. He said Bobby did well during surgery and that we would wait to see what the pathology report revealed. Dr. Foster told me that Bobby would spend a couple of days in the Progressive Care Unit to monitor him and his breathing a bit more closely because he would be on some pretty heavy-duty pain meds. Bobby’s temp and blood pressure dropped after surgery, so he spent more time in the recovery room while they tried to get it under control before moving him to his room … and before I could see him. I just remember feeling anxious to lay my eyes on him. I knew once I saw him I would feel better.

Bobby was pretty out of it for a few days. His pain level was high. He was saying some pretty crazy things and hallucinating from the pain meds. He saw chickens on my and my sis-in-laws head. He claimed he could hear radio frequencies. He talked to the nurse about the Walking Dead TV show. Just craziness going on in my guys drug filled head. He developed a really bad cough and needed breathing treatments. Apparently coughing is a killer when you have a fresh incision that starts from just below your sternum and down and around your belly button to your pelvic region. Coughing is definitely not cool. I would cover his belly with a pillow and lay my body across it and push down to apply pressure each time he coughed. Walking was really difficult due to the pain and he wasn’t able to do it the first couple of days. I believe day two we got him out of bed and sat him in a chair for a bit…where he claimed he was hearing radio frequencies that were coming from his mouth. Day three he walked the Progressive Care Unit a bit. He was moved out of the Progressive Care Unit to the regular Urology unit once he was taken off the heavy-duty pain meds. He spent five days in the hospital all together. And I spent every night there with him. The findings in the pathology report showed two lymph nodes with 100% pure seminoma. I remember one of the doctors that was filling in for Dr. Foster over the weekend came to see Bobby during his rounds and seemed intrigued by Bobby’s very late recurrence and the pathology findings.

The plan was to stay a couple of extra days in Indianapolis once Bobby was discharged from the hospital so that he could rest before enduring the long flight home. The plan changed once he was actually discharged. Bobby just wanted to get home. So the next day we went to the airport and were on standby for the next flight home. That was a long day. The airport was packed with people trying to get home after the Indy 500. It was crazy! Bobby sat in a wheelchair all day…from morning until that evening…just waiting for a flight. We were about to give up and try to figure out if our room was still available but I decided to give it one more shot and talk to the gate agent…it was a different gate agent than the one I had been dealing with throughout the day. I explained our situation and that Bobby had just had a big surgery and we needed to get home. I told her to please check any flights that would get us closer to home. She was able to get us on a flight to Las Vegas! Bobby had family that lived in Vegas and we knew we could count on them to put us up for the night or if need be, get a room. I was sooo sick that entire flight to Vegas. I didn’t have time to take a Dramamine and Valium before boarding the plane since it was very last minute. I was miserable and on the verge of puking the entire flight. Oh, and I was also coming down with a cold. We got to Vegas, stayed with family and eventually made it home.

I will say this about Indianapolis. Although the reason for going to Indianapolis was nothing to celebrate, the people of Indy were very hospitable and friendly to us. From the people we encountered being out and about the day before Bobby’s surgery to the founder of the foundation hospitality house to the hospital and airport staff…we were treated nicely. Wish we had visited under better circumstances and would have had time to check out the city of Indy. One encounter we had was especially funny. My sis-in-law and I ran out to pick up some food once Bobby was discharged and he was settled in at the room. We decided to try White Castle. We don’t have them in California. We were chatting with the drive-thru person while waiting for our order. We told him that we’d never had White Castle before because there aren’t any where we live. When he asked and we told him where we live his whole demeanor changed. All of a sudden it was like we were celebrities…lol. He told the other employees where we were from and they gathered around the drive-thru window asking us questions. It was so funny. They asked us if we knew or had ever seen certain celebrities…I can’t remember who they asked about now…but it was funny. We got kind of the same reaction from Dr. Foster’s medical assistant. She asked us if we’d ever met Ice Cube during Bobby’s pre-op appointment when she read on Bobby’s chart where we’re from. It was funny because being from California we’re not really conscious of what other people’s perception of California might be. To us it’s just a place that we live.

Bobby’s recovery was tough and somewhat long. Walking helped the most with recovery. I corresponded through email with Dr. Einhorn to find out if Bobby was going to need any further treatment based on the pathology findings. Dr. Einhorn said he felt confident that the RPLND was enough and provided a surveillance schedule to follow for the next five years. So, Bobby is back on surveillance and so far so good. All scans, x-rays and labs have been clear. Yay!

What a journey this has been. I feel that Bobby and I did a better job at communicating this time around. We didn’t do it perfectly but better than the first time. We definitely each had our melt-downs. We had anxiety filled days. And sometimes still do when it’s scan and lab work time. Not sure we’re comfortable yet with the thought that another recurrence isn’t in our future. Cancer can really play some mind games with you. Pretty sure Bobby has accepted the fact that his testicles don’t define who he is as a man. I know it took him a long time to arrive here but I’m glad he did.

Bobby is my superhero…and fighting cancer is his superpower. He is a strong man that has gotten through some very dark days. I admire him for that…and love him even more.

As a co-survivor, it isn’t an easy path to walk and navigate through. I truly believe only other co-survivors understand what it’s like. It is exhausting, scary, emotional, hard and can leave you feeling completely helpless. I wanted so much to be able to tell Bobby that he was going to be okay and to be positive and all that warm and fuzzy good feely stuff…and at times I did say those things. But Bobby didn’t want to hear it. I don’t think a person can hear those things when they’re surrounded by darkness. He was tired of everyone telling him he was going to be okay and to be positive. He was tired of hearing, “Well aren’t you lucky. If you were going to get cancer, TC is the one to get because it’s so curable. It’s the easy cancer”. He didn’t want to hear from me what everyone else was telling him. I think he just wanted me to listen and allow him the space to lose it at times…have his melt-downs…sometimes be the target of all that darkness by arguing about things that we wouldn’t normally argue about to get the anger out. I’m not saying he used me as an emotional punching bag…even though it felt that way at times. It’s one of the unfortunate symptoms of dealing with cancer. But I’ve been known to push back just as hard as I’m being pushed. I had my own head trip going on about it all and had my moments of lashing out as well. It’s easy sometimes to forget in the midst of the shit storm that you’re on the same team fighting for the same thing. Sometimes the darkness can consume you to the point that you say some really dumb shit to each other. And it isn’t until there’s a shred of light coming through that you can realize what an asshole you’ve been. The only thing I can say is that our love and commitment to each other got us through. The rest we pretty much winged it.

I am a 2x co-survivor. I am a co-warrior. My husband is a 2x survivor. My husband is a cancer warrior. My body didn’t fight cancer but my mind and soul did…right beside my husband. My fight was different. I feel a survivor and warrior’s cancer fight is body, mind and soul. I feel a co-survivor and co-warrior’s fight is mind and soul. We try … but don’t always necessarily succeed on a day-to-day basis … to be the rock when our loved one is crumbling and their health deteriorates. While their body is healing from surgeries and cancer treatments and their mind and soul are at war with the cancer demons and fears of facing their mortality, we’re trying to hold it together on the emotional side of things, we’re trying to remember all the information doctors and medical staff are throwing our way, we’re having to sometimes pick up all the slack at home while our loved one is fighting and we’re contending with our own emotional battles…scared and worried for our loved one. Cancer sucks…and you will never be the same person you were pre-cancer…it changes you forever.

Enough of my ramblings. In closing I would just like to say this. Guys, please check your nuts. They might be trying to kill you. Monthly self-exams are important. Ladies, tell every guy you know to check his nuts. This might be a tough and embarrassing discussion for parents to have with a young boy…for the young boy…but it needs to be done. I’ve seen young teenage boys fighting TC. And in some instances they were too embarrassed to tell their parents about something suspicious they find on their testicle. TC is highly curable…especially when caught early. But make no mistake about it…it is cancer and kills like all cancers. While I have no doubt that Angel Warriors are fighting with us all from the other side we must do our part to raise awareness. I’m surprised and confused why pediatricians aren’t educating parents about this. I feel like there should be a TC educational poster or brochures in every boys bathroom and locker room at every school. Still a lot of work to be done in the form of TC awareness. While it’s considered one of the more rare cancers, I can say this…I’ve noticed more newly diagnosed TC guys and/or family members joining the TC Facebook groups lately. I don’t know if that just means more people are reaching out for support or if the number of guys being diagnosed with TC is going up. Thanks for letting me share this part of my story block with you all!