March 29, 20173 Comments

A Shout Out to the Caregivers: You Are Doing a Good Freaking Job

Sadly, there is no manual or guidebook for when your husband receives a testicular cancer diagnosis.  Did you even know what testicular cancer was? Did you know that it preys on men ages 15-34 years old?  Your world is suddenly flipped upside down and there is not a darn thing you can do about it.  You feel completely and utterly helpless.  Maybe you cry yourself to sleep, maybe you are in shock, or maybe you keep everything to yourself. You never imagined yourself in this role - you were just married and enjoying life as a newlywed, but now he has cancer and everything is different.   The days to come are filled with uncertainties.  But, you are absolutely certain of one thing: you will do everything in your power to provide unrelenting love, support, and grace to ensure that your partner, a newly deemed cancer patient, is comfortable and taken care of.

In your new role as caregiver, you schedule appointments, provide transportation, pick up prescriptions, feel helpless as he wakes up from surgery in searing pain, watch in horror as he retches for hours after chemo, you shed tears behind closed doors. And you worry.  You worry about everything.  Are you doing enough to support him? Has the cancer spread? Is the treatment working? Can we have children? Will he live?

You feel completely alone.  Your peers are having babies and buying homes because that is just what you do when you are in your mid-twenties.  Getting through the day and making sure your husband is okay is the priority now.  All other normal life events are put on hold.  Your new reality includes things like researching fertility options, figuring out how to pay for the mounting medical bills, waiting for this nightmare to be over while just trying so desperately to hold it all together for the two of you.

Caregiving is a double edged sword.  Sometimes the grief and pain of watching your spouse suffer is almost insurmountable, but then again, you would never trade a minute of holding his hand during a scary doctor’s appointment, standing vigil by his bedside on a rough night, fetching ice cream because his appetite is back after losing so much weight.   There are moments of beauty in the chaos.

And with the bad days, there are good days, there are the milestones: the joy in his face after receiving news that the latest scan indicated no more cancer, when you learn that cancer did not rob him of his chance to be a father and you are expecting, when the scans continue to come back cancer free year after year.

And then all of the sudden the storm is over, and he is healthy.  He is okay.  But you, how are you? Did you get the chance to process everything and handle it, or are you a holy mess? It is okay to not be okay.  Maybe it has been days, months, or even years since the diagnosis and you are still trying to figure out how to adjust to this post-cancer life – there is no timeline for coping.  Cut yourself some slack.

And while every cancer experience is different, take comfort in that fact that there are more resources out there than you can imagine for patients, survivors and caregivers. You are not alone – there are other people out there that just get it.  Reach out, seek help, and talk to someone.  In the trenches of caregiving, do not forget to take care of yourself.  Get a pedicure, drink wine on a Tuesday, go for a hike - do you. You cannot pour from an empty cup.  When doubt creeps in on the bad days and you question if you are doing enough to support and comfort him, just remember one thing, there is no manual to caregiving and you are doing a good freaking job.

July 18, 2016No Comments

Another Life Change

Jeff was over a year cancer-free. The poking and prodding of tests went down to every other month. He didn’t need to see his surgeon regularly anymore. We had gotten used to our new normal. Then, our lives changed again.

Jeff had the opportunity to take a post in Nairobi, Kenya. It would be a great career move for him. He had lived in Nairobi before and was happy to move back. He wanted to do this. So, we talked about it.

I did a lot of research on my end in terms of my career. I would be fine. Nairobi is a tech capital — Silicon Savannah, as it’s known. Between remote work and independent consulting, I would be fine. Plus, there were opportunities to work for firms there. I gave the go-ahead from that standpoint.

We went back and forth on whether or not we really wanted to leave New York, where we had lived for over 20 years and very much our home. We weren’t sure. We kept talking about it. At some point during the conversation, I happened to ask what Jeff’s oncologist had to say.

Jeff hadn’t mentioned it to him. I blew a gasket. I told Jeff that moving was off the table unless he got approval from his oncologist.

Wait a minute…what happened to his body, his choice? This felt different to me. This was a decision that would affect both of us. Yes, of course, such a move would affect us both regardless of health. But, on top of that, if I needed to be a hands-on caregiver again, then this would really affect me. At the time, in New York, I had my support system in place. In a new city, I would have to start over.

Then I started to worry. We were fifteen minutes away from Memorial Sloan Kettering Cancer Center. We had everyone Jeff needed at hand. Did we want to move away from that?

Then again, did we still need to be so close? Was it time to let go of that crutch? Was it time to move on? After a little bit of agonizing, I decided it would be best to let the doctors determine that.

Dr. Feldman, Jeff’s oncologist, gave the go ahead. Jeff had been doing really well and all things looked to less and less chance of recurrence. He recommended that Jeff get his primary cancer care at The Aga Khan University Hospital in Nairobi, a world class hospital. Jeff would never stop being a patient at Sloan. He could keep them abreast of everything.

He just needed to continue the regimen of monitoring. It would be less and less frequent, but it would have to continue. It could be managed perfectly well in Nairobi. It was okay to move there.

With that cleared, I started to shift my mindset. Yes, of course, Jeff’s health came first. But, it was time to realize that things were better now. It was okay to move on. Life is meant to be lived.

We moved to Nairobi in August of 2015, right after Jeff hit the two year cancer free mark. Jeff found a great urologist at Agha Khan and he checks in with him regularly. Everything has been good.

We made a trip home to New York in March of this year. Jeff got checked out at Sloan. Everything was still good.

 

Jumping over quicksand in Hell’s Gate National Park, Naivasha, Kenya.

We’ve been here almost a year now, we’re getting close to what we hope will be the three year cancer free mark.

In this past year, other than finding a doctor and the routine tests, cancer has not been top of mind. Instead, we’ve been settling in and exploring Kenya. We’ve hiked along Mount Kenya, gone on game drives, lounged on luxurious beaches, and hiked through gorgeous landscapes. We have indeed moved on and are having some amazing adventures.

We’ll stay vigilant with the observation. But, we can focus more on living.

July 14, 2016No Comments

Adjusting to the New Normal

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Jeff was out of the woods and we were going to back to normal life…sort of. Things were good and getting better and better. We were both the same people we were before cancer entered our lives. Yet, everything was different.

The stress of the last few months, my temporary nocturnal working life, and my mind and body being on constant alert took a toll. I couldn’t sleep. I had trouble focusing. I was often irritable. I felt terrible.

What I needed, what we both needed, was a break. I didn’t feel I could really ask for one. I felt guilty about taking off time from work. Jeff also felt that he needed to be back and physically present in the office. We would have to wait on a proper break.

In the meantime, even if I couldn’t get away for a while, I still needed to sleep. My body needed to be relaxed enough to sleep and it just wasn’t. I felt as though I couldn’t get off of high alert.

I went to my doctor and got some Ambien. After about 10 nights on Ambien, I was able to sleep normally again. It took that long to reestablish a normal sleeping pattern. But, it did return to normal.

One thing that didn’t go back to normal was our relationship with many friends and colleagues. Cancer became the top agenda item for every conversation. Not everyone focused in on it, but a great many did.

“How is Jeff?,” said with gravity and an intense look in the eyes.

He’s doing really well. Thanks for asking. By the way, he’s more than this disease. It’s not the main thing in his life anymore.

I don’t resent people asking about it. I just wish it wasn’t the first thing they thought of when thinking about Jeff. Even now, three years later, it still happens from time to time.

Running into people we hadn’t seen in a while was awkward. Some people, who knew, who would pull me aside and tell me how shocked they were by Jeff’s weight loss. People who didn’t know would outright remark on the weight loss. I had to quietly urge people to not say anything because 1. Jeff was very self-conscious of it, and 2. He had actually gained back some weight and had stabilized. (His body structure is different now, much more lean.)

As we meet new people, we tend to not bring it up. Sometimes, it does come up. If Jeff and I are together, it’s not a big deal. If it’s just me, it’s still not a big deal, but a funny thing happens.

People get a weird look on their faces, and I can tell that they desperately want to ask me something but know they shouldn’t. I take pity on these people. I answer the question they dare not ask.

Yes, everything works. We’re all good with our sex life.

Things were shifting back to normal but cancer was still ever present. Jeff was going in every month for check ups, alternating between his surgeon and his oncologist. Getting poked and prodded became a standard part of life.

Also standard was the extreme care with his dietary restriction. It shouldn’t be that hard to make sure there are no seeds, nuts, whole grains, or anything with a husk in food. However, it was trickier than we realized. For example, Jeff would order seared tuna and then would have to double check that it didn’t have a poppy seed coating (even if the menu didn’t mention the coating). We learned to always double check and ask, ask, ask.

Outside of that, our diet didn’t change. We had always been healthy and active. Some people, before Jeff got sick, even thought of us as too healthy and active. It was a nice bonus to have the “health freak” label taken off of us. We could enjoy our leafy greens and our workouts without judgment.

After a few months, we finally took our break. We went on a week-long beach vacation and relaxed. We even did a little SCUBA diving. I’m happy to say that the diving was fine — there were no issues for Jeff post-surgery in terms of being in the water or at depth.

 

Finally on a break! Scar is healing well.

We did wonder if anyone would notice his scar and ask about it. On that trip, no one did. On subsequent dive trips, some people did. No one asked about it. If anything, there was a sort of respect given. Obviously there was a surgery or trauma and obviously Jeff came through it all right. He got a sort of street cred (boat cred?) for it.

By the time Jeff hit the one year cancer free mark, we were well settled into our new normal. Life was different from before, but it was good.

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July 12, 2016No Comments

The Recovery Period

I did my best to prepare for Jeff’s recovery. The biggest concern I had was food. Jeff was going to be on a very restrictive diet for the first two weeks. He was limited to a vegetarian, minimal fat diet (maximum of five grams of fat per day). How in the world was I going to swing this?

Our friend Bernadette, a trained chef, came to the rescue. She put together meals for the both of us during that time. The meals were fat free, varied, and delicious. Thanks to her, I didn’t have to worry about what to cook and Jeff was able to eat real food instead of JELL-O. To say that we were both grateful doesn’t even begin to cover it.

The other big thing on my mind was work. I was over most of my initial fear, but I was still a little worried about how work would factor into things. I laid things out for my boss. I told him that I would need some time off at first and then afterwards I would have to work from home for about six weeks. I didn’t think he’d have a bad response, but I wasn’t sure how things would play out.

There are no words to express how thankful and appreciative I am for how he handled it. There would be no issue. We worked at a technology company with flexible hours. I could do what I needed. The situation wouldn’t be hidden from people, but it would also not be advertised. It was easy enough to accommodate my need to be home without it being considered a special circumstance.

It didn’t have any impact on my career. I am so grateful for this. I know that most people do not have such a luxury.

Having set up all this ahead of time, the next thing I needed to do was make sure the apartment was ready. Overall, this wouldn’t have been a big deal…except for one thing. The air conditioner broke down a couple of days before I expected Jeff home. Dealing with the July heat was not going to be an option for Jeff. I needed to get a new air conditioner ASAP. I moved heaven and earth managed to get the new one installed just in time — the morning before he came home, in fact.

Everything was in place. He came home. The caretaking began.

For the first month, he mostly rested. He got up to do his walks. He watched a lot of Netflix. But mostly, he slept. He was still in pain, his body was healing, and he was so tired.

Evening were tough. That’s when his digestive system would protest and he would be in more pain. There wasn’t much I could do help. Worn out and then extra weary from the digestive pain, he was asleep again by 8 pm and out for the night.

Night was when I did most of my work. I did bits and pieces during the day, fielding emails and some reviews. The bulk of it, however, was done in the evenings. I became a nocturnal professional. I was on a project with our Singapore and Chennai offices and I accommodated their time zones. Plus, I wanted to keep my days as open as possible so I could care for Jeff.

I didn’t need to do too much. It was mostly picking up things that were too heavy for him and getting things he couldn’t reach. I took care of all the housework. I made sure he was comfortable and didn’t need anything. And, I did it all a bit too much.

I was hovering. I treated him as though he was fragile, which he was. He needed me to stop constantly checking on him. He appreciated everything I did, but I was also getting on his nerves.

We talked about it and came up with a code word. When I was hovering, he would say “chicken fingers.” I’d back off. No explanation or conversation needed. This worked well. He didn’t feel bad about telling me back off. I didn’t feel bad about backing off. Chicken fingers. It’s still our code for “honey, please back off.”

During this time, Jeff asked me to tell people that he didn’t want any visitors. He was still recovering and sleeping most of the time. He wanted to rest. I let people know this, and let them know it was Jeff’s request. Still, I had to field off people.

At this point I was no longer trying to be polite. I simply replied “no” to emails from people wanting to visit. I told our doormen that we had a no visitor policy. Only people we approved ahead of time could come up — and that was only for Bernadette bringing us food. They did have to turn away some people who came by unannounced, but at least I didn’t have to deal with it.

I had anticipated needing to continue my role of Gate Keeper. People were concerned and really wanted to see him. I understood this. I was aggravated, and I didn’t like being the bad guy, but I understood.

What I had not anticipated was the deluge of fruit baskets. Yes, fruit baskets. It was like an invasion.

Repeatedly, I let our friends and family know that for various reasons, including the tight space constraints of a one-bedroom apartment and Jeff’s strict dietary restrictions, food and gift baskets should NOT be sent. (We suggested making a donation to The Ronald McDonald House instead.) Still, we got close to a dozen fruit baskets.

I took every single one to the soup kitchen down the street. Fruit baskets are heavy. I never want to see another one in my entire life.

Another thing I didn’t anticipate, but should have, was the reaction from our neighbors. Over the course of the week after the surgery, Jeff lost a lot of weight. He was gaunt. He looked tired (because he was). He looked very ill. People noticed. I should have told more people ahead of time so they wouldn’t have been so scared for him.

Various neighbors, the dry cleaner, the people who worked in the delis, the guys in the corner wine shop, all pulled me aside to ask if Jeff was okay. They were shocked at his appearance and they were very worried. I let them know what was going on.

Once people knew, they were so helpful and supportive. When you live in a city, you live your life rather publicly. When you live in a city like New York, each neighborhood is like a small town where people care about each other.

The people in our neighborhood really came together as a community and supported us. I now had even more people on call for whatever we needed. It felt like a much needed security blanket.

 

Scar, 4 weeks after surgery.

Time passed and Jeff got better bit by bit. We got the lymph node and spermatic cord pathology back and the results were good. Everything came back clean. No signs of cancer. Jeff would not need chemotherapy.

His scar was healing well. He was awake more. He was walking better. He was doing great in terms of recovery.

On week six, I went back into the office for a couple days that week. Jeff did fine on his own at home. The next week, we were both back in the office.

We were ready to start going back into normal life.

July 11, 2016No Comments

The Surgery

In the weeks and days leading up to the surgery, Jeff had a lot of prep work to do. There were more tests and lot of insurance matters to settle. He also had to set up medical leave from his job, which I am happy to say was quite generous. Meanwhile I did my own prep work.

I knew that I would need to ask for help. I reached out to everyone I knew. I cast the net so wide; I didn’t even have the right to contact some people as I had been out of touch for so long. Despite any long lapses in contact, almost everyone responded.

On top of that, we had a lot of support from the people in our building, from our friends, to our neighbors, to the doormen. Key people knew what to expect and how to help us. We were not going into this alone. With all that support, with Jeff’s mother coming up for the surgery, and with all the prep work we had done, we were as ready as we were going to be.

Meanwhile, the surgery was scheduled for two days after Jeff’s birthday. I wanted carve out some time in which we wouldn’t have to think about cancer. I wanted him to have a night off to relax and enjoy himself. We were able to go out for a nice steak dinner right before the pre-op dietary restrictions kicked in.

As it so happened, we sat at a table next to two oncologists. So much for a cancer-free night. We did talk to them a bit and it was actually helpful. There is something about running into an oncologist in normal life setting (not in a hospital) that is comforting.

It was fun night, even with the upcoming surgery on both our minds.

On the day of the surgery, Jeff’s mother and I dropped him off at 6:30 in the morning to be prepped for the operation and then we began our wait. We expected the surgery to run four to six hours…a very long time.

We both had books. I also arranged to have friends stop by at various intervals. I knew we’d go crazy otherwise, just sitting there worried. Having people come by — not staying the whole time, just a quick visit for maybe a half hour or so — really helped. It broke up the waiting time.

I also had some knitting with me to keep me occupied. This was another thing I had planned ahead. I went to my local yarn store to get yarn to knit some chemo caps. I walked in on the verge of tears, or maybe in tears, and asked for help picking a good yarn for the hat. As it turned out, there was an oncologist there. It gets better; she went to college with my husband’s surgeon for the RPLND. They are friends and colleagues.

Once again, there is something comforting about oncologists out in “the wild.” The encounter made things seem more hopeful, less clinical, and more about life than death. On top of that, knitting is a very therapeutic hobby. In this case, it also helped me by pulling me to the right people just when I needed them most.

Back in the waiting room, I was ready with my yarn at hand. Being a little bit superstitious, I decided to knit Jeff three chemo caps. The idea was that if I knitted a chemo cap in preparation, then he wouldn’t need chemo. Doing three was more a matter of fidgeting and keeping my mind from traveling into dark places.

The first hat, side one.

Side two. I think my opinion on cancer is clear.

 Finally, we got the news that surgery went well and that he was in recovery. Also, we got some good news, the preliminary pathology results were clean, which meant most likely he would not need chemo.

After a couple hours, we finally got to see him, but only for a few minutes. He was still unconscious but stable enough for us to see him. We would not be able see him again until the next day, and even then it would be limited.

The next few days, I would work from home for a couple hours in the morning while Jeff’s mother tried to relax. Then we would go see Jeff for maybe 10–15 minutes. We’d then eat lunch at the hospital and then go back up around 3 to see him again for another 10–15 minutes. That was all he could take.

The scar on day two.

Recovery was hard. The incision was big, covering half his torso. It was really long and the staples looked scary. But was clean, precise, and healing very well. He was in a lot of pain for days. When we would see him he was coherent, but very worn out. To keep the lungs healthy and to prevent pneumonia, he was woken up every hour to do the breathing exercise. He also had to get up and walk at regular intervals to help the healing process.

There were days when he felt absolutely wretched. Seeing him like that was hard. Also hard were a number of well wishers who kept asking me if they could come by the hospital to see Jeff.

I had told people ahead of time that we would not be having visitors. I explained that people who go through this surgery are in a lot of pain, really worn out, and visits put a physical strain them. It didn’t matter. I got daily calls, emails, and texts from people.

“I really want to see Jeff.”

It’s not about you. He doesn’t want to see anyone. Did I not explain this before?

I kept saying no and tried to be as calm and polite as I could.

I had to be a rigid gate keeper. I know that there are people who are still angry with me about this. However, I don’t for a minute think that I should have let people come. His mother and I were the only two people Jeff wanted to see, but even that was for short periods of time. He still couldn’t handle more than 15 minutes at a time. I wasn’t going to let anyone create undue stress.

Happy to go home soon.

However, most people understood and gave us the space needed. Overall, people asked what they could do and didn’t assume anything. Many others put themselves “on call” for whatever was needed. This covered everything from shopping errands, to coming by to spend time with me and Jeff’s mom in the evening, to helping with our pug.

Jeff got a little bit better each day. On his seventh day in the hospital I stayed with him in his room the whole day. We chatted off and on. I did some work from my laptop. At the end of the day, the doctor said he could be discharged the next day.

Our friend Brian had been “on call” for the assignment of helping me bring Jeff home. Brian still laughs about it, saying that he didn’t do much. In truth, he made the difference between Jeff coming out safe and sound and minor disaster. Having someone there to help with bags, with doors, hailing a cab, and helping Jeff in and out of the cab was a tremendous help.

Once home, the long recovery period began.

July 7, 2016No Comments

Deciding On A Course Of Treatment

Jeff’s diagnosis of Stage 1 testicular cancer came in early June of 2013. We spent the next few weeks frantically researching and speaking to doctors.

Thankfully, we lived very close to Memorial Sloan Kettering Cancer Center, number two at the time in the entire nation for testicular cancer treatment and world-renowned. We had the best oncologists and surgeons at hand. After sharing the news with some friends, I learned that a colleague of mine also had testicular cancer and had been treated successfully at Sloan.

Even though we had all the reviews and data on the best cancer centers, having the personal connection really made me feel better. Logically, it didn’t make sense. However, the thought I had was, “If they could save him, then they can save Jeff.”

They did further pathology testing at Sloan and we learned that Jeff’s condition was Stage 1b non-seminona. Stage 1b meant that there was cancer in the blood vessel. (The blood vessel was removed along with the testicle back in June during the orchiectomy.) In short, the tumor was even more aggressive than we had thought and we were hoping it hadn’t spread farther. We would have to act soon.

We did do some research on our own but mostly we relied on Jeff’s oncologist at Sloane to guide us on our decision. Dr. Feldman was thorough, patient, and very helpful. He walked us through all the options. He didn’t rush us but he did stress the time factor.

I was ready to take charge and declare an all out war on cancer. I was over my qualms about my career — that ended once we got the complete diagnosis. I was ready put aside life as I knew it and do whatever it took to keep Jeff alive. I needed to step back and slow down.

It wasn’t my body. It wasn’t my disease. It wasn’t my outcome.

It was Jeff’s body and his decision.

I did tell him my opinion, but I stopped there. I let him take the time he needed to figure out the right decision for him. We did discuss it together as a couple. But it had to be his decision. And it was not an easy decision.

Working through the options was complex and nerve wracking. Our choice were observation, surgery to remove the abdominal lymph nodes or chemotherapy. What was the right one to pick?

Everyone has to make the right decision for himself, and it is different for everyone. I am not promoting one course of treatment over another. I simply want to share how flummoxed we were as we made our decision. This is what the situation was for Jeff in 2013.

The chances of recurrence with observation was 50–50. And, if the cancer did come back or show up elsewhere, it would require 3–4 rounds of chemotherapy. We were not comfortable with that. So, it was a decision between surgery and chemo.

Jeff’s chemotherapy option involved one or two cycles of a three-drug combo: bleomycin, etoposide and Platinol® (BEP). The recurrence rate of cancer with getting the cycle of BEP as treatment was 3–4%. Much better odds, but chemo came with many risks, especially for testicular cancer. If Jeff wound up needing three or more rounds in the long run, the risk for secondary cancer and heart disease is high. This was not something either one of us saw as a good first option.

I’d like to make a side note: We are SCUBA divers. Because BEP scars lung tissue, SCUBA would be out of the question if Jeff had picked that option. He factored that into his decision making. I was furious that he was even thinking about diving. I couldn’t understand how he could factor that in.

Again, it was his body and his choice. I told him that I didn’t care if we never went diving again as long as he was still with me. I left it at that. Thankfully, we didn’t need to have that argument as there was another option.

Retroperitoneal lymph node dissection (RPLND) was the third option. The procedure is an intense and invasive one. In the long run it had the least side effects. But, the odds of recurrence with this option were complicated:

  • If they did not find any cancer then the rate of recurrence would be 5%
  • If they found a little bit of cancer, then it would 15% , which was still good odds and Jeff could go to observation only at that point.
  • If they found a moderate amount of cancer, then the chance of recurrence is 20% and the next thing do to is 2 rounds of chemo, but not BEP.

Does your head hurt yet? Mine sure did, as did Jeff’s. It was so hard to do the math and figure out the best approach. The worst part was the realization that so much of medicine is really about playing the odds.

As we went through our decision making process, we had a number of people play doctor via Google, offering unsolicited “advice.” I don’t know how to convey how upsetting that was. I know people want to do something, anything at all, but feel helpless. I know that people need to be able to do something to help them cope with the news. Still, it was terrible to have to field the suggestions.

What I wanted to do was tell these people (not a single one a medical professional) that what they were doing was disrespectful and disconcerting. Did they think we didn’t or couldn’t do our homework? Were they suggesting that they knew better than the team we chose? How could these people second guess our choices? How on earth did they think their Google search results were going to give us something more useful than top medical advice?

At least it was only a few people. I did not share my true feelings with any of them. Instead, I politely replied to each person, letting each know that we were going to trust Jeff’s doctors, especially since they were world class medical professionals. That nipped things in the bud.

I didn’t tell Jeff about any of that until after he made his decision. He was grateful for that. He didn’t want that additional stress while making his decision. (Little did I know that would be my first foray into playing Gate Keeper.)

In the end, Jeff decided, with my full support of course, to go with RPLND. We had been leaning toward this option and Jeff made the final decision to go for it because was the best course of action for him. In the vast majority of cases, his type of cancer (embryonal carcinoma) often spreads via the lymph nodes. The goal was to try get it all out before it could spread.

It was a big, important, difficult decision. It was going to be an even bigger, more important, and more difficult surgery. It would take a lot of preparation, both physically and emotionally. We started to prep.

July 5, 2016No Comments

The Initial Diagnosis

Cancer came into our lives out the blue. There were no signs. There were no symptoms. We discovered it out of pure dumb luck.

My husband, Jeff, went to an urologist for a vasectomy. He had the usual exam. The doctor felt a lump. He didn’t think anything of it but suggested an ultrasound just to be safe. This was the week leading into Memorial Day Weekend in 2013.

We went to a friend’s wedding that weekend. We danced, we drank, we caught up with friends. We had a wonderful time. We didn’t know that would be the last fun weekend in a very long time.

Jeff had the ultrasound the Tuesday after Memorial Day. That’s when everything changed. The urologist was very concerned about the ultrasound and Jeff went through a ton of blood work and some x-rays. That week was filled with tests. By the end of the week, we were scheduling his orchiectomy of the left testicle.

That first surgery went well. The waiting afterwards, to validate that it was cancer and to learn what form, was brutal. With Jeff’s go-ahead, I went on a business trip for a couple of days. (We figured it would be better to go about life as normal while waiting rather than putting everything on hold and making things harder on ourselves.)

That kicked off my selfish phase. I was, of course, very worried about Jeff. He was top of mind. But I also worried about how this would affect my career.

I had just started a new job that same week before Memorial Day. My second week at work I learned that my husband very likely had cancer. I didn’t know what would happen next. I would lie awake at night wondering all sort of things.

How do I take care of Jeff when I’ve just started this new job? I have not yet built up a reputation at this job. How is this going to work? Legally I need to be given family medical leave time, but is this going to hurt me in the long run? Will I take a hit for caring for my family as many other women have? How horrible of a person am I for thinking these things when my husband’s life in the balance? I am a terrible human being.

I kept all that to myself. In fact, I haven’t admitted this to anyone before. This is the first time I’m sharing this.

I did tell my boss what was going on with Jeff (but not about how I was feeling). I told him that we were waiting to see what happened next. He was very supportive, which helped.

Meanwhile, I kept a brave face. I was a strong, successful, professional woman. I was not going to show any weakness in the office. I would fake bravery as I figured it out.

I faked bravery at home too. I didn’t want to do anything to make Jeff feel worse. He was waiting to find out if he had cancer and I didn’t want him to have to take care of me. Falling apart was saved for discrete, time-boxed moments when no one would see me.

Looking back, I know I wasn’t really selfish in worrying about work and my career. Even if I had not just started a new job, the professional impact was a very valid concern. I also know that I didn’t need to bottle everything up. I could have reached out more to friends.

At that stage, I found it hard to reach out because I didn’t know enough yet. We didn’t know for sure if it was cancer. Although we were 90% certain it was, maybe it wouldn’t be. And in that case, did Jeff want me to share what was going on? Very few people knew at that point and I didn’t feel comfortable reaching out.

Then we got the diagnosis. It was definitely cancer. The good news is that it was Stage 1. If Jeff hadn’t gone in for the vasectomy consultation right when he did, the story would have been very different. Any earlier, the tumor might not have been present. Any later, it would have spread already.

It didn’t feel like good news at the time, nor did it make us feel lucky. Now it does. I am not a religious or even marginally spiritual person. But the timing, catching it right at Stage 1, how things worked out…if that wasn’t a blessing then I don’t know what is.

The bad news was that the tumor was non-seminoma. It was a very aggressive form of cancer. We would need to make some decisions very soon.

April 16, 20154 Comments

A Letter from Erica Bergman, Wife of a TC Survivor

April is Testicular Cancer Month and we wanted to share with you a story from a wife reflecting back on her husband’s testicular cancer experience.

My husband and I were in our first year of marriage, adjusting to married life: who does the dishes, takes out the trash, walks the dog, how to blend families and share space, all were challenges married couples face. He was also in his last semester of law school in Houston getting ready to take the bar exam. We had a list of things to accomplish that year, finishing law school, moving back to Austin, taking the bar, passing the bar, and finding a job. The last thing on our mind was cancer. Cancer wasn't on our list of things to do.

Shortly, after we were married, my husband started to notice a lump on his left testicle. He saw a family physician in Houston and it was dismissed as a cyst. A few months later he noticed it grew, but in the midst of studying for the bar and moving back to Austin, he put it off. Within 6 months it grew from the size of a small pea to a pecan. He saw another family physician in Austin and this time he was referred to see an urologist. The urologist recommended a scan of the testicle area. We received the results in a few days. I knew my husband had a follow up appointment with the urologist. This was a Monday, a beautiful, sunny Fall day.

He called me at work and asked me to come home - the tone in his voice was serious and he needed to speak to me. I couldn't wait until I got home to hear what he had to say, of course, and I asked him to tell me immediately. He said the doctor thinks he has cancer; the scan showed a mass and he was scheduled for surgery to remove his left testicle the following Tuesday. I remember the worry in the way he told me; I told myself to be strong - it was one of the most surreal conversations I’ve ever had. I left work a mess and cried and cried on the car ride home, wanting to get it all out before I saw him. I felt guilty for not being there in person but who would've ever thought this would happen to him.

I arrived home and we hugged each other, cried, cursed and cursed some more. There wasn't anything else we could do at that very moment, we didn't know anything, there was only the waiting. Not to mention, how would his family and friends react? How would we tell everyone? It was met with confusion - cancer? They would say, ‘But he's so young, he works out, he's healthy’. My younger sister asked - Why? I wish I knew why. My husband is a former Marine, about to be an attorney, I knew he was going to fight this.

Tuesday arrived and my husband was prepped for surgery. This was the first surgery he'd ever had and he was nervous to be under anesthesia. It lasted less than 2 hours from the moment they wheeled him away and him waking up in recovery. I was surprised that they released him to go home as soon as he was able to wake up. He was happy to be able to recover in the comfort of his own bed. It wasn't hard to keep him in bed since he didn't have much energy to do anything else. The cut was made just under his waist line so sitting up was a chore. A week after the surgery I drove him to his post op appointment, this was the big one, the one they would tell us what type of cancer the tumor was. The doctor informed us it was Stage 1 and it had not spread to other areas of the body. The best news we could receive. It gave us the answer we were looking for and determined the next steps he could take. During his recovery time he also received word that he passed the state bar exam. It was the highest of highs and the lowest of lows. There was something more important to focus on.

The oncologist gave him a choice, he could do nothing but have the surgery. He could have chemotherapy or radiation and lower the risk of the cancer returning. He was a good candidate for radiation and he began his treatments about 6 weeks after having the surgery. My husband was lucky; he only needed 10 treatments (one every day for ten days). Of course, he was the youngest guy the oncologist was treating at the moment, mostly elderly men seeking treatment. That really put things into perspective for him. He could do this! The radiation left him fatigued and he experienced discomfort in his stomach. It was hard to watch someone you love and care about suffer each day but he was doing this so he had a fighting chance at life. By the end of the treatments he was literally sick of it. It took him a few weeks to feel more like himself and have the energy to be active again.

It was rough watching all of this unfold before me. It's been a little over a year since my husband started radiation treatment and I look back to those weeks and think how on Earth did we do it? I couldn't possibly tell you back then what I would learn from it all. We learned that sometimes my husband just needed the confidence to know that someone was there for him, that we wouldn't treat him any differently, that he was still the person he is, and that patience whether in a lobby of doctor's office or waiting for test results goes a long way. This was one of the hardest things I'm sure we'll have to go through but we came out on the other side stronger because of it. Early detection saved my husband's life and I hope my story can motivate someone to do the same, get them checked.

 

-Erica Bergman

Austin, Texas

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12600 Hill Country Blvd, Suite R-270 Austin, TX 78738 • info@tcancer.org • 855-390-8231

© 2017 Testicular Cancer Foundation, a 501(c)(3) registered nonprofit | Privacy Policy