Saturday, August 26, 2017

PCL12: I Lost More Than a Ball... I Lost Time

Something I’ve been thinking a lot about lately is the concept of lost time. Compared to some cancer treatments that last for years on end, four months of surgery/treatment followed by an additional few months of feeling “off” during recovery isn’t too terrible. While I still continue to struggle with the emotional and mental ramifications of experiencing cancer, my life is more or less physically back on track.

This was once the bag I took to chemo...
Now it is my gym bag
Despite this, I have a hard time letting go of the fact that I lost nearly half a year of my life, especially a year that was supposed to be one of the happiest in my life with our upcoming wedding. While I don’t mind lying around watching movies for hours on end (such as later tonight when I watch Guardians of the Galaxy Vol 2 [for the third time]), I like doing that when it’s my choice… not because I have no energy to do anything else.

However, I am not simply dwelling on the time lost and doing nothing about it. I am making changes in my life and making the most of the time I have now that I am healthy. One of the biggest lifestyle changes is a renewed commitment to physical activity and eating healthy. Before cancer (can I just call this era BC?), I was really invested in working out during college. When I moved to Virginia, I kept up with fitness, but once I started my Masters program, I let my healthy habits slip. Though I finished my Masters in 2015, over a year prior to my cancer diagnosis, I did not make a sustained effort in restarting a regular exercise regimen. I would jog for a few days, but it never lasted. I always had an excuse… not enough time, no energy, etc etc.

After experiencing chemo and knowing what it truly feels like to have no energy, I am making fitness a priority (I promise this isn’t leading into a Beachbody coach spiel - I really hate those). I started with doing P90X (still not a Beachbody post!) but decided I needed to do more. I joined a gym and got a fitness plan from Estrella Body Architect, which is owned by the spouse of a survivor (and also has many great shirts available at Courage and a Cure). Sticking with my new habit hasn’t been too difficult. Because I’m paying for a monthly gym membership, it feels like I’m throwing money away each time I make an excuse not to use it, which is a motivator for me to stay committed. I am a few weeks in and am making it a goal to hit the gym every day.

On the topic of money, I am trying to let go of my frugality (or tightwaddedness as my wife says). In the BC time, I was very stingy with money, since I want to be able to retire before 80 and have a good life. Now, I know that life isn’t necessarily guaranteed and we should enjoy the time we have in the present. We went to Hawaii on our honeymoon, and I didn’t stress (too much) about the fact that some meals cost double what we would pay in Virginia. It was about the experience. Pouring money into creating memorable moments is something that is far more valuable than saving it or spending it on random items.

I missed Chris Pratt by six days :( 
The Hawaiian trip was truly that - the experience of a lifetime. I love to travel, and this trip was exactly what I needed. For two weeks, I did not worry about a recurrence or any of the other fears that plague my mind occasionally. We hiked up a crater, drove ATVs in Jurassic World (pictured to the left), swam with dolphins, visited Pearl Harbor, snorkeled in the reefs, and so much more. I embraced every moment of that trip. If you’ve recently ended the treatment part of your journey, take a trip ASAP. You’ve earned it. And if you want to pay me to come with you, I won’t say no.

My new attitude extended into my day to day life as well. Our AC unit died the third day back from the honeymoon and rather than repairing it, we had to replace the whole system, costing several thousand dollars. In the BC era, I would have freaked out about the amount of money we had just spent in Hawaii, but the new me shrugged it off. If I have this time now, I’m not going to worry about things I have no control over. You do not want to be in Virginia in August without air conditioning!

Beyond musing about the lost opportunities from the time when I had cancer , I’m finding I am having a hard time recalling what did happen while I was going through chemo and recovery. November through March is all sort of hazy. I can remember significant elements of the journey, but I can’t remember details here and there. Luckily, I wrote the majority of it down here on this blog and have friends and family to remind me. If you’re a current cancer patient, I recommend writing down your experiences. You don’t need to post it publicly anywhere, but you’ll want to look back and see how much you’ve overcome. They might not be memories that are exactly pleasant, but they are important and will help shape you going forward into your recovery.

Despite losing half of a year to testicular cancer, I look back at this time period to remind me of how far I’ve come and where I still want to go. So here’s to a continued resolution to grab life by the ball(s) and make up for lost time. We only have one life and we need to live it to the fullest (wow, I sound like such a millennial).

Monday, August 14, 2017

PCL11: Six Ways to Talk about Testicles

My last post was all about how talking about cancer can be awkward for those who aren’t experiencing it personally, but talking about testicular health as a survivor can be just as hard. I've also shared about some excuses guys may use to avoid doing a self-exam regularly. The topic of testicles can be considered impolite, even if it’s coming from a place of education. One of the primary goals of ABSOT is to get these “private” conversations out in the open, but that’s easier said than done. So to help, a la Barney Stinson’s Playbook from How I Met Your Mother, I’ve crafted various ways to bring up self-checks and testicles into everyday dialogue, based on some real life experiences.

If you want to go the extra mile, add it to your licence plate.

shirt courtesy of Courage and a Cure - go check out the link!

1. The Conversation Weaver


While mowing my yard a few weeks ago, I saw my neighbor gearing up to do the same. He's about my age, and we've only talked twice. We started chatting about my upcoming wedding and honeymoon. I said something to the effect of, “After facing cancer this year, I really need a Hawaiian vacation.” It was that easy to weave the topic in naturally. Knowing his age put him at a higher risk for testicular cancer, I segued into telling him to do a self check. He looked at me and said, "How? I've never even heard of that."

This anecdote is what sparked this whole blog post. While it was relatively easy to bring testicular health up in conversation, it proves there's still work to do with raising awareness. It's not enough to simply say to do a self check; men need to know how to do them too. I told my neighbor the steps: Place your index and middle fingers under the testicle with your thumb on top. Firmly but gently, roll the testicle between your fingers. Repeat on the other one. After sharing this, he actually thanked me, even though it was a semi-awkward third conversation.

2. The Carpe Scrotiem

I’m not sure if it is because I have become more attuned to news media about testicular cancer due to my personal circumstances, but it seems that more celebrities are speaking out about their testicular cancer diagnoses. In the past few months, several baseball players have gone on the record about their battles, and HGTV’s Taurek El Moussa from Flip or Flop shared that he overcame testicular cancer in 2013.

Use these celebrities to get a conversation going. See them on the cover of People or on the scrolling banner thingie on the bottom of the screen on SportsCenter (I don’t watch ESPN much)? Point it out and say, “I had testicular cancer, too. Do you know how important it is to do regular self-checks?” Whoever you’re talking to will now have two connections to testicular cancer - the celebrity and you. If you follow it up with a how-to if necessary, it will make that person that much more likely to keep up with their self-check schedule.

3. The Question

Stay strong, brother.
While on our Hawaiian honeymoon, our tour bus driver, Hanalei (Henry in English), asked my wife Mallory and I what we were celebrating. We said that we were on our honeymoon and also celebrating my good health. With a quizzical look, he asked, “Have you had some medical problems lately?” This question gave me a perfect opportunity to bring up testicular cancer, educating not only him but others who were also on the tour.

It turns out, he is a ten year stage 4 lung cancer survivor. I would have never known that if he didn’t ask the question. You might not always have someone asking you a question that segues nicely into a discussion about testicular cancer, but you can ask them a question about their health, if you feel comfortable. Sometimes, it might be as simple as asking after their well-being. After truly listening, you can then share your own story, making sure to include the relevant self-check information so that your listener can take action.

4. The Misconception Redemption

The morning of my wedding, one of my groomsmen said, “Can’t you get testicular cancer from getting kicked hard in the balls?” After berating him for not reading my blog enough, I told him that that myth comes from people realizing something is wrong after getting kicked down there.

I used this as another opportunity to yet again rehash how to do a self-check. There are a ton of myths and misconceptions (I personally like the portmanteau ‘mythconception’), and dispelling these can be a way to get a conversation flowing.

After discussing this with him, I gave him a swift kick… obviously to help him remember to self-check.

5. The Pun Game Strong

I'll never get sick of it. 
It’s sometimes hard to have such a stiff conversation, and it’s certainly not a ball to do it, but you would be a nut to not sack it up and do it. Don’t get teste about it.

One of the only good things about testicular cancer is that it lends itself to many puns and jokes. How many did you catch in the opening sentence? Hint: there are at least 5! Words related to testicular cancer all form perfect jokes. Bonus points if you have a pair of sunglasses handy and live in Miami. When I write my book, I’m sure there will be a chapter dedicated solely to testicular cancer puns. Find an opportunity and work it in- the humor will lighten the conversation enough so that you can get serious without making things too awkward.

Case in point: as I wrote this post, I was sitting in an airport. Apparently my carry-on was too large for the overhead compartments. The counter agent said, “Sir, can you check your bag?”

“Once a month, my friend. Once a month.”

6. The Blunt Approach


Of all my recommendations, this is my personal favorite. Why? It helps destigmatize talking about testicles (or TesteTalk...hold that thought as I run to the US Trademark office). It’s straight-forward and to the point. It helps make it acceptable to talk about balls in public.

For this approach, lead right off with a direct approach. Around when I was diagnosed and received numerous texts asking if I was okay, I countered with, “Have you (or your husband/fiance/boyfriend/brother/dad/grandfather/male robot) done a self-check recently?”

While it may have initially caught the person off-guard (especially those who were merely being kind by checking in), I had their attention. From there, I explained how to check. Directly connecting to my (or your) own personal experiences with testicular cancer can be much more powerful than a more socially acceptable but less helpful reference. Yes, this approach is blunt (I don’t think anyone would ever accuse me of subtlety), but it helps get those conversations out there, which is what we really need.

If you’re still feeling unsure about gabbing about your gonads, I’ll just say this to you: you survived testicular cancer, so you can survive a semi-awkward conversation that may help prevent someone else from having to do the same. Once you get the ball rolling, I think you’ll find talking naturally about testicular health isn’t a hard nut to crack.

Saturday, August 5, 2017

PCL10: How to Talk to a Cancer Patient

Cancer is something that touches thousands of lives, yet most people are at a loss for what to say to a cancer patient. Those with cancer can sometimes feel uncomfortable because of others’ words, even when it’s unintentional. Chances are, those speaking the words are just as confused by what to say.

This was on my mind as I browsed Instagram one day. While scrolling through cancer awareness accounts, I happened upon a post from Lisa from Girls on Chemo. Her post is to the right, but the essence of it is that she had been dealing with what NOT to say to people who have cancer, but she wasn’t always giving people what they COULD say instead.

I asked her if she would like to collaborate on a piece that would be useful to those struggling to find the right words to say to someone with cancer, and this is what we came up with as a rudimentary guide. As I’ve said in multiple posts, everyone approaches cancer differently. This is just our take on what we would have liked to hear and things that didn’t sit well with us as we were undergoing treatment.


Instead of saying...

Nothing.
It’s ok if you don’t really know what to say, but not acknowledging someone’s diagnosis does not provide them with any comfort. It also makes you appear as though you either don’t care or don’t know about the diagnosis, which is definitely not the message you want to send

Say...

”I’m sorry.”
Even though it’s often overused (like when you bump into someone in the grocery store), it’s ok to say you are sorry to hear that someone has cancer. Even if you say nothing other than this, the patient knows that you are thinking of them. Cancer patients might not want to talk about their diagnosis, and that’s ok, but if you express your sympathy, at least they know you have their back and will be there if and when they’re ready to talk.

Instead of saying...

”What caused your cancer?”
Most people (including doctors) don’t know what causes cancer. Asking someone who has been diagnosed with cancer what caused it or why they got it might make them feel as though they did something wrong or something to deserve such an awful disease. Even if someone was a smoker for 40 years and then got lung cancer, you should never blame someone for their illness. The “why” should only be something discussed between the patient and their doctor.

Say…

“Are there any symptoms I should look out for in my own body?”
Justin is happy to share the symptoms of testicular cancer and will often go into an in-depth explanation if he sees an opportunity. We want to spread awareness. Many cancers cannot be prevented, as in our cases, but early detection can help get someone on the path to being cured. Phrasing your curiosity about their diagnosis as a way to be proactive about your own health can lighten the weight of asking someone to delve into their medical history.

Instead of saying...

“Someone I know passed away from cancer.”
We understand that you want to connect by sharing your personal story of how cancer has impacted you or someone you love at some point, but sharing a story where a cancer patient’s outcome was not a positive one is not helpful or uplifting and can be a very damaging reminder to a patient who is already constantly contemplating their own mortality. While this seems like an obvious thing to avoid saying, Justin actually had a timeshare agent use this as a "selling point" on his honeymoon!

Say…

“I know someone who had cancer. Would you like to hear about some things that they found helpful?”
Nearly everyone has a cancer story, whether it’s their own or a close loved one. There is power in sharing information, and cancer patients can sometimes benefit from another perspective. By phrasing it as a question instead of imposing unsolicited advice, you give the cancer patient an opportunity to say no. If they say no, it’s not because they don’t value your opinion - we cancer patients are inundated with advice from everyone, from medical professionals to random people. It’s sometimes overwhelming, and we need to focus on what is working best for us.

Instead of saying...

”Let me know if there’s anything you need.”
Phrasing your offer to help this way puts the pressure and responsibility on the patient to reach out to you. This is stressful, especially when patients have so many things to do already. Many people are not comfortable asking for help, so if you leave it up to them, you may never hear from them or have an opportunity to help them for that matter. Taking action means more.

Say…

“I am going to do XYZ for you.”
Instead of asking cancer patients to contact you if they need help, tell them what you are going to do for them. For example, you might say that you are cooking them a meal and ask which day this week would be best to bring it over or bring them a frozen meal that they can use at their discretion. Call them and ask if you can pick up their child to take them out to do something fun. Drop off a basket of snacks and magazines. Organize a meal train (on websites such as lotsahelpinghands.com or takethemameal.com) and get the community involved. Don’t just say you can help - actually help.

Instead of saying...

“You are brave.”
This seems like a kind thing to say, but many patients don’t know how to handle this compliment because they don’t feel brave. Lisa described this statement to her family and friends like this: If you were on a falling bridge and the only way to survive was to jump to the side, you would do it. Would you say that was a brave move? Or would you say that you did what you had to do to survive? Cancer patients have been forced into a situation that they don’t want to be in and must take immediate action. Anything that isn’t really an option doesn’t really seem brave.

Say…

“I can’t imagine how you feel.”
Simply put, until you have cancer, you do not know what it’s like to have cancer. Justin’s grandfather had cancer, but he didn’t know what it was like until he went through it myself. You can sympathize, but empathizing is difficult without going through the experience yourself. Recognize that, and cancer patients will respect that. Then, they may tell you how they feel. Listen when they do.

Instead of saying...

“Stay positive. I hear having a positive attitude helps.”
This can imply that the patient is not allowed to break down or have bad days. People need to work through a range of emotions when diagnosed with a major illness. It’s ok to be negative or to question. Furthermore, having a positive attitude will not cure cancer on its own. It certainly lightens the seriousness of the diagnosis, but it doesn’t actually help cure cancer. Also, it’s rare to find a cancer patient who doesn’t have a ‘positive attitude’ as best that they could. By insinuating otherwise, you’re being callous.

Say…

“I know always being positive can be hard. How are you really doing?”
As we said, cancer comes with some negative thoughts and bouts of sadness. These feelings are valid and should be valued. Recognizing this and being a source of comfort that patients can turn to if they choose to do so allows you to share in this range of emotions with the cancer patient. If you’re going to ask them how they’re doing, be ready to listen without offering your opinion. They may just need time to vent and share their feelings so they don’t have to keep it bottled up all alone.

Instead of saying...

“This is all part of God’s plan.”
This statement assumes that the patient is religious, which not everyone in the world is (about a quarter of Americans alone report that they do not affiliate themselves with any religion, and there are multiple other religions besides Christianity). Beyond that, cancer patients are experiencing rapid changes in their lives. Hearing someone talk about “God’s plan” has the potential to make cancer patients think that they were destined to get cancer, which is something no one should be made to feel, even if they don’t believe in a higher power. My best advice on bringing religion into a cancer patient’s life? Don’t do it unless you know for a fact that the person is religious and you know their specific faith. If you want to pray for them or think it is part of God’s plan, that is fine, but don’t assume the cancer patient feels the same.

Say…

“This is a tough time. I’m here for you.”
At the end of the day, this statement is an excellent one for almost any situation. It acknowledges that, yes, cancer is tough while also allowing the patient to know that you are there for them without pushing your feelings onto them. Using this phrase shows compassion, and this statement does it without bringing religion into it. Sometimes the best things you can say to a cancer patient are the simplest, and this is something we always appreciated hearing.