A conversation with the Angel Foundation and an adult who's been in my kids' shoes.People say thing like, ‘kids are resilient,’ ‘they’ll bounce back,’ and so many platitudes. The truth is, I’ve had a hard time getting over some of the stuff I’ve seen with my wife’s cancer, so how can I expect our kids to just take it and get up off the mat? I didn’t know, so decided to reach out. I turned to Emily Rezac, Program Manager of the ‘Facing Cancer Together’ program at the Angel Foundation, for answers. This program offers kid-friendly activities and Camp Angel, a summer camp, to help kids who are dealing with a parent with cancer. Events are designed to teach healthy communication and coping skills for kids. I contacted Emily to learn more about the program.  Emily Rezac working with children who's parents are facing cancer. Our programs get kids together to discuss cancer. We connect kids who are going through similar situations, in a place where kids can be kids and have fun at summer camp. Hmmm, I thought. Sounds like a Jack's event. Emily told me that she wished she would have had something like these programs when she was young. My mom was diagnosed with breast cancer when I was 7, and I was 14 when she was diagnosed with melanoma. I was anxious about her treatments. I knew something was going on, but I wasn't old enough to really understand it. I didn't have other people my age to relate to and connect with. She was amazed that her parents had raised her and her sisters through such adversity. I thought of my own experience parenting through caregiving and could only hope that when my kids are older they hold us in such esteem. But maybe her parents had the doubts I have now, I thought. I mentioned that and asked her how her parents had done it. My parents were great at communicating what was going on with my mom's treatments. They told us why she lost her hair. They talked to us about our feelings. It was just me and my 3 sisters. We didn't know any other kids who had gone through what we were going through. I wish we would have. That’s where our programs come in – they connect these kids with other kids who help them relate to cancer. She beamed through the phone. She had that connection to these kids that The Angel Foundation served, kids just like she and her sisters were so many years ago. Our programs help kids who feel alone, kids who feel isolated, kids who feel like they are the only ones going through what they’re going through. The programs are fun for kids and give them a social outlet, but they also have that twist - they educate about cancer and what they are going through. We bring these kids together and they can see that they are not alone. They connect.
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It was a normal, though slightly bleak, Sunday afternoon in April and caregivers came from across the metro area to leave our situations, challenges, and stresses behind us and focus on one thing: Who had the biggest WhirlyBalls of them all? The quick answer: Bob. But as with most things, it is the journey -- not the destination. So, join me in a little bit of stopping-to-smell-the-proverbial-flowers. (Which I might add, if it hadn’t been so cold all month there might have been a few more of in the ground.) With a rare exception, none of the gathered caregivers had heard of WhirlyBalls and frankly did not start in the mood of competitive spirit. After signing waivers which none of us could really have completely read, we were provided a quick overview of this sport which was described to us as the long-lost love-child of bumper cars, lacrosse, and basketball. Honestly, we knew that coming in; but it was something different to be next to the court and see the bumper cars, the two digital backboards with targets which would (presumably) light up when hit by a whiffle ball propelled by a plastic racket. Each time the backboard lit up like a hockey scoreboard a point was scored. One point: one whirlyball. So, the team that had the biggest score of whirlyballs would win. You can see how this got out of hand? I mean, seriously: Thirteen guys letting off stress and steam on a Sunday afternoon with no football on the TV or distracting honey-do lists; only a whiffle ball to hurl at digital backboards with targets while turning every which direction in a bumper car -- what did you expect? Remember bumper cars? My body had a vague memory of the last time my 48-year old self sat in one. It was with my daughter 6 years earlier. She was on my lap; it was the only way the height guard would let her on the kiddie bumper cars at the State Fair. Bless their hearts, my neck hurt for a week. Remember the super-logical steering? All the way to the right to go forward and then 360 around to go backward, and when you are going forward left is left, and right is right but when you are going backward right is left and left is right-oh-lord-how-does-this-work? For an hour we were all laughing and living just at that momentWell, that is how we “moved” around the court. Up and forward, down and back. Red cars shooting at the red digital backboard with a target. Yellow cars at the yellow. Scooping up the whiffle balls, trying to throw passes, dropping them, smashing the ball into a pancake and throwing it, hurling it, slamming it against the digital backboard. Blocking cars from turning, trapping them in corners, or just slamming into folks just for the heck of it. It was awesome. Seriously, this was fun. None of us knew what we were doing, except Todd and Chris for some unexplainable reason, but for an hour we were all laughing and living just at that moment. The only problem was that there didn’t seem to be a huge correlation between when you threw the ball against the backboard target and when the lights and buzzer went off and a Whirlyball was added to the scoreboard. Seriously, sometimes it went off and sometimes -- yeah, nothing. Andy gets the ball at the postLike a master Lucas set up the brackets and kept the competition honest. Team 1 blanked Team 2, and then Team 1 crushed Team 3. Then they went and drank some congratulatory beers as Team 2 and 3 played to determine who wasn’t the biggest loser. It was close, something which might have been called strategy started emerging. Players started playing positions. Attempts at fancy passes bouncing off the wall were made. Heck Team 2 even had a “play” -- it was simple: get the ball to Andy at the post -- and let him score. He seemed to throw the whiffle hard enough to make the thing light up. At the end that was enough, and Team 2 squeaked by Team 3 so that the final standings were 1-2-3 for teams 1-2-3. I am sure Kyle will post the members of each of the teams so you can cross-reference. It will prove that Alan is not the curse he thought he was. Even though I’m super competitive I will admit, I’m not sure anyone really cared -- it truly was the journey. A moment stolenOur journey ended sharing a family meal at Buca di’Beppo under the watchful eye of Sophia Loren -- and the Pope. A stolen moment for friends who share a unique bond, an implicit understanding and desire to support each other. And if you were wondering, the spaghetti and meatballs were really like Spaghetti and Meatball -- no “s”. And Bob got the biggest ball. The rest of us had to be happy with thoughtful certificates ranking our relative Whirlyball size. I have the second biggest WhirlyBalls. Darnit Bob. Rematch?
Author: Joseph Barisonzi
 I arrived early at the Common Roots Café for the March Jack’s event, Nintendo Switch Boot Camp. Kyle was setting up. Alan was there as well and remembered me from a previous Jack's event. Nice. I must really make an impression, I thought, not knowing if it was good or bad. Kyle started by introducing himself. He told us about Jack, a man who had ‘cut through it’ so many years earlier with his inspiring message of ‘Serving the Caregiver.' This was the mission of Jack’s Caregiver Coalition. This was why Kyle was here, and he served us well that afternoon. He then introduced Merrick, his son, and our instructor. He wore camo and shades. He had his work cut out for him today. His mission: to teach a bunch of old, video-game challenged guys how to play Switch MarioKart.  Six caregivers came to play, forming 3 teams: 'The Dominators', Peter and I; 'The Winners 2' (long story), Julian and Eric; and 'The Winners', Chris and Alan. Merrick let us know that mastering Switch MarioKart was serious business. Early in his teachings – say, 3 minutes in - somewhere around the discussion of the ‘A’ button being the ‘X’ button because the controllers were held sideways, I started to get foggy. I remember something about a trigger making your car 'drift' and speed up if held a certain amount of time. I stopped listening and decided to do what I do when driving in near white-out conditions - grip the wheel and focus 10 feet ahead. In this case, thumb tightly on tiny joystick, staring at curves and obstructions in the road. That was my strategy. I’m not speaking for the other 3 other guys who weren’t on the winning team, but that might have been theirs as well. In the end, Chris and Alan dominated on the road that day, but I didn’t leave empty handed. As Peter and I were discussing poor strategy choices, our conversation was interrupted when Merrick named me the 'Charlie Brown' award winner. Obviously, an ‘MVP’ type of award, I assumed. Jake, my 11-year-old Switch player, will be so proud. Then the champions challenged Merrick and he quickly reminded them of their rightful place in the video game pecking order. The dynamic of ‘getting it’ hung thick in the air.  The competition was fierce that day and training was top notch. We all learned a lot, and, in the end, really did want to win. But the best part of the event had nothing to do with MarioKart or winning or even the ‘Charlie Brown’ award. The best part was the unspoken/spoken stuff that went on between drifts, button pushing, trash talking, and feasting. It was the 'off the track' stuff that meant the most to me that day. This was a group of caregivers who simply ‘get it’ and were willing to share their struggles as cancer caregivers with others in that role. That’s a rare thing and well worth a trip across the river.  As I was leaving, I ran into one of the guys and flashed my Charlie Brown cup. ‘Look at that,’ I beamed. He smiled. ‘That just means you were the worst player.’ I knew that. Jake loved the cup, though. He didn’t need to know.
By the time Tracy was tested for multiple myeloma, we were months into utter panic. Her back pain was worsening and several weeks before she had cracked something in her back when standing up at our son’s baseball game. She drove herself to the ER and was given pain killers and told it was a muscle cramp. The next morning, she fell on the kitchen floor and I couldn’t pick her up. When the diagnosis finally came, I was in a fog of denial and panic. It can’t be real! How would I do it? There's no way I can care for Tracy. And what about the kids? And then I read about the high number of families that go into bankruptcy... There’s so much I need to do: kids sports, healthcare, financial assistance, cleaning, cooking, buying groceries, Tracy’s appointments, getting someone to watch the kids. I’m washing the dishes at 11 pm, worn out, and only remember that I got up at 6 am. Tracy says she needs help going to the bathroom. She can’t walk on her own. Five fractures in her back. It’s before we have a walker or cane. I bend over in front of her chair and she wraps her arms around my neck and I slowly stand, with the full weight of her body straining the middle and lower parts of my back. She screams as the freshest cracks in her back are stirred. She stands and I help her to the bathroom, knowing that if she falls or I drop her, her vertebrae could crumble. Any personal care in the bathroom is my job - she can’t turn her body at all. I’m a long way from calling my neighbor at 1 am asking her to come over to stay with the kids so I can take Tracy to the ER. I’m a long way from signing up for the Meal Train so we don’t have to eat McDonald's 3 times a day. I’m a long way from setting up a GoFundMe page. I’m a long way from jumping to the front of the line at the ER and saying, "My wife is on chemo and has a high fever!" People were asking to help and I was still telling them, "I got it - thanks anyway." I hadn't yet filled out those forms for financial assistance. I hadn’t scoured the internet for other means of assistance. I hadn’t yet explained the seriousness of Tracy’s condition to my boss. I was still ignoring the bills. I was a long way from Jack’s Caregiver Coalition. I hadn’t yet said "YES! I do need help!" I hadn't yet been bold. Damn, I wish I had been so much sooner.
By: Mike McGarryMike McGarry is a caregiver for his wife, Tracy, who has multiple myeloma. Mike and Tracy have 2 boys, Joseph, 13, and Jacob, 11. When friends and family hear the news - they will almost immediately want to help. This is great, of course, because we all need help. But it's often difficult to figure out what help we need - and for the helper, how best to help. Without any guidance though, your family and friends may choose something on their own and their version of 'help' might not be what you want or need. For example - many people send flowers or plants. This is lovely, but plants need to be planted, watered, trimmed and maintained - otherwise they turn into a vase of dried, decaying and smelly twigs. What most people don't realize is that, when you're busy caring for your loved one, you definitely don't want/need more things to do - and plant maintenance (for me) was one of those things I didn't want to do. Other friends might make and send food. This is GREAT if you're not handy in the kitchen or if you have other family members who require meal preparation. If so, add it to your request list. In our house, though, food is a tough thing to request because my wife is sensitive to gluten and I'm allergic to dairy. Any food items arriving at our house were quickly eliminated. Thankfully, there is a very easy/quick way to manage this and it comes down to communication. Here's what you do:
It starts with a Post-It. Everyone gets a 5x7” pad of Post-Its. We write down the things we want to talk about—one topic per Post-It. Then, all the topics go up on the wall. Everyone gets 15 seconds to “pitch” their topics to the group. If some are similar, they get combined. Some subjects we’ve covered are: worrying about our spouse dying, intimacy and cancer, feeling guilty as a caregiver, and how to help our kids adjust to their parent having cancer. The Klatch is democratic. We all get 3 votes to allocate however we want. Everyone marks their votes on the topics they would like to discuss. They can put all of the votes on one, or divide them up. Once the voting is done, we add up the tallies. The topic with the most gets discussed first. Once we are done with that topic, we move on to the next most tallied subject. It’s timed.We have a lot of ground to cover, so we stay on task by setting a timer. We begin by talking for 8 minutes. Then we vote again. Do we want to keep talking? Or, do we want to move onto the next subject? We take a quick thumbs up/thumbs down poll. Thumbs up means we keep talking for 4 more minutes before voting again. We know the conversation is over when the majority votes thumbs down. Key Takeaways.
After we’ve discussed each topic, we lock in the learning. What resonated with us? These are the key takeaways. Every participant is given a Jack’s Notebook in which to take notes (if they want). So they often add things they hadn’t thought of to their notes at this time. We move through as many topics as time allows. Although there have been times when one subject takes up most of the time because it is so important to us as caregivers. The conversation flows right where the participants want it to go. We often laugh together. We also can get very deep as we share with one another our experiences and what we’ve found works for us. Some of the participants have just found out their loved one has cancer. Others have been living with it for years. Each of us has something to offer. Each of us has something to learn. The Klatch is really a place of exchange. We come in with a burden, and leave having exchanged it for encouragement, resources, and new friends. The Challenge Tracker 2,000.Before everyone leaves, we challenge ourselves to do something. Anything. It might be taking our partner on a date, or paying for a maid once a month to make life easier. It might be returning to the bowling league you miss so much, or having a difficult conversation you’ve been avoiding. These challenges are easy to forget and push aside in the busyness of life as a caregiver. So we enter them into an online form that helps us hold each other accountable to do what we said we were gonna do. We call it the "Challenge Tracker 2,000"! I challenge you to check out the Klatch, are you up to the challenge?
 A message from Kyle Woody, a Jack's Founder & Executive DirectorDear friends, I'm excited to announce that I've gone to work for Jack's full time, continuing to lead the organization as I have since 2014 when we were founded. It's my hope this news will further inspire all of you that have joined us in our mission, we want you all to know how serious Jack's is. Our mission is no longer just something we work on during nights and weekends or when it's "convenient." It's something we're always working on. Our recent "Extreme Sandbox" program in October is a perfect reminder of why we exist. We had the privilege of bringing a group of men together who've collectively had decades of experience caring for their loved ones with cancer. A group of men who haven't, until Jack's came along, had a community for them. Jack's understands what the powerless frustration caused by losing control to cancer does to a man. So we gave these men the controls of powerful machines and challenged them to annihilate the "Cancer Car". They didn't disappoint! What we do is simple really - our hospitality brings these men together, and together they improve. And as we prepare for November, National Family Caregivers Awareness Month, we have more exciting news to share. Our board is growing. We're launching a series of Twitter Chats titled #Menwhocare during which we'll moderate a national conversation on the subject of men who are caregivers. And we're launching a Podcast that's on a mission to inspire the world to reconsider what men are capable of. Plus we'll have our first ever program at Prince's place! I'm inspired by Prince and the story of his performance at the 2007 Super Bowl. Largely recognized as the best Super Bowl halftime performance in history. Who could forget Purple Rain in that huge Miami rain storm? But did you know that before the show Prince was warned about the numerous risks of performing in that storm. When asked about whether or not to proceed, Prince responded,  Can you make it rain harder? - Prince How bold and confident the guy was to rise up and just get stormed upon, to bring what he brought to that challenge.
At Jack's we believe every man has the potential to face the challenge of cancer caregiving as boldly and confidently as Prince faced that Miami rain storm. And while we're inspired by Prince our story isn't about people like him. It's about the lives of everyday people like you that live in your community. Everyday people that wake up every day and face something much more sinister than a storm. All our best, KW  “One is the loneliest number . . .” begins a popular 1960’s song by Three Dog Night. But 2 can be the loneliest number when your partner has cancer. Treatments left Cindy* and her husband stranded at home and away from family and friends in order to keep germs and illness at bay. We were such social people, and suddenly we didn’t have the same lifestyle anymore. It was incredibly isolating and I was constantly conflicted and guilty when I would get together with friends. Cancer Changes a Partnership |
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Everyday life does not prepare anyone for a cancer diagnosis.
Where would you learn this?
In this 2 part blog series, we hope you’ll find comfort in reading the words of real caregivers sharing their very real experiences while caring for their partner. We’ll share their encouragement and local and national resources if you or someone you love is a caregiver.
Where would you learn this?
- Health class in high school? Yeah right: you felt too invincible to listen, anyway.
- Your doctor’s office during a routine physical? Not likely: doctors are too overworked these days.
- Over dinner with your friends or family? As if: try recovering from that conversation killer, “Um, can you believe what our president tweeted today?”
In this 2 part blog series, we hope you’ll find comfort in reading the words of real caregivers sharing their very real experiences while caring for their partner. We’ll share their encouragement and local and national resources if you or someone you love is a caregiver.
The Cancer Diagnosis
My first reaction was shock and surprise—my wife had no family history of breast cancer and she had just finished breastfeeding our (child)!
-Henry*
My wife and I have 2 kids. Cancer became like the third child in our marriage, It was super needy, very unpredictable and could be the biggest pain in the ass.
-Chris’s* wife was diagnosed with Stage IV colon cancer.
Cancer is a perpetual cloud hanging over our heads. I wish I could take away all of her pain. I want to be in her shoes. I want to be the one with the cancer instead of her.
-Tayvon's* wife was recently diagnosed with a recurrence of breast cancer.
It was so hard watching him not feel well and not be able to help him. I felt like I had to be optimistic all the time, and it was hard to balance this and talking about the bad stuff and the what-ifs. I regret not having the end-of-life conversations with him.”
-Cindy's* husband was diagnosed with lymphoma.
Day-to-Day Life
Part of being a cancer caregiver also means taking on additional responsibilities—tasks that do not come naturally and/or duties never completed before: cooking, cleaning, yard maintenance, finances, etc.
We had a meal delivery service bring food to our house and I had to learn how to cook while my wife took care of herself, I’ve had to learn how to get professional help with things like cleaning. But there is only 24 hours each day to get everything done. I don’t spend as much time exercising or working out because I feel like I need to be home helping my family.
Tayvon*
Children of caregivers are affected, too.
My son was in college when my husband was diagnosed with cancer. He would drive back home often—getting lots of speeding tickets—to see his dad, until he finally had to pull out of college for that semester.
Asari*
Caregiving is a team sport.
In hindsight or having done so themselves, each caregiver encourages others caring for someone with cancer to ask for help. Chris remembers friends, family, and even acquaintances offering to help, but not wanting to admit his vulnerability by accepting. He strongly suggests “coordinating and reaching out to the right people at the right time for the right things: empowering family and friends to be involved.”
His football metaphor: “Caregiving is a team sport which you need to learn to play. You should think of yourself as the quarterback throwing passes and engaging the team (your friends or family) instead of running the ball yourself on every play.”
Case Keenum showing caregivers how it's done with the Minneapolis Miracle!
Chris continues, “I had this friend who brought his family over to help out. He looked past my wife, who had cancer, and said, directly to me, ‘I am here to serve you.’.” Chris was amazed.
Are you a caregiver? Do you know someone who is currently a caregiver?
Reach out for help or help someone today. We’ll continue the conversation in part 2 as we explore personal and relationship changes as well as local and national resources for caregivers.
*Names have been changed to protect confidentiality.
Are you new to cancer caregiving? Do you know someone who is? When cancer strikes our loved one, we caregivers instantly begin playing a role we've never played before. Cancer impacts every aspect of our life. We get no training, no chance to get good at it first. We just start playing the game!
The Beginner's Creed
By Peter J. Denning (Adapted to caregiving by Jack's)
I am a beginner.
I am entering a new game about which I know nothing. I do not yet know how to move in this game. I see many other people playing in this game now. This game has gone on for many years prior to my arrival. I am a new recruit arriving here for the first time. I see value to me in learning to navigate in this domain.
There is much for me to learn: The basic terminology. The basic rules. The basic moves of action. The basic strategies.
While I am learning these things I may feel various negative reactions: Overwhelmed at how much there is to learn. Insecure that I do not know what to do. Inadequate that I lack the capacity to do this. Frustrated and discouraged that my progress is so slow. Angry that I have been given insufficient guidance. Anxious that I may never satisfy all the expectations of my loved-ones. Embarrassed that everyone can see my mistakes.
But these moods are part of being a beginner. It does not serve my goal and ambition to dwell in them.
Instead, if I make a mistake, I will ask, "What lesson does this teach?". If I make a discovery, I will celebrate my aha moment! If I feel alone, I will remember that I have many friends ready to help. If I am stuck, I will ask for help from my teachers.
Over time, I will make fewer mistakes. I will gain confidence in my abilities. I will need less guidance from my teachers and friends. I will gain familiarity with the game. I will not cause breakdowns for promises I lack the competence to keep. I have an ambition to become competent, perhaps even proficient or expert in this game.
But for now, I am a beginner.
I am entering a new game about which I know nothing. I do not yet know how to move in this game. I see many other people playing in this game now. This game has gone on for many years prior to my arrival. I am a new recruit arriving here for the first time. I see value to me in learning to navigate in this domain.
There is much for me to learn: The basic terminology. The basic rules. The basic moves of action. The basic strategies.
While I am learning these things I may feel various negative reactions: Overwhelmed at how much there is to learn. Insecure that I do not know what to do. Inadequate that I lack the capacity to do this. Frustrated and discouraged that my progress is so slow. Angry that I have been given insufficient guidance. Anxious that I may never satisfy all the expectations of my loved-ones. Embarrassed that everyone can see my mistakes.
But these moods are part of being a beginner. It does not serve my goal and ambition to dwell in them.
Instead, if I make a mistake, I will ask, "What lesson does this teach?". If I make a discovery, I will celebrate my aha moment! If I feel alone, I will remember that I have many friends ready to help. If I am stuck, I will ask for help from my teachers.
Over time, I will make fewer mistakes. I will gain confidence in my abilities. I will need less guidance from my teachers and friends. I will gain familiarity with the game. I will not cause breakdowns for promises I lack the competence to keep. I have an ambition to become competent, perhaps even proficient or expert in this game.
But for now, I am a beginner.