Michael Greene: Cancer caregiving, but then dealing with life, too. And then finding himself.
I said to him:
‘Cancer is a tornado It's massive and changes everything around it.' I saw the devastation I saw the horror I saw the gritty, emotionless days of driving through Carrying it all on my back And I saw the blackness And I heard the trains And I felt the winds of change Tearing into everything And into me And I stood alone Then he said: ‘Think of it as a river - You can swim against the current for a while But not for long. It’s bigger than you - than all of us You can navigate it Slight adjustments here and there Can get you to one side or the other To a place where you’re safe. Reach out If it’s pulling you down. There’s help all around you. You need to accept it And go with its flow. It’s the nature of life.' It is life - cancer is just part of it.
I feel like I’ve known Michael Greene forever; like I can tell him anything; trust him with my most sacred secrets; talk to him about my troubles and he will always understand.
In truth, I’d only met Michael in person a few times. We’d exchanged emails and phone calls about a Jack's blog last summer and other Jack’s-related things, and I ran into him at a friend’s wake last summer. He’s a sympathetic person, who always seems to have an ear to lend. He’s always been willing to help other Jacks out. That’s why, I suppose, he helped pioneer the Jack-to-Jack Program and served as a mentor to so many Jacks. And that’s why, I suppose, that my own troubles never seem to surprise him, and he always listens, even when I think they’d overwhelm him. He’s been a caregiver for years, but, as with all things in life, the winds of change recently threw him off the course he’d been on for so long. He may have felt adrift for a while, I don’t know. He may have felt like he needed to adjust his course to get back into a healthy current that would bring him home, where he’s at his best. When I met with him recently at the new Caribou in Woodbury, in the huge new development in what used to be the State Farm campus, he seemed steady. He was sure of himself. He was determined to live life the best way he knew how. And he was still the guy I’d come to respect and who so many Jack’s members know so well - the guy who's helped them just get through it. He’s Michael Greene. Yea, Michael Greene!
Michael Greene has always been a caregiver.
“My mom had Chron’s disease and I cared for her during most of my childhood,” he says. “Then my grandma was ill during the end of her life and I cared for her. So, when Sarah was diagnosed with stage 4 breast cancer, I was kind of used to caring for someone who was ill and needed help." It was 2010 when Sarah found a lump in her breast when she was in the shower. It was a Friday and she was alone. “When she called the doctor, he said she was probably just on her cycle,” Michael says. “We went in on Monday, and they told her right away what it was. They did a mammogram and biopsied the lump. I didn’t really think anything of it at the time and then the doctor brought the sample out to show us – the biopsy was super white. I knew right away that it was cancer, because I’ve always heard that cancer is white. “Sarah had a family history of breast cancer, but we didn’t expect it to affect her,” he continues. “Once we found out the news, we took it pretty hard. I remember trying to drive home from the doctor’s office and Sarah trying to call everybody she knew. “Right away, we get home and her parents were there and we told the kids. We never hid anything from them as far as doctor’s appointments or what treatments were next. We wanted to be forthcoming with our kids about it as much as we could. We didn’t mask anything. We didn’t want to be ‘those parents.’
Sarah had a family history of breast cancer and tested positive for a mutation in the BRCA gene. Most inherited cases of breast cancer are associated with the mutations of two genes: BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two). Everyone has BRCA1 and BRCA2 genes. The function of the BRCA genes is to repair cell damage and keep breast, ovarian, and other cells growing normally.
Sarah’s immediate treatment was surgery. She had a double mastectomy and breast reconstruction twice, when her implants became infected. “The surgery was horrible. There was a long recovery, 24-hour care while she was recovering. She needed help with everything – eating, bathing, taking care of the drains, which I had to take out, and taking her to frequent doctor appointments. “She got an infection in the middle of the whole thing and was then given something in the ER and she almost died. She was then put on dialysis twice.”
“When she was in recovery, she wasn’t really able to move. After the surgery, they literally had drain tubes that came out of her body and fluids would drain from her body and we would have to dump out the fluids and measure how much is coming out of her so we could let the doctors know. It was at least a week of doing that after her surgery.”
Patients that have a mastectomy for breast cancer often have surgical drains placed in the their body to allow for drainage of fluids that build up in the areas where the breast was removed. Without having drains in place, the fluids would build up and cause discomfort and delay healing. The downside of drains is that they offer bacteria a way to enter the body, so it is important that the areas around the drains are kept clean and dry so they don't get infected. It took Sarah 4 weeks to recover from the mastectomy surgery. After Sarah recovered from the surgery, she began chemotherapy and radiation to ward off any cancer that remained in her body and to prevent cancer from spreading to other areas in her body. “When she was on chemo and radiation, Sarah’s mom helped us out quite a bit, taking her into the oncologist almost every day so I could work and take the kids to school, who were 9 and 10 when she was diagnosed. “Going from school to work to school to get the kids… you’re juggling,” Michael continues. "Juggling to do so many things: work, cleaning, caregiving for Sarah, taking care of the kids, and making dinner and meals. It was so stressful. It was always something. “Sarah was in the hospital for 2 weeks at one point. It was around Halloween, because I remember trying to work, rushing home, carving pumpkins with the girls, taking them out for Trick or Treating. It was a long day. They all were.”
The chemotherapy regimen gave her little time to recover.
“The chemo would knock her down for 3 days and then by the time she was starting to feel better, she’d have to do it again. So, you have about 2 days where she’s really feeling good and then the chemo takes her back down.” She continued chemotherapy from 2010 through the end of 2013. Her cancer went into remission by the end of 2013, but in early 2015, it came out of remission and became metastatic. By then, it had spread to her lungs and her vertebrae. “They had to treat it with chemo and radiation," Michael says. "The chemo and radiation ended up tearing up her L4 and L5 vertebrae, and she had to have additional surgeries to fix those – she still has trouble walking because of that." With the return of cancer, she started taking the chemo in pill form and continued taking it until early 2019, when doctors told her that she was clear of her cancer and was in remission."
I hated to ask for help! But we had to reach out to everyone just to get by.
“It was tough having 2 small kids and caring for my wife who has cancer and basically needed full-time care at home,” says Michael. “We reached out as much as we could, because we needed a lot of help. Medical bills were really bad for us. Someone did a fundraiser for us one time – I think it was at Applebee’s, so that paid a couple bills. “We also signed up for the Meal Train online and people would bring us dinners and gift certificates for meals. That was great – it made my job as caregiver and dad a little easier. “Someone did a GoFundMe campaign for us. We also applied for several breast cancer grants and got a couple rent payments paid and a few $500 grants. It was something, but it wasn’t near what we really needed."
But it was more than the money and meals they needed…
“My kids were 8 and 10 when their mom was diagnosed with cancer," Michael continues. "They seem OK now, but my youngest had a lot of issues with Sarah’s cancer when she was little. Both kids went to therapy so they could work through their issues. They also went to counseling at school and we sent our entire family to support groups for Sarah’s cancer. "They were trying to understand what was going on with their mom and her health and all the chaos that was going on. “At the same time, we got them involved in programs at the Angel Foundation." The Angel Foundation provides emergency financial assistance, education and support for local adults with cancer and their families. Since 2001, the organization has given more than $5.5 million in emergency financial assistance for adults in active treatment for cancer in the Twin Cities for their non-medical necessities and has served more than 25,000 people in Minnesota through its programs. Their 'Facing Cancer Together' program provides a variety of free kid-friendly activities and resources that teach healthy communication and coping skills in a fun, age-appropriate and hands-on way. “The Angel Foundation was wonderful for us when the kids were younger - when they were going through all this. It was always so exciting for us and we looked forward to all the events and programs they had for the kids. The kids loved it and it really helped them understand what was going on with their mom's cancer! “We have so much respect and appreciation for what Angel does to help kids and families who are going through cancer,” says Michael.
Change got into everything, like sand from a beach.
“As far as Sarah and I and our relationship, we’ve been going to counseling for about a year and half now. Some of it worked and some of it didn’t. “Cancer certainly didn’t improve our relationship. It brought in a lot of stress, sure, but things weren’t working out between us, even with the counseling, and we had trouble before 2010, when she was diagnosed,” Michael continues. “Our problems had nothing to do with her cancer, either. So, in August, last summer, we got a divorce. “She’d been clear of her cancer for over a year - I wouldn’t have left if she had cancer and needed help." The following month, in September, Michael ‘came out’ as a gay man and met his current partner, Anthony.
“With the divorce, my kids weren’t happy,” Michael continues. “My older daughter is still processing this, I guess. My younger daughter is taking it a little better. They were both pretty pissed off about the divorce and were still trying to process it, so I held off on announcing that I was ‘out’ until November.
“It’s only been a few months with this latest change. I guess with everything else, I don’t know how to process it, either. I’m still dealing with it. I’m extremely happy that I’m finally admitting some things, but I wonder why I didn’t do it earlier. “The amount of change since the divorce that I’ve had to deal with … it’s been super stressful! I’m anxious and kind of depressed and, because of it, I’m on leave from work. I thought I was OK with all these changes and then ‘boom,’ oh wow!... then everything just hit me and I’m still trying to catch up with everything. “It’s weird – all these emotions. I’ve never been in a situation like this before,” he continues. “Today, I couldn’t even get out of bed. Sometimes I cry just like that or think of something and start crying. It has to do with everything."
Getting back into it!
"I feel like I should be helping others who are going through cancer, like I was," Michael continues. "Before all these changes, I was helping mentor new caregivers with Jack's, just like someone helped me when I needed help. “There’s so much to tell these guys – these new caregivers – things I learned because I lived it - so they won’t be completely shocked with what comes next. So they have someone to talk to, like I did." It's important to have someone to talk to when you're dealing with so much change! “I tell these guys to ask for help. Don’t try to be the hero and do it all – that’s what I tried to do. I figured I could do it all and didn’t need anyone else’s help. I’d encourage them to get help right away. “You can’t do it all by yourself! Reach out!”
“I still worry about Sarah and her scans. She’s metastatic, so we always have to worry about something coming back. I’m in touch with her 3-4 times a day. I help her with anything she has to do at the house. She’s calling me to help her with something in the garage or to change the lightbulbs or whatever and I’m over there.
“We still have to figure out how to get along. Things have changed, sure. But with Sarah’s cancer in remission, I really hadn’t been a caregiver for a while,” he continues. “I’m not used to not being a caregiver. I’ve been one for so long. “As a caregiver, it’s never about you. It’s always about the person you’re caring for. It’s about taking care of your kids and your family. You put yourself in the back seat all the time. “Sometimes, you’re so worried about everyone else – the kids, your wife – that you find yourself in your car driving and you forget where you’re going. “I’ll always consider myself a caregiver, but I need to take care of myself, too.”
Michael & Anthony
This Jack Story was brought to you by:
Visit AARP.org/caregiving for family caregiver information and resources.
Most people think of family caregivers as women taking care of their aging parents or children. What many don’t know is that 16 million family caregivers in this country are men. AARP is on a mission to break the stereotypes and ensure that all family caregivers, including men, get meaningful support. Men, often due to societal perceptions, avoid talking about their caregiving situation and don’t feel comfortable talking about the emotional and economic challenges of caregiving. However, caregiving is tougher than tough and seeking help is not a sign of weakness but a sign of strength.
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