My mother (a.k.a. MamaJo) was diagnosed with Stage IV Triple Negative Breast Cancer in October of 2017. She was given less than a year to live but with the help of UW Carbone Cancer Center, she was with us for 18 months after diagnosis.
MamaJo spent the last 11 days of her life at Agrace in Fitchburg and my sister and I were lucky enough to spend those 11 days with her. During those 11 days at Agrace, we were treated like family from the moment MamaJo was admitted. We got to know a lot of the staff really well and have an incredible amount of gratitude and love for them. They made MamaJo's last 11 days as comfortable as they could have been and loving as they could have been. From the housekeepers, to the LPN's, to the volunteers, to the CNA's, to the nurses, to the groundskeepers, to the social workers, to the baristas in the Doc Rock Café to the grief counselers, never once were we treated without love, compassion, and respect. The way they cared for MamaJo was remarkable. Everything was done with love and respect for her. They made the process of losing her truly peaceful, beautiful and comforting. Words cannot describe the depths of gratitude, love, and respect my family and I have every single person at Agrace and their passion for what they do. We could not have asked for a more perfect place for MamaJo's final days. We are forever indebted to everyone at Agrace that cared for MamaJo as well as to Agrace's mission, professionalism, and compassion.
Please consider joining team #mamajostrong by either donating or participating in the Race for Agrace on September 15th.
Peace, love, and healing vibes to all!
To read more about her journey, see below.
My mother's cancer journey: My mother discovered a lump in her breast in August of 2017. She went in to Marshfield Clinic and was diagnosed with Breast Cancer. She was to have 8 rounds of chemo and then surgery.
The day before going in for her first round of chemo, they did a scan to measure the size of the breast tumor. During that scan, they noticed a spot on her liver so they cancelled chemo for the next day as they needed to come up with a new plan of treatment.
One week after learning of the spot on her liver, they tested it and confirmed it was cancerous. That same week, she had a complete body scan to make sure the cancer hadn’t spread anywhere else. The scan confirmed that it hadn’t and was just in her breast and liver.
Chemo was then scheduled to target both the breast and liver for the following week. That following week, they did another scan the day before she was to start her first round of chemo, to get the exact size of the tumor and spot so they could compare after the 8 rounds of chemo to make sure they had shrunk. That was a Thursday and she was to start chemo the next day, Friday.
Friday morning, she received a call, asking her to come up a few hours before her scheduled chemo, for another scan as they think she has spots on her lungs. Keep in mind, the week before, they did the body scan and said she was clear besides her liver and breast.
They did the scan around 11am on that Friday and she was to start chemo at 1. The Oncologist brought my mom and dad into his office around noon and said ‘Patti, everything has changed. You’re lungs are filled with cancer and you are now Stage 4. There’s nothing we can do for you and you have less than a year to live. We can try the chemo but it’s not going to do anything.” The Oncologist then got up, shook my dad’s hand, and said “I’m sorry, Rich.” and walked out of the room.
Within two minutes of receiving this death sentence, a clinical researcher came into the room and wanted her to sign off on them using her body/blood for research and whatnot. Literally, two minutes after receiving a death sentence, they wanted her to read these medical research papers and repeat them to the researchers, make multiple decisions, and sign off on them using her for research. She's all for research but I mean, come on!!!! Give the women a few days to process the news! My sister and I couldn't believe what we were hearing. It was like a bomb went off ! We knew we had to get a second opinion as we were not about accept this diagnosis so we called UW Carbone Cancer Center and got her scheduled for a second opinion.
My whole family went to her initial appointment for the second opinion and this was with Dr. Burkard. HE IS INCREDIBLE!!!! He sat down with us for an hour and half and went over everything about breast cancer from how it works, the different types of breast cancer, the different types of treatments, the new discoveries, the new medications, the side effects, the successes and fails of breast cancer, anything and everything one needs to know about breast cancer. He discussed her treatment for the breast and liver but never mentioned anything about the lungs, which we found odd. We asked about the plan for the lungs and how he was going to treat the lungs. What he said next, floored us!
Dr. Burkard pulled up her scans of the lungs from Marshfield Clinic and began to tell us that he had no idea how or why Marshfield Clinic could say her lungs were filled with cancer. He showed us two tiny spots on her lungs that he couldn’t confirm were cancerous. He said that humans are born with spots on their lungs so that’s what this could be or it could be scar tissue which humans tend to have. He was in disbelief of what Marshfield Clinic said to my mom and how they treated her. He said though, that since it spread to her liver, the two spots on her lungs were most likely cancerous but the absolute least of his concerns with her cancer.
My mother began chemo in November and after four rounds, the spots on her lungs, liver, and the breast tumor shrunk! Since she had such great results and since chemo is so hard on a body, she began on a clinical trial in January. The clinical trial was in Phase I and it was two medications, one to stop the cancer cells from duplicating and one that was a form of chemo in a pill. She was on the trial for one month then had a scan to see if the medications were working.
Unfortunately, the trial medications didn't work at all and the cancer had now grown and spread further throughout her lungs and liver. She went back on chemo and had about five or six rounds before the next scan. The scan had shown that the tumors and spots had not grown but they had not shrunk. The decision to try another clinical trial was made and this time it was immunotherapy. There was only a 14-17% chance this would work but we were still hopefully.
During this time, my father was diagnosed with ALS and my mother took on the role of his caregiver, even though she was battling this horrific disease. She was such an incredible warrior.
The immunotherapy trial didn’t work and the cancer had now grown so she went back on her third attempt with chemo. This time, the chemo was incredibly aggressive and was three weeks on, one week off. She continued this for a few months before having another scan.
That next scan showed that there was some growth in the lungs but overall stable. It also showed that it had spread to her pelvic bone. She had one round of radiation on that spot. During this time, ALS took my dad from us. They had just moved to Madison to be closer to my sister, her husband, their two children, and me. He spent just four days at their new condo here before he passed. MamaJo carried on like the warrior she was and never gave up.
The next months were filled with chemo, several trips to the ER for pain in her abdomen, scans that showed the chemo wasn’t working, and the decision to stop treatment. There was maybe a 3% chance that any chemo would do anything for her so she decided not to live her final time here like that. We set up a home visit for Agrace Hospice to asses her as we knew she’d need hospice in the next coming months.
Four days after that appointment where she decided to stop treatment, she was bedridden with pain in stomach. Luckily, Agrace was coming that day to do the assessment and decided that she needed to be admitted to hospice ASAP. She was admitted to Agrace on Sunday, April 7th and passed away Thursday, April 18th. During her time at Agrace, my sister and I were there every single day with her. We are lucky enough to have an employer that allowed us to work from Agrace during that time (as well as all of her chemo appointments and doctor appointments).
MamaJo didn’t talk at all or open her eyes much but she knew we were with her. My sister and I would sit and hold her hand and give her updates on our lives. We’d make sure to say our good-byes each evening when we left. My sister and I were lucky enough to have the chance to tell MamaJo that we were going to be ok and she was free to let go whenever she chose. We thanked her for everything and told her how much we loved her and how she will be with us always. During that talk, tears started flowing down her cheeks. She didn’t open her eyes or say anything but she knew we were there and felt our love.
The 'I love you' sign in sign language has been something my family has done since my sister's son was born in 2014. Anytime my mom, dad, sister, or myself would leave, we'd say bye and throw up the I love you sign. This became something Sarah's son started to do as well whenever any of us would leave. There were times when we'd get bad news from the oncologist and when no words could be said, we'd hold up the I love you sign. One day when my sister and I were leaving Agrace for the day, we both held up the I love you sign and out of nowhere, MamaJo held up the I love you sign and held it there for about a minute. That is a memory that I will hold in my heart for the rest of my life.
MamaJo’s sister, Becky, came from Virgina on the Sunday she was admitted. She spent most afternoons with us at Agrace as well as stayed overnight at Agrace every night with MamaJo so my sister and I could be home and get some sleep. When Becky had to go back to VA, MamaJo’s other sister, Jayne, flew in from CA. Jayne did the same things as Becky, spending most afternoons with us at Agrace and stayed over at Agrace every night with MamaJo. One of her brothers, Tim, was able to drive down two times to see MamaJo as well as Becky and Jayne. MamaJo’s best friend was able to spend an afternoon with her as well. She was never alone and was always surrounded by love.
One of the days at Agrace, we were asked what MamaJo’s favorite color was but didn’t know why. We told them that she always loved the color yellow. I figured it was for flowers or something for her room. I found out the night she passed away.
When someone passes at Agrace, one of the options they give you is to have all of the staff on duty at that time, line the hallways as they transfer the body to the hearse. We chose to do so and it was about 2am on Friday morning when the time came to transfer her. A nurse came into MamaJo’s room and covered her body with a beautiful yellow blanket. We held on to the bed as we wheeled MamaJo down the halls of Agrace to hearse while the staff lined the halls and said our final good-byes. The Agrace team was with us until the hearse drove away, holding our hands, and giving us countless hugs.
The next day, I found myself wanting to go to Agrace to just hangout as I missed the care team there. They all became family to us and will always remain family to us.
Peace, love, and healing vibes to all!