Joy

Q: Approximately how old were you (or your loved one) when you were diagnosed with kidney cancer?

Joy: 46 years old

Q: Approximately how many years have passed since being diagnosed with kidney cancer?

Joy: a couple of months

Q: How did you find out you had kidney cancer?

Joy: It was an accident, I had some vague symptoms like fullness, shortness of breath, some tingling in my arms.  My doctor had me test my heart and that was fine, but then a scan was ordered and they found the cancer

Q: What treatments did you get for your kidney cancer?

Joy: Nephrectomy and Open Heart Surgery and clot removal.  I had an extension of the cancer that went to my heart and a blood clot behind that that went to my legs.

Q: What is the current status of your kidney cancer?

Joy: Some spots are in my lungs.

Q: What were your first thoughts, or the first emotions you felt when you found out you had kidney cancer?

Joy: I was shocked, scared and could not believe it was happening.

Q: Please tell us about what you do for work

Joy: I’m the Juvenile Court Intake Lead Worker for a County Government Agency. I receive juvenile delinquency referrals from law enforcement and truancy referrals from the schools. I meet with juveniles and their parents and then make a recommendation as to how it should be handled. I work closely with families, District Attorney’s Office, law enforcement, Court System, schools, drug & alcohol programs, foster care, group homes, corrections, and community resources. I love my job!

Q: Please tell us about what you like to do in your free time. Enter as many or as few things as you like, i.e. hobbies, past times etc, things you’d rather do instead of thinking of kidney cancer.

Joy: In my free time I love spending time with my kids and watching them play sports and doing things they love. I enjoy camping with my family as well as fishing and turkey hunting. I also enjoy going to movies with friends.

Q: Please tell us about 1-2 people who helped you with your journey with kidney cancer.

Joy: My lifelines helping me to deal with this has been my husband – Shayne George, my daughter – Jenna and my son – Dalton. They have been my rocks, my support, my motivation to get better, and they’ve been a shoulder for me to lean on when I’ve gotten discouraged.

Q: Please share the most vivid details of your kidney cancer story. Feel free to write your whole story as you remember it.

Joy:  The middle of March 2018, I started having symptoms of just feeling full in my upper stomach area. I didn’t feel hungry, I was only eating yogurt and graham crackers and drinking water. When I would do even the slightest of physical activity like getting ready for work in the morning or walking up 8 steps to my bedroom – I would feel nauseous, loss of breath, and I had a tingling feeling going down my arms and legs. I was concerned it was my heart and having symptoms of a heart attack.

I went to my primary doctor on March 13th and he treated me for a stomach ulcer and referred me for an extensive heart stress test. I could not get that stress test scheduled earlier than the very end of March. (I thank God that I was never able to do that stress test or it likely could have killed me). On March 19th I went in to the local doctor to state nothing has changed and requested some medication to help with being nauseous. She at least did an EKG and found that my heart was good and no concerns. Blood work showed the same numbers as my appointment the week before. She was the doctor that recommended that I do an ultrasound to see if there was something going on with my liver or pancreas, etc.

My husband I were planning on flying to Texas that Saturday to watch our daughter play college softball. Given that I was feeling so ill, we had to unfortunately cancel our trip. (I thank God that I did not get on the plane or it could have also been deadly). The first available ultrasound appointment was Thursday, March 22nd at 8:00 a.m. and I had to go to a different city to do that. I was planning on going to work right after this appointment. The ultrasound showed some images so they wanted me to do a CT Scan immediately, so I did that. A short time later the doctor that referred me for the ultrasound called me while I’m sitting in the hallway of radiology by myself and told me that I had a tumor on my kidney and they believe it to be cancer. She also stated that they also found a blood clot.

The doctor said that I would need to go to United Hospital in the Twin Cities today but she needed to see when they would have a bed available. A short time later she called again telling me that a bed at United would not be available until sometime this afternoon (it was currently about 9:30 a.m.). The doctor told me I needed to go to the emergency room of the hospital I was at as she already talked to the emergency room doctor and nurse and informed them of my situation. They needed to get me started on blood thinners as soon as possible to attempt to maintain the blood clot.

So I called my husband and informed him. I was in the emergency room hooked up to the IV of Heparin for about 6 hours before they transported me by ambulance to United Hospital. I spent the night there and the next day they informed me that the surgeon that would be doing the procedure was going to be gone for a week. They did not want me waiting that long and transferred me to the University of Minnesota Hospital that evening, Friday, March 23rd.

I should also note that every nurse and doctor from the first emergency room to United Hospital to the U of M Hospital continuously asked me for my pain level. I was pleased to share that I never had any pain in the symptoms that I had.They seemed surprised by that. I shared that I had more of a fullness and discomfort in my upper stomach area. My husband & I decided that we were only telling people about the blood clot and not sharing that I had cancer at this point.

Our daughter plays softball for St. Catherine University. They headed to Texas to play the game she loves and is great at on Saturday, March 24th and she was not going to be back until the early morning hours on Thursday, March 29th. I didn’t want her just staying here and waiting days before the surgery was even going to happen. that served no purpose. I wanted her to go, do what she loves and enjoy the experience of playing ball in Texas. I also kept it quiet as I did not want family or friends posting anything on social media that she might see. I wanted to be the one to tell her the unfortunate news face to face.

Our son is 18 and a Senior in high school and getting close to graduation. So he also had plenty on his mind. The doctors and nurses were very considerate and respectful about not sharing information until our son left the room. It was hard seeing him every day and keeping it from him. I just prayed and knew both my kids would forgive me afterward.

It was at the U of M Hospital that I learned that the tumor was covering 85% of my right kidney and my kidney was enlarged to twice the size it should be. The tumor was also growing from my right kidney up the main vein to my heart. The doctors stated it was like a branch or a sausage consuming the vein. They also said that there was a blood clot below the tumor that was on my kidney. The doctors also said there were a couple small spots on my lungs that they were not yet concerned about at this point. Those were not urgent. They stated that it was possible that those were not cancer and could just be scar tissue. After about 4 days of being on the Heparin IV, they discovered I was allergic to Heparin by monitoring my blood work. They had to switch me to a different blood thinner. That weekend I met so many doctors and surgeons.

I kept hearing that Dr. Weight was the lead surgeon facilitating the “teams” that would be involved and doing my surgery. Some of those teams consisted of the cardio thoracic surgeons, urology surgeons and the transplant surgical team. I wondered the reason for the transplant surgical team and it was shared that they would be the team to mobilize my liver so they could get to my kidney.

They scheduled my surgery for Tuesday, March 27th. I had to tell my son the unfortunate news the day before the surgery so he was aware of everything. I had to tell my baby boy I had kidney cancer. That moment was one of the most difficult things I ever had to do. I caused him pain, I caused him heartache, I caused him sorrow, I caused him being scared. Cancer caused this! Dalton said he had a feeling that there was something more going on than just the blood clot. He knew we weren’t telling him everything. It was difficult to ask him to not share this news with his older sister as they are very close, but he understood the reasoning behind it. I told my two brothers and my sister-in-law so some of my family was aware of the situation. I was relieved that I told them as my two brothers came from 3.5 hours away the day of my surgery. They kept my son and husband company and distracted that long day. We were told that the surgery would take 6-7 hours. The surgery ended up taking 13 hours. I was told that the surgery would start about 10:30 or 11:00 so they would get me from my room at about 8:30 to take me down to start the prep for surgery. I was surprised when they woke my at about 6:10 a.m. stating that plans changed, they were coming up for me at 6:30. I was thankful my husband and son were there early so they were with me by 6:30. They were able to be with me for a bit during the surgery prep. I got to see my son and my husband prior to going in for surgery

I recall sending a text message to Shayne, Jenna, and Dalton before I left my hospital room. I wanted each of them to know I love them, I’m proud of them, and to take care of themselves and each other. The nurse called Shayne every couple hours to give him updates throughout the surgery. They started the surgery by about 9:30 a.m. The surgeons came out at about 4:30 p.m. and told Shayne that they were done and that the surgery went good. Dr. Weight and Dr. Shumway were instrumental in my surgery. I cannot thank them and their teams enough. They told my family they were closing me up and I should be out in about 2 hours and then I would go to ICU. It actually took about 5 hours before I was to ICU.

Shayne and Dalton got to see me at about 9:30 p.m. My brothers were able to see me before they left to travel home. I was in ICU for 2 days before coming out of it and really waking up. I recall not being able to talk because of the tubes down my throat so I wrote words in the air for my family and nurses.

Jenna came home that Thursday morning and I finally got to see her. Shayne told Jenna about me having cancer and all the information we kept from her initially. I was relieved she was home and knew about everything. Shayne then started telling our family and friends the whole story. They understood and respected the reasons we kept it quiet. My kids come first!! It was Friday or Saturday I believe that I got moved out of ICU and up to 6th floor. Easter was that Sunday.

My recovery seemed to be going well. The surgeons were pleased with the surgery and how I was healing. The incision starts up at the center of my collar bones and goes down almost to my pelvic bone. There were other incisions for the tubes needed for surgery and recovery. They shared that they needed to mobilize my liver to get to my kidney. While being on heart bypass they mobilized my liver by shutting off the blood supply. They could only do that for 25 minutes at a time and it could only be done twice. During my surgery, they had to do it twice. The first time was for 22 minutes and the other was 6 minutes. (I would not want to be the one watching that stopwatch). They removed my right kidney, my adrenal gland, and seven lymph nodes in that area. They also removed the tumor growing from my kidney up the vein to my heart. Dr. Shumway told my husband that during the surgery, she put her finger in my heart, she pushed the tumor down the vein and then they tied off her finger in that vein, and they removed the tumor out of my heart.

The teams were so gracious and wonderful before, during, and after my surgery. Dr. Weight continuously checked on me throughout my stay and kept me informed prior to the surgery. He was personable with me and my family. He understood my want for getting through this successfully, especially as I had a high school graduation party to plan. He helped my inspiration to get better. Three days after surgery my heart went into A-Fib. The first two nights happened in the middle of the night when they nurses rushed in and woke me up. Those only lasted a few minutes. My heart rate went up to 185-205 but returned to normal after a few minutes. The third night it happened it was there for about 24 hours. I recall hearing them calling ‘Code Blue’ and ‘Stat’ to my room number. That night I could actually feel it being in A-Fib. I remember them giving me medications, injections, etc. to get it under control. After a few hours it dropped down to about 150 and they continued to monitor it closely.

The next day the doctors told me that it if my heart rate did not come down, that they would need to put a camera down into my heart to see what they could see. They would also likely need to shock my heart with the paddles to get it back into rhythm. They would possibly have to do that twice. That scared me a bit. Fortunately, that same evening, about 8:30 p.m., while visiting with my daughter Jenna, my heart rate dropped from 150 to 100. Due to this, the doctors did not think it was necessary to perform that procedure on my heart.

They put me on heart medication to attempt to try to lower it even more. I was discharged from the hospital to home on Friday, April 6th. I was home for 4 days before I started feeling sick to my stomach, I was nauseous, vomiting, and very weak when I walked. In the early morning hours of Wednesday, April 11th, Shayne called the U of M Hospital and they told him to bring me to their hospital emergency room. They did not recommend me going to the local hospital as my situation was too complex. Once there, they realized there was a large amount of fluid around my heart.

They did a procedure of putting a pigtail catheter in my heart. They injected Lidocaine around my chest area. I could feel the tube going into my chest. They informed me they drained at least 650 mL of fluid from around my heart. There is only supposed to be 10 mL. There was another 250 mL that drained over the next day or so. That tube was excruciatingly painful in my chest as it seemed to adjust when I moved. The cardiologist was recommending that they would likely have to put a pericardium window in my heart sac to help it drain. The doctors seemed surprised, especially the cardiologist, that I was doing so well. I was told that I would be there through the weekend and maybe discharged the next Monday or Tuesday.

Although I was not in the hospital in regards to my kidney, Dr. Weight still checked in on me. He also kept in close contact with the team of doctors involved. He promoted some communication between them regarding my care and advocated for me. On that Friday, April 13th, they finally removed the catheter from my heart. I felt the doctor pulling it out, it was painful and very uncomfortable and stung at the very end but I was so relieved it was out. I was amazed that it was as long as it was and to know it was in my heart. My chest felt so much better. The next day, the cardiologist visited me and said the rest of the team wants me to heal as much as possible. They wanted to see if my heart would continue to heal and stay stable without doing the pericardium window. They did state that they would if it was needed on an emergency basis but wanted to give my body a chance.

That same day, Saturday, April 14th, he discharged me. It was a horrible snowstorm where the we got about 15 inches of snow. Lucky for me, Shayne brought the truck and got me home going 35 mph and it took an extra hour to get home. I was happy to be home. Since being home, my recovery has been strong. I got to be more mobile, more independent, and feeling good. I go to cardiac rehab three times a week to continue to get my heart stronger. The scar from my incisions have healed nicely. The last two echo cardiograms have shown good results.

I met my Oncologist for the first time April 17th. I honestly didn’t think I needed to see the oncologist, I thought they removed the cancer when they removed my kidney, tumor in my vein, adrenal gland and lymph nodes. I thought we beat it and I was done. That was not the case. My Oncologist, Dr. Rao said at my first appointment that he would like me to take the cancer pill treatment specific for kidney cancer. Due to me being on blood thinners and the heart medication, he said I could not take that pill. He wanted me to continue healing and keep getting stronger. My next appointment was May 2nd. I learned that the spots in my lungs shrunk in size since my surgery which is good news. I learned that day that my cancer stage changed, from Stage 3 to Stage 4. This is because the spots in my lungs are for sure cancer and there is also cancer in the lymph node by my heart.

I was mortified, shocked and sad. Dr. Rao stated there is a new clinical trial coming out and about to start in the next three weeks. He recommended to that lead research doctor that I be accepted into that clinical treatment study. However, I need to get off the blood thinner and heart medication or they’ll likely reject me. At this time, I’m waiting for my next appointment for the next steps. I’m thankful for the doctors, nurses and staff at the University of Minnesota Hospital in Minneapolis, Minnesota for their concern and outstanding care of my health. They have continued to follow up with me and my family. They are also quick to reply to emails and phone calls. Their care has helped me to accomplish some of the goals I set while in the hospital the first time such as go to my son’s prom grand march and get to some of my daughter’s softball games. Now we’re in the process of planning his graduation party. I’m also thankful to Dr. Lijewski from the Vibrant Clinic in Ellsworth, WI for being aggressive at trying to figure out what was wrong with me. Without referring me for the ultrasound, I’d likely not be here to write this and fight cancer. Thank you all for everything.

Q: What advice would you share with someone newly diagnosed with kidney cancer?

Joy: Stay strong!! Fight!!