July 2010: Jill Maeder (Jill_44)

Featuring and Written By:
Jill Maeder (Jill_44 on KCW/Chat)

My name is Jill Maeder and this is my Kidney Cancer NED Story.

In the summer of 2009, I was a busy mom of 2 very active boys. I was working 2 part-time jobs, one as a Physical therapist in a busy outpatient office and the other as the program director for our church. I had been married to my husband for 21 years. I was the committee chairperson for the local Boy Scout troop, and busy organizing fund raisers for local non- profit groups. We lived in a very rural town in the northwest corner of Connecticut, in a town without a gas station or stop light. Life was good. At 44 years old with my busy life, I started to gain weight and stopped exercising as it was time consuming and tiring. I was tired all the time. I would come home from work at 12 noon and take a 2 hour nap. I explained this away by being on the go, all the time. I hadn’t been to see my OB-GYN doctor in 1 ½ years mostly because I was embarrassed about my weight and I was afraid he would be angry at me for my high cholesterol level. I blamed my hot flashes and night sweats on pre-menopause. Finally after taking to my co-worker whose 48 year old daughter died of ovarian cancer from not having her pap test regularly, and my own family history of breast and ovarian cancer, I went to see my OB-GYN for my yearly exam.

Everything went well with my exam, but 2 weeks later I got a letter that my blood work was off and I needed to see my regular PCP. Strangest thing, my liver enzymes were high. I am not a big drinker, so this was strange. I went to my PCP who ordered blood work to check for Hepatitis. One test came back positive, which led to more test, but all were negative. My PCP ordered a US of my liver and abdomen and they found a mass in my R kidney. He was not going to pursue the mass and wanted even more blood work for the hepatitis. I called the office and spoke to his associate who agreed to perform a CT scan as well as more blood work. I had my CT scan on Friday Aug 21, at 9 am. They asked lots of questions, but again, I thought they were looking at my liver. That evening at 6 pm, my PCP called me and told me I had a 5 cm tumor on my R kidney and that it was cancer. He told me he would set up an appointment with a surgeon on Monday and hung up. I was in shock. How could I have cancer? I was a healthy young woman with so much ahead of me. I spent the weekend with my husband gathering as much information as possible, talking to friends who are nurses and searching the internet.

On Monday morning, I called the office to find out when I could see the surgeon, and was told that the earliest they could get me was Thurs. I begged for something sooner and was told that it could wait. You should have seen how red my face was. I was beyond angry with how I was being treated. I called my friend who is an oncology coordinator and she was able to get me an appt the following day with the local urologist. I also called my OB-GYN and he personally contacted Dr. S. at Hartford Hospital in the middle of 2 deliveries and a C-section and got me an appt also on Tues.

I picked up my CT scan CD to take with me to my appt and learned the location and size of the tumor. It was 5 cm in the lower pole of the R kidney but not outside of the kidney. So, off I went to meet with the surgeons that will cut this monster out of me. The first surgeon met with me before office hours and told me everything would be okay. He was extremely reassuring to me and my husband, but he also wanted to take up my whole kidney at our local hospital. The second appt with Dr. S was later that afternoon. He works at a teaching hospital and uses the Da VInci robot to do a partial laproscopic nephrectomy. I choose him partly because of his skills and frequency of this particular surgery. He also looked at me as a woman who was going to grow old and needed the extra kidney to help if diabetes of kidney disease set in. I asked” when can you get this thing out of me?” He looked at his schedule and looked at me and asked “ is Next Wed a holiday?” I said no, but it is the first day of school. His whole day was open and in a busy practice that I usually would have had to wait 6 weeks, I was going to have the surgery in 7 days. There was a lots to do before surgery. Bone scan, Chest CT scan and physical to fit in quickly. All while getting the boys ready to go back to school, buying school supplies, organizing who would be at the house to see them off on their first day at school. I needed to tell my employers that I would need time off and reschedule all of my patients. I drove the boys half way to Maine and my mom came down to pick them up, so they could have a mini vacation with their grandparents. I had my bone scan and CT scan on Thurs and went to have my physical on Friday. My bone scan was clear, but my Chest CT showed a unknown mass in the sternum. My fear escalated through the roof. I thought that my cancer had already metastasised and knew that Grade 4 kidney cancer was a scary thing. My husband and I drove to Maine to spend the weekend with my parent for a family reunion with this terrible new hanging over us. I cried and cried and cried and prayed and prayed and prayed. I returned for my pre-op visit on Monday and signed all kind of forms including a consent form for my tumor to be part of a research project. My husband and I arrived at Hartford hospital at 5 am Wednesday morning. My sister, Lynn, who lives in Florida was in Maine visiting my family and agreed to stay with my family for a few weeks during my hospitalization and recovery. So, she was able to take care of getting my boys off to school. While waiting for my surgery, it seemed like hours waiting for the nurses to notice me. Then a flurry of activity occurred, to start an IV, take blood, review the procedure. Finally, I was on my way into the OR. My husband got a phone call about 2 hours into the surgery for clarification. I am not a vain person so I was very clear that a big incision across my abdomen was not a problem for me. The doctor wanted to make sure that converting the surgery to an open procedure with an 8 inch incision was my preference in order to save the majority of my kidney versus losing my entire kidney and having smaller incision. When I awoke in the recovery room, they inserted an epidural catheter for pain control and I was able to see my husband. They kept me in recovery for an extra amount of time as I had lots of pain medication that I had trouble processing out of my body. My hospital stay was 5 days with only a few difficulties. One of the problems was a lack of communication with my epidural. It was supposed to be removed on the 4th day but was not. So on the 5th day it was removed at 10 am and I was discharged at 5 pm. I was given oral pain medication, but I did not truly know how to control my pain and was not really taught that. So when I went home, I did not take the medications correctly and therefore, did not sleep for 3 days and cried a lot. I called my surgeon to ask if the pain level was normal and they had me have a CT scan worried about bleeding or other surgical problem. I did have a 9cm collection of fluid (blood vs. infection). My doctor then explained the whole concept of pain control through medication. This is one area I had no prior knowledge. Both of my children were natural childbirths and I have only ever taken Tylenol or ibuprofen.

The best news of this entire ordeal was that my cancer was at stage 1b being that is was 4.3 cm and Fuhrman grade 2. It was totally encapsulated in my kidney and the margins were clear. No further treatment is needed. Just watching for any further problems, I was to have follow-up scans in Jan. and then again in a year from diagnosis. The mass in my sternum was found to be a thymic cyst and will be followed up in a year.

My recovery at home was normal, once I had the pain under control. My church was wonderful, providing meals every other day and people to stay with me once my sister returned to Florida. I started walking to get back my stamina, one telephone pole at a time. After 3 weeks, I was able to drive. After 7 weeks, I returned to work. The physical healing is mostly over now, 9 month after this ordeal began. My abdominal CT scan (with contrast) results from Jan show normal healing in my kidney and no new area to worry about. I am due for both chest and abdominal CT scan again in Aug.2010. My blood work in Jan showed that my kidneys are functioning normally. My liver tests are almost back to normal. They were elevated due to a para neoplastic syndrome associated with kidney cancer. My cholesterol is slowly improving as I am eating better, more fruits and vegetable and fish. I continue to exercise 3-4 times a week but I no longer have to count telephone poles, usually miles either on the treadmill or outside in the beautiful peaceful nature. I am trying to eat and buy healthier foods including organic meats and produce.

But the mental aspect of this disease will always remain with me. Even though, I jump for joy and praise God each day that I am currently NED, in the back of my mind, I know that there is a small chance that this cancer could come back. I have a wonderful family and group of friends, but very few of them have had cancer. And kidney cancer is rather rare, so support groups that discuss it locally are not available. The internet chat groups, ACOR list serve and face book have been a wealth of information and support. I am usually a straight forward person. As a Physical therapist, I have witness a great amount of suffering and pain in other people; I am brutally honest with my patients about their disabilities even if they are not pleasant. I looked at this disease as a process. Take it one step at a time, learn everything you can about the disease, surgery, treatments, medication and make an informed decision with your doctor. Currently, I am being treated by my PCP for any medical issues unrelated to my surgery. I do not have an oncologist at this time, but I have the name of a specialist at Yale NH Hospital if I need to see someone. Am I scared?? Every day, and especially on days where I feel especially tired or stressed or feel nauseated or my legs swell. Any of the symptoms that I had prior to my diagnosis that surface again will cause me to worry. So almost a year after this journey began, I am still a busy young mom of 2 boys, married 22 (almost 23) years. I still live in a small rural town in Connecticut, but now I only work 1 part time job as a Physical therapist. I still try to do as much volunteer work as I can. I exercise regularly and eat well. My life has not really changed because of this diagnosis but I have. If nothing else comes from this posting of my story, If just one person reads this and says, I have some of those symptoms and visits their doctor early than I did, I will be happy that I could help someone else.

Jill Maeder
Conneticutt