My Journey as a Caregiver to My Husband Dick Wheeler
Hi, my name is Sheila Wheeler, and this is the beginning of my journey as a caregiver to a kidney cancer patient.
My husband, Dick, was diagnosed on November 28, 2009 with renal cell carcinoma clear cell cancer. His cancer was found by another procedure. He had a cold and a cough that would not go away. On November 9, 2009 (his birthday) he went to the doctor. The doctor thought it best to do an x-ray of his lungs. He went to the lab for the x-ray, and by the time he returned to the doctor’s office, the doctor was looking at the x-ray. He brought in a pulmonary doctor. They both concurred that their belief was kidney cancer. This was Dick’s 63rd birthday. He told me what the doctor had told him and I was in complete shock. What was kidney cancer? I didn’t know anything about kidney cancer and I did not know anyone who had kidney cancer. It was a new cancer for me. Our internist ordered a CT scan and referred us to the oncologist. We met with him, and he scheduled a MRI and a lung biopsy. We had to wait for a few days for the results. It was agonizing and still more questions. Finally, on November 28, 2009, we were given the official word, Dick was diagnosed with kidney cancer and it had move into both lungs. I thought, oh no, now we have kidney cancer and lung cancer. The doctor started to explain to me that Dick did not have lung cancer; he had kidney cancer of the lungs. I thought ok, we will do chemo. When I asked about chemo, he said normal chemo, as you know it, will not work on kidney cancer. He started by explaining that they wanted to do something that was not normal. I thought, oh no, not something else I don’t understand. He explained that there have been 4 drugs introduced since 2006. The drug of choice was Sutent. He wanted Dick to have 2 months of Sutent. He said that he wanted to try to reduce the cancer in the kidney and the cancer in the lung before they did surgery. He said there were more than 30 mets. Ok, let me think! He has a cancer tumor in the kidney that's 5.3cm and the largest met in the lungs was 22mm. I am hearing words I’m not familiar with, and trying to take notes like crazy. Needless to say, I’m thinking to myself, what next. We started on the Sutent and the "what next" was really scary. His blood pressure was extremely high, no taste, blisters in his mouth, blisters on his feet, and everything else that comes along with this devil pill. I was so nervous that I took him to the emergency room due to his blood pressure being so high. When we told the attending physician at the emergency room what medicine he was on, they looked up the side effects. The doctor came in and said there are so many listed side effects that I’m not sure where to start. He said he was going to get the oncologist on the phone. Ok, if the doctors don’t understand this medicine, it’s ok that I still don’t understand everything going on. We finally finished the first month of the Sutent. The two weeks off was wonderful. Then, it was time to start the devil pill again. I must admit, by this time, I was starting to get answers to my questions. The second month was much easier, as I had gained knowledge about kidney cancer ~ what it is and what to expect for the second round of Sutent. During these two months, we were referred to our urologist. One more doctor and probably more words that I don’t understand. He was a bit less confusing as I am learning more words and what they mean. I’m on a roll now! I know that we are going to remove the right kidney and the two rounds of Sutent were given so that the cancer would decrease in size. Now it’s time for another CT scan. Oh, I forgot to mention, this was the first time either doctor had given Sutent first and then the surgery. When we got the results of our scan, it was YEA, IT WORKED. The cancer in the kidney had decreased to 3.2cm. That was a reduction of 40%. The lungs had decreased to 10mm. That was a reduction of 50%. This I understood; but now it is time for the surgery. The urologist advised my son and I that the surgery would take from 5-7 hours. I went to the hospital prepared to spend the whole day in the waiting room. In 3 hours, they called our names and said your doctor will meet you in the conference room. My legs almost failed me. It was too soon for them to be finished. I could not help but think, Oh God what is wrong. When I saw the doctor he had a smile on his face. I thought, ok, if he’s dead, the doctor should not be smiling. He started to explain the surgery. He said the surgery was textbook - perfectly by the book; the Sutent had cleaned up the area around the kidney, and it looked like a virgin kidney; he did not take any lymph nodes, but removed the adrenal gland; when they opened the kidney, it was full of dead cancer - meaning the Sutent was definitely working; Dick did real well; they were pleased that he did not have a long surgery due to the mets in the lungs. In 3 ½ days, Dick came home. He is now doing great. He has had some pain, but after all, he had major surgery. We re-start Sutent on April l2, 2010, this will be his third round of Sutent. I know this will sound crazy coming from a woman that just 4 short months ago knew nothing about kidney cancer or Sutent, but I am anxious for him to start so that we can begin our journey to rid the lungs of the remaining mets.
Now, I need to thank the people that have gotten me this far on my journey. Dick found a site on the internet called Kidney Cancer Association. I started to read everything that I found on the site. I was desperate for information as this was my husband and he is a father and a grandfather. We (Scott, Carol, Mark, Ty and myself) needed him to be ok. Dick said he found a chat room that was associated with the Kidney Cancer Association. I found the chat room also and in that room was the most wonderful people anyone could want to meet. They helped me with the new words, new procedures, new meds, and answered any question I asked. If they did not know the answers, they found out. I have spent many hours with these people asking questions, crying, laughing, and just generally getting relief from the pressure of this evil thing called kidney cancer. The medical support at the hospital/clinic is very good, but if you don’t understand what you are reading, it can still be intimidating. The information I received from the people that have walked in my shoes has been the best information I've received. They have been exactly where we are and understood that initial feeling when you meet with the first doctor that tells you that you have “kidney cancer”. I’m sure that I was not the only person that needed information when they discovered the disease. Leigh, Pam, and Allen, you guys have been my rock. May God bless you and keep you in His hands through your/our journey through this thing called “kidney cancer”.
Written By: Sheila Wheeler
