Prostate Cancer Caretaker & Advocate: My Personal Journey

Women are touched by prostate cancer everyday as wives, girlfriends, mothers, sisters, and daughters of men who suffer from this disease. Sherrie G. Ellenburg’s husband, Kenny, died of prostate cancer in 2005. Sherrie was his caretaker and advocate during his diagnosis and treatment. After his death, she continued to be an advocate through public speaking and serving on the board of Women Against Prostate Cancer and volunteering for the Prostate Cancer Coalition of North Carolina. In addition, Sherrie herself is a cancer survivor. 

She graciously shares the details and advice about her journey as a wife and caretaker. 

Denene Brox: Can you share some details about your husband's prostate cancer diagnosis? Did he experience symptoms or was the cancer found in a routine exam?
 
Sherrie G. Ellenburg: Kenny and I were married on June 17, 2000. Very early in our marriage, Kenny began having problems.  As a new couple it was really difficult to think about but we had to face the fact that he was having some problems. He was experiencing difficulty maintaining an erection as well as continued back pain. His physician decided to try testosterone patches (lab work showed low testosterone), Viagra, and pain medicine for the back pain. As time progressed, he began having more problems:  hip pain, difficulty urinating (slow stream) and later frequency. We were really concerned about the hip pain as he had underwent a total hip replacement shortly after our marriage and should not be experiencing that type of pain.  By the time he was diagnosed he was getting up during the night every half-hour!  
 
While it now seems amazing to sum this up now and not realize there was a serious problem then, but truly there was no medical indication of a problem. Kenny had yearly exams and yearly blood work -- all were normal.   

In looking back, I realize that the symptoms separately were not concerning to the doctor or even to us.  But I think what may have changed the course of his treatment was if I had been going to his doctor visits with him all along. Men are notorious for going to the doctor and telling the doctor the "problem of the moment" so to speak. Women, on the other hand, lay all the cards on the table. Much later I learned to go to all the appointments and learned that it was necessary to make sure he told everything. It wasn't that he was hiding anything from the doctors. It was just that he would forget or he would perceive it differently. Sometimes we see our health problems in a totally different way than it truly is. He would also go to my doctor appointments, too. We made each other accountable to the other and we received a lot better care after that because we didn't forget to tell something.  And, if I couldn't go for some reason I sent notes with him...he really loved taking notes from his wife to the doctor!  
 
One day I noticed that it sometimes took him 20 - 30 minutes just to use the bathroom before we would leave to go out. I insisted he make an appointment with his family doctor for a follow-up. At this point he was referred to the urologist because of the continued problems. As well, he had an elevated PSA at this visit which had never happened before.  
 
At his first urologist visit the doctor misread the report and said there was nothing to worry about. He gave Kenny a prescription and said to come back in six weeks if he was not any better. Kenny did dispute the results of the lab results and asked the doctor to review again. The doctor did review again but still stated nothing to worry about -- just an infection but nothing to be concerned about. A couple of days later I insisted he go back to the doctor because he had not had any relief. The doctor changed his medicine and said the same thing: Come back in six weeks if you are not any better. A day or two later I am still waking up with my husband every half-hour but there is one difference: I have to work 12 hour days and I am exhausted! I need relief, too. So, I call the doctor and request a second opinion with a particular doctor that I am told will not be in the office.  This was not the day to mess with me!! I told the receptionist we would be in the office the next morning and would wait until he came in. Fifteen minutes later I received a call with an appointment time. One week later he was diagnosed with prostate cancer.  
 
One problem I had with the first doctor is that Kenny did ask if it could be cancer. Kenny had a very strong history of cancer in his family and was obviously concerned. The doctor told him not to worry about that because he was "too young" and did not fit the "criteria.” However, he later told Kenny that he would never make that mistake again.  He stated to him that his case had changed his whole way of practicing medicine. For Kenny and myself it made it all difference to hear those words. That was all that he ever wanted was to know that what he went through had helped just one person!     
 
DB: Since your husband's death in 2005, you have been an advocate for prostate cancer. Tell me about your advocacy work and why it's so important to you. What message do you want to share?  
 
SGE: As I said, Kenny wanted to know that what he had gone through had helped just one person. That was important to me to continue what he had started.  As soon as he was diagnosed he began telling his friends his story. He kept his friends and family updated through email of how he was doing, doctor appointments, etc. I guess in a way it was kind of a journal of his journey through cancer. I didn't even know he did it until much later (I wasn't on the list...how funny is  that?). After his death, I was encouraged to attend the group support meetings. 

One group sent me their yearly calendar and asked my opinion of the schedule for the next year. So, I told them that I was disappointed that there was nothing that focused just on the women. It was all focused toward the men but the women are the support and according to reports most married men (or men in a relationship) have a higher survival rate. This tells me that the women are the backbone to surviving cancer! So, why not give them the same support and honor by helping them learn to cope with the disease? Boy, I did not know what I was stepping into! The next email I received was a request to lead the seminar for Prostate Cancer Awareness Month in our local area. It was a small group but I enjoyed it very much even though I was terrified. I still enjoy speaking to groups about coping and my experiences. I began with one meeting in September 2006 and now am a national board member of Women Against Prostate Cancer. As well, I have worked with the Prostate Cancer Coalition of North Carolina on several projects.  The work that I have done for these organizations has given me strength during the past few years to move forward.  The work has been a life saver for me!  I have meet so many fantastic people through my advocacy that I consider true friends that I can count on whenever I need a shoulder to cry on or ear to sound off to.  
 
DB: What advice would you offer to other women who have a husband or close family member battling cancer?  

I think the best advice I can offer is to be patient. While it is so hard to put in action it is actually what they need the most.  Let them know how much you love them and care about them, but let them have their space to learn to accept the disease and to deal with it. As a woman, we want to fix things. We want to talk about our feelings. Men aren't wired that way, unfortunately. That's when you are going to have to be really patient but learn, too, when they NEED to talk. And, believe me, you will know the signs; snippy, behavior is a good first sign. Sometimes you may have to push a little to get them to open up. My husband would get so mad at me but then he would tell me later that he really needed to talk and was glad he did. Sometimes it's a no-win situation and you have to realize that. 
 
DB: What has kept you strong through this experience? 
 
SGE: I have a very strong faith in God, but it has still been very difficult to learn to live without my husband. He was my rock, my support, my first love -- my everything.  He died August 3, 2005. Without him in my life it has been difficult to go through life's trials. On October 14, 2005 I was diagnosed with ovarian cancer and it was a long recovery for me without him with me.  I learned through it all, though, that I have more strength than I thought possible I have learned to take every day as they come and appreciate them more.  When I down and out, and really missing Kenny, I read Jeremiah 29:11: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." I do not know God's plans for my life or why Kenny is now gone, but I trust in God and know that he has a plan for me.  This gives me the peace that I need to enjoy each and every day.

I have now been cancer-free for four and a half years.