One man’s question prompts an understanding of when enough is enough and one couple’s decision to stop treatment.
I have always said that every patient’s journey with cancer is personal. Each case is vastly different. The spectrum of patients’ responses to androgen deprivation therapy (ADT) is astounding. For some men, the side effects are barely noticeable and they are endured like a few nasty mosquito bites in summer. Others are driven to near despair and disability by the side effects. Most of us swing like pendulums somewhere between the two extremes. Outsiders, with the big exception of our caretakers, cannot comprehend what it’s like.
My first correspondence with Laurie and her husband, Rommie was in December as I was was coming off of my radiation treatments. (Funny how we now measure time, isn’t it?) Laurie and her husband were working to start a prostate cancer band. Just two quarterly shots into ADT, I was a mere newbie to the Lupron experience back then.
Last week, I heard back from Laurie. She shared with me that Rommie has decided to stop his hormone therapy, that he can no longer endure the hard-hitting side effects he has experienced. In short, he wants to be the person he was before treatment started.
As I read Laurie’s email, I fought hard to hold back the tears. I can’t say I won that battle. I related, in part, to Rommie”s thinking. Admittedly, I have on more than one occasion, wondered why one endures this treatment if there is no guarantee of a positive outcome. Such thoughts can creep up when one’s emotional stock runs low. Although speechless, I was taken by their courage.
Once I had a moment to digest the correspondence and collect my thoughts, I wrote Laurie back and asked if I could share her letter here on the blog. She and Rommie replied with a quick yes, so here it is. It underscores my belief that on this journey, there are no right or wrong answers–only the need for understanding and support.
Rommie and I met in 2005 at the young age of 51. We both had previous marriages, that ended. I raised my five kids on my own in CA after a 20 plus year marriage. Rommie has three children and lived in NV when we first met. I had gone back to school and during one of my evening classes my young classmates told me I should consider online dating. After all, I was the director of my own licensed daycare…my choices were nil and oh yea–they were all young married couples! But I went to Perfect Match.com where I met Rommie. I was hooked by his sense of humor in his very first response back to me.
Rommie had spent 12 years in the Navy and worked on airplanes as a corrosion control specialist. He didn’t think he had a chance at dating again, because he wasn’t the refined business man with all the fancy credentials and assets in life. Our first date was magical, spent the day at Dana Point, CA watching the ocean and talking about our entire lives. His heart was so big, and he was such a good man who thought he might not measure up because he drove a truck. I laughed and said measure up to what? You know that saying…at the end of your life, does anyone say, I wish I could spend one more day at the office? No…it’s one more day to be with those you love, and doing what you love. Career and economic status didn’t matter to me at all. A good man, a hard worker, the Heart of a Man was what I was looking for. I found him!
Then, in June 2009, Rommie was diagnosed with prostate cancer. He was put on the hormone therapy prior to radiation. A three-month Lupron shot was his first treatment. He then underwent 43 treatments of radiation and finished two days before Christmas. He has been on ADT since. He just landed a new welding job and works 10-12 hours, comes home with his rear dragging, we have dinner together, and he falls asleep. The fatigue has been grueling, then the insomnia rears it’s head at the wrong time…he never had any problems sleeping at night. That is just one of the negatives he has been dealing with. We are both 57 now and we know there are many, many more years left.
Hopeful? Yes! Optimistic?! Of course…you must be.
Although is hormone therapy devastated him, and Rommie never once complained.
But finally, he came to me one night, riddled with some guilt and feeling a bit selfish, and said, “Let’s talk about something important.” After 43 rounds of radiation and in the last phases of ADT and witnessing too many side effects and changes to his person, I was prepared for anything. Rommie told me, “it’s time to stop the shots, I can’t do it anymore, honey.”
I just sat there and listened. He went on to say, “…whatever the first shot did to keep my prostate small and prepare me for the radiation, probably did the best job it could. I think I have been zapped enough, for now.” He explained, “I feel like I have morphed into something, someone that I don’t know… something that doesn’t feel good, that keeps shouting for the real guy to come back. ” He said, “I have been zapped, fried, targeted, and tattoo-ed. I have grown larger breasts than our daughters and my hot flashes rival all of your friends. I have coped with depression, taken the medication and still fall to my knees with a despairing feeling of remorse. I get foggy headed over nothing, and can’t remember why because of the memory loss.”
By that point, my tears started streaming down my cheeks. He held my hand and looked at me, really looked AT me and said, “I want, no I need, to live my life with you and for US, again, the best way I can, without the rest of these chemicals that deter me from living a better life.” It’s not that he doesn’t believe in medicine, and its great power to heal, it’s just that he believes in a chance to live a better life right now.
He asked, “Is it selfish of me to want myself back again? ” He asked me if I would support this decision and still love him. I am his wife, partner, lover and friend. The quality of life for my husband and thousands of others, hanging on a thread of hope, promise, uncertainty, or faith in miracles is not for me to judge, but to pray and support their own decisions about their healthcare. I believe in greatness, and I have tremendous faith and hope that good will prevail. I am the glass half full person, and my husband has always been a believer of the glass half empty. So when Rommie decided to live his life with a “full glass” I cried for his courage, bravery and moment of reckoning. Men know their numbers, and that’s what got to him after a while: Gleason 8, stage 3…he said “I am much more than that.”
He bought a bike and soon I will get mine. We are eating healthy, choosing to exercise more, and learning to live with less stress. We are also staying positive, maintaining a more optimistic outlook, which is believed by many to change the structure of cells for the better.
It’s not rocket science but it is our human experience that makes us live better lives. Ironically the ADT was causing tremendous stress, something cancer doesn’t need. I just wanted to share this with you, and hopefully let others know, they aren’t alone with these thoughts. It’s a gamble…life can be a crapshoot of sorts and we don’t recommend this decision for anyone else. This is what Rommie has decided for his own health, and for our lives together. He wants to breathe in life every day and live it the best way he chooses. He says he feels so “free” for taking back his life again.
Will this new attitude beat his cancer any better than continued treatment? Who really knows? But it will improve his chances to be happier, more productive, and live a more fulfilling life. He knows what is most important, and I support this great guy, for being true to his feelings.
Thank you, Dan, for your interest and support. A group hug back to you! Love and prayers for you too. — Laurie and Rommie.
Bless you, Laurie & Rommie. Our prayers are with you.