Posted 6/4/2007 7:56 AM (GMT -6)
This is late in coming but I couldn’t make myself do it any sooner. We’ve move past that pain now and like Bluebird says, it helps to write about it.
My name is Susan – I post under the name “myman”.
Our Prostate Cancer Odyssey
Discovery 11/2005: Florida is home for us but our work takes us to many different locations, so at the time we were at work on a construction project in Maine. When we work these projects 12 to 14 hour days are required and anything resembling a normal life is not possible. After being without health insurance for a few years (long story – Enron) we’d just gotten coverage and Don went for a physical. He was feeling well but for a few age related aches and pains. The doctor, an internist, took a complete history and did a through exam. I stepped out while the DRE was done and when I returned he was telling Don he found hardness to the prostate and his blood workup would include a PSA test. We didn’t worry at that point as he had NO symptoms. Prostate cancer, well, we knew nothing about it.
A day later we got the results - his PSA was 7.76 and an appointment was being made with an urologist. We were away from home and didn’t know where we should go so we were grateful for the direction from this kind young doctor.
Within a few days we were meeting with the Dr. Gregory Adey, who did a DRE and wanted another PSA test. Once that came back at 7.96, he requested Don’s medical records and scheduled him for a biopsy. He called Don a day later with the results - positive for cancer – he brought us in the next day. He spent a long time with us going over the biopsy (GL 4+3) and the treatments available with surgery being the best choice for him. Don agreed he wanted it out, out, out! Dr. Adey called Moffitt Cancer Center in Tampa and had all Don’s records sent there for our first appointment. Dr. Adey was wonderful to us and that was exactly what we needed…being away from home and hearing such devastating news was extremely difficult.
Don & I agreed we needed to wait until we got home to tell our children in person. My God, that was hard – there was no way to be prepared for the fear and sorrow they felt. So after we cried and comforted each other we decided to get on with it. I think Don’s resoluteness gave them courage – I know it did me.
The Wait: We met with Dr. Julio Pow-Sang at Moffitt Cancer Center on 12/14/05. He examined Don, went over his records and talked with us in detail about LRP and recovery expectations. With Don’s numbers he seemed confident he would have a good outcome and he would spare the nerves, if possible. A surgery date was set and we settled in to wait until 2/09/06 . Yes, it seemed forever. I was fortunate to find Dr. Patrick Walsh’s book that helped us immensely. We kept ourselves busy with the holidays, fishing every chance we got and planning our daughters' upcoming wedding. Don was determined to walk our youngest down the aisle in early April.
2/09/06 LRP: Surgery went well – Dr. Pow-Sang felt the cancer was confined (the path report concurred) and he was able to spare one nerve bundle. Typical issues with the hatred of Mr. Hang, bladder spasms and the emotional impact (relief, disbelief and some sadness) were worked through and Don regained continence by April. Next came sexual function and as soon as he could he worked at that with some success! The doctors were very pleased with his recovery. So, all in all, we thought, “Yep, surgery was the right decision and holy cow…that darned cancer is g..o..n..e!” Don walked our daughter down the isle on April 8th and it was a beautiful sight to behold! Things were going right!
4/14/06 PSA: Don wanted to get back to work so asked if he could schedule his first PSA a little early and the doc agreed. I was upset by Friday thinking we didn’t have the results yet and even called the hospital to find out what the problem was...how could they make us wait like this??? I had to leave a message but I had no idea Don had received a call on Thursday but didn’t want to tell me. That Sunday was Easter and on the way home from a family dinner he told me…I’ll never forget it. PSA – 11.8 - it seemed unbelievable to me, to us. How could that be? It must be a mistake, I said, crying my heart out. Don tried to reassure me and said he has an appointment tomorrow for another PSA and an appointment with the doctor.
4/17/06 PSA: 12.9 Another meeting and tests ordered to be done immediately: bone scan, MRI of prostate bed, CT of pelvis, chest x-ray.
All tests results negative and Don’s case was brought before a group of doctors at Moffitt.
4/26/06 PSA: 13.9 Another meeting and the decision is this: not to treat until we see where it is. This made sense to us. How do you radiate what you can’t see? Don had just had surgery anyway. Hormone Therapy is mentioned and again…why begin a treatment when you don’t know what’s going on? It’s in his future but the decision is made to wait. By now Don needs to go back to work…anything to get some normalcy back in our lives.
Moffitt is in contact with Dr. Adey in Maine – he will continue testing Don and start HT when the time is right. So, we leave for Maine to work. Things are tough but work does help to distract and sometimes to be distracted is a good thing.
Dr. Adey makes appointments with an Oncologist and a Radiation Oncologist for Don. The Radiation Dr. tells us he’s sorry but there is nothing he can do at this time. The Oncologist spends an hour with us (we had copies of all records sent from Moffitt) very through and detailed. He, too, thinks it best to wait to start HT until necessary.
I understood but remember thinking “This is terrible – we’re letting this grow.”
6/26/06 PSA: 13.76 - Oh, it’s down a bit! But we realize that is such a slight difference, not enough to make any difference, really. More tests and some lymph nodes look slightly enlarged. Could be inflammation.
8/23/06 PSA: 18.85 – CAT scan of abdomen and pelvis show multiple distant lymph nodes are definitely enlarged – Dr. Adey shows us the test results and it’s obvious. The cancer is systemic and it’s time – the first 3-month Lupron shot is administered. Not knowing how this will affect Don and the difficult work schedule we have, the decision is made to go home. The first 3 months the symptoms don’t appear and we think – this is not as bad as we were told!
12/05/06 PSA: 0.8 The side effects kick in but Don is managing.
3/06/07 PSA: 0.3 Side effects are obvious – all of them. At times there’s a sadness, and how couldn’t there be? Still, Don is determined and he fights.
6/06/07 PSA: Once again - The Wait.
Yes, we’ve looked at different options, as you all know. We’re not second-guessing…we believe surgery was the right move for where we stood at that time. We’ve consulted with 7 doctors and they did not vary on what they said. It is what it is and it’s HT for now. We are okay with that.
But we’re not sitting around…Don plays bass guitar with our sons – one a guitar player & one a drummer. They built a recording studio. He works out 4 days a week. Don is an avid photographer and shoots video.
I was able to do my work from home, thanks to an understanding boss.
And did I mention we go fishing…a lot!
For a time we couldn’t talk about where we were in our odyssey…it was too difficult but we’ve gotten past that and here we are.
Swim, thank you for your counsel.
So, is life what we hoped for? Yes and no.
No – because who of us would ever have thought prostate cancer would be a part of our lives. But only a part of our lives…not all.
Yes – because we do have so much – a great family that’s growing and we’re involved in their lives. A loving marriage and a very good partnership. It takes some serious work but we’re getting through it.
So, we’re living by choice.
We wish everyone a full life and safe odyssey of their own,
Don and Susan (myman)