Posted 8/12/2009 5:09 AM (GMT 0)
Hi everyone -
I've been 'lurking' here for a week or so now, and I really appreciate all the valuable information and support that's being provided here ... it's been very helpful for me.
So, this is my dad's story. And, in it, you'll also hear the story of my frustrations in trying to stay in the loop about his disease and be a supportive son.
My dad is 74 years old, and is currently diagnosed with HRPCa with bone mets. The first indications that anything was a problem was in early 2007, when my dad developed a problem with some swelling in his leg. As this continued, he dropped out of contact for a couple of months. I came to learn he had gone to the Mayo Clinic, where he was diagnosed with metastatic prostate cancer. At the time, it had spread to two lymph nodes in his pelvic area. I did not find out what was going on until approximately a week after he had returned from the Mayo. I was very upset about the fact that he'd kept me out of the loop, but we had a good conversation about it, and I felt that conversation led to some positive changes and increased openness in our relationship. He made the decision to spend the summer in Rochester to get treatment at the Mayo, and I drove out there with him, which was a fun trip for both of us. He returned to his home in southern CA in August of 2007.
He started Lupron treatment in March of 2007, and responded very well to it, with his PSA score dropping below 1 and no significant side effects from the Lupron. For some time, things appeared stable. My father had told me initially that the Lupron treatment usually works for 'several years', so I had imagined there would be little to worry about, and I didn't do the research I could have, which would have helped me realize that we were probably looking at more like 2-3 years before it stopped being effective.
Earlier this year, my dad again mostly dropped out of contact with me. I had thought it might have been related to a difficult discussion we'd had a while before that, and had no reason to suspect there was anything going on with regards to the cancer. I had gotten a nice email from him in June thanking me for the Father's Day gifts I'd sent him. Then, in mid-July, he forwarded me an e-mail he'd sent a friend related to some recent developments related to his cancer stating that 'the past couple of months have been a bit rough'. This was the first indication I had that there were any changes with the cancer. I attempted to phone him, and was unable to connect with him for a couple of days. In the meantime, I received a phone call on my work phone from one of his college roommates saying that he thought I might not be aware of what was going on with my father. This roommate had to look me up on the internet to find my office phone number. I spoke with the roommate, who gave me the information he had, and a day later, I finally spoke with my father and was able to get an update on what had happened:
His PSA had apparently been rising again, at first slowly, but the most recent PSA result was 111. It was discovered that he had bone metastases, and he had been in significant pain related to them, leading to the decision for a 14-day course of radiation treatment, which was apparently very helpful. He was hospitalized for a time, apparently had a liter of water outside his lung, a low platelet count, and ended up getting a substantial blood transfusion (eventually 4 pints, I believe). He is currently prescribed Vicodin to help manage pain. After discharge, the plan was to start chemotherapy with Taxotere, but they were planning to wait a week or so to allow my dad's oncologist in California to consult with his oncologist at the Mayo clinic. There were some issues in getting information to the Mayo, and then in the Mayo getting in touch with my father. He had planned to go ahead with starting chemo last week on Thursday, and told me he was going to be in the hospital a couple of days. I spoke with him on Sunday and learned that he had not had chemo, but another blood transfusion instead, and that the chemo would happen this week instead. He also said he'd had a 'long talk' with his CA oncologist, and that the oncologist had indicated my dad had some kind of blood disease in addition to the chemo, and his thought was that it might be more important to focus on treating the blood disease right now. Somewhere in the conversation, the MD told my dad that he might have "weeks or months" to live, which my dad seemed somewhat dismissive of. My dad was unable to remember the name of the blood disease when I talked to him, but I know he's had two blood transfusions, issues with low platelet counts, and that he was given a shot before leaving the hospital to help boost his WBC count. During this conversation, my dad also talked about his discomfort with his oncologist in CA. It sounded at that time like my dad anticipated speaking with the Mayo on Monday to get the second opinion and he said he'd follow up with me via e-mail.
Having not heard from him, I called him today. He said he was "feeling really good", so he'd decided not to start the chemo today, but to put it off until next week, and also indicated that he is now planning to switch to a different oncologist, due to his difficulties in communicating with his current oncologist. He still has not talked to the Mayo, and seems pretty unconcerned, saying "it's not that urgent right now".
My father has always had difficulty acknowledging his vulnerability. I have yet to ever see him cry, and the two times I've heard him cry were after deaths of important people, in both cases he shut himself down very quickly and wouldn't discuss it further. He has told his friends he 'doesn't want to burden me' with the details of his disease, even though I've made it clear to him that I am here to support him, that I care, that it's not a burden. I am also his only living first degree relative. We have always gotten along well, though I wouldn't say we've been very close.
I am very frustrated. I have so little information that I really don't know what to think about the state of my father's disease. I know that the fact that he has bone mets is not good, and I understand that chemo is generally considered the standard of care for this situation, and I see wildly ranging estimates of life expectancy from this point. I know nobody can give a good estimate, but I have a tremendous fear that my father will die and I won't be there because I was unaware of the level of progression of his disease.
I also worry that my father's minimization and denial will not only shorten the length of his life, but the quality of it. I fully recognize those are his choices to make, but I am struggling with acceptance of them.
Lastly, my wife and I are expecting our first child next February. I have not told my father yet, and I don't know whether or not to do so. If I had a high level of confidence that he would survive another year or more, I would certainly tell him. If he is going to die within the next few months, I'm disinclined to tell him, as I hate the thought of him dying knowing he will have a grandson that he'll never meet. My wife feels we should tell him, my friends are mixed. I'd certainly appreciate input from folks here.
Any thoughts or input from members here would be welcomed and appreciated. Thanks!