Posted 9/10/2015 10:21 PM (GMT -6)
Tuesday my husband and I went to UCSF to see what they might have to offer. My husband's oncologist here at home had given us "the talk" about a month ago, saying there was nothing more he could do. Not wanting to accept this, we went to UCSF for a second opinion.
We saw two doctors who work under Dr. Eric Small, and they were outstanding at taking time to talk to us. They pretty much explained every treatment there is, why my husband never qualified for some, and why others didn't work for long, etc...
My husbands cancer is pretty much in every bone, his lungs. liver, dura mater, and lymph nodes.
His treatments have been: Lupron/Casodex/Xgeva, Taxotere (minimal, 6 rounds), Xtandi, Provenge, and has recently had radiation on his spine and dura mater to relief symptoms.
In July my husband lost his ability to walk and has been getting weaker. i feel like he is deteriorating before my eyes.
We left our appointment at UCSF with pretty much the same message that our local oncologist has had, it just happened to be wrapped in a little prettier paper. My husband did not qualify for clinical trials, except for a phase I study that was going to study his DNA, and he would receive some more chemotherapy at the same time. Did not sound too promising, plus we live 5 hours away. I am afraid it would just be too taxing on him to make that trip often. They shot off an email to our local onc stating that "even though they did not believe it would add to the quality of life for the patient, they would suggest more chemotherapy with platinum if the patient so desired". I have read about platinum, and it has awful side effects. Tomorrow we go see our local onc and will come up with a plan.
My husband is my rock, my love, my life ... I can clearly see I am losing him. As much as I want him with me, I would like it to be as meaningful and without unnecessary sickness as possible. I am so confused, I am having a hard time voicing my opinion to him. How do you tell the love of your life that you don't want him to get any more treatment? How many doctors need to tell us that enough is enough ... so far we have had three tell us. In mid July he was working every day in our business, going down waterslides with the grandkids, going to the beach, barbequing in the backyard .... today he is wheelchair bound, I have to lift him from wheelchair to recliner, recliner to hospital bed, to handicap potty. He has always been a very loving person, but not an overly emotional person ... now he cries several times a day, especially when he has to be helped to move. He wants to live, but I know he also includes in that wanting to get rid of cancer and regain the ability to walk. This disease is a beast. When he was diagnosed 17 months ago (April Fools Day, 2014), we were told he was terminal and now on paliative care ... but being the person he is, he never caved ... we worked, played, went whale watching, chased a bear through the woods, watched his beloved Padres play, and enjoyed all the holidays with our family. I feel blessed for the time, but it still doesn't seem like it has been enough. People do not understand how terrible prostate cancer can be, so many times he was told, "atleast you got the good cancer", by well meaning (uninformed) people. I am praying and sending positive thoughts to everyone here who is fighting this, and to those who love those who are battling this beast, and to those like Sue, who just lost the love of their life. Tonight I am sad, I am tired, I am not complaining, but those who have been a caretaker, you know what it takes. Right now as I type this, I am waiting for his suppository to start working, because now it has been a week. It is just really tough. I am now rambling, from fatigue and stress, so I will close. Love to all, keep fighting, and remember that NO ONE FIGHTS ALONE!