and today I had to go back for a platelet transfusion...as they had dropped to 18. My Neulasta Onpro went off at 6 pm tonight...and even then...(I'm taking Claritin) I am still feeling great all day. I do have incredible dry mouth and my taste is off. I tried sucking on ice a little. I also put ice on toes and fingernails. My latest PSA has jumped from 699 to appx 850. Gotta hope this works and it doesn't kill me with my low blood counts. I was advised to go another route by someone I really respect on here...it was to do the massive testosterone shots for 2 months and then 1 month of Xtandi and no testosterone....repeat...and hope for a miracle. My doctor was totally against it.
I asked her what she wanted me to do...and I said...well this time here's how it's going....
you've gone to medical school and YOU are the oncologist...so I am going to do what YOU think I should. If I die...it's on you. I'm tired of being my own specialist. I'm 8 years into this come Jan 14th...so I'm doing something right. My Primary care doctor had not seen me since early in the year (since I was away in Omaha for the LU-177) and he had seen my numbers and my scans...and I'll tell you his face was blank and he did a double take...and then told me he was surprised I was still mobile and not in a wheel chair. I was also given "hospice's number" on my phone on speed dial. In spite of that he said "I would never guess you had cancer from the way you look". I do want to last a lot longer...my puppy turns 8 on Jan 14th and I don't have anyone I think can love him as much as I do. *note he's been with me exactly since I found out I had the cancer.
I did ask my oncologist for oxycontin and she said sure....but you're not going to take an over dose and kill yourself she asked? I said no. She gave me 60 for a 30 day supply. I've been taking about one a week just for "fun"...I will say they make me feel GREAT.
I had someone on Facebook (and you might know I have been very honest on there with my diagnosis and my treatments....make his second comment in 8 years...about something I said....not relating to cancer. I wrote back and told him I wasn't thrilled with him...and he said "he doesn't share his personal stuff and health issues on Facebook...I unfriended him and left a long post about how many people have had their lives change....one a friend who after I was honest about my issues...he called me and said he had a very rare cancer call PMP and was on chemo. I went to work researching the disease and then told him to call a man I had met at the Moffitt Cancer Center (in Tampa when I went for a 2nd opinion) who had made me feel like he knew everything...I gave him his number and name...and he found a two hospitals in the U.S. that had doctors who preformed surgery (his doctor had said chemo until you die)...he contacted him...had the surgery and has told me that I am the reason he is alive. Being "discrete" is great...but helping people by being "open" is my path I have taken. I have made a dear friend in Las Vegas from a cooking group I am in...who when her husband was diagnosed with Prostate cancer she used my journey to help him... I don't feel like I need to change the world...but helping one person is enough for me. My Facebook page is open for everyone to see...you never know who can be helped or inspired by your words, your photographs...or your poems.
I hope my next few days don't get harder...it's been a breeze so far. The 1/2 dosage I am doing is probably the reason.
Best of Luck to all
p.s. photo is of my "beard check" the morning before I left for this chemotherapy. I have been doing them on Facebook for the whole 8 years. I lost all of my beard down to just the mustache and goatee and a little eyebrows....I hope I can hold onto my goatee and mustache(my mustache doesn't grow...it just stay there. I still have to trim the goatee every few weeks.