It has been quite a trying week for both of us.
First was the news that my psa has risen from 35 to 63.4, not what we were hoping for...
We saw Dr T on Tuesday at BCCA. I was very tired following the MRI on Monday. I had to lie on the examination bed so I wouldn’t faint. Dr T said that the MRI looked ok but he doesn’t have the complete report yet. We discussed the rising psa and he said it looks like perhaps the radium is not working, however he would like me to continue with the radium treatment. We discussed my fatigue, apparently radium does not usually cause such fatigue. Next it was up to the lab for more blood tests and an ecg (electro cardio gram). It was good to get home. The radium infusion was to have been on Wednesay but Dr T has rescheduled it for Friday. Dr T called next morning and said my electrolytes were out of whack and I am dehydrated, which would contribute to me feeling dizzy and faint. I had the option to go in for an infusion or re-hydrate according to his recommendations. I was already taking electrolytes every second day. He suggested l take Hydrolyte daily and double my water intake. After drinking more water and increasing the electrolytes I did feel better on Wednesday and we managed to go out for lunch. I even had a short walk around the shops so it was a good day.
Today we saw Dr Y who was his usual cheery self. I said I was concerned about the rising psa. He said that “sometimes when cancer cells are dying they give off a lot of psa, text book.” Then he said, “don’t give up yet, I will tell you when to give up….never!”
Tomorrow is the third radium infusion….We wait and see how it goes. Must say I have been better since increasing fluids and electrolytes though. Meanwhile the remaining snow is slowly melting away.
Got the news last Wednesday…psa is up to 16.7 from 10.2 a month ago. I saw my oncologist today and he said he is disappointed. Me too, I said. It seems likely that the Zytiga is no longer working. We will persist for another month and if still rising I will have some scans and possibly back to the radiation oncologist. I am still recovering from kidney stones and it has not been the best couple of weeks. I also had my 3 monthly Zoladex injection. The nurse said she hates doing Zoladex injections. It is a huge needle that injects a pellet into my abdomen. What about me, I said!
I am still trying to figure out how I feel about it all. Chemo was mentioned and dismissed. Dr Yun also mentioned a radiation treatment involving infusion of radioactive material into the blood stream (Xofigo?) I did some research and it seems BC Cancer Agency is planning a trial next year and I may qualify. Preliminary tests have shown great promise. A radioactive isotope targets cancer cells and destroys them while leaving healthy cells alone. There is still some hope. Google “Lutetium PSMA” for more information.
Next week I will have another bone scan. At least it will give us a picture of where the bone metastases are.
There are things I would still like to see and do. I need to prioritize because there is no way I can do them all. Most important at this time is to finish 3 tapestries, maybe 4 or 5 if time permits. Physical activity tires me quickly but needlework calms and distracts me.
I need to downsize as well. I plan to edit my many hours of video into something watchable. I want to post some of my life on YouTube, maybe someone will enjoy it. A video review of my life for my funeral is another project. I am fortunate that I have time to prepare. I am not afraid to die. What concerns me is that I will miss out on seeing some exciting things, such as great grandkids. Sometimes I feel as though it is up to me to make people feel ok when the subject of cancer comes up. I am still me and I will be til the end. Having cancer sorts out the real friends and I am blessed that I have Stefanie, family and friends who will stand by me. I thank God for such people.
Today I am preparing for my nuclear pet scan, psma scan also known as a Gallium scan. It involves being injected with a short acting radioactive substance that will show up any tumours very clearly. Last Friday I visited my GP for the earlier bone scan and CT scan results. The news was not good….
He told me I have significant lesions consistent with metastatic prostate cancer, now showing in my left pelvis, left humerus neck, L4 vertebra and my pubic bone. The psma scan will provide a clearer picture.
I have occasional mild pain in my left hip and lower back, but otherwise I feel great. S will be joining me in Australia in a few weeks, I really miss her even though I am seeing many long lost relatives. S and I will have a great time travelling and visiting friends and family, making the most of life!
My psa was 110 at last count. I will have another test in 3 weeks, hoping for a further decrease from an estimated max of 140. Will it ever reach zero? It doesn’t really matter, it is just a concept, and I will retain the name.
Well, my friends and supporters, the time has come to head off to the hospital. We have such a wonderful health care system in Australia, and I am so grateful for that.
I am hoping they will give me the disk as they did last time, I can have a good look and compare to my last results. My oncologist will see us on the 27th to discuss treatment options. There is still hope!! I cling to that!!
More to report later….
Apprehension is what I feel whenever I am heading into the unknown, especially if danger is involved, such as heading out to sea under sail. I know my ship is strong, I built her myself from steel. I know I am strong, I feel well with no symptoms of cancer. I have every reason to feel good, and yet this psa number overshadows my thoughts like a storm cloud.
My last psa test was on Saturday. 5 weeks ago it was almost 50. If it is still doubling it will be almost 100. Now that is a scary thought, but it is only a thought and it’s just a number. However, I still believe that the black salve is working and disrupting the cancer which makes this a false reading. My hope is that the number will level off or even fall as time goes by.
Nonetheless I am happy and blessed in my life. I am grateful for all that I have. God works in wondrous ways so I trust in Him. I will have a result before the weekend.