There is no easy way to say it…after 8 months on Zytiga my psa has stopped falling at 9.2 and has now risen to 10.2 in 5 weeks. Does this mean Zytiga has failed? I don’t know to be honest and I must admit it scares me to think what might come next. I have been feeling pain in my ribs and discomfort in my sternum lately despite the Fentanyl. I take Tylenol occasionally when needed, otherwise I still feel well. I am still gaining weight, now 87 kgs. A little more than ideal. I walked nearly a kilometre today with my trusty rollator. I saw Dr Ho this morning and he said that it is possible the psa will continue to fluctuate around the current level and it does not necessarily mean that the treatment has failed. I hope he is right. If the next psa rises significantly I will probably have another bone scan. Chemotherapy doesn’t appeal to me, however I have read that some people have had good results without too many bad side effects, so never say never. Each month when I go for a checkup I see the people receiving chemotherapy sitting in their armchairs and I wonder what it must be like for them. I am reminded that I am not the only victim of cancer and that really I have had it pretty good compared to some people. I have survived 10 years from diagnosis and I have lived more than 70 years. I don’t have to worry about losing my marbles in later life. My next psa is in 3 weeks. Can’t wait to see the score!
This past week has not been one of the greatest. First was the discovery, after 14000 stitches that I had commenced my tapestry at the wrong end. In other words, at least 4 inches below where I should have commenced it if I had bothered to check how much was rolled up on the top dowel. This meant I would run out of canvas as I reached the deck of the boat. Not Happy!!
This is the original photo. I designed and built this boat in the early 70s. “Shiralee” was 30 ft long and displaced 7 tons. She was very easy to sail with her junk sails and long keel.
Anyway, as I near the end of my life (let’s be realistic) I decided I wanted to leave something of myself for anyone that might be interested. This was an achievement I was proud of, so the idea of making a tapestry was born.
And this is how far I got before discovering my error. 14,000 stitches!
I tried to fix it by cutting off the top of the canvas and sewing it on the bottom but it was never going to work. Besides, there were a few things I was not totally happy about…so I decided to start again, however I made some adjustment to size and colour first. The new one will have 29000 stitches as against 34000 previously.
A perfect tapestry, no mistakes. Definitely starting at the right end!
Checked 3 times!!
One week later, well on track. I try to complete at least 200 stitches per day. This week I have completed over 2000 so quite pleased with myself.
Now for the worst news of the week. I finally obtained my medical records from my hospital stay in January. Scans show that my cancer has metastasised further to my ribs and sternum and also further into my femur.
My psa continues to fall. I had a blood test today, results soon but I am expecting somewhere in the 40-50 range. It seems to halve every month. Naturally my beautiful wife is upset as are my close relatives, but what can you do? Life goes on. I feel well apart from some occasional mild discomfort in one rib. I am active and enjoying life. I made it to 71 and expect to see 72, so I have very little to complain about.
Why would I celebrate a psa of 91.6? Because it is lower than the last psa of 160, that’s why!! The Zytiga and prednisone continue to work so S and I are very pleased with progress. The cementoplasty in February has restored strength and stability to my left hip though I continue to use my stick and my faithful walker when I am out and about. Cancer wise I have no symptoms that I am aware of. There are no ugly swollen bits of bone and to look at me you would think I am perfectly well…and I feel well, better than I have in a long time.
The photo above is of a cross stitch that I began in March as both therapy and pastime. It will be a picture of a boat that I designed and built back in the early 70s. I hope someone will treasure it when I am gone. There is love for family in every stitch.
WARNING!! THE NEXT PARAGRAPH CONTAINS GRAPHICALLY GROSS SCENES!!
My life at this time is great. There is only one drawback apart from the inevitable, which I plan to postpone for as long as possible. Ostomy blues. The polite word for it is “output”. Mostly my output is manageable. You may be aware of the expression “sticks like shit to a blanket!” Well, I am here to tell you the “output” sticks to everything! Now I always wear protective gloves when draining my pouches, and mostly I manage to avoid trouble. Last week we were out shopping when I felt a sudden and voluminous outpouring of output. I quickly went to a disability washroom only to be beaten to the door by a staff member. After a considerable wait, S knocked on the door and the staff member came out. I think she was taking a break. Anyway, I knelt before the throne as I do to empty the pouch. The next step is to sit on the throne while I clean and reseal the pouch. However, as I made the transition from kneeling to sitting, there was a sudden rush of liquid you know what and a mad panic to minimise the damage. You can guess the rest! I tell you these things because no one talks about it.
Should I tell you what happened this week? It was even worse. Every 5-6 days I change the adhesive flange that supports the ostomy pouch. While I am unencumbered, feeling free, just me and my stoma, I like to have a bath and then allow my skin to air and have a break from the sticky plaster that supports the flange. This usually does not cause a problem, and on the rare occasions there is output, I can catch it in a tissue and dispose of it in a plastic bag kept nearby for the purpose. This week however routine turned to disaster. Diarrhea Disaster! After about an hour of relaxing rest while watching TV, airing my belly, suddenly there was an outpouring of output like you would not believe. Totally without warning. There were screams of horror, more tissues and plastic bags required quickly. I got off the bed while S removed the sheet and headed for the bathroom where I sat for the next half hour in my birthday suit while the thing in my belly got rid of what was left.
Well, now you have some idea of what it is like to live with a colostomy bag. I apologise if you are having dinner… but at least there is still cause for celebration!!
My PSA about 6 weeks ago was 180. A month before that it was 140, a steady rise, not totally unexpected given that my only treatment was Zoladex to reduce testosterone and Xgeva to strengthen bones. I knew that the Zoladex had long ceased to be effective in reducing psa, but the oncologist thought it was worthwhile continuing. He said I was “too healthy” to have chemotherapy at this stage. Not that I wanted to have it anyway. He said unless I have chemo at some point he was not allowed to prescribe other medications or treatments. First, the chemo must fail, then we can try something else. What a system!! Bet Big Pharma dreamed that one up!!
Last week I received my latest PSA. 392!!! WTF!!! More than doubled in 6 weeks. I was in shock. Psychologically I felt a distinct increase in pain in my hip that night. I had been prescribed morphine rather than the pain patches I had been wearing for the last month. “20mg tablets, take 1-2 4 times daily when needed” I could only get 10mg tablets. 240 of them. Someone said if I took enough I could end all pain…forever!! Just go to sleep…well, I’m not ready for that one yet.
Being wary, I took 5mg, half a tablet- 1/4 of the prescribed dose….No ill effects. Good. Four hours later I took 10mg. Felt a little groggy but less pain….OK….Four hours after that I took a second 10mg tablet and tried to sleep. Thoughts of death and dying were racing through my head. The number 392 kept nagging me awake. What does it really mean? I feel OK, I have not lost weight…the pain is in my head, surely. After an hour or so I took an Ativan to help me sleep. I am kind of addicted to Ativan.. just 1 mg to help get to sleep.
At 3.00am I woke having to pee. I felt a bit dizzy, a bit sweaty. I made it to the bathroom. On my way back to bed it hit me, I collapsed onto the bed feeling extremely dizzy and nauseous, I began to sweat profusely and I could feel a sharp pain in my chest. “I am going to die” occurred to me. S woke up, took one look at me and said “you are having a reaction to your medications”. Lucky she is a retired RN and after observing me, she said “this will pass, no need to call 911”. I did recover within a short time. Later Dr Google informed me that you must never take Ativan with Morphine. It can be deadly!!
So, here I am in Canada, away from my doctors in Australia. I have applied for Permanent Residency and also for medical expenses assistance. My travel insurance won’t touch anything to do with cancer, so it is now a waiting game. I don’t think there is much that can be done anyway, so I will just keep going as long as I can. I have not needed any pain meds for the last two days. I wonder if the Buprenorphine patches could have caused an increase in psa?
I feel good within myself, I have no lumps or indications that the metastases in my bones have grown larger, though I am sure that they have. The only thing that has changed is that number. I am still having Zoladex (photo above) and Xgeva and taking each day as it comes.
I know that there are many people who read my blog and follow my progress. I am grateful for your good wishes and prayers and I love to read your comments. Please, if you pray, pray that I will continue to face this thing courageously and with a positive attitude. I hope that my story is of help to someone else who might be in similar circumstances, and that if you are, you will draw strength from knowing you are not alone.
Another psa test has been assessed and this time the news was not too bad. Holding steady at 140. The same as it was 5 weeks ago. The question is, why?
July 19 was sinus surgery day. It went well apparently, I woke from the anaesthetic feeling like my face had been kicked by a horse, but once the pain killers took effect I felt pretty good. S was there to comfort me and it was so good to see her smiling face. I did not sleep that night, blood pouring from my nose, over my pillow and sheets. Around 3 am I was feeling great. I finished a book I was reading and had a good breakfast. I could not believe how good I felt. I could breathe through my nose again.
It did not last however, whatever they gave me wore off the next night at home. The pain and discomfort set in and the gunk from my sinuses began to flow. Next day I was bleeding so we called the ambulance just in case. It did stop eventually though. Sneezing was extremely interesting, resulting in technicolor artwork that would do Pro Hart (google him) proud, “study in red and black”.
I suspect the level psa could be connected somehow to the large doses of prednisone I was taking before and after surgery. There has been almost no hip or back pain since then either and I am walking well, without a limp. I have had a few dizzy turns however when out doing the shopping, but that is improving.
More than two weeks of nasal rinses later, I am still getting gunk out of my sinuses. My breath smells terribly, but at least my sense of smell has returned and food tastes like it should. I am getting stronger every day in preparation for the possibility of chemo in just a few short weeks.
S and I are missing our home in Richmond BC and hoping to return soon well before the dreaded Canadian winter sets in.
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….
After receiving my latest psa, we made the decision that I should return to Oz as soon as possible. We went to Vancouver Airport to arrange a flight. The young lady at the Delta check in, said she could get me on a flight May 1. There would be a $300.00 penalty payment. We asked if it could be waived. She said she had already waived a good part of it. Then my hero, S, stepped in and said, “this is a medical emergency, my partner has cancer and needs urgent treatment.” The young lady said she would see what she could do. When she came back she said her supervisor had waived the whole fee, and also they would arrange for me to have a window seat (which I wanted) and also a vacant seat beside me on both flights! Wow! What great service Delta. And all on just a few days notice….
On the flight day, I went through US customs at Vancouver airport. There were no problems, it was a very smooth process. I have a 90 day visa for the US. At LAX there would be no Customs to worry about and no bags to transfer, easy!
We took off over the water, and I got some glimpses of Vancouver Island. After that there was lots of cloud until about halfway to LA. We passed over Lake Tahoe and I got some video. I got some great shots. I could see a huge ski resort at Mount Rose just North of Lake Tahoe. The mountains were amazing, then it was miles and miles of farms around Fresno. The sun was out coming up to LA. We swung out over the sea and then circled back over LA before landing. It was a good flight with my empty seat beside me. The guy in the other seat slept all the way.
As I left the plane, I saw a man with a wheelchair, holding a sign with my name on it. So I got a wheelchair ride to the departure lounge. It was not far like last time, but I was grateful not to have to walk. My hip hasn’t been too bad lately but I don’t want to aggravate it. No customs, no baggage to worry about. I had a nice dinner and the 5 hours went quickly thanks to scintillating conversation with my Darling S on Facebook Messenger.
When I boarded the big 777 for the long crossing of the Pacific, I discovered I had 3 seats all to myself and mine was the only bag in my overhead locker. After take off a woman asked if she could sit in my aisle seat. They had put her in the middle with two fatties. She was going to Perth, so of course I was fine with that. The rest of the plane was full. How good was that. The lady who arranged my flight deserves a medal! All credit to S too, she was most persuasive and I am sure she arranged the wheelchair.
I watched 3 movies en route. Lion was good, but not exactly bedtime stuff. At the end they showed the real people and you saw his adopting parents meeting his mother. Bit of a tear jerker that one. That started me missing S again, so I had a bit of a teary moment!
After a while I watched Manchester by the Sea. I didn’t really like it. It was about dysfunctional people and I kept waiting for the good bit, but I must have missed it!
Later I watched The Meddler. Susan Sarandon. I loved it. Had me laughing out loud at times. A great movie, I can recommend it.
Later in the flight we had some turbulence and I opened my blind and had a look. There was the Southern Cross, just above the wing. I looked down and there were all the lights of Fiji. What a beautiful sight. You could see the different islands like jewels of light in the black.
The sun rose an hour before Sydney. There was very thick cloud. It was a bit better when we arrived, we did a big circle over Sydney before landing and I was able to shoot some good video despite the partial overcast. The captain gave a really good talk about Sydney as we circled. It was a good flight. The hardest thing was trying to get comfortable. My new neck pillow was a big help. When I left the plane there was no wheelchair for me. Apparently the guy was late getting there I learned later. There was a huge crowd of passengers all trying to figure out the passport check machines. I was getting pretty tired by this so went straight to Customs. I had declared that I had “restricted drugs or medications”. I expected to be searched, but the Officer just took one look at me and said “medications?”. I said yes, he said go to aisle 6. I could see people lined up in rows to go through the x ray machines, then I discovered aisle 6 went straight to the exit. My cousin was waiting to take me to her place, where I had breakfast and crashed for the day. I had been awake for 60 hours!
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.
Here I go again with the black salve, this time in capsules form. I thought it would be black but it’s not, as you can see. I have read so many testimonials about black salve and other natural therapies, it is hard to accept that they are all fake. So, undaunted, I will continue in my quest for a cure, or at least a slowing down of the process.
First, to those who think I am wasting my time and money. These capsules do not cost anywhere near as much as the drugs from pharmaceutical companies. Also they do not do as much damage as chemotherapy, hormone therapy, surgery or radiation, all of which have failed in some cases despite the cost. In fact, people often end up worse off.
My new regime starts today. I take circumin with black pepper twice per day and blood root capsules 3 times per day with food, as per the manufacturers directions. I will continue to monitor my psa on a regular basis. My last psa in March was nearly 50 indicating a doubling time of 5 weeks. Now that is scary!
Any reasonable person would conclude that my experiment with black salve didn’t work, in fact it may have made things worse! Unreasonably, I prefer to believe that it has stirred up the cancer cells, causing them to excrete psa in their agony of dying. I visualise those little buggers writhing in pain, doubled over as psa oozes out of their contorted bodies! The dead bodies mopped up by my strengthened immune system and leaving my body through the usual channels.
Well that is what I choose to believe. My next psa test is later next week. Until then I hold on to my faith. Cancer does not have me. My spirit is well!
Thank you to all who consciously or unconsciously are praying for me, and a big thanks to my partner S who is my faith when mine is weak.
The brief Holiday is over and it is back to normal life, if you can call it that. S and I had a great game of Mini Golf, she beat me 56 to 60, par 46, well deserved! That night I received an email from my Oncologist in Newcastle NSW. He suggests that I see him in 3-4 months from now. I was so relieved to receive this news as I do not wish to leave my beloved S any sooner than I have to. My flight is booked for early July….
Unfortunately I will not make the required 12 months living in Canada before I can apply for permanent residency, so I am not sure what will happen there. I don’t know how long I will have to stay in Australia, but I plan to return as soon as I can. S told me that if I have to stay longer she will come out and stay with me.
As for treatment, who knows? I guess it will be the usual run of tests and jabs, try this, try that and see what happens. I wonder sometimes, are we treating the psa or are we treating the disease? I feel fine, I have no symptoms of cancer. If you saw me you would say he is pretty fit for a 70 year old!
Tonight I give my maiden speech at Toastmasters. I really enjoy doing this, it helps take my mind off other things. I am a little apprehensive, but well prepared. Will let you know how it goes…..