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!
It’s the end of yet another month. This month of August 2018 is special in a couple of ways. Firstly it marks 10 years of survival from my initial diagnosis when my psa was 12. Secondly my latest psa has finally dipped below 10, coming in at 9.2, so I am pretty pleased with that. Full credit for the improvement in my psa must go to what I call The Awesome Four. Four little (not so little) Zytiga tablets ($50 each if I had to pay for them!) that I take every morning followed by prednisone.
I feel good. I am fit and strong, walking well (with the aid of my trusty walker). The worst side effect is that my skin is becoming very thin and I bruise and bleed easily. However, that is a small price to pay for the resulting psa drop. What does lower psa actually mean though? It means that the cancer tumours will be less active and less likely to spread. Unfortunately it does not mean there will be less cancer, so I still need to be careful to avoid falls or heavy loads on my legs.
The cross stitch is progressing well. I am quite pleased with it and only a few thousand stitches to go and then the detailing and rigging to finish. I need to consider how I am going to frame the finished work and I have a few ideas. S has a love for the Waratah, an Australian native flower of striking beauty (just like her!) and that will be the subject of my next project.
Meanwhile life goes on. Mr Dumpy (colostomy bag) has been up to his usual tricks. I really need to get my diet under control. Multigrain bread and carbonated drinks cause havoc. Today, while out shopping, I suddenly realised that Mr Dumpy had filled almost to bursting point with gas. I was driving and so could not relieve the pressure, an operation that requires me to get out of the car. (It stinks!) I told S, “One more fart and it’s all over!” However, it held out until we got home.
Sadly, my Mum passed away a few weeks ago. She was 95 and had lived a full and enjoyable life. She said she was ready to go and after a short illness she left this world in her sleep. Unfortunately I was not able to travel to Australia to see her or attend her funeral. A generous relative held her phone up for the entire service, allowing us to watch live. The wonders of modern technology!!
So this month has been a mixture of good and not so good. Life goes on and so do we.
Thursday 2 August latest psa reading is 14.7. 4 weeks ago it was 19.7 and up until now it has consistently halved each month, so this reading, around 75% is a little disappointing. The good news though is that it is less than last time so I will take that gratefully.
Meanwhile I am continuing with the Zytiga and Prednisone with no apparent side effects apart from growing pert little breasts. My testosterone is virtually undetectable at less than 0.1. The good thing about that is that it starves the tumours and slows down any growth. The bad is that it takes away all sexual urges, then again maybe that is not so bad as nothing works down there anyway! My rib still aches at times and I take Tylenol in addition to the Fentanyl patches every 3 days. I notice the rib pain more on the third day.
The ostomy is still troublesome at times. It is always there except for a few hours every 4-6 days when I remove it to replace it. I like to just relax and give the skin some air for a while. I know it is not polite conversation to talk about one’s bowel habits, but when it is right in front of you it is hard to ignore. Most times when the bag is removed I can collect any “output” in a tissue and then put it in a plastic bag. Last time, this was working quite well until suddenly there was a lot of gas, causing S to leave the room and then an increase in “output” causing me to hastily fit a new skin barrier and pouch. Luckily I got it on in time and didn’t make a mess, however the new bag quickly filled up. Should have waited, but that is ostomy care. Full of surprises!
However, life is good and I am glad to be alive. I have been following the Golden Globe Race and have found a program that will allow me to virtually enter the race. Haven’t tried it yet so that is a subject for another blog at a later date.
It is two months since I started over after my disastrous oversight. 16,000 stitches down and only 12,000 to go plus a bit of detail work. I am still enjoying the task and life is good!
Way back in the early 70s I built a boat in the front yard of my house. I have been mad about boats for as long as I can remember, way back to when I was a toddler playing in the gutter near my home. As I grew older I was inspired by the sailing qualities of Chinese Junks and I had read of Western style vessels fitted with junk rig. There were no plans available so I decided to design and build my own. As a Marine Engineer, I had studied Naval Architecture and I had picked up quite a bit of knowledge of boat building. My first real boat was a 12 foot plywood dinghy with junk rig. It sailed well and was a lot of fun. ” Shiralee”, an old Australian word referring to a swagman’s bed roll, and meaning both a home and a burden, was to be 30 feet long and built from Ferrocement. A lot of “Ferro” boats were being built around the 70s and is to my mind an excellent way to build a strong, long lasting boat. “Shiralee” is still active in Queensland’s Moreton Bay area. However, building this way is time consuming, with well over 10,000 wire ties all done by hand. There is also over half a mile of 1/4 inch steel rod to mould into the shape of a boat.
First, I built a scale model to check that the balance was correct and that the boat would be stable and also sail well. The model was a great success. It demonstrated that the boat would sail straight without constant attention to steering, in fact it would sail itself, adjusting to wind changes automatically. It was also stable and would right itself after a capsize. It was time to start building for real.
The boat was designed so that the hull up to deck level could be built in my garage. This was where much of the tedious bending and welding of steel rods could be completed out of the weather.
The next step was to move the frame to the front yard so I could finish applying 5 layers of wire mesh. Surprisingly, when this was completed the deck was strong enough to walk on. The cement only needs to keep out water, however it adds much to strength. The mortar used was carefully measured and mixed, it becomes a strong flexible structure after curing for around a month, being kept constantly wet. I hired a team of professional plasterers for an expert job. After 6 hours they were done. Using the knowledge I picked up from the plasterers, I completed the deck and cabin myself.
My children loved being on the deck! I also made the sails, masts and most of the fittings!
Came launching day. 7 tons was almost too much for the crane! We hired a low loader semi trailer for the trip to the water. The local TV station even put us on the news that night!
And, as predicted, “Shiralee” sailed very well. She was easily handled by one person and easily kept up with more conventional boats on most courses. She handled strong winds well and was a joy to sail. I was not able to predict the economic downturn that was about to hit. I was self-employed and soon had to sell my house. We lived on “Shiralee” for a few years until the children became too big and needed more room. That will be the subject of a future blog. How long did it take? Three years! Would I do it again? In a heartbeat!!
In May Stefanie and I enjoyed a cruise to Alaska accompanied by my sister, Rae and her husband, Ray. Two rays of sunshine! Is it really necessary to say it was wonderful! It was great! The weather was kind to us with calm seas, not too much overcast and some sunny days.
Heading North in “Island Princess” there was plenty to look at as we were often close to shore. Our itinerary included Juneau, Skagway Glacier Bay and Ketchikan.
Skagway was interesting, we should have taken the train ride with Rae and Ray, however we enjoyed visiting the town and the gold mining museum. I was particularly intrigued by the old steam snow plow on display near the town. It can be seen in action on YouTube, search “Skagway Snow plow”. Spectacular.
The highlight of the trip was undoubtedly a visit to Glacier Bay. It was raining and cloudy as we approached the Margerie Glacier. The guide said it was good that it was overcast because the colors of the glacier would be more intense. As we drew nearer the sun came out. The guide said we are very lucky to see it in sunshine!! We drifted for a long time, just off the face of the glacier. We could hear the thunderous cracking of ice deep within the glacier and every now and then pieces would break off and splash into the sea. It was really quite awesome. We spotted a sea otter playing with a small chunk of floating ice as we departed. Too far off for a photo though.
Of course, a great part of cruising centres around life on board. We dressed up for a formal night.
The last stop was Ketchikan where we went ashore and explored the shops. Observant readers will no doubt notice the effects of hormone treatment on my chest!! As well as my ostomy bag!
Returning to Vancouver, as we left the ship and proceeded through Customs, we were surprised to be pulled aside and taken away for questioning. We were detained for well over an hour, felt like two. I had applied for an extension of my visa. I had been waiting 3 months for approval that normally comes through in 35 days. Apparently I was not supposed to leave Canada while approval was pending. No one told me that! In the end it was all sorted out and I was handed my official visa extension giving me another 6 months from that date, so it was a good outcome, if a little scary. When we needed to use the bathroom we were escorted by an officer to make sure we didn’t do a runner, I guess. Just imagine me trying to escape with my walker!
All in all it was a great experience and created good memories for both of us. I was slowed down by my condition, however I am very happy to have done the things that I did do. It was cold and I think our next trip will be to warmer climates. Having said that, Alaska would not be the same if it was not cold!
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!!
It all depends on your point of view. A year ago a PSA of 160 had me booking a flight to Australia, thinking it is all downhill from here. This week a PSA of 160 is a cause for celebration. Not too many prostate cancer survivors would agree with that, however it is true in my case.
You see, my last PSA was 1800 and the one before that was over 2100. I am pleased to report that Zytiga with Prednisone is working well and I am looking forward to even lower numbers in the future. Not only that, but I feel great!! Maybe it’s the Predisone, who knows. My appetite has returned, I am walking really well with no hip pain. Even though I feel stable I still use a stick or my walker. I don’t have the same endurance that I had 2 years ago, but I am happy with what I do have. The cementoplasty has worked really well. Whether I will have the same procedure for my spine remains to be seen, so far so good! At my last weigh in I was 77kg, up from the 69kg skeleton that came home from hospital. Friends are amazed at how well I look.
Ostomy blues- It is good to be alive, but this bag on my belly is really no fun. S is really pleased that now I can empty the thing by myself. I don’t even smell it any more!! It is a very interesting exercise, getting close up with your recent dinner. Tomorrow S and I have an appointment with an Ostomy Nurse and we will discuss what works and what doesn’t. The biggest problem involves wearing clothes. The stoma (bit of bowel sticking out of my belly) is right on my belt line, so I have to wear my trousers a couple of inches lower than usual. OK, but I am not a teenager. The colostomy bag hangs over my belt. I wear long shirts and sweaters but it still manages to peep out at anyone who might be looking. Very embarrassing. I can’t wear shirts tucked in, however I bought a guard that is supposed to protect the stoma so a belt can be tightened over it. It works but not very well. I will have to invent something! S came up with the idea of folding the bag over and taping it up. Works OK until the bag starts to get full which happens any time of the day or night, without warning. That means I have to take a bag of spares, rubber gloves and cleaning wipes with me if we go out for any length of time. How would you feel if you could not control your farts? I fart through my belly, not the normal raspberry, but a strange strangled gurgling noise that causes much amusement and curiosity. The literature tells me that ostomy bags (pouches) are scarcely visible beneath clothing…wrong! As soon as it gets any “output”, a nice word for shit, it pokes out as though I am smuggling wildlife. (Hope I don’t get frisked at Customs!)
However, the surgery doubtless saved my life so I am grateful for that and “Dumpy” and I will just have to come to terms with each other. Soon S and I will be heading off on an Alaska cruise with my sister and brother in law. A well earned reward for both S and myself. We are planning a road trip in June when we hope to drive down the Oregon Coast, maybe visit San Francisco. (Sailing under the Golden Gate bridge has been on my bucket list for many years) No one knows how much time they have left, so enjoy life to the full if you can. Thanks for reading my blog, and a special thanks to my good friends who encourage me with their comments. I do appreciate you even though we have never met, and you are always in my thoughts and prayers.
Yesterday I walked 220 steps. That doesn’t sound like much, does it? Even less when I tell you I used my walker. That is the longest walk I have taken this year! I was tired afterwards but it felt great to do that.
My new medication, Zytiga with Prednisone is working well so far. After 15 days psa dropped to 1800. After 3 weeks I have no adverse side effects, just occasional hot flushes. I am also using Fentanyl patches for pain control. It is very effective with none of the side effects of morphine.
Following the cementoplasty to my left hip, my leg feels much more stable. I can walk short distances unaided but with a limp. There is no limp using the walker.
My sister Rae and brother in law Ray have come all the way from Australia and we are enjoying their company. They have rented an apartment in Richmond. We are looking forward to a 7 day Alaska cruise with them in May. Having a disability got us a really good deal, so it’s not all bad!
Finally, a word on ostomy pouches. It is a smelly, messy process that still requires both of us to perform. Some days it fills up 3 times. Some days not at all. Twice we have needed to get home quickly to avoid a disaster! I expect I will soon be ok to empty the pouch on my own. I have to go down on my knees before the throne and this involves quite a bit of preparation. Changing base plates is a different story. Stefanie has that job as I can’t see to make an accurate fit around the bit of bowel that sticks out of my belly. Besides I have to be on the lookout for unexpected eruptions which fortunately are rare.
The journey over the last few months has not been fun. We all hold onto life by a thread, so enjoy what you have while you still have it! Thanks everyone for your support, prayers and good wishes. They make a difference!