Up at 6.0am this morning for the slow wet drive into Vancouver in the dark. I don’t think the sun came up at all today and it’s still raining.
We saw Dr T. and what a change! Whenever we have seen him before he was abrupt, clinical and in a hurry to finish. Today he was totally opposite. The results. The bone scan shows more activity as expected. PSA is up to 20.2, not bad considering.
He discussed 2 options, chemo and radium 223. Radium 223 (Xofigo) is 6 injections of a radioactive isotope that finds rapidly dividing bone cells and kills them. It is not a cure but can give an average additional 3 to 4 months of quality life compared to doing nothing. The injections are 4 weeks apart, cost $5000 each and are flown in from Europe. I would be radioactive, especially Dumpy would be, but not a danger to others and I quote “providing it is not swallowed”!!
The other treatment, chemo, he said would have similar effectiveness re survival time, however, he minimised the side effects. He said the cancer is confined to bone, though if it metastasizes to soft tissue (liver or lymph nodes) radium 223 can’t be used. I asked him what would he do if it was him? He said he would have the radium 223 and then he could have chemo later if need be, but not the other way round. Sounds reasonable to me.
He also discussed giving a single shot of radiation to treat a spot on one rib that gets painful at times. Next it was off to x-ray. They took about 15 x-rays of my ribs, hips and legs. I will see Dr Y. next week and hopefully he will show us the scans and x rays.
Meanwhile I am still feeling reasonably well apart from some blood pressure issues, very high, due to Zytiga. I get tired very quickly and I don’t seem to have the energy I had in the summer. I will have to stop Zytiga before starting the radium223, so hopefully the blood pressure will improve. So, another decision to be made re treatment choices. I suspect I will go with the Radium223.
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.
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.