The (provisional) new normal

First the news — we saw Dr P this morning, and the PSA remains undetectable. (This has been the score the last few times (with minor variations in 100ths of a per cent). Today’s consult was followed by a Zolodex appointment; the latter was scheduled half an hour afterwards. Dr P was running a tad behind, so after the consult I legged it off to the oncology unit at Epworth Box Hill for the implant. That was delivered uneventfully. (I had had a little bleeding from the previous one, which was unusual. There were no problems today, though. The implant is only about the size of a grain of rice, so it is not a big thing to put in.)  

After that we had a coffee — takeaway of course — drunk back in the car. Then we headed off to Mitcham, where my beloved wanted to check the size of a pair of shoes she had bought on Thursday. It was good that she did, as she ended up getting a half size bigger than those she had been sold previously. Finalising the transaction took some doing — there were complications. She had purchased two pairs on Thursday, one of which she took with her, the second to be mailed to us later. Much checking was required to distinguish the pair being returned from the pair being sent! (We will have to return this pair to the store for a refund — whenever they arrive.) We had gotten a discount on the price of the pair she had bought on Thursday, and this was duly applied also to the pair bought this morning. Of course the sales assistant we had today was not the one who had done the transaction last Thursday. Etcetera. Anyway, after trying on several further pairs, the slightly-too-small ones were “swapped out” (as people like to say) for the correctly sized pair. We thankfully headed for home after our voyage around the ‘burbs of outer eastern Melbourne. When large areas of the globe were still undiscovered, early cartographers used to write in the blank spaces — here there be dragons!  

Over the weekend I caught up with an old friend, with whom I had shared another takeaway coffee and a wander around the local park. He is working at a university library. All Australian unis depend on foreign students to remain solvent; with COVID19, a smaller number of these folk is expected to enrol in 2021. I think many people in the university sector are waiting to see what their jobs will look like when this happens. My friend is no exception. We swapped health updates as well while working our way around Wattle Park. 

A lot of people seem to be in this very provisional space at present. Whether we go up a ladder or down a snake seems to be one set of numbers away. The best to be hoped for is to keep plodding along, and staying off the radar. Is it a life stage thing? Was life always like this, or has it become more so recently?  

I wore a pink shirt this morning to give myself a bit of a lift, and, I hoped, to cast a healthy glow. I am developing a shirt colour theory of history. Garibaldi’s volunteers wore red shirts (the “Camicie Rosse“). So did the illegally-employed minions working for Victorian Labor Government MPs. These minions were paid out of public funds despite doing electorate work — quite naughty of their employers. (See the ABC News story for those who, like me, had forgotten about this rather sordid tale.) The fascists wore black shirts, Hitler’s Storm Troopers wore brown ones.  Conservative pollies — male ones, at least — seem to favour white shirts. Incidentally — hold the presses — I realise I have hardly worn my white shirts since leaving the paid workforce. So colour does stand for something. But what? 

Back to the OK Corral

I just heard from Phillip Parente — all good. I am to see him next on 20 July. On that date I am also scheduled to have my next Zolodex implant, with the usual provisos. On 20 July I will be seeing Phillip face to face; the appointment in the Epworth day oncology unit which is scheduled 30 minutes later. One day they some clever person will work out a way to deliver drug implants via the internet. Until then I have to schlep over there in person for one of the super oncology nurses to do the business.

I have had three Zoom meetings this week, two for the exercise class, one for German. The latter is something I have just resumed doing after a break of several years. However much I doubted that I would ever get back to Austria or Germany, I kept all my books, dictionaries, and the other language learning clutter. Without any concrete purpose to turn over the language engine again, though, things stayed in a state of equilibrium. One day a few weeks ago, though, I started going a bit stir crazy with the isolation, and realised that I needed a project. I had had a fair bit of Zoom experience by then, as well. This led to one of those rare lightbulb moments in which I wondered if I could use that platform for language learning. Not only could I do that: my former language school wasn’t doing classes any other way. So I made contact, explained my purpose, and had my first lesson with Jörg. Alles gut! 

I have fond memories of making my way into Melbourne when I was doing German face to face in 2015 and 2016. I would drive to Riversdale station and catch the train to Parliament. From there I would cross Spring Street and walk through East Melbourne, past the lowering bluestone bulk of St Patrick’s Cathedral. The language school was in an old terrace house on Victoria Street. I began in a small class, which would make its way up the narrow, creaky stairs. When I got back from the trip, the class was half way through its new term. The only way I could try to catch up was by seeing a teacher one on one. When I got the cancer diagnosis, language learning seemed like the least important thing to do.  

I’m glad I didn’t let it go, though. German now seems like a vast jigsaw puzzle, complex, but less impenetrable than it did the first time. With my dictionaries, web sites, index cards, and multi-coloured pens (handy for learning genders), I feel better prepared for this second campaign. The break has given me time to ponder the intricacies of this knotty language, and a couple of countries to relate it to. For the first time in my life, I am learning grammar. (It would have been get this under my belt at school, but besser spät als nie, as punctual Germans would say.) 

Scoreless draw

My beloved and I went along for my final appointment with Dr Parente for the year. All was as if had been the other times — PSA undetectable — everything good. Of course, this is something we never get tired of hearing! Herself and I had a celebratory coffee in Hawthorn before went to my exercise class.

The week before each appointment, I have a blood test, leaving enough time for the lab work to be done and delivered to Dr P. Around then, I start getting testing anxiety; I am more irritable, although I try not to be, and my sleep is worse. On the morning of the appointment, I feel quite neutral — there is almost a relief that it is here.  On the morning of the appointment, we drive to Box Hill, hoping to get a spot in the practice’s car park. This is quite contested. To keep non-patients out, the practice has had to hand out passes each day to display on the top of their vehicle’s dashboard. If there is a spot, my beloved parks the car while I nick in to grab a pass. I bring this back to her and retrieve my backpack. Necessary things contained therein are my notebook, and a book to read. If I don’t have the notebook, I just don’t remember anything much of what is said in the appointment. I just sit and read my book until my name is called. 

We have found morning appointments are best; I am usually a bit more alert, and there is less chance of the good doctor running behind. Dr P goes through the results from the blood test. This is usually straightforward; everything is over in about five minutes.  It is strange how, after I get this news, I feel a bit scatty and distracted. I never expect the results to be the same as they were last time, even when they have been good all year, or remember how I feel from one time to the next. We have gone through this cycle eight times this year. In saying this, I am very conscious that everything is the best that it can be.

Every other time I see Dr P, all being well, I have another Zolodex. (This is the estrogen treatment that is keeping the cancer quiet. It is delivered in the form of an implant about the size of a grain of rice.) I just walk up the street from the practice to the Epworth Box Hill oncology ward. One of the nurses there checks the dose, and what side it went in on last time. Then they swab the other side of my tummy, and shove it in. This is one of the situations where being a bit rounded is actually quite a good thing! One of the nurses said that they have to hunt around on really lean patients to find enough fat into which to put the implant. Even with my moderate spare tyre, the injection still leaves a fair size bruise.

Dr P told me to keep up the exercise, which I intend to do. I am about half way through the three months of exercise classes I am doing for the university study; three classes a week for the next six weeks, with a break for Christmas. The classes are all supervised by PhD students in exercise physiology. They are lovely young folk, radiating fitness and endorphins, who implacably raise the bar on us old roosters. The aerobic session I do first has gotten longer, and now features high intensity interval training. (This is where you go flat out for a minute, then ease back to the original speed. I do this three or four times, then have a cool-down.) In the resistance training part, the weights have gotten heavier, and the number of sets has gone from two to three. I am feeling better for it all, and even putting on some muscle.  On Sunday, two days after my last class, I felt restless, and found it hard to concentrate. I think I am getting hooked on this exercise caper!

I have been pondering what to do around the end of January, after the study finishes.  I don’t think I will do three sessions a week on my own dime; two, however, is quite a possibility. Meanwhile, Christmas looms into view again. I had the end-of-year party for the Museum last week. This week there is the party for the physio practice I was going to before starting the university program. The same day there is a coffee morning for former RMIT people; everyone kindly rearranged this from its usual day to accommodate my exercise class. This week we will also be getting a visit from an air-conditioning installer, fortunately the day before a heatwave. We will have gone from fifteen to thirty-eight in the same week, an impressive range even for Melbourne. 

New normal

Well, we saw Dr Parente this morning, and the news continues to be good. Everything is looking fine on the blood test; the PSA continues to be undetectable. Dr P was saying that everything was totally normal, then corrected himself. An undetectable PSA score is not normal. However, I’m happy to be an outlier — some might say, a freak — in this context!

So, how high should PSA be? According to Medline Plus, a score of 2.5 is considered normal for males 50 or younger. This will rise gradually from that age onwards. But in the context of prostate cancer, it is not so much the quantum of the score as its trajectory that counts. If your PSA takes a sudden jump, that is what gets everyone suddenly very concerned. As the Medline article says, prostate cancer can’t be diagnosed from a PSA test alone — that needs a biopsy. The test just raises a red flag.

The reliability or otherwise of the PSA test for mass screening test is extremely controversial, as it should be. But for individuals, there doesn’t seem to be another test that is as good. My impression is that males are under-tested, insofar as we tend to be at the GP’s office less often than females. So when a man in his fifties or older finally gets around to going to the doctor, the GP may order PSA to be tested as a just-in-case.

My message to male readers? It ain’t rocket science — get it checked out! Early detection still gives the best prospects. Men may feel reluctant to open that door; I certainly did. But just because you need to pee more often, it could just be benign prostatic hyperplasia. Treatments for this condition cover a spectrum of “let’s just keep an eye on it” to something more elaborate. That is a judgement that obviously needs to be made by a specialist. On the other hand, and not wanting to be alarmist, but you could have no symptoms and have something going on that needs to be nipped in the bud. (This was my experience.)

If you see a specialist, and want to get some more information before you commit yourself, get along to a prostate cancer survivor’s group, or join one of the discussion lists. You don’t need to have had an operation to join a group or a web site. But if you want to talk to those who have had surgery, radiation, chemo, or whatever else, this is a great opportunity. The Prostate Cancer Foundation of Australia is a good place to start.

Nothing to see here …

We saw Dr Parente yesterday morning. The PSA is still undetectable, and I remain in remission. After receiving this good news, we went to the oncology unit, where I had another Zolodex implanted. (You will remember that this is the hormone treatment — androgen deprivation — that is aiming to starve the cancers of what they feed on.) The implants are about the size of a grain of rice and last about 3 months. They just go in in the abdominal fat, of which there is still plenty, even after the gastro! There is very little discomfort. I booked in the next appointments with Dr P & the oncology unit, for the next implant.

My beloved is going to Paris in early April for a few days. She will be representing her work at an international transport meeting. We thought of me going as well, and tacking a cruise or other expedition onto the end of her work commitments. However, there is bugger-all happening in that line at that time of year (too cold, I suspect). So I am going to hold the fort. Of course this depends on nothing going awry in the meantime, but (touch wood) all seems to be quite stable. I have been going to an exercise class for oncology patients run by Lauren, the exercise physio, and this is pretty good! I will be going back to the gym soon as well (I stopped for a few weeks with the gastro).

My lovely old Luxman pre-amp has spat the dummy again and is only working on one channel. This is a real bore as I have to disconnect everything, pull it out, and run it over to the valve amp guru in Glen Waverley. He will have it for however long he needs to ponder its mysteries — could be weeks. (His workshop is like an Aladdin’s cave of amplifiers, many much more expensive than mine. So he knows whereof he speaks.) This is not my first pilgrimage there, however, and to be honest I am a bit over the vintage gear. Maybe I should sell it on Gumtree and get a nice, soulless, reliable, solid state integrated amp!

Sir’s undetectable

There was a line of wigs or hairpieces widely advertised in the media of the 1960s or 70s as “Sir’s Undetectable”. I am hoping that someone of my vintage, or thereabouts, can confirm (or otherwise) that I am spelling “Sir’s” correctly with the apostrophe after the “r”. These products were legendary in our family as “Sir’s detectable“!

Dr Google can only turn up a Yellow Pages advertisement for “Sir’s For Men Wigs & Hairpieces” in Baulkham Hills, Sydney, which assures us that this is “A Name You Have Relied On For Three Generations”. My curiosity being aroused, I turned to Trove, where I performed the following search . This only found results from advertising in the Canberra Times from 1980 onwards. These advertisers of this era were unsurprisingly unsure about whether to spell their product “Sir’s”, “Sirs” or even “Sirs’ “, resorting to all three spellings in the 19 ads retrieved. That apostrophe was indeed a pesky piece of punctuation! Is there a grammarian in the house?

There is indeed method behind all this tonsorial nostalgia. My last PSA result repeated the previous one, I think it was, as 0.01. Apparently this amounts to  being undetectable. (I had been hoping for the “bagel score” of 0.0, but I guess the .01 part is a courtesy amount, rather as people refer to retired military or politicians by a courtesy title.) Anyway, I remain happily in remission. The last chemotherapy session went well, as all the previous ones had. Only one to go, on Boxing Day! (I will be seeing the good Dr P on Christmas Eve to get the go-ahead for this final infusion.)

I am still enjoying punting the little Toyota around. The previous weekend I had the chance to stretch its legs a bit on a run down to Cranbourne. This was the first time I had had it on a freeway. It felt very stable and solid, and there was no problem keeping up with the other traffic. It isn’t the best car for an interstate cruiser, being a bit noisy on coarse-chip road surfaces. But it was definitely fun. I think what is enjoyable about it is not just the attributes of the car itself, but the fact that I bought such a wildly unsuitable and midlife-crisis advertising vehicle in so insouciant a fashion!

Still, I am trying to make it as practical as possible. I had the full size spare wheel fitted and the steering wheel re-covered at the dealer’s (these things having being folded into the purchase agreement). I also had a sunvisor and the reversing camera replaced, both under warranty. It remains a delightful car in being easy to manoeuvre around shopping centre carparks, small enough to fit in most car spaces, and very sporty in which to whip around corners. I am also getting the hang of various features like the ability to retract the side mirrors at the press of a button.

On one of these shopping expeditions, I left it in a brand-new supermarket carpark, and returned to find dark red fluid leaking from underneath its nose (or so I thought). On checking the service record, I found that the last service had occurred about nine months ago. This being, oddly, the service interval for this vehicle, I took it to my local garage for a workshop once-over. They replaced all the fluids, and declared that no leaks could be found. The previous owner having been pretty spotty with the servicing, I know it has been brought up to where it should be.

What’s been and what’s to come

Before the main part of the post, there is a small addition to the Resources page in the form of the NCI Dictionary of Cancer Terms .

We are now just a few weeks from Christmas. Those who know me will know this is my favourite time of year! (Not.) Still, it brings us to a sort-of review time for 2018.

The last twelve months has been one of numerous changes, and some milestones. I bought a new car, and we replaced some big-ticket things like the ducted cooling and the bed. The Blu-Ray recorder, and some electrical equipment, was also replaced. For the first time ever, my beloved moved to part-time employment. Most importantly, we are to celebrate our twenty-fifth wedding anniversary at the end of this year.

It has also been a huge twelve months or so health-wise. My treatment summary from November 2017 to now is the story of my cancer:

  • radical open prostatectomy
  • subsequent treatment with a physiologist specialising in continence
  • referred to a radiation oncologist, with whom I
    • had radiation therapy, with moderate success
  • then referred to a medical oncologist, with whom I
    • had androgen deprivation treatment and chemotherapy.

Of course the last of these is ongoing. However, being in remission is a great result for the treatments I have received under the care of Dr Parente and the staff of the oncology ward in Epworth Eastern. My GP has been terrific as well — someone I have been seeing for many years. Modern cancer treatment of course relies on adjunct modalities, and I feel my exercise physiologist (a recent referral) will become someone else I rely on.

My progress through these treatments has been one from specific to general, i.e. from treatments focusing on individual mets, to ones that are treating the whole body. This has been driven by the failure of the specific treatments to keep pace with the growth in the tumours.  I believe the progression in the treatments is also from ones with lower potential side effects to those with more potential side effects, but more efficacy. (Time, as ever, will tell.)

The chemotherapy  has been less of a big deal than I expected. I have dropped some social engagements in order to lessen the risk of opportunistic infection — something my immune system is less able to handle than usual. However, I haven’t wanted to become a recluse. So new year resolutions include doing a better job of keeping up with people, both individually and through groups like the local Cancer Survivors.

The chemotherapy is adjunct with androgen deprivation therapy. Their combination gives apparently an increase in efficacy of 10% in absolute terms, over either treatment singly. I started with the ADT some weeks before the beginning of the chemo, and I will continue with that as long as I remain in remission.

(On the subject of keeping up with people, we have been having a lovely time just recently having an old friend to stay for a couple of nights. She came down from Sydney for Die Meistersinger at the opera, which we all saw last night. Amazing! The second act was quite the most spectacular I have ever seen live. The orchestra played every bit as well as the Gewandhaus, whom we heard in the Leipzig Ring, and everyone acquitted themselves extremely well in the principal roles, especially Michael Kupfer-Radecky, the third singer to be engaged as Hans Sachs. And Warwick Fyfe as Beckmesser! Is there a better anywhere? Anyway, I hope that 2019 includes more Wagner as well as more socialising. Wagner’s beautiful libretto also gave me the latest candidate for my memoir title: How spring has to be.)

I need to do more to keep the remaining grey matter active next year, too. I think 2018 was the year of Karl Ove Knausgaard. (I have the final volume of his autobiographical novel sequence to finish off.) I feel that enrolling in a course would keep me at something better than if I were just doing it under my own steam. Some candidates include a couple of online masters programs in creative writing. Doing the internet course Modern Poetry over the last few weeks was great as well; it is very well-supported. Hearing the beautiful German in the Wagner last night, however, and even understanding bits of it, put this further up the batting order as something I could re-engage with.

I would also like to read through In Search of Lost Time again, with a group. Ever thought about it? Or even just wanted to see what the fuss is about? (For example, Maugham regarding it the greatest novel of the twentieth century.) I will do it via Skype, if required. So come on, all you wavering Proustians! Carpe the diem, grasp the literary nettle, and let’s get down to it. I can issue a portentous promise — your lives won’t be the same.

How low can he go?

To anyone who read the earlier version of this post, the changes to this version are just minor tweaks. 

No, we’re not talking about The Donald, but about my PSA. As of yesterday, when I had my last blood test, it was 0.03. I said to Dr Parente “That’s very hopeful, ah, I mean, very positive”. He said “It’s both!”. (He is quite the most forthright specialist I have ever had dealings with.)

This morning’s was only a brief consult, but other matters that were covered included:

  • He wants and expects my PSA to get down to undetectable levels.
  • This achievement will mean I am in remission. (There is a good and very recent article about what remission means in The Conversation.)
  • I mentioned that I had read about some patients having repeated or continuing ADT (hormone) treatment. He said, yes, that was what he was planning to do with me.
  • He said he thought I looked better than when he saw me first, when he felt I had looked rather grey. (In a piece of l’esprit de l’escalier, I only thought, when driving home, that this improved appearance was possibly because I had had my iron tablet that morning! I generally see him in the afternoon. Regardless, I  feel fine.)

Generally I see Dr Parente on the same day as that on which I have the chemo. (The latter runs on a three week cycle.) Today was the exception, as he is going away for a fortnight, and this was the last date on which he could see me before he left. Next chemo session is next week. When I have this, I will book the following session directly with the day oncology centre. This will be co-ordinated with the next consult with Dr P. on 14 November.

It is very convenient to have the consult on the same day as the chemo, particularly as we can leave the car in the car park for Dr P’s practice and walk up the hill. That car park is usually full, however, requiring my beloved to sit in the car and wait for someone to leave. So today I left the car in the Whitehorse shopping centre car park, only seven minutes’ walk from the practice. Spots there are cheap and plentiful; for about an hour, this set me back $2.

This morning’s consult was the first with any specialist on which my beloved couldn’t be present. This was because we are having two new coolers installed, something that is happening even as I write. This booking had been made some time ago, when we thought we would be seeing Dr P the following week. Given that one of us had to be home for the air-conditioning guys, it was easier for me to go to see Dr P by myself, leaving Der Fisch to hold the fort. When I came home we did a Cox and Box arrangement, and she headed off to pursue her numerous tasks, leaving me in possession.

The new coolers (one evaporative and one split system) have been installed. There are now four guys crawling all over our modest abode, resizing vent covers, testing the electricals, putting in new controllers, etc. There was a slight issue in that two of the back parts of the vent covers (the bit that the ducting fits into) were the wrong size. The correctly sized ones will have to be fitted tomorrow. I will still be connecting the stereo back up when that is finished! We have a smaller TV in the study to look at before normal service is resumed in the living room.

Less is more

Chemo session #2 today; all seemed to go well. The infusion was, as usual, preceded by a consult with Dr Parente. He was encouraging, as usual, and today had something more to be encouraging about: the PSA is down to 0.18. (It had been 2.0 previously.) So the ADT has done what it was supposed to do. I am not really having persistent side effects. The worst — and it is not bad — is an itchy and rough patch on the back of my hands, over the knuckles. I am putting a medicated cream on those, which calms them down.

I asked Dr P a couple of questions:

  1. Question: does the fact that the new metastases are in different places mean that the radiation therapy was successful in treating the old mets? Answer: yes.
  2. Question: will the dosage and/or concentration of Docetaxel (the chemo medication) increase over the six sessions? Answer: no. I am scheduled to have the maximum dosage, and this will be the same each time. If I experience worse side effects, the dosage can be reduced. The Docetaxel itself passes out of the system in 12-24 hours. Its effects on the tumours, however, continue for about three weeks. (He put this particularly carefully, not saying “get rid of” or anything like that.)

We had a gap in between the consult and the chemo, the latter being at 12 noon, so were able to go to the cafe in Epworth Eastern (just up the road from Dr P’s practice). We both had a coffee, my beloved the rest of her breakfast, and I had a toasted sandwich. Ambrosial!

Upstairs in the day oncology unit, it seemed like a full house. I got a little more information today from the nurse driving the drip. The sensation of heat around the face I had experienced during the last cycle was due to the anti-nausea drug wearing off; this is a steroid medication.  The powers that be are also pushing exercise for cancer patients. (I had heard a lot about this during the Peter Mac information session a few months ago.)  Fatigue is one of the most widely experienced side effects of chemotherapy, and exercise can, paradoxically, help reduce this. I got a leaflet about a subsidised exercise program, designed specifically for cancer patients. This is doubly apposite for me, as I have my gym membership on hold while completing the chemo, so I will be investigating this.

I was pretty tired when I got home, so had a crash for an hour or so. Still feeling fine. There is enough of last night’s meal left over for dinner for my beloved tonight. I will have cheese on toast, or possibly a jaffle, with my two allowed standard drinks. You beauty! There is more excitement coming up during the rest of the month, with a heater service, installation of the new coolers, a memoir writing class, and a get-together with some other Melbourne ModPo folk. Like, in RL! I tell you, Melbourne in spring is not for the faint-hearted.

Alert readers, and this is both of you, will notice some minor changes in the blog. I have gotten off my duff and created some new categories, and applied them to some posts. The categories themselves have been shuffled up the batting order in the sidebar, so they now sit under the “Follow blog via email” link. You may still have to scroll down to see the categories, but they are there. More to follow. No, I’m not using Library of Congress Subject Headings. I may make an exception for “Anecdotes, facetiae, satire, etc.”. (I’m not making this up, you know! Technically, this was not a full heading, but a standard subdivision. It was replaced in recent years by the much more prim “Humor”: see example.) Will I be going back and applying categories retrospectively? What do you think I am, a librarian or something?

Fine so far

This is somewhat of a place-holder message. The good news: PSA is down to 2.0, down from about 8. (This is the first time it’s headed south this year, I think.) This is the ADT treatment doing its thing. I’m generally feeling fine after the first chemo this afternoon. I have just slightly sore muscles, a bit like having been to the gym. Also subtly out of it; not unusually, though! Other than these hard to pin down symptoms, pretty good.

[This par was pasted in from an email, so may look a bit squashed up.) The chemo goes in three week cycles for prostate cancer. (Lucky breast cancer patients get it every week.) Apparently one can feel pretty ordinary in the middle week. This is because one’s red and white blood cell count are then at their lowest. That is also the week in which one is most vulnerable to infection. (The immune system is compromised by the chemo, so colds, flu etc. are something to avoid more than usually. I asked about going to meetings in that week, and the nurse said, if you know that the people you’re meeting aren’t sick, go ahead.
Anyway, I have lots of information to process. Will be in touch as I digest it all.