A Cancer Update: My Surgery Is Scheduled For December 8

My original post about my prostate cancer was written on August 14. At that time, it looked like I would have an appointment with my urologist in September and we would make the final decisions about the treatment and probably schedule the surgery for the first week in October. Well, things didn't turn out that way and now my surgery is "definitely" scheduled for December 8.

Here's what happened:

On the appointment date in September, I got an MRI done so the results would be available when I saw my urologist. It's supposed to give a better picture of whether the cancer has spread beyond the prostate. The good news is that it didn't show any spreading. Of course, my urologist did point out there's always the possibility that it has already spread in microscopic pieces too small for the MRI to pick up. Thanks a lot, Mr. Upbeat Health Professional! Still, it does underscore the fact that all forms of treatment (and even non-treatment) are just a roll of the dice, and we make the best decisions we can based on the probabilities as we understand them.

Radical prostatectomy surgery (removal of the prostate) was still deemed the most effective choice for dealing with - curing, actually - the cancer. I just needed to decide if I wanted to go with "open" (traditional) surgery or "robot"(-assisted) surgery. Robot surgery is less intrusive, leaves less of a scar and allows for faster initial recovery, so I would be able to leave the hospital 2-3 days earlier. However, it also costs $3,000 more, and none of that would be covered by Medicare or my private health insurance. Based on the idea that the cost of the general surgery would be nominal (from my experience with knee surgery a few years ago), I (in consultation with Ann) decided to go with the robotic option. That, however, meant that the surgery would be done by another urologist, a colleague of my original doctor, who has done more robotic surgeries than anyone in Australia. So we set up an appointment with him, which was scheduled for one or two weeks later.

I also got a hint that the surgery was going to cost more than I originally thought. So during the time before my next appointment, I made some inquiries about exact costs and discovered that I (and Ann) would end up paying $9-10,000 "out-of-pocket" (the amount that would not be covered by Medicare or private insurance). This was shocking to us, as it represented about 6 months of us aggressively saving.

Yes, I know that some of you are thinking "$10,000 is nothing compared to the extension of one's life and the avoidance of active cancer." And, you're (mostly) right. But where do you draw the line? Would you pay $20,000? 50,000? $100,000? Would you sell yourself out as someone's slave (or indentured servant) for a year? For the rest of your life? So if the line is going to be drawn somewhere, is it that odd to think it should be drawn at less than $10,000? Especially if one lives in a country, like Australia, with a public health system in which you can get the surgery done for FREE. (Or, rather, it is paid for through a collective organisation funded by one's own, and other citizens', taxes.)

You see, I had been unknowingly moved to the world of private healthcare (as opposed to the public health system) by following my general practitioner's referral without thinking about it too much (combined with the ignorance of an immigrant - that's me! - about the difference between the two systems). So I took it upon myself to learn more about how all this worked.

I am a little dismayed, though, that I got to the point of scheduling my surgery before there was discussion of what it was all going to cost me. Clearly, I should have been asking more questions earlier. Still, I think the whole process should be like many of the restaurants in Australia - which include a copy of their menu outside the door so you can know in advance what the meal is going to cost and make an appropriate decision about eating there. (It would be great if more American restaurants did the same thing...)

Anyway, so my appointment with the robotic surgeon/urologist mostly involved me asking "how do we get this moved to the public system and what effect will that have on the treatment?" One important point was that the robotic surgery was not available in the public system. After hearing my concerns, he thought that going public would be a good option for me. And, he offered to refer me to a clinical trial that was being run by him and the other urologist/surgeon (and the University of Queensland and the Australian Cancer Council). It's comparing the effectiveness of robotic vs. open surgery for radical prostatectomy. Once in the study, I would be randomly assigned to one of the treatment options; so there would still be a chance to have the robotic surgery. Open surgery would be done by my original urologist, and robotic surgery would be done by the other doctor - both essentially at the top of their fields in Australia.

To make a long story short (oh, wait, too late!), I said "yes, please, sign me up!" I was given very little information about when things would happen, but was told I might have to wait 4-6 months for the surgery. That concerned me, since the whole idea is to cut out the cancer before it can spread from the prostate. I took solace from the fact that prostate cancer tends to be very slow-growing. Ultimately, though, I went through the bureaucratic phone tag at the hospital that is running the study and managed to connect with the coordinator of the clinical trial. She was very helpful and provided me with all the information I needed. She also got me scheduled for an intake appointment, where I was officially added to the trial and "randomised". It turns out I will be having the open surgery with my original urologist. I'm a little bummed that I was unable to get the less-invasive robotic surgery, but I have a great deal of faith and respect for the experience and skills of the surgeon who will be performing the operation. And, of course, Ann and I are happy that we have "saved" $9-10,000. Hooray for socialised medicine!

I have been scheduled for a "pre-admission clinic" on November 24 (Thanksgiving in the USA!), where I will spend several hours in the hospital meeting the professionals who will be involved in my operation, as well as having various tests done and analysed. Then, I will go in for my surgery on December 8 (the 70th anniversary of the USA declaring war on Japan in World War II - the day after the "date that will live in infamy"). I will then be in the hospital for 3-5 days, after which I will be at home recovering for six weeks. It should make for a mild Christmas season....

A summary of how I'm feeling about all of this these days:

I'm happy that everything has been organised. I'm thrilled that the Australian public health system is continuing to impress me. I'm looking forward to (probably) being cancer-free and eventually partaking in the future adventures life has in store for me.

I'm a bit anxious about the possible after-effects of the surgery - see my previous post for details - and disturbed by not knowing how severe, or not, they will be. There's probably a little depression, but I honestly don't think it's having much of an impact on my day-to-day life. I still laugh when I talk about my cancer. I'm still fatalistically hopeful...or, perhaps, hopefully fatalistic.

I look at the probability ambiguity as "it's always possible to lose," but I still hope (and try to plan) for the best. We'll know the result in the end, and it will be what it will be. I figure that if I die in the next 10 years - from cancer or being hit by a bus or anything else - the surgery will have been a "mistake" (but I'll be dead, so I'll never know or care). And if I live longer than 10 more years, I think I will have made the right decision.

More news as it comes about, which will probably be after December 8. However, I'm planning to compose another blog entry shortly after this one that talks about how I found out I have cancer and my thoughts on the ongoing PSA debate. [UPDATE: It has been written and can be seen here.]

A Zuperfliegen Update: Sehr fliegen für einen weißen Mann

Zupe recently celebrated his six-month birthday! Kind of amazing to think that we are already halfway through his first year.

The BIG news, though, is that he is off the oxygen! We took him in for his second sleep study last month. (His first sleep study was shortly after he was born and was the determinant for him being placed on oxygen.) He breathed just fine and the doctors said we could take him off the oxygen. We were floored, because we had originally been told that he would likely be on oxygen for a year and that only one child had ever been taken off after three months, and even then they were dubious about it. When we asked about that after last month's decision, the doctor said "I don't know why you were told that; we take children off after three months all the time." I guess the first nurse was just helping us adjust our expectations.

So that's pretty cool. Having him on oxygen was annoying, but totally manageable. We just had to make sure that we always had a tank with us, and that we chose the best route for the tubing to follow when we walked around the house. So we could still do all the things "normal" babies and parents were doing, we just had to think/plan a little more. Still, it was real relief to hear we didn't have to do that any longer. Most of the relief was, undoubtedly, just knowing that our son was finally breathing well on his own!

The other developmental advance is that we have heard Zuperfliegen laugh! It happened several weeks ago when we were just playing around with him. What a delight that was! Shortly after, Ann was able to catch his laugh on video, which you can see here - there are other videos of him there, too. The funny thing is, he didn't laugh again for weeks and weeks! I guess Ann and I are not as funny as we thought; or, his taste in comedy is just so much more refined than our own! The "drought" did end this evening, when Ann got him to laugh again. We also think he has his own special short laugh, which is kind of like that of the Sheldon character on The Big Bang Theory.

In general, he's doing really well. He's eating and growing like a champ without getting fat (we think), he's generally very mild and well-behaved, and his eczema has cleared up tremendously with the application of steroidal cream (which we're hoping to eventually no longer need).

We're still a little concerned about the development of his gross motor skills, particularly with regards to being on his stomach (he's still not a fan of "tummy time") and his ability to roll over (which he has yet to do, though he's getting closer). We're mostly feeling that he is just going at his own pace and we're letting him step to the beat of his different drummer. But we also have a couple of appointments with physiotherapists to get some more opinions.

As for me, I continue with my revelation of "wow, this experience of being a father and having a child in one's life is pretty cool!" It all sounds pretty simple - and perhaps banal - but anyone who knew me in the first 40 years of my life should be shocked. I am very aware, though, that a big part of me finding the experience pleasant has to do with Ann both being a such a great mother and taking a huge share of the childcare responsibilities. Fortunately, she's really digging the experience, too.

I also want to remind you that more about Ann's perspective can be found at her blog: http://nnv-a-blog-downunder.blogspot.com. She also posts a LOT more pictures than I do - with even more at her photography blog: http://nnv-inmyeye.blogspot.com

[Update on 24 October 2011]: Zupe went to his appointments with two different physiotherapists - one in the private healthcare system and one in the public healthcare system. Both said he was doing fine and they were generally unconcerned about his development. At the same time, they showed Ann a variety of exercises we could have him do to aid proper, balanced development. Meanwhile, he's also "talking" an awful lot. It's mainly various guttural grunts and the like, be he really goes on for a while sometimes! We're pretty pleased with all this!