Digging around laws, insurance providers, etc., gives some interesting information

I came across a blog by an oncologist discussing the cost of Abiraterone (a chemo drug which Peter had, but which failed after 4 months).  A patient of his had an enormous copay for the drug, something like $2300/month.    I’m all too aware of this sort of pricing, but thankfully (in a weird way) Peter is over 65 and therefore subject to Medicare A and B.  However, in a bizarre move by the Congress at some point in the past,  Medicare does not cover the cost of prescription drugs (no doubt fueled by the pharma lobbies).   This has been going on for some years, and there are a series of quite baroque procedures (not to mention expense) for getting adequate drug prescription coverage.

But I digress – what I found out from this blog is that there is something called oral parity.  Now I knew from my research that chemo drugs administered through infusion, and therefore done in a clinic or similar, are covered both by Medicare and private insurers, under a reasonable copay situation.   An oral parity law has been enacted in 19 states thus far, with quite a few considering such legislation.  This means that pill-based chemo drugs (such as the Abiraterone mentioned above, and the Xtandi drug Peter takes) will be treated on the same basis as the infusion-based drugs.    Looking at the map of states which enacted legislation, and those which are considering it, it’s interesting (and unfortunately predictable) to note that those states seemingly avoiding the whole issue tend to be the most conservative ones, including our current home state of North Carolina.

However, I’ve joined the discussion group to help promote oral parity nation-wide which is  Patients Equal Access Coalition, or EEAC.  The blogging oncologist is Dr. Craig Hildreth, and the blog is in cancernetwork.com, for anyone who is interested.  By the way, he calls himself the happy oncologist.

So that’s today’s news.   And the message here is to read everything.  Sure it’s ok to dismiss the vast majority of what’s out there, but occasionally a gem emerges in a the goop.   However, this particular blog is in an authoritative site, but I normally have gone right by the happy oncologist.

Meanwhile, we’re very much enjoying a visit from Pam Millar, Peter’s sister, who flew for around 24 hours, with an elapsed time of 34 hours to get here from Port Elizabeth, South Africa.   More on the visit in the next post.



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Another lesson learned

It seems there’s an unending amount of learning to do when dealing with a very serious disease.   Although we’ve been trying hard to stuff Peter with calories, and he’s more or less maintaining his weight, he’s become quite dehydrated.  This is largely because his radiation-induced very sore throat makes it really difficult to swallow.   We’ve tried all sorts of things, magic mouthwash, lozenges, painkillers, but nothing has been truly successful.

So yesterday’s visit with the radiation oncologist led to an IV infusion of saline and dextrose.   The initial intent of the appointment was to discuss radiation procedures and Peter’s thoughts on the matter.  Note:  everyone who knows Peter at all will recognize that Peter will always come up with a change, possibly an improvement, a new angle on something, and wants to discuss it – he’s still Peter!

Well, we never did discuss that, as Brian Czito (radonc doc) focused immediately on Peter’s condition, the side effects, how he’s coping, etc.   Several hours later, we emerged from Duke after the infusion, and with Peter feeling somewhat better.   Brian emphasized that we could return anytime for another infusion in the radonc clinic, and we almost certainly will in the next day or two.   And coincidentally, the sore throat is improving.  Brian said it would likely do so around the time of our appointment, and more or less on schedule it did!

So here’s the lesson:  hydration is so very important.  Dehydration can increase fatigue, and generally raise havoc with the body.  And someone in Peter’s condition can get dehydrated extremely quickly.   We monitor his pulse rate regularly, which is a leading indicator for dehydration, and indeed Peter’s pulse rate has been quite high, and his blood pressure quite low – the body copes in ways which seem strange to a lay person, and possibly to an expert as well I’d bet.

So everything related to Peter’s condition is on a very high alert status.  We both watch everything, but sure enough, while we knew Peter was dehydrated, we didn’t think to ask for IV help.  Yes, it had been mentioned before, but now it’s in the active arsenal, so to speak.  All the docs we’ve seen (and there have been many, including of course Dan George and now Brian Czito has emerged as an important figure) have all spoken out strongly on both the need for Peter’s physical rehabilitation and their belief that he can achieve this, which is enormously encouraging.

I think I need some tools.  There are disease issues, side effects issues, weight issues, hydration issues, physical strength issues, and the ever present state of mind issues.  The interaction between all these things is extremely complex, needless to say, and I spend a huge amount of time trying to put together the meaning of x pain or x symptom, and every new piece of information adds both to the complexity and also to the possible linking together and further understanding.   As I tell all the docs, they’re the medical experts, but I’m the Peter expert.  I’m also a very good problem-solver, and will gnaw on a piece of information until I can get it sorted out, if indeed it can be.   There are a couple of things I’m gnawing on now, which I’ll report in due course.   And, in a true gnawing manner, I’ll badger (!) the docs with my observations and thoughts until they take notice or give me satisfactory information.

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We’re into the slough of slogging through side effects or disease symptoms

I’ve said this before – it’s harder to deal with the day to day of living with someone with a very serious disease than it is to deal with a crisis.   We’ve had more than our share of crises, and we’ve also had lengthy experience of dealing with daily or regular out patient treatments.   Now it’s the ups and downs of side effects, and also the disease manifestations.

In an earlier post, I mentioned that we were astonished at the huge increase in PSA from 76 or thereabouts to 234 in a very short period.   We were both convinced that this must be an anomaly, perhaps due to different assays, different labs, etc.   Well, since Peter’s PSA is now in the 400s, that clearly wasn’t the case.   We did lots of investigating, but then the ER and radiation treatments of a couple of weeks ago put that to the side.   Permanently, as it happens.   The point?   Take everything seriously.  Maybe something will turn out to be nothing much; but maybe not.

So now it’s another stage.    I’m sure everyone knows that when one is dealing with a voracious cancer, any aches and pains, queasy feelings, and the like, give rise to the thought that maybe it’s another problem.   We now know that the various pains Peter had in his flank area on two occasions were precursors to serious spinal issues.   So now we’re faced with another possible set of pain and queasiness issues – close monitoring is all we can do unless it continues.    I’ll post updates on this, whether it continues or ends.

We do know however that the really bad sore throat, now moving down the esophagus, is definitely a side effect from the radiation.  It’s day 10 since the final treatment, and the radiation oncology doc said it would be 10-14 days before side effects lessened or ended, so we’re hoping that Peter will feel better from that soon.  It’s definitely improving, but more on a two steps forward, one step back basis.

It’s also amazing to me that we adjust as we go forward.   There was a time not very long ago when Peter went for daily walks, ate lightly but somewhat normally, but now it’s tiny walks, calorie-laden liquids only, and large amounts of rest and sleep.  This is today’s reality – we’ll see what tomorrow brings.

Today is our wedding anniversary – our present to each other is that we’re here, together, still.    That’s all we want and need.



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San Francisco Firefighters to the rescue!

An enormous exaggeration, of course, but I had a phone call from Tony Stefani, President of the San Francisco Firefighters Cancer Prevention Foundation (www.SFFCPF.org) of which I am a board member (currently in absentia), two days ago.   Tony successfully battled a form of kidney cancer a few years ago, and went on to establish the Foundation, which is making extremely good progress.   His call was to update me on his latest possible cancer scare.   He’d gone for his regular checkup, and found there was a possibility of prostate cancer.  However, he’d just come from a visit with his urologist, and all is clear, which is great news.

Of course he asked after Peter (as do all the board members), and then talked about his (Tony’s) struggle with weight and strength during and after his various cancer treatments.   He said he’d gone down to 132 pounds (and this was a very fit firefighter), couldn’t eat, didn’t want to do anything, was too tired to move – sounds familiar?   He said it took him 6 months to climb out of that morass, and to feel he was on the road to getting well.   This cheered me enormously, as it’s so very encouraging to hear from someone who has experienced exactly this sort of thing, and completely understands the issues.

So I’m determined to continue the calorie intake process for Peter (2300-2500 calories is a lot when you don’t want to eat, you have an extremely sore throat from the radiation, and nothing appeals anyway), and to make sure he’s walking and possibly extending that to a stationery bicycle and/or treadmill in a short while.

Here’re more day to day thoughts:  forget about the fact that it’s a long slog ahead in terms of regaining weight and strength; forget about the fact that the disease is accelerating; focus 100% on today’s small victories.   A gain of 1/2 pound is great.  A somewhat longer walk is exciting.  The sore throat is improving.   These are what count, and what make up the day to day experience for us.    And outside our world of cancer, there was a big storm in the night – the Triangle area actually has weather!




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Day to day activities are immensely time-consuming, but vital

We’re now on the 5th post-radiation day, and today was the first day Peter has emerged from the house.   He had labs at Duke in preparation for tomorrow’s appointment with Dan George (oncologist).   It’s times like this when I realize how hard it is for Peter to do something as simple as go to the clinic for a blood draw.   It’s hard mainly because of his very high fatigue level, which seems to be lessening a bit, but not a lot.   He needs to put on weight and build more muscle, and that should help eliminate some of the fatigue – and this is where a lot of the time-consuming activity comes in.

For example:  in order for Peter to consume up to 2500 calories daily, and for him to be able to intake this amount of food, he has to eat very frequently.  Also, because he needs so much rest, he spends a lot of time in bed, not always sleeping.   So the ritual starts around 8 am and continues on a 2/3 hour basis until 10 or so at night.  If we’re going out (as above), then I plan around that.

Of course, in addition to the food intake, he has daily medications, some of which are relatively demanding in terms of ‘with food’, only under these conditions, etc.  In between these things, I catch up on emails, do the shopping and the general admin associated with running a household.   Lately that’s included preparation for Peter’s sister’s forthcoming visit from South Africa.  Given Peter’s very erratic sleep schedule, we decided it’s best for her to stay in a local hotel, so that’s done.

And on it goes.   While I’m hardly a stranger to busy days, having spend many years in the corporate world, but meetings, business travel, reports,  plans, etc., are quite different from my current daily schedule.   However, I plan, I organize, I prepare, so in some ways it’s not so different (who am I kidding!).   I’ve certainly developed a new and heartfelt appreciation for all who toil as helpers for the sick, the infirm, and so on.   It’s hard, and the dependency of the sick/infirm person is somewhat daunting.   Peter frequently says he doesn’t know what he’d do without me – well, he has me, for better or for worse, as they say, and it’s certainly well into the ‘worse’ these days.   It’s so important that Peter be as comfortable and as untroubled as possible, so he can focus on coping with the disease, and trying to heal.   That’s my focus, and that’s why the day to dayness is so very critical.




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Back to ‘normal’ and I continue to be thrilled with Duke Cancer Center, and Duke in general

Radiation 2 was completed on Thursday, January 24.  When Peter completed Radiation 1 at UCLA he was given a certificate for showing courage, perseverance, and dignity.   Duke doesn’t do that (hooray!), but the radiation techs indulge in hugs and farewells, and most folks take pictures.   We did too, and one day I’ll add them, especially the horror mask.   Since Peter had radiation to his neck, he had to have a custom-fitted mask on during the sessions to prevent any facial movements.   This mask is thermoplastic, heated to soften it, and then put on the face to mold it to its contours.   A picture of Peter with the mask on is quite scary and certainly worthy of any horror film.

Every time a major treatment is finished, there’s a sense of ‘now what’.   We’ve had all too much experience of this.   There have been 2 lengthy chemo series, one of 6 infusions, and one which would have been 10, but ended up with 8, and that was too many, as Peter’s body couldn’t handle any more; there was Provenge; there were various new drugs, all of which had a limited positive effect on Peter, and most recently, the two radiation series.  I’m sure everyone with a chronic disease feels this way.  One feels good about undergoing treatment even if it’s unpleasant – something is happening, the disease is being attacked by drugs or burned by radiation/chemo, there are nurses and techs and doctors and other medical personnel, all available during these treatments.   And then they end.   I’ve said this before in other ways, but I feel oddly safe during all these activities.  Probably ‘activities’ is the right word.  I ferry Peter around, I spend time waiting, I stay in the hospital, I make sure that everything is coordinated, I talk with anyone and everyone (previous post!), and then we’re home with no agenda other than daily medications, daily nutritional requirements,  and fighting the disease.

My praise for Duke this time?  The radiation oncology doc’s nurse told us about all sorts of people we could have access to:  a dietician, patient resources, etc., and she set up appointments.   We went to see the dietician, who had all Peter’s records (could their system be somewhat integrated?), and had discussed Peter with the hospital nutritionist we saw.   The two of them had estimated Peter’s daily calorie intake for maintaining weight, as well as his protein requirements.   Much to our surprise, they said that Peter needed a daily intake of around 2300 calories to maintain his weight, despite the fact that he spends a lot of time resting.   It never occurred to us that fighting a disease increases the metabolism, and so does radiation and chemo.   If Peter is to gain weight (our aim) then he has to increase that count of course.   The dietician had lots of additional tips and gave us a heavy bag full of drinks and powders and coupons and recipes.  So it’s chocolate pudding, custards, ice creams, rich milkshakes, deviled eggs, cream soups, Krispy Kreme donuts.   Sounds good?   Well, yes, but Peter struggles with ingesting food and has no real interest in it, which is quite common apparently.    Our regime now is something calorific every 2-3 hours, even if Peter is sleeping during the day.  He’s gained just over 1/2 pound, and is holding that.

I like everything about Duke.   It’s very different from UCLA, but the difference is what we need.   At Duke, the patient is the focus, not the research or the teaching, both of which are however superb.  The entire staff, from the valet parking staff to the guys ferrying gurneys around, to the volunteers in the waiting rooms, to the vital signs nurses aides, and on up the medical hierarchy – all are pleasant, helpful, interested in you,  and genuinely so.  Also, everyone is knowledgeable, or if they don’t know the answer, they seek it out and let you know right away.   We feel part of a connected community, and that is real Support, and real People.

When dealing with a very serious disease, it’s an incredible relief to know that everyone at the Duke Cancer Center is there for us, at any time.   I like going there, whereas I used to hate going to LA (for those who don’t know, we commuted from San Francisco for 3 years, and then sort of moved to LA for a few months when it seemed  this would make it easier for Peter).  LA always represented illness and difficulties to me, and I used to feel a major fatigue as soon as the plane landed, or we got off the shuttle from the airport to Westwood – Peter didn’t feel this overtly, as he looked at the trips as a steps towards dealing with the cancer, but I could never quite manage that attitude).  Duke and Durham feel good to me.

So on to labs and oncology appointments next week.

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Talk to everyone, ask any question, read everything, evaluate for yourself, and be a pain in general

Despite all my high-flung words, I’m as guilty as anyone when it comes to accepting things and jumping to conclusions.  For example, Peter’s undergoing focused radiation for the second time.  This time, I had thought the emphasis was still on his thoracic spine (T1-6), but after talking with the radiation oncology doctor yesterday for the weekly appointment, it seems that the critical area for radiation is in fact the cervical spine, although they’re also burning the thoracic area.   Since T7-11 were critical in November, I just assumed that the T vertebrae were still the major concern.  Of course, Peter had been having lots of issues with his neck and shoulders, so I should have twigged.

Once again, I’ve reminded myself, keep asking questions, keep prodding and poking the docs and nurses, etc.    It’s easier in the hospital setting than in the clinic, it seems, at least for me.   So, in yesterday’s appointment, we looked at Peter’s scans, read the reports, asked lots of questions, which we’ll continue to do.   We need to step up making sure that we get copies of all the reports and scans, so we can study them at home, and then ask more informed questions.   Which brings up an interesting, if somewhat macabre point:  I have several pictures of Peter’s skeleton from the bone scans on my iPhone – and they came in handy when the radiation docs in the Duke ER hadn’t yet received the UCLA reports, prior to starting this current round of radiation.

So it’s a constant battle – don’t accept anything at face value, always ask questions.   Often you don’t know that you don’t know of course, or you make false assumptions (see above).  Try to figure out why you made those assumptions, and then be warned for the next time.   Yes, it’s easy to just go with the flow, so to speak, but in the health care environment, that’s the wrong way to go.   If you do this, then you might be the person I overhead saying that her husband was just diagnosed with prostate cancer and she was sure he was going to die any moment and what should she do…

I did speak with her and told her about Peter, 3 years and 7 months later, and with an especially aggressive form of prostate cancer.   Whether this made any difference to her or not I don’t know, but I felt she needed to know that things could be done.   But then I’m often an interfering so and so.   And in the medical environment, with a seriously ill husband, this is a good thing.

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