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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Stories in the night

There’s a commonality of experience in a hospital which is extraordinarily comforting, in a strange sort of way.     Peter went from the ER to the oncology ward at Duke Medical Center, and I stayed there with him for 75 hours.   While this wasn’t my first experience of this sort, it was the ‘best’ in terms of learning, experiencing, and sharing.   Regular readers know I’m not much for sharing, but in the middle of the night on an oncology ward, in the darkness of a commons room with people from other cancer families, it all hangs out.   There were several of us one night, and one guy with bright red suspenders, asked for our stories.  I told mine, another woman told hers, and then suspenders guy told his.  His daughter, 32 years old, was dying of breast cancer.  The family had been told that day that there was nothing further that could be done medically.   Everyone of us told our story in a matter of fact way, and we all nodded at the common threads – diagnosis, chemo, radiation, drugs, side effects, doctors, a period of remission, a recurrence, and it all starts up again.  I remembered Jasmine from UCLA – during one of Peter’s first chemo bouts a couple of years ago, there was a young woman in the next chair having a transfusion.   She got nauseated, a nurse took her off to help her, and her mother told me the story:  Jasmine was 7 months pregnant, had acute leukemia, couldn’t have chemo of course, and she, the mom, knew that she’d be raising Jasmine’s baby.  Jasmine was 23 years old and died shortly after the baby was born.

These are tales of the wards and the clinics.   This is day to day in a very intense way, as hospital stays are an out of time experience.  There are a variety of emotions going on:  Peter is being cared for, there are dozens of medical personnel attending to his every need, at any time.  A snack – we have ice cream, jello, cheese, crackers, juices, we can make shakes.   Uncomfortable?  We’ll prescribe something to help.  Raise the bed, lower the bed, more pillows, it’s a five star hotel in terms of the attention factor and concierge service.  That’s all good, and enormously relieving for me and others in similar circumstances.

My day to dayness changed in the hospital.  I didn’t have to worry about Peter’s food and making sure he had enough calories, or making sure he takes his medications at the right times, and all the home-based concerns.    Instead, I joined the army of watchers and waiters, who sit by the patient, or wander the halls, or chat to the nurses at night, or to one another at night.   We ask questions, we hop to when there are doctors around, we make sure that we’re present for all consultations, we ask questions, we make sure all requests are filled.  We’re cheered by little things like valet parking and a real Starbucks on the ground floor, and a cafeteria open at all hours.    Even in dire circumstances we feel we’re not alone, and that’s what’s so different.   The burden is lifted and shared for a while, whether it’s in the hands of medical personnel, or with others in the same boat, it all helps.

Now it’s back to the day to day business of daily radiation treatments.

 

 

 

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Things I knew all along, but now I really both know and appreciate them

And these things all come under the heading of Support.   I’m very good at looking up and finding out things – blessings on the Internet, my iPhone and such.   What I’m now starting to get to grips with is People.

I’m absolutely positive that everyone living with, dealing with, or otherwise closely associated with, a very sick person and/or someone with a chronic illness (often the same person of course) needs Support in multiple ways.     I can handle the information gathering, collating, making sense thereof, putting together hypotheses, speculating, asking questions, re-collating, etc.   And I always questions doctors and other medical professionals – I never ever take their words as the final words (said before, but worth repeating on a constant basis).   I can handle that part with ease.  However, there are many many other forms of Support, which can help enormously.

Just as with directions,  sometimes the best way to do something is to ask someone.    While we were in the hospital from Friday through Monday afternoon, two People visited (and yes, I’m deliberately capitalizing Support and People, because I’ve learned something, and I need to keep reminding myself, so capitals help): one was a nutritionist, and the other was a patient resource manager.   When help arrives,  I don’t hesitate to ask, so help arrived, and I asked.   The nutritionist gave us some helpful tips about ensuring that Peter gets adequate nutrition and calories, and validated a lot of what we’ve been doing, so that was great.

But the patient resource manager was outstanding.   It never occurred to me that such help exists, and in such an excellent form.   She organized appointments with radiation oncology, assured us that so and so had been contacted, that our oncologist was updated with all information, that everything had been done, and if not, she set about doing it.   I felt like taking her home with me!   She also said that her equivalent exists at the clinic side, not just the hospital side, so you can count on my following up there.

And last, but best, Support from People who are close to us.   I’ve said before that the role I’m experiencing now is a lonely one, and it is, not to mention often scarey.   No matter how many folks are around, those things are inevitable.   However, for the first time since Peter’s cancer has significantly escalated, we have what we need – we can call on our son and daughter-in-law, and they were with us throughout the long Friday evening, came by frequently during the hospitalization, and the knowledge that they’d hop to for whatever we need is an incalculable relief to both of us.

So, Support in the form of People lessens and shares the burden.   I’m sure there are other People resources out there, and I’m going to hunt them down.  I already have plans to tackle a Duke pharmacist re various issues we have, and all along I’ve never hesitated to badger doctors and other medical professionals, as I’ve said.   But now I ask anyone and everyone about whatever questions I have, no matter how small or seemingly unrelated.   For example,  today at radiation oncology we met a nurse who explained how best to contact Duke in an emergency (see previous blog re my attempts!); in fact, that’s what we ended up doing, but now we know it’s the best way.

So to sum up:  help is out there, just go for it.

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Another town, another ER

Philosophizing, looking at the broad picture, planning for the future – all those things have temporarily gone by the wayside, thanks to another bump (well, more like a major pothole) in the road.

For some days, Peter has been favoring his left leg, and having some motor issues with it.  So on Friday, after an uncertain trip down the stairs, Peter said he thought he needed to be looked at.   So, in my usual manner, I got on the phone, hassled all sorts of people, left a variety of messages, and finally got the triage folks at Dan George’s practice at Duke, and they said – surprise – go to the ER.  (well, ‘finally’ was more like 10-15 minutes, but of course I left messages saying it had been far too long, etc.).

We arrived at about 3.30 pm on 11 January, and I’m writing this blog around midday on Saturday, 12 January, after a long long night in the ER, a wide variety of tests, an MRI, and the result being spinal incursion at T5 and T3.   Peter was given a massive shot of decadron, and slept and awoke refreshed, actually hungry, and pain free for the first time in many weeks.

For various reasons he’ll be in Duke University Hospital until Monday afternoon, after his first of 10 radiation sessions.   Same procedure as last time, 3000 miles away, slight variations, but overall the same.   If Peter develops further weakness in his left thigh, or elsewhere, then there’ll be immediate emergency radiation.

We didn’t expect this – who does – but I’ve been very concerned for some time, and clearly the concerns were justified.    So, we’re navigating through another really bumpy patch, but the good news is that Peter actually feels ok, and can sleep well for the first time in many weeks.

And the message in all this?   Pay extremely close attention to your body, or your partner’s body – watch for any signs, investigate, and don’t let things go on for very long, no matter what docs, other medical professionals, or even the patient, says.   In fact, in my experience, the patient often wants to believe other than that a downhill slide may be in progress, but persist, and with luck and good sense, a greater crisis can be averted.

I jump on the Internet, avoiding (I hope and usually succeed in so doing) the crap sites, of which there are vast numbers, and try to find explanations for whatever symptoms or oddities are happening.   It could be just a hint of something different; everything, and I repeat EVERYTHING, needs to be investigated, thought about, researched, and action taken.

And now I need to try to get into the Zen of hospitals – which mainly means waiting, and then more waiting.   Followed by a bit of action, and then waiting again.   More in a couple of days, unless I’m too into the Zen zone to do anything – not at all likely!

 

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Another turn in the road

Here’s something to ponder:  we had our second appointment at Duke University Cancer Center yesterday (7 January 2013).   This was to find out and discuss the results of lab work and scans from 4 January 2013.   The pondering is this:  Peter’s PSA count had risen from about 76 in November 2012 to 236 on December 19 and 234 on 4 January.  Well, further pondering explanation:  it’s a huge jump, possible assay differences between UCLA and Duke?   Possible other issues?

It’s not that we don’t accept a rise in PSA, it’s just a rather unusual leap.  Peter’s had increases before, needless to say, but never as dramatic as this.   And it’s always gone up in increments.   Also, the fact that it’s more or less stable 3 weeks apart is also puzzling (good, but puzzling).

So, my theme once again:  investigate, question, inform oneself.   I’m in the process of so doing re the PSA rise, and will continue until I/we have a satisfactory explanation.

Is this the turn in the road of the title?  Yes and no.  Other than the huge increase in PSA, the results from the scans and blood work are ok – neither wildly good nor wildly bad, just ok.    I won’t go into details here, just a note to say that we’re continuing on the current course with Xtandi, Lupron, and monitoring every 3 weeks, PET/CT every 6 weeks, Xgeva every 6 weeks.

Here’s the thing:  we’ll concentrate on what we can do something about, namely Peter’s weight, and physical strength, plus general well-being.   We can’t control the PSA, nor other aspects of the disease, but will continue to work with the medical team to ensure that everything possible and that exists,  is and will be done.

An interesting side bar:  while we were waiting in the very nice waiting room at Duke University Cancer Center, I overhead a group next to us mentioning Provenge.   Now, that means only prostate cancer, so I eavesdropped on the rest of the conversation, which was clearly a clinical trial interview.   When that was over, I talked with the couple involved and we had an interesting discussion.   Turns out, the guy was diagnosed about the same time as Peter, but his disease, while also aggressive, has taken a different path, with lymph node involvement and subsequent radiation, but he now has extensive bone mets in his long bones primarily.   The guy went off to do something in a bit, and his wife and I chatted for a while about what it’s like to live with someone with advanced disease.  We were just getting into ‘men’ and peculiarities of ill men, when we were called into the doc area.   I wish I’d gotten their name, but we’re likely to run into them again at the clinic.   The most interesting part to me was how she talked about her husband’s not admitting to pain, not sleeping well, not eating well, but was still very optimistic and working on various projects for their son’s business.

So I wonder how much the mental activity contributes to a sense of well-being (or as much as is possible under the circumstances) – in Peter’s case, I’d say a lot, and I’m sure it’s true for others as well.   Mental stimulation and activity is so important in just about every aspect of one’s life.   Even after far too many years (yeah, I’m old, even older than Peter, who is nearly 67), there’s still an enormous hunger for finding out, even learning, and discovering new things, or putting together pieces of information and creating a new insight.

 

 

 

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Starting a new blog

This is just a note to say that as of today, 6 January 2013, I’m starting a new blog, which will focus on the day to day aspects of dealing with a very serious disease, from the viewpoint of the non-diseased one.  (See, I continue to avoid the ‘caretaker’ word).

For those new to kape (Kate and Peter Noerr), you can have a look at the previous blog (which I’ll attempt to link in at some future point, as well as design this blog, etc.):  http://kapetripcanc2012.wordpress.com.

Over the next few days I’ll be setting the blog up properly, learning how to add pictures (I never did in the last blog), adding color, and so on.

My reason for this blog?   Simple, I think:  3.5 years ago Peter was diagnosed with a very aggressive and rapidly spreading form of prostate cancer.   Over this time period, he’s been through every therapy that currently exists, including surgery, chemo (twice), and most recently, radiation, plus a wide variety of the newest drugs, and immune therapy.  Nothing has worked for more than a short period of time.  We’re now on the latest drug, Xtandi, and so far so good, although it’s only been about 2.5 months since starting it.

So, I have a lot of experience in dealing with living with someone with an extremely serious disease.   I want to share what I consider to be practical advice, perhaps some ‘words of wisdom’, thoughts on what to do, and what not to do, how to best inform yourself, how to deal with the vast array of medical personnel, and generally try to create a picture of what happens on a day to day basis.

I’m sure everyone is familiar with the ‘don’t sweat the small stuff, and it’s all small stuff’ mantra/book title, etc.   Well, day to day living with cancer consists of a huge amount of small stuff, with occasional excursions into big stuff – as in bad news because the disease has progressed more, so now what happens, and so on.

And I do sweat the small stuff, in a way, as it’s so very important to allow Peter to focus on trying to heal, and sometimes just trying to keep going.  However, it’s also important to judge when to go out and do things, even if it’s difficult for him, to keep his focus looking outward and forward.

For those familiar with the previous blog, as well as for new readers, we’re now living in Durham, North Carolina, and Peter is being treated at the Duke University Cancer Center, whereas previously we were at the UCLA Medical Center until Thanksgiving, 2012.  We made the trek east primarily because we both need the support of being near family and friends; I worry about needing help when there’s a crisis, or just whenever; Peter worries that if something happens to me, he’ll be on his own, and just plain worries about me.  So these worries are significantly alleviated by being here in Durham, although I must say that my strongly independent nature does sometimes make it more difficult than it needs to be!

More in future days, probably not daily, but frequently.   The initial posts will be relatively long, as I think I’ll need to clarify why I’m saying this or that; and why this or that is important, based on history, experience, and so on.

So long for now.

 

 

 

 

 

 

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