History

Prostate Cancer update:  Charley's back at school and doing okay.  It turns out that the biopsy of his prostate showed a tiny bit of much more aggressive cancer than the original biopsy showed.  It was very localized and the blood test at one month showed he had no cancer in his body.  So that means he was probably right to have his entire prostate removed.

On the other hand, recovery is a lot worse than we had been told by the doctor and his nurse.  It's a lot worse than most of our well-wishers predicted.  "Oh my uncle, brother, neighbor had that done and it was no problem at all."  I think that uncles, brothers and neighbors don't like to complain to people outside their immediate family.  That is understandable.  But what I don't understand is why the hospital educational system was so misleading.  For example, they told us many times that it would be 3 to 6 weeks before he was back at work.  He was in no condition to go back to work at 3 weeks.  He's a teacher, not a brick layer or something.  He does have to stand all day, but he doesn't have to pick up heavy things.  Even so there was no way he could go back at 3 weeks.  

Even at 4 weeks, it was difficult, but he went back.  This was partly because he was worried about work and partly because he was spurred on by the "3-6 weeks" prediction.  He figured that he was still at the young end of people who have prostate cancer, so he "should" be on the short end of the recovery spectrum.  When he went back to the hospital on Wednesday of week 4, the nurse asked him when he thought he'd be ready to return to work.  She was surprised to learn that he was already back.  None of the other guys who had the surgery the week he did had returned to work yet.  So he IS at the short end of the recovery spectrum, but why in the world did they say 3 - 6 weeks if it's really 4-8 or even 6-10?  That's just one example of their overly optimistic predictions.  The entire process of recovery has been much more difficult and painful than predicted.  Post-surgical catheter care is a whole other story and not a pretty one!

It was actually quite nice to have him home.  I wonder how much of this was due to having 3 weeks away from school and how much of it was the shock of facing his own mortality.  Whatever the reason, we had a chance to notice that we still really like each other!  We spend so much time getting through life that it's hard to take time to notice why we are doing it and with whom we are traveling.

I've known Charley since I was 15 and we've been a couple pretty much since we met.  I'm going to be 60 in August, so that's 45 years!  He really is my "Life Partner."  It was lovely to have the time to talk about that and talk about plans for the future without him jumping up to go to work or to work downstairs on lesson plans and IEPs.  

Life is really hard and unpredictable.  It's that way for everyone of us.  It's easier if you go through it with a friend.

All Right

Yesterday Charley was in so much pain he took 2 narcotic pills (maximum dose) and he was bleeding rather profusely outside his catheter.  He can't control it, so I've got blood drops all over the floor.  There was such a quantity of blood and pain that the nurse advised us to go to the ER.  Barb H generously agreed to come over and sit with Sam while we went.  She not only sat with Sam, she gave him his treatments twice, fed him, and came up with some good ideas for taking care of him.  Oh and washed dishes.  What a rare and wonderful person she is!

Anyway, as we drove to the hospital, Charley knelt in the back seat, rocking to control the pain and singing "He's A Ridiculous Man".  He sounds a little bit like Bono!  That was a moment to remember.  I was driving, trying not to have an accident or hit too many potholes, and listening to my poor, pain filled spouse sing amazingly well.  I could live in that moment, unwrapping it, for a long time!

Turns out that his catheter was clogged, and he's having bladder spasms.  Neither situation is really very serious, it's just that we've never dealt with this situation before and we over react, apparently.  Once again, we see the difference between the medical point of view and the experience of the patient!!!!  They think everything is going well and we think this is one incredibly bad experience!

Well-wishers keep telling me "It's going to be all right."  What does that mean exactly?  When is it going to be all right?  What is this "it" that's going to be all right?

Actually, my past holds lots of moments.  They fall into many categories like absolutely wonderful, pretty shockingly awful, sad, painful, joyful, funny and all right.  I'm pretty certain my future holds a similar list of moments.

In fact, today, this moment, "It's" all of the above.  Most moments are.  I think that's why people recommend we learn to "live in the moment".  This moment is so complex that, if I focus on it with all I've got, I still won't realize all of it before it's over and the next moment begins.  This moment holds the whole world.  And that is riches enough for anyone.

Caregiving

I'm running an ICU here.  I've been neglecting Sam while I take care of Charley and Sam is in not so good shape.   Charley continues to be in pretty bad shape and I've got blood and urine soaked rags everywhere.  He's like a new puppy - dripping bloody urine all over the floors.  Thank goodness we have all hardwood floors!  I have to add that I'm so very grateful for the support I'm getting.  The surgeon's nurse has a direct line and is very nice about talking to me whenever we're worried about something and the guys I get Sam's allergy supplies from have spent a lot of time on the phone giving me advice about keeping this place sanitized and disinfected.  (Aller-Caire The Allergy Store 1-800-547-8095)

Last night I was in tears because it took me 25 hours to get Charley's pain medicine prescription filled - problem after problem, long story - and then he didn't want to take it.  So I got him some ibuprofen and he took some baby aspirin.  And the nurse said both of those were wrong - they thin his blood and he won't heal.  So I had to go back to the pharmacy and get acetaminophen.  Charley said, "You aren't taking care of yourself.  You have to take better care of yourself."  So I skipped Sam's last breathing routine and went to bed. 

This morning Charley was mad at me because Sam had a bad night and because he had a LOT of blood everywhere.  It reminded me of something - I kept trying to remember what.  Then I finally remembered.  He reminds me of ME - when I was in labor!!!!  Cranky, scared and easily confused.  Actually he kind of goes back and forth between sort of labor pains and really bad menstrual cramps.  So I got him some of those pads that you put on your belly and they warm up.  This morning the nurse said the blood is from the aspirin yesterday and he should "TAKE THE NARCOTIC."  If he doesn't maybe I will!

But today's a new day and I did get a good night's sleep.  I just have to stay calm and do absolutely NOTHING extra.  (Well, except knit.)  Everyone keeps saying, "I don't know how you do it."  Well, I don't do it very well.   I do it pretty much the way anyone else would do it.  I just do what I can and then hope no one dies.

The catheter comes out next Thursday and then we'll see how incontinent Charley is.  I haven't reminded him that he will continue to be incontinent AFTER they remove the catheter - I don't think he could stand to hear that now.  But it WILL get better as time goes by...

Prostate Surgery

The really important thing to understand, when you are offered DaVinci Prostate surgery, is that when they talk about how simple and easy and almost fun it is - they are talking about the SURGEON'S experience.  THEY have a great time.  Doing this surgery is more fun (for them) than playing Donkey Kong.  What the DON'T tell you is that they blow your stomach up with CO2 so they can see your insides better and THEN they paralyze your bowels so you can't get rid of it.  Recovery is really, really painful.  Then (while your manly man iswhimpering in pain) they tell you that the catheter they have already put inside you will cause bladder cramps which may be mild or excruciating.  "Just expect that".  (Query: Will Midol help?  I went out and purchased some of those menstrual cramp pads that warm up.  Bladder is in the same region as the uterus, maybe the same stuff I used for menstrual cramps will help.  I tried getting him to do childbirth breathing when the pain was really intense, but he couldn't focus.)

  
I brought Charley home late last night.  He was very nervous about coming home.  The pain has been so intense that, if a CIA operative had walked into the room, he would have gladly confessed to killing Lincoln, Kennedy, MLK AND Lennon.

The down side is that this at-home "hospital ward" has no shifts and only one nurse - me.  The upside is that I don't get distracted and I give pain meds on time.  (When I got to the hospital last night at 7:30, I asked around and discovered the last time he'd had meds was 11 am - he was very fretful and not thinking straight because of the pain.)  So Charley is doing much better at home because I'm making him take his pain meds and stool softeners.   Except for bullying him regarding meds, I'm letting him do whatever he feels like doing.  He is going up and down stairs to get what he wants, managing his own catheter and getting himself dressed.  He is also finding out what things hurt and what things he can do.  Sam is better, too.   He didn't get enough treatments the last two days because I was running to and from the hospital and he didn't really like having his parents missing. Those two ladies were not great substitutes as far as he was concerned.  (Personally, I think they were close relatives of angels.)  They kept watching the WRONG shows on HIS tv.  He was polite and charming to them, but once they left he let me know that he wasn't very happy.  A mother's place is in the home, waiting on him. 

So I'm actually doing ok, too.  It is too cold to go outside anyway and we're just focused on healing and knitting.  It was absolutely great to have him home again and I slept really well.  It's cozy and intimate and we're all three really aware of how important we are to each other.

I'm going to put in a PeaPod order later today, so we're okay food wise.  So really we need prayers and peace.  You could add my hearing aides to your prayer list: I have lost them (They HAVE to be here in the house someplace, I just got distracted) And praise: yesterday I hit a really big pot hole which blew out my tire and bent the rim, but I'm okay and I'm driving Charley's car until we can focus on fixing that.  I hit the pot hole right next to a shell gas station and they patched it up enough for me to get home.  There are TWO tire places in our alley! So I will be able to get it fixed without driving it again!

I didn't manage to get all the Christmas presents in the mail yet, but the last few are all boxed up and I'll get to it asap.

Prostate cancer is no big deal??

So Charley has CANCER.  What else can go wrong?

I should probably explain that this has all happened very fast.  

Backstory:

Charley got hepatitis in boot camp almost 40 years ago.  We've always been grateful that was ALL he got since they housed them in a barracks where several men died of meningitis and one of his friends subsequently died of that, too!  But hepatitis is managable.  It apparently lives on forever in the system and we get his liver checked every so often and his doctor worries about him.  We're not sure exactly WHY his doctor worries about him so much.  Once he came into the exam room and announced cheerfully to Charley that his brain tumor was benign!  When Charley told him that he wasn't aware that he HAD a tumor, the doctor looked embarrassed and left the room.  Only to return with a different chart!

But the hepatitis is real.  So the worried doc sent him to a liver specialist and a urologist this year.  Charley procrastinated because he doesn't take this doc very seriously (who would?).  But the urologist felt a lump in his prostate and wanted it checked out.  "It's probably nothing".  The urologist is a very cheerful chap.

So last week, Tuesday I think, we went together to get the biopsy and see the liver guy.  I went along partly because I was scared and partly because I didn't know if Charley would be able to drive home after a prostate biopsy!  The urologist said everything "looked great" but he would call by the end of the week with the lab results.  I thought that was kind of funny.  I think Charley's butt looks great, too.  But I've never has as close a look at it as the urologist...  So it's nice to have my opinion confirmed.  

The liver doc said that he couldn't figure out why we were in his office.  Charley's hepatitis has been dormant for around 40 years and it looks like all that is needed is a blood test every year and possibly an ultra sound to be sure that it is still dormant.  His regular doc can do that.  It doesn't look like his regular doc DID do that, so they took some blood and told us to go home and not worry.  The only caution is that he shouldn't take immuno-suppressants or cortisone or steroids because those would stimulate the hepatitis.  "So," he said several times, "You're okay unless you get cancer or something."  (Ominous music in the background)

So we went home feeling pretty good.  Then the cheerful urologist called us back Wednesday evening and said, "It's cancer.  But don't worry.  We'll take care of it.  Everything will be ok.  Can you come in tomorrow at 4?"

So the cancer, like the hepatitis, is fairly benign.  We could just go another 20 years or so before it really becomes a problem.  In fact, if he were 80 or so, they'd recommend just watching it.  They could leave it where it is and he'd most likely die of something else before the cancer grew enough to be a problem.  However, he is quite young to have this develop and it is still very localized - only about 10% of the tissue samples were cancerous.  So they recommend just removing the prostate and having that be the end of it.  He likes that idea.  I think having dormant cancer on top of dormant hepatitis is just one too many swords of Damocles hanging, you know?

So he's going to have the surgery sometime in mid-December.  That way he can stay home three weeks (Christmas vacation) without inconveniencing the school too much.  They are being audited again this year and the pressure on his department is pretty brutal.

He's seriously considering how the cancer impacts his retirement plans so, after the audit and after the surgery, he's going to look into that.  We're both eager to retire and move to Portland to be near our niece Heidi and hubby Noah.  Oh yeah! and our son Ben and DIL Cher and grandkids Tasha and Tahreq and Zora.  Not to mention other relatives in Seattle, WA and Santa Clara and Salinas, CA.  Portland is even closer to Denver, I think.  But we are not sure how soon we can afford it. 

They told him that the best way to prepare for and recover from surgery is playing his sax and clarinet.  So he's looking forward to that.

What I'm considering is how recovery from surgery is going to impact ME!  I get to spend my Christmas this year making soft foods and changing diapers for the two men in my life! 

Time to recovery so the he can go back to work: 3 - 6 weeks.  Full recovery of urinary functions (not to mention other intimate concerns) can take as long as 3 years!  There's even a remote chance he won't recover fully.  But he's having this robot surgery and the recovery rates are much better with that.  

Everyone says "Oh prostate cancer. No bid deal."  I'm thinking that it's no big deal to those who haven't HAD it!

On the Sam front, we have mostly given up on taking him to school.  The lung doctor has said that it is important for him to sleep when he feels like it and he has felt like sleeping from 4 am to 11 am his entire life.  So I've stopped trying to get him on a normal human schedule.  This means that we are going to another church now, it has a Saturday 5 pm mass and a Spred group.  And it means he mostly doesn't make it to school.  Maybe one day a month or so.  But even then it's mostly for about 2 hours.  On the other hand, his blood levels have remained fairly stable for the last 18 months.  This is due, according to the doctor, entirely to our care and letting him sleep is a major factor in that.

So now you know the news from what Dad used to call "The Hell Hole", Chicago.