Archive for May, 2010

May 28, 2010

5-27-10

Status: 9.0/10  

I am home.  It feels wonderful.  As per the advice of good friend Dr. Peggy Neill I am going to take a break from the blog and enjoy the long weekend with my family.  I will report back to you next week on what leaving the hospital was like.  Enjoy the long holiday weekend.

Love

-Bruce

May 27, 2010

5-26-10

Status:  9.0/10.  Best day yet. The reason – the docs are sending me home tomorrow morning!   My neutrophil count is over 500 and rising, so I have a functioning and protective immune system.  They’ve taken me off all IV drugs.  And I’ll soon walk through my front door after 40 days here.   Much more in the medical saga, but we’ll concentrate on the good news for now.  Food still tastes bland, but I hope that changes soon, so I can get some protein in me.

Can’t say enough for what all the support I’ve had – undoubtedly it has been fundamental in getting me to this point.

 My blog will continue as I let you know daily what’s happening.  Thanks for being there for me.

Love,

-B

May 26, 2010

5-25-10

Lisa either brings over or has sent over dozens of cards each day, which is exactly what I need.  So many good thoughts.

Status: 9.0/10.  A good day.  My neutrophil count is up to 400, and I can tell the difference.  It might bounce up and down over the next few days, but it’s definitely heading in the right direction – one that may get me heading home to sleep in my own bed soon.

Events:  Because of my increased counts they are discontinuing most of my antibiotics and other medications – that alone will help my body recover.  My IV pole no longer looks like some cell tower.  Still have not regained my taste sensation; my smell seems unaltered, but everything tastes the same bland paste.  Impossible to have an appetite with that.

Comments: As to yesterday’s disastrous episode in radiology, I’ve been told that I’m letting myself get angry at things I cannot change, and wasting my time when I should be spending it utilizing my energy for different purposes.  Well, for those of you who know me well, that’s not how I operate.  “All that is required for evil to triumph is for good men to do nothing.” – Edmund Burke

The shortened scenario applies to every Radiology Dept I have ever seen, been associated with, or passed through).  I was sent down for a fluoroscopically-directed lumbar puncture (since previous attempts proved difficult).  Traveling face up on a gurney with an N-95 mask over my face, I was meandered through the hallways and basement corridors by a jolly transport technician who seemed to know everyone in the hospital and made sure he carried on a loud conversation with each one.  With me, not a word.  Not, “You, OK?”, “Doing all right?”, “We’ll have you there in just a minute.”

We arrive at Radiology, and without so much as a, “how do you do,” I am parked against a wall with no hand over, no checkout, no notification that their patient has arrived.  I lay there for 2 hours, on my back, trying to breathe through a mask, whose main purpose is to let very little through.  Trying to contact anyone is fruitless. And I am feeling a little fearful, confused, angry, and panicky.

Finally one of the radiology techs comes out, asks my name, and says that they have a pediatric emergency and won’t be able to get to me for another hour.  Would I like to go back to my room?  As I eagerly plead yes, another transport person attempts to tell me why I don’t want to do that – it’s just an hour, it’s bumpy going back (translation – I’m not thinking about your comfort, I just don’t want to roll another patient back upstairs).

Long story, short, I finally make it back upstairs, they call be back in an hour, but it takes transport another hour to get me, the radiology schedule is getting backed up, the radiology tech ain’t happy (neither am I), and what started as a 20 minute procedure at 9: 30 AM, ends up at 5 PM.

Good friend and Dean of Nursing, Eileen Breslin, speaks about patient-centered care.  There was no patient in this case, no care, and I was certainly not the center of the issue.  I was a widget in a machine.  And whether my anger about being in a hospital, or being struck by this disease, or that I was having a bad day – may or may not be appropriate – the point is that this is not the way to take care of other human beings – it’s not the profession I entered into, and as Wilford Brimley shouted in Absent Malice, “And dammit, it’s just not right!

May you find people who will treat you with compassion.

Love,

-Bruce

May 25, 2010

5-24-10

Status:  8.0/10.  Could have been higher except for the needless mismanagement of a simple procedure.

Events:  Mondays are busy days with lots of procedures.  Today’s big event was getting that LP done, so it was decided to do it under fluoroscopy control.   Much too much to tell tonight.  Will relate everything in the 2nd reel tomorrow.

Love,

-B

May 24, 2010

5-23-10

Your primary source reporting.  Let me reaffirm what Lisa had said about your wonderful comments.  While I can’t respond to each one, I do read each one (most more than once.)

Status:  8.0/10.  Busy exchanging one set of symptoms for another.  We sat down with the pharmacist and Resident and went over a detailed Excel spreadsheet with timing and duration of all my drugs.  The major issue had been nausea and vomiting, but only subdued with enough anti-nausea drugs that left me stuporous.  At one point, a nurse who I had never seen before came into my pitch black room at 4 AM and asked me if the Zosyn (big-time IV antibiotic) should be given over 30 min or 45 min!  Was she asking for a consult?  Giving me a mini-mental status exam?  Or asking for a half-grapefruit in the puss?  Hint:  if a nurse sings to herself or hums a song while attending to a sick and sleep-needy patient, fire her on the spot.  No questions asked.  Your place in heaven has been secured.

   Spent most the day without nausea, but making quick trips to the bathroom.  It’s amazing and quite compassionate that your GI tract generally only insults you one end at a time.  Occasionally you can suffer two at once.  I remember having that experience during a bout of Salmonella.  I remember it … because some things you just don’t forget. 

Events:  Weekends are calmer – they tend not to schedule tests.  After being here 5 weeks, I can say with some confidence that the nursing staff is not up to par with the weekday shifts.  And please don’t even get me started with the person who answers your call button.

  The kids were up for a short time, Rachel after an exciting year-end school visit to NYC.  Sister-in-law Wendy Stark flew ‘cross country to help out.  And had a surprise visit from Ruth and Ken Zwick with an authentic DVD of Hemo the Magnificient.  Never thought I’d know this many people for more than 40 years!

 Comments:  I await a C. difficile culture before they can put me on Imodium.  Swear if I can get out of here, I’m going to be their national spokesperson.  Docs keep hinting that my neutrophils should be coming up.  That would solve a lot of problems, and decrease my drugs by half!  Looking forward to this being my good week.

Love

-Bruce

May 23, 2010

5-22-10

Guest author Lisa again

Status:  7.5/10.  Steady as she goes.

Events:  Weekends are quiet.  Not many folks here to poke and prod you all day long.  I like that. Slept a lot of the day away – that Ativan sure puts me under.  Declined it this afternoon to see how I do without it. 

Small Victories: Ate two helpings of snow cones with my favorite cherry flavor.  Ate some peanut butter crackers.  First food in many days.  

Good Advice:  After many folks suggested acupressure armbands for nausea, Lisa bought them and snapped them on my wrists this afternoon.  Maybe that’s why I can eat?  Who knows, but they can’t hurt.

Recalibrating:  My blood pressure is low today so they figure I may be dehydrated.  (Side comment: didn’t Lisa raise that issue on Friday?)  They are now upping my IV fluids to see if that helps.

Setting the Record Straight:  Yesterday I mentioned I am taking 13 medications.  The nurses had the pharmacist print out my medication list and it turns out I am actually on 18 medications in all.   That must be some kind of record. 

Comments:  I finally felt well enough today to catch up on many of the blog comments.  They are just wonderful.  (Art – when are you arriving for my LP?)  Please understand if I don’t have the energy to respond to them – but know that I am invigorated by your humor, thoughts, well wishes and sage words of wisdom.

Happy Weekend.

Love

-Bruce

May 22, 2010

5-21-10

This is a joint Lisa-Bruce production.

Status:  7.5/10.  Inching upward just slightly.

Events:  Started the day feeling nauseated again.  The doctors looked over my thirteen (yes 13) different medicines to try to figure out what is making my stomach feel so out-of-sorts.  They’re still voting for the antibiotic Bactrim.  So they’ve stopped the IV Bactrim and I have to take two gigantic pills every 8 hours instead.  We’ll see if that helps.

On the good front, no attempt at an LP today – they’ll do it Monday or Tuesday with fluoroscopy. 

The doctors also assure me and Lisa (mostly Lisa) that it is OK that I am not eating or drinking anything.  All the medicines and some fluids they are pumping into me are ensuring I am not dehydrated.  They claim I’ll feel better by early next week.  I am holding them to that.

Comments:  Social worker Amy Sales came by today to take my emotional pulse.  I told her I’d really like to be out of here. (This is day 34 but who is counting?)  She noticed all the wonderful hats and books and cards that everyone has sent – and told me each hat is a hug, each book is a hug, each card is a hug.  They are hugs from someone who would love to be here to give me one in person. 

 Love to each and everyone of of you for all your hugs.

Bruce

May 21, 2010

5-20-10

Lisa – Guest author once again.

Status: 7.0/10  Still stuck on seven.    

Events:  Felt a little better this morning, but unfortunately it didn’t last long.  I am totally wiped out – which may be because they are giving me so much Ativan for nausea.  The latest plan is to reduce the Ativan a bit to see if we can find that sweet spot between medicating me to numbness and staving off nausea.

Was supposed to have my 5th LP (lumbar puncture) today and boy did the Intern and Fellow try. Let’s just say three attempts later and I was worn out. They just couldn’t seem to tap into the right spot in the spine.   So tomorrow they will try again, this time I hope by using Fluoroscopy and dye.  They inject dye and then use the combinationg of the dye and the medical imaging machine to pinpoint the exact location to put the lumbar puncture needle.  (OK all you doctors out there, you can tell Lisa, not Bruce, is writing this description no doubt.)

Comments:  Bruce and Lisa have no pithy comments tonight – except that once again tomorrow is another day and we will hope it’s a better one.

Good night. Sleep tight to all.

Love

-Bruce

May 20, 2010

5-19-10

Guest author Lisa is again doing the honors for me.

Status: 7.0/10  Still a pretty lousy day.  

Events:  Nausea seems to be the order of the day these days.   The latest theory is that maybe it’s being caused by the new (and 4th ) antibiotic they have put me on, which is Bactrim.  Unfortunately they have to continue the Bactrim until my white cells come back, which they are taking their own sweet time doing.  I had been taking Ativan for nausea, but only on an as needed basis.  The doctor decided they’ll now run the Ativan pretty much round the clock, even though it will make me very sleepy. As she said, “I’m not going anywhere,” – so why not sleep I guess.  They started the drug late this morning.  It may be making a bit of a difference, and I did sleep the day away, but I was still nauseated again this evening.  

My latest LP (from Monday) showed protein levels in the spinal fluid, which had been dropping just as the doctors had hoped, had gone up for some reason.  So the theory is that maybe after all those LP’s they’ve now irritated the area.  The plan now is to do one more LP with chemo infusion tomorrow, Thursday, and then give my aching back and spine a whole week’s rest before they do another.  (Lisa editorial comment:  These doctors seem to have lots of theories but not many hard and fast answers – underscoring for me that much of medicine remains an art, not a science.)

I was able to enjoy one thing today.  The wonderful folks at Norwood School rushed me a DVD of the school musical, in which Rachel had a key part.  I watched part of it on my DVD player, and look forward to seeing the rest.   

Comments:  I have decided to dust off my epidemiologic hat and put it to good use.  I have asked the nurse for a detailed chart on the medicines I am getting and exactly when I am getting them. I am going to try to correlate that with my bouts of nausea to see if I can come up with the answer for what’s causing me to feel so crummy. 

My current attending, Dr. Judy Karp, now goes off the rotation for nine days.  She assured me today that when she gets back, “You’ll be gone.”  I joked, “I hope not!” She laughed and reassured me she meant that I’d be home by then.  From her mouth to…   Well you get the idea.

For now, today was just one of those bad days that I’m entitled to but I certainly hope I can muster a better report in the days ahead.

I remain in awe of all the great wishes and cards and thoughts that are coming our way.  And Lisa is in awe of the amazing help from friends, family and our nanny – all of whom are making life run as smoothly as it can given the circumstances.

Thanks to all.

Love

-Bruce

May 19, 2010

5-18-10

I’m just too tired to write tonight so I’ve asked Lisa to fill in the blanks for me

Status: 7.0/10  A very uneven day.

Events:  Rough night last night with fever, so I wasn’t feeling so hot this morning.  Also felt nauseated most of the day – both in the morning and again in the evening.  I really haven’t eaten anything again, just liquids.  I’m trying to figure out why I’m so sick to my stomach since the major chemo infusions ended over a week ago. The nurse says it may be the chemo they’re giving me twice a week during my LP.  Whatever the cause, it’s making my day lousy.   I did rally for a time and even managed to play a game of chess with Terry.  I was dominating, in total control until (in my weakened state) I made a fatal end game decision, which caused the game to end in a stalemate.  

Also today, Lisa ordered a massage for me, but it wasn’t as good as her foot rubs.

Sick people aren’t all that fun to be around, but the hospital has volunteers who come by to chat with us and offer us a bit of company.  A retired gentleman was my volunteer visitor today.  I really wasn’t up to talking, but luckily he was happy to tell me all about himself and his plans to retire down South.  Social worker Amy Sales also popped her head in.  She’s always a comfort to talk to. 

Comments:   This is part of a string of several days in a row where I really have not felt so good.  I am more than ready for the tide to turn. 

Thanks so much to Terry for being here – it was good to have someone here while I was going through all this.

And thanks to all of you for thinking of us, for your cards, your support and your help.

Love

-Bruce