Archive for July, 2010

July 31, 2010

7-30-10- Friday

Status: 8.0/10.   For whatever reason didn’t get a good night’s sleep, so felt out of sorts.

Events: Back at Hopkins for a lab check and platelet transfusion.  They want me back tomorrow for another platelet infusion.  Since they let me out with zero white cells (still virtually none) it’ll be a while before things get back to normal.  Getting an IV infusion of antibiotic 3 times a day  until counts are back up.  Taste buds still on the blink, which makes getting calories difficult. 

Comments:  At this stage last time I was still in the hospital, so it explains why I feel so much weaker at home than before.  Hopefully, I’ll get a little stronger each day.  Spending time with the kids – we had dinner all sitting on my bed – that was great.




July 30, 2010


July 29, 2010  Thursday

Status: 8.0/10   Very weak.  Spent most of the day in bed sleeping and taking naps and making up for three weeks of sleep deprivation.   

Events:  My brother Henry has been here the last few days and a great help as always.  He even got a quick lesson from Lisa and was able to do my mid-day dose of IV antibiotics.  I will have to keep taking that three times a day for another week.   Back to Hopkins tomorrow for a lab check.

Comments:  I don’t think I was this weak after the last hospitalization, but with exercise and protein I am sure I will gain my strength back.   Looking forward to feeling as well as I did before I went into the hospital. 



July 29, 2010

7-28-10 Wednesday

Status: 7.5/10.  Discharged late this afternoon (had the bedsheets ready to hang out the window). Weak as the proverbial kitten, ~ 10 lb weight loss, atrophied quads.  It’ll take some time to get back up to snuff.

Events: Lots to tell, but will save that until tomorrow.  Having a nurse come over this evening to teach about IV antibiotic infusion I’ll need for a week. 

Comments: It’s so much better being at home.



July 28, 2010

7-27-10 Tuesday

 (Lisa is filling in the blanks)

A long and tiring day.

Status: 8.0/10.  Another OK night of sleep, which in the hospital means about five uninterrupted hours.  I’ll take it.  

 Events: Began the day with my usual platelet transfusion.  Then the long-awaited endoscopy.  They put me out with a nice dose of Propofol – which is a wonderful anesthetic when used properly, because you don’t wake up drowsy.  (Unfortunately it was not used correctly with Michael Jackson.)  They found nothing obviously wrong, no active bleeding.  So whatever was causing me to bleed has apparently gone away.  I was all prepared to go back to my room when they changed plans on me and I had to head for an ultrasound on my liver, to see how those lesions are doing. That took another hour or so, and by the time I got back to my room more than four hours after I left it, I was exhausted.  Not only that, but I hadn’t eaten all day because I wasn’t allowed any food before the endoscopy. 

 When I finally did get back to my room the nurse noticed that the folks in endoscopy had failed to restart my usual IV medicines after the procedure, which caused one of the lines in my PICC to clot.  So began another round of intervention, including a chest x-ray (luckily portable, they bring the machine to me) to make sure the lines were still situated properly in my arm and chest, then a round of IV medication to unclog the lines.    And so it goes.

 The feeling among my doctors is that I am finally well enough to go home.  So the plan is to kick me out the door on Wednesday.  I think they know that they have little choice – I’m ready to walk out on my own with or without their permission.

 Comments:  We had been led to believe that after I left the hospital I would be going to the IPOP (inpatient/outpatient) clinic,  probably for daily visits.  Now there’s an indication I may be able to become a simple outpatient without the necessity of the trek to Hopkins on a daily basis.  But we’ll find that out for sure tomorrow.  

 I am going home to a house with no power, except that provided by our generator.  We are still one of the many local customers without electricity after the short but powerful storm blew in on Sunday.  Our generator provides lights, TV, some cooking, and computers – but no air conditioning.  I’ll take fans and a little heat over the hospital any day.  Hope to write you next from there.



July 27, 2010

7-26-10 Monday

Status: 8.0/10. Feeling better after a decent night’s sleep. They’re keeping me around for an endoscopy tomorrow. If all goes well, I’m pushing to leave afterwards.

Events: My youngest brother Henry came up to help out, good having him here. Still with zero white cells, anorexia, and loss of taste. Living on Italian ices. Perhaps I’ll transition to dill pickles when I’m home.

Comments: 2 1/2 weeks in the hospital is taking a psychological toll – boredom, routines, effects of too many meds. Really think it’s time to go.



July 25, 2010

7-25-10 Sunday

I appreciate all the comments while I haven’t been feeling so great. 

Status:  8.0/10.  Feeling better as I get further out from the chemotherapy.  Multiple medication changes in anticipation of an endoscopy tomorrow or Tuesday,  and to put me on a schedule for outpatient visits, rather than inpatient.    

Events:   I got another good night of sleep but still slept part of the day away.  Trying to regain my strength.  Sat up in the chair to read the newspapers, and then Lisa and my nurse took me for one lap around the ward.

Still not eating much,  and only liquids when I do eat.  I had a hankering for an Italian ice from  Baltimore’s inner harbor,  so Lisa headed out  in what turned into a thunderstorm to get it for me. 

My attending for the last two weeks is rotating off and I will have a new doctor starting tomorrow.  Hopefully our acquaintance will be brief. 

Comments:  This hospitalization has been much longer than anticipated and I am desperate to go home.   I hope to write to you from there soon.



July 24, 2010

7-24-10 Saturday

(Ghost Written once more.)

Status:  8.0/10. Steady as she goes.  Got a better night’s sleep last evening,  but still very tired as you might expect.   Platelet transfusion waited until the morning, so they obviously knew I was serious about refusing one in the middle of the night. 

Events:   Lisa and the nurse nagged me so much to get out of bed, that I finally got up to walk to quiet them down.  Did three laps around the ward, despite weak quad muscles.  Then sat in a chair for a while.  As anyone who has gone through something like this knows, even that takes an enormous amount of energy to pull off.

Appetite remains nil – and nothing tastes good.   I will clearly have to go on the pickle diet again when I get home to get my taste buds up and running. 

Dr. Rick Jones, the head of transplant at Johns Hopkins came in to meet us.  He’s been following my case from the get go, but we had not had a chance to meet him in person until today.  We had an interesting chat about bone marrow transplant.  He likened the procedure to mowing down a dandelion.  In about half the cases you get the root too – but in half you don’t and that dandelion (leukemia) grows up again.  So he says the protocol now is to continue maintenance therapy of some sort after transplant (just what drug therapy depends on the characteristics of your leukemia) to increase the chances of a permanent remission. 

Today was all about resting and taking it easy with everyone’s expectation that I would go home tomorrow.  The problem is, that message was not communicated to my GI tract.  I had another GI bleed.  They’ve decided they need to do a scope to see what’s going on.  Our attending will see if that can happen tomorrow, but more likely on Monday.  So my hope of sleeping in my own bed is still just that – a hope.

Comments:  Lisa has had great help this weekend from friends handling the kids so she can be up here with me.  And my brother Hank flies in tomorrow to help out once again.  It really does take a village. Thanks so much for being part of ours.



July 24, 2010

7-23-2010 Friday

(Ghost Writer Lisa again)

Status:  8.0/10. Yes, you saw that right.  We’ve moved up to an 8.  Although it really is more about the lack of feeling just totally awful,  as opposed to actually feeling good.  I am beyond exhausted because once again they woke up at 1AM for a platelet transfusion.   I have informed the head nurse (who is really a wonderful woman) that I will now refuse any transfusions overnight.  I hope they have gotten the message.   They gave me platelets at 7PM tonight – so that should hold me until the morning.

Events:   Our oncologist and transplant doctor Doug Smith stopped in this morning to say hello.  He says I’ll go home,  heal, and regain all my strength before we move to the next step.  He and I both agreed that,  as horrible as this consolidation round has been,  it has surely sliced and diced any remaining leukemia cells to nothing.  That is a good thing as we head into transplant. 

Also today they have been changing my antibiotics around and reducing the amount of anti-fungal medicine.  This is all an attempt to get me on a simpler medicine regime to allow easier treatment at the IPOP (inpatient/outpatient) clinic,  where I will be seen on a daily basis once I go home.

And speaking of home – the hope now is for a Sunday release if nothing major comes up before then – but I’ll believe it when they wheel me out the door.

Comments:   Ethan came home this morning from a month at sleep-away camp.  I can’t wait to see him.  As well as Rachel, since I have not seen her since she visited me the first weekend in the hospital. 

A great weekend to all.



July 22, 2010

7-22-2010 Thursday

(Composed by Lisa – so no medical education tonight – and all medical errors are hers!)

Status:  7.0/10. As noted last night, blood cultures came back positive for gram-negative bacilli.  They have now further refined that and determined that I am positive for E. coli.   This is not the deadly E. coli 0157 associated with food-borne illness, but the E. coli commonly found in your gut.  That said, the doctor told me the bacteria that is causing me problems has survived all the antibiotics they’ve given me so far,  so the tougher,  more resistant E. coli is left.   They’ve changed my antibiotic to Ertapenem, which they think will have a good shot of taking it out.  And of course,  my white cells are still pretty much zero,   so I can’t fight the infection on my own. 

Events:   Spent most of the day sleeping.   I am just totally wiped out.  Vaguely remember visits from an ID doctor,  and a women who comes by to see Jewish patients.   

  One small bit of good news – they finally took me off the heart and blood pressure monitor this afternoon.    With that machine,  I had so many wires attached to my chest that I couldn’t move.   A physical therapist, who came to see me this morning,  wanted to take a walk – but we quickly realized that was impossible.  So we walked a bit beside the bed before giving up.

  No fever today,  but felt nauseated and chilled in the early evening.   Tried to warm up with mounds of blankets and heat packs.  When that didn’t work, and the hard shaking began (rigors) I asked for some morphine again.  This time Lisa will make sure I don’t try to get up. 

Comments:    Thank you so much for all the great support on the blog and on the home front.   The doctors say I am getting better.    There are moments when I feel it too.



July 21, 2010

7-21-2010 Wednesday

Status:  7.5/10. Blood cultures came back positive for gram-negative bacilli.  The condition, of having these types of bacteria in your blood is called gram- negative sepsis.  This is not unexpected when your white counts are zero.  The hard shaking chills (rigors) are part of the usual picture,  as is disorientation.  They started broad spectrum antibiotics right after the cultures and I was afebrile by morning. 

Events:   After they gave me morphine and Ativan last night to stop the rigors,  I tried to get out of the bed to go to the bathroom.  Unsteady on my feet,  I started to fall,  Lisa tried to hold me up but all I wanted to do was get to the ground to prevent any injury.  You can tell patients all you want about not getting out of bed by themselves,  but when they’re stuporous they cannot make rational decisions.   In talking to the charge nurse,  who studied falls over the last several years,  almost all of them involved patients attempting to get up to go to the bathroom. 

In order to make sure my Hickman catheter,  laying vulnerable to bacterial contamination in my blood stream,  would not cause problems if it were contaminated, they removed it today.   The physician’s assistant, who was to remove it,  said I would just feel a pinch,  although he’d have to use brute force.

He was wrong about the pinch.  He was right about the brute force.  They replaced it in the other arm with a PICC line(Peripherally Inserted Central Line Catheter).  It took them several tries to get it in the right position,  but it is now my venous access for all drugs and transfusions. 

Comments:  When old microbiologists looked at bacteria through their microscopes they would stain them in such a way that some stained purple and some stained pink.  It was Dr. Gram who perfected this technique,  and allowed physicians to divide bacteria into those that took the purple stain (gram-positive) and those that did not and remained gram-negative (pink).  They could also see if they were shaped like rods (bacilli) or tiny little circles (cocci).  A good proportion of the bacteria in your GI tract is gram-negative rods,  and consequently most women’s urinary tract infections are caused by these same organisms (such as E. coli). Your GI tract is releasing these bacteria into your bloodstream all the time but with adequate white cells it is not an issue.  If left untreated,   this bacteremia can lead to septic shock and death.  They will keep me on antibiotics until my white cells return.   

Good news today,  reports are that the liver lesions are shrinking with the anti-fungal treatment. 

Although I have been through a lot,  I am feeling better.   Hoping to get out of here by the weekend barring any further complications.