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

Advertisements

15 Responses to “”

  1. Ande Levinson Mendelson Says:

    Remember me? Have not seen you in years, but I have been keeping up with you. My thoughts and prayers are with you everyday. You are truly an amazing person. Just feel better…..xxoo Andie

  2. wendy Says:

    over a life time of varies ails and injury, I have come to accept that at times it’s the smallest of things that drag us down and can bring us to our knees. Walking the breast cancer 3 day in San Diego, I was amazed at the stories shared from survivors, or families of those who didn’t make it. And through it all the things that create the most pain for almost all of us walking were those damn blisters and cramps. Such little things those blisters, but they could make you cry out in pain and make you think about wanting to sit it out and just up the race. But we all were plugging along because we all realized that that was a small price to pay for those who had to walk the struggle of cancer and it’s treatments.

    I wish you a blister… not that damn cancer and it’s treatments

  3. Tom Linden Says:

    Bruce, I’m glad you’re continuing to hound those doctors and nurses. Doing your own epidemiologic study is a good idea. I hope you find the answer to what’s making you have those bouts of nausea which sound very uncomfortable and irritating. I’m thinking of you every day and hope that you get home soon.

  4. Art Ulene Says:

    Bruce…. I sent you a copy of “Cutting For Stone”, a remarkable novel by an extremely talented physician-writer. The plot is breath-takingly unique… the writing extraordinary…. and insights into medicine–and life–stunningly clear. One particular sentance from the book comes to mind today… written to reflect the thoughts of the principal character (also a doctor) at a time when he was in the hospital…. as a patient: “Now that I was a patient, my curse was that I knew too much.”

    It sounds like you have turned that curse into a blessing, but I do hope you’ll give yourself some time, also, to be “just a patient”.

    Which brings to mind another episode in the book, which takes place during Surgical Grand Rounds. “What treatment in an emergency is administered by ear?” The answer: “Words of comfort.”

    I wish you comfort, my friend. We send our love….. Art

  5. Sharon McDonnell Says:

    Of all the ways to be sick nausea is by far the worst. Lisa is being generous offering the term “art” to all that is going on. Much is known and has been learned but it never seems it is the answers to our most pressing questions.
    May your stomach give you solace.

    ps…bactrim and most antibiotics gave me nausea big time

  6. Bill Israel Says:

    Dear Bruce and Lisa:

    I take great solace in your asking for the data, Bruce — and I hope you chew ’em up. There’s great power in moving from feeling crummy to feeling angry. I empathize with your nausea. I have a hard time with boats, let alone high seas. I wish you feeling well enough to take the charts apart and put ’em back together — with an education for some physicians they may never forget. Nor will those of us in your blog audience ever forget the two of you in action here — your great demonstration of care for each other, determination to push through, and the grace to share it with the rest of us at long distance.

    Love,

    Bill and Eileen

  7. Frank Says:

    Bruce – last night I couldn’t sleep and found myself reading your posts on how ‘they’ are giving you medicine that knocks you out. I’m now on a train to Bristol, an Amtrak, and a nice reminder of you and Lisa. It’s a sunny day albeit one I won’t see much of once my five hour conference on opening our APIs starts. My world is so much different than yours and yet here we are sharing stories. Getting a few 7.0 days in a row sounds awful but your dedication to the blog, your stories, and your expressions of love are, and remain, inspiring. Hang in there, we are thinking of you every day. Much love.

  8. Susan Hayes Says:

    Hi Bruce — keep giving the hospital staff hell. It sounds like you are teaching them a thing or two, as you always did with us. I am reading your blog and sending love and prayers from NYC. Hugs.

  9. Warren Says:

    I trust that by this weekend, you will start feeling better and be on an upward path from there.

  10. Judie Davidson Says:

    Nausea makes time seem interminable as I recall from “morning sickness” that lasted all day long for the first 3 months of pregnancy. I hope you are feeling better very soon and certainly before 3 months. I am cycling a lot and thinking of you always when I wash my hands…especially my thumbs.

  11. Bill Schaffner Says:

    Hi Bruce:

    Sorry that you are feeling so crummy and sick to your stomach – hope that your liquid diet soon will be able to include a robust California cabernet!

    Despite feeling yucch, you’re still a great teacher. Here’s your quote from a couple of days ago, “…fever last night – so I wasn’t feeling so hot in the morning”. So subtle! I almost missed that allusion to diurnal temperature variation. You’re amazing!

    Just returned from a quick in-and-out to Scottsdale, AZ and the meeting of the National Influenza Vaccine Summit. I did get in and out of AZ without anyone asking for my papers – I was standing very tall and trying to look very Swiss (my mother’s gene pool). Seems to have worked.

    The meeting would have had you grinding your teeth. Imagine a room full of about 350 influenza vaccine enthusiasts (local, state and federal public health; manufacturers; distributors; etc). The first day’s program was entirely speakers (mostly feds) reviewing the previous flu season – presenting nary a new concept. Over half the audience had often given essentially those same talks in their own communities. And some of the speakers were dull, dull, dull (reminds me of the older lady that complains, “The food here is not very good”. Her friend responds, “Yes, and such small portions”). Anyhow, things got a bit more lively on the second day when there were reports from the field – it always pays to listen to the folks whose responsibility is to get the job done. Several were astute observers who had a thoughtful, nuanced sense of what went on from week to week during last season’s ever-changing environment and how things might be improved in the future. Lots of discussion about communication, changing public health messages over time and the central role of the media. For me, this session was an antidote to the first and reinforced my longstanding notion that there is a lot of altruistic talent devoted to public health across the country.

    Sadly, I had to leave Scottsdale without visiting Frank Lloyd Wright’s studio, Taliesin West. One of Wright’s architectural principles was harmony with nature – I’m hoping that you will be in harmony with nature once again very soon!

    We’re thinking of you and your family.

    Love,

    Bill

  12. joel steinberg Says:

    Sometimes things like CSF protein, degree of nausea, etc. bounce around for no obvious reasons. And speculation only gets everyone into a dither. Better days are around the corner. We send along our best wishes. Joel and Margaret S.

  13. Ron Cushey Says:

    Hi Bruce – we are following your journey and wish you all the best. Here’s to Dr Judy’s proclamation of you going home soon! Having been in the hospital recently, it certainly is amazing how one has to take control over their own destiny – and fortunate you have the knowledge of doing so in such an important situation. Please take each day as they come and enjoy the good ones, and get through the not so good ones as best possible.

    We are sending many thoughts and love from the west coast!

    Love,
    The Cusheys

  14. Hopie Says:

    Your co-conspirators in your blog commentors blow me away!
    What wonderful friends you have gatherd since you left home!

  15. Acevedo Says:

    You have one full day (24 hours) to spend in Las Vegas. Whats your itinerary?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


%d bloggers like this: