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

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25 Responses to “”

  1. Jill Stewart Says:

    I’m loving the number 9 and hating the story from yesterday. You are so eloquent, but rightly angry. Keep telling the story and your voice will carry. Thanks for the regular updates and inspiration. Godspeed white cells!! Love, Jill

  2. Art Ulene Says:

    Bruce….. You ought to be sending a copy of these messages to U.S. News and World Report…. to tell them how full of shit they are. It infuriates me to see how they are treating you. And just imagine what kind of treatment the others are getting…. those who don’t know enough to recognize what’s wrong and aren’t strong enough to fight back. Start writing that op-ed peice…..please. In the meantime, just get your goddam white count up and get your ass out of there….. Art

  3. Lewis Lefkowitz Says:

    Roll over Franz Kafka.

  4. Donna Hill Howes Says:

    Dear God, Bruce….I’m sometimes ashamed of my profession of Nursing….your story is simply unbelievable….and your anger healthy and justified. I agree with Art…..get the hell out of there, asap!! And please tell me how they continue to get the #1 hospital rating year over year with stories like yours….or is it that no one speaks up!! SPEAK UP….loud and clear. I vote for the op-ed!!!
    Sending you love, and plenty of it, dear friend….soldier on….the future is bright and those white cells will be your ticket home.
    XO
    Donna

  5. Peggie Neill Says:

    Bruce –
    I am loving, and detesting, your response(s).
    Loving those WBCs coming up and knowing that you are outta there, the hell with everything else.
    Detesting the experiences you describe – how did it come to this for the profession we so love – determined to take care of you first and fueled by your eloquence, the system next.
    Love,
    Peggie
    PS Had accidentally hit the dial for radio channels in my car in my rush to get to my son’s Mock Trial episode; son, daughter and husband pile into car after Mock Trial, and after a few moments, the shocked question – “Mom, when did YOU start listening to Lady Gaga??!!” Gots to keep them guessing all the time….. 🙂 Same for you, Champ.

  6. Wendy Yaross Says:

    Amazing how the most impersonal treatment is accorded to those who need the most personal care. Just keep that righteous anger fueling you when you’re not treated right, but most of all, focus on the hope and pleasure of those increasing white blood cells, Bruce. We’re cheering you on!
    Love, Wendy and Daniel

  7. Lynn Oliver Says:

    Stay angry and give them hell. This happens ALL THE TIME, EVERYWHERE. It is absolutely inexcusable. (I remember Sam being parked, febrile with an empyema, under a vent that blew icy air on him while he waited for a CT, and waited, and waited…)

    We have a “white coat ceremony” for our 2nd year medical students in a a couple weeks (to celebrate their transition from the classroom years to the clinical years). The faculty were asked to contribute “words of wisdom” for a card to be placed in the pockets of their white coats. My thought: “Whenever you do something TO a patient, ask yourself if you are doing something FOR them.”

    You’ve made me even more inspired.

    When did medicine become a business and an institution?

    The most important thing though is that you have enough WBCs to be mad.

  8. Hopie Says:

    Whoopee for getting better, despite the intolerable treatment yesterday.
    Nine to five, Dolly wouldn’t like that either.
    I love you, Momma

  9. wendy Says:

    Bruce= This is my only suggestion…. take that anger and let it out!!!!!!!!….do not and I mean this truly… from the bottom of my clinical social worker heart…. do not hold onto it…..let it out loud and clear..cry/ scream / cuss and whatever else works for you… hit the pillow, spit… you name it… it’s the held onto anger that will make you sick “er” Anger is toxic and that chemotherapy is toxic enough all by itself…..Feeling helpless is a leading cause of depression and that’s not where we want you to go.. so while you can’t change the system from where you are, you can accept that death is something we all have to accept at some point in our life (which you already said you have dealt with)… but knowing that you have a greater purpose…and I think we all have commented on what we think is your greater purpose is… that is the will and determination and the source of all GODLY things… God helps those who help themselves and others… if you choose to talk to GOD… tell him/her that you have some things to do to better man and woman kind

    Then get home soon and do just that… after a little r & r… that is..

    love your lil social worker and spiritual sister

    know I’m here for a purpose… to push toward that direction.. let go and let god…

  10. Eileen Breslin Says:

    Dear Bruce,
    What a journey and not just to radiology. You are not alone in these experiences, but you alone have the will, the rage and the talent to let the non system know what needs to happen. Let it all out. Use your pen. So imagine the WBC’s taking hold and taking charge. You have army of us who will ensure this story is told and your voice is heard.
    Rest for you and Lisa is first order of business. Bill and I will be in DC area the 24th of July and hope you are home so we may deliver sunshine and hugs…
    ps Ms Nightingale is rolling over in her grave. love Eileen

  11. darya Says:

    Dear Bruce,
    I was sad and angry to read how things went during your radio procedure. You have every right to be upset. Sometimes those who work in the hospitals get so desensitized, they forget the the very people they are there to help.
    On another note, perhaps more positive, I have just returned from a trip where a childhood school friend is under treatment for stage 4 cancer. I dont know if you believe in Reiki, but evidently she had found a Reiki master to help and was swearing by its healing powers. I should know better than to mention such things to a Doctor 🙂 But if you believe in good energy (and I do), then perhaps this can help?
    Also, I prayed for you in a very very special church (chapelle de la medaille miraculeuse) and I have brought back a little medalion which I will send to you though Lisa.
    Hope today is a better day for you Bruce. We look forward to seeing you very soon. I will look for you at the pool which is opening soon 🙂

    by the way, did you ever think, an Iranian born muslim, could be a Reiki believing, church praying optimist?????
    Much love,
    Darya

  12. courtney Says:

    hi bruce,

    happy for the 9, but sad that you weren’t treated w/ the compassion that patients need/want/deserve. i’m sorry you had to go through that.

    on a lighter note, hope you and henry are having fun spending time together. for some reason, i’m imagining ipads galore in your hospital room. =)

    hoping you have a better day today.
    courtney =)

  13. Debbie Blum Says:

    Dear Bruce,

    How good it is that your energy is coming back. I can so relate to your stream of frustrations. Reading your blog brings back a lot of buried memories, both good and bad, from my AML and stem cell transplant hospitalizations.

    On a happier subject, glad to hear that your counts are coming up so home should not be far behind. Here’s a positive hospital story: After 5 weeks of hospitalization and with recovering counts, I developed a BIG case of hospitalitis. The doctors, nurses, and social worker all put their heads together after morning rounds and came up with a plan to get me out of the hospital pronto (I seem to remember it was that very afternoon), even though I still needed a few more days of IV antibiotics for VRE (home infusion was the answer).

    Hope each day gets easier. Channeling positive thoughts your way….

    Debbie

  14. Henry Miller Says:

    Bruce,

    When frustration with the hospital and its personnel builds, try to focus on HOME — on its joys, comforts and beauty, and the likelihood that you’ll be there soon.

    Thinking warm and positive thoughts,

    Henry

  15. Leslie and Don Singman and Family Says:

    Bruce,
    So glad to hear about the better white cell counts! So now my plans to visit you in Baltimore on Memorial Day weekend will probably change, and I will have a much shorter drive down 270 to your house in only 22 minutes 🙂 . (Lisa and I have timed it since I moved 8 years ago)

    Wishing you a speedy way out of there very soon.

    Leslie

  16. Nancy Bandell Says:

    I agree with Art Ulene, please start writing your op-ed piece. And, I agree with Winston Churchill; “Kites rise highest against the wind – not with it.”; “If you are going through hell, keep going.” And, “Never, never, never give up.” Take care my dear friend. Love, Nancy

  17. wendy Says:

    B- I had to add one more comment re: Darya’s Reiki story. Great option. I just told my story yesterday to a friend when we were discussing you and healing options with prayers etc..Hope this inspires you to consider it Reiki as an option…A few years ago I was at a self realization center in San Diego -on a friday around susnset to see the view. I made a very sarcastic- flip statement and tripped as I said it out loud, breaking my ankle. ( I said- that was God’s way of punishing me for what I said). As I was rolling around on the ground in excruciating pain, a guy identifying himself as a Reiki master was kneeling at my feet and asked if he could do reiki on my ankle for me. I’d heard of it but had no prior experience. I said sure. After what felt like a really long time, I decided I needed to get it seen at the hosptial. I thanked hiim and hopped/ was half carried to the car and went to get it X-rayed. Then was sent to urgent care and given cruthces, wrapped in that blow up thingie (no cast) and told to see the ortho Dr a few days later cause it was the weekend. When the Dr looked at the X-ray, he kept saying HUM. Looked at me and my medical records -stared back at the Xray, said HUM. Finally I said- What? He said, this doesn’t make sense, given where and what happened and your medical records, you should have shattered that ankle. It just doesn’t make sense. TO this day, I wish I had let the Reiki Master continue doing his thing until it was totally healed. I do give the reiki master all the credit and BELIEVE it was what made the difference. How else can we account for the Dr’s “HUM- it should have been totally shattered, I don’t understand” And even if you didn’t believe- what could it hurt to try it. With reiki- it’s not your belief that does the healing..anyhow… GO Reiki…thanks Darya for reminding me to support this option

  18. joel steinberg Says:

    A nightmare within a nightmare. A big change in perspective when a WBC count of 400 is hailed as GOOD news. May you get out of there soon. Joel and Margaret S.

  19. Greta & Michael Says:

    Looks like things can only get better! It sounds like home is just around the corner! XO

  20. Molly Robbins Says:

    Bruce: Your blog does so many things–it’s informative, educational, entertaining–and it enables the rest of us to worry a little bit less about you because we can learn what’s happening on a daily basis. I’m a positive person and my first inclination is to echo what so many others have already said. I won’t go there because they have expressed themselves more eloquently than I ever could. I will simply say, “Ditto.” However, I can speak to the issue of not tasting. Since I can’t smell anything my ability to taste food is limited. You mention that your sense of taste is currently non-existent so my suggestion is to concentrate on textures. Eating is important to your recovery and textures do make food consumption more interesting. People sometimes ask if you’re a salt or a sweet person. I would also ask if you’re a chewy or a crunchy person. Well. . .?? –Molly xoxo

  21. wilson russell Says:

    Bruce, Marcia and I read your blog daily. It is agonizing for us as you recount the pain and suffering you have endured. I little thought that the nasty diseases andcomplications we witnessed in med school and training would ever apply to any of us. As to parts of your nursing and radiology care, if I didn’t know better I would think you are at the Nashville VA.
    You have shown incredible courage and determination as you have through all of this. Lisa and your fine children, too, have been inspirational in their love and support.
    Despite facing the threat of acute leukemia and suffering the ravages of therapy, you’re still the Bruce we all know and love—energetic as always, continuing to be the great teacher, philosopher, and entertainer.
    The latest news is very good, suggesting to me the beginning of a complete recovery. Hope you’ll be home soon. Wilson

  22. William Schaffner Says:

    Bruce,
    I was elated to learn that your neuts are up to 400. Don’t break out the champagne just yet, but you can put the bottles on ice. As they say, there is light at the end of the tunnel and it’s not a train coming in your direction. Also delighted at the consequence-your antibiotics are being discontinued step-wise. Another adage: the fewer the antibiotics, the better (incidentally, just the reverse is true for vaccines).

    And then you had to go ahead and spoil my mini-celebration with your radiologic ordeal. Sadly, every word rang true and reminded me (if I needed reminding) that we have some work to do before patient-centered care (hey, what other kind of care should there be??) is more than a slogan.

    In the meantime, beyond your four walls, summer has started to arrive. Nashville has had a couple of those suddenly 90 degree days (with accompanying humidity). Lois is up in Massachusetts with relatives and temperatures hit 90 there yesterday, too. New Englanders seem stunned, she said. She’s staying in an historic inn in Groton, but not all the public rooms are air conditioned. She’s scurrying about to find fan because she’s hosting a local group that is in the process of restoring a one-room schoolhouse. Although living in Nashville, Lois is the sparkplug behind this. Her father attended school in that schoolhouse and her grandfather was a member of the town’s Historical Commission; she’s been made an Honorary Member. A lot of work gets done by the locals during the month before her annual or semi-annual visits. She undergoes a personality transformation into “Lois the Project Manager” and it’s amazing to watch the local guys get their acts together.

    So, just as soon as your WBC increases a bit more, summer is out there waiting to welcome you. Rest assured, however, that Lois will not press you into working on her favorite little red schoolhouse.

    Keep fighting the good fight!

    Bill

  23. winnie Says:

    Dear Bruce and Lisa I am sorry that you were exposed to what I considered abuse.
    All i hope that you are correct about going home soon.
    As you know we all hope for a speedy recovery.
    With love to both of you.
    winnie

  24. Judi Golding-Baker Says:

    My Dear Bruce

    I’m a great believer in the words of Edmund Burke — and love the fact that you put his words into action!

    Sending you hugs of strength and courage to keep up the good fight.

    Love you,
    Judi

  25. clarissa K. Wittenberg Says:

    So shocked to hear from Jean Baum that you were ill. I am sending you strong, but careful hugs and all my best wishes. I am wishing you great courage. I will mark your blog and follow it. XOXO

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