6-01-10

It’s been a restful and recuperative few days since leaving the hospital.  The time has also given me the chance to read and reread the hundreds of cards and notes I’ve received.  Such good therapy.

Status: 9.25/10.  I feel so much better – physically, and perhaps most importantly, psychologically.  Being home is such a boost – a little shocking at first (much like I would presume a POW feels after being released), but the change in emotional state is remarkable.  I’ve thought about this a good deal over the long weekend, and I realize that I had become “institutionalized” during my long hospital stay.  I had forgotten what the outside world and real life were like.

If you wished to break down someone emotionally, you’d design a program to deprive that person of sleep, regiment his daily existence, restrict his activities, physically restrain him (tie him to an IV pole 24 hours/day), feed him a repetitive and boring diet, and other than an occasional waterboarding … you see where I’m going with this.  I am in no way belittling the efforts of the doctors and nurses who have taken extraordinary care of me and allowed me to be writing this to you from home – I am eternally grateful for what they have given me.  But the system is designed for efficiency and physical outcome – it extracts terrific emotional cost from a patient.  And this trauma is especially injurious when the patient has to make rational decisions about his own care, or to report accurately on his symptoms to aid his health care team.  Is there a way to accomplish the same task of getting a patient well, but incorporating as a main component an emotional- and psychological-sparing regimen as well?  Seems like a goal worth pursuing, doesn’t it?

Events: Went back to Hopkins today for my first outpatient checkup.  Although we had a 9 AM appt for lab work, and a 10 AM appt for vital signs, coordination of appointments, etc., we sat for a few hours because the main laboratory equipment (blood counts, etc.) was on the blink.  And after a long holiday weekend, the place was pretty stacked up anyway.

But the good news is that my neutrophil count (those key fighters of infection) had come up into the normal range!  And my hematocrit and platelets had also increased on their own (my bone marrow is regenerating).

A word about neutrophils since so many have asked.  The three main elements of the blood are the red cells (red because of the hemoglobin and oxygen they carry), the platelets (tiny blood-clotting elements), and the infection-fighting white cells.  Now, the cells aren’t really “white.”  Under the microscope, they appear as clear, transparent, ghostly cells.  But since they aren’t red, we call them white.  In order to see them, we take a blood smear and dip it into a combination of a red and blue stain.  Many if not most of the white cells will show tiny little granules – those are called granulocytes.  A few cells show a faint red color to their granules, a few show a faint blue color, but most stain a purplish combination.  These are the neutrophils – they are “neutral” since they don’t favor blue or red.

 They are the main defense against bacteria, and that’s the reason we put so much stock in them.  Just to give you an idea – each time you brush your teeth you seed your bloodstream with bacteria – if it weren’t for the neutrophils on guard 24 hours a day, mopping up these and all the other little insults, you’d be sick all the time.

Comments:  My appetite is back, although not my full taste as yet.  I plowed through a jar and a half of kosher dill pickles on Friday because it was the only food that had taste!   And I’ve been told to forget all the salads, fresh fruits, and veggies and go for the ice cream and butter.  My task these next few weeks is to gain some weight (lost about 20 lb in the hospital), get back into a regular sleep cycle, and get some exercise (my brother Henry came up from Atlanta and was extraordinarily helpful – including buying and installing an exercise bike in my bedroom).  The seat on the exercise bike is tough on my behind (lost a lot of fat back there).

I go back on Thursday for another LP, and then next Monday for the important bone marrow – the one that will show if I’ve knocked the leukemic cells back on their behinds.  If my bone marrow is regenerating well, and we’ve managed to turn the time machine back to last fall, when no leukemia was detectable (although existed in my body) we have several options to pursue.  And more about that later.

But one last random thought – my blog has been blocked in China.  A father of one of Ethan’s classmates is working over there, and his access is blocked.  Did I use the word “freedom” in one of the notes?

I’m extraordinarily happy to be home, and owe much of that to the support that Lisa and I have been given.  It could have been an extremely difficult time – but all of you made it so much easier.  We cannot thank you enough.

Love,

-Bruce

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15 Responses to “”

  1. Art Ulene Says:

    Welcome home! Thank you for sharing yourself with us. Art

  2. Jill Stewart Says:

    Grinning from ear to ear at this report. Praying for more good news to follow. thanks! Jill

  3. Laurie Samuels Says:

    Bruce,

    It sounds so good to hear you sounding so much better! Continue to bask in the comforts of home… rest and get strong. Much love to you. Laurie

  4. Hopie Says:

    You are just wonderful! So glad I had you!
    Your loving Mom

  5. Judy and Larry Says:

    Bruce
    How wonderful to hear the smile in your voice again, if there is such a thing. We are thrilled to know that you are feeling better. We hope and pray that the worst is behind you and that you continue to beat this horrible disease.
    I spoke to Terry and he said that you enjoyed the chocolate covered pretzels from Dinstuhl’s. Let us know what else you have a taste for. We have tons of great candy to choose from.
    Thank you so much for taking the time to write on your blog and explain what you are going through. You make it so easy to understand. You definitely can teach those doctors and nurses a thing or two and I hope you will. I also hope you will consider writing a book when you are finished with your treatment. I will be first in line to buy it.
    Until the next report….take care and stay well.
    Love, Judy (and Larry)

  6. Donna Hill Howes Says:

    Overjoyed to read your blog, Bruce. I’m keeping you in my daily prayers….and have high hopes that the reports will come back with good news for you.
    Sending you love, and lots of it!
    XO
    Donna

  7. wendy Says:

    wendy Says: for those of you who don’t read backwards to see all the comments…I am posting this to see how many we can get to do a group prayer,….it does work..ya know…

    May 31, 2010 at 3:03 am | Reply
    Thanks to all who have supported Bruce’s journey….I’m his only sister and those who don’t know, the spiritualist /clinical social worker in the family…..I do believe group prayers work… so join me and others and let’s do a group prayer/and if you’d like..pass it on to others who believe in the power of prayer……Bruce was born on 12 /20/ 46.. so how about at 12:20 pm every day we all take a moment in silence or whatever works for you… a prayer or imagery that those ridiculous cancer cells are G-O-N-E and that he is healthy and that he has a life’s purpose and a big mission to accomplish – getting that intrusive and inefficient medical system improved. Let’s join together, there is power in numbers and miracles in the power of prayer

    thanks wendy

  8. wendy Says:

    I went to a pharmaceutical presentation tonight for those who work in the dialysis community. The medical director of a Davita dialysis clinic was presenting “quality of life issues” to address with patients. Given that’s what we social workers address all the time…I thought it would be interesting. If nothing else a free dinner at a local la Jolla restaurant, Roy’s. Yum!

    And as this charming Dr presented , all I could think about was ” Wow, a doctor that had learned about patient rights,care and psychosocial needs.( OK, it wasn’t his presentation-but one provided by the pharmaceutical company). But nonetheless, his side stories were about what he says and does with and to patients. He mentioned the “routine” indoctrination of patients into the regimen that is essential for attending medical care and guidelines/protocol. He ssid and I quote, “we, nephrologist, have about 4 minutes to attend to patients, their charts, prescriptions and needs.” And somewhere in this we need to SEE the PATIENT.

    It’s a sad commentary on the medical society that exists today. But truly- it takes only a minute to give a smile, hold a hand, ask if a hug is needed and let someone who is struggling with a life threatening disease know that you care and they are important.

    I tell my patients when I introduce myself- after the routine clarification of what a clinical social worker does, that I’m their new best friend. And I always tell the story of a patient who asked, would it ever get better. I guaranteed that 6 weeks to 3 months he’d feel much better once he’s gotten good dialysis. He wanted to give up, but I presented a ray of hope. I promised by telling him of others who had gone before him and succeeded. In 3 weeks he was driving himself to treatment and doing much better. He just needed to know that getting better was an option

    Everyone experiencing the trauma that a disease and the medical interventions that go along with helping them, need to know that they are NOT alone in this and that there is a light at the end of the tunnel.

    Hope is a prescription that has been know to cure many. Support is what helps those who struggle remember there is Hope.

    For all the suppor that has been displayed to Bruce – I am grateful. Keep it up… he’s almost there..

  9. Henry Miller Says:

    Bruce,

    Delighted to hear that so much has improved!

    Your discussion of so much hematology reminds me of a funny (funny-odd, not funny ha-ha) story from med school. I was at the Univ. of California, San Diego med school in its early days: the fourth class to enter. They had hired big-time researchers rather than skilled clinicians to head departments and divisions. I was doing lab research in a lab near that of the professor who was the chief of hematology, Mickey Goulian, and I happened to be in his lab using a piece of his equipment when the VA hospital’s hematology resident and a couple of students came in looking for him. The resident held up a slide and said to him, “Dr. Goulian, could you have a look at this blood smear; we’re not sure what it is.” Goulian — the head of hematology, mind you — answered, “I will if you want me to but, frankly. I don’t know much about eukaryotic cells.”

    Isn’t that amazing? (Goulian worked on DNA replication in bacteria and in phage; this was probably his best-known article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC223838/pdf/pnas00152-0193.pdf.)

    Thanks again for all of your wonderful observations and insights.

    Warm regards,

    Henry

  10. joel steinberg Says:

    You are so right. Even home chemotherapy with its restrictions on food, visitors, etc. is like being in prison. Margaret has said more than once, “I just want my life back!” We are glad that you are out of the hospital. Good luck on the next phase(s) of your treatment. Joel and Margaret S.

  11. courtney Says:

    so glad to hear that you’re home and happy…and that you’re able to eat all the ice cream that you want (yum!).

    now i had to ask….have you tried one of those berger cookies yet? (once you go berger, you never go back…LOL.) it takes a good amount of willpower not to wolf down the box in one sitting (thankfully, they are pretty rich, so one cookie satisfies for a good long time. =)

  12. Tom Linden Says:

    It’s great to hear the lightened spirit in your writing voice, Bruce. If there was any logical reason why the Chinese blocked you (which I doubt), it must be your questioning of authority. You’ve emboldened a lot of people to question their doctors, nurses and health care in general, and that’s a good thing. I thank you for that… and good luck on your next LP.

  13. Hopie Says:

    I have sent you some of berger cookies that Courtnet recommended, Enjoy and get fat!

  14. Hopie Says:

    I am HOPE!

  15. Peggie Neill Says:

    Bruce –
    Back in town and getting to read your new posting from home. And read your followers/friends/family comments. Wow – it is readily evident that your calmness is contagious – must be one of those social network kind of things.
    I just love thinking of you more settled, more sleep, comforts of home, wrapping yourself in everyone’s love, replenished to better face the day.
    Love you,
    Peggie

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