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Day 68

September 13, 2012

I seem to physically be in a fairly stable place for the last 1-2 weeks.  No significant problems or progress but I did have a little bump.  I had a transient reaction to Neupogen a week ago.  2 days after the injection, I experience severe bilateral thigh pain.  I could barely get down from the curb to the street when I did my walks.  I’ve heard of this reaction but I’ve never seen it first hand nor have I experienced it.  I’m OK now, just another “experience” on this E ticket ride.  I was a little surprised but I’ve made peace that anything is possible.

I still look at time from one clinic visit to the next, every Monday and Thursday.  Waiting for the day when my WBC (previous donor WBC but now mine) will start increasing.  I’ve heard testamonials from people that they can take a long time to proliferate even more than the magical “100 days”.  One person said her WBC started producing just before a second bone marrow transplant was about to be done.

Mentally, I’m more alert and I think my cognitive functions have improved.  I see steady progress but I still have a way to go.  I think one thing and say another, I forget where I’m going in mid sentence, fight to remember words, etc…  Physically, I’m doing better increasing my endurance and strength but I still take naps.  The physical therapist saysI have a way to go, just need to give it a year or two.  I know I need to be patient but a “year or two?”  It’s tough to be that patient not to mention who knows what hidden land mines are in front of me.

I guess what I’m struggling with most is my emotional state.  I seem to oscillate between periods of feeling OK, acceptance of my predicament, and hopeful with periods of depression, anxiety, and fearful that the transplant will fail.  I remember an old cartoon where a little angel sits on one shoulder and on the other is a little devil.  Both are whispering into an ear vying for control.  I have to keep reminding myself that ultimately I make the choice of whom I’ll listen to.

I feel almost guilty for complaining since I’ve met cancer and transplant patients with incredible stories.  I’ve been fortunate in that I haven’t had any significant GVHD problems.  I’m also been blessed in that my oldest son Sam is visiting me right now.  I guess I’m a little impatient in that I’m looking forward to day 100 where hopefully the  face mask comes off, I’m released from the shackles of a low bacterial diet, and I can go home.

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17 Comments
  1. Charlie Young permalink

    Distractions in our daily routines are important and we can take them for granted. I suppose loosing yourself performing your routine is the best thing to balance out the slow churning rigors of having to worry about things. Hang in there Jim, I see you working in your own garden soon.

  2. susan garfield permalink

    missed you at dinner. your mom was having a blast. friends, kids and grandkids. it was a beautiful thing. xoxo and to claire too.

  3. alexis permalink

    hang in there- you only have less than a month to go 🙂
    try your best to ignore the bad feelings as well as the “little shoulder devil”

  4. Harvey Rudman permalink

    Dear JImbo, Glad to hear from you, we are on our way down to LA this weekend. If your up to it, I will give you a call (phone). Give love to C, and keep getting stronger. HR

  5. Alan Shonkoff permalink

    Dear Jim,

    Reading your posts, I have been so deeply moved and inspired by your strength and wisdom. You have been struggling with an unbelievably challenging experience that few people ever have to face. The angel and the devil on opposing shoulders are always in conflict. To a point, there is some choice to attend to one voice or the other, but I don’t think there’s ever a time when the devil completely goes away, never to return again. My prayer for you is ever increasing strength in body, soul and mind. You WILL get through this. And I look forward to playing chamber music with you whenever you’re ready!

    Alan

  6. George Schneer permalink

    Jim:

    Some quotes from your blog:

    – “I see steady progress” – that’s excellent, always great to see things go in the right direction.
    – “It’s tough to be that patient” – hang in there, think positive.
    – “choice of whom I’ll listen to” – listen to the angel now; there will be time to listen to the devil later on.

    Great reading your blog. As I have said many times – “Hang in there”. We are rooting for you.

    George Schneer

  7. Melinda permalink

    I agree with Alexis ignore the devil on your shoulder! Stick in there. Thinking about you everyday. Glad Sam is there to keep you company, so proud of him getting a job. Went to spin class with Naomi yesterday – she’s my gym buddy! We miss you. Stay strong.
    Love, Melinda and Todd

  8. jomobri1231@comcast.net permalink

    Hi, Jim

    Don’t be so hard on your self – you will have good and bad days regardless.

    We are really looking forward to seeing you this coming Monday.

    Please ask Clare to let me know what we can bring.

    My cell is 408-891-7851.

    I also need to have her cell #  so we can confirm the time of visit.

  9. Brent permalink

    Jim,
    Since I am an engineer / nerd type and I don’t speak Dr. language, I look everything up on the Internet, such as whatever GVHD is and so forth.
    In my exploring, I ran into an article that might be of interest to you. A recent (May 2012) drug approval in Canada.
    http://www.natlawreview.com/article/world-s-first-stem-cell-drug-approval-achieved-canada

    Also, from what I am finding out, you are really moving along at the expected ‘norm’ and shouldn’t be overly worried.
    As the sign in the podiatrist’s office says: “Time wounds all heels” so just hang in there.

    Brent

  10. Linda Bobbitt permalink

    I aslo agree, ignore the devil on your shoulder. Only listen to the angel. After what you have gone through you have a right to feel down once in a while but don’t stay down. We are pulling for you and praying for you everyday. We sure miss you and want you back but don’t hurry things. Listen to your heart it will never stear you wrong.
    Keep up the good work and when your ready for it I will make you the best spaghetti sauce you have every had. Don’t forget I am an Italian. We love you, Dennis and Linda

  11. Esther Levandoski permalink

    I forget things half way through sentences also. What is my excuse?
    Keep up the positive. You will be fine. The finish line is in sight!
    Hi to Claire,
    Love,
    Esther

  12. nina@asis.com permalink

    Picture yourself at home!! And ask others who can do it to do the same. I’ll icture you with your mask off. And imagine that count rising on a graph. I think you are on a wisdom path thru your body. Just received the Humboldt 2013 dates from Alan Geier and am picturing you there, picturing us there. Warmest hugs Nina

  13. Roy Schneider permalink

    Jim
    I am impressed and inspired with you stamina. I hope with this year you will be inscribed in the book of Heath and long life. Tekiah gidola!

  14. Buzz Harris permalink

    Hey kid– it was so great to see you–I’m riding shotgun in the invisible Clint Eastwood chair— you can’t see me,, but I’m there,,no over here,, no over here, no,here, here, there.. .Don’t blink– keep laughing — your spirit is infectious– no doubt it is hard to slow down– especially if you were never a big pothead–chanting is good, settles that restless mind– breathe through the mental struggles,, welcome them,, “Oh hi there little struggling mind,, groping fro control,, ha ha ha ,, you’re so cute– now go have some ice cream..”

  15. Larry Levin permalink

    Jim, I just checked your blog to get the latest news since I hadn’t received any updates through my e-mail in the past week or two. It’s good to hear that you have not had any major setbacks. Diane and I want to wish you Shana Tova. May the new year herald rapid improvement in your WBC and overall health.
    Larry and Diane

  16. Eva Langfeldt permalink

    Jim, I just now found out about and read your entire blog. Reading it was a moving experience for me. We missed you at Humboldt and look forward to having you back in our midst next summer. I wish you well with all my heart! I also would like to say happy birthday, belatedly, and Shana Tova.

    – Eva

  17. Buzz Harris permalink

    Don’t let the door hit you on the way out…. Abandoning the City of Angels one more time.. I never get used to it. And how about those Giants,, , winning two of three World Series??????? Who the hell are those guys? Buster Hyman as catcher,, what kind of name is that ? Pablo Sandoval? he makes Prince Fielder look like a Weight Watchers ad…. If you’re not laughing brother Jim, then you need to stay at COH another week,,, but I know you are,, you and I will always be 12…..

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