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Day 42

August 18, 2012

Dear Friends,

Each day I feel stronger, more energy, eating better, and more able to concentrate and think.  That in itself is something to celebrate.  On top of that, I’ve had visitors including my daughter, Naomi, from San Francisco and my son, Joe, who arrived yesterday.  It’s such a joy to see family and friends.  Getting your comments and emails also bring a smile to my face.  There are parts of this experience that I really like.  Warm balmy evening strolls through the rose and sculpture garden with Claire.  It’s sort of surreal in that I feel truly in the moment.  Life has become simple, just heal, get better, and try to be positive.

But as I mentioned in earlier blogs, there are lots of unknowns and land mines on this path.  Although I feel good, my white blood cells have not increased much and I’m currently at about 2.6 (nl is 5-10).  I had a follow-up bone marrow biopsy last week and it shows that my T cells, CD3, are 85% from my donor, John my brother, and 15% from me.  This is not good in that my T cell count is too high but it’s hard to know which way things will go.  Obviously the transplant doctor is doing everything she can.  I’m trying to stay positive and not succumb to negative thoughts but it’s hard.  Just have to wait and see.

In the meantime, I’m doing something I haven’t ever done before.  I’m visualizing the donor’s cells eliminating my residual cells in cell to cell combat.  I’m also talking to myself telling my cells it’s OK to let go to save planet Jim and talking to the donor cells telling them that it’s time to go out there and kick some butt!

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12 Comments
  1. Charlie Young permalink

    I am going to visualize with you Jim. Your donor T cells are the 49ers and your T cells are the St. Louis Lambs. We know who is going to win that one!

  2. dealprop@aol.com permalink

    Glad to hear your progressing presently in NYC. We intend to come see you in mid Sept.if it’s’allowable. Love to C’. H+K
    Sent on the Sprint® Now Network from my BlackBerry®

  3. Sarah Engelman permalink

    Jim, you have a great attitude. We can all learn something from your experience. Wishing you all the luck in your cell to cell combat!

  4. Duffy Grant permalink

    Who would of thought…Jim Engelman as our guru! We will all spend time visualizing with and for you. Kick butt.
    Love,
    Duffy

  5. rose marie cardona permalink

    Hello Dr. Engelman, I tried once before to email you and it got kicked back..so I thought I would give it another try. We look forward to your posts, learning of the processes you are experiencing, the ups and downs, the hopes and discouragement. You truly have endured and tolerated more than some could ever do. As you mentioned, the family and friend support keeps you going. We were happy to hear that October might be a “liberation” month. That will not be the end, but it will be the beginning. Hank is recuperating from his valve replacement and double by-pass. Operation took place five weeks ago at El Camino Hospital in Mountain View. Awesome hospital and Dr. Dunnington was superb. Endurance has a long way to regain, but he looks good and feels good. Please know that you are often thought of, especially in our prayers. Hank and Rose Marie

    ________________________________

  6. Hal Hyde permalink

    Dear Jim- The Hyde family has really appreciated your messages these last weeks and has followed with great interest your trials and tribulations as you fced your challenges. We are certainly proud and pleased with your progress and continue to be supportive as you face each new challenge. Please hang in there and be optimistic. We continue in our good health without your watchful eyes but will be relieved to have you holding our hands. We send you and yours much love. Most cordially,

    Hal, Dottie, Chris and Marilyn

  7. Esther Levandoski permalink

    We are also thinking of visiting you the second part of September. Let me know what dates would work for you. Sending positive thoughts your way.
    Love, Esther

  8. Dante brown permalink

    Hi Jim, Mike and I are thinking about you all the time as we hike in the healthy air of Aspen, a place you know well, where we are visiting Mike’s parents. Today we really were thinking of you as we enjoyed the last concert of the Aspen Music Festival…Mahler’s 8th symphony, the 1,000 voices. What beautiful music! Flutes and all. We think you have come a huge distance in a few short weeks and your attitude is so inspirational. Siena and I are over our colds so Mike and I definitely will come visit soon after Mike and I return to L. A.

    Dante

  9. Ann S. permalink

    S’up Doc,

    So far you’ve kicked butt on the other bumps on the road, and you will on this, too. This patience thing is hard, huh? Like the others, I am joining the visualization.

    Taking a bit of a turn, but still connected, do you know the recordings of R. Carlos Nakai? He’s Navajo, a Grammy winner, and plays Native American Flute. It’s about as close as I get to anything spiritual, and it really encapsulates me – my own form of meditation. “Sanctuary”, “Canyon Trilogy” and “Inner Voices” are my 3 go-tos, but he’s recorded a lot.

    Ann

  10. Nina Haedrich permalink

    Hi dear Jim — what an adventure, eh? Being in the Now, feeling the simplicity of Life, and the intense JOy of the smallest things as well as the BIG stuff like Tcells and etc. And experiementing with inner communication!! Another exercise you might want to try is the 5 minute Point of Power exercise. It is like a meditation that directs your power to where you need & want it to go by concentrating, repeating silently but with great intensity what you want. For example: I want my transplant to be completely totally successful. You body from the smallest microbes knows what needs to be done to this end and you energizing power to that end is like a booster shot to the success of that process. It has been amazingly effective for me!! Many warm hugs. Maybe I’ll do a Power Point on your befhalf but it is most powerful when you do it. NIna

  11. Hi Jim,
    So glad to see another post from you. I have been keeping up as good as I can with all of your posts. You are so positive and have a great attitude about this whole experience. What a trouper.
    You keep talking to yourself and to those Tcells. And it is definatly OK to save planet Jim there are to many people out here that need him and miss him (Jim). I will continue my prayers for you and I do everyday. We love you and miss you, Dennis and Linda

  12. Linda Schwartzman permalink

    Hi Jim. You don’t know me but maybe have heard about me from your brother or sister in law. I met them at a dinner party in Palm Springs given by their San Francisco neighbors, Suzy and Bennett Katz. Suzy had told them that I too was dealing with Leukemia and was leaving shortly to return to City of Hope for stem cell transplants from an outside donor. They thought we might meet at Hope Village, where I would be staying with my husband following my release from COH. I was fortunate enough to be doing well and have all my blood counts high enough to leave the Village a month earlier than expected to move back to Palm Springs and resume my life of face masks, swollen feet and the boring low bacteria diet. I still drive back twice a week to see my doctor, Dr. Forman. Your recent blog was sent to me by Suzy and it took me back very quickly to my time in Hope Village. My Leukemia was discovered in January and I spent most of my time in the hospital at COH after that being treated with massive doses of chemo in preparation for stem cell transplants on June 2nd. I too was pretty discouraged about my stubborn white count hovering at rock bottom levels and then crawling slowly up to the high 2’s only to drop back down again the very next day. I can assure you that you will discover one day soon your white count has finally zoomed upward and you will feel immense relief that one hurdle is finally been past. I am at 4.8 as of Monday’s checkup and it was like getting a huge present dropped in my lap! I feel the most important thing I did for myself was to consume about 90 gr. of protein daily. I was aware that your body needs more protein to heal quicker, but eating that much protein every day was difficult. Then one of the LPN’s I met at COH told me about a 30 gr. protein drink I could buy at Costco. She suggested starting my morning with the drink each day, particularly since mornings were my most difficult times for strength. My husband and I also looked forward to walking in the rose gardens each morning and early evening. I felt it was physically and mentally one of the best things I could do for myself. Have you met all the skunks yet? Quite a shock at first to discover that if you walk after 8:00 p.m. you can find yourself surrounded by a group of very happy skunks scurring in every direction! We would quickly alter our walking plan to a different route. I wish you the very best in your journey to recovery. Hang onto each and every friend (and stranger’s) offer to include you in their daily prayers and take comfort in the power of so many prayers being offered for your recovery. I firmly believe that was a vital part of my recovery. I was not alone in the fight. I was confident that with so many people fighting for my health, I could relax and just concentrate on getting better day by day. It took away a lot of my emotional stress. If you feel like discussing any part of your experiences with me, I am a great listener. I have lived in your shoes and am finally facing the light at the end of the long tunnel of recovery. You will too! Linda Schwartzman (Day 79)

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