Here we go

June 9, 2008

  • It’s Monday evening in Seattle, the skies are clearing after a long rainy spell, and I’m at the University of Washington Medical Center for my second day of “conditioning” for the transplant.  I’m on track to get my new stem cells on Monday, June 16.
  • Last Friday, I got word that the coronavirus, which had caused the recent delay, had cleared from my system (good news), but that, at a molecular level, there are clear indications that the bcr/abl mutation, which causes my leukemia, was starting to increase.  (Not such good news:  The Hyper CVAD induction chemo that I received in April and May did a good job of bringing the bcr/abl mutation down to very low levels, but did not make it undetectable, which would have been the optimum result.  Unfortunately, the bcr/abl levels are already starting to creep up from the low point they’d hit during the Hyper CVAD chemo–a likely indicator of the aggressive nature of the leukemia I’ve got–so the doctors here were eager to get me back on the transplant schedule.)
  • Yesterday, I got the first part of my conditioning (fludarabine and micafungin) at the SCCA clinic on an out-patient basis.  This morning I checked back into the familiar confines of the 7th floor transplant ward at the hospital.  I’ve got a south facing room with a good view of the Montlake Cut (which connects Lakes Washington and Union).  Once the clouds lift, I think I should also have a good view of Mt. Rainier.  I received a big dose of Cytoxan today and will get another tomorrow.  Then a rest day, followed by four days of total body irradiation (TBI).  And then, next Monday, the new stem cells…
  • I’m still feeling pretty good.  Lisa and I walked the couple of miles to the hospital this morning.  Even the rain on my face felt good–particularly since I won’t be able to feel that again for a month or so.  I expect that I’ll start to drag soon from the cumulative effects of the chemo and TBI.  Serious fatigue and mucositis seem to be pretty sure bets, and there are a raft of other possible complications (particularly viral, bacterial, and fungal infections) that the team here will also be focused on preventing or managing.
  • My brother Caleb has been here for about a week now.  The girls, as usual, find him much cooler than their mom or dad.  Mimi helped Caleb make a super stir-fry for supper last night.  It was also great that Natasha, Caleb’s wife, was able to fly out to Seattle for the weekend.  For the first time since we arrived in mid-March, we’ve had a string of rainy days (more typical has been occasional showers, overcast skies, with the sun breaking through every so often).  The rain didn’t slow us down though.  We saw the girls’ drama class productions at the Hutch School (Mimi’s group did a variety show, and Iszy’s crew put on their interpretation of the Dr. Seuss classic, “The Lorax”).  We also visited the Seattle Public Library system’s Central Library, which is a pretty remarkable building; ate some excellent doughnuts (and bought some compensatory fruits and vegetables) at Pike Place Market; did some fun walks and visits to a few of the great parks here; and shared some fine meals.  
  • It’s lately been an occasional challenge for me not to get bogged down in the anxiety, worry, and second-guessing that can try to dominate my thoughts, but times like this past weekend are the best antidote to such troubles.  ”Don’t count the days, but rather make the days count.”  So goes one of the many bits of received wisdom that have helped me with this process.  Good advice, but–as with many such recommendations–easy to say, but harder to do.
  • I am struck by the necessary commitment of this process.  Though I’ve been aiming for the transplant for the past 4 months, the various delays and hurdles that have cropped up have in some ways distracted me from the absolute commitment that is required for the task ahead.  Now I feel very much poised at the top of a big drop.  (Greg’s comment on my last post was very apt.)  Having started the chemo, and soon the radiation, which will combine to wipe out my marrow–and, I hope, the lingering leukemia–there is definitely no turning back.
  • The medical team here continues to inspire confidence and hope.  The doctors have been very responsive to our many questions (including e-mails that I sent them late last night), and we feel that we are in the best place we could be, given the circumstances.
  • I feel strengthened also by the magnificent support from family and friends.  I’d like to write or call lots of you personally and will try to do that over the next few days.  Finally, at Lisa’s request, I’ve not made much mention of her in this journal so far.   But I’m sure it will come as no surprise that she is going above and beyond the vows we made back in 1991 (“for better, for worse… in sickness or in health, to love and to cherish…”).
  • Here we go.

17 Responses to “Here we go”

  1. Fiona Deaves Says:

    Keep on climbing! We are with you and send so much love to you all! xx

  2. Peter Says:

    Good luck, Roger. I’m pulling for you.

  3. lea Says:

    Roger and Lisa-

    You both have been so patient! I am so happy that you were able to go out for a walk while you were still feeling pretty good- Roger I think you are a trooper. Cytoxan is NOT an easy drug.

    Keep in mind, you are going to start FEELING worse as your body gets better. Difficult concept at times to fully appreciate.

    Thinking of you. I was on the 7th floor too. Amber was a GREAT nurse if you ever have her. They were all wonderful.
    -Lea

  4. Jim and Cheryl Moore Says:

    Dear Lisa and Roger,
    It is wonderful to know that Roger is receiving the best medical care available.You all are in our prayers daily as Roger begins the next phase of treatment. We are so happy that Marjorie will be able to visit you. Thanks for the beautiful pictures of Amelia and Isabel! Phoebe, Megan, and Brent, our grandchildren also love to visit gardens. Their favorites are the Huntington Botanical Gardens and the L.A.County Arboretum! Much love and prayers,Cheryl and Jim Moore

  5. Om Abdel Karim aka Nagla Says:

    God bless you Roger, you continue to be in my thoughts…will keep on checking on you..so you keep on connecting with us…take care until your next post in shaa alah

  6. Suzanne and Ken Nash Says:

    Dear Roger and Lisa,
    Thank you for the updates. It is good to keep hearing of the very high level of the medical care and concern.
    Please remember that you are never alone.
    We and all of your family and friends are with you–uphill and
    downhill–and hold you up in prayer every day.
    Love to you and the girls,
    Suzanne and Ken

  7. Frank and Joan Says:

    Good morning,to you, Roger , and to all of your family. We have just read your most recent message, and we join all of the rest of our family and all of your friends in applauding your courage, and Lisa’s as well, and sending our love and prayers. Frank and Joan

  8. Jan Schrader Says:

    Roger, I left a msg. on June 9(1st responder) after having talked with Marjorie and reading your website. (Must have done something wrong.) Does it seem like 17 years already?? I’m glad you had a weekend with family b/f starting the regimen. It’s Wed., your rest day, and we’re hoping and things are going as planned. Please know that our hearts and prayers are with you every inch of the way.
    Jan and Bill

  9. Marly Says:

    Roger and Lisa:

    the 16th is drawing closer, and hopefully you are still on track for Monday. I will say that my parents got married on June 16th, and it has worked well for them, so hopefully that good (and very long lasting….57 years!) karma will be with you as well.

    Marly

  10. matt Says:

    Hi Roger, Lisa, Caleb & Natasha- Nothing to add except I have been reading your blog and am thinking of you here in Durango, Roger! Matt

  11. kristin gerlach Says:

    stay strong — you are amazing!
    hugs to iszy & mimi

  12. Alexandra Baker Says:

    Good luck Roger!
    I’ve been reading your reports during our travels back and forth between VT and WA, and had some updates also from your Mom when we were in VT.
    We are all thinking about you and hope to see you once you are up to having visitors.
    You and your family are in my prayers.
    Fondly,
    Alya Baker

  13. Eleanor Littlefield Says:

    Dear Roger,
    I’ve been reading your blog — also I get updates from your Mom at our Thursday lunches at the college. Talked with her yesterday.
    All the Littlefield’s are thinking of you as you go through this process. Sending love and hugs!
    Eleanor Littlefield

  14. Suni Says:

    Dear Roger,Connie,Caleb,Lisa and girls,
    I’m with you in prayers and confident thoughts,
    sending you blessings,
    yours Suni

  15. Todd Says:

    Roger,

    I just got off the phone with your Mom, and she updated me on your progress. You and I haven’t spoken in a very long time, however, I want you to know our thoughts are with you and your family. I’ve enjoyed hearing about your exotic travels and work assignments through the years from your Mom.

    I have fond memories of your family visiting ours in Guilford, and of course, we had the priviledge of visiting you in Brandon- especially in the “mountain top lodge.”

    Best wishes,

    Todd Humphrey and Robert Ardinger

  16. )tis and Carol Says:

    Dear Roger, Lisa, Mimi, and Iszy, Thank you for keeping us all up to date on what’s happening. You are all so strong and courageous. Keep on trusting. We keep you in our daily prayers. Love, Carol and Otis

  17. Bette Moffett Says:

    Roger, Lisa, Iszy and Amelia,
    Thank you for the latest news, In between blog entries, I hope for good days for all of you. I thought a lot about you last night as I went to a quilt show at the Essex Fairgrounds, where we all attended Dylan’s Concert on that perfect summer night when Iszy chased a pink balloon. Love and courage to all of the Kennas,
    Bette


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