Day 6 Update

June 22, 2008

  • It’s Sunday evening Seattle time, six days since I got my new cells.  At this point in the transplant process–with my old immune system demolished, and the graft (transplant) of the new stem cells infused but not yet engrafted–no news is good news.  The last few days have not been a picnic, but the doctors and nurses all seem pleased that everything is going according to plan.  
  • It’s still far too early for there to be any early signs of engraftment, so all we can do is wait, trying to be patient, for engraftment.  We will know that engraftment is occurring when both my white blood cell and absolute neutrophil counts start to rise.  Both numbers (which indicate infection fighting capacity) have been at zero since June 18.
  • My biggest challenge continues to be the mucositis, which makes it very hard to swallow, chew, etc.  I’ve been using morphine to control the worst of the pain, but apparently it’s not possible to eliminate the discomfort entirely.
  • I am grateful that I continue to be able to drink (ice water provides great temporary relief to my mouth) and to consume various soft foods–soggy cereal, some fruit, shakes made with milk and Carnation Instant Breakfast mix, yoghurt, chicken noodle soup, etc.  It’s not a very glamorous diet, but so far I’ve been able to avoid having to use the TPN (total patient nutrition–IV bags of sugars and lipids) which can be “fed” to me via my Hickman line.
  • We had one short-lived moment of concern (no doubt the first of more to come) a few days ago when I got a mild fever.  Even mild fevers in an immuno-suppressed patient can indicate the start of big problems.  The team boosted my antibiotics, ran various blood cultures, and the fever soon passed.  Also, my blood pressure is up, likely from the cyclosporine I’m receiving, which helps to prevent graft vs. host disease.  So I’ve had to start taking a BP medication as well.
  • All of the morphine I’m getting means that the days pass in a dozy blur.  With Lisa’s help, I’m still walking about 1.5 miles in the hallways each day.  My mom has come to Seattle for a visit, and so she too is learning the finer points of walking the halls (which windows have the best views, who among my fellow patients are talkative, etc.).  Caleb and the girls also visit daily.  I’m lucky to have the company.
  • The nights also pass in a dozy blur, made a little less pleasant by all the fluids that are going into me via the Hickman line (lots of trips to the bathroom).  My kidneys are definitely having to work overtime.  Despite the kidney overtime, I have gained a striking amount of fluid weight:  my normal weight is about 200 pounds; this morning I weighed in at 217.  The doctors assure me that this situation is only temporary. 
  • We’ve continued to have great seasonable weather in Seattle, and the views of Rainier from my window are spectacular.  The girls will spend this week in a kayaking/rowing/sailing camp on Lake Union (a 5 min. walk from our apt.) before resuming day camp at the Hutch School.   

14 Responses to “Day 6 Update”

  1. jeff harding Says:

    Dear Roger,
    Just plugged into your blog for the first time in several weeks.
    We got to the US June 4 and I am travelling north with the kids. We dropped Chris at camp in NH for 3 weeks and Carol and I are heading to our Adirondack place.
    I think about you guys a lot and love the pictures of you and the family in Seattle. So great your brother is there.
    We are all sending you good energy to help you through this process.
    love,
    Jeff

  2. Ken Nash Says:

    Hi Roger,

    I am really impressed with your reports of Hutch and the nursing staff. They sound very competent and caring, and they have the time to devote to each patient. You are in good hands and that means a great deal!

    Good luck to the girls in the kayak camp. That should generate some good photos. Keep walking that 1.5 miles!

    Ken, Suzanne and Jennie


  3. It might as well be Seattle here in Addison County: rain, rain, and more rain. We are pulling for you, esp. tose huskies of ours. Talked to Marshall yesterday and he was on top of the world now that school is out. Hi to the family-and love,
    Holly and Bob

  4. Nelson & Sharon Hahn Says:

    Hi, Roger & Lisa –

    We have had a wonderful visit with Marjorie this weekend. For us being here with her brings rest and restoration. We also visited with Carol and Otis, Vance and Diana and kids. We are ready to leave for home with an afternoon stop at Chautaqua to spend a little time with Julie.

    We continue to hold you in our hearts and prayers and follow your progress regularly. Be strong and hang in there! You are amazing and inspiring to the rest of us!

    Love to you and the girls,
    Nelson & Sharon

  5. Yael Says:

    Sorry to have been MIA for the past few days – am trapped in a vortex of CODEL prep. The mucositis sounds horrid, but I like the sound of that morphine pump!! I could actually use one for Andrea, after Italy’s loss last night to Spain in the Euro Championships, so if there are any spares lying around …

    Hang in there – you’re doing amazing! Keep on walking!

  6. Sandra Rempel Says:

    We read your blog every day, and we are delighted with your progress. Thanks Lisa for filling in between. I am learning so much about the prodedure, but especially about your courage and stamina. You both are an inspiration! Give my love to Mom and Caleb. Tell him I’ve enjoyed his webssite tremendously. I forwarded it to a friend and neighbour who will soon be retiring and will be pursuing his hobby of photograghy.He was totally impressed.Again you are in our prayers and those of many here in
    Fort Erie. Love to all, Cousin Sandra & Bob

  7. lea Says:

    Roger and LIsa-

    ThANKS FOR THE updates – it really makes people feel conected as to what you guys are dealing with. PLEASE keep them coming. Yes, Roger, everything you are going through is brutal but normal. I think I had about 4 fevers while I was in patient and the first few times I got really nervous. Keep those liquids and whatever food you can going down your throat! It will help- even if you eventually need the TPN. The longer you can keep your digestive system working on its own- that is great news.

    You are doing GREAT. Who are your nurses and doc?
    xo-L

  8. Catherine Says:

    We really do appreciate hearing from you, and are waiting to hear the good news that your neutrophils are getting their act together.

    Take care,
    Catherine

  9. Marilyn and Henry Freeman Says:

    Roger and Lisa,
    You are, as others have stated, a true inspiration ! The blog entries you write are SO informative to those of us not familiar with all you are going through….it’s like a mini medical course !
    I spoke with Connie just before she was heading out last week. I guess if you have to be stuck somewhere, Seattle isn’t a bad choice….I’ve always heard it’s beautiful there. As another Addison County resident told you, it’s W E T here !
    You are in our thoughts and prayers daily and follow the blog. The girls have changed so much since we saw them at Caleb’s wedding. Connie informed me of Amelia’s
    “tom boy” stage, of which Mattea was at that age….. the no dresses, so frills !
    Blessings,
    Marilyn and Henry

  10. Angela Caldwell Says:

    Hello Roger and All,

    Just read your recent blog entry and sending positive thoughts and energy your way. I am visualizing your numbers improving with each day.

    I hope that being able to view Mt. Rainier gives you strength. I can imagine that something so mighty would be good for the soul. (I never got to see it as the weather was very overcast for my visit.)

    Hang in there. Your strength and courage is amazing.

    Angela Caldwell

  11. Hano Says:

    Many years ago you took me out to a honkin-A rock formation, scrambled up and over the most wicked spot and then hauled my butt up and over after you. It was ridiculous and you got a good laugh out of it. And I remember that when we got back, you charitably reported to the boys that “WE” climbed the wicked rock. Typical, always a gamer, always a good friend.

    Karin Dooley called me just now and that was the first memory that came to me. My thoughts and prayers are with you and your family. Give ‘em hell Rog.

    Your old friend, Hano

  12. Fr Dennis Murphy Says:

    Roger,

    I just heard of your illness. I am praying you will be good as new and that you continue to have the support you need even when you are not feeling too well. I will also ask the nuns I pray with tomorrow to remember you especially in their prayers. They seem always to “get the job done”. We will storm the heavens with our prayers.

    Fr Dennis Murphy, Pierson College

  13. Jan Schrader Says:

    Roger, it’s great to get your latest blog and learn that you’re eating on your own and that you knocked out the fever. Walking 1.5 mi. in a “dozy blur” is an amazing accomplishment. Good job, R & L! I’m always encouraged to read Lea’s comments. She’s pleased so I’m ecstatic! As Angi commented, it’s marvelous that you see Mt. Rainier. Please Tell Mimi and Iszy when they visit, that this ole grandma was white water rafting with the grandkids on the Pidgeon River in Tenn. and that I’d love to join in their water sports at camp, but I’m probably too old. Love to all!
    Jan and Bill

  14. annmarie curtin Says:

    Dear Roger & Lisa,Glad to hear that you have fought off both the elevated temp and the feeding tube. It’s also very good to hear that Lisa has you out of bed and buzzing those halls in a didaudid mind frame. Having had both morphine & didlaudid following a c-section. I must say, I prefer the dilaudud.
    We have been back home since Saturday night and we are still a bit bluurry. John’s treasure trove of medications have followed us home and emain on the kitchen counter where I remain in constant fear of contaminationing them with whatever I’m cooking. Tje lessons of ‘clean enviroment’ has left his head. He too is a trooper–getting out at every opportunity. He actaully went to a Cuban bar to watch a soccer game less than 15 hours after landing in JFK>>
    Obviously he wants to experience it all and I won;t be the one to stop him. John is still have a bout with Gi issues and is not fully absorbing the 12 magnesium tablets he has to take every day. We’ll see what his next lab report reveals. Once again I want to mention what a fabulous job you both have done raising such beautiful, sesitive and fair little girls–truly impressed! Hope you continue on what seems to be just another ‘variable recovery’. We wish you all the best.
    Warmly, Ann Marie & John CUrtin


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