• Things got a bit more intense today, though I think it was pretty tame compared to what’s ahead.  
  • I suppose the most notable development was that I got my first dose of chemo, via a lumbar puncture.  Using a relatively small needle, and liberal amounts of lidocaine, the physician’s assistant tapped into the base of my spinal column to collect a few CCs of my spinal fluid for a test to determine whether the cancer is present in my central nervous system.  The data suggests that even if the disease is not yet evident in my CNS, it could emerge later, so it makes the most sense to get the chemotherapy going in there ASAP, which the PA did by injecting a few CCs of methotrexate.  It looks like I’ll be getting five more of these jabs over the next few months to complete the intrathecal methotrexate therapy.  From what we’ve read, the methotrexate is not likely to cause major side effects.   While the lumbar puncture and methotrexate was no fun, I realize that it’s a lot easier than the other chemo that I’ll be getting down the road.
  • I also got a standard CT scan of my chest and a MUGA (Multiple Gated Acquisition) scan of my heart.  The latter test, which will give the docs a baseline study of my pre-transplant heart function (especially important to measure what, if any, damage might be done by the transplant process),  involved drawing a bit of blood via an IV, mixing the blood with a radioactive tracing agent (half life of six hours–so it should be pretty much gone in the next few days), injecting the now radioactive blood back into me, and then getting several scans of my heart in action. 
  • The PA also told me that the Hutchinson doctors are now reviewing whether my leukemia truly was a lymphoid blast crisis of Chronic Myelogenous Leukemia (CML), or if it might in fact be a so-called Philadelphia-positive Acute Lymphoblastic Leukemia (ALL).  Both are very serious and only curable by a stem cell transplant, but if it’s ALL, it likely will require two rounds of chemo, instead of the one round that is typically done for blast crisis CML.  The key Hutchinson doctors will confer on my case next Wednesday, March 26, to reach a consensus re: my diagnosis.  While my previous doctors at both GWU in Washington, DC, and NIH in Bethesda, Maryland had both felt that I likely had CML, it was clear that neither had conclusively ruled out ALL.  In retrospect, I wish they’d been a bit more focused on getting a definitive diagnosis, since it appears that it will make a significant difference in the course of my upcoming treatment.  
  • All of the action described above took place after mid-day today.  Lisa and I had the morning free, while the girls were in school, so we did a fun walk from the Cascade neighborhood, where SCCA and our apartment are, north to the UW campus, and then back via the Capitol Hill neighborhood.  The rain held off for our walk and we stopped along the way for some Stumptown coffee (based in Portland, OR, I think), which seems to be one of the preferred regional brands. 

5 Responses to “First chemo, MUGA scan, and some lingering uncertainty over the exact type of leukemia I’ve got”

  1. Michael Says:

    Hi Roger – Well, as you said, at least things are underway, finally, and you are in the best place possible for this. Thanks again for the update, Roger. Hang in there — Michael

  2. Greg Felt Says:

    Roger – Hicks and Cornelia were here last night. You’ll be glad to know we dined on Korean-style elk and a batch of homemade potstickers. Not a small amount of Tecate, too. I had not heard about your situation and though we had a great evening, my heart ached for you and your family. It has been a pleasure to me during the last 12 hours to recall that great barbecue we had with Bourke and Chipster and the not-so-amazing fishing that day. There is beauty all around us at every moment – more than our hearts can handle.

    I’ll be keeping in touch, now that I know where you are. You can email me at greg@arkanglers.com. Meantime I’ll be gathering sun, flow from the stream, cottonwood buds, and sizzling meat – put it all in a bundle on some coyote’s back and send him loping to Seattle.

    We love you. You’re strong.

    Felt

  3. Yael Says:

    Roger – Thanks for the update. I’m glad that this process is started, as horrid as it sounds. Am looking forward to taking you out for a stiff drink of scotch this summer, when we are both back in DC! Sending all sorts of good vibes/prayers/thoughts from C-Town. Yael

  4. Bruce Abrams Says:

    Roger,

    We’re back here in Cairo and its not the same without you. Raquel is already enjoying the books and videos you left with us.

    It seems like when all this is done and you’re healthy again you can go to med school with all you’re learning.

    Thanks for keeping us upadted.

    all our wishes are with you and Lisa and the girls.

  5. Gail Wing Says:

    Dear Roger and Lisa,
    I’m indebted to Skip spindler for forwarding information to me this weekend regarding your treatment for leukemia. I’m sorry that I’ve been inattentive to the seriousness of your situation. When my brother John Seymour had his stem cell transplant in 2002, I was his donor. I had an intimate, vested interest in his health and well-being, and can’t help feeling some connection to the processes your are describing in your blog. I know that the medical community has more knowledge and technology for treating your leukemia than they did six years ago. You will be in my prayers, and I will remain hopeful about your outcomes. Give my love to your family. You have been on my mind a lot recently, even if I wasn’t aware of all your are dealing with.

    With prayerful concern from cousin Gail in Nappanee, IN


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