White Blood Cell Counts and Other Stuff 2/1/2008

We hit a glitch on Wednesday when Phil's white blood cell counts were too low. He was not able to have his CPT11 and Avastin infusions. The oncologist recommended waiting one week and retesting. If his blood counts are up, he'll be able to go ahead with it. I called Jeanne Wallace, Phil's nutritionist, and she recommended a couple of supplements that should help to bring up his blood counts and guard against infections. So he has started taking those.

Naturally, when there is any deviation from the expected course, it can be disconcerting. The oncologist assured us that this is not unusual and waiting a week should do the trick.

Apart from blood counts and infusions, occassionally, Phil feels "bummed" about losses he has experienced. Though his speech seems more fluent these days (many have told me so, and I've observed it, too) he sometimes feels sad when he observes how much harder it is for him to communicate something that he used to communicate effortlessly. It is the contrast between his former level of functioning and his current one that saddens him at times. And he really misses his beautiful hair. Fortunately, he has a beautiful head, but he doesn't think that is much consolation. :-) I don't blame him really. He doesn't ever seem to get stuck, though. There is always something he's interested in doing or seeing or listening to. And his speech is improving, so he's feeling more sociable.

On another note, we are quite happy that the 4th (and final..*sniff*) season of LOST has started. :-) You might recall that we spent the early part of our bt journey watching the 2nd season of LOST on DVD. I'm sure there is a double meaning there somewhere.

Hoping that this finds all of you well and close to the ones you love.

Love,
Elizabeth and Phil

Posted by Phil and Elizabeth

2 comments:

  1. Dana SneedWednesday, 06 February, 2008

    Elizabeth and Phil, It's wonderful to see you both so happy together on that beautiful snowy day! I've been thinking about you and am so glad to see all is well. Life is so different but so precious,too. John continues to do fine and looks forward to his 3 yr anniversary in April. Miracles do happen! Love, Dana

    ReplyDelete
  2. AnonymousTuesday, 12 February, 2008

    Lost has 5 seasons, so we still have one more to go, can't be sad yet! -erin

    ReplyDelete

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Basic Timeline....

  • 11/10/2006: First seizure followed by a week or two of testing. Diagnosis of brain tumor followed.
  • 2/19/2007: A follow-up MRI scan showed rapid progression of the tumor, necessitating surgery.
  • 2/27/07: Brain surgery at UCSF Medical Center with Dr. Mitchel Berger. Good surgery and good recovery.
  • 3/28 - 5/10/07: Started clinical trial of daily oral chemo (Temozolomide) and Enzastaurin (an experimental drug).
  • 5/10/07: Phil completed his radiation cycle. Stopped chemo. Continued Enzastaurin.
  • 6/4/07: Started Temozolomide on 5/23 schedule (5 days on/23 days off.)
  • 7/24/07: MRI showed significant tumor progression. Stopped clinical trial and temozolomide.
  • 7/31/07: Began another chemo protocol with CPT11 and Avastin with infusions every 2 weeks.
  • 9/4/07: MRI showed the tumor shrinking considerably!
  • 10/17/07: MRI showed stable tumor. No progression. Speech and vision worse. Avastin dose halved to slow damage to healthy brain tissue.
  • 11/26/07: MRI showed more shrinkage in one area, and no growth in other parts of the tumor. Clinical improvement. Continue CPT11/Avastin at same dose and frequency.
  • 1/25/08: MRI-Stable. All tumor progression is gone. One small area left that continues to shrink. YAY! Continue CPT11/Avastin.
  • Next MRI scheduled for March 26th.
  • 3/26/08: MRI "pretty much clear;" Stopping tx for one month; then scan again.
  • July/08: Restarted avastin because of possible tumor regrowth, or other effects of stopping avastin. Infusion every 2 weeks. Scan in one month.
  • Sept/08: Scan improved. Change frequency of avastin infustion to every 3 weeks. Scan in early October.
  • 10/6/2008: Scan showed some vague changes but tumor seems "stable." Phil feels some pressure in his head, though the scan does not show evidence of this. Will increase avastin to every 2 weeks to see if that will generate improvements. Next scan will be early November.

    One of Phil's friends sent this beautiful quote:

    “When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand, the friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” -Henri Nouwen