Wednesday, December 08, 2010

By Way of Explanation

Not much to report today, but a visit to the Infectious Disease doctor (follow-up visit from the three infections I had while in the hospital--I'm done with my $1,300 8-day antibiotic--and if I get any fever, chills, or diarrhea, I'm to contact my oncologist and probably be admitted to the hospital for IV antibiotics--pray for me), and the departure of my dear mother (I don't want to talk about it--but she'll be back soon for Christmas).

So... some explanation based on numerous questions:
  • I have A.L.L.--acute lymphoblastic leukemia. Acute means it came on super fast--my oncologist said if I had had a blood test three months before, this never would have shown up. Lymphoblastic means my bone marrow is producing distorted lymphoblasts instead of the correct ratio of white and red blood cells. As one friend said, it's really an awful name, but I should work with the acronym, playing on the famous Mormon hymn, "Come, Come Ye Saints": "A.L.L. is not well, but A.L.L. is OK."
  • My bone marrow biopsy from yesterday will determine whether or not my leukemia is in remission. That means a close look at my bone marrow will tell what kind of blood it's making--if it's making regular ratios of the right kinds of white and red blood cells, then I'm in remission. If not, then we fight it more aggressively.
  • I will have chemotherapy treatments for the next two years, even if I'm in remission. The first phase was an "induction" phase, and the next two phases are "intensification" phases, followed with "maintenance." This is to ensure that the cancer is indeed gone and doesn't return. Supposedly these next phases are not as hard as the first one.
  • If I'm not in remission, this will change the next course of chemo to something more aggressive. But we'll talk about that when we get there. My oncologist doesn't think this will happen, based on how I've responded to this first round.
  • Chemo kills my blood cells, both the bad stuff (lymphblasts) and the good stuff, which is why I've had to have several transfusions, platelets, and shots to boost my white blood cells. And this is why I have to have my blood drawn nearly every day. So far since I've been discharged, I haven't needed anything extra. But I will. Oh I will. And I'll be prepared with benadryl to prevent another allergic reaction.
  • I am scheduled to start my next round of chemo on Monday. Day 1 is a spinal tap to see how the fluid in my spine has held up through chemo, and to administer the first type of chemo through my spine. It's done in the radiology department in the hospital. I'll be honest: I'm a little freaked out. And I'll have to do this on the first day of each round of all remaining five rounds of chemo. BUT, they say it's not as bad as a bone marrow biopsy (or as I like to say, in a Greek accent, bibopsy. Name the movie). I've done that. Twice. So I can do this, right?
  • The remaining 24 days are done as an outpatient in the Outpatient Infusion Center at the hospital.
So when people ask me if I'm back to normal, the answer is no. No I'm not. And I don't know if I will be. I'm still so so so tired. I sit around a lot and read or sleep or watch TV. I can't wait for the day when I can catch up on my missed deadlines for articles, or actually work on my dissertation. Or catch up on emails. And thank-you cards.

And I'm saving up tonight for a Ward Council meeting. I'm so excited for an hour or two to get out of my bed, NOT for a doctor's appointment. I get to put on a skirt! and boots!


Leslie Green said...

Ah, I love that movie!! After dealing with chronic pain for nearly 2 years now, I understand being so so tired. (I only used 2 "so"s because I am not trying to compare my diagnosis w/'s only fair!) If I have a good day I usually have a hard day the next day. It's no fun but I'm sure there's something amazing we're to learn from these difficult times, right? :D

The Wyler Family said...

so good to talk to you today! you really are an amazing person. i've always known that. i love you all the days!

Laurel said...

you CAN do this.
You can...and you ARE.
Amazingly heroically unbelievably well.

gosh, i love you.
(and praying for you...always.)

Barbara said...

Jenny Fur, I want to send some energy your way. I think I have way too much and I know I'm not using it well, so that's it, you get it. It's flying right over the desert, blowing kisses to Annie and your Mom and Nomi then Lisa, and headed right for you. Wish it were that easy. Love you Jenny