Tuesday, August 11, 2009

Update & Request for Prayer: August 11, 2009

It's been one of those crazy leukemia days. I saw my family physician this morning and had blood drawn. Then I had acupuncture. Next, I had to head for Indianapolis to see my infectious disease doctor. I returned home with e-mails from the NIH. My brain is so full of leukemia and all things leukemia related that it just wants to shut down tonight. I will recap for those of you who have been anticipating an update.

The praise - my WBC continued to decline to 15,300 - that means my ALC decreased by another 3000 (approximately). I am still slightly neutropenic, so I will not know until the morning if the local oncologist wants me to take more Neupogen. My platelets decreased but hemoglobin was up to 11.3 (not normal, but improved).

From the infectious disease doctor -

When I walked in he said, "Wow, I can't believe how well you look and that your family doctor didn't have to call me one time during Rituxan!" He was impressed with this mini-miracle during treatment.

He is a Christian and he told me that he is very concerned about the H1N1 flu pandemic - he said he feels, based on his research, that it is going to be very, very serious. I asked him what that means for me and he said, "Stacie, this could kill you." YIKES - that's being blunt.

He said he recommends for leukemia patients, including me, to be immunized with both the flu and pneumonia vaccine (although I haven't been vaccinated in years due to the anticipated poor response by my immune system). He said for us to time the immunizations so that they are given right before an IVIG dose - not to take them post-IVIG. He also said all of those who will be around me must be immunized this year.

I am taking Cipro (500 mg twice daily) as my prophylactic antibiotic during Rituxan treatment - he does not want me to discontinue Cipro until AFTER the flu season next spring. Cipro makes me really ill, so I hated to hear this, but I appreciate his concern and diligence to protect me from H1N1 induced bacterial pneumonia.

He does not want me to discontinue the prophylactic antifungal Posaconazole or antiviral Acyclovir. I am concerned the Posaconazole is what is causing the continued neutropenia and anemia - so discussion has begun with Ohio State University about a possible bone marrow biopsy on Monday - please say it "ain't" so -you might recall the grief and extreme pain I had with my last bone marrow biopsy at the NIH in May? But a bone marrow biopsy is the only means to determine if the medicines are causing these counts not to recover or if my marrow is too infiltrated from the leukemia and thus, is not producing the blood cells I vitally need.

That's another story - we will be at Ohio State on Sunday and Monday to see my leukemia specialist. Does anyone pay Frequent Driver Miles to Cancer Facilities? :-) I would have enough earned for a great trip to Hawaii after all of our medical related travel this year. Please pray for our safe travel.

I returned home late this evening and had e-mails from two of my NIH doctors. Since I have responded to the half-dose Rituxan and responded without infection, complication, or reaction, they are recommending that I go back to four more additional weeks of Rituxan treatment. Since my tumor load was so high, they believe it might be of value to me to hit/slap/pummel/wallop the leukemia with some more treatment. How is that for visualization?

And I only thought treatment was DONE, FINISHED, CONCLUDED, TERMINATED ......... life with leukemia is never dull or without surprise.

Insurance approval (the "gods" who dictate care - not doctors) will have to be granted, so I believe I have time to travel to see my oncologist at Ohio State on Monday, possibly have the bone marrow biopsy and make this decision to proceed or not to proceed with four additional weeks of treatment before early next week. Please pray for me to make the CORRECT decision, following the course that GOD would choose for me.

As I've written before, cancer is not for wimps. Please continue praying.......

2 comments:

Cip said...

I continue praying, as always.

Love the detailed updates especially with the new less technical words :) Thanks for the visual!

Cindy

Anonymous said...

Wow! What a day! I know God sent his toughest warrior angels with you. Can you imagine the looks on the faces of the docs if they could see the faces of the angels while talking to you? Now THAT would be a Kodak moment! Shelly