Friday, November 19, 2010

Radiation Roller Coaster

Much has happened in the eleven days since beginning radiation. Many of the changes are difficult for me to interpret yet with such limited data on the use of splenic irradiation with leukemia. Amazingly, today's labs revealed a WBC (White Blood Count) of 6400 - I have never had a WBC that low (even after chemotherapy on 5 different conditions). A portion of my heart wants to leap with excitement at having a normal WBC, yet, I know it is far too early for celebrations. Radiation was again canceled today due to my counts being too low.

Thus far, I have received (3) 50 cGy fractions last week and (1) 25 cGy fraction this week. The plan was for me to have received a cumulative dose of 300 cGy by today, however, I have only received 175 cGy due to the drastic changes in my counts.

I have concerns because it is not as if only the lymphocytes are being eradicated -- all of my counts continue to decrease - is this indicative of failure of the marrow? I am trying to uncover that answer. Of this week's scheduled 3 radiation fractions (doses), I only received a half dose (25 cGy) on Wednesday.

Today my hemoglobin is 3 points less than it was 11 days ago and my platelets are half of what they were 11 days ago. This concerns me that the marrow is struggling to produce blood components. With the loss of another point or so, discussions will begin on blood transfusions, which I hope to avoid due to past serious reactions to blood products. And my platelets are approaching levels, where my doctor has given me warnings not to get cut and to watch for abnormal bleeding since platelets clot our blood.

Last night, my NIH oncologist e-mailed me some information. It is intriguing, however, I have not yet determined what this development of extramedulary hematopoiesis (that he mentioned to me) could mean for me. Basically EMG is when the blood producing capabilites of the bone marrow are relocated to another area - Dr. M speculated that since my marrow is very hypercellular, that the spleen might now be operating as my marrow. Does this possibility mean that I should NOT be receiving splenic irradiation? Will my bone marrow function if the spleen has assumed the role of blood production? I am confused with some of this and need to focus on further research.

I always stand in amazement at the complexities of the human body. Our infinite minds simply cannot conquer all of the questions about the body's functioning, because we are not its Creator. God created the amazing human body and despite the best efforts of brilliant men and women, many questions about the human body never will be answered.

The one other positive lab report that I noted on the CBC today is that there is quite a change in the differential (a differential takes the white blood cells and details how many of each white blood cell line is present). Normally, I have 95 to 99 percent lymphocytes (remember B-lymphocytes are the cancerous cells in my body) and 1-5 percent neutrophils. Today, I have 69% lymphocytes, 29% neutrophils and the remainder in monos, baso, eos (and I usually do not have any of these white blood cell lines on the differential). So, despite the much lower WBC, I am not seriously neutropenic (ANC 1856).

My Absolute Lymphocyte Count (lymphocytes are cancerous) has decreased by 90 percent in 11 days - 43,262 to 4416. I wish I knew how many of these 40,000 lymphocytes were B-Cells and how many were T-Cells (non-cancerous).

We rechecked my immunoglobulins (another measurement of immune function) on Wednesday (IgG, IgA, IgM) and they had improved somewhat since beginning radiation. That was encouraging.

The nausea and fatigue have not been as debilitating this week as last (lower dose) but they are still present and infringing on my quality of life. Given my low energy, I have a seven-day timeline designed to help me have a Thanksgiving dinner on the table by Thursday!

I have been so pleased with the radiation oncologist and his team. He meets with me everyday that I have radiation and is thoughtful and conservative about deciding when/if I will receive the radiation dose. Today, he told me, "Stacie, you told me how you have always really responded to any treatment and how cautiously we would have to proceed - were you right about that!"

And after he and I had reviewed the labs and pondered our next steps, he said, "Wait a minute, I have to check something." And he and some staff returned with a birthday present and card for me. Can you believe that? I wanted to cry. They gave me a garden stone that has HOPE engraved in it. :-)

Tonight I was pondering the complexities and unknowns with this treatment. It came to me, that I am on a radiation bus ride and God is the Bus Driver. At times, fear attempts to creep onto this bus ride with me and tempts me to jump out the door and off the radiation bus. However, if I am truly trusting this "Bus Driver", I will just remain on the "bus" and trust Him to deliver me to my ultimate destination. If I was on a bus, I would not have to know all of the details, routes, directions, and stops because the bus driver would have all of that information and I could sleep all the way to my destination and that driver would deliver me. Why should this "ride" be any different? I do not have all of the answers, details, outcomes, or facts about this radiation, yet, if I am trusting God to drive me through it, I will have to sit back and trust Him. That is what I am reminding myself daily.

Please pray:

-That God will protect me from infections.
-That God will continue to bless my medical team with the wisdom that they need to make the best recommendations for me.
-That God will restore all of my counts to normal levels.
-That no matter where my body is producing blood cells for me (marrow, spleen), that God can work all of that together for good to help me and not harm me.
-That God will allow me to feel better.

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