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Written by Tamara Fowler

The weekend of June 11, 2011, Paul and I hosted my family reunion at our place in the country. Oletha. Thirty miles west of Centerville, TX, between Marquez and Groesbeck. Our little slice of heaven! It’s been several years since our last family reunion. Uncle James passed, kids have grown up and have had children of their own, many have moved from Houston to various other cities in Texas, lives have changed. But once together, it was like no time had passed at all. That’s the way it is with family.

“Does anyone know what this rash might be?” I asked my cousins.  Impetigo…poison ivy…no one was quite sure.  By Monday, June 13, it was driving me crazy so I called and made an appointment at a convenient medical clinic down the street.  It was easier than going to my regular doctor and waiting two hours just to confirm that I indeed had a rash!  When the doctor came in, she just smiled at me and said that it was not either of those; I had the shingles.  Well, pooh!  This was going to get worse before it got better.  Shingles is from the same family as the chicken pox virus…as well as the Bell’s Palsy that I had a few years back.  Supposedly it is aggravated by stress.  They took some blood as part of the routine procedure and told me to come back in three weeks.

July 6.  I went back for my follow up appointment.  The shingles had begun to improve, but I had gotten a spider bite over the Fourth of July weekend at the country.  They noted that my blood test showed an elevated white blood count but that it was probably from the shingles.  They wanted to do another test just to check.  So they sent me to the lab and then started me on a steroid for the spider bite.  Come back in three weeks.

Before the three weeks were up, I got a call saying that my tests had come back and my white blood count was still elevated and even though it was probably first attributed to the shingles, then to the spider bite, they wanted to refer me to a hematologist…just as a precaution.  Thorough is always good.  So I made my appointment and then Googled the doctor they referred me to and learned that he was a hematologist/oncologist.  “Why are they sending me to an oncologist?!”  After worrying about it for the next 24 hours, I decided that it was not a big deal.  He was probably their hematologist of choice who just happened to also be an oncologist.  No worries.

July 18.  Wow!  I wonder if all oncology office staff are so incredibly nice?  From the receptionist to the phlebotomist to the good doctor himself, everyone was attentive, kind, and caring.  Here the finger prick would deliver results in just minutes.  When I saw the doctor, he already had the results.  Still high.  Not horribly high.  But definitely above normal.  Just as a precaution, he decided to do a CBC, complete blood count.  By this time, I had already Googled “elevated white blood count” and read about leukemia and the various types.  But I don’t have leukemia.  I don’t even feel bad.  He is just being thorough.  It has simply been a series of things that have slightly elevated my counts during this crazy hot/dry summer.  Shingles, spider bite, steroid….  It’ll be fine.

August 8.  Heading back for the results.  I have assured my mom that everything is fine.  You know how moms worry…. another finger prick and in I go.  The good doctor comes in and goes over all the details of my CBC.  My white blood count and lymphocytes went down a tiny bit but were still elevated.  My neutrophil % was low.  In all other areas, I look like the picture of health.  There must have been something there, however, that raised suspicion because he had a pathologist friend of his review my tests as well.  He recommended a flow cytometry test just to rule out leukemia.  More blood.  Come back in three weeks.  He’s very thorough.  Yes, mama, he’s just taking precautions.

August 29.  All the other times I have been to the office, my wait was short and there was rarely another person there.  Today, the waiting room was full of folks with cute little hats, somewhat obvious wigs, all talking and hugging and sharing with one another how good they each looked, what side effects they were experiencing, how others were doing who weren’t there right then, and how back in the old days people would die and never know why…but now we die and at least we know why!  They all seemed quite comfortable with this conversation.  I was not.  I hadn’t needed to be.  I was there today to find out if I might need to be.  Tears stung my eyes and those of a husband across the room who obviously wasn’t ready for this yet either.  “Did I say how good you’re looking today?”

After what seemed to be an endless wait, I was called back for my now regular finger prick and weigh in.  I’d lost a couple pounds….  In the examination room, I waited for the good doctor, still thinking about the lovely, honest people I just met.  He came in carrying a stack of print-outs.  Each week I had been given the one blue sheet with that week’s stats and a second blue sheet with my next appointment.  This was different.  This was a dozen or more pages filled with information that I wasn’t sure I wanted.  “You have what is called Chronic Lymphocytic Leukemia.  It is the slow growing type.  If there’s a good cancer, this is it.  People usually die of old age rather than the disease.  You are only at Stage 0!  We’ll schedule a bone marrow biopsy in four weeks or so, but the recommended treatment at this stage is to ‘Watch & Wait.’  Try not to research the entire internet as it is not regulated.  Stick to the national cancer and lymphoma and leukemia society sites.”  After further explanations of test results, the good doctor rose, took my hand, and said, “I’m so sorry.”  I’m so sorry?  Why is he saying that?

I wandered out to my car.  I called my mom first because she worries so and I knew that my conversation with Paul would be much more lengthy.  “Mama, I have leukemia…but he said that it’s going to be ok……”  I called Paul, told him the same, and asked where we could meet for lunch.  We sat at China Bear, me eating my sushi, edamame, and spring rolls…Paul eating all his fried Chinese favorites…while he poured over all the papers I had brought home.  When we finished, he held me tight and then I went home to get back to work.  Less than thirty minutes later, Paul walked in the door.  “What are you doing home so early?” I asked.  He simply said, “This is where I need to be.”  That’s when I realized that I had cancer.

The next two days, Paul poured over the information sent by the doctor, the additional recommended sites, and probably a lot of material that would have been better left alone.  He made endless notes.  He took all the data he was learning and tried to analyze my test results…trying to understand what it all meant.  And we just spent time together.  He finally realized that he had information overload, but he desperately needed to understand.  He wanted to fix it.  He asked me to schedule a consultation with the good doctor.

September 1.  Another finger prick, just for good measure.  My white blood count had jumped a little higher.  :/  We met with the doctor who patiently answered all of Paul’s very good questions.  In fact, the doctor said that he had a couple of them on his board exams!  I had questions about nutrition, etc.  Once Paul’s questions were satisfied, he asked why we needed to wait four weeks for the bone marrow biopsy.  The doctor said that we didn’t and he could do it right now.  OK….  Shift scene to prepping for the test.  Nurse and doctor each doing their role.  I had heard that this test could really hurt, so he injected a hefty dose of Lidocaine into my hip.  I definitely felt the first two, but the medicine took effect quickly and I didn’t feel the last two or any aspect of the test itself.  Paul watched while he screwed that T-bar into my pelvic bone.  Glad it was numb!  Once he was done and I was bandaged up, I turned over to prepare to leave.  My speech began to slur and my body began to tingle.  They quickly got me back on the table.  Within minutes, my breathing was labored, my blood pressure elevating, and I couldn’t move or talk.  The nurses freaked!  They wanted to get me to the ER immediately.  But the doctor came in and checked me.  I could still wiggle my toes and stick out my tongue.  They started an IV of saline to begin diluting the Lidocaine.  At first they thought it was an allergic reaction, but I’ve had it dozens of times.  I think the hefty dose was just a bit much for my non-hefty back side.  It took over two hours to regain my feeling and ability to move.  They poured me into a wheelchair and then into Paul’s truck.  He drove me home and then poured me into bed.  That was enough excitement for one week!  Paul called my mom and the kids….

September 15.  Paul and I head back to the good doctor’s office for the bone marrow biopsy results.  Another finger prick.  These are beginning to not bother me as much….  He joined us in the examination room with most of the results.  They were not as positive as he had expected.  Two out of three markers were considered “unfavorable.”  But he was still confident that treatment would be later than sooner.  As soon as the FISH results are printed, we will have all the information we need.  What we do not want to see is the “17p deletion.”  It is fairly rare, but missing that portion of the chromosome can render treatment ineffective and usually results in a bone marrow transplant.  But we have no reason to expect….  The nurse popped in handing him the results.  For the briefest moment, the good doctor lost his composed, calm, positive demeanor.  Paul and I both saw it.  Immediately, he regained his confident doctor face and showed us the results.  17p deletion.  “This does not have to mean doomsday.  It simply means that treatment will now be sooner than later.”

With orders for an abdominal ultrasound and a bone marrow evaluation at MD Anderson, Paul and I realize that this journey has just taken a different turn.

I am thankful that God allowed me to get the shingles.