The Many Traffic Signs on this CLL Road….

I’m glad that we chose to view this as a journey.  In planning a trip, you map out the best path to take, consider where you want to stop along the way, and what all you want to see.  It is usually defined by the amount of time you have, whether it’s one week, two, or for the lucky few even a month. 

Once you set out, there are road signs along the way that guide, advise, and even provide warnings.  Sometimes you run into an unexpected detour, which takes you off your planned path, and you have no idea where you are!

In the short time since I was diagnosed, our journey has already encountered several signs.  When we first learned that I had CLL, the sign said “SLOW.”  No hurry.  No real worries at this point.  Most people live for decades.   And when the time comes that treatment is needed, it will be fairly mild.  You can still work.  You won’t lose your hair.

Within a couple weeks, we got test results showing that my white blood count had doubled in two months.  (We had already read that doubling in six months would trigger treatment.)  The traffic light just turned GREEN.  Then when the 17p deletion result came back minutes later it was like a semi-truck was barreling down the road behind us, blaring on his horn…GO, GO, GO!!!!!

Next we learn of the proposed chemo regimen, get on schedule with MD Anderson for all my pre-transplant tests, accept the fact that now I AM going to lose my hair, not be able to work, not be around crowds….  The Speed Limit went from 5MPH to 70MPH! 

Then today, it was back to the good doctor.  Another finger prick revealed that my counts went down a little this week.  What kind of sign is that?  Are we still on the same road?  Is our destination still the same?  Do we have a different arrival time?  Today’s test allowed the sign “PROCEED WITH CAUTION” to be added.  The good doctor in reviewing the pros and cons of FCR was concerned that it might not be the best choice for pre-transplant chemo.  We learned that once you use it, your body could never handle it again.  And it might do so much damage to the bone marrow that the transplant won’t take as well.  So fortunately there’s not just “ONE WAY” to deal with this.

This sign is allowing the good doctor to consider another chemo option…Treanda Rituxan, also known as BR.  (It’s not a typo.  But I don’t remember where the “B” came from.) He is going to consult with the heads of the bone marrow department at MD Anderson.  (Paul recognized their names as they have written many of the articles we’ve read.)   So, we will follow the signs to MD Anderson on October 10 to begin my bone marrow evaluation and testing process.   My brother and probably others will be tested until we find a match.  The good doctor will review my case with his peers “AUTHORIZED PERSONNEL ONLY” and decide when, where, and how to proceed.   I’m glad that someone besides me is driving!  But I am very glad that we are studying the map together.

The transplant is inevitable, unless God decides on an old fashioned miracle.  We are just not sure if it will be in one month, two months, or a few more.  There are many variables.  My test results, continued blood counts, finding a transplant match, watching for any growing symptoms.  We do not want to see “BUMP AHEAD.” 

“BUCKLE UP!”  It’s going to be quite a ride.

In the stillness...

Ever since I was young, I felt that God probably liked the country best.  I guess I still do.  As a child at Cedar Hill Bible Camp near Dallas and as a teen camper and staffer at Sandy Creek Bible Camp near Washington-on-the-Brazos, I would take long walks down the dirt road bordered by country brush and Texas trees reaching to sky.  There in the quietness, I would talk to God…and He would talk to me.

I know He lives in the city too because that’s where I spend most of my time.  Sometimes we talk while I’m driving, often when I’m in the kitchen, but mostly when I’m out watering the plants.  We’ve had lots to talk about lately.  But sometimes I just need to listen to that still small voice.

Anyone who has known me for more than ten minutes knows that silence doesn’t usually last too long in my presence.  But there’s something about the country that stretches that time out just a bit.  Not always when there’s a group, but when it’s just the two of us, quiet is ok.  You can sense God’s voice whispering through the trees.  You can hear Him in the howl of the coyote, the gentle moo of the cattle, the wail of the screech owl.  You see Him in the intricate spider webs.  You know He has a plan for each when the tiniest ants are devouring a bug a thousand times their size.  This journey is part of His plan too.  I just need to listen.

 

Psalm 19:1-4  “The heavens declare the glory of God; the skies proclaim the work of his hands.  Day after day they pour forth speech; night after night they reveal knowledge.   They have no speech, they use no words; no sound is heard from them. 
Yet their voice goes out into all the earth, their words to the ends of the world. 
In the heavens God has pitched a tent for the sun.”

So this weekend found us making the drive back up to Oletha for some much-needed time away.  Our days have been taken up with research, trying to understand the details of what I have and what treatments seem the most promising.  We have read blogs and national cancer sites.  We have googled and sorted, saved and discarded. 

At the country, there is no internet connection.  There’s barely a phone connection.  If you stand right here and look this way….  The most stressful aspect of the whole weekend was trying to get the water trailer out of the barn after it got backed in caddywhompus.  But we got it.  Time was spent watching the night sky and enjoying the first touch of fall.  We hiked and four-wheeled around the property marking the trees that were lost in this year’s drought.  Once winter sets in, it can be difficult to differentiate between dormant and dead.  The hot pink designation will guide us as we add to our wood supply for future projects. 

We fished a little.  I napped a little.  But mostly we scoured the creek beds and around the tanks for petrified wood.  We already have a number of larger pieces.  This hunt was for smaller ones that could add a natural element to flower arrangements and the like.  As it seems to be with married folks, we find ourselves reading each other’s minds more and more often.  One will say something and the other will get that look and say that they were just thinking the same thing!  This time we both got the idea of using our smallest finds for making a unique serving tray.  In fact, we may make many of our Christmas gifts this year.  From the one hundred year old oak to the million year old petrified wood, we have a lot to work with.  And I’m pretty sure we’ll be home with plenty of down time….

Amidst the gathering, the walking, the fishing, the talking was the ever-present sense of calm.  The silence that isn’t silent.  We were there together.  And God was there with us. 

Today, the business and the busyness of tests and waiting for results continue.  We get back to work.  We book mark more articles.  We wonder what’s next.   But in our hearts is the quiet stillness of walking with God on a path we did not expect.  But it’s ok…He did.

I finally heard....

I had an entirely different thought in mind for today’s post...one that bounced around my head the other night when I again couldn’t sleep.  But that one will have to wait until another day.   Today, I have to admit that I’m scared.

Yesterday was spent finishing up a proposal, making final changes to a newsletter, following up on a few leads, a quick but tiring trip to Walmart, and fixing my somewhat famous chicken pot pie for dinner.  A few of the kids were coming over.  I tried to lie down for a quick nap once the chicken was on to simmer, but I couldn’t relax.  You know how it is when you still have things to do.  Then my phone rang.   713-…another stupid solicitation call.   But whoever it was left a message.  That’s weird.  They don’t normally leave messages.  So I dialed voicemail and punched in my code.  “This is the pharmacy for oncology.  Please call us at….”  I couldn’t imagine what it was about, so I called the number.

“We have your prescription (for something that started with a “G”) ready.  Would you like to pick it up or have us ship it to you?” 

“I’m sorry.  I have no idea what this prescription is for.” 

“It’s for nausea.”

“But I’m not nauseated.  Do you have something for being tired?!” 

“Just a moment please while I get the pharmacist….” 

A few minutes later, the pharmacist got on the line and explained who they were and what they do.  Their job is to get all the medications approved with my insurance and then make sure that the meds are available and in place when the doctor is ready for them.  In some cases, like with breast cancer patients, they mail the anti-nausea medication to the house.  In my case, they will have it at the facility when they start my (something that began with an F) regimen.  “You already know what my regimen is going to be?!”  With that, the procedure-following pharmacist realized that she had possibly spoken out of turn and referred me back to my doctor.

So I called the nurse (for the second time that day) and asked her if the good doctor had indeed decided on my regimen and if so could she tell me what it is so we could do the appropriate research.   She did.  FCR.  Fludarabine/Cytoxan/Rituxan. 

By this time, Paul was already home.  He stood next to me nodding his head, already having read about this treatment plan in his endless search for understanding.  I asked the nurse a few clarifying questions.  “Is this chemo going to be given with the hope that it might help fix the problem and then maybe I won’t need the transplant or is it to kill off all the bad stuff in preparation for the transplant?”  The second one.  “So when is all of this going to start?”  Soon.  I am scheduled for my abdominal ultrasound on Monday and should know by then what day I’m going to MDA for my bone marrow evaluation. 

This information should not have come as a shock, but for whatever reason, I hadn’t seen this part happening until after Christmas.   Perhaps because Christmas is my favorite time of year (except that I really love summer too), it never occurred to me that I might not get to do what I’ve always done.   I love the decorating, baking, choosing the right gifts.  I love the music.  I love the busy.  I love the noise.  But most of all, I love the people, my people, all being together.   

I also remember the morning that my daddy died.  After hours of searching, we finally got the call that the authorities had found his car and that…”is someone there with you?  Are you sitting down?”  Why do they say that?  You know what the news is as soon as they ask those questions.  I called my mother to let her know we were on our way over.  All I told her was that they had found him.  I wanted to be with her in person when I told her the rest.  But she kept asking, so I tenderly said that he was gone.  When we got to mama’s house, she was already walking out the door, purse in hand, locking up.  “Mama, where are you going?”  She simply replied, “We’re going to get your daddy!”  That’s when I realized that she hadn’t heard me on the phone.  God had protected her from hearing that while she was alone.  I wrapped my arms around her and said again, “Mama, he’s gone.”  That time she heard.  Sometimes God keeps us from hearing until we’re ready, until someone you love is there to hold you up.  I heard it this time.

I don’t know what the chemo is going to be like, other than “aggressive.”  I don’t know what it’s going to be like to get the transplant.  I don’t know how my body will accept it.  I don’t know how long my recovery will actually be.  But I do know who holds tomorrow and I know who holds my hand.

I don't know about tomorrow,
I just live from day to day.
And I don't borrow from its sunshine
'Cause the skies might turn to grey.
And I don't worry about the future,
'Cause I know what Jesus said,
And today I'm gonna walk right beside him
'Cause He's the one who knows what is ahead.
There are things about tomorrow
That I don't seem to understand
But I know who holds tomorrow
And I know who holds my hand.

And so it began...

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. A 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.  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 Bells Palsy 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 it 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...now we die but 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've 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.

Hello World!

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