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.

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.