Fork in the Road

Today was the end of the first leg of my journey towards transplant, and we can see the upcoming fork in the road.  Monday, we head back to MD Anderson for a bone marrow biopsy and meeting with Dr. O’Brien and the CLL team.  Wednesday, we’ll get the results of the biopsy and meet with Dr. Shah and the transplant team.  At that point, the decision will be made whether to continue on the Campath road for another round or to take the path directly to transplant.  It all depends on the level of disease left in my marrow.  Having been near 80% diseased marrow, Paul’s bet is on another round of Campath.  I’m ready to move on.  But this part is not our decision.

The past week or so could be classified as “side effect of the day.”  Some days I would have a rash.  Others I would have some light nausea.  Many brought increased fatigue, intestinal distress, or a return of the headaches.  Some weren’t bad at all.  And none have been as bad as the first week!  So for that I am immensely thankful.

I have taken time to read.  (I’m on my third book in four weeks.)  I have talked and Skyped with my kids and grandkids.  I have spent quiet times with my sweetheart.  I had a wonderful visit from a dear friend.  (Love you, Cheryl!)  I have enjoyed several mornings with my cousins, Al & Bonnie, who live around the corner from where I get my shots.  And I even felt well enough last night for my mom and Maxine, her neighbor and buddy, to come over for dinner and a game of cards.  I was pretty pooped out by the end of the evening, but it was a nice tired.

I have come to care deeply for the team at the good doctor’s office.  They are not only efficient but also very compassionate and caring.  It was a little sad leaving today not knowing if I’d be back anytime soon.  I’m sure that the same level of connection will happen with my transplant team on MD Anderson’s 11^th floor.  Prayerfully, a year from now, these will be memories of a time when….  Memories that I will never forget.  Memories that will mold my future.

Steady As She Goes

This is a phrase indicating instruction from the captain to the helmsman of a ship to keep the ship heading steadily on the same course regardless of gusts of wind or cross currents.  That sounds like a fairly accurate description of where I am right now.  I have been steadily receiving my Campath injections for almost three weeks.  A sudden gust at the beginning of week two caused the captain to introduce Neupogen to help keep me on course without sinking the ship.  So far, so good.  My counts continue to climb back into the normal range.

The early onset of thunderous side effects has calmed.  The few that remain or that have recently appeared do not rock the boat like their predecessors.  The headaches are minimal, and I have had no further fever, chills or rigors.  Fatigue is still my daily companion accompanied by increased body/bone ache (due in part to the Neupogen).  The newest squall is a pesky rash, looking more akin to hives, which appears on my face and neck every evening.  Last night was the worst.  After dinner and visiting with Paul and his son Chris, I looked like I had the mumps.   I decided to take an oatmeal bath and soak my face!  I followed that with Aveno lotion, Cortizone cream, two Benedryls, and finally Benedryl gel, which brought the relief needed to sleep.  I should market the mix because this morning my skin looked amazing!  :)  But the rash will most likely return again this evening.  It’s the Campath.

I have been able to wrap my head around most everything we have learned and the choices that have been made on my behalf, but I have to admit that I have not been able to totally understand the relationship between Campath and Neupogen. The goal of Campath is to knock down the leukemia and get me into remission. The Neupogen’s role is to salvage my neutrophils in order to keep my ship from sinking while the hull is being cleaned. My concern was whether or not the Campath could be as effective in its destroying if the Neupogen was rebuilding at the same time. I also wasn’t certain if my increased numbers meant that I was no longer immunocompromised. While I trust the doctors’ judgment, I just needed to understand. Dr. O’Brien’s PA, Jill, emailed a response to my question. “The Campath targets the lymphocytes, and the Neupogen builds the neutrophils, so unrelated to each other (even though they both are part of the white blood cells). Yes, you are still very immunocompromised because of the Campath. More for viral-type illnesses which is where the lymphocytes are important.”

OK.  Good enough.  While the Campath does lower all my numbers, not just my lymphocytes, it’s an answer I can wrap my head around.  

So we will continue sailing through another week of Campath and look forward to my bone marrow biopsy on March 26 to see what kind of damage it did there.  No worries.  We want it to have done some damage!  If it has successfully knocked down the bad guys, we will get ready to proceed to transplant.  If it’s working but still has more to do, then we will hoist the sail for another four weeks.  Whatever the case, the waters are less choppy than before and we are trusting Him to see us through.

“Then they cried out to the LORD in their trouble, 
and He brought them out of their distress.  

He stilled the storm to a whisper; the waves of the sea were hushed.  

They were glad when it grew calm, and He guided them to their desired haven.  

Let them give thanks to the LORD for His unfailing love and His wonderful deeds for men.

Psalm 107: 28-31

A Complete 180

For all of you who prefer Paul’s shorter posts, I am providing one today.  :)  By God’s grace and your faithful prayers, I feel a hundred times better than I did last week.  I have not had any further fevers, chills, rigors, or nausea, and the headaches have been held to a minimum.  I’m still tired, and I still have to behave :/, still need my naps, still have to take all my meds, still can’t go a lot of places or be around little ones, but this is the best I’ve felt since before I started the treatments.

My numbers have come up steadily this week (from 0 to 1 to 2).  And so far, I have not had a reaction to the Neupogen.

God is good.  He was good last week too, even though I felt so bad, because He carried me through.   It gave me an opportunity to see just a little of what the transplant process and side effects might be like.  He is preparing me for what is to come.  Thank you, God, for this week’s respite!

"Praise the Lord; praise God our Savior!  For each day He carries us in His arms."

Psalm 68:19 NLT

Back on Track

Because my counts were too low for me to get a Campath injection on Monday, the office of the good doctor conferred with MD Anderson to decide whether or not to re-start my ramp up doses (since today was 7 days since my last injection) or to continue at 30 mg or a reduced dosage.  The decision to add Neupogen, which helps rebuild the neutrophils, also came into play.

Late yesterday, we learned that we would resume the 30 mg injections and add a Neupogen injection every time I get the Campath or until my neutrophil numbers have risen to the desired level.  Much of this morning was spent reviewing the insurance vs. out-of-pocket expenses for the pricey Neupogen.  We finally helped them realize that by the time we pay for the Campath, my deductible will have been met and it won’t really matter.  The Neupogen will be covered.  Just give me the shot.

My numbers had gone up a little.  But that little amount (WBC up from .76 to 1.38 and Neutrophils up from .54 to .97) was enough for me to get my Campath and wait until Friday to start the Neupogen.  I did have to have the IV Benedryl today :( but that should be the last time.  It hurt more today, and I have a bruise.  Friday, I will take my Benedryl by mouth on my way to the office.  So we are back on track.  

So in a nutshell, perhaps a big nutshell but nutshell nonetheless, the Campath does such a good job killing my white blood cells that I will have to take Neupogen injections every time Campath knocks them down.  I have been taking Tramadol to counter the bone and body aches.  Since the main side effect of Neopogen is more intense bone and body aches (because it pushes my bone marrow factory to work harder), I am hoping that my Tramadol works overtime.  Because my immune system is in the dirt, I will continue taking Valcyte to guard against viral infections and Bactrim DS to ward off bacterial infections.  Since most all of these, especially the Campath, cause severe headaches, I will continue taking Flexeril to help me relax and Maxalt to fight the ones that just don’t want to go away.  When all of this makes me nauseated, I will rely on the Phenergan.  Then, of course, I can take all the Tylenol and Benedryl I would like to cover the itching, sleeplessness, rash, and any other pain that hasn’t been covered.  I think I got them all.

Where is my card table?!

Unexpected News! Down for the Count

After the rigors of last week followed by a less intense weekend, Paul and I made our way back to the good doctor’s office to start week two.  Or so we thought.  We were curious to find out how much this first week of Campath affected my counts.  The answer…drastically!  In fact, my white blood count is currently just over 0 at .76.  Yes, you read that correctly.  My neutrophil count (which are the white blood cells that fight infection) is just over 0 at .54.  We were all in shock!  My disease has been a bit of an anomaly since the start.  This only adds to it.

So what does that mean?  Well, first, it means that I didn’t get a shot today.  They couldn’t take the chance of infection.  Next, it means that I am “down for the count”…literally!  I now have no immune system.  I will be susceptible to viral, bacterial, as well as fungal infections.   That means no fresh uncooked produce, no medium rare steaks, no grocery stores or movie theaters, no gardening, no kids, no kissing, no nothing.  And if I do go somewhere or if someone comes over, I will be donning a mask.  (We have tried to find pretty ones but to little avail.) 

I had already planned on asking the good doctor how it is that a little lady, now weighing in under 120, and a manly man, weighing 220 pounds or more, can handle the same 30mg of Campath?  He thought that was quite an astute question, thank you!  :)  I don’t quite remember the entire answer other than the dosages are calculated generically, like Tylenol, etc., rather than by weight.  But it does give way to thought.  So he is going to contact Dr. O’Brien at MD Anderson and discuss the option of a reduced dosage.  We will know Wednesday when we go back to have my numbers checked again.

You would think that at this point they could just move on to transplant.  But the counts in my peripheral blood do not necessarily equate with the counts in my bone marrow.  They will discover that when they do my next bone marrow biopsy. 

We assume (which is not something we like to do, you know) that my counts will go up a little between today and Wednesday since I did not get another injection.  Other than waking up with another headache, which has since mellowed out, I feel better today.  Still very tired and not especially receptive to food, but better nonetheless.  For that I am very thankful.  I have heard of your faithful prayers and appreciate you all so much!

What else might this mean?  We will probably not need the second round.  That would probably put the transplant in April rather than May.  Deep breath.  

I never said that this was going to be a boring ride.  

Moment by Moment

Wow!  What a week!  I must confess that this was not what I expected from my ramp-up week of Campath.  As of my last post, the proverbial truck had run me over.  Since then, it has backed up and plowed me down a few more times.  Thursday evening was pretty bad, and Friday was horrible.  I think I’d rather go back to the chills and fever!

After trying everything to manage the headache and nausea, I finally called my nurse to see if we could try a different drug.  I think I mentioned that my original anti-nausea drug (Granisetron, or Kytril for short) was not only not helping my nausea, I think it was aggravating the headache problem.  When I talked to my nurse, she assured me that there were several other options that shouldn’t cause headaches.  She called in Phenergan, both varieties, if you know what I mean.  One variety works faster and is less likely to come back up.  :/  Good times.  The good doctor also had her call in Flexeril, a muscle relaxer, to hopefully help relieve some of the pain.

Because things had gone from bad to worse, Paul was able to get permission to leave work midday Friday, go pick up my new meds, and be home with me for the rest of the day.  Have I mentioned how wonderful he is lately?!  :)

The Phenergan worked well.  The Flexeril decreased the pain level by about 40-45%, which was huge at that point.  We continued with all my other meds trying to find a balance of what would work.  Fortunately, I slept Friday night.

Unfortunately, Saturday’s sunrise greeted me with yet another headache.  I took my Maxalt (migraine med) and another Flexeril, along with my regular mix.   You’d think I would have been comatose by then with all these drugs in me.  Within forty-five minutes, I was able to eat a small amount of oatmeal and 2 ozs of a mango protein drink.  Ick.  As the day went on, I continued on my regular 3/day Tramadol (pain killer), my two antibiotics, Tylenol and Flexeril whenever I’d feel the headache inching back, and whatever else I’m taking.  By late afternoon, Paul and I actually went for a walk around the pond!  Success!!  Maxalt again at 9pm for the headache that just would not stay away and another pretty good night’s sleep…until the sun rose with yet another headache!  This time I hit it with Maxalt and a little more sleep.  I wanted to try to go to church.  Work with me here!

A few weeks ago, my sweet friend from church, Dian, invited me and her dear friend, Jan, who went through a stem cell transplant this past year, over for lunch and a time of sharing.  Dian’s husband is now in his third bout with cancer.  (Please keep John & Dian in your prayers.)  Jan is successfully on the other side of a stem cell transplant having battled an acute form of leukemia.  We spent four hours together sharing each others’ journeys, asking questions, enjoying a lovely lunch, and ending in the wonderful world of girl-talk, about everything from our kids and grandkids to face cream, makeup, and tattooed eyebrows. :)  The reason I mention this here (I always come full circle if you just hang in there with me) is at one point of the conversation Dian and Jan laughingly recalled how they had to set up a card table in Jan’s post-hospital apartment to manage and organize all the medications.  At that point, I could not imagine needing an entire card table for pill bottles.  Well, I can now.

So back to this morning.  My Maxalt and my body decided to work together and by the time I woke up again, the headache was gone.  OK.  I’ll try making coffee.  Done.  How about wetting my hair and washing my face?  Done.  How about sitting down for a minute.  OK.  Fluff the clothes in the dryer and fold them.  Done.  (If you’re wondering where Paul was at this time, he was still asleep.  Bless his heart.  He is working so hard at the caretaker thing, on top of all his regular responsibilities, that I couldn’t bear to wake him until I was sure.)  So I was being quiet.  Yes, me.  I can be quiet.  So let’s try putting on some clothes and makeup.  OK, but how about sitting on the side of the tub when possible.  Wow, I might be able to do this.  Guess I’ll wake up Paul since I only have hair left to do.  So, after utilizing my new sitting position for fixing my hair, and eating a bowl of oatmeal, I’m ready to go.  I haven’t accomplished that much in any one DAY this past week. 

What a blessing to be welcomed by His people and warmed by the worship of our God.  Thank you, God, for giving me the strength to be with this body of believers who lift You up in praise and hold me up in prayer. 

God often speaks to me through music.  I found it almost humorous that the first song was “I’ll Fly Away”!!  Indeed, I will.  But not this week.  :)  A new song was also introduced.  The first verse started with “Slow me down, oh Lord, slow me down.”  Paul and I just looked at each other and smiled because, as I have written about before, my life had been at a break-neck pace for years.  It seems that when He wants to get my attention I get some weird sickness, which slows me down.  Well, Lord.  This is about as slow as I’ve ever been.  The second verse started with “Clear my mind” and the third with “Wake my soul.”  I’ll take both please.

A nap was necessary immediately after returning from church.  I was able to eat, and now I have been able to write.  This has been a good day.  Tomorrow we start over again.   Please pray that we don’t have a repeat of this week.  If we do, please pray for grace and endurance.  I know it’s only for a season.   We have determined to travel this journey one day at a time.  This week has taught us to take it one moment at time.  Moment by moment, He carries us through.

Moment by moment I’m kept in His love;
Moment by moment I’ve life from above;
Looking to Jesus till glory doth shine;
Moment by moment, O Lord, I am Thine.

Never a trial that He is not there,
Never a burden that He doth not bear,
Never a sorrow that He doth not share,
Moment by moment, I’m under His care.

Never a heartache, and never a groan,
Never a teardrop, and never a moan;
Never a danger but there on the throne,
Moment by moment He thinks of His own.

Never a weakness that He doth not feel,
Never a sickness that He cannot heal;
Moment by moment, in woe or in weal,
Jesus my Savior abides with me still.

Run Over by a Truck!

Considering that we named this blog, Our Journey, I thought that this was a perfect analogy of how I feel.  I have been told before that I tend toward optimism and believing the best.  In that vein, I was convinced that I was going to ride out this first leg without a glitch.  Oh, well, so much for that.

The first day wasn’t too bad.  A little nausea (that I didn’t take the pill for) followed later in the day by light itchiness that made it difficult to get to sleep.  But really no big deal.  Day 2 was when my left arm started hurting, but luckily neither my right arm nor my leg had the same response post injection.  By Tuesday evening, I started having chills and rigors and running a low-grade temperature.  You just can’t make it stop.  I tried deep breathing and willing it away, but it has to run its course.  Day 3 I still had a low-grade temp but everything else went well at the doctor’s office.  By early afternoon, the chills and rigors returned.  Then last evening the chills started again, the nausea returned (and I did take my pill), my head hurt, and my temperature went up to 100.8 and stayed up until sometime after I went to sleep.  I know that doesn’t sound very high, but we’re supposed to call when it gets to 100.5.  So I did.  The on-call doctor said to take Tylenol.  :/  I called my nurse this morning so she could inform the good doctor.

Which brings us to today.  Since I didn’t have to go in for an injection today, I had planned on going grocery shopping and sprucing up around the house a bit.  Yeah, that didn’t happen.  I feel like I’ve been run over by a truck!  Because of all the sweats from last night, I needed to shower again this morning.  It’s really weird to wish that the Campath would make my hair fall out just so I wouldn’t have to wash, dry, and attempt to fix it!  Had to pull a chair into the bathroom to get through it.  I won’t have the blessing of no hair to wash until I get to MD Anderson and take the really hard stuff.  Funny how your perspective changes.

I’ve also lost more weight.  Not surprising because everything tastes horrible.  I can usually out-eat Paul, but not now.  So I am now sipping on a Boost Plus.  Later, I am going to attempt to make chicken and dumplings with the rest of the rotisserie chicken Paul brought home last night.  Here’s hoping.  (He also brought home my favorite flowers…daisies!  What a dear!) 

The encouraging thing is that from all we’ve read, the side effects (other than the suppressed immune system) should balance out once my body gets acclimated to the drug.  I am hoping that’s the case.

I know that it could be SO much worse!  The sub-q injections have much milder side effects than the IV version, so for that I am very thankful.  It’s also almost funny to read about all the various side effects of the drugs given to overcome the other drugs’ side effects.  My anti-nausea pill can cause headaches, difficulty sleeping, dizziness, bowel issues, etc., etc, etc.  The Valcyte can cause back pain, bowel issues, headache, nausea, trouble sleeping….  The Bactrim DS most common adverse effects are "gastrointestinal disturbances" (nausea, vomiting, anorexia), and skin reactions.  And that doesn’t even include the Campath!  You wonder how folks live through the remedy!!  But as a song in the last episode of GLEE exclaimed, “What Doesn’t Kill You Makes You Stronger!”  :)

In your prayers, please add our dear friends John & Dian Sustek.  John has battled cancer twice and this week has entered a third round.  It’s been a long difficult week for them.  Please keep these sweet, Godly people in your prayers.