Ummmm….a break

So today was supposed to be the first day off in 24 days of coming to the hospital, but Bob woke at 2 AM with a bit of a nose bleed. It stopped, but it did ooze for a good five minutes or so. The nurse in me said, get to the emergency room if he starts to ooze again. The tired wife in me said he’ll be fine until daylight. Once I was fully awake I called the on-call doc and we came in to get a blood draw. Platelets low, to the infusion center for a unit. We’re almost finished….we’ll start our break tomorrow.

I can’t get impatient yet. We’re still IN IT all. We will get a break soon. God….give us a break .
We will run the race to the finish line. No falling down yet. One day at a time.

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Day +18 Spring Break

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Today was our last of the “every day trips” to the clinic. We have three days off! Kind of like our spring break.

Dr M is leaving next week for Mexico…his spring break. When Bob and Rusty and some of their other friends were younger…they used to go to Florida every year for spring break. They were a bit rowdy, and tended to dress up in strange outfits when going out on the town. To this day, when the end of March rolls around Bob reminisces about his spring break outfit days. Bob wanted to dress up in one of his spring break outfits before going today.

He figured today was the perfect time to celebrate…and the outfit was his way of doing so.
I sent Rusty the picture. His only response, “spring break is just a state of mind….and an outfit!”

Dr M and the nurses appreciated his humor. I will appreciate the break.

After Mom’s doctor visit

Saw the doctor with mom…Was prepared to talk to him about whether or not the chemo was working, and if it wasn’t working-why was she going to keep getting beat up with it.  And guess what?!?!  Great visit.  He says her blood work has not shown blast cells since starting this new chemo.  And she can start it next week IV instead of as subcutaneous injections.   So it should be easier to tolerate.  He also says that he couldn’t be happier with the response so far.  One more round of chemo then a bone marrow biopsy again.

So….welcome to my roller coaster.  Was walking into this visit thinking that we’d be talking about why this  chemo wasn’t working (because of some of the comments dad’s been making related to the visits they’ve been attending together), and wind up elated with what I hear.  But again…trying to remain calm and steady through it all.  Don’t want to keep riding this roller coaster of emotions.

Awwwww, who am I trying to kid – I think there is a celebration in our near future.   Thank you God!

Bob day +17…mom Dr visit

Aimie stayed all night with us last night.  She slept on the couch next to Bob’s recliner.  I slept in my bed all night….like a rock!  Thank you Aimie.  Katie will stay all night this weekend.  A good nights sleep sure helps.

Yesterday it felt a little like I was “on the edge”.  The edge of what? Sane and insane?  Sleep and awake? Fear and faith?  Where ever I was it was not comfortable.  A full nights sleep later…all good.  Funny that nothing around us has changed; Bob still has bloody eyes, we still drive to the clinic every morning for counts and doctor visits, still fighting cancer.  What changes is inside.  Something in me rises up again.  Faith, God, the Holy Spirit?  Is it all just sitting there under my fatigue…and when I lay it all down and cry out “help!” it surfaces again.

I am going with mom and dad to see her doctor.  The plan was to start the horrific chemo injections again on Monday.  My question…is it working?  Mom seems so tired, and her blood work is still showing cancer.  Does she need to go through another round of this if it’s not working?  Stan was over last night…he has the same questions.  But the doctors just don’t know.  God knows.  When do you stop getting beat up by chemo?  Is it always such a fight?  Can’t we have one of those miraculous healings?  How about cancer just goes away now?  Can we lay down our weapons and still win?  Or do you have to fight all the way to the end?

Just wondering….but I still believe.  If God says we can have what we have faith for (as long as it is His will—-which healing is) then we will have healing.

Day +16 Wednesday

I’m sick of calling every day a number.  I’d like to get far enough out of this that days are just mon, tues, wed, thurs….again.   But not yet.  Just when I think we’re getting close to normal, this crap sucks us back in.  My Godfather reference there.

Bob’s platelets are not exactly low enough to receive a transfusion, but his eyes are bloody looking and he’s getting some blood when he blows his nose.  So we are at the hospital getting a transfusion.  Had a very rough trip here.  Just walking from the elevator to the clinic (a bit of a trek, but not something he can’t do) Bob had a bit of a coughing fit.  Had to stop in a public restroom and puke.  I stood outside the men’s restroom and guarded the door.  I don’t know what I thought I would do if someone wanted in….maybe Freak out a bit.  That would probably deter someone from entering.  Finally got to the infusion center, he coughed and puked upon arrival.  I’m sure the nurses love to see a patient entering like this.  Drugged him up, gave him platelets, I took a walk.  Down the hall and down memory lane.  Saw the BMT unit where we were years ago.  They’ve changed a few things.  Why do I feel like I want to run away?  I briefly consider leaving him here for a bit and taking off….where would I go?

Okay, back to the infusion center.  He’s stopped coughing, but is wiped out.  The nurse gets us a wheelchair to get him out to the car.  He looks like he has two black eyes, the coughing fit blew a few more blood vessels YUCK.  As I wheel him out of the hospital and through the lobby, people stare.  I want to run away again….but I’ve got this wheelchair, hard to run.

I cried half of the drive home.

Mom sees her doctor tomorrow.  I told her I’d go with her….not sure she wants me in this condition.  God help me.  I called her and she came over to sit with us.  We talked about the day.  She says, “you know we go through this struggle every day and people think that because we’re not falling apart every day that we are okay.  Sometimes we just need to fall apart.  Sometimes when cancer just punches you in the eyes (quite literally) you just need to cry.  As long as we continue to pick ourselves up.”

Psalm 55:22   Give your burdens to the Lord, and he will take care of you. He will not permit the godly to slip and fall.   Don’t let me fall God.

Day+15 high – low

When the girls were young and our family would sit around the dinner table at night, we played a game called highs and lows.  We went around the table and stated our high point of the day, and our low point.  It seems that lately I have lots of highs and lows in each and every day.

Today’s low:  Bob woke up at 3 am vomiting again.  Then puked up breakfast before going to the clinic.

Today’s high:  We saw doctor M today and he cancelled the infectious disease doctor visit.  He’s not too worried about the pneumonia.  Bob’s on enough antibiotics, and has a normal white blood count, he’ll be fine.  And he discontinued the IV fluids in the clinic (minimizing our stay there every day), and he told us that we can have the weekend OFF!  No clinic visit this weekend.  Woooooo hooooooo

After we left the clinic we went to a party store so he could buy a wig.  After trying on mullets, dread locks and Afros, he settled on a punk rocker black one and a beach bum blonde one.  He’s gonna have fun with his baldness.

I’m trying very hard to stay emotionally stable in this high/low roller coaster of daily events.  I think I just need to take it one moment at a time.  Enjoying the highs, and coasting through the lows.

 

Day +14 Holy crap!

Holy crap!  I’m tired.  Yesterday was a big day.   We went to the park with Connor & Blake…with Aimie & Paula too.  Only stayed about 20 minutes, that was enough.

Last night Bob got chills, then a fever of 100.3 and started having difficulty breathing.  I started freaking out a bit…then reminded myself to CHILL.  Then told him to stop it.  Aimie came over, brought some anointing oil and prayed for him.  Fever left, he fell asleep.  When he woke to use bathroom his hair was falling out in chunks.  Called Aimie back over to shave his head (she cuts boys hair with clippers….not a bad job either, she’s Bobs hairdresser now too).  15 minutes later, his head is shaved…Now he LOOKS like a cancer patient.

Slept well all night.  Got to clinic at 8,  and surprise-surprise he needs 2 units of blood.    But first a set of blood cultures and another chest X-ray.   Between units of blood we have to drive to another hospital to see his kidney doctor ( still watching kidney function ), back at PSL for second unit of blood.  Holy crap!  I’m tired.

Just started thinking of getting home and in my PJs….gonna take the channel changer away from Bob tonight, need a chick-flick.  His phone just rang…he answers and says, “pneumonia? Let me give the phone to Kim.”

Chest X-ray shows a touch of pneumonia.  Add another doctor to list tomorrow.  We see infectious disease doc tomorrow.  Same one who treated him 8 years ago.  But this is not the same as last time.

Okay…now the HOLY crap:

Rejoice in the Lord ALWAYS.  My faith will not waiver.  My flesh can cry out all it wants, but my faith remains grounded in Him who does not freak out.  My God is bigger than this.  God does not grow tired.

Isaiah 40:28-31Hast thou not known? hast thou not heard,that the everlasting God, the Lord,the Creator of the ends of the earth,fainteth not, neither is weary?there is no searching of his understanding.29 He giveth power to the faint;and to them that have no might he increaseth strength.30 Even the youths shall faint and be weary,and the young men shall utterly fall:31 But they that wait upon the Lord shall renew their strength;they shall mount up with wings as eagles;they shall run, and not be weary; and they shall walk, and not faint.

oh yeah, and WBC = 2400!!