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!!

Day +13 all good

Good news, Bob’s WBC is up (1400 total white count).  Up high enough that we’re planning to see Connor and Blake today!!!  Not so good news…his HGB & HCT are low enough that he may need a blood transfusion, like today.  So the day we finally get to see the boys….we may spend at the hospital getting blood.  We are sitting here waiting on the doctor to decide if today or tomorrow is transfusion day.

We are always waiting on someone else’s decisions lately.  Why plan?  We have no control.

I’m crabby today.  Tired and crabby.  Bob has a rash all over his stomach.  Bob has not held any food down for two days, it stinks to wake up to the sound of him puking.  I scratched my eye taking out my contacts last night and it looks like my eye is bleeding…hurts too.  My hand hurts from this stupid tendonitis (or whatever the heck it is)….I’m sick of driving to this hospital EVERY DAY… Blah blah blah   I hate cancer.  I hate cancer.  I hate cancer.

What good does it do to complain?  None.  So I will practice what I preach….rejoice in the Lord ALWAYS.  Thank you God that we have today.  Thank you that Bob and mom are alive.  Thank you for loving us.  Thanks for my family.  Thanks for Stan and Teresa who brought me lunch yesterday and took Bob to buy a lottery ticket. Thanks for Cathy who sent me a care package.   Thank you for white blood cells.  Love you God.  Help me to just relax….and hold on….and know that it’s all good.

 

 

Day +12 Our Bracket

Everyone is caught up in March Madness.  Even when we aren’t spending all of our time in hospitals and clinics…we really don’t keep up with basketball.  But…we are keeping up with a different sort of bracket.  When I worked in the Washington University Cancer Center, we used to chart our patients blood counts in a bracket.   >——<

WBC >—-HGB/HCT—-< PLT : this was our bracket, these were the numbers we followed.  Now Bob and I are following this bracket again.  As soon as his numbers normalize……we’re out of our March Madness.

Today WBC 0.7 (700 Holly!) still waiting on ANC…..(absolute neutrophil count; this ANC number needs to be above 500 for Bob to be off of his neutropenic precautions)

HGB/HCT  9.3/26.8 (explains his shortness of breath and exhaustion….may still get blood transfusion this week)

PLT 34 (probably looking at another platelet transfusion too)

So we’re still IN IT….still fighting through our bracket.  But all is well.  Feeling very blessed in it all.

Aimie came by this morning and brought me coffee …. At 730 am on a Saturday. She’s a good daughter.  We are blessed.

Day +11 Engraftment

Katie and Jordan came over last night and fixed me dinner! Love, love, love.

And today is a great day too!  Even though I woke up and cried in the shower.  That’s not an uncommon occurrence though, crying isn’t all bad.  Sometimes it’s a little cleansing.

The doc who saw Bob today said those magic words….we are seeing signs of engraftment.  Blood counts show white cells are growing….Bob has neutrophils!!!  White count up to 200.

Platelets down to 8, so we’re at the hospital now for a platelet transfusion.  Still have a bit to wait for counts to come out of the danger zone, but we see light at the end of the tunnel.  (Rusty always says “I hope that light at the end of this tunnel isn’t an oncoming train!”).   Nope,  no train wrecks this time.  Been there, done that.

Had our usual nurse this morning, love that girl.  Talked about faith and God again.  Good day at the clinic.

Mom…..she needs a good day.  Told me yesterday that she is weary.  Weary.  I hate that word.  This morning she said “I am just finished feeling this way; so tired of it all.  But when I am weak God is strong in me.  I need Him to take over now.”

God hear her, Hear her cry.  Hold her up, strengthen her.  See her faith.  She is leaning on You.  Pick her up.  Lift her head.  I pray for her as Jesus did for Peter–that her faith would not fail.  JC “But I have prayed for thee, that thy faith fail not. ”   God help her to keep beleiving, “Daughter, thy faith hath made thee whole”. Engraft new life into mom today God.  Please.  

i believe.

Fighting Giants

I’ve been reading my Bible every day.  Today I read in the book of Numbers about Caleb.  He went with a group of guys to scout out the promised land for Moses.  All the other guys in the scouting crew freaked out a bit, said that the people of the land were like giants and that they SAW THEMSELVES as grasshoppers in comparison. Not Caleb.  He was ready to go.  He was sure that they could overtake these people and that land.  He had great faith in what God had said.  If God said we could have it, then let’s take it.  Don’t fear.

I want to face the giant (cancer) in my life like Caleb did.  No fear.  And let’s kick it’s butt.   Take our lives back.  I want us to be a family of Calebs.

God promised healing.  I choose to believe in healing.  No matter how hard the fight is, the outcome is sure.  Giants fall.  Caleb’s giants fell.  Goliath fell.  Cancer will fall.

Thank you God for giving is big faith!  Like Caleb. Thank you everyone who is praying for us along the way.  Sometimes I feel like we’re being carried by your prayers and your faith.

 

Day +10 Tired ramblings

A little stream of consciousness here:  Did I sleep at all?  IV antibiotics stopped at midnight, flushed and cleaned the lines, checked the medication book…nothing due until 4 am…took his temp, afebrile…I slept for about four hours there.  Up at four for drugs, down for an hour and back up at 530 to get IV ready again…am I forgetting anything?  Nope, except to sleep!  Need to nap today.

Delayed our drive to clinic, waiting for Bob to stop puking.  I’m gonna miss my coffee stop again.  I could make it at home, but afraid the smell will make him sick.  He does not enjoy coffee the way I do.   Drove to clinic with drugged, fun Bobby again.  I’m too tired to find his ramblings entertaining.  I just want him to shut up.  (I don’t care if we’re late, I NEED coffe today).  I’ve decided that it doesn’t matter how much you love someone, no matter how long you’ve been together…you really aren’t supposed to spend two weeks of 24/7 uninterrupted time together.  I just need to get away for a few hours.  But…we only have a couple more days of quarantine, then I’ll get out for some me time.  Hopefully his other two care-takers (Aimie and Katie took the care taker class with us) will be over their head colds soon and I can entrust his care to them for a few hours.

Did I tell you guys this one yet?  (humor me if this is a repeat…it is the one amuzing thing fun Bobby said today). Earlier this week Bob watched a car pull out in front of me and said, “1 out of 75% of drivers can’t drive”. I didn’t understand and questioned him, he corrected himself, “oh, I meant 95%”.   Uh-huh…this is the drugs talking.  I just laughed as he tried to explain his logic.  (Cindy & Paula—I think it has something to do with osmosis)   Anyway, this morning Bob was complaining about my driving and said, “Don’t tell me you’re one of the 75%!”.   Somehow this makes sense to him.

Counts still low (sorry Holly…white count still ‘preparing’ to jump up…but not yet).  Creatinine still high.  Saw Dr. M today.  He’s not too concerned about the kidneys either.  “We’ll just cutback on a few antibiotics and the antivirals and watch him.  The Creatinine will come back down, it’s just the melphalan.”  woo- hoo, we get to change the IV antibiotics to twice a day instead of three times a day.  = more sleep.

Had a great conversation with the nurse about God.  🙂 she wants to go on a mission trip.  We told her about the awesome experience we had on ours.

Mom is good, really good.  She came over yesterday and visited.  I did not cook her dinner.  We ate ice cream.

I think I’ve rambled enough.  More later.

Day +9

Administered Bob’s IV antibiotic this morning, pushed him to take the good drugs so he doesn’t puke in the car, and made it to the clinic by 9.

WBC 100 today.  HCT 34. PLT 20.  Great bump from PRBCs but not such a good PLT bump.  Oh well….patience.   The fever work- up requires a chest X-ray,  so we get to go visit the hospital again.

The Creatinine is moving in the right direction too, 1.6 today.  The docs are still a bit concerned about kidney function.  We’re not concerned.  We will continue to receive a liter of fluids IV every day at clinic, and now we’ll also give a liter of fluids at home every day.  “Just keep him hydrated”, the nephrologist told us when he knew Bob was going for transplant.  He’ll be fine.  His kidneys are great.  Remember all the prayers over those kidneys?  They have no choice but to perform as God created them to.  Amen

Mom said she and dad went shopping this morning.  Good, that means she’s feeling better.  She’s going to come over today and visit.  yah!!!  I may just cook her dinner.

Weird side-note:  so the nurse that came last night was on-call.  She didn’t act too happy to be there at 11 pm.  Complained a lot about getting calls late at night.  Weird…she was there to help us…Not complain to us.   Do people realize the bad attitudes they carry around are unattractive at the least…and could even be quite harmful to others.  Note to self:  be NICE no matter what.