A Rough-around-the-edges Kind of Day

I am finding these days lately to be filled with apprehension.  Rob and I don't know what to expect.  We find things out we didn't know about.  But the one good thing is that we are learning to roll with the punches.
  
You may remember that Rob had a lot of pain with his first IV chemo treatment last week.  Well, there was still a bit of redness left today, enough to concern our nurse, Julie, who also brought in our nurse from last week, Kim.  They called Rob's oncologist, who called in an antibiotic, just to make sure it's not an infection, as that is not something he needs right now.

Another possibility is that, due to the strength of the chemo drugs, his veins may not be able to tolerate them, in which case they will surgically implant a port to administer future treatments.  So today, they put the IV in his opposite hand, and we are thrilled to say that so far, there was not the reaction we had last week.  Yeah!  Smile!

They checked Rob's blood again today just prior to starting the chemo, and all looked good to go.  Apparently, today's IV (and next week's, too) will be the ones that will start causing his "numbers" to fall... red and white blood cells, platelets...  So I will be keeping him sequestered and sanitized even more than before.  I am the army surrounding him, and I will fight to protect him.

It was a shorter stay at the hospital today, because there were only two IV bags, along with the potassium drips before and after.  We spent the time reading and talking  --  and taking more pictures. :)

Rob's been experiencing increasing nausea, even with all the meds he's on.  The heartburn continues, but not too bad.  And he's so tired.  So tired.  When we got home today, he laid down to rest, and didn't get up until after 7pm.  When he came into the kitchen, he said he felt like he just smoked a whole pack of cigarettes non-stop.  He said he felt, "dried out and crispy" inside.  No energy.  His voice has changed... it has a bit of a raspier, more airy sound than normal.  For a while now.  And I can tell by the inflections in his voice that the struggle he's having with recall are upsetting him, to say the least.

The other day he looked at me and said, "They better not be killing me."  He says he can 'feel' all of these foreign things in his body.  He doesn't feel 'right.'  (O, Lord God, please take away the fear and the poison and the anger and the monster.)

I told a family member the other day, "This is not where we saw ourselves, not even anything we could have imagined in the life we had planned."  And it's not.  

But we have to look at this differently.  

Although it may seem bad and scary and heavy on the outside (and yes, sometimes on the inside), it's the struggles in this life that make us stronger.  They help us to learn, they help us to appreciate and love, they help us to help others in compassion because we've walked the walk.  And we'll be better because of it.  We are not here for ourselves.  

I will, I'm sure, still have those times in the quiet where I can't stop the tears or the fears.  But they will be times where I don't blame God or get angry, but rather curl up in His arms and rest.  And He will rock me, and encourage me, and comfort me.  And then stand me back on my feet, stronger than before, and urge me to go out in love.  And I will.

So we don our armor, and dare this Goliath to try and break through.  And in all this, we smile.  Because we are still here, together, and even in this battle for life as we know it, no matter what, we win.

Please keep Rob in your continuing prayers for strength and for healing, for a positive outlook, and for peace.  God-washing peace. 

It means everything to us both.  Yes... everything.

In Love and In Peace,

Cheri ♥     

Oncology Update

Well, we had our appointment with the oncologist today as a follow-up from the first chemo treatment last week.  We'll be meeting with her every Tuesday for at least the next four months.

After waiting for an hour and a half in the waiting room, and Rob blood-letting four tubes of blood, we finally had a chance to talk with the doctor.  She was able to answer some more questions we had about vitamins and OTC's, and we talked about side effects and test results and upcoming appointments.

An older pic, but my same view this evening.
♥

Rob is, all in all, doing rather well.  Although it is much quieter now in our home than it used to be.  I generally like the quiet.  But sometimes, this is more of a quiet fear place.  I don't like it there.

Rob is tired, he sleeps a lot, and he is in thought, deep, a lot.  He is sleeping on the couch next to me now, sitting up, with the cat curled up on his arm.  She's never far from Rob.  She's his little shadow.  Or rather, he's her big servant.  It works both ways. :)

Rob is having some lingering difficulties with nausea, heartburn, other digestive problems, fatigue, memory recall issues, and today, there was a small bloodclot in his urostomy bag (which the doctor is keeping an eye on).  We were given some remedies (more drugs) to help him.  Some are working.

Rob has lost a few more pounds.  He is struggling with the feeling that he's not as strong, physically, as he was.  I am assuring him this is just temporary.  I am believing that.  I know it's hurting him to see me taking out the trash and shoveling the snow and putting gas in the car... I can see the mental-wrestle in his eyes.  I am assuring him it's all okay, and it's all temporary... in the big picture.  I am a strong woman... just tell me I can't do something, and I will try really hard to prove otherwise.  Not always a good trait, but it's gotten me through many years when I needed that mindset...  When I needed to convince myself I could do something that I really didn't believe I could.

On a side note, I must say that we are becoming very proficient at handling the surgical changes.  We seem to be quick learners.  We are a team.  And it's all going to be okay.

Chemo day number two is Thursday.  He handled the big dose very well according to his bloodwork today.  The next two treatments are only with one of the two chemo drugs.  Then the next big-dose day will be at the start of round 2 (and 3, and 4).  I hope all these days go by fast.  But slow, too.  Fast in terms of the treatments and drugs and side effects.  Slow in terms of being together in this time.

So, we march forward in hopeful promise.  Armed in peace and wrapped in prayer.

And surrounded in His grace and love.

Always.  Forever.

In Love and In Peace,

Cheri ♥         

Beginning, Round One

Yesterday was the first day of the first round of the 'drugs' that are giving us hope.  And we are thankful for the opportunity.  Thankful for the hope, especially after the bumpy journey so far.

We left for the hospital at 7am, and were back home somewhere around 3pm.  It was a long day in a slight way.  But mostly, we kept it light-hearted and we kept it full of smiles.  We needed to.  We were strong on the outside, but still a little shaky on the inside.  This is big time now.  This is real.  And we're in the real whether we want to be or not.

 
 There were a total of six different IV drips, all taking different times to wash through Rob's body.  Two of those were very large bags of water, to help flush out his kidneys.  One of the chemo drugs he received can cause permanent kidney damage, so they really try to flush it out to help protect the kidneys.

We took a lot of pictures to document this day, so we can look back at them and remember it all.  Rob kept his sense of humor, as always, and joked a lot with the nurses and with me.  We talked, we laughed, and sometimes, we just looked deeply at each other.  Quietly and instantly exchanging so many conversations that we just couldn't say out loud.  

Once the actual chemo drugs started, they were causing spasms in his mid arm.  He found if he held his arm up, the spasms weren't quite so bad.  The second chemo drip was much more painful, causing bad spasms in his arm... but he was really strong through it all.  And kind.  And gentle.  As always.

We were blessed that Rob did really well last night in terms of side effects, with this first dose.  He very quickly developed that common metal taste in his mouth, that almost seems to worsen when he tries to drink water or eat food.  By the look on his face, I wish I could make it better for him.  He added some of the Mio water enhancer, which helps a little bit.  But the metal seems to overshadow any other tastes.

Last night Rob started showing signs of confusion, really struggling for words in our normal conversations.  And that continued througout today, too.  He's also had slight nausea all day, but is controlling it with meds.  He napped several times as the fatigue always wins over energy lately.  He is sleeping beside me right now... peacefully.  I like to see him at peace, without those worry lines he tries to hide behind his smiles.

They say his platelet count will be at it's lowest about days 14-21, and I know that will take it's toll on how he feels.  But I hope not.  We meet with the oncologist every Tuesday so he can be monitored, and will have his hearing screened every 6 weeks to check for hearing loss.  And then the chemo is each Thursday.  It's too much sometimes.  Too much to know, and to much to remember.  But God is lifting the burdens and wrapping us securely in your prayers.  And at this moment in time, all things are good.

We are keeping people away right now, throughout these rounds of battle, and keeping Rob away from the public as much as possible.  The unfortunate thing about chemo killing the cancer cells, is that it also kills all of his good cells... his immune system, his ability to fight off infections.  He is already at a higher risk from having the surgery, and we don't want to take any chances.  We are constantly washing our hands, sanitizing the handles and knobs and tops of all things touchable.  I am doing my best to protect him.  And it never feels like it's enough.  But I'll keep trying.  

I want to be witty and wise, and fill you in on details, but I've already fallen asleep while typing this at least 5 times so far. I am usually up so much later than this, but I am fully and completely exhausted this snow-filled night.  So before I type some indistinguishable thought,  I will wish you an evening of fulfilling rest, and a tomorrow that gives you heart-fulls of smiles.

This is a beautiful song my daughter shared with me recently by Beckah Shae, called "You & I."  I find it beautiful, wrapping me in things I need to be wrapped in.  I hope you enjoy it, too: 

http://youtu.be/k7jEQ8TovA4

In Love and in Ever-lasting Peace,

Cheri ♥           

Chemo Starts Tomorrow...

In a flurry of activity and phone calls and missing orders, they finally have the chemo schedule set:  tomorrow is the day.

Let me back up a bit...

We met with the oncologist yesterday (Tuesday).  In fact, we will be meeting with her every Tuesday, to monitor blood platelet counts, amongst a myriad of other things.  No doubt.

When the doctor came in she said "Good News!" and proceeded to say everything was good for the chemo to start, and that no large or obvious masses were found anywhere else.  Yeah!  However, just so you know, when we requested a copy of the test results, the scan showed that he has "bilateral hydronephrosis, greater on the right than the left."  In other words, both kidneys are slightly enlarged, more-so the right kidney (the enlarged left kidney is part of what flagged Dr. Jafri into believing the cancer was beyond stage 2 in the beginning).  Also, there is a "...3-4mm ground-glass nodule in the upper lobe of the right lung."  The CT Rob had was not precise enough to determine what this nodule was composed of.  He would need a "thin-section imaging" done to know for sure.  Either way, both of these had recommendations to be followed up on, and we (Rob and I) believe starting the chemo soon should help.  Just our opinions. ;)

Rob's hearing test showed mild loss of high-range sounds (those darned head phones!!!), and he has to be checked every 6 weeks throughout chemo to watch for additional hearing loss (I think I mentioned before about one of the chemo drugs causing permanent hearing loss).  The audiologist told Rob, "Absolutely NO headphones throughout chemo!!!"

And back to now...

Tomorrow marks 6 weeks since surgery, the magic date of when chemo is to have begun, in order to give Rob the best chance of survival.  I have been frantically following up with the doctor, then the hospital, and the doctor again... until finally, they got approval to fit Rob in tomorrow, in the nick of time, to begin a new chapter.  Ahhh, yes... God is constantly reminding us that He is in complete control.

Tomorrow will bring a chapter of changes.  A chapter filled with side effects that will bring Rob to his knees, that in turn will help him to rise.  I wish I could take it away from him.  I wish we would wake up and have it all be a scary nightmare.  But it's scary reality.  Only scary because it's so unknown to us.

We're prepared  --  as best we can be.  We've read all about the drugs they'll be circulating through Rob.  We've read about the side effects and we have a plan of action to confront them.  We've packed books and such to occupy the stay at the hospital.  It's not 'inpatient' and it's not 'outpatient' but rather what they call 'short term stay.'  They are expecting tomorrow's initial cocktail to consist of both chemo drugs and last about 6 hours.  The next to treatments in this first cycle will only have one of the drugs.  So we're told.

Stock photo... but I'm envisioning us. :)

Rob should finish up all four rounds by mid-June.  Summer.  Which seems like forever away since it's snowing and frigid this evening.  But we're prepared to fight this battle, we're prepared to fight hard.  And we're keeping a victory dance playing in our heads!!!

I'll be with Rob for each oncology appointment, each chemo treatment, and for some long hours following each to make sure he's okay.  After sitting in the hospital for 15 hours a day, for almost 9 days... 6 hours should disappear in a flash!  We're hoping.  This is a space in time that we want to go fast.  Real fast.

So... we have to put on our grown-up faces, pretend like this is all okay, and head out in the morning of a new day.  

But there is that peace.  That mounting, beautiful, comforting peace enveloping us.  And in a strange sort of realization, it's all okay.  As my daughter reminded me this morning, recounting an experience with Josh McDowell years ago, our lives are like a maze.  We can only see ahead to the next turn.  But God is over it all, He sees it all, and He will direct our paths for His glory, for our good.  He sees the big picture.  The whole picture.

And we really are good with that. :)

Please continue to lift Rob high in prayer for healing, for strength, for rest, and for him to keep his crazy sense of humor shining bright throughout all that is coming.  He needs to keep his smile.  It looks so good on him.  Always has.  Always will.

Thank you so much for all you have done to fill us so completely... so completely full of love, safety, comfort, prayers, and that beautiful, quiet calm.

In Love and In Peace,

Cheri ♥                

 

Soon We'll Know

Tomorrow is almost here.  Another tomorrow in a list of days that come and go in a flash, and disappear into eternity.

This new tomorrow will give us the results of the pre-chemo body scan, and find out if they've figured out a way to help us with getting the needed chemo treatments.  And after that, we will be at the Social Security Administration to speed our application for review due to Rob's diagnosis, rather than waiting the usual processing time  -  per their request.  It's going to be a full day within those morning hours.

Are we ready?  Maybe not completely ready, but resigned.  It's like Rob is being led down an unknown hallway, and I'm close behind.  And we're trusting that we're in the right place at the right time.  It's quiet, and amazingly calm.  Although I've noticed our breaths are coming quicker.  And we're learning how to say so much by just looking at each other.

Rob is my comforter, my protector.  Even with all he's going through.  Yesterday, I had a bit of an emotional breakdown, and sobbed for what seemed like hours.  I told him I'm not strong, and that I'm scared.  He helped it be okay.  He helped me be okay.  Like he always does.  And I spent the day in my quiet zone, and prayed, and recharged.  My strength returned to be the wife I need to be, I want to be.  Thank you for the prayers surrounding us both.  You have no idea how they are protecting us, strengthening us, helping us to cope.  

Even though Rob has not regained all of his strength, and though he spends much of the day sleeping, he still has his wit about him, his goofy sense of humor, and most importantly, his laughter and the smile that lights him brightly.  He still makes me laugh all the time, even when I'm falling apart.  And it helps to pull me back together.  Pull us back together.

He is gaining back some of his weight, as his appetite has been returning more each day.  That's a good thing if you know Rob! :)

We spend some afternoons and evenings watching old classic movies and catching up on TV shows in our DVR system.  It's been fun being able to do this together, even if one (or both of us) nod off here and there. 

So, though we are still without a refrigerator (another long story for those who don't follow us on facebook), it was still a good day.  We count our blessings all the time, even if our focus strays in the chaos here and there.  When we just stop and rest in the 'now' of life, we are truly thankful to be blessed as we are.  Blessed with family, blessed with beautiful and loving friends (some which we don't even know yet), and blessed with so many good things that are working in our favor.

What I feel us doing in my heart... (stock photo)

We just need to keep our focus on high, rather than on low.  To see our future with new eyes, not old ones.  To always live in hope and in joy... in the moment.  For each moment matters.  So much.

I'll update more tomorrow night with what the day brings to us.  

Until then, really be blessed.

In Love and In Peace,

Cheri ♥        

Just Waiting...

Yes, the waiting game continues...

You would think we would be getting impatient with all the waiting in between tests and appointments, and pokes and prods.  But we've come to savor the time.  Time.  Everything is revolving around time...  realizing how much of it we've wasted, how much we've taken for granted, how much we didn't breathe in all of it for what it was.  In reality, you never think it's going to change.  Sometimes it doesn't.  But sometimes it does.

Rob went in to Beaumont last Thursday for a body scan to see if there is any noticeable cancer that has spread, and also to have a pre-chemo baseline hearing test.  We'll get the results on Tuesday when we meet with his oncologist again.

We arrived for the scan first, and they gave Rob two large glasses of water to drink.  He took the first swig and said that it tasted really strange, and he thought they gave him the wrong cups to drink.  So I tasted some of it, too.  Blah!  Well, I shared in his intial drinking of the "contrast" for the scan... not good!  Oh well, so I glowed for a bit. ;)  They ended up giving him dye through an IV, too.  There was a long wait, but the scan itself was amazingly quick.

The hearing test revealed that some of the high-end sounds have already disappeared for Rob.  He tried to attribute it to age, but the audiologist had a long, drawn out, "Welllllllllll......." and told him not to listen to his music quite so loud!  I had mentioned before that one of the chemo drugs has the capacity to take away his hearing, and it will not return or be helped by hearing aids.  This is really upsetting to Rob, as he loves his music so.  She told him that while he is undergoing chemo, that he is not to wear headphones at all.  Nothing that will funnel the sound directly into his ears.  Neither of us knew that about chemo before.  We are still learning.

We have had to apply for all types of help in paying for the medical bills: past, present and future... as well as ongoing supply costs.  It is really humbling.  There were several days where I was in tears on the phone, not feeling able to find the strength to jump through all these hoops.  But both Rob and my daughter, Nicole, helped ground me, and they had me take a few steps back, and do one thing at a time.  Everything is filled out, all t's crossed and all i's dotted.  It's out of our hands for now.

Having to fill out the SSA adult disability forms (needed to be done in order to continue on with other organizations trying to help us) was heartbreaking.  Rob was laying on the bed as I read the questions to him that we had to answer.  One question was in regards to knowing that this cancer will eventually end in death.  That was a hard one to swallow.  And even though that thought is in our heads, we didn't want to have to stop the thought long enough to actually let it sink in.  But it did.  And it hurt.

Rob is quiet a lot now.  He sleeps quite often throughout the day and after exerting himself at all (like showering).  I was going to say that he's having small passages of anger, but it's not really anger.  It's more like frustrated reality.  He is fully surrounded and being lifted by your prayers, as he continues to smile and joke, and enjoy his music.  He wouldn't be able to do any of those things on his own right now.  So I thank you for giving him that strength and inner peace.

I am returning to work this coming week, and the thought of being away is very hard.  I just want to be with him all the time, to make sure he's okay, to make sure he has what he needs.  But I won't be far, and I won't be gone too long.  And we'll keep checking in on each other for sure.    

We will find out much more on Tuesday... more of what life is going to be like for the near future.  And regardless of what we hear, it's going to be okay because we're going to be together, and we're going to keep fighting this crazy war we're stuck in... one day at a time.

Please let your prayers surround Rob like armor, to keep him both strong and protected for the days and weeks and months to come while he dines on chemo cocktails and meds to counteract them.  Pray that he is heartier than the cancer, and that is body is free of that menacing monster.  Pray that his sense of humor remains intact, and that he never loses his smile.  Please, just continue to pray for him.

I will update after our visit on Tuesday.  Until then, please enjoy every minute of your time.  Look around you and see the beauty that life brings your way, even in the smallest of things.  

And be the blessing that you are.

In Love and In Peace,

Cheri ♥