Tuesday, January 27, 2015

Cycle 3 Begins...

Good Morning!

I was going to update the blog late last night, but fell fast asleep in my chair sorting my endless piles.  I don't think I'll ever get done. 

There is much swirling around in my head these last few days.  Hard to sort through it all.  Not sure which thoughts are first or real or important.

My tree is packed up and gone, though I wanted (needed) it to stay.  My peace was destroyed and the season quickly disappeared.  Long and short story, not important enough to share.  And though I have the most important Light in my quiet hours (and loud hours), I missed the visual comfort of the ambient light.  In comes my daughter...

Have I told you what a blessing she is in my life?  I know I have, and I'll continue to be humbled by that.  She gave me a solution in this beautiful, programmable candlelight she found, and shared.  It was just what I needed, as usual.  My instrument from God... my blessing.  :)

Rob and I tried to enjoy the quiet of the last week before he had to start the third cycle of chemotherapy.  We shared company in some of the television shows we enjoy, ate quietly, breathed a little easier, though we both felt the heaviness in the air.  Last Saturday, I spent the afternoon and evening with Nicole and the children, and Rob and Mike spent some guy time together.  The guys ate pizza and watched Lord of the Rings.  Us girls (and baby Ben) ate a better pizza :)  and just enjoyed our time together.  It was a great period of fellowship and relaxation for all.  We are keeping Rob away from everyone that we can, and it's helped him to stay as healthy and strong as he is, and able to withstand what he has.  




Thank you, Mike and Nicole, for the suggestion.  Much needed, much enjoyed. :)

So yesterday was the day.  Again.


Rob was very quiet most of the morning, though he spent time on Facebook filling himself with the music he loves to search out and listen to and share with known and unknown friends.  He needs to keep the music playing.

The drive to the hospital was very quiet.  Neither of us wanted to go.  We spoke a little yesterday morning about being scheduled for nine treatments in a row, and Rob said, "I don't think my body is going to be able to handle all the treatments..."  I had to agree.  I'm scared, but comforted.  Rob, too.  It's your prayers that are keeping us both in God's peace.  Don't ever think otherwise.  We literally "feel" them.  Thank you...

He didn't ask for his slippers yesterday.  Just left on his salt-spattered shoes and leaned back in the chair.  The bloodline was found quickly, though it had to be relocated to Rob's other arm part way into the infusion of the pre-drugs due to a bit of pain, but mostly swelling.  He slept through most of the two hardest drugs, to which I am thankful.  I am glad God sweeps him away for those so he can be in a different and quiet place.

I take with me each week a bag of things to keep me busy...  books, quilting projects, my camera, doctor notebooks and files.  We get copies of the bloodwork each chemo day so we can keep our own eyes on his numbers, and do what we can to keep him safe for as long as we can.

I pulled out my latest project, well, an older one I'm trying to finish.  I designed and started a series of four "season" quilted wallhangings when my Nicole went in for her brain surgery in Milwaukee back in 2011.  I went with on that initial surgery, with my quilting in tow, because my quilting calms me.  So bringing it to chemo each week is another way to get through the day.  I am happy to say I am on the last one, just finishing up the hand quilting.  Then, I will work on binding them all, with my granddaughter learning by my side.  

Izzy is my quilting prodigy... can't get enough of it, just like me.  When she hears of a friend being sick or injured, she whips out her fabric, scissors, and thread... and in a flash, she has cut-out, sewed, stuffed, and appliqued a large heart for her cherished friend to sleep with.  I love that girl!  Ally is two years younger, but ready, too.  So I will spend lots of loving and teaching time with them as I am able to.

See?  My mind is all over the place today still!

Back to the chemo room yesterday...

A number of months ago I went into the craft store and bought some beading supplies, and made myself a little bracelet that says simply, "Be still."  It is a reminder to me all day, especially at work, to keep my priorities straight.  To stop and feel God's presence at that very moment, and know that He is there, always with me (breathe easier  --  I don't have to handle this on my own...).

While I was lap quilting, and Rob was sleeping quietly, suddenly I had the feeling to stop and just look at Rob.  God grabbed my heart and shook me into the silence of that room.  Instantly I was in tears.  Instantly. 









But I looked at him.  He is quiet.  His hair is mostly gone on his head, and now his eyebrows, eyelashes, mustache, and side-beard are thinning, too.  His veins are getting harder to find.  He is more quiet.  His skin is ashen.  He moves slowly down the halls.  He doesn't want to be rushed in anything.  Can't blame him.

We are trying to remain positive, just at a slower pace.  All of a sudden yesterday, sitting there watching him, it became clear that this was all real.  Apparently, the realness was lost in the busyness.  Sort of.  But yesterday, I saw with new eyes.  New heart.  I prayed right there, right then, that God would envelope Rob and hold him, that Rob would feel His arms around him, that he would be comforted, at peace, and filled with healing cells.  I prayed that the chemo drugs would not completely destroy all the good, too.

I pray randomly throughout the day and night.  For things before my eyes and things in my heart.  For things I hear and things I feel.  I need to talk to my Father all the time... and He is always there to listen and comfort.  Awesome!

I believe in miracles.  I believe in God.  And no matter what happens, because of my faith, I am good with it.  As I've said before, God sees the big picture, I don't.  He is the one in charge, I'm not.  He knows much, I know little.  And no matter what comes our way, God will be loving us and holding us and lifting us, especially with the help of His children.  It's comforting to know that.  Even more so to feel that.   In a conversation Rob and I had yesterday at the hospital, I know he is in a good place in the Lord Jesus in his heart.  That is more comforting than anything.  He is not lost, no matter what.  He is found, and loved... much more than I am capable of.  My heart smiles.

I don't like that Rob has this dark time in his life.  He is a happy guy, one that retains his teenage-hood, and that in itself keeps him in a good place.  I tell him I am married to a nineteen-year-old  --   old man.  He smiles big. :)

Rob has been up for awhile now, on the compy with his music and his good buddies.  It's a good place for him.  His voice is all foggy again, and the headaches returned fiercely last night, even more so this morning.  But he carries on, and plays on...  this Musical Muse, whose strength is to be admired.

The following eight pictures are from a happy day we shared in 2012...  smiles. :)









Until next week, be blessed, love the ones you're with, forgive all the mistakes of the past, and don't be blinded by things that can be fixed.  And, it can all be fixed in one way or another.

Love you all.  So humbled by your care and love in return.  You have no idea...


In Love and In Peace,

Cheri

Tuesday, January 20, 2015

"Cruise Control..." :)

"Cruise Control."

That's what Rob's oncologist said today.  Rob's in Cruise Control, and that's news on the upper side of happy!




Let me give you the details of today's visit...

We first asked her about the mention of findings in the "white matter" of the brain, to which she replied, "It doesn't look like a stroke..."

WHAT?!?  That had never entered our minds!  Arrgh, the things we find out each visit that we had no idea about, astounds me!

It's nothing to worry about at all, they'll compare it next time he gets another brain MRI.  Whew!

As for the chest, pelvic, and abdomen CT...  it seems the chemo worked and didn't work.  I know.  But they call it "mixed response."

Some of the cancer/masses got smaller, some larger.  So, here's the plan of action:

Rob will undergo more of the same chemo, and will have another CT the end of March to check progress.
  • If the cancer/masses have ALL gotten smaller, that would be great, and he could go on a chemo vacation for a while until it starts to grow again.
  • If the smaller gets smaller, but the larger DOES NOT, it means a conglomeration of the cancer is resistant and keeps multiplying, in which case she can try to zap the bad with radiation.
  • And the last scenario we spoke of, is that this cancer will, at some point, become resistant to the treatment and keep growing fast, and will be addressed with other drugs/? at that point. 
So all in all, it was a good visit, because she was afraid it was all going to continue to grow.  She said Rob's body is trying hard to fight this, and we believe that in part is because we are keeping him inside and away from people, as hard as that is, but it's keeping him in a better place through this fight.  So even though some family/friends can't understand why Rob can't come out and play, it's because we want him to stay around as long as possible.

His blood numbers today were a bit better...  WBC at the very low end of normal (but IN normal), all RBC counts still low, platelets up a bit.  He's been off chemo for two weeks now, which is why they're a bit better.  Sugar is way too high, but he has to stop his meds for a few days after the CTs, and that contributes big time to the higher numbers.

The chemo treatments that Rob just finished consisted of 7 weeks of treatment, with a break in the middle.

This time is going to be a tough one for him:  NINE weeks straight with no break, and we will be seeing the oncologist every three weeks.  Rob is going to be pretty sick, and he may or not be able to keep up the pace if his numbers don't stay up, but we are going to handle it all ONE DAY AT A TIME.

Slow and steady, as Rob says.  He doesn't want to be stressed or upset, he just wants to do one day at a time, so that is our plan.


Rob, 2012, just before the cancer diagnosis, powerful
   
So, Rob is in CRUISE CONTROL and driving forward, hoping to avoid all traffic jams... and all traffic, period!  I told the doc that it feels like we're living in the Twilight Zone...  like one long day that is never ending.  So strange to be happy and stressed about steps forward.  

Unless you've been there, this won't make sense.


Rob and I want to thank you so very much for the prayers that you have lifted him with, as we both know what a huge difference they have made in our lives.  God's people are good!!! 

I would like to ask that you please continue to pray for Rob as he starts these chemo treatments back up this Monday...  It's going to be a rough road, but as always, we'll keep you posted.

Love you all so much, 
appreciate you all so much... 
SO VERY MUCH.


In Love and In Peace,

Cheri (and Rob)    

Monday, January 19, 2015

Quiet Waiting...

Hello dear ones...

Well, this year continues to be a full one.  It sure keeps life interesting.

It's the 19th day of January already... but I am still somewhere back in October or November.  I can't keep up with this flying time lately.  I don't know where it's gone, and how it got past me so swiftly.

I sit here quietly at this moment, tree lit, listening to Sarah McLachlan, keeping me in a good and quiet and calm place.  Tomorrow is coming, and I don't know if I'm ready for that yet.

Our tree is still up.  Yes, I know, it's mid January.  But I find myself sitting in the room in the early morning hours, and the late night hours, in the glow of the tree lights... it's keeping me breathing calmly, and I continue to need that.  It may be up for a while.

Those of you following us on facebook know a bit about what happened last week, but I'll briefly fill in the others...

We went to see Rob's oncologist, Dr. B, last Tuesday.  Due to Rob's constant headaches and head pains, plus a couple of other symptoms, the whole office staff was instantly in a flurry trying to get Rob in for an emergency brain MRI.  It seems bladder cancer is known for ending up in the brain.  Dr. B said that if the MRI came back showing no masses, that cancer could still be circulating microscopically, so she would then want to admit Rob for a lumbar puncture, etc., etc., etc.  The soonest we could get in was Wednesday night, and the receptionist told the nurse who told the doc, who called us back to her office.  She said we absolutely should not wait the extra day, but rather go to the ER and wait for them to fit us in.  

That was it for Rob.  Never mind the fact that his immune system is shot and he is anemic, and would be sitting in a cesspool of germs at the ER.  Or that we had a puppy in a kennel at home waiting for dinner.  

Rob told her, "No."  

She said waiting could make the difference of treatment working or not.  Rob told her he would sign a paper that would not hold her responsible.  Neither of them was very happy at that moment.  Rob told her he will live like he wants, and die like he wants.  So, we went home, on standby at four hospitals to get a sooner appointment.  Finally just before dinner time on Wednesday, we got a call to go in a half hour earlier, at 8:20pm.

The brain MRI did not show any masses...  something about the white matter, but we'll get details on that tomorrow.  As for the lumbar puncture, Rob said he's not going to do it right now.  End of that chapter.  He gets to have the last say on that.


Yesterday afternoon and evening I spent with my Grandbabies... reading, enjoying my famous scrambled eggs (according to my Granddaughters), and watching one of my favorite movies.  Benjamin was crying a bit, most likely sensing my apprehension of this coming week, but he had more smiles than tears, and that made for a happy heart in me.  He is growing so fast, and is so alert.  Amazing to watch this beautiful life unfold before my eyes. And my Granddaughters continue to bless my life, too.  Daily!  Hourly!





So back to now...

Rob is doing okay.  He is very pale, immune system shot, still experiencing bad headaches/head pain, tired, more frustration showing than normal, and just not himself.  Understandably.  We realized he not only lost most of his hair (there are just long wisps covering the skin), but his eyebrows are almost gone, too!  It didn't affect the beard or mustache, though the hair is much thinner on his arms and legs.  Very strange, this poison they filled him with.  He told me he is just tired.  Tired of being sick and dealing with everything.  I understand.  He's been handling it all like a champion fighter.

Today we went to Beaumont and had the CT's done on Rob's chest, pelvis, and abdomen.  Dr. B ordered them STAT as well, so we will have the results when we go to see her tomorrow afternoon.  These will tell us whether this second line chemo worked or not.  If the masses are the same or smaller, she said that is good.  Larger, that is bad.

I told Rob on the way home that I was happy we were getting the results tomorrow rather than having to wait the normal week for answers.  This way, we don't have to live a torturous seven days of "what if's" and pensiveness.  

We are going to relax tonight, watch some television or read some books, and just let it all go until tomorrow.  Tomorrow will determine much.  It will determine which direction our steps will go from this point on.

Quick Riley update:
He is over 44 pounds now, 6 months old, nicknamed, "Wildman."  Fitting.  I have lots of work to do in my spare time!  LOL!  We're told he'll have his height by 9 months, and fill out in size by 12 months.  Yikes! ;)  I do love this boy who turns into a snuggler at night. (Rob says he's a kicker and shifter... not on my side! LOL!)

I will be doing a short update tomorrow night with whatever we find out.

I can't tell you how much we love you all, how much we feel your prayers around us, lifting us higher than we can imagine.  It's hard to keep tears from my eyes when I tell you how grateful we are for all of you.  God has blessed us for sure.

I will be praying lots.  In the light of the tree. 

http://youtu.be/oab9giH2cG0
(Amazing You Tube video I love... This song is one of my all time favorites, speaks to my heart with beats so hard... it grips me strong.)


In Love and Completely Wrapped in Peace,

Cheri   


Tuesday, January 6, 2015

Last Scheduled Chemo Jan 2015

I greet you with a hearty hello in this new year!

Rob and I pray you had a safe New Year's celebration, filled with lots of smiles and happy memories. :)  

We are hoping you are NOT experiencing the frigid cold temps that we are.  If you are, we feel your pain!  Brrrrr!!!  Frigid is not even a cold-enough description!

Our New Year has been, well...  it's been interesting!

Rob woke up in the late morning to a very bloody nose  --  everywhere, and lots.  To be expected I guess, because the apartment is dry, and all his blood counts are down, causing him to bleed easily.  So we got everything cleaned up, and spent the day quietly home.  It was a blessing.  And mostly uneventful.  Mostly...

I got this brilliant idea that I would cut my hair and fix what I didn't like about it... I think it's a control issue. ;)  Anyways, the long and short of it (short being the more powerful word here), I paid to get it fixed four days later.

Why four days later, you ask?

On January 2nd at about 3am, our phone rang and minutes later I ran out the door to watch my grandbabies as my son-in-law, Mike, rushed Nicole to the ER.  Turns out her gall bladder was extremely enlarged and badly infected, thanks to two previous doctors not listening to her tell them she didn't feel good and had horrible stomach aches and a pain in her side.  So after a couple of IV antibiotics, surgery, and a balancing act with her heart, BP, and other meds, she is home and healing.  Praise God for these blessings!

I was blessed to be able to care for the children during the day times, calling Rob to make sure he was okay throughout the days.  Mike came home in the evenings so I could go home, then we repeated it until Nicole convinced the staff she could go home late Sunday.  :)

That's when I got my hair fixed.  Well, not until after the battery died in our car...  but Mike saved the day and not only went and picked up the new one, but installed it, all done in a flash!  Another blessing!

~~~~~~~~~
 
So yesterday Rob had his last scheduled chemo of this second-line treatment.  Only one poke (blessing), and rather a quick stay, even though we had a slow start.  All of Rob's red counts (RBCs, hematocrit, hemoglobin) are well below the normal low, his platelets are teetering close to the low end, and his WBCs have dropped down below the normal low.  We have to be very careful about exposure to any sickness/illnesses, and he has to be VERY careful not to cut himself, can't even shave right now.  Okay with me.










Next Tuesday we will revisit his oncologist, who I am sure will rerun the battery of CTs, xrays, and bloodchecks.  We are going to have her try to do the brain scan as well, hopefully at the same time as the other scans, as Rob's headaches do not stop.  He is in pain all the time, sometimes very intense pain where he scrunches up his face and holds his head with both hands pressing tight.  It even makes me hurt.  But doubling the pills has helped to take the edge off when they are intense, so that, too, is a blessing.

Riley is loving the snow, but not liking the cold on his feet when it's sub-zero out there.  I am trying to explain to him why I cannot continue to carry him back to the warmth of our apartment, now that he is over the 40 pound mark, and still growing.  Ahh, always a puppy at heart though. ;)  He and Gypsy are getting along much better.  Most of the time.  She has to stop running, though, because he becomes a Greyhound chasing a rabbit track, and that doesn't go over well in our apartment.  Good thing his body is giving as it bounces off the walls!  But he is happy and enjoying his days, as Gypsy is hers... another blessing for two rescued members of the family.



Some may say that 2015 is off to a bad start on our end, but I would have to disagree wholeheartedly.  

Things happen in life...  sometimes good things, and sometimes bumpy things.  But with every bump and valley, we are lifted back to our feet, as God continues to bless us through so many ways...  our friends and family, time off work, medications that help, support in the very moment we need it (whether financially, spiritually, or emotionally), encouraging words, and the list goes on and on.  

Example:  Last night after getting home from chemo, Rob always goes in and goes to bed because he feels so awful.  I was taking care of Riley, getting things put in order, and talking to Nicole on the phone to see how she was doing and update her on our day.  I hadn't had lunch or dinner, and told her I was just going to snack on cheese and crackers because I was so tired.  As we were talking, my doorbell rang... 

Nicole said, "It's Mike."  
I said, "Why is he here?"
She said, "You'll see. :)"

We hung up, I buzzed the main door, and when I opened our door, there stood Mike with two plates filled with the most delicious warm food for us!  A blessing!  And in a flash, he was gone.  

After getting our wild-child under control and enjoying a delicious meal, I called to thank Mike.  He instead thanked me "for being me."  I started to cry.  (Yeah, my heart leaks quite often these days.)  I wonder if he realizes what a blessing he has always been in my life...

I believe this year will continue to be filled with blessings!  And as much as I'll cry, or hurt, or not understand, I pray I will always remember to stop and quietly step back, and just soak in all the blessings that surround me.  Surround us.  All of us.  So I can keep my perspective. And know I am loved. 

Our time here is so limited, so precious, and I want to enjoy it for all it's worth.  

That's my goal for this year:  To enjoy *life*.  

With asterisks!!!


I'll be back in a week or so with test updates, probably a week or so after that with the findings.  

Good or bad, 
big or small;
God gives blessings, 
to handle it all.

In love and wrapped in His peace,

Cheri


Just a side-note reminder:  I am not able to comment to comments here on the blog... not sure why, but it doesn't work.  But I do listen!
And for those that send me FB private messages, I do not have the Messenger App to see them, and am unable to check online from my tablet (what I'm usually on).  Once I get on my main computer at home, I can catch up, so be patient with me, and know I'll respond when I get back here.  I love and appreciate you all more than you know! 
Thank you for blessing my life so. ♥