Rock On Rob... ♥

Hi.  
Early morning hours again.  Peaceful.  
Time to think even though I should be sleeping. 


Rob was admitted to Beaumont Hospital on December 2nd for extreme pain and numerous other medical issues.  He was released on December 13th.  By the 15th I knew something was very wrong.  He went into another extreme pain crisis with confusion and hallucinations, and was readmitted through the ER that Sunday. 

He is hopefully going to be released later today sometime... into home Hospice care.

Dr. B, Rob's oncologist, said the cancer is aggressively moving, and that any further treatment at this point would do nothing but lessen his quality of life.  Rob doesn't want that.  Neither do I or any member of our families.

Rob is handling the news with more ups than downs.  As Dr. B explained, most people diagnosed with stage IV aggressive bladder cancer have an expected life span of about 12-15 months.  It has been 6 years for Rob.  He has not presented as most cancer patients have.  Throughout these years, I have documented dated photos of the odd phenomenons that Rob has experienced... progression of the C monsters prowling and raging stages.  

Dr. B has copies of the photos and is presenting them to her peers continuously.  Many of them have questioned her as to why she ran these other tests that ended up being crucial to Rob's cancer treatment, and she explained that because Rob wasn't following the "norm" that she questioned everything he went through.  Dr. B told Rob that this information is going to help future generations in dealing with bladder cancer and finding a cure.  Rob said, "I just knew this was for a good reason", and we thanked her for all she has done for both Rob and I, and both of our families.


Rob wants you to know that he has not been "battling cancer", but rather has learned to truly live through it.  


He is strong amid the physical weakness, and has kept his sense of humor throughout.  The nurses in the short stay and on the oncology ward all love him.  He is kind and gracious, and has grown so much internally and spiritually.

In respect for Rob and his privacy, he does not want any visitors.  He just wants to be home now with his family, pets included. :)  He will continue to play his music online and post his Rob-isms as he is able to.

The hospital bed and numerous other medical equipment are being delivered hopefully before noon today, all having to be in place before they will release Rob into Hospice care.

 
It's funny.  Strange funny.  But as we have been talking the last few days, there is a peace surrounding him, and it's seeping into me.  A peace that lets the stress of appointments and pokes and prods and tests and constant running start to dissipate.  The shared stress-based angry words disappearing into the dust.  The feelings of not being able to fix things and not being enough are fading. We are breathing easier, fuller, and looking forward to spending unrushed and unmedical time together for as long as we are able to.

Rob and his sister, Holly, and brother, Stu, have been able to have some lovely sibling time gathered around Rob's hospital bed, entertaining the staff and neighboring families.  Singing songs together, sharing meals and traditions, laughing over past and present moments in time.
Our families have been such a strong support system, we can't even begin to tell you how deeply they have touched our lives.

And your prayers...  Oh, your prayers have helped in ways you will never know.  They are everlasting blessings washing over us continually.
My cup runneth over. 

There are tears, but they are far outweighed by laughter and peace.

Rob knows where his peace comes from  -  Whom it comes from  --   and he knows where he's going.  It is a much better place, joyous, everlasting, and best of all, pain-free in every sense of the word.

So we wanted you to know.

And we want to thank you for your prayers, your kind words, your gifts... all of your beautiful expressions of love over these last 6 years.

I pray that you would continue to lift Rob, and all of us, during these coming days.

We love you all, we are thankful for you all... and we pray God blesses you and your loved ones with this Peace that surpasses all understanding.

Please... don't let things get in the way of people and of relationships.  Stop the constant input, the surgence of technology that surrounds us and drowns us.  Texting instead of talking.  Faces in the phones.  Please stop... Let's get back to living. ♥
  
People matter more.  Make sure your people know they matter to you.


Rob and I wish you and yours the most joyous of Christmas celebrations, surrounded by loved ones and laughter, praise and worship, as we celebrate together our Lord and Savior, Jesus Christ, Who offers us the free gift of eternal life with Him.

Merry Christmas one and all!!!

In overflowing love and peace,

Cheri ♥ 

Long Time No Blog!!!

Hello.  Yes, long time no blog.

I have been respecting Rob's wishes to privacy since the last blog, going on nearly two years ago.  I am doing a short update tonight with Rob's blessings.  Not many new photos, as most are on my phone and tablet.  My main computer crashed months ago, but I got most things back thanks to an awesome techy guy my brother-in-law put me in touch with.  Thank you, Stu!!!

At 10pm last night I sat in the quiet waiting room on the second floor at Beaumont Hospital as they took Rob back for an MRI that was expected to last at least two hours.  I had a bag of my "piles" packed to sort through, a cup of coffee, and hopes of staying awake.

Moment later Rob and the technician came out and said they couldn't do the MRI because Rob was in incredible pain, and they would have to try again with him sedated.

Then today we left at noon to go see Rob's oncologist, and just got home in time to feed the pets their dinner.  Rob was in so much pain in the car, that he was nearly in tears, and I don't think I've ever seen him cry.  He's big and strong.  He's the Eveready Bunny.  

The traffic caused an hour + trip, and his leg pain was so intense... I prayed most all the way home for his pain to stop, and sang the praise music on the radio to calm him and keep me filled with good.

So let me go back a ways and catch you up...

Rob was diagnosed with what turned out to be Stage IV terminal, aggressive bladder cancer.  It had gone through his bladder wall and into the lymph nodes all throughout his abdomen and pelvic area.  He had two different surgeries to find this out, the second of those major with life-altering aspects.  

At that time, Rob was given about a year and a half.  Six years later, the story continues...  
He has been through so many rounds of chemo that I have lost track without looking it up.  He went through all the options he had, even trying an immunotherapy option...which usually offered relief for up to a few years.  But after 8 months it quit working, too.   

The next option was to try a new chemo drug thought to possibly help, but not specifically for bladder cancer.  The two times Rob took it at the beginning of this year, he had horrible allergic reactions to it, ended up being hospitalized for 9 days then another 6 days, and walking out of the hospital on cardiac meds after having to have his heart restarted a couple of times.

In July after watching a bruise-colored rash starting to spread across his thighs and abdomen, we were referred to a dermatologist who did a biopsy from his thigh and from his abdomen.  The doctor called me at work a day later, very sad, and said both came back infiltrated with cancer.

So now the cancer is in his bloodstream and circulating, hiding in places we don't even know yet.  Rob had a port inserted into his chest wall in July because his arm veins are pretty much shot.  He restarted chemo treatments with the original chemo he had in 2013, only with a change to the second drug because he was no longer strong enough to tolerate the original.  It has held the Monster at bay for a while now.

Bad pain in Rob's thighs and back started initially probably around August of this year.  At first, it was the skin being sensitive, sometimes the muscle hurt, sometimes he said it felt like it was really deep, like bone level.  It has been coming and going, shifting from one thigh to the other, and his lower back has worsened, though it was hard to tell since he had a back injury as a young lad.  Now the pain is almost always constant, he walks very slow and determined, wincing in pain with each step or sometimes with no movement at all.  He adamantly refuses a wheelchair when offered, saying he's just not going to do it.

Today, Rob's oncologist, Dr. B, told us that the last CT showed something going on in his thigh, and the recent bone scan showed something going on in his lower spine.  She ordered a new MRI, under sedation, with and without contrast, on both thighs and his lower spine, to take place this Thursday afternoon.  My Sister Bear, Rob's sis Holly, has been the one helping me keep my sanity and job, by taking Rob to many appointments, treatments, misc. doctor trips...  Holly, I would be a puddle in a dirty alley somewhere if it weren't for you.  I love you dearly. ♥

This afternoon Dr. B stopped all further chemo treatments, because if he is getting a mixed response, the pain is going to continue to worsen and travel further down.  And she said she is not giving him good quality of life by continuing as we were.

She also added a fourth very strong pain medication hoping to give Rob some relief.  She cannot up the dose of the current ones for fear of liver damage.  If the cancer has spread, she may try doing radiation on his thighs, etc., though he has been opposed to radiation after researching it.  Time will tell.

So we are just going to continue playing out this story until there are some firmer answers on how best to proceed.  I will update after we see Dr. B in two weeks.

Your prayers for pain relief would be so appreciated.  I feel so helpless not being able to take the pain away.  I hear him moaning during the quiet hours of darkness, and I hear him up in those hours adding whatever OTC things he can find to try and help.  

I feel like Super Woman with a cracked cape.  But I dress each morning in my big-girl clothes and cover the scared little girl inside who still doesn't know how to fix everyone.

But God.

He is my Strength, my Portion, my Reason and Ability to function.  It is His arms holding me upright, His voice keeping me steady, His plan for me under construction.  And without all the ongoing prayers from family and friends, my life would be impossible.  I can't do this alone.  

My power comes through Jesus.  Hallelujah...Praise God!

I will be back and update you on family, Riley, the whole crew.  For tonight, I am tired, and have much to do before I sleep.


In Love and in Peace,


Cheri ♥

My lovely little heartsongs, and their parents! :)

Hello... and Thank You... Until Later :)

Time.  

Us, 2015

It's flying by, like the snowflakes outside my window this windy late evening.  I've been listening to the wind all night, thinking about how nice it would be if you could open up your mind and soul and let the winds in to blow all the old and crinkly leaves away.  

Ahhh, late winter hours make me think more.  Deeper.

It seems like forever ago that I last updated this blog on Rob.  I was going to do it before Christmas, but life got in the way, and, well, you know how that goes.  We've spent many hours in the hospital, in doctors offices, in the emergency room, being admitted.  It's a way of life that was not in the choosing, but one we get strength to handle.  Often.

This will be the last blog... probably for quite a while.  I will update you now, with Rob's blessing, on where we are in his journey.  And then he just wants to privately and quietly live his days as normal as he does, enjoying and posting his music, chatting with old and new friends on FB.  I get it.  "There's a time for every purpose under Heaven."
 

One of my favorite pics of Rob, 2010

So this is where we are in different areas...

We saw Rob's oncologist, Dr. B last week after getting an abdomen/pelvic CT the week prior to that.  The cancer is growing, and the chemo is not working any more.  So the good news is that Rob can finally stop the chemo.  That didn't hurt his feelings at all. :)  The last few doses hit him pretty hard and it was taking longer for him to recover enough to do it again the next week.

Dr. B wants to try Rob on a new antibody  --  immunotherapy.  It's been targeted for a different type of cancer, but she wants to give it a try.  It will only be once every 3 weeks, for a shorter time duration, for 3-4 treatments then CT's to check.  More news that made Rob smile.  However, prior to being able to start this, which they went ahead and faithfully scheduled for March 13th, Rob has to get a chest CT to see if the cancer has grown there as well, and also get an "okay" from his liver specialist.  This drug has side effects that can trigger autoimmune responses  --  during and any time after taking it  --  and can attack normal cells in the body (liver, colon, lungs, pancreas, skin, eyes...).  Needless to say, he will be monitored well.

If you may remember, back in Spring 2015 they had to pull Rob off chemo for about 15 months because his liver was ready to shut down.  But it got better. :)


So we wait, making endless phone calls to set appointments that don't seem as important to the answerer as they are to the caller.  I will try more on Monday when my mind is clearer, and my hurry is calmed.  My hurry feels pretty strong some days.

The hospital called earlier this week and said since the new drug is experimental-of-sorts, our wonderful four-lettered insurance company will not pay for it.  And it's thousands of dollars.  Thousands.  But our favorite, hard-working people of Beaumont are calling in all the stops with drug companies and more, trying to get it for Rob.  They are awesome there.  They have come through so much for us, that there just aren't enough words to thank them.  All over that hospital.  Awesome.

We had quiet holidays as Rob was not feeling well most of the time.  I visited with my family and they fill me with love and hope and smiles and hugs to last me until the next time we gather.  Rob's family shared in Thanksgiving with us and Colie and family again this year, and it was a joyous and fun time together.  They are loved much and they bless us continually.  *Kiss* :)

My daughter has had many ups and downs as well.  Seeing new specialists in Ann Arbor and trying new meds to help with the Chiari and all the accompanying neurological difficulties.  It's been hard on her.  She has a walker and a wheelchair now to help when the days get rough.  She is so strong and courageous and filled with love and hope and Jesus.  Her husband and children, too.  I learn and learn and learn from that beautiful child of mine.  They have all blessed me beyond measure.

I was hurt in my heart by someone I thought I knew, but apparently never really did.  Funny how you learn that so late.  But the hurt still remains even as you let go.  And tomorrow is a new day.

I had last week off work and it was SO needed!  Rob had 3 appointments, and I didn't really do much.  I cleared some piles and got through some sticky notes.  I dozed often, and finally finished the wall-hanging I made in honor of my Darby-girl.  It was from a nice photo I have of her, and is surrounded by colors and images of flying geese, sandy beaches, and the waters of Lake Huron where she was born and lived most of her life.  She loved up north, so I honored that.

 
I most enjoy handwork when it comes to quilting, and in an early-American, wonky-kind of way.  The applique I will work hard on, but the rest is done in a fun and relaxing way.  It doesn't upset me if things aren't straight or exact, because life isn't.  And though I appreciate the beautiful quilting that people do these days, I prefer to hand quilt each stitch... uneven stitches suit me just fine.  I want it known that my pieces are handmade, that time and passion and work went into them slowly and with care, on my lap and in my hands.  I tire of progress some days, and long for life in a little cabin in the woods on a nice chunk of land, fireplace for heat and no cable, internet, or telephone.  Just time.

There are nights when I am up into the wee morning hours, times I only sleep 3-4 hours before putting in a full work day.  And times when I fall asleep in Bible study and church and in the middle of a conversation with my daughter.  My doc, last fall, told me something had to change before I imploded... so I moved to a new bank with new people and worked part time.  For two months now.  But my ladies at my old bank, my family, my support, were terribly missed in my heart.  So I wrote a letter to my old manager, and she pulled strings and got permission to get me back "in a heartbeat."  It is full time again, but I NEED those ladies in my life more than needing more time away. You just don't understand what these women mean to me.  We share, we work, we cry, we encourage and grow, we tell stories, and laugh until tears are falling.  Good tears.  So next Friday I will be back "home" again, and I am breathing so much easier and stepping so much lighter! :)


The one hard part, though, is going away from the new place.  I believe that the people we encounter day to day, everywhere, happen for a reason.  I feel like I've known a few of them forever.  They were kind and helpful and caring and made me feel at home.  I will miss them all, because they've all touched me, too.   Even in the short time we worked together.  Each unique and interesting, and I've loved getting to know them all.  I will especially miss one gal... just a blessing to know.  She has a good heart and soul, and I'll miss her smile and glow. :) 

And on that note, I have loved and continue to love, pray for, and remember all of the beautiful people I've had the opportunity to work with in this life.  Each one has lifted my spirits and left me with wonderful memories.  Life is such a gift!

Well, it's already tomorrow but it still feels like today.  I sit jumbled and confused, but deeply listening to the stillness.  And it's peaceful and it's quiet, and I love this time, even more so than the early morning hours of sunrise.  

This is when I feel the comfort of your prayers for us, when I hear God speaking to my heart saying, "Come, child... Rest in My arms.  I have everything under control.  I am with you through all the ups and downs, the laughter and tears, the mountain tops and valleys, and you never need to worry about anything.  I see the Big Picture.  Just trust Me.  I love you so very much.  Now just rest in Me."

And I do.  And when I wake, I am strong to make it through another of these days.  Because on my own, I would be a puddle on the floor.  He keeps me good.

This is our life. :)

Me, at least on the inside for now. :)

So I will end now until we talk again.  I am occasionally on FB, more often on Messenger and Instagram when I do go online.  It sucks my time away and I don't want to waste it.  I will probably be updating my own blog a little more often since I won't be here.

I just want you all to know that we love you and we appreciate you so much.  We covet your prayers and kind words, your offers of all things good and well.  Your prayers surround us and keep us both strong.  Remember to love, and to forgive seventy-times-seven.  So important.  And smile at everyone... listen to their stories, help as much as you can.  Pay the good forward.  Be a blessing everywhere  --  like you've been to us.

My eyes are telling me it's time for rest.  It's just after 3am as I finish this, and I have church in the morning.  I love the worship & music, the sermons, the people... most of all, God's presence.

I bid you blessed days and hearts of cheer, great memories and long hugs.  

I have to go now.  There are some arms waiting to hold me, and strengthen me for tomorrow.

His.

In Love and in Peace,


Cheri ♥



*Some photos are ours... some free art online.  Enjoy them all. :)